He scheduled a capsule pill cam to quantify his hookworm status, which unfortunately got stuck in a narrow passage, and later, a colonoscopy showed lots of whipworms, in areas of ulceration, so not only were the whipworms not helping, they seemed to be harming those areas of tissue. He took a dose of albendezole and went back on Humira, which helped. Interestingly, his fruit allergies didn’t return. Months later, an iron and ferretin test showed extremely low levels, almost dangerously so, and he discovered he still had whipworms all those months. So he took a day of abendezole followed by mebendezole (with a fatty meal to aid absorption), and started over again.

We met and had breakfast together, then met Garin who drove us across the border to Dr. Llamas’ clinic. My husband received 25 hookworms, I got 10, and Herbert 37. (Just worked out to be what were in the combination of vials.) Strangely, it took double the time than normal (12 minutes instead of 6) for me to feel the itch. I don’t know what that means.

We said goodbye to Herbert and drove back to my father-in-law’s to pick up my children. My husband’s rash looked twice as bad as mine. The itch woke me up the first night and slowly faded over 2 weeks. We were exhausted and sort of sick feeling the first 2 days…

But then, the beloved “bounce” set in around the third day, and I went on to have the most happy, energetic 10 days I have had in years. I was almost giddy with positivism, I felt capable of conquering the world! Or at least the piles of undone projects laying around my property. I weeded great swaths of garden. Wheelbarrowed over 20 rounds of dirt. Moved an enormous brush pile, planted about 1/4 of a 2500 sq. ft. Patch of dirt. Most importantly, I conquered my husband’s 30 boxes of miscellaneous crap that have been sitting on the side of the house that include stuff going back to his childhood – most of it trash.

My poor husband, on the other hand, felt terrible. He was depressed, lethargic. He didn’t want to get out of bed and slept extra, totally unmotivated to work while his whirlwind of a wife transformed the yard. I felt sorry for him. He has only a walnut allwrgy, and about 30 pounds of belly fat he needs to get rid of. The last round of hookworms did nothing to help him. Most importantly, he is my walking resource in case Garin ever goes down, as I already live with the catastrophic result of losing my AIT worm supply when I needed to redose, which ultimately led to this colostomy that I despise.

So the three of us can track symptoms. It’s nice having the comradery of being innoculated on the same day. And the twin burden of having Crohn’s disease, finding a wonderful, natural treatment that makes evolutionary sense, telling the world about your remission, then regressing so terribly you kind of stop communicating. Picking up the pieces and starting over again.

I am 2 weeks in and the high has faded. In fact, I went to the ER a few nights ago because I had a bowel obstruction; that lovely area of my ilium that is scarred and narrowed by past Crohn’s damage got blocked by my reckless choices of nuts and raisins (which I’ve been eating without issue), raw carrots (if anything, will cause diarrhea), and the suspect culprit, raw red cabbage. I haven’t had a blockage in a few years. I forgot how painful they are. It was like labor, I was writhing around on the bed, unable to sleep or get around the pain. We finally went to the ER to get a little opiates and an x-ray. Luckily the fiber made it through, but now I’m sore and frightened, wondering if the area is inflamed (they didn’t check CRP) and chagrined at my dietary stupidity. I should have known better. I’ve had blockages before from raw cabbage. As did my ER doctor, who was born with a narrowed piece of bowel and had to have surgery because the cabbage got stuck. My GI told me about two of his colleagues who had obstructions from arugala and…raw cabbage. I will never eat raw cabbage again.

So here I am, round 13 I think, not including other worm species I’ve tried, hopeful but guarded. Relying on a variety of natural remedies that must work because I’ve got no good drugs left to try.

My last round of IVig is next week; I timed it for week 3 hoping it might help mitigate the hookworm side effects. After that, no one knows how to use it. Do I go on a maintenance dose? Do I just stop and wait and see if the pyoderma returns? (Down to a small bump of white scar tissue, hurrah.) Will my insurance even cover it longterm?

I eat SCDiet, take high amounts of fish oil, curcumin (hopefully the worms will tolerate this…it lowers egg counts so stresses them in some way but doesn’t seem to effect efficacy), green tea extract, l. Glutamine, wellbutrin, LDN, probiotics, hope.

I just want to be well forever, and get rid of this nuisance colostomy, but we shall see, we shall see…

So today, relucantly, I go back on antibiotics, and I guess I’ll never see what the hookworms that reside in me are going to do.

I’m going through the hoops to try Prochymal.  I have a nurse today (that I’m going to cancel) come show me how to do Cimzia.  I think I’d rather try stem cells then another biologic, since Humira only made me worse.

I went to a new naturopathic MD, Dr. Cowan in San Francisco.  He has a protocol of supplements and drugs (all of which I’ve tried), including LDN, GAPS diet, fermented turmeric, boswellia, s. boulardii, e. coli Nissle, and Biokult.  I started 3 mg. of LDN two nights ago, couldn’t sleep the first night and felt a little happier yesterday, last night was fine, no side effects.  I tried LDN in the past, got it wrongly compounded, switched to Skip’s pharmacy and seemed to get better, then I broke out in a weird rash all across my butt, it was thought I was allergic to sulfasalazine so I stopped that, made a yogurt making mistake, and flared miserably.  So I came off the LDN to go on Prednisone.  I tried it again later and it didn’t seem to help.  But I’m always open to trying things a third time, even if I’m despondent about it.

He took one look in my mouth and said, “I don’t think you’re capable of fully healing with how many amalgams you have in your mouth.”  I have 7: 3 of which are huge. I’m pretty sure they were all put in the year I got Crohn’s, so it’s always been there on the back of my mind that mercury poisining is contributing to the Crohn’s.  The interesting tidbit is I always itch when I wear anything other then gold in my ears.  If  a closed wound reacts to metals, imagine what my body does to mercury vapors coming out constantly when I breathe and chew?

It’s something I’ve been wanting to do for 13 years, but I was either nursing or pregnant, or too poor.  I thought I was going to get a refund from AIT in the middle of March, but I have no idea if this is still happening.  It will help pay the $5400 it will cost to get all of the mercury replaced with composites, but the trips to SF twice a week will add up fast, especially as we currently have no car.   I’m supposed to go up to San Francisco twice a week to start the detox process.  Whether or not it will make any difference remains to be seen, but Dr. Cowan told me to expect that it will take 3 years to fully rid myself of the mercury.  I guess I won’t be having another child.

To say I am disappointed in worm therapy and everything else is a huge understatement.  I still think the right combination of worms will help me, but how the hell do I get them into me without a severe reaction?  And why is my body now churning out anal abscesses when it never has before except the first time I was diagnosed with Crohns?  Why am I now dependant on antibiotics, and need something like Cimzia or Prochymal just to get me off of them?

I love reading success stories.  And I’m insanely jealous of those with almost no side effects.  If that were me, I would redose in a heartbeat.  But the side effects from TSO were so severe, even 60 mg. of prednisone didn’t curtail the flare for days, and later, that’s when the abscesses formed, after coming off the pred.  I feel like it’s happening now in another location, so I go back on Augmentin full dose, and pray that it doesn’t cause some superbug that I will never get rid of.  I still plan on doing fecal tranfusion after coming off the antibiotics again, since we’ve got the hang of it and it’s no big deal anymore.  And the best way I know to restore the colonic bacteria.

I have to have a CRP > 5 and a CDAI over 250 to qualify for Prochymal.  I’ll also have to do a CT scan, which I hate, since I already had 2 this year.  But it seems like a way to temporarily alter the immune response, heal tissue, etc.  My UCSF GI has one patient who was in the earlier trials who failed Humira and Tysabri, who is now in remission 2 years later and considers herself “cured”.  I’ve also read threads on healingwelll that say it only lasted 3 months, but I’m really just buying time to get through the initial mercury detoxification, and perhaps redose with worms, have the LDN have a few months under my belt, and see if the e.coli Nissle + diet can make any difference.

I’m losing weight, which I hate.  My formerly lovely 165 self is down to 150 and I look skinny.  A diet of broth and soup isn’t helping.  Dr Cowan wanted me to go back on the intro diet for GAPS for 3 days, then do stage 2 for 3-7 days, etc.  The antibiotics will probably make me nauseous again, which is a plus when you’re not really thrilled about your food.  My daughter’s birthday was yesterday, and I watched my family enjoy a pizza, flourless chocolate cake, and coconut ice cream, while I ate my 6th bowl of the same beef stew and felt the strange pain forming under my vagina in my rectum, and thought of everything I’ve tried and failed over.  I woke up in the middle of the night, since my daughter slept with me and I didn’t want to show her my misery, and cried and cried at everything that hasn’t worked.  And then went back to sleep and dreamed, forgetting my pain for a little while.

Oh well.  I carry on.  We went to the SPCA yesterday to find a puppy.  There was one that was perfect; an Australian sheppard mix who was so friendly.  When we asked to see her, we were told she was on a 24 hour hold and was going to be adopted tomorrow.  All of the other dogs were either chiuauas or golden retrievers.  We did find a possible cute other one, but were told it was extremely shy, so wouldn’t fit in with our social lifestyle, with neighborhood kids coming and going all the time.  On the way home, my daughter cried and cried and said she’s giving up on finding a dog.  I told her that we had to keep trying, and reminded her of the little cross she once picked out with my mom when I was doing really badly.  It says “Never Give Up”, and when I’m crying at my extensive failures stacking on each other and still sick, she reminds me that I should never give up and some day I will be well.

It’s hard to believe after 24 years of disease.

What’s worse is being in remission for over 2 years on a small handful of worms, then going an entire year of redosing and getting worse and worse.  If they never had worked, it would have been easier.  I’d like to think the mercury amalgams are preventing my whole healing, but then why would the worms work for a while?  Why would I have been in remission in the past on diet alone?   I don’t have severe Crohn’s, I have moderately severe Crohns (as if that’s any better), but I thought if I just kept some worms in me, ate the right diet, and did a fecal tranfusion,  exercised, meditated, walked barefoot in my garden, etc, that I could approach some semblance of wellness.

So it’s back on the antibiotics, searching for “what’s next’.  In 2007, I had the choice of Procymal or worms.  I chose worms.  Now I’m having to choose Prochymal.  Oh well.

Never give up.

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.

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.

In the US, the only worm that is “legal” (because there are active trials currently so it has IND status) is TSO; trichuris suis ova, or the pig whipworm.  You can order this worm and get it shipped to your door.  You have to drink the ova every 2 weeks for efficacy, and currently each dose is about $400.

You can order it without a doctor’s note from ovamed.org

There is really no guidance or follow up.  If you ask questions, in my experience, you may either get no answer at all, or a lame one from Thailand.  Occasionally it has been blocked importation by the FDA, but as long as there are active trials, I think you should be able to get it.  Ovamed claims they will be covered by insurance by 2015.  I have no idea of the success rate or long term efficacy; the forum that used to exist was long ago disbanded.  There’s a new forum at: http://ovamed.org/viewforum.php?f=2

Current trials in the US are for MS, peanut allergy, and adult autism.

TSO is supposedly the safest worm, and the one with the least side effects because it is not supposed to colonize the human. I tried 3 doses this last Fall, and though the first dose caused nothing but a little stomach ache, the next doses caused severe diarrhea, pain and regression.  Perhaps hosting human hookworms at the time influenced this?  It was horrible.

Hookworms have been studied at the University of Nottingham and in Australia for allergies, asthma, celiac disease, Crohn’s disease, and eventually there will be a MS study. Most trials used 10 hookworms and didn’t have great efficacy, and they only studied people for 3 months, which is usually the time when side effects start leveling off and efficacy begins.  If they had studied the patients for longer, there might have been better success?  The celiac trial used 15 worms and showed some success, the MS Nottingham trial will use 25 and test for a year, so that should be the most interesting.

There are currently no active trials using human hookworms, so your only choice is to wait, or purchase them through one of the 3 commercial companies.

If you live in Spain, there is a company selling hookworms, but I don’t know if they’re still in business or anything about them.

So then you have 2 choices; wormtherapy.com or autoimmunetherapies.com

Both sell necator americanus and AIT has trichuris trichuria (human whipworms.) Both will not sell the worms within the US.  Garin Aglietti works out of Tijuana, and uses a Mexican doctor, Dr. Llamas to oversee the therapy. Jasper Lawrence ships from England, and is partnered with Marc Dellerba, who is a clinical scientist.  Garin and Jasper were partners in the early days of AIT.  Fascinating stories about how  they got their worms (somehow you only hear about Jasper’s Camaroon story, but that would be ancylostoma, the african hookworms. )  AIT will ship the worms anywhere but the US.   So for dosing or redosing within the US, one needs to travel to Canada or Mexico.

What are you getting from these companies besides worms?  Both supply ongoing customer support to help you get through the first few months’ of side effects.  Both have experience now in dealing with multiple patients and diverse diseases.  Garin has kept thorough records of his patients, Jasper had to get rid of everything pre FDA raid, so though AIT has more patients, they don’t have records of these patients’ pre 2009, I believe.  I’m sure now they are keeping thorough records.

Neither has proof that you are getting necator americanus and not ancylostoma   duoadanale (the hookworm that you really don’t want, because it sucks way more blood, can live in the body in a dormant state, and may travel through the breastmilk.) This is the hookworm that Jasper Lawrence first picked up in Camaroon by walking barefoot through latrines, but I’m assuming he killed off this infection before infecting himself with necator and incubating future generations.  The new source of  worms for both companies come from a country rife with necator and no ancylostoma, so you basically have to trust that the provider procured the worms from the area they tell you.  You can only tell the difference between worms by looking at the mouths of the adults, so one would have to terminate their infection, sieve the feces, and carefully examine the teeth through a microscope to identify necator americanus.

Hopefully both companies will eventually find an independent source to identify the species being sold to us.

Neither company can prove the precise number of worms you are buying, since they are microscopic.  But I did ask to see a worm dose in Tijuana when I was there once, and Garin showed me 5 worms under a bad microscope.   I could clearly identify 5 organisms, but they could have been anything.  I was never allowed to see AIT’s lab.  However, with hookworms, you can clearly feel the worms burrowing through your skin, so at least you know you are getting something.  And when your eosiniphils rise and your side effects begin, you can be pretty sure you have hookworms.  Whipworms you drink the ova, but if you had a microscope, you could examine your dose before drinking and view the tell-tale shape of the whipworm ova.

Enough of us have identified hookworm eggs under our own microscopes and some of us have incubated the worms to their L3 stage, so we know that we have hookworms from these companies.  A patient who got both hookworms and whipworms from AIT just recently had a colonoscopy and  the doctor pulled a whipworm to identify, so we should have independent confirmation of at least that worm species soon.

Although these nematodes aren’t thought to pass on viral pathogens, (except for this study) it is still prudent to check the donor for the viral nasties, and here is where the companies differ.  Wormtherapy has quarterly blood tests going back 3 years now, so when you ask you will be shown multiple tests that demonstrate lack of all the hepatitis, AIDS, herpes, etc.

AIT has one single blood test done in 2008 in Mexico. <Update:  AIT has done a second test and now promises to test every 2 months>

Both companies promise reinfection for 3 years if you lose your worms or need a “top up” dose.   However, I was denied worms from AIT this spring because they didn’t feel I complied with their contract in providing a clear written report on my effects.  I was told later that they would give me worms again, but I would be extremely restricted as to what I’d be allowed to write on this blog, so I went with wormtherapy.   I’m pretty sure I’m the only customer who’s been denied worms, but I’m also a difficult client.  Most people have excellent things to say about AIT.

I’ve been heavily criticized by one of the moderators of the helminth yahoo board for posting any thing negative on worm therapy.  Because the therapy is so precarious and under the laws of the FDA, any post that criticizes the providers on the yahoo board is blocked.  I disagree.  I actually think it would be better for the therapy if people could voice their criticisms and have them addressed.

I feel that an honest discussion of the therapy and the providers is needed.  It is unfortunate that we don’t have multiple providers to buy from.  Like any free market, we’d have places to write about good or bad customer service, safety, efficacy, etc.

I’d really like to hear other patients’ perspectives on this.  Now that helminth therapy is getting in the news, I’m hoping there are more intelligent, honest discussions about both its benefits and drawbacks.  I’m finding that there is not enough information on the side effects, and long term efficacy.  Many people are afraid of voicing anything negative for fear of losing their supply, but I think most people have are getting great service.

What would you like to see more discussion of?  What has been your experience with the worm providers?   Do you think we should be able to discuss openly our criticisms of our providers and the therapy, or is it too precarious, should we keep silent until it’s readily available to all people?

Am I harming the therapy by being honest or harsh about my experiences?

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.

http://www.livescience.com/health/worm-therapy-stimulates-gut-mucus-101201.html

http://www.baltimoresun.com/health/la-heb-worm-healing-20101201,0,2645483.story

http://discussions.latimes.com/20/lanews/la-heb-worm-healing-20101201/10

From Scientific American: http://www.scientificamerican.com/article.cfm?id=helminthic-therapy-mucus

For the Good of the Gut: Can Parasitic Worms Treat Autoimmune Diseases?

Helminths could suppress immune disorders by promoting healthy mucus production in the intestine

By Ferris Jabr December 1, 2010

In 2007, parasite immunologist P’ng Loke sat down for lunch at a University of California, San Francisco, cafeteria with an inquisitive man who had called him earlier that week. Their chosen topic of conversation would deprive many people of an appetite, but the scientist and his guest shared an intellectual hunger for a stomach-churning subject: gut worms—specifically, tiny worm-like parasitic organisms called helminths that live nestled in the gastrointestinal tracts of their hosts.

Loke was fully prepared to answer the man’s questions about the parasites he knew so well, but what he did not realize was that his companion had more than just questions—he had worms burrowed in his intestinal walls, worms he had deliberately swallowed. Together, Loke and the worm-wrangler embarked on a research project, the results of which appear today in the December 2010 issue of Science Translational Medicine.

The 35-year-old man who had lunch with Loke was quite healthy in 2007. But only a few years earlier he was in the throes of an inflammatory bowel disease known as ulcerative colitis. An autoimmune disease, ulcerative colitis inflames the colon and leaves it rife with open sores; patients experience intense abdominal pain, vomiting, diarrhea, rectal bleeding and weight loss. While searching for treatments, the man discovered the work of Joel Weinstock, a gastroenterologist, parasitologist and immunologist at Tufts University who has pioneered research on helminthic therapy—treating autoimmune diseases by deliberately infesting patients with parasitic worms, such as whipworm and hookworm.

The results of Loke’s new case study—the most recent of only five studies that investigate helminthic therapy in people instead of animals—suggest that helminths may ease the symptoms of autoimmune diseases by increasing mucus production.

“It’s a unique study—there’s nothing like it before,” says Weinstock, who was not involved in the new research. “In this case they had a very unique patient—one who was self-infecting with helminths.” Clinical trials on helminthic therapy are particularly difficult to arrange because helminths are live pathogens and have not been officially approved as therapeutic agents by any governmental agency, although the U.S. Food and Drug Administration has granted pig whipworm (Trichuris suis) the status of Investigational New Drug. In contrast to human whipworm (Trichuris trichiura), the porcine variety cannot survive inside the human gut for very long.

“The researchers noticed a specific pattern of behavior, cycling between remission and active disease depending on when the patient infected himself with helminths,” Weinstock adds. “This is not a double-blind study, but the pattern is highly suggestive that the worms helped this patient. The major point of this paper is the potential mechanism—mucus production—which has not been looked at properly before.”

The Might of Mucus

In the new study, Loke—who is now with New York University—analyzed the man’s medical records prior to 2007 and personally tracked the man’s health from 2007 onwards. In 2004 the man swallowed a vial of salty liquid brimming with 500 human whipworm eggs, which he obtained from a parasitologist in Thailand. Three months later, he slurped down another 1,000 eggs. The larvae hatched and matured within his gastrointestinal tract, burying their heads in the intestinal wall. By mid-2005, he was virtually symptom free and required no medical treatment for his colitis, except occasional anti-inflammatory drugs to suppress flare-ups. The nearly complete dismissal of colitis symptoms is especially striking because human whipworm infection can itself cause digestive problems, including diarrhea, abdominal pain, nausea, vomiting and, in extreme cases, rectal prolapse. Severe infections can also cause anemia and stunt the growth of children.

In 2008, the number of whipworm eggs in the man’s stool began to dwindle, dropping from more than 15,000 per gram to fewer than 7,000 per gram. As the eggs disappeared, the symptoms of colitis returned. So the man infected himself with another 2,000 whipworm eggs and, a few months later, his symptoms practically vanished once again. Repeated colonoscopies revealed that wherever worms colonized his colon, the symptoms of colitis were significantly reduced or nonexistent.

During the 2008 relapse, the researchers found that immune cells in tissues with active colitis produced large quantities of an inflammatory signaling molecule named interluekin-17 (IL-17), but very little IL-22, the latter of which has been linked to wound healing and mucus production. When worms recolonized the colon, however, immune cells began manufacturing much more IL-22. Blood profiling and genetic analysis further revealed that tissues in which helminths thrived increased carbohydrate metabolism—a prerequisite for mucus production.

“Ulcerative colitis is often associated with decreased mucus production and the worms seem to somehow restore mucus production, possibly by inducing a population of immune cells that make IL-22,” Loke says. “It’s possible the mucus serves as a defensive barrier between bacteria and the gut that prevents bacteria from causing inflammation and crossing over into other tissues.” Autoimmune diseases generally occur when the immune system overreacts to benign—and even beneficial—organisms living within the body. In the case of colitis, researchers suspect the reaction is directed toward the bacteria in the gut. Loke thinks that the human body may boost mucus production when it detects helminths as a defense against the parasites; for a patient with ulcerative colitis, the extra mucus may also help calm an excessively aggressive immune system.

“We saw an association with remission and immune cells that make IL-22, but we don’t know for sure if these immune cells are actually induced by worms,” Loke says. “You can’t tell with a sample size of one,” which is especially susceptible to the placebo effect. Still, Loke adds, “the results seems quite compelling, especially when you consider the background—all the animal studies and clinical trials that show worms can suppress colitis and other autoimmune disorders.”

Mounting Evidence

In fact, in numerous animal studies, helminth infestation has protected rodents against colitis, asthma, rheumatoid arthritis, food allergies and type 1 diabetes.

Researchers have conducted few human studies, but most have shown promise. In a clinical trial published in 2005 in the journal Gut, Weinstock asked 29 participants with Crohn’s disease (another autoimmune inflammatory bowel condition) to ingest 2,500 pig whipworm eggs every three weeks for six months. Twenty-three patients (79.3 percent) improved significantly, and 21 (72.4 percent) experienced remission. Both the researchers and participants, however, knew exactly what treatment they were receiving, which makes excluding a placebo effect impossible.

In a controlled clinical trial published in 2005 in Gastroenterology, Weinstock and his colleagues gave 52 participants with colitis 2,500 pig whipworm eggs or a placebo every two weeks for three months. Thirteen of the 29 patients (44.8 percent) who received whipworm eggs improved, compared with only four of the 23 participants (17.4 percent) who received the placebo.

Weinstock and his collaborators point to these trials as experimental evidence that fits a global pattern: immune disorders are much rarer in less developed countries where helminthic infestation is widespread than in industrialized countries where much smaller populations host helminths. The “old friends hypothesis” proposes that the human immune system cannot learn to regulate itself without exposure to common pathogens like helminths that have coevolved with people and that modern hygienic practices deprive people of this necessary exposure, possibly explaining the relatively higher and more recent prevalence of immune diseases in industrialized countries like the U.S.

Loke plans to continue researching helminthic therapy in people and in monkeys. “We are talking about doing a small trial of, say, 10 people and basically doing colonoscopies on them before and after giving them pig whipworm,” he says. Loke also mentions that colitis plagues many juvenile monkeys in primate research centers and that he has received a pilot grant to treat diseased monkeys with human whipworm, an as-yet-unpublished experiment that is already returning promising results.

“When I first sat down to lunch with the guy who called me and he started telling me his story, I was really quite skeptical,” Loke recalls. “But now I am completely changing my mind about helminthic therapy.”

I approached the registration and soon became known as the “hookworm woman!”

I met Dr. Sherman, and he informed me that he was going to change the schedule around a bit.  Because Dr. Pritchard wasn’t there to introduce the science and the whole helmitherapy concept, he moved the documentary “Parasites: A User’s Guide” first, followed by my talk afterwards, then a Q and A session.  I was only shaking minorly.

Biomonde sponsored the event, so I got a nice complementary bag.  I went up to the Biomonde crew and introduced myself, saying I had just purchased TSO from his company and had a terrible reaction.  After some confused interchange, he said that his Biomonde is different then the Ovamed Biomonde, and he is only involved in maggot therapy.

I loved being at a conference of leech, maggot, worm, fish, and bee therapists.  I have to say here that I have never met a more interesting group of people in one location.  Almost everyone I approached was kind, intelligent, and was working with a biotherapy that had been used for years, even centuries, but the general theme of the evening was trying to get FDA approval and medical acceptance for these therapies.  There was quite a crew of apitherapists, and I always love beekeepers.  I quickly became attached to what the other apitherapists described as “the man,” an older gentlemen who’s been keeping bees for over 50 years.  I’ll talk more about the bee people later.

Dr. Sherman was a very kind man with much humor, and I am still so appreciative that he allowed me to come and be a speaker at this event. Thursday started with a history of maggot therapy, and the story of Dr. William Baer who was a well-respected medical doctor in the 1930′s who discovered accidentally what healing properties maggots had for wounds.  He went on to cultivate the flies and designed little cages to put over the wounds, and methods to incubate the maggots cleanly so that they didn’t transfer bacteria from their intestinal tracks to the wound.  Fascinating man.

The next talk was on bacteriophage therapy, and this is something I knew nothing about and want to learn more.  Phages are basically viruses that attack bacteria.  They are more common then bacteria in the world, and have been used before antibiotics to attack and destroy bacteria.  When antibiotics were developed, research into phages plummeted in this country, but in Georgia and the Soviet Union, they continued to develop phages that targeted specific bacteria. As the development of antibiotics fell, the list of phages grew.  There are now phages that target bacteria that are antibiotic resistant, and they have unique phages for many bacteria.  There were photos of staph infections before and after (these are the kind of photos that you can’t help but look, but you WANT to turn away.)  They are now experimenting with phages for cystic fibrosis, staph, klebsiella, the list is so long, it makes you wonder why the hell they are not using phages in this country.  There are virtually no side effects, and when the bacterial population is gone, the phages are gone as well.  (This is a horrifyingly simple explanation of bacteriophage therapy, I’ll try to post reputable links when I have time to research it more.)

A periodontist from Georgia showed how they are using phages for periodontal disease.  The before and after pictures were impressive.   I asked Dr Elizabeth Kutter if phages could be used for IBD, since we know that our gut flora is often out of balance, and she said they use phages for infant diarrhea in Georgia, but of course research specifically for IBD is lacking.

This might be a nice compliment to helmitherapy, since the phages do not act like antibiotics; they only target one specific bacteria, and leave the rest behind, and they take bacterial samples beforehand so they can know what bacteria to target, what phages to use.  I’m going to look into it further, since I feel my colonic bacteria are so out of balance, and it’s hard to control it with diet and probiotics alone.  (and worms)

Next we had a little break, then Sharon Shattuck’s documentary.  After the very scientifically heavy presentations, it was a lighthearted change.  The lighting was suboptimal, but the audience reaction *seemed* to be positive.  There was much murmering in the audience when it was said that the worms were considered a drug.  No applause afterwards, just a hush.

Then it was my turn.

Dr. Sherman introduced me as a patient of helmitherapy, and a reminder to the researchers why they were doing what they were.  I went up and gave my talk.  I had good audience reaction; lots of sensitivity over the horrors of Crohn’s.  When I went through my medical options (Humira, methotrexate), there were murmurs.  The before and after CRP and ESR got some reactions, and most of my jokes were laughed at.  I felt it went very well, I delivered it without messing up, I added some off-the cuff humor, and finally wrapped it up with my urgent questions.  I was feeling victorious.

Until the Q & A began.

Dr. Sherman put my slide with my questions back up, (#46) and invited the audience to help answer them.  A doctor stood up immediately and started a long comment that made my heart fall as he went on.  His first point was my blood tests were meaningless.  Without colonoscopy tissue samples, my case was anectodal (which I said in my talk), and stories like mine and the video hurt the science.  He, as a doctor, could not use a therapy that lacked the case studies, or the proper FDA approved studies that proved efficacy.  Even if they knew it worked (he’s a bee venom therapist who’s been trying to work with the FDA for over 25 years).

It was the very thing I feared standing up in front of a group of researchers and doctors, and knowing that I hadn’t done a colonoscopy when times were good…that I was only an anecdotal case.  As he went on, you could sense a change in the audience, and I was feeling like everything I went up there for had failed.

He sat down finally, and another doctor popped up (later found out he was a pain management specialist and he gave an excellent talk on the merits of bee venom therapy for pain), and said that I didn’t have to prove anything, and reminded me that I only needed to take care of myself.  People applauded.

Then one of the phage researchers from Georgia very kindly asked me why I didn’t do the damn colonoscopy, and I answered that at the time I was trying to see how long my worms would last, I didn’t know what the prep would do to the worms, and I traditionally have violent reactions to the prep, resulting in a CD flare-up. He asked if there was proof of the hygiene hypothesis, and I responded that I wished Dr. Pritchard were here, but yes, there was a lot of proof, one study in Africa showed that after deworming, the schoolchildren developed dust mite allergies for the first time.

Then an old, distinguished man with a British accent stood up and said he had worked as a doctor in Nairobi many, many years ago, and they had over 25,000 patients.  During that time, there was not one single case of IBD.  Later, he lived and worked in Rwanda, and they were switching to a Western lifestyle. Over the years, the cases of appendicitis became their #1 operation, whereas before, there had been few to none.  So in his experience, he had seen the hygiene hypothesis firsthand, and I felt like applauding.

One MD asked if the worms caused any havoc, couldn’t one just take an anti-helmithic, making this therapy very safe in that the worms could be killed off in a matter of days?  I answered that yes, just a 2 day course of mebendezole should kill the worms.

Another woman suggested I try contacting the various gastroenterology boards, but I answered that the fellow who worked with Dr. Terdiman at UCSF, when I had my remarkable remission the first 4 months after trying hookworms, tried to write an article for the CCFA, but it was rejected.  But yes, I thought that the various auto-immune associations perhaps could come together and help fund more studies since the worms could work for many autoimmune diseases.  Another person said I was very, very brave to come up in front of this audience and speak, and they were very appreciative of my efforts.

And that was the end of our time, so we broke.

The first man who argued I was hurting the science came up afterwards and presented a long theory about chronic illness, involving stress, the mind, exercise, and disease.  Some good suggestions.

The people who walked up to me after him overwhelmingly thanked me for my talk.  (Of course, I didn’t hear from the ones who disagreed. )  Most were interested in helmitherapy and wanted to learn more.  One MD has 2 MS patients who were interested in trying this, and had written down the MS study that I had shown.  We talked about side effects, about the two severe CD patients I knew who were hospitalized for their reaction to 20 and 25 hookworms.  (Earlier the pain management specialist jokingly told me that he hospitalizes his patients all the time, that even his FDA approved therapies can be dangerous, the worms are like any drug in that respect.)

There were several people who had someone close to them suffering from CD, and wanted to know if they could contact me for support.  Another wanted to contact my husband for support, for advice to the spouse who has to live with a sick loved one.  One CD woman was told she shouldn’t have children because she’s had 5 bowel surgeries, and could she talk to me?  It just reminds me how my stubborness has gotten me far.  (I was told when I was 23 to go on methotrexate and I shouldn’t have children.  I went on SCD instead and had two wonderful girls when I was 25 and 29, and though it’s been really hard, and it’s no fun to have bloody diarrhea when you are nursing an infant, I feel so blessed that I’ve been able to conceive and raise a family with this wretched disease.)

And then I got swarmed by the bee people.

Bee venom therapy does much the same T cell switch as helmitherapy, it turns out.  And many of the apitherapists had used propolis (what the bees use to line their hives to keep out viruses, fungi, bacteria) to great effect for CD.  I heard about patients on 10 medications reduce their medicines to none after using propolis and bee venom therapy.  They felt that my worm experience had been too hard, and they knew what the bees could do.   Fascinating, lively people.  I have heard somewhere that bee keepers live long lives, and hearing the apitherapy lectures on Saturday now suggests why; bee stings, propolis, pollen, all have anti-aging properties, immune modulating modalities, high nutrition, antibiotic, antifungal, antiviral…I’m inspired to use honey for certain wounds, the before and after photos were so impressive.  I have a hive in the backyard, though the bees left months ago, but in the spring, I will be getting several hives and hopefully in another 5-10 years I’ll be joining the bee people in a little bit of knowledge.

Dr. Sherman felt that it was a very important thing I did; not to feel discouraged by the doctor in the Q and A, but that here we planted a seed.  And he reminded me about his work with maggots, (and he’s been at this for over 25 years), how he had to design a special trial that met with the FDA guidelines, but couldn’t be double blind.  (Because, what’s a maggot placebo?)  In other words, we must carry on.

The dinner ended, I thanked him for this opportunity, and we went back to my sister’s house, only to get up early and begin day 2 of the worm weekend.

Friday, my husband and I drove to Tijuana and I got infected with 10 more hookworms, and my darling husband got 25, through wormtherapy.  There is nothing seriously wrong with Karsten, except that he has high cholesterol, and is 30 pounds overweight.  Metabolic syndrome may respond to hookworm therapy.  This also gives all of us experimenting with hookworms  a “normal” baseline, since how many people are doing this who aren’t desperate or suffering from some disease?  You can be assured that we will be doing egg counts on my husband, and I might create a separate “husband’s corner” on this blog, so people can follow his progress.  I think it’s almost more powerful that he would be willing to do this.  One of my husband’s friends thought it was the greatest act of love that he had ever encountered, and we joke about what my poor husband was getting into marrying me….in sickness and in health, in hookworm infection ’til us part.  But I digress.

I got to hang out with Dr. Llamas for a few hours.  I love Dr. Llamas.  He massages you, laughs with you, is totally encouraging.  “You worry too much.  Let me worry for you,” he says, and though I try to follow his advice, I don’t succeed usually, especially as I’ve adopted this role as “worm activist”.  It’s so nice to have a warmhearted doctor to comfort you when needed.

Karsten got his lecture on fish oil, diet, and exercise, how to prepare beans (you want them whole, not mashed and broken up like Karsten’s been doing; the increased fiber helps attach to the cholesterol), and Garin gave Karsten a huge amount of exercise advice. He recommended an app for his new phone that measures caloric intake, how much you expend with walking (it includes stride length).  Karsten’s been walking up hills for an hour each morning since, and is much inspired by his little phone application.  Though it won’t be solely the worms that help, I still think the act of getting infected and having a coach is what he’s needed to make the changes for his health.  We’re inspired.

We drove to TJ and back, got our worms, and finally made it through traffic to return to my sister’s house by 9 PM.  We put our beautiful girls to bed (they had been taken to Universal Studios that day by my mother, so were full of their own happiness), and day 2 was done.

Absolutely no “hookworm high”, darn it.  I feel nothing but an itch.

I woke up the next day early, and reading the program realized that the apitherapy lectures were that morning, so Karsten and I went back to the conference.  I was a little late, but got to hear most of the apitherapist lectures, including the one by Dr. Kim, who had criticized my lack of science.  Listening to what he’s been through over the last 30 years makes me realize where he’s coming from.  He’s a Korean doctor who has a history in acupuncture, who’s been using bee venom therapy for years on acupuncture points.  However, he’s also been doing all of the studies that the FDA requires; the animal studies, proving venom is safe with the most common 25 prescribed drugs in the US, the list is so long what he’s had to go through, and finally the double blind studies are being done.  The merits of bee venom are vast, and he showed many horrific slides of various diseases, from RA to rashes, where the bee venom therapy helped.  The most interesting thing for me was that they use bee venom on acupuncture points; depending on whether you are treating MS or RA or pain, they use different points to bring it to the nerves, the spine, etc.

The older gentlemen who had seen the hygiene hypothesis in action lectured on the history and many uses of apitherapy, including some impressive properties of bee pollen and propolis.  He described how they can minimize pain with the bee venom therapy, by using one bee sack but stinging many locations with it.  If helmitherapy stops working, I think I may move on to the bees…

I decided not to attend the workshops on Sunday, since all the helmitherapy workshop was going to be was another viewing of the film: Parasites: A User’s Guide.  I also had made contact with all of the people that mattered to me, and I was becoming exhausted from my travels, so just wanted to get home.

I thanked Dr. Sherman again, I got phone numbers for the bee people and the phage therapy MD’s, and left.

I would say it was a success.  Seeds were planted, much information was exchanged.  I met so many interesting people.  Like I mentioned in the beginning, this was a very colorful collection of people, all working with living organisms, all having to fight for FDA approval, medical acceptance, all knowing what merits each of their therapies offer, and trying to get their therapies the attention they deserved.

I would have to pick bacteriophage therapy as the most exciting of the group.  These phages treat cholera, staph, cystic fibrosis, the lists of bacterial infections are so long, it makes you wonder why the hell this is not being more researched in this country with all of the c. difficile cases rising, the antibiotic resistant staph infections.

I did not attend the ichthyotherapy workshop (using little fish to eat psoriasis), nor the leech and maggot lectures, nor the dogs who can sniff out cancer and diabetes.  (Fascinating, but it must be hard to be sniffed.)

I think I did a good job of providing a voice to the patient’s side.  I tried to be conservative looking, well spoken, intelligent, cautious.  I think more than anything people appreciated a patient going up before a very prestigious group of researchers, presenting a 30+ minute lecture with slides, and daring to take the criticism from the researchers.  I hope that I represented all of the patients adequately, and helped helmitherapy move forward a bit in people’s attention.  I wish more helmitherapy patients had attended, it’s hard being one of the few who’s active and willing to be interviewed and step out of my comfort zone.  But I think helmintherapy has so much merit, we’re just in the early days.  (But c’mon helminth users out there, stand next to me next time!)

Hopefully my presence helped a bit.  I just wish Dr. Pritchard were there.

They took videos, but I’m uncertain if they will be available publicly, or only to BTER members.  But if the latter, it’s very inexpensive to become a member, and I encourage all of you helmintherapy users to do so.  We need all the legitimacy and help we can get.

I left the conference to an early Thanksgiving with my family, and we celebrated my worm-filled weekend with cranberry sauce and pumpkin pie (crustless, made with honey and coconut milk; I’m back on SCD).

All in all, a fruitful weekend, very full. Thank God I had the health to do all of this.  We’ll see what the new worms bring me.   I think it was a success.

http://openetherpad.org/deborawade-bter-slides

My talk:  (numbers in parentheses are the slides)
(1)My name is Debora Wade and I have had Crohn’s disease for over 20 years.  Since December of 2007 I have been experimenting with helmitherapy.  In other words, (2)I have approximately 15 of these hookworms living in my small intestine as I speak.

(3)Crohn’s disease, is an auto-immune disorder that primarily effects the digestive track.    Right now 1.5 million people in the United States alone suffer from Inflammatory Bowel Disease which includes ulcerative colitis.  It is one of the many autoimmune diseases that is becoming an epidemic.  According to the American Autoimmune Related Diseases Association, Approximately 50 million Americans, 20 percent of the population or one in five people, now suffer from allergies and autoimmune diseases.

As diseases go, Crohn’s Disease is one of the more miserable.  The immune system attacks the digestive wall, causing severe inflammation.  This can result in a host of complications.  Surgery to remove portions of diseased bowel is common.   Symptoms range from minor to severe, these can include pain, bloody diarrhea, fistulas, strictures, abscesses. I have moderately severe ileal-colonic Crohn’s disease. I was diagnosed when I was 16 years old, I’m currently 38.   I’ve already had my descending colon removed and resected.  I’m trying to avoid another surgery, but statistically my chances are grim.

In late 2007, I reached the place that every patient with a chronic, incurable disease fears:  I ran out of good medical options. (4) I had failed the  biologic medication Humira, (or adalimumab).   Humira tripled my inflammation and made my symptoms 3 X worse.  It also can cause a fourfold increase in certain cancers, or life threatening infections, part of the ever present risk to benefit ratio we patients must choose every day.

At this time, I was 137 pounds.  (I’m currently 155 pounds, so I was very underweight.)  I had bloody diarrhea over 10 X a day.  I was anemic,  weak,  house bound, unable to work.  I could tolerate about 5-10 blended foods. I was in severe pain.  I had low grade fever, night sweats, and on no medication, because even steroids had failed to work.

All that was left to try was (5)methotrexate, a chemotherapy drug, or the two drug trials at UCSF, but because I had failed Humira, I needed to wait 90 days to qualify.

So I started to research other options.

(6)I had read about the University of Iowa trials in 2004 with pig whipworm ova, trichuris suis ova or TSO.  Dr. Weinstock had done several small studies showing that TSO was effective and safe for IBD.    So I asked my doctor if he approved of TSO therapy.  He would, and I went to order the ova.

(7)I found the company Ovamed, an online order form.  It cost 300 euros a dose, which is currently about $420 and you have to drink the eggs every 2 weeks.  IF it worked, this therapy, which is not covered by insurance, would cost me over $10,000 a year.  I couldn’t work, we were financially on the edge.  But I thought I’d give it a few months’ try. If it worked, I’d figure out how to pay for it later. (8)  But the FDA had temporarily blocked importation of the organism, citing one case of a patient where a mature worm was found in his colon, so I couldn’t get any TSO.

I started reading about the hygiene hypothesis, which is also called the Old Friends’ Hypothesis, or now the Depleted Microbiome Theory, and found many intriguing studies. (9) Helminths and harmony  (10)Parasitic worms and inflammatory diseases. (11) Inhibition of autoimmune type 1 diabetes. (12) Association between parasitic infection and immune response in MS,    (13)Does the failure to acquire helminthic parasites predispose us to Crohn’s disease?  Articles were pouring in, all hypothesizing that worms were a natural part of our microbiome,  part of the development of the human immune system, and because we had, for the first time in human history, lost our symbiotes, our bodies were responding with inflammatory diseases like never before.

The research was overwhelming, but I couldn’t get any worms. <5 minutes>

(14)I found a dose ranging trial with necator americanus and CD patients in Australia.  I started reading about Dr. Pritchard’s work.  At the U. of Nottingham he had completed a safety trial, an allergy trial, and an asthma trial, and had just begun a (15)Crohn’s disease trial testing the efficacy of 10 Necator Americanus for 3 months, and I asked if I could join.   It turned out I could participate as an American, but I had to visit Nottingham 6 times over  3 months, and as it was a placebo controlled trial, I had 50% chance of getting nothing.  I really wanted to  join that trial, but I was too sick to fly, let alone 6 times from California.  If it weren’t a placebo trial, or I were  guaranteed to get the worms, I would have done it.  But I put aside my opportunity to participate in helminth research, and I kept looking for worms.

(16) I found a private company selling hookworm larvae online.   I contacted the provider, Jasper Lawrence, to get more information.  Strangely, he lived in my hometown, and I thought of all the places in the world, what an odd coincidence that there would be a hookworm provider who lived just a few miles away.    But he only offered the infection in Tijuana, so I’d have to travel across the border to get my  hookworms, and pay an enormous amount of money for them.  But it was less money than 1 year on TSO.

I talked to Jasper Lawrence.  I  asked a lot of questions.  Since  the organism went through the skin and I couldn’t find much evidence of coinfection amongst hookworms,  I figured at the very worst I would get an empty band-aid, but since Jasper lived in my town, I thought I could always knock on his door and demand my money back.

(17)So I went to Mexico.  For the very first time.  I grew up in LA, and I had many opportunities to cross the border, but I’ve had Crohn’s disease since I was 16, so the irony is I never went to Mexico for fear of catching parasites.

I met Jasper Lawrence.  I met Dr. Llamas who he was working with at the time.   I asked for 10 hookworms to mimic the Nottingham trial.   I felt the sensation of the worms going into the skin.  (You feel a sensation of tiny fingers drumming against your skin, then all I can describe it is like tiny worms burrowing into your skin.)  I got my $7,800  band-aid, which to be fair, included 3 infections total.   I drove home.  It was December 17th, 2007 and this was my Christmas present to myself.

As a patient putting parasites into my skin, I am often told that I am very, very brave. People wonder how I could possibly stand to have hookworms enter my body and live in my intestines.

I always answer that the drugs used for my condition require much more courage.  I almost died from neutropenia (which is a reduction of white blood cells) caused by a standard drug used for Crohn’s disease, 6mercaptopurine.   The drug Remicade, or infliximab, is delivered via IV often in your local hospital infusion ward.  Receiving this medication, surrounded by chemotherapy patients, knowing the medicine itself can cause a fourfold increase in lymphoma, is very frightening.   A few hookworms seem like nothing compared to the risks we take with our medical choices everyday.

My arm itched a little, but not badly. (18) I had a single red dot for a rash.  I had read about the intensive itch that hookworms could cause, so this was very anti-climatic.

Day 3 I came down with a 100.3 fever.  My diarrhea increased from about 7 X a night over 15-20 X  a day.  I had no idea if I had just picked up a bug on the way to and from Tijuana, if it was the hookworms.   I had no one to ask advice from.   My doctor was unsupportive of trying hookworms, besides the too little evidence, he reminded me that I had no idea what I was getting in Tijuana.  I had been the one to inform him of their current use in research,  so I simply took lots of Immodium, probiotics, and I waited.

<10 minutes>By week 3, my ankles started to swell.    They soon grew so painful, I could barely walk.  I went to my doctor and he diagnosed them as arthritis and edema.   so I suspected the hookworms, but no one could be sure. I almost took an anti-parasitic medication, because at this point the arthritis spread to all joints.

But my bowel pain also began to recede.   By week 6 things started to improve, by week 9 my ankles were normal and the arthritis had gone.    I started getting an enormous appetite, and it I carefully introduced one food at a time.

By month 4 I had gained 20 pounds, I had added over 30 new foods, I had no bowel pain, and I was going to the bathroom about 3-4 X a day.  My skin was clearer, I had no more rectal bleeding.  People who hadn’t seen me for a while said I looked better then I had ever looked before.

(19)I took a blood test before introduction of the worms and at 16 weeks.  During this time I was on no medication.  Before, my ESR and CRP (two blood markers of inflammation) were 31, normal being less then 20 and 5.4, normal being <0.8.  (20)At month 4, these numbers came down to 7 and 0.9 respectively.  I visited Dr. Terdiman at UCSF, we compared the numbers, he weighed me, palpitated my abdomen,  it was soft. We determined the great hookworm experiment a triumph! (21)   I had at last found something that worked, was natural, I’d gone through the side effects, and I would live happily ever after!

But I made a terrible mistake.  At the time, the trials using 10 hookworms seemed to be chosen with safety in mind, rather than the best number for efficacy, and there was much debate among those of us experimenting with worms, as to the number of organisms necessary to elicit an immunological response.  So I thought I’d increase my population by adding worms in 2′s and 3′s, weekly or biweekly.  I added 25 more worms to the original 10 for a total of 35 worms over a 6 week period and soon after my wonderful blood test, I began to regress.

(22) I found a study that showed that two healthy volunteers with an established hookworm infection, when adding more hookworms, ended up with the same number they started with, documented with pill cameras that they swallowed.  I started wondering if adding worms so frequently had caused my immune system to reject some of the new worms, or perhaps I lost some of the  initial 10 worms, leaving me with not enough to sustain benefit.

I thought I could find a lab to do an egg count for me.  I tried UCSF, then Quest lab, Stanford, UC Davis, no one could help me.  All labs would do a standard O&P, but no one would do an egg count.

Meanwhile, my symptoms were progressively getting worse, I was losing tolerance to the foods I had added, I was losing weight again.  Months were passing, and I didn’t know if I still had hookworms, if so how many, if I was a treatment failure because I lost my worms or because I had added too many too soon.

Finally, in December of 2008  3 O&P’s came back negative, and I figured the hookworms were dead.

But I had had such an initial positive reaction to those 10 hookworms,  I thought before I threw in the towel, I’d try one single dose of 10 more and wait and see what happened.  So I got 10 more hookworms on February 2 of 2009.  This time they caused more of an itch, more of a rash.  I felt an initial elation for the first few days after infection, which many patients describe.  I took a before blood test, and I waited.

I had fleeting joint pain.  No edema.  No fever, and a little diarrhea, some fatigue. (23) By the 4th week, my CRP and ESR had returned to normal. (24) I got hungry.  I started sampling new foods.  I tolerated wheat.  I was in food heaven.

I kept a blog to document my effects. (25)   (26)There’s a Yahoo forum where other patients write about their progress. I heard from many patients with all sorts of autoimmune diseases who were reversing their symptoms with a small number of hookworms.   A patient with Sjogernes syndrome had recovered moisture in his mucus membranes.  Reports of allergies, asthma, MS cessation came in. I personally had a friend with CD dramatically improve.   It was a very exciting time.  (27)  CBS San Francisco contacted me and  I did an interview for them.  Here I am  in my backyard lamenting the lack of research into helmintherapy in the US.  (28)Here’s my gastroentrologist, Dr. Terdiman, who remember hadn’t heard of the use of hookworms in 2007, now supporting the theory, if not the practice of helmintherapy. <15 minutes>

(29)And here’s  Dr. Homer Boushey, Chief of Division of Allergy and Immunology at UCSF saying quote:

” Of course, ideally I’d like to see us figure out what part of the hookworms is responsible for this benefit, so we could develop a therapy we could give without having actually to infect people with a parasite that does, after all, cause problems.”

Let me interject here by saying that although I am glad research into worm products that mimic the effect of the live worm are underway, and are needed, we all must realize that many patients can’t afford to wait the amount of time it will take to develop these drugs.   And we are more then happy to experiment with the live worm in the meantime.

And what problems do hookworms cause? Anemia?  I realize in the third world they can be devestating, especially to developing children.   What are the numbers necessary to cause anemia, and since we can control the hookworm population,  (they do not reproduce in side of the body), isn’t this a side effect we can manage with adequate nutrition or iron supplements?    Whereas our other drug choices cause considerably more side effects, many more dangerous then merely anemia.  I want to remind doctors and researchers of this: the live worm is still far safer to experiment with then most things we have to try.

But back to my story.  It was a very exciting time.  I was able to ride my bike.  I played with my girls. I had energy, I looked healthy.  I reached 165 pounds.

But because I had lost my worms the first year and didn’t know how or why, I was more determined than ever to quantify my worm burden. Because I could find no laboratory to do them for me, (30) I went on the internet and found a tutorial on McMaster egg counting. I figured out all of the equipment I needed.  I borrowed a microscope.  And one morning, I did my first McMaster egg count!

(31) It was fun identifying the hookworm eggs under the microscope.     I started measuring eggs per gram every month, and as I was already taking monthly blood tests to assess my inflammatory levels,  this was the way I tracked my population all last year.

Unfortunately, I never did a colonoscopy at this time, which would have most likely shown the dramatic benefits I experienced from helmitherapy.

The good times lasted about 6 months.  And then the pain in my ileal-cecal region started to rise.  I began to have more reactions to some of the foods I was eating.  My stools were becoming more frequent.    So I decided to add 10 more worms and see what would happen.

10 more hookworms on September 26th, 2009.   The lift, (32)the rash, the temporary digestive worsening and fleeting ankle pain until about week 6, when this cohort matured. The interesting thing for me is my egg count doubled, showing that the new worms didn’t necessarily displace the resident worms, and perhaps I had added to my population.

My inflammation stayed normal for another 6 months, and my egg count started to decline, which brings us to March of 2010.   Jasper Lawrence had been raided by the FDA, and fled the country with his wife and his worms.  None of us could get access to the worms for a while and it started to become clear that outside of the research setting, we really had few legal rights.

There is a lot of confusion right now amongst those of us experimenting with worms, what we are allowed to do at home regarding egg counts or incubation and self infection, since legally the worms are only available in the study setting, and are classified by the FDA as biologics.  For those of us who receive worms either in the wild, or through a private company, are we allowed to incubate the worms and infect ourselves in the US? What rights as patients do we have with these parasitic organisms? (33) A new wiki site has been formed to help the “underground worm community” collate this information.  It’s an interesting problem that occurs when people are using infectious organisms to control their disease.  <20 minutes>

The legal way to get helminths is to participate in one of the current trials.  But there are few helminth studies available.  If you have MS (34), there’s currently a study with 20 patients testing TSO.  (35)There’s  a TSO trial for 18 people with peanut allergies  (36) There is a third TSO trial for 10 adult patients with autism here in the US.  For hookworms,  a celiac trial has been completed in Australia, hopefully that will lead to more studies there, and there will be a (37)MS study in Nottingham, England.

You can order TSO now and get it shipped to your door, at 300 euro a vial.
There are 3 other commercial companies selling worms, (38)AIT, which ships hookworms or human whipworms anywhere outside of the US.  (39) wormtherapy, which requires going to Tijuana to get infected if you live in America, and (40) Immunologica, a company in Spain selling hookworms, but who knows how long these companies will be allowed to stay in business?  And of course, you could always go to the tropics and get the worms yourself.

But back to March, April, May. My inflammation started to rise.   My egg count steadily declined.   I considered switching to TSO since it was currently available, but I was back to the enormous expense.   I finally ended up buying new hookworms through the other commercial company, wormtherapy, with Garin Aglietti and Dr. George Llamas, who I met when I first worked with Jasper Lawrence.   Back to Mexico. June 2010.  This time I tried 15 hookworms.

I had done an MRenterography two days before I went, and at this point, I was down to 50 epg at best, and the sigmoid colon was very inflamed, with a complex fistula going from my sigmoid colon to my right ovary.   But I was hopeful that the new worms would  make things right, and it was the longest I had gone before reinfecting  So I  payed  $2,200, got my hookworms, drove back home.

(41)I got my worst rash yet.  Here it is 24 hours later,(42) 48 hours.

The new worms hit my gut at around 3 weeks, and things got very bad.  I started having abdominal pain, increased diarrhea.  Finally after 2 weeks of this I decided to go on Prednisone, a systemic steroid that dampens the inflammatory cascade.   Finally, at week 9, my egg count shot up to about 500-750 epg, I started feeling better, and I was almost weaned off the Prednisone.

But this is where I made another terrible mistake.   Because I’ve had surgery,  knew about the fistula, and I was hearing excellent reports of colonic improvement with trichuris trichuria,   I thought perhaps if I added the safer TSO to the hookworms, I would have a better effect than just hookworms alone.

So I payed another $4000 and bought 7 vials of 2500 trichuris suis ova.  It wasn’t blocked importation, and the box came to my door.  The box was very interesting.  “A Pearl of Nature for Immune Therapy”.

I drank my first vial (8 weeks) after getting the 15 hookworms.  The liquid tastes slightly salty.
I felt a little queasy for a few days, and my bowel symptoms worsened.  I waited 2 more weeks.  And drank another vial.

This time, I had diarrhea the next few days, a lot of colonic pain, and a low grade fever.  But my daughter had the flu.  So I wasn’t sure what was what.

I tried one more TSO dose 3 weeks later.  The third dose was thoroughly rejected.  I had explosive diarrhea for days, another low grade fever.  My abdominal pain became severe, I  started having night sweats.  I finally went back on Prednisone, this time at a higher dose to control the symptoms.  I checked my egg count after a few weeks, and the hookworms survived the onslought,  but the egg count seems to have fallen a little bit, so I may have lost a few worms to my response.

Why did I react so badly to TSO?  Was the combination of hookworms and pig whipworms? Did I introduce TSO too soon after  the hookworms? Was it too high a dose?  Is there a bacteria in my gut that was activated by the presence of the whipworms?   I don’t know, but that’s the end of the TSO experiment.

(43)That was 6 weeks ago.  I still haven’t fully recovered. It was very hard coming here today and giving this talk,  besides having difficulty in traveling with digestive symptoms, I wish I could have come as a stunning success story, like last year.  I’m now up several times a night to use the bathroom. I have some rectal bleeding, some pain, loose stools.  I lost 10 pounds in 2 weeks after that third TSO dosage.  I am no where near where I was earlier this year, but I’m still hopeful.

Am I a failed helmintherapy patient?  Or have I demonstrated remarkable efficacy for a relatively small amount of worms? Should I stick with hookworms or give up and go back to traditional drug therapy?   Should I do them both combined?    Should I try trichuris trichuria?

I have 3 new drug options now that I didn’t have before.  All biologics.  One in the same class as the last one I failed.  There’s a new drug approved for psoriasis but it’s being used off label for CD, so there are not much data on it.  My last option, Tysabri, or natalizumab has a 1 in 1000 chance of (PLM) a rare infection of the brain that cannot be treated, prevented, or cured and that usually causes death.  And of course, there’s always methotrexate.

I’m crossing the border tomorrow, going to Tijuana to get 10 more hookworms.  If these next hookworms fail to bring me back into remission in the next few months, or if I get considerably worse in the meantime, I will try the next drugs, and hope for the best.

This journey has been a great adventure.   For better or for worse, I am a voice for all the patients out there who want to get worms safely, who want to participate in worm research.

If I can do anything to influence you, I urge you to help us patients connect with you researchers and our doctors, so together we can prove or disprove the hygiene hypothesis quickly.  The research is going much too slowly, we will lose our colons, or  forever be confined to a wheelchair if we wait for all of the proper studies to be carried out, especially if we have to wait for a pharmaceutically derived worm product.  We are willing to be case studies right now, to do before and after testing.  We want to help educate our doctors and experiment with what is so much safer then most of the remedies they have to offer. We have thousands of years of co-evolution with these worms, hosting them is not as dangerous as the diseases we are trying to treat left unabated. We have money to donate to research, but we don’t have the collective organization needed to unite the 1 in 5 Americans currently suffering who may benefit from this therapy .

(44)There was an article online recently  in a journal called the Evolution and Medicine Review.  “Reconstituting the Depleted Microbiome to Prevent Immune Disorders”  and from this article I’ll read  a few paragraphs that I think most eloquently represent the urgency that  patients  feel about the slow pace of research into this remarkable field:

(45)”We as immunologists are now faced with the unsettling realization that the immune system we have spent all of our effort and energy studying over in the past fifty years has turned out to be dramatically different than the system derived by natural selection. We find that “normal” is not helminth-free, and that our co-evolutionary partners must be included if we want to address the “normal” state of things. From a medical perspective, it is difficult to imagine that we will be able to restore the immune system to normal using a pharmaceutical that is directed at one cog in the immune apparatus, when in fact the entire apparatus is entirely out of sync with nature.  Pharmaceuticals do not effectively recapitulate biology derived by hundreds of millions of years of natural selection.
At present, we need to direct intensive research toward biome reconstitution. We need to know which organisms to utilize, and when and how to utilize them… We need to know the effects of biome reconstitution not only on one generation, but on subsequent generations.  In short, we need to know how to reconstitute our biome and keep that biome healthy. It is time for a paradigm shift in the enterprise of biomedical research and subsequently of medicine. Our evolution and our resulting biology require it.”
I should not have to be traveling to Tijuana to get infected with hookworms.  I should not be doing my own egg counts. I should not be worried about my legal rights if I wish to self infect.  I should not be paying thousands of dollars for some larvae.  I should not have to wait years for this research on the depleted Micribiome theory to be proven.  I should not have to wait for a pharmaceutically derived worm product, when the worms themselves are available now.

(46)What can we do to make this easier for all of us?  How can we influence helminthic research?  How can we unite the various autoimmune communitites together? How can we start repleting the microbiome?  How can we educate and convince the medical establishment to support us in our experimentation?    Would more case studies be beneficial?   Is there a way we can help fund the research?    Can we share the information that we’re gathering? Is it possible to create a public database so that those of us experimenting with the worms outside of the research trials could have a place to collate our side effects, our blood tests, our MRI’s, our colonoscopies,  whatever proof we have of the worms effects’.   There are over 200 patients trying this right now, how can we let our data go to waste?  How can we make worms safely available?

There are still so many unanswered questions. I realize we are at the forefront of all of this.  I was once told that I was in uncharted immunological territory.  I realize the limitations that researchers and doctors find themselves in, and we have to work under the guidelines of the FDA, of standard medical practice.  But this is a worm.  And if we are meant to be parasitized with a small number of these worms, we have to figure out a way to make them available before the years if not decades that our standard research and medical system will take to prove their effects.

I am only one patient of helmintherapy.   I’ve experimented far more than the average patient.  I’m the only patient I know of who’s doing egg counts, and I may be doing them wrong.  I’ve used 3 out of 4 of the commercial providers. I regret not participating in the trials, but the stakes were too high. A small amount of hookworms have seemed to give me remarkable results, for about six months’ time. And I admit that CD can be a waxing and waning disease, so since I did not get my tissue or blood analysed immunologically, my case is an anectdotal  at best.  However, I’ve had gains from the hookworms, like being at the heighest weight ever in my entire history of Crohn’s disease, and tolerating foods I could not eat in the past, even when on Remicade or the best drugs that exist for CD, so though I cannot prove to you the benefits I’ve gotten from hookworms, I know my body and I’m all too familiar with my disease, and I’ve experienced what the hookworms can do.  Like all patients with an incurable, life-threatening autoimmune disease, I am desperate for a therapy that is safe, natural, and works, and I feel that I’ve found one that is at least partially effective for reversing my Crohn’s.  I’m still ironing out the species, dosage and other details, but I do still have hope.

I can’t tell you if helmintherapy is going to be successful for me in the longterm, or if I’ll have to abandon it and try the next conventional drugs. I’m only 3 years into this…I’ll get to show you all my rash on Sunday if I have one.  But I will have to wait several months to see if the worms are effective again in bringing my inflammation back to normal, if I’m able to taper off of Prednisone without ill effect, if the hookworms alone will be enough.

(46)So the worm journey continues.  I hope that I have inspired some of you to help make this therapy more available so that other patients do not have to follow in my footsteps.  I hope that there are people in this audience who can bring this therapy greater attention. I hope I’ve provoked a lively discussion on our legal and evolutionairy rights as human beings.  I thank the commercial providers for giving us the chance to try this therapy now. And, I thank the doctors and researchers for moving forward with their studies, for your research is truly life altering.  Thank you all for listening.

I did only 1 egg count since the TSO disaster, and it was 500 epg.  I will do another tomorrow and assess my current worm population.

I’ve finished my slides for the BTeR Foundation, and am now practicing my talk.  I plan on borrowing a conference room on Sunday and filming a trial run, so I’ll give you all a preview in a few days.

Here’s a link to the BTeR conference:

http://www.bterfoundation.org/icb/icb2010.htm

I encourage you all to come.

In my talk, I discuss my reaction to hookworms, both the initial side effects and benefit by month 4.  I talk about how adding worms in “trickle doses” caused me to regress, and ultimately I lost my worms by the end of the first year.

I reinfect, get good efficacy for about 6 months, my egg count starts to drop.  I reinfect, get another 6 months.  Then Jasper Lawrence is raided by the FDA, flees the country, I go 9 months without being able to infect.  I discuss the lack of legal rights as patients; can we safely incubate and self infect?

I add 15 more worms in June, get worse, go on Prednisone, get better.  I add 3 doses of TSO and get substantially worse.

I talk about the microbiome and the slow pace of research on the hygiene hypothesis.  How patients cannot wait.  How we are willing to be case studied, to document our effects, but often our doctors are disinterested.  I ask how the autoimmune community can unite with the researchers to help propel helmintherapy research forward.

We’ll see what comes of it.  Hopefully it will be an inspiring evening.  Then I’ll get more worms….