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Hey Jack..Cojack wrote:Yes Jim...
i'm also very interested in how you're doing now...also...i too think B vits are iffy with me...tried b complex...then bought them all separately to eliminate the niacin....jury is still out....
Jim hasn't been around these parts in over a year. Ken and I cautioned him on NAG -you can read earlier in the thread for specifics. And Jim..if you're out there..check in!
happy new year!
dx dual jugular vein stenosis (CCSVI) 4/09
I have PPMS and have not progressed much. Granted my walking is limited to about 10-15 in sub 70 degree heat. Fatigue is my worst syptom. No diet or supplement has changed that. I think that has gotten worse over the years. I swim for exercise 3 x a week. I feel better afterwards but not really much more energy. I also do reflexology and reiki which has helped leg numbness and stability.
Here is my regimen:
LDN 4.5 mg daily
Copaxone 3 x week
Lion's mane daily 500 mg daily
Methenamine Hippurate 1 gm 2 x daily - keep urine clean and save kidney. Kidney disease is a common killer with MS
Minocycline 50 mg daily
spiralina pure hawaiian 500 mg 2 x daily
Magnesium 400 mg - 1-3 per day depending on how constipated I am
Just started a trial with Dr. Gundry's prebiotics. They have a 90 days money back guarantee so willing to try because I know my microbiome is very important and alot of our immune system is in our gut. So these prebiotics may help that.
We are all lab rats to an extent. the the NAG also helps my arthritis that i have in my knees. I was taking Glusosamine before I was diagnosed.
So best of luck with the NAG.
No luck with Alpha Lipoic and the other supplement usually taken in conjunction with it. No help with my fatigue.
Recently added NAD - Nicotinamide riboside 250 mg 2 x daily. look this up. Helps cells talk to each other.
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
I really am uncomfortable with the idea of NAG. It is what constitutes about 50% of a bacterial cell wall and helps strengthen of the bacteria by crosslinking. Penicillin is supposed to break down those cross linking bonds. https://en.wikipedia.org/wiki/Peptidoglycan
Bacteria can be inflammatory and often you can be primed by earlier experiences and cross infections. Inflammation is the last thing we need.
George Jelinek cautions against glucosamine without giving a reason because the epidemiological evidence points to it not producing positive outcomes.
In 2014 I was taking NAG and had suspended doing the things that I now religiously do. I stopped two chambers of my heart and lost the ability to walk. It has taken nearly three years to overcome that. To me, NAG is like a hand grenade with the pin out. If you have the wrong bacteria then adding NAG will be like going BOOM!
Should we have a prominent board about the supplements that don't work or could cause adverse effects for PWMS?
The first risk is it will end up like Monty Pythons argument sketch.
It might work if it's limited to a genuine adverse reaction and you can link that to the mechanism. Generally that will be beyond most peoples knowledge base. There are plenty of "favourite" things that people do that don't seem to work for someone else. That can be due to contraindications, specific intolerances, the response to fillers in supplements etc. The symptoms displayed can vary in intensity from one person to the next so the thing that seems to work for someone may be given false credit.
I think we are probably better swapping ideas as we go along than having a list that becomes set in stone. That might be what a supplements board becomes.