https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/24957930?

IDSA treatment guideline has been identified as a “predatory device”

AUG 18, 2019 — 

The serious critique below (copy to the Tick-Borne Disease Working Group) requires a response from the IDSA!

Lyme Bumper Stickers (Public Service Announcement)
https://www.ebay.com/itm/123659578861

——— Original Message ———-
From: CARL TUTTLE <runagain@comcast.net>
To: csears@jhmi.edu
Cc: filet@summa-health.org, alexa011@mc.duke.edu, larry.k.pickering@emory.edu,hboucher@tuftsmedicalcenter.org, PracticeGuidelines@idsociety.org
Date: August 17, 2019 at 9:33 AM
Subject: Re: Draft Lyme Disease Guidelines Public Comment

Aug 17, 2029

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,

The 2006 IDSA treatment guideline for Lyme disease has been identified as a “predatory device” as stated in the Lisa Torrey vs IDSA lawsuit:

https://www.dropbox.com/s/18uyrli878ug51m/LymeDisease%20RICO%20Lawsuit.pdf?dl=0

Excerpt:

“169. The 2006 Guidelines do not have a legitimate purpose. The IDSA, the IDSA Panelists, and the Insurance Defendants use the Guidelines as a predatory device to injure doctors who do not follow the Guidelines. The 2006 IDSA Guidelines also prevent doctors from providing patients with proven treatment options because the IDSA Guidelines are extremely restrictive. The IDSA Guidelines also limit patients’ ability to obtain health care and eliminate patients’ choice of medical treatment in the Lyme treatment market.”

________________________________________

As a follow-up to my previous letter dated Aug 6, 2019 I want to make this perfectly clear; repackaging the 2006 predatory device exposes the IDSA to additional litigation for the following reasons:

#1 Failure to acknowledge persistent infection and seronegative disease as identified in the references of my previous letter.

#2 Failure to acknowledge that Post Treatment Lyme Disease Syndrome (PTLDS) after early treatment and untreated Lyme of months, years or decades are two entirely different disease states.

#3 Failure to acknowledge patients who have had a prolonged exposure to the pathogen are almost always incapacitated as exposed in the Under or Skin documentary:

Under Our Skin – Extended Trailer (5 minutes)
https://www.youtube.com/watch?v=sxWgS0XLVqw&feature=channel_page

#4 Promotion that Lyme is hard to catch and easily treated by members of the Infectious Diseases Society of America.

#5 Failure to inform the medical community that the only FDA test available for Lyme disease is useless for the first 4-6 weeks after a tick bite and no better than a coin toss thereafter. As stated by Paul Mead of the CDC:

“… serologic tests cannot distinguish active infection, past infection, or reinfection. Reliable direct-detection methods for active B. burgdorferi infection have been lacking in the past but are needed and appear achievable.” –Paul Mead (as a coauthor of the Schutzer paper)

By the time serology tests are positive, the spirochetes have already invaded various deep tissues, like those in syphilis, and are hard to eradicate with antibiotics

We are dealing with an antibiotic resistant/tolerant superbug [1] that is completely incapacitating if not treated immediately and since humans do not produce antibodies for 4-6 weeks after a tick bite serology is an inappropriate laboratory test but absolutely essential for the purpose of concealing persistent infection. (chronic Lyme)

1. Standard antibiotic treatment for Lyme disease does not kill persistent Borrelia bacteria.

http://droopyyoupi.blogspot.com/2015/08/standart-antibiotic-treatment-for-lyme.html

-What has tuberculosis and Borrelia burgdorferi in common? In the late stage of the disease occurs persistent (tolerant) bacteria, which essentially means that the bacteria lasts and lasts and lasts. They protect themselves against antibiotics and are difficult to treat.

– Both Borrelia burgdorferi and tuberculosis is relatively easy to cure in the early stages, even with the use of one antibiotic. In the late stage it is impossible to cure the disease with the same type of treatment in the acute phase, said Dr. Ying Zhang when he visited the year NorVect conference.

#6 Failure to recognize Lyme disease as a horribly disabling infection; misclassifying the disease as a low-risk and non-urgent health threat.

Example:

Latent Lyme Disease Resulting in Chronic Arthritis and Early Career Termination in a United States Army Officer (Published: 06 March 2019)

CDT Thomas Weiss; CDT Peter Zhu; CDT Hannah White; LTC Matthew Posner; J. Kenneth Wickiser; MAJ Michael A. Washington; LTC Jason Barnhill

https://academic.oup.com/milmed/advance-article/doi/10.1093/milmed/usz026/5370051?searchresult=1

This previously healthy cadet when found unfit for duty received a 100% service connected disability after discharged from active military service. Lyme has been portrayed as a simple nuisance disease by the defendants named in the Texas racketeering lawsuit so obtaining disability for this infection as a civilian is virtually nonexistent.

Dr. Sears… I represent 80,000 individuals who are calling for a congressional investigation into the deliberate mishandling of Lyme disease here in the United States and everyone who signs my petition has an opportunity to leave a comment. 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.

As representative of those 80,000 individuals, please be advised that I am pursuing council to determine legal action against your 2019 predatory device.

Respectfully submitted,

Carl Tuttle

Lyme Endemic Hudson, NH

Previous letter sent to Dr. Sears:

It’s time to recognize that we need an entirely different approach; anything less is inhumane

https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/24913464

Standart antibiotic treatment for Lyme disease does not kill persistent Borrelia bacteria.
blogg.no “koffiehart” Ticks “Dr. Ying Zhang: – Standar antibiotic treatment for Lyme disease does not kill persistent Borrelia bacteria…

http://indepthnh.org/2019/08/08/dhhs-kingston-man-tests-positive-for-rare-viruses-carried-by-ticks-mosquitoes/

DHHS: Kingston Man Tests Positive for Rare Viruses Carried By Ticks, Mosquitoes

Public Domain photo

NH health officials say protect yourself from mosquito bites.
Concord, NH – The New Hampshire Department of Health and Human Services (DHHS) announced that an adult from Kingston, NH tested positive for both Jamestown Canyon virus (JCV) and Powassan virus (POW), the first time these vector-borne diseases have been identified in the State in 2019.JCV is transmitted by infected mosquitoes and POW is transmitted by infected ticks. There are no vaccines to prevent JCV or POW and treatment consists of supportive care.

“From spring until fall, New Hampshire residents and visitors are at risk for a number of different infections from the bite of mosquitoes and ticks, and this case highlights the risk from both,” said Dr. Benjamin Chan, State Epidemiologist.

“In addition to Jamestown Canyon virus and Powassan virus, there are a number of other viral and bacterial infections that can be transmitted by mosquitoes and ticks in New Hampshire, and we recommend that residents and visitors continue to take basic steps to prevent mosquito and tick bites in order to stay healthy.”

Jamestown Canyon virus is a mosquito-borne pathogen that circulates widely in North America primarily between deer and a variety of mosquito species, but it can also infect humans. First reported in the early 1970s, reports in humans are rare but have been increasing over the last several years. This is New Hampshire’s seventh case of JCV since the first report of the disease in 2013. Most reported illnesses caused by JCV have been mild, but moderate-to-severe central nervous system involvement has been reported.

Powassan virus infection is similar to mosquito-borne viruses like JCV, West Nile virus (WNV), and Eastern equine encephalitis (EEE), but is transmitted to people by infected ticks. POW was identified as a cause of human illness in the late 1950’s. In the last decade, 144 cases of POW have been detected in the United States. This is New Hampshire’s fourth case of POW, also since 2013. In New Hampshire, the blacklegged tick is the most likely to transmit this virus to people. A tick needs to be attached to a person for only 15 minutes to transmit POW. Some people who are infected may experience mild illness or no symptoms. Powassan virus can also infect the central nervous system causing brain inflammation, which may be disabling or fatal.

The Kingston resident had no recent history of travel outside our state and spent a great amount of time outdoors. Residents and visitors to New Hampshire should protect themselves and their family members by:

·         using an effective mosquito and tick repellant containing DEET (20-30%), Picaridin, or oil of lemon eucalyptus

·         wearing protective clothing, tucking shirts into pants and pants into socks

·         removing standing water from around your house so mosquitoes do not have a place to breed

·         being mindful of tick habitat keeping grass cut short, and

·         performing frequent and daily tick checks with immediate tick removal.

Vitamin B, ultrasonic devices, incense, and bug zappers have not been shown to be effective in preventing mosquito- or tick-borne diseases.

Other mosquito- and tick-borne illnesses that have been documented in New Hampshire include WNV and EEE from mosquitoes, and Lyme disease, anaplasmosis, babesiosis, and Borrelia miyamotoi from ticks. Biting mosquitoes will continue to be a disease concern until there are two, statewide, hard frosts. Risk of tick bites exists when temperatures are above freezing and ticks are not covered by snow.

People can be infected and not develop any symptoms, or only develop very mild symptoms. Early symptoms can include flu-like illness including fever, muscle aches, headaches, and fatigue. People infected with JCV, EEE, WNV, and Powassan can develop more serious central nervous system disease, including meningitis or encephalitis. If you or someone you know is experiencing flu-like symptoms, including fever and headache, contact your local medical provider.

Anyone with questions about vector-borne illnesses can call the DHHS Division of Public Health Services Bureau of Infectious Disease Control at (603) 271-4496 between 8 AM to 4:30 PM, Monday through Friday. More information can also be found online at www.dhhs.nh.gov and www.cdc.gov.

News story here:  https://www.wmur.com/article/new-hampshire-adult-infected-with-jamestown-canyon-virus-powassan-virus/28647142

________________

**Comment**

Pathogens have a certain proclivity for their vectors. It’s always interesting to me to entertain the possibility that perhaps there is cross over.

For instance, borrelia has been found in mosquitoes and many patients claim to have become infected with Lyme after a mosquito bite:

https://madisonarealymesupportgroup.com/2018/11/07/are-mosquitoes-transmitting-lyme-disease/

https://www.ncbi.nlm.nih.gov/m/pubmed/26631488/  Excerpt:

…results show that DNA of Borrelia afzelii, Borrelia bavariensis and Borrelia garinii could be detected in ten Culicidae species comprising four distinct genera (Aedes, Culiseta, Culex, and Ochlerotatus). Positive samples also include adult specimens raised in the laboratory from wild-caught larvae indicating that transstadial and/or transovarial transmission might occur within a given mosquito population.

BTW: THE LAST STUDY ON THE POTENTIAL OF OTHER BUGS TRANSMITTING LYME (MINUS THE GERMAN STUDY ON MOSQUITOS) WAS DONE OVER 30 YEARS AGO.  AND, WHILE NO SPIROCHETES WERE ISOLATED FROM THE HAMSTERS, ANTIBODIES WERE FOUND – EVEN BACK THEN.

Therein lies the hang up. The presence of antibodies does not prove infection. It’s interesting that the current CDC 2-tiered testing relies upon antibodies…..

The transmission of Bartonella from ticks is also still being quibbled about with some just stating emphatically that it is:  https://madisonarealymesupportgroup.com/2016/01/03/bartonella-treatment/ while others take a more conservative approach and say the science isn’t settled: https://madisonarealymesupportgroup.com/2019/07/13/suspected-insect-and-arthropod-vectors-for-bartonella-species-galaxy/

This issue of what is being transmitted by whom seems to me to be a very important and practical issue.  Why isn’t the science being done?

Also, while the media continues to inform us all of this is “rare,” please remember that many of these pathogens are not mandatorily reported, and we have no idea on prevalence. Coppe Lab out of Wisconsin emphatically states Powassan is NOT rare:

http://www.coppelabs.com/blog/why-is-powassan-virus-infection-still-described-as-rare-and-mysterious/  Please read the following excerpt by Coppe Lab here in Wisconsin,

For the last two years, Coppe Laboratories has dedicated a significant amount of time and resources to dispelling the myth that infection with Powassan virus, a virus transmitted by tick bite, is rare. The Centers for Disease Prevention and Control (CDC) reports only 100 cases of Powassan virus infection in the United States in the last 10 years. Indeed, that statistic gives the illusion that Powassan infection is rare. However, did you know that the only infections reported to CDC are those that are life-threatening, particularly cases causing severe inflammation of the brain like the case reported in LiveScience? Coppe has published three new papers in the last year that clearly show Powassan virus infection is not rare are at all,and until testing for this virus is included as part of tick-borne disease screening panels infections will continue to be underreported. Coppe’s Powassan Guide, which can be downloaded from the website, summarizes the findings from both tick and human Powassan prevalence studies, as well as defining the patient populations that would benefit most from Powassan testing.

To my knowledge, not only are there few current studies on what transmits what, but nothing has been done  on transmission time when multiple pathogens are being transmitted concurrently. Everyone’s stuck on climate change….

 

 

 

 

Live Interview With Marianne Middelveen

  1. Can you tell us what kind of science you practice and describe how that applies to your work?
  2. What is the extent of your involvement with the Charles Holman Foundation?
  3. Is the diagnostic criteria for Morgellons just the fibers under the skin or are there any other symptoms specific to the Morgellons condition?
  4. In 2012 the CDC accomplished a study of Morgellons but could not determine an infectious agent. Why couldn’t they and how can you find these pathogens and what exactly did you find?
  5. Why does the serologic test for Lyme not reveal bacterial infection in those who it is apparent, like in Morgellons patients?
  6. Can you describe the culture method you employed for your research?
  7. How strong is the evidence that Lyme disease is sexually transmissible?
  8. Is it true that Deer do not get Lyme disease?
  9. Is it true that most people who get Lyme don’t get Morgellons, but most Morgellons patients do get Lyme?
  10. Can some people carry Lyme bacteria without health consequence?
  11. What was your research in the South American jungles regarding?
  12. Is Morgellons associated with mold or fungus?
  13. Can you explain what a follicular cast is, what it is made of and how they relate to Morgellons patients?
  14. Can someone have follicular casts but not the Morgellons fibers?
  15. Your latest study demonstrates mixed bacterial biofilms in Morgellons patients, what are biofilms?
  16. You also detected Alzheimer’s plaques in the skin, are there other conditions where Alzheimer’s plaques are discovered in other parts of the body?
  17. In your study you tested 6 of 14 patients for tau and beta-amyloid, why not the other eight?
  18. Is it likely then that the six might develop Alzheimer’s?
  19. Some of your research demonstrates the Morgellons condition in Dogs, and BVV in cattle. Do other animals have Morgellons like birds and cats?
  20. What is the difference between relapsing fever, dental spirochetes, and Lyme and how are all three associated with Morgellons?
  21. What is H-pylori and do all Morgellons patients have it?
  22. Is Morgellons associated with Bartonella?
  23. Your latest study cites research demonstrating beneficial biofilms producing melanin, is this suspected of a possible mechanism by which Morgellons fibers are colored?
  24. What does blind controlled and peer-reviewed mean and how many labs are replicating your work? How does the scientific process work from where you sit?
  25. What is your proudest achievement in regards to your research, Morgellons or otherwise?
  26. What can people watching at home do to help you produce more answers about Morgellons?
  27. Do you have any personal causes or charities that you are passionate about?
The CDC disclaimer states:
“A surveillance case definition is a set of uniform criteria used to define a disease for public health surveillance. Surveillance case definitions enable public health officials to classify and count cases consistently across reporting jurisdictions. Surveillance case definitions are not intended to be used by healthcare providers for making a clinical diagnosis or determining how to meet an individual patient’s health needs.”
https://www.webwire.com/ViewPressRel…. “Parachutes” is a novel written by Marianne Middelveen: https://www.amazon.com/Marianne-Midde…
Please visit our website: https://www.thecehf.org
Please be sure to like and subscribe to the Charles Holman Foundation on YouTube: https://www.youtube.com/c/MorgellonsS…
Follow the CEHF on Twitter: https://twitter.com/thecehf
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Follow the CEHF on Flickr: https://www.flickr.com/photos/thecehf/

https://www.ncbi.nlm.nih.gov/pubmed/31397213/

Seropositivity to Midichloria mitochondrii (order Rickettsiales) as a marker to determine the exposure of humans to tick bite.

Abstract

Ixodes ricinus is the most common tick species parasitizing humans in Europe, and the main vector of Borrelia burgdorferi sensu lato, the causative agent of Lyme disease in the continent. This tick species also harbors the endosymbiont Midichloria mitochondrii, and there is strong evidence that this bacterium is inoculated into the vertebrate host during the blood meal. A high proportion of tick bites remains unnoticed due to rarity of immediate symptoms, implying the risk of occult tick-borne infections in turn a potential risk factor for the onset of chronic-degenerative diseases. Since suitable tools to determine the previous exposure to I. ricinus bites are needed, this work investigated whether seropositivity toward a protein of M. mitochondrii (rFliD) could represent a marker for diagnosis of I. ricinus bite.

We screened 274 sera collected from patients from several European countries, at different risk of tick bite, using an ELISA protocol. Our results show a clear trend indicating that positivity to rFliD is higher where the tick bite can be regarded as certain/almost certain, and lower where there is an uncertainty on the bite, with the highest positivity in Lyme patients (47.30%) and the lowest (2.00%) in negative controls.

According to the obtained results, M. mitochondrii can be regarded as a useful source of antigens, with the potential to be used to assess the exposure to ticks harboring this bacterium. In prospect, additional antigens from M. mitochondrii and tick salivary glands should be investigated and incorporated in a multi-antigen test for tick bite diagnosis.

___________________

**Comment**

This is an interesting study with future potential. Essentially they are saying since Lyme is so hard to detect – find its friends and you may find Lyme.

I’ve written about endosymbionts before, particularly Wolbachia:

https://madisonarealymesupportgroup.com/2017/07/10/wolbachia-the-next-frankenstein/

Briefly, endosymbionts are organisms living in the body or cells of another organism in a symbiotic relationshipwhich isn’t always of mutual benefit. An example of a mutualistic relationship is the protozoan endosymbionts inside a termite which help it to break down the wood it eats.
However, in the case of Wolbachia, while the benefit between itself and the worms it lives in may be mutualistic, it’s caused harm in dogs being treated for heart worm. Heart worm medication causes Wolbachia to be released into the blood and tissues causing severe Inflammation in pulmonary artery endothelium which may form thrombi and interstitial inflammation. Wolbachia also activates pro inflammatory cytokines. For human Lyme/MSIDS patients this could translate out to a similar result when they are treated for worms, which ticks also carry.
What I find interesting here is that both Midichloria and Wolbachia are in the same subclass of Rickettsidae and order Rickettsiales. Guess who else is in these groups?
  • Rickettsia
  • Ehrlichia
Both of which cause a variety of human and animal illness.

The question of course is, could these supposedly harmless endosymbionts be responsible for more than they are given credit for? Testing for them may not only reveal that Lyme is present but in fact that they are contributing to the problem. Sounds like an exciting field of discovery.

http://outbreaknewstoday.com/heartland-virus-detected-in-ticks-from-kankakee-county-illinois-90991/

Heartland virus detected in ticks from Kankakee County, Illinois

August 17, 2019
By NewsDesk  @infectiousdiseasenews

In a follow-up on the report of a Heartland virus case reported in a Kankakee County, Illinois resident last year,  the Illinois Department of Public Health (IDPH) collaborated with the Illinois Natural History Survey Medical Entomology Laboratory (INHS MEL) and Kankakee County Health Department to conduct the first environmental health investigation to a novel tickborne disease case and found Heartland virus was detected in Lone Star ticks collected from Kankakee County.

Amblyomma americanum–The Lone Star Tick/CDC

Bites from Ticks can result in multiple types of infections, which can cause serious illness in some people,” said IDPH Director Dr. Ngozi Ezike. “It is important to take precautions and protect yourself from tick bites by using insect repellent and checking regularly for ticks when in wooded areas or high grass.”

Heartland virus was first identified in 2009 when two Missouri farmers who had been bitten by ticks were admitted to a hospital. Heartland virus is a viral disease that can be spread to people through the bite of an infected Lone Star tick. Reported cases of Heartland virus disease are relatively rare, however almost all individuals with Heartland virus have been hospitalized. Although most people infected have fully recovered, a few have died. There are no vaccines to prevent Heartland virus infections.

Signs and symptoms of infection are similar to those of other tickborne diseases and can include fever, headaches, fatigue, muscle aches, and diarrhea. Most people have reported becoming sick about two weeks after being bit by a tick. And while there is no treatment, doctors can treat some of the symptoms. If you have been bitten by a tick and think you may have Heartland virus or another tickborne illness, visit a health care provider. Other tickborne illnesses Illinois residents have been diagnosed with include Lyme disease, Rocky Mountain Spotted Fever, Ehrlichiosis, and tularemia. Health care providers should consider Heartland virus in patients who have compatible symptoms and are not responding to other treatments.

Ticks are commonly found on the tips of grasses and shrubs. Lone Star ticks are found throughout Illinois. Ticks crawl―they cannot fly or jump. The tick will wait on the grass or shrub for a person or animal to walk by and then quickly climb aboard. Some ticks will attach quickly and others will wander, looking for places like the ear, or other areas where the skin is thinner.

Simple tips to avoid tick bites include:

  • Wear light-colored, protective clothing—long-sleeved shirts, pants, boots or sturdy shoes, and a head covering. Treat clothing with products containing 0.5 percent permethrin.
  • Use Environmental Protection Agency (EPA)-registered insect repellents containing DEET, picaridin, IR3535, or Oil of Lemon Eucalyptus (OLE).
  • Walk in the center of trails so grass, shrubs, and weeds do not brush against you.
  • Check yourself, children, other family members, and pets for ticks every two to three hours.
  • Remove any tick promptly by grasping it with tweezers, as close to the skin as possible and gently, but firmly, pulling it straight out. Wash your hands and the tick bite site with soap and water.

___________________

For more:  https://madisonarealymesupportgroup.com/2016/11/01/heartland-virus-ravages-mans-body/

https://madisonarealymesupportgroup.com/2017/08/02/heartland-virus-in-arkansas/

https://madisonarealymesupportgroup.com/2018/07/01/surveillance-for-heartland-bourbon-viruses-in-eastern-kansas/

https://madisonarealymesupportgroup.com/2019/06/15/therapeutic-efficacy-of-favipiravir-against-bourbon-virus-in-mice/

https://www.lymedisease.org/guidelines-deny-lyme-diagnosis/

15 AUG 2019
By Dorothy Kupcha Leland
Question: why does an organization that is supposedly set up to cure sick people—the Infectious Diseases Society of America—spend so much time and effort to deny access to proper medical care to people unfortunate enough to contract Lyme disease?
For example, the latest version of the IDSA’s Lyme treatment guidelines basically says this: Unless you manifest an erythema migrans rash AND live in one of a handful of states that have been determined to be “endemic” for the tick-borne illness, you are SOL.

Even though Lyme-infected ticks can be found all over the country…

Even though it’s well documented that not everyone with Lyme gets a rash…

Even if you have a known tick bite, a bull’s-eye rash and a lot of other symptoms associated with Lyme disease…

you shall not be diagnosed with Lyme.

Do not pass go, do not collect antibiotics, and do not let the door hit you on the way out.

“Lucky” endemic states?

Yet, even if you are in one of the “lucky” endemic states and thus can get diagnosed, your prospects aren’t much better.

The guidelines allow you only a short course of antibiotics, offer no re-treatment options if you remain symptomatic, and make no allowance for clinical judgement on the part of individual doctors. (Doesn’t the IDSA even trust its own members?)

Why does all this matter so much? Because although the IDSA claims these are just “recommendations,” in fact, its guidelines are often viewed as mandates by physicians, state health officials, medical boards, insurance companies, and the courts. The 2006 IDSA Lyme guidelines have been used to deny treatment, insurance coverage, and medical licenses for years.

They’ve even been adopted by health departments in other countries, making it hard for people with Lyme to get diagnosed in those places, too.
Bottom line: these guidelines will have a devastating impact throughout the world. By making it so difficult for people to get diagnosed in the early acute phase of the disease—when the chance of successful treatment is so much greater—the IDSA condemns huge numbers of people to lifelong health problems.

And, if you think the guidelines offer any help for diagnosing late Lyme disease? Fuggedabout it!

The IDSA has no use for “non-specific” symptoms of Lyme—such as fatigue, pain or cognitive impairment—which are the kind of symptoms folks with late Lyme tend to have. The guidelines simply disregard them.

Public comment

In June, the IDSA published a draft of its proposed guidelines and supporting documents on its website and invited public feedback by August 10. Regrettably, the organization “protected” the content, making it impossible to download, copy or search almost 300 pages of material.

Patients and even journalists noted that it was difficult to study the document and asked the IDSA to make it more accessible to readers. At first, the organization refused. Finally, the day before the advertised deadline, the group relented. The IDSA made the document downloadable and extended the comment period until Sept. 9.

Over the past two months, Lorraine Johnson , CEO of LymeDisease.org, and Dr. Betty Maloney, of the International Lyme and Associated Diseases Society (ILADS), have analyzed the IDSA guidelines and prepared a 58-page rebuttal.

Their comments have been endorsed by more than 30 patient advocacy groups, including the national Lyme Disease Association and the Bay Area Lyme Foundation.

Together, the groups formed the “Ad Hoc Patient and Physician Coalition,” and submitted their objections to the IDSA on August 8. (Before we knew the deadline would be extended.)

Read our rebuttal: Ad Hoc Patient-Physician Coalition Comments

See the list of Lyme patient organizations that have endorsed the comments. Signers to comments

Read, download, and comment on the IDSA Lyme guidelines.

If your Lyme advocacy/support group would like to be listed as an endorser of our comments, please send an email to me, dleland@lymedisease.org, with contact information for your group.

TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s Director of Communications. She is co-author of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at dleland@lymedisease.org.

_________________

For more:  https://madisonarealymesupportgroup.com/2019/08/11/idsa-extends-comment-period-allows-downloads/

https://madisonarealymesupportgroup.com/2019/07/09/idsa-lyme-disease-treatment-management-business-as-usual-leaves-those-with-persisting-symptoms-to-suffer-die/

https://www.galaxydx.com/parasites-and-the-immune-system/

Parasites and the Immune System