International ME/CFS and FM Awareness Day Is On May 12, 2018
Thomas Hennessy, Jr., selected May 12th to be our international awareness day back in 1992. He knew that May 12th had also been the birthday of Florence Nightingale. She was the English army nurse who helped to found the Red Cross as well as the first school of nursing in the world.
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7 Day NAD+ Infusions (Severe ME/CFS Recovery, Neurological / Mitochondrial / Genetic Repair) + POLL

Discussion in 'Alternative Therapies' started by Jesse2233, Feb 17, 2018.

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What is your experience with NAD+ ?

  1. I had the full NAD+ IV protocol and benefitted (7+ infusions)

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  2. I had the full NAD+ IV protocol and did not benfit (7+ infusions)

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  3. I had 1-6 NAD+ IVs and benefitted

    2 vote(s)
    6.7%
  4. I had 1-6 NAD+ IVs and did not benefit

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  5. I tried and benefited from nasal NAD+

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  6. I tried but did not benefit from nasal NAD+

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  7. I tried and benefited from oral NAD+

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  8. I tried but did not benefit from oral NAD+

    4 vote(s)
    13.3%
  9. I tried and benefited from transdermal NAD+ (patch)

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  10. I tried but did not benefit from transdermal NAD+ (patch)

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  11. I have not tried NAD+ but have benefited from a NAD+ precursor (NIAGEN, Niacin, B3, NADH etc)

    4 vote(s)
    13.3%
  12. I have not tried NAD+ and have not benefited from a NAD+ precursor (NIAGEN, Niacin, B3, NADH etc)

    6 vote(s)
    20.0%
  13. I have never tried any form of NAD+ or NAD+ precursor

    14 vote(s)
    46.7%
  1. Jesse2233

    Jesse2233 Senior Member

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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

     
  2. Jesse2233

    Jesse2233 Senior Member

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

     
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  3. Jesse2233

    Jesse2233 Senior Member

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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
     
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  4. Learner1

    Learner1 Forum Support Assistant

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    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:

    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:

    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.
     
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  5. Jesse2233

    Jesse2233 Senior Member

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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

     
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  6. Jesse2233

    Jesse2233 Senior Member

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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
     
    Last edited: Mar 5, 2018
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  7. Jesse2233

    Jesse2233 Senior Member

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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
     
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  8. junkcrap50

    junkcrap50 Senior Member

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    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.

    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.
     
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  9. Jesse2233

    Jesse2233 Senior Member

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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
     
  10. Sancar

    Sancar Sick of being sick ~ and so is my walking buddy

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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:
     
  11. Learner1

    Learner1 Forum Support Assistant

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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.
     
  12. Jesse2233

    Jesse2233 Senior Member

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    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
     
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  13. Learner1

    Learner1 Forum Support Assistant

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    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.
     
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  14. Jesse2233

    Jesse2233 Senior Member

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    Yes certainly a cautionary tale

    Agreed. Some combination of NutraEval and the mito complex testing would give an interesting picture.

    Lol San Diego real estate isn’t cheap. I’m inclined to believe them / him though given other anecdotal reports I’ve read
     
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  15. Jesse2233

    Jesse2233 Senior Member

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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

     
    Last edited: Mar 5, 2018
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  16. junkcrap50

    junkcrap50 Senior Member

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    Yes. I most likely think he was misdiagnosed as having ME/CFS and/or Lyme.

    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.

    Very interesting. Do you have the name of the lab? A research lab at a university or a commercial lab?

    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.

    Soumds like he was doing the Fredd Protocol, lol. Taking high doses of mB12 and mfolate can be dangerous.
     
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  17. Jesse2233

    Jesse2233 Senior Member

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    Wow that is a steal! Please pass on anything you learn
     
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  18. Jesse2233

    Jesse2233 Senior Member

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    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
     
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  19. Learner1

    Learner1 Forum Support Assistant

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    I'd love to hear what your naturopath says, along with any further insights from.your reading. :nerd:
    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.
    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.)
     
    Last edited: Mar 5, 2018
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  20. aquariusgirl

    aquariusgirl Senior Member

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    @Learner1 can you post the name of the lab that does the mitochondrial testing.?
     
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