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. Hi Renee, I was diagnosed with D Fragilis and Blastos Hominis back in September and was treated in October with following drugs: Doxycycline (50 mg x2), Secnidazole (400 mg x3), Diloxanide Fuorate (500 mg x3) and Septrin DS (2 tablets a day) for 10 days.
    two last drugs are very strong, lm still recovering my good bacteria, but!!! the nasty bugs got cleared. My results came negative 2 weeks ago. And yes I stayed away from any sugar and most carbs during the treatment

    1. Wow I have not heard of any of those meds before… I wonder if they are available here (The Netherlands). I’m currently on my 4th day of Paromomycine (Humatin). 6x250mg a day. Haven’t had any sugar and very little starchy foods. Apart from the odd dizzy spell I’m doing quite well. Still praying and hoping this will work. A year and a half of barely being able to do anything is too long. I want to run a marathon!

      1. Did the paromomycin get rid or the problem? I am on it now for the second time since the beginning of Nov. d.fragilis is an arguable issue as my famous Doctor in NY – Dr Cahill does not think it causes problems. He should only know. I sent him materials recently on this from several sites. I have had a lot of tests and they can’t find anything but I know I have it. All my issues disappear when I am on the paromomycin. I hope it worked for you. I am not on as high of a dose. I am only taking it 3 x per day. Please let me know if it has worked for you. I have been suffering for over 4 months and have been to 5-6 different NYC big doctors who just scratch their heads. The paromomycin works though.
        Ed

      2. Hi Renee, did the Paromomycin work for you? I’ve tried Flagyl (metronidazole) twice, without successful eradication, so I’m going to ask my doc if I can take Paromomycin. I’ve read about its high eradication rates. How did you know what to eat and what to avoid while on the Paromomycin?

  2. Dear Community, our son (14) has been off school two-terms as we try and get his health in order. Long story (sorry), but essentially he’s had chronic headaches for approx. 6 years, typically one a week (enough to miss school) and often towards the end of term 2 or 3 days. We’ve seen many practicioners (neurologists, paedeatricians, chiropractors, accupuncturists, chinese herbalists) with little benefit, although accupunture seemed to keep them to a lower level. He’s also had digestive issues, bad-breath and ice cold feet and hands (but kind of clammy). SIx months ago we started seeing a biomedical doctor and diet related practicioner, who believed candida might be a cause. Minor changes to diet brought on constant headaches (from die-off), so he agreed to colonics to try and clear the toxins, so over these months he’s had a really rough time. Stool tests also showed difragilis and blastocystis hominis in +++ levels. Looking back he also had this 6 years ago, but we were told they were “harmless, take a worm tablet”. His biomedical doctor put him on a 10 day course on flagyl, which really knocked him around, and we did see some improvement in his stomach pain/gas, headache and brain fog, but it was short lived and the testing about 3 weeks later still had both d.frag and blasto at ++ levels. Herbal treatment (intestaclear), with probiotics and gut “building” instamine + glutamine and probiotics (VSL 3) saw some improvement when we added homeopathy .. but I mistakenly gave him combantrim when he complained of an itchy anus and it’s taken us back weeks in terms of his stomach pain/gas, brain fog and headache 😦 and after all that hard work. He is on a strict meat, veg, salad, only kiwi/blueberries diet and filtered water – we added some quinoa/amarath/rice pasta and gluten free bread and it worsened his symptoms (another mistake 😦 ) so we are now strict on the diet.

    We saw a doctor from CDD and he has recommended a last line colonscopy infusion of 3 antibiotics (nitazoxanide, furazolidone, secnidazole) .. after seeing combantrim knock our son around we are a concerned that the antibiotic treatment will be too much for him but the doctor said the non-oral approach is less of a systemic issue.

    Has anyone who looks at this forum had success with the CDD colonscopy infusion? Were there side effects? Were both parasites cleared if that was your condition? Did the treatment give long term success? We are desparate to help our son as embarking on this “find the route cause” has effectively made him worse (now constant headache – varying levels), stomach discomfort and missed 2 terms of school – or about 5 months of feeling terrible. Any comments on your experience would be hugely appreciated. Regards, Jackie (a very worried mother of a lovely kid)

    1. Hi Jacki I had d.Fragillis for two and a half years killed it but was left with chronic headaches…two months ago I started taking Byron Bay SuperKraut that has l.Bacillus Plantarium….on the jar it says that once this lines your intestine it will never leave even after anti biotics….After a strict Diet to try to control the headaches I can now eat ANYTHING I want….with no headaches…hope this helps your son.

      1. Thank you Graydon, I bought some of this sauerkraut a couple of weeks ago – but our son is resisting it. How much did you take daily? How long till the headaches were resolved? Great to know your D.frag has cleared – we are hopeful the CDD infusion will work, but, yes worried about the persistence of the headaches.

        Best, Jackie

      2. Hi Graydon, Did you experience chronic headaches when you had D.Fragilis? Our son’s headaches have become worse since we started trying to help him – modifying his diet to gluten, starch, dairy and sugar free and giving him low levels of probiotics (VSL3 mostly). I am now reading on this blog that probiotics might make D.Fragilis symptoms worse. Our son is now wiling to try the Byron SuperKraut (your post really helped here :), but I’m not sure if that should be now or after he has the CDD triple antibiotic colonic infusion in a couple of months. Your thoughts, experience would really help.

      3. How did you get rid of DF. I’ve had it for at least 4 years and I feel tired constantly. Fed up isn’t the word!

      4. Hi dear Kerry, please read through all the comments below. Many people have included successful ways to get rid of DF. If you’ve had it for four years I would highly recommend medication straight away. After reading the comments and if you still have questions, please reply with specific questions. Thanks 🙂

    2. Hi Jackie
      My 17 year old son has just been diagnosed (following a colonoscopy which was a last resort) with d fragilis after a year of chronic diarrhoea. The specialist has today recommended another colonoscopy where he will receive the infusion of three antibiotics – as has been suggested for your son. Our specialist in Sydney, who has done hundreds of these infusions, says there is a 95% success rate, and few side effects from the treatment. If oral antibiotics are taken instead of the colonoscopy, it’s a 10 day course and the side effects are apparently horrible (nausea etc). We are going ahead with the colonoscopy next month.
      Here is the link to the clinic in Australia that is specialising in treating d fragilis http://www.cdd.com.au/pages/disease_info/parasites.html
      This link is also helpful, as it shows how often d fragilis is not diagnosed, or misdiagnosed
      http://www.badbugs.org/Dientamoeba_fragilis/treatment.htm

      Good luck and I hope your son gets better soon.
      JMac

      1. Hi, thanks for Your comment. Yes many of the comments below refer to both those sites you mention, and I think I refer to CDD in the original post. Others of us have taken the medication and there is some nausea but it is OK and has worked- see more info in comments.

        I guess one of the main reasons I wrote the original article was to spread word as i struggled to find information but when I did, quickly realised so many clinicians do not think there should be any symptoms from these parasites or there are difficulties in diagnosis in the first place.

        You and your son must be very relieved after your journey.

        I would be interested in you sharing the experience with treatment at CDD for others on this blog.

        Kindly,
        Angela

      2. [this is an edited version of this comment to remove possible slander-Angela]
        JMac, I know well about this infusion. It didn’t work for me as i was misdiagnosed by CDD as having blast when i had another parasite E.h. And Then I took the proper drug combination; previously I had taken both triple therapies of the CDD, and they didn’t work

    3. Jackie, I really feel for you and your son. These bugs are terrible. And the lack of knowledge in the medical community astounding. Both my daughters have had d fragilis. for six months, one had both d fragilis and blasto hominis. My husband also had both. He has just undergone the CDD infusion and is on ten days worth of oral antibiotics. He feels unwell at the moment, but the procedure itself was well tolerated. He has been told he has a 95% rate of clearing it. My girls are to young however to be treated in this way, we start round three of different antibiotics Paromomycin and Furazolidone. I wish you all the best for treating your son. Jade

    4. Hi Jackie, I can’t answer your question about that line of treatment, as I’ve only taken Flagyl orally for my D. fragilis infection, which I still have. But one thing you might want to consider at some point is to have a Complete Digestive Analysis done. The Complete Digestive Analysis (see Genova laboratories) would reveal whether the prolonged amoebiasis and/or multiple courses of antibiotics have given your son leaky gut syndrome. If so, repairing the mucosal lining of the intestines as much as possible before the next course of antibiotics might maximize their efficacy. I’m going to take Paromomycin next and if that doesn’t work, then I’m going to have the digestive analysis done and focus on strengthening my gut before the next round of drugs. My thoughts are with you and your son, and I hope you’re able to resolve it soon.

  3. Hi Jackie
    I sincerely feel for your son and you! If you go onto curezone,org and search for DSQUAT you find a person who underwent colonoscopy infusion. You can contact her via curezone and I am sure she will talk with you. Hope this helps

    1. Dear Miffy,

      Thank you, yes, I will contact them. It has been a very troubling time, but it is really helpful to read comments from you and others on this forum who have been through this and come out the other side. Thank you all for sharing. Jackie

  4. Jackie,
    Hang in there. I believe that with persistence and research you will get to the end of this. You are doing the right thing by arming yourself with as much information as you can.
    There was an interview on the CDD website. The link listed elsewhere on this forum that discussed treatment options.
    Best wishes,
    K

    1. Hello K, I would desperately like to talk to you. I have a 3 year old with D.Fragilis and also have tested positive myself. I hope that you are still around on this site as I see that your children are all better. Please let me know if I can send you my email address so that I can ask you the questions I need to have help with. Cheers Shelly

      1. Hi Shelley, K will likely be able to answer your specific questions but please post them here so we can all share and learn. Before you ask, make sure to read all the comments below that K has made that are relevant so you can be sure to ask the precise questions you have. I know this is a difficult time for you all and I am glad that you have found this page as it should help.
        Kindly, Angela

      2. Hi Shelly
        Check out my posting from last year. My kids got rid of D fragilis with a 10 day course of Paromomycin. (press on ‘older comments’ on the top section)
        Good luck!
        Miffy

      3. Hi Shelly, I would rather not post my email address on the forum but would be very happy for Angela to forward it to you if she is willing. If you send an email with D fragilis in the title, I’ll be sure to read it. I’m sorry you have a sick little one.
        I haven’t been on forum for a while. Sorry for the slow response.
        K

  5. Hi all,

    I have had chronic fatigue for 9 months and can’t function like a normal person anymore. I need 10 hours night sleep plus 1-2 hours during the day. Even with this sleep I feel like I struggle to make it through the day. I used to be so athletic and fit but not anymore.

    I was diagnosed with d.fragilis and tried trinidazole single dose. But symptoms didn’t really improve. Does anybody have a recommended antibiotic regime they recommend

    1. HI there, I am sorry to hear about your diagnosis with CFS. I dare say having d.fragilis would give you symptoms very similar to CFS and that once you clear that up and rebuild your system that you will notice symptoms disappear. Please read through the recommendations provided in the comments over the last twelve months. Many people have mentioned at least two types of treatment, both using specific medications taken in specific dosages. There are links to scientific papers etc. In the next couple of months I will synthesise the recommendations and provide a summary on this post which will help, for now, all the info is below. Thanks, Angela 🙂

      1. Any luck on specific meds/dosages? My son is 11 and diognosed with DFragilis. He’s been on metronidazole 500mg 3xday,7days and is wrecked. Hes out of school 3weeks now. It took them two to get an answer to us. Tonight is last does but hes so sick. Stomach cramps, nausea, clammy, headaches are aweful and now a sore throat (maybe from doc office or 1day he went back to school. I took him back in a couple days ago and the quack doctor who said to come back if the meds were too much told us it was in my sons head, he was imagining it, and he will get ptsd if he doesnt see their mental health group. Mind you his labs came back positive for df and the quack never even addressed the throat, never got closer than 3 feet from us. I couldnt shut him up. He finally gave us 5 pills of zofran formthe nausea. What a joke. I really need any advise on meds, natural, anything to help my little guys with these horrid stomach and headaches and get this darn parasite gone. I also read everyone is the homes should get tested so parents arent carriers but they wont.

      2. Angela, do you think some people develop Small Intestinal Bacterial Overgrowth (sibo) after a course of Flagyl to eridicate Dientamoeba fragilis?

  6. Wow, its nice to know I am not the only one out there. I was diagnosed with both bugs in 2008, took both a natural and anti biotic route. After the antibiotics were complete I did a colon cleanse and a colonic irrigation. I assumed this got them. Turns out after five years of discomfort and abnormal stools and again assuming it was IBS I found out the buggers are still lingering in my gut. I have just started a different anti biotic (which is killing me because I’m such a health nut) so hopefully this kills them once and for all!

  7. Hi everyone,

    Im happy to report that we got rid of my B. Hominis with 10 days of taking Humatin (paromomycine) 3×2 pills a day. Very happy to have gotten rid of this parasite too after D. Fragilis went away too.
    Sadly I’m not feeling better yet. My doc says it can take a few months for my bowels to recover and to get my energy back. How long did it take for you that are healed? And is there anything you did to speed up the process?

  8. How long after treatmemt should I go back and get stool sample done again. I finished 14 day treatment of Paromomycin. I do have more energy but still loose stools. I am so ready to be done with this roller coaster. .

    1. Hi Maggie, did you get tested? It took me some months to return to normal stools and I did make an effort to heal my gut. I promise to write about this particular issue this month and will post on my blog. Kindly, Angela

      1. Hi Angela,

        I got rid of the parasite by Metronidazole. Four weeks after treatment I still have loose stools, it is annoying. Is this normal? I eat a lot of vegetables and fruit, take probiotics. How long is ‘some months’ you mentioned in your post, ‘to heal your gut’? Two months, three months?
        Tom

      2. Hi Tom, Yes from my experience and others here, this seems normal. Its stressful isn’t it, as there is the fear its not gone. Believe that it has an operate from that place. You can retest now, and Id recommend doing so in a week or so. It depends how long you have had the parasite and your general digestive health as to how long it will take to feel better and have things working as normal. In my experience in took say four months or even longer to actually heal my gut. Did you see this post I wrote about it? http://natureglow.com.au/2014/02/06/how-i-healed-my-gut-after-intestinal-parasites/

      3. Thanx for you reply. I read your great articles. I did a retest after 14 days en I was negative for Dientamoeba. Now it is four weeks later after that. Should I do a retest? The typical symptoms of Dientamoeba are gone for sure, I only have loose stools every morning ( I have to go to the loo about 5 times). Guess my gut is still mixed up, by the antibiotics? What were your symptoms after you were tested negative during your healing process? Also diarrhea?

        Tom.

      4. Hi Tom, yeah I recall loose stools for some time, its a little vague now. I was lucky with the naturopath I saw as she recommended blood tests for certain things which revealed low levels of some minerals including extremely low iron, low zinc, signs of stress. She recommended I increase iron rich foods (hence making pate – see post on that), chicken broths, lots of great quality f&v, but also supplements – zinc, iron, a special one for building back lining of intestines. I believe these really sped up the healing process for me. Your doc can give you a script for blood tests (shouldn’t cost anything, except B12, in australia costs about $25). Id highly recommend you do this for piece of mind. Its fascinating to see what shows up in our blood. Let me know if you do. Also, stay away from sugars, coffee -irritates the gut, and avoid gluten containing food to lessen the load on the intestines while healing. 🙂

      5. Thanx again for your reply. One remaining question: do you think an infection with Dientamoeba can lead to IBS after the parasite is eradicated? Are you completely back to normal health gut?
        Tom (NL)

      6. Hi Tom
        IBS is a symptom not a disease. Doctors love to call everything IBS if they cannot establish the cause. Your gut is propably still inflamed. Follow a good diet low in sugar (see Angela’s post) and take a Probiotic. I have had amazing success with Saccharomyces boulardii. If you are not getting better I strongly recommend that you get retested (we reinfected several times) and you may also investigate if you have Blastocystis or a different parasite. I sincerly hope you are getting better.
        Miffy

      7. Hi Tom, yes absolutely you will have symptoms of IBS, as Miffy said – IBS is a name given to symptoms. Your symptoms will remain until you deal with rebalancing your gut flora through change in diet, as well as behaviour. I have some more info on this if you would like it.

        I am starting to offer health consults and would love to offer you a free initial consult (no need for a follow up consult if not needed, no strings), for 20mins via phone (if in Australia) or via Skype if you would like to work further on getting to the cause. Let me know if this would help and if you’d like to take up the offer respond directly to this message.
        All the best, Angela

      8. This is very kind of you, but for now I will take the wait and see policy. I try to live and eat as healthy as possible. Vegan food: Nuts, vegetables, whole grains and fruit (Harvard food pyramid); hopefully my stools will become normal again.

      9. Hi Tom, absolutely fine. One tip I would give you is to look into making some bone broths. I know tricky if you are strict vegan, but a bone broth is amazing at healing tissues, including gut, is very high in minerals that need to heal. Stay in touch.

  9. Hi Angela
    Thought I give an update on our desperate situation. We all cleared last year and had pinworms again over Christmas – and guess what we have just tested positive again: D fragilis! I am certain the pinworms are coming home from school and although I had many attempt at speaking with the principle trying to introduce hand washing into the school I had little success. Here we are again- not sleeping, tummy aches, depressed and nearly killing each other. My kids don’t have any play dates any more and we are starting to isolate ourselves completely. The specialist refuses to prescribe any more antibiotics as one of our children was on 5 lots last year (which has been greatly due to medical mismanagement and ignorance). The health authorities are just shrugging their shoulders and I herewith predict that in a few years from now we ALL have to live with the parasite as nothing is done to stop the spreading. What it would take? Treat school kids against pinworms and introduce hand washing before eating a habit. That simple !
    Yes, I know that D fragilis can be treated, but what’s the point if the spreading is not stopped?
    Miffy

    1. Oh wow Miffy, I am so sorry to hear that. Ok this now makes me think we really need to get into a health authorities ear and get some serious media coverage on this. I think if we were to get the doc at Sydney Uni/St Vincent’s hospital and if I can offer up some of the people on this blog as possible interviewees the story could fly. Miffy would you be interested in this?

    2. Hi Miffy, Thank you for telling me about the treatment for your children. I feel sooo much for you as even if I clear the parasite for my daughter, once dose of pinworms and it will be all back. I am getting more confused by the minute about all of this stuff. My naturopath says that I should be feeding my daughter soups and stews and no processed foods. I questioned her about carbs and she said that we could have carbs as long as they were natural and not refined. My daughter has only just finished 14days of Flagyl and I am on day 4. Husband so far seems to be clear but still waiting on PCR for results. Found pinworm in daughters nappy so was advised by naturopath to give whole family combantrim (someone else on this site said not to take flagyl & combantrim together).
      Naturopath has given my daughter parasitic capsules which I break in half and somehow I am expected to get this down her. She also has given us Poly Bac 8 (apparently heavy duty Probiotic)
      Naturopath states that she treats kids and people all the time who have Blasto & D.Fragilis and that it is very common here in Far Nth Qld)
      I don’t know who to believe or what is the best thing to feed my child. Any ideas or help would be much appreciated. Again I am sorry that your children have this parasite back. Cheers Shelly

      1. Hi Shelly
        1. in our case and as I have learnt from others: Probiotics make it worse. The only Probiotic that gave us relief was Saccharomyces boulardii.
        2. I understand your daughter was on Antibiotics already. When did you find the pinworm? Before or after the antibiotic. I would re-test her first (and wait a few weeks as pinworms take time to hatch) before deciding in how to proceed with her treatment.
        3. Pyrantel (e.g. Combantrin) is far less effective in treating pinworms than Mebendazole (e.g. Vermox). When treating pinworms from my experience it is better to repeat the treatment twice as suggested in the medication information. Vermox has very good information on its website in how to eradicate pinworms in your house. NEVER ever treat pinworms while on antibiotics. Do it beforehand.
        4. What to feed your child? Which symptoms does she have? If she doesn’t show any symptoms I wouldn’t stress at all (life is hard enough). As she has just been on antibiotics I would not give her any sugary food as this will just give her Candida. In case she is still infected with D fragilis and is symptomatic, again no sugar or syrup (we use a bit of stevia or dextrose) and low in starch (so no potatoes, chips, gluten free bread, ….).

        Let me know if you need more info.
        Miffy

      2. Brilliant Miffy, thanks for sharing your knowledge from your own experience here. I agree with all of the info you have provided.

        Shelley, please check the other comments and links to resources. Welcome to show your naturopath as well.

    3. Hi Miffy, I don’t understand how to use this blog but anyway thank you for your answers. My daughter was already half way through the flagyl when I saw the live pinworm. Naturopath advised to treat her with the combantrim so I did all of us. Haven’t really been giving her the probiotic as I haven’t been game to give her rice milk. I have purchased Manuka honey to try and hide the parasite powder from the naturopath in, but also haven’t given it too her because of sugar. She is driving me insane about food, at the moment she doesn’t have any real symptoms. Her initial symptoms was pain on drinking water or immediately after eating anything. She did not have diarrhoea, she was constipated. Just an example of what I have fed her today is Lowan Oats with Rice Milk and a banana, two more banannas, watermelon, strawberry, rockmelon, a rice thin with tiny bit of cheese, Zuchinni fritter with lettuce, tomato, cucumber and goats feta. More watermelon, 5 seaweed crackers, handful of raw cashews and sultana’s, chicken leg with scrambled egg and now finally a pear. I will definetly discuss this with the Naturopath. I would find it far easier if I could just ring you than all this typing and I understand that this info maybe useful to other parents. I am sure I will have more questions. Thank you and Cheers. Shelly

      1. Shelly, in case no one has told you today. You are amazing! There is no way I would get such a healthy menu into my kids.
        Your daughter has just been on antibiotics and 70% of cases clear with Flagyl. I personally know kids who have cleared with the treatment. If your daughter does not have symptoms then why go through this stress? Wait a few weeks and if your daughter still tests postive then think of plan B. With this diet you are actually giving your daughter lots of sugar as all these fruits are high in sugar. In case your daughter is still constipated maybe go a bit lower on banana (as this is full of starch, sugar and constipates) otherwise celebrate that she does not have any symptoms.
        Keep us posted if she is still positiv (and I hope NOT!!!)
        Miffy

      2. Wendy
        Can I ask as you are in the UK, are the symptoms of these people with D.F. chronic tiredness, amongst others. I’ve been absolutely tired out since having a positive test for D.F. in 2010.

      3. No,, I’m in Launceston, Tasmania. The GP did not give me any details of his patients. I have been thinking about being tested myself as I have Irritable bowel. However since reducing (not cutting out altogether) gluten, on advice from a dietician, I have improved. Therefore I do not know if I have these pesky parasites.

      4. Hi Kerry
        YES one of our kids too. The doc does not believe me and want her to see a Psychologist. She just wants to stay in bed all day and all I get told “I am so tired”. D fragilis has just resently shown to cause bowl inflammation. Hence your immune system is on fight non stop. I saw some improvement with tiredness with Magnesium, Zink and Vit B6, Sunshine and a bit of exercise.
        Miffy

      5. Thanks and sorry for the geographical error! I feel for your child, I used to be so fit. I cd go running for an hour without feeling tired at all. Now, I can’t even been bothered to do it. The psychology angle is so annoying, I’d love to go running. Do I want to sit at home, no I don’t, but I feel like the fuel has been drained from my system. This is a timely warning for disbelievers: Between 1857 and 1859, Pasteur became convinced that the liquids he had studied were being contaminated with microbes that floated in the air. The medical establishment ridiculed him: How could something so small that it was “invisible” cause medical problems? Pasteur was seeing things that weren’t there! He had a wild imagination! Pasteur was vilified in public but rather than give up, he determined to fight for what he believed in.

      6. Shelley, I can provide your email and phone number to Miffy. I think you are confused about the blog site and this post. The blog and original post was written by me, Angela, but others such as Miffy have commented with their personal experiences, which is a wonderful resource to share. I cannot give you others contact details, they would have to provide them. I think best you provide yours and they can contact you if they so wish. If you want to do that, please ‘reply’ to this comment here with your details.

      7. Hi Angela, Obviously the parasite is having some kind of effect on my brain (LOL). My number is 0419 649 919 if you could pass this onto miffy.
        Cheers
        Shelly

      8. Hi Shelly
        I can only recommend to finish the antibiotics and get retested. I have only put one of my kids on a special diet while symptomatic otherwise I don’t see the benefit unless your daughter has special dietary requirements. I haven’t found a single person in the literature or on-line that was able to starve the parasite. I suspect you would rather starve yourself. There is also no proof in literature that treatments work better if you are on a special diet. My friends kids cleared with Flagyl while still eating cake and lollies.
        Keep me posted!
        Miffy

      9. Hi Miffy, Drs rang and said that my daughter has cleared the parasite. Finished Flagyl on MOnday and PCR poo sample was given to lab on Monday as well. I know that a few weeks haven’t passed but Naturopath wanted a repeat test to make sure she didn’t have blasto as well. Dr also wanted me to stop taking Flagyl and start taking Doxycycline (cannot find much evidence that this works either). All seemed good, daughter at daycare and I got things done around the house. Bring child home from daycare and she eats a pear and starts complaining that her belly is hurting really bad. Back to the drawing board. I have my doubts that the PCR test is accurate because the poo is not placed in any fixative. Will have to see what happens over the next couple of days.

      10. Hi Shelly
        I do not want to advice against your doctor. I personally haven’t found any published study on the effectiveness of Doxycycline (that doesn’t mean it does not work). I found one publication where researchers suggested to take Doxycycline after Metronidazole (Preis et al. 1991). I have also heard of doctors combining both (not published either). You may want to discuss options with your doc.

        There should always be some time between finishing antibiotics and testing. The microbiologists I spoke with recommend 1 week in case of PCR testing. I personally believe if pinworms are involved it may be good to wait a bit longer as eggs take longer to hatch. PCR is the most accurate test there is as it detects the DNA of D fragilis. In case you want to repeat a fixative test you need to wait a minimum of 4 weeks and submit 3 samples of 3 different days instead of 1 for PCR.

        I am not surprised that your daughter has tummy ache and I would not be worried at this stage. She has just been on antibiotics which probably have destroyed much of her gut flora. You are giving her way too much fruit. With this amount of fructose (fruit sugar) I would have cramps too. Do me a favour and reduce her fruit intake to maybe 2 pieces/ day for a while.
        Take care
        Miffy

    4. Hi Miffy,

      Same story here. Daughter was cleared and she felt so good! Went to school every day, was happy, not complaining about tummy ache, tiredness and nausea.
      Complaints returned after a month, did testing, and yes indeed, D. frigilis is back!

      Doctor advised another round of meds, but whats the point if she gets reinfected that quickly? She can only have one more round of the medication otherwise it will be harmful.

      Spoke to school. She could use a toilet that other people do not use so much. It will be cleaned every day at the end of the day. So that is a start.

      What is really important is, that after washing hands, you must not touch the tab afterwards. Use a tissue to close the tab, cause on the tab there is poo, which you cannot see.
      Also not eat from a bowl with for example chips or other snacks which everybody touched with their hands.

      Tried to explain this to my daughter but she s a kid and often forgets about this.

      Also feel worried/guilty, what if other kids/people get infected?

      Really tired of the whole thing, dream of taking her to a far away island for a year to prevent reinfection… but thats just a dream…

      My next step is to have the whole family tested again and treat everybody who has the nasty bugger.
      If that wil not work i am out of options.

      Julie

      1. Hi Julie
        I’ll come with you (to that island). Our nightmare has been going on for 13 months now and I feel it is just getting worse.
        Our daughter hasn’t cleared in treatment 1, 2 or 3. Then she cleared in treatment 4 but reinfected. In treatment 5 she cleared again and now she is reinfected. Each time I had proof of pinworms (pinworm tests were negative).
        So here is what I am wondering:
        – Did she have some pinworm eggs or D fragils cysts inside her that survive the pinworm and antibiotic treatment and then hatch and infect her again?
        – Are there now so many kids at school infected that she gets constantly reinfected?
        – Is she picking it up at the pool?
        We have excluded our family as source and have been frantic with hygiene around the house (separate toilets and hand towels , washing everything hot, disinfecting, no toys inside the bed…….). She is also taking her own food to parties and ALWAYS washes hands prior to eating.

        The hygiene at school is a whole topic of its own. Kids are generally not sent to wash their hands prior to eating. And you said it. Do you really want them to touch the tap in the toilet? And how many kids don’t wash their hands after going to the toilet at all. I did the test and watched kids coming out of the toilet one day. LOTS! They then touch computers, books, whatever …and here we go again.

        We have seen so many docs now and spoken to so many people but everyone reacts as this is happening in a far away country. I just wish someone would help us through this. I seriously would like to know how many kids at school are now infected. What are we supposed to do?
        Miffy

    5. Miffy, I never detected pinworms in my daughters stool. Which does not mean that they still cant be there..
      If you suspect the pinworms of transporting the D Fragilis, you might start feeding her garlic and papaya…fresh green papaya kills pinworms..
      Oh well, its just a thought, what do I know! If it would be that simple…
      I have decided to give my daughter the meds again. This is no life for the child.

      I wish you strength, I know how you must be feeling…
      Can hardly stand the whole situation anymore myself…

      Julie

  10. My GP in Launceston says he has had three patients with these Parasites. He was interested in the info re Prof. Borody that I gave him.

  11. Hi I came across this blog while researching D fragils. My son (5yo) recently complained about having tummy ache, headache, feeling dizzy. He is also coughing and has a very swollen tonsil. Especially after he eats sweet foods. GP ordered PCR and showed infection with this parasite ( only 1parasite showed in report). GP prescribed Flangyl (Metronidazole) for 5 days.

    What worries me is that the GP who prescribed the Metronidazole said he never had any experience with this parasite. It took him a while to look into the database for treatment, he even ran out to the pharmacy next door to check with the pharmacist. Apparently the pharmacist had no experience with this either.

    I spoken to my Naturopath and she said she treats it all the time. She tecommend me to order a Bioscreen test (cost $420 not rebatable) before taking the antibiotic., to see if there’s anything else in his gut.

    I did a bit of reading of this parasite and it seems in some cases it causes serious consequences if not treated promptly. Not sure if I should wait for a week to do the Bioscreen or start treatment straight away.

    1. HI Kate C,
      Thanks for your comment. Im sorry to hear about your son. What did you decide?
      I personally don’t see the point about the Bioscreen test but I don’t know much about it. It seems very expensive. Perhaps she can provide more information about what she expects it will show you and then you could decide?
      I would highly recommend cutting right back on sweets, I know its hard at first, using stevia or rice malt syrup can help t replace the sweet taste of sugar/sweet fruits.
      I would however ask the doctor to look up a scientific paper which one of the people on this blog shared (thank you!!), which contains a recent summary of the various trials of treatment options for D.fragilis.
      Title: Current treatment options for Dientaomebia fragilis infections in the International Journal of Parasitology
      Let us know how you go.
      Angela

    2. I constantly hear from Naturopaths who treat it ‘all the time’, but no one has posted here saying they cleared with a herbal treatment. Could someone with this amazing experience please come forward? I did this Bioscreen test and it took 2 months to finally get a result. It was a total waste of time as the lab didn’t even pic up the D fragilis. All the other results were a result of the effects of D fragilis in the intestine (what a surprise). If the Bioscreen test pics up other parasites – will the treatment really be any different?
      Kate, if your sons gets Metroniazole (Flagyl) make sure it is prescribed for 10 days and at the right concentration (see my older posts). Also test a few weeks after treatment again.
      Miffy

  12. Hi all – I live in California. My son was tested positive in January for d. fragilis (original post dated jan 25th) he went thru the flagyl, out 4 weeks of school, within days after his antiboitic he felt sick all over again. Sure enough he tested positive now for not only the dfragilis but now that b. hominis now. the docs said they wouldn’t treat it again so I asked for an infectious disease specialist, never got to speak with them but the pediatrician said that they were mistaken and they will treat it with sulfamethoxazl 160mg 2xday for 7days. They wont give me anything else and won’t address his nausea/acid pains in his stomach, headaches and fatigue. I’m at a loss. I feel like we keep getting 1/2 treatment and hope that it will go away. They won’t test us so I have to find a lab that will test us w/o insurance. Back to the question. Diet? What can help his stomach? Will this sulfamethoxazl work? Has anyone heard of it? BTW, I’m allergic to sulfates so I requested something else just in case he was also allergic and they came back with “well, just because you are doesn’t mean he is…” BUT why would I risk it at this point? Is is really worth it for him to get a rash, breathing issues on top of his dfragilis and b hominis? I am having a hard time giving it to him and not just changing healthcare and starting over but he’s out a month now. It’s really difficult for him being at home so much.

  13. Hi Angela and Miffy,

    Thanks for the advice. I haven’t treated my son with Dientamoeba yet. As he has a swollen tonsil and been coughing, my GP said to treat the cough first with Cefacol. We’ve finished the course and his cough is still there. My naturopath suggested that we see an Intergrative Medicine GP and get a compounding antibiotic for my son as the bug is quite hard to eradicate. It’s best to get rid of them once. I’ll let you know how I go.

    Now that my son has Dientamoeba I think I most likely have it too. I’ve been suffering from chronic nausea, dizziness, headaches, visual disturbances, digestive upsets for 3 years. I’ve been through numerous tests (gastro& colonscopy, MRIs for the brain, chest x-ray, etc and all comes back normal. Gastroentrologist said I just have IBS. I had a nasty food poisoning in December 2013 and could not get out of bed for 3 weeks, had bloody diarrohea for 2 weeks. I researched and went on GAPS diet and after 2 months on the diet I’m feeling much better, but I know I’m still sick with constant brain fog and dizziness.

    I’m waiting on the Bioscreen result to come back, I think I most likely have this bug. I’m going to get the whole family tested, as Miffy mentioned it is quite infectious within the family.

    1. Hi Kate
      Just want to make you aware that the compounded antibiotic that Angela took is not suitable for children. Hence you are a bit more limited with the treatment.
      Miffy

  14. Hello, This may be a weird question but has anyone experianced your veins being really noticeable? My veins have never showed before and now I can see them down my arms on my feet, ect. My daugter hasn’t been tested for d.fragilis but i have and am trying to clear my body of it. Just giving her a bath and her veins are really noticeable and i have never seen them like that before. Wondering if that is a sign of d.fragilis?

    1. I too have noticed that my veins are significantly more protuberant. Strange ey? And I’ve also developed some cherry angiomas (tiny red dots where capillaries have broken near the surface of the skin). Apparently these can be caused by infections, medications, and autoimmune problems. Has anyone else?

  15. Also has anyone else had a severe side effect from Yodoxin(Idoquinol)?
    I was on my 5th day of 20 days and my left arm went numb. Following day my toes were numb too. Two months later and I am still having numbness and tingling in my toes and weakness in my left arm. i have an appointent with the neurlogist tomorrow. What a nightmere this all has been, I just want to get back to my normal self.

    1. Hi Maggie.

      Are you sure it’s not Candida? I get numbness and tingling from Candida that I’m trying to resolve and antibiotics are a well known cause.

      Do you react after eating sweeter foods/carbs?

      I’ve just started SCD/GAPS diet to try and clear last of the damage left by D Fragilis as well as Candida. Also working on raising my stomach acid as this was what started the whole chain off for me in the beginning (hypochlorhydria). Good luck!

  16. Hi my daughters and I have D fragilis and have been quite ill. I’ve been having severe nerve pain and inflamation in my neck! My daughters seem to have occasional neck aches from die off or toxin release??? Anyway, we did a treatment 8 weeks ago with Parmysin followed by mabendezole (not sure if I spelled those correctly). We are reinfected…didn’t need to retest because the symptoms came back after 7 weeks like clockwork in all of us and we’re going to redo antibiotics. Which protocol works best?
    Thank you!!

    1. Bridget
      In my eyes you have done the treatment wrong way around. You need to get rid of pinworms first as they swallow the parasite and in my theory this is how it survives. Once the pinworm eggs hatches again you get reinfected with D fragilis (again, this is only one of many theories.) Hence Mebendazole treatment should be done first and from my own painful experience I believe it should be done for 1-2 worm cycles (and wash sheets + soft toys in bed, clean everything etc, short fingernails). The antibiotic treatment follows afterwards and for a minimum of 10 days. Also, if your kids picked up the pinworms from school or where ever they can pick them up again (and this is the real problem here as I believe schools are doing a lousy job in preventing the spreading of pinworms. )
      Good luck
      Miffy

  17. In response to Maggie…I had severe left arm pain and numbness in my fingers that got worse as the parasite infection progressed. As soon as I did my first round of antibiotics the pain stopped within 3 days and was gone for around a month. The pain and numbness for me was from a pinched nerve in my C7-8 region…I’ve had bulging discs forever but the parasite infection made the nerve hurt and it’s only been sore a few times in my life. I was in pain for months and had to go on pain meds. until we treated the parasite.

    1. Bridget, I doubt you have pinworms, which the best treatment usually is Albendazole and not Mebendazole. Also, left arm pain is what I had when I had Eh, caused by spleen and liver inflammation. Some people had right arm pain. If you have Eh/D.fragilis…, [i took Tinidazole (for 5 days) followed by Paromomycin (on the 6th day, for 7-10 days), according to your weight. ..read my post below on this.

  18. Finally got my Bioscreen back and yes I confirmed to have Dientamoeba. The Fecal Microbiology Analysis shows that i have overgrowth of bad bacteria and the bad to good bacteria ratio is out of whack. No wonder I’ve been feeling so miserable. I’ve suspected my condition to be Candida but apparently this is not the case, as the Bioscreen says the yeast count is well below the limit.

    Now I’m on the SCD/Gaps diet( without any fruit or anything sweet) for 3 months I’m feeling much better. But if I eat anything that’s sweet I get an instant greenish white coating on my tongue. Does anyone experience that? Obviously this is not yeast as Bioscreen tested so. My naturopath said white tongue doesn’t necessarily mean yeast, it indicates the digestive system is damp and imbalanced, the coating could be bacteria overgrowth too.

    Now it comes to treatment options. I’m not sure to pursue the antibiotic drug option or my naturopath’s herbal treatment option. It seems that no one has ever been healed from herbs only. But my naturopath is confident if I follow the herbal treatment my symptom will be gone after 6 weeks.

    1. Hi Kate C, if your naturopath feels you could treat it in six weeks I would do that! I would love if you did and share the treatment here.
      Well done on the other health changes.
      I use a tongue scraper every day and feel its a great way to cleanse gunk off tongue every morning. I think her reasoning about the tongue coating sounds reasonable.

  19. I’ve previously mentioned about my son who tested positive for Dientamoeba by PCR(Dorevitch). He has occasional tummy ache, and complains about headache and dizziness sometimes. But his bowel motion is normal. We went to see an integrative GP and he thinks the symptoms are not there so he won’t treat. He mentioned that the parasite is asymptonatic in some but causes distress in others.

  20. I looked up CDD that’s based in Sydney. Does anyone know of a doctor in Melb who can prescribe the antibiotic course that CDD suggests?

    All my GP can prescribe is Flagel or Doxycilin.

    1. Hi Kate, I’m pretty sure a MD can prescribe any drug/medication, it’s just the one they are more comfortable that they will prescribe. If you take journal reports or advice to them from CDD try should be able to follow the recommendations.
      If you have already tried this to no success, hopefully someone from Melbourne will post a doc they have gone to who is familiar with the most successful medication treatment.

      1. Hi Kate
        I was given a name of a Doc in Mel who has prescribed the CDD combo to someone. I haven’t seen the doc myself and I do not want to post any contact but I will email to Angela and maybe she can forward this to you.
        Alternatively find an Infectious Disease Specialist. They have the most knowledge and they have permission to prescribe Paramomycin.
        Good luck
        Miffy

  21. Miffy, I haven’t been on for a while. I’m so sorry to hear that you are going through this all over again.
    My older son (5 years) has been a little out of sorts and was on the toilet again for a good part of Friday. I’m hoping its nothing but even the slightest behavioural and toileting change and my anxiety shoots up! He has been ok since so perhaps its just the demands of being a little person in a big school with an extremely demanding curriculum!
    As for my other child (now 3 years), I posted last time I was on this blog that I was concerned about him. It appears that he now has a salicylate sensitivity and a casein intolerance. His behaviour is significantly improved without these in his diet. Perhaps I should get them re-tested? I suspected they both had pinworm a few months ago so gave them Vermox. I don’t know whether DF has caused this, whether DF has returned or whether these were pre-existing issues…….. will it ever end?

    1. Hi K
      I really hope your kids don’t have reinfected with D fragilis. I personally don’t think it will stop until it is taken seriously. I was told by a mother that germs are good for you after I requested that kids should wash hands prior to eating at Bday parties.
      Hygiene matters and can prevent these infections.
      At our school kids still don’t wash hands prior to eating nor do pinworm infections need to be reported.
      Is it that hard?!
      Miffy

      1. That comment and ones like it fill with quite severe rage! I think of my poor little babies and how much they have suffered in their little lives because of some individual who couldn’t wash their hands after toileting. I have spent ages trying to work out how and where they got this thing and for how long. I feel so robbed of precious time with them as they were both so sick and perpetually irritable. Now they both have other health issues which are likely to stay with them for the rest of their lives.

        I make it my business to inform people who make comments like that about parasites. I seem to have helped the parents of another child work out why he was so ill which is a positive outcome from such a journey.

        I agree that lots of policies and procedures need changing. These are regulations in childcare settings why are they not required in school environments?

      2. HI K, one of our awesome readers sent me this link to a petition which was submitted in NSW to our Premier. Its now closed, but I think it gives some hope that others also think improving hygiene is a good idea. My experience certainly opened me up to the importance of better hygiene , and while I still think being in an environment such as the ‘outdoors’, around animals etc is healthy for kids, extra precautions such as hand washing after going to the toilet, and before eating/touching mouth/someone else, is extremely important. If you think of other actions we can take it will help us not feel so helpless.
        Thanks for your comments, Angela

        http://www.change.org/en-AU/petitions/help-the-children-with-their-campaign-for-federal-hygiene-legislation-for-our-public-schools

  22. Wow! I feel like I an reading my own story when I read this blog – and I am so grateful that I am not alone 🙂
    My daughter (8yrs) is in the throws of this DF drama. Had a stool sample confirmed with DF in Nov 2013 and ‘treated’ it with Flagyl. I let myself think it was cleared over the Christmas/school holidays but then she started school this year and the tummy complaints started again. Took her back to the doc for another test this time it showed up with DF and giardia. I’ve been treating her with PolyBac 8 and high dose garlic. Not prepared to go back to Flagyl until today when I had to get her from school with terrible diarrhea – poor thing! She is hungry then not hungry, in pain and uncomfortable, mild temps, no energy but wants to play!!
    Off to see another doc today for another opinion and get him to check out the CDD in Sydney – wish us luck!
    What I am really here for (other than support and to know that we are not insane) is to ask if anyone knows with there is a link between DF and B12 deficiency? I have been B12 deficient for years with no answers. Do I have this bug too? I will bring it up with doc today…

    1. Katie
      Just letting you know that the CDD does not treat any children. Go and see an infectious disease specialist. They can prescribe other antibiotics and know more about parasites than GPs or Gastroenterologists. good luck
      Miffy

      1. If you’re in Sydney then make an appointment to see Dr Catherine Morris at Turramurra. I found out about her after the staff at CDD gave me her details. She is wonderful and very very receptive and helpful in treatment protocols and the surrounding health issues relating to these bugs in children. I am in QLD but was able to have phone appointments with her. She has patients all over Australia. My kids case became a bit tricky and as she couldn’t see them in person so she gave me recommendations and information that I took to a GP where I live. That GP conceded that he knew nothing about this topic and this was a huge learning experience for him. The end result was that we got our Paromomycin scripts written for the kids, got the scripts filled by the Sydney Compounding Chemist by scanning and emailing the scripts (originals had to be sent in the mail) and they Express Posted it overnight and the kids began treatment yesterday. Fingers crossed to a negative result after the ten day treatment…….

  23. Hi again everyone, I’m happy to report that my course of double antibiotics did the trick and eliminated my D. Fragilis immediately! The terrible rosacea face rash I had for a year completely disappeared once I was done with the meds, and after a month, I retested for the parasite and came up negative. I am now on the journey to heal my very leaky gut. I’ve written all about my parasite, rash and leaky gut protocol on my website if you want to get the details and learn how you can heal yourself of most anything. http://primalhealth.co/i-have-a-parasite-called-dientamoeba-fragilis/ http://primalhealth.co/how-im-healing-my-leaky-gut-how-to-heal-yourself-of-most-anything/ I hope you all get healthy and parasite free soon!!

  24. Hi I posted previously about my own miserable experience with DF around 2.5 years ago and it got so bad after a food poisoning event just before Christmas last year. I literally could not get out of bed for 3 weeks except for the trips made to see doctors. At that time I did not know what caused me to feel like half-dead.

    After seeing numerous specialists to see no improvement in my symptoms, I did my own research to change my diet and went through alternative medicine.

    My Naturopath have me done a Bioscreen test which showed DF infection together with overgrowth of some bacteria types (which could be a consequence of having DF). She put me on a special 6-week protocol with a selection of herbal antimicrobial and supplements.

    I’m now about 3 weeks into the protocol and I can say that I’m feeling 70% better. The digestive complaints that I used to have, such as pain, cramp, nausea, diarrhea, flatulence are mostly gone. Bowel movement is regular now. However I’m still having dizziness and brain fog, but not as bad as before. I now get a few good days with symptom free, followed with a few bad days with mild to moderate symptoms. I was told what I’m experiencing is typical of healing, you start feeling terrible, then better, then less terrible, then better, overall on a healing trend.

    I was told that DF is very hard to get rid off, and re-infection is common. But a lot of people with DF exhibit no symptoms, so the solution is to heal the gut to make myself more resilient to DF.

    I’m really glad this protocol is working for me, it is expensive I have to say, but I have never felt so good for almost 3 years!

  25. Wow i have not been around to make comments on this post – but the incidence and severity of D Fragilis is alarming. Great that info is being shared and it seems people are making inquiries and finding out about alternative treatments – even their GP’s have not heard of. Angela as I said when I had my issues your web site has been a fabulous forum.
    Jenn

  26. Well I got my stool sample results back today after waiting a month to get tested after a 14 day treatment of Paromoycin. Doctor said it came back negitive for d. fragilis but I’m not a 100% sure I believe it. I feel so much better energy wise but my stools aren’t back to my normal. Guess I will keep an eye on my symtoms and pray my results are correct.

    1. Maggie, that is good news! It takes a while for ones system to start functioning properly and depending on how long you carried the parasite and how healthy your intestines were prior, you could benefit from healing your gut. A visit to a naturopath would set you on track quickly and I have some great tips for increasing probiotic rich foods in this article- let me know what you think!

      http://natureglow.com.au/2014/02/06/how-i-healed-my-gut-after-intestinal-parasites/

  27. Has anyone tried Iodoquinol to eradicate their D. fragilis? If so, could you please tell me whether it was successful or unsuccessful for you and what dosage you took (over what time period)? My family physician wants to treat my infection with Iodoquinol, saying that it is the 1st drug of choice recommended in Canada for D. fragilis. I was interested in taking Paromomycin, because it seems to have higher eradication rates, but my doc said that would be the 3rd drug of choice, and she won’t let me take it until I’ve tried Iodoquinol. I’m also interested in trying Secnidazole, if anyone has experience with that drug, please let me know. Thanks very much

  28. 4years ago I was finally diagnosed with blasto and dientamoeba fragillis after 20 years of CFS and all the symptoms that go with it. My initial reading was a 3+. It was my naturopath that finally diagnosed me. I had contracted them from my pet rabbits and guinea pigs I had when I was 14.
    I would like to share what has worked for me personally, so I might be able to help others. I did all of the antibiotics that I could (I’m allergic to penicillin, so I was limited) bit none of them worked. I did herbal colon cleanses etc, which cleared out some but certainly not all, keeping in mind 20years of parasites means there’s billions and trillions of them. After countless nights of surfing the net about these little buggers, I stumbled across a study that find a particular enzyme will break down the fatty cell of these amoebas and after researching this enzyme it is found to be in bee pollen, raw honey and propolis etc. those three things have become my best friends. I ate bee pollen in everything! I paired it with the honey, I chewed on propolis. I stayed away from sugar as much as possible and anything that converts easily to sugar (honey didn’t seem to be an issue), I also stayed away from probiotics. For me, the probiotics just seemed to feed them and the pain was excruciating. I have now had a probiotic everyday since January, and I have no pain at all. I have much more energy and a clearer head (no more brain fog!). My body is still healing as 20 years of damage needs to be repaired but I feel better everyday and I am trying to add more paleo meals to my diet. I also add fresh tumeric to my raw juices to combat inflammation. I have seriously never felt better. I’m about to get retested so I can finally be sure.
    Hope this helps someone! I know we are all different so will need to heal in different ways. Would love to hear from anyone who tries this and has success or even if they don’t.

    Cheers,

    Becky

    1. Hi Becky,
      This is a very interesting information. Would you be able to post a link to that enzyme research?
      How long did it take you to heal by following this diet?
      Boris

      1. Hi Boris,
        Back when I was initially researching them, I didn’t record where I found my information ( brain fog! ) I was so focused on trying to find something to make me well again. It shouldn’t be too hard to find, and as soon as I do I will post it for you.
        It’s probably taken me about 18 months, with a few set backs along the way of course. I can tell you now I have never felt better. I would say that I feel like I can function like a normal human around 95% of the time. I can get up in the morning, perform regular duties, look after my kids, even go to work with no problems. I have zero tummy troubles now. Occasionally I have energy issues, but as long as I keep taking CoQ10, my energy levels seem stable. It’s pretty exciting, especially after 20 years!
        Cheers,

        Becky

    2. This is an edited version of this comment:
      “…I tried both triple therapies [offered by] CDD and they did not work because .. I found out that I have E. Histolitica… There lots of people misguided on forums, and so be careful who you listen to. Because they do not know about the proper drugs or the dosage. It has to be the right dosage. … And for God’s sake, do not do poo transplants…One of my friends went to CDD and he did a fecal transplant, but she got horribly horribly ill from it. Find out what you have and treat properly…

  29. We’ve found a potentially alternative, natural treatment for DF. It’s based on vitaklenz products. (vitaklenz.com.au) Here are some of the ingredients: Black Walnut Green Hulls, Pumpkin Seed, Wormwood, Clove Powder, Pau D’Arco, Olive Leaf, Milk Thistle and Thyme Leaf Powder, Garlic
    Apparently, this treatment was successfully applied to adults as well as children as little as 9 months!
    Here is what’s been advised for our 2 year old boy:
    Half of adult capsule a day (add to a juice) for a period of 60 days.(http://vitaklenz.com.au/vitaklenz.php)
    In addition, 4 drops of Sea Minerals in a juice daily.
    For more information call them: http://vitaklenz.com.au/contact_us.php

    Thoughts?

  30. Hi Everyone, I’ve just stumbled on this website and all these fabulous comments. How relieved I feel. My husband, 3yo daughter, 6yo son and myself have been suffering from these two insidious bugs since my daughter was 3mths old. I’m not going to tell any of the ridiculous stories of my experiences with GP’s etc – I imagine everyone on this site has similar stories to tell about how rude, arrogant Doctors have made you feel like a crazed mad whinging time waster. Thankfully we finally found Dr Catherine Morris in Sydney and the Centre for Digestive Diseases and are on our way to getting rid of these horrid creatures. Our lives have been at a stand still for about 12 mths now. It’s almost impossible to function each day – very tricky to go to work as an operational Police Officer each day when you suffer from these bugs! My husband was also a Police Officer but resigned after 13yrs service because his health and patience levels were shot – which I believe was caused directly by the Blasto and Frag. Now that I know about these bugs and their symptoms, I look around me and I’m certain half of the people I work with, half the people I socialise with and over half of the kids at my sons school and my daughters daycare centre are suffering from these bugs or else some other type of intestinal bug. Needless to say it doesn’t help when the majority of humans are shoving refined carbs, sugars, processed foods and chemicals in their gobs every day. It’s a massive battle to keep my kids healthy when their daycare centre and school allow parents to bring in lollies and wheat/gluten loaded cupcakes covered in brightly coloured icing every time a kid has a birthday. 2 yrs ago, my son’s kindergarten actually sent home a request to parents to ‘bring along a plate’ for a break up party at Easter. The list of food you got to pick from was lollies, sausages rolls, party pies, chips or cordial. Of course I marched in with my platter of cheese, purple carrot sticks, sliced pear etc and it never even got put on the table. WHAT HOPE IS THERE????? And as far as hygiene levels go, if I told you what the general hygiene level was of the people I see in my everyday work (13yrs I’ve been doing my job) you would be SHOCKED. And I’m not talking about lower socio-economic people. I am talking about ALL levels of society. I’m afraid money and social status have no bearing on health and hygiene levels…. So again, WHAT HOPE IS THERE???? We are actually in the process of selling up our worldly belongings and moving to a tiny country town in the South Burnett region of QLD where we will either home school or send the kids to the tiny local school. At least they will be away from the masses and we’ll have more chance of keeping these bugs at bay and undertaking the long road of getting all our guts healthy again. I thank God that we are in a position to be able to do this for our families wellbeing. But enough of my counter productive ranting! What I was wondering about is whether any of you have had experience with having your dogs/pets tested for the bugs and successfully treated? I’ve read about a family who lived in Sydney and then moved home to the USA. The mother found a Vet in America who positively tested their dog. The dog was prescribed a course of Flagyll for three months. Interesting, hey? We have a dog, but we got him at least a year after we all became sick. But he is always vomiting and eating grass (something I was told as a kid, was normal for dogs to do?!?!). I’m now wondering if the reason so many dogs eat grass is because they feel so sick in their tummies and the grass makes them feel better?? I’d love any information that you may have on this topic. This is the most wonderful and informative site I’ve yet found. It is utterly refreshing to see such productive, informative, up to date and intelligent conversation flowing. Thank you all for caring enough to share your experiences and knowledge. The information I’ve learned by reading all the comments has been invaluable and will directly benefit my family. THANK YOU!!!! I’m not sure if I’m supposed to put my details on here, but if anyone’s in the Darling Downs region of QLD and would like to make contact I’d be very keen. The opportunity for some mutual support and conversation about these bugs would be very appreciated on my part.

    1. Thanks for your informative sharing here Katie, generously sharing your experience and contacts. Id be keen to know how you get on after the treatment. I think having these bugs kick starts many of us into a far healthier diet and lifestyle and makes us see how unhealthy the majority of mainstream society is! Good luck in the move, sounds like a good idea to take things into your own hands!
      Angela

      1. (I hope you can post the entire post for the benefit of the readers. and not edit out anything; because mine is a unique experience)
        __________________________
        To those who have been diagnosed with “Blastocystis” or have been told that your ongoing gut-related health issues are a byproduct of “candida” or “disbiosis”: I know what you are going through. What I have to say may be helpful to you. I can attest to you, with from my heard-earned yet painful experience of initial misdiagnosis and wrong treatment, that Blastocystis is not pathogenic. And your problems are from another parasite as it was the case for me. Let me explain. All my life, for 43 years, I was in the best of health. But I got ill in March 2011, after I ate uncooked shrimp Thailand, purchased at a local store in the US. I became deadly ill in 4 days with the following debilitating symptoms: horrible fatigue, diarrhea, mushy, foul-smelling stool, excruciating pain on both sides of the colon, severe back pain, sugar-craving, sensitivity to all kinds of food, and severe left arm pain (which I later found out was from spleen and liver inflammation caused by the parasite), muscle tingling and knee pain, and rashes, and itching of the skin, anal itching. Days after the symptoms, I did three stool tests at the local lab, they CLAIMED they did not find anything, except “Blastocystis.” Then the local doctor gave me 10 days of 500mg Metronidazole (3 times a day). The meds did nothing except make me more sick and fatigued. And then, as my symptoms persisted, I went to one gastro and one local infectious disease specialist: within the next two months, one doctor prescribed Alinia 500mg for 21 days (3 times a day) and a yet another doctor gave 21 of Metronidazole 750! Once again, meds rendered me more ill, and did not alleviate my symptoms. Then, in desperation, I contacted the CDD in Australia, as they promised to offer new options to fight this. Within two months, I took triple therapies. Both therapies did nothing. By then it was Sept, 2011, and I was becoming more ill, unable to function. I had to go on medical disability. But I continued to do stool tests (by then I had 25 stool tests), and now the labs were saying I no longer have Blasto! But I said I was still ill with the SAME symptoms. Then I became very suspicious of the general narrative about Blastocsystis and suspected it was something else. Then I went to see two eminent parasite specialists named Dr. martin Wolfe in DC and Dr. Kevin Cahill in NY city. Both confirmed unequivocally that Blastocystis (if such a thing existed) was not pathogenic at all but said that what I had was E. Histolytica. Eh is the SAME as G. Fragilis. With that diagnosis, I took Tinidazole (2500mg) for 5 days (once a day), and Paromomycin (750Mg) (to be taken on the 6th day) for 10 days 3 times a days (every 8 hours) and then I also took 5 days Albendazole 400mg twice a day. And then within weeks, I began to miraculously recover, and my appetite returned, and my pain and fatigue went away. Then I called up the CDD in Australia and asked why the treatments did not work. They had no good explanation. Then I came across many stories of people who has tried the triple therapies and found no relief. This confirmed to me that it never was Blastocystis but Eh, which is very hard to find. It appears that the CDD did not know that best treatment for Eh/D. fragilis was Tinidazole and Paromo, as prescribed the Center for Disease Control in the US; in my case, Albendazole was given as precaution for some other potentially undiagnosed parasite. Also, you must note that if you have Eh. You must do Tinidazole PRIOR to Paromomycin, because Paromo does not kill the parasites in the tissues. Paromomycin only works in the gut. Anyway, All I have to say is that if you are still, after taking meds, you probably took the wrong drugs, as I did initially or you have the wrong diagnosis. And more often than not, local labs are not competent to diagnose the parasites, as you probably know. Please don’t give up; one thing I can assure you is that once the infection is eradicated, your whole system returns to normal. But it takes sometime for the gut to remain normal. If it does not, you still have an infection. So find out what you have. Good luck.

      2. Nathan, thanks for sharing your experience. I sympathise with your long drawn out experience and glad you are well now. I think you will find E. histolytica is a different organism to D. Fragilis.

        In regards to Blasto, my understanding is it can be either asymptomatic or symptomatic.

        I edited your other posts as this website/blog doesn’t tolerate abusive language or potential slander. Very happy for you to share your experience and concerns. I think you will find people are more likely to listen when you share from your own experience.

        Thanks, Angela

      3. Thanks Nathan .

        I got sick in Brazil 2011. I’m convinced its parasites but all tests negative so far (and I’ve done a lot).

        I’ve seen Borody and a number of other people. Out of desperation in 2012 I tried the four combo secnidazole diloxanide furoate doxy and Septrim. It had a very positive impact on my symptoms by day 3 but by day 7 of the 10 day treatment I could no longer tolerate the drugs (they were messing up my gut and had to stop).

        Since then I’ve been worse due to the effect the antibiotics had on my gut and the parasite symptoms continued.

        Without sounding like a lunatic in late 2012 the symptoms spread from my gut to include my head. I know it sounds crazy but it literally feels like organisms travelled through the gut lining into the blood stream and into my head.

        Anyway, I’m in a very bad state at the moment. I’m in the awkward position of needing to take treatment, without knowing the exact cause, and with the treatment likely to be intolerable by my gut (and make me worse).

        Do you have any suggestions based on what your docs said? (We have very little parasite expertise in Australia in my view)

        I did see a well respected infectious diseases doctor yesterday who may be thinking along the lines of your docs. He’s thinking about empirically treating it with metronidazole, Paromimycin and maybe doxycycline. I’ll take a look at those links you posted.

        Cheers

      4. Hi Paul, I was out of reception for a day so didn’t approve your comment until today – it’s now live, I’ve removed the duplicates. PS what area do you live in- in Australia?

      5. Hi folks! There is a Blastocystis Facebook Group with loads of information on how to treat both Blasto and D. fragilis. There are many members who have been cured by the CDD, and several members in which the CDD protocols have failed. I highly recommend this group to those of you suffering with these parasites.

      6. Thanks Buffy! I searched and found about six different one, can you paste the link to the group you recommend here please?

      7. Thanks Nathan.

        Flagyl was the first drug I tried back in 2012 for ten days. I actually tolerated it fine (I was much healthier back then) but it hardly touched the sides of the infection. Helped a little but nowhere near as much as the four combo antibiotics.

        My problem started with flu like symptoms, enormous non-stop food cravings, vomiting, vertigo, stomach cramps, constipation etc. when I got home I just felt sick in the gut, felt sick after eating (spent months trying to eliminate which foods made me feel sickest – meat, chicken, seafood, sugar, carbs probably in that order). But anything I ate made me feel sick. i felt best when I starved myself. Except I felt this uncontrollable craving to eat non-stop.

        In Oct 2012, the symptoms moved in addition to gut symptoms to include throbbing pain in my head on both sides, sore throat etc etc. Without sounding like a lunatic the day those symptoms commenced I felt burrowing like pain in my abdomen as if organisms pierced the intestinal lining. I’m concerned whatever I’ve got spread to the head that day. In addition to the gut symptoms I’ve had really bad head symptoms since then, swollen neck lymph nodes, pressure n pain in the head, nausea instigating from the head.

        I did try four combination protocol in March 2012 – secnidazole, diloxanide, doxy and bactrim. It had an amazingly positive influence on my gut symptoms (I had this massive toxic die off on day 3 of the 10 day treatment). But I couldn’t finish the treatment. by day 7 my gut was feeling ruined from the antibiotics and I had to stop them. I know that sounds stupid but I seriously felt so depleted in the gut was gonna have to take my self to hospital if I continued.

        Since then I’ve felt worse in the gut. The parasite symptoms came back /continued and on top of that the antibiotics left me sicker in the gut (harder to digest my food, depleted etc).

        So I’m in this catch 22 situation. Need to treat but antibiotics make me worse.

        Nathan I’m interested in Tinidazole and Paromomycin but am buoyed by the fact that the four combo had such a positive influence. What if they’re not enough? What about taking secnidazole instead of Tinidazole? I heard secnidazole had fewer side effects and have read several studies which show its effective against parasites. It was part of the four combo that helped me.

        And I need something to penetrate the head / extra gastrointestinal (in case I’m not a lunatic and something is actually in there). I know flagyl/Tinidazole/secnidazole do but not sure they are enough on their own. I wonder what role the doxy and bactrim played when I took the four combination antibiotics.

        I got ur email address and have sent you mine. I thought I’d post on here in case the discussion is of any interest to anyone else otherwise just email me back.

        By the way, I have/had been concerned I have a helminth infection and have been treated with praziquantel, albendazole and ivermectin. None of those had any effect (the ivermectin helped a little). So given the four combo protozoa antibiotics helped but the antihelminths didn’t I’m working on the theory it’s protozoa. But who knows.

        Thanks Angela. yes I have avoided fruit for ages, now avoid sugar and processed foods too. I can only tolerate a very limited diet atm.

        I’m seeing a respected infectious diseases doctor in Sydney who previously sent some samples to the St Vincent’s guys but came back negative. i might look into it further.

        Thanks

      8. [NB: I have very slight edits to this comment to ensure that the experience expressed here is the writers unique one, and removed absolute statements. Anything in brackets are my inserts, any ‘…’ I have removed at least one word, maybe more.

        Katie, read my post below; it is very possible your diagnosis by the CDD is not accurate; [i found] their testing to not be accurate… BTW, one can catch numerous parasites from dogs, most comonly toxocara….[it was my experience that], CDD treatments were not affective [I believe ]…they don’t use the proper drugs or proper combinations. Infusions [didn’t work for me either, my understanding is that] ..the drugs have to be absorbed into the body for it to kill the parasites. Also, check out the TV series “monsters inside me”; very educational; it covers almost every parasite that has infected… people.

      9. Hi everyone, I thought I’d put an update here to let you all know how our treatments have gone. Just prior to Easter my husband and I undertook the Centre for Digestives Diseases (Sydney) first line 3 drug protocol. I was crying tears of joy by day four/five because many of my symptoms had almost disappeared. My husband was the same. For the week after the med’s my life felt like it was back to normal again – for the first time in many years. Then during the Easter break both my children took the required paromomycin for their weights over a ten day period. We’ve all had a couple weeks since the med’s ended and I’m very very sad to say that we’re are all very sick again. In fact, the symptoms have come back far worse than they were before. I’d like to point out that our diets are grain free, chemical free, number/additive free and sugar free. Yep that sounds very boring, but you’d be amazed at the awesome recipes you can find for this type of diet on some of the brilliant websites and cookbooks that are available. We take Metagenics probiotics and eat as much cultured food as possible. We also have minimal starchy foods. I tell you this because I believe that food has a direct relationship with how bad your symptoms are with these two nasty bugs. So even with a spot on diet we are all back to being very ill again. The brain fog is the worst symptom, losing track of your thoughts mid sentence while speaking to work colleaugues makes you look rather foolish! So we’re going to have the PCR stool tests done next week which I am more than certain will come back positive. Here in QLD I am only aware of QML doing the PCR testing. Does anyone know of a specialist pathologist in QLD who uses fixative? We know of Histopath in Sydney, but it’s just that bit trickier to get our run of the mill GP here in Toowoomba to organise a request via them. Of course I could go back to the fabulous Dr Cathy Morris at Turramurra and do the whole phone appointment thing again, but it’s proving to be a costly experience. I think that so far these bugs have cost us tens of thousands of dollars in natural therapies, time off work, Dr’s fees etc. I also realised that our constant pinworm infestation has never been eradicated because I have been using Combantrin pyrantel all this time, after a Chemist told me it was the best med to use. I now realise (via all the wonderful info sharing above) that we should have been using the other Combantrin with the medbenzaole (have I spelt that right??). So we’ve had our first dose of that delicious worm choc (not!) and I’m hoping that we might finally knock out the worms as well. Of interest, Dr Morris ordered X-rays of our kids prior to taking the paromomycin. They were found to be constipated, even though they were doing icky green poos every day. Bizarre? So we had to do a week of suppositories and Osmolax because she explained that there’s no point taking any meds if you’ve got stinky aged poo backed up in your intestines. I don’t mean to gross you out, but what came out of my kids bottoms was extraordinary. It was like thick rotten putrid food. I imagine that it was several months olds. So that may be something for you all to consider for yourselves prior to treatments. So in a nutshell, so far our experience is that I believe the first round of med’s hasn’t worked and in fact has stirred up the bugs more than ever. I’m wondering if anyone has an opinion about this? Do I try the second line of treatment and continue knocking out our intestinal systems or do we just try to live with this? Is there anyone out there who lives with Blasto or Frag in their guts and just gets on with it and takes multitudes of natural therapies to keep your head above water? To be honest, I’m a bit lost at the moment and probably because I feel so inflated that the first lot of meds hasn’t worked. I’d love to hear any input the community out there may have? With kindest regards, Katie Jensen.

      10. Katie – could it be that you have the symptoms from detoxing from the long period of your infection. I’ve had terrible symptoms in the past from detox regimes! Hang in there, I think you are doing a great job with diet etc.

      11. Hello Katie, I too am in Qld and would like to contact you for a chat.

    2. That is supposed to say deflated, not inflated. See, my brain is just not functioning properly!!

      1. Katie, just a thought but you may be experiencing ‘die off’ of the gut bacteria with all the excellent probiotic and fermented foods you are eating. Perhaps you are going too hard too soon???? I’m no expert though!
        My kids both got very sick with this and we still have issues getting the balance right. Recently my little guy started a probiotic and he was in agony from the die off of good and bad gut bacteria that we had to put him on charcoal and reduce the dose. He had terrible, terrible gut pain and wind from a couple of biokult tablets. The activated charcoal reduced the wind significantly. Apparently he is acidic so his stools make his bottom red raw. He is also gluten, dairy and salicylate sensitive as a consequence of having the parasite for a long time.
        Anyway, just a thought. Perhaps someone how knows more about this ‘die off’ might be able to add more information as I don’t really understand the whole issue.

        Best wishes.

      2. Katie, So sorry to hear about your case: I can assure that Blasto is not pathogenic, if that is the diagnosis you have received. Please read my post, about why both triple therapies from CDD failed. So please dont try the second line treatment. It will only damage your system more. (One should never take Baktrim because it is one of the worst antibiotics, if that is what they give now as part of the second line.) Your children were given Paromo on its own by the CDD? This is simply not right. Or do you have an accurate diagnosis for Eh or D. Fragilis? The CDD is quite bad at diagnosing correctly and giving the proper dug protocols. And they seem to ONLY find D. Fragilis or Blasto! But Never anything else!
        My point is there are several other parasites one can get, which cannot be easily detected (whip worm, Ascaris, Toxocara, or even Strongylodies). So it is best to try an empirical course of drugs to rule out a host of things (read Dr. Martin Wolfe’s paper link: “Chronic Diarrhea in Travelers: Postinfectious Irritable Bowel,
        Malabsorption, or Parasites?”
        here is the link:
        http://link.springer.com/article/10.1007/s11908-006-0067-8#page-1).
        Based on your description, your did not clear whatever you have. Because if you did, the symptoms would disappear within weeks, and you get steadily better. Very likely drugs did not work, as they did not work for me. If you have Eh or D fragilis, you need to try the combination Tinidazole FOLLOWED by Paromo (that is the ONLY correct treatment if done correctly), and if you dont recover with that combination, that means: You have something OTHER than Eh or D. fragilis. So my next suggestion is Albendazole for 5 days (you need to look up how to take that in which dose). These two protocols can rule out a myriad of infections.
        The biggest mistake many make is that they assume (based on an initial lab diagnosis) that they have just Blasto (D. fragilis). They often dont suspect that they MAY carry something else as well. According to the best literature, if one gets a parasitical infection, the source from which it came contains more than one parasite. But tests never find them all. Hence the importance of the empirical treatment.

        Also, you need to find out where you got this from, so you dont expose yourself to it again and get reinfected.

      3. Katie Jensen, If you have anal itching, it is not from pinworms. It is from the other parasitical infection itself. I had it quite bad. It itched mostly at night, and sometime during sleep. One important point: I knew my infection did not go away until the anal itching completely cleared. Needles to say, the CDD triple therapies did nothing clear that.

        Please let me know how you will proceed once you read my reply to you below.

      4. Thanks for the comments and my apologies for the delay, I’ve been out of range and had no email or phone. Angela, is it possible for you to pass my email address directly to animal9992014 so that we can make contact. It would be so lovely to be able to make personal contact with someone here in QLD who may be close enough so that we can meet and share our ideas and anguish!

        I did some reading into die-off reaction as I thought that we may have all suffered from this, but it’s certainly not that. We have the exact same symptoms we’d always had but now far worse. In addition, the itching bottom is unbearable – which leads me down to Nathan’s comments below which I’m about to respond to. The entire family is almost going mad from the itching bottom problem and there is not a thing that makes it stop. I’d rather have a dose of capsicum spray in my face, because at least is only burns for a few hours and then goes away!

      5. Nathan, thank you for all the information! To be totally honest, my headspace is so fogged at the moment I’m having trouble processing it all. I’ve got two extremely ill kids and a husband who’s not much better and myself of course. Our positive tests to Blasto and D.Fragilis were all done via PCR testing performed by QML labs here in Brisbane QLD. Though I should point out that my daughter has not yet tested positive to anything, though she has all the EXACT same symptoms. We even did a 3 sample stool test whereby the samples were placed directly into fixative and sent off to Histopath pathologists in Sydney and even those came back negative. But at that time she was lucky to excrete a ball bearing sized stool every few days and I have a feeling that there was no trace whatsoever of any bugs in her samples given the consistency of them and the fact that her insides were almost totally blocked (later found out by x-ray). In my stupidity, because she would swing from loose stools to hard pebbles every week or so, I didn’t realise she was actually constipated until we had the x-ray done. We had all been tested multiple times by GP’s over the past few years who were sending them samples off for the old fashioned microscopy/culture testing – even after my pleas to them to find out how we could get the PCR/fixative type testing done. One of the GP’s told me there was no such thing and the only option left was for us all to be knocked out and have stomach biopsies done! Great GP he was…. So I’m about to read through all your info again and read the links as well and this may give me some more clarity on this whole issue. We are having PCR tests done this week and I guess the results will speak for themselves, but I’m more than certain they will come back with Blasto and Frag again. But now reading your story about the other bugs I’m a bit more mixed up. We’ve never left the country, in fact we’ve never left the Darling Downs, so I wouldn’t have thought we’d be susceptible to any other bugs that seem to be more ‘tropical’. I lived in Doomadgee and Mornington Island in the Gulf of Carpentaria for two years and was exposed to all sorts of tropical bugs and was never sick once. Anyway, I’m off track now. I’m going to get stuck into reading and will let you know what our results come back as again. Out of interest, how would you suggest we get tested here in Australia? There is the option to use fixative on the stool sample using a specialist pathologist such as Histopath – is there anything more accurate or better actually available in Australia? Kindest Regards, Katie.

      6. Hi Katie,

        My daughter (with DF) took Qlioquinol, 10 days. Symptoms cleared right away. Tested negative. Within a month symptoms came back, and she tested positive. (got reinfected)
        She is eating glutenfree and diary free now and the worst symptoms are gone. Not too much sugar and if possible we avoid additives, because we see a direct reaction.
        In short, she didnt get rid of the DF but with a diet it is doable.
        Some people get relief from certain herbs. In our case nutmeg, (use herbs in small portions!)
        To be sure to eliminate any pinworms in a natural way, eat fresh garlic or better, if you can find it, green fresh papaya for about a week.

        ps my son got infected too (only after a year!) but he has no symptoms other than an occasional tummy-ache.

        Julie

      7. Hi Katie
        I cannot speak for your lab however the PCR testing should be done with a ‘test kit’ that picks up the DNA of 4 parasites: Giardia intestinales, D fragilis, Cryptosporidium spp and Entamoeba histolytica. And this should be very accurate.

        We have been trying to fight D fragilis off for a long time without any success (so, guess we are sitting in a similar boat). We are currently surviving by taking a herbal parasitic treatments. I don’t really think that this will kill the parasite however my kids are finally able to attend school again, have regular bowl movement and life is more cheerful. I am still looking for a long term solution…….
        Miffy
        PS I had a friend with Blasto who was super sick. She was able to clear with the CDD treatment and she is happy and healthy again,.
        PS2 I also give my daughter a bit of psyllium into her breakfast cereals which helps her to be a bit more regular

      8. Hello Miffy,

        Could you tell me what herbal parasitic treatments you and your children take?

        Julie

      9. Hi Julie
        Sorry it has taken me so long. My kids are taking Intestaclear (Orthoplex) 2 capsules/ day. It hasn’t cleared the infection in 4 month and I don’t think it will but symptoms are just SO much better (and kids say they feel better as long as they are taking it). We also tried Parex however this had a minimal effect. Also, both kids had massive Pinworms. We did lots of stool tests and none of the tests picked worms up nor did we see any crawling out. We gave Mebendazole to the kids and the next stool sample had a whole worm farm in it. We sent it to the lab and again they did not find worms (although blind Freddy would have seen them). I strongly believe that this is the reason why the kids cannot clear DF with antibiotics. One week after treatment they always test negative and 4 weeks after treatment they test positive. DF has been shown to be present in pinworm cysts (85% in a Swedish study).
        We are now trying to properly deworm the kids before attempting another round of antibiotics.
        Will keep you posted!
        Miffy

      10. Hi Miffy,
        Thanks for the info. I’m going to ring QML this morning to check on their testing process. It’s just such a relief to have people to share all this with who tell about their direct experiences and knowledge.
        What herbs do you have your kids on? We did Metagenics Parex for about four months straight – it alleviated symptoms for a few weeks and then we went back to the normal level of illness that we’d been encountering for two years. The issue with tablet style herbs is getting them into a 2 1/2 yr old. I crush them and use rice malt syrup to try and mask the taste, but it’s utterly disgusting. Our naturopath has been mixing up a brew for two years now and it doesn’t seem to do a thing – perhaps it’s time to find a new naturopath. The kids are now suffering from very big behavioural issues – anxiety, panic attacks, obsessive compulsive tendencies. Our son’s teacher called us in to ask if we were intending of taking him to a paediatrician to have him checked for disorders on the autism spectrum! I know in my heart of hearts, that all these changes in my kids are purely related to these bugs. And in fact, there is a Doctor in Clayfield – Dr Frank Golik – who is testing for these bugs in his treatment of children diagnosed with autism…..very interesting. But there’s a year long wait to see him. I know myself that my behaviours have changed. I worry, I chew my nails (something I never did), I suffer anxiety and panic episodes where I can barely breath, have trouble being reasonable and instead make rash decisions, have tingling limbs and joints, can’t concentrate, have shocking memory loss and my hair has thinned out by half (something that is also happening to my son – which I believe is because of malabsorption). My husband has all the same issues. We went from being extremely healthy, fit, well, sane people to pretty much overnight plummeting into a very dark place of grey faced, dark rimmed eyed, scaly rashed skinned beings. It’s all a bloody great nightmare really!
        I would love to find something that will just alleviate the symptoms for my kids sake, just so they can experience their lives as normal again. Our daughter has been ill since she was 2 months old. My heart just breaks for them when I see them missing out on so much life.
        To a different topic, is there anyone out there who has advised their school and or daycare centre that their child has these bugs? And if so, is the centre now deliberating as to what to do about this (ie excluding the child until their result comes back negative)? I’ve read about daycare centres in America who have an exclusion policy for these two bugs. But it seems a little unfair given that there are probably several other kids in every centre who also have this bug but haven’t been tested or treated.
        Again, Kind Regards,
        Katie.

    3. Thank you for this post! I had blasto 2003-7 and then after having kids, we got on the fragilis train. Son has been treated twice and daughter once and now symptoms back. And I’m sure I also have it plus our 3 month old-what to do? I’m breastfeeding. Older son doesn’t feel well (he is 5) but we will reinfect him as can’t all get treated. Our only option is natural treatments this time…and even with those, I’m not sure if I can take them and the potential for our baby to reinfect everyone when he gets a bit older is huge too! Oh dear… why doesn’t anyone else wash their hands? Why are they all fooled to thinking the more bugs kids get the better? I wish I lived in the blissfully ignorant state others live… I was wondering how your daughter is now having had fragilis since she was 3 months old? As my son is 3 months old, I am worrying terribly what the effect of this bug will have on him developmentally from having it at such a wee, precious age! Thank you.

      1. Hi Sue, Im sorry to hear that! OK if you can’t treat with medication then you can work on healing your guts with food, and other dietary changes. Could you look at reducing sugars in your diet – any refined sugars and even fruits for a little while? Bone broths/stocks cooked with lots of bones can be very healing for the gut too. I know there is conflicting info about taking probiotics while infected, but you could defininetly increase intake of probiotic rich foods such as sauerkraut (raw), kefir (or yoghurt), kambucha! Takes a little effort at first but might help with symptoms. I wrote a little more on this here: http://natureglow.com.au/2014/02/06/how-i-healed-my-gut-after-intestinal-parasites/

      2. Thanks Angela for your thoughtful suggestions. I’ve hatched a plan since I last wrote and have found some herbs I can take so at least that will help to get the numbers down, and hopefully my son’s symptoms. One thing that worries me is that for a month he seems to have had nausea and headaches every day, for some part of the day. This also coincides directly with him being bitten by a tick…he first complained of a sore head and then we found a tick on his back. He also had a cold at the time so we thought the sore head was related to the cold. Now the cold is over but the head and nausea and sore tummy remains…so I’m not sure if the tick has also caused an infection resulting in headache and nausea or if these are symptoms which have come from the dientamoeba fragilis. Are you aware with people who get headaches with d frag, can they happen daily or are they just a sporadic thing? I’m not keen to give him antibiotics for a possible tick related infection if it I just due to d frag as that would damage his gut further. Any advice regarding knowledge of people’s headaches and nausea would be very welcome if you have time! Thanks so much, Sue Ps for info of others out there, I cleared blasto from cdd approach but was 2nd attempt at drugs. Couldn’t have a baby while I had blasto…now I have 3! So I love prof borody! If not for him, I would not have these treasures!

      3. If your child was bitten by a tick, you may need to have test for Lymes Disease. It is hard to diagnose & specimen may have to be sent to USA. Ask your Dr. Recently there was an article on ACA about Lymes.so you may be able to research it!

      4. Hi again Sue. I can not implore you enough to have the tick bite investigated. Our current GP is Dr Greg Emerson in Brisbane and he specialises in Lyme Disease amongst other ‘different’ things. If you can afford a consult with him it would be well worth the money. I think he does phone and Skype. My husband had two huge red bullseye tick bites last year and at the time a Dr gave him a seven day course of Tetracycline. We’ve since found out that it should have been a six month course and that it’s most likely too late now to take the med’s. Dr Emerson explained that you can live well enough with the bacteria in your blood but it’s vital that you remain completely healthy so that the bacteria doesn’t take over and make you sick. Now to the headache issues, the headaches I’ve had with D.Frag and even now after clearing it have been horrid. They begin at the base of my skull and travel up the back of my head and into the back of my eyes. They feel like dehydration or hangover headaches and I have them every single day. After seeing Dr Emerson a few weeks ago I learnt that the headaches and ringing ears and sinus trouble I’ve had are most likely caused by mould spores living in my body. If you google mould toxicity or check youtube for clips on mould toxins or sick building syndrome you will be amazed at what you see. My workplace has been full of mould for about five years and they just keep cleaning it up (and it’s a State Government building!). The building is constantly full of sick people with watering eyes and complaining of headaches…..makes me wonder?? He also explained that after the med’s from CDD all the good stuff in your gut gets knocked out which leaves a nice environment for bad moulds and bacteria to thrive in. Hence the reason why it’s so important to get into probiotics and a Weston Price/GAPS type eating regime. So I’m currently waiting for results from the USA (via a frozen urine test) as to if or what type of mould I have in my body. Dr Emerson has said that if I do have mould it will be a matter of taking the correct meds to clear it up and then fingers crossed, the head issues will clear up as well. I’ll keep you posted. Just quickly, back to the Lymes issue. Dr Cathy Morris in Sydney is also very well versed in this issue. She’s at Turramurra. We also had consults with her regarding the Blasto and did these over the phone. She has patients all over Australia that she is treating for Lymes and Blasto/D.Frag. All the best!

      5. Oh Golly how scary! I have an appointment with Dr morris at the end of September actually so that is positive. I was considering going to see dr mayne in Laurieton as he also specialises in lyme. But I would worry about them treating my son with antibiotics as a precaution if there could not be definite diagnosis of tick illness because it would further damage his gut. He never had a rash…I checked daily…just a small red bump which was itchy afterwards for about a week but what I understand to be a typical little bump and nothing of the bullseye type. We live in a very bushy area so tick bites are the norm.in our neighbourhood. I have heard of Dr Emerson…I’m a nutritionist and have lots of blasto and frag clients from around australia but I usually always recommend they do the drugs then heal up afterwards-but I can’t do that this time! Now the mould thing…so so scary! We used to live in a really really mouldy house. It would send the clothes in my son’s room mouldy and all the clothes in our cupboard smelled of mould as soon after they were washed. I ended up keeping everyone’s clothes on the floor and ended up moving. In our new house, I engaged a mould expert to measure levels of mould and he determined our new house was light and airy but some of the furniture which had been at the old house needed to go…so we got a new bed etc. So…we have no mould really in this house we have been in for 2 years…I am vigilant and clean with white vinegar and clove oil…and keep it all aired. BUT-what you are saying is that we could have ingested so many mould spores at the old house that we are still affected? And will always be unless we take…some sort of treatment? Ah my heart breaks thinking of the mouldy environment my toddler son lived in whose health is now declining. Thank you so much for your help.

      6. Oh and I also have the funny ears and sinus and scratchy throat. My son’s headaches have only just started with the return of the frag or else the tick bite. Do you think the build up of preexisting mould could really be the issue and that having frag again has set it off? We used to often call colds ‘moulds’ as thought they were from mould. I asked the doc once if he could see if the kids ear infections were due to mould and he laughed at me. Can kids be treated with mould medications? I understood them to be harsh but the thought of my son having headaches every day forever paralyses me with fear! The poor little man :o( I really thought this time that the head and sinus and scratchy throat were frag symptoms as we had frag at start of last year and it all went away when we were treated…until I returned. Oh dear…just when I was beginning to feel more hopeful today I could get him better, I now see the issues could be huge. At least he has a healthy diet I guess. Thanks again, Sue

      7. Also my son’s headache is something to do with his eyes…he keeps pressing them and rubbing them but can’t explain really how he is feeling.

      8. Hi Sue. The mental health of our whole family suffered because of Blasto and D.Frag. It was like someone flicked a switch in our son and completely changed his character. He now displays very intense, sometimes destructive behaviours and is highly emotional – to the point that his school teacher had a word to us about having him ‘tested’ to see if he was on the Autism spectrum. I realise that you don’t just get ‘tested’, but I totally got what she was talking about. He was having huge meltdowns in class, has OCD, has a very high level of intellect but is unable to express it and the list goes on. Interestingly, there is a Dr in Brisbane by the name of Frank Golik who I am told by another Dr only sees autistic children and one of his first tests that he carries out is a fecal test for Blasto and D.Frag. It’s hard to tell what our daughters baseline character would have been as she’s been sick since 3 mths. She is now almost 3yrs old and has a character almost identical to her brother. I gotta say, it’s totally exhausting/draining having kids like this. The worst of the physical symptoms for her was the constipation. When she was tiny it was green foaming poo (continually blamed on lactose by Dr’s – even though she was on lactose free formula) but over the last year she has suffered chronic constipation. Along with this when she does manage to poo, it is rock hard pebbles coated in yellow mucous. My son was in the same boat regarding the constipation. They both looked deathly white with big dark bags under their eyes for the last two years – but then so did my husband and I. This whole issue surrounding these two bugs is bigger than Benhur as far as I’m concerned. I talk to other parents and point out particular behaviours or physical symptoms that their children have and give them a little bit of info about Blasto or Frag but the parents are simply not interested. In fact, there are adults who choose to now to speak to me because they think I’m a whacko – and I can honestly say I didn’t rant or rave about the bugs, I just quietly dropped a few bits of info into the conversation. Plus it doesn’t help that my sons school has no soap in the toilets! That should be a criminal offence! I’ve written a very recent post about where our family is up to and listed the herbal meds our naturopath got us on to – they worked a treat. Have you had the whole family all tested simultaneously for the bugs via PCR??

      9. Thanks so much, Katie! Wow, our daughter was doing those mucous coated pebbles a couple of months ago! We weren’t sure at the time if it was a parasite or phlegm coming down from her cough. I like you see parasite kids everywhere…freaks me out! And yes parents don’t want to know or believe and I feel crazy too-but they all just look at the symptoms the parasites cause…constant colds, green snotty noses, ear infections and crazy behaviour. Thanks I will go check out the supplements…In fact I may have already written them all down…I read all these comments and have written down every supplement that anyone has taken to research them :o) Family is all being tested by Histopath at the moment…so not pcr but is fixative. I think the only pcr texting is metametrix which is about $400 a pop? I tried to take a story about parasites to the papers but they weren’t interested…said I needed proof it is an epidemic…but how do you provide proof for something that is under diagnosed and misdiagnosed?!! Cheers.

      10. Oh yes and my son also seems ocd (but I always feel I made him that way due to making him wash his hands all the time or using hand gel). Agh I could not handle that about school! At least they make them wash hands at our preschool. One reason I refused to send my kids to day care as was so worried about parasites! Anyway I do worry about that with my 3 month old son…that he may develop autism as a result of getting this so young.

  31. Nathan
    Glad you recovered!!!
    In your summary you are mixing up a few things:
    Dientamoeba fragilis and Entamoeba histolytica are two totally different organisms!
    Do you have new information regarding the treatment of D fragilis or is your experience relating to Entamoeba histolytica?

    Both parasites can be best found via PCR analysis in the stool sample which detects the DNA.
    Regards
    Miffy

  32. Hi Miffy, Thanks for you message. I know some other doctors who are not properly trained in detecting parasites often claim that the D. Fragilis are Eh are not the same: But that is simply not true. They are NOT “totally different.” In fact, both Dr. Martin Wolfe, and Dr. Cahill–two world-class parasite specialists– stated that many mistake Eh for so-called D. Fragilis. Cahill does not even treat D. Fragilis. Indeed, D. Fragilis treatment, if it is treated at all, is the SAME as Eh treatment. (Tinidazole and Paromo).

    No, I disagree: PCR testing does not find Eh or D. Fragilis. Both doctors –as well as a well-known parasite specialist dr. In italy I also saw when was about to give up on my illness–repeatedly said that even PCR testing is ineffective, as Eh turns off our immune DNA responses to the parasite. I am testimony to that. I did PCR testing several times, and they all turned up negative. So testing is not to be trusted. This is why all three doctors suggested that EMPIRICAL treatment is absolutely necessary in the absence of parasites in tests, depending on the symptoms. So it takes a skilled doctor with experience to know this. Please do not trust PCR testing. I say this with assurance, as one who watsed more than $30 thousand, doing many different kinds of tests at so many labs in the US and abroad!

    Anyway, if you think you have D. fragilis, more likely you have Eh. or something else like whip worm/trichuria, which are even more difficult to find. And the key is, if you symptoms persist, but tests say you are negative, it means you still have it.

    At any rate, the treatment for EH/D.fragilis are the SAME.

  33. This is one of the most concise best pieces I read on parasites by that internationally recognized tropical doctor Martin Wolfe: See what he says about D. Fragilis and the treatment. But note what he says about parasites not showing up in stools, and what that means.

    “Title is:

    “Chronic Diarrhea in Travelers: Postinfectious Irritable Bowel,
    Malabsorption, or Parasites?”
    here is the link:
    http://link.springer.com/article/10.1007/s11908-006-0067-8#page-1

    If you cannot find this piece on the internet, I would be happy to send the PDF.

  34. Miffy, here an important paragraph from one of the oldest books on parasites on E. Histolytica, and how it “degrade” the immune system, evading detection:
    “Intestinal invasion of E. histolytica results in a prompt local secretory antibody response. Circulating antibodies can be demonstrated as early as 1 week after the onset of the “invasive” amoebiasis in humans and experimental animals. All immunoglobulin classes are involved, but there seems to be a predominance of IgG antibodies. However, it has been demonstrated that cystein proteinases of E. histolytica can degrade both IgA and IgG antibody, which may limit the effectiveness of the humoral response.”

    Note the last sentence. And IgG can be detected only in “invasive” cases, and even if it is invasive, it does not produce antibody and response. No wonder even doctors dont know this stuff. And in most cases people dont have “invasive” Eh, in the precise sense of that terms; that is it is not deeply invasive, invading the liver as well, which means they are simply in the tissues of the lumen. In that case it is impossible for PCR testing to detect it. But either way, one needs Tinidazole and Paromo for that. Paromo only works on the lumen of bowel. And cysts in the tissue need the cyst drug Tinidazole.

    Of course it also good to get one’s “total IgG”s checked in a blood test, and also one’s esinophilia.

    If esinophilia is high, it is almost always a worm, a nematode (class of round worms) or tremadote (class of “flatworms” such as liver flukes). But in most cases even esinophilia does not show up after a while.

  35. To Paul:

    Here is what I took from the CDD: All in late 2011.
    Nitazoxanide, 500m; Furazolidone; 100mg; Secnidazole; 500mg; all three drugs 3 times a day for 10 days;

    Then: Diloxanide Furoate 500mg 3 times a day; 10 days Secnidazole 400mg 3 times a day; 10 days Backtrim DS; twice a day; 10 days.

    I am–as I found out now– one of many now who were not helped by the CDD protocols, and I was quite justifiably upset. I felt I was sent on a wild goose chase, damaging my bowel more. Also, note that not only are these drugs ineffective, the wrong dosage was prescribed (I weight about 175). One has to take the right drugs, in right dose, according to weight. When I questioned the CDD about why these these things, they could not come up with good answers. I was quite harsh with CDD, because I found that head Dr. Borody does not and neither do his associates TROPICAL medical training and experience in testing of parasites; he is simply a gastro doctor. The CDD also keeps changing protocols. I know that now they prescribe a different combination, which Includes Paromo, but without Tinidazole. Like most other places, the CDD sends out stool samples to a distant lab. (This is my experience, which can benefit others, I hope.) And now we know that stool tests or even PCR testing cannot detect all the parasites. The amazing doctors I saw Wolfe and Cahill examine “fresh” stool taken within hours, and they have their own labs, just a few feet from their offices. In other words, only a few doctors know how to diagnose properly and treat.

  36. How to take Tinidazole and Paromomycin: Center for DIsease Control USA.
    http://wwwnc.cdc.gov/travel/yellowbook/2014/chapter-3-infectious-diseases-related-to-travel/amebiasis

    http://www.cdc.gov/dpdx/amebiasis/tx.html

    If you are still unsure about how to take the drugs for Eh (d. Fragilis), dont trust me; trust the Center for Disease Control (CDC) in the US. Look at the above link: Take this to your doctor and ask if they know why these two drugs Tinidazole should be “immeidately” FOLLOWED by Paromomycin, and in which dosage, and at which times, they should be taken.

    Note Tinidazole should be taken only once a day for 5 days; and on the 6th day, Paromo should be taken every 8 hours for 7-10 days, RELIGIOUSLY; yes every 8 hours, given half life of the drug).

    And ask also the doctor why if one does not take the drugs this way, the infection will remain. Ff course doctors dont do their homework! they hardly read anything.

    Once again, if you took just Paromomycin on its own, you surely have the infection.

    One can of course easily google this info. and find out why these should be taken this way; also, I would not take Iodoquinol, which has many many failures, which is more toxic.

  37. Nathan I’d love to get a copy of that PDF article and chat with you further.

    My symptoms began in Brazil in 2011 and I’ve tried lots of tests and some treatment but am feeling terrible and haven’t resolved things.

    I tried to post a response but it didn’t go through.

    Moderator can I give him my email to get in touch with him that way.

    Thanks it would be a big help

    1. Also Paul, I mention an article in my post which is written by St Vincent’s doctors. I wonder if you could contact him and see if he could help with at least an accurate diagnosis. I empathize with your situation and hope this post gives you some leads and hope. In the interim we have all found relief from removing additional sugars in our diet, low fruit and reduce any refined processed products, basically giving your system a break while it attempts to maintain a balance… Angela

  38. I meant to add this bit of info into my other posts, so here it is now. I spoke with a chemist at the compounding chemist in Sydney who supply the med’s that the CDD recommends for Blasto and D.Frag, he said to me that he believes the CDD protocols are at the forefront of fighting these two bugs but that he would estimate at least 30% of cases need the second line and sometimes the third line treatments. Further to clear up a question made by Nathan Scott, the CDD didn’t prescribe the paromomycin for my children as the CDD doesn’t treat children. Paromomycin can be prescribed by a GP as per the dosages set out on the medications database that they access via computer. Paro is listed as one of the drugs used to treat Blasto and D.Frag in children. Now to the dog testing topic. Our Vet contacted the two pathologists they use and neither of them had ever heard of PCR testing for Blasto or Frag in animal stools. My next step is to contact the University of QLD in Brisbane who I think was responsible for the paper that I read somewhere online whereby they tested all the dogs in the Brisbane Council pound to see what rate of Blasto was present in the dogs. It seems obvious to me that there must be somewhere that tests if a University did a study on it??? I’ll just keep making phone calls and hopefully strike it lucky soon! Kind Regards, Katie.

    1. Katie,

      It will be helpful for you to read my comments to Paul today; and also general information about how to take the drugs and why you should eat well during meds.

      Your case is again testimony–your daughter’s specially–that tests often fail detect parasites, and surely they dont find all of them. And PCR is NOT an exception!

      So empirical treatment is the best. But do it the right way, with the right drugs.

      Your situation is so sad and tricky, because your kids are sick as well. I would suggest you and your husband treat yourself first. And treat your children later. You have to be extra cautious when changing the diapers. Clip your nails short. And make sure kids wash their hands properly after using toilets.

      And more critically, avoid suspicious things you have been eating, including salads and any other uncooked things, yes even at home. Avoid juicing etc, as well. Of course never sushi and never medium rare steaks! Surely it is whatever you ate–it was probably not water unless it came from a lake–in your own hometown.

      So ask yourself: what on earth you have done out of the “ordinary” within the period you got sick? What (and where) did you star eating recently that you did not eat before?

      I say this because if you dont know quite know where you got it, you (and your whole family) will more than likely get reexposed to it again, and get reinfected, even after the meds.

      So as a general rule: DO NOT EAT ANYTHING THAT IS NOT COOKED. This is also my advice to those who got infected but still dont know where they got it. If you never travel to outside of the country, then surely the culprit is right around you. And you will get reexposed to it if you dont change any “new” habits of eating and drinking you may have adopted recently.

      “If you cannot wash, peel, boil, and cook it, you dont eat it.” Period.

      1. Hi Nathan, Thanks again for all this information. In regards to where we got it, I’m pretty certain we picked it up from some sickly kids at a Christmas party we went to. They were family members, so it was all cuddles and kisses for the entire day. Those kids have been sick since then as well. For whatever reason, we have had the constant pinworm infestations since we first became sick – I can’t explain it, none of the Doctors or naturopaths can explain it. But in regards to hygeine and food, we don’t eat uncooked foods (we are a combo of GAPS and Paleo and have been for two years), we use our own individual towels that are washed every third day in hot water with napisan (same with sheets and underwear), we all change our underwear twice daily, the toilet and bathroom are cleaned down with disinfectant every week and hand washing is a regular occurence in our days. We have a dog, but we only got him well after we all became sick and I am very very careful about the kids not going near the dogs orifices and if they’ve been playing then they have to scrub their hands and lower arms immediately. So I am more than certain the infection did not come from around us or are we being re-exposed to it. What I think is that because we saw so many Dr’s in the first two years who failed to do any tests and said it was likely we had Giardia (and then prescribed us with Flagyl, then more Flagyl…..) the Blasto and D.Frag have taken a huge hold on our gut systems. We’ve been tested for the E.Histolytica and it didn’t show. But what we haven’t been tested for is Clostridium Difficile which we are having done this week. And I think that the C.Diff has flourished in our lower intestines because of the overuse of the antibiotics. C.Diff is a very big probelm in aged homes and hospitals at the moment. We are off to see a Parasite specialist after the results of this next round of PCR is done, at which time I will be fully armed with all the info you have so generously provided. Can you believe that most of the Doctors we had seen up until now had no idea about any of this stuff? In fact, one who was a well-reputed local Doctor thanked me for educating him about these bugs.
        What I do want to point out here though is that PCR testing (done by QML pathology in Murrarie in Brisbane) has found both Blasto and D.Frag in myself, my husband and my son. So it obviously works to find D.Frag, because the proof is in the pudding in our case. I think my daughers intestinal issues regarding being blocked up were what made her negative result come back. But we will find out again by next week if in fact the PCR testing picks it up this time around. Our diets are so healthy (other than when the kids have birthday cakes shoved in their mouths at school/daycare or when a relative gives then a random lolly treat) that there is pretty much nothing else that we can do dietery wise or in our lifestyle to make things better. I have friends who even comment that they can’t believe we manage to live the way we do with kids in the house (given that kids aren’t too good are being regimented or happily sit eating green vegies and chicken breast each night for tea).
        We really are scratching our heads at the moment. But what has given me much hope is all the info you and this site has provided and the fact we are finally going to speak to a parasite specialist – who hopefully will be open to researching these bugs and then contacting fellow colleagues for assistance if need be.
        Kindest Regards,
        Katie Jensen

      2. Katie, so interested in the parasite specialist – be very keen to know how you go!Ive been thinking what an important job that would be. I seem to be meeting more and more people with parasite issues and no one to turn to for proper diagnosis or treatment!

    2. Katie, I cannot reply to your most reply; it does not have a reply icon there; I wonder why!

      Anyway, I stand firmly by my earlier statement about the unreliability of PCR DNA testing. Surely what you have is NOT Blasto; if it is D. Fragilis, it is something else. Most likely Eh.

      I dont want waste your (or my) time repeating what I said already. You are of course free to do what you wish. CDD drugs will not work, as the first protocol already did not for you, just as it did not for me.

      But do Note this key point: Blasto drugs are the SAME drugs CDD gives for D. fragilis and Eh! Can you believe that? Ask yourself why this is so?
      The simple reason: CDD simply does not know know what they really treating when they say they are treating Blasto or D. Fragilis. They are shooting in the dark.

      When I told them I still had Eh after taking both triple therapies, they said well, “if you had Eh, the drugs should have killed it.” THat was their only answer. They just dont know their drugs dont work for either. Because they are the wrong drugs, and wrong dosage.

      If you wish to try what I recommended, please read my recent posts to Paul. Also, I have sent several key PDF documents to Angela, which I cannot post here. Perhaps she can email them to you. Read the brief article by Dr. Wolfe. Priceless.

      PS. NO it is C. diff. that is causing your symptoms and it is not a parasite; C. diff is simply an opportunistic bacteria–nonetheless dangerous–usually resulting from overuse of drugs.

      So it important you dont keep taking the wrong drugs.

      I wish you good luck and good bye.

      1. Hi Nathan, I cannot upload another’s work without theirs or the publishers permission, it is against copyright laws.
        Thanks for your efforts in commenting on the blog so far, and I would recommend you to now start your own blog on the topic so that you can share your experience with everyone there. I can mention you in this post if you like?
        The articles Nathan refer to include:
        Martin S. Wolfe, MD Chronic Diarrhea in Travelers: Postinfectious Irritable Bowel, Malabsorption, or Parasites?
        Current Infectious Disease Reports 2006, 8:255–257 I found this online, looks like you can read it for free but pay for download (there may be other sites):
        http://link.springer.com/article/10.1007/s11908-006-0067-8#page-2

        Principles and Practices of Infectious diseases, Seventh Ed. Mandell, Douglas and Bennett (authors)

    3. Hi Katie,

      One herbal treatment I would like to recommend you from our personal experience is Vita Klenz. Small kids can go with Vita Klenz for Kids (crushed tablet and injected into mouth with syringe). Older kids or adults can go for adult capsules.
      Contact them for more details: http://vitaklenz.com.au/
      Herbal treatment is especially important after antibiotics, as most of good bacteria is killed is well and the gut can be infected again.

  39. Katie, Once again, I would not trust the CDD. There are innumerable people like me who were not helped by the CDD drugs. They are using old drugs, and wrong dosage, and they will not cure your infection. That is, if you have D. fragilis/Eh. (And If you have something like Ascaris or Trichuria, they surely will not work because they are not protozoa.) I did the CDD protocols because Jackie at the badbugs promised that they would help. They DID NOT. I feel completely mislead. All you would do is damage your system. Also I would not trust their percentages of so-called cure. I know at least 10 people who called and complained to the CDD about triple therapy failues, but still they still keep giving people the same percentage numbers. There are numerous other posts by people on curezone who tried these drugs in complete vain. I just dont want you to be one of the statistics.

    Once again, my advice is for you to try Tinidazole and Paromo.

    On another note:

    And also, I would stay away from eating anything RAW; if you cannot wash, peel, and cook it, you dont eat it. I believe that produce that comes from many places (notably from the third world) is contaminated with feces/bugs, and in the US salads and berries were a big problem. We had a massive outbreak of parasites (cyclospora) in 7 states in the US, in salad bags imported from Mexico a few months ago . All contaminated with feces. http://www.cdc.gov/parasites/cyclosporiasis/outbreaks/investigation-2013.html

    The new age diet of raw food is not as safe as people think. COOK IT.

  40. Paul, whatever you do, do not take Metronidazole. One of the worst drugs with worst side effects. If you think you are bad now, wait till you try that. Tinidazole is a far superior drug, with far less side effects. and you only take it only once a day. 2000-2500mg. Look this up. I call that the wonder drug. It relieved all my pain within foru days of taking it, including left arm pain.

    I am sorry to learn that the CDD drugs did not work for you either. No surprise there. I believe CDD never listen to people’s complaints, and stick to their own narrative!
    Once again, of course we dont know what you have. But if you got it in Brazil, it is more often than not Eh. So I would try Tinidazole and Paromo. If not better, I would do Albendazole for 5 days. I dont know if you have that in Australia. Mebendazole is NOT the same thing.

    I can assure you one thing. There is not “alien” bug that one cannot kill.

  41. To Paul (I could not directly reply to your message, as there was no reply….)

    If you have taken Albendazole (if it is the right thing and NOT mebendazole or some other substitute) you can rule out certain kinds of helminths. (I hope you did not buy these drugs on line? They are simply junk.) Also, I hear Albendazole is not available in Australia?

    Also, Ivermectin, if you took the right dosage, should have ruled out Strongylodies. Either way, your symptoms point to Eh. which is more common than helminths. Praziquantel would have cleared up any liver flukes.

    No, I strongly advise against Secnidazole. I cannot emphasize this enough. Secnidazole will not work. It is an older drug, and a version of metronidazole. It will not kill what is in the tissues. One must first kill tissue eh, because otherwise, eh will come back, as Paromo kills only what is in the bowel.

    Tinidazole is a far superior drug, and it works far far far…. better because it is made to be take in high dose (2000mg-2500mg) so it can kill the tissue Eh. I am not making up these facts, and have learnt them the hard way; from research and from the best of the doctors who know they are properly administered. Tinidazole has a very long half life. (read http://www.drugs.com/mtm/tinidazole.html; one of the best websites on this and other drugs.)

    Sadly, I see many forums like these mistakes about drugs as they are misinformed. And they simply assume that have Blasto or D. fragilis,, and become single minded, not suspecting other parasites. As a result, they continue to suffer.

    This time you must do it right, because these are not drugs you want to keep retaking, as they are so taxing and toxic on the whole system.

  42. To all those who are about to take drugs:

    I see that on many forums people assume that when they take drugs, they should be in some special diet, without carbs, sugar, etc. They assume parasites feed on them!

    THis is simply NOT true, and it is quite dangerous. This is just badly misleading information. Once again, I too learned this the hard way.

    You MUST take these drugs on a full stomach. OTHERWISE the drugs will not work. This pertains not only to Albendazole (which must be taken with FATTY FOOD specially), but also Tinidazole and Paromo. OTherwsie they are not absorbed well, and cannot do the work they are supposed to do.

    If you think you can eat some veggie diet, and crackers while you are on these drugs, you will get really sick, and will not be able to tolerate them.

    Simply put, eat as much as you can, all well cooked soft food and take the drugs.

    1. Nathan, the people on here who refer to foods do so because they have found it assists them while they are infected to feel some relief. There is no suggestion it will cure them in anyway. No one has claimed to be eating veggies and crackers alone.

  43. Angela, I dont need to start my own website, and there are plenty of of them, including yours. I just wanted to post here to correct some misleading information. I see many here not knowing the basics about drugs and how to take them even. This is not the fault of the patients but the of the doctors! There is of course plenty of literature on how to treat which parasite, with which drug, and with what dosage.

    The very fact the that vast majority of the people on this forum dont even know why Paromo, for example, should never taken on its own, but must be taken AFTER a tissue drugs, indicates the sad state of our medical field. Anyway, I said my two cents. Good luck to everyone here.

    I just hope you do your research well, find out what you have, and take the proper drugs, according to the right dosage, so that you dont hurt yourself. Dr. Wolfe’s paper, which is freely available, is a good beginning.

    http://link.springer.com/article/10.1007/s11908-006-0067-8#page-2

    1. Hello Nathan.

      Your information is very interesting and makes a lot of sense re testing and treatment. I have just been to CDD who are wanting to do a Colonic infusion of antibiotics for Dientameobe but we have not been able to confirm it again after testing positive in October. I have done 5 tests since showing all manner of results from totally negative to positive to some bacteria etc.

      I have been incredibly ill with what I thought was CFS and bed bound for 5 years following a trip to Thailand in 2009. I have heard many good stories about CDD but also had some specialists down here in Melbourne question their methods and their non-specific antibiotic treatment. My own experience suggests testing is unreliable and I am not sure where to turn now.

      If you could contact me via email that would be great. I am interested in further easing from the CDC as I do not want to ruin my system totally with many courses of antibiotics / Fecal Matter Transplant without some guiding direction.

      Thank you so much for the time.

      Tim

  44. hello, I just got back a positive test for this parasite…I have had four years of problems and only when I went to an integrative doctor recently did she suggest parasites. I had gone off wheat was had made a difference with foul wind but have had constipation constantly for the last four years, chronic poor health, fatigue…you name it, We suspect my 6 year old daughter may also have it so she is being tested next. I start treatment this weekend…it is just a relief to have someone listen to me…GPs had just told me i needed more fibre!

    1. Hi Pippa, what a relief for you! Unfortunately this is a common story – diagnosis takes so long but good for your for pursuing it. Where abouts is your functional doc located? What country/ region? Keep us posted. Angela

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