aquariusgirl
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anyone else notice derealization improve with NAD, and niacin plus melatonin?
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:@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:
- Glutathione
- BCAAS
- NAD+ or NMN
- Hydrocortisone
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.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.
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.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?
125-250mg NMNWould you mind sharing what dose of the others helps you the most?
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.)Thanks for your help
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).@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.
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 liquid125-250mg NMN
1-3g Setria glutathione
1g NAC
2.4-4.8g BCAAs (2:1:1 ratio)
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...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.
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.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).
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.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 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 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...
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?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?
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.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.
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?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.
C and B5 are essential for adrenal function. I've taken between 500mg and 2g of Thorne pantethine over time.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.
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.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
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.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.
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.Thanks, I'll look at NT factor - @Learner1 did you notice a clear effect from adding this in?
Sounds good.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.
Thanks, yes I want to keep an eye on the hormones, esp since my testosterone is apparently low-ish via blood testing.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?
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.
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.
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.
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.
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.
My brother took nad+ sublingually in high doses and never noticed any positive effects. Do you think it's worth it to try it iv as that is absorbed more?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.
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.
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.
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.)