Hi, my Dr sent me for bloodwork to test for Lymes Disease. She said its called a western blot test? Is this test accurate? I had a friend who had 4 different tests before it finally showed positive for Lymes. She's also testing me for Lupus and fibromyalgia. My symptoms are sore, achy joints and muscles. And fatigue. What is a LLMD??
You're asking good questions -- that's very important to continue doing.
The initial test for Lyme is a two-step (also called 'two tier') test. First, the Western blot, and depending on the result, a second test may be done, call ELISA. The Western blot has a high rate of false positive results, meaning it says you have Lyme but you really don't. If the test comes back positive, then the second test (ELISA) is done, and it has a high rate of false negatives, meaning it says you don't have Lyme but you really do. Between the two tests, the doc is able to guess whether you have Lyme or not. Because the tests are neither one very reliable, docs are not supposed to rely on the tests alone, but to use them as a data point in the larger picture of symptoms and history. However, because docs are accustomed to relying on tests as the last word, it too often happens that docs who are not Lyme specialists too often rely only on the test results and ignore your symptoms and history. Still, the test is worth doing, and be SURE to get a copy of the results for your own personal file at home. Start building this file now, because it may be useful later.
You friend who had 4 tests before getting a positive result is not uncommon, and some of us never do test positive, but the docs then will sometimes give you a round of antibiotics and retest, because the tests do not look for actual Lyme bacteria in your blood, but instead look for your immune system's reaction to Lyme in your body. A short while after infection, however, your immune system may stop reacting, thinking that all the bacteria have all been killed, even if they have not -- and Lyme has the ability to hide from your immune system so that the Lyme is not fully killed. Then if you have the Wblot/ELISA tests, no immune system response is found, and the doc say no, you don't have Lyme. But actually you could! (There is another test called a PCR test, but only Lyme specialists tend to use it. It measures Lyme bacteria DNA in your blood, not your immune system's reaction to Lyme, and so the test is more accurate.)
The doc is covering the bases by testing you for lupus (which an autoimmune disease, in which your body turns on itself) and fibromyalgia, which is not a disease but a collection of symptoms (a 'syndrome') that the docs don't understand. There is some thinking among Lyme docs that fibromyalgia is really Lyme disease, since there is a big overlap in symptoms, but because the Lyme tests are so murky, nonLyme docs are not comfy diagnosing Lyme and so may call it fibro. There is a strong bias in mainstream medicine against diagnosing Lyme, partly because the tests are not very good, and so the docs (oddly, in my view) would rather diagnose fibromyalgia syndrome than a real disease, Lyme. Go figure.
Your symptoms of sore, achy joints and muscles and fatigue are consistent with Lyme, to my understanding, but I am NOT medically trained.
"What is a LLMD??" That is patient shorthand for 'Lyme Literate MD', meaning a doc who understands Lyme and doesn't dismiss it as rare and hard to get. No doc calls him/herself an LLMD -- it's just slang we patients use to identify a doc who understands Lyme and the hash that the medical profession has made out of diagnosing and treating it.
So. When you get your tests back, feel free to post back here and tell us what the doc said and what your results are, and we'll be happy to chime in and tell you what we would do in your situation, given your symptoms and test results. No one here is medically trained, but we've been through the Lyme mill.
Wow! Thank you so much! That was some great info..thanks for taking the time to answer my questions and teach me a little more! I will definatly post back here when I get my results. Thanks again for your help!
Hi! My drs office just called and said all my tests came back normal. Yeah! But she said she wants to send me to a rheumatory Dr. I think they specialize in body aches? Not sure, but I don't think the way I'm feeling is normal. I have aches in the wierdest places. I hope the specialist can help me. Thanks again for all your help. Wishing you the best!!
That's good news, but remember that rheumatologists are generally in the camp of not 'believing' in Lyme. They and infectious disease docs are two of the strongest groups in not taking Lyme seriously.
And remember also that the tests are NOT the final word, because they are not very accurate. Lyme is a tricky disease that is hard to diagnose, and especially so if the doc relies wholly on those lousy tests. It takes a doc who understands the mystery that is Lyme disease to read the tests while ALSO taking your history and symptoms into account to diagnose Lyme.
If you don't get well or find answers, I would, in your situation, find an LLMD and take all the test results you have accumulated with you, for a second opinion.
and got lots of interesting hits -- many of them are other patient boards like this one, some are dedicated referral sites, so read through a few and you'll start to get some ideas on how to find the right doc for you.
I know when you're ill and exhausted, research is the last thing you want to do, but it really works pretty well and doesn't take as long as you might think. And, if you don't click with the first doc or their office staff, find another. LLMDs are a wide assortment of types of docs and types of people, and some are a little bit odd ... if you get that vibe, or if they seem to be trying to sell you a lot of vitamins rather than practice medicine, listen to your inner voice and find another doc. Like anything, it sometimes takes a try or two to locate the right 'fit.'
You have lots of options in your geographic area, so that's good.
===>>> Also, you might post a new message on this site titled
'Need LLMD in Washington DC area'
and see if any one has recommendations. There are lots of folks who visit our site but don't post often, and so there are resources here that aren't obvious.
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