2nd opinion

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junior24237

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I was diagnosed with Als in 2013, but never got a second opinion. I am going to mayo clinic in Minnesota on 9/2/2015 for a second opinion. I also just got tested for Lyme's disease and my test came back in the middle range so I' m hoping it is Lyme but have read it is hard to get a positive Lyme test. If anyone has any questions I should ask or any info about Lyme's I would gladly appreciate it. Thanks, Jr.
 
I've had Lyme and it's no picnic. It wasn't hard to "get a positive test," either. Last ms link I posted (search for that thread) reported ALS and non-ALS had same percentage of pos. Lyme tests, about 3% if I remember correctly. So the stuff you read about lots of ALS that's really Lyme doesn't pan out, though it makes for a spicy story.

If you've been in an ALS-like progression since 2013, Lyme is really unlikely. My husband's ALS was much different. You may have an immunological "scar" from a past bite, or for no reason at all be reactive. Bring all your labs (and copies of other tests, like NCV/EMGs, MRIs), including that one, but don't expect a change in status, I'm sorry to say. You are certainly entitled to ask if/why/why not Lyme is being considered in the differential.
 
I was diagnosed with Als in 2013, but never got a second opinion. I am going to mayo clinic in Minnesota on 9/2/2015 for a second opinion. I also just got tested for Lyme's disease and my test came back in the middle range so I' m hoping it is Lyme but have read it is hard to get a positive Lyme test. If anyone has any questions I should ask or any info about Lyme's I would gladly appreciate it. Thanks, Jr.

Hi junior! I was just wondering how it had gone with you? Did you get the answer you were looking for in the end? I truly hope so, because living in uncertainty is no picnic in the park. Best of luck to you, and please let us know how it went.
 
Yeah, quite a while since that original message, it would be great to have some additional info on how you are doing now.
 
Well, if you have the Lymme disease then you have a bug problem. People say that ticks or small bugs are spreading the disease from state to state. You need to get rid of those tiny little bugs. There are usually black or brown.
 
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