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

[Valentijn]

Some have terrible gut and other symptoms from thiol foods, often these are referred to as "CBS issues" around here.

Except the people referring to them as "CBS issues" are wrong, because the CBS SNPs involved are not capable of causing issues, and most don't do anything at all.

 

[Sidereal]

Except the people referring to them as "CBS issues" are wrong, because the CBS SNPs involved are not capable of causing issues, and most don't do anything at all.

I know, hence the use of "scare quotes".

 

[Critterina]

@Critterina I honestly do not grasp the science behind any of this but I have a phenonemal doctor who is an allergist/immunologist and one of the few true mast cell/MCAS specialists in the US and I was so lucky to find him when I did as he is now closed to new patients.

I tried all kinds of meds and treatments prior to starting with him and the most helpful medication for me for MCAS is Ketotefin. I know I could probably eat more foods than I am now but am being incredibly cautious and add just a few new foods each weeks (all zeros or ones on the list.) I have not yet tried any food that is listed above a one. My most severe reaction was to Tartrazine (yellow #5) and FD&C and AZO food dyes which I suspect will be out for me forever.

The nebulized glutathione is so highly recommended for me by the mold specialist I am working with that I would have tried it back in June if not for the MCAS. She felt given my total picture it is only safe for me to try it in the hospital setting and it has been a long process to coordinate but I am very close now! As soon as it is called into the compounding pharm and I do the sulfite urine test strips, I can schedule an appt to try it.

@Gingergrrl ,
This is an old thread, but I was looking for someone who thought I had MCAS to tell them that now I have a doc who agrees with them. Now I see Ketotefin in your post - mine is being compounded...in fact let me go get it at the pharmacy before it closes. I have a 3-step program. PM me with your great doc if he is still around. I'm seeing someone who is a fellow and may leave in June.

 

[MeSci]

Just want to post this in case it is of any use to anyone else.

I took 3 doses of about 625-650 mcg biotin over a few days in 2016, when I think I was also taking 200 mg alpha-lipoic acid and 250 mg acetyl-l-carnitine a day. I'd been taking this since 2012.

It appears to have put me into a really weird state, possibly related to amalgam fillings (I had a lot, and lost some earlier). I come out of it at times to varying degrees, usually in the evening. It put me in hospital for 6 days. I was not with it at all.

I was already feeling low. I'm not taking biotin now since it happened, or alpha-lipoic acid and acetyl-l-carnitine, although I've occasionally tried the latter combination again. I don't think I'll try the latter until I'm sure I've got rid of all the amalgam - waiting about 2 years so far to register with a dentist!

I've posted elsewhere about it.

 

[Gingergrrl]

@Gingergrrl, This is an old thread, but I was looking for someone who thought I had MCAS to tell them that now I have a doc who agrees with them.

I'm not sure if you meant you were trying to find me specifically re: MCAS (and I remember discussing histamine intolerance issues with you a few years back). In any case, I am glad that you have found a good doctor and that is great news!

Now I see Ketotefin in your post- mine is being compounded...in fact let me go get it at the pharmacy before it closes. I have a 3-step program.

I hope you were able to pick up your Ketotefin and that it will work well for you. Ketotefin was literally the med that began to turn things around for me after I had lost hope that I would never be able to eat food again without stage 2 anaphylaxis (after I was no longer able to tolerate the Benadryl injections in 2015). I am in remission now from other treatments but I don't think I would have lived long enough to even try those treatments without finding Ketotefin (and another med, Atarax) that saved me back in 2015.

I was curious, what is your 3-step program?

PM me with your great doc if he is still around.

Sadly, he is retiring within the next year and is no longer taking any new patients (and I have asked on behalf of several people). I am happy to PM you his name if you want it but he is no longer taking patients b/c he'll be retiring which is a bummer (for myself as well )