OMS diet plus lean poultry
Tecfidera as of 8/21/2014
18+ brain lesions and 6 spinal lesions
I got my script for it from my GP. He had prescribed Naltrexone at full dose previously for alcohol or heroin treatments. I have known him for a while, he knew there were few treatments for my MS and so he was compassionate to my situation and the other thing that made him very comfortable with it was just how low a dose was involved. He basically thought it would do nothing, so there was no harm.
Personally, I wouldn't go this route. We already have enough issues with excess cortisol and aldosterone. That said, a lot of people take it so maybe it is worth it.
mmpetunia wrote:did you take her/him research? or gave a persuasive speech about how LDN would benefit you and your particular circumstances? just trying to figure out what has been working for others so that i can try it
I did a bit of both.
Prior to going to the appointment, I went to the only compounding pharmacy in my town and found out where they get their LDN powder, what they use for filler, how much it costs and a round about number of how many LDN scripts they fill.
I brought the doc some info found on the web that she barely looked at. Then I was brutally honest telling her that nobody knows much of anything about MS. I suggested that the way it works is this: If the Extavia the neuro is pushing seems to work, he pats himself on the back for being a genius. If it doesn't he switches drugs. Nobody knows if success or failure is just due to being in remission. I didn't think that screwing with my immune system and the long list of side effects was a good starting place.
LDN has none of the problems and stands just as good a chance of doing something good as anything else and if it doesn't seem to do anything, I'll try Extavia after 6 months of LDN.
I don't know why but my cognitive problems cleared up right away. Physically nothing has changed much with balance and numbness and all that stuff. I can live with that and I'm still popping my LDN @ 1.5 mg 8 months later.
I have been taking 3mg for about a year now and I am trying to get my neuro to reduce my dose to 2mg.
I have noticed improvements in sleep, energy level, bladder control and brain fog but my leg stiffness is way worse than it was when I started LDN. My legs are so stiff and heavy that I walk very slow and I can't walk far. People say it is dose related and trial and error helps to figure out your correct dose, don't give up right away, it takes time.
Dx RRMS 1990
took Avonex for 15 years
Dx SPMS 2013
started LDN 3 mg. 11/2013
The first neoro i went to basically said there are 6 meds, none of them work, and all cost 3x what you make in a year. Which do you want? Paraphrasing but thats what i took out of it. The more i read the more i find that says the same thing. The "best" kills you, the 2nd best doesnt outperform d3 and barely does better than placebo. After much research i called her ref ldn and antibiotics, she said she would prescribe 1 week if i wanted and that was it. I talked to my general who i really like and he didnt want to do the long term scripts either.
So i order my own.
The first 2 days after starting both ldn and abx, i felt better than i had in years. Not just stuff from yesterday is gone better, but i dont remember feeling this good ever better. Then the abx started catching up to me.
Anyways, ive been on this route for about 8 months. My last general dr visit, he said i look really good and asked if i was on the mainstream or still "doing my own thing". After that he said that if i want scripts for anything to let him know and he'll write them. So far i dont need them but tbh I wouldnt mind not having the taste of liquid ldn in my mouth every night, so i might have him scrip the pill form eventually.
My wife says i sleep 100x better, she has spent years afraid to move because i would always "wake up". Now i just sleep.
They carry a bunch of stuff, shipped from india, no prescription.. I did antibiotics for a year from them as well. The last month or so I took the same anti's from wallgreens, I had concerns that what I had may not be the real stuff. The effects from the known meds, identical to the stuff I was taking. And I found afterwards that a vast majority of the meds we get from the pharmacies are actually made in india to start with :laugh:
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