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                              TBDWG November 21, 2022 - Written Public Comments


    

    

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TBDWG November 21, 2022 - Written Public Comments








  
  
    

  
      





Sarah

Hello and Thank You for all of the good you are doing for the people affected by Lyme disease.

My name is Sarah Newcomer and because of the complexity of Lyme disease I'm not sure if I am affected by it or not. Some tests come out positive for Lyme and confections and other tests do not. I'm sure you've heard the story before.

In 2015 I was traveling to Wisconsin and was bit by a tick. It was in me for 2 days after returning home to Farmington. MO.  I do not recall having any symptoms at the time.

8 years later I lived in a moldy cabin on a riverbank.  According to what I am learning mold can "reactivate" Lyme. This complexity is not what any physician is prepared to deal with in Farmington, Missouri. Especially when lab tests are inconsistent. The fact that Lyme exists in three different states spiroquete, fibrin nests and cysts means we really need to develop lab testing that can detect Lyme in any of those states.

Physicians need to be enlightened that people travel and can pick up Lyme that is not endemic in their home territory.

Studies including mold reactivating Lyme would be quite helpful.

Thank you

Sarah

Anonymous 1

Hello,

I would like to present my past and current history about fighting Lyme disease and confections for myself and young adult children.  Not just the disease within the body, but of also the  limitations of the medical systems driven by the CDC  and lack of technical scientific evidence, blood testing,  which impede our care.  We are hoping that the Long Haul COVID research will spill over to Lyme disease and its co-infections, as many of the same symptoms are reported.  We are thankful that some institutions have taken the time to bring about research groups of individuals with symptoms, albeit, Long Haul COVID, listening to the vast array and ages of this debilitating illness and puzzle.

The ignorance or lack of knowledge that one has an illness that could present with so many symptoms presented to the front line medical providers is not appropriate.  They are the ones that should lead the investigation by providing at minimum a set of blood work that would screen for multiple infections. Parasitic, viral, and bacteria, and mold can all be harbored in the human body, no matter the condition.

We have  seen through this COVID time, since end of 2019, how the virus has mutated and escaped despite the development of anti viral medication , and as such a resurgence of symptoms after short course of Paxlovid , herxing reports post so-called recovery of most of symptoms.  Medical screening of all infestations including mold would be helpful, and the more expedient and accurate the results of such testing would cut the loss of human quality of life and maximize the productive years to come.

Lyme disease and co-infections can be numerous, compounding the dilemma the medical community faces.  No different than COVID.  COVID has had its advantages with severe consequences that brought it death causing circumstances.  Lyme disease and its co-infections may by underlying causes of those medical conditions that compound the human health to fight the likes of COVID, however, the front line medical providers do not accept this disease condition as a possibility.  The offending factors may appear briefly acutely, but then hide until the body is disturbed with another onslaught of a different or compounding trauma or infection.

Brain fog has been repeatedly aired regarding Long Haul COVID.  This and many other symptoms are the same with Lyme disease. The nervous system which includes the brain appears to be finite by the medical providers despite their extensive background in medical school. There must be a lack of normal body movements that impeded the flow of the glymphatic and lymphatic system.  My experience has been degradation, though minor of all levels of the neck.  With no acceptable and safe protocol/program to decompress and elongate it back to normal height and movement, it eludes the medical professional.

And, the professionals have yet to fully understand and treat these pathogens that can be harbored and passed from mother to fetus, compounding the future quality of life of both.

My symptoms appeared as such along with seemingly increased tissue density, to the naked eye as fat?  However, underneath it all, the congestion was not alleviated, just kept building, until the brain could no longer function. I had taken the approach, working in the medical field professionally, that the PCP would figure it out.  No.  PCP decided it was time to retire after 37 years.  No exploration of symptoms.  My retirement was left to the Lyme disease and confection course!

Fatigue at work in early AM, short term memory losses, forgetting the name of patients for the day, forgetting where I parked my car, forgetting to turn off turn signals, etc,  I chose to pay for a private consult, internist who knew about Lyme.  My complaints were extensive enough that red flagged her to test for it.  It took 3 weeks to get the results, and another referral was made to a specialist. Another private pay, this time a hematologist who specializes in Lyme disease.  Lots of info in the waiting area that led to bringing in both my youngest two adult children, in mid and late 20's. (They are the youngest of five children.)   My blood work results proved positive for Lyme and 3 other confections.   I thought in my brain fog mind that starting on medication, I would see results shortly, returning to normal function, and chose to stay working.  Three weeks later I was terminated due to poor judgement in accurate documentation. That was end of 2017.

My symptoms had been increasing along steadily over 10 years, I suspect.  Increasing allergy symptoms and lower tolerances to foods I used to eat without difficulty.  Bugs or insects bit whenever they they got the chance. My husband was always spared.

Within two months, my youngest, now a young woman, in college and working, hit bottom with severe depression, three suicide attempts.  Brain scrambled that she would not accept medical treatment from Lyme specialist, denying she had the disease despite proven lab work. Her trip to the psych ER was 72 hours. She has not engaged with medical providers for two years, nor walked outside the home. She is currently, in a world of autistic-like behavior, unable to care for herself, hygiene-wise. Unable to tolerate change of clothing or bathing or most  foods.   A constant worry for us. She is mostly non-verbal. Her brain inflammation was not detected by the CAT scan plus dye in 2018.   She has refused to believe that this medical system could help her. She doesn't believe that an infection could disrupt her life?  She is not COVID vaccine protected and we suspect that it may increase her abnormal behavioral symptoms.  She was very healthy in her first two years of college until this hit.

Our son, 3 years older than her, had schizophrenic-like symptoms, early 2018.  He was taken to the psych unit for 2 weeks where the medical director complained loudly to the medical staff and us, the parents, in a window secluded area, that Lyme disease was consistently written in his records.  This medical director reported that our son should be transferred to another facility to be worked up.  At the time, this director didn't know of any.  He did not pursue obtaining testing, as he didn't know of them nor would the  medical system that he was employed by, [REDACTED], pay for it.  The literature in the Lyme specialist hematologist office said that 20% of all psychiatric population had tested with bacterial diseases or confections!   Lyme was definitely well documented among the Lyme literate MDs. His psych behaviors changed over time with the proper care, two antibiotic medications taken to treat the inside and outside of the cll membranes, and destroy the cysts.  He is ready to return to college.  The medication regime of antibiotics has been daily since 20, changing to different types every 6 to 9 months depending on symptoms and blood test results.    His physical activity level remains low, sedentary, so the worry is whether his symptoms will return with increased activity load.  Medical literature indicates that these microbes can be embedded into cartilage and bone found in cadavers.  His reaction to the COVID vaccines/boosters required 2 days rest.

Perhaps the hidden factor lays in the protective layers of the nervous system, but until this is discovered, a better understanding of how to quickly detect the microbes of parasites, bacteria, and viruses and mold would expedite the health of all, assuming that eh medical professional community can bring up their standards of accurately diagnosing the compounding issues that elicit the long list of symptoms patients bring in.

I strongly urge this working group to put a high emphasis on the problems our health care system, including medical professional standards, CDC, research, lab work and payment system pose limiting good quality care.  When our Swiss relatives tell us in 2018 that when persons are diagnosed with Lyme disease and put on a one year regime of antibiotics treatment, we know that there is a huge discrepancy between the US medical system and Europe's finest Swiss system.  How can the US be a "world leader" when care is lagging?  And, so costly!

Please consider these facts and inputs from real persons.

Thank you.

Sincerely,

[REDACTED]

Deb Elder

Stop talking ~ MORE DOING!

Ban VETERINARIANS from
PUBLIC HEALTH POLICY!
They don't have an hypocritic oath,
of DO NO HARM. 
This should be against
FEDERAL LAW. See Oregon!

"We elect not to treat
Lyme Disease here,
that's just our choice"
[REDACTED]
Infectious Disease MD
Springfield Oregon
Failure to Treat =Harm
https://youtu.be/uja_8GDDVEQ

State Medical Board are scared to death of us!!! They staunchly refuse to budge. Undermine good ILADS standards of care.  Making them largely unavailable!!

Sanction Medical Boards who continue to Fail any Lyme treatment pathways! This blockade from care is killing people. 50% Suicide out. Corruption has to STOP!!
Sanction Medical Boards

All I need to hear is:
THE NATIONAL
FAILURE TO TREAT
Public Health policy
on Lyme Disease
has been righteous
OVERTURNED!!

LYME DISEASE PATIENTS
IN ALL 50 STATES
CAN NOW BE
DIAGNOSED & TREATED
by MDs!

THE Announcement
I and millions of
Lyme patients
are waiting to hear!!!

Lyme patients deserve
EQUAL RECOGNITION
that is EQUITABLE
TO all OTHER
CRITICAL HEALTH CONDITIONS
in ALL PUBLIC LISTINGS.

FAILURE TO TREAT = HARM!!!

Oregon,
Washington,
California;
ALL ENDEMIC
LYME DISEASE STATES!!!

Please realize this fact.

National Monument on the
DC Mall to tell our history.

Stand proudly to display our
national commitment to
never develop BIOWEAPONS again!

To show our:
*Protests
*Actions Events
*Strong Advocates in Government
*Research & Discovery
*Lyme Quilt of our names, on display!
*Take-A-Bite Out of Lyme Challenge
*Our loud mouthed Lyme Advocates
and their individual stories.

Tell it all as only
The National Archives display can!
Lyme History must be told
on the DC Mall.

National testing grounds for all treatment protocols,  medications and supplements.  It's past time to unmask this data.

Creat easy Application, vital questions (maybe a fun game format) about how to become pathogen smarter. Challenge friends,  bring in creative artists and gamers to teach kids.

Teach Lyme in all grades,  first week of all new school years. Mandatory for everyone.

Get Hollywood film makers grants to incorporate Lyme Disease data. Add stories and characters with Lyme.

Always talk to patients.

Stop talking ~ MORE DOING!

We're so fed up with waiting that we're ready to go shut down airports, highways and buildings where we get arrested.

So do something please do it today!

~DiveGirl Deb Elder
Eugene Oregon

Frustrated as hell at the inaction!

Anonymous 2

To the TBD working group,

People are suffering, and even dying, and we need your help.
My family can attest that the disease burden in our community, and that chronic Lyme is not rare.  My husband and teenage daughter contracted Lyme that went undiagnosed for years until symptoms became debilitating, due to poor testing and diagnostics, and undereducated GPs and pediatricians. There have been 9 additional people in our small neighborhood with varying degrees of Lyme from acute to very severe and still in treatment. Everyone I speak with knows someone with “bad” Lyme. I’ve had co-workers with chronic Lyme themselves, another with a spouse who was bedridden, and yet another with a child who was suicidal in THIRD GRADE due to neuro Lyme!  I give private art lessons to a very small group of kids and have had 3 students with Lyme, one of which was severe.  It’s not rare, it’s everywhere!

Before my daughter was diagnosed with Lyme, her pediatrician said “it’s really strange, so many of my patients seem to be developing dysautonomia.”  Her guidance counselor said “it’s really weird, all of these kids have POTS now and can’t get to school”.  After being diagnosed and finding out that my daughter’s dysautonomia, POTS, was caused by Lyme, my daughter gave a speech about it in class and kids were raising their hands and saying “my doctor says I don’t have Lyme, but ever since I got bit by a tick I’ve been getting fevers and passing out.”  Another student said “I’ve been getting hives after a tick bite and my doctor said I don’t have Lyme I’m just allergic to tick saliva.”  I think there is more Lyme in Bucks County than our doctors and our community even realize.

Left undiagnosed, Lyme can pass through the Blood Brain Barrier and cause a host of unbearable symptoms. Both my husband and daughter slowly developed symptoms that kept piling up but took years to diagnose.  My husband could barely walk due to the pain throughout his body, suffered g.i. issues and extreme weight loss, vertigo, insomnia, constant ringing in his ears, and memory loss.  One day when he was at his sickest, he tried to take a short walk in the neighborhood, and ended up laying down and falling asleep on a neighbor’s front yard bench.  He has no recollection of doing this.  In my daughter Sarah’s case her infection crossed her blood brain barrier, spread to her heart, brain, and Central Nervous System. She spent so much time bedridden due to vertigo, crushing fatigue, neuropsychiatric symptoms and a migraine that lasted 3 months, that in 2019 she almost had to drop out of high school.  Sarah went from getting A’s in advanced courses at Council Rock North to unable to read.  She went from being one of the fastest girls on the track team to unable to climb the stairs at school...all from undiagnosed Lyme from a tick bite in 2015.   She is now in her third year of treatment and has not been able to attend college yet.

Lymedisease.org has posted on their website the results of two surveys published in peer-reviewed journals.  The first one, stated that 65% of patients with chronic Lyme disease have had to cut back or quit work or school and 25% have been on disability. The second one found that chronic Lyme disease is associated with a worse quality of life than most other chronic illnesses, including congestive heart failure, diabetes, multiple sclerosis and arthritis.

Better testing, better public and physician education, better treatments and of course ultimately a cure for long term chronic Lyme and coinfections could save so many people from years of suffering. Lyme is physically, mentally, and financially debilitating.

Testing & Patient Expenses:  Both my husband and daughter each had 3 false negative Western Blot tests, which led to years of delayed diagnosis, giving the infection more time to spread throughout their bodies. At the time that the current test used by most GPs and pediatricians was developed, I was still using a typewriter.  I have since ditched my typewriter and upgraded my technology, but our healthcare system has not.  Ticks transmit not one, but hundreds of bacteria, viruses and parasites, known as co-infections. The most common are various strains of Borrelia, Babesia and Bartonella but there are many more.  While Lyme disease accounts for over 80% of all tick-borne cases, spotted fever rickettsiosis, babesiosis, anaplasmosis and ehrlichiosis have also seen an increase over the past four decades. Yet the Western Blot test routinely used by general practitioners and pediatricians only tests for a handful of bacteria, and is very unreliable leading to many false negatives like ours. Often the sickest people get a negative test result. Unfortunately, general practitioners and pediatricians use the unreliable Western Blot as their gold standard. Thousands of people each year who get negative Western Blots are told by their doctors that they do not have Lyme, when in fact they do. Many of those will go on to develop chronic long-term symptoms.

To make matters worse for Lyme sufferers, insurance companies don’t cover treatment without a positive Western Blot test. Even with a positive Western Blot, Because the CDC states that Lyme disease can be treated with 30 days of antibiotics, the majority of insurance companies do not recognize chronic Lyme disease as a legitimate illness and will not pay for long-term treatment. The cost of Lyme disease treatments can run into the thousands for patients each year and sometimes each month.

Independent labs such as IgeneX have developed more sensitive tests for Borrelia and other tickborne diseases, and an increasing number of people who were originally diagnosed with chronic fatigue syndrome and Fibro Myalgia are turning up positive for Borrelia and, frequently, one or more of the other tickborne diseases.

The IgeneX tests are much more accurate but cost from $225 to $2,957.50 (igenex.com/test-directory) and usually not covered by insurance.  These IgeneX tests should be covered and should be offered as a part of every well visit, especially for patients displaying neuropsychiatric symptoms. This could be especially beneficial considering that many people do not remember being bitten by a tick, do not get a bullseye rash, and have no idea that they have Lyme progressing which leads to debilitation.  With more accurate testing, there would be new awareness of how prevalent Lyme really is, and would cause everything else to fall into place: public & practitioner education, better treatments, and eventually a cure.

Public Education:  If I knew then what I know now...  Previous to my family members becoming ill, we had the same misconceptions about Lyme as most people do:  A) Lyme is not a big deal, just a little joint pain, B) you will know if you have it because you will get a bullseye, C) it is easily treated with antibiotics.  Instead, if we had known how much misery, and near job loss, it would cause my husband, and that it would cause our daughter to have to quit a job she loved, give up her spot that she had always dreamed of as a runner in the Penn Relays, nearly drop out of high school and have to hold off indefinitely on college, we would have taken tick prevention more seriously.  Most people have no idea that one tick bite can cause so much misery and debilitation and that it can take years of treatment and trying different protocols to see what works.

Practitioner Education:  Practitioners need to be better educated on all of the ways that Lyme can manifest itself and how to recognize Lyme symptoms other than joint pain. This could eliminate the needless suffering and deterioration of so many patients who instead become chronic. Doctors need to recognize that they cannot rely on the Western Blot test alone. Instead of getting the treatment they need, many Lyme sufferers are told that they have fibromyalgia, chronic fatigue syndrome, or it’s just stress and they need to see a counselor. Some doctors even dismiss the existence of chronic Lyme as a disease at all, while others know that it is real but just don’t want to deal with it.  Gaslighting is common with Lyme. The international Lyme and Infectious Disease Society (ILADS) has Lyme training programs available for physicians, but only if they choose to sign up. This training should be recommended or even mandatory for all physicians.  Especially since most medical schools spend all of 10 minutes on Lyme education.

Inadequate Treatment:  Many acute cases are treated with 21 days of antibiotics, most often doxycycline.  But for many infections that is not enough and the infection grows back.  The safety of treating with long-term antibiotics is understandably controversial, but it is also dangerous to let the infections spread.  People do die from Lyme, as you probably know was the case with Senator Kay Hagan.   There is no one size fits all treatment. Every patient has a different combination of tick-borne coinfections and each co-infection needs to be addressed differently. With testing being so poor, it is often hard to know exactly what co-infections each patient has. The challenge is safely finding targeted treatments for each patient’s multiple infections. Lyme is complex. The bacteria creates biofilms around itself to help it evade treatment. Lyme also impairs a patient’s ability to detoxify mold and heavy metals, and causes the development of food and chemical sensitivities which makes it difficult to heal.  After two years struggling with undiagnosed Lyme, my husband was able to regain his health after 2 months of i.v. antibiotics and has remained symptom free for several years now.  My daughter, however is improving but still fighting for her health every day, even after three years of treatment.

Currently, previously productive members of society continue to go undiagnosed or cannot afford treatment. Some lose their jobs or drop out of school. Some go on to develop depression and sometimes addictions.  The suicide rate is high among chronic Lyme sufferers, either because they are sick for so long and cannot get well, or because Lyme and coinfections in the brain actually cause anxiety, depression, suicidal thoughts and a host of other psychiatric symptoms. Dr. Robert Bransfield of Red Bank NJ writes extensively about the neuropsychiatric symptoms of Lyme and coinfections including violence and Lyme Rage. Tick borne infections can affect any organ and mimic other diseases. When the infections make their way into the bloodstream, they travel throughout the body, settling in tissues, joints, the heart, the brain, and throughout the nervous system.

Lyme specialists speculate that a fair percentage of patients with neuro-degenerative diseases such as MS, ALS, Parkinson’s, Alzheimer’s, and even Autism may actually have tick borne infections.  Just imagine the possibility that if we can solve the Lyme problem, some other problems may be solved too!

Please, please, please do everything in your power to address the Lyme problem. Hundreds of thousands of people need your help and are counting on you to be agents of change.

Thank you again for your time and consideration.

Best Regards,
[REDACTED]
Pennsylvania
Lyme capital of the U.S.

Carl Seils

My name is Carl Seils

I have tested positive for the Tick Borne Diseases Borrelia, Babesia, Bartonella.

Conventional treatment has not been successful in clearing my infections.

To understand the magnitude of the National problem, the raw testing data (ie number of requested tests for Tick Borne Disease regardless of outcome) should be compiled from the lab companies such as Quest, Labcorp etc.

The current Tick Borne Disease tests themselves are not accurate, for example my Babesia immune response tests show negative but microscopic examination of my blood sample readily reveals parasitic Babesia infection in the blood cells.

Accurate, readily available Tick Borne Disease tests need to be developed.

Sufficient research money needs to be appropriated to develop successful treatments.

Thank you for your consideration of these issues.

Anonymous 3

Hello,
I would like to say that the public health system has failed myself and our three children. When I first became sick at the young age of 26, I had no clue that this would be the beginning of decades of sickness. There was nothing to stop the Lyme spirochetes from spreading throughout my body while I went from doctor-to-doctor begging for answers. I pleaded with each doctor that I saw to help me. Unfortunately, they were not trained to recognize the signs and symptoms of Lyme disease. They did not take my symptoms seriously.  Thus, precious time went by when I could have been accurately diagnosed and received proper treatment. That would have given me the best chance at a full recovery.
As the years went by; I gave up on standardized doctors. My symptoms became worse, and I became even sicker. I started paying out of pocket to see alternative doctors in hopes of getting a diagnosis. I needed answers. Overnight, I went from being a healthy, ambitious professional to a weak, sick, and barely functioning person.  As it turns out that finding a competent doctor was only half the battle. Another major blow was to find out that standardized testing for Lyme disease is inaccurate.

Later, I would see a Lyme Literate medical doctor who charged me a $1000 an hour. He went through all my labs, and he could not believe that I was never tested for Tickborne infections. He found only one test through Quest that showed a negative for Lyme disease. I'll never forget when the doctor looked at me and said, who the hell gave you that garbage test?! Come to find out that it was a Doctor that he had personally trained. The truth is that many patients will be improperly diagnosed due to faulty testing.

I once again handed over my credit card and paid $650 out of pocket to get what is considered a gold standard blood test. It took 12 weeks to get the results from the lab because they cultured my blood and grew the spirochetes. The Doctor was so happy to tell me (while charging me another $1000) that his clinical diagnosis was correct, that I did in fact have Lyme disease. I also had low natural killer cells titers which is another important test that most doctors miss. I was also positive for a dozen or more other Tickborne infections. No wonder I was so sick! After finding a Lyme literate doctor and accurate testing, I was still only halfway there. I still needed treatments and the money to pay for all of it. The treatments are brutal.  Most cannot tolerate standard antibiotic treatments. I know I couldn't. The amount of antibiotics that I needed to kill the Lyme plus all my coinfections would have killed me. The alternative treatments were just as brutal but more tolerable. The cost for these treatments ranged from hundreds of dollars a month to thousands. Over the years, I quit counting my out-of-pocket expenses when it reached over $150k. Am I rich? Nope, just desperately sick.

Just when I thought this horrible disease couldn't get any worse, I discovered that I passed on Lyme disease to all three on my children. After 17 years of seeing doctors, traveling to get treatments, testing, torture, tens of thousands spent, I am still not recovered. And now I fight not just for my own life but to save my children's futures.

In summary, the lack of knowledge in the medical field today regarding Lyme disease is astounding. The standardized testing is highly inaccurate, the cost of treatments is not affordable and the lack of efficacy in treatment protocols is shameful. I would not wish this disease on my worst enemy. The Lyme community needs to be heard by our government officials who can make changes in the healthcare system. We need funding for research, doctors need more education, and patients need accurate testing and efficient treatments.

Submitted by [REDACTED]
Henderson, NV
Organization: LivLyme Foundation

Malkie Davidson

We must recognize at this point that COVID-19 is not unique with its long-term complications and resulting autoimmunity. Many have seen this for years with Lyme and many other infections.

This is in all likelihood possible with any disease process or immune trigger that hits an individual hard.

Now is the time to start believing, researching and supporting long haul Lyme and related infections.

With our nation's - and world's - up-close and personal experience, no longer can we justify dismissing and forcing others to live with very real and devasting post-infectious and autoimmune symptoms, simply due to the medical establishments' ignorance or apathy.

Malkie Davidson, PsyD

Anonymous 4

Dear Members of the Tick-Borne Disease Working Group:
I am writing to share my experience as the spouse of a person who acquired Alpha-Gal Syndrome (AGS), and to advocate on his behalf, and on the behalf of others with this diagnosis.

My concerns are primarily in two areas:

Lack of awareness in the medical and pharmacy community about AGS
	Food ingredient labelingIn 2018, my husband had a bad case of what we thought was poison ivy. After being treated with oral steroids for a month, we gave up trying to treat it. Over the next two years, he went to the dermatologist at an academic medical center multiple times. Some of the diagnoses he was given are as follows:

You have scabies
You are allergic to ibuprofen
You are allergic to omeprazole
You are using too much soap

He was treated for scabies twice, was treated three times a week with UV light therapy, was given a drug for leprosy (which caused severe bone pain), was prescribed three different antihistamines a day, and received an allergy test on his back. He kept a month-long food journal and returned to the dermatologist with a suspicion that he AGS and was told that he did not.

He was finally able to convince his primary care physician to refer him for AGS allergy testing, and his test was positive. In the two years that it took to receive his diagnosis, he visited urgent care with increasing frequency, and either self-managed his reactions (some of which we later learned were anaphylactic in nature), or went to the emergency room in the middle of the night. After his diagnosis, our next challenge began: buying food.

We joined a Facebook support group and found many valuable tips about living with this syndrome, but buying food is a nightmare. Ingredient labels are tiny, and “natural flavor” on a label could mean a number of things, including mammal products. Preparing our own foods has been challenging, and eating at restaurants is usually out of the question. Even if we explain the allergy to the server, there is no guarantee that the chef or cook will be vigilant to search all ingredients for things that could send us to the emergency room. Going out of town for even one night is difficult.

And although he has AGS in his patient file at the pharmacy, whenever he is prescribed a new medication, he has to ask about the ingredients. Sometimes he has to get a different prescription at that point, after the pharmacist double-checks. While he has not had push-back from pharmacists, we know other AGS patients whose pharmacists have told them they would need to contact the manufacturer themselves.

I understand that he was lucky to be diagnosed in only two years. I believe the average time to diagnosis is around seven years. We had little to no help from the medical community, and although they tested and attempted to treat him for other things, we only received a diagnosis after doing our own research, carefully tracking his food intake and reactions, and insisting that he receive the appropriate test.

Physicians and nurses should be educated about AGS. My husband could have died multiple times during the two years that we sought a diagnosis. No medical professional ever suggested to him that he could have AGS. They simply treated him and sent him home. Pharmacists should be aware of AGS, and if a patient’s file indicates AGS, this should raise a flag in their system so the patient does not receive a medication that could harm instead of help. And finally, food labeling needs to be more complete. Trial and error is costly and can even be deadly.

Thank you for the opportunity to provide comments.

Sincerely,
[REDACTED], MSHA
Birmingham, AL

Dorothy Leland
Davis, CA
President, LymeDisease.org

Dorothy Leland

The following is my "Touched by Lyme" blog from October 11, 2022:

After 6 years of TBDWG, are we still stuck with IDSA guidelines?
When I was watching last week’s online Tick-Borne Disease Working Group meetings [Oct. 4-5], I got a sick feeling in my stomach.

It came at the end of the first day, when after hours of watching this stuff on my computer screen, my brain was turning to mush anyway.

Then, my ears perked up. Dr. Elizabeth Maloney—who ably represents the interests of Lyme patients and their treating doctors on this panel—asked a question of the CDC’s Sue Visser.

Earlier in the meeting, Visser had given a presentation about the US Department of Health and Human Services’ national strategy to combat vector-borne diseases (which the CDC plays a big role in).

Vector-borne diseases (VBD) include those carried by mosquitoes, fleas and ticks—so Lyme disease is part of that mix.

Maloney wanted to know more about the role of medical guidelines in the VBD strategy. Specifically, she asked if the agencies included public stakeholders in the process of developing guidelines.

“Yes, we do,” Visser answered firmly.

(Let me emphasize how important public input is to the Lyme community. For years, the CDC and other federal entities have endorsed the IDSA’s Lyme guidelines—which allow no meaningful input from public stakeholders while at the same time actively HARMING Lyme patients. The need for public input was a driving force in the Lyme community’s push for the formation of the TBDWG in the first place.)

When Maloney asked Visser to elaborate on the public input process, the CDC employee said:

There’s certain guidance that’s developed by other professional organizations and we rely upon them because they have convened the experts and they publish guidance and then we reference that guidance. In the area where there is not development by appropriate clinical professional society, for example, Rocky Mountain spotted fever, we waited and we put out clinical guidance for that...If we are developing from scratch the guidance, there’s actually a protocol for patient involvement, external feedback, external participation in the process...but in the case of an issue or disease where there is already lots of clinical interest and leadership, then we defer.

“Then we defer...”

That’s kind of wordy, don’t you think? Let me drill down to what she’s basically saying: The VBD national strategy will use the IDSA Lyme guidelines, period. Because, hey, they’re the experts. When they speak, then we defer...

Maloney tried to press the point about the IDSA guidelines not following accepted guidelines development practices (for example, allowing public input). But Visser sidestepped the question, and for the moment, the subject was dropped.

Getting back to that queasy feeling in my stomach: Have we really slogged through six years of Working Group effort, only to be stuck with the dangerous, anti-patient IDSA Lyme guidelines? (See: 10 things you should know about the IDSA Lyme guidelines. https://www.lymedisease.org/10-things-new-idsa-guidelines/)

The CDC and its sister agencies have deferred to the IDSA’s Lyme guidelines for years now. That’s a huge factor in why Lyme patients can’t get the care they need. And a big reason that the CDC website continues to have inaccurate, damaging information on its Lyme-related web pages. (See: What the CDC gets wrong about Lyme disease on it's website. https://www.lymedisease.org/cdc-lyme-pages-need-modifications/)

The Tick-Borne Disease Working Group is nearing the end of its run. As the current (third) iteration of the panel prepares to submit its Report to Congress in December, the big question is “what happens next?”

The TBDWG still has decisions to make. Stay tuned.

TOUCHED BY LYME is written by Dorothy Kupcha Leland, President of LymeDisease.org. She is co-author of When Your Child Has Lyme Disease: A Parent’s Survival Guide.

Lonnie Marcum

I’d like to thank all the members of the TBDWG for your service. I have been witness to every meeting since the groups’ inception and am really impressed at the progress that has been made over the past six years, including the adoption of a national strategy for vector-borne disease, the inclusion of Alpha-gal syndrome and maternal Lyme disease on the CDC website.

While we have made some progress, we still have work to do.

These are my top priorities:

First and foremost, we need a better diagnostic test for Lyme disease. A perfect test would be 100% sensitive and could also determine when the infection has been cured.  Accurate early diagnosis would improve treatment outcomes and lead to fewer patients with persistent symptoms.

Currently, there are three main hypotheses regarding potential mechanisms of chronic Lyme: immune inflammation and dysregulations; persistent infection and/or lingering antigens including co-infectiions; and neural network alterations. (Bobe 2021) An accurate diagnostic would solve the question of which treatments are most effective and it would end the controversy of when and how frequently persistent infection is the cause of persistent symptoms.

Because ticks carry multiple human pathogens, ideally we could develop a single test that is capable of detecting the most common tick-borne pathogens in humans similar to the veterinary panel used for dogs.

Second, we need better treatments and treatment options for Lyme disease, including off-label and combination use of FDA approved medications. For instance, a 2019 study out of Johns Hopkins University found that a triple-drug combination was the only method successful in eradicating the infection in mice. (Feng 2019)

Even in a best case scenario following acute diagnosis of Lyme disease 29% of patients treated with current IDSA recommended courses of antibiotics continue to have moderate to severe symptoms. (Aucott 2013) And for patients who are misdiagnosed and/or receive a late diagnosis the treatment failure ratio is even higher. (Johnson 2018 )

In fact, a delayed diagnosis is a huge contributing factor as to why so many patients are left with debilitating symptoms after standard treatment for Lyme. (Hirsch 2018) During the months to years that patients are suffering, the untreated infection spreads throughout the body, embedding itself deeply into connective tissues where standard antibiotics have a hard time reaching. (Embers 2012, Cabello 2017, Caskey 2015) One study demonstrated a delay in treatment by as little as 9-19 days is predictive of persistent Lyme symptoms. (Bouquet 2016)

Third, we need to update the treatment recommendations on the CDC website to include patients with neurological Lyme disease and persistent symptoms following treatment.  Unfortunately, there is no standardized treatment for this patient population. The last NIH-funded treatment trial for patients with persistent Lyme disease was nearly 15 years ago and it did not reveal a solution. (Klemper 2001, Krupp 2003, Fallon 2008, Fallon 2012, Goswami 2013)

Lyme arthritis is the best understood and most studied manifestation of Lyme disease. Even Dr. Allen Steere, who first described Lyme arthritis in 1979, prescribes longer courses of antibiotics. (Steere 1979) In 2015, Dr. Steere wrote: "In our experience, some patients do require longer courses of antibiotic therapy for effective treatment of Lyme arthritis. Thus, if there is mild residual joint swelling after a 30-day course of oral antibiotics, we repeat the oral antibiotic regimen for another 30 days. However, for patients who continue to have moderate-to-severe joint swelling after a 30-day course of oral antibiotics, we treat with IV ceftriaxone, 2gm/day. Although there is trend toward greater efficacy with 4 weeks compared with 2 weeks of antibiotics, there is also a greater frequency of adverse events." (Arvikar, Steere 2015)

The CDC needs to include the extended treatment options for Lyme arthritis to patients with persistent neurological symptoms following standard treatment.

Fourth, remove the recommendation of a single dose of Doxycycline from the CDC website listed as “Tick Bite Prophylaxis.” The fundamental goal of health care is to help patients find a rapid and proper diagnosis, receive the appropriate treatment, and return to a normal health. To shorten the duration of illness it is imperative that the CDC recommend only those treatments that will reduce the number of people who remain ill following treatment for Lyme disease.

What we know from animal studies is that under-treatment of Lyme disease is predictive of persistent Borrelia burgdorferi infection. (Bobe 2021)  How many patients with chronic symptoms of Lyme disease are a result of under-treatment with doxycycline? Doxycycline is a bacteriostatic drug meaning it does not kill Borrelia. Rather, in ideal environments, Doxy slows the growth of the bacteria long enough for the immune system to recognize and kill it.

Current evidence DOES NOT support a single dose of doxycycline, because it DOES NOT ensure the best outcome for patients with Lyme and other tick-borne diseases. I would ask that the Tick-borne Disease Working Group encourage the CDC to remove the recommendation of Doxycycline prophylaxis until further proof exists of the ability for a single dose of Doxycycline to kill Borrelia burgdorferi in humans.

Fifth, we need to design treatment trials for patients with co-infections including bartonella—one of the most common vector-borne disease in the world today. The issue with many of these co-infections is they are not all treated with the same prescription medication as Lyme disease. For instance, a patient may receive a diagnosis of Lyme and be prescribed an antibiotic, but they may also have an undiagnosed babesia infection which requires an anti-parasitic medication. As a result, this patient may not return to health until all the infections are treated properly. Unfortunately, there are no clinical trials on the most effective method to treat patients with co-infections.

Sixth, I would suggest that all laboratory research be scrutinized for the method of innoculation (how the animal is infected.) Recent discoveries as to the contributing factors of tick saliva in the transmission of Borrelia and other pathogens warrants a stronger look. During feeding the composition of proteins in tick saliva changes to include mechanisms that block pain and itch, dilate blood vessels, prevent the blood from clotting, and suppress the host immune response. (Bobe 2021) Not only do these salivary molecules affect the host they also trigger and potentially alter the pathogen(s). Without the presence of tick saliva it is possible researchers are not seeing the true pathogenicity of Borrelia and other tick-borne pathogens. Any tick-borne disease studies done in the laboratory should be done via tick inoculation rather than needle inoculation.

Finally, we need to improve clinician education to include the fact that an erythema migrans (EM) rash rarely presents as a bull’s eye shape. While a bull’s eye rash is diagnostic of Lyme disease a recent study found only 6% of Lyme lesions looked like a bull’s eye or ring-within-a-ring. (Schotthoefer 2022) Unfortunately, the misconception of a classic bull’s eye rash often leads to people being told they do not have Lyme disease when they actually do.

Thank you for your time,

Lonnie Marcum, PT
Health and Science Writer for LymeDisease.org
California

References:
Arvikar, S. L., & Steere, A. C. (2015). Diagnosis and treatment of Lyme arthritis. Infectious disease clinics of North America, 29(2), 269–280. https://doi.org/10.1016/j.idc.2015.02.004

Aucott JN, Rebman, AW. Crowder, L.A.; Kortte, K.B. (2013) Post-treatment Lyme disease syndrome symptomatology and the impact on life functioning: Is there something here? Qual. Life Res. 2013, 22, 75–84. doi: 10.1007/s11136-012-0126-6

Bobe JR, Jutras BL, Horn EJ, Embers ME, Bailey A, Moritz RL, Zhang Y, Soloski MJ, Ostfeld RS, Marconi RT, Aucott J, Ma'ayan A, Keesing F, Lewis K, Ben Mamoun C, Rebman AW, McClune ME, Breitschwerdt EB, Reddy PJ, Maggi R, Yang F, Nemser B, Ozcan A, Garner O, Di Carlo D, Ballard Z, Joung HA, Garcia-Romeu A, Griffiths RR, Baumgarth N, Fallon BA. (2021) Recent Progress in Lyme Disease and Remaining Challenges. Front Med (Lausanne). 2021 Aug 18;8:666554. doi: 10.3389/fmed.2021.666554. PMID: 34485323; PMCID: PMC8416313.

Bouquet J, et al (2016) Longitudinal Transcriptome Analysis Reveals a Sustained Differential Gene Expression Signature in Patients Treated for Acute Lyme Disease. Am Society Micro. DOI: 10.1128/mBio.00100-16

Cabello FC, Godfrey HP, Bugrysheva JV, Newman SA. (2017) Sleeper cells: the stringent response and persistence in the Borreliella (Borrelia) burgdorferi enzootic cycle. Environ Microbiol 19(10):3846-3862, 2017. doi: 10.1111/1462-2920.13897

Caskey JR, Embers ME. (2015) Persister Development by Borrelia burgdorferi populations in vitro. Antimicrob Agents Chemother 59(10):6288-6295, 2015. DOI: 10.1128/AAC.00883-15

Fallon BA, Keilp JG, Corbera KM, Petkova E, Britton CB, Dwyer E, Slavov I, Cheng J, Dobkin J, Nelson DR, Sackeim HA. (2008) A randomized, placebo-controlled trial of repeated IV antibiotic therapy for Lyme encephalopathy. Neurology. 70(13):992-1003. doi: 10.1212/01.WNL.0000284604.61160.2d. Epub 2007 Oct 10. PMID: 17928580.

Fallon, Brian & Petkova, Eva & Keilp, John & Britton, Carolyn. (2012). A Reappraisal of the U.S. Clinical Trials of Post-Treatment Lyme Disease Syndrome. The open neurology journal. 6. 79-87. 10.2174/1874205X01206010079.

Feng J, Shi W, Zhang S, Sullivan D, Auwaerter PG, Zhang Y. (2016) 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. 23;7:743. doi: 10.3389/fmicb.2016.00743. PMID: 27242757; PMCID: PMC4876775.

Feng, J, Li T, Yee R, Yuan Y, Bai C, Cai M, Shi W, Embers M, Brayton C, Saeki H, Gabrielson K, Zhang Y. (2019) 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 27(148):125-138.  http://www.discoverymedicine.com/Jie-Feng/2019/03/persister-biofilm-microcolony-borrelia-burgdorferi-causes-severe-lyme-arthritis-in-mouse-model/

Goswami ND, et al. (2013) The state of infectious diseases clinical trials: A systematic review of clinicaltrials.Gov. PLoS ONE 2013, 8, e77086. doi: 10.1371/journal.pone.0077086

Hirsch AG, Herman RJ, Rebman A, et al (2018) Obstacles to diagnosis and treatment of Lyme disease in the USA: a qualitative study. BMJ Open 8:e021367. doi: 10.1136/bmjopen-2017-021367

Johnson, L., Shapiro, M., & Mankoff, J. (2018). Removing the Mask of Average Treatment Effects in Chronic Lyme Disease Research Using Big Data and Subgroup Analysis. Healthcare (Basel, Switzerland), 6(4), 124. https://doi.org/10.3390/healthcare6040124

Klempner MS, Hu LT, Evans J, Schmid CH, Johnson GM, Trevino RP, Norton D, Levy L, Wall D, McCall J, Kosinski M, Weinstein A. (2001) Two controlled trials of antibiotic treatment in patients with persistent symptoms and a history of Lyme disease. N Engl J Med. 345(2):85-92. doi: 10.1056/NEJM200107123450202. PMID: 11450676.

Krupp LB, Hyman LG, Grimson R, Coyle PK, Melville P, Ahnn S, Dattwyler R, Chandler B. (2003) Study and treatment of post Lyme disease (STOP-LD): a randomized double masked clinical trial. Neurology. 60(12):1923-30. doi: 10.1212/01.wnl.0000071227.23769.9e. PMID: 12821734.

Logigian EL, Kaplan RF, Steere AC (1990). “Chronic neurologic manifestations of Lyme disease”. N. Engl. J. Med. 323 (21): 1438–44. doi:10.1056/NEJM199011223232102. PMID 2172819.

Novak P, Felsenstein D, Mao C, Octavien NR, Zubcevik N (2019) Association of small fiber neuropathy and post treatment Lyme disease syndrome. PLoS ONE 14(2): e0212222. https://doi.org/10.1371/journal.pone.0212222

Schotthoefer A M, Green C B, Dempsey G, et al. (October 25, 2022) The Spectrum of Erythema Migrans in Early Lyme Disease: Can We Improve Its Recognition?. Cureus 14(10): e30673. doi:10.7759/cureus.30673

Steere AC, Gibofsky A, Patarroyo ME, Winchester RJ, Hardin JA, Malawista SE (1979). “Chronic Lyme arthritis. Clinical and immunogenetic differentiation from rheumatoid arthritis”. Ann. Intern. Med. 90 (6): 896–901. doi:10.7326/0003-4819-90-6-896. PMID 312615.

Alexandra Michele Bambery

Greetings it is an honor and privilege to be able to write today,

I’m so frustrated with myself and ashamed to have let my company down. I keep crying today.

I miss my old life so much. I miss my pcp I trusted.  Last time I spoke, to this working group, I was in a state of shock. I was not even aware of what I was saying.

I can’t believe this is my life is how I feel somedays.

The gaslighting in the medical arena, with chronic neuropathic pain, ruined my mind. My confidence and self esteem, have been affected severely.

[REDACTED] taught me a lot about disability rights. I loved working hard for them. Unfortunately, tick borne illness took everything from me I worked so hard for, it took my identity away. I feel embarrassed of who I am versus who I wanted to be career wise at this stage of my life.

I don’t give up despite a chronic pain diagnosis making things extra hard, I’m currently engaged in efforts to secure funding to help Vermonters have better quality of life especially in old age, or if they become disabled or are a veteran and have served our country.

There is a program in Vermont called the Green Mountain Passport program; I want to help expand this program and also use nutrition in addition to access to green space to help heal our community suffering from now mental health issues then before. But I fear retaliation, my family does not think “Im really sick”. Lyme stigma is unfortunate.

Bartonella infection after a tick bite in June 2021 left me really messed up. I’m Better now but still needing appropriate treatment. Instead I keep hitting roadblocks, it’s hard being sick in this complex healthcare system.

Chronic Lyme took away my life, my job, my relationships, my hope to have my own family— but not my hope of owning my own small business and working from home.

Stable housing is key to my resiliency and prognosis like everyone else.

I recently had the pleasure of meeting Dr Levine in Vermont who mentioned our housing situation as well.

I hope to be able to make a difference in my community now that I have found a supportive environment at home where I’m safe managing my chronic pain and other invisible neurological conditions that are times are debilitating.

I hope to get support to have a wellness consulting business inspired by the legacy of Clara Barton.

Like long haul Covid, late stage Lyme is very serious.

I appreciate the work everyone has done to get improvements made so others don’t end up suffering in this much pain like me.

I can’t stop thinking: I’m not the only one sick.

Others have it even worse.

This bothers me. A lot.

Most people are too sick to even write. I know because this happened to me.

I am grateful for the opportunity to be heard.

Thank you sincerely for your hard work Department Of Health and Human Services and others on this working group.

In gratitude
Alexandra-Michele
Burlington, VT USA

Trinette Zizzo

I have two concerns that I'd like to bring up related to the Alpha-gal allergy.

The first concern involves the lack of knowledge of Healthcare providers.  I'm lucky to have a knowledgeable PCP, however, allergists seem less aware.  This sentiment is echoed by everyone who I know who also has this allergy.  It is not safe for an allergist to tell someone who almost died from anaphylactic shock from this allergy, that dairy shouldn't be a problem and to wonder why an allergic reaction occurs to dishwashing detergent - both of which I was told during two separate appointments.  For the record, most detergents have mammal byproducts.  We, those of us with this allergy, have had to figure out on our own what products contain, or might contain, mammal byproducts.  Of all the people and health professionals that we should be able to reach out to regarding our allergy, allergists should be the first.  For so many of us, allergist are the least supportive and the least knowledgeable.  That's absolutely shameful.  There are some that have a lot of experience with this allergy and have learned a lot as a result.  I can understand and accept an allergist or other healthcare professional not having experience with this less well known allergy, but I can't accept willful ignorance.  I'm afraid to go to the dentist because I don't know if it's safe.  I don't know if the dentist has safe mammal free products to work on me.

The second item I'd like to bring up is the lack of identification of mammal byproducts on products, especially food and medicine.  There really needs to be some identification.  A real life example of this is the cold I currently have.  Prior to this allergy, my goto for a cold was Sudafed.  Magnesium Stearate is one of the ingredients.  I wasn't sure what I could take to relieve my symptoms, but I had to take something.  I took the risk because I was hoping for relief.  My reactions to trace amounts of mammal is minimal, but some people have more significant reactions.  It would be better if we could identify if foods and medicines are safe.  It is quite daunting to stand in the medicine aisle looking at all the medicine and struggling to find one that is safe for whatever ailment.  Even pharmacists don't necessarily know how some of the ingredients are sourced.  In my opinion, a simple statement on the packaging that one or more of the ingredients are mammal sourced would be a good thing.

Thank you for listening to my concerns.

Trinette Zizzo
Medford, NY

Anonymous 5

Hello,

I would like to be identified as [REDCATED] for my posted comment. I am from Pennsylvania. Thank  you for taking the time to read my story and thoughts. It would be longer but I am ill from tick borne disease.

My name is [REDACTED]. I live in Pennsylvania. Several months ago I was just like any other ordinary healthy 31 year old woman. I had hopes, dreams, and plans for the future.  The life I was living now feels like a distant memory. I was thrust into the world of tick borne disease and have quite literally been fighting for my life ever since.

I don’t know when the tick bite happened. I never saw a tick on my body. I also never got the famous bullseye rash. However, I’ve come to find that this is quite common. Many people don’t get the rash and many don’t see the tick. Just because you didn’t see the tick doesn’t mean you haven’t been bitten. When you consider the fact that ticks can be as small as the size of a pin head it is easy to understand how this can happen.

I live in an area endemic to ticks. My home is surrounded by fields and woods. There have been countless times I have gone for walks on the land surrounding my home or have done yard work  and was exposed to ticks.

I never really thought about Lyme disease before this happened. My son and my Mom both got Lyme Disease back in 2017. However they both had the bullseye rash and were appropriately treated with a course of antibiotics and have been fine ever since. Their experience was much different from the hell that I have been living in.

My story starts sometime in June of 2022. I started having some pain in my left wrist, hand, and forearm. I would also get tingling in my hand and fingers. Soon after it started happening on the right side as well. I wasn’t overly worried about it. I had that happen on and off over the past 3-4 years and thought that I was getting carpal tunnel. I figured it wasn’t that bad and I would have it taken care of eventually. By the beginning of August it started getting worse. The pain spread to my ankles and my legs. My shins started hurting as well as my feet and the muscles in my upper legs. I actually went to the emergency room because I was starting to be concerned and realized at this point that this most likely was not carpal tunnel.

The doctor at the emergency room told me that it could possibly be rheumatoid arthritis or Lyme Disease. They did the ELISA and the Western Blot tests and sent me on my way.

The ELISA came back with a high antibody number. The Western Blot results show that I am positive for Igg anti bodies for Lyme bands 39, 41, 58, and 93. The test came back as “Negative” because I was positive for 4 bands and not 5. At that point I still didn’t suspect Lyme Disease because like a fool I still trusted the CDC and their inaccurate guidelines. I hadn’t educated myself yet. Up until this point in my life the healthcare system hadn’t let me down.

Soon after my trip to the emergency room I went to visit my PCP. The symptoms were quickly getting more strange and severe. I started getting a sensitive scalp, strange head pressure, headaches, a stiff neck, brain fog, heart palpitations, eye pain, lightheadedness,  and a tingling/burning face. It was downright terrifying! Up until this point I have always been very healthy.

My pcp told me that my symptoms really sounded like Lyme Disease to her. She acknowledged that my test was “Negative” per CDC standards but that Lyme Disease can be tricky. She then prescribed me 3 weeks of Doxycycline. Over the course of those 3 weeks I slowly started feeling better. I never went back to normal but was very much improved. After the 3 weeks my doctor didn’t renew the prescription and said we would see how I do. Within 3 days of being off of the Doxy my symptoms came back with a vengeance and I called her and begged for more Doxy. My body felt like it was on fire! The burning was very intense, along with muscle cramps, muscle spasms, and a whole list of other symptoms.  At this point I truly believed the Lyme Disease diagnosis because why would it get better with antibiotics and come back once I stopped taking them? Only bacteria will respond to an antibiotic so I obviously have a bacterial infection. Also my symptoms are like no other disease I’ve ever even heard of before. This was the point where I started heavily researching Lyme Disease and the common co infections that tend to go along with it.

I quickly got myself to a Lyme Literate doctor and have been diagnosed with Babesia and Bartonella in addition to Lyme Disease.

These are three separate complex infections that all require different treatment. All of these take a lot of time and multiple medications. You need to kill the bacteria/parasites through all of their life cycles. Also bacteria like to protect themselves with biofilms, fibrin nests, etc. My head is literally spinning with the amount of information that I have needed to learn about this so that I can be an active part of my health care.

Knowing what I now know, I still kept my scheduled appointment with a local infectious disease doctor. I was warned by others with Lyme Disease and co infections that going to an infectious disease doctor would be a waste of my time. I went anyway to be sure.

It ended up being a waste of my time. The doctor told me that there is no way I could have Lyme Disease. She said my symptoms aren’t the same as Lyme Disease (she wasn’t even thinking about co infections) and even took it one step further and said that she couldn't even be sure that I had ever been exposed to it. I pointed out to her that I live in an endemic area and tested positive for 4 bands of Lyme, so clearly I have been exposed. She then proceeded to tell me that there are other things that can cause those bands to show as positive. She is partially right. I know that with bands that are not specific to Lyme Disease that can happen. However, I am also aware that bands 23, 31, 34, 39, and 93 are Lyme Specific, meaning that nothing else can cause those to show as positive. Two of the bands that I tested positive for are specific to Lyme which means that I have indeed been exposed. This is a fact that she seemed completely ignorant to and I decided not to argue with her. It’s sad when the patient is more informed on something than a doctor that spent many years in medical school. I was also very unimpressed with the fact that she kept trying to insinuate that I could have carpal tunnel even though I have many symptoms that carpal tunnel doesn’t cause.

I am deeply disappointed, disturbed, disgusted, and outraged at the way things currently are as far as healthcare for tick borne disease. Most doctors are not informed on Lyme Disease and co infections. There are some doctors out there who I am sure see what is happening with their patients and suspect Lyme Disease but then don’t treat it because they are afraid of having their license taken away. This is all outrageous to me!!! A doctor should be allowed to provide treatment to their patient if the treatment makes the patient improve. That’s it. Also all doctors need to be getting properly informed about Lyme Disease and co infections. If you get these infections and go undiagnosed, they don’t just magically go away. They need to be treated and that treatment is much more complex than a few rounds of Doxy. I want to see treatment become more available and I would like treatment  to be covered by insurance. These infections are very serious and debilitating and should be treated every bit as seriously as cancer.

Also all of the testing needs to improve. The Western Blot test is over 40 years old!! It doesn’t even test for every band of Lyme Disease. In addition to that it only tests for antibodies, not the actual bacteria. And even worse, it’s really only for acute infection. These tests are notoriously inaccurate as well as the tests for the other co infections. When your immune system is worn down and not fighting these stealth pathogens properly, it affects the test results.  We need testing that is more sensitive and that isn’t only for acute cases. There is much more that can be done if it would get the proper attention and funding.

Many people are sick and dying. This includes children! It makes me sick to my stomach. It’s time for the CDC and the ISDA to cut the crap and start doing something about this epidemic. Every person who knows the truth about Lyme Disease and other tick borne infections and chooses to continue to let people suffer is a monster!!! I don’t know how you people sleep at night. Do the right thing.

Best Regards,
[REDACTED]

Anonymous 6

I have left comments before and frankly am not impressed with what has been accomplished by the working group.  We still do not have much needed research on the broken immune systems of Lyme patients.  The NIH and NIAID conducted a study on the damaged immune systems of Asians with non HIV AIDS and discovered that they were building auto antibodies to interferon gamma.  Where are our studies and research ? It appears that the NIH and NIAID and CDC are more interested in developing a vaccine instead of searching for a cure or understanding the pathogens.

I have been bitten multiple times and even though I had a positive western blot could not find any infectious disease physician that would treat.  It took a lot of begging to get [REDACTED] IDSA to run a western blot in Florida and she said she would not see or talk to me again and if positive, I should fly to New York or some northern state and look for a physician that would treat me.  Same exact thing happened to my only child when even more ill.  She had a positive ELISA followed by a positive western blot and many abnormalities in her blood work and many co infecting agents.  No one would treat a 15 year old for lyme in many counties in Florida.  One idiot of a pediatric infectious disease physician at USF. [REDACTED] called me to tell me that she thought my daughter had a hormonal problem and they saw this in high achieving girls and that she would be in and out of school and a psychiatrist/psychologist would be helpful.  My daughter had B hermsii, Ehrlichia Chaffeensis, Babesia, Bartonella and  common variable immune deficiency and MGUS as well as B burgdorferi.  The way lyme patients are mistreated is simply criminal.  We are hard pressed to find physicians that accept insurance to treat us and they are not aware of lyme and co infections.  Many people have spent a fortune on medical personnel that do not accept insurance.  This has got to stop !

Over the years I have met many people with lyme and co infections and many have these issues but do not test positively on a western blot.  Congenital transmission has been proven and again the medical field has no idea what to do for a lyme patient nor do they care to.  They have not read the research and make such idiotic remarks it is simply disgraceful.  The research articles proving chronicity are there and the articles outlining what bodily systems lyme can affect are also there.

I am disgusted with the lack of proper medical care all of us have received and am now blind in my left eye as a result of lyme with many auto immune conditions and now Common Variable Immune Deficiency.  How has our government in one of the richest countries of the world allowed this to happen to so many suffering people ?  I have many friends that have died prematurely due to lyme and co infections.  Frankly, I blame our government and their collusion with the criminal Infectious Diseases Society Physicians IDSA.  I think the lyme denialists at the IDSA should be prosecuted.

Just sign me disgusted and disillusioned in Florida.  [REDACTED]   cell is [REDACTED]

                    
  


Content created by Office of Infectious Disease and HIV/AIDS Policy (OIDP) Content last reviewed November 21, 2022Back to top
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