Potential risks of thiol supps: IV glutathione, alpha lipoic acid (ALA), N-acetyl cysteine (NAC) etc

[Gingergrrl]

Thanks @justy and that is really helpful info. Had you ever tried liquid or liposomal glutathione and I am even more interested if you've ever tried it by nebulizer (prior to or in addition to the IV form?)

Did you have to test your urine with the sulfite strips prior to trying it? My sulfite strips just arrived (which is a requirement before my MCAS doc lets me try it in nebulized form) but we just moved yesterday so I have not had a chance to read the box yet.

Also, they are having trouble finding a pharmacy to make it and we asked my mold doc where she gets hers from but have not heard back from her yet. Once I get the prescription then I will do it the first time with respiratory therapist at hospital where my MCAS doc works.

I know it will happen eventually but it's in limbo until they figure out the right pharmacy. The nebulized form is supposed to help greatly with lung inflammation (which I have from mold exposure) and help the entire body (in theory even with the damage I suffered from Levaquin 4 yrs ago) so am feeling hopeful for this treatment once it starts and with the glutathione I can then try a mold binder.

I am impatient to start but like everything it takes time to arrange it properly. Am afraid my body won't tolerate it but really hoping it will (which I know you can relate to!!!)

 

[justy]

@Gingergrrl
No we didn't try any other form of Glutathione before and didn't test sulphite.

Being in Limbo is a phrase I understand - you have Mold, I have Lyme and co - and every treatment I try begins with weeks and weeks of worry, organising, usually results in only a few doses before I hit a bad side effect. Then I have to stop, back off a bit and then months before I retry anything new. Having MCAS from other health problems really sucks badly...I feel stuck in an endless cycle of seeing the Dr, being prescribed things, then not being able to tolerate them and starting again.

The Iv's were a way round that and really did work, but im not sure what now. Was supposed to take Sub Cut Gamma Globulin injections, but I had delayed increased itching that took two weeks to resolve after the last injection, so once again I have stopped the drug...

 

[maryb]

I tried liposomal Glutathione on the advice of a doctor - my liver labs went off after IV abx, I re-tested after 3 weeks of using IV Glut and they were back to normal. Don't think it agreed with me so didn't continue, but my liver tests have been okay since anyway.

 

[Gingergrrl]

@Gingergrrl
No we didn't try any other form of Glutathione before and didn't test sulphite.

Being in Limbo is a phrase I understand - you have Mold, I have Lyme and co - and every treatment I try begins with weeks and weeks of worry, organising, usually results in only a few doses before I hit a bad side effect. Then I have to stop, back off a bit and then months before I retry anything new. Having MCAS from other health problems really sucks badly...I feel stuck in an endless cycle of seeing the Dr, being prescribed things, then not being able to tolerate them and starting again.

The Iv's were a way round that and really did work, but im not sure what now. Was supposed to take Sub Cut Gamma Globulin injections, but I had delayed increased itching that took two weeks to resolve after the last injection, so once again I have stopped the drug...

@justy, I wanted to respond to this post and couldn't find it and hate it when I do that!

Yes being in limbo is the worst and I totally understand not being able to try treatments b/c of MCAS (whether triggered by Lyme, mold, or random immune system chaos.) I am still in the process of arranging this nebulized glutathione treatment between my two docs, finding the compounding pharm & dosage to make it how they want it, getting it set up with respiratory therapist, etc. I know everything moves slowly but I get impatient sometimes and want to speed up the process.

It was good to hear that the IV glutathione helped you and I am hoping that the nebulized form helps me once I finally get to try it. No worries about not trying the other forms or sulfite strips and was just curious. My docs both said the highest risks for side effects are if you have asthma which I don't (I have other breathing problems) so hoping that works in my favor. If the sulfite strips are positive, then I can't try it so I need to read the instructions and try them soon.

I am sorry to hear about the sub cut gamma globulin injections not working and hope your docs figure out an alternative for you. Hope you are doing better with the itching.

 

[LivingwithFibro]

I've started my first day of ALA heavy metal chelation.

Powdered a 600 mg tablet into 600 ml of water and took a tsp (around 4 mg) if it all goes well for the same round I should increase it to 8 mg, 16 mg, 32, 64, 128, 256, 512 and so on? you double the dose after every round if you are feeling okay?

Is it okay if I store the water in a plastic water? Will there be any reaction with the ALA and the plastic?

 

[TheChosenOne]

plastic water

What is plastic water?

My understanding is that it doesn't really matter.

 

[LivingwithFibro]

What is plastic water?

My understanding is that it doesn't really matter.

I meant the water in a plastic botter, lol...sorry, brainfog!

I'm not sure this method of division is actually accurate. The water is clear and the ALA is at the bottom of the bottle. It isn't distributed equally even if I shake it up really well.

 

[LivingwithFibro]

You can get 25 mg ALA capsules on iHerb.

Can you give me the name of the brand or link me to the product?

 

[Sidereal]

Can you give me the name of the brand or link me to the product?

It's this one: http://www.iherb.com/Kirkman-Labs-Alpha-Lipoic-Acid-25-mg-90-Capsules/58231

 

[Johnmac]

I have increased fairly robustly - sometimes even doubling. Sometimes, too, when sfx became strong, I had to scale down again.

But I've gone from 30mg to 300mg ALA now - it took 4 years.

I've never noticed the plastic in my bottle reacting with the ALA. I put DMSA or DMPS in there too, plus some lemon juice to fix the pH.

 

[PennyIA]

OK, just seeing this thread for the first time and I went... hmmm.. pretty sure I haven't had any negative impacts from my ALA; but seems like I share risk factors and thought I should take a look and see if I should switch my dosing up (as I know that something isn't right right now, but haven't figured out what to add/adjust/remove).

My ALA is ALAmax CR (controlled release) from Xymogen - w 400 mcg of Biotin and 600 mg of ALA; doctor prescribed.

Is the fact that this is controlled release the reason I can take one a day without adverse effects? Though now that I'm reading it, it does recommend twice a day dosage.... as I was thinking if the half-life is what it is, maybe even the controlled release might not cover me fully.

Does anyone have any experience with this supplement and have any suggestions? Sorry if this was already discussed, I'm trying to read through.

 

[Johnmac]

Cutler says that controlled release ALA doesn't work, last I read of him on the subject.

And that you need to take ALA 3-hourly round the clock to avoid mercury redistribution, which can cause unpleasant sfx.

 

[PennyIA]

Cutler says that controlled release ALA doesn't work, last I read of him on the subject.

And that you need to take ALA 3-hourly round the clock to avoid mercury redistribution, which can cause unpleasant sfx.

Well, I can certainly state that I'm unaware of any positive OR negative effects from it... so it very well could be that it's not giving me what I need and I need to explore taking another form.

Edited: I just put in an order for iHerb... probably won't manage full night time dispensing, but can try it around the rest of the clock and see if there's a difference, it's a reduction in dosage, but if the dose I was taking wasn't working anyway... well, we'll see. I may see any change it should mean it's actually getting into my system... as opposed to not, and if I get negative reactions I can try getting up for a bit to dose through the night until the worst of it is through.

 

[Johnmac]

You need to do it round the clock or not at all, according to Cutler. But while some people get very bad sfx from taking ALA irregularly or just daily, others don't.

No reaction can indicate that you don't have much of a mercury problem.

 

[Christopher]

On the contrary, that would severely worsen your gut dysbiosis and all other symptoms since many with ME/CFS have an overgrowth of sulfur and sulfate reducing bacteria in the gut which are mostly pathogens.

@Sidereal elsewhere you mention beetroot extract causing SRB dieoff. How were you able to tell that was happening?

 

[Sidereal]

@Sidereal elsewhere you mention beetroot extract causing SRB dieoff. How were you able to tell that was happening?

It's a hypothesis, based on H2S gas produced during those periods, plus other symptoms of die-off.

 

[Christopher]

It's a hypothesis, based on H2S gas produced during those periods, plus other symptoms of die-off.

Is that the sulfur smelling gas? I get that sometimes when I supplement sulfur or create too much sulfur, either with epsom salts or whey protein.

 

[Sidereal]

Is that the sulfur smelling gas?

Yep.

 

[PeterPositive]

On the contrary, that would severely worsen your gut dysbiosis and all other symptoms since many with ME/CFS have an overgrowth of sulfur and sulfate reducing bacteria in the gut which are mostly pathogens.

@Christopher
@Sidereal
This may be true. If so I am the exception to the rule. I had very bad dysbiosis 3-4 years ago, confirmed not only by the very evident symptoms, but also from multiple specific tests.

I started taking 500 and then 1000mg of oral GSH and I did improve, even the dysbiosis improved, with less abdominal pain and gut inflammation.

I think it could be worth trying, going slow and keeping an eye on symptoms. For me GSH was one of the very few things that have helped.

 

[Sidereal]

@Christopher
@Sidereal
This may be true. If so I am the exception to the rule. I had very bad dysbiosis 3-4 years ago, confirmed not only by the very evident symptoms, but also from multiple specific tests.

I started taking 500 and then 1000mg of oral GSH and I did improve, even the dysbiosis improved, with less abdominal pain and gut inflammation.

I think it could be worth trying, going slow and keeping an eye on symptoms. For me GSH was one of the very few things that have helped.

Sorry for the belated reply. By no means was I implying that is it normal to get dysbiosis from sulphur-containing vegetables or GSH. If you read the start of the thread, we are specifically referring to this small subset of patients who get markedly worse from GSH, even to the point of becoming bedridden. Some have terrible gut and other symptoms from thiol foods, often these are referred to as "CBS issues" around here.