Anyone else using Vayarin? It's been amazing

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FatherOf2
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Re: Anyone else using Vayarin? It's been amazing

Postby FatherOf2 » Sun May 05, 2013 2:55 pm

amndzon wrote:...the only thing that has really helped medicine-wise has been low dose naltrexone.

Did LDN make your daughter calmer or more focused or all the above? Please ellaborate on the effcet from LDN. Also, when do you apply LDN: morning or evening? And what part of the body? Thanks.

amndzon
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Re: Anyone else using Vayarin? It's been amazing

Postby amndzon » Sun May 05, 2013 3:55 pm

I'm not sure what the ldn helped with most. It's sort of intangible at times, like her sleep is better, less awakening with bad dreams. She has a sleep disorder and this helped with that. She has very loud lucid dreams every night. This calmed it from four times a night to a much more managable one or two a week. She was also very unaware of personal space and would come up to friends and would wave toys or her arms right in their faces. This has stopped. Her speech is better, less loud, more focused and less stream of consciousness.

I put the dose on her back, stomach or legs, usually around 9 pm. We had one reaction to the dosage about 1 and 1/2 months ago, where she got a rash on her leg. The pharmacy and our DAN consulted and determined it was likely toxins coming to the surface. I had put the dosage behind her knees for the first time that night as I couldn't get to her back or legs or stomach due to her pajamas that night.

I know Vayarin has helped a lot of people, it just didn't help my girl. Our DAN has said she is one of his toughest cases. What works for most has made things worse for her. We've tried Quercetin, DMAE, Taurine, Clonidine, Pycnogenol, Glutamine, Melatonin, GABA, and probably some others I'm forgetting. Either it made things worse or did nothing. I'd like to do the yasko or 23 and me testing but we live in Maryland and it's prohibited by law.
Last edited by amndzon on Mon May 06, 2013 8:26 pm, edited 1 time in total.

borsooq
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Re: Anyone else using Vayarin? It's been amazing

Postby borsooq » Mon May 06, 2013 7:31 am

amndzon, this rash looks like after Valtrex. Maybe she has some virus infection(s)? LDN improves immunology reaction so maybe ahe was fighting with some viruses?

ellenjofishel
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Re: Anyone else using Vayarin? It's been amazing

Postby ellenjofishel » Sat Jun 08, 2013 4:11 pm

My doctor just gave us a script for Vayarin, but it is only 1 per day. Does anyone see success at this dosage? I will start my son at this but just wanted to know if I should expect to increase to see results.
Thanks
Ellen (new member)

mel
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Re: Anyone else using Vayarin? It's been amazing

Postby mel » Sat Jun 08, 2013 9:16 pm

My son can only tolerate 1/2 a capsule per day. If I give him a whole capsule he gets very very stressed out but 1/2 a capsule does wonders for him!

Kastania
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Re: Anyone else using Vayarin? It's been amazing

Postby Kastania » Tue Jul 09, 2013 3:08 am

We recently tried the original form of Vayarin, called ZOOM, which we bought from Israel (where it was developed). As far as I can see, it is exactly the same as Vayarin, just sold under a different name and no prescription required.

My daughter has had a mixed reaction to this supplement and I was hoping someone could shed some light on this. On the one hand, I have seen a definite improvement in speech, with increased ffluidity and more words. On the other hand,, though, she has had what looks like an increase in glutamate/excitotoxicity. She is laughing inappropriately a lot during the day, which she usually never does, she is repeating sounds over and over and is being uncompliant.

On the Vayarin site, it states that one of the side-effects is an increase in SGOT. I know this is a liver enzyme, but is it also an indication of increased excitotoxicty? I like the increased speech but not the rest of the behavious that come with the Vayarin,

Does anyone have any thoughts?

FatherOf2
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Re: Anyone else using Vayarin? It's been amazing

Postby FatherOf2 » Tue Jul 09, 2013 9:18 am

Kastania wrote:We recently tried the original form of Vayarin, called ZOOM, which we bought from Israel (where it was developed). As far as I can see, it is exactly the same as Vayarin, just sold under a different name and no prescription required.

My daughter has had a mixed reaction to this supplement and I was hoping someone could shed some light on this. On the one hand, I have seen a definite improvement in speech, with increased ffluidity and more words. On the other hand,, though, she has had what looks like an increase in glutamate/excitotoxicity. She is laughing inappropriately a lot during the day, which she usually never does, she is repeating sounds over and over and is being uncompliant.

On the Vayarin site, it states that one of the side-effects is an increase in SGOT. I know this is a liver enzyme, but is it also an indication of increased excitotoxicty? I like the increased speech but not the rest of the behavious that come with the Vayarin,

Does anyone have any thoughts?

My son has a similar reaction to many biomeds (laughing inappropriately, repeating words, hyperactivity and stimming). My DAN told me that a lot of biomeds increase brain activity in different areas and you see good and bad behaviors increasing at the same time. We would stop such biomeds after seeing bad behaviors rising. However, your DAN may advise you to stick with Vayarin with an assumption that bad behaviors will subside over time. Sometimes they do, but so do the good behaviors.

mom_of_two_kids
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Joined: Mon Oct 15, 2012 6:14 pm

Re: Anyone else using Vayarin? It's been amazing

Postby mom_of_two_kids » Fri Jul 12, 2013 10:16 am

Kastania wrote:We recently tried the original form of Vayarin, called ZOOM, which we bought from Israel (where it was developed). As far as I can see, it is exactly the same as Vayarin, just sold under a different name and no prescription required.

My daughter has had a mixed reaction to this supplement and I was hoping someone could shed some light on this. On the one hand, I have seen a definite improvement in speech, with increased ffluidity and more words. On the other hand,, though, she has had what looks like an increase in glutamate/excitotoxicity. She is laughing inappropriately a lot during the day, which she usually never does, she is repeating sounds over and over and is being uncompliant.

On the Vayarin site, it states that one of the side-effects is an increase in SGOT. I know this is a liver enzyme, but is it also an indication of increased excitotoxicty? I like the increased speech but not the rest of the behavious that come with the Vayarin,

Does anyone have any thoughts?


can you tell me at which store you bought the ZOOM? I have been wanting to try Vyarin. I will be in Israel soon, and if it's OTC there I may buy a box and give it a shot and then request a script to continue on vyarin here, if it's looking good.

is it this one at the Eden-Teva store?
http://www.edenteva.co.il/product/72901 ... 7%95%D7%AA

Thanks

Kastania
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Re: Anyone else using Vayarin? It's been amazing

Postby Kastania » Fri Jul 12, 2013 11:56 am

A number of people have pm'd me about ZOOM/Vayarin and where to buy it in Israel, so here is the information I have.

We bought it from a store called Super PHARM. in Tel Aviv. This is a store which is something similar to BOOTS in the U.K.. Here are two branches of this store in central Tel Aviv, along with their phone number.

Gordon street 972-77- 8880730
Dizingoff Center 972-77- 8880170

ZOOM is made of:

Phosphatidylserine (PS) ................................................. 75 mg
Eicosapentaenoic acid (EPA) ...................................... 21.5 mg
Docosahexaenoic acid (DHA) ........................................ 8.5 mg

Here are the contact details of the company, Enzymotec, which makes ZOOM/Vayarin in Israel:

Tel: + 972 74 7177 177
Fax: + 972 74 7177 001
Email: veredb@enzymotec.com
Web site: http://www.enzymotec.com

Mom of two kids, yes, this is the same ZOOM at the Eden-Teva store.

Kastania
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Re: Anyone else using Vayarin? It's been amazing

Postby Kastania » Fri Jul 12, 2013 12:03 pm

What I think I am seeing with Vayarin is an increase in glutamate. The phosphatidylserine comes from shellfish and I think this contains high levels of glucosamine. Although I am seeing increased speech, I am seeing excitotoxicty as well.

Does anyone know of any other Omega 3 oil, which has a similar lower ratio of DHA to EPA, to that of Vayarin? Does anyone know if you can buy DHA and EPA separately?

Finally, I read that Omega 3's should be marine-algae derived. Does anyone use these, if so, which ones?

Thanks

kastania

mom_of_two_kids
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Re: Anyone else using Vayarin? It's been amazing

Postby mom_of_two_kids » Fri Jul 12, 2013 12:08 pm

Ah, ok. SuperPharm is located everywhere throughout Israel, so that makes it easier. I wonder if their prices are better than Eden-teva. I'll have plenty of time to check.

Thanks

mom_of_two_kids
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Re: Anyone else using Vayarin? It's been amazing

Postby mom_of_two_kids » Fri Jul 12, 2013 12:09 pm

Oh and interesting. The Eden-teva web site shows the zoom they sell has having 2x the quantity of active ingredients as you listed.
http://www.edenteva.co.il/product/72901 ... 7%95%D7%AA

JeniB
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Re: Anyone else using Vayarin? It's been amazing

Postby JeniB » Sat Jul 13, 2013 8:44 am

Our previous studies have shown that the in vitro adherence of Encephalitozoon spores to host cells precedes activation and is mediated by host cell surface glycosaminoglycans (GAGs) (12). When adherence is inhibited by exogenous sulfated glycans or augmented by certain divalent cations, host cell infection significantly decreases or increases, respectively (12, 21). These data shape our current hypothesis that microsporidian spore adherence is an integral part of activation and host cell infection. It is speculated, based on these in vitro data, that the ability of microsporidia to infect a wide range of hosts and tissues may correlate with their ability to utilize multiple GAGs for adherence (12).


Glucosamine is an exogenous sulfated glycan. I think that any sporulating organism, may respond this way to a type of sulfated glycan being given. It could be helpful or may make it worse. When I was researching microsporidia infection, one treatment option was using exogenous sulfated glycans like heparin and glucosamine. If one has a sporulating infection, I imagine that endogenous sulfated glycans are in short supply and being gobbled up by the microbes, producing spores. the ionic charge was another way of infection I'd come across. Which would also be a consideration. It turns out that these microbes push out calcium in the cell. I think some forms of arthritis are exactly this type of infection causing it. Altering sulfated glycans in the host, causing excess calcium outside of the cell and "crusting" of cells. The joints have a great supply of this, it may be why vayarian is helping, adding in more of this collagen like material to help with the health of the cells. Maybe it's not excitotoxicy we're/some are seeing. Maybe it aggravates the infection, at first, but if enough is given, it kind of acts as a way for the infection to bind to the exogenous glycan and be carried out, helping to heal the intestinal wall. Since the intestinal wall NEEDs the bodies sulfated glycans for integrity of the barrier. This same barrier is probably what makes up the BBB as well. I wonder if you need to just give it more time to have a beneficial effect? In the studies, they were giving 4 capsules a day, not two. Some kids may need more?

Here's the article on microsporidia I quoted from
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1951136/
Jen
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JeniB
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Re: Anyone else using Vayarin? It's been amazing

Postby JeniB » Sat Jul 13, 2013 10:01 am

The spore wall is a rigid structure composed of an electron-dense outer layer that contains protein and an electron-lucent structural layer containing protein and chitinous material


the outer shell of shellfish is made up of chitin.
Jen
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TamiW
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Re: Anyone else using Vayarin? It's been amazing

Postby TamiW » Sat Jul 13, 2013 3:54 pm

ellenjofishel wrote:My doctor just gave us a script for Vayarin, but it is only 1 per day. Does anyone see success at this dosage? I will start my son at this but just wanted to know if I should expect to increase to see results.
Thanks
Ellen (new member)

We started with the 1 capsule per day and increased to 2 capsules after a week. He does best on 2 capsules, but he's older and a big kid. We see nothing but good stuff. In fact the occasional flushed cheeks that he would get improved very quickly and I haven't seen them come back. Hoping that sticks. He told his dad that during his baseball game he wasn't focusing and the ball was coming at him so he got nervous. I find this huge. All of us have times when we don't focus. We recognize it and are able to then self-correct, which is what he did. This will be a long term supplement for my son.
Tami

janeybird
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Re: Anyone else using Vayarin? It's been amazing

Postby janeybird » Mon Jul 22, 2013 10:12 am

I would like to try Vayarin for my son who has hyperactivity and adhd. I recently had an appointment with the developmental pediatrician who had never heard of it and would not write a prescription. In reading through the Vayarin threads someone mentioned that taking PS Complex along with fish oil may be similar to the ingredients in Vayarin. Is this correct, anyone try this, if so how do you dose?

FatherOf2
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Re: Anyone else using Vayarin? It's been amazing

Postby FatherOf2 » Mon Jul 22, 2013 10:56 am

Presumably it is not the same. In Vayarin, PS is chemically bonded to EPA and DHA. I think Vayarin is a scam and it is no better than taking PS + half tea spoon of fish oil. All marketing of Vayarin is based on how EPA and DHA cross BBB much better if bonded to PS then alone. They had a graph showing that the same amount of DHA given as a Vayarin vs alone leads to much higher concentration of DHA in the brain. But a small detail they conveniently forget to mention is that 1 capsule of Vayarin contains only 8.5mg of DHA and 21.5mg of EPA. Even a small drop of fish oil contains much higher DHA and EPA. In fact, 1/2 teaspoon of Nordic Naturals Children's DHA contains 313mg of DHA and 205mg of EPA. If makers of Vayarin could convince me that taking 1 capsule of Vayarin gives me more DHA and EPA in the brain than 1/2 teaspoon of fish oil, I would be very impressed and surprised because the whole world has been taking DHA through oils for thousands of years, so it must be absorbed too if taken as a fish oil.

Also, I would like to hear from people who started this thread and reported glorious results with Vayarin? Where are you? If you don't work for Vaya Pharma, give us an update. I have been giving Vayarin to my son and so far don't see any effects. I bought 3 bottles of Vayarin following all this hype and now they will go into trash or I will consume them myself as I usually do with all supplements that did nothing for my son. By the way, the closest to Vayarin comes SharpPS Gold. which is PS chemically bonded to just DHA. You can buy it from Amazon here: http://www.amazon.com/Country-Life-SharpThought-30-Caps/dp/B0049OJ01I/ref=pd_sim_hpc_2 or in your local health food store. I gave this stuff to my son too with no effect, then ended up consuming two bottles myself also with no effect.

georgiam
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Re: Anyone else using Vayarin? It's been amazing

Postby georgiam » Mon Jul 22, 2013 7:53 pm

FatherOf2 wrote:Presumably it is not the same. In Vayarin, PS is chemically bonded to EPA and DHA. I think Vayarin is a scam and it is no better than taking PS + half tea spoon of fish oil. All marketing of Vayarin is based on how EPA and DHA cross BBB much better if bonded to PS then alone. They had a graph showing that the same amount of DHA given as a Vayarin vs alone leads to much higher concentration of DHA in the brain. But a small detail they conveniently forget to mention is that 1 capsule of Vayarin contains only 8.5mg of DHA and 21.5mg of EPA. Even a small drop of fish oil contains much higher DHA and EPA. In fact, 1/2 teaspoon of Nordic Naturals Children's DHA contains 313mg of DHA and 205mg of EPA. If makers of Vayarin could convince me that taking 1 capsule of Vayarin gives me more DHA and EPA in the brain than 1/2 teaspoon of fish oil, I would be very impressed and surprised because the whole world has been taking DHA through oils for thousands of years, so it must be absorbed too if taken as a fish oil.

Also, I would like to hear from people who started this thread and reported glorious results with Vayarin? Where are you? If you don't work for Vaya Pharma, give us an update. I have been giving Vayarin to my son and so far don't see any effects. I bought 3 bottles of Vayarin following all this hype and now they will go into trash or I will consume them myself as I usually do with all supplements that did nothing for my son. By the way, the closest to Vayarin comes SharpPS Gold. which is PS chemically bonded to just DHA. You can buy it from Amazon here: http://www.amazon.com/Country-Life-SharpThought-30-Caps/dp/B0049OJ01I/ref=pd_sim_hpc_2 or in your local health food store. I gave this stuff to my son too with no effect, then ended up consuming two bottles myself also with no effect.


I never officially posted on our progress with Vayarin, but it has indeed been a major "WOW" for us. We saw global benefits; decreased hyperactivity, decreased response time, better sleep and finally, for the first time on our 2 yr biomed journey, an increase in socialization. She finally realizes that there are other children around her. Wouldn't say it has brought "normal" socialization, but its definitely a start. We only saw results after 7 straight weeks of giving it to her though. It was very hard to not introduce any other supps at this time, but necessary in order to truly gauge the effects. Don't know how long you have been giving it to your son, but I would do 2caps/day for 10 weeks before giving up. If no effect after that I would call it a dud and move on.

Every parent on this board has used supps which have either helped, hurt or done nothing at all. Hope vayarin works for you, but if it doesn't just relegate the bottles to the "graveyard supp shelf" and try not to get too upset. Going through the same thing right now with benfotiamine. I've been wanting to try this supp for nearly a year now b/c I've heard such great things. We've only been on it for 1 wk at 10 mg/day and I've already noticed increased hyperactivity, more self talking, less "presence". We'll see how it goes. Good luck FO2.

FatherOf2
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Re: Anyone else using Vayarin? It's been amazing

Postby FatherOf2 » Mon Jul 22, 2013 8:42 pm

Thanks. We'll keep trying Vayarin. We are on Virastop again, and it is amazing. My son is much less hyper, more eye contact and more social. I wish it didn't cause what seems to be an allergic reaction as a rash at the corners of his mouth and down the chin. Or could it be that the allergic reaction is what makes Virastop work for us? More histamine? Go figure.

georgiam
Posts: 106
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Re: Anyone else using Vayarin? It's been amazing

Postby georgiam » Mon Jul 22, 2013 10:49 pm

FatherOf2 wrote:Thanks. We'll keep trying Vayarin. We are on Virastop again, and it is amazing. My son is much less hyper, more eye contact and more social. I wish it didn't cause what seems to be an allergic reaction as a rash at the corners of his mouth and down the chin. Or could it be that the allergic reaction is what makes Virastop work for us? More histamine? Go figure.



that's great to hear! I remember reading about a step up protocol here not too long ago that people were having success with. do you do antifungals (natural/rx) along with the virastop to prevent yeast flare?


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