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

[junkcrap50]

@junkcrap50 The protocols you shared from those centers are mainly geared towards addicts who have different issues from us. The coal is to clean them out and make them feel good so they don't go back to using.

Rather than copying a protocol for someone else's unrelated medical problem, it would be wise to customize a protocol that serves the needs of a ME/CFS patient.

I agree. I was just posting them as it was information I had gathered, and I wanted to add to the knowledge base. I'm not recommending any of these protocols for anyone or for CFS particularly. Just adding info. It may help someone in the future if they read this thread.

ext, if you're comparing products, you need to ensure they're the same. NR is nicotinamide riboside, which did nothing for me - something is the matter with my pathways to process it. I believe Coenzyme 1 is a trade name for NADH, which also needs to be converted to NAD+.

I agree. The terms are screwed up, and you have to be careful with them. It's confusing for anyone who hasn't researched NAD+. Coenzyme 1 is NADH not NAD+, and NR & NMN are different too. This info came from the pharmacy and I'm not sure who made the protocol documents. But, I assume they meant NAD+, as that's the only form the pharmacy sells.

 

[Learner1]

Thanks for clarifying. It definitely should be individualized.

I also learned recently that last May, the FDA recommended pulling NAD+ and NADH 503a bulk coumpounds off the market. They used no info on ME/CFS in their evaluation. I have a couple of requests for info into the FDA, as they are looking at bsnning a long list of 503a and b compounds, including about 20 I've gotten regular benefit from.

I'll post more info on a new thread once I get it, but looks like those NAD+ clinics could go out of business unless the FDA understand the clinical benefit for these substances.

 

[junkcrap50]

Yep. I came across that issue when researching this back in February. Here are two links about the minutes from the FDA meeting in case you didn't come across them. This appears to be part of a larger crackdown on compounding pharmacies that I've heard about.

Summary Minutes:
https://www.fda.gov/downloads/Advis...acyCompoundingAdvisoryCommittee/UCM565932.pdf

Briefing Document (Full minutes?)
https://www.fda.gov/downloads/Advis...acyCompoundingAdvisoryCommittee/UCM553368.pdf

 

[Learner1]

Yes, it is. I'm trying to get more info on this from the FDA and will start a new thread on the FDA once I get the info, along with what we can do about it.

I'd hate to lose all the stuff we need to get well before we even find out they exist... I'm attaching some of the other substances they're reviewing...

 

[Sushi]

I'd hate to lose all the stuff we need to get well before we even find out they exist.

I've lost the two things that helped me most.

 

[Mary]

I'll post more info on a new thread once I get it, but looks like those NAD+ clinics could go out of business unless the FDA understand the clinical benefit for these substances.

This is so horrible - thanks so much @Learner1 for working on this!

@junkcrap50 - thanks for posting those links. I scanned the minutes and from what I can tell their supposed objection to NAD etc. is that it hasn't been studied enough - safety cannot be proven, although they did not find any evidence of toxicity.

This all makes me feel nauseous - The FDA approves horrific drugs that are very well documented to cause serious harm and even kill people without any qualms, but not something like NAD.

 

[Mary]

I've lost the two things that helped me most.

What are those two things?

 

[Sushi]

What are those two things?

Injected GcMAF and Nexavir. Together they gave me a big boost.

 

[Mary]

Injected GcMAF and Nexavir. Together they gave me a big boost.

@Sushi, I'm so sorry "they" made these unavailable, especially when they helped you so much - I hate our health care system! These are two things I would have liked to have tried. I had considered getting MAF from Dr. Enlander in New York to make the yogurt some say helps, but actually forgot about it until now -- I need to make lists, too many things to consider!

 

[Lieselotte]

Nice price! It seems like NAD+ is becoming more available in compounding pharmacies. A compounding pharmacy I like a lot, Tailor Made Compounding, just told me the other day that they just added NAD+ and will have it available in a week or two. Plus, the two pharmacies Jesse2233 and Learner1 are getting their NAD+ from.

@aquariusgirl, I made a post earlier listed 4 pharmacies that offer NAD+, according to what I could find online.

@Jesse2233 could you tell me the clinic you are going to where insurance gives you $40 NAD IVs? I live in the same area.

 

[Mary]

bump

 

[Learner1]

I'd be very surprised if insurance would cover NAD+. However, my insurance is paying claims for the saline compinent of the IVs to treat my POTS. The 200mg NAD+ adds another $60.

I recently found some cheaper alternatives. On my non-IV days, I have been experimenting with the sublingual 125mg NAD+ and 125mg NMN products from here:

https://alivebynature.com/

I've found the NMN makes me jittery at first, but if i take 25mg NAD+, it gets me overcthe jitters and is effective. The NAD+ product works great.

A little more expensive is this product, which i havent tried yet, but will:

https://nadovim.com/

The IV gives me a bigger bump for longer, but it is a difficult IV - makes my head ache, makes me nauseous and upsets my bowels, but I feel great afterwards. The sublinguals are a lot more subtle - no side effects.

 

[Lieselotte]

I've been taking 300mg of NAD+ in sublingual form (https://realnad.com/) and it's hard to say if it's doing anything.
I did have a hellish week towards the beginning of the month which didn't totally incapacitate me (I am still out of it but not as bad as last time I had such a week)...so maybe it helped?
Doesn't seem to have any building effect either. And I can take 2 of the 300mg tabs without really noticing a difference.
I'm going to try a 250mg NAD IV later this week. It's so expensive... I'll let y'all know how it goes.

 

[Learner1]

I've been taking 300mg of NAD+ in sublingual form (https://realnad.com/) and it's hard to say if it's doing anything.

I did have a hellish week towards the beginning of the month which didn't totally incapacitate me (I am still out of it but not as bad as last time I had such a week)...so maybe it helped?

Doesn't seem to have any building effect either.

The hype for the product above is incorrect. I can't figure out what the ingredients are from their site, but there are at least 3 other real NAD+ products on the market and you don't have to buy them from your doctor.

• The 125mg Alive by Nature product
  
• The 100mg Nadovim product, which they recommend taking 2 pills of
• The LIAS research product, which comes in 25 and 100mg lozenges

My experience with all 3 is they are interchangeable, if you take into account the dosage. I need about 150mg a day, and feel a rush of energy in about 15 minutes. It eventually wears off, I don't find it builds up or sticks around for more than a day.

All the other products are some form of niacin, or a precursor, like nicotinamide riboside (NR) or NMN or NADH. The NMN works for me, but the NR doesn't do anything, nor does niacinamide. The NADH comes in 20mg, so I can get through a couple of hours, but it's be expensive to take higher doses compared to the NAD+ or NMN.

According to my doctors, they all may reverse methylation, so you may need more MB12, etc. to compensate.

And I can take 2 of the 300mg tabs without really noticing a difference.

600mg is a truckload. If it's not working, I'd guess it's either not your problem, or the product isnt effective. I have tried some of these products side by side with friends and family, and some work on some people but not on others, or not at all.

I find that my fatigue is driven by different factors... I need thyroid and hydrocortisone and MB12 as a foundation, then the NAD+ for energy, and then glutathione and BCAAs to manage PEM. I've found I can guess wrong, and my tool of choice doesnt work, but there are some subtle differences to the character of the fatigue, so, with practice, its been easier to figure out what my body needs

I'm going to try a 250mg NAD IV later this week. It's so expensive... I'll let y'all know how it goes.

The IVs are a different animal. I get 200 mg NAD+ in an IV, along with carnitine, vitamin C, minerals, pantethine, and the other B's. The pharmacy insisted on teaching my doctor about it and gave safety instructions and warned about doing a slow drip speed.

It hits me like rocket fuel. I cannot tolerate anything faster thsn a very slow drip, or I get a headache, nausea, and my intestines emphatically want to empty. But, then I get another IV bag with glutathione and molybdenum, and from the moment it starts, I feel sharp and awake, and i feel like a normal person, full of energy, for about 36 hours.

The IV should tell you if it works for you. I have also heard very positive things about AMP, adenosine monophosphate, a precursor of ATP, which is available as an IV in Canada, but not the U.S.

 

[Lieselotte]

@Learner1 thanks for the NAD supplement alternatives. In my foggy brain state, I got the mg wrong on the doses I take. Usually I will take 150mg and sometimes double it to 300mg of which I don't feel a whole lot of difference btwn the two. I've heard about the strain on methylation, I need to stock up on my B12. I read somewhere that TMG works too. I tried niacinamide (500mg for a week) and it made my skin itch so bad everywhere so I had to stop that. Good thing I didn't have that reaction with NAD.

I did my NAD IV yesterday. What a trip. The nurse put a little of the NAD directly into the catheter (why on God's green earth would she do that?? I don't know). Anyway those few drops she put in were intense. It was like electricity through my body + burning everywhere + plus a clenching in the organs in my abdomen. My head was hot and dizzy and spinning. Holy shit what an experience. After that she put it in the bag and on a slow drip. After an hour we sped it up to a pretty fast drip and I was ok except my heart was beating harder than normal. After, she did a Myer's push.

Anyway, today I feel like a normal person. I was even able to eat normally! (I was so worn down the last two weeks that I didn't have the energy to digest much food). I would do the IV more often but that 250mg IV was $350 so that's out of the question.

One interesting thing about glutathione (you mentioned it making you feel better after the NAD)...I took it orally (liposomal) for a couple months when I wasn't sick and it made me mad. Anxiety, anger, feeling on edge. I had to stop.

 

[Learner1]

@Learner1 thanks for the NAD supplement alternatives. In my foggy brain state, I got the mg wrong on the doses I take. Usually I will take 150mg and sometimes double it to 300mg of which I don't feel a whole lot of difference btwn the two. I've heard about the strain on methylation, I need to stock up on my B12. I read somewhere that TMG works too. I tried niacinamide (500mg for a week) and it made my skin itch so bad everywhere so I had to stop that. Good thing I didn't have that reaction with NAD.

Obviously methylation is more than just B12. I also take TMG, B2, B6, folate, magnesium and potassium. Each one of us may need a different combo of these and different doses, so it's wise to be tested. I only meantthat if you are on a steady methylation protocol that you might need to increase B12 a bit due to the effect of niacin products.

I did my NAD IV yesterday. What a trip. The nurse put a little of the NAD directly into the catheter (why on God's green earth would she do that?? I don't know). Anyway those few drops she put in were intense. It was like electricity through my body + burning everywhere + plus a clenching in the organs in my abdomen. My head was hot and dizzy and spinning. Holy shit what an experience. After that she put it in the bag and on a slow drip. After an hour we sped it up to a pretty fast drip and I was ok except my heart was beating harder than normal. After, she did a Myer's push.

Your symptoms track with my experience. Too fast or by itself is very intense. I have the Myers cocktail in the same IV bag.

Anyway, today I feel like a normal person. I was even able to eat normally! (I was so worn down the last two weeks that I didn't have the energy to digest much food). I would do the IV more often but that 250mg IV was $350 so that's out of the question.

The NAD component of my IV is about $60. It is definitely cheaper to do sublingually, but the effect is less with sublingual.

One interesting thing about glutathione (you mentioned it making you feel better after the NAD)...I took it orally (liposomal) for a couple months when I wasn't sick and it made me mad. Anxiety, anger, feeling on edge. I had to stop.

Glutathione can help mobilize toxins, like mycotoxins and heavy metals. It can broken down into its constituents, including glutamine, which may affect mood.

With IVs, I only get glutathione after a bag with methylating nutrients and B1. I also get it with molybdenum. B1 and molybdenum are used in the transsulfuration pathway, the final step of detoxing before the toxins leave your body. If you don't have enough of either, the toxins will get reabsorbed, giving you symptoms.

It would be worth investigating why glutathione gives you negative symptoms. It's our body's strongest antioxidant and the symptoms are telling you something.

Have you done a Genova Diagnostics NutrEval, been tested for mycotoxins, and done a Doctors Data provoked urine Heavy Metals test?

 

[Lieselotte]

@Learner1

I have done a SpectraCell test and haven't gotten the results back yet. Looks like it's not the same as the NutrEval, but maybe it can shed some light on my nutritional status.
I have it on my list to do a Heavy Metal test - not sure whether my doc does Dr Data version or not. I need to get around to it. I haven't been tested for mycotoxins... I agree I would love to find out why Glutathione doesn't do it for me.

I would take $60 over $350 any day! lol I would love to find a doctor that would "prescribe" me the stuff for IVs so I could talk my mom into doing them for me (she's a nurse). I don't know what would be harder, getting the stuff prescribed or getting my mom on board.

Do you find the NAD keeps you up at night?

 

[frozenborderline]

I would really really really love to find a doctor who would prescribe NAD+ ivs. Unfortunately this seems difficult

 

[frozenborderline]

Obviously methylation is more than just B12. I also take TMG, B2, B6, folate, magnesium and potassium. Each one of us may need a different combo of these and different doses, so it's wise to be tested. I only meantthat if you are on a steady methylation protocol that you might need to increase B12 a bit due to the effect of niacin products.

Your symptoms track with my experience. Too fast or by itself is very intense. I have the Myers cocktail in the same IV bag.

The NAD component of my IV is about $60. It is definitely cheaper to do sublingually, but the effect is less with sublingual.

Glutathione can help mobilize toxins, like mycotoxins and heavy metals. It can broken down into its constituents, including glutamine, which may affect mood.

With IVs, I only get glutathione after a bag with methylating nutrients and B1. I also get it with molybdenum. B1 and molybdenum are used in the transsulfuration pathway, the final step of detoxing before the toxins leave your body. If you don't have enough of either, the toxins will get reabsorbed, giving you symptoms.

It would be worth investigating why glutathione gives you negative symptoms. It's our body's strongest antioxidant and the symptoms are telling you something.

Have you done a Genova Diagnostics NutrEval, been tested for mycotoxins, and done a Doctors Data provoked urine Heavy Metals test?

i even get negative symptoms from intranasal glutathione sometimes , although sometimes I really get positive symptoms from it. Troubleshooting all of the different pathways involved in metabolism seems incalculably difficult without a really really excellent doctor guiding it. My ad hoc approach sometimes really works, (bcaas and thiamine megadose have both helped me a lot) and sometimes totally fails

 

[frozenborderline]

Injected GcMAF and Nexavir. Together they gave me a big boost.

Curious about gcMAF is there any way to obtain or make this, I saw some gcmaf yogurt tutorial where they used colostrum