Turned down for trial

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LeoGreene

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Aug 11, 2006
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PALS
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US
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California
City
Pomona
The University of California Irvine Med Ctr turned me down for a trial they're doing on combination drug therapy. Their study involves creatine and minocycline or creatine and Celebrex. Because I'm allergic to sulfa, I can't take Celebrex. And it's a double blind study, so there's no way they would know what I'm taking.
I was wondering, has anyone here been given minocycline by their doctors? If my doc would prescribe it, I could do my own combination therapy.
 
Leo

I've heard of the same info you are talking about in my research. According to what I remember it was in regard to the inherited kind of ALS. Not sure which you have, but it might be worth a shot. I'm in the over 55 group myself, 59 and counting.
I've been taking b-12 shots myself every 3 days to help my energy levels and it seems to help some, but no miracle cure for sure. Good luck in your search, just watch out for the scammers out there.
God Bless,
Big AL
:-D

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minocycline

i was on the minocycline and felt like crap the whole length of the study. felt no benifit but did enjoy the extra, no cost, dr visits.
 
I am so sorry about this turn down!

My Momma had a sulfa allergy as well, and until we found out OUCH! !it was terrible! Bless her heart she was sooooo sick!

I am praying that you are able to do another one, please keep us updated, k?
 
Minocycline

My friend heard of the minocycline too. When she asked her neuro, he said that a recent study showed it didn't help. She asked him to prescribe her with it anyhow, and he did. She also takes creatine daily.
unfortunatley, we have not seen her progression slowing as of yet, but it has only been about 3 weeks since she started the minocycline.

I will let you know if we notice a change.

Barbie :)
 
Drug Cocktail

I found s study from Canada that a cocktail of rilutek, minocycline & nimotop together were more effective than either by itself.. I still here, but hard to say how I would be without treatment. My insura nce pays for it, so I will continue. Time for bed, love Mollye
 
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