Lyme disease-- Problem in the Okanagan?

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Auto1
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Re: Lyme disease-- Problem in the Okanagan?

Post by Auto1 »

But the Canadian Test for Lyme really does give false negatives. It is horrible.

I would get re-tested if you feel you still have it.

The vet test I am not sure about...
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Glacier
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Re: Lyme disease-- Problem in the Okanagan?

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TreeGuy wrote:Yeah, I don't think Glacier thought that one through.

I don't think Glacier was being serious either.
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Silverstarqueen
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Re: Lyme disease-- Problem in the Okanagan?

Post by Silverstarqueen »

Isn't it also possible that some of the American tests are giving too many false positives.
Suppose these people are actually suffering from something else,and end up getting expensive treatment for lyme, but don't get treatment for their actual problem?
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TreeGuy
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Re: Lyme disease-- Problem in the Okanagan?

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Silverstarqueen wrote:Isn't it also possible that some of the American tests are giving too many false positives.
Suppose these people are actually suffering from something else,and end up getting expensive treatment for lyme, but don't get treatment for their actual problem?


Yes it is quite the pickle. I have been told that even the American test can come back false negative and then once treatment starts it can come back positive as the treatment brings the bacterium out of hiding so to speak.

The disease can mimic around 300 different illnesses. I was diagnosed with diverticulitis a year and a half ago, now researching lyme it turns out that may have been a misdiagnosis. Which makes sense as my age, health and diet doesn't really line up with someone who would have diverticulitis. Diverticulitis patients are usually elderly people or middle aged people with really poor North American diets.

You have to consider the symptoms of Lyme and the probability of the person with those symptoms being exposed to tick habitat. I work in landscapes, around trees, grassy and bushy areas. I also spend my off time in those areas making me highly susceptible. Add the symptoms I have experienced over the last few years and the extreme symptoms I am facing now and I am willing to take that chance and get treatment, even if it is out of pocket.

I have a great MD but since Canadian testing gave me a negative result, that is where it starts and stops with the Canadian medical system and Lyme. Unless I want to wait longer until my symptoms are more severe, then I am sure they might re-test or diagnose me with something that isn't so controversial.
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Re: Lyme disease-- Problem in the Okanagan?

Post by Silverstarqueen »

Treeguys would also be exposed to pesticides, wouldn't they? My husband ended up with a boatload of problems and I think it was pesticides, but it could have been ticks.
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TreeGuy
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Re: Lyme disease-- Problem in the Okanagan?

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Silverstarqueen wrote:Treeguys would also be exposed to pesticides, wouldn't they? My husband ended up with a boatload of problems and I think it was pesticides, but it could have been ticks.


Yes I have had exposure to pesticides in my career and maybe that is a possibility. But the symptoms of Lyme seem to line up all too well. 20 years ago I pulled a tick off of my leg, turns out the bacteria can stay dormant for that many years.
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TreeGuy
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Re: Lyme disease-- Problem in the Okanagan?

Post by TreeGuy »

The Lyme conspiracy continues...

Internal government documents raise concerns over
accuracy of B.C. Lyme disease tests

canlyme.com /2015/07/20/internal-government-documents-raise-concerns-over-accuracy-of-b-c-lymedisease-
tests/
Canlyme
July 20, 2015
Lyme disease patients denied treatment based on faulty tests
Vancouver, BC ~ Confidential documents, obtained through a Freedom of Information (FOI) request, show
doctors and other senior government officials in British Columbia raising serious doubts about accuracy of
Lyme disease blood tests.
“Firstly, are we talking about Lyme testing? If so, patients have access to the standard
testing available in BC; there continue to be limitations because the tests (Elisa) for Lyme
disease are insufficient; newer tests are not available in BC.” Email from senior vice-president
Patient Care Services at BC Women’s Hospital and Health Centre.
“It is very difficult to diagnose patients with Lyme disease, particularly when patients test
negative for Lyme disease using the available tests for Lyme diseases which currently have
a sensitivity rate of less than 50%.” Draft Key Messages document from senior staff with BC
Government Communications and Public Engagement (GCPE).
“ . . . but the issue with Lyme spirochete is that they are not found in the blood like other
bacterial or viral agents. Borrelia burgdorferi is very transient in blood and they like to settle
in tissues more.” Muhammad Morshed, clinical microbiologist at the BC Centre for Disease
Control discussing the limitations of blood tests in diagnosing Lyme disease.
“It is really concerning that the public and patients are falsely reassured that Lyme disease testing in BC is
just fine, but behind the scenes the BC government acknowledges there are serious limitations with the
accuracy of the tests,” said Gwen Barlee, Lyme disease patient and advocate. “It is tragic that Lyme
disease patients in BC are often denied treatment based on negative tests when it is known the tests are
inaccurate.”
Lyme disease has been a contentious issue in BC. In 2011 an internal government report obtained through
FOI criticized the province for poor management of the disease. Within 24 hours of the report being made
public the government announced the creation of a clinic to treat Lyme disease patients. Since its opening
the clinic has been beset by controversy with multiple doctors leaving citing interference with the treatment
of Lyme disease patients.
“The limited sensitivity of current tests mean they don’t detect Lyme disease reliably,” said CanLyme board
member David Cubberley. “Government needs to inform our doctors that Lyme disease is diagnosed from
symptoms and not to depend on this poorly performing test.”
The BC government originally charged $2,160 for the release of the records saying they “did not contribute
positively” to the public interest. In response Lyme disease patients launched a crowd-funding campaign to
raise the money for the FOI – reaching their target within four hours. After a complaint to the Office of the
Information and Privacy Commissioner the government waived the entire fee and offered an apology.
For more information please contact:
Gwen Barlee, Lyme disease advocate, 604-202-0322
David Cubberley, board member Canadian Lyme Disease Foundation, 250-818-1129
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TreeGuy
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Re: Lyme disease-- Problem in the Okanagan?

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Just an update to this thread, not that it has gained much interest, however if it helps someone else then it is worth it. Through testing done in the USA I have been diagnosed with Lyme disease. I will be starting oral antibiotics next week, which could last weeks to months. Apparently after 4-5 months of treatment I might feel 20% better. I am told that as the antibiotics kill off the bacteria, toxins will be released into my system that will make me feel much worse throughout the treatment. I am also being prescribed a regime of supplements to counteract the damage that the antibiotics will do.

If anyone thinks they, or someone they know might have lyme disease feel free to contact me.
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Re: Lyme disease-- Problem in the Okanagan?

Post by Silverstarqueen »

I have heard people say this antibiotic treatment is very expensive. Do you have an estimate on the cost per month or year?
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TreeGuy
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Re: Lyme disease-- Problem in the Okanagan?

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I am not sure of the cost yet. When you have been sick for so long and a treatment is offered cost isn't really your first concern. I am fortunate enough that my wife has an excellent group health plan that covers 80%. The cost of the supplements will be out of pocket and that might get expensive.
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Re: Lyme disease-- Problem in the Okanagan?

Post by Silverstarqueen »

how does someone know that the u.s.lab isn't giving a false positive ressult (if some are false 50% of th time?
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TreeGuy
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Re: Lyme disease-- Problem in the Okanagan?

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Silverstarqueen wrote:how does someone know that the u.s.lab isn't giving a false positive ressult (if some are false 50% of th time?


How accurate is any type of testing? The testing done here in BC is a screening test, it either comes back positive or negative. The testing done in the US measures the levels of 25 different antibodies and the results show their different levels. The levels range from Negative (-), Indeterminate (IND) or Positive (1+ to 4+). So you can see that the results from the US testing paint a better picture.

Diagnosis is not determined on the test results alone, the symptoms of Lyme (which are many) must also be considered. If testing and diagnosing for Lyme was simple there would not be such controversy around it.
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Re: Lyme disease-- Problem in the Okanagan?

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Wondering how you're doing treeguy.

I spend a lot of time outdoors and get asked if I'm worried about bears and snakes, I've updated my response in the last few years to, "not as much as I am about ticks."

We know two people personally that have struggled with the desease. Like yourself neither were able to get it diagnosed in Canada and finally paid out if pocket in US. Which they'd gladly have done sooner if they were aware of how little the Canadian medical system cared about the welfare of Lyme disease sufferers. In both their cases the delay in treatment has caused very serious and permanent health problems. Our one friend can no longer even swallow on his own and we fear for his life it's gotten so bad. For me its hard to understand how a test was all that was required for them to lead a normal life. It's criminal how this disease is treated with such negligence in Canada.
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Re: Lyme disease-- Problem in the Okanagan?

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Poindexter wrote:Wondering how you're doing treeguy.

I spend a lot of time outdoors and get asked if I'm worried about bears and snakes, I've updated my response in the last few years to, "not as much as I am about ticks."

We know two people personally that have struggled with the desease. Like yourself neither were able to get it diagnosed in Canada and finally paid out if pocket in US. Which they'd gladly have done sooner if they were aware of how little the Canadian medical system cared about the welfare of Lyme disease sufferers. In both their cases the delay in treatment has caused very serious and permanent health problems. Our one friend can no longer even swallow on his own and we fear for his life it's gotten so bad. For me its hard to understand how a test was all that was required for them to lead a normal life. It's criminal how this disease is treated with such negligence in Canada.


It really is. My husband's aunt is steadily getting worse and providing her, and her daily caregivers, what they need is a huge challenge and one that is currently failing.
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Re: Lyme disease-- Problem in the Okanagan?

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One if the first things Amy was tested for was Lyme disease and the negative result delayed her treatment. Inexcusable that the test that's responsible for this disastrous misdiagnosis is still all that's available in Canada. Compound that with no recognition of the illness and the impact on sufferers and thier family is enormous. It's a living nightmare that possibly could have been avoided if more was being done at the onset of the symptoms.
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