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Old 10-28-2010, 09:28 PM #8 (permalink)
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Join Date: 2010
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Join Date: 2010
City: Auburn
State: Alabama
Country: US
Posts: 71
kelly11016 is on a distinguished road
Default Re: Why ALS and not Lyme?

About the pain thing with multiplex....The only pain I started with was mysterious lower back pain that was ridiculous to the point I would be immobile after I taught my cheerleading classes. None of my neuros considered this in the differentials when I was in the diagnosis process.

My ALS doctor asked about back pain and I said ridiculous and she put two and two together. But no pain in my limbs where there is denervation. Since my two rounds of Rocephin I no longer have the extreme back pain.

Again a lyme infection doesnt cause atrophy...a multiplex secondary to Lyme's causes the denervation which in turn causes atrophy. If you have a multiplex, when your muscles renervate as best as possible you may see some improvement in atrophy but I must include that most atrophy will not improve even if you cure the Lymes and you start to renervate without further denervation.

A true Lyme infection will not take years to cure. I was only on Rocephin for 2 months and I've had active lyme knowingly for 2 years and I contracted it over 7 years ago at least.

I hate to say it but in your case...you are like me.. a wait and see situation. It sucks but 6 months another EMG will shed light. And if you are like me...they will do a new clinical exam and if that has improved they will have to take back the diagnosis of ALS. I improved over 6 months so they took away the threat of ALS as my differential and even took away my multiplex diagnosis.

Good Luck with everything...and yes probiotics are key. My fungal infections got way out of hand. My ALS doc prescribed me so much diflucan bc I was actually starting to have Bulbar symptoms with my speech and swallowing just due to yeast in my mouth and throat. Yuck! All that finally cleared after 4 months but had I taken pros I'd never had those problems.

Much love and luck..if ya need me I'm here.

Kel Bel
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