So, looks like the FDA discovered Jasper and AIT’s orginization. Doesn’t look good. We may be on our own from here on out. Considering the FDA has frequently blocked importation of TSO, which is supposedy created in a reputable pharamaceutical company in Germany and/or Thailand, I don’t think they’re going to OK a hookworm incubation in the US.
First incubation attempt will be today. I’m going to try mixing the 31 eggs I just counted in their salt-water solution into a few grams of my husband’s stool, and smear it on a piece of filter paper, placing that in a petri dish with some filtered water, then place that in a dehydrator at the appropriate temperature. I’ll write a hookworm incubation 101 if I’m successful.
-
This is really awful news. Good luck with your incubation.
-
No good, no good!
DIY is our last hope ?!
-
I just read about the FDA mess. I’m looking forward to your “Incubation 101″ write-up. If it doesn’t work, I guess we can all take a shoeless field trip to Cameroon!
-
I agree this awful – I have no faith in the FDA (likewise the MHRA over here in the UK) to do the right thing.
Just last week we were discussing helminth therapy with our daughter’s doctor at Great Ormond Street Hospital and in principle he wasn’t against it… and now this news.
To say I’m devastated is an understatement.
I hope your incubation works.
All the best.
-
We’ll see how it pans out. Hopefully worse case is that AIT moves back to Tijuana. There’s still wormtherapy.com in Tijuana and the immunologica in Spain.
If AIT is shut down, and they give us permission, perhaps DIY is the next step. I need to not be the only one figuring out egg counts and incubation, though. Also we’d need to check our legal rights; could we get in trouble sharing for free? Any lawyers or scientists out there?
Roger, maybe contact U. of Nottingham (Professor Pritchard is in charge of the investigations) and see if there is any chance a larger Crohn’s trial (or whatever your daughter’s disease is) on the way. Plead that you’re interested in trying the therapy, just don’t have access to it. There’s enough “proof” pouring in that we shouldn’t have to wait years for further studies. You might try to coordinate the doctors and do a case-study on her.
We need to step up and make this therapy available. Any more thoughts on how?
-
Hi Debora
I have been in touch with David Pritchard already and actually emailed him again just this morning to ask the question about new trials – of course the only problem there is that trials would have to be double blind placebo to make any sense to the medical world, that being the case we would not know if our daughter had been given worms or placebo… and I think the previous Crohn’s trial was quite short.
My daughter has Crohn’s – diagnosed Jan 07. She’s currently tapering off a 2nd course of steroids and is now on 6-MP (previously she was on Azathioprine, which didn’t maintain remission).
I am hoping to engineer (not sure how!?) some more interest at Great Ormond Street Hospital – some Docs there are familiar with helminth therapy.
I agree we shouldn’t have to wait for further studies, especially when (compared to drug therapy) the helminths are relatively benign and in any case could be eradicated simply and quickly if required.
I can’t see how we could get in to trouble for sharing for free, but we need to do all we can to make this a recognised treatment alternative – starting with some large scale, long term trials?
This is a start I guess – just talking and sharing information.
-
You’re doing a wonderful and important thing. Good luck!
-
Would convincing the Mayo Clinic and CCFA about the benefits of Helminthic therapy be a good start? They seem like they would be good advocates to have on our side.
-
Yes! I’ve been educating my doctor, (Dr. Terdiman at UCSF) and he and I were interviewed for the CBS piece, as well as the chief of immunology at UCSF. That was a good start. It’s still not enough, but now that the celiac trial’s been published, and a larger scale one is on the way, it has more legitimacy. I don’t know when the U. of Nottingham Crohn’s trial will be published, but they only tested 10 worms for 3 months, so it may not have had a great outcome. Why the hell is it taking so long?
We each need to educate our doctors, perhaps all of us contact CCFA. God knows there is a need for safer options for Crohn’s, seeing as the biologics come with cancer risk, and Tysabri (my only drug left) has a 1 in 1000 chance of death. Not OK. Hookworms obviously work and are low risk. Let’s storm the gates.
-
do you know anything about these guys? a friend of mine gets her helminths through them.
-
Ovamed sells TSO, or trichuris suis, or pig whipworm. They are a reputable pharmaceutical company that operates out of Germany and/or Thailand. You drink the ova every 2-3 weeks, since the pig whipworm cannot colonize in the human, it is a pig pathogen. Dr. Weinstock out of then U. of Iowa (now Tufts) did two studies – 1 double blind with Crohn’s, one open label with UC, and it showed around 70% remission for Crohn’s, 50 or so for UC. The problem is it’s expensive, and you have to keep drinking the ova indefinately since it won’t colonize. They are currently doing a study at U. of Minnesota for MS. Definately worth checking into, since you can get it mailed to your door, but the last I checked it cost about $10,000 a year for the maximum dose. I’d get a pig and infect it and somehow harvest the eggs. Pharmaceutical companies don’t cover it yet, but they should.
-
Hi, any updates on this therapy? I have a 12 year old son who has crohn’s and doesn’t seem to respond to any traditional therapies. He is allergic to 5asa, had blood markers go up with imuran, and hasn’t had good results with remicade or humira. I want to try helminth therapy but don’t know where to start. I see that some of these therapies cost $2,500 to $4,000, but I’m not sure how often you have to reinfect or which worm works best for crohn’s. I read on this site that there is a diy route? Any help would be appreciated. We are going to take our son to Cincinatti Children’s Hospital (we live on the west side of the country but hear it’s the best IBD clinic in the US)so could travel to another clinic if there was someone in the us working on helminths.
Thanks,
Stacey
-
Hi Stacey,
No DIY route yet, you need an organism to start with. After that, you can reinfect at will once you figure out how.
Right now, you can buy hookworms in Tijuana through wormtherapy.com You can get hookworms from autoimmunetherapies.com but they won’t ship to the US, so you have to get it from someone you know in Canada or Mexico. You can purchase TSO (pig whipworms) through ovamed.org, and that you can get delivered to your door.
TSO is probably the least effective of the worms since it is a pig pathogen, but for a child, it may be the only one to try since it has research backing it and you *could* get in trouble with hookworms potentially, but other children have tried it. (see Newstarnutrition.com) I’m not sure wormtherapy will sell to minors.
No one in the US is working with helminths except for one small study using TSO at U. of Wisconsin for MS. The Nottingham Crohn’s trial is completed, so there is currently no Crohn’s research with worms. I’ve heard that there will be a large TSO trial in Europe, but I don’t know when.
So it’s either try TSO, or try to see if you can get hookworms. Good luck!
-
Of course you can get in trouble with sharing for free. The law has got nothing to do with it. it’s just that when one centralized person or organization is selling it then it is much easier to go after then individuals. fuck them, go ahead and do what you are going to do. the government and most doctors don’t want people to be healthy, the idea that people will help themselves scares them.
-
Hi All,
I have been buying TSO from Ovamed since 2006 and it has made a big difference. It has taken a while to refine the dosage and now I am finally winning my battle against crohn’s. I can’t afford more than the lowest dosage, 500 ova, so, I will be buying hookworms and human whipworms from Autoimmune therapies -Jasper Lawrence in the near future. My thinking is, diversity in gut flora is good; my gut flora is too limited. I happily acknowledge that this is an experiment but it is safer and has no side effects compared to all of the drugs I have encountered in my 45 year fight against crohn’s.
For those who have no alternatives left there is nothing left to loose, which was my position when I found helminth therapy.
The big pharma. companies do not want their consumers to no longer need their products, which is why I think they are trying to stamp out the use of helminth therapy. A cure for autoimmune diseases would hurt their bottom line.
There is strength in numbers and there are millions of people suffering from autoimmune disorders. If they only new about helminth therapy. I think we need to band together and fight for our right to be healthy.
This is a link to Jasper’s Lawrence’s helminth therapy journey, it is enjoyable to read and has plenty of research mixed in at the end. http://www.asthmahookworm.com/
May we all continue to press forward in our mission to improve the health and lives for all.
15 comments
Comments feed for this article
Trackback link: http://waitingforthecure.com/I/2009/11/08/the-fda-and-ait-and-hookworms/trackback/