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September 2019 Support Meeting

Our Next Lyme Support Meeting will be:

Date: September 14, 2019

Time: 2:30-4:30pm

Place: East Madison Police Station, 809 S Thompson Dr. Madison, WI 53718

Details forthcoming….

Category:

Meetings, Uncategorized

My Chronic Lyme, Your Ill-Informed Summertime Clickbait

https://medium.com/news-to-table/my-chronic-lyme-your-ill-informed-summertime-clickbait

My Chronic Lyme, Your Ill-Informed Summertime Clickbait

Aug 1

Coverage of Lyme disease often ignores science, vilifies alternative practitioners, and ridicules patients. And it’s making a bad crisis worse.

*Cases of Lyme disease have been on the rise around the country for decades, with most reported in the northeast and upper Midwest. (Map credit: The Cary Institute of Ecosystem Studies)*

By Lauren Rothman

This summer, as people take to the outdoors to hike, camp, fish and swim, news outlets across the country are united in their exhortations to be on the alert for ticks, the tiny arachnids whose bite can confer a host of illnesses, of which Lyme disease is the best-known and most widely feared. A quick Google News search for “ticks” brings up recent results from Self, The Atlantic, TIME and a variety of local news channels, all urging tick checks and sharing information on the many types of tick borne diseases. Tick populations are on the rise, these articles warn us; the illnesses they carry can be deadly, the chorus relates.

Generally, even the most headline-grabbing article on tick-borne diseases will end on an optimistic note, claiming that the majority of these illnesses are readily diagnosed and easily treated with a round of antibiotics. Such conclusions fly in the face of the experience of those who believe they suffer from so-called “chronic” Lyme disease — also called Post-Treatment Lyme Disease Syndrome (PTLDS) — an estimated ten to 20 percent of the population that continues to experience the symptoms of Lyme even after taking the Centers for Disease Control (CDC)-sanctioned treatment of two to three weeks of antibiotics.

For a disease as complex as Lyme, in which symptoms are diffuse, diagnostic testing is unreliable and treatments range from the conventional to the Wild West of alternative medicine, any black-and-white decree on how best identify and cure the disease is likely to remain elusive. But for patients — and I count myself among them, having fallen ill with Lyme after a trip to the Catskills two years ago — the shortcomings of most service journalism articles on Lyme are minor compared to two community-roiling pieces published this summer by the New York Times and New York Magazine. In the first, science writer Apoorva Mandavilli relates the story of her son contracting Lyme disease and quickly vanquishing it with a round of antibiotics; she concludes that Lyme is “an easily treated infection with no long-term consequences for children, or even the vast majority of adults.” In the second, journalist Molly Fischer takes a Gonzo-style dive into chronic Lyme, speaking with patients and attending support groups. Her thesis is that the disease has “grown into a phenomenon often untethered from scientific method or peer review.”

Taken together — and published within weeks of each other — these two misreported, factually inaccurate and seemingly bias-laden articles have heaped fuel upon the evidently inextinguishable fire of the so-called “Lyme Wars,” pitting those who don’t believe that Lyme can become chronic against those who are sure that it does. Within hours of its publishing, Mandavilli’s article — an op-ed entitled “My Son Got Lyme Disease. He’s Totally Fine” — had launched a heated online debate, with sufferers of chronic Lyme dismantling the article’s many errors on Instagram, Twitterand in its comments section, which eventually garnered more than 700 posts. Fischer’s examination of the chronic Lyme “community,” entitled “Maybe It’s Lyme: What Happens When an Illness Becomes An Identity?” paints sufferers as a naive group susceptible to charlatan doctors and snake-oil treatments, and ignited a similar response on Instagram, Twitter and elsewhere.

The lively debate around these two pieces testifies to a growing community that is pushing back against the use of chronic Lyme as clickbait. And make no mistake, this community is real and growing. Peer-reviewed scientific studies increasingly confirm the existence of PTLDS; Brown University statisticians recently predicted that by 2020, the population of sufferers in the U.S. will reach nearly 2 million.

The great Lyme Wars are just beginning.

Jenny Lelwica Buttaccio is a Chicago-based journalist who was diagnosed with Lyme in 2012, and has covered tick borne diseases for outlets including Real Simple, Prevention, and ravishly. She notes that when it comes to one-sided coverage of Lyme, articles like those from the Times and New York are nothing new. While Buttaccio said she has noticed cycles of coverage about the disease — in 2015 and 2016, “nobody wanted to hear about it”; then in 2017 and 2018, coverage ramped up again —there have always been inflammatory pieces that, at best, misrepresent Lyme and its symptoms and, at worst, slander its sufferers.

Specifically, Buttaccio recalled a 2016 VICE News article entitled, “If You Think You Have Chronic Lyme Disease, Most Doctors Say You’re Wrong.” The article characterizes so-called “Lyme-literate” doctors as “quacks” and focuses on the possible negative health outcomes of the long-term antibiotic treatment they often prescribe for chronic Lyme. She remembered that the article began as a dialogue between a group of journalists affected by Lyme and some editors at VICE, a situation that initially seemed hopeful until the actual article, authored by Sydney Lubkin in partnership with the medical news service MedPage Today, appeared.

“Everybody was appalled,” Buttaccio told me.“It was like, you were just talking to journalists about this subject, and now you went in the opposite direction?”

Just as the uproar over the VICE piece died down, yet another “anti-Lyme” piece was published in the Washington Post. Written by staff writer Lena H. Sun, “Dangerous unproven treatments for ‘chronic Lyme disease’ are on the rise” downplayed the severity of PTLDS symptoms and emphasized the wacky nature of unproven alternative treatments such as IV hydrogen peroxide, garlic supplements and stem cell transplants.

“It was a similar thing to the New York Times’ in that it was just a hatchet job on Lyme disease,” Buttaccio said. “It was like every wrong thing, smashed into one piece. They just got blasted for it.”

Given her memory of past articles that misrepresented Lyme disease and the struggles its sufferers face, Buttaccio said she wasn’t surprised when she first read Mandavilli’s Times piece.

“When you see that year after year after year, from different people, it’s always a mixed bag of emotions,” said Buttaccio, who took to Twitter to systematically dismantle each false and scientifically unsupported claim in the recent Times piece. “On one hand, you’re laughing, because it’s absurd. On the other hand, I always feel bad for patients who are harmed by this misinformation, and the people who potentially could be harmed in the future with such a cavalier approach to Lyme.”

As I do, Buttaccio believes that what articles on Lyme lack is nuance. Not every article has to toe the CDC-sanctioned line of “easily diagnosed, easily treated”; nor, at the other end of the spectrum, does every article have to tout the curative powers of stevia sugar substitute. In order to accurately reflect the experiences of those who live with chronic Lyme, the media has to do a better job finding gray-area stories between black and white.

“There should be people who want to check the accuracy of a diagnosis and who want to lean on science — those are good things,” Buttaccio said. “But you have to balance a little bit of that with what thousands of people are saying. There has to be something in your mind that goes, ‘Maybe we don’t have all the information we need. Maybe we do have some gaps to fill. Maybe it’s not as simple as we’re making it.’ And it seems like we never quite get to that place.”

Unless it can find some balance, the media runs two risks. One is undermining public trust, as evidenced by the many Times and New York readers who barraged both publications with Letters to the Editor, or stated that they would cancel their memberships, over their Lyme coverage. The other risk concerns losing much-needed contributions by the varied, and valuable, members of the Lyme community.

Jordan Younger, the influential blogger and Instagrammer known as The Balanced Blonde, has been sharing her struggle with Lyme disease since she was diagnosed last summer. Younger was interviewed extensively for the New York article, and is unflatteringly portrayed by its author Fischer as a wishy-washy Valley Girl hopping from expensive Beverly Hills doctor to expensive Beverly Hills doctor and leveraging her illness to gain more exposure for her brand.

“If you are an editor, assign Lyme pieces to people who have and understand Lyme please. Many of us are writers”: Porochista Khakpour, whose memoir, Sick, explores her experience with chronic Lyme.

“Lyme has also brought the Balanced Blonde to a new audience,” the article reads. “Instagram is home to an active Lyme community, and many of Younger’s photos are now hashtagged #lymewarrior; they receive hundreds of comments and thousands of likes. Target is among Younger’s sponsors, suggesting that perhaps Lyme content isn’t a bad way to reach wellness-minded American women. ‘Jordan younger lyme disease’ is among Google’s top suggested searches for her name, along with ‘jordan younger age’ and ‘jordan younger net worth.’”

Younger, who shared her outrage at what she said was a mischaracterization and manipulation of her conversation with Fischer both on Instagram and in a dedicated blog post, has written that, as a result of the experience, she will never speak to the media about Lyme disease again. Whatever your opinion — or lack thereof — of Younger and her brand, she’s a vocal member of the Lyme community who raises awareness of the disease, and now her voice on the matter has been silenced.

Another member of the chronic Lyme community who expressed her outrage with the New York piece is Porochista Khakpour, the acclaimed author of the 2018 memoir Sick, which chronicles her long battle with the disease. After the article’s publication, Khakpour took to Twitter to denounce it.

“Wish there would be a moratorium on Lyme pieces until they could figure out why people with Lyme disease are so hated and ridiculed,” she wrote on July 25.

Khakpour also expressed the need for a better diversity of voices when it comes to covering Lyme.

“If you are an editor, assign Lyme pieces to people who have and understand Lyme please. Many of us are writers.”

While Jenny Buttaccio, the journalist, expressly stated that she doesn’t believe that only journalists with Lyme have the right to cover it, more thorough communication with the Lyme community is precisely what she argues for as a step towards righting the ship.

“If you haven’t dealt with it personally, and you are a journalist and you want to write on the subject, you should tap into some of the places that the community itself goes to for valuable information,” she advised. “It isn’t always as easy as looking stuff up on Google. Don’t be afraid to look at both sides of the issue. You can do it in a diplomatic way.”

As it stands now, media coverage of chronic Lyme often ignores science, vilifies alternative practitioners, and ridicules patients. As a journalist, and as a sufferer of the disease, I argue that we need to do better. This is about much more than just bruised egos.

“When you dismiss or diminish the challenges that go along with a diagnosis, sure, it hurts people’s feelings,” Buttaccio said. “But more so, it takes us a step back from actually helping people.”

Lauren Rothman is a freelance journalist and a native of Brooklyn. Follow her on Instagram @laurenoliviarothman and @laurenstingslyme.

Category:

Lyme, Uncategorized

Lyme Disease: The CDC’s Greatest Coverup & What They Don’t Want You To Know

https://www.wakingtimes.com/2019/07/09/lyme-disease-the-cdcs-greatest-coverup-what-they-dont-want-you-to-know-evidence-of-sexual-transmission/?

LYME DISEASE: THE CDC’S GREATEST COVERUP & WHAT THEY DON’T WANT YOU TO KNOW

July 9, 2019

Organic Olivia, Guest
Waking Times

Lyme Disease. Do you have it?

If you did, you probably would not know, unless you’re one of the chronic sufferers that had to visit over 30 doctors to get properly diagnosed. Lyme disease tests are highly inaccurate. They’re often inconclusive or false negative. That’s because this clever bacteria has found a way to dumb down the immune system and white blood cells, so it is not detectable until treatment is initiated. To diagnose Lyme properly you must see a “Lyme Literate MD (LLMD)”, however, more and more doctors are turning their backs on patients due to sheer fear of losing their practices! Why? Because insurance companies and the CDC will do whatever it takes to stop Chronic Lyme Disease from being diagnosed, treated, or widely recognized as an increasingly common issue.

Lyme is considered “only” transmittable by a tick infected with bacteria. However, the CDC itself admits it is under-reported, and believes there are between 300,000 to half a million new cases each year. That makes Lyme disease almost twice as common as breast cancer and six times more common than HIV/AIDS.Where are all of these new cases coming from?

When Lyme isn’t detected in the early stages, it becomes Chronic Lyme, a condition which the CDC and IDSA both deny even exists. They will continue to deny it, because if there’s one thing insurance companies hate, it’s chronic disorders they have to spend time and money treating. Therefore, a panel with ties to insurance companies gathered to write up official Lyme guidelines that assure patients are only allowed a few weeks of antibiotic treatment and are not to be diagnosed with Chronic Lyme Disease even if clear symptoms persist and invade the nervous system. Over half of the panelists who wrote the IDSA Lyme guidelines announcing that Chronic Lyme is not real — including the panel chairman — have obvious conflicts of interest including financial interests in drug companies, diagnostic tests, and patents as well as consulting agreements with insurance companies. Researchers and scientists with evidence in support of Chronic Lyme were intentionally excluded from the panel. Because of these unjust Lyme guidelines, insurance companies have the “right” to deny coverage for the treatment of long-term Lyme disease. Doctors have even lost their practices for successfully diagnosing and treating Chronic Lyme, as shown in the film Under Our Skin. In the case of Dr. Joseph Jemsek of North Carolina, he not only lost his license but also his livelihood. Dr. Jemsek can no longer practice simply because he gave antibiotics to Chronic Lyme sufferers, and was then sued by BCBS for 100 million dollars, following which he had to declare bankruptcy. You can read his closing remarks to the NC Medical Board just before they pulled his license here.

Busted – Big Pharma bucks taint the IDSA

Connecticut Attorney General Richard Blumenthal investigated the IDSA panel members for possible violation of antitrust laws and conflicts of interest.

Of the 14 panel authors of the first edition guidelines: 6 of them or their universities held patents on Lyme or its co-infections, 4 received funding from Lyme or co-infection test kit manufacturers, 4 were paid by insurance companies to write Lyme policy guidelines or consult in Lyme legal cases, and 9 received money from Lyme disease vaccine manufacturers. Some of the authors were involved in more than one conflict of interest. (Source: ‘Under Our Skin’(2008), available on Netflix and YouTube)

Study: Strong evidence of sexual transmission

The bacteria that causes Lyme disease is Borrelia burgdorferi, a type of corkscrew-shaped bacteria known as a spirochete. The Lyme spirochete is a cousin to Treponema pallidum, the spirochete that causes Syphilis.

Dr. Alan MacDonald, MD who appears in the documentary ‘Under Our Skin’ (2008) says in the film that he found Borrelia (Lyme) DNA in 7 out of 10 postmortem Alzheimers patients’ brains. This makes perfect sense, since syphilis, its cousin, also invades the brain in tertiary or neurosyphilis. Dr. Klinghardt, MD (also quoted from ‘Under Our Skin’) stated that he’s,

“never had a single patient with Alzheimer’s, ALS, Parkinson’s Disease or Multiple Sclerosis who tested negative for Borrelia.”

http://

Dr. Alan MacDonald, MD talks about Lyme.

Why are so many people suffering from Lyme disease and its associated chronic disorders, such as Alzheimer’s and ALS? A new study suggests that just like its spirochete cousin that causes Syphillis, Lyme disease may be sexually transmitted! The study was presented at the annual Western Regional Meeting of the American Federation for Medical Research, and an abstract of the research was published in the January issue of the Journal of Investigative Medicine.

Medical Daily reports,

“The study — presented at the annual Western Regional Meeting of the American Federation for Medical Research — a collaborative effort by an international team of scientists — tested semen samples and vaginal secretions of three groups of patients to investigate whether passing Lyme disease to a partner through unprotected sex is a possibility. The study observed control subjects without evidence of Lyme disease, random subjects who tested positive for Lyme disease, and married heterosexual couples engaging in unprotected sex who tested positive for the disease. The presence of B. burgdorferi and identical strains of the bacterium were of particular interest to the researchers in unprotected sex in spouses.

The control subjects were found to test negative for the bacterium in semen samples or vaginal secretions, as expected by the researchers.” The researchers found traces of B. burgdorferi in the vaginal secretions of all women with Lyme disease. In contrast, approximately half of the men with the disease tested positive for the bacterium in semen samples. In addition, one of the heterosexual couples with Lyme disease were found to have identical strains of the bacterium in their genital secretions.

One researcher in the study notes, “There is always some risk of getting Lyme disease from a tick bite in the woods. But there may be a bigger risk of getting Lyme disease in the bedroom.”

“Our findings will change the way Lyme disease is viewed by doctors and patients,” said Marianne Middelveen, lead author of the study. “It explains why the disease is more common than one would think if only ticks were involved in transmission.”

But will this actually change the way Lyme disease is viewed? Or will the money funneled in by insurance companies and vaccine manufacturers continue to blind and corrupt the IDSA board members? When is enough, enough?

The study was a joint effort by a team of scientists which included dermatologists, molecular biologists, microbiologists, internists, and family practitioners. The most revealing aspect of the study, in my opinion, is the fact I mentioned earlier: one of the heterosexual couples with Lyme disease showed identical strains of the Lyme spirochete in their genital secretions. “The presence of the Lyme spirochete in genital secretions and identical strains in married couples strongly suggests that sexual transmission of the disease occurs,” said Dr. Mayne.

Gestational transmission from mother to child

From LymeDisease.org:

A North Carolina State University researcher has discovered that Bartonella (a common Lyme co-infection) can be passed to unborn babies, causing chronic infections and possibly birth defects. Dr. Ed Breitschwerdt and his research group tested blood and tissue samples taken over a period of years from a mother, father and son who had suffered chronic illnesses for over a decade. Autopsy samples from their daughter–the son’s twin who died shortly after birth–contained DNA evidence of B. henselae and B. vinsonii subsp. berkhoffi infection, which was also found in the other members of the family. Breitschwerdt’s research appears online in the April 14 Journal of Clinical Microbiology.

You can read a transcript of one of Breitschwerdt’s interviews on Bartonella here.

Multiple strains of Lyme?

In 2002, W.T. Harvey, an MD from Houston began finding large numbers of chronically ill Borrelia burgdorferi PCR- and seropositive patients in the area around his home and practice. Houston, Texas is declared a zoonotically ‘non-endemic’ area, so he set out to understand just how this epidemic was occurring. W.T. Harvey had no competing financial interest (as the CDC and IDSA do) and received no grants when writing his study on Lyme.

“In order to understand this finding prior to sufficient data availability, we chose to examine critically the currently accepted but troublesome ‘Lyme disease’ concepts,” Harvey’s study reads. “Our method was to analyze each foundation ‘Lyme disease’ premise within the context of available medical and veterinary literature, then to reconstruct the disease model consistent with the preponderance of that data. We find the present conceptualization of the illness seriously truncated, with a high likelihood of two distinct but connected forms of human B. burgdorferi infection. The yet-unrecognized form appears to have a broader clinical presentation, wider geographic distribution, and vastly greater prevalence. We conclude that ‘Lyme disease’ currently acknowledges only its zoonosis arm and is a limited conceptualization of a far more pervasive and unrecognized infection state that must be considered a global epidemic.”

Could you have Lyme from your pets?

Suzy Cohen of suzycohen.com is a registered pharmacist and best-selling author. When she graduated from pharmacy school in 1989, she believed that medication was the answer to helping patients get healthy. When that didn’t always work, she began to do some serious research. In one article addressing the truth about Lyme, she writes:

Borrelia spirochetes have been found in the urine of infected dogs, among several other animals. Studies on mice have found that the spirochetes in urine remained viable for 18-24 hours and concluded that “Urine may provide a method for contact non-tick transmission of B. burgdorferi in natural rodent populations particularly during periods of nesting and/or breeding.” Evidence for direct contact transmission has been demonstrated in mice. These findings suggest that further research is needed to evaluate alternate methods of Lyme transmission, such as by the urine of infected animals to humans.

Lyme Facts You Need To Know

1) Only 1 in 2 patients develop the classical bull’s eye rash when infected by a tick.
2) 64% of patients with Lyme Disease do not remember being bitten by a tick.
3) Patients who receive the disease through sexual transmission will have no bull’s eye rash due to the lack of tick bite.
4) Most ticks carry multiple disease-causing pathogens known as co-infections. A tick can host up to 30 different pathogens.
5) Co-infections do not respond to the “standard” treatment of Lyme with antibiotics.
6) Lyme disease can cause over 300 different symptoms.
7) Lyme disease is more epidemic than AIDS, West Nile, and Avian Flu combined.
8) Lyme disease bacterium can survive the suggested 2-4 week antibiotic treatment. The treatment does not guarantee eradication of all Lyme disease pathogens.
9) Lyme evades destruction by antibiotics and subverts the adaptive immune system. Large scale patient surveys show that short term treatment fails for over 90% of patients with Chronic Lyme disease.
10) There are 12 strains of Borrelia that are known to cause Lyme Disease, and standard serology only tests for ONE.

Sources for these facts are listed in order at the bottom of this.

Conclusion and How to Learn More:

“Lyme is one of the many microbes that has entered our system. And I feel as a physician that things are getting to a degree that’s serious. We’re watching other mammals die out and just think, ‘well, I’m glad it’s not me.’ However, as our environment becomes increasingly polluted, so do our bodies. And then we grow bugs [parasites, pathogens] in us that are not compatible with human life anymore.” – Dr. Klinghardt, MD, ‘Under Our Skin’ (2008).

As Dr. Klinghardt said, this is getting serious. Or as Dr. Harvey put it, this is an epidemic. These patients, along with solid science, are being purposefully ignored because IDSA panelists have been bribed and bought.

Could you have Lyme? I suspect I might after a series of flea bites in 2011, and I’m almost positive my mother has had it for a long time. However, this is no shock to me. Like Dr. Klinghardt stated above, Lyme is one of the many microbes that has entered our system. We are all exposed to pathogens and parasites on a daily basis, and are never taught anything about them. I’m on my third parasite cleanse and still passing worms. Children who have recovered from ‘the symptoms of’ autism (which is caused by pathogens and parasites) using Kerri Rivera and Andreas Kalcker’s protocol have passed worms as long as 40 inches. As soon as the worms start to die and come out of hiding, these children finally have relief and hope. What else are we housing that we don’t know about? Why is all of this information ignored?

Lyme presents itself in symptoms often misdiagnosed as Crohn’s Disease, Chronic Fatigue Syndrome, ALS, MS, Alzheimer’s, Colitis, Encephalitis, Fibromyalgia, Fifth’s Disease, Arthritis, Cystitis, IBS, Lupus, Prostatitis, Psychiatric Disorders (bipolar, depression), Sjogren’s Syndrome, sleep disorders, thyroid disease, and more. This is a long list, and the number of people who go misdiagnosed or undiagnosed altogether is staggering. As I said, Lyme and hundreds of other pathogens and parasites have taken up residence in our bodies. We have improved our hygiene but increased our autointoxication (toxifying ourselves via GMO/poisonous processed foods, overeating, fluoride in water, poor health habits, etc.) and environmental intoxication (plastic, pollution, personal care products, and so much more). In my next post I’ll address possible alternative medicine Lyme cures, and I have a parasite cleanse e-book in the works so that we can all begin to get these critters out of our system. While the book is in progress, check out my older post on parasite cleansing.

About the Author

I’m Olivia from organicolivia.com. After facing detrimental health issues all throughout my life, I did some research and found out that our food and medical system is not what we think it is! The last four years I’ve completely healed myself by using food as medicine, liver/parasite cleansing, and utilizing nature’s medicinal herbs. Nowadays I share what I’ve learned with the world through blogging, and I’ve teamed up with my Traditional Chinese Medicine doctor to create my own line of herbal remedies. I hope to give the world the healing and truth that has changed my life.

__________________

**Comment**

There was concern about sexual transmission way before the 2014 pilot study showing spirochetes in genital secretions: https://madisonarealymesupportgroup.com/2019/04/02/transmission-of-lyme-disease-lida-mattman-phd/

https://madisonarealymesupportgroup.com/2019/05/24/microbiology-professor-im-convinced-lyme-disease-is-transmittable-from-person-to-person/

Again, regarding the EM rash, it’s even worse than stated here and can vary from 25-80%: https://madisonarealymesupportgroup.com/2019/02/22/why-mainstream-lyme-msids-research-remains-in-the-dark-ages/, yet this very criteria is used for entrance into research studies & is used by many mainstream doctors as a criteria for having Lyme. Again, if you have it – YOU HAVE LYME. If you don’t have it – YOU COULD STILL HAVE LYME.

The author’s list at the end is crucial and should be shared prolifically. That list is what mainstream medicine is completely ignoring.

Category:

Lyme, Uncategorized

IDSA Extends Comment Period & Allows Downloads

https://www.lymedisease.org/idsa-extends-lyme-deadline/

TOUCHED BY LYME: IDSA extends comment period and allows downloads

By Dorothy Kupcha Leland

Aug. 10, 2019

Hours before its self-imposed deadline of August 10, the Infectious Diseases Society has given a brief reprieve to frustrated patients trying to comment on the IDSA Lyme guidelines.

The new deadline is September 9.

Here’s some background on what transpired:

In June, the IDSA released a draft of its new Lyme treatment comments and supposedly invited the patient community to comment by August 10.

I say “supposedly,” because the organization devised a complicated procedure for reading and commenting that seemed designed to discourage people from even trying.

It was like requiring potential commenters to keep one hand tied behind their back while wearing a blindfold.

As Dr. Judy Stone, writing for Forbes.com, noted recently:

The IDSA has made review more difficult by only offering the draft online. It is “protected,” so one cannot even cut and paste lines into a reply or commentary, nor highlight passages for review. Nor can one search the document by keyword. Forbes and I have asked for a pdf that can be annotated, to make review and comment easier, and they have refused. Their refusal makes me feel they really don’t want people to comment on their 81-page draft and 203 page supplement.

And that’s only to READ the document. Submitting comments also requires an onerous process.

At the last minute, on August 7, volunteer Lyme activist Lucy Barnes expressed her frustrations in an email to the IDSA, the American Academy of Neurology (AAN), and the American College of Rheumatology (ACR). (The three organizations sponsoring the guidelines.)

She called the “daunting task” of reading and commenting “unfair to all interested parties, especially the disabled.”

She also said:

Many patients across the country simply cannot participate in this process and complete the project on time due to the severity of their tick-borne disease related illnesses, their resulting disabilities and/or the effort and energy involved.

It places an undue burden on them, essentially silencing countless voices across the country and even worldwide…. [When copying comments into the IDSA’s required Survey Monkey form] the formatting becomes so jumbled (paragraphs pushed together, no center for titles, spacing problems, etc.) that it would take hours to try to correct it once inserted into the form and even then I am still not sure it will be readable.

My vision is too poor to be able to do this additional work in the tiny space allotted on the form in the small font that automatically appears, and my energy levels are already strained attempting to complete my project on time; therefore, I am not able to use the only option you’ve provided to submit comments.

Lo and behold, on August 9, the IDSA extended the cutoff date for comments–and decided to eliminate the “protections” on the document. An email to Barnes stated:

The deadline to submit comments is now Sept. 9, 2019.

In addition to the deadline extension, the format of the draft guidelines posted on the public comment website has been changed to allow readers to search, download and print the document, ensuring that anyone interested in submitting comments is able to access the draft guidelines and have appropriate time to review and comment.

So, there you go. After weeks of stonewalling anyone who complained about the process, finally the IDSA has agreed to lessen the burden a bit. However, the problematic commenting procedure remains unchanged.

LymeDisease.org and a coalition of partner organizations did submit comments yesterday, a day before the original deadline. Our response totaled some 50 pages—and took the team about three hours to upload via the Survey Monkey form.

We’ll be sharing that document with you, along with related analysis, in the coming days. Stay tuned.

Click here to read Lucy Barnes’ email exchange with the IDSA/AAN/ACR. (Scroll down to the bottom of the page for most recent additions.)

Click here for the IDSA’s portal for Lyme comments.

Previous blog: The IDSA’s insincere request for guidelines feedback

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.

Category:

Activism, Lyme, Uncategorized

NatCapLyme’s Response to Updated Lyme Disease Guidelines States They are Based on Outdated and Discredited Studies

https://natcaplyme.org/psla/in-no-way-does-natcaplyme-endorse-the-adoption-of-the-idsas-updated-lyme-disease-guidelines/?

In no way does NatCapLyme endorse the adoption of the IDSA’s updated Lyme disease guidelines!

NatCapLyme Submitted Its Response to the IDSA Regarding Their Updated Lyme Disease Guidelines During the Public Comment Period

August 7, 2019

The National Capital Lyme Disease Association (NatCapLyme) is submitting this letter as the organization’s official response to the Infectious Diseases Society of America’s (IDSA) public comment period regarding its draft of their updated Lyme disease guidelines.

Before addressing the guidelines, we would like to comment on the format in which the IDSA provided access to the draft guidelines for review. Specifically, while the document was posted online, the IDSA restricted the ability to download or print the document, thereby requiring the reviewer to read the entire publication online. To expect a reader to fully analyze such a comprehensive and complex document ONLY online was an obvious ploy by the IDSA to make the review of this material as difficult as possible. The Lyme community sees through this disingenuous behavior, as did Forbes Magazine,which published an article on the proposed draft guidelines. After the IDSA denied a request from Forbes and the article’s author to receive a PDF version of the draft guidelines, the author wrote, “Their refusal makes me feel they really don’t want people to comment on their 81-page draft and 203 page supplement.”Engaging in such underhanded behavior distracts from their transparency and greatly harms the relationship with the Lyme community and reinforces the belief that the IDSA is not in touch with or cares about the growing number of patients suffering from Lyme and other tick-borne diseases.

Regarding the proposed updated guidelines, there appear to be only minor changes from the IDSA’s previously published and decades old guidelines. The new draft is still based on outdated and, in some cases, discredited studies. Patient groups have clearly demonstrated that thousands who suffer from Lyme and associated tick-borne diseases are losing their battle for health and the pursuit of happiness due to the failure of our national and professional institutions to address this growing epidemic in any meaningful way. To paraphrase the great physician, philosopher and scientist Moses Maimonides: there is no point to science without progress.

Meanwhile, the Centers for Disease Control and Prevention (CDC) and National Institutes of Health (NIH) continue to divert their focus to the highly dubious goal of creating a vaccine before developing a reliable test for Lyme or classifying all the strains of the disease. Without these prerequisite measures, the production of an effective vaccine is significantly compromised. Of course, NatCapLyme would like to see a “safe and effective” vaccine brought to market. However, the current effort narrowly focuses on a few strains of Borrelia in a rush to certify a vaccine. This offers only a limited public-health benefit and harbors a serious potential health risk by suggesting to those vaccinated that they are protected from all strains of Lyme and co-infections.

NatCapLyme is a nationally recognized Lyme advocacy organization that continues to hold face-to-face support group meetings. We also have a telephone hotline to take calls from those seeking help regarding Lyme and tick-borne diseases, and each day we are on the phone for hours providing information, references and support.

While the IDSA continues to stand behind outdated and biased research, we see and hear what is really happening across America.

Standing on the front lines of this growing health epidemic, we are told the same story time and time again. At staggering rates, patients report being misdiagnosed, inadequately treated, or worst of all, dismissed by the medical community as “hypochondriacs.” In reality many of these individuals have real bacterial, viral, or parasitic infections ravaging their bodies resulting from a tick bite. Children, who are most at risk, are losing their childhoods and may spend their entire lives chronically ill, never to appreciate one day of good health or happiness. Once healthy adults are losing their livelihoods, because they are now too sick to continue working. Families are bankrupted by escalating medical costs as they try to find an answer to their multi-systemic symptoms and illness.

A 2015 research study published by the Johns Hopkins Bloomberg School of Public Health found that Lyme disease costs the U.S. health care system between $712 million to $1.3 billion to treat each year.

Again, we are only talking about Lyme disease, not other co-infections. Add to that the indirect costs, such as lost wages and taxes, and the total cost of Lyme disease is in the billions each year.

NatCapLyme sees that the updated Lyme disease guidelines proposed by the IDSA are just status quo and woefully inadequate to address the true extent of the tick-borne disease epidemic reeking havoc across the U.S. With an estimated 427,000 new cases of Lyme disease contracted each year, as published by the CDC, and with little progress in the identification, diagnosis and treatment of tick-borne illnesses, NatCapLyme believes that an increasing number of people will become infected and may subsequently remain sick perhaps indefinitely. In reality, thousands of U.S. citizens are being stricken with a potentially life-long debilitating medical condition that is not, or is barely, recognized by the IDSA. Based on the proposed draft guidelines, we believe that the status quo will be perpetuated for years to come.

Tick-borne illness, especially in the chronic form, will continue to be discounted by the vast majority of physicians, government policy makers and researchers as the IDSA clings to the belief that Lyme disease is hard to catch and easy to treat.

Unfortunately, the Lyme community’s past experience with the IDSA demonstrates the serious challenge of achieving significant change. Little progress is made when a professional medical society that promulgates guidelines to diagnosis and treat tick-borne diseases only recognizes and supports the same old cast of researchers who repeatedly test the same old ideas. In an article published by the Washington Post titled https://www.washingtonpost.com/outlook/why-we-shouldnt-take-peer-review-as-the-gold-standard/2019/08/01/fd90749a-b229-11e9-8949-5f36ff92706e_story.html?noredirect=onWord did not find any entries for your table of contents. It states that,

“peer review can act as a shield to protect the status quo and suppress research viewed as radical or contrary to the established perspectives of referees.” Moreover, “groundbreaking studies by Sir Frank MacFarlane Burnet, Rosalind Yalow, Baruch Blumberg and others were rejected by peer reviewers, yet later led to Nobel Prizes.”

We believe that the key to any progress lies in advancing research in all aspects of the diseases, especially in the development of better diagnostic tools for the detection of all tick-borne diseases. Clearly these guidelines do not do that. We appeal to the IDSA and the research community to expand its focus on emerging and promising research that comes from fresh and new perspectives. It should bring together the best minds and best theories of ALL parties, and require that ALL theories be examined and considered. NatCapLyme believes that true solutions to the dilemma of Lyme and tick-borne infections may be found only when all parties are willing to consider the view that each party holds. Perhaps if we all work together we can forever end this terrible pandemic.

In conclusion, NatCapLyme in no way endorses the adoption of the IDSA’s updated Lyme disease guidelines. The patient community is extremely angry about the lack of scientific and medical progress with respect to Lyme and our masses are growing by the tens-of-thousands each year. This problem is not going away until all parties are invested in creating real solutions that benefit all patients, and society as well. Despite being sick, in pain, exhausted, frustrated and financially drained, we are committed to this cause and will not stop until we regain our health, halt this epidemic, and ensure that these terrible tick-borne diseases do not burden future generations.

https://natcaplyme.org

_______________

For more:

https://madisonarealymesupportgroup.com/2019/06/27/idsa-aan-acr-2109-draft-lyme-guidelines-public-comments-allowed-until-aug-10-2019/

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

https://madisonarealymesupportgroup.com/2019/07/22/idsas-insincere-request-for-guidelines-feedback/

Category:

Activism, Lyme, Uncategorized

Madison Area Lyme Support Group

Archive for the ‘Uncategorized’ Category

September 2019 Support Meeting

My Chronic Lyme, Your Ill-Informed Summertime Clickbait

My Chronic Lyme, Your Ill-Informed Summertime Clickbait

Coverage of Lyme disease often ignores science, vilifies alternative practitioners, and ridicules patients. And it’s making a bad crisis worse.

The great Lyme Wars are just beginning.

Khakpour also expressed the need for a better diversity of voices when it comes to covering Lyme.

Lyme Disease: The CDC’s Greatest Coverup & What They Don’t Want You To Know

LYME DISEASE: THE CDC’S GREATEST COVERUP & WHAT THEY DON’T WANT YOU TO KNOW

IDSA Extends Comment Period & Allows Downloads

TOUCHED BY LYME: IDSA extends comment period and allows downloads

The new deadline is September 9.

It was like requiring potential commenters to keep one hand tied behind their back while wearing a blindfold.

NatCapLyme’s Response to Updated Lyme Disease Guidelines States They are Based on Outdated and Discredited Studies

In no way does NatCapLyme endorse the adoption of the IDSA’s updated Lyme disease guidelines!

While the IDSA continues to stand behind outdated and biased research, we see and hear what is really happening across America.

A 2015 research study published by the Johns Hopkins Bloomberg School of Public Health found that Lyme disease costs the U.S. health care system between $712 million to $1.3 billion to treat each year.

Tick-borne illness, especially in the chronic form, will continue to be discounted by the vast majority of physicians, government policy makers and researchers as the IDSA clings to the belief that Lyme disease is hard to catch and easy to treat.

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