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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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7 Day NAD+ Infusions (Severe ME/CFS Recovery, Neurological / Mitochondrial / Genetic Repair) + POLL

What is your experience with NAD+ ?

  • I had the full NAD+ IV protocol and benefitted (7+ infusions)

    Votes: 1 1.0%
  • I had the full NAD+ IV protocol and did not benfit (7+ infusions)

    Votes: 1 1.0%
  • I had 1-6 NAD+ IVs and benefitted

    Votes: 7 6.9%
  • I had 1-6 NAD+ IVs and did not benefit

    Votes: 4 3.9%
  • I tried and benefited from nasal NAD+

    Votes: 0 0.0%
  • I tried but did not benefit from nasal NAD+

    Votes: 1 1.0%
  • I tried and benefited from oral NAD+

    Votes: 6 5.9%
  • I tried but did not benefit from oral NAD+

    Votes: 17 16.7%
  • I tried and benefited from transdermal NAD+ (patch)

    Votes: 0 0.0%
  • I tried but did not benefit from transdermal NAD+ (patch)

    Votes: 1 1.0%
  • I have not tried NAD+ but have benefited from a NAD+ precursor (NIAGEN, Niacin, B3, NADH etc)

    Votes: 12 11.8%
  • I have not tried NAD+ and have not benefited from a NAD+ precursor (NIAGEN, Niacin, B3, NADH etc)

    Votes: 14 13.7%
  • I have never tried any form of NAD+ or NAD+ precursor

    Votes: 38 37.3%

  • Total voters
    102

mitoMAN

Senior Member
Messages
625
Location
Germany/Austria
High pathogenic lactate buildup mostly comes from mitochondrial dysfunction. However there can be 1000 reasons for the dysfunction. NAD+, Other Methylation Factors, Membrane Potential etc etc etc.

-Sidenote:
Does anyone of you have high lactate without excercise ? Resting lactate?
Mine is only extraordinary elevated when doing low Watt cycling. Resting lactate is fine.
 

junkcrap50

Senior Member
Messages
1,330
Very interesting. Wonder how if correlated to this, which says high lactate can be from thiamine deficiency, among other things...
Yes. Dr. Lonsdale wrote a great book about thiamine deficiency. Unfortunately, there is no reliable way to test for low thiamine or thiamine deficiency. Serum levels are very reflective of true thiamine status. The test that Dr. Lonsdale used to thiamine deficiency, Erythrocyte Transketolase Test (TKA), is not done anymore. More info about that test here: http://www.hormonesmatter.com/thiamine-deficiency-testing-understanding-labs/
(Actually, that links lists 2 labs BioLab in the UK and HDRI (in US & Europe) that supposedly do the Transketolase thiamine test. I must have discounted those labs at the time since they were outside the US. They both still offer this test! For HDRI, it is listed under "Enzymes" as "ETKA".)

High pathogenic lactate buildup mostly comes from mitochondrial dysfunction. However there can be 1000 reasons for the dysfunction. NAD+, Other Methylation Factors, Membrane Potential etc etc etc.
Can also be due to D-Lactate producing bacterial overgrowth, just FYI. Well, I do have a suspected lactate problem, but my mitochondrial testing (Organic Acids test) seemed to be relatively normal. I will be making a big post about my case / problem soon.

-Sidenote:
Does anyone of you have high lactate without excercise ? Resting lactate?
Mine is only extraordinary elevated when doing low Watt cycling. Resting lactate is fine.
Do you mean high lactate "as seen in lab tests" or just in general? How did you test your lactate levels while bicycling/exercising?

I have normal lactate - when resting (haven't had blood draw while exercising). I feel significant lactic acid buildup / burning doing light exercise (combing hair, putting pants on, climbing stairs, etc.). But if I were to do 15 bicep curls with weights, I get no abnormal lactic acid build up (Only get it at the last few reps like normal people) and do not have similar symptoms like when climbing stairs.
 
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mitoMAN

Senior Member
Messages
625
Location
Germany/Austria
Do you mean high lactate "as seen in lab tests" or just in general? How did you test your lactate levels while bicycling/exercising?
I have normal lactate - when resting (haven't had blood draw while exercising). I feel significant lactic acid buildup / burning doing light exercise (combing hair, putting pants on, climbing stairs, etc.). But if I were to do 15 bicept curls with weights, I get no abnormal lactic acid build up (Only get it at the last few reps) and do not have similar symptoms like when climbing stairs.
It is a very easy test on cycling bike checking your heart rate, blood pressure and lactate every 2-5 minutes.
The lactate testing is done with a small device similar too blood sugar testing. Very easy.

Cost me 150€ and revealed that I have higher lactate than the usual 70 year old on 75 Watt cycling lol. Even tho I have lots of muscles.. So yeah that was a dead giveaway that I have a severe problem with muscle mitochondria.

Maybe google for something like lactatecycling electrocardiogram


This was the test I did at Professor Reiterer in Austria Vienna.:
http://www.prof-reiterer.at/unters1.htm
ErgoTestMath.JPG
 

junkcrap50

Senior Member
Messages
1,330
It is a very easy test on cycling bike checking your heart rate, blood pressure and lactate every 2-5 minutes.
The lactate testing is done with a small device similar too blood sugar testing. Very easy.

Cost me 150€ and revealed that I have higher lactate than the usual 70 year old on 75 Watt cycling lol. Even tho I have lots of muscles.. So yeah that was a dead giveaway that I have a severe problem with muscle mitochondria.

Maybe google for something like lactatecycling electrocardiogram
Thank you. I did not know they did a test like that. I have done a "Cardio-Pulmonary Exercise Test" (basically the test you did, I think) but they did not track or measure lactate levels throughout the test. (I wish they did!) They did conclude that I had abnormally low anaerobic threshold, which could be reached just by moderate walking. They calculated the anaerobic threshold by looking at O2 and CO2 consumption/production and plotting it's chart.

EDIT: Should add that "anaerobic threshold," "lactate threshold," and "aerobic threshold" are all different data points, despite frequently being conflated as the same.
 
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mitoMAN

Senior Member
Messages
625
Location
Germany/Austria
Thank you. I did not know they did a test like that. I have done a "Cardio-Pulmonary Exercise Test" (basically the test you did, I think) but they did not track or measure lactate levels throughout the test. (I wish they did!) They did conclude that I had abnormally low anaerobic threshold, which could be reached just by moderate walking. They calculated the anaerobic threshold by looking at O2 and CO2 consumption/production and plotting it's chart.
without lactate, my results would have been: perfectly healthy. I did two of these before without lactate. Totally waste.
I was sweating and having immense pain but that was not reflected by heartrate. Only by lactate. So I would highly suggest to do this test.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
Thank you. I did not know they did a test like that. I have done a "Cardio-Pulmonary Exercise Test" (basically the test you did, I think) but they did not track or measure lactate levels throughout the test. (I wish they did!) They did conclude that I had abnormally low anaerobic threshold, which could be reached just by moderate walking. They calculated the anaerobic threshold by looking at O2 and CO2 consumption/production and plotting it's chart.

EDIT: Should add that "anaerobic threshold," "lactate threshold," and "aerobic threshold" are all different data points, despite frequently being conflated as the same.
I did metabolic testing, which showed I burned glucose when I should have been burning fat, contributing to my intolerance of aerobic exercise as I blow through my glycogen stores too fast. A but different than an anaeribic threshold, I think.
 

pattismith

Senior Member
Messages
3,931
I started Nicotinamide Riboside 300 mg PO and got immediate energy boost (I also take corticosteroids).

I will see how it goes on a longer basis.

Update on my Nicotinamide Riboside trial...I had to stop it after some weeks.

Although it was very helpful at the begining, after a few weeks I started to feel increasing pain in my muscles, and then suddenly I had burning on urination and found Calcium Oxalate Monohydrate crystals in it...

My diet hadn't change so I wonder if NR played a role in my urine crystals. NAD+ is a cofactor in oxalate synthesis, so it may be.
My diet was high in oxalate. It was not intended but the food that I can tolerate are all high in oxalates... I have to change again the way I am eating...
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
Update on my Nicotinamide Riboside trial...I had to stop it after some weeks.

Although it was very helpful at the begining, after a few weeks I started to feel increasing pain in my muscles, and then suddenly I had burning on urination and found Calcium Oxalate Monohydrate crystals in it...

My diet hadn't change so I wonder if NR played a role in my urine crystals. NAD+ is a cofactor in oxalate synthesis, so it may be.
My diet was high in oxalate. It was not intended but the food that I can tolerate are all high in oxalates... I have to change again the way I am eating...
I don't doubt that calcium oxalate crystals caused you pain, especially if you are on a high oxalate diet. That is not fun.:eek:

Oxalates are an insidious toxin that will be absorbed unless you try to block them, especially if you lack oxalobacter formigenes and the more minor oxalate degrading bacteria in your microniome, which happens if you've been on antibiotics and certain other pharmaceuticals. Or if you have AGXT or a few other gene mutations.

They can also bind other minerals and make you deficient, causing all kinds of problems, including osteoporosis. They can firm crystals and cause pain in tissues and joints, and damage mitochondria, causing oxidative stress.

As they're is no probiotic to help return microbiome to dealing with oxalates as yet, reducing intake, taking calcium, magnesium citrate, lemon juice water, and/or garcinia cambogia 30 minutes before ingesting oxalate foods (many vegetables and fruits, nuts, and legumes) and keeping B6 level replete, or oxalates are absorbed and sulfur is depleted through SAT1, not a good thing.

It is highly doubtful NR or NAD+ is causing an oxalate issue other than speeding up your metabolism.

Sounds like a delicate dance...best wishes in finding a good balance.:hug:
 

junkcrap50

Senior Member
Messages
1,330
Although it was very helpful at the begining, after a few weeks I started to feel increasing pain in my muscles, and then suddenly I had burning on urination and found Calcium Oxalate Monohydrate crystals in it...
Oxalates can cause muscle pain? What test is used for oxalates? The organic acids test evaluates it?
 

gbells

Improved ME from 2 to 6
Messages
1,491
Location
Alexandria, VA USA
The poll is interesting. The main energy block in ME from epstein barr is that it inhibits aerobic respiration so cell energy (ATP) production decreases by 90% because it is stuck with glycolysis which is anaerobic. We are essentially turned into anaerobic bacteria energy wise. You can't run a brain and body well without oxygen (Kreb's cycle) but our body does what it can to keep us alive.

NAD no longer needs to be infused as it can be taken as nicotinamide riboside however it does not restore aerobic respiration. It probably has some small benefit in adults as we need it due to our age. I take it daily at age 50 in small doses (100 mg).
 
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Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
The poll is interesting. The main energy block in ME from epstein barr is that it inhibits aerobic respiration so cell energy production decreases by 90% because it is stuck with glycolysis which is anaerobic. We are essentially turned into anaerobic bacteria energy wise. You can't run a brain and body well without oxygen (Kreb's cycle) but our body does what it can to keep us alive.

NAD no longer needs to be infused as it can be taken as nicotinamide riboside however it does not restore aerobic respiration. It probably has some small benefit in adults as we need it due to our age. I take it daily at age 50 in small doses (100 mg).
Nicotinamide riboside does not work on everyone. I have done two two month trials of high dose nicotinamide riboside And it had absolutely no effect on me. NAD+, NADH, and NMN all work great. However, the effects of NAD+ infused at the same dose as taken sublingually are much greater. It goes directly into the bloodstream and it has a very intense effect that lasts about 36 hours, where the same dose of it orally or sublingually is more subtle.
 

gbells

Improved ME from 2 to 6
Messages
1,491
Location
Alexandria, VA USA
ME patients should be very low in NAD because it is generated only in the Kreb's cycle. Because NAD is used for DNA repair this predisposes to genetic mutations and cancer. Even though it is not an effective energy booster due to the ATP shortage, it is a good idea to supplement it (and live a low carcinogen lifestyle) to lower the cancer risk.

https://www.aboutnad.com/perspectiv...een-nad-and-your-cells-innate-immune-response

https://www.wikiwand.com/en/Citric_acid_cycle#/Interactive_pathway_map

https://www.wikiwand.com/en/Glycolysis
 

gbells

Improved ME from 2 to 6
Messages
1,491
Location
Alexandria, VA USA
NAD is also a cofactor for many reactions. More is not better. Too much can promote cancer if mutated cells happen to be lurking. Too little can also promote cancer by reducing ability of cells yo repair themselves. There's a happy place where it provides enough energy support without going overboard.

https://www.scitechnol.com/peer-review/nad-in-cancer-prevention-and-treatment-pros-and-cons-zR4d.php?article_id=5285#:~:text=NAD+ depletion with age may,due to impaired genomic stability.

I never said overdo it.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
I never said overdo it.
No, but you said "It is a good idea to supplement it to lower the cancer risk."

This is not true for everyone, and can be dangerous for some. As I pointed out, with the article I posted, and which I have seen in other scientific journal articles, is that it can indeed promote cancer as well as help avoid it. It depends on the person, and the situation, And just because one has ME/CFS does not mean one is a generic widget and will respond exactly the same way as another patient to the same supplement.
 

gbells

Improved ME from 2 to 6
Messages
1,491
Location
Alexandria, VA USA
No, but you said "It is a good idea to supplement it to lower the cancer risk."

This is not true for everyone, and can be dangerous for some. As I pointed out, with the article I posted, and which I have seen in other scientific journal articles, is that it can indeed promote cancer as well as help avoid it.

The research shows that as we age we lose the ability to make NAD as we age and even worse with chronic viral infections. So if NAD is needed to repair DNA then a low level obviously blocks DNA repair and predisposes people to cancer mutations so this is the rationale behind my statement. The trick is how do we get the level right? My solution is to use neurofeedback (similar to intuitive eating) and let appetite control it. I have been doing this for six years and tested it against blood tests for other nutrients (vitamin D3) and it works great for me as a 50 year old and is endorsed by dieticians.
 
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junkcrap50

Senior Member
Messages
1,330
I've been searching online for a couple days for "Injectable NADH" (not NAD or NAD+). And I don't think it's available anywhere. Which is strange, because it has / had been used in clinics by IV for Parkinson patients. Now, NAD+ is very popular and trendy, so that's all anyone has. You have to order NADH like @mitoMAN from China/Alibaba and then reconstitute and inject the non-sterile powder yourself.

Does any one have any leads on NADH?

I've only found Enada NADH and sublingual NADH in 10-20mg dosages. Interested because Mitoman reports better results with NADH. Also, supposedly (can't find the papers) NADH can enter cells more easily, whereas NAD+ cannot. Also, this thread shows that NADH increases ATP output whereas NAD+ did not.
 

gbells

Improved ME from 2 to 6
Messages
1,491
Location
Alexandria, VA USA
Nobody bothers with injections for NAD because nicotinamide riboside is orally absorbable and much cheaper. It is a must have anti-aging supplement.