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

Jesse2233

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NMN was given in this Japanese study to mice with type 2 diabetes using a 7 day protocol to increase NAD+ levels and reverse insulin intolerance

We administered NMN at a dose of 500 mg/kg body weight/day intraperitoneally to HFD-fed male and female diabetic mice for 10 and 7 consecutive days, respectively. No overt abnormalities or changes in body weight were detected during this time (data not shown). NMN administration successfully restored NAD+ levels in the liver and WAT of diabetic mice, and even in diabetic skeletal muscle, a moderate but significant increase in NAD+ was detected (Figure 1B). These results demonstrate the efficacy of NMN treatment in ameliorating the underlying defect in NAD+ biosynthesis in HFD-induced diabetes.

Strikingly, NMN administration completely normalized impaired glucose tolerance in diabetic female mice (Figure 2A).

https://www.sciencedirect.com/science/article/pii/S1550413111003469
 

Jesse2233

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And the famous 2017 David Sinclair paper on NAD+ and aging from Harvard

NAD+ binding modulates protein interactions
An unexpected function of the oxidized form of nicotinamide adenine dinucleotide (NAD+) could underlie some effects of aging and propensity to age-related diseases. Li et al. found that the protein DBC1 (deleted in breast cancer 1) contains a domain that specifically binds NAD+. Binding of NAD+inhibited the interaction of DBC1 with PARP1 [poly(adenosine diphosphate–ribose) polymerase 1], an enzyme important in DNA repair. Activity of PARP1 is inhibited by interaction with DBC1. Thus, the reduced abundance of NAD+ associated with aging may decrease PARP1 activity by promoting the interaction of PARP1 with DBC1. This mechanism could help explain the reported rejuvenating actions of NAD+supplementation in older animals.

Science, this issue p. 1312
 

Learner1

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@Learner1 to be honest I’m having trouble finding much published literature on the 7 day protocol. I may be missing it or it may just be a clinical consensus based on observered response windows
I didn't see any either. And I agree with your armchair speculation above. We simply don't know what happens.

Adding NAD+ could potentially help various systems work better. But there can be down sides, too. Aside from running the system "hot" and causing membrane damaging oxidative stress, I'm wondering about inhibiting PARP too much. If my cancer were to recur, likely I would be offered a PARP inhibitor.

From the Wikipedia entry:

DNA is damaged thousands of times during each cell cycle, and that damage must be repaired, including in cancer cells. Otherwise the cells may die due to this damage.

BRCA1, BRCA2 and PALB2 are proteins that are important for the repair of double-strand DNA breaks by the error-free homologous recombinational repair, or HRR, pathway. When the gene for either protein is mutated, the change can lead to errors in DNA repair that can eventually cause breast cancer. When subjected to enough damage at one time, the altered gene can cause the death of the cells.

PARP1 is a protein that is important for repairing single-strand breaks ('nicks' in the DNA). If such nicks persist unrepaired until DNA is replicated (which must precede cell division), then the replication itself can cause double strand breaks to form.

Drugs that inhibit PARP1 cause multiple double strand breaks to form in this way, and in tumours with BRCA1, BRCA2 or PALB2 mutations, these double strand breaks cannot be efficiently repaired, leading to the death of the cells. Normal cells that don't replicate their DNA as often as cancer cells, and that lack any mutated BRCA1 or BRCA2 still have homologous repair operating, which allows them to survive the inhibition of PARP.
This is all fine and well, but when I went to the United Mitochondrial Disease Conference, researchers described how PARP is an important mechanism for repairing DNA. Inhibiting it could have risks.

And indeed, the side effects of PARP inhibitor drugs are anemia and fatigue. And worse, this from the Oncology Nurse Advisor website:

Myelodysplastic syndrome (MDS) and acute myeloid leukemia (AML) have been reported in patients receiving poly(ADP-ribose) polymerase (PARP) inhibitors such as olaparib (Lynparza), rucaparib (Rubraca), and niraparib (Zejula). Warnings about MDS or AML are listed in the prescribing information for the above the PARP inhibitors currently used in the United States.
So, I'm treading carefully and just wary of too much of a good thing until I see more science on this. Doing a trial with different doses and antioxidant and lipid support might be very interesting.
 

Jesse2233

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Another interview with Tom where he discusses his protocol (including ongoing maintenance), his symptoms, and recovery in far greater detail

Apparently he had 12 days of infusions to start (and didn’t see benefit until day7). Also he had monthly infusions for about a year after, and didn’t feel fully recovered until the one year mark

 

Jesse2233

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I found an account of a young woman in the UK with ME/CFS (including PEM) in a private Facebook group who had 10 NAD+ (250mg) infusions over two weeks.

Reported benefits in week following the therapy:
  • Able to leave the house every evening with friends
  • Worked 4 days from home
  • Went into the office 1 day
  • Able to drink wine / prosecco and able to function the day after
  • Did a HIIT workout
  • Still reports some fatigue and neuro symptoms
  • Mitigating factor = she had also had stem cells
She went to Bionad clinic in London
 
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Jesse2233

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I would be remiss if I didn't include this account of a severe Lyme patient made permanently worse by an NAD+ infusion administered too quickly. She had a negative reaction the first day, but was pressured to keep going for 10 days total. Some more details:
  • Middle aged woman
  • Went to a "push through" clinic in Hawaii
  • Said it affected her heart and brain, caused an autoimmune reaction and massive connective tissue destruction
  • She now can't walk, sit up, or hold up her head
  • She was also undergoing a rapid taper off gabapentin and ativan and had nitrous oxide issues before starting
 

junkcrap50

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Another interview with Tom where he discusses his protocol (including ongoing maintenance), his symptoms, and recovery in far greater detail

Apparently he had 12 days of infusions to start (and didn’t see benefit until day7). Also he had monthly infusions for about a year after, and didn’t feel fully recovered until the one year mark
I'm still a little apprehensive of buying Tom's testimonial for some reason. I believe that it helped or cured him. But when listening to him on podcasts, it seems like his story about his illness changes or at least is inconsistent. So he had chronic fatigue syndrome and/or Lyme disease, then fluoroquinolone toxicity / poisoning, then addicted(?) to opioids? It just doesn't seem like a clear case of ME/CFS, the pathology, rather than just chronic fatigue, the symptom.

I found an account of a young woman in the UK with ME/CFS (including PEM) in a private Facebook group who had 10 NAD+ (250mg) infusions over two weeks.
250mg seems like a lower dose from other infusion clinics. I thought US NAD clinics give 750mg to 1000mg+ per infusion. 250mg is much closer to Learner1's IV dose of 150mg.
 

Jesse2233

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o he had chronic fatigue syndrome and/or Lyme disease, then fluoroquinolone toxicity / poisoning, then addicted(?) to opioids? It just doesn't seem like a clear case of ME/CFS, the pathology, rather than just chronic fatigue, the symptom.
My understanding is that he had an infection picked up in Latin America that was treated with fluoroquinolone which triggered some sort of immune dysfunction that involved pain, cognitive impairment, and fatigue. To treat the pain he was prescribed opioids which led to dependency. The Lyme seems like something an LLMD found after the fact to try to explain symptoms.

Most of us would probably match the broad contours of that story. The opioids are a mitigating factor though.

250mg seems like a lower dose from other infusion clinics. I thought US NAD clinics give 750mg to 1000mg+ per infusion. 250mg is much closer to Learner1's IV dose of 150mg.
Yes true. I just spoke with a clinic in Orange County (which is covered by insurance!) that does a 1,500mg / all day / 10 day NAD+ protocol with a Meyers / amino base.

I'm seriously considering it, though I would likely start at 200mg and work my way up.

Also trying to get my NAD+ serum levels measured by a research lab
 

Sancar

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My understanding is that he had an infection picked up in Latin America that was treated with fluoroquinolone which triggered some sort of immune dysfunction that involved pain, cognitive impairment, and fatigue. To treat the pain he was prescribed opioids which led to dependency. The Lyme seems like something an LLMD found after the fact to try to explain symptoms.

Most of us would probably match the broad contours of that story. The opioids are a mitigating factor though.



Yes true. I just spoke with a clinic in Orange County (which is covered by insurance!) that does a 1,500mg / all day / 10 day NAD+ protocol with a Meyers / amino base.

I'm seriously considering it, though I would likely start at 200mg and work my way up.

Also trying to get my NAD+ serum levels measured by a research lab
Hey Jesse2233 ~ Where & what lab test will you have run in order to “test for NAD+ serum levels”? Which Dr will order the test for you. I presume you will run this through your insurance? I hope so!

Thanks for the info! :thumbsup:
 

Learner1

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Coincidentally, I had a 40 minute conversation this morning with a scientist at a lab that measures mitochondrial function and they are developing some other tests as well that might be helpful. Its a small company and they've been analyzing Complex I and IV function for autistic patients.

He recently learned about ME/CFS and is excited to see if their testing can help us. They recently found a Complex I abnormality in a patient who was bedridden and couldn't see and once the doctors could see whatveas going on, they worked up a protocol for him that dramatically fixed his function.

I'm going to do their test next week and will report back on what I learn, which should be fairly soon afterwards.
 

Jesse2233

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Hey Jesse2233 ~ Where & what lab test will you have run in order to “test for NAD+ serum levels”? Which Dr will order the test for you. I presume you will run this through your insurance? I hope so!

Thanks for the info! :thumbsup:
I’ve been reaching out to researchers at universities in the US and Australia. I’m hoping they’ll do it in the name of science if I can send them a serum sample
 

Learner1

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Another interview with Tom where he discusses his protocol (including ongoing maintenance), his symptoms, and recovery in far greater detail

Apparently he had 12 days of infusions to start (and didn’t see benefit until day7). Also he had monthly infusions for about a year after, and didn’t feel fully recovered until the one year mark

I just had time to listen to the podcast. Geez, do these guys sell timeshares, too?

I agree with @junkcrap50 that the story doesn't seem credible. I have an extremely difficult time believing his Lyme was cured.

The woman in Hawaii worries me... Again, if you push a broken system too fast...

The approach of figuring out what problem our mitochondria have and then working the problem systematically seems appealing.
 

Jesse2233

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The woman in Hawaii worries me... Again, if you push a broken system too fast...
Yes certainly a cautionary tale

The approach of figuring out what problem our mitochondria have and then working the problem systematically seems appealing.
Agreed. Some combination of NutraEval and the mito complex testing would give an interesting picture.

I just had time to listen to the podcast. Geez, do these guys sell timeshares, too?
Lol San Diego real estate isn’t cheap. I’m inclined to believe them / him though given other anecdotal reports I’ve read
 

Jesse2233

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One more from a fellow POTS patient (young male) on FB. He was very severe (bedridden, hospitalized, unable to self feed).

His results were significant but not transformative like Tom’s. He had 4 days total

It all started last year after I was taking large doses of methylb12, methylfolate, and potassium (b/c B12 and folate can cause hypokalemia). I was trying to treat minor fatigue and allergies (no POTS back then). I briefly had vast increases in strength and energy. Then I started getting tunnel vision and crashing.

This put me in the ER a couple times with low potassium, and had reactive hypoglycemia for a while. Eventually I ended up with exercise intolerance, which turned into full body weakness and POTS.

I have been mostly bed-ridden since October. The paralytic weakness and fatiguability is mostly gone. I still have POTS, though it's improving and I can walk with a walker for short distances. Still pretty disabled.

Positive tests:

- CellTrend a1-alpha adrenergic, muscarinic 4 receptor autoantibodies
- MCAS: high histamine, prostaglandins (probably not root cause because I had allergies for years)
- Small fiber peripheral neuropathy in legs (Therapath skin biopsy)
- Candida overgrowth in gut (Candida Immune Complex test), and off-the-charts arabinose yeast metabolite (organic acids)
- Zinc deficiency
- High EBV EA and IgG, negative PCR
- Bad performance on pulmonary test
- EMG: minor neuromuscular junction fatiguability, and abnormal jitter on small-fiber EMG

Negative for myasthenia gravis and Lambert-Eaton.

So my condition is confusing, because it's hard to identify a single cause. It has features of autoimmune dysautonomia, but there are also features of ion channelopathy (like periodic paralysis), since it was hypokalemia that put me in the ER with paralysis. There are also similarities with Guillain-Barre, though I lack the typical viral onset or areflexia.

Treatments: LDN, potassium, electrolytes, colostrum, vitamins, zinc, probiotics/prebiotics, antihistamines, antifungals

I did NAD+ IVs after I came out of the hospital after collapsing last year. I was nearly paralyzed and extremely weak, probably due to a combination of dysautonomia, and perhaps hypokalemic periodic paralysis. My parents took me to a naturopath who put me on NAD+ IV for 4 days. This treatment gave me more energy. While on the IV, I was able to move my arms and eat solid food again.

It didn't fix my dysautonomia or weakness (which were severe), but it gave me some more strength and energy. I totally believe it was turbocharging my mitochondrial, but I think my problem is not primarily a mitochondrial problem.
 
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junkcrap50

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My understanding is that he had an infection picked up in Latin America that was treated with fluoroquinolone which triggered some sort of immune dysfunction that involved pain, cognitive impairment, and fatigue. To treat the pain he was prescribed opioids which led to dependency. The Lyme seems like something an LLMD found after the fact to try to explain symptoms.

Most of us would probably match the broad contours of that story. The opioids are a mitigating factor though.
Yes. I most likely think he was misdiagnosed as having ME/CFS and/or Lyme.

I'm seriously considering it, though I would likely start at 200mg and work my way up.
I'm also seriously considering this therapy. Fortunately, a parent of mine is a doctor so I will be able to get the infusion at cost and only have to rent an IV pump/drip machine for use at home. I haven't contacted the compounding pharmacy who sells it for an exact price. But I found a comment online by someone who did NAD+ infusions at home via doctor friend and nurse friend and it was $1,000 for 10 infusions - which is a STEAL compared to what these addiction clinics charge.

I'm still reading about NAD+ and having my parent research and read about it. So, I'm probably 3 months away from trying it if I decide to. I want to also talk to my naturopath who's a PhD in biochemistry about it too and have him/her read about it.

Coincidentally, I had a 40 minute conversation this morning with a scientist at a lab that measures mitochondrial function and they are developing some other tests as well that might be helpful. Its a small company and they've been analyzing Complex I and IV function for autistic patients.

He recently learned about ME/CFS and is excited to see if their testing can help us. They recently found a Complex I abnormality in a patient who was bedridden and couldn't see and once the doctors could see whatveas going on, they worked up a protocol for him that dramatically fixed his function.

I'm going to do their test next week and will report back on what I learn, which should be fairly soon afterwards.
Very interesting. Do you have the name of the lab? A research lab at a university or a commercial lab?

I just had time to listen to the podcast. Geez, do these guys sell timeshares, too?

I agree with @junkcrap50 that the story doesn't seem credible. I have an extremely difficult time believing his Lyme was cured.

The woman in Hawaii worries me... Again, if you push a broken system too fast...

The approach of figuring out what problem our mitochondria have and then working the problem systematically seems appealing.
The Hawaii person does give me pause too. However, I've come across some research (that I'm still slogging through) that indicates that fixing NAD+ levels will solve many inflammatory loops. So, if the mito dysfunction is about the mito creating inflammation, you could short that cycle and solve the mito inflammation problem. Sort of a chicken or the egg thing. I thought of you, Learner1, and how you said you don't want to rev up the mitochondria to cause more information when I was reading it.

One more from a fellow POTS patient (young male) on FB. He was very severe (bedridden, hospitalized, unable to self feed).

His results were significant but not transformative like Tom’s. He had 4 days total
"It all started last year after I was taking large doses of methylb12, methylfolate, and potassium (b/c B12 and folate can cause hypokalemia). I was trying to treat minor fatigue and allergies (no POTS back then). I briefly had vast increases in strength and energy. Then I started getting tunnel vision and crashing.

This put me in the ER a couple times with low potassium, and had reactive hypoglycemia for a while. Eventually I ended up with exercise intolerance, which turned into full body weakness and POTS."
Soumds like he was doing the Fredd Protocol, lol. Taking high doses of mB12 and mfolate can be dangerous.
 

Jesse2233

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I'm also seriously considering this therapy. Fortunately, a parent of mine is a doctor so I will be able to get the infusion at cost and only have to rent an IV pump/drip machine for use at home. I haven't contacted the compounding pharmacy who sells it for an exact price. But I found a comment online by someone who did NAD+ infusions at home via doctor friend and nurse friend and it was $1,000 for 10 infusions - which is a STEAL compared to what these addiction clinics charge.

I'm still reading about NAD+ and having my parent research and read about it. So, I'm probably 3 months away from trying it if I decide to. I want to also talk to my naturopath who's a PhD in biochemistry about it too and have him/her read about it.
Wow that is a steal! Please pass on anything you learn
 

Jesse2233

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The Hawaii person does give me pause too. However, I've come across some research (that I'm still slogging through) that indicates that fixing NAD+ levels will solve many inflammatory loops. So, if the mito dysfunction is about the mito creating inflammation, you could short that cycle and solve the mito inflammation problem. Sort of a chicken or the egg thing.
Yes I’ve had similar thoughts. Perhaps it doesn’t matter what came first if there are feedback loops at play. Perhaps correcting one creates a virtuous cycle that corrects the others so long as there’s proper co-factor support. This would assume that there’s no an ongoing percipating factor that can’t be directly addressed with better mito function such as an occult infection, a heavy metal toxicity, or a runnaway autoimmune process
 

Learner1

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I'm still reading about NAD+ and having my parent research and read about it. So, I'm probably 3 months away from trying it if I decide to. I want to also talk to my naturopath who's a PhD in biochemistry about it too and have him/her read about it
I'd love to hear what your naturopath says, along with any further insights from.your reading. :nerd:
So, if the mito dysfunction is about the mito creating inflammation, you could short that cycle and solve the mito inflammation problem. Sort of a chicken or the egg thing. I thought of you, Learner1, and how you said you don't want to rev up the mitochondria to cause more information when I was reading it.
I wasn't thinking of inflammation.

Mitochondria can be physically damaged, with deranged inner membranes, like in cancers, strand breaks in mtDNA, and damaged membranes due to peroxynitrite/free radical damage. They also can be filled with toxins as in the photos below, where the black stuff is arsenic sequestered in the mitochondria, and can clog up the mitochondrial membrane. There are also generic or acquired flaws in each of the complexes.
arsenic in mitochondria.png

If you and your doctor don't know what the problem is with your mitochondria and you all of a sudden add a lot of NAD+, the results could be unpredictable, depending on what the problem is (and whether its even a problem in your mitochondria).

This could be why @Jesse2233 's case studies vary. My doctor is quite familiar with use of high dose NAD+ - he teaches doctors about all kinds of IV therapies. If he thought high dose NAD+ would fix me, he'd have done it by now.
This would assume that there’s no an ongoing percipating factor that can’t be directly addressed with better mito function such as an occult infection, a heavy metal toxicity, or a runnaway autoimmune process
Exactly.;) I don't think it would fix my autoimmune POTS, which is my most disabling problem right now... though its helping me function better day to day. (My cluster of problems is more similar to the guy who got it for 4 days whom had a significant, but not transformative experience.)
 
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