REAL Lyme symptoms?

[dazedmom]

All right, folks-- Could those of you who have actually experienced lyme disease tell me if my teenage daughter sounds like a likely candidate?  Her ELISA was negative (but so was every other test they've run on her!) and drs aren't interested in following up with a Western Blot.  I'm trying to decide whether or not to push.

First, I should say that she never had a tick bit that we know of, although she was definately in some tick-y areas first week of May.  Also, she spent two weeks in rural China at end of March, so no telling what she might have gotten into there.

Symptoms:  At end of May, she woke up with a wobbly ankle... it just rolls outward when she walks.  She can stand on toes, but not on heel.  During testing, drs discovered some numb areas on leg and opposite arm.  Her leg went completely numb for about a week this summer, then went back to just wobbly after she fell and her back seemed to pop.  (No, she has no back problems,according to numeous MRIs and CT scans).  She has extreme fatigue and back pain.  No headaches, fever or other "viral" type symptoms.

I've discovered I can pull anything from any description on internet and make it fit her... so I'm asking those of you who've really been there.   Does this sound at all like lyme--or another tick disease--to you?

Thanks!
dazedmom

[paul_zone5ct]

Yes ILADS stands for International Lyme and Associated Diseases Society.  It is a group of doctors who treat Lyme seriosly, and they treat it aggressively. ILADS is "at war" with IDSA, the Infectious Diseases Society of America which established the guidlines for Lyme testing, diagnosis, and treatment which is turning out to be a disaster because it misses so many Lyme cases and inadequately treats the rest.  Our Attorney General in Conn. sued IDSA and forced them to reconvene the panel that establishes the guidelines, include a diversity of medical opinion on the panel, and revise the guidelines as necessary.  If you go on the ILADS website there is alot of good information there.  -Paul

[patsy10]

I meant ilads.org.  It's the international lyme disease association.

[patsy10]

It can come and go, move to different areas or be continuous.  Generally speaking, it usually changes from day to day, hour to hour, minute to minute.  It causes really bizarre and scary symptoms.  Some typical symptoms are numbness, tingling, twitching, weakness, fatigue, brain fog, muscle pain, joint pain, nerve pain etc...You can learn a lot and post questions at lymenet.org and iliads.org.

[dazedmom]

Would the numbness come and just get worse, or does it sometimes go away?  Ditto for wobbliness?

Also, (and I'm sorry to be stupid), but what's an ILADS dr???

dazedmom

[paul_zone5ct]

Numbness and wobbliness in the egs, and numb spots on other parts of the body are definitely symptoms of neuro-Lyme.  Get her to an ILADS doctor ASAP.  The doc will send the blood to IGENEX, a lab in California that does the Western Blot, but looks at more "bands" so it is more sensitive.  I've had symptoms for 15 years, and standard Lyme tests, ELISA and Western Blot were always negative.  Standard Lyme tests have a HUGE number of false negatives.  Don't let these so-called "mainstream" docs play russian roulette with your daughter's health.

Good Luck.  -Paul

[bruce622]

Lyme disease should be ruled out! sounds like she may have been in a position to have gotten bit. She could have been bitten on the scalp.I am one of those who didn't exhibit the EM rash ,even w a tick embedded in my skin. the best way to rlue out Lyme is to have a blood test run through igenex labs for a Western Blot IgG / IgM test. You can google igenex labs for more info.