pandakid11 Posted February 14, 2013 Report Share Posted February 14, 2013 Hi I stumbled across some info that this supplement can stop OCD and PANDAS. Anyone try? Results? Link to comment Share on other sites More sharing options...
MomWithOCDSon Posted February 15, 2013 Report Share Posted February 15, 2013 Hi I stumbled across some info that this supplement can stop OCD and PANDAS. Anyone try? Results? Unfortunately, I think this might be a little bit of snake-oil peddling. Some of what's marketed as acetyl-gluthione is actually n-acetylceisteine (NAC), which you'll find many threads about here. NAC is an amino acid which is a precursor to gluthione and is supposed to be helpful in helping you body increase the production of gluthione inside the body. Meanwhile, according to Wikipedia (and acknowledging that it doesn't know everything -- but there are some sources cited for this entry): Raising GSH levels through direct supplementation of glutathione is difficult. Research suggests that glutathione taken orally is not well absorbed across the gastrointestinal tract. In a study of acute oral administration of a very large dose (3 grams) of oral glutathione, Witschi and coworkers found "it is not possible to increase circulating glutathione to a clinically beneficial extent by the oral administration of a single dose of 3 g of glutathione."[26][27] However, it is possible to increase and maintain appropriate glutathione levels by increasing the daily consumption of cysteine-rich foods and/or supplements.[28] Calcitriol, the active metabolite of vitamin D synthesized in the kidney, increases glutathione levels in the brain and appears to be a catalyst for glutathione production.[29] In addition, plasma and liver GSH concentrations can be raised by administration of certain supplements that serve as GSH precursors. N-acetylcysteine, commonly referred to as NAC, is the most bioavailable precursor of glutathione.[30] Other supplements, including S-adenosylmethionine (SAMe)[31][32][33] and whey protein[34][35][36][37][38][39] have also been shown to increase glutathione content within the cell. So you might be better off going after one of the precursors -- NAC or SAMe, for example -- rather than supplementing something that doesn't very well survive our digestive processes. Link to comment Share on other sites More sharing options...
pandakid11 Posted February 21, 2013 Author Report Share Posted February 21, 2013 The Acetyl form of Glutathione is supposed to bypass the stomach for better absorbtion. This was one person's experience: Note: Glutathione levels are low in kids with pandas. You are right, though. Directly supplementing glutathione will not work as stomach degrades it. The Acetyl version is supposed to bypass this. Person's experience: Anyone else? Within one week we saw subtle improvements that included better eye contact. Within two weeks his overall focus was better and my husband remarked that his responses were unprecedented. At the end of three weeks I received a call from his school. His 100% modification was reduced to 50%! Within seven weeks ALL of his PANDAS (the incurable disease) symptoms were completely GONE! I increased his dosage slowly. Every two to three weeks I added one more capsule. We started with one every morning for two weeks. Next he had one in the morning and another at night. Next he took one three times a day for another two weeks. Soon he took two in the morning and then two at night. It appeared that my son was returning from a long, long drought… he was eating well and gaining weight. On September 16, 2009 (one day short of nine months) I went in for his first parent – teacher conference of 4th grade. I was told that my son No longer qualified for services. Link to comment Share on other sites More sharing options...
MomWithOCDSon Posted February 22, 2013 Report Share Posted February 22, 2013 Well, based on that experience, it seems worth a try! I still have a question, though. When I Google "acetyl-glutathione" I get a myriad of responses, many of which are actually n-acetylceisteine or NAC and not specifically identified as "acetyl-glutathione." So, are acetyl-glutatione and NAC the same supplement, or are they actually different compounds? Link to comment Share on other sites More sharing options...
ThinkGutBacteria Posted February 22, 2013 Report Share Posted February 22, 2013 You were right the first time, Nancy. NAC is a precursor to glutathione. They are not the same compounds. There are (literally) thousands of studies showing or implying benefit of oral NAC in conditions like OCD, autism (irritability), anxiety, etc. By contrast there are next to ZERO studies on acetyl-glutathione, which, I have to say is extremely suspicious. I smell snake oil. Glutathione is probably better raised by something like NAC. I know of people at CpnHelp.com who take NAC religiously for their multiple sclerosis, believing it helps kill the chlamydia pneumoniae they think underlies their autoimmune condition. They say it helps (post Herx). But I have no personal knowledge or suspicion as to whether a PANS kid would benefit. I'd love to find out though if anybody tries it. Link to comment Share on other sites More sharing options...
powerofprayer Posted February 22, 2013 Report Share Posted February 22, 2013 http://clinicaltrials.gov/show/nct01172288 I posted this on the tics/TS board a couoke weeks ago. Posting it here toomsince this duscussion is on NAC. The above link is a trial right now using NAC as a possible treatment for tics (in TS). Link to comment Share on other sites More sharing options...
MomWithOCDSon Posted February 22, 2013 Report Share Posted February 22, 2013 You were right the first time, Nancy. NAC is a precursor to glutathione. They are not the same compounds. There are (literally) thousands of studies showing or implying benefit of oral NAC in conditions like OCD, autism (irritability), anxiety, etc. By contrast there are next to ZERO studies on acetyl-glutathione, which, I have to say is extremely suspicious. I smell snake oil. Glutathione is probably better raised by something like NAC. I know of people at CpnHelp.com who take NAC religiously for their multiple sclerosis, believing it helps kill the chlamydia pneumoniae they think underlies their autoimmune condition. They say it helps (post Herx). But I have no personal knowledge or suspicion as to whether a PANS kid would benefit. I'd love to find out though if anybody tries it. My son has been taking NAC for a couple of years now and, yes, we believe it helps with his OCD. There've been two trials now at Yale for using NAC to treat both treatment-refractory OCD and pediatric OCD. DH and I also started taking it this winter when we read some research declaring its efficacy in warding off and/or diminishing the impacts of the flu. Knock on wood, none of us has had the flu shot this year, nor has any of us come down with the flu, either! I love NAC! There are many reports, however, of it being problematic for some. Perhaps its a herxing reaction or a mis-allignment between NAC's characteristics and a "broken" methylation cycle; we've discussed both possibilities but have yet to see any definitive "answer." Link to comment Share on other sites More sharing options...
pandakid11 Posted February 22, 2013 Author Report Share Posted February 22, 2013 We will be guinea pigs on this one. It is acetyl glutathione. Talked to a chemist who said it makes sense. You were right the first time, Nancy. NAC is a precursor to glutathione. They are not the same compounds. There are (literally) thousands of studies showing or implying benefit of oral NAC in conditions like OCD, autism (irritability), anxiety, etc. By contrast there are next to ZERO studies on acetyl-glutathione, which, I have to say is extremely suspicious. I smell snake oil. Glutathione is probably better raised by something like NAC. I know of people at CpnHelp.com who take NAC religiously for their multiple sclerosis, believing it helps kill the chlamydia pneumoniae they think underlies their autoimmune condition. They say it helps (post Herx). But I have no personal knowledge or suspicion as to whether a PANS kid would benefit. I'd love to find out though if anybody tries it. Link to comment Share on other sites More sharing options...
Dedee Posted February 22, 2013 Report Share Posted February 22, 2013 We are using acetyl glutathione now. We have used NAC in the past to indirectly increase glutathione levels. Then I heard about acetyl glutathione which is relatively new (at least to me) and is supposed to be absorbed orally. We have seen good results from it. Unless it was just a coincidence that my daughter improved the same month that we started this supplement (I never discount anything). It seemed to help with her staying stuck on certain ideas and with her tantrums. It isn't cheap but I found a good sale at AllStarHealth on line. We only use it once a day but I have considered going up recently since we are seeing a herx reaction from a change in antibiotics recently. Let me know if you decide to use it and what sort of response you get. Dedee Link to comment Share on other sites More sharing options...
ThinkGutBacteria Posted February 26, 2013 Report Share Posted February 26, 2013 Isn't there some kind of PANS-specific treatment database we could start. With so many people trying so many things, it's hard to keep 'em all straight. Link to comment Share on other sites More sharing options...
trggirl Posted February 26, 2013 Report Share Posted February 26, 2013 (edited) Dedee, did your dd respond well to the NAC? Edited February 26, 2013 by Trg girl Link to comment Share on other sites More sharing options...
Dedee Posted February 26, 2013 Report Share Posted February 26, 2013 I can't really tell much difference when she takes NAC. She took it for about four months before my Integrative Practitioner switched her to ALA. She said the NAC had a tendency to increase yeast (I had never heard that before) and we had tons of trouble with yeast in the past. Right now we use both ALA and acetyl glutathione. My daughter is MTHFR positive and also has KPU so she clearly has methylation issues. Dedee Link to comment Share on other sites More sharing options...
LNN Posted February 26, 2013 Report Share Posted February 26, 2013 Isn't there some kind of PANS-specific treatment database we could start. With so many people trying so many things, it's hard to keep 'em all straight. The problem is that often, what's good for the goose isn't good for the gander. Nancy's son does really well with NAC. It's horrible for my daughter. Some do well on silymarin for liver support due to heavy antibiotic use, some are allergic to it. Some have genetic mutations (MTHFR, COMT, HLA-DR, SUOX....) that should guide both what supplements you use or avoid and in what order you should introduce them. It's a very individual puzzle. I think we share what works for our kids but always with the caveat that this is throwing spaghetti at the wall to see what sticks. You could develop a database and I think some of the Pandas researchers have discussed the idea. But I think it would need to contain a lot of personal info that might not be appropriate for a public forum. Link to comment Share on other sites More sharing options...
Allie Posted March 17, 2013 Report Share Posted March 17, 2013 Wellness Pharmacy sells a Lipo GSH, I found it very helpful to use with some Vitamin C when taking it. This is my favorite oral GSH But seems like the IV push is better, if you can afford it. Link to comment Share on other sites More sharing options...
Recommended Posts
Create an account or sign in to comment
You need to be a member in order to leave a comment
Create an account
Sign up for a new account in our community. It's easy!
Register a new accountSign in
Already have an account? Sign in here.
Sign In Now