I'm making myself a lab rat for n-acetylglucosamine

Tell us what you are using to treat your MS-- and how you are doing.
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Cojack
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Come in Jim

Post by Cojack » Mon Jan 05, 2009 10:57 am

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....

thanks,

cojack

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cheerleader
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Re: Come in Jim

Post by cheerleader » Mon Jan 05, 2009 11:42 am

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....

thanks,

cojack
Hey Jack..
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!
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com

crwriter
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Re: I'm making myself a lab rat for n-acetylglucosamine

Post by crwriter » Thu May 24, 2012 4:09 pm

I have been taking 1,000 mgs of NAG since last June and went to neuro today. Looks like my MS is still active.

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Re: I'm making myself a lab rat for n-acetylglucosamine

Post by Nenebird54 » Sun Oct 29, 2017 7:46 am

I have been taking NAG since 2009. Dx in 2008.

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
Ampyra
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.

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jimmylegs
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Re: I'm making myself a lab rat for n-acetylglucosamine

Post by jimmylegs » Sun Oct 29, 2017 8:10 am

what's your serum ferritin level?
take control of your own health
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!

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Re: I'm making myself a lab rat for n-acetylglucosamine

Post by Scott1 » Sun Oct 29, 2017 5:00 pm

Hi,

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!
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Re: I'm making myself a lab rat for n-acetylglucosamine

Post by Jaded » Thu Oct 25, 2018 4:26 am

Oh that's interesting about glucosamine Scott1

Should we have a prominent board about the supplements that don't work or could cause adverse effects for PWMS?

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Re: I'm making myself a lab rat for n-acetylglucosamine

Post by Scott1 » Thu Oct 25, 2018 1:42 pm

Hi,

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.

Regards,

Jaded
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Re: I'm making myself a lab rat for n-acetylglucosamine

Post by Jaded » Fri Oct 26, 2018 5:56 am

Good point well made Scott1

Nenebird54
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Re: I'm making myself a lab rat for n-acetylglucosamine

Post by Nenebird54 » Fri Nov 16, 2018 5:26 pm

I have been taking this for about 8 years. I take capsule form, bought on Amazon. Quit taking for about 4 months, my ataxia, spasticity and walking were all negatively affected. So back on.

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Re: I'm making myself a lab rat for n-acetylglucosamine

Post by Labrat2 » Wed Jan 09, 2019 10:31 am

I have also started taking Glucosamine (Sulfate) for this, though small amounts. It's been five weeks. Not much change. I think it's all about Sulfur, and it takes a couple of months or more of daily additions in full absorption mode (which is not large) to be able to build up a high enough level to fix things, because Sulfur is present in every cure, although Sulfur is everywhere, so this theory could be totally wrong. I may need to switch to NAG if this Sulfur idea continues to not work out.

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Re: I'm making myself a lab rat for n-acetylglucosamine

Post by Labrat2 » Thu Feb 07, 2019 8:28 am

It's been two months. Not working that well for MS. It's not as bad, but not back to normal at all. The sulfur works great for other stuff, though. The minor skin cancer, which has been a steady and unresolveable problem for years, has almost suddenly vanished without a trace. My hairbrush does not have the usual shedding. I also seem to have an allergy to something, so I switched to plain MSM and just use a small amount, about 100 mg of MSM. We'll see how it goes.

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Re: I'm making myself a lab rat for n-acetylglucosamine

Post by Scott1 » Thu Feb 07, 2019 2:31 pm

Hi,
I was a bit concerned when you were trying NAG. When I tried it, it coincided with an attack that nearly killed me. If you feel you are worsening, even though you have stopped it, don't hesitate to approach a neurologist. Just say you're having a relapse and need a bit of IV prednisone to get over it. NAG can feed gramm-positive bacteria by strengthening the cross links in their cell walls. No one should do that.
If you want sulphur, why don't you add a couple of boiled eggs to your breakfast?
I've tried MSM years ago and it did nothing for me. It's a trace element in a lot of foods, might be an antioxidant but there isn't overwhelming evidence of it.
Regards,

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Re: I'm making myself a lab rat for n-acetylglucosamine

Post by NHE » Thu Feb 07, 2019 11:36 pm

Scott1 wrote:
Thu Feb 07, 2019 2:31 pm
If you want sulphur, why don't you add a couple of boiled eggs to your breakfast?
One can also add garlic, onions, broccoli and watercress (and other foods) to their diet in order to get sulfur.

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Re: I'm making myself a lab rat for n-acetylglucosamine

Post by Labrat2 » Fri Feb 08, 2019 1:26 pm

Good ideas about the sulfur. I do eat eggs occasionally, but not every day. Same with the other food. Still, this persistent skin cancer did not disappear until I started using the MSM complex, and now just plain MSM since that allergic reaction (I think it's an allergy). Something fixed that skin cancer, and also I haven't fainted since, and weight has stopped sliding down, stabilized a little above 100 pounds, which is all nice. I'm guessing the MSM straightened out everything, but it might be something else. I was hoping that whatever it was/is would fix the MS, too, but so far, that hasn't been the case, and it may not be.

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