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

[aquariusgirl]

anyone else notice derealization improve with NAD, and niacin plus melatonin?

 

[Learner1]

I don't use niacin, just 150mg NAD or NMN and 10mg melatonin daily. I don't have derealization.

 

[GlassCannonLife]

@Learner1, did you find that you could use NAD infusion to "rescue" from a crash/PEM?
Not sure if it would be useful or cause more over-exertion from the stimulation.

 

[Learner1]

@Learner1, did you find that you could use NAD infusion to "rescue" from a crash/PEM?
Not sure if it would be useful or cause more over-exertion from the stimulation.

NAD always gives me more energy. I find taking it sublingually daily helps me function better and avoid PEM much of the time. When I have PEM, there are 4 things I try:

1. Glutathione
2. BCAAS
3. NAD+ or NMN
4. Hydrocortisone

 

[GlassCannonLife]

NAD always gives me more energy. I find taking it sublingually daily helps me function better and avoid PEM much of the time. When I have PEM, there are 4 things I try:

1. Glutathione
2. BCAAS
3. NAD+ or NMN
4. Hydrocortisone

Ah ok great, thank you. I have some pure powder I might try sublingually. Doing all three of the others already at the moment (plus high dose pregnenolone) so hopefully this will help.

For PEM, do you mean that you do the NAD+ sublingually but in a higher dose than your normal daily routine, or you do an infusion of it?

Would you mind sharing what dose of the others helps you the most?

Thanks for your help!

 

[Learner1]

Ah ok great, thank you. I have some pure powder I might try sublingually. Doing all three of the others already at the moment (plus high dose pregnenolone) so hopefully this will help.

For me, I think there are 2 things going on, though interrelated. I think my mitochondria have significant oxidative stress and resources they need get depleted.

BCAAs support cardiac and skeletal muscle mitochondrial biogenesis, prevent oxidative damage, enhance physical endurance, and are involved in catabolic processes in the mitochondria. If you push the mitochondria, BCAAs, particularly isoleucine and leucine get depleted.

The glutathione helps with the oxidative stress, as well, though it's best taken whole on a regular program of B vitamins, magnesium, and other antioxidants like C, which recycles it, and E and alpha lipoic acid, all part of Lester Packer's antioxidant network.

NAD and NADH recycle each other, with NADH actually giving up the H+ which goes through the mito membrane to create energy. Under stress, the NADH/NAD ratio rises, which is not good. For some reason, adding more NAD+ helps reverse the bad ratio which facilitates more energy production. I take NMN as it takes one more conversion to get to NAD+, and instinctively, it feels like making my body have to convert more is useful, though I did just fine with NAD+. I've also experimented with NADH, which was expensive for the dose I need and doesn't help normalize the NADH,/NAD+ ratio, and NR, which does absolutely nothing for me - it has to go through more conversions to get to NAD+ and I believe my mutations on the NMRK genes prevent me from doing it.

As for pregnenolone, for me, it went right to making estrogen, E1, and I became miserable fast. It's a little unpredictable, I've known other female patients for whom it converts to too much testosterone. I have done well with using a DUTCH test (dried urine test of comprehensive hormones) to determine which hormones I am deficient in, and I do well on a combination of small doses of DHEA, testosterone, estriol, and progesterone.

For PEM, do you mean that you do the NAD+ sublingually but in a higher dose than your normal daily routine, or you do an infusion of it?

I take 125mg of sublingual NMN every morning, with an additional 62.5mg-125mg if I've had a higher activity or am dragging in the afternoon. Sometimes I take it before I do more activity than usual. Aiming for a consistent level is best, rather than yoyoing Too much can potentially drive a nascent cancer, not something I want to tangle with. I did NAD+ infusions for 1 months, but found the unpleasant immediate side effects, expense, and difficulty of a consistent supply to make it undesirable for the 36 hour effect I got, so after improving to a point, I did continued them and continued just in the NMN I'd been taking all along. I will say 125mg of sublingual NAD+ is more subtle than the IVs, but I got more consistency out of the sublingual.

Would you mind sharing what dose of the others helps you the most?

125-250mg NMN
1-3g Setria glutathione
1g NAC
2.4-4.8g BCAAs (2:1:1 ratio)

Four other things to consider:

Lipid replenishment with NT Factor. ME/CFS patients tend to have huge oxidative and nitrosative stress. Antioxidants help to lowe in, but they do damage mitochondrial membranes. Garth Nicolsons lipid replenishment protocol can help rebuild membranes as mitochondria recycle and pick up new material every 6-8 weeks. I use 2-3 scops daily.

Carnitine, which allows fats too be brought into mitochondria for fatty acid oxidation needs to be adequate - in many of us, it's not.

T3 (and T2) thyroid hormones work in the mitochondria. Ensuring T3 is adequate, by measuring FT3, FT4, rT3, TPO and thyroglobulin antibodies AND paying attention to hypo (or hyper) symptoms, NO MATTER WHAT TSH IS, and medicating with T4 (or, better yet, T4, as not everyone converts T4 to T4 well) if FT3 is low or one has hypo symptoms can make a big difference in function.

Adrenal function - as our bodies are stressed, and particularly get depleted in nutrients, our adrenals have trouble keeping up, so ensuring vitamin C and B5 (pantethine) is adequate for adrenals to use, then supplementing with replacement dose hydrocortisone (2-30mg daily) if your morning cortisol, 24 hour saliva or urine cortisol are low, or ACTH doesn't respond adequately on an ACTH stim test. The Clinicians Coalition guide days not to supplement hydrocortisone in 3 places, but my ME/CFS doc (a Coalition member) prescribes it as for others - but I think the more conservative docs won out on this point, to the detriment of many patients.

Thanks for your help

You're welcome.😃 Let us know how you progress... It's not instant, but trying these strategies can help, unless you have other significant issues that have not been addressed (mold or other toxicity, infections, autoimmunity, spinal issues, etc.)

 

[Lieselotte]

@Learner1, did you find that you could use NAD infusion to "rescue" from a crash/PEM?
Not sure if it would be useful or cause more over-exertion from the stimulation.

Just my experience, but the IVs can help with a crash. My first few...they resurrected me from the dead. Now, even in a crash, no dramatic effect, they just build me up slowly. Not sure why the difference. I don't think they would be over-stimulating, just don't do too high of a dose (250mg or less).

125-250mg NMN
1-3g Setria glutathione
1g NAC
2.4-4.8g BCAAs (2:1:1 ratio)

The Setria capsules? I was led to believe that the liposomal glutathione is the only one that will get enough in your system. I would love to not take the rotten egg liquid
I second the BCAAs. If you need them, you'll be able to tell! Felt like electricity through my body the first time I took them (not kidding). Not any more, though...

As for pregnenolone, for me, it went right to making estrogen, E1, and I became miserable fast. It's a little unpredictable, I've known other female patients for whom it converts to too much testosterone. I have done well with using a DUTCH test (dried urine test of comprehensive hormones) to determine which hormones I am deficient in, and I do well on a combination of small doses of DHEA, testosterone, estriol, and progesterone.

I took Progesterone cream for a couple years and while blood tests showed I was good, saliva showed my Testosterone thru the roof. Now, years later, my doc says my Testosterone is low-ish, DHEA is low, SHBG is high (blood test). DHEA makes me break out a lot, so can't really take that. Did a Dutch test and everything was within the normal Dutch ranges. The hormone stuff has me stumped, and since I learned I'm sensitive to hormones I'm very cautious. I'm assuming that the Dutch to be 'more correct' than the blood tests and I should just not worry about hormones for the time being? Maybe I'll start a separate thread on this at some point...

 

[Learner1]

Just my experience, but the IVs can help with a crash. My first few...they resurrected me from the dead. Now, even in a crash, no dramatic effect, they just build me up slowly. Not sure why the difference. I don't think they would be over-stimulating, just don't do too high of a dose (250mg or less).

Well, you probably caught up. It's a lot cheaper to do the oral and just do it daily. You can't do an IV everyday, or at least I can't.

The Setria capsules? I was led to believe that the liposomal glutathione is the only one that will get enough in your system. I would love to not take the rotten egg liquid

The capsules work just fine I've tried the icky sulfur liquid and much prefer the capsules. I've definitely had a fairly immediate effect of reversing PEM with them, so I'm convinced they work. I mentioned Setria, because it seems to be a branded ingredient that's the same across different formulations. NutriFlair sold at Walmart is the cheapest Ive found.

I second the BCAAs. If you need them, you'll be able to tell! Felt like electricity through my body the first time I took them (not kidding). Not any more, though...

I think if you're getting that dramatic an effect, You were probably extremely depleted. Better to build up to a state where you don't notice it so dramatically but its feeding your body consistently. I believe that PEM is less of a factor if one is nutritionally replete.

I'm assuming that the Dutch to be 'more correct' than the blood tests and I should just not worry about hormones for the time being?

Absolutely. Ive done it 4 times with Quest and LabCorp in between And I get frustrated with the conventional labs, which are only spot checks, and don't give any perspective. DUTCH has been extremely useful for me in troubleshooting my hormone imbalances I'm tweaking to get a good combo going. I think if it says you're fine, your problems are likely elsewhere, but good to check once in a while. How's your thyroid?

 

[GlassCannonLife]

Thank you very much for that @Learner1! Very detailed. Also thank you for sharing your experience @Lieselotte.

I have just been taking pure reduced glutathione powder with a teaspoon whenever I remember (ideally 3 times a day, roughly 1 g each but I keep forgetting doses ). I used to do it injected and also tried liposomal I can dose it so much higher orally that any benefit of the other two forms is lost because of that.

Eg max concentration for injection is 200 mg/mL and I already inject around 2-3 mL daily so I can't comfortably add much on top of that as I run out of injection sites.

Pregnenolone for me seems to rescue adrenal function a lot, so I have been staying at 6-8 mg hydrocortisone in the morning to try and avoid suppression and just increasing the pregnenolone from 50 mg (my normal daily amount) to a current max of 250 mg (on the worst day) to avoid adrenal insufficiency symptoms. I do notice that if I take too much when I don't need it, I get insomnia and start getting a bit of irritation in my nipples (male, from the excess estrogen conversion). The more ill I am though, the higher I can go without issue, which makes it seem like it feeds through into whatever pathway is lacking the most.

I'll definitely increase my B5 intake though! That's very interesting, I remember seeing it somewhere on here but I haven't looked into it properly yet.

My thyroid always tests quite well, mid to high fT3 and fT4 and TSH between 1.6 and 2.2. I did have low urinary iodine recently though and I have cold extremities all the time so who knows what's really going on there.

On the other hand, adrenals always test barely within the normal range for some reason. Had a short synacthen test done a couple of years ago and managed to barely pass that as well so officially I'm "fine" lol.

Thanks, I'll look at NT factor - @Learner1 did you notice a clear effect from adding this in?

Yeah I really need to do a DUTCH test, was also planning on getting a genova ION panel done once I'm out of this flare up.

 

[Learner1]

have just been taking pure reduced glutathione powder with a teaspoon whenever I remember (ideally 3 times a day, roughly 1 g each but I keep forgetting doses ). I used to do it injected and also tried liposomal I can dose it so much higher orally that any benefit of the other two forms is lost because of that.

Eg max concentration for injection is 200 mg/mL and I already inject around 2-3 mL daily so I can't comfortably add much on top of that as I run out of injection sites.

The most I take orally is 2.4g per day. When I get it IV, I get 3g in the infusion. At these doses, my doctors have always added molybdenum, needed for the transsulfuration pathway.

The other thing to keep in mind is that antioxidants work as a network with the different antioxidants recycling each other. As each antioxidant is used, it becomes a pro-oxidsnt, so overdoing it can actually backfire and cause more oxidative stress. A balance of antioxidants is best - with C, E, ALA, and glutathione, in particular.

The Antioxidant Miracle by Lester Packer I'd a worthwhile book to read and think about.

Pregnenolone for me seems to rescue adrenal function a lot, so I have been staying at 6-8 mg hydrocortisone in the morning to try and avoid suppression and just increasing the pregnenolone from 50 mg (my normal daily amount) to a current max of 250 mg (on the worst day) to avoid adrenal insufficiency symptoms. I do notice that if I take too much when I don't need it, I get insomnia and start getting a bit of irritation in my nipples (male, from the excess estrogen conversion). The more ill I am though, the higher I can go without issue, which makes it seem like it feeds through into whatever pathway is lacking the most.

I think pregnenolone is unpredictable and can be dangerous. It's better to ensure testosterone and cortisol/hydrocortisone are adequate. For me, DHEA helps testosterone, but it might not be right for you. Have you had SHBG measured?

The attached discussed use of hydrocortisone. Holtorf says 15mg or less has little risk, but what I've found in practice is that giving the body enough hydrocortisone to function allows everything else to work better. I was on 30mg in divided doses, then 25, then 20, then 10, then 5, then 2.5, then 2 then 0mg. As I solved my other problems, I needed less. A good clue is weight, especially around ones midsection. I slowly gained weight, then realized my cortisol level was actually a little high in the afternoons. As I cut my HC dose, the 17lbd I'd gained disappeared on the same diet throughout. So, watching your wright and waist circumference is wise, it'll tell you what you need. As we as crashing. I found if I was crashing, I needed HC, so the game was to take only as much HC as I needed to not crash but not enough to gain weight.

Have you had an ACTH stim test? My ME/CFS specialist said my results were abnormal - the rise was under what was expected, never though the endo who ran the test thought it was fine. The difference is endos expect full blown Addison's, which is not us typically, were just a bit short of cortisol because we have the other aspects of out illness dragging us down.

I'll definitely increase my B5 intake though! That's very interesting, I remember seeing it somewhere on here but I haven't looked into it properly yet.

C and B5 are essential for adrenal function. I've taken between 500mg and 2g of Thorne pantethine over time.

My thyroid always tests quite well, mid to high fT3 and fT4 and TSH between 1.6 and 2.2. I did have low urinary iodine recently though and I have cold extremities all the time so who knows what's really going on there

You might find the Thyroid Patients Canada blog and FB Group. Tanya Sonia Smith does an amazing job of analyzing reams of thyroid research and explaining it in laymen's terms, including a lot of weird problems most endos miss.

On the other hand, adrenals always test barely within the normal range for some reason. Had a short synacthen test done a couple of years ago and managed to barely pass that as well so officially I'm "fine" lol.

They we're looking for Addisons, which you didn't have. Our issues are more subtle. Either go by DYTCH or another 24 hour saliva or urine cortisol test, and adjust medicate based on that.

Thanks, I'll look at NT factor - @Learner1 did you notice a clear effect from adding this in?

It's a long term thing. Mitochondria live around 6-8 weeks, then are destroyed and recycled. The game is to have the ingredients ready for when they recycle, so as the new ones form they pick up the lipids in the NT Factor to manufacture new membranes. It takes a few rounds of recycling to really improve. I wrote to Nicolson saying 2 scoop wasn't making much progress - he wrote back and said to try 2-3. It took 2 years to really help, and I still take some for maintenance.

Yeah I really need to do a DUTCH test, was also planning on getting a genova ION panel done once I'm out of this flare up.

Sounds good.

 

[Lieselotte]

I think if it says you're fine, your problems are likely elsewhere, but good to check once in a while. How's your thyroid?

Thanks, yes I want to keep an eye on the hormones, esp since my testosterone is apparently low-ish via blood testing.
My thyroid...I may need to check out the Thyroid Canada FB group as I may have issues here still. I take desiccated thyroid. TSH usually below 1, however FT3 & FT4 usually on the low end of normal. They used to be always below the normal. I think chelation (or everything else I'm doing) has brought them into the low normal range. Many endos have been frustrated by my thyroid labs lol. The more thyroid I take, it just pushes my TSH to zero, while the FT3/FT4 barely budge.

Other than thyroid, possible mycotoxins to still get rid of, possible some metals left, possible nasal colonization. I can only do 1400mg glutathione via IV. If I do 3g I am nauseous/tired/headaches for 2 days after. So working my way up with glutathione too.

 

[GlassCannonLife]

The most I take orally is 2.4g per day. When I get it IV, I get 3g in the infusion. At these doses, my doctors have always added molybdenum, needed for the transsulfuration pathway.

The other thing to keep in mind is that antioxidants work as a network with the different antioxidants recycling each other. As each antioxidant is used, it becomes a pro-oxidsnt, so overdoing it can actually backfire and cause more oxidative stress. A balance of antioxidants is best - with C, E, ALA, and glutathione, in particular.

The Antioxidant Miracle by Lester Packer I'd a worthwhile book to read and think about.

Thanks, I'll look the book up. I'm currently on a few grams of C daily, mixed tocopherol/tocotrienols, and R-ALA. Also trying to eat minimal processed oils. But that's good, I won't go overboard on the glutathione. I haven't ever had strange sulfur processing issues (I hear that indicates molybdenum deficiency) but you're probably right that adding some molybdenum in when having high dose glutathione is a good idea.

I think pregnenolone is unpredictable and can be dangerous. It's better to ensure testosterone and cortisol/hydrocortisone are adequate. For me, DHEA helps testosterone, but it might not be right for you. Have you had SHBG measured?

What about pregnenolone makes you think it can be dangerous? That it can backfill so many different pathways? I have tried DHEA supplementation before but it subjectively doesn't do anything, while pregnenolone seems to boost my function within 30 min or less or taking it (sublingual is faster/better than oral).

Yes, have had all sex hormones tested and they all look good. Surprisingly enough my testosterone is actually better than it was when I was healthy..! I assume it must be the fact that I now hold my vitamin D at ideal levels and supplement zinc and micronutrients a lot.

The attached discussed use of hydrocortisone. Holtorf says 15mg or less has little risk, but what I've found in practice is that giving the body enough hydrocortisone to function allows everything else to work better. I was on 30mg in divided doses, then 25, then 20, then 10, then 5, then 2.5, then 2 then 0mg. As I solved my other problems, I needed less. A good clue is weight, especially around ones midsection. I slowly gained weight, then realized my cortisol level was actually a little high in the afternoons. As I cut my HC dose, the 17lbd I'd gained disappeared on the same diet throughout. So, watching your wright and waist circumference is wise, it'll tell you what you need. As we as crashing. I found if I was crashing, I needed HC, so the game was to take only as much HC as I needed to not crash but not enough to gain weight.

They we're looking for Addisons, which you didn't have. Our issues are more subtle. Either go by DYTCH or another 24 hour saliva or urine cortisol test, and adjust medicate based on that.

Thank you, I'll have a look at the article - I think I may have seen it before, I've looked through what I could find from Holtorf. I think generally the consensus seemed that if you stay below 10 mg daily you won't cause any adrenal suppression but can have a mild benefit - I understand your approach is different though.

So what would you adjust your hydrocortisone based on? Target blood/saliva/urine levels, or your crashing (too little) vs weight gain (too much)?

My endocrinologist is quite ME-aware but yes it was an official test to check for Addison's. I'm not sure if he'd give me enough hydrocortisone to treat myself in that way but I can ask him when I next see him. He's fine with scripting it for crash days so maybe he'll agree.

You might find the Thyroid Patients Canada blog and FB Group. Tanya Sonia Smith does an amazing job of analyzing reams of thyroid research and explaining it in laymen's terms, including a lot of weird problems most endos miss.

Ah yes I love that site! I actually wrote with Tanya back and forth a few times when we were figuring out my wife's thyroid issues. She has an amazing understanding of thyroid health.

It's a long term thing. Mitochondria live around 6-8 weeks, then are destroyed and recycled. The game is to have the ingredients ready for when they recycle, so as the new ones form they pick up the lipids in the NT Factor to manufacture new membranes. It takes a few rounds of recycling to really improve. I wrote to Nicolson saying 2 scoop wasn't making much progress - he wrote back and said to try 2-3. It took 2 years to really help, and I still take some for maintenance.

Ok cool. I currently take Now foods sunflower lecithin, and the mixed E and diet I mentioned above. I did hear from Chris Masterjohn that it can take years to swap out undesirable fats, which makes sense. I will persist with doing it in that case and see if I should also add this in.

Thanks for all of your help!

Oh, while I've got you, I hope you don't mind me asking - you did valcyte for a long time at quite high doses. Was this after you had reached remission from your cancer? Were you worried about its carcinogenicity at all?

Can you recall what viral tests you had come back positive prior to the therapy? Was it positive IgM or PCR or some other type of test? I just did a quick IgM/IgG test for CMV, VZV and EBV in the depth of this flare to see if I could catch some reactivation, but all of the IgMs have come back negative.