One
effective intervention in autism, particularly to reduce stereotypy, is N-acetylcysteine (NAC). Here NAC is being used as an anti-oxidant in
its own right and as a precursor to the body’s own main anti-oxidant, called
GSH. Classic autism is associated with
oxidative stress and so NAC should be beneficial.
In much of
Europe, NAC is seen primarily as a pharmaceutical, in North America, and much of
the rest of the world, NAC is primarily just another supplement.
As a drug,
it is mainly used as a so-called mucolytic
agent, and as such is used as a cough medicine, because it
breaks down mucus and liquefies it, making it easier to cough up. It is frequently prescribed by doctors for
children, but only in some parts of the world.
The problem with NAC, and all supplements, is quality
control. There is pressure to drive down
prices and so quality will vary. NAC is
not particularly stable (it is labile) and so it tends to break down and
release some foul smelling compounds.
For those who remember chemistry from school, the chemical formula is C5H9NO3S
and the following chemical structure:
The smell of rotten eggs is associated with H2S,
hydrogen sulphide/sulfide. The ‘S’ in
NAC is sulphur/sulfur and so when it breaks down or oxidizes you get a nasty
smell.
The question is how much of a smell is normal and how
much means your cheap NAC capsule has spoiled to the point of being worthless?
There is plenty of online discussion on this subject
among regular users of NAC. As usual,
much is nonsense; some people are even saying that NAC has to stink and that it is a
sign that it is good.
When it is freshly produced, there should be very little
smell. When you open the pharmaceutical
NAC from its blister pack there is no smell whatsoever.
Cheap NAC
Since you need large amounts of NAC for treating autism,
I found a brand of the cheap NAC capsules, but I always open the individual
capsules and mix them in juice. I never
had any stinky bad egg smell until recently.
Now as soon as I open the jar, let alone the capsule, there is a potent
smell. Try a jar from a different batch,
same smell. More to the point, I have
noticed small signs of stereotypy when Monty, aged 10 with ASD, goes for a
swim. He is swimming in the water and
then starts wiggling his fingers and looking at them.
So I have decided to switch to the pharmaceutical NAC,
which where we live is called Fluimucil and is made in Switzerland. You buy it in the pharmacy over the counter, but
without a prescription. The cheap NAC
does not say where it is made, or even have a use by date. I suspect that different batches are made by totally
different producers, whichever offers the lowest price.
The well-known expensive brand of NAC sold in the US is actually
produced in Europe, if it turns out to be Swiss, we can probably guess who is
making it for them.
It is clear that when the cheap NAC is very fresh, it works
fine, but I want a product that functions as it should, 100% of the time.
I will see if the small re-emerging signs of stereotypy
disappear with the Swiss NAC.
My daughter was prescribed NAC for irritability and aggression by her allopathic psychiatrist. We did years of the DAN! protocol and she is considered HFA the last few years, but still would go 0-60 in seconds with rage when she became anxious and she still has irrational fears that cause severe anxiety. Within days of being on NAC, it all disappeared. I did also change her diet to a low free glutamate, so that could be impacting the results as well. The only way to know for sure is to change one and she is doing so well, there's no way I'd do it. I am afraid of a tolerance and her psychiatrist did warn me that it's possible and he suspects it in one of his other ASD kiddos he's treating with NAC. I've always done most interventions with diet, but after the dramatic effects from NAC, I'm researching alternatives to help support more development. I'm especially interested in answers for anxiety in children with ASD? My research has shows they do not respond to the typical medications, like others and it can often make the anxiety worse.
ReplyDeleteThank you. I am just learning about mast cell problems, as I've begun having debilitating allergies the last year after making some lifestyle changes that causes severe dizziness. However, I do not know if my child is the same and since my allergies are starting to flare right now, I will know soon. Do you see issues with depression using Quercetin in kiddos on the spectrum? I was reading it can be an issue for people using it for allergies.
DeleteQuercetin is actually used to treat depression as well as various inflammatory conditions. I found it useful myself when I tried it.
DeleteThank you for the info. I am curious, in your research have you come across any connection between Eosinophilic GI disorders and Autism?
DeleteHere is a good link for you:_
Deletehttp://questioning-answers.blogspot.com/2011/05/eosinophils-and-autism.html
I think you will find that GI problems in autism, particularly if there is any sign of a mast cell connection, are likely to respond well to Verapamil. It may indeed solve the problem in its entirety. The effect, if any, will be evident within a couple of days.
Thank you so much. My child was dx'd with EGID at 4 weeks of age and we've battled food intolerances for 9 years now. It was so severe a g-tube was placed for elemental formula. I noted that when we stopped playing lab rat with solid foods and stuck to the formula, developmental milestones began to be reached. The last biopsy showed no inflammation, but that was before introducing a variety of solids again. The regression came when I was instructed all was better and I could lift food restrictions, so after a one year roller-coaster I again removed most previously identified allergens and it is getting better. I will look into Verapamil. Again, thank you.
DeleteI assume you have already tried cromolyn sodium, this is a mast cell stabilizer. Other than in this blog you will not find anything on Verapamil and autism. In the people who tried it, it works wonders, just read the comments on the blog. It is a calcium channel blocker, but it also affects mast cells and a potassium channel involved in the inflammatory process. For us it eliminates the summer time raging that used to occur, in people with food intolerance rather than a pollen allergy it remarkably has a similar effect, treating the allergy and the autism flare up.
DeleteRealistically, the only NAC you should be using is PharmaNAC by Biovantex. It's the only one that I know of that manufactured in a completely oxygen free environment and each effervescent tablet is individually vacuum sealed to prevent any oxygen from degrading the NAC.
ReplyDeleteIf you were to peel an apple and leave it on the table, within a very short period of time it would oxidize, start to turn brown and very quickly lose many of it's vitamins. It's the same with NAC. NAC reacts with Oxygen, which is what gives it that rotten egg smell and it doesn't take long for it to "go bad" and literally become useless.
Biovantex do not actually make NAC. A Swiss pharmaceutical company called Zambon makes nice individually foil packed effervescent NAC. They sell it around the world (but not in the US) as Fluimucil. I suspect they also make PharmaNAC for Biovantex, since they do contract manufacture.
DeleteFluimucil costs around 35 cents per foil packed effervescent tablet .
What do you pay for PharmaNAC?
The cheap NAC does actually work, but it is not 100% reliable. This is true with all supplements that are not made by a serious pharmaceutical company, which means 99% of supplements.
We've been using Swanon's Ajipure and it's a fraction of the price of PharmaNAC with less additives and no "flavorings". I would never purchase PharmaNAC, simply because of the ingredients they use. After hours of researching oxidation of NAC, and learning about the sulfur smell, I bought a bottle of cheap stuff to compare the Ajipure to everyday. We open a bottle every month and I've yet to detect any sulfur. Plus, we've seen amazing results. If I stop seeing results, I will question the brand. It helps that Swanson's allows me to return products for up to a year for a full refund, so if it fails at any point I am not out a ton of money.
DeleteHi Peter,
ReplyDeleteI was wondering what are you final conclusions a year after this article. Do you keep using cheap NAC or switched permanently to Fluimucil?
Could you connect for sure the small signs of stereotypy with the bad NAC?
I'm asking because I'm beginning NAC on my son and the box smelled a lot of rotten eggs. I open each capsule one by one, but more than 60% smell bad... which makes me think that in the end Fluimucil might be cheaper.
Thanks!
David, if you are doing a trial you might as well use Fluimucil, it is the highest quality. If you decide Fluimucil helps then you can see how you get on with the cheap NAC capsules. My conclusion is that even the smelly capsules have a positive effect. For people able to swallow solid capsules there is also NAC Sustain, which is a clever idea and they do not smell bad. We use all three types.
DeleteHi David. Does this mean Fluimucil is in powder form only? We are a capsule family and don't get liquids swallowed when powder is mixed in. I just purchased NOW brand 600mg capsules and our psychiatrist warned of the smell. My son (and I) really need this so before starting, I was looking online for tips on how to take it without noticing the smell.
ReplyDelete1) Does Fluimucil come in capsule form?
2) Can Fluimucil be ordered if I live in the United States?
3) Is the NAC Sustain you mentioned sold by the same company as Fluimucil?
4) Do you have any experience with NOW brand?
5) Do people experience any of the same smell later in the day on one's breath or through their pores?
(similar to the effects of garlic)?
6) Any tips on how to get it taken twice a day without the smell?
1. Fluimucil is sold as an effervescent tablet that makes a pleasant tasting drink. No capsule form.
Delete2. PharmaNAC sold in the US is virtually the same as Fluimucil.
3. NAC Sustain is sold in the US. It is not made by the Fluimucil people.
4. Brands like NOW, Swansons etc just buy in bulk from the producer, so the product can vary from batch to batch depending on who they bought it from. NAC Sustain is a patented product and though it is not so expensive it is very consistent and has no smell.
5. NAC itself does not smell, when it starts to degrade it gives off the smell of rotten eggs. Once you swallow it there is no further smell. If you want a tablet with no smell buy NAC Sustain. The more smelly the NAC the less effect it will have left in it.
6. Use NAC Sustain or NAC capsules that are far from their expiration date.
Thanks for this!. I arrived here because I was wondering wether my Now Foods bought Nac capsules where of good quality or not, because of their lack of smell.
ReplyDeleteI've been taking it since a few weeks for mental health and mood. The thing is that they have very little sulfur odor and I cant really say that they have a bad smell/taste at all, even if I open the capsules and swallow them directly. And after reading on different places I came to believe that bad smell was an inherent quality of it, as so many people seem to think. I was thinking about writing a bad review on amazon but after reading your article I will be more cautious.
Even more, now that I now it's supposed to be related to oxydation maybe I will experiment by opening one capsule and seeing if it gets a bad smell after some days (although I have no idea how soon
it should it get bad). Then I may be more certain it is NAC.
Thanks!
Posted by JuJuBee: (problems posting from my account...)
DeleteHi, we are almost out of the NOW foods brand of NAC that I purchased before asking my questions on this post. For the first month our NAC capsules had no smell whatsoever and I thought the same as you. I also thought, "Gee, I received a super fresh batch I'm so lucky to have dodged that bullet!" Wong. Within a month the capsules turned to a very stinky smell overnight. It wasn't a slow build-up at all, but a definite change you could not miss if you were trying. I should think freshness should be preserved for longer than 3-1/2 weeks so they must do something to mask the odor that only lasts a short time after exposure to oxygen. We now have spent the past four weeks holding our breath when we open the bottle until we are done swallowing. Lol. To answer one of my own questions, you CAN have a similar effect to garlic in that after taking it, if you did not drink a large amount of water with it you can taste a mild aftertaste of that smell. It's not overbearing, but it is there and I needed to eat something quickly to mask it. Now that we need more, I came back here to retrieve Peter's advice on brands to try. What a wonderful resource this thread is!
We ran out of PharmaNAC and tried Jarrow NAC Sustain instead.
ReplyDeleteSeems to have a similar effect at half the dose (2x 500mg vs 2 x 900mg a day). Odd mixture if you crush and dissolve it..
Anyone else tried this?
Em, we are regular users of NAC Sustain. I also find it more potent than other products. It contains about a third instant release with rest produced over a few hours. The immediate effećt is greater than a 600mg gelatine capsule of NAC. This is a common problem with many supplements, they do not contain what they say on the label.
DeleteCan I cut it and use half and keep the other half for the next dose? Or will it be oxidised? It can be crushed and mixed in water?
DeleteSalempeacock, you can easily cut in half and crush it. It does not dissolve in water in the nice way the effervescent tablets do. I am sure you could mix the powder with a spoon of apple sauce or something the child does like. I am sure you could use the other half later in the day, but best to wrap in some foil.
DeleteThis article saved me. Thank you very much. I had a "surprise" in the form of bloody urine after taking spoiled NAC. The smell for me is kind of like asian toasted sesame oil, I mean the smell of my urine if the NAC is bad. It must have affected them because now I have protein in my urine, etc.. so I don't think spoiled NAC is just worthless, I think it's harmful. I'll know from now on to buy the smallest possible bottle and not open it until I'm ready to finish it within a month. It worked so well while it was odorless! I hope they come up with a way to stabilize it or to provide some other precursor for Glutathione. Apparently I now have a UTI, for the first time in years! Still waiting to see if it's a UTI or some other issue. This is scary.
ReplyDeleteI'm getting to the point where I distrust some supplements. I think I'll stay away from vitamin stores. I think the pharmacy brands do more QC right now. It used to be the opposite until the mom and pop health food stores closed and now we have supermarket style "health" stores. If our world is so "modern" then how come we compromise quality for the God of "Economy of Scale"? That's not progress.
Of course pharmacy brands are regulated properly so you have better quality across the board, however quality brands like Jarrow, AOR, Thorne, and even less expensive companies like NOW are pretty good. The worst NAC I ever got was from a compounding pharmacy who filled capsules themselves, and my current past date Organika brand smell fine, I have also used AOR with good effect. Nootropicsdepot is a good supplier for both bulk and pill forms, and it is from their owner I actually learned why NAC should be handled properly to not degrade. Previously I thought the strong sulfur smell was desirable.
ReplyDeleteHi Aspie 1983, I was wondering if you have ever tried something so simple as zinc for hedonic tone. I am under the impression that with 10mg extra zinc my son is doing better. Once I was advised by a researcher neurologist to use 22mg elemental zinc daily for glutamate excitotoxicity. My dose is still too little.
ReplyDeleteOn another note, I seldom take fish oil supplements and although I put on some extra kilos during the winter, my triglycerides are only 43, LDL 66, HDL 110, never before have I seen my HDL so high. Can too high HDL be bad?
Hi Petra, I use zinc 25mg (half a cap of 50mg zinc picolinate), it does help but minimally.
ReplyDeleteL. Reuteri atcc 6475, vitamin d3, vitamin c, coffee (I have a genetic A2R adenosine problem so this is probably why it helps, but the problem is it can give sleep problems).
With regards to HDL, from what I understand is that HDL is higher in women than in men, could you list the lab ranges please?
meant to say those supplements seem to help me the most.
ReplyDeleteHi! When I start talking NAC and carnitene after a few days I noticed that my stool smells like naphthalene.
ReplyDeleteIt's very interesting what you wrote but I don't think you are right. I did some research about the NAC's odor on the web and what I found indicates that the nasty smell is pretty normal. I found clinical study where they described NAC's sulfur odour as a problem for some patients .
ReplyDelete"Because of its sulfur moiety, NAC has a putrid rotten-egg smell and taste, which can cause patients to experience nausea and vomiting and become intolerant of therapy." I don't think that they would use cheap low quality NAC for the study.
NAC is not very heat stable and if your NAC powder is made in China, goes by container ship to the US, sits in a steel container in the sun for a while and then goes to a warehouse in California in the summer, before eventually being put in gelatin capsules, it is not surprising that it has began to decompose. Autism researcher Manuel Casanova and others have studied the actual contents of store-bought NAC and found it has mainly broken down. The tell tale sign is the smell of H2S.
DeleteIf you open an old sachet of NAC is really stinks, whereas a new one has just a mild smell.
NAC made (and stored) under pharmaceutical conditions and made into solid tablets minimizes these issues. My NAC Sustain tablets and Fluimucil tablets have no smell of rotten eggs, which is why they are more potent.
I've used two different brands of NAC - Swanson regular NAC in capsules and Nootropics NAC in bulk powder. Neither of them had any smell and the taste of the powder stirred into water was like that of vitimin c (ascorbic acid) very tart. I assume something is wrong with the ones that smell.
ReplyDeleteBest form I've used of NAC is Pure Encapsulations. Their formulation combines it with ascorbyl palmitate, which is a form of vitamin c that can cross the blood brain barrier. It's never had any smell and has a better taste, probably due to less smell. It's costlier, but my son drinks it without fuss in juice, so I spend extra knowing it will go down easier.
ReplyDeleteMKate
thank you very much for a valuable article and interesting discussion. Received today a shipping from VitaCost with NAC branded by VitaCost. I never encounter anything smelling as bad as that NAC. Will definitely try brands recommended in this article and discussions
ReplyDeleteNAC should not smell unless it has degraded to release H2S, which is what smells like rotten eggs. How much has degraded and therefore how well it will work is another question, but in general the worse it smells, the more of it has broken down. NAC is pretty unstable in the presence of Oxygen, so some degradation is inevitable as soon as you open the bottle, but it is not a desired outcome - don’t believe any company that tells you otherwise. Thank you Kat for the Vitacost tip - I was just about to order some. I’m a chemist, BTW.
ReplyDeleteHi Peter,
ReplyDeleteMy daughter had positive response to NAC. Giving NAC Pure Encapsulation
3 times a day 600mg each. From her metabolic markers as per organic acid test, she has oxidative stress (high lipid peroxides) so think perhaps is why NAC did help.
also thinking, we also got high arsenic from challenge urine test (DMSA), which make me think whether NAC helps through detox mechanism by boosting glutathione. However, from organic test, she had low glycine which key along with NAC for glutathione for detox. i wonder whether i should add glycine - either via DMG (in combo with folinic) or Mg-biglycinate? maybe glutamine too, which should help for both GSH and her dysbiosis. am i complicating or overthinking? Appreciate your thoughts.
thanks
Timur.
Timur, some people like organic acid tests. If it leads to an effective treatment then great.
DeleteThe most useful tests would be using spinal fluid, because it tells you about the brain rather than blood or urine. This is often left until adulthood, so a lot of time has been lost.
DMG and TMG are widely used and may be effective for different reasons. The simple solution is to just make a lot of trials and not overthink things.
Peter,
DeleteAssuming there are no insurance issues, is it beneficial to get a proactive lumbar puncture? My son, Vik is 4 and there is a suspected autoimmune component to autism diagnosis. Would like to hear your opinion on this.
Regards,
Anvesh
Anvesh, at one extreme is mainstream medicine which, in most countries, offers zero testing of any kind. The logic is that if there are no therapies, then why bother with any tests. The next along is genetic testing after the first child with autism is born, so as to advise whether or not subsequent children might also have autism; this makes sense. There is a cottage industry in the US offering numerous blood/urine/saliva tests that are used by the MAPS/DAN doctors.
DeleteWhen I met Dr Frye, I did ask him how often he uses MRIs and spinal taps. The answer was very rarely, because these are difficult procedures for kids with autism. Indeed, you would require a general anesthetic and then you could do both procedures. You would then know with much more certainty what is going on inside the brain.
I met one parent of a now adult with autism who was angry they had to wait for so many years to finally get a spinal tap and finally identify, with certainty, a key features of her son’s autism.
You really need a University hospital setting for these tests, because you need to know what to look for on the MRI and you can also makes some special tests at the same time using fMRI, if you plan ahead. Having obtained spinal fluid you would need to know all the possible tests that might be insightful. None of this is easy and that is why it is not a standard procedure, instead people are sending hair samples off for heavy metal analysis etc.
Hi Peter, can i ask your view about Glynac, glycine and NAC combined, do you see it superior to NAC only?
ReplyDeleteI am giving DMG, along with NAC, but wondering whether i should try Glycine+NAC as done in studies.
Thanks
Timur
Timur, to make the key antioxidant GSH you need 3 amino acids, cysteine, glutamate and glycine.
DeleteNAC is both an antioxidant and a provider of cysteine. Nobody really knows which is the most important in treating autism.
I suggest you experiment and find what works best in your case.
Thanks Peter, i will give it a try and see what the effect is.
DeleteAs I researched it, one comment got me worrying about glycine was: “glycine binds to the receptor in brain, causing chloride ions flow into neurons, ultimately inhibiting its activity.” Wouldn’t this impact cognitive function then?
glycine kicks out glyphosate, its good for everyone
DeleteAnyone here from the UK using NAC? If so what brand do you recommend? Thank you.
ReplyDeleteI have depression and sometimes I take NAC together with glycine, because I read that this combination, GlyNAC, may work better at increasing glutathione concentrations
ReplyDelete