I have been diagnosised with Lyme,--but I think I have something else?

[ballet1]

Hi,
  I have been diagnoised with Chronic Lyme disease since 2005.  In the year 2000;  I had this horrible flu-like symptom,--went away with a "Z pack",--then in 2 wks; came back and knocked me off my feet!  I had a high temp.-103-104; redness on the face and eyes (this was all happening at night!.  The next day went in to see a DR. of mine; had red spots all over my body (laid into my body), high temp, (still), and couldn't stand to walk, sit, or put any 'weight' on any of my "limbs!!??"  My joints were hurting, my whole body felt like a "sausage" (inflamation),  among other things.  As I went home,--that weekend;  I had a horrible-like electrical current going through my body from my hips to my feet.  Really kept me in a lot of pain for about 2 hrs.  The Dr. then prescirbed Neurotin for the electrical-like pain,--which did help!  My life has not been the same.  For years;  still; People are still unable to 'touch me' in the arms,legs etc...because of the pain still readiating through my body.  I was diagnosed with:  Myalgias;  P-ANCA, High Aldolase, CRP-134(still to this day; my CRP-6!) and I fall, drag my feet (especially when I used to excercise!) and frequently have the "electrical currents or "seizures" going through my body still to this day!  I am currently taking "cortef" 5mg pills- 6 a day.  This seems to thwart off some of the morning seizures I have going from my hips to my feet!  Before this;  I've had;  where my legs feel like they were in "packed snow" (waking up at early mroning hours!),--then, I've had it where i couldn't lift myself out of the 'pool!" or help myself to get out with my legs!  I've always been in good shape physically!  I was a ballerina for over 12 years of my life,--so for ,me to be unable to exercise is unthinkable!!  Yes, my weight has been plentiful!!  my MEMORY has been decreasing since the yr. 2000!  After the seizures;  I do have to stay in bed;  my legs are numb, hurting and I'm exhausted from enduring the pain,--so, I sleep (most of the time).  My MRI's have shown two lesions.  I have not had a full spinal MRI or Tap.  Before all this flu-like symptom started;  aI had a lumbar puncture that went bad...the Dr. put the needle through my spine!  Please let me know what you think--someone told me they thought it might be sarcodosis,--I thought it might be "MS"???What do you think??
Please HELP!
Sincerely,
Ballet1
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[CRNI]

You might have your Ig levels and complements 3/4 drawn to rule out specific immune deficiencies such as common variable immune deficiency and be worked up for MS. Another problem you may need to rule out is Celiac Disease. If you do these three things, I believe you will have the answer to what ails you. Best of Luck! I know, personally, how difficult it is to find the right physician. "House MD" is on TV for a reason. Doctors in real life don't have the time/money/reimbursement (let's call a spade a spade....it is reimbursement) to do indepth studies. You really have to research and push for what you want. Keep up your quest!

[jtherian]

I think you need to see a rheumatologist- they can help specify the ANCA and CRP concerns as well as all of the other issues.  Also, have you seen a neurologist?  I think the rheumatologist is vital however- if you have already seen one- get a second opinion.  

[ballet1]

Hi,
  Thank you for your concern,--I have been to a LOT of Dr.'s whose opinion's all contradict or loose the "point" of my main problems!!  For instance;  would Fibro. have the symptoms of: seizures starting at the hips, going down the front of the leg to the knee, and then persisting down the shin bone then into the foot??  The other info. is that I've been diagnoised with P-ANCA, High Aldolase, CRP-134 and the seizures are only "kept at bay" because I'm taking 'cortef'-30 mg a day!  I am still experiencing the leg seizures (which can last anywhere from 2hrs. to 4-5hrs, a day),--then, my legs (and arms) go numb afterwards.  Noone can touch my body without it causing 'pain!'.  There is never a day that goes by that my fatigue, pain and numbness does not "get in the way" or cause me undo pain and hardship.  After the Seizures;  I'm so exhausted from the pain I've experienced;  I go to sleep and end-up staying in bed!  I'm one person who NEVER sleeps during the day!!-Not even when I was pregnant with my child!!  I was always an active person; never home, never in bed and etc... a ballerina for over 12 years!!  After the birth of my son in '93;  I even joined an 'aerobics' class and was ALWAYS fit!!--Now, I'm lucky if I can jump a few times on the 'reboounder!'
I guess you see my situation,--maybe this and other info,(such as the joint pain, not being able to hold my arms or legs up for a short period of time and any other info, you might like to ask...(I do have mitral valve prolapse too);  please feel free to ask.
Thank you for all your time with this important matter at hand--
Sincerely,
Ballet1

[Enoch Choi, MD]

It sounds like you have symptoms that could be consistent with fibromyalgia.  Has your physician evaluated for that?