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Friday, 22 August 2014

NAC for Long Term Use in Autism


One of the post popular subjects on this blog is the use of NAC (N-acetyl cysteine) for autism. There are numerous earlier posts explaining how and why it works.

Just look up NAC in the index by subject; there are 19 posts, for those with plenty of time. (the labels function just gives the recent posts)

NAC was shown in a clinical trial at Stanford to be an effective treatment for autism.  You might have expected that this would be quickly followed by further research, but since NAC is widely available as a cheap supplement, there is not much financial incentive for further research.  Without that research, mainstream doctors will never prescribe it.


Beginner's guide to NAC 

Highly respected researchers have shown that in many types of autism, oxidative stress is present and considered that NAC might be an effective therapy.

In the past, some DAN-type doctors have used NAC, but the Stanford trial was the first mainstream trial for autism.

For oxidative stress in asthma and in particularly severe types, like COPD, NAC has long been used.  Oxidative stress stops asthma drugs from working, which is why NAC is used.

In autism, as in asthma, it appears that oxidative stress is a long term condition.  NAC controls oxidative stress, but it does not cure it.

Just as asthma research has shown that smoking triggers irreversible oxidative stress, the same appears to be true for autism.  NAC will rebuild the level of body’s own antioxidant, GSH, but as soon as you stop taking the NAC, oxidative stress reappears.  Many years after people quit smoking, the asthma research showed that oxidative stress remains, and so the asthma drugs do not work.


Will NAC be effective?

In cases of classic autism, NAC has been effective for almost everyone who has given me feedback.

The effect is usually noticed as being a reduction/elimination of stereotypy/stimming and obsessive compulsive behavior.  Other people have seen a reduction in aggression and even in sleeping problems.  The reduction in stereotypy makes way for good behaviours, like increased speech and better mood.

Some types of autism are not associated with oxidative stress; anecdotally, it seems to be some regressive types of autism.

When effective, NAC should change behaviour within a couple of days.  Equally, when you stop taking it, the same behaviours should return with a day or two.  This is a good way to check that you are not just imagining the effect.


NAC has “stopped working”

After a period of months you may find, as I did, that NAC has “stopped working”.  If this happens, most likely it is not that NAC has stopped working, but rather that something else has started working and is making the autism worse.  You need to identify what has happened, treat it, and then NAC will appear to start working again.
Possible reasons for NAC appearing to stop working include:-

·        Effect of an allergy (pollen or food)
·        Flare-up in an existing auto-immune disease
·        New auto-immune condition

For example, if the person has a history of GI problems and these get worse just as NAC “stops working”, you would know what to do.


NAC dosage

From what people tell me, in a three year old children 600mg once per day is effective.

In older children higher doses, going up to 2,400 mg or 3,000 mg are being used. 

There will come a point where increasing NAC will have no further behavioural effect and then there will be more likelihood of side effects.

You can experiment to find the lowest effective dose.  It is logical to split larger doses over the day, to maximize effectiveness and minimize any side effects.

In my son (33kg/73 lbs) I give 1,200mg at breakfast, 600mg at lunch and 600mg in the evening.  I started about 20 months ago.


Quality of NAC

There is both cheap NAC in gelatin capsules and foil-packed NAC.  Over time NAC will react with the air and lose its potency; as this happens a smell of rotten eggs is produced.  The foil-packed NAC is called Fluimucil in Europe and PharmaNAC in the US.


Side effects

Almost everything has side effects of some kind, but in the doses used for autism, NAC does not seem to cause anything troubling to occur.  

NAC will also reduce homocysteine, which is linked to various heart problems in adults.  As an antioxidant, NAC will also help remove any metals that should not be present. NAC has also been shown to improve outcomes in some types of cancer.








104 comments:

  1. Hi Peter,

    I had some success using the NAC for my 3 years old daughter. It helps with repetitive behavior and self stimulation. The thing is that I have recommended it to a friend, father of a 3 yo autistic daughter, non verbal, who is very agressive with self mutilation, hair pulling and GI problems. He said to me that NAC made her more agressive or so it seems to him. They have tried an antihistaminic for a few days but to no avail. What do you think? Can NAC be the culprit for the surge of aggressive attitude?

    ReplyDelete
    Replies
    1. Anything is possible, since "autism" is not a biological diagnosis. If there is oxidative stress, as in most autism and also schizophrenia, then NAC will help. You can have autism with entirely different causes and there is no oxidative stress.

      Since your friend has a child with GI problems, I think that this is the aggravating factor. So he/she first has to solve this problem. When my son's allergy is triggered, NAC appears not to work and we get violent episodes.

      The GI problem might be resolved by finding what the child is allergic to. You can also use the short chained fatty acids to repair the membrane that lines the gut. (recent posts on butyric acid). In effect you treat it as ulcerative colitis. If the GI problem is caused by mast cells then you can treat with cromolyn sodium or verapamil.

      Delete
  2. Hello,
    Ive been using 1800mg of NAC along with Brocolli sprouts with my son for 3 weeks now with VERY noticeable improvements in his behavior, cognition and mood. Yesterday he came to me complaining about his heart and lungs hurting. This had never happened before. It was a very hot day so I put him in front of the ac and after a while he stopped mentioning it. A quick google search of adverse effects of NAC turned up this paper http://www.jci.org/articles/view/29444 linking high doses of NAC with pulmonary arterial hypertension in mice. I can't translate the doses that they were giving to mice into the human equivalents. Is there any reason to think that the NAC and my son's symptoms were connected?

    Thanks in advance

    -Andi

    ReplyDelete
    Replies
    1. NAC has wide ranging effects that generally seem positive, but some people can have a negative reaction to almost anything.

      It might be best to rule out his pains as being a coincidence, by giving it a break and trying again. Maybe try just NAC and then just broccoli, before you give both together.

      There are studies showing NAC to be good for hypertension.

      Delete
  3. Hello Peter,
    I have started my son on NAC, 2 days back, I started him on 600mg capsules, opened the capsule and mixed with juice, I did feel a strong smell every time I did this. I think it's the sulfur, please suggest ways to avoid this. Also, yesterday I upped the dose to 1200 mg, seems like his stimming has gone way up. Not sure if it's NAC, haven't changed anything to my knowledge, he has been the happy child he is though. He weighs around 48lbs, will be 6 soon. Please let me know if you would notice any side effects before it gets better. I sure would not want to give up on NAC yet, given its positive effects.
    Thank you!

    ReplyDelete
    Replies
    1. Kim, the expensive NAC (PharmaNAC and Fluimucil) comes as effervescent tablets that taste OK. The NAC in capsules always tastes bad, if you open them up.

      It might be best to buy one pack of expensive NAC to see if it really works for your son, then you can find a cheaper way of giving it.

      In people who respond you might need 1800mg to 2400mg a day.

      Some people, a minority, do not tolerate NAC and it makes their autism worse.

      Delete
  4. Thank you for your reply.
    I did look for pharmanac, but looks like they are not making it anymore. The smell doesn't really bother my son though, was wondering if it still works. Will try for the other brand that you mentioned.
    I really wanted this to work for my son, will try lower dose for a few days before I quit.

    ReplyDelete
  5. They sell pharmanac at their website and on amazon.

    ReplyDelete
  6. I am an adult female, age 61, self-diagnosed with autism spectrum, with relatively mild symptoms but significantly effecting social and work life aspects, particularly post age 35 or so.

    This is a familial condition with no known relatives formally diagnosed, but with a number displaying obvious odd behaviors such as a high level of social awkwardness, repetitive body movements such as leg jerking, along with significant ocd, particularly hoarding to a fairly extreme degree. These behaviors appear to most closely link to a type of Aspergers.

    I have a great interest in natural treatment since my mid thirties and have literally tried hundreds of supplements.

    I discovered Jarrow's sustained release 600mg formula about two months ago and take in combination with Suntheanine L-Theanine 100mg.

    I find the 600mg of NAC overestimating - at times but not always resulting in hypomania. I therefore split the 600mg tablet in two, taking half in the morning and the balance around 6pm, sometimes later. When taken later, I tend to get insomnia, easily staying up half the night, wide awake. This side effect can be useful when working on a project and my next day sleep schedule allows.

    I typically take the 100mg chewable Natural Factors L-Theanine tablet in the morning or later in the day. I find no difference yet if taken with or without meals.

    The sustained release tablet has a bitter but not overly unpleasant taste. The chewable L-Theananine tastes has a pleasant, light candy flavor.

    I also take the methyl versions of B3, 6, and 12, along with cod liver and sea buckthorn, among others.

    Within a couple of days of beginning NAC and L-Theanine, my ocd, generalized anxiety, panic disorder, social anxiety, ADHD, and depression reduced significantly and appear to now be effectively gone. I had been taking the other mentioned supplements for some time. It was the NAC and L-Theanine that made the difference for me. You would need to research for yourself and check with your doctor.

    I wish I had figured this out some years ago but am nevertheless grateful for the enormous change these supplements have made in the quality of my life.

    I wonder why I responded to such a low dosage of NAC in comparison with other reports. I don't know the answer but have always been highly sensitive to most medications and with a high number of allergies across varying categories.

    I was diagnosed with asthma later in life, although I now believe I likely had it for years, and have a sister too who was diagnosed with asthma at an earlier age. My sister has my other Aspergers symptoms too.

    ReplyDelete
    Replies
    1. I purchased AOR R + NAC SR 90 Vegetarian Capsules and started giving him 1 tablet 3 x daily, but only began a few days ago. I am hoping to see less self talk - which has increasingly gotten worse recently, say over the last 2-3 months and less stimming. My son is 12 year old 'high functioning' child, but his self talk and arms flailing more often than not, makes him seem very not high functioning at all, especially in public.
      So far, no change in him with the NAC. Also, his sleep has been very poor of late as well. My husband and i both hear him bouncing around on his bed in middle of the night sometimes and he is a very early riser no matter what time he goes to sleep. I give him 10 mg of melatonin before bedtime. Which i don't see really helping to give him a solid sleep.
      Perhaps it helps him fall asleep.
      How long should i give the NAC to see if it makes a difference? And if i don't see any improvement, do i continue to give to him?

      Delete
    2. My son sounds a lot like yours. He is 12 and has had an increase in self talk and arm flapping in the last year or so. He is also high functioning, but doesn't appear so, especially in public. Did you have any results with the NAC? We started melatonin about 5 years ago, it was a God send for him. He can and will stay up all night without it. However I found that lowering the melatonin to 3mg worked better. Also, have you tried different brands of melatonin? We have had some that didn't work as well.

      Delete
  7. We just started using NAC with my son (7 years old, autism). We bought quick release 600mg, and are using it 2x daily. We don't seem to see too many results so far, but it's only been a few days. How often should we be giving it to him, and how much? I may also get the sustained release version next time so he doesn't need to take as much. If you could provide dosage details for the sustained release as well, it would be appreciated. We are trying to work this all out, but struggling. He also takes Guanfacine ER (2mg one time daily), and I was wondering if he can take them at the same time, or if it's better to separate by an hour or two? Sorry so many questions! We are just trying to find the best solution for my boy...I appreciate any help you could give. :)

    ReplyDelete
    Replies
    1. Kimberly, there are no stated interactions between NAC and your ADHD drug. I would use NAC two or three times a day for a couple of weeks to see if it has an impact. The sustained release version seems more potent and it is the one I use. I give NAC at the same time as my son's other pills.

      Delete
    2. Are you sure you are giving him (or her) the NAC without food, in my experience this is very important, just like with many other supplements on the empty stomach works best.

      So when your kid wakes up in the morning have him take it, and make sure he does not eat for atleast 30minutes, this allows for maximum absorption.

      I can literally feel NAC kicking in if I take it without food, yet when I take it just after a meal or with a meal, might aswell take a placebo then.

      Delete
    3. Yes, we are giving first thing in the morning, before breakfast. Then we wait a while before he eats (he doesn't like to eat first thing in the morning anyway).

      Delete
  8. Thanks for your response. We are seeing some hyperactivity, is that normal in the beginning?

    ReplyDelete
  9. Kimberly, oxidative stress seems to cause different problems to different people. In my son NAC stops stimming within minutes, but others see different benefits. Some people do not respond well to NAC, but this is a minority.

    ReplyDelete
    Replies
    1. Honestly, I haven't seen any drastic lowering of stimming. Yesterday and today I thought I saw a slight reduction in repetitive behaviors within 10 minutes of taking the pill or so, but the effects didn't last long (I would say 1-2 hours at most). After that, there was a lot of hyperactivity. I remember reading somewhere before that others have had this issue as well (the hyper), but it was temporary and subsided within a couple of weeks of use. I'm hoping for this result as well!

      Delete
    2. Kimberlly, you may just need a larger dose. NAC has a short half-life which is why they have a sustained release version. It also seems that oxidative stress varies throughout the day, which is why I give my son a larger dose in the morning. So you could try two pills when he wakes up then the next after 4 hours. I found the gelatine capsules much less effective than NAC sustain.

      You first need to determine if it works and then adjust the dosage. People are using up to 3,000mg a day.

      Delete
    3. Ok. Thanks for the information. I bought the gelcaps before I knew the sustained version existed and I plan to get those next time (or maybe before that!). I appreciate your help. Maybe I will try two of them tomorrow morning and see what happens. Thanks again!

      Delete
    4. I know this is an older thread, but do you give your son two of the NAC Sustain in the morning or regular NAC? I am doing another try at NAC as I think my dose was too low before. My son is 11 but is tall and weighs 100 lbs. Thanks!

      Delete
    5. Barbara, I use a drug form of NAC (ACC by Sandoz, or Fluimucil) which is an effervescent tablet and one NAC Sustain at about 7am. At lunchtime at school there is another NAC Sustain and on arriving home from school is another NAC Sustain. In total 2,400 mg of NAC.

      Analysis has shown that the actual amount of NAC when you take the tablet is much less than on the label. It degrades when exposed to air.

      NAC Sustain and the effervescent tablets are solid, not powders and so likely to be much more stable. I think NAC Sustain is the most potent, I use the effervescent tablet because it also contains binders so if you add other things to this drink it holds them better in suspension.

      I would suggest you try 4 NAC Sustain a day to see if your son benefits.

      Delete
    6. Thank you - I have the NAC Sustain and will start four a day!

      Delete
  10. Once again a confirmation that NAC is definatly good for pretty much any form of autism (low glutathione).

    N-acetylcysteine supplementation increases exercise performance and reduces oxidative stress only in individuals with low levels of glutathione.
    https://www.ncbi.nlm.nih.gov/pubmed/29233792

    ReplyDelete
  11. Hi Peter,
    Could you let me know which brand of NAC you use for Monty nd if it is available in USA?
    Thanks
    SB

    ReplyDelete
    Replies
    1. SB, I mainly use NAC Sustain, which is widely available in the USA. These are large solid tablets that some people may not find easy to swallow, but they appear to be the most potent.

      Delete
  12. Hi Peter,
    Do you know of any liquid NAC?My son cannot swallow tablets.I got NAC Sustain and he tried to chew it but it tastes very bad
    Thanks
    SB

    ReplyDelete
    Replies
    1. SB, in the US you can buy PharmaNAC tablets which dissolve in water and taste OK. They are an expensive US-branded version of what is sold in Europe as Fluimucil, both made in Switzerland, likely in the same factory.

      Delete
  13. Thanks Peter.I have just ordered from amazon.
    Thanks
    SB

    ReplyDelete
  14. Hello!
    I have Asperger's and decided to try NAC. It did reduce my compulsive behaviour slightly, however that could just be placebo. Anyway I've only taken it for a few days, so I guess the full potential is not showing yet. I got very rapid heart beat, which I found really weird. Stimulant medication have made me to have rapid heart rate, but now it felt that something caused me huge panic which in turn raised my heart rate and bp. I feel like if I think anything weird, my body reacts immidiately and I suddenly have a very distressed feeling. When I stop worrying my pulse goes down, but not completely to normal levels. I wonder if NAC has the ability to cause this.

    ReplyDelete
  15. In Pakistan its known as Mucolator by Abbott (pharma grade) and comes in orange flavored sachets of 200mg water soluble and taste like orange but smells a bit sharpishly weird. I have been giving it for a couple of days 400mg in the morning and 400 in the evening so far nothing good and nothing bad. The other option is the foil packed tablets with a combo of 600mg NAC + b12(methylcobolamin) and methylfolate (marketed towards psychiatrists for cognition and memory known as Oxiva). Oxiva will cost me $200 per month if it works. I tried that as well for 4days so far no effect.

    ReplyDelete
  16. Can you give NAC with Bumetanide?

    ReplyDelete
    Replies
    1. I have been giving NAC with Bumetanide to my son for nearly 7 years; no problems so far.

      Delete
  17. I/m going to try the sustain release for myself and for my Asperger kid who is 12.

    ReplyDelete
  18. Hello.thank you for making this blog. It is so informative. If you don't mind , were your son non verbal at three years old? Will nac help with receptive language? I have a 2 and half years old son with minimal receptive language and non verbal at this point. I really want to help him to learn... He stims a lot.. flapping hands jumping and vocal stimming too. I don't mind the stims, i just want to teach him how to communicate more. Many thanks in advance.

    ReplyDelete
    Replies
    1. Yes, my son was non-verbal at three years old.

      Stimming gets in the way of learning. An important step towards effective learning is being able to still at a small table and pay attention to the parent/teacher.

      NAC does help many people, but it is just one part of their effective therapy.

      If your child does not respond to language and is lost in his own world, you may want to try bumetanide. If he is a responder this will improve his cognition and awareness of the world around him.

      Delete
    2. Hi Anonymous!
      In my limited experience, I'd say hand flapping and similar are due to limited serotonin availability in the brain. Maybe 5-HTP could help.
      This in turn _could_ be an effect of immune activation/neuroinflammation making tryptophan to be metabolized along the kynurenine pathway via IDO instead of the serotonin pathway. If so, try something aimed at inhibiting the NLRP3 inflammasome, like Ibudilast, clemastine, BHB or Ponstan. I've seen change with receptive language with the latter at about the same age of your son.
      Upstreams of neuroinflammation could be anything, like oxidative stress and E/I imbalances, and so remedies for those are also worth looking at.
      I hope you find something that works.
      /Ling

      Delete
  19. hi Peter and Ling thank you for your wonderful reply. I tried to read and understand all the post regarding bumetanide then .. in my country here (indonesia) the doctors don't believe in biomeds. That is why i am so grateful with Peter that shares a lot of information about asd. It breaks my heart to not be able to communicate with my son. I do hope i will find something that works. Did you start your son with bumetanide at 3 years old, too? /Christine

    ReplyDelete
  20. Hi Peter. Would you happen to know why a minority do not respond well to NAC? What is it about the minority that causes a negative effect? I started my 3 (almost 4) year old on NAC about 4 days ago in order to reduce stimming (verbal and jumping). The result has been an increase in stimming (verbal and visual stimming - he will stare very closely and squint at screens or colorful objects). He also seems a bit spaced out, whereas before he was very aware, awake and "on" for someone who has ASD (I attribute his awareness to a successful run on the Nemcheck protocol). My son has gut issues - could the NAC be causing acidity in his gut? I am seeking more info before I decide to stop the NAC. Thank you!!!!

    ReplyDelete
    Replies
    1. NAC is usually very well tolerated, but there are known side effects that may occur including: nausea, vomiting, diarrhea and constipation.

      https://www.healthline.com/nutrition/nac-benefits#TOC_TITLE_HDR_12

      Perhaps the GI side effects outweigh any benefit as an antioxidant in your son.

      There are other antioxidants that might be better tolerated, eg carnosine, vitamin E, vitamin C etc.

      There is another paper published on oxidative stress in autism, published recently.

      https://www.nature.com/articles/s41398-020-01135-3


      "Mousavinejad et al. found reduced oxidative stress in ASD children supplemented with Coenzyme Q10, and the supplementation also improved the children’s gastrointestinal problems and sleep disorders"

      So you might want to try CoQ10 since your son has GI issues.

      It also possible that your son is one of the few without oxidative stress.

      Delete
    2. Piling on this for possible NAC side effects. In my first trial of NAC last month, I moved quickly to 1350mg over 7 days and my son started waking up and staying awake 3-6am for a week (ie) I stopped NAC on the first day of wake-up but sleep took a good 7-8 days to come back to normal. I couldn't be sure it was the NAC and was hoping it was something else. I started NAC at 450mg recently and on day 3, my son was up again from 3-6:30am, except this time it was worse and he woke up with a lot of yelling. Both times I did not see obvious signs of GI distress (he was regular) or other pain. I have stopped NAC again. Peter - do you have a theory? Everything I've read seems to point that it should be helpful. Could it be intolerance to NAC itself or other ingredients? Does it expose other deficiencies? I was using PharmaNAC. I dissolved it in very little water (as my son will not drink anything flavored), so the other thing I am wondering if it has undesirable effects when it is not dissolved with enough water. He did have it following a meal where enough water was consumed.

      Delete
  21. Not sure anything has been posted on this here already. Looks like NAC has a mode of action even without GSH:

    N-Acetylcysteine Inhibits Kynurenine Aminotransferase II
    https://pubmed.ncbi.nlm.nih.gov/32768617/

    Subchronic N-acetylcysteine Treatment Decreases Brain Kynurenic Acid Levels and Improves Cognitive Performance in Mice
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7909398/

    /Ling

    ReplyDelete
    Replies
    1. Ling, α7nACh appears again and those taking NAC are already benefiting.

      Multiple anti-oxidants may be necessary, as suggested in the paper below on Schizophrenia, using an unusual combination of anti-oxidants.

      https://link.springer.com/article/10.1007/s40473-019-00174-5

      "A “single antioxidant” may be inadequate to counteract the complex cascade of oxidative stress. The galantamine-memantine combination as “double antioxidants” is promising. Hence, randomized controlled trials are warranted with the antipsychotic-galantamine-memantine combination with oxidative stress and antioxidant biomarkers in schizophrenia."

      Delete
    2. It's funny they call them antioxidants. The same combination (galantamine+memantine) was rather used for "improved signal-to-noise ratio" in Alzheimer's.

      /Ling

      Delete
  22. Here's a review on NAC safety long-term:

    Safety of N-Acetylcysteine at High Doses in Chronic Respiratory Diseases: A Review
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7892733/

    /Ling

    ReplyDelete
  23. Hi !!! I have been a silent lurker on this blog for quite sometime, and I must say it is fantastic and has helped me immensely. I was reading up on the safety of NAC and came across a couple of papers suggesting NAC increases the risk of cancer(rather than decrease it). The reasoning behind this is that excessive antioxidants may shield the malignant cells which would have otherwise been eliminated by the immune system. This has obviously scared me and I have stopped NAC for my brother with ASD. Peter, what are your thoughts on this ? I know dosage is a critical factor and the mice in the studies were probably insanely megadosed, but should we be cautious ?

    ReplyDelete
    Replies
    1. Oxidative stress is actual a weak point for cancer cells, they are vulnerable to it. Once someone has cancer they should not take antioxidants, because the antioxidants protect the cancer cells.

      Activating NRF2 and maintaining high levels of GSH (with NAC or ALA) should protect you from getting cancer, but once you have a cancer they have a negative effect. Unfortunately when people get cancer they then modify their diet, to be rich in antioxidants etc, but it is not going to help, it may make things worse.

      Delete
  24. Combining galantamine and memantine is counterproductive. Galantamine is a PAM of α7nAChRs, memantine is an antagonist of α7nAChRs, the action similar to kynurenic acid. Blocking kynurenic acid pathway and adding memantine is also counterproductive because memantine acts as kynurenic acid (antagonism at NMDAR and α7nAChR, agonism at D2R). If memantine is promoted as neuroprotective and pro-cognitive, then the same is true about kynurenic acid.

    ReplyDelete
  25. I am thinking I may have missed some guidance about what to do in lieu of no more OTC sustained release NAC. I have been cutting back on the dosage to keep from running out completely and I am already seeing an uptick of grouchiness and rages.
    Are doctors prescribing it? Is there a replacement OTC product?
    Thanks.
    Nancy

    ReplyDelete
    Replies
    1. Nancy, you can still buy NAC in gelatin capsules in the US. Stock up on these. In theory all OTC NAC in the US is going to be unavailable.

      Doctors do prescribe NAC. Ask your doctor or pharmacist.

      Delete
  26. My son, 21, is non-verbal with aggression and violence. He is on a cocktail of psychotropic meds. I want to start NAC. Any suggestions regarding what dosage to start with? Thanks in advance.

    ReplyDelete
    Replies
    1. Tracey, I suggest you start with just one capsule, to be sure he tolerates it. Some people are allergic to drugs containing sulfur/sulphur. Most capsules contain 600mg. NAC has a short-lasting effect. It needs to be given at least 3 times a day.

      I give my 18 year old 1,200mg before breakfast, 600 mg before luncb and 600mg about 4pm. I would try that dosage.

      The quality of NAC in capsules is poor, because it reacts with air. So the 600mg capsules actually contain far less.

      The FDA is trying to stop the sale of NAC as OTC in the US. The best version NAC Sustain is no longer produced.

      Delete
    2. just to share my experience, i was using Pure Encapsulation brand which is good quality, but one case when i bought Biocare which was smelling rotten eggs (i am glad that i had a knowledge from Peter's research summary here that it means NAC is oxidized already if smelling eggs hence not good), so i switched back to Pure Encapsulations brand.

      Delete
    3. I have started with 1800 mg for my son ( 600X3; morning, afternoon and night) for the last 20 days. He is sleeping well and overall seems in a good mood. Cannot say whether it is NAC or just a phase! Anyway, will continue for now...

      Delete
    4. Tracey, make a pause with NAC and then see if he keeps the good mood. Then you know if it is just a coincidence.

      Very often the best way to know if an intervention is helpful is to stop using it and note the effect.

      Delete
    5. Sounds like a good idea. Will do so. Thanks

      Delete
    6. Tracey, you have to give him 20mg of propranol 2-3 times a day, pamoate pyrantel 750mg in the evening for 2-3 days, and you will see that his anger will disappear, stay on propranol, after 3 weeks repeat with antiparasitic, you will see that I was right, you don't use psychotropic drugs unless he wants to sleep...

      Delete
    7. Thank you for your suggestion! How long should I continue with propranol?

      Delete
  27. To share my own experiene, I am also a late diagnosed HFA / Asperger's, like one of the previous commenters here. The Aspergers has tremendously impacted my quality of life.

    NAC has indeed been the "silver bullet" that it is made out to be, at least in my case. My OCD, depression, anxiety, ADHD symptoms and compulsive nail biting have all nearly disappeared after just a few days of NAC. It has been truly a godsend!

    For those of you in the US, I am wondering how you all have been sourcing NAC, now that the FDA has been cracking down on OTC NAC.

    The cheap NAC (NOW brand, etc.) is poor quality and smells like rotting eggs in the vast majority of cases. I am either planning on trying out the Wholefoods NAC Sustain, buying PharmaNAC (which is very expensive) or getting a prescription for generic NAC from my doctor.

    ReplyDelete
  28. Today is the first day we tried NAC capsule form 600mg divided into three doses. Afternoon he was crying very much in mid of his nap. He couldn't sleep though he was very much sleepy. Night also he woke up crying couldn't sleep. He is 3.7 years old nonverbal so no idea why he was crying and couldn't sleep. No diarrhoea or vomitting... I don't know whether to continue giving him NAC without knowing the issue and impact of it. Please help.

    ReplyDelete
    Replies
    1. NAC 200mg as fluimucil 200 is often given to 2 year olds, 2 or 3 times a day.

      Some people do not tolerate NAC, but most have no negative side effects.

      If you observe side effects, then you should stop. NAC tastes bad so you have to mask the taste. The effervescent NAC tastes fine.

      Delete
    2. Probably a herx reaction from the die off.

      https://www.thecandidadiet.com/health-benefits-of-nac/#:~:text=NAC%20Supports%20Your%20Liver,-If%20you're&text=When%20the%20Candida%20yeast%20cells,%2C%20uric%20acid%2C%20and%20acetaldehyde.

      Why not try Leucovorin to help with his communication?

      Delete
    3. Peter which means I can try fluimucil 200 NAC and observe he cries again while sleeping. If the same continues fluimucil NAC should be discontinued too??

      Delete
  29. If it's herx reaction should I stop NAC or continue with fluimucil 200??

    ReplyDelete
  30. 2 things, is he crying because he's in pain or because he can't sleep? I've notice with antioxidants a sort of fatigue sets in and bags under my son's eyes. Does he have GI issues? If not maybe cut the dose and take some ibuprofen.

    ReplyDelete
    Replies
    1. I don't think he is crying in pain because he never cries while awake without reason.. particularly when is asleep he wakes up crying or when his sleep is disturbed.. it happens both in noon time and night time naps. He cries a lot and it takes much time to pacify him. We give him inulin for his GI. How does ibuprofen helps him in sleep issues. We have fluimucil NAC 600 tablet not 200mg how to give him the particular dosage? Please advice

      Delete
    2. Hello, the child is constipated or has soft stools, I say stop the inulin, try spectrum enzyme enzymes, rifaximin, a 10-day course. How old is the child? Does he have feeding problems? That is, if he is restrictive? NAC can also cause abdominal discomfort.

      Delete
    3. if you have pyrantel pamoates, give it for 2 days, it could be a parasitosis somewhere. Stop inulin and with NAC

      Delete
    4. Agreed, NAC can cause abdominal pain. Ibuprofen will help decrease the pain.

      Delete
  31. Buga Dragos No he didn't have feeding problems..he is three and half years old.. he is having sleep issues since he was 7 months baby.. we have been giving inulin for 6 months now..

    ReplyDelete
  32. Buga Dragos i think inulin stopped working for him..his behaviours are not improving. After finishing 10 days course of rifaximin can NAC and other supplements like leucovorin be introduced ? If he relapse then shall we try continuous rifaximin along with NAC and leucovorin. please suggest.

    ReplyDelete
  33. The link to the NAC posts at the top of this page isn't working. I assume it used to point to the NAC label search
    https://www.epiphanyasd.com/search/label/NAC

    Feel free to delete this comment if you get a chance to fix it - and thank you for all you do, Peter!

    ReplyDelete
  34. Hi Peter - Wanted to share another testimonial about NAC. I have a friend with a 6 year-old autistic boy, limited speech and not very social. I've been trying to convince him to use NAC for a while. Finally, he tried - 500mg twice/day. He didn't think it was successful and I suggested trying 3ce/day. Finally, he trialed this over the Easter break. Today, for the first time - their son verbally called his younger brother by name and asked to play! In the dad's own words:
    "He initially went to just grab him on the chair. His mum asked him what he wanted. Then he says . So we tell little brother to chase after him. Then it was game on"
    Each time the poor boy (little brother) wanted to rest. He would just call out and grab him again.
    The parents are so thrilled and encouraged to explore more treatment via your blog! Thank you so much!

    ReplyDelete
  35. Hi Peter -
    Do you know this product - Glutathione Recycler by Apex Energetics? My son's chiro recommended it in place of the NAC regimen we have. Any feedback you can share will be greatly appreciated.
    Mo

    ReplyDelete
    Replies
    1. Mo, I have not come across this product. It is NAC plus selenium plus other things like Silymarin.

      Give it a try. You have already found that different brands of NAC have different levels of benefit.

      Selenium is included in other brands. Silymarin us a something other readers use.

      The only issue with products with numerous ingredients is that you might have a negative reaction to one and you never know exactly what effect if any, each ingredient has.

      Delete
  36. Thank you so much. I will trial it and let you know.

    ReplyDelete
  37. I know this is an old thread but I thought I’d add my experience with NAC. I was taking it daily…it didn’t help my mental health. Made me restless. My stomach didn’t like it. I was looking at studies on it for hormonal regulation because I struggle with amenorrhea. For women’s problems, it was studied at 3 600mg doses a day, taken only 3 days a week. So I decided to try it that way. Not only did it fix my female problems completely, it helped with my mental health without the excitability…so it’s not necessary to take it daily for it to work in your body if you or your child are struggling with it. Take it at least 3 days a week, though. I’m fixing to up my dosage to 2400mg taken 3 days a week. Experiment with the dosage. You may need a higher or lower dosage. And you may need to take it only a few days a week or alternate days or you may need to take it continuously.

    ReplyDelete
  38. Is there any risk that trying NAC will make stimming worse? My son has had a recent, major uptick in stimming over the last few weeks. He is 12 and is now doing it with increased gusto, running, jumping, leaning forward, rocking, spasming and waving his hands with sound effects, back and forth. It is the first time it's really hit me the degree of his disability. The psychologist sort of presents stimming as something positive, a way to discharge energy and manage sensory input and output, but from the outside he does not look like he's enjoying his body forcing him to do this over and over. His pediatrician is on board with trying bumetanide, and I hope we'll start soon, after she runs baseline tests, etc. In the meantime, it pains us to see him like this and I'd love to try NAC. If he has too much neuronal chloride which is affecting the way GABA works, could NAC increase GABA which would make things worse until chloride levels are regulated? We wouldn't know if chloride is an issue for him I suppose until we try the bumetanide. But is there any reason not to try NAC in the meantime? Of note, I think he may have allergy issues. He does have pretty bad seasonal allergies and has been sneezing a lot lately. When he was about 7 or 8 years old, he had an episode of substantial swelling in his jaw/chin area that was never explained (he just woke up one morning with this hugely swollen jaw and neck area) and which was accompanied by some hives on his body. He went to the emergency room for it and the doctors could never really explain it. One more thing, a couple of days ago with all of this furious/frantic running and stimming, I started him on 690 mg/day of omega 3-s and 500 mg twice a day of Quercetin (this formula also has 50 mg per capsule of Zinc Oxide), and 2 tsp daily of children's Claritin. I feel like there may have been a slight calming effect, just slight, but he is still doing it. Cognition-wise, my son has learning disabilities but is fairly high-functioning with cognition and social behavior (can interact and communicate with kids and adults but does not have great friendships and is failing his classes at school). The excessive stimming makes him appear to be less functioning than he is. Sorry this was so long, just really wanted to find out if there is any downside to trying NAC while we await the beginning of the bumetanide trial. It would be hard to bear an increase in stimming for him. Many thanks.

    ReplyDelete
    Replies
    1. There are no real downsides to trialing NAC. A small number of people do not tolerate NAC and this will be evident from the first dose.

      The best NAC I found was NAC Sustain, which is again available. NAC is only effective for 3-4 hours and so the sustained release version is better. It is a large solid capsule. The solid capsule also stops the NAC reacting with the air and spoiling (hence the smell of rotten eggs associated with NAC).

      I would suggest you start with one capsule and just check he is not intolerant. If all is well then try it 3 times a day. Some people take 3,000mg a day. Oxidative stress can be highest in the morning, so dosing 1,200mg at breakfast, 600mg around lunch and another 600mg in late afternoon can work best.

      For some people their stimming or OCD just stops from the first pill, that was my son's case. In some people there is no apparent benefit.

      It looks like your son has some autoimmune issues and these will aggrevate his autism. They may mask the potentially beneficial effect of bumetanide. Try and find a good immunologist who understands autism.

      Good luck!

      Delete
  39. Thank you, I am very grateful for your quick response. We are out of town right now and I'm tempted to try the only kind that's available here at the nearest store, while I order and await the arrival of NAC Sustain, which I see online. Thank you for this amazing blog, it gives hope.

    ReplyDelete
  40. Update, I went to the store and bought NOW brand, 1000 mg of NAC (that was all that was available here) and gave him a tablet. I didn't see any negative side effects, so I'm hoping this means he tolerates it. It seemed to possibly calm the running/jumping/galloping for about an hour to an hour and a half...or maybe it was just coincidence or wishful thinking on my part. He then went back to doing it. I am awaiting the NAC Sustain. I think while I wait for the higher quality stuff, I'll try out 1000 mg of the NOW brand each morning and another 1000 mg each afternoon. Thank you.

    ReplyDelete
    Replies
    1. Allergy may also be playing a role. You could see if adding an antihistamine to the NAC provides a benefit.

      Delete
  41. Thank you. The last 4 days I have using 5 mL Children's Claritin once in the morning, and 500 mg (twice a day) of Quercetin. Also 690 mg Omega 3's once in the morning. The NAC and Quercetin are both from Walmart, maybe not the best quality. I will try Zyrtec instead of Claritin, maybe that will be better. Peter, in your experience, does *every* single condition possibly contributing to the autism need to be discovered and thoroughly addressed before there is an improvement? We have tried so many things and so many functional medicine doctors and treatments over the years (like everyone here I know) and it always felt like throwing darts at a dart board. Never much improvement, but then again, we were really never able to perfectly follow the complicated protocols they recommended. Or afford them. There can be such a huge number of conditions, allergies, intolerances, imbalances, etc playing a role; if there are 25 things playing into one's autism and you successfully treat 24 of them, are you no better off? I do remember from an early functional medicine assessment that my son showed indicators of oxidative stress, and we've seen indications (the facial swelling as well as typical symptoms) of allergies, so I am going to focus on NAC and allergy control and see if we get anywhere. I will also look for an immunologist who understands autism, as you suggested. I read in his bio that Eric Lemonnier had treated thousands of children with autism. I wonder if he accepts patients and does treatments remotely. I was thinking of trying to contact him. My son has always seemed pretty high functioning, and this very amplified stimming with almost a convulsive appearance is new. Maybe it is a combination of allergies (it is summer after all) and the fact that he's probably entering puberty (he will be 13 in a few months) is contributing to this.

    One more question. In the Spring, I had been giving him 5- htp and Lithium Orotate. His mood seemed better for awhile, but I started noticing an uptick in stimming, so I stopped them. Then I started him on a pharmaceutical grade probiotic (Megaspore Probiotic) and butyric acid, roughly the last week of June. With the stimming and galloping still really bad, I stopped them as well. Could any of those treatments that I tried have been responsible for the increase in stimming?

    Now I have discontinued all of that and I'm going to focus on NAC, allergy management, Omega 3's, and bumetanide once my pediatrician moves forward with prescribing it.

    Thank you once again.

    ReplyDelete
    Replies
    1. AW, you definitely can make incremental improvements to treat autism, you do not need perfection and fix 25 issues.

      Equally well, if you use too many supplements you certainly can make things worse. Only use what is genuinely effective.

      5HTP is quite well known for making things better and then worse.

      Dr Lemonnier is a big proponent of bumetanide, but is not like a American MAPS/DAN type of doctor.

      Oxidative stress and neuro-inflammation of some type are features of most autism. I suggest treating these first.

      Delete
  42. Hi A W,
    I know your message is mainly addressed to Peter, but I see that you are using quite high dose of quercetin, which is a flavonoid and flavonoids can cause hyperactivity (among other things).
    In our case (3.5 yo child), we trialed neuroprotek (which includes luteolin, quercetin and rutin) and it immediatelly caused sleep trouble . We did not stop it at the time because some of the side effects are transient, but ultimately it caused hyperactivity and the stimming increased as well. After a few days of stopping it, everything went back to normal.

    Every child is different of course, but I think it would be wise to stop all the supplements for a few days, establish a baseline behavior and slowly re-start, in order to find out if any of the substances is not well tolerated.

    All the best,
    Konstantinos

    ReplyDelete
  43. Thank you very much, Peter and Konstantinos. This is all wonderful advice and I am grateful. I had no idea 5-htp could make things better and then worse, I am glad I stopped it weeks ago. I also didn't know about Quercetin and hyperactivity.
    Today I gave my son 5 mL of Zyrtec (half the allowed dosage for his age) and one 1,000 mg tablet of NAC in the morning, and nothing else, and there was very little stimming. I saw some small signs of it towards the end of the day. Some walking back and forth and finger waving, but no wild head shaking and contortions/convulsions. He may have had some drowsiness from the Zyrtec, or it may have just seemed that way because he was so much calmer today than usual. I am eagerly awaiting the NAC Sustain to arrive on Thursday, and I will try a divided dosing schedule similar to Peter's for Monty, but I may start with lower doses. Konstantinos, I agree with your suggestion of stopping everything for a few days, but it is so hard to do this when you see signs that something might be working. But maybe I really ought to do that before adding bumetanide into the mix. I'll be seeing the pediatrician tomorrow and I'm guessing we'll talk about what labs she wants to get before beginning. Thank you so very much.

    ReplyDelete
  44. Hi Peter, another quick question. I've been continuing to use NAC and Zyrtec only (no other supplements right now) and am trying different amounts of each (I tried one day with no Zyrtec and lower NAC dose, for example). Do you think I should completely stop all supplements altogether for a few days before beginning the bumetanide trial? I read that it could take months to notice results on bumetanide, if he's a responder. Would you recommend waiting out that period to see what happens with bumetanide before picking up with the NAC again? Thank you!

    ReplyDelete
    Replies
    1. AW, I would keep giving the NAC and Zyrtec during your bumetanide trial. Most bumetanide responders show a clear benefit after 10 to 15 days as long as you give a high enough dose. In your case a dose of 0.5mg once a day would be a good place to start.

      Delete
  45. NAC only ?
    Live in Canada. Almost impossible to get these meds that are prescription only. I have a 19 year old high functioning son. Only thing I’d address at this point in his life is his stimming which he does on & off thru out the day.
    Would the good quality NAC address that ? I saw it in the heath food store.
    What dose would you suggest ?

    ReplyDelete
    Replies
    1. NAC works well for many, but not everyone. In an adult you can easily go up to 3,000 mg a day if needed. You dose it 3 or 4 times a day.

      Some NAC seems to work better than others, because it reacts with air. It just means that when a jar says each capsule contains 600mg of NAC, in reality by the time you take it it contains much less.

      NAC Sustain works well. It comes as a hard tablet, not as a gelatine capsule.

      Delete
  46. My 12 year old son has now been taking NAC since 7/5 (we started out with probably not a great brand, from Walmart) and a regimen of NAC Sustain (1800 mg divided, like Monty's dosing) since 7/14. I give the morning and afternoon doses of NAC with 5 mL of Zyrtec. Today I added 10 mL of childrens' ibuprofen in the early afternoon. I'd say there have been some better days and worse days with the galloping, pacing, jumping, head shaking, finger waving and noises, but it has not at all solved the issue so far. I would maybe say there is an improvement from the worst of it that I saw him go through on 7/3, but today it seemed like if he wasn't on a screen, he was pacing and jumping and making noises. I know he has seasonal allergies, but not sure what other immunological issues he may have. We are supposed to start bumetanide next week but I'm feeling discouraged about it working if unknown allergy/immune issues are at play. Peter, when you first started bumetanide with Monty and noticed a pretty quick positive effect, was it during a non-allergy season? Does it seem like one must first visit an immunologist to see what allergies or immune issues one might have to deal with, to have any hope of the treatments working?
    I am having a hard time finding an immunologist who understands autism. If I just go to a regular immunologist, what would I ask them to do? Would it be across-the-board allergy testing? My son did have allergy testing for foods years ago, which all came up negative.

    My son is overall relatively high-functioning, as he does a pretty good job of communicating with others, albeit in a very narrow, repetitive fashion about very certain subjects. And he has severe inattentive ADHD (which may be another way of saying he is always in his own world, as a typical characteristic of autism).

    I feel like the amplified stimming is the biggest issue right now, but when school starts, it will once more be that plus the inability to focus or learn.

    I am not sure what direction to take. Keep going with NAC/Zyrtec/Ibuprofen? Move forward with bumetanide? Try to get to an immunologist in the meantime? Hold on everything until we can get to the immunologist?

    Any suggestions would be greatly appreciated.

    ReplyDelete
    Replies
    1. A.W. since you live in the US I suggest you contact Dr Jyonouchi.

      https://www.saintpetershcs.com/physician/harumi-jyonouchi

      I think she is most knowledgeable in the field and knows all about autism.


      Delete
    2. I will do that, thank you!

      Delete
  47. One other question. I had mentioned before that he was on 5-htp and Lithium Orotate. And he did initially better, then worse (you said this is a known issue with 5-htp). Could an uptick in stimming from those supplements in any way indicate he might be a responder to bumetanide? I was reading that Lithium stimulates GABA, but he was on Lithium Orotate. Thank you.

    ReplyDelete
    Replies
    1. The best indicator of a bumetanide responder is a negative reaction to a benzodiazepine drug or any other GABA agonist. Instead of a calming effect it will be the opposite.

      Delete
  48. Are there any other options to reduce stimming and repetitive behaviors if one does not respond to NAC? Thank you.

    ReplyDelete
    Replies
    1. A.W. while NAC is the most common solution very many other interventions have been shown effective in individual cases.

      When therapies are shown effective for at least some autism, it normally means a subgroup did reduce their repetitive behaviors. There is a whole section in my book where I review each drug that has been in a randomized clinical trial.

      It will be a case of trial and error,, but you are likely to find a solution.

      Delete
    2. Try a food diary. I noticed my son's stimming increased with trans oils and sugary foods.

      -Stephen

      Delete
  49. Does NAC help with self talk?
    My very high functioning son talks to himself as if someone else is listening
    Thoughts ? On dosage?

    ReplyDelete
  50. Within a day of NAC we had true speech, after 1 month sentences have formed. pronunciation is improving and he is using all syllables, he is 5. He is communicating in meaningful language and able to provide us with instructions and let us know his needs. His ABA therapist is astounded.
    However for us, it has not reduced stimming, although he really only does this when using tech or very excited.
    Prior to this b12 only really gave us a handful of words. Unsure what to try in addition to this. If we miss a few days the speech does not go away.

    ReplyDelete
    Replies
    1. Victoria, that is great news. NAC can be a gamechanger.

      Stimming is a very general term. Some people have repetitive actions that stop them doing anything else, like walking or sitting down.

      If NAC has a positive impact then other things probably will also. You cannot really predict, but this blog is full of ideas.

      Delete

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