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Originally Posted by NicoAvA
Hi everybody
Coming to an underlying cause, they ruled out the Lyme (haha, what a surprise). Even though I have a confirmed first stage of the disease, the tests they performed at the hospital (blood and from lumbar puncture) all came back negative in Igm and Igg.
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Lumbar punctures are well known to come back negative in patients with late neurological Lyme disease. One of the more prominent LLMD said he only saw it come back positive in 9% of his Lyme cases. So I wouldn't put too much stock in this.
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Originally Posted by NicoAvA
I was blown when a neurologist I saw told me that "Lyme is simple to treat, you had the antibiotics blabla and even if you still have it now, this is too late to do anything..."
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Don't be too let down by this. This is what the neurologists are incorrectly taught. If they actually had the time to sit down and review the whole body of medical literature on Lyme, instead of relying on medical school, they would find that this topic is way more complex and nuanced than they were originally taught.
Quote:
Originally Posted by NicoAvA
I don't know yet if I will be able to have a skin biopsy shortly.
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Don't worry about this too much. If the opportunity presents itself, definitely get it done. However, the most important thing is finding the cause to your symptoms.
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Originally Posted by NicoAvA
Madisongrrrl, your doc thinks that your SFN is immune mediated and not caused by the Lyme itself (or co infection), am I right? So what can be done to stop this process?
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My SFN is caused by Lyme and is likely immune-mediated due to the presentation. I have whole body neuropathy symptoms with face and trunk burning, which means that it was my nerve roots that were damaged.
The damage some of us suffer from is due to the immune system chasing the bacteria around our bodies. Reducing your pathogen load through proper treatment will make a difference. The first thing I noticed after I started treatment, is that all my hand pain reversed very quickly. I'm still assessing what is getting better and what might be damaged indefinitely. It's a work in progress.
Here is another great article that I just read where a Yale-trained doctor goes point for point with an IDSA doctor and demonstrates that this is not a black and white disease.
Yale-Trained Doctor Refutes Dangerous Misinformation Given by CDC's Dr. Paul Mead on Fox 5 Lyme Special | The Huffington Post
Here is a 2 part article with the same doctor.
Where CDC Guidelines Fail, Leading Lyme Doctor Succeeds (Part 1) | The Huffington Post
Where IDSA Guidelines Fail, Leading Lyme Doctor Succeeds (Part II) | The Huffington Post