Gary- My sister was diagnosed with MS a year ago after 3 years of not knowing what was wrong. They actually diagnosed her because she has lesions on her spine. She did have a lumbar puncture done and nothing showed up in it. Her main symptoms are numbness in her hands and pain/tingling.
They diagnosed her clinically because of the spinal tap showing nothing. She also has lots of back problems but they said it was sciatia. She has been on daily shots for a year now and is stable.
She went to a couple Lyme MDs who said it wasn't Lyme since she had a negative test. She lives in Mass so in my opinion she could have Lyme but seems to be doing well with her treatment. She has no other MS symptoms at all. In fact she is doing much better than I am.
So I guess you could read up on MS and see how they actually diagnose people and what they use to do that (labs, MRI). I believe when a person doesn't have the standard MS symptoms then you are diagnosed clinically like Lyme.
She had to go to the MS center in Boston to finally find out what she had. She actually was first diagnosed with Fibro..
Its interesting.. I went to my PC yesterday (he for 5 months has run ALL sorts of test to see what is wrong), I told him I was seeing an LLMD -of course nervous he would lecture me. I told him that though I only tested pos 31 and IND on 34 41 the LLMD feels I have lyme due to my symptoms etc. I told him she gave me doxy, zith and flagyl and we will retest in 6 wks. He explained to me the doxy is fine--its used for acne, the zith is slight in terms of meds (they give it to peds patients) and the flagyl I just need to be careful with alcohol. He said he saw no issue in doing this for 6 wks. (I think it I dont test pos at this point the LLMD may stop the meds) even if I dont have lyme. He was very open about this, which was nice.
If I do test pos for more bands once die off occurs (hoping I do get more + so that I feel more assured it def is Lyme), then I plan on educationing my PC on this disease.....
You are lucky for the rash. When I asked my pc if he has ever treated anyone w lyme, he said two people but they had a rash. I told him that less than 50% gets a rash and he was shocked.
If 31 is so specific why doesnt the CDC use it?
Wow lots of posts, and that is great and interesting. Actually my doctor when trying to figure out what was wrong with me (I did get a dx for MS) But before all of this, he thought maybe I had a parasite, and gave me three/four weeks of Flagyl to take to rid of the parasite if in fact I had one.
Well, I did this antibiotic, and nothing imprioved....still had the dizziness, vision problems, nervousness, trembles (note - not all at the same time - one went and something else would happen).......so from what I am reading here - even after a bout of Flagyl, no improvment.
I have always wondered in my mind if there was a possilbilty of having Lyme..... however I am on a treatment called copaxone, and have been for a year. After about three months of taking this injection, I started to feel better, and today, I actaully feel pretty good. When I get tired, or exposed to heat, my fingers and hands tingle and go numb, and sometimes my head feels a bit dizzy, but if I lay down and have a nap, it goes away. So with being on Copaxone, and feeling pretty darn good, and seeing that I did do a antibiotic thing, I am starting to be more sure of the fact that I do have MS.
Hi Gary. Did you have an MRI? I assume so or you would not be in treatment, right?
I am glad that you are starting to feel somewhat better
Post Edited (kitty9309) : 11/21/2008 6:13:27 PM (GMT-7)
See this is what I guess puzzles me and makes me fear maybe not lyme for me. Why would the CDC have this big consipracy to not help people with lyme? That does not make sense to me. Why would they not put this disclaimer if these were pos lyme bands as they have with so many other diseases? After all, they want to keep diseases under control. Then part of me looks at lyme drs and I think,well what do they and these lyme labs have to gain with these bands-oh, more positives and more treatment more money. Now DONT GET ME WRONG. I am sooo happy for LLMD and these labs, after all I am getting treatment for what could be lyme. BUT I have to say it raises some questions for me and my own dx--only because I like hard facts, like if I did have more bands per CDC positive-I would feel more confident.
Its all so confusing. I will do that search--thanks for this info!