This webpage displays the written comments received by the Tick-Borne Disease Working Group for the December 2020 meeting. The opinions expressed in each comment displayed on this webpage belong solely to the author of the comment and do not necessarily reflect the opinions of the Department of Health and Human Services (HHS) or the Tick-Borne Disease Working Group. Any information provided in the comments displayed on this page has not been verified by HHS.
Bambi L Albert
I was first infected in 1999 at the age of 41. Was treated for ringworm. 4 new infections in 2005. A whole bunch of coinfections. I'd be glad to send in my medical records. It's time you all STOP protecting the bad guys and do your jobs as professionals. Frankly I'm getting tired of the backstabbing.
I am now 62 years old, 21 years I've watch you deny me.
I will take the abuse no more!
Bambi L Albert
Anonymous 1
Hello my name is [redacted] I have neurological Lyme disease and I would absolutely love to share my story it's a hard one to share bc my life was robbed when I was diagnosed. My mom came across this and forwarded this email to me today but I see that it is too late to submit your comment. Is there another way I can submit a comment so my story can be heard. Or anything else I can do. ?! I'm just dying for people to hear all of our stories so changes can be made and everyone can get the help they so desperately deserve. this is something that weighs heavy on my heart and I'm always saying to my mom , "I wish I was important enough where what I say can be heard and the government would take the appropriate steps to make the changes needed so everyone is helped.but I'm not a celebrity I'm just your everyday person" I'm not sure if you have any recommendations for me so we can become more involved in this fight for change but I would really like to get involved. My husband and I both have Lyme disease and tularemia and multiple co-infections which they think was passed onto one another. and we would like to help.
Thank you
Anonymous
Freehold, NJ
Trisha Greenlaw
For years I have suffered from Chronic Lyme Disease. I have been sick both physically and emotionally due to Lyme Disease which went undiagnosed for years. I was finally diagnosed in 2013.
It all started in my younger years. It started in my gut and moved from system to system and before I knew it I found myself on my living room floor in fetal position knowing something was killing me but no answers of what the cause was or how to help myself.
I went from doctor to doctor trying to find out what was causing me to be so sick. In 2009 my primary care tested me for Lyme Disease. It came back negative but that was one of the first things my doctor at the time thought was wrong with me. Once it came back negative regardless of my symptoms he scratched it off of his list as being the culprit for my medical issues.
I kept getting referred out to specialist after specialist for different systemic issues. I was being diagnosed me with so many different things. Chronic Fatigue, Fibromyalgia, IBS, Gerd, Anxiety, Globus Sensations etc. It got to the point where I felt so frustrated and felt as though doctors were essentially insinuating that I was making my symptoms up or my symptoms were caused by anxiety and that I was crazy. I was left to be sick, feel alone, and was losing hope.
It got to the point where I almost fully accepted that no one was going to be able to help me and whatever was causing my illness was going to take my life. I wrote my children goodbye letters. I thought whatever this was was going to take my life before anyone would properly diagnose it. I was losing hope, losing faith, losing my ability to function. I had so many debilitating symptoms from sever body aches, fatigue, deep bone pain, muscle twitching, throbbing everywhere, dizziness, bowel issues, eye sensitivity, memory loss, lack of concentration, nausea, numbness, tingling and burning in my limbs, anxiety, numbness in my fingers and toes, ringing in ears, ocular migraines, the list goes on and on.
Life was a living hell! Every day for years! My husband came home one day to find me curled up in the fetal position on our living room floor sobbing from all of the pain I was in. I told him I was going to die if no one could figure out what was wrong with me. I was slowly fading and it was very scary to have no answers. That was when I really hit the research hard, I was determined to find out what was ailing me.
After many days and hours of research I found an article about Lyme disease. After reading more about Lyme disease and the inaccuracy of the testing results due to how the testing was performed and the criteria for a positive result. I was nearly certain that this was what had been plaguing me. I found a respected Doctor of Osteopath/ Naturopath and made an appointment to be seen. They drew a bunch of blood work and tested me for Lyme Disease and other tick borne diseases through [redacted]. When I received my result I had many of bands and the doctor told me from what he was seeing I have had this for many of years. He informed me that they would do the best that they could to rid of most of my symptoms but from what he was seeing I had had Lyme Disease for too long for it not to end up having long term effects.
Neurologically it had already affected me. I saw a Neurologist to access me. They informed me the only way to really help my neurological issues would be to give me antibiotics through a port that would go into my chest. Without having the financial means for the medical care that those services would entail and for health care to not cover those costs that wasn't an option for me. That would require an at home nurse as well and that was not in my financial realm by any means.
I was started on oral antibiotics along with many of supplements to help boost my immune system and help heal me and fight the bacteria. I ended up in the ER with severe stomach pain from all of the medicine I was taking and had to take a break from them although they were definitely helping with symptoms.
Upon healing my gut a bit I then tried going on an herbal protocol which helped ease some symptoms. Many of years later and multiple attempts at ridding of this disease and thousands of dollars later, I sadly do still have side effects and symptoms from it unfortunately. Doctors say there is no such thing as chronic lyme disease, they ignore my symptoms as being due to "anxiety" quite often and They are more mild thankfully as I am able to function and live a somewhat normal life but I certainly still deal with brain fog, memory issues, trouble with focus and concentration, word searching, ringing in ears, neurological side effects such as numbness in fingers and toes and vertigo, sensitivity of eyes, fatigue, anxiety etc. but it is lesser of an extent to what It used to be. I am not who I use to be as this has greatly altered my IQ and my ability to communicate in the same form that I use to due to lack of memory and vocabulary etc.
V/R,
Trisha Greenlaw
David Lee Hoffman
As someone who has been suffering with Lyme for over 15 years, I find it outrageously insulting to have someone like Shapiro ostensibly representing me. The growing community of those dealing with life-changing debilitating symptoms needs help, hope, and hear recognition of its existence. We shouldn't have to go into debt, sell our homes, our possessions, to pay for medical treatment. Our insurance and medical plans need to step up to the plate and do their part. We're all so desperate for some good news...
Sincerely,
David
Lagunitas, CA
Dorothy Leland
Touched by Lyme: Contentious TBDWG vote delivers a win for patients
The current session of the federal Tick-Borne Disease Working Group is drawing to a close. This panel has been meeting since June 2019 and its 2020 Report to Congress is due in December.
On November 17, it held what may have been its most significant meeting to date. This was as much for what it told us about the people on the panel and the entities they represent–as well as the public vote that was taken.
The most important and by far the most contentious item on the agenda was Chapter 7 of the upcoming Report to Congress.
This chapter encompasses many of the themes that the patient community cares most deeply about:
- The barriers Lyme patients face getting the medical care they need
- The lack of insurance coverage for long-term Lyme treatment
- The stigma that patients face
- Diagnostic errors that prevent patients from receiving the diagnosis and treatment they need to get well
- The fact that the science in Lyme disease is unsettled
- That divergent views about treating chronic Lyme disease exist
- That shared medical decision-making should be used. (The concept that doctors and patients should discuss all treatment options and jointly decide how to proceed is generally encouraged in the medical arena. Except for Lyme disease, when instead everyone is supposed to just blindly follow the IDSA guidelines.)
Indeed, the drive to address these problems was why Lyme advocates fought so hard for the formation of the Working Group in the first place. The idea was to bring divergent voices to the table—including those of chronic Lyme patients—to jointly hammer out ways to help members of a marginalized community obtain the care they need and deserve.
And it is precisely those patient concerns that certain members of the Working Group (and the agencies or organizations they represent) cannot stomach, which has been evident from the start.
[redacted]
You can access the rest of Dorothy Leland's blog post at https://www.lymedisease.org/news-blogs/touched-by-lyme/
Kara Bennett
As a psychologist and person with Lyme disease who meets the IDSA and CDC guidelines for diagnosis but did not fully recover with short term treatment of antibiotics, I want to offer the following comments regarding the controversy surrounding chronic Lyme disease.
Background Information
I was fortunate to have worked and studied with Dr. Howard Barrows, the neurologist who originated the use of Problem-based Learning (PBL) for medical education in the 1970s. Now in my 70s, I have spent many years using the PBL methods for medical and mental health education. This type of education includes using simulated patients so that the physician can "Talk aloud" while in the process of diagnosing the patient. Then a transcript of the physician's statements and exams is analyzed to describe their problem-solving strategies. This offers a chance to learn about their diagnostic problem-solving methods in addition to the required medical information. Barrows, H., & Bennett, K. (1972). The diagnostic (problem-solving) skill of the neurologist:experimental studies and implications for neurology training. Archives of Neurology. 26,273-277. http://archneur.jamanetwork.com/article.aspx?articleid=571194
When I first became ill in 1985, I was a postdoctoral scholar continuing the research from my dissertation entitled: A construction of a diagnosis: a study of physician's mental strategies for fitting a patient's symptoms and signs to a disease category, (1981) Doctoral Dissertation, U.C.L.A. https://search.proquest.com/docview/303106298/abstract
Five years later after seeing many doctors, I was diagnosed with Lyme disease. During this time I was aware of the methods the doctors used for their diagnoses that might influence the accuracy of their diagnosis. For example, my symptoms were often complex, unusual, and would subside, and then return. When I saw physicians who did not spend time exploring the complexity of the symptoms, nor the non-linearity of their occurrence, they did not suggest Lyme disease. The doctor who did finally suggest Lyme disease spent an hour for the first appointment and was interested in learning about the patterns of my symptoms over a period of time.
This diagnostic experience resulted in my doing research and publishing an article that suggested physicians who did not take the time to learn about the nonlinear and complex symptom patterns a person with Lyme disease may present, could more easily misdiagnose this illness.Bennett, K. (2000). Perceptions of Lyme Borreliosis. Journal of Spirochetal and Tick-borne Diseases, 7, 42-51 https://www.ilads.org/wp-content/uploads/2018/10/JSTBD-VOL7-FALL-WINTER-00-2.pdf
Recommendations
With 35 years of personal experience with Lyme disease and medical education, I find it incredible that I continue to read the same kind of stories about patients having to go to many doctors and take years to have a diagnosis that fits their symptoms. And then, somehow they are supposed to become well! Until there is long term research to really understand the course of Lyme disease over time, the diagnosis and treatment of this illness remain in need of much better understanding. It is equally important that more physicians learn about nonlinear and complex symptom patterns, for example, by including Problem-based Learning in the education curriculum for Lyme disease.
Kara Bennett, PhD
Los Angeles, CA
Lonnie Marcum
I'd like to thank the Tick-Borne Disease Working Group for your service. Having served on the Tick Biology, Ecology & Control Subcommittee I appreciate how hard each of you has worked over the past two years on the 2020 report to congress. I respectfully submit the following critique of past NIH clinical trials and offer suggestions for the future.
In the 40+ years since Lyme disease was discovered there have been four federally funded randomized placebo-controlled treatment trials of patients with persistent symptoms following standard treatment (Klempner 1&2 2001, Krupp 2003 and Fallon 2008). Despite the fact that two of these trials demonstrated some benefit, the IDSA concluded that there is no benefit to repeated antibiotic therapy. In fact, the Krupp trial clearly demonstrated improvement in fatigue in the patients who received additional antibiotics. Dr. Brian Fallon corroborated this finding in his study, and also reported patients showed improvement in cognitive functioning, physical functioning and pain levels following additional antibiotic treatment.
Following a thorough review of these four trials Dr. Fallon concludes: "Based on the evidence cited above, one cannot conclude that repeated antibiotic therapy is ineffective in improving certain symptoms associated with post-treatment Lyme disease syndrome. Nor can it be concluded that repeated antibiotic therapy is robustly effective. One can conclude however that approximately 60% of patients with persistent post-treatment Lyme fatigue may experience meaningful but partial clinical improvement in fatigue with antibiotic retreatment." (Fallon 2012)
Lyme arthritis is the best understood and most studied manifestation of Lyme disease. Even Dr. Allen Steere, who first described Lyme arthritis in 1979, prescribes longer courses of antibiotics. (Steere 1979) In 2015 Dr. Steere wrote: "In our experience, some patients do require longer courses of antibiotic therapy for effective treatment of Lyme arthritis. Thus, if there is mild residual joint swelling after a 30-day course of oral antibiotics, we repeat the oral antibiotic regimen for another 30 days. However, for patients who continue to have moderate-to-severe joint swelling after a 30-day course of oral antibiotics, we treat with IV ceftriaxone, 2gm/day. Although there is trend toward greater efficacy with 4 weeks compared with 2 weeks of antibiotics, there is also a greater frequency of adverse events." (Arvikar, Steere 2015)
Unfortunately, all four of these trials used the same two antibiotics—doxycycline and IV ceftriaxone. So truthfully, all these trials have shown us one thing—that these antibiotics are not effective in every patients with late stage Lyme.
As the former head of GlaxoSmithKline, Dr. Allen Roses said "The vast majority of drugs—more than 90%—only work in 30 or 50% of the people. Drugs out there on the market work, but they don't work in everybody." (Connor 2003)
We've learned from Dr. Ying Zhang's research at Johns Hopkins University that there are multiple other off-label drugs and drug combinations that kill borrelia better than doxycycline in the laboratory. (Feng 2016)
Why is it in the past 10 years the NIH has not looked at alternative treatments for the subset of patients with chronic symptoms post-treatment for Lyme disease?
We are less than a year into the COVID-19 pandemic leaving many patients with persisting symptoms of the virus. Science has not abandoned these "long-haulers," as they are being called. Why has the IDSA abandoned patients with Lyme who are left with chronic symptoms following standard treatment? Within weeks of the CDC announcing the COVID-19 epidemic, the FDA and NIH authorized hundreds of clinical trials using off-label drugs. Some of those drugs have shown promise, some have not. And the search continues today.
Why in 40+ years have we not been able to offer these same resources to patients with Lyme and other tick-borne diseases? And more to my point, why is it that some who sit on this panel, are averse to the idea of helping those who continue to suffer? The entire purpose of the TBDWG was to identify gaps and offer solutions. Not to impede progress.
Lyme arthritis is not the only consequence of late stage Lyme.
Left untreated, Lyme disease can spread to the nervous system leading to neuroborreliosis including: (Logigian 1990)
- meningitis – inflammation of the membranes that cover the brain/spinal cord.
- encephalitis – inflammation inside the brain
- myelopathy – inflammation of the spinal cord
- cranial neuritis – inflammation of the cranial nerves
- neuropathy – inflammation of the peripheral nerves
Bannwarth's syndrome – "terrible triad" of meningitis, cranial neuritis and painful neuropathy
As it turns out, the most frequently reported "worst symptoms" in the MyLymeData patient registry are neurological (84%.) The most frequently reported neurological symptoms being memory loss and cognitive impairment, sleep impairment, psychiatric manifestations, headaches, and neuropathy. (Johnson 2018)
Unfortunately, neurological Lyme disease symptoms are largely invisible and difficult to quantify. Thus, many physicians, like Dr. Eugene Shapiro, write them off as psychosomatic. And because the test for Lyme is prone to false-negatives the IDSA leaves these patients with no treatment options and no hope. Until recently, there hasn't been a good measurement for patients with these long-standing neurological symptoms following treatment for Lyme disease. Two studies published in 2019 by renowned researchers—one from Johns Hopkins University, the other from Harvard—have given us quantifiable, physiological reasons for these debilitating neurological symptoms. (Coughlin 2018, Novak 2019) The Johns Hopkins study revealed chemical changes and widespread inflammation in the brains of patients with persistent symptoms following treatment for Lyme disease. The Harvard study showed nerve damage (small fiber neuropathy) and decreased blood flow in the brains that may also contribute to dysautonomia.
The fundamental goal of healthcare is to restore "health" by treating the underlying disease. We need clinical trials designed to address the needs of patients with neuroborreliosis.
When LymeDisease.org polled over 4,000 patients with Lyme, the number one recommendation was that the NIH should emphasize research for diagnosis and treatment of late and chronic Lyme disease. It should also seek ways to reduce treatment failures for early Lyme disease. (Johnson 2019)
The COVID-19 pandemic has taught us much, including what this country can accomplish in a short period—if there is the political will to do so. Yet, for political reasons, the past 20 years of Lyme research sits in a vacuum.
There are two major hurdles in finding an optimum therapeutic end point in treating Lyme disease. 1) a test that is capable of directly detecting active Borrelia burgdorferi infection, and 2) the ability to understand how the presence of tickborne coinfections (like anaplasma, babesia, ehrlichia, rickettsia and Powassan) may complicate the course of Lyme disease. I would like to see the NIH focus on these hurdles.
My message to those who sit on this panel, wanting to close the door on chronic Lyme, is that in medicine NOTHING is absolute, the science is NEVER settled, and patient care NEEDS to be as individualized as the individual. What works for one may not work for the next. This is why we must listen to our patients. This is why we must continue to conduct research and seek cures.
Sincerely, Lonnie Marcum, PT, BSHCA
Health & Science Writer, LymeDisease.org
Paso Robles, CA
References:
Arvikar, S. L., & Steere, A. C. (2015). Diagnosis and treatment of Lyme arthritis. Infectious disease clinics of North America, 29(2), 269–280. https://doi.org/10.1016/j.idc.2015.02.004
Connor, S. Glaxo chief: Our drugs do not work on most patients. The Indep. 2003, 8, 1–2. https://www.independent.co.uk/news/science/glaxo-chief-our-drugs-do-not-work-on-most-patients-5508670.html
Coughlin, J.M., Yang, T., Rebman, A.W. et al. (2018) Imaging glial activation in patients with post-treatment Lyme disease symptoms: a pilot study using [11C]DPA-713 PET. J Neuroinflammation 15, 346. https://doi.org/10.1186/s12974-018-1381-4
Fallon BA, Keilp JG, Corbera KM, Petkova E, Britton CB, Dwyer E, Slavov I, Cheng J, Dobkin J, Nelson DR, Sackeim HA. (2008) A randomized, placebo-controlled trial of repeated IV antibiotic therapy for Lyme encephalopathy. Neurology. 70(13):992-1003. doi: 10.1212/01.WNL.0000284604.61160.2d. Epub 2007 Oct 10. PMID: 17928580.
Fallon, Brian & Petkova, Eva & Keilp, John & Britton, Carolyn. (2012). A Reappraisal of the U.S. Clinical Trials of Post-Treatment Lyme Disease Syndrome. The open neurology journal. 6. 79-87. 10.2174/1874205X01206010079.
Feng J, Shi W, Zhang S, Sullivan D, Auwaerter PG, Zhang Y. (2016) A Drug Combination Screen Identifies Drugs Active against Amoxicillin-Induced Round Bodies of In Vitro Borrelia burgdorferi Persisters from an FDA Drug Library. Front Microbiol. 23;7:743. doi: 10.3389/fmicb.2016.00743. PMID: 27242757; PMCID: PMC4876775.
Hirsch AG, Herman RJ, Rebman A, et al (2018) Obstacles to diagnosis and treatment of Lyme disease in the USA: a qualitative study. BMJ Open 8:e021367. doi: 10.1136/bmjopen-2017-021367
Johnson, L., Shapiro, M., & Mankoff, J. (2018). Removing the Mask of Average Treatment Effects in Chronic Lyme Disease Research Using Big Data and Subgroup Analysis. Healthcare (Basel, Switzerland), 6(4), 124. https://doi.org/10.3390/healthcare6040124
Johnson, L. (2019) Request for Information (RFI): Input on NIH Tickborne Diseases Strategic Plan.
https://www.lymedisease.org/nih-lyme-survey-results/
Klempner MS, Hu LT, Evans J, Schmid CH, Johnson GM, Trevino RP, Norton D, Levy L, Wall D, McCall J, Kosinski M, Weinstein A. (2001) Two controlled trials of antibiotic treatment in patients with persistent symptoms and a history of Lyme disease. N Engl J Med. 345(2):85-92. doi: 10.1056/NEJM200107123450202. PMID: 11450676.
Krupp LB, Hyman LG, Grimson R, Coyle PK, Melville P, Ahnn S, Dattwyler R, Chandler B. (2003) Study and treatment of post Lyme disease (STOP-LD): a randomized double masked clinical trial. Neurology. 60(12):1923-30. doi: 10.1212/01.wnl.0000071227.23769.9e. PMID: 12821734.
Logigian EL, Kaplan RF, Steere AC (1990). "Chronic neurologic manifestations of Lyme disease". N. Engl. J. Med. 323 (21): 1438–44. doi:10.1056/NEJM199011223232102. PMID 2172819.
Novak P, Felsenstein D, Mao C, Octavien NR, Zubcevik N (2019) Association of small fiber neuropathy and post treatment Lyme disease syndrome. PLoS ONE 14(2): e0212222. https://doi.org/10.1371/journal.pone.0212222
Steere AC, Gibofsky A, Patarroyo ME, Winchester RJ, Hardin JA, Malawista SE (1979). "Chronic Lyme arthritis. Clinical and immunogenetic differentiation from rheumatoid arthritis". Ann. Intern. Med. 90 (6): 896–901. doi:10.7326/0003-4819-90-6-896. PMID 312615.
Lorraine Johnson on behalf of LymeDisease.org
TBDWG December 2, 2020
Toward Greater Transparency and Fairness for the TBDWG
By Lorraine Johnson, JD|MBA
CEO, LymeDisease.org and Principal Investigator of MyLymeData
Today, as we near the end of the TBDWG for this term and look forward to the selection of new panel members for the next term, it is time to focus on transparency and fairness in the selection of public members of the working group. Why is this important? As prominent medical ethics and healthcare policy researchers point out, "what is to be decided is often already decided with the selection of the deciders' (Sniderman and Furberg 2009).
This last working group saw how contentious battles over content can be and patients watched in horror as the only sliver of this report relegated to Lyme disease was on the chopping block but passed with a narrow vote. Had this not happened, the voice of chronic Lyme patients—whose efforts passed this legislation—would have been entirely suppressed. That would defeat the legislative purpose of this group.
What can be done? The patient community asks for two things:
Transparency and fairness in panel constitution: The charter for this working group specifies how members of the government are to be appointed but does not specify how non-government representatives are to be selected. We understand that the appointment of non-government members is made by certain federal members of the group. What is the criteria? What are the standards? Nominations from patient advocacy groups tell you who we think can adequately represent patients, but do nominations matter? How are they taken into account? Whose interests do those appointed represent? What length of term do they serve?
There was no transparency for the selection of members for the current work group even though the working group's Core Values include a pledge for transparency. The public was not timely advised regarding who was selected for the group, how they were selected, or why they were selected. For example, the IDSA announced Dr. Eugene Shapiro's appointment to the group long before the HHS confirmed this publicly—despite public requests for this information. This appointment sent a clear signal to patients that people who dismiss, diminish, and make fun of sick patients could serve as members of a group that is supposed to hold the interests of the patient at the center. Are we to assume that the core values of this group—which include compassion and respect for patients—don't apply to certain members?
The last panel had three patient representatives—this panel we are down to one, Pat Smith. Bob Sabatino, who was a patient representative was replaced with an academic researcher—who has no qualifications to represent the patient interest. Another panel member identifies as an "industry representative" even though the legislation does not provide a role for industry and she is not recognized by or accountable to any patient group.
We would like three representatives who are recognized by the patient community as being capable of representing the patient interest.
Transparency and Fairness in Term Limits:
It was not until just recently that term limits were posted on the working group's website. Every public member's term expires on December 2, 2020—except for three. Leigh Ann Soltysiak and Dr. David Walker's terms expire on June 3, 2021. Why the special treatment for these two? And who is going to be watching out for the patient interests during this six-month time interim period? Dr. Kevin Macaluso was appointed to replace Bob Sabatino who in turn replaced another patient. According to the Working Group Charter, replacements simply serve out the remaining term of those they replace. There should be no out-of-sync panel members. All terms should expire on the same date. This avoids the potential for behind the scenes shenanigans.
After evaluating the nominations, the full slate of working group members should be announced publicly and should specify the legislative role they fill. How else are patients to evaluate whether the full panel is fairly constituted and whether the patient interest is adequately represented?
References:
Sniderman AD, Furberg CD: Why Guideline-Making Requires Reform.JAMA 2009, 301:429-431.
TBDWG, Core Values, TBDWG Meeting #9 June 4. 2020 https://www.hhs.gov/sites/default/files/TBDWG-June-2019-Meeting-Slides.pdf
TBDWG Charter, https://www.hhs.gov/ash/advisory-committees/tickbornedisease/about/charter/index.html
Lynne Halley
My name is Lynne M. Halley. I am a veteran of the United States Navy. I served 16 years before being medically retired. I was enlisted (E-5 my highest rank) for over 8 years and an officer (O-3E my highest rank) for the rest. I moved to Dayton area upon leaving the Navy to be close to a base, and a VA so that I can get care for me and my family. Everything was going well until the end of July 2016 when I was bit by a tick.
I was trying to decide what I would like the working group to know about me. All the symptoms I have had for years. The horrible way I have been treated by doctors. How my life became so horrible after getting bit by a tiny little tick. Maybe, I should talk about my neurological symptoms because they are the worst and made my quality of life drop to zero at one point. Maybe discuss the massive amount of money that I have had to throw at these diseases just to be able to have some kind of life. There is also all the friends and family that I have lost over the years. The depression and anxiety that now plagues my life more than any other point in my life. I really wanted to write just about that. However, I realized my email would look like every other person's comments. All these people who have never met and are far away from each other discuss the same symptoms and way of being treated. Others that had successful careers and marriages, only to lose them due to their health. We are all the same. We all have terribly similar stories on how our lives have become.
We keep hoping for just someone to hear us. Someone to help us without destroying our finances. Someone to believe in us and stop the suffering. Praying so much that we do not think we can pray anymore. This working group for some is a last hope. Last hope to just be heard. Those that want to keep denying and not let the patients be heard, are the ones I would like to focus these statements towards. Why such a big denial? Can you honestly think that so many people that are hurting and never getting help will go away? Not without help. Not without all your help. Do the right thing. Put yourself in the shoes of the those that suffer. What would you do? What would you do if you had no money? What would you do if colleagues, friends, and family quit talking to you? Called you names like hypochondriac or lazy? Would you turn your back on your family if one of them were suffering? Just because a few of the so-called experts that only want to deny the true impact of tick-borne diseases. Why can't we just quit all the politics and do what is right? For mankind. Before it is too late, and this happens to you or a loved one.
Thank you,
Lynne Halley (LT/O-3E/USN-ret)
Dayton, Ohio
Monica White
Dear TBDWG members,
I am writing today on behalf of the Colorado Tick-Borne Disease Awareness Association. As an organization that is focused on elevating awareness in a state that is considered "low incidence" or even "no incidence" for many tick-borne diseases that indeed impact Coloradans, I have great concerns that I do not believe have been adequately addressed.
Presence/Absence of Tick Vectors and Tick-Borne Diseases:
Many of the WG discussions and the proposed report graphics, reference graphics (maps) showing absence of tick vectors or diseases in certain states/regions (especially in regard to black-legged ticks and their associated diseases). However, this absence of vector/disease occurrence is unfortunately not clarified in your report maps/graphics.
In many states, such as Colorado, absence/presence mapping is based on little or in many cases NO surveillance data, and therefore no reporting to the CDC. In fact, Colorado doesn't list many of the tick-borne diseases that occur in humans, pets and wildlife in the US as reportable diseases for the state, for instance Babesia. Although Babesiosis is a nationally notifiable disease, it is not listed on the Colorado State list of reportable diseases. How can a valid assessment be made on the level of risk or occurrence and burden of disease for humans/pets, when no ACTIVE tick/tick-borne pathogen surveillance data is being collected nor are nationally notifiable diseases being tracked in every state?
For example: In this reference below, both Babesia microti and Borrelia bissettii (Lyme disease causing bacteria) were isolated from ticks collected from Colorado wildlife. Ticks that, although presumed to have "nidicolous" behavior (staying close to the host nest), have also been documented in other studies (California and Colorado) to quest openly, as well as to bite humans.
BURKOT, T., SCHNEIDER, B., PIENIAZEK, N., HAPP, C., RUTHERFORD, J., SLEMENDA, S., . . . ZEIDNER, N. (2000). Babesia microti and Borrelia bissettii transmission by Ixodes spinipalpis ticks among prairie voles, Microtus ochrogaster, in Colorado. Parasitology, 121(6), 595-599. doi:10.1017/S0031182000006788
For states like Colorado, that are understudied and lacking standardized and active tick and tick-borne disease surveillance, labeling the state as "low incidence" or "no incidence" sends the message that there is no risk of certain medically important tick vectors nor the many serious diseases that they may transmit. In turn, because the State is labeled as "low risk" or "no risk," there is then no priority given for further study or funding of widespread active surveillance. This results in the vicious cycle of No Risk = No Study/Surveillance and No Study/Surveillance = No Risk.
This cycle perpetuates the problem of "diagnosis by geography" for many residents in Colorado (and other "low risk/no risk" states), especially if patients claim no travel history, or if medical providers are not experienced enough to ask this question, or to recognize the vast number of potential tick-borne diseases/conditions patients may be exposed to. Patients in classified "low risk/no risk" states are repeatedly told that they can not have Lyme disease (or other tick-borne diseases) because "Lyme (or other TBD) doesn't exist here." This classification of "no-risk" for Lyme and many other TBDs is often based on little or no data/surveillance. However, No Data Does Not = NO RISK.
Please review this recently published article below, with special attention to competent vectors of Lyme disease, Babesiosis and other serious human diseases. Lyme and other tick-borne diseases of humans, pets, livestock and wildlife have been reported in understudied, but competent tick vectors in Colorado, Ixodes spinipalpis and Ixodes angustus, that although widely regarded as having "nidicolous" behavior, have been documented to bite humans and pets; and in the case of Ixodes spinipalpis, have been collected from migratory birds in Colorado.
H Joel Hutcheson, James W Mertins, Boris C Kondratieff, Monica M White, Ticks and Tick-Borne Diseases of Colorado, Including New State Records for Argas radiatus (Ixodida: Argasidae) and Ixodes brunneus (Ixodida: Ixodidae), Journal of Medical Entomology, , tjaa232, https://doi.org/10.1093/jme/tjaa232
Low/No Incidence Status is Obstructing Accurate and Early Diagnosis:
"Low Risk/No Risk" labeling of states is an obstruction to early and accurate diagnosis and treatment of disease. If there is no belief by the medical practitioners that are assessing patients that a certain disease can exist endemically (based on CDC and state mapping/ reporting), then these many and varied tick-borne diseases never get considered in diagnosis of patients. Lack of recognition of Lyme and other TBDs results in the lack of accurate diagnosis, laboratory testing and reporting of disease which perpetuates the vicious cycle of No Risk=No Study/Surveillance and No Study/Surveillance=No Risk.
Education and Prevention:
Education and prevention are currently the most important tools available to avoid tick-borne disease infections. Education and prevention efforts are diminished or non-existent in many states labeled as "low risk/no risk," a status that has been determined based primarily on the absence of surveillance efforts. Lack of awareness and education needed for medical care providers to adequately recognize and diagnose tick-borne diseases; and for the general public to recognize and prevent them in these states or when travelling elsewhere, is greatly reduced.
Education and prevention must be prioritized nationally, regardless of where people may live, work, recreate or travel in order to reduce Lyme and tick-borne diseases/conditions. In many states considered "low risk/no risk", the burden of this prevention education and awareness has fallen primarily on advocacy groups. Education, prevention tools (safe and effective repellents) and practices, and resources must be a priority for the Federal government and States to provide to medical providers, residents and visitors (travelers), regardless of where they live, work, recreate or travel.
Action Needed:
More research, as well as standardized active surveillance of ticks/TBDs MUST begin in these presumed "low incidence/no incidence" states. The statement of "Lyme (or other tick-borne disease" does not exist here," that myself and too many other patients have heard, should never be used as an excuse by medical practitioners to rule out a potential diagnosis of Lyme or other tick-borne infection/condition. The dynamic situation of expanding tick distributions as well as newly discovered pathogens, in light of the huge gaps and limitations of surveillance make these proclamations of "low incidence/no incidence" incredibly dangerous to patients seeking care. No Data Does Not = No Ticks/Disease Risk
Graphics and maps used to depict the presence/absence of tick vectors and the diseases they can transmit must be clarified (especially in the WG Report and on CDC website) to identify states from which little or no widespread standardized surveillance is occurring. States that are identified as "no incidence" are not always based on rigorous data collection, nor any data collection in many cases. This situation must be transparent when displaying these visual graphics that include labeled "low incidence/no incidence" states/regions. Perhaps "unknown risk" or " no surveillance conducted" labeling would be more appropriate? No Data Does Not = No Ticks/Disease Risk
Lyme and other tick-borne diseases are resulting in life altering, chronic and debilitating illnesses or death for people that are not being diagnosed and treated early because they reside in states that are categorized as "low incidence" or "no incidence" states or regions where disease is not recognized and little to no surveillance nor tracking of diseases nor the vectors is occurring. No Data Does Not = No Ticks/No Disease Risk
Patients already face great hardship in accessing early, accurate diagnosis and treatment for Lyme and many other tick-borne diseases/conditions. Please do not allow geography to further hinder a patient's access to care by labeling states as "low incidence" or "no incidence," when this label is based on the absence of data.
States would be better served with a classification of "unknown risk" or "unknown occurrence" when a lack of data and/or surveillance is occuring, rather than being labeled as "low risk/no risk assessments," with assessment based on no data or lack of surveillance.
I respectfully ask that you insert a qualifier into all of your tables and graphics for your report to Congress to explain that States that have been displayed as "low incidence/occurrence" or "no incidence/occurrence," for which data collection/surveillance efforts are lacking are noted accordingly. No Data Does Not = No Ticks/No Disease Risk
Thank you,
Monica White
Theresa, NH
Dear Working Group on Lyme,
I went undiagnosed, after having an odd bullseye rash, for 15 years. I was finally correctly diagnosed by working with Lyme specialists (MDs) who know the groups of symptoms to look for, as well as how to interpret test results and where to send them to get most accurate answers. I trust these doctors to have my best interests, improvement of my health, in mind.
However, this diagnosis has been such a long time coming that my life has completely changed in the meantime. I was a full time, working mother of two with a home and energy to care for others. I now am a disabled, part time worker, who struggles to keep up with the physical therapy and joint replacement surgeries I now require thanks to Lyme and co-infections.
Please do not disregard the probability that science will eventually prove, beyond doubt, that people can suffer from this disease for a lifetime, if not caught and appropriately treated early on. Do not disregard the millions of people who's lives have been completely changed by this disease. Not to mention those who have died due to its complications.
Just because we don't understand 100% how Lyme disease works doe not mean we should give up trying to understand it. It will surely provide breakthroughs in healthcare that benefit all humanity!
Theresa, NH
(Patient, mother, grandmother)
Carl Tuttle
I have a question for the members of the Tick-Bone Disease Working Group;
Have you read the public comments from each of the Working Group meetings?
Patient testimony across America is describing an experience that doesn't resemble anything that our public health officials are telling us about Lyme disease. The truth about this life-altering/life-threatening infection remains well hidden from the public through an elaborate racketeering scheme now on trial in Texas District Court.
This racketeering scheme was so well orchestrated that the Co-Chair of this Working Group has been fooled into believing that persistent infection after extensive antibiotic treatment is little more than a religious belief. The fact that a Professor in a Department of Pathology can be bamboozled into ignoring all the evidence that we are dealing with an antibiotic resistant/tolerant superbug shows us just how effective this racketeering scheme is.
One of the tactics of the racketeering scheme was to suppress evidence of persistent infection after extensive antibiotic treatment and then claim there is no evidence. It is no secret that the US Centers for Disease Control has aligned itself with the defendants of the Lisa Torrey vs IDSA lawsuit. You won't see any references to failed treatment on the CDC Lyme website. Why is that Dr. Ben Beard?
On Nov 19th Baylor College of Medicine along with Texas Children's Hospital's Center for Vaccine Development announced that they received an $860,000 grant from the Department of Defense (DOD) to develop a recombinant protein vaccine for Lyme disease.
This work is supported by the Congressionally Directed Medical Research Programs, through the Tick-Borne Disease Research Program under Award No. W81XWH-20-1-0913.
Source:https://www.bcm.edu/news/department-of-defense-funds-development-of-a-new-lyme-disease-vaccine
So one again we see the focus on a vaccine while hundreds of thousands (if not millions worldwide) suffering from chronic Lyme are left to fend for themselves; similar to the sicken-in-place mandate for Covid-19 while we wait for that vaccine.
Source: https://www.trialsitenews.com/as-hospitals-fill-doing-nothing-is-no-longer-an-option-against-covid-19-this-is-war/
Where is the Tick-Borne Disease Research award to find a cure for chronic Lyme disease?? This is a public health emergency!
Until we stop pretending that a crime hasn't been committed here, we will have yet another decade of unimaginable pain and suffering.
Carl Tuttle
Member of NH Governor Chris Sununu's HB490 Commission to Study Lyme Disease
Phyllis Mervine
What Do Patients Want from the TBDWG?
By Phyllis Mervine, Founder and President, LymeDisease.org
Long-existing fault lines cracked wide open by the last meeting of the TBDWG, culminating in an 8-6 vote in which the patient team won a slim majority. For a process that attempted to be consensual, it was sobering—though hardly surprising—for patients to witness once again the shallowness of the commitment of certain government representatives to work with the patient community to address the problem of chronic Lyme disease with open minds.
There is a pervasive mindset at NIH, CDC and of course IDSA that if you've been treated with a standard course of antibiotics, or maybe two, and are still sick, more antibiotics won't help. Dennis Dixon, Chief of the Bacteriology and Mycology Branch, NIAID, said as much at the last meeting and I have no doubt he believes it. They are fond of quoting the official conclusions of the NIH-funded trials on retreatment, although the trial I served as a patient representative on—the Klempner trial—does not provide evidence supporting the broad conclusions they drew. Here is the headline published (in June 2001) after the Data Safety Monitoring Board prematurely terminated the trial.
Clinical Alert: Chronic Lyme Disease Symptoms Not Helped by Intensive Antibiotic Treatment
NIAID seized on the hastily terminated trial that enrolled too few patients for statistical significance and used a protocol that was criticized beforehand for not being aggressive enough to broadcast its conclusions widely in a clinical alert that was picked up by major media outlets. (https://www.nlm.nih.gov/databases/alerts/lyme.html ) Although only one treatment was tested—a medication choice and treatment duration that many thought before the trial were likely to be inadequate—and although our NIH Lyme program officer Phil Baker had promised us future trials of different treatments and durations to answer concerns that this trial might be used to limit treatment options for patients--the results of that trial have been used to deny care to patients ever since.
In the 20 years since that publication, other NIH-funded studies, like those from Krupp and Fallon, had mixed results, showing benefit in some patients, or temporary benefit with relapses after treatment was withdrawn. NIH spun all of them as being the last word in showing that more treatment is useless, in fact, it may even be dangerous. When Fallon's study was published, the same journal also ran—in the same issue—an editorial by John Halperin titled "Prolonged Lyme disease treatment. Enough is enough," in effect taking antibiotics off the table for future patients like Fallon's, some of whom had experienced transient improvement on ceftriaxone. Many studies since have documented the persistence of Borrelia burgdorferi in humans and animals despite antibiotic treatment, biofilms, cyst forms, and the like. Others critiqued the trials for being too small, for not being generalizable, and for having statistical flaws.
Nothing has really made a dent in the prevailing mindset at NIH and the CDC. They are using conclusions from old clinical trials to shut door on new science and to limit innovation. The CDC preferentially cites IDSA authors on its website and the vote at the recent Working Group confirmed this bias. The Working Group however has agreed that the science is limited and shared medical decision-making may be appropriate (see Recommendation 7.1 below).
When the science is unsettled, the rational response is to generate more evidence. Conducting more trials is costly and time-consuming. Alternatively you can set up patient registries (as LymeDisease.org has done) and follow the lead of community physicians who are trying new ways to help their patients. In the Lyme community, only 6% of people in the US with persistent symptoms see infectious disease specialists. ILADS trained doctors are our "community physicians." The ILADS guidelines (although the CDC does not acknowledge that they exist) allow for clinical judgment and encourage innovation.
Patients can't wait for randomized control trials and it's unconscionable to ask them to wait for the results of trials you don't have any plans to conduct. We do, however, want solutions, and we figure that 40 years into the epidemic that it's not too soon to ramp up our demands. The NIH-funded trials have been criticized legitimately. It's unethical to curtail clinical innovation when current protocols leave so many people suffering and dying.
Lyme Needs a Manhattan Project
Ken Liegner, MD, a prominent Lyme-treating physician from New York, called for an all-out effort to combat the Lyme epidemic in 2014. He writes:
Most problems have solutions, but in order to address them, they must be acknowledged. If we could put a man on the moon, we can solve the problems posed by Lyme disease and other tick-borne infections. We just need the will to do so.
His article in the Poughkeepsie Journal is still available in their archives. (https://www.poughkeepsiejournal.com/story/opinion/valley-views/2014/03/20/valley-views-tick-borne-infections/6653363/)
Lorraine Johnson, JD, MBA, and Raphael Stricker, MD, make a similar call in their peer-reviewed article Lyme Disease: Call for a "Manhattan Project" to Combat the Epidemic:
[W]e need to establish a "Manhattan project" along the lines of the approach to the HIV/AIDS epidemic. First, an inclusive panel of clinicians, researchers, patients, and government officials should be established to determine the new approach to Lyme disease using the type of panel balancing recommended by government guidelines for controversial diseases.
This effort would mirror the government-supervised approach to HIV/AIDS that was used to ensure high test sensitivity for that disease, as described above.
A coordinated "Manhattan project" similar to the attack mounted against the HIV/AIDS epidemic is urgently needed to address the serious worldwide threat of Lyme disease.
(https://journals.plos.org/plospathogens/article?id=10.1371/journal.ppat.1003796)
We need to encourage doctors to try different approaches and share their results. The medical board prosecutions of doctors who don't follow the IDSA standard of care (which Liegner terms "official sanctioned medical neglect") must stop.
Patients Should Be at the Center
To overcome government resistance and institutional bias, patients need strong representation on the Working Group. We need more transparency into how members are selected, and more input into which members are selected. We need people with lived experience of Lyme disease, like those on the LDA list of nominees for the 2021 Working Group, which LymeDisease.org endorses. Applicants must be screened for conflicts of interest. They should not be on record as denigrating and insulting patients, as Dr. Shapiro has an extensive history of doing. (Nearly 39,000 people have signed an online petition to remove Dr. Shapiro from the Working Group. [https://www.change.org/p/tick-borne-disease-working-group-remove-eugene-shapiro-from-federal-tbd-working-group-135a8441-163f-4277-8f22-523e92b9ecf2 ]) It goes without saying (since the Working Group was established under FACA rules) that all meetings should continue to be public and there should be no attempt at back room dealings as was reported at this last TBDWG meeting.
What the CDC should do
A big problem for patients is that the CDC promotes one standard of care on its website while it chooses to ignore the only standard of care that both meets the National Academy of Medicine (NAM) standard for trustworthy guidelines, i.e. the ILADS guidelines, and helps patients with the chronic form of Lyme disease. Although the endorsement is implicit, not explicit, their treatment section cites only IDSA sources and the CDC diagnosis recommendations are identical to those of IDSA. The CDC statement on so-called "Post-Treatment Lyme Disease Syndrome" states without evidence that "most cases of Lyme disease can be cured with a 2- to 4-week course of oral antibiotics," parroting the IDSA belief.
Currently there is a complete lack of transparency, peer review, and accountability in the CDC regarding highly influential information they disseminate. Other agencies, like the EPA, are much more transparent in their processes.
The CDC website reflects one viewpoint, that of the IDSA. They don't acknowledge the ILADS standard of care at all, although it meets the strict standard for trustworthy guidelines from the National Academy of Medicine (NAM), which the IDSA guidelines do not.
Recognize the Two Standards of Care
It is a positive sign that the Working Group voted to include—albeit not without disagreement—Recommendation 7.1 in its report to Congress.
Recommendation 7.1: Recommend Federal government websites and educational materials and seminars for clinicians, the public, and public health departments, which discuss Lyme disease, provide information that the state of the science relating to persistent symptoms associated with Lyme disease, is limited, emerging, and unsettled; and increase public awareness that there are divergent views on diagnosis and treatment. Consider that shared medical decision-making may be appropriate in some circumstances.
Criticism has been leveled at the ILADS guidelines, however the authors are able to make a strong defense. One critic stated that "[t]heir designation as 'evidence-based guidelines' belies their anecdotal nature and lack of coherent and evidence-based guidance…. "[They] have not provided any credible clinical or scientific evidence to support prolonged antibiotic therapy." The journal published ILADS guidelines authors Lorraine Johnson and Elizabeth Maloney's response [excerpted below]:
The National Academy of Medicine (NAM) reaffirms the role of clinical judgment and patient preferences, as does the widely used evidence assessment scheme, GRADE.[26,27] As NAM notes, conflicting guidelines most often arise when evidence is weak, organizations use different assessment schemes, or when evidence developers place different values on the benefits and harms of intervention.[27]
Such is the case here. Using the same evidence base, the IDSA overstates the quality of the evidence and based on its values provides no care for patients who remain ill. ILADS recognizes the heterogeneity of patients' prior treatment history, ongoing manifestations, comorbidities and therapeutic responses as well as the heterogeneity of their values and goals.[1] ILADS and NICE guidelines share concerns about the limitations of the current testing, the low quality of evidence, and recognize the role of clinical judgment when assessing whether to treat or to continue treatment.[1,5]
The ILADS guidelines encourage clinicians to individualize care by engaging in shared decision-making with their patients and to closely monitor patients during retreatment, adjusting therapies when necessary.[1] Perhaps this is why only 6% of US patients with persistent Lyme disease report being treated by IDSA clinicians,[28] with the rest choosing to be treated by clinicians who are more willing to provide further treatment utilizing innovative approaches.
I invite you to read the rest of the response at https://www.lymedisease.org/bmj-response-ilads-lyme-guidelines/
In conclusion, the clinical trials have been limited and the results conflicting. The science is unsettled. When science is unsettled you need to present options and defer to clinical judgment and patient preferences. It is unethical simply to ask extremely ill patients to wait for research no one is even talking about, let alone funding. CDC should not be taking sides in a professional turf war, promoting one side while pretending the other doesn't exist, while patients lie dying on the battlefield. Patients need treatment options now.
Lucy Barnes
Lucy Barnes Opinion Of The Second Congressional Report- 2020
Hijack- to take control of or use something that does not belong to you for your own advantage.
We’ve been hijacked! ALL of us- the general public, our medical professionals honoring their oath to first do no harm, people who have contracted Lyme disease, patients who have gone on to develop chronic Lyme disease and anyone who has tried to honestly help us. Our science, our principals, our honor, our commitment and our loyalty to our chronically ill patients has been picked apart, dismissed and hijacked.
It really should be no surprise since every meeting, working group, conference, legislative bill, task force and even the IDSA treatment guidelines over the years has seen the same fate. They’ve all been hijacked. We’ve all been hijacked.
What was originally designed to help society, and more specifically to help chronically ill Lyme patients, has only served to hurt them with this TBDWG report.
Currently, in our most recent attempt to find help for the suffering, we are desperately trying to work with government employees who have never treated a Lyme patient, much less a chronically ill Lyme patient. What’s that about?
There are other members of this group that have never treated chronic Lyme or had chronic Lyme so they have absolutely no personal insight or experience with it. Why are they here? Who is running this gig?
It is not our thoughts in this report. It is NOT our words. It is NOT our wishes. It is NOT our concerns. It is NOT our science. It is NOT our votes, and it certainly does NOT speak to our needs.
And to be clear, the contents of this report is NOT our message. It is the government’s message- to the government. Bouncy bounce back and forth- government agency to government agency. It is a flawed super minority report because WE, the patients, ARE the majority and once again, the millions of us who are suffering have not been accurately represented by most of this group’s members or in this government’s blah, blah, blah, report.
For example- David Walker, what do you know about treating chronically ill Lyme patients? NOTHING! Yet, you’ve been sucking up Rickettsia related NIH grants for decades now, year after year, to the tune of at least $133 million dollars (representing the ones I could find). Is that your claim to fame that got you on this TBDWG? They pay you and you do their dirty work?
And what do we, the tick borne diseases patients, have to show for all the money you’ve been given by the NIH? NOTHING!
We still only know what we’ve known for over a century- that there are Rickettsia illnesses transmitted by ticks that cause human illness. That is the same knowledge we had before you stuck your nose in the money trough- so nothing new there.
We still, under your watch and that of another TBDWG member, Kevin Macaluso, have no signs indicating the slowing of the disease- it is still spreading and casualties are increasing in numbers. We have no better tests for detecting the spotted fevers and no better treatments than we originally had. And after decades of money being shoveled your way, we still have no vaccine! Wasn’t that your ultimate goal?
The only thing you have to offer this TBDWG is contempt towards some of its members and the patients who are counting on you to help. You, David Walker, are guilty of protecting the ones who feed you (NIH/CDC). That’s shameful.
And Eugene Shapiro- what the heck are you doing on this committee- when, that is, you can be bothered to actually attend? You’ve never treated anyone with chronic Lyme disease and you’ve blown it with the recently bitten patients by giving them bad advise and inadequate treatment.
We know this because you’ve shared publicly over the years that you don’t believe CHRONIC Lyme exists and we’ve watched your patients beg for help when you’ve wrongly dismissed their complaints and refused to treat them.
You have boldly testified against Lyme treating doctors, including one of our very dearest and best- Dr. Charles R. Jones in Connecticut. They are trying to clean up your messes and failures to give people a better quality of life. Yet, you and your buddies try to slay them all.
You have testified against chronically ill Lyme patients to help deny them disability benefits. How low can you go? You have financial conflicts of interest tied to vaccines. You were a coauthor on the discredited 2006 IDSA Lyme disease guidelines that have been responsible for destroying many lives and not allowing patients to have their diagnostic and treatment costs covered by your friends in the insurance industry.
You are a board member of the American Lyme Disease Foundation (ALDF) that falsely claims it represents patient’s interests. Nothing can be further from the truth.
You are currently a named defendant in Torrey vs. IDSA, et. al., a Lyme related case that addresses some of the atrocities we have, and continue to face. You were targeted and flogged by the CT Attorney General (Blumenthal) for some of the wrong-doings you were involved with that went against patient’s interests.
Indeed, patients had already had enough of your stuff that the petition to remove you from this group garnered over 38,000 signatures before you even got started.
So why Mr. Shapario, are you still here? Who wrongly put you on this committee in the first place and who is responsible for not removing you?
Mr. Dennis Dixon- We’ve watched your comments over the years and I can say they surely don’t do anything to help chronically ill Lyme patients. I can’t decide if you should get a trophy with a little train on it for railroading your personal agenda down our throats; or maybe a certificate with a picture of a straw hat on it for thinking we are just a bunch of hayseed cowboys who don’t know better; or perhaps a gold shovel to celebrate your years of trying to bury us.
I can’t imagine how you sleep at night after all you’ve done to hurt so many. I’d ask, however, you probably have a typical canned answer for that too. At least when the President is accused of doing something people don’t like he can answer the question honestly by saying… How do I sleep at night? I sleep naked and with a super model. How about you Mr. Dixon?
Ben Beard- you’ve had all the time in the world to fix this situation, yet all we get from you are delays and lies on top of lies. What have you accomplished for chronically ill Lyme patients? NOTHING! Government (tax payers) money ends up in your pocket month after month while you keep trying to undermine chronically ill patients, try to disparage them, and try to shut them up while falsely giving them hope things will get better. That’s twisted for sure.
Under your leadership do we have a good test for Lyme yet Mr. Beard? No! Are we seeing less cases of Lyme disease across the country? No! Do we have better prevention methods yet? No! Are the reported numbers accurate? Not by a long shot! Do we have a successful vaccine yet? No! Do we have anything besides the horrible CDC promoted 2000/2006 IDSA Lyme guidelines that can provide doctors and patients with successful treatment plans and access to the most recent studies? No!
And the co-chair of the TBDWG, Leigh Ann Soltysiak. Hmmmmm? Why on earth are you even in this group, much less being assigned the co-chair’s job? So maybe you had Lyme disease years ago and recovered? If so, you have no clue what REAL chronically ill Lyme patients are going through. HHS says you are a Lyme & tick borne disease advocate. Since when? I’ve been doing this for over 30 years and I’ve never heard of you, nor have many others who volunteer to help sick patients. You are not a research expert, or a doctor treating these patients are you? No! BTW- Your comment after your vote on the patient’s chapter was uncalled for, as were the others. And it would help if you stopped trying to save your job, and, if you plan to be here, at the least do your job.
In Summary- Many thanks to those who took this job seriously. There were few of them, but they managed to hold off the wolves and prevent them from doing much more harm to our patients.
I can only hope that the next TBDWG will be more representative of the real chronically ill patient community and the doctors treating them, and that members won’t spend their time fighting us as they’ve been doing since day one. We need people who care and have a drive to move us forward.
We need members who will not be focused on just keeping the status quo. We need members who will show up to meetings, not leave early, not try to cram 8 hours of work into 18 minutes during a meeting and skip or bypass what doesn’t fit. We need to stop relying on the old clinical trials that were totally flawed and twisted and the pitifully poor IDSA Lyme disease guidelines.
We are in desperate need and have been ignored and pushed down for too long. Sooooo… here is my message for the next TBDWG, if there is one…
There IS such a thing as CHRONIC Lyme disease. It needs to be addressed. The sick patients need help. We need to move forward, so…
It’s time to fish or cut bait.
Or better yet, it’s time to poop or get off the pot.
Lucy Barnes, Director
Maryland Lyme
