TBDWG December 3, 2018 - Written Public Comment
All Tick-Borne Disease Working Group (TBDWG) meetings dedicate time for public comment. The TBDWG invited written public comment on issues related to the Working Group's charge. Written comments are submitted via email to the TBDWG mailbox. Below are the written comments submitted by individuals for the December 2018 meeting.
Anonymous Commenter 1
Welcome to “Mothers against Tick Bites.” Help share the word to other mothers.
The recent August Conference on Lyme Disease and Ticks, held at the Westchester County Center NY, had few answers that would be actionable now. After 20 years of study, the scientific community still cannot determine whether the tick infects the small animals, or the small animals infect the ticks. They will spend many millions perpetuating their study until they find the answer.
As I ponder the real question, I can only come back to the conclusion that came to me, being on the ground with clients, with real kids. The conference simply told me that the scientist are picking topics out of the vast pool of ideas, without the guidance of policy makers who have not given enough time to think about the problem.
For your imagining until we can find a better set of conspirators, let’s leave it as a shared mutual benefit between politicians, building developers in the suburbs, real estate lobbies that market homes in tick endemic areas, ambulance chasing lawyers and the confused medical community, that benefits from office visits, lab testing, and chronic care schedules.
The problem is exposure to humans, by means of active questing infected ticks.
The real soldiers in this battle must be the mothers of the affected children. Any adult, who is not aware of Lyme disease and the risks for catching it, has been kept in the dark, due to lack of information. Ask anyone you know, and you will get different answers on the subject. The general public lacks adequate education about ticks, disease, and the real danger of exposure to tick bites. Education about prevention of tick bites can reduce the 350,000 cases in the US of tick related diseases.
Programs for education of mothers of young children, and their care takers, need consistent educational opportunities, to make them aware of the continuous and changing risks of tick exposure, in the endemic geographic locations that they frequent. This includes homes, schools, ball fields, parks, bicycle routes, play areas, lakes, camp sites, hiking trails, and all other locations children will be at high risk for tick bites.
One efficient method is to post signs at the entry to these locations, with web site addresses on those signs for further local information. Currently one broad stroke education program is available at www.dontgetticked.com. Economical publicity about tick risk, prevention, and control, can be made available and mandatory, for folks visiting, Doctors, real estate offices, village halls, Veterinarians, athletic activities, Little League, Football, Soccer, Scout meetings without great cost.
Publications can post public service messages in Newspapers, Medical magazines in the doctor’s office, Penny Saver magazines, Area publications, church bulletins, senior centers, pesticide dealers, RV dealers, camp grounds brochures, travel brochures, Real Estate brochures, Super Markets, Libraries, Bus Stations and Bus Stop advertising, Railroad Station advertising, Schools, Golf Clubs, Hospital waiting rooms, Home services magazines, Hair dressers and Nail salons, health and exercise outlets, sports stores, Local TV and radio stations. Organizations can be supplied Bumper Stickers, and buttons for distribution to their members and events attendees. Political campaigns can be incorporate tick education in their publications. A Cd available on Netflix, and U-Tube can be developed.
These announcements can be repeated on the basis of general surveys of the general knowledge of the public in endemic areas. We do this kind of publicity for drug abuse, HIV prone areas, mosquito control, flu vaccine, texting and drinking while driving. When one looks at the numbers of victims of Lyme disease, over 350,000 nationwide, the numbers are comparable, and clearly indicative of the need for broad based preventive education. The emphasis has to add the assistance of the existing epidemiologist support from the Health Department. They can chase down venereal disease. Why not use these skills to locate and publicize Lyme disease prevention. The answer is budget. Do the numbers allow reapportioning of budget according to the severity of the problem?
To further the education program, local presentations about the need for preventive work, and the actual preventive training and information can be made available with the help of the Master Gardner Program, and the Integrated Pest Management staff at the Cornell Cooperative Extension. Cornell can organize and development of home use pesticide testing, and recommendations. They already do it for farmers as a land grant College.
Active Mothers can receive the training needed for the presentations, and be recruited to get the word out. After all many mothers are teachers or nurses by profession. The training would be minimal about the message to be delivered. Prepared presentations can be available at a central web site for download from the Center for Disease Control site, Regional coordinators and coaches can be made available through the Cooperative Extension Service. Continual local health data can be made available from local Health Department sites. These are existing funded resources with all the necessary knowledge based resources to put this program together.
Funding can be made available to tick prevention activity through simple dedicated appropriations. Citizens have to present five minute testimony to local Legislative and Education Boards with handouts to educate government of citizen concern. The need is for Policy makers to make the proper decisions to direct existing resources toward the priority of prevention of tick bites in the first place.
Done with strong policy decisions by local, and central government, and the call to actions by the Mothers in the world, the growth of Lyme disease and many other diseases caused by the communication of disease through tick bites can be reduced. Education is the answer to this problem down to every child, through the information in the hands of the children’s care givers.
Self-help is a proven resource. Look at the success with alcoholism, drug abuse, weight loss, mental health, bullying, STD, child development groups. The only requirement is the will to action.
The epidemic of Lyme disease is such a call to action. Every Mother must become expert at three areas:
- Geographic Area analysis for their family.
- Background in the life cycle of the ticks and their behavior, what to look for.
Daily inspection and bathing for children after being outside.
Education of children, to report tick encounters, and how to avoid high risk areas, during their daily routine.
Personal and area protection. Repellent application, tucking in of trousers to socks, wearing of long pants, and spraying with repellents on clothing below the knees.
Proper tick removal, storage, and expanded tick testing facilities for parents.
Tick kits with small bottles with alcohol to store removed ticks. 10X power magnifying glass,
Full length mirrors in bathrooms for self-examination, and large hand mirror for self-inspection.
Safe insecticidal soaps for ticks on humans, not just dogs.
What to do at the doctor’s office.
Timing and proper use of pesticides. Home owners can treat their own properties with proven safe non-toxic products at low cost.
Symptoms to be aware of, when living in endemic areas. Not all cases are detected, cured with first recognizing the danger. Many go undetected and develop more serious disease as time goes by. Some folks cannot take all medications. Some medications can cause allergic reactions. Recognition of these complications is important to recognize and report to health care providers.
Rewards programs for education volunteers, who show good works and leadership will make news for publication and motivation for all mothers to get involved. Broad publication on water conservation, solid waste recycling, Voting, Health emergency, weather emergency are essential tools for getting folks to take action. The epidemic numbers of Lyme disease and the resulting expense and disruption of families warrant a proportional publication of the need to become fully educated at the family level. The financial and productivity loss savings potential is huge. This program can reduce tick cases by one third or more in a relatively short time frame.
Political Caution must be thrown to the wind to get the job done. The major reason for lack of effort is the financial interests of the Real Estate Industry, and the fear of doctors that unsuccessful treatment will damage their careers. When you bought your house did anyone mention the tick risk in your area? When you sold your last house, did you mention the tick risk to the new prospects visiting the property? New buyers need to know this part of the story. Engineering reports should mention tick risk factors. These reports have to mention termites, water, asbestos, and septic risks. Tick risk factors should be mentioned as well. Licensed Real Estate Brokers should be required to supply the latest “tick risk report“ to all prospects. This information needs to be available as much as child predator information. Ticks are child predators. Mothers and children need to know how to prevent tick bites that may be infectious.
Doctors need to become more active in the warning to patients about their risks, and the risks where they live. A simple handout for new patients can be distributed in the waiting room, about their residence location and local website information. Often Doctors Offices have TV advertising for medicines and disease. There needs to be more on ticks and their bite, and how to avoid diseases transmitted by these bites.
Local Village and town TV educational channels can have repeat information series instead of the striped color screens we see most of the time. Cable Channels can have schedules that include local education group meetings on TV for those who cannot attend. TV Bulletin Boards can add Tick meeting schedules and Health alerts during tick season to their local calendar of announcements, along with the scheduled knitting activities. Libraries can have programs for children and adults.
Board of education meetings can include policy statement of financial support to tick education in the community and the child education Health education program. Schools can post information and programs, similar to STD, and shooter self defense programs.
Church groups can invite Lyme disease educators to make presentations for the parishioners.
Scouts can earn Merit Badges for Health including Lyme disease prevention and action to be taken.
The emphasis has to be moved beyond the entomology of ticks, to the epidemiology of Lyme disease prevention and education of the general public. This disease has a growing population and location of infected tick vectors. With the warming of the region new ticks with new life cycles and mobility are becoming added risk. Though small now, there are new risks of new diseases becoming available with more dangerous risks. The public information process has to be proportional to this growing epidemic.
Anonymous Commenter 2
I’m 11 years old, and I have Alpha Gal Syndrome. I never would have guessed that I had AGS, I was really surprised when my test was positive. I learned about AGS about 5 years ago because a friend of mine has it. Then about 6 months ago I found out my dad has AGS. Mom and Dad decided that everyone needed testing because we had all been bitten by so many ticks and there were different symptoms from everyone. They couldn’t see us all at the Dr. together so my brother and older sister went to the Dr. one day and me and my other brother went the next day, then a couple days later we had our testing done. We found out that I had it first because the Dr. left a message on our answering machine saying that I had it. So my dad dropped by the Dr. and picked up all our lab results and we learned by the results that my brother had it too, the Dr. had told my mom and dad that his test was negative because he didn’t know how to read the lab results. A few weeks later, my mom and little sister went and got tested and we found out my mom has it too, which we suspected because she had been having symptoms too.
AGAS has been hard for me because when I go to the store and want to buy a snack to eat I have to have mom check it to see if it’s safe for me, but she doesn’t always know. Usually it either takes a long time to figure it out or I just have to find another snack because we can’t figure it out. Eating out is frustrating because I never know what I can get. And I’m getting sick of eating chicken all the time.
I have a cat named Stormy that I’ve had for 2 years now, I rescued her from the shelter and I just adore her. Stormy has been my project cat for 4H for the past 2 years and she and I even won honorable mention at the Ohio State Fair this year. I had planned on her living with me for our whole lives but because of this allergy I don’t know if I’ll always be able to keep her. I still plan to but I always worry that I won’t be able to.
It’s not the actual allergy that bothers me but it’s being afraid of what could happen. My dad had an anaphylactic attack earlier this year and he couldn’t breathe, the thought of that happening to me is very scary.
If I could ask you to do something to help make things easier for me, I would like labels to say mammal or something simple like that so that I could tell for myself if something was safe for me or not. I’d also like for the Drs. to learn about AGAS more so that they can figure out how to help me and my family and friends not have it anymore.
Anonymous Commenter 3
I am 10 years old and I live in Ohio. I found out last month that I have Alpha-Gal Allergy Syndrome. Alpha Gal stinks because I can’t have a lot of my favorite foods like cheeseburgers, steaks, pork chops, and sausage. I live on a farm where we used to raise a lot of our food (all those favorites I just mentioned) but we’ve now sold most of our cows, we stopped raising hogs, we’re rehoming most of our rabbits, and we aren’t getting sheep and goats like we had planned for our farm. We (my siblings and I) have a lot of pets like a dog, cats, a guinea pig, and a ferret and we Hope we will be able to keep them. I’m afraid that because of Alpha Gal I’ll have to give away my pets too. My mom says we’ll do whatever is best for us but we’ll try as hard as we can to keep them.
My Doctor doesn’t seem to understand much about Alpha Gal, he even told my mom and dad that I could still eat meat even though it made me sick, but mom and dad knew that I shouldn’t. I wish all doctors had to learn about alpha gal syndrome. My biggest fear right now, is the thought of having to use the epi pen. I know in my mind that I might HAVE to use it one day but that is a very scary thought! I don’t want to ever have to stick a needle in my leg!
I get upset sometimes when I try to find something to eat, I always have to have my mom check every label because they are hard to read and I can’t tell which foods have mammal products in them. I know I shouldn’t eat mammal ingredients but I can’t tell what has mammal in it from the labels. My mom carries a bunch of papers with her that has lists of ingredients that are made of mammal but there are so many different names of ingredients that I can’t remember them all. And even with the list my mom often has to call the company to find out if the products are safe for me or not. I used to be able to just run into the store and grab a snack when I wanted to but now I can’t. My mom has to go with me to check ingredients and it takes forever! And even when I’m with my grandma she has to call my mom to check ingredients because she can’t figure out what’s ok or not either. I wish the labels were easier to read.
I know that they say this syndrome is rare but that doesn’t make sense to me because in my family, I have Alpha Gal Syndrome and so does one of my sisters, my mom and my dad. AND my friend has had alpha gal for 5 years now. Also, my mom has several friends who have Alpha Gal Syndrome too and we don’t even live in an area where anyone has ever heard of AGS (especially the Doctors).
On our farm, my favorite place to play was in a pine grove in one of our pastures. It was the best place to play because it has lots of trees and a little creek through the middle were we would spend hours lots of time, building blinds and playing around the creek. We got a zip line for Christmas last year and my parent’s set it up in the pines for us. It was so much fun! But right after my dad was diagnosed with AG we had to tend to a steer in that same pasture and my mom got bit by 3 ticks there, so they wouldn’t let us play there anymore. If me or my sister get bit by another tick we could have more reactions or if my other siblings get bit again they could get AGS so my mom and dad won’t let us play there much, now we have to wait until winter to play in the pines. We had plans to build some tree houses there but now that we can only play there in the winter, I don’t think it’ll be as fun. My siblings and I also used to hike all over our property, we knew all the trails but now everything has to wait until the winter when the ticks aren’t out.
Sometimes, I get mad that I have Alpha Gal, but since I found out that I have AG I don’t eat or use mammal products and I’ve been feeling much better. I haven’t thrown up once since we changed my diet and I’ve only had a couple of headaches so I am happy about that.
Anonymous Commenter 4
I’m a 48 year old husband and father of five. I hope you read on.
I’ve been diagnosed with Alpha Gal Syndrome (AGS). Worse, my wife, one of my daughters, and one of my sons have also been diagnosed with this condition. This means that I have acquired an allergy to mammal products. I ask for your attention in this matter. Please.
I don’t know how long I’ve had this condition. Nobody does. Likely for years. Symptoms became very apparent over a year ago and escalated until my diagnosis in June 2018. My family physician failed to diagnose this condition despite many visits and diagnostic procedures of various sorts. In fact, he determined that my symptoms were all merely psychological, not physiological. I was diagnosed (finally!) only after twice experiencing anaphylaxis and an immunologist had the wherewithal to check for AGS. The diagnoses of my wife and kids soon followed.
I was amazed that my family physician was not aware of the term Alpha Gal, mistaking it for STARI. However, I have been amazed to observe that virtually every physician I have encountered since my diagnosis has been unaware of the condition that has befallen my family. This is DANGEROUS. For example, the anesthesiologist administering my upper GI had no idea that the medicines he normally used may have given me a lethal reaction.
Labeling to address this condition is deplorable. Mammal products are not necessarily highlighted on existing food labels.
Awareness is deplorable. Most doctors haven’t even heard of this disease. The CDC doesn’t list it.
I am a risk analyst in my professional life. Now my wife and I find ourselves balancing our family exposure to mammal allergens.
Anonymous Commenter 5
I am a wife, mother of 5, and homeschool teacher. In August of 2016, we moved to a 62 acre cattle farm in Southern Ohio. It had been our dream for years to raise our family on a farm. We believed it would help our children learn skills and responsibility that would be hard to learn elsewhere. We wanted to instill a strong work ethic in them and to provide the nature focused environment that our chosen educational philosophy required. We also wanted to grow our own foods so that our children would have the healthiest foods available to them. We jumped right into the farm life, it was exactly as we had hoped it would be! Our kids hiked our land nearly every day, they spent hours outdoors completing their nature study assignments, playing in our grove of pine trees, and building blinds to camouflage themselves from the wildlife they liked to observe.
We raised the cattle that we bought with our farm and all of our cows calved without issue which was a blessing to witness. Our kids joined 4H and we added market hogs to our farm. Once the new house was to be completed on our farm, we had visions of adding goats and sheep also. The farm was to be our means of extra income when my husband retires in a few years. But in 2017 everything changed.
During the summer of 2017, my husband started having strange symptoms, his digestive tract seemed to slow so much that he had trouble eating, he had severe swelling in his abdominal cavity and we discovered a huge “mass/lump” just under his breastbone. He had scheduled an appointment with his PCP but before time for the appointment we had our county fair where our kids were showing their market hogs. After only 3 days of being in the hog barn my husband was feeling very unusual; he couldn’t eat anything and the swelling was getting worse, we ended up going to the ER. They ran tests and said there was swelling in his colon, and they couldn’t rule out a malignancy. The mass, they said, was a hernia and we should follow up with a GI specialist to have a colonoscopy to figure out what the colon issues were. We did follow up, and our PCP discovered that my husband had 2 hernias but the “mass/lump” was actually diastasis Recti (torn muscles) from the swelling he was having. He was scheduled for an endoscopy/colonoscopy a few weeks later but by this time he couldn’t eat much (mostly liquids) and he was losing about a pound a day. When he had the endoscopy/colonoscopy ran, his body had had a little time to heal (from not eating) and everything looked good, the swelling in the colon was all gone and they couldn’t find anything physically wrong so he was diagnosed as having functional dyspepsia.
We actually realized during the fall while he was going back and forth on the liquid diet, that if he avoided beef he seemed to be able to digest his food easier. When he ate beef it just seemed to lay on his stomach and made him ache for days. Over the winter he was doing well and we thought it was finally handled, but then in February he started having issues swallowing. It became so severe that he ended up going on a liquid/soft food diet again (and losing about a pound a day again). When he returned to his PCP, he was told that it wasn’t possible for him to be having swallowing issues (his endoscopy in September was clear) and it was all in his head. The PCP scheduled a test for swallowing but he told us that it was specifically to convince my husband that he was fine and it was all in his head. Being on a liquid/soft food diet again helped him to heal and he started feeling better within a few weeks. By this time he had lost about 50# overall and we still didn’t know what was really going on. But we did know that we did not have the support or concern of our physician.
Then on Memorial Day 2018, my husband was brush hogging some of our land. I was in the kitchen making lunch when our oldest daughter came running in screaming that daddy couldn’t breathe. I ran out to find him gasping for air. We didn’t know what was going on but he had had a similar episode a few weeks before (not nearly as severe) so I suspected it would pass eventually like the previous one had. We got him in the house, wiped him with some cool rags and sat him in front of the AC in case he was over heated. It seemed like a very long time but it was probably only a few minutes until he began to be able to get some air. As he was sitting there cooling off, I noticed a tick on his leg and pulled it off. That spurred us to check him for other ticks. Upon inspection I found 2 other ticks on him, all 3 lone star ticks (these ticks did not cause his AGAS but likely caused his attack that day). After reflection of this episode, because it was obstructing his breathing like it was, we started to suspect that maybe this was an anaphylactic attack and we decided to call an allergist to make an appointment.
The next morning my husband called an allergist and when he described what had happened, they had him come in that day. They ran a full panel of allergy tests and luckily this allergist had actually heard of Alpha Gal Syndrome so he also ordered an AG panel as well. We got a call the next week with the positive AG results and my husband was told not to eat red meat. I immediately contacted my friend because her son has AGAS and because of their experiences over the years, I knew that most Drs. were not familiar with it. She connected me with some online support groups and I’m so glad she did, because without them, we wouldn’t have known to be careful about mammal ingredients in other things like medications and personal products as we had only been told to avoid red meat.
My husband texted his PCP to alert him that this allergist would be sending some test results over to him and that my husband had been diagnosed with Alpha Gal Syndrome. The PCP’s response was that it sounded like my husband had STARI and if we had any questions about it we could make an appointment to discuss it with him. I have no idea where “STARI” came from, we specifically said Alpha Gal Syndrome but apparently even with the name the Dr. couldn’t find information on it. So knowing that our PCP knew nothing about AGAS and didn’t seem to care to learn anything, and that our local allergist also was extremely limited in knowledge on the subject we made an appointment with a specialist on AGAS. We were lucky that he had just had a cancellation when we called and we only had to wait 6 weeks for the appointment instead of the normal 3+months. So 6 weeks later we drove 6 hours to see this specialist. It was so nice to talk with someone who didn’t act like we were crazy!
We had noticed that since June, when my husband was diagnosed and we changed our whole family’s diet, several other members of our family had had some changes in their health too. For myself, I stopped waking up in the middle of the night with my heart racing and chest tightness (which my PCP had diagnosed as anxiety) and my stomach issues practically went away. My 10 year old son stopped waking up vomiting through the night. When I mentioned these things to the specialist he agreed that we should be tested for AGAS as well. It took several months to get appointments for us all to be tested but upon completion of those tests, out of our family of 7, 4 of us are positive for Alpha Gal Syndrome, my husband, myself, one of our daughters (11) and one of our sons (10). It’s one thing for me and my husband to have this but it is really heartbreaking to see your kids have to deal with these kinds of things. I really hate it for them.
There are so many ways that this allergy impacts our lives, areas I just don’t think people understand unless they live with it themselves. I mentioned our beloved farm earlier, AG impacts our farm because 4 of us are now allergic to the very animals we raise. One of the reasons we moved here was to be able to raise healthy food for ourselves and now we can’t eat the meat we raise. We sold all of our hogs last fall and will probably not ever have them again. We downsized our cattle because having them is risky for us. When they calve, there’s a risk of us handling the calves, the birth fluid makes it more risky and frequently we have to retrieve a newborn calf from under a fence (they seem to always want to go where they shouldn’t). And there’s always the threat of going into the pasture and being bitten by a tick. We had planned to raise goats and sheep as well, but not now. We may decide to increase our poultry operation but our farm was designed for cattle and it’s not set up for much poultry. To expand in this area would be an expense that we hadn’t intended and quite a bit of time to get it completed.
AG also impacts my children’s education. We are a homeschool family who uses the Charlotte Mason method of education. Up until this summer, when my husband was first diagnosed, we used a curriculum that had a specific focus on nature and observation, as per the CM philosophy of education. For this school year, we’ve had to adjust the nature study portions, which impacts our science study and although we’re making due, it’s not nearly as enjoyable. It is also much more time consuming on my part because of the adjustments that need to be made just to make the study possible. My children used to thrive spending time in nature, but now the threat of being bitten by a tick has to be the priority. It is what it is, and we can’t change it right now, but it’s a shame that my children have to settle for less than the full experience of this amazing educational method that they are accustomed too, all because of ticks.
As the preparer of meals for my family, AG is a nightmare. Trying to figure out what is actually safe to eat is so frustrating! It takes me hours at the store reading labels, comparing ingredients to the 17 page list of ingredients I carry with me, and still having to call the companies because they don’t list if the ingredients are either plant or mammal derived. Then there’s the issue of mammal products being used in the processing of the foods and not in the final ingredients so they don’t even have to list it on the label but my family may still react to it, which is scary! My kids are young and there’s no way they can figure out what is safe or not because there are so many different ingredients that are mammal derived, even my mother has issues figuring out the labels. So I have to check every label of every item that they consume. If they’re not with me, they have to call me to verify safety. And if I slip up and make a mistake, it’s possible it could cost someone I love their life, which is a constant concern. It’s frustrating that in this day and age, food labeling is no better than it is.
As a mother of children with AGAS, I have 2 major concerns that weigh on my mind constantly:
- What would happen if my children would need medical treatment at a time I wouldn’t be there to advocate for them? Since AGAS is so unknown in the medical field (at least in our area), it’s likely that my children could be injected with something that is mammal derived which could possibly kill them.
- What does a future with AGAS look like for my children? There’s already been a study that indicates AGAS patients may have a 30% increase in plaque buildup in the heart. We know that this study is inconclusive and much more research needs to be done but it does shed light on the uncertainty of this condition. And it keeps this mom awake at night worried for the future health of her children.
These are just a few ways, off the top of my head, that Alpha Gal Syndrome has affected our lives. In the end, we are very relieved to have some answers to our health issues. I don’t want to minimize that fact, it is a blessing to have answers and to see our health improving, but we have many more questions; questions that will never be answered without the funding provided for research. Our children deserve these answers so they can make wise choices about their futures and feel safe about the decisions we are making for them today. I truly appreciate that you have given me an opportunity to share about the impact of AG in my own family and I ask that you do all you can to help us learn and understand AGAS so that we can look forward to having a healthy future.
Anonymous Commenter 6
I recently found out I have alpha-gal allergy. My alpha-gal IGE was 100 in October. (A negative result is 0.35 or less). I lived with random allergic reaction for 8 years before I found out what caused them and was diagnosed.
I cannot go food shopping without spending hours in the grocery store. Food labels often have ambiguous terms like "natural flavors." That could be any number of things, so I have to avoid it because it may mean beef broth. Chicken that is injected with flavorings is not safe for me. Mammal meat/byproducts do not have to be labeled in food and because of this I spend a long time trying to figure out if I can eat something. Often, I end up having an allergic reaction once I try a new food because labeling does not clearly show whether mammal meat or byproducts are in my food. This should be addressed for the safety of consumers like me. Usually, I have no idea which product closed my throat, I just know it had mammal ingredients.
There is no list of mammal ingredients in medicines that pharmacists can refer to. So, I live in fear of anaphylaxis when taking a new medicine. It's just a try it and hope I don't die process, sadly.
It costs twice as much to feed me as the rest of my household. We are on food stamps because life is hard these days and alpha-gal is super expensive. I don't buy the expensive stuff because I want to. I buy it so I don't die after I have dinner. My food stamps don't come close to covering what I can eat, let alone my family's food. A provision to assist those with a documented severe food allergy should be added to the SNAP program.
In the current state of things, alpha-gal should be considered a debilitating disease, since nothing is labeled clearly and we always run the risk of being in danger. The time it takes to try to avoid most of these things is immense and leaves little time to do other things. Also, instead of just a vegetarian option in institutions (schools, jails, prisons, hospitals, etc.) a mammal free option should be mandated.
Anonymous Commenter 7
I am an 81 year old female previously in good health. We lived in a lovely small town in Arkansas. Our home was about 15 miles from the regional hospital. I was bitten by a lone star tick in late March. Subsequently, I began to feel ill. I developed a severe rash that started on my legs. I had become very itchy and miserable so I went to the clinic and was prescribed Prednisone. The itching continued so I went to my primary physician. He recommended antibiotics and ordered lab tests. I told him about the tick bite so he ordered tick titer. He called and told me my Sed Rate was sky high. Three days later I passed out and was taken to the ER.
The hospital kept me a week. During that time I was undiagnosed and treated for an urinary infection, anorexia, pain and anemia. During my stay I experienced hallucinations. I was told that was because I wasn’t eating. I had no appetite and had been losing weight.
After week I was sent to rehab and a week and a half after the lab test was told I had Alpha gal and Rocky Mountain spotted fever antibodies. No one was aware of any treatment - just was told just not to eat meat. The diet during rehab was awful and my husband and daughter brought me food I could eat. Even speaking to the Dieticians, the facility could not accommodate me. After 2 weeks I was released to go home.
About a week later I was back in the hospital with fever, pain and again undiagnosed infection. I told the staff and Drs. I had Alpha gal but the doctors insisted I be treated for a severe urinary infection. Finally one of the nurse practitioners asked why my stomach was so hard. That is when they discovered a 15 cm mass in my colon.
Now I was scheduled for surgery. Still any precautions regarding Alpha gal were not taken into consideration. I was in surgery 4 hours, and when I began waking up I began to hallucinate. I remember being strapped down as I fought the restraints. I know I struck someone who hit back. I spent about three days in ICU before being placed in a room. I discovered that the surgeons gave me an ileostomy. By this time my husband and daughter were so upset with the treatment and lack of knowledge regarding diet and care that they decided that they would move me to be near my daughter 300 miles away.
The hospital gave us no instructions or supplies to care for the ileostomy so my daughter made arrangements at a rehab center close to Kansas City. We drove 6 hours to get appropriate care. The rehab was not knowledgeable regarding Alpha gal but were willing to learn. I spent a month in rehab learning how to care for both diet and surgery. In September my surgeon scheduled me for reversal surgery. This time a new surgeon took care to research Alpha gal and avoid any side effects so surgery went well. Now two months after the reversal I am doing well and just learning to deal with my diet and occasional flare ups.
Anonymous Commenter 8
I am a 39 year old female who has been diagnosed with Rocky Mountain Spotted Fever and Lyme disease, which I acquired between Winslow, AR and West Fork, AR last summer of 2017 while living out in the country. After close to a year I found a doctor willing to treat me with two different antibiotics for a longer amount of time. I have since been able to overcome the Rocky Mountain Spotted Fever, but unfortunately not Lyme Disease.
I had developed some allergies/intolerances to many foods already as a result of these infections, which I still battle in part. Now I have found recently that I have developed an allergy I was recently tested for called Alpha Gal. Often acquired by a tick bite from the Lone Star Tick, Alpha Gal is an allergy to all mammalian meat and its byproducts, such as gelatin, glycerin, dairy, etc. Apparently all of these products are in most everything that is processed, included in “natural flavors” on the ingredients listed, etc., and it is very hard to find things I can eat or something I will not have a life-threatening allergic reaction to including trouble breathing, chest and back pain, extreme fatigue, high blood pressure, etc. It’s also difficult because the reactions can often happen hours later, so I was having all these symptoms for months while doctors were clueless as to what was going on, and I was, meanwhile, bedridden, unable to work, and felt I was going to die.
I would not have been sick for so long (over a year) if doctors would have tested me earlier when I requested it after being bitten and having flu-like symptoms that didn’t go away. I have been unable to work and been a burden on my family because of these illnesses which most doctors seem to not understand or want to treat. In fact, I was CDC positive for Lyme disease, and yet I was denied an appointment by an infectious disease doctor my doctor referred me to. Also, the Department of Health called me in regards to my test results and also told me there was no way I had Lyme disease. However, it was 100% CDC positive, as also confirmed by another doctor much later. This delayed my treatment and caused my conditions to worsen. (If you need evidence of this test result, please contact me.)
I finally found a doctor almost a year later who would treat me with antibiotics, diet changes, and suggestions for natural remedies, as well, but this doctor was very hard to find, and takes me hours of driving to get to. I also have to find someone to drive me, because I can’t drive myself, or even see to drive at night anymore due to the effects of these illnesses. If I can’t find someone to drive me to the doctor, I can’t get to a doctor who can continue to treat me or find more answers to help me.
I would like to ask for pressure to be put on insurance companies to include payment of treatment for Lyme Disease as the physician sees fit. And for support in the medical community of further research and commitment to finding answers.
Now that I know I’m positive for Alpha Gal and have Lyme Disease, I have a chance to do something about it if enough awareness and help is available. I would like to ask for more awareness to be brought forth for all three of these health conditions (Rocky Mountain Spotted Fever, Lyme Disease and Alpha Gal).
Thank you for your help and consideration.
West Fork, AR
Anonymous Commenter 9
The report is tepid.
Borreliosis is not.
The failure to acknowledge persistent borreliosis infection as a known cause of symptoms after "treatment", (culture proven by CDC and NIH in spinal fluid and heart tissue) is a serious ethical flaw.
"persistent symptoms after treatment of Lyme disease can be severe, yet the cause(s) remain unknown..."
Anonymous Commenter 10
I am a sufferer of Alpha-Gal Syndrome. I recently went in for my recommended (but dreaded) colonoscopy.
I was honestly not sure I was going to survive the hospital visit due to the complete lack of knowledge about Alpha-Gal by 100% of the medical staff I encountered.
I had to explain everything to the surgeon at the pre-op visit. This included things such as questioning the lube that would be used AFTER the doctor had assured me she had thoroughly investigated everything and there were no issues. (she then proceeded to check out the lube).
I had to explain to the pre-op nurse, who had to go to her supervisor to (supposedly) figure out what I was talking about and document it. As it turns out, the allergy was incorrectly documented.
The first thing I was presented when I walked in was a release for anesthesia. I would not sign this before speaking to the anesthesiologist. The anesthesiologist would not really listen to me or read the information I tried to provide. He just wanted to ask his questions, and informed me that he was ‘99% certain nothing he used’ was sourced from mammals. Sadly, as a lay person I was 99% certain he was 100% wrong about this, most likely never having faced this situation before.
I learned that my chart ‘showed no allergies’ which I have come to believe must have really meant ‘no drug allergies’ or any other allergies that they thought were of any concern to the hospital as the nurse HAD documented something, but done it incorrectly. They finally picked up on the incorrect allergy and gave me an arm band saying that. When I noticed, I had to wonder if an incorrect label was worse than none at all? I got one nurse to listen to me enough that she said she would research it, and AFTER the procedure told me I was right.
The whole thing was terrifying, I honestly wondered if I was actually going to wake up from the procedure. Not only did the staff not know about Alpha-Gal, they were not willing to listen to me about it. I honestly think they just thought I was just a trouble patient. Sadly, they were more concerned about their schedule than what I think they thought was a fictitious disorder.
As terrifying as this was, at least it was planned: I had the opportunity to attempt to provide information in advance and I was cognizant and could communicate coherently. What if I was in an automobile accident and went to the ER, unplanned and was unconscious and unable to communicate?
Education is desperately needed for ALL medical care givers, from first responders, to nurses, to surgeons.
In order for that education to actually do any good complete and easily accessible information must be made available about ALL products. This includes medication, products (for example band aids and their adhesives), as well as things such as food and cleaning supplies. In other words we need 100% transparency throughout the entire supply chain in the US. Human health takes priority over any perceived privileged ‘proprietary information’ (i.e., ‘natural flavors’ can kill).
King George, Virginia
Anonymous Commenter 11
It’s very important to me that the public is aware of the severity of this allergy and how it changes the lives of those affected.
I will tell you my story, but let me get to the main points first. Those of us with the Alpha Gal Syndrome (IgE antibody response to a mammalian oligosaccharide epitope, galactose-alpha-1,3-galactose) spend a lot of our time in a state of fear and confusion. This condition is relatively new, so most people don’t know that what we are experiencing is an allergic reaction, and by most people I mean those of us who are allergic, all of the people we are surrounded by and interact with, including friends, family and business associates as well as those businesses that we frequent and even the health professionals that we look to and trust to help us.
So many of us have been misdiagnosed and misunderstood not only by those that we explain our problem to and seek help from, but we even misunderstand ourselves. Since the reactions are most often delayed by several hours after ingestion, it is difficult to figure out why we have these attacks. Sometimes it takes years of frustration, discomfort and mysterious scary experiences before we are aware of what the culprit is and how we need to handle our condition. Even after being diagnosed, this syndrome can change and many of us discover over time that we have become more sensitive and also to more triggers that didn’t affect us before.
Once we are diagnosed by results from a blood test or other method, we are usually just told to avoid mammal meat. We have learned that it goes well beyond that. Many of us have reactions, some severe, to anything from mammal no matter how small of an amount. We are affected by more than ingestion, but also topical and possibly any kind of contact including breathing in fumes. This is a huge amount of items that we ingest, use and come in contact with every day, never being aware of the potential danger. It goes way beyond the obvious, such as dairy products that we learn to avoid. As we start to read and research all of the ingredients in everything we use, we find mammal everywhere and in everything, cleaning supplies, personal care products, vitamins, medicines, even food items that we would expect to be vegetarian and items that contain Carrageenan, defined as linear sulfated polysaccharides that are extracted from red seaweeds, widely used in food and other products for their gelling, thickening, and stabilizing properties (which is in so many products including vegan substitutes) as it breaks down basically to galactose-alpha-1,3-galactose.
In order to avoid having reactions, we end up spending hours researching ingredients on items that we never would have thought we needed to before. What was once a quick twenty minute grocery trip turns into two hours of picking up items and reading every single ingredient, scanning them with vegan apps on our phones that look for animal ingredients and look up unknown ingredients or contact manufacturers to determine if they are safe or mammal based. It does get easier after some time of learning about ingredients and what products are safe, but there still is an awful lot of time spent picking up items and putting them back because of ingredients that might affect us.
It also becomes very difficult to eat anything other than home cooked meals. No matter how clearly we try to explain our needs to others that prepare our food, there are often mistakes, misunderstandings and cross contamination that can lead to severe reactions.
Because of the usual delayed reaction, we also spend a lot of time watching the clock, constantly nervous until we think we have reached that time so many hours later that we are safe to believe we will not have an attack.
To those with this condition, Alpha Gal is the cause of so many negative physical reactions and feelings. Once we are affected, we are often paranoid and scared to the point of feeling lost and overwhelmed about everything we eat and use, to the point that our diets become a very few specific things that don’t make us sick, so far. We are often angry and frustrated once we discover just how many things we need to avoid if we want to feel better and even just normal. Sometimes, we avoid eating with other people, not just for our safety, but so we don’t have to explain our situation and convince them that it’s real, not just in our heads, we are not hypochondriacs and that it is severe, possibly life threatening.
We are even afraid of going to the doctor, the dentist or even to the hospital out of fear that they don’t understand or sometimes don’t even care or believe our condition and what can be a potential harm if they use certain products to try to treat us. We become mostly self taught about this disease and learn not to trust others that think they are helping us.
Personally, I have been living with Alpha Gal for about five years and I have experienced changes and heightened sensitivities. I found a tick in the skin of my knee in the summer of 2013. I went to a clinic at the local hospital and they gave me antibiotics just in case. I took all of the antibiotics and didn’t seem to have any reactions otherwise. A few months later, I started to experience weird feelings after eating beef or pork. I went to the doctor and told them I was having unusual gastrointestinal discomfort after eating burgers or bacon. After some discussion, they tested me for H Pilory. The test came back positive and I was put on antibiotics again. I seemed to be ok for a while but I still mostly avoided mammal meat. Every once in a while, I would get the same discomfort and eventually cut out mammal completely. I had heard that some people had become allergic to mammal meat after being bitten by a tick, but I didn’t know what it was called and didn’t do any research. As some people do, I decided to just avoid what was making me sick instead of going to the doctor to find out that it was something terrible, like cancer. I was paranoid in my head most of the time, but I was still alive
In the summer of 2018, I started to have the same scary reactions to dairy. Those I am close to often told me I needed to go to a doctor and get tested. When all of the sudden, the tiniest amount of dairy caused an attack, I decided it was time to find out if it was Alpha Gal or otherwise. By this time, I had done some research. I knew what it was called and I knew about some of the things that could be causing my problems. I say some because after I tested as very highly positive, I really dug into reading everything I could find in reference to Alpha Gal and found out that mammal was all around me in things I would never consider before
At first, it was kind of like mourning. I was terrified and angry. I cried every time I went to the grocery store for the first few weeks. I asked my doctor if I should get an Epi-pen. She said yes and prescribed it immediately. That really scared me. Then, I just went overboard asking others with this allergy questions about everything. Can I have a dog? Can I wear leather or wool? Can I go on a hayride at a cattle farm? Maybe, maybe not. Some people had distinct reactions to those things, others were shocked that there were so many more things they had to consider. Sugar and even some bottled water causes attacks for some because they are refined or treated with mammal bone char. It’s just crazy and seems to be ever encompassing.
It does become easier but I must be ever vigilant and insistent about my needs. This condition is spreading and we need to make others aware that it exists and explain what it means to keep ourselves and others safe. We desperately need regulations put in place to inform us about exactly what we are purchasing to put in and on our bodies to avoid severe and possibly life threatening events. Those in the medical field must be educated as well, in order to be able to help the many other people that will be coming down with this condition soon.
Anonymous Commenter 12
Last week, I went to the chiropractor to have my back adjusted. I ended the appointment being transported via ambulance to the hospital because I’d gone into anaphylaxis. That was definitely not how I planned my day. Allow me to explain.
In the spring of 2015, I was diagnosed with Alpha Gal after having 9 months of fatigue, all over body aches, lethargy and being unable to do my usual exercise activities. It had gotten to the point where I was nearly couch-bound, unable to even walk across a grocery store. I had an allergy test and showed reactive to beef. I figured out on my own that I probably had Alpha Gal. I asked my local allergist to be tested. She said, “You probably don’t have it, but sure, I’ll test you.” The test came back positive. I am particularly allergic to beef and milk. Since being diagnosed with Alpha Gal, I have been diagnosed with Mast Cell Activation Syndrome because of the Alpha Gal. My particular version of Mast Cell Activation Syndrome is that I am very sensitive to mammal-oriented food (especially cooking or newly-cooked pizza and beef,) and apparently….after last week…..airborne construction materials, because there are mammal byproducts in many elements of construction, such as drywall and latex paint. So I cannot go into any pizza establishments (the last one nearly ended in anaphylaxis,) pot lucks, church events and buffets are also out because I cannot control what is being cooked. Thus, I cannot control what I am breathing and I go into anaphylaxis. It starts with dizziness, progresses to a headache, morphs into facial tingling and numbness, and then I lose the ability to make my hands work, my speech (if I have any) is slurred, I cannot process simple thoughts or actions and fainting is a very real possibility if my throat doesn’t close first. From start to finish, I have 20 minutes from exposure to anaphylaxis.
ER doctors in the Springfield, Missouri area are finally hearing about Alpha Gal. But they don’t understand what they need to do. It sounds foreign to them, there is not enough education. Not only do I (or my friend or family or my medical paperwork or medic alert bracelet) have to inform them what I have, we also have to inform them how to treat it. (IV Benadryl, Solumedrol.) There is a definite “deer in the headlights” look that I get when I try to explain airborne issues to them on top of Alpha Gal. And per my renowned Allergist, Dr. Scott Commins with the University of North Carolina Chapel Hill, 40-50% of his Alpha Gal patients have airborne reactions, yet he does not have the funding – we do not have the funding—to create a fume lab. A laboratory to test this. So until then, you will hear of people going into anaphylaxis. You will hear of the increase of visits to Emergency Departments. What you will not hear of is how we are being helped. How the ED doctors know what to do, because in my area, that doesn’t exist. And if it does, it’s because we have to tell them. I have even gone so far as to contact my local ED and offer to come and speak to the doctors. To try to tell them what happens to me, what happens to others, what they may see. They said no, thank you.
Since being diagnosed with Alpha Gal, my immune system has completely revolted. I cannot go out to eat anywhere due to potential cross-contamination. I cannot have any food, personal products (shampoo, makeup, lotion) or laundry detergent with any mammal in it. Mammal is not required to be documented on any of those items by the FDA, so I must call the company on every single thing I eat, drink and wash with. The only safe recourse we have is “vegan” items, and even that isn’t foolproof. I must get essential medications compounded so they do not have mammal or lactose in them (at the cost of about $500 a month, insurance does not pay.) Due to Alpha Gal, I have developed an allergy to blue dye 106 and blue dye 124, which is a dye in nearly all polyester, acrylic and nylon. I had to purchase part of a new wardrobe (mostly cotton) to the cost of $800. I am unable to wear any wool, suede or leather (since they all come from mammals.) I get hives regularly and after an airborne reaction, I get them in my throat and inside my mouth for at least 3-4 days, as well as being utterly wiped out, no energy. I still cannot eat beef or dairy and frankly, I’m dreading the holidays because I don’t know what to eat and I don’t want to be a burden on anyone. I have to wear a medical alert bracelet because I’m desperately afraid someone will find me passed out in my car or on the sidewalk and think that (mistakenly) I’m a drug addict.
My pharmacy (bless them) vets every single thing I take. That involves about 2 extra days before I can take new medications, as they must call the company and make sure the item is clear of any mammal products or byproducts. Another fear I have is if I have to have on-the-spot emergency treatment. Gelatin (from mammal) is in many things, including many shots. I’m afraid of what may happen if someone has to administer non-Epi emergency care. Oh, and while we’re on the topic of Epi…..my airborne reactions are bi-phasic. Which means that even after I use the Epi, I have a continued or secondary anaphylactic reaction. Thankfully, both of those have occurred inside the Emergency Departments.
Thank you for your time and consideration regarding Alpha Gal Syndrome. We need help.
Anonymous Commenter 13
I have two children who were diagnosed with Alpha Gal in January of 2018. My daughter is 11 and my son is 13. This allergy/syndrome has completely altered everything about how we live our life. For starters, there is so little known about the allergy that finding information is a challenge. If it wasn’t for Alpha Gal Support Non-Public Facebook group, I would be completely lost. I cannot say enough wonderful things about the members in that group and the information they provide.
Since my son was 3 years old he has had chronic urticaria and pain in his body. We’ve been through allergy testing before, took meds, but the hives and other symptoms continued. We was diagnosed with hypermobility and later Pain Augmentation Syndrome (this is like fibromyalgia in children). After persistent hives we returned to the allergist who suggested getting him tested again. We discovered we could not take him off his allergy meds long enough to get a prick test done because his histamine levels remained too high, even with prednisone. We tried for a year and a half to get this allergy test and finally settled for a blood test to look at basic allergies. They found he was testing sensitive to beef and pork, so our allergist suggested we get him tested for Alpha Gal. He tested positive at .53. We asked to have my daughter tested after looking at symptoms and she came back positive at .36.
Our allergist initially told us to completely cut all mammal and by-products out of our diet. My husband had two deer hanging in the backyard when the kids were diagnosed. Trying to figure out how to navigate what to eat was an absolute nightmare for several months. We literally were given nothing to go on. We were sent out of the office and told do just avoid mammal meat and byproducts for two years and come back to be retested. We had absolutely no idea where to begin when it came to by-products. We began reading labels that look like a foreign language. They never say “contains mammal” so we began trying to break down what was in everything. Sausage casings are often collagen casings, some are mammal derived, some are not. Call the manufacturer or look it up online. This has been hands down one of the most difficult things to navigate. Most info online tells you that this is a new allergy-that may be classified as a syndrome at this point. Mammal ingredients need to be specifically labeled on ALL products. Not just food.
In January life just changed for our family. To support our kids, we don’t eat mammal either. I want to understand what they are going through and there was a high likelihood that we may have AGS as well. Our grocery bill tripled the first month. It continued to climb until we found ways to avoid eating our normal diet. Grocery shopping took hours to sort through what we could and could not eat. We got to a point where we just ate the same thing over and over because we knew it was safe (usually turkey, chicken or fish). We love to eat emu, which is very close to beef. It is expensive and we only have eaten it for two meals.
We made it through for several months and it felt like we were adjusting. My son is still breaking out in hives, but not nearly as often. He doesn’t have nearly as many headaches or stomach aches. He has multiple health issues, but currently seems fairly balanced right now. We don’t know if the connections to his other health issues could be linked to Alpha Gal. His doctors don’t know either. We have asked and they always come back with, there is no research on any connections between these issues. Yet I hear people complaining of similar issues all the time.
My daughter on the other hand has been sick so many times in the past two months I can’t even count. She wakes up nauseated, dizzy, her face flushes out, and she starts having stomach cramps. She can have diarrhea anywhere from 2-8 times in just a few hours. We have been to a new pediatrician who has heard of Alpha Gal, but is not familiar with it. He ordered labs and stool samples, all of which came back normal. They thought it was a virus for the first 10 days. It happened a few days a week for several weeks. I began to research the food she was eating even deeper to see if I missing something, the vitamins we are giving her, shampoo, conditioner, toothpaste. We began to weed out any possible offenders we could find. She’s been getting multiple canker sores in her mouth. We switched to a natural toothpaste and they went away.
The only reason I knew to even look at toothpaste, shampoo, soaps, etc. are because I can go online and look up symptoms other people have had that appear to be reactions from mammal related products. Our doctor has no idea what to tell us. He is willing to work with our allergist, but it is terrifying to not have a medical professional that truly understands and knows how to help. I contacted our allergist while all of this was going on and she said to wait it out a few more days and if it didn’t stop to cut out dairy. It did let up for about two weeks and again today, the same thing happened as soon as we got to school. I am a teacher and she is at my school. Fortunately I am there and can talk to her teachers to let them know what is going on. If she was not in my building I am not sure what I would do because this happens so often. I have to get substitutes to cover my classes and take her home until it passes. My days are already running low and we aren’t even half way through the year. I am checking into getting a 504 plan in place for her because it has affected her grades and her ability to be in class. It impacts her physically, emotionally and mentally, every single day.
We keep an EpiPen and benadryl on hand at all times. We’ve never had to use the EpiPen fortunately. Although I have recently discovered there are many people who have to use an epi for extreme GI distress and nausea. Our doctors have never even talked to us about that. It’s always been swelling of airways and breathing issues I had originally thought we needed to use it. So, I research further and further trying to understand how to best protect and advocate for my children.
Going out to eat is always a risk for cross contamination. So far, we have done ok. Sometimes the kids both get sick when we leave a restaurant. Some restaurants are great about cleaning grills or cooking the food separate. Others, it’s best to just not even ask. Mostly, we just don’t eat out anymore. Going to someone else’s house and trying to explain Alpha Gal is exhausting, but we do it everywhere we go. If someone is cooking mammal, there is a good chance my daughter will get sick from the fumes.
We live on a farm and use permethrin on our clothes when we go outside, but we are still exposed on a regular basis. We have chickens and are getting guineas to cut down on ticks in our immediate yard. We are also considering spraying the yard this spring and doing a heavy burn on our acreage.
There are many people with incredibly intense reactions that are far worse than what we deal with on a daily basis. The problem I see is the lack of research and information available to medical professionals and the general public. People need to be educated. Doctors need to be educated about this condition. I cannot state enough how terrifying it is to go to the doctor and have them tell you they just don’t know what to tell you, but to let them know if it gets worse. I live in fear of taking my kids to the ER for a reaction because I am scared they may be given medication that has mammal in it. I recently discovered most vaccines contain mammal. I have no idea how I am going to navigate that because my kids react to some things and don’t to others. If there was more research being done, I would be more comfortable making a decision. At this point, we have to avoid vaccines for now because they could potentially cause my children to go into a life threatening episode of anaphylaxis. OR they could just not feel good for a few days and be fine. How do you decide what call to make when your doctors really don’t know what to tell you?
At only 8 months in on this allergy/syndrome I don’t know if this is a two year adventure or a lifelong issue. I don’t know if this is a syndrome that goes into remission or an allergy that may let up. I can tell you that this does not feel like an allergy. It feels like a very serious medical condition with deep confusing roots. I do know that adequate labeling of products that contain mammal or mammal by-products (FOOD, ALL MEDICATION, HOUSEHOLD, CLOTHING, ETC) would help a multitude of people across our country living with this every day. Raising awareness and providing information for our medical community, providing prevention awareness for others so they do not ever have to face this beast alone.
Thanks for taking time to read our story. I would be happy to answer questions or be of any help I can in finding answers for AGS.
Infectious Disease Society of America
Dear Tick-borne Disease Working Group,
The Infectious Diseases Society of America (IDSA) is writing to provide feedback on the Working Group report as well as the processes the Group undertook to produce the report. We wish to highlight significant concerns with the Working Group having a lack of transparency and minimal opportunities for meaningful public input. While we are pleased to support many of the recommendations, we must stress that some key recommendations, if implemented, would cause significant harm to patients and public health. We urge you to ensure that the federal government response to tick-borne diseases is solidly rooted in the best available scientific evidence.
We have a sincere appreciation of both patients and their loved ones who suffer from both short- and long-term effects of Lyme disease or other conditions. Our goal as infectious diseases physicians, public health practitioners, and scientists is for all patients to achieve the best possible outcomes.
IDSA is the largest infectious diseases medical society in the United States, representing more than 11,000 physicians, health care professionals and scientists. Our members care for patients of all ages with serious infections, including tick-borne diseases. IDSA is committed to giving patients the highest quality care for infectious diseases, including Lyme disease. Society members focus on the epidemiology, diagnosis, investigation, prevention, and treatment of infectious diseases in the U.S. and abroad. We would be happy to serve as a resource for any issues surrounding tick-borne diseases.
Working Group Practices and Composition
IDSA comments are based on the draft report released at the July 24, 2018 Working Group meeting. We are deeply troubled that there was no opportunity to submit comments to the Working Group on this draft for consideration before the final iteration. Until the July 24 release of the draft report, the only information made available about the contents were high-level recommendations voted upon by the Working Group. These recommendations constitute a small minority of the actual content of the draft report. Unfortunately, this is consistent with a pattern of behavior by the Working Group to limit public feedback on its work and, particularly, to stifle the voices of physicians who use sound, evidence-based science to direct care for their patients. Previous comment periods have provided only a few days to review and to respond to the Working Group materials.Further, several of the Working Group subcommittees excluded participants whose viewpoints aligned with scientific evidence and the mainstream medical community, despite many qualified volunteers submitting applications. The makeup of the Working Group skewed to individuals with perspectives that do not align with the overwhelming majority of scientific evidence regarding the diagnosis and treatment of Lyme disease. We do not believe that the Working Group composition and practices align with congressional intent and we are extremely concerned that the non-evidenced based approach favored by the Working Group has produced a report containing irresponsible recommendations that run counter to quality scientific and clinical information. If implemented, these would cause significant harm to patients and public health.
Epidemiology and Ecology Chapter
IDSA supports recommendations for enhanced funding to study the ecology and surveillance of ticks, particularly in regions where the burden of disease may be changing or is not well understood. More funding is also necessary to keep pace with the discovery of novel tick-borne pathogens.
We also agree with the Working Group that additional surveillance and epidemiology are required to understand the burden of tick-borne infections, particularly as the endemic area for some disease-bearing tick species is expanding. As clinicians depend on the knowledge of whether tickborne diseases occur in their community, a proper diagnosis will be impaired if they do not have access to accurate information detailing the burden of disease in their communities. We emphasize that any new approaches for expanding surveillance of tick-borne diseases must meet rigorous, evidence-based standards to ensure accuracy.
While IDSA acknowledges that the CDC case definition for Lyme disease is intended for use as an epidemiological tool, it is incorrect to promulgate the notion that the components of the surveillance definition should not be used for clinical diagnosis. To further popularize such a statement, as the draft report seeks to do, would cause unnecessary confusion among clinicians and may lead to higher numbers of inaccurate diagnoses. The clinical diagnosis of Lyme disease rests on the foundations of objective clinical findings and/or laboratory testing. The language used by the Working Group appears to have the intent of inappropriately broadening the definition of Lyme disease to include patients with only fatigue, pain or other subjective conditions. Such a change would likely lead to many more patients receiving misdiagnoses with Lyme disease; being subjected to unnecessary, unhelpful, and potentially harmful antimicrobial treatments; and losing the opportunity for accurate diagnoses and appropriate treatment of their genuine problems.
IDSA greatly appreciates and supports many of the recommendations made in the prevention chapter. A new vaccine that is safe and effective in humans would be an excellent tool for the prevention of Lyme disease. We also appreciate the acknowledgment of the barriers to acceptance of a new Lyme disease vaccine from the public and industry perspectives. IDSA also believes further research into vaccines that target the disease reservoirs and vectors would be highly beneficial to prevention efforts.
We also support the Working Group recommendation to conduct studies of effective interventions for reducing the incidence of tick-borne diseases in humans, including novel approaches to vector control. Vector control for ticks is not nearly as well understood as vector control for mosquitos. Education of at-risk populations is another vital prevention strategy that should be better used in endemic areas.
Causes and Treatment Chapter
IDSA acknowledges that some patients who are successfully treated for Lyme disease continue to suffer from persistent symptoms after treatment. Further research into the mechanism of these symptoms is vital to developing safe and effective treatments for these patients. IDSA supports additional research to discover better indicators of active Lyme disease infection to help clinicians and patients understand microbiological cure. The FDA-approved B. burgdorferi serologic test inherently is unable to distinguish active versus past infections, which is true of many antibody-based tests.
Federal research funding should be geared toward such studies that will genuinely enhance our understanding of Lyme disease. Conversely, there is not a pressing need for additional federally supported research on antibiotic treatment for Lyme disease. There is clear, widely accepted scientific evidence indicating that a 10-28 day course of antibiotics, depending on the stage of Lyme disease, will kill the Lyme disease bacterium in humans in all but the rarest of cases. In the setting of patients who have symptoms persisting beyond six months after initial antibiotic therapy, six prospective, randomized, placebo-controlled studies have failed to document sustained or significant benefit. These studies serve to counter observational studies that are cited by some as a basis for using long-term antibiotics in patients labeled as suffering from Lyme disease. The scientific method based on prospective study indeed informs clinicians with the highest-quality evidence. Therefore it is easy to state that there is no robust scientific evidence supporting the use of long-term antibiotic therapy in patients with Lyme disease as an approach to help with chronic symptoms such as pain, fatigue, sleep difficulties or subjective neurocognitive complaints.
IDSA agrees with the Working Group that effective therapeutics for symptoms that persist after Lyme disease treatment would be beneficial. We support further research that would develop a better understanding of why some patients do not improve after antibiotic therapy.
The inflammatory state of Lyme arthritis deserves further study. It often takes weeks or months to resolve; however, patients are often subject to multiple additional courses of antibiotic that are of unclear worth. Late Lyme arthritis, classically causing a swollen knee, has not been subject to a large, well-designed clinical trial to determine the appropriate type and duration of antibiotic therapy. Moreover, the 10-15% of patients who experience antibiotic-refractory Lyme arthritis have not been subject to prospective trials to determine the best anti-inflammatory strategies to resolve their condition. A multi-center study to address the best antibiotic treatment for Lyme arthritis would significantly help answer these fundamental questions and also lead to identifying patients who do not adequately respond to antibiotics and could enter a subsequent study for antibiotic-refractory arthritis.
It is essential that research on tick-borne diseases meet established standards for scientific rigor to ensure that study results are meaningful and can safely and effectively guide patient care. Attempts to make clinical trials more inclusive or pragmatic must not override the need to ensure that enrolled patients have Lyme disease based on widely accepted standards.
Clinical education on the diagnosis and treatment of tick-borne diseases must continue to rely upon sound scientific evidence and should not attempt to undermine medically appropriate diagnostic practices. Except in rare cases as is true with all infectious diseases, Lyme disease causes well-characterized presentations. Over-testing and over-diagnosis of Lyme disease can lead to patients who do not have Lyme disease receiving unnecessary and potentially harmful treatments. This practice can also cause clinicians to overlook and fail to diagnose other conditions, such as multiple sclerosis, cancer, or fibromyalgia, thus robbing patients of the opportunity to receive appropriate therapies. While IDSA continues to call for more research to improve diagnostic tools for Lyme disease, it is essential that clinical education be rooted in the best currently available evidence.
IDSA greatly appreciates the Working Group recommendations for increased research to improve Lyme disease diagnostics. Lyme disease is diagnosed by a combination of medical history, physical exam, and if needed, diagnostic testing. The current FDA-approved serologic tests work best for patients who have been infected for at least two to four weeks as this is the typical response time for the human immune system to make antibodies against a bacterial pathogen, such as B. burgdorferi. In patients who are just infected, the diagnosis is best made if the characteristic rash, erythema migrans, is present as patients are frequently seronegative—the human antibody-based immune response is not mounted with high efficiency in the first weeks of infection. Current, clinically-validated FDA tests are the best available tests for diagnosis of Lyme disease when the characteristic rash is not present. Scientific advances areneeded to improve testing strategies for the earliest phases of Lyme disease.
As serologic tests may remain positive for decades after successful treatment of Lyme disease, development of a test that provides supportive evidence that a patient has been microbiologically cured of infection would be of great benefit. Particularly for a patient who has persistent symptoms after antibiotic therapy, this would assist in guiding their clinician to avoid unnecessary additional antimicrobial therapy. IDSA has long advocated for increased funding to derive more accurate and specific diagnostics which would significantly reduce misdiagnosis and link patients to effective treatments more quickly.
Significant strides have been made to support the development of new diagnostic testing procedures. The NIH and CDC initiated a Serum Reference repository in 2008 and, at the end of 2011, began making standardized Lyme disease cases with serum samples available to the scientific community on a broad basis for testing and comparison of new diagnostic tests. The repository enables comparison of newly developed and existing diagnostic tests under identical conditions using the same panel of well-characterized reference specimens. CDC is also developing next-generation direct diagnostic tests (e.g., biomarkers) to improve upon current serological tests. However, the development, validation and commercial distribution of new tests can take years and millions of dollars.
Access to Care Chapter
IDSA has grave concerns about the content in the Access to Care chapter. If the recommendations were implemented as written, they would essentially remove any accountability for physicians providing unproven treatments to patients who may or may not have Lyme disease. These treatments can be harmful, and the recommendations in this chapter would remove patients’ opportunity for redress and prohibit state medical boards from censuring these doctors or preventing them from harming additional patients.
While IDSA supports creating a federal repository of information on Lyme and other tick-borne diseases, it is critical that all of the information be evidence-based to ensure patients receive the highest level of care possible. Increased federal funding for responses to tick-borne diseases is vital, but this funding cannot come at the expense of funding for other diseases.
IDSA supports patient access to evidence-based, medically-appropriate diagnosis and treatment of Lyme disease including persistent symptoms that are safe and effective. The recommendations and policies outlined in this chapter would subject patients to faulty diagnostic procedures and dangerous, unproven treatments. We also oppose recommendations or laws designed to protect clinicians who provide harmful treatments. We are apprehensive about the potential impact of the recommendation to provide protections for doctors who follow “recognized guidelines.” The term is exceedingly broad and could easily be applied to guideline recommendations that lack sufficient evidence or are based mainly on patient preference such as the ILADS guidelines that give physicians broad latitude regardless of documented efficacy or safety. This recommendation was adopted by a margin of only one vote, by far the most contentious vote of the Working Group, yet due to the composition of the writing group, the report will contain no minority opinion on this issue. Broad protection for physicians who subject patients to substandard or even dangerous therapies will likely increase the number of patients who are harmed.
IDSA thanks the Working Group for its attention to tick-borne diseases and looks forward to the opportunity to help inform and advance evidence-based policy that will best serve the interests of patients and public health.
Thank you for the opportunity to share my thoughts. The states I lived in when I was bitten by lone star ticks included Northern Virginia, Maryland and the Flint Hills region of Kansas.
I have had the Alpha-gal allergy since February 2002. I self-diagnosed an allergy to beef and pork after numerous reactions, one which had me at the ER. An alert RN advised me that I wasn't allergic to "kaopectate", but what I had eaten that had caused me the GI problems I was trying to relieve with the kaopectate. None of my doctors believed it was possible that I was allergic to red meat; so on my own, I practiced haphazard avoidance, sometimes cheating with a bite here or there. My many symptoms and feelings of unwellness waxed and waned over eight years; I had reactions to lard and bacon grease, but many other symptoms including random itching, extreme reflux, heart arrythmias and angina (three ambulance trips to the ER and multiple heart tests showed nothing), pain in my liver/gallbladder area (I decided against sonograms and eventually this resolved), didn't seem related to this red meat problem. Only after diagnosis in 2010 and strict avoidance to eating any mammal foods did my symptoms begin to resolve.
The most challenging part of this allergy syndrome is not the changes it forced on my life, from not being able to eat at restaurants or fast food places, to not being able to cook what my kids wanted, to the fear and anxiety about food, about medicines (gelatin caps once caused anaphylaxis after several weeks of exposure). Not the holiday gatherings, pot lucks and ordinary socializing that I avoided because of stigma and, for several years, inhalation reactions that had become a problem. No, the most challenging aspect of alpha-gal is the sheer lack of information/education of medical professionals and how that becomes a problem when I need medical procedures or surgery. I was fortunate to find a good team at Johns Hopkins Wilmer Eye Institute, who helped ensure every eye drop, gel, anesthetic, prep, and post-surgical steroid drops would be free of mammal ingredients. A sympathetic and savvy dentist in Annapolis did the same for dental procedures. Although I had to travel two states away and spend $6K out of pocket to ensure my safety, I have had an uneventful colonoscopy/endoscopy, using alternative anesthesia and extra anesthesiologist support in an oupatient surgical center rather than the GI doc's clinic.
My biggest fear is that I will need emergency medical care and not be able to get the kind of attention and vigilance to alpha-gal allergy protection in an ER or ICU. Education of medical professionals is essential for people with alpha-gal to be safe. Likewise, alpha-gal allergy can present as severe GI issues, among others, like my heart symptoms - so a cross-disciplinary approach to physician awareness and education, involving allergy and immunology, gastroenterology, cardiac care, pharmacy, anesthesiology, dermatology, dentistry and more.
Hello, My whole life and that of my family have been changed by a single tick bite!
Approximately 10 yrs ago, my granddaughter and I walked through a batch of ticks! We picked off more than we can count. About 3 weeks later, we were at an event. We went out to eat. I ordered sausage. Several hours later, I started feeling week, then extremely hot and faint.
It was hot so initially, we thought I was having a heat stroke! I was feeling sick, and suddenly flushed! I went inside to cool off. I had the sudden urge to use the restroom. I didn’t make it even 3 steps before I passed out. When the ambulance came, my Blood Pressure was extremely low (50/40). I was taken to the hospital, where I had blood coming from the rectum. I was put in ICU and a colonoscopy was done. They found no reason for this event. They said possibly the sausage was bad.
I kept having doubling over pains in my side. The doctor could not explain it, so decided to do exploratory surgery to find out why. They found nothing that would cause the pain! Doctors became suspicious that I was pretending to have these pains. Off and on for 7 years, I would have episodes of sudden need to use the restroom with a pain level of about 7or 8 out of 10. Getting extremely hot then my BP would drop extremely low and extremely quickly. I thought I was passing out because the pain level was that high! At times, I could only lay on the cold tile floor and put my feet up while applying a cool cloth to the back of my neck. Doctors could not find anything.
One cardiologist said, “very simple, don’t strain when you use the restroom and you will quit having these episodes!” Another said, “are you sure that you don’t need a counselor about depression?” I had NOT been depressed! Apparently thought I was needing attention and needed counseling because of it!
After getting bit again by yet another tick, I awoke one morning at about 4:15 am needing to use the restroom. Sudden pain level of a 8-10. My blood pressure dropped. I hit my head on the shower floor railing. (I still have an indentation in my skull). I was in and out of consciousness for about 15 minutes before my husband found me. My BP was 50/42 when the ambulance arrived. I was taken to the nearest hospital and placed in ICU for 3 days. (The whole time on a liquid diet of beef or chicken broth, jello and juice).
As they were getting ready to release me, I spiked a HIGH fever and was aching all over. A friend recommended the hospital do a full tick panel. They started meds and took the blood sample. I was there another 3 days, again on a liquid diet including beef and gelatin. The blood panel exposed Ehrlichiosis. It did NOT EXPOSE nor was testing for Alpha-gal done at this time.
I continued to have unexplained episodes. NEVER had ANY hives. Was always a sudden urge to use the restroom. Sometimes nauseous, extremely hot, sweating and pains equal to labor pains. Blood pressure dropping to point of passing out.
The final straw was 3 years ago, I ate a hamburger on Saturday evening. I was visiting at my granddaughter’s house, when I had to use the restroom. I started having the pain in my bowels area so I called for someone to get my husband. I passed out and was in and out of consciousness. He immediately called 911. When the ambulance came just minutes later, my BP was 50/40. I was less than 5 miles to the hospital. Halfway there, the attendant told the driver to step on it, “we are losing her”. The last thing I heard for 1.5 hours. If I had been at our house 45+ miles away, I would not be writing this today!
We as a family decided ENOUGH! I limited my beef and pork thinking that might be a problem until we could be seen at Mayo Clinic in Rochester. It took several trips.
I was examining my test results over the second weekend. When I noticed my Trytpass levels were high. I had been fasting, so how could I be having an allergic reaction? I was scheduled for an allergist and a cardiologist.
After hearing my symptoms and checking my records, a blood test for alpha-gal Test was ordered. The cardiologist agreed with this diagnosis as there had not been found one reason that my cardio was causing these episodes. I was advised by the allergist to move within 20 minutes of a hospital as we currently were living over 45 minutes to one. So my family packed up our home and moved in closer to a hospital. The home that we bought to retire in, to spend out last days. The house we had just spent thousands in to remodel and fence for our horses and other animals. The home our granddaughter and family called home with us!
After diagnosis, I eliminating beef, pork, venison and lamb from my diet. Those episodes have lessened. Have they stopped, NO! But when I have one, I can always pinpoint it to something mammal! My recent one was a juice I love, it had Vitamin D aka lanolin. I had an anaphylactic reaction to it. I have worked with my medical team and we have come up with meds that have been successful so far in heading an anaphylactic reaction off rather quickly.
I have eliminated all beef, pork, lamb and venison from my diet. I don’t currently react to dairy all the time but occasionally, so I have eliminated most dairy.
I have had 1 fumes reaction. Sitting down wind from the grill on 4th July. About 15 minutes and I started feeling light headed. I took Diphenhydramine and sat away from the grill. About 30 minutes later, I was fine.
Lack of education for the medical staff has prevented the diagnosis of Alpha-gal for over 7 yrs. There have been a number of times that I was critical and timing was important in getting treatment. If the first hospital had been educated to Alpha-gal, or the second or the 3rd. Or the doctors I initially saw at Mayo Clinic, it could have saved many dangerous episodes, time and money. I lost track of how many colonoscopies were done in the 10 yrs! How many test and blood work ups done to find NOTHING!!!
When I first was diagnosed with Ehrlichiosis, I googled it. It took me to the CDC webpage. I read about all of the tick borne diseases listed there... there was NO mention about alpha-gal!! NOTHING! There still is NOT!!!
The allergist that I finally saw at Mayo had attended a lunch seminar on Mass Cell Activation Syndrome. The speaker started out with a BRIEF explanation of alpha-gal. I had all the symptoms except the hives! At this point, I had seen over 15 different doctors!! This was 1 doctor of the 15 that attended the seminar!
My own family didn’t believe I was really having these episodes (since I am usually in the restroom when I am having them). My mother wanted permission to talk with my husband about his neglect of her daughter ...as I must need attention desperately to pretend to be that sick!
She was a witness to a reaction to candy with gelatin and a cookie made with lard. She now knows.
I can’t go out and eat like I used to. Our family get togethers are held in a church so less chance of fumes reactions or cross contamination. I can’t use my favorite lotion that is no longer sold and I just paid a lot to buy 3 bottles from someone. I have to skip the sweet potato casserole with marshmallows roasted on them. The cereals with vitamin D added. My favorite juice has Vitamin D in it, so that is on the “can’t have” list!
Our granddaughter lives with us. She had her pans and utensils, I have mine. She stores her food in one refrigerator and ours in another. She doesn’t cook beef or pork in the house when I am in town. We travel so she cooks that when I am gone! So it doesn’t just affect me, it effects my husband, my children, grandchildren.
Our son’s youngest daughter got married... she had to make adjustments in her food to accommodate my food allergies or I would not have been able to eat at any of the 3 events she had. Her mom made my favorite dish. But in talking, out of habit put the crushed pork rinds on the top of the dish! Couldn’t eat it after she took all that time to fix it! She made egg rolls and I snuck one from her son who was guarding them with his life! I took one bite and the whole room yells GRANDMA... spit that out!!! It is BEEF!!! The turkey ones were in another pot! Couldn’t enjoy because I was afraid I would get sick from the beef ones!
I wonder, how many people die from this every day? How many coroners know about it? Do they test bodies for it? How many people have their gall bladders removed when it is alpha-gal? Or their appendix?
Thank you for hearing my story!
Mary from Chickamauga, GA
I am writing to express my frustrations as an alpha-gal patient when trying to acquire safe medication. A physician defaults to having the patient check with the pharmacist whom is often too busy to call the manufacturers which leads to the patient trying to chase down the ingredients. When a doctor writes the script he/she, quite often, is not aware of the ingredients. They suggest that I talk to the pharmacist. The pharmacist then looks up my allergy in the database to find that it doesn’t have a category. Each component has to be individually listed and manually entered. Often ingredients like glycerine aren’t specific as to whether they are animal or plant based. At that point, a phone call has to be made to the manufacturer of the drug which can be very lengthy. After identifying yourself there may or may not be a pharmacist working that day to answer your question. Sometimes they can’t give a solid answer as to where the ingredient is sourced from even with the NDC code. Other times the pharmacist may have to call you back days later. This results in leaving the pharmacy empty handed or calling your doctors office to have another script sent only to play the guessing game again. As a patient with no pharmaceutical background I have had to learn to navigate the health care world with thick skin, a load of patience and self-doubt wondering if medication prescribed to me by a health care professional could send me into anaphylactic shock. Education and accountability needs to be ramped up for physicians and pharmacists while drug manufactures need to be more open to revealing their ingredients in a more timely fashion.
Greetings to all and a sincere thank you for your effort to shed light on tick-borne diseases.
As I am discovering, my story isn't that unusual. I am 61 and live in rural Virginia. I live in farm country and keep animals on a few acres along the spine of the Blue Ridge. I have experienced many tick bites over the years, and have the scars to show. Ticks are just something we've had to live with it seems, forever.
I was diagnosed with AGAS two years ago after experiencing several episodes of anaphylaxis which required ER intervention at the local hospital. I knew at the time that I was going into anaphylaxis because I had done so once before...from a wasp sting 30 years ago, which nearly killed me. These symptoms...irregular heartbeat, respiratory distress, extreme anxiety, lapsing into unconciousness...were the same as those I experienced then. The medical staff examining me most recently couldn't tell me why I was reacting, or to WHAT I was reacting, but could only treat the symptoms of anaphylactic shock. It was left to me to discover just how my body was betraying me and how to stop it from happening again. How unsettling to know that at any time without warning one could go into anaphylaxis and die.
After the second such episode I took note of everything I had done and everyplace I had been on those days. Was it possible that I had been stung or bitten by an insect? Were there environmental hazards in common on both those days? Did I eat anything out of the ordinary on those two days? Did I eat the SAME meal on those days???
In answer... yes to the last question. I had a large portion of grilled beef, late in the afternoon on both days. I remembered a friend talking about an "allergy to meat" that he had developed some time prior so I called and asked him to describe his symptoms and their onset: Extreme uticaria (hives) starting with hands and feet and progressing onward to full involvement commencing 4-6 hours after consuming beef. EXACTLY the same as mine.
I took his advice and immediately ceased red meat and mammal products. I was seen by my doctor at the VA hospital in Salem, Virginia who has much experience in the diagnosis and treatment of Lyme disease and other tick borne maladies...including Alpha-gal allergy syndrome. He prescribed a prophylactic course of doxycycline in case of Lyme or other treatable disease, and also respiratory steroids and albuterol. He advised me to keep benadryl and other antihistamines and epi-pens always at the ready.
I am one of the fortunate ones. Circumstance and good fortune led me to a diagnosis and treatment fairly quickly. A good and well informed doctor led me through the maze without fail. I owe him much. Too many aren't so lucky. I have helped four of my friends to discover that they were also suffering from AGAS. One has had cardiac problems which may be tick-disease related, and another has since died from undiagnosed Rocky Mountain Spotted Fever.
I suspect that the number of people affected by these various tick-borne diseases is orders of magnitude higher than anyone has imagined heretofore. This has the potential of a national health crisis in the making.
Thank you for your efforts to dispel the darkness and make a real difference in peoples lives. May God Bless
I am Crystal Burns and I had been bitten by a tick when I lived in Mountain View, Arkansas. I am one of those unlucky people who are loved by ticks. I never thought in a million years that my life would have changed because of a tick. I was recently officially diagnose with Alpha-gal, but me and my doctor believe I have had this for ten plus years. I went from being a normal person with no allergies to my first anaphylaxis shock. At that point the doctors had no clue why it happened. Just told me to avoid anything new and be careful. After my second anaphylaxis I went to the ears, nose, and throat doctor in Batesville. They took my blood and called me saying avoid pork and beef. Still at that point no one knew what Alpha-gal was. Over the years I was able to avoid full anaphylaxis, but that didn’t mean I don’t have lots of odd allergy flare ups. Now that people know about Alpha-gal, they don’t eat or use lists and are getting better. But they are word of mouth from other sufferers. We need to know what can harm us. Our reactions are all over the place and we all have different reactions. But we need to know that we are safe. I have been hoof animal free for over ten years and I still test for alpha-gal. I am not one of the lucky few who grow this. I also now react bad to tick bites. They get to the size of a baseball. Alpha-gal is growing and we need more people who are willing to fight this battle with us. We need to know what products have hoof animals in them. Because living everyday with allergies suck and they are scary, and the fear of knowing anything we use or eat can end in death if we are not careful. After joining a alpha-gal group the things I have learned about things I use or eat could be the cause of my odd mini allergy attacks is eye opening and scary at the same time. And I want more information. I want to know that I am safe. A lot of people think and believe that allergies are a joke. But when you are in a hospital bed dying because your body is at war with something it doesn’t like is life changing. And not for the best. It’s hard for me now. I have become very OCD, I have two sets of dishes and pots and pans in my house. One for me and one for the meat eaters in my family. I have a shelf in my Refrigerator that meat never sits on. I never eat out because I am always in fear of cross-contamination. I am afraid that the staff doesn’t really know what’s in their products. I wear gloves to cook meat for my family. And every day I am always reminded if I screw up or if someone else screws up I could have another anaphylaxis shock. Every day I wish I was normal again, I wish I could forget the feeling of my heart slowing down. But I can’t. None of us can. But we can find a bit more ease with the help of those who want to fight for us. And to find answers for us. And make products held accountable to let us know we are safe if we buy their products. I thank you for your time!
Always, Crystal Burns
First I’d like to thank the Tick Borne Disease Working Group for allowing and hearing the public comments regarding their experiences and recommendations to this committee. In the past I’ve written and spoken to this group about the many GAPS in respect to Alpha Gal Syndrome.
I was diagnosed in April 2017 with Alpha-Gal Syndrome after 5 to 6 months of battling the common escalating symptoms of AGS—extreme fatigue, joint pain, rashes, vomiting, diarrhea, GI distress and bloating, angioedema, urticaria, and four anaphylactic episodes (two nearly fatal). On 2/12/18 I was given the opportunity to address this committee regarding serious GAPS in the medical, pharmaceutical, emergency services, and food industries not only for those of us with AGS, but for many afflicted by the 20+ various tick-borne illnesses. GAPS that include: 1) Better education and resources for the medical industry, 2) Educating Physicians, 3) Educating First Responders, Paramedics, and Emergency Room personnel, 4) Educating Pharmacists and 5) Accurate and FULL disclosure of all ingredients on food labeling. I also emailed written statements for the 5/15/18 and 7/24/18 meetings. In those statements I wrote in more detail about the GAPS I’d spoken about in the February meeting. Once again, I’d like to address and expand on some of those GAPS as well as some new ones that I have been affected by and concern me.
As the Founder and Administrator of the Alpha Gal Encouragers – NW Arkansas support group and a Moderator of several other AGS support groups for over the last 16 months I’ve come to realize just how much the Alpha Gal Syndrome experts either don’t really realize regarding their patients, don’t really track accurate patient data and/or don’t listen to their patients. And this observation doesn’t even begin to scratch the surface regarding the VAST number of doctors, nurses, hospital staff, emergency services and pharmacists who have never heard of AGS, think it’s too rare to have or just plain ignore their patients requests to be tested.
For example, an April 2017 research article by the Journal of Primary Care & Community Health titled the “Diagnosis of Life-Threatening Alpha-Gal Food Allergy Appears to Be Patient Driven” reported “… (21%) were diagnosed within a year of experiencing symptoms, of the remaining 22, mean time to diagnosis was 7.1 years. In over 100 medical encounters (including 28 ED visits and 2 urgent care) the correct diagnosis or effective diagnosing referral occurred less than 10% of the time.” Their conclusion? “The medical community is challenged to stay abreast of emerging and newly uncovered illnesses through traditional medical literature communication channels. Presently, patients more often discover a diagnosis of alpha-gal allergy by using information resources on their own than by presenting to the ED with anaphylaxis.”(1)
This is what we deal with. Doctors who have no current education or knowledge of AGS and the various life-threatening symptoms we experience. From extreme fatigue, swelling, hives, GI pain, anaphylaxis. Many have been misdiagnosed and/or treated for years with chronic fatigue syndrome, lupus, IBS, GERD, idiopathic hives, idiopathic anaphylaxis and even had their gallbladders removed with no relief. Doctors have told many our members their symptoms (reactions) are all in our head and they need to seek mental healthcare.
Another example, many of us also experience arrhythmia and tachycardia, but that isn’t a known or side effect – or is it? Yes it is. Granted, as the article states, “Researchers find link between allergen in red meat and heart disease. The evidence for a link between red meat allergens and coronary artery disease is still preliminary, the researchers noted, so they plan to conduct detailed animal and human studies to confirm their initial findings.”(2) At least someone is listening and doing the research. They found, “In the current study, researchers showed for the first time that a specific blood marker for red meat allergy was associated with higher levels of arterial plaque, or fatty deposits on the inner lining of the arteries. The blood marker they identified is a type of antibody (immunoglobulin or IgE) that is specific to the alpha-Gal. Using an imaging procedure, the researchers found that the quantity of plaque was 30 percent higher in the alpha-Gal sensitized patients than in the non-sensitized patients. These plaques, a hallmark of atherosclerosis (hardening of the arteries), also tended to be more structurally unstable, which means that they have an increased likelihood of causing heart attack and stroke .”(2)
Our question is; How does the medical community continue to educate doctors, nurses, hospitals, emergency room and emergency services personnel to recognize the various symptoms and reactions as being Alpha Gal Syndrome and properly diagnose them? Too many health care professionals aren’t really listening to their patients. The longer we are misdiagnosed, the longer we are treated with drugs and medications that contain mammal by-products that make our over health and reactions to worse. Even when we are properly diagnosed by a doctor who may be familiar with AGS, then we have to deal with the drugs and medications. Most doctors and pharmacists don’t believe ‘trace amounts’ of mammal will cause reactions; it’s all in our heads or we need to stop going on the internet. As patients we know for a fact trace amounts of mammal (i.e., gelatin, magnesium stearate) in supplements, medications and personal care products used topically can cause reactions.
Studies show we can have severe allergic reactions, including anaphylaxis to medications and vaccinations. “Anaphylaxis after zoster vaccine: Implicating alpha-gal allergy as a possible mechanism” Dec 2016 (3) “Anaphylaxis after vaccination in a pediatric patient: further implicating alpha-gal allergy” June 2018 (4) “Alpha-gal found to be both a medication and red meat allergy” April 2018 (5)
Knowing this, it took me a year to get up the nerve to have a very necessary oral surgery done due to my reactivity to AGS. I finally had to have it done. I simply couldn't tolerate the constant pain and sinus problems any longer. Postponing my surgery is costing me double now, two surgeries instead of one and twice the price. None of which is covered under my dental insurance. My oral surgeon has been awesome. He'd heard of AGS or had and AGS patient until I met with him last year. He kept all the information I'd provided last year in my file and I provided him with even more data last month about safe sutures, anesthesia, medications, etc. He did all the additional homework and worked with the pharmacist to make sure all of the medications and things used during the surgery were mammal free. The sinus lift membrane and bone grafts used were both human cadaver. With the root of the tooth in the sinus cavity, the concern was the tooth may have already punctured the sinus. The x-rays indicated possible infection in the sinus cavity between the sinus and the jawbone. The surgery went much better than expected. He was able to extract the tooth, clean up the infection, do the sinus lift and the bone graft in the jaw through one 5 stitch incision where he removed the tooth. He did his homework and kept me safe, meds and all; even down to the tape that held down the IV. For those of us with AGS ... it's not a choice, it's a necessary priority in order to be safe from reactions.
On Sept 4, 2018 I was invited to attend a practice session of a presentation to be given by Dr. Hubbell titled, “Not So Innocuous Medication Filler in Patients With Alpha-Gal Allergy: Strap in: You're In For An Itchy Ride". Dr. Hubbell was one of 3 UAMS residents that were selected to make their presentation at the ACP meeting in Little Rock a few days later. She was fascinated by the knowledge and information Dr. Tina Merritt, Dr. Curtis Hedberg and I were able to provide regarding AGS. In one way it was exciting to know that a new doctor knew about AGS and how we can have severe reactions from hidden mammal in medications. On the other hand, it was disturbing that she found out through the patient experience she based her report on. The patient was admitted with extreme GI complaints. The attending physician, knowing they had AGS, put the patient on a medication, despite the patient stating he had had allergic reactions to that particular drug previously. He was put on the drug because hives isn’t typically a side effect. Needless to say, the AGS patient, who knew he’d reacted to this medication before, did again which made his treatment even more difficult. He was removed from the drug and more research was done to find medications that were mammal free. The conclusion to her report? Doctors need to be more aware of AGS patient’s medications and treatments since they can contain mammal by-products that may cause serious reactions. She also noted they need a central medications/ingredients database to determine if they contain mammal sources.
As I said, it was a bitter-sweet victory for us as AGS patients, but at what cost? I am so glad she was chosen to report to a group of her peers in Little Rock. She reported she got a very good response at her presentation, with a lot of questions being asked. So I ask, just what can be done to continue to educate doctors, nurses, hospitals, emergency room and emergency services personnel to be able to recognize the possible medical treatment problems that can arise when treating those of us with AGS? So many doctors, surgeons, anesthesiologists, pharmacists, etc., not only don’t listen to and/or take their patients AGS warnings seriously or they are dismissed and ignored completely. AGS is considered rare and ‘just a mammal meat allergy’; ‘surely that doesn’t include trace amounts of mammal in medications or vaccinations’. But it DOES include trace amounts. There must be some way to better educate medical professionals to recognize, properly diagnose and treat our reactions that include properly vetting medications and treatments. Not doing so can lead to more serious complications in their patients. Part of this recognition really needs to begin with those medical professionals who treat AGS patients most often. Unfortunately even many of those doctors don’t acknowledge trace amounts in medications can cause reactions.
I was pleased to read in the TBDWG report to Congress on page 54, “Recommendation 6.5: Improve the education and research on the pathogenesis of alpha-gal allergy, also known as the tick-caused “meat allergy”.(6) However there are some things I’d personally like to see change. Since 2015-16, Alpha-Gal has been recognized by some researchers as Alpha Gal Syndrome. Now in 2018, both the CDC and the Mayo Clinic recognize “the tick-caused “meat allergy” as Alpha Gal Syndrome. Why? Because, it’s much, much more than ‘just an allergy’ or ‘just a meat allergy’. It involves MUCH more than just eating and ingesting mammal meats. I hope the TBDWG will also start using the terminology ‘Syndrome’ in its future reports. If only for the sake of uniform recognition in the medical and research fields.
The report also states on page 54, “Fatalities are rarely seen, but it can be life-threatening with anaphylaxis. Patients react to a carbohydrate antigen in all non-primate mammalian meats, gelatin (highly sensitive individuals may react to bovine serum albumin in a drink or gelatin in a capsule), or very rarely, dairy. Personal care products, certain medical products, and nutritional supplements are not typically implicated in alpha-gal allergy, although anecdotal cases have been discussed.”(6)
First I’d like to ask, how do we know fatalities are rarely seen? We don’t. One, AGS is too new and not recognized and properly identified by most doctors. So, how many people may have died from anaphylaxis that could have been undiagnosed Alpha Gal Syndrome? We simply don’t know.
Next, I want to address the “very rarely, dairy”. I’m unsure what that observation/statement is based on. I don’t believe there has been any tracking or documentation yet as to how ‘rare’ dairy issues are. In our support groups we’ve had several polls addressing just how many of us have reactions to dairy. The majority of those polls show that although dairy reactions are usually not as severe as our ingesting mammal meats, 50 to 60% suffer from some form of reactions to dairy from mild to extreme bloating, GI pain, diarrhea and hives. We need more studies and research done to show these reactions are more widespread than being reported. Hence, the need for much more education and research as suggested in the report.
About the last part of the paragraph cited above, “Personal care products, certain medical products, and nutritional supplements are not typically implicated in alpha-gal allergy, although anecdotal cases have been discussed.” I truly wish members of the committee would take the time to join the large national and international AGS support groups and listen to the patients. Then they might understand it’s not just a few ‘anecdotal’ cases. I, for one of many, had problems with nutritional supplements with gelatin and personal care products that kept my system and skin constantly agitated until they were eliminated and replaced with vegan.
Finally I’d like to address the need for more comprehensive food labeling in order to protect those of us with AGS. Food and Drug labeling often lists allergies to certain foods such as nuts, tree nuts, milk, gluten and even soy, but there is no mention of mammal by-products. Many foods contain hidden forms of mammal and use terminology not recognizable by lay people. Those trace amounts of mammal by-products can and do cause many of us to have reactions and become extremely ill. There are symbols for certified gluten free and vegan products. It should be simple for there to be some sort of symbol certifying there are no mammal ingredients. And vegan isn’t what I mean. We can eat chicken, turkey, emu, ostrich, duck, fish and seafood, etc. with little or no problems. That is as long as the chicken, turkey, shrimp, fish etc. are not pumped up with or fed mammal ingredients. Proper labeling is very important to those with other life threatening allergies. Hopefully soon, it will be seen just as important for those of us with AGS.
There is one labeling ingredient that is a must, especially for those of us with AGS - Carrageenan. Carrageenan is derived from a red seaweed, also known as Irish Moss. It is considered vegan, so many vegan products that make some of us extremely ill don’t list it as an ingredient. It’s listed as natural flavorings or emulsifier. I for one am one of the AGS people who have extreme reactions from carrageenan that include vomiting, diarrhea, extreme GI pain and days of bloating and inflammation. What many don’t realize is carrageenan has the same molecular structure, galactose alpha 1,3 galactose (7) that we have become allergic to in mammal meats. (Refer to the article link “The common food additive carrageenan and the alpha-gal epitope.”(7) Many of us hoped carrageenan would be banned in at the very least organic products when in November 2016 Cornucopia reported “On November 17 at the National Organic Standards Board Meeting in St. Louis, carrageenan was voted to be removed from the National List of approved additives in organic food!”(8) However in April 2018, Cornucopia News reported, The National Organic Standards Board (NOSB) “voted to disallow carrageenan, an additive known to cause intestinal inflammation, in organic production beginning this year. Carrageenan is used as an emulsifier, a thickener, and to improve “mouth-feel” of products—meaning to make watery products, like plant-based beverages, taste creamy. It is not essential to the production of any product on the market, as evidenced by the number of companies that have been able to remove it from their formulas. USDA Secretary Sonny Perdue has interceded on behalf of industry lobbyists and reapproved carrageenan, betraying the public trust and the recommendations from the NOSB.”(9) Over 5 years ago, in a 34 page report in March 2013, The Cornucopia Institute reported the health dangers of carrageenan being added to our foods stating, “Carrageenan is a common food additive extracted from red seaweed. For the past four decades, scientists have warned that the use of carrageenan in food is not safe. Animal studies have repeatedly shown that food-grade carrageenan* causes gastrointestinal inflammation and higher rates of intestinal lesions, ulcerations, and even malignant tumors.“(10). Since carrageenan is commonly used in foods such as non-dairy ‘milks’ and other products as a thickener, emulsifier or stabilizer, needless to say, carrageenan is a big concern to the 50 to 60% of us who also have dairy reactions along with AGS since we can’t tolerate dairy. So besides the AGS galactose alpha 1,3 galactose molecule connection with carrageenan, there’s how it is used so often in non-dairy products.
Once again, I’d like to thank the Tick Borne Disease Working Group for allowing and hearing the public comments regarding their experiences and recommendations to this committee.
Jennifer Burton, Rogers, AR
Founder and Outreach Coordinator,
Alpha Gal Encouragers - NW Arkansas
Dear Working Group -
I want to first thank the members of the working group for their dedication and efforts put forth on this long overdue need to review and improve the US Tick-borne Disease Research process. As someone diagnosed with tick-borne conditions (TBCs), I am pleased to see so many seemingly small and insignificant recommendations made because I have no doubt the impact will be enormous as we move forward.
I have to be honest though and express my concerns that it’s taken two years to clean up what I feel is basic, elementary language which remains inconsistent in many areas of the document. It’s shocking to see how much was out of sync and how hard we all had to work to get it to where it is now in 2 years. That’s a long time for those of us who are unwell. These inconsistencies in terminology may inadvertently block key research efforts due to lack of funding which in turn may uncover the missing link one day in solving this puzzle. I have previously stated areas in need of updates (TBDs from TBCs, or where “Lyme” is only mentioned in association with a recommendation that would clearly benefit ALL tick-borne conditions.).
Going forward, it’s important to capture as much data as possible, to better allow the appropriate funding on this national epidemic. I’d like to point out a few gaps to consider. Today, I choose to leave out the endless report references and supporting facts. This isn’t rocket science…..Most everyone reading has lived it personally and/or professionally and I would hope by now has a decent handle on numbers and meaning here.
- There is well known dysfunction in the basic testing process for TBCs. Its clearly noted in the recommendations which is fantastic and I again applaud you for this admission. From healthcare providers understanding the symptoms to knowing which tests to requests, down to properly interpreting the results. Help is desperately needed in this area. This is where everything starts - after the tick bite. In addition, there is a gross absence in knowledge surrounding timing of the initial testing and/or when other testing would be helpful to properly diagnose and treat a specific TBC.
- Suggested solution: There must be an immediately revised and accessible guideline for all healthcare providers so they better understand which tests to run and how to interpret results and the many options for treatment. The formation of a consultation group may be helpful and used for data collection to assist researchers as well.
- Data collection has been historically inaccurate and lacking in many cases. This too has been captured in the recommendations within the 1st report. The number of cases reported to the CDC by healthcare providers is grossly understated. The Working Group has openly recognized the many reasons which range from lack of knowledge, understanding of importance, fear of unfavorable treatment from insurance, licensing, and peer ridicule, as well as policy in hospital networks.
- Suggested solution: Offer incentives for reported cases along with easier reporting methods for all healthcare providers. In the long run, the cost of treating TBCs sooner rather than later will cut healthcare costs. Years analysing the thousands of misdiagnosed cases and assessing the costs of unnecessary testing, mis-diagnoses and treatments, loss of life, jobs, and relationships, in comparison to costs associated with running FULL TBC tests, costs of antibiotics, nutritional support and detox methods to help support the human body is simply not needed at this point. You need only a few cases and no more than 6th grade math to prove this out easily enough.
- Each condition presents it’s own challenges. Speaking solely on Alpha-gal Syndrome (AGS) there is an enormous amount of work yet to be done in data collection, and proper support for the patients. What is happening to a large population is left untreated, unaddressed and certainly not properly documented, for a number of reasons.
- Many patients have given up working with healthcare providers because their provider simply doesn’t even know where to start! They are not trained on matters of food processing or pharmaceuticals. Often time, the patient has helped themselves more than their treating physicians, nurses, pharmacists and hospitals from internet research and support from the thousands with the condition. I admit, patients can become mislead and develop unhealthy situations from this approach. However, what choice have they been left with? This leaves patients in greater risk in many ways I think we can all agree in many ways. In my own situation, my nutrient levels were severely low and I thought for sure it was my thyroid but it was simply an imbalance in nutrients and… Lyme Disease gone untested, untreated and undiagnosed for 3 years. Had my primary care physician been more willing to test and treat or had I given up sooner, I wouldn’t have gotten as sick as I had. Hair loss, diminished energy which affected my job, chronic pain throughout my body, and lost time with my family and friends due to poor health was the cost for me. It took months to feel better, and I’ve never been the same and currently dealing with a flair up it seems according to my healthcare provider and symptoms. Leaving failing health unaddressed opens the door for more complex problems down the road. (Think home repair here. When the leaky window isn’t fixed, mold is introduced, floors and carpeting become damaged, stained, possibly warped and before you know it, you need to remodel the entire room! Floors, walls, the original leaky window and possibly the room below! Even though the room may look beautiful in the end, there may always be a scar of some sort that is a reminder of what went terribly wrong - uneven floor board, or door that won’t close properly now as a result of the floor warping. The hard cost, time and stress it causes everyone in the household is far more than if the window was simply fixed with one visit from the correctly trained specialist. If the homeowner knew s/he could get quality help, the call would be easier to make and avoid a bigger, more costly expense down the road.)
- Labeling is a major issue as mammal is such a commonly used component in many foods, pharmaceuticals and products. A petition to include AG as a major allergen was filed and denied basically because the data wasn’t there to support the need. Please see bullet #2. Data collection has to improve quickly! The ripple effect is wide! Allergic responses vary person to person and instance by instance. It has no “muscle memory” although it presents similarly for the most part. That being said, AGS individuals can tolerate dairy one day, and all the creative names, but suddenly might start having symptoms that aren’t necessarily hives or anaphylaxis which would easily indicate a reaction is occurring. It might just display as GI distress (diarrhea, acid reflux, upset stomach, cramping,), or simply a hoarse voice. (see food allergy symptoms for more info. If needed.) Of all people, the Alpha-gal Community fully appreciates that fully disclosing how animal parts are used might not be appealing to the American consumers. We understand! It's been quite eye-opening and is not dinner conversation most enjoy. But, the fact is, with more and more becoming allergic, it’s negligent to not move this conversation along faster than it has to date. It is important for the thousands of others with meat protein allergies as well as the AGS patients.
- A great opportunity is being missed to capture data on new mothers and their babies in the AGS community. Please work on funding for this immediate need. Many babies have been born of mothers who were diagnosed prior to inception and also “infected” during pregnancy. Many experience cease in symptoms only to find it comes back after pregnancy. Wouldn’t that be helpful to better understand the mechanism that boosts that super power within us? Wouldn’t it be helpful to understand why some babies are symptomatic upon birth or shortly thereafter? Blood, tissue and stool samples are all lost because a system has not been put in place on a condition known for years now and growing at an incredibly rapid rate. At what point in development does the change occur? Can we stop that so an innocent child doesn’t have to suffer a lifetime of allergic reactions? What is the cost to support a child like this? Special medications, compounding needs, special schooling, dietary needs - the list is endless. What is the estimated cost of average ER visits for anaphylaxis? Time is critical here. The sooner we start studying this puzzle piece the better!
With all the above being said, it is my hope that the Working Group consider the following:
- Involve a member of the Alpha-gal research group, or ask for their recommendation if they are unable to commit to the task, or assist in a consultative manner.
- Involve more private sector researchers, labs or practitioners working directly with ticks and TBCs. Even if it’s a short-term consulting role.
- Involve somebody with the power to effect labeling changes from the FDA.
- Involve another editor who can follow along in detail and has the capacity and distance from the subject matter to catch inconsistencies in the language used when writing recommendations or proposals. A private sector individual perhaps.
- Instill incentives for reporting TBCs. Consider penalties for non-compliance.
- Directly ask healthcare practitioners and the public in endemic areas for input on key topics being addressed.
Considering that Alpha-gal was not on the radar of any expert on the Working Group, and it was not included at all in the official US Tick-borne Research efforts, it’s quite clear there is a huge gap in knowledge amongst the panel of experts reviewing the experts. It's my hope “Other Tick-borne Conditions” are included in the ongoing discussions.
I, along with the thousands diagnosed with Alpha-gal Syndrome are so deeply appreciative for your willingness to listen to ALL who have been affected by a tick-borne condition. We know, your willingness and inclusion of AGS and “other conditions” will only benefit the greater research needs for the devastating health challenges associated with most any tick-borne condition.
We are stronger together.
I was diagnosed with Alpha gal allergy in September of this year. I was bitten by a tick which did have a white spot on its back on Memorial Day weekend. I began having reactions the first week of July after a bee sting. My reactions became Anaphylaxis reactions in middle to late August. At which time I saw an allergist and was told I am allergic to red meat/mammals. I was just told not to eat the meat. Oh my, how so very much more complex I have found this condition to be than just don’t eat the meat. Everyone needs to be aware that animal products and by products are everywhere. Even though I was not eating the meat I continued to have reactions. I discovered by keeping a food journal that my reactions were happening on days that I had taken Excedrin Migraine gel caps. I found out I am very sensitive to gelatin. I would have never known without doing hours of research on my own. Animal products and by products are in everything from shampoo, make up, medicine, toothpaste, even dental floss. This is information that desperately needs to be shared with patients who have this allergy, medical providers, pharmacists, and families.
I recently went in for out-patient surgery. I spent my time explaining my allergy to everyone including the anesthesiologist. She assured me after a call to her pharmacist that we were perfectly safe with Lactated Ringer Solution, which was given in my IV. 1,000 mg of Tylenol was also given to me without a gel coating which I was assured was safe. Within 30-45 mins I was in a full anaphylactic reaction. I had not eaten in over 16 hours. Surgery was cancelled and I was sent home quickly with hives still all over my body. The staff had never heard of Alpha Gal allergy and didn’t think it was a big deal since I wasn’t eating a steak before surgery. These are our lives that are at risk when we undergo medical procedures or have a medical emergency. Information and training needs to be made available. Things as simple as getting a cut that requires stitches could prove to be deadly for an alpha gal patient if they use typical cat product stitches. I can t imagine going in for a medical emergency while unconscious what the risk might be. This allergy was changed my life forever!
I am writing you all today to basically beg for your funding for more research for alphagal. This allergy or syndrome, whichever you want to call it, just plain and simple needs more research. I am only on one alphagal Facebook page and every week there are more people joining that are finding out they have this horrible allergy and it is growing fast. More people need to be educated on alphagal, Doctors, allergists, insurance companies, pharmaceuticals, the list is endless.
My story starts in November of 2017 when I started noticing my first signs of alphagal. I ended up with bad stomach cramps after eating pork ribs. I ended up on the toilet throwing up in a bucket. My next incident was about 4 months later. I woke up in the middle of the night while camping. I had terrible stomach cramps and again vomiting and diarrhea. I was still not able to pinpoint what this was coming from since the onset of symptoms was 6 hours after I consumed anything. Third incident, I went out to eat. Came home then got hives and head to toe itching. Fourth incident, again another burger and hives head to toe. I had enough at this point. I called my dr, and went to see him and have me tested for alphagal. The only reason I had a feeling it was alphagal is because my sister's friend 2 towns over has had it for at least 6 years now. I remember getting bitten by a tick that November in my yard. I am positive for the alphagal allergy with blood tests. So far I am unable to eat beef, pork, lamb and I am now allergic to milk. I have fume reactions at work. I work in a grocery store. The smell of raw beef makes me gag and I have to leave the area. When beef cooks, my throat starts to close up. I also have a sensitivity to cleaners which can also have mammalian ingredients. I get dizzy when I smell them. I also cannot have caraggeen which has the same molecular structure as alpha gal carbohydrate. I get bumps all over my legs when I eat it. You see there is a lot to know about alphagal and not everyone who has it experiences the same symptoms. I am an extreme case. But we need more education, research and funding so doctors can say, "Oh this is more than just staying away from eating meat." Some form of mammal is in so many things. White sugar is processed with animal bones! It makes my teeth tingle when I eat it! Just living in constant fear of what I cannot control in my environment and in deciphering ingredients on a box of donuts is daunting. Please help us! What if this was you or your son or daughter or brother or sister? I was basically in anaphylaxis multiple times before even diagnosing myself and getting an epi-pen, and I am a lucky one who diagnosed myself rather quickly. In closing, we just flat out need more education and funding for this upcoming "epidemic".
Thank you for your time.
Prior to being bitten by a tick in 2010 and later being diagnosed with Alpha Gal, I had been very healthy with no major health issues. In 2010 I started experiencing light headedness/fainting/brain fog/high & low blood pressure/nausea/vomiting/cough/hoarseness/shortness of breath/severe gastro issues/hives/blurred vision/facial swelling/itchy palms & soles of feet/hives/itchy scalp/hair loss etc. I always felt that the reactions I was having had something to do with the tick bite in 2010. When I would ask physicians if the tick bite could be the cause of my reactions, they would ask me if I was having any fever. NO, no fever! That was probably the only reaction I was NOT having! Their response would be that ticks do not cause the reactions I was experiencing. I was not convinced.
In 2016 I broke out in hives. After seeing an allergist, I was diagnosed with an allergy to trees/coconut/grass/wheat/nuts/peanuts/eggs/dairy/beef/pork, well let’s just say I was allergic to everything they tested me for, but I had never heard of anyone being allergic to beef, or pork, so I started researching this allergy. I found information on Alpha Gal allergy caused by a tick bite! I immediately called my allergist and asked to be tested for Alpha Gal. I tested positive. Honestly, hearing my allergist’s diagnoses was not my most frightening moment, the most frightening moment was having to explain Alpha Gal to my primary physician!
Since being diagnosed. my life has changed drastically! I have found that , like my physician, most people have never heard of Alpha Gal! I am so thankful for my husband who has been my rock, the Alpha Gal Facebook groups, who have become my second family, and the Robert Woods Johnson Medical School who has taken the time to researched my medications to make sure they are safe for me! So much needs to be done to spread the word about Alpha Gal! We need more funding to research this devastating disease! It’s extremely frightening when you suddenly realize that most of the population, including physicians/nurses/emergency rooms/health departments/major drug companies/food manufactures etc. people who you depend on to have answers in your time of need, don’t have the answers to give you!
I would like to share how Alpha Gal has changed my life…
- Alpha Gal is constantly on my mind
- I now wear an Emergency Bracelet at all times.
- I can no longer eat out at restaurants, for fear of cross contamination
- I can no longer attend most get togethers with friends for meals/ BBQ’s / parties/ etc.
- I have to excuse myself when someone gets to close to me wearing perfumes/body sprays, etc. for fear I’ll have a reaction
- I cannot be in the same area where beef/pork are being prepared due to fume reactions
- I must call manufacturers of all food products I consume to confirm ingredients and words like natural flavorings, enriched, etc.
- I must call manufacturers of all medications I take to be sure there is no mammal/mammal by-products
- I can no longer use most cleaning products/detergents/ candles, air fresheners, etc.
- I had to change all my beauty products to vegan due to hives/facial swelling/hair loss, etc.
and most importantly …..
I MUST NOW CARRY AN EPI PEN WITH ME AT ALL TIMES IN CASE OF AN ANAPHYLATIC REACTION!
And the list goes on and on….
Thank you for taking the time to read my story.
Mountain View, Arkansas
My AlphaGal story began in June of 2010. Just after going to bed one night, I had a spot on my leg that begin itching like a bug bite. I got up to put some Benadryl cream on it, but then I had a spot break out on my hip, then my neck began itching. I called for my husband to help me because within 10 minutes I was covered in burning, itching hives from my scalp to my feet. He was alarmed because he saw them ‘wheeling’ and said it looked like bugs crawling under my skin. We had a pouch of Aveeno Oatmeal bath on hand, so he ran me a bath. The warm water seemed to make it worse instead of being soothing. I used up my tube of Benadryl cream and began taking Benadryl pills. I felt horrible besides just the insane itching! We came close to driving to the ER, but after an hour I had begin to feel a bit better. We went back to bed but I had trouble sleeping due to esophageal spasms that made me wonder if I had heart problems. This episode repeated itself a couple of times that week. By the third time, I had noticed that it started with stomach pain. I would take Tums, then when that didn’t help, I took an acid reducer pill. So I knew to take Benadryl pills along with the stomach acid pill after that. I made an appointment with my GP and he said it was allergies, giving me a prescription for a round of steroid pills. When it kept continuing weekly or more often, I made an appointment with an allergist and later with another family practice doctor I had seen for food allergies in the past. Between these 3 doctors it took TWO YEARS to figure out the cause of my hives and gastric distress! Lots of testing and not a lot of answers during these two years. Often I would have severe abdominal cramping (which was worse than labor pains, I have experienced this 3 times) and diarrhea at the same time as the hives broke out. But finally my allergist figured out the cause when I reacted 2 hours after eating a bison burger without a bun and steamed vegetables at a nice restaurant. I had severely limited what I ate in an attempt to discover what food might be the cause of these attacks. I was suspecting it was food related because I have had other food allergies in the past to the protein in milk, eggs and soy which gave me similar gastric distress, but never hives.
After my diagnoses of Alpha Gal Syndrome I was told to avoid mammal meat, broth and gelatin. So I tried, but regularly had episodes that I couldn’t find the cause for. I learned to not buy medicine in gelcaps, not eat marshmallows, and a few other places that mammal ingredients hide. I changed most of my soaps, lotions, and makeup to vegan products. Fast forward to last year when Jennifer Burton started a support group in my area (NW Arkansas), I learned about a different allergist, Dr. Tina Merritt, and have begun seeing her. This group has provided me with more information and I was shocked at how many products have mammalian ingredients! For instance, I didn’t know that white sugar was processed with bone char. I didn’t know that my Benadryl actually was making me worse because it contains dairy ingredients; there are only two kinds we can take—Sleep Melts by Unisom is a mammal free Benadryl and Children’s Liquid is also safe. I also learned that most vitamins are mammal sourced, so now I only take the ones labeled vegan. Because of learning these things I began checking out my prescriptions. For a questionable one, I was given a distributors phone number for one of my prescription medications, by my pharmacist. He did some research and called me back saying the medication was mammal free, but the capsules are bought from a source in Israel and they could not verify if the source of gelatin was mammal or plant. He also said they changed the companies who provide their capsules often based on who was giving the better price, so it would be unsafe for me to take it. Luckily I was able to find a local pharmacy who could compound this medication for me and ensure it was mammal free.
I have been dealing with Alpha Gal Syndrome now for 8.5 years. It has affected my quality of life, made eating out very difficult, and cooking at home challenging. Many times when on trips with my family, they have spent an hour waiting while I was stuck in a public restroom. I could write a guide to the best and worst public restrooms in my area and many places I have visited. Alpha Gal has made me limit my travels due to fear of not being able to communicate my dietary needs in a foreign language. I am a Master Gardener and log many hours of volunteer gardening for my community. My “fashion statement” is gardening boots with dog tick/ flea collars around the ankles to help prevent more tick bites, along with pants tucked inside the boots. The one time I wore Capri pants that didn’t tuck in, I got a seed tick bite. That was in May of this year, and resulted in me no longer able to eat milk products. For about 30 years of my life, I had been allergic to the protein in milk and milk products. I had gone through an extensive healing process which finally cured me of this food allergy, only to turn around and again be allergic to dairy, this time to the carbohydrate in milk rather than the protein.
Why do foods and medicines not label these things better? I have been frustrated with allergy labeling for most of my life with food allergies. Even if they do have the 5 main allergies listed, they can hide things under Natural Flavoring and other cleverly devised wordings. So far, “Mammal” isn’t even on the labeling list at all. I understand companies not wanting other companies to steal their special recipes, but consumers have a right to not be made ill or killed by eating ingredients in a product. Don’t we? I am hopeful that progress with labeling things we ingest or put on our bodies will be made and that funding for research into all tick borne illnesses will perhaps find a cure. I am hearing of SO many people getting this in the past year, compared to when I was diagnosed over 6 years ago. Now when I mention Alpha Gal, often people have heard of it or know someone with it. Modern medicine can only tell us to avoid what we are allergic to, but how can we do that when we react to tiny bits of ingredients that aren’t even labeled? It is like trying to find a needle in a stack of sewing pins! That is harder that looking for a needle in a haystack, and also I am allergic to hay.
Thank you for reading this and thank you for your help!
Paula Dutton, RN, BSN
West Fork, Arkansas
Hello, I am a member of the Alpha Gal community and speak on behalf of myself and the 3000 plus members of the Alpha Gal Non-Public Support Group.
As I am sure you are aware, people who have Alpha Gal Syndrome cannot have medications or foods with mammal products or bi-products in them. As of 11/26/18, the FDA Medication Shortage List contains 110 Medications on the list. The majority on that list are not Alpha Gal safe. Which in itself is a major problem. However, today I’d like to focus on the ones on the list that are Alpha Gal safe.
- Epinephrine Injection, including the Epipen from Mylan. Epinephrine is used to treat life threatening allergic reactions. People with Alpha Gal need to carry two Epipens on them at all times.
- Diphenhydramine (Benadryl) Inhalant. An H1 receptor antagonist, and a first generation antihistamine. This medication is used in emergency room situations to get allergic reactions under control and a lot of times the ER will use this as a first line of treatment. It treats hives, stomach upsets and severe allergic reactions.
- Ranitidine (Zantac) an H2 antagonist antihistamine specifically designed to work in the digestive tract to reduce histamines.
Alpha Gal patients are treated with, and many need to be on, an H1 and H2 antihistamine daily to be able to function normally after diagnosis of Alpha Gal.
- Cromolyn Sodium Inhalant Solution. This medication is safely used by many people with Alpha Gal as a daily Mast Cell Stabilizer.
- Ketotifen Capsules. This Medication is also used by some people with Alpha Gal as a Mast Cell Stabilizer.
- Sodium Chloride Injection Bags, injection vials and solution. This is used for cleaning wounds, treatment of fluid loss, diluting other medications, dehydration, and many other uses that are beneficial to Alpha Gal patients in the Emergency Room setting.
- Multi Vitamin Infusion treatment for vitamin deficiency, which is caused by not being able to eat red meat. Many people with Alpha Gal have Deficiency issues and this is a safe and effective method of bringing our vitamin levels up safely without mammal contamination.
As a person with Alpha Gal, who has a 7 month post expiration date Epipen, I am very concerned with how risky it is for me to have an expired Epipen to rely on for a life threatening situation, should it arise. And I have used my Epipens at least 12 times since contracting Alpha Gal. So I need them due to going into anaphylaxis from unknowing mammal consumption / cross contamination. All of us in the Alpha Gal Community are currently living in fear that our Epipens will not effectively revive us from a life threatening allergic reaction. And even if we do use it and make it to a hospital, we worry that the hospital will not be adequately and sufficiently stocked with Diphenhydramine, Ranitidine or Epinephrine. All of the life-saving medications for Alpha Gal. I am worried for the entire Alpha Gal Community.
The Alpha Gal Community is unique in the fact that we have special needs that the other tick-borne conditions, illnesses and diseases do not have. We are allergic to all mammal ingredients. Which makes us more reliant on the FDA for what consuming mammal does to us and the lack of eating red meat also does to us nutritionally. We are 100% reliant on the FDA for our safety. And we are highly concerned with what the FDA is going to do about these medication shortages. It is our concern that if safe medication shortages are going to continue, then we need the FDA to provide us with safer labeling on our food products, so we will not have cross contamination from mammal sources that are mislabeled or not mentioned as ingredients in our food. So this needs to be extended further than just food. We have always needed any and all medications to reflect the same safe labeling ... No Mammalian Ingredients ... We need safe labeling for preventative care. So none of us do not accidentally have a life threatening event occur due to the lack of medications being in short or no supply. Lacking safe labeling practices that will end up putting someone in an Emergency Anaphylaxis position that could potentially kill them ... due to the lack of safe medications or the mislabeling or not being stocked within hospital, pharmacy or grocery store shelves.
Thank you for your time,
I want the post-treatment Lyme disease syndrome (PTLDS) deleted from the unofficial and OFFICIAL report going to Congress. This is an INSULT to all of us tick-borne patients; me for 49 years!
I was misdiagnosed for 35 years by 40-50 doctors. UNACCEPTABLE!
Then to add injury to insult, it took my husband's 2 BRAIN AUTOPSIES to find that his brain made WORLDWIDE HISTORY having 2 diseases NEVER found together before! 1) Lyme disease; 2) LEWY body dementia causing visual and very violent hallucinations like Robin Williams had! Plus a cluster of filarial NEMATODE parasitic worms having LYME ALSO!; and 3) Second brain autopsy found 2nd tick-borne disease of 2 species of BARTONELLA, cat scratch disease!
When the distinguished, outstanding Dr. Alan MacDonald called me on 11.22.15 to tell me of the first 3 findings above, I finally KNEW WHAT HE HAD scientifically vs. what the medical community said he did NOT HAVE! Alan also promised me, "Betty, you will be the FIRST CO-AUTHOR over us 3 medical folks to be written and published by a scientific medical journal"! Then, due to unforeseen circumstances, Alan was unable to write up his findings to submit for publishing!
I am angry for the following things:
- I have to file a LAWSUIT petition costing me around $200 to get Jack's death certificate AMENDED that above following 4 items ALL contributed to his death! Iowa's health department is going to fight me on this. They told my attorney this week involving the ATTORNEY GENERAL'S LAWYERS!
- Iowa's state death EXAMINER'S office gave different information to my lawyer than what the Iowa health department told my lawyer. The IOWA health department has NOT returned my lawyer’s call after he talked to the other office since both have to be served papers costing at least $75 each, which I personally would be happy to DELIVER FREE to them!
- Iowa’s health department told me 2 weeks. ago JACK WILL NEVER BE COUNTED IN IOWA'S CDC LYME STATISTICS even if I win the lawsuit explained above! The statistics have been filed; never to be opened again although they have known for 3 full years what Jack's 1st autopsy results were! That makes me so angry; it's hard not to use cuss words on this one!
- My lawyer told me they will want to have an EXPERT in this field testify costing at least $10,000 plus prep time. Doctors get at least $500 - $1,000 testing PLUS prep time! So this will be a COSTLY battle for me to undertake!
- I am angry because 4 yrs. ago next week, Jack was diagnosed with advanced lung/liver cancer 2 NIGHTS before he died. MALIGNACY THOUGHT TO BE METASTIC LUNG shows as the reason he died. Contributing factors showed: Parkinson's disease with dementia; chronic renal failure. When I began this 3 years ago, I had contact with Iowa's department of health director explaining what was found on Jack's 1st brain autopsy! The health director stated, "Betty, yes, these things CONTRIBUTED TO HIS DEATH and should be on the death certificate." Since then that health director RETIRED!
Can you tell I am very upset with the entire system plus this PTLDS HOGWASH being presented by the 14 people on the Tick-Borne Disease Working Group!
Why isn't the OFFICIAL report to CONGRESS on the website vs. what others have put together WITHOUT what the representatives from all the SUB-COMMITTEES have worked their butts and hearts/soul into? This is SO WRONG and needs to be CORRECTED NOW. Do you hear me to especially John Aucott and Kristen Honey?
Mother Theresa said, "God, even I have a limit!" So do I.
IOWA WIDOW/PATIENT 49 YRS!
ToTick Borne Disease Working Group,
On October 19th of this year, just over a month ago, I woke at 11:40 p.m. with severe itching, which soon progressed to hives over much of my body. The only thing out of the ordinary that day was that I had eaten a big, juicy steak which my son had brought over. I had not had a steak in a very long time. I had heard about a meat allergy due to a tick bite. As I had experienced several tick bites, including this year, I thought about the connection. As an RN, I understood the seriousness of the reactive hives and woke my husband to take me to the ER. One the way to the ER, I began experiencing chest tightness and some difficulty breathing. After receiving treatment with IV medications, I was discharged home a few hours later, and soon made an appointment with an allergist allowed by my insurance company. Blood testing confirmed that I had alpha gal syndrome (AGS) as a result of a bite this year, in my own yard, from a Lone Star tick. I learned that my allergist had studied under Dr. Scott Commings, who first identified AGS.
As a patient, and as an RN and educator, I dove into a steep learning curve in order to manage my new diagnosis. I have learned I am very reactive to the galactose-alpha 1,3- galactose carbohydrate found in mammal meats, and in a myriad of by products, including medications, and even in some IV fluids and tubing. After spending less than 10 minutes talking with one of the cafeteria managers while standing about eight to ten feet from the grill in the hospital where I work, I had an immediate reaction from the aerosols. That reaction escalated about six hours later and once again, I found myself in the ER with chills, some hives, tightness in my chest, and some difficulty swallowing and breathing. About a week after that, I had a reaction which involved chills and GI discomfort, with diarrhea. Realizing that chills are an indicator of an anaphylactic reaction for me, my husband and I spent more than an hour sitting in the parking lot of the ER to see if the antihistamines I took, in addition to the prednisone I was already on from the ER visit two days before, would work. It did, and I avoided another very expensive bill. I cannot place that trigger for certain, but I believe it was to a non-mammal food: tomatoes. I have since learned that night shade plants can be triggers for some patients with AG. I have had two additional, lesser, reactions because of taking antihistamines in time and in sufficient dosage to mitigate the response. All of this occurred in just over a three week period of time.
At this point, I have cut out all mammal meats and meat byproducts, all dairy, and all night shade vegetables (tomatoes, peppers, spinach, eggplant, etc.) to the best of my ability (meaning, if I am aware it is in a food or other product, I avoid eating or using it). I must now prepare ALL of my food (no more enjoying the social and even time management benefits of eating out or ordering food), with food I have spent hours shopping for because I must read and interpret all ingredients. That in itself is a challenge because not all companies list every ingredient in detail. “Natural flavorings” can include a meat byproduct. “Magnesium stearate” can be derived from mammal or from vegetable, but since I ca not determine from the label, I cannot eat the item. All of this have greatly limited the types of foods I have previously enjoyed, and which are enjoyed by others. The cost of “whole” foods and dairy foods substitutes is high, and is another area our budget has taken a significant hit. I have lost ten pounds in this first month post diagnosis.
Since I have had a reaction from breathing the aerosols of mammal being cooked, I have stayed away from family gatherings. This recent Thanksgiving, my husband and I stayed home instead of spending the time with children and grandchildren. Until I get a good handle on all my triggers, I ca not risk a reaction. The cost alone for each ER trip (two in one month) will wipe out our HAS in no time as my insurance requires a 40% co-pay. To say my life has been turned up-side down is an understatement.
Sadly, I have discovered that many health care professionals, from first responders to physicians, know little or nothing about this life threatening allergy. Some will say that all you have to do is not eat red meat. Others will state that if one is very careful about food intake and other exposures, the allergic response will decrease over time, and even go away. There is a pervading belief that if a patient’s numbers get below the currently established baseline for the allergy (0.1), he or she can again begin eating some mammal foods.
I strongly support evidence based medical and nursing practice. However, since there has been limited research, due to limited dollars allocated to it, I must rely on both what research exists, and the experiences of those who have AGS. Because of a Facebook support group of over three thousand members, of which I am now a fellow member, I am convinced that “numbers mean nothing”. Some people will have extremely low test result numbers and go into anaphylaxis with exposure. Others have very high numbers and will experience a mild reaction with exposure. My own “number” is 11.15 (the percentage of IgE anti-alpha gal as a percentage of total IgE), yet some with higher numbers have less intense reactions, and some with lower numbers have experienced anaphylactic shock. The types of exposures also vary and can extend beyond alpha gal containing foods and products. What we learn about alpha-gal cannot be limited to carefully designed studies, although they are necessary.
My own allergist simply ordered four epinephrine injection systems (Auvi-Q) and told me to continue to eat lower fat dairy if I did not react to it, and to come back in six months. I was not told to wear a medic alert bracelet, or given a plan on how to handle accidental exposures other than to “take a Benedryl” (which happens to contain a meat byproduct). I asked about taking a daily dose of antihistamine, like Allegra or Zytec, and was told “I could if I wanted to”. Nothing was said about the use of prednisone in the context of exposure. Since severe reactions, at least initially with AGS, tend to occur several hours after exposure, a dose or course of prednisone could be taken immediately, along with H1 and H2 inhibitors like Unisom Sleep Melts and Pepcid. There is time for the prednisone to take effect, and if necessary another H1 inhibitor could be taken if further reaction begins to develop. Some allergists or family practice physicians will discuss a detailed plan for addressing exposures and reactions. Mine did not. However, since learning this valuable piece of information from my Facebook support group, I have made another appointment with her, at additional cost of course, to discuss things like a more specific exposure plan, and how to lower histamine levels, including the possibility of having periodic blood draws to check histamine levels. An AG sufferer must have help in trying to figure out what works for them, as reactions are different for different people, and can change at any point. We don’t know why this is the case, and research is needed to learn why.
When I visited my local rescue squad to introduce myself and to discuss AG with them, I learned that even though they had recently completed training, they had not heard of this allergy, much less implications for treatment in an emergency. I provided them with some printed information, and discussed the importance of making certain that any IV fluids, tubing, and medications used on a patient with AGS were completely free of mammal by products. Many of the nurses where I work have never heard of AGS.
Since I am nurse, I think of possible scenarios. What would happen if I were in a car accident and in great pain. Would the medication administered be safe? What if I needed surgery? Would the anesthesia or sutures, etc. cause anaphylaxis? What about infection? What antibiotics are safe to take? Would a compounded antibiotic be covered by insurance? Could a visit to the dentist office cause me to end up in the ER . . . or morgue?
Perhaps by now, the readers of this and the other statements from AGS sufferers are communicating at least a bit of the daily stress we live under every day, even every meal or venture out of our homes. Lyme disease, Rocky Mountain Spotted Fever, and other tick born diseases can be treated with antibiotics, with most cases cured. This is NOT the case with AGS, at least for the foreseeable future.
In addition to the obvious need for funding, there is an urgent need for the following:
- Dissemination of correct information about AGS. This should be based on current medical knowledge AND knowledge gained from direct patient interaction, and the over three thousand AGS suffers on social media support groups. Physicians, nurses, and others must know and provide correct information and advice.
- Having pre-prepared, AGS safe kits available in the emergency room for patients with AGS. The IV solutions, medications, and tubing should be previously cleared as having no mammal by products or carrageenan, a derivative from seaweed, to which many AGS patients react, since it contains a carbohydrate which the AGS patients’ bodies identify as alpha gal. This would involve having health care workers contacting the manufacturers of the medications and equipment with NDC and lot numbers in order to ascertain the presence or absence of mammal by products. Too often, simply reading a list of “ingredients” is not enough. Patients’ lives depend on this type of safety measure. AGS safe kits should be available in all patient care areas in every hospital. Every prescription should be checked for safety, and if not, an alternative medication should be prescribed. Pharmaceutical companies should provide medications which are mammal and carrageenan free.
- Efforts should be made at health care facilities to educate their patients and/or clients to protect themselves from tick bites, and why. Doing so might also help those with undiagnosed AGS to realize they need to be tested. It can also help those with AGS symptoms, but misdiagnosed to request testing for AGS.
According to what I have been reading, and the information you likely already have, the tick population is exploding. Unless there is a cure found, the number of people with alpha gal, diagnosed and undiagnosed, will also explode. I have read as many as fifteen to twenty percent of the US population will have AGS by the year 2050, just 30 years from now, if a cure isn’t found. NOW it the time to focus resources and energy to finding the exact catalyst and/or mechanism of how humans convert to becoming allergic to galactose – alpha 1, 3-galactose, and how to reverse it or at least block the response in a way which is better than what we can do now. It is possible that instead of this simply being an allergy, it could be an auto-immune disorder, and this should be determined. There MUST be a real hope for a cure, at least to the same degree as with other tick borne diseases.
Sandra B. Hess, BSN, RN, IBCLC
To the Tick-borne Disease Working Group:
Thank you for your work to research and share causes, prevention, treatment, surveillance, diagnosis, diagnostics, duration of illness, and intervention for individuals with tick-borne diseases. Until September of this year, I was blissfully unaware of the significant health impacts and related life changes associated with tick-borne diseases. I was one of the lucky ones that had not been exposed to this in my immediate circle. Fast forward to September of 2018, and the delayed onset of a few Lone Star tick bites in June (nearly 3 months earlier) on my husband resulted in a new diagnosis of Alpha-Gal Allergy. We quickly learned that he is now allergic to beef, pork, lamb, venison (all mammal meat) along with all dairy products. His food choices have been astronomically reduced overnight. In addition, we have quickly discovered over the course of a number of delayed allergic reactions that many non-meat and non-dairy food items actually contain meat by-products and/or dairy. Food labels are not required to disclose these potential allergens unlike soy, peanuts, and gluten. Suffice it to say, that our world has been rocked in every way.
This brings me to the point of my written response to the work group. Although I find a reference to Alpha-Gal in one of the work group reports, I strongly encourage the work group to broaden their look at AG. From my very recent exposure and quest to learn all that I can about this allergy, I have discerned that the diagnosis of AG is increasing exponentially. The Roanoke, Virginia metropolitan area is an urban/suburban area of around 250,000 residents. Our allergist, who has worked with Dr. Mills-Platte at University of Virginia told us that he has 500+ patients with this diagnosis right here in Roanoke. Further 1 out of every 3 people I have shared this news with has in turn been able to name someone they know with AG. That is beyond troubling.
What I find even more concerning, as the Assistant Superintendent of a school system with approximately 14,000 students, is the potential for this same increase in students with AG allergies. From my perspective, dealing with this many allergens and the potential anaphylactic reaction to exposure as adults has been mentally, physically, and emotionally exhausting. As a school administrator and parent, I am deathly afraid of the potential risk and exposure for young children with AG in a school setting. It is abundantly clear to me that there is a significant growth in Alpha-Gal allergy diagnoses and the need for more education for the public at large along with prevention, detection, food label identification, and research into mitigating the impacts on health is essential. I implore you to broaden your work and place more concentration on the Alpha-Gal allergy. It is of significant importance to my family and to the thousands of students that I fear are at risk for this same diagnosis and a lifetime of anaphylactic concerns.
I appreciate and thank you for your diligent work with the tick-borne disease work group.
Penny Hodge, CPA, SFO
I have Alpha-Gal Allergy Syndrome from a tick bite I received around 2011. I was not diagnosed until August of 2018. I am severely allergic to mammal in all forms including gelatin, bone char, and dairy. I also react severely to cross contamination with mammal in all forms. I have a few concerns about my allergy.
The first is, does my child now have AGAS? When I was pregnant with my daughter, I did not have any symptoms of my allergy. I ate all of my allergens frequently during pregnancy without knowing I was allergic to them. Shortly after giving birth, my reactions came back. Why was I non-reactive during pregnancy? Does my daughter have AGAS now? I would love more children but I do not want to risk creating another generation that has to deal with this terrible allergy.
My second concern deals with food labeling laws. Why is it so hard for me to eat safely? It should be illegal for companies to hide ingredients under labels like “natural flavoring.” Not only is that troubling for everyone as we should all know what is in our food, it is also potentially deadly for me now. All ingredients should be labeled on all food items.
Finally, I cannot find a single medical professional in a 100 mile radius of me who knows anything about my allergy. I need a team of doctors, nurses, pharmacists, surgeons, dentists, phlebotomists, optometrists, emergency medical technicians, and more but I have no one. My doctors don’t know what medicines are safe, nor do they really care. They have never heard of my allergy so they think I am exaggerating. Pharmacists can’t check to see if my allergens are in the medicines that I am prescribed. Dentists don’t know how to treat someone with my allergy. Many medical professionals cannot be bothered to learn from their patient, whether or not that patient has extensive knowledge on the subject. The list goes on forever. The medical community needs to be educated on how to deal with this allergy, especially since it is spreading so rapidly.
Living with this allergy is beyond exhausting. With just a few small changes and a little bit more research, the lives of thousands could be made so much easier.
Thank you for your time.
I am a resident of Florida. I own a vacation property in the Ocala National Forest that was my haven away from home. That beautiful piece of property has become a place of misery to me due to a tick bite and subsequent development of a mammalian meat allergy known as Alpha-Gal syndrome. Alpha-gal is more of a disease to me than a syndrome. It has had such an impact on my health, mentally and physically.
I was last bitten by a tick in late March, 2018. After that tick bite my health was not good. I had headaches daily. I developed constant numbness and tingling in my extremities. I could not sleep. I was irritable, angry. I had constant stomach aches, cramps, diarrhea and constipation. I was falling apart at 44 years old. I have no medical history. I had no allergies to anything prior to this. I do not take medications. I eat an organic diet and work out 3 times a week. Since March, I had been unable to do many of the thing I love to do until I was diagnosed with Alpha-gal syndrome.
I have had 3 severe reactions, each worse than the last. The final severe reaction leading to my diagnosis was so severe I woke up at 3a.m. on my kitchen floor after passing out, covered in hives. I thought I was going crazy. I am a medical professional and began doing my own research. Thankfully my Google search of “beef hives abdominal pain” brought up Alpha-gal syndrome. All my symptoms fit the diagnosis. It took a month to get an appointment with an allergist but I stopped eating beef and pork. I still did not feel better. I started getting cluster migraines. I felt like I was having a stroke daily from the numbness and tingling. I started getting chest pains, fluttering in my chest and dyspnea (short of breath). I still felt like an old lady, not an active 44 year old. I still had a hard time at the gym. I could not work out like I had been. I gained 20 pounds. My joints hurt and I was more tired than ever.
After seeing my allergist, being tested for Alpha-Gal, meat and foods, it was determined that I do in fact have Alpha-gal syndrome but I am now also allergic to dairy. My allergist was not able to tell me much more than “you can never eat beef or pork again”. Great advice. How about everything else that is made with mammalian byproducts.
Since diagnosis I have learned more about this illness from those whom have had it for years than medical professionals…doctors, the CDC. Why is there no solid information out there about this disease? Why are there so few research studies being conducted? Why are doctors not educated about this disease?
Financially this disease is a burden. I now need to take daily vitamin C, vitamin D, vitamin B-12 and an antihistamine. To top it off, they all need to be vegan. Vegan supplements are costly. But, all “regular” medications and supplements contain some sort of animal byproduct. I will name a few for you….Magnesium Stearate, stearic acid, calcium stearate, zinc stearate, gelatin, glycerin, lactose, lactose monohydrate, casein, mono and diglycerides. Furthermore, most prescribed medications contain some sort of mammalian byproduct making most pharmaceuticals non alpha-gal friendly unless one would like to risk a reaction. Google the list of medications available without mammalian byproducts….the list is short. I cannot even take regular Benadryl due to the additives as it causes a reaction in me. I cannot use personal care products unless they are vegan as they all contain mammalian byproducts. All of these things have cost a few hundred extra dollars a month.
The food situation is even worse. I have chosen to eat a wholly organic plant based diet as to completely avoid any chance that I may die from what I eat. I cannot eat what my family eats. I cannot eat processed foods without getting out my phone and trying to decipher if a product contains meat or not. Did you know many brands of turkey sausage are cased in pork? And you would think it is safe to eat…better think twice. Thanksgiving is just 2 days away and I have to make 2 different mashed potatoes, 2 different stuffings, no butter, no milk, all since being bitten by a tick that gave me Alpha-gal syndrome. I cannot make regular cookies or pie for my family as they contain butter. I drove 45 minutes to find a vegan pie crust just so I can have some. How is it that food companies are allowed to not completely list what is in their products? Why do I have to call companies constantly to find out if the “natural flavoring” in their product is mammalian or not? Did you know that even Mc Donald’s French fries have beef in them? I would have thought they were safe to eat, they are potatoes right? It is for these reasons that I have completely given up on the all American diet and eat only organic plant based.
I would love to see food labelling become more transparent. Labelling always states if the product was processed in a plant with nuts, soy, wheat and dairy….why not mammalian products. Why can’t labels state that it was processed with mammalian byproducts? Alpha-gal is becoming a more prominent tick borne illness and the anaphylactic reaction is the same as that of someone with a peanut or shellfish allergy. Why can it not be seen as such?
I attempted to have my pharmacist enter this allergy into their database so it may trigger a potential reaction with anything prescribed to me. He could not as the system did not recognize the allergy. He also stated that the only medication that they carry that is made from mammalian products was a thyroid medication. I guess this particular pharmacist really does not know what is in the medications he is dispensing. Insurance companies do not cover medications from a compounding pharmacy although these are the only safe medications for those of us suffering from this disease.
Furthermore, Alpha-gal needs to be recognized as a disease or syndrome as it is much more than an allergy. I still have ongoing symptoms daily as a result of this condition despite following strict personal hygiene and dietary habits. The long term effects of this disease are unknown and more longitudinal studies need to be performed. I still have yet to determine what this disease has in store for me.
Thank You for your time.
I have Alpha-Gal, and I have Diabetes. I would like to share with you the plight of my story of managing a sugar intolerance and a sugar compound allergy found in mammalian meats and their bi-products. There are many factors to my story that caused extreme suffering, job loss, and ultimately could of caused me to die. It's not nobody's fault I was bitten by the Lonestar Tick. However, it is going to be everybody's problem if tick-borne diseases, conditions, and syndromes, are not dealt with in the medical community.
In 1991, I lived in the city. Ticks were not a concern, I functioned in an asphalt and concrete world. Very little grassy areas and those areas were well maintained. In December of 1991, I bought land in rural Gretna, Va., and relocated there in 1993. During the two year period I would raw camp on the land and yes I was introduced to ticks. At this time, not much was said about Lyme Disease. The major scare was Rocky Mountain Spotted Fever and it had been around for years. When Lyme Disease became known was ignored and dismissed as if it was a nuisance until the nuisance became "too big" to ignore. Alpha-Gal is too big to ignore. Diagnosis is a matter of life or death depending on how reactive you are to mammalian digestible sources. Anaphylactic shock occurs much later after consumption for way too many people to put it together that their diet is why. We rely on our doctors to provide care in which we pay for, but they do not listen to patients. I have been one of those patients.
Around 1999, I was diagnosed with Diabetes and Peripheral Neuropathy after a car accident. I was suffering from constantly burning feet, and a high A1c level. After going through a dietary consult set up by my doctor, I was able to control my A1c through diet for several years successfully. During this time I also was dealing with hives, off and on that I thought was a seafood allergy and an allergy to the main ingredient in Tylenol, Acetaminophen. Seemed like Acetaminophen was in many over-the-counter medications and every time I used something with it, I broke out with hives. As time went by, the hives came more frequent. I sought medical care at emergency rooms and doctors office. Not once was I ever tested. Just told to take Benadryl at Emergency Rooms and doctors offices. After a while, I became complicit and just stopped going for treatment. No one was doing nothing but dismissing an unknown major health concern that I was experiencing when I sought treatment.
Fast forward to 2013, my health problems became dire, for no known reasons. It cost me 2 jobs after multiple leave of absences, I also went through a divorce. I was in terrible pain from Sciatica. X-rays, and MRI revealed I had two pinched nerves, multilevel disc bulging and facet arthrosis, superimposed disc protusions in my lumbar spine I recovered from my job loss in December of 2013, only to lose another job 7 months later. I had to go out on another Leave of Absence due to Sciatica and Chronic Pain Syndrome.
After winning my contested unemployment award, it was required that I get a doctor to sign a form required by the Virginia Unemployment Commission stating that I was healthy and could work. After 5 doctors in a 30 day period, no doctor would sign the form, and my approved benefit was denied. I was also in a rush to find out what was causing all the problems I was experiencing because I was going to lose my health insurance. I filed for Social Security Disability Insurance. I was approved for my Social Security Disability Income in November of 2014. I would have to wait 2 years to qualify for Medicare as a permanent disabled individual. I sought healthcare through a charity care program for people who were in states that did not expand their Medicaid program.
I tested positive for SLE Lupus, and drug induced Lupus on May 30, 2014. I also tested positive for elevated transaminase level, Hypercalcemia, high red blood cells, high Ldl cholesterol, high glucose (A1c), high vitiman B-12, and a slew of other things. I had also lost an significant amount of weight. In October 2014, I had an ultrasound done in which I was told I had Non-Alcoholic Steatohepatitis Liver Disease. Like Diabetes, there is no cure for it. In 2015, I was diagnosed with Fibromyalgia. When I was diagnosed with Fibromyalgia, I asked to be tested for Tick Borne Illnesses, and refused. My PCP told me I was showing no symptoms. I requested this testing a second time a year or so later and she refused to test again. In June of 2017, I broke out twice in one week with very severe hives. I made an appointment with the PCP I saw through charity care for my semi-annual blood work and healthcare check. She wanted to start me on a new drug and I told her I would not take any medication until I knew what was causing the hives and asked to be tested again. After asking for now the third time, she became angry and finally gave me a referral to UVA Immunology and Allergy Clinic. I had asked her if she was trying to kill me. I had already told her I had been bitten by a tick prior to the first request, and she just ignored it. I was right. I learned through blood testing I had Alpha-Gal. After discovering Alpha-Gal, I was also diagnosed with Rheumatoid Arthritis, and Mixed Connective Tissue Disease.
When I lost my job, I was experiencing severe chronic pain all over my body, nerve, joint, and muscle pain. I went through this 4 years with no relief. I spent much of my time in bed. I was so stiff, I could barely move at times, and when I did move, the pain was excruciating and relentless. I still get freezing cold and tired about 45 minutes after eating. I go through terrible digestive trouble if I eat anything with red meat or its bi-products. My histamine reaction is at times unbearable. Sinus Drainage into my stomach causes vomiting.
The day I was diagnosed, I stopped at McDonalds and bought a sausage biscuit about 45 minutes from my appointment at UVA. When I got there, I became so cold and could not stay awake. They brought the blood pressure machine out to the waiting room because of my extreme coldness, and sudden inability to wake up. This was something that had been happening to me every time I ate anything. When they took my blood pressured it was 82/63. The panic was crazy within itself. They brought out another machine, same results. The third time, they did it manually with the cuff and air bulb. Same results. My daughter was with me that day, and it was a wake-up call for her. For the previous 4 years, no one was willing to believe that there was something seriously wrong that was making me so sick. During this same 4 year period, I was told I had anxiety due to extreme stress, and major depression. I was told all the pain I was experiencing I was "willing it on myself." No one wills all over body pain on their self. No one who experiences this kind of extreme pain is suffering from major depression. The pain is real. After diagnosis, the muscle pain diminished significantly. I still experience it, just nowhere as intense as it was before diagnosis.
Since Sept 7, 2017, I was able to return my sugar levels to a pre-diabetic stage within 4 months. The 4 years I went without diagnosis for Alpha-Gal, my sugar glucose stage went from a pre-diabetic stage to a stage considered to be diabetic suicide. When A1c testing is over a 7 and reaches a 10, much damage is being done in the body that is not reversible. Endocrine Disorders include organs, cells, and body tissues. It can be metabolic, or autoimmune. It's not just hormones affected , the liver, pancreas, or cell damage that makes Diabetes so deadly. It is much bigger than mental depression, arthritis, deep vein thrombosis, nerve damage, hormones, or the question of whether its obesity or hereditary. It's about balancing carbohydrates safely. Throw undiagnosed Alpha-Gal Syndrome into the equation we have a undiagnosed "source" that is causing A1c levels to be so high that it is rendering people disabled or dead. I can't digest the sugar carbohydrate compound in mammalian foods for some unknown reason.
I am not a medical professional, but it is pretty obvious that tick bite is the likely culprit to the issues I live with, and will live with the rest of my life, just because I have Diabetes. My outcome did not have to be this way. It happened because my PCP did not believe me when I told her I was bitten by a tick. Within the 4 months my blood glucose was in control. I still suffer chronic pain from nerve and joint damage, and Degenerative Disc Disease. I have to control pain through decreasing activities, and diet when pain starts to keep Fibromyalgia from flaring up. That becomes impossible if I consume red meat.
The Southeast U.S. is labeled as the "Diabetic Belt" because of the high concentrations of diabetes in this region of the United States at https://www.cdc.gov/diabetes/pdfs/data/diabetesbelt.pdf. There is a private map tracking Alpha-Gal at the website https://www.zeemaps.com/map?group=555038. The CDC is not tracking Alpha-Gal. The Southeastern U.S. region is sharing Alpha-Gal with diabetics. The CDC needs to initiate an "official" tracking map of Alpha-Gal for many reasons. Alpha-Gal is reaching epidemic levels.
The lack of knowledge among the medical community is dangerous. The American Diabetes Association (ADA) receives federal funding for research for diabetes, yet I cannot find any information or research available for testing diabetics for Alpha-Gal. I cannot find anything on guidelines set forth for diabetic diagnosis for tick borne illnesses established by the ADA. Diabetes and Alpha-Gal digestive issues are "in common." Pain is also a common factor and could be the reason I was told I had "no symptoms of tick borne illnesses" by my PCP who also told me she "could manage my diabetes." We have very little safe low complex carbohydrate foods to choose from. Mammalian food sources are in dairy, and processed foods are preserved with mammalian bi-products found on grocery store shelves. It is also in our medications we have to take to control glucose. It is impossible for the average person to determine which foods and medications that have mammalian sources in them. Many Pharmacy Technicians cannot tell you what is in the medications they dispense either. Food and Medicine labeling of mammalian ingredients is a matter of safe food choices. You have to wonder every time a class action suit is filed against the Pharmaceutical Industry whether or not it has an allergen in it and whether or not the diabetic even knows they may have an allergy to the medication. There are 5 class action suits going on as I write this against new diabetic drugs.
We live in a country where it is allowed by law that a 4 pound bag of sugar has 100% sugar as the only ingredient. What is not listed on the label is the mammalian bone char used to turn raw sugar the color white. Magnesium Stearate found on food labels can be plant or animal base. The FDA require foods that are sold in the U.S. to label allergens to peanuts, dairy, soy, and wheat sources on packaging, but there is no mammalian warning for people who cannot use mammalian bi-products because Alpha-gal is considered a "Syndrome," even though science acknowledges it is an sugar compound allergy in the saturated fats of mammalian food sources. This has to change. It's a "Condition, it's an allergy.
Another point I would like to address the Lone Star Tick appears to be synonymous to Alpha-Gal alone. Yet, they are carriers of other tick borne illnesses. We have no way of determining if we have another tick borne illness that the Lone Star Tick that bit you may carry. There is no panel to test for tick borne illnesses that test for all tick borne illnesses. Some people with Alpha-Gal are later learning they have more than one tick borne illness.
Alpha-Gal has changed who I was, to who I am today. It's not a change easily understood. People become afraid of what they do not know, and people with Alpha-Gal are afraid of what others do not know, and whether or not they believe what you are saying. There are no invitations to family functions, no invites out to eat. People who do not live with Alpha-Gal become offended because we bring our safe foods with us. They are questioned by other guest and it becomes embarrassing to them to try to explain when those people have seen you eat mammalian foods before. They think you are lying to them. People do not understand something as simple as cross contamination of cooking items or fumes can cause us to have a reaction. They do not think that sliver of butter or milk they sneak into foods will hurt us until they see it for their selves. These things changes the way people socialize with each other.
Funding for research to find cures and/or treatment for tick borne illnesses and ways to control their populations is desperately needed. There is not one person in this world that a tick is going to discriminate against, to include the most innocent among us, infants. Think about that. It can happen to anyone. People can die from it. Some already have.
I am a 40-year-old woman diagnosed with Alpha-Gal Syndrome (AGS) in July 2018. I was bitten by three ticks in May in my yard. And on the 4th of July a hamburger sent me to the emergency room by ambulance. Initially having to eliminate mammal meat and dairy products from my diet was a difficult adjustment. But I gradually found that my diagnosis impacts all aspects of my life. I would like to share my experience with you.
The biggest impact has been constant anxiety and vigilance. I am terrified of food. I am worried I will get stuck someplace with nothing safe to eat. I am fearful that I will have a severe reaction when I am alone with my children. I will not eat food prepared by a non-family member. I have inhalation reactions. I have developed sensitivities to all foods that are my staples. I worry about cross-contamination. Many foods list "natural flavors" as an ingredient, which is beyond unhelpful when I'm trying to identify danger. Sometimes I am so anxious that I am unsure if I am having an allergic reaction or a panic attack. People tell me that the allergy will gradually fade into remission. But that is not a healthy way for me to think. This is my new normal. I will work in my yard and go on hikes again, so I fully expect to be re-exposed to the Lone Star tick. I will never eat mammal meat again.
There is also the financial burden of diagnostics and treatment. Our family has good insurance, but, when copays accumulate, it is expensive. Since July 2018 I have had the following AGS related appointments and expenses: one visit to the emergency room, three exams with my primary care physician, two with my allergist, one with my gynecologist, one with my gastroenterologist, two with my nutritionist, a pelvic ultrasound, a CT scan, and many lab tests. None of the exams or testing has determined the cause for my chronic abdominal pain, which started soon after my AGS diagnosis. My daily thyroid medication contains a milk-based ingredient, but no one is really sure whether or not that will cause me problems, and the milk-free alternative medications that I found is on indefinite manufacturer backorder. Epi-pens (name brand and generic) are on indefinite manufacturer backorder. Same manufacturer: Mylan.
My anxiety manifests in my dealings with healthcare providers. I am reluctant to approve more invasive testing because there are mammalian products and ingredients in medications, anesthesia, and even adhesive pads used to attach monitoring leads. If I have a reaction to something I eat, there is at least a time delay before the symptoms. But if I am injected with an allergen, my reaction would be instantaneous. AGS is still rare and not well known by physicians, pharmacists, dentists, and anesthesiologists. I am terrified that one of my healthcare providers will make a recommendation or decision for me that will endanger my life—certainly, not deliberately, but because of a lack of knowledge about AGS. And it’s not their fault, really, because there is a lack of research, scientific studies, and literature. I need to trust that they will take my concerns and education seriously when treating me because there are documented cases of perioperative anaphylaxis and vaccine anaphylaxis in AGS patients. I tend to take a defensive stance with healthcare providers. As of right now, there is no box to check in my medical records to indicate that I have AGS. It is not a recognized syndrome yet, which becomes an obstacle to safe care.
My husband travels for work about 40% of the time, and our children are 7 and 4 years old. I am home alone with the kids much of the time. While I am scrupulously careful about what I eat and what I am exposed to, my sensitivities have become a moving target, and I cannot control all of the variables all of the time. I had to teach my 7-year-old how to administer an epi-pen. We practice calling 911 in the event I am having a severe allergic reaction. The reality is that I need her to be ready to act when (not “if”) I am experiencing anaphylaxis. My second-grader may have to save my life. I know my own anxiety around all of this, so I an only imagine how the uncertainty makes my children feel. They both have many questions, like whether they will ride in the ambulance with me and when will Dad come and will I be okay.
We still have mammal meat in the house, and my children have to wash with soap and water after eating a hotdog before they can hug me. The 4-year-old does not understand why she cannot sit on my lap during a meal. I was unable to attend the Thanksgiving Feast at her preschool because I have inhalation reactions to pork or beef being cooked or heated. I am not sure if I can safely have lunch in my 7-year-old’s school cafeteria any more.
My inhalation reactions began in October 2018. And then in November 2018, I tested positive for allergies to almonds and hazelnuts and positive for sensitivities to wheat, soy, eggs, corn, tree nuts, peanuts, legumes (beans), lettuce, carrots, apples, and bananas. I am hopeful that the sensitivities will eventually go away. At this time, I must prepare and bring my own food to the homes of family and friends. I am not able to eat in restaurants, as they cannot guarantee no cross-contamination in the kitchen, and they are likely to be cooking beef or pork nearby. Eating is a social activity, and this is a very isolating condition.
I have worked as a veterinary receptionist for the past nine years. Alpha-gal occurs naturally in the cell walls of all non-primate mammals. My patients are dogs and cats, which are mammals, and alpha-gal is present in their body fluids, waste, and dander. Before my Alpha-Gal Syndrome diagnosis I did not have an allergy to dogs or cats. I am extremely cautious at work because I am exposed to pet dander, waste, and bodily fluids, pet foods containing meat, cleaning chemicals, and discarded human food containers in the trash. I wear gloves when cleaning or handling garbage and wash with soap frequently. I cannot use the employee kitchen because of fumes and residue from other people’s food. As a receptionist I am occasionally required to handle patients, but I am more reluctant to do so since my diagnosis. Were I to be bitten or scratched by a patient, I could not safely get my tetanus vaccine boosted or undergo the rabies post-exposure prophylaxis regimen (if the animal’s vaccine status was in question), as both the tetanus vaccine and rabies vaccine contain mammalian ingredients. I am increasingly fearful that occupational hazards will force me out of veterinary medicine. That will be a very sad day because I love what I do.
I hope that foods containing mammal-sourced ingredients will be labeled as such. I hope my children aren't put into the position of needing to save my life. I hope pharmaceutical companies stop using variable sourcing for their ingredients. I hope that more healthcare providers and pharmacists will become knowledgeable about AGS. And I hope I don't become a sentinel event that shapes hospital policy.
Thank you for your time,
In August 2018, my husband, step-son and I spent a wonderful 5 days camping in Arkansas. We enjoyed the beauty around us and spent much of our time camping and exploring. On our next to the last day there, we all discovered some chigger bites in the typical places — anywhere there was elastic. I found a very, very tiny tick crawling on my ankle that evening, but killed it and didn’t think much about it. (We have a nice camper and were not tent-camping.)
By the next day, my reaction to the “chigger bites” was so terrible that we had to seek some sort of medication to stop the itching. Nothing really helped much. This continued for at least a month, possibly 6 weeks, afterwards and we commented about how so many of my bites were not in typical chigger locations, but instead were up and down my calf and even all over my back. Neither my husband nor step-son had much trouble and only had a very few bites. I have always been allergic to mosquitoes, so I attributed my reaction to that. I still have marks on my legs from some of the bites.
In October, we went to Arkansas again on a camping trip. We left after work on a Friday and stopped in the rain to grab a quick meal about 6:30 p.m. While I generally avoid fast food/french fries, there were limited choices at our exit, we stopped at Wendy’s, thinking that at least we knew their burgers were made with real beef. I had a burger and french fries, with a Diet Coke - all things I have eaten without a problem in the past.
About 2.5 hours later (9:00 p.m.) after we were settled in our camper, I began feeling sick to my stomach. I commented about how I should have avoided fast food. I began to feel terrible, with horrible nausea and my stomach actually hurt. It got progressively worse and I went to lay down, wondering if I had contracted food poisoning, although my husband was fine. By 9:30-9:45, I began breaking out in hives and quickly they began to cover my entire body.
My husband had some Benadryl and I took 2 pills. I knew at that point that I must be having an allergic reaction to something I ate, but couldn’t figure out what. I tried to lay down to let the Benadryl begin working, but began having difficulty breathing and even started to have trouble finishing my sentences, so we headed into Arkadelphia, AR, the nearest town, to the ER.
Upon arriving there, the nausea had subsided, but the rash was still very prominent and I began to wonder if I was having a heart attack. I was shaking all over and couldn’t catch my breath. They confirmed that I was having an allergic reaction and gave me a steroid shot.
After monitoring my vital signs for a couple of hours, and seeing that my breathing had returned to normal, they released me with a prescription for Prednisone and instructions to take Benadryl until the rash was completely gone.
By Monday, the rash was mostly gone. I took the Prednisone (in decreasing dosage) for 5 days and also was able to make an appointment with an allergist. Upon describing what happened to me, Dr. Kaufman immediately told me that he felt strongly that I had Alpha-gal and he wanted to do the blood test to confirm it. He wanted me to wait a few weeks to have the test so that he could be sure there was no meat/beef in my system and prescribed epi-pens to keep in my purse.
I had the blood work this week and will get the results by on November 28, but after doing my own research, I feel sure that he is right. I have completely avoided ingesting any sort of mammalian meat since then, but am finding that I seem to be also reacting to dairy products, so I have cut those out of my diet as well. Most recently, I began having reactions to the “natural” facial cleanser that I have been using for at least 5 years, to the moisturizer and now it seems to lipstick, as well.
While it is frustrating to have to make so many changes at once, the worst part about this is how scary it is! I have never had any sort of major allergic reaction to much of anything and not knowing when it could happen again is very alarming. I do not consider myself an alarmist at all, and I have tried to take all that I read with a “grain of salt”, but my reactions are real, uncomfortable and very scary. I am afraid to go out to eat since I worry about cross-contamination and even planning for Thanksgiving dinner has become a challenge. I worry about future encounters with the outdoors and I worry for my grandchildren, who need to connect and play in nature.
I appreciate your efforts to make others aware of this growing problem and hope that you are able to gain funding to do more research so that we can put a stop to this before even more people are affected.
To the Members of the Tick-Borne Disease Working Group:
In her groundbreaking 1999 essay “Leverage Points: Places to Intervene in a System”(1), Donella Meadows proposes a different level of thinking about complex global problems for which our “usual” thinking hasn’t worked. Many initiatives target one particular problem or aspect of a problem. However, big problems demand big solutions. Tick-borne diseases and conditions are a BIG PROBLEM.
I would like to extend my congratulations to everyone involved over the past 18+ months in the gargantuan effort that culminated in the 2018 Report to Congress. These comments use that report as a springboard for continued work.
Between now and submission of the 2020 Report to Congress, I strongly encourage the Tick-borne Disease Working Group (TBDWG) to continue to expand the groundwork laid in the TBDWG’s 2018 Report to Congress. In the vein of Meadows’ leverage points I ask the Group to consider the following points
- Inter-relatedness north to south; across communities and economic levels: Please remember that the range of the aggressive Lone star tick (Amblyomma americanum) continues to spread and that increased attention must be directed to the overlap with the black-legged tick (Ixodes scapularis). The behaviors of each are completely different. The controls used on one species will not necessarily work so well on the other, and recommendations should be made accordingly. Please also remember that ticks do not discriminate – people across numerous communities and occupations are affected.
- Top-down and bottom up agency and individual engagement: Please continue to pursue the involvement of multiple federal agencies not mentioned in the 2018 report. Agencies can influence and participate in management of ticks. For example, the current report does not mention potential engagement with USDA, EPA, DOI – all agencies that have participated in previous efforts such as IPM (integrated pest management). I also feel that grassroots involvement should be solicited via focus groups around the country to gain a broader perspective of the impacts of all tick-borne diseases and conditions, especially in the southeastern US which now has six species of ticks that bite humans.
- To stretch increasingly scarce taxpayer dollars, whenever possible please pursue and recommend cross-sectoral collaboration such as public-private partnerships. For example, the state of North Carolina’s Department of Health and Human Services’, Division of Public Health, Communicable Disease Branch, now partners with veterinarians across the state to collect ticks for identification. It is through this initiative that DHHS staff identified the presence of the invasive Asian longhorned tick (Haemaphysalis longicornus) in two NC counties – including one found biting a human.(2)
The recommendations here can help influence the development of different levers towards effecting large scale change in the problem of tick-borne diseases and conditions. Thank you for the ongoing opportunity to submit written and verbal public comments – a critical and vital part of the TBDWG’s role in reducing the impacts of tick-borne diseases and conditions upon the populace.
Jennifer Platt, DrPH
Co-founder, Tick-borne Conditions United
Pittsboro, North Carolina
My family and I have been affected by Alpha Gal Syndrome for many years. I was diagnosed two and a half years ago. My life has improved by avoiding mammal, but I keep reacting to smaller and smaller exposures. I go to work but really no place else. No going out to eat, no going to evening meet ups for work (they have pizza), no time at family’s homes (pets, recent bacon). My husband is very supportive but it is a huge strain on him.
How do you live with a “syndrome” that you can’t explain? How do you keep your job when you are disabled by a nearby microwave
Please help us. This is for real. Thank you.
This is a post that I placed on Facebook some time ago to make others aware of Alpha-Gal.
On September 30th, 2015, I had a great steak supper, early in the evening, with trimmings and red wine. Less than three hours later, sitting, reading, I suddenly had a deep, intense itch in the palms of my hands, strange "stars" in my vision and a crawly sensation inside my head. I was dizzy, but stood to go into the kitchen for ice and water. A blackness descended. Next thing I knew, my husband, James was standing over me, calling my name. I realized I was on the floor looking up. He helped me rise and led me to the bed. I was immediately awash in sweat, my clothing soon soaked; on the heels of that, extreme shaking chills. My heart was racing, beating out of my chest. My throat and face felt huge. Neither James nor I said the words, but the fear of stroke or heart attack was there. I was coherent, but things were fuzzy. I was weak.
As many of you know, we live in the boonies, (rural South Georgia) about half an hour from town. Rather than call 911, we decided a trip to hospital was warranted, but in the car. I shook so hard on the way, I feared my teeth would break with the chattering, so I mostly held my jaws clenched. James called our son, Heath and he was waiting at the hospital.
Long story short... a night of irregular heart activity, extreme fluctuation in blood pressure (at one point, 70/30) whacky oxygen levels, EKG, echo cardiogram, blood drawn multiple times, urinalysis, blood sugar tested, IV for fluids, two cat scans, chest X-ray, shot in stomach for stroke, MRI., all night and next day on heart monitor. No definitive results. No one at the hospital expressed any knowledge of, or interest in, the possibility that my symptoms were related to the multiple bites I had suffered, even though I had red, inflamed, blister/pustules all over my body.
I was released pending seeing my family doctor next day. I was also now black and blue down one side of my body, from hitting a glass table on the way to the floor. My doctor postulated that I may have a pinched vagus nerve, which can result in heart being wonky, fainting, etc.
Meanwhile, my husband James and I had speculated about an attack we both had experienced of what we thought were redbugs/chiggers about ten days before. I had multiple bites all over my body (which I had told hospital personnel about). We had heard on the news recently about tick borne ailments like Lyme disease. I asked the doctor to order up tests for such a possibility. He was skeptical, but kind, and did so.
End results... I tested positive for a tick borne condition called "Alpha-Gal," short for Galactose-Alpha- 1,3. This causes an allergic reaction to mammalian meat. Effects can range from itching or hives to severe gastro-intestinal issues, to full blown anaphylaxis, unconsciousness, even death if not arrested.
Research is limited, but increasing. The University of Virginia in the US is in the forefront of study. Many hospitals and doctors (as I found) are unfamiliar with the occurrence. Virginia, Kentucky and surrounding areas have the largest US occurrence, but cases are turning up in the UK and Australia.
My husband has not been tested, but having the same bites and some extreme stomach pain and digestive issues during the same period, we believe most likely he is affected.
I am sharing this to help spread awareness, and Facebook seems a good forum. Whether we were bitten by redbugs or larval ticks is unclear. Please guard your families, your children, especially in the woods and undergrowth. Use a good insect spray. Check for ticks over your body, in hair. Be alert for incidences such as I described in my experience. My family now soak outdoor clothing regularly in Permethrin.
Antihistamines can help with mild episodes. I now carry two Epi pens for emergency. Watch closely for swelling of the throat or difficulty breathing. Many antihistamines contain mammal ingredients.
Mammal products are in much of our food and medicines. I am learning to read labels with a new eye. James and I have cut meat from our diets, except for chicken and seafood. Cross contamination in restaurants can be a worry. For example, many restaurants grill or fry seafood or chicken on the same griddle or oil as they do pork chops.
I have since had to give up all dairy products. I had one other hospital visit a couple of years ago in Gainesville, Florida after consuming dairy products. By the way, this was at an off-campus, teaching hospital of the University of Florida. No one in the emergency room had any knowledge of Alpha-Gal, and I was pretty much treated as suffering anxiety, and dismissed.
I can provide resources for anyone with further interest. Googling Alpha-gal brings up a few results.
Thanks for reading. Careful in the woods!
Alpha Gal allergy from the Lone Star Tick
Those of us afflicted with this allergy need awareness spread, and need help with food and medicine labeling and warnings. As you read this, please think about how you would feel if this were you or your child. Please take a few minutes to read this! Thank you! This allergy is spreading rapidly.
I was diagnosed with the alpha gal allergy after an almost anaphylactic reaction to a hamburger I ate on July 4th, 2017. In the typical 3 hours (can be up to 6 or 8) after I ate the hamburger, I was covered in whole body huge hives and my throat became hot and tight, so it meant a trip to the emergency room, fast treatment, and thankfully, I was OK. I thought I could deal without having beef or pork, but then I learned how very life-changing this allergy is. Before July 4th, I had no idea I had the allergy. I had had a tick bite a few weeks before, but didn't know about the Lone Star tick.
Even finding out you have this allergy can be a near death experience. Many people, including me, go into anaphylaxis, or near-anaphylaxis. Some people have died. This tick-borne disease is spreading rapidly. Two of my friends have been diagnosed in the past month.
This allergy is truly life-changing because mammalian products are in so many processed foods, medicines, and even things used in hospitals. I am also allergic to dairy, because it is from a mammal, of course. My life now means reading every label on food, medicine, shampoo, lotions, soaps, you name it. Your entire everyday life is changed for the length of time you have this allergy, which can be a lifetime. Living with this is depressing and changes everything about your life, and you may or may not recover from this allergy. It isn't safe to 'experiment' and see if something bothers you, because you could end up with a life-threatening reaction.
The alpha-gal allergy ruins your social life. You cannot take chances on eating at someone's house because you can't know all the ingredients they used. It is very difficult to eat in restaurants, and any organization's luncheons or dinners are so dangerous. Lately, I have even reacted to fumes from bacon being cooked at my daughter's house! Some alpha-gal people cannot even go into a restaurant because of the fumes from meat.
Traveling becomes a very real challenge if you have this allergy. What happens if you have an attack on a plane trip? You need to go to the emergency room if you have to use your Epipen. Finding a restaurant that will accommodate your needs is a challenge, and then you have to put your life in the hands of the kitchen personnel, trusting them to realize how serious this is.
Eating in restaurants is like playing Russian Roulette, so I have only been out twice in over a year. You have to talk to the chef/manager and be sure your food is safe, and that is has been cooked separately, with separate and clean pans and utensils. This is damaging to your social life. I have become the 'If I didn't make it, or don't know every ingredient, I can't eat it' girl. Food isn't fun any more. Doing without dairy is actually the hardest part, and substitutes are just not the same. I couldn't even eat fried chicken at a funeral reception recently because I could not find out what kind of fat the chicken was fried in. I have to check everything!!
Another serious problem for alpha-gal sufferers is what would happen if you need to go into rehab after surgery, or go to assisted living or a nursing home. Those places cannot easily prepare meals for just one person, and even if they did, cross-contamination is a huge problem, from cooking pans or utensils. Being in such places could be life-threatening. My sister is now in assisted living, and this made me realize I probably could not live in a place like this, even if it became necessary.
Food products in stores need to be labeled clearly so we can see if they are safe. 'Natural flavoring' can often have mammal products, and there are other hidden additives which can be dangerous. Even sugar is sometimes processed through bone char. You can see how difficult this all becomes.
Medicines are often made with gelatin capsules, so finding vegetarian capsules for the things you need can be a problem. And some medicines and supplements are derived from mammal products. Those of us with this allergy need to be able to tell what is safe for us. Again, I have to study every label on everything, and I am becoming a chemist! I just had a bad reaction this evening to orange-flavored aspirin, maybe because of the Red #40 food coloring!
Most vaccines have mammalian products in them. Again, this makes life difficult, and dangerous! We need clear identification there, too.
I had a CT scan with contrast recently, and had to ask the ingredients in the contrast before I would consent to the procedure. You have to check everything you are given or treated with in a hospital. If you are not able to communicate, you need a family member there who knows about your allergy and who will advocate for you.
It is not an easy life now. This allergy literally changes your entire life and harms your social life. Many of us are depressed since acquiring this allergy. Our quality of life is seriously affected, and many of us don't enjoy food anymore. You are always wondering if your next meal might kill you! It's hard for people who don't know about alpha gal to know how life changing and frightening this really is.
Many medical personnel know nothing about alpha gal. If you have to go to the emergency room, have surgery, or even be in the hospital, you have to be the one to educate the medical professionals! This is truly life-threatening because you may be given something that will cause anaphylactic shock. Many alpha gal sufferers even have to educate their allergists! This is all unacceptable. Medical professionals need to be educated about the alpha-gal allergy.
Just try living knowing that at any moment you might eat or be exposed to something that may give you anaphylactic shock and/or kill you.
The number of alpha-gal patients is growing rapidly and this could soon be a serious health issue. The meat and dairy industries could be affected if this continues.
Labeling of all food, medicines, medical supplies, and personal care products is essential, and the procedures for making all medicines and vaccines should be stated. Mammal ingredients need to be identified.
Please do whatever is within your power to make life easier for those of us with this life-threatening allergy.
My “journey” through dealing with chronic Lyme in Oregon has been horrible.
I was diagnosed with Lyme disease in November of 1992 while living in Weaverville, California. At that time I was working full time at Trinity Hospital as an RN, raising two young children (one of which was diagnosed with neurological Lyme disease) and doing the book work for my husband's business. I did not have a known tick bite. I had experienced a series of unrelated illnesses since I had meningitis in 1986. It is my belief that that was from Lyme and that I passed it on to my child.
I was treated aggressively through the years with oral antibiotics, two sessions of IV antibiotics (9 weeks and 9 months) and hyperbaric therapy. I would recover, return to work and an active busy life, only to relapse every few years. I was followed by five different physicians through the years in California and Hawaii and never was denied treatment and only had one physician, a Neurologist, doubt the existence of Neurological Lyme Disease. My MRI scans at UCSF actually pinpointed the lesions in my brain as Lyme and stated “No evidence of Multiple Sclerosis”. That was in 2001 and my MRI scans still show no signs of MS.
In 2011 I saw a FNP in Oregon that ordered long term oral antibiotics when I discussed my returning Lyme disease symptoms. My ability to walk and speak, along with increasing fatigue, migratory joint pain was so profound that I was told by that office to follow up with an MD as I was beyond their level of care. I went to the physician in Weaverville that originally diagnosed both my child and me with Lyme Disease and I knew I would have his support. He hedged and told me at my visit we would have to have many conversations before pursuing treatment. He only ordered the Igenex testing when I pressured him for treatment. When we got the attached results, he still stated “It won't hold up in court” and suggested I get treated out of state. He was still, four months later, ordering confirmation tests and has not treated the Lyme. His solution to my not being able to walk is a motorized wheelchair and home health.
In frustration, I messaged him that if he would not treat the Lyme, to send me to someone that would. After a lengthy wait I was seen by an Infectious Disease MD. She scoffed at any labs not done by Mayo Clinic and told me that Lyme disease is very easily cured by a few weeks of antibiotics so if I had ever had it, it was gone. She stated that my getting better after antibiotics had been a placebo effect. She stated that I was ill, and should be seen at a teaching hospital but offered no ideas as to what was wrong.
I was finally seen by a Naturopath in Medford. He changed therapies frequently and kept adding supplements until I was taking 218 doses a day. I was spending $5000/month! After over three years under his care, my Babesia and Lymes tests remained positive. He wanted to repeat a failed therapy (Alinia and Malarone with NO antibiotics) and told me that Dapsone was contra-indicated with Malarone. I know this is not true. So, I was seen at Pacific Fronteir Medicine in Foster City, CA. They were knowledgeable and immediately put me on Dr. Horowitz' Dapsone protocol and Minocin. If I am not better in eight weeks, we will consider IV antibiotics. So, I may have found access to care – but not many retired on disability households can spend $5000 a month for several months and then go out of state for medical care!
I lead the Rogue Valley Lyme Disease Support Group (part of Oregon Lyme Disease Network). Most people coming to our meetings have received a month of doxycycline and are declared cured....but they remain ill. They do not have the money or energy to see a Naturopathic physician or leave our state for medical care. It is heart breaking to watch them get sicker.
Please assist us with access to care for Lyme Disease in Oregon.
To the members of the Tick-Borne Disease Working Group regarding by new life.
I was bit by a Lone Star tick in 2015. I have been living with Alpha Gal Syndrome ever since. Thank you for giving me the opportunity to share my story.
By the time you adjourn your meeting you will have heard many accounts about the effects of Alpha Gal and other tick-borne conditions, all varied in scope. Hopefully, the chorus you hear will lead to much needed changes across many industries and to new health practices and guidelines.
My story is like many. A period of not knowing why I was waking with the most unholy vomiting that went on for hours. The fear that I may suffocate and the incredible weakness and disorientation was a nightmare. This happened over and over again before I learned about AG. I've blacked out driving on a highway with my kids. I've found myself with frightening chest constriction and a blood pressure drop at a campsite, at midnight, fading quickly. Again with my kids.
I hate food now. I hate shopping for it. I hate cooking it. I CANT eat but a few things that I like and I DO eat many things I probably shouldn't.
I have yet to find a suitable primary care physician, my thyroid is totally out of whack, my headaches are returning more frequently and if don't lay down for at least 20 minutes twice a day I can barely hold myself up. And that's on a good day. When I do lay down I realize every nerve in my body is humming like Jimi Hendrix guitar strings after a long show. For several minutes I feel my heartbeat drum through me then realize I'm barely breathing; that for hours, I've been barely breathing. Is it all AG related? Probably not. But as screwy as this “allergy” is nothing makes sense to me anymore.
I have had my gall bladder removed, been to the ER with pains that can't be explained, and been told I have a hernia pressing into my lungs from excessive and violent vomiting, Aches and pains that come and go, one day the ankle, the next day the shoulder and so on. None of this is as bad as the psychological impact AG has had on me.
After finally knowing what the problem was, I spent a while being thankful not to be throwing up any more. Then I pretended I was well adjusted, always biting my tongue and smiling through the embarrassment every time I'd have to explain it. And there is the disappointment of not being able to enjoy family gatherings the way I once did. Not just disappointment - internalized misery.
My own husband, he "feels bad" that my already limited "picky eater diet" has been severely cut back and that one little slip up could make me really ill. I've spoken to one woman whose husband left her and their young kids because he thought she was lazy and that her symptoms were psychosomatic. Another who was being divorced after decades of marriage. Do I have that to look forward to?
So, now there is depression. There is the shame of not being able to accomplish half of what I used to. The fear of eating anywhere away from home. The lack of hope as I see my quality of life go down.
Helping others newly diagnosed, learning from those who have had AG longer then I, and supporting the ones already pushing for change, is the only thing keeps me from saying “to hell with this” and eating roast beef from Subway, just to see.
I'm tired of feeling inadequate, exhausted, unmotivated, indecisive, unfocused, isolated, unworthy, un-cared for and incompetent. I'm ready to be angry. I'm ready to demand better product labeling, safety protocols and research for a cure. I'm ready to get off this hell-train and go back to who I was.
No age, no sex, no race, or religion is immune to the life-altering and often devastating effects of infection from ticks. One day some of us will be in assisted living facilities. Will they know what AG is and what not to feed us?
Kids in day cares, foster homes, summer camps, universities, they all need to be cared for properly. As do soldiers, missionaries, hunters, hikers and so on.
As Alpha Gal spreads seemingly at an exponential rate it's only a matter of time before your neighbor has it, or your mail man, or your spouse. Once it's in your home, and you see the effects of AG, these discussions of change will take on a whole new significance.
Please help us make changes now that could save others, possibly yourselves, from the hurdles that we face today.
Thank you for listening to.my story.
Chesterfield County, VA