The tenth meeting of the Tick-borne Disease Working Group will be from 8:30 a.m. to 5 p.m. ET. For this meeting, the Working Group will receive reports from the eight subcommittees that were formed during the June 4, 2019, meeting and continue to focus on plans to develop the next report to the HHS Secretary and Congress on federal tick-borne activities and research, taking into consideration the 2018 report.
Members of the public can attend the meeting via webcast. Instructions for attending this virtual meeting will be posted prior to the meeting.
Public Comment – Information and Instructions
The public will have an opportunity to present their views to the Working Group during the meeting’s public comment session or by submitting their views in writing.
Verbal comments:
Requests to provide verbal public comment must be submitted via email by midnight Wednesday, September 4, 2019, ET to tickbornedisease@hhs.gov. In the Subject line please enter: Verbal Public Comment – September 4 Meeting.
A total of 30 minutes has been set aside for verbal comments. Each person will be limited to 3 minutes in order to accommodate as many speakers as possible. If more requests are received than can be accommodated, speakers will be randomly selected.
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Written comments (posted on this webpage and accessible to the public):
Written public comments must be submitted via email by midnight Wednesday, September 4, 2019, ET to tickbornedisease@hhs.gov. In the Subject line please enter: Written Public Comment – June 4 Meeting.
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The letter in the link above was written by microbiologist Tom Grier, who is director of pathology studies for the Dr. Paul H. Duray Pathology Fellowship.
In it, he explains why Lyme disease is so confusing, what the medical experts got wrong, and the following untrue facts have been disseminated by the IDSA, CC, NIH, Yale, Harvard, SUNY, and Mayo Clinics for decades:
Only blacked-legged ticks transmit Lyme
Lyme is not congenital
Lyme is not intracellular
Lyme stays in the blood and doesn’t enter the brain
Elisa tests are 99% accurate
Lyme does not persist beyond 28 days of antibiotics
Lyme is mainly an arthritic disease
Lyme is mainly found in the NE USA
The Lymerix vaccine had no side effects and was pulled because of anti-vaxx hysteria
Grier also has more than 100 references and photos proving pathogen persistence after antibiotic treatment.
It’s Time to Get Serious about Tick-Borne Diseases
The U.S. vanquished malaria and beat back AIDS, but Lyme and other illnesses are raging unchecked
In the article in the above link, the author compares the treatment of Lyme/MSIDS patients with how those with AIDS were treated in the 80’s. She notes that patients with tick-borne diseases are dismissed similarly to how AIDS patients were, and are labeled anti-science, and are summarily denied insurance reimbursement. The author also compares the fact there are over 11,500 studies on AIDS compared to the 55 for Lyme.
West Nile virus, which currently infects about 2,000 people annually in the U.S. received $42 million from the U.S. National Institutes of Health
Lyme disease, which has 20 times the number of reported cases, got half as much
Evidently that number hasn’t budged in a decade.
She then aptly points out:
Zika, another mosquito-borne virus infecting just seven U.S. people in 2017, obtained $1.1 billion from Congress
Lyme, admittedly underreported, yet estimated to be potentially 427,000 new cases per year, received just $90 per new case from the NIH and $35per new case from the CDC compared to $53,571per new case of HIV/AIDS from the NIH and $14,054 per new case of HIV/AIDS from the CDC according to The Tick borne disease working group (TBDWG). The report states federal funding for Lyme disease has failed to increase as the problem has grown.https://undark.org/2018/09/06/lyme-research-funding/
I agree whole-heartedly with the author that precious time has been wasted and that research funding is “paltry and static.”
I think we would disagree; however, on how research dollars should be spent. If we are to truly “get serious,” we need to admit that the statically paltry research dollars need to go toward issues that directly affect patient well-being. I say, “NO MORE” funding on climate data which has not and will not help suffering Lyme/MSIDS patients. We need to start over with a blank slate. This complex illness is NOT what we’ve been told it is. There is much indicating it’s a STD, is spread congenitally, and potentially by other insects. We still don’t have accurate testing that picks up ALL pathogens involved. We still don’t have adequate treatment. And, we still don’t have a means of paying for treatment. There are so many other important issues that haven’t been addressed in over 40 years when the initial outbreak happened.
If we are truly serious, we need to care where the research dollars go.
“Mommy, I just want to die:” Mother recalls daughter’s fight against Lyme disease
AUG 21, 2019 —
The 3rd letter below addressed to Cynthia L. Sears, MD, FIDSA, President of the IDSA highlights yet another example how Lyme is “destroying lives, ending careers while leaving its victim in financial ruin.”
#1. It’s time to recognize that we need an entirely different approach; anything less is inhumane
——– Original Message ———-
From: CARL TUTTLE <runagain@comcast.net>
To: csears@jhmi.edu
Cc: PracticeGuidelines@idsociety.org, tickbornedisease@hhs.gov, chris.smith@mail.house.gov, (88 Undisclosed recipients)
Date: August 20, 2019 at 9:22 AM
Subject: ‘Mommy, I just want to die:’ Mother recalls daughter’s fight against Lyme disease
On Aug 17, 2019 Carl Tuttle wrote:“I have 1,100 pages of comments describing a disease that is destroying lives, ending careers while leaving its victim in financial ruin. This PDF file is evidence that the Infectious Diseases Society of America has grossly misrepresented the disease and has left the horribly disabled to fend for themselves when the one-size-fits-all treatment guideline fails.”
Aug 20, 2019
IDSA
1300 Wilson Boulevard
Suite 300
Arlington, VA 22209
Attn: Cynthia L. Sears, MD, FIDSA, President
Re: Draft Lyme Disease Guidelines Public Comment
Dear Dr. Sears,
We can add the following article to the growing number of patients describing a disease that is “destroying lives, ending careers while leaving its victim in financial ruin.”
August 20, 2019
‘Mommy, I just want to die:’ Mother recalls daughter’s fight against Lyme disease
Though Nicole’s doctors prescribed her a year’s worth of antibiotics that Jennifer said saved her daughter’s life, allowing her to go to college, become a nurse and later, a mother of three kids, Auwaerter is skeptical that long-term antibiotics benefit patients with post-traumatic Lyme disease syndrome.
The Lecrones emptied their bank accounts to pay for the uninsured doctor’s visits and to keep injecting $5,000-a-month Rocephin, an antibiotic, into Nicole’s IV. They lost their house and 401(k). Jennifer’s husband drove a truck for 15 hours a day. Jennifer’s oldest daughter, a high school student and varsity soccer player, gave her mom the paychecks she earned from working part-time at Subway and told her mom to use it to buy groceries and pay bills. The family struggled to function as Nicole languished in bed.
__________________
Dr. Sears…. This patient experience is happening all across America and the IDSA is 100% responsible for the mishandling of this devastating disease misclassifying it as “hard to catch and easily treated.”
What is the motivation for downplaying the severity of Lyme disease Dr. Sears?
For many years, Lyme disease was largely misunderstood and difficult to diagnose, as its symptoms are vague and similar to general feelings of malaise. However, the bacterial disease was conclusively identified in 1975 in Connecticut, United States, and was named after the town it was first diagnosed in. Recently, medical professionals have been able to better identify the disease using a variety of tests, and can diagnose patients more accurately.
What is Lyme disease?
Lyme disease is a parasitic infection caused from ticks carrying the Borrelia burgdorferi bacteria. This bacteria is a type of spirochete, or corkscrew-shaped bacteria, and there are four closely related types in the Borrelia family – Borrelia burgdorferi is the most common throughout the United States; Borrelia mayonii is found in the upper Midwestern United States; and Borrelia afzelii and Borrelia garinii are both found in Europe and Asia. In the United States, the ticks that tend to carry the bacteria the most are the deer ticks, whereas in Europe, the primary carriers are sheep or castor bean ticks. The good news is that not all ticks carry this bacteria; however, with tick populations on the rise and the increase in global travel and exploration, humans are becoming more and more exposed to ticks.
Lyme disease is a parasitic infection caused by tick bites.
What are the symptoms of Lyme disease in acute form?
The difficult part about diagnosing this condition is that its symptoms of Lyme disease are very similar to flu symptoms and can be difficult to pinpoint. Symptoms of Lyme disease also do not present themselves until 7–10 days after a tick bite, making the connection tricky to identify. Acute symptoms of Lyme disease can include a circular ‘bull’s eye’ rash that may appear anywhere from a few days or up to a month following a tick bite. Other symptoms of Lyme disease in this acute stage include headache, fatigue, chills, loss of appetite, fever, and achiness of joints and muscles. When identified at this stage, Lyme disease is treatable with antibiotics; most people only experience these symptoms and never become seriously ill.
What are the symptoms of Lyme disease in chronic form?
It is estimated that 30–50% of people will progress through to the next stage of the illness that can begin two weeks to three months after the infection starts, and they are then subjected to the chronic symptoms of Lyme disease. These can include arthritic pain, memory loss, trouble with vision, and other neurological symptoms that closely parallel multiple sclerosis.
Only a very small percentage of people will progress to the third and final stage of Lyme disease, which can present itself two years after the initial tick bite. This chronic form of Lyme disease causes crippling arthritis and several neurological symptoms similar to those in patients with multiple sclerosis. It can also include facial paralysis, difficulty walking, meningitis, increased memory loss and difficulty concentrating. (Source)
Can Lyme disease cause a loss of appetite?
In a word, yes. One of the symptoms of Lyme disease in its acute form is a loss of appetite, similar to what patients would experience if they had the flu. So exactly how does Lyme disease affect appetite?
Lyme disease can affect the sense of taste, making previously enjoyed foods taste odd. It causes patients to have to limit what they are eating, as only certain tastes and textures are tolerated. At first glance, this aversion to food can come across as an eating disorder, if Lyme disease hasn’t already been diagnosed. In children, it can seem as though they are simply being ‘picky eaters’ or going through a phase of not enjoying certain foods, when in fact it is a sign of Lyme disease.
Lyme disease can affect a patient’s appetite and sense of taste.
How to test for Lyme disease
To determine whether or not flu-like symptoms are a result of Lyme disease, especially if the patient notices the bull’s eye rash or has been recently bitten by a tick, doctors will perform a variety of tests using blood samples. It can be challenging to get confirmation of the presence of the Borrelia burgdorferi bacteria; however, this is not always easy or possible. The part of our immune system that creates the antibodies required to fight an infection is called the humoral immune system. Doctors can check this part of the immune system to determine whether or not the bacteria is present, based on whether the body is creating antibodies to fight it. They can also test at the cellular level to analyse the activity of the antibodies. Humoral immune system tests include the ELISA, CLIA, and immunoblots, while the cellular immune system tests are done through the ELISpot test. (Source)
How to treat loss of appetite due to Lyme disease
The best way to treat any of the acute symptoms of Lyme disease is to get on a regime of antibiotics as soon as possible. If you suspect that you have been bitten by a tick, or you notice the bull’s eye rash, seek medical help immediately to begin testing for the disease. By treating the disease at its root, many people find relief of the acute symptoms, including the loss of appetite. While you are experiencing the loss of appetite due to Lyme disease, try experimenting with various foods to try to find options that are nutritious and appealing to your altered palate. Continue consuming fluids as much as you can, and include fluids such as smoothies that can add nutritional value while not requiring you to eat a lot.
_________________
**Comment**
Before I hit upon lack of appetite, I’d like to clear up a few points:
There’s probably many more strains implicated and an open mind is necessary. Due to the fact testing tests for ONE strain, it becomes clear that besides this extremely limiting factor, the fact the body often doesn’t mount an adequate immune response for antibodies to be picked up on a test is also a problem. Tests routinely miss infected patients. This is a clinical diagnosis.
Please remember that patients can jump around in the 3 “stages of Lyme” and in no particular order. Again, a little girl developed facial palsy, and couldn’t walk or talk within a 4-6 hour window after being bitten by a tick, demonstrating people can quickly jump to stage 3 without ever showing stages 1 & 2: https://madisonarealymesupportgroup.com/2016/12/07/igenex-presentation/
Regarding the issue of appetite, personally I will say that I often felt I ate to take pills. I rarely enjoyed food during treatment due to being extremely sensitive to smell, sight, and sound. Food often takes patients “over the top” and becomes somewhat repulsive. I suppose this could look like anorexia but it’s due to being extremely sensitive – not an abnormal body image. Personally, I can state that both my husband and I eat probably half of what we used to. It just doesn’t sound or taste as good any more. I’ve nearly lost my entire sense of smell – another strange side effect of this illness.
Loss of appetite in Lyme/MSIDS is another topic that deserves more research. It would be interesting to know the potential reasons behind it and if it improves after treatment. I will also state I’ve noticed many patients struggle with abdominal pain at some point in treatment as well as digestion issues. Whether this is due directly to the pathogens or the effect of treatment is another puzzle that needs to be teased out. In my treatment, there was only one antibiotic that made me extremely nauseous. I told my doctor about it and he put me on ondansetron (8mg), a drug commonly used for nausea caused by chemotherapy, radiation, or surgery. It’s expensive but I found if I took one in the morning before any antibiotics, I had no nausea.
If you struggle with digestion issues, I encourage you to read this article written by Dr. Sherr on palsy of the gut with Lyme disease: https://madisonarealymesupportgroup.com/2018/05/21/palsy-of-the-gut-other-gi-manifestation-of-lyme-msids/ Excerpt:Parallelism between Lyme borreliosis-caused paresis of facial muscles supplied by Cranial Nerve VII and Lyme-caused gastrointestinal paralyses suggested a pseudonym to the author–Bell’s palsy of the Gut—despite the fact that these syndromes are related to different types of neural fibers and only occasionally occur together. Since similar injury to all sites may be etiologically related, however, otherwise unexplained gastrointestinal symptoms should be considered as possibly related to Lyme borreliosis and/or its co-infections until proven otherwise…..Borreliosis-caused, gastrointestinal tract paralysis and related abnormalities can occur anywhere along the entire length of the tract (9,10)—involving, for example, functionality of taste buds (11,12), muscular strength of the tongue, gag reflex, ability to swallow, gastroparesis, peristaltic retardation (or excitation) related to small bowel competency, dysbiosis, total arrest of peristalsis (“ileus”), pseudo-obstruction (sometimes associated with Bell’s palsy) (13), colon dysfunctions, encopresis, proctalgia fugax and the final act of defecation. “In 5%–23% of patients with early Lyme borreliosis, there can be gastrointestinal symptoms such as anorexia, nausea, vomiting, severe abdominal pain, hepatitis, hepatomegaly and splenomegaly.
When you become educated on how Lyme can cause paralysis pretty much anywhere in the body, all of a sudden it become quite logical that a patient would struggle with all aspects of eating – from their smell all the way through elimination. And that’s just Lyme – we know coinfections are also sometimes to blame or work synergistically with Lyme: https://madisonarealymesupportgroup.com/2018/05/21/palsy-of-the-gut-other-gi-manifestation-of-lyme-msids/ in the same article by Dr. Sherr she states: Bartonellosis can cause major central nervous system damage, similar in some aspects to the aforementioned Lyme neuroborreliosis. Lyme and bartonellosis symptoms may include encephalitis signified by headaches, major memory loss, rages, seizures, and coma, as well as inflammation of the heart, abdominal pain, bone lesions, and loss of vision. Until recent years, Bartonella, at onset of infection an endothelial and subsequent red blood cells infector, was considered to cause a relatively benign and common disease otherwise known as cat scratch disease (26–28). Now that ticks have become significant transmitters of Bartonella infections into humans, this vectoring appears to amplify victims’ general Lyme symptoms (26), and quite likely amplifies GI tract lining symptoms as well.
I agree with the author of the article that in order to treat the lack of appetite,treating the infection(s) at the root is the best approach; however, also remember that food is life and eat a healthy, whole-food diet with many vitamins and nutrients – especially when your food intake is low. Try to figure out ways to make food appealing again as well as become savvy in ways of choosing healthier, yet appealing options.
for the meeting.
