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                              TBDWG October 4-5, 2022 - Written Public Comment


    

    

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TBDWG October 4-5, 2022 - Written Public Comment








  
  
    

  
      





***This webpage displays the written comments received by the Tick-Borne Disease Working Group for the October 2022 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.***

AlanDel
Bennington, Vermont

I picked up a tick in the spring of 2012 in Proctor, Vermont. I was camping for a weekend range event. I more than likely got it Saturday evening as I washed up after the day's events. I didn’t discover it until the next Monday. I pulled it with tweezers and had saved it in an envelope.

I didn’t get any sign of infection for several weeks. I then developed a red rash, not bull’s eye, over my entire body. After a few days, I noticed what seemed like a half-dollar sized cyst on my left leg. Where I had pulled the tick, but at that time it didn’t connect as due to the tick, it wasn’t the bull’s eye.

Concerned about the rash and cyst like lump, I went to see my doctor. He immediately, on inspection, stated it was Lyme. He put my on a course of antibiotics and took blood samples. Unfortunately, after several weeks, I was unable to find the envelope with the tic. The antibiotics did clear up the rash.

Also unfortunate, my test came back negative. As did several later tests. Over the next several months, I became plagued with various maladies. Knee joint pains, arthritis in my hands, lethargic lack of vigor . . . . because the tests were negative, so it must be something else. I saw one specialist after another, one no problem here after another. An infectious disease specialist tried putting me on Synthroid (a hateful drug). I didn’t let that go on long. I tried an alternate medicine practice. They did a Igenex western blot, again negative. They gave me Vitamin Bs, altho I had told them of my usual daily vitamins.

In the fall of 2012 I decided I needed to get active to win myself back. An avid backpacker, I chose a 3.5 mile day hike up a peak trail I was very familiar with. A good afternoon hike, 3 - 4 hours, ended up being 8+ hrs.

As time went on, it was a cascade. I got to the point my stamina wasn’t enough to keep me at my job. Then I began having lung issues.

There always seems to be other reasons this is happening. My age (75 in 2022), my work environment, the fact I was once a smoker . . .

Before the tick, I had no real issues. I was healthy and very active. Able to carry 60# pack in the Presidential Range. After the tick, it’s been a downward spiral. It seems the AMA and CDC don’t want to face this.

Anonymous 1
Chelsea, Michigan

I am new to Lyme Disease, but 7 days, a break, then 14 days of antibiotics did not resolve all my symptoms. Lyme is fairly new to Michigan, but increasing. Doctors need more education, and there need to be better treatments. Antibiotics do not seem to be very effective. I don’t want to live with this the rest of my life.

Anonymous 2
Massachusetts

It seems clear to me that the CDC Lyme group is highly conflicted. I consider it to be seriously corrupt. It seems clear to me that those involved have subordinated the public's health and well being for their own respective personal benefits. It is long past time to clean house. The existing groups including this working group should be completely dissolved. Everyone who has participated in this abominable public corruption should be permanently banned from ever participating in any public body addressing tick borne ilness including Lyme. New teams should be assembled comprising practicing physicians who have a solid history of successfully treating patients.

It is time to restore control of medical matters to expericienced physicians and clinicians with a demonstrated track record of accuately diagnosing and successfully treating disease. Highly conflicted, self serving, egoistic bureaucrats should be rigorously excluded. If this were other than a public forum, I would direct some choice expletives at those who are responsible for the obstacles which deprived me of the timely diagnosis and treatment which I so desperately required.

Anonymous 3
Tucson, AZ

Dear Working Group,

I would like you to put as much money and effort into TBD as Covid, especially chronic or "post-treatment" TBDs. This will improve millions of peoples lives and reduce the gas-lighting from the medical system. Also, if testing for Covid could be created in a few months, better testing for TBDs is possible as well. Please get to work ASAP!

Thank you

Anonymous 4
Cambridge, MA

Please give funding for research to support better treatments of post-treatment Lyme disease syndrome.   This disease is devastating and often disabling, and deserves large well-designed clinical trials.  This research should be open-minded in considering a wide variety of treatments that come from basic science, doctors familiar with treating the syndrome, and patient experiences.  Thank you.

Anonymous 5

My children suffer from congenital, chronic Lyme disease and co-infections.  Because the Tick Borne Disease Working Group continues to insist that chronic and congenital Lyme does not exist, we have had a very difficult time getting them better. We are not alone.  There are many families with congenital Lyme in this country.

You must recognize Lyme disease, in all of its iterations.  It is unethical that you do not.

Anonymous 6
St Paul, MN

I would like to share some thoughts with you about Lyme disease.

Paula Lipkin from Minneapolis was only 54 when she died from Lyme Disease. A woman from Iowa was only in her early 30’s when she died of Lyme; her heart simply stopped beating. And in the Northeast, little Mindy was only 11 when she died.

Perhaps the best-known case was the Forscher child who contracted Lyme in-utero from his mother who was not aware at the time that she had contracted the disease. Within three weeks of his birth, he began to show signs of significant problems. Little Jamie was finally diagnosed with Lyme, was treated, and often relapsed. They would re-treat, he would be fine for a while, and then again relapse with a complete breakdown of his neurological system. Finally at the age of 6, he died. His parents went on to start the Lyme Disease Foundation.

My personal case included being bitten twice over a period of about 5 years, merely for camping and hiking in the State parks of Minnesota, as noted by the distinctive Deer Tick bite. I first noticed flu symptoms, vision problems, weakness, tiredness coordination problems, and short-term memory losses. It wasn’t long until I did not have the strength or focus to work, affecting our income. And, at times I did not have control of my bodily functions. It was a complete breakdown of my body and to a degree, my mind, because this illness attacks both.

There are a number of serious problems regarding the medical profession’s view of Lyme Disease.

First is the inaccuracy of the current testing; it fails to identify Lyme nearly 50% of the time. An accurate test in urgently needed.

Second is the fight within the medical community itself, which does not understand that this is a long-term illness; it is in the same category as Relapsing Fever,

Malaria, and Trichinosis, none of which are cured overnight and require ongoing treatment.

Third, funding is urgently needed for research regarding this illness, not only for devising an accurate test, but developing effective treatment

After great effort, I was able to find a physician who was able to step up and help me and literally saved my life.

For the record, we are not stupid people. I hold a degree in education, was President of an organization of 800 people for which I was nominated for the President’s Volunteer Action Award, have done grant writing and have had articles published.  My husband is a Summa Cum Laude, was stationed at the Pentagon at one time, and holds 7 patents.

Please listen to those who are in the know. Those who have experienced any situation and are in the trenches with it, know it best.

Anonymous 7
Derry, New Hampshire

Lyme symptoms are varied and devastating and doctors are unaware and dismissive. Testing is inaccurate for people that have long term persistent Lyme disease.

Because of the present stringent inaccurate guidelines for testing and diagnosis, doctors write off and disrespect people who are suffering. The suffering is terrible. Lyme is an unrecognized pandemic.

Why is it unrecognized? Political reasons. Pharmaceutical companies want to profit from treatment, which means they are springing dangerous shots on the public. I learned about the failed Lymrix vaccine causing illness and suffering to those who got it. The new one which is about to be spring on a trusting public is no better.

The corruption and fraud in Govt agencies is causing egregious public harm.

Anonymous 8
Ontario, Canada

To the TBDWG:  thank you for your hard work.  To each participant, a very respectful “thank you”.

The committees have demonstrated that deep knowledge exists amongst scientists and clinicians- and yes, patients- which supports the promotion of treatment, including long-term treatment if required, for persistent disease and illness from tick vectors.

I encourage you act to ensure that patients are treated with the best comprehensive knowledge available, much of which you have reviewed.  We cannot continue to deny the existence of persistent disease and illness, be stuck in historical paradigms, and condemn patients to lives of misery because we are afraid to act.  Please, in the interest of so many who suffer, change the status quo and act. Regardless of the “unknowns” there is already enough demonstrated evidence of disease persistence, co-infection, and multiple, systemic syndromes resulting from infection and ongoing illness to warrant action, now.

I respectfully ask that you forward recommendations for action that will i) see education and further scientific and clinical investigations prioritized with proper funding; ii) prevent clinicians who are treating those with tick-borne illnesses from being harassed for helping their patients; iii) designate these illnesses with the appropriate codes so that that they will be properly covered by insurance, and insist that insurance cover these illnesses; iv) encourage the various government agencies to update the information on their websites more regularly, in respect of emerging knowledge.

The TBDWG has done so much, and indeed the state of knowledge has advanced during the working groups’ deliberations.  You have an opportunity to make a big difference in the health of millions of people not just in the US but worldwide, through your leadership.

Please seize the moment.

Respectfully

Scientist unable to work due to tick-borne illness

Anonymous 9
Ontario, Canada

First as a Mom: 8 years ago my son, Jack, was a healthy 11-year-old boy who played tournament soccer, hung out with friends, went to school, and hardly had a care in the world--and then one day, he wasn’t. His illness began with flu-like symptoms, extreme fatigue, and debilitating abdominal pain. It progressed into widespread nervous system dysfunction with a resting heart rate as high as 160, wide-spread pain, temporary blindness, and other severe symptoms. He went from an athlete to a wheelchair to a hospital bed. He missed over a year and a half of school.

Over two years we saw 40 doctors from 19 different specialties. No-one could explain what was happening to him. I searched my memory for anything out of the ordinary just before he got sick. The only thing I could remember was a tiny scratch from a stray kitten about a week before and a tick that we found in his bed that had hitched a ride inside on our dog. No physician ever asked about exposures to animals or insects, and I didn’t know enough to even think those events could be relevant. Had I been asked about such exposure on a patient intake form, I would have been clued in to think more critically about them.

Eventually Jack was hospitalized for immuno therapy and developed an odd rash that no-one could or seemed interested in explaining. Through my own research we found our way to physician scientist, Dr. [REDACTED], and veterinary internist and vector-borne disease researcher, Dr [REDACTED]. These two gentlemen had been working together for years in a collaborative One Health approach that shares knowledge from the human and animal health worlds.

One Health looks at health through the lens of the interrelationship of human, animal, and environmental health. Using this approach to diagnosis, Dr [REDACTED] determined that our son had Bartonellosis (commonly known as Cat Scratch Disease). Now, after 3 1⁄2 years under his care, our son has almost fully regained his health. I cannot even think what might have happened had we not found this team of doctors and the One Health approach that saved my son’s life.

My concerns as a teacher: What happened to my son could happen to any child in the US. As a K12 educator I realized that my students know nothing about the risks that fleas, ticks and other vectors pose; nor do they know how to protect themselves. According to the CDC, “between 2004-2016, the number of reported cases of disease from mosquito, tick, and flea bites has more than tripled. Lyme Disease cases account for 80% of tickborne disease cases, with children most at risk. Each year, at least 300,000 people in the U.S. are diagnosed with Lyme disease. 25% are children, ages 5 to 9. That’s at least 75,000 children annually. The medical community acknowledges that 5-20% of lyme patients develop chronic symptoms that can be disabling including profound fatigue, pain, and/or cognitive impairment. If this happens in children, not only can these symptoms impede attendance and learning, but these children will be at risk for developing depression and anxiety as they fall behind in school and become increasingly more isolated due to their functional limitations. I have seen this with my own eyes.

As I searched for resources to help teach my students about preventing vector borne diseases, I quickly realized that there isn’t much available; then I figured out why. There is no mention of prevention strategies for vector borne or other zoonotic diseases in our K12 National Health Education Standards. According to the CDC, these standards were developed to establish, promote, and support health-enhancing behaviors for students in all grade levels— They provide a framework for teachers, administrators, and policy makers in designing or selecting curricula, allocating instructional resources, and assessing student achievement and progress.” But the current National Health Education Standards do not take into account the profound increases in vector borne disease that we are currently experiencing which leaves our children incredibly vulnerable.

Now as the Chair of the One Health Education-US Task Force: From my own experience and in light of COVID-19, I strongly believe that students need a more comprehensive understanding of health. That could be accomplished by incorporating a One Health perspective into the National Health Education Standards. The current standards do not explicitly address student education about ticks and other vectors, vector borne disease prevention strategies, nor the conceptual understandings of how our human choices can impact our environment in ways that can directly affect the geographical range of these disease carrying vectors. We want our students to become adults who think critically, who understand factors that increase health risks, and who are armed with disease prevention strategies for life in an ever-changing world. What children learn through K12 Health Education not only protects them now but establishes their attitudes and health habits as adults which they subsequently can instill within their own families. The One Health concept about our inter-connectedness with animals and with the environment could easily be incorporated into the National Health Education standards and into classrooms around the country. Without this action we leave our most vulnerable population--our children-- and future generations at risk.

There is an immense amount of work to be done in research for diagnosing and treating tick borne diseases; but educating students and teachers about tick borne disease is an easy way to help prevent them-- and it must start now!

I would be happy to answer any questions and would welcome a chance to visit with the Joint Committee on National Health Education Standards as well as the Tick-Borne Disease Working Group about what urgently needs to, can, and must happen.

Anonymous 10
Englewood, FL

I am writing to the Tick-borne Disease Working Group to share my experience with Lyme disease and other tick-borne infections.  I have no doubt that I contracted Lyme Disease (Borrelia Burgdorferi) (BB) in 1996 after returning from a week-long trip to the mountains of North Caroline.  Within two weeks, I got extremely sick and was bed-ridden with headaches, stiff neck, fever, chills, ear pain, and extreme fatigue.  I went to my doctor numerous times and she prescribed numerous medicines for a period of four months.  I wondered at the time if I had been bitten by a tick in the mountains. I did not know at the time what the symptoms of Lyme disease so I researched it and found that I was having most of the symptoms.  I remembered that I found a scab on the back of my neck but didn’t think much about it at the time.  After four months, I begged my doctor to please prescribe antibiotics to treat Lyme disease.  Within 3 days, all my symptoms begin to disappear and I was so much better.  Within a month, I began to have aches and pains all over my body.  Usually if one arm hurt in a particular spot, the other arm would also hurt in the same spot.   I remember my knees would hurt.  My head would also hurt. I went to ten (10) different doctors trying to find a cause for my pain.  I was told many times, it was all in my head.  Finally a neurologist at Georgetown University Hospital referred me to a doctor which treated fibromyalgia which he believed I had.  I was diagnosed with fibromyalgia in 1997 and I suffered with pain for three (3) years before the doctor found a medicine which worked for me.  My pain and fatigue were mostly controlled with the medication. Over the years, I continued to have many health issues and have seen probably a hundred doctors for one symptom or another.

Due to my health issues, I retired from the US Government in 2015.  I was determined to find out what was causing all of my health issues.  I began by a process of elimination.  I went to many doctors without any conclusive diagnosis, and finally a Lyme literate doctor in February 2017.  My Lyme doctor did an extensive workup and ran many various tests to eliminate any problems other than Lyme which may be causing my health issues.  My doctor used a specialty lab IGeneX (Igx) as well as the usual conventional commercial laboratories to test for Lyme disease and other tick-borne infections.  My tests from IGeneX came back positive for:   Lyme, Ehrlichlosis,  Anaplasmosis, and Bartonella.  So I went undiagnosed for twenty (20) years.  My Lyme doctor has treated me since February 2017, using all kinds of traditional medications, herbal protocols, etc. but to no avail, I still test positive for all of the above.  My doctor referred me to a well-known specialist at one of the Lyme research institutions;  however, he replied that I had already received extensive prior antibiotic treatment and he did not have any new treatment to offer or ongoing studies of potential new therapies.  His letter to my doctor stated “We hope in the future that we may have research studies to test new treatments, especially for Post-treatment Lyme Disease Syndrome”.  I want to stress to the Tick-borne Disease Working Group that I DO NOT HAVE Post-treatment Lyme Disease.  I tested positive in March 2022, for Tick-borne diseases; therefore I have Tick-borne diseases.  This term assigned to people who have been treated for Lyme disease is insulting and degrading to the ordinary non-medical individual.  If I had been diagnosed with cancer, treated for cancer, and retested positive for cancer; would my cancer be called “Post-treatment Cancer”?  I will answer that question for you, Absolutely Not.

Unfortunately, my tick-borne diseases have continued to wreck havoc on my entire body with probably significant damage.  Over the years, I developed multiple intense sensitivities to sound, light, smells, foods, chemicals, and medications.   Now I have Mast Cell Activation Syndrome (MCAS) which I am sure the tick-borne disease working research group is very familiar.   Now I have allergic reactions to almost everything.

I urge the tick-borne disease working group to include research for long term tick-borne infections.  Most doctors I have encountered over the years, appear to be taught that one treatment of antibiotics will cure Lyme disease and other tick-borne infections.  Doctors need to be taught that in the case of Lyme disease and tick-borne infections, one size does not fit all.  I still have hope that one day there will be a treatment for me.

Thank you for this opportunity to comment to the Tick-Borne Disease Working Group.

Barbara H Knowles
California

I was struck with Lyme Disease in 1986 and have struggled with it all my life including being on treatment today.

Getting diagnosed was very difficult and I have lost time with a life of lost living as well as not being there for my family.

My adrenal glands were completely shut down fighting this disease for 36 years and no one could find a solution until seven years ago.   I remain on this treatment for life as I have aged now to be 84 years old.

I Lost my personal life but most importantly lost life with my children and no ability to be a grandmother as well.  We have lost so much time together because of the disability of Lyme Disease.

Being bed bound and no physician to recognize the disease has been such a hardship and we must change the way the medical establishment is on diagnosing the disease and a way to heal.  Thank you, Barbara H Knowles

Carl Tuttle
Hudson, NH

Member of NH Gov Chris Sununu's Lyme Disease Study Commission

http://www.gencourt.state.nh.us/statstudcomm/committees/default.aspx?id=1515

To all Members of the Tick-Borne Disease Working Group,

For the record, Dr. Wanda K. Jones, Director for Research and Scientific Integrity has come to the conclusion that there is no fabrication/falsification in the negative results connected to more than 700 different blood and cerebrospinal fluid samples from the 129 patients in the Klempner antibiotic trials. “Nothing to see here, move along.”

We have studies proving persistent infection after antibiotic treatment for mice, [1] dogs, [2] ponies, [3] monkeys, [4] cows, [5] iris biopsy, [6] and ligamentous tissue [7] but if you perform a simple Google search [8] for the following statement; “There is no convincing scientific evidence that chronic Lyme exists” you will find the top search results are connected to “elements of academic medicine” involved in the denial of the late stage chronic Lyme epidemic.

Circular reasoning: [9] "Suppress all evidence and then proclaim there is no evidence"

Persistent Lyme infection: 363 Peer-Reviewed Studies [10]

When “evidence-based medicine” has been spun to fit bias agendas and the patient voice has been intentionally ignored who investigates the dishonest science?

Carl Tuttle

Hudson, NH

References:

1. Chronic Lyme in Mice

http://www.ncbi.nlm.nih.gov/pubmed/20718718

2. Chronic Lyme in Dogs

http://jcm.asm.org/content/38/6/2191.abstract?sid=9cb0475c-43f1-4b99-a789-21a90c441f96

3. Chronic Lyme in Ponies

http://www.ncbi.nlm.nih.gov/pubmed/15863289

4. Chronic Lyme in Monkeys

http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0029914

5. Chronic Lyme in Cows

https://meridian.allenpress.com/jfp/article-pdf/54/7/532/1663896/0362-028x-54_7_532.pdf

6. Chronic Lyme in iris biopsy

http://www.ncbi.nlm.nih.gov/pubmed/8106639?dopt=Abstract

7. Chronic Lyme in ligamentous tissue

http://www.ncbi.nlm.nih.gov/pubmed/8240439?dopt=Abstract

8. Denial of the late stage chronic Lyme epidemic

https://medicine.yale.edu/news-article/existence-of-chronic-lyme-disease-questioned/

9. Circular reasoning

http://www.asa3.org/ASA/education/think/circular.htm

10. Persistent Lyme infection: 363 Peer-Reviewed Studies

https://www.dropbox.com/s/wypdcr45cfmq16d/Persistence3.docx?dl=0

Charlie Phillips
Florida

To the Tick-Borne Disease Working Group

My story and journey with Lyme is not that different from others suffering from this horrendous disease. As a child, I had difficulty concentrating in class and struggled in school, I would be plagued with a myriad of symptoms including light sensitivity, migraines, etc.

In the fall of 2011 after seeing countless doctors, looking for additional answers, I was diagnosed with complex-partial epilepsy, which in turn would explain everything that was happening with me. I was prescribed medication which seemed to help, until it didn’t. In 2017, a year after I got married, after waking up and wanting to start the day, I was unable to get out of bed because of the amount of pain I was in. I explained to my wife that I was unable to use my legs. After struggling to get out of bed, I was finally able to get up, but not without the use of a cane. When consulting with the doctor and explaining the pain and what had happened, she quickly assumed that I was after the pain medicine. This could not be farther from the truth, I just wanted answers. Going from being a long-distance runner and athlete, as well as active in my everyday life, I now had to use a cane and wheelchair to get around at the age of 30. To say it was disheartening puts it mildly.

In 2018, I was lucky to meet with a Lyme doctor who after meeting with him just one time diagnosed me with Lyme and its many co-infections, including one that would cause extreme pain. The doctor informed me that the diagnosis of Lyme and its coinfections would explain not just the pain, but also the previous diagnosis of epilepsy and difficulties I had in school. Within a few months of taking antibiotics, I was able to use my legs again and seemed as though I was getting a new semblance of my previous life. The seizures I experienced also decreased on antibiotics.

There are days where I do not feel well, nothing as bad as it once was, but then I go back and think of how far I have progressed since being diagnosed. I now focus on those who are suffering worse than I have suffered, and I want to be able to help those on their journey who want to get answers.

Please, we desperately need funding for those who continue to suffer. We need to get the word out that chronic Lyme disease is a real disease that needs to be recognized by the CDC, WHO and all others that will listen. People, families suffer every day and are often misdiagnosed. Let’s all work together so that there truly is Lyme treatment for all!

Dawn E Whiting
Boscawen, NH

I contracted Lyme sometime around 2009.  No one believed me.  PCPs have a tendency to dismiss complaints.  If the Lyme test is negative, they conclude that one does not have Lyme Disease or any other tick borne disease.  I live in New Hampshire and we are an endemic area.  I go out into the woods and am covered with ticks when I come back out.  I vacationed at a camp this summer and got ticks just sitting on the porch.  They were dog ticks. However, dog ticks do carry disease, as well.  I requested an enterologist send tissue to a Lyme laboratory when I had a colonoscopy around 2012. He refused.  I saw numerous orthopedic specialists and the majority discounted my account of Lyme disease.  One stated that I should be pleased that I do not need a knee replacement.  When I queried what was wrong with my knee then, he had no answer.  A rheumatologist asked when I had the 'rash' in 2019.  At that point I had been bitten by another tick in or around 2017.  I told her about 2 years earlier.  She asked if I still had the rash, which of course I did not.  So she stated I don’t have Lyme.  I had gone to see an allergist at one point when I had unexplained hives.  She did not believe in Lyme.  I was told in 2021, after I had severe multiple headaches, double vision, orientation difficulties, that I had some obscure disease, Pseudotumor Cerebri by the radiologist for the MRI nad MRA, the opthamalogist and neurologist. I did not even fit the criteria for this disease.  The opthamalogist got in my face when I said it had something to do with Lyme and said " This has nothing to do with Lyme".  The neurologist went on to tell me I was going to go blind from the Pseudotumor Cerebri.  She even told me a story about some woman from Africa that she had as a patient who came to her who had already lost her eyesight.

I have seen 2 neurologists in Boston.  The correct diagnosis of what I had in 2021 was meningitis.  It has since caused a second autoimmune disease in my body.  The first is the destruction of my thyroid.  I am on pills for the rest of my life.  The second is Inflammatory Cerebral Amyloid Angiopathy.  These doctors would not talk with my Lyme doctor who was recommending specific treatment best given by them.  They stated that Lyme was 'not active' and they would monitor me clinically.  I guess that means when I fall enough and break a bone, then something will be done.  One of my symptoms is that I am offbalance at times and when I realize it, I am already on the ground.  Do you realize how hard cement is?  Or what it feels like to fall of a porch?  Also, the fellow for one of the neurologist's in my first visit told me that she does not believe in chronic Lyme and would not listen to me regarding my chronic Lyme symptoms.  Because she believes it does not exist.  She is a young doctor.

I currently have an appointment at the end of October in Long Island with a neurologist who treats Lyme and coinfections.  My symptoms are like many who have tick born illnesses:

fatique to the degree that I can't do things on some days,

leg weakness to the degree it is a chore on some days to walk,

pain that moves around in my body, from joints to muscles, to soreness,

digestive track pain that doubles me over

legs do not coordinate with my brain and I am on the ground

disorientation at times

lack of ability to concentrate which impacts every part of my life

Besides Lyme, I have had rickettsia, babesiosis and bartonella.  My Lyme tests have never come back positive due to the nature of Lyme's ability to fool the body into thinking that it is a friendly bacteria, hence no antibodies are produced which would allow the tests to pick it up.

The symptoms come and go and move around.  I have no idea if I will be able to work a full day, be in bed that day, or have a very productive day.  Each day is its own.

First we need to change the CDC guidelines regarding Lyme Disease.

Second, reasearch is needed to create accurate tests for Lyme that are not antibody based

Third, we must create antibiotics that can actually kill Lyme, not just force it into hiding until the treatment is 'complete'.

Fourth, we must have vaccines for all tick borne illnesses.  Yale is in the testing phase of an mRNA vaccine that would not allow the tick to attach.

Fifth, the medical community needs to be educated about Lyme and how it mimics other diseases and that there is such a thing as chronic Lyme.  Back in the 1800's they had to learn that washing hands between patients would stop contamination  between patients. They have to be taught that Lyme is real, that it lives in the body forever, that it does hide and can go into dormant states until it feels safe to go active.

I am 69 years old and it has taken a toll on my body and mind.  It is a death sentence.  People – government, doctors, and patients have to wake up and realize that tickborne diseases destroy what was once healthy vigorous human beings into misdiagnosed, painful withering disease carrying, depressed and cripled beings.

Dorothy Leland
Davis, CA
President, LymeDisease.org

The following is my "Touched by Lyme" blog from August 23, 2022.

What the CDC website gets wrong about Lyme disease

Subcommittee reports from the federal Tick-Borne Disease Working Group are now available for you to read on the Health and Human Services website.

Should you care? Yes. And here’s why:

These reports will help the Working Group decide what to ask Congress to do about Lyme disease and other tick-related conditions.

One of the most important subcommittees to Lyme patients is “Access to Care.” It’s chaired by Dr. Elizabeth Maloney and Captain Rebecca Bunnell, of the US Public Health Service.

It deals with the many barriers that prevent people from getting properly diagnosed and treated for Lyme disease.

The group’s report focuses on three key factors that account for many of the health disparities that patients with tick-borne illnesses experience:

Patient-encountered barriers,

Clinician-encountered barriers, and

Medical educational barriers.

What does the CDC website say?

While there are a lot of nuggets in this report, I’d like to highlight the section that focuses on what the CDC website says about Lyme disease.

This is often one of the first places that patients (and their doctors) turn to for information. As a result, it’s one of the first barriers placed in the path of Lyme patients in need of treatment.

The report states:

The content [of the CDC’s Lyme webpages] does not provide an accurate review of the current body of knowledge and fails to acknowledge what remains unknown, what is uncertain, and what continues to be debated [about Lyme disease].

The webpages miss the opportunity to fully describe this multifaceted disease, its many and varied presentations, and the consequences of missed and delayed diagnosis and treatment. Although much of the content is factual, it lacks sufficient depth and, at times, perpetuates common misconceptions.

The webpages on signs and symptoms do not provide detailed information regarding potential disease symptoms and signs or elements of the medical history that make Lyme disease more or less likely. Therefore, clinicians are ill-equipped to estimate patient-specific, pre-test probabilities. The section on diagnostic testing does not adequately discuss the well-known limitations of serologic testing.

Treatment recommendations do not acknowledge the low quality of the available evidence on which they were based and leave no apparent room for clinicians to exercise clinical judgment or engage in shared decision-making.

Although a limited list of references follows the treatment recommendations for erythema migrans, Lyme carditis, neurologic Lyme disease, and Lyme arthritis , these references do not appear to represent a systematic and comprehensive review of the pertinent evidence. Hand-cultivated lists are problematic because they often reflect the anchoring and confirmation biases of those selecting the evidence to be reviewed, which may perpetuate particular points of view, or even errors.

The content regarding PLD/CLD  [persistent Lyme disease/chronic Lyme disease] appears skewed in that it does not provide clinically helpful information or references regarding the condition, potential etiologies, knowns and unknowns, or the diverse and often conflicting scientific viewpoints that mark this challenging health problem. The list of references is overly weighted toward the risks associated with treatment and provides an inaccurate assessment of the potential benefits.

Although information about the scientific evidence may be too detailed for the general public, it could and should be included on the “health care providers” webpage. At present, this webpage offers an inaccurate portrayal of the available scientific evidence and current state of clinical uncertainties. This is best exemplified by including a video of a patient discussing his misdiagnosis of Lyme disease while omitting any discussion or videos of patients with Lyme disease whose lives were irretrievably altered by diagnostic and therapeutic delays when Lyme disease was erroneously diagnosed as something else, or the complex problem of PLD/CLD.

So what to do about it?

Later in the report, the subcommittee recommends:

Fund and support a directive for CDC to conduct a review of CDC webpages and the current CDC TRAIN CME [continuing education modules] pertaining to the prevention, diagnosis, and treatment of Lyme disease to determine whether they best reflect the current state of the science and appropriately delineate areas of scientific uncertainty.

Sounds like a pretty good idea, don’t you think?

CDC Director Dr. Rochelle Walensky recently called for an organizational overhaul of the CDC, due to the agency’s missteps during the COVID pandemic.

A similar overhaul is needed for all the CDC’s missteps related to Lyme disease–including correcting the website problems listed above.

I hope the Working Group takes the subcommittee’s advice and asks Congress to fix this–pronto.

Eric Taylor
Pittsburgh, Pennsylvania

Dear Tick-borne disease Working group,

Eleven years ago I was struck by an illness that has gotten progressively worse despite the dozen specialists I have seen. It hit me suddenly one morning with a disruption in my equilibrium and outrageously high blood pressure. My family physician had recently retired so it took me a month to see a new doctor.

When the nurse took my blood pressure she turned white and abruptly left the room. In less than a minute my new doctor came in, introduced himself, and took my blood pressure again. It was 260/165 (which it had been the previous month). Dr. W looked me in the eyes, shook his head and asked me "How are you conscious?"

He assured me that "there are only a few things that can cause blood pressure this high" and we began an intensive search involving dozens of doctors over a decade.

The most important thing I would like to tell this committee is that I reported to every doctor I have seen that I am an avid gardener and my favorite hobbies are hiking and camping. Moreover, when Dr. W began to suspect hypochondria and sent me to a psychiatrist, I was prescribed a weekly hike in the woods and wetlands "for the mind/body connection."

I live in the U.S. North East -- ground zero for Lyme disease. Yet not one of these doctors thought to test me for Lyme.

Seven years later, after pulling a few nymph ticks off of myself, I requested a Lyme test from Dr. W and it was positive. That is when the real nightmare began.

After 21 days on doxycycline I felt worse than ever. Dr. W said it was a reaction to the doxycycline and I would feel better in several months. Four months later I was told that I no longer had Lyme but now suffered from fibromyalgia and chronic fatigue syndrome, what they called "Yuppy Flu" back in the 1980s because it was considered to be a psychosomatic illness.

Reading hundreds of papers and watching numerous talks by Lyme experts like Richard Horowitz, MD, I realized that I might have coinfections with other tick-borne diseases such as babesia and bartonella. I learned that tick-borne diseases are notoriously difficult to test for and often require numerous blood tests to identify. I requested Dr. W test me for possible coinfections and they all came back negative, Yet I saw that the reports for bartonella and babesia noted these tests were not conclusive due to the high rate of false negative results. Repeated testing is recommended if babesia and bartonella are suspected.

Four years passed and I progressively felt worse, while pursuing treatment by so-called 'Lyme Literate MDs'. After several years of high dose antibiotics. I requested further testing for the most common co-infection babesia from several doctors due to significant symptoms like drenching day and night sweats. Nothing. When I watched an excerpt from a 2014 talk by Dr. Horowitz recommending a babesia panel test. I talked Dr. W into it although he questioned if I would be satisfied with the results of any amount of testing, The antibody test was positive  >80 titer.

Dr. W told me I tested positive for babesia but the titer had to be >160 in order to be an active infection. Two other infectious disease MDs concurred and I was offered no treatment. In 11 years I have received no help whatsoever and my symptoms are worse than ever. There is a good chance that if I had been tested for Lyme 11 years ago I would not be so sick today. Doctors need to test for Lyme regularly and immediately upon learning of a patients' love of nature and gardening, particularly in endemic areas like mine. Anything less is willful ignorance.

Sincerely,

Eric Taylor

Fragrance Free
Phoenix, AZ

I have MCS (multiple chemical sensitivities) along with Lyme and coinfections. The government should make all public places switch to fragrance free hand soaps. Or at the very least be unscented and have one soap dispenser have those two options. For bathrooms not to use air refreshners or at least have half of them without them (preferably have signs outside to know which ones have it and which ones don’t. All hospital staff should not be allowed to wear perfume/cologne and scented laundry soap. For places to stop over disinfecting already! Or at least use safe alternatives! Like blue light, vinegar, alcohol or peroxide. And use air purifiers instead. To only use FF (fragrance free) hand sanetizers instead. To make buildings with windows that open (to air out chemicals) to give notice when buildings will be renovating. For doctors to be though about MCS. For safe housing. Both for rent and buying. I try to buy a house (I could barely afford it) it was nearly impossible to find one within my budget to not be near a highway, the airport, a busy street, a gas station, etc. for renting, for them to stop painting each tune a tenant leaves. Or at least have the option to not get it repainted. Or at least for them to use no voc or low voc paint. I was at an apartment where it still smellexof the paint, a year later! To have apartment buildings where they can’t use plug ins (in the same apartment I could still smell the plug ins a year later!) to have at least one washing machine where only ff laundry products are used. For tenants to not be put near it (because of others laundry soap fumes). For uber/Lyft to have ff rides. For hotels to have at least 2 ff rooms. For airlines not to use air refreshners through the cabin and at least in one bathroom, for them to use ff soap. Because we can’t just hop out in the middle of the flight. For us to get accommodated at work!! I could have very easily been accommodated and didn’t get anything until very recent (a unscented soap) and even that I had to ask. My HR guy said he was working on getting me some accommodations. He could have easily asked my manager, but h had to do it! For 6ft distance stickers to be reinstated and fallowed. For grocery stores not to have so much cinnamon sticks and pinecones and to have them only god December instead for months. For every airport to have an invisible illness program like the sunflower one. For health insurance to cover natupaths (because they know about MCs), for supplements to be covered by fsa accounts or health insurance. I don’t qualify for foodstamps, or help with health insurance(which is pretty useless for me). Yet I have to buy organic, dairy free and GF food, and pay for treatments mostly out of pocket (like 95%) I also never get the health credit even though I spent like half my money on treatments! Which also leaves me with no money to save to buy a small house

Georgia Kolbas

Hello my name is Georgia Kolbas and l am living on Lyme time. I never know will l be able to get out of bed tomorrow because that’s what life is like for me. One day l get up slow but get up and the next lm in so much pain can’t move. All due to Lyme disease. I was a park ranger for over a decade and l was so happy loving my job and loving life. Until l wasn’t . I would pull ticks off me every day. But young and stupid l wasn’t that worried about it. Until l had to be. I started getting really sick in 2010 taking oral antibiotics on and off finally in 2014 after l had to have a hysterectomy and was diagnosed with a left bundle block due to Lyme disease. My sister found a tick borne disease specialist and he put me on an IV of antibiotics for about a year and a half everyday for 3 hours sessions. I could barely walk by this point. He saved my life. But l have to say this I’m not acceptable that people especially in America can not find a Doctor that is willing to be literate in Lyme disease and tick borne diseases in general l found out that l have 2 co infections as well. I find it so sad that Lyme is an epidemic and we don’t have a vaccine to give people. I find it even more scary that in the 1980’s there was a vaccine being given to people by there choice and now we can’t get that vaccine? Why? I am still suffering in 2022 and still needing to look for a new Lyme Dr because mine had an unfortunate stroke and l can not find one? Why? It took a pandemic to open more eyes into the epidemic of Lyme disease that was going on before the pandemic. We need better testing. We in Pennsylvania really need a vaccine. For me it’s so bad l have ptsd l don’t have a desire to go outside because l still get ticks to this day. I haven’t been in s park for years it does not matter in Pennsylvania you can walk out of your car and on your way to you door get infected it is that bad!Thanks for giving me the time to share a brief part of my story.

Georgia living on Lyme time

Jacqui Butterworth
Huddersfield

Dear Sir/ madam

I am requesting that there be better testing for Lyme and co-infections. This disease is a national scandal that needs looking into. There has been too much cover up regarding the cause-people are denied treatment and living in pain, some even committing suicide due to getting very little medical help.I beg that something is done to support these patients who have been fighting for years-I have 36yrs!!

Regards, Jacqui Butterworth

Jen Hadd
Plain City, Utah

I would first like to address the title “tick borne”. Lyme disease was found in Otzi, the iceman.  Lyme is proven to be transmitted in utero.  It has not been proven to be sexually transmitted even though the bacteria is in the vaginal wall and sperm.  Not to forget the many bitters that also carry Lyme (Lice, mosquitos, etc).  To limit it with the title “tick borne” is obsolete.

My second point is how the Lyme spirochete change from well known forms to altered morphology.  They are capable of forming cysts, round bodies, L-form bacteria, microcolonies, or biofilms like aggregates.  Which makes it impossible to cure with antibiotics, unless you are only concerned with those that are bitten by a tick less than a month ago.  In that case you are neglecting the people that die due to complications of Lyme disease every year.

I believe your first focus should be to produce a test that is reliable.  There are over 300 strains of Borrelia.  Too many people suffer for years without a proper or miss diagnoses.  They suffer irreversible damage due to this major flaw.  I truly believe if this was corrected your numbers would be astounding!  When Lyme is allowed to go chronic lives are destroyed!

I am no scientist.  I am a Lyme sufferer that has been allowed to go chronic.  I had to leave this country to be diagnosed with a dark field microscope after years and countless doctors/medications in the US. My diagnoses has been confirmed in the US but I don’t dare tell doctors that I have it.  I don’t know why Lyme is so taboo in the US that I have had doctors refuse to see me because of it.

Please be the change we all need!

Thank you for your time,

Jen Hadd

Plain City, Utah

Juan Laden

Hello,

Functionally, our sick care system is based in profit motive and has little to do with patients health, or the general health of our society, so we are already at a deficit. There is no money in tick borne diseases from a profit standpoint, but the costs are innumerable, not to mention the suffering and lack of joy in life. We need definitive diagnosis, and efforts need to be explored in that direction. To find appropriate treatments that target just the pathogens, is necessary too. Let's focus our efforts and money on these directions and the payoff will be a fundamental improvement to life for all.

Thanks, Juan

Kara Bennett

As a psychologist and someone with personal experience of long term Lyme problems, I have previously offered comments regarding the need for more education about the diagnostic process involved in illnesses with complex and nonlinear symptom patterns.These comments and my article published in 2000 about this issue are still relevant. For example, there  are continuing reports of people eventually diagnosed with Lyme Disease being unable to find a timely diagnosis or long term treatment possibilities. Bennett, K. (2000).  Perceptions of Lyme Borreliosis. Journal of Spirochetal and Tick-borne  Diseases, 7, 42-51 https://www.ilads.org/wp-content/uploads/2018/10/JSTBD-VOL7-FALL-WINTER-00-2.pdf

Because of new ways for evaluating a person’s symptoms that will include more personalized medicine, I wanted to add information about education concerning the diagnostic process from the JAMA series on Diagnostic Excellence. These articles were offered during the past nine months and would be helpful to include in education for Lyme Disease and other Vector-borne Diseases. A summary of the articles is included in; Fineberg HV, Song S, Wang T. The Future of Diagnostic Excellence JAMA. 2022;328(11):1039–1040. doi:10.1001/jama.2022.12205

As the article is not open access this video summary is also helpful.Achieving Diagnostic Excellence | Breast Cancer | JN Learning | AMA Ed Hub (ama-assn.org)

Kim V
Virginia

I was a healthy young woman.  I was just married, loved my career, enjoyed an active lifestyle of hiking, scuba diving, and working out.  I was an aerobics instructor on the side, and I considered myself to be fit.  However, by my mid-twenties, and after the birth of my first son, there was a noticeable decline in my health.  Over the next decade, I would visit my doctor more times than I can remember.  I would be sent to every specialist: cardiologist, rheumatologist, pulmonologist, urologist, and a neurologist.  I was scanned, scoped, poked, and tested time and time again.  But the only thing that my doctors could agree on was that there was nothing clinically wrong with me.  They didn't deny my symptoms, but they also couldn't pinpoint where those symptoms stemmed from.  I was often sent on my way with a round of antibiotics for good measure and told to come back if I needed to.

This pattern continued for a decade.  And as each year passed my health deteriorated more and more.  The aches and pains in my joints were debilitating.  I had to crawl up the stairs.  Walking produced intense nerve pain like I was walking on razor blades.  I couldn't sleep at night because of severe twitching in my muscles and erratic heart rate.  I was dizzy, sensitive to light, unable to tolerate moderate sound, and felt a level of exhaustion like I never had experienced before.  My digestion was off.  I was becoming allergic and intolerant to foods that I had eaten all of my life.  But worst of all were the cognitive symptoms:  inability to think and recall, lapse of memory, slurred speech, blurry vision, tinnitus, and an overall slowing of my cognition.  I no longer recognized the woman I was physically or mentally.  As a wife and mother of three sons, these years were frightening.  When my symptoms finally began to affect my heart, I felt as if it was only a matter of time before something devastating happened.  And all the while every test was fine, every Lyme test was negative, but I was far from it.

I finally needed to step away from the traditional medical community as I was in desperate need of help.  I turned to Osteopathic doctors and naturopaths who helped a bit.  But to make a long story short, my husband and I traveled from New Jersey to Arizona to see a doctor.  He did some bloodwork and pinpointed my problem:  Lyme Disease and a whole host of co-infections.

I write to you today to urge you to please work to fund an accurate Lyme Disease test.  Had the initial Lyme Disease tests that were administered to me been accurate and reliable, I may not have lost a decade of my life and today, I may not be dealing with the aftereffects of a prolonged illness.  I may not have had to go into debt, and I may have been a healthier mom to my young sons.  I find it completely unacceptable that there is no commonly accessible antibody test for Lyme and its coinfections.  We have had public knowledge of Lyme Disease for over 50 years, and still today, we are not properly equipped to diagnose and treat patients.  This is unconscionable.  Instead, people are left to suffer - physically, emotionally, and financially.  If a test for Covid could be developed rapidly, I believe that a readily available, accurate test for Lyme could be developed as well.  Surely in a country like ours with great minds and amazing abilities, someone could tackle this problem.  I refuse to believe that it can't.  I am only left to believe that there must be a conscious decision to look past Lyme.  Accurate testing yielding reliable results must be the first step in fighting Lyme. Prompt treatment of Lyme produces beneficial results in the short term and the long term.  When treatment is delayed, and the bacteria grow unchecked, long-term effects occur.  But in order to have treatment, one first must be diagnosed properly.

Thank you,

Kim V.

Virginia

Laura
Pennsylvania

CURRENT SITUATION: My 31 year old daughter is INCAPACITATED by Lyme and babesia and bartonella. She can not live independently, has no income because she can’t work.  She luckily is under treatment with an excellent doctor.

ISSUES WITH TREATMENT: The costs associated with treating this are astronomical because health care doesn’t recognize these illnesses. She may have had this for years, as doctors are not trained in these tick born diseases.  My daughter has been under “aggressive” treatment since November 2021.  There is some progress, but it’s slow. The treatment makes her feel extremely ill: body aches, extreme tiredness, visual distortions, vomiting, short term memory issues, sleep disruption, increased anxiety, suicidal thinking, balance issues.

CONSEQUENCES: Sadly, her financial responsibilities have become ours, which is a huge burden (and one we are struggling to carry) but where is she supposed to turn? Other than Medicaid and food stamps, there is nothing else.  She is trying to get disability, but it’s a long hard lengthy process and chances are she will be denied initially and then you have to appeal.  WHAT A BLACK HOLE OF HELL THESE TICK BORN DISEASES HAVE THROWN OUR FAMILY INTO. Her life and ours has been forever altered by a damn tick. One we never saw on her.

WHAT WE NEED: We need better testing, better treatments, more doctors with knowledge of how to treat and MEDICAL COVERAGE and recognition. I tell people that having these tick born diseases is like the wild Wild West, no one knows what to do, it’s a free for all trying to find treatment, and there’s a lot of different opinions from extremely expensive doctors on how to treat ($1,800 for a 3 hour consult, which is not covered by insurance). It’s  not cancer, it’s not heart disease, doctors know how to treat these, but most of the medical community doesn’t believe or understand tick born illnesses and wants to do a blood test that doesn’t work, and throw 10 days of antibiotics at you and expect it to be taken care of. You are on your own trying to find a Lyme literate doctor, and have to hope and pray they are skilled, know how to help you, and you have the financial resources to cover the very expensive doctor and treatments.

PLEASE HELP US,

Laura, PA

PS we have deer in our backyard everyday.

Laura Hill
Fort Collins, Colorado

Thank you for addressing the timely and pertinent topic of Lyme Disease.  I would like to share with you my experiences so that you may have a better understanding of what it's like to be chronically sick with this debilitating illness.

Seven or eight years ago, when I was in my late fifties, I began having lower back pain.  The pain gradually increased.  I thought my problems were age-related, though I was an active, athletic woman who exercised regularly and spent a lot of time at outdoor sports.  When additional symptoms appeared, including gut issues, hypothyroidism, neuropathy, pain in my extremities, food sensitivities, chemical sensitivities, etc., etc., I began to suspect something else was going on.

I started going to doctors.  The first doctor prescribed a multitude of tests.  All  the results came back "normal," including the marker for Lyme.

Over the next several years, my life changed dramatically.  I spent much of the day either lying in bed or on the couch.  I went from care provider to care provider (at least 24 in total):  endocrinologists, gastroenterologists, primary care physicians, physical therapists, E.R. doctors, functional medicine doctors, rheumatologists.  But none of these care providers found anything "wrong" with me, although I lost 40 pounds over a period of three years, couldn't sleep, was in pain, couldn't venture far from a bathroom, and had to stick to the auto-immune diet, which is extremely restricted and difficult to follow.

Finally, in 2022, I happened upon some articles written by a NY Times writer, Ross Douthat.  Mr. Douthat explained that he suffered from Lyme Disease.  I decided to buy his book.  As I read this book, The Deep Places, I noticed that my symptoms were exactly like Mr. Douthat's.  At the time, I was seeing a functional medicine doctor, and asked for another Lyme Disease test.  There were several laboratories to choose from:  one that charged $900, and another that charged $3000; both would be out-of-pocket, as insurance would not cover the tests.  I requested the $900 test, paid out-of-pocket, and the  results I received indicated that I have both Lyme Disease and Bartonella (a co-infection of Lyme).

All of this is only the beginning of the story.  Both diseases are difficult to eradicate, and traditional doctors do not know how to treat them.  So I am seeing yet another Functional Medicine doctor (actually, a PhD nurse), who is prescribing a "cocktail" of numerous supplements, pills, and tinctures.  The dosage of these "medications" will slowly be ramped-up over time, and with luck, I will get well.  But that remains to be seen, and in the meantime, the cost of this unproven treatment protocol is completely out-of-pocket.

My daughter, who is a medical editor, informs me that very little money is spent on research into Lyme Disease.  On a regular basis, I hear about others who are suffering from Lyme, and the difficulties they have as they attempt to be taken seriously by the traditional medical community (typically, Lyme sufferers are told, "The tests came back normal, so your symptoms are  in your head").

As more and more people suffer from tick-borne illnesses, I request that you initiate more funding for research, and training for medical professionals.  Having Lyme and Bartonella has completely changed my life.  I am hopeful that I will heal, but I would not wish on anyone the journey I have been on for the past seven or eight years.

Thank you for your time.  Sincerely, Laura Hill

Linda Loving
Aiken, SC

Please all take this rampant epidemic seriously.  I have had Lyme/ Babesia for 30+ years.  Tested by Lab Corp yearly and the positive test was just discovered Spring of 2021.  The Orthostatic Hypotension, autonomic nervous system damage and damage to eye sight, hearing( tinnitus) and arthritic changes will not be corrected.  It’s too late for me.  Prevention is key, because once the damage is done, it’s not solvable.  Please, more research, Education of ALL doctors, and accurate testing must be accomplished.

Michele S
Albany, NY

Lyme Disease has had a significant negative impact on my family, with 4 out of 5 family members contracting it when we lived in western Massachusetts.  After my husband got it a second time, his memory was suddenly noticably different and it never returned years later.  One of our children has continuing health problems that happened after getting Lyme Disease even though he was treated relatively quickly.  We don't know if health issues that our other two now-adult children have are related to contracting Lyme as youngsters, but they could be.

People are no longer able to live a normal existence with nature, even in their own backyards.  Our children were no longer able to play like children normally do, instead having to spray with chemicals (the toxic ones tend to work most effectively), do daily tick checks, and dress differently, being fully covered even when it's hot outside.  Still, those aren't even enough preventative measures as we can miss ticks on people and pets even with checks (ticks can be as small as a pencil dot).  Our dog died related to complications from Lyme Disease (this was before a vaccine was developed).

I know it's hard to imagine how bad Lyme is when you haven't been personally impacted by it, but if we don't put money toward getting a better handle on it, then nearly everyone who goes outside will be impacted.  It can be as bad as or worse than cancer.

If we put half as much attention & money into Lyme Disease as we do to breast cancer, we'd probably prevent Lyme Disease from continuing to happen.  This report https://report.nih.gov/funding/categorical-spending#/  says that in 2021 Breast Cancer received $731MM while Lyme Disease $39MM.  And that is breast cancer ONLY. Cancer in general, & other specific cancers have their own funding. Doesn't it seem possible we could figure out how to eradicate Lyme Disease in the insects that carry the diseases and spread them?  More and more people are needing help due to Lyme Disease and they should receive it, but I also think that it could be helpful to put money toward eradicating the diseases by targeting the insects and animals that carry and spread Lyme-related diseases so that less people will actually be inflicted.

Pat Dambra

It is turning into a bureaucratic nightmare.  What has been accomplished?  The group moves too slowly.  Stop going over things from the past.  the focus should be on getting a reliable test, proper treatment and reimbursement from insurance or paid for by the government, and a vaccine.  The Lyme crisis should be handled like the AIDS crisis.  Why isn’t it?  People are sick and dying.  Take the politics out of this and get moving on the above mentioned as fast as you can.  Lyme is real and dangerous.  The government has on obligation to protect it’s citizens.  Lyme patients should sue the government in a class action suit.

Wendy Phillips, Founder at the Lyme Treatment Foundation

To the Tick-Borne Disease Working Group,

I am the Founder and Executive Director at the Lyme Treatment Foundation, and I have Lyme disease.

Before being diagnosed with Lyme disease in 2017, I was in graduate school in California studying biochemistry. I ended up leaving my graduate program because of a mysterious illness that no doctor could diagnose.

I lost the ability to read and comprehend, follow written directions, I developed seizures and eventually became bedridden with heart problems from this debilitating disease.

I moved back home to Florida and the symptoms I was experiencing became unbearable.

By January 2017, I was suffering with seizures, neuropathy, heart problems, excruciating back pain, dizziness and more.

It wasn’t until I was 26 and was experiencing heart palpitations of 190 beats per minute, that I was admitted into the hospital for my heart in July 2017. I truly thought I was going to die from this horrendous disease.

Luckily, while I was admitted into the hospital, an amazing nurse named Jamie came in and said that she thought that I had Lyme disease. The multiple physicians who saw me that day in the hospital disagreed, but this incredible nurse sent me to my current Lyme doctor, and I have been in treatment since 2017.

I still have symptoms.

This disease is a systemic, long term, life changing, horrific illness and even worse than the symptoms, is the way physicians treat these patients, who are just looking for answers, just looking to reclaim their lives and health.

Most physicians do not understand this illness, they do not understand that it is a chronic, debilitating disease and patients are often laughed at, told to see psychiatrists, etc. and end up suffering indefinitely.

I run a non-profit where we provide individuals with Lyme disease treatment grants worth up to $4,000, to fund long-term Lyme disease treatment that is not currently covered by insurance.

Since launching in 2019, we have received 938 applications for treatment grants from people all over the country, (including 49 U.S. states and Puerto Rico), pleading for funds for the treatment of chronic Lyme disease.

In 2020, we even expanded our granting program to those living in Canada, too, thanks to our partnership with The Avril Lavigne Foundation. And in 2021, we expanded our reach even further, to include the United Kingdom and Germany to help even more people suffering from the debilitating effects of Lyme disease.

Here are some of the stats from our 2021 grant applicants:

76% of our grant applicants report experiencing debilitating heart symptoms

89% of our grant applicants report experiencing daily pain

63% of our grant applicants report being unable to work

People are suffering. I have read many of the applications that we receive, and it is truly awful what is going on. This is a chronic illness and should be designated as so. In our own applications, many entire families are affected and cannot afford proper testing and long-term treatment, and they need your help.

We need accurate blood tests, so that those suffering from Lyme disease and other tick-borne infections can be diagnosed early. We need this so that people do not develop severe symptoms from a late-stage diagnosis. We desperately need your help!

We also need long-term treatment covered by insurance. Too many people and families cannot afford long-term treatment on their own, as we see daily from those who apply for treatment grants with us at Lyme Treatment Foundation.

And worse, with so many being unable to work, many of our applicants have attempted filing for disability, but because Lyme disease does not qualify as a disabling condition, almost all of them are denied. We need your help getting insurance companies and employers to recognize how debilitating this disease is.

Some of our grant applicants have lost their homes due to attempting to pay for long term care on their own, and many of them have multiple family members affected by this illness.

Please, vote on calling this a chronic illness. The suffering happening cannot be put into words and we need your help! Labeling this illness for what it is, a long-term, disabling, life altering condition would help countless lives.

Thank you for your time and understanding on this matter,

Wendy Phillips

Founder & Executive Director

Lyme Treatment Foundation, Inc.

lymetreatmentfoundation.org

                    
  


Content created by Office of Infectious Disease and HIV/AIDS Policy (OIDP) Content last reviewed October 2, 2022Back to top
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