Archive for the ‘Uncategorized’ Category

Woman Bedridden For Two Years By Lyme Disease From Tick Bite

https://www.bbc.com/news/uk-scotland-highlands-islands-49422017

Woman bedridden for two years by Lyme disease from tick bite

22 August 2019
A woman from Glasgow became infected with Lyme disease after being bitten on a camping trip.  Initially misdiagnosed with chronic fatigue and a pain disorder, she eventually lost her job and friends and lived in seclusion in a bedroom in her parents’ home.
See link for entire article.
___________________
**Comment**
How many have to be sidelined by this complex illness before authorities wake up?
We recently lost a young Wisconsin girl to Lyme:  https://madisonarealymesupportgroup.com/2019/08/20/wisconsin-girl-loses-battle-with-lyme-disease/Within the link is another link leading you to obituaries of many patients who lost their lives to Lyme/MSIDS.

Category:

Uncategorized

Early Diagnosis Necessitates Lyme-savvy Doctors

https://www.lymedisease.org/early-diagnosis-lyme/

12 AUG 2019

LYME SCI: Early diagnosis necessitates Lyme-savvy doctors

Educating doctors about Lyme

By Lonnie Marcum

The following are my written comments to the ninth meeting of the Tick-borne Disease Working Group (TBDWG) on June 4, 2019.

Dear Members of the Tick-Borne Disease Working Group:

My name is Lonnie Marcum. I am a physical therapist in California. Seven years ago, I had to quit work to take care of my 14-year-old daughter after she came home from school with flu-like symptoms and never got better.

Nearly a year later, she received a positive test for Ehrlichia chaffeensis. That led us to discovery of other vector-borne infections, including Lyme disease and Bartonella. At the time, I knew nothing about tick-borne infections, so when her doctor gave her a 21-day supply of doxycycline, I thought she’d be better in 21 days.

I was wrong.

Years later, after tediously treating each of her infections and repairing her immune system, she gradually began to get her health back. And today I am happy to say she is about 80% better.

Since my daughter’s illness began, I have found a new purpose—to find a cure for Lyme and co-infections. I am now a science writer for LymeDisease.org, one of the most trusted sources of information for patients with Lyme disease. There I devote my time to reading current research, interviewing scientists and sharing what I’ve learned through my blog LYME SCI.

What I’ve learned is that there are a lot of misconceptions about Lyme disease. First, that it is easy to diagnose, and second that it is easy to treat. Nothing could be further from the truth, in my opinion.

Early diagnosis is key

While it may be true that many patients who receive early diagnosis and early treatment do get better, a huge percentage of patients DO NOT receive an early diagnosis. In fact, fewer than 12% of the 12,000 patients in LymeDisease.org’s patient registry, “MyLymeData,” received a diagnosis within the first month after the tick bite. (Johnson 2019)

Delayed diagnosis is critical to understanding why so many patients are left with debilitating symptoms after standard treatment for Lyme. 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 that a delay in treatment by as little as 9-19 days is predictive of persistent Lyme symptoms. (Bouquet 2016)

Think of these untreated infections like a leaky roof. If you can stop the leak and mop up all the water the first day, the structure will probably be fine. But if you wait a week, a month, a year or more, the damage seeps into the roof, the walls, and the floor, causing mold and rot. If you catch it early enough you may only need to replace the drywall and paint. But if it goes deeper, the structure may need to be replaced.

This is exactly what happens with Lyme patients. Some are lucky to be treated early and recover completely.

Unfortunately, the majority of patients, like my daughter, are initially misdiagnosed with another illness and go months or years before receiving a proper diagnosis. During this time the infection(s) spread to the organs, the brain, the bone marrow, and the heart. (Coughlin 2018, Novak 2019)

Treatment failure is high

Unfortunately, there is no standardized treatment for this patient population. The last NIH-funded treatment trial for patients with persistent Lyme disease was over 10 years ago and it did not reveal a solution. (Fallon 2008, Goswami 2013) The latest 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)

The other issue is that ticks can carry multiple pathogens that can infect people at the same time. (Moutailler 2016) In the MyLymeData survey of patients with chronic symptoms of Lyme disease, over 50% had multiple infections (also known as co-infections).

The most common co-infections are Babesia, Bartonella, Ehrlichia, Mycoplasma, Rocky Mountain spotted fever, Anaplasma and tularemia—all pathogens that can be transmitted by ticks. (Johnson 2014)

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 start taking the appropriate antibiotic, but they may also have an undiagnosed babesia infection which requires an anti-parasitic medication.

As a result, this patient may not get better until all the infections are treated properly. Unfortunately, there are no clinical trials on the most effective method to treat patients with multiple infections.

Need for physician awareness and education

This brings me to my final point—delayed diagnosis of tick-borne diseases. In my opinion, there are two things contributing to the large number of missed diagnoses of Lyme and other tick-borne diseases. 1) lack of physician awareness and education, and 2) lack of accurate diagnostic tools. (Cook 2016)

For example, I know a patient who just last week went to her doctor with a distinctive bull’s-eye shaped rash. Her doctor refused to give antibiotics because her test for Lyme was negative.

Even though the CDC clearly states, “Lyme disease is diagnosed based on: signs and symptoms, and a history of possible exposure to infected blacklegged ticks,” this physician refused to treat this woman during the critical early phase of infection. This is clearly an example of a lack of physician awareness and education.

The second issue here is that the standard test for Lyme is designed to detect antibodies that may take 4-6 weeks for the patient’s immune system to produce. (Borchers 2015) So, while I fault the physician for not knowing about the inaccuracy of the test in the early phase, I also fault the CDC for allowing a faulty test to remain on the market.

To summarize my recommendations:

  1. Improve physician education and awareness of Lyme and tick-borne diseases at all state and local levels. You might do this by requiring doctors to participate in at least one tick-borne disease continuing medical education (CME) course in order to renew their license.
  2. Reduce the number of missed diagnosis and misdiagnoses for Lyme and other tick-borne diseases by developing a precise test capable of detecting all pathogens in a single test.
  3. Improve treatment success rates for patients with late-stage Lyme disease. You may do this by designing clinical trials that use combination antibiotics proven successful in animal models.(Feng 2019)

Thank you for the opportunity to submit comments to the Tick-Borne Disease Working Group (TBDWG). I was an avid viewer of the first eight meetings of the TBDWG and am very happy with the final versions of the sub-committee reports and the Report to Congress. I find them to be some of the most comprehensive accumulations of information regarding tick-borne disease on record.

I look forward to following the second session of the TBDWG and hope that you are able to help implement some of the recommendations as proposed in the first TBDWG Report to Congress.

LYME SCI is written by Lonnie Marcum, a physical therapist and mother of a daughter with Lyme. Follow her on Twitter: @LonnieRhea  Email her at: lmarcum@lymedisease.org .

References

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

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

Borchers A, et al. (2015) Lyme disease: A rigorous review of diagnostic criteria and treatment. J Autoimmun. 2015 Feb;57:82-115. doi: 10.1016/j.jaut.2014.09.004

Cabello FC, Godfrey HP, Bugrysheva JV, Newman SA. (2017) Sleeper cells: the stringent response and persistence in the Borreliella (Borrelia) burgdorferi enzootic cycle. Environ Microbiol19(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

Centers for Disease Control and Prevention. (2013) Press Release: CDC provides estimate of Americans diagnosed with Lyme disease each year. https://www.cdc.gov/media/releases/2013/p0819-lyme-disease.html

Cook MJ, Puri BK (2016) Commercial test kits for detection of Lyme borreliosis: a meta-analysis of test accuracy. Int’l Journal of General Medicine. https://doi.org/10.2147/IJGM.S122313

Coughlin J, et al. (2018) Imaging glial activation in patients with post-treatment Lyme disease symptoms: a pilot study using [11C]DPA-713 PET. Journal of Neuroinflammation. 201815:346 https://doi.org/10.1186/s12974-018-1381-4

Embers ME, Barthold SW, Borda JT, Bowers L, Doyle L, Hodzic E, Jacobs MB, Hasenkampf NR, Martin DS, Narasimhan S, Phillippi-Falkenstein KM, Purcell JE, Ratterree MS, Philipp MT. (2012) Persistence of Borrelia burgdorferi in rhesus macaques following antibiotic treatment of disseminated infection. PLoS One 7(1):e29914, 2012. https://doi.org/10.1371/journal.pone.0029914

Fallon BA,et al. (2008) A randomized, placebo-controlled trial of repeated iv antibiotic therapy for Lyme encephalopathy. Neurology 2008, 70, 992–1003. DOI: https://doi.org/10.1212/01.WNL.0000284604.61160.2d

Feng J, Auwaerter PG, Zhang Y. (2015) Drug combinations against Borrelia burgdorferi persisters in vitro: eradication achieved by using daptomycin, cefoperazone and doxycycline. PLoS One10(3):e0117207, 2015a. doi: 10.1371/journal.pone.0117207

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

Johnson L, et al (2014) Severity of chronic Lyme disease compared to other chronic conditions: a quality of life survey. PeerJ, 2014. 2, e322 DOI: 10.7717/peerj.322.

Johnson, Lorraine (2019): 2019 Chart Book — MyLymeData Registry. (Phase 1 April 27, 2017. Sample 3,903). figshare. Preprint. https://doi.org/10.6084/m9.figshare.7849244

Moutailler S, et al, (2016) Co-infection of Ticks: The Rule Rather Than the Exception.

PLoS Negl Trop Dis. 2016 Mar; 10(3): e0004539. doi: 10.1371/journal.pntd.0004539

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

Rosenberg R, Lindsey NP, et al. (2018) CDC: MMWR. Vital Signs: Trends in Reported Vectorborne Disease Cases — United States and Territories, 2004–2016. https://www.cdc.gov/mmwr/volumes/67/wr/mm6717e1.htm?s

Schwartz A., Hinckley A., Mead P. et al., (2017) Surveillance for Lyme disease, United States, 2008 – 2015. MMWR Surveill Summ. doi: 10.15585/mmwr.ss6622a1

Tick-Borne Disease Working Group 2018 Report to Congress. Available online: https://www.hhs.gov/sites/default/files/tbdwg-report-to-congress-2018.pdf

Tick-Borne Disease Working Group 2018 Sub-Committee Reports. Available online: https://www.hhs.gov/ash/advisory-committees/tickbornedisease/reports/index.html

Category:

Uncategorized

Lyme Disease As War Weapon? Inside New Jersey Representative’s Push For Probe

https://news.yahoo.com/lyme-disease-war-weapon-inside-184904486.html

Lyme disease as war weapon? Inside New Jersey representative’s push for probe

Susanne Cervenk
USA TODAY

ASBURY PARK, N.J. – People suffering from Lyme disease could be closerto knowing whether the chronic illness impacting an estimated 300,000 or more people started off as a U.S. biological weapon.

U.S Rep. Chris Smith of New Jersey hopes that knowledge could lead not only to accountability, but also a potential cure and greater recognition of the disease.

“My hope is, this jump-starts a very aggressive effort to find a cure and see how this (Lyme disease) is growing. It’s pushing out into the Great Lakes area. It’s exploding everywhere,” said Smith, a longtime advocate for Lyme disease research.  His district is one of the hotbeds for the disease.

The House of Representatives added a Smith amendment to a federal defense spending bill that would require the Department of Defense’s Inspector General to investigate whether the military, between 1950 and 1975, experimented with ticks and other insects to be used as biological weapons.

US Congressman Chris Smith (R-NJ) opens a panel discussion about Lyme disease research held at the Wall Township Municipal building Wednesday, May 29, 2019.

US Congressman Chris Smith (R-NJ) opens a panel discussion about Lyme disease research held at the Wall Township Municipal building Wednesday, May 29, 2019.

Investigators will report back to the House and Senate Armed Services committees with the scope of any experiment it finds, including whether any ticks or insects were released into the environment, either by accident or on purpose.

The amendment was approved by voice vote. Now the House bill has to be reconciled with a Senate bill that does not include Smith’s amendment. Smith is working with senators to ensure the investigation survives the process.

Smith’s push for the federal investigation began after reading “Bitten: The Secret History of Lyme Disease and Biological Weapons,” by Stanford University-based science writer Kris Newby.

A longstanding theory is that Lyme disease was a Soviet-era biological weapon created in a U.S. government research center on Plum Island and released, either accidentally or intentionally.

A book about the history of Lyme disease was referenced by US Congressman Chris Smith (R-NJ) before a panel discussion about Lyme disease research held at the Wall Township Municipal building Wednesday, May 29, 2019.
A book about the history of Lyme disease was referenced by US Congressman Chris Smith (R-NJ) before a panel discussion about Lyme disease research held at the Wall Township Municipal building Wednesday, May 29, 2019.

Newby’s book, however, advances the theory with an interview with  late researcher Willy Burgdorfer, who claimed to have infected the ticks during U.S. military experiments.

“There needs to be significant accountability,” Smith said. “This should not be mired in secrecy.”

A federal probe could prove or disprove the theory. If the theory is proven correct, it would also give ammunition to individuals with chronic Lyme disease, who often face significant battles in getting treatment because it is not widely recognized by the medical community.

The Infectious Diseases Society of America has declined to recognize chronic Lyme disease in its clinical practice guidelines, leaving sufferers to find “Lyme-friendly” doctors, which is not easy.

Smith said knowing the truth about any experimentation would also help researchers reverse-engineer a cure for the tick-borne illness, which can often be misdiagnosed first as fibromyalgia or other conditions before patients learn they have Lyme disease.

Smith unsuccessfully attempted to add a second amendment to the bill that would have created a Lyme disease “national strategy,” a holistic approach for federal agencies to combat the disease.

The national strategy is a part of Smith’s TICK Act, federal legislation he has proposed for more than 20 years that would provide $180 million over six years for research.

Follow Susanne Cervenka on Twitter: @scervenka.

This article originally appeared on Asbury Park Press: Lyme disease a bioweapon? New Jersey rep’s call for U.S. probe

Category:

Activism, Lyme, Ticks, Uncategorized

IDSA Treatment Guideline Has Been Identified As A “Predatory Device”

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.
Standard 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…
https://droopyyoupi.blogspot.com

Category:

Activism, Uncategorized

IDSA Guidelines Deny Lyme Diagnosis to Most of the USA

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

15 AUG 2019

comments to IDSA Lyme guidelines

TOUCHED BY LYME: IDSA guidelines deny Lyme diagnosis to most of the USA

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/

Category:

Activism, Lyme, Uncategorized