Overview of my experience with Worm Therapy

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.

  1. Jcin’s avatar

    Hi Deborah
    Im very glad that your current treatments are working reasonably well…!
    I think I asked previously..are you HLAB27+ ?

    Best Wishes

  2. admin’s avatar

    I don’t know…how do I find out and what does it mean?

  3. Garin’s avatar

    Hi Deb,

    A small but significant clarification. I host more worms than I would prefer because I am also a reservoir for my clinic and our incubation techniques require a certain amount of ova. While it occasionally becomes bothersome to be so dedicated to supplementation I credit the worms for literally saving my life.

    My psoriasis is so well controlled I rarely notice it anymore and this is after nearly six years of hosting at doses ranging from 7 to 227 L4s. No more chest pains, no more crushing fatigue, no more strange looks when people notice my plaques, and allergies are a distant memory. I am as happy or happier than I can ever remember being in my life and look forward to hosting hookworm for the foreseeable future.

    You and I talk about these issues frequently so I know what you are referring to in your post, but new readers may not understand the nuances of your reference.

  4. admin’s avatar

    Thanks for that clarification Garin. I am feeling jealous that other people can hold on to a high enough number of worms to keep healthy, and I’ve had such problems with them. Now I’m regressing somewhat, and very frusterated. But I’m glad you’ve had such an ongoing, positive response. I wish we were all so lucky.

  5. Jcin’s avatar

    Hi Deb
    HLA-B27+ is a gene that is common to many with Arthritis/Crohns
    I wonder if there is anything different in people with HLA-B27+ gene in reference to how the worms react with the body.

    HLA-B27+ is protective against HIV and Hepatitis C for instance….

    To find out if you are HLA-B27+…a simple blood test will tell you.

  6. Linda Hagar’s avatar

    Thanks for sharing all of this. I am a member of the yahoo groups, and I was getting pie in the sky ideas of what the worms will do for me. I hope to have all of my dreams fulfilled, but only time will tell! First, I need to find out if my worms are still alive, or if I accidently killed them with lidocaine!

  7. Denise’s avatar

    My daughter started the double blind therapy today. Looking for info on the internet that I could get more info from. She has had crohn’s disease for 14 years and she has struggled for about 9 months.

    ddac1982@comcast.net

  8. Maya’s avatar

    I can’t thank you enough for posting your experiences. I don’t have Crohn’s, but I have enough allergy/autoimmune/GI problems that I am in significant discomfort all the time. I have been researching helminth therapy and will probably try it, despite the potential side effects. Your blog has been informational and I sincerely appreciate it.

  9. admin’s avatar

    I’m glad what I went through is worth something to someone. If you do decide to try helminth therapy, let us know how it goes!

  10. MF’s avatar

    thanks for sharing this. As someone with autoimmune disease and numerous food intolerances, worm therapy has caught my interest (but lack of accessibility and high cost are barriers). Very interesting about your experience with the magnesium loss and depression. Magnesium is the most useful supplement to me and I am on antidepressants, so those effects are last thing I need.

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