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UC victim rejected by Nottingham University trials - try Mexico?   Message List  
Reply | Forward Message #50 of 3730 |
Yes - it's damnably unfair, but you lucky folk with Crohns can join
the queue at Nottingham Univ for freebie hookworms. And I can't,
because I've got Ulcerative Colitis, which is not a disease approved
by the official hookworm trial bureaucrats (I guess they're doing
their best).

It's not unqualified good news for you though. On trial you have the
problem that the randomiser might put you on a placebo - in which case
you could be waiting hopefully with no chance of relief. Alas this is
the price of donating your living body to proper drug science.

All things considered I've decided to try Mexico.

Complication: UC can also make your blood sticky. In the last 18
months I've had 2 multiple, bi-lateral pulmonary embolisms (blood
clots which sloosh through the heart and get stuck in your lungs). So
now I'm on Warfarin for life, which makes me an increased surgical
fatality risk - apparently somewhere between 1 in 1,000 and 1 in 10,000.

If I have to I'll try the surgery anyway to get my life back, but I'm
a coward, so I'm looking to put it off for 6 months, provided I know
I'm giving the worms a fighting chance, and not wasting time with some
placebo.

My legitimate gastroenterologist knows about worm treatments and says
the science is basically sound if unproven. He can't endorse it (he'd
risk losing his licence) but he's interested that I'm trying them and
wants to know how I get on.

So, lets do it! But first, (i) do I have to come to Mexico? (i.e. is
remote self-treatment an option) (ii) are you UC friendly? (iii)
anything else?



Details : Male, 45, 90kg. Ill for 2 and a half years without a break.
Been through Asacol, Pentasa, Prednisolone, Azathioprine and
Infliximab. Only Prednisolone has been any use, and only when on an
illegally high dose. Shame really, it made me feel 110%. Current
diagnosis: severe UC, entire colon.




Fri Dec 14, 2007 5:47 pm

tustainp
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Message #50 of 3730 |
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Yes - it's damnably unfair, but you lucky folk with Crohns can join the queue at Nottingham Univ for freebie hookworms. And I can't, because I've got...
tustainp
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Dec 15, 2007
6:18 am

Hi there, We do treat UC patients. So we are off to a good start. You have a lot of questions, and so do we. I think they are probably best handled via email ...
jascallaw
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Dec 15, 2007
6:34 am
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