helminth therapy

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I killed the hookworms off at the end of April. So now it’s been 2 months hookworm-free. Physically, I have regressed somewhat. Anal mucus is back, most every day, I have more random anal pain. My acne at first got worse, but now looks better.

The hookworms were keeping the Crohn’s in remission, but…too many side effects. And I’m talking about the long term side effects. Not many worm hosters are 4 years into this. At first, I get high and happy from the hookworms, tons of energy for the first week. Then the side effects kick in at the end of week 2 and last until week 8, then the physical improvements begin and the Crohn’s improves.

It took 10 months for the mineral deficiencies to set in the first time. Magnesium loss – manifested at first as involuntary muscle twitches, then toe and calf cramps. Then as it kept falling, anxiety sets in, then insomnia. It suuuucks.

This last December’s innoculation only lasted until April before the magnesium fell enough to start causing constant symptoms. I don’t mind the muscle issues, but the emotional ones become too much.

I had gone on antidepressants to deal with the anxiety and insomnia two years ago. I had to take a combo of ambien, melatonin, benedryl, and valerian just to sleep on the bad nights, and it would still take several haunted hours to fall asleep.

Interestingly, my poor husband, who got 25 hookworms 2 years ago and 25 in December, no IBD or bowel issues, good absorption and digestion, started getting depressed last year and also went on antidepressants. He was feeling overwhelmed and didn’t want to get out of bed. He was having more leg cramps at night, and sometimes it seemed as if he had restless leg syndrome. He only hosted hookworms for me anyway; his walnut allergy never went away, so when I killed the hookworms and he didn’t need to host them, he killed them too. And guess what? His depression lifted, he dropped the Wellbutrin, and 2 months later he is back to his happy self.

Do hookworms cause depression and anxiety? Probably indirectly. They also can eliminate depression and anxiety for some, that happened to me at first. Though they may be manipulating seretonin and other such things in the gut, their constant drain may just deplete the body of certain minerals essential for nerve and muscle function, and magnesium affects the mood and mind, I’ve unfortunately discovered.

Why are other hosters fine? I don’t know. Maybe they have higher dietary intake of all the nutrients. Maybe they haven’t hosted for long enough. But I’m starting to see the advantage of a species that works much more gently on the body.

A few other long-term hosters are having issues too. Bubbleboy just killed the hookworms because he was becoming too depressed and unmotivated. Garin’s sick of hosting them and the constant nutritional supplement regime he takes to keep deficiencies at bay. Jasper was suffering from depression after leaving the US, and had some pretty extreme emotional issues even here, but whether or not the worms had any contribution is unknown.

While some responders are in their first flush of remission, most don’t know that the glory days seem to be the first 2 years, then the worms benefits diminish for some, and most need to go back to a cleaner diet, or start building to higher numbers, more species, or both. There are enough people doing well longer term that it’s worth pursuing, but I’ve only seen a few lucky people who are in remission for years without issues. Some lose their worms and just need redosing, some lose benefit, or like some of us, suffer too much from the negatives.

I left all the worm forums since there are a handful of diehards who have gotten great benefit from the worms, and seem to have their blinders on. They will not tolerate negative talk about one’s provider, my reflections on magnesium deficiency are met with so much derision (it couldn’t possibly be the worms, my blood tests, my husband’s experience, other hosters suffering the same muscle issues, it all must be suspect or I must have ulterior motives to bring down the worm world)…let’s just say it’s not supportive or very balanced. I miss the excellent links to all things Old Friends, worm-related, or autoimmune, but I don’t miss the drama.

I wish every experimenter luck- if the worms work for you, enjoy your first two years. Pay attention to symptoms of iron or magnesium loss, preventive supplementation may be better. For me, bringing up my mag levels has not been easy – too aggressive supplementation and I get diarrhea, the shots hurt and only last for a few days. I’m still twitching and cramping somewhat, but I have abandoned my antidepressant for the first time in 2 years and I’m sleeping without aid and have no anxiety. PMS is also a lot milder.

I really should get a colonoscopy and see where I’m at. I did just reach 170 POUNDS (I was down to 138 lbs last summer), though I need to cut back on chocolate treats (honey based) and cheating with tostadas and corn chips-I’m starting to collect fat. I’ve been biking a lot more, though sometimes I wonder if it makes my butt ache. I think the IVig, the probiotics (VSL#3 DS and multaflor,) and diet are pulling most of the weight.

The neverending experimentation continues, I still hate having a colostomy and dream that I can get it reversed. I’m enjoying feeling so strong and heavy. Mostly, I’m trying to get on with my life and support my children through their lives, help heal the trauma of Mommy’s rough last few years.

But the hookworms are dead and gone, and I will probably not host them again. They work for my Crohn’s, but not my sanity.

More Worms

I went back to Tijuana on December 28th for more worms. This time I crossed with my husband and Herbert Smith, another Crohn’s patient who’s done a huge benefit to the helminth community by helping create the wiki site and finding and caching every paper written on helminth therapy, as well as sharing his success with multiple websites. Like me, he had a fantastic remission on hookworms, enabling him to get off Humira and eat foods he formerly had an allergic reaction to. His Crohn’s became quiescent. However, he was under the impression that more worms and species were better, so he added 2500 trichuris trichura, and more hookworms, and finally began to regress.

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…

Well, the fecal transfusion failed to keep my CRP down.  Last time I checked, a week ago, it was 16.   And things are worse now, so I’m sure it’s even higher.  I don’t blame the fecal transfusions, since before, when I tried to come off antibiotics, I only made it 5 days without it descending into mushy stools and nighttime trips to the bathroom.   The interesting thing is I’m still having formed stools and almost no mucus, but what’s scaring me is a weird pain that feels right under my vagina, and a very full and inflamed feeling rectum.  I ignored too many symptoms last Fall waiting for the worms to work and ended up with 3 abscesses, and I don’t want to go down that route again

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.

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

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

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

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

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

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

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

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

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

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

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

Anyway, my points:

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

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

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