In So Much Pain And Scared, Getting Worse Rapidly

[energyandstruct]

Do you guys think that concerns about methylene blue and superoxide/peroxynitrite formation are warranted? I want to try it. I am trying thyroid but also I need more... Something else to help with lactate/pain. I can't find my bottle of progestE right now which I would normally use

 

[Terma]

My doctor seems insistent on trying mestinon for CFS/dysautonomia. It's a drug that Peat suggests would cause side effects over time
It's a a reversible cholinesterase (ChE) inhibitor. I am skeptical of doing this, and I am already trying thyroid. But I do have to go along with what my doctor suggests to some extent. Do any of you suggest any specific things to watch out for with this drug or to do that would be protective, other than the generally protective things like thyroid, progesterone, etc?

Well, I'm not sure about the doses here, but make sure you tell your doctor if you drink tons of coffee: Caffeine Inhibits Acetylcholinesterase, But Not Butyrylcholinesterase
Lots of foods can contain these inhibitors too. You should treat ME/CFS and dysautonomia as two separate things, regardless.

 

[energyandstruct]

Well, I'm not sure about the doses here, but make sure you tell your doctor if you drink tons of coffee: Caffeine Inhibits Acetylcholinesterase, But Not Butyrylcholinesterase
Lots of foods can contain these inhibitors too. You should treat ME/CFS and dysautonomia as two separate things, regardless.

Very interesting! So I imagine I would have to lower my coffee dose if I went on these

 

[Terma]

I would do that regardless. Like I said earlier, you don't know for sure what part of the coffee is helping, because coffee can actually benefit stomach and bile. It helps to know what in the coffee is helping you the most, though I would suspect the caffeine meaning you could try cutting coffee out and using pure caffeine instead (I do way better on pure caffeine, but most people don't). [and the opposite, cut caffeine and use decaf]

The bigger issue could be unknown food compounds affecting acetylcholine and you have no idea which.

 

[Terma]

Anyway I think for ME/CFS people doing over 200mg caffeine/day long-term is a bad idea, I only did that briefly and it required very high doses of Magnesium to sustain it. (Caffeine + high Mg = good combo)

 

[haidut]

In addition to all the helpful replies I think Cardenosine seems like it would work synergistically with Methylene blue. Another user told me cardenosine was really helpful for his chronic fatigue syndrome. I think it's worth reading up on and considering.
I'm always curious about what works for others because it's such a broad, vague, poorly understood and frustrating syndrome. I wish I had known about Peat and that this forum had existed when I was hit by CFS in the late 90's. I'm not trying to push more supplements on you but honestly I'd try that combination if I still had CFS.

Thanks for suggesting it Blossom, good point. Methylene blue does help to speed up the oxidation of succinic acid and the movement of electrons through the ETC, so it should increase ATP synthesis even more when combined with Cardenosine. If you want to push this even further adding B complex vitamins is something to consider because they all help improve ATP synthesis and in fact there is an old Russian drug called cytoflavin which combined vitamin B2 with succinic acid due to this synergy for ATP synthesis. Cytoflavin also contains inosine and vitamin B3, so one combines Cardenosine, Energin and Oxidal one would get basically a Cytoflavin "on steroids"

 

[energyandstruct]

Thanks for suggesting it Blossom, good point. Methylene blue does help to speed up the oxidation of succinic acid and the movement of electrons through the ETC, so it should increase ATP synthesis even more when combined with Cardenosine. If you want to push this even further adding B complex vitamins is something to consider because they all help improve ATP synthesis and in fact there is an old Russian drug called cytoflavin which combined vitamin B2 with succinic acid due to this synergy for ATP synthesis. Cytoflavin also contains inosine and vitamin B3, so one combines Cardenosine, Energin and Oxidal one would get basically a Cytoflavin "on steroids"

Haidut what dose do you suggest for methylene blue? And do you think concerns about superoxide formation are warranted?

 

[energyandstruct]

The only intuitive obvious thing I can think of, is I'm really getting no sun, although I have a red light. Very little sunlight. I take vitamin d but doubtful that that has as much effect

 

[Terma]

For others and myself Vit D oral supps didn't work at all. Here's a reference thread: Vitamin D supplementation may help to prevent a range of viral and bacterial infections

 

[energyandstruct]

It's tricky for me to get outside as I've been almost bedridden and going up and down the stairs is very hard
so I haven't gotten any sunlight in awhile. I wonder if this exacerbates anything

 

[energyandstruct]

are UV lights okay, liek "Happy lights"?

 

[Terma]

That's what I did, got a UVB. I don't know if it's as good as aaron_c's, so if you have the money, maybe follow his advice. It has a bit more positive effect over time on me than red light does (incandescent or 840nm infrared). But I think it's probably good to just use both. The UVB is just a couple minutes 1-3 times per week, less than the red light.

 

[Terma]

are UV lights okay, liek "Happy lights"?

OH I didn't catch what you meant there. You mean the full-spectrum lights in hardware stores. NO, those don't substitute for UVB lights. Definitely expect to pay at least $150 USD minimum for a decent real UVB light, closer to $300 if you want something approved.

You could try this: B15 sunlamp vitamin d
and medically prescribed there's an expensive one approved by the FDA and some non-approved ones that doctors "prescribe" for psoriasis.
BUT I would go with what aaron_c used, I forgot what, and I can't ask him anymore, they put me on permanent moderation (the ME/CFS community administration past and present is a cluster**** of immaturity, I don't bother with it anymore; since recently I've been somewhat ME/CFS-symptom free I can finally afford that luxury), so I don't think I can ask anymore, and can't remember where he posted the model, so PM him.

 

[Terma]

The full-spectrum lights in hardware stores only emit some blue light that can modulate circadian rhythm, but unless you have diagnosed SAD and very sensitive to light it will probably do ******* for you.

 

[energyandstruct]

OH I didn't catch what you meant there. You mean the full-spectrum lights in hardware stores. NO, those don't substitute for UVB lights. Definitely expect to pay at least $150 USD minimum for a decent real UVB light, closer to $300 if you want something approved.

You could try this: B15 sunlamp vitamin d
and medically prescribed there's an expensive one approved by the FDA and some non-approved ones that doctors "prescribe" for psoriasis.
BUT I would go with what aaron_c used, I forgot what, and I can't ask him anymore, they put me on permanent moderation (the ME/CFS community administration past and present is a cluster**** of immaturity, I don't bother with it anymore; since recently I've been somewhat ME/CFS-symptom free I can finally afford that luxury), so I don't think I can ask anymore, and can't remember where he posted the model, so PM him.

this is great info, thanks

 

[Terma]

Don't forget to keep Mg intake high, between caffeine, UVB light, thyroid, all that is going to suck it dry. You do need Ca/K/Na in good proportions too so don't neglect them, and Na and Cl may significantly affect POTS/dysautonomia (try very high dose NaCl for dysautonomia if you haven't already), but Mg is the limiting factor for most of these things.

 

[energyandstruct]

I haven't been getting stomach pain like i was a few days ago but kind of throw up in my mouth sometimes after I try and increase food and I do think my digestion is incredibly, incredibly poor, wondering if i'm missing key enzymes or something. part of it is just general low metabolism but idk

 

[Terma]

All I can say is Vit D, TUDCA, Betaine HCl (maybe even other HCl things, even NaCl) may all help that, but it was never my primary issue and there are several people who have researched that more than me on this forum, phoenixrising, and hackstatis.

 

[Terma]

The full-spectrum lights in hardware stores only emit some blue light that can modulate circadian rhythm, but unless you have diagnosed SAD and very sensitive to light it will probably do ******* for you.

Oh nice just realized I found a loophole in this XenForo censor mod

[Edit: NOOOO they just fixed it 2 mins after I posted this, me and my big mouth]

 

[energyandstruct]

If it's possible to get covered by insurance, what's the peatarian take on IVIG/SCIG? I definitely had overall low immunoglobulin and several low subclasses plus a couple high subclasses (odd). a couple people suggested I might benefit from it. It may be possible to get covered by insurance and is one of the only standard medical treatments I think might help