My new doctor whom I met last week for the first time and I suspect that I might have Lyme Disease, so I am due for more tests. She is going to send my blood to Igenex, which is good news, because based on what I read here, Igenex is the way to go when it comes to testing for Lyme.
Then when I was looking at my health notes, I came across something that I had jotted down back when I saw a different doctor in 2011. According to this doctor, "Igenex tests are not reliable, because they always come back positive."
I am going to do the test and am looking forward to the results. However, I wanted to post here and see if anyone else heard something along those lines or if people think this sounds like words from a Lyme Illiterate Doctor?
Thank you for taking the time to read. Have a good day!
IGeneX basically proves that the CDC testing protocol is a joke. In order to avoid admitting they are fundamentally wrong about testing and diagnosis for Lyme Disease, the IDSA seems to be running a rumor campaign that IGeneX gives everyone a positive. They can't answer why so many people test negative on the "standard" test but positive at IGeneX, so they simply question the credibility of the entire lab.
That is really silly, because IGeneX has passed all the same stringent CDC and FDA requirements, as well as the extra requirements of CA and NY states. Calling their credibility into question should also call the credibility of these regulatory bodies into question, because why should they allow a "quack" lab to continue to function? If you confront a doctor who blindly dismisses IGeneX, they will most likely become defensive, because they really don't know what they're talking about. (I don't recommend this. Most doctors resent being corrected or having their ignorance or error pointed out. I recommend leaving and finding a different doctor.)
The doc who wrote that IGeneX tests "always come back positive" is indeed Lyme illiterate. I see you're in NorCal. Me, too. Ignorance in this area about Lyme Disease is rampant. The head of a local ER here actually said, "There's no Lyme Disease in California." Which is ridiculous, because there are many well documented studies and cases, as well as official tick surveys and reported cases in every single county except 1. He was educated back east over a dozen years ago, where I'll assume he was taught that it's a New England-only disease. Clearly, he's hopelessly uninformed. Sadly, he doesn't even know what he doesn't know.
I was told in a local hospital that it was "too unlikely" that I had Lyme and Babesia because I'd tested negative for both. Then, I was discharged with a shrug and a bottle of Vicoden, and no diagnosis. The hospitalist admitted he didn't know any Lyme specialists in the area, but then refused to give me an out of network referral to one. He mourned the "waste" of money I'd spent on my IGeneX tests (which I'd just sent in) and told me not to bother going to the LLMD I already had an appointment with.
While you'd think doctors are scientific people who insist on scientific evidence and "proof", in reality I'm finding that a whole lot of them run on hearsay and rumor. They learn something in medical school, and they are loathe to believe it might not be true, even when there is no evidence to support the original belief and plenty of evidence to show it's false.
They hear something from another doctor at a conference, and they accept it as fact, even if there's no proof. They hear a sound bite or two about a "groundbreaking study" and they accept it as gospel truth, even if it turns out that study had a flawed design and the "conclusion" is really just a distorted opinion. They blindly believe anything said by the ivory tower "experts," even though some of them have turned out to be liars or frauds.
I just watched the 60 minutes episode from last Sunday that interviewed a neuroscientist who said we need to revisit "everything" about medicine to see how women are different than men. He said most studies have been done on men. Even nearly all lab rats are male.
More recently, the FDA required the inclusion of women in studies, but never required separate reporting by gender. The scientist in the program said the "results" of such a study could do a disservice for both men and women. By averaging them together (such as deciding which dosage of a drug works best overall), the conclusions could be wrong for both. Of course the FDA rep says that's an overwhelming task and they're not requiring that everything be revisited.
But it's stunning to see the researchers in the show admit they had never questioned the assumptions of their training, which was that it's better to study males because they don't have all those female hormones that can get in the way. It's really laughable to hear them say it out loud. (If the hormones get in the way of your observations during a study, then won't they also get in the way of treatment of women?!?)
It was also stunning to learn that the FDA knew when Ambien was first approved that women metabolized the drug much more slowly. Yet they didn't know what to do with that information and so they just ignored it. Finally, 20 years later, they made the groundbreaking decision to lower the recommended dose for women. And that was only after many years of reports of adverse effects in women. Funny, I figured out almost immediately that 1/2 dose was all I could take, while my husband could easily take the full dose.
Thank you for your thoughtful reply! I haven't heard of a lot of the points you mentioned. I am especially curious to read more about the women's participation in FDA studies. I had no idea women were excluded until recently.
It's really difficult to feel like I am working as a team with my doctor when the doctors get defensive the moment I start asking questions. I hope you were able to find a doctor you can trust and I hope I will get answer from this new doctor.
I know how frustrating it is to go through a doctor who will not listen to you or at the very least, look at all of your symptoms. Often when I bring my other symptoms up, doctors tell me, "they are not relevant," which does not make much sense considering they haven't been able to diagnose and treat me properly.
Good luck finding a doctor you trust and hope you feel better!
I got 3 negative Western Blot tests using the CDC criteria but my symptoms were so Lyme like I went to Igenex and had a full co-infection panel done as well and I was positive for Lyme on the IgM Western Blot AND PCR. Unlikely I'd test positive on both if I didn't have it. I also tested positive for babesia duncani which is weird since all the 'traditional' docs say it doesn't exist in the NY/NJ/CT area. Maybe aliens gave it to me!
Yeah, the aliens got tired of always getting killed off at the end of science fiction movies, so they convinced ID docs to hire them as the newofficial bogey men of medicine.
Sigh. These docs who refuse to revisit Lyme and its co-infections mean well, but they are missing the boat. I remember when AIDS was a newly discovered disease, and the CDC docs went on national TV (complete with long white dr coats and stethescopes) to state flatly that you could NOT get AIDS unless you were either (1) Haitian or (2) gay. Uhhh, *wrong.*
Docs are only human, but that also requires us to double-think the advice we get sometimes.
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