Comments for Waiting for the Cure

Comment on What Next? by Mike S

Mike S — Tue, 09 Mar 2010 18:39:27 +0000

Unfortunately, there are even more unknowns with human whipworm than with hookworm, and almost no scientific studies/data available. From what I hear, it appears (based on AIT’s data) that only about 15% of the ova survive and attach. And it seems unclear how long they live, between 1 and 3 years, or more? Although this is far, far better than pig whipworm (and cheaper), not to mention probably more effective given the fact that pig whipworm die within 2 weeks, while human whipworm can mature and live ‘long happy lives.’

I’ve been emailing with a biologist (I wont use the name here) who is currently hosting a high number of whipworm for UC, and he seems to be doing well, and knows a lot about the experience as he has been self-experimenting with dose, etc (through AIT I believe)

I plan on taking one big dose of whipworm (recommended by Marc), given that I have to drive out to Canada for it. I hear the side effects are not bad except for a day or two when they molt about two weeks in. Once they’re all settled, I may try a second dose if I’m not having good enough results.

For me, the most frustrating thing is not knowing how many survive, and have no good metric for measurement (although at least one can do what you do, the mcmaster counts)

I still have much to learn, but am determined to give this a shot, of course, once AIT is ready. To their credit, Marc has been in regular contact with me, even though they have had continuing troubles. So I wait and hope.

Ultimately, I would like to host hookworm as well, as it seems they work more systemically while whipworm work more locally.

Comment on What Next? by admin

admin — Sun, 07 Mar 2010 14:49:47 +0000

I was planning on trying a dose of whipworms but then I got pregnant, and then Jasper had to flee America, so I missed my chance. They keep saying they will be shipping it soon, but it seems like they haven’t been able to find a place to start the lab?

I wonder about the attrition rate as well? How many patients have they had trying it now? What is the best dosing schedule? How many ova are infectious, and from those doses, how many attach and stay in the colon?

Though I sympathize with AIT’s plight, I’m frustrated by the lack of answers to these questions, and the veiling of data. It would be nice to know what other patients are experiencing, and what efficacy they are getting.

What it’s really time for is multiple safe sources, and a growing data set that is unconnected to a commercial company.

Until then, I’ve got hookworms for now. If anyone finds an alternative source of whipworms, let us know.

Comment on Who are you and where do you come from? by admin

admin — Sun, 07 Mar 2010 14:44:17 +0000

Call it market research if you will.

Comment on Crohn’s disease costs money by Mike S.

Mike S. — Fri, 05 Mar 2010 18:06:41 +0000

!!!!!!!!

Where are all the millionaires with IBD who want to start up a helminth lab.

Comment on What Next? by Mike S.

Mike S. — Fri, 05 Mar 2010 18:01:57 +0000

I think you should consider trying a small or medium dose of human whipworm. Marc was telling me that they interact specifically with the mucosa of the colon for a localized effect. I have ulcerative proctitis (almost all my inflammation is in the rectum/anus). Of course, I’ve also been told at various times that I have UC, and also “crohn’s-colitis”.

Make sure your symptoms have stabilized, so you can make sure that when/if you add whipworm, any benefit is thanks to them.

Plus, I hear that you “should” feel the effects of whipworm relatively quickly, within a few weeks as opposed to months with hookworm.

Although, I’ve been waiting months for AIT to ship me a dose of whipworm, and I realized they’ve been through trouble, and I’m willing to drive into Canada to get them, it still seems that they’re not up and running yet. Marc still tells me they’ll be shipping whipworm soon, so I’ll continue to wait, there is no other source.

Comment on Crohn’s disease costs money by admin

admin — Mon, 01 Mar 2010 16:41:35 +0000

What about TSO? Non infective pork whipworms, but they still are constantly banned importation by the FDA, and have to have studies here to be designated the proper status so that they can be bought. At least someone got to write it off on their medical spending account…

It feels like an uphill battle.

Comment on Crohn’s disease costs money by Leo F

Leo F — Mon, 01 Mar 2010 15:29:20 +0000

The live L3 Hookworm larvae may have been designated (erroneously) as a drug but the Hookworm eggs could never be defined as a drug as they are not infective and have no pharmaceutical effect. Therefore the supply of eggs for incubation or scientific inquiry is not prohibited. A company supplying eggs could do so internationally…

Comment on Transdermal Magnesium – Aaaah by redtelephone

redtelephone — Sat, 27 Feb 2010 17:29:29 +0000

Just wanted to point this out, if you weren’t aware. Taking magnesium orally will cause loose stools or increased bowel movements. And taking calcium orally binds you up, causing less frequent bowel movements.

Comment on Crohn’s disease costs money by ragamuffin

ragamuffin — Fri, 26 Feb 2010 14:35:07 +0000

well put. every single one. cheers (and jeers).

Comment on Transdermal Magnesium – Aaaah by admin

admin — Sun, 21 Feb 2010 17:01:36 +0000

I plan to soak morning and night when I get home, I figure the more the better. I’ll post some links to more information when I get home.