Doom Scrolling vs Taking Action - more Game Changers

 

Arnie (in the brown jacket) fixing a local pothole

Source: https://twitter.com/Schwarzenegger/status/1645886847342743552

  

Some actors can act and some cannot

I recently went to see Keanu Reeves in John Wick Chapter 4 with both of my sons. Big brother thought it was great, like a three-hour non-stop video game with Keanu Reeves laying waste to hundreds of villains. My view was that there was almost no dialogue. I have more dialogue with Monty, aged 19 with classic autism, than Reeves has in this film. It was rather like watching a film with Sylvester Stallone or indeed Arnold Schwarzenegger. For Monty I think the best part was probably the popcorn.

Big brother told me that Arnie can act, that is why he also made films like Kindergarten Cop.  That apparently is acting.

There is no doubt though that Arnie is a man of action, as well as being an action man.

I just got a link to him fixing a local pothole.  It is on his twitter feed. Not quite sure why I received it.

I forwarded the link to Monty’s Big Brother.

What does Dad have in common with Arnie?  We both go out and fix the pothole outside our house – the one that nobody wants to come and fix.

In our case I brought several bucket loads of steaming hot asphalt to fix the road. Arnie and his helpers used a few bags of cold repair asphalt – which looks a lot less bother.

When I went twice in search of asphalt, I explained to the road crews laying asphalt with a big machine that I just wanted a few bucket loads to repair an annoying hole in the road in front of our house. Both times the initial story was “you can’t do that ... you cannot fix the road yourself”. My approach, like Arnie’s, was “just watch me”.  The second time one of the road crew actually came to help.  Since then the whole road has been resurfaced, so my asphalting days are likely over.

 

Doom Scrolling

Even if you are not aware of the term "doom scrolling", if you have a smartphone you are probably already doing it.

 

Doom scrolling

The practice of obsessively checking online news for updates, especially on social media feeds, with the expectation that the news will be bad, such that the feeling of dread from this negative expectation fuels a compulsion to continue looking for updates in a self-perpetuating cycle.

 

It is similar to the echo chamber

In news media and social media, an echo chamber is an environment or ecosystem in which participants encounter beliefs that amplify or reinforce their pre-existing beliefs by communication and repetition inside a closed system and insulated from rebuttal.

 

These days many people have got hooked on reading about problems, rather than solving them. Severe autism being one such problem.

 

Taking action in Autism

I recently was contacted by a Dad who has been treating his child with autism for a few years.  He probably does not fix potholes like me and Arnie, but he does like to fix autism.  He is doing rather well.

He read my book and contacted me.  His very extensive investigation and trials resulted in his personalized therapy.  These were his game changers:-

 

SSRIs

Fluvoxamine         to treat OCD and improve cognition

(Luvox)

 

Antifungals

Fluconazole          The single most effective intervention. 

 (Diflucan)            It just lifted the fog.

Itraconazole 

          
Nystatin  

Antiviral

Valaciclovir (Valtrex)   

       

Antibiotics
Rifaximin               used extensively

 

Bumetanide             Improves cognition.

The antifungals and Rifaximin have the similar effect in terms of more situational awareness, “presence” and ability to interact.  Bumetanide improves cognition.

 

Vitamins

B1 (Sulbutiamine)   high doses (800mg) quickly solved the longstanding feeding problems like chewing and swallowing, the stubbornness (e.g. refusing to go through a door)

Another form of B1 has been covered in this blog. Benfotiamine was proposed by our reader Seth in 2016 and he wrote a guest post about it.

Benfotiamine for Autism

A researcher/clinician called Derek Lonsdale wrote about the potential to treat autism with vitamin B1. 

B6  high doses (> 150 mg a day) are essential to avoid explosive rages. 

Vitamin B6 with magnesium is an old autism therapy that was made popular by the late Bernie Rimland. Rimland founded and directed two advocacy groups: the Autism Society of America (ASA) and the Autism Research Institute. He was the force behind Defeat Autism Now! (DAN). 

Bupropion is transformative, but the effect unfortunately fades in 5 days. 

 The mechanism of action of bupropion in the treatment of depression and for other indications is unclear. However, it is thought to be related to the fact that bupropion is a norepinephrine–dopamine reuptake inhibitor (NDRI) and antagonist of several nicotinic acetylcholine receptors. It is uncertain whether bupropion is a norepinephrine–dopamine releasing agent. 

L type calcium channel blockers helped but Nimodipine caused side effects with gum inflammation; this is a well-known possible side effect.

 * * *

Fluconazole and Rifaximin are quite popular therapies in autism and certainly tell that something is amiss in the intestines.  In the US Rifaximin is very expensive and so you will see Vancomycin used.

In Singapore one of the US-trained MAPS (autism) doctors recently got in trouble prescribing Fluconazole/ Diflucan and Vancomycin to young children with autism. The kids' pediatricians heard what he was prescribing and complained to the medical regulator. 

 

Doctor ordered to temporarily stop prescribing antibiotics, antifungal medication to children after specialists complain

Dr Erwin Kay Aih Boon, a general practitioner in private practice at Healthwerkz Medical Centre, had prescribed antibiotic Vancomycin and antifungal medication Fluconazole – trade name Diflucan – to children with autism.

It comes after four paediatricians in a hospital, which was unnamed in the grounds, complained to the Singapore Medical Council (SMC) about Dr Kay’s management of children with autism.

They said his management of the children were “not based on evidence”, the grounds read.

“Hospital A’s paediatricians were of the view the use of antibiotics and antifungal agents for the treatment of children with (autism spectrum disorders) was unnecessary and had the potential for harm,” said the committee in its grounds.

 

Conclusion

It is rather addictive reading the news that appears on your phone.

Making your own news, even if you choose not to share it with the wider world, looks like a better option.

I was asked by one person who reviewed a draft of my book, why do I not include a collection of autism treatment case studies. I explained that most people who have been successful do not want to publicly share their results.  That is a pity, but it is human nature – why take an unnecessary risk? Even Dr Kay in Singapore gets himself into trouble, just trying to help other people.

In spite of there being no autism treatment gazette with hundreds of detailed case histories for parents to look through, there are nonetheless many clues in the published research.

The key point is that therapy needs to be personalized. Antifungals, antibiotics and antivirals might do wonders for one person, but do absolutely nothing for your child.    

The worst problem of all can be aggression and self-injurious behavior; vitamin B6 clearly works for some, but most people will need one of the numerous other therapies.

 

Benfotiamine for Autism

by Seth Bittker

In recent decades populations of wild bird species in the Baltic Sea have been dying off in large numbers from a paralytic disease.  When some of the birds with signs of this disease are given thiamine, they rapidly improve.  So it would appear the immediate cause of these large scale population decreases among the birds of the Baltic is thiamine deficiency [1]. The same thing appears to be happening to large mammals like elk [2].

Setting aside the question of underlying cause, could it be another mammal high up the food chain also has many members of its population suffering  from thiamine deficiency?  There is no good standardized test for thiamine deficiency that does not involve supplementing with thiamine.  So whether individual humans are somewhat deficient in thiamine is not obvious.  However, a particular constellation of symptoms was recognized as the disease “beriberi” before it was understood that the underlying cause was thiamine deficiency.  And what are the signs of beriberi?  The symptoms are variable but some that have been observed are mental confusion, irritability, difficulty moving, loss of sensation, loss of muscle function, rashes, involuntary eye movements, digestive issues, abdominal pain, and sometimes lactic acidosis [3].

Many of these symptoms match the symptoms of some with autism.  So one might naturally wonder whether some cases of autism are in fact unrecognized cases of beriberi and perhaps more likely that thiamine deficiency could play a role in other cases of autism depending upon other genetic and environmental factors.  A Dr. Luong and Dr. Nguyen previously noticed this similarity and developed this idea into a paper from 2013 which is available here [4].

Pulling from their Abstract:

“A relationship between thiamine status and the development of autism has been established, with thiamine supplementation exhibiting a beneficial clinical effect on children with autism. Thiamine may involve in autism via apoptotic factors (transcription factor p53, Bcl-2, and caspase-3), neurotransmitter systems (serotonin, acetylcholine, and glutamate), and oxidative stress (prostaglandins, cyclooxygenase-2, reactive oxygen species, nitric oxide synthase, the reduced form of nicotinamide adenine dinucleotide phosphate, and mitochondrial dysfunction). In addition, thiamine has also been implicated in autism via its effects on basic myelin protein, glycogen synthetase kinase-3β, alpha-1 antitrypsin, and glyoxalase 1.”

A researcher named Derrick Lonsdale found in 2003 that a set of 8 of 10 children with autism had clinical improvement on suppositories containing thiamine tetrahydrofurfuryl disulfide (TTFD), a thiamine derivative [5].  There was no control group on this study.  So one should be cautious when interpreting these results.  In addition Lonsdale was interested in metals excretion – TTFD can serve as a chelator.  He found that TTFD increased excretion of such toxic metals but it also would increase thiamine levels as well.

I have not experimented with TTFD, but Lonsdale’s work did get me thinking about oral supplementation of thiamine.  I tried experimenting with my son on regular thiamine hydrochloride.   I thought there may have been a very modest effect in terms of increasing his energy but it was not a sizeable effect.  However, there are other forms of thiamine.  One lipid soluble form that has been used with some modest success in diabetic neuropathy is benfotiamine [6].

There are case reports of neuropathy in cases of autism [7].  In addition one symptom of some with autism that are significantly affected is arm flapping.  It seems to me a person may flap his arms if he is feeling numbness and he is trying to get blood flowing to reduce the discomfort.  For the same reason somebody who is cold may move his limbs rhythmically.  In other words, I think arm flapping may typically be a sign of neuropathy and that neuropathy is an under-recognized and often comorbid condition with autism.

My son does not have neuropathy, but we did try benfotiamine on him.  My experience is that on it he had a significant reduction in irritability, increased cuddliness, and more energy.  I also feel he was mentally sharper initially but this diminished with higher doses.  Another result was he had flatulence some of which was pungent soon after starting supplementation.  In retrospect I take this as a sign that his digestion was beginning to operate more efficiently and relatedly he may have been dumping xenobiotics into his bowel when starting benfotiamine but this is pure speculation on my part.

After about a week on benfotiamine he got a rash and I began to feel that his mental acuity was leveling off.  I found that if I gave him biotin the rash went away and his mental acuity became sharper again.  Biotin and thiamine are both sulfur containing B-vitamins  and there are genetic diseases where both are involved [8].   My experience with my son suggests to me that there may be some common pathways with these nutrients.  In other words, I think befotiamine supplementation may exacerbate biotin deficiency.  As some may be aware, biotin deficiency is also sometimes seen in autism [9].  So for this reason I think they should be taken together when given for autism.

Thus, if you do a trial of benfotiamine, I would include biotin as well.  I am currently giving my son about 120 mg of benfotiamine per day and 5 mg of biotin per day.  He is about 90 pounds.  I give these to him in a juice smoothie because benfotiamine tastes a bit tangy.  You might also consider providing them in something sweet.

In interest of full disclosure when communicating about benfotiamine in the comment section of a separate post, Agnieska Wroczynska mentioned that benfotiamine had a positive effect on her child but increased hyperactivity.  So she found it was not ultimately helpful, and RG reported no positive affect whatsoever.  So it is possible that the experience that I have had with it with my son is highly unusual.

If you do wish to do a trial, as with any other supplement, start with low doses first to avoid risk and increase modestly if you see positive effects.  I am interested in others experiences with it and hope if you try it you will leave a comment here with some color on the results.

I thank Peter Lloyd-Thomas for the opportunity to write this guest blog and for providing a wonderful forum on autism treatment and autism research.