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The Lyme Voices You Didn’t Hear at TBDWG Meeting

The Tick-borne Disease Working Group (TBDWG) issued a public request to hear from patients willing to share their stories for its July 8, 2020 meeting. It’s an important part of these meetings, where the public and the TBDWG members can hear directly from patients, to better understand the dire need for answers and results.

Four of Global Lyme Alliance’s Educational Ambassadors submitted their public comments for this meeting. We’d like to highlight their stories and share them with you now. Below are the unedited submissions from Lyme patients Fawna Bough, Rhonda Howdyshell, Jen Kenley, and Robin Reich.


Fawna Bough

Fawna Bough_TBDWGMy name is Fawna Bough and I have struggled with tickborne diseases (Lyme, Babesia, Bartonella, Ehrlichiosis) for at least 14 years. I struggled for years to get a diagnosis which finally came in 2015. Since then I have been battling these tickborne diseases–most of which the costs have been solely my burden to bear as my insurance refuses to pay for most of the treatments, and my doctor appointments, related to my illness.  I have spent 10s of 1000s of dollars fighting this disease. The financial burden has changed most every plan I had for my life and retirement. I had to retire early from a job that I loved, realized that most of my family and friends thought I was a hypochondriac as I watched them distance themselves from me, and I continue to fight these diseases on a daily basis.

This disease brought me to my knees and almost took my life. I have heart and neurological involvement, have been bedridden, have permanent muscle damage, the list goes on and on… and I still struggle with mobility from time to time. These diseases have disrupted my immune system so much that I have now progressed into other issues i.e. POTS, Reynauds, etc. I will also share that these diseases have sadly changed me from the inside out. My personality morphed into a person that I literally did not recognize and I’m still trying to get myself back.  The neurological suffering of patients like myself is simply indescribable.

I am grateful that the Tick-Borne Disease Working Group is allowing TBD victims to voice their comments as this disease changes the trajectory of your life in every way possible. The barriers that are currently in place that discard us as patients need to be removed quickly and permanently.  There have been a variety of treatments that have been prescribed to me to help me heal; however, because of my diagnosis of TBD, my insurance will not approve those treatments due to their claim that chronic TBD does not exist and/or because the treatments that I prefer lean more toward holistic healing vs. traditional Western medicine. The treatment decisions for any disease should fall solely on the patient. There should be equality toward coverage of both holistic and traditional medicine.

I have suffered long enough, as has my fellow Lyme Warriors.  There are thousands of children that are getting TBD and not being diagnosed and these kids are being set up for a lifetime of suffering.  We have NO RELIABLE TESTING.  We have NO CURE.  Please help us gain equality in treatments.  Please help us.

Thank you for your time and consideration.

Fawna Bough
GLA Education Ambassador, Illinois


Rhonda Howdyshell

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

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

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

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

So my advice is:

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

Rhonda Howdyshell
GLA Education Ambassador, Virginia


Jen Kenley

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

My life (and my 5 year old’s) is (are) in your hands.

Jen Kenley
GLA Education Ambassador, Tennessee


Robin Reich

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

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

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

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

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

Robin Reich
GLA Education Ambassador, Florida

 

Lyme Patients, Make Your Voice Heard

Time-sensitive: Act now to make your voice heard at the national level by submitting your comments to the tick-borne disease working group by June 24th

Science shows that chronic Lyme exists. Now it’s time for government agencies to acknowledge it, specifically the CDC.

Make your voice heard to create change at the national level. Please submit your written or verbal comments to the Tick-Borne Disease Working Group by June 24, prior to their next meeting on July 8.

In the last meeting of the TBDWG, the panel argued over whether to update its guidelines on diagnosing and treating Lyme disease. After more than an hour, CDC spokesperson Ben Beard stated, “The vast majority of Lyme disease patients are served quite well by the guidance we have on our website.” This is unacceptable, because:

  1. Lyme disease is a public health crisis. Research shows that two million people could be suffering from post-treatment Lyme disease (PTLD) by the end of 2020.  According to a joint study conducted by scientists at Global Lyme Alliance (GLA) and Brown University, more than two million people in the United States could suffer profound disability from PTLD by the year 2020. Noted researcher and former chair of the TBDWG John Aucott, M.D., states that … “These numbers are on par with other important public health threats such as HIV. When combined with the recognized severity of PTLD for patients, the impact is even more significant.”
  2. Science shows that while most patients recover when diagnosed and treated early, up to 20% remain ill.
  3. Science shows that when Lyme is not treated early, due to being undiagnosed, misdiagnosed, inaccurate diagnostic tests, etc – it’s harder to eradicate the disease and the symptoms it brings.
  4. Many physicians follow CDC guidelines on diagnosing and treating illnesses such as Lyme disease, based on the CDC proactively marketing to physicians and the CDC serving as an approved resource for the medical community. Therefore, if the CDC does not acknowledge any stage of Lyme other than acute, neither will physicians. This directly harms patients.

Part of the CDC’s mission states “ … As the nation’s health protection agency, CDC saves lives and protects people from health threats. To accomplish our mission, CDC conducts critical science and provides health information that protects our nation against expensive and dangerous health threats, and responds when these arise.” By denying the existence of post-treatment Lyme, persistent Lyme, and chronic Lyme disease, the CDC is not protecting people from health threats and serving in the best interest of patients and the general community.

Make your voice heard:

 

 

scientific advisory board

GLA Counters IDSA’s Criticisms of Tick-Borne Disease Working Group Report

GLA’s Chief Scientific Officer Provides Evidence-based Rebuttal of IDSA Letter to Head of HHS and Tick-Borne Disease Working Group Report

 

by Timothy J. Sellati, Chief Scientific Officer, Global Lyme Alliance

Last month, the Tick-Borne Disease Working Group (TBDWG) published its first report to the U.S. Congress, outlining an integrated, multi-pronged approach to the growing public health challenges posed by tick-borne diseases in the U.S. In response shortly thereafter, the Infectious Diseases Society of America (IDSA) sent a letter to to the Secretary of the U.S. Department of Health and Human Services (HHS) stating that if some key recommendations of the TBDWG are implemented, it “would cause significant harm to patients and public health.”

Below is a rebuttal to IDSA’s unfounded criticisms of the TBDWG, which we find hyperbolic in light of the hundreds of man hours worked on the part of dozens of stakeholders dedicated to collecting, collating, and drafting a roadmap to advance the prevention, diagnosis, and treatment of patients suffering from Lyme and other tick-borne diseases.

IDSA’s letter suggests that there are “significant concerns with the working group’s lack of transparency and minimal opportunities for meaningful public input.”

  • The basis for this concern is unclear given that a substantial effort was made to be inclusive of professionals within the academic research community, physicians at renowned academic institutions and in private practice, as well as members of the general public in the form of patients suffering from Lyme and other tick-borne diseases and their advocates. Through contacts with their colleagues and fellow patients sitting on the TBDWG a free flow of ideas and opinions has passed between various stakeholders not part of the working group as well as those on it. The more likely concern of the IDSA is that it could not control the working group’s deliberations and final report through which it means to ensure consistency with the society’s long-held, and some would argue entrenched, ideas about tick-borne disease. Paramount is IDSA’s long-held view that Lyme disease is easy to diagnose, easy to treat, and only very rarely results in lasting consequences of infection. On the contrary, the overwhelming consensus among tick-borne disease researchers is that Post Treatment Lyme disease Syndrome occurs in 10 to 20% of those who received early treatment.

 

IDSA’s letter also suggests that if implemented, some recommendations of the TBDWG “would cause significant harm to patients and public health.”

  • Besides IDSA’s having only very limited support in the peer-reviewed scientific and medical literature regarding unsafe alternative treatment options, this hyperbole seems intended to spread fear, especially when one takes into consideration tick-borne disease researchers’ ever-evolving clinical understanding of Lyme disease, as opposed to the IDSA’s obsolete mantra that Lyme is easy to diagnose, easy to treat and only rarely results in lasting consequences of infection.

 

We urge you to ensure that the federal government response to tick-borne diseases is solidly rooted in the best available scientific evidence.”

  • Any claim that the TBDWG is not solidly rooted in the best available scientific evidence is unfounded. TheTBDWG report draws from the efforts of subject-matter experts from such diverse organizations as Johns Hopkins University School of Medicine; Office of the Secretary, U.S. Department of HHS;Stanford University Lyme Disease Working Group; Deputy Director, Division of Vector-Borne Diseases, Centers for Disease Control and Prevention (CDC); Chief, Bacteriology and Mycology Branch, National Institute of Allergy and Infectious Diseases (NIAID); Medicare Hospital Health and Safety Regulations, Centers for Medicare and Medicaid Services, U.S. Department of HHS; Population Health Sciences and Health Services Research Center of the Institutional Centers for Clinical and Translational Research, Boston Children’s Hospital; Vector-Borne Disease Laboratory; and Maine Medical Center Research Institute, just to name a few.

 

IDSA suggests that the makeup of the TBDWG is “skewed to individuals with perspectives that do not align with the overwhelming majority of scientific evidence regarding the diagnosis and treatment of Lyme disease.”

  • Evidently, one organization’s definition of “skewed” is another group’s diverse voices, opinions, and peer-reviewed evidence. Ultimately it does not benefit the scientific and medical research enterprise nor the Lyme and other tick-borne disease patient community to hew to the notion IDSA promulgates, which is that “Lyme disease is easy to diagnose, easy to treat, and only very rarely results in lasting consequences of infection”. Moreover, one could effectively argue that at least a subset of IDSA members hold perspectives about the persistence of Lyme borreliosis despite initial antibiotic treatment and see the desperate need for alternative treatment strategies that “do not align” with current scientific evidence.

 

While IDSA acknowledges that the CDC case definition for Lyme disease is intended for use as an epidemiological tool, they suggest “it is it is incorrect to promulgate the notion that the components of the surveillance definition should not be used for clinical diagnosis”.

  • However, it is important to note as the CDC itself mentions throughout its webpage that the case definition provided is for purposes of surveillance. Nowhere is it mentioned that the case definition criteria listed should be used for clinical diagnostic purposes alone. The CDC goes on to state that “Surveillance case definitions establish uniform criteria for disease reporting and should not be used as the sole criteria for establishing clinical diagnoses, determining the standard of care necessary for a particular patient, setting guidelines for quality assurance, or providing standards for reimbursement.” Finally, the spurious nature of IDSA’s suggestion that components of the surveillance definition could or should be used for clinical diagnosis is evident in the fact that CDC research has confirmed that annual clinical case numbers for Lyme disease are approximately 10-fold higher than the number reported by the CDC. This upward revision of annual Lyme disease cases suggests that considerably more early Lyme diagnoses are being missed than are the result of inaccurate, ultimately non-Lyme, diagnoses being made.

 

IDSA acknowledges that “some patients who are successfully treated for Lyme disease continue to suffer from persistent symptoms after treatment”.

  • This statement is illogical, however, because a patient who continues to suffer from symptoms caused by infection cannot or should not be classified as successfully treated.

 

IDSA states that “There is clear, widely accepted scientific evidence indicating that a 10-28-day course of antibiotics, depending on the stage of Lyme disease, will kill the Lyme disease bacterium in humans in all but the rarest of cases”.

  • Unfortunately, IDSA refuses to acknowledge that there also is clear, widely accepted and compelling scientific evidence indicating that 10 to 20% of patients receiving a 10-28-day course of antibiotics progress to Post-Treatment Lyme Disease Syndrome, which has a clear clinical definition, or the more broadly clinically-defined state of chronic Lyme disease. If one considers the number of CDC-reportable cases for 2016 of 364,290 (based on surveillance case reporting to CDC multiplied by a 10-fold factor to account for estimated underreporting) then 36,429 to 72,858 patients annually progressing to PTLDS/chronic Lyme disease cannot reasonably be considered a rarity.

 

IDSA supports more research to improve diagnostic tools for Lyme disease and they correctly state that it is essential that clinical education is rooted in the best currently available evidence.

  • Yet it is unclear that medical school educators are explaining to students that the best currently available evidence suggests that a large percentage of patients suffer persistent symptomatology as a result of misdiagnosis of early Lyme disease due to deficiencies in the current two-tier test. It is also unknown whether students are instructed in the atypical size, shape and coloration of the erythema migrans (EM) rash, rather than the classic “bull’s-eye” rash, that can be observed in some, but not all Lyme patients. In fact, despite IDSA’s claims, according to the CDC only 70 to 80% of patients with Lyme disease reported to its surveillance system the presence of an EM rash.

 

IDSA supports increased federal funding for responses to tick-borne diseases and correctly notes that higher level funding should not come at the expense of funding for other diseases, including HIV. The IDSA letter goes on to state that “Pitting one disease against another, as suggested in the draft report, is counterproductive and costly.”

  • While everyone can agree with the former statement, the latter is a mischaracterization of the content and intention of the TBDWG report. Suggesting that the level of funding for Lyme and other tick-borne diseases should be commensurate with the case incidence rates is not pitting one infectious disease against another; it is, rather, a fair-minded plea for equitable distribution of limited funds based on current public infection risk. Making comparisons between Lyme disease and HIV merely highlights the disproportionate distribution of funding if one looks solely at case incidence rates for the two diseases.

 

Please reach out to [email protected] with any questions.


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