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

[frozenborderline]

I agree that high doses of NAD in an IV are not necessarily needed. 250mg is enough for me to feel great a few days, I am hesitant to do any more than that (note: I have only done this 3 times).

DId it bring u significantly up the M.E./cfs unofficial function scale @Hip talks about? Severe , moderate, mild

 

[Hip]

Severe , moderate, mild

This is the scale in question: very severe, severe, moderate, mild, remission.

If a treatment can move you up by one level on the scale (eg, move you from severe to moderate), then that is a major result.

 

[Lieselotte]

@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.

 

[frozenborderline]

My doctors office has started offering nad+ infusions. I am curious about trying one. They do the small compounded doses and I think run at a responsible speed, but I’m still nervous that because I have been so affected by mold toxicity that I haven not dealt w yet, that nad + would rev up the motor too much. I heard one story about someone becoming bedridden because of nad+. Should I try the sublingual or nasal spray version first to see how I tolerate it? If I did do it, the purpose would Be to try it And also to get a boost before my mold sabbatical. My level of functioning is severely ill, bedridden albeit can be upright in wheelchairs for short periods (hence the doctor visit). I’m kinda itching to try it but don’t want to have long term negative effects.

 

[Learner1]

LIAS Research makes 25mg doses of NAD+. AlivebyNature makes 125mg doses. Both would allow you to try smaller doses sublingually.

When I get NAD+ by IV, it is given with folate, B12, B2, B6, B5, C, magnesium, MIC (methionine, inositol, choline), carnitine, selenium, and zinc, and followed by a bag of 3g glutathione and a little molybdenum. This supports methylation/detoxing, supports mitochondria, and acetyl CoA. NAD+ is still a form of niacin and can reverse methylation, so having thr methylarion support is important.

I wouldn't do more than 200mg by IV. It invariably makes me nauseous, speeds up my intestines whoch want to empty, and makes me feel warm. It must be dripped slowly. The feeling does not go away until I gwt the glutathione.

As for the mold/mycotoxins, glutathione is 9ne strategy that will help with that.

 

[frozenborderline]

I wouldn't do more than 200mg by IV. It invariably makes me nauseous, speeds up my intestines whoch want to empty, and makes me feel warm. It must be dripped slowly. The feeling does not go away until I gwt the glutathione.

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.

When I get NAD+ by IV, it is given with folate, B12, B2, B6, B5, C, magnesium, MIC (methionine, inositol, choline), carnitine, selenium, and zinc, and followed by a bag of 3g glutathione and a little molybdenum. This supports methylation/detoxing, supports mitochondria, and acetyl CoA. NAD+ is still a form of niacin and can reverse methylation, so having thr methylarion support is important

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

As for the mold/mycotoxins, glutathione is 9ne strategy that will help with that

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?

 

[frozenborderline]

Have you noticed any bad effects on a longer term time scale, or is it more just hard to tolerate in the moment??

 

[Learner1]

I think one of the sublingual versions woyld be just as useful in your case, especially since you dint eant to overdo it. The AlivebyNature product is fairly soft and could easily be cut into a smaller dose.

Have you noticed any bad effects on a longer term time scale, or is it more just hard to tolerate in the moment??

Its getting it into me by IV that's the miserable part. After its gotten in, its fine.

However, I have talked to a couple of mito experts who are concerned about long-term overuse possibly promoting cancer.

As I've mentioned, I am doing a lot of other things, and my dose is not large. The effect of the entire program has been to give me a more normal life where I can exercise regularly.

But, dealing with mold, viral, and bacterial infections, supporting my immune system, and supporting methylation, amino acids, antioxidants, and mitochondria have all been important pieces.

 

[Lieselotte]

@debored13 I think it would be good to start on the sublingual or nasal spray NAD just to be safe. It will help you in a subtle way while you move and get away from the mold. That should be your number 1 thing to do. You can always do the IV later.

I was actually listening to a Bulletproof podcast recently with a mold specialist who does the nasal NAD spray along with lipid therapy for his mold patients. https://blog.bulletproof.com/dr-andrew-heyman-557/

The IV experience is a real trip. The first time I got it done was at one of those med-spa places. The lady put some of the NAD straight into my tubing first so "I could feel it". Why the heck did she do that?? It's the worst feeling ever: like your whole body is on fire and being tasered and your organs cramping all over. But at a slow drip it is very tolerable for me - just a pounding heart along with a warm tingly feeling and a tiny bit of the squeezing innards feeling that @Learner1 talked about.

 

[junkcrap50]

Its getting it into me by IV that's the miserable part. After its gotten in, its fine.

The IV experience is a real trip. The first time I got it done was at one of those med-spa places. The lady put some of the NAD straight into my tubing first so "I could feel it". Why the heck did she do that?? It's the worst feeling ever: like your whole body is on fire and being tasered and your organs cramping all over.

Can confirm. The dripping of the NAD+ and its speed is miserable. I did mine at home and had to go very slowly, like 12 drops/minute. But as soon as the IV bag is empty, it's over.

 

[frozenborderline]

So people seem to have had pretty decent results w/ sublingual NAD+? Of the alivebynature products which should I go w/? Some form of NMN? I tried niagen/nicotinamide riboside w zero response even at high doses but maybe nmn is a lot better precursor? Or sublingual nad+ in liquid form, solid form, or intranasal?

 

[frozenborderline]

I have alivebynature powder for sublingual. Does it also help w gut motility? WHats a good sublingual dose?

 

[Lieselotte]

I have alivebynature powder for sublingual. Does it also help w gut motility? WHats a good sublingual dose?

I have ABN sublingual powder too. They give you a little scoop with it. I take one scoop in the morning and when I remember one scoop in the afternoon. If you've never taken NAD powder it might be best to start with just one dose and see how it goes.

 

[Lieselotte]

I haven't noticed any gut motility effects. The effect of the powder is really subtle for me - just a tiny bit of energy support.

 

[Hoosierfans]

I think one of the sublingual versions woyld be just as useful in your case, especially since you dint eant to overdo it. The AlivebyNature product is fairly soft and could easily be cut into a smaller dose.

Its getting it into me by IV that's the miserable part. After its gotten in, its fine.

However, I have talked to a couple of mito experts who are concerned about long-term overuse possibly promoting cancer.

As I've mentioned, I am doing a lot of other things, and my dose is not large. The effect of the entire program has been to give me a more normal life where I can exercise regularly.

But, dealing with mold, viral, and bacterial infections, supporting my immune system, and supporting methylation, amino acids, antioxidants, and mitochondria have all been important pieces.

@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!

 

[Learner1]

If you want to see if NAD+ will work on you, befote trying a more expensive infusion, I'd get some NAD+ from either Alive by Nature or LIAS Research and see how they work. You might try a relatively small dose, like 25-62mg and see what they do.

From the articles I've read too high an NADH/NAD+ ratio is bad. Therefore, using NAD+ may correct the ratio and taking NADH may worsen it. This is my theory, don't know for sure.

The military high dose NAD+ protocol was developed to get people over the hump of getting off additive substances. That's not us, so if you're doctor suggests something like that with 500-1500mg infusions over a few days, I believe it would be a mistake.

For one thing, IV NAD+ is a difficult IV. I get 200mg once every 7-10 days, along with a mito cocktail of other mito nutrients, and we have had to add in the NAD+ at the end for me to tolerate it. When the NAD+ is added, it hypes up my system, particularly my digestive system, and I get nauseous and my bowels want to empty pretty soon. Limiting the timeframe this is going on is desirable, and a lot of the time, I need benadryl to keep from vomiting. We have to slow the drip rate down also, which reducrs the nausea. So, I cannot imagine going to 2-5 times as much in a session - I just couldn't tolerate it.

Even with these difficult symptoms, which pass quickly after the NAD+ is done, and I get glutathione as a follow-up, the effect of the NAD+ IV is much better than the oral. From the beginning, it made me feel like an almost normal person for about 36 hours. Over time, doing the IV NAD+ every 7-10 days, with 125mg sublingual NMN or NAD+ on the days in between, has greatly helped to normalize my life.

Another reason I wouldn't go higher is I'm a cancer survivor and too much NAD may feed cancer if its lurking about. I think the biohackers doing more are running a big risk., so I try to take just enough to help.

NMN made me jittery at first but these days, it works interchangeably with NAD+. I figure gorcing my body to convert NMN to NAD+ is useful rather than just giving the end ingredient.

One other thing you might ask your doctor about is doing AMP IVs. My doctor said hes seen them be very helpful for patients but wasn't able to source it. (Adenosine Monophosphate is a precursor of Adenosine Triphosphate, ATP, our body's energy currency.)

Why is your doctor suggesting NAD+? Does he/she suspect toxicity or just think you lack enough? Have you looked into peroxynitrites, arsenic toxicity, or mold toxicity? Or repairing. damaged membrsnes with NT Factor or phospatidyl choline? Have you done a MitoSwab test, or taken carnitine, B2, MitoQ PQQ, B vitamins or BCAAs? I think NAD is best as part of a comprehensive program - it's not a magic bullet though it can dramatically help over time.

 

[IThinkImTurningJapanese]

Another reason I wouldn't go higher is I'm a cancer survivor and too much NAD may feed cancer if its lurking about.

Do you have some research that supports this?

I ask because this statement is counterintuitive. NAD+ levels are higher in younger people, those who experience lower incidences of cancer.

 

[Learner1]

Do you have some research that supports this?

I ask because this statement is counterintuitive. NAD+ levels are higher in younger people, those who experience lower incidences of cancer.

Oh, young people get cancer too. Some even die from it, just like adults. And, one of the newer strategies of fighting cancer is to stimulate the immune system to fight it, particularly with NK cells, which are typically lower in function in ME/CFS patients, possibly making us more vulnerable to cancer if it develops.

https://www.cell.com/cell-metabolism/fulltext/S1550-4131(16)30228-5

https://www.scitechnol.com/peer-rev...atment-pros-and-cons-zR4d.php?article_id=5285

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5568696/

https://siteman.wustl.edu/pathway-linked-slower-aging-also-fuels-brain-cancer/

https://www.worldhealth.net/news/cancer-research-pointing-unknowns-about-anti-aging-supplements/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3365962/

All of this is complex and there are no black and white answers. My treatment goals are around normalizing function in an integrated fashion, not hitting one specific function with sledgehammer which could lead to unwanted results. I look at it as not adding too much gas to a broken engine - you need to work on fixing the engine before cranking up the speed...

Also, it would be wise to remember that there is a lot of money to be made selling anti-aging supplements. The people selling them are more prone to brag about the benefits than warn us of potential risks. The above articles show enough about the complexity of all of this to make my doctors and me cautious. And, having done two 2 month high dose trials of the highly touted nicotinamide riboside with absolutely no results, I am very aware these substances don't have identical effects in everyone.

 

[Hoosierfans]

If you want to see if NAD+ will work on you, befote trying a more expensive infusion, I'd get some NAD+ from either Alive by Nature or LIAS Research and see how they work. You might try a relatively small dose, like 25-62mg and see what they do.

From the articles I've read too high an NADH/NAD+ ratio is bad. Therefore, using NAD+ may correct the ratio and taking NADH may worsen it. This is my theory, don't know for sure.

The military high dose NAD+ protocol was developed to get people over the hump of getting off additive substances. That's not us, so if you're doctor suggests something like that with 500-1500mg infusions over a few days, I believe it would be a mistake.

For one thing, IV NAD+ is a difficult IV. I get 200mg once every 7-10 days, along with a mito cocktail of other mito nutrients, and we have had to add in the NAD+ at the end for me to tolerate it. When the NAD+ is added, it hypes up my system, particularly my digestive system, and I get nauseous and my bowels want to empty pretty soon. Limiting the timeframe this is going on is desirable, and a lot of the time, I need benadryl to keep from vomiting. We have to slow the drip rate down also, which reducrs the nausea. So, I cannot imagine going to 2-5 times as much in a session - I just couldn't tolerate it.

Even with these difficult symptoms, which pass quickly after the NAD+ is done, and I get glutathione as a follow-up, the effect of the NAD+ IV is much better than the oral. From the beginning, it made me feel like an almost normal person for about 36 hours. Over time, doing the IV NAD+ every 7-10 days, with 125mg sublingual NMN or NAD+ on the days in between, has greatly helped to normalize my life.

Another reason I wouldn't go higher is I'm a cancer survivor and too much NAD may feed cancer if its lurking about. I think the biohackers doing more are running a big risk., so I try to take just enough to help.

NMN made me jittery at first but these days, it works interchangeably with NAD+. I figure gorcing my body to convert NMN to NAD+ is useful rather than just giving the end ingredient.

One other thing you might ask your doctor about is doing AMP IVs. My doctor said hes seen them be very helpful for patients but wasn't able to source it. (Adenosine Monophosphate is a precursor of Adenosine Triphosphate, ATP, our body's energy currency.)

Why is your doctor suggesting NAD+? Does he/she suspect toxicity or just think you lack enough? Have you looked into peroxynitrites, arsenic toxicity, or mold toxicity? Or repairing. damaged membrsnes with NT Factor or phospatidyl choline? Have you done a MitoSwab test, or taken carnitine, B2, MitoQ PQQ, B vitamins or BCAAs? I think NAD is best as part of a comprehensive program - it's not a magic bullet though it can dramatically help over time.

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?

 

[Hoosierfans]

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.