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IF I could just stop Pooping

Monday, February 7, 2011

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?

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Worm Haitus

Monday, January 24, 2011

Since I have to go on antibiotics for at least a month or more (Cipro and Flagyl, the worst offenders)  I’m going to log off on this blog.  It’s been an interesting 3 year ride.  What I’ve learned:

  • Dose as infrequently as possible.  All of my doses *may* have led to an increased immunity to the hookworms, judging  by the increase in side effects and inability to hold on to the infection for long.
  • Don’t wait to redose until you are inflamed.  Then things get worse, with all the nasty consequences.
  • Don’t wait too long to use western medicine if the worms are failing to control your disease.
  • Don’t expect the worms to do everything.  Use them with diet, other supplements, exercise, meditation, etc.  Even if the worms allow you to eat sourdough bread and Thai food for the first time, resist.

May you have a much easier path then me.  I wish you all sweet remission, no worm side effects, and a pain free life filled with chocolate.   Goodbye.

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Misery X 2

Sunday, January 23, 2011

The last few weeks have been really hard.  Living with 3 small rectal abscesses, fevering for 10 days, night sweats, diarrhea.  I’m having major electrolyte issues; had to go into the infusion center 2 days ago for IV fluids and magnesium which helped the heart palpitations, but they started right up again yesterday, all day.  Had my husband give me an IM magnesium shot, but it didn’t help, so I don’t know what’s up.

I’ve got the intestiphage.  (Bacteriophage therapy) I started on it yesterday.   It’s imported from Georgia, and targets all of the most common intestinal bacterial infections, but just the aerobic ones.  The likelihood of the abscess being only aerobic bacteria is low, so there’s a good chance it won’t work.  I took 2 oral doses yesterday and one I put rectally.  I’ll do this for another 2 days, but if I have no improvement, then it looks like I’ll need antibiotics.

I’m advised to start IV antibioitics, then do Flagyl/Cipro for OVER A MONTH!  My GI wants me to start on Cimzia after the infection has cleared since my rectum and sigmoid are so inflamed.

The worms are going to go into hibernation; most find that egg production ceases and efficacy is lost while on antibiotics.  I haven’t even gotten efficacy, so…  I guess I’m at the end of the worm experiment for now.  Perhaps if I can get stable enough on antibiotics and Cimzia, I can try them again, maybe whipworms too since they help the colon more.

Sorry for the bad news.  This worm journey may have come to an end.  :(

UPDATE:  Had to go to the ER with a fever of 103 last night and major dehydration/ heart palpitations.  Started IV Flagyl and pipericillin.  Start oral antibiotics for at least a month.  Will probably have to try Cimzia to keep me from flaring from the antibiotics.

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Hosting Worms and Needing Antibiotics?

Saturday, January 15, 2011

So I may have developed a rectal abscess.  Oh joy.  I’ve had rectal pain that’s shooting, stabbing, very bad on and off for over a month.  Worse, I’m now getting fevers every week that last for 2-5 days.  I contacted my GI, who wants me to go directly to the colo-rectal surgeon, who wants me to do a CT scan first, then a rectal exam.  I can’t get in for a week.

Yesterday, I went to my local GI who felt around a bit with his pinky, then pointer finger, and he didn’t feel any big mass, but thought he felt a soft spot that was painful and might be an abscess.  It also might be up where he can’t reach, or in the wall of the rectum.  Only the CT scan will tell for sure.

IF I have an abscess, the usual course of treatment is antibiotics: Flagyl and possibly Cipro.  Precisely the antibiotics that either kill the worms or reduce their egg laying and efficacy for up to two months.  Some positive changes were FINALLY occurring this last week; the nausea lifted (both in my husband and me), I’ve started having some perfectly solid stools (well, they’re thinner then I like, but to actually see the pieces of stool piled up on top of each other is an IBD’ers joy.)  I’m still having loose stools mixed in, mucus, blood (My GI says my internal hemorrhoids are bleeding too).  If it weren’t for this potential rectal abscess and fever over the last few days, I thought I was getting better.

Which leads me to the antibiotic dilemma.  If I have an abscess, I can’t ignore it.  It may even need to be surgically drained.  To have to start over with reinfecting, after just getting through 6+ weeks of side effects after enduring TSO side effect hell after just getting through the 8 weeks of side effects from June’s hookworm dose…oh God, I do not want to have to go through that again so soon.

So I’ve been researching natural antibiotics that do not kill the worms.  I have a week.  Whatever I can do in the meantime may save me from disaster.

And it really makes me realize:  we need an effective substitution for antibiotics.  If we want to not harm our worms, and experience ongoing efficacy, it’s critical that we establish an antibiotic substitute that is effective and worm safe.

I’ve been doing research, and this is what I’ve come up with so far:

  • Bacteriophage therapy :  This would be ideal, but isn’t really known about here in the US.  It involves using viruses to target specific bacteria.  In non-scientific terms, the virus “eats” the bacteria until it’s gone, then the phage dies.  Wouldn’t destroy other good bacteria of the gut, like broad spectrum antibiotics.  You have to culture the bacteria to know which phage to use.  Right now,  I have only found two naturopaths who use phages, one in Portland, the other Olympia Washington.  Evergreen College is doing research on phages; I haven’t heard back from them for recommendations if I can find anyone locally to use them, if it’s even a possibility.
  • raw garlic: This study showed up to 21 grams of raw garlic a day didn’t lower egg count, but the eggs failed to mature into larvae as pre-garlic larvae, and some eggs died, but after 2 days of stopping the garlic, everything went back to normal. I clove of garlic is approximately 2 grams, so that’s a lot of garlic.  I’m currently chewing on 3 raw cloves of garlic a day.
  • Oregano Oil: this should not be taken orally, since it’s supposed to potentially kill the worms.  It’s considered very antibiotic to a wide range of pathogens.  I am applying it topically; with a rectal syringe, in 8:1 concentration with olive oil.  Combined with the raw garlic, I smell like a pizza!
  • Colloidal silver: Is it safe?  Does it work?  I don’t know, but I’m also applying this topically in the syringe.  Won’t take it orally since it may hurt the worms.
  • Propolis: supposed to be anti everything, potentially anti-helminthic.  I thought I’d try a little bit orally and see what happens.

If you have taken oral natural antibiotics whilst hosting helminths without hurting them, please let me know.  And I’ll update in a week with what the CT scan shows.  If I have to take Flagyl and start over again…oh God.  Will cross that bridge when I get to it.

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Why I Think It Is Important for Worm Donors to get Frequent Blood tests

Tuesday, January 11, 2011

There was a post on the Yahoo helmintherapy forum, in response to my query about how often a person who is acting as a “resevoir donor” (one hosting human hookworms or whipworms and giving them or selling them to another person to be infected)  should be tested for viral diseases.  I figured I’d post my response here since I don’t really enjoy being harshed upon .

First off, I was puzzled by the  “DO NOT APPROVE UNTIL YOU HAVE READ MY EMAIL” in the header.    I wonder what the email said?

Anyway, my points:

  • As a commercial company selling infectious organisms coming from human feces, it is simply good business practice to provide proof of safety to your patients.  You are charging thousands of dollars a person.  The least you could do is a blood test twice a year to prove your donors are free of hepatitis, AIDS, etc.
  • Besides the commercial advantages of providing assurance to your patients, it behooves you to do this for legal reasons.  I was also addressing the emerging DIY movement.   All it would take is one alarmist law suit claiming that  someone got hepatitis  from someone’s whipworms, for example.  If both donor and patient had a few blood tests proving that both were free of hepatitis before infection it would at least help disprove that claim.  (Not to say the worms can pass hepatitis, I am only using this as an example of something someone might try to sue over.)
  • This therapy is very “fringe” at present.  Anything we can do to protect both you and your patients from legal and medical risk is vital to the adoption of the therapy into the mainstream.   We also owe it to the medical community to at least appear like we are trying to be safe and replicating their safety precautions.  I include blood tests to be a basic form of protection.
  • I faced intensive criticism from my doctors when trying this therapy.  They wondered, “how do you know you are getting necator and not ancylostoma?  How do you know you are getting the numbers they say?  How do you know you are not getting any viral or bacterial contaminants?”   Are we expected to answer, “Well, the company can’t prove species or  number or organisms, and only has 2 blood tests 2 years apart, but I trust them.”  It’s hard enough getting our doctors to sanction a therapy that is not FDA approved, doing it without good answers to these questions makes it even harder.
  • The institutions studying hookworms test their resevoir donors.  They also have transparency in that their materials and methods are documented, and their labs are routinely inspected.    The same cannot be said of AIT or wormtherapy.
  • The fact that a mega-analysis (that you payed for) found no evidence of worms being a vector for viral pathogens doesn’t mean that no risk exists. Where are the studies that specifically looked for this?  I found this study that was critized by a  parasitologist on the incubatinghookworms forum that said it was the first study to show that parasites had the potential to act as a vector for pathogens. (different worm, different host)  And it admits that Koch’s hypothesis hasn’t been met, which means, they need to see if the worm that carries a virus or bacteria can transmit that to the next host.  Those studies would definitively prove lack of pathogenicity.  Until then, it’s safe to say “probably” they don’t act as a vector for pathogens, but no one specifically has looked for this.
  • I have never put myself forward as an academic spokesperson.  I am just one patient with Crohn’s disease who decided to try worms, had an excellent reaction, then lost the worms and efficacy.  Because Crohn’s has such terrible consequences I feel it is important to spread the word about the merits of this therapy.   I’m one of the few patients willing to use my name, be interviewed, and go in front of a group of researchers at the BTER foundation and give a talk, facing much criticism.

UPDATE: Jasper has listened to his customers, and is now going to do testing every 2 months, eliminate his infection in case he has anything else to eliminate,  then reinfect with just hookworms and whipworms.  A link to his post with all the details is here.

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