The Frustration of Worm Therapy

It’s been 2.5 years now that  I’ve been playing with hookworms.  It’s been a very exciting and trying journey.  When I began, my choices were TSO (trichuris suis ova, or  pig whipworms), or a trial for hookworms at the University of Nottingham.  I chose TSO, but the FDA had blocked importation of it temporarily, and I wasn’t going to get any for several months.  I contacted Nottingham, and they would take me as a patient, but I had to travel to England 6 times and I had 50% chance of a placebo, and they only gave you 10 worms, and if it worked, they weren’t allowed to give you any more if you needed them.

Then I stumbled on AIT, a private company selling hookworms.  I was skeptical of their business operation, and tried to contact multiple people who had tried the worms through them, but they had just opened up the clinic a few months before, so I only read one online account of a patient with asthma and allergies that had remarkable relief, (which I later found out to be Jasper of AIT) and finally, one of the clients from Australia wrote to me that it was legit, and they had indeed receieved hookworms, though it was too soon to notice benefit.

I asked for blood tests to prove the resevoir donors weren’t infected with the typical nasties, took my credit card and my hope to Tijuana, and got to meet Jasper and Dr. Llamas, and took the plunge.  It’s all detailed in this blog.

The thought was, just get through the initial side effects, and if the worms were going to work, then I’d be good for as long as they stayed alive.  It was really, really hard to suffer the initial side effects (edema in my ankles, reactive arthritis, increased diarrhea), but several months in, I started to get better, and it was very exciting.  Finally, I had found something that worked!  But we decided to experiment on me, and I tried weekly doses of 2 or 3 worms, and everything went to hell.  I didn’t know what was wrong.

It took months to figure out that I had somehow lost my worms.  During that time, there were a lot of questions, emotions, and unfortunately, fighting behind the scenes between the worm providers and me.  It was horribly stressful, and here was this thing that held so much promise, but was governed by personalities that were extremely difficult.  But we managed to work through it, and I was finally offered more worms for relief.

I  got to reinfect last February with 10 more hookworms, and I started to improve again.  But I did iron shots at that time, since I was so iron deficient from the years of Crohn’s, and I developed nueropathic symptoms that no one could figure out.  An MRI and a full work-up at the UCSF neurology center revealed nothing, and I was sent on my way to see if it was the iron, the worms, or a new disease that was developing.  It was extremely scary.

The nuerological symptoms faded somewhat, but what emerged was anxiety, insomnia, and horrible PMS every month.  I endured this for several months, and started having constant muscle twitching, charlie horses, and the numb hands, tingly lips, and feeling just kind of out of my body continued.

The Crohn’s never got to a point where I had a solid bowel movements every day.  I made the mistake of abandoning my diet (SCD) pretty early on in the therapy, and though I tolerated the foods somewhat, this might have been the cause of some of my demise.  I went back on the diet for several weeks when things would worsen, but having opened up the Pandora’s box of being able to eat at social engagements and restaurants again was too much to turn away from.

But by last summer, the Crohn’s was worsening, more diarrhea and mucus, and finally, after a particularly difficult PMS, I redosed with 10 more worms to see if that would help everything.  I also got pregnant that week, and the next few weeks I had increased diarrhea, the nueropathy got way worse, and then I got the positive pregnancy test, something I had wished for for years, but the hormonal imbalance became extreme, and my pregnancy was met with total insomnia – I only slept for a few hours each night, and the anxiety and depression went through the roof.  (I later found out I was magnesium deficient, the source of most of theses problems.)

I meditated daily, I had been working with a pyschologist for months.  The fear of the unknown, not having a trusted worm source, lack of support or knowledge from my medical doctors, very few studies to look towards, riddled this therapy with anxiety.  I had this blog, which was attracting a lot of attention and support, and I read many reports of people doing great on the worms, just one dose, a few months of side effects perhaps, if they got anything, then they were well!  I went into this thinking that was what my experience was going to be; I didn’t think that I’d only get a few months’ relief each time, and I certainly didn’t expect other things to decline.  But the worms still held so much hope, and I had a normal CRP every month, which was confirmation of their efficacy, and proof that the worms worked to curb inflammation well.

I took egg counts all last year, since I was paranoid that I was going to lose my worms again.  It seemed to me a good way to track the rate of egg laying, and short of a camera endoscopy, the only way to keep track of the population.  My egg counts didn’t seem to decline much with the decline in efficacy, but I had such a low worm burden, it seemed prudent to try adding, and it did work each time last year within a month to take the pain and inflammation down.

The pregnancy wasn’t sound, and I had to wait 5 weeks for a natural miscarriage, since the meds they use  to induce abortion  are contraindicated in Crohn’s, and I had already had a D&C 4 years ago, which required an antibiotic, which flared me horribly at the time, so I was trying to avoid that option.  The anxiety and depression finally was improving a bit with an SSRI, and I miscarried dramatically, but had one piece of tissue left over for a month, so bled and bled, until finally they fished it out and I was done, albeit extremely iron deficient.

The Crohn’s started to worsen again in early Spring.  In March of this year, my CRP started to rise, just a point above normal, but I felt it.  My ilium was starting to be inflamed again, and I was getting nauseous.  I went back on a stricter diet.  I finally was diagnosed with low magnesium, and we tried a series of shots, supplements, and transdermal mag, but after a month, my symptoms were worse, and there was no improvement in the red blood cell magnesium test, so we abandoned the shots. (Note: transdermal twice daily magnesium chloride baths are reversing the symptoms finally.)

Meanwhile, AIT had been raided by the FDA, and there were a few months that no one could get worms anymore.  I started to research incubation, and my egg count was staying high, but my Crohn’s was getting worse.

Finally, AIT was shipping again, but one had to travel to Canada or Mexico.  I was thinking of adding whipworms to see if that would help the colonic and anal symptoms (mucus, “wet farts”, still going to the bathroom 3-5 times a day), and I was thinking I could just up my hookworm population myself.

My incubation failures stacked one week on top of another, and every week of failure brought a further worsening.  Meanwhile, my physician gave up on my magnesium issues, sending me to an endocronologist, who tried a few things, then also gave up, and yesterday I visited a new gastroentrologist for advice.

So I’m back to where I started 2.5 years ago.  My CRP is again higher then last month; it’s almost up to where it was before I started the worms.  I’m still at a higher weight, but have lost about 9 pounds now in the last 2 months.  The neuropathy is still there, it ebbs and flows.  My iron has been rising, so I’m absorbing iron supplements without issue.  I don’t know why the magnesium won’t resolve.

So, I have TSO again, and it’s available now.  It costs about $10,000 a year.  There are three other companies that are selling hookworms; wormtherapy.com, to which one must go to Tijuana and pay $2200, immunologica.com in Spain, and the last I checked one must be a Spanish resident, or wormfriends.net, which is a brand-new operation with about 5 customers, and they ship to Canada or Mexico, but no guarantees of anything. (Update: wormfriends closed.)

So now I face the difficult decision of borrowing enormous amounts of money to try TSO, start over again with another hookworm provider, or keep illegally trying to incubate my own worms, without knowing what I’m doing wrong, knowing each week I don’t succeed is more scar tissue build up in my ilium, more suffering, etc.  Though I kind of like doing McMaster egg counts, there has been no enjoyment in the other process, and I don’t want to be doing it at all.

I went to a new gastro yesterday in San Francisco, and we did some celiac tests.  He wants to do an MRI endoscopy, a non-invasive method of looking at the intestines.  He felt my ilium and the scar tissue, he also felt the descending colon’s inflammation.  We’re doing a stool test that is more accurate then CRP to asses mucosal inflammation.  He’s going to call Dr. Weinstock for me to see if anyone else can help me with my worm problems.

I’m back on my diet, going to add more fish oils, turmeric (supposed to help tighten the bowel leakage, along with being a good natural anti-inflammatory), I’ve been on Celexa since December, which helps, but not with the PMS anxiety/depression, which is like a monster every month, just dealing with the pounding heart, the night sweats, the depletion, the hopelessness.  I’m taking oral magnesium, but it’s not helping.  I’ve learned to get by in life with constant twitching, feelings of anxiety on and off, bowel problems, etc.  I’m still stronger than when I started, but that feeling of the unknown is just horrible.

Will the worms continue to work for me, or is my immune system overriding them?  Do I need to dose every 6 months to prevent this from happening, and how many worms should I dose with? Is my improvement/regression due to not enough worms, would it not happen if I tried more?  Should I abandon the hookworms and switch to TSO? Are the resident hookworms I have helping at all?  Should I persevere with my own scientific experiments, even if it means waiting weeks or possibly more months before I get relief?  Will I get relief?  Will the perimenopause continue to worsen?  Should I go on another medication to handle the anxiety?  Will I ever up my magnesium, or must I deal with these symptoms forever?

I had such hopes for these worms, and I still think they are valuable.  It’s just so difficult to procure them, there are only 2 commercial providers, they are illegal in the US,  and there are so few options, most of them cost prohibitive.

It’s like the line onto a roller coaster, where you go back and forth, around and around, closer to your goal, but never actually being able to reach it.  I know there is some combination of worms, probiotics, diet, herbs, but I haven’t managed to find it, and today, I just feel like giving up, crawling into the ocean, and joining the tides that wash over us, lapping the surface with chaotic regularity.

Another day in the life of the worm experiment.  Back to the microscope, back to the intro diet, I must carry on.  I’m sorry for those reading this, I think most people are not having such a trying time, but the few people who write into the yahoo forum don’t often ever write again, so I have no idea who this is working for long term.

I wish I could get immediate relief.  I wish I had safe and easy access to the worms at any time.  I wish it were just all simpler.

  1. Greg’s avatar

    I say, go gluten-free and keep working at growing your own Hookworms. It seems difficult, but not impossible. Keep trying.

  2. HS’s avatar

    Some advice:
    1.I am on the gluten-free diet even though I don’t have Celiac and only have Crohn’s. It took 6 weeks on strict gluten-free diet to see a reduction of symptoms. It didn’t cure my Crohn’s but did reduce symptoms significantly. Try and eliminate ALL gluten – it’s not easy but you have nothing to lose.
    2. Wormfriends – Australian company seems legit, I saw a few reports that they deliver. Worst comes to worst – you risk $750. I’d say go for it.
    3. Get human whipworm ASAP. Hopefully a combination of both will help.
    4. Get a blood test for vitamin D. Make sure to supplement until you’re in the range of 5-70ng/ml.

  3. I’s avatar

    HS:
    1) Doing it. A few days in on grain free, sugar free diet. (SCD)
    2)Wormfriends just had to close shop, so are no longer shipping worms. I’d want a longer record, blood tests, and more client testimonials before I’d consider them.
    3) Don’t know how many to use, how often, and I don’t see a lot of data on other users yet. Wish I could afford TSO, ’cause I could just add that.
    4) Vit D is 55, so I’m in a good range.

    I think I just need more worms, and magnesium, somehow, and diet, more probiotics…maybe that will keep me in a better state.

    Thanks for the advice!

  4. HS’s avatar

    1) Just make sure you pay attention to all ingredients – there are many hidden sources of gluten. Who would’ve thought that teriyaki sauce and soy sauce contain gluten?
    3)Go with AIT’s recommendation on their best guess with the number of whipworm. It can’t really make it any worse.

    How many hookworm do you currently have?
    Do you take magnesium supplements?

  5. I’s avatar

    1) I’m pretty good at this diet, so I know I’m not getting any additional gluten sources. (Soy sauce isn’t allowed anyway)

    3) I can’t get whipworms anymore from AIT, and I’ve heard from at least one Crohn’s patient whose nasal allergies came back after adding whipworms, only getting better after adding more hookworms again. I might add them in the future, or possibly TSO if I become rich.

    I currently have 20 hookworms (assuming every one took).
    I take magnesium glycinate, did magnesium shots and infusions, and do transdermal mag. To no avail.

  6. HS’s avatar

    3) why can’t you get whipworm from AIT anymore?

    20 hookworm is a pretty low #. I have 35 and I know some people, such as http://worms.michellerowley.com have 70. Why not try a higher number (closer to 50)

  7. I’s avatar

    3) Too much conflict.

    I’m hoping to add more hookworms soon. I respond to pretty low doses – I’m thinking the frequency of infection is part of the immunomodulation, so the current plan is to try 15 and add every 5-6 months, or see how long I can go, redosing whenever things start to decline.

    Since I’m already having magnesium issues, I’m a little hesitant to try larger numbers.

  8. Hunter Schofield’s avatar

    Thanks for you candor and commitment to promoting helmith access. I have severe allergies and celiac disease which have evolved over the last several years into debilitating, chronic sinusitis (and now early stage asthma). While I underwent “successful” sinus surgery last December, my sinusitis has returned with avengence since the onset of the spring and summer allergy seasons. I am ready for the hookworm therapy and willing to travel. Is Worm Therapy in Mexico still my most reliable option for accessing safe treatment in your opinion? I did visit the do it yourself blog you recommended and the information seems great if you are fortunate enough to already be a host. However, it seems that the movement is not far enough along for me to secure a reliable infection through these channels. Your thoughts? Hunter

  9. I’s avatar

    I like wormtherapy in that they provide blood tests going back several years to show the host lacks HIV, AIDS, and that their samples aren’t infected with strongyloides. AIT has the most patients, over 200, so probably more experience, but they only have the one blood test from 2008, I believe. I could be wrong; hopefully they have more now. Wormtherapy uses Dr. Llamas who has some good additional info besides worms for various diseases. I’d call both parties and get a feel for them, then choose who makes you most comfortable. The DIY movement is just beginning, but it’s illegal to incubate in the US, and I would want blood tests going back a ways just to assure myself the hosts didn’t have any serious viruses, even if the chances of coinfection are low to none.

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