There's a huge problem with Lyme disease (Borreliosis) beyond the disease itself. The path to correct diagnosis is a rocky one, riddled with false turns that will devastate your health and suck your resources for years.
If you think you might have Lyme, you'll be searching for good information, and naturally it would seem that you should turn to our medical doctors, who learn from their medical societies and the government. It's an entirely rational thought. But think about it: you have an underlying assumption that what they say is unbiased information and scientifically proven. Why wouldn't they? Isn't that their job -- to correctly diagnose you and treat you accordingly? It is. We thought that too. And we were wrong.
The truth is much more complicated.
Much of the information doctors know is not only wrong but it can hurt you and cost you. Why? Because the governing body of infectious disease doctors, the IDSA (Infectious Diseases Society of America) is not interested in treating Lyme. They are heavily involved in bringing Lyme vaccines to market. They are the gatekeepers of research money, and it's not going into treatment research, it's going into vaccine development, which is where the money is. Presently, they are under investigation by CT state attorney general's office for possible anti-trust violations, so we are not making this up. ( IDSA Investigation ) If they had the potential to vaccinate every citizen in the US, that's 250 million people! It's a LOT of money at stake, especially if you own the patents!
So let's talk about the first false turn to correct diagnosis that you are likely to take when you visit your doctor -- and let's imagine that you actually know you were bitten by a tick. You ask your doctor to test your blood because you've read that there is a blood test for Lyme. And you assume that it's like getting tested for HIV: it's an accurate test with a yes or no answer. You get the test, and it comes back "negative." Your doctor says that it's not Lyme.
What you didn't know is that:
1. If you test shortly after a tick bite, there is a high likelihood that if you are infected, it will not show up on any test for about six weeks. So a test too early after the bite is not a good test. You doctor may not know that.
2. Not all labs are created equal. Presently there are two government licensed labs worth sending your blood to-- IgeneX and MDL. These labs specialize in testing for Lyme and other tick-borne illnesses. Unless your doctor is up to speed on Lyme, your blood will not go to either of those labs. They will use the lab (often Quest) that your insurance provider covers.
3. The first tier test generally ordered (the less expensive ELISA) is very inaccurate for Lyme at best, no matter what lab you send your blood to. But you don't know that! You don't know that the ELISA for Lyme is estimated to be wrong anywhere from 30-50% of the time. It does not even come close to scientific efficacy of being at least 95% correct, yet it is the gatekeeper test! A negative ELISA will end the question of Lyme with most doctors. You'll be prescribed pharmaceuticals for your symptoms and if there is Lyme, it will go untreated. This is what happens to most people. It happened to us.
4. The Western Blot for Lyme (the 2nd tier test that you will get if you happen to have a positive ELISA) is more complicated. It tests for bands of reactivity, which are numbered, and each band tells a story and points to something.
For instance, Band 41 senses the flagellate tail of a bacterium and is not specific for Lyme. However, most Lyme patients react positive on Band 41. Many infected with Lyme ONLY react to Band 41. It is thought that the Lyme bacterium, Borrelia burgdorferi, which is a spirokete -- meaning its a corkscrew type bug that drills into your cells and tissues -- has an interior coiled structure that is not a tail, but is like an internal tail, and this may be why Band 41 reacts.
(The backstory: The most Lyme-specific Western Blot bands, 31 and 34, were taken out of the differential by the government when there was a Lyme vaccine (LymeRix) that came out but was eventually pulled off the market. If you had the vaccine, you would react to those bands. So they removed those bands from the differential. Today, you can test positive on those bands, not have had the vaccine, and those bands will not be counted towards a diagnosis -- unless you are seeing a Lyme specialist.)
You don't know what bands the lab your blood went to is testing for.
There's a range of bands, all of which point to something specific, but with the exception of MDL and IgeneX, other labs don't test for all bands. How would you, the consumer, know? You don't, and your doctor either doesn't know or doesn't disclose this important fact to you.