Hi, all. I found this site and another MS board after my dh was dxed with MS a few weeks ago. After some research and persistance (and finding good specialists at teaching hospitals here in Philly for second and third opinions) he was REdxed with Lyme.
He's on IV abx and doing a little better each day with his vertigo.
My question is this: do any of you wonder if you are in the reverse situation? That you have MS and not Lyme? How do you know?
In my hubby's case, he had no lesions on brain or spine, normal evoked potentials, only one "attack" (current one), is over 40, and we are INFESTED with ticks and deer sleep in our yard every night. Plus, his early symptoms (flu) and lack of eye/vision problems point more to Lyme.
But I was wondering. There are folks on the Lyme boards who have far less "MS sounding" symptoms than many of you on this board.
Thanks.
Posted by vachick (Member # 8353) on :
I had normal evoked potentials and no brain lesions either. They ruled out MS for me.
The neuro thinks it is possible metabolic disorder/muscle disease.
My internist thinks it is chronic Lyme.
Here is the funny part:
My neuro is the head of neurology at a teaching hospital in Wash DC. I was told by his resident that he is in the camp that does not believe in neuro Lyme.
My internist just gave me a paper this morning that he is trying to get published at the very same teaching hospital!
HAHAHAHA. Doctor against doctor. Let's see who will be right. Maybe one, both or neither!!
Posted by Gabriella7 (Member # 7862) on :
I was dx'd with Progressive/Relapsing MS over 3 years ago. After reading Dr. Patricia Coyle's book on Progressive MS and what might cause it, I came across the unidentified spirochette theory as one of the causes.
So, I looked for a LLMD and found the one who is treating me now. He tested me with electro-dermal tests which have been used in Europe for years and I tested very high for Lyme BB.
My MRI's showed the white spots in the periventicular area of the white matter. The last one also showed a dark hole which I believe is irreversible. I've been sick for years and years.
Since there are no treatments for Progressive MS, I have nothing to lose and everything to gain by treating this aggresively. I don't care what they call IT!
Gabriella Posted by 5dana8 (Member # 7935) on :
*Find a Lyme Literate Doctor *Get tested at IGENEZ *Start on ABX *If a person doesn't herx or get any better that would be diagnositic as far as lyme vs ms
Just my personal opinion
Posted by Michelle M (Member # 7200) on :
Hi Lunas Mom!
I'm so glad you hung in there and didn't take MS for an answer for your hubby. Good for you!
I had brain lesions and abnormal evoked potentials. However, I lacked some of the other classic MS signs.
I resisted an MS diagnosis because I recalled a tick bite with a rash (though had dismissed it stupidly at the time, thinking Lyme was not in this area).
Before submitting to any MS "treatment," I wanted Lyme investigated thoroughly, so I read up on it HERE and did research, and found an LLMD with help from LymeNet.
I told the LLMD right off, "If you think I have MS and NOT Lyme, please send me back out the door."
They just laughed and said, "Well, we are pretty sure you have Lyme, and anyway, we think Lyme causes MS, so we probably wouldn't kick you out the door."
And that was just from my clinical presentation; the IGeneX had not come back yet with highly CDC positive bands.
I herxed like crazy on each new med. There is steady improvement, albeit sometimes slow.
With MS, there's no real 'treatment' per se, only symptom control.
So many people with MS might be helped but a surprising number are very resistant to the idea.
Glad your hubby's not one of em!
Michelle
Posted by flyers999 (Member # 1397) on :
Is that the doc associated with the University of Penn? I heard about him secondhand. Apparently there is a lyme friendly doc there that thinks that 1/2 of the area has lyme. It is encouraging but he is not an llmd. If your hubby truly wants to rule out lyme as a possible cause of his symptoms , he has to visit a real llmd.
Posted by klcst (Member # 3427) on :
I find it very interesting that there is currently MS researchers that are using antibiotics to treat MS. The thinking is it might be infection based. I was diagnosed with "MS like". I did not have the lesions on the brain, yet. It can take up to 15 years before signs begin to show on MRI, and yet some diagnosed with MS never have lesions show up. I went on abx for Lyme and I am responding beautifully. It has been a long hard road to get there. A few setbacks and a lot of patience, but my balance is good and the neuro issues continue to improve. There are researchers in Lyme that believe that MS is Lyme, but a more aggressive strain. Time will tell I suppose. Wish you well. Lisa
Posted by mlkeen (Member # 1260) on :
It would seem to me that if abx reduces symptoms then you are dealing with a bacterial infection. What it is called is for the docs to argue about.
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