Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835
posted
Hello. I'm writing for a friend of mine. She has a particularly severe case of Lyme (w/ co-infections), with strong MS manifestations. As a next step, she would like to meet with a Lyme Literate Infectious Disease doc (preferably ILADS trained.) Someone who is versed in the possible viruses and other infectious components (in addition to Lyme) contributing to her overall situation.
Her case is just about as serious as it can get (wheelchair bound, etc.). Please send me a PM with any suggestions on who you think would be the best possible doc. She lives in NJ, but would be willing to travel.
Thanks for your kind support.
Posts: 2238 | From East Coast | Registered: Jul 2010
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steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
Start by going to (Seeking a Doctor)....
Good luck!
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835
posted
Thanks! (I'm new to the site.)
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steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
Hi Tammy, how long has your friend been sick? Has she ever seen a LLMD?
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835
posted
She's been sick a long time (not positive, but probably 15+ years). Yes, she has been to LLMDs, and continues still. She has been on long-term meds, many different combos. Hers is a really complicated case. Lyme is a big part of the picture, but she also thinks there may be other viruses, etc. That's why she thinks a LL Infectious Disease doc would be best at this point.
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steve1906
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Member # 16206
posted
How old is your friend, does she need the wheelchair all the time? Has she had any physical therapy?
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835
posted
She's in her 40s. Yes, wheelchair all the time. Yes, lots of physical therapy, although it hasn't seemed to help much. She is VERY Lyme Literate herself and has been aggressive and diligent in her treatment. Her case is a complicated one.
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
I.V. Tigecyl put my lyme induced MS in remission but I still want to be crutches-free & use a wheelchair at times to get things done.
Have your friend also look into CCSVI. Chronic Ceberal-Spinal Venous Isufficiency
I'm looking into it, since I have brain lesions. They are stable but according to the dr.Z of the CCSVI they are caused by buid up of iron in brain.
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