Hi everyone, yes I do still exist! It’s been a long time since I posted on my blog… nearly a year actually. I see my last post is of Easter photos from 2016 and we are about to celebrate Easter in a couple of weeks. You might have wondered what happened to me. Well other than the normal busy life of a mum and wife, I’ve been very sick.
It took a very long time to work out what the issue was and what was making me feel so horrible. Well actually that’s not true exactly, we worked it out very quickly (once I finally got to a dr and stopped thinking that it was just a “bug going around”) but unfortunately treating my illness was not quick at all.
After feeling nausea, fatigue and having massive gut issues… constant diarrhoea, which I kept putting down to bugs/virus from the kids my doctor noticed my significant weight loss while I was on a visit for Jasper’s needles. Being the wonderful doctor that she is, she questioned me about it. I had intended to go and see her in a couple of weeks if I wasn’t any better. Recently I had been told I had rotavirus and because of this I just thought I was still having symptoms of this… but really, how long can rotavirus last??
The first thing my doctor suggested was a stool test to get to the bottom of what was going on. Sure enough I got the call from her telling me they had found Dientamoeba fragilis, a parasite that lives in the large intestine. While some people experience no symptoms others (like myself) become very sick. After a round of antibiotics I was still having symptoms. That’s when my doctor suggested further investigation to rule out other possible disease, such as crohn’s disease. I was recommended to see a gastroenterologist for a colonoscopy and gastroscopy. At this point I think it’s best to mention that bowel prep is the most awful thing I think I’ve ever experienced. No one could possibly warn you enough about how bad it is going to be, I’ve never spent so much time sitting on a toilet in my life! The procedure itself is fine, after you are so very hungry and have a sore throat but it’s probably the best sleep I’ve had in a while. I felt like telling the nurse to go away when she woke me, I could have caught up on all the lost sleep from raising babies!
In conjunction with this the gastroenterologist also did more stool samples and various tests. She checked once again for the parasite. Results were back and the colonoscopy and gastroscopy were all clear. Good news was there was nothing major wrong, bad news… I was still sick. Would you believe the parasite was still present in my system! I’d just been put through the torture of the procedures and the awful bowel prep for no good reason!
What to do next? More antibiotics for me! A stronger round of medication that could only be found at a compound chemist in Sydney. Very expensive and a list of side effects as long as my arm! So much so that these made me feel worse than I was. 10 days on these, feeling horrible, still chasing after 3 kids and doing school drop off/pick ups etc. All while remaining out of the sunlight thanks to the antibiotics, feeling nausea and generally just yuck. I finish up the medication with hope that the parasite was finally out of my body only to now experience dizzy spells, heart racing, shaking. I can only assume this was from finishing the round of medication. Finally this all settled down.
Did this mean that I was better? Apparently not! Next I would have to deal with thrush thanks to the imbalance from the medication. After treating that I found that I was still suffering symptoms. I got so bad that I couldn’t eat a piece of toast and have a cup of tea without having to run to the toilet. Food was going straight through me. My mental state was worsening. I was feeling hopeless. I didn’t think there would ever be a state of “normal” in my life again. I had a fear of vomiting and diarrhoea, the very thought of my kids getting sick made me anxious and nervous. I’d had more than my fair share and I just couldn’t take the idea of any more. I was still having constant diarrhoea just from eating.
I was desperate for answers. The treatment of the parasite and the method for discovery had left my gut stripped of all the good bacteria which meant that I was left with many food intolerances. Discovering these would be the next journey I would go on. I can track the start of the parasite back to before Christmas 2015, it was now September 2016. Such a long journey of being unwell daily made me quite depressed. Diet was the next thing I had to explore. Somehow I had to repair the damage done and the way to do this was by looking at everything I was eating.
Go go google fingers.. desperate for answers I started googling and trying to find what I should and should not be eating to help my gut repair. Of course there was plenty of contradicting information but I was willing to give anything a try. At the moment I had loose stools every single meal, I was still dropping weight… now down to 50kgs. Nothing was staying in my system at all. After a lot of research I decided that I would cut all red meat, potatoes, tomatoes, and for the rest follow a FODMAP diet (cutting out gluten, dairy and other fruits and vegetables). It doesn’t leave you with much, but as I said I was willing to give anything a go as I was desperate. When I first started out this process I was scared that I would be told that I would have to give up gluten and dairy. I thought there would be no way I would be able to do that. But when you have no choice, you find a way!
My next post will be about diet and the changes I’ve had to make, and where I am at with it all today.
My daughter is pregnant and just found out she has this parasite. I’m trying to find info for her on the dangers of it while pregnant.
That could be very tricky! I know the antibiotics that I had to take in the long run to remove the parasite from my system would not be something you could take while pregnant. Heck I don’t even think I should have been breastfeeding! She may have no other choice than to look at natural methods. So sorry to hear that she is dealing with this.
I’ve beat this one. Best protocol is:
Doxy and paromamycin for 10 days
Cut out sugar, alcohol, grains and dairy for the 10 days
Take probiotic Saccharomyces boulardii and something like intestimine to heal your tummy
Good luck.
Also for the aftermath you are suffering, from the antibiotics. This may take time to heal but stay away from grains, sugar, dairy and alcohol. Best to eat cooked food for a while to take the load off your digestive system
Pre and probiotics will help repopulate your gut.
I have just been diagnosed with this after 5 years of suffering looking back I think I picked it up on holiday in turkey.
Thank you for this informative post, I have a 4 month old and he has got this!!! He has been diarhoea for two weeks non stop. I don’t know what to do as the doocyots have said to wait it out and continue to breastfeed. I’m not sure if he got it from me as I was violently ill the same time he had started having diarhoea
I am currently battling this parasite as well for almost a year! I have done two rounds of Flagyl, but still test positive for the parasite and still have symptoms…I am down to 105 pounds. I am waiting to see an Infectious Diseases Specialist at the hospital to find out next steps…just wondering if you know the name of the medication that finally eradicated the parasite for you? I have changed my diet drastically and that definitely helps, but I’d like to kick this parasite for good!!
I know you posted this a while ago but thought I would reply just in case. I don’t believe the parasite was eradicated for me by the antibiotics, over the last two weeks I’ve been trying DE (Diatomaceous Earth) to see if it will help. I really believe that it is helping me. I’ve been feeling much better and symptom free. I’m taking this once a day and also having my probiotic (ultrabiotic 500) at night and feel so much better. I am also still eating as per the FODMAP diet. Having been affected by this parasite for a few years now I totally understand your need to get rid of it. It’s a horrible thing to deal with. Perhaps research Diatomaceous Earth and its effects on D.Flagyl. I also feel like a lot of damage was done by taking the antibiotics which will take time to heal and get back to normal, hence why I’m remaining on the diet as well. I hope you find an answer! Mel.
Thanks Sarah for your comment. It’s a year on and I’ve had many issues fighting this. But I think I’ve finally found something to help. The the antibiotics really did was ruin my gut health and cause problems and I don’t believe they every truly got rid of the parasite. I had changed my diet but was still feeling sick, also added in a probiotic and still not improving. I believe that Diatomaceous Earth is helping me now, more than anything else had. I really feel that it is the answer to this. Thanks again for your advice. Cheers Mel.