This webpage displays the written comments received by the Tick-Borne Disease Working Group for the September 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.
Anonymous 1
I appreciate this opportunity to share my recent, dire experience with tick-borne illness. I send this with hope for improvements in continued training for physicians and also diagnosis and treatment information for one of the most deadly tick-borne illnesses: Rocky Mountain Spotted Fever. I live in central North Carolina, in the shadow of two nationally known medical research institutions, with a strong concentration of medical professionals in my area, and I still had to fight for my life in order for my RMSF to be recognized and treated. I am an example of how, even in a highly educated and medically savvy community, diagnosing and treating tick-borne illness is not effectively occurring.
This spring, while establishing a new garden at my home, I sustained 6 brief tick bites over the course of 10 weeks. After increasing malaise and loss of appetite, I finally realized over Memorial Day weekend that I needed to brave the pandemic to seek medical care. I went to my PCP with my 6 ticks taped to post-it notes and asked for Doxycycline, as I suspected a tick-borne illness. He said he needed blood work first, ran a CMP and CBC (which showed nothing but a low WBC count), wrote in my chart that it was most likely anxiety, and reported back that the labs all looked good.
Meanwhile, I was feeling worse, now bedridden, and my Endocrinologist urged me to go back to the PCP for an "exhaustive search for infection," because it was evident from my Type 1 diabetes blood glucose data that I had an infection.
The PCP tried to put me off to another day, but I felt so ill, I insisted labs be drawn immediately. Two days later, I felt absolutely terrible and called the PCP to beg again for antibiotics. He said my lab work had not yet returned, so we must wait. Two days after that, completely distraught, I told my husband I felt like I was dying and no one will help me. (It seemed foolhardy to go to the ER with only non-specific symptoms in the middle of the COVID crisis.) My husband got me in touch with my Well Woman provider, a Certified Nurse Midwife (CNM), who was aghast that I'd had 6 tick bites and wasn't put on Doxycycline immediately. So, after calling a colleague in Pennsylvania for help with the correct dosage, she prescribed it -- thereby saving my life. (The fact that she had to reach out to a provider in another state is evidence of the lack of support for handling tick-borne illness in North Carolina.)
Five days later (3.5 weeks after I'd started feeling sick, and 2.5 weeks after I had originally sought treatment for tick-borne illness), the PCP's office called me midday to inform me that my lab results had come back the day before, I had “a very high RMSF titer" (1:256), and I should go pick up an Rx for Doxycycline later that afternoon. If I had waited for this diagnosis, or the CNM was not willing to step in to bridge this medical care failure, I might not be writing you this testimony today.
Everything I read online says RMSF has a 50% fatality rate after Day 8. I had been feeling sick for 15 days before finally receiving access to Doxycycline. I barely escaped this experience with my life! How did my RMSF diagnosis get so botched? I never had any of the common symptoms indicating RMSF: no fever, chills, rash, headache, GI distress, muscle aches, nor edema. My only 2 symptoms were severe malaise and loss of appetite (resulting in a 10 lbs. weight loss before the ordeal was over).
Physicians need to know that RMSF can present this way. They need to know that a patient doesn't have to have a fever or rash to be suffering from RMSF.
Further testing done by a physician specializing in tick-borne illnesses, showed that I had the Rickettsia rickettsii infection, specifically. So it's not like I had a different Rickettsia illness. I had the real deal, RMSF, and it was almost missed except for my own persistence and a CNM who cared. Physicians need continuing education that treatment should not be withheld pending lab confirmation in the case of tick-borne illnesses!
In addition to an avoidable delay in treatment, I experienced an attempt of stopping treatment prematurely:
The PCP only prescribed 10 days of Doxy and was completely baffled that I did not bounce back to health within that time frame. My CNM had prescribed 14 days of Doxy, and on Day 12, Urgent Care sent me to the ER with symptoms of "air hunger" and a heart rate in the high 90's (while mine is normally in the low 70's). After a chest x-ray and EKG, the ER doctor said I needed to continue the Doxy for another 14-day course (28 days total). He, himself, had had RMSF and needed 28 days of Doxy. My mother-in-law had RMSF 15 years ago and needed 28 days of Doxy. My nextdoor neighbor had RMSF a decade ago and needed 35 days of Doxy. Like these others, I finally felt in recovery after 28-days of Doxy. The treatment information I received from both the PCP and websites (including CDC) was very misleading: It can take antibiotics more than three times as long as the currently posted "7-10 day" recommendation leads one to believe. Believing that I should already be well, my PCP would not extend the prescription, but my CNM did, fortunately. With the current push for physicians to limit antibiotic duration in general, such efforts should not be applied to RMSF!
RMSF is too dangerous, and too easily treatable a tick-borne illness, to have such diagnosis & treatment misses. Physicians & websites need updating with more current RMSF information, including 1) awareness that RMSF can present without any fever or rash, 2) reminders to not delay treatment pending lab results when tick illness is suspected, and 3) it is not uncommon for RMSF to need more than one round of Doxycycline for recovery.
Thank you for taking my experience to heart, while completing your committee's responsibilities. Tick-borne illnesses in the Southeastern United States need more attention from this Working Group, especially those most prevalent in the South, such as RMSF / rickettsia, ehrlichiosis, STARI, and alpha-gal.
Anonymous 2
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 TBDWG 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.
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, travelled 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 3 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 Anaplasmosis. When given the opportunity, I eventually tested positive for Anaplasmosis through multiple labs. 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 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 TBD INFECTIONS/CONDITIONS!
Had I not become completely debilitated and continued to advocate for myself and my family, we may never have gotten proper diagnosis for myself nor my family. 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 TBDS. 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.
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 can not 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, everytime 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.
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! Research from 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, and the panel this year is failing to acknowledge this population of individuals; mothers, fathers and children whose lives have been derailed and lost; a community that is being ignored by the government and the medical system, that has been ignored for over 40 years. You must do better!
Poncha Springs, CO
Anonymous 3
What needs to be done before CDC acknowledges the existence of chronic/persistent Lyme disease? How much research needs to be conducted? How many papers need to be written? How many examples, like mine below, need to occur? And worse of all, how many people need to suffer with chronic Lyme because the traditional medical community is following CDC out-of-date guidelines?
Because of CDC’s antiquated guidelines, I was denied long term disability. The insurance provider put Lyme disease on trial rather than evaluating my disability. The doctor hired by the insurance provider for the initial review of my case said that since I had been treated with antibiotics, Lyme disease was no longer an issue. One of the doctors hired for the appeal felt similarly and believed persistent/chronic Lyme did not exist. Another doctor said I must be malingering when the results of a neuro test were not what he expected. He did not even consider the possibility of chronic Lyme. No one took into account that I had been essentially bed-ridden for over a year, too weak and fatigued and unsteady to stand for longer than five minutes.
I was a highly respected instructor of Italian at a university until my last Lyme relapse. I had to stop teaching, a profession that I loved. Now I have been house-bound for over five years and do not know from day-to-day how I will feel. Will I be strong enough to walk around upstairs for five minutes or take my plate downstairs after eating in bed the meal that my husband prepared for me, before going back to bed to rest? Is today the day that I have severe tremors and a feeling as if my brain is on fire? Will my light, sound, and chemical sensitivity cause me to react? The following timeline is probably the best way to explain my four chronic Lyme relapses and how I have gotten to where I am today:
TIMELINE
November 1996 - Officially diagnosed with Lyme (tested positive for Lyme and Ehrlichiosis after having symptoms (dizziness, muscle pain, unsteadiness, nausea, cognitive difficulties, etc.) for the prior four years. During that time I had been examined by many specialists (a rheumatologist, a neurologist, a cardiologist, a gastroenterologist, a vascular disease doctor, and an ENT) and my primary care doctor and was told that my symptoms were all in my head. The traditional medical community believes if it cannot be tested for, you must be imagining it. This is the illogical reasoning that the Lyme sufferer faces. I was treated with eight weeks of Doxycycline and symptoms improved but did not completely subside. I was able to return to work.
Fall, 1997 – (RELAPSE #1) Tested positive for Lyme disease again, but doctor said this was due to previous illness. I had the same symptoms as before, but more severe. I was bedridden for three months and had to resign from teaching. Given a variety of medications, but no antibiotics. After three months of hearing I was depressed and getting no better, I was treated by a chiropractor with supplements and adjustments, and improved.
Fall, 2000 - I returned to teaching at a reduced load. (RELAPSE #2) I became extremely fatigued and went to a LLMD, who retested me for Lyme. I once again tested positive for Lyme and Ehrlichiosis. November 2000 started to take Doxy (3 100mg caps 3 times per day). Symptoms worsened so it was reduced to 1 cap 3 times per day. December 2000 added Diflucan 100mg tab 2 times per day. Then in February 2001 added Flagyl 1 tab 2 times per day. I was able to teach full time by Fall,2001. I continued with same protocol for two years and then was able to stop.
Summer, 2008 - I continued to teach full time until my next relapse in Summer, 2008 (RELAPSE #3). I had been well for six years and did not consider I had Lyme again. I was treated for an inner ear problem, but by Fall, 2008 my symptoms worsened, and I had to reduce my workload. Unfortunately, the Lyme literate doctor I had seen previously had passed away. I found another LLMD and was treated with 100mg per day fluconazole and symptoms improved slightly.
Fall, 2009 - I tested positive for Lyme, Ehrlichiosis, Rocky Mountain spotted fever and q fever, but still was able to teach a full load. Winter, 2009 added Doxy. Stopped taking medication after about a year.
Fall, 2013 – (RELAPSE #4) I began to feel symptoms returning but was still able to teach. Beginning of 2014, symptoms worsened to where I had to reduce my teaching workload from three to two classes for the spring semester. Even with the reduction, I had a hard time coping. For the classes I taught, I needed to remain seated most of the time. When I attempted to write on the blackboard, I got lightheaded and had difficulty formulating my thoughts.
March 2014 - I saw a Lyme doctor and tested positive for Lyme and Ehrlichiosis. I started taking antibiotics in April 2014, and showed some improvement, but in August my symptoms got worse and I was required to take a Family Medical Leave Act (FMLA) leave of absence from September through December 2014. My doctor in completing the form required for the FMLA stated, “The patient cannot teach at this time. She has been diagnosed with Chronic Lyme Disease and Ehrlichiosis (another tickborne disease). Her symptoms include, but are not limited to chronic fatigue, stiff joints, muscle pain and cramping, dizziness, difficulty walking, IBS, blurry vision, TMJ, and disturbed sleep patterns. Her cognitive symptoms include confusion, difficulty thinking and concentrating. Due to recent medication adjustments her symptoms have become much worse.” Some of my symptoms got better (stiff joints and muscle pain), but there were disturbing new ones. Besides unpredictable imbalance and dizzy spells, the top and back of my head were getting hot. I felt as if my brain was being affected. This was not all the time, but enough to be concerning.
February 2015 - I was concerned about my remaining symptoms and my strength, but I wanted to teach again so I returned to work. I lasted five days. All my symptoms came back, even more severe than what they had been before. The next couple of months my symptoms got progressively worse. By May I had become light and sound sensitive and unable to read a book or a computer screen or watch TV without becoming nauseous, light-headed and shaky. When talking to someone on the telephone or if someone came to visit, I had the same reaction. I could not walk without holding onto something or someone for balance.
March 2015 – I met with infectious disease doctor who prescribed Amoxicillin, Probenecid, and Carvedilol. A battery of conventional tests gave no direction. For the Lyme patient this is often the case. There may not be any objective findings supporting the symptoms. Doctor recommended I see integrative medicine doctor.
June 2015 - I went to the [redacted] Integrative Medicine (Jefferson Hospital) still trying to determine why I felt the way I did. In August with the doctor’s permission, I stopped taking antibiotics since they were not helping, and it seemed I was getting worse. After numerous tests at Jefferson it was determined that I had a GI tract issue. My body was not absorbing the nutrients from the food that I ate. This was probably the reason I had lost thirty-seven pounds since February.
I focused on healing my gut. The doctor wanted me to first get my gut flora balanced before addressing any other issues. Unfortunately, due to my body and immune system being so debilitated, his suggested IV treatment caused my symptoms to be exacerbated.
Since traditional medicine had failed me, I decided to continue this unconventional medicine approach and worked with a chiropractor, nutritionist, massage therapist and acupuncturist. I felt temporary relief after a session. In my current condition, care must be provided in our home which is now impossible because of the pandemic. I also followed the metabolic program of a certified functional medicine practitioner and had some improvement, but nothing permanent.
Each day I continue to battle extremely debilitating fatigue; dizziness; unsteadiness; pain; memory loss; sound, chemical and light sensitivity; cognitive problems; frequent tremors; and headaches. My compromised immune system and my weakened state have left me susceptible to other complications. Before I can focus on my Lyme disease (and Bartonella which is suspected because of my brain issues), I need to continue to work on my gut. Because of my sensitivity, I can make only micro introductions of new medication and treatments.
CDC and the medical community need to be educated about Lyme disease, especially chronic/persistent Lyme, so there will not be a repeat of my case, so Lyme sufferers will not have to travel hundreds of miles seeking treatment, so Lyme treatment will be covered by insurance, so doctors treating Lyme patients will not fear losing their license. It is time to stop the bickering, to bury egos and to forget about financial benefits. Please focus on what needs to be done to put an end to this devastating disease that reduces the quality of life for so many individuals.
Delaware
Johanna
Topic: persistent/chronic Lyme Disease
In early 1988, local and state representatives in Suffolk County, New York, mailed information to constituents concerning the newly discovered cause of Lyme Disease. I was one of those residents who received the information. Having a BS degree in health education from SUNY Cortland, I took the information seriously. Despite being careful, I was bitten by ticks that summer. They were everywhere! I did not have the typical bulls-eye rash that was thought to be the prime indicator of the Lyme infection at the time. A few years later, after I had moved to Charlotte, NC, I realized from literature given to me by a rheumatologist, that what had appeared to be a bruise (that had no pain associated with it) on my lower leg, just above the ankle, in the summer of 1988 was in fact the site of the tick bite. I developed flu-like symptoms of fever, headache, body aches, joint pain and fatigue, but no stomach or intestinal distresses. We were in the process of moving from Centereach, NY (Suffolk County) to Charlotte, NC with 4 young children. I felt a little better but was very fatigued and achy for weeks. I also had a mild case of bronchitis for weeks. It would come and go. Finally, the activities surrounding Christmas with 4 young children caused me to develop full-blown bronchitis. The dr put me on antibiotics and I improved. But the advent of much warmer weather in May caused the flu-like symptoms and bronchitis to reappear along with fatigue, dull headaches, low grade fever, “brain fog”, joint pain and muscle aches that would constantly switch from limb to limb and back, arthritis pain in my neck and back, aching in some lymph nodes, and heart palpitations. The dr in Charlotte, NC had no idea what was causing all of these strange symptoms and told me I was a “medical puzzle.” Over the next couple of years, I suffered all of these symptoms, including arthritis type symptoms that caused pain in even lifting a tea cup. My children had to accompany me to the grocery store to reach the items on the shelf and place them in the cart (which I had to lean on to walk around the store), as this caused much pain. In 1991 or 1992 we were visiting family and friends back in Suffolk County, NY. Some of them had also suffered from Lyme Disease, so they got me an appointment with their family dr who also had suffered from it. He determined that I had the Lyme and prescribed IV Rocehephin and then physical therapy to get me moving easier again. This was to be done by my primary care dr in Charlotte, NC. After the treatment, I felt much better, but the Lyme symptoms returned again a few months after the IV antibiotics. I was given many months of oral doxycycline. Again I improved greatly and dramatically. I had no symptoms other than some occasional mild arthritis symptoms. Then four years later, almost to the day, all the symptoms of the Lyme Disease returned with a vengeance, like an explosion in my body. Again I had IV Rocephin, followed by supprax this time. I took Supprax every day for many, many months. Then doxycyline again for more than a year.
Over the years since then, I basically have led a normal life, but there have been times of flare-ups of the Lyme. I hadn’t had any symptoms in years again until Aug of 2019. The flare-up was minimal, being self treated with lots of rest and natural supplements like oregano oil. Every few months it would try to flare-up. Just this week I have had more of a flare-up than I’ve had in years with joint pain, dull headache, “brain fog”, fatigue and muscle pain and aching in some lymph nodes. This has been cyclic for over 30 years now. Yes, persistent or chronic Lyme Disease is very real, despite what some doctors try to tell me. I have lived with it and been limited by it, knowing that anytime I get over tired or catch a virus or simple cold, that I have to be extra careful to have more rest than normal so the Lyme Disease doesn’t flare-up again.
Please find treatments and cures for this chronic/persistent Lyme Disease, and please inform doctors that this is a very real condition.
Thank you,
Johanna
Travelers Rest, SC
Cindy Amaral
I believe I was originally infected at the age of 18. By the time I was diagnosed at the age of 40, I had seen multiple doctors for multiple symptoms which would come and go, wax and wane. Prior to my diagnosis, I didn't know what side of the road to drive on or what a stop sign meant. My symptoms were many and included: severe brain fog, short term memory loss, confusion, word finding problems, insomnia, anxiety, depression, unusually long panic attacks, muscle, joint and nerve pain, swollen joints, horrible neck pain, inability to walk at times due to swollen knees or ankles, fatigue, extreme weakness, air hunger, perfuse sweating, shortness of breath, heart palpitations, dizziness, fainting, vomiting, neuropathy, twitching through out my body, decreased vision, ear ringing, tremors...... I took antibiotics for 10 years, stopped and took herbals for six years, and now I am once again taking antibiotics because of increased symptoms and worsening health. I am so much better than I was, but still so debilitated by Lyme disease, Babesia, Ehrlichiosis, and Bartonella...... At 56 years of age, I have spent all my retirement money/401k on treatment. I had to give up my career in 2008 as a ophthalmology practice manager. I am currently on disability. Lyme disease and co infections have taken my career, health, and financial security. Think this can't happen to you? Lyme disease turns chronic when treatment doesn't start within a month of the bite. This happens to so many people! Too many chronic Lyme patients have committed suicide because of all the adversity they must face. We are caught in the middle between two opposing sides, battling over if chronic Lyme even exists, and how to treat it! Please stop wasting time!! Both sides must come together in a unified front to win this war so many of us are facing. I am counting on you to figure this out! We must find a cure for chronic Lyme disease and co-infections!
Lucy Barnes
In 2018, Dr. Raphael Stricker, et. al. published an excellent study defining and outlining CHRONIC Lyme disease. Tables with some of the most prevalent signs and symptoms found in untreated Lyme patients, and patients with limited treatment, were included. The tables clearly document a list of well-defined cardiac, musculoskeletal and neurologic signs and symptoms. To avoid any confusion or controversy, all patients included in Stricker’s study had persistent Lyme (Bb) infection documented by culture, PCR and/or microscopy.
In addition to several decades of clinical experience treating chronically ill Lyme patients and those results coming together to support this definition, there currently exists over 700 peer-reviewed journal studies also clarifying and supporting the existence of chronic Lyme disease.
Proving chronic Lyme disease exists and providing its official definition for the medical, scientific and patient communities will be of immense help for the medical community. The definition alone also sincerely questions the protocols that some of the members of the Infectious Diseases Society of America's (IDSA) have been recommending, i.e. that combined with faulty testing, short-term and cost-effective treatment protocols are effective in curing this spirochetal disease. It also confirms the fact that if the same protocols continued to be utilized, it will lead to more chronic illness and cause immeasurable harm to patients as the disease progresses.
Unfortunately, for many self-serving reasons, IDSA members continue to either ignore or speak out against reports from patients world wide who remain ill. The IDSA also denies the scientific studies that continue to prove them wrong, and have even gone to such lengths as to try to discredit these studies and/or their authors. Even with all of the evidence provided over the years that chronic Lyme exists, IDSA members routinely dismiss claims of continuing, relapsing and worsening symptoms and fight to keep chronic Lyme disease out of the spotlight.
This Must Stop!
When the IDSA guideline panel, and subsequently the TBDWG members, are allowed to deny the existence of chronic Lyme disease or ignore the studies calling for additional scientific and medical intervention, they become the main contributing factors that creates immense, and often life-long suffering and disability for patients. Chronic Lyme disease MUST be outlined in detail and strongly represented in the report to Congress in order to bring attention to this previously ignored, disabling medical condition.
If chronic Lyme disease continues to be ignored, the TBDWG will be held morally accountable and will be held legally accountable for the path of destruction it causes. Any TBDWG panel member voting for the lessening or exclusion of chronic illness in its reports to Congress could and should be investigated and charged for knowingly excluding this overwhelming, vital information. In fact, some of the TBDWG panel members and potential members with their corrupt conclusions have already been investigated and are currently being sued for such crimes.
As an example, following Connecticut Attorney General (currently US Senator) Richard Blumenthal's lengthy investigation into the IDSA's guideline practices, he reported on May 1, 2008:
"The IDSA's 2006 Lyme disease guideline panel undercut its credibility by allowing individuals with financial interests -- in drug companies, Lyme disease diagnostic tests, patents and consulting arrangements with insurance companies -- to exclude divergent medical evidence and opinion." https://web.archive.org/web/20170319133146/http://www.ct.gov/ag/cwp/view.asp?a=2795&q=414284
IDSA Lyme Disease Guideline Panel Members- Gary P. Wormser, Raymond J. Dattwyler, Eugene D. Shapiro, John J. Halperin, Allen C. Steere, Mark S. Klempner, Peter J. Krause, Johan S. Bakken, Franc Strle, Gerold Stanek, Linda Bockenstedt, Durland Fish, J. Stephen Dumler, and Robert B. Nadelman
Moving Ahead
The TBDWG was established to help, not hinder progress. Its mission is to report- truthfully- to Congress so people who suffer from chronic Lyme can receive the help they need to recover.
We know what CHRONIC Lyme disease is, we know what causes it, and we know and have solidly established the need for addressing it. Chronic Lyme disease must be the main focus of this current TBDWG report, and all reports that follow.
Quote from Stricker, et. al. on CHRONIC Lyme Disease…
"According to this definition, CLD is a multisystem illness with diverse musculoskeletal, neuropsychiatric and/or cardiovascular manifestations that result from ongoing infection with pathogenic members of the Borrelia spirochete complex often associated with other tickborne disease (TBD) pathogens.
To qualify for the diagnosis of CLD, patients must have Lyme- compatible symptoms and signs that are either consistently or variably present for six or more months. Two subcategories of CLD include untreated chronic Lyme disease (CLD-U) and chronic Lyme disease following a limited course of antibiotic treatment (CLD-T)."
Chronic Lyme Disease: A Working Case Definition
Stricker R.B., Fesler M.F. Chronic Lyme Disease: A Working Case Definition. Am. J. Infect. Dis. 2018;14:1–14. doi: 10.3844/ajidsp.2018.1.44.
https://thescipub.com/pdf/10.3844/ajidsp.2018.1.44
Lucy Barnes, Director
Lyme Disease Education and Support Groups of Maryland
Katrina Buskirk
Greetings, I am writing in to voice my experience as a person living with late stage, persistent/chronic Lyme. I was diagnosed in 2017 after years of unexplained health problems that ultimately resulted in my admission to the hospital for symptoms of CHF at 36. After my discharge, I found a PCP who finally agreed to test me, despite no prior report of a bullseye rash. My tests showed that I had elevated IGG and IGM levels indicating both a long term immune response as well as an acute presentation of symptoms. Not surprisingly, no other provider I had expressed my symptoms of fatigue, headaches, joint pain, brain fog, photophobia, dizziness, etc had ever suggested it could potentially be something easily treated with antibiotics (had it been caught in time, which it wasn't). Instead, my symptoms were dismissed as psychosomatic or just normal aspects of aging.
Fast forward 3 years from diagnosis. I have tried multiple treatments ranging from various antibiotics and herbals to HBOT and diet/lifestyle modifications in order to mitigate my ongoing symptoms, with mixed sucess. It's been hard. This disease has crept in and altered literally every aspect of my life. To the end that I hardly had to make any further adjustments to the "new normal" of the covid pandemic; I was already homebound, shopping mostly online or at most 1x a week, and being hyper-vigilant of personal space and potential communicable disease prevention actions such as hygiene. That's still an improvement from when I was at my sickest, though, considering I am mostly homebound, need help with multiple ADL's, am on constant home O2, sleep with a bi-pap, and can no longer tolerate enough activity to work, isn't necessarily saying much, considering I had several jobs in my 20s (that I loved, btw) that often required 60-70 hr weeks and 12 hr days. I am often angry thinking of what may have been different if the providers I saw early on had considered Lyme as part of the standard differential for those generalized, but life altering symptoms I suffer(ed) from. I now have the added diagnosis of autoimmune polyarthritic arthropathy. Essentially my body attacks it's own tissues in multiple joints. I've been told it has similarities to RA and MS, but it's difficult trying to explain that to non-medical contacts who don't understand how I can still be so sick from something they think (thanks to a disingenuous and ill-informed media) can be "cured" with a 2 week course of antibiotics. All while trying to learn everything I can about healing as much as I can from the long term damage that was done, and is still happening, albeit slower and mostly in my joints instead of my heart.
Because the research funding for chronic/persistent and late stage Lyme has been almost nothing in terms of public disease funding, citizens like me suffer. When Drs are intentionally misled by published guidelines to not think this disease is prevalent in the interest of insurance companies trying to avoid paying claims, or the message that the condition doesn't exist to begin with in order to cover for the mistakes or ommissions of prior researchers, or worse yet, to cover up potential cold war era bioweapon research that escaped containment, citizens like me suffer greatly.
Please consider keeping, and adding to language in the recommendations that address patients like me. In the "richest country in the world" patients shouldn't suffer from taxpayer funded agencies discrediting things that are real, and not nearly as rare as the documentation tries to suggest. I don't know if I will ever regain the ability to lead a so-called "normal" life. However if my story can lead to improvements in the published recommendations that prevents the future suffering of others, then there is at least that much value in sharing my story.
Klamath Falls, Oregon
Gretchen Crowe
I would like to go on the public record for the final Tick-Borne Disease Working Group meeting/s, who hopefully can amplify my message. I want to encourage each of you, as members, citizens, people committed to our country's public health and fighting vector-borne pathogens, and those of you who have taken the Hippocratic Oath to please truly read and absorb my statement. I am speaking as a former executive-track professional in pseudo-governmental and medical non-profits turned full-time Lyme patient. I can only begin to tell you how sick and disabled I am from this; I call having a good day if I'm capable of getting out of bed for, say, three hours. What's worse? There are so many patients like me.
I have the hotly debated, "Chronic Lyme Disease." Personally, I call it late-stage Lyme, since I have the characteristic white matter lesions, encephalopathy, and pain syndromes associated with neuroborreliosis, but whatever the name, I have the constitutional symptom clusters and neurological damage (including cardiac) typical of other "Lyme" patients like me. Honestly, I don't care what you call it, or if you call it PTLDS. I don't have an agenda for a name; I do, however, have an agenda to get recognition for those of us with Lyme disease as a long-term, debilitating disease and to stand up and say, we certainly DO exist! Not only do we exist, we are uniquely denied medical care and access for help with this disease.
I will tell you, the system is broken for those of us in this extended illness. By the time it gets to everyday doctors treating us patients, we truly have no help. I am beyond tired of having doctors be afraid of using the word Lyme and no access to adequate treatment at all after the arbitrary 30 days of treatment guidelines. The systemic ignoring, disregard, and chiding I have experienced over and over again from our medical system about my health in general, specifically because of Lyme disease and other tick-borne illnesses, is barbaric and not acceptable.
I don't hesitate to say the neglect and disbelief of my 31 year quest to get answers of why I was progressively sicker and disabled, went against so many of my practioners' Hippocratic Oaths, whether intentional or not, over and over again. I went from not being believed about pain and other subjective symptoms to nearly dying over the past three decades, leaving me with a lowest-possible baseline of daily severe pain and illness. Staff in doctors' offices all wince at how frail and sick I am, yet the doctors they support will often not look at any aspects of me because as one specialist recently said, "I can't even say the name of that disease. I am not allowed to get in that political storm. I'm going to have to refer you somewhere else and hope they can run some tests for you."
Your political battle to deny that we patients exist has scared the pants off regular doctors and now they're ignoring us all together. This type of avoidance has happened more times than not as I search for answers to my lack of health. In January, I even had a primary walk out of the appointment without talking to me when I showed her extensive labs from a Lyme Literate MD (ILADS trained and also medical school professor) without explanation. I received a call from their clinic's CFO the next day that I was fired as a patient and needed to go elsewhere for care. When I pushed why, she finally admitted, "we don't treat Lyme patients here."
Is this the quality of healthcare you, as a working committee with leverage in these diseases, are comfortable with? Does this follow the Hippocratic Oath when the fear of the politics of the disease blocks access to doctors actually helping us with anything at all? You haven't had enough NIH or private research funding to even stand on the current CDC recommendations, much less bully the system to ignore us all together. We do exist. We are not crazy. We live in a debilitating, untreated state, unless we are lucky enough to be able to pay and access the second medical society regarding TBD's, we all know as ILADS. ILADS treatment saved my life and got me better than I had ever been in the years before. I can't afford it now, because they can't take insurance because they're hunted down as non-protocol following doctors by medical boards. Well, they DO follow guidelines, those of ILADS, just not yours, and they truly help us patients. But, we can't access their excellent care in mainstream, corporate medicine. There, we get no treatment at all.
I know in committees and in theory, we are making positive strides, but I cannot remind you enough that this is NOT how the intersection between practitioners and patients works in the real world. We are gaslighted and left to physically and mentally suffer.
And, in all of my doctors visits, I simply look for medical help as a systemically sick person that is going downhill fast. I always tell my doctors to please look at what they are trained to see, outside my documented medical history, and could they help elucidate my severe case. But, any more, too many doctors just are scared to even treat me for something outside of Lyme, just by having the Lyme labwork included. This leaves me and others to be passed off ad infinitum to the next referral, each taking 2-15 months, as a way to avoid us. That's my current trajectory with my doctors. This system has to change.
My case can be traced back to a summer camp letter I wrote home when I was 11 years old in MN that I was sick with a solid rash in my groin, fever, spine pain, and extreme fatigue and malaise. But, I was a child. I couldn't explain it that well back then, but that gives no excuse that no one looked at TBD's (tick-borne diseases) even though I was kept in the nurse's quarters for nearly a week and had many doctor visits after I went home that entire year, which has bled into a lifetime. Fast forward to my diagnosis in 2016 with a CDC positive test I had to beg my doctor to run, since "Lyme disease doesn't exist in Colorado." It left me confused and without any doctor willing to help me. I was told by my primary and provider's business office, I didn't have Lyme, despite the lab results because it's self-limiting and I wouldn't still have it by then. Please note, I'm skipping choice commentary of the 84 doctors that saw me for these same symptoms between my infection at eleven and my diagnosis at forty two. The take-away is that I wasn't believed over and over again, leaving this spirochete to unleash its havoc on me over three decades. Just like in the previous Tick-Borne Working Group meeting where the presentation of Lyme studies was interrupted with the scribbling over the virtual screen, medical doctors have written me off before they even see me.
So, I ask each of you. Why is this system failing us? Dr. Shapiro, who treats us PTLDS patients? I have found no one. My symptoms which were subjective have now etched their damage in my bone marrow with plasma cell dyscrasia, crumbling spine and subsequent pinched nerves and stenosis, cardiac sinus node issues, dysautonomias and POTS, mast cell issues, sensitivities to everything, white matter lesions, constant tremors, inability to walk more than a block, liver dysfunction, migrating pain, neuropathies, inability to sleep, or the cognitive issues.
I ask you all, have you done enough to sleep well at night for patients like me? Because chalking up the debilitating symptoms to catch phrases like, "aches and pains of everyday living," is a slap in the face to those who struggle just to make it through our days.
Thank you.
Jessica Devine
Many things have happened to me in the last 3 years since I wrote my story. I wanted to share my lyme experiance I have written below.
"Ok, so I have intended to write this for almost 2 years now. Honestly, I’ve been too busy since diagnosis, literally saving my life. So, here I am, actually doing it.
This is my story of how one tiny tick the size of a poppy seed literally ruined my life. I was at the top of the world, I was happily married, 2 incredible kids, and a thriving business and had just published a book helping people get healthy. I felt like things were falling into place. I was genuinely happy. Anyone that knows me, knows I was a ray of sunshine on a cloudy day and the laughter when you’re crying. Simply speaking, I brought joy because making people laugh and smile has always been my true self. It feeds me. I am also very ambitious and have always been a little outrageous in my actions, yet always positive.
Then in January 2013, my family went to rent a cabin at Shaver Lake, CA to celebrate my daughter’s birthday. I was so excited. When we arrived early evening, we quickly unpacked the van and settled in for a quick dinner. We picked our rooms and then played in the game room for hours. We were all happy to get away. We figured we would go out in nature the following day. It was dark, and I need to be able to spot Bigfoot in the light. Yes, I believe.
Anyways, I went in the bathroom to do all my skincare rituals and put on my comfy jammies. I noticed a black speck on my abdomen and went to brush it off. It didn’t brush off, I tried again. Then I had a girl moment and freaked thinking this thing is attached to me, and it was. I got grossed out, dug my fingernail into it and flicked it. Yes, I flicked the enemy that stole my life. Then I moved on, no biggie, we are in the mountains, more bugs expected.
30 minutes later as I lay in bed laughing with my husband about a comedy show that we love, I had a sweeping hot/cold sensation hit me. I voiced it explaining something didn’t feel right. It got worse within minutes. Getting scared, I stood up, and vertigo took over and I started to tremble. My husband held me and took me downstairs and laid me on the couch near the fire. I couldn’t stop shaking, what I can only describe as a seizure, my mind was effected as well. I immediately spoke out loud crying, I don’t want to die young, I have so much to live for. THIS WAS NOT LIKE ME AT ALL. I started visiting the bathroom often, no details sorry. It was like the FLU x 100. He googled trying to figure out what this might be. I had no history of anxiety and I was clearly perfectly healthy 2 hours before. I ate extremely well and exercised 5 days a week. We started thinking maybe it was altitude sickness or food poisoning or too much caffeine. None of these made any sense because Shaver isn’t that high, I always drank lots of coffee and I had eaten a bagel. I didn’t want to wake the kids and ruin my daughter’s birthday. I wanted to wait and see what happened. What happened was I laid there, my husband holding my hands concerned, shaking uncontrollably and speaking of death. I felt like I was dying. 6 hours later I finally fell asleep. I woke groggy but it was over. I proceeded to enjoy my 2 day vacation but I felt weak. The first night back, we sat down to watch one of favorite shows, halfway through, BAM, it started again, body shaking and head issues and it scared me. I now suddenly had the worse back and spine pain of my life but I had recently started a squat and push up challenge so I stopped the challenge and blamed that. I went to the doctor next day. That is when this strange abdominal pressure and red circle had already kicked in. I explained what was happening in detail. She prescribed 800 mg Ibuprofen and sent me on my way. Dismissed the red area on my abdomen. I would revisit this doctor almost weekly as these “episodes” continued and the pain was spreading. She did an x-ray and said, “Well you have Scoliosis, and this is why.” I questioned why Scoliosis, which I’ve lived with my whole life would, do this to me in an instant. She dismissed my questioning. My abdominal pain and burning sensation got worse and she sent me to a gastroenterologist. In the meantime, I scheduled myself with a scoliosis specialist. The gastroenterologist suspected ulcers and scheduled me for a throat scope procedure. I suddenly had gluten intolerance, gastritis and ulcers in my stomach and esophagus from the over use of my prescribed Ibuprofen dose it appeared. I was put on medication and strict diet. 4 months later I would be made to repeat it and include a colonoscopy to further get to the bottom of my never-ending symptoms. At this same time I saw the Scoliosis doc, who did a thorough exam and x-ray and told me Scoliosis does NOT do what I’m experiencing. He said it was something internal, organ related. Now I had proof for my primary doctor. The next time I came in, episodes now happening almost daily, her answer was Gabapentin 800 mg twice a day. By second dose, when I was out with my mom, as we were getting out of the car to buy wine, I lost my ability to stand or communicate, I looked at my Mom and communicated the best I could. She is my mom, so she knew. She rushed me to my doctor’s office, ran inside to have them check me out. They refused to come out or see me and said ER is my only choice. My Mom, utterly pissed by their lack of compassion rushed me to ER, stopping on the way to get my 5 year old. A good friend met us there to pick up my son as not to scare him. My condition make my dear friend cry. They wheel chaired me in a seizure state by this point. After a 6-8 longs hours of being in a room, the doctor came to witness. He informed me that my doctor put me on dose intended for an epileptic. He told me to never take that medication again. He guessed I had MS and that it will take a while to figure it out. Home I went, no solution. Offered muscle relaxers.
I went back to my doctor 1-2 weekly for bloodwork and increased symptoms. I kept smelling ammonia at this point. She said it’s probably anxiety and offered me antidepressants, which I refused. I was rushed there by my friend during an episode. At this point, I found another primary.
Round 2. I came in and met my new doctor, explained my life, he started some tests. At this point, I started visiting weekly due to a range of sporadic symptoms that were crazy, from knees going out, to a neck I can’t move, shoulders being locked up, low back pain worse than labor. I showed them my still existing bullseye rash on my abdomen and she offered me fungus cream. I asked, “Does that mean its ring worm?” She replied definitely NOT but it is unusual. I questioned why have I had this mark for over a year? She dismissed. I kept getting, “everything looks good in your labs” and I got my next antidepressant offering. I always defended myself, saying I’m the farthest thing from being a depressed person, I’m quite the opposite. I said I’m just concerned because I’ve always been super healthy and I can feel something spreading and I’m frustrated that you can’t figure it out. Once again, I left. Then the heart problems started, they did an EKG, you are fine, you are just a Type A personality. Once again, I left. My blood pressure kept getting really low, I would struggle to breathe at times and my heart would jump and race insanely fast. I went back…..again…… I was sent to a cardiologist.
The cardiologist put me on a 30 day monitor, stress test and bloodwork. Everything looked good, but ordered an echocardiogram to be sure. I would return several time when they finally diagnosed that I had developed POTS. I had very low BP now, and very high pulse. I went on medication.
I revisited my scoliosis doctor to seek answers again. He ran more tests, and found I had now developed Degenerative Disc Disease and bone spurs. I thought, wow, I finally got my diagnosis. WRONG….
For the next year, I saw acupuncture, chiropractors, deep tissue massages, physical therapy, cupping, taping, intense physical fitness, anything to control or try to fix the pain. I denied doing recommended steroids and epidurals, thank god, knowing what that would have done to me.
I finally went back asking for help. I was giving up. This time, my doctor sent me to do several different MRIs, cat scans, ultrasounds etc. over a 6 months period, ruling out any major issues. Blood work looked great. Heart issues worsening, dismissed as anxiety. Tremors dismissed. Guessed maybe arthritis. Referred me to a RA doctor, waited 2 months, then tested and was told it wasn’t that, back to primary. I saw many doctors during this time.
Then one day, at a restaurant celebrating a loved ones birthday, the “episode” returned, IN A RESTAURANT. How I managed to avoid a witness for that many years is beyond me. My dear friend walked me out to see if I could shake this very uneasy feeling. I felt like something was seriously wrong, my body was out of control, I was losing it. I drove myself straight to the doctor while my friend travelled close behind as I didn’t want my kids in the car. My parents met me there, sadly to witness this. I was given an EKG and offered XANAX. I was feeling defeated. I was sick of anxiety and depression being their answer instead of looking outside the box, or hell, maybe the bull’s eye rash documented in my medical records.
By July 2016, some strange sensation hit my head, it came like waves of movement, moving pressure, very alarming. I remember sitting in my kitchen, talking to my Dad, and finally mentioning it out loud. It was impossible to describe to a doctor. I begged to see a neurologist as each week the head symptoms worsened. I started calling begging almost daily that something was severely wrong. They insisted I come in again. I did, was given migraine medication. Did nothing. So I came back asking for help. They ordered a brain MRI. It came back with a few concerns but I was NORMAL. Wouldn’t refer me. So they sent me to do more physical therapy for 3 months. I continued to decline, by this time I was in bed each and every day. Not seeing my children for days as I had lost my balance and vertigo was getting worse. I was slowly not being able to speak right and I was losing my short term memory. I had lost some basic vocabulary. I was passing out. My BP would drop drastically all the time, laying down was the only way to cope. I started to pray, TO DIE. I wanted the years of torture to be done, and to stop being a burden to my family. I thought, can I do it? I thought long and hard. My friend of over 25 years had lost her son to suicide and I decided NO, I WONT AND CANT. I couldn’t hurt the people I love, so I knew dying naturally was how it would have to happen.
I finally just got my own appointment after begging the neurologist to see me as my primary wasn’t helping. She felt for me, saw my brain MRI and pointed out some things suspicious and booked me again the next week. She ran bloodwork and tests, I was fine according to those. But she could visibly see the torture I was living.
I got to the point, people I loved didn’t believe me, thought I was a hypochondriac. I want to say here and now, that my parents and sister ALWAYS did, ALWAYS. I might not have fought as long as I did, had I not had their complete faith in my sanity. I knew in my heart that there was something majorly wrong, I wasn’t crazy. I was dying and desperate. I had seen 30 different doctors by this time, had over 40 tests all showing I was fairly normal.
I returned to the neurologist and seeing my declining state and now questionable labs, she sent me to a kidney specialist. After many tests, he said I desperately needed to see an Endocrinologist. So, I did. I brought in all my labs and poured my story out. It was a long appointment. At the end, he said, “You are just depressed and need to learn how to be productive.” He said you need Ritalin for energy and these 3 antidepressants, add one each week. I left and never went back. I was there to evaluate my endocrine problem. Ridiculous.
My sister, my person, always googling and trying to help diagnose me since doctors were failing me. One day, she texted me “are you sure you don’t have Lyme disease?” (I kept that text and will forever) I replied “no I would know if I had that, they’ve tested everything.” She then pointed out that I have every symptom because she did the survey. I dismissed, well kind of, I was thinking.
That week, I joined a local support group for chronic pain sufferers as I could no longer feel isolated by no one understanding what I was trying to live with. That is where my life changed. I sat with 6 woman at an outside restaurant and listened to each of their stories. I was the new one. A friend of mine went to support me and who suffered pain so I figured it could help us both. Then it was the 4th woman’s time to talk. As I listened, something happened, I knew her story, and I lost it, I starting crying. I started interrupting her to ask questions then let her finish and I continued to cry. I looked into her eyes, and for the first time in 4 years, I saw something I recognized. I saw my soul sister, someone who I deeply understood with her talking for 10 minutes. She looked at me the same way. I am married to a man, but this is the closest I could compare to falling in love with a friend. Fate had brought two desperate people together. She told about her search and what after 20 years of searching, she had LYME DISEASE. I now knew what to do. My sister and Janice had just saved my life.
I called the next day and asked my neurologist if she would test me for Lyme disease. I knew how far primary doctors had gotten me, so I thought she may help. She sent me for labs. I waited for results as my symptoms kept getting worse. I got the call, “you aren’t CDC positive but I don’t like that these bands came up reactive.”Bingo, I may have found my answer. They started calling to get me into infectious doctors in town. 20 doctors refused to see me. Although they finally got one that accepted the referral. I called for 4 weeks asking for an appointment. They would not return my call, give me an appointment or answer my neurologist so that is when I was on my own……AGAIN.
My parents, sister and I sat in my kitchen calling every Infectious Disease doctor in town. Need I say how many? They would say one of three things “We don’t treat people with that”, “We aren’t allowed to treat people with that”, and “No we can’t see you.” Once again, I had hit another wall. We found out that there were Lyme specialists, 4 in San Francisco. I called and the waiting list were 8 to 12 weeks long. I knew with every ounce of my body and soul that I had less than a month to live. I was shutting down, dying before my children’s eyes. An angel appeared on Google, there was a specialist in Pismo, less than 3 hours away. I called crying, begging them that I am close to death and need them. They also had a waiting list. They called me daily and I them, and 2 weeks later, they found an opening less than 24 hours away. My husband took me, assisting me to walk in, unable to function or talk properly at this point. I couldn’t keep my head up, had to lay down for the 4 hour consultation. As I poured my story out to my new doctor and he examined my records of 4 years, he started telling me what each symptom was from. The first doctor in 4 years that had seen these crazy symptoms a million times and reassured me I was far from crazy. I rejoiced and balled my eyes out. Someone was FINALLY listening. He confirmed my clinical diagnosis of Lyme, Bartonella, Babesia and Ehrlichia by my presenting symptoms and everything, including the ignored bullseye documented in my medical records almost 4 years ago. He asked us to stay the night nearby and test at a lab down the street, knowing I was not well. We had to do 17 vials of blood, my labs were sent to Germany and specialty labs in the United States. He was testing for everything. I went home on my first antibiotic and other stuff to help stabilize me. The seizures were daily, at this point I was using a walker so I wouldn't fall because passing out was all too common.
I started my first antibiotic and at this point still bedridden, in pain, literally still praying to die. On day 3, my first Herx reaction occurred. I can describe it as a sweeping toxic sensation waving through my body and I started screaming to my parents, who were babysitting me at the time. I screamed for them to get it out of me. My body went into a seizure type episode and wouldn’t stop. My mom called the doctor and I was rushed to get activated charcoal etc. to help rid the first flood of toxins. When you kill Lyme bacteria, they literally add toxins to your bloodstream, and getting septic shock is always the risk. A normal person would not respond this way. Once it passed, it was second confirmation that this was Lyme. I started to do the recommended sauna to help rid toxins on a daily basis. I ended up in the ER as I got tunnel vision and lost the ability to stand and think clearly despite it not being too hot and only being in there a short amount of time. My sweating mechanism didn’t work due to adrenal fatigue and my blood pressure was too low. ER fixed me with salt etc.
Results came in 2 weeks later. I had every single one of his clinical diagnosis confirmed in my blood and the shocking bonus, even to him, of Rocky Mountain Spotted Fever. It is usually deadly within weeks. Someone just 2 years earlier died after 2 days in my town. He was shocked I survived 3 ½ years with no treatment. It revealed my immune function was worse than cancer. That I probably had weeks to live if I hadn’t got to him when I did. You are supposed to be somewhere between 150-200 on this particular test, I was a shocking 7. He had never seen one this low. I was torn between being thankful to finally know, after so much doubt had been cast upon me by friends and doctors. On the other hand, I was frightened as I found the ugly truth about the disease and that a cure was unavailable.
The health department called as my doctor is required by law to report my case. They asked if I got bit outside if California. I said no and told them exactly where it happened. they said they would not report my case as I was bit outside of their criteria. I asked them how they can consider that they are doing their job properly if they aren’t actually documenting cases so that the public is protected. They said I was bit over 6 months ago so my case doesn’t count. I told them if doctors can't diagnose timely then how is that my fault. So please remember that when you look at these warped records.
Today, after 18 months, on my third PICC line, I have developed reactivated viruses from childhood, have a heart condition called POTS, have encephalitis (inflammation of the brain), Aluminum toxicity, ammonia on my brain, nonfunctioning immune system, adrenal fatigue, being tested for suspected Diabetes Insipidus, and more all caused by Lyme and the co infections that came along. The co-infections are actually worse than Lyme itself.
My family has been my rock. They are why I’m still alive. I will always be thankful to my husband for what he has done to save me. He has sold everything and gave up everything to save me. I am utterly burdened by the guilt as you can imagine. Effecting someone’s dreams and goals is the worst form of torture for me personally. I’m the one, who helps people chase dreams, not crush them. At 55k the first year of treatment and $36,000 a year after it has been more than difficult to afford my disease.
I want everyone who knows me to know my story, the one they didn’t see because they were behind closed doors. I also took the time to give you the short version because frankly if you knew everything, you would be surprised that I survived. If you were there for me, believed me and loved me through it all, I want to say thank you and I love you. If you walked away, distanced yourself, then I want to warn you I’m not the same person. I am still the ray of sunshine that I once was. I am funny and positive as I’ve always been BUT I AM A NEWER STRONGER VERSION who through her own suffering has gained the greatest sense of empathy you can possibly have. I suffer daily even if I say I’m ok and I’m smiling. I struggle but I embrace my good days, when the symptoms don’t crush my spirit and my hope. I NEVER hold back on speaking my truth. I save people lives now and if I had to lose people and little of myself on the way, I’m ok with that, because I now see life in a totally different way. THINGS AND STUFF mean nothing, PEOPLE mean something. Human kindness and human decency and loyalty and compassion are what matters, period!"
I have continued for the past 8 years to manage the different heart problems, endocrine, gastrointestinal, auto immune issues that Lyme causes. Through my journey I have received the following diagnosis from 30 different doctors. They were proven to be false. It was always and still is tick borne illness.
- Chronic fatigue syndrome; MS, RA, Lupus, Early Parkinson's, Early Alzheimers, Anxiety *seizures were blamed on this, Depression, Hypochondriac
But in the end all the symptoms were caused by
- Lyme Disease, Rocky mountain spotted fever, Babesia, Bartonella, Erhlichia
You must change the way doctors are educated as well as force education to doctors stuck in the mentality that they know everything based on old information. Until then the abuse of patients and misdiagnoses will not change. Please imagine this story was written by the person you love most. Do you care now to change things? I bet you would.
Jessica Devine
Washington
RISE ABOVE LYME, Support, Education and Advocacy Group.
Andrea Fox
I beg all of you to please listen to the people suffering. People everyday are being tested and given false negatives and later finding out that they have been sick for months and years and now have chronic Lyme. The protocol the CDC has said to use for treatment of an acute bite has not been enough and people are becoming chronically ill. 14 years ago I got a CDC positive and was not treated properly I am now debilitated. My life is filled with pain and loss. This is happening to millions of people and not just here in the U.S., all over the world. Children are being born with this disease because doctors are not educated. We need change. Please look at the science, look at the numbers of people suffering. This is cruel and unjust if things continue to be handled the way they have for decades. We need change and very soon, people are dying.
Capt. Stanley Frahm
I am a Vietnam disabled veteran and have been very very chronically ill since 1967, when I was in the USAF. I gave my very best for my job and have outstanding evaluations. When I needed help I got only treated with disdain and mockery.
I have been looking for a viable Dx for 50+ years and in 2017 I was Dx with Lyme and co- infections.
I was so excited that I might finally have a chance at a relatively normal life!
I went to the VA and [redacted] my PCP actually yelled at me, that I did not have an infection.
I said I wanted to go to an ID doctor and was sent to a man named Dr. Shirpiro or similar spelling.
He took blood samples and of course the tests came back negative because the tests are not sensitive enough to detect Lyme and co-infections.
I was basically verbally abused and ridiculed with my wife present by this man, and made to feel guilty for even asking to see him and taking his most valuable time.
My prayer in.my weak ill moments is that mockers and insensitive people like him are appropriately punished in this world and not just later in hell which does exist even if they mock that as well!
You all have no idea what we who have chronic Lyme suffer on a daily basis and losing the one life we were given by almighty God!
It is time to deal with this most painful and terrible medical disease just like Chronic EBV and soon Chronic COVID19 that is now inappropriately treated causing future chronicity.
It is actually malpractice, breaking their oath or promise to the many chronically suffering persons.
Actually, criminal for medical persons to refuse to put their best efforts forward for these patients then charge insurance companies for their half hearted limited time.
Betty Gordon
1st I'm very DISGUSTED only 5 people gave their testimony in July.
People chosen need PERSONAL contact with a phone call verifying they received notice they were chosen to read or present their comments.
In fact, since only 5 spoke last time, another 15 minutes should be ADDED to patient testimony to total of 45 minutes!
I am still very sick after 50 yrs. 9 months of CHRONC LYME disease being MISDIAGNOSED 35 yrs. by 40-50 drs.
I also have bartonella, aka cat scratch disease, CSD, 2 species.
MY late husband, JACK GORDON, DIED 11.13.2014, from his never diagnosed:
- NEUROBORRELIOSIS aka chronic lyme disease,
- bartonella, CSD, 2 species,
- a cluster of 24 nematode parasitic worms having LYME inside of them,
- and LEWY body dementia causing his visual and very violent hallucinations like actor Robin Williams had.
I had two brain autopsies done on my husband's brains which showed the above results which I hoped would be published and were not!
1st one I was promised Jack's results would be written up to be PUBLISHED by a scientific medical journal since Jack's brain made WORLDWIDE history having the lyme and lewy body dementia.
Since his case wasn't written up for publishing, I had the 2nd one done as this person said she would try to get Jack's case published. She found lyme and bartonella.
She was the one who suggested I have my blood tested by no. 1 bartonella lab, GALAXY, in NC, to see if I had that too. YES, I have what Jack's autopsy shows on bart, 2 cases!
I am disgusted that Iowa would NOT add Jack's POSITIVE chronic lyme to IOWA'S CDC STATISTICS saying the books are CLOSED; he can't be added for that year!
Also extremely disgusted that Iowa's dept. of health and state's death examiner will NOT AMEND HIS DEATH CERTIFICATE showing the above results from 2 brain autopsies were MAJOR CONTRIBUTORS TO HIS DEATH.
They should have been added to his death certificate showing LUNG CANCER since he was diagnosed with cancer of lung/liver 2 NIGHTS BEFORE HE DIED!
I'm working with ILADS, international lyme/associated disease society, now for Jack's autopsy results being included in their annual conference.
They got a late start on this so it will NOT be addressed this Sept. 2020.
HOPEFULLY, next year it can be discussed in GREAT DETAIL of the major findings of my husband, Jack Gordon's brain.
Persistent lyme disease and OTHER co-infections of tick-borne disease can NOT and shall NOT BE IGNORED any more by we patients.
Hundreds of studies have proven chronic lyme disease exists and MUST be treated so people can be CURED and have quality of health again.
Iowa
Infectious Disease Society of America (IDSA)
IDSA appreciates the opportunity to submit comments to the Tick-Borne Disease Working Group. IDSA is the largest infectious diseases medical society in the United States, representing more than 12,000 physicians, scientists, public health practitioners and other health care providers specializing in infectious diseases. Our members care for patients of all ages with serious infections, including tick-borne diseases. IDSA is committed to ensuring that patients receive the highest quality care for infectious diseases, including Lyme disease. Society members focus on the epidemiology, diagnosis, investigation, prevention, and treatment of infectious diseases in the U.S. and abroad.
We have great sympathy for patients and their loved ones who suffer from both short- and long-term effects of Lyme disease or other conditions. Our goal is for all patients to achieve the best possible outcomes.
IDSA comments below reflect our understanding of the contents of the Working Group’s draft report based upon the discussion at the July 8 meeting. IDSA is pleased that some of the draft report’s chapters offer important recommendations that can strengthen the federal response to tick-borne diseases. However, we are concerned that materials from the July 8 meeting have not been made available to the public with ample time to provide comments. We welcome the opportunity for ongoing dialogue with the Working Group to help ensure that its recommendations best serve the interests of patients and public health.
Chapter 3: Tick Biology, Ecology, and Control
IDSA supports more funding to boost public health infrastructure for tick management, expansion of tick surveillance and implementation of One Health efforts. We also agree with recommended studies to determine effective interventions for reducing the incidence of tick-borne diseases in humans, including novel approaches for vector control, and comprehensive vector control programs that encompass both mosquitos and ticks. Vector control for ticks is not nearly as well understood as vector control for mosquitos and would greatly benefit from further study.
Chapter 4: Clinical Manifestations, Diagnosis, and Diagnostics
IDSA has repeatedly advocated for more research to develop improved diagnostics for Lyme disease and other tick-borne diseases. Particularly for tick-borne infections that depend on indirect assays for diagnosing infection such as Lyme disease and other rickettsial infections, tests that can more accurately indicate the presence of infection are needed. Two areas, in particular, should receive emphasis: patients with early infection before sufficient antibodies have developed and approaches that can distinguish between past and current infection. Both clinicians and patients would greatly benefit from more clarity and ease of interpretation to better manage patient care.
A substantial proportion of patients who have had Lyme disease remain seropositive for decades after the successful treatment of Lyme disease. The development of a test that provides supportive evidence that a patient is free of infection, microbiologically cured, would be of great benefit. Confusion often arises when non-specific symptoms prompt serologic testing for Borrelia burgdorferi, and either EIA values or IgM or IgG bands are interpreted as a new or persistent infection instead of merely reflective of past disease. For patients who are infected a second time, test interpretation can also be confusing or misunderstood. With a valid test correlating with an active infection, clinicians may appropriately prescribe or avoid unnecessary antimicrobial therapy. Progress in diagnostics would significantly reduce misdiagnosis and help patients get to the right diagnosis and proper management more quickly.
Chapter 5: Causes, Pathogenesis, and Pathophysiology
IDSA acknowledges that some patients who are successfully treated for Lyme disease continue to suffer from persistent symptoms after treatment. Further research into the mechanisms of these symptoms is vital to developing safe and effective treatments for these patients. IDSA also supports additional research to discover better indicators of current or past Lyme disease infection to help clinicians and patients understand microbiological cure.
It is essential that federal research funding is geared toward such studies that will truly enhance our understanding of Lyme disease. Some healthcare providers prescribe long-term antibiotics, often in combination, despite multiple clinical trials on this subject that do not support a significant or durable benefit for patients diagnosed with Lyme disease and chronic symptoms.
Research on tick-borne diseases needs to meet standards for scientific rigor to ensure that study results are meaningful and can safely and effectively guide patient care. Attempts to make clinical trials more inclusive or pragmatic must not override the need to ensure that enrolled patients have Lyme disease based on widely accepted standards.
Chapter 6: Treatment
IDSA agrees that therapeutics for symptoms that persist after Lyme disease treatment would be beneficial. We support further research that would develop a better understanding of why some patients do not improve after antibiotic therapy. We also support the conclusion that the efficacy of antimicrobials for the treatment of acute Lyme disease in well-defined patient populations is well documented and add, as previously stated, that additional long-term antibiotic treatments have not demonstrated any clinical benefits.
Chapter 7: Clinician and Public Education, Patient Access to Care
IDSA urges that any curricula for clinicians-in-training and continuing medical education be based on well-designed clinical and experimental studies on Lyme disease and other tick-borne diseases reported in peer-reviewed journals. This will help to ensure clinicians are properly trained to care for patients and will produce the best outcomes for patients and prevent unnecessary harm.
While IDSA supports creating a federal repository of information on Lyme and other tick-borne diseases, all of the information must be science- and evidence-based to ensure patients receive the best care possible. IDSA supports patient access to evidence-based, medically appropriate diagnosis and treatments of Lyme disease that are safe and effective.
Chapter 8: Epidemiology and Surveillance
IDSA supports more funding and research into the epidemiology, prevention and underlying causes of the increasing burden of tick-borne diseases.
IDSA thanks the Working Group for its attention to tick-borne diseases and looks forward to the opportunity to help inform and advance evidence-based policy that will best serve patients and public health overall.
Andrea Jackson
The actions of this year’s TBDWG’s federal leadership is very disappointing. Those actions have not abided by the TDBWG’s mandate and most certainly do not coincide with the spirit and intent of the TBDWG’s purpose.
Echoing the words of Pat Smith at the March, 2020 TBDWG meeting - if you aren’t going to do it (include in the 2020 TBDWG Report to Congress, the unadulterated subcommittee recommendations), then Lyme patients across the world are going to act to finally get justice and to finally have Lyme medicine advance. The U.S. federal government and the so-called Lyme experts that have benefitted from their endorsement for the last 5 decades have had almost 50 years, HALF A CENTURY, to improve and advance Lyme medicine and have not just fallen short but have ensured they do not advance or improve. We are waiting no longer.
The TBDWG leadership has forced out Lyme patient advocates so very few remain on the working group. We have heard mainly from two this year, in a committee of 14. The votes have been swayed so that the federal perspective is what steers every vote. This is due to the [redacted] placement of Gene Shapiro onto the TBDWG - and IN A “PATIENT VOTE” - despite Shapiro’s reputation of working against lyme patients’ interest (for decades he has pushed an ideology that equates to “if you are still sick, its not due to Lyme and you are on your own.” The [redacted] made this appointment despite receiving a petition of over 37, 000 patients calling for [redacted] to not make this appointment. [Redacted] did anyway, with no address to patients providing a reasons to why [redacted] ignored them. [redacted] since has even cast Shapiro’s vote when Shapiro did not bother to show up to listen and evaluate the information hard-working subcommittee members presented.
The federal representatives on the TBDWG are not allowed to vote their conscious or vote for whatever is the right thing to do - they have to vote as a voice for their agency. It was described in the March, 2020 meeting that a federal representative felt for Lyme patients BUT he was unable to do anything but vote how his agency would have him vote. Given that and the 50 years of lyme disease medicine corruption, patients want an investigation into Lyme disease conflicts of interest and how it has and does impact Lyme disease politics. How did the creation of the first lyme vaccine result in the manipulation of the CDC lyme test, a manipulation that still makes this test useless today? What financial interests have and are corrupting Lyme medicine? Why is it that only the Lyme-medicine researchers who will only provide bad-science to support false theories get funding? Why is it that the TBDWG Chair and a few other federal members continue to argue that things such as funding treatment trials can’t be done until it is proven that Lyme spirochetes persist - while those with actual Lyme experience, on and off the TBDWG, acknowledge that they do persist? And what truth is there to the theory that “Lyme disease” was altered in the laboratories of the U.S. federal military? There is evidence that the tick was an agent of disease that the military investigated using and there is evidence that they conducted tick-disease-vector experiments on the military and the public. The house passed a bill that demanded this theory be investigated while the senate did not. Patients want the TBDWG to recommend that an investigation of this issue be done. If Lyme disease was altered and released, information vitally important to Lyme medicine may already be known and held in secret. Why has that not even been discussed when such a discussion has already made its way into congress? Is it just a coincidence that the chair of the TBDWG, who appointed Shapiro to a patient vote and cause the federal representative to control this years voting, does not present his full title in his introductions - a full title that involves biodefense?
Patients have noticed that the TBDWG’s federal representatives have changed subcommittee recommendations by removing important aspects of those recommendations, often with the promise of including the removed information in the related Report Chapter - and then the federal representatives voted to remove that same information from the Report Chapter when the chapters were removed. This is very much not acceptable and it will not go unchallenged.
The TBDWG has yet to acknowledge this year’s Bay Area Lyme Study that found that the CDC Lyme test give false negatives to 71%. Why?
The CDC has told doctors for decades to not test unless the patient resides in one of 15-16 northeastern states. Disease-carrying ticks are found in every state. Given that the CDC Lyme test has a failure rate of 71%, the CDC’s No test, Bad Test agenda has ensured that millions or 10s of millions have gone without a diagnosis.
The CDC stated in the March, 2020 TBDWG meeting that the acute cases are what matters and that there are more acute cases than there are persistent cases. How can there be more of acute than persistent cases when for decades, the CDC has told doctors not to test for Lyme disease and if they did test, the CDC required the use of a test that has doctors telling 71% of patients that they do not have Lyme disease when they do? Is the CDC under the impression that the Lyme spirochete will just “go away” if the patient is not treated? And if that patient, or rather, and if those millions of patients, later all have significant and disabling symptoms, are those symptoms likely completely unrelated to the lyme spirochetes that have had years to reproduce and damage systems and organs?
For 40+ years the CDC has pushed false Lyme myths and the IDSA guidelines that only address acute Lyme disease. All the CDC stats are based on their No test, Bad test agenda. Millions of patients have never been tested and of those that are, 71% (AT LEAST) have been told they don’t have lyme when they do. There is no test for active Lyme disease. There is no marker. How is it that the CDC came to the conclusion that if a patient remains ill or becomes ill years after the initial tick bite that it is not the lyme spirochete that has or is causing their symptoms? How did they come to the conclusion that lyme is rare, lyme only occurs in a few states, that cogenitial lyme does not exist, and that sexual transmission does not occur? They came to those conclusions based on stats that came out of the CDC’s No Test, Bad Test agenda? They pushed those Lyme myths for 40+ years - and now say they can’t make up for their decades of misinformation because no avenue to do so is inline with their policy (the policy they set - and actually go against already when they so choose- see the 2016 Pain Management Guidelines- those are guidelines and yet they say they don’t produce and publish guidelines- they did produce, publish and hire a PR firm to push those guidelines and they were developed by a panel that had not a single pain management specialist or patient representative).
In March, 2020, the federal representatives on the working group presented that their policy will not allow them to present that there are two sets of guidelines for Lyme Disease. The CDC said that this is now their policy although they have pushed the IDSA’s acute Lyme guidelines for decades while telling doctors not to test and if they do test, use the CDC Lyme test that gives false negatives to 71%. Now that it is finally becoming too obvious that the Lyme myths the CDC and IDSA have pushed for decades are not true, the CDC and other federal agencies have set policy that enables them to say that they can’t provide doctors and the public with persistent Lyme guidelines and the acknowledgement that persistent Lyme exists? That is not good enough. The CDC and NIH played a VERY large part in ensuring MILLIONS became and become sick and disabled with persisting Lyme symptoms. To now claim they have conveniently altered their policies so they can not provide doctors, patients, and the world with the truth is a horrendous and lame excuse. The CDC also said that 1. the CDC does provide acute lyme guidance (they just mirror IDSA guidelines even though the CDC says they don’t put up IDSA guidelines), 2. that there are more acute Lyme cases (there are not - after 50 years of 71% false negatives and many never even being tested due to CDC insisting “Lyme doesn’t occur there” when it does- as can be seen in veterinarian Lyme statistics), and 3. that they can’t provide both acute and persistent Lyme information because “it would confuse doctors!” All the agencies stated they can’t put out persistent Lyme information because it would look like regulation. This is absurd. If an agency does not want a thing to appear to be regulation - they can just say “this is not regulation.” The agencies also had no issue at all in 2016 and ever since with allowing their abhorrent and baseless Pain Management Guidelines (again, written by non-experts) as regulation. The federal TDBWG representatives used these an other excuses to not recommend doctor and public re-education (needed due to their actions over the last 5 decades). This is not in accordance with the wishes and needs of patients or in their best interest It is not in accordance with the mandate of the TBDWG.
Millions continue to be tortured by Lyme disease symptoms on a daily basis for years and decades and have become disabled, died, or committed suicide - because of CDC’s manipulation of Lyme medicine. A handful have been manipulating Lyme medicine for decades and the TBDWG leadership appears to be devoted to ensuring that manipulation be allowed to continue. We are aware and we are many.
Weld County, Colorado
Winifred Mauga
How can this working group deny lyme is not chronic and persistent?
... "NIH research is addressing two topics of particular interest to patient advocates, chronic Lyme disease and the occurrence of other tick-borne infections..."
https://www.govinfo.gov/content/pkg/GAOREPORTS-GAO-01-755/html/GAOREPORTS-GAO-01-755.htm
The military is interested in persistent lyme also.
https://cdmrp.army.mil/tbdrp/default
Shouldn't working group members be too?
Lyme Borreliosis is stealthy, opportunistic and often goes misdiagnosed. The most vulnerable are our children and symptoms manifest their whole life. Every organ of the body is adversely affected. Is that chronic enough for you?
Do not belittle and marginalize the severity of lyme disease. TBDWG Members have a fiduciary duty to the taxpayers. Please, Respect that.
Winifred Mauga, Grandma Extraordinaire
Milena Pastore
In 2009, while living on the East Coast, I developed a mysterious onset of symptoms which included a stiff neck, reoccurring fevers, bed-drenching night sweats, GI issues and acute anxiety. Through the years these symptoms persisted with increasing intensity and frequency. As well, new symptoms began to present, including acute all-over body pain (including my insides), cognitive impairment, severe fatigue, temperature dysregulation, depression, heart palpitations, and postural orthostatic tachycardia syndrome (POTS). I went from being thriving and capable, to being bedridden, unable to carry out basic tasks, and barely able to take care of myself. I was forced to leave a life that I loved in bustling New York City and return to Colorado to be closer to family. Bathing, emptying the dishwasher, visiting with friends, or taking my dogs for a walk became impossible. At 33 years old, I lost my career, my ability to be independent, as well as nearly all my relationships.
In 2017, as this mysterious illness reached its peak, I was in total despair, not knowing what was happening to me. According to my bloodwork, I was supposed to be functioning as a perfectly healthy adult. I was told by various health professionals that I was simply depressed and anxious, so I continued to try to heal my emotional and mental health, hoping that this would somehow fix my debilitating physical symptoms. After all, we make ourselves physically sick by being depressed and anxious, right? Or at least, this was what I was being told. And despite my efforts to heal my emotional/mental health, my physical symptoms continued to worsen. It was clear that no amount of anti-depressants, anti-anxiety medications, or therapy, was going to help.
That same year I was fortunate to be seeing a chiropractor who casually said, “It seems like you might have Lyme disease. But don’t worry, it’s nothing to worry about!” At the time, I had no idea how this comment would end up playing a critical role in my health journey. In many ways, his offhand comment was a miracle, because it prompted me to pursue ELISA/Western Blot testing, which indicated positive bands for Borrelia burgdorferi. I was relieved to finally know what was robbing me of my health. And after reviewing the CDC’s Lyme disease webpage to better understand the diagnosis and treatment, my sense of relief only heightened. This is going to be easy! I thought. Just a few weeks of doxycycline and I’ll be back to my old self! Just like the chiropractor said, “Lyme disease is nothing to worry about!”
I found an MD who was willing to treat me for Lyme disease per the CDC’s recommendations. However, since I had likely had the Borrelia burgdorferi infection for several years prior to being diagnosed, a few weeks of Doxycycline did next to nothing to help me. And here I am, years later, continuing the struggle of trying to find the right resources, doctors, treatments, and support. Because of my will to recover and survive, as well as the support my parents and a few doctors who have been willing to treat my enduring Borrelia burgdorferi infection (as well as the many issues I have developed as a result of the long-term infection), by using both alternative and conventional methods, I have regained some level of functioning. Although I do not have the same level of capability I once had, I have been able to take on a few hours of contract work each week and spend more time out of my bed. Yet, my fulltime job remains trying to recover, and my life continues to be significantly affected by reoccurring and debilitating symptoms.
Because I cannot work adequate hours, or receive disability coverage, my parents have had to take full control of my financial resources in addition to spending thousands of dollars annually on various treatment and support methods. Many of the modalities that help to alleviate my symptoms and adequately treat the infection are not covered by insurance. Yet, despite my immense struggle and suffering, I consider myself to be one of the lucky ones. After all, I was fortunate to receive a diagnosis. And I have parents who, despite having limited financial resources, have been willing and able to support my medical costs. Without my parents and doctors who possess knowledge of chronic/persistent Lyme infections, I would surely be homeless and/or dead.
The pervasive belief that exists in the medical community that “Lyme is no big deal. It only causes minor joint pains, and some brain fog,” as well as the notion that “It’s easy to treat,” has caused me and so many others immense loss and grief. There is an entire population of Lyme disease patients who are suffering and struggling to survive. Yet, we continue to be ignored and neglected by the medical community at large. The lack of adequate research, testing, diagnosis and treatment methods, insurance coverage, and support for patients in this country is downright shameful. As well, the outrageous belief that chronic/persistent Lyme does not exist, despite continued positive tests (for active infection) in conjunction with continued/worsening symptoms, is absolutely damaging to patients suffering from vigorous infections, and has added to the suffering of many. But you do not need to hear this from me, there are plenty of highly educated experts who have made it their life’s mission to study this phenomenon, many of whom have already provided you with adequate information to back this up.
I understand that there are members sitting on the TBDWG who resist the notion of chronic/persistent Lyme. To these members, I implore you, since you are so set on the belief that chronic/persistent Lyme cannot exist, and is actually, “a religious belief,” please tell me, what is the underlying cause of continued positive test results showing active infection, as well as sustained/worsening symptoms in thousands of Lyme disease patients? If, in fact, I am not suffering from a persistent Borrelia burgdorferi infection, then what am I suffering from? Where do you suggest I go for treatment, since, in your view, Lyme disease is quite easy to treat and recover from?
I beg the TBDWG to please help Lyme disease patients. Please help us with adequate funding, research, testing, diagnostic measures, treatment options, insurance coverage, and other types of support that can help us to overcome this terrible disease and gain back some quality to our lives. Please stop denying chronic/persistent Lyme and recognize that this is a real issue. Many of us already have, or soon will, reach the bottom of our resources. We desperately need your help. Many will benefit if you recognize the existence of chronic/persistent Lyme disease infections and offer adequate solutions.
Thank you for taking the time to read my letter.
Respectfully,
Milena Pastore
Longmont, CO
Elizabeth Vari
The following is written from the viewpoint of one affected with lyme disease and co infections. Twenty five years since vector bitten, offers an insightful paper trail. The retrospective view is shared to implore change.
While diagnosed by a Board Certified Infectious Disease specialist in an endemic area in NJ, time delayed information would most certainly have given greater insight / a protocol befitting to restore optimal health.
Time accumulated knowledge presented a root cause of an exposure years prior to the vector bite. A superfund exposure of chemicals provided a near threshold of contaminants, implicating the nervous and immune system. Lyme treatment reveals the contribution of Lyme Disease with ability gains. However, the threshold of contaminants require a parallel treatment plan. Very few have knowledge concerning treating one of the aforementioned insults alone.
I have spared the lengthy, ugly, of misdiagnosis and robbery imposed by many who have sworn to do no harm.
The million dollar question pressing, is how many scientists, when prompted to give a protocol, would provide the long standing honored protocol, in revelation of prior toxic implications?
Through much research, connecting with the best in their field of study and excluding factors, an insidious manifestation can no longer be dismissed or an overnight treatment. Just as Covid-19 concerns prevail in many with comorbidity factors, Lyme alike, hinders as an additional, complex insult.
My horror has been shared with the CDC/ATSDR on more than one occasion. Exclusion from (TWO) NIH Lyme studies, where probable answers are known and supported, screams a science we don’t care to understand. My write in requires new lenses to look through as we spend millions in research in quest for answers. In light of the astonishing many who acquire Lyme disease yearly, there is work to be accomplished.
NOW IS THE TIME TO PUT THE LYME SCANDAL TO AN END AND EARN BACK TRUST WITH COMMITMENT TO DO NO HARM.
Lynchburg, VA
