Just a question about how far to go seeking treatment that tests say you don't have.
For those that had negative test result but keeped searching for a doctor, did any of you feel like just giving up?
I have this gut feeling that this is the answer, as I have had so many neuro consults, MRI's etc. and everything is normal. But I feel far from normal.
I'm afraid that I maybe getting to wrap up in wanting an answer that tunnel vision in regards to having lyme because it fits so good. Did anyone else experience any of these feelings?
There is NO test which can absolutely rule out Lyme. The most frequently performed test, the ELISA, misses over 60% of cases. The more accurate test, the Western Blot, is still not completely reliable and is generally only given if you have a positive ELISA. Which makes no sense at all but there you have it. So in other words a negative test does NOT always mean that you don't have Lyme. For this reason, the CDC states that Lyme is supposed to be a clinical diagnosis with the test used to help confirm.
In the largest Lyme disease trial ever conducted (for the Lyme disease vaccine trial for Lymerix) which included 10,000 participants, it was found that 36% of the volunteers with proven Lyme disease (culture or DNA positive) never developed a positive Western Blot.
Some reasons why a test can come back negative in a Lyme infected patient:
1. The sample was taken too soon after infection for your immune system to have mounted a defense.
2. You are producing a detectable level of antibodies, but the lab made an error.
3. You are producing antibodies to a strain of Borrelia burgdorfiri (Lyme) that the lab cannot detect (for the record, there are over 200 strains in the US alone)
4. You are producing antibodies, but they are bound to they Lyme bacteria (called a complexed antibody) without enough free-floating antibodies in the bloodsteam to be detectable.
5. Your immune system is compromised and not responding properly.
6. By taking antibiotics early in the disease, the immune response may have been aborted.
7. The bacterium has changed its makeup and the immune system hasn't noticed it.
8. The bacterium is cloaking itself inside an immune system cell thereby escaping detection.
9. You have a genetic predisposition to produce a negative test, as shown by Drs. Wang and Hilton in their 2001 publication.
It can be a real challenge (and that's putting it politely) to get a correct diagnosis. Lyme can cause so many symptoms that it is now known as the Great Imitator (used to be Syphilis that had this designation) because it can mimic so many other conditions. Many, many patients have had to go to one specialist after another in search of a correct diagnosis and effective treatment.
If you suspect you have Lyme, it is important to be evaluated by a Lyme literate physician. Be aware that just because someone is an infectious disease specialist or calls themselves a "Lyme expert/specialist" does NOT mean that they are Lyme literate. The best way to find a competent doctor is through other patients who have had good experiences and received effective treatment.
Thanks for the reply.
My problem is that I live in Singapore where lyme is not common so for me to see a LLMD would mean quite a trip back home to Canada. So I'm not quite sure how far I want to go with this. After having so many doctors telling me they have no idea what is wrong the though of getting on a plane, leaving my children behind to be told yet again there is nothing wrong with you is a little scary.