Hookworms prove life-changing for a patient with ulcerative colitis and Crohns disease

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    From drugs to diet and exercise, and then worms

    I’m a 32 year old female with an extensive history of moderate to severe ulcerative colitis / indeterminate Crohn's disease over 20 years. I’ve had IBD since I was 8 and was diagnosed with it when I was 12. I have also had mild asthma and allergies all my life.

    At my worst, back in 2010, I was recommended to take Humira / Remicade due to severe illness that had put me out for about 2 years. Although I was on the verge of a total colectomy, I refused all medical interventions and focused on changing my diet and excersizing regularly. Then I ended up with a pregnancy which vastly improved my health but, 2 years after the birth, I began relapsing. I was in quite a lot of pain, with nausea, cramping, alternating diarrhea and constipation, and a lot of fatigue etc.

    It was April 2016 when I started my helminthic therapy journey, and three weeks after my first dose of hookworms (NA), I started to feel a positive difference. It’s been an upward trend ever since, but it took around 18 to 24 months to achieve full clinical remission. In 2018, I had my first colonoscopy for 6 years, and this showed that my disease was clinically absent at a cellular level.

    Managing my hookworm colony

    I have had issues with the amount of worms I dose with, as it seems that I can never tolerate more than 10 at a time. I did have one dose of 20, but that turned out to be a bad decision, and I had to mitigate the resulting nightmarish cramps with low dose prednisone. However, that dose of 20 NA did provide the most benefit, possibly because it was my second or third dose and it helped to boost my colony. I now take about 7-10 hookworm larvae every 3-4 months, depending on how I am feeling.

    Today, I am weaning off Immuran and have noticed that I do need more frequent doses of worms as opposed to before. In the beginning, I could go for 6 months between doses, but this time began shortening as I began weaning off the drug. Now, I dose roughly every 3-4 months because I start to get constipated if I don’t.

    I also occasionally take Visbiome probiotics, especially if something has irritated my intestines - usually as a result of food poisoning or the flu, both of which can have a temporary adverse effect on my colony, as can colonoscopy prep.

    After taking colon prep in 2018, I was beyond miserable with cramps and pain, to the extent that I thought I would never recover and might stay in an indefinite flare. Although it did eventually go away, it lasted for a good 3-6 months and I needed 2 hookworm doses to recover from it.

    Whenever I get the flu, my colony starts to suffer and I need to top it up with an extra dose at around the 3 month mark as opposed to 4-5 months. Also, whenever I take a dose after having JUST recovered from the flu, my lungs will be affected. This has now happened twice. The first time was in 2018, when I experienced breathing issues for a short time. Then, this year, I suffered from the most severe flu that I have ever experienced - or it may actually have been coronavirus. Two weeks after almost recovering, I took a top-up dose, developed bronchitis and ended up going to hospital due to the breathing issues. This was mitigated by a 5 day course of high-dose prednisone along with steroid inhalers, then worsened again as the 10th week post inoculation drew near, but then finally subsided as the 12 week mark approached.

    I’ll never ever give up my worms!

    Despite some of the issues that I have experienced while on NA, I would never ever give them up because of the benefits they have given me. They have changed my life for the better and allowed me to live my life to the fullest extent possible. “Life changing” is the only way to describe what they have done for me.

    I now grow my own hookworms using use Sarah’s very simple Harada-Mori incubtion method and, after only one initial failure, I have been very successful at this.

    I got lucky with my GI doctor because she has not judged my choices too harshly, and had actually enrolled me in an FMT (Fecal Microbiota Transplant) trial prior to me doing the worms. In the event, I didn't qualify for the trial, but I did end up doing FMT myself, in the USA, although I didn't see much benefit from this.

    While my doctor had advised caution when I told her about the worms, and she still thinks that they do nothing and that the improvements I’ve seen are all a coincidence, she is nevertheless curious and is generally more open- and research-minded than most doctors.

    By Saira, September 2020