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. But we 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. I really don’t want to get lymphoma, I just watched my best friend die of cancer, and it would be hard on my children.

I understand the criticism and 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 we 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. These are the risks to benefit ratios.”

If research could just move a little faster. If there were multiple trials for people to sign up and get a safe infection from a well-respected institution, then we could move prove this quickly. 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.
  1. VT’s avatar

    Here’s hoping that your helminth’s continue to help you. I follow your blog as often as I can since I too have Chron’s for the past 20 years and have gone through basically everything. I am down to one trial left and Tysabri. I tried TSO and found that it had ZERO effect on me. In fact while waiting the 10 weeks to try and see if it would benefit me in anyway I got worse and had to have my Prednisone intake upped in order to spare me the fall into deep ill health. I’ve tried Ustikmilab. I know I’ve butchered the spelling of it and saw some success, but the study is too short. I now have this one last chance with the Millenium drug study. I found between trying Tsyabri if this fails or giving up and going for an ostomy. Both horrify me and my experimentaiton with helminths failed. So here’s hoping this one last drug study works and if not that maybe it is a different type of helminth that can help us who have failed with the whipworm. I find it so hard to believe that some are willing to blog about the success of TSO while there is no one saying ..hey this thing failed yet is so expensive.

  2. admin’s avatar

    I think of all the available worms, TSO is probably the least effective, not being a human parasite, even though it’s considered the safest. But which worm to choose? I don’t know if trichuris trichura (human whipworm) would be more beneficial than hookworms (necator americanus), or the two combined, or what. I wish we knew better what to experiment with.

    I’m sorry TSO made you worse. I understand about having only horrifying options left. I would try a different worm before an ostomy…but that’s just me.

  3. BJ’s avatar

    I am about to start my helminthic therapy in about 6-weeks to treat my ulcerative colitis. It was recommended to me to use whip worms which take / infect better than hook worms. I’m also going to start taking prednisone again, about 20 mg, to reduce my flare-ups. I am optimistic bout the therapy but scared of the unknown territory. After 18-years of UC, this is my last option prior to surgery to remove my large intestine.

  4. admin’s avatar

    Good luck! I really hope this works for you. Let us know your side effects and whether it’s effective, OK?

  5. Maureen’s avatar

    What happened????

  6. Anna’s avatar

    I was in the TSO study with Dr. Weinstock almost 10 years ago. It had put me in remission for almost 10 years. Now I am looking to get another dose because I have been flared up for months. Why is this therapy so difficult to get when it has been studied for over a decade now? It saved me as the disease gave me very little life to live. Can someone point me in a direction of how to get TSO in the US ?

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