Rise Up People

Right now there is an explosion of articles on helmintherapy, because one single man had the courage to try worms independently, and do enough colonoscopies to prove efficacy.

For those of you new to this blog, I’ve had Crohn’s colitis for over 20 years, tried almost all the available western (and alternative) medications, and tried hookworms (necator americanus) in December of 2007 to reverse my severe ileal-colonic Crohn’s disease.  It worked!  I had many horrible side effects the first few months (see year 1 on this blog), but I also experienced gains I never had before, like the heighest weight ever (this is a good thing), clearer skin (this was an unexpected bonus) and the ability to eat foods I hadn’t tolerated in over a decade.  (Dark chocolate, my new love.)

But…because I am such a sensitive soul, I only have used small doses at a time (15 worms being the all time high), and after about 6 months, my symptoms start coming back, and my egg counts decline.  (Yes, I’ve learned how to do egg counts with my stool.  I have a microscope, an internet connection, and very interesting conversations now with my children and friends.)  You can follow all the ups and downs of losing my infections, reinfecting, etc., in years 2 and 3.

Where am I now?  Still waiting.  I lost most of my worms by the Spring, and was having looser stools, rectal bleeding, and my blood markers of inflammation were rising by March.  Jasper of AIT had fled the country, so at first I was waiting to get new worms through him, while figuring out my legal rights on self incubation at home.  (Still unclear; are we allowed to incubate our own worms and self infect, if those worms themselves are considered a drug by the FDA and not approved, hence illegal?)  I was considering trying trichuris trichuira, like the man in the case study that’s getting all the media attention currently.  But that option changed when I had some disagreements with AIT about their contract, so I looked elsewhere for a new worm supplier.

I reinfected with 15 hookworms in June through wormtherapy.com, had pretty bad side effects, went on Prednisone, got better.  The new worms matured at week 9, I was finally improving, but since my disease is worst in my rectum and descending colon, and the hookworms have never fully resolved these symptoms, I decided to purchase TSO ( the pig whipworms) to see if they, in addition to hookworms, would work better.

They didn’t.  They caused  a severe regression, for which I had to go back on Prednisone.  I flared for weeks, the Prednisone helped, but not fully, and finally since my egg counts had gone down after the TSO disaster, I reinfected with 10 more hookworms 3 weeks ago today, so it’s too soon to know if they’re going to work.

It’s been a very up and down affair, these worms.  What I’ve learned so far, is as long as I infect before inflammation starts to rise, then I don’t suffer many side effects, and efficacy is renewed quite rapidly, within a month.  If I wait until a flare has settled, then the side effects are hard, and it takes longer to recover.  I think also, if I were working with larger numbers, then I probably wouldn’t have to infect as frequently; only 10 hookworms, and if 2 drop off for whatever reason, then you’ve lost 20%.  If I had 35 worms, a few missing worms wouldn’t make as much of a difference.

So I am hoping to build my worm burden with a minimal amount of suffering, and get back to the place I was all last year; normal blood tests, good energy, Crohn’s mostly in remission, able to eat many delicious foods and drink modest amounts of alcohol, wanting more, but good enough.

What does this mean to the new reader who’s interested in trying worms? Well, you have 3 choices.  You can order TSO through ovamed.org and they will ship the pig whipworm ova to your door.  It’s very expensive, and probably the least effective parasite, but Ovamed claims they will be covered by insurance most likely by 2015.  These are the parasites currently being used in trials in the US.  (See “how to get worms” for more information.)

There are only 3 commercial companies available, AIT, wormtherapy, and Immunologica.  AIT ships anywhere but the US and Mexico, so you have to travel to Canada to get them if you live in the US.  They have both necator americanus and trichuris trichuria, and the most patients to date trying these worms.  They have only one blood test on their resevoir donors to date.  I have not had a good experience working with Jasper over the years, but Marc has been wonderful and helpful, taking much time to help unravel any problems you might have.

Wormtherapy offers hookworms in Tijuana.  They will have trichuris trichuria soon, but haven’t worked with them yet.  Wormtherapy has blood tests going back 3 years, done twice a year and will do any other blood test you ask for, providing you pay for it.  Garin uses Dr. Llamas in Mexico, although Dr. Llamas isn’t very actively involved in the follow up.   Garin is responsive and helpful.

Ovamed, in contrast, was totally unavailable.  My multiple questions either remained unanswered, or were answered without the correct information.  I was told hookworms could lodge in the heart and cause you to die from one of the representatives from Ovamed. (Necator Americanus does travel through the heart, but only en route to the gut, never to return to the heart again.)  Of all 3 commercial companies, the one legal option was the worst customer service ever, and all I gained from the worms was a flare-up and over a $2000 loss.

There are a few small trials currently available in the US, all with t. suis.  You can find links for these trials in the “How to get Worms” section.

I think I’m already starting to feel better from these new worms; more solid stools, I’m getting a large appetite, gaining weight, I look a little “rosier”.  I’ve been nauseous on and off; and very tired.  So far, those are the only side effects, so I’m happy that this new worm dose is going well.  I’m down to 10 mg. of Prednisone, though I’m still having rectal bleeding, lots of mucus, and rectal pain, so there’s much left to heal, and I’m always afraid I’m doing too much damage in waiting.  I need to have a colonoscopy soon.

I may try trichuris trichuira in the future.  Right now I want to get back to where I was before March of this year.  I still have low magnesium and have to raise my iron levels from the miscarriage I had last year.  I took iron pills from January through June of this year, but I wonder how much that might have contributed to the inflammation as well, since they can often feed the bacteria that the immune system is fighting against.  I plan to eat liver a few times a week, but I still haven’t mustered up the courage.  (Note I have no issue with swallowing worm eggs, but liver?  Bleck!)

I highly recommend trying worms for your condition.  Side effects may be a little rough.  Efficacy might not last as long as you’d like.  Our current commercial choices leave something to be desired, but at least these companies have had the courage to offer the worms at all, otherwise we’d have no choice but to go to the jungle and get the worms ourselves.  Hopefully in the near future, there will be more competition so the prices go down and we have more commercial options.  Perhaps TSO will eventually be covered by insurance.

I encourage anyone interested in trying worms to work with your doctor in getting proof.  Each one of us could be in Scientific America right now if we had done before and after testing, and had the fortune to know a helminth immunologist to study us.  At the very least, get your doctor interested.  Ask for blood tests, MRI’s, allergy skin-prick tests.  Whatever you can do to get a documented baseline.  Then, in 3-4 months, if you are feeling better, do another one.  Show your doctor your progress.  Try to prove efficacy!

I also encourage everyone to get a microscope, learn how to do egg counts, and keep track of your infection.  If efficacy is related to worm burden or egg output, this is vital information.  If enough of us were doing this, we could learn so much!

Contact parasitologists in your area and see if they’d be willing to work with you and your doctor.  Show them the recent articles, tell them you want to experiment with worms.

And then write about it.  Start a blog.  Log onto the yahoo forum or the wiki forum, and tell others about your experience.  Use an alias if you need to.  But if it works, by all means, tell as many influencial people as you can.

I’ve been experimenting with worms for 3 years now, and though it’s encouraging to see so much media exposure on this, I’m afraid it’s just going to die back down, and like the University of Iowa trials that happened over 6 years ago, I don’t want to see any more years go by without research proving the worms’ effects.

It’s time to rise up, people.  Take your worms.  And then shout from the rooftops until these worms are proven, available, and allergies, autoimmunity, and autism become a thing of the past.

We all need you to get active, people.  Our children need you.   The time is now.

  1. Mike S’s avatar

    I’m liking these fighting words Debora!

    I know saying this is sort of like beating a dead horse, but you really need to get your hands on trichuris trichiura. Especially given that you have inflammation in your colon. Is there nothing you can do to get it from AIT?

    Also, with this next ‘go’ at helminths, are you going to try for higher numbers? The fact that you wrote that the highest you’ve gone is 15 hookworms, and that with even such small #s you still had strong results (high weight gain, acne, some remission), it sounds like maybe 35+ hookworm along with 1,000-2,0000 human whipworm ova could have the potential for strong effects.

    As always, I wish you the very best and thanks for all your hard work and careful documentation.

    Oh, and on a light note–you want to eat liver? No problem, I make it often (it’s so cheap!), just saute it up with some onions, garlic, red wine, some spices, and it’s delicious. Even better, add in some bacon to that mix and it’s to die for.

  2. admin’s avatar

    I know trichuris trichuria might really help me, but my reaction to TSO was extreme, and required 60 mg of Prednisone for 4 days just to turn the corner, after a week on 40 mg. which did nothing. It also caused my CRP to soar. 15 hookworms also caused an extreme reaction, requiring me to go on Prednisone as well. Because of my reaction to TSO, I don’t think 20 mg. of prednisone is going to do it if I try a larger dose of TT.

    My plan is to try to get stable on the hookworms alone, then perhaps add a modest TT dose in the Spring.

    I can get them from AIT, I also have several other sources now.

    I added 10 hookworms 4 weeks ago, and am having issues with magnesium deficiency again. I’d like to get this more under control before I add more worms.

    I just feel the need to go slowly, and am hoping that I can add to the hookworm population by doing 10 every 4-5 months or so. I know it may delay my healing, but going through what I have the last 6 months has been hell, and I don’t want to repeat it by overdosing and then having to terminate because of severe side effects.

  3. Mike S’s avatar

    I think you are your own best expert in this case. The magnesium symptoms are always frustrating for me as well, they have gotten better but are never gone completely. I wonder if you were on such a high dose of Vit D that it raised your calcium levels and lowered magnesium levels? My magnesium symptoms “seem” to be worse with more sun/in summertime.

    Glad to hear that you can get TT. I think it’ll help your mucosal problems and colon in general.

  4. admin’s avatar

    Yeah, I think the Vit D lowered the magnesium and raised my calcium. I’m back down to 4000 IU, but it sucks that my D levels dropped despite the supplementation.

    So even though you have only 1 normal stool a day, you still are having magnesium issues?

    I’ve switched to Jigsaw’s slow release magnesium, but no efficacy yet. I’m going to start adding slowly…up to 4 pills a day currently.

    I know TT may help me, I’m just feeling so cautious right now. Hopefully these new hookworms will get me back to a good place, and if they can keep my inflammation back to normal, hopefully when I add TT I won’t have hideous side effects.

    But I’m scared.

  5. Mike S.’s avatar

    I am still having magnesium issues, albeit much more tolerable than before, and remember my mag deficiency issues started 1 1/2 years before starting helminths, I think they were stress related. It is also a speculation of mine that perhaps having a constantly raised inflammatory level (combined with anxiety/stress, partly due to IBD) as I did for many years lowered my mag levels? Do you know anything about this? I also drank 3 glasses of milk a day (per mom’s orders) as a kid and ate very few mag rich foods, combined with ‘calcium fortified everything’ American diet of 90’s kids, so I think in some ways I ‘set myself up’ for mag deficiency.

    I’ve read a few things about Vit D and mag, I would be careful with huge doses of vit D in that sense, like I said I’ve noticed a strong connection between mag dif issues and summer when I sunbathe, and I’ve read that high Vit D can lower magnesium and raise Calcium levels.

    Are you still doing the baths? What is Jigsaw’s slow release magnesium? I’m looking to get some more oral mag, do you recommend it?

    As for TT, I get the sense from my own experience and that of others that TT hits full effect within about 2 months–which makes sense given their life cycle. I think the trick is to just go on a sustained dose of prednisone and try to get a solid dose of TT into your system. I know this is easier for me to say as someone who had only mild and transient symptoms, but it’s worth a shot. Perhaps you just have a very robust immune system and you need to take on a considerable combo TT/hookworm helminth load to re-baseline your immune response.

    Crazy about CNN and all these helminth articles. 500+ comments on CNN.com! And the Daily Show reference! Thanks for posting about that! My world is now complete as I am a massive J Stew fan.

    Final question: do you plan on doing a slow-add-in of worms or larger doses? Marc mentioned to me that after his years of experimenting with AIT patients, he thinks going for larger doses is most effective rather than drawing the process out.

    I’m rooting for ya!

  6. admin’s avatar

    Yeah, sometimes I think I’m doing this worm thing all wrong. But TSO caused such a worsening, and prednisone barely touched it, it was horrible. If I had to go on a high dose of prednisone for 2 months waiting for TT to work, then they die off within the year, would I have to go on another 2 month dose of pred each time I redosed? That seems unsustainable.

    If I tried a high dose of each worm, I think I may need hospitalization!

    10 worms used to be enough; they didn’t get me to 100%, but they got my CRP and ESR to normal; now I’m wondering if I need more worms; if the immune system requires a greater stimulation or something down the road. It’s all such an experiment.

    Yeah, I was watching that Jon Stewart show yesterday and couldn’t believe it!

    Re doses, I’ve heard from several IBD patients who only go about 6-9 months before losing their worms. Trickle therapy was a total failure, but I’m hoping that 10-15 worms every 5-6 months keeps things settled down, and replenishes my dying population without causing severe side effects.

    Is it the best way to go? Maybe not. I’ve been flaring since April, and if I can’t get these worms to work soon, it’s going to be time for something else.

    Hanging in there currently, things suck. Even 10 worms 3 years later are causing havoc. I guess for some of us, it’s a constant challenge.

  7. admin’s avatar

    And about the magnesium, yeah, I think my trying to raise my vit D levels backfired. Not only did I lower my magnesium, raise my calcium, but the D levels dropped anyway!

    I’m trying this supplement currently:
    http://www.jigsawhealth.com/supplements/magnesium

    I’ve tried every form of magnesium before this. I just don’t think oral is very absorbed, and is hard to correct this way.

    I’m still doing the baths. They help, but it’s not enough.

    I’m considering trying the shots again too, I don’t know. They didn’t really help before.

    SO sick of this magnesium deficiency. All last year, when the worms were working, I was suffering from extreme mag deficiency, so didn’t really enjoy the Crohn’s success as much. I’m better then last year, so the baths are helping. I think if I lay off the vit D (well, I’m down to 4000 IU; not going to drop it entirely.) and if I could ever stop having 4 bowel movements or more a day, I think I’ll get some relief?

  8. Mike S.’s avatar

    Hmm. It seems like a possible ‘fix’ in this case is to go on a high dose of prednisone for at least few days before dosing, and then go with the helminths. I’m rooting for TT in your case, as you know 😉

    I totally feel you on the mag deficiency. Sometimes I wonder if I’m totally off about it and it’s something else, but according to the millions of articles I’ve read on it, it just makes ‘too much sense’ to be wrong.

    Oh, and I just bought some jigsaw magnesium. It sounds promising from their website, although who knows. Seems like a good product. Thanks for the recommendation.

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