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

[Lieselotte]

@Thomas It really depends who is doing it and what their protocol is, and most places do have their own way of doing things, especially with NAD+. I'm sure your infusion center has their own too, you should speak with them. NAD+ IV is not an easy IV, just read through this thread!

I have had it done where it's just NAD+ in saline and usually followed by a Myer's IV/push or something similar. I have also had it done where it's mixed with other vitamins/minerals. You would never drip it alone - it is already unpleasant diluted.

 

[Thomas]

@Thomas It really depends who is doing it and what their protocol is, and most places do have their own way of doing things, especially with NAD+. I'm sure your infusion center has their own too, you should speak with them. NAD+ IV is not an easy IV, just read through this thread!

I have had it done where it's just NAD+ in saline and usually followed by a Myer's IV/push or something similar. I have also had it done where it's mixed with other vitamins/minerals. You would never drip it alone - it is already unpleasant diluted.

Yeah I read through most of this thread and the infusions definitely don’t sound so pleasant. I’ve had my fair share of unpleasant infusions over the years with various medications and natural substances so I’d prefer not to have to unreasonably suffer another one haha. That is why I plan on making sure the local infusion Center here is fine with me requesting a very small dose to start (do you suggest 250mg or maybe something even lower to start?) and a slow infusion rate but not too slow. I can be there for a few hours but wouldn’t be able to handle an all day or 8 hour infusion as I’ve heard others have done. I also have IBS and an overactive bladder so being tied to an IV pole for a long time isn’t an ideal situation in the event I get a flare up in the middle of the infusion.

i still wouldn’t mind trying a small SQ injection at home first so I could tell if my body tolerated this without having to be sick at some infusion place away from the comfort and privacy of my own home. That might also save on upfront cost. But if SQ is not as good a way to determine if this would be a beneficial treatment or not I’m willing to try IV first.

 

[DrUniverse]

I tried 100mg NADH sublingual for a few days and definitly got an Energy boost.

 

[Lieselotte]

That is why I plan on making sure the local infusion Center here is fine with me requesting a very small dose to start (do you suggest 250mg or maybe something even lower to start?) and a slow infusion rate but not too slow. I can be there for a few hours but wouldn’t be able to handle an all day or 8 hour infusion as I’ve heard others have done. .

Oh, I see. I did 250mg my first go, but I was moderate-mild ME. If you are worse, maybe lower, like 150. Even if they don't go lower than 250mg, you could always just do half the bag and quit (or if it's taking too long you can just get whatever you can in a few hours). Everyone is so different it's hard to say how much to start with. Make sure you 'drop the kids off at the pool' beforehand as a precaution. Not to make you worry, but the IV makes me slightly nauseous and I feel it in my gut more than other places (your mileage may vary).

 

[Learner1]

Not to make you worry, but the IV makes me slightly nauseous and I feel it in my gut more than other places (your mileage may vary).

I second that. I have ended up vomiting on more than one occasion, and it took benadryl and slowing down the infusion speed to tolerate it. It does seem to stimulate the intestines - be ready to run for the bathroom!!

 

[Thomas]

Haha

Oh, I see. I did 250mg my first go, but I was moderate-mild ME. If you are worse, maybe lower, like 150. Even if they don't go lower than 250mg, you could always just do half the bag and quit (or if it's taking too long you can just get whatever you can in a few hours). Everyone is so different it's hard to say how much to start with. Make sure you 'drop the kids off at the pool' beforehand as a precaution. Not to make you worry, but the IV makes me slightly nauseous and I feel it in my gut more than other places (your mileage may vary).

I second that. I have ended up vomiting on more than one occasion, and it took benadryl and slowing down the infusion speed to tolerate it. It does seem to stimulate the intestines - be ready to run for the bathroom!!

Thanks for the tips! Sounds like quite the adventure. I’ll be making some calls to some local clinics this week to see what their protocols are like and cost.

 

[Learner1]

Sounds like quite the adventure. I’ll be making some calls to some local clinics this week to see what their protocols are like and cost.

Ask them where they would source the NAD+. I found a difference in harshness / tolerability with different compounding pharmacies. Additionally, I got the NAD+ along with other nutrients. I would get a mixed nutrient bag with B vitamins, vitamin C, a couple minerals and a couple aminos, then the NAD+ in a small bag, and then glutathione and molybdenum. We had tried putting the NAD+ in with the mixed nutrients, however it was just miserable the entire time, so it was a lot faster and pleasant to do the nutrients, then do the NAD+ in the small bag so it limited my misery, and then the glutathione which always makes me feel better. And I only did between 100 and 250 mg NAD+, which was a lot stronger than taking it orally. And the benefits lasted for about 36 hours. I definitely prefer doing the sublingual NMN, which I can control, and I don't have the nasty side effects with. But good luck, and let us know how you do!

 

[aquariusgirl]

so which compounding pharmacy is better? @Learner1 rner1

 

[Learner1]

so which compounding pharmacy is better? @Learner1 rner1

You'd have to see who is currently making it. I had to hunt around 2' years ago to find it after the old pharmacy stopped making it.

 

[Thomas]

Infusion clinics in my area that provide NAD+ infusions have varying protocols and pricing. Some were $1,000-$2,000 US per infusion!! but those were for higher doses. The one closest to my home was the most reasonable at $289 for a 250 mg infusion over 2 hours (adjusting the drip rate for side effects). They mix it in 500ml of saline. They are open to even lower doses and/or mixing in 1 litre of saline. They get it from a compounding pharmacy in Orlando Florida called Olympia. I checked them out online and they look legit.

I’m on the moderate side of severe so I’ll probably ask for 100 mg to start. I’ll also go with their suggestion of a 2 hour infusion and adjust the rate given any side effects. But I’m wondering for those that have done it if 2 hours is too quick? I guess I could just see how i feel and even stop the infusion if necessary as @Lieselotte suggested. Also @Learner1 I’m just doing NAD+ without additional bags of vitamins or glutathione to start as I like to introduce treatments one at a time so I can better assess what is helping me or not. Hopefully I can get this done within the next 14 days.

This clinic said they could also provide SQ injections for me so I’m torn between trying the IV first and risking a long and unpleasant experience and just trying a quick SQ injection. I’ll probably go with the IV though. But I’m so indecisive argh! Haha.

 

[junkcrap50]

so which compounding pharmacy is better? @Learner1 rner1

EDIT: Sorry. Deleted my comment.

 

[Learner1]

I’ll also go with their suggestion of a 2 hour infusion and adjust the rate given any side effects.

2 hours would be too quick for me for 500ml. Could take up to 4hrs. I've used a gravity drip vs a pump, which has a little dial to rotate and slow the speed. I use a pump for IVIG, but it's more difficult to adjust up or down.

 

[Thomas]

2 hours would be too quick for me for 500ml. Could take up to 4hrs. I've used a gravity drip vs a pump, which has a little dial to rotate and slow the speed. I use a pump for IVIG, but it's more difficult to adjust up or down.

So maybe I ask them to add the NAD+ to 1 litre of saline rather than 500 ml and slow it all down also. Sorry if I asked this already but would a 50 mg or 100 mg subcutaneous injection be a quick and less tortuous experience than a long IV? In other words are there less side effects with SQ while still being an effective delivery system before going full tilt IV?

 

[Learner1]

So maybe I ask them to add the NAD+ to 1 litre of saline rather than 500 ml and slow it all down also.

The length of the misery is directly correlated to the size of the IV bag. More diluted would likely reduce the symptoms, but it would probably take 4 hours to do that, with symptoms the entire time. I found doing it in a 100 milliliter bag done slowly with ivy Benadryl if I needed it was best.

Sorry if I asked this already but would a 50 mg or 100 mg subcutaneous injection be a quick and less tortuous experience than a long IV? In other words are there less side effects with SQ while still being an effective delivery system before going full tilt IV?

I have no idea. It's a good question, but definitely discuss with the pharmacist before it trying something like that.

Personally, I find that taking it sublingually, under the tongue, gets it right into the bloodstream, it's cheaper, more tolerable, and I can do it everyday, though the effect is less And instead of lasting 36 hours, It lasts maybe 12-16.. But, I have no nasty side effects. And, if I need to, I can adjust the dose by just taking more. I never take more than 250 mg in a day, though.

 

[Lieselotte]

So maybe I ask them to add the NAD+ to 1 litre of saline rather than 500 ml and slow it all down also. Sorry if I asked this already but would a 50 mg or 100 mg subcutaneous injection be a quick and less tortuous experience than a long IV? In other words are there less side effects with SQ while still being an effective delivery system before going full tilt IV?

I did a subQ injection of NAD before. I think it was 50mg? Anyways, I didn't feel much from it. I guess if you did injections everyday for a number of days you might feel a difference?

But, IMO the best way to see if NAD does anything for you is to do the IV. It's not gonna be super fun, but if the stuff works for you, it's amazing. ROI (return on inconvenience) is high. If it wasn't totally worth it, I wouldn't have come back for more!

My very first NAD IV was 250mg. I was doing pretty poorly and just came out of a hellish week. I think that one took me 2-2.5 hours and it was in 500mL.
I think 150mg in 500mL is reasonable. They can always adjust the drip speed to very slow, so don't be scared. I think it's worth a shot.

 

[aquariusgirl]

do CFS patients need to do the loading dose thing? several IVs in a row...?

 

[Thomas]

do CFS patients need to do the loading dose thing? several IVs in a row...?

Good question. And I’m not sure what the answer is yet. I guess everyone is different and once you try the first IV you’ll have a better idea if it intuitively feels good to continue for added benefits. But this is coming from someone who hasn’t tried it…yet. Still working out the details with the clinic.

 

[aquariusgirl]

also...wonder if the aminos at same time help ...and if we should avoid trytophan in any amino formulation. Sigh. so many questions

 

[Thomas]

My very first NAD IV was 250mg. I was doing pretty poorly and just came out of a hellish week. I think that one took me 2-2.5 hours and it was in 500mL.
I think 150mg in 500mL is reasonable. They can always adjust the drip speed to very slow, so don't be scared. I think it's worth a shot.

So this morning I went for my first infusion. I requested 150 mg instead of their starting dose of 250 mg. It was mixed in 500 ml of saline and the infusion lasted about 2 hours. I felt a tad bit of nausea but nothing too uncomfortable. I'm sure a higher dose would have been more noticeable in terms of side effects.

Also though I had to pee so damn badly that as the IV bag was approaching the end I asked the nurse to just let it all drip in so I could finish and use the restroom. That last shot made me feel all the horrible effects people had mentioned but it only lasted for a few seconds because the drip was over.

I would say overall the NAD+ infusion made me feel better today. It didn't move the needle very far but I had a touch more stamina and my vision was a little less blurry (I don't think it was just due to the 500 ml of saline because I've had just saline infusions before and they weren't as helpful). I guess my head and brain felt a little more "refreshed" if that makes sense. I plan on going back again soon for a 250 mg dose and if I tolerate that and it makes me feel good I may go higher.

So overall I'd say it was worth it. This clinic also offers IV taurine (anyone try that?) which sounds interesting to me, which I may explore after I get a better picture of what the NAD alone can offer me. Just like many other ME patients I've had good responses to various treatments initially only to have the effects stop working after a short time, so I'm remaining cautiously optimistic.

 

[Learner1]

do CFS patients need to do the loading dose thing? several IVs in a row...?

No, that's for addicts to make them feel better so they can kick the addiction. We need NAD daily over time to help us with energy.

also...wonder if the aminos at same time help ...and if we should avoid trytophan in any amino formulation. Sigh. so many questions

Many of us have IDO mutations. If you don't know your status, it might be wise to avoid tryptophan...

I felt a tad bit of nausea but nothing too uncomfortable. I'm sure a higher dose would have been more noticeable in terms of side effects.

Also though I had to pee so damn badly that as the IV bag was approaching the end I asked the nurse to just let it all drip in so I could finish and use the restroom. That last shot made me feel all the horrible effects people had mentioned but it only lasted for a few seconds because the drip was over.

That was a pretty big IV bag!

I would say overall the NAD+ infusion made me feel better today. It didn't move the needle very far but I had a touch more stamina and my vision was a little less blurry (I don't think it was just due to the 500 ml of saline because I've had just saline infusions before and they weren't as helpful). I guess my head and brain felt a little more "refreshed" if that makes sense. I plan on going back again soon for a 250 mg dose and if I tolerate that and it makes me feel good I may go higher.

Even though I found the infusions difficult, afterwards they did give me more energy and made my brain feel better for up to 36 hours.

So overall I'd say it was worth it. This clinic also offers IV taurine (anyone try that?) which sounds interesting to me, which I may explore after I get a better picture of what the NAD alone can offer me

Taurine is just one ingredient. But it and other nutrients work in synergy. These are the ingredients of the IV protocol that I got along with the NAD, which helped me to improve my function over time. The NAD just provides energy, the other stuff helps drive the body's biochemistry to repair and restore after a long illness. It's more than just taurine - using a single ingredient at a time leaves one vulnerable to bottlenecks as processes use up the ingredients they need to run - if you keep up a steady supply of one, you run out of the others... This is why many helpful interventions become less effective over time.

Sterile Water
Dexpanthenol (B5)
Pyridoxine (B6)
B-100 (multi-B)
NAD
Methyl B12
Hydroxyl-B12
5-MTHF
Riboflavin
Ascorbic Acid
L-Carnitine
Glycine
Taurine
M.I.C (methionine, inositol, choline)
MgSO4
Potassium
Selenium
MTE-5 (Chromium Chloride, Copper Sulfate, Manganese Sulfate, Selenium, Zinc Sulfate.)
Glutathione
Molybdenum