I wish I'd seen this years ago.
This page only describes how you might actually do the protocol which is described on: The Epiphany ASD Blog
The Epiphany ASD Blog is written by an exceptionally intelligent engineer who has made enormous progress with his own son, mainly using pharmaceutical drugs (his entire family are doctors!). He has incredibly well researched and documented articles on his site.
The post on the Epiphany site describes a paper from a Johns Hopkins doctor which lays out a basic protocol which may make a huge, huge difference to many cases of regressive Autism.
It is relatively easy to trial especially since he advises simply trying Carnitine to see if that makes a difference (it did for us - and we were using it against constipation).
To be clear:
No, nobody is saying this is going to fix all Autism.
But it is saying that, for some kids with regressive ASD, this can be the fix.
It's very simple to try so that's why it should be tried ASAP.
The idea is that you try the L-Carnitine only.
L-Carnitine. Not Acetylcarnitine. If it was the Acetyl form the paper would say that. It does not.
Please do not assume that if you've tried the Acetyl form and seen no response that you have tried this protocol.
I can think of nothing wrong with trying both if you do not see a response but it is the L-Carnitine that is specified.
If you see an immediate improvement in focus, attention and mood then it very is likely that the other things all need to be used as well.
If you see an immediate improvement (that appears to mean within a day or so) then you should try the other supplements.
If you don't see an immediate improvement you are probably done here (particularly if you see an increase in aggression). But make a note to come back later (especially once the gut is better!) and try it again.
It is not a matter of then picking some of the other things and trying them too. The L-Carnitine alone is the test. But if that seems to help bring in the rest.
It's like baking a cake.:
You can't bake the flour one day and see if that makes a nice cake.
Then bake the butter the next day and see if that makes a nice cake.
The L-Carnitine on its own makes a nice bit of "icing"! So see if it works first.
Here is the post on the Epiphany blog. Please, please read it. The rest of this page only deals with my thoughts on how it might be done.
https://epiphanyasd.blogspot.com/p/regressive-autism.html
Note: The link to the original paper is a little hard to spot so here it is specifically:
Evaluation and Treatment of Patients with Autism and Mitochondrial Disease
I'm not going to repeat what that article says. Instead, I've laid out my thoughts of sourcing the supplements and dosing (dosing is taken from the paper!).
I've made a Carnitine For Autism Calculator that can help you check how much of each supplement is needed.
As above: use L-Carnitine rather than Acetyl-Carnitine.
We have used Jarrow (Tartarate) successfully. It tastes fruity and tangy and not unpleasant (I tried a Nature's Best, Fumarate form and it had a nasty after-taste).
https://www.iherb.com/pr/jarrow-formulas-l-carnitine-500-mg-100-veggie-caps/136
Dose called for: 50 mg per kg
Example for a 20 kg child: 1000 mg = 2 caps
BUT See the warning below, regarding TMAO.
This is the only CoQ10 I'd like to use since this is the only brand that Dr Peter Attia's team found to actually make any difference to blood levels of CoQ10 (and he's pretty annoyed about it! They tested every one they could find on their patients):
https://www.iherb.com/pr/jarrow-formulas-ubiquinol-qh-absorb-200-mg-30-softgels/15094
Dose called for: 10 mg per kg
Example for a 20 kg child: 200 mg = 1 cap
I am already giving some of this via the B50 (RightSleep protocol) but this calls for more (with a child you'd probably be starting with 25mg but would titrate later - see that page).
I'd go with Jarrow as always!
https://www.iherb.com/pr/jarrow-formulas-pantothenic-acid-b5-500-mg-100-veggie-caps/276
Dose called for: 10 mg per kg
Example for a 20 kg child: 200mg
Yes, I know, ACC folks will freak out but there are plenty of parents that have used ALA with great success without dosing it on the half-life (as ACC calls for). Including one of the moderators of the Recovering Kids Facebook group, who says it was the key part of her daughter's progress
Dose called for: 10 mg per kg
Example for a 20 kg child: 200 mg
Note: This is NOT marked optional but it can look like it is because the text on the Epiphany site wraps badly!
Many of our kids react very badly (gut cramps and the runs) to most VItamin C. That's probably because most C is made cheaply and contains contiminants from the mould that's used to produce it (yes, really). This brand specifically uses a very clean process (and doesn't taste bitter to me - like cheap ones do):
https://www.iherb.com/pr/ecological-formulas-vitamin-c-1000-90-capsules/55955
Dose called for: 30 mg per kg
Example for a 20 kg child: 600 mg
Note: This is NOT marked optional but it can look like it is because the text on the Epiphany site wraps badly!
Vitamin E is tricky because the form most commonly sold: "tocopherol" is arguably not one that anyone should be taking. It's been shown to increase all cause mortality in studies (yes, increase. Not decrease).
However, taking the correct form: "tocotrienol" does have demonstrated health benefits. It's hard to find and the only one I know of is by Researched Nutritionals:
US manufacturer's site: https://www.researchednutritionals.com/product/tocotrienols-tocopure-dg-gmo-free/
UK site: https://www.amritanutrition.co.uk/products/tocopure-d-g-high-potency-tocotrienols-60-softgels
EU site: https://amritanutrition.com/products/tocopure-d-g-high-potency-tocotrienols-60-softgels
Note: We seemed to see a really marked improvement in cognition using this.
Dose called for: 25 iu per kg
Example for a 20 kg child: 335 mg = 1.5 gelcaps (perhaps 1 on day one, 2 on day 2, repeat).
Note: This is marked optional (the Vitamin C is not - but it can look like it is because the text on the Epiphany site wraps badly!)
This is the standard Vitamin B3 but I wonder if the famous NMR (Tru Niagen - Nicotinamide Mononucleotide Riboside) would work even better or perhaps in addition to normal B3?
iHerb have started doing a Nicotinamide Mononucleotide (NM - I can't say whether that "Riboside" part is critical or how it differs);
Thorne do an NR (Nicotinamide Riboside) :
https://mass-zone.eu/en/thorne-niacel-400-nicotinamide-riboside-60-vegetarian-capsules-p-6875.html
Note that NMR goes off easily and becomes rather toxic (it's not going to kill anyone but it's not good for you): Keep in the fridge if you've got it sitting around for a long time (that's according to Dr David Sinclair - author of Longevity).
This tastes foul but as it happens I'm already adding a tiny bit (the rounded end of the capsule) to his morning dose.
Dose called for: 7.5 mg per kg
Example for a 20 kg child: 150 mg
Note: This is marked optional (the Vitamin E is not - but it can look like it is because the text on the Epiphany site wraps badly!)
Note: The TTFD form of B1 that I mention below tastes AWFUL. If you cannot swallow capsules you are better off trying Thiamine HCL or Benfotiamine. Even if you can swallow capsules, if my son took three we could smell it on his breath and he was very distressed (due to the smell) and didn't want to eat any food.
There are essentially four forms of B1:
Thiamine HCL
Thiamine Pyrophosphate (seems less common and usually sublingual lozenges)
Benfotiamine
TTFD
It seems likely that the paper is talking about using Thiamine HCL as that's by far the most common form and if they actually meant Benfotiamine or TTFD it would say so.
Dose called for: 15 mg per kg
Example for a 20 kg child: 300 mg
Each form is absorbed differently and has different bioavailability. Unfortunately there is no way to make a direct dose conversion between them.
Eliot Overton (an Occupational Therapist (OT) who got very interested in B1 after seeing an ASD patient essentially make a full recovery in five days on TTFD. Obviously, he says that's very unusual but...) published a rough comparison of what he sees in terms of effectiveness in his practice:
500-40000 mg of Thiamine HCL
300-1800 mg Benfotiamine
100-1500 mg TTFD
So, assuming the protocol is talking about Thiamin HCL. from the above, I think we could roughly use 66% of the Benfotiamine and 25% of the TTFD (TTFD looks like 20% for the starting point but take a look at the range - much larger than the others). The Carnitine For Autism Calculator has these approximations worked out.
However, since there is no direct dose equivalence between the forms there's no way to know this for sure. It's just an approximation.
Also, do not assume that Benfotiamine is always better than Thiamine HCL and that TTFD is always better than them both. Generally speaking that may be true but Overton stresses that some people react little to any one of them (perhaps TTFD) but very well to another (perhaps Thiamine HCL). It's individual.
If you want more on Eliot try a summary version of a podcast he was on or even the full length version.
He also has a very good and quite short ebook which explains the full protocol:
He also sells a very pure TTFD: https://www.objectivenutrients.com/products/thiamax-uk/
Unfortunately this is one of the worst tasting things I know of and the taste doesn't stop! So you may want to go for the Thiamine HCL or Benfotiamine.
Dose called for: 15mg per kg
Example for a 20 kg child: 300 mg = 3 caps! (Make sure you work up to this and do not start there!)
L-Carnitine supplementation can shift the bacterial population of the gut into producing TMAO.
TMAO can exacerbate core ASD symptoms, badly. This has been well studied.
So this needs to be watched carefully because initially, L-Carnitne may improve things before the bacterial population shifts, TMAO is produced and things unwind.
But you might miss that the L-Carnitine is the cause because the worsening of symptoms will be some time after starting supplementation.
I wondered if there was a way around this - so I asked an AI:
Is there likely to be a dose, below which, the L-Carnitine is more completely absorbed before it has a chance to overfeed the gut bacteria and change the microbiome?
There is a theoretical threshold—around 20 mg per dose—below which L-carnitine is almost completely absorbed and unlikely to “overfeed” gut bacteria. However, that dose is far below any clinically useful level, so in practice all standard supplement doses will overflow the transporter and leave a substantial fraction of L-carnitine available for microbial metabolism.
However it might be feasible to use ALCAR (Acetyl-L-Carnitine) instead. Since ALCAR is taken up by the gut far more efficiently, giving bacteria far less chance to use it.
L-Carnitine can increase TMAO production in the gut. Elevated TMAO can cause an increase in aggressive behaviours.
So if you see that and it's not tolerable, it's likely that you need to do more work to improve the state of gut health. Make a note to come back to try this again after you do that.
Also, supplemental Carnitine can increase seizures in some people so obviously be wary of that.
If you are dealing with seizures you may want to consider L-Carnosine (OSINE not ITINE) as that has been shown to have an anti-seizure effect.