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LDN, 6mp, and TSO

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Ulcerative Colitis
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Posted 5/24/2010 11:16 PM (GMT 0)
Low Dose Naltrexone

LDN

Hello, Just signed up, hope I'm in the right place.
I've had UC for 15 yrs it has been quite the adventure!
I have lived on steroids, not eaten fruits or vegetables for years, lost 30 pounds at a time, been in massive pain and bleeding (dark and bright red), not to mention all the bathroom fun.

about 2 years ago I was on 150mg 6mp, 10 Asacol, and intermittent Prednisone, still dealing with the fore mentioned symptoms. Well, I heard about pig whip worms and gave them a try. The bleeding stopped, my scared colon healed (I have the pictures), and I could eat chocolate, fruit, vegetables, I'm currently taking 50mg 6mp and 5Asacol, and my auto insurance went down (just seeing if your paying attention LOL).

TSO has changed my life for the better, I am not cured by any means but my quality of life is substantially better. Now, this stuff is very expensive but worth it to me. I know now there are ways to subdue this beast, so I keep searching.

Now to get to the point I found out about LDN on line and I have been on it now for 1 week 3.0mg, I know that it clashes with 6mp but so far so good. I want to stay at this amount for a month than go to 4.5mg and start to reduce the 6mp and get off the worms(both are immuno-suppressors).

I know it is a shot in the dark, but I can go back to the worms, 6mp,and Asacol if I melt down.

If you have any insight into this or any questions, feel free to reply!


Thanks for reading,
The Seeker
Posted 3/19/2011 3:22 AM (GMT 0)
Hi Seeker,

I am on a similar path as you with the drugs and TSO. I am currently on Remicade, 6mp, and 40mg prednisone. I started my first dose of TSO a little over a week ago and I am anxious for the results. I would like to eventually get off Remicade and taper down on the 6mp and prednisone if things go well with TSO. The cost is so high but I agree with you that it is worth it if it means getting off the drugs.

I have a couple questions for you. With the TSO, how long did it take for you to see results? I am so excited that you've had such positive results. I definitely feel better but that could be from anything (remicade, 6mp, prednisone, acupuncture, SCD diet, ect. haha). Also, I am not as familiar with LDN although I've heard that the best results are achieved if you are not on an immune suppressant drug. I was hoping to get off Remicade and 6mp and move over to LDN. How do you get LDN? Do you have to go through a doctor or is it something you can get on your own?
Posted 3/19/2011 3:28 AM (GMT 0)
What is TSO? I googled it and it came up "Trans-Siberian Orchestra". A little Christmas music to cure IBD?? ;-)

Seriously though, what is it? lol.
Posted 3/19/2011 4:22 PM (GMT 0)
Read the post:
https://www.healingwell.com/community/default.aspx?f=38&m=1666318
Alternative vs Traditional therapies.

TSO is worm therapy aka Helminthic therapy.
Posted 3/19/2011 6:10 PM (GMT 0)
Read great things about Naltrexone, but most of the studies were done for CD.
Posted 3/19/2011 6:47 PM (GMT 0)
TSO is helminthic therapy or "worm" therapy.  I know it sounds bad when you first hear it but until you do research you honestly will not understand it at all.  I am not looking at human whipworm, I am using Ovamed which is pig whipworm and has to be replaced every two weeks, completely safe. 
Posted 6/22/2012 3:03 AM (GMT 0)
I am currently taking TSO again after it put me in remission for 9 years. I know it works. I just wish it wasn't do expensive and my insurance won't cover it. Looking into LDN. Can I use that with TSO?
Posted 6/22/2012 11:56 AM (GMT 0)
Who do you go to to get this therapy? And how expensive is it?
Thank you
Posted 6/22/2012 11:57 AM (GMT 0)
TheSeeker,

Welcome to the forum.

It's nice to hear a story of success with TSO.

Which form of LDN are you currently on: oral, if so which filler, or transdermal?

There have been others on this very forum who have been on the biologics, 6mp or humira, and started LDN at the same time, and because of their success with LDN, been able to wean off the biologics entirely. I can't speak to the TSO + LDN, sorry. But you could probably call Skip's Pharmacy in BOca Raton, FL and they could answer that query for you.

When traditional meds failed me, my doc gave me a choice of remicade or surgery, and I refused both. I found my own way, and through a combination of Paleo diet, various supplements, probiotics, and LDN, I am now in total remission, and am feeling great.

If you have any interest in finding out info on the protocol which has put me into remission, please go to this link: https://www.healingwell.com/community/default.aspx?f=38&m=1666318 , and look at the 11th post.

 

Please let me know how I can help.

 

 

Posted 6/22/2012 12:05 PM (GMT 0)
 

There have been 2 published studies done on LDN and CD - both by Dr. Jill Smith of Penn State.

Most doctors will not prescribe it to you, unless they "think outside the box" or are holistically minded.

My GI wouldnt give me LDN, told me it wasn't "the standard of care", what a bunch of BS.

So, I had to find a local osteopath who did prescribe it for me.

I've had a few runs with different types of LDN, some reactions to fillers, malabsorption issues, so I had to find what worked for me.

But some of these hiccups are not uncommon for IBDers and drugs in general, so it's something to be aware of.

If any of you have any questions on LDN, the how to, where to, when to - feel free to ask me or you can find my email listed in my profile.

Posted 6/22/2012 12:10 PM (GMT 0)
Rey, I bought TSO through Biomonde- Asia. It cost about $400 for 2500 eggs. Looks like the treatment recommends 10 doses at 1 dose every 2 weeks. I took it previously in a clinical study for only 12 weeks at a 3 week interval. So for me hopefully my total cost would be around $1600 plus shipping. It ships overnight and I am so surprised at how well I am feeling so quickly.
Posted 7/23/2013 2:36 PM (GMT 0)
Anna:

Would you mind emailing me at [email protected]? Interested in getting some info on your TSO exp.

Thanks
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