This webpage displays the written comments received by the Tick-Borne Disease Working Group for the February 2022 meeting. The opinions expressed in each comment displayed on this webpage belong solely to the author of the comment and do not necessarily reflect the opinions of the Department of Health and Human Services (HHS) or the Tick-Borne Disease Working Group. Any information provided in the comments displayed on this page has not been verified by HHS.
Adina Bercowicz on behalf of LymeTV
We would like the Tick-Borne Disease Working Group to recommend education programs to help lower the incidence of tick-borne disease. Awareness of tick-borne disease risks and knowledge of preventive measures are severely lacking in the general population. Educational efforts for children could instill awareness and prevention practices as an essential life skill. This would lower the incidence of tick-borne diseases in the long run and avoid a large public health burden. Adult education efforts are also important as many patients state that they were ignorant of tick-disease risk before they were personally infected. In the absence of other preventive interventions (such as an effective vaccine) education is the only route for improving public health by increasing the use of the currently available preventive measures (avoidance of tick habitats, use of tick repellents, permethrin treated clothing, tick checks, etc...).
Brandon and Beth Burns
Danville, West Virginia
This is our story.
My husband spent the last part of May and the first half of June, 2020 in [REDACTED], which is 5 hours away from our home, battling Ehrlichiosis. To make a long story short, he was transferred from the ER to the ICUs of two different hospitals before being airlifted to the ICU of [REDACTED]. He developed HLH, a rare and serious blood disorder as a result of the Ehrlichiosis. He received three chemotherapy treatments before his medical team determined the HLH was a result of Ehrlichiosis. Chemo was immediately discontinued when ibloidwork confirmed and he was started on a 20 day course of IV doxycycline. We truly almost lost him as he was going into organ failure. We have four daughters and we are thanking God daily that the Ehrlichiosis was discovered in time.
York County, Maine
Tick-borne Conditions United
Dear TBDWG Committee Members -
I'd like to thank you and applaud your ongoing efforts. I'm grateful for you all.
I have some concerns I’d like to bring your attention to regarding Alpha-gal Syndrome and the new ICD-10-DM code, GalSafe Pigs, food labeling, and the recent CDC website updates. Please feel free to reach out with questions.
I was pleased to learn Z91.014 – Allergy to Mammalian Meats was added in October of 2021 to the list of ICD codes. Considering the tabulation below for Z91.014 I’d like to ask for a review of the coding to ensure we’re laying the groundwork for data-rich results, and clear understanding for the end users of this code and use for research over time.
ICD LIST - https://icdlist.com/icd-10/Z91.014
“The following references for the code Z91.014 are found in the index:
- beef - Z91.014
- lamb - Z91.014
- mammalian meats - Z91.014
- pork - Z91.014
- red meats - Z91.014”
- Will a healthcare provider know which code to use for best data capture? Will they know this is for Alpha-gal only – the carbohydrate allergy, and not the protein allergy?
- What is the intended difference between “Allergy to mammalian meats” and “red meat” here in the tabulation above? Will a provider easily know? (We know some physicians still think pork is white meat thanks to the old marketing campaign. Clear understanding that pork is white meat ONLY by culinary terms, and not scientific is important.)
- When searching “Alpha-gal” on the site it doesn’t produce results which is the case on most sites I’m finding. Please be mindful of this as a synonym to use for search functions. (Synonyms: Red Meat, Mammal, Mammalian, Alpha-gal, Alpha-gal Syndrome, AGS, AG, Mammalian Meat Allergy (MMA), Beef, Pork, Lamb, (venison, rabbit, milk, gelatin?)etc.)
- If a patient is positive on the Alpha-gal Panel to both the carbohydrate, Galactose-alpha-1,3-galactose (Alpha-Gal) IgE, and the three animal proteins, beef, pork and lamb, should the provider use an additional code to properly capture the positives to the carb and the protein? Or will they think this is all that’s needed – just use Z91.014 and call it “done”. Thinking ahead for research.
- How do we ensure we are capturing the correct information about both the carb and the protein allergies as a separate condition?
Patients and healthcare providers are rapidly becoming aware of Alpha-gal Syndrome in their geographical area. They, like most, seek support anywhere available. Seeking information online through websites and social media channels should not be surprising. As patients seek support and information, they will undoubtedly learn of the GalSafe pig and the valuable work being done that will enable AGS patients with an option for AG-free pork. As this historic shift happens, it will be important for patients and providers to be educated and provide adequate diagnostics and support, so they know if they are allergic to both, or only the carbohydrate or the protein.
If the patient is unaware s/he has an allergy to the protein which has been showing up as a trend I’m hearing more and more, it will be important to test and inform patients with a clear understanding of what they can, and cannot consume. It's challenging enough just trying to clarify what a mammal is, even to many well-educated physicians and researchers and adding GalSafe pigs to the conversation warrants some extra thought on the coding, and education and awareness campaigns we’re implementing.
I recently was discussing my experience trying the GalSafe Pigs with another Alpha-gal support group member. She had requested a sample but never gave much thought to her test which is positive for the protein too. What if I hadn’t said anything? What if a patient learns they have AGS, and has no awareness they also have a protein allergy and finds GalSafe mammalian products available? Are we putting these patients at risk? Should we be using the Alpha-gal Panel exclusively and providing education to patients and providers? (Reminder: Dr. Scott Commins has provided input on testing previously.) What do we know about AG patients’ reactivity to the protein in standard, off the grocery shelf pork vs. the GalSafe pigs? (I know it's too new but please consider any beneficial actions needed.) All warrants further support for research, and well-rounded education for providers, including the restaurant/food services industry that may encounter this in the future as it becomes more readily available to the public marketplace.
Now I’d like to shift your attention to the continued need for food labeling. Consider meats, and by-products in alcohol, medical and pharmaceutical products and devices, non-alcoholic beverages, and other products and textiles. There are several governing agencies that are involved and have been mentioned before. Please ensure you are bringing the necessary entities together to implement these lifesaving changes.
The FASTER Act was recently passed and should provide an easier pathway for AG-free labeling. The incredible folks at the Food Allergy Resource and Education (FARE) were the driving force behind the FASTER Act which recently passed and gave way for Sesame labeling.
The great folks at FARE also have reliable resources to support the millions of Americans living with food allergies. Please consider partnering with this amazing organization which includes Dr. Thomas Casale is the Chairman of the FARE Clinical Network. With the right funding and support, their organization is well positioned to provide an impact of monumental importance and already has many of the needed programs in place, including legislative advocacy, food services training for “other professionals” such as Food Banks and Soup Kitchens, Restaurants, Food Manufacturers, Registered Dietitians, Camps – all of which is desperately needed to better support those of us living with Alpha-gal Syndrome. Our non-profit, TBC United also aided with a webinar for those seeking basic information. See, https://www.foodallergy.org
Bringing this letter to full circle, I want to say thank you again with special mention to the work done on the CDC website. The changes are really helpful! THANK YOU!
I’m so pleased with the updates but am really looking forward to seeing Alpha-gal on the top allergen list where one of the links leads to. If any information can be shared with regards to the advancements of the recommendations for labeling in the 1st and 2nd Reports to Congress, I (we) would be grateful.
I thought it was a great idea to include the links regardless of the fact Alpha-gal isn’t listed currently. As shown from the site,” Under the Food Allergen Labeling Requirements of the Food, Drug, and Cosmetic Act, food labels must clearly identify the food source names of any ingredients that are one of the major food allergen or contain protein derived from a major food allergen in the ingredient list or a separate “Contains” statement.” Being able to identify some of the “milk” labeled products is helpful but it pales in comparison to the need for Alpha-gal to be labeled for our population living with this condition.
I sincerely appreciate all the effort being put in to identify the gaps and overlaps.
I am Betty Gordon from Ames, Iowa. I am here today to tell you about the NATIONAL DISEASE RESEARCH INTERCHANGE, NDRI program. Dr. Ken Liegner was kind enough to tell me about this program last year. They work with the Lyme Disease Biobank California sponsored by the Bay Area Foundation.
My late husband, Jack Gordon, 77, died Nov. 13, 2014 diagnosed 2 nights before he died with advanced cancer of lung & liver! NO cancer diagnosis before this. However, his symptoms and odd behavior I observed I wanted a brain autopsy to be done. I donated Jack's body to [REDACTED] osteopathic college for medical students to study. They informed me they don’t do brain autopsies.
However, they failed to tell me for 1 year they remove the brains, preserve them correctly, and use for study purposes.
I was able to get Jack's brain autopsied 1st time by Dr. [REDACTED] who called me Nov. 22, 2015 with these findings: neuroborreliosis aka chronic lyme disease, Lewy body dementia causing his visual/violent hallucinations like Robin Williams had. [REDACTED] said Jack's brain was 1st in world with these 2 diseases never found together before! plus a cluster of 24 filarial nematode parasitic worms having LYME inside of them![REDACTED] promised me to write this up and submit for publishing in a medical journal with
"Betty, you will be the 1st co-author over 3 of us involved".
[REDACTED] then failed to follow through on his written and verbal promise to me. So I had a 2nd brain autopsy done by Dr. [REDACTED] She found following: lyme disease & 2nd tick-borne disease: bartonella aka cat scratch disease, 2 species.
[REDACTED] failed to publish as well. Disappointment again for 2nd time. She recommended I get my blood tests for bartonella also by [REDACTED]. I did; I'm positive for both of what[REDACTED] found above!
So I was able to get Jack's brain tissue approved for NDRI/lyme disease bio-bank research!
I was told in writing Jan. 16, 2022 that Jack's brain was now being research by [REDACTED] TB center in New York City.
I'm anxious to what they find and PUBLISH; 3rd time is a charm!!
I'd like to thank Karen Forschner, founder of Lyme Disease Foundation,
for her painstaking hours spent finding Willy Burgdorfer’s handwritten speech that he found nematodes (worms) and Borrelia in the same ticks collected from Shelter Island.
This is scientifically proof of how the nematodes and Borrelia were in Jack’s brain.
I have submitted my paperwork recently to be approved for the [REDACTED]
What they chose NOT to use, I plan on donating to IOWA DONOR NETWORK for "human" live donations.
My 40 yr. old nephew, [REDACTED] died 1.16.2019 from his traumatic brain injury of 6 years. His parents donated to Iowa donor network: his bone, tissue, and skin!
Last summer, his mom got letter saying his body donations helped 55 people!!
17 in USA, 1 each in Spain, Puerto Rico, and Canada.
55 people were helped by his parents decision to donate to HUMAN LIVES in the world!
The CDC failed both Jack and me! I was misdiagnosed for 35 yrs. by 40-50+ drs.Jack was NEVER diagnosed in 35 yrs. either.
CDC and medical drs. schools FAIL to teach them about tick-borne diseases in depth!
These future drs. should have in-depth education on all tick-borne diseases in the USA.
They get an "F" for passing the buck and failing our over 1 million+ of tick-borne disease patients in USA alone! Again, I am Betty Gordon from Ames, Iowa. Thank you for letting me speak today here!
I am also super happy that Olivia's mom, Holiday Goodreau, is co-chair of our 2022 committee. She is a bull-dog like myself so I see this committee being a success over previous ones where a patient/relative was NOT a co-chair to change the lives of all tick-borne disease patients in America!
I am a 33 year old male living in a small Mississippi town. First of all, I am not an expert, a scientist, or a doctor. I am a member of the Lyme patient community, who has spent many hours reading, researching, and desperately trying to regain my health. Through all of my own personal research and the many people I have met along the way in this journey, I feel like I have learned quite a bit about the state of tick borne disease in this country and how the perspective of patients is vastly different from that of the medical community.
A little about myself:
I have been "ill" for as long as I can remember with various, unexplained symptoms. I was actually born with a hole in my skull that required brain surgery. I was a miracle baby, so I have been often told. For some reason, I never could appreciate that like I probably should have. I recall life being tough since some of my earliest memories. As a child, I suffered from intense anxiety and quite a few other problems, including Attention Deficit Disorder, reading comprehension difficulty, and Tourette’s syndrome.
I had a very tough time fitting in and was often teased and bullied at school due to my motor ticks and personality differences. I also had other issues that would surface periodically, such as major digestive troubles, low blood pressure, slow heart rate, vision going black upon standing, back pain, joint popping, etc. Everyone, from family to doctors, seemed to either not have an answer for these symptoms or simply chalked them up to normal health troubles that everyone gets at some point. I was a child, though, and I now realize that there had to be something more. I'm not sure if it can ever be proven, but I fully believe I have suffered with undiagnosed Lyme disease my entire life.
I can't recall the first time deep depression set it. I remember needing counseling by about age 13. I just felt so different, so out of place, and didn't have the drive or motivation that everyone else seemed to naturally possess. As time went on, I suffered from anxiety badly enough, that I was taken to the emergency room on several occasions, feeling unable to breathe, thinking I was having a heart attack, but the results were always just that it was a panic attack. I ultimately had to drop out of college because of severe depression.
Eventually, as I got older and into my early to mid-20s, after much therapy, medication, and lifestyle changes, much of my issues improved. I got a job, I was able to finish my associate's degree, and I found some stability in my life. Then, fast forward to October 2018, everything changed. A tiny little tick attached to my leg would unleash a world of suffering. I just didn't know it yet. In Mississippi, Lyme disease isn't well-known about, though by now almost everyone knows or has heard of at least one person with it. I guess I lucked out because my doctor who diagnosed me had just contracted the disease a year prior. If not for him, I'd probably still be searching for answers.
I have actually had several doctors tell me of how rare Lyme disease is in this state and in the South, which is surprising since I have since learned of more than 30 people who live within about a 20-30 mile radius of me being diagnosed with it. Instead of it being rare, it seems like it is more rarely tested for and diagnosed, and even rarely reported. During my search for answers on how to get myself better, I learned that for whatever baffling reason, going from specialist to specialist in the southern states, claiming you have a tick-borne disease tends to raise eyebrows and gets you perceived as some sort of paranoid hypochondriac. It didn't take me long until I had enough of the doubt, the insults, and total lack of compassion that I gave up on traditional medicine.
I found comfort in speaking with others dealing with these same issues. We get each other, and we don't doubt one another's sickness. I have talked with doctors, pharmacists, nurses, and people from all walks who have been infected with Lyme, some I know personally and some from online support groups and forums. One thing that we all agree on is that the disease is very misunderstood, downplayed, and can be absolutely debilitating. How can the fastest-rising vector transmitted disease be such a mystery after all these years? Why has it had such incredibly little funding when compared to other illnesses, such as HIV, Malaria, and West Nile? Why are so many told that two weeks of antibiotics are enough, yet they never recover?
If you look at the long, growing list of celebrities with Lyme disease and learn of their experiences with the disease, you'll quickly see that the mild image Lyme has been painted with for so long really doesn't match the experiences of even the most prominent figures. Many have had their careers upended or had to give them up altogether. These are people with incredible resources and healthcare access that the average person doesn't have. Often, the average person is either told to deal with it, have their serious symptoms blame on something entirely, or are referred for psychological support, all while losing their jobs, being abandoned by loved ones and friends, feeling mistreated and humiliated by the medical system, denied assistance, etc.
Patients and their doctors have been begging and pleading for recognition of their lingering symptoms for decades, and after such a long period, the term Post-Lyme Treatment Syndrome has started to become commonly accepted. Supposedly, new research even shows that remnants of dead bacteria may be the cause of “chronic” Lyme. I have no doubt that a Lyme infection can cause permanent damage and dead bacteria can contribute to lingering inflammation, but I can tell you that the Lyme community, growing incredibly larger by the day, isn't buying this as the whole truth. Based on our own experience, opinions from quite a few doctors and scientists over many years, we feel It's a slap in the face and yet another way to continue denying us proper treatment. While we certainly welcome any recognition of our suffering that we can get, we do not feel that this is an accurate conclusion, and we still are left without answers as to how to get better.
I think I speak for the entire Lyme community when I say we say that we feel we have a lingering infection in our bodies, and we are deeply frustrated by the fact that this thought is so easily ignored and any evidence leading to support this view seems to get tossed to the side. Tests are so inaccurate that they are lucky to pick up infection to begin with, much less detect the stealth bacteria when it's burrowed in tissues, organs, and the brain, or in dormant form or protected by the biofilm it shields itself in throughout the body.
As I understand it, there have been studies involving monkeys that showed lingering infection after antibiotics. Also, there has been evidence of Lyme bacteria in the brains of previously treated patients during autopsy. From our own experiences, antibiotics tend to either reduce symptoms or cause die-off reactions, known as a herxheimer reaction. Someone who has been treated for Lyme disease would recognize this reaction very well. Normal people who take antibiotics for 10 days wouldn't know this feeling, yet we recognize it immediately. If the bacterium is dead, it doesn't make sense that we are experiencing such a reaction, months and years after initial infection.
There are ample stories of people being completely bed-bound or in wheelchairs, finally able to walk again after years of intense antibiotic or herbal therapy. It would seem a strange coincidence if there was no active, persistent infection for this to ever happen by chance. There's also the fact that many who have gotten mostly well after treatment experience a major relapse of symptoms when their immune system takes a hit, due to a surgery, immune-suppressing drugs, certain toxins, etc. When you truly look at these arguments in an objective light, does it really make sense that the sole cause of this lingering, debilitating condition is caused by dead bacteria? It doesn't to me, and it doesn't to the large community of Lyme patients, either.
There seems to be a major disconnect between doctors and patients. According to several studies and statistics I have read, the average Lyme patient goes undiagnosed for an average of 5-10 years and sees more than 20 doctors. By this time, major damage has likely occurred and a plethora of other diagnoses have been handed out, while the root of it all has gone unnoticed and untreated. With the incredible increase and presence of this disease, even in places once considered to be rare, I feel that this is a public health emergency, and sadly, most don't realize it, and most don't think it could ever happen to them. A large majority suffer with something that either they don’t know they have or something that has been historically denied, which is quite sad, considering all the lives that have been left in ruin.
We desperately need better testing methods. Standard testing, relying simply on antibodies, and requiring a strict amount of bands to be considered positive, seems majorly flawed. The presence of common coinfections, such as babesiosis and bartonella, need to be taken into consideration, especially in severe cases. Mine were overlooked for quite a while, even though I had severe symptoms that landed me in the hospital. Even then, no one would consider my condition a result of the tick bite.
More than anything, whether there's a cure on the horizon or whether there never is, what we also desperately need is more truth, proper validation, fairness, and compassion. We want to be able to trust our medical system. Yes, the same one that has left so many traumatized from the rampant gas lighting, the ignorance, and the huge lack of compassion. Lyme disease could happen to anyone, parents, children, grandparents, spouses, or us. Think about that. It is past time to have real answers for so many questions that many have been asking for such a long time. If we are ever to bridge the gap in thinking between the medical community and the Lyme patient community, it only seems fair that the patients and their doctors are heard, once and for all, and that our concerns be taken seriously.
I got better after my 2018 Lyme encounter, but a year later I relapsed and became sicker than ever. I am still fighting to regain my life back, although I am mostly out of resources and running low on hope. This disease has taken so much from me, so I feel like I have been led to join the fight for answers and hope for everyone suffering from Lyme disease and for those who will suffer in the future. If this disease has taught me anything, it's compassion. I'm not sure if my voice will reach anyone, but I have shared my experience and thoughts in hope that I could be a part of the difference we need.
Thank you for reading my story and for considering my opinions.
(Lyme disease patient in Charleston, Mississippi.)
Carl Tuttle, Member of NH Gov Chris Sununu's Lyme Disease Study Commission
Let me remind everyone that this Tick-Borne Disease Working Group wasn’t the brainstorm of the CDC, NIH or FDA. It was forced on Health and Human Services in 2016 through an act of congress after decades of patient testimony describing a disease that is destroying lives, ending careers while leaving its victim in financial ruin. So regardless of what you may believe, our public health agencies have failed miserably at the management of Lyme disease while creating a false narrative that Lyme is hard to catch and easily treated with a 2-4week antibiotic treatment protocol.
Read the written testimony published for each Tick-Borne Disease Working Group Meeting and it becomes crystal clear that we have been dealing with a disease far more sinister than the CDC is admitting. Why did it take an act of congress to recognize this? A TBDWG report recognizing the severity of Lyme has been submitted to congress in 2018 so why do we need years of meetings and where are the immediate studies to undercover how Lyme disease disables its victim?
Patients who have had a prolonged exposure to the pathogen and advance to late stage are almost always incapacitated but the focus for the past three decades has been on the acute stage of disease with bulls-eye rash. By avoiding the late stage horribly disabled Lyme patient population, (moral disengagement) you can perpetuate a near forty-year racketeering scheme to deny persistent infection and downplay its severity.
We have two standards of care for Lyme disease; one that uses open ended treatment until symptoms resolve and another restricting treatment to 2-4weeks leaving the patient debilitated while the CDC continues to ignore the hundreds and hundreds of publications identifying persistent infection after the standard one-size-fits-all IDSA treatment protocol. Direct detection methods have identified the Lyme disease spirochete as an antibiotic resistant/tolerant superbug.
Clinicians who treat long term are often harassed and have had their licenses suspended. Many states have passed laws to protect Lyme treating physicians. [REDACTED], the world’s leading pediatric specialist on Lyme disease has been practicing medicine for more than 40 years and has treated over 15,000 children and adolescents with Lyme Disease and other tick-borne diseases yet his record of helping patients goes unrecognized by our public health agencies. Why is that? I’ll tell you why, it’s because his success record doesn’t support the false narrative; a narrative that was hell bent from the very start on bringing a vaccine to market. A chronic relapsing seronegative disease DID NOT fit the vaccine model. I want to point out here that the FDA has fast tracked yet another OspA vaccine for Lyme in 2017 while this Working Group is in session. Is this why we need the multiyear delay/distraction of the TBDWG?
The Lyme patient population and advocacy groups all across America have been shouting “Foul Play” from the rooftops and no one was listening but now through Covid you are all witnessing the same controlling of the narrative for a one-size-fits-all treatment approach; Vaccines, PERIOD!
Anyone who questions the official Covid-19 narrative or has identified an effective early treatment protocol risks suspension of their license to practice medicine as did [REDACTED] of Ellsworth Maine. Once again, we have two standards of care but one is suppressed for the sake of a vaccine regardless if it is saving lives.
So that this can never happen again the real investigation here should be conducted on our public health officials who have far too much authority 10 and no oversight with lack of transparency 11 and conflicts of interest motivated by financial gain of the Bayh–Dole Act while captured by a pharmaceutical industry 12 literally calling the shots. I believe Senator Ron Johnson who is currently exposing the mishandling of Covid-19 would agree with my assessment.
If you’re finding this difficult to digest, I have two questions to ask of the Tick-Borne Disease Working Group:
1. Which public health agency/official instructed former Co-Chair of this Working Group, Dr. David Walker to make the following statement during the July 8, 2020 meeting?
“Persistent infection is a religious belief” 14 -Dr. David Walker
2. If Lyme is a simple nuisance disease, “Hard to Catch and Easily Treated” why then was there a rush to create a vaccine? (Root cause of Lyme disease mismanagement)
Member of NH Gov Chris Sununu's Lyme Disease Study Commission
Calling for a Congressional investigation of the CDC, IDSA and ALDF (97,000 signatures)
References: (Please read all of them!)
1 Petition Comments sent to Kristen Honey Aug 2018
2 Under Our Skin - Extended Trailer
3 Correspondence addressed to Assistant Secretary for Health, Dr. Rachel Levine
4 Lyme borreliosis: diagnosis and management (Tuttle’s letter to the editor of the BMJ)
5 Dr. Charles Ray Jones, the world’s leading pediatric specialist on Lyme Disease.
6 Valneva Receives FDA Fast Track Designation for its Lyme Disease Vaccine Candidate VLA15
7 Kyle Warner Vaccine Injured Challenges Fauci & Walensky
8 Review of the Emerging Evidence Demonstrating the Efficacy of Ivermectin in the Prophylaxis and Treatment of COVID-19
9 FLCCC Weekly Update Feb. 9, 2022: Doctors and Nurses Fight Back Under Attack
10 The Real Anthony Fauci: Bill Gates, Big Pharma, and the Global War on Democracy and Public Health
11 Exposing Fauci’s Web of Deceit
12 CDC and WHO Corrupt Financial Entanglements with the Vaccine Industry
13 COVID-19: A Second Opinion Senator Ron Johnson
14 Public comment: Does that sound like a religious belief, Dr. Walker?
15 Lyme Disease Is Hard to Catch And Easy to Halt, Study Finds
please urgently study any links between Lewy Body Dementia (lbd/dlb) otherwise known as Dementia with Lewy Bodies and Lyme disease and any other tick borne diseases. Please refer to this 2021 Frontiers in Neurology article for background:
Hello , my name is Deborah Olsen and I am writing to you in regards to Alpha Gal Syndrome and a potential consideration of a treatment.
Low Dose Naltrexone (LDN) works by increasing the body’s release of endorphins , which help modulate the immune system and inflammatory response to your body’s healthy tissues . It can alleviate all of the symptoms associated with Aloha Gal Syndrome . Such as fatigue , pain , hives, allergic reactions , and anaphlyxis, with no threat of addiction.
I would like to know why LDN has never been considered a potential treatment for people who have Alpha Gal Syndrome , since it’s a T-Cell suppressor?
Iweala Onyinye l, of University of North Carolina ( UNC) states that she is “exploring the role of Glycolipids and unconventional T-Cells in Alpha Gal Syndrome and the hypersensitive response“ created by the tick bite. If T-Cells promote allergic responses Why not conduct a study using LDN as a treatment to suppress the T-Cell response in Alpha Gal patients?
Thank you for all of your hard work and dedication toward research ,and further education in all tick-borne diseases and conditions.
Alpha Gal Syndrome
Dear Committee Members,
I am writing to share my story in hopes that it will bring awareness to the severity of tick borne disease, specifically Ehrlichiosis. I found a tick on my head the summer of 2019 and though little of it. After a few weeks I began to feel achy and was running a low grade fever. I thought it might be a UTI or just a bug. My daughter and I had booked a cruise out of Galveston and I thought I would be ok to go. I drove to Houston but still had headache along with joint and neck pain. I went to an urgent care in Houston where they did bloodwork but were not very concerned. We left on our cruise. I did well the 1st night but got very sick and began to hallucinate. The ship went to Cozumel where an ambulance took me off and to the hospital. I went into coma. My kidneys shut down, my heart stopped at one point. My brain swelled. I was on life support and had developed sepsis. After 10 days I was stable enough to air evac me to [REDACTED] back in Arkansas. Thankfully there I was seen by a cardiologist whose wife had been diagnosed with Ehrlichiosis and he compared our bloodwork. I was immediately put on Doxycline. They took spinal fluid and it was sent to [REDACTED] and came back positive for Ehrlichiosis. I was still in coma so they put in a trach and feeding tube and sent me to an intensive care facility. I woke up there after a couple of weeks. After I was taken off vent I was paralyzed from the neck down. I regained use of my hands there. They were able to take me off dialysis and I was sent to a nursing home for therapy to be able to walk again. Once I was able to walk with a Walker I was sent home with home services. I’m not sure that I would have survived if [REDACTED] had not been in the hospital that day and knew what was happening because his wife had the same tick illness. I have met so many people who have had symptoms and felt like it was from a tick and was told no. I didn’t develop any rash until after I was put on life support. I don’t know that I ever developed a rash on my head although all of my hair did fall out and I was completely bald. That same year our neighbor also got very sick and been bit so the immediately put him on Doxy when he told the doc about me. I am now blind in one eye permanently, I have so much pain and swelling in my legs and feet. I still have pain in my head and neck. I have trouble finding a doctor who will listen or understands how severe this was. For 2 years I thought I was losing my mind. I couldn’t remember. I stuttered. I didn’t know the names of common things any longer. I am better mentally now , much better, but it took 2 years for the fog to lift. I hope this story can help in some way. [REDACTED]
If I can be of any further assistance or can answer any questions don’t hesitate to contact me. Thank you
To Whom It May Concern:
In October 2018, I woke up at 2:00am with my legs burning. I couldn’t figure out what could be wrong, so I went to my bathroom mirror and saw the beginning of (what I now know to be) hives on my legs. I had never had an allergic reaction to anything before, so I poured through my medicine cabinet to find Benadryl, of which I had none. I threw on a turquoise coat over mismatched PJs and headed to Kroger (closed) the Walgreens (also closed) to buy Benadryl. While sitting in the parking lot, my mouth felt strange, so I sped through two red lights to [REDACTED] Hospitals’s ER where I was rushed straight in and treated for anaphylaxis.
Over Thanksgiving weekend, less than a month later, I was driving with my dad to Plains, Georgia to meet President Carter. On the way, we picked up french fries. Just a few hours later, the gives began again and, with the help of Benadryl, I got them under control without further medical intervention.
It took me nine more months and two more anaphylactic reactions to finally see a doctor about an alpha-gal test.
Why? Because alpha-gal was about an allergy to red meat, not potatoes.
My story is just one reason why more information needs to be made available to the public on alpha-gal. More than 34,000 cases of alpha-gal syndrome have been diagnosed between 2010 and 2018, and this number is quickly rising. For individuals like me who know nothing about alpha-gal or just the bare minimum, education and labeling are key to saving lives. Yes, saving lives.
It turned out, in my case, that the fries I ate were cooked in beef tallow. This information was not required to be disclosed to me. Items like “natural flavors” are also not required to be disclosed and, at least in my case, could also cause anaphylaxis.
While public relations, funding for research, and general acknowledgment about alpha-gal are undeniably needed, the outcome of these efforts will likely take time to show results. However, the labeling of mammal-based products now produced will, at least, increase the quality of life for individuals with alpha-gal, and at most, save lives.
Finally, as a mental health professional, the toll a diagnosis with little to no federal/public support is impossible to underestimate. Even the adding detailed labeling to food products would validate a syndrome that many people deem fictitious leading to understanding, support, inclusion, and validation for a condition that can lead to isolation, anxiety, loneliness, and depression.
Thank you for your consideration of my request.
Infectious Diseases Society of America (IDSA)
The Infectious Diseases Society of America (IDSA) is writing to provide input to the Tick-Borne Disease Working Group (TBDWG) ahead of its Feb. 28, 2022, meeting to review the work of the Working Group’s subcommittees and develop recommendations for its 2022 report to Congress. IDSA represents more than 12,000 infectious disease physicians, scientists, public health practitioners and other health care professionals specializing in infectious diseases. IDSA members focus on the investigation, diagnosis, epidemiology, prevention and treatment of infectious diseases. Our members care for patients of all ages with serious infections, including tick-borne diseases. We would be happy to serve as a resource for the Working Group. IDSA appreciates the work of the Working Group and its subcommittees and continues to strongly urge the Working Group to ground all its recommendations in the best available scientific evidence. Below, we have flagged critical areas for funding and support we feel the Working Group is best equipped to address.
Surveillance and Tick Ecology Studies and Funding
IDSA supports increased funding to expand and strengthen surveillance of tick populations and tick-borne diseases. The recent range expansion of several different tick vectors like Ixodes and Amblyomma spp. underscores the continued importance of surveillance in tick-borne disease prevention. Despite the necessity of surveillance efforts, studies have shown that less than half of public health and vector-control agencies in the U.S. engage in active tick surveillance. Even fewer entities conduct disease testing on ticks. Equipping state and local public health departments to conduct surveillance, disease testing, tick control practices and streamlined data sharing is important to prevent tick-borne diseases. Further, we support increased funding for more tick ecology surveys and studies that can help characterize tick populations and dynamics. Maintaining accurate, thorough and timely information on tick ecology is essential to inform prevention efforts.
Vaccine, Diagnostic and Therapeutic Development
Research on Lyme disease vaccines has increased in the past few years and should be supported. However, vaccines and treatments for tick-borne diseases with lower prevalence, such as babesiosis and anaplasmosis, are often neglected in research due to lack of funding and difficulty in mounting clinical trials. Further, therapeutic options for rapidly emerging tick-borne diseases like Powassan are virtually nonexistent. Funding should be directed to partnerships with industry in addition to vaccine and therapeutic development for these tick-borne diseases, including specific research areas like developing treatment alternatives to doxycycline for intolerant patients infected with Ehrlichia spp. Incentives that have proven useful in other disease areas with small patient populations and limited profitability should be explored for neglected tick-borne diseases — such as extended exclusivity, novel regulatory pathways, tax credits and research grants. Additionally, we support funding for the development of educational materials on licensed vaccines to boost vaccine confidence and uptake.
Improvements in diagnostic approaches for tick-borne diseases are also needed, especially direct assays for Lyme disease that accurately detect the presence of the bacterial organism instead of relying on “indirect” tests. Support should be directed to developing direct diagnostic assays with increased efficacy and accessibility to patients. To further support diagnostic efforts, additional resources should be focused on supporting and expanding existing biorepositories of tick-borne disease samples and developing new repositories. These efforts can increase access to necessary diagnostic samples for the research community and support the development of improved diagnostic assays.
Patient Access and Equity
Recognition of tick-borne diseases in underserved populations including African American/Black, Hispanic, Latinx and others is also critical. While rates of tick-borne diseases are often lower in these groups, it has been noted that diseases like Lyme are often detected at later stages in these populations, making these patient groups more prone to complications and delayed treatment. Many doctors are not trained to identify dermatologic symptoms of tick-borne disease, such as the characteristic rash of Lyme disease, on darker skin. Support should be directed to initiatives that educate health care providers on comprehensive diagnosis of tick-borne diseases in a diverse variety of patient groups. Additionally, support should be directed to increasing access to evidence-based health care for patients with tick-borne diseases, especially those in rural settings and underserved communities. Patients in rural areas often have the highest risk of contracting tick-borne diseases based on environmental exposure but limited access to infectious diseases physicians.
Many health departments also lack the resources to effectively share tick-related information with the public. Funding should be dedicated to communication and dissemination of evidence-based information to patients and the public, especially in regions with higher incidence rates of tick-borne diseases. Funding should also be directed to health departments to develop effective intervention strategies to mitigate the risk of tick bites in these regions.
IDSA urges that any educational materials and curricula for clinicians-in-training and continuing medical education must be based on well-designed experimental and clinical studies on Lyme disease and other tick-borne diseases reported in peer-reviewed journals. Reliance on the best available scientific data is essential to ensure optimal patient care and outcomes. IDSA continues to advocate for the inclusion of the best available scientific evidence in the Working Group’s 2022 report. Specifically, we encourage the Working Group to continue to adhere to the standard of only using evidence from well-designed studies reported in peer-reviewed scientific journals to guide its recommendations and reports. Ideally such studies should abide by the GRADE process to assess both level of evidence and strength of recommendation. We strongly urge that any recommendations in Working Group documents be supported by the best and most current research available.
IDSA thanks the Working Group and its Subcommittees for their work and attention to tick-borne diseases. We look forward to the opportunity to help advance evidence-based policy that will best serve patients and public health. For further collaboration or questions, please contact Amanda Jezek, IDSA senior vice president for public policy and government relations, at firstname.lastname@example.org
Jenny-Marie Greenough, LAc, Dipl. OM
To Whom It May Concern:
I am a licensed acupuncturist certified in Soliman's Auricular Allergy Treatment (SAAT) and have treated over 500 alpha gal allergy patients with over a 98% success rate (defined as a 70% or more reduction in their symptoms). The 2% who aren't dramatically improved are not ever worse, and most are at least a little better. This technique is a life saver for many of our patients and there is no other treatment that can provide the distinct reduction in reactivity and increase in quality of life to our patients with Alpha Gal. This is a non-pharmacological treatment that is safe, effective and changing patients lives for the better. My experience is not unique as a provider- all of us certified in this technique see dramatic improvements in our Alpha Gal patients.
Prior to my certification in this technique my conversations with alpha gal patients went like this: "Ok- so you've got alpha gal. Yes, I understand that you aren't currently reacting to beef, or dairy, only pork sometimes but you have to avoid mammal products and be aware that substances like Beano, carrageenan, and even sugar or water that's been filtered through bone char might cause a reaction..." A few months later after they didn't avoid dairy and continued to have a hamburger every now and then they ended up in the ER with a severe reaction...now they avoid all mammal in food, but they keep getting worse. Months or even years later, they can't be around meat cooking- the fumes cause them to react, they can only drink certain brands of water, their medication list of "safe" drugs is growing shorter and shorter...It's a long, progressive decline into an increasingly limited life.
Now my conversation with Alpha Gal patients is more like this: "Ok, so you've got alpha gal and the reactions aren't bad yet. Great, let's do this treatment. We will re-check after the needles come out and if you are planning to re-introduce mammal I want you to wait 1-2 months post treatment, re-check your IgE levels and talk to your allergist about how to do this safely. And in most cases- their IgE levels drop below the detectable level- they don't react when accidentally exposed and they don't get worse.
Or it sounds like this: "Ok, you have severe reactions to alpha gal- you had to use your epi pen after driving by Burger King and they were grilling burgers, you can't touch a cow without breaking out in a rash which sucks because you are a cattle rancher, you react to almost everything to some degree and your joints hurt and you feel awful all the time, let's do this treatment." And in most cases, they stop reacting to all those little triggers, they get their energy back, they can walk past a grill and not get sick, they can keep their farm and their cattle...this is huge for them.
Some notable case studies:
13 y/o female- constant reactions despite strict avoidance, AG diagnosed 2 years ago. Further investigation she was born with a heart defect and has a pig valve in her heart. The proposed solution is to replace her pig valve with a cow valve...clearly the cardiologist doesn't understand alpha gal. 1 SAAT treatment the reactions go away, her heart function improves and a valve replacement is avoided. Cross contamination no longer limits her- she can eat out with her friends. Her IgE levels dropped from 9.7 to .2 immediately after treatment to below .1 after 3 months.
78 y/o male- severe reactions to AG and any high histamine food- rashes, joint pain, migraines, fatigue. IgE levels 45. At one point was resuscitated by EMS after cross contamination with a small piece of bacon on his chicken sandwich. Post treatment: IgE levels .2 at 2 months out. Rashes, fatigue, joint pain and fatigue all gone. 4 months out accidentally gets green beans made with smoked hocks at a picnic- no reaction.
This is not just for alpha gal, but works with every allergen I have treated with it, but by far I treat more Alpha Gal than anything else- 90% of my SAAT patients are Alpha Gal.
This treatment needs better study, broader recognition and patients need to know they have options.
Dr. Julie Salzbrunn
I am a 61 year old chiropractic physician/acupuncturist. I have been in practice for over 25 years. In June of 2021, I traveled from Central Illinois to Huntsville, Arkansas to work as a Girl Scout residential camp counselor for the 2021 summer camp season. We had many class sessions outside, sitting on the ground with no ground cloth. Within 13 days I had been bitten by at least ten ticks. Those ten ticks were removed by myself or by fellow camp counselors, without a mind to save the ticks to send in for identification. Within a week I was having vague, mild symptoms of skipping heart beats, racing heart rate, fatigue and anxiety. I did not have a fever, nor a rash, nor any redness at the sight of the tick bites. I reported my palpitations; there was no nurse on site, and those symptoms were dismissed as "dehydration"; even in light of the multiple tick bites.
On the morning of July 13, 2021 I woke with my knee swollen and hot to the touch. As there was no medical personnel at the girl scout camp, I made the desperate decision to drive myself nine hours home to Illinois and see a physician for my knee pain and swelling and my increasing fatigue and heart palpitations.
I could not get in to see my provider right away so I went to the local prompt care. Physician said "since you did not have a tick attached for 48 hours, there is no way you have Lyme or any other tick disease". I was given a single capsule of Doxycycline and was told that it was all I needed. If only that were true...
My symptoms spiraled out of control. All the while, for the next month, I did not display a high fever, nor a rash. I started to have periods of extreme exhaustion, nausea, chills and a very strange symptom of waking up at 2:30 am with a very fast heart rate, dizziness, nausea, shaking, nerve pain fleeting in my hands and feet and the most godawful headache. The worst headache I have suffered in my whole life, for weeks on end.
Over the next six weeks I went to the emergency room many times with middle of the night symptoms of tachycardia, nausea, headache, fatigue and sometimes crushing pain in the center of my chest. I was given many diagnostic tests. CT scans with contrast, a botched CSF tap which lead to a CSF leak from my lumbar plexus and required a blood patch to stop the leak. Ultrasounds taken of the abdomen and pelvis; finally an astute ER doctor suggested a tick borne disease panel. The result was an extremely high positive for Rocky Mountain Spotted Fever.
I was given two weeks of capsule Doxycycline. I reacted to that antibiotic with an even WORSE headache, nausea, more high heart rate within an hour of ingesting the capsule. I looked into my symptoms and found Alpha`Gal Syndrome. The more I read, the more the symptoms fit. For me, GI uproar and tachycardia and now, reactions to meat being cooked and cheese being melted in the oven were sending me into allergic panic! Back to the ER. No one had heard of Alpha gal syndrome. Even the pharmacist did not know what it was.
Before the two week prescription ran out, I begged my physician to give me three months of liquid doxycycline. He resisted, but complied with my request. In my searching the internet for relief I stumbled across the SAAT treatment for the alpha gal allergy. I was one of the people who had the symptoms of alpha-gal allergy but my blood test came back negative. I did not care. I knew I was reacting and was fearing for my life as the fume reactions were lasting longer. I sat outside the fire station when I was near anaphylaxis for two hours waiting for symptoms to stop. I could not swallow. I was scared to death but more scared of being labeled a hypochondriac by the medical personnel, so I stayed outside until those symptoms passed. I booked an appointment for the SAAT acupuncture.
I received one needle in my ear for Alpha-Gal allergy. That night I slept for 15 hours straight. I was on the road to recovery!! The fume reactions were gone. Immediately. I chose not to go back to consuming any mammalian product.
Being an acupuncturist for over 25 years, I was stunned, amazed and certain I could learn this SAAT technique and help people in my state with allergies in general and alpha-gal allergy in particular. I took the course from the doctor who researched and developed the acupuncture treatment. I passed the certification examination. I now offer the SAAT treatment in Central Illinois.
However, my biggest concern is that with all the knowledge we have regarding tick-borne disease, there is not a lot of PREVENTATIVE information being disseminated to the general public about preventing the tick bite in the first place, treating the bite with doxycycline immediately and running a valid tick panel IMMEDIATELY, with follow up blood tests and further treatment.
My goal is to inform all the physicians and pharmacists in Illinois about the looming increased threat of tick borne disease in general and Alpha gal allergy specifically. My second goal is to educate Girl Scouts and their leaders about prevention of tick-borne disease!
Thank you for your consideration,
Dr Julie Salzbrunn
Bloomington Wellness Center
Chiropractor/ Acupuncturist/Certified SAAT Practitioner
Rocky Mountain Spotted Fever Survivor
Alpha Gal Allergy Survivor
Jefferson City, MO
I am writing this email, strictly as a newly diagnosed patient, to express my concerns regarding research, funding, safe labeling of foods and education of the medical world for cures and/or treatments of tick-borne diseases.
I am approaching my one-month diagnosis of Lyme Disease and Alpha Gal Syndrome. I have been forced to learn so much. Most everything I have learned is via the internet and support groups on social media sites. My primary care physician actually knew of Alpha Gal Syndrome only because I am her second patient with this diagnosis. When my allergist gave me my diagnosis via a phone call, I was told to simply stay away from red meat and dairy and to google Alpha Gal in order to learn more. Quite honestly, I think that this is the first time I was told to google a diagnosis. Most doctors will tell you to stay away from the internet. I actually think, in just a few short weeks, I know more about AGS than my allergist does.
In my first couple days of research, I went from thinking that I just needed to stay away from red meat and dairy. Wow!!! AG is in almost everything!!! What a life-altering diagnosis! It isn’t just staying away from red meat and dairy.
I was diagnosed with Crohn’s Disease roughly 10 years ago. Was that a life-altering diagnosis? Absolutely! Honestly, Crohn’s is easier to manage than AGS and Crohn’s is definitely not easy to manage!!!
AGS now has me having to think through every aspect of my medical care...
1) When I have my colonoscopy, what about the anesthetic?
2) When I have my eyes dilated, what about the solution used?
3) What about any prescription I need? Do I have to have to worry about what the meds are coated or contained in?
4) What about the substance used for polishing when I get my teeth cleaned?
These are just a few thoughts that have occurred to me since I began researching AGS. How do patients educate doctors who haven’t heard of this? When I recently saw an ankle surgeon (thankfully I don’t have to have surgery), I mentioned AGS to him. He looked at me like I was crazy. He had never heard of such a thing.
Grocery shopping is an entirely new adventure. All labels have to be checked for ingredients. I had never ever thought or heard of Carrageenan (just one of many ingredients to avoid). Apparently, it is something to avoid if you have AGS. I can’t tell you how many times I read a label and get to the last ingredient and .......... it is Carrageenan. Going to the grocery store has become emotionally defeating. I have quickly learned to just check the last few ingredients for the “no” ingredients and it will save me time.
So many of my fellow Americans are struggling with the high price of groceries due to inflation and supply chain issues. I thought my grocery bill was atrocious roughly a month ago. Now, with the types of food I have to buy, my grocery-buying is inflation on steroids. And... unfortunately, the increased spending isn't just on groceries. I take several supplements to help manage my Crohn’s. Now I have to buy supplements that are vegan so as not to have a reaction to something as simple as a gelatin-coated pill. My supplement cost per month has more than doubled.
I am a retired mathematics instructor. I have spent some of my research-time in looking at how these tick-borne diseases are exploding. Ticks may be tiny, but they are a Huge problem.
As a newly diagnosed AGS patient I can only hope that there is a cure for AGS and other tick-borne diseases on the near horizon. For this to happen, there MUST be a substantial appropriation of funding. This must be the number one priority. Secondary priorities, but absolutely necessary priorities, include education of the medical field and appropriate labeling of foods and other consumables.
Thanks for reading.
There is so much to be done surrounding Lyme and coinfections that I find it difficult to decide where to begin; from unproven treatments and therapies that people waste their life savings on and go into debt, to issues with public perception and lack of the most basic understanding of how debilitating and serious Lyme disease is...
The easiest place for me to start is with our story, and daily lived experience. My partner spent her entire young life with an illness described as “chronic fatigue syndrome”. She and her mother had the same lab results (high titers of Epstein Barr virus and cytomegalovirus) and suffered from the same symptoms of exhaustion. You and I would describe it as feeling like we have the flu; like we “got hit by a bus”. Their unexplained illness you might expect was later found to be Lyme disease, which they both tested positive for using Igenex lab testing. It was after almost 20 years in her case, and over 40 years for her mother. They were elated to understand the cause of their suffering. What happened next was a course of antibiotics to finally be healed and to begin a normal life.
It was too good to be true. What has transpired since is not just a persistence of symptoms, but a worsening of symptoms they never imagined. All the while learning more about how “controversial” their illness is. How the lingering symptoms are not thought to be an active infection, but something else unexplained. Not only that, but amid this medical skepticism is also a public obliviousness at how debilitating the disease is. In some instances, there are people who are skeptical my partner and her mother are truly sick at all.
Whether it is the silence and sideways glances when you discuss your illness with friends (and even family), or watching television shows and comedians flippantly joking about Lyme and the people who have it, sometimes it feels too much to bear. There is also the prevailing thought of the medical community at large that this illness is easily treatable with a 2 week course of antibiotics. If you still have lingering symptoms after treatment, this is unexplainable! Post Treatment Lyme Disease Syndrome we will call it! Sometimes this simplest explanation is the best one... that people are still suffering from an active infection that better testing would prove, and more specialized antibiotics would treat.
This forum is a rare opportunity to address those of you who have any level of power to alter perception among the public, but more importantly the medical community. It is a rare opportunity to address those of you who champion our cause, and those of who are skeptical of our story and follow the common medical narrative. This is a chance to be on the right side of history when the truth comes to light. When the science behind chronic Lyme disease is proven without a doubt. I sincerely thank those of you working to secure funding for research, better testing, and effective treatment. Thank you for this opportunity to share our story and perhaps affect some change.
I am writing regarding the current difficulty to get proper coding for alpha-gal syndrome and education of medical professionals and care-givers.
Three years ago I went hiking in a neighboring state, which I now know has a large tick presence. While I only saw one tiny tick the whole week I was there, I received over 150 bites on my body one day. Because they itched horribly, I assumed that they must have been "chiggers" and never dreamed that they might be the result of larval ticks. The reaction from these bites was miserable and it was a month before the itching had stopped and the bites mostly faded. Unfortunately, two months later I went into anaphylaxis after eating a hamburger and my journey with Alpha-gal Syndrome officially began.
Because Alpha-Gal is somewhat rare here in Louisiana, physicians and other care providers are absolutely clueless when I tell them about my condition. Even the allergist who diagnosed me (thankfully he had attended a conference with Dr Platts-Mills) only knew to avoid red meat. My internist looked at me with a blank look when I explained the diagnosis, despite the fact that I brought papers that explained the syndrome along with me. Each year, at my wellness checkups, I explain that it is my biggest medical concern, yet it is still not even listed on my record.
One of my biggest fears is to have the need for hospitalization. With not even a known code to use to label the condition here, there would also be no one there that understands the condition and the potential for severe reactions from ingredients in food and more importantly, in medications. Without adequate coding for the syndrome, I am left with things like "other allergies" or "allergy to heparin." I wear a medical alert tag, however there is only so much space on them, so it is impossible to list every potential problem ingredient.
I am extremely cautious with my diet and the products I use on my body, reading all the ingredients on labels and calling manufacturers to check on undisclosed ingredients. I rarely eat out because of the risk of cross-contamination (which is what usually leads to any reactions I have these days). However, all of that could be for naught if I were to hospitalized for any reason in this area.
Please consider the need for proper medical coding and education of medical personnel in regard to Alpha
My name is [REDACTED],. I am a Nurse Practitioner. I am married and have four children. I have lived in Arkansas since 2000. My story starts in 2001. I lived with my husband and three children in [REDACTED], Arkansas on 20 acres of land. I started having hives at random times. I would take Benadryl and they would go away. I attributed the hives to a very stressful job and family life, but the hives were starting to come more often. I thought maybe it could be food-related, but it was very random and mostly in the middle of the night. I could eat a steak or bacon one time and be fine, the next time wake up with GI upset, swelling, and hives. I saw my doctor who didn't know what to think but prescribed me Benadryl and Pepcid. One night when I was patrolling for law enforcement, I ate a BLT sandwich at midnight, and on my way home about 0530, my hands started to burn and itch. My family was visiting family in Chicago, so I was alone. I was asleep in my guest house, I took Benadryl and Pepcid and went to sleep. I woke up with severe chest pain, facial swelling, and severe hives. There was not a phone in the outbuilding so I tried to make my way to the house. It was about a 30-foot walk. I passed out four times getting to the house. I was not in my right mind but called the clinic and they agreed to see me. I drove there (not the safest thing to do) I made it to the clinic and was in full-blown anaphylactic shock. They called an ambulance and transferred me to the hospital. I was close to death and admitted to ICU. After that, I was prescribed Decadron and an Epi-pen if it happened again. It never occurred to me this was from a tick. I continued to have hives and had to an Epi-pen seven times with ER visits. I started to see a pattern when I ate too much meat. For instance, I ate deer for the first time and I was ok, no reaction. The second time I had deer jerky and had a severe reaction. I stopped eating mammal, but noticed I would get sick eating dairy, which progressed to all ingested mammal. I had horses and became severely allergic to them and our dogs. I've always had cats and I'm ok (even though I tested allergic to them) unless I get scratched and I will get hives. It continued to progress to clothing, fumes, all mammal in products and foods, to mast cell activation syndrome, and eventually histamine reactions to almost everything.
Through the years I had been bitten several times, as well as my family. I had tick fever three times and was treated. My husband and son had severe Rocky Mountain tick fever, my daughters have had tick fever and one had Cat Scratch Fever, which they think was transmitted by a tick. In 2009 my youngest daughter started getting very sick. She would have hives, extreme GI upset, and started wheezes. My oldest daughter had severe GI upset lip/facial swelling and passed out. We decided to get tested for allergies. My daughters and I tested positive for pork, beef, lamb, cat, dogs, horses, and dairy. Class III and IV. I don't believe we got tested for Alpha-gal until later when there was an actual test. I have had several tick bites over the years. In 2009 I had Mohs surgery for skin cancer and had to have several layers of sutures. They used cat gut and I blistered from the inside out. I became allergic to medications as well as foods. I started researching mammal products and basically became vegan/vegetarian. In late 2016 I received a flu vaccine that was supposed to be 'safe', I had a severe reaction. In 2018 I was going in and out of SVT and was scheduled for a heart ablation. I was premedicated with Benadryl, high dose of steroid, and H2 blockers. I ended up coding twice and they had to shock my heart to come back due to the amount of Heparin they had to use. They stopped the procedure and I was never able to have that test or procedure again. Another time I was experiencing leg pain, weakness, and was given an ultrasound. It showed my great vein was not filling correctly and had bifurcated into many areas filling up with blood. The doctors decided to use Schlerofoam. I was very nervous but they assured me they had used this product on another patient with Alpha-gal. Within minutes my nose started to run, I started to hive up, and became severely allergic to the compression stocking. Due to the severe reaction, the product was checked and it turned out the product they used on the other patient came from America, the product they used on me came from Germany and had five ingredients, three of which were mammal. It is not possible to remove the product, therefore my reactions became severe. Fumes, GI, animals, swelling, hives if scratched, if I got too hot, too stressed, cold, pressure on tissues. I did get bit twice in that time and had tick fever twice. I did not get tested for all tick illnesses, I chose to be treated instead. I am very careful to buy only vegan supplements due to having bought niacin and had one of the worst reactions yet. Two rounds of medication and epinephrine. Almost an ER visit. I found out niacin can be mammal or vegetable. My family has become accustomed to the allergy so we are very careful, but sometimes cross-contamination, or forces beyond our control will spur a reaction. My girls eat well, but still react. Recently, my oldest daughter has been diagnosed with cold urticaria which was brought on from covid. It is very severe due to Alpha-gal. So now she gets hives and swelling from touching cold or drinking cold. We are currently seeking alternative treatment for that.
Through the years I have tried to educate medical personnel and the public on the dangers of Alpha-gal and other tick-borne illnesses. Especially in the ER and Urgent care. If someone came in with unknown hives, I would tell them to stay away from all mammal foods and products until they can be tested. It is becoming very prevalent in Northwest Arkansas. I recently spoke with a lad in Pope County, Arkansas, she said she has it as well as all her family, except her husband. She also stated many neighbors and people in her county have the symptoms, some have been tested, but she states there isn't any doctors that can test, treat, or even know what it is.
I can go on and on about reactions. I know what I can have or not have, I look at all labels, research ingredients, use only vegan body products and supplements. I do not have mammal foods or products in my home. I am currently working on opening up an Alpha-gal clinic in Fayetteville, Ar. I am hoping to help and educate as many people as possible.
I hope this is helpful and can open the doors for more research, label transparency, medication ingredients, pharmacies on board, medical education for providers and medical staff, and really overall awareness for the public. I am available for comment if need be. Thank you.
Colorado Tick-Borne Disease Awareness Association
Dear TBDWG Panel Members,
I participated as a subcommittee member for the TBDWG for both the 2018 and 2020 reports to Congress. Formerly a fully functioning professional wildlife biologist, the work I performed for the subcommittees took months to recover from after each effort. I am not a malingerer but a passionate and dedicated advocate promoting the changes needed to prevent others from this life changing impact to health and wellbeing. Patient needs must be the priority of the working group for this final phase of the panel.
I am president & cofounder of Colorado Tick-Borne Disease Awareness Association. I am also a patient with chronic Lyme/other tick-borne coinfections and conditions. I live with chronic Lyme disease, I have cared/care for children and a husband with chronic Lyme disease, and as an advocate I provide support and resources for a growing number of patients faced with Lyme & other tick-borne diseases/conditions. The resources available for patients are woefully inadequate, and have been for decades.
I would like to bring thoughtful attention to the patient community. Lyme and other tick-borne diseases and conditions have derailed the lives of uncounted numbers of people for decades. Patients have died from tick bite-related causes, either directly from infections to the heart, brain, or other organs and systems or from suicide when patients cannot bear the prolonged physical suffering and mental health impacts brought on by the infections directly; or indirectly from the harm they suffer from the stigmas they are subjected to associated with a diagnosis of Lyme and other tick-borne infections. Patients and caretakers are desperate for diagnosis, treatment, access to care and support for themselves or for their loved ones.
Many of these patients knew little about Lyme and related conditions prior to getting sick and were unaware of their risk for disease and how to prevent it. Many did not know the signs or symptoms of acute and/or chronic infections and could not access supportive medical care early in their disease. For many patients, their medical providers lacked awareness, education, training, and experience to quickly recognize and properly treat this growing number of tick-borne diseases and conditions. Misdiagnosis at this acute stage has led to a growing number of chronically ill people in the US public, and greatly impacts high risk populations, especially our children.
The monumental effort needed to access accurate diagnosis and treatment for Lyme & other tick-borne diseases and conditions is unacceptable. Too many patients spend years seeking proper diagnosis and treatment, while suffering crippling physical and financial burdens, loss of careers, and relationship stresses beyond what many families can endure. Growing numbers of children are newly infected each year.
We don’t know how many unborn children die from tick-borne diseases, or how many enter this world having acquired them through maternal-fetal transmission. But growing numbers of children and families are suffering.
We have no count of the American public that suffer from chronic or persistent tick-borne infections and conditions due to delayed diagnosis, ineffective treatments and/or persistent symptoms of disease and disease processes that are yet to be understood.
I thank you for the work and time that each of you on the TBDWG panel and your subcommittee members provide. The need for reliable direct tick-borne disease testing, curative treatments, physician education, and effective prevention tools are of paramount importance to the patient population. I urge this panel to thoughtfully address these identified gaps in the science and carefully consider directions that provide the greatest impacts to the patient population. These must be the priority.
Please review my story. See the face that goes with the story. Mine is one of just countless sufferers. https://www.lymedisease.org/monica-white-tbdwg-comments/
Dear Tick-borne Disease Working Group,
I have a Ph.D. from Leiden University together with Naturalis Biodiversity Center, The Netherlands, and my work explores the drivers of ecological niche and morphological diversification through phylogenetic analysis and quantitative morphometrics. I am currently the Director of the Science, Math, Business and Economics Learning Centers at Kalamazoo College in Michigan. One important aspect of my job now is recognizing adversities and cultivating opportunities of growth. So, thank you for forming this group and opening the forum to hear people’s stories to cultivate growth for a system in much need of change. It is with that, that I would like to begin to tell my story.
As an academic, I had a pretty fiery ambition in my field and extracurricular activities. I attended conferences around the world, published in top tier journals like the journal Nature and had interviews featured in large public media sources like the BBC and National Geographic. I ran, played beach volleyball and backpacked through remote forests in the spaces in between all of that. This all said not to boast, but to give a context for the contrast. It was a pretty idyllic life.
Then things changed. It was Father’s Day. My body suddenly felt limp, like flowers left in a too hot car. I remember asking my husband if he was weirdly tired body-wise after what seemed like a normal day working in our garden. Weeks later, my jaw spontaneously dislocated. The dentist prescribed physical therapy, and after a few long months, that seemed to get better. Then, an expanding rash on my left flank. The fast-care doctor told me not to worry and prescribed a topical steroid. Being a scientist, I was quite curious about the underlying reason for a new large rash of this sort, but the doctor dismissed the idea that it might be anything other than a very ‘normal’ dermatological issue.
Months later, my knee swelled to the size of a watermelon. One doctor took an x-ray. Another told me that I was ‘no Olympic athlete’ so there was no need to investigate my knee further. Once able to get an appointment to see my primary doctor, he ordered a plethora of diagnostic tests including those for Lupus, Rheumatoid arthritis and more. He sent me to a rheumatoid arthritis specialist despite those tests coming back normal. The specialist told me that I did not have any diagnostic results that indicated RA. He suggested to my doctor that one possibility was that it was an Epstein-Barr issue. No diagnostic tests were carried out for that, no differential diagnoses were discussed. They told me there was nothing they could do for me. Meanwhile, my joint swelling resolved in the original knee, migrated to my other knee and then to my ankles. The swelling was so intense that I was unable to walk for weeks. One doctor told me this migratory joint swelling does not occur in Lyme disease otherwise they would test for that.
After months, that joint swelling montage resolved on its own. Other strange things trickled in. One morning, I woke up and was unable to move my left shoulder for an hour. ‘Did I sleep wrong,’ I asked myself. It seemed so natural to explain away all of these VERY strange body events. There were many. I found myself word searching on an uncomfortably regular basis. Eventually, I couldn’t spell my own name or speak a full sentence. I was SO tired ALL the time, but how do you describe that in a way that is heard? We are all tired, right? And this one is hard to explain, but I became quite an anxious person about small things like a tree that was leaning close to my bedroom window. Those were not ‘normal’ Rachel thoughts, not from the one who felt very comfortable exploring the world before all of this. Looking back, I wonder if my body put me into a constant state of fight or flight. It was unnerving to say the least, and debilitating in its extreme.
About a year after my initial symptoms, my left knee began to swell again. My wrists began to ache as well. Once whike walking, my ankles completely folded onto themselves like there were no supporting muscles, ligaments or tendons. Strange doesn’t begin to describe it, so again, I called my primary doctor. He asked me how my family life was going, and honestly, it was a very marginalizing, stereotype threat enforcing question to ask. My family life was fine. I insisted that my body was not. This insistence was the only thing that moved me forward in the system. I wonder what might have progressed if I didn't feel that I was able to insist past the wall of symptom dismissal.
Off to a sports medicine specialist I went. An MRI was ordered. All normal again. While the doctor was pulling the fluid from my VERY swollen knee, he commented on the cloudiness of the fluid. And that it could indicate infection. He asked me about my job and exposure to tall grass. This doctor goes on to tell me that he had Lyme disease in the past and wonders if he could order a test for that. The Lyme total Antibody test came back positive. My primary care doctor said that he could not order antibiotics or make a diagnosis until a second IgG WB and IgM WB test came back positive as well. Clearly, this is not the case as a clinical diagnosis is all that is necessary according to the CDC. Alas, my bloodwork came back positive for 7 bands. I never saw a tick.
It feels empowering to tell my story. Not everyone has that chance or has the words to be able to do so. I have privilege. I had free access to peer-reviewed journals and am lucky enough to have an educational background that enabled me to navigate the complexities of scientific jargon. And enough health to be able to turn knowledge into action. I was sent to several specialists and doctors over those 14 months. Lyme was missed so many times and I am lucky to have had the sports medicine doctor that had personal Lyme experience. Who knows how long it would have taken otherwise to receive an accurate diagnosis? Who knows how debilitated I would have become without appropriate intervention? The story is frustrating and it is important.
I would love to be able to tell you that after a short course of antibiotics, that I moved along my spritely academic way. While feeling unheard and marginalized might have felt like the worst part of this disease, the most painful part physically came after diagnosis. I think I had the impression that when you take a medicine, you slowly get better. It didn’t feel that way for Lyme, at least not in my case. I developed neuromas in my feet that prevented me from walking, insomnia that was maddening and my heart would race at 140 beats per minute doing normal tasks like brushing my teeth. Then came shooting pain in my calves and left arm that felt like icepicks being stabbed directly through your body. Such extreme pain that is distracting in a way that prevents joy, prevents reveling in the happy play time with your 2-year-old daughter, it keeps you from your career that you love. When I think back on this time, it is with grief and it erupts a fiery vigor to be an advocate for change.
I am symptom free now. It took me almost 2 years on antibiotics to get there. Was I willing to live with the pain that was still going on at the 21-day doxycycline stop mark that was the CDC guideline at the time of my intervention? No. I read the peer reviewed research articles of persistent forms, and found an incredible Lyme literate doctor. I have read ALL the past and current research with Lyme, as I am sure you have. I made the right choice for myself given the information that I had available. I am glad to see the CDC guidelines have changed to some degree. There is more work to do.
At the macro level, my hopes for your work include the following:
- To encourage testing for Lyme more broadly.
- To fund new diagnostic testing methods.
- To educate providers and the public about false negative rates for early testing and otherwise.
- To educate providers and the public on a broader scope of signs and symptoms (i.e. not all have a trademark bullseye rash, also the intermittent nature of symptoms, the delay in symptom expression etc.).
- I believe strongly in funding research on this rapidly growing and debilitating disease, especially in the areas of disease manifestation, the manifestation of associated psychiatric disorders, studies on the impact of this disease in marginalized populations (including those with psychiatric conditions and more), and please do invest in human clinical trials on a diverse range of treatments, treatment lengths and for those with late disseminated Lyme and/or persistent symptoms.
I admire your work. You have the chance to be a powerful voice, an ally for the disabled and for those marginalized and suffering. Thank you for the opportunity to contribute to your important work.
With kindest regard,
Dr. Rachel Love (Schwallier)
My name is Sandra Hurley age 76. I live in Sanford North Carolina. I worked as a RN for over 40 years. It was my misfortune to receive a tick bite in 2016 at my home in this city. I had a year of declining health suffering with night sweats, choking, excessive mucous in my throat, rapid heart rate. Tightness in chest. After many nights. Not every night but enough to know something was changing and it wasn't just the aging process that was making my throat close at night. I started seeing doctors, family medicine, who would take labs and say all seems good just getting older. Rheumatology x 2 more labs always results of inflammation. Etiology unknown. Chronic joint pain but no rheumatic arthritis. Take tylenol was the instruction as I had allergy to Ibuprophen. Allergist when given my history of complaints, was told take more antihistamines double usual dose, use nasal spray, vacumn often. Then when a rash appeared one morning and spread over my whole body except face and hands over a few days causing extreme itching returned to allergist and after assessing rash was told I had scabies. I did not accept this. Being a nurse I knew better. I was given the topical, had to stay home from work and no improvement ocurred. Dermatogist with next labs taken, allergies reviewed and steroid injection and topical given with some improvement. I was back and forth with all these doctors for a year. Gave up on some. Continued with allergist. Tested for RMSF by Rheumatologist and Lyme after rash. All negative. All this time same nightly choking, coughing throat swollen, rapid heart rate, cold sweats. A year had passed, lots of money spent, time away from work. Still no answers. Then 1 night the episode choking was so severe. I thought I needed to call ems. Made appt. With allergist. Gave my complaint. Was asked times of occurrence said 2 am during sleep asked what were goods eaten and when, 6pm pork loin and vegetables. Was told maybe I had alpha gal allergy. Asked What? Was told mammal allergy. Labs were taken. Received email 2 weeks later that read, 'don't eat any furry animals'. That alpha gal was present. Thats all! I was lost in this unknown diagnosis. Tried to find help from another doctor friend who was aware and connected me with a patient with the same who might help me know what to eat. So the fear, anxiety, depression started and remains just not as bad. This is just a small part of how hard this tick illness is to handle. I have used this format because I think it is of utmost importance. If I had only had some support from medical professionals I would not have suffered so long in anaphylaxis. Been misdiagnosed. Prescribed the wrong meds. Became anemic, B12 deficient. Low VITD. lost teeth and thousands in bridgework due to inadequate nutrition. Lived in fear and pain. Lost 30 lbs. Just to name some of the things with my alpha gal in the past 6 years. This is the key for improved care for this unusual condition.
As a closing statement I want to make public my support of the SAAT treatment. This was like a light in this dark tunnel of suffering. I received my first treatment March 2021. I have been improved since. I still don't eat mammal by choice. I Feel hopeful, believed and understood by the team at my provider's clinic. I have learned a great deal from all the Facebook alpha gal groups. I depend on these people to help me keep informed with new findings and personal experiences I can relate to. All people with alpha gal have, out of necessity, had to do this to take care of ourselves and in some circumstances stay alive. Thanks to all who devote their time to help others.
Hello from Virginia.
I am writing to express some of my concerns about tick borne conditions and the challenges involved.
I am diagnosed with Alpha-Gal Syndrome and Lymes disease.
I recently underwent a procedure by a well known and respected Neurosurgeon. Due to the lack of knowledge of these conditions, this brilliant man had to repeatedly ask which medications I could take, since I could have nothing with mammal or dairy. The pharmacist, anesthesiologist and oncologist all came to me with many, many questions as this was so new to them. Luckily, in my five years since diagnosis I have done my research so they did not kill me....this time.
I also am in the medical field, but dental surgery. It is so difficult to treat a patient with Alpha-Gal because everyone's reactions are different. We know that collagen, resorbable sutures and gelatin are not safe, but what about adhesives, cements, impression materials, filling materials and such? Without proper, CLEAR labeling (ie: includes mammal) we cannot guarantee safety.
Once again, medications. I cannot safely prescribe an antibiotic or ibuprophen due to the many varied inert ingredients.
There needs to be an industry standard, and this includes food labels as well.
Are you aware people with Alpha-Gal cannot have marshmallows? Or shampoo can make us have a reaction? Even bread. It contains mono-diglycerides. How many average people would know this could be mammal?
I thank you for all of your due diligence in trying to make us safe, but we still have quite a ways to go. Awareness is key to our survival!
Both my husband and I have alpha-gal syndrome (AGS). I am the founder of the Alpha-gal Syndrome Awareness Campaign and creator of the Alpha-gal Information website (alphagalinformation.org). Here are my thoughts about the challenges of AGS and opportunities to address them.
1.0 Alpha-gal Syndrome: The Problem
1.1 Not just a red meat allergy
Alpha-gal is in:
All mammalian meats and meat products
Over 600 mammalian byproducts. A complete list of mammalian byproducts doesn't exist, so we don’t know the exact number.
Gelatin, carrageenan, and mammalian byproducts are added to thousands of foods including foods that you wouldn’t think of, such as seafood, poultry, vegetables, cut fruit, powdered drink mixes, dairy-free milk alternatives, fruit juices, cereals, and thousands of processed food items.
When classified as “processing agents,” gelatin and carrageenan are not usually listed on packaging.
Alpha-gal is in thousands of drugs and medical products.
Alpha-gal is also in innumerable personal care, household, and even industrial products.
There is literally no category of food, personal care, household or medical product which cannot contain one of the above.
1.2 Eating out and travel can be almost impossible
Eating out and travel are difficult for those who are most sensitive to alpha-gal because:
Unlike other allergies, alpha-gal is in fat. If you have ever worked in a restaurant kitchen, you know that a thin layer of fat coats everything.
Foods cross-contaminated with mammalian fat can cause reactions.
Finding restaurant food that isn't cooked in a pan or grill or oil that is contaminated with mammalian fat is virtually impossible.
Often the only foods I can eat in a restaurant without risking a reaction are oysters, sushi, and salad (no bottled dressing).
~10% or more of us react to aerosolized alpha-gal, especially aerosolized mammalian fat from cooking meats.
1.3 We live in fear of medical treatment and hospitalization
Tens of thousands of drugs and medical products contain alpha-gal. Some have killed people with alpha-gal within minutes of administration.
There is no list of these products, and it can be difficult to identify them.
Often comparable substitutes aren’t readily available.
Imagine going to the hospital with Covid knowing that you are allergic to heparin and unsure of whether you will tolerate monoclonal antibody treatments or not. That’s our reality.
Some of you were afraid to go to the hospital during a Covid surge before you were vaccinated. That’s how we feel all the time.
1.4 There’s more...
Up to 5% of us develop mast cell syndrome-like symptoms
AGS is associated with chronic disease, like atherosclerosis.
~60% of us have anaphylactic reactions. For 30-40% of us this includes cardiac symptoms.
As if it couldn't get worse, if we are bitten by additional ticks, it usually does get worse.
2.0 Alpha-gal Syndrome: Opportunities
2.1 Raise awareness
AGS is estimated to affect up to 3% of some U.S. populations and is massively underdiagnosed. We need to raise awareness, and we need to focus our efforts where they will have the greatest impact.
2.1.1 Raise awareness among healthcare providers
By focusing on healthcare providers we can leverage awareness efforts and maximize the number of patients diagnosed. Efforts could include:
Continuing education opportunities: webinars offering CMEs
A coordinated effort to have AGS added to lists of differentials, where appropriate: IBS, IBD, cyclical vomiting syndrome, gallbladder disease, arthritis, chronic urticaria, etc.
Distribution of information via EMR updates and health alerts
Work with medical schools to update curricula to include AGS
2.1.2 Raise awareness among high-risk and underserved patient populations
AGS prevalence rates are significantly higher among groups with high tick exposure, such as foresters, hunters, hikers, etc.
Other at-risk groups include farmers, the military, park rangers, people working in landscape maintenance, campers, birders, and others whose occupations and hobbies bring them into regular contact with ticks.
Certain underserved populations, including Black and Latino populations are diagnosed at significantly lower rates than Caucasian populations.
2.2 Create a Tick-Borne Disease Immunology Center of Excellence (TBD-ICE)
Existing centers of excellence focus on acute, infectious disease. We need a federally funded center in a region of high alpha-gal prevalence focused on the immunological dimensions of conditions associated with tick bites, including alpha-gal syndrome, mast cell syndromes, atherosclerosis, and post-infectious syndromes. The center could direct and coordinate multi-institutional research efforts and provide support services for affected populations and their providers. Activities could include the following:
2.2.1 Research: Alpha-gal Syndrome
Define the cellular and molecular mechanisms that drive AGS and explore their relevance to allergy in general.
Elucidate the natural history of AGS, including:
The role of ticks, other parasites, and the microorganisms they host, in the pathogenesis of AGS
The full range of AGS’s presentation, including atypical symptomatology and phenotypes, with a special focus on the GI variant of AGS and AGS-related rheumatological issues
Explore mechanisms that drive the spontaneous remission of AGS
Define the full range of exposures to alpha-gal and their implications
Examples of under-studied exposures include aerosolized lipids generated from cooking meat, fish eggs, mosquito saliva, Aspergillus sp., Saccharomyces sp., Borrelia sp., etc.
Identify microbiome markers and other factors that may predispose people to the development of AGS
Collect and analyze epidemiological data on AGS
Determine the true prevalence of AGS in the U.S.
Explore the global burden of AGS
Develop improved diagnostic management tools and protocols
Develop therapies for AGS
Drugs and biologics
Therapies to interrupt the pathogenesis of AGS after tick bites
Support development of alpha-gal-safe alternative products, including:
Foods, such as the GalSafe pig and cell-based dairy and meats
Drugs and medical products, such as bioprosthetic valves and implants, heparin, gelatin/collagen, thyroid medications, pancreatic enzymes, vaccines, etc. using materials derived from alpha-gal-knockout species or by other means
2.2.2 Research: Beyond AGS
Identify and define the role of ticks, tick-borne pathogens/endosymbionts, and possibly other ecto- and endo- parasites in the development of allergy beyond AGS
Define the role of immune responses to alpha-gal, and possibly other ecto- and endoparasite-bite driven immune responses, in the development of chronic and autoimmune disease processes such as:
Mast cell activation
GI issues, like IBS
Post-infectious syndromes, such as chronic Lyme disease
Seek to identify other, overlooked allergic and non-allergic immune responses to glycans that may be contributing to chronic illnesses
Further elucidate the role of both allergic and non-allergic immune responses to alpha-gal as a barrier to xenotransplantation
Determine the role of alpha-gal immune responses in early valve failure and the rejection of other bioprosthetic implants and materials
2.2.3 National Database of Alpha-gal-Safe Drugs and Medical Products
Medical care is fraught with dangers for people with AGS, especially those who are highly reactive to alpha-gal.
It can take weeks of research to prepare for surgery, during which the manufacturers of each product that may be used perioperatively are contacted. It is not just the obvious products that may contain alpha-gal, but also easily overlooked items, such as sutures, bandages, lubricants, intravenously delivered fluids, and parenteral nutrition.
Medical emergencies, which don’t allow for research, are Russian roulette.
A database could be modeled on hospital-based formularies, such as the one at Duke.
The database should be publicly accessible, similar to DailyMed.
An associated hotline could be modeled on the Robert Wood Johnson Drug Information Hotline, but staffed by paid employees, rather than volunteer pharmacy students, and operated 24/7.
2.2.4 Alpha-gal Syndrome Patient and Provider Support Center
Alpha-gal syndrome is an exceptionally difficult condition to navigate, because of the severity of our reactions; the ubiquitous presence of alpha-gal in foods, medical, personal care and household products; and comorbidities.
Common comorbidities include MCAS, another exceptionally difficult syndrome to manage, as well as other conditions, such as IBS and arthritis.
Most people with AGS receive little support from their physicians in navigating the complexities of AGS, as most know almost nothing about it.
Many physicians are eager to help patients but lack knowledge and access to expert-vetted informational and other resources.
The center could offer:
Continuing education opportunities: webinars, conferences, access to grand rounds presentations, etc.
Access to informational resources: diagnostic and management guidelines, specialty-specific expert opinion, etc.
Guidance on safety protocols for emergency care, surgery, the administration of vaccines (graded dosing), etc.
For both providers and patients:
Access to alpha-gal literate nutritionists and patient advocates
Alpha-gal informational resources: an informational website, moderated online support forums, brochures, guides for navigating ER visits and surgery, shopping and dining-out guides, etc.
A searchable personal care and household product database, utilizing the SmartLabel database and modeled on a bare-bones version of the Environmental Working Group’s Skin Deep database
Step-by-step guidance for determining tolerance levels and identifying sources of ongoing reactions
Access to tick bite avoidance resources, in partnership with existing tick-focused non-profits
For example, providing data to support the inclusion of alpha-gal among allergies covered by FALCPA
Sandra Picard, Founder of The Missing Peace for Lyme and nonprofit RAISE Hope For Lyme
I am Sandra J Picard FNPBC (Patient and Provider)
Above & Beyond Wellness for US, LLC “What We Want”, “What Works”, “Who Offers What”
Founder of The Missing Peace for Lyme to RAISE Hope for Lyme & TBD(Research, Awareness, Integration, Support, Education)
My childhood was magical. I grew up in the White Mountains of NH. We would play in the woods and fields, ride bikes and horses during the day and play man hunt at night. We were rarely indoors. It continued throughout highschool with seasonal sports, hunting, fishing, and camping.
My [REDACTED] who was 11 yrs younger than I developed Juvenile Rheumatoid Arthritis and was in chronic pain preventing him from enjoying sports and activities although he had a maple syrup and lawn mowing “business” at an early age..
45 years ago I left my home to pursue my dream of becoming a veterinarian. Strangers became friends and friends became FAMILY. One friend and I would sit on the steps of York Hall and talk into the wee hours of the morning. He would LISTEN to my hopes and dreams without judgment or ridicule. 7 years later I married the love of my life and career. I had a severe reaction to mixed grasses, horses and cats even though I had worked with veterinarians throughout my high school and college years up and was advised to find another career. As a Family Nurse Practitioner I could devote equal time to my FAMILY at home and work. I was raised that FAMILY ALWAYS comes first and it was going to be no different in my new FAMILY.
In 1988 my [REDACTED] had “An Acute Psychotic Episode” after being sleep deprived from working on a big computer project and returning from Japan. There was no history of mental illness in our family, he was valedictorian of his class, had moved quickly up the corporate ladder quickly at such a young age and had an 18 month old son. Surely with some rest and decreased stress he would be fine. His doctors could give him no explanation and a psychiatrist put him on several medications including Haldol and Prozac. When he was given no HOPE of returning to normal he thought his family would be better off without him and he took his own life. I could not imagine how anyone who loved his family and family loved him so much could be so hopeless. My colleagues had no explanation other than schizophrenia that often is seen in males at his age.
I had a wonderful advisor in post grad and my preceptor/employer was way ahead of his time as a Holistic MD. He gave me as much time as was needed to LISTEN to my patients and get the whole story! “If you listen to your patient long enough they will tell you what the problem is, if you listen longer they will tell you how to fix it!” 10 years ago I left the corporate medical system to put CARE back into Healthcare and founded The Missing Peace for Women HealthCARE Family when I was told there was no money in wellness and the number of patients seen in a day was the focus. I did not become a Nurse Practitioner for the money. It is FAMILY that matters most! The majority of women who came through the door had some history of abuse..physical, sexual and EMOTIONAL. The Missing Peace gave them a safe place where they could be heard and validated. They could share their story with others who could understand and help one another!
Above & Beyond Wellness for Women was put together as the connecting point for “What Women Want”, “What Works” and “Who Offers What” where the HEART (Health, Emotional, Activity, Resources, Therapies) of Wellness was under one roof. The innovative, integrative vision of collaboration vs competition was born. Providers with their own businesses would work as a TEAM with the patient in control. (ie. nutritionist, mental health, physical therapy, yoga, fitness, massage, and groups working with their ophthalmologist, Dentists, Chiropractors, Naturopaths, Acupuncturists, Family and Community of their choice)
Above & Beyond Wellness for Women quickly became Wellness for US due to the Skyrocketing, devastating effects that Lyme and Tickborne Diseases was having on the FAMILY (including my own) Practically everyone I saw was having similar symptoms of Extreme Fatigue, Joint Pain, Myalgias, Sweats, Air Hunger, Vision Disturbances and COGNITIVE Impairments. RARELY had anyone recalled a tick bite! Initially insurance was paying for Lyme testing sent to Igenex Labs however the laboratory I was using questioned why everyone was coming back positive and stopped payment of the tests. Now my patients were unable to pay for reliable testing to prove to the MANY other providers they had seen who told them they did not have Lyme and would refer them for “Hormonal” or “Mental Health” therapy.
In 2014, after suffering from symptoms myself starting in 2008, I had a related injury that literally left me single handed. It was then that I went to ILADS and learned testing and treatments that worked yet were not covered by insurance companies. My patients that largely consisted of women and children were not able to pay for the care they needed and deserved! I could not continue to give the 24/7 CARE they needed and charge for a 15-20 minute office visit for what insurance would pay for. I had already lost hundreds of thousands of dollars treating others and having to go out of state to get CARE for myself. This has had a devastating effect on our FAMILY.
I founded The Missing Peace for Lyme in 2017, a nonprofit to cover the testing and treatment that worked and insurance would not pay for and to pay for a healing center for women and children. It was recommended I change the name so that I could receive a salary as The Missing Peace for Women could be confused with the nonprofit so in 2020 we changed the name and the board was to open a bank account to RAISE Hope for Lyme & TBD (Research, Awareness,Integration, Support, Education).
In January of 2020 I had Covid that triggered my Lyme symptoms. A few months later we met with Susan Collins to inform her of the need for studies for testing and treatments for Lyme not covered by insurance. We HAVE the tests and treatments but no one is listening. I had seen an increase in a biomarker for INFLAMMATION and risk of Heart Attacks and Strokes with results over 4,000 in young patients (nl <600) with Lyme. NH commissioned a study for testing and I’d hoped ME and NH could work together with Me-Dartmouth and Nami as well as teach other NPs and Practitioners! It is too late for many of us who have lost everything including HOPE & FAMILY. My Friend who once listened for hours has become the stranger and my mother is afraid of me because I had wanted to donate my Dad’s brain to help others end the suffering!