TBDWG July 8, 2020 - Written Public Comment

This webpage displays the written comments received by the Tick-Borne Disease Working Group for the July 2020 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.

Anonymous 1

I am a Registered Certified School Nurse. I am literally watching pediatricians, physicians, psychiatrists, rheumatologists and infectious disease physicians misdiagnosis children that were actually suffering from chronic, persistent tickborne infections. Children are being set up for a lifetime of chronic health conditions right in front of my eyes. Physicians are not even screening symptomatic children for Lyme disease and when they do and the test is positive, they dismiss the results of the diagnostic test and deny appropriate treatment.

When I lost my brother due to pure Lyme disease ignorance within the medical community, I began to do my own research. My brother was training for a triathlon in Pennsylvania until he was stricken by multiple tick borne infections that confined him to a wheelchair, robbed him of his voice and eventually lead him to his death. On his death certificate , “Chronic Lyme disease" is listed as a cause of his death yet was never considered when he was alive. Fast forward one year, I pulled a tick from my abdomen, it had been there less than 24 hours, I thought, “ I am a nurse, I know what to look for.” About three weeks later, I developed flu like symptoms, joint pain, visual floaters as well as other Lyme symptoms. I immediately knew I was infected with the same illness that took the life of my brother. Even given my history of a recent tick bite and newly developed symptoms, I too was denied proper medical treatment because of a negative CDC test. Thankfully, I knew what to do and frankly my brother saved my life.

Today, I am now able to recognize all the children that have been misdiagnosed with ADHD, Mood Disorders, Seizures, Growing Pains, Anxiety, Reynauds-like Phenomena and Autism Spectrum disorder. I began advocating for these children that were wronged by the medical community. I contacted parents, two children ages 6 and 7 were both classified “ Autistic” but after reviewing their medical records, I was taken back. The six year old with a history of high intermittent fevers, migrating joint pain, headaches and neurological decline is now correctly diagnosed with Chronic Lyme Disease, TBRF, Bartonella, Babesia and Post Infectious Auto Immune Encephalitis. The seven year old with a history of cyclic vomiting, alopecia and sudden neurological regression tested CDC positive for Lyme disease. He was not only positive for an active Lyme infection but was also IGG positive. He was started on antibiotics by an ILADS trained physician but as the bacteria died, toxins increased in his brain causing severe psychiatric symptoms. He began eating feces and became aggressive. The parents went for a second opinion to a pediatric infectious disease physician who advised stopping the antibiotics and told the parents three weeks was all that was needed. How do these IDSA physicians sleep at night? A third child also with a medical history of “Autism” tested positive for tick borne relapsing fever and was only prescribed a short course of antibiotics and deemed cured. When did physicians start playing God? Who decides a child with a diagnosis of Autism is not also fighting TBD which manifests itself similarly to Autism?

Another 9 year old complains of migrating joint pain and blue discoloration of her hands, she was diagnosed with “Reynauds-Like” Phenomena and Flat Feet.” She was given a script for orthotics and physical therapy. Her rheumatologist had the audacity to send a note to school stating "this child does not have Lyme disease", (based on an negative ELISA). A six year old with a history of leg pains and limping was diagnosed with growing pains for over a year until his recent diagnosis of Lyme disease and Bartonella. I could name so many more examples of medical negligence but I am praying you get the picture.

It is NO coincidence that New Jersey has the highest cases of Autism and Lyme. These precious children are not even screened or tested for Lyme disease through CDC standards, not that it would make a difference! This alone is criminal! We have no test for Autism and we have no reliable test for Lyme disease so how many children were actually misdiagnosed with Autism? With the recent death of our beloved, Dr. Neil Spector, it is quite obvious the CDC, IDSA and the NIH should all be held accountable for Dr. Spector’s death, my brother’s death and for the suffering of these children mentioned above as well as their families. Enough is enough!!!

Are these physicians turning their backs on our children for fear of consequences from the CDC and insurance companies? Are they lying to parents to protect their licenses or are they blatantly ignoring a silent epidemic? I have parents calling me in tears stating their physician does not believe their child has Lyme disease, parents being told there is nothing wrong with their child, that it is all in their head, parents being told their child who can’t walk is faking etc.

Members of the TBDWG, you have the opportunity to save these children and the millions more that will be misdiagnosed. Bartonella is plaguing the brains of our youth, the suicide rates are skyrocketing, the “cutting behaviors” are off the chart yet this horrific tickborne infection is being ignored. We have no reliable test! We have no cure!


Anonymous 2

This is a real situation with real pain and suffering. My daughter, 33 yrs old has Chronic Lyme Disease.  Over the years, she (and we) have seen over 30 doctors with no diagnosis except that she needs to see a mental health provider.   She had been given the CDC  “approved” tests for Lyme multiple times, all negative.  It finally was diagnosed by a Holistic doctor because everyone else were following CDC guidelines.

Fast forward several years of treatments, flare ups and Co infections, she still battles this horrific disease. She has good insurance but most of her treatments are not covered.  Despite her husband having an excellent job ( she is unable to work), they cannot afford her treatments. That’s where my husband and I come in. We spend roughly $12,000 to $15,000 a year for her health care instead of saving for our retirement. She also has a 5 yr old son, who, we believe, also has Lyme from her.

This disease is growing exponentially in this country. It is going to be bigger than HIV. Lyme is in all 50 states and we still have doctors that tell us “it’s not in this area”. Until our government takes this seriously, with research, education and funding we are in real trouble. If you think Covid19 is bad, this disease is much worse overtime and will affect millions more. Wake up!!

This is a life sentence of suffering.  Arthritis, bone pain, brain fog, parasites, Lyme carditis, and the list goes on...

Please take this seriously, fund the programs and research. We are counting on you.


Anonymous 3

Dear Tick-Borne Disease Working Group,

I got infected with Lyme, Babesiosis, and Anaplasmosis while visiting Maine in August, 2015. Doctors in San Diego, California refused to consider that I had tick-borne infections because my initial blood tests were equivocal based on CDC standards even though a clinical diagnosis could have been made based on my symptoms. My symptoms progressed over time until I had two pulmonary embolisms in 2019 that nearly killed me. After the second pulmonary embolism, I started to see a Lyme specialist in another city. Subsequent positive blood tests confirmed that I had Lyme, Babesiosis, and Anaplasmosis. I have been on antibiotics for six months, and I am starting to feel better.

I have learned several things based on my experience with tick-borne infections. Doctors need training to make clinical diagnoses of tick-borne infections. Tests for tick-borne infections are inadequate. Long-term antibiotics are required to treat persistent tick-borne infections.

Thank you,
San Diego, California

Anonymous 4

Chronic Lyme disease and co infections have devastated and bankrupted my family.

My young daughter was misdiagnosed and suffered for five years going from doctor to doctor hospital to hospital. When we finally figured it out she was cdc postive For Lyme, babesia, bartonella and she had mycoplasma. She had also developed heart block. She has missed nearly two years of school. She was an accomplished gymnast but became depressed and anxious ( symptoms of bartonella) she talked about wanted to die every day at 13 years old. Finally with correct treatment for more then two her symptoms subsided. She has been pain free for a few months and completely normal mentally for a year now with treatment.

She is not the only person it my family that has Lyme and co infections. We all have it!

Another son had a ablation on his heart before we realized it was caused by an unchecked tick born reoccurring fever infection from a tick bite. Another son was so fatigued from his Lyme and bartonella infections that he pretty much slept thru all of HS. He is still very sick but after treating my daughter I have no money left to treat him.

Lyme must be acknowledged and Lyme families need help. We here and we are suffering. I am barely hanging on. I am sick myself but I don’t treat myself because I can’t afford it. Lyme specialists are out of pocket and regular doctors have been no help. Please see us. Please help us.

My eight year old has this too and I have not treated her yet. She diagnosed but I have been triaging my kids treating who is sickest first since it’s 100 percent out of pocket.

Please help.

Anonymous 5

I live in the southern KM State Forest of WI. From 2008 to 2020 I've had 6 tick-borne infections. Each time I was treated with varying amounts of doxycycline depending on the doctor I saw at the time. I have tick-borne co-infections also and developed late-stage Lyme disease. For years I suffered trying to get help from doctors, psychiatrists and insurance companies who would not acknowledge late stage neurological Lyme even though I had clinical documentation of each and every tick bite.

I was a high-functioning business manager for 20 years but I've been unable to work and on SSDI since 2012. Seeking wellness, I've spent a fortune on unsuccessful therapies not covered by insurance. There is something seriously wrong with the CDCs treatment guidelines for tick-borne illnesses and LATE STAGE LYME. It's time to change this.

Thank you,
Plamyra, WI

Anonymous 6

Dear Tick-borne Disease Working Group (TBDWG),

I have been affected and infected with tick-borne diseases (TBD) since 1993 and was not diagnosed until 1999. This was due to physician over-reliance on the standard two-tier testing. I was informed multiple times that my testing was negative and therefore I was not infected with Lyme disease. This negated the many debilitating symptoms that I had and left me undiagnosed. None of the physicians in the state of Connecticut were even testing for babesiosis which I was also infected with. Once I was diagnosed in 1999, I knew what my older son who was 10 years old at the time had been suffering with for six years. His Lyme disease tests had been negative, so he was never treated. This is how patients become chronic. It is ridiculous to think that everyone gets the rash and tests positive as the Infectious Disease Society of America and the Centers for Disease Control and Prevention (CDC) pontificates. Due to this pontification people become chronic.

Once my son and I were diagnosed my daughter became very sick. I took her to her pediatrician and was told it was a summer flu, ear infection and the malar rash on her face needed to be assessed by a dermatologist. I was also told I had Lyme anxiety, which is a standard party line for the IDSA promoters (Eugene Shapiro). The next day my daughter had seven erythema migrans rashes (disseminated Lyme disease). I had informed the pediatrician that I had removed a tick from her 33 days prior. I then asked him what would have happened had my daughter not had the rashes and his brilliant response was “I don’t know.”

My third child became ill the following month and the same pediatrician would not consider Lyme disease, my son had three small ring like rashes on his thigh and a high fever, he was two and a half years old. I took him to a pediatric tick-borne disease specialist, and he was positive for Lyme disease. What would have happened to my son had he been allowed to go untreated? This is how children become chronic!

After my entire family of five were all diagnosed with Lyme disease, I called the Connecticut Department of Public Health (CT, DPH) and the CDC in Fort Collins to alert them to my family’s situation, I was told nothing more than to use personal protection. I had never even heard of personal protection measures in Connecticut, the state where it all began. Neither had my neighbors, many who were also suffering from tick-borne diseases. We found no help from our local doctors or local hospital in [redacted], Connecticut. Doctors did not want to test and many of us were disregarded. We live in a highly Lyme endemic area where everyone knows someone who has Lyme disease and too many are chronically ill. Many of us with children were asked to leave our pediatric practices after our doctors found out that we were going to a specialist who was more knowledgeable about tick-borne diseases. People were leaving the state to find care. The CT DPH was investigating doctors who treated Lyme. One of the doctors who testified against my pediatrician who treated my children’s chronic Lyme was Dr. Eugene Shapiro. He is a member of the TBDWG, and a petition has been waged against him to have him removed. This petition was blatantly ignored by the TBDWG. We must ask why was this allowed?

My story is just one of the stories of families in Connecticut and worldwide. So many people are becoming infected every year, and nothing is being done to halt the spread. Reliance on the cases that are reported to CDC from CT are negligently in error and give a false impression to the people of the state, the media, legislators and the medical profession. (CT DPH 1991-2018) As tick infection rates are rising the number of cases is dropping according to the CT DPH. How can that be? It is a paper drop that is not explained. People need to be given accurate information in order to make an informed decision of their risk. If CT would have not dropped mandatory laboratory reporting in 2002 what would our numbers have looked like in 2018. CT DPH did reinstate laboratory reporting but not with the number of labs that were involved in 2002. It is no more apples to apples.

There is no state-wide education program in CT to inform and educate the people about Lyme and tick-borne diseases. There was nothing in 1999 and there is nothing now. The Epidemiology Department of the Connecticut Department of Public Health has received millions to study Lyme disease yet none of this has ever been sustained to protect the people of Connecticut. If people do not know about the early signs and symptoms and prevention measures, they will not take appropriate measures to protect themselves and not seek care early. This is how chronic Lyme disease happens!!

The TBDWG was to include the voice of the people and what is truly happening in the communities across the nation. This group has been hijacked by an agenda that is detrimental and deadly to the Lyme community now and to future generations. Chronic Lyme must be included and not be blindsided by parties that are involved in the suppression of the people who have the experience to make a difference working with our government.

Lyme disease cases 1991-2018. Connecticut Department of Public Health. https://portal.ct.gov/-/media/DPH/EEIP/LD-by-Surv-Method-1991-2018.pdf

Thank you for your attention to this matter.


Anonymous 7

I am the President of a non-profit organization formed to bring awareness, support and education to those suffering with Lyme disease and other tick-borne diseases. I am also a mother who had to watch her child suffer through years of illness with no answers.

11 years ago, our family began a journey battling chronic, debilitating Lyme disease. At that time, we had no idea what we were looking at. Our 12 year old daughter became ill. She had been bitten by a tick, but her physician didn't think there was anything to worry about, so we were advised to watch and wait. Over the next several years, we would seek medical care from many physicians, cardiologists, neurologists, electrophysiologists, genetic specialists, holistic practitioners. She went through many tests, procedures, a spinal tap, biopsies, diagnostic work ups, evaluations, emergency room visits, and each time we were left without answers. As each day and week and year passed, she became increasingly more ill. The mysterious illness affected her heart. She began having seizures. She was pulled from school. She was so sick she could hardly care for herself. We felt she was dying, but no answers were found.

After years of searching, we met Dr. [redacted] in New Haven, CT. Dr. [redacted] is a pediatric LLMD, and he diagnosed our child with Lyme disease and multiple co-infections. Her treatment would be long, and difficult, but finally we had answers and we began to see her getting better.

Today, our beautiful daughter is a young adult, she missed her childhood and teen years due to illness. She is strong, a warrior. She has persevered when many would have given up. But if those physicians treating her all through the years would've been aware of chronic Lyme disease, if they would have had recommendations from the CDC and other agencies for testing, diagnosis and treatment options, she would not have suffered so.

We have had to be very persistent in seeking answers, never giving up as the medical community ignored her illness. We do not want anyone to ever go through what we have endured as a family. Chronic illness is devastating. Financially. Emotionally. Physically.

We are asking for you to acknowledge the existence of chronic Lyme disease. Our families and hundreds and thousands of patients who are suffering need you to bring hope and answers. For those who suffer an acute case of Lyme disease, treatment is effective and long-term illness is avoided. But for so many, this is not the case and their lives are forever changed. The sickness is enough to destroy, but the realization that they are not recognized or acknowledged is hopelessly discouraging and treatment is often impossible to find.

Chronic Lyme disease is real. Please help those who suffer to find help and answers.


Anonymous 8

To Whom It May Concern:

I'm writing to ask for your help as my daughter battles what we have been told is Lyme disease. My daughter is a beautiful, strong, 33-year-old wife and mother of two young daughters. They live in Oklahoma. I am her mother and I live in northern Kentucky. During our last visit together in December, 2019, she shared with me that she had been having some strange health issues, including muscle ache, extreme fatigue, burning, itching skin, and some discharge matter coming out of various parts of her body. Since December, her condition has gotten much worse. There have been days when she cannot get out of bed. She has painful lesions throughout her body and is uncomfortable most days. She had been to her primary care doctor, to her dermatologist and then to her OB/GYN looking for answers. The OB/GYN doctor personally had suffered from Lupus and was the first doctor to not dismiss her symptoms. She referred her to a specialist based in the DC area. She is now doing telemedicine appointments with a nurse practitioner who is charging her hundreds of out-of-pocket dollars for what I feel should be appointments that should be covered by medical insurance. The medicine being prescribed to her is some traditional long-term antibiotic therapy along with some other medicine not covered by insurance. The medicine is certainly helping her function 50% or more, although I've read that there may be long-term effects if she remains on antibiotics for a long period of time. 

What can be done to assist my daughter and other patients battling this horrible disease? Why can't her primary care doctor or dermatologist or neurologist or some other authorized medical professional diagnose and treat her? Why can't medical insurance cover what she needs to function? 

Please let me know if there are steps she or we could do to resolve this troubling situation.


Anonymous 9

Until two of our children were affected by Lyme Disease (and probable co-infections), we had no idea the devastating effect of this disease. I want to share their stories, which are like the stories of thousands upon thousands of other people here in the United States. 

Our 29-year-old daughter has been ill now for three years. For much of that time, she has been bed-ridden, or unable to do any but the most basic household tasks. She has three young children, so I (her mother) spent many months helping to care for her and my grandchildren. Her symptoms erupted suddenly, after the birth of her last child, and were so severe that we thought she was having a heart attack or stroke. She had numbness on one side of her body, heaviness in her limbs, shooting pains in her muscles, and difficulty raising her head. The only abnormality found by medical tests was that she had developed fluid around her heart and lungs. Doctors and specialists couldn’t tell her why, and nobody could explain her symptoms. She gradually improved over the next few months, but had a relapse after catching a bad cold. This time, the Lyme symptoms did not recede. Instead, they intensified. She still had the fluid around her lungs and heart, and medical doctors had no answers. They would run tests, and then send her home, where she continued to suffer a complete physical collapse. It wasn’t until a year after the onset of her symptoms that she was finally diagnosed with Lyme Disease by a doctor in Virginia. Unfortunately, the disease by then had become intractable. The doctor who diagnosed her started her on long-term antibiotic therapy, which is controversial, but for her proved a lifeline. The drugs’ necessity was obvious because when she went off of them too soon, she immediately “crashed,” and had to start her recovery over again. At some point, she began to develop a sensitivity to the antibiotics, so had to stop them. She continues to have moderate to severe symptoms, and has decided to try “bee venom therapy” on her own, simply because there is nothing else out there for her. This disease has ravaged her body, her life, and her career. 

Sadly, our 23-year-old son has also developed Lyme Disease (and probable bartonella co-infection), despite the fact that he and his sister have not lived in the same house for more than 10 years. He began to suffer symptoms two years after she did, while he was living in Idaho, while his sister developed her symptoms while living in New Mexico. Both grew up in upstate New York, and would visit in Virginia, so it is possible that they were infected in either of those states. (However, it has become apparent that Lyme is now present in the West as well as the East of the United States.) Our son’s symptoms began a couple years ago with brain fog, difficulty focusing, and fatigue. These symptoms progressed until he experienced a “crash,” with extreme nausea, muscle pain, headaches, and profound fatigue that often prevented him from getting out of bed. Like his sister, he found no answers from the medical establishment. A colonoscopy and a scope into his stomach showed no inflammation. Yet my son lay in bed day after day, unable to eat, feeling as though he were dying. He went to the E.R., and was sent home. As with my daughter, a doctor finally diagnosed Lyme with Bartonella co-infection. Our son has also been on long-term antibiotics, which have helped. Six months after his “crash,” he is gradually improving, although he is still an invalid. He has tried twice to go off the antibiotics, but each time relapses. Before the onset of Lyme Disease, he had been working full time as a carpenter’s helper, and had started an MBA program. Due to his illness, he has had to quit work and withdraw from school. He has lost over forty pounds. 

With these devastating experiences in our family, it is hard for me to believe that, “There are currently no FDA-approved or commonly agreed-upon treatments for patients who have undergone a recommended [short-term] course of antibiotics for Lyme disease but who continue to have persistent symptoms.” (Alison Rebman and John N. Aucott, “Post-treatment Lyme Disease as a Model for Persistent Symptoms in Lyme Disease,” 25 February 2020 https://doi.org/10.3389/fmed.2020.00057)

It is equally hard to believe that “while Lyme disease has been a nationally notifiable disease in the United States since 1991, the CDC does not track disease outcomes or cases of persistent symptoms.” (Rebman and Aucott, from Centers for Disease Control and Prevention. Lyme Disease Surveillance and Available Data. Available online at: https://www.cdc.gov/lyme/stats/survfaq.html (accessed December 3, 2019).)

How is this possible?! I don’t know. But we have experienced firsthand that most doctors have NO knowledge of and NO treatment for this terrible scourge, which affects over 300,000 Americans each year. How many more people have to live through this nightmare with almost complete lack of understanding and support from the medical establishment? 

I sincerely hope that the Tick-Borne Disease Study Group will make recommendations to HHS and Congress that will change the status quo. More research and better treatments are urgently and desperately needed. 

Anonymous 10

I have been suffering with Lyme Disease and Babesia for almost 9 years.  I live in the state of Mississippi, where most doctors don’t believe that Lyme Disease existS here, probably because nobody is testing ticks to find out.  My Lyme Disease is confirmed by IGENIX lab test and the Babesia is a clinical diagnosis made by a Lyme Literate MD (who has treated almost 1,000 Lyme patients).  It was 5 years before I was correctly diagnosed.  I spent 2 years on multiple antibiotics, including 8 months on IV antibiotic.  I took between 3-4 antibiotics at a time, as well as Malarone for the Babesia.  In October of 2018 I went to see a physician in California and she ran a test that determined I was also mold toxic, most probably from clean up work I did after Katrina.  I took pain medicine for 2 years, but currently I am just dealing with the pain I have and no longer taking pain medicine. At the end of the two years of antibiotics I was much better, but I had plateaued in my recovery.  I made a decision to begin Dr Ross’s herbal treatment for Lyme disease and stop the antibiotics all together in January 2019.  I additionally began taking herbals for detoxing from the mold.  I began to decline again somewhere in late summer 2019, with my cognitive function slowly getting worse.  In September I tried to kill myself.  By January 2020 I was in a full blown relapse and was no longer able to work. I resigned my job of 27 years because I was no longer able to physically, as well as cognitively, perform my job.  We put our house on the market and bought a cheaper house that we could afford on just my husband’s salary.  I took 90 days of Doxycycline around the holidays in 2019 and saw little improvement.  I started having my Babesia symptoms again and was restarted on the Malarone, and also was given Alinia in January 2020.  It has been with these two medicines that I am beginning to have an occasional decent day.  

Tick born illnesses are not for the weak, poor or undetermined individuals.  When I tried to kill myself the ER MD told my husband that Chronic Lyme Disease did not exist...what the #$@&%!  I have been suffering for 9 years with this stuff.  Why are doctors not being educated with all the new scientific evidence that people like me are not lying, we really are still sick.  Please make Lyme disease research a priority, and insurances companies required to pay for treatment.  I for one will be grateful should we make progress in our defective testing abilities, the ineffective treatment options for long term Lyme, and Educate MDs that chronic Lyme disease does exist, of if they insist call it post treatment Lyme disease.  Thanks!!

Anonymous 11

I have been sick from tick borne disease for the last five years and continue to fight every day to stay functional enough to work and take care of my children. Because I did not present with the signature bulls eye rash, the diagnosis itself took 2 years, which allowed my disease to advance and evade traditional treatment once finally diagnosed. Fifteen doctors and specialists, countless appointments and copays, consistently hearing I was anxiety ridden and "just tired" as I became more and more debilitated. I am lucky to be of means that I was able to continue to search for what was happening to me, as so many others are not, but it should never have had to be that way - especially in an area of the country where ticks are so endemic. Testing must be improved; doctors must be educated and the public should be made aware of the potential symptoms of these diseases so many others are not made to suffer. 

The CDC website essentially says the best way to treat Lyme disease is to not get it in the first place - this is unacceptable. The gold standard in the world for research into infectious diseases should not throw up their hands because there is not an easy solution to this silent epidemic. We need research into treatments - real research where those who are suffering are not excluded from the studies because they do not meet antiquated standards for "having tick borne diseases".  We need public health outreach and education for doctors so testing for tick borne diseases in spring through fall becomes as commonplace as testing for the flu in the winter. Mostly we need to be believed, that even if the bacteria is no longer in our bodies according to current tests that something has occurred as a result of a tick bite that has completely destroyed our health.

I am grateful this working group has been put together and I have been encouraged seeing so many voices being heard in prior meetings. I have hope that positive steps will be taken to help so many of us that are currently suffering and prevent others from suffering the same fate. We are counting on you. Thank you.

Washington, DC

Anonymous 12

I was diagnosed with Lyme when I was in high school. I am now 32 and still fighting for stability in my health. I am one of the lucky ones because I was diagnosed with a blood test (that's not the case for many), and my parents have been able to support me financially and pay for doctors and treatments that are not covered by insurance. I initially went through insurance and followed the guidelines for treatment, but that wasn't enough. I continued to suffer and therefore had to continue to fight for my health without help from insurance. On top of living with a confusing and debilitating illness, my inability to support myself paired with the financial burden my medical bills have put on my parents weighs heavily on me. My experience has been that (just like any other illness) stress and the severity of symptoms are correlated. And living in a world where the systems and professionals (informed and governed by the systems) who are supposed to help me instead deny the existence of my disease is extremely stressful and not condusive to healing. Those of us with chronic Lyme should be focused on fighting the disease, not fighting for validation and resources. I am not a scientist, so I don't have a medical argument to prove to you that chronic Lyme exists, but what I do have is 17 years of lived experience that says it does. The last 17 years of my life have been a roller coaster that basically looks like this: I am sick to the point that I am suffering and have to put all of my time and energy into healing, I receive treatment for a couple of years (spending exorbitant amounts of money), I find some stability and start living my life again, only to experience a life stressor, which leads to a relapse of symptoms, and then I start the cycle all over again. It's disheartening and exhausting. 

Instead of denying the existence of chronic Lyme, the government should embrace the reality of our experience and helped to support patients. If the government doesn't embrace chronic Lyme for what it is, how are we ever supposed to find a cure? We need the government to admit that chronic Lyme exists because without that admission, we cannot get the care we need and support from insurance. I have been a walking science experiment for as long as I can remember and had my reality denied by the very people and systems who are supposed to help me.  I even had to have the bandages for my PICC line (used to administer IV antibiotics) changed in someone's kitchen (putting me at a higher risk for infection) because I couldn't get proper care in the state where I was attending college. And yet, I'll repeat it: I am one of the lucky ones. My having to fight for appropriate care while living with a chronic illness been traumatizing. My experience has led me to lose faith in the government and the medical system. It shouldn't be this challenging and expensive to get the care we need. The only reason I am well enough to write this is I have had the financial resources that have allowed me to work around the system, utilize a variety of unconventional treatments, and focus on my healing (a privilege not afforded to most). Yet, I still live in fear of future relapses and associated financial strain. 

We need your help. Please do the right thing by officially acknowledging chronic (or persistent) Lyme.


Anonymous 13

I am writing to express my concerns. 

This is such a shock to see that some Agencies on the Federal HHS-Tick-Borne Disease Working Group are refusing to address persistent Lyme. I have PERSISTENT/CHRONIC LYME DISEASE. It is real. It exists. 

I am a Federal Government employee -Wildland Firefighter. I’ve been lots of places for my job and for personal life. I have been bitten in the past by ticks. I have PERSISTENT/ CHRONIC LYME DISEASE. It has impacted my life, my health and altered my mental status. This is a persistent infection.  I have suffered with the persistent debilitating infections that our government is still refusing to address.  Open your mind to science. 

Poncha Springs, Colorado

Anonymous 14

Our Lyme journey as a family started in 2001 when my husband was diagnosed with Lyme and Co-infections by an Infectious Disease doctor at Rhode Island Hospital. Eventually, our son, daughter and myself would follow suit. Our son ended up missing all of middle and high school and came close to losing his life. My late diagnosis lead to hearing loss and demyelinating disease of the central nervous system. It is hard to fathom that after these many years and after numerous published studies that documents persistent, chronic Lyme Disease, and patient reports of long term persistent symptoms and severe disability, that we are still having this conversation. Patients remain isolated by a health care community that does not believe them while thousands more patients become chronically ill with each passing year. This is heartbreaking. We simply need physicians who understand, validate us, and treat. Why does this have to be so hard? How many more people have to needlessly suffer and die? Please see us and heal us in time with early diagnosis and treatment. Physicians are human and do not fully understand the testing and treatment. Help them understand. Do not be dogmatic, be open minded. Physicians have to understand that the controversy lies in the testing and not everyone will have a classic bullseye rash. Think outside of the box, do not use the test as the holy grail. The time is changing. We may need to leave a generation of physicians out of the loop, but things are changing. Please help facilitate this change. The way to deal with resistance to change is by facilitating communication and understanding between people with different points of view. Change needs to happen now. You are all in a position to make this happen. Please do not miss this opportunity to help so many people who are needlessly suffering. As Oliver Wendell Holmes said, “A mind that is stretched by a new experience can never go back to its old dimensions.”

Lyme Disease Association, RI Chair

An Anonymous Mom

I am a parent of a child affected by Lyme, Bartonella and Babesia. Our youngest daughter, Michelle, now 28, was diagnosed at 22 with these diseases. In retrospect, her symptoms first began the summer after kindergarten, at age 6, when we moved to a new house in the city of [redacted] that bordered an undeveloped area and was rife with deer and wildlife. We didn't know the collection of weird symptoms she started complaining about was indicative of diseases. Her health was affected first by headaches in first grade, then migrating motor pains, skin symptoms, breathing problems and declining cognitive abilities. By high school she had begun having food allergies and her reading comprehension skills had declined. She had some mental symptoms - rage and overly-emotional outbursts throughout. In college she developed anaphylactic symptoms to food, and had to get an epi-pen. Her fatigue and cognitive difficulties grew to the point where she had to drop out of college after her sophomore year.

She moved back home with us and continued to decline. She began having lightheaded spells, sometimes coming close to passing out in a grocery store. Her food allergy problems continued to grow - to 65 foods. Her diet was reduced to everything homemade, basically meat, rice, salt, cheese, black beans, a few green vegetables and blueberries. That's literally all she's been able to eat for the past 6 years. She was so sick that we were grateful if she had one good hour in a day. Most of the time she just lay on the sofa to watch a movie.

As her body got more and more sensitized, she couldn't be in any older buildings that had mold, or she became nauseated and dizzy. The potential apartments she could rent dwindled because of mold contamination. She moved out of our house and lived with her brother. Money was too challenging to calculate, so either we or her brother handled her finances & taxes. Sometimes she was so fatigued that she couldn't hold her phone. She couldn't follow a movie plot. She hasn't read a book for years.; Her dad and I cooked for her, froze meals and delivered them to her because she didn't have enough energy to cook. At 28 we still take her to her doctor's appointments. After 2 accidents, she realized she wasn't sharp enough to drive, so she stopped driving.

The consequence of these diseases running unchecked through her body for 17 years is that she has pretty much all the symptoms, from her brain to her joints, muscles, nervous system and blood. She is diagnosed with Lyme, Babesia, Bartonella, POTS, MCAD, chronic fatigue syndrome, anemia, food and chemical allergies, mold sensitivity - and probably more, but that's off the top of my head.

We have had a good Lyme-literate doctor for the past 6 years. I shudder to think where we would be without her. We try everything - she's taken years of antibiotics, anti-malarials, anti-parasitics, anti-helmetics, many herbs, things to build up her immune system and calm down her overly-allergic responses; we bought a home hyperbaric oxygen chamber that she's used daily for 3 years and she's tried Disulfiram - the latest hopeful drug for those with Lyme. She's lucky to have her family help her - many people don't.

Living in the world of Lyme disease, I hear people's stories and I know there are those who are sicker than our daughter, but it has been devastating to see her lose her teen and young adult years to these diseases. Her quality of life has been terrible - friends abandon you when you've been too sick to do anything for years. No one would wish this on their worst enemy.

I'm begging you to please, please, devote more money and interest to developing solutions for those like Michelle who are suffering from Lyme and its co-infections. We need better testing, better insurance coverage, and better treatments.

No one deserves what these people have suffered.

Thank you,
An Anonymous Mom

Sheri Allen

I am a 56 year old woman living in Santa Monica, California. I am writing to appeal to you to recognize that chronic lyme disease, or whatever you want to call it, is a real and devastating condition.  I have been struggling with symptoms for nearly 10 years.  Each year I lose more functioning.  I can now accomplish about 20% of what I hope to accomplish in any given day. 
Before my illness I was a very active, productive, bright woman.  I had a hard won sense of humor. My relationships meant everything to me.  I had a broad emotional range and an eagerness for adventure. I was planning to travel around the world and had some means to do so. My body was often said to look and act 10 years younger.  There’s more, but in the interest of brevity I want to say that my life has been destroyed and none of that is true anymore.  Each year my symptoms progress. I have seen countless doctors in an effort ever to gain back or maintain some degree of functioning, either physical or cognitive, or to stop the decline.  No treatment has ever helped me even for a short while.  I currently have significant issues with tissue degeneration. In 2017 I developed arthritis.  In 2018 my jaw became and remains dislocated.  In 2019 my anal sphicter lost integrity and I now leak fluid.  For 10 years I have had numerous food intolerances and chronic gi upset. I was at the prime of my life when this started.  I am now physically an old woman. I dredge up hope from the darkest valleys of my consciousness. This is not an easy road to travel.
I have not gone the route of fringe treatment programs and I don’t identify as a “lymie”.  I don’t want anything to do with either.  I just want to have a normal day and ideally a normal life.  A normal day to me means one in which I can manage my goals through an entire day of debilitating dizziness, intractable fatigue, periods of cognitive stupor and intense muscle pain or spasming. I have dozens more symptoms that I have accepted and don’t make any effort to change.  I just want to accomplish a day’s worth of goals without having to attend to and ultimately get ambushed by the needs or limitations of my physical body. 
In the midst of my lyme diagnosis, I received a cancer diagnosis.  I underwent surgery and chemotherapy. It was a piece of cake. I have no fear of cancer.  I have no fear of additional treatment.  It wasn’t painful or hard for me. The symptoms of Lyme Disease are terrifying and excruciating. They are unfathomable to those who haven't experienced them.  I have heard others with Lyme talk about their symptoms and I understand upon hearing their stories 2 things.  I understand why, to someone who hasn’t experienced those symptoms, it sounds like they are frivolous. There just isn’t the vocabulary to explain the intensity without sounding histrionic and many symptoms simply can’t be imagined. The second thing I understand upon hearing others convey their symptoms is exactly the sensation they are describing and the desperation they feel to be rid of it. 
Many with lyme have been sick for a very long time like I have.  Many have developed emotional issues as a result of a system that denies their experience.  Also, lyme disease effects the ability to take a deep breath.  Many of us sound anxious simply because we can’t take a complete breath.  Anxious people are readily dismissed. Anxious people have no power. Today’s perception that Lyme Disease is a fake, hypochondriacal, malingering illness is as nonsensical and barbaric as performing frontal lobotomies and electric shock and aversion therapies to cure homosexuality.  We've made progress there.  We wouldn't think to do that now.  I’m not equating the two;  I am indicating a certain parallel.
I am too old and uncomfortable to care about other people’s perception of me.  I wonder if you, without illness, who can change the tide of this perception are willing not to care about others perception too. People who have this diagnosis need help. That help can’t begin until the severity of this condition is acknowledged and addressed.  To those of you who will receive this letter but doubt the legitimacy of the physical illness, I wonder, is there any part of you that could open up to the possibility of a different perception?  George Bernard Shaw said, “progress is impossible without change and those who cannot change their mind cannot change anything.”  You in receipt of this email have the power to change lives. At last count potentially 300,000 annually according to the CDC.  Progress can’t be made without flexible thought. Is there no possibility that those of us who are appealing to you might be sharing something with you that you can’t fathom, don’t understand or about which you have been mistaken? Is there no possibility of that, are you sure?  Please reflect and consider and thank you very much for your consideration.
Sheri Allen


I am writing to you today to share a small portion of my experience with Lyme disease and co-infections.
In 2009, my first year of high school, I began to become ill. I started to pass out regularly, become extremely fatigued, and was experiencing flu-like symptoms. This is when my journey to find answers began. Doctor after doctor told me that they couldn't find anything wrong with me, and that my symptoms were due to depression, which was not the case. I was tested for Lyme disease in 2010, and the results came back "equivocal." I was retested with the exact same test a month later and still, the results came back "equivocal." I then became a patient at Mayo Clinic to try and get some answers and relief. After spending a week there the team of doctors gave me a diagnosis of Postural Orthostatic Tachycardia Syndrome. They did not look into Lyme disease any further, and the equivocal results were never followed up on by any of the doctors that I was seeing. It took until spring of 2019 for me to get accurate testing and a diagnosis of Lyme disease and co-infections. My Lyme disease and co-infections went untreated for 10+ years. My symptoms have progressed over that time, to the point where I am no longer working, driving, or doing any of the activities that others in their twenties are able to do. 
We began treating my Lyme disease with antibiotics which only made my symptoms worse. I have been treating my Lyme disease for a year now, and still, have only been met with worsening of symptoms. 
Our medical establishment in this country, the CDC and IDSA guidelines for testing and treating Lyme disease have failed me. The health insurance companies have failed me . Had I been tested using a more reliable, and more thorough test in 2010, perhaps I could have been treated successfully at that time. But now that the diseases have been active in my body for over 10 years, the standard antibiotic regime that is recommended for treating Acute Lyme disease is not enough, and did not provide any relief. Persistent Lyme is absolutely real and needs to be heavily researched! Why is it so difficult for ill American's to get an accurate diagnosis, with reliable testing, and proven successful treatment!? Persistent Lyme disease needs to be acknowledged. 
There needs to be more research. There needs to be better and more reliable testing. Doctors need to be better educated on how to treat Lyme disease. Insurance companies need to cover more treatment. I can attest to the fact that 21 days of antibiotics is not enough. I am still in pain, and still suffering. 
Please America, do better. 
West Michigan

Christine Arps

I have been suffering from Lyme for over 15 years now.  Didn’t know what was wrong with me and went to so many doctors!  
When I heard my heart was bad and may need a pacemaker, and no one in my family ever had any heart problems, I decided to figure it out for my self.  I read that Lyme tests were not accurate, and I had every Lyme symptom, so I found someone (a friend of a friend and not a doctor, who led me to a Lyme Literate Doctor.
Paid for my own IGNX test and it was positive!!!  My doctors had tested me for the last 15 years with a negative result and they told me I do not have Lyme Disease.  I was so happy to finally figure out.  Had 2 knee replacements, 2 shoulder surgeries, spine fusion and MS.  So much pain.  Gained 50 pounds no matter how good I ate.
I’ve been treating on antibiotics for 15 months now and I am slowly getting better.  I am maybe 70% better and I am just starting Ceftin, which will help with my neurological Lyme.
The medical profession cannot help us and because of that, leads to people getting sicker and sicker.  It’s criminal and the CDC needs to help us….it’s debilitating.  I was in a wheelchair and unable to drive a car or even log into my computer because I didn’t know how.
The pain and suffering that I have experienced without any help or acknowledgment has led me to lose family members and my wondering career.  This is just not fair and no one should have to go through this!
Christine Arps
Westfield, MA

Gretchen B

Persistent Lyme (chronic) needs to be acknowledged and addressed by the federal government. Countless thousands of patients are being discriminated against--46 years of Lyme & no help has ever been provided! CDC & NIH need to be held accountable.  

It was only after I spent thousands of dollars of my own money ( insurance didn't cover) and advocating for myself that I finally saw improvement in my symptoms.

I was in such bad shape that it all seems a blur.  I couldn't think straight, I had executive function issues and had to leave my job.  I also suffered lyme carditis.  This could have killed me. Who knows the damage it has done.

COVID-19 comes on the scene and all kinds of money is thrown at it.

For most COVID-19 does not pose significant risks, but people with lyme disease and other tick borne infections suffer.  Government needs to wake up to the Lyme pandemic.  It will only get worse as we have more deer population and mild winters that do not slow down tick activity.  Please take this seriously and spend some money and use resources to get a handle on this pandemic.

Gretchen B.

Lucy Barnes

Dear Abby

Good morning!  While getting my thoughts together to address the TBDWG, a song popped in my head.  It was written by the late John Prine and is titled, “Dear Abby”.  And this is your lucky day, because I’m going to sing it to you!  But, first…

Pauline Phillips, aka Dear Abby, was a famous problem solver who spoke to millions of readers and radio audiences over the years.  Anyone could write to her with their concerns and she would diligently do her research and respond in kind with her compassionate advice.  

However, in John Prine’s song, the opposite is true.  Dear Abby was no longer providing honest, reliable responses to her readers.  It seemed she had a different agenda, and she just didn’t care.  Not only did she help no one, she just made things worse with her lame advise.

And ya know, listening to John Prine’s song with that dreadful lack of concern and inaccurate information, I am reminded of the CDC, IDSA, NIH and others who have the power and duty to reach out to millions with solid, honest, life-saving recommendations in order to make their lives better.  

But, for over 40 years they’ve stubbornly refused to do so and they fight us every step of the way!  Government employees should NOT be ignoring, dismissing or attacking sick patients, doctors, or anyone else for that matter.  They should be producing solid recommendations for the betterment of all, at warp speed. 

As a result of the agencies perverse mishandling of science and their appalling, self-serving recommendations over the decades, people have been suffering and dying from CHRONIC Lyme disease.  We MUST address CHRONIC Lyme disease NOW, because…  

It’s a terrible thing for anyone to have to beg for their life.

Dear Abby, Dear Abby
My feet are too long
My hair's falling out and my rights are all wrong
My friends they all tell me that I've no friends at all
Won't you write me a letter, won't you give me a call
Signed- Bewildered

Bewildered, Bewildered
You have no complaint
You are what your are and you ain't what you ain't
So listen up buster, and listen up good
Stop wishing for bad luck and knocking on wood

Dear Abby, Dear Abby
My fountain pen leaks
My wife hollers at me and my kids are all freaks
Every side I get up on is the wrong side of bed
If it weren't so expensive I'd wish I were dead
Signed- Unhappy

Unhappy, Unhappy
You have no complaint
You are what your are and you ain't what you ain't
So listen up buster, and listen up good
Stop wishing for bad luck and knocking on wood

Dear Abby, Dear Abby
You won't believe this
Bum stomach makes noises whenever I kiss
My girlfriend tells me it's all in my head
Bum stomach tells me to write you instead
Signed- Noise-maker

Noise-maker, Noise-maker
You have no complaint
You are what your are and you ain't what you ain't
So listen up buster, and listen up good
Stop wishing for bad luck and knocking on wood

The remaining verse is a bit more risqué than I’d like to recite here, so please Google John Prine and Dear Abby if you’d like to hear the rest.  And stop ignoring and denying CHRONIC Lyme disease.

Thank you for your time.

Signed- Dear Abby

Lucy Barnes, Director
Lyme Disease Education & Support Groups of Maryland

Allie Bogmenko

It’s 5:17 pm. I’m writing this from my bedroom floor- where I collapsed after finally getting the energy to stand up and brush my teeth even though I’ve been awake since 10 am. I have to stop seizing first, I have to stop shaking- I have to wait for my arms and legs to work long enough for the task at hand. I don’t venture far from my bed these days- and haven’t for the last 3 years. But I am one of the lucky few Lyme patients- not in the fact that I have recovered from Lyme disease - but in the fact that I have a husband that loves me and knows what I have gone through. He went from my husband to my caregiver. I can now longer drive- the last time I did I had a seizure and drove my truck off the road.See- I was undiagnosed 25 years with CNS Lyme disease ( it’s in my brain, heart and spine)

My diagnosis only came after I woke up paralyzed last april- after years of begging for help and not receiving it. It took 6 months of going Doctor to Doctor as the hospital I was admitted to for 3 days for paralysis refused to grant me a spinal tap. Finally- Halloween 2019- almost 4 weeks after having a needle shoved into my spine- we had an answer- Lyme disease. I had been negative in 7 blood tests for Lyme prior to this. I had been misdiagnosed with 5 other autoimmune diseases- they were testing me for MS. 

My neurologist “ had never seen this before”. He didn’t know how to treat me. I had an infection in my brain and spine and no infectious disease doctor would take me as a patient. “ It’s not in your blood” they said. “ But I have a positive spinal tap” I would yell back. My comments fell on deaf ears. It took 7 additional months to find a doctor that would treat me. One even agreed to help me- but when another blood test came back negative she had her nurse call me and tell me “ you don’t have lyme”

“ But I still can’t walk- I have gone blind in my left eye” 

“We can’t help you” they would respond.

That is just one chapter from my life- from the story about a bug that most likely bit me as a child- I will never really know- they can only go off of when my symptoms started- I never had a bite mark- but this disease has followed me for 25 years - now I finally have a word for it- Lyme disease.

Allie Bogmenko
Grand Prairie,TX

Marianne Broome

I have been unwell with a multitude of symptoms for 18 years. The denial of persistent (chronic) Lyme disease by our government and the lack of accurate testing has ruined my life and that of countless others. We deserve to be heard and deserve to have access to treatment for this debilitating condition. 
The first episode happened 18 years ago. I do not recall being bitten by a tick but I lived on a farm and often hiked through forests and uncut fields.  Despite being extremely fit and healthy, I suddenly developed debilitating fatigue, joint pain, body aches, fatigue, tremors, brain fog, eye problems, difficulty speaking, muscle twitching and cramping, riniging in the ears and many other symptoms. I was unable to work.  After seeing several doctors I was diagnosed with fibromyalgia and told there was no treatment.  
Through dietary changes and my own research into diet and supplements, I managed to get to the point where I could function enough to look after my kids and work part-time.  Gradually I recovered some more but still lived with chronic pain and fatigue. 
Then, three years ago, all of the symptoms flared up again, and other symptoms appeared, including peripheral neuropathy.  I was sent to neurologists, rheumatologists, and other specialists. I kept insisting I thought I had Lyme disease, but the Elisa test came back negative, so this idea was ridiculed and dismissed. After twenty doctors, including two infectious disease specialists, all of whom I asked about Lyme disease, I had no diagnosis and no treatment.
Finally, I saw a doctor who suggested testing for the co-infections. The test came back positive for seven co-infections, indicating that I probably also had Lyme disease. It was suggested I get tested for Lyme disease in the US. This test came back positive.
Trying to get treatment for Lyme disease and co-infections in Ontario is very difficult. The standard two weeks of Doxycycline sent me further downhill and I have since learned that this is not sufficient for a long standing infection.  I found one of the few clinics in Canada who treat Lyme disease and was prescribed a long list of antibiotics, antimalaria drugs and other prescription medications. After 50 days of this, I was much worse and was now bedridden. It stopped the medication and it took me several months to get back on my feet. 
Realizing that antibiotics and other strong prescription medications had overwhelmed my system I switched to a naturopath. Through detoxing, herbal remedies, supplements and other alternative approaches I am now able to function at about 60% of my former self. I still have symptoms of Lyme, EBV, Babesia and possibly other infections. 
Without going to an expensive clinic in the U.S. there is nowhere else to turn for treatment if you live in Ontario. Doctors who try to help Lyme patients are often reprimanded so the majority will not have anything to do with a Lyme patient. They prefer to stick to the denial of persistent (chronic) Lyme disease than risk losing their license. 
It is my hope that this initiative will shed enough light on the situation that persistent Lyme disease becomes acknowledged and treatment is made available for the thousands of people who are suffering because their condition is denied. 
Marianne Broome
Schomberg, Ontario

Judy Campbell

Dear Tick-Borne Disease Working Group:
First, THANK YOU for listening!  I am writing to represent myself as well as many thousands of others who have been affected by the misdiagnosis of Lyme Disease and/or other tick-borne co-infections of Lyme Disease.  Therefore, this illness becomes chronic.  
My story has been a journey like so many others and my story is simple.  I am a “Mom on a Mission” to help my family and speak out for others.  My prayer is that the TBDWG will understand that chronic Lyme DOES exist and has affected millions of people with devastation for a healthy future.  I believe that the negligence of our CDC and our medical field to adequately diagnose and treat Lyme Disease (chronic) is criminal.  Infectious Disease physicians, neurologists, rheumatologists and primary care physicians should be the very ones helping us, not referring us to psychiatry and disregard our illness that is complicated with a host of symptoms and eventually affects other organs in the body.  
I grew up in a Missouri rural town.  My family loved to hunt for morel mushrooms and spend time at the lake.  I was never diagnosed properly in the mid-70s, so therefore, this disease has become chronic and impacted my family.  In the 90s, I became very ill for almost 13 years, leaving my job and finding this active wife and mother in bed most of the time with little family interaction or social life. My weary and symptomatic body put my life on hold at the most crucial time for me . . . raising our children and preparing financially for our children’s college.  I had absolutely no more organizational skills to use on my job or at home.  My body crashed for unknown reasons while doctors were grasping at straws to come up with a diagnosis.  Over the last 45 years, I’ve been diagnosed with mono, Lupus and fibromyalgia; I was checked for MS a couple of times – none of which were solely accurate. (NOTE: I was diagnosed with Lyme Disease by my OB/GYN back in the early 90s and it was discredited by the Mayo Clinic with follow-up blood work.) 
My health puzzle came full circle about four years ago and I am now a huge advocate for those suffering from chronic Lyme Disease.  In the back of my mind, I remembered that Lyme Disease diagnosis given to me and how quickly it was dismissed.  Why was it disregarded?  I now know that answer. The two-tiered Lyme Disease test is faulty and little knowledge with our medical professionals misses it totally.  I’ve watched family members suffer incredibly with everything from neurological issues to gastrointestinal issues, just like me.  My own illness should have prepared me for this, but it didn’t.  My numerous doctors over the years led me astray.
While working in our Association, I have met so many wonderful people. Monthly, I hear sad stories of suffering and their pain in not getting treatment until it’s too late.  The symptoms are real, people are sick, people have no social life, they are financially and physically broken, and they yearn for a better life.  People are desperately hungry for help and proper medical care.  Fortunately, my emotional and physical state right now can handle this and I want to be a listener.  I want to help with educating others about Lyme Disease.  Our Association does all we can to educate prevention but by the time many folks get to us, they are already in trouble with chronic Lyme Disease.  We are grateful for those that we’ve helped! We need the medical community!  Lyme Disease is not new. 
I want to share a couple of incidences that I personally have witnessed and have seen the report.  The anonymous person headed to the ER on two different occasions several years apart.  I share these two incidences because they don’t make sense. My points . . . this is how the Lyme Disease (chronic) patient is treated over and over again.
  1. The first episode happened in 2008 where a brain spec was ordered by a prominent Infectious Disease doctor.  Patient had been diagnosed by this doctor with Lyme Disease and was under treatment.  The brain spec was to inform the doctor and patient of any lesions, etc.  The radiologist recorded this patient’s brain of someone with Lyme Disease or Bartonella.  The Infectious Disease Director of this particular hospital doesn’t even believe in Lyme Disease and especially chronic Lyme Disease.  The confliction, how can that be and why between two hospital doctors?  
  2. The same young adult patient goes to ER at a different hospital with numerous symptoms of chronic Lyme Disease 7 years later.  This patient already has had every test under the sun because of so many traveling symptoms to other organs and parts of the body over the years.  There have been many valid answers in testing other parts of the body, those are documented.  The ER doctor admits the patient due to heart issues they wanted to continue to check out.  They decide to bring in a neurologist due to the vast neurological symptoms (migraines, cognitive, etc.) over the years since the illness.  The patient’s previous record is already in their hospital records BECAUSE the prescribing physician in the first episode is affiliated with this particular hospital.   The neurologist makes rounds to visit the young adult patient.   The neurologist “gaslights” the patient despite looking at the previous records so dismisses the Infectious Disease doctor with this affiliated hospital.  The neurologist berated the patient and told the patient to seek mental help. The neurologist questioned all the documented symptoms over the years and was very unkind.  What?  Definition of gaslighting: manipulated by psychological means and questioning their own sanity.  This is so wrong on so many levels!  The word, “bully” comes to my mind.
I ask you to please think about these questions and answer them accordingly to all of those suffering as you discuss chronic Lyme Disease.  Review this in the eyes of a frustrated and very sick person.  This could be you or your family member and maybe you know of someone who desperately needs better care with an unexplained illness.  Lyme Disease has no boundaries or limitations and is everywhere despite the CDC data.  Cases are not being reported.  Are doctors told not to report cases? If so, why? 
  1. After 40+ years, the CDC and the medical field continue to disregard chronic Lyme Disease. Why?  Science should be proving a better and more accurate test for Lyme?  Since the ELISA test has been faulty for years, why would any physician ignore the obvious symptoms especially when they are seen?  Remember, not everyone gets the bullseye rash or ANY rash.  Not everyone has 5 bands (CDC criteria) on the Western Blot test to be positive for Lyme Disease.  Symptoms occur later, why?  Are doctors trained and told to discredit Lyme Disease patients?
  2. Why aren’t patients clinically diagnosed for the many symptoms that accompany Lyme Disease when no other tests explain the ailment or the illness?  We all know that Lyme Disease mimics MS, Lupus, Fibromyalgia, Epstein Barr Virus, ALS, Parkinson’s Disease and Alzheimer’s. The history of a patient should speak volumes in clinically diagnosing Lyme.  We all know that Lyme can attack anywhere in our bodies through the cells and tissues.
  3. Why isn’t our government helping us?  We watch our government get involved with all kinds of diseases but ignore the very one that can be so debilitating and deadly if not diagnosed and treated properly.  COVID-19 has been categorized as a pandemic.  Chronic Lyme Disease patients have been living in a pandemic for years.
  4. The Lyme bacteria is a spirochete.  Please tell us why we treat syphilis but ignore the obvious spirochete in Lyme Disease?  Doctors would never allow a person to go untreated with syphilis or they would die, wouldn’t they? 
  5. Do doctors really believe that fully functional people would want to fake an illness and have a substandard life? Are doctors aware that disability payments go toward medical costs and don’t subsidize any part of living expenses?  Most patients will tell you they have been to see at least 10 doctors, if not more, and then referred to psychiatry.  A patient can endure years of mental anguish with no answers and more importantly, stay extremely sick.
  6. Why would any doctor tell a person that Lyme Disease doesn’t exist; it isn’t in the Midwest (or any other state for that matter)?  We live on the state line of MO and KS.  We have members in our Association who were told that it is in MO but not KS.  Seriously?  Insects, birds, mice, deer, etc. all travel. We travel.  How could any medical professional believe that Lyme Disease only exists on the East Coast?  To me, that statement discredits them as a medical professional.
  7. Why aren’t more doctors learning and researching Lyme disease?  What are we hiding?
  8. Treatment costs . . . most insurance companies will not pay for Lyme Disease treatment after a 21 day course of antibiotics.  This is very misleading on the CDC website as a cure.  I’m here to tell you that 21 days of treatment is not enough!  Many people have to spend thousands “out of pocket” for further treatment.  Lyme Literate MDs can’t take insurance because of this.  They are the experts and know the disease.  The Lyme Community asks that you also not discredit any physician trying to treat chronic Lyme Disease with and without the long-term use of antibiotics.  For some, they only feel better with antibiotics.  Many folks have to try bottles and bottles of supplements to build their bodies back, I’m proof of that. Getting well is possible, but it takes YEARS of treatment and lots of “out of pocket” money.
Thank you for listening and please know, I am grateful for your work!  I am urging this group to fight for us and deal with Lyme Disease research “head on”!!   The change needs to come from the IDSA, CDC and the NIH.  This disease should NOT be controversial, ever.  My experience with illness in my own life and those around me are real. Please take the time, patience and spend the research money to invest into chronic Lyme Disease and particularly accurate testing.  You have millions of people who are counting on you.  This is your opportunity to finally end this madness of neglect to the Lyme community and put dignity back into lives so those very lives can begin to heal.  While prevention is key, diagnosing properly and treating those with Lyme Disease is crucial.
Respectfully and sincerely,
Judy Campbell, President 
Lyme Association of Greater Kansas City, Inc.

Rex G. Carr

My experience and the experience of clinicians that use traditional antibiotics to treat Persistent Lyme disease leaves no doubt that there is chronic infection. If you treat the infection with the correct antibiotics, long enough, everyone improves. I am an expert in patients with chronic pain and fatigue. Board Certified in Physical Medicine and Rehabilitation, practicing for 40 years.

Rex G. Carr, MD FAAPMR
Hanover, NH

Dolores Claesson

The guidelines from the Infectious Diseases Society of America (IDSA) for the treatment of lyme disease and co infections should be tossed in the waste bin. These guidelines are preventing very ill people from obtaining the proper treatment and have caused deaths in a number of cases. People been told to wait and see if their child shows any symptoms before receiving prophylactic antibiotics after a tick bite and the children have died. Treatment guidelines for types of antibiotics as well as duration are also incorrect. I lived with excruciating back pain and sciatica due to tick borne pathogens and with a long course of IV antibiotics, I am pain free. I never saw an EM or bulls eye rash initially but after taking doxycycline an EM rash showed up on my arm. Six months later, I changed the antibiotics and another EM rash showed up in the identical place as the first one. Obviously, Borrelia was still in my system despite the six month short course of antibiotics. I continued to test for co infections and to treat with the most efficacious antibiotics to eradicate all known pathogens that I could ascertain.

We need good research on the panoply of pathogens and the most efficacious medications to address them. Borrelia and some other pathogens can cripple the immune system and we need to figure out how to restore the immune system so that we can eliminate the deleterious pathogens. Many with lyme have CVID, aka common variable immune deficiency and our complement system is being thwarted by Borrelia and Mannose binding lectin (MBL) deficiency is common. MBL is crucial for overcoming almost any pathogen. We have read studies on the Asians with NON HIV AIDS and found that they had auto antibodies to interferon gamma. We need a complete study on the immune systems of chronic lyme patients to figure out a cure for chronic lyme and co infections. Lyme patients have low immunity coupled with auto immune issues. I have had people tested for auto antibodies and found them to our thyroid, Anti nuclear, Anti mitochondrial, Anti cardiolipin, Anti parietal cell, Beta 2 glycoprotein 1 antibodies, and others. A study on the auto immune issues triggered by lyme should be a good study to undertake. Because of the immune compromisation, we see the reactivation of all previously controlled viruses and Toxoplasma gondii (if present) and that should be addressed. Our B lymphocytes need to be examined and evaluated. The mistreatment of lyme patients by the Infectious Diseases Society of America will go down in the annals of history as another Tuskegee experiment.

A thorough study on the pathogens in lyme patients and ticks needs to be undertaken. I have found many bacterial infections in those with lyme and see Franciscella tularensis and holartica, Bartonella, Babesia, Ehrlichia, Anaplasma, Tick borne typhus, Rocky Mountain spotted fever and other spotted fevers, Chlamydia pneumonaie, Mycoplasma pneumoniae, Coxiella burnetti, parasites, tons of viruses, fungal infections. Opportunistic infections of AIDS patients and transplant patients show up in people with lyme as well. Time to get busy figuring this out and to use the IDSA guidelines for lining animal cages at NIH, NIAID, WHO, IOM and Rocky Mountain Labs. We have informed you of the problems with lyme and co infections over many decades/generations and now it is on your conscience to do something constructive about this world wide issue. One fed up and thoroughly disgusted lyme patient.

Dolores Claesson

William Clerico

I suffered for 5 years and spent thousands of dollars on treatment attempts to combat chronic Lyme and accompanying co-infections. I went through long periods of being unable to work due to diminished cognitive function; extreme depression; and constant physical pain.  It’s impossible for anyone of moderate intelligence to deny the existence of chronic Lyme with so many people suffering from the same chronic symptoms.  Our government agencies need to take this widespread health issue seriously and invest in comprehensive diagnostic approaches and treatment.

I suffered for 5 years and spent thousands of dollars on treatment attempts to combat chronic Lyme and accompanying co-infections. I went through long periods of being unable to work due to diminished cognitive function; extreme depression; and constant physical pain.  It’s impossible for anyone of moderate intelligence to deny the existence of chronic Lyme with so many people suffering from the same chronic symptoms.  Our government agencies need to take this widespread health issue seriously and invest in comprehensive diagnostic approaches and treatment.

William Clerico
Lincroft NJ

Morgan Clingenpeel

I am wife and mother of two beautiful girls, residing in Moore, Oklahoma. I was diagnosed with Chronic Lyme in April, but my symptoms have been going on for years. I grew up on a Horse Ranch in McLoud, Oklahoma, and have been bitten by numerous ticks since I was 6 years old. I am now 33, and Chronic Lyme Disease is taking over my life. I am unable to function without antibiotic treatment. 
On Christmas Day 2019, instead of spending a joyous holiday celebrating the look of pure happiness on my young daughters faces, I spent the day in the emergency room, with symptoms so severe I thought my girls might lose their mother. 
Thankfully, my OBGYN, who has a rare disease herself, recognized that my symptoms were nothing she had ever seen before. She was able to get me a diagnosis and started me on the path to wellness. I have been getting treatment from a DNP in the DC area since April, and have spent thousands out of pocket for testing, treatment and medication because my insurance company won't cover Chronic Lyme Treatment and care. I am unable to work, and some days I am unable to get out of bed. I am grateful for the treatments I have started, because without them, I am certain I would not be able to so much as formulate the words to write this statement.
The battle for medical coverage of Chronic Lyme Disease is a crime against the thousands of people who suffer from it. It's like taking two punches at once - once from the terrible symptoms and loss of quality of life this disease causes, and twice from the insurance companies and medical community, who at large do not treat or cover Chronic Lyme.  Persistent Lyme Disease must no longer be ignored. 
Please let me know what I can do to help further the discussion of this issue.
Morgan Clingenpeel


Hello HHS Working Group,
I have been surviving Chronic Lyme Disease and co-infections since 2008.  For years I wasn't able to get out of bed because I was so sick.  Luckily with the help of 2 Lyme specialists here in WI I have improved.  But I am still disabled and have flare ups of symptoms when stress and anxiety are high or sometimes other factors like weather and/or reactions to food.  I will never be able to be healthy or over Lyme and co-infections.  Maintaining my health is my full-time job.  Chronic Lyme Disease is a mental challenge every day.  It took my life away and changed it forever.  It has been the most profound things that has ever happened to me.  For it to be not considered real is a complete slap in the face and the worst type of gas lighting that can be done to people.  
Madison, WI


Sussex County has the distinction of perhaps being the last region where a Citizen passed  away from contracting Powassan from a tick bite in 2019.  In regards to your voting ,I was rather taken back at your process as I listened to your last FWG meeting no. 13 whereby you were discussing whether to take a re-vote on including information on persistent (chronic) Lymes and tick borne diseases to Congress.   It was disconcerting that some didn’t understand the voting process as it pertains to abstentions but I am glad that the same results prevailed.  That entire process as it played out was not a good look for your group. 
I don’t have a designation after my name ,as most of your group does , but I have common sense and I guess I can put CLDP   after my name , Chronic Lyme Disease Patient .   Having suffered with many symptoms at different levels of severity over the years , I can speak to health issues many in the ever growing population of infected persons experience.  I have suffered with heart issues, eye sight issues, exhaustion, headaches and more .   For heaven sakes it has been over 40 years and the needle hasn’t  moved far. Please don’t insult the masses with statements that infer that physicians wouldn’t be able to figure out which guidelines to use for new cases versus those with chronic conditions. Please do the right thing and give this problem the proper attention it deserves. Our physicians need this as does the patients . Lives depend on it.   Thank you. 
Sussex County

Patricia Fierre

To whom it may concern;
Lyme disease is different from other diseases when it comes to the support, treatment and understanding you get from the medical community and loved ones.
If you have cancer you will get help, support and treatment from the doctors, family, friends, coworkers and everyone around you.  
However with lyme disease you will not get support, most of the medical community still tries to deny the existence of chronic lyme disease.  You will find yourself alone trying to figure out what is going on in your body. It took me 1.5 years to finally find out I had chronic lyme disease.     
When you are sick with chronic lyme disease you will have  doctors and loved ones telling you,” you need to try harder, it’s all in your mind, you are lazy, you are dumb, the reason you can't sleep is because you are in bed all day.” 
All those around you will be angry at you because things that were so easy for you, prior to this illness you simply cannot do. You will in most cases be alone to figure out why your body is falling apart and why your life is suddenly upside down. 
Everyone with lyme disease is affected differently, some are affected physically others mentally. I was affected both physically and mentally. My mental challenges are the hardest to deal with. I have been at the  point where I could not hold a conversation for more than 5 minutes, my mind just couldn’t comprehend and give back feedback to the other person. I couldn’t read, I couldn’t stop pacing up and down in my room because my body was in constant fight off flight. It was a storm of symptoms; bell's palsy, severe headaches,  trigeminal neuralgia,  body muscle pain, excruciating pain in the soles of my feet ,severe light and noise sensitivity, the air that touched my skin and the water that I loved to feel in a bath were all unbearable. Visual and musical hallucinations, brain pressure, numbness, hair loss, night sweats, eye pressure and dryness, skin peeling, purple marks that would come and go, depression, anxiety and a storm of other symptoms.I became hypersensitive to everything, every day was torture to stay alive. 
My lyme disease progressed to the point that now I am unable to work. There are days where I have a hard time to care for my family or myself. I still have bad days when I am not able to leave the house. 
After many years of treatment I have improved, however I am still very sick six years after being bitten by a tick.
My Lyme disease improves when I am treating with antibiotics. However when i stop treating my symptoms return and get worse.
It is time that chronic Lyme disease be properly recognized and funded to find accurate testing, treatments, and support  just like we have for other diseases.
Persistent Lyme disease must not be ignored any longer. Hundreds of studies have proven chronic lyme disease exists. 
Thank you,
Patricia Fierre
New York, N. Y.

Christina Fisk

My comments refer specifically to the Working Group’s failure to recognize and responsibly pursue the problems inherent in chronic Lyme disease.
For nearly fifteen years, I’ve politely and professionally crafted my public comments seeking help for the victims of Lyme disease within a framework encouraging cooperation, collaboration, and compromise.  I am a reasonable person – I lead a respected and responsible organization. But I look at how little has been accomplished for Lyme patients in all these years, especially in light of the inspired explosion of monumental effort in the COVID-19 battle, and I’m discouraged and angry on behalf of the ever-suffering Lyme patients who are forced to live in a malignant twilight zone of medical disinterest and disrespect.
As I consider how to compose this comment, I find myself viewing this topic through the prism of our times. It occurs to me that the raw deal dealt to the thousands upon thousands of victims of Borrelia infections is not dissimilar to the horrendous abuse heaped upon other selectively disenfranchised communities in this country.  Lyme patients are ignored and marginalized in a systematic way.  They are denied access to health care; they are ridiculed and dismissed.  And the “official” selective blindness to the problem aligns appallingly with the president’s crazy calculation that if you ignore it, it doesn’t exist.
Men, women, and children are being sickened and disabled daily by bacteria that have confounded science and medicine.  There is no argument that when these bacteria enters the body, all hell might 
break loose.  Or  -- maybe not.  So little is truly known about this bacteria and how it attacks the body that nobody can reliably predict exactly what will happen.  The only small piece of the Borrelia puzzle that is moderately predictable is that if the disease is caught in its earliest stages, antibiotics are more likely to cure the infection.  Beyond that, there’s precious little knowledge. 
This Working Group was formed to study the difficult issues posed by tick-borne diseases, particularly Lyme disease, and identify real pathways to improvements in science and medicine.   Lyme disease accounts for over 82% of tick-borne diseases and constitutes a multi-billion dollar threat to this country.  It also constitutes an existential threat to millions of decent, innocent people who stand to lose their health, their livelihoods, their family stability and more if they get this disease. This group was not commissioned to tow the political line of the CDC, NIH, nor the IDSA’s “opinion leaders” and build a false-fronted hollow response to crushing issues that demand solid, difficult answers.  It was not commissioned to dismiss the realities of Lyme disease victims if they fail to fit a pre-defined “profile”.  
We stand in the middle of a historical moment where empty platitudes protecting years of selective and systemic ignorance, bias, and self-interest at the expense of innocent human beings are no longer even remotely acceptable.  Ignorance kills people.  Blind bias kills people.  Administrative cowardice kills people.  The systems that are drenched in this bias, ignorance and cowardice need to be dismantled.  
Lyme patients are human beings who are standing in front of you, telling you THEY ARE SICK.  Telling you they have continuing symptoms of LYME DISEASE. Telling you THEY NEED HELP.  What are you going to do about it?  Tell them they are not sick?
Just because people don’t understand this disease doesn’t mean it isn’t real. 
Just because science has failed to decode this bacteria doesn’t mean it isn’t eating people alive.
Just because YOU can’t count the number of cases doesn’t mean they’re not there.
The people sitting on this Working Group are empowered to make a difference to get this job done.   As one exhausted and frustrated leader of an organization dealing with the disenfranchised, suffering victims, I implore you individually to look at yourselves in the mirror and decide who you are in this moment in history.
Christina T. Fisk
President, Lyme Action Network

Wendi Gschwind

Hello, I have Chronic Neurological Lyme Disease. I was diagnosed in 2010. Looking back at my medical history and symptoms, I have been infected for about 30 years! Finally found a Lyme Literate doctor in August 2011 and started treatment. My life was ruined. I had to retire from my State government job at 43 years old. Lost my place to live, almost lost my car and lost my friends while extremely sick and treating this horrible debilitating disease. I was in treatment continually for four years before I entered into remission. I have currently relapsed for a second time and have been in treatment for four months so far. The last time I relapsed, it took a year and a half to reach remission.

Please realize the seriousness and effects of this disease. This is not political, it’s people’s lives! Lyme patients need insurance coverage for Lyme treatment, accurate testing, and specific drug therapy.

Thank you.

Wendi Gschwind
Forest Hill, Maryland

Lynne M. Halley

To all members of the Tick-Borne Disease Working Group,

I am a veteran of the United States Navy. I served 16 years before being medically retired. I started as enlisted (E-5 my highest rank) for over 8 years and became an officer (O-3E my highest rank) for the rest. I moved to Dayton area upon leaving the Navy to be close to a base (Wright -Patterson AFB) and VA (Dayton VA), so I can get healthcare for me and my family. There is an Air Force female fighter pilot, Col Nicole Malachowski, first female thunderbird pilot, who testified for the first hearing about what happened to her when she started getting sick. My story is not too different from hers.

Starting July 2016, I began having numerous odd symptoms that no doctor could figure out what was wrong. I saw countless base/VA/ER doctors trying to get help because I did not know why I had so many strange symptoms and pain. I was given numerous diagnoses between close to 20 doctors. Fibromyalgia, migraines, unknown rash, overactive bladder, joint pain from arthritis and others were among the diagnoses. I was 45 when all this started, but I felt like I was 80. After being dismissed once again by the base and VA, I started doing my own research. All my symptoms matched that of Lyme disease. I knew nothing about Lyme so the small bull’s eye I saw in July of 2016, I had no clue it was Lyme, thought it was a spider bite. My husband figured it out by researching my symptoms of:

Problems swallowing
Right forearm (prior surgery)
Neck/back pain
Chest pains/palpitations
Ear pain
Blurry vision
Frequent urination
Muscle Aches/Pain
Swollen glands
All joint pain
Air Hunger
Tingling fingers and toes
Left side weakness
Abdominal pain
I began looking online too and after I read so many stories of people with my exact same symptoms that I have and going through the same tests and harassment by doctors that I have, I knew we were on the right track.  I did get tested by VA and base for Lyme after my symptoms were so long by September 2017, so I asked my primary care doctor to run a Lyme test on me. They used the EI/ELISA test in September 2017 with negative results. I had tried to get more tests run, but everyone told me no or completely ignored me. But as I researched, I found out how unreliable the testing for Lyme disease looking for is. Plus, conventional medical doctors know little about Lyme disease at all.  It was well over a year since becoming ill that I began realizing the possibility of having Lyme disease. This delay made it become chronic and harder to be detected by current CDC protocols.  I did have a few doctors that suspected auto immune diseases (tested for some too). They ran tests for lupus and MS suspecting it was that.  This showed me how misdiagnoses can happen so easily.  After researching online, I was able to find out more about Lyme disease.  I was able to find a Lyme literate doctor that is trying to make it possible for me to get better. He determined I had Lyme disease from a clinical exam and check of medical history.  I sent out for further testing done by the lab IGeneX. I have positive results for Lyme disease and some co-infections (Babesiosis and Ehrlichiosis) as well that do meet the CDC requirements and my county health department was notified by the lab IGeneX.  I know the state department of health contacted my LLMD doctor for his clinical diagnosis (which was Lyme disease).
Now, I have chronic Lyme disease. Some doctors say it does not exist. While I, as well as many others, are suffering needlessly because the CDC refuses to admit their testing is inaccurate and that it’s becoming chronic and sufferers are left with no help from doctors, insurance companies, even friends and family. Unfortunately, since no one at the VA, base, or local hospitals will help, I had to start paying for everything out of my pocket. I can get no help with treating it.
I know that the VA and base will never agree with the Lyme disease diagnosis. My life was falling apart. I was in constant pain. I could not get any help from the VA or base. I even started doubting my own mind. Being told that nothing is wrong and being in horrible pain. I did not know who to turn to. My own research and the ability to pay for a doctor out of my own money, has led me to some hope. I am now on a treatment plan and researching more treatment options that might work. Like, hundreds of thousands of others, I only want to have some quality of life back. 
There are also senators and representatives (Senator Susan Collins, ME; Representative Chris Smith, NJ; Representative Anna G Eshoo, CA to name a few) whom co-sponsored a bill called Kay Hagan Tick Act. This was signed by the President on December 2019. Simply said, it will budget plenty of money over 5 years to the right health organizations to do more research.  Now, the appropriations committee must set aside the increased money for this FY2021 budget. 
There is no cure for this. The treatment of this with antibiotics alone is not the cure all (little help either when it becomes chronic). So, I am asking for some help. I no longer want to see anyone treated as horribly as I was, especially children. This whole ordeal reminds me of when HIV and AIDS was beginning to become known. Doctors knew nothing and did not believe there was a problem. Lots of people died because no one would help. That is all different now. The only difference is AIDS can kill, Lyme disease only makes you suffer in pain for years but in more and more cases it has killed.
No one should have to suffer because we are so far behind in research. Technology has improved since the 80s and 90s when the CDC developed the two-tier testing method. It does not work. Research needs to be done. Every year more and more people get a tick-borne disease, but we are not educated enough to understand the danger. The public needs to learn about prevention. Doctors need to know how these diseases really are. We all have the goal: finding an easy diagnosis and a simple cure.
Many people do not want to share their stories for fear it will be used against them or have just grown tired of all the controversy and have given into the fact that things will never improve. I believe that with the help of our government, we can overcome this problem for the health of men, women, and especially children.
Very Respectfully,
Lynne Halley (LT/O-3E/USN-Ret)

Ann Hirschberg

Please address chronic Lyme Disease.

It does exist and people are suffering long-term effects as well as loss of livelihood, and proper care and treatment, - and hope.

You are there to find ways to help.


Advocate for decent awareness, and care of Lyme disease since 1990,. 

Ann Hirschberg

Rhonda Howdyshell

Just last week another doctor shared with me that it wasn’t possible to have advanced or undiagnosed Lyme Disease. Find that contrary to my own experience. I was only 8 years old growing up in Northern Va when my family thought sending me to camp in the Shenandoah Valley for 6 weeks would be wonderful adventure! It was horseback riding, pond swimming, hiking and outdoor showers and privies were all part of my summer adventure! Then one day a counselor was helping to brush and braid my hair when they found an engorged and embedded tick in my hair. It was a big deal and the nurse had to remove it, using a match to burn and make it come off. When I came down with a disseminated rash a while later—they quarantined me with measles. It was determined later it wasn’t measles. My later childhood was marked by allergy issues which had me on antibiotics often. Later I developed a strange blood disorder where I would bruise and bleed upon the slightest bump.

I moved to the Shenandoah Valley in 1979. Ticks were common place. Most symptoms Drs and I wrote off to getting older. including thyroid disorder, skin mottling, confirmed arthritis (suspected RA) in my hands and feet, and joint deterioration in my hip that required a replacement to walk.

I retired at 62 early, as the cumulative deterioration was making work very difficult. The next spring I found a tick attached to my chest. I had no bulls eye, it was only on 8-10 hours. The subsequent flu, neck pain, and facial paralysis didn’t give me a clue. but a migrans rash that appeared on my calf sent me to the doctor and they diagnosed Lyme based on symptoms (note no blood test was administered! Which means the health dept/CDC didn’t have to count the case as confirmed Lyme). The speaking difficulty (not being able to remember word) and cognitive disfunction got more severe. (Like writing this account would have been impossible.). They gave me 14 days of doxycycline. Cured... NO, so I tried to accept my new normal of no energy, cognitive lapses, and arthritis throughout my body as my lot in life.

Then a friend suggested a LLMD doctor and I went to one near me. The blood tests were done and I tested “wildly positive” for Lyme. Treatment of 28 days of Doxy began and I felt some better. Then a course of two antibiotics followed. The treatment was harsh and I was sick (Herxing) daily on it. But still I felt 60% better and I Was grateful. Then I showed the LLMD the massive bruises on my legs and arms (had this since childhood) and a sore that wasn’t healing. Diagnosis? Secondary Lyme infection .. and this time the doctor tried a new trial - the WEIGMAN protocol. I remember it was just before Christmas and I decided to wait until after the holiday and I was tired of being sick everyday from the meds. The protocol was cheap and effective, It gave me back my life.! It was a pulsed Mindi / Tindi antibiotic that has proven studies that show a complete kill of spirochetes over others that foster the formation of round cysts. (you know the ones that hatch out after the antibiotic cure and then multiply so you stay sick). It included boosting the immune system before starting it, to allow your body to fight along with the meds.

So my advice is:

  1. Change the CDC recommended 14-28 day doxycycline treatment to Weigman Protocol.
  2. Recognize that Lyme disease not addressed or under-treated will resurface when your body allows the remaining spirochetes to multiply.
  3. Encourage doctors to think “advanced” Lyme disease when seeing a patient with diseminated migrans rash, joint pain, thyroid disorders, MS, Parkinson like symptoms and temperature of 97.
  4. Order health departments to count all cases of diagnosed Lyme even without a blood test (you see the test is so unreliable docs aren’t bothering to do it) - so we have no idea the number of cases. Keep in mind over a million dogs are diagnosed every year in the US.

Rhonda Howdyshell
Global Lyme Alliance Education Ambassador
Shenandoah Valley of Virginia

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 in preparation for its July 8 meeting at which it will review the draft 2020 report to the Secretary of Health and Human Services and Congress, and review and approve graphics and images for the report. IDSA strongly urges the Working Group to ground all its recommendations in the best available scientific evidence.
IDSA is the largest infectious diseases medical society in the United States, representing more than 12,000 physicians, scientists, public health practitioners and other health care professionals specializing in infectious diseases. Our members care for patients of all ages with serious infections, including tick-borne diseases. IDSA members focus on the epidemiology, diagnosis, investigation, prevention, and treatment of infectious diseases in the U.S. and abroad. We have sincere concern for patients who suffer from both short- and long-term effects of Lyme disease and other tick-borne diseases, and our goal is for all patients to achieve the best possible outcomes. We would be happy to serve as a resource for any issues surrounding tick-borne diseases.
IDSA is commenting on the following recommendations of the Federal Inventory Subcommittee, discussed at the April 27, 2020 Working Group meeting:
  • “Recommend that if the CDC posts any Lyme disease treatment guidelines, that they include guidelines on persistent Lyme disease.”
    • IDSA continues to support the use of evidence-based treatment guidelines to improve patient care and the management of Lyme disease. Epidemiologic studies to evaluate currently undefined or poorly defined entities, such as persistent Lyme disease, should be considered. IDSA urges that any guidelines posted by CDC be based on well-designed clinical and experimental studies on Lyme disease and other tick-borne diseases reported in peer-reviewed scientific journals in order to produce the best outcomes for patients and prevent unnecessary harm. 
  • “Recommend that the VA continue with Recommendation 8.4 from the 2018 Working Group report, “Commence study of tick-borne disease incidence and prevalence of Veterans and eligible family members” and additionally:
    • Establish and update efforts on tracking and investigating the prevalence of Lyme and other tick-borne diseases; and
  • Make educational modules available to practitioners.”
    • IDSA continues to support the study of incidence and prevalence of tick-borne diseases in all populations. This recommendation presents an opportunity for the Department of Veterans Affairs to study veterans and their families to better inform patient care and management of tick-borne diseases for this population.
  • “Recommend that the NIH create one or more study sections composed of members whose expertise is human clinical diseases and their pathogenesis and immunity, not just basic science, to evaluate applications focused on practical impact on human health related to tick-borne diseases.”
    • IDSA supports diverse and inclusive study sections to improve the quality and breadth of research into the human health impact of tick-borne diseases.  
  • “Recommend that NIH receive additional funding, which must be dedicated to study Lyme disease, including persistent Lyme disease, and other tick-borne diseases and conditions; NIH to encourage researchers to apply for these studies.”
    • IDSA continues to support additional funding and research to better inform the diagnosis, pathogenesis and management of Lyme disease and other tick-borne diseases and supports clinical trials and epidemiology studies designed to better understand these diseases.
  • “Recommend that the DoD enhance communication and inter-agency collaboration to study tick and tick-borne diseases.”
    • IDSA supports continued inter-agency collaboration in the study of tick-borne diseases.
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 and to not allow anecdotal evidence or research from poorly-designed studies and ad hoc reports to be used as citations either in the reports or in any other documents produced by the Working Group. 
Relying on anecdotal evidence to support prolonged antibiotic treatment or other therapy for the treatment of Lyme disease is inappropriate, ineffective, and has been shown to cause harm to patients.
IDSA thanks the Working Group for its attention to tick-borne diseases and looks forward to the opportunity to help inform and advance evidence-based policy that will best serve the interests of patients and public health.

Francis Ingemi

Hello all,
I contracted Lyme while in the service in 1980 when I was only 20. I was bitten by a tick during my outdoor National Guard training.  My debilitating symptoms were dismissed for years by doctors who said I was too young and healthy.  They told me that it was all in my head!  [redacted] finally diagnosed me with Borrelia, Bartonella and Babesia in 2018 when I was 58.  With her help, I have made some good improvements.  Even so, I still have awful muscle cramps, joint pain, burning in my feet, and anxiety every day...and insomnia every night.  For 40 years, I have been enduring these problems and many more.  Lyme also forced me to close my automotive business and retire early.  For the government to deny the existence of chronic Lyme is a horrible insult to those of us who are suffering.  Please help us find a cure!
Thank you
Francis Ingemi
Boston, Massachusetts


Hello, I am writing to set the record straight about chronic Borreliosis. It exists and has existed for decades, probably even hundreds of years. 82% of the people with tick borne disease are people with Lyme disease, so it is most important to address the concerns of the many. Chronic Lyme continues to disable people, keeping them from working and being productive members of society. It also creates hardships on the individual and their families and friends.
The symptoms range from mild to disabling and from neurological to musculoskeletal. There is no part of the body this bacteria cannot invade and damage- and it does!
I have been disabled for about 30 years with this disease, but I contracted it well before then. And back then, Lyme disease was not a medically known entity, so I suffered with one issue after another that no MD could diagnose.
I have been near death twice with this illness, each time being returned to the living by high dose, long term, intravenous  antibiotics.
I know you have heard all that I have to say many times over, by many other afflicted individuals, so I will keep it short, but my brevity should not be construed to mean that it is less important.
I am still struggling to get my taxes done, thank goodness for the Covid -19 extension to July 15th. I hope I can meet that deadline, but I am so fatigued, so tired. It seems like a monumental task.
In closing, I am asking you to continue work on Lyme disease/Borreliosis. It is true the co-infections also need addressing, but Lyme disease presents a much greater societal and personal problem and must be continuously studied until useful information that can put this disease to rest becomes available.
Kind regards,

Andrea Jackson


The Lyme community is very disappointed by multiple actions, or lack of action, by this year’s TBDWG voting members. These include the following.

  1. The TBDWG leadership assigned Shapiro, known to work AGAINST the interest of Lyme patients for DECADES, not only to the committee in a voting role, but a role that was meant to be reserved for a patient advocate.  His placement on the committee ABSOLUTELY gave the feds total control of the committee’s nature and products. Patients were VERY VERY VOCAL about their displeasure with Shapiro’s assignment to the committee and we were ABSOLUTELY IGNORED- again.  Why would patients have any faith whatsoever that the TBDWG would produce anything that would benefit them, future patients, and finally an un-manipulated and un-corrupted future for Lyme medicine?
    • A fed even cast Shapiro’s vote for him. Is it that he would know how Shapiro would vote as he was placed in a patient vote so feds totally control the TBDWG?
    • Why else besides seeking control would a person known to be in such disregard by patients be put onto a committee despite the patients’ protests?  
    • The history of Lyme disease medicine is filled with such corruption and manipulation that yet another “oops” or “mistake” can not explain this great insult to Lyme patients by a working group that is suppose to work FOR the patients. (There is NO way that it can be said that Shapiro was just a “bad tasting medicine” – one that was/is actually good for the patients).
      •      “Oops” or “it was an innocent mistake” can not explain- how those in charge of selecting members could possible not know Shapiro was one of the top 3 very worst selections for committee members if patients’ concerns were of any concern. 
      •      “Oops” or “it was an innocent mistake” can not explain - how those in charge of selecting members would think there could be any justification for absolutely ignoring the protests that patients loudly ‘voiced’ when the patients learned Shapiro was going to be possibly placed on the committee (it was not done in an open way – not open whatsoever - and protests were heard before the placement was finalized- TBDWG leaders still put Shapiro in to take a vote away from patients.
    • This move by TBDWG started this teams’ work off with a very loud indication that the voting membership would not be working for the benefit of patients- but instead be working to continue to cover up for decades of Lyme medicine corruption and manipulation.  Watching the voting members argue against and vote down very good subcommittee recommendations by using very faulty and incorrect logic and information has reinforced to patients that Shapiro's placement on the TBDWG was certainly not for the betterment of Lyme medicine or the lives of Lyme patients. 
  1. The TBDWG completely ignored the Bay Area Lyme study published this past year that shows the required CDC Lyme test gives false negatives to 71%? That is 7.1 out of every 10 tested.
    •  Patients and Lyme Disease doctors have been ignored for decades when they have reported that the testing fails.
    • TBDWG committee members have even said this year that they don’t see that there is anything wrong with the CDC-required testing.
    • The failings of the CDC-required Lyme test combined with the CDC telling doctors not to test (only in “high incident states” which, due to CDC’s other manipulations, means CDC ensured testing has only occurred in the states in which Lyme first appeared) . This equals – CDC has/ has had a No Test, Bad Test Agenda. 
    • This No Test, Bad Test Agenda has resulted in and continues to result in:   
    • Millions of patients being told they NO LONGER HAVE LYME WHEN THEY DO! CDC has pushed FALSE STATS for decades- Stats based on the results of CDC’s No test, Bad test agenda (requiring a failing test (71%!) & testing has been greatly influenced by doctors being discouraged & taught for decades- don’t test).
      • So many/most/all(?) CDC stats about Lyme are false 
      • Such as - where Lyme is and where Lyme is not – they don’t know.
      • Such as how many people become disabled from Lyme (how do you know if you don’t even know how many have or who has Lyme?).
      • Such as how many people get an EM rash
      • Such as Is Lyme passed from mother to child
      • Such as is Lyme passed between partners
      • Such as does the blood supply need to have accurate Lyme and co-infection testing applied to it to avoid giving non-infected patients Lyme and co-infections (why would that NOT be an issue given many have not been tested for the last ½ a CENTURY and of those that were, 71% were told they didn’t have Lyme or didn’t STILL have Lyme when they do!)
      • Such as symptoms or effects of Lyme that the CDC pushes as not-Lyme.

Its inconceivable that a working group that’s to represent patients would ignore such an important study as the Bay Area Lyme study that shows the CDC gives false negatives to 71% - showing 7.1 out of every 10 tested were told they don’t have lyme when they do, when known cases are also very low because doctors don’t even know they should test for lyme.  

  • Even after the 71% failure rate of CDC testing was published, the CDC representative on the TBDWG stated that acute Lyme cases matter more than persistent and that they matter more because there were more acute cases?  When 71% of patients have been told they don’t have Lyme when they do - for DECADES (and those were just those who were lucky to get tested after CDC pushed doctors not to test for decades) – there are obviously NOT fewer persistent cases! Lyme doesn’t just “go away!” And when Lyme is not identified, the effects are very severe (NOT LESS IMPORTANT THAN ACUTE CASES! 
  • No fed-TBDWG member questioned the CDC about their statement of - there being more acute cases than persistent cases and those acute cases matter more (Pat Smith objected to the latter at least, but no committee feds did).  If there are only 1 or 2 TBDWG voting members who can see how VERY incorrect that statement is, the others should not be appointed to act like they are representing patients’ best interest or seeking to further Lyme medicine. The others should not be allowed to continue the corruption and manipulation of Lyme medicine- a practice that has ensured millions become sick and disabled while the HHS and CDC ignore patients and their doctors. They have ignored patients and doctors while 1) suppressing all valuable research that points to the federal corruption of Lyme medicine and 2) ensuring no advances in Lyme medicine is made and 3) suppressing any research, information, and outreach that shows that the Lyme myths they have pushed for decades now are found to not be true.
  1. The federal voting TBDWG members continue to vote against very valid and good recommendations that would actually Finally make a difference to the lives and health of Lyme patients and the progression of Lyme medicine.
    •  One example of this is after the CDC-rep on the TBDWG kept saying the CDC can’t support providing VALID and TRUE information that would educate doctors about persistent or longterm Lyme impacts. So, they can’t provide information that would FINALLY provide accurate Lyme Disease information, including recognizing the health consequences of Lyme that they have pushed (for decades) don’t exist (when their doing so cost Lyme patients their health, disability insurance, social security disability, and the privilege of belief by family, friends, and the medical community)?  Even though for decades they provided IDSA guidelines on their website- guidelines that were and still only address acute Lyme. The rationale of the CDC as to why they can’t provide this educational information: “It will confuse doctors."
    • Lyme patients don’t believe the CDC’s other excuses for not being able to provide educational information about persistent lyme given the last 50 years of corruption & given the main reason the CDC provided was “It will confuse doctors.” When the CDC, HHS, and other federal members voted against several education-oriented recommendations prepared by a subcommittee with more experience and less ulterior motives than themselves – patients concern that Shapiro was added to the TBDWG to give the feds voting control of TBDWG were confirmed.
    • How are patients suppose to accept that a lame excuse like “it will confuse doctors” is what is keeping us from finally having the medical community educated about the truths ‘of Lyme’ after decades of CDC mis-information and mis-education?
  2. The federal TBDWG voting members (plus Shapiro) have repeatedly ignored pleas from patients to ‘please finally investigate and put an end to the corruption of Lyme medicine!’
    •  For federal members to just express there is a need to focus on the future and not try to deal with the mistakes of the past is 1) a cop out and 2) ensuring the mistakes (aka corruptions) of the present and the past are going to continue to corrupt Lyme medicine and keep it from advancing- as they have for ½ a century!
    • Lyme patients know the same individuals have been controlling and manipulating Lyme for the last 50 years.
    • Lyme patients know that the case definition that defines “what Lyme is” was altered for the sake of a bad and failed vaccine – and was never fixed after that vaccine failed (because then the corruption (case def changed) would become more obvious?).
    • Lyme patients know that testing and guidelines were altered for unscrupulous reasons. (Anyone who doesn’t know that can review the Torrey Lyme case- which involves allegations of 6 ‘researchers” and the IDSA (yes the same org that prepared the guidelines that CDC for decades) being PAID by health insurers that did not want to pay patient claims. Patients also know that 4 insurers are actually settling in this case! Why has this been ignored by the TBDWG! It shows that all the supposed Lyme “facts” were not pushed because they were true but because doing so saved health insurers money as the myths made/make it so they do not have to pay for Lyme patient treatment!
    • Lyme patients know that a man who should have been convicted of WWII war crimes was in charge of a bioweapons lab that did research on tick borne diseases after WWII and the senate conveniently decided that the public and patients would not learn what was done to and with Lyme disease in that war criminals labs. 

WHY HAS THE TBDWG NOT CALLED FOR ANY INVESTIGATIONS ON ANY OF THESE THINGS?  If its claimed these things are not true, still- call for them to be investigated so VALID proof of their being false (or actually true) can be shared with the lyme community.

Patient’s want the TBDWG to call attention to the fact that for a ½ a century, the HHS and CDC has: 

  • ENSURED that millions go undiagnosed and become very sick and disabled, have to live in pain and extreme discomfort most minutes of every day, for years, have their health destroyed by Lyme;
  • ensured patients don’t learn they have Lyme until its too late;
  • ensured Lyme medicine remains unable to treat or cure Lyme since  the CDC and others have suppressed research and treatment for decades);
  • ensured patients lose their ability to work and support their families, lose important relationships and self-identity and respect, and become ostracized by the public and the medical community; 
  • all thanks to CDC propaganda – their pushing false theories and studies about  Lyme being “rare and easy to cure”- which it seems, based on the Torrey Case, has been pushed so big health insurance companies don’t have to pay Lyme patients health claims.

How do patients have any faith in a working group that wants to and continues to ignore the very forces which have corrupted and manipulated and continue to corrupt and manipulate Lyme medicine? The consequences of the TBDWG ignoring the present and past corruption of Lyme medicine are, NO REAL ADVANCEMENT of lyme medicine are going to result from the TBDWG reports to congress. 

I am a Lyme patient. I went 7 years without a diagnosis and without help. I am now 10 to 12 years into living and suffering through Lyme’s impact. Lyme destroyed my immune system, exactly as whistleblowers have explained ‘is what Lyme does’. Why does the CDC, HHS, etc, or now the TBDWG, not listen to the informed whistle blowers and actual lyme experts and doctors with years of experience with thousands of patients?  Why do they not listen to the patients themselves? Letting us send in comments apparently results in no benefits for us – just provides false hopes for a few. 

I know from a decade of personal experience that Lyme does destroy whatever system or organ it gets to and eventually the immune system. That IS WHAT LYME DOES. How is it that the so called federal agency experts are allowed to continue to deny that is what Lyme does and that Lyme is not rare, not easy to cure, and by no means only a slightly inconvenient illness. Based on my own personal experience, Lyme eventually makes the immune system deficient and what is left of it “goes crazy” and causes many different symptoms that doctors who have only heard the CDC misinformation for years are only confused by. Once Lyme has damaged the immune system to a certain extent, the damaged immune system sends pain signals, yet no federal TBDWG member knows or admits this.  How many painful illnesses are actually caused by Lyme and its impact on organs, systems, and/or the immune system?  There are several God-sent immunologists and other specialists who understand immunology and Lyme’s impact on the immune and other systems.  Those doctors aren’t hiding under a rock. For years, they and patients have been telling the HHS and CDC about their knowledge, and just as the CDC and HHS have ignored us, so too is the vote-controlling portion of the TBDWG.  

Patients are multiplying. We are many. And as we grow in numbers, we grow in strength – the strength to convey to the public how corrupt Lyme medicine and politics have been for the last 50 years.  With the corvid 19 pandemic, more and more people are understanding the corruption of the medical-government arena. Those people are listening, and we are talking. If any potential whistleblower is actually reading this comment- PLEASE blow that whistle, please do the right thing, be on the right side of the history of Lyme medicine- the truth will be coming out soon. The manipulation of the 2020 report by those controlling the TBDWG will not be allowed to go un-exposed.

Andrea Jackson
Weld County, Colorado

Bryan Jones

Five years ago I was visiting a local state park measuring trees for a class I was taking at a local university. A few days later I found a tick attached to the back of my leg. I pulled it off and thought nothing more over it. Little did I know that would be the end of "normal" life as I knew it. Previously, I worked as an Intelligence Analyst for the U.S. Air Force/TN Air National Guard. Persistent Lyme symptoms forced me out of full time work two years ago. Eventually it forced me out of the military and work altogether about a year ago.

It took many months for me to get diagnosed and treated with the standard CDC approved length of Doxycycline. Continuing symptoms after led me to seek a LLMD. Since then I have treated with long term antibiotic therapy, herbs, and most recently Disulfiram. Improvements have either been short lived or minor. Continuing illness forces me to look into unapproved, expensive, and potentially dangerous alternative treatments.What other choice do I have? The government's refusal to recognize persistent Lyme has created a situation where patients are forced to pay out of pocket for treatments that have a high potential for failure with money they don't have. 

Because of persistent Lyme the U.S. military lost a talented Intel Analyst. Because of persistent Lyme a life has been devastated by illness and financial stress. How many similar stories exist in this nation? Please start funding research towards better diagnostic tests, treatments, and insurance coverage for those ill with persistent Lyme.

Thank you

Bryan Jones
Nashville, TN area.

Jennifer Kenley

As a patient with Lyme Disease, and Ambassador for the Global Lyme Alliance, it is difficult to put into tangible words what I want to convey to your team.  The Lyme community just lost one of our greatest advocates this past week (as of June 24th), Dr. Neil Spector.  Following your last meeting, I know that I speak for many Lyme patients when I say that we are deflated, crushed and incensed by things that were said.  Most pointedly at Dr. Beard’s disregard for two million lives (“Post Treatment Lyme Disease” patients). The CDC’s guidelines have and continue to fail the Lyme community shamefully.  I know this personally, I have done the CDC’s Doxycycline regimen and am left with almost no immune system (after years of “PTLD”), terrible arthritis, ongoing night sweats, heart abnormalities and debilitating brain fog and loss of memory.  I am 33 years old, crying over my 5-year-old son at night because there is nothing else that can be done for me because of this “guideline”.  In September we had to sell our house to pay medical debts, because again, thanks to the CDC’s guidelines my continued treatment is not covered by insurance.  There have been NUMEROUS studies indicating that Lyme disease can hide in the joints and that people are affected for years despite these Doxycycline doses (Please see Tulane and John Hopkins studies). Many suggest a three-antibiotic cocktail and others, like Dr. Sapi (New Haven) propose enzymes and drugs to break down biofilms in remaining bacteria to enhance antibiotics.  To be completely candid, myself and a lot of others in the Tick / Vector Bourne Disease community lack faith in the ability of this group to make empathetic, fact-based decisions on our behalf.  We have seen advocates that we trusted leave this board and it is disheartening at the very least.  With Lyme now in all 50 states and enough PTLD patients to fill the city of Chicago, this can no longer be ignored.  We are pleading with every one of you to revisit and amend the CDC guidelines. For those unwilling to bend, please put aside your conflicts of interest and stand on the side of history that fights for humanity. 
My life (and my 5 year old’s) is (are) in your hands,
Jennifer Kenley 
Global Lyme Alliance


As a Social Worker, I have a deep appreciation for evidence-based practices, peer-reviewed research, and the importance of providing people with the tools needed for self-advocacy, self-determination, and empowerment. I am also keenly aware of the subtle nuances that can be conveyed through written and verbal communication, especially as it relates to trauma-informed practice. 

Overall, I believe our society has adopted a somewhat disdainful perception of Lyme disease, which has a significant impact on the mental health of people with Lyme disease. After countless experiences of invalidation, not only from individuals, but also from medical professionals, the media, and even the CDC and NIH, people with persistent Lyme disease are aggrieved but weary. We can barely muster the energy to advocate for ourselves, let alone make a simple request: please stop marginalizing us; we need acknowledgement and assistance. 

The ongoing debate about whether persistent Lyme disease is “Chronic Lyme” or “Post-Treatment Lyme Disease Syndrome” is counterproductive and merely perpetuates the “Lyme Wars”, placing undue burdens upon patients. The debate about long-term antibiotic treatment is similarly ineffectual, especially in the absence of alternative treatment recommendations. 

There is currently no information regarding treatment of any form of persistent Lyme disease or Post-Treatment Lyme Disease Syndrome on the CDC or NIH websites. In fact, the overall tone of these websites seems to dissuade people from educating themselves about their symptoms and experiences, rather than providing resources, information, and support. This seemingly simple act of exclusion possesses a more sinister subtext: people with persistent Lyme disease symptoms do not deserve to remain informed, retain the ability to engage in thoughtful discourse with their medical professionals, or actively participate in their treatment decisions. 

The NIH website mentions PTLDS briefly, acknowledging that a minority of patients may continue to experience symptoms despite showing no evidence of active infection, but does not provide any additional information. While the NIH published a great deal of information in their 2019 report, including a detailed list of recent advances in scientific research, the only mention of persistent Lyme comes in their acknowledgement that ongoing infection cannot definitively be excluded. If a layperson were to visit the website in search of information, they would not find any helpful resources. However, they would quickly find themselves inundated with information and resources regarding the dangers of long-term antibiotic treatment. The NIH website refers to long-term antibiotic treatment as “unhelpful and dangerous” but does not provide any information regarding alternative treatment options for persistent Lyme disease. 

The CDC website is even more disheartening. The website states the cause for PTLDS is unknown and there is no proven treatment for PTLDS. However, there are dozens of links to articles and research studies outlining the dangers of long-term antibiotic treatment. The first article, which immediately catches the eye, is titled Internet-Based Self-Diagnosis of Lyme Disease Caused Death in a Young Woman with Systemic Lupus Erythematosus. There is also a brief vignette video titled Feeling Worse After Treatment? Maybe It’s Not Lyme Disease, in which a man named Robert discusses the impact of being misdiagnosed with Lyme disease. This video seems especially thoughtless and insensitive, given the number of Lyme disease patients who experience prolonged suffering due to years of misdiagnoses. 

The choice to exclude information, resources, and treatment recommendations for persistent Lyme disease from the CDC and NIH websites, and to instead provide a variety of reasons to invalidate “Chronic Lyme” and long-term antibiotic treatment, is painfully obvious. Rather than spending valuable time and energy vehemently denying the existence of continued active infection or denouncing the efficacy of long-term antibiotic treatment, why not focus on the facts that are evident: 

  1. Each year, approximately 300,000 people are infected with Lyme disease and co-infections (https://www.cdc.gov/lyme/stats/humancases.html).
  2. Approximately 10-20% of treated patients continue to experience symptoms of fatigue, musculoskeletal pain, and neurocognitive impairments  (https://www.nejm.org/doi/full/10.1056/NEJMe1502350).
  3. Therefore, each year, approximately 30,000-60,000 people continue to experience persistent symptoms of Lyme disease and co-infections. 

Unfortunately, I am one of those 30,000-60,000 annual cases of persistent Lyme disease. For the past decade, I have experienced debilitating symptoms of fatigue, joint pain, neurocognitive impairments, weakened immune system, and many others. Last year, my symptoms became so severe that I had to quit my job. Like many others, I have been closely following the actions of the TBDWG from home. 

Excluding persistent Lyme disease in the work of the TBDWG goes against the very mission of the TBDWG: to provide expertise and review all HHS efforts related to all tick-borne diseases, to ensure interagency coordination and minimize overlap, and to examine research priorities. 

If some form of persistent Lyme disease is not included in discussions of the Tick-Borne Disease Working Group, hundreds of thousands of people with Lyme disease will continue to go unheard, unrepresented, and unvalued. People who have been suffering for decades will hear your message loud and clear: we still do not believe you; your experiences are not valid. 


Melissa Leavell

I have probably had tick-borne disease since I was born, but I led a fairly normal life from 1952 until 1998. At that time I became disabled with chronic Epstein-Barr, and had to discontinue my career as an Environmental Scientist. Treatment with antivirals did not help very much, but tens of thousands of dollars spent on several types of alternative treatments enabled me to have a few productive hours most days.

Around 1998 I got a laptop computer and began to read research on the symptoms I was experiencing. I persuaded an open-minded doctor to test me for several pathogens that could be the cause and tested negative for them all except lyme disease. I got some treatment but several months of antibiotics was not very helpful. An Infectious Disease specialist persuaded me I didn't really have lyme disease, and I stopped treatment for a couple of years.

Another doctor tried a different type of lyme test, and that was positive too, so I went back on antibiotics for several years, with some improvement, but not a cure. I eventually spent several thousand dollars on a famous lyme-literate doctor, who wanted to verify the lyme for himself, and also test for some other tick-borne infections. The lyme PCR of serum was positive, although there were only a couple of positive bands on the western blot. He considered them significant, and since a positive PCR is the gold standard for diagnosis of ANY pathogen, he diagnosed me with lyme. He also diagnosed babesia duncani based on an antibody test. A few years later I also tested positive for bartonella henselae.

Many years on antibiotics and antimalarials did not produce a cure, but at least I haven't deteriorated or died like so many others who couldn't afford to treat their lyme. 

How the doctors on the Working Group who deny the existence of chronic lyme can continue to do so in the face of so much evidence is something that brings to mind words like evil, immoral and corrupt. You have ruined tens of thousands of lives and caused immeasurable suffering. I doubt anything I could say would influence you but I wanted to add my disapproval of your work to the thousands of others who like me, are home in bed, in pain, and exhausted. Shame on you!

Melissa Leavell
Chicago, IL

Amy LeBoeuf

My name is Amy LeBoeuf, and I would like to focus on one of the edicts of the Tick Borne Disease Working Group….’prevention’ of tick-borne diseases.
No one sector of health has all the answers to this complex problem of vector borne disease, and it requires a trans-disciplinary approach to address it. A One Health approach must be utilized to research, prevent, diagnose, and treat Vector Borne Disease. One Health looks at health through the lens of the interrelationship of human, animal, and environmental health.  I have personally experienced the benefits of physician scientist, Dr. Bob Mozayeni, and veterinary internist and vector-borne disease researcher, Dr. Ed Breitschwerdt working together in a collaborative One Health approach that shares knowledge from the human and animal health worlds to solve complex disease using comparative medicine and translational research perspective. There is no doubt that this approach can save lives. In fact I wanted to bring to light the bipartisan and bicameral Advancing Emergency Preparedness Through One Health Act (https://tinyurl.com/y7zazlou). “This bill requires the Department of Health and Human Services and the Department of Agriculture, in coordination with other specified agencies and departments, to develop, publish, and submit to Congress a national One Health Framework for coordinated federal activities under the One Health Program, which encourages collaborative efforts to help better prevent, prepare for, and respond to zoonotic disease outbreaks.” Until there is a national One Health framework that allows for collaboration to address issues like vector borne disease, even simple measures like designing a patient intake form from a One Health perspective can help prompt patients to recall potential exposures and physicians to better understand patient risks through environment, pets, occupations, and outdoor activities. A simple tool like this could help physicians and patients alike think more critically about the daily risks and exposures and could help determine when flu-like symptoms may not be just the flu.
As a K12 educator of 20 years, and after having been personally affected by vector borne disease, it has become frighteningly apparent that my students know nothing about the risks that fleas, ticks, and other vectors pose; nor do they know how to protect themselves.  According to the CDC, “between 2004-2016, the number of reported cases of disease from mosquito, tick, and flea bites has more than tripled.  Lyme Disease cases account for 80% of tickborne disease cases, with children most at risk. Each year, at least 300,000 people in the U.S. are diagnosed with Lyme disease. 25% are children, ages 5 to 9. That is at least 200 students every single day. 
The medical community acknowledges that 5-20% of Lyme patients develop chronic symptoms that can be disabling including profound fatigue, pain, and/or cognitive impairment.  If this happens in children, not only can these symptoms impede attendance and learning, but these children will be at risk for developing depression and anxiety as they fall behind in school and become increasingly more isolated due to their functional limitations. I have seen this with my own eyes. 
I have searched for resources to help teach my students about preventing vector borne diseases, and realized that there isn’t much available;  and then I figured out why. There is no mention of prevention strategies for vector borne or other zoonotic diseases in our K12 National Health Education Standards. According to the CDC, these standards were developed to establish, promote, and support health-enhancing behaviors for students in all grade levels— They provide a framework for teachers, administrators, and policy makers in designing or selecting curricula, allocating instructional resources, and assessing student achievement and progress.”  But the current National Health Education Standards do not take into account the profound increases in vector borne disease that we are currently experiencing which leaves our children incredibly vulnerable. Children are losing their childhoods. We absolutely MUST do better. 
As Chair of the US One Health Education Task Force, from my own experience, I strongly believe that students could and should receive a more comprehensive understanding of health.  That could be accomplished by incorporating a One Health perspective into the National Health Education Standards. The current standards do not explicitly address student education about ticks and other vectors, vector borne disease prevention strategies, nor the conceptual understandings of how our human choices can impact our environment in ways that can directly affect the geographical range of these disease carrying vectors. Yet education is the ‘key’ to preventing the tragic outcomes of vector borne diseases.  
We want our students to become adults who think critically, who understand factors that increase health risks, and who are armed with disease prevention strategies for life in an ever-changing world.  What children learn through K12 Health Education not only protects them now but establishes their attitudes and health habits as adults which they subsequently can instill within their own families. The One Health concept about our inter-connectedness with animals and with the environment could easily be incorporated into the National Health Education standards and into classrooms around the country. Without this action we leave our most vulnerable population--our children-- and future generations at risk.
There is an immense amount of work to be done in research for diagnosing and treating tick borne diseases; but educating students and teachers about tick borne diseases is an easy way to help prevent them-- and it must start now! 
There is still much confusion surrounding tick and other vector borne diseases. What is ‘not’ confusing is the critical need to ‘prevent’ them. We must educate students and teachers about these diseases and how to prevent them. I implore you to join us in addressing this vulnerability by including in your recommendations that One Health be incorporated into the National Health Education Standards to teach children about Zoonotic and Vector Borne Diseases including basic vector biology, vector borne disease prevention strategies, and a conceptual understanding of how human behaviors contribute to expanding vector terrains and subsequently more sick people. 
Prevention of tick-borne disease is a major focus of this committee and arming students with this knowledge is a powerful way to prevent tick-borne diseases. 
I would be happy to answer any questions and would welcome a chance to visit with the Joint Committee on National Health Education Standards as well as the Tick-Borne Disease Working Group about what urgently needs to, can, and must happen.
Amy LeBoeuf
Founder/Director, Louisiana One Health In Action
Chair, One Health Education-US (OHE-US), One Health Commission 
Facilitator, 1HOPE- Primary/Secondary- Americas Working Group

Jennifer Leon

I have been misdiagnosed since age 5. At the age of 5 (1975), after quite a bit of time, complaining to my mother about the pain in my ankles as well as always having her or ANYONE rub my body and always asking them to rub harder, my mom finally took me to see a doctor. I remember the exact spot I was standing when she told me. It was outside, I was standing by our back porch in Fredonia, Pennsylvania. I remember feeling relieved, excited and finally taken seriously.

This started with all kinds of tests, which resulted in me staying in the hospital for 2 weeks during my kindergarten days. I was poked daily with all kinds of tests. One needle I'll never forget was the one in my ankle. I. remember the nurses explaining they wanted to see if any fluid came out. That needle hurt so bad and I still have the mark in my ankle. Well, after being in the hospital, crutches, casts, and I can't recall the time after that, I was finally diagnosed with Rheumatoid Arthritis and told I would grow out of it.

Fast forward throughout my teenage days of cheerleading and sitting out games b/c I could not function, or not participate in other events because I was in too much pain. Then heading into college, where again, as a cheerleader, sitting out games and spending days in bed because I ached so badly.

Fast forward again when I would start my career. My first career was banking. There were days I couldn't even move my hands to type on the keyboard. Interestingly, I still speak with my boss back then and we discussed this and she remembered how much pain I would be, and how others would help close out my drawer because I hurt too badly.

Throughout my young adult life, I continued to have pain - flare ups. To me, I thought it was just arthritis. This was before google, but, I would read RA articles or listen to others with the same diagnosis (typically over the age of 65), my description was different. But, I continued to see Rheumatologists after Rheumatologists and they would continue to hand me every NSAID on the market. Nothing worked. By the way, the minute you would tell a general practitioner you were diagnosed with RA, they immediately send you to an RA specialist. While several RA Specialists were perplexed, I'd get the response "Well, you can be symptomatic without the bloodwork really showing it... here's another drug to take". I then was sent back to my primary care physcian who would then go on and try all the latest anti-drepression and anxiety meds. I remember telling her "Hmm, I don't feel depressed", but, I got prescribed whatever the latest pharma rep pitched in the office. None of this changed the tingling in my hands and feet, the full body aches, the direct pain in my hands and ankles, the flu like symptoms, fatigue.

As I approached my late 20s, I gave up on all doctors and frustrated that no one could tell me what was wrong with me - other than RA, even though nothing I read or heard sounded the same. I'd continue to have flare-ups, missing work, not able to lift my son out of the crib and other things I couldn't do because of the pain. I used to tell people "Just cut off my legs and arms and the act of cutting them off would actually feel good". During this time, I moved from Pittsburgh to Yardley, PA, until 2010.

Now with my husband and my two kids, (4,9), we moved from Yardley, PA to Parker, CO. My pain increased over the next couple of years - again - the same flu-like symptoms, the aches, the tingling and fatigue. Until 2012 when I couldn't get out of bed.

I was typically outgoing, energetic (when I wasn't flared), and would go the minute I had the chance to never leaving my bed. I had some work trauma happened which led me to a therapist with MS. I explained to her that I had to sit walking up our stairs to the 2nd floor 1/2 way up b/c it felt like I couldn't get air into my lungs. I thought it was altitude or 'old age' (42 at the time). I was on my journey again to figure out what was wrong - and yes, I went to see another RA specialist, who confirmed that I in fact, did not have RA, and pretty much assured me that she didn't believe I ever did. This functional medicine doctor who the therapist referred me to (bc she had other patients go there when other doctors had no answers and go them).

The first appointment was $500, plus $5000 for the next several months to figure out what was wrong. This amount didn't include supplements and other testing. When the doctor pieced things together and learned I was from Pennsylvania, he immediately recommended doing a lyme test. After $800 plus an additional $400 for co-infections, my results came back Igenix positive. I was diagnosed with Borrellia, Babesia and Bartonella.

This doctor did not treat lyme, so I had to search for someone that would. I got on the waitlist for the 2 MD/DO's in Colorado. But, was able to get into [redacted] outside of Kansas City, MO. We began my treatment - along with another $5000+.

I eventually was able to get into one of the physicians in Colorado, [redacted]. With his 3 years of treatment, along with adding other modalities - acupuncture and more, I finally was functioning again. While I knew I'd never get 'me' back, I wanted to and I fought to. I eventually stopped treatment and began maintenance.

I have averaged $10,000/year out of pocket for the first 3+ years of treatment. Since then, I continue to invest in my healing - averaging $500/month in support and supplements. I still have flare-ups - Last week, (June15th) I was bedridden all week. Fortunately, I have a job where I work from home - and I have a boss who also has long-term chronic lyme disease. I've been able to keep my job out of survival to help pay for this disease. I still have all the symptoms, but, my flare-ups aren't as often and I am functioning at 85-90% of capacity.

I beg you to give the attention and support to this disease. Since the age of 5, now at 49, lyme has impacted how I lived. It's a financial burden and it has prevented me to have a fully vibrant life. I've missed everything from career opportunities to my kids events. My kids have had to watch me be bedridden for days, not able to prepare meals or take them to practices. It's not all in my head. While I don't look sick, I am sick. I am thrilled to be functioning again, but it's daily management and maintenance to keep it up.

It pains me to see others going through the same thing, and realizing not much has changed since I was a kindergartener in 1975. We need better testing, better support, known treatment options, insurance coverage and so much more. Lyme and other Tick-Borne Diseases need to have the support, research dedicated to help the millions who struggle daily.

Thank you,
Jennifer Leon

Elizabeth Maloney

The odd behavior of the working group during the April 27, 2020 meeting with regard to the recommendation that “if the CDC posts any Lyme treatment guidelines, that they include guidelines on persistent Lyme Disease” concerns me. For that reason, I offer the following comments in support of the recommendation.

As one of the authors of the International Lyme and Associated Disease (ILADS) guidelines,1 I encourage working group members to study the ILADS guidelines and render their own judgment regarding their validity. The guidelines were transparently produced under the Grading of Recommendations, Assessment, Development and Evaluations (GRADE) system and conform to the National Academy of Medicine standards for trustworthy guidelines and until its recent demise were listed on the National Guidelines Clearinghouse. They were rigorously peer-reviewed and published in a journal not controlled by our medical society. Although faulted by some for making treatment recommendations on low or very low-quality evidence,2 we utilized the same trial evidence as the Infectious Diseases society of America (IDSA)3 but reached different conclusions regarding the strength of that evidence. In our view, their inflation of the strength of the evidence cannot be supported. We are not outliers in determining that the evidence quality was low or very low; other GRADE-based assessments, including the exquisitely detailed National Institute for Health and Care Excellence (NICE) assessments and another by Centers for Disease Control and Prevention (CDC) epidemiologists also found that the evidence was of low or very low quality.4,5

The low quality of evidence reflects the existing evidence base in Lyme disease, which is inadequate. Despite the high incidence and severity of Lyme disease, little research has been done regarding treatment of those with persistent manifestations of Lyme disease. The result has been a stagnant research environment— in the US, only three grants have been funded by the National Institutes of Health (NIH) to assess treatment response in patients who remained ill after a short course of antibiotics—the last was funded over 20 years ago.

It is important for working group members to recognize the growing body of evidence that documents, via positive culture and/or PCR, persistent infection in humans following antibiotic therapy, evidence which is discussed in detail in ILADS’ paper on chronic Lyme disease.6 Working group members should consider the evidence provided by the National Institutes of (Health NIH) xenodiagnostic study7 and the work of Feng et al, which now includes a mouse model of persistent infection, suggesting the need for antibiotic combination therapy.8-10

The value of antibiotic retreatment has been demonstrated in EM trials conducted in Europe and the US,11-16 in the Logigian studies of chronic Lyme disease and Lyme encephalopathy,17,18, and the randomized controlled trials of antibiotic retreatment by Krupp and Fallon.19,20 When considering the findings from the retreatment trials, it is important to note the trials’ limitations - reliance on average treatment effects, small sample sizes (ranging from 37-129), and the exclusion of over 89% of patients who sought to enroll.20,21 Additional issues of trial design and the interpretation of the results have been highlighted by others.22,23 As a result, the trials’ findings and conclusions are not generalizable to most patients seen clinically, and are too small for subgroup analysis which would permit more targeted treatment approaches. While it is true that neither Krupp nor Fallon made a generalized recommendation for IV ceftriaxone in this patient population, both found the improvement in fatigue encouraging and recommended additional studies of less expensive and invasive therapies.19,20 Furthermore, in a subsequent paper, Fallon supported the use of antibiotic retreatment on a case-by-case basis.23

Evidence-based medicine is defined as “the integration of best research evidence with clinical expertise and patient values”.24 In the absence of high-quality evidence, evidence-based medicine holds that therapeutic decisions should strongly consider clinician expertise and patient values.24 The National Academy of Medicine (NAM) reaffirms the role of clinical judgment and patient preferences, as does the widely used evidence assessment scheme, GRADE.25,26 As NAM notes, conflicting guidelines most often arise when evidence is weak, organizations use different assessment schemes, or when evidence developers place different values on the benefits and harms of intervention.26

Such is the case here. Using the same evidence base, the IDSA overstates the quality of the evidence and based on its values provides no care for patients who remain ill. ILADS recognizes the heterogeneity of patients’ prior treatment history, ongoing manifestations, comorbidities and therapeutic responses as well as the heterogeneity of their values and goals but the IDSA does not.1,3 ILADS and NICE guidelines share concerns about the limitations of the current testing, the low quality of evidence, and recognize the role of clinical judgment when assessing whether to treat or to continue treatment.1,4 The ILADS guidelines encourage clinicians to individualize care by engaging in shared decision-making with their patients and to closely monitor patients during retreatment, adjusting therapies when necessary.1 Perhaps this is why only 6% of US patients with persistent Lyme disease report being treated by IDSA clinicians,27 with the rest choosing to be treated by clinicians who are more willing to provide further treatment utilizing innovative approaches.

Elizabeth Maloney, MD

  1. Cameron DJ, Johnson LB, Maloney EL. Evidence assessments and guideline recommendations in Lyme disease: the clinical management of known tick bites, erythema migrans rashes and persistent disease. Expert Rev Anti Infect Ther. 2014;12(9):1103-1135.
  2. Naktin JP. "Late You Come: Legislation on Lyme Treatment in an Era of Conflicting Guidelines". Open Forum Infect Dis. 2017;4(4):ofx152.
  3. Wormser GP, Dattwyler RJ, Shapiro ED, et al. The clinical assessment, treatment, and prevention of lyme disease, human granulocytic anaplasmosis, and babesiosis: clinical practice guidelines by the Infectious Diseases Society of America. Clin Infect Dis. 2006;43(9):1089-1134.
  4. National Institute for Health and Care Excellence. [L] Evidence review for the management of ongoing symptoms related to Lyme disease. https://www.nice.org.uk/guidance/ng95/evidence/l-management-of-ongoing-symptoms-related-to-lyme-disease-pdf-172521756184  last accessed 6/4/20.
  5. Hayes E, Mead P. Lyme disease. Clin Evid. 2004(12):1115-1124.
  6. Shor S, Green C, Szantyr B, et al. Chronic Lyme Disease: An Evidence-Based Definition by the ILADS Working Group. Antibiotics (Basel). 2019;8(4).
  7. Marques A, Telford SR, 3rd, Turk SP, et al. Xenodiagnosis to detect Borrelia burgdorferi infection: a first-in-human study. Clin Infect Dis. 2014;58(7):937-945.
  8. Feng J, Auwaerter PG, Zhang Y. Drug combinations against Borrelia burgdorferi persisters in vitro: eradication achieved by using daptomycin, cefoperazone and doxycycline. PLoS One. 2015;10(3):e0117207.
  9. Feng J, Shi W, Zhang S, Sullivan D, Auwaerter PG, Zhang Y. A Drug Combination Screen Identifies Drugs Active against Amoxicillin-Induced Round Bodies of In Vitro Borrelia burgdorferi Persisters from an FDA Drug Library. Front Microbiol. 2016;7:743.
  10. Feng J, Li T, Yee R, et al. Stationary phase persister/biofilm microcolony of Borrelia burgdorferi causes more severe disease in a mouse model of Lyme arthritis: implications for understanding persistence, Post-treatment Lyme Disease Syndrome (PTLDS), and treatment failure. Discov Med. 2019;27(148):125-138.
  11. Strle F, Preac-Mursic V, Cimperman J, Ruzic E, Maraspin V, Jereb M. Azithromycin versus doxycycline for treatment of erythema migrans: clinical and microbiological findings. Infection. 1993;21(2):83-88.
  12. Weber K, Wilske B, Preac-Mursic V, Thurmayr R. Azithromycin versus penicillin V for the treatment of early Lyme borreliosis. Infection. 1993;21(6):367-372.
  13. Massarotti EM, Luger SW, Rahn DW, et al. Treatment of early Lyme disease. Am J Med. 1992;92(4):396-403.
  14. Nadelman RB, Luger SW, Frank E, Wisniewski M, Collins JJ, Wormser GP. Comparison of cefuroxime axetil and doxycycline in the treatment of early Lyme disease. Ann Intern Med. 1992;117(4):273-280.
  15. Luft BJ, Dattwyler RJ, Johnson RC, et al. Azithromycin compared with amoxicillin in the treatment of erythema migrans. A double-blind, randomized, controlled trial. Ann Intern Med. 1996;124(9):785-791.
  16. Eppes SC, Childs JA. Comparative study of cefuroxime axetil versus amoxicillin in children with early Lyme disease. Pediatrics. 2002;109(6):1173-1177.
  17. Logigian EL, Kaplan RF, Steere AC. Chronic neurologic manifestations of Lyme disease. N Engl J Med. 1990;323(21):1438-1444.
  18. Logigian EL, Kaplan RF, Steere AC. Successful treatment of Lyme encephalopathy with intravenous ceftriaxone. J Infect Dis. 1999;180(2):377-383.
  19. Krupp LB, Hyman LG, Grimson R, et al. Study and treatment of post Lyme disease (STOP-LD): a randomized double masked clinical trial. Neurology. 2003;60(12):1923-1930.
  20. Fallon BA, Keilp JG, Corbera KM, et al. A randomized, placebo-controlled trial of repeated IV antibiotic therapy for Lyme encephalopathy. Neurology. 2008;70(13):992-1003.
  21. Klempner MS, Hu LT, Evans J, et al. Two controlled trials of antibiotic treatment in patients with persistent symptoms and a history of Lyme disease. N Engl J Med. 2001;345(2):85-92.
  22. Delong AK, Blossom B, Maloney EL, Phillips SE. Antibiotic retreatment of Lyme disease in patients with persistent symptoms: a biostatistical review of randomized, placebo-controlled, clinical trials. Contemp Clin Trials. 2012;33(6):1132-1142.
  23. Fallon BA, Petkova E, Keilp JG, Britton CB. A reappraisal of the u.s. Clinical trials of post-treatment lyme disease syndrome. Open Neurol J. 2012;6:79-87.
  24. Sackett D, Straus S, Richardson W, Rosenberg W, Haynes R. Evidence-based medicine: how to practice and teach EBM, 2nd ed.; Churchill Livingstone: Edinburgh, 2000.  last accessed 6/4/20.
  25. Guyatt GH, Oxman AD, Kunz R, et al. Going from evidence to recommendations. BMJ. 2008;336(7652):1049-1051.
  26. Institute of Medicine (U.S.). Committee on Standards for Developing Trustworthy Clinical Practice Guidelines., Graham R. Clinical practice guidelines we can trust. Washington, DC: National Academies Press; 2011.
  27. Johnson L, Shapiro M, Mankoff J. Removing the Mask of Average Treatment Effects in Chronic Lyme Disease Research Using Big Data and Subgroup Analysis. Healthcare (Basel). 2018;6(4).

Danielle Masek

I would just like to say that, as many comments are probably already saying at length, chronic lyme is real. I've had it since I was 12. I am now 43 and cannot work. I've been ill with something from age 12 and now it's at it's worse, thanks to non-existing competent care at that time. I've been waiting years for my disability claim to go through. There are plenty of studies re: chronic lyme...see https://www.ilads.org/

I have nerve pain, bone pain, headaches, dizziness, brutal neck pain, I cannot walk normally, I can never rollerskate or ice skate, or dance again. I've been in treatment for 4 years. This has ruined my life. The only deniers out there are those that have never been through this. And FOR SHAME! We get no insurance coverage for anything, pay many many thousands out of pocket for our doctors, supplements and therapies b/c IDSA is in bed with insurance companies, and we are too expensive. FACT.

I know those personally that have given up and killed themselves as they either cannot take the pain, or are flat broke and cannot pay for treatment anymore, are living in mobile homes due to chronic mold exposure many of us get b/c our immune systems are shot to hell, due to lyme, or die early b/c they got treatment too late, as their sorry excuse for doctors never correctly dxed them with lyme...and lyme gets EVERYWHERE in the body...heart, lungs, brain, nerves, muscles....does that sound like ANY KIND OF LIFE TO YOU? A recent prominent lyme dr has died of heart disease DUE TO LYME, b/c lyme gets into the heart, and he was not dxed in time. 

IDSA should BE IN JAIL for all the deaths THEY HAVE CAUSED.

I know of people who have BOTH lyme and cancer (God help them)...they said lyme was worse!

If that has not convinced you, you either cannot read and need to go back to 2nd grade, or have less than 5 brain cells.

We deserve to be heard AND BELIEVED, to be TREATED WITH RESPECT, we deserve to have our competent lyme doctors recognized as healers and not the devil, and to get affordable treatment. We deserve to not be perpetually broke just to stay alive--how can we afford 20k of care when we cannot work? Is there some magic potion I don't know about? B/c eIther we are being ignored, or people actually hearing us are perpetually STUPID! 

WE [redacted] MATTER! WE ARE NOT PARAMECIUM. WE ARE PEOPLE. PERIOD.  This is an issue of overt murder, denial, and human rights. 

If cancer patients were treated this way, the entire world would be on UP IN ARMS. But we are swept under the rug.

Danielle Masek
Woodridge, IL

Winifred Mauga

Tbdwg committee,

Borreliosis does not discriminate; Spirochetes know no boundaries.

It is apparent after listening to virtual meeting #13 and the banter about voting, that the public stakeholders who are suffering the most are represented grieviously.  

Borrelia sepsis irreversibly injures every organ of the body.

Ethically and morally one cannot un-vote on chronicity of Borreliosis.  Nor can congenital transmission be denied.  Babies lives matter.

Have care, concern, and courtesy for generations yet to come by showing dignity to those who are suffering now.

  1. Review the case definition of lyme.
  2. Review Dearborn two tier testing fiasco. 
  3. Be honest and knowledgeable.  

Your actions speak volumes and should be change for the 21st century views of the viral pathogenic relapsing aspect of lyme.

Here are some interesting links that are pertinent to what a conundrum Lyme and co-infections are.





Respectfully submitted from the swollen lymph node armpit of Florida,

Winifred Mauga

May12.org Organization

Members of our organization are concerned that both the Centers for Disease Control and Prevention (CDC) and International Lyme and Associated Diseases Society (ILADS) did not include the immune modulating effects of Outer Surface Proteins (Osps) in the Lyme disease case definition. Despite the available evidence, it appears the disease-causing effects of the Outer Surface Proteins shed by Borreliae are being ignored by both organizations. 
Due to lipoproteins shed by Borreliae spirochetes, a large number of people who have this debilitating disease often end up with an impaired immune system that is unable to keep reactivated viruses and opportunistic infections at bay.  These facts are missing in their case definitions of Lyme disease. Victims of this outcome are frequently misdiagnosed or denied any diagnosis or proper treatment. Unfortunately, those who are not correctly diagnosed are left to suffer when it becomes chronic or late stage. Lyme disease is rarely the only infection patients have after becoming ill. People with Lyme often carry a variety of co-infections and become prone to latent viral and opportunistic infections. 
Given the known effects that lipoproteins have on the immune system, both ILADS and the CDC should be doing extensive research to fully comprehend the effects that Osps have on the immune system.
Furthermore, we have conducted a meta-analysis of the data available on Osps and found that it is imperative that Osps are incorporated in the case definition of Lyme disease in order to accurately describe all cases of the disease. Including Osps into the Lyme disease case definition may give researchers and doctors a better understanding of why so many people relapse after treatment. It has long been documented in scientific literature that certain Osps have a direct impact on the immune system, specifically, on the Toll-Like Receptors (TLR).
There are currently two different definitions of Lyme disease. Both of these definitions, the ILADS model and the Infectious Diseases Society of America (IDSA) model, do not take into account the mechanisms of disease as demonstrated by the debacle of the LYMErix vaccine causing the same immunosuppression. Both models fail to address the key mechanisms of the disease: Immunosuppression.  Understanding how Osps affect the immune system, could also lead to better testing methods for all stages of the disease. 
The only CDC-sanctioned Lyme disease testing is ANTIBODY based. People whose immune systems are damaged (immunosuppression) don't produce the required functional antibodies to attain a positive CDC test.
The CDC’s denial of the persistence of Lyme disease is criminal, to say the least. 
230 peer-reviewed studies show evidence of persistent Lyme disease. 
This ILADS list has over 700 peer reviewed articles that support the evidence of persistence of Lyme and other tick-borne diseases. It is organized into different categories—general, psychiatric, dementia, autism and congenital transmission.
We at May12.org urge you to call for hearings led by the U.S. Senate Judiciary Committee, regarding the plethora of evidence revealing wrongdoing. 
This evidence exposes certain officers employed by the Centers for Disease Control (CDC), Infectious Diseases Society of America (IDSA), American Lyme Disease Foundation (ALDF), and National Institute of Health (NIH), as being complicit in maintaining an ongoing harmful enterprise, which has endeavored to manipulate and capitalize on the spread of vector-borne diseases, particularly Lyme disease. This matter has been considered for prosecution in the past for scientific fraud, racketeering, slander and human rights abuses under color of law, with the following actions ensuing, to no enduring avail:
In 2006 Senator Richard Blumenthal, while Attorney General for the State of Connecticut, sued the IDSA for antitrust regarding inaccurate “Lyme” testing and diagnostics, finding significant flaws in the IDSA guidelines development process and significant conflicts of interest among the guidelines panel members.
In 2014 Senators Blumenthal, Durbin, Markey, Warren, and Brown asked the FDA to ensure scientific validity of Lyme testing, which generated correspondence from the FDA confirming the current CDC testing, diagnostic and treatment standards for Lyme disease, would be invalid.
During lobbying efforts in Washington, DC in June of 2015, advocates were advised by the legal staff of then-U.S. Senator Jeff Sessions, to pursue hearings by the Senate Judiciary Committee, for ultimate referral to the DOJ for prosecution.Calling for a Congressional investigation of the CDC, IDSA and ALDF (over 91,749 signatures!) [https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf]
In addition, here is evidence that CDC officer [redacted] should be criminally charged for manipulating the current Lyme Disease definition and testing:
How did [redacted] leave Osp A and B out of diagnostic standard? - webpage documenting [redacted] leaving out Osp A and B from ActionLyme.org - The Lyme Cryme Whistleblower's Website . 
First priority to open up the floodgates so all Lyme victims can receive proper recognition, proper disability evaluations, and adequate treatments:
REMOVAL of the falsified Lyme disease case definition AKA "Dearborn" -1994, which would eliminate the fraudulent two-tier Lyme testing (which misses most neurological Lyme patients).
In the end, there is plenty of research that shows certain Outer Surface Proteins can directly impact the immune system resulting in immunosuppression. Given this information, it is imperative that if the CDC/IDSA and ILADS want to develop an accurate case definition for Lyme disease, they must include the fact that the immunosuppression from OspA/Pam3Cys directly impacts the production of functional antibodies.
May12.org Organization

Sean McCloy

As a physician practicing in the endemic tick-borne disease region of Maine, I see patients with Lyme Disease on a nearly daily basis. Fortunately many of them get better with the standard diagnosis and treatment protocol for acute Lyme disease. Unfortunately a subset of these patients have lingering and persistent symptoms. The current medical literature has recently demonstrated the presence of persistent spirochete infection despite short and long-term antibiotic treatment. Many of these patients end up with chronic illness and disability, creating a huge financial burden to the healthcare system as well as tremendous loss in their personal lives.

It is time for the Tick-Borne Disease Working Group to recognize AT LEAST THE POSSIBILITY of persistent Lyme Disease and other tick-borne diseases. It also needs to recognize that the standard of care for acute Lyme disease is not adequate for treatment of persistent illness.

In doing so, this acknowledges the legitimacy of these patients illness, removes some of the controversy among physicians regarding consideration of persistent illness, and opens up financial pipelines for further research that is critically needed to find answers for these very sick patients. Nonbiased, government-funded, large-scale research is what is needed.; I testified before a field hearing conducted by Sen. Susan Collins regarding these complex issues, and she agreed that further research is critical.

Thank you and be well.
Sean McCloy, MD, MPH, MA

Phyllis Mervine

The Great Disillusionment

There was a time in my life that I had great respect for the scientific community, and for doctors, and for our government. I was raised by parents who had a strong sense of ethics and something we called “noblesse oblige,” defined as the obligation of those with entitlements or advantages to fulfill certain social responsibilities. A fancy word for our obligation to try to make the world better for those who are less well off than ourselves. I founded LymeDisease.org in 1989 and have served as a volunteer ever since. I naïvely assumed that people who had risen to the top of the scientific and political world shared those values. I was wrong.

Now, watching the proceedings of the Tick-Borne Diseases Working Group, I am remembering my experiences on the NIH Advisory Committee for Clinical Studies on Chronic Lyme Disease, also known as the Klempner trials. In the early nineties NIH funded the Klempner trial with a $4 million grant and invited me and another patient to be on the Advisory Committee. As patient representatives we suspected we might only be “window dressing,”—there for PR purposes—but we put a lot of time and effort into critiquing the study design, hoping to ensure that the science would help sick people.

From the outset the investigators seemed to doubt that more treatment would help people who had already been treated, although as screening progressed, Klempner appeared to be struck by how sick these patients were. I quoted him in an interview we published in the Lyme Times #20, Spring 1998.

Their complaints are not ‘vague,’” states Klempner, “but, on the contrary, are very quantifiable. These patients are in a condition worse than patients with marked congestive heart failure. They are two and a half standard deviations from normal—among the most deviant of any chronic illness.”

He was one of the first to document this finding, which was later replicated in other studies, including MyLymeData.

Back to the Committee. First, they chose a treatment protocol that was minimal—we thought was doomed to fail for these patients. We argued for more IV but it would be prohibitively expensive, they said. They assured us, “This is the first of many treatment trials.” We got them to agree to add two months of doxycycline to the one month of IV ceftriaxone even though we doubted it would be a game-changer. Our Lyme program officer at the time, [redacted], assured us that they would interpret the results of this study narrowly and not overgeneralize. He lied about that. He also promised future treatment trials, which NIH has in fact funded, with mixed results and though the numbers enrolled are very small.

Subsequent trials have never managed to supplant that fatal first impression created by the massive PR campaign launched by the NIH when the Klempner trial was concluded by the Data Monitoring Board. There really wasn’t enough data to draw any firm conclusions and the study was not designed to settle the question of the efficacy of long-term treatment. It wasn’t even “long-term” treatment, just longer than the standard recommendation at the time. The Advisory Committee was never reconvened to assist NIH in the interpretation of the data, per our mission statement.

Nonetheless in the fall of 2001 NIH trumpeted the results to all the big media – New York Times, Washington Post, etc. and then portrayed the results in equally biased fashion on its website. Letters and protests had no effect. And after 9/11, the issue was buried. Today the website still stands with its headline: Clinical Alert: Chronic Lyme Disease Symptoms Not Helped by Intensive Antibiotic Treatment. [https://www.nlm.nih.gov/databases/alerts/lyme.html]

It could equally well—and more truthfully—have read: “90-Day Treatment Inadequate for Chronic Lyme Disease.” Subsequent to the publication of the study results, patient advocacy groups received reports of denials of treatment to chronically ill people based on this study. Not only that, but the data from objective tests, for example the CSF studies, which might actually be useful, have never been released or published.

I’ll wrap up this story of my first experience working with my government and their betrayal of the patient community. In the end, the Advisory Committee met twice in 6 years. At least one member never came at all. Things were still decided behind closed doors, before meetings, in the proverbial “smoke-filled rooms.” We did not fulfill our mission, and then we were officially thanked and disbanded.

Will the TBDWG serve Lyme patients better than the NIH Advisory Committee for Clinical Studies on Chronic Lyme Disease did? The membership and process irregularities of the second Working Group do not inspire me with confidence.

Phyllis Mervine
Founder and President, LymeDisease.org

Audra Mote

Dear Tick-Borne Disease Working Group,

I have been affected by Lyme disease since 1980, and have been very ill with it since 1998. It took 9 years to get an accurate diagnosis in 2007. Treatments since then to kill the Lyme bacteria have helped substantially, and I have felt much better since 2016, though I still struggle with sleep issues and have permanent food allergies and sensitivities from it.

It shouldn't take 9 years to get a diagnosis. Doctors need to be educated about this disease, how to use the Western blot test, how to recognize the clinical symptoms, and how to treat it long-term to kill the ongoing bacterial infestation.

We need better testing, and we need studies done on treatment options.

Please don't let politics, profit motives, or corruption interfere with this. Much of my life was destroyed by this disease. The pain level is simply indescribable. Please don't waste people's lives in service of money.

Thank you,
Audra Mote
Seattle, WA

Robin O'Rourke

Hello, I am age 56 and live in New Hampshire. Mother of two, wife for 29 years. I was bitten by a tick 2007 , Went to ENT because my throat swelled up. Ent told me I needed my tonsils out. I informed him I had them out when I was five. Dr. told me they grew back and he operated. I ate through a straw for a month. Then burning mouth syndrome. Dr. told me it was hormones. Developed chronic sinus infection. Spring of 2015 bit again on my back and developed an anaphalaxis reaction, Spit pfoam for two months. Told it was allergies. I have zero allergies. Fall Developed siatica. two weeks later pneumonia, three weeks after that a round rash on my back they called shingles.It was high up on my spine, never spread. Spring 2016, thought I was having heart attach. Hospital by ambulance. They told me I was dehydrated and sent me home. Three days later eating dinner sudden bilateral bells palsy, Back to ER. ER told me it was menopause and I needed hormone therapy. The list goes on to the tune of about eleven trips to ER. Treated like a drug addict looking for a fix ! Actually had a guard excort me out of ER. I knew there was something seriousely wrong with me and no one would listen.PCP finally sent me to neurologist who did a spinal tap. When results came in he said I was fine but under his breath he said find yourself a lyme literate dr. , you have marker 23 in your spinal fluid. He knew what I had and let me walk sending me down a rabbit hole.Had to stop driving because my heart was so out of control.Then they sent me to Mass General to see a top neuro. only to be insulted more. Neuro never even drew blood but offered to cut my eyes to make me more astettically pleasing ! Saw a heart dr. who sent me an email saying come see me after you get treated for the lyme if my heart is still bothering me ! Found an LLMD who ran more specific test and was positive for Lyme, Bartonella, Mycoplasma,Candida and other co infections. Started off at 185 lbs and dropped to 122 in 6 months.Been on treatment since 2016 and am now starting to get my life back. This disease has cost me well over 100 thousand dollars out of my own pocket because regular doctors would not treat my illness. I had a perfect health record before this. I had to sell my shop. Diagnosed with ptsd from all the tramma physically and mentally. I have even had to get some of my medicine out of the US due to cost. I flare same time every month.I  Dead bugs don't flare ! Sorry for the spelling it effects that to. I am beyond angry at the way I have been treated due to the CDC guidelines. I know more people with lyme than I do with cancer. Chronic lyme exists ! I and thousands of others on all the support groups did not loose their minds overnight ! This is wrong ! DO NO HARM ! Do your job and help figure this out. You don't get it till you get it.
Robin O'Rourk
Moultonborough, New Hampshire

Kathleen Paro

Dear Tick Borne Working Group
I am from Daytona Beach, FL and I am eight years in, living with Borrelia burgdorferi, Babesia, Ehrlichia, Bartonella and other co-infections known under the blanket term of Lyme Disease, that were delivered via tick bites in April 2012, while living in Mystic, CT. 
As you know, many physicians follow CDC guidelines for diagnosing and treating Lyme, based on the CDC serving as the approved resource for the mainstream medical community, teaching hospitals etc. If the CDC does not acknowledge any stage of Lyme other than acute, neither will physicians, insurance companies, or the general public. This directly harms patients in so many different ways. Ways that even I wouldn’t have imagined until I’ve been confronted by them.
By denying the existence of post-treatment, persistent, chronic Lyme disease et al, the CDC is not protecting people from health threats or serving in the best interest of patients. Too many people still think Lyme is no big deal. Get a couple weeks of pills and it’s gone. Or worse, just pull the things off, and never connect why the health is deteriorating and then misdiagnosed.
I ID’d and removed two ticks, had classic bullseyes, all classic symptoms and all positive Lyme titers as recognized by CDC/IDSA/ILADS, yet was under-treated anyway due to my GP’s prescribing of Doxycyclin: two week on with a  “check-up” visit delay before another two weeks with another “check-up” to follow. That coupled with timidity for looking past the “CDC says” mentality to do anything that would run afoul of the guidelines. This was never stated to me but it was obviously a concern. And sadly rightfully so with the way doctors who were actually trying to help patients had been and still are being persecuted, in CT and elsewhere. And patients continue to suffer.
The Dr did not want to go beyond four weeks even though, as I’d run through each two-week ‘script’, the acute sickness would return. While I waited for my next appointment I would revert to the level of sick as I’d been at the start which sent me to bed for days. He stated overuse of abx and MRSA as the reason for his reluctance to prescribe a longer course of Doxy. I asked why long term antibiotic use was acceptable for acne, and how CAFO industrial use of abx as prophylactic was acceptable when this disease complex I was struggling with, with it’s serious symptoms and a dire, direct threat to my health and ability to function on my own did not warrant further abx treatment beyond four weeks. 
Eventually he relented and I received a total of six weeks Doxycycline between the week of April 23, and July 31. My last prescription from that Dr was given to me on the day I had to fly to Florida to look for a rental house as my house in CT was being sold (I’d been bitten the week after the house went on the market and had an offer on it within a week). If not for that last ‘script; I would not have been able to make that trip – I was still that sick and the Doxy was the only thing that helped keep me from crawling to the floor. Seventeen weeks between start of antibiotics and the last from him. By then the damage was done. The invasion of these microbes into my systems was complete, and deeply entrenched. Even with good Lyme literate doctors in FL and in D.C. this disease complex has destroyed every aspect of my life from the physical to the financial and every other area of life imaginable. But I am alive and not wheelchair bound.
I am only now beginning to overcome some of the worst of the issues but I am nowhere near done with this - or I should say, it is nowhere near done with me. Nor do I expect I will ever be truly well. 
One vivid illustration of the profound impact of CDC’s lack of acknowledgement of Lyme in anything but acute terms - a trip to the ER after my 25 year old cat bit my hand to the bone while at the vet after the vet stuck the poor old guy sideways with a needle. The vet was bitten as well but those bites were flesh deep and accessible to wound cleaning whereas mine were not. As Cellulitis began to spread up my arm after unsuccessful oral treatment, I found myself attached to an IV pole in the ER with an IV Amoxicillin and Clavulanate potassium drip. I think this was 2018. While waiting for them to figure out where they could put me for the 24 hour IV push, I was visited by the young Resident who hadn’t examined or spoken to me but felt it important, and with me as captive audience, to sit on the far side of the room to tell me he was no expert but that chronic Lyme Disease didn’t exist. He went on for ten minutes about this, then stood and left the room. During that time I was counting up all of the ways that he was wrong and knowing that my saying so would have been an even bigger waste of time than his coming in to orate at me was. I also knew disputing his un-expert claims could get me a stay in the hallway on a gurney for the night so best to let him feel superior and cry silently inside at the severe pain, immense fear and soul-crushing losses this non- disease had cost me. 
Another extraordinary illustration from, I believe 2015, was an appointment with a new MD who was taking patients and took my insurance, with whom I’d communicated rather extensively to learn what her knowledge of tick-borne infections were before making the appointment. She assured me she was open minded and would look at my labs and detailed history from my Lyme specialists, and so I made an appointment, hopeful that I had finally found an MD in my area (central FL) where I would have a partner to help me rather than one who refused to look at all the labs and myriad evidence of my health state. I was seen for a consultation that lasted a fair amount of time. The Dr was thorough but misunderstood, or rather didn’t take the time to learn why a certain drug was being prescribed for Lyme in the long list of abx and supplements I was taking under the guidance my Lyme specialists. When asked, I gave her the best answer I had but being burdened with encephalopathy, dyslexia, short term memory loss, name drop and word search disabilities, asked that she speak to my provider at the Lyme clinic for accurate information as my answers were not to be assumed accurate. 
I was given labs for blood work to test for cholesterol and all the regular stuff primary care docs do and sent on my way. She also gave me a prescription for Lipitor, which was laughable as I’d shone her older labs that highlighted elevated cholesterol and the reasons why, and that she’d no idea at all what shape my kidneys were in when she handed me that slip and then the below happened. I never filled the prescription for Lipitor. If she’d looked at my history she’d have known that was a bad choice - and learned the reasons why some Lyme sufferers have high cholesterol.
Three days later I received a certified letter from this doctor stating that she could no longer “care for me”, that she would be available to see me for the next 30 days only and that I should look for another primary care physician. 
No reason was given, and while I thought it would come to nothing, I decided to call the office and ask the receptionist if she could find out why. Amazingly within an hour, the receptionist called back to say the Dr explained that she could not have me as her patient because she couldn’t abide by the drug she’s questioned being used to treat me. When I asked if there was something more, the receptionist said, “and Lyme Disease”. I almost heard a rim shot because I knew if there were truth to be told, this would come out. And there it was.
It would be funny but my life is not a life. It’s merely an existence – surviving, not thriving. I am essentially a shut-in. In fact I’ve been coaching others on how to navigate the quarantining/shelter-in-place issues that come up – how to get groceries without leaving home, how to keep from falling into deepest depression when you are sick and no one is aware because you don’t look sick, how to keep yourself from getting sicker by eating the right foods to bolster your immune system etc.
The CDC’s lack of acknowledgement of chronic, long term, late stage, - add your own descriptor here - non-acute state of Lyme and co-infections is directly responsible for my paying tens of thousands of dollars out-of-pocket for treatment, in lost wages, in lost opportunities, lost years, lost health, a house of lesser value because the majority of profit from the sale of my house went straight to treatment so my down payment was smaller while home prices had risen while I was too sick to move quickly in the first year of life with Lyme post-acute state… and so much more that will never be recovered, it makes me ill to think about.
It is unconscionable that in all these years, people like me are denied treatment, insurance coverage, and even the existence of the disease complex that is plainly covered in test results, copious amounts of clinical data and obvious debilitation.
Please do the right thing for those who come next and fix this. I am in my sixth decade now. Having spent most of my fifth in bed and severely ill, the best hope I have for change is not for me but for those who are soon to become victims of not only the many infections the ticks carry, but also the system and a society that ours huge sums into research for diseases that affect a relative few of the population and continue to deny the existence of what is a far more prevalent and insidious disease complex. 
If there is a reason I had to know the hell that is Lyme and the co-infections it strings along with it, may it be so that others do not suffer as I, and so many thousands upon thousands do silently, in pain and in desperation every day.
Thank you for taking the time to read this. I hope it has brought some humanity to what sometimes seems viewed as nothing but numbers and data sets.
Kathleen Paro
Kathleen Paro

Robin Reich

I need HELP in the Orlando Florida area... Will a doctor please message me if willing and able to assist me with this Babesia created with Lyme Disease. I have had it too long now.....and I am frightened. I want to live a wholesome life as best I can and I can not find a doctor who is legally able to treat me past the 21 day IV antibiotic treatment. Unless I PAY CASH. .. Also,,,, IS AN Infectious Disease doctor LEGALLY ABLE to take care of patients for this (Babesia/Lyme) yet past the 21 day IV antibiotics? IF so , who?? I am having a very difficult time trying to find a doctor who will treat me past 21 day treatment and is able to use my health insurance coverage of any kind. I am going on 5 years with the exact symptoms of Babesia after having been treated for Lyme Disease with an integrative and natural medicine doctor who was guided by Dr Richard Horotwiz's books out of NY. The book entails details and treatments of my disease(s) to the T. I have gone to ANOTHER 2 local infectious doctors here in Orlando, Florida who say they DO NOT treat Lyme Disease. This is SURREAL at this day and age....I don't have $$$ thousands of dollars to treat myself at [redacted] doctors.... Sadly, I can buy a gun but I can not use my $384.00 a month Health Insurance to treat my disease when there ARE treatment options available out there ..BUT ONLY FOR CASH.... Or, am I severely missing something here?

Also, I'm on the back stretch of this thing or things/diseases Lyme or and Babesia...And I am already in debt from treating basic Lyme... 2 years unable to work..(I only made six figures). And yes I have the credit cards I am paying off for that paid for treatment and or living without being able to work...... I am a strong person and I insist on working again....I am working... willing to work...never took charity.... have health insurance and yet... there ARE solutions out there ….documented...but I need large amounts of cash to use them.

Maybe I will try this angle.... Who has about $5,000 to $20,000 to give me to travel and treat my disease because the Health MR. OZ's of our world do not believe Insurance should pay for treatments found for my illness???? Please message me...I will keep all receipts to assure you that that is where the money will go...…And I am an organ donor so science can study this mess.... But.... GOD BLESS AMERICA there are options out there but I have to be wealthy in order to use them!!

I am going on 10 years since my positive Western Blot diagnosis of Lyme Disease… and I do realize Babesia is a co infection... However, I am currently treating myself -no doctor supervision.. Because I choose to pay my mortgage.. and possibly die in my own house without legal professional treatment versus moving into a tent because I had to pay CASH for treatment ... I am not sure if the "Samsara Herbs TICK Immune Support" will treat Babesia or only Lyme Disease...I started to lightly herx after 2 days so it's doing something.. Herx symptoms include morning headaches, eye inflammation/blurry, sweating..anxiety..neuropathy on the entire left side and is now agitated with tingling hot/cold increases..Or.... are these Herbs bringing the Lyme symptoms back that went into hiding verses KILLING these miniature beasts??

Who or where do I go for help? My mind has become boggled or continues to stay fogged with all the internet info and NO SOLID covered health insurance doctors who can legally treat me.


1990- Shirley, New York: Diagnosed Positive for Lyme Disease in Shirley, New York- took Deer tick with me to be tested -No rash - And was found to be pregnant on the same visit... I took the 30 days doxycycline and never thought of it again.
2010-St Cloud, Florida: Diagnosed again Positive for Lyme (Western Blot positive) Bitten by what I thought was a dog tick (much larger than a deer tick) didn't think Lyme Disease ..until I got the classic symptoms of Body and muscles aches, and asked to be tested for arthritis ...then clicked other symptoms together.... severe air hunger... unable to swallow food... depersonalization ...speech impairment, dementia, insomnia, chronic fatigue..severe vision issues...
**Treated with 21 days of IV Rocephin with a picc line--by an Infectious Disease doctor but then told me he was legally unable to treat me further after 21 days of IV ... And I was still unable to function let alone work --and got laid off after being employed there for 15 years - I was told my personality changed....Thank you Lyme Disease - I was now out of job .....
As a single, head of household person, I was forced to use my IRA savings(paid the penalty fees) to pay for health care treatment and living expenses in order to try and help myself to get better to be able to work.
*** Paid cash for service and treatment (approx 2 years) for an Orlando integrative [redact] medicine - I got my mind back ...and was able to work again... However..insurance would not even pay for medication being prescribed..coartem...and I still had or have air hunger ... eye issues and neuropathy... Which I believe and have read can be cured by a few treatments I have researched ... But where ...who has permission and how can it be covered under my health insurance that I already pay for??? I sincerely need HELP... please do not suggest lyme.org or lymedata for doctors referrals...Those doctors on that page are the doctors I listed in [redacted].

Robin Reich,
Still frustrated with my lack of health treatment and insurance resources for Lyme Disease and or its co-infection(s) in St Cloud, Florida

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