jenn jay tales

Jennifer Johnston shares her travel tales; life adventures; observations, photos and random thoughts

Parasite in my gut

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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.

Some background:

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

 

Dientomoeba Fragilis

Dientomoeba Fragilis – hmmmm really?

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

 

bad Bugs.org  and a scientific paper by Dr Stark at St Vincents Hopsital

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.
Parasite in my stomach

Antibiotic combination for treatment round two.

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:

From Miffy:

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,

Jenn

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Author: Jenn Jay

JennJayTales was created as a place to share my writing. I share random blogs about activities of interest to me and maybe to you. Writing is a passion and there is nothing I enjoy more than meeting people and capturing their stories through my observations and words. As TRAVEL is a huge passion of mine, I've created a travel blog http://travelbugwithin.com.au/ Please enjoy Jenn Jay Tales and if you consider my writing style as something your magazine, book, blog, on-line publication, website or business may be interested in, please let me know - I'm keen to write for you. Email me at jennjaytales@optusnet.com.au

118 thoughts on “Parasite in my gut

  1. So glad it is out of your system Jenny Jay! Congratulations 🙂 What are you taking to repair your gut? And what diet? What did you find best eating while you had it? Thanks, Cec

    • HI Cec, Thank-you! I am taking a pro-biotic and diet whilst on the antibiotics was to cut back on sugar and dairy. I eradicated milk completely and had a lactose free yoghurt occasionally as I love my yoghurt!

  2. How long after medication did your stools get back to normal. I have more energy but still loose stools after finishing 14 day Paromomycin 7 days ago.
    Maggie
    P.S I live in Texas USA do you know if pharmacy’s carry Secidazole and Doxycycline?

    • HI Maggie – sorry I live in Australia so can’t comment if S and D are carried in Pharmacies over there and we could not access Paromomycin on the Australian Health system so my treatment was different – but they seemed to have returned to normal after a few weeks after the course of treatment finished. I would say you would have to go into gut repair stage now and hope that your stools come back to more normal in a week or so. If not go back to your Doctor.

  3. Hi Jenn Thanks for your blog about D.Fragilis Did you have any bad side effects taking these two drugs – have just been diagnosed with the parasite and most prescription drugs make me feel awful. I’m so inspired you were able to get rid of it !
    I am currently going to a naturopath, but wonder if it is the best treatment for it. I live in Perth Australia

    • I have to admit I did not have any side affects from the drugs – apart from taking its toll on my gut which is why I went into gut repair mode at the completion of the course of antibiotics. I am not sure a naturopath can actually clear you of the bug – they can give you post treatment repair treatment. I don’t often suffer from side affects from medication but you on the other hand may if you usually suffer. It did take a few attempts to get rid of the D Fragillis – mainly through allowing my GP to get me to take a course of antibiotics that would make me less nauseous (but did not work.)

      I am trying to be careful with what I eat – not as good as some people who have posted they eat all organic, no starch and no sugar (that is not me!) Just make sure you ask questions of your Doctor if you go to one and get on to the recommended treatment if you go down that path – from what Angela and others have posted on this site. Very helpful and accurate information. I wish you well in removing it. Jenn

  4. Hi Jenn,
    Thanks for your post. Our family is going through a similar experience with our 11 yo son. He has been sick with abdominal pain for almost 6 months, but only diagnosed with df about 6 weeks ago. I’m also interested to know how long it took for your symptoms to settle. He finished the same 2 antibiotics 2 and a half weeks ago but he’s still having abdominal pain. The drugs seemed to aggravate his symptoms. There has since been a slight improvement but not sure if it will just take more time for everything to settle down. The waiting is driving us a little crazy! Just curious how long it took for things to settle for you, and was it overnight (which I have heard can happen) or over a period of time?

    • HI Tracey – sorry have not checked my comment box for a while. For me it did not settle down immediately – took about two weeks after course of treatment and then about another three months for my gut to settle back to where it was. I am not sure with a child how long they will take – but if he has been unwell for that long i hope he sees improvement soon.

  5. Hello Jenn,
    I too am in Brisbane I and my 4 yr old have Dientamoeba 😦 how why when questions as to how we got this Bug is unknown.

    Did each of your sons get tested for the bug ‘beastie’ if so what treatment did they have if they were positive?

    What products do you use to repair your gut flora?

    • Hi Vanessa – no idea either where mine found me! I have not had my sons tested although it probably would be a good idea although they at this stage do not seem to show any symptoms. I was recommended some naturopathic remedies to repair my gut flora which took about 3 months and included a good pro biotic. Let me look through my records to find what info i can on these that were recommended. Stick to the course of treatment recommended in Angela’s posts (similar to mine) although not sure what you can do with the 4 yo – will require milder dose. Naturopath recommended gut restoration (straight from her list): Saccharomyces boulardii (SB Pro?) 2 twice a day with food for one month; Probiotic – 1 twice a day with food; gut relief powder 3/4 teaspoon twice a day with food ( I found myself with a fair amount of “wind.” she also wrote down Ibergast (flordis) but I did not take this.

      Good luck – you will get past this. Jenn.

    • Hi Vanessa. I am in Brisbane and my 5 year old daughter has dientamoeba and has constant pain. I am so confused about what to do. All doctors say give her Flagyl and look at me like I have two heads when I adk about alternatives. What treatment did you follow with your little one? Was it successful?

      • Hi Jo, my son had DF recently and I was able to find a doctor at Logan who helped us. Let me know if you want more help

  6. Thanks for sharing! I have been hosting D. Fragillis for quite a few years. I was originally diagnosed with IBS three years ago. I have developed Chronic Fatigue, nausea, alternating from constipation and diarrhoea, depression and anxiety. And I would be wealthy if I was given a dollar for every time I complained of having a sore stomach. I also suffer from reflux but I’m unsure if this is related. I made the brave decision of taking meds for the depression and anxiety. This then lead me to question the reflux and asked the doctor for more tests. After doing a stool test, D. Fragillis was finally found. Weirdly that was the first time I did a stool test, but I’ve had every other imaginable test from colonoscopy, endoscopy. I even saw a Cardiologist for heart palpitations. Anyway I was given Flagyl for 7 days, and then repeated for another 7 days when the diarrhoea was still present. I did another stool test to find I was still positive for D. Fragillis. I have just started 10 days of secidazole and doxycycline. Wish me luck!!! Interestingly I crave sugar. I will quit sugar so I’m not feeding those micro bugs I have been hosting for far too long. Hoping this dose of meds works!!!

    • Whoops I forgot to tick to be notified for follow up comments : )

      • Hi Julie

        How did you go on secnidazole and doxycycline?

        I’m in the USA desperately trying to source secnidazole.

        I was on metronidazole (flagyl) for 20 days and it hasn’t worked. I have a prescription for a round of tenizadole and doxycycline for ten days but I’m reluctant to fill it as I’m worried it won’t work!

      • Please notify me of response 😊

    • Julie you have been through a great deal – i truly hope this course of treatment is successful and gives you some relief from some of your symptoms. Fingers crossed for you. Yes Flagyl was a fail for me too!

      jenn

  7. This is such an interesting post – thank you for sharing it. A stool test found that I was carrying Dientamoeba fragilis, and I was prescribed a 10 day course of Flagyl (which made me feel dreadful – but I persevered). Since finishing the Flagyl about 3 or 4 weeks ago, I’ve been stuck with oral thrush which is proving very difficult to eradicate too. I insisted on a follow-up stool sample test last week as I was sure that the Dientamoeba symptoms had returned. I’ve just got home from the doctor’s now….and the test results confirm that it’s still there 😦
    My doctor was quite insistent today that this bug doesn’t cause any gut symptoms in people, and that is isn’t responsible for the pain and bowel problems I’ve had (I’ve been previously diagnosed with IBS many years ago)… although I was just as insistent that I want the bug eradicated. He was hesitant to treat it, but has given me a script for 7 days of Doryx – 1 per day. I have to give up on trying to get rid of the oral thrush for now, as the Doryx is apparently going to allow that to take over again.
    I was just reading online that studies have been done with Secnidazole as a treatment – with good results…so I’ll be interested to see how this has worked for others.
    Thanks again for sharing your post Jenn… stay well 🙂

    • Well Lea – good luck with the new course. I think Doctors need to start questioning the effectiveness of Flagyl – it seems it doesn’t work for many people – but its a nasty antibiotic and we have to take it for 7-10 days. whats its doing to our guts in that time? Also not knowing your circumstances but if if you are not happy with your Doctor’s recommended course of treatment, get a second opinion. Hope things start improving for you.

      Jenn

  8. Hi Jenn,
    I’ve just stumbled across your blog and can relate so very much. We are in Brisbane as well and our whole family has been dealing with D. Flagilis for most of the year. My GP (somewhat reluctantly) and myself have been dealing with CDD in Sydney and are now on 2nd line treatment for my 4 year old son. After speaking around, I’m actually finding LOADS of families in Brisbane going through the same thing…& time and time again, GPs advising either not to treat or to use Flagyl, which seems to have such a high failure rate. I’ve heard of so many people in similar situations recently that it makes me somewhat question a lot of things like water supply etc. (other parasites like cryptosporidium & giardia were found in the Sydney water supply a while ago so stranger things have happened!) or perhaps this nasty little bug is spread far more easily & in more ways than we think. I am desperate to be rid of these horrors for my son in particular so am crossing my fingers and toes this time around!
    Thanks for sharing your story. Gives hope to know that one day we might have a happy ending!
    MK

    • MK – it is not good that there are so many cases – and i agree questions to be asked. Flagyl is not a good treatment idea from my experience and yours it seems – hope all comes good soon – and remember it will take up to 3 months for the gut to settle once the parasite is not showing up in results. Jenn

  9. Hi, thanks for the blog entry and everyones comments, very useful.
    I have just found out I have D Fragilis and B Hominis.. Its been a long time coming, I have struggled for years with GI issues, the past year in particular has been awful. Finally good to know but I’m not sure how to go about treating it..

    My doctor has prescribed the following:
    2 weeks of Flagyl 3xdaily
    10 days of Bactrim 1xdaily
    A herbal antiparasitic Parex Plus – 1 month
    A biofilm disruptor – 1 month
    Heaps of probiotics! Plus S. Boullardi and Cranberry tabs to combat potential yeast overgrowth.
    I make kefir and have sauerkraut so will be dosing up on those too.

    She mentioned the CDD approach but inferred that it was very expensive and that I should try the above first. From reading blogs like this, I’m worried that the Flagyl will increase resistance and make it harder to get rid of. I havent heard anyone mention that they took herbals and biofilm disruptors at the same time though.. so perhaps this could be effective..?
    Any thoughts would be great! Extremely excited to get rid of these bad guys!!

    • HI Jess, everything I was read about and what I found was the probiotics will not help whilst you are taking the antibiotics. Kill the bugs first then build up your good flora (which the antibiotics will harm). As my blog says the Flagyl did not work for me – but that is your and your doctor’s call. The Bactrim I am guessing is for worms? The kefir and saurerkraut I heard will help (fermenting products) the others I have not heard of. I feel for you if you have been feeling unwell for over a year. I hope your treatment works and be prepared it may take up to three months before you will feel better and your stools return to “normal” I am not an expert, just sharing what happened to me.

      Jenn

  10. Hi Jenn,

    Thanks for your reply. Yes, I think I have probably had one for about ten years and then picked up the other last year when things started getting really bad. I now cant eat anything without bloating and discomfort, so I’m definitely looking forward to the next few months 🙂 The Bactrim isnt for worms, I think its supposed to kill the bacteria in the gut that the parasites eat. Removing the biofilm means they have no mucous lining to protect them and the Parex is just one more layer of attack for any left that are potentially resistant to the Flagyl. Fingers crossed!

    Just a note.. taking probiotics during a course of antibiotics helps deal with the side effects.. here is a great article about it from Chris Kresser http://chriskresser.com/what-to-do-if-you-need-to-take-antibiotics

    Thanks!
    Jess

  11. Jess the bloating and discomfort is no fun! It seems you have been given good info and this article re the probiotics makes sense. I will keep my fingers crossed for you that it all works out and you are feeling healthier and renewed by Christmas time. Thanks for sharing your knowledge too – that’s what helps people who want to know more.
    Jenn

  12. Hi. Apologies for all the length of my comment.

    My family and I (in Brisbane) have been treated for Dientamoeba Fragilis (4 members) and Blastocyctis Hominis (2 members) for the past 11 months. Numerous rounds of Flagyl, Metronidazole, Secnidazole and Doxycycline have not worked. We have recently followed the Centre for Digestive Diseases first line of recommendations, and now have only Dientamoeba (3 members). My youngest has managed to eliminate her body of DF with Flagyl twice. Aside from her age, the only difference I have perhaps attributed this to, is that she is not yet immunised, and has better gut bacteria.

    Queensland Urban Utilities have tested the water from our house, however they can only test for contaminants within an acceptable range. Queensland Health do not provide QUU with tests directly for DF or BH. This to me seems like the most logical thing to do at present. One doctor suggests that farms in the Lockyer Valley (and elsewhere) are being sprayed with untreated raw effluent fertiliser – perhaps the parasites come from here? Worms have been discussed as

    I had an appointment with the Infectious Diseases Department at the Royal Women’s Hospital yesterday (11 Dec), and they wish to investigate my symptoms further, as I have no diarrhoea, though numerous other health complaints and have been tested for all manner of things, with negative results. The hospital are considering prescribing paromomycin after testing my blood and stools in-house (not via a pathology lab). I requested referral to the Royal via a GP, and saw a doctor within two months of that referral, which I am told is rather a quick result.

    I am very concerned about the fact that there are so many people with DF and BH in Queensland (and possibly beyond) and I am most concerned that we stumbled upon our diagnosis of parasite infection by chance. I noticed my daughter had worms one evening, and my doctor at the time suggested identifying whether Combantrim would eliminate the parasite. Numerous friends in our community have also tested positive and have a range of health concerns that have not been linked to any other diseases they have been tested for, such as constipation, food intolerances, weight loss, new allergies, malabsorption of nutrients, poor concentration, impaired memory and more.

    From this blogs comments, and from my story shared in our community, it would seem that this is widespread, however very few doctors are recommending PCR Multiplex Faecal tests, and even fewer appear to know how to best treat it. How many people are infected? GPs need better training to identify the range of symptoms and assist the public.

    I have had communication with the Metro North Brisbane Public Health Unit and I shall to continue to pursue this matter. If you are willing to be interviewed by the Brisbane Public Health Unit, please contact me via email with your name, contact phone number and suburb – h.susannah@gmail.com. In return you have my assurance that I will share your contact details only with Metro North Brisbane Public Health Unit, and I will keep you updated with how my investigations progress. At present, I have confidentially provided contact details for eight individuals to the Public Health Unit, the majority of whom have additional family members suffering either DF, BH or both.

    I am determined to apply adequate pressure to the health system to find the source of these parasites. I am determined to ensure there is public access to an adequate and easily available cure to eliminate these parasites from our bodies. I am seeking assistance to ensure that GPs are better trained to assist people with these complaints and symptoms. I am determined to encourage adequate funding to further research and understand DF and BH. Please help me help us.

    • Hi
      Thanks for your info, I admire your determination to see something done about DF. I would be interested to hear if you have had any success??
      I live in Northern Victoria and my 3 children and I have had DF for a few years, though I was only diagnosed recently. I have been treated with Doxycyline and Flagyl (separately), both unsuccessful. Infact, I would say treatment has stirred things up even more in my guts. I am now being treated with Albendazole (for any other parasites that may be there??). I am not sure what treatment will follow for DF, but have asked Dr to follow up with CDD for guidance. I would love to know where we have ‘caught’ it from… If only the medical profession took it seriously enough to research thoroughly.
      Thanks

      • Anita apart from sharing this blog post nothing more has been done by myself to spread the word about DF. Seems that a few people (maybe too many) have suffered through this and you are correct ins asking – is there enough being done about it? Where have we caught it from? No one is really sure. As you say for there to be answers research is required.

  13. Hi jenn

    I would love you to email me your doctor name I’m in brisbane also and my doctor keeps giving flagyl to me and my 2 kids. I got a second opinion and that doctor said we don’t need to be treated. And told me to stop using Google to look at treatments. We are all very symptomatic and I need to get rid of these bugs 🙂 thank you

    • Hi Kez I have emailed you directly the details. Hope you get some resolution sometime soon. Highly frustrating. Jen

      • Hello Jen

        Would you be so kind as to share your GPs details with me too. I’m also in Brisbane.

        Many thanks
        Tania

    • Hi Kez, I too have had a child with DF and found a fantastic, albeit expensive doctor that has helped many people and is doing extensive research. He follows the Centre of Digestive Diseases recommendations and we have had success ridding our selfs of the this awful parasite.

      • Hi Jo

        Can you give me the details of your doctor? I’m desperate to access secnidazole and cannot find a doctor to prescribe it.

        Many many thanks

      • Hi Jo! could you please give me the name of your GP who helped your son treat DF! (Just like Sarah above I am desperate to get help). Was it successfull with CDD protocol?

        Thank you,
        Marina

      • The doctors name is Doctor Greg Emerson he is in logan central and his phone number is 3339 7910. He has a lot of information about DF and was very helpful. My son is now free of the parasite. Good luck with it all, it is a very hard journey when you cant fix the problem. Jo

  14. Very interested to read of the experiences here, especially of yours Jenn as I am on a similar journey. I was advised I had DF earlier this year. My most obvious symptom was abdominal discomfort initially on the right flank but has now moved to be more on the left above the pelvis (I have since realized that this is either end of the colon). I also had soft floating stools that were a little more frequent and lots of gas. Initially I was given flagyl (metreonide) for 7days which temporarially improved my stools for a few days after the course and reduced the discomfort on the left side of my abdoman, but it did not last. Next I was given one dose of 4 tablets of Tinidazole. That gave me diarrhea and left me not feeling very well for about a week. Finally improved when I took some Paracea Forte herbal capsules. About 4 weeks ago, I began 10 days of paromomycin. While I did get some diarrhea about half way through, by the end my stools were much better reasonably formed and sinking to the bottom of the bowl (although not as good as pre DF) and I also had less gas. The abdominal ache was stil there though, mainly on the left side, particulary before a bowel movement. It is now 2 weeks since I finished the course and I seem to be where I was when I finished the paromomycin with some improvement in my stools, but still having the regular abdominal discomfort. I will have a stool test soon, but I am thinking either the DF is not completely gone or maybe I also have blastocystis hominis (I am not sure if they tested for that previously) which is apparently harder to get rid of. If the paromomycin has not eliminated whatever I have, then I am not sure another round of the same will help. I am thinking of giving the Secnidazole & Doxycycline a go if I am still infected

    • Hi David,
      You seem to be on a path of tablets and hopefully are heading in a positive direction. With the passing of time since you write this post maybe you have had another stool test which showed better results? I hope the abdominal ache has gone – I am not sure about blastocystis hominis – that sounds another challenge for you if it is. I hope all goes well for you. Jenn.

      • Just thought I would give an update. The results of my stool test came back negative, so the good news is I have hopefully eliminated the DF. On the down side, I still have abdominal discomfort which the specialist says is IBS. I am booked in for a colonoscopy to check for any other causes, but otherwise looks like I am stuck with managing the IBS. I have started on the FODMAPS diet which seems to help a bit and kind of struck a chord in that I was struggling to find a consistant trigger that made my condition worse, but the idea that it could be the combined load of certain foods, some of which were not obvious made sense. Interestingly the FODMAPS diet also involves eliminating some of the things I had been loading up with to battle the DF like garlic, onion, pistsios and raw honey.

      • Hi David well that is a good outcome but tempered with the IBS symptoms continuing. I have been following the Fodmaps diet for over a year now and feel it has made a big difference to me. Not sure why you were loading up on garlic and onion etc to help battle with the DF – maybe you read somewhere to do this? I hope it all starts to settle down and your colonoscopy gets the all clear. At least that process will clear everything out and you can start afresh (pardon the pun!) Jenn

      • It has been over 6 months since my last post, but I thought I would post an update as I found reading other people experiences helpful in my journey. It has been a long and gradual process with ups and downs, but I am at last feeling almost normal and in control of my health. I mention this because I recall in in some of my darker days wondering if I was ever going to get better or whether I would have to live with my symptoms for life, which was quite depressing so if you are taking a long time to recover after clearing DF, take a long view and hopefully your condition will improve. In my case, I think initially taking to wrong antibiotics, may have done as much harm as the DF itself. What I think helped most was the FODMAPS diet and taking a strong Probiotic called Probiotica that includes strains that specifically target my issues. I also took a supplement called Ibergast that may have helped with the symptoms.

        BTW, I originally was loading up on garlic, onion as when it was initially suggested that I might have a parasite, I was thinking along the lines of tape worm for which these are supposed to help

    • Hi David,

      Very interesting to read you post and about your symptoms. I’ve had a lot of stomach pain (quite severe at times), pain on the left side above pelvis, bloating, nausea, gas, lose bowel etc etc and I went to my GP on Tuseday to find out that I’ve got high numbers of blastocysts hominis. I thought it was interesting to hear that someone else have had pain on the left lower stomach because I had put it down to left ovary issue, which it could still be I guess. My doctor is very good so she gave me an anti parasite agent; nitazoxanide to take for 10days along with Parex plus (but I’m gonna go with Paracea forte from bioceuticals because I’ve heard good things and can get it cheaper). After that I’m suppose to start heaps of probiotics and functional foods which I’m getting from Poliquin group mainly.. It’ll be very interesting to see how it all goes. I’ve felt absolute shit so it can only get better from here 🙂 Amazing how small little parasites can affect your health hey!! Thanks for sharing your story!

      • HI Fanny – the feeling yuk is the worst part – seems you have a good Doctor and are onto the path of recovery. Yes they buggers those little critters- they can mess you up as people reading this can attest!

  15. Hi Jenn,

    Firstly, thank you for you fabulous blog, without reading about your experiences and other peoples, I feel that I would have no reliable information about DF. My 10 year old was recently diagnosed with Dientamoeba and as per previous comments, my doctor said, I see this diagnosis about 3 times a week, and it is nothing to worry about. We had all the blood test, ultra scans etc done for appendix as he would get cramping and burning in the stomach and bowel, sweeting, shaking, headaches, nausea etc. However, everything came back normal except DF in the stool sample. She said, basically that is all I can do for you. Well after doing a massive amount of research on the internet, (and 3 weeks off school for the 10 year old), I rang the doctor and asked her to prescribe something for the DF. Of course she prescribed Flagyl. When I got home and researched the drug, I came across thousands of reasons not to give it to him, least of all the fact that it did not work to eradicate the bug.
    I too am from Brisbane and saw the post from MK…interesting, there is also a site on facebook that I found Brisbane Northside Mums that is also discussing this problem with their children. Anyway I changed my doctor and armed with all my research, I went for another 15min appt. This time I was prescribed Doxycycline. I am researching this antibiotic at the moment to see if indeed it will help get rid of the dreaded DF. I am sure the first doctor I saw started to suspect that the 10year of was trying to get out of school, however she did not see him curled on the couch, writhing in agony crying after he had just eaten something.
    It really makes me mad to see the amount of doctors who are turning a blind eye to this parasite and the distress it is causing the patient and their carers. Can you please give me the name of the antibiotics that you took and also the doctors details in Brisbane. thanks heaps

    Jo

    • HI Jo I hope you have found some respite for your son and his symptoms have settled. As mums we tend to know when something is not right and if this doctor is not giving you the treatment or answers you think will assist – then find another. I can DM you my GP’s details as you are in Brisbane. This post of mine written so long ago seems to be viewed often which says there is a problem out there. I was happy to share as I had a blog and I was frustrated by my experience. I listed the antibiotics i was given on the post so if you go back they will be in there – but these may not be best for a child.

      It seems momentum is occurring as more people question what is going on. Don’t stop until you are satisfied the parasite has gone and your son returns to “normal” behaviour!
      Jenn

  16. Hey Jenn Jay thank you so much for this post, I have been to a doctor and they said i had parasite called blasto something, I have done two lots of antibiotics now, the bugs are suppose to be gone. my question is during the three months it took to recover, where u still getting the cramp\pain in your stomach? I find my stomach is still extreamly sensitive I cant even have softdrink because It would make it worse And i still get a lot of gas sounds\pain in my lower stomach and sometimes in my lower back. It has been about a Month since the antibiotics.

    • It took a good 3 – 4 months to restore my “gut” to a comfortable state. Make sure you follow a good restoration program Mitch as the good “flora” in your gut will have been damaged! I am not a therapist or confess to knowing much – just being through it meant I wanted to share what happened to me and this is one of my most read blog posts! I hope your stomach improves in time Mitch.

      Jenn

  17. Also I have been given Anti Spasmatic medication, its suppose to ease the pain of the cramps but only works to a small extent

  18. Hi and thanks for your blog. My 5 year old 2 year old and I all have dfragilis and have all been treated with Flagyl. I tested my son about 3-4 weeks after and it was negative, however 3 weeks on im positive it was a false reading. It took a 6 month journey to find out what was wrong with my son he has reacting to foods developing allergies and was not himself and he started bed wetting every night.
    After his Flagyl he stopped bedwetting but has started wetting again we are on our 9th day straight. My daughter and I are yet to be tested again but going to do it this week. Again after I finished Flagyl this shoulder pain I have had for 8 months was pretty much gone for about 3 weeks but in the last 4 days is back worse then before :(.
    It seems like so many people have this and all the people I have told to get tested have it to.
    When we finally get rid of this im worried that its just going to be picked up again as it seems its everywhere . I have recently been told to chuck out all our water bottle s baby bottle s as it could re infect then is it that easily spread ? Ahhhhh I just want it gone 😦

    • Hi Taryn, I also had a child with the dreaded DF. I got relief from a Doctor called Greg Emerson at Logan Central. He is rather expensive and the drugs have to be compounded by a pharmacy in NSW and they are also expensive. Also my son had problems taking the capsules and we could not break them because they tasted disgusting. However, with the drugs we did take he was able to rid himself of the parasite. There is not alot known about this parasite and the Centre for Digestive Diseases in Sydney are doing alot of research and changing up the drugs, but most of the run of the mill medical doctors at medical centres, know nothing more than Flagyl.

      • HI Jo – this is good. I am pretty sure my compound drugs also came from a pharmacy in NSW (by memory!) Great that the CDD in Sydney is doing further research. Just by the comments on this (one) blog post – there are many people suffering. Keep the conversataions going. Jenn

      • It takes about 1 year to get repair /restore biofilm in our digestive tracts after FLAGYL it is harsh.

    • Hello I could not help my self But to reply to you I too had DF last year was treated 3 X FLAGYL and the first line and second line treatment via CDD in Sydney through dr Gary deed in Corparoo.
      To find out in March this year I had it return or still in my system no one really knows. I did more research and stumbled over a German therapy called Bioresonance and it has transformed me and -no drugs-which kill all good flora in your body … Please research I saw a therapist in Manly QLD Melanie Young. Please research I went back to check with the dr/PCR test and all clear 🙂

      • That is good news Vanessa – and thanks for sharing your experience. And if it takes one year to repair our digestive tracts its worth trying to prevent damaging them where possible.

        Jenn

      • Hi Vanessa, thanks for sharing (and thanks Jenn for making a post about her experience 🙂 ). Just wondering how long were you doing Bioresonance treatment for? Did it help to improve immune system?

        It actually helps a lot knowing that there are people who got rid of the parasite!!! I am in Melbourne, moved from Russia 5 years ago and for the last decade have been told I had IBS. I was eating healthy and been up to date with diets for IBS. In the last four months stomach got really bad (so as my mental state as I can’t really eat, food intolerances, lost weigh, gut aches) and took me a lot to finally get the right diagnosis – I got both BH and DF and they have to be treated with Doryx + Flagyl both together for 10 days. I am super sensitive to some drugs due to blood pressure issues so I am unsure whether I will be able to finish the antibiotics. I know those parasites can’t be cured through natural therapy, i.e. herbs etc……What a bug!

      • What a bug indeed Vanessa. I know herbals can’t eradicate the bug – but they can help restore your gut after. I hope you make it through the course so you can start to feel better soon.Jenn

      • Hi Vanessa I am looking at doing bioresonance therapy to rid myself of a stubborn case of blasto. I have tried the 1st line and 2nd line CDD triple ABx treatments but with no success, and feel this parasite is big aspect of my poor health (CFS) that I have had for many years.
        Bioresonance is not that cheap – How many treatments did you have to eradicate it?
        I am not sure if you had DF or BH. I was told 5-6 treatments are needed.
        Were you able to tell within the first or second session that it was working for you?

  19. Taryn – I know how you feel – you just want it gone, Sadly it is prevalent and can return. I have no idea how easily it is spread nor where it originates. I don’t know how my kids avoided it – but hopefully with treatment your kids are turning the corner. Maybe your son has reacted to the flagyl? I am not sure what is causing your shoulder pain but it wouldn’t be the parasites? Would it?

    I hope you have some positive results with all your efforts.

    Jenn

    • Bioresonance cleared my parasite (Drs failed to acknowledge it) and through the whole treatment of several weeks expensive $$$ I was skeptical.
      I saw my GP requested a stool PCR test x3 ( to be sure).i did this twice 6 stool samples back 1set to one pathology and another to another pathologist. CLEAR
      My body could not take another Antibiotic. It will take your body at least 1 year to repair the biofilm in your gut just from taking FLAGYL it is bad news.
      I’m not sure where your’re located in Melbourne but there is a bio res therapist in Kew ( that’s where I grew up). It’s a slow recovery but look after yourself good nutrients rest Please let me how you are going take care.

      • Flagyl is indeed nasty! and it is a challenge to know what to do – try to eradicate the parasite and knowing you will harm your flora (biofilm of your gut) – or live with the parasite. Finally for me – a few years on i am happy that i persevered and removed the parasite. An individual choice!

  20. Hi i hope you can answer me and help me out. I was recently diagnosed with diet amoeba fragilis my only symptoms were minor nothing too serious and no fever for a about a year. My doc prescribed me with flagyl 3xs a day for 10 days. I also had an amazing diet during that time while eating parasite fighting foods like raw garlic honey green onions pumpkin seeds. I felt great while on the antibiotics and i finished them 2 days ago. Right when i was done my course sum symptoms returned right away. Im so confused does that mean the meds didnt work? Am i experiencing parasite die off symtpoms? Or do i have to simply wait and give time for my stomach to heal and re adjust it self and have normal bowel movements again? Btw i am a 27 year old male very healthy do not smoke occasionally drink work out/ cardio 3 days a week and i work in a huge banquet hall so when i work i literally walk anywhere from 5 to 7 miles during that day. As you can c i love health and to be healthy thats what makes me happy so im trying hard to fight this parasite. Thank u so much waiting anxiously for your reply

    • Hello Niko, I am not a health specialist, so I am sorry but i won’t be able to answer your questions. This post was about what i experienced. If you read my post i found FLAGYL did NOT work for me. I had to try a different course of medication and you may be the same. You will need to be tested to determine if the parasite is in fact still in your body. Once you have done the appropriate testing to work out whether you have eradicated it or not, then you may want to approach your doctor to ask for either different medication or something to repair your gut’s flora which may have been damaged after the antibiotics.

      • Thanks for ur reply i have an appointment with my doc this Thursday. When u were done ur 2nd treatment ur symptoms did not disappear right away correct? How long did it take for u to really c a difference? Even tho mine still linger for now but i think i am getting progressively better each day thanks again for ur time i really appreciate it

  21. Hi sorry if im reposting again i cant seem to find my old post ill try to recreate it as best as i can i really hope u can answer me and help me out. I recently got diagnosed with diet amoeba fragilis i think ive had it for about a year. my symptoms were pretty mild nothing too serious just excess and weird bowel movements and lots if trapped gas but no fever and very little weight loss even tho i changed my diet from healthy to super healthy ( cut out alot of red meats no pizza or fast foods no chocolate no dairy unless it kefir and probiotic friendly and any fats i need i get from almonds nuts avacados omega oils virgin oil etc). My doc prescribed me with flagyl 3xs a day for 10 days. While i was on antibiotics i felt great felt like a normal person except for the last few days on it i had sum stomach discomfort. While on them i also kept an amazing diet and ate parasite fighting foods like garlic raw honey green onions pumpkin seeds etc. I finished my meds two days ago and will go for a retest in a couple of weeks. Right when i got off the meds i started to get sum symtpoms back like excess and weird bowel movements im very confused. Does this mean the meds didnt work? Am i experiencing parasite die off symtpoms? Or do i just have to give my gut sum time to go back normal? Btw im a 27 year old male very healthy do not smoke do not do drugs occasionally drink and i work out 4 days a week. Also i work at a huge banquet hall for a hotel so when im working im literally walking anywhere from 5 to 7 miles a day no joke. Ive aways been very healthy and a very happy person no stomach issues wutsoever and i just wanna fight off this parasite and go back to living a normal happy life again. Waiting for ur reply thank u so much for any help u can provide and i hope uve been symptom free cuz i kno how bad this bug can irritate a person.

    • Hello Niko – i did not feel better for another three months – you need to repair your “gut” once the parasite has gone! Hopefully the Doctor can test you to confirm you have eradicated the parasites and you can get on with restoring your gut’s flora – as the antibiotics kill a lot of the good flora. Good luck.

      • I will!! U gave me alot of hope misunderstand the situation first time with a health problem like this thought i would be close to brand new after anti biotics course thanks again and again ill keep u posted thru this website and pass on any info for anyone who is suffering from these annoying parasites. Have a wonderful day

      • Hi Jen – I’m desperately trying to seek secnidazole in the USA. Does anyone know where to find it?

        Niko I would be interested to see where you ended up, did you try another course of antibiotics after flagyl?

      • HI Sarah – sorry can’t help you in the US of A – I’m in Australia and our pharmaceutical rules and terminology varies. Can you google any info over there for stockists and people’s experiences?

        Jenn

    • Hi niko

      After finishing my flagyl about three days ago in feeling awful again and wondering if it didn’t work or whether the parasite is dying off, exactly the same as you.

      Can you please let be know how you ended up?

      Kind regards
      Sarah

  22. I would say that if you’ve got DF / BH, forget herbal therapies and antibiotics, just go for Bio-resonance. Our son had it a few years back, and 5 treatments got rid of it. But, when he had it, I must have picked it up, and then the whole family (except for the wife) ended up with the parasites. So back to bio resonance, 5 treatments for the kids, 8 for me, and now we’re all parasite free. I haven’t had the stool testing done this time as yet (did it last time to confirm it was gone for our son), but all our symptoms are gone. i.e. no more loose stools, sore stomachs, grumpy kids etc.

    As weird as bio-resonance seems, it really works. All you have to do is sit / lie down for a short while with a metal plate on your stomach (which is of course hooked up to the bicom machine).

    • Mr Mike can you give some more details , of the number of session that you need , and how will you now when to stop and the parasite is gone. thanks so much. Thanks

      • Ho Joao, I put the number of sessions we had in my earlier post. It’s going to vary person to person depending on how bad the infection is, but I’d say less than 10. The bio resonance prac will be able to tell you when the parasites are gone, the machine can be used for this. You can also get a genetic stool test to confirm the parasite is gone.

  23. Hi there, it was great reading through these posts. I’ve been infected with DF for the last two years. I’m lucky I think it that my main symptom is urgency to “go” every morning after breakfast and usually rather loose motions, some days I can have 4 motions, but that is only once or twice a week. I’ve lost some weight, but as I was only 43kgs anyway, a few kilos less is rather startling and noticeable. My doctor did as many have said here, flagyl. Nothing. Then we did flagyl and doxcy. Nothing. They said that DF maybe a co-inhabiting bug without symptoms. Anyway, lately I’ve really recognised my weight loss is not good and I really must get onto it. So I’m off to the doctor next week to tell him a I want to try the secnidazole and doxcy regime as it does seem to be the most widely regulated and regimented. I looked into Iodoquinol and Paromycin, can get hold of both, but quite expensive. Also read some alarming facts re Iodoquinol which is why it’s hard to get. And Paromycin seemed vague in the regime. So, I’m pleased to hear of some success here. But I would love some info on the diets you followed while taking the medication and also on the best method of healing the gut and repopulating it with good stuff. Do it during, or after? What foods should I avoid? Please post lots of ideas. I still can’t get over how many people have this bug and the problems it causes, why do we have to do the research and tell our doctors what to do? Btw….,.anywone want info on where to get the drugs and also of a gastroenterologist in Melbourne that does work on DF please ask. Cheers.

    • HI there – it it is now getting to be a few years ago i had the bug – so to try and recall what i did after to repair my gut is getting a little vague! Because i have so many responses from this post i will try and recall what i did and do a follow up post – for what worked for me. I do recall avoid sugary products during the treatment as the bugs like to love on those kind of foods (apparently). And also don’t follow the repair the gut stage until it has been confirmed you have eradicated the bug from your system.

      Jenn

      • Thank you, I have read that the probiotics are likely to be killed by the antibiotics too, so that makes sense. I wondered if the candida diets might be a starting point. But, I’ll await your reply. Are you still bug free?

  24. Hi Mycrazykat – yes I am still bug free.

    • Hi Jenn – while you were on your second antivmbiotics treatment did you follow a strict diet? What did you cut out? Thank you!

      • Hi Sarah – it was recommended to me to cut down on sugary food – which I tried to do. Hard as I am a bit of a sweet tooth. I will look back on the notes I made at the time and write any info down i have to answer some of the questions about afterwards. Again i will say: this is just my experience – please do not take it as a scientific model or anything.

        Jenn

  25. The attempts I made last year to have DF infections taken more seriously have had no success at all. My doctor is convinced that my low nutrient levels and inability to absorb iron is directly related to DF. Infectious Diseases staff wasted three hours of our life at Lady Cilento, resulting in my son being told they don’t do anything for children with DF, stating these things tend to clear up (though could give no reasons why, or how we might encourage this to happen). So why were we there by appointment to discuss DF, by referral? The hospital specialist did not even bother to see us and related this via a locum after patiently waiting for three hours. My son now suffers similar symptoms to me and takes Movicol daily. All three of us continue to test positive and have been told by RBW Infectious Diseases staff that it’s likely that 50% of the population have DF, they don’t know how its transferred (likely to be with Pin Worm egg) and to stop being tested as they believe it is likely the “too sensitive” tests are detecting the DNA of past infections. Why then does my daughter test negative when she succeeds with her treatments? Why does anyone who has eradicated their system of DF test negative? I’ve been referred to a gastroenterologist at RBW, whose only ‘diagnosis’ of my symptoms, is IBS – the diagnosis with no real diagnosis. Following a low FOD maps diet helps and eliminating garlic and onion makes a big difference to the bloating and abdominal pain I have experienced for years. Im reticent to take the next line of CDD recommended drugs, as the antibiotics may have caused the IBS. I’m going to try seeing a bio resonance therapist. The sceptic in me is willing to give it a try, simply as so many have and seem to have had success. I’ll be our family guinea pig and decide from my treatment whether to proceed for the rest of the family.

  26. My 6 and 9 year old have just been diagnosed. Does anyone know the treatment for children?
    Many thanks.

  27. hey sorry i havent been checking up on this blog i have been very busy with work and getting my life back on track. i have good news for everyone its been two months since ive finished my course of antibiotics for DF and have been getting better and better with each passing week. i kno alot of doctors and GI specialists dont recognize DF as a pathogen but i am living proof that i got leaps better after i finished my antibiotics and even tho i have sum set backs here and there im on the road to recovery. obviously to add to this well made blog u have to first make sure that the parasite is eradicated so that u may begin recovering ur gut. i will write everything that i did hoping that i can help someone or their kids and families since i kno how frustrating this bug can be so plz excuse my long sentences with no punctuation marks and point like sentences since i am writing this from my work. while i was on my antibiotics i made sure i ate parasite fighting foods which include papaya seeds carrot juice cabbage juice sunflower seeds pumpking seeds wormwood honey fresh cloves of garlic lots of greens veggies and fruits ( i kno sugars in fruits might react wrong with sum ppl especially in this situation but i need my fruit smoothies with protein powder after my gym sessions 🙂 and lots of water to flush out all toxins. i also cut out dairy while i was on the antibiotics and did not reintroduce dairy untill i got rid of DF.

    once u get the news that the son of a bug is gone then u can move on to healing ur gut. i kno alot of ppl will say take a probiotic supplement but personally i hate pills and meds. so instead i made sure that i ate foods with good probiotics which include greek yogurt kefir milk kefir water coconut oils sauerkrauts pickles tempeh and so on and so forth. also u have to exercise whether its a walk a jog or weight lifting do not just sit at home and heal get moving and get busy and get back to living a normal life. in addition to that i take glutamine after my gym sessions which helps heal and rebuild my muscles but some of u might not kno this glutamine also heals the gut lining that has been injured due to the infection. one thing my mom introduced me too were herbal teas. she started making me ginger teas green teas and kombucha teas which really helped me out as well. one main thing u have to keep in mind that i didnt do in the beginning is u have to be extremely patient and optimistic to overcome this. good energy goes a long way to healing the body and no amount of foods or meds can replace that. i majored in health science and kin so from wut i kno about the body…there is no way it wont go back to normal if u help it heal the right way. plz if u have any questions ask and i promise i will come back every now and then to check up and answer questions i am not back to a 100 percent normal but there is no doubt in my mind that i will get there one way or another sooner or later( i am about 85 to 90 percent healed after two months and still have set backs so u can understand that it will take while for ur gut to resume its normal routine.)

    P.S i am not a doctor plz dont take my methods as sure ways i am just writing from my experience in hopes that i am able to help ppl. so plz talk to ur family doctors before attempting anything out of ur daily diets or routines.

    best of regards and good luck to everyone god bless u all.

    • Thanks Niko for sharing your outcome and what worked for you. It is great to read you are almost there. I hope you continue to feel better and get back to your 100% healthy self soon.

      • Thank u so much really appreciate that. How about u? R u still symptom free? R u back to being 100 %? Also thanks again for ur blog u have no idea how many ppl it probably helped ❤️

      • Hi Niko, My apologies – I missed your comment. I am feeling really great thank-you. I am glad my blog helps to start a conversation – I wanted to share what happened with me, in the hope that others may find the information useful and at least have a few reference points. I hope that you too are feeling healthier and almost back to 100%. Jenn

  28. Hi Jen, I have suffering from B. Hominis for over 9 weeks now and have not taken any antibiotics due to the fact I was weak and had a long term medical condition before I got this parasite and didn’t like the look of the side effects when I read up on what my doctor had prescribed. I tried diatomaceous earth for 10 days with no effect. I notice no one else on this post has mentioned it. I then tried paracea forte at the highest recommended dose and that seems to have failed as well. My question is that it appears these types of parasites can’t be cured my natural means? Have I been lead astray being told these two treatments should work? I’ve lost 7kgs. I’m on hydralyte to keep me hydrated. Had cold sores break out all through the IN side of my mouth. I have been totally bed ridden for most of the last 7 weeks, have to run to the bathroom at least 6- 12 times a day. I have been so weak I have often thought about going to hospital and have friends taking care of a lot of my house work and meal preparation. Have others actually been this sick? I have had a host of other “to-unplesant-to-mention” things happen as well. I’m at my wit’s end to be honest. I don’t know if the medicine is working and I’m in the die off zone or I’ve just wasted a lot of time and money taking what I thought was the healthiest route for my body’s sake. I know your post isn’t for B. Hominis but the same antibiotics seem to be used to treat both. Not only am I afraid of the side effects and damage strong antibiotics do to our health, I wonder about developing a resistance to the drugs and then beong able to staying clear of it in the future. Any thoughts anyone? Oh I’m Sydney’s Northwest and there are many suffering from parasities in the area.

    • Hi Vicki, I am happy to share your comment in the hope that someone may be able to share something similar that happened to them (maybe?) It does sound terrible what you are going through and have no idea what to recommend. You have probably used the internet to try and find answers. In my situation i found that it was only antibiotics that helped treat my particular parasite.

      That is way too long to be unwell and to be so weak at the same time. I hope you find somewhere to go to receive some help and get back to the healthy state you desire. Jenn

  29. Hi Jenn,

    I too was diagnosed with being infected with the Dientomoeba Fragilis bug, and was too prescribed Flygal, after which I waited 2 weeks before going on another course for 7 days…I was then tested a week after finishing the 2nd course and still tested positive. I then came across your post and asked a doctor whether I couldn’t try the 1) Secnidazole 400 mg 3 times a day and 2) Doxycycline 50mg 2 times per day cocktail. So I’m now on it, and really hoping things clear up… I’ve suffered from intensive itching on my feet and hands, and it’s been unbearable – I’ve had all blood tests done and nothing wrong with kidneys, liver, etc. I’m normal weight, etc. and only after requesting the stool test did they come across my infection… I’m really holding thumbs that this parasite has been the cause of my problem that I’ve lived with for years and I can finally get my life back.

    Thank you so much for sharing your information

    • I hope you get the resolution you are after Craig, the intense itching on hands and feet does not sound like something you want to continue experiencing. I know this was not a symptom for me – but you never know everyone reacts differently.

  30. Hi Jenn, I am only just coming across your blog now! Well done. I’m so glad you came through the other end and can share your success here. Thanks for mentioning my blog post – much appreciated! – Angela

    • Angela – your blog and comments helped me greatly – so I’m just sharing my experience in the hope it may assist others – obviously no medical advice – just what I experienced! Nice to hear from you. Jenn

  31. Glad you got rid of it eventually.its so wrong how doctors just give the weakest amount of antis and think it’s ok even when they know it may not work!thats what causes resistance!they should give us maximum time treatments and combo treatment with the strongest meds that actually work.
    Anyways just found out my daughter and my family and my self all have this parasite.what drugs were the exact treatment protocol that cured you?sorry if I missed it but I’m not sure if it was the doxy and the secnidazole?you said there was another medication as well?i have a bad memory and I have thumping head aches so i can’t focus.
    Please help,I have a very weak immunity and it’s making my life hell.i am covered in a rash and soooo itchy!i have all symptoms badddd and so does my daughter except she doesn’t have the rash like myself.
    Any help will be so appreciated.
    Thanks in advance
    God bless
    Bec

    • HI Bec, Sorry to read of your suffering and that you are covered in a rash. I’m not sure what that is but I know my symptoms with the parasite did not include a rash? It was so long ago now you would have to check my blog post for the drugs and treatment protocol I undertook. I can only share my experience not advise you what to do. I’m not a medical practitioner. I hope you can seek the support you need.Jenn

  32. Hi Jenn,
    I’ve had the exact same symptoms you describe for about 5 years now (since I drank some water in Bali), I’ve had multiple stool tests done but never over consecutive days. They have all come back negative but I am positive that I have a nasty parasite that is causing all of this. I am also in Australia and I am just wondering exactly which stool test you had done? Or whether you might even know a doctor in Melbourne that might be able to write a referral to a pathologist and instruct that stool samples be taken over 3 days and put in a fixative? Parasites are really not a fun thing to have!
    Cheers
    Julie

    • Hello Julie – oh five years sounds way too long to be living with something that is preventing you from feeling healthy. My stool test was done via QML – and it was a one off not over consecutive days. I don’t think I will have the paperwork that would tell me what stool test it was for. Maybe if you are looking for a Dr. in Melbourne you could go to the place in Sydnet and ask them to refer you to someone?

      Parasites are definitely not fun when they cause you discomfort and a sense of not feeling “healthy.” Sorry I can’t be more helpful Julie.

      Jenn

      • Hi Jenn,

        Thanks so much for your reply. Yeah, five years is definitely too long, I guess it’s crept up on me and gotten worse and worse as the years have gone on. Yes, I was thinking of calling the Centre for Digestive Disorders tomorrow, so I’ll definitely do that and see whether they can refer me to a doctor in Melbourne and maybe even tell me which stool test I need to ask for. You have been very helpful actually! Just having someone talk about these things on a blog is a great source of information and I am sure you have already helped so many people by having this avenue for discussion 🙂

        Cheers,
        Julie

      • Hi Julie, I hope the Centre for Digestive Disorders can help you. I’m happy my blog post has possibly helped – I only wrote it due to the frustration of my experience! It certainly has created a place to discuss, which goes to show there is an issue out there in this area and not enough information available. I hope you find the right support.

        Jenn

  33. Hi Jenn, I live on the Gold Coast and was diagnosed with D Fragilis in November last year, my doctor also said to leave it and symptoms got worse, abd cramping, constipation, headaches however brain fog was the worst, anyway she put me on the combo of doxy and secnidazole after contacting the CDD, I had to stop doxy after 6 days, the side effects were intense, I have only 2 days left of the secnidazole but the side effects are getting worse, I just wondered has anyone else stopped the antibiotics early and still had success?
    Has anyone contacted QLD health about the high prevelance of cases in SE QLD?? There seems to be far too many people presenting with this condition? Please feel free to email me if anyone wants to discuss this

    • Hi Carly, sorry i did not see your comment earlier. I hope you have had success with treating the parasite in the couple of months that have passed since you posted this comment. I don’t know whether stopping the antibiotics early would help or not – maybe others can comment here? There does seem to be a high prevalence of cases around Australia – whether there seem to be more in SE Qld is difficult to comment without supporting evidence.

      It is no fun to live with that I do know. The side effects of the antibiotics are different for everyone too – I was not adversely affected – but others – including you Carly say they have been.

      I hope you are recovering.

      Jenn

  34. Thankyou for sharing this. Yesterday I was diagnosed and prescribed metronidazole. Your story has given me lots of information.

    • Hi Cassie,

      I’m glad this blog post has presented info to you. There is an abundance out there – my experience is but one! I hope you are feeling better and are beating this parasite.

      Jenn

  35. Hi Jenn, I need some hope. My husband, 5 year old daughter and I have been diagnosed with this awful parasite, in fact half our small town has) We have been sick for about 2 months now with bloating, nausea, abdominal pain, heartburn, burping, fatigue… Well actually my daughter is coping much better than my husband and I. We started taking the medication the same as you from the compounding chemist in Sydney, however my daughter is to young and had to be treated with Flagyl. My husband has been coping well but I felt a little nauseous on the medication but thought I was coping quite well too until yesterday when I felt awful and then by the evening started vomiting every 20mins until about 2am, and am laying here right now still feeling sick. I called the compounding chemist in Sydney and they said that if it was the medication I would have felt sick on day 1-2 from a reaction or die off not on day 5. So more than likely Iv now picked up a gastro bug from the young kids I work with. Because Iv missed a few doses due to being sick I now have to start the 10 days all over again. I honestly can’t catch a break and am felling very helpless. Have you had anyone share an experience like that to the medication? I’m hoping it is just a gastro bug but already feel so run down I don’t know how I’m going to get passed it. Please tell me it gets better my kids need their mum back!

    • Oh no Leigh, you’ve had a bad run (pardon the words.) Wonder how half you small town got this parasite??? Damn that gastro bug making you start all over again. And who knows maybe the antibiotics and having the parasite means your immune system is low anyways? I don’t think anyone has shared being sick on the medication, but this post has been going on for over two years so there could be something earlier that I haven’t recalled.

      I will give you hope – it does get better – but it will take a few months. The run down feeling probably feels as though it will never end. Take heart – it does. And then you have to do what you can to “repair” your gut. I wish you well.

      Jenn

    • Hi Leigh, I get these posts because my son had the parasite too, and when I did my research, it took me to Jenn’s website, which finally gave me the answers. He missed a whole term of school because I could not get anyone to believe that this parasite was the problem . The doctors all kept on telling me that this parasite does not cause any problems in people. Anyway I eventually got onto a doctor who specialises in parasites and he got me the correct medicine through a compounding pharmacy in NSW and there was light at the end of the dark tunnel. However, I have noticed in the following year to come that Toms immunity has been very low and that he has picked up every bug going around school. I have put it down to the parasite. I am looking into a probiotic that will help him. I know that you feel there is not getting better from this, but I promise you, you will feel better and soon this will all just be a distant horrible memory. Hang in there.

      • Thank you for your kind words Jo, so glad your son is better. Think it does definitely take its toll on your immune system. I have made it through the 10 days of antibiotics my last day was Wednesday. I was actually feeling not too bad until Saturday when all the nausea, fatigue, tummy gurgling, frequency started all over again. I have felt so nauseous for 3 days now, it’s so debilitating. How long did it take for your son to get back to feeling normal? I thought the nausea and fatigue was behind me so feeling pretty miserable right at this minute, very frightened the antibiotics haven’t worked!

  36. Your information is extremely helpful.|

  37. Hi jenn,
    Thank you for writing this! I found your post very helpful. I’m currently at the end of my patience with Drs as My 13 year old daughter has been diagnosed with df. This has been ongoing since 18/10/16, it’s now 23/10/16 and we’re doing battle with Drs for help!
    She was diagnosed with this by dr #1 who after sample came back positive suggested worming and taking probiotics, as she didn’t want to destroy gut flora. Needless to say the exhaustion, nausea dizziness & complete inability to concentrate worsened. Finally got an appointment with her regular dr who gave her metronidazole. After completing the 10 day course her symptoms are still no better. Back to dr a couple of days later, he basically said she needs to just go back to school, and I quote “sometimes when you don’t do anything you just get used to that”…this is a child who loves school, so implying she’s being lazy or avoiding school has her in tears. I feel like I had to force blood tests to make sure they’re not missing anything else. She physically is so exhausted and has had enough of suffering from this that she’s in tears. This is a normally happy, active social smart girl who’s teachers have said to me it’s not like her at all, and one has told me to “go mumma bear on the Drs”.
    After getting nowhere and reading your blog I’m going to request referral to infectious disease specialist and see how we go.
    Thank you for giving me some information that actually helps, as Drs don’t seem to offer this information or either don’t know or can’t be bothered. Regards kir

    • Hello Kir,
      Seems like you have had the run around with doctors and your daughter is no better off. Find the Doctor that is willing to listen and treat her with effective ways to help remove the parasite.
      I know the run around you experienced and my GP was very pro active in the area. It doesn’t always pay to get on the internet – but sometimes it does if you’re not getting the help you need.

      I hope you find some resolution soon and your daughter can return to her normal energy levels.

      Jenn

      • Internet helps sometimes! Seems doing my own research is all I can do, and request dr look into the methods I find. What bothers me is that I feel as if I’m fighting the Drs to get help, the fact that there has been no mention of another stool sample to see if it’s still there is a worry. Definitely looks like it’s in the too hard basket for a lot of Drs. Simple call to Cdd would benefit not only patients but Drs themselves in understanding this. Thanks again for writing about this, and your followers for sharing their stories! 😄

  38. Hello. Glad to see this conversation. I’m in Brisbane too and had the D.fragilis infection (from pinworms!) with all accompanying symptoms. Dr here said that Flagyl was the recommended treatment but luckily I’d read enough online to know that wasn’t a good option. Ended up having to fly to Sydney to get my old Doctor there to write me the script for Secnidazole and Doxycylcine, as Secnidazole isn’t on the PBS and my Brisbane Dr couldn’t prescribe it. Glad to say the treatment worked, within a month of finishing the course I felt fully better, energy back etc. However my advice is to take plenty of Nilstat while on those heavy antibiotics and for a good while after to keep the candida in check. Plus a good strong multi-strain probiotic long-term… The CDD in Sydney is a great source of information.. I also found the website badbugs.com to be super helpful and confirmed that my symptoms were not imaginary! I feel sorry for all the people suffering with this infection and not getting the right help that’s available. Thanks for getting the word out… I tell anyone I know with gut problems to get their doctor to contact the CDD to get a list of tests to run and eventual treatment protocols. Sadly, most GPs are clueless about this particular bug so you have to be very pro-active!

    • HI Kate – that is great to read you have improved – thanks to your pro-action! Good suggestions re the Nilstat, I thankfully had no issues with candida – but others may. The CDD are the specialists in this area – but why aren’t the GP’s reading up on this? Anyways – thanks to the internet there are places to go to find answers (even though many Doctors cringe at the thought!)

      Jenn

      • Yes, I wish the GPs would get up to speed with all the info that’s available… I guess having a know-it-all patient doesn’t make their day, but hey! – The CDD treatment protocols for Blasto and Fragilis have been around for years, and with good statistical results. Very grateful for the internet!

  39. Really good article! We’re also in Brisbane… there seems to be a worrying trend here.

    I have been putting up with Dientamoeba fragilis for 2 years. Was diagnosed and treated twice with Flagyl. Currently all members of our family are in the last part of a very miserable treatment of Secnidazole, Diloxanide Furoate, Doxycycline and Bactrim as per the CDD guidance.

    It’s a VERY expensive treatment, especially for a family.

    Any suggestions if this treatment doesn’t work?

    • Thanks Alex. glad you liked my article. I’m sorry to hear your whole family is going through this exhausting (and expensive) treatment process. I hope you have the all clear when you are tested again. I have no idea what to do should the treatment not work as you are following the CDD guidelines. I guess if it doesn’t locate a GP that can help guide you more closely through it all. Sometimes the food you eat during the time on the antibiotics can assist the parasite rather than destroy it. I know that doesn’t sound like much, but my fingers are crossed for you all. Jenn

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