So Discouraged

So I’m at a crossroads. I’ve been using hookworms since Dec. 2007, with up and down results. I first tried 10 hookworms and was very sick; had an extreme reaction (fever, diarrhea, edema, arthritis) but that went away and I was so much better by month 4 it was a miracle. But I redosed in “trickle therapy” style which was 2 worms every week or every week, and I regressed. 

I found out I lost my worms months later, and reinfected with 10 more hookworms February 2008. This time, I had minimal side effects and had great effects, reaching normal CRP and was able to eat off my diet (SCD) which was a mistake probably. I started developing magnesium deficiencies and low iron; did iron shots and that caused weird nueropathic stuff (I didn’t know I was mag deficient then) and that was hard…

I did well for about 6 months Crohn’s wise, and was doing egg counts by then, started regressing and noticed my egg count was declining; I reinfected with 10 more hookworms 7 months after the last ones, and was back to normal CRP within 6 weeks. I got pregnant though, and had terrible deficiencies then, anxiety and insomnia, went on an SSRI and sleep medication, rode it out, had a misscarriage, lost a huge amount of blood and became iron deficient…but the Crohn’s was doing prettty well.

Pretty well was normal CRP and mostly normal blood, gained 25 pounds and was keeping it on, able to bike, exercise, I looked good. I finally figured out the magnesium issue and started a long road of shots, supplements, baths, etc. I’m still dealing with this issue.

I never stopped having rectal mucus, but was sleeping through the night and had mixed stools. This is where I think diet plays a role, since I was eating most anything.

About 6 months after the last infection, I started regressing again, and my egg count was going down. My cRP started to rise. I couldn’t access the worms until over 3 months later, and by then CRP had risen a lot and I had a lot of mucus and symptoms. I tried 15 hookworms, but with the existing inflammation and the quanitity of worms, things got bad at week 3 and I went on Prendisone temporarily. This worked great, and I had weaned off of them almost completely, was doing better by 9 weeks and decided to try TSO. The first dose caused about 3 days of worsening, the second dose 1 week, the 3rd dose caused severe worsening, and I had to go back on Prednisone.

And then my egg count dropped and I decided to add 10 more hookworms; this was November, 5 months after the previous dose, and I went through the extended side effects AGAIN, weaning off prednisone, and finally ended up with 3 small rectal abscesses . (Which I haven’t had for 23 years, and then, only once , when my Crohn’s presented.)

I reluctantly went on antibiotics (waiting too long and ending up in the hospital for 10 days): first Cipro and Flagyl IV, then 4 days of oral, then I switched to Augmentin for 6 weeks. At first, it was bad, but I upped my probiotics (VSL and s. boulardii) and finally, a month ago, I had solid stools and was feeling a lot better, mucus gone for once.

Amazingly, the worms survived the experience and I have the same egg count (600 epg) before and the last 2 times I’ve checked post antibioitc.

I had an MR endoscopy 2 weeks ago, which showed minor thickening in the rectum and sigmoid, but no fistulas and the abscesses were pretty much gone. CRP was back to normal. So I came off the antibiotics last Monday, started feeling nauseous on Saturday. Started GAPS diet (SCD but with lots more probitics, basically paleo at this point) but I’m still nauseous 5 days later and stools are getting looser, and more pain.

My doctor wants me to go back on antibiotics at least till I see him (this Tuesday) and to start Cimzia ASAP.

It’s been a really trying few years; I had such high hopes for the worms but think they contributed to the abscesses (and the TSO and prednisone).

I guess my plan at this point is try the Cimzia, see if it can buy me some time for me to get off antibiotics and for the worms to work, reinfect every 6 months, and see if my diet and probiotics can stretch the shots out so that I’m on diet and worms again. TT is in question now, but maybe on the Cimzia I could tolerate them better?

Any advise would be welcome.

 

  1. pw’s avatar

    Thank you for sharing the story with us. I would try antibiotics again (Cipro) until you get better, than follow with lots VSL#3 and stay on the diet. My doctor recommended ‘playing’ with the dosage and treatment duration of antibiotics. The reason is that you are not trying to fight any specific infection/bacteria, but just try to change the balance of the bacteria in your gut. There is no need to take it for the whole 1-2 weeks, stop as soon as you get better and try 1/4 or 1/2 of regular dosage. I think it is worth retrying the ‘antibiotics followed by probitics’ strategy as it worked for you before. Maybe the diet is not enough to keep your bacterial flora in a proper state? I hope you get better.

  2. admin’s avatar

    Trying this again. May have to do something like Cimzia to buy me time until the worms work again or I have enough worms/species to keep the immune system suppressed. Meanwhile, I’m hoping the diet slowly restores the digestive microbes. I’m toying with a fecal “transplant” to see if that helps implant the good bacteria, I’m thinking my daughter who has never had antibiotics would be a good choice. But would it help? Or hinder?

    I’m just so tired of choosing strategies. I now am committed to staying on a diet; paleo, GAPS, probiotics with every meal, etc. Worms, exercise, good supplementation , etc. But will it work? and what’s the right way to get there? How much trial and error can I take?

Reply

Your email address will not be published. Required fields are marked *