There’s a parasite in my gut
What I did when I learned there were parasites living within me.
When my QML stool test results came back with the words Dientomoeba species DNA, it was a little scary to imagine what parasite species it actually may be (there are a few nasty varieties) . If I really want to know, a test is available to determine the actual parasite species, but at a cost over $400, I said no. Dientamoeba Fragilis (I am led to believe) is the name of the parasite living in my gut.
A nasty topic and not a fun experience. I don’t normally post this type of story on my blog – but it has been such an “interesting” couple of months, I thought by sharing my story, others may learn and maybe get to the facts more quickly than I seemed to be able to.
After many weeks of experiencing what I thought was irritable bowel syndrome (IBS), these were my symptoms (apologies for some of these descriptions).
- pains in the stomach after eating,
- cramp like sensations in the gut,
- flatulence ( the polite way of saying chronic gas);
- smelly stools
- 3+ movements a day.
I went to my GP to check what was going on? Why was I suddenly reacting to certain foods like this? Not having any obvious intolerances before hand.
After discussing the possibility of food intolerances, my GP gave me a small plastic jar and a QML sheet, suggesting I do a stool test in the not too distant future. What the? I have never done one of these in my life! Easy she said – just place a layer of glad wrap on the loo when you are ready to go and bing, easy access to your poo for your sample. Delightful I know – but had to be done and when you are in that situation, any tips for getting it over and done with as little fuss as possible, suited me.
I received a phone call from the GP’s office a few days later to say “the Doctor would like to see you about your results.” A four day wait – wondering what was it? How drastic could it be?
When my GP informed me in matter of fact terms: “you have a bug”, I admit this was not what I was expecting to hear!
A scientific description : from the Parasitology Training Manual Dientamoeba fragilis
I was pleased to have an answer to the pain, the cramps and the wind but how to eradicate this beastie? With antibiotics of course. My GP prescribed a 7 day course of flagyl (metreonide). Curious about this, I jumped onto Google and researched the name and came across this fabulous blog post: Nature Glow a Gut Full of Parasites which also led me to further information: info on parasites
I have no idea when or how the parasite entered my system – it is not necessarily from an overseas trip – although I had been to Bali in January, no matter, I had it and wanted to get rid of it.
Treatment plan 1.
- Flagyl for seven days.
The Pharmacist gave me a name brand that is stamped Metronide – Metronidazole Tablets BP (Flagyl). Its a course of 3 per day after food for 7 days – strictly no alcohol and a 4 page Fact sheet on the drug – YIKES!
My readings and blog posts to Natureglow, led me to discover Flagyl is not the recommended (best) treatment for this parasite. In fact Professor Tom Borody (Gastroenterologist) from the Centre for Infectious Diseases (Sydney) indicates multiple antibiotics to block the enzyme system seem to be the best treatment. But DEFINITELY NOT Flagyl. He believes Flagyl feeds the parasites and makes the condition worse.
GREAT – where does that leave me?
Unsure I rang my GP to question whether Flagyl was the best treatment? She suggested to stick to the Flagyl for 7 days, then start gut repair with some herbals (Co Stat twice a day, then Saccharomyces boulardii) twice a day for one month. Also introduce a Probiotic (1 daily with food.)
At the completion of the course of antibiotics and a follow up stool sample a few weeks later (I requested a follow up Stool test to determine if Flagyl worked or not). I received another call from my GP’s office – please come back. Why? I still have the bug!
Back to my GP and we have agreed on a different treatment protocol, which was recommended by others in my readings.
Treatment plan 2.
- Secnidazole 400 mg 3 times a day and Doxycycline 50mg 2 times per day: both for 10 days.
Secnidiazole is not on the PBS and has to be bought as a compound. A pre-warning to anyone wanting to try and obtain Secnidazole from any compounding pharmacy. I am in Brisbane and my compounding pharmacy has never heard of it. The larger compounding pharmacy in Wickham Terrace said they would have to order it in, it may take a few extra days. I ended up phoning the West Lindfield Pharmacy in Sydney, listed on the Centre for Digestive Diseases info sheet. They make it up for you and post. Cost $90 + $6 postage. The lady I spoke to said they are (possibly) the only pharmacy in Australia making it!
Despite the parasite being fairly common, I felt like I was talking about something new regarding this treatment plan. This pharmacist had never heard of this treatment or diagnosis this way.
So by blogging about my experience, with references to the very helpful sites, I hope if someone else wants to find out information in this area, they do not have to go through the hoops I did to get answers.
This course of antibiotics (protocol) can cause the following side effects: nausea; headaches; dizziness; itching; tiredness. Something to look forward to – plus absolutely no alcohol for the 10 days. Its also recommended to cut back on the sugar as parasites LOVE sugar (including fructose.)
I will remove the good stuff in my life for the course of the anti-biotics, in the hope of eradicating the dreaded parasite from my system. As with most antibiotics – my gut’s FLORA will be compromised and I will then follow a suggested program of how to repair the gut – but better to have beastie gone and my gut back to its full working capacity.
I have some concerns from further posts on Angela’s site:
I could not find any medical publication on the efficacy of tetracycline against D fragilis (looks like it has never been studied in large scale) so it’s hard to predict. According to clinical studies a good clearance rate (80-100%) was achieved with Paromomycin. My kids both cleared with Paromomycin. The Secnidazole and Doxy combo is said to be effective, unfortunately I did not clear. Metronidazole (Flagyl) has a clearance rate of about 70% according to medical literature.
D fragilis causes very many different symptoms in people and people seem to respond differently to treatments.
The group around Dr Stark in Sydney has published a fabulous review article in 2012 titled “Current treatment options for Dientamoeba fragilis infections” – Nagata et al, 2012, International Journal for Parasitology Drugs and Drugs Resistance, 2, 204-215.
They emphasise that none of the treatments has been tested on a large number of people yet and have called for further studies. As long as our doctors don’t take parasites seriously I doubt that these studies get any funding. The CDD protocols (Secnidazole & Doxycycline and others) are not mentioned in the article as I believe they have not been published in any peer reviewed journals (hence doctors are hesitant to prescribe it especially as Secnidazole is not on the PBS in Australia).
Just recently a Swedish group of scientists has found D fragilis in Pinworm eggs in 85% of 21 samples (Ogren et all, 2013). And I agree with you Angela, that this is really scary. I don’t think that Pinworms are taken seriously nor do Doctors take D. fragilis seriously. Where ever we go we are told that D fragilis is harmless. One doctor even told us that he did not consider us a problem as our child had no serious diarrhoea.
I took the Secnidazole and Doxy combo according to the CDD protocol and did not clear. It simply shows that the treatment option that helps 100% of patients has not been found yet. Unless someone will donate lots of money towards its research it will most likely never be found and we will all have to live with D fragilis in our guts one day. Hey- but as long as we all don’t get serious diarrhoea we will be fine (…??!!).
Angela’s time and communication has assisted many people suffering from this unpleasant bug – it just goes to show the value of sharing via a blog. And this recent post from Miffy to me (as I shared my doubts on the effectiveness of treatment 2):
Flagyl (Metronidazole) clears about 70% of cases according to studies so I assume the CDD combo is more effective than that. Secnidazole is a chemical relative to Metronidazole – it stays just much longer in your intestine and hence should be for more effective.
In case you fail the treatment you can go 2 ways about it:
1. consult a Infectious Disease specialist/ in your local hospital they use Paromomycin as a second line treatment and a combination of Iodoquinol and something (cannot remember) as a third line treatment
2. consult with the CDD: they also have second and third line treatments which are other combination of antibiotics (your doc can request the protocols from them). These combinations are just used by the CDD and have not been published in any scientific journals.
Fingers crossed I won’t have to go to treatment three and beastie is gone!
POST BLOG ENTRY UPDATE:
I am pleased to announce my follow-up stool test came back negative – it appears the second round of treatment has eradicated my uninvited guests and I will now embark on repair gut phase. Long winded post – my apologies, but anyone searching for answers in this area wants real-life experiences (I know I did!)
Good Luck everyone,