This webpage displays the written comments received by the Tick-Borne Disease Working Group for the October 2022 meeting. The opinions expressed in each comment displayed on this webpage belong solely to the author of the comment and do not necessarily reflect the opinions of the Department of Health and Human Services (HHS) or the Tick-Borne Disease Working Group. Any information provided in the comments displayed on this page has not been verified by HHS.
Alisa Rosenbloom
Quebec
The things I’ve learned since being bitten by a tick in August 2021, just over a year ago, cannot be contained. I would like my story and grievances to be counted among the thousands of patients suffering with tick-borne infections steeped in controversy. And, I know, my story is as common as a penny. I was a 36 year old woman, a wife, a mother, with a masters degree in educational psychology and a background working with students with special needs. I was healthy. I rarely went to the doctor. I had always trusted the medical system, always felt that we were so fortunate to have access to quality medical care should we need it, until I slowly realized 3 months after my tick bite, that I was displaying a constellation of Lyme disease symptoms and needed medical treatment fast. My education in Lyme disease began and it was like falling through the looking glass into a world where Government Health Officials referred to patients with tick-borne infections as “Lyme Loonies”. Just by being bitten by a tick, I had become one of the many victims in a longstanding medical war — and, what I would refer to as, a medical scandal.
When I first discovered my tick bite, I didn’t know anything about Lyme disease. I thought it was extremely rare and that the chances of me contracting it were almost nothing. I also read that if I were to develop symptoms, that it was easily treatable. I later learned that this is the standard script found in mainstream medicine and initial internet searches. This is what caused me to make the mistake after discovering my tick bite to use the “wait and see” approach.
The doctor I visited ordered a Lyme disease test without hesitation. It came back negative. As my research into the depths of tick-borne illnesses was just beginning, I soon learned that the tests used in mainstream medicine are unreliable, especially within the first few weeks after the tick bite. Very little has been done to improve Lyme disease diagnostic tests for the past 3 decades. With a negative result, the doctor dismissed me. I turned to online support groups, where I found helpful information from others who had been through the same thing. I was able to get an appointment with a dermatologist to show him the site of the bite and ask for antibiotics. He gave me one month of doxycycline. Within a week, I was feeling the best I had felt in 3 months. The unanimous opinion in every Lyme disease support group, coalition, foundation and association was that the CDC’s treatment guidelines of 2 - 4 weeks of antibiotics was not enough to treat late disseminated Lyme disease. I later learned this to be the case when I acquired another 2 months of antibiotics and upon stopping the antibiotics, all of my symptoms returned with a vengeance.
Using the resources and supports through various Lyme disease organizations, I found a doctor with experience treating Lyme disease a few hours away. I was able to get an appointment within a few days. The doctor sent my blood work to a private lab in the US with more reliable diagnostic tests for tick-borne illnesses. I had positive markers for Lyme disease along with the clinical presentation of the disease.
I attempted to seek help closer to home. I went to an Infectious Disease Specialist at my local hospital. She ordered multiple tests to rule out Lyme disease and other infections. The tests came back negative and some came back inconclusive. I tried to share my lab results from the private lab in the US with the Infectious Disease Specialist. She would not look at the results and insisted on relying on her own lab tests. She agreed to give me another month of antibiotics as a preventative measure and I was told that if I experienced any ongoing symptoms that I should change my daily activities and see a physiotherapist. The fact that I still had symptoms several months after a tick bite was not enough to warrant a medical treatment plan or even further follow up. If I did not have the financial means to see private doctors, not covered by insurance, my care for Lyme disease would have ended there.
At the 6 month mark, after trying several treatments with two Lyme disease specialists within a few hours from home, I decided to seek the expertise of one of the top leading doctors in the field. I would need to travel to this doctor a few times a year by plane, but at this point, I was prepared for that. I started a new treatment plan and within a few months, I experienced improvement and I am now able to tolerate being off treatment for one week at a time. I could finally put months of research to rest, as I was in the care of a doctor with over 20 years of experience treating tick-borne illnesses. I stopped reading the support groups, the articles on Lyme disease, I followed my protocol, had very hard days, but disentangled myself from the world of Lyme disease that had consumed all of my attention for 6 months. I had turned it all off, until a few weeks ago when a 22 year old woman committed suicide in Quebec after battling late stage Lyme disease. This was getting international attention. There is a coroner’s inquest investigating the contributing factors that led to her death. I wanted to contribute my experience of how inept the current medical system is at diagnosing and treating Lyme disease and how this neglect leads to late-stage Lyme disease, which leads to severe suffering and profound hopelessness. I now turned my focus away from researching treatments to ascertain my own healing path toward the widespread injustices caused by the mishandling of this disease.
Over the past 3 years, we have seen the pace at which science can move when there is enormous funding. We have the minds to create a vaccine to protect people in the face of the global Covid pandemic — the minds to create a vaccine in less than 2 years from when that global pandemic emerged. We deployed at-home diagnostic tests around the world for a virus that has existed for less than 3 years. Lyme disease has been emerging since 1975 and we still don’t have the tools to properly screen for it, let alone diagnose and treat it? None of the indicators that the Infectious Disease Specialist at my local hospital used enabled them to diagnose me or even indicate that I had an infection. The medical system is fallible and something is being grossly overlooked as thousands of cases like this arise, and it is not mental health— it’s Lyme disease detection, treatment and support. But there seem to be some powerful forces preventing progress for Lyme disease and tick-borne illnesses. I think it’s clear that something is very wrong when the Lyme Program Officer at the National Institutes of Health refers to patients suffering with Lyme disease as “Lyme Loonies”. Would anyone mock a patient with cancer or AIDS? It’s unfathomable. This program officer held a dehumanizing and biased view of the population he was meant to be serving. How and why would such rhetoric be propagated? But I wouldn’t want to spend too much time reviewing such trite and childish provocation when the point of all of this is to contribute insights to further progress in Lyme disease prognosis.
I think what we need most is reliable testing for tick-borne diseases. We need to be able to prove that the bacteria causing infection is no longer in the body by detecting its presence or absence. We need to do away with the unreliable tests currently used in mainstream medicine. In the meantime, we need to change the interpretation of our current testing methods to reduce false negatives. We need to treat Lyme disease tests like pregnancy tests or Covid tests — even if there is a faint line on these tests, it indicates a positive result. Similarly, if you have ANY markers for Lyme disease, you should be considered to have Lyme disease. It just doesn’t make sense that you should need to show more than an arbitrary amount of bands for a positive Lyme disease result, when those bands would not be there in the absence of Lyme disease. The current tests are nonsensically interpreted restricting the criteria for a positive result. Moreover, the bands that were removed after the LYMERix vaccine was introduced should be re-included. Why not remove those bands for patients who received the LYMERix vaccine, but include those bands for the rest of the population? By removing those bands from the population who did not receive the LYMERix vaccine, the results are being skewed unnecessarily, making it easier to get a false negative. The removed bands are important markers to detect Lyme disease and by leaving them out, important medical information is being omitted. The suicide of the 22 year old woman with late-stage Lyme disease could have been prevented if mainstream doctors had the tools to have screened and diagnosed her appropriately when she first presented with unexplained and mysterious symptoms. The tick population is exploding and Lyme disease is prominent, yet patients are not even being screened for it.
There are studies that show that the Lyme bacteria persists in other mammals (mice, etc), which is definitely a start to prove that it can persist in human bodies as well. There is even research that shows successful treatments for persistent Lyme disease symptoms, so why isn’t this entering the arena of mainstream medicine? Why is there still an insistence that nothing can be done if symptoms persist beyond an arbitrarily set treatment timeframe? The script used by mainstream medical doctors focuses on the absence of proof that the bacteria continues to exist in the body after 1 month of antibiotics. By the same token, there is no proof that the bacteria doesn’t persist in the body. The script also fixates on the risks of taking longterm antibiotics instead of the risks of not treating an infection. If you, your child, your spouse had ongoing symptoms after being bitten by a tick that continued after treating with the arbitrary month of antibiotics, would you just do nothing and let the symptoms persist, worsen, fester? The blanket statement to just “live with it” and “change your daily activities” is not good enough and I don’t believe that would be good enough for any of the people reciting that script of denial and negligence. Thousands of people suffering, mass protesting, associations, coalitions, foundations, support groups, all unrecognized by the medical system, all contesting the status quo in diagnosis and treatment of tick-borne illnesses. All the while, mainstream medicine continues to focus on restricting diagnosis and treatment in view of launching a Lyme disease vaccine in 2025. The more people that have Lyme disease, the less useful that vaccine will be to them. The CDC board members hold patents on this vaccine. It is blatant conflict of interest that the one’s writing the medical guidelines, promoting a medical script that denies and undermines a disease, have a direct financial benefit by furthering the agenda for a vaccine to be approved and for public demand to be in tact when that time comes.
Cherri Hufford
Gleason, Tennessee
I have rocky mountain spotted fever have had it 2 Yeats developed Airborne Alpha gal syndrome where I threw up everything I ate had Severe hives, brain fog, blisters, scabs and bulls eye rash, fanting passing out had to become vegan am allergic to all meats including turkey and chicken the lack of knowledge and awareness over tick diseases is far below aware in the United States as it is in the UK I have almost died several different situations due to the other party not being educated or ever having the proper treatment training to handle a situation with an individual with situations like this I am fume reactive I also have Airborne Alpha gal Rocky Mountain spotted fever I also have celiac disease so therefore I stay away from gluten mammal Dairy histamines artificial flavors natural flavors and any medications that have mammal or lactose in them most people aren't equipped or educated in what mammal is in everything none of my doctors are educated in this not even a jail facility nurse is educated in this I've been to several different places my next place that I'm fixing to go to is the news people are dying because people are not aware of the seriousness of diseases co-infections and invisible allergies Airborne Alpha gal syndrome is a carbohydrate molecule somebody do something.
Anonymous
Quebec
My daughter was bitten by a tick. She discovered the tick on her body two days after a hike in the woods. She developed a rash and flu-like symptoms a couple of weeks later so she suspected it was Lyme disease. That was a year ago.
I feel so robbed. She should have started trying for a second child by now. I know she and her husband wanted at least two children. By the time she finishes her long term Lyme treatment, she will be close to 38 years old. That’s very late in life to be having a baby. They should be enjoying social time with friends and family now that the pandemic fears have subsided but instead my daughter spends most days lying in bed, fatigued and plagued with a series of weird symptoms. I feel so robbed, so I can only imagine how my daughter feels. I know how terrified and frantic she was when she first began to piece together what was happening to her. She is so intelligent and when she began to discover the controversial nature of seeking care for tick borne illness, she was tenacious and determined to find a way to get help. She felt the race was on as she was still within a few months of having been bitten. Fortunately, her husband supported her throughout. I was skeptical, especially when I accompanied her to see a respected Infectious diseases specialist. When my daughter offered to show the specialist her results from IGeneX, the response was “oh no, no, that’s a predatory lab”. They had no interest in seeing results from something that she doesn’t believe in. The extensive series of blood tests this specialist ran came up negative with a couple of test results “inconclusive”! She then advised my daughter to “change her daily routine”.
My daughter continued her search for treatment. One medical doctor she saw gave her a treatment plan that consisted of seeing a Psychologist. She hit a wall with a Naturopath when the only suggestion left to her was to buy an expensive set of videos on how to change the way your brain deals with one’s illness. Seriously? This lack of diagnosis and treatment for my child left me feeling hopeless, helpless and terrified that the bacteria in her body could spread to her organs while our medical system twiddled its thumbs. There was nothing left for me, a complete layperson where medicine is concerned, but to make the leap over the precipice to the other side. The controversial side, almost “conspiracy theory like” side of the world of Lyme. To a parallel medical system completely disregarded by mainstream medical forces. Otherwise, there would be no medical treatment for my child, no hope whatsoever.
Fortunately, my daughter had the financial wherewithal to get treatment in a top Lyme clinic in the U.S, well-known in the Lyme community. The medications and supplements she must take, cover an entire surface in her bedroom. She is presently eight months into the treatment plan and will remain on it for as long as needed. Without more reliable diagnostic means how can we be sure that the bacteria have been eradicated, how will we ever really know that the three bacteria she has been sickened by, will not reappear?? These are amongst my ongoing fears and worries.
I’m adding my story and my experience here in order to be counted amongst those who are affected by the tragedy of this insidious illness and how it is devastating families. It is unbearably painful to watch one’s child suffer. As the number of those affected continues to grow exponentially each season, we need more political will to pull back the curtains on this epidemic. We desperately need to see meaningful advances in the areas of diagnosis and treatment of tick-borne bacterial infections.
Deborah Olsen
In the summer of 2004, I moved to Delaware to fulfill a dream I had of owning a larger house on a 4acre lot with a creek running through the yard, with an in ground pool . I was self employed , working really hard and living the dream . Who would have thought in just 4 short years it would all be lost , due to a tick bite . It was a early summer day , I was planting day lilies next to my pool and I was bit by a tick . I had no idea I was bit until the next day when it started itching in the morning and I scratched around my backside around my waist and something fell off me . I looked and it was a big fat tick. It looked weird so I grabbed a baggie and threw it in the freezer . It gave me an itchy red mark and I just put some hydrocortisone cream on it and went about my day. A few days later I felt like I was coming down with the flu . I was running an off and on again fever of 105 then it would go away , I had a horrible headache , felt like I was hit by a truck and could hardly move . I had to take off work . I made a doctors appt . Then my headaches got worse and my eyes started hurting really bad . I couldn’t handle light so I put trash bags on all my windows and wore sunglasses in the house . I had no idea what was wrong with me . I made an appt for an eye exam . I finally got in to see my primary care doctor and I had some small hives , told him I had a cold I thought and I was having really bad headaches . He just said he couldn’t give me any antibiotics because I didn’t have a fever while I was there and that I should keep the eye appt. That night I ran the fever again and they wiped me out . Still can’t work . I had my friend call Wilmer Eye Insitute because my eye are excruciating painful and my neck is now hurting really bad and the hives are coming and going . I speak to them and told them I live in Delaware and I can’t come to Baltimore do they know of any doctors here . She said she did and gave me the number to them . I called and he told me to come right In. I go there and he has no idea what’s wrong with me but he wants to have me there for eye drop treatments everyday . He said my “eyes were shaped like a football protruding out of the sockets “ and that “they are causing cuts and tears on my eye “ said he “had never seen anything like this before” so he gave me an Rx for a oral antibiotic and I saw him / someone in his office , everyday for 3 weeks . I had to take off more time from work . It took another 4 weeks before I could return to work but I was breaking out in hives the size of my torso and having the on again off again fever of 105 . And I feel like I can’t move and need to sleep all the time . So when I do work I can’t work the next day . So I have no diagnoses . Not working and my payment on my mortgage are falling behind . Finally my dad came by to see me and I was laying on the couch not able to move with huge whelps all over me and he asked “what in the hell is going on ? “ I said I don’t know dad I’ve made more Doctor appts but no one knows what’s going on and I feel like I’m dying . From that point on I went to several doctors . Rheumatoid, changed allergist , got a new primary care doctor , dermatologist, had 8skin biopsies. Was diagnosed with scabies twice . I didn’t have scabies . All my skin biopsies came back inconclusive . I developed a rash from hell for 3 years . I saw a gastroenterologist because my stomach was having issues . They found nothing . But I was diagnosed with diverticulitis. Finally the rheumatologist diagnosed me with fibromyalgia. I started feeling defeated and getting emotional and then I was told it was my hormones . Saw an endocrinologist and there was nothing out of the ordinary . I developed vertigo and a very very loud ringing in my head . Well they said it was tinnitus . I was told I had cognitive issues and that I needed anxiety medications, and I was having larger and larger whelps on my body . This went on for years . And by year 3 l, I was placed into foreclosure and I lost everything . I felt defeated and worthless . My dad stepped in and bought a house ( from money he inherited from my grandmothers passing that I could live in till we could figure out what was wrong with me . I had others move me out and put my things into the new house , when I found the baggie with the tick in it . I called my allergist and she said I could be tested for Tickborne illnesses , but that she wanted me to go to an Infectious Disease Doctor . So I found one and went to him and he told me that I was mIstaken that I couldn’t have anything from the tick in the baggie because “the lone star tick doesn’t reside in Delaware “ well needless to say I went off , and the Doctor said I needed treatment for anxiety and anger management. Again I felt defeated but I was also angry. After that I started having anaphylaxis of an unknown origin . This went on for 7.5 years, when one day when I was at work I heard someone talking to a news station out of DC about how he gets these huge whelps the size of his torso. Then he said it’s called and I grabbed a sharpie and wrote on my arm Alpha Galactose 1 3 .
I left work went to my allergist and asked her to write me up a lab slip for the blood test the man mentioned , and she rolled her eyes at me !! She told me that my problems were all in my head and that she had never heard of such an allergy before . Then I told her I wasn’t asking anymore I am demanding that you test me for this . She filled out the slip and I went to lab corp . At lab corp I told the woman I wasn’t leaving until they found a place to treat me for this and I showed her my arm. She said she had never heard of it . I said I wasn’t leaving , and that she would need to call the police to get me to leave . I wasn’t leaving . It took 2.5 hours and she found Viracor labs tested for it and she drew 11 tubes of blood . In two weeks the results were positive . I looked up alpha galactose on line found a Facebook support group . But my symptoms were still different . Headaches, eyes swelling , 105 fevers that I was still getting at night and sometimes during the day , the three year rash from hell. Not alpha gal typical symptoms . It took a year from that point to realize that and then I decided to look back at all of those tick test that had been ran throughout the years and I found out I was tested for Lyme Disease Only …. 12 times . So I went to my Doctor and asked to be tested for everything pertaining to ticks , went to the lab for the blood draw got results back in a week . I had just barely went into IgG for Rocky Mountain Spotted Fever .
I lost everything I worked so hard for to build my life . I lost friends who were not supportive , I isolated myself and at time I really started to believe this was something I was doing to myself . I Lost Myself . No one should ever be made feel that way by the medical professionals that we look up to for advise . This damned tick cost me everything . I was 56 when I got the final diagnoses of RMSF !! And I want to know Why ??? Why is Alpha Gal Happening ? And one more thing to add to this I was the first person with Alpha Gal diagnosed with Covid in 2019 !! At first we were told this was from a Bat… Do any of you have any idea how terrifying it is to think oh my god … I’m going to die because this is from a Bat, which is a MAMMAL !!! And also you don’t know if the medication is safe for me to take not only because of the mammalian ingredients but because they are experimental !!!! Alpha gal can be terrifying on top of making you loose everything. Think about that !!!
Thank you for all your doing,
Deborah Olsen
Harrison Suger
I write to request your help addressing the rapidly increasing incidence of Lyme disease and other tick-borne diseases around the world, as depicted in the new feature-length documentary The Quiet Epidemic. Lyme disease infects an estimated 476,000 Americans every year, with the highest rates among children ages five to nine. Even with prompt treatment, 10-20% of patients have long-lasting, debilitating symptoms, which means between 50,000 and 100,000 people each year contract a chronic illness from the bite of a tick, with no curative treatment. Lyme disease costs the American economy billions of dollars annually in increased healthcare and disability costs, as well as lost productivity.
In addition to a high rate of treatment failure, the current tests are unreliable, missing half the cases at different stages of disease—particularly early in the disease when treatment would be most effective. Compounding these problems, widely followed clinical practice guidelines published by the Infectious Diseases Society of America and endorsed by the CDC dismiss emerging science while providing no cure for long-term illness. They restrict access to treatment and insurance coverage for large numbers of chronically ill patients who are faced with misdiagnosis, obstacles to treatment, and the financial burden of out-of-pocket expenses. The NIH hasn’t funded a single clinical trial in pursuit of effective Lyme treatments since 2008.
Similar to Long-haul COVID, some patients go on to have long-term debilitating illness. Lyme disease patients have been experiencing this for decades, yet they’ve been routinely ignored and dismissed by our federal health agencies and the scientists they fund. Since 1975, a small cohort of researchers has received nearly all federal research dollars while producing no improved diagnostics or therapeutics. Their main focus has been arguing that Chronic Lyme disease does not exist despite overwhelming evidence from emerging, privately-funded research that demonstrates currently available antibiotics are not always effective.
To overcome these roadblocks, in addition to needing increased funding, we need those federal research dollars to go to forward-thinking scientists who can approach Lyme disease with an open mind and a desire to help patients.
The HHS Tick-borne Disease Working Group has provided detailed recommendations to address this epidemic in its 2018 and 2020 reports to Congress. Increases in funding have recently been appropriated for CDC and NIH programs for Lyme and associated tick-borne diseases.
This is a start, but we need Congress to exercise its responsibility for oversight to monitor the performance of these agencies and ensure that taxpayer money is used wisely and most of the funding goes towards programs and research that have measurable benefits for patients.
Top priorities include research to develop better tests and clinical trials to evaluate treatments for Chronic Lyme disease and other tick-borne diseases. We also need research to investigate connections between tick-borne diseases and psychiatric illnesses, and research into the maternal-fetal transmission of Lyme disease and resulting developmental disorders and deaths.
I am one of the millions of Americans suffering long-term debilitating persisting illness from tick-borne disease despite antibiotic treatment following government guidelines. We are treated as the untouchables in our modern day medical caste system. Our government's negligence has inhumanely left us to fall through the gaping holes of our broken healthcare system leading to incalculable suffering. A decade into my debilitating affliction at the age of thirty-three; I am mostly housebound, not able to work, and without a future. Until medical breakthroughs bring about effective treatments and accurate diagnostics that can show once an infection is cleared, we live an unrelenting tortured life. U.S. Department of Health & Human Services, have the courage to do right by us and expedite meaningful change!
Jennifer Hyla
I contracted Lyme disease during my military service in 2011. Due to the lack of awareness, I was misdiagnosed by military doctors for four years, missing the critical early window for effective treatment. My early signs of Lyme disease presented with joint pain and swelling, weight gain, mood changes, and memory lapses. I never saw a tick, and I never saw a rash. Military doctors told me I had arthritis, and I was treated with immunosuppressive steroids and NSAIDs for 4 years, unknowingly trying to manage the pain of undiagnosed Lyme disease.
My health slowly declined, and in 2015 I began to develop the neurological symptoms of Lyme disease, eventually becoming unemployable, and bedridden. It took me losing the feeling in my arms and legs and asking a civilian doctor for a test to learn I had late-stage Lyme disease.
Once I was properly diagnosed, I began Lyme disease treatments with oral doxycycline, Tindamax, and IV Rocephin. Without much improvement, I began herbal treatments through a naturopath. After two years of treatments altogether, I decided to take a PCR test to see if I was dealing with a different infection. After two years and my entire life savings spent on treatments, I could not believe I still tested positive for Borrelia burgdorferi, Borrelia recurrentis, and Ehrlichia chaffeensis!
My life has been completely altered by this illness, I have lost the majority of my friends, and my career of 10 years. I have been unable to work full-time for over six years. I struggle every month to cover my food, medications, and rent. I struggle to find doctors covered by my insurance to take my unresolved symptoms seriously. I am constantly told that I am perfectly healthy despite the multiple prescriptions doctors are willing to send me home with.
My experience is incredibly common, according to the International Lyme and Associated Disease Society, the average Lyme disease patient takes 2 to 5 years to be properly diagnosed, and 1 in 5 Lyme patients fail the standard CDC treatment protocols and develop chronic illness.
Those 1 in 5 patients who fail standard treatments are often given a new diagnosis of Post-Treatment Lyme disease syndrome, which has no medical billing code, and no treatment protocols, leaving thousands to fend for themselves.
With an estimated 400,000 new cases in America this year, we need to take action now on curbing new cases and geographic spread. We need to educate medical professionals and the public and work to improve the quality of life for Lyme patients by funding improvements in testing and treatment options.
Thank you for your time and attention to this urgent matter,
Jennifer Hyla
Kathleen Wallace
I have been an active listener and participant in public comment since inception of the Tick Borne Disease Working Group. I thank each of you for your hard work and dedication. It is much appreciated.
Objectives as defined in the 21st Century Cures Act include gaps in the tick borne disease research. I speak again about one of those gaps; MCS or Multiple Chemical Sensitivities.
MCS is a medical condition characterized by adverse health effects from exposure to common chemicals and pollutants from products such as pesticides, new carpet, paint, renovation materials, diesel exhaust, cleaning supplies, perfume, scented laundry products and air fresheners (1).
The symptoms of MCS are diverse and unique to each person. Symptoms range from mild to life threatening and include headache, trouble concentrating, nausea, diarrhea, fatigue, muscle and joint pain, dizziness, difficulty breathing, irregular heartbeat and seizures (2).
With MCS we lose the ability to use public transportation, public housing, or hotels. We are unable to participate in many community activities. The social impact is gruesome. Our quality of life is significantly degraded, Access to healthcare can be difficult as we have to tolerate hospital and office air.
Our needs regarding MCS are vast. We need a medical code. We need research. We need education for physicians. We need better air quality control.
My passion to make a difference has grown through my journey. I was a successful business owner and manager for a national company. I lost my home, my business, and my family life because of MCS.
Resilience has become my middle name.
One of the most challenging issues to navigate through has arisen from physicians, family and friends not believing in my MCS. Many chose to ignore pleas to use MCS friendly products on themselves and their clothing . Imagine spending all your holidays in complete solitude: it is not fun.
You speak of equality in tick borne disease and conditions, however, the syndrome of MCS remains to be investigated.
This 2022 clinical presentation and pathogenesis subcommittee report priority #3 focuses on the Alpha Gal syndrome. I couldn't agree more however no mention of other difficult syndromes associated with tick borne disease.
Also shared by this TBDWG -results of clinician encountered barriers include scientific knowledge gaps that identify Alpha Gal syndrome but again no mention of other syndromes.
Please note that MCS is the pure definition of invisible illness.
Part of your core values is collaboration. To actively listen to the patient experiences shared with you, respect the lived experiences of patients and their advocates and to learn from these experiences in your pursuit of objective truth.
I live the experience, while science can provide research.
I suffer daily. Please include MCS in your areas for discussion.
Thank you for your time.
I am here to serve.
Kathleen Wallace
reference:
1. Dr. Anne Steinemann, Journal of Occupational and Environmental Medicine, March 2018 volume 60 Issue 3 pg.152-156
2.Anne McCampbell, M.D. Co-chair of the MCS task force of New Mexico. New Mexico MCS brochure by the MCS task force of New Mexico 11/00
Rosanne
Connecticut
I tested positive for Lyme Disease 30 years ago in Westchester County, NY. I was given the typical 2 weeks of antibiotics, relapsed and repeated course. Since then, I have never been the same, with health issues evolving over time. This year, in Connecticut, I found a tick attached to me leaving a bulls-eye rash. Urgent Care wasn’t interested in even looking at the rash. They prescribed a preventative dose of antibiotics. I grew sicker over the weeks that followed and my primary doctor gave me the typical 2 weeks of antibiotics. The test I received in her office came back ‘negative’. When I relapsed a week later, I knew I had to take more specialized tests or seek out a Lyme literate MD. I requested assistance from my doctor’s office, but they did not return my call. Thank God I began researching on my own. Not only did I test ‘postitive’ for Lyme Disease but 2 strands of Babesia (Duncani and Microti), as well. Now, I have 6 months of treatment under my belt with antibiotics, a malaria drug, probiotics and supplements. I am 75% better. Sadly, I have come to realize how misunderstood and political tick-borne illness is.
Federal health agencies have shielded themselves from responsibility by not making adequate testing available. They don’t have to worry about a disease someone doesn’t have. Lyme and its co-infections do not fit in the neat little box of guidelines that have been set. The bacteria and parasites morph, go dormant, and form biofilms to evade medication. Meanwhile, illness becomes harder to treat and chronic. A doctor prescribing a simple course of antibiotics is not realistic for dealing with something so persistent and adapted for survival.
The way federal health agencies deal with tick-borne illness is flawed and negligent. I have learned first-hand that people stricken with these infections are:
- unable to obtain appropriate medical care. (Typically, after being bit by a tick, Urgent Care will prescribe an antibiotic pill to ‘prevent’ Lyme Disease. However, this only works if you’ve been bitten within a certain number of hours—not something you’d be likely to know. This only leaves you untreated as the bacteria or parasites spread through your bloodstream. After never getting well or relapsing you are left to move from doctor to doctor in desperation. Hopefully, you end up searching for and find a Lyme literate MD (that are few and far-between). If you can afford it, you must pay out of pocket for consultation, diagnosis, and treatment.)
- unable to get accurate testing and diagnosis. (As you get sicker, tests given in your primary doctor’s office produce around 71% false negatives [Bay Area Lyme Foundation, BALF, 2020]. It is an acute-stage-only immune-reaction antibody test, with about 35% sensitivity. It only works if used within weeks 4 to 6 of infection.
Patients unable to get a positive Lyme test-result from their doctor may be forced to pay out of pocket for further testing through a specialized lab. Most likely they won’t be covered because Health insurance goes by ‘allowed’ Medicare guidelines- even if you don’t have Medicare. The only possibility for coverage is if your doctor is willing to file and pursue an ‘appeal’. Then, even if your tests show certain Lyme bands, guidelines for what constitutes having the disease are falsely tight. Truth be told: you still have the disease regardless of the number of positive bands you present with.)
- unable to get effective treatment. (Most likely, a primary doctor covered by health insurance will not be trained to think outside the box and treat you wholistically. Unconventional doctors and treatments are needed for these bacteria and parasites that invade the ‘whole’ person. These infections are complex and there are many variables. They require a Lyme literate specialist who can come up with an individualized treatment plan, in tandem with ways to detox, and replenish good bacteria that has been lost during treatment. The need for this must be recognized.)
- unable to get insurance to cover medicine and treatment. (The over-simplified guideline of ‘2 weeks of antibiotics’ does not work for around 30% of those afflicted with these illnesses. Success stories come from chronic patients treated for years by Lyme literate doctors. Unless you can get your doctor to ‘appeal’, you are left to pay out of pocket for ‘denied’ prolonged treatments and medications. If you can’t afford this route, you will go on to make Big Pharma rich by taking countless medications to treat the symptoms your underlying Lyme has caused. The disease mimics over 300 disorders (fibromyalgia, MS, Alzheimer’s…). Most likely, multisystem issues will develop. Lyme attacks the immune system, nervous system, heart, joints, and skin. It can affect cognitive health, mood, and sleep. ... Congress must enact medical insurance coverage laws that help patients who cannot afford necessary medicines and supplements to treat long-tick-borne infections.)
- unable to work and engage in normal activities (These infections may lead to disability, yet you will NOT be entitled to private or federal disability benefits. This will make you dependent and a burden to family if they are still around. The inability to live a normal life will only worsen the depression/anxiety that the illness already produces. You will be marginalized and unable to support yourself.)
- unable to receive the support and understanding of family, friends, and medical providers (A stigma is associated with tick-borne illness. The guidelines presented by health agencies only leave the victims standing up for themselves. Many have been exposed to the falsehoods spread about Lyme Disease: It’s cured with a simple 2 weeks of antibiotics. Most likely, doctors consider any illness after that to be ‘Post-Treatment Lyme Disease Syndrome.’ Then that leaves your ‘chronic’ illness ‘all in your head’ or an ‘excuse’ to be lazy and not show up for life. Those afflicted are emotionally scarred by those who ignore or brush them off. Even physicians don’t have the time for such complicated patients with such a controversial disease.)
- unable to escape financial hardships. (A patient that continues to suffer after 2 weeks of antibiotics is left to fend for themselves. Out of desperation, they may be driven to pay out-of-pocket for Lyme literate practitioners, unconventional treatments etc. They risk losing lots of money with unknown results. If they don’t have the funds to pay out-of-pocket, they may just be left to suffer and die alone. See the countless stories shared in Lyme Disease support groups.)
I am pleading that federal health agencies acknowledge that Lyme and co-infections:
- can occur in any state and many countries. They are currently spreading in epidemic proportions and time is being wasted. Ticks do not know boundaries. It will only get worse.
- do not have reliable tests that have been approved and readily available for doctors to use. Also, a negative on the current CDC test does NOT mean a patient does not have illness. Non-CDC Lyme/co-infection tests through a specialty lab may be necessary. In addition, patient symptoms and history need to be considered for clinical evaluation.
- are extremely complex and require the evaluation of a Lyme Literate Physician or practitioner. These need to be covered by insurance.
- are serious, disabling, and often result in chronic, long-term multi-system disorders. They are not psychosomatic but caused by infection(s). The Lyme studies that federal health agencies cited for statistics in the past were flawed. Those chronically ill have not been studied and need to be. A reliable test is needed to pick up current infection.
- can be transmitted via blood transfusions, sexually, and congenitally. More research needs to be done. Countless people are being unknowingly infected.
I urge federal health agencies to shed light on the following:
- In the early 1990’s, a bad Lyme vaccine harmed patients and was taken off the market. A Lyme test was required for the vaccine trials, and if the test did not work, it would appear the vaccines did. So, they used the failing Lyme Disease tests for the success of the 1st Lyme vaccine.
- Federal representatives now want to push the new Lyme vaccine currently in trials. Again, will they be allowed to benefit from the failed CDC Lyme tests? Will the false negatives make it appear to work? The vaccine will make many people rich. What will be done about the individuals already infected—will the vaccine make them even sicker by reactivating old illness? What about those who will be stricken by the many co-infections that the vaccine does not prevent? Will this only give the public a false sense of security and an excuse to engage in riskier behavior?
- The anti-chronic-Lyme agenda has caused patients to be dismissed for DECADES. Federal health agencies purposely undermined, simplified and lied about the disease. ALDF and IDSA knowingly misinformed doctors about the disease and the CDC Lyme test. Health insurers have greatly benefitted from the collusion.
- People in the Lyme community realize that the agencies have ‘stacked the deck’ against them. Votes and reports to Congress have been manipulated. The TBDWG has ignored and whitewashed patients’ written comments in the past. It was also heard that Lyme advocates serving as non-federal members have been targeted and silenced when speaking out about transparency issues. There is a need for investigation, disclosure, and the removal of anyone connected to the years of Lyme misinformation. This is the only way that Lyme science will be able to advance. Actual Lyme Disease patients need to control federal efforts –not ‘players’ receiving federal funds to push an agenda.
- There needs to be an overhaul in Lyme education and the spreading of public awareness: After the initial stage of Lyme Disease, more than a few weeks of antibiotics is needed to treat. Other tick-borne illnesses, usually contracted with Lyme, may require medication other than antibiotics. People may develop chronic disease, requiring long-term, intermittent, or non-conventional treatments.
- Lyme literate doctors have had their hands tied. Health insurance guidelines should not control the treatment they provide. A bill must be passed that ensures States can no longer go after a Lyme Doctor’s/Practitioner’s licenses as they have in the past. Professionals in this field are desperately needed and they should be encouraged, not ‘red-flagged.’
- Health insurers must be required to cover Lyme Disease tests, treatment and necessary expenses without a struggle and the need to ‘appeal’.
- A special ruling for long-term disability needs to be written for those unable to work due to tick-borne infections. Judges must be provided with the means to determine if a person is disabled by such an illness.
- Bad covid19 outcomes and long-covid may be attributed to cases of undiagnosed Lyme Disease. This group is particularly vulnerable to more adverse covid outcomes or overall vaccine reactions. There has been no warning about this.
- Research must immediately be funded through emergency declarations. This research needs to be in testing (early and late detection), diagnosis, and treatment. Chronic patients need to be studied. Transmission must be further researched. Also, conditions that exacerbate the problem need to be explored (displaced wildlife due to excessive building, climate change, etc). But this research should not be done by the same researchers that have perpetuated false information.
- The TBDWG has a directive to develop a summary of tick-borne disease research. Consider the hundreds of peer-reviewed scientific articles Carl Tuttle has identified, gathered, and made readily available. He has 363 Peer-Reviewed Studies of Persistent Lyme infection. Tuttle’s petition calling for a Congressional Investigation of the corruption of Lyme Disease medicine has almost 100,000 signatures! …Dr. Kenneth Liegner’s book is chock-full of patient records. One patient, Vicki Logan, died wanting her story to be told. … Dr. Richard Horowitz’s book has case-studies. Dr. Bill Rawls’ book provides research. What about information from Dr. Neil Spector (physician-scientist) who went undiagnosed then needed a heart transplant?... Controversy aside, the data is out there.
The Lyme patient community is not fooled by empty promises that Lyme progress “is coming.” They know that progress cannot be made if people are around still covering up dirty deeds of the past. How many more people have to suffer? This is a fast-growing, silent epidemic that needs immediate attention.
TBDWG members, please do not forget who you are supposed to be helping. You must pursue the truth. Vote against the federal majority and write minority reports.
We have many reasons to have lost trust, but we will not lose hope in compassionate people of conscience doing the right thing. Please do the right thing. Thank you.
John Scott McDonald
Palm Coast, FL
I’ve had AGS for over 25 years (since 1996-87). The first half of that I gave up trying to convince allergists that a delayed reaction to food was a thing, even got accused by several of trying to get drugs via epipen requests. Many trips to ER in the beginning figuring it out on my own and almost died from those numerous times before I gave up beef on a hunch. I can eat pork all day with no reactions - but even fresh feta cheese on a salad has triggered an ER trip. Finally one day my Dad called me from his job at labcorp and said they had a new test … I went immediately to get it done. Here were my results in 2012.
Today I’m vegan by choice it was just easier than the anxiety of not knowing when a bad reaction would happen. I’m content and don’t desire red meat….
But I’m shocked I’m not alone in this now after all these years where no one including my doctors would believe me.
I was denied an epipen by my insurance today -0-17-2022 when trying to pick one up for the first time in years for a trip - no reason was given - or alternative. I leave on a cruise next week and hope I don’t react to anything… if I do I could die on my 13th anniversary trip. This is what I live with.
Thank you very much.
Andrea Jackson, Greeley, CO
Nancy Prevatt, Palmdale, FL
Daniel Collinson
Stephen Crump, Chico, CA
Rebecca Sidlaruk, Twin Falls, ID
LeEtte Beckhorn, Floral City, FL
Cindy Kranson, Glendale, AZ
JoAnna Dowlearn, Lonoke, AR
Wendy Spring Gelb. Pearl River, NY
Anonymous, New Market, MD
Alwynne Blake, Raymond, NH
Debra Hovagimian, Sutton, MA
Lyn Ambrose, London, UK
Anke Bohmer, Spring, TX
Tracey O' Riordan, Lusby, MD
ANONYMOUS, Peoria, IL
Riley Char, Philadelphia, PA
Victoria Leighton, McCormick, SC
Anonymous, Cranberry, PA
Rendy Fisher, Portage, IN
Rebecca Welsh, Ripon, CA
Tricia Salazar, Clearwater, FL
Gayle Francis Libby, Mt
Anonymous, Chesterton, IN.
Nate, Findley, MN
Kelli Nassi, Colfax, CA
Jackie Confalone
TBDWG Written Public Comment. October, 2022
I am a Lyme Disease patient greatly impacted by the corruption of Lyme Disease medicine and the federal health agencies’ for 4 decades causing patients to be;
- unable to get accurate testing and to have their Lyme accurately diagnosed,
- unable to get effective treatment,
- unable to have get insurance to cover treatment costs,
- unable to obtain knowledgeable medical care by a doctor that actually understands what Lyme Disease causes and how to treat it, (because for 40 years the federal health agencies, ALDF and IDSA knowingly misinformed doctors about Lyme and the CDC Lyme test (acute (weeks 4 to 6 ONLY) and 71% false negatives (Bay Area Lyme Foundation, BALF, 2020)),
- unable to be awarded private and federal disability based on their Lyme Disease diagnosis and illness,
- unable to work and engage in activities (life),
- unable to escape financial ruin due to the inability to work and the great cost of available treatments,
- without the support and understanding of family, friends, the public and medical providers that have been lied to about Lyme Disease – lying about 1.) it being is a serious and disabling illness that results in devastating multisystem illness and neurological, immune, and neuroimmune outcomes and 2.) the CDC test (that does not work, is for acute cases only (CDC itself), and results in 71% false negatives (BALF, 2020) for that serious illness causes millions to go undiagnosed.).
I provide the following comments (these comments are really addressed to the non-federal TBDWG members because patients know the federal members, represent their agencies (as they have told us) and they will not want these comments seen or the actions called for in them taken.).
The TBDWG must document the above 8 impacts ARE the result of the manipulation of Lyme Disease medicine and each must be remedied immediately. For 40 years the federal health agencies, IDSA, and ALDF have misinformed the medical community and the public about Lyme Disease and Lyme testing (an acute-stage-only immune-reaction antibody test, with 35% sensitivity that results in 71% false negatives, for a multisystem illness that inhibits your immune reactions to the infection.)
The TBDWG must call for the federal health agencies to be required to issue Public Service Announcements that detail the truth about Lyme Disease – that it is a serious disabling illness that results in severe chronic illness and possibly 300+ other illness and cognitive and mental health issues, that the CDC Lyme Disease test does not work as it is to be used only in weeks 4 to 6 and that it results in 71% false negatives (Bay Area Lyme, 2020), that more than a few weeks of antibiotics is needed to treat Lyme after the initial stage and that the only reason the public does not know this yet is because the CDC and ALDF have maintained an active campaign to keep them from learning it. (Anyone doubting such a campaign exists can read the now widely-circulated email ALDF sent to researchers that often get Lyme research funds and 2 high-ranking CDC representatives (one a CDC Chief and the other a CDC Lyme test patent holder that is responsible for the denial of potentially approved new Lyme tests) that called for a “sociopolitical” campaign against Lyme patients and doctors because the science was not on their anti-Lyme side (the side of a false and created controversy the CDC and ALDF began in the early 1990s for the success of a bad Lyme vaccine that harmed patients and was taken from the market decades ago – a Lyme test was required for the vaccine trials and if the test did not work, that made it appear the vaccines did.).
Federal Health Agency public service announcements and agency websites must immediately acknowledge:
- That Lyme Disease is a serious and disabling illness that results in long-term chronic multi-system illness.
- That Lyme Disease occurs in every United States’ state and in many other countries (where their governments, like the United States’ government have said it does not occur).
- Lyme Disease results in over 300 illness, neurologic, immune, and neuroimmune illness, and cognitive and mental health issues.
- That anyone with chronic illness, especially those with long Covid, myalgic encephalomyelitis, chronic fatigue syndrome, fibromyalgia, chronic pain, Alzheimer’s, cognitive and mental health issues, dementia, lupus, multiple sclerosis, and other illnesses often caused by Lyme, need to see a Lyme Literate Physician and be given a non-CDC Lyme test. (Health insurers who have greatly benefitted from the CDC and IDSA collusion that has made patients unable to get a positive Lyme test result and therefore an accurate diagnosis and unable to get treatment paid for by insurers must pay for the testing and treatment costs.)
- That Lyme Disease is transmitted via blood transfusions, sexually, and congenitally, that these types of transmissions are not rare as previously reported, and that any statements suggesting they are rare is unfounded because there is no accurate approved test for stages of Lyme that these modes of transmission would result in.
- That for 40 YEARS the federal health agencies, ALDF, and IDSA have corrupted Lyme Disease medicine, reversing and suppressing Lyme Disease facts and making Lyme Disease testing fail, causing millions to become chronically ill and disabled while suffering gaslighting, abuse, and ridicule from the medical community and public.
- That the CDC Lyme Disease test is NOT to be relied on for any stage of Lyme Disease, that it only detects 71% of acute Lyme Disease cases and was never meant for the diagnosis of cases beyond 6 weeks after initial infection.
- That there is no approved test for long-term Lyme Disease and a negative on a CDC Lyme Disease test does NOT mean a patient does not have Lyme and illness resulting from Lyme Disease.
- That Lyme Disease is not a psychosomatic illness, it is a very real and caused by infection(s).
- That a 2-week doxycycline treatment for late stage cases does not cure Lyme Disease and a subsequent CDC Lyme Test is absolutely not to be relied on to detect if a late stage case has been cured.
- That a special ruling for long-term disability is being written and real Lyme Disease advocates are participating in the majority in that.
- That Lyme Disease is transmitted sexually and congenitally and the number of cases the federal government has kept from being identified over the past 40 years is criminal.
- That the TBDWG has commended Lyme Doctors/Practioners for the service to patients and the Lyme Disease community and has recommended a Bill be passed that ensures the States can no longer go after a Lyme Doctor’s/Practioner’s licenses (as they should have never been allowed to).
- That the TBDWG has recommended that a complete overhaul of Lyme Disease education be made. (The CDC’s excuse that they can’t influence education after they’ve promoted 40 years of misinformation is not acceptable)
- That the TBDWG has recommended that actual real Lyme Disease patients that are fully aware of the corruption of Lyme medicine be those who control federal Lyme efforts – that are no longer in the hands of the players involved in or supporting the 40 years of Lyme medicine corruption.
- That those involved in or supporting the 40 years of Lyme Disease medicine’s corruption and causing the suffering of millions unable to get an accurate diagnosis or treatment due to the purposeful action of those involved will no longer work for or with federal Lyme efforts of any kind or receive any federal funds.
- That the TBDWG has recommended that health insurers be required to cover Lyme Disease treatment and expenses and that patients will not be required to produce a CDC positive test result in order to have costs covered.
- That bad covid19 outcomes and long covid may very well be attributed to cases of undiagnosed Lyme Disease and that the federal government was fully aware that Lyme Disease results in the immune impacts that would result in a person’s being particularly vulnerable to significantly more-adverse covid outcomes.
- That the CDC Lyme Disease test and Lyme Serum will not be used to validate future Lyme Disease tests as both were manipulated so that they do not identify or represent most cases of Lyme Disease.
- That research will be immediately funded through emergency declarations that will determine and develop possible new Lyme Disease diagnostics (that will not be validated using the CDC Lyme Serum or Test) and Lyme Disease treatments.
The federal health agencies saying “we don’t issue Public Service Announcements” is not an acceptable excuse for their not issuing the following statements.).
The non-federal TBDWG members must insist that public comments are not ignored, left out of the final report to Congress, and not be summarized in white-washed statements so their meanings are no longer perfectly clear.
The non-federal TBDWG members MUST write minority reports and know to not cave to the pressure of “we need to build bridges” as that pressure is applied so that the truth about Lyme Disease is not divulged and the manipulation of Lyme for coverup and profit can continue. Do not, in the name of “building bridges,” vote for manipulated wording such as “the science is disputed” (it is not disputed by anyone that understands Lyme Disease that Lyme results in serious disabling illness – the federal health agencies, IDSA, and ALDF just use flawed statistics to create controversy when none should have existed). If a TBDWG member does not vote with the majority, they can write a minority report and in that report they can document the facts the federal health agency representatives have successfully kept from the last 2 TBDWG reports. Non-federal representatives, do not fall for pressure to come to a consensus – the federal representatives MUST represent their agencies (they’ve told us that several times) and their agencies 1.) have to never-admit that Lyme medicine has been greatly manipulated so that the first Lyme Disease vaccine could go to trial and appear to work in 1993 and 2.) so that big Pharma can continue to make billions off of medicines used to treat symptoms of the millions suffering from the 300+ illness and cognitive and mental health issues that result from Lyme Disease. In the 2020 TBDWG meetings, the CDC representative said long Lyme Disease was a medical travesty but the CDC’s Lyme agenda is to only be concerned with acute Lyme – ‘because there are more of them, they matter more, and they are less controversial.’ With 40 YEARS of the CDC telling doctors not to test and if they do, requiring they use the CDC’s acute-only 71% false negatives test resulting in millions being told they don’t have Lyme when they do and causing those people to become long-term Lyme cases - there are not more acute cases than long-term cases. How can the acute cases (that can be prevented from becoming long-term Lyme cases by health agencies simply informing doctors and patients they need to adequately treat Lyme Disease and co-infections) matter more than the millions of people the CDC, IDSA, and ALDF have caused to become chronically ill with the 40 years of misinformation and CDC’s “Don’t Test/Bad Test” Lyme directives ? And the only reason there has been and is any “controversy” over Lyme Disease medicine is because the federal health agencies along with IDSA and ALDF have purposefully created that false-controversy by insisting that it is a fact that Lyme is not persistent (which is not true) because patients treated for a short time in a flawed study no longer tested positive on the CDC’s acute-only and 71% false negatives test (that is only valid according to the CDC itself, in weeks 4-6 after initial infection/bite.) The CDC’s TBDWG representative claimed the CDC’s Lyme agenda is for acute cases because there are more of them, they matter, and its less controversial (and claimed that the CDC test works ‘because it tells us what we expect’) - not 10 years ago, or 5 years ago, he claimed it in 2020, in the very last working group! Has the federal Lyme agenda changed since then? It has, in that the federal representatives now want to push the new Lyme vaccine that is currently in trials and benefitting from the failed CDC Lyme test (which will, with its 71% false negatives, make it appear to work), but their mandate from their agencies will remain the same - keep the agencies’ past deeds covered up at all cost, including the cost of millions of lives. Non-federal TBDWG members, do not forget who you have dedicated your time and efforts to helping and who it is on the TBDWG that you are basically negotiating with – you must not negotiate! You must pursue that the truth, the full truth, about Lyme disease be documented in the final report to Congress, not a building-bridges-negotiated version of Lyme Disease and Lyme medicine that is not true or fully true. Vote against the federal majority and write minority reports. Don’t be conned into thinking that is not the right thing to do – it is.
The non-federal TBDWG representatives must document that the CDC and big Pharma representatives (of the ALDF) reversed Lyme Disease medicine science and made Lyme Disease Testing fail in 1993 so that the 1st Lyme vaccine was able to go to trial and appear to work. Prior to 1993 it was already determined and been published that Lyme was a serious and disabling illness that results in complex multi-system illness causing neurological, immune, and neuroimmune consequences, that borrelia infections persist, and that an antibody test for Lyme Disease would not work. The CDC and ALDF recruited researchers who then reversed themselves and Lyme medicine facts and their previous true statements and conclusions about Lyme (with no reasons cited). They then got the FDA to approve the CDC Lyme Disease test (which they knew would fail many and for which the patent holders were employed by the CDC). Although they knew the antibody test would not work (effectively determine the presence of Lyme/ Lyme infections) they pursued its being approved by the FDA because the 1st Lyme vaccine trials needed a test before the vaccine could go to trial and if the test did not identify Lyme then it would appear the bad vaccine worked. Furthermore, the CDC has continued to push the false-science devised just prior to the 1993 Dearborn meeting when the CDC and ALDF representatives made Lyme testing fail. For the past 40 years the CDC, ALDF, and IDSA have denied the real Lyme science that has shown Lyme is a serious disabling illness and that the CDC test 1.) does not detect most Lyme acute Lyme cases (only 29%, BALF, 2020) and 2.) certainly does not detect long-term Lyme Disease (the CDC itself has acknowledged their test does not detect Lyme beyond 6 weeks after initial infection.) The CDC, ALDF, and IDSA’s telling doctors and the public (for 40 years), that Lyme is rare, only in the NE and that if they tested patients, they must use the CDC Lyme Disease test (they haven’t made doctors understand its “for surveillance only”) has cost millions their health, finances, relationships and lives. The federal health agencies’ TBDWG representatives have told us their TBDWG role is solely to represent their agencies and their agencies agenda. That agency agenda is to keep the above a secret from the public and the medical community. The non-federal members MUST document this history. In a 2007 email that has been widely circulated after being obtained in a FOIA request, the ALDF president wrote to two high ranking CDC officials and many of the “Lyme researchers” instrumental in 1.) the 1993 Dearborn Lyme case definition fraud and in 2.) keeping the facts about Lyme disputed for 40 years. (Those email recipients and colluders are still instrumental players in the Lyme medicine arena.) In that email the ALDF president called for a “socio-political” assault (socio-political was his word) on Lyme patients and doctors because the science wasn’t on their anti-long-Lyme side (he admitted the science was not on their side). The federal agency-need to keep the above from becoming public knowledge has been the driving force that has kept and still keeps Lyme medicine from evolving. Facts known about Lyme pre-1993 are disputed as controversial still to this day because of the federal agency-need to keep the above hidden. We MUST have disclosure for Lyme medicine to finally be allowed to evolve.
Sandra Turbyeville
I have Alpha-Galactose Syndrome (AGS/Alpha Gal) and MCAS and I am airborne fume reactive. Alpha Gal, a tick borne illness which causes an allergy to mammals and all mammalian by-products. Some people have mild symptoms, midline, and then some worse than others and mine is over the top... go figure.. bad. I react to even a trace, contact, and to airborne particles (and you may be thinking meat but no it's much deeper). Alpha-gal is a sugar molecule rather than a protein. So not only is every single thing I consume (all the way down to bottled water, because most is filtered through bone char) everything has to be very carefully looked at BY ME I have to figure out what I can have and the many things I cant. The ingredients aren't regulated or required by the FDA to put that on the label as an allergen and they are hidden with so many strange names that it is next to impossible to be safe unless you go back to the very basics of eating.. SO us with AGS have to learn all the possible things to look for, hope we can remember the majority and proceed to the best of our self taught ability.
With airborne reactions aka fume reactions... think how the grease settles around the kitchen to places it couldn't have splashed. When I breathe that, I react pretty fast however it does not stop at something so simple... A cold ham sandwich 20 ft away I reacted. My children can't bring in fast food in the home now or in the car where it will leave possible residue for the next time I get in for a drive around the block. My family can no longer cook anything other than my restricted eating in our home. I have to have one of my kids walk out to smell the air before I can step foot outside in case a neighbor is BBQing. Now... The symptoms of my reactions whether ingesting or being exposed and severity are all over the place and normally if I have a reaction now that I am clean eating and our home is by-product free for the majority(as there have been a few items missed in this learning experience)... My reactions will put me DOWN for 3 to 4 days normally now.. NOW these past 6 months while I was consuming this poison to my system and in everything around me it had me barely able to get out of bed or stay awake much... I had no idea.. I KNEW something BAD was wrong I seriously thought cancer must be back and I was gonna lay here and die before anyone ever figured it out. My reactions range from Rapid heart rate, Heavy chest, chest pain, tightness in the chest, feel like I can't get enough air, throat tightness, numb sensation in my throat and mouth and lips, light headed, dizziness and confusion, brain fog, brain stops working like I am checked out, severe internal abdominal swelling(I have numerous times seen my gyno oncologist who did CT, MRI and Ultrasound with nothing no answers), nausea, severe burning throughout my body whether it is my chest, arms, abdominal area, legs, my emotions can go haywire from extreme crying uncontrollably, get very agitated/angry, and it's even taken me a place I have never been in my life to deep dark scary places emotionally, severe nerve pain in various areas of my body, vision changes such as both blurred or double, panic or extreme anxiety (which for 30 years of my life was labeled just as that and the quality of my life, my childrens lives my families lives have all suffered and has been taken from that). Severe Vulva/Vaginal itching for over a year I went to my gyno oncologist several times as it woke me every night me clawing myself and so many times I had my NP look to see nothing, I even went to my dermatologist surgeon who saw nothing so no relief no answers, being so sick I have been bedridden off and on in my life and for the past 6 months totally bedridden.. Joint pain ..I have had a couple of hives... The HOT burning in He!! that I felt internally and thought it had to be medical menopause(yet it was over the top extreme and not thought to be that but no one had answers).. The hot burning scalp that I could feel to the touch.. This isn't the first time I have been bed ridden in my life. I have spent most of my life in bed and struggled to get up and be a mom. I was a full time single mom(no father for my children) and too many times I was absent yet there with my children just not able to function. I taught my boys at a very young age how to do life skills for all the many days I couldn't. I have been disabled since age 25 with severe panic anxiety disorder and depression. .Throughout the years I have been diagnosed under the umbrella of many other things including IBS, Chronic Fatigue Syndrome, Fibromyalgia,Trigeminal Neuralgia thought to have had MS but no... these just to name a FEW... I started on the wild goose chase with my heart at age 17 for my first stress test. I HAVE LIVED in dr offices specialists and rode to the ER in the ambulance so many times thinking i was dying no telling how many times in my life they all knew me for many years... my life could have had quality. My life as a mother could have been everything I wanted it to be for my kids but instead the majority of times I was home sick and missed all of the fun times. The important times. I was sick... now my mother feels I have had this possibly since birth but most definitely since kindergarten as anxiety hit hard and she recalls vividly whereas I have little recollection. What a different life I could have had and given to my children and family. I loved the few years I was able to work. I loved it. I finally at age 43 obtained 2 bachelor degrees from college with high hopes of healing. It took me 23 years to pull off a 4 year degree. And yet then we had many major life devastation and then I got cancer. Cervical cancer in 2019 with many complications where I fought for my life hard.(I often wonder if my complications were AGS related whether medications given or the wrong stitching, the thoughts are endless as to what could have made it even worse etc) To Now I am fighting once again in a different way AGS now I finally know as I was diagnosed 46 days ago. . The list just goes on and on.. I look back on times in my life where I turned into superwoman and I can now connect the dots.... one of many examples is when my daddy was dying with pancreatic cancer I loaded up my kids and I took sole care of him through his dying breath. The sickness was absent as were the panic attacks. . Now I understand. I couldn't eat... I ate very very little through that whole time so my reactions were minimal. Many bad events went that way in life, that's just one. Now on the flip side there were other life changing events where I ate my emotions and I was put to bed down for the count no matter how serious or how much I was needed I was so sick. . Now looking back I clearly see and I know I was having reactions. If only I would have known years and years ago.
Here's the thing... I dont have the common reaction symptoms but I have a MAJOR list of all the uncommon ones.. AND symptoms to reactions are ever changing and being added.... Several of the ones that I do have are the very uncommon anaphylaxis reactions and the tickborne committee is trying to get them more known in the medical community so that they will know if you can't find something like with for example the severe vulva/vagina itching .. your patient may be fighting a severe reaction or anaphylaxis.. .. They are trying hard to get Alpha Gal KNOWN as well as so much of the medical community has little education about this syndrome which now that I am reactive and know what it is. It's terrifying to think of needing real medical attention and the chance of being given something that could potentially kill me like only one of many examples would be the wrong type iv or if I were to need something like Heparin(which would likely be potentially deadly) but Drs do not know and we are expected to learn all of this life saving information on our own and navigate for ourselves. This is because simple changes to add this to the regulations as listed allergens has not been done by the FDA. We are left to learn it all and hope to be alert, awake and ready in an emergency or take the risk of being treated with something that we are allergic to and die. Recently I called the paramedics to come here and as I couldn't take the heart racing I was on day 3. I was afraid to get help knowing the risk at a medical facility and just wanted to know for certain i was in normal rhythm and they checked with an ekg and I was in normal rhythm. At that point I came back in and rode it out.. the paramedics said we googled it on our way and saw it was a meat allergy but that's really all we know.... The many ER trips, doctor visits, specialists, the hospital stay in the cardiac observation unit.. NO one recognized that hey EVERYTHING every single test for her heart is checking back great and has for MANY years... Stress test, heart monitor, echos, (and I have had several over the years of all these) blood workups over and over and over for years and years.... NO ONE recognized HEY she's HAVING A REALLY SEVERE REACTION>>> NO ONE.... to ANY OF THESE NONE out of the mile long list NONE...In fact at my last cardiologist appointment this summer he looked at me and said... you have been doing this for years and nothing is wrong with your heart.. Do you know the money wasted? I felt myself feel like i could fall on the floor. I couldn't believe what was just said. I said I want another opinion. He said well you haven't seen an electrophysiologist. I will put in a referral. I then had an appointment with my specialist Dr Tina Merrit who specializes in AGS. I told her of the cardiac issue and she immediately knew it was a reaction. Then with the electrophysiology appointment he confirmed again yes it's a reaction not true cardiac but presenting itself as such. I already had my AGS diagnosis at the time of that visit and tried to explain to him what AGS is. It's been a 30 plus year fight with umbrella diagnosis one after another after another...... I KNEW something would someday be found... or at least I prayed that... THESE last 6 months I came to a halt... Well guess what other kinds of REACTIONS I have... STRESS that causes well any or all of the above because the Mast Cells and histamine responses in my body go NUTS>>>> whew.... yep Example.. I know what was happening in April/May it was mom so ill and with Jas my fiance too much stress.... I felt something wrong with my body with my heart and I could tell my heart was on the edge ready to do its crazy thing of going to 150 if I even try to roll over in bed kinda deal normally lasts for around 3 days..... yep it did and that's when I was admitted to the hospital with no answers now could it have been eating and stress of course it's unsure at that point.. Well I was under extreme stress recently with Jas and once again since diagnosis I felt the heart not feeling right and at the height of the stress bammm and I had been in my bubble with no other way to have reacted so the heart reaction hit and it just built from that to another to another symptom or reaction but they all stick around and keep me company for a good 3 days.. so yep even extreme stress causing a TRUE reaction all linked back to mast cell and AGS ... how have I now after all these years of not knowing these were reactions.how am I so certain now? WITHIN 4days of clean eating and cleaning out our home it was like a miraculous healing occurred. So when any of the many things I listed as a reaction started to happen was right after accidental airborne exposure as we are still learning and I took my reaction rescue meds it lessened sometimes completely resolved other times it still will hang on for a few days but the rescue meds (Diphenhydramine HCI) it is lessened and shorter and then finally fades away and right back I am to the newly found me. What a miracle. .... How many other people are out there suffering losing their quality of life for years and years searching for answers when it's one simple blood test to find AGS if only the medical professionals could realize this is an area that needs their attention and them to be educated in.
Now I have recently been diagnosed with MCAS which just is a bigger bang to this all especially in regards to fume/airborne reactions and my knowledge on this one isn't even started yet... I am full of AGS and too tired to learn right now.. But the symptoms somewhat over lap is what I am understanding this far...
With AGS... Mammalian by-products are literally in 99 percent of the normal products we buy from food to laundry things, soaps, air fresheners, cleaners, toothpaste, deodorant, makeup, hair products, lotions, toilet paper paper towels ... the list is FOREVER long....
wipes, cologne, leather, new asphalt, car fumes and most anything can trigger a reaction ever more so with MCAS and with the by-products that are literally everywhere and anywhere...........
I am really TRYING to be a trooper here... BUT how long are we going to have to be our own food safety guide, learn everything on our own through such in depth research. I feel horrible for the people who aren't capable for whatever the reason and will continue to suffer greatly due to not being able to keep themselves as safe as possible. What would it take? Proper allergy labels by the FDA. How long will we have to be our own Doctors/Advocates and hope to be able to self advocate in case of an emergency? Until medical professionals are made aware and educated about AGS.
I have had some really good days in the past 46 days of this journey ... BUT there have been some slips to where I had airborne reactions and I knew exactly the culprit just a lil too late... BUT... on the really good days... I WAS BACK except for the deconditioned part of me... BUT>>>> this is what I now face... I am in a bubble ... AGAIN..... it's like I have wanted answers... I got them. I prayed and prayed for 30 years... I really amped up the prayers these last 6 months as I laid here and thought it was the end... I HAVE ANSWERS after all these years from one blood test and one NP Charity Hall had heard of AGS and took the chance to run yet another test>>>> on the really good non reactive days I don't even have anxiety to speak of WHAT some but nothing over the top WHAT?! I have been under EXTREME life stressors on top of this during this newly found AGS so I had every reason to have not just anxiety but normally I would have been having panic from wake to sleep. I would have been fighting it with everything in me and many other symptoms that changed from day to day... BUT.. when not reacting.. almost everything is NON existent .... BUT... how does one live life in a bubble when they now on days feel good, have a working brain again and feel like hey I AM NORMAL.. but wait I am fume reactive over the top... so I can't just go and do even though I don't feel the extreme panic/anxiety everyday like for 30 years .. Yes I have some but it's not crazy out of control... I am not bedridden and sick everywhere. YET... here I sit trapped... WHEW>>>>> it's a lot to take in... it's a whole lot.. NOT just for me but for my entire family and if anyone were to want to come here lol we never have visitors.. but.. there is a whole protocol that must be followed.. FUN right.... ok Idk where this type of life could possibly take me.. I am hopeful that new meds will be added and at least lessen the reactions.. I am hopeful that I never have a full blown anaphylactic shock although reality is 60% plus do and many live with it way too often fighting for their lives down to their airway being swollen shut.. This... THIS.. is the new me and my new journey... and my kids and moms journey as well... JOURNEY IT IS... SOOOOO If you all could just make a lil sticky note with my name lol put it where you see it morning and night.. I NEED THOSE PRAYERS>... thank you... Many blessings to you all and not only get your paps yearly.. let's add on there to always wear that tick repellant Lord only knows how this will end. I am so clueless from the time I wake til I go to bed as to what to do now... I don't have a wealth of energy yet but hope it comes where I can get up and clean or cook... I haven't been much of a TV watcher nor am I a reader.. There is only so much fb one can do .. I lay here and look at my walls.. can't over stress so this is really a challenge. Cant use my paints, no crayons to color, no markers to draw why? by-products.. I get really down some days now that I am alert and clueless on how to pull through this.... I did buy a respirator that I hope and pray will be my saving grace in public if I have something to do outside of my bubble, but this is just winging it because the Doctors do not know or have the answers so I am on my own to figure out HOW now do I live..... I thought my life had always been crazy for the past 30 plus years with this wrong and that wrong and over the top anxiety and panic... THIS was my trade in... THIS is over the top crazy... IF you really read this to the end.. You must care and I thank you If you have unexplained symptoms PLEASE have your doctor order a test for Alpha Galactose Syndrome (watch the spelling of that G word as there is a word that is really similar but totally a different thing) and a full tick panel.. simple blood draws.. LORD give me strength in everything happening in life right now.. Give me peace and strength God.. (I have attached pictures of my mystery of the internal abdominal swelling that was never figured out which went away and only has returned one day when I walked in the kitchen when this was just diagnosed maybe a week and we were all still learning and my kids had ordered a pizza I walked in to the just delivered pizza and in a matter of minutes started to swell) ANYTHING and everything I give full permission to be shared far and wide with whomever. We need HELP in fighting AGS!!!!
Sincerely,
Sandra Turbyeville
Anonymous
I am writing to give an account of my husband's continuing life threatening battle with Alpha Gal Syndrome. He has been allergic since 2002. It took a number of anaphylactic and giant hive reactions before he was able to figure it out what it was. Of course back then nobody had heard of it. Over the course of the next decade his health declined in every system. Skin inflammation, arthritis and joint pain, erratic blood pressure , neurological issues and myclonic jerking, apnea, fatigue, digestive issues and so much more. He saw so many specialist and no one could help him but to try out numerous medications. We suspected Lyme disease but the tests were negative. He contracted Rocky Mountain Spotted Fever in 2013 and had a difficult time getting a diagnosis and nearly died. His tests confirmed long term antibodies so we believe he may have had a some post infectious issues as well as a new infection.
He finally found out what his meat allergy was as AGS was becoming known as a disease from a tick bite. His first allergist said his titers were the highest in KY at the time. His advice was an Epi pen and to not eat meat. He was told dairy was fine if he did not react. In 2014 he had to have neck surgery as his myclonic jerking in his neck and limbs being uncontrolled for so long had caused his disc to disintegrate and push a bone spur into his spinal cord. After the surgery he had complications. He had extremely high blood pressure they could not control, terrible pain and lower limb paralysis. He stayed a week in hospital until he could walk 3 steps. He saw a cardiologists for a battery of tests after that but his heart was fine. And he continued to regain use of his legs. We now believe that some foods or mammal based ingredients used in the surgery may have caused the reaction.
It has been more and more health issues ever since. Autoimmune iritis, seborrheic dermatitis. He's had carpel tunnel surgery and septum and turbinate surgery and has a bipap for mixed central and obstructive apnea and severe allergies and asthma. He suffered from severe fatigue for several years and they finally ran a battery of heart tests when he had chest pain in fall of 2020 and he was having a heart attack and had to go straight to hospital! Because of his AG allergy that hospital in Evansville Indiana could not perform the surgery and sent him by ambulance to St Thomas West in Nashville Tn.in September of 2020. He had to undergo steroid therapy and blood pressure stabilization while the surgeon consulted with outside experts who had done the surgery with steroid intervention with the Heparin. He had 2 arteries 100% blocked and 2 arteries 75% blocked. His heart had gone from fine to 100 % blocked in 5 years. I joined the AG Facebook groups at that time and found out so much we didnt know about his allergy. Especially that he was very allergic to dairy, AGS causes inflammation in the heart and arteries and other organs and that it was a medication allergy as well.
After such a scare and quick education we stopped all dairy, removed as many mammal products from our diet and household products and went on a strict plan, but were unable to get any doctors or allergists to agree he needed compounded medications. So many contain mammal. The Vanderbilt allergists agreed he needed to remove gelatin caps but so far his pharmacist has been unable to get it through insurance to replace the gel caps with safer substitutes. Twice in the last 2 weeks we had his GP send in the correct safe prescription only for the pharmacy to fill gelatin containing meds instead. The excuse when I call is there isn't a substitute There is! I looked them all up and called manufacturers. And even so he didn't even bother to say hey this one has mammal still!! We thought we were getting the new safe meds finally after two years!
Although his initial heart surgery went well originally without complications he landed un the hospital again with pericarditis and pleural effusion a few months later. They found he had an inflamed pancreas which has since become chronic pancreatitis and they have no AGS safe medications for that. He saw 4 different doctors out of town before he was told they cant do anything for him except watch him closely. I try to help that for him with diet as well. But it is a full time job to find safe foods for AGS and his health conditions. Both of those major hospitalizations I spent hours and hours calling from afar during the early pandemic to make sure the dietitians and nurses understood the full implications of his allergy and helped both hospitals develop an Alpha Gal free diet. I educated so many who had no clue each shift change. The bypass surgery had him in hospital 3 weeks by himself since he was a complex case.
This summer we both got bit on the ankles by baby ticks and broke out with Rocky Mtn Spotted Fever.( We hardly go outside much anymore because he does not tolerate heat and is afraid of ticks. ) But alas life and we were in a hurry and just running through short grass to our car on a hot day). But after that his AGS reactions worsened and he started having "spells" of low BP and 02 and incoherence , asthma and low voice and staggering. I called the ambulance only for him to be treated as if he was a drug addict because of the meds he takes for his myclonic jerks. They go straight to his jerks and he was not overmedicated..they checked. He stayed 12 hours in a tiny ER room by himself without a bipap available stopping breathing and setting off alarms only for me to have to shake him to breathe for hours on end and no one checked or was around to help as they were assuming the " machines were malfunctioning " . I was irate and scared for him . They took away all his meds even the ones dangerous to stop cold turkey and his BP meds for 2 days. They kept trying to feed him mammal foods and had nothing safe so I had to bring him food from home every meal 30 minutes away. This was our local hospital the ambulance has to take us in Hopkinsville KY. After 2 days and his BP shooting so high they had to IV push meds to get it down only for them to just release him to home with no diagnosis. No stroke , no OD.
After some consultation with the AGS community we deduced it could be mammal containing medications were causing symptoms of anaphlaxis just not going into full blown anaphlaxis. So many people had had the same symptoms as they ate the sneaky symptoms before a full blown attack. It happened one more time and we realized for sure it was a new med with gelatin . I gave him inhaled steroids and antihistimines and watched his vitals until he stabilized. He stopped taking the gelatin containing medicines (even though he needs them because it's too dangerous). Those last week on the 2nd trip to the pharmacy for the new AG free prostate med he was getting approval for (he trusted it was right because he had just returned the gel cap vitamin D for the tablets a couple days before) He took one dose.I just thought to run it through the NDC database only to find it was another gel cap and not cellulose! He was driving ! So I luckily had and gave him steroid inhaler and extra antihistimines before he could pull over and change drivers! This is our long time small town pharmacist. They know his allergyt but just dont get it and frankly the doctors don't either. I cannot understand why even his Vanderbilt allergist doesnt think that all the other mammal in his meds such as lactose wont cause a problem. He has 30 medication for all his health problems. Most that dont have gelatin have stearate from mammal or lactose. We are desperate for help but at present have no doctor or allergist that will write him a referral to see an AG specialist out of state. And it wouldn't be covered by insurance. Plus all the travel costs. But we cant go on like this. We are festival artists and self employed and finally trying to do a few shows. We can't eat out, the Bbq smoke gives him asthma and the sane spells and he has to take steroids and he is so exhausted . We tried and failed to get him Disability about 3 years ago and are waiting 2 years for them to review his appeal before we can try again so he is trying to go on and live the best he can. We have to work. We have a teen daughter with autism who require special accommodations as well. He's 59. But it's no quality of life and the medical gaslighting is continually demoralizing. He has seen 100s of doctors and only a handful have fully understood his Alpha Gal Syndrome implications. We study this through medical research papers and articles and watch his conditions very closely and ask for tests (that are always needed as it turns out.) Not that their cures help as much as harm. The medical and pharmaceutical and medical insurance professions as well as the FDA product oversight needs educated on this and fast. Mammal free medications need to be the standard and easily identified. One should not have to take months to identify the ingredients of the particular medications only for it the information shared by the patient or advocate to be discounted for cost or expediency. The quality of life for a person with this condition as well as their family's wellbeing is greatly affected. It has been traumatizing repeatedly and infuriating that a lay person knows more about what it does to their body than a medical doctor. I help my husband in our art business for pauper's wagers and spend my free time researching and planning to keep our family safe. I need help from people who can do something about this on a systemic level.
Thank you so much for your consideration of these issues. It's alot for us. I applied for a speaking role as well. Please consider my application. I would like to reiterate how difficult the medical condition management and medication safety problem is for Alpha Gal is when the medical professionals are not up to date with their knowledge. Thank you for your attention to this serious issue that is getting to be a bigger problem every day.
