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CFS sufferer with on and off help with NR (re-posting from my intro page)

niagen nicotinamide riboside

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#1 immicow

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Posted 08 September 2020 - 10:32 AM


This was my intro. I am re-posting it in this page for appropriate answers.
 
I was diagnosed with ADHD few years ago. The cause of the ADHD symptoms was Chronic Fatigue Syndrome. I have tried several medications with nothing helping me completely.
 
Few months ago I tried Nicotinamide Riboside from amazon.in the Tru Niagen. It worked fantastic for a week and then went down. My symptoms returned and worsened as I went on. It made spacey, grumpy and tired. Went back to normal when I stopped it. 
 
I blamed it on the stock quality and ordered some more from amazon India from different resellers. Nope they didn't work at all. By suggestions from Chris Masterjohn I tried various methylation supplements to no good.
They didnt work as well.
 
May be the resellers in India are a problem so I tried ordering directly from Truniagen via a website called ubuy.com which buys things in US in your behalf and ships it to you. Truniagen doesn't sell in India directly.
I bought the stick packs this time and it worked. Fantastic. But again the everything went down hill in a couple of days. This time I refrigerated the supplement. I wonder if thats the problem. maybe the moisture ruins it.
 
When the NR working those few times when I take any other methyl supplement with it (like b12 tmg etc) it works fantastic. They dont work by themselves.
 
My suspicion is NR seems to be unstable. especially I am living in a hot and humid country and while shipping it probably looses potency. Indian resellers have it in their warehouse longer and its probably ruined by the time it reaches me.
After it looses its potency it works like niacin and so depleting methyl groups.
 
I don't think Chis Masterjohn is correct. His argument was very anecdotal. there is no proper evidence that methyl groups are depleted by NR.
 
Taking methyl supplements enhances the effects of NR but they are not essential.
 
I wish there is some third party sellers that have testing certificates for their NR.
 
Please advise I may be wrong. I am very desperate as this is the only thing that has truly helped me.
 
I do have some NMN from alive by nature and its a similar story as NR. Doesnt work. Make my symptoms worse.
 
May be you guys in US and Canada have better quality delivered to you. In India we don't have AC all the the time. We turn on AC only in the night. So the product is sitting in 80 -90 room temperature most times. Even the refrigeration usage is very minimal.
 
btw is trans-resveratrol essential?
is TMG from good source essential?

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#2 rodentman

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Posted 09 September 2020 - 08:32 PM

Yeah, I've had similar experiences.   I also have CFS.  I once left NMN in the car for a day, and it was quite hot, and afterwards, it was like poison.  I felt horrible after taking it.  If there is anyway you can refrigerate it, that would be a good idea.    D. Sinclair suggests refrigeration as well.  


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#3 immicow

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Posted 10 September 2020 - 12:08 PM

Do you still take NMN?

What brand is it and do you take it with something else?



#4 MikeDC

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Posted 10 September 2020 - 11:50 PM

Sounds like you have a methylation problem. NR is very stable. Try to use methylation supplements when you take NR. Don’t use high dose NR.
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#5 CharlieG

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Posted 08 October 2020 - 07:12 PM

I've heard NR isn't very stable, though I believe NMN is. Too bad you had the same experience with the NMN as I would have recommended that. You said you bought it from Alive By Nature - don't they sell other products that are in a gel liposomal sublingual form? I would try that one if it were me. I understand CFS pretty well and I too have been taking these supplements (I've tried NR) but I am now taking NMN from the same company as you. I have had really great results though. So, I am sorry you are having problems. You don't think it is a methylation issue? And, are you taking resveratrol as well? It can really amp up the energy, especially when taken with NMN. If possible - if you want to know if you have a methylation issue you could go get a whole blood histamine test done to see if you have an imbalance. I've done the test before myself. Besides that, you might want to look into other causes of your fatigue. Sometimes there is an underlying undiagnosed viral issue. And, sometimes taking supplements to support with that can really help, even if it isn't diagnosed yet. I sometimes take AHCC, which is a potent anti viral and I always tend to feel better and more energy when taking it. I hope your symptoms improve as I know it is extremely difficult to have chronic fatigue. People don't understand how hard it is. And, how is your sleep?


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#6 Hip

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Posted 10 October 2020 - 12:28 AM

It's common for ME/CFS patients to derive benefit from a supplement or drug, but for the benefits to vanish after a few weeks or months. It's as if the disease adapts to treatment you are taking.


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#7 immicow

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Posted 11 October 2020 - 08:56 AM

Thank you for your reply

Sleep is okay. I get deep sleep when I am on a anti-histamine. I do feel better when I try something that lowers histamine.

I am on SAM-e for past few weeks. It has really made some difference. I take B6 P5P, Zinc with some copper and Vitamin D.

These helps my concentration. But still tiredness is there. I cannot exert myself too much. I have to balance my activities.

I do have some NMN left I will try again soon.



#8 CharlieG

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Posted 15 October 2020 - 02:41 PM

Hip, that is so true. Thank you for sharing that. I really want to understand that more. Immicow, that is interesting about your supplements and histamine levels. Have you read Nutrient Power by William Walsh? You are taking a lot of the supplements he recommends for undermethylators. Sorry you are dealing with fatigue issues. I know how difficult it is.


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#9 immicow

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Posted 18 October 2020 - 04:03 PM

I did read the book. I came across a video of his on youtube. I first tried Choline Bitartate and the phosphatidyl choline and then methyl folate. They never work for me at all. I start getting irritable and rage like symptoms.

These supplements work like a miracle for many but in my case its very bad. I was suspecting things like lower amounts of minerals or other b vitamins. I went and bought every single one of them. But not use. 

I went around and finally gave sam-e a chance. It does take some time. You need to start at 200mg. The brand is also important I guess. I tried an Indian brand for last two days. Its from company called aiwo. My symptoms are coming back.

Doctors best is the one I was taking. You need to start at 200mg and go up. I am at 400mg now. You need atleast two weeks to see some difference.

 

With NR and NMN : I live in India. Stuff takes atleast a week or two to reach india when I order it from abroad(mostly USA). I feel like the product looses its stability. May be in future they will resolve the issue.

 

But now I am happy with SAM-e.



#10 CharlieG

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Posted 18 October 2020 - 07:22 PM

immicow, thanks for sharing all this. I met Dr. Walsh in Chicago a few years ago at a conference. He is inspiring. If you are an undermethylator, I thought you would want to try to avoid folates and I am not sure about choline. My family member has undermethylation issues also and had success with SamE, for depression years ago. He later ended up taking some St. John's Wort instead and had a lot of success with it but later weaned off of everything. He still takes B6 and zinc a few times a week. You are right about SamE as the product can degrade and you need to get a good brand. Sorry you're having problems getting things in time (in a way that the product doesn't get too impacted by weather and travel). That must be really frustrating. I think it's a good thing you are working so hard to fix your health. I hope it works out well. Just don't give up. 


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