Patients Speak Up at TBDWG Meeting – You must address persistent infection and chronic Lyme disease. Doctors are Clueless!
https://www.lymedisease.org/carl-tuttle-tbdwg-comments/
Tuttle directs pointed questions to TBD Working Group member Shapiro
Carl Tuttle, a long-time Lyme activist from New Hampshire, gave the following remarks by telephone to the Tick-Borne Disease Working Group on Sept. 15.
This comment is directed to Dr. Eugene Shapiro.
Dr. Shapiro, I sent you an email on September 2, with a list of references identifying persistent Lyme disease after extensive antibiotic treatment. As I mentioned in the letter, an astute fifth grader with access to PubMed could find those references and many, many more.
What I didn’t share with you is a 1991 positive culture report I have from the Centers for Disease Control in Fort Collins, Colorado where the CDC cultured the spirochete from the cerebrospinal fluid of Dr. Kenneth Liegner’s patient, Vicki Logan despite prior treatment with intravenous antibiotics.
Her autopsy report shows histopathologic findings consistent with neurologic manifestations of chronic Lyme disease. Lyme patient Vicki Logan died after the insurer refused additional IV antibiotics. This is medical execution.
Dr. Shapiro, you neglected to answer my question which was: “Could you please explain your motivation for suppressing evidence of persistent infection after extensive antibiotic treatment and then claiming there is no evidence?”
The following comment is directed to Pat Smith, Patient Representative:
This denial has led to the disease being misclassified as a low-risk and non-urgent health threat when in fact we have been dealing with an antibiotic resistant/tolerant superbug and patient testimony all across America is describing a disease that is ruining lives, ending careers while leaving its victim in financial ruin.
A chronic relapsing seronegative disease as you know should have set off a red flag but its misclassification as a simple nuisance disease has left hundreds of thousands if not millions worldwide in a debilitated state.
I respectfully ask that you hold Dr. Shapiro’s feet to the fire and demand an answer to my question before proceeding with today’s agenda. A copy of Vicki Logan’s positive culture report and autopsy results will be sent to the members of the Tick-Borne Disease Working Group immediately following this comment.
Click here for more information from Carl Tuttle, including details about the case of Vicki Logan. He also sent us the following picture and requested that we include it with this blog.
Says Tuttle: “By the time I was finally diagnosed with chronic Lyme in the fall of 2008, I was bedridden, on oxygen, and near death. Here’s a picture of me with my oxygen concentrator and tank.”Erin Walker: “We Need Tests, Treatment, And Recognition That Lyme Is Real”
Erin Walker delivered the following remarks by telephone to the Tick-Borne Disease Working Group on Sept. 15, 2020.My name is Erin Walker and I am the wife of PGA Tour winner Jimmy Walker. I am also on the Board of Directors the Global Lyme Alliance.
After five months of battling what he thought was the flu, my six-time PGA Tour-winning and major champion husband Jimmy Walker tested positive for Lyme. Living in Texas, had it not been for his sports psychologist, we NEVER would have been tested for Lyme.
After extensive blood work, he was positive for Lyme, West Nile, mono, two types of bacterial pneumonia and a virus called CMV. All these illnesses were active in his system at one time.
He had 18 months of treatment and yet he still battles exhaustion, depression and flu-like symptoms. The disease has wreaked havoc on his career and due to the neurological affects of Lyme, we aren’t sure he can continue to play high level competitive golf anymore.
I myself was diagnosed with Lyme in 2017, after experiencing a completely different set of symptoms from my husband. I completed a 9 month pulsed course of antibiotics. Although mild, I still have days where I experience symptoms of Lyme.
Both Jimmy and I consider ourselves lucky because we were diagnosed correctly and are able to live active, normal lives. Which is certainly not the case for many Lyme sufferers living in our country.
Accurate testing is essential
While the designation is important, accurate testing is the foundation. Doctors must recognize that Lyme can present with over 100 different symptoms. If given access to more accurate testing, thousands of patients may be able to avoid the prolonged affects of this awful disease, regardless of a chronic or post-treatment Lyme designation by this group.
People are sick. And, they deserve better. We are seeking access to accurate testing, insurance coverage for this disease, employers recognizing that this is real.
The stigma, doctor ignorance and public shaming that surrounds this disease needs to be rectified.
We are a household of four from south Texas and now three out of the four of us have tested positive for a tick-borne disease. Yes, three out of the four in a state that you do not think of for tick-borne diseases; my husband and I for Lyme, and most recently our seven year-old son for Babesia. None of us saw a tick or a bite and only our son had a small rash that his pediatrician refused to treat.
People in this community will NOT stop fighting until we get better. Better testing. Better treatment. Better recognition for the fact that Lyme is a real disease that affects real Americans.
Thank you for your time and attention to my comments.
Follow Erin Walker on Instagram: @tourwifetravels.
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https://www.lymedisease.org/monica-white-tbdwg-comments/
Lyme has devastated my family–physically, financially, socially, and emotionally
The following was submitted as a written public comment to the federal Tick-Borne Disease Working Group.
By Monica White
I am writing today as an advocate, as well as a patient, wife and mother of two children with persistent Lyme disease and multiple co-infections.
I served as a subcommittee member for both of the Tick-Borne Disease Working Group panels. This year’s panel is vastly different from the first panel (2018) in that there has been a huge lack of patient representation in the Working Group as well as within subcommittees.
What happened? With Pat Smith as the lone patient representative on the Working Group, she is shouldering the weight of the entire community alone—a community for which this Working Group was mandated to address to improve their quality of life.
This lack of patient representation has resulted in the issue of chronic/persistent Lyme being ignored and dismissed, much like the growing number of the patients that have suffered and continue to suffer from these persistent and chronic forms of disease.
My doctors couldn’t recognize Lyme
Prior to illness, I was a fully functional, active, happy and productive member of society. I was asymptomatic and undiagnosed at the time of my children’s births. When I became noticeably ill after the birth of my second child, our lives changed dramatically. I spent 7 1/2 years seeking diagnosis for a progressively debilitating illness for which none of my doctors had any experience to diagnose or treat.
Worse than that, the potential for Lyme disease as a diagnosis was completely dismissed because I resided in a “low incidence” state that repeated the mantra “you can’t have Lyme, Lyme doesn’t exist here.”
Regardless of the fact that I had been born and raised in an endemic region, traveled and recreated in other endemic regions, and worked in a high risk profession as both a wildlife biologist and wildland firefighter, I was denied access to testing for three years once Lyme disease became a diagnostic question initiated by me. I was denied access to testing and care because physicians relied on the incomplete and biased information provided on the CDC webpage.
My life and the lives of my children and husband deteriorated due to these chronic/persistent infections (Lyme, Babesia, anaplasmosis, tick-borne relapsing fever) that had been undiagnosed and untreated in all of us for years. We were confused by multiple relapsing medical issues for my husband and both of our children, without knowing the root cause.
Adequate resources and accurate information regarding these diseases were not available to us nor to any of the physicians that we sought care with. Due to abnormalities in my blood work, I suspected anaplasmosis. When I asked, my primary care physician had never even heard of it. When given the opportunity, I eventually tested positive for anaplasmosis through multiple labs.
ER docs dismiss “classic” symptoms
My son was misdiagnosed at an ER visit for which he displayed classic symptoms of tick-borne relapsing fever, the same ER that dismissed yet another young person in our community with the same illness. How are physicians to diagnose diseases for which they have no education nor knowledge of? Improved physician education is needed for both acute and chronic/persistent tick-borne infections and conditions.
Had I not become completely debilitated and continued to advocate for myself and my family, we may never have gotten properly diagnosed. I was a healthy individual without even a primary care physician prior to the onset of illness. I had only a OB/GYN for prenatal care and the birth of my children.
Once symptoms developed, I then had consults with almost every “specialist” imaginable, was subjected to various non-telling procedures and exams, too numerous to recount, all the time displaying many of the “classic” Lyme disease symptoms.
Not a single physician considered Lyme in the differential diagnosis. I was ridiculed by physicians and told falsehoods about the disease when it was finally on my radar to inquire. Both children followed suit, with no diagnosis and no explanation for the bizarre symptoms from which they suffered.
I lost my career as a federally employed wildlife biologist because I became too sick to work, my children have struggled for years with school due to repeated and extended illness that impacted their ability both to learn and to attend classes. It impacted their ability to participate in “normal” childhood activities, sports, parties, extracurricular activities and friendships.
Too many birthdays spent in bed, holidays skipped, trips cancelled, friendships lost. No child should lose their childhood due to unrecognized, persistent tick-borne diseases. My son is now enrolled online to have any access to his education, as the schools were unable/unwilling to accommodate to the extent needed for him to succeed.
Financial and emotional devastation
We have been devastated physically, financially, socially, emotionally. Loss of income and mountains of medical bills and travel expenses to access doctors have devoured our financial resources. No one should have to be buried in debt for access to care for infection with the most common vector-borne disease in the US, regardless of where they live in the country.
Our marriage has been tested beyond a breaking point multiple times, something that many families/couples with Lyme cannot withstand. Chronic and persistent disease breaks marriages and families apart.
Treatment has been aggressive, with each of us responding to various degrees with different combinations of antibiotic over different and extended time frames. We had to travel thousands of miles to seek proper diagnosis and treatment for diseases that physicians in our state knew nothing about or worse, denied the existence of. Improvements for each of us came only with aggressive and extended combination antibiotic treatment. For years, every time antibiotics were withdrawn, illness would relapse. Only after the new treatment with disulfiram, have I been able to maintain the gains in my health with any lasting success.
What now?
Am I out of the woods? Will my children ever be out of the woods? How can we ever know without the benefit of reliable direct testing methods needed to assess status for the multiple infections that ravaged each of our bodies and minds?
You must address persistent infection and chronic disease. A growing number of researchers have demonstrated that persistent bacteria exist in previously treated animals as well as humans.
This is the reason that the TBDWG was established. This year, the panel has failed to acknowledge the mothers, fathers, and children whose lives have been derailed and lost. The Lyme community has been ignored by the government and the medical system for over 40 years. You must do better!
Monica White co-founded the Colorado Tick-Borne Disease Awareness Association. She has served on several governmental panels and subcommittees related to tick-borne diseases.
The next meeting of the Tick-Borne Disease Working Group will be held on two non-consecutive days, Sept. 15 and 22. Click here for more information about how you can watch the online proceedings.
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**Comment**
The Tick-borne Disease Working Group is nothing more than a government dog and pony show. I will eat my hat if anything substantial comes from it. The best research and help has come from independent sources – often funded by Lyme patients who seriously want answers and don’t care if they fit the accepted narrative.
Mainstream Lyme research is dominated by The Cabal: https://madisonarealymesupportgroup.com/2017/01/13/lyme-science-owned-by-good-ol-boys/
Investigative journalist, Kris Newby, revealed years ago in the documentary “Under Our Skin,” that a large majority of those on the Lyme disease “Guideline” panel have financial conflicts of interest and own patents on test kits, vaccines, and other metabolomics. Meanwhile they are making public health policy. She recently did another eye-opening interview where she again points out that The Cabal are interconnected cronies that protect each other. Research funding for all things tick-borne related is scanty, with fierce competition. Anyone not parroting the accepted narrative doesn’t get funding: https://madisonarealymesupportgroup.com/2020/09/16/48473/
Also, Dr. Wittkowski revealed recently that funding for research, starting around the discovery of Lyme, switched from being independently obtained to being heavy reliant upon government grants. Dr. Fauci is the gatekeeper to this money pot. He too owns numerous patents that he profits financially from.
There is currently an investigation into our government’s role in tick experimentation and bioweaponization. Anyone see why our ‘authorities’ might not come clean and why there just might be a designated crew to squash independent thinking that questions the accepted narrative?
