hi there - they have spoke with me about meds but im so scared to take them :(
my neuro wants me to take rebif and i just dont know if thats best. ive been hearing alot about minoclycline and lpn i think? my dr hasnt even heard of mino. but ive read and chatted with someone who is taking it. he seems to think my case isnt to bad from looking at me but he hasnt got my results back from my spinal yet so im still scared that this is going to be a bad case of ms.
i guess im so worried because i feel so bad right now but i keep telling myself that doesnt mean im progressing it just means its a bad time and maybe to because of my steroids. what med. r u taking if you dont mind me asking?
ive been doing lots and lots of research and ive found many places that tell you to modify your diet to the fullest - no dairy - very little to no red meat - nothing fried - little caff. - no way never art. sweetners very little sugar other than honey - lots of friuits and veggies - fish - chicken. then all the vit. from cod liver oil - probiotics - immune bulider - mega b - and colon clense.
normally i wouldnt take things to this limit i just feel like this would make a big diff. from listening to others experiences. i would your sugg. on it.
I hope you are STARTING your research at legitimate credible sites, like the National MS Society website -- www.nmss.org
-- where you'll find all sorts of credible information, starting with the fact that all the diet stuff you've found won't do much for your MS. If you need to lose weight it might help, but none of the rest of it is credible, reliable, or useful to control your MS.
As for ldn -- that hasn't been approved for use for MS by the FDA, and you will have difficulty finding a doctor willing to prescribe it. There is some evidence that it helps some people with some symptoms, and lots of anecdotal evidence that it slows progression, but until proper scientific double-blinded tests are completed (and they are underway, and the National MS Society is helping to fund them), I'm way skeptical.
Is the "someone who uses minocylcin" a doctor, or just "someone"? Like your doctor, I've not heard of where that is generally prescribed for MS, either.
I've been on Betaseron for 14 years. It's an interferon drug, like the Rebif. Yes, it has side effects, but then so do MOST medicines, even common aspirin.
Please understand that you'll hear LOTS of stuff, and read lots of stuff on the Internet, claiming to "cure MS", and "the medical community doesn't want to cure MS but we have the cure here, just send us lots of $$ and we'll send you this (snake oil) that will CURE it"....and most of it is bogus.
There is SOME limited evidence that the Atkins diet is useful, and lots of evidence that reducing your red meat intake and increasing your fruits and veggies is a good thing -- but that's a general dietary suggestion, not one that means that doing that will particularly help..or harm..your MS. If there WAS a diet that guaranteed it would help MS, most of us would be on it. If there were medicines (other than Avonex, Betaserion, Rebif, Copaxone) that CURED MS, we'd all be taking them. There isn't. Don't get fooled, and don't waste your money chasing "promises" that have no validity to them!
...I am not a doctor, nor health professional, and don't pretend to be one, here.....