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 7.8%
  • I had 1-6 NAD+ IVs and did not benefit

    Votes: 2 2.2%
  • 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: 4 4.4%
  • I tried but did not benefit from oral NAD+

    Votes: 17 18.9%
  • 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 12.2%
  • I have not tried NAD+ and have not benefited from a NAD+ precursor (NIAGEN, Niacin, B3, NADH etc)

    Votes: 14 15.6%
  • I have never tried any form of NAD+ or NAD+ precursor

    Votes: 31 34.4%

  • Total voters
    90

Learner1

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I just spoke to both my ME/CFS doctor and my functional medicine doctor today. Both agreed that getting more NAD+ into me on a daily basis would be helpful, starting where I am, and moving up to 150mg.

We discussed upping my IV dose of it, but as my insurance won't cover it, it'd be expensive, and I'd rather spend my IV money working on oxidative stress, methylation, carnitine, etc.

I had written to the CEO of LIAS research, where I got my sublingual 25mg tablets, and they now have higher doses, which I'm going to try. My doctor noted her comment on how you know when you've taken too much, and said its the "ice cream headache" he's warned me about. So, one can take too much.

She also refers to loading to prevent sliding backwards, or the roller coaster I've been feeling.
Thank you for writing. I am thrilled that our NAD+ is helping. We have many that have asked for up-dosing. Dr. Latham has now produced a 100 mg lozenge, that has worked very well for many that were taking 3 or so a day of the 25mg lozenges. We also developed a 500mg sachet. (Both now available on our website).

The sachet contents are a powder that is added to 4 oz of water and sipped over the course of an hour. Every sip is swished in the mouth and held for 30-60 seconds.

This has helped many that had been getting IV treatment to eliminate the IV. The protocol used in one of the wellness clinics is to take our 500mg daily for 5 days, stop for 2 days and then do 5 more days. Then go onto the 100mg per day, and then scale back to the 25mg.

They found that the issue is loading enough NAD+ to keep from slipping backwards. Which is what you are seeing after a few hours.

We do sell 1,000mg sachet packages to Dr.’s offices who use to increase NAD+ in mitochondrial based diseases, and they have used the 1,000mg twice a day with success. However, that product we sell to Doctors only so they can titrate the very high doses.

What the research has told us, is that when you have a deficiency in NAD+ you will see various mitochondrial based diseases and when given sufficient NAD+ there is improvement in those areas. The research has shown that NAD+ is safe, but like any product always discuss with your health care professional regarding your own specific circumstances.

When someone experiences too much NAD+, there are 2 common side effects. The first is a slow down in adding a column of numbers, and the second is some neck stiffness. For me, I know I can add 2 or 3 sets of numbers in my head, like 23 and 49, if I need to stop and write it down or can’t think that through, I know to back off on my NAD+ for 2 days. The second is just some neck stiffness that feels like I have been driving a car too long; again, I stop the NAD+ for 2 days.

Several of the Doctors suggest adding a low dose aspirin which provides relief of the stiffness issue.

Please feel free to share on the Phoenix Rising message board for patients and caregiver with ME/CFS.
 

Learner1

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The LIAS website didn't have all of the choices for the higher doses on it, so I wrote to them.

I got a call back from Gina, who recognized my name. I learned a few things from her:
  • She has chronic Lyme, which is why her pharmaceutical biochemist husband developed it for her.
  • They've had 3 main markets: addicts and patients with Alzheimer's and Parkinson's.
  • As @Jesse2233 has found, the addicts are on shorter, high dose protocols
  • As my doctor has noted, NAD+ is a form of niacin which can use up methyl groups. This is why they recommend aspirin of you OD on it. Increasing methyl B12 intake might be prudent.
Both my doctors want me to try 150mg a day to see if I can get more consistency rather than being on a roller coaster...

The one problem I've had is on it, I've been able to increase my activity levels and exercise more. I feel great at the time, but then get slammed by PEM. Someone here suggested taking BCAAs, which worked well - I'd found more NAD+, T3, or hydrocortisone did not help.

This led to reviewing my amino acids on my latest NutrEval. All were low, except for two I supplement significantly. I am taking 40+ capsules of various aminos plus eating 100g of protein faily and its not enough. I've had distinct positive reactions to taking individual aminos, so I know they help. And the pattern of lows matches Fluge and Mella's PDH block/amino research.

So, in addition to the NAD×, I'm getting a customized amino acid powder made, as all the commercial protein powders have too much of what I don't need (like arginine which can feed herpes viruses) and not enough of what do need.

I think I'm going to do fewer NAD+ IVs and focus on the sublingual and the aminos, which seem to be helping me have a more normal life.
 

ljimbo423

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Both my doctors want me to try 150mg a day to see if I can get more consistency rather than being on a roller coaster...

The one problem I've had is on it, I've been able to increase my activity levels and exercise more. I feel great at the time, but then get slammed by PEM.
Hi Learner1 - I have the same problem with NADH. Even very tiny doses give me huge amounts of energy.

It's hard not to over do it when I have so much energy and I feel so good! Like you though, I eventually crash with PEM.

Fatigue isn't nearly the issue for me it use to be, even with PEM but the headaches, upper back and neck pain can be pretty bad.

Good luck with the customized amino acid powder!

Jim
 

Learner1

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I was using Enada NADH for awhile. It helped, but wore off pretty fast. I believe it was converting to NAD+. I believe NAD+ is more direct snd more effective. Also, there's a lot in the literature about the ratio between the two, where too much NADH in relation to NAD+is related to several diseases.

I'm sure the aminos will help. They already do. I just need a more efficient delivery mechanism... Neither my doctors or the studies know what triggers the amino burning and how to stop it... Perhaps the NAD+ will help...
 

ljimbo423

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Also, there's a lot in the literature about the ratio between the two, where too much NADH in relation to NAD+is related to several diseases.
I have read that too and it concerns me taking the NADH. I have tried 75-100mg a day of sublingual NAD but didn't notice any changes good or bad. What's really strange is I use to take 5-20mg a day of NADH and just felt mild stimulation.

Now I take only 100mcg and my energy is high all day! I guess my metabolism has drastically changed, which makes sense given the amount of supplements I take now.

The dose being so low though makes it very difficult to titrate up or down.
 

Learner1

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What NAD product did you take? It might not have been actual NAD+. There are a lot of products that say they're NAD+ but are not.

How do you get a mcg dose?
 

ljimbo423

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What NAD product did you take? It might not have been actual NAD+. There are a lot of products that say they're NAD+ but are not.
Source naturals.

How do you get a mcg dose?
Had to get creative.:) I took a 10mg pill NADH that weighed 180mg, crushed it up and used a micro-scoop to approximate 100mcg.

I have a micro-scoop that holds 10mg of powder and filled it up about 1/3 of the way, to equal 2-3 mg powder and about 100-150mcg NADH.:D Trying to stay healthy is a full time job!
 

Learner1

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Source Naturals coenzymated B3 is a niacin product. I strongly doubt it is pure NAD+ especially at that price.

I hope you're taking the NADH sublingually. My friends at Thorne say that the molecule is too big to properly get through the digestive system.

And you may want to look into the NAD+/NADH ratio issue. See the attached, which also discusses the PDH issue.

This discusses some of the pathways. I have taken tryptophan, P5P (which converts to B3), niacinamide, NADH, and NAD+ and have found that it NAD+ will make energy.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3683958/#!po=26.6304

Also, if you are taking any of the niacin/NADH/NAD+ variants, it will increase your need for MB12.
 

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ljimbo423

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Source Naturals coenzymated B3 is a niacin product. I strongly doubt it is pure NAD+ especially at that price.
I don't have a good feeling about that product either. I saw the link you put up to a high quality NAD but am not ready in invest in it yet. I can only stretch a dollar so far. :)

I hope you're taking the NADH sublingually.
I am taking it sublingually. I am so sensitive to it's stimulating effects though, I can just swallow it and still get a milder stimulating effect from what makes it through the gut.o_O

And you may want to look into the NAD+/NADH ratio issue. See the attached, which also discusses the PDH issue.
Thanks for the links. They will keep me out of trouble for a while!

Also, if you are taking any of the niacin/NADH/NAD+ variants, it will increase your need for MB12.
That makes good sense. I have plenty on hand if I need it. Thanks!
 

junkcrap50

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Just a quick report on my experience taking LIAS sublingual NAD+.

I've been taking 100mg sublingual NAD+ per day for about 2 weeks now, after using 2 weeks to build up to the 100mg/day dose. I have not noticed any effects, positive or negative. The only slight possible symptom is some increased lactic acid feeling in my muscles, but I can't be sure if the feeling is out of the ordinary or, if it is increased, due to the NAD+.

I take 4x 25mg LIAS sublingual tablets, taking one back to back to back to back.

I'm assuming this means that I am very depleted in NAD+ and this dose it not enough to build up my NAD+ levels.
 

Learner1

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Or, is lack of NAD+ your problem? Maybe you don't need it.

It very well may be that you need more, but I've found that giving me more NAD+ has exposed other issues, like my PDH block/low BCAA problem. Maybe you're lacking CoQ10, riboflavin, thiamine, B12, amino acids, glutathione, thyroid, or cortisol??

And, though it's helped me consistently over the past 3 months, I'm finding I'm more fatigued this week - either from halving my Valcyte dose, delaying my IVIG, or because the trees are pollinating.

Like I said at the beginning, I think it can help, but I'm not convinced it's a cure.
 

nanonug

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Or, is lack of NAD+ your problem? Maybe you don't need it.
It very well may be that you need more, but I've found that giving me more NAD+ has exposed other issues, like my PDH block/low BCAA problem. Maybe you're lacking CoQ10, riboflavin, thiamine, B12, amino acids, glutathione, thyroid, or cortisol??
This.

NAD+ is one part of the puzzle but there are other pieces in the mitochondrial hypofunction landscape that also need to be considered. Considering the expense associated with NAD+ IV, I am at this time more comfortable just supplementing with nicotinamide riboside and redirecting the rest of the cash to other things, such as those mentioned by @Learner1, in addition to dichloroacetate.
 

junkcrap50

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I have some more information on NAD+ pricing and protocols from 3 pharmacies that offer it.

IV NAD+ Prices
NAD+ comes from each pharmacy in 500mg vials
  • College Pharmacy: 500mg vial = $75 (100 mg/ml 5ml vial)
  • Archway Apothecary: 500mg vial = $116 (50 mg/ml 10ml vial)
  • AnazaoHealth Pharmacy: 500mg vial = $125 (100 mg/ml 5ml vial)
AnazaoHealth also offers a NAD+/Niacin sublingual tablet (15mg/15mg) for $1 per tablet.

Archway Apothecary offers many different delivery methods of NAD+, which can be seen in the photo below:
upload_2018-4-3_15-34-31.png

NAD+ Infusion Protocols:
One pharmacy did email some PDFs of some infusion protocols on how to dose the NAD+, which they all seem to be pretty similar. The PDFs attached have some more information than the picture below and includes supplements that may also be given. Interestingly, the NAD+ is just given in a plain saline solution. Any nutritional IVs given are done before the NAD+ IV. Each vial is 500mg.

upload_2018-4-3_15-34-57.png

upload_2018-4-3_15-35-9.png

upload_2018-4-3_15-36-7.png

upload_2018-4-3_15-38-58.png

As you can see, these detox protocols give up to 1500mg infusions with doses decreasing the as the protocol continues. I assume this is to maximize detox support and to relieve detox symptoms. Perhaps, protocols for mitochondrial diseases or disorders may be the opposite: start low and increase the dose. I'm waiting to talk to one of the NAD+ doctors that runs the Louisiana clinic and see what he has to say.

The costs of buying direct from the compounding pharmacy via your own doctor is SIGNIFICANTLY cheaper than using a NAD+ infusion clinic.

The pharmacy's infusion nurse also said that NAD+ is administered alone and that it is best to use Myers, Shraders, or other nutritional and mineral IV bags before NAD+. It is done in order to mineralize and strengthen Phase 1 and Phase 2 liver detox pathways because NAD+ is metabolized in the liver. Also, supplemental oxygen can hto help reduce side effects and "drive the infusions" (assume a faster delivery rate) while giving IV NAD+. Oral supplements supporting amino acids and minerals should also be given with these infusions.
 

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junkcrap50

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Or, is lack of NAD+ your problem? Maybe you don't need it.

It very well may be that you need more, but I've found that giving me more NAD+ has exposed other issues, like my PDH block/low BCAA problem. Maybe you're lacking CoQ10, riboflavin, thiamine, B12, amino acids, glutathione, thyroid, or cortisol??

And, though it's helped me consistently over the past 3 months, I'm finding I'm more fatigued this week - either from halving my Valcyte dose, delaying my IVIG, or because the trees are pollinating.

Like I said at the beginning, I think it can help, but I'm not convinced it's a cure.
Perhaps, but it seems like many of the anecdotal stories from the NAD+ infusions centers is that it takes a couple days for someone to notice any benefits from the IV NAD+. So, that's the assumption I'm working with right now. But I'm open to other possibilities and will address them if they show up. I'm still waiting on an appointment with my naturopath.
 

Learner1

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@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.

Next, 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+.

The attached discusses the 4 NAD+ pathways... I don't think all of them are working right in me, so I'm so deting about other ME/CFS patients.

The pharmacy's infusion nurse also said that NAD+ is administered alone and that it is best to use Myers, Shraders, or other nutritional and mineral IV bags before NAD+.
If you are doing the high dose for addicts.

I get the smaller amount of NAD+ in a customized nutrient bag, with B complex, B5, MB12, HB12, folinic acid, carnitine, taurine, methionine and a few minerals. It's followed by glutathione, and then I HBOT.
It is done in order to mineralize and strengthen Phase 1 and Phase 2 liver detox pathways because NAD+ is metabolized in the liver. Also, supplemental oxygen can hto help reduce side effects and "drive the infusions" (assume a faster delivery rate) while giving IV NAD+. Oral supplements supporting amino acids and minerals should also be given with these infusions.
This is what my doctor has me doing. However, I'm on a custom protocol based on my labs, not a protocol designed for addicts.

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.
 

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Learner1

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This.

NAD+ is one part of the puzzle but there are other pieces in the mitochondrial hypofunction landscape that also need to be considered. Considering the expense associated with NAD+ IV, I am at this time more comfortable just supplementing with nicotinamide riboside and redirecting the rest of the cash to other things, such as those mentioned by @Learner1, in addition to dichloroacetate.
Nicotinamide riboside didn't work for me. The oral NAD+, which does work is in the same price range as the NR. It has fewer conversions to get to ATP.