posted
I'm a hard science rational guy and am very skeptical of things that can't be proven. I'm looking for a LLMD doctor because I've had really bad symptoms for a few years now and realized that lyme can cause this. It could be just myofascial trigger point knots or maybe lyme, I don't know. I've seen a doctor that specializes in thyroid, allergies, fibromyalgia, chronic fatigue and lyme disease. We did a WB from IgenX and got ++ or 31 and 41 with a positive for lyme, but negative according to CDC standards. I just sent away a sample of blood for PCR. I don't know how this doctor treats lyme, but he knew enough to use IgenX. He doesn't specialize in Lyme though, but seems very literate. I'm skeptical of a LLMD who only does lyme just because I think they will treat you no matter what. This happend when I went to a doctor for trigger points related to TMJ. He treated just the jaw, but didn't get to the source of the problem. However I can see they could be more knowledgable. I have been diagnosed by a nuerologist as having myofascial trigger points, though I mentioned this to him prior, and he said I should have myofascial release. I found there are very few physical therepists who can do myofascial release and dry needling, but I found one who has a practice in Bethesda MD who wrote some books on trigger points.
I have constant muscle twitching, but only in recent months after taking magnesium, which could be totally unrelated. I've had symptoms for five years.
2005- neck pain, shaky vision reading up close 2007- Chest pain constant 2008 - Vertigo, tinnitus, TMJ disfunction, dizziness, pain in trapezius muscles, back, electrick shocks stabbing in face 2009 - Pain in back, mild pain in arms and hips 2010 - Numbness in face under the eyes, vertigo attacks are gone and so is dizziness, but TMJ pain and rest remains.
I am scheduled to see a nuerologist at Georgetown University Hospital as I was told that only a University affiliated hospital could do the tests to get to the bottom of this if it was something unusual.
I don't trust WB alone and have doubts about PCR and would prefer if somebody could do a lyme culture, even if it took multiple attempts. I don't want to take ani-biotics that will make me very sick and make it hard to work if that is not the right treatment.
I am open to the idea that it could be other infectious diseases, myofascial trigger points or anything else. However I get twitches everywhere now, not just the points of pain. That might not be related, because I would think that would have started a long time ago if it was from lyme.
What doctor do you trust to be skeptical and who is a LLMD?
Thanks.
Posts: 136 | From arlington, VA | Registered: Jun 2010
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
No matter what the test say and no matter how bad you want it to be proven through labwork; lyme is a "Clinical" diagnosis. Lyme test are very inacurate.
A Lyme doctor will treat you based on your symptoms and your history. Some times after a few months of antibiotics the test will then become positive thus backing up the clinical diagnosis.
Lyme is actually a diagnosis of exclusion. When nothing else shows up and all the symptoms fit, it is likely lyme.
posted
The thing is that there is another condition with called myofascial triger point knots, which they are not sure of the cause, which is also a clinical diagnosis. Both of these conditions have much of the same symptoms and are both clinical diagnosis.
Posts: 136 | From arlington, VA | Registered: Jun 2010
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pmerv
Frequent Contributor (1K+ posts)
Member # 1504
posted
PCR is more often falsely negative than even the antibody tests. Have you thought about looking for antigen? IGeneX has a Lyme Dot Assay for urine. You'd have to take antibiotics for a few days to maximize its sensitivity, but then you would have direct proof of infection.
-------------------- Phyllis Mervine LymeDisease.org Posts: 1808 | From Ukiah, California, USA | Registered: Aug 2001
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Siciliano
Frequent Contributor (1K+ posts)
Member # 15920
posted
Hi, applewine--I sent you a PM.
-------------------- I'm sorry but I am no longer accepting any private messages due to my own battle with lyme. Posts: 3897 | From New Hampshire | Registered: Jun 2008
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