Waiting for the Cure » old friends’ hypothesis http://waitingforthecure.com/I ... a day in the life of Crohn's disease ... Fri, 16 Jul 2010 14:37:32 +0000 http://wordpress.org/?v=2.9.2 en hourly 1 To the Medical Community, or Dear Dr. Weinstock http://waitingforthecure.com/I/2009/09/29/to-the-medical-community/ http://waitingforthecure.com/I/2009/09/29/to-the-medical-community/#comments Tue, 29 Sep 2009 16:20:31 +0000 admin http://waitingforthecure.com/I/?p=811 Article after article extolling the virtues of helminths’ ability to prevent allergies and autoimmune diseases always end in quotes like this:

“The hope is that the work could aid the development of new treatments which work in the same way as gut parasites, by dampening down or rebalancing the immune system so that the body does not respond to allergens and trigger asthma attacks.”

“Here, the view is presented that assessment of the immunophysiological response to helminths could identify that infection with specific parasites would be therapeutically useful (although many helminths could not fulfil this role) and lead to precise knowledge of the immune events following infection, to identify ways to intervene in disease processes (in the absence of infection per se) that can be used to treat, and eventually cure, inflammatory and autoimmune disease.”

Dr. Joel Weinstock, one of the leaders in helminth therapy, criticizes operations like AIT for going ahead and giving out helminths before the research comes in:

“It is a legitimate field, but it’s been bootlegged,” said Dr. Joel Weinstock, a professor of medicine at Tufts University who’s studied parasitic treatment and is working to test the therapy. “The question is, what are you actually buying [from these companies]?”

Weinstock told ABC that selling parasites online “hurts the science, and when people do this it makes people skeptical.”

I would like these researchers to think about this deeply. How many years away is your medicine that mimics the worms’ effects? How accessible is the one helminth treatment that is sanctioned by Dr. Weinstock? How many trials are currently available that one can participate safely in helminth research?

I cannot answer the first question; my guess is at least a decade. Even 5 years is too long. The second question: TSO costs well over $10,000 a year for a therapeutic dose, and when I tried to get it in 2007, it was blocked importation by the FDA. For trials? There is currently 1; TSO for MS at the University of Minnesota. There will be another one at University of Nottingham for MS, but it’s not even recruiting. And that’s it. According to Weinstock, and most other researchers, we must wait until the overwhelming science proves that helminths do indeed dampen the inflammatory cascade that leads to the suffering caused by autoimmune diseases.

I have Crohn’s disease. I’ve had it for 21 years. I’ve already had 1/4 of my colon cut out and resectioned. I have a narrowed ileal-cecal valve that pains me often. I’ve failed every available medication on the IBD market; the only medicine I haven’t tried is Tysabri, with a 1 in 1000 chance of a fatal brain disorder. The risks of helminths are…anemia in large numbers. But you can control the numbers if you use hookworms, or whipworms. I suppose there is risk of coinfection, and a risk that the companies doling out helminths aren’t giving us what they say.

But I’ve seen hookworm eggs under my microscope and other patients have confirmed O&P’s for hookworm ova. Whipworms can be seen in a colonoscopy. My eosoniphils have risen after infection with hookworms, and I experienced all of the side effects that are usual for hookworms. I have taken blood tests to rule out the commonest co-infections. And a small dose of hookworms lowered my inflammation to 0, since I’ve been taking monthly blood tests before and after being infected. Do you need more proof?

If I waited for your molecule, let me describe my life. Emaciation, night sweats, eating a small handful of blended foods. Bedridden, unable to care for my children, in terrible pain, bowel blockages nightly, diarrhea so uncontrollable it spewed out on the floor as I ran to the bathroom every night. 10 + bowel movements a day. Depends for underwear, anemia, weakness, fever, and fatigue. Perhaps Tysabri would work, but after suffering near fatal neutropenia from 6MP, an allergic reaction to Humira, the fear of progressive multifocal leukoencephalopathy is strong. Would my children enjoy watching their mother die?

I understand the criticism. I understand the concern. I tried to get a helmith immunologist to study my effects from the hookworms at UCSF. I was willing to do before and after colonoscopies, monthly blood tests, tissue samples, to research the immunological effects of hookworms on my well-established Crohn’s. We were rejected by the ethics committee. What more can I do?

I’ve published this blog, been interviewed by CBS, have written to Dr. Prtichard and Dr. Weinstock, tried to spur the movement of connecting us experimenters with researchers, and have been rejected, time and time again. We are willing to do things in a controlled setting, but UCSF is not. I’ve asked for help with quantifiying egg counts, to no avail. My doctor says I am the expert in this therapy, which is a joke. There are immunologists who when interviewed, say this therapy has much merit. But go to your doctor and they will not sanction this. “It’s premature. You must wait for the research. Here, try Tysabri. I hope you don’t die.”

If you moved a little faster. If you had multiple trials for people to sign up and get a safe infection from a well-respected institution, then I wouldn’t balk so much. Study after study is pouring in, in the mouse model, in huge population studies, scientists are proving that the helminth is a key player in a well-orchestrated immune system.

Please don’t be so dismissive. We are suffering horribly. And you are taking far too long.
]]> http://waitingforthecure.com/I/2009/09/29/to-the-medical-community/feed/ 2 Great RadioLab show on Parasites http://waitingforthecure.com/I/2009/09/14/great-radiolab-show-on-parasites/ http://waitingforthecure.com/I/2009/09/14/great-radiolab-show-on-parasites/#comments Tue, 15 Sep 2009 03:31:00 +0000 admin http://waitingforthecure.com/I/?p=768 Very entertaining radio show on parasites:

http://blogs.wnyc.org/radiolab/2009/09/07/parasites/

Schistosome_ParasiteAnd no, this isn’t an alien…

First, they start with Carl Zimmer, a parasitologist who talks about amazing interactions between parasites and hosts.  Then they discuss the hookworm eradication project, where it was found that the South was suffering from anemia, not laziness, and outhouses changed the course of history.  Then, an interview with Jasper Lawrence and his forays into Africa and how he started AIT (why do they never talk about how he got Necator Americanus?) And finally, a pice about toxoplasma gondii, a parasite that comes from cat feces that might influence  human behavior.  We are not all that we think we are.  We are being controlled by our bacteria and parasites as we speak.  Mhwah-ha-ha!

]]> http://waitingforthecure.com/I/2009/09/14/great-radiolab-show-on-parasites/feed/ 2 3 Review Articles on the Hygiene, or Old Friends’ Hypothesis http://waitingforthecure.com/I/2009/02/06/414/ http://waitingforthecure.com/I/2009/02/06/414/#comments Fri, 06 Feb 2009 15:02:30 +0000 I http://waitingforthecure.com/I/?p=414 3 new reviews in Immunology on how helminths are part of the missing link epidemiologically, along with certain other infections, and are probably the reason for the rise in autoimmunity, allergies, certain cancers, depression, nuerological diseases, and atherosclerosis. Click on the HTML or PDF link and you can read them in full.

Rook GAW; Review series on helminths, immune modulation and the hygiene hypothesis: The broader implications of the hygiene hypothesis. Immunology Volume 126 Issue 1, Pages 3-11. December 8 2008

Cooke A; Review series on helminths, immune modulation and the hygiene hypothesis: How might infection modulate the onset of type 1 diabetes? Immunology Volume 126 Issue 1, Pages 12-17. December 8 2008

Jackson JA, Friberg IM, Little S, Bradley JE: Review series on helminths, immune modulation and the hygiene hypothesis: Immunity against helminths and immunological phenomena in modern human populations: coevolutionary legacies? Immunology Volume 126 Issue 1, Pages 18-27. December 8 2008

]]> http://waitingforthecure.com/I/2009/02/06/414/feed/ 0 More articles on Hygiene Hypothesis http://waitingforthecure.com/I/2009/01/31/more-articles-on-hygiene-hypothesis/ http://waitingforthecure.com/I/2009/01/31/more-articles-on-hygiene-hypothesis/#comments Sat, 31 Jan 2009 13:29:03 +0000 I http://waitingforthecure.com/I/?p=367 Another article on worms and the hygiene hypothesis from the BBC. And a detailed, follow-up article that lists the three new Immunology articles that provoked these articles. The popularity of this in recent press is very exciting. Of course, they always say they’re looking for the molecule that the worms ilicit in order to treat autoimmune diseases:

Professor Anne Cooke: “It will allow you to identify pathways of disease and allow you to modify them with small molecules, not the whole worm.”

“Before I would even consider treating a child with type 1 diabetes I would have to be sure it was safe and understand the mechanisms underlying it.

“We are talking about using fractions not the whole parasite.”

What they don’t recognize is that in the meantime, there are desperate patients like me, absolutely willing to try worms to alleviate our diseases. Especially as the choices we have are so dangerous – a small colony of hookworms or whipworms that only cause transient side effects (and this is written by the side effect queen), or Tysrabi, with a 1 in 1000 chance of progressive multifocal leukoencephalopathy? If I were a parent of a child with type 1 Diabetes, or Crohn’s, I would absolutely jump at the chance of trying a light hookworm infection rather than the alternative. How many decades until Professor Cooke and others figure out those fractions of parasites? I would lose another piece of my intestines.

We want worms now.

]]> http://waitingforthecure.com/I/2009/01/31/more-articles-on-hygiene-hypothesis/feed/ 0 NY Times article: Babies Know: A little dirt is good for you http://waitingforthecure.com/I/2009/01/27/ny-times-article-babies-know-a-little-dirt-is-good-for-you/ http://waitingforthecure.com/I/2009/01/27/ny-times-article-babies-know-a-little-dirt-is-good-for-you/#comments Tue, 27 Jan 2009 15:18:41 +0000 I http://waitingforthecure.com/I/?p=360 Yet another article in the NY Times on why babies should be allowed to eat dirt, children should be allowed to run barefoot and not clean their hands before they eat. Basically, the hygiene hypothesis with more quotes from Weinstock and Elliott. Worms, they state, are probably the biggest players in training the immune system:

“Studies (Weinstock) has conducted with Dr. David Elliott, a gastroenterologist and immunologist at the University of Iowa, indicate that intestinal worms, which have been all but eliminated in developed countries, are “likely to be the biggest player” in regulating the immune system to respond appropriately, Dr. Elliott said in an interview. He added that bacterial and viral infections seem to influence the immune system in the same way, but not as forcefully.

Most worms are harmless, especially in well-nourished people, Dr. Weinstock said.

“There are very few diseases that people get from worms,” he said. “Humans have adapted to the presence of most of them.”

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