This webpage displays the written comments received by the Tick-Borne Disease Working Group for the July 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 am a Registered Certified School Nurse. I am literally watching pediatricians, physicians, psychiatrists, rheumatologists and infectious disease physicians misdiagnosis children that were actually suffering from chronic, persistent tickborne infections. Children are being set up for a lifetime of chronic health conditions right in front of my eyes. Physicians are not even screening symptomatic children for Lyme disease and when they do and the test is positive, they dismiss the results of the diagnostic test and deny appropriate treatment.
When I lost my brother due to pure Lyme disease ignorance within the medical community, I began to do my own research. My brother was training for a triathlon in Pennsylvania until he was stricken by multiple tick borne infections that confined him to a wheelchair, robbed him of his voice and eventually lead him to his death. On his death certificate , “Chronic Lyme disease" is listed as a cause of his death yet was never considered when he was alive. Fast forward one year, I pulled a tick from my abdomen, it had been there less than 24 hours, I thought, “ I am a nurse, I know what to look for.” About three weeks later, I developed flu like symptoms, joint pain, visual floaters as well as other Lyme symptoms. I immediately knew I was infected with the same illness that took the life of my brother. Even given my history of a recent tick bite and newly developed symptoms, I too was denied proper medical treatment because of a negative CDC test. Thankfully, I knew what to do and frankly my brother saved my life.
Today, I am now able to recognize all the children that have been misdiagnosed with ADHD, Mood Disorders, Seizures, Growing Pains, Anxiety, Reynauds-like Phenomena and Autism Spectrum disorder. I began advocating for these children that were wronged by the medical community. I contacted parents, two children ages 6 and 7 were both classified “ Autistic” but after reviewing their medical records, I was taken back. The six year old with a history of high intermittent fevers, migrating joint pain, headaches and neurological decline is now correctly diagnosed with Chronic Lyme Disease, TBRF, Bartonella, Babesia and Post Infectious Auto Immune Encephalitis. The seven year old with a history of cyclic vomiting, alopecia and sudden neurological regression tested CDC positive for Lyme disease. He was not only positive for an active Lyme infection but was also IGG positive. He was started on antibiotics by an ILADS trained physician but as the bacteria died, toxins increased in his brain causing severe psychiatric symptoms. He began eating feces and became aggressive. The parents went for a second opinion to a pediatric infectious disease physician who advised stopping the antibiotics and told the parents three weeks was all that was needed. How do these IDSA physicians sleep at night? A third child also with a medical history of “Autism” tested positive for tick borne relapsing fever and was only prescribed a short course of antibiotics and deemed cured. When did physicians start playing God? Who decides a child with a diagnosis of Autism is not also fighting TBD which manifests itself similarly to Autism?
Another 9 year old complains of migrating joint pain and blue discoloration of her hands, she was diagnosed with “Reynauds-Like” Phenomena and Flat Feet.” She was given a script for orthotics and physical therapy. Her rheumatologist had the audacity to send a note to school stating "this child does not have Lyme disease", (based on an negative ELISA). A six year old with a history of leg pains and limping was diagnosed with growing pains for over a year until his recent diagnosis of Lyme disease and Bartonella. I could name so many more examples of medical negligence but I am praying you get the picture.
It is NO coincidence that New Jersey has the highest cases of Autism and Lyme. These precious children are not even screened or tested for Lyme disease through CDC standards, not that it would make a difference! This alone is criminal! We have no test for Autism and we have no reliable test for Lyme disease so how many children were actually misdiagnosed with Autism? With the recent death of our beloved, Dr. Neil Spector, it is quite obvious the CDC, IDSA and the NIH should all be held accountable for Dr. Spector’s death, my brother’s death and for the suffering of these children mentioned above as well as their families. Enough is enough!!!
Are these physicians turning their backs on our children for fear of consequences from the CDC and insurance companies? Are they lying to parents to protect their licenses or are they blatantly ignoring a silent epidemic? I have parents calling me in tears stating their physician does not believe their child has Lyme disease, parents being told there is nothing wrong with their child, that it is all in their head, parents being told their child who can’t walk is faking etc.
Members of the TBDWG, you have the opportunity to save these children and the millions more that will be misdiagnosed. Bartonella is plaguing the brains of our youth, the suicide rates are skyrocketing, the “cutting behaviors” are off the chart yet this horrific tickborne infection is being ignored. We have no reliable test! We have no cure!
Desperately,
Anonymous
Anonymous 2
This is a real situation with real pain and suffering. My daughter, 33 yrs old has Chronic Lyme Disease. Over the years, she (and we) have seen over 30 doctors with no diagnosis except that she needs to see a mental health provider. She had been given the CDC “approved” tests for Lyme multiple times, all negative. It finally was diagnosed by a Holistic doctor because everyone else were following CDC guidelines.
Fast forward several years of treatments, flare ups and Co infections, she still battles this horrific disease. She has good insurance but most of her treatments are not covered. Despite her husband having an excellent job ( she is unable to work), they cannot afford her treatments. That’s where my husband and I come in. We spend roughly $12,000 to $15,000 a year for her health care instead of saving for our retirement. She also has a 5 yr old son, who, we believe, also has Lyme from her.
This disease is growing exponentially in this country. It is going to be bigger than HIV. Lyme is in all 50 states and we still have doctors that tell us “it’s not in this area”. Until our government takes this seriously, with research, education and funding we are in real trouble. If you think Covid19 is bad, this disease is much worse overtime and will affect millions more. Wake up!!
This is a life sentence of suffering. Arthritis, bone pain, brain fog, parasites, Lyme carditis, and the list goes on...
Please take this seriously, fund the programs and research. We are counting on you.
Sincerely,
Anonymous
Anonymous 3
Dear Tick-Borne Disease Working Group,
I got infected with Lyme, Babesiosis, and Anaplasmosis while visiting Maine in August, 2015. Doctors in San Diego, California refused to consider that I had tick-borne infections because my initial blood tests were equivocal based on CDC standards even though a clinical diagnosis could have been made based on my symptoms. My symptoms progressed over time until I had two pulmonary embolisms in 2019 that nearly killed me. After the second pulmonary embolism, I started to see a Lyme specialist in another city. Subsequent positive blood tests confirmed that I had Lyme, Babesiosis, and Anaplasmosis. I have been on antibiotics for six months, and I am starting to feel better.
I have learned several things based on my experience with tick-borne infections. Doctors need training to make clinical diagnoses of tick-borne infections. Tests for tick-borne infections are inadequate. Long-term antibiotics are required to treat persistent tick-borne infections.
Thank you,
Anonymous
San Diego, California
Anonymous 4
Chronic Lyme disease and co infections have devastated and bankrupted my family.
My young daughter was misdiagnosed and suffered for five years going from doctor to doctor hospital to hospital. When we finally figured it out she was cdc postive For Lyme, babesia, bartonella and she had mycoplasma. She had also developed heart block. She has missed nearly two years of school. She was an accomplished gymnast but became depressed and anxious ( symptoms of bartonella) she talked about wanted to die every day at 13 years old. Finally with correct treatment for more then two her symptoms subsided. She has been pain free for a few months and completely normal mentally for a year now with treatment.
She is not the only person it my family that has Lyme and co infections. We all have it!
Another son had a ablation on his heart before we realized it was caused by an unchecked tick born reoccurring fever infection from a tick bite. Another son was so fatigued from his Lyme and bartonella infections that he pretty much slept thru all of HS. He is still very sick but after treating my daughter I have no money left to treat him.
Lyme must be acknowledged and Lyme families need help. We here and we are suffering. I am barely hanging on. I am sick myself but I don’t treat myself because I can’t afford it. Lyme specialists are out of pocket and regular doctors have been no help. Please see us. Please help us.
My eight year old has this too and I have not treated her yet. She diagnosed but I have been triaging my kids treating who is sickest first since it’s 100 percent out of pocket.
Please help.
Anonymous
Anonymous 5
I live in the southern KM State Forest of WI. From 2008 to 2020 I've had 6 tick-borne infections. Each time I was treated with varying amounts of doxycycline depending on the doctor I saw at the time. I have tick-borne co-infections also and developed late-stage Lyme disease. For years I suffered trying to get help from doctors, psychiatrists and insurance companies who would not acknowledge late stage neurological Lyme even though I had clinical documentation of each and every tick bite.
I was a high-functioning business manager for 20 years but I've been unable to work and on SSDI since 2012. Seeking wellness, I've spent a fortune on unsuccessful therapies not covered by insurance. There is something seriously wrong with the CDCs treatment guidelines for tick-borne illnesses and LATE STAGE LYME. It's time to change this.
Thank you,
Anonymous
Plamyra, WI
Anonymous 6
Dear Tick-borne Disease Working Group (TBDWG),
I have been affected and infected with tick-borne diseases (TBD) since 1993 and was not diagnosed until 1999. This was due to physician over-reliance on the standard two-tier testing. I was informed multiple times that my testing was negative and therefore I was not infected with Lyme disease. This negated the many debilitating symptoms that I had and left me undiagnosed. None of the physicians in the state of Connecticut were even testing for babesiosis which I was also infected with. Once I was diagnosed in 1999, I knew what my older son who was 10 years old at the time had been suffering with for six years. His Lyme disease tests had been negative, so he was never treated. This is how patients become chronic. It is ridiculous to think that everyone gets the rash and tests positive as the Infectious Disease Society of America and the Centers for Disease Control and Prevention (CDC) pontificates. Due to this pontification people become chronic.
Once my son and I were diagnosed my daughter became very sick. I took her to her pediatrician and was told it was a summer flu, ear infection and the malar rash on her face needed to be assessed by a dermatologist. I was also told I had Lyme anxiety, which is a standard party line for the IDSA promoters (Eugene Shapiro). The next day my daughter had seven erythema migrans rashes (disseminated Lyme disease). I had informed the pediatrician that I had removed a tick from her 33 days prior. I then asked him what would have happened had my daughter not had the rashes and his brilliant response was “I don’t know.”
My third child became ill the following month and the same pediatrician would not consider Lyme disease, my son had three small ring like rashes on his thigh and a high fever, he was two and a half years old. I took him to a pediatric tick-borne disease specialist, and he was positive for Lyme disease. What would have happened to my son had he been allowed to go untreated? This is how children become chronic!
After my entire family of five were all diagnosed with Lyme disease, I called the Connecticut Department of Public Health (CT, DPH) and the CDC in Fort Collins to alert them to my family’s situation, I was told nothing more than to use personal protection. I had never even heard of personal protection measures in Connecticut, the state where it all began. Neither had my neighbors, many who were also suffering from tick-borne diseases. We found no help from our local doctors or local hospital in [redacted], Connecticut. Doctors did not want to test and many of us were disregarded. We live in a highly Lyme endemic area where everyone knows someone who has Lyme disease and too many are chronically ill. Many of us with children were asked to leave our pediatric practices after our doctors found out that we were going to a specialist who was more knowledgeable about tick-borne diseases. People were leaving the state to find care. The CT DPH was investigating doctors who treated Lyme. One of the doctors who testified against my pediatrician who treated my children’s chronic Lyme was Dr. Eugene Shapiro. He is a member of the TBDWG, and a petition has been waged against him to have him removed. This petition was blatantly ignored by the TBDWG. We must ask why was this allowed?
My story is just one of the stories of families in Connecticut and worldwide. So many people are becoming infected every year, and nothing is being done to halt the spread. Reliance on the cases that are reported to CDC from CT are negligently in error and give a false impression to the people of the state, the media, legislators and the medical profession. (CT DPH 1991-2018) As tick infection rates are rising the number of cases is dropping according to the CT DPH. How can that be? It is a paper drop that is not explained. People need to be given accurate information in order to make an informed decision of their risk. If CT would have not dropped mandatory laboratory reporting in 2002 what would our numbers have looked like in 2018. CT DPH did reinstate laboratory reporting but not with the number of labs that were involved in 2002. It is no more apples to apples.
There is no state-wide education program in CT to inform and educate the people about Lyme and tick-borne diseases. There was nothing in 1999 and there is nothing now. The Epidemiology Department of the Connecticut Department of Public Health has received millions to study Lyme disease yet none of this has ever been sustained to protect the people of Connecticut. If people do not know about the early signs and symptoms and prevention measures, they will not take appropriate measures to protect themselves and not seek care early. This is how chronic Lyme disease happens!!
The TBDWG was to include the voice of the people and what is truly happening in the communities across the nation. This group has been hijacked by an agenda that is detrimental and deadly to the Lyme community now and to future generations. Chronic Lyme must be included and not be blindsided by parties that are involved in the suppression of the people who have the experience to make a difference working with our government.
Lyme disease cases 1991-2018. Connecticut Department of Public Health. https://portal.ct.gov/-/media/DPH/EEIP/LD-by-Surv-Method-1991-2018.pdf
Thank you for your attention to this matter.
Sincerely,
Anonymous
Anonymous 7
I am the President of a non-profit organization formed to bring awareness, support and education to those suffering with Lyme disease and other tick-borne diseases. I am also a mother who had to watch her child suffer through years of illness with no answers.
11 years ago, our family began a journey battling chronic, debilitating Lyme disease. At that time, we had no idea what we were looking at. Our 12 year old daughter became ill. She had been bitten by a tick, but her physician didn't think there was anything to worry about, so we were advised to watch and wait. Over the next several years, we would seek medical care from many physicians, cardiologists, neurologists, electrophysiologists, genetic specialists, holistic practitioners. She went through many tests, procedures, a spinal tap, biopsies, diagnostic work ups, evaluations, emergency room visits, and each time we were left without answers. As each day and week and year passed, she became increasingly more ill. The mysterious illness affected her heart. She began having seizures. She was pulled from school. She was so sick she could hardly care for herself. We felt she was dying, but no answers were found.
After years of searching, we met Dr. [redacted] in New Haven, CT. Dr. [redacted] is a pediatric LLMD, and he diagnosed our child with Lyme disease and multiple co-infections. Her treatment would be long, and difficult, but finally we had answers and we began to see her getting better.
Today, our beautiful daughter is a young adult, she missed her childhood and teen years due to illness. She is strong, a warrior. She has persevered when many would have given up. But if those physicians treating her all through the years would've been aware of chronic Lyme disease, if they would have had recommendations from the CDC and other agencies for testing, diagnosis and treatment options, she would not have suffered so.
We have had to be very persistent in seeking answers, never giving up as the medical community ignored her illness. We do not want anyone to ever go through what we have endured as a family. Chronic illness is devastating. Financially. Emotionally. Physically.
We are asking for you to acknowledge the existence of chronic Lyme disease. Our families and hundreds and thousands of patients who are suffering need you to bring hope and answers. For those who suffer an acute case of Lyme disease, treatment is effective and long-term illness is avoided. But for so many, this is not the case and their lives are forever changed. The sickness is enough to destroy, but the realization that they are not recognized or acknowledged is hopelessly discouraging and treatment is often impossible to find.
Chronic Lyme disease is real. Please help those who suffer to find help and answers.
Anonymous
Anonymous 8
To Whom It May Concern:
I'm writing to ask for your help as my daughter battles what we have been told is Lyme disease. My daughter is a beautiful, strong, 33-year-old wife and mother of two young daughters. They live in Oklahoma. I am her mother and I live in northern Kentucky. During our last visit together in December, 2019, she shared with me that she had been having some strange health issues, including muscle ache, extreme fatigue, burning, itching skin, and some discharge matter coming out of various parts of her body. Since December, her condition has gotten much worse. There have been days when she cannot get out of bed. She has painful lesions throughout her body and is uncomfortable most days. She had been to her primary care doctor, to her dermatologist and then to her OB/GYN looking for answers. The OB/GYN doctor personally had suffered from Lupus and was the first doctor to not dismiss her symptoms. She referred her to a specialist based in the DC area. She is now doing telemedicine appointments with a nurse practitioner who is charging her hundreds of out-of-pocket dollars for what I feel should be appointments that should be covered by medical insurance. The medicine being prescribed to her is some traditional long-term antibiotic therapy along with some other medicine not covered by insurance. The medicine is certainly helping her function 50% or more, although I've read that there may be long-term effects if she remains on antibiotics for a long period of time.
What can be done to assist my daughter and other patients battling this horrible disease? Why can't her primary care doctor or dermatologist or neurologist or some other authorized medical professional diagnose and treat her? Why can't medical insurance cover what she needs to function?
Please let me know if there are steps she or we could do to resolve this troubling situation.
Sincerely,
Anonymous
Anonymous 9
Until two of our children were affected by Lyme Disease (and probable co-infections), we had no idea the devastating effect of this disease. I want to share their stories, which are like the stories of thousands upon thousands of other people here in the United States.
Our 29-year-old daughter has been ill now for three years. For much of that time, she has been bed-ridden, or unable to do any but the most basic household tasks. She has three young children, so I (her mother) spent many months helping to care for her and my grandchildren. Her symptoms erupted suddenly, after the birth of her last child, and were so severe that we thought she was having a heart attack or stroke. She had numbness on one side of her body, heaviness in her limbs, shooting pains in her muscles, and difficulty raising her head. The only abnormality found by medical tests was that she had developed fluid around her heart and lungs. Doctors and specialists couldn’t tell her why, and nobody could explain her symptoms. She gradually improved over the next few months, but had a relapse after catching a bad cold. This time, the Lyme symptoms did not recede. Instead, they intensified. She still had the fluid around her lungs and heart, and medical doctors had no answers. They would run tests, and then send her home, where she continued to suffer a complete physical collapse. It wasn’t until a year after the onset of her symptoms that she was finally diagnosed with Lyme Disease by a doctor in Virginia. Unfortunately, the disease by then had become intractable. The doctor who diagnosed her started her on long-term antibiotic therapy, which is controversial, but for her proved a lifeline. The drugs’ necessity was obvious because when she went off of them too soon, she immediately “crashed,” and had to start her recovery over again. At some point, she began to develop a sensitivity to the antibiotics, so had to stop them. She continues to have moderate to severe symptoms, and has decided to try “bee venom therapy” on her own, simply because there is nothing else out there for her. This disease has ravaged her body, her life, and her career.
Sadly, our 23-year-old son has also developed Lyme Disease (and probable bartonella co-infection), despite the fact that he and his sister have not lived in the same house for more than 10 years. He began to suffer symptoms two years after she did, while he was living in Idaho, while his sister developed her symptoms while living in New Mexico. Both grew up in upstate New York, and would visit in Virginia, so it is possible that they were infected in either of those states. (However, it has become apparent that Lyme is now present in the West as well as the East of the United States.) Our son’s symptoms began a couple years ago with brain fog, difficulty focusing, and fatigue. These symptoms progressed until he experienced a “crash,” with extreme nausea, muscle pain, headaches, and profound fatigue that often prevented him from getting out of bed. Like his sister, he found no answers from the medical establishment. A colonoscopy and a scope into his stomach showed no inflammation. Yet my son lay in bed day after day, unable to eat, feeling as though he were dying. He went to the E.R., and was sent home. As with my daughter, a doctor finally diagnosed Lyme with Bartonella co-infection. Our son has also been on long-term antibiotics, which have helped. Six months after his “crash,” he is gradually improving, although he is still an invalid. He has tried twice to go off the antibiotics, but each time relapses. Before the onset of Lyme Disease, he had been working full time as a carpenter’s helper, and had started an MBA program. Due to his illness, he has had to quit work and withdraw from school. He has lost over forty pounds.
With these devastating experiences in our family, it is hard for me to believe that, “There are currently no FDA-approved or commonly agreed-upon treatments for patients who have undergone a recommended [short-term] course of antibiotics for Lyme disease but who continue to have persistent symptoms.” (Alison Rebman and John N. Aucott, “Post-treatment Lyme Disease as a Model for Persistent Symptoms in Lyme Disease,” 25 February 2020 https://doi.org/10.3389/fmed.2020.00057)
It is equally hard to believe that “while Lyme disease has been a nationally notifiable disease in the United States since 1991, the CDC does not track disease outcomes or cases of persistent symptoms.” (Rebman and Aucott, from Centers for Disease Control and Prevention. Lyme Disease Surveillance and Available Data. Available online at: https://www.cdc.gov/lyme/stats/survfaq.html (accessed December 3, 2019).)
How is this possible?! I don’t know. But we have experienced firsthand that most doctors have NO knowledge of and NO treatment for this terrible scourge, which affects over 300,000 Americans each year. How many more people have to live through this nightmare with almost complete lack of understanding and support from the medical establishment?
I sincerely hope that the Tick-Borne Disease Study Group will make recommendations to HHS and Congress that will change the status quo. More research and better treatments are urgently and desperately needed.
Anonymous 10
I have been suffering with Lyme Disease and Babesia for almost 9 years. I live in the state of Mississippi, where most doctors don’t believe that Lyme Disease existS here, probably because nobody is testing ticks to find out. My Lyme Disease is confirmed by IGENIX lab test and the Babesia is a clinical diagnosis made by a Lyme Literate MD (who has treated almost 1,000 Lyme patients). It was 5 years before I was correctly diagnosed. I spent 2 years on multiple antibiotics, including 8 months on IV antibiotic. I took between 3-4 antibiotics at a time, as well as Malarone for the Babesia. In October of 2018 I went to see a physician in California and she ran a test that determined I was also mold toxic, most probably from clean up work I did after Katrina. I took pain medicine for 2 years, but currently I am just dealing with the pain I have and no longer taking pain medicine. At the end of the two years of antibiotics I was much better, but I had plateaued in my recovery. I made a decision to begin Dr Ross’s herbal treatment for Lyme disease and stop the antibiotics all together in January 2019. I additionally began taking herbals for detoxing from the mold. I began to decline again somewhere in late summer 2019, with my cognitive function slowly getting worse. In September I tried to kill myself. By January 2020 I was in a full blown relapse and was no longer able to work. I resigned my job of 27 years because I was no longer able to physically, as well as cognitively, perform my job. We put our house on the market and bought a cheaper house that we could afford on just my husband’s salary. I took 90 days of Doxycycline around the holidays in 2019 and saw little improvement. I started having my Babesia symptoms again and was restarted on the Malarone, and also was given Alinia in January 2020. It has been with these two medicines that I am beginning to have an occasional decent day.
Tick born illnesses are not for the weak, poor or undetermined individuals. When I tried to kill myself the ER MD told my husband that Chronic Lyme Disease did not exist...what the #$@&%! I have been suffering for 9 years with this stuff. Why are doctors not being educated with all the new scientific evidence that people like me are not lying, we really are still sick. Please make Lyme disease research a priority, and insurances companies required to pay for treatment. I for one will be grateful should we make progress in our defective testing abilities, the ineffective treatment options for long term Lyme, and Educate MDs that chronic Lyme disease does exist, of if they insist call it post treatment Lyme disease. Thanks!!
Anonymous 11
I have been sick from tick borne disease for the last five years and continue to fight every day to stay functional enough to work and take care of my children. Because I did not present with the signature bulls eye rash, the diagnosis itself took 2 years, which allowed my disease to advance and evade traditional treatment once finally diagnosed. Fifteen doctors and specialists, countless appointments and copays, consistently hearing I was anxiety ridden and "just tired" as I became more and more debilitated. I am lucky to be of means that I was able to continue to search for what was happening to me, as so many others are not, but it should never have had to be that way - especially in an area of the country where ticks are so endemic. Testing must be improved; doctors must be educated and the public should be made aware of the potential symptoms of these diseases so many others are not made to suffer.
The CDC website essentially says the best way to treat Lyme disease is to not get it in the first place - this is unacceptable. The gold standard in the world for research into infectious diseases should not throw up their hands because there is not an easy solution to this silent epidemic. We need research into treatments - real research where those who are suffering are not excluded from the studies because they do not meet antiquated standards for "having tick borne diseases". We need public health outreach and education for doctors so testing for tick borne diseases in spring through fall becomes as commonplace as testing for the flu in the winter. Mostly we need to be believed, that even if the bacteria is no longer in our bodies according to current tests that something has occurred as a result of a tick bite that has completely destroyed our health.
I am grateful this working group has been put together and I have been encouraged seeing so many voices being heard in prior meetings. I have hope that positive steps will be taken to help so many of us that are currently suffering and prevent others from suffering the same fate. We are counting on you. Thank you.
Anonymous
Washington, DC
Anonymous 12
I was diagnosed with Lyme when I was in high school. I am now 32 and still fighting for stability in my health. I am one of the lucky ones because I was diagnosed with a blood test (that's not the case for many), and my parents have been able to support me financially and pay for doctors and treatments that are not covered by insurance. I initially went through insurance and followed the guidelines for treatment, but that wasn't enough. I continued to suffer and therefore had to continue to fight for my health without help from insurance. On top of living with a confusing and debilitating illness, my inability to support myself paired with the financial burden my medical bills have put on my parents weighs heavily on me. My experience has been that (just like any other illness) stress and the severity of symptoms are correlated. And living in a world where the systems and professionals (informed and governed by the systems) who are supposed to help me instead deny the existence of my disease is extremely stressful and not condusive to healing. Those of us with chronic Lyme should be focused on fighting the disease, not fighting for validation and resources. I am not a scientist, so I don't have a medical argument to prove to you that chronic Lyme exists, but what I do have is 17 years of lived experience that says it does. The last 17 years of my life have been a roller coaster that basically looks like this: I am sick to the point that I am suffering and have to put all of my time and energy into healing, I receive treatment for a couple of years (spending exorbitant amounts of money), I find some stability and start living my life again, only to experience a life stressor, which leads to a relapse of symptoms, and then I start the cycle all over again. It's disheartening and exhausting.
Instead of denying the existence of chronic Lyme, the government should embrace the reality of our experience and helped to support patients. If the government doesn't embrace chronic Lyme for what it is, how are we ever supposed to find a cure? We need the government to admit that chronic Lyme exists because without that admission, we cannot get the care we need and support from insurance. I have been a walking science experiment for as long as I can remember and had my reality denied by the very people and systems who are supposed to help me. I even had to have the bandages for my PICC line (used to administer IV antibiotics) changed in someone's kitchen (putting me at a higher risk for infection) because I couldn't get proper care in the state where I was attending college. And yet, I'll repeat it: I am one of the lucky ones. My having to fight for appropriate care while living with a chronic illness been traumatizing. My experience has led me to lose faith in the government and the medical system. It shouldn't be this challenging and expensive to get the care we need. The only reason I am well enough to write this is I have had the financial resources that have allowed me to work around the system, utilize a variety of unconventional treatments, and focus on my healing (a privilege not afforded to most). Yet, I still live in fear of future relapses and associated financial strain.
We need your help. Please do the right thing by officially acknowledging chronic (or persistent) Lyme.
Anonymous
Anonymous 13
I am writing to express my concerns.
This is such a shock to see that some Agencies on the Federal HHS-Tick-Borne Disease Working Group are refusing to address persistent Lyme. I have PERSISTENT/CHRONIC LYME DISEASE. It is real. It exists.
I am a Federal Government employee -Wildland Firefighter. I’ve been lots of places for my job and for personal life. I have been bitten in the past by ticks. I have PERSISTENT/ CHRONIC LYME DISEASE. It has impacted my life, my health and altered my mental status. This is a persistent infection. I have suffered with the persistent debilitating infections that our government is still refusing to address. Open your mind to science.
Anonymous
Poncha Springs, Colorado
Anonymous 14
Our Lyme journey as a family started in 2001 when my husband was diagnosed with Lyme and Co-infections by an Infectious Disease doctor at Rhode Island Hospital. Eventually, our son, daughter and myself would follow suit. Our son ended up missing all of middle and high school and came close to losing his life. My late diagnosis lead to hearing loss and demyelinating disease of the central nervous system. It is hard to fathom that after these many years and after numerous published studies that documents persistent, chronic Lyme Disease, and patient reports of long term persistent symptoms and severe disability, that we are still having this conversation. Patients remain isolated by a health care community that does not believe them while thousands more patients become chronically ill with each passing year. This is heartbreaking. We simply need physicians who understand, validate us, and treat. Why does this have to be so hard? How many more people have to needlessly suffer and die? Please see us and heal us in time with early diagnosis and treatment. Physicians are human and do not fully understand the testing and treatment. Help them understand. Do not be dogmatic, be open minded. Physicians have to understand that the controversy lies in the testing and not everyone will have a classic bullseye rash. Think outside of the box, do not use the test as the holy grail. The time is changing. We may need to leave a generation of physicians out of the loop, but things are changing. Please help facilitate this change. The way to deal with resistance to change is by facilitating communication and understanding between people with different points of view. Change needs to happen now. You are all in a position to make this happen. Please do not miss this opportunity to help so many people who are needlessly suffering. As Oliver Wendell Holmes said, “A mind that is stretched by a new experience can never go back to its old dimensions.”
Lyme Disease Association, RI Chair
An Anonymous Mom
I am a parent of a child affected by Lyme, Bartonella and Babesia. Our youngest daughter, Michelle, now 28, was diagnosed at 22 with these diseases. In retrospect, her symptoms first began the summer after kindergarten, at age 6, when we moved to a new house in the city of [redacted] that bordered an undeveloped area and was rife with deer and wildlife. We didn't know the collection of weird symptoms she started complaining about was indicative of diseases. Her health was affected first by headaches in first grade, then migrating motor pains, skin symptoms, breathing problems and declining cognitive abilities. By high school she had begun having food allergies and her reading comprehension skills had declined. She had some mental symptoms - rage and overly-emotional outbursts throughout. In college she developed anaphylactic symptoms to food, and had to get an epi-pen. Her fatigue and cognitive difficulties grew to the point where she had to drop out of college after her sophomore year.
She moved back home with us and continued to decline. She began having lightheaded spells, sometimes coming close to passing out in a grocery store. Her food allergy problems continued to grow - to 65 foods. Her diet was reduced to everything homemade, basically meat, rice, salt, cheese, black beans, a few green vegetables and blueberries. That's literally all she's been able to eat for the past 6 years. She was so sick that we were grateful if she had one good hour in a day. Most of the time she just lay on the sofa to watch a movie.
As her body got more and more sensitized, she couldn't be in any older buildings that had mold, or she became nauseated and dizzy. The potential apartments she could rent dwindled because of mold contamination. She moved out of our house and lived with her brother. Money was too challenging to calculate, so either we or her brother handled her finances & taxes. Sometimes she was so fatigued that she couldn't hold her phone. She couldn't follow a movie plot. She hasn't read a book for years.; Her dad and I cooked for her, froze meals and delivered them to her because she didn't have enough energy to cook. At 28 we still take her to her doctor's appointments. After 2 accidents, she realized she wasn't sharp enough to drive, so she stopped driving.
The consequence of these diseases running unchecked through her body for 17 years is that she has pretty much all the symptoms, from her brain to her joints, muscles, nervous system and blood. She is diagnosed with Lyme, Babesia, Bartonella, POTS, MCAD, chronic fatigue syndrome, anemia, food and chemical allergies, mold sensitivity - and probably more, but that's off the top of my head.
We have had a good Lyme-literate doctor for the past 6 years. I shudder to think where we would be without her. We try everything - she's taken years of antibiotics, anti-malarials, anti-parasitics, anti-helmetics, many herbs, things to build up her immune system and calm down her overly-allergic responses; we bought a home hyperbaric oxygen chamber that she's used daily for 3 years and she's tried Disulfiram - the latest hopeful drug for those with Lyme. She's lucky to have her family help her - many people don't.
Living in the world of Lyme disease, I hear people's stories and I know there are those who are sicker than our daughter, but it has been devastating to see her lose her teen and young adult years to these diseases. Her quality of life has been terrible - friends abandon you when you've been too sick to do anything for years. No one would wish this on their worst enemy.
I'm begging you to please, please, devote more money and interest to developing solutions for those like Michelle who are suffering from Lyme and its co-infections. We need better testing, better insurance coverage, and better treatments.
No one deserves what these people have suffered.
Thank you,
An Anonymous Mom
Oregon
Sheri Allen
Amber
Christine Arps
Gretchen B
Persistent Lyme (chronic) needs to be acknowledged and addressed by the federal government. Countless thousands of patients are being discriminated against--46 years of Lyme & no help has ever been provided! CDC & NIH need to be held accountable.
It was only after I spent thousands of dollars of my own money ( insurance didn't cover) and advocating for myself that I finally saw improvement in my symptoms.
I was in such bad shape that it all seems a blur. I couldn't think straight, I had executive function issues and had to leave my job. I also suffered lyme carditis. This could have killed me. Who knows the damage it has done.
COVID-19 comes on the scene and all kinds of money is thrown at it.
For most COVID-19 does not pose significant risks, but people with lyme disease and other tick borne infections suffer. Government needs to wake up to the Lyme pandemic. It will only get worse as we have more deer population and mild winters that do not slow down tick activity. Please take this seriously and spend some money and use resources to get a handle on this pandemic.
Gretchen B.
Kentucky
Lucy Barnes
Dear Abby
Good morning! While getting my thoughts together to address the TBDWG, a song popped in my head. It was written by the late John Prine and is titled, “Dear Abby”. And this is your lucky day, because I’m going to sing it to you! But, first…
Pauline Phillips, aka Dear Abby, was a famous problem solver who spoke to millions of readers and radio audiences over the years. Anyone could write to her with their concerns and she would diligently do her research and respond in kind with her compassionate advice.
However, in John Prine’s song, the opposite is true. Dear Abby was no longer providing honest, reliable responses to her readers. It seemed she had a different agenda, and she just didn’t care. Not only did she help no one, she just made things worse with her lame advise.
And ya know, listening to John Prine’s song with that dreadful lack of concern and inaccurate information, I am reminded of the CDC, IDSA, NIH and others who have the power and duty to reach out to millions with solid, honest, life-saving recommendations in order to make their lives better.
But, for over 40 years they’ve stubbornly refused to do so and they fight us every step of the way! Government employees should NOT be ignoring, dismissing or attacking sick patients, doctors, or anyone else for that matter. They should be producing solid recommendations for the betterment of all, at warp speed.
As a result of the agencies perverse mishandling of science and their appalling, self-serving recommendations over the decades, people have been suffering and dying from CHRONIC Lyme disease. We MUST address CHRONIC Lyme disease NOW, because…
It’s a terrible thing for anyone to have to beg for their life.
Dear Abby, Dear Abby
My feet are too long
My hair's falling out and my rights are all wrong
My friends they all tell me that I've no friends at all
Won't you write me a letter, won't you give me a call
Signed- Bewildered
Bewildered, Bewildered
You have no complaint
You are what your are and you ain't what you ain't
So listen up buster, and listen up good
Stop wishing for bad luck and knocking on wood
Dear Abby, Dear Abby
My fountain pen leaks
My wife hollers at me and my kids are all freaks
Every side I get up on is the wrong side of bed
If it weren't so expensive I'd wish I were dead
Signed- Unhappy
Unhappy, Unhappy
You have no complaint
You are what your are and you ain't what you ain't
So listen up buster, and listen up good
Stop wishing for bad luck and knocking on wood
Dear Abby, Dear Abby
You won't believe this
Bum stomach makes noises whenever I kiss
My girlfriend tells me it's all in my head
Bum stomach tells me to write you instead
Signed- Noise-maker
Noise-maker, Noise-maker
You have no complaint
You are what your are and you ain't what you ain't
So listen up buster, and listen up good
Stop wishing for bad luck and knocking on wood
The remaining verse is a bit more risqué than I’d like to recite here, so please Google John Prine and Dear Abby if you’d like to hear the rest. And stop ignoring and denying CHRONIC Lyme disease.
Thank you for your time.
Signed- Dear Abby
Lucy Barnes, Director
Lyme Disease Education & Support Groups of Maryland
Allie Bogmenko
It’s 5:17 pm. I’m writing this from my bedroom floor- where I collapsed after finally getting the energy to stand up and brush my teeth even though I’ve been awake since 10 am. I have to stop seizing first, I have to stop shaking- I have to wait for my arms and legs to work long enough for the task at hand. I don’t venture far from my bed these days- and haven’t for the last 3 years. But I am one of the lucky few Lyme patients- not in the fact that I have recovered from Lyme disease - but in the fact that I have a husband that loves me and knows what I have gone through. He went from my husband to my caregiver. I can now longer drive- the last time I did I had a seizure and drove my truck off the road.See- I was undiagnosed 25 years with CNS Lyme disease ( it’s in my brain, heart and spine)
My diagnosis only came after I woke up paralyzed last april- after years of begging for help and not receiving it. It took 6 months of going Doctor to Doctor as the hospital I was admitted to for 3 days for paralysis refused to grant me a spinal tap. Finally- Halloween 2019- almost 4 weeks after having a needle shoved into my spine- we had an answer- Lyme disease. I had been negative in 7 blood tests for Lyme prior to this. I had been misdiagnosed with 5 other autoimmune diseases- they were testing me for MS.
My neurologist “ had never seen this before”. He didn’t know how to treat me. I had an infection in my brain and spine and no infectious disease doctor would take me as a patient. “ It’s not in your blood” they said. “ But I have a positive spinal tap” I would yell back. My comments fell on deaf ears. It took 7 additional months to find a doctor that would treat me. One even agreed to help me- but when another blood test came back negative she had her nurse call me and tell me “ you don’t have lyme”
“ But I still can’t walk- I have gone blind in my left eye”
“We can’t help you” they would respond.
That is just one chapter from my life- from the story about a bug that most likely bit me as a child- I will never really know- they can only go off of when my symptoms started- I never had a bite mark- but this disease has followed me for 25 years - now I finally have a word for it- Lyme disease.
Allie Bogmenko
Grand Prairie,TX
Marianne Broome
Judy Campbell
- The first episode happened in 2008 where a brain spec was ordered by a prominent Infectious Disease doctor. Patient had been diagnosed by this doctor with Lyme Disease and was under treatment. The brain spec was to inform the doctor and patient of any lesions, etc. The radiologist recorded this patient’s brain of someone with Lyme Disease or Bartonella. The Infectious Disease Director of this particular hospital doesn’t even believe in Lyme Disease and especially chronic Lyme Disease. The confliction, how can that be and why between two hospital doctors?
- The same young adult patient goes to ER at a different hospital with numerous symptoms of chronic Lyme Disease 7 years later. This patient already has had every test under the sun because of so many traveling symptoms to other organs and parts of the body over the years. There have been many valid answers in testing other parts of the body, those are documented. The ER doctor admits the patient due to heart issues they wanted to continue to check out. They decide to bring in a neurologist due to the vast neurological symptoms (migraines, cognitive, etc.) over the years since the illness. The patient’s previous record is already in their hospital records BECAUSE the prescribing physician in the first episode is affiliated with this particular hospital. The neurologist makes rounds to visit the young adult patient. The neurologist “gaslights” the patient despite looking at the previous records so dismisses the Infectious Disease doctor with this affiliated hospital. The neurologist berated the patient and told the patient to seek mental help. The neurologist questioned all the documented symptoms over the years and was very unkind. What? Definition of gaslighting: manipulated by psychological means and questioning their own sanity. This is so wrong on so many levels! The word, “bully” comes to my mind.
- After 40+ years, the CDC and the medical field continue to disregard chronic Lyme Disease. Why? Science should be proving a better and more accurate test for Lyme? Since the ELISA test has been faulty for years, why would any physician ignore the obvious symptoms especially when they are seen? Remember, not everyone gets the bullseye rash or ANY rash. Not everyone has 5 bands (CDC criteria) on the Western Blot test to be positive for Lyme Disease. Symptoms occur later, why? Are doctors trained and told to discredit Lyme Disease patients?
- Why aren’t patients clinically diagnosed for the many symptoms that accompany Lyme Disease when no other tests explain the ailment or the illness? We all know that Lyme Disease mimics MS, Lupus, Fibromyalgia, Epstein Barr Virus, ALS, Parkinson’s Disease and Alzheimer’s. The history of a patient should speak volumes in clinically diagnosing Lyme. We all know that Lyme can attack anywhere in our bodies through the cells and tissues.
- Why isn’t our government helping us? We watch our government get involved with all kinds of diseases but ignore the very one that can be so debilitating and deadly if not diagnosed and treated properly. COVID-19 has been categorized as a pandemic. Chronic Lyme Disease patients have been living in a pandemic for years.
- The Lyme bacteria is a spirochete. Please tell us why we treat syphilis but ignore the obvious spirochete in Lyme Disease? Doctors would never allow a person to go untreated with syphilis or they would die, wouldn’t they?
- Do doctors really believe that fully functional people would want to fake an illness and have a substandard life? Are doctors aware that disability payments go toward medical costs and don’t subsidize any part of living expenses? Most patients will tell you they have been to see at least 10 doctors, if not more, and then referred to psychiatry. A patient can endure years of mental anguish with no answers and more importantly, stay extremely sick.
- Why would any doctor tell a person that Lyme Disease doesn’t exist; it isn’t in the Midwest (or any other state for that matter)? We live on the state line of MO and KS. We have members in our Association who were told that it is in MO but not KS. Seriously? Insects, birds, mice, deer, etc. all travel. We travel. How could any medical professional believe that Lyme Disease only exists on the East Coast? To me, that statement discredits them as a medical professional.
- Why aren’t more doctors learning and researching Lyme disease? What are we hiding?
- Treatment costs . . . most insurance companies will not pay for Lyme Disease treatment after a 21 day course of antibiotics. This is very misleading on the CDC website as a cure. I’m here to tell you that 21 days of treatment is not enough! Many people have to spend thousands “out of pocket” for further treatment. Lyme Literate MDs can’t take insurance because of this. They are the experts and know the disease. The Lyme Community asks that you also not discredit any physician trying to treat chronic Lyme Disease with and without the long-term use of antibiotics. For some, they only feel better with antibiotics. Many folks have to try bottles and bottles of supplements to build their bodies back, I’m proof of that. Getting well is possible, but it takes YEARS of treatment and lots of “out of pocket” money.
Rex G. Carr
My experience and the experience of clinicians that use traditional antibiotics to treat Persistent Lyme disease leaves no doubt that there is chronic infection. If you treat the infection with the correct antibiotics, long enough, everyone improves. I am an expert in patients with chronic pain and fatigue. Board Certified in Physical Medicine and Rehabilitation, practicing for 40 years.
Rex G. Carr, MD FAAPMR
Hanover, NH
Dolores Claesson
The guidelines from the Infectious Diseases Society of America (IDSA) for the treatment of lyme disease and co infections should be tossed in the waste bin. These guidelines are preventing very ill people from obtaining the proper treatment and have caused deaths in a number of cases. People been told to wait and see if their child shows any symptoms before receiving prophylactic antibiotics after a tick bite and the children have died. Treatment guidelines for types of antibiotics as well as duration are also incorrect. I lived with excruciating back pain and sciatica due to tick borne pathogens and with a long course of IV antibiotics, I am pain free. I never saw an EM or bulls eye rash initially but after taking doxycycline an EM rash showed up on my arm. Six months later, I changed the antibiotics and another EM rash showed up in the identical place as the first one. Obviously, Borrelia was still in my system despite the six month short course of antibiotics. I continued to test for co infections and to treat with the most efficacious antibiotics to eradicate all known pathogens that I could ascertain.
We need good research on the panoply of pathogens and the most efficacious medications to address them. Borrelia and some other pathogens can cripple the immune system and we need to figure out how to restore the immune system so that we can eliminate the deleterious pathogens. Many with lyme have CVID, aka common variable immune deficiency and our complement system is being thwarted by Borrelia and Mannose binding lectin (MBL) deficiency is common. MBL is crucial for overcoming almost any pathogen. We have read studies on the Asians with NON HIV AIDS and found that they had auto antibodies to interferon gamma. We need a complete study on the immune systems of chronic lyme patients to figure out a cure for chronic lyme and co infections. Lyme patients have low immunity coupled with auto immune issues. I have had people tested for auto antibodies and found them to our thyroid, Anti nuclear, Anti mitochondrial, Anti cardiolipin, Anti parietal cell, Beta 2 glycoprotein 1 antibodies, and others. A study on the auto immune issues triggered by lyme should be a good study to undertake. Because of the immune compromisation, we see the reactivation of all previously controlled viruses and Toxoplasma gondii (if present) and that should be addressed. Our B lymphocytes need to be examined and evaluated. The mistreatment of lyme patients by the Infectious Diseases Society of America will go down in the annals of history as another Tuskegee experiment.
A thorough study on the pathogens in lyme patients and ticks needs to be undertaken. I have found many bacterial infections in those with lyme and see Franciscella tularensis and holartica, Bartonella, Babesia, Ehrlichia, Anaplasma, Tick borne typhus, Rocky Mountain spotted fever and other spotted fevers, Chlamydia pneumonaie, Mycoplasma pneumoniae, Coxiella burnetti, parasites, tons of viruses, fungal infections. Opportunistic infections of AIDS patients and transplant patients show up in people with lyme as well. Time to get busy figuring this out and to use the IDSA guidelines for lining animal cages at NIH, NIAID, WHO, IOM and Rocky Mountain Labs. We have informed you of the problems with lyme and co infections over many decades/generations and now it is on your conscience to do something constructive about this world wide issue. One fed up and thoroughly disgusted lyme patient.
Dolores Claesson
William Clerico
I suffered for 5 years and spent thousands of dollars on treatment attempts to combat chronic Lyme and accompanying co-infections. I went through long periods of being unable to work due to diminished cognitive function; extreme depression; and constant physical pain. It’s impossible for anyone of moderate intelligence to deny the existence of chronic Lyme with so many people suffering from the same chronic symptoms. Our government agencies need to take this widespread health issue seriously and invest in comprehensive diagnostic approaches and treatment.
I suffered for 5 years and spent thousands of dollars on treatment attempts to combat chronic Lyme and accompanying co-infections. I went through long periods of being unable to work due to diminished cognitive function; extreme depression; and constant physical pain. It’s impossible for anyone of moderate intelligence to deny the existence of chronic Lyme with so many people suffering from the same chronic symptoms. Our government agencies need to take this widespread health issue seriously and invest in comprehensive diagnostic approaches and treatment.
William Clerico
Lincroft NJ
Morgan Clingenpeel
DJ
Madison, WI
Doreen
Patricia Fierre
Christina Fisk
Wendi Gschwind
Hello, I have Chronic Neurological Lyme Disease. I was diagnosed in 2010. Looking back at my medical history and symptoms, I have been infected for about 30 years! Finally found a Lyme Literate doctor in August 2011 and started treatment. My life was ruined. I had to retire from my State government job at 43 years old. Lost my place to live, almost lost my car and lost my friends while extremely sick and treating this horrible debilitating disease. I was in treatment continually for four years before I entered into remission. I have currently relapsed for a second time and have been in treatment for four months so far. The last time I relapsed, it took a year and a half to reach remission.
Please realize the seriousness and effects of this disease. This is not political, it’s people’s lives! Lyme patients need insurance coverage for Lyme treatment, accurate testing, and specific drug therapy.
Thank you.
Wendi Gschwind
Forest Hill, Maryland
Lynne M. Halley
To all members of the Tick-Borne Disease Working Group,
I am a veteran of the United States Navy. I served 16 years before being medically retired. I started as enlisted (E-5 my highest rank) for over 8 years and became an officer (O-3E my highest rank) for the rest. I moved to Dayton area upon leaving the Navy to be close to a base (Wright -Patterson AFB) and VA (Dayton VA), so I can get healthcare for me and my family. There is an Air Force female fighter pilot, Col Nicole Malachowski, first female thunderbird pilot, who testified for the first hearing about what happened to her when she started getting sick. My story is not too different from hers.
Starting July 2016, I began having numerous odd symptoms that no doctor could figure out what was wrong. I saw countless base/VA/ER doctors trying to get help because I did not know why I had so many strange symptoms and pain. I was given numerous diagnoses between close to 20 doctors. Fibromyalgia, migraines, unknown rash, overactive bladder, joint pain from arthritis and others were among the diagnoses. I was 45 when all this started, but I felt like I was 80. After being dismissed once again by the base and VA, I started doing my own research. All my symptoms matched that of Lyme disease. I knew nothing about Lyme so the small bull’s eye I saw in July of 2016, I had no clue it was Lyme, thought it was a spider bite. My husband figured it out by researching my symptoms of:
Ann Hirschberg
Please address chronic Lyme Disease.
It does exist and people are suffering long-term effects as well as loss of livelihood, and proper care and treatment, - and hope.
You are there to find ways to help.
Please!
Advocate for decent awareness, and care of Lyme disease since 1990,.
Ann Hirschberg
Rhonda Howdyshell
Just last week another doctor shared with me that it wasn’t possible to have advanced or undiagnosed Lyme Disease. Find that contrary to my own experience. I was only 8 years old growing up in Northern Va when my family thought sending me to camp in the Shenandoah Valley for 6 weeks would be wonderful adventure! It was horseback riding, pond swimming, hiking and outdoor showers and privies were all part of my summer adventure! Then one day a counselor was helping to brush and braid my hair when they found an engorged and embedded tick in my hair. It was a big deal and the nurse had to remove it, using a match to burn and make it come off. When I came down with a disseminated rash a while later—they quarantined me with measles. It was determined later it wasn’t measles. My later childhood was marked by allergy issues which had me on antibiotics often. Later I developed a strange blood disorder where I would bruise and bleed upon the slightest bump.
I moved to the Shenandoah Valley in 1979. Ticks were common place. Most symptoms Drs and I wrote off to getting older. including thyroid disorder, skin mottling, confirmed arthritis (suspected RA) in my hands and feet, and joint deterioration in my hip that required a replacement to walk.
I retired at 62 early, as the cumulative deterioration was making work very difficult. The next spring I found a tick attached to my chest. I had no bulls eye, it was only on 8-10 hours. The subsequent flu, neck pain, and facial paralysis didn’t give me a clue. but a migrans rash that appeared on my calf sent me to the doctor and they diagnosed Lyme based on symptoms (note no blood test was administered! Which means the health dept/CDC didn’t have to count the case as confirmed Lyme). The speaking difficulty (not being able to remember word) and cognitive disfunction got more severe. (Like writing this account would have been impossible.). They gave me 14 days of doxycycline. Cured... NO, so I tried to accept my new normal of no energy, cognitive lapses, and arthritis throughout my body as my lot in life.
Then a friend suggested a LLMD doctor and I went to one near me. The blood tests were done and I tested “wildly positive” for Lyme. Treatment of 28 days of Doxy began and I felt some better. Then a course of two antibiotics followed. The treatment was harsh and I was sick (Herxing) daily on it. But still I felt 60% better and I Was grateful. Then I showed the LLMD the massive bruises on my legs and arms (had this since childhood) and a sore that wasn’t healing. Diagnosis? Secondary Lyme infection .. and this time the doctor tried a new trial - the WEIGMAN protocol. I remember it was just before Christmas and I decided to wait until after the holiday and I was tired of being sick everyday from the meds. The protocol was cheap and effective, It gave me back my life.! It was a pulsed Mindi / Tindi antibiotic that has proven studies that show a complete kill of spirochetes over others that foster the formation of round cysts. (you know the ones that hatch out after the antibiotic cure and then multiply so you stay sick). It included boosting the immune system before starting it, to allow your body to fight along with the meds.
So my advice is:
- Change the CDC recommended 14-28 day doxycycline treatment to Weigman Protocol.
- Recognize that Lyme disease not addressed or under-treated will resurface when your body allows the remaining spirochetes to multiply.
- Encourage doctors to think “advanced” Lyme disease when seeing a patient with diseminated migrans rash, joint pain, thyroid disorders, MS, Parkinson like symptoms and temperature of 97.
- Order health departments to count all cases of diagnosed Lyme even without a blood test (you see the test is so unreliable docs aren’t bothering to do it) - so we have no idea the number of cases. Keep in mind over a million dogs are diagnosed every year in the US.
Rhonda Howdyshell
Global Lyme Alliance Education Ambassador
Shenandoah Valley of Virginia
Infectious Diseases Society of America (IDSA)
- “Recommend that if the CDC posts any Lyme disease treatment guidelines, that they include guidelines on persistent Lyme disease.”
- IDSA continues to support the use of evidence-based treatment guidelines to improve patient care and the management of Lyme disease. Epidemiologic studies to evaluate currently undefined or poorly defined entities, such as persistent Lyme disease, should be considered. IDSA urges that any guidelines posted by CDC be based on well-designed clinical and experimental studies on Lyme disease and other tick-borne diseases reported in peer-reviewed scientific journals in order to produce the best outcomes for patients and prevent unnecessary harm.
- “Recommend that the VA continue with Recommendation 8.4 from the 2018 Working Group report, “Commence study of tick-borne disease incidence and prevalence of Veterans and eligible family members” and additionally:
- Establish and update efforts on tracking and investigating the prevalence of Lyme and other tick-borne diseases; and
- Establish and update efforts on tracking and investigating the prevalence of Lyme and other tick-borne diseases; and
- Make educational modules available to practitioners.”
- IDSA continues to support the study of incidence and prevalence of tick-borne diseases in all populations. This recommendation presents an opportunity for the Department of Veterans Affairs to study veterans and their families to better inform patient care and management of tick-borne diseases for this population.
- “Recommend that the NIH create one or more study sections composed of members whose expertise is human clinical diseases and their pathogenesis and immunity, not just basic science, to evaluate applications focused on practical impact on human health related to tick-borne diseases.”
- IDSA supports diverse and inclusive study sections to improve the quality and breadth of research into the human health impact of tick-borne diseases.
- IDSA supports diverse and inclusive study sections to improve the quality and breadth of research into the human health impact of tick-borne diseases.
- “Recommend that NIH receive additional funding, which must be dedicated to study Lyme disease, including persistent Lyme disease, and other tick-borne diseases and conditions; NIH to encourage researchers to apply for these studies.”
- IDSA continues to support additional funding and research to better inform the diagnosis, pathogenesis and management of Lyme disease and other tick-borne diseases and supports clinical trials and epidemiology studies designed to better understand these diseases.
- “Recommend that the DoD enhance communication and inter-agency collaboration to study tick and tick-borne diseases.”
- IDSA supports continued inter-agency collaboration in the study of tick-borne diseases.
Francis Ingemi
Jean
Andrea Jackson
TBDWG:
The Lyme community is very disappointed by multiple actions, or lack of action, by this year’s TBDWG voting members. These include the following.
- The TBDWG leadership assigned Shapiro, known to work AGAINST the interest of Lyme patients for DECADES, not only to the committee in a voting role, but a role that was meant to be reserved for a patient advocate. His placement on the committee ABSOLUTELY gave the feds total control of the committee’s nature and products. Patients were VERY VERY VOCAL about their displeasure with Shapiro’s assignment to the committee and we were ABSOLUTELY IGNORED- again. Why would patients have any faith whatsoever that the TBDWG would produce anything that would benefit them, future patients, and finally an un-manipulated and un-corrupted future for Lyme medicine?
- A fed even cast Shapiro’s vote for him. Is it that he would know how Shapiro would vote as he was placed in a patient vote so feds totally control the TBDWG?
- Why else besides seeking control would a person known to be in such disregard by patients be put onto a committee despite the patients’ protests?
- The history of Lyme disease medicine is filled with such corruption and manipulation that yet another “oops” or “mistake” can not explain this great insult to Lyme patients by a working group that is suppose to work FOR the patients. (There is NO way that it can be said that Shapiro was just a “bad tasting medicine” – one that was/is actually good for the patients).
- “Oops” or “it was an innocent mistake” can not explain- how those in charge of selecting members could possible not know Shapiro was one of the top 3 very worst selections for committee members if patients’ concerns were of any concern.
- “Oops” or “it was an innocent mistake” can not explain - how those in charge of selecting members would think there could be any justification for absolutely ignoring the protests that patients loudly ‘voiced’ when the patients learned Shapiro was going to be possibly placed on the committee (it was not done in an open way – not open whatsoever - and protests were heard before the placement was finalized- TBDWG leaders still put Shapiro in to take a vote away from patients.
- This move by TBDWG started this teams’ work off with a very loud indication that the voting membership would not be working for the benefit of patients- but instead be working to continue to cover up for decades of Lyme medicine corruption and manipulation. Watching the voting members argue against and vote down very good subcommittee recommendations by using very faulty and incorrect logic and information has reinforced to patients that Shapiro's placement on the TBDWG was certainly not for the betterment of Lyme medicine or the lives of Lyme patients.
- The TBDWG completely ignored the Bay Area Lyme study published this past year that shows the required CDC Lyme test gives false negatives to 71%? That is 7.1 out of every 10 tested.
- Patients and Lyme Disease doctors have been ignored for decades when they have reported that the testing fails.
- TBDWG committee members have even said this year that they don’t see that there is anything wrong with the CDC-required testing.
- The failings of the CDC-required Lyme test combined with the CDC telling doctors not to test (only in “high incident states” which, due to CDC’s other manipulations, means CDC ensured testing has only occurred in the states in which Lyme first appeared) . This equals – CDC has/ has had a No Test, Bad Test Agenda.
- This No Test, Bad Test Agenda has resulted in and continues to result in:
- MILLIONS OF PATIENTS WITH LYME DISEASE Have been/ are TOLD THEY DO NOT HAVE LYME WHEN THEY DO!
- Millions of patients being told they NO LONGER HAVE LYME WHEN THEY DO! CDC has pushed FALSE STATS for decades- Stats based on the results of CDC’s No test, Bad test agenda (requiring a failing test (71%!) & testing has been greatly influenced by doctors being discouraged & taught for decades- don’t test).
- So many/most/all(?) CDC stats about Lyme are false
- Such as - where Lyme is and where Lyme is not – they don’t know.
- Such as how many people become disabled from Lyme (how do you know if you don’t even know how many have or who has Lyme?).
- Such as how many people get an EM rash
- Such as Is Lyme passed from mother to child
- Such as is Lyme passed between partners
- Such as does the blood supply need to have accurate Lyme and co-infection testing applied to it to avoid giving non-infected patients Lyme and co-infections (why would that NOT be an issue given many have not been tested for the last ½ a CENTURY and of those that were, 71% were told they didn’t have Lyme or didn’t STILL have Lyme when they do!)
- Such as symptoms or effects of Lyme that the CDC pushes as not-Lyme.
Its inconceivable that a working group that’s to represent patients would ignore such an important study as the Bay Area Lyme study that shows the CDC gives false negatives to 71% - showing 7.1 out of every 10 tested were told they don’t have lyme when they do, when known cases are also very low because doctors don’t even know they should test for lyme.
- Even after the 71% failure rate of CDC testing was published, the CDC representative on the TBDWG stated that acute Lyme cases matter more than persistent and that they matter more because there were more acute cases? When 71% of patients have been told they don’t have Lyme when they do - for DECADES (and those were just those who were lucky to get tested after CDC pushed doctors not to test for decades) – there are obviously NOT fewer persistent cases! Lyme doesn’t just “go away!” And when Lyme is not identified, the effects are very severe (NOT LESS IMPORTANT THAN ACUTE CASES!
- No fed-TBDWG member questioned the CDC about their statement of - there being more acute cases than persistent cases and those acute cases matter more (Pat Smith objected to the latter at least, but no committee feds did). If there are only 1 or 2 TBDWG voting members who can see how VERY incorrect that statement is, the others should not be appointed to act like they are representing patients’ best interest or seeking to further Lyme medicine. The others should not be allowed to continue the corruption and manipulation of Lyme medicine- a practice that has ensured millions become sick and disabled while the HHS and CDC ignore patients and their doctors. They have ignored patients and doctors while 1) suppressing all valuable research that points to the federal corruption of Lyme medicine and 2) ensuring no advances in Lyme medicine is made and 3) suppressing any research, information, and outreach that shows that the Lyme myths they have pushed for decades now are found to not be true.
- The federal voting TBDWG members continue to vote against very valid and good recommendations that would actually Finally make a difference to the lives and health of Lyme patients and the progression of Lyme medicine.
- One example of this is after the CDC-rep on the TBDWG kept saying the CDC can’t support providing VALID and TRUE information that would educate doctors about persistent or longterm Lyme impacts. So, they can’t provide information that would FINALLY provide accurate Lyme Disease information, including recognizing the health consequences of Lyme that they have pushed (for decades) don’t exist (when their doing so cost Lyme patients their health, disability insurance, social security disability, and the privilege of belief by family, friends, and the medical community)? Even though for decades they provided IDSA guidelines on their website- guidelines that were and still only address acute Lyme. The rationale of the CDC as to why they can’t provide this educational information: “It will confuse doctors."
- Lyme patients don’t believe the CDC’s other excuses for not being able to provide educational information about persistent lyme given the last 50 years of corruption & given the main reason the CDC provided was “It will confuse doctors.” When the CDC, HHS, and other federal members voted against several education-oriented recommendations prepared by a subcommittee with more experience and less ulterior motives than themselves – patients concern that Shapiro was added to the TBDWG to give the feds voting control of TBDWG were confirmed.
- How are patients suppose to accept that a lame excuse like “it will confuse doctors” is what is keeping us from finally having the medical community educated about the truths ‘of Lyme’ after decades of CDC mis-information and mis-education?
- The federal TBDWG voting members (plus Shapiro) have repeatedly ignored pleas from patients to ‘please finally investigate and put an end to the corruption of Lyme medicine!’
- For federal members to just express there is a need to focus on the future and not try to deal with the mistakes of the past is 1) a cop out and 2) ensuring the mistakes (aka corruptions) of the present and the past are going to continue to corrupt Lyme medicine and keep it from advancing- as they have for ½ a century!
- Lyme patients know the same individuals have been controlling and manipulating Lyme for the last 50 years.
- Lyme patients know that the case definition that defines “what Lyme is” was altered for the sake of a bad and failed vaccine – and was never fixed after that vaccine failed (because then the corruption (case def changed) would become more obvious?).
- Lyme patients know that testing and guidelines were altered for unscrupulous reasons. (Anyone who doesn’t know that can review the Torrey Lyme case- which involves allegations of 6 ‘researchers” and the IDSA (yes the same org that prepared the guidelines that CDC for decades) being PAID by health insurers that did not want to pay patient claims. Patients also know that 4 insurers are actually settling in this case! Why has this been ignored by the TBDWG! It shows that all the supposed Lyme “facts” were not pushed because they were true but because doing so saved health insurers money as the myths made/make it so they do not have to pay for Lyme patient treatment!
- Lyme patients know that a man who should have been convicted of WWII war crimes was in charge of a bioweapons lab that did research on tick borne diseases after WWII and the senate conveniently decided that the public and patients would not learn what was done to and with Lyme disease in that war criminals labs.
WHY HAS THE TBDWG NOT CALLED FOR ANY INVESTIGATIONS ON ANY OF THESE THINGS? If its claimed these things are not true, still- call for them to be investigated so VALID proof of their being false (or actually true) can be shared with the lyme community.
Patient’s want the TBDWG to call attention to the fact that for a ½ a century, the HHS and CDC has:
- ENSURED that millions go undiagnosed and become very sick and disabled, have to live in pain and extreme discomfort most minutes of every day, for years, have their health destroyed by Lyme;
- ensured patients don’t learn they have Lyme until its too late;
- ensured Lyme medicine remains unable to treat or cure Lyme since the CDC and others have suppressed research and treatment for decades);
- ensured patients lose their ability to work and support their families, lose important relationships and self-identity and respect, and become ostracized by the public and the medical community;
- all thanks to CDC propaganda – their pushing false theories and studies about Lyme being “rare and easy to cure”- which it seems, based on the Torrey Case, has been pushed so big health insurance companies don’t have to pay Lyme patients health claims.
How do patients have any faith in a working group that wants to and continues to ignore the very forces which have corrupted and manipulated and continue to corrupt and manipulate Lyme medicine? The consequences of the TBDWG ignoring the present and past corruption of Lyme medicine are, NO REAL ADVANCEMENT of lyme medicine are going to result from the TBDWG reports to congress.
I am a Lyme patient. I went 7 years without a diagnosis and without help. I am now 10 to 12 years into living and suffering through Lyme’s impact. Lyme destroyed my immune system, exactly as whistleblowers have explained ‘is what Lyme does’. Why does the CDC, HHS, etc, or now the TBDWG, not listen to the informed whistle blowers and actual lyme experts and doctors with years of experience with thousands of patients? Why do they not listen to the patients themselves? Letting us send in comments apparently results in no benefits for us – just provides false hopes for a few.
I know from a decade of personal experience that Lyme does destroy whatever system or organ it gets to and eventually the immune system. That IS WHAT LYME DOES. How is it that the so called federal agency experts are allowed to continue to deny that is what Lyme does and that Lyme is not rare, not easy to cure, and by no means only a slightly inconvenient illness. Based on my own personal experience, Lyme eventually makes the immune system deficient and what is left of it “goes crazy” and causes many different symptoms that doctors who have only heard the CDC misinformation for years are only confused by. Once Lyme has damaged the immune system to a certain extent, the damaged immune system sends pain signals, yet no federal TBDWG member knows or admits this. How many painful illnesses are actually caused by Lyme and its impact on organs, systems, and/or the immune system? There are several God-sent immunologists and other specialists who understand immunology and Lyme’s impact on the immune and other systems. Those doctors aren’t hiding under a rock. For years, they and patients have been telling the HHS and CDC about their knowledge, and just as the CDC and HHS have ignored us, so too is the vote-controlling portion of the TBDWG.
Patients are multiplying. We are many. And as we grow in numbers, we grow in strength – the strength to convey to the public how corrupt Lyme medicine and politics have been for the last 50 years. With the corvid 19 pandemic, more and more people are understanding the corruption of the medical-government arena. Those people are listening, and we are talking. If any potential whistleblower is actually reading this comment- PLEASE blow that whistle, please do the right thing, be on the right side of the history of Lyme medicine- the truth will be coming out soon. The manipulation of the 2020 report by those controlling the TBDWG will not be allowed to go un-exposed.
Andrea Jackson
Weld County, Colorado
Bryan Jones
Five years ago I was visiting a local state park measuring trees for a class I was taking at a local university. A few days later I found a tick attached to the back of my leg. I pulled it off and thought nothing more over it. Little did I know that would be the end of "normal" life as I knew it. Previously, I worked as an Intelligence Analyst for the U.S. Air Force/TN Air National Guard. Persistent Lyme symptoms forced me out of full time work two years ago. Eventually it forced me out of the military and work altogether about a year ago.
It took many months for me to get diagnosed and treated with the standard CDC approved length of Doxycycline. Continuing symptoms after led me to seek a LLMD. Since then I have treated with long term antibiotic therapy, herbs, and most recently Disulfiram. Improvements have either been short lived or minor. Continuing illness forces me to look into unapproved, expensive, and potentially dangerous alternative treatments.What other choice do I have? The government's refusal to recognize persistent Lyme has created a situation where patients are forced to pay out of pocket for treatments that have a high potential for failure with money they don't have.
Because of persistent Lyme the U.S. military lost a talented Intel Analyst. Because of persistent Lyme a life has been devastated by illness and financial stress. How many similar stories exist in this nation? Please start funding research towards better diagnostic tests, treatments, and insurance coverage for those ill with persistent Lyme.
Thank you
Bryan Jones
Nashville, TN area.
Jennifer Kenley
Laurie
As a Social Worker, I have a deep appreciation for evidence-based practices, peer-reviewed research, and the importance of providing people with the tools needed for self-advocacy, self-determination, and empowerment. I am also keenly aware of the subtle nuances that can be conveyed through written and verbal communication, especially as it relates to trauma-informed practice.
Overall, I believe our society has adopted a somewhat disdainful perception of Lyme disease, which has a significant impact on the mental health of people with Lyme disease. After countless experiences of invalidation, not only from individuals, but also from medical professionals, the media, and even the CDC and NIH, people with persistent Lyme disease are aggrieved but weary. We can barely muster the energy to advocate for ourselves, let alone make a simple request: please stop marginalizing us; we need acknowledgement and assistance.
The ongoing debate about whether persistent Lyme disease is “Chronic Lyme” or “Post-Treatment Lyme Disease Syndrome” is counterproductive and merely perpetuates the “Lyme Wars”, placing undue burdens upon patients. The debate about long-term antibiotic treatment is similarly ineffectual, especially in the absence of alternative treatment recommendations.
There is currently no information regarding treatment of any form of persistent Lyme disease or Post-Treatment Lyme Disease Syndrome on the CDC or NIH websites. In fact, the overall tone of these websites seems to dissuade people from educating themselves about their symptoms and experiences, rather than providing resources, information, and support. This seemingly simple act of exclusion possesses a more sinister subtext: people with persistent Lyme disease symptoms do not deserve to remain informed, retain the ability to engage in thoughtful discourse with their medical professionals, or actively participate in their treatment decisions.
The NIH website mentions PTLDS briefly, acknowledging that a minority of patients may continue to experience symptoms despite showing no evidence of active infection, but does not provide any additional information. While the NIH published a great deal of information in their 2019 report, including a detailed list of recent advances in scientific research, the only mention of persistent Lyme comes in their acknowledgement that ongoing infection cannot definitively be excluded. If a layperson were to visit the website in search of information, they would not find any helpful resources. However, they would quickly find themselves inundated with information and resources regarding the dangers of long-term antibiotic treatment. The NIH website refers to long-term antibiotic treatment as “unhelpful and dangerous” but does not provide any information regarding alternative treatment options for persistent Lyme disease.
The CDC website is even more disheartening. The website states the cause for PTLDS is unknown and there is no proven treatment for PTLDS. However, there are dozens of links to articles and research studies outlining the dangers of long-term antibiotic treatment. The first article, which immediately catches the eye, is titled Internet-Based Self-Diagnosis of Lyme Disease Caused Death in a Young Woman with Systemic Lupus Erythematosus. There is also a brief vignette video titled Feeling Worse After Treatment? Maybe It’s Not Lyme Disease, in which a man named Robert discusses the impact of being misdiagnosed with Lyme disease. This video seems especially thoughtless and insensitive, given the number of Lyme disease patients who experience prolonged suffering due to years of misdiagnoses.
The choice to exclude information, resources, and treatment recommendations for persistent Lyme disease from the CDC and NIH websites, and to instead provide a variety of reasons to invalidate “Chronic Lyme” and long-term antibiotic treatment, is painfully obvious. Rather than spending valuable time and energy vehemently denying the existence of continued active infection or denouncing the efficacy of long-term antibiotic treatment, why not focus on the facts that are evident:
- Each year, approximately 300,000 people are infected with Lyme disease and co-infections (https://www.cdc.gov/lyme/stats/humancases.html).
- Approximately 10-20% of treated patients continue to experience symptoms of fatigue, musculoskeletal pain, and neurocognitive impairments (https://www.nejm.org/doi/full/10.1056/NEJMe1502350).
- Therefore, each year, approximately 30,000-60,000 people continue to experience persistent symptoms of Lyme disease and co-infections.
Unfortunately, I am one of those 30,000-60,000 annual cases of persistent Lyme disease. For the past decade, I have experienced debilitating symptoms of fatigue, joint pain, neurocognitive impairments, weakened immune system, and many others. Last year, my symptoms became so severe that I had to quit my job. Like many others, I have been closely following the actions of the TBDWG from home.
Excluding persistent Lyme disease in the work of the TBDWG goes against the very mission of the TBDWG: to provide expertise and review all HHS efforts related to all tick-borne diseases, to ensure interagency coordination and minimize overlap, and to examine research priorities.
If some form of persistent Lyme disease is not included in discussions of the Tick-Borne Disease Working Group, hundreds of thousands of people with Lyme disease will continue to go unheard, unrepresented, and unvalued. People who have been suffering for decades will hear your message loud and clear: we still do not believe you; your experiences are not valid.
Laurie
Colorado
Melissa Leavell
I have probably had tick-borne disease since I was born, but I led a fairly normal life from 1952 until 1998. At that time I became disabled with chronic Epstein-Barr, and had to discontinue my career as an Environmental Scientist. Treatment with antivirals did not help very much, but tens of thousands of dollars spent on several types of alternative treatments enabled me to have a few productive hours most days.
Around 1998 I got a laptop computer and began to read research on the symptoms I was experiencing. I persuaded an open-minded doctor to test me for several pathogens that could be the cause and tested negative for them all except lyme disease. I got some treatment but several months of antibiotics was not very helpful. An Infectious Disease specialist persuaded me I didn't really have lyme disease, and I stopped treatment for a couple of years.
Another doctor tried a different type of lyme test, and that was positive too, so I went back on antibiotics for several years, with some improvement, but not a cure. I eventually spent several thousand dollars on a famous lyme-literate doctor, who wanted to verify the lyme for himself, and also test for some other tick-borne infections. The lyme PCR of serum was positive, although there were only a couple of positive bands on the western blot. He considered them significant, and since a positive PCR is the gold standard for diagnosis of ANY pathogen, he diagnosed me with lyme. He also diagnosed babesia duncani based on an antibody test. A few years later I also tested positive for bartonella henselae.
Many years on antibiotics and antimalarials did not produce a cure, but at least I haven't deteriorated or died like so many others who couldn't afford to treat their lyme.
How the doctors on the Working Group who deny the existence of chronic lyme can continue to do so in the face of so much evidence is something that brings to mind words like evil, immoral and corrupt. You have ruined tens of thousands of lives and caused immeasurable suffering. I doubt anything I could say would influence you but I wanted to add my disapproval of your work to the thousands of others who like me, are home in bed, in pain, and exhausted. Shame on you!
Melissa Leavell
Chicago, IL
Amy LeBoeuf
Jennifer Leon
I have been misdiagnosed since age 5. At the age of 5 (1975), after quite a bit of time, complaining to my mother about the pain in my ankles as well as always having her or ANYONE rub my body and always asking them to rub harder, my mom finally took me to see a doctor. I remember the exact spot I was standing when she told me. It was outside, I was standing by our back porch in Fredonia, Pennsylvania. I remember feeling relieved, excited and finally taken seriously.
This started with all kinds of tests, which resulted in me staying in the hospital for 2 weeks during my kindergarten days. I was poked daily with all kinds of tests. One needle I'll never forget was the one in my ankle. I. remember the nurses explaining they wanted to see if any fluid came out. That needle hurt so bad and I still have the mark in my ankle. Well, after being in the hospital, crutches, casts, and I can't recall the time after that, I was finally diagnosed with Rheumatoid Arthritis and told I would grow out of it.
Fast forward throughout my teenage days of cheerleading and sitting out games b/c I could not function, or not participate in other events because I was in too much pain. Then heading into college, where again, as a cheerleader, sitting out games and spending days in bed because I ached so badly.
Fast forward again when I would start my career. My first career was banking. There were days I couldn't even move my hands to type on the keyboard. Interestingly, I still speak with my boss back then and we discussed this and she remembered how much pain I would be, and how others would help close out my drawer because I hurt too badly.
Throughout my young adult life, I continued to have pain - flare ups. To me, I thought it was just arthritis. This was before google, but, I would read RA articles or listen to others with the same diagnosis (typically over the age of 65), my description was different. But, I continued to see Rheumatologists after Rheumatologists and they would continue to hand me every NSAID on the market. Nothing worked. By the way, the minute you would tell a general practitioner you were diagnosed with RA, they immediately send you to an RA specialist. While several RA Specialists were perplexed, I'd get the response "Well, you can be symptomatic without the bloodwork really showing it... here's another drug to take". I then was sent back to my primary care physcian who would then go on and try all the latest anti-drepression and anxiety meds. I remember telling her "Hmm, I don't feel depressed", but, I got prescribed whatever the latest pharma rep pitched in the office. None of this changed the tingling in my hands and feet, the full body aches, the direct pain in my hands and ankles, the flu like symptoms, fatigue.
As I approached my late 20s, I gave up on all doctors and frustrated that no one could tell me what was wrong with me - other than RA, even though nothing I read or heard sounded the same. I'd continue to have flare-ups, missing work, not able to lift my son out of the crib and other things I couldn't do because of the pain. I used to tell people "Just cut off my legs and arms and the act of cutting them off would actually feel good". During this time, I moved from Pittsburgh to Yardley, PA, until 2010.
Now with my husband and my two kids, (4,9), we moved from Yardley, PA to Parker, CO. My pain increased over the next couple of years - again - the same flu-like symptoms, the aches, the tingling and fatigue. Until 2012 when I couldn't get out of bed.
I was typically outgoing, energetic (when I wasn't flared), and would go the minute I had the chance to never leaving my bed. I had some work trauma happened which led me to a therapist with MS. I explained to her that I had to sit walking up our stairs to the 2nd floor 1/2 way up b/c it felt like I couldn't get air into my lungs. I thought it was altitude or 'old age' (42 at the time). I was on my journey again to figure out what was wrong - and yes, I went to see another RA specialist, who confirmed that I in fact, did not have RA, and pretty much assured me that she didn't believe I ever did. This functional medicine doctor who the therapist referred me to (bc she had other patients go there when other doctors had no answers and go them).
The first appointment was $500, plus $5000 for the next several months to figure out what was wrong. This amount didn't include supplements and other testing. When the doctor pieced things together and learned I was from Pennsylvania, he immediately recommended doing a lyme test. After $800 plus an additional $400 for co-infections, my results came back Igenix positive. I was diagnosed with Borrellia, Babesia and Bartonella.
This doctor did not treat lyme, so I had to search for someone that would. I got on the waitlist for the 2 MD/DO's in Colorado. But, was able to get into [redacted] outside of Kansas City, MO. We began my treatment - along with another $5000+.
I eventually was able to get into one of the physicians in Colorado, [redacted]. With his 3 years of treatment, along with adding other modalities - acupuncture and more, I finally was functioning again. While I knew I'd never get 'me' back, I wanted to and I fought to. I eventually stopped treatment and began maintenance.
I have averaged $10,000/year out of pocket for the first 3+ years of treatment. Since then, I continue to invest in my healing - averaging $500/month in support and supplements. I still have flare-ups - Last week, (June15th) I was bedridden all week. Fortunately, I have a job where I work from home - and I have a boss who also has long-term chronic lyme disease. I've been able to keep my job out of survival to help pay for this disease. I still have all the symptoms, but, my flare-ups aren't as often and I am functioning at 85-90% of capacity.
I beg you to give the attention and support to this disease. Since the age of 5, now at 49, lyme has impacted how I lived. It's a financial burden and it has prevented me to have a fully vibrant life. I've missed everything from career opportunities to my kids events. My kids have had to watch me be bedridden for days, not able to prepare meals or take them to practices. It's not all in my head. While I don't look sick, I am sick. I am thrilled to be functioning again, but it's daily management and maintenance to keep it up.
It pains me to see others going through the same thing, and realizing not much has changed since I was a kindergartener in 1975. We need better testing, better support, known treatment options, insurance coverage and so much more. Lyme and other Tick-Borne Diseases need to have the support, research dedicated to help the millions who struggle daily.
Thank you,
Jennifer Leon
Elizabeth Maloney
The odd behavior of the working group during the April 27, 2020 meeting with regard to the recommendation that “if the CDC posts any Lyme treatment guidelines, that they include guidelines on persistent Lyme Disease” concerns me. For that reason, I offer the following comments in support of the recommendation.
As one of the authors of the International Lyme and Associated Disease (ILADS) guidelines,1 I encourage working group members to study the ILADS guidelines and render their own judgment regarding their validity. The guidelines were transparently produced under the Grading of Recommendations, Assessment, Development and Evaluations (GRADE) system and conform to the National Academy of Medicine standards for trustworthy guidelines and until its recent demise were listed on the National Guidelines Clearinghouse. They were rigorously peer-reviewed and published in a journal not controlled by our medical society. Although faulted by some for making treatment recommendations on low or very low-quality evidence,2 we utilized the same trial evidence as the Infectious Diseases society of America (IDSA)3 but reached different conclusions regarding the strength of that evidence. In our view, their inflation of the strength of the evidence cannot be supported. We are not outliers in determining that the evidence quality was low or very low; other GRADE-based assessments, including the exquisitely detailed National Institute for Health and Care Excellence (NICE) assessments and another by Centers for Disease Control and Prevention (CDC) epidemiologists also found that the evidence was of low or very low quality.4,5
The low quality of evidence reflects the existing evidence base in Lyme disease, which is inadequate. Despite the high incidence and severity of Lyme disease, little research has been done regarding treatment of those with persistent manifestations of Lyme disease. The result has been a stagnant research environment— in the US, only three grants have been funded by the National Institutes of Health (NIH) to assess treatment response in patients who remained ill after a short course of antibiotics—the last was funded over 20 years ago.
It is important for working group members to recognize the growing body of evidence that documents, via positive culture and/or PCR, persistent infection in humans following antibiotic therapy, evidence which is discussed in detail in ILADS’ paper on chronic Lyme disease.6 Working group members should consider the evidence provided by the National Institutes of (Health NIH) xenodiagnostic study7 and the work of Feng et al, which now includes a mouse model of persistent infection, suggesting the need for antibiotic combination therapy.8-10
The value of antibiotic retreatment has been demonstrated in EM trials conducted in Europe and the US,11-16 in the Logigian studies of chronic Lyme disease and Lyme encephalopathy,17,18, and the randomized controlled trials of antibiotic retreatment by Krupp and Fallon.19,20 When considering the findings from the retreatment trials, it is important to note the trials’ limitations - reliance on average treatment effects, small sample sizes (ranging from 37-129), and the exclusion of over 89% of patients who sought to enroll.20,21 Additional issues of trial design and the interpretation of the results have been highlighted by others.22,23 As a result, the trials’ findings and conclusions are not generalizable to most patients seen clinically, and are too small for subgroup analysis which would permit more targeted treatment approaches. While it is true that neither Krupp nor Fallon made a generalized recommendation for IV ceftriaxone in this patient population, both found the improvement in fatigue encouraging and recommended additional studies of less expensive and invasive therapies.19,20 Furthermore, in a subsequent paper, Fallon supported the use of antibiotic retreatment on a case-by-case basis.23
Evidence-based medicine is defined as “the integration of best research evidence with clinical expertise and patient values”.24 In the absence of high-quality evidence, evidence-based medicine holds that therapeutic decisions should strongly consider clinician expertise and patient values.24 The National Academy of Medicine (NAM) reaffirms the role of clinical judgment and patient preferences, as does the widely used evidence assessment scheme, GRADE.25,26 As NAM notes, conflicting guidelines most often arise when evidence is weak, organizations use different assessment schemes, or when evidence developers place different values on the benefits and harms of intervention.26
Such is the case here. Using the same evidence base, the IDSA overstates the quality of the evidence and based on its values provides no care for patients who remain ill. ILADS recognizes the heterogeneity of patients’ prior treatment history, ongoing manifestations, comorbidities and therapeutic responses as well as the heterogeneity of their values and goals but the IDSA does not.1,3 ILADS and NICE guidelines share concerns about the limitations of the current testing, the low quality of evidence, and recognize the role of clinical judgment when assessing whether to treat or to continue treatment.1,4 The ILADS guidelines encourage clinicians to individualize care by engaging in shared decision-making with their patients and to closely monitor patients during retreatment, adjusting therapies when necessary.1 Perhaps this is why only 6% of US patients with persistent Lyme disease report being treated by IDSA clinicians,27 with the rest choosing to be treated by clinicians who are more willing to provide further treatment utilizing innovative approaches.
Respectfully,
Elizabeth Maloney, MD
- Cameron DJ, Johnson LB, Maloney EL. Evidence assessments and guideline recommendations in Lyme disease: the clinical management of known tick bites, erythema migrans rashes and persistent disease. Expert Rev Anti Infect Ther. 2014;12(9):1103-1135.
- Naktin JP. "Late You Come: Legislation on Lyme Treatment in an Era of Conflicting Guidelines". Open Forum Infect Dis. 2017;4(4):ofx152.
- Wormser GP, Dattwyler RJ, Shapiro ED, et al. The clinical assessment, treatment, and prevention of lyme disease, human granulocytic anaplasmosis, and babesiosis: clinical practice guidelines by the Infectious Diseases Society of America. Clin Infect Dis. 2006;43(9):1089-1134.
- National Institute for Health and Care Excellence. [L] Evidence review for the management of ongoing symptoms related to Lyme disease. https://www.nice.org.uk/guidance/ng95/evidence/l-management-of-ongoing-symptoms-related-to-lyme-disease-pdf-172521756184 last accessed 6/4/20.
- Hayes E, Mead P. Lyme disease. Clin Evid. 2004(12):1115-1124.
- Shor S, Green C, Szantyr B, et al. Chronic Lyme Disease: An Evidence-Based Definition by the ILADS Working Group. Antibiotics (Basel). 2019;8(4).
- Marques A, Telford SR, 3rd, Turk SP, et al. Xenodiagnosis to detect Borrelia burgdorferi infection: a first-in-human study. Clin Infect Dis. 2014;58(7):937-945.
- Feng J, Auwaerter PG, Zhang Y. Drug combinations against Borrelia burgdorferi persisters in vitro: eradication achieved by using daptomycin, cefoperazone and doxycycline. PLoS One. 2015;10(3):e0117207.
- Feng J, Shi W, Zhang S, Sullivan D, Auwaerter PG, Zhang Y. A Drug Combination Screen Identifies Drugs Active against Amoxicillin-Induced Round Bodies of In Vitro Borrelia burgdorferi Persisters from an FDA Drug Library. Front Microbiol. 2016;7:743.
- Feng J, Li T, Yee R, et al. Stationary phase persister/biofilm microcolony of Borrelia burgdorferi causes more severe disease in a mouse model of Lyme arthritis: implications for understanding persistence, Post-treatment Lyme Disease Syndrome (PTLDS), and treatment failure. Discov Med. 2019;27(148):125-138.
- Strle F, Preac-Mursic V, Cimperman J, Ruzic E, Maraspin V, Jereb M. Azithromycin versus doxycycline for treatment of erythema migrans: clinical and microbiological findings. Infection. 1993;21(2):83-88.
- Weber K, Wilske B, Preac-Mursic V, Thurmayr R. Azithromycin versus penicillin V for the treatment of early Lyme borreliosis. Infection. 1993;21(6):367-372.
- Massarotti EM, Luger SW, Rahn DW, et al. Treatment of early Lyme disease. Am J Med. 1992;92(4):396-403.
- Nadelman RB, Luger SW, Frank E, Wisniewski M, Collins JJ, Wormser GP. Comparison of cefuroxime axetil and doxycycline in the treatment of early Lyme disease. Ann Intern Med. 1992;117(4):273-280.
- Luft BJ, Dattwyler RJ, Johnson RC, et al. Azithromycin compared with amoxicillin in the treatment of erythema migrans. A double-blind, randomized, controlled trial. Ann Intern Med. 1996;124(9):785-791.
- Eppes SC, Childs JA. Comparative study of cefuroxime axetil versus amoxicillin in children with early Lyme disease. Pediatrics. 2002;109(6):1173-1177.
- Logigian EL, Kaplan RF, Steere AC. Chronic neurologic manifestations of Lyme disease. N Engl J Med. 1990;323(21):1438-1444.
- Logigian EL, Kaplan RF, Steere AC. Successful treatment of Lyme encephalopathy with intravenous ceftriaxone. J Infect Dis. 1999;180(2):377-383.
- Krupp LB, Hyman LG, Grimson R, et al. Study and treatment of post Lyme disease (STOP-LD): a randomized double masked clinical trial. Neurology. 2003;60(12):1923-1930.
- Fallon BA, Keilp JG, Corbera KM, et al. A randomized, placebo-controlled trial of repeated IV antibiotic therapy for Lyme encephalopathy. Neurology. 2008;70(13):992-1003.
- Klempner MS, Hu LT, Evans J, et al. Two controlled trials of antibiotic treatment in patients with persistent symptoms and a history of Lyme disease. N Engl J Med. 2001;345(2):85-92.
- Delong AK, Blossom B, Maloney EL, Phillips SE. Antibiotic retreatment of Lyme disease in patients with persistent symptoms: a biostatistical review of randomized, placebo-controlled, clinical trials. Contemp Clin Trials. 2012;33(6):1132-1142.
- Fallon BA, Petkova E, Keilp JG, Britton CB. A reappraisal of the u.s. Clinical trials of post-treatment lyme disease syndrome. Open Neurol J. 2012;6:79-87.
- Sackett D, Straus S, Richardson W, Rosenberg W, Haynes R. Evidence-based medicine: how to practice and teach EBM, 2nd ed.; Churchill Livingstone: Edinburgh, 2000. last accessed 6/4/20.
- Guyatt GH, Oxman AD, Kunz R, et al. Going from evidence to recommendations. BMJ. 2008;336(7652):1049-1051.
- Institute of Medicine (U.S.). Committee on Standards for Developing Trustworthy Clinical Practice Guidelines., Graham R. Clinical practice guidelines we can trust. Washington, DC: National Academies Press; 2011.
- Johnson L, Shapiro M, Mankoff J. Removing the Mask of Average Treatment Effects in Chronic Lyme Disease Research Using Big Data and Subgroup Analysis. Healthcare (Basel). 2018;6(4).
Danielle Masek
I would just like to say that, as many comments are probably already saying at length, chronic lyme is real. I've had it since I was 12. I am now 43 and cannot work. I've been ill with something from age 12 and now it's at it's worse, thanks to non-existing competent care at that time. I've been waiting years for my disability claim to go through. There are plenty of studies re: chronic lyme...see https://www.ilads.org/
I have nerve pain, bone pain, headaches, dizziness, brutal neck pain, I cannot walk normally, I can never rollerskate or ice skate, or dance again. I've been in treatment for 4 years. This has ruined my life. The only deniers out there are those that have never been through this. And FOR SHAME! We get no insurance coverage for anything, pay many many thousands out of pocket for our doctors, supplements and therapies b/c IDSA is in bed with insurance companies, and we are too expensive. FACT.
I know those personally that have given up and killed themselves as they either cannot take the pain, or are flat broke and cannot pay for treatment anymore, are living in mobile homes due to chronic mold exposure many of us get b/c our immune systems are shot to hell, due to lyme, or die early b/c they got treatment too late, as their sorry excuse for doctors never correctly dxed them with lyme...and lyme gets EVERYWHERE in the body...heart, lungs, brain, nerves, muscles....does that sound like ANY KIND OF LIFE TO YOU? A recent prominent lyme dr has died of heart disease DUE TO LYME, b/c lyme gets into the heart, and he was not dxed in time.
IDSA should BE IN JAIL for all the deaths THEY HAVE CAUSED.
I know of people who have BOTH lyme and cancer (God help them)...they said lyme was worse!
If that has not convinced you, you either cannot read and need to go back to 2nd grade, or have less than 5 brain cells.
We deserve to be heard AND BELIEVED, to be TREATED WITH RESPECT, we deserve to have our competent lyme doctors recognized as healers and not the devil, and to get affordable treatment. We deserve to not be perpetually broke just to stay alive--how can we afford 20k of care when we cannot work? Is there some magic potion I don't know about? B/c eIther we are being ignored, or people actually hearing us are perpetually STUPID!
WE [redacted] MATTER! WE ARE NOT PARAMECIUM. WE ARE PEOPLE. PERIOD. This is an issue of overt murder, denial, and human rights.
If cancer patients were treated this way, the entire world would be on UP IN ARMS. But we are swept under the rug.
Danielle Masek
Woodridge, IL
Winifred Mauga
Tbdwg committee,
Borreliosis does not discriminate; Spirochetes know no boundaries.
It is apparent after listening to virtual meeting #13 and the banter about voting, that the public stakeholders who are suffering the most are represented grieviously.
Borrelia sepsis irreversibly injures every organ of the body.
Ethically and morally one cannot un-vote on chronicity of Borreliosis. Nor can congenital transmission be denied. Babies lives matter.
Have care, concern, and courtesy for generations yet to come by showing dignity to those who are suffering now.
- Review the case definition of lyme.
- Review Dearborn two tier testing fiasco.
- Be honest and knowledgeable.
Your actions speak volumes and should be change for the 21st century views of the viral pathogenic relapsing aspect of lyme.
Here are some interesting links that are pertinent to what a conundrum Lyme and co-infections are.
https://arupconsult.com/content/borrelia-species
https://www.cdc.gov/mmwr/preview/mmwrhtml/rr4807a1.htm
https://www.mdpi.com/2076-0817/8/4/299/htm
Respectfully submitted from the swollen lymph node armpit of Florida,
Winifred Mauga
May12.org Organization
Sean McCloy
As a physician practicing in the endemic tick-borne disease region of Maine, I see patients with Lyme Disease on a nearly daily basis. Fortunately many of them get better with the standard diagnosis and treatment protocol for acute Lyme disease. Unfortunately a subset of these patients have lingering and persistent symptoms. The current medical literature has recently demonstrated the presence of persistent spirochete infection despite short and long-term antibiotic treatment. Many of these patients end up with chronic illness and disability, creating a huge financial burden to the healthcare system as well as tremendous loss in their personal lives.
It is time for the Tick-Borne Disease Working Group to recognize AT LEAST THE POSSIBILITY of persistent Lyme Disease and other tick-borne diseases. It also needs to recognize that the standard of care for acute Lyme disease is not adequate for treatment of persistent illness.
In doing so, this acknowledges the legitimacy of these patients illness, removes some of the controversy among physicians regarding consideration of persistent illness, and opens up financial pipelines for further research that is critically needed to find answers for these very sick patients. Nonbiased, government-funded, large-scale research is what is needed.; I testified before a field hearing conducted by Sen. Susan Collins regarding these complex issues, and she agreed that further research is critical.
Thank you and be well.
Sean McCloy, MD, MPH, MA
Phyllis Mervine
The Great Disillusionment
There was a time in my life that I had great respect for the scientific community, and for doctors, and for our government. I was raised by parents who had a strong sense of ethics and something we called “noblesse oblige,” defined as the obligation of those with entitlements or advantages to fulfill certain social responsibilities. A fancy word for our obligation to try to make the world better for those who are less well off than ourselves. I founded LymeDisease.org in 1989 and have served as a volunteer ever since. I naïvely assumed that people who had risen to the top of the scientific and political world shared those values. I was wrong.
Now, watching the proceedings of the Tick-Borne Diseases Working Group, I am remembering my experiences on the NIH Advisory Committee for Clinical Studies on Chronic Lyme Disease, also known as the Klempner trials. In the early nineties NIH funded the Klempner trial with a $4 million grant and invited me and another patient to be on the Advisory Committee. As patient representatives we suspected we might only be “window dressing,”—there for PR purposes—but we put a lot of time and effort into critiquing the study design, hoping to ensure that the science would help sick people.
From the outset the investigators seemed to doubt that more treatment would help people who had already been treated, although as screening progressed, Klempner appeared to be struck by how sick these patients were. I quoted him in an interview we published in the Lyme Times #20, Spring 1998.
Their complaints are not ‘vague,’” states Klempner, “but, on the contrary, are very quantifiable. These patients are in a condition worse than patients with marked congestive heart failure. They are two and a half standard deviations from normal—among the most deviant of any chronic illness.”
He was one of the first to document this finding, which was later replicated in other studies, including MyLymeData.
Back to the Committee. First, they chose a treatment protocol that was minimal—we thought was doomed to fail for these patients. We argued for more IV but it would be prohibitively expensive, they said. They assured us, “This is the first of many treatment trials.” We got them to agree to add two months of doxycycline to the one month of IV ceftriaxone even though we doubted it would be a game-changer. Our Lyme program officer at the time, [redacted], assured us that they would interpret the results of this study narrowly and not overgeneralize. He lied about that. He also promised future treatment trials, which NIH has in fact funded, with mixed results and though the numbers enrolled are very small.
Subsequent trials have never managed to supplant that fatal first impression created by the massive PR campaign launched by the NIH when the Klempner trial was concluded by the Data Monitoring Board. There really wasn’t enough data to draw any firm conclusions and the study was not designed to settle the question of the efficacy of long-term treatment. It wasn’t even “long-term” treatment, just longer than the standard recommendation at the time. The Advisory Committee was never reconvened to assist NIH in the interpretation of the data, per our mission statement.
Nonetheless in the fall of 2001 NIH trumpeted the results to all the big media – New York Times, Washington Post, etc. and then portrayed the results in equally biased fashion on its website. Letters and protests had no effect. And after 9/11, the issue was buried. Today the website still stands with its headline: Clinical Alert: Chronic Lyme Disease Symptoms Not Helped by Intensive Antibiotic Treatment. [https://www.nlm.nih.gov/databases/alerts/lyme.html]
It could equally well—and more truthfully—have read: “90-Day Treatment Inadequate for Chronic Lyme Disease.” Subsequent to the publication of the study results, patient advocacy groups received reports of denials of treatment to chronically ill people based on this study. Not only that, but the data from objective tests, for example the CSF studies, which might actually be useful, have never been released or published.
I’ll wrap up this story of my first experience working with my government and their betrayal of the patient community. In the end, the Advisory Committee met twice in 6 years. At least one member never came at all. Things were still decided behind closed doors, before meetings, in the proverbial “smoke-filled rooms.” We did not fulfill our mission, and then we were officially thanked and disbanded.
Will the TBDWG serve Lyme patients better than the NIH Advisory Committee for Clinical Studies on Chronic Lyme Disease did? The membership and process irregularities of the second Working Group do not inspire me with confidence.
Phyllis Mervine
Founder and President, LymeDisease.org
Audra Mote
Dear Tick-Borne Disease Working Group,
I have been affected by Lyme disease since 1980, and have been very ill with it since 1998. It took 9 years to get an accurate diagnosis in 2007. Treatments since then to kill the Lyme bacteria have helped substantially, and I have felt much better since 2016, though I still struggle with sleep issues and have permanent food allergies and sensitivities from it.
It shouldn't take 9 years to get a diagnosis. Doctors need to be educated about this disease, how to use the Western blot test, how to recognize the clinical symptoms, and how to treat it long-term to kill the ongoing bacterial infestation.
We need better testing, and we need studies done on treatment options.
Please don't let politics, profit motives, or corruption interfere with this. Much of my life was destroyed by this disease. The pain level is simply indescribable. Please don't waste people's lives in service of money.
Thank you,
Audra Mote
Seattle, WA
Robin O'Rourke
Kathleen Paro
Robin Reich
I need HELP in the Orlando Florida area... Will a doctor please message me if willing and able to assist me with this Babesia created with Lyme Disease. I have had it too long now.....and I am frightened. I want to live a wholesome life as best I can and I can not find a doctor who is legally able to treat me past the 21 day IV antibiotic treatment. Unless I PAY CASH. .. Also,,,, IS AN Infectious Disease doctor LEGALLY ABLE to take care of patients for this (Babesia/Lyme) yet past the 21 day IV antibiotics? IF so , who?? I am having a very difficult time trying to find a doctor who will treat me past 21 day treatment and is able to use my health insurance coverage of any kind. I am going on 5 years with the exact symptoms of Babesia after having been treated for Lyme Disease with an integrative and natural medicine doctor who was guided by Dr Richard Horotwiz's books out of NY. The book entails details and treatments of my disease(s) to the T. I have gone to ANOTHER 2 local infectious doctors here in Orlando, Florida who say they DO NOT treat Lyme Disease. This is SURREAL at this day and age....I don't have $$$ thousands of dollars to treat myself at [redacted] doctors.... Sadly, I can buy a gun but I can not use my $384.00 a month Health Insurance to treat my disease when there ARE treatment options available out there ..BUT ONLY FOR CASH.... Or, am I severely missing something here?
Also, I'm on the back stretch of this thing or things/diseases Lyme or and Babesia...And I am already in debt from treating basic Lyme... 2 years unable to work..(I only made six figures). And yes I have the credit cards I am paying off for that paid for treatment and or living without being able to work...... I am a strong person and I insist on working again....I am working... willing to work...never took charity.... have health insurance and yet... there ARE solutions out there ….documented...but I need large amounts of cash to use them.
Maybe I will try this angle.... Who has about $5,000 to $20,000 to give me to travel and treat my disease because the Health MR. OZ's of our world do not believe Insurance should pay for treatments found for my illness???? Please message me...I will keep all receipts to assure you that that is where the money will go...…And I am an organ donor so science can study this mess.... But.... GOD BLESS AMERICA there are options out there but I have to be wealthy in order to use them!!
I am going on 10 years since my positive Western Blot diagnosis of Lyme Disease… and I do realize Babesia is a co infection... However, I am currently treating myself -no doctor supervision.. Because I choose to pay my mortgage.. and possibly die in my own house without legal professional treatment versus moving into a tent because I had to pay CASH for treatment ... I am not sure if the "Samsara Herbs TICK Immune Support" will treat Babesia or only Lyme Disease...I started to lightly herx after 2 days so it's doing something.. Herx symptoms include morning headaches, eye inflammation/blurry, sweating..anxiety..neuropathy on the entire left side and is now agitated with tingling hot/cold increases..Or.... are these Herbs bringing the Lyme symptoms back that went into hiding verses KILLING these miniature beasts??
Who or where do I go for help? My mind has become boggled or continues to stay fogged with all the internet info and NO SOLID covered health insurance doctors who can legally treat me.
History:
1990- Shirley, New York: Diagnosed Positive for Lyme Disease in Shirley, New York- took Deer tick with me to be tested -No rash - And was found to be pregnant on the same visit... I took the 30 days doxycycline and never thought of it again.
2010-St Cloud, Florida: Diagnosed again Positive for Lyme (Western Blot positive) Bitten by what I thought was a dog tick (much larger than a deer tick) didn't think Lyme Disease ..until I got the classic symptoms of Body and muscles aches, and asked to be tested for arthritis ...then clicked other symptoms together.... severe air hunger... unable to swallow food... depersonalization ...speech impairment, dementia, insomnia, chronic fatigue..severe vision issues...
**Treated with 21 days of IV Rocephin with a picc line--by an Infectious Disease doctor but then told me he was legally unable to treat me further after 21 days of IV ... And I was still unable to function let alone work --and got laid off after being employed there for 15 years - I was told my personality changed....Thank you Lyme Disease - I was now out of job .....
As a single, head of household person, I was forced to use my IRA savings(paid the penalty fees) to pay for health care treatment and living expenses in order to try and help myself to get better to be able to work.
*** Paid cash for service and treatment (approx 2 years) for an Orlando integrative [redact] medicine - I got my mind back ...and was able to work again... However..insurance would not even pay for medication being prescribed..coartem...and I still had or have air hunger ... eye issues and neuropathy... Which I believe and have read can be cured by a few treatments I have researched ... But where ...who has permission and how can it be covered under my health insurance that I already pay for??? I sincerely need HELP... please do not suggest lyme.org or lymedata for doctors referrals...Those doctors on that page are the doctors I listed in [redacted].
Robin Reich,
Still frustrated with my lack of health treatment and insurance resources for Lyme Disease and or its co-infection(s) in St Cloud, Florida
