I read your blog post with significant interest as I have had similar but perhaps quite not so bad issues with a persistent case of Blastocystis Hominis that I picked up while bushwalking in Tasmania. Firstly I must say that I sympathise with you and particularly your young son and wish you all the very best and hope the problem is finally resolved.
Your post is very comprehensive and you are well researched on the matter. I might cover my experience and situation and ask your opinion on a few things.
January 2012 - Likely contracted parasite while bushwalking
August 2012 - After problems with fatigue (one half hour walk wound knock me around for days, couldn't work for more than a few hours at a time), irritable bowel (passing stool 3 or 4 times a day) and increased appetite, I was diagnosed with Blastocystis Hominis by GP - prescribed 4 tablets of Tinidazole.
September 2012 - Problems persisted - had a follow up test and still positive - prescribed 10 day course of Bactrim (Trimethoprim/sulfamethoxazole).
October 2012 - problems alleviated to some extent but I didn't feel completely normal - my system still didn't feel clear and still had problems with gas. Test was negative.
October - December 2012 - got back to a more normal lifestyle of vigourous exercise 3 times a week.
December 2012 - a long week at work tipped the body over the edge. Off my food for 4 days with a little nausea. Extremely fatigued. Slowly recovered.
January 2013 - Had some but not excessive amounts of alcohol and ended up collapsing and blacking out for a short time in a public place. None of that stuff for me while the parasite persists.
January 2013 - Tested positive again for Blastocystis. Referred to a specialist gastroenterologist.
February 2013 - Prescribed 3 drug treatment from the Centre for Digestive Diseases in Sydney (400 MG Secnidazole, 500 MG Diloxanide Furoate, 160MG/ 800 MG Trimethoprim/sulfamethoxazole). Drugs came from the Compounding Chemist. Pro-biotic (Ultra flora dysbiosis) came from Queensland. Went on the recommended diet of no carbohydrates, no dairy, no sugar, alcohol etc.
February / March 2013 - Took the drugs. Had some anti-biotic diarrhea during the 10 day trial but the worse of it began around 10 days after the end of the trial. This lasted for around 9 days. Ate mostly fruit, harder things came out undigested and this was unpleasant. This was in small part due to quiting the probiotic too early.
March - April 2013 - gut slowly recovered from drug trial. Could begin to eat things that required more digestion such as meat and fish after around 2 months.
April 2013 - could begin to walk briskly for an hour plus each day. With symptoms persisting I had the 3 day parasite test and sent to Histopath in Sydney. Came back negative
Current (June 2013) - Still suffering some fatigue, particularly first thing after waking up. It seems to dissipate once awake. Have a little joint stiffness. Irritable bowel persists and passing stool generally twice a day. Occasionally have sensitive gums. Appetite is normal. Better than I was 12 months ago but not 100% and doing the things I want to do.
Despite the negative tests, I still feel on the occasional night where I can't get to sleep I have something inside me. Parasites seem to thrive on a fatigued body and my gut seems to make a lot of noise when this happens.
I like your theory that the parasite embeds itself in the intestine. I have to admit I'm not convinced of oral antibiotics as a frontline treatment for Blastocystis and don't want to do it again if I can avoid. But it seemed to give me negative results.
You seem to suggest that it seems to take the body months at a minimum and maybe much longer to recover both from the antibiotics wiping out your gut flora but also the effect the parasite has had on your gut flora prior to that.
To be honest I'm not sure whether I have a small amount of parasite left that's embedded in my intestine (maybe Blastocystis in Cyst form??) or I have post-infective irritable bowel syndrome. Time will tell I suppose.
The statistics you raise on the post-infective irritable bowel syndrome are interesting. Where did you see this? I'm skeptical of medical statistics I have to admit. I feel that they tend to be overestimates and often are based on limited data. My key questions to you are:
- Did you feel the intra-colonic infusion of antibiotics was more effective that the orally induced antibiotics?
- On your post-infective irritable bowel syndrome, did you feel that the low FODMAP diet was in any way effective?
- Are alternative therapies in any way useful?
Your case seems worse than mine as I've never suffered any pain or loss of appetite save a short time. I'd be interested to know your thoughts. I feel like the medical profession really let us down on these parasites for many decades. Understanding appears to be improving but knowledge really needs to filter down to the General Practitioner level where understanding is weak. But their doesn't appear to be that much research into these parasites going on, with the Centre for Digestive Diseases apparently the only place in Australia.
All the best for you and your son and interested to know your thoughts.