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Saturday, 2 July 2016

Biogaia Trial for Inflammatory Autism Subtypes



UPDATE: A significant minority of parents report negative reaction to Bio Gaia, this seems to relate to histamine; but more than 50% report very positive effects without any side effects; so best to try a very small dose initially to see if it is not well tolerated. 
Histamine Reaction to Bio Gaia gastrus


Alli, our reader from Switzerland, has established that a large daily dose (5 tablets a day, cycled 3 weeks on and 3 weeks off) of the Biogaia Gastrus probiotic has a positive effect on the inflammatory sub-type of her son’s autism and also in other people she has shared her therapy with.  There is plenty of science to support its use.

In earlier posts I looked at a different probiotic bacteria (Clostridium butyricum Miyairi 588) that is widely used in animals to improve auto-immune health.  That bacteria is used in humans, but as is the case with BioGaia Gastrus, the focus is on stomach health not auto immunity.  Nobody has proposed an effective dose of Miyairi 588 in human autism; I have only used it in small doses.

It turns out that there is vast wealth of research into the effects of specific probiotic bacteria.  The research is really very interesting for anyone with any kind of allergy.  I expect that, as Alli found, the potential therapeutic benefit goes far wider, to many kinds of inflammatory disease outside the gut, particularly the very hard to treat ones, perhaps even MS (multiple sclerosis).


Biogaia and Lactobacillus Reuteri 

Lactobacillus reuteri is a species of bacteria that belongs to one of the major lactic-acid producing genera of bacteria. It can be found in the human intestinal tract, though not always and often in relatively low numbers. Lactobacillus reuteri is also found in the gut of other mammals and birds.
Initially, Lactobacillus reuteri was used to treat necrotizing colitis, a gastrointestinal disease characterized by infection and inflammation that is particularly dangerous for infants, particularly those born prematurely. Lactobacillus reuteri was used due to its anti-inflammatory effects.
The research on Lactobacillus reuteri and necrotizing colitis used the Lactobacillus reuteri strains ATCC 55730 and its daughter strain DSM 17938, both of which can survive oral supplementation.
Interest in Lactobacillus reuteri grew after research confirmed that changing aspects of the digestive system can influence the immune system. A strain of Lactobacillus reuteri called ATCC PTA 6475 has been found to improve levels of testosterone and oxytocin, as well as skin quality in animal studies. Research on animals has also found potential benefits for hair quality, bone mass and preventing weight gain from obesity-causing diets.
One of the ways Lactobacillus reuteri may work involves a kind of T cell called a Treg cell (a T cell that down-regulates the immune system in part by producing a cytokine called IL-10). Lactobacillus reuteri increases the amount of Treg cells in the body, which suppresses the actions of another kind of T cell called a Th17 cell (which secretes IL-17). Preserving or reversing this process (either by increasing IL-10 or by blocking IL-17) appears to provide therapeutic benefits.
Lactobacillus reuteri increases the number of Treg cells in the intestines, which can then be absorbed back into the blood to benefit the rest of the body.


BioGaia Gastrus is a combination of the well-researched probiotic strain Lactobacillus reuteri17938 (Lactobacillus reuteri Protectis) and the anti-inflammatory strain Lactobacillus reuteri ATCC PTA 6475. It contains 200 million CFU of live bacteria.

The original Biogaia product is called BioGaia Protectis; it only contains Lactobacillus reuteri 17938 (Lactobacillus reuteri Protectis).  It contains 100 million CFU of live bacteria.

Since some readers are already trialing Alli’s therapy, I thought it would be useful to have a single place on this blog where people could leave feedback.  Here is her explanation:-



Dear all,

Lactobacillus Reuteri ATCC 55730 was initially discovered and sourced from women from Peru who carried this strain in their breast milk. 

"The first strain of Lactobacillus reuteri for human use was isolated in 1990 from the breast milk of a Peruvian mother living in the Andes. This strain was deposited at the American Type Culture Collection (ATCC) as Lactobacillus reuteri SD 2112 (SD = safety deposit), and was later given the number ATCC 55730.

In 2007 Lactobacillus reuteri ATCC 55730 was replaced by the “daughter strain” Lactobacillus reuteri DSM 17938. The only difference between the strains is the loss of two plasmids of ATCC 55730 that carried resistance to tetracycline and lincomycin, respectively."http://www.biogaia.com/history-lactobacillus-reuteri

Through my personal review of immunology literature and ASD/immunity related literature and documenting crossroads between immune pathways and Mtor pathways, I came to the conclusion more than one year ago that this was a very interesting strain to try on my son with ASD and a TH1 profile. Biogaia Gastrus was only available in Korea and Italy at the time so I ordered it from an Italian pharmacy online.
It has helped my son significantly in combination with other interventions.

The mechanism at stake is probably the following:

- downregulation of TH1 through upregulation of IL-10 and downregulation of IL-17
This prevents autoimmune phenomena and cytokine flares which affect cognition in certain subtypes of ASD. However, the downside is that long term intake also impairs one's immune system's capacity to fight off infections... 

We use Biogaia on and off for 3 week periods- at a dosage of 5 tablets a day (less is useless in terms of potency).

Use must be stopped if a child shoes any sign of infection.

I have shared this over the past year with several parents around me who have children with similar subtypes and they report similar results.



Effect of Lactobacillus reuteri 17938 on Monty

My son Monty, aged 12 with autism, pollen allergy and occasional asthma, was again my willing test subject.  This is the worst time of the year when his allergy triggers asthma and autism flare-ups.

Where we live, only the older version of Biogaia is sold.  So he has been taking Lactobacillus reuteri 17938, 400 million CFU a day.

In Alli’s dosage there is 500 million CFU of reuteri 17938 and 500 million of reuteri ATCC PTA 6475.

There was an effect almost immediately on his allergy; his nose changed colour.  His pollen allergy gets gradually worse in the summer and the sides of his nose becomes bright red.  Short term use of topical steroids reverses this, but the pollen season is four months long.

Along with his red nose, his behavior gets worse leading to aggression,SIB and cognitive decline.  This lasts from mid June to October.  The aggression and SIB responds very well to treatment with Verapamil, but this does not reverse the cognitive decline.  

My behavioural observations might be wishful thinking, but I cannot be imagining bright red fading to a mild pink.

Clearly even at my reduced dosage and lack of the second anti-inflammatory bacteria (L. reuteri ATCC PTA 6475) something very helpful is happening.

As is my habit, I did a quick review of the literature and found plenty of supporting evidence for the potential benefit of specific bacteria on allergy.

As Alli has found, the potential benefit goes far beyond allergy.
  



RESULTS:

Oral treatment with live Lactobacillus reuteri but not Lactobacillus salivarius significantly attenuated the influx of eosinophils to the airway lumen and parenchyma and reduced the levels of tumor necrosis factor, monocyte chemoattractant protein-1, IL-5, and IL-13 in bronchoalveolar lavage fluid of antigen-challenged animals, but there was no change in eotaxin or IL-10. L. reuteri but not L. salivarius also decreased allergen-induced airway hyperresponsiveness. These responses were dependent on Toll-like receptor 9 and were associated with increased activity of indoleamine 2,3-dioxygenase. Killed organisms did not mimic the ability of the live L. reuteri to attenuate inflammation or airway hyperresponsiveness.

CONCLUSION:

Oral treatment with live L. reuteri can attenuate major characteristics of an asthmatic response in a mouse model of allergic airway inflammation. These results suggest that oral treatment with specific live probiotic strains may have therapeutic potential in the treatment of allergic airway disease.


Probiotic Therapy as a Novel Approach for Allergic Disease



Various effects of different probiotic strains in allergic disorders: an update from laboratory and clinical data



The various effects of different probiotic strains in allergic diseases are shown from laboratory and clinical studies referred to in the text.

↑: Increase in symptoms or negative effect; ↓: decrease in symptoms or positive effect; ↔: no change in symptoms or no effect

References
Probiotic strain
Type of allergic disease
Outcome
Atopic dermatitis (eczema)
Sistek et al.[31]
Lctbs rhamnosus + Bfdbm lactis
Food-sensitized atopic children
Kalliomäki et al.[45]
Lactobacillus GG
Atopic dermatitis
Kopp et al.[46]
Lactobacillus GG
Atopic dermatitis
↔, ↑
Wickens et al.[47]
Lctbs rhamnosus
IgE-associated eczema
Viljanen et al.[41,48]
LGG
Atopic eczema/dermatitis syndrome
Rosenfeldt et al.[49]
Lctbs rhamnosus + Lctbs reuteri
Atopic dermatitis
Kuitunen et al.[50]
Lctbs + Bfdbm + propionibacteria
IgE-associated allergy
Boyle et al.[54]
Various
Eczema
Lee et al.[55]
Various
Atopic dermatitis
Soh et al.[63]
Bfdbm longum + Lctbcs rhamnosus
Eczema and atopic sensitization
Food allergy and anaphylaxis
Kim et al.[27]
Lctbs acidophilus + Bfdbm lactis
OVA-induced allergic symptoms
Isolauri et al.[56]
Bfdbm or Lctbs
Food allergy
Majamaa et al.[57]
LGG
Food-sensitized eczema
Shida et al.[60]
VSL#3 + Lctbs casei strain Shirota
Anaphylaxis with food allergy
Hol et al.[61]
Lctbs casei + Bfdbm Bb-12
Cow's milk allergy
Taylor et al.[62]
LGG or Lctbs acidophilus
Cow's milk allergy
↔, ↑
Allergic rhinitis
Di Felice et al.[59]
VSL#3
Allergic rhinitis
Giovannini et al.[67]
Lctbs casei
Allergic rhinitis
Morita et al.[69]
LGG + Lctbs gasseri
Allergic rhinitis
Xiao et al.[71]
Bfdbm longum
Allergic rhinitis; JCP
Tamura et al.[72]
Lctbs casei strain Shirota
Allergic rhinitis; JCP
Asthma
Kruisselbrink et al.[33]
Lctbs plantarum
Dermatophagoides (Der p1) sensitization
Feleszko et al.[43]
Bfdbm-12
Airway reactivity
Blümer et al.[73]
LGG
Allergic asthma
Repa et al.[74]
Lactococcus lactis + Lctbs plantarum
Birch pollen allergen (Bet v1) sensitization
Karimi et al.[75]
Lctbs reuteri
Allergic airway inflammation
Helin et al.[78]
LGG
Pollen allergy


Reader Trials

It would be helpful if readers would share feedback on their use of high dose Biogaia probiotics.

There are many other types of probiotic, but it would be helpful to first focus on the one that has been shown by Alli to be effective.

It seems to me that within a week you are going to know if you have a responder.  As usual you need to see how the effect varies over time.  Numerous interventions seem to be effective and then fade away and some even go from positive to negative.  I will certainly be continuing to see the longer term effect and hopefully finally adding something new to my PolyPill.









148 comments:

  1. Peter, I ordered Biogaia Gastrus, 30 tablets, i think that 5 tablets a day is too much, perhaps i could start with half de dose?, do you think that is better concentrate a high dose in a few days or 1 tablet a day during 30 days? Valentina

    ReplyDelete
    Replies
    1. Valentina, you know as much as me. I would follow Alli's advice and use 5 tablets for six days. If you use a low dose you may miss the effect as she implies.

      Delete
    2. ok, is that I still don´t have clear the trial, after the 6 days how should I go on?

      Delete
    3. After 6 days, if he is a responder I start 3 weeks on an off, sorry that I hadn´t read it. Valentina

      Delete
  2. Hi Peter,

    I got my son off Rupatadine a week ago and this resulted in immediate mast cell activation/allergy symptoms return, with conjunctivitis among others. Having read all discussions here I started Biogaia Gastrus 5 tablets daily and it resolved in a day. I am biased believing IL-10 has a role in fever effect, but disappearing conjunctivitis cannot be wishful thinking as well. Can probiotic work so quickly for allergy?

    I would be happy to know what happens if you stop B.G. for few days/weeks? Does the effect continue?

    ReplyDelete
  3. Yay someone else giving it a go. Been 2 weeks and i was slightly off (using Reuteri strains), I found out this morning it was the 17938 and giving this to Edward from now on. In the last 2 weeks I have seen changes already. Please keep up this writing on how your son goes.

    ReplyDelete
  4. have just ordered and will be happy to share results here for my son.
    ~Tanya

    ReplyDelete
  5. Thought I'd wade into this.
    I started my son on Pro-15 (hyperbiotics) a few months ago with good results (trialed a lot of different things at that time so not sure of the individual effect). It contains 15 strains including l. reuteri and another that has been studied as a treatment for autism — l.rhamonusus. I'm not sure how much l. reuteri is in it but it, but overall the pill contains a combined 15billion cfu-- they claim that 75% of that survives the trip. So conservatively 10 billion-- safe to say 5 million of that may be l.reuterri. I can't find out anywhere in their literature what type of l. reuteri it is... my son is in England for 2 weeks visiting his relatives under the care of his father who doesn't buy into any sort of biomed and so he has been supplement free for a while. I will start him back up with just the probiotic for a while to see if I can isolate it's effect. He doesn't have any typical outward signs of allergies (sinus related, etc.) but his skin is very sensitive and will turn red at the slightest scratch. He also chews everything which I see as histamine related behavior. I'll track those effects for a few weeks before I reintroduce his NAC, multivitamin, etc...

    Any reason to think that the therapeutic effect is limited to l.reuteri sub-types that Alli mentions? I take it that those are the ones that have been studied and so are recommended for this trial, but are the subtypes of strains fundamentally different?

    I will write to hyperbiotics to find out which type of l.reuteri they use and the amount and report back on my findings soon..

    Cheers,

    Andi

    ReplyDelete
    Replies
    1. Andi, it looks like each bacteria is slightly different and so depending on what effect you are trying to achieve some will be much more effective than others. As you can see in the table in the above post on probiotics for allergy, some worked, some did nothing and some made matters worse.

      Delete
  6. i will be trying this for my son but unlike Alli's son (what i read from the other post) he does not fit a th1 dominant profile. He fits mainly th2 however, he may very well fluctuate between th1 and th2. I just do not know for sure. so I am wondering if it could be effective to try it only in those flare moments that i sense are th1 dominant? does anyone here have a kid like this trialing biogaia gastrus? ~Tanya

    ReplyDelete
  7. Believe it or not,I had never tried probiotics for anything before.While the autism and brain issues were mostly controlled by treating my cerebral folate deficiency,I still have a lot of serious medical problems,I have had for many years.I have had no real immune tests yet,but I have gotten a genetic diagnosis last year,of a unique variant of an extremely rare genetic disease that can both involve the brain,and can cause deficiencies of CD4+ and CD8+ T lymphocytes and Natural Killer cells.Looking at articles like this

    http://www.hindawi.com/journals/ad/2012/189096/
    (See section 3.1)

    I can see these deficiencies could explain all of my lifelong medical issues,and may even explain why I was susceptible to developing FRA related autism.

    I have very severe medical problems.I don't know if I start taking Lactobacillus reuteri what kind of dose I ought to take,or if should only seek out something with only Lactobacillus reuteri,or a probiotic with other strains as well.

    ReplyDelete
    Replies
    1. The Biogaia products are not cheap, but they do use bacteria that has actually been researched. If you have high Th17 ( high inflammatory cytokines like IL-6) and low T regs (so low anti inflammatory cytokines like IL-10) then these products should help, but you would also possibly have other effects ranging from Hashimoto, NAFLD to allergies. I would try it for a few days. If there is no positive effect then save your money and stop.

      Delete
  8. Just got the Biogaia Gastrus last week and I am doing two things concurrently:

    (1) Standard tablets crushed into milk (he won't chew them up on his own).

    (2) I made yogurt using three tablets and a mason jar filled with milk (we make kefir so I have a little experience in this department).

    To make the yogurt I have a sterilized (as best I can) mason jar filled with boiled milk to kill all the other competing strains. Then I let it cool to room temperature (the L Reuteri strains probably don't like standard yogurt temperatures) then put the crushed tablets into the milk, shake it up several times a day, and wait. Took around two days to get something resembling and smelling like yogurt. Note that when people make yogurt (for taste), they use strains that are optimum for taste, texture, and time which is not my concern here.

    The first batch he didn't like as sweetened yogurt (will need to experiment with it) so I had to water it down with milk to get him to drink it down. Once I can make enough for myself I can see if it has any of the mentioned positive effects for me and my wife to get a rough idea if this is actually L Reuteri yogurt or if it is some other bacteria contaminant doing the fermenting (I would need a lab to know for sure). Anecdotal reports I have read about this yogurt method are that it works, but this will come down to a judgement call.

    One thing I do know about probiotics is that you generally need a lot of them for them to make any difference at all. Alli's dose sounds too low to me (500 million CFU)'s when the gut microbiome is estimated to be at least 10 trillion in bacterial number. Of course, you can always have too much of a good thing so we will just have to see how it goes and first ascertain if the yogurt method does anything at all (positively at least).

    ReplyDelete
  9. Tyler, have you, by any chance, found a reasonably priced source? I am seeing it for about $30/30 tabs. At five per day, its exorbitant.

    ReplyDelete
    Replies
    1. Hence the yogurt method which I hopened makes it all a little more affordable because once you get the first batch going you can save a half to a third of it for the next starter culture until the yogurt gets contaminated with other strains. Then you just start from scratch with new tablets.

      Delete
    2. BTW, I forgot to mention that the two strains in Biogaia Gastrus are patented so at least in the United States (and probably most of the western world) this will be your only source unless you want to cultivate the bacteria from human breast milk yourself. It ain't cheap, but neither is autism. So far the yogurt method is working well in terms of some subtle improvements in cognition, but it could be other things or just wishful thinking. Really it is too early too tell. The yogurt product does smell and taste like regular yogurt, minus the consistency of real yogurt (more like a kefir consistency without the clump of grains that you filter out with a strainer if you have ever made homemade kefir before).

      Delete
  10. Peter, Biogaia gastrus is not yet available in Greece, so I"ll start with Biogaia protectis. There is a product, Biogaia Protectis family with zinc in chewable tablets with 100 million L reuteri bacteria. Is this similar to what we need?

    ReplyDelete
    Replies
    1. Petra, I was going to tell you that both your son's NAFLD and bone density issues may be connected to low T reg and high Th17. He should therefore be very likely to benefit from Biogaia since it is thought to raise Treg. So the most obavious benefit may well be in his comorbidities. I would make a trial of 5 Protectis for a few days and see if your son feels better.

      Delete
  11. Petra that is the type I am using. I crush it into Edward's milk. Protectis is Reuteri 17938 (so the one they used in that study). Edward is now into day 17 on Reuteri ( I originally started him on the 18 strain). I have noticed massive changes. More interaction, less Pica, more speech....

    ReplyDelete
    Replies
    1. Suzanne, I am really very happy to hear that your cute little son responds to reuteri 17938.
      The product I finally managed to get as quickly as possible, from my local pharmacy, is Biogaia Protectis junior (no zinc),srawberry flavour, 30 tablets for 18 euros.
      My son is an adult so I don't need to crush pills but this may work for my little nephew who has regressive asperger's.
      First day he only took 3 pills but he looked fine.
      I hope it works long term.

      Delete
  12. Peter, if we are dealing with a PANDAS like scenario: regression, inflammation, autoimmunity but also vulnerability to infection (easy to catch, they last longer and recurrences are frequent). Would Reuteri or any of the other probiotics help or would they hinder even more?
    For my kid, ibuprofen is awesome, but anti-histamines (Benadryl and Claritin) seem to only make him vulnerable to another 4 to 5 weeks of some viral infection, and so fast that I rather doubt they're new ones.
    He is already on bifidum now and then (and sometimes also boulardii), but for GI regulation.
    I don't know how relevant this is but his first step into health decline and regression was a monster gastroenteritis (about 10 months after we landed in our new country, 2 months after starting on kindergarten). After what he fits perfectly into the R-AMD from Dr. Kelley article.

    Regards,

    Jane.

    ReplyDelete
    Replies
    1. I would make a short trial while he is in good health. The positive effect comes quickly and so you will know in a few days. So I think your down side risk of making a trial is negligible. If he does not respond then stop, there is no point keeping going for weeks.

      Delete
    2. Right. I'll follow Alli's guideline for a few days and see how it goes, at any sign of infection I'll stop. I'll be using Biogaia Protectis because its the only one available here.

      Thank you for answering, and for putting this all together. Its been invaluable for us.

      Cheers,

      Jane.

      Delete
    3. Trial closed. It was not working for us. He was very distracted and started having meltdowns for really small things. Also seemed tired all the time and toilet training issues long gone started coming back.
      I gave it to my daughter (supposedly NT but more anxious as she gets older) and she is doing well, but not enough to be remarkable.
      So I'll let my daughter have it and then we are done.

      Regards,

      Jane.

      Delete
  13. Peter, i have the same doubt, because my son is like Janes´s son, problems of immunity, t cells, parasites, also vulnerability to infection, it´s a very dificult question, if probiotics may make things worse, in this case, l reuteri, the strain that has biogaia gastrus i think the case is diferent. But I only will do 6 days, because this treatment is very expensive. In case i go on with 17938, do you think that is useless or could make things worse? Valentina

    ReplyDelete
    Replies
    1. I am very happy with 17938, but I will later try the other one to see if the effect is better. You just need to make a trial to see if the effect is something you want to have. You can then see how may pills you need to get the effect you want, this may vary from person to person. Some more and some less. Maybe the cheaper probiotics work, maybe they do nothing.

      Delete
  14. I found this on amazon and I might trial it for my son: BioAmicus Reuteri Infant & Toddler Probiotic Drops- 10mL, 50 DOSES (Dose = 200 million CFU) Appears to be cheaper than the Gaia product. I'm not sure of the importance of the strain number, so if that is particularly important, please let me know your thoughts.
    https://www.amazon.com/gp/product/B01EKDG77W/ref=s9_cartx_gw_g75_i1_r?ie=UTF8&fpl=fresh&pf_rd_m=ATVPDKIKX0DER&pf_rd_s=desktop-1&pf_rd_r=08Q4GH6W5RP9NXJDAMP3&pf_rd_t=36701&pf_rd_p=6aad23bd-3035-4a40-b691-0eefb1a18396&pf_rd_i=desktop

    ReplyDelete
    Replies
    1. The only way to know for sure would be to try both and compare the effect. They are different bacteria so the effect will be different, but how different you cannot really say. It might be clever to check if he responds to the expensive one and if he does then see if you can keep this effect by using the cheaper one. If you start with the cheaper one, you will never know if you are missing something better.

      Delete
    2. This manufacturer has the interesting option of customized formulations. I have no idea what would be the minimum requirements to place an order.
      But considering the price of Biogaia and the effective dosing suggested so far, going wholesale may really be a good idea, even without customization.

      "Additional Supplements
      We can produce probiotic products in requested combinations along with requested supplements and ingredients such as
      ●Vitamin D3
      ●B Vitamins
      ●Essential Fatty Acids such as Omega 3 (DHA, EPA)."

      https://bioamicus.com/custom-manufacturing/

      Jane.

      Delete
    3. I've contacted Bioamicus. Their strain is L.Reuteri NCIMB 30351. I couldn't find any info on this specific strain.

      On the other hand, all L.Reuteri seem to be useful:
      - Lactobacillus reuteri NCIMB 30242 - lowers cholesterol and C Reactive Protein (is also well liked in forums of ulcerative colitis, despite the research focus being on heart health and cholesterol).
      http://www.ncbi.nlm.nih.gov/pubmed/22990854

      - Other strains show promise of therapeutic value for cancer (in the following study, in vitro, 5 strains were compared). Note that one thing they are screening for in this study is the production of butyric acid.
      http://www.omicsonline.org/open-access/screening-and-invitro-analysis-of-lactobacillus-reuteri-strains-for-short-chain-fatty-acids-production-stability-and-therapeutic-potentials-in-colorectal-cancer-jbb.1000212.pdf

      Jane.

      Delete
  15. That is very interesting about customization if this strain is helpful -- thanks for posting. I think I will try this one first and see if it helps, if not I will do a trial of the more expensive one.

    ReplyDelete
    Replies
    1. Please share your impressions after you try.
      I would love to know if Bioamicus is a viable alternative.

      Regards,

      Jane.

      Delete
  16. Peter, is it ok if you swallow Biogaia with water? It's boring for my son to keep 5 tablets in his mouth during the day.
    How do you supplement, for example could we give them all five in one go?
    Since we are discussing about inflammatory autism subtypes here, my son subjectively perceives his disorder as a "latent viral infection". He explains that it doesn't feel like a bacterial infection because bacteria can reproduce on their own, yet viruses can't survive without a host, himself.

    ReplyDelete
    Replies
    1. I tried one, i just crunched it and swallowed it. It's like a candy. It tastes fine.

      I thought all in one go might not be optimal, so I split it into two.

      Compared to the other tablets he swallows, this is an easy one.

      Delete
  17. I got in touch with Biogaia Greece to ask why Gastrus is not available here. They asked the reason of my urgency and told them about its possible effect on autistic syndromes. They contacted Sweden and verified it. The Swedish company policy is that Protectis mostly acts upon the mobility of the intestine, while Gastrus is to treat inflammation/allergy and relevant behavioural issues. Therefore, since Gastrus seems more beneficial in my case I am entitled to have it a year earlier than it is supposed to come to market in Greece. I don't know how much it costs, but it will be free of shipping charge.

    ReplyDelete
  18. Peter, Could I have a simple explanation why less than 5 tablets daily would be useless in terms of potency?
    Is this conclusion coming through parents experience, or there is literature to support it?

    ReplyDelete
    Replies
    1. Petra, this is the therapy developed by one parent who has been using it for a year. She is just sharing her experience with it.

      The idea was to see how it helps other people. But starting from a point that at least works for some people.

      In some people it may not help at all, in others a smaller dose may work and in others even more may be needed. For some people a different strain might be better.

      Many probiotic products contain billions rather than hundreds of million of bacteria.

      The only autism literature on probiotics is on mice.

      Delete
    2. The human gut contains around 10 trillion bacteria (some research suggests a lot more, some suggest a lot less as nobody as actually counted 10 trillion bacteria one by one obviously). On top of that, the acidity of the stomach is going to kill a very large portion of any ingested bacteria. GNC's standard probiotic pill of Lactobacillus and Bifidobacteria contain 25 billion CFU's (they have 50 and 100 billion CFU capsules as well but really it comes down to cost per CFU with standard probiotics sometimes). This is just my opinion, and I am skeptical why the company that sells this product does so with such a small dose. Anecdotal reports from people using Biogaia Gastrus for its more conventional uses suggest it is a rather potent strain that you can actively notice, but a lot of that sounds like placebo talk. The conventional wisdom at the moment among most in the medical establishment is that probiotics are a total waste of money. I don't agree with that, though I do think many of the commercial probiotics sold are a total waste of money.

      That is why I am trying to yogurt method first to see how it goes before spending a couple thousand dollars a year or more to get a useful level of dosage which I will do if I feel it is worth it. Plenty of other people are trialing this probiotic the conventional way (including Alli who has been ahead of the curve for quite some time), so I will obviously be keeping my ear to the ground and be mindful of their advice with regards to cycling and Biogaia's purported effect on the immune system.

      Delete
    3. Here is an interesting convo by a bunch of biohackers on just this topic:

      http://www.longecity.org/forum/topic/70456-lactobacillus-reuteri-atcc-pta-6475-most-potent-thing-ever/page-2

      The paper that they reference; "Evaluation of Lactobacillus reuteri DSM17938 as starter in cheese production", suggests that adding additional stains helps the l.reuteri yield.

      I'd love to find a cheese with these stains, much more tasty than homemade watery yogurt and if it's aged enough there might be some nice vitamin K2 as well :)


      Delete
  19. Thanks for clarifying it.
    I also need to express my respect and appreciation to Alli for this invaluable information.
    I am just trying to adjust the dose and needed to know this first.

    ReplyDelete
  20. Hi Peter & Friends,
    Can you please tell where any of you have bought it in the US, I saw it on amazon and couple of other sites, but checked to see if i could buy from manufacturer ( I buy NAC from pharmanac). I guess you should check the strain is the same.
    Please let me know
    Thanks
    BK

    ReplyDelete
    Replies
    1. The US is normally far cheaper for supplements than Europe. The UK distributor for Biogaia sells in bulk (10 packs or more) with 50% discount, so about $16 each. Maybe ask the same from the US Distributor (called Everidis).

      https://everidis.com/shop-products/

      Discount is for "medical professionals", whatever that means. No UK doctor is going to buy probiotics, he would tell his patient to buy them, but most likely would think them a waste of money.

      Delete
  21. Thanks Peter

    ReplyDelete
  22. Our child regressed into autism in december 15. By May we tried Swedish "magdroppar" from Semper/Biogaia. All of a sudden he stopped pacing. We will be trying Vivomixx for sure. At the moment we're on Probiozym. He still has a lot of the features from the regression like loss of language though. Any tips?

    ReplyDelete
  23. Our child regressed into autism in Dec 15. After giving him Swedish "magdroppar" containing L Reuteri in May he stopped pacing all of a sudden. He still has not recovered in language and sociability altough all of the "stimming" has stopped. Any further tips/ideas? Do you think recovery could continue, stimming be the first part to ameliorate?

    ReplyDelete
    Replies
    1. There are very many different types of autism, some regressive autism seems to be caused by mitochondrial disease. Look on the top of the blog for the tab saying regressive autism. Antioxidants help many people. There are numerous metabolic causes that are treatable, look at the treatable I D tab.

      If the probiotic helps, keep taking it.

      For classic autism, my therapy is in the PolyPill tab.

      Delete
  24. Looks like I might be shelving this trial - after just one dose noticed anxious hyperactivity and then itchy nose. Gave allegra and was settled within 15 min. Gave second in evening and was fidgety and couldn't settle for bed time. Dosed one this morning same exact time as yesterday, same anxious hyperactivity again gave allegra and then calmed. So i think this probiotic generates a histamine reaction for my kid. Not sure how that can be gotten around so shelving for now. ~Tanya

    ReplyDelete
  25. Hi Peter,
    We are on day 2 of BioGaia Gastrus. Day 1 he became overly emotional and appeared out of his skin. I am guessing this may be due to stirring up the gut. I have decided to take a different rout than Alli as my son is very sensitive to change. I am going to go slow and give 1-2 tablets for a week to help his system adjust. Once I see that he is able to tolerate I will increase and finally reach her recommended dose of 5/day. I will let you know how it goes.
    Thanks! Christine

    ReplyDelete
    Replies
    1. You may not need 5 a day. With just 2 pills of the weaker version my son wants to hug his family members all the time. The mouse study said it raises oxytocin, which would increase emotions, it so obviously does this in my son. It also does wonders for his pollen allergy. Your version has one extra bacteria, so is more potent, so two pills may be plenty for your son. Too much may introduce other effects, you need to experiment a little.

      Delete
    2. Thank you for your reply Peter. You are correct, every person with ASD is different. I plan on giving the 2 pills of BioGaia Gastrus to see if that is all he needs. Interestingly his allergy symptoms have been non-existent the past couple of days. We live in Chicago (US) and ragweed pollen is always an issue this time of year. I really appreciate this blog. We have tried SO many things over the past 11 years and recently went off all medication except Clonidine to get a baseline (it has been 8 years since my son has been medication free). I figured why take it if it isn't making his quality of life greater. We weaned slowly (Prozac and Memantine). No worse, no better.
      --Christine

      Delete
  26. We are getting the extra hugging and affection too ! Only have been on it a week, started at 400 cfu and have increased to 800 per day. Using the bioamicus colic drops

    ReplyDelete
  27. My sister just had a baby so I have easy access to breastmilk as I was weird enough to ask her to pump bottles for me. I also bought a 3 week supply of biogaia. Can you overdose on probiotics? How much breastmilk would I give him to equal 5 pills?

    ReplyDelete
    Replies
    1. Not all mothers will have this bacteria so I doubt there is a direct equivalent. You probably can have too much probiotic bacteria. You may find you need less than five pills, just vary the dose and see what is the effect. A smaller dose is effective in our case, but it will all depend on that person's immune system, gut and diet. The effect is visible in a day or two.

      Delete
  28. Hi Peter,
    Out of curiosity, did you try to reduce other treatments targeting pollen allergy when you noticed Biogia effect? Do you use Biogaia continously or with breaks suggested by Alli?

    ReplyDelete
    Replies
    1. Yes, he is fine with less antihistamines. I did not try stopping completely. I am using a much lower dose than Alli, so I have not made a break. I still give Verapamil, but a little less.

      Delete
    2. Thank you for information. If Biogaia effect is stable over the time then hopefully it may allow to reduce the number of drugs used daily. I would find this very helpful.

      Delete
  29. Hi Peter, After our visit in Turkey and being on Biogaia protectis trial, my son had high fever, a mild amygdalitis and high values in SGOT (90), SGPT (149) and CRP (55).
    He was prescribed Augmentin (amoxicillin). Then he was taken to a special clinic for infections with the fear of kidney damage. His kidney function seems good and no detectable infection was found. So we are talking about an atypical infection responding well to Augmentin. His fever dropped and also values dropped in half.
    During fever there was a considerable reduction in his autistic behaviours. When fever dropped and being on Augmentin, he was exposed by accident to his major trigger. This almost always brings extreme OCD like behaviours and complete lack of control. At first he had a bad reaction, but to our astonishment, he managed to inhibit it and reset himself. Then he exposed himself deliberately to his trigger twice with no bad consequences.
    I only give Augmentin and one tablet Biogaia Protectis. I am on a dilemma with the use of the probiotic because Alli says when fever we should stop but I kept it.
    Fist thing comes in mind is PANDAS or other autoimmune diseases and second how long I could possibly keep him on amoxicillin.

    ReplyDelete
    Replies
    1. I think the point is not to use super high doses when you are sick. Where we live the doctors and pharmacists tell you to always take a probiotic with your antibiotics, to avoid side effects of the antibiotic. If your probiotic is very strong and dampens your immune response this would not be helpful while you are sick.


      Delete
  30. My Asperger's little nephew seems to respond well to Biogaia Gastrus. He looks more sociable, doesn't throw tandrums as much as he did and makes more reasonable decisions for himself.
    Unfortunately in his MRI was found to have 1cm gliotic foci/ischemic type damage in frontal lobe. Frontal lobe is responsible for consciousness, judgement, language, movement, obsessions, mood and personality disorders, lack of planning and motivation and cognition.

    ReplyDelete
  31. Hey Peter I was wondering what are your thoughts on Umbilical cord stem cells?
    As you may know Michael Chez just finished a pilot study for UC stem cells last year. Although he hasn’t published any data he has mentioned that of the group of kids that were given their own stem cells 60 percent were responders(http://www.todayonline.com/daily-focus/health/could-umbilical-cord-blood-provide-hope-children-autism)
    Duke University also just finished phase 1 for their UC stem trial and Dr. Kurtzberg mentioned that the results were positive ( https://www.ipscell.com/2015/12/upbeat-update-on-duke-stem-cell-autism-trial-but-whats-mechanism/). My son is on the a list for phase 2 of Duke trial and we will know if he gets on within a few weeks.
    I also wanted to mention this clinic in Panama that treats children with donated cord blood (https://www.cellmedicine.com/). I know it sounds really, really shady and I was a doubter in the beginning. But after digging through a bunch of Facebook pages and Youtube videos of parents whose children improved after using UC stem cells I found that they all went to this clinic in Panama. There is even a Facebook page of over 1000 parents who are using stem cells for their children. Not all children in the group are responders but a great many of them are.
    A different note and i’m not sure if you’re keeping a record but i’ve tried 1 mg of Bumenatide for 3 months without any results and am currently implementing a Ketogenic diet for my 3 year old toddler with moderate ASD. So far there hasn’t been too much of an improvement other than weight gain and normal stools.

    ReplyDelete
    Replies
    1. Jeff, anything is possible, it is very experimental because there is no suggested mechanism of action. I prefer interventions based on some rationale. Once they start publishing results it will be possible to make some conclusions. In all these trials the big problem is that different kids have very different underlying dysfunctions and you need to carefully match the therapy to the dysfunction.

      If the therapy has been proven safe and you are not paying for it, there is no reason not to participate in a clinical trial.

      Delete
    2. With regards to interventions for autism, a clever person, not necessarily from a scientific background, can provide a rationale laden with scientific jargon for every possible therapy under the sun, backed by anecdotal evidence. Correlation is not cause and effect. But when faced with a devastating diagnosis like autism or cancer, caregivers are willing to try out all options and as a mother to an autistic child, resources permitting, I would do the same. However, as to widespread claims about autism being caused by toxins or nutritional deficiencies, is there any data indicating high autism prevalence in highly malnourished populations or the most heavily polluted ones. What are the specific environmental factors which are triggering higher autism incidences on certain populations. In India we are seeing a sudden surge in these new age developmental disorders. And the prevalence is high in populations touched by modern medical interventions during pre and post natal care, childbirth and vaccination schedule, irrespective of economic class. But again, correlation is not cause and effect.

      Delete
    3. Autism incidence is linked to numerous aspects of modern life, so it is not a surprise that it is increasing in India, no doubt alongside asthma, allergies, type 2 diabetes etc. The poorer and more rural the society the less environmental triggers exist for autism.

      Delete
    4. Peter, have you read the book 'An Epidemic of Absence' by Moises Velasquez-Manoff? http://www.moisesvm.com/

      It's a very well researched presentation of the 'old friends' hypothesis, i.e. that the immune system is adapted to function in the presence of the broad array of bacteria, parasites and even some viruses that are part of life in the developing world (and everywhere, until relatively recently). When those things no longer interact with the immune system, it generally skews toward inflammation. Thus these 'Western' diseases like allergy, autoimmunity, autism and even certain cancers appear to be a cost of modernizing.

      There's an entire chapter on the increasing incidence of autism and how human hookworms (not just TSO) might be of therapeutic benefit in some cases, I'd love to hear your take on it.

      - Christopher

      Delete
    5. There seems to be a strong case for a disturbed macro and micro fauna in the external and internal environment leading to a host of maladies. A recent study found a positive link between female fertility and roundworm infestation in the body. On a reflective note is the genetic fabric of what makes us human, language, complex social interactions and the moralities disintegrating through epigenetic processes triggered by backslashing nature.

      Delete
    6. Christopher, I have not read the book, but it looks like his ideas fit well with mine. In effect a little dirt is good for you and a clean sterile house is bad for you. Have a pet cat, dog or rabbit and don't feel you have to wash your hands after playing with it.

      His ideas are impossible to prove and so I doubt people will change.

      When it comes to autism it is likely that mother's first years, even including her time in her mother when the eggs of the autistic child were formed, are all important. So at least three generations are involved, not even considering epigenetic effects from further back.

      The good news is that adding back specific bacteria does indeed seem to dampen the immune response and help some people with autism.

      Delete
    7. Peter, do you think that parasites were transmitted to my son from his grandmother? what is your opinion about it, do you think that parasites are a result of an altered and inherited immunesystem or could be healthy in some way?Valentina

      Delete
    8. Valentina, the suggestion is that some parasites may have been beneficial in the Grandmother to keep her immune system in balance. When she was pregnant with her daughter the balanced immune system does no harm to the daughter or the eggs that she develops before she is born.

      This hypothesis does not mean that all parasites are good for you, just the ones that over evolution the body has come to expect.

      Delete
  32. I know quite a few parents whose kids have received stem cell treatments, some who have undergone even two or more cycles. And except for the doctor doing the procedure or the wishfully thinking patent, changes are not not perceived by anybody else. And in one case there was substantial damage..whether brought about by the treatment or spontaneous degeneration it's hard to say. That is the problem with autism treatments..it's hard to say anything..for or against and therefore there is no accountability on part of the advocate. But personally I am willing to try treatments which give significant measurable and stable gains as I have observed my child responds positively to every change even if it is behaviour in a school after a vacation. Except for autistic kids with severe mental retardation, majority of the children are bound to show phases of spontaneous improvements.

    ReplyDelete
  33. Hi Peter,
    I was just wondering why a roadmap for assessment of comorbidities and identification of biomarkers which are indicative of a probable positive response to target drugs, has not been established yet. Is anybody compiling the large complex data which is already there to establish links.
    We in India have a highly competent medical community but few mainstream doctors are willing to wrack their brains to sift through the mountain of data sometimes confounded by bad science. Apart from the carnosine, bumetanide (where placebo control was meaningless) and the suramin study, few others have given any conclusive results due to obvious underlying heterogeneity of the autistic population. Also, apart from the efficacy, safety concerns
    are there on the doctors mind. As my son's pediatrician said..do you want to convert your child into a guinea pig! Look for his strengths.
    This lacuna in medical treatment of autism has been filled up by medical professionals who even after failing to get desired results on their subjects continue to propagate a said therapy..stem cell, methyl b-12 and hyperbaric oxygen herapy to name a few. These therapies work but as you said, on subpopulations.

    My son has displayed numerous phases of non autistic behaviour over his 4.5 year old life. Gesturing to me to put on a jewellry and then kissing me, chasing us with small tables on which he climbs to give us a hug, offering a toy to a terrified toddler at the docs clinic, shutting my husband out of the room after we had an arguement and greeting guests by smilingly holding their hands, inviting them inside and gesturing them to sit. These behaviours are dismissed by his therapist and met with an indulgent shrug by his doctor.
    That he is capable of such behaviours even if not always should mean that instead of a permanent damage like say blindness or mutism, his autism is at least in part is conditional and given the right pharmacological support should show dramatic improvement. But where is the pharmacological support?
    As a mother i am disturbed as to what i am doing wrong in not being able to exploit my childs potential so that i do not have to have just glimpses into waht my child can be and at the same time hopeful.
    Peter, dont you think such instances of normal behaviour followed by phases of disconnect show certain affinities with psychological and mental health issues instead of purely neurological ones. Of course, in biological terms even psychological imbalances are driven by biochemical and neurological imbalances.

    ReplyDelete
    Replies
    1. One medical reader of this blog is interested in developing a very personalized medical approach, based strictly on science. The difficulty is that you cannot guarantee success for all, for some it will be an expensive exercise that yields nothing, but for others it could be life changing.

      I think that variations in the severity of someone's autism can be more useful than genetic testing. You just have to figure out what triggers improvements or regressions.

      Psychology is as important as biology. If you have a psychological trauma, like my son did, there are behavioral consequences but also biological consequences. It is all highly complex and far beyond the scope or interest of your family doctor.

      Doctors follow what they are taught at medical school, which is like a giant repair manual for the human body. There is not a section on autism. The section on psychiatry is totally outdated.

      Generally the focus is on the 95% with no significant defects from birth, the remainder used to be forgotten about.

      Much could be done but it would require a complete shift in attitudes.

      Delete
  34. Peter, we hypothesize here that Biogaia upregulates oxytocin levels and I have some evidence to support this statement, myself. We also know that once oxytocin upregulated, orexin is activated. Moreover orexin interacts with other metabolic cues, including ghrelin, leptin and glucose concentration.
    When it comes to autism I sense that all these functions get too complicated for me to understand.
    For example, does orexin increase or decrease hunger?
    I've noticed my son has got into some kind of fasting (he needs less food), does this say something about the way the probiotic acts on him?
    We also had, the atypical infection and the antibiotic therapy together with the probiotic and this makes it harder to draw safe conclusions.

    ReplyDelete
  35. Well we are now on day 35 and I am still a believer. I have however gone a bit further in to research on the whys. I found it interesting that L. Reuters also helps the body to create vitamin d3.
    So I looked up vitamin d3, which also apparently produces the oxytocin, serotonin and GABA. (Just if anyone is interested).
    I have another friend who started using L.reuteri and they have started noticing their little man has said more words and others have commented on his better behaviour.

    ReplyDelete
    Replies
    1. Thanks for the update, I am sure this is helpful to other parents. I am also seeing a stable positive effect and intend to continue.

      Delete
    2. Hi Peter,
      Just wanted to chime in quickly: We are seeing results from L. reuteri!! We are using drops from another company, bioamica. Gastrus tablets were too strong tasting and could not get him to take. However, with the drops my son has been much more engaged, actually coming over to me throughout yesterday and today, asking to join him in playing, to give us a hug, point out animals on TV, etc. What an enormous change! We are also using another prebiotic called Cytoflora in addition to Klaire Labs Therbiotic, 1/2 capsule daily. Have been dosing 10 drops L. Reuteri yesterday and today, might try more but we are definitely seeing results already. Klaire probiotic was his daily probiotic previously for a few months before we discontinued, he never had this kind of response. Possibly also could be helping allergies, but have him on some quercertin powder which has definitely brought down overall inflammatory/histamine response...cognitively he's much more "with it" as well!
      Hope this continues. Many thanks!

      MKate

      Delete
    3. MKate, you might want to try the BioGaia Protectis drops. They are easy to take and a friend of ours finds their son with non verbal autism responds well. They even used the last few drops to make yoghurt, which they used for several days in place of the drops. We use the Protectis tablets.

      Delete
    4. Do you use the protectis tablets or the gastrus ones (with the additional anti-inflammatory strain?). We've just kicked off 2 tablets a day Gastrus (dissolves well) while removing the anti-histamines to see if it balances out.

      Delete
  36. Hi Peter,
    I started the trial with 2 tables of Bio gaia, he seemed to have a lot of gas and was crying towards sleep time, it got better once I gave mylicon. Did not know if it was a coincidence, or any other parents saw this.
    Thanks
    BK

    ReplyDelete
    Replies
    1. It does seem to cause some gas, maybe start with one tablet.

      Delete
    2. You could also use the older Biogaia product with just one type of bacteria. Biogaia Protectis works for us and a boy with non-verbal autism we know, and at a low dose.

      Delete
    3. We would be grateful for an input,first night gave crushed biogaia dissolved in a very little water and gave whilst sleeping this is a normal thing whilst giving probiotics.Woke up fully and didn't return to sleep for a couple of hours second night upped to two and same thing happened stayed awake in a bad mood for longer time.Can these gastrus only be given during the day.why would there be this issue of non sleep.hard to say if there is an change in her attitude during the day.any suggestions please

      Delete
    4. I give the Biogaia at breakfast time. It will take some hours to show effect at the start since the bacteria has to multiply in the gut. Then the subsequent tablets are just helping to maintain a stable level of this bacteria.

      Not all people with autism are going to have an over activated immune system. In people with a typical immune system the Biogaia should give no behavioral benefit.

      Delete
  37. Peter, today i gave my son 1 tablet of biogaia gastrus, but by mistake he swalowed it instead of chewing, should be the same effect?Valentina

    ReplyDelete
  38. There are also bacteria that eat oxalates.
    http://www.oxthera.com/oxabact-granted-ema-orphan-drug-designation-for-treatment-of-sbs/
    They hold a patent but they have nothing to offer and sofar only
    slow down the cure...

    Oxalates can be a problem in autism

    http://www.greatplainslaboratory.com/articles-1/2015/11/13/oxalates-control-is-a-major-new-factor-in-autism-therapy

    In India they seem to have these oxalate eating bacteries available.
    Does anybody know a reliable source?

    ReplyDelete
  39. Hi Peter, after 6 days, stopped the trial, my son started to show OCD and pandas like tics and movements, also having meltdowns for small things and very tired, like jane´s son. I am also giving it to my NT daughter. Do you think that alfa lipoic acid could help in his situation? Valentina

    ReplyDelete
    Replies
    1. After a few days the probiotic bacteria will leave his system, so just give it some time.

      Delete
    2. ok, as you say, notice it will take another few days to back off this symptoms, wanted to know if alpha lipoic acid could be a substitute of nac, for my son, in reducing repetitive movements that could be related to yeast. Valentina

      Delete
    3. Valentina, ALA and NAC are both "thiol antioxidants" and so work in very similar ways. So ALA should be a good substitute for NAC.

      Delete
    4. Valentina,
      it was about 10 days for my son to go back to normal after we stopped biogaia.

      Regarding NAC, I don't know about replacing it, but I've noticed that with NAC + carnosine he doesn't need it as often and the effect wears off less abruptly. We give both in the morning, and NAC only by late afternoon (without need to be too rigid about timing). Carnosine doesn't replace NAC, at least not for us.

      Regards,

      Jane.

      Delete
    5. Thankyou Jane, my son wasn´t a nac responder and imagine that he won´t be an a.lipoic acid responder either, as both are thiol supplements and can worsen yest issues. He is on l carnitine. Has your son yeast issues and is a nac responder? Regards, Valentina

      Delete
    6. Hi Valentina. He doesn't have yeast issues and responds very well to NAC.

      He does have GI issues, controlled with natural GFCF diet + probiotics eventually (whenever there are talks of bugs at school or we know we will have less control over his diet due to travel or parties for exemple), and is taking the mito cocktail for about 2 years now.

      The probiotics we use are Boulardii and Bifido Bacterium (kids tablets with Bifidobacterium Breve (M-16V) + Bifidobacterium Infantis (M-63) ).

      Jane.

      Delete
    7. Jane, after reading your first sentence,all is clearer to me about how can I help my son, as you may know it is not easy to treat yeast. Thanks
      Valentina

      Delete
    8. Boulardii is supposed to help eliminate yeast and other bugs (in which case it must be taken daily for some weeks).
      I don't know if its use ended up protecting my kid, but its a possibility...

      It may be he just needs other kind of antioxidant. Vitamin E is beneficial for some but does nothing for us. Vitamin K on the other hand is changing his life...

      We try and learn :)

      Jane.

      Delete
    9. Jane, which vitamin K are you giving? How much? And what effects do you see? Did they come straight away or after some time.

      Delete
    10. Peter,Jane,me and my son have de mut c677t and clotting problems, vitamin k should be avoided? I wanted to take it with vit d and also give them to my son. Iam also factor V Leiden.Valentina

      Delete
    11. Thorne Research K2 1mg/drop.
      I give 5 drops in the morning, since may. He is 5yo and has 18kg. I've started with 5mg 2x /day but reduced because I'm having a hard time getting it.

      Effect doesn't show right away, but after one week we already knew it was not just a streak of good days.

      Trying to keep cold and analytical, here is what improved:
      - Attention span;
      - Shared attention: follows when we point something further away (before he would follow like 1 or 2 meters, now I can point something the other side of the street and he understands). For him to point something he still needs prompt.
      - Speech: better pronunciation, more spontaneous use of words, echolalia of complete sentences instead of words;
      - Motor skill/agility: not impressive, but easy to perceive/prove;
      - Receptive language: understands more complex instructions and questions.

      It all translates into better communication (which is his most severe issue), better relations especially with peers (big sister is loving this) and a lot of learning.

      As usual, it’s very hard to pinpoint and scale improvements. It’s like it cascades and brings him overall to another level.

      After the first month I've stopped to see if the effect wears off. Acquired learning stayed there, but he seemed to slowly start to fade back and stagnate again.

      I'm sorry that I can't give you some more concrete data.
      But know that my perceptions are shared by all his educators/therapists, and they don't know about his supplements.

      Jane.

      Delete
    12. Jane, thanks or the explanation. I am glad it works for your son; there are good reasons why it might help some with autism. It looks like it is a smallish minority, but luckily for you your son is a responder.

      It is easy to trial and the Japanese studies show that even huge does are safe.

      Delete
    13. Valentina, you are correct that vitamin K plays a role in blood clotting and it is contraindicated in people using drugs like warfarin. You will have to check with a specialist. You may fall into the very small category of people for whom K2 is unwise, or possible not.

      C677t is linked to elevated homocysteine, which is linked to increased likelihood of blood clots.

      There are several vitamin K-dependent blood clotting ('coagulation') factors, which is why we all need vitamin K.

      You can lower levels of homocysteine.

      Delete
    14. Peter, thanks, don't use warfarin yet, only when had diabetes gestational,I am taking folate, m.b12 and tmg. Being in this small category limits the options of being benefited from good things like vitamin k, green tea, nac and go on.Valentina

      Delete
    15. Hi Jane,
      Which brand of probiotics are you using? At what dosage?
      I have a son a little older than yours and he responds the same way as yours with BioGaia (day 3 of the trial, I will push a little further).
      Thanks!

      Delete
    16. David R., obviously not Jane here, but just wanted to respond that our son too reacted badly to this BioGaia l. reuteri product. He reacted very histamine-y. also wanted to mention that like Jane's kid, he responds well to bifido strains like the one in the Align product. I have read many people wit mast cell issue have problems with l. reuteri strains but do well with bifidos. this is my son. ~Tanya

      Delete
    17. Hi David. We use Saccharomyces boulardii if needed to control or prevent diarrhea, and a bifido mix for babies with Bifidobacterium Breve (M-16V) + Bifidobacterium Infantis (M-63) 2 or 3 times a week.
      I use these probiotics to keep his GI symptoms under control, because only diet is not enough. As far as I know, they help regulate GI function and control pathogenic strains, but do not interfere with immune system.

      Regards,

      Jane.

      Delete
    18. Hi and thanks Tanya & Jane.
      I'll check the Align one.
      Jane, my question was about the brand you're using, not the strains... it can be hard to find a good one, especially here in Spain.
      Thanks!
      David

      Delete
    19. Boulardii is from AOR and Bifido from Sisu.

      I have no idea if these specific brands are available in Europe, but you should not have problem with local suppliers, at least for boulardii, as it was used in Europe way before it arrived here.

      Delete
    20. David, Seeking Health ProBiota Bifido is another product that has only bifido strains. You could check Amazon Spain to see if they carry it. I have tried it only occasionally for my son in the past but will be trying again now that so many things have improved since starting verapamil. Many people in the Mast Cell/Histamine facebook groups have good luck with that product. ~Tanya

      Delete
    21. Thanks to both of you.
      The verapamil didn't work for him, although he suffers a lot from allergies. Quercetin neither. Bumetanide also didn't work, but we'll try again when allergy season is over.
      Thanks again

      Delete
    22. Tanya, can you give some details of how verapamil has helped your son. Thanks

      Delete
    23. Tanya, I was intrigued by your "histamine-y" observation. The bacteria that is in Gastrus but not Protectis is there to produce histamine in the gut which then acts via H2 receptors to trigger an anti-inflammatory effect. I will put this into its own post. It seems that under certain conditions histamine is anti-inflammatory. Perhaps this does not work for your son. I would try Protectis which has a different mechanism and works well for us.

      Delete
  40. Hi Peter, According to Dr. Naviaux research, purine synthesis, which is a master regulator of behaviour, can be increased as much as 4-fold in some autistic population. Since my adult asperger's son has high levels of uric acid in blood and also responds to biogaia, I was wondering how this probiotic might affect his purine metabolism.
    Would it be a good idea if I combine it with a diuretic and some beer with alcohol?

    ReplyDelete
    Replies
    1. Hi Petra, it would be interesting to know in what way your son responds well to Biogaia and at what dose. How does he describe the effect?

      There was a lot of interest about uric acid levels and autism some years ago, but they did not end up concluding anything useful. It is fair to say that something strange is going on regarding purine metabolism and uric acid, but it is not clear exactly what.

      It is worth trialing the bumetanide, but that relates to GABA dysfunction.

      Delete
    2. Hi Petra Petra,

      Could you please explain what effects you are expecting when considering dosing your son on diuretics. It seems your son is not cognitively challenged and giving a diuretic to a person with high uric acid is counterintuitive. Are you trying to achieve high urine output recommended through intake of lots of fluids? I am curious as water balance in body and its relation hormonal and metabolic disorders does seem to manifest in some autistic subtypes.


      Delete
    3. Peter, I give 3 Biogaia Gastrus a day.

      The people from Biogaia Greece sent me a big complimentary packet and keep contacting me about my results.

      Physically we have better intestine motility and digestion of foods he couldn't tolerate before, such as refined carbs and sugars. I saw his energy level increase.

      Behaviourally he shows a more positive attitude towards life. I saw him making new friends and even flirting with girls.
      The thing that has been torturing my son most is his rigid thinking. I saw a considerable improvement in this field because I noticed that he tries to find alternative solutions in order to function.
      Biogaia doesn't possibly solve all problems but it sets a better environment to work with himself.

      Peter, we've talked many times about uric acid and you've been absolutely clear that there is no conclusion in research. Please excuse me if I am repeating myself and bear in mind that I don't expect you to give answers you can't have. So this is just for the information: LDL cholesterol dropped and uric acid by 0,5 in blood tests. I am just saying that perhaps this is evidence of its antiinflammatory effect on my son.

      Delete
    4. Thanks Petra; so it looks like other people with Asperger's might want to give this a trial.

      In the comments we can see that small number of people have a negative reaction, which fades away after stopping the trial, but the great majority of those who have given feedback show the positive response first identified by our reader Alli from Switzerland.

      Delete
    5. Hi Anomymous, Regardless of uric acid the diuretic Bumetanide could treat severe autism or Asperger's in three quarters of the children that took part in the French research, so it's itself a challenge to trial.
      My son may not be cognitively challenged but anxiety seems to be hindering him from doing constructive things he wants to do and thrieving in life. So I expect alleviation of anxiety by targeting the mechanism behind it.
      Diuretics are contraindicated when uric acid is elevated but I am not trying to fix uric acid itself, I am not as scared of gout as I dread autism. I think there is something wrong with his purine metabolism and since uric acid friendly diets don't help, I thought I should do a moderate opposite. Beer, ethanol and diuretics consumption according to Peter's post on hyperuricosuric subtype.

      Delete
    6. Hi Petra,

      Hope you are past new year celebrations and the hangover. Petra, today I gave my son his first dose of biogaia gastrus..just half a tablet and two hours later observed some reflux which I had seen even with bioamicus reuteri. Probably in 24 hours I will get a better picture. You, I believe were giving your son 3 tablets with good results. Are you still continuing it, and if not why? I cant do the high doses with my son as past experience has shown a single dose (100 cfu) of reuteri or an additional one is all he tolerates with good results and above this there is no benefit, rather emotional dysregulation.

      Petra, I think 'I am being followed by a moonshadaw'. Just everything that can go wrong is going doubly wrong. I had ordered lot of stuff from i herb (including bioray products and carnosine) and they give huge discounts. And it was expensive stuff! But first the customs levied a very heavy duty, almost 70% of the purchasing cost and secondly, I dumped the unopened package and by mistake disposed it off with the garbage. I think i am loosing it. So, I swallowed a capsule of fisetin which I had ordered for my son and had never used it. It better work for me!

      And when I shared this with my husb and, pretending to feel very upset, he said "its ok, place another order, at least the drugs will expire surrounded by loved ones".

      Do share your gastrus experience as want to try it before schools reopen and wishing you and your family well as always.

      Delete
  41. Hi Peter,
    I trialed Biogaia Gastrus again for my son, after the first day, started with 2 tablets, now at 3 to 4 tablets.
    I see some good results, he has been smiling a lot more, and is running less, and looking more in to our eyes/
    Thanks
    BK

    ReplyDelete
  42. Hello Peter,

    For the past two days, after a wonderful month, my son started displaying mild irritability, intermittent whining and pinched my husband and his therapist. And although I somehow was not ever convinced about this talk about yeast, bugs, parasites bringing about behavioural issues, sure enough my son developed a yeast infection under his foreskin. And yes, he made loony screeching sounds like others have mentioned. Trying to control with S.boulardi, apple cider vinegar and plain yogurt and a topical ointment. But this episode was an eye opener for me. Do you think behavioural deterioration brought about by such infections is purely purely caused by discomfort or their is a truth about yeast/bugs (whatever that means) having a more profound effect on behavioural aspects.

    Could there be some logic behind MMS or homeopathic drugs targeting 'parasites'.




    Another question, which is not related to drug therapy, is that in my son I feel his intense focus somehow creates so much hyperexcitability or anxiety that it becomes a deterrent to learning. For instance I am teaching him cursive writing which is am uphill task but he seems to cooperate more if he is not entirely focussed on writing. I mean another accompanying distraction paradoxically makes it easier for him to perform. Obviously such a setting can be arranged at home but will become counterproductive of he becomes dependent on this. What is going on? In fact I feel even ABA in its most preliminary stages where there are tangible rewards like toys or food items, may be helping in diluting focus to reduce hyperexcitability.
    Is this possible?

    What is the way out and can drugs hypothesized to reduced neuronal hyperexcitability resolve such problems too?




    ReplyDelete
    Replies
    1. Many "alternative" practitioners focus heavily on parasites and yeast. There is little in the research to support this.

      One reader used a steroid inhaler that prompted candida to grow in the child's mouth and behavior to change. This yeast growth is a known side effect of that inhaler. When the candida in the throat was treated, the parent said the behaviors went away. That is just one anecdote.

      I suspect that some people are indeed sensitive to candida, but I imagine most are not. You would think this would be easy to settle in a scientifically valid study, buy nobody has done it.

      Most parents would complain about lack of focus impairing the ability to learn. I would not over analyze all his behavior.

      Delete
    2. Hello Peter,
      Yes, in a roundabout way most sensory issues will result in lack of focus..what I was trying to say that for my son focussing is distressing because of hypersensitivity leading to excitation issues. My son is not hypersensitive to loud noises but will cover his ears for a second or two when he hears songs which trigger nostalgia..cover his eyes when he meets his grandparents or even us sometimes..
      .he gets emotionally overwhelmed. Of course he is learning to regulate this but such an intensity of sensations. That is why kids regress when a favourite therapist leaves or there is discord at home.
      All kids do, some autistic kids crash never to recover.

      Its a pity that medical science is so disinterested or rather disorganized about these psychoneurological disorders..it seems to make for fascinating research. It's pathetic that I have to ask about Candida and behaviour in a parents forum howsoever brilliant minds might be constituting it.

      And ironically the three doctors with autistic kid's that I know, working in top hospitals, two of them being paediatricians, have severely autistic kids with a debilitating intellectual disability and on these kids nothing seems to work. Mediocrity and insincerity rules the roost and sometimes I feel like giving a peice of my mind to the patronizing but indifferent teachers at the pricey mainstream school my son goes to, to his young aide whom I pity because of her lack of excellence or even interest in any area of knowledge, to the smug teachers at his remedial center who think a blank face equals merit and his paed who sends you to a paediatric dermatologist if your child contracts head lice from the domestic help.

      Sorry for this but I think doing ones job well, whatever it is, would make a world of difference to this messy problematic world.



















      Delete
  43. Suramine is an antiparasitic drug which is used in autism research. I know it is a versatile drug but I thought parasites and protozoa are relevant to autism and that it is being trialed for this reason, I am wrong, aren't I?
    Speaking of yeast in the throat, my son once had his throat cleaned out of candida by the doctor, but I just can't remember any behavioural changes.

    ReplyDelete
  44. Hi Peter,
    In looking at your polypil, I see you recommend Potassium and Magnesium for calming. 250mg of K 2x/day and 75mg of Mg 2x/day. It seems most Potassium is sold in 99mg's and the combination formulas aren't 250/75 from what I have seen. Can you tell me if you are giving a combo pill and if so, which brand? Also are you giving that much Potassium in order to safe guard against electrolyte depletion from the Bumetanide? If my son isn't yet taking Bumetanide, should he still get that much Potassium?
    Thank so much for your insight!
    --Christine

    ReplyDelete
    Replies
    1. Christine, potassium supplements are very weak in the US due to FDA policy. I use a French effervescent tablet that is 500mg with the added Magnesium, I give half in the morning and half in the evening. The adult RDA for potassium is 3,500mg and a banana contains 800mg.

      I give the potassium because it does have a behavioural effect itself and to maintain a healthy level due to bumetanide. I have some posts about hypokalemic sensory overload, where a low potassium causes sensory issues that are immediately reversed by oral potassium.

      The potassium from a pill gives a quick spike in levels, a banana does not. Other people found the same effect.

      My son has his potassium supplement and also eats bananas and other food rich in potassium, like orange juice.

      Delete
    2. Peter,
      Thanks so much for your reply. Since I am in the US, do you know if the French supplement is available here? If so, what is the brand name? If I can't acquire it, do you think it is even worth trying a US brand since the formulations are so weak. --Christine

      Delete
    3. Christine, the stronger OTC supplements are banned in the US by the FDA. Very large doses of potassium can kill you. The simple alternative would be to take 2 of the 100mg supplements twice a day.

      Delete
    4. Peter sorry for so many questions, but if you will oblige me -- one more :-)
      I was able to find a 200mg formula of Potassium by a company called Pure Encapsulations. In order to add in the magnesium I have to be careful as anytime I have tried magnesium supplements my son gets very loose stools which lead to diarrhea accidents. I read up on magnesium supplements that don't cause this problem and one was highly recommended called Angstrom Magnesium which appears to be absorbed best because it is broken down finer. It is an ionic magnesium which is 99.9% absorbable. Are you familiar with this? Do you think because it is more easily absorbed I need less. Again, sorry for all of the questions, but I want to get it right. THANKS SO MUCH!! Christine

      Delete
    5. Christine, I would start with an inexpensive potassium supplement (without magnesium) I think that will work just fine.

      Delete
  45. Hi Petra Petra,
    Of course you are wrong and suramin is being trialed not for its antimicrobial properties but for its action as an antipurigenic mediator. When cells stop talking to each other kids stop talking
    ..or something to that effect. But surprisingly lots of antimicrobial or even anti helminthics are showing promise in autism treatment..but so are
    A number of other drugs targeting entirely different pathologies.

    ReplyDelete
    Replies
    1. We know that it is the non parasitic effects that are the reason why these drugs are interesting. Ivermectin is a PAK1 inhibitor that also kills parasites. It is a strange coincidence that so many anti parasite drugs have additional quite different effects. So it not surprising that many alternative therapists think that parasites are a key driver in autism - they are not.

      The same is true with some treatments used for candida, the beneficial effect is quite likely nothing to do yeast. Nystatin affects some relevant potassium channels in addition to killing yeast.

      Delete
    2. If a treatment works, not by targeting 'parasites' but some other mechanism, which probably a CAM practitioner is ignorant about, and is without serious side effects, the therapy is successful and life changing for a family. At least it's a starting point..getting the principle on which it functions wrong is the an altogether different argument which does not take away the efficacy of the therapy. Throughout history of scientific discoveries, critical observations often precede fine tuning explanations underlying mechanism of action.

      Delete
    3. Hi Peter, do you think that candida is not crucial in regressive autism? treating mitochondrial dysfunction would be a better approach? Valentina

      Delete
    4. Hi,

      The above comment on CAM therapies derails from the relevant issue..explainations I was seeking about parental observations and mention of Candida and I take it back.

      Delete
    5. The anti parasite drugs used for whatever reason in autism do generally have side effects making long term use problematic. So it becomes important to know their mode of action so safer drugs that can be used long term can be found. There are comments in this blog from parents seeking just such drugs that can replicate the benefit of ivermectin, for example. People might also be taking other measures to destroy the non existing parasites and do real harm.

      Delete
  46. Hello Peter and Petra,

    Hey, let's not be so smug about proposed relationships between that non scientific terminology and descriptions about bugs/parasites and autistic traits when we are making such discussions under a theme proposing ameliorative impacts of good 'bugs' on autistic traits. Our genetic material and our bodies are composed and inhabited by protozoans viruses and helminths and current research is focussing on understanding and applying this knowledge to treat human pathalogies including autism. If l. reuteri
    Can make a child less autistic so using reverse logic Candida or other microbes could make a child more autistic. I am not trying to make a point about Candida here..I am totally ignorant and just started exploring the potential help my son can get from treatments other than behavioural therapy and education. But let's keep an open mind..when it comes to autism anything is possible!


    ReplyDelete
  47. Hi,

    Enrichment of knowledge and wisdom takes place when attempts are made to understsnd and respect different points of view, traditions and methods of inquiry. Modern science is one method of inquiry..that is it. If a treatment modality uses words like receptors, antagonists, upregulation and chanellopathies, it does not automatically translate into it being more effective. Alternative medicine, again a loaded term, does not, likewise mean quakery. Traditional medical systems worked on different parameters of assessments and their shortcoming lies in an inability to explain the mechanism underlying a given therapy. Probably the mechanism is not considered important or at the time these systems developed the investigative tools available to modern medicine had not developed. And then this fascination with modern led to these systems of medecine being pushed to the margins and rather an embarrassing proposition to those considering it. Common sense dictates that if something works, even if it's psychosomatic, it's worth looking into and probably trying to understsnd how and why it works 'scientifically'. There are things known and there are things unknown and in between are the doors of perception!

    ReplyDelete
  48. Hi Peter,

    After an infinite wait for biogaia protectis chewable tablets which had cost me around 95 euros, today Amazon India refunded my money as they had received the package in a damaged condition..and the product is no more available with them.

    Money saved.. now i have a choice of placing a new order either for bioamicus reuteri which is using a different strain of l.reuteri or for biogaia protectis infant drops available through amazon
    .com. Bioamicus is more economical as the live bacterial count per unit is double than that in biogaia and will be made available faster. But for trialling purposes, the small bottle of biogaia will cost me much less..in fact only around INR 1500. However, there seem to be complaints regarding maintenance of appropriate temperature while shippong. So confused..wanted to get the trial process with this bacteria over and done with fast so could start trying out other things. As it is, I have a hunch it will not make much of a difference to my son's condition.

    Please suggest if possible..I am already feeling quite embarrassed by putting up one stupid query after another.

    Regards
















    ReplyDelete
    Replies
    1. I would buy the Biogaia Protectis drops. We use the tablet form. This is the bacteria used in the research.

      Delete
    2. Peter-

      What a wonderful blog! I'm trying to absorb it all.

      I do have a question: I've seen you refer to both the Protectis and Gastrus products from BioGaia. Can you clarify which you use and what the differences between them are?

      Thanks!

      Delete
    3. Andrew, Protectis has just one type of bacteria and Gastrus has an additional one added. In our case Protectis has a clear positive effect, however Gastrus does not. So in our case the first bacteria is very helpful but the second bacteria is not. So it is worth trialing Protectis first and then Gastrus. Some people have a very positive response to both bacteria. Some people have a negative response to both. In our specific case the choice is clear, two tablets of Protectis daily.

      Delete
    4. Hi Kritika,

      I'm sure you already know about of all the products available on Amazon, but I just thought I'd mention that I just purchased a capsule form of L. Reuteri to try out with my son, who responded beautifully to BioAmicus drops. I'm trialling it to see if it works as well as the drops and will let you know our results. Perhaps capsules in a plastic bottle would be easier to get shipped/delivered to you in India?
      The name of the product I bought is Microbiome Plus Gastrointestinal, which is L. Reuteri at 3.5 billion CFU per capsule. It comes with a separate prebiotic but we are not using that as I already have my son on a few other prebiotics. These are not the same strains as Biogaia or Bioamicus. Truthfully I have no idea if the strains matter or not, as I have only tried the bioamicus strain as of right now and it works. Microbiome bottle says it contains L. Reuteri NCIMB 30242. BioAmicus contains the strain NCIMB 30351. My hope is the Microbiome will produce the same results we've had so far.
      Regarding the possibility of degradation during exposure to heat, I think that all of these products are freeze dried live virus. The Bioamicus shipped to me during 90F+ temps with no cooling device and the directions said to refrigerate after opening. There could be a difference in quality control during manufacturing, etc but I doubt it. All of these L. reuteri products are produced in Canada.
      I really hope you can get something delivered to you soon. I think L. reuteri could only help your son.
      Good luck! :)
      MKate

      Delete
    5. MKate, it looks like you are not the only parent who found BioAmicus helpful. From their website:-

      https://bioamicus.com/autism-research/

      Since the report was published we have had a significant number of customers purchase our BioAmicus Reuteri products to see if similar results could be attained for their autistic children.
      We have been receiving encouraging feedback from parents stating the following changes in their autistic children’s behaviour upon use of BioAmicus Reuteri, such as:
      acknowledgement of others in the room
      improved eye contact
      commencing social conversations with others along with understandable speech
      joint attention improvement
      ability to carry out multiple step instructions

      A Clinical Trial to formally study the concentration and dosage of our Lactobacillus Reuteri strain and their effects at improving conditions associated with Autism is currently being planned by BioAmicus. If you would like to know more information or would like to participate, please CONTACT us through this website.

      Delete
    6. Hi Mkate,

      I have had disappointing experience, not less than thrice, wheere I am left waiting for biogaia protectis, both through Amazon.in which have suddenly cut down on probiotics as well as Amazon.com, who either do not ship most products to India and even if they do, somehow fail to deliver it.

      I was really keen on trying L.reuteri and your message has rekindled my interest. Bioamicus reuteri is available through Amazon India so i have a higher probability of receiving it fast. Let me check the one you have mentioned. There were others, hyper biotics for instance, with high bacterial counts and good reviews but they have mixed bacterial populations.


      Will surely try out L.reuteri and let you know my experience. Also, please share your bumetanide trial.

      Delete
  49. Hi Peter, many thanks for your post. May I know why we need to use it 3 weeks on with 3 weeks off? We are using 2nd weeks and haven't see something yet but will keep using.Many thanks

    ReplyDelete
    Replies
    1. In many people who respond well the effect later is lost and so this is the reason for using it in cycles. Some people use a much smaller dose and find the effect is maintained without the need for cycles.

      It may be that the bigger the dose the more the body reacts via feedback loops to counter the positive effect.

      Some people respond better to a very similar probiotic from Bioamicus, also a L.reuteri bacteria.

      I have just started again with Biogaia Protectis, because the immuno-modulatory effect helps with allergy, but we also get the oxytocin effect every time I give it. If I give it every day by the end of summer the allergy benefit has fallen to zero.

      Delete
  50. Peter, every time I look at the table with probiotics in this post I have to think what the arrows in the "outcome" column really means. I am probably not the only one. Please, could you make a clarification in the text?
    /Ling

    ReplyDelete
    Replies
    1. ↑: Increase in symptoms or negative effect; ↓: decrease in symptoms or positive effect; ↔: no change in symptoms or no effect

      Delete
    2. Thanks a lot! This will save me a lot of headache.
      /Ling

      Delete

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