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B.C. patient questions accuracy of Lyme disease test used by province
Mark Hume
VANCOUVER — The Globe and Mail – Published
Internal government documents show blood tests used to check for Lyme disease aren’t very accurate, says a patient who filed a Freedom of Information request because of her concerns about health care standards.
“One of the experts talked about the Lyme disease test only having an accuracy or sensitivity of about 43 per cent, which is absolutely abysmal,” said Gwen Barlee…
In that article Dr. Perry Kendall, Chief Medical Officer for BC indicates comments made by Gwen Barlee were taken out of context. You decide – read this document acquired in her Freedom of Information request
The Canadian blood test used for Lyme is useless!!! My test also came back negative. I went to the U.S. and was able to get properly diagnosed and am undergoing treatment under the care of a U.S. physician.
I’m one of the very rare people who got a positive Elisa and yet I was still told it can’t be Lyme disease. For everyone 1 positive our BC labs gets, Igenex gets 20 … how do you explain this?
Igenex, a lab with far more experience and accuracy than we will ever be afforded, states very clearly on THEIR lab results that a diagnosis should be made on a clinical basis, not by test results alone and yet BC thinks their lab test are the end all – be all and that’s that?
We need better testing AND for physicians to be brought up to speed TRUTHFULLY on Lyme disease AND it’s coinfections as well as ALLOWING them the room to diagnose AND treat CORRECTLY so that patients can stop draining our resources and return to the productive lives they once had….without prosecution from the college of physicians and surgeons.
My ultimate question for you is this:
If it was you or a loved one who suddenly came down with an unfashionable disease for which there was no accurate tests, never mind the next step of finding someone who is ALLOWED to help you … what would you want to see happen?
Start figuring it out now because it’s already happening except instead of calling it what it really is, your loved ones are being misdiagnosed and forced into lifetime of suffering horribly. Is this acceptable enough for you or your family? Probably not … we’re not happy with it either so fix it.
Do the patient no harm …. we’re counting on you to uphold this or else step out of the way.
I also tested negative here after suffering 37 years with Lyme disease!!! But got positive results in the USA and had to pay out of pocket for treatment through a naturopath!! Things must change!!!!
As a follow up to some comments I’m seeing here and elsewhere, just to clarify–even in the U.S. it takes more than standard testing to overcome the issue, because faulty tests are the recommended tests (two tiered testing starting with Elisa). Some U.S. docs will specify western blot without the elisa or in the case of a negative elisa, but even then in some cases the lab with forego the western blot anyway based on the IDSA’s recommendation, supported by the CDC (and this is not always noticed when the ‘negative’ result is sent to the doctor or patient who may assume the WB was negative unless they request the actual results and read the fine print—speaking from experience). So, even in the U.S. finding a doctor that will use reliable testing (such as Igenex) at your request or as their preference is still important and can be tricky. Most know this, but still thought I’d throw this out there to be safe.
Thank you for clarifying that for others !!! Very important !!! The 2tier testing is faulty both in Canada and the USA.
The western blot through Igenex is what finally gave me my positive results.
As leader of Waterloo Region Lyme Disease, I and two others in my group met with the woman in charge of Lyme disease within the Region of Waterloo Public Health department. We had a conference call with the head of the Ontario lab to discuss the efficy and reliability of our Lyme tests. The lab head admitted that the tests were nowhere near what they should be and that if he had another test he would certainly use it, but he didn’t have a better one.
Unfortunately this was about four years ago and nothing has changed regarding testing.
If we only test for 1/300 strains of borrelia, then it’s really a wonder that patients ever get diagnosed here in Canada. The statistics for how many people having the disease are as unreliable as the testing.
If this were cancer or diabetes, people would be screaming at the neglect of our provinces yet, it is still being ignored. We Lyme patients have been screaming about this for years.
The other point is that it doesn’t even matter if you do get a positive because no doctor can treat you with more than two months of antibiotics anyway. This is the next problem that the public has to face if they get bitten and no government websites that I know of mention that point. It’s all ‘see your doctor’. What an abysmal failure by our health care system.
Lyme lab tests in Canada are unreliable and too many people are suffering, being mistreated, and misdiagnosed. It’s shameful that people have to seek medical care out of country- especially since those of us that have been sick for so long, in my case 29 years, can not afford to. If one lab can get more accurate results, there is no reason others can’t. However, Lyme needs to be diagnosed clinically, and most doctors need to learn about it! Despite growing awareness, too many medical “professionals” believe that a two week course of doxycycline cures Lyme. It does not!! What other disease has the patients know more about it than the doctors?! None!! It is shameful, and criminal. Maybe the time has come to start charging these so-called professionals with aggravated assault, or murder… We’re stuck “doing the time” so I think it’s only fair “they” do too!!
I had a positive clinical diagnosis – but by a tick in a tick infested Lyme positive area – Napa valley was embedded for a week before I got flu symptoms and went looking closer for a tick. Then got EM rash. Was put on doxy for 2 weeks and when symptoms persisted give got a negative Eliza and told I don’t have Lyme. Was positive on Igenix. After years of taking their word for it I read every bit of peer reviewed research and then went to a private doc and was given a ton of antibiotics life is now back to normal with smaller relapses every 2 yrs requiring smaller doses of antibiotics. If your life is not working, get another doc or beg borrow and steal and go to the states.
I had a positive clinical diagnosis – bit by a tick in a tick infested Lyme positive area – Napa valley was embedded for a week before I got flu symptoms and went looking closer for a tick. Then got EM rash. Was put on doxy for 2 weeks and when symptoms persisted give got a negative Eliza and told I don’t have Lyme. Was positive on Igenix. After years of taking their word for it I read every bit of peer reviewed research and then went to a private doc and was given a ton of antibiotics life is now back to normal with smaller relapses every 2 yrs requiring smaller doses of antibiotics. If your life is not working, get another doc or beg borrow and steal and go to the states.
Also and most importantly all bodies CDC and global infectious disease research body place prominence on clinical diagnosis over weak diagnostic tools. If you have clinical diagnosis, combined with likely exposure, you have it. If you have an em and tick bite, you have Lyme.
Who do you contact to have the Lyme test done in the USA?
B.C. Canada… all of Canada, needs to get its head out of the sand for many many medical issues….Canada is becoming an embarrassment in the medical field. Everyone is leaving the country for medical help….Europe, mexico…….people with a medical issue should be automatically granted a medical passport and Canada foot the bill for these people that need help. Then they will grow up and get it together and do what we all pay for….give its people medical help. I think it is time the people all band together and get things in order in this country.