Hi, you need to find a doctor willing to sign off on the paperwork which you can get yourself straight from IgeneX. That usually means an LLMD. Or the LLMD will do the tests through IgeneX themselves.
You should contact ILADS.org to find one but the doctor doesn't have to be a member of ILADS to be an LLMD. Mine isn't. Sometime an integrated medicine doctor will do it or an alternative medicine doctor so you could also google Lyme literate Dr in your area and see what you come up with. Some LLMD can be quacks so you need to be careful. If they suggest something that sounds strange come back and ask us.
Sometimes an LLMD will treat your illness based on your symptoms, before getting your tests back from Igenex. You can get one or several co-infections along with Lyme. I had 2. My LLMD started treating my Babesia even though my first test came back negative from IgeneX. Its great that she did because my symptoms were so bad. Several months later, my test came back positive.
When you go to ILADS , read Burascano's treatment guideline for the signs and symptoms of Lyme and the various co-infections.
Lets us know if you have any other questions. Good luck.
Did your doc give you copies of all the test results done already? I think you are entitled by law have them in hard copy. Sometimes a nonLyme doc will not interpret a test the way a Lyme doc will, and that can make all the difference, so having copies to show a Lyme doc can really help.
LLMDs and nonLLMDs will often start with the same tests: Western blot and ELISA. The W.blot test looks in your blood for antibodies your immune system would make to Lyme, and those antibodies are called IgM (which are made by your immune system early after the initial infection) and IgG (which are made later in the infection, and as the IgM antibodies are trailing off).
Unfortunately, the W. Blot test is not always very accurate for several reasons, including that one trick of the Lyme bacteria is to suppress your immune system, so the results may not scream 'Lyme!' even if you have it. Sounds like you probably had the Western blot test already. But now what?
An LLMD often uses the Western blot IgM and IgG tests, but also uses a different type of test, called PCR, which does not rely on your immune system response as the W. Blot does, but instead looks in your blood for direct evidence of DNA from the Lyme bacteria themselves. NonLLMDs often do not use the PCR test, thinking that the IgM and IgG tests are good enough.
In your situation, I would indeed find an LLMD, and take copies of the test results already done with you. Every bit of data is helpful to fill in the diagnostic picture. An LLMD is also more likely to be sensitive to the possibility of co-infections, meaning one or more diseases other than Lyme which the Lyme ticks also carry about half the time.
Don't be alarmed by all this -- it's just the paces the doc needs to go through to cover all the bases. If the doc doesn't know what you have, the treatment will not be effective, so a full and accurate diagnosis is the first step to getting well.
Best wishes to you -- we've all been where you are, so we understand. Take care and keep us posted, okay?
My LLMD is in Rockville (he is one of the 3 ILADS recommendations for MD), but there is one in DC who is very reputable and less expensive. If mojogal's, and the ILADS suggestions don't pan out I can message you names as well. Good luck!
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