Anyone heard of TSO (Trichursis Suis Ova) for reversing autoimmunity?

[starfish]

Has anyone here ever heard of, considered, or used TSO (Trichuris Suis Ova) therapy in an attempt to reverse their child's PANDAS symptoms?

 

I first heard of this in 2007, in relation to Stewart Johnson's son with autism. As a result of TSO therapy, his son's crippling OCD symptoms were markedly reversed, presumably due to reversal of autoimmunity. The theory is that by giving the immune system a legitimate "target", it will stop attacking itself.

 

Though admitedly a rather "unusual" treatment, it seems less risky to me than IVIG. I just wondered if others may have considered it or tried it. It is expensive though not nearly as expensive as IVIG and certainly not nearly as invasive.

 

Check out www.autismtso.com for the incredible story of Stewart's son and background on TSO therapy. It has been studied in Chrons disease, allergies, and MS, and I believe a small trial in autism is underway.

 

Beth

[dut]

I had never heard of using worms as therapy until I saw this article recently from the BBC

 

http://news.bbc.co.uk/2/hi/health/7856095.stm

 

"Researchers in Nottingham are investigating whether giving hook worms to asthma sufferers can cure their condition.

 

Another group in the US is trying a pig worm on patients with ulcerative colitis or inflammation of the colon and bowel.

 

And scientists in Cambridge have proved that giving an extract of the tropical worm which causes bilharzia to mice can stop them developing type 1 diabetes"

[starfish]

Here is the original online post by Stewart in 2007 that got me interested in TSO:

 

My name is Stewart Johnson and I am the father of a 16

year old son with autism. After researching autism and

living through my son's extremely difficult behaviors

for 14 years, I came up with a hypothesis about the

cause of agitation, self-abusive behavior, and other

symptoms of this disorder. I researched the topic in

the medical literature and found support for the

hypothesis. Based on my hypothesis, I also found what

I believed to be a new potential treatment that is

currently being used for Crohn's Disease and

Ulcerative Colitis, two autoimmune disorders. I wrote

a research paper and presented it to my son's doctor,

who agreed that this was well researched, plausible,

and should be pursued.

 

I got the agent and we began treatment of my son.

After 10 weeks, all my son's symptoms of agitation,

self abusive behavior (smashing his head with his fist

and biting his hand), anxiety, obsessive thoughts and

behaviors, impulsivity, compulsivity, behavioral

rigidity, repeated questioning and stimming completely

disappeared. He went from smashing himself in the head

20 times a day and having to be physically restrained

to not doing it at all. All the OCD vanished. No more

inflexibility and extreme desire for sameness. No more

anxiety. No tantrums or melt-downs. He continues to

take the agent every two weeks and the symptoms have

not returned for 15 months so far.

 

Given the fact that my son had 13 years of intensive

therapies (including pharmacology) in an effort to

eliminate these behaviors (to no avail), the results

left me and his doctor speechless. He asked me to

present this to the entire research team at his

hospital (which I did back in November 2006) and I

will also be presenting it at the annual Autism

Research conference at Mount Sinai Medical Center in

New York coming up on October 28th.

 

We have filed for an NIH grant to conduct a double

blind, placebo controlled study of this agent in

autism.

 

In the meantime, I feel guilty not telling my story.

Maybe it's a fluke, maybe he just happened to lose all

these behaviors coincidentally after ten weeks on this

therapy. Or maybe not. I created a website to tell the

story and hopefully stimulate interest so that this

can be studied in a controlled fashion.

 

The entire story can be found at

 

www.autismtso.com

 

I am not selling anything, I have no affiliation with

the company that makes the treatment agent, and I

receive no compensation of any kind with regard to

this from anyone. All the costs associated with the

development and maintenance of the website are from my

own pocket. I'm not suggesting anyone try this. I just

think the story is too remarkable not to tell, and by

telling it to as wide an audience as possible, the

result may be that controlled studies happen sooner

rather than later.

[amy s]

This sounds promising! Thanks for posting this. I am going to look into it more when I have more time.

[Worried_Dad]

This is fascinating - thanks for posting this! I see that this therapy has shown promise for treating Crohn's disease, too... and I happen to have Crohn's. This might help both my son and me!

[Pudgeo]

Yes, I have heard alot about this! In fact my DAN Dr mentioned this to me to possibly research for my son..She has a son with autism and tried it for 3 months but her son did not show a benefit..She said it's about $1000 a month!

the site is www.ovamed.org

also she recommended a supplement called Earth Dragon by allergy research group

Sarah

 

P.S. I am soo happy that we are seeing improvement in myson! He has been on azith for 10 days and is becoming his old self again! I'm keeping my fingers crossed!

[starfish]

Hi,

 

Thanks for the report. And glad to hear your son is repsonding to zithro.

 

I know of a number of parents that have their kids on TSO and it seems that most of them have seen benefits, some amazing benefits, but I was wondering specifically if anyone with PANDAS has tried it.

 

With today's exchange rate against the US$ and using the maximum dose of 2500 ova every 2 weeks, it looks like the monthly cost would be $832 a month. Very expensive yes, but not nearly so as IVIG.

 

Beth

[Pudgeo]

I forgot to add that my Dan Dr Mielke said the majority of your immune system functions are in your gut so this is why this works..does that theory sound right? Sarah

[fuelforall]

Dr. Ken Bock informs me that a Dr Bacon is working on a low dose protocol of this that is less expensive. It is presently about $450 a dose, which is used up in 2-3 weeks. And that it should be done for six months to balance the immune system.

 

ovamed.org- see theory section

 

 

 

I still can't resist a comment.......

 

 

 

Yuck.

[fuelforall]

This is being talked about again in Dr T's blog.

It's intriguing and as I said, Dr. Bock mentioned it some months ago.

 

Thought I'd bump it up.

[Phasmid]

Dr. Lin mentioned this a couple weeks ago at our first appointment. It is an intriguing idea to say the least. However, I question whether there has been sufficient research. Worms end up in a lot of places in the human body that they shouldn't. They can tunnel, migrate, encyst, and reproduce within the human host. As a biologist, I know way too much about worms and other parasites. The thought of introducing a roundworm into the human body intentionally seems a beyond desperate measure. I personally would opt for IVIG way before whipworm. This would be a really scary thing to do in an immunocompromised person. I realize that it is being used in Chron's Disease. There is at least one report of a pediatric case where a trial of Trichuris ova was introduced into the child's gut resulting in infection:

 

From an FDA warning:

 

"There are published reports of Trichuris suis (pig whipworms) infection in humans including a report published in 2006 of a pediatric patient with Crohn's disease receiving five oral doses of T. suis ova (TSO) and subsequently becoming infected with live sexually immature worms within the ileocecal region and a sexually mature worm within the luminal space of the bowel (Arch Pathol Lab Med. Vol 130 May 2006). In addition, two earlier reports also suggest that T. suis is capable of infecting human hosts [shin et al Can J Gastroenterol 2004 Mar;18(3) and Beer Res Vet Sci 1976 Jan; 20(1)]. The adverse events associated with a T. suis infection are currently unknown; however, infestation in humans with Trichuris has been implicated in causing inflammation of the bowel [Ferrari et al Endoscopy 1993 Oct 25(8)], and possibly increasing the pathogenicity of Camplyobacter jejuni, thus increasing the severity of C. jejuni colitis if there is concomitant infection [shin et al Can J Gastroenterol 2004 Mar; 18(3)]."

[parents4eyes]

v

Edited January 27, 2011 by parents4eyes

[pathfinder]

Did any of pandas kids ever tried this protocol from this forum?

Good or bad, please share your experience.

thank you

[Kayanne]

Yes, this idea has been posted before. And I agree it is very interesting.

 

For me, personally, I consider IVIG safer than intentionally infecting yourself or child with worms. IVIG is a treatment given for many disorders - usually at lower doses than for PANDAS, and I don't think it is very risky.

 

I think they are just beginning the journey of symbiotic parasites...so I think that perhaps a few more positive clinical trials, and a some more years of getting it right would have to pass for me to even consider it.

 

...just my 2 cents -- Obviously, every family has to consider its own situation and then decide.

Edited January 26, 2011 by Kayanne

[GraceUnderPressure]

Last I heard about this, researchers are trying to pinpoint what exactly the worms are producing that is creating the beneficial effects on the immune system for some patients so that they can develop a way to give it to people without the worms. I'm praying for that alternative to be available soon!