This webpage displays the written comments received by the Tick-Borne Disease Working Group for the August 2021 meeting. The opinions expressed in each comment displayed on this webpage belong solely to the author of the comment and do not necessarily reflect the opinions of the Department of Health and Human Services (HHS) or the Tick-Borne Disease Working Group. Any information provided in the comments displayed on this page has not been verified by HHS.
Anonymous 1
I never imagined I'd be writing this. I never imagined [redacted] University, at which numerous friends practice medicine and which I've always trusted without question, could fail my family and me so tragically, forever altering the course of our lives.
My diagnosis of Rocky Mountain Spotted fever came in August of 2020, three months post-infection after multiple misdiagnosis at [redacted].
And everything came crashing down.
I felt sick enough to brave my Covid fears and present to [redacted] Urgent Care in May of 2020 with a fever, dizziness, episodes of racing heartbeat, sore throat and diffuse abdominal rash - all Covid symptoms, however our family had been completely isolated since early April. Multiple Covid tests came back negative.
The [redacted] Urgent Care doctor asked about tick exposure -
I told her I'd been working remotely, homeschooling my young kids and getting our active family out for nature hikes as much as possible - we were excited to find a new hike near Chapel Hill that spring and had spent a lot of time in the preserve throwing sticks for our dog and letting the boys climb trees and explore.
There was tall grass in the area in addition to wooded areas, and we followed the Covid protocol at the time by stepping off the path to let others pass with plenty of room.
I never saw a tick on me, although my husband and oldest son both pulled ticks off their legs on the car ride home. We checked ourselves and the boys for ticks nightly after hikes and all took showers.
The [redacted] Urgent Care doctor did an EKG, another Covid test (negative) and said she suspected it was tick related or a thyroid issue. She did not prescribe antibiotics or run bloodwork.
Because I had a fever during Covid, I was unable to visit my [redacted] primary care physician.
I came back to Urgent Care a week later: Sicker, my fever going up to 102 at night, feeling like I'd been hit by a truck. At that point I was prescribed 10 days of the antibiotic Doxycycline and told to see my regular doctor if I didn't feel better.
I dutifully took the antibiotic for 5 days then called my [redacted] PCP for advice - in addition to the fever, it now felt like I was having an allergic reaction with electrical sensations racing through my body, I was having shortness of breath just reading out loud to my young song and waking up gasping for air. At times it felt like my throat was closing up.
My PCP said if my illness were tick-related, I would feel better by now (after 5 days of antibiotics). She said I could stop taking the Doxy in case I was having an allergic reaction to the medication.
I was still feverish, nauseated, dizzy, and now experiencing intense organ pain, muscle and joint pain, weakness and continued brain fog. My symptoms kept fluctuating and changing.
My PCP finally saw me in-office and diagnosed me with mono.
Over the next 2 months I also experienced burning nerve pain in my extremities, headaches, light and sound sensitivity, intractable insomnia and multiple rashes.
The diagnosis of mono seemed implausible at this point. I was panicking, unable to care for my kids during a pandemic, forced to stop working.
On the advice of a friend, I went to [redacted] infectious disease early August, 3 months after my symptom onset. The [redacted] doctor heard my symptoms and drew blood to test for two diseases - Erlichia and Rocky Mountain Spotted Fever, the two most common tick infections in NC - casually telling me at the time, "if one of these does come back positive, we can't treat you at this point."
Almost two weeks later, the Rocky Mountain Spotted Fever test came back positive.
The next 6 months were a living nightmare.
Despite having positive RMSF antibodies and almost every clinical sign of the infection, both [redacted] and [redacted] refused to believe my ongoing symptoms could be related to that infection, after initially saying they could be from that infection.
My doctor sent me to the hospital late August for a battery of painful tests after I was so weak I couldn't walk up stairs or remain conscious.
They couldn't find anything wrong in my bloodwork or scans. I was told my symptoms were psychological. My RMSF antibodies were still positive in October.
I got physically sicker with nowhere to turn. My family was crumbling, the kids were terrified.
I was now experiencing the sensation of being pulled to the ground, the bottoms of my feet felt like I'd been walking on rocks, my legs and chest burned like they were on fire. It felt like my couches were tilted at an incline and I was going to slide off. Some days I was so dizzy it felt like I was going to fall down in the shower, I had to stabilize myself like when you stand on the deck of a rocking ship.
I've been through intensely painful experiences before, but the level of pain I was in, and the completely foreign nature of that pain, made it feel like I wasn't going to survive.
It feels like every cell in your body is dying.
In March of 2021, after the wave of long-haul Covid patients swept the globe, my [redacted] and [redacted] doctors finally admitted that my symptoms could, in fact, be from my Rocky Mountain Spotted Fever infection and added, "we don't know everything about ticks."
I was told this infection is rare. Since contracting Rocky Mountain Spotted Fever, I easily found 7 people within my contact circle that have also had it. I know almost triple the amount of Rocky Mountain Spotted Fever infected contacts as I do breast and prostate cancer combined. They've all contracted their infection in NC and Virginia.
My best friend has Alpha Gal, so does another friend's brother and a neighbor down the street. Three close friends have had Lyme disease. Every single person I've told about my tick infection has instantly told me about a close friend or relative who's also had one. Many of these people have stories similar to mine and are permanently fighting the infection, disabled in some way, and / or in constant pain.
Up to 500,000 Americans contract a tick-born infection every year. This can happen to anyone.
I have a constant buzzing sensation, as though my blood is carbonated. Most nights I have drenching sweats. My muscles and bones ache constantly and many days I wake up feeling nauseated and in pain, like I'm hungover even though I don't drink alcohol. Some days I have to take a break from work to fall asleep for hours on end, my legs burning and buzzing in pain.
Over the course of a year I was told by [redacted] and [redacted] doctors that my symptoms were caused by allergies, pregnancy, chronic fatigue syndrome, mono, anxiety and depression.
These doctors have recently told me my syndrome is an autoimmune process.
Or that it's not an autoimmune process.
Or that they don't know what causes it.
These doctors practicing at esteemed universities aren't interested in helping me. They can't or won't...or maybe it's both.
My life is forever changed. And should you or a family member be one of the half a million Americans every year to contract a tick-born infection - if you hike in woods or visit lakes or camp or run on trails, if you love nature like I do, if your kids run through the grass in your backyard - there's a 50% chance you won't even notice a small, painless tick bite that will change your own life, or your kids' life, forever.
Anonymous, North Carolina
Anonymous 2
To whom this letter addresses,
[redacted] My daughter was 23 years old when bitten. Now, she is 27. We live in [redacted] North Carolina. My hope for this letter is to share my daughter's nightmare.
My daughter’s story is an eye-opener into “Lyme and War”. As a parent, I watched the devastation of Lyme; it is a nightmare because I was unable to comfort or heal my child because of internal pain and other people’s poor choices or greed. Like so many other Lyme victims and their families, this disease is misunderstood, complex, and highly infectious as it attacks the entire body that debilitates it. With Lyme, the victim looks fine but inside “living with death and despair” no one believes the victim or caregivers regarding symptoms. The physical pain is at times, unbearable; however, many other familiar Lyme stories regarding seeking help but no adequate onset of basic care or treatment and no solid recovery treatment plan in finding a life that once was. To include, the dealing with the many medical traditional/alternative doctors on every medical spectrum level who some have been indirect or direct to mockery, judging, labeling or medical lack of knowledge and/or with ugly mental health terms that even the mental health community does not understand.
Before I begin, please allow me to share my background with all of you so that my creditability will be understood as to why I believe that ticks and other infestation of carriers are bioweapons around communities and the world. I [redacted] have completed a BA in Criminal Justice, a Master’s in Public Administration, I hold certifications in different human services capacities, and I have placed on-hold my degree towards a Master’s in Clinical Mental Health with a certificate in Family and Marriage Counseling (six classes remains, three of which are field placements) also was working towards a Substance Abuse Professional Certificate from the North Carolina State board. I no longer desire to become a part of broken systems in helping and restoring capitalism that pulls triggers from every angle, now Lyme.
Anyways
Why do I believe that Lyme is a bioweapon?
In 1997, before my child was bitten, I had watched, "The Ortiz Iceman documentary" revealed Lyme, the narrated story of Ortiz’s death, and the autopsy report emphasizing that Ortiz, a human, living among the wild with good overall good health, used herbs for healing, but not able to cure Lyme, and ultimately murdered…Years later, my child was bitten in 2018 causing flu-like symptoms to suffering into chronic unexplained issues from the lack of onset basic and routine care that turned into constant visits and racking thousands of dollars in debt and out of pocket expenses. In her 2019 many private Lyme testing reports, the labs revealed Lyme co-infections (subsets of lab bacterias) my daughter, once brilliant and full of life is now in chronic pain/fatigue (somewhat has improved), feels like death but looks great, has unimaginable brain fog, and was considering Lyme suicide which made me dig into tirelessly night of Lyme research, using my personal and professional experiences to healing and training to help advocate to fight for her survival!
Lyme is complex, calculating, slow but steady. With my daughter’s symptoms and description, we met a few good doctors who listened and was compassionate but helpless in knowing what to do and my observation of how her body is being “systemically” attacked and the lack of knowledge regarding Lyme in the community, employment, family, friends, doctors' egos, makes the victims feel isolated to further include the lack of adequate treatment/poor testing, and asinine cost- it's insanity; I was floored to learn how Lyme was originated and how the government has tried to hide or dismiss the truth!
Lyme is a bioweapon by definition as “a biological warfare, also known as germ warfare, is the use of biological toxins or infectious agents such as plagues, bacteria, viruses, insects, and fungi with the intent to kill, harm or incapacitate humans, animals or plants as an act of war.” Working in healthcare and researching, Lyme is nothing like I have ever seen in treatment and/or family herb practices and/or alternative functional care practices in eradicating such aggressive pathogens. Lyme was made for demobilization as history has documented.
I hope that your team fight for Lyme victims around the world. Force doctors to use clinical judgment to provide answers, help to victims, holds the laboratories accountable, and others who knew about this travesty and did nothing regarding this injustice against humanity.
Respectfully,
[redacted]
Death and harm require both responsibility and accountability.
Anonymous 3
I want to share some of my experiences with medical professionals as an Alpha-gal Syndrome patient.
Out of 3 trips to the ER and two hospitals my sister was admitted to, I found one person who had heard of Alpha-gal Syndrome, but not by that name (Red meat allergy). Reactions ranged from interest to annoyance. The intake nurse in the ER, while I was wheezing, seemed quite put out that I kept telling her allergies that weren't choices in the system.
What medications are you allergic to?
Anything with a mammal product.
No, which drug names?
Anything with gelatin, glycerin, more???
No.
There was a question in an alpha-gal Facebook group that still gives me chills. "What feeding tube nutrients can we have. _____ is getting intubated for covid." There was a response within 20 minutes. (Is that good or incredibly sad.) "Kate Farms is a plant based tube feed. It's the only one we found across three hospital systems that was safe for ______."
I had a bad visit with my primary care doctor. I went in asking for bloodwork to check nutrition... vitamin D, iron, B12, etc because I stay tired and my hair is falling out. We've only met one other time since he diagnosed me with AG, so I was updating him on that too with things I had learned and experienced. I asked about some other minor things, ex athletes foot but reminded that I need something with no mammal. These are the alarming things I was told.
*He did tell me something to check out for athletes' foot, but not before saying I could just live with it.
*Reactions are hives, not swelling and GI.
*AG is an allergy to things you ingest, not contact even through broken skin.
*AG is a reaction to meat. I shouldn't be worried about gelatin and lanolin and such.
*Have I sent you to an allergist yet? (Yes, a year ago)
*Are you just consumed with thinking about this allergy all the time? (Absolutely)
*You really need to lose weight. You should have barbaric surgery. (5 times and never approached me about this before.) That's the only way you'll be able to lose weight.
***The ONLY way?
***I came in today to get my nutrition right.
***I'm reluctant to get a pap smear, go to the dentist, or even get my hair trimmed, but yeah. Let's put me in the hospital under anesthesia where I can't advocate for myself. What could go wrong?
I've been with this doctor for 30 years. His son had thankfully mild sensitivity AG and just had to give up burgers and such and got over it. He told me months ago that all he knows is what the allergist taught him then. I've been diagnosed a year and this is the doctor who diagnosed me. I contacted my allergist to recommend another primary care doctor in the area who might be knowledgeable about AG and they said he's it.
Thank you all for your efforts. What you are doing makes a difference.
Thank you,
Anonymous in GA
Anonymous 4
To Whom it May Concern,
I, the mother of my teen son, am about to share the quick story of his recent Lyme diagnosis and the events leading up to it.
To start, four years ago, my then 12 year old son went to a weeklong overnight summer camp enjoying all the fun and activities you hope for. It is in New Hampshire. The last night he was there our phone rang around 2am and it was the camp's nurse suggesting he was having what seemed to be an asthma attack accompanied by a high fever. My husband quickly got in the car and got him home (it was not an emergency situation) yet we contacted the "on call" pediatric provider and we were assured to continue the Motrin and albuterol that we had on hand, despite him not having any asthma type flares in a long time.
I recall asking the nurse was anyone "sick" in his cabin or at the camp that she was aware of and she said "no". I began the motherly process of feeling like something wasn't right, but who am I ? I trusted doctors, nurses, etc to assure me he was fine and this was "viral".
The following year as he was going into middle school he developed several migraines and headaches that was impacting his time at school. I would get calls or emails saying he saw the nurse and received Motrin or saying he needed to go home. It was becoming an issue and concerning. After discussing with a pediatrician we were told to see a neurologist. We did. Only we were told his symptoms were probably due to "puberty". Hmm… ok we left and that was that. The migraines subsided as time went on so we pushed it off. However, the following year he began to experience bizarre gastrointestinal symptoms. We went to see a GI specialist who said bloody stool was probably due to constipation issues …. Hmmm again. These symptoms slowly subsided (with no interventions) and time went on. About a year later he began to complain A LOT about feeling "sick" and tired, that his joints hurt. We figured he was dealing with a low immune system and got him on supplements like vitamin C etc , as well as the fact that he was playing demanding sports. It never went away. Fast forward another year, past onset of covid in society, and he was still complaining despite his demanding sports schedule being cancelled due to covid. It didn't make sense anymore. Why is this kid always feeling sick? Why is his body achy? Why does anything he eat make him feel awful? Finally, after listening to my own inner voice, one day I blurted out, "I think you have Lyme". It just made sense to me in that moment and I felt a strong peace that I needed to seek out a treatment if this was indeed his diagnosis.
I met with a qualified naturopathic provider in my area and upon hearing of the excessive cost of these [REDACTED] tests, sadly I lost my momentum. A few months went by where I tried to come up with ways to either justify the cost or justify not doing it wondering if I was being silly in the first place. One day, my son looked at me and said, "mom, I am sick". It broke me. The money wasn't flowing but how could we not do this? I contacted the provider back and went through with the bloodwork she ordered. We waited several weeks for the results and they were astounding! Not only was he positive for Lyme, he also was positive for a co-infection called Babesiosis. She explained that the fever and "air grabbing" symptoms sounded very much like what he experienced several years prior when he was sent home from camp. He is currently on several antibiotics/supplements and we are hopeful his symptoms will cease. These past few years have been wasted, doctors who saw my son in person shrugged off his symptoms and didn't ever ask deeper questions. Seeing "specialists" made sense at the time to discuss specific issues but what was clearly lacking was an approach of listening to the whole body. The reality that a kid in New England had a high fever in the summer (at camp) when no one else was sick and then developed symptoms for years after and not one doctor mentioned or suggested Lyme concerns me. I can only hope that the medical community can get on board with viewing Lyme diagnoses as worthy to test, question, and treat. No one should have to fight this journey this long , while those we trust in the process shrug their shoulders.
Thank you,
Anonymous
Pamela Andrews
I am from Salisbury, Maryland, president of the Lyme Disease Association of Delmarva (LDAD). I am a founding member of this organization which was incorporated in 2003 as a non-profit. During our 18 years in operation we have provided educational and advocacy services which include, but are not limited to, the following:
1. Monthly educational meetings open to the general public from April 2003 until March 2020, when the Covid-19 pandemic caused cancellation of public meetings. During the seventeen years when we provided monthly meetings, attendance at those meetings ranged from about 80 people (when we had speakers with expertise in Tick-Borne Diseases - TBDs) to about a dozen people a month (usually during poor weather conditions in winter.)
2. Testimony regarding tick-borne diseases before Maryland and Delaware legislatures in support of bills designed to provide protection of patients with tick-borne diseases, and medical care providers who have been educated in the complex issues of diagnosing and treating patients with TBD’s.
3. Medical Conferences. The LDAD has sponsored and produced several medical conferences, providing education on TBDs, with CME credits for health care providers. These conferences were held in Maryland, at the Salisbury Fountains, the Cambridge Hyatt, and BWI Hyatt Hotel. Speakers were recognized TBD experts from across the nation. Attendees also came from across the nation, as far away as from Florida, New Orleans, Washington State and Canada, and usually numbered about 120 health care providers per conference.
4. Spokespersons before media and community groups as advocates for patients with TBDs. Members of our Board of Directors have formed a speakers bureau to speak before community groups, print media, radio and TV to educate the public on TBDs.
Why are there so many advocacy groups for patients with TBDs? As a career choice, I had no interest in medical issues. (I was program director for a NPR station for 25 years -- a career in classical music, news and information.) However, catastrophic outcomes with TBDs, by family, friends and other residents of Delmarva, made me realize someone had to take a stand against how these citizens were being treated by the medical community in general.
In January of 2003, a Lyme literate physician came to Salisbury to speak about tick-borne diseases. I went to a small church in Salisbury to hear his presentation, and was surprised to find the church, with seating for about 300 people, had standing room only for the event. I thus discovered that residents succumbing to Lyme disease was not isolated events of bad luck. So I approached the local folks who organized the event to suggest we should form an advocacy group to become more educated on tick-borne diseases. In short, Lyme disease advocacy groups spontaneously formed all over the nation because tick-borne diseases were not being adequately diagnosed and treated by mainstream medicine.
The Lyme Disease Association of Delmarva, Inc. (LDAD), formerly the Lyme Disease Association of the Eastern Shore of Maryland, has met with thousands of patients since our inception. We have been amazed and disheartened to hear, over and over and over again, the stories of how patients with TBDs have been misdiagnosed, under-treated, dismissed, and even mocked by the medical community.
As a case in point, in the early 2000’s I asked for, and was granted, permission to attend a seminar on Lyme disease which was sponsored by a medical center. The speaker was a well-known physician/researcher from the Baltimore area. During the course of his presentation, he said to the other physicians at the seminar, “Boys, right now as I speak, there is a young woman in this hospital for an appendectomy. She thinks she has Lyme Disease and Babesia! Any of you boys have patients with Babesia? That’s a tropical disease. I don’t think we have any Babesia around here!” His comments were heavily laden with sarcasm, followed by laughter from the speaker and most of the physicians present. Since I knew the patient, I was aware that she had been duly tested for Borrelia Burgdorferi (Bb) and Babesia by a Lyme literate doctor. The young woman being mocked had been desperately ill; lost her ability to walk, and was struggling to stay alive because she was having great difficulty eating. I did not object because I was granted permission to attend the seminar only with the proviso that I must remain silent, not speak and not ask questions.
That event was about a decade and a half ago. Surely, things have improved since then. But have they? I can attest that after eighteen years of advocacy in the world of TBDs, any victories have been hard-fought and hard to win.
What are the main issues faced by the “Lyme Community” today?
Insurance Coverage for Diagnosis and Treatment of Tick-Borne Diseases. Many of our TBD patients have had catastrophic impacts on their financial well-being. If TBDs are diagnosed and treated quickly and effectively, the financial impact may be minor. However, for those with delayed diagnosis and treatment, the expenses of finding Lyme literate physicians followed by years of treatments can amount to tens of thousands, or even hundreds of thousands of dollars. But don’t blame the Lyme doctors. They have to ask patients to pay out of pocket because the insurance companies would not reimburse them for patient care. Blame the medical insurance companies, and the Infectious Disease Society of America (IDSA) because they have influenced the Centers for Disease Control through their erroneous “IDSA Guidelines for Diagnosis & Treatment of Lyme Disease.” The IDSA Guidelines have virtually remained unchanged for decades despite many sources of research, and new information on the chronicity of Lyme disease and persister forms of Bb. Specifically, the IDSA refuses to recognize chronic Lyme disease. Question: Will the TBDWG recommend measures to ensure that medical insurance companies cover diagnosis and treatment of long term and chronic tick-borne diseases?
The Centers for Disease Control and Prevention. When I discovered the impact of Lyme disease on my life, I went to the CDC website to get information. I well remember being incredulous to discover the CDC website quoted the positions of the IDSA, naming the IDSA as their source of information, and even had a footnote on their Lyme disease pages stating that all information from the International Lyme and Associated Diseases Society (ILADS) was wrong. I felt the CDC was acting as a rubber stamp of the IDSA Guidelines. Such obvious bias is unconscionable. As patients with tick-borne diseases, we have felt like the neglected ugly step-child of diseases, even as tick-borne diseases have greatly increased every year. Question: Will the TBDWG make recommendations to ensure the CDC adopts an unbiased presentation of diagnosis and treatment guidelines for tick-borne diseases? Can you ensure that moving forward, the CDC’s first consideration is the well-being of patients and unbiased consideration of points of view on tick-borne diseases other than the IDSA? Can the CDC, at long last, recognize chronic Lyme disease?
Research Funding. We have a great concern that many of the research projects funded by taxpayers’ money have not been designed in a way that objectively researches the issues faced by patients with TBDs. Sometimes, the results of such research seems to “prove” the improbable. As taxpayers and patients with TBDs, we demand that research dollars not go to researchers who design projects to prove the status quo and who support such nonsense that there is no such thing as chronic Lyme disease. Question: Will the TBDWG formulate recommendations to ensure that all research funded by taxpayer dollars be well designed and unbiased, and address issues faced by patients of TBDs?
Protection of Medical Providers Who Specialize in Caring for Patients with TBDs. “First do no harm”. In 2010, the Institute of Medicine hearings in Washington, DC, confirmed the perception that the point of view of the IDSA versus the point of view of advocates of patients with tick-born diseases were diametrically opposed in many ways. I attended those hearings and was quite discouraged to find that when cordially invited, an IDSA representative was unwilling to engage in conversation with TBD advocacy representatives. Indeed, one of the IDSA speakers left the conference room immediately after his presentation and did not bother to even hear other points of view. During those hearings, when comments were invited from Lyme disease groups, I spoke on behalf of physicians who had the courage to care for very sick Lyme patients, at the risk of losing their licenses, and facing the possibility of being charged by state medical boards. I begged that medical boards stop targeting our Lyme literate doctors. We have seen, over and over, the ugly consequences of peer pressure and political backstabbing against brave physicians who were willing to put their careers on the line to care for Lyme patients. The Lyme literate health care providers who were willing explore new avenues that research and patient care opened, are the true heroes of the often sordid saga of Americans left to suffer under the IDSA Diagnostic and Treatment Guidelines, and all medical providers who continue to follow those incomplete and error filled documents. We are also aware of valuable research being done by reputable institutions that have been denigrated by the CDC as not reliable or flawed. Question: Will the TBDWG commit to unbiased evaluation and support Lyme research and patient care by Lyme literate physicians and supporting institutions?
As patients, we know with our own bodies and experiences that the IDSA Guidelines do not work. I speak from personal experience since I also have had Lyme disease, Bartonella and Babesia. I have friends and family members who suffer from TBDs as proven by signs, symptoms and appropriate testing. After 18 years of serving as advocate of TBD patients, it becomes mind boggling to hear the same stories of misdiagnosis, over and over from countless residents of Delmarva.
Since the inception of the LDAD in 2003, we have been fortunate to have community members willing to serve on our Board of Directors. These men and women, so willing to give of their time for the cause of finding answers for patients of tick-borne diseases, have themselves observed the affects of how TBD patients have suffered under the current medical system.
As an analogy, imagine if you will, being in a terrible automobile accident, arriving at the emergency room to discover that part of your leg has been severed and amputated. Imagine if a doctor came to you in the ER and directed you to get up and walk out of the ER, because there is nothing wrong with you. You would probably protest that you cannot get up and walk out because part of your leg has just been amputated. You would certainly be shocked and horrified that the doctor had no understanding of your health dilemma. Though TBSs are not that obvious, that is the sort of horror and disconnect experienced by patients with TBDs when the medical community refuses to recognize our illnesses. Lyme disease patients are sometimes accused of just being mentally ill. But truly, who is guilty of not having reality based thinking?
We are often told by medical providers that we are not physicians and, therefore, we do not know what we are talking about. However, we have learned, with our own bodies, what works and what does not. It has been an enigma as to why some physicians refuse to even consider tick-borne diseases as a source of our illness, while others are open to that consideration. (I have several personal stories of cases in point, but I refrain from belaboring the point.) It would seem that some doctors are very compassionate and know how to listen to patients. Some doctors have had friends or family members who were previously not complainers or hypochondriacs, become very sick with TBDs -- so they have seen, first hand, how devastating these diseases can be. And some doctors have themselves become sick with TBDs and had personal experiences to convince them that patients with TBDs are telling the truth. I asked one such doctor why many in the medical community were so hostile to Lyme patients, and seemed to remain willfully ignorant on TBDs. He responded, “There but for the grace of God go I.”
How is it possible that patients with years, or decades, of tick-borne illnesses have been ignored? It is obvious to us there are powerful forces working against us. The question is, why? Shall we follow the money?
Respectfully submitted,
Pamela S Andrews, president
Lyme Disease Association of Delmarva, Inc.
Robert C Bransfield
Greetings,
The TBDWG has not yet addressed the chronic psychiatric consequences of Tick-Borne Diseases. In order for the TBDWG to fulfill their responsibility to the public it is important to address the causal association between Lyme/Tick-Borne Diseases and psychiatric symptoms. A recent article, “Lyme Borreliosis and Associations With Mental Disorders and Suicidal Behavior: A Nationwide Danish Cohort Study | American Journal of Psychiatry” [https://ajp.psychiatryonline.org/doi/10.1176/appi.ajp.2021.20091347] used a 7 million patient database to unequivocally prove to the most extreme sceptic the causal association between Lyme Borreliosis and any mental disorder, affective disorders, suicide attempts and death by suicide [1]. I have previously identified 388 Peer-Reviewed Journal articles of Lyme/Tick-Borne Disease Causing Psychiatric Symptoms. Download from: https://www.mdpi.com/2227-9032/7/3/105/s1 [2] Now there are 400 references which are available upon request. In addition to these 400 peer-reviewed articles, there are also 73 peer-reviewed journal articles demonstrating a causal association between Lyme/Tick-Borne Disease and dementia [2]. Collectively, this data demonstrates that mental illnesses caused by Lyme Borreliosis is the major cause of disability and death from Lyme disease. The proper recognition of the causal association between Lyme Borreliosis and mental illnesses significantly impacts risk/benefit clinical decision making. The current IDSA Lyme disease guidelines fail to recognize this causal association and are therefore invalid. In order to maintain scientific accuracy and quality of care, all references and links to the IDSA Lyme disease guidelines by US Government agencies must be removed. [3]
- Fallon BA, Madsen T, Erlangsen A, Benros ME. Lyme Borreliosis and Associations With Mental Disorders and Suicidal Behavior: A Nationwide Danish Cohort Study. Am J Psychiatry. 2021 Jul 28:appiajp202120091347. doi: 10.1176/appi.ajp.2021.20091347.
- Bransfield RC, Cook MJ, Bransfield DR. Proposed Lyme Disease Guidelines and Psychiatric Illnesses. Healthcare (Basel). 2019 Sep 9;7(3):105. doi: 10.3390/healthcare7030105.
- Lantos PM, Rumbaugh J, Bockenstedt LK, Falck-Ytter YT, Aguero-Rosenfeld ME, Auwaerter PG, Baldwin K, Bannuru RR, Belani KK, Bowie WR, Branda JA, Clifford DB, DiMario FJ Jr, Halperin JJ, Krause PJ, Lavergne V, Liang MH, Cody Meissner H, Nigrovic LE, Nocton JJJ, Osani MC, Pruitt AA, Rips J, Rosenfeld LE, Savoy ML, Sood SK, Steere AC, Strle F, Sundel R, Tsao J, Vaysbrot EE, Wormser GP, Zemel LS. Clinical Practice Guidelines by the Infectious Diseases Society of America (IDSA), American Academy of Neurology (AAN), and American College of Rheumatology (ACR): 2020 Guidelines for the Prevention, Diagnosis, and Treatment of Lyme Disease. Arthritis Rheumatol. 2021 Jan;73(1):12-20. doi: 10.1002/art.41562.
Sincerely,
Robert C Bransfield, MD, DLFAPA
Angie Bristow
Let's talk about Rocky Mountain spotted fever. It's the most lethal rickettsial tick illness in the United States and has been a reportable disease since the 1920s. In February of 2009, Rocky Mountain spotted fever tried hard to take my life, and I fought back just as hard to save it despite the lack of effort on the part of several doctors. I had never heard of this monster that was trying to take my life! Its venom so powerful and invasive that I could have never imagined how it would try to this very day to destroy what I had fought so hard to save. A killer who doesn't discriminate; we all are at risk! One that is a destroyer of families, lives, hopes, and dreams if not caught and treated early.
Finding a doctor to correctly diagnose and treat you is extremely difficult. Several sent me home and the opportunity for an early diagnosis was missed. As a group, we are often treated unfairly by those that we pay to help us. We have been called names, told that our problems are stress related, in our heads, or suggest that we are faking an illness! If I had cancer, or any other disease, my treatment would be so much better! Those who have fought cancer and a tick-borne disease say that they would rather fight cancer again. This should speak volumes to those who don't have a good understanding of these diseases. I have been told that I probably never had RMSF even with a positive test result, symptoms, and the correct antibiotic used to treat it when the other five failed. This statement alone on my medical records affects every other appointment with a doctor that I attempt to see.
I would like to see these diseases as one of the first to be tested for instead of an afterthought. The general public might not hear about all of those that continue to needlessly die from a tick-borne disease for they often don't make the six o'clock news. Instead, stories of celebrities behaving badly and the like often make the headlines!
In many ways, my story is everyone's story who is fighting a tick-borne disease. I want everyone to know about the potential dangers of being bitten by a tick. Though not all ticks carry diseases, the ones that do can make both humans and animals very sick, and can be life-threatening. I trusted several doctors with my care, and they failed miserably, leaving me to figure this out on my own.
In the beginning, I was concerned for my life when I realized that I, not my doctors, would have to be aggressive in finding help and the cause of my rapidly declining health! At the time, I was forty-eight years old, married, mother to my daughter, Ashlee, employed with Hampton City Schools, a competitive runner for thirty-three years, and in excellent health! I could have never imagined the nightmare that awaited me the night of Friday, January 30, 2009, when my left ankle swelled.
Even though I survived this monster, it cost me my previous life. I'm sure you know what happens when a correct diagnosis and treatment are delayed. On November 3, 2010, I started an online support group, Survivors of Rocky Mountain Spotted Fever and Lyme Disease. At the time of naming the group, I was unaware that there were more than two tick-borne diseases. Over the past decade, I have read enough horror stories (and lived one too) about these diseases that should have us all questioning the oath that doctors take to "First, do no harm." As a result of reading these stories, I have many questions:
1. Why does it continue to be a challenge for doctors to diagnose RMSF? 2. Why do some doctors think that if the patient doesn't have a rash and/or fever, then it's not RMSF? 3. Why do some doctors think that RMSF is not in their state when their state statistics say otherwise? 4. Why would a doctor say to a patient that it can't be RMSF or they would be dead?
I want to know what can be done to change a doctor's response to a patient that they probably don't have a tick-borne disease even though they have a positive test result, a history of tick bites, and symptoms of a tick-borne disease? Isn't this tick-borne disease 101?! Here are some of my thoughts and observations:
Cancer (or any other disease) VS. A Tick-Borne Disease:
* When you have cancer, everyone is on board. With a tick-borne disease, people tend to scatter.
* When you have cancer, a doctor doesn't say it's not in your state. A person with a tick-borne disease hears this nonsense.
* When you have cancer, the doctor typically believes your symptoms and test results. Too often, a person with a tick-borne disease hears that their results were a false positive and suggests several more tests for other possible causes of their symptoms. Referrals to a psychiatrist or other mental healthcare professionals are offered as a possible solution.
* When you have cancer, a doctor doesn't also test you for HIV and syphilis. A person who tests positive for a tick-borne disease is often tested for HIV and syphilis as some medical providers seem to be in disbelief that a patient's positive result for a tick-borne disease is accurate and that their continued health issues must be from something else.
* When you have cancer, your doctor more than likely accepts insurance. A tick-borne disease patient, who often needs to see an LLMD (Lyme Literate Medical Doctor), typically has to pay out of pocket. These LLMD"s rarely accept insurance.
* When you have cancer, people bring you food and/or sit with you during chemo treatments. A tick-borne disease patient is often isolated and goes alone to their appointments.
* When you have cancer, you are treated with dignity and respect. A tick-borne disease patient rarely receives this kind of treatment. In fact, it's often just the opposite!
* When you have cancer, and lose your hair due to chemo, a doctor doesn't say that it wasn't the result of the chemo treatments. A tick-borne disease patient suffers all kinds of effects from the disease itself and treatments. These are often brushed off, ignored, idiopathic, or in our heads. Many deal with hair loss from these diseases.
* When you have cancer, there is an outpouring of compassion, comfort, fundraisers, and help. A tick-borne disease patient often experiences just the opposite and not just from doctors, but from family, friends, and co-workers.
* When you have cancer, it's not hard to find a doctor. A tick-borne disease patient just about has to go "underground" to find a doctor, often travel out of state, and spend thousands of dollars for treatments.
* I read a story about a woman who had fought both a tick-borne disease and cancer. She wrote that she would rather fight cancer again than a tick-borne disease. This should speak volumes to those who are still trying to understand why their loved ones are still sick
* Out of all of the cancer stories that I have read, and all of the people that I know who have survived cancer, none of them have died by suicide. When it comes to tick-borne diseases, I've lost count of how many have taken their life. I attribute this to all of the above! Well, combined with the loss of one's job, income and pain. So many are not believed by their loved ones or doctors, but it starts with the above.
* Both of [redacted] are cancer survivors and they were never treated this way.
I invite all of you to join our group where you can see that the cases of RMSF are increasing and the unnecessary suffering continues despite our cries for help! For many reasons, most will not be able to attend your meeting via verbal or written comments. Even though this is my first time submitting a comment to the TBDWG, I try to represent our group as often as possible, but it's not enough. I survived Rocky Mountain spotted fever and the nightmare that followed! No one should die from a tick bite in the 21st century!
Thank you for your efforts in helping us!
Angie Bristow, Hayes,
Virginia Administrator for the online support group, Survivors of Rocky Mountain Spotted Fever and Lyme Disease
Bruce Fries
I would like to thank Dr. Maliha Ilias of the National Institute of Allergy and Infectious Diseases (NIAID) and Dr. Nahida Chakhtoura of the National Institute of Child Health and Human Development (NICHD) for their work to advance research on congenital Lyme disease.
I would also like to thank NIAID for its section in the notice of special interest for Innovative Diagnostic Technology for Improving Outcomes for Maternal Health. This section includes language that encourages research on “gestational Lyme disease” and the impact of pregnancy on immune response.
Especially encouraging was NIAID and NICHD participation in the April 29, 2021 webinar: Lyme Disease and Pregnancy: State of the Science and Opportunities for Research Support that was hosted by Mothers Against Lyme and Project Lyme.
This is a nice example of how stakeholder organizations and federal agencies can work together to advance much needed research, although there’s much more to do. Fortunately, a lot of new money has been appropriated that can support this type of research. Mothers Against Lyme and other Lyme advocacy groups will continue to promote funding and research opportunities and collaborate with the research community.
On Monday, July 12 the House Appropriations Committee adopted report language for FY2022 that gives a stamp of approval to NIH and encourages more of this type of collaboration.
“The Committee is gratified that NIH officials have recognized the need for further exploration of maternal-fetal or vertical transmission of Lyme disease and the occurrence of adverse outcomes among women with untreated and disseminated Lyme disease during pregnancy. The Committee encourages NIH to intensify research on adverse outcomes related to Lyme disease during pregnancy and to continue to participate with Lyme advocacy organizations on these issues.”
I hope advocacy groups can engage in similar collaboration with CDC to more accurately determine the incidence of maternal fetal transmission of Lyme disease and the impact in terms of adverse birth outcomes for treated and untreated pregnant women.
CDC acknowledges vertical transmission occurs, but has not acknowledged several studies that show links to adverse birth outcomes in pregnant women with Lyme disease who were treated with antibiotics.
In the article, A Systematic Review of the Impact of Gestational Lyme Disease in Humans on the Fetus and Newborn, adverse pregnancy outcomes were noted in 50% of pregnant women diagnosed with Lyme disease who were not treated with antibiotics and in 11% of pregnant women who were treated. (Waddell LA, Greig J, Lindsay LR, Hinckley AF, Ogden NH. PLoS One. 2018 Nov 12;13(11):e0207067.)
This should be a wake up call. That’s almost 1 in 8 adverse birth outcomes for pregnant women with Lyme disease who were treated with standard antibiotic protocols. Adverse outcomes included fetal death, newborn death, and newborns with an abnormal outcome (e.g. birth defects, hyperbilirubinemia, respiratory distress).
I urge the Working Group to increase its attention on congenitally transmitted tick-borne diseases and provide strong recommendations to advance research and improve diagnosis and treatment for pregnant women and children.
Sincerely,
Bruce Fries
President, Patient Centered Care Advocacy Group
Shannon George
Please do more research. From all of the articles I've been reading, there seems to be a correlation between tick diseases (I suffer specifically from chronic Lyme's and AGS) and comorbidity with many other diseases, including Celiac (with which I've also been diagnosed). I also have many other issues. Please do more research!
Eldon, MO
Jennifer Hyla
I contracted Lyme disease during my military service in 2011. Due to lack of awareness, I was misdiagnosed by military doctors for four years, missing the critical early window for effective treatment. My health slowly declined, and I developed the neurological symptoms of Lyme disease, eventually becoming unemployable, and bedridden. It took me asking a civilian doctor for a test to learn I had late-stage Lyme disease.
Being misdiagnosed with arthritis, I was treated with immunosuppressive steroids and NSAIDS, to try and manage the pain of undiagnosed Lyme disease. Left untreated the bacterial infection eventually made its way to my central nervous system and began causing disabling cognitive and physical symptoms.
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, and could not believe I still tested positive for Borrelia burgdorferi, Borrelia recurrentis, and Ehrlichia chaffeensis.
My life has been completely altered by this illness, and I have been unable to work full-time for six years. 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 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 the TBDWG to take action now on curbing new cases and geographic spread, educate medical professionals and the public, and 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
Lyme disease survivor and patient advocate
Dorothy Leland
I wrote the following Touched by Lyme blog post last spring. It was published on the website of LymeDisease.org on May 24, 2021.
Touched by Lyme: CDC serves up same old wrongheaded Lyme advice
On the face of it, the CDC-sponsored webinar—Lyme Disease Updates and New Educational Tools for Clinicians—seemed like a good idea. I mean, don’t we want doctors to have the latest information about Lyme and other tick-borne infections?
Alas, the word “updates” in the title is a complete misuse of that term. A more accurate description would be “regurgitating obsolete, harmful ways to deny appropriate diagnosis and treatment to Lyme patients while ignoring pertinent recent research.”
I recently watched the hour-long presentation with increasing dismay as the CDC’s earnest-sounding presenter, [redacted], meticulously emphasized such points as:
- A tick must be attached 24-36 hours before it can transmit Lyme. (Fact: Research has shown there's no grace period for tick bites.) See: https://www.lymedisease.org/lyme-sci-tick-attachment-time/
- In the US, almost all cases of Lyme occur in 15 states and the District of Columbia. (Fact: Lyme has been found in all 50 states.) See: https://www.lymedisease.org/lymesci-lyme-all-states/
After a tick bite, a single dose of doxycycline can prevent Lyme disease from developing (Fact: A single dose of doxy after a tick bite has only been shown to prevent rash—not Lyme disease) See: https://www.lymedisease.org/single-dose-doxy-tick-bite-prevents-rash-not-lyme-disease/
“Pretest probability”
[redacted] spent a lot of time telling doctors that they should not even test for Lyme disease if the “pretest probability” is low. Like if you are not in one of those previously referenced 15 states or the District of Columbia. Thus, people in low-incidence states should NOT be tested for Lyme disease—period.
[redacted] mentions that pregnant woman can be treated for Lyme disease. But she fails to point out that the infection can pass from mother to unborn child. After long denying such a possibility, the CDC recently acknowledged that maternal-fetal transmission can, in fact, occur. But you wouldn’t know it from this “update.” (See: CDC allows possibility of mother-fetus Lyme transmission. https://www.lymedisease.org/single-dose-doxy-tick-bite-prevents-rash-not-lyme-disease/ )
Non-recommended treatments
Yet she spends a fair amount of time on a different question. What should a doctor do if a patient shows up in their office after being diagnosed with Lyme elsewhere and have received “non-recommended treatment” for it? (According to her presentation, this means anything beyond one or two short courses of antibiotics.)
Her advice: Listen to them. review their medical history, and then “consider alternate diagnoses.” In this scenario, [redacted] said, “the goal is to demonstrate empathy and compassion.” (I interpret this to mean: be nice, act like you care, and then pleasantly explain that they probably don’t even have Lyme disease—but even if they do, they should stop “non-recommended treatment” immediately.) She mentions the importance of the doctor discussing the risks of treatment. But what about the risks of NOT treating?
In a nutshell, this presentation was filled with tired, worn out, ERRONEOUS information—the kind the Lyme community has been fighting to change for decades.
What about the TBD Working Group?
This is particularly discouraging in light of the 2020 Report to Congress from the Tick-Borne Disease Working Group. The report recognized the critical importance of having patient feedback regarding about such webinars as these.
Recommendation 7.2: Fund and support a directive for CDC (or other appropriate HHS OPDIV or agency) to develop (either directly or through an approved federal contract) a multi-leveled and nationwide curriculum on Lyme disease for clinicians-in-training as well as continuing medical education modules to increase the pool of qualified and practicing clinicians. Provide funding for the U.S. military to participate in this nationwide training and education on Lyme disease and other tick-borne diseases and conditions. This curriculum should be introduced and encouraged at the State level. The final curriculum shall incorporate feedback from patients, clinicians, and research scientists with expertise/experiences on the full spectrum of Lyme disease and other tick-borne diseases/conditions.
How long must we wait for HHS to honor the recommendations of the TBD Working Group? There’s absolutely no way this “Updates” webinar had even a scintilla of input from the Lyme community.
My overall impression of the presentation is that it’s trying to solve the wrong problem. It seems geared towards minimizing the number of people that get diagnosed for Lyme disease in the early stage—when treatment has its best chance of success. If doctors follow the advice in this webinar, more cases of acute Lyme will turn into chronic cases—the exact opposite of what we should all be working towards.
Touched by Lyme is written by Dorothy Kupcha Leland, LymeDisease.org’s Vice-president and Director of Communications. She is co-author of When Your Child Has Lyme Disease: A Parent’s Survival Guide. [redacted].
Andrea Jackson
TBDWG:
I have suffered from the impact of Lyme Disease for 12 years and have had to consult with over 30 doctors. It took 8 years to get an accurate Lyme test and a diagnosis due to the CDC’s don’t test/bad test agenda. I had multiple CDC Lyme tests, but given the test’s 71% false negatives (Bay Area Lyme, 2020- I’d say that’s at least 71% and worse if not tested early) and that I had not tested soon after acquiring Lyme, the CDC test was useless- but of course, given the CDC, IDSA, and ALDF’s decades of misinformation, I and my doctors did not know about the 7.1 of every 10 people being told they don’t have Lyme Disease when they do. I will not spend my or your time describing the suffering I have experienced or all that Lyme Disease has cost me, because …… I think you have certainly heard enough of our stories that, if they were able to, they would have already motivated you to act – act based on what is right and true rather than what is profitable for big Pharma and what is politically advantageous.
The Lyme community is very disappointed that so far, the TBDWG has been manipulated and controlled to 1. continue the manipulation of Lyme medicine for profit and politics and 2. keep hidden the corruptions of the past.
As you have already been told by many throughout the last 4 decades, certain since the creation of the TBDWG in 2016, patients need:
- accurate testing,
- successful treatment options,
- treatment paid by health insurance and medicare/Medicaid,
- knowledgeable doctors that aren’t practicing while in fear of losing their license merely for treating Lyme as they have found is most successful and while unable to work within health insurance networks,
- the acknowledgment that Lyme often causes serious illness and disability and is not rare and not easy to cure- but is often misdiagnosed,
- the acknowledgement that Lyme treatment research needs to be funded (and funding MUST not go to the same researchers the federal government has funded for decades in exchange for their publishing misinformation and false conclusions),
- the acknowledgement and publication by the entire TBDWG that Lyme Disease is devastatingly disabling,
- doctors to be re-educated about Lyme and its longterm disabling impacts, and
- the TBDWG to not rewrite or eliminate valid and needed subcommittee recommendations based on politics and big Pharma allegiance.
In 2020, the CDC representative on the TBDWG said that the CDC agenda is to remain focused on acute Lyme, because “there are more of them and they matter more.” Since the CDC has ensured millions were not diagnosed when they were acute Lyme cases and the CDC has finally admitted that instead of the CDC’s measly 30,000 estimated new Lyme cases per year there are (and have been for decades) likely close to a ½ million new Lyme cases per year, and if not diagnosed and treated, acute Lyme results in long-term disabling illness, how is it that the CDC has not caused millions to suffer and those millions don’t now matter? As the country and the world have been learning exactly how the U.S. federal health agencies operate, for the benefit of big Pharma, it is in the federal representatives interest to finally listen to the wants and needs of Lyme patients, because as the rest of the world has grown aware the last 18 months, of how the government-medical complex actually works, Lyme patients have gained an audience receptive to learning just how your agencies have not just failed Lyme patients and the world’s populations but ensured a great amount of illness and suffering. Below are descriptions of what Lyme patients have watched most of the federal TBDWG member’s do or allow in the past, and suggest they stop doing or allowing these.
The TBDWG Lacks Transparency
Pat Smith spoke about the lack of required transparency during the TBDWG’s creation of the 2020 Report to Congress. Patients encourage her to report the transgressions/offenses.
Also, the 21st Century Cures Act requirements stipulate that the TBDWG “committee minutes, reports, expenses, and related documents be stored in a searchable database (available to the public)”- Where is this searchable database? Patients want to see the financial disclosures of the IDSA/bigPharma puppets the TBDWG federal members and HHS leadership put onto the TBDWG in public voting roles (to control the TBDWG vote.)
The TBDWG Core Values are a Farce.
Lyme patients have watched most the federal TBDWG members, with the backing of the IDSA members placed in public voting roles (done so to enable the federal TBDWG members to control the TBDWG vote) repeatedly/continually act in ways contrary to the TBDWG Core Values.
Core Values not adhered to by most of the TBDWG federal members (plus the public members placed on the TBDWG to control the group’s votes) include the following:
- Respect (everyone is valued),
- Innovation (shifting the paradigm, finding a better way),
- Honesty and Integrity (find the truth, tell the truth), excellence (quality real-world evidence underlies decision making), being human-centered & valuing doctor-patient experience, having the highest ethical standards, valuing everyones’ experience,
- Compassion (relieve suffering of others, pursue the greatest good)
- Collaboration (won’t be created behind closed doors, listen to patient experience, objective truth, maximum public health impact)
- Accountability (buck stops here, at this table)
- Pledge to be transparent
The TBDWG, just like the CDC and HHS, does not have patient support or confidence. We do not trust the TBDWG (due to the federal membership (most of them) and the placement of IDSA members into public voting roles that are known to publish misinformation for decades and worked against the interest of patients and their doctors.
Don’t test-Bad Test Agenda, 71% false negatives ignored, public comments ignored & left out
In 2020, the CDC TBDWG representative announced the CDC agenda is to remain focused on only acute Lyme. At the same time, the CDC said that the CDC’s Lyme test works because “it tells us what we expect to hear.” Do what? Is that science? Is it good science? The 2020 TBDWG completely ignored the 2020 Bay Area Lyme study that showed, as Lyme patients have known for decades, that the CDC’s Lyme test How is it that the CDC thinks that the CDC Lyme test works because it tells them what they “expect” when what they can say they expect is based on decades of the CDC telling doctors not to test except in NE states and if testing, the doctors are required to use the CDC 71% false negatives test? results in at least 71% false negatives. (We expect that there are many more false negatives if patients are not tested early- since Lyme Disease often greatly impacts the immune system and the test is a test of antibody presence.) What the CDC “expects” the test to tell them is based on decades of a don’t test/bad test agenda. 2020 Public comments repeatedly pointed this out, but not a word was spoken about it in the TBDWG meetings or the 2020 report. How is ignoring the results of this very important Bay Area Lyme study and ignoring the bad logic of the CDC representative meeting your core values of innovation, honesty and integrity, compassion, collaboration (seeking objective truth), accountability, and transparency? How did this very important fact, that the CDC Lyme test does not and has not, for decades, worked to identify Lyme in patients, not get spoken or written about in the 2020 TBDWG meetings or report? How did it not get discussed in the report’s public comment section when it was without a doubt written about in public comments many times?
Federal TBDWG Representatives & HHS repeatedly manipulates TBDWG voting membership
Public comments ignored and left out of the 2020 TBDWG public comments section include many that ask how and why the public voting members named to the TBDWG are chosen despite patient outcry against named members? The latest such member named to the committee was Shapiro, before him we had Bob Smith and Wormser. Both Shapiro and Wormser received a well known 2007 email from the ALDF that called for a “socio-political assault” on Lyme patients and their doctors because the science was not on their “anti-longterm Lyme impact”-side (but so were 2 still working for the CDC). The TBDWG feds and HHS are able to lamely justify their loading the deck (the TBDWG vote) against patients and in favor of corruption because the TBDWG panel is suppose to be “balanced.” The inclusion of one IDSA or other of the known for corrupting Lyme medicine does the opposite of “balancing” the TBDWG as it stacks the deck to the “feds plus one”. Federal representatives in powerful positions within our health organizations and IDSA-leadership have been involved in the corruption of Lyme medicine for decades, how is their joining forces and controlling the TBDWG vote balanced? Shapiro’s vote greatly manipulated the content of the 2020 TBDWG report and enabled the federal TBDWG representatives to manipulate the 2020 report. There was a petition of 38,000 patients asking Shapiro not be named as a voting TBDWG member and yet he was. His reputation as someone that has worked against the interest of patients for decades should have been enough to keep him from being named to the working group. His financial disclosure was truthful and considered, it should have kept him from being named to the working group. If those were not enough of a reason, surely his being named in the Torrey Lyme lawsuit and being one of the recipients of the ALDF’s 2007 emailed-call for a socio-political assault on Lyme patients should have been. Why are the summations of public comments so careful to not divulge the true content of the public comments? Why are the public comments always white-washed in the report summaries? Why are good advocates, doctors, researchers, and Lyme patients now unwilling to serve on the TBDWG as public voting members? It is because those who want to better Lyme medicine and disclose the truth about Lyme Disease and how it has been manipulated and corrupted for profit and politics are unwilling to be used by the federal government in an attempt to make the TBDWG appear legitimate?
Ignoring, white-washing, and leaving Public Comments/Patient Experience out of Discussions & TBDWG Reports
Patients want, and ethics demand an investigation into the manipulation and corruption of Lyme medicine. Lyme medicine will never evolve until past and present corruptions and manipulations are exposed and disclosed. Recently the CDC has updated their estimated annual Lyme disease cases from 30,000 to almost a ½ million. Is it a coincidence that vaccine manufacturers are at the same time researching and working on a new Lyme vaccine or vaccines? The CDC has admitted that they’ve told doctors for decades not to test for Lyme unless patients live in the NE USA and the CDC requires and has required that the doctors use the CDC’s 71% false negatives test. Why cover up that the CDC Lyme test does not work and hasn’t worked for decades? No matter how federal TBDWG want to discuss testing terminology, simply put- the CDC Lyme test does not work- it does not determine that Lyme is present in patients that have active Lyme. Is this devotion to hiding how very poorly the CDC Lyme test is due to the need to keep past deeds covered up or is that and because a new Lyme vaccine can’t be marketed to people who already have the illness? Lyme disease was known to result in serious longterm effects and testing false negatives were known to occur prior to the early 1990s. Those two truths were known up until the American Lyme Disease Foundation came onto the Lyme scene in the early 1990s. Is it a coincidence that Lyme medicine was reversed just as the Lyme vaccine makers established the American Lyme Disease Foundation? Patients want it disclosed how Lyme Disease medicine has been corrupted and manipulated to cover up past deeds and continue to ensure profits for Big Pharma and Health insurers. Public comments about the Torrey Lawsuit wherein all the health insurers, charged with colluding with the CDC & IDSA to make Lyme testing fail and patients unable to get treatment, were ignored and left out of the 2020 report. Patients demand the TBDWG quit ignoring their call for an investigation and demand the TBDWG quit leaving out public comments that call for an investigation.
TBDWG Members argue over Lyme persistence to withhold funds for research into treatment
How will Lyme medicine and patients’ health ever improve when CDC has an admitted acute-Lyme-only agenda (CDC Representative in TBDWG March, 2020 Meeting) and attests to CDC’s confidence in CDC’s very failed testing, while at the same time, controlling members of the TBDWG fight to continue the old argument that no research and thus, improvements in Lyme treatment, can be made until the question of Lyme persistence is answered. The big Pharma-Federal Government collusion in control of medical research has had a ½ century to answer the supposed question over Lyme persistence. VisAVisSymposiums.org has recently published a list of 700 peer reviewed scientific articles that document Lyme persistence. How many peer reviewed scientific articles documenting Lyme Disease persistence do the federal health department representatives, ALDF, and IDSA need before they quit arguing over persistence and quit using that argument to withhold funding for treatment development? If the federal government and corrupt IDSA and ALDF refuse to admit or disclose that the CDC’s Lyme Disease test tells 7.1 of every 10 with Lyme Disease that they do not have Lyme and fails to identify persisting cases, how will persistence ever be proven? Why is it that arguing over the persistence of Lyme is allowed to divert from the obvious facts that 1. Lyme has been shown to persist (we have over 700 peer reviewed articles documenting it and it has been found in the organs of people who have died after years and decades of Lyme treatment) and 2. Research into what is wrong with people who have persistent illness and how they can be made better can be done without the few corrupt holdouts agreeing that Lyme spirochetes are active in those people. Is the obsession with withholding funding for treatment due to the big Pharma desire to make profits from Lyme vaccines? Vaccines are not needed for illnesses for which successful treatments exist. Is that why those in power and controlling the TBDWG want to continue to argue over persistence instead of recommend funding for Lyme treatment research?
Plea to TBDWG Members
If you are a TBDWG member reading these comments, and you are not completely controlled by big Pharma or by politics controlled by big Pharma, please wake up or grow a conscience– who are you serving? The world is becoming very aware of how medicine and “health” politics work. The truth of Lyme medicine’s manipulation and corruption is going to come out – decades of suffering has not been due to just ignorance or bureaucracy. Lyme testing does not work and that has ensured millions have suffered for years or decades- that isn’t something those in power have not known. Patients are ignored and treated badly because of the CDC, ALDF, and IDSA’s anti-longterm Lyme impact propaganda, which is false. Health insurers don’t have to pay claims and people can’t find doctors who know Lyme Disease and how to treat it. These have not been accidentally brought into being. These are not unfortunately consequences of medicine that just had not yet evolved- Lyme medicine was reversed in the early 1990s. Lyme testing was known to result in many false negatives. Lyme Disease was known to have significant and disabling impacts. Please begin to do the right thing, start voting in favor of change and the disclosure of past deeds. Change will not happen without disclosure. You will not be able to do what you hopefully had hoped to do when you chose a career in healthcare and/or medicine. Choose a better side, not that of those responsible for a ½ century of Lyme medicine’s manipulation and the suffering of millions. Choose patients and truth.
Andrea Jackson
Mary Livesay
I have lived with the alpha gal allergy for 14 years now. I altered my diet as necessary and live quite well avoiding mammal products. My question involves an inflammatory reaction post total knee replacement. I have had excessive and prolonged inflammation, and I am eight months post surgery. My physical therapist has another knee replacement patient who suffers Lyme disease and has had the same unusual experience. Being athletic, we both started out ahead of schedule in the rehab process, but our bodies seemed to sense there had been extreme trauma to the knee and tightened up excessively on that side of our bodies. Have you seen and is there a correlation between the inflammatory reactions to insect infection and surgical trauma inflammation?
Thank you very much for addressing my questions.
Mary Livesay
Lonnie Marcum
I would like to see the current TBDWG address the need for better state and county participation in national tick surveillance programs, as well as the need to design dragging, flagging and tick collection practices suited for all terrains.
Two new studies looking for western blacklegged ticks in California found disease-carrying pests in two surprising locations: coastal regions and on rocks. In both studies, the ratio of infected ticks was equal to those found in dense woodland habitats, where we would expect to find ticks in California.
Both projects point to a need for better understanding, improved surveillance techniques and better public awareness of ticks West Coast ticks.
The following, are excerpts from blogs I wrote for LymeDisease.org under the heading “News & Blogs: LymeSci.” Please visit my blog for more detailed information about the need for better surveillance techniques outside of the Eastern U.S.
“Summer is here! It’s time for picnics, hiking and camping. As the weather warms, ticks will go into hiding. But just because you don’t see ticks doesn’t mean they aren’t there. In fact, the ticks you don’t see are the most dangerous.
A new tick study looks at environmental and behavior patterns of nymphal ticks in the Sierra foothills of California. (Hacker, 2021)
Over a three-year period, researchers collected more than 2,000 ticks from Folsom Lake State Recreation Area. It’s a popular spot for outdoor enthusiasts, about 20 miles northeast of Sacramento.
Rocks, logs and tree trunks
The study team didn’t limit their investigation to leaf litter, where researchers typically look for nymphal ticks. They also searched for ticks on rocks, logs, and tree trunks, in an effort to better understand seasonal and environmental factors affecting ticks.
They collected more nymphal ticks than they had expected. And believe it or not, they found the highest percentage of Lyme-infected ticks on rocks!
Overall, they found the prevalence of Borrelia burgdorferi (the bacteria that causes Lyme disease) in Ixodes pacificus (western blacklegged tick) nymphs was 6.2%. However, this varied greatly by season and year. Seasonally, nymphal tick activity peaked from March through June.
During one year, the average infection rate of nymphal ticks exceeded 11%. Then it dropped to 2% the following year. The highest rate of infected ticks occurred after the rainy season and in areas shaded by trees.
The lowest rate of infected ticks occurred after periods of prolonged drought, higher temperatures (above 21-23є C, 70-73є F.), and lower humidity (below 83–85%.)
Blacklegged ticks (Ixodes scapularis, Ixodes pacificus) transmit Borrelia burgdorferi, the bacteria that causes Lyme disease. They have four lifecycle stages—egg, larva, nymph and adult—the last three being able to bite and transmit disease to humans.
As it turns out, the standard dragging techniques are not necessarily the best method for finding nymphs outside of the northeastern US. (Tietjen, 2020). As a result, nymphal ticks have gone largely undetected in many regions of the country. This includes many parts of California that have rarely, if ever, been sampled.
West coast Lyme puzzle
In California, nymphal ticks have a higher Lyme-infection rate than adult ticks. This is the opposite of the East coast, where the greatest risk of infection comes from mature ticks.
Ticks are not born with the bacteria that causes Lyme disease—they acquire it by feeding on an infected animal, known as a host. In the eastern US, the primary reservoir host for Lyme disease is the white-footed mouse.
In the western US, the primary reservoir host for Lyme disease is the Western gray squirrel. Immature ticks typically acquire the pathogen when they feed on an infected squirrel. When the infected tick matures and then feeds again, it can pass the bacteria on to the next animal or human.
There is another unique feature to the Lyme disease puzzle on the West coast, the Western fence lizard.
In 1998, a groundbreaking study by UC Berkeley entomologist Robert Lane brought this issue to light. He found that if an infected Western blacklegged tick feeds on a Western fence lizard, a protein in the blood of the lizard neutralizes the Borrelia bacteria in the gut of the tick. (Lane, 1998)
This results in a unique phenomenon where nymphal ticks have a higher infection rate than adult ticks. This is important, as up to 90% of the juvenile Western blacklegged ticks will feed on the Western fence lizard.
As previous studies have shown, northern California has the highest rate of Lyme disease in the state. In Mendocino and Humboldt counties, for instance, the nymphal tick infection rate can be as high as 40%.
(Tдlleklint-Eisen,1999)
Meanwhile, a more recent study found tick infection rates of up to 31% in some parts of the San Francisco Bay Area. (Salkeld, 2021)
“Average” is misleading
This study highlights the great diversity of tick abundance in California. When you average tick infection rates across the whole state, you get an average infection rate of 1%. But that gives a misleading picture.
It’s important to recognize that the risk for tick-borne disease is not uniform throughout the state (or even within a county), and that nearly invisible nymphal ticks are the primary culprit for Lyme disease.
These tiny nymphal ticks are as small as poppy seeds. Imagine going for a hike and trying to spot a poppy seed before sitting on a rock or log.
So this summer, as you plan your outdoor activities, be sure to include tick protection in your to-go bag. Oh, and watch where you sit!
LymeSci is written by Lonnie Marcum, a Licensed Physical Therapist [redacted]. In 2019-2020, she served on a subcommittee of the federal Tick-Borne Disease Working Group. [redacted]
References
Hacker G.M., Jackson B.T., Niemela M., Andrews E.S., Danforth M.E., Pakingan M.J., Novak M.G. (2021) A Comparison of Questing Substrates and Environmental Factors That Influence Nymphal Ixodes pacificus (Acari: Ixodidae) Abundance and Seasonality in the Sierra Nevada Foothills of California. J Med Entomol. Apr 16:tjab037. doi: 10.1093/jme/tjab037. Epub ahead of print. PMID: 33860326.
Lane, R., & Quistad, G. (1998). Borreliacidal Factor in the Blood of the Western Fence Lizard (Sceloporus occidentalis). The Journal of Parasitology, 84(1), 29-34. doi:10.2307/3284524
Lane, R. S., J. Mun, M. A. Peribбсez, and H. A. Stubbs. (2007) Host-seeking behavior of Ixodes pacificus (Acari: Ixodidae) nymphs in relation to environmental parameters in dense-woodland and woodland-grass habitats. J. Vector Ecol. 32: 342–357.
Rose, I., Yoshimizu, M. H., Bonilla, D. L., Fedorova, N., Lane, R. S., & Padgett, K. A. (2019). Phylogeography of Borrelia spirochetes in Ixodes pacificus and Ixodes spinipalpis ticks highlights differential acarological risk of tick-borne disease transmission in northern versus southern California. PloS one, 14(4), e0214726. https://doi.org/10.1371/journal.pone.0214726
Salkeld D.J., Lagana D.M., Wachara J., Porter W.T., Nieto N.C. (2021) Examining prevalence and diversity of tick-borne pathogens in questing Ixodes pacificus ticks in California. Appl Environ Microbiol. Apr23:00319-21. doi: 10.1128/AEM.00319-21.
Tдlleklint-Eisen L, Lane RS. (1999) Variation in the density of questing Ixodes pacificus (Acari:Ixodidae) nymphs infected with Borrelia burgdorferi at different spatial scales in California. J Parasitol. Oct:85(5):824-31. PMID: 10577716.
Tietjen, M., Esteve-Gasent, M. D., Li, A. Y., & Medina, R. F. (2020).
A comparative evaluation of northern and southern Ixodes scapularis questing height and hiding behaviour in the USA. Parasitology, 147(13), 1569–1576. https://doi.org/10.1017/S003118202000147X
Kathleen Wallace
I am from Upstate New York. I became a Lyme Disease patient advocate after dealing with life changing consequences of exposure to Lyme. With my diagnosis of Lyme came Multiple Chemical Sensitivities (MCS). The life changing syndrome lead to isolation and despair; a loss of quality of life.
I want to share with you, because we are still discovering surprising groups of sufferers of MCS; some with no obvious connections to ticks.
My passion to make a difference has grown through my journey. I was a successful business owner and manager for a national company whose name you would recognize. I lost my home, my business and my family life because of MCS.
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
With MCS, we lose the ability to use public transportation, public housing and hotels. We are unable to participate in many community activities. The social impact is gruesome.
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, irregular heartbeat, and seizures.*#2
With MCS the quality of life is significantly degraded. Access to healthcare can be difficult as we have to tolerate hospital and office air.
The current COVID19 pandemic brings this concern into even sharper focus; sanitation requirements for the virus are not tolerable for people with Multiple Chemical Sensitivities. The sheltering in place that more of our neighbors are experiencing and the isolation- is nothing new to folks with this medical condition.
I am a member of a multitude of online support groups for MCS and Lyme Disease, it is quite clear that MCS is an underlying condition in the tick- borne disease community.
We share the symptom of MCS with Gulf War veterans and 9/11 survivors. We overlap.
The research advisory committee on Gulf War Veteran's Illness found similarities between Gulf War illness and multi symptom conditions in the general population. The committee focused on three defined syndromes; Chronic Fatigue Syndrome(CFS), Fibromyalgia (FM), and Multiple Chemical Sensitivities (MCS). *#3 (PG.274)
It's not just Gulf War vets who deal with MCS. In 2002, a US Senate Subcommittee held hearings on finding a link between World Trade Center air quality and development of MCS. *#4
The time has come to recognize MCS. We need a medical code. We need research. We need education for physicians. We need better air quality control.
I offer my expertise and knowledge of living with Multiple Chemical Sensitivities as we make a difference together. Thank you kindly for the privilege of sharing. I am here to serve.
Sincerely,
Kathleen Wallace
Upstate New York Lyme Disease Association
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
3. Research Advisory Committee on Gulf War Veterans' Illness. Gulf War Illness and the Health of Gulf War Veterans: scientific findings and recommendations Washington D.C. November 2008. website:www.va.gov/Rac-GWVI.
4. Senate subcommittee chaired by Senators Joe Lieberman and Hillary Clinton on Clean Air, Wetlands, and Climate Change hearing. Impacts on Air Quality of the September 11th Attacks and Possible Health Effects in the Area of the World Trade Center. February 11,2002. Dr. Steven Levin of the Mount Sinai School of Medicine. Alison Johnson, chair of the Chemical Sensitivity Foundation, testimony at the World Trade Center air quality hearing held in lower Manhattan by U.S. EPA Ombudsman Robert Martin on February 23,2002.
Footnotes:
Among generally representative groups of Gulf War Veterans, 13-17% endorse the symptom of being sensitive to chemicals or odors.*#3(pg.280)
Results from studies of Gulf War Veterans show the health outcome of MCS on multiple listings and findings.*#3(pgs. 401,403,408,412,415,419,424,429)
Alicia White
To Whom It May Concern:
I am the founder of The Tick Chicks, the host of Lyme Time (podcast) and post daily on social media about the fast-growing epidemic of Lyme disease and co-infections. In case you don’t know about co-infections, some of them are proving to be even worse than Lyme itself.
My 5,000+ followers and subscribers want things done. People are in pain. They are misdiagnosed with MS, Parkinson’s, Alzheimer’s and ALS to name a few and waste years of their lives undiagnosed.
What needs to be done?
*Baseline testing by neurologists with a reputable and current lab [redacted] that specialize in tick-borne illness. Neurologists will be testing for the above diseases anyway, so Lyme should be at the top of the list of the “Terrible 7”.
*Insurance needs to cover the above tests.
*Funding for research and awareness. This includes doctors and ongoing educational requirements. They are severley uninformed with outdated information.
With 500,000 new cases each year, it’s imperative Lyme disease gets the attention that it deserves.
Thank you,
Ali White
The Tick Chicks, LLC
