Hosting Worms and Needing Antibiotics?

January 15, 2011 in helminth therapy, symptoms by admin | No comments

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.

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

January 11, 2011 in helminth therapy by admin | No comments

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.

Week 8: New Egg Count: 550 epg

January 9, 2011 in egg count, symptoms by admin | 4 comments

Today’s epg: 350-550 epg (I did two.)  Up from before, but not spectacularly.

Husband’s?  0

Worms haven’t matured yet?  Hopefully next week we’ll stop feeling disillusioned, sick and weary.

What To Look For in a Helminth Provider

January 2, 2011 in helminth therapy by admin | 10 comments

I get asked a lot for recommendations on who to get worms from.  There are currently 3 worms used for therapy: TSO, or trichuris suis ova, hookworms (necator americanus) and human whipworms (trichuris trichuria). Read the rest of this entry »

Week 7 Sucks Too

January 2, 2011 in symptoms by admin | 5 comments

At least the fever and night sweats are behind me.  That’s about all I can say.  New Years Eve, I had to come home early because my colon just ached, and I preceded to have about 6 bowel movements that night…what a way to ring in the near year!

Husband had total, liquid diarrhea yesterday.  So we seem to be on the same track.

I love reading publicity about helmintherapy claiming there are little to no side effects.  I know some people do get lucky.  But for many of us, the first few months are like a bad dream, with the promise of some good health on the other side.  For those of us who have gotten 3 doses of worms in the last 6 months, with all of the side effects and none of the joy, all I can is, ugh.  Worms are not fun.

My husband is tired a lot, and fatigued from exercising more then usual.  All week he’s had soft stools, now diarrhea.

Happy New Year?

It’s my daughter’s birthday today.  I will try hard not to clutch my side in pain, and see if I can actually walk downtown.  I’ll make her a cheesecake I don’t dare eat, and hope she doesn’t want to do something active today, like go rollerskating.  Because it will be yet another birthday where mom isn’t well, but sure as hell is going to try to be happy anyway.  Because I have brought a blessed teenager into the world.  And so far she is healthy and happy.  And despite this miserable disease, I’ve raised two pretty incredible girls, got to have the luxury of pregnancy and breastfeeding, holding my children, watching them grow and thrive.   How lucky I am.

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