IF I could just stop Pooping

8 days in the hospital on IV antibiotics, IV fluids and magnesium, and I am home, thank God.  I had 3 rectal abscesses, high up in the rectum, too small to lance, but there nonetheless.  I haven’t had a rectal abscess in 23 years, the only one.  I think the inflammation caused by losing worms last Spring, unable to get them when needed, then adding 15 hookworms, taking Prednisone, then adding TSO and flaring terribly (more inflammation), having to go on Prednisone again (lowered immunity) losing some of the hookworms, then adding 10 more hookworms was just one long inflammatory phase after another.  And then the infections set in.  Wham!

My disappointment is tantamount.  I’m reading so many articles on helmintherapy that I know the science is strong behind it.  I think the practical side is still confusing.  How often should we dose?  If we dose too often, do we increase our immunity therefore not able to hold on the infection longterm or having increased side effects?  Why did I react so violently to TSO?  What would be my reaction to trichuris trichuria?  When should I try them?  Should I try them?  Should I add more hookworms first?  So many unanswered questions.

I’m on Augmentin now for the next month at least.  I got off Cipro/Flagyl because I couldn’t take the nausea from the Flagyl any longer.  I figured I got a good week on those antibiotics in the hospital, and my fever went away.  The pain is better, but now it’s transferred to hemorrhoid pain since I’m still going to the bathroom so much.  Before the antibiotics I was going about 5-8 times a day, after, 30.  I got it down to about 8-10, but now that it’s thickening up from Questran and I’m taking so much Immodium, it comes out so slowly like a lava flow, and every few hours, a little more, then a little more.  Sore!

I’m trying sulfasalazine again, the only oral mild drug that did anything for me.  When I tried LDN, I broke out in a rash all across my bottom and I got neuropathy for the first time.  We never knew if it was the sulfa, the LDN, or a combination of both, since at first we suspected the sulfa so I came off of that, but then I flared, and had to come off the LDN, then the rash went away.  It all happened within a month, so I never knew what caused it.

They kept me at the hospital an extra 2 days to see if I was allergic to it, but so far so good.  I’m up to 3 pills a day, and the old remembered symptoms of ringing in the ears, heartburn, and sunburning easily are back.  But if it helps to lower the inflammation, then I’ll deal with the minor side effects.

What’s next?  My doctors want me to try Cimzia.  They are viewing the worms as a failure. Should I go on it for a while, finally getting the rectal and sigmoid inflammation under control and making me less likely to react if I try whipworms?  The problem is, Humira made me 3 X worse, so it’s no guarantee that Cimzia is going to do anything good.  And if it does make me worse, all that’s left is the IV horrors, Tysabri or something starting with an S that they use for psoriasis, off label for Crohn’s.  Watching my friend die of cancer last year (unrelated to biologics) just makes me fear these drugs more.

I hate the Crohn’s disease choices.  I want the probiotics that studies have shown to reverse colitis in the rat model.  I’ll put links up later, but you can’t get them yet anyway. Wouldn’t that be nice?  Just take a probiotic and your CD would disappear.  No worm side effects, no losing your infection constantly.  No stress with your suppliers.

I’m gaining strength; I should have walked more in the hospital, so I’m dealing with muscles that have atrophied.  I can’t do much, but I walk around the block every day, and I’ve got crews coming to plant my garden since I can’t do it myself.  I watch a lot of TV at night, and I’ve read a few books, meditate.

Why has it come to this?  I was in remission on hookworms for a good 2 years.  It seems like many people with IBD are having trouble holding on to their hookworms, and need redosing more often then every few years.

Now people are having to fly to England to get dosed by AIT; it’s not seeming like such a good financial deal after all.  Also, if one needs redosing more frequently then every 3-5 years like  advertised, then it gets quite expensive.  I’m glad I only need to drive to Tijuana now, I could never fly to England.  And I still wish it were legal to just incubate our own.

I’m feeling stronger and less pessimistic.  I don’t know what I’m doing next, but trying to just hold steady where I’m at.  Trying not to poop every few hours, can’t leave the house because of this, but I’m too weak to go anywhere anyway, and the weather has been so balmy of late it feels like summer here.  At least the blood and mucus has almost completely gone away, and with Questran and Immodium, I’m having better stools.

I still need painkillers at night after so many trips to the toilet.  It seems like overkill to take Vicodan for hemorrhoids, but they really hurt by the end of the night, and my muscles are sore from inactivity and trying to do more then I should in the day.

At least I’m sleeping well and a lot, and dreaming of banquets, eating Thanksgiving like food.  During the day, I don’t have much appetite, and it’s a chore just to get through a meal.  I’m craving sushi with eel in it, so have indulged that several times.  Just avoiding the raw fish since everyone keeps saying I’m immunocompromised, though I resist that definition.

Oh, sigmoid colon and rectum, you’ve gone through so much.  What formula will make you better?

  1. Jasper Lawrence’s avatar

    Hi, someone brought to my attention recently that you feel mistreated by us, and that you would like a refund.

    I am happy to give you a full refund if you wish, you had never asked it of us, so I didn’t know.

    No strings, all you have to do is tell me you want it and let me know how you want to be paid. Paypal, cheque, wire transfer, whatever.

    If you want a partial refund that is fine too,

    Whatever it takes, we don’t want any of our clients to feel poorly treated.

    If you want to continue with therapy with us that is fine too, but our position remains you must fulfil your obligations to us under your contract with us.

    One final piece of advice, for you you should be taking 10 hookworms every four months and whipworm would do you a lot of good, too. You will probably do best on smaller but regular doses every six to eight months as well so that your intake equals 2,000 ova over two years.

    Good luck with your health.

    Jasper

  2. admin’s avatar

    Wow, Jasper, that is very generous. I will take you up on the offer for a full refund, and try to put the money to good use.

    Thank you as well for doing the blood tests and posting your results publicly. You are providing so many people the opportunity of health. I love reading the success stories of your patients who are in remission for the first time.

    I hope my experience is not too off putting for most, but I’ve made many mistakes and have an extreme immune response. As well, I was a difficult patient in that I questioned everything and demanded proof of safety, etc. Most people have had excellent interactions with AIT. I think I’m one of the few who had issues.

  3. admin’s avatar

    Yes, I just sent you an email, thanks!!

  4. Jasper Lawrence’s avatar

    Yes you want a refund I take it. I did not get the email.

  5. Jasper Lawrence’s avatar

    And how am I supposed to get the money to you?

  6. admin’s avatar

    I’ll send you another email with the information. I sent it to you and Marc.

  7. admin’s avatar

    Did you or Marc get my emails?

  8. Jasper Lawrence’s avatar

    Via Paypal then. It is going to take a few weeks, we are about to go abroad, back around mid March and will take care of it then.

  9. admin’s avatar

    Thank you!!!

  10. JCIN’s avatar

    Hi
    Im sure you are aware that transplants for Crohns are now being looked at the clinical trial level.

    http://clinicaltrials.gov/ct2/results?term=crohns+stem

    I have heard early results for No 2 are good.
    And it is still recruiting.
    A treatment Not to be taken lightly of course.

    Apologies if you have already looked into this option.

    Good Luck

  11. admin’s avatar

    Thanks JCIN for the links. Wow, there are a lot of transplant trials! I was going to try Prochymal before I tried hookworms in 2007. I see there is another trial at UCSF. I wonder how the first batch did?

    I’d be too afraid to do the total chemotherapy immune ablation then transplant; I don’t think my Crohn’s is severe enough for that option. But I am very curious as to the other stem cell treatments. The little I’ve read is that they were successful for some people in the trials, but the effects didn’t last. The bad thing about trials is you can’t get the drug afterwards often, and you know something may work, but have to wait the appropriate time for it to become available. That and placebos!

  12. admin’s avatar

    Well, it’s now the end of April and no refund. It was fun to think of what I’d spend the money on! Oh well.

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