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Re: Lyme Disease - The Right (and Wrong) Tests
 

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alisaun Views: 5,814
Published: 14 years ago
Status:       R [Message recommended by a moderator!]
 
This is a reply to # 858,204

Re: Lyme Disease - The Right (and Wrong) Tests


Hi finnalyfaith,

You are absolutley right! This is one of the reasons it is *so* hard to get properly diagnosed with Lyme. The doctor runs a test and says "Oh look, completely negative".

Here's why:

The basic tests that most doctors run first is called an ELISA. This test is grossly, madeningly inaccurate. I believe its accuracy for showing positive is about 40 percent. That means it is 60 percent inaccurate. NOT great odds there.  And the longer you have had Lyme, the less likely that you will test positive in any way on this test.

But it gets even worse. They may give the *next* level of test, called a Western Blot. This test is more detailed. HOWEVER, what people in the Lyme community have found, is that inexplicably, just about every lab in the country seems to mishandle the blood or do something to also cause these tests to be predominantly false negative!!

I am a perfect example. I had a rheumatologist run a Western Blot through a lab that shall remain nameless. It came back *completely* and utterly negative. Not a hint of Lyme.  If I would have accepted that test result as truth, I would have never gotten properly diagnosed or treated.  But I always thought you could trust lab tests, so for months I didn't know any better to question the results.  Why would I?

Then, after months of research, I discovered what I mentioned above.  I had the *same* test, the Western Blot, done through a lab called Igenex. My test lit up like a ^&$*@#$% Christmas tree. I was so positive, that I even met the CDC's rigid criteria for reporting purposes, which is very hard to do.

So...as crazy as it sounds, the only reliable test that I know of is the Western Blot, done ONLY through Igenex. This is the only way you can get an accurate test done to see if you are in fact positive.  You will have to pay out of pocket but many insurance companies will reimburse you.  The trick is trying to convince a doctor to do this.  You will often have to fight tooth and nail to have this done.

I do not know why this is so. It makes no sense to me, but it is true as hundreds of people with Lyme I know can attest.

One caveat: You mentioned Bowen labs. They are also a reliable lab but the test they used to do was only for research purposes. It was called the Q-RiBb, but they don't do it anymore. However, they have developed a new test which looks fantastic, so that would be another option too.

Cheers,

Alison
 

 
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