Anyone else using Vayarin? It's been amazing

Discuss autism diets and biomedical treatments of autism.

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janeybird
Posts: 55
Joined: Sun Jul 22, 2012 10:26 pm

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

Postby janeybird » Tue Jul 23, 2013 10:33 am

Thanks Fatherof2 and gerogiam. Since I can't get the prescription I will trial Nordic fish oil along with PS and see if it has any effect.

Sukee
Posts: 322
Joined: Tue Jan 06, 2009 2:33 pm

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

Postby Sukee » Mon Jul 29, 2013 2:15 pm

Just checking in on the forum and thrilled to see this supplement also bringing "Wow's" to other children. My daughter is still doing amazing, and we are hopeful 3rd grade will be as good as 2nd grade was for us. My daughter is 50 lbs. and she has been taking 2 capsules from the get go. It is the dose the neurologist prescribed. Just FYI
Suzee~
DD-8- 50 lbs Rd: 34-25mg ALA

JeniB
Posts: 5021
Joined: Thu Sep 04, 2008 10:10 pm

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

Postby JeniB » Wed Jul 31, 2013 9:23 am

we are doing well with it too. some may also want to look into adding Phosphatydlcholine as well, they work well together and the brain and nervous system needs both.
Jen
(mom of 3)

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JeniB
Posts: 5021
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Re: Anyone else using Vayarin? It's been amazing

Postby JeniB » Wed Jul 31, 2013 9:39 am

georgiam, you may want to try the coenzyme form of B1, from sourcenaturals. This one is the best tolerated that I can see. It brought on more spontaneous speech, almost overnight. It is a chewable and instantly absorbed...as with our kids and their deficiencies, mixed response, I feel, is because the pathogens are fed by the vitamin, that's why the deficiency is there in the first place. this is why the most absorbable forms are key, so they don't feed in the intestines. I think Benfo, still needs some converting to become TPP? Try the chewables and see what you get. I also saw better response with stopping B6 for a while. You have to give less B6 than B1 to replete B1. Folate also needs to be more normal and certain minerals help a ton, like magnesium. B1 does something with oxalates and breaks up the lesions found in the thiamine deficiency state, so you have more loose oxalate/calculi to be broken down with magnesium. Really increase the magnesium to see if it gets better. Phosphorus may also be needed. PC is a source, I think our kids are missing the major nutrients of phosphorus and potassium in the typical autism supplements, iron too. It can also cause copper to mobilize (I think thiamine is why our copper blood tests finally showed toxicity). I find giving optizinc good with it. You may also look into DMPS as I'm finding this to be the best chelator so far with copper, it also chelates zinc and mercury. All the veterinary studies I'd come across for B1, low copper/toxicity and sulfur seem to indicate these nutrients all interact in a big way. Magnesium and calcium really are majorly protective when copper circulates. So, the body needs more to protect itself. I'm convinced our kids have too much copper, but can't use it. Getting the extra out, using optizinc (which prevents copper deficiency when using too much zinc, it doens't intefere with copper this form) and extra minerals will make B1 work better. Also keeping the pathogens down enough is key as well. Many parents just aren't using enough of the antimicrobials to make a small dent in the infections they have. It's just not enough to use a sprinkle of this or that here or there to treat the gut dysbiosis our kids are struggling with. That's why these vitamins don't work sometimes.
Jen
(mom of 3)

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TamiW
Posts: 3855
Joined: Fri Feb 25, 2005 12:46 pm

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

Postby TamiW » Wed Jul 31, 2013 6:26 pm

My son is doing great with these too still. He continues to take 2 capsules once a day. This summer I haven't been as consistent as I had during the school year. It's interesting that his red cheeks (not phenol related) are gone on the days he takes this.
Tami

georgiam
Posts: 106
Joined: Mon Sep 24, 2012 9:12 am

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

Postby georgiam » Thu Aug 01, 2013 2:06 pm

JeniB wrote:georgiam, you may want to try the coenzyme form of B1, from sourcenaturals. This one is the best tolerated that I can see. It brought on more spontaneous speech, almost overnight. It is a chewable and instantly absorbed...as with our kids and their deficiencies, mixed response, I feel, is because the pathogens are fed by the vitamin, that's why the deficiency is there in the first place. this is why the most absorbable forms are key, so they don't feed in the intestines. I think Benfo, still needs some converting to become TPP? Try the chewables and see what you get. I also saw better response with stopping B6 for a while. You have to give less B6 than B1 to replete B1. Folate also needs to be more normal and certain minerals help a ton, like magnesium. B1 does something with oxalates and breaks up the lesions found in the thiamine deficiency state, so you have more loose oxalate/calculi to be broken down with magnesium. Really increase the magnesium to see if it gets better. Phosphorus may also be needed. PC is a source, I think our kids are missing the major nutrients of phosphorus and potassium in the typical autism supplements, iron too. It can also cause copper to mobilize (I think thiamine is why our copper blood tests finally showed toxicity). I find giving optizinc good with it. You may also look into DMPS as I'm finding this to be the best chelator so far with copper, it also chelates zinc and mercury. All the veterinary studies I'd come across for B1, low copper/toxicity and sulfur seem to indicate these nutrients all interact in a big way. Magnesium and calcium really are majorly protective when copper circulates. So, the body needs more to protect itself. I'm convinced our kids have too much copper, but can't use it. Getting the extra out, using optizinc (which prevents copper deficiency when using too much zinc, it doens't intefere with copper this form) and extra minerals will make B1 work better. Also keeping the pathogens down enough is key as well. Many parents just aren't using enough of the antimicrobials to make a small dent in the infections they have. It's just not enough to use a sprinkle of this or that here or there to treat the gut dysbiosis our kids are struggling with. That's why these vitamins don't work sometimes.


WOW, thanks JeniB. That's a lot for me to digest right now. We did nix the benfo after about 1 wk b/c she was regressing. But I am certainly not averse to getting your feedback and giving it another try. Just want to reply to some of your suggestions as that may shed some light on things:

b6 - don't give. she cannot tolerate the b's at all for some reason even when given td
folate-dd has mthfr and cfd, but methyl folate makes her crazy. probably b/c of overlapping cbs mutation. I know everyone talks about "getting it under control". Easier said than done and always unsure about what the means even!
magnesium-giving 100mg 2x/day of mag malate right now. while on benfo went to 150 2x/day but didn't help
PC-want to try this but afraid b/c of the extra methyl groups which dd can't seem to handle, although we've increased egg yolks and she does fine
iron-have never given b/c I know it feeds infections and causes resistance
optizinc-def want to try this one
calcium-oddly enough, we have never supplemented calcium directly and yet her calcium levels are 3x higher than the normal range, of course our DAN has never commented on this. have been meaning to get everyone's feedback on this. any ideas?
antimicrobials-always afraid we'll do more harm then good. dd was definitely worse off after antibiotics given for one thing, resulting in need for diflucan which gave us c.diff and a 2-3 fold increase in all pathogenic bugs. Have been thinking of adding some td oil of oregano after reading a recent post. right now we do 80 billion cfu's/day of l. plantarum and have been (seemingly) yeast free and no recurrence of c.diff either.

maybe i'll add the optizinc, increase magnesium and try the coenzyme form. what dosage of optizinc, mag and coenzyme do you recommend?

CdB
Posts: 279
Joined: Thu Jan 02, 2014 1:12 pm

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

Postby CdB » Fri Oct 24, 2014 9:17 am

Any updates on this?

andyseattle
Posts: 151
Joined: Wed Jan 29, 2014 4:20 am

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

Postby andyseattle » Mon Dec 08, 2014 10:23 pm

I cannot find Vayarin in my country. So, I use IsoPhos+Nordic Cod liver Oil.

I think, my son, almost 4 yo, has a big improvement with IsoPhos, Phosphatidylserine Isolate.
He's been on it for 2 weeks already.

He 's calmer. less aggressive.
He cares for his brother and start talking to his brother.

Hopefully, in the next 3 months, we can see something more.

Leo
Posts: 187
Joined: Fri Jul 19, 2013 2:50 pm

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

Postby Leo » Wed Dec 24, 2014 2:11 pm

Andyseattle,
do you know what's the difference between Iso Phos and normal phospodyl serine products?
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Leo
Posts: 187
Joined: Fri Jul 19, 2013 2:50 pm

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

Postby Leo » Wed Dec 24, 2014 2:49 pm

The Vyarin poster Txmom (Lisa), had only one post ever - which is about glory of Vyarin. Note to myself - this may be a hidden marketing stuff
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FatherOf2
Posts: 1666
Joined: Mon Mar 11, 2013 1:37 am

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

Postby FatherOf2 » Wed Dec 24, 2014 3:26 pm

We just tried Vayarin again. I didn't see anything. PS works better.

makingitpossible
Posts: 1260
Joined: Mon Nov 12, 2012 10:25 am

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

Postby makingitpossible » Fri Dec 26, 2014 8:49 am

Fatherof2
How long did you try Vayarin (isn't it suppose to take a long time to kick in)? What brand of PS are you giving?
I did find one that was organic and made from sunflower but it only had PS in it.
What about the other phospolipids. Yakso has what 3 different ones in one pill?
I want to try this or Vayarin in another month or two.

FatherOf2
Posts: 1666
Joined: Mon Mar 11, 2013 1:37 am

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

Postby FatherOf2 » Fri Dec 26, 2014 12:55 pm

makingitpossible wrote:Fatherof2
How long did you try Vayarin (isn't it suppose to take a long time to kick in)? What brand of PS are you giving?
I did find one that was organic and made from sunflower but it only had PS in it.
What about the other phospolipids. Yakso has what 3 different ones in one pill?
I want to try this or Vayarin in another month or two.

We gave Vayarin for about 1 month last year. We didn't see anything and stopped. We saw nothing from fish oil, so adding EPA and DHA to PS (aka Vayarin) did nothing for us either. This month we gave Vayarin again, but for 1 week only, and saw increased irritability, but it could have been a coincidence. We give PS from Swanson (sunflower-based). DS is slightly better on it, but hard to say, no wows. We continue PS because it is easy to mix into food and there are no side-effects yet.

I am very concerned about Vayarin purity (mercury content). I couldn't get any info of 3rd-party tests on Vayarin. The company says that it complies with US regulations but doesn't have any documents to support it. Every time I give Vayarin to my son I feel like I am giving him mercury. I am also suprised that Vayarin smells like fish. If EPA and DHA molecules are chemically bonded to PS, I would expect the fishy smell to disappear.

andyseattle
Posts: 151
Joined: Wed Jan 29, 2014 4:20 am

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

Postby andyseattle » Fri Dec 26, 2014 9:25 pm

I used Iso-Phos from Thorne because of these reviews from iherb.com,
So, I think, there is a different in the purity.

" I tried Source Naturals brand, but it didn't work. I don't know why; I think Source Naturals is a good brand. The only difference I can see is that the ingredient in Thorne is called "Phosphatidylserine isolate" and Source N just says "Phosphatidylserine".

" I have tried many, many brands of PHOSPHATIDYLSERINE and without a doubt this is THE BEST. I find that I only need to take 1 capsule (100mg) to receive even better cognitive and memory enhancing effects than much higher doses of other brands. Also, because it is PURE PHOSPHATIDYLSERINE it does not have the same potential for causing SIDE EFFECTS that the other brands do; for example, other brands also contain significant amounts of CHOLINE and PHOSPHATIDYLCHOLINE; wherein too much CHOLINE and PHOSPHATIDYLCHOLINE can cause or exacerbate ANXIETY and/or DEPRESSION; whereas, this product cannot do so, because it ONLY contains PHOSPHATIDYLSERINE, which allows one to supplement with any desired dosage of PHOSPHATIDYLSERINE without risk of SIDE EFFECTS due to SURPLUS CHOLINE occurring. Highly recommended!"

CdB
Posts: 279
Joined: Thu Jan 02, 2014 1:12 pm

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

Postby CdB » Sun Dec 28, 2014 6:29 pm

We use Olympian labs PS and absolutely love it, we saw results immediately. It's made by the same company that makes Vayarin but for a fraction of the price (not that it matters to me, I would pay up if something proved better but so far nothing worked as good) It's soy free, I think it's made of Krill oil.
http://www.amazon.com/dp/B000UZVT5K/ref ... mpian+labs

monkey
Posts: 1
Joined: Tue Oct 20, 2015 2:47 pm

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

Postby monkey » Tue Oct 20, 2015 2:52 pm

Hi! Any more updates on folks giving Vayarin to their kids? Anyone here using it for autism symptoms?

Thanks!

Mom23boys
Posts: 3
Joined: Tue Mar 22, 2016 10:03 am

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

Postby Mom23boys » Tue Mar 22, 2016 11:18 pm

I found something that looks similar to the ingredients called Conjugated Phosphatidylserine with DHA

Here's the link to it at vitacost https://www.swansonvitamins.com/swanson ... mg-30-caps

anyone heard of it or tried it?

BlearyEyedAlchemist
Posts: 791
Joined: Mon Sep 22, 2008 8:54 pm

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

Postby BlearyEyedAlchemist » Sat Mar 11, 2017 7:19 pm

We've been using it awhile. Alot easier to use than Speak. HOWEVER, 2 capsules is a NOTHING amount of all the essential EFAs for my child. I'm either going to have to bump it up ALOT according to my MAPS guy or try something else.


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