I am coming here from the Chronic Fatigue Syndrome universe, fed up with no answers.
I am 27 and have been disabled for about 9 years.
I became "ill" with an onset of knee pain,
to be followed a couple months later by a dizzy spell that lasted 3-4 months,
to be followed by fatigue and thinking problems that would not go away.
The knee pain is not so bad now.
I do have an arrhythmia/tachycardia as of 4 years ago,
and an unexplained movement disorder that hurts like hell,
and unexplained "neuropathy" (for me stinging, burning, and now largely numbness) in my hands, feet,
and sometimes my face.
My neuro symptoms are about 2- 2 1/2 years old.
It has also recently come to my attention that memory loss I was suffering is only getting worse.
I suspect lyme because when I first got sick, docs thought it was certainly lyme.
They thought this because at the time, I was living in the berkshires in Mass, a well-known lyme hotspot.
I also had significant joint pain.
At the time I had a history of bells palsy, and now, to date, I've had 3 CONFIRMED cases of it.
However, every doctor I have seen has run and rerun different lyme tests covered by my insurance.
All negative.
I've been reading about tests that are supposed to be better and LLMDs that are better at treating people.
I understand that even if it is lyme's I will probably still suffer,
but right now I am on symptom relief medication: verapamil and clonapin, and I keep getting worse.
Every year or so I get a "new" fun sympotom,
this past week I've bitten my fork 3 times and now have a chip in two teeth.
I am angry that I am losing motor control on top of everything and this is really lighting a match for me to get this taken care of.
And thus the return to looking into lyme's!
I am used to talking to CFS/Fibro/ME people,
and your treatments are different so I hope you'll be patient with me if I am slow
(I am slow!) lol.
PM me with any doctor you could recommend,
thank you and feel free to share your story or link me to a post where you think I could benefit from the info.
Posted by Nancy2 (Member # 95) on :
PM SENT!!!
Posted by gothbubbles (Member # 20280) on :
Thank you for the PMs! I keep getting told these guys aren't taking new patients ): I ask for them to refer me to other docs and I don't know if they're reputable, but they usually aren't taking new patients either lol.
Feel free to send me more pms lol
Posted by bettyg (Member # 6147) on :
bubbles,
please send me a PM with ALL THE NAMES you have been given, and i'll check my list for others.
note on names being sent they are NOT TAKING NEW PATIENTS also so we don't send others there please.
thanks!!
Posted by Siciliano (Member # 15920) on :