Hi Everyone-
I need some advice on how to proceed with finding a Lyme doctor. about seven years ago, my husband and I developed identical symptoms within six months of one another. After a lot of running around to various doctors (you know the drill) someone suggested we might have Lyme Disease. My Western Blot was a strong positive (IgG met both Igenex and CDC criteria), but my husband's Western Blot was negative for both Igenex and CDC standards. However, we both have had consistently low CD57 tests (below 50) and both have tested positive for Bartonella. AND we have the exact same symptoms that started at the same time.
We have been working with a doctor that has prescribed a number of antibiotics over the last few years, and while we have made some progress, we have hit a plateau in our treatment. However, she is treating us long distance and cannot prescribe IV antibiotics. Our family physician (a different doctor) is convinced that we both definitely have Lyme, and after being sick for seven years, she thinks we need more aggressive treatment and that we are probably good candidates for IV antibiotics. The problem is that she cannot treat us (she is not ILADS certified and doesn't feel comfortable going down that path without the backing of ILADS). She encouraged us to get in touch with ILADS for a referral (we are still waiting to hear back from them).
Here's the problem: The last time we went to an ILADS doctor a few years ago, he told us point blank he would not treat my husband since his Igenex test was negative. I refused to go back to him knowing that there is no point in seeking treatment if only one of us gets antibiotics since we will just keep passing it back and forth. Not to mention the fact that I want my husband to get better too!
I know we can get a referral to a LLMD or ILADS doctor, but I also know that most doctors will not be able to tell us over the phone whether or not they will treat my husband. They will tell us that we have to come in for an appointment (and probably another battery of lab tests) in order to evaluate us before they can make a decision whether or not to treat us. For us, that means flying somewhere (there are no ILADS doctors in our state) and since most doctors don't take insurance, probably spending several hundred dollars out of pocket just to be potentially told once again that they won't treat my husband.
After seven years of this and I don't know how many lab tests, I don't want to waste my time unless I know the doctor will treat us both with antibiotics and at least be capable of offering IV treatment if they believe it is appropriate for us. I am at my wits end.
I really would appreciate any advice....
Thanks!!