Old 12-26-2006, 01:15 PM #1 (permalink)
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Default Scared-someone please help!

Here is the story: a 36 y.o. healthy male with a young family is having muscle weakness in this hands, left wrist and muscle twitches. The neurologists seem to think it could be ALS. Of course, they cannot diagnosis him with ALS until more symptoms present. Bearing all this in mind, about 1 1/2 yrs ago he was bit by a tick, had lyme (with presentation of the bullseye rash), went to a physician who gave him a one day dose of antibiotic and did not put him on an extensive antibiotic therapy. When he recently had blood work done at the neurologists request, they tested him for lyme (anything over 1.0 is positive, anything between 1.0 -0.0 is "equivacol", and 0.0 is negative). His test results came back as 0.91 and the neurologists read this as a negative.

We have been following up with infectious disease Drs hoping this is a case of lyme disease. A "lyme literate medical doctor" said that he most likely has lyme and it is unclear if the lyme has progressed to ALS. This Dr. said that by going on meds to treat the lyme could speed up the progression of ALS, slow down the progression or even cure him all together. At this point we are going to follow-up with an infectious disease specialist.

My questions to this forum are: could it be possible that lyme has brought on ALS, could it be that he just has lyme, if he has both ALS and lyme how do we know what to do --does he take the lyme medicine, not take the lyme medicine .....HELP! This is all so new, has made for a terrible holiday season, and we are very scared. Any advice would be greatly appreciated.

Thank you.
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Old 12-26-2006, 03:40 PM #2 (permalink)
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Hi tg0811,

OK, first off, lyme doesn't cause ALS. Lyme disease is similar to ALS in terms of the symptoms but they are two different animals.

Second, perhaps by way of coincidence, he developed ALS while he had LD, in the same manner that a guy might get cancer while he had a cold; one didn't cause the other, it was just incredibly bad luck.

Third, get LOTS of medical opinions! When I was diagnosed I had no less than seven different opinions. Was I worried about insulting a doctor by seeking others? I didn't care as this was my life I was talking about.

I don't know anything about the meds for LD and if they make ALS worse...to tell you the truth, that's the first time I've heard that. Like I say, get a few opinions.

I know it's easy to say "don't be scared", hell, I was scared out of my skin! But I will say that the fear will pass, no matter what the prognosis. There isn't any magic remedy to stop you both from being scared of the unknown, but know that we are here for you, on this forum, for anything you need to say or any advice.

Good luck and God bless!
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Old 12-26-2006, 04:58 PM #3 (permalink)
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Thank you Mike!
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Old 12-26-2006, 04:58 PM #4 (permalink)
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Hi The best test for Lymes is a Lumbar puncture and Lymes mimic ALS but does not cause it. Good Luck Pat
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