Muscle fatigue/weakness, fasciculations

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lgelb

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That questionnaire is pure hucksterism. It would be best used as a screen for depression, given the subjectivity of the rating scale. If you are depressed, everything becomes "moderate" or "severe."

Despite what you have "heard," today's Lyme test results are considerably better than a coin flip, though positive "Lyme literate lab tests" certainly flip a lot of coins out of people's pockets. Most seriously, people have died from the cash-only over-treatment propagated by ILADS members and others.

If you want to save yourself and your wallet at the same time, may I suggest attention to the food, drink, sleep, calm, exercise and stretching that you are providing your body. Each of these is under your control, and when they all work together, they are very powerful influences on health.

As Nikki says, stop back if/when you have a clinical diagnosis to share, and I would add, don't hold your life hostage to the notion that you need one to feel better.

Best,
Laurie
 

concern3d

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My previous thread is here (please merge). I received a diagnosis of Lyme disease.

I had a positive Lyme blood test through IgeneX, which is a CLIA certified lab approved by New York State. I received the results directly from IgeneX and am confident in their authenticity. I also had a LabCorp western blot come back with a positive p41 band (IgG/IgM), but their testing wasn't sensitive enough to pick up other bands. I found a doctor who was touched by Lyme disease; he doesn't treat it but is passionate about the topic and was able to order the tests. The IgeneX tests were also recommended by at least one other medical center's functional medicine program. Many people just don't know how inaccurate conventional Lyme tests are. Next, I have to find someone to treat it and am in the process of doing that. I would strongly recommend the book "Why Can't I Get Better?" by Richard Horowitz for anyone seeking an education on the topic. I was lucky I found someone to guide me through the process; a lot of education was required to first find the right doctor. I had three other Lyme tests come back negative at first, and a friend of a friend who had a number of negative tests before she was finally diagnosed with a positive IgeneX test.

The tinnitus in my ears should have been a telltale sign, but even the neuromuscular doctor said they couldn't think of a cause to tie together my constellation of symptoms. I've seen other people here with the same symptoms, and while I can't contact them due to forum rules, I would sure hope someone will tell that person and others that there is hope and they need to get an accurate test to see if they can be treated with antibiotics (whether IV, oral, or in combination) and/or other therapies.

Best wishes to all.
 

lgelb

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Again, IgeneX is part of a worldwide paradigm that is more a matter of faith than science, and CLIA status (which was hotly debated and ultimately political) in their case only means that they can reproduce the same results test after test, not that their assays represent clinical reality.

As you point out, it's not easy to eke out a positive result, and that goes to the relative rarity of Lyme, not the inaccuracy of the tests.

Antibiotics carry considerable costs in every sense. It is disturbing that you are confident of a cure that you have not yet undertaken, for a disease that the preponderance of evidence says that you don't have. I encourage you to research further before subjecting your body and wallet to this approach.
 

Bestfriends14

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I could not concur more with what Laurie says. I've seen more scams than not with the whole "positive Lymes" test. All to the severe detriment of people's wallets, one who could have lost his life, and one that did. The ridiculous treatments proposed for "Lymes" is witch doctoring at its finest. Buyer beware in this case.
 
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