anyone had PANS from hookworm?

[wisdom_seeker]

I know this is an odd question. And may label me as a crack-pot.

 

Five years ago (after doing a ton of PubMed research) my sons and I got a small dose of helminths as immunomodulatory probiotics, and a few months after that my son (DS 11) finally started having colds that didn't immediately turn into sinus infections. He'd not had that for years and years. And allergy shots were no longer as painful, with smaller local reactions, able to go to a higher maintenance dose.

No longer out of school as often. We were delighted.

 

(The theory is an expansion of the hygiene hypothesis, that our bodies co-evolved with parasites as well as bacteria; that the things we are allergic to typically have the same proteins as the parasites we would normally host, but since our immune system can't target the parasites, it targets look-alike environmental allergens instead, or tissues in our own body, producing autoimmune illnesses. The helminths protect themselves by excreting substances that immunomodulate our system to increase t-regs and decrease chronic inflammation. No helminths -> more inflammation. And that's how it seemed to work out for us.

 

But helminths only live 3-5 years, and he's been ill much more frequently the last few winters, so in early August we all were re-inoculated. And then two weeks later he went to school, and after two days of school this kid -- who likes school -- had a sudden onset of PANS, first appearing as intense general and school anxiety.

 

So I've been hoping that the hookworm would serve him well again, and actually treat the PANS once the helminths really mature, but a part of me wonders if this time we might have done him wrong.

 

I'd hate to eliminate the helminths needlessly -- but worry about leaving a stone unturned just because it's not the answer I would want. So that's why I'm asking for others' experiences. I don't think I'd find anything by searching for PANS + helminths on PubMed!!!

 

 

[emst]

Maybe change helminths for a bit? We use biome restoration for the past year and 1/2 its helpful for me and 2 of our kids.

Our benefits w this brand of helminths mainly gut and calming.

[wisdom_seeker]

Thanks for pointing out another option.

 

I'll consider the HTCs, but only if there are still problems once we've done testing for other common causes, Tx, and remediation for stuff like mold.

 

The hookworm were pretty expensive, and, more importantly, had been beneficial, especially for DS16. So I'll cross my fingers and look elsewhere first.

 

in good news / bad news, while he's on antibiotics, the hookworm are mostly dormant, so they're not helping or hurting. We don't know why this effect -- possibly they need a healthy gut microbiome to breed, and their friends keep getting killed off. Or possibly antibiotics are directly toxic to the eggs -- in any case, for another few weeks, while he's on systemic antibiotics, he'll be getting few of the immunomodulatory effects we'd bought them for.

 

Interestingly, after the antibiotics end, normally it takes 6-8 wks before any beneficial effects re-start. However, we can goose them into action faster by a tiny supplemental dose. It seems that the dormant residents notice the invaders, say

"oh no you don't; this is our territory!"

 

and start reproducing again. If we do that boost, (and he's not already in an exacerbation, and doesn't get sick soon after) we might have a quick test of whether that makes him worse.

[mama4]

Hi, I wanted to see if you had any updates with the use of hookworms? I was just listening to a Radiolab podcast where they talk about its uses for allergies and other autoimmune diseases like MS. For anyone who is are interested the part on hookworms starts at 00:32:30: http://www.radiolab.org/story/91689-parasites/

 

Do you know if there are any new studies out on this? I wonder how many people have used it specifically for Pandas.

 

Thanks!

 

Here is a webinar from the Autism Research Institute. It includes information on many conditions:

 

http://ariconference.com/?p=1766

Edited April 4, 2017 by mama4