Thursday, May 28, 2009

Judy Chinitz Helminthic Therapy: Worms, Autoimmune Disease & Autism

Last week a group of parents, therapists and other professionals gathered to talk about Helminthic Therapy, otherwise known as parasite (worm) therapy. It was apparent to me that even the most stone cold die hard mother warrior types could get a little squeamish with this topic. The idea of intentionally putting a worm into your child can seem a little off beat if not nuts but with the possible end result of helping your child out of the depths of autism we were all present with bells on to listen up carefully.

Judy Chinitz best known for her book: "We Band of Mothers" led the charge on this most curious subject.She brought along Dr. Marc Dellerba who holds a PHD in Molecular Science. They spent the better part of two hours explaining how this newly recognized therapy can be very helpful for autoimmune disorders. It is based on the Hygiene Theory, that we no longer come into contact with enough germs tomake our immune system get strong and work properly.

Mark and Judy focused on two different types of parasites: TSO and Hookworm, the latter of which Dr. Dellabra's company Autoimmune Therapies provides for purchase.

Judy started the presentation by explaining to us how her fascination with these worms started many years before they were actually available for purchase to the general public. She had heard about Helminthic therapy really helping people with IBS and Crohns and she thought this could really help her son. At the time, Judy's son Alex was really sick with gastrointestinal illness. So the mom on a mission called up the University of Iowa that was doing a study and asked for her son to become a part of it. They said no since he was a child and also considered too sick. Well years later Judy got her wish which was to get her worms. She explained that it was well worth the wait, they really helped her son tremendously. Alex made huge leaps cognitively, which only fueled Judy's excitement about this therapy. She began to tell her clients in her practice as a nutritionist all about it.

Right now she actually gives her son TSO and Hookworm, both of which were described in great detail to us.

What we learned is that TSO was available first. It is the Pig whipworm. The way it's administered is that the ova come in a glass jar with saline. This parasite is microscopic so it is not visible to the naked eye and thesolution has no taste. As a mom who just started this therapy only weeks ago, I have to say it is up there with one of the easiest things to administer that I have tried. And you only give it once every two weeks. The dosage is something you need help with by a doctor or nutritionist even though you do not need a prescription to purchase it over the internet-yes purchasing worms over the internet! I know your probably thinking what next right? I have to admit I did feel a little bit like a crazy person when I did it and when I first gave it to my little guy. However on day 3 when I saw a significant cognitive improvements it was difficult to feel that I was doing anything but really trying to help my son.

Here are my personal pros and cons, please keep in mind as I write this I have only been doing this for 4-5 weeks at this point. Pros: big leap in cognitive improvement, much better listening with less self directed behavior, more expressive language, less gas, stools formed with normal color. Cons: a little expensive, my son gets pretty emotional for a couple days after dosage.

The reason Judy went to the Hookworm was to bring down the monthly expense. The cost is less and they last longer, but they are administered differently. Marc explained that they are applied to the skin on the arm under a bandage. They enter through the skin and make there way to your small intestine where they can reside for years. They do not replicate inside the body, so there is no need to worry about infestation and it is difficult for anyone to catch it from that person who has the hookworm.

The good news is that if at any point your child seems uncomfortable or you would like to stop for some reason you can simply take medication and get rid of them rather quickly which I know gave me a feeling of confidence.

What pushed me over personally into giving this therapy a try is that I understood that these worms effect the immune system in such a way that they turn off the autoimmune switch which results in the body producing less inflammation. In essence it is supposed to normalize the immune system to work properly.

I also need to point out that many parents who get a positive outcome need to continue the therapy to sustain the positive results, some longer than others. There was one mom present in the audience who did the therapy for five months and after achieving desired results stopped and months later her son had sustained the positive results. So like all the other therapies it is different for each child.

Now Judy and Mark did explain for reasons we don't currently understand is that the effect on adults is much quicker sending many into complete remission. In children the effect has not been that miraculous. However, many children leap ahead, some even talking for the first time in their life. Not all children have this positive outcome just like with the other biomedical and holistic therapies they don't effect all children in the same way.

This presentation like many excited me by the mere fact that parents and professional never stop looking, never stop trying and never stop sharing information with one another in hopes of helping all the children.

8 comments:

Khalid said...

Although this is not my field, I was able to find out that such worm treatments have been tried in the auto-immune disorders of the intestine such as Crohn’s disease and the Inflammatory Bowel Disorders.

What I understood from the lecture was that worms can help restore a balance in the various parts of the human immune system (The TH1 and TH2 cells) . Perhaps the worms can do so as a means of their own survival in the human gut. The speakers did not say that the worms correct an existing immune deficiency or lower a hyper-immune response. The speakers or one of the moms did however say that some of the children who were on the worm therapy were able to get off the immunosuppressive drugs and also did not need IV IgG (immunoglobulin).

It was clear to me that this sort of treatment is only for those children with autism who also have immune/allergic gut problems. The TSO treatment is expensive and the product is imported from Germany. The cost of each dose (2500 ova) is anywhere between 300-500 dollars based on the Euro exchange rate. The dose needs to be repeated every two weeks. The speakers spoke about obtaining the eggs of the human whip worm, since they can stay in the gut for up to two years and hence will reduce the overall cost of treatment.

The treatment has potential side effects including anemia (worms live by sucking small amount of blood from the intestinal membrane) diarrhea and abdominal cramps among others. As much as is known, the product has not resulted in any other infections. Whereas the treatment with TSO involves ingesting the clear salty solution, the treatment with hook worms involves inoculation with parasite larva through the skin. I think it also involves traveling to Mexico for the inoculation.

As a physician, I could understand the immune modulation theory. I am however concerned about untoward and unexpected side effects.

I would hope that the TSO dose is tested from time to time to assure that it has the number of ova as advertised. I would like to see blood counts monitored to assess if anemia develops.

Although the speakers pointed out that they do not have funding to perform blood tests and to study the changes in various immune markers.

However it will greatly help to promote the understanding if it was done as a scientific study. If they can not do lab tests, they could collect certain clinical indicators before and after the treatment. Such data collection will cost very little in any. The data set could include clinical parameters such as weight, frequency and amount of diarrhea, temperature, melt downs, rashes if any, hours of sleep, other illnesses that may occur like colds, flu etc, other measurable parameters of behaviour. It will be helpful to keep meticulous records of various batches of TSO shipments, their use and any unexpected side effects. As I understood, the treatment is being done by individual parents and not through a central office. If so, then it does not allow for collection of any data.
I also think that we should try to find out if and when Mt. Sinai may start a clinical trial and work with them.

Khalid Rehman. MD.

David said...
This comment has been removed by a blog administrator.
PJM said...

@ Dave
You are an idiot. It may or may not work but, it is not abuse. Millions of people take probiotics everyday and they are live microorganisms. So what is the difference?
Try to open your small mind a little, Davey ;^)

Helminthic Therapy said...

Yeah, look at the research on the topic: http://opensourcehelminththerapy.org/mediawiki2/index.php?title=Studies

Denise said...

Hi -
I am exploring this therapy for my son. He has multiple life threatening food allergies and asthma - anyone have any personal experience with those imbalances and helminthic therapy? I am excited about it, but also a little afraid and would love to hear some personal stories re that.
Thanks
Denise

Helminthic Therapy said...

I got rid of my food allergies after getting 35 hookworms. I had no side effects from them whatsoever. Email me at helminthictherapy (at) gmail for more info

Niraj said...

We are in the same place as Denise- weare exploring therapy options for our 9 yr old son with svere (and some life threatening) food and seasonal allergies + absorption issues. Any info/advice would be greatly appreciated

Liz said...

I'm fascinated by helminthic therapy. I first heard about it on WNYC's RadioLab and had figured it was just for allergy sufferers. But I've read about people having results for behavioral issues, eczema and Crohns Disease.

I would love to talk to someone who has been through it so I learn more. Please email me at ElizabethDLongNYC at gmail

Thanks!