Aa
Aa
A
A
A
Close
280418 tn?1306325910

Autoimmune? Docs clueless for 2.5yrs of suffering....

I have no idea and my docs have no idea whats wrong with me.  In sum - developed peripheral neuropathy 2.5yrs ago and it was very painful.  My feet burn constantly, but in 2006 I could hardly walk, had serious weakness in all extremities and could hardly walk up a flight of stairs at 31yo.  I had plasma electrophoresis 2 yrs ago and I barely recall one abnormal result and it was for Ig -something.  I don't remember if it was IgM, IgG, etc.  Now, Johns Hopkins found a positive ELISA for Lymes, but I don't recall getting a tick bite or a bullseye rash (which doesn't always happen with lymies anyway).  As I sit here and type, my body has random twitches all over.  My feet are burning, as well as a random patch of skin on my stomach.  My left foot feels like it is "buzzing" for lack of a better word and twitching.  I am fatigued all the time too.  These symptoms come and go.  I forgot to mention I also had moderate to severe dry mouth right before all these symptoms began and it persists, just not as bad now.  I have NEVER seen a rhuemy or immune doc, as my first neuro diagnosed me with fibro and the two rheumys in this town do not accept fibro patients (which is offensive!).  Any ideas would be greatly appreciated.  Thank you!
8 Responses
Sort by: Helpful Oldest Newest
280418 tn?1306325910
Still looking and not even close to a diagnosis yet:(  The ELISA is just a screening and apparently has to be followed by a Western Blot.  Even if that is positive, Lyme Disease is a clinical diagnosis and my doc would have to take into account my symptoms, pos. test findings, etc.
Helpful - 0
Avatar universal
Hope,

Are you saying that it has been determined that you have Lyme disease or are you still looking for a diagnosis?
Helpful - 0
Avatar universal

I know that people who have Sjogren's Syndrome, an autoimmune disease, can have an abnormal SPE. These people, including others (based off the latest research) who have Th1 inflammatory diseases are at higher risk for cancer ... due to pathogens. If you checked out the links below, there are treatments for these infections and you don't necessarily need a diagnosis to start treatment.
Helpful - 0
280418 tn?1306325910
Oh yes I did have the SPE done about 2 yrs ago and the results were a mild positive on IgM I think.  i don't remember exactly.  My neuro felt it wasn't a strong enough "positive" to mean anything. Who knows??
Helpful - 0
Avatar universal

Hi ! Oh.... okay. Yes, there is a blood test serum protein electrophoresis (SPE) and they do the testing off of the plasma in your blood.

Your symptoms do sound like lyme disease or fibromyalgia. As I stated earlier, there are treatments that are helping both fibromyalgia sufferers and lyme patients. Check out the websites for more information or check out http://www.roadback.org/

ITP is a condition that causes a low platelet count.
Helpful - 0
280418 tn?1306325910
Hi, thank you for the replies.  I haven't had plasmaphoresis and its never been mentioned.  I have thought about and researched Guillian Barre and I could have had a mild case of it, b/c some people go into respiratory arrest.  I didn't near that thank God!  Also, GB is acute and happens really fast.  Mine was a little more gradual, with the toes then a couple weeks the foot, then more weeks on up to my knees.  It took from summer '06 to Dec to get to my worst state of health - barely walking.  I don't know, and I don't think many docs know.  I would like to try some treatments if they don't have side effects, definitely.

PS...What is ITP?

Thanks again!
Helpful - 0
Avatar universal
"Johns Hopkins found a positive ELISA for Lymes"

The GREAT news is that even without a diagnosis, there are various treatments to fight infections that are found in not only lyme patients, but CFS, fibromyalgia and patients who have autoimmune diseases as well.

Check out these links for more information:


http://www.immed.org/illness/autoimmune_illness_research.html ----  "Rheumatoid Arthritis, Multiple Sclerosis, Lupus, Inflammatory Bowel Diseases, Scleroderma and other Autoimmune and Degenerative Diseases"

http://www.immed.org/reachus.htm ---- about Dr. Garth Nicolson


Helpful - 0
Avatar universal

Plasmapheresis for ITP or Guillian Barre Syndrome ?
Helpful - 0
Have an Answer?

You are reading content posted in the Autoimmune Disorders Community

Top Autoimmune Diseases Answerers
1756321 tn?1547095325
Queensland, Australia
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.
Can I get HIV from surfaces, like toilet seats?