A gut-full of Parasites – my experience with Dientamoeba fragilis

This is a very icky post. I am revealing I have not done proper stools for about six months now due to hosting in my gut the parasite: Dientamoeba fragilis. How hideously gross, and importantly, dangerous to my health and potentially those around me!

Finally after suffering for months, I turned to a last resort – antibiotics. I’m still not sure if I am out of the woods yet, but thought I’d share on the topic as it seems to be far more common than we realise.

Before you think that I must have travelled to a less developed country, and only places like India and Africa have such things…. I tell you otherwise. I have not been to any other country since June last year (there is a case for it being in my system from then). I am not exactly sure where I contracted these foul buggers (the literature is not sure on the route of contraction, but most obvious is the feacal-oral route). My suspicions point to when I stayed with friends in the hinterland of the north coast of NSW in a cabin on their property which is infrequently used. We drank filtered water, but I showered, brushed teeth etc using tank water which hadn’t been flushed out in over six months. Interestingly, there is mounting evidence and personal experiences that threadworm (sometimes called pinworm) Enterobius vermicularis is the vector (infective agent or carrier) responsible for person to person spread. And anyone with little kids at school knows how common worms are!

More and more it is being discovered that being infected with parasites is no longer a problem of developing countries alone. Parasites could potentially be contracted from infected water supply in cities such as Sydney as is discussed in this article on the topic here.

Having this experience has certainly made me take water filtration far more seriously. Previously I had felt invincible and been adventurous (or stupid) enough to drink town water in places like India (note this was after six months of traveling in India).

What is this species living in my gut?

Dientamoeba fragilis is a parasite that lives in the large intestine of people, and animals. Many people who have the parasite do not have symptoms. Often it is mis-diagnosed as something like Irritable Bowl Syndrome (IBS). It is also not often recognised even by well known clinical practices, with many saying that it is asymptomatic, that is, it occurs but shouldn’t have any effect on humans and so is not always treated. This seems to be changing with well known medical schools such as St Vincent’s in Sydney (Dr Damien Stark) and UK schools recognising that the parasite is a health issue.

According to The Centers for Disease Control and Disease Prevention, the most common symptoms are diarrhea and abdominal pain. Symptoms can also include loss of appetite, weight loss, nausea, and fatigue. The infection does not spread from the intestine to other parts of the body. My symptoms included bloating, foul gas (smelly farts), unformed stools (I describe them as ‘fluffy’ – I’m sorry this is very graphic!), and as it got worse I also experienced sleeplessness and fatigue. Occasionally I felt so unwell I had to leave work early and lay down, and even lost it emotionally.

Through my own research on blogs and forums, there are many people suffering from this parasite and from another more common one Blastocystis hominis. Some people are desperate to rid themselves of chronic infection with the ‘bug’ while some struggle to even have it properly diagnosed.

Why D.fragilis and B.hominis are not easily diagnosed

It seems the reason these parasites are not well diagnosed is mostly due to the way in which the stool sample is preserved. The parasites easily die off in air, and so a special fixative is required to preserve three stool (poo/faeces) samples. This is the reason that people may carry the parasite undiagnosed for years, and are often provided with a diagnosis of IBS.

If you suspect you may have one of these parasites be sure to see a sympathetic doctor who will write a referral to a pathologist indicating that your stool samples need to be taken over three consecutive days and be preserved in a special fixative!

My treatment

Once I had an accurate diagnosis, I got straight onto herbal treatments. While this didn’t work for me, with correct dosage and persistence, this may be a good method. See a skilled naturopath for the full list of practitioner dispensed herbs/supplements. My experience with this route was that it certainly reduced my symptoms dramatically, but once the monthly dosage finished my symptoms would return.

I took preparations of anti-parasitic natural ingredients including Wormwood (Artemisia absinthium), Black Walnut leaf (Juglans nigra), coupled with herbs and nutrients for the gastrointestinal tract which is damaged from the persistent infection (things like Aloe Vera, Slippery Elm bark, Tumeric, Glutamine). I also took a probiotic.

In the end I called my naturopath and after a discussion on symptoms and risks, I asked for a last resort antibiotic prescription. It is important to take particular antibiotics as some types work better than others in treating parasites. I took a high dosage of two types of antibiotics for ten days, and I felt quite awful, particularly for the first few days.

Fingers crossed I am all clear but I wont know for sure until I have another series of stool tests later this month. You will be happy to know my bowel movements are getting closer to normal, but as I have damaged my gut flora it may take some time to settle into a proper healthy rhythm.

Take aways for me: super cautious with own hygiene, eating and drinking from clean places only, filtering tank water, staying healthy so my own immune system can fend off any reinfections.

Update: Read my follow up post on how I healed my gut after intestinal parasites.

© Angela Standley natureglow.com.au – please link back to my site if you use the recipe/reference/source me. Love to have your comments/questions below.

627 thoughts on “A gut-full of Parasites – my experience with Dientamoeba fragilis”

  1. Anyone have urinary issues related to DF? I have had months of infections (first yeast, then bacterial vaginosis…after antibiotics for bladder infection) and found out in August I had DF. Months later I’m still trying to get to the bottom of it. I have not tried any specialized drugs for it but my naturopath gave me a prescription of clioquinal. The more I read the more I’m amazed at the destructive path these parasites have. My stools have returned mostly to normal but this constant bladder irritation has stopped me from having a normal life. I am thinking of taking the clioquinal then doing a natural parasite cleanse afterwards to restore everything. I keep thinking I’m the only woman in the world with this!!!

    1. I was diagnosed with a bladder infection before diagnosed with DF. I’m 59 and thought it was just the muscles etc failing. I had no burning sensation so just put it down to age, being a woman and 2 births. My Doctor was away on holidays and I told the locom and he did a urine test straight away and said I think you have a UTI. I had a test and it came positive. I had it for months. I still didn’t feel well and the Doctor finally tested me for parasites. I had suggested I had a parasite on 2 visits but he kept saying no I couldn’t. Finally I was diagnosed with DF he was a little embarrassed I think. I was given some antibiotics for the UTI and I haven’t had one since but still have DF. I am due for another test. Still don’t feel right but a whole better.

      1. That is like me Di. Also, I am still getting a right upper quadrant discomfort every now and then, along with nausea as well. It’s not there all the time though. I am okay with a lot of foods but there are many foods I definitely still can’t eat otherwise I will feel unwell. I am eating a pretty clean diet of a few fruits (only apples, bananas and berries), lots of vegetables (excluding a few), nuts and seeds (only almonds, pepitas and macadamias), non-oily species of fish (i can’t eat canned fish, as it makes me unwell), rice, most meats, soups, stews, stir-frys, Thank goodness someone mentioned the UTI thing. I have never had a UTI. Friends say that having a UTI feels like a burning sensation / sharpness when urinating. I don’t have that. However, Di, I am thankful you mentioned that you don’t have to have those symptoms to have a UTI. I have a little urethra discomfort…is that related to UTI? I am going to get it checked out. What antibiotic did you take for it? I am really not up for taking any antibiotics at this stage, so suggesting other alternatives that work be greatly appreciated.

  2. I’ve posted before about my 10 year old son. He has been cleared of DF and pinworms for about 2 months now. The struggle is getting his gut to shrink and regain its natural motility. We know his colon was stretched out from stool when he was in the process of clearing the parasites. He is on Miralax and Senna to keep stool coming daily, and is suffering from incontinence – both fecal and urinary. Not daily but often enough for this to be a real challenge. No previous history. Has anyone else experienced motility issues and/or incontinence after parasites?

    1. I ended up with a UTI and I didn’t know I had it for months because I had no other systems except passing a lot of urine and it was urgent. Check he doesn’t have a bladder infection they don’t always sting.

  3. ND, look into a herbal product called Iberogast. It is made in Germany but I am pretty sure you can purchase it in America. It is considered safe for children to use. Since May, I have been through three bottles, as it has helped me tremendously. It is recommended to be used for two to four weeks. The only caution about using this product is that it contains licorice, which isn’t meant to be used for an extended period of time. I have had such a rough time with my DF infection. I don’t think it has gone, as I am still feeling unwell. I wish my doctor gave me a combination therapy from the get go. How is everyone else going since treatment (Di, Jerry, Jess). Also, I came across this article, which some of you might be interested in:
    http://www.dailytelegraph.com.au/parasites-linked-to-sewage-fertiliser-as-stomach-bugs-grip-sydney/comments-e6freuy9-1226051794833. Have a great Sunday. Blessings and good health to all of you. xo

    1. Iv been treated with 2 separate antibiotics. I recently tested negative but am having ongoing stomach problems.
      I have heard these ongoing symptoms are common with giardia aswell. Hard to find and info to help though

      1. Do you have nausea? This is my biggest complaint. As previously mentioned, I believe this bug has caused me to have food intolerances. Even though I have eliminated so many different foods, there are still a few foods I am finding out that I can’t eat for now. I think it just takes time to recover. What really upsets me is that no one except the people on this forum can understand what I have gone through. There have been times when I have felt so broken from this that I just start crying in public (not hysterically or anything) but tears just start coming out because I have felt so powerless due to unhelpful doctors, the time and money spent on trying to find out what was wrong with me, and now the money that needs to be spent on healing myself, not having any income for most of this year, etc.

      2. chailove
        NOVEMBER 2, 2014 AT 10:30 PM
        Do you have nausea? This is my biggest complaint. As previously mentioned, I believe this bug has caused me to have food intolerances. Even though I have eliminated so many different foods, there are still a few foods I am finding out that I can’t eat for now. I think it just takes time to recover. What really upsets me is that no one except the people on this forum can understand what I have gone through. There have been times when I have felt so broken from this that I just start crying in public (not hysterically or anything) but tears just start coming out because I have felt so powerless due to unhelpful doctors, the time and money spent on trying to find out what was wrong with me, and now the money that needs to be spent on healing myself, not having any income for most of this year, etc.

        I could have written this post. Yea nausea is my worst complaint.
        I’m trying to work out my next step. Have you seen a naturopath?
        I’m not sure who the best person to see is?
        I think its best to keep things simple rather than taking 20 different supplements and trying all the different diets..
        I hope your right and these lasting effects go away.
        I’m trying to be patient.
        What is your next step?

      3. Well I have started on my clean diet, no packaged, no bread etc. I’m only eating fruit, vegetables, chicken and fish and water. My headaches aren’t as severe, I am also going to have a colonic. I have to go for another test soon fingers crossed.

    2. I have been told I have Dientamoeba after a colonoscopy, the tests after cleaning “everything” out apparently make it much easier to capture and identify these little parasites. I too have been suffering for years with marshmallow poops, abdominal discomfort, bloating, gas, itching anal, some nausea and experiencing both Diarrhea and constipation (not at the same time).
      I had 2 different treatments of antibiotics…

      Flagyl(Metronidazole) did not work. (50% or less success rate as resistance strains are emerging)

      Secnidazole (70% success rate) did work for about 1 month then symptoms slowly returned.

      Unfortunately after this 2nd treatment the specialist wants to test with samples to make sure I still have dientamoeba – the tests have come back negative after 2 x -> Even though he is the same specialist that told me these tests were quite often inconclusive and a colonoscopy then test of the intestinal fluids was very accurate.

      Even though the 2nd drug worked for a while and the symptoms all came back he is calling it “IBS”.

      I am calling that BS, especially after the 10 day course of Secnidazole worked for about 1 month (with the slightest of anal itch the only persistent symptom to tell me the drug hadn’t quite cleared all of the dientamoba), I could feel the symptoms slowly come back over the next 2 months.

      I have done many hours of research and it seems that Paromomycin is 98.5% effective in clearing these parasites….

      Keeping in mind if you don’t remove the source of the infection you may still have symptoms return after 1 month or so.

      Paromomycin can be purchased from compounding chemists and as “Humatin” from online pharmacies – if you have a prescription.

      It costs around $340 per 100 tablets.

      Good luck all – hope this information helps as a normal GP does not have access to this.

      1. Hi. Our family of 5 (2 adults 3 kids under 11) finished a course each of Paromomycin( 2tabs for 7 days) aboit 2 weeks ago. We are hoping for total elimination of DF. It has been a tough 6 months after we were diagnosed. We haven’t travelled overseas. Our immune system has taken a real hit. Complete exhaustion and many other ridiculous symptoms. Eg. Brain fog, headaches, flu symptoms, aching joints, rectal bleeding, irritation of hemorrhoids.
        We saw an infectious diseases consultant for a prescription and the cost was much cheaper than compound pharmacy. Like $35 per script x5.
        now we have to sit back and wait to see if symptoms return. Im feeling more energised but still having abdo pain and some days of bowel urgency/ frequency.
        Totally over being sick.
        Hope you all find a road to healing.

      2. Hello Stephen,

        I am so interested in finding out if the Paromomycin got rid of your Dientamoeba Fragilis for once and for all? I am having a difficult time finding Secnidazole in the US and just read your post from a few years ago. Please let me know how you’re feeling now. Im desperate for some antibiotic solution. Have already tried Flagyl.

        Thank you!

        Heather

    3. Hi, regarding the UTI, the doctor said they aren’t always down low which causes the stinging when passing urine. When it is affected further up you get urgency and no bladder control but no stinging. This is what threw me, I was use to the stinging so never thought I had a UTI until I was discussing it with the older doctor.

  4. I read a lot of posts here about folks being infected with D. Fragilis. And lot of you here seem to have tried mono-drugs like Flagyl/Metronidazole or Paromomycin. According the literature, mono drug will not work for D. Fragilis. It has to be preceded by a tissue drug.That is, tinidazole followed by Paromomycin. This is if you have E. histolytica or D. Fragilis. And I don’t know why many of you keep receiving this diagnosis of d. fragilis in Australia? Is this a misdiagnosis? In my case, I finally found out I had Strongyloides, and it never was Blastocystis. Like you I also took Flagyl and was a complete waste. Once it was treated with Ivermectine, my health is back to normal. So I suggest that you not focus too much one single parasite; but look for others as well. Strongyloides is much easier to get than any other parasite because infection happens through skin contact. It is present in Australia. You may read my symptoms above.

    1. Hi Monica,
      Glad you are feeling much better. Thanks for sharing your story.
      Cant answer why we keep getting these parasites here. If we knew how we got it, it would be so helpful!

      1. Jess / Katie or anyone else, did you take picoprep / glycoprep before your first line / triple therapy? I heard that the CDD recommends this. Was this recommended to anyone else here? Katie, has your children’s motility issues improved? I remember you said they had undigested food in their stool. Did anyone else experience this as well / malabsorption issues. Do you also think your children still have food intolerancs and / or have they improved. I don’t seem to be able to gain weight (anxiety / worry). : (

  5. Can somebody confirm what the first line treatment for DF is? I have been told of a few different combinations. The one my doctor has given me is: Secnizadole (400mg 3 x per day), Furazolidone (100mg 3 x per day) and Nitazoxanide (500mg 2 x per day). Someone else told me this is the combination they were given, except they also took Doxycycline (and that was for DF only). If I am going to take a second treatment, I don’t want doctors giving me the wrong information…because they seriously dont understand what I / we have all been through.

    1. Dear K. thank you for you reply. As I mentioned before, I have a suspicion about the accuracy of Fragilis diagnosis in Australia. It cannot just be possible for Australian labs to keep finding just D. Fragilis in everybody there. It seems like a universal diagnosis. This seems the same as in the US, where regular labs seem to just find only Blasto and nothing else. I learnt this the hard way when I went to Dr. Kevin Cahill in new York. Cahill said that most labs mistake e. histolytic and other parasites for Blasto. because lab techs are so incompetent, and preserved samples are completely useless. Take my example. No lab could find Strongyloides; until a blood test was sent to CDC. And the only thing most labs claim I had was Blasto. And Cahill was quite right. Blasto was not pathogenic. And when I treated Strongyodies, all my symptoms vanished. Imagine what would have happened had I tried to treat Blasto assuming that is what I really had. So I implore these fellow suffering souls on this forum to suspect other parasites than just D. Fragilis or Blasto.

      1. Monica, I understand why you would think that. I know a lot of us with DF are from NSW. Is it the food / water? I am pretty confident with the Histopath screening / diagnosis. We do have strongyloides in Australia. However, from my understanding, it usually occurs in rural areas.

      2. Chailove, there defiantly seems to be a connection with sydney and DF.
        I wonder who monitors the numbers of people testing positive. There was a article from 2011 with a problem with DF in sydney

      3. I know right! I have always filtered my water for drinking and cooking at home, so I am not sure if I got it from eating out or working with children (some of whom may have carried DF but were asymptomatic). Maybe that’s why food allergies are on the increase? Someone correct me if I am misinformed, but I am pretty sure if someone gets giardia then it needs to be reported to health authorities. However, if someone gets b. hom or d. frag…nada. What’s with that?

      4. Thanks Monica,
        I feel fairly confident in the PCR testing that was done for my family as my boys have improved significantly since taking their medication. We do have to manage their diet closely but I believe that is the result of needing to heal their gut.
        I don’t know why there is an increase in these parasites in Sydney. If I knew, I would do my best to keep my kids away from the source!!
        There are all sorts of theories- drinking water and bio-solids uses in the growing of fruit and veg and of course the connection with thread worm.

  6. Hi,
    I have been struggling with symptoms mentioned on this forum for a number of months (fatigue, nausea, bloating, diarrhea etc). I have had several PCR tests which have all tested positive for blastocystis. So far, I have been to three doctors and one gastroenterologist who have all stated that my symptoms are not related to blasto. I have had a colonoscopy and endoscopy, as well as several blood tests which have not identified any other causal factors. I have completed two rounds of antibiotics on separate occasions, first flagyl, which I felt horrible on but had temporary symptom relief for about two weeks and then Bactrim in August which gave me no relief from the symptoms.

    I did a PCR test two days after taking Bactrim and despite a positive PCR test was informed that there were no active parasites and it was eradicated. I have currently been referred to a nutritionist, who has put me on a low fodmap diet, but I have found this to make little difference. Does anyone know of a doctor in the Brisbane area who will prescribe the triple therapy recommended by the CDD as none of the doctors I have been to will give me that prescription. Any help would be much appreciated.
    Cheers

    1. Sam,
      I have just had a colonic and I feel much better. Have been on a clean diet, no packaged etc. Only veges, salad, chicken, fish. Water. Fruit with low sugar content apparently they thrive on sugar. I have DF and I’m due for another test. I am having another colonic on Saturday. I’m feeling so much better my headache has nearly gone. You can do a parasite cleanse. I’m on the Sunshine Coast. 🙂

  7. Hi K. After reading almost all the comments, I had similar symptoms as your children…especially with the different foods that I went off (oily fish, avocado, etc). I also suspect salicylate sensitivity. I had it when I was younger but I grew out of it. Has that improved for your children now? Anyway, as I suspected, I still have DF. I was only given doxycycline for my first treatment. Within two weeks after finishing it, I had dizziness, intestinal stuff going on, more nausea, etc. It was like the DF came back stronger or something. Such a pain. Anyway, my next step is that I am going to take what is apparently the first line treatment for DF. It is the same medications your boy / boys took: Secnidazole, Furazolidone and Nitazoxanide. I assume the adult dosage is higher than the children’s one. How did they go on it? Or how did anyone else here go on it? Others mentioned they needed to take time off work because they felt so bad for those two weeks. Is there anything you recommend avoiding? I eat pretty healthy anyway. My stomach felt pretty sensitive after the doxy. One product that helped with this was Bioceuticals Intestamine. It really helped soothe things a bit. I wont be taking it while I take those medications though, as it has slippery elm, and that can cause medications not to be absorbed / work properly, just like some foods (for example, no milk or magnesium products with doxy). I am hoping my stomach can get through this and I will be free of this DF nightmare. I am a very clean person (like OCD clean) with handwashing and preparing food. I feel like this has caused some level of post traumatic stress. I just hope that I can relax and enjoy eating out again and things like that (while being cautious) but not in anxiety. Handwashing needs to be taken seriously! There are so many people out there who don’t realize they are infecting others who get very sick from such parasites. Anyway, have a great weekend. Also, can someone tell me if it is okay to take SB Floractiv with the antibiotics, or wait until after I finish them? Have a great weekend everyone. Thanks for all your support.

    1. HI Chailove, I had the same thing as you, finished the Doxy, and within 2 weeks felt like it came back stronger. I am getting tested again this week, but I am very confident it is back. I need to find a new Dr as I cannot get my Dr to understand the triple treatment. Plus in the US, I cannot get Secnidazole. Please post your progress, I will hopefully be able to find a course of action in the US and be right behind you in meds. I too am worried how I will feel. When I was on Flagyl, I was very sick, and not as bad with Doxy, but still had troubles. Good Luck, I will keep you in my thoughts!

      1. Hello Annie,

        I too live in the US (Atlanta) and am finding I cannot find Secnidazole anywhere. Wondering if you finally found an antibiotic cure for your DF?
        This process has been way too costly and way too long. I am looking for some advice. Thank you for your time.

        Heather

    2. Hi Challove, Thanks for reading my previous posts. I still live with such anxiety that this parasite will recur for my beautiful boys again. The medications you listed above are what was prescribed for my boys. I think their dose went by weight but I cant be sure. both boys absolutely hated taking the medication no matter how I tried to get it in to them. They were out of sorts following the medications but I cant speak for how they really felt as they are too little to verbalise.
      There was one day where my younger son screamed for 4-5 hours over one of the doses. There were 2 more doses that day I had to get in to him! It was ghastly. I was beside myself as I was so worried it wouldn’t work.
      My kids are still very sensitive to gluten and one with dairy. I think these are reducing a little but I don’t think there is any need for gluten (I cant tolerate it either) so I don’t push it! I think fat really messes with them too.
      After reading Katie’s posts about digestive candida, I’ve reduced their fruit intake again and this has seemed to help with their erratic behaviour. They’ve both had nasty gatro bugs last week and I couldn’t sleep for days, was teary etc at the thought of going through this again. They also had a weekend of less desirable food (a sleepover with grandparents) which resulted in foul behaviour. Detox them again, recover from bug and they seem back on track. Fingers crossed.
      My younger son, seemed to have a lot of undigested food in his stools. Actually his stools were so foul from a tiny age 😦 My other son, ate more than I did at 18 months and constantly nagged for food until after the parasite was treated.
      I’m not sure whether that has helped in any way but hopefully you can extract the information you were after from it. I hope you will be well soon. PS I think I am OCD too.

      1. My goodness K, that must have been very difficult for you and your boys. I am so sorry you had to go through that. Thanks for the info. So even though your boys had DF, you never had it? I am just so concerned about taking one of the medications: Furazolidone, due to the possible side effects.

      2. Hi K
        I have just been reading through your post with interest! How old are your boys? My little girl is 16months but we have been trying to get rid of DF for months- and I am sure she had it for months before this. It is so hard to tell how she feels with it because she can’t tell us and honestly I don’t think she would know any different! She is Always hungry, is full of energy but can also be very whingey for no real reason, but the she is a toddler! She also has interrupted sleeps, but again which tot doesn’t! She has had two doses of Flagyl with no effect (actually the only time she has had a formed, non- acidic smelling poop was when she was on Flagyl!) the GP doesn’t know what else to do so said to just leave it for now and maybe it doesn’t effect her. But just because she can’t tell us, I feel she is easy to ignore! Did your whole family need to be tested? I can’t find any real advise/experience with this parasite on toddlers so would Really appreciate your input.
        Thanks so much in advance
        S

      3. Thanks for the link all of this helps, greatly appreciate it!

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      4. Hi Challove, Thanks for that lovely comment. I needed that today 🙂

        Just confirming that I have not had DF. I tested positive for blasto. My husband was found to have DF but the both of us had mild symptoms and only tiny amounts were found in our systems. We were so lucky. Don’t know how we would have managed otherwise.

        I hope that you get over this soon.

      5. Hi S, I’m responding to your post from the 24thNov here as I didn’t see it when I posted a response to your other comment yesterday. I’m sorry I didn’t see this one first.

        My children are currently 6 years and 3 years. They had been sick for a long time. We were all tested by histopath labs in 2013 which found both of my boys had DF but my husband and I were clear. They were retested 4 weeks after their medications and were both cleared. My older son continued to improve. My younger son continued to have food intolerances, foul stools, irritability, erratic, irrational behaviour. There was a short lived improvement in him. I actually believe that his results were inaccurate when they cleared the younger son.

        This year, I had significant concerns about deterioration in my older son and our GP retested through the PCR testing. This gave a positive DF result so all of us were screened again. The youngest was also found to have DF. PCR testing indicated they could find only a tiny trace of DF in my husband and a tiny trace of blasto in me. We treated them again using the CDD protocol and both of them were cleared again through the PCR testing process. My husband and I have also had treatment. This time I believed both boys’ results!

        I personally think tank water is the culprit however I guess we will just never know.

        I feel sad and guilty for saying this but I’ve found this whole parenting journey very difficult as at times as their behaviour has been impossible, mortifying, exhausting and embarrassing. I found it very hard to connect with my youngest son as he was grumpy from the minute he woke up to the minute he went to sleep and even then the poor little darling would keep us awake at night screaming, grunting and rolling around. There was a stage where he would climb onto my head during the night so he could sleep on my face (he was 2 years at the time). Videos of autistic children massaging their tummy’s on the sides of lounges cued me in to the realisation that perhaps it was soothing his tummy in some way. He is not autistic but a very clever child who was trying to soothe his own pain. Naturally this behaviour was very concerning.

        After the first treatment, my older son said ‘mummy, my tummy doesn’t hurt me anymore’. Broke my heart as I didn’t know he was in pain. I actually don’t think he knew any different until the pain was gone.

        As for the treatment, I think diet is really important. I’ve posted below that eliminating gluten and dairy really helped. reducing sugar including fruit sugar was also helpful. My kids really deteriorated in winter with starchy vegies like sweet potato and potato. Reducing this might help too. Probiotics made them worse whilst they had DF. They are still funny with avocado, meat and fish (oily things).

        I’d encourage you to ask your GP to consult with the CDD or find a new GP who knows about parasites. Your daughter is too little to go though unsuccessful treatments that are unlikely to result in the eradication of this nasty thing.

        I’m so grateful for this blog and for the people who have helped me along the way with their advice, comments and experiences. Hence why I keep logging in to see if I can help others in some way especially knowing that things can get so much better. I’m also relieved and overjoyed that my youngest now wakes cuddly, happy and content and without DF we have a really terrific connection. My older son is going from strength to strength and he is also a delightful little man who fills us with great happiness after such a hard few years!

        Best Wishes, K

      6. Hi K

        Thank you so much for your response!

        The details you give me are fantastic and actually bring a tear to my eyes because they are very similar to what I am experiencing with my daughter! However I was starting to convince myself that I was just overemphasising things and that maybe I should just “suck it up” and deal with a more difficult child, my older two were nothing like this!
        The most interesting thing is what you said about the probiotic, I have been saying for about the last year, that bub is much worse when she has probiotics- no one paid me any attention and the naturopath had no idea why, saying it didn’t make any sense – again I put it down to me over-reading things!

        After our holidays I am going to go full steam ahead into getting this sorted, in the meantime I will reduce gluten and dairy and cease probiotics! Not sure what area you are in and one lady has recommended a GP, but just in case I can’t get in, would you be happy to recommend your GP?

        Thank you so much! It is nice to know I am not alone and that there is a reason for all of this, a treatable one at that!

        Thanks for your time and I hope you never have to worry about this again!

        S

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      7. HI there. So sad to hear you are also going through this. Thanks to K and Sue for the helpful comments. You may have read some of my other comments about my own story with DF. I am just about to start another treatment. Don’t mess around with doctors who don’t know how to treat this. That includes doctors at hospitals. I can understand why children display out of control behaviour with this parasite. As an adult with this parasite, there have been many times when I have found it very difficult (actually more like unbearable) to function emotionally and physically. There were times when I wondered how I was going to get through the day. There was a period of a few weeks where I was barely functioning at all and had to sit down or lay down to take a shower. I couldn’t leave the house until about after midday because I would have two to three bowel movements with diarrhea. Bowel movements with this parasite vary as well, as others have noted. Since I have had this parasite, I have experienced bowel movements that range from diarrhea, to fluffy, sticky greenish brown loose stool to constipation. Sorry if that is too much information. Anyway, as an adult, I am mostly able to control my emotional behaviour no matter how bad I am feeling (I have cried so much since I have been ill from this). I can imagine it must be SO hard for the little ones wondering what on earth is going on with their bodies and why they feel so bad. I also can’t imagine how heartbreaking it is to see your little ones suffer from feeling so sick. Anyway, regarding that article, it does make me feel hopeful that screening for and treating such parasites will become common practice with gps and hospitals…especially if people are presenting with symptoms as described by all of us here.

    3. Hey Chailove and everyone else,
      I have DF and went through all the symptoms described in this forum and all of them worsened while I was on antibiotics due to the side-effects being worse than the bug. I lost 8 kilos in 5 weeks, both muscle and fat. I’ve noticed that ever since I had the antibiotics my legs now get easily bruised. Has anyone else experienced this??
      I took Flagyl, and then Metronidazole for 7 days. Fortunately most symptoms have gone now for the past couple of weeks even though I still tested postive for DF after the treatment.
      I’ve been told by two doctors that if I have no symptoms I shouldn’t worry and just live with the parasite but I’m keeping an eye on it.
      I suspect that DF has made me lactose intolerant causing me to be constantly bloated. If I avoid dairy I feel better so I recommend you try with lactose free products and see how you go.
      I also read that DF thrives on sugar and carbs. Unfortunately while I had the diahorreas all I could manage to eat was white rice and water crackers which is ironic. I also could handle peel red apples and then introduced grilled chicken breast.
      After the symptoms went away I remained on a bland diet for a few days avoing all fats, dairy, fiber, etc…and slowly introducing these. I gave up coffee as it irritates your gut. I try to eat very healthy now, lots of veggies, fruits, lean meats, no deep fried.
      BTW, doctors don’t know where or when I caught DF but the symptoms flared up the week after returning from a holiday in NSW (I’m from Brisbane, QLD) and drank tap water there… interesting “coincidence” given all the comments above about people from Sydney/NSW testing positive to DF… I reckon it’s in the water system as I didn’t eat out not once while on holidays. But then again I could have caught it earlier this year in Korea or Japan or years ago in South America. We’ll never know.

      1. Claudia. Sorry to hear you are unwell too. It is funny you mention that your legs get bruised easily since taking medication. I have experienced the same thing. Today, I also just happened to mention this concern to my acupuncturist, who told me that it is generally from your organs being weak. Did you know that Flagyl is not recommended as a first line treatment for DF (according to the CDD)? Also, I don’t think I have met anyone on this forum who has cleared BH or DF with Flagyl. If you are in Brisbane, maybe you can go to see Dr. Greg Emerson as others on this forum have. You might want to read some of Katie’s posts. Anyway, even though it sounds like things have got a bit better for you, to me, it sounds like you still have symptoms but they are now less severe. That is like me. Also, I have lost almost six kilograms off my already small frame. I want the weight to come back on, so I am hoping it will once I get rid of this parasite. Also, I am not lactose intolerant (I have had proper testing done). However, I cannot eat dairy. The only exception I make is having about 50mls of unhomogenized milk in my coffee, which I am about to give up (coffee and milk). The only other dairy I have is unhomogenized goat milk kefir in a berry smoothie. I didn’t have any intolerances prior to getting very sick with this. After reading your post, I feel scared to take my next round of medication. Praying it works. Take care of yourself. Also, does anyone know if diatomaceous earth could potentially get rid of of BH or DF?

      2. Thanks for your reply Chailove! I have benefited much from it and other’s posts. I realize that I need to get DF treated and not just learn to live with it as doctors have told me. I might give Dr Emerson a go.
        Please don’t be scared. Not everyone reacts the same way to antibiotics and my weight loss was due to having diahorrea for 6 weeks including the 10 days of antibiotics. So the weight loss was not just caused by the antibiotics. I also wasn’t absorbing food properly (undigested food in my stool, gross…). I also felt very sick during the treatment as antibiotics destroy gut flora but I went on a gastro diet for a few days and then I started slowly feeling better, most symptoms went away and I’ve been eating normal since then (except for dairy products) even though still having DF. Something that I read ages ago and I keep in mind is that when we burn body fat (which happens when you lose weight) many toxins that were stored in the fat get released into our body and make you feel ill (dunno how accurate that is). I realize from other posts that it would have helped to take probiotics while on treatment, will you?. Only sometimes I had Yakult probiotic drink but it made me feel worse probably because it’s made from milk and I can’t manage dairy anymore.
        Also, I’ve read hundreds of posts on this blog and noticed that no one has mentioned that feeling fatigued/tired may possibly be due to a deficient absorbtion of minerals and vitamins, including iron (due to food just passing through or not eating some foods). The second Dr I saw made me get a blood test and it showed calcium and iron deficiency (everything else was fine to my surprise). As far as I know Iron deficieny causes fatigue. I’ve been on iron tablets, multi-vitamins + extra vitam C and my energy levels improved. I only had headaches when I was dehydrated from diahorrea and so I took Hydrolites.
        Btw Chailove, I can sympathise with your nausea symptoms. I had severe nausea and gagging reflexes 3-4 days in a row and couldn’t eat a thing (I lost 3kgs that week). I would start gagging out of nothing even while walking down the street! The severeness stopped after the Flagyl but I still had some nausea every now and then during the following weeks. I never thought that Flagyl would cure me of DF but I didn’t want to pick a fight with the Dr and just took the thing!
        I pray your treatment goes well, please let us know!

      3. Hey Chailove, I just called Dr Emerson and he’s not available until February and his first consultation costs $495!!! Totally out of my budget…I’ll have to suffer with hit and miss with my usual GP.
        I’ve been prescribed Doxycicline. Has anyone had successful results with this for clearing Dient.Frag??

      4. Claudia,
        The 10 days of doxycycline did not work for me. That is why I am currently taking a triple therapy script. Others here have taken doxycycline and it did not work for them as well. The CDD has a first line protocol which is doxycycline and secnidazole for ten days. As I did not clear with doxycycline alone, my doctor suggested the triple therapy script. You can get your doctor to call the CDD and get the protocol, but get your doctor to tell them what you have already taken and which script they would recommend for you next. Also, my doctor recommended (as Katie’s did as well) to take Picoprep the day before planning to take your medication. Some people find it hard to take (it tastes gross). However, I found the experience painless compared to the other suffering I have had to endure with DF making me ill. Talk about it with your doctor. I just don’t want you to waste time and money on scripts that don’t have a high chance of working because I know how much of a pain all of this is to go through. You will be in my thoughts. Take care and check in again. xo Also, thanks to K for your lovely comments. I am hoping that in the future, all of what we have written will be taken notice of by someone who cares enough to get this issue of parasites out into the public (health departments, news, whoever).

      5. Claudia. Did you say taking antibiotics made you feel worse, then you had some improvement after stopping them. I am experiencing that.

        K and Sue, did your children complain of nausea taking those medications? I am taking the same ones but at the adult dosage and I have felt quite sick at times through my treatment.

        Danny, how are you feeling now that you have finished the medications?

        Healing to all.

      6. Hi Chailove
        It is normal to feel nauseas when taking the medication. I did with the blasto ones. My husband didn’t but he had no symptoms anyway and has iron guts. My son looked like he felt nauseas though never articulated as such. He is only 5 and has only once vomited and only ever been ill from this bug so doesn’t really know what it means ‘to feel sick/nauseas etc…’. Take care x

      7. Hi, I was wondering what happened with the forum below which I was a part of? I really wanted to follow up and hear what results “chailove” got from her treatment.We were in a conversation below. Is it possible for me to get her contact details or will the forum be back? Thanks,Claudia PS: Maybe you can send her my email and see if she wants to contact me? Date: Tue, 9 Dec 2014 09:11:10 +0000 To: claudiapalmav@hotmail.com

    4. Hi Challove!
      I am currently undergoing a quadruple therapy for DF and BH and one of the antibiotics i am taking is Furazolidone. Although there are many DO NOTS to eat, according to the instruction sheet provided by my specialist doctor, it says,”All grains, such as wholegrain bread, cereal, rice, pasta, all FRESH, frozen or canned fruits and vegetables, nuts and peanut butter. FRESH meat, poultry and fish.” You just want to avoid foods that are HIGH in tyramine. Some foods such as sour cream, raspberries, some dairy etc have tyramine but not necessarily significant amounts. I laid off the dairy mostly, however the ‘white’ cheeses such as cottage and ricotta are fine. Although it may seem limiting at first, the diet guidelines encourage you to broaden your scope of foods and yeah it means more time spent analysing what to eat, but its only short term. Just research tyramine if you’re still not sure and dont get too bogged down about avoiding it in every food. The list of foods to mainly avoid which i got given by my doctor includes “alcohol, avocado, pears, aged and fermented, smoked, air dried and pickled meats, fermented soy beans, soybean paste and soy sauce, fermented or spoiled fruits or vegetables, processed yeast products (not sure what that is), vegemite, chocolate and caffeine.
      In my opinion you should be fine eating anything else (and remember to take the meds with food).
      My experience was that the 4th day of treatment was my worst, and it slowly got better from there and now its my 8th day and im much better than a few days ago! Goodluck and i hope all goes well for you! 🙂

      1. forgot to add, the list of foods with the word FRESH in them, are foods that are GOOD for you to eat! 🙂

      2. I got the same information sheet from Sydney Compound Chemist. Thanks Danny. Yesterday was day four for me and it was also my worst day so far…including this morning. my body ached, I felt feverish, sweating and almost vomited last night and this morning. I even cried at one point because I felt like maybe I wasn’t going to be able to continue taking these strong medicines. I am feeling a little better today since I ate lunch. I am eating all fresh foods, as aged foods contain / develop tyramine (including leftover cooked foods). I think I just feel limited because I usually eat a lot of bananas and Asian food and I also don’t have much of an appetite. My doctor also told me not to eat kefir, which is what I feel like, but it is fermented. Unfortunately, those fresh soft white cheeses are out for me. I also found this link, which is helpful: http://www.health.qld.gov.au/nutrition/resources/low_tyramine.pdf.
        However, remember no alcohol. I don’t drink anyway. Thanks again.

      3. Hey Chailove,
        That’s where I got it from as well (as i couldn’t find the meds in Melbourne). Day four was terrible, but hopefully it does get better as the days progress (as it should and did for me anyway). I heard from someone that when the parasites die they can release some sort of toxins which may possibly explain “day 4”? (but I haven’t researched that). Sounds like you’re probably past the worst of it! I was working every day this week and I can relate to how you felt. Just can’t wait to eat what I want (in your case Asian food, and in my case avocado). Thank you for the link, it’s a pretty neat table to refer to. I don’t drink either so that’s no problem! Let us know how you feel towards the end and a week after you finish the treatment. Let us hope it all works. Best wishes for you.

      4. Hi Chailove,
        I’m sorry you feel horrible. My boys are too little to express the feeling of nausea. Like Sue’s child, I think my boys were so unwell for so long and used to feeling that way that they wouldn’t have expressed any different. Trying to get the medication in to them was a challenge and I assume that it tasted revolting and made them feel horrible. I would not be surprised if they experienced nausea.
        Hopefully the nausea means that the df is perishing for you! Good luck. Hope this is the beginning of getting your life back 🙂

      5. Thanks K. I am a petite 43kg (I have lost between 5-6kg from this bug!) Since adults have different body weights but are prescribed the same dosage, I wonder if that is why I found it a bit challenging…particularly on day 4 to half way through day 5. Days six to eight were fine. Then…the last two days were really horrible. I felt so sick! My body was shivering and sweating. My partner said my sweat had a chemical smell. Also, I felt like someone had beaten my whole body with a big stick. Since I have finished my treatment, I still have aching legs and feel a bit fatigued. I think the medication causes inflammation in the digestive tract, so it takes a while to settle down. My stomach feels sensitive, so I feel I need to be careful (no citrus except lemon, coffee, chilli, strong spices, sugar, no starchy food). I am ok with white rice and potatoes. I don’t eat gluten, apart from the rare occasion of eating wholegrain sourdough bread. Also, like you, I have suffered from crippling anxiety. I have never tested for pyrroles, but when I read about the symptoms I had a strong sense that has been part of why I have felt so bad. I also believe I had a magnesium deficiency. As soon as I started taking liposomal b vitamins with zinc picolinate (I take it after lunch) and magnesium (night), I felt a whole lot better even while I was suffering with DF. I have realized that most doctors don’t know much about nutrition. They usually only test for things like calcium, iron, vit d and don’t do thorough blood work / or other tests. Even then, blood tests aren’t always accurate when it comes to testing for things such as calcium and b12, thyroid, etc. Most doctors also don’t try to get down to the root cause of why someone is having particular symptoms. How many people here went through months of suffering before they got a proper stool test? Healing to all of you. xo

    5. Hey Chailove,

      It’s three days on since i had my last dosage, and i can definitely feel the difference to when i was on the antibiotics. However, it is still noticeable that my immune system needs to repair itself which is why i still can’t go to the gym and also i feel my joint and muscles hurting from even the slightest of muscle strains. Now im beginning probiotics, digestive enzymes and vitamin C although im not sure if i started it too early or not. A day after stopping the pills you will probably feel about the same but gradually the symptoms ease off. I found while on the pills that after day 4 and 5 i was gradually getting better with the fatigue however headaches continued throughout treatment.

      How have you been going with it so far?

      Hope you’re coping well, hang in there!

      1. Oh Chailove that sounds revolting. You poor thing. Hope you are picking up now.

        I agree with you about doctors not knowing enough about diet, nutrition and how hugely nutrient deficiencies impact on people.

        I really want to spruik the Mindd Foundation as they are having another forum for families and practitioners in 2015 in Sydney. There are some amazing speakers including Dr Natasha McBride (GAPS diet) and Christina Yeo. Mindd Foundation are hugely focussed on healing the gut and evidence based practice. At some of the events I’ve been to they have had brilliant question and answer time and the opportunity to pick the brains of some of the speakers. I was so amazed having cornered the beautiful Christina Yeo a week before our first son was picked up as having DF for the first time (I was going out of my mind at this time) and she asked whether we had tested him for parasites. Fortunately we had and 2-3 days later we got the DF confirmation.

        Pyrroles is very interesting. Again, I have learnt a lot about this condition from my GP, my own research and though some of the speakers at Mindd Foundation.

        Hope you find that helpful. K

      2. This is a message for Tim. I am sorry to hear that you have been unwell. I am just wondering if you can pinpoint what it was that made you sick in Thailand? You know how when you get food poisoning you just know what it is that made you sick? Was it food or water? Also, I just want to say that some people here have been criticizing the Australian hospital’s / CDD methods with regards to the treatment of E. histolytica. If you read the following article, you can see the medication schedule required for the treatment of E. histolytica that St. Vincent’s Hospital follows. I have heard from someone else that the CDD uses this same medication schedule for the treatment of E. histolytica.

        https://www.mja.com.au/journal/2007/186/8/amoebiasis-current-status-australia

        Tim, have you been to see an infectious diseases specialist? Also, if you got sick from eating fish or liver meat you may have liver flukes, which are very common in Asia. Liver flukes can also invade your gallbladder. From my understanding, I don’t think you are always able to detect them in stool. Usually biopsies and a CT scan are required. I have always been told never to eat freshwater fish (even in countries like Japan and Korea) as well as undercooked liver meat (if you just happen to be a fan of liver meat) as these liver flukes are quite prevalent in Asian countries…particularly the ones found in freshwater fish. It is much safer to eat the small saltwater species. I am not sure about shellfish, but that is another food I avoid, unless I know where it has come from. The name of these liver flukes are Clonorchis sinensis, Opisthorchis viverrini and Opisthorchis felineus (from fish and food / common), Fasciola gigantica (from snails / rare) and Fasciola hepatica (from food / water). Someone please correct me if I am misinformed about any of this information.

        There was also someone here who said they got sick while they were in Brazil. I really would try to see an infectious diseases specialist if I were you. Also, I know some people here question the CDD’s methods. However, I personally know a doctor and have two friends that are nurses and they said they have seen a huge turnaround in some patients after getting stool transplants…some of these people have been able to avoid surgery because of this procedure. I know it can seem scary and risky to decide on such treatments. I am someone who feels quite disillusioned by the medical system after some terrible experiences. I am scared of going to the hospital. However, you just have to weigh these things up. Anyway, how are doctors meant to make advancements in treatment methods unless someone starts new research and trials them in a safe environment. Antibiotics are starting to become ineffective. For this reason, I personally believe that in the future doctors are going to start focusing on gut health as a way to improve overall health. I find it so sad that the lifelong consumption of a lot of the ‘food’ that stocks our supermarket shelves, as well as big chain takeaway foods, is making people sick. If you read the list of ingredients on these foods, they are just things like refined flour, glucose, sugar, vegetable fats and oils with sweet or savoury flavourings…totally nutrient deficient foods. Anyway, I don’t want to ramble, I get so upset about these things. I just want to see people happy and healthy and able to live their dreams.

    6. Hi chailove

      How did you go on the secnidazole treatment? I’m desperate to rid my DF and trying to source the secnidazole/doxycycline in the USA which is meant to be the best treatment according to the CDD in Sydney.

      Any insight from your experience would be greatly appreciated.

      Kind regards

  8. I ended up with both Dientamoeba Fragilis and Blastocystis Hominis and have had the latter for 9 years without knowing it was still there. Nitazoxinide, Secnidazole, Furazolidone and Doxycycline are my medications prescribed by a specialist because both are present. As a 19 year old travelling to uni it’s the last thing you want crippling your day! Any tips on how to get through the 10 days of 100 tablets?

    1. Hey Danny, I haven’t had to take that many pills yet so not sure. Did they give you a fact sheet or something at the chemist? Sometimes they do and there might be some advice there like taking your with meals and not on an empty stomach. I’ve read on previous posts that it’s good to take a probiotic during treatment but you’d have to make sure it’s one that won’t intefere with the antibiotics. Better ask you GP or chemist. If all fails, lots of patience and take one pill at a time, one day at a time….sometimes it’s all we can do! All the best!

      1. Hi S,
        I never know where to insert a response when the option to reply is not there. This is in response to your post dated 28/11/14.
        I’m glad that you were able to connect with my post. I never expected to have those feelings in response to my children. Heart breaking really.
        If I could make a suggestion for all parents reading this blog it is to make a diary of: food consumption, stool patterns, sleep and behaviour. Any behavioural issues, sensory issues and any triggers. When you go to your GP with evidence of abnormal stool, sleep and behaviour it gives you as the child’s parent more concrete information to advocate for your child. It also means you can talk more rationally with more definite answers.

        When you can say my child stabbed me in the face with his fork when he was told he was not allowed any more food or he sat on the toilet for 30 minutes after a party (even with a terrified, helicopter parent hovering controlling food intake) then they have to take notice at some point!

        I work with children so had the benefit of seeing some pretty foul behaviour in my years of working! I felt that this knowledge really empowered me to say that the behaviour my children were exhibiting was abnormal and therefore I knew I had to find a GP or a paediatrician who would take me seriously. Some of those GP’s tried to tell me that my kids were fine and one questioned my mental health when my husband left the room. Of course I was fragile at the time but that is because I wasn’t being listened to and I was terrified at the behaviour I was seeing. I went pleading for help and one GP humoured me by writing a referral to a paediatrician suggesting a developmental assessment to ‘allay mum’s concerns’. That was the straw that broke the camels back!!!! I never went back.

        I then wrote a detailed journal of every trigger, all intake and output, all the sensory behaviours, erratic behaviours, suspected triggers and I learnt the power of having evidence!!!! Now I recommend all families try that when they are worried about something as I find lots of parents cant answer specific questions with detail on the spot. They tend to provide very vague information and start to doubt themselves or the severity of what they are reporting. It really does help!

        For Challove, Thanks for your lovely posts and the detail you have provided. It really helps to have an adult perspective as it is impossible for me to understand the internal struggle they have had. Breaks my heart.

        I too wonder constantly how, where and why this has come into our lives! Sometimes it is all I can think of and talk of and I feel so consumed by it. Thank you again.

      2. Would love some healthy meal suggestions while taking triple therapy that includes Furazolidone. I feel so limited not being able to eat foods with tyramine (goat milk kefir, bananas, saurkraut, etc). I have had to eat white rice a few times because I just felt too tired.

      3. Hey Claudia, thanks for the reply. I am currently half way through the 10 days, and these last 2 days have been a struggle yet suddenly today (even after working) i feel a fair bit better. I haven’t heard of anyone taking the combination that i am taking and so was a little concerned (especially since one of the antibiotics is banned in America). I didn’t realise there were probiotics that one could take which don’t interfere with them however its one of those things that you can never be 100% about so I’m trying to avoid the probiotics so my chances of being parasite free are hopefully increased! Been eating like a vegan as well (normally im vegetarian). Thank you again, will look into the probiotics for now and future reference!

  9. Hi there,
    Hoping someone can help.
    I am about to take my 17month old back to the Dr’s for the 6th time to try and get this DF treated properly. She has had two doses of Flagyl without getting rid of it. The first time she had the Flagyl was the first time she has had a formed non-acidic smelling poop in her very young life!! She hasn’t been losing weight and can’t tell us if she has a sore tummy but the stool tests show she has this parasite, she is ALWAYS hungry and is VERY active and sooky and has disturbed sleeps(all of which can be attributed to being a toddler I know) the Dr’s are happy to just let it go even though the last test showed presence ofDF still. I was really just after some advice on what treatment worked for the kids mentioned on this post and some reassurance that I’m doing the right thing persisting with this I guess (not being a neurotic mum I guess – even though she’s my third!) also do you recommend getting the whole family tested??? I am so over this!

    1. Dear S,

      I feel so much for you. If you have the time to trawl through and find all my posts you will see you are not alone. Our journey has been ghastly.

      My advice- find a new GP. It sounds like your GP has no experience with this and doesn’t want to consult with others about it. You are her mother. trust your instincts and find a GP who will listen to you and address your concerns adequately. From all I’ve read on this, Flagyl is not the best medication for this parasite.

      Where are you in the world? It might be worthwhile investigating an integrative or biomedical GP.

      I’m sure my oldest son got this when he was about 18 months and my younger son at about 8 months. It took a long time to find a GP who took me seriously about their health. I’m so grateful I went looking for better care now as our GP has been a blessing.

      When my children were diagnosed with this (oldest at 4 years; youngest at 2 years at the time) – I was desperate to get rid of it immediately. There were a couple of weeks between their diagnoses. It was an eternity between diagnosis and treatment (a good few weeks) but I was adamant to trust my GP as she was the only one who had listened to me. Thankfully our she consulted with the CDD and found the treatment protocol that went with. It was an agonising wait but retrospectively much better than trying any old thing and damaging their gut even more. Unfortunately the parasite recurred and we did the same treatment again. Thankfully (beside a recent gastro bug) they seem to be improving all the time but it is a very long road! .

      I bet you are desperate to rid the little darling of this but you need to get her the right treatment and if that means waiting a little bit until you get the best advice possible then my advice would be to do that. Most people who have commented here and on other blogs have cited that medication has been the only form of eradication. The CDD in Sydney has a protocol for treatment which a number of people have commented about on this blog. Other people have talked of other types of treatment.

      There are some things that might help in the interim- reducing gluten, reducing fruit (and other sugars) and also fats. One of my children could not tolerate dairy and the combo of gluten and dairy meant he couldn’t sleep at night.

      A lot of others have talked of healing the gut afterwards. In my opinion this is crucial and I notice enormous changes in both of my children’s bowel movements, irritability, sleep and behaviour whenever they eat food that I now consider to be rubbish- this is often food others consider to be ok.

      Its now so much better. I hope that for you and your little one really soon.

    2. Hi S So sorry to hear you are on the same yucky journey many of us here are on! My son first got d frag at 1 year when we stayed with a friend whose children had it (but didn’t know at the time they did). He has had it 1 or 2 times since. My daughter has had it once. My newest son has his hands washed constantly-poor little man might grow up OCD due to my efforts!
      I also had blasto years ago which I picked up in Africa on my honeymoon and was sick for years until I was treated by CDD.
      I’m a nutritionist and I can tell you I tried every natural treatment and diet known to man to treat myself for blasto and then again to treat my children.
      Nothing worked. So we had acidic smelling mushy poos for the kids. Poos would wake them up from sleeps or as soon as they woke in the morning. Ravenous eaters but they do love and have always had only very healthy food.
      I would definitely get your whole family tested and this must be a PCR test which is the most accurate. I do wonder if my son never cleared it between 2nd and 3rd times ad his poos and tummy pain and pale colour never really recovered. He is now 5 and honestly he is and during frag has been healthier than most kids I see around..but either and most likely all because the parasite is an epidemic, lots of kids don’t eat well and I don’t tolerate health other than optimal.
      My husband also had it but had no symptoms so is important to test whole family as otherwise reinfection continues through family. Son and husband were treated at same time.
      Definitely find a new gp. We saw dr morris in turramurra this time which is so much better as she treats whole family.
      More and more help and awareness is occurring with these parasites. When I was first sick 10 years ago I was very much alone! It was a big shock to me as I had always sailed through life with support and things sorting them self out.
      The issue is not a lot is known about yhe bugs or the drugs to treat. However my experience has absolutely been that one cannot heal until bug is gone. One cannot absorb nutrients until bug is gone. Health can’t improve until bug is gone.
      So my kids have not taken any other antibiotics for any other ailments (except for son who also took lyme treatment as had a tick in his back when he also started showing fragilis symptoms). Other infections can resolve without antibiotics eg ear infections etc but fragilis can’t be (so far as my extensive research, trials on my family and numerous clients who have come to see me with parasites).
      It is sooooo much less stressful to finally get my son treated!
      I think your doc sounds like she wants to help but doesn’t know about parasites and has no more tools left in her knowledge. In this case, you need to find someone who can help you.
      Take care and you need to be super vigilant about catching again from others eg daycare or cousins or friends kids etc who may have it…

      1. Hi Sue,
        Thank you so much for all your information and experience. As horrible as it is, it is nice to know I am not the only one going through it and that there is something out there that I can do! I was beginning to think that maybe I am over-emphasising things and that this is just “how she is!”
        When we get back from holidays I will definitely book in to see the Dr in Turramurra so we can start getting this sorted once and for all! (Thanks for the recommendation! Very difficult to find help!)
        As we are travelling for a month, was there anything that you found that helped in the interim? Also are you a nutritionist? I was looking to see someone next year anyway for all of us just to tweak our diets!
        Thanks again, you have given me hope!
        S

        Sent from my iPad

        >

      2. Hi there S
        Yes definitely have hope and hang in there!
        Although I do suggest you make an appointment with Dr Morris now (if you decide to see her) as her waiting list is 2 months (also she is expensive fyi).
        I realised I should also mention the symptoms my son had once he was old enough to tell us. He had a sore tummy on and off, fatigue, pale, crying spells (more than normal for him!), headaches, started wetting bed, got v anxious and would wake in night (previously night sleeping was his forte) and get scared of things. You could put this down to ‘normal 5 year old behaviour’ but I knew it wasn’t normal for him (he now ‘sleeps thru’ again and recently after eating a fruit salad at cousin’s place spontaneously volunteered ‘mummy, I just ate food that usually makes my tummy sore but my tummy doesn’t hurt!’. He also started getting chronic headaches (this has been the last thing to resolve and I can’t remember when last one was but none this week). My daughter was only 22 months when she was treated and still breastfed and actually none of my kids were diagnosed with it for long before I had them treated since I knew from my own bad experience where to get help. I also wondered whether I was overreacting since I wondered if I was projecting my own bad experience on them. However in the literature, it is noted that about 20% of adults get symptoms and in children this is reversed ie about 80% do. Anyway, this was the first gastro for my kids and when their poos didn’t return to normal, I had them tested with Histopath (the best lab at the time) right away. Even though such a short time until they were treated, it still took a long time for their symptoms to completely resolve.
        While you are away, I would avoid dairy first and foremost. Also try and stick to lean meats and tolerated veggies. Bananas are ok but most fruits exacerbate acidic poos. Keep sugars as low as possible. Know this may not be so easy while travelling unless you can do bbq’s…also canned tuna is good for lunch.
        Practise good hand washing and hygiene between the family in case you don’t all have it.
        Also I know others say they may have caught it from water/tank water etc but there is much in literature that frag dies on contact with water (hence, ‘fragile’). Hand washing is so important. Blasto certainly comes from tank water.
        Prof Borody said you can catch d frag simply by putting your hand on a wall. Or a baby putting a toy in her mouth etc…
        Oh and in terms of the pathogenicity, Dr Morris believes even asymptomatic people should be treated since it is a pathogen.
        I know someone personally who returned from an overseas holiday with giardia and when symptoms continued after giardia was treated, was diagnosed with ‘99% sure it is Crohns disease’. After 14 years on Crohns medication, stool test through Histopath revealed d frag. Treated and all symptoms resolved. No more Crohns.
        So yes I’m a nutritionist and love to help you although at the moment am just doing phone consults in the evenings or weekends since look after my 3 little ones. My website is http://www.suewalter.com.au (however should you wish to contact me further please phone or email directly as the contact form on my website is not working and I am trying to find someone to fix it for me as my IT person has had a career change). I hope you have fun on your travels!

      3. “Prof Borody said you can catch d frag simply by putting your hand on a wall.” Oh my goodness Sue, now that just scares me. Did Prof. Borody or anyone else you have seen say anything about getting DF from being inhaled by any chance? I am paranoid about that because you can get pinworms by inhaling their eggs. Maybe I need to start wearing a mask. People don’t understand why I am even more OCD than normal these days. Having this parasite causes PTSD.

      4. Pin Worm you can get from inhaling but don’t think d frag. Though I have wondered it due to the supposed relationship between worms and frag. You can only get frag but putting hands on walls if someone who has d frag has been to toilet and not washed their hands and put their hands on that wall in the same place you put your hands. I just meant that it is very contagious-very easily passed. However it doesn’t live outside the body for long…somewhere around 24 hours (can’t remember off top of head) so didn’t mean to scare you or suggest all the walls are teaming with fragilis! Just have to wash your hands before you eat and if someone else prepares food, cooked food is of course safer 🙂

      5. I constantly rack my brain trying to work out where I got DF from. Like many of you, I believe I could have been infected from tank water while staying at a few different farms in the mid-north NSW area (but if DF dies in contact with water then maybe not so); it could have been from living with people who had bad hygiene and also had pet rabbits (with the rabbits litterbox outside the kitchen door)…this was when I actually first displayed symptoms that were similar to what I have now but went away…there is one study by Damian Stark and others that presents pigs and rabbits as being potential sources to transmit the DF parasite to humans; working with children (as there was one child and a colleague I worked with who displayed behaviour and / or digestive issues like many of you with children who have had DF describe); eating out or using a public toilet. I just don’t know, as I have ALWAYS been an excellent / OCD handwasher and carry around sanitizer gel / wipes??? Has anyone else come into contact with pet rabbits?

      6. Oh also various supplements are a little bit useful (though still don’t really preserve the status quo). Eg some antiparasitic herbs can help, a gut healing supplement including glutamine to maintain gut lining etc. Supplements are more useful after treatment when they really make a positive impact in healing.

  10. Can anyone please explain what a PCR test is and how it is different from a ova and parasite (O & P) test done on preserved stool? I am writing from the U.S. and am also looking for a parasitologist who understands these bugs. Can anyone comment on Dr. Cahill? I hear he is polarizing, doesn’t have a great bedside manner, and that he finds parasites in everyone who goes to him. Also that he is renowned. What is the truth? I don’t want to take a young child to him unless I am convinced that he will be treated well by the doctor.

  11. We are thinking of taking our son to Dr. Kevin Cahill in NYC. We hear of his reputation but also that he can be polarizing. I am trying to get a sense of what that actually means. Please post here if you have had any experience positive or negative with Dr. Cahill. Also, what does he exactly do on a visit?

  12. Thought I’d update on progress. After taking paromomycin I’ve tested negative for DF. However I still have stomach issues and have yet to find much relief in natural products. I assume the DF has messed my stomach up.
    I think its important to get retested after treatment, don’t assume that if you still have issues that the bug is still there. That will only lead to unnecessary drug taking

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