worms, anyone?
 

Helminthic therapy. Deliberate infection with parasitic worms, which may modulate the immune system in ways that are beneficial to patients with autoimmune diseases. Worth a google.

Abby

Interesting. Went on their web site and it says you have to go to Tijuana Mexico for treatment. Wonder if you can just go to Mexico and drink the water? As a kid I got plenty dirty and do not think growing up in a sterile environment has anything to do with my MG. But on the other hand if it is something that works maybe why not. Think I will wait for some more research to be done first.
Al

Actually, you don't have to go to Tijuana. There is a website that sells the worms. I had an email discussion with the owner of the "worm company" several years ago, when I was desperate. He was going to give me a 10% discount as I was the first MG patient who approached him about it, and in exchange he wanted me to do video testimonials for him to present at conferences. Still, the cost was over $4,000 and I in no way was interested in doing the video, so I passed, although I think it's worth a try for SOMEONE to try it (probably someone with a lot more pocket change than I!)

Yeah, I don't think that growing up "too clean" caused my MG either. I've been looking into the helmenthic therapy idea a bit. The hypothesis is that the worms secrete a substance that mildly suppresses the immune system--to stop the immune system from attacking them! Someone explained it this way: imagine a tug-of-war game with a rope. Both sides are pulling with all their might. Then one side suddenly lets go. What happens?

The idea is that our immune systems have developed to fight off all sorts of worms and germs that we don't have to fight off any more because of modern hygiene (that's the side that let go). Now our immune systems are pulling hard on the rope, while the other side has let go.

Helminthic therapy is EXPERIMENTAL and SPECULATIVE, though there are some promising studies, and yep, you have to go to Mexico, because hookworms aren't USDA approved. And I'm sure it's risky. Then again, so are Imuran and Prednisone. If it were cheap and nearby, I might consider it, because the worms can't reproduce inside your body, and if you change your mind and decide to evict your pets, there are effective anti-parasite drugs.

Bottom line: I don't think I'll be headed to Mexico for this treatment. I would want a local doctor to monitor me (and I have a strong feeling my neuro wouldn't be willing...). I guess I'll wait until they figure out what those worms are secreting, and how to synthesize it. But, I wouldn't say that someone who tries it is crazy.

Abby

I looked at the website from the source where I'd done my investigating previously, and yep, they no longer can ship to the US. It would have been MUCH easier a few years ago.

I wouldn't worry about being monitored myself, as it's really pretty easy to kill the little critters once they've taken up residence. A can of whipped cream would do it due to the nitrous oxide propellant. However, you can't even get the squirmy wormies from the source I was emailing with unless you show evidence that your MD knows and has done preliminary blood tests.

I am active in the autism community, and a boy on a list I visit was using pig whipworms from Thailand. He was improving by leaps and bounds, but with that variety of worms, retreatment was required every 2 weeks (pig worms can't survive in humans). Financing the treatment was breaking his parents (but autmoms and dads will do ANYTHING).

I agree, Abby. Drinking worms is no more ridiculous sounding than chemically killing your immune system...and I did that!

It's too bad a drug company does not take the substance the worms excrete or a copy of it and make a therapy from that. But that would take a little thought and part of their Billions$$$. A little squeamish thinking about them little guys swimming around inside me.
Have a nice Memorial Day all and remember our fallen heroes.
Al

I have had a strict talk with my self. It was time for some tough love. I said, "Self, listen here. I've been feeding you Imuran for a year. If you don't knuckle under and show me some results, I'm going to do the worm thing. I mean it! I'll do it. You know I will. You just watch."

I'll let you know if it works.

Abby

"Self" sez: "Bawk! Bawk! Bawk! CHICKEN!!!:D"

And actually, the autism community is involved in a clinical trial with the worms right now, as is the Crohns disease community. However, I doubt big pharma would ever embrace something so simple and effective when they make so much money keeping us chronically ill with the expensive meds they sell now.

Well, to cure antibiotic resistant Clostridium Difficile, they use processed poop from patients with normal GI tracts! Yeah, it's something you have to drink. It is brilliant and works.

Keeping the immune system happy involves more than I have hand strength for today. ;) I know that worm therapy works in Crohn's and some other situations. Doing it on your own though doesn't sound too Kosher to me.

Juicing is a great way to get nutrients to the body. The immune system needs as many nutrient dense foods as you can give it. Like Chlorella.

Annie