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Monday, 2 March 2015

CAPE-rich Propolis for Autism?

CAPE (caffeic acid phenethyl ester) is a substance known to be an inhibitor of PAK1.  PAK1 has been shown at MIT to be implicated in various disorders including Fragile X and schizophrenia.  PAK1 inhibitors are also effective in research models of various cancers, including leukemia.

There are currently no approved PAK1 inhibitor drugs, although several are in development.

PAK1 is also implicated in Neurofibromatosis, and clinicians have researched various alternative PAK1 inhibiting substances.  The two most interesting ones that I have already written posts about are:-

·        Ivermectin, an old anti-parasite drug (also shown effective in leukemia)
·        BIO 30 propolis, rich in CAPE

Ivermectin is already used as an autism treatment by “alternative” doctors who think autism is caused by parasites.  We saw in a recent post that a study looking for parasites in people with autism (in the US) found none.  Ivermectin reportedly does improve autism, according to one reader of this blog and other anecdotal evidence.

I think Ivermectin is likely to be more potent than BIO30, but Ivermectin cannot be safely used continuously, without long breaks.


BIO-30 Trial

Having discussed the idea with one of the Japanese Neurofibromatosis clinicians, it seemed worthwhile to see the effect in our kind of autism.

As you may have seen in previous posts the science behind PAK1 is complex.  It has numerous, mainly bad, effects.  It is involved in dendritic spine morphology; this might be one area where ongoing “damage” is still being done.  So when asked what kind of change I expected/hoped to see, I said “cognitive improvement”.

According to recent research:-

CAPE alone has never been used clinically, due to its poor bioavailability/water-solubility; Bio 30 contains plenty of lipids which solubilize CAPE, and also includes several other anticancer ingredients that seem to act synergistically with CAPE.

Propolis is widely used as a natural remedy, but this was my first experience with it.  The first problem was how to take it; it sticks to everything.

My solution is to cut a small piece of toast and then apply 20 drops of propolis.  Since propolis has a strong flavor, I try to mask it with a layer of Nutella spread on top.

I gave this “honey medicine” at breakfast and in early afternoon.  


Trial Conclusion

There is a cognitive enhancing effect, noticeable not just to me.  The effect is visible almost straight away, but was more noticeable with a dose of 2 x 20 drops than with my original 1 x 20 drops.

At this dosage, it is not revolutionary, but it does indeed provide a real “nootropic”/cognitive enhancing effect.


Propolis for All?

At the dose I am using, I would think this “therapy” is only worthwhile in people whose autism is well-controlled already; meaning no stimming/stereotypy/OCD, allergies/GI problems all resolved, no aggression or anxiety;  these behaviours will mask any benefit.

I actually think this is the first thing I have come across that looks ideally suited for Asperger’s and other HFA.

I did look on line for people trying BIO30 for schizophrenia, all I found was someone else asking the same question:-


Apparently FRAX486 treats schizophrenia in mice due to PAK1 inhibition. Why does no one try Bio 30 Propolis for schizophrenia, as it is a PAK1 inhibitor as well?


Propolis does have numerous other ingredients, including many very interesting flavonoids.

As long as you are not one of the one percent of people with a bee allergy, propolis seems a very safe product.

If you live in Australia or New Zealand you can buy the CAPE-rich propolis locally.  As we learnt in previous posts, only two types of propolis were found to be PAK1 inhibitors, an expensive one from Brazil and the CAPE-rich BIO30 Propolis from New Zealand.

If anyone tries it, please let me know the result.  You only need one bottle and a few days to see if it has an effect.






17 comments:

  1. Peter -- how long did it take until you saw the impact? Also, were you concerned about an allergic reactions (from bees etc). I have the manuko health products capsule but nervous to try!

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    1. I think the impact is there within a day, but you will need longer to convince yourself. Start with a tiny dose to check for allergy. The dose is much larger than people normally use with propolis, so you will need many capsules.

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  2. Hi Peter,

    Where in Australia can we buy the CAPE-rich propolis? What dosage / frequency do you recommend?

    Thanks.

    Regards,
    D&G

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    1. Just google "BIO30 propolis" the producer is Manuka Health.

      The dosage I was suggested was 1-2ml per 10 kg. This is a lot of propolis; here is only 25ml in a bottle.

      I am using 20 drops twice a day, served on a small piece of toast. This is a lower dosage.

      It does not dissolve in water.

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    2. Thanks Peter.

      Based on what was suggested to you, we would dose with either 5 or 10ml. This does appear excessive considering they supply the liquid form in only a 25ml bottle. We will follow your regimen.

      I note they are promoting a 'next generation' BIO100 but only in capsule form. Do you see the increased concentration of CAPE/bioflaviods are being more effective at PAK1 inhibition or just marketing?

      On a previous post you make note that Japanese and to a lesser degree Russian researchers are taking PAK very seriously. Do you foresee drugs such as FRAX486 or others making it to market?

      Regards,
      D&G

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    3. I was surprised to see the websites offering Brazilian green propolis offering Japanese as a language. The Japanese are clearly believers. There are also anti-cancer properties.

      The company to keep an eye on is Afraxis:-

      http://www.afraxis.com/

      In the end a PAK1 inhibiting drug will make it to the market, but it takes decades.

      I would just use the liquid propolis and find out if it has an effect.

      Experiment with the dose. Increase it, reduce it and see what works best. I do not think it will help everyone, so you first just need to establish whether there is an effect. If there is an effect, see how to maximize it.

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  3. Great information on CAPE, thanks for sharing!
    My name is Jodi, and did not know if you are familiar with www.NaturaNectar.com

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    1. Thanks for the link Jodi.

      NaturaNectar sell Green Brazilian Propolis. This contains a substance called Artepillin C (ARC). ARC has various anti-cancer properties and like CAPE, is a PAK inhibitor.

      The Brazilian propolis is more expensive than the BIO30 from New Zealand and that is the only reason that BIO30 is suggested.

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  4. Hi Peter,
    Hope all is well, and apologies for the delayed response.
    I can appreciate the cost difference, however, there is a huge difference in both potency, and NaturaNectar propolis is the only company that has a patented "green extraction".
    All propolis from Brazil, is more biodiverse, most potent, and with No Chemical Solvents. These formulas are approved from Danish board of natural health as standardized medicine since the 80's.
    Anyhow, I would take a look at the "Trio" as CAPE is mostly in the brown, but in there is also 10% Green Propolis, and 5% Red Propolis, to get the benefit of all 3. The cost is much more reasonable at $27.99 for 60.
    I do work for NaturaNectar, and originally reason for contact is I encountered a woman, child is ASD, and she was in years to learn of this.
    Are you in the Indianapolis area?
    Please feel free to contact me if you may have any questions. And, I hope all is well with your family!
    Jodi@NaturaNectar.com

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  5. Hi, our son Mattis 14 and has tuberous sclerosis. We are from NY and buy our propolis from New Zealand. We are using it to help possibly shrink tubers (benign tumors) in the brain, to help Matt's facial angiofibromas, to help with his epilepsy and to help with his autism. We give Matt his propolis by putting 12 drops in an empty medicine capsule 2 times a day. After I fill the capsule with the propolis, I close the capsule with the top piece. Then I bury the capsule in a tablespoon of good tasting yogurt. We will continue using the propolis for at least a year. The propolis is about $30 for a small dropper bottle....we also give him a little manuka honey from new zealand 2x a day . Matt's digestion problem which he had for 5 years has disappeared ...not because of what doctors did or any pharmaceutical drug....but what did it was coconut oil (we use Nature's Way)....Anyway, I hope my suggestion about filling an empty medicine capsule with propolis and then closing the capsule with the other piece helps. It goes down smooth! Good luck :)

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    1. Thanks for the serving suggestion.

      Have you noticed any effects yet?

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    2. Matt's been seizure free since his brain surgery 9 years ago. This past October he started with a new seizure probably due to puberty/hormonal changes. About a month ago our neurologist started Matt on Lamictal and at the same time we started giving Matt propolis....not a good plan to start two things at the same time but we did and his seizures are becoming much less frequent. Like you said above, it is difficult to see improvement in the autism when other things are involved (like seizures). Again, we will be using the propolis for a good while to see if it helps.

      His facial angiofibromas seem a bit improved but I can't honestly say for sure that they are improved...we are still working on it though. I mix a few drops of the propolis in a bit of coconut oil and apply it to Matt's angiofibromas on his face.

      Today we increased the amount of propolis we give Matt internally. As of today, I am giving him a capsule full 3x a day.

      Matt will get his yearly brain MRI in September and we'll see if there is an improvement with the tubers in his brain..... I will keep you posted as we continue on the propolis.

      I have attached some links that you may not have seen that might be of interest: http://www.manukaonline.com/propolis-BIO-30-manuka-honey-benefits.html; http://www.ddtjournal.com/getabstract.php?id=482

      P.S. Thank you for all of your information :)
      Best, Evie

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    3. Thanks Evie.

      My understanding is that the dosage of this propolis needs to be quite high to get the PAK-1 inhibiting effect.

      Since it is not cheap, most people will likely give a lower dosage.

      In our case when I give 20 drops twice a day there does seem to be a cognitive gain, but nothing dramatic.

      One reader gives 10 drops three times a day and is convinced there is a cognitive boost.

      There are so many other factors that can make autism worse, the biggest gain seems to be to reduce those. I suppose in some kids those negative issues may not exist and then the anti-PAK1 effect may be more pronounced.

      The people with NF-1 tumors, as opposed to tubers, are using much larger amounts of propolis.

      Since your son has TSC, inhibiting mTOR would be well worth discussing with your neurologist. This was the subject of my recent post and the subject of two ongoing clinical trials regarding TSC.

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    4. We have discussed Affinitor with our doctors in NY (one at Columbia U) and our doctor in Boston at Mass General who we go to when we need a second opinion. Affinitor can help reduce tubers but if you had to stop taking it for some reason, the tubers grow. Matt has tubers in his brain and in the brain ventricles where the fluid flows so we are leery to start a drug that could make his tubers grow if he stopped taking the drug. Matt's tubers are not growing and have remained the same size for years. Affinitor has adverse side efffects as well. It also is very, very expensive.

      Your post prompted me to actually count how many drops of propolis I give Matt....it's 17 drops 3x a day. It can't hurt him and it may help....just like the coconut oil helped his digestion, when not one doctor, even an NYU doctor, ever suggested it. Thanks for helping and taking the time to answer :) I will start to look at your older posts...been busy lately. Good luck!! Evie

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  6. Thanks for the info, Im going to try BIO30 for schizophrenia and see if helps at all.

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  7. You can buy Daiso 3mg Japanese Propolis at eBay cheaply. Those probably contain almost as much Cape for a fraction of the cost, given that a Chinese brand seem to have as much Cape as the nz one. I'll give it a shot.

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    ReplyDelete

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