you can get helminths from this guy

If it's too expensive for you, it looks like a grass roots Do-It-Yourself is forming - google "open source helminth therapy" and the first link with the same name has a wealth of information with more being added daily. Some people have already started incubating their own hookworm to avoid paying thousands of dollars to get reinfected after their hookworms die of old age.

 

robray said...
I am thinking of giving this a shot.

Seconder, I scanned through your original post and I had a question. Did you take multiple doses? Does it cost another $2900 everytime you take another dose?

Did you try that yahoo group i told you about? http://autoimmunetherapies.com/helminthic-therapy-forums.html

of course you want to do all your research and ask a lot of questions but people in the group have the same fears as you and you may find answers by searching there. That scares me about worms too. Not sure if I am willing to take that risk.

I don't think ovamed ships to the US. I am not sure because I haven't researched it a lot. I am sorry you're not feeling well. Did you join the autoimmune therapies yahoo group? Lots of information there. I am sure people can direct you.

Did you see this?

https://www.healingwell.com/community/default.aspx?f=38&m=1511315

I've seen mixed reactions to worms. Some do great, others don't see much improvement.

I am writing about my daughter who is 18, and diagnosed 18 months ago with either Ulcerative Colitis or Crohn's. (The medical experts still can't say which it is.)

This has been a very difficult 18 months, with lengthy stays in hospital and numerous visits to the emergency room. Her life is on hold. To have this happen when you are 18 is very hard. As parents my wife and I want to do everything we can to help her get control of her illness and her life back on track.

All conventional drug treatments have failed with our daughter. The next step, according to the doctors, is colonectomy.

We decided to try treatment with TSO (Ovamed pig whipworms). Our first order arrived from Germany ten days ago. With TSO, you swallow the contents of a small vial containing tiny ova, or eggs. They grow, they do whatever they do inside you, and then they leave after a few weeks. Then you swallow another vial.

What happens next? Well, we're just starting to find out. I am hoping there are people here who don't mind sharing their experiences.

Right now, my daughter - ten days into her first vial - is in pain, and has watery diarrhea. Is this a sign of progress? Should we expect this to go away? Where can I buy "The Dummy's Guide to Getting Cured Through Swallowing TSO"? Does it exist?

Hope to hear from folks with some experience. Thanks.

Worried_Dad

Natwell, how have you been feeling?

Natwell, thank you for sharing these suggestions. We plan to use them. And if you are willing to keep the forum updated on how things are working for you with the TSO treatment, that would be great.

Worried_Dad

with fees and international fees it comes to about $1450 US dollars per 3 doses, I only use Ovamed which is TSO and not permanent but needs to be replaced every 2-3 weeks, effects will wear off in 2 weeks when stopping and takes 6 applications to really start the effects.

Looks interesting and I would definitely try this if it werent for the cost. Cant afford to pay that much when Im paying 350$ a month already for health insurance.

If you get sick to the point where you need antibiotics, you're out another $4000. Id definitely go on it if my insurance covered it but right now this treatment is aimed at the upper middle class or the wealthy. Until more people start cultivating worms and offering them at more competitive prices, I dont see many UCers able to give this a shot.

notsosicklygirl - yes, it's certainly expensive. We are still working on persuading our insurance carrier to cover some or most of the cost. Since we got nowhere before starting the treatment, we decided to order first, and establish a track record. If the results are encouraging, we plan to go back to the insurance company and state our case more assertively to them.

We took delivery of our first package of TSO vials a few weeks ago. The order consisted of ten vials, for a total outlay of Euro 3,000 including air-shipping from Germany. That translates to about US $4,380. Each vial provides pig whipworm eggs to last two to three weeks. Then you repeat. So for the money, we have 20-30 weeks of treatment (ten vials).

I never imagined spending that sort of money on a medical treatment out of my own pocket until now. And we can't sustain it in the longer term. But then I have never before had to confront an illness that has been so resistant to any other intervention. And watching my daughter, who ought to be in college now, spending her life at home instead and feeling too sick or too tied to the toilet to do anything or go anywhere - that makes my wife and me feel we need to try anything that seems to offer a chance of a better outcome.

why are you choosing to go with a very expensive pig whipworm that you need to take every 2 weeks instead of doing the much cheaper and more effective human hookworm and/or whipworm which you take once every couple of years ?
Read my story on how I achieved remission from Crohn's using helminthic therapy: www.healingwell.com/community/default.aspx?f=17&m=1914181

yes, human whipworm is considered a "disease" so you cannot ship it into the US, you have to go to Cananda or somewhere to get it.  We spoke at length with autoimmune therapies and you definately have to go to Cananda.  We cannot go to Canada, the travel would be expensive and face it, UC "customers" don't travel that well in the car when in a flare. Every time there is a problem, or if having a colonoscopy, the worm dies, then you go back to Canada, on and on from there.  I know it is expensive.  I live with my parent in order to spend all I make on Ovamed.  I am better, about 80% or more.  I am working off immune suppressant drugs and tapering prednisone by only 2.5 mg per 10-14 days.  It is slow go but I am stable--- something no professional thought possible.  Also, for dad with the sick daughter, the diarrhea is a big problem because you cannot get a hold of anything and foods just wash out when this is going on.  I had to have drugs at the following level to get it to stop, but it did stop and a good GI was critical.  Without my doctor, I would have been lost to surgery.  But now I am working away from medical and this is what happened;

My weight dropped by 37 pounds from the diarrhea and bleeding.  I had blood transfusions, I really could have died.  I went to a new hospital and got a new GI doc.  He hospitalized me and took me off all food and liquids for 9 days, some ice chips only and a TPN line in my arm with 1600 calories per day.  At the same time, I received IV prednisone in a super high amount of 360mg. for 9 days, then down on day 10 to 60mg.  I also received 10mg per KL Remacaide IV infusion.  My diet when reintroduced stayed simple for 1 month, white rice, fish, cooked zucchini, coconut milk, butter, banana, gluten free bread, mashed potatoes, backed potatoes, fully cooked green beans.  I no longer have bleeding or diarrhea.  I am on a prednisone taper and at 42.5 mg working to 0.  I had Remacaide reduced by half a week ago down to 5mg. per KL.  In two weeks we re-evaluate to reduce again.  I understand from what I have read, after getting control of things, 3 months of being stable is important to start getting off things.  Here are my supplements-

1. aloe vera (ONLY Lily of the Desert INNER FILLET, preservative free juice, organic), this does not have the diarrhea component, the others do, including George's, I use 2 oz. 3 x a day, started with 2 oz. and worked up, it heals the lining

2. Ovamed- 2500 dose every 14 days at bedtime on an empty stomach

3. fish oil- 1 pill 3 times with meals or 1 tsp. liquid

4. B12 5000mcg under tongue 1 x daily

5. 1000 mg folic acid

6. Butyrate enemas- started with 2 per day for 3 months, now down to 1 per day- these are prescription from Key Pharma in CA, they work

7. Butyrate pills- every meal, and a banana every day, butter on all foods (supply butyrate)

8. Avoiding all high sulphur foods with high thiols.

9. diet is bland, white rice is a staple- it has no value but settles things down because it has the least carbohydrate conversion of all grains.

10. Rice protein powder, nothing in it but rice, make smoothies with banana and coconut or flaxseed milk, keep it plain

11. Gluten free

12. no fruit except what is mentioned here

13. psyllium husk capsules- 2 capsules per meal, started with one capsule and worked up to 6 over about a week and ahalf.  I checked with ovamed and this level will not absorb the ovamed

14 Align once a day.  I used VSL#3 but it is just too expensive with all I have to take, Align is fine.  I also take 1 primal defence ultra at bedtime

15.  Lastely I am using a DNA-RNA spray using 3 sprays in my mouth 2 times a day, this is to balance the body and chemical reactions in my system, it also builds the intestinal wall.  I know someone with Crohn's who has settled things down with this and he can even eat nuts!  It is by Lumina Health

That's it for this point.  If you must have medical help to stop the diarrhea, get it, then you can have a chance to fight the UC.  I was also hospitalized for 8 days and put on 160mg prednisone with this method and it did nothing.  Prednisone is an evil drug, but it did do what I needed.  Now I am at 42.5 and tapering down, but much more gradually than the lousy doctors advised which almost cost me surgery.  A good GI that won't fight ovamed and nutrition is out there, I would know, I have one after having the doctors from hell for 7 months.  2 months of success thanks to the right help.  Hope this is of help being more specific

the risky one is the human whipworm, not the pig whipworm, the pig whipworm cannot live in a human, so it tries, fails, and is expelled, but in the meantime it helps repair the gut because it produces mucosa, butyrate enemas help make mucosa in the colon, Ovamed in the left side of the colon, and butyrate supplement with butter and banana make it in the small intestine and the rest of the gut not affected by butryate enemas nor ovamed.  The Remacaide was being used all along including double doses starting in November 2010.  It worked marginally, but just didn't work on me like others, I had no dramatic effects.  I think the prednisone is actually the greatest medical tool to stopping the bleeding and the diarrhea.  The Ovamed now has taken hold and I am working off Remacaide and down to 5mg per kl, 1/2 of where I was.  I have truly tried everything, SCD diet, Makers diet, on and on.  Gluten free is fine and I don't loose dramatic weight.  I do not eat high sulfur foods.  You have maybe heard that human whipworm offers the most promise for UC, but that is compared to hookworm which is used for crohn's.  whipworm is whipworm when it comes to pig or human, the difference is clinical trials, safety, sanitary harvesting, and protection from other diseases that a human whipworm can carry.  I wish it was so easy as to just get infected with a human whipworm, but I will tough it out with the pig whipworm, proven safe and proven to work in about 70% of cases.  I have spoken with all three doctors myself that were the researchers and inventors of Ovamed.  Getting it from out of the country is the only way.  At least they ship and I do not have to travel, which is too hard on me. 

I have read that if you are severe it can take 20 doses then cut back.  Whether to stay on it forever, that seems unrealistic unless the cost also becomes realistic.  I will take a wait and see position.  For now, the pig whipworm is safe so that is what I am using, and it is medical.  Also, btw, the worst mistake I made was waiting on starting ovamed as a final option when I may have done better if I had started it from the beginning.  The other big mistake was staying with a bad GI.  I did not know really that the GI was bad until it became glarringly clear when the GI fired me because I wouldn't follow her recommendation--- surgery!  So good bye to her.  I went to a Jewish Hospital in Denver.  Here you get real care!