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Wednesday 4 August 2021

Eubiotics for GI Dysfunction and some Autism

  


Today’s post is about some drugs/supplements that have already been discussed in earlier posts.  Rifaximin, used in cycles, is an effective part of our reader Maja’s therapy, while Sodium Butyrate was highlighted long ago by our reader in Switzerland, Alli.

I had a consultation with a gastroenterologist last week and came away with a prescription for Rifaximin, microencapsulated Sodium Butyrate and Lactobacillus Plantarum 299v. Where we live, these are all inexpensive. Rifaximin is an antibiotic with extra benefits and costs about 7 euros (9 dollars). 

A course of Rifaximin can cost $2,000 in the United States.

I was pleased to read that the private equity owners of a pharmaceutical company that raised the price of a common thyroid drug by 6000% have just been fined $140 million in the UK.


Advanz Pharma and former private equity owners were fined £100m by markets watchdog


Perhaps some of our US readers should query the crazy price of drugs in the US with their congressman? Very many cheap old drugs are ultra expensive in the US, even insulin is over-priced. Not a good model of a market economy. 

 

Eubiotics – a big business

You may very well never have come across the term eubiotic before, but it is already a multi-billion dollar business.  A eubiotic is something that changes the gut microbiome to improve health. The big business to date are additives to animal feed, rather than products for human health.

Eubiotics work for humans as well. Rifaximin is an antibiotic but it also has the additional properties of a eubiotic. 

“These include: modulation of the microflora of the gastrointestinal tract by promoting the growth of Lactobacilli and Bifidobacteria strains (the so-called “eubiotic” effect) as well as modulation of bacterial metabolism, including inhibition of the hydrocarbon-derived pathways.  This drug is also capable of reducing the virulence of enteropathogenic Escherichia coli strains by inhibiting the expression of enterotoxins or adhesive factors. Interestingly, Rifaximin is distinguished by several anti-inflammatory activities mainly exerted by the pregnane X receptor (PXR), expressed primarily in the gastrointestinal tract, the small intestine, and the colon. Due to the activity described above, Rifaximin is called a eubiotic, not an antibiotic.”

Source: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5497137/

Rifaximin, like vancomycin, is usually thought of as a GI antibiotic; it stays in your gut and almost none ends up in your blood.  Both drugs are used to kill off bacteria in your gut. This is all vancomycin does, so it is not classed as a eubiotic. Rifaximin, however, goes on to perform further functions as a eubiotic, so it models your gut flora in a beneficial way.

Rifaximin is almost a wonder drug for IBS-D (irritable bowel syndrome with diarrhea).  It is also a common therapy for SIBO (small intestinal bacterial overgrowth), but while it works well for some, it actually makes things worse for some others.

Rifaximin is used both as a therapy for an acute GI problem and preventatively. It can be used in cycles, like a few days every month.

Maja is in a good position, because where she lives Rifaximin costs a few euros/dollars.

People with IBS-D in the United States often cannot afford monthly cycles of Rifaximin.

Other kinds of eubiotics include prebiotics, other probiotics, all kinds of clever fiber, inulin, fructooligosaccharides (FOS), galactooligosaccharides (GOS) etc.  I did cover psychobiotics in an earlier post, these are probiotic bacteria that are used to reduce anxiety, ADHD and other psychiatric symptoms.

Psychobiotics (PS128) for Autism, Stereotypy and Sometimes Effective Therapies for what might be SIBO (Rifaximin and Herbal)

  

Sodium Butyrate

Sodium buyrate produces butyric acid when you swallow it.  Butyric acid is what gives rancid butter its smell.  Butyric acid is one of the big eubiotics used in the animal feed industry. I did cover the very old Japanese probiotic MIYAIRI 588 (full name is Clostridium butyricum MIYAIRI 588) a long time ago in this blog.  This probiotic, in use since the Second World War, produces butyric acid in your gut by fermentation.  In Japan this probiotic is used in humans and more recently as an additive to animal feed, to produce healthier, bigger, chickens and pigs. 

Our reader MG in Hong Kong recently reported that MIYAIRI 588 was beneficial in his case. 

My gastroenterologist prescribed me Microencapsulated Sodium Butyrate, which is covered in the research and has encouraging results. When you see the word microencapsulated, you might start feeling some pain developing in your wallet, rather than in your gut, but again, this product called Integra and made in Poland,  was not so pricey - about EUR 10 ($12) for 60 capsules. One capsule contains 150 mg of sodium butyrate in tiny particles covered in triglycerides.  I have no idea if it is going to do me any good, but the research suggests it is beneficial for certain types of GI dysfunction and will strengthen the intestinal gut barrier (the equivalent of the blood brain barrier). 

Butyric acid has several different modes of action, one is as an HDAC inhibitor, which was covered in earlier posts. HDAC inhibitors can change gene transcription, which is potentially very useful, including in the prevention and treatment of some cancers. The potent HDAC inhibitors from cancer therapy show effect in some types of single gene autism.

Autism-Like Social Deficits Reversed by Epigenetic Drug 

There are different classes of HDAC inhibitor and you would need to match the type of autism with the appropriate type of HDAC inhibitor.  Valproic acid is another common HDAC inhibitor sitting on the shelf of many people with autism plus epilepsy. 

Lactobacillus Plantarum 299v 

Lactobacillus plantarum 299v has been shown to improve symptoms of IBS (Irritable Bowel Syndrome).  It prevents Clostridium difficile-associated diarrhea among patients receiving antibiotic treatment.  It is also known to be immunomodulatory, shifting the balance away from pro-inflammatory cytokines.

The role of Lactobacillus plantarum 299v in supporting treatment of selected diseases 

Alterations in composition of human gut microbiome can lead to its dysbiosis. It is associated with gastrointestinal side effects during anti-cancer treatment, antibiotics administration, or infectious agents. There are studies confirming positive effect of consuming Lactobacillus plantarum 299v on intestinal microflora. This review summarizes the current knowledge about the role of L. plantarum 299v in supporting treatment of selected diseases, such as cancer, irritable bowel syndrome (IBS), and Clostridium difficile infection. The immunomodulating properties of L. plantarum 299v include an increase in the level of anti-inflammatory cytokines, which reduce the risk of cancer and improve the efficacy of regimens. The intake of L. plantarum 299v provides benefits for IBS patients, mainly due to normalization of stool and relief of abdominal pain, which significantly improves the quality of life of IBS patients. In addition, the intake of L. plantarum 299v prevents C. difficile-associated diarrhea among patients receiving antibiotic treatment. Due to the limited possibilities of treating these diseases and numerous complications of cancer treatment, there is a need for new therapeutic strategies. The administration of L. plantarum 299v seems to be useful in these cases. 

 

Bacteria could aid autistics

Might a daily dose of friendly bacteria help treat autism? UK researchers hope probiotics will soothe the gut problems linked to autism and may even ease psychological symptoms. They are planning a clinical trial to test the idea.

The proposed health benefits of probiotic bacteria are well known. The beneficial bugs are thought to out-compete other gut bacteria that can cause diarrhoea and ill health.

Children with autism are known to have higher levels of one group of 'bad' bacteria, Clostridia, in their guts, explains Glenn Gibson from the University of Reading. So he hopes probiotic food supplements that lower levels of Clostridia will allay some symptoms of autism.

He is not suggesting that the bad bacteria cause autism: genetic and environmental factors are both likely to contribute to the complex disorder, the cause of which is unknown. But toxic by-products of the bacteria may be absorbed into the blood and travel to the brain, where they may play a role in ill health.

At present, the researchers are honing their choice of bacteria. There are many different types of good bacteria, so it is important to choose one that can compete effectively against Clostridia.

One candidate, called Lactobacillus plantarum 299v, looks especially promising. The bacterium binds to the gut lining and stimulates its growth. As well as out-competing other bacteria, it also lowers gut pH, which helps the digestive tract to fight infection. It stays in the gut for days and has never been associated with any health problems.

 

Conclusion

I am always surprised how many common drugs that you come across have potential to be repurposed to benefit  some people with autism.

It really shows how effective therapy, for at least some people with autism, is already in the medicine cabinet at home, or more likely over at the grandparents’ house.

(statins, calcium channel blockers, asthma/COPD drugs, other blood pressure drugs, diuretics, type 2 diabetes drugs)

I thought my gastroenterologist’s therapy was quite enlightened. I hope his diagnosis is accurate; I am not entirely convinced, but time will tell.  The diagnosis from doctor number one was kidney stones and now I am on doctor number three. An accurate diagnosis is not always a simple matter, as autism parents know only too well.

I did meet Dr Federico Balzola a while back. He is an Italian gastroenterologist with a keen interest in autism. He is an associate of Dr Arthur Krigsman, a US gastroenterologist heavily involved with autistic patients. In some countries the connection between GI problems and autism is still a taboo subject, seemingly because Dr Andrew Wakefield was a gastroenterologist.  

 

I am always surprised how many young Aspies have symptoms of IBS or IBD. I would actually like to know if this is mainly a problem in childhood and adolescence, which I suspect is the case. 


One of my most popular posts was another one about gastroenterology, which really surprised me.


 



97 comments:

  1. What a timely post! I'm currently trying to keep up the excellent results from rifaximin. Unfortunately, constipation makes my symptoms return.

    I have IBS-C, concentration issues (undiagnosed ADHD), autonomic and cognitive issues.

    I'm with your gastro-enterologist. The mechanism could be as follows (my own gastro-enterologist called it 'very plausible'): rifaximin works against urease producing bacteria. These cause an overload of ammonia in the gut, which goes straight through the blood-brain barrier to the brain. Locally, histamine is formed to protect neurons. When histamine binds to the H3-receptor, it may cause neurological, psychological and autonomic issues (such as mine) from lowered dopamine and acetylcholine.

    Very similar to hepatic encephalopathy, but without the liver issues.

    Needless to say, I just bought some L. plantarum 299v.

    ReplyDelete
    Replies
    1. Update: L. plantarum 299v ended up not working. What did work was a combination of two laxatives: macrogol and prucalopride, a serotonin agonist that works in the gut.

      Most of my chronic issues have lifted thanks to this, and I've been able to expand my diet as well, to include more amines, contained in i.e. fermented foods.

      I have now more become more sensitive to salicylates, though. I'm working on that with TRP channel antagonists (been there before).

      All the best,
      Leen

      Delete
    2. Update #2: ADHD-symptoms have completely resolved since I the procalopride at the beginning of September. I take 1 mg a day, combined with 3 sachets of unflavoured macrogol (Movicolon naturel).

      The constipation I need them for is due to remaining salicylate issues. My extra sensitivity to salicylates seems to be due to the climate: no more sun here means no more UVB-rays, which stabilize mast cells. I usually relapse in Autumn.

      Take care everyone,
      Leen

      Delete
  2. Some links to the research:

    Urease and ammonia are generated during urea hydrolysis and may have a role in long-lasting diseases, like atherosclerosis or rheumatoid arthritis [6, 7].
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3816311/

    Significant increase in histamine levels have been documented in patients with hepatic encephalopathy
    https://www.intechopen.com/chapters/67158

    Non-hepatic hyperammonaemia: an important, potentially reversible cause of encephalopathy
    https://pubmed.ncbi.nlm.nih.gov/11677282/

    Ammonia and the histamine H3 receptor
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7052803/

    Some links to your own research:

    Bumetanide works against ammonia toxicity
    https://www.med.uio.no/imb/english/research/news-and-events/news/2014/when-ammonia-becomes-toxic.html

    The Na-K-Cl cotransporter is involved
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2590687/

    GABA-ergic neurotransmission as well
    https://pubmed.ncbi.nlm.nih.gov/15058165/

    So this would tie some things nicely together.

    There's a link to diet as well: some people react badly to fermented food or protein foods that are 'off'. These contain ammonia and amines as well.

    Hope this helps someone.

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    1. Some more links:

      Elevated Fecal Short Chain Fatty Acid and Ammonia Concentrations in Children with Autism Spectrum Disorder
      https://pubmed.ncbi.nlm.nih.gov/22535281/

      Differential responsiveness of cerebellar Purkinje neurons to GABA and benzodiazepine receptor ligands in an animal model of hepatic encephalopathy
      https://pubmed.ncbi.nlm.nih.gov/2854841/

      The combination of certain levels of hyperammonemia and inflammation is enough to induce mild cognitive impairment, even without liver disease
      https://pubmed.ncbi.nlm.nih.gov/22072427/

      The Neurobiology of Hepatic Encephalopathy
      https://www.intechopen.com/chapters/67158

      Neurotransmitter receptor alterations in hepatic encephalopathy: a review
      https://pubmed.ncbi.nlm.nih.gov/23466244/

      Also, check stool pH. It correlates with urease producers. Healthy stool should be slightly acidic.
      https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3580696/
      (higher Staphylococcus and Pseudomonas group counts)

      Delete
  3. Hi Peter, I have, since the failure of response of bumentanide, focused very much on using probiotics and prebiotics to help my now 3-yo kid. His improvements in recent months are noticeable in terms of development language, simple Q&A and the control of temper at home. Repetitive behaviors and restricted interests still persist but compared to 10-mo ago this is day-and-night.

    https://www.clinicalomics.com/topics/translational-research/microbiome/autism-spectrum-disorder-in-children-linked-to-non-diet-influenced-features-of-gut-microbiome/?fbclid=IwAR1YueBtVfdX1EkmFr45woKXJbEvejZqu7qGR3o_Qcc5mG6FgoFqG_riIaA

    I resonate a lot with your post. Apart from Miyairi, I have also used DSM17938 and PS128 daily on my kid. DSM17938 is provided already in his Nestle formula (NAN PRO), while PS128 can be easily bought in Hong Kong. PS128 belongs to the same family of 299v too so I haven't used 299v (which I also have used before) as frequent anymore. PTA 6475 seems to cause agitation, not sure if it is due to the effect on testosterone. I know prebiotics helps too as this is the substrate. But too much of it can cause diarrhea in my son. Also with the very recent CUHK report, it says diet itself does not make the difference between ASD and TD. I think it's key to rebalance guts in ASD kids.

    ReplyDelete
  4. Two reports on therapies - 1. we did 2 months of vitamin A protocol and then added one dose od 12.5mg Urocholine, as in the Meg Megson protocol. We saw an improvement of maybe (could be placebo) 10-20 percent in communication. She had hiccups and was drowsy and irritable so while it might do something it doesn’t outweigh the effects for a daily therapy.
    Also, we received one of the glasses we got prescribed by Pilar Vergara - the ones that stop her toewalking in a second. My husband was not at the initial appointment so he had not seen the effect and he was dumbstruck like me and the asisstant were when we saw it. I made videos showing the incredible difference with and without, but I will make some anonimized ones where she is walking around on a random patch of floor and her face is blurred, so I can share it more widely.
    Basically, put glasses on, firm foot fall and (still) confused looking at her feet, take glasses off, ballet dancer toes. They arrived 2h ago. So far she wears them for 10-15 minutes at a time and then takes them off.
    We gave her a small ball to catch and throw to check if the glasses gave her vision problems, but she was at least as good as she always is, if not better.

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    1. Tajana, how on earth did you come up with the idea to treat toewalking with glasses? I'm dumbstruck just by reading about it.

      /Ling

      Delete
  5. Hi Peter

    Our son showed positive on the FRAT test for binding FRa, wasn`t easy doing this test from the UK, but we at least we have something to work with now & have now eliminated cows milk & now giving Calcium Folinate small doses to start.

    Just trying to research more on what causes these binding Fra`s & other things that can be done in respect to the causes of this like the mitochondria. I believe you wrote on one of your articles something about nitrosative stress (peroxynitrites) that can have an impact?

    Not sure where else to look to treat this? I understand this is still all cutting edge science.

    In respect to this article on stomach bacteria, our son was perscribed Ranitidine for 0 - 8 months from birth so believe this may have played a part in his ASD by messing up his stomach bacteria at a crucial time. But i guess ill never know.

    ReplyDelete
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    1. Ross, it would make sense to follow the Frye/Ramaekers therapy and try high dose calcium folinate. This is the therapy shown to be effective.

      Calcium folinate reduces nitrosative stress, which is another potential benefit.

      Delete
  6. Hi Peter. I was reading a study on Ivermectin that was published last year and saw that its mechanism of action might be of benefit for decreasing the hyperexcitability of neurons in autism, perhaps in low doses:

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7652439/

    The drug has been studied specifically for its ability to increase the hyperpolarization of nerve and muscle cells in invertebrates (obviously not humans) leading to the death of the organism. Now the details obviously matter here as invertebrate biology is quite a bit different then vertebrate biology and I don't know enough here to say if a similar mechanism of action would occur with human neurons to gently hyperpolarize the cells in a manner you might expect from the use of Bumetanide in terms of facilitating more chloride ions into neurons.

    Ivermectin, in spite of what the very dishonest media across the western world says is very safe as it has over 4 billion doses have been given around the world pre-COVID and you can buy it over the counter in many countries. In fact, Pfizer is actually working on their own derivative of Ivermectin, though I expect it will cost literally 100 times more than the current drug. Nevertheless, I think maybe exploring this drug for its possible use in managing intracellular chloride homeostasis in neurons would be worthwhile with respect to autism.

    In the United States you need a prescription to get Ivermectin from your doctor and many are loathe to do that because of the politics of vaccines versus therapeutics, so you can get veterinary quality Ivermectin (basically the same stuff as what humans would get) from farming and equestrian retailers, just you need to adjust the dose since the dose given in the tubes for horses is obviously much larger than that for a human. Now I am not saying anyone should go out and trial this anytime soon as I have not yet followed up on the details as to whether the proposed mechanism of action would help with autism, but it should definitely be investigated in my opinion as a possible repurposed drug that could help a lot of people with autism without sending their family to the poorhouse.

    ReplyDelete
    Replies
    1. Tyler, long before Covid I wrote about Ivermectin as a PAK1 inhibitor. This is relevant to some autism and indeed one parent contacted me when he discovered his adult daughter has the single gene dysfunction that should respond to PAK1 inhibition. Some alternative doctors have long used Ivermectin for autism.

      The research suggests at low doses Ivermectin does not cross the blood brain barrier. At high doses it does.

      The research also looked at Ivermectin for certain types of cancer. For cancer of the esophagus it shows promise and there is little mainstream therapy for this cancer.

      Delete
    2. I was unaware anyone had used Ivermectin for autism at all, nor do I remember you discussing it as a PAK1 inhibitor even though I once went through every blog post you ever wrote back when I found this blog about a decade or so ago (has it been that long?).

      Do you remember what mechanism of action the "alternative doctors" claimed as being beneficial for autism? Was it the PAK1 inhibition or something else like suspected parasites or else for its antiviral properties.

      Delete
    3. Tyler, they use it because they think parasites cause autism.

      There is a Dr Yu with his Ivermectin protocol for autism.

      Delete
    4. GUY, I WANT ASK ABOUT DOSE FOR IVERMECTIN TO CROSS BBB AND WORK WITH AUTISM ?

      Delete
    5. This you would have to ask Dr Simon Yu. He has youtube videos and presentations online. You could also email him.
      Just use Google "Dr Simon Yu autism".

      I think it will help those who need a PAK inhibitor. The question was always about its suitability for long term use.

      Delete
  7. Hi Peter, I found a mini-pharmaceutical lab that can prepare my suramin nasal spray, but they want a prescription or formula with the amount of suramin from a doctor. Is there anyone who can give us a formula with the amount of suramin to add? in nasal spray and how many sprays should be ?? If someone did please help us with a formula or quantity? Thank you and I hope to receive an answer ....

    ReplyDelete
    Replies
    1. Dragos, in the recent trial in South Africa the dose of Suramin used was 10mg/kg or 20mg/kg every 4 weeks, by intravenous infusion.

      When taken by a vein, 100% of the drug enters the bloodstream. When taken by nasal spray, we do not yet know how much enters the bloodstream, it may be only a very small percentage.

      The intranasal dose has not been determined. A lot with depend on the chemicals added to it, to improve its absorption. It also depends how often the spray is used. Suramin stays in your body for several weeks, this is why the intravenous dosing was once a month.

      The intranasal method will not be monthly; if it is daily, it will take a few weeks to show any effect, as the level of Suramin in the body slowly increases to the therapeutic level.

      Delete
    2. Hi Dregos where did yuo find suramin?

      Delete
    3. hello Peter snche ik doctor nemecheck says to use rifaxima that oer the moment for children when inulin has failed is the only safe and effective thing and maybe only FMT can replace it.

      Delete
    4. Diego, yes I know Nemechek likes Rifaximin. His treatment does work well for some, but it makes some much worse. There is no therapy that works for all autism. FMT looks very effective for those with autism plus GI problems.

      The research from Hong Kong suggests that people with autism without GI problems still have disturbed gut bacreria. It is not simple.

      Delete
    5. Hi Peter that is right my son doesn't have gut problem but from test his microbiota is not in bilance very low bifidi and lactobacillus

      Delete
    6. Hi Diego, this is exactly what the recent research has found out in Hong Kong. In typical kids, lactobacillus is supposed to be a major family but in ASD it is replaced by Clostridia. Have you by chance tried to supplement pre/probiotics and see an effect for your kid?

      Delete
    7. Hi DRAGOS, I am also interest in your source for suramin and the pharmacy laboratory.
      From the patent filed by paxmedica, they provided a formula for suramin nasal spray, with detailed in vitro and animal experiments data. You can find them there: https://patents.google.com/patent/WO2020247127A1/en (search for "The following is the suramin intranasal (IN) formulation").
      Could you also send me an email so we can discuss further and offer my help? hamo.by @ gmail.com

      Delete
    8. Hi, Hamo, I read what you sent me, I'm not a chemist, the laboratory in Bucharest that offered to help us, wants a prescription from a doctor with the amount of suramin and excipients that must be put in the inhaler, I can buy suramin from SIGMA-Aldricht, do you think that someone can write us a formula with a quantity for a child of 85-90 kg or for any weight.

      Delete
    9. Hi Dragos, yes, that's what I want to further discuss with you. I have already sent my whatsapp number to Apinke, could you add me in the discussion?

      Delete
  8. Hello Dragos, I would like to hear about this lab, yoi can find me as Tatjana Pes on FB if you would like to get in touch.

    ReplyDelete
    Replies
    1. Hi, Tatjana sorry now I saw your post, I had a job, there is a pharmacy laboratory in Bucharest that is willing to give us suramin nasal spray, suramin can be purchased from SIGMA-Aldrich, the problem is that it is waiting for me, a formula with the amount of suramin that must be put in the inhaler (nasal spray) or a prescription made by a doctor from any country, do you think there is someone who can help us ???

      Delete
    2. Hi Dragos

      I am interested in this too and may be able to help.
      Please can you email me on ladyapinks@gmail.com

      Delete
    3. Hello, I sent you a message to the mentioned address, we are waiting for your answer with a possible nasal suramin formula. Thank you

      Delete
    4. Ciao Drago fammi sapere se riesci ad avere lo spray

      Delete
  9. Hi Peter

    Maybe Cariprazine may be a future autism polypill? :-

    "Cariprazine alleviates core behavioral deficits in the prenatal valproic acid exposure model of autism spectrum disorder"

    https://link.springer.com/article/10.1007/s00213-021-05851-6

    ReplyDelete
    Replies
    1. Ross it is an antipsychotic drug and these tend to have lots of side effects, meaning they are best avoided.

      Delete
  10. Hello Peter, thank you for another great post. I have personally tried Rifaximin for IBS and and in my case it has helped with inflammation but it then caused me constipation. I saw an interview with Dr Hawrelak on the Autism Research Coalition facebook page and he mentioned Saccharomyces Boulardii, that is a prebiotic that modulates bacteria, so I started to take it and felt better, then my son and I got sick and we were prescribed medication for Covid that had really awful sideffects like diarrhea and nausea, so a added Boulardii and since it is a yeast I think that it wasn't affected by antibiotics and we actually felt better and could tolerate the treatment.

    Here is the link to the interview: https://www.facebook.com/290716755167882/videos/310089467129097

    ReplyDelete
  11. My son (ASD, 12 yrs) is participating in this. Results for him were low bacteroides and minor c.diff overgrowth. Very interesting information and customized probiotic based on result.

    https://sungenomics.com/pages/flore-research-edition

    ReplyDelete
    Replies
    1. I am interested in this customized probiotics for my autistic 11-year old daughter. Have you seen any improvement for your son from this therapy? Thanks, Grace

      Delete
    2. Hi Grace,
      Sorry for the delay; I tried to reply earlier but haven’t seen my comment publish yet. Perhaps it didn’t upload. At any rate, yes, we feel that my son has improved cognitively and behaviorally while taking the custom probiotics. He had the best school year of his life last year, and his ABA shadow and teacher decided that he no longer needed the shadow in class. The probiotics are one of many things that we do, and certainly my son remains quirky but yes, I think there is a clear benefit and I found the report on his microbiome to provide great information that is generally consistent with his birth history and with what is currently known about the ASD microbiome.

      Delete
    3. Thank you so much for the information. I will give it a try for my daughter.

      Delete
  12. https://www.nature.com/articles/s41598-017-10382-2
    Fish oil may help by modulating gut microbiome.

    ReplyDelete
  13. Peter which dose of rifaxim are yuo using?

    ReplyDelete
    Replies
    1. Diego, I was prescribed 400mg twice a day for 6 days.

      Delete
  14. Hi Peter, I am starting a trial of piaglitazone with my son. Do you have any idea how long it should be before an effect would be noticeable, if there is one? We are giving 0.75/kg/day.

    ReplyDelete
    Replies
    1. Sara, in the phase 2 trial just under 50% were found to be responders. That trial lasted 16 weeks.

      I think your are likely to know within 2-3 weeks if your child is a responder.

      Delete
    2. Thanks! I want to make sure I give it enough time before deciding that it isn’t working.

      Delete
  15. Is anyone here familiar with the genetic connection of kidney/urinary tract birth defects and autism, or can point me to a resource on that? my daughters first cousin (9 months old) is about 3 months developmentally delayed so far and in all honesty I had him pegged as autistic when he was just 8 weeks old. One of his kidneys is working only 10% capacity due to malformations of the urinary tract. I read today that this is a common comorbity, so if anyone has detailed knowledge, please tell me.

    ReplyDelete
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    1. Tatjana, this paper is recent and on this topic. You may have already seen it.

      https://link.springer.com/article/10.1007/s00467-020-04875-y

      Delete
  16. Yes, that and a few more articles caught my eye. I thouhht maybe a reader has that same case and can shed a bit more light on it from a practical
    perspective.

    ReplyDelete
  17. Good day to all. Peter, thank you for your interesting blog. I wanted to ask your opinion on pine as a natural alternative to suramin. "Eastern White Pine Tree Needles a Natural Source of Suramin". https://www.biologicalmedicineinstitute.com/post/eastern-white-pine-tree-needles-a-natural-source-of-suramin

    ReplyDelete
    Replies
    1. Juliya, suramin is not orally bioavailable. If pine needle tea did contain suramin it would not get absorbed.

      Are there suramin alternatives that have the autism effect? The search is still on.

      Delete
    2. Hello Peter. We also decided to try butyrate. But only now I noticed that the ingredients are not sodium butyrate, but butyric acid (in the form of calcium butyrate and magnesium butyrate). Until you figured out what is the difference?

      Delete
    3. Juliya, the supplements all come with sodium, calcium or magnesium added to the butyrate. All will produce butyric acid in the body.

      It should not make a big difference, but note some people with autism have a negative reaction to all calcium supplements.

      Delete
    4. I also found this information.
      Sodium butyrate has a higher biological activity (it interacts with the cells of the body directly at the point of contact of the active substance), and its solubility does not depend on the acidity of the medium.

      Calcium butyrate has a slightly higher content of butyric acid anions than sodium salt. In this case, the reactivity and biological effect of the calcium salt are less pronounced, and the solubility is in direct proportion to the pH of the medium. http://propionix.ru/poleznye-svojstva-butirata

      Delete
  18. Hi Peter, do you think you could find an alternative to suramin, I don't think white pine tea helps, I looked at blue spirulina or klamath powder, do you think it could have a stopping effect on cellular danger ... .

    ReplyDelete
    Replies
    1. Dragos, at the moment the only real option is suramin itself.

      Delete
  19. Hi Peter, just wanted to let you know that Facebook informed me today that a comment of mine where I gave a link to your blog (and which contained almost nothing else) has been flagged as ‘against community standards’. so, you have managed to offend those pesky fact checkers.

    ReplyDelete
    Replies
    1. Tatjana, Facebook seems to automatically block blogs from blogger(google). There is a lot of spam on blogging sites.

      Delete
  20. Hi Peter,

    Any idea what PTCHD1 genetic condition is?
    https://www.spectrumnews.org/news/brains-sensory-processor-may-prompt-memory-problems-in-autism/
    Any treatment?
    Thanks
    SD

    ReplyDelete
    Replies
    1. SD, this gene is on the X chromosome, so boys have only one copy. A lack of expression of this gene is associated with autism and ID. There are research chemicals that enhance expression of this gene, but no therapies for humans. This gene is quite commonly affected in autism, meaning about 1% of autism.

      A gene therapy could be developed if somebody funded it.

      Delete
  21. Hi Peter,
    Do you recall any readers who have done microbiome and/or organic acid tests, or if yourself have any views on these tests? From Hong Kong I have ordered two stool tests for my 3-yo son (qPCR and 16s). The qPCR test have returned and that only includes a panel of about 20 species, e.g. if plantarum is normal compared to normal controls. The red flags pop up as:
    1. Very high level of C. diff and E. coli compared to controls
    2. Too few helveticus, lactis, rhamnosus and acidophilus

    Interestingly, his Faecalibacterium prausnitzi falls within the normal range, which is different from the CUHK's recent research which discovered a common shortage of this butyrate-producing specie amongst Hong Kong ASD kids. Other main lactobacillus (e.g. reuteri and plantarum) and bifido are also within the normal range. I have been, as I shared before, supplemented my kid with DSM17938, PS128 and Miyairi daily and consistently in the last 2 months. The dosage however is low, e.g. Miyairi I give only 1 tablet per day.

    He has a few times of self-limiting diarrhea before, which is unlike a major C. diff infection, however, GI symptoms are not required to prove a wrecked gut balance. His high level of C. diff per the consultant is abnormally high and he can only see such level 1 in 50.

    I want to find ways to reduce this C. diff:

    In front of me, I see below options:
    1. Try supplement missing strains through iHerb
    2. Order an OAT to see / quantify if C. diff is the only culprit and if other toxins can be found
    3. Wait for the 16s stool test which will provide a full mapping of all microbiota on a pie chart to see if there are more imbalances which will take a few more weeks
    4. Up the dosage of Miyairi, PS128, and add 299v to fight off the C. diff

    Any other options if readers of this blog, or Peter, you may see? Just would like to hear if anyone has down this path already and share the experience.

    ReplyDelete
    Replies
    1. MG, many people in the US do the organic acid test. A problem with the microbiome test is where the sample comes from. It does matter where the bacteria live, so a stool test misses this.

      Probiotics do help some people, but some products are likely too weak. FMT seems to work better.

      A lot remains trial and error, but there is potential to get a positive result.

      Delete
    2. Some experience here treating c diff. Research L. reuteri (I make yogurt from BioGastrus) and also pomegranate husk (commercially available as a powder).

      Delete
  22. Hi Peter what do yuo think about Lepron injection in Autism?

    ReplyDelete
    Replies
    1. Diego, Lupron works by causing a substantial drop in both the male hormone testosterone and the female hormone Estradiol.

      The Lupron autism protocol was based on the idea that high levels of mercury cause autism and that mercury binds to testosterone. The goal was to lower levels of mercury. This theory was debunked and then the idea was changed to just to lower testosterone.

      Lupron is approved to treat children with early/precocious puberty and to treat prostate cancer and some other cancers.
      Some of the children, treated with Lupron for early/precocious puberty, complain of serious health problems in adulthood.

      Shifting the balance from Testosterone towards Estradiol does have a science-based rational in autism, because in the brain estrogen receptor beta is down-regulated. Also,a master-switch called ROR alpha is controlled by the balance between Estradiol and testosterone. More Estradiol in the brain should be therapeutic in at least some autism.

      But, and it is a big but, you really only want to affect male/female hormones in the brain, not in the rest of the body. Otherwise you may cause major health problems.

      There is a wide range of “normal” for both testosterone and Estradiol. So a very masculine boy with elevated testosterone will not be feminized by a little more Estradiol.

      Spironolactone, a cheap diuretic, has the effect of blocking/reducing testosterone. It is given to girls to treat acne spots.

      Estradiol itself is used in hormone replacement therapy in older women.

      Lupron, Spironolactone and Estradiol are all nowadays used by boys trying to become girls, with no understanding of the implications to their future health.

      Do I believe some children benefited from Lupron? Yes, but I do not think this is a clever idea in children prior to puberty. I think oral Estradiol, which is cheap, is likely to be safer, but only advisable if the resulting levels of Estradiol/testosterone remain in the reference range.

      A brain-selective Estradiol called DHED is extremely interesting, but has not been commercialized. DHED has been covered in my blog. DHED is proposed for a range of brain conditions, and not autism specifically.

      Delete
  23. Thanks Peter yuo are Amazing.How does he go for the intestinal protocol rifaxim...have yuo see any good?

    ReplyDelete
    Replies
    1. Diego I have only given Lactobacillus Pantarum 299v; it works quite well. No miracle, but even better mood than usual and clearly more speech. It is not more complex speech, more like whatever is in his mind he says.

      The effect is very similar to what happened several years ago with broccoli powder.

      Delete
  24. Hi Peter,

    My son has severe autism and I would like him to try Bumetanide for a 90 day period.

    My question is since Bumetanide is not a legally prescribed treatment yet how would you suggest I approach a doctor to get a prescription and support with an at home trial?

    Sincerely,
    Jeremy Robinson
    Location: South Africa

    ReplyDelete
    Replies
    1. Jeremy. Bumetanide is currently what is called an off-label treatment for autism. There are published trials and published case reports of its use.

      Some people get their GP to prescribe bumetanide, by showing its use in the literature (just look on google). For others it is a pediatrician, neurologist or even a psychiatrist. Most people though do struggle to find a helpful doctor, and some people spend years looking. The worst country is the UK. The US is no problem, if you are willing to pay.

      In some countries like Spain, Mexico and much of your continent, people just buy it in the pharmacy no questions asked (Egypt, Nigeria etc).

      Delete
  25. Hi, I am the mother of a 12-year-old girl with autism and pans for about 5 months my daughter has become self-harming and has never been before I ask for help please

    ReplyDelete
    Replies
    1. Bianca, there are many possible causes of self injurious behavior (SIB) and so there are a variety of different therapies that can solve the problem. You will have to do some detective work to identify the cause.

      Once it has become established, SIB becomes a learned behaviour. This then becomes a bigger problem because it can be triggered by different things, rather than just the original cause.

      In my son’s case, and it seems in many others, the condition is spring/summertime raging triggered by a seemingly minor pollen allergy. This is fully treatable (Verapamil, Pioglitazone plus allergy treatments Dymista and Cetirizine).

      There are many other possible causes, including:

      GI problems like reflux causing pain and discomfort
      Problems with teeth, including the development of permanent teeth, not just pain caused by tooth decay
      Hormonal changes due to puberty
      Any kind of emotional stress, due to a change in home/school circumstances and routine. (this would include changes due to Covid restrictions)

      Delete
  26. hello Peter my daughter had her first period on January 10, 2020 and until the exatate and mid-September it was all normal then we started the antivirals under the doctor's suggestion and from that moment we didn't understand anything before she started with very strong nervousness and after months to be exact after completing three cycles of azithromycin self-harm broke out! Keep in mind that we have been fighting for 5 months to lower this self-harm. We also currently do ALA with the four essentials plus 750 mg of ACE and 15 mg of lithium orotate and we wanted to try the SAW palmeto! Please help me if you want to do a Skype 🙏🏻

    ReplyDelete
    Replies
    1. Bianca, just send your comments one time. They are not published immediately because many comments are spam and they have to be seen first by me, then they appear on the blog.

      It looks like the self-harm is drug-induced.

      Azithromycin has many effects including immuno-modulation. This can be a positive effect, but in your daughter's case it clearly produced a negative effect.

      I suggest you go back to the doctor that prescribed you the drugs. You need to "reset" the immune system to back where it was.

      For some people this "reset" can be achieved with a 5 day course of Prednisone, an oral steroid. Since your daughter has a diagnosis of PANS, it would be reasonable to ask your doctor for this cheap therapy.

      I am not a doctor and so I do not do consultations.

      Delete
  27. Peter sorry do you think it is more valid as an Ors or Cutler chelation?

    ReplyDelete
  28. Bianca, OSR#1 was sold as an autism supplement. Its chemical name is BDTH2, this is a drug developed to treat mercury poisoning. It was developed by Boyd Haley who also seems to believe that mercury from vaccines causes autism.

    BDTH2 is a potent antioxidant of the thiol type. NAC and ALA are also thiol antioxidants.

    Andy Culter believed that amalgam fillings and other sources have produced heavy metal poisoning, which can be treated via chelation. He used DMSA and other chelators such as ALA.

    I am a big believer in the use of ALA or NAC to treat people with oxidative stress, which is most people with autism and everyone with diabetes, plus other conditions.

    I do not believe in either Haley or Culter.
    |
    I can see the beneficial effect of NAC in my son, who has taken it 3 or 4 times a day for 8+ years. I see the effect of 20 years of ALA infusions in his grandfather with diabetes and heart disease. Neither have anything to do with heavy metal poisoning and chelation, but everything to do with oxidative stress.

    ReplyDelete
  29. Peter please can you tell me if the deltacortene that contains Prednisone is okay? or would you recommend another one? thank you very much 🙏🏻

    ReplyDelete
    Replies
    1. Bianca, yes Deltacortene is the Italian brand name for Prednisone.

      The dose for an asthma exacerbation in a child is 1mg/kg and is best given at breakfast time so as not to interfere with the body’s natural release of hormones. This is taken for 5 days and does not require tapering of the dosage. Longer term use of steroids can have side effects.

      Delete
  30. Peter my daughter is 12 years old and weighs 42 kilos how many mg can she take?

    ReplyDelete

  31. good morning Peter, a big regards
    I can tell you that NAC and Verepamil are very beneficial for my son, in the months he has been taking it, his tantrums have improved, I want to add ALA, what would the dose be, he weighs 75 pounds and is 8 years old

    ReplyDelete
    Replies
    1. Melisa, ALA is very similar to NAC, both are thiol antioxidants. You may not need both, but one might work better than the other.

      I would substitute ALA for NAC and see if things get better or worse. ALA is often sold as 600mg, as is NAC.

      For some people ALA may be better. For my son NAC seems best.

      Perhaps some people benefit from using both.

      Delete
  32. Dear Peter

    Please what could be the cause of constant burping.I mean constant non stop whether he's eating or not.I treated with prednisone for 5 days but still continuing.I am beginning to think its behavioural and we have constant spitting too.It was only outside but now he spits in the toilet and bath but if he has no access to those places ,then he stops.He suffers a lot from constipation too,could this be related to the burping?
    He has made incredible progress cognition wise and understands so many things but no speech still.
    please what do you advise to do regarding spitting and constant burping.

    Thank you

    ReplyDelete
    Replies
    1. Apinke, in the ideal world this question should be answered by your paediatrician. Reflux, GERD/GORD, esophagitis, bloating, SIBO and other types of gut dysbiosis are quite common in children with autism. Sometimes this is drug/supplement induced, and so you have to consider this possibility.

      Your son’s behaviors would seem a natural response to reflux. What can happen is a behavior starts for a good reason and then just becomes a habit. Since people with autism like repetitive behaviors the spitting/burping can just become a stimulating thing to do.

      Since your son has other GI symptoms, these are quite likely all interconnected.

      Many children with autism have a restricted diet and this limits the gut microbiota which then tends towards producing gut dysbiosis. You either work on broadening diet or you could try some probiotics. It is highly unpredictable which probiotic is going to help. Lactobacillus plantarum 299v is supposed to be good for bloating and discourages some of the "bad" bacteria often found elevated in autism.

      The problem might also relate to some food intolerance.
      Hopefully if you ask your GP/paediatrician, you may get help with treatment for reflux and improving GI function, which might mean seeing a dietician.

      Delete
    2. Thank you so much Peter for this. I will contact the paediatrician and see and get the probiotic in the interim as we have very long waiting lists.

      Thank you

      Delete
  33. good morning Peter I noticed that since my daughter takes Same from cell food she is much calmer! we are at a dosage of 7 drops in the morning and 7 after lunch. I wanted to ask you in your opinion can I increase? And how much? thanks a lot

    ReplyDelete
    Replies
    1. Bianca

      In adults with arthritis the dosage of SAMe goes up to 1200 mg per day. You could convert that on per kg basis to get an idea of a reasonable maximum dose.

      Having found that SAMe is beneficial, you might want to dig a bit deeper into why.

      Look at fig1 in this very recent paper:-

      https://www.mdpi.com/2075-4426/11/8/784/pdf

      You can see how SAMe (S-Adenosyl-Methionine) functions in a complex cycle.

      Quite possibly, adding other elements from this cycle will also help.

      Methionine, Vitamin B12, Cysteine (from NAC or whey protein).

      These are all used in autism.

      You could just see which works best in your specific case.

      Delete
  34. https://www.spectrumnews.org/news/community-newsletter-which-came-first-the-diet-or-the-gut-microbiota/

    This study sounds like a pooper but I believe readers of your blog would not find surprising at all. I did not read the full report given the credentials of the lead researcher and find it internally conflicting when it posits that there is no significant signature found in autism microbiome, while asserting at the same time there is a difference but it is only due to the difference of diet.

    ReplyDelete
  35. Hi Peter,

    how was your own experience with Rifaximin ? Have you seen any benefits on Monty ?

    ReplyDelete
    Replies
    1. Rene, the Rifaximin was for me rather than Monty. He has not taken it.

      Rifaximin seems to work well for a small minority of autism, who benefit from repeated courses. Our reader Maja told us that her adult daughter fits in that category.

      I was prescribed Rifaximim and Sodium Benzoate by my gastroenterologist, several months ago. I have had tendonitis in my right arm ever since.

      Delete
  36. Thanks Peter !

    Did Rifaximin help you in some way ? I assume that your gastroenterologist suggested some kind of connection between GI problems and tendonitis.

    And why didn't you try Rifaximin with Monty ? Why do you think he should not benefit from it ? ( just trying to figure out what to do in our case )

    Is there a way how could I contact Maja directly ? Or just hope that she will see my comment and will respond to it ?

    ReplyDelete
  37. Sorry for my poor translation of that tendonitis sentence ( I have never came across on this formulation...🤦‍♂️ ). Nevertheless would like to know answers to my questions. Thanks 👍

    ReplyDelete
    Replies
    1. Rene, when you make a comment in this blog there is a "Notify me" box. If Maja (name used is "majadj") has ticked this box, she will get alerted if you reply to any of her comments.

      I just used google to find one of her comments, there are many others. This one is an old one.

      https://epiphanyasd.blogspot.com/2014/12/activated-microglia-and-inflammation-in.html?showComment=1419091723286#c3522332538378430804

      The gastroenterologiost diagnosed diverticulitis as the cause of abdominal pain, having previously been to my urologist after starting with an internist. I think the problem was actually caused by not drinking enough fluid in the summer, which was actually the diagnosis suggested by my elder son. The first doctor told me it was a kidney stone.

      Rifaximin is well known in autism because Dr Nemechek has his protocol that includes it. He is trying to reduce propionic acid. Rifaximin is widely used for SIBO (small intestine bacterial overgrowth).

      While some people, like Maja's daughter, do benefit from Nemecheck's ideas, some are left in a worse state and others see no change. You just have to try it and see.

      My son has no GI symptoms and a very healthy diet, so I was in no rush to give him Rifaximin.

      Delete
  38. Hi Peter, I am looking to add Probiotics to improve my son’s gut health. I came across 299v - I recall from the days when we were consulting with a Naturopath in US, that D-Lactate free probiotics should be used for people on the spectrum. I am unable to find anything conclusive about 299v being d-lactate free. Do you know if it is? Do you still use this probiotic?

    ReplyDelete
    Replies
    1. The paper below suggests that the idea of avoiding D-lactic acid producing bacteria is based on a misunderstanding of the science.

      Probiotics, D–Lactic acidosis, oxidative stress and strain specificity
      https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5570418/#:~:text=D(%E2%88%92)%2Dlactate%20producing%20bacteria&text=Lactobacillus%20and%20Streptococcus%20genera%20are,of%20these%20(Table%201).

      Your suggested probiotic is Lactobacillus plantarum and it produces DL–lactic acid, which means it produces both types of lactic acid, L and D.

      This probiotic is very widely used for gut health. We have it at home, but do not use it every day.

      I see no reason for you not to give it a try.

      If you want a more potent one, try Biogaia Osfortis which contains L. reuteri 6475. It contains far more units of bacteria than most probiotics, which explains the price. It has 50x more bacteria than the standard L. reuteri 6475 for gut health.

      Most probiotics do not have much effect because they are too few in number and do not colonize the gut. Osfortis is the only one that I tried on myself where I actually felt the result. I would avoid it if you have constipation.

      Delete
    2. I have been giving 299v for a year now, I did see some positive effect on sleep back then and kept going with it since then. along with PS128 and L-reuteri DSM 17938.

      Peter, thanks for sharing Osfortis version of Biogaia, hasnt seen this one. wow, 100times more than Protectis and Gastrus versions. But seems like it uses only ATCC PTA 6745, whereas positive effect (mainly on social and mood) i have seen been with DSM 17938. Do you think ATCC PTA 6745 would be equally potent on the similar markers like social and mood? (strangely, supplement box says for "bone health" :)).

      Delete
    3. I think the bacteria in Osfortis is the one that produced the major positive impact in the people who took large doses of Gastrus. The same bacteria caused negative effects in some people, this effect seems to relate to histamine. It is in the research.

      The bacteria in Protectis is the one that releases oxytocin in the brain. Again though you need a high dose.

      The bacteria in Osfortis has many effects including increasing bone density and speeding up wound healing.

      Delete
  39. Hi Peter, It looks like lp299v signals the immune system and can potentially increase inflammatory cytokines. I am not able to find the original study - but a different one here https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5977373/ that shows an increase in IL10. There are also studies stating decrease in inflammation with Coronary disease in men. With my 12 year old, after a month of no major aggression, after introducing lp299 for regularity (and mood control) - 3 weeks in - we are seeing a return in these behaviors. Overall, I am finding that resilience is a major challenge, the kid is seemingly regulated when everything is perfect (and everyone is on egg shells - ensuring nothing is missed) - any deviation results in aggression. We are on NAC, Miccil, Potassium, Magnesium Glycinate, low dose Folate and some anti-inflammatory supplements (Fish oil, Bacopa) + ABA therapy. Communication challenges also contribute to lack of resiliency. Any suggestions?

    ReplyDelete
    Replies
    1. I suggest you stop the probiotic and try other immunomodulatory therapies to see what works. It is unfortunately a case of trial and error.

      For some people it is GI related, for my son it is pollen allergy for others it has no relation to allergy.

      You might want to try high dose calcium folinate which is very helpful to a significant subgroup for developing more speech.

      Delete

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