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MAT52 · 09-29-2016, 01:41 PM

Quote:

Originally Posted by madisongrrl

When I fell ill with traditional Lyme disease symptoms (flu, fatigue etc ) in 2005 after a deer tick bite, I had 4 negative Elisa tests. My doctors should have treated based on my clinical picture, but did not. I was a mountain bike racer in Lyme endemic Wisconsin, which is why I was even tested. Some people can't even get their doctors to run the test. I was getting ill again in late 2013, which was the start of my neurological and autonomic symptoms, and I had yet another negative Elisa test.

Reasons why tests are negative:

Reasons for False Negative (Seronegative) Test Results in Lyme Disease

Scroll down to the tests section - Reasons for False Negative (Seronegative) Test Results in Lyme Disease

An article by Dr. Cameron why you are supposed to treat based on clinical symptoms:

Relying on a negative Lyme disease test can prove deadly - Daniel Cameron MD

I agree with others who have told you that it is all about getting to the cause - even if only for peace of mind. Mine has been progressing slowly and now affects the whole of me. Because my bloods and spinal fluid have registered positive they haven't been able to call it Fibro although my skin biopsy (badly done by an amateur) came back negative for SFN. Maybe Fibro doesn't exist or maybe it is just another name for chronic pain, secondary to other diseases such as Sjogrens, RA or Lupus.

For people with these diseases it may well be an okay diagnosis because those diseases may well play games with the brain that affect the muscles and the nervous system. But in your case I wouldn't accept a diagnosis of Fibro when my small nerve fibres are being damaged. Keep fighting your corner - there will be answers and in those answers lie your treatment options I feel.