Archive for the ‘Activism’ Category

‘Something’s Wrong, I’m in Pain:’ Lyme Disease Sufferers Worry Doctors Lack Knowledge of Disease

https://leaderpost.com/news/local-news/somethings-wrong-im-in-pain-lyme-disease-sufferers-worry-doctors-lack-knowledge-of-disease

‘Something’s wrong, I’m in pain:’ Lyme disease sufferers worry doctors lack knowledge of disease

“If I could wave a magic wand, I would want the SHA to commit to letting (Lyme sufferers) help train a physician.”

ETHAN WILLIAMS
Updated: May 31, 2019
Erica Fraser took up to 40 pills a day to manage the pain she had as a result of Lyme disease.

She contracted the illness from a tick in Manitoba in 2014. Then a healthy and active 16-year-old, she was bedridden within weeks.

“I horseback rode, I played volleyball then all of a sudden I got sick,” she said. “It was like my life collapsed.”

It took a year for her to be diagnosed. Doctors didn’t know what was wrong.

“At first they were saying it was anxiety and depression,” she said. “Then a possible autoimmune disorder or cancer.”

After initial tests for Lyme came back negative, she sent a blood sample to a California lab. That test came back positive, but wasn’t approved by Health Canada. She was finally diagnosed by a doctor in Vancouver. But upon returning to Saskatchewan, doctors weren’t convinced of the diagnoses.

“My diagnoses they came up with here was (that it was) just a pain syndrome,” she said. “I was put on Oxycodone and told to seek a psychologist. At this point I was using a cane. I was in so much pain even the Oxycodone wasn’t working.”

“I kept saying ‘Somethings wrong, I’m in pain,’ ” Fraser said. “Everyone’s telling you ‘You’re not in pain, it’s all in your head.’ ”

Fraser’s story is not unique. Other Lyme sufferers have complained Saskatchewan doctors don’t have enough knowledge about the disease because it’s not as prevalent here. According to the Saskatchewan Ministry of Health, only one person in the past decade contracted Lyme from a local tick.

Kimberly Epp was diagnosed with the illness in 2005. That was after a more than five-year battle convincing doctors in Saskatchewan she had Lyme.

“I was working in parks and outdoors and just had a knowledge of (Lyme),” she said. “I saw several doctors; they (weren’t) educated on it.”

The 49-year-old Moose Jaw resident was working in Writing-on-Stone Provincial Park in Alberta around 20 years ago when she was bitten. Like Fraser, she received her diagnosis in B.C. and had difficulty getting treatment for Lyme in Saskatchewan. She only received a month’s worth of antibiotics.

“After five days (off antibiotics) my symptoms came back and nobody would treat me,” she said.

“After (Lyme) goes late stage there is no set treatment protocol,” said Fraser.

Triant Steuart, president of the Saskatchewan Lyme Disease, Vector-Borne and Zoonotic Illness Association, said the lack of knowledge about the disease boils down to one thing:

“There hasn’t been enough of a focus on the science,” Stueart said.

He believes there isn’t enough money dedicated to Lyme research.

“We need to get a task force … that puts surveillance on ticks … so that we can say ‘This is what’s in our bugs right now,’ ” he said.

While the Saskatchewan Health Authority (SHA) doesn’t surveil for ticks on the ground, ticks can be mailed to the Roy Romanow Provincial Lab in Regina. The lab then sends them to a national testing centre.

In an emailed statement, the Ministry of Health said Saskatchewan participates in the newly formed Pan-Canadian Research Network on Lyme disease, which has set aside $4 million for Lyme research.

Steuart wants doctors to be mandated to take an educational course on Lyme disease.

“If I could wave a magic wand, I would want the SHA to commit to letting (Lyme sufferers) help train a physician,” he said.

The ministry did not say if it is looking at additional training, but said updated Lyme information has been provided to physicians and have directed them to resources for testing and research.

For now, Fraser and Epp are managing with the disease. Both have used CBD oil, which lowers pain without side effects. Fraser said it’s important to push for support.

“You need to be your own advocate,” she said.

ewilliams@postmedia.com 

twitter.com/EWilliams_LP 

_________________

**Comment**

Doctors ARE uneducated about tick-borne illness.  Period.

What they DO know is straight CDC propaganda that is antiquated and unscientific.

They have CHOSEN to completely disregard what patients are saying, the evidence right in front of their eyes, and the information coming out on a daily basis from another group of doctors in opposition to the CDC’s rhetoric.  This group called ILADS for International Lyme & Associated Disease Syndrome, is completely science-based and frankly, is the only group treating this pandemic appropriately.

Mainstream doctors have CHOSEN to disregard their colleagues, call them quacks, and state that all of the thousands upon thousands of patients with remaining symptoms have MUS (Medically unexplained symptoms) – the equivalent of a psychosomatic state – in other words, they believe patients are simply making it all up.  They would rather hand you an antidepressant – or in the case of this poor woman, Oxycodone, than give you proper antimicrobials for a systemic infection(s). They are lazy and frankly abusive. I’ve heard absolute horror stories from patients.

One warning about needing more research; however, as where this money is channeled is extremely important.  Too much unhelpful research has been done and continues to be done that isn’t helping patients. Since an independent tick researcher has shown that ticks are being spread world-wide by birds and has nothing to do with the climate – that’s a dead end and further research in that area isn’t needed.  Here’s a great example of tax payer dollars paying for shoddy, biased, & erroneous research: https://madisonarealymesupportgroup.com/2019/06/17/ontario-public-health-officials-called-out-on-shoddy-biased-research-utilizing-an-erroneous-climate-change-model-to-program-a-futuristic-tick-problem/

Also, the CDC/IDSA has had a myopic view of this disease – as a singular organism, when many are coinfected have concurrent infection with numerous things.  We know zero about that.  They also have not addressed the ability of borrelia to shapeshift (pleomorphism), as well as the fact borrelia is persistent.  They haven’t addressed transmission properly and looked enough at other bugs being able to transmit as well as sexual, congenital, via breast milk, via tears, urine, etc.  There is plenty to show ALL of these areas have great potential for transmitting and would explain the high numbers affected:  https://madisonarealymesupportgroup.com/2019/05/24/microbiology-professor-im-convinced-lyme-disease-is-transmittable-from-person-to-person/

They ridiculed Dr. Burgess’s work back in the 80’s and 90’s:

 

 

Category:

Activism, Lyme, Uncategorized

Lyme Disease Bill Would Change Coverage Amid Controversy Over ‘Chronic’ Condition

https://www.witf.org/news/2019/06/lyme-disease-bill-would-change-coverage-amid-controversy-over-chronic-condition.php

Lyme disease bill would change coverage amid controversy over ‘chronic’ condition

Written by Brett Sholtis/Transforming Health | Jun 13, 2019 12:10 PM

Deer tick on body.jpgA deer tick nymph crawls on a human body. (Andrew Nuss via Flickr)

With the sun shining and birds chirping on a warm spring day, it’s easy to see why Anson Flake loves living at the edge of the woods in Enola. When he and his family bought the 10-acre property more than 20 years ago, it was the fulfilment of a dream.

“But, as we’ll talk about, you know, there’s a lot of ticks out here,” Flake said.

Flake never expected one of those ticks would lead him to the state Capitol in support of a piece of legislation. However, at some point in the early 2000s, he contracted Lyme disease.

“I don’t know if I got it here on the property– which is very possible,” he said. From paintball games to hikes, he and family and friends spent a lot of time outside.

He never got a bulls-eye rash, and he doesn’t remember coming down with the flu-like symptoms that sometimes accompany Lyme. 

Rather, Flake found out he had it the hard way. He was on a sales call in Texas when he got a pounding headache.

“The guy that I was meeting with said, hey, you’re not looking so good. I said, I’m feeling terrible.”

A doctor in Texas diagnosed him with meningitis, a rare complication of late-stage Lyme.

The doctor’s quick response helped to save his life, and the meningitis was cured. But because he went so long without treatment, he had what doctors called “Late-stage Lyme encephalopathy.”

Some of the symptoms were terrifying, Flake said.

“For me it was dementia-type symptoms. It was forgetting how to go places that I’d been to a hundred times.”

It took years to be cured, but the 53-year-old said he feels great. However, because insurance only covers a few weeks of antibiotics, he said it took more than $50,000 of his own money to get better.

Flake, the cofounder of a company that makes physical therapy devices, said he was able to afford it. However, for most people, that kind of spending would be out of reach.

He said that’s why he’s part of a group pushing for House Bill 629, which would require health insurers to cover whatever the doctor prescribes, including long-term antibiotic treatment.

This is where Flake’s cause runs into some controversial questions about Lyme disease: Do some people continue to be sick after getting treatment? Do some people need more than three or four weeks of antibiotics? Is “chronic Lyme disease” a term people should be using?

That all depends on who you ask.

Flake1-resized.jpgAnson Flake stands in his backyard in Enola, Pennsylvania. (Brett Sholtis/Transforming Health)

At the nonprofit American Lyme Disease Foundation, executive director Philip Baker said “chronic Lyme Disease,” as some people call it, doesn’t exist.

There’s no proof that people who develop “chronic” symptoms have Lyme, rather than some other disorder, and no proof that more antibiotics will help.

“They’ll say, well, I’m convinced I have Lyme disease, the tests are no good, and I’ll keep going from doctor to doctor until I find somebody that will tell me I have Lyme disease,” the retired infectious disease specialist said. “It’s like a cult, in a way.” 

Baker noted, three National Institutes of Health studies did find a severe impairment in health and quality of life among people reporting Lyme symptoms after getting treatments. However, results showed no benefit to prolonged antibiotic therapy.

At advocay group Lymedisease.org, CEO Lorraine Johnson said three studies aren’t enough.

“When you close the books and say the science is settled…you really ought to have a strong body of evidence behind you,” Johnson said. “But that hasn’t been done in Lyme disease.”

Johnson’s group advocates for people who say they have Lyme disease that hasn’t responded to the approved treatment. She wants the National Institutes of Health to do more studies, something she says needs to happen fast, because recent research says undiagnosed Lyme may be 10 times more commonplace than once believed.

House Bill 629 passed the house and currently sits in the Senate Insurance and Banking Committee, where past versions of this bill have all stalled.

This year could be different, Flake said. Other states such as Rhode Island, Virginia and Maryland, have adopted similar bills. And this year the committee has a new chair, Republican state Senator Mario Scavello of Monroe County, who has supported a similar Lyme bill in the senate.

Flake hopes to see the bill pass, something he said will give physicians control over whether to prescribe a longer course of antibiotics.

“Just trust the health care practitioner to do the right thing.”

_________________

**Comment**

Please note a few particulars:

  1. Flake didn’t see a tick, a rash, or have flu-like symptoms yet developed meningitis, a “late stage” manifestation of Lyme. This defies everything The Cabal states about Lyme.
  2. It took YEARS of treatment, yet after this long-term treatment, Flake “feels great.”  What does The Cabal say about that? It certainly doesn’t fit into their “long-term antibiotics don’t help Lyme patients” mantra. I can say the same thing as well as my husband and many, many other patients I know, but we aren’t part of any published literature because we never would have made it into a study to begin with as we didn’t test positive on 2-tiered testing, didn’t have the EM rash, or flu-like symptoms, and many other extremely limiting parameters to enter a research study even if there was one. We are the 30%-40% that go months to years undiagnosed and untreated yet reclaim our lives with long-term antibiotics.
  3. As long as insurance companies can control puppets, they don’t have to pay for this plague.
  4. And to Baker of ALDF,
“Absence of Proof doesn’t mean proof of absence.”

When you really ponder the fact that people like Baker demand double-blind placebo controlled studies as “proof” of an organism that’s incredibly difficult to study, yet deny real-world clinical evidence and calmly allow thousands upon thousands to suffer unimaginable pain and suffering, you begin to truly understand ego, power, and greed.

I would state that this story is a perfect example of how real cases not making published literature improve with long-term antibiotics.

 

Category:

Activism, Lyme, Treatment

Ontario Public Health Officials Called Out on Shoddy, Biased Research Utilizing An Erroneous ‘Climate Change’ Model to Program a Futuristic Tick Problem

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Ontario Public Health Officials Called Out on Shoddy, Biased Research Utilizing An Erroneous ‘Climate Change’ Model To Program a Futuristic Tick Problem

The following comment by independent Canadian tick researcher John Scott on the article by Schillberg, E., et al; “Distribution of Ixodes scapularis in Northwestern Ontario: Results From Active and Passive Surveillance Activities in the Northwestern Health Unit Catchment Area,” is a fantastic example of why we as patients should care about where and how research dollars are being spent.

Research article found here:  https://www.ncbi.nlm.nih.gov/pubmed/30314334.  Comment  here: Scott, 2019, 3 errata, comments on Schillberg et al., 2018

Scott outlines three important corrections (errata) on the research article on various ticks in northwestern Ontario.  Please refer to the Scott link above for the full details, but I highlight the major issues below:

1.  Correction #1 has to do with shoddy research. Scott points out that important details are completely omitted from the study about the proper identification of ticks making one wonder if it’s even true. There are no details on history of travel, collection data, life stage, identification method, and who identified it. There was no molecular analysis (i.e. DNA barcoding) which is important on a foreign tick found in a place it shouldn’t be situated. For example, the Amblyomma cajennense tick has been divided into 6 separate tick species. Then there’s the issue of five years lapsing between tick collection until publication.

2.  Correction #2 has to do with research bias. Researchers always cite previous research that pertains to their work and either correct or build upon it. Schillberg, et al. purposely left out previous published work outlining important history on tick movement, infection rate, ecology, and epidemiology. Then, they go on to state more research is needed when it’s’ already been done, making the reader seriously wonder if they are just looking for further research funding. They underplay the problem by only citing five tick species, when there are nine, eight of which are positive for Lyme disease, and five of which  bite humans. Of particular note and importance to patients, Scott provided key information on the pathological and neurological manifestations of Lyme disease for health care providers. By not citing this work, Schillberg, et al., which are all public officials, are clearly using research bias by flat out ignoring previous work that doesn’t fit their paradigm. It just simply doesn’t fit with what they want people to believe.

3.  Correction #3 has to do with creating an erroneous climate change model to fit their bias. Schillberg, et al., cited references that were hypothetical computer models that had erroneous baseline maps. They completely ignore and dismiss previous published work and instead create their own reality to show a gradual tick expansion northward due to supposed climate change.  The problem is tick populations already existed in those locations. Scott’s most telling statement for patients to be aware of regarding research on climate change and ticks is this theory would,

“explain to the public a reason for not tackling this serious health care issue earlier. The tick problem was programmed for the future. Thus, ill-founded statistical analyses culminated in fabricated erroneous data and, ultimately, resulted in a series of maps that turned out to be flawed science.”

Scott also states the authors’ hypothesis on temperature increase is based on the United Nations International Panel on Climate Change Computer forecasts that have been consistently wrong. And yet, articles & books continue to be pumped out stating that warmer winters mean more ticks, when in fact, Scott has shown that overwinter survival of ticks dropped to 33% when the snow melted in late winter exposing black legged ticks to sudden drops in overnight temperature. This has been substantiated by other researchers as well.  https://madisonarealymesupportgroup.com/2018/11/07/ticks-on-the-move-due-to-migrating-birds-and-photoperiod-not-climate-change/

4.  Lastly, if I had a dollar for every article and book that came across my desk pushing this “warmer winters mean more ticks” mantra due to ‘climate change’, I’d be a millionaire. More research under this false pretense is being done by the minute.

How much does that cost? How many research dollars are being diverted from important issues patients and the doctors treating them really need answers to?

Even well-meaning Lyme advocates/journalists write books on Lyme being a disease driven by climate change.

Meanwhile, in the real world, thousands upon thousands of patients continue to be misdiagnosed with everything from medically unexplained symptoms (MUS), to depression, to MS and fibromyalgia. They are flat-out denied treatment and are told, “It’s all in your head.” The subset of patients (30%-40% of us) that are undiagnosed and untreated for months to years continue to be ignored by research and mainstream medicine. We have no new research on potential modes of transmission, good diagnostics, and effective treatments.

There were 53 troubling points noted throughout this research article.

Schillberg et al., 2018 was created by public officials so desperate to keep their jobs that they will literally fabricate a paradigm and create an alternate reality.

Speak up in your sphere of influence, and insist that your tax dollars go towards research that will help sick people – not line the pockets of dishonest researchers and public officials.

For more: https://madisonarealymesupportgroup.com/2018/08/13/study-shows-lyme-not-propelled-by-climate-change/

https://madisonarealymesupportgroup.com/2018/11/17/uw-madison-phd-in-ecological-climatology-climate-change-computer-models-fudged-except-russian-model/  Dr. Patrick Michaels, director of the Center for the Study of Science at the Cato Institute, provides insight into the debate over climate change and the political games played to create policy.

Political games surrounding Lyme/MSIDS have gone on long enough. Do research on important issues that will help patients.

 

 

 

Category:

Activism, research, Ticks

Ticks? There’s An App For That

TICKS? THERE’S AN APP FOR THAT
Just in time for summer tick season, a free smartphone app is now available to better understand and limit exposure to disease-carrying ticks. The Tick App helps scientists track the threat of tick-borne diseases and also serves as a prevention tool for users, providing a tick risk forecast by location and information on how to prevent tick bites and identify and remove ticks. The app was developed in part by the Midwest Center of Excellence for Vector-Borne Disease, co-directed by Lyric Bartholomay, professor in the UW School of Veterinary Medicine.

Category:

Activism, Ticks, Transmission

Wisconsin Tick-Borne Illness Center of Excellence – Howard Young Foundation

Mike Nickel, the founder of the Wisconsin Yahoo online support group (found on the right hand side of this website under support groups) recently visited the new Tick-Borne Illness Center and had the following to say:

I had a chance to meet with the Howard Young Foundation and got a tour of the new lyme clinic {Tick-Borne Illness Center of Excellence} that will be opening in Minocqua, WI. www.howardyoungfoundation.org 715-439-4005.

It’s located in the Howard Young Medical center which is a 90 bed hospital. The Lyme Clinic will have its own wing, sign outside and entrance. They’re remodeling the offices, lab, waiting area, etc. The wing will encompass about 2,000 sq. ft. There’s a large waiting area which will also offer an educational area where folks can learn about tick-borne illness.

The Waite family {Waite-Kaine Foundation} was instrumental in bringing this to fruition as their daughter Jen passed from lyme complications. There will be an area dedicated to her memory.

Dr. Kogelnik of the Open Medicine Institute will manage the clinic and document treatment efficacy, etc. His goal is to provide documented research verifying treatment modalities and effectiveness for lyme and co-infections. He also desires to offer tick testing as well.

I’ll be honest, I’m very excited about what I’ve seen and heard from the foundation. They understand fully if patients show progress this will prove an enormous asset to the community. They understand that they must have an experienced practitioner spearheading the treatment aspect. They’ve set tentative dates of late July or August for opening. As one can imagine there’s a literal mountain of red tape but they’re very close.

-Mike

I’m waiting to be contacted by the folks involved with this clinic and am hoping they will be willing to make a presentation at support group.  Details coming…..

For more:  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

Category:

Activism, Lyme, Treatment