Our reader in Canada, AJ, did highlight a case series from Norway that showed that high dose Betaine/TMG was effective in improving functioning in people with autism due to creatine transporter deficiency. The use of Betaine/TMG was really just stumbled upon and the authors considered what the beneficial possible mode of action could be.
Betaine (TMG) and Gene Therapy as potential alternatives to Bumetanide Treatment in Autism?
The effect was only present at high dose (7-10 g a day) not
the much lower dose used by some DAN/MAPS doctors, who do prescribe TMG and the
closely related DMG.
The paper suggested that one possible effect might have been
lowering chloride levels within neurons.
This is also the effect of Bumetanide.
AJ suggested that Betaine/TMG might be an alternative to
Bumetanide and one that does not need a prescription.
Our reader Nancy reported a benefit in her adult son.
The question is not whether or not high dose TMG is a
useful therapy, we already know that it is, in some cases. The question is
whether it is a bumetanide alternative.
My conclusion is that high dose TMG does not seem to be a
bumetanide alternative. If it was an
effective alternative then I would be suggesting everyone using bumetanide
should go and buy some.
I did try TMG for s couple of weeks and did not see any
additional effect over the continued therapy of 2mg of bumetanide. In our case there is a benefit from
additional bumetanide/Azosemide. If TMG shared the same mode of action as
Bumetanide then 7g TMG + 2mg Bumetanide should show some improvement over 2mg
Bumetanide. It did not.
There is a long list of other modes of action to explain
why Nancy’s son and the two Norwegians improved.
Low
dose Ponstan for sound sensitivity
Low dose Ponstan (Mefenamic Acid) was proposed as a
treatment for sound sensitivity. Within
Europe it seems that Greece is the place to buy Ponstan; it is sold OTC and
cheap. One pack (15 x 500mg) costs less
than 2 USD/EUR.
In some people the effect of 250mg lasts all day, while for
others it lasts for a few hours.
Ponstan is also widely used as a syrup to reduce fever in young children (antipyretic).
In the US the common brand name is Ponstel, but the price is
dramatically higher.
Galavit
+ Cromolyn Sodium
The combination of the common mast cell stabilizer Cromolyn
Sodium, used by many readers, with a Russian drug called Galavit is used by at
least two readers. Dragos recently told us that the combination has put an end
to his adult son’s aggressive behaviors.
Galavit has multiple anti-inflammatory modes of
action. It is not a mast cell stabilizer
like Cromolyn Sodium.
Galavit is not expensive, but may hard to get hold of.
It does look like there is an overlap between responders to Verapamil and responders to Galavit. So, if you respond well to Verapamil but get one of the rare side effects, like Maja’s daughter, it might be worth investigating further.
Humira
Humira is a TNF alpha inhibitor
normally used to treat auto-immune conditions like rheumatoid arthritis, Cohn's disease,
ulcerative colitis, psoriasis and juvenile arthritis.
I was recently contacted by an Aspie
lady with auto-immune conditions, who found Humira not only controlled those
conditions but moderated her autism symptoms, notably sound sensitivity. One injection produced a benefit that lasted
7 weeks.
Kanner’s subject #1 went on to develop
juvenile arthritis and this made his autism much worse. There was no Humira back in his day, but his
arthritis did respond to treatment.
Apparently, many children with autism and GI problems are taking Humira.
IVIG seems to be the “go-to” therapy
for immunomodulation in autism. It is now
quite commonly used in the US, but much less so elsewhere due to the cost.
I wonder if Humira might be an
alternative for some?
HMB
(β-hydroxy-β-methylbutyrate)
Our reader Natasa did mention the sports supplement HMB to
me.
It has many interesting modes of action and it is a
precursor to the ketone BHB, which has been covered in great depth in this
blog.
Ketone Therapy in Autism (Summary of Parts 1-6)
In Europe ketone supplements like BHB fell foul of the
rules on supplements and have been banned. In the US they are widely sold.
If you want to try BHB, by cannot buy it in Europe, you might want to look into HMB (β-hydroxy-β-methylbutyrate).
Cetirizine for Palilalia/Scripting
I am a big fan of the OTC
antihistamine Cetirizine/Zyrtec and I was interested to read the recent comment
below about its effect on one 12-year-old boy.
“I realize this is 5 years old, but as a
result of this blog, I tested cetirizine on my 12 yo yesterday. He has a
nonstop palilalia (obsessive speaking that is nonsense or only makes sense to
him). It's his "chief feature" and inhibits social development. For 4
glorious hours, it went away. Today, I gave him 5 mg of Zyrtec again. Yet
again, the palilalia went away, AND he had strong focus on school (he has
serious attention issues).”
Many
people’s autism gets worse when auto-immune conditions flare up. In some cases, the auto-immune condition is
very mild, but the consequences are not.
For one person the result is aggressive behavior, while in another it is
talking nonsense.