Lyme Disease Support Group

I think JulieGH gave part of the answer. Doctors get flak for ordering the test. Considering a full Lyme-plus-coinfections panel costs $660, it's no surprise insurance companies don't want to cover it. I think if they did, doctors would have less of a problem ordering it. But they would stlll hesitate because the test (WB at least) is so damn fallible.

I don't know why Lyme is not considered a bigger health hazard; if it were everything about this maddening situation would change. For one thing, they'd find the research $$$ and time to finally find a better test.

I'm sure you can find someone to order the test but you'd still be stuck with the uncertainty and the difficulty of treating a three-year old with multiple problems (celiac + Lyme). A terrible situation any way you look at it. I hope she doesn't have it!

-FM

P.S. I'm hesitant to bring this up but claired4 mentioned in her response that if she had hepatitis or HIV it would be a different story... true, because both of those are a) deadly and b) contagious (by blood). Lyme is very rarely fatal and has not been proven to be contagious the way these other two (and the flu, and H1N1) are. (I'm not saying it isn't - just the medical community doesn't believe it is.)

The only argument we have is that Lyme can be crippling when not treated and that costs even more $$$ than the tests and abx do. I'm not convinced that anyone (except maybe some docs, nurses and LLMDs) really care about our health anymore. It's about the money.

-FM

Did you get your daughter's test results yet?

UCSF made my husband and I feel like we were nut cases. We came out of the last appointment humiliated and angry. His previous doctor has cancer, so retired, and were assigned to another. Although the previous doctor didn't make the diagnosis of Lyme (I believe because of the CDC recommendations & negative ELISHA test), he was a great doctor and respectful of his patients.

When we finally discovered that my husband had Lyme (diagnosed by a local doctor), we brought a copy of the IGenx test to show the doctors at UCSF, thinking that they would find it interesting and significant. But they looked at us like we had horns on our heads- one doctor pointed to the test and quietly said to the other, "See, they used a SPECIALTY lab" - wink, wink- code for "we're dealing with loonies here."

It was disconcerting and upsetting to be treated in such a condescending manner- never experienced that before. It was a good experience in that it made us more empathetic to what others go must through routinely.

Thanks for giving me an opportunity to vent, because after a year I still am angry!

LB, I'm wondering maybe they weren't shaking their heads at you when you showed them the Igenex results? Maybe they were acknowledging that their usual lab wasn't the greatest? After all it was UCSF and they probably don't have money for the best labs... like you, I would have expected them to be more interested.

No, they thought we were loonies. It was obvious.

My husband is a lawyer and deals with doctors professionally all the time. We didn't just fall off the turnip truck. But we didn't expect to be treated as such.

They asked "To what degree had my husband's condition improved?" "Do you mean from when he could hardly walk, stand up, move, etc? That would be 90% better". So, they said, "You are doing well and have been successfully treated." We wanted to say "Are you deaf? He has LYME- and you guys couldn't figure it out and NOW he's being treated," but for we didn't. We were rather stunned.

They were not curious in the least , asked no questions about Lyme or the test, and couldn't get wash their hands of us quicker- although we had no intent of coming back.

It was an eye opener.

I'm sorry about your negative experience with doctors. I can only add that I have had many doctors over the past 9 years look at me the same way. It is so frustrating. If the doctors cannot figure out what is wrong with you with a blood test, then they assume you have a psychiatric disorder. I have never suffered from anxiety or depression, yet after every docotr's appointment where they cannot give me a diagnosis, that's the first thing they ask. I'm so tired of trying to figure this all out. I truly wish someone had an answer for me and I had a game plan or plan of action.
Hang in there. I wish you & your family well, Claire.