My talk:Â (numbers in parentheses are the slides)
(1)My name is Debora Wade and I have had Crohn’s disease for over 20 years.Â Since December of 2007 I have been experimenting with helmitherapy.Â 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.Â Â Â Right now 1.5 million people in the United States alone suffer from Inflammatory Bowel Disease which includes ulcerative colitis.Â It is one of the many autoimmune diseases that is becoming an epidemic.Â 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.Â The immune system attacks the digestive wall, causing severe inflammation.Â This can result in a host of complications.Â Surgery to remove portions of diseased bowel is common. Â 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.Â Â I’ve already had my descending colon removed and resected.Â 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:Â I ran out of good medical options. (4) I had failed theÂ biologic medication Humira, (or adalimumab).Â Â Humira tripled my inflammation and made my symptoms 3 X worse.Â 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.Â (I’m currently 155 pounds, so I was very underweight.)Â I had bloody diarrhea over 10 X a day.Â I was anemic,Â weak,Â house bound, unable to work.Â I could tolerate about 5-10 blended foods. I was in severe pain.Â 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.Â Dr. Weinstock had done several small studies showing that TSO was effective and safe for IBD.Â Â Â So I asked my doctor if he approved of TSO therapy.Â He would, and I went to order the ova.
(7)I found the company Ovamed, an online order form.Â It cost 300 euros a dose, which is currently about $420 and you have to drink the eggs every 2 weeks.Â IF it worked, this therapy, which is not covered by insurance, would cost me over $10,000 a year.Â I couldn’t work, we were financially on the edge.Â 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)Â 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 harmonyÂ (10)Parasitic worms and inflammatory diseases. (11) Inhibition of autoimmune type 1 diabetes. (12) Association between parasitic infection and immune response in MS,Â Â Â (13)Does the failure to acquire helminthic parasites predispose us to Crohn’s disease?Â Articles were pouring in, all hypothesizing that worms were a natural part of our microbiome,Â 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.Â I started reading about Dr. Pritchard’s work.Â 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.Â Â It turned out I could participate as an American, but I had to visit Nottingham 6 times overÂ 3 months, and as it was a placebo controlled trial, I had 50% chance of getting nothing.Â I really wanted toÂ join that trial, but I was too sick to fly, let alone 6 times from California.Â If it weren’t a placebo trial, or I wereÂ guaranteed to get the worms, I would have done it.Â 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.Â Â I contacted the provider, Jasper Lawrence, to get more information.Â 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.Â Â Â But he only offered the infection in Tijuana, so I’d have to travel across the border to get myÂ hookworms, and pay an enormous amount of money for them.Â But it was less money than 1 year on TSO.
I talked to Jasper Lawrence.Â IÂ asked a lot of questions.Â SinceÂ the organism went through the skin and I couldn’t find much evidence of coinfection amongst hookworms,Â 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.Â For the very first time.Â 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.Â I met Dr. Llamas who he was working with at the time.Â Â I asked for 10 hookworms to mimic the Nottingham trial.Â Â I felt the sensation of the worms going into the skin.Â (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.)Â I got my $7,800Â band-aid, which to be fair, included 3 infections total.Â Â I drove home.Â 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.Â I almost died from neutropenia (which is a reduction of white blood cells) caused by a standard drug used for Crohn’s disease, 6mercaptopurine.Â Â The drug Remicade, or infliximab, is delivered via IV often in your local hospital infusion ward.Â Receiving this medication, surrounded by chemotherapy patients, knowing the medicine itself can cause a fourfold increase in lymphoma, is very frightening.Â Â 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.Â 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.Â My diarrhea increased from about 7 X a night over 15-20 XÂ a day.Â I had no idea if I had just picked up a bug on the way to and from Tijuana, if it was the hookworms.Â Â I had no one to ask advice from.Â Â 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.Â I had been the one to inform him of their current use in research,Â so I simply took lots of Immodium, probiotics, and I waited.
<10 minutes>By week 3, my ankles started to swell.Â Â Â They soon grew so painful, I could barely walk.Â I went to my doctor and he diagnosed them as arthritis and edema.Â Â 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.Â Â By week 6 things started to improve, by week 9 my ankles were normal and the arthritis had gone.Â Â Â 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.Â My skin was clearer, I had no more rectal bleeding.Â 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.Â During this time I was on no medication.Â Before, my ESR and CRP (two blood markers of inflammation) were 31, normal being less then 20 and 5.4, normal being <0.8.Â (20)At month 4, these numbers came down to 7 and 0.9 respectively.Â I visited Dr. Terdiman at UCSF, we compared the numbers, he weighed me, palpitated my abdomen,Â it was soft. We determined the great hookworm experiment a triumph! (21)Â Â 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.Â 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.Â So I thought I’d increase my population by adding worms in 2’s and 3’s, weekly or biweekly.Â 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.Â 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 theÂ 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.Â I tried UCSF, then Quest lab, Stanford, UC Davis, no one could help me.Â 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.Â 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 2008Â 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,Â I thought before I threw in the towel, I’d try one single dose of 10 more and wait and see what happened.Â So I got 10 more hookworms on February 2 of 2009.Â This time they caused more of an itch, more of a rash.Â I felt an initial elation for the first few days after infection, which many patients describe.Â I took a before blood test, and I waited.
I had fleeting joint pain.Â No edema.Â 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.Â I started sampling new foods.Â I tolerated wheat.Â I was in food heaven.
I kept a blog to document my effects. (25)Â Â (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.Â Â A patient with Sjogernes syndrome had recovered moisture in his mucus membranes.Â Reports of allergies, asthma, MS cessation came in. I personally had a friend with CD dramatically improve.Â Â It was a very exciting time.Â (27)Â CBS San Francisco contacted me andÂ I did an interview for them.Â Here I amÂ in my backyard lamenting the lack of research into helmintherapy in the US.Â (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’sÂ 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.Â Â And we are more then happy to experiment with the live worm in the meantime.
And what problems do hookworms cause? Anemia?Â I realize in the third world they can be devestating, especially to developing children.Â Â What are the numbers necessary to cause anemia, and since we can control the hookworm population,Â (they do not reproduce in side of the body), isn’t this a side effect we can manage with adequate nutrition or iron supplements?Â Â Â Whereas our other drug choices cause considerably more side effects, many more dangerous then merely anemia.Â 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.Â It was a very exciting time.Â I was able to ride my bike.Â I played with my girls. I had energy, I looked healthy.Â 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.Â I borrowed a microscope.Â And one morning, I did my first McMaster egg count!
(31) It was fun identifying the hookworm eggs under the microscope.Â Â Â Â I started measuring eggs per gram every month, and as I was already taking monthly blood tests to assess my inflammatory levels,Â 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.Â And then the pain in my ileal-cecal region started to rise.Â I began to have more reactions to some of the foods I was eating.Â My stools were becoming more frequent.Â Â Â So I decided to add 10 more worms and see what would happen.
10 more hookworms on September 26th, 2009.Â Â 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.Â Â Jasper Lawrence had been raided by the FDA, and fled the country with his wife and his worms.Â 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.Â 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.Â It’s an interesting problem that occurs when people are using infectious organisms to control their disease.Â <20 minutes>
The legal way to get helminths is to participate in one of the current trials.Â But there are few helminth studies available.Â If you have MS (34), there’s currently a study with 20 patients testing TSO.Â (35)There’sÂ a TSO trial for 18 people with peanut allergiesÂ (36) There is a third TSO trial for 10 adult patients with autism here in the US.Â For hookworms,Â 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.Â (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?Â 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.Â Â My egg count steadily declined.Â Â I considered switching to TSO since it was currently available, but I was back to the enormous expense.Â Â 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.Â Â Back to Mexico. June 2010.Â 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.Â Â But I was hopeful that the new worms wouldÂ make things right, and it was the longest I had gone before reinfectingÂ So IÂ payedÂ $2,200, got my hookworms, drove back home.
(41)I got my worst rash yet.Â Here it is 24 hours later,(42) 48 hours.
The new worms hit my gut at around 3 weeks, and things got very bad.Â I started having abdominal pain, increased diarrhea.Â Finally after 2 weeks of this I decided to go on Prednisone, a systemic steroid that dampens the inflammatory cascade.Â Â 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.Â Â Because I’ve had surgery,Â knew about the fistula, and I was hearing excellent reports of colonic improvement with trichuris trichuria,Â Â 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.Â It wasn’t blocked importation, and the box came to my door.Â The box was very interesting.Â “A Pearl of Nature for Immune Therapy”.
I drank my first vial (8 weeks) after getting the 15 hookworms.Â The liquid tastes slightly salty.
I felt a little queasy for a few days, and my bowel symptoms worsened.Â I waited 2 more weeks.Â And drank another vial.
This time, I had diarrhea the next few days, a lot of colonic pain, and a low grade fever.Â But my daughter had the flu.Â So I wasn’t sure what was what.
I tried one more TSO dose 3 weeks later.Â The third dose was thoroughly rejected.Â I had explosive diarrhea for days, another low grade fever.Â My abdominal pain became severe, IÂ started having night sweats.Â I finally went back on Prednisone, this time at a higher dose to control the symptoms.Â I checked my egg count after a few weeks, and the hookworms survived the onslought,Â 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?Â Was the combination of hookworms and pig whipworms? Did I introduce TSO too soon afterÂ the hookworms? Was it too high a dose?Â Is there a bacteria in my gut that was activated by the presence of the whipworms?Â Â I don’t know, but that’s the end of the TSO experiment.
(43)That was 6 weeks ago.Â I still haven’t fully recovered. It was very hard coming here today and giving this talk,Â besides having difficulty in traveling with digestive symptoms, I wish I could have come as a stunning success story, like last year.Â I’m now up several times a night to use the bathroom. I have some rectal bleeding, some pain, loose stools.Â I lost 10 pounds in 2 weeks after that third TSO dosage.Â I am no where near where I was earlier this year, but I’m still hopeful.
Am I a failed helmintherapy patient?Â 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?Â Â Should I do them both combined?Â Â Â Should I try trichuris trichuria?
I have 3 new drug options now that I didn’t have before.Â All biologics.Â One in the same class as the last one I failed.Â 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.Â 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.Â And of course, there’s always methotrexate.
I’m crossing the border tomorrow, going to Tijuana to get 10 more hookworms.Â 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.Â Â 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.Â The research is going much too slowly, we will lose our colons, orÂ 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.Â We are willing to be case studies right now, to do before and after testing.Â 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 recentlyÂ in a journal called the Evolution and Medicine Review.Â “Reconstituting the Depleted Microbiome to Prevent Immune Disorders”Â and from this article I’ll readÂ a few paragraphs that I think most eloquently represent the urgency thatÂ patientsÂ 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 â€œnormalâ€ is not helminth-free, and that our co-evolutionary partners must be included if we want to address the â€œnormalâ€ 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.Â 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.Â 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.Â I should not be doing my own egg counts. I should not be worried about my legal rights if I wish to self infect.Â I should not be paying thousands of dollars for some larvae.Â I should not have to wait years for this research on the depleted Micribiome theory to be proven.Â 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?Â How can we influence helminthic research?Â How can we unite the various autoimmune communitites together? How can we start repleting the microbiome?Â How can we educate and convince the medical establishment to support us in our experimentation?Â Â Â Would more case studies be beneficial?Â Â Is there a way we can help fund the research?Â Â Â 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,Â whatever proof we have of the worms effects’.Â Â There are over 200 patients trying this right now, how can we let our data go to waste?Â 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.Â I was once told that I was in uncharted immunological territory.Â 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.Â But this is a worm.Â 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.Â Â I’ve experimented far more than the average patient.Â I’m the only patient I know of who’s doing egg counts, and I may be doing them wrong.Â 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 anectdotalÂ at best.Â 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.Â 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.Â 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.Â 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.Â 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.Â 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.Â 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.Â Thank you all for listening.