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 1.1%
  • I had the full NAD+ IV protocol and did not benfit (7+ infusions)

    Votes: 1 1.1%
  • I had 1-6 NAD+ IVs and benefitted

    Votes: 7 7.6%
  • I had 1-6 NAD+ IVs and did not benefit

    Votes: 3 3.3%
  • I tried and benefited from nasal NAD+

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

    Votes: 1 1.1%
  • I tried and benefited from oral NAD+

    Votes: 5 5.4%
  • I tried but did not benefit from oral NAD+

    Votes: 17 18.5%
  • I tried and benefited from transdermal NAD+ (patch)

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

    Votes: 1 1.1%
  • I have not tried NAD+ but have benefited from a NAD+ precursor (NIAGEN, Niacin, B3, NADH etc)

    Votes: 11 12.0%
  • I have not tried NAD+ and have not benefited from a NAD+ precursor (NIAGEN, Niacin, B3, NADH etc)

    Votes: 14 15.2%
  • I have never tried any form of NAD+ or NAD+ precursor

    Votes: 31 33.7%

  • Total voters
    92

Learner1

Senior Member
Messages
5,899
Likes
10,693
Location
Pacific Northwest
This all started w mono about 13 years ago so I have a doc now who wants me to try antivirals.
of course, we are going to give the antivirals a whirl first since I’ve never tried them.
Do you have a positive EBV PCR? Or titers suggesting chronic EBV? If so, I'd definitely do that, as EBV can hit your energy. I was on 1.8g Valcyte daily for 12 months, then 900mg for another 8, til I had 3 negative PCRs, and it greatly helped my energy and brain fog. The NAD+, which I started afterward, has improved on that.
He’s considering NAD as well for two reasons — my mitochondrial markers via a test a year or so ago are wonky
Which ones? Have you had a MitoSwab test? Has he tested carnitine, CoQ10, B vitamins, antioxidants and aminos?
So he’s thinking it might be worth a try to do some IVs and see if that helps my extreme dizziness, weird skin burning sensations, and lightheadedness.
Sounds like worth a try. Go easy, though. Slow drip rate, and 150-250mg. With a Myers.

Maybe look into PolyMVA IV as well. If you react badly to that, it would mean it's pulling toxins out of your mitos - we found I had arsenic toxicity that way, that was hitting my energy. Once the arsenic was gone, the PolyMVA gave me energy.

Do you take MitoQ? Though I need B2 and manganese (for Mn-SOD) more than CoQ10...

Have you also looked into peroxynitrites? An HDRI nitrotyrosine test would tell you if that's your problem.

And, if you have been on a lot of antibiotics, you might look into oxalates as the antibiotics wipe out oxalate degrading bacterial strains, and oxalates, which are sharp crystals can build up and damage mitos. High oxalic acid on a Great Plains OAT test would tell you if that's a problem. A Viome stool test can flag them, too.
is there a difference between NAD+ oral and NADH oral?
I could only find 20mg NADH and it was expensive. NAD+ is relatively cheaper, and as I mentioned, is better for improving the NAD+/NADH ratio if that's a problem, which it is for many. Anecdotally, some people do OK on NADH for awhile, then it stops helping - I think it's because of the ratio and not being able to recycle back to NAD+ fast enough.
 

Learner1

Senior Member
Messages
5,899
Likes
10,693
Location
Pacific Northwest
I should have said as well, yes I’ve tried PC IV (didn’t tolerate), PQQ I tolerate but it doesn’t do much, most B vitamins I don’t tolerate.

I’m not sure what BCAAs are.
PC helps repair membranes if you have peroxynitrite damage or high lipid peroxides. NT Factor is a better balance of phospholipids. Which product did you try? The lipid based or water based?

PQQ didn't do anything for me.

If you can't tolerate B vitamins, you may have toxicity built up that they mobilize. Or, you can't get it through the transsulfuration pathway as you don't have enough molybdenum (and/or B1). My IV protocol is B vitamins, minerals, and C, the NAD+ is added to that, then that's followed up with glutathione AND molybdenum, and then I may get PolyMVA or PC.

BCAAs are branched chain amino acids - isoleucine, leucine, and valine. Body builders use them, but so do mitochondria. I've been able to reverse (or avoid) PEM by taking 3-6 capsules of BCAAs + 500mg to 1g Setria glutathione.
 

Hoosierfans

Senior Member
Messages
253
Likes
585
@Lerner, thanks for all of this. I will try and digest all of it. I can’t recall all the tests I’ve had run over the years lol!

For PC, it was by IV. I had to do like baby doses, 1 ml - 2 ml.

I think we will start with the antivirals and then go from there and delve deeper. I had an awesome nutritionist / Lynch trained doc I worked with about 2 years ago, and she was the one that identified all the methylation issues, mitochondria deficiencies etc that I had. We worked together for about 9 months and honestly it was the most in-depth analysis I’d ever had done. That being said, 9 months of supplements that should have helped did nothing for me. I reacted to almost everything or it didn’t do anything for me. So we moved on to a mold / CIRS specialist and spend $40,000 last year cleaning out our home etc — again, no result and I kept getting sicker. So I’m kind of “burned out” on the supplement / methylation path as that hasn’t ever yielded results for me

My EBV IGG is above 600, and at last check my early antigen EBV was in the 40s (eek). We are rechecking that as its been about a year since that was ran (and we were focused on mold at the time). In about a week I’l start my first antivirals. Hopefully those will go well and if we peel back that layer, then if necessary I can re-start the path of methylation / detox. We are also trialing some medications for mast cell activation.

I have a lot of autonomic dysfunction, lightheadedness, am dizzy 24/7 and have this weird burning sensation all over my body and brain that no one can seem to pinpoint. The more I read here, the more I think that what is going on with me is that I’m having recurrent mono infections that are hitting my vagus nerve and maybe some of my peripheral nerves, and just causing tons of brain inflammation. Oddly enough, any supplement I try for brain inflammation doesn’t help (ugh) except doing keto which helped for like 2 weeks (felt like a rock star) and then it stopped helping.
 

Hoosierfans

Senior Member
Messages
253
Likes
585
So here was my OAT test a year ago....yes it shows the oxalate issue you mentioned. But my doc at the time said that it was due to yeast overgrowth (vs antibiotic use — although I guess they go hand in hand!). I’ve tried antifungals and they don’t help....so is there an “oxalate degrading bacteria” via a probiotic? Or what do you do for that?
 

Attachments

Learner1

Senior Member
Messages
5,899
Likes
10,693
Location
Pacific Northwest
@Lerner, thanks for all of this. I will try and digest all of it. I can’t recall all the tests I’ve had run over the years lol!

For PC, it was by IV. I had to do like baby doses, 1 ml - 2 ml.
From what I gather in talkingbyo the docs, the form matters for some patients. Was it derived from soy? sunflower? And was it water or lipid based. Perhaps another product woukd be better.
I think we will start with the antivirals and then go from there and delve deeper. I had an awesome nutritionist / Lynch trained doc I worked with about 2 years ago, and she was the one that identified all the methylation issues, mitochondria deficiencies etc that I had. We worked together for about 9 months and honestly it was the most in-depth analysis I’d ever had done. That being said, 9 months of supplements that should have helped did nothing for me. I reacted to almost everything or it didn’t do anything for me.
That's unfortunate. Excellent interventions can be a problem if not handled in the right order.

Given your OAT test results, I doubt you will get very far without certain supplements.

However, you have several problems stacked up, and, having gone through many of the same issues I think you need to work thtiugh your lust a but differently.
So we moved on to a mold / CIRS specialist and spend $40,000 last year cleaning out our home etc — again, no result and I kept getting sicker. So I’m kind of “burned out” on the supplement / methylation path as that hasn’t ever yielded results for me
Did you do a NutrEval, or just the OAT? The problem with the OAT, is it doesnt give you a good picture of antioxidants, just C and glutathione.

Given your results, I wonder what your levels of ALA, A, and E are. I've found that oxalates deplete them. The whole antioxidant sysyem works together, so if you are depleted in 2 or 3, it's not good. And then even though you mobilize toxic stuff, you can't get it all the way out of you and it just redeposits.

Methylation feeds glutathione, and a key nutrient needed throughout the process is B6. Your B6 was extremely low, likely because of oxalates. I had to go up to 400mg a day to start gaining ground. I know it sounds ridiculous, but B6 is used in a litbof other places, like heme production and making cell membranes, so if you're short, everything comes to a screeching halt.

My EBV IGG is above 600, and at last check my early antigen EBV was in the 40s (eek). We are rechecking that as its been about a year since that was ran (and we were focused on mold at the time). In about a week I’l start my first antivirals.
You need a PCR, both just antibodies. Does your immune system work? Did they test immunoglobulins, with subclasses? I had to go on IVIG to get anywhere. Also, is it just EBV? What about HHV6, CMV, zoster, HSV1/2 or other infections? Many of us have 2 or 3 herpes family infections and need to be on something like high dose Valcyte to get anywhere. Others can get by with Valtrex or Famvir.
Hopefully those will go well and if we peel back that layer, then if necessary I can re-start the path of methylation / detox.
I'd look at being on at least B6 (P5P not pyridoxine) and B12 in the short tern, given your labs.
We are also trialing some medications for mast cell activation.
Good idea. We monitor Chromagranin A and prostaglandin D2. I did well with high dose cromolyn sodium, ketotifen and benadryl. I have most meds compounded due to allergies to fillers. My doc has some patients on Gleevec. Neuroprotek, quercetin and jetotifen are helpful too.
I have a lot of autonomic dysfunction, lightheadedness, am dizzy 24/7 and have this weird burning sensation all over my body and brain that no one can seem to pinpoint.
Severe B12 deficiency? B6 deficiency? Some weird autoantibodies? Infection in yiur nervous system? Mitos?
The more I read here, the more I think that what is going on with me is that I’m having recurrent mono infections that are hitting my vagus nerve and maybe some of my peripheral nerves, and just causing tons of brain inflammation. Oddly enough, any supplement I try for brain inflammation doesn’t help (ugh) except doing keto which helped for like 2 weeks (felt like a rock star) and then it stopped helping.
I take up to 8g a day of Designs for Health CurcumEvail and 4g Thorne boswellia a day fir brain inflammation side effects of IVIG. Benadryl helos, too. Last ditch, as a mast cell stabilizer only, might be a benzo. Or dexamethasone.


All this said, oxalates are a driver of all if the above. Most doctors are woefully ignorant. They provoke fungal problems - lower oxalates and fungus improves. They sap antioxidants and B6 and create lipid peroxides and damage membranes. They are sharp crystals that cause pain.

The answers are not pleasant. A probiotic and enzyme are in clinical trials and will likely become expensive orphan drugs. In the meantime, a low oxalate diet and taking calcium or magnesium citrate with every meal, along with a probiotic like VSL #3 or Klaire Labs Therbiotic Complete is the answer. Best to do this first, should minimize candida. Oxalates also swap places with sulfur in the body - B6 is key to stopping this, as much as 5-7mg per kg of body weight.

Then, upping depleted antioxidants, like ALA, A and E will help info oxidative stress caused by oxalates.

You might look at low oxalate.info or the Trying Low Oxalates FB group for more info.

Once you've worked the oxalate problem for awhile, things should start to improve.
 

Hoosierfans

Senior Member
Messages
253
Likes
585
@Lerner1, we’ve kind of gone off topic lol! I’ll PM you to continue the discussion. Got some questions and appreciate your help!!!
 
Messages
3,300
Likes
6,804
Location
Japan
Oh, young people get cancer too. Some even die from it, just like adults.
Of course, however young people just simply experience cancer at a far lower rate than those who are older,

Cancer prevalence by age

We see that globally the majority of cancers occur in older populations. Approximately 70% of cancer cases occur in those aged over 50.
...and NAD+ levels are known to decline with age.

Plasma NAD+ Levels Decline Significantly with Age
Our data show a significant decline in the plasma levels of NAD+, NADP+, and other important metabolites such as nicotinic acid adenine dinucleotide (NAAD) with age.
Thanks for the links. That was interesting reading, but all I can find from it is speculation about the dangers of NAD precursor supplementation. Considering that exercise and caloric restriction increase NAD+ levels, both of which are well known to improve both health and longevity, it seems counter-intuitive to suggest a cancer link from NAD+ precursor supplementation.

NAD+ in Cancer Prevention and Treatment: Pros and Cons
NAD+ levels can be increased with exercise, caloric restriction and ingestion of NAD+ precursors and intermediates or could be increased by using PARP and CD 38 inhibitors.
 
Messages
19
Likes
51
My IV protocol is B vitamins, minerals, and C, the NAD+ is added to that, then that's followed up with glutathione AND molybdenum, and then I may get PolyMVA or PC.
I have tried NAD+ from ABN and this is the first thing that has given me more energy and I have tried numerous supplements! I would now like to try IVs and would be extremely grateful if you could post further details of your protocol, including quantities. I'm from Slovenia and bedridden and have not received any useful help from doctors during the 5 years of my me cfs.
 

Learner1

Senior Member
Messages
5,899
Likes
10,693
Location
Pacific Northwest
I have tried NAD+ from ABN and this is the first thing that has given me more energy and I have tried numerous supplements! I would now like to try IVs and would be extremely grateful if you could post further details of your protocol, including quantities. I'm from Slovenia and bedridden and have not received any useful help from doctors during the 5 years of my me cfs.
I will PM you.
 

Hopeful2021

Senior Member
Messages
262
Likes
274
@Lerner1, this is an older thread but my doc is suggesting NAD infusions for me. You mention several sublingual products...in the past I tried NADH and it really helped my dizziness for a few days but then it stopped working. Is there a difference between NADH and NAD+ (you mention a few products you utilize).

Thanks!
Hello.
I really had great results from NAD infusions.
 

Hopeful2021

Senior Member
Messages
262
Likes
274
I have tried NAD+ from ABN and this is the first thing that has given me more energy and I have tried numerous supplements! I would now like to try IVs and would be extremely grateful if you could post further details of your protocol, including quantities. I'm from Slovenia and bedridden and have not received any useful help from doctors during the 5 years of my me cfs.
Hello.
IV NAD
has been a game changer for me. I highly recommend it. I've been doing it for months now. The biggest thing I saw was that consecutive days of it matter. My doctors office is closed Monday. And I was too weak to get there or be driven in the beginning. Eventually I was able to arrange a 4 day. That was amazing. Soon after I did a 5 day consecutive. Then a few weeks later, I did two 5 day consecutive. There was significant and long lasting improvement that no one could have predicted.

I haven't needed a 5 day consecutive dose since then. Although a 3 day consecutive is plenty. And now I get Iv glutathione after. My brain is as good or better than it was before this disease. And I've also done sporadic hyperbaric oxygen for 3 years. And I am
Keto adaptated. So to me, this speaks volumes at how key IV NAD can be.
Probably other than Parkinson's patients, there aren't many ppl who have gotten over time as much NAD IV.

good luck in your healing journey.
If you do do it, could you please let me know? I'd be most interested. Thank you.
 

Hopeful2021

Senior Member
Messages
262
Likes
274
I believe the dose is 200 mg but I wonder if even that would be too much given my situation. However I’m also wondering if the risks of crashing are a little overhyped, I only heard one horror story about it.
I have a hard time keeping on top of all of this stuff and there’s no Way I’d get it iv, yet I do try and stay on top of it at least a littl, especially riboflavin as Chris masterjohn says methylation issues often caused by low riboflavin
I have intranasal glutathione, which is kind of expensive and I’m not sure it helps much or is bioavailable. I wonder if hydroxyb12 injections could serve a similar purpose of free radical scavenging. But it seems like lots of detox strategies for mold/mycotoxins don’t work well until one is out of the bad environment. SOme of the shoemaker protocol shows promise, but none of it seems worth doing without addressing the environment first, and I am now working w a biotoxin doctor about that. My concern is more that revving up the engine without even having been out of mold much would be a problem, but maybe I’m overthinking it as I’m just curious about trying the IV NAD+ once, at a moderate dose. I’m going to Be leaving the area for probably at least a month and maybe two, so I won’t necesaarily be able to access this treatment in an affordable manner (eg not through a scammy addiction clinic ) after the next week or so. Although from what people have posted it seems like sublingual or intranasal NAD+ is bioavailable and it’s worth trying this first anyway?
Hello. I'm not sure how to reply to all the comments.
About Chris Masterjohn and methylation. If you have an amino acid profile, you will know if you have enough methyl donors.
I've gotten months and months of NAD IV and I'm so thankful. I'm mainly carnivore ..., well relaxed carnivore. Sometimes some days of IV make me absolutely crave more meat. It's insane!!! But my doctor can also add more aminos.
I had heard about NAD IVs about 2 years ago in the biohacker community. And I just rolled my eyes. Didn't believe the "hype" and also heard Masterjohn and Attia pooey-hoo NAD a year a a half later. I wish I had had believed the hype. I do hypothesize that I wouldn't have had the worst severe ME episode that was absolutely frightening nonstop for 6-8 months.
I still get maintenance IV NAD
I now follow with glutathione IV.
Yes, it can make me feel like crap. That's just the nervous system reacting.
It also for me goes to the worst connective tissue and nerve spots. The flushing is an awful awful feeling. I can often be green and on the edge of my ability to take it. Then a few hours later....oh how life is Divine.
I'll be out walking on the beach or deep cleaning or just enjoying the company of others with my brain firing so well.
So to me, it's worth feeling awful for those 4-7 hours.
 

Hopeful2021

Senior Member
Messages
262
Likes
274
@debored13 It brings me up the scale about 0.5 -1 level, but only temporarily - I get a bump for ~3 days. Then it's back to 'normal'.

And you can easily waste the level bump. The first time I had the IV, I was so happy to have some energy that I did a little workout (1/4 of what I might have done before ME), and the next day had PEM. But, not as bad as the PEM would have been if I hadn't done the IV.

Since I haven't done it many times, I haven't seen a building effect.
Hello.
I found that it was consecutive days.
I was too weak to travel to a clinic that offers the ten day protocol.


It took me weeks to build up strength to get to 3 day consecutive IV NAD.
I'm now months into getting it at least 2x a week. But it was my first 4 day consecutive that gave me the strength to do my first 5 day consecutive. Then later I did two 5 day consecutives. That was amazing.
I'm now in maintenance mode. Sometimes I do a small dose like 300mg and others 1,000mg.

my protocol now adds glutathione IV dropped slower than the NAD.
We also experimented with the co-nutrients before the NAD and mixed in. Now we just decide on how I feel / what my progress has been.
About every 3 weeks, I do need to put in the time and often nauseated feeling to do a long 5 hour 1,000mg drip. Sometimes the next 1,000mg is so easy breezy.


my brain is back to before this disease.
Sorry for the bold. I keep turning it off and it won't. I'm new to forum and often can't find same post again. So didn't want to lose your comment. Thx
 

Hopeful2021

Senior Member
Messages
262
Likes
274
Thanks Lerner — I have a long and complicated treatment history and have treated for Lyme and mold and various other things but no doc has hit on exactly what is wrong w me. This all started w mono about 13 years ago so I have a doc now who wants me to try antivirals.

He’s considering NAD as well for two reasons — my mitochondrial markers via a test a year or so ago are wonky and, when I was at a clinic getting stem cells about 2 years ago they filled me w tons of stuff...of everything they gave me, the only thing I felt better from was subcutaneous NAD injections. So he’s thinking it might be worth a try to do some IVs and see if that helps my extreme dizziness, weird skin burning sensations, and lightheadedness.

of course, we are going to give the antivirals a whirl first since I’ve never tried them.

is there a difference between NAD+ oral and NADH oral?
Hello.
I like nasal spray NAD from a compounding pharmacy versus the one offered by Alive better than I like the subcutaneous shot of NAD. Although the shot will have a more powerful effect. My doctors office got the shot in after I tried it at another clinic in another city. Everyone of the staff got tired from their shot. Very relaxed. But then lots of energy later but seriously two of them almost needed a nap. LOL.
My doctor takes more than is recommend in the shot form and also takes Co-nutrients with it.
I sometimes give myself a shot at home and then just relax for 2-3 hours. Then my brain and nervous system are holding steady.
(I had severe episode of 6-8 months) it is what prompted me to try NAD IV. But because my doctors office was closed 3 days a week, I tried many options like sublingual and nasal spray and the shots and the patches.
hope this info is helpful