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Is there an email support group here at NORD for survivors of Lyme disease and the caregivers? A friend of mine just found out that her son has probably had it for the past ten years.
Thanks.
Ingrid/NYS
HSE 12/95 (I was 45 years old)
"Of all the things I've lost, I miss my mind the most." -- Ozzy Osbourne
Hello,
My name is Caroline and I was diagnosed with neuro lyme in 2/2000 after much ridiculousness. My condition was similar to a severe stroke. I couldn't walk, talk, toilet or feed myself, lost my memory except for childhood thru high school and had numerous medical issues (which I still deal with today) with additional deficits affecting hearing, cognition, balance + coordination. My original blood test was barely positive, so it was deemed a false positive. But once I began treatment with an NIH MD (lyme literate), he sent my blood sample to the Stoney-Brook lab in NY and my test result lit up like a christmas tree and I was in the mid range of infection which was significant.
Apparently, the lab you use is of supreme importance. And it goes without saying, the physician you use is important as well since there is an ongoing feud within the Infectious disease community re: chronic or tertiary lyme. I began with an out of state infectious disease specialist in MO, who was lyme literate @ a research institution but he wasn't well versed with anything beyond acute lyme. He caused more problems, some of which took a couple of years to resolve.
After much research, trial + error, I found a good lyme network. Try insoinfo@lymeil.org which is a volunteer group in IL. They are polite, helpful and they RESPOND.
I also recently found an informative website called neurolyme.com and I noticed under "links" that a lyme blog category is listed. If this doesnt work for you, then ask the author of the website for assistance.
Neuro lymes info is accurate, detailed and very helpful and she is a wealth of info. I just started with the magnetic pad that she recommended and the result has been remarkable. I'm already taking less pain RX and don't have to suffer until my next dosage or with break thru neuro pain. I purchased a travel mat with a company in CA (that had the same spects as the neuro lyme site recommended) since I am always concerned with fraud. And this company didn't have any complaints listed against it.
GOD bless -C-
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