I’m now 41, I live in New Zealand, and my health had been a problem since my teens.
When I was around 16, I was given a diagnosis of irritable bowel syndrome (IBS), which was later changed to ulcerative colitis (UC), and then finally confirmed as Crohn’s disease when I was 20. Sweet syndrome, which is related to Crohn’s disease, was added to my diagnosis when I was 37.
Disability, pain, medication, and a recurring threat of surgery
By my early 20’s, I was on a moderate/high level of medication - a constant 12 weekly infliximab (Remicade) infusion, methotrexate, azathioprine, mesalamine (Asacol) and prednisone, in addition to trying multiple other medications that didn’t help.
When I was 39, I was urgently flown back to New Zealand from Vanuatu, where I’d been on business, and admitted to hospital with extreme symptoms of Sweet syndrome and Crohn’s disease. I had non-contagious lesions on my arms, legs and face, and my left ankle had become so swollen it had no flex at all and I couldn’t put any weight on it.
Then I lost the use of my arms, legs and all my joints, which was horribly frightening. It came on over a matter of days, from slight pain to completely no feeling or movement. Going from having a coffee and not being able to stand up afterwards, my legs turned to concrete. The pain started moving down my arms till I woke up one morning and couldn’t move. My skin was so sensitive that even clothes hurt when they touched it, and running water when I tried to shower was excruciating. On top of this, my bowel wasn’t functioning and I had lost most of the feeling there as well. I had basically given up at this stage and wanted to die. When the doctors in Vanuatu wanted to amputate my foot from fear of infection, I flew home to New Zealand.
The ambulance staff gave me a fentanyl patch (25mg) under one arm, but after 2 hours I still couldn’t stand and I had to get off the gurney and into a wheelchair to get on the plane to leave Vanuatu, so they gave me a second 25mg fentanyl patch. After this, I got the feeling back in my arms and legs and managed to get into the wheelchair but, by the time the 3-hour flight landed in New Zealand, I was so overdosed from the extreme amount of Fentanyl in my system that I just kept passing out.
After 2 weeks in hospital and trying every antibiotic they could give me, plus 60mg of prednisone daily and 20mg morphine 3 times a day, they had no answers other than to suggest removing a chunk of bowel and giving me a permanent Ileostomy bag. I refused this and was discharged on a walker as I still couldn’t use my foot or any of my fingers due to now having rheumatoid arthritis in them all.
Two weeks after this, my bowel perforated while getting into bed, so back I went to hospital, where no medications were helping. When I was discharged a fortnight later, I still couldn’t walk and had been given no answers other than, "we need to take out your bowel"! They had very limited information on Sweet syndrome and couldn’t even tell me how I got it.
This cycle then continued with 2 further admissions with bowel incontinence, blood, mucus, extreme pain, sensitive skin and arthritic joints. I still couldn’t walk on my left foot and the lesions weren’t getting any better.
Anti-MAP (AMAT) therapy and helminth therapy
Eleven months later, I could walk about 200 meters if I was lucky and could get downstairs on my bottom. The lesions were getting better and my skin was no longer sensitive, but my ankle still had almost no flex, my bowel was still horrific and I had no strength in my hands. I couldn’t even use a pen to write.
They put me back on Remicade infusions every 12 weeks, with morphine 20mg x3 daily and prednisone 60mg daily, plus omeprazole 40mg, buscopan 10mg and Panadol, but none of it was helping, so I ended up seeing a leading gastroenterologist in Sydney who put me on Atypical Mycobacteria Antibiotic Therapy (AMAT) which specifically targets human paratuberculosis (MAP). This consisted of rifabutin, tinidazole, vancomycin HCL, clofazimine, metrogyl and vitamin D.
This helped for about 6 months and a colonoscopy confirmed my bowel had gone from black to pink with lesions. While I still needed surgery, the improvement shocked my specialist in New Zealand. But I couldn’t stay on this treatment because I was taking nearly 30 pills a day and had started getting side effects. So, I stopped, and so did my improvements.
In January 2021, aged 38, I could walk with a limp, but not far. I still had incontinence issues and a lot of pain, abscesses, rheumatoid arthritis in all my joints so I couldn’t sit comfortably and preferred to lie down where possible. And that’s when I began helminth therapy using the human hookworm, Necator americanus (NA).
I started with 3NA on January 4th 2021 and had a "bounce" 2 days later. It was a nice change to feel good for a moment, but it passed after 4 days and life went on as normal with me spending 8 hours straight not being able to leave the bathroom and, if I did, I’d be back an hour later until sunrise. I was still on prednisone 60mg daily, 20mg morphine x3 daily and Panadol every 6 hours.
Increasingly positive progress
Three weeks after starting NA, and not having been able to live independently for 2 years because of pain with my hands, back and legs, or being capable of walking more than 800m, I decided to move to Auckland 4 hours away from my family home and get my life back, or at least what I could. No one really thought I would move, or that I would even be capable of it at this point, but I was determined, even though I still had pain, which was sometimes extreme, and I couldn’t leave my bed or the bathroom.
On my 2nd dose of 3 NA, 10 weeks later, I was getting a few days each month with slightly less pain. Blood and mucus had slowed nearly to a stop, my lesions were fading scars, and my blood work was coming back into alignment. But I was still a long way off feeling amazing.
After my 3rd dose of NA 10 weeks later (5NA this time), I was decreasing my prednisone, nearly off the morphine and using Panadol instead, and I was having a lot more good days. I still had a limp, but the arthritis in my joints had gone completely, I was standing for longer periods and had days where I felt almost human again. My CRP had gone from 6000+ down to 50 and my blood work was all in range.
Another dose of 5 NA 10 weeks later, and I was feeling good. No more 8-hour stints in the bathroom. My bowel movements were almost normal, the pain was gone, and I had started actively trying to do a little walking outside. My CRP was now 1. Yes 1, with perfect blood work!
I was lucky that I started with low doses, which meant that I didn’t get any side effects from the NA. I only increased from 3 to 5 NA from my 3rd dose onwards and stayed on 6 NA every 10 weeks after that. I’m now currently pushing this dose out to 13 weeks and will continue to increase the interval further. And I won’t ever give them up.
One year and six months in, I would say that I’m now 98% better than the day I started. I’m on no medication, I have no pain and I run daily, although it has taken a long time to build up strength in my ankle to get to this point. I eat anything, though I’m currently on a diet to lose the weight I gained over 2 years of basically no movement, and I’m nearly 20kg lighter. I find if I drink alcohol, I notice arthritis pain in my elbow and fingers in the following days, so that’s the remaining 2% to fix.
Advocating for helminth therapy
If you’re thinking about trying helminth therapy, figure out first which species is going to be best, not only for your symptoms but also for what you’re comfortable with financially. And consider whether you prefer to swallow doses or apply them via a patch on your skin overnight, because this all varies across the 4 different species.
Do your research, but don’t hold off. The sooner you start, the sooner you will improve. It may be slow, but all improvement is good. Don’t let other people sway your thinking. Everyone will have an opinion and, until they see results for themselves, they may be a little negative, but they all come round when you start improving.
I didn’t tell my GP because I didn’t feel she would understand, but my Gastro specialist, who knew I hadn’t been taking any medications for nearly a year, could see my improvement, and you can’t deny what you see in front of you. He was supportive and asked loads of questions.
I get asked some strange things when people hear my story, like “Do the worms crawl out your bum when you do poo’s?” “Can I catch them from you?” and “Will they multiply and eat you alive from the inside?” And the answer to all of these questions is NO. LOL!
Some people will look at you like you’re crazy but my basic response is, “helminths lower inflammation in your body, your symptoms subside and you improve." It’s very simple. There’s obviously really more to it than that, but this seems to do the trick and makes sense.
I wish I had found helminth therapy 20 years earlier. If I had, my life would have been less focused on my illness and hospital appointments and more on enjoyment, but I’m making up for it now. NA literally saved my life.
By Michelle Robinson, July 2023.