The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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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)

    0 vote(s)
    0.0%
  2. I had the full NAD+ IV protocol and did not benfit (7+ infusions)

    0 vote(s)
    0.0%
  3. I had 1-6 NAD+ IVs and benefitted

    2 vote(s)
    6.3%
  4. I had 1-6 NAD+ IVs and did not benefit

    1 vote(s)
    3.1%
  5. I tried and benefited from nasal NAD+

    0 vote(s)
    0.0%
  6. I tried but did not benefit from nasal NAD+

    0 vote(s)
    0.0%
  7. I tried and benefited from oral NAD+

    0 vote(s)
    0.0%
  8. I tried but did not benefit from oral NAD+

    4 vote(s)
    12.5%
  9. I tried and benefited from transdermal NAD+ (patch)

    0 vote(s)
    0.0%
  10. I tried but did not benefit from transdermal NAD+ (patch)

    0 vote(s)
    0.0%
  11. I have not tried NAD+ but have benefited from a NAD+ precursor (NIAGEN, Niacin, B3, NADH etc)

    4 vote(s)
    12.5%
  12. I have not tried NAD+ and have not benefited from a NAD+ precursor (NIAGEN, Niacin, B3, NADH etc)

    7 vote(s)
    21.9%
  13. I have never tried any form of NAD+ or NAD+ precursor

    14 vote(s)
    43.8%
  1. junkcrap50

    junkcrap50 Senior Member

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    @Jesse2233, do you know if any Lyme patients have tried IV NAD+ therapy?

    I see in this thread on mHBOT you've been in discussion with some Lyme patients and have browsed their forums for different treatments. I sometimes also want to search the Lyme community to see how some treatments and therapies have worked for them, but I don't know about any online communities. Do you know which are the best Lyme onlinie communities or forums/boards for patients?
     
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  2. Jesse2233

    Jesse2233 Senior Member

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    @junkcrap50 yes many Lymies have tried NAD+, it seems to help them a lot although I heard of one having a permanent adverse reaction while coming off benzos

    Try LymeNet, HealingWell, and MDJunction for Lyme threads as well as Facebook
     
    Last edited: Feb 25, 2018
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  3. Learner1

    Learner1 Forum Support Assistant

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    NAD+ will help your mitochondria make more ATP. If one gets a reaction, what is wrong with the mitochondria?
     
  4. Hip

    Hip Senior Member

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    Looks like Tom Ingoglia has teamed up to create the NAD Treatment Center — San Diego, CA 92103, which charges $13,500 for 10 days of nicotinamide adenine dinucleotide (NAD+) infusions.

    Regarding the treatment of ME/CFS, the NAD Treatment Center say this:
    On another page of their website, the NAD Treatment Center say:
    However, given that NAD Treatment Center director Tom Ingoglia himself once had ME/CFS, there is not much on the website about treating ME/CFS. No indication of success rate, and only the one rather vague testimonial that I quote above.

    It may be that given the expense of this treatment, not many ME/CFS patients have so far tried it. But alternatively, maybe there were lots of ME/CFS patients who tried it, and got poor results, but these businesses do not report the negative results on their website, as it's bad for business.

    On the Health Rising forum, one ME/CFS patient did try 3 days of NAD IV therapy, but reports it did not help. He says:


    The following places also do NAD+ infusions, so it seems this treatment is popular albeit expensive at present:

    Emerald Neuro-Recover Centers — Cicero, Indiana 46034
    NAD Brain Restoration Therapy — Arroyo Grande, CA 93420
    IV for Life — Newport Beach, CA
    Brain Restoration Therapy — LA, CA
    Colorado Recovery Infusion Center — Centennial, CO 80111
    Dr Robin Bernhoft — Ojai, CA 93023, and Santa Monica, CA 90405
    The Remedy Room — New Orleans, LA 70130

    The Holistic Sanctuary — Rosarito, Mexico

    Brain Reboot NAD+ IV Infusion – Zen Pharmacy — London, SW3 1NY
    IV Boost — London W1G 8SF
    Bionad — London, W1G 6LL
     
    Last edited: Feb 20, 2018
  5. Hip

    Hip Senior Member

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    There is a thread here about the supplement nicotinamide riboside (Niagen is one brand name), which can be used as a building block for nicotinamide adenine dinucleotide (NAD+).

    Some people on the thread reported Niagen had no effect, others like @Mimi in this post reporting a large mood and energy boost from Niagen (nicotinamide riboside). However, two weeks later in this post she reports that nicotinamide riboside is loosing its effects, saying that "I do not feel the same shot of vitality I did the first time I took Niagen."

    She also says:
    Thus Niagen appears similar to NADH, as people often report NAHD is great when they first start on it, but after some time they find it loses its effect.

    A while ago I suggested sublingual NADH to a healthy friend for a general mental boost, and he liked the effect, but reported after some months it stopped working for him. It's possible one may regain the positive effects of NADH by taking a break from it for a while.
     
    Last edited: Feb 24, 2018
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  6. Jesse2233

    Jesse2233 Senior Member

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    At 54:30 Dr Ross Grant (Australian researcher) begins to talk about the clinical use of NAD+ to flip a metabolic switch in high intravenous doses both systemically and in the brain



    Earlier he gives an example of a Parkinson’s patient who has kept their symptoms at bay for several years by having an NAD+ infusion every 4 months

    Dr Grant is very careful to couch these accounts as anecdotal
     
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  7. Jesse2233

    Jesse2233 Senior Member

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    Tom is the person I have been in contact with. I find his story to be credible given the personal details about his illness and his family. He has also set up a non profit to promote NAD+ research.

    I spoke with their staff and they appear to view CFS as a spectrum condition encompassing diagnoses such as Lyme, Floxxies (the post antibiotic syndrome name escapes me), and POTS. I am speaking to their director Dr Milgram next week and will try to get actual numerical details on treatment outcomes.

    I came across this account too. I draw one of 2 conclusions from:

    1. NAD+ IVs only work for certain subgroups

    2. That person did not do the full 7 day regime and so benefit did not occur (there is research evidence indicating it takes 7 days for mice to receive benefit)
     
  8. Hip

    Hip Senior Member

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    @Jesse2233, I believe Tom's account of his recovery from ME/CFS via NAD+ infusions. However, the question is just how often other patients get the same results. In other words, is this a one-off, or can NAD+ infusions be helpful for a certain subset ME/CFS patients, or patients with similar diseases?

    Regarding distinguishing between Lyme, ME/CFS, POTS and fluoroquinolone toxicity syndrome: that should be down to the patients' doctors who will have hopefully diagnosed them correctly (provided the doctor did not use dubious Lyme tests like IGenex or ArminLabs who seem to find almost everyone positive for Borrelia).
     
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  9. Learner1

    Learner1 Forum Support Assistant

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    NAD+ can make your mitochondria work better if you have trouble making or recycling it. If you have enough already (and that's not your problem, its unlikely it will help.

    Nicotinamide riboside is not the same thing. It's a couple of conversions short of NAD+. If your pathway isn't working, it won't convert to NAD+. I've tried it multiple times, at high doses, and it hasn't done anything at all for me, ergo, my pathway doesn't work.

    NADH is closer. It recycles back to NAD+. I've found 10-20mg of the Enada NADH product to help for a couple of hours, enough to get through a workout in the gym (though I still had POTS slow me down).

    I learned I'm getting 150mg of NAD+ in my IVs, which does the most for me. I feel almost normal for 36-48 hours and can exercise. I've been taking 25-50mg a day of the sublingual product, before exercise, and my life has been more normal.

    It helps my mitochondria make more ATP, but it is not solving my antibodies, any infections I may still have, any nutrient deficiencies, or my MCAS problem.

    And, I seem to have a peroxynitrite problem due to low BH4 recycling which leads to ssuperoxide production as my mitochondria make ATP. So, increasing ATP production can increase superoxide production and damage mitochondrialndrial membranes if enough superoxide dismutase cannot be produced (which may be the case with homozulygous SOD SNPs).

    Enhancing BH4 production and recycling, reducing peroxynitrite production, increasing SOD production, and providing nutrients to replenish membranes might be helpful co-strategies. Some may need additional CoQ10, carnitine, etc. as well.

    So, it may be wise for at least some of us to move cautiously with this one unless we have the supports in place.

    Dumping a huge amount of NAD+ into someone with ME/CFS seems, at best, a short term solution, unless one has fixed every other possible problem and only needs ATP alone. Certainly, NAD+ can help processes that use it to work better, but I doubt its a cure and it seems cavalier of someone to market it as a CFS cure.

    I trust my doctor, who is quite familiar with it (as well as with the use of AMP in IVs) and he felt the 150mg of NAD+ as a part of a balanced nutrient and mitochondrial support program was appropriate for me as we work on the other pieces.
     

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  10. Jesse2233

    Jesse2233 Senior Member

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    @Hip agreed on both points

    @Learner1 it’s important to note Dr Grant talks about the importance of supporting other pathways while administering NAD+ IVs
     
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  11. Learner1

    Learner1 Forum Support Assistant

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    Thanks @Jesse2233 !

    Even so, one can only run those pathways so fast. The amounts of NAD+ he's talking about are massive. My experience, having done this for awhile, is that there's an upward limit on how fast things can go, even if the pathways are perfectly balanced.
    Exactly how are they curing Lyme and POTS? And fixing the flox damage??

    ETA - Their main business seems to be in helping former addicts. The medical director's bio is:

    Doctorate of Medicine, University of Guadalajara
    Interpersonal Communication Certificate UCSD
    Alcohol and Drug Counselor Certificate UCSD
    Advanced Intervention Certificate UCSD
    Practitioner of Addiction Medicine and CAADAC

    Much as I'm a fan of alternative medicine, this strikes me as people oversimplifying complexity to make a buck...
     
    Last edited: Feb 24, 2018
  12. Jesse2233

    Jesse2233 Senior Member

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    My impression is not they’re not claiming a cure, just saying it may help some people.

    I’d really like to see clinical trials of IV NAD+ while measuring other metabolites to make sure nothing suddenly breaks on another pathway

    It seems from clinical experience the dosages have to be high, slow, and continuous for maximum benefit
     
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  13. Learner1

    Learner1 Forum Support Assistant

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    ...for addicts? That's who has been getting the treatment you describe.
     
  14. Jesse2233

    Jesse2233 Senior Member

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    Addicts seem to be the largest clinical cohort, though patients with fluoroquinolone toxicity syndrome seem to make up a smaller niche with a smattering of CFS, Parkinson's, and a long tail of other conditions. The bulk of research has been in neurodegenerative mouse models. I'll try to dig up some dosing info on those.

    As usual with CFS our best evidence is conflicting anecdotal accounts and applied theory
     
  15. Learner1

    Learner1 Forum Support Assistant

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    Yes, some digging is in order...;)

    I haven't seen any. They're still answering questions and it seems like there's some complexity involved. This is what I've found so far:
     

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  16. Learner1

    Learner1 Forum Support Assistant

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    Also, I found this, which seems to be a 6 year old sales pitch to doctors about AMP. There are a few inaccuracies. Also, I read elsewhere AMP infusion should be doctor supervised as heart rate can be affected.
     

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  17. Jesse2233

    Jesse2233 Senior Member

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    Is AMP available anywhere in the US?

    I’d like to see OMF, Naviaux, or another group focusing on mito issues do a pilot NAD+ IV trial with consulting from Ross Grant or Charles Brenner. If suramin is stalled then why not?

    Maybe Naviaux and Dr Milgram could work together. NAD+ Treatment Center is only 20 minutes away from UC San Diego.

    My ideal trial...

    10 Canadian Consensus patients / 10 placebo controls
    10 days of 1500mg IV NAD+ dripped over 8 hours
    Careful monitoring for adverse reactions

    Before and after measures of:

    - Orthostatics
    - Daily step count
    - NKC function
    - CD38
    - Urine organic acids
    - Plasma amino acids
    - Lactate / pyruvate ratio
    - ADH
    - Celluar NAD+ (Use Brenner’s lab)
    - CMP / CBC
    - PET scan

    I thought of preinfusing with Meyers cocktails to avoid adverse reactions from methylation pathways becoming depleted but then you wouldn’t be able to tell if it was the Meyers or NAD+ infusions making people better
     
    Last edited: Feb 25, 2018
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  18. Learner1

    Learner1 Forum Support Assistant

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    My doc says it isn't, but he's worked with it in Canada, where it is. From what I've been reading, I'd think the FDA might be concerned about the cardiac effects.
    It would be interesting. However, loading more gasoline into a broken engine may not be wise. Mitochondria create free radicals that could be damaging.

    It might be prudent to start with lower doses and measure oxidative stress - glutathione, ALA, lipid peroxides, etc.

    NAD+ is likely to be helpful, but it will not cure infections, get rid of heavy metals, fix the microbiome, resolve metabolomic abnormalities or resolve autoimmunity.

    I also wonder how increasing it relates to eATP? Would it increase it? Or only if something else was creating eATP?
     
  19. Jesse2233

    Jesse2233 Senior Member

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    You may be right.

    To play devil's advocate, there may be a subset that truly embodies Dr Verwey's so called NAD Energy Deficiency Syndrome with their primary issue being low cellular levels of NAD+. This could be genetic, and may reach a tipping point when faced with some acute NAD+ depleting stressor (eg infection, stress, chemo, etc), which then casades and tanks other body systems.

    Or NAD+ may have therapuetic effects beyond its role as a metabolite. Dr Grant's research shows it can function as a neurotransmitter, turn on repair mechanisms (including DNA repair) via PARP, and help normalize CD38 activity which is involved in both immunological and metabolic functioning. Even if NAD+'s role is only to create more ATP that could help NKC function which could in turn fight latent infections, and it could help cellular detox systems remove heavy metals and other toxins.

    Intuitively it makes sense that you wouldn't want to run the body's metabolism too "hot" with what is essentially ATP rocket fuel. What that point is likely depends on the individual and the practitioner's skill, experience with NAD+ and discretion with the patient. I think this is why they run infusions at extremely slow rates.

    I wonder though if there is a certain deficit of NAD+ that takes time and a certain quantity to "fill". And that if there's an order to healing that occurs on different durations / dosages (e.g. immediate metabolic requirements vs longer term repair of neurologic mitochondrial damage).

    Of course this is all armchair speculation.
     
    Last edited: Feb 25, 2018
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  20. Jesse2233

    Jesse2233 Senior Member

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    From a 2012 Chinese paper on NAD+ and neurological treatment

     
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