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Posted

I personally think it sounds way more risky than IVIG and like a desperate measure of the medical community who doesn't know what else to think of. Maybe a more comprehensive approach to assessing our children's real health and medical issues would be better than this fractured archaic gesture. Personally for me, this highlights everything that is wrong with our medical system.

Posted

I'm not sure why you think this is archaic since I have never heard of anything like this before - unless maybe you are thinking of leeches? And I'm not sure why you are railing against the medical community since this came from the research community & has not found its way into mainstream yet (& I suspect it won't be accepted readily either).

 

Anyway, my DH asked me to look further into it & it turns out that they are using whipworm from pigs - not the one that infects humans - which is why TSO patients have to continue to ingest them since they only pass thru us rather than inhabit. So doesn't that minimize the risk from this radically more than that from IVIG?

 

One parent on a forum I was perusing asked why so many of the same people who think nothing of deliberately ingesting beneficial bacteria & fungi are so horrified by this when it's just a new kind of probiotic. I thought that was a very interesting perspective...

Posted

Hi - I tend to agree that this isn't archaic.. it may be a bit yucky thinking of downing a few hundred worm eggs as your treatment but hey if it works I think I may take that option over drugs or pooled blood products.. dunno?

 

It has certainly been looked at as treatment for Crohn's, asthma, allergies and now, according to the following article, for Type I diabetes.

 

http://www.diabeteshealth.com/read/2010/04/12/6639/parasitic-worms-could-become-basis-for-type-1-therapy/

 

I suspect as a treatment it comes with its own set of issues, as they all do, but I get the hygiene/autoimmune hypothesis and can see where this would fit in with that.

Posted

Of course, we all have our own opinions about things, that's a good thing.

but i treat hookworm and other infestations in my practice. its nasty, it causes GI problems and nutrient deficiencies of all kinds. this is not what a "pro-biotic" does, by definition, it does the opposite.

 

There may in fact be, as I have read, some immunosuppressive properties that hookworms have due to the chemicals they secrete in the gut that make the gut less likely to attack it, its it's own lifesaving measure. I can the benefit of this kind of chemical. And perhaps if this chemical is extracted and patented by big pharma it can be used in a health promoting manner in autoimmune dysfunction and other immune regulating problems. Absolutely.

 

But in my personal value system, creating a potentially damaging condition to fix another, well, it just reminds me of how many MDs will use a medication and then end up adding 5 medications to fix the side effects of the others medications and how that is for people in my practice. But that's just me, a philosophical thing, I think.

 

If any of you decide to undertake hookworm infestation therapy, i'd be interested to see how it goes, for sure!!

Posted (edited)

I think I understand what you're saying. My initial reaction was similar to yours (I used to work in the healthcare field, as well, though we mostly dealt with pinworm) - and in my exploration of this topic, I discovered that some people are actually using human whipworm & hookworm which I also find pretty worrisome.

 

Still, as I watch our 18 yo son continue to deteriorate to the point that he is less functional than my 4yo, I can also understand their desperation - a worm infestation is truly insignificant compared to what we're dealing with right now. (Though, as I mentioned to my DH, it would be our luck to end up with PITAND AND a worm infestation!)

 

But TSO is not dealing with HOOKworm (necatur americanus) which, as you suggest, can really damage the intestines. Or even the human variety of whipworm (trichuris trichiura), which isn't quite as nasty as hookworm, but can still do a number on the gut. This is the pig version of whipworm (trichuris suis) which they have studied well enough to know that it does not inhabit the gut.

 

There have been some very rare exceptions, but those have been in people whose guts had significant damage before they began where it sounds more like the worms got caught in pockets of damage & just "set up house" where they were stuck. (Remember that most of the people using TSO right now are patients with IBD whose cases are not responding to the initial treatment options so these are people with serious gut issues already)

 

And I believe the potential is there for any of the helminths to cause an allergic reaction of their own, and while that is not common, neither is what our kids are dealing with, so I do wonder if some of them might be more predisposed than average to developing such a problem.

 

While I am exploring the research as I'm able, we're not likely to try it anyway even if we do become convinced by it because the price puts it out of our reach at this point. It does seem worth keeping an eye on at any rate. Hopefully, they will be able to figure out how the worms accomplish the Th shift & find a way to do it without the critters - or at least render them harmless in some way beforehand. If it becomes approved in our country, the price will be significantly better & insurance co's will probably even pick up on it as it would be cheaper than traditional therapies - but we're talking about a minimum of a decade or more down the road from what I've seen so far.

 

Edited to add: Wow! I just noticed the number of views of this thread...

Edited by GraceUnderPressure

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