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JUST TOOK THE WORMS!

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Crohn's Disease
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Posted 3/8/2011 6:33 PM (GMT 0)
Ok, here we go---  I just took the worms at 10:30 AM on an empty stomach.  I wish I knew when I can eat and disrupt the pig whipworm from settling in!  I am taking 2500 egg ovas from Ovamed for ulceratative colitis.  I am a whopping 89 pounds and just got out of the hospital again after 8 days.  I had 4 units of blood, a 10mg per kl Remacaide infusion, and 120mg IV prednisone buffet.  I now have a TPN line in my arm and have a 24 hour "bag of food" next to me.  If I can be cured of this, anyone could be.  I am in a severe UC flare-- it is also my first flare.  It went from minor to major in a NY minute.  I lost 30 pounds in a week and now some more weight just fell off to now an 89 pound figure.  I am a young woman and looking for a miracle.  Anyone out there like me, please join me and lets find a way out of this.  The doctors want my colon out.  I want my colon in.  I am taking supplements as well.  I will elaborate on this as we go. 

My best question of the day is who knows anyway if the TSO is best taken on an empty stomach or not?  I took it on an empty stomach.  When can I eat food?  Anybody know-  I cannot find the details of this issue anywhere-  thanks

Posted 3/8/2011 6:46 PM (GMT 0)
Good luck! I have no info - Ovamed should have provided you with that guidance, right?
Posted 3/8/2011 6:57 PM (GMT 0)
Good luck!
Please keep us informed about how things are going.
Posted 3/8/2011 7:25 PM (GMT 0)
that's just it, no approval so it is experimental and no data either.  It just says how people take the TSO solution but not specific with or without food. Anyone know, please tell me-  thanks
Posted 3/8/2011 7:37 PM (GMT 0)
First I want to say thanks for sharing your experience with us - I'd love to hear how they work for you. My docs have been wanting my colon out for years and, like you, I want it in. Sometimes I feel silly for that, but it is what it is. Worms are one thing I've wondered about and soak up any information from others who are trying it!

There's a guy who sometimes posts on here who is very familiar with them... I'll send him a note about your post. Maybe he can pop in here and give you his experience, or put you in touch with him about it.

good luck!
Posted 3/8/2011 8:12 PM (GMT 0)
that would be great, thank you.  I am keeping my colon, I know I weigh 89 pounds but still fighting.  Now I just want to eat after taking the "worms" and don't want to upset the little guys while they get settled :)  To eat or not to eat, that is the question
Posted 3/8/2011 9:13 PM (GMT 0)
NatWell, I don't know, but I can't imagine how it could hurt ingested worm ova if you were to put food down there, too. If parasites were killed that easily they would soon be out of business, as eating is what any host animal does on an ongoing basis. I hope the worms work for you and put you into remission. You are brave to try them--good for you!
Posted 3/8/2011 11:38 PM (GMT 0)
Good point, afterall they are parasites, these are just ova form for hatching, so I am unsure.  I waited about 6 hours and now I am eating light foods, broth, protein shake, etc.  I am not really that brave, just desperate.  You know you cannot see anything, they are too small for you to see them, just liquid water in a vile.  Add it to juice or soda and drink it down, follow with a glass of water.  Besides, they die off in 2 weeks if I don't want them anymore so it very very safe.  I am excited to see my results.  Like I am saying, if I can get well from the severe flare of this degree, anybody could!  thanks for your input
Posted 3/9/2011 1:09 AM (GMT 0)
NatWell, can't wait to hear more. I'm back on the pred with a surgery-happy doc and I am NOT having it. Ova, bee propolis, whatever...I'll try anything.
Posted 3/9/2011 2:06 AM (GMT 0)
Congrats to you for trying the worms!! I am wishing you all the best! I too am fighting to keep my colon! I was told by my GI that I should have it taken out due to my bleeding issues but I refused to accept that and will fight until I can't fight anymore. I have had good luck with the Bee Propolis for the bleeding and combined with my other meds, I am in a semi state of remission. I still have other crohn's symptoms but the bleeding is nearly gone, for now. Please keep us posted on your progress! Best of luck and keep on keeping on!!!!
Posted 3/9/2011 2:57 AM (GMT 0)
I just want to say good luck :) can't wait to see updates!
Posted 3/9/2011 3:25 AM (GMT 0)
Just wanted to say thanks for sharing Natwell - I'm on remicade at the moment but really interested in worm therapy.
Posted 3/9/2011 4:50 PM (GMT 0)
Thanks for sharing your story. I have always wondered how the whip worms work. Please keep us posted on your progress. I wish you well NatWell. Hope you are feeling better soon, you poor thing. xx
Posted 3/10/2011 3:36 AM (GMT 0)
Natwell, have you heard about Low Dose Naltrexone?  Some people are trying it in light of Dr. Jill Smith's work showing it can help some people with Crohn's.  I know you have UC, and I don't see in the literature that LDN has been tried for UC, but perhaps it's one more option for you. 
Posted 4/13/2011 1:47 PM (GMT 0)
NatWell, are you around? I am curious how you've been doing on the worms. Did you get the shipment from AIT?
Posted 4/13/2011 2:33 PM (GMT 0)
I'm curious how you're doing as well. NSSG-I think he got them from Ovamed, and I believe that is the one run by Dr. Weinstock, but I could be wrong. I think Ovamed does the pig whipworms.
Posted 4/13/2011 10:34 PM (GMT 0)
I think she originally got the pig whipworm from Ovamed but was in the process of getting the human whipworm from Autoimmune Therapies. I know she initially didn't want to use the human worm but I think she had limited results from the pig whipworm. She posts on the UC board and here but hasn't been around in a couple weeks. I hope she comes back with good news :)
Posted 4/13/2011 11:07 PM (GMT 0)
You are brave! I wish you MUCH success!!! Please keep us all posted on your progress.

Stef
Posted 4/14/2011 11:14 AM (GMT 0)
are thread worms similar to whip worms?
Posted 4/14/2011 3:32 PM (GMT 0)
I am not sure. I've never heard of anyone using anthing other than whipworm (human or pig) or hookworms. I've heard hookworms aren't as good for UC (they say I have UC). NatWell has UC as well I believe. I am not sure which are better for Chron's. Some people infect with both worms, whip and hook.
Posted 1/31/2012 3:10 PM (GMT 0)
Hi everyone,

So sorry for not updating! The worms are from Biomande I believe and the product is Ovamed which is pig whipworm, NOT human. My mom takes care of ordering so if you want more detail my email is public and I'd love to help :) I believe AIT sells the human version but they will not ship to the US… you place your order with Biomande and the Ovamed package will come via Fedex from Boston within 3 days or so.

When I took them several months ago I was in a pretty desperate situation. Ovamed 100% helped me to get out and stay out of the hospital and successfully get off prednisone. It truly is amazing. The problem with Ovamed is that its basically a bandaid and NOT a cure. It is also VERY expensive. Because of this I decided to quit taking Ovamed a couple months ago because I wasn't completely sure if that was what was giving me a semi state of remission. I was about 75% better. So while I was fully on Ovamed I gained all but 10lbs of my weight back and was able to eat fairly normal diet, and go back to work part-time. I was still on 6-week infusions of Remicade which I no longer take because it was not doing anything. Anyway, within about 2 months of stopping Ovamed I was back to 20+ blood BM's per day, pain, nausea, UC! I decided to order Ovamed again and use it as a tool to get off Prednisone (35mg currently) and stay out of the hospital while I try other options. I am not giving up just yet even though my wonderful supportive doctor now thinks I should seriously consider surgery. It's tough to accept and I wish he still believed in me but its okay, I still believe there is a cure.

Currently I am back on Ovamed at full strength, 2500 every 2 weeks. VERY EXPENSIVE. I am taking a lot of great supplements and I am doing a more modified version of SCD which helps a lot with symptoms. I am also researching triple anti-biotic therapy and some of the treatment methods suggested by Dr. Borody. Be aware, his treatment method is a little crazy but it is absolutely fascinating!

Anyway, for anyone who would like advice on diet or supplements or who wants more info on some of the alternative treatments I am trying, please feel free to email! I'd love to help anyone who can't get help from UC meds like me :)
Posted 1/31/2012 4:34 PM (GMT 0)
Thanks for the update.

You mentioned Dr. Borody's treatment, is that the anti-map antibiotic treatment or something else?
Posted 1/31/2012 4:57 PM (GMT 0)
Natwell, Have you considered Fecal transplant? It is very popular on the UC board! You may want to check it out. I plan on trying it when I am unresponsive to all medications. Here is the link to just one of the many threads on this subject! https://www.healingwell.com/community/default.aspx?f=38&m=1662417
Posted 1/31/2012 4:59 PM (GMT 0)
Hey NatWell!

I am sorry to hear you've been dealing with some rough times. I hope the ovamed helps to get you back to feeling well. I am with you in hoping some day there are more options for us and not wanting to have to go through surgery. Have you ever taken any antibiotics? I would definitely try FB but I don't have a great donor so it's not easy, plus, I'd much prefer to have it done with a scope, that seems like it would be much more helpful, it's not easy to find GIs who will do it during a scope.
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