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.”

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 

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**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: