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JenniferG

Biome Restoration...Helminths

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www.biomerestoration.com

 

 

Has anyone heard of this company/concept and/or tried it?

 

It is sort of the same concept as probiotics, but instead of good bacteria, it's good parasites.

Edited by jenniferg

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jenniferg,

 

Yes I have heard of this, and as a matter of fact, DS's Integrative Physician has suggested we check into this. She said most people can't get over the ick factor, but has seen some positive benefits...I was one of those parents that can't get over the ick factor and decided not to try it.

 

If you do try this, please let me know.

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We are on our 4th dose and are seeing positive improvements...small ones, but it is progress. Cytokines don't begin to come down until after 9 weeks, so we are very early....but there is A LOT of hope here!!!

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Oh that is awesome!! Thanks for updating, I'm really interested in this. Feel free to PM me too.

Jeannie

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I am curious if they gave you a relapse percentage when going off/ completed?

It's not a protocol I can get behind, having fought off parasites already *shudder*

I know there are avenues we've taken that aren't popular with everybody, either, totally not judging.

Last time I heard, it was pretty expensive, too.

But I am thrilled for your progress!

Gosh this PANS journey has a lot of twists and turns,

and is not a poor man's disease :-(

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It is a parasite that used to live in us before we "cleaned up". It doesn't attach and grow and live in you. It lasts 2-3 weeks.....which is why you need to dose that often. I don't believe it is something you end/stop. From what I was told, it's a life long thing. TSO (pig whipworm) is VERY expensive. For a bit, I didn't understand why everyone was saying it was so expensive and I was paying $100 for 4 doses (with shipping from England). It is because we are doing HDC (larvae of a rodent tapeworm found in beetles). I know, I gag everytime I read it or say it. It is a clear liquid. You see NOTHING. It needs to be taken with a fat. So, I give it in a small amount of Chocolate Almond Milk. Honestly, you get to the point where you have tried EVERYTHING. and it's working. It's doing exactly what she said it would do.....if it continues I plan on making a big stink about how well my kids are doing and how everyone should try it. Especially, if you have gut issues. :)

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Jenniferg could you please share how your son is doing with the helminthic therapy? I just got the heminthic and i am about to give them to my son, but i am a little bit scare to make the things worse for him. Could you share what is the protocol? I only got instructions of how to give them to my son, but i do not know if i have to do something also.

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We dose every 2 weeks. We are up to 10 for the 7 yo boys and 20 for my dd11. I put it in a small amount of milk and have them drink it. That's it! The easiest treatment so far in this horrible thing called PANDAS. You obviously can't be on antiparisitics. And we take OLE. So she has us stop for a few days. Feel free to ask any questions.

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What we were told was that usually around weeks 10-16 you begin to see cytokines drop. When we started I saw a huge improvement in a week. They had me increase the dose. They started to worsen (my kids react to everything). So we dropped the dose back down and have just recently started to go up. Slow is much better. My dd11 stool inflammatory markers have dropped. The boys have gone up. They don't think it's from the HDC. I do. So I dropped them back again.

 

Typically 3-5 days after you dose you see a mini flare for a couple of days. My boys get hyper when they flare, so that's what happens on those days. My dd gets an increase in OCD/anxiety. Then it subsides for the remainder of the 2 weeks. They suggest Motrin and Bemadryl for these symptoms. I stick it out as much as I can.

 

We are on week 20. I have seen a gradual improvement. Both boys had ear infections and I didn't even know!! Usually I can tell by their behavior....increase in OCD, anxiety and ADHD. That has happened twice. It is definitely on my list of things they will be on long term. Just like Fish Oil and probiotics. They are seeing remarkable results and there are a lot of studies being done for other autoimmune diseases.

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Hi,

 

Glad to hear things are going well.

 

Our doc also wants us to do this for our DS 24. Still haven't decided what to do yet.

 

We also have been approved for 1 IVIG so far....thinking of going with the IVIG because I too can not get over the ick factor and we have treated for parasites several times.

 

Heard this was the poor man's IVIG but if its life-long then how is that inexpensive.

 

Wouldn't IVIG be better if offered?

 

Doesn't both do the same thing?

 

frikfrak

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Just jumping on - jenniferg, so happy to see your recounted experience. Ours is very similar though our kids are older and started at 30, ds is at 60 though his older sister is staying at 30 so far they had a huge run of improvement to date. Just did bloodwork on Monday. Will see if any numbers have improved. QUESTION DS has a virus and wicked (pandas) post viral OCD which does not seem as bad as its been in the past but its still an issue. Thoughts/experiences? Thanks!

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Jenniferg,

 

How is the helminth therapy going? We have just started. I'm curious to see if you are still seeing progress.

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