Archive for the ‘Uncategorized’ Category

IDSA Guidelines Deny Lyme Diagnosis to Most of the USA

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.

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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/

August WLN Newsletter

At_a_Glance-August_2019 Go here for Newsletter

Highlights:

  • WLN needs volunteers. See link for details
  • Polly Murray, the woman who reported the unusual illness in her community which later was determined to be Lyme disease, passed away on July 16, 2019.
  • The new Lyme clinic in Northern WI is raising money and hopes to open soon
  • Bay Area Lyme Foundation has restarted their nationwide tick testing program.
  • Bipartisan Lyme bills are being considered in Wisconsin.
  • A reminder to consider participating in MyLymeData
  • A New source of financial aid for Lyme patients
  • Help spread education in WI by purchasing pretreated socks from WLN

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For more:  

Tick-born Illness Center of Excellence:  https://madisonarealymesupportgroup.com/2019/01/11/wisconsin-tick-borne-illness-center-of-excellence/

https://madisonarealymesupportgroup.com/2018/12/16/tick-borne-illness-center-of-excellence-set-to-see-patients-in-early-2019/

https://www.howardyoungfoundation.org/Howard-Young-Foundation-In-the-News/tick-center.html

https://madisonarealymesupportgroup.com/2019/07/02/wisconsin-public-radio-on-tick-borne-illness-center-of-excellence/ Interview with Andy Kogelnik, the doctor in charge of the new center.

Wisconsin Lyme bills:  https://madisonarealymesupportgroup.com/2019/05/29/lawmakers-create-bills-to-bite-back-against-lyme-disease-wisconsin/

https://madisonarealymesupportgroup.com/2019/08/16/public-hearing-video-on-wi-lyme-bills-315-316/

https://madisonarealymesupportgroup.com/2019/06/30/lawmakers-want-to-combat-lyme-disease-with-more-signs-insect-repellent-in-public-parks/

 

 

 

FREE Health Talks – Dr. Waters

http://www.watersbiomed.com/latest-news.html

Latest News

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Public Lectures

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2019 Schedule

​Listen to Dr. Waters speak about the one thing all of us want to avoid—AGING! Weight gain, hormones, toxins, memory loss…we can help!

Saturday, September 28, 2019   ~  10:00am
at the Quality Inn – Mineral Point

1345 Business Park Rd—Mineral Point WI 53565—608-987-4747Saturday, October 5, 2019   ~  10:00am
at the AmericInn by Wyndam – Waupun

204 Shaler Drive—Waupun WI 53963—920-345-1140

Saturday, October 26, 2019   ~  10:00am
at the Stoney Creek Hotel & Conference Center – LaCrosse

Badger’s Den Room
​3060 S Kinney Coulee Rd—Onalaska WI 54650—608-781-6060


Saturday, November 2, 2019   ~  10:00am
at the Basics Co-op Community Room – Janesville

1711 Lodge Drive—Janesville WI 53545—608-754-3925

These events are free and seating is first come, first served! 
Question & answer following!
Friends and family are welcome!
 

Diabetic Epidemic
Is this why I’m overweight and tired?

Download File


 fatigue, cravings, aches and pains, brain fog, weight gain, hormone imbalances, depression…
Do you have these symptoms or want to avoid them?
You may be pre-diabetic or diabetic.  Learn how to find out if you are, why you are
​and what to do about it!

Farm Chemicals
View slides from Dr. Waters 2016 lecture on the controversial usage of pesticides in farming by clicking on the .pdf link

prediabetes_lecture_2017_final.pdf

Download File


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farm_chemicals_-_waters_center_2016.pdf

September 2019 Support Meeting

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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….

 

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.

 

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

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

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?

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Dr. Alan MacDonald, MD talks about Lyme.

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