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Could this be a parasite? (warning: long post)

Discussion in 'Gastrointestinal and Urinary' started by Art Vandelay, Dec 18, 2016.

  1. Art Vandelay

    Art Vandelay Senior Member

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    After reading this thread and in light of recent exacerbation of some of my gastro symptoms, I started thinking a lot more about my experiences over my years with ME/CFS and started to try to link up my gut symptoms to see if there's a pattern. I wonder if anyone can offer some thoughts.

    About 1-2 years prior to coming down with ME/CFS, I went on a trip to Sydney with my then-girlfriend. After we got back, we both came down with a gastro infection. Symptoms included: nausea, greenish watery diarrhoea, abdominal cramps, tiredness, greasy taste in mouth.

    As far as stomach bugs go, it was fairly mild and the worst passed within 2-3 days. However we both experienced what appeared to be a recurrence of the same symptoms some months later. We both had further similar gastro issues at times later over the next 12 months at least. Around 9-12 months later, I also started to experience urinary incontinence (I'm not sure if this is related).

    When I caught EBV, I experienced a lot of gastrointestinal symptoms. I would swing from diarrhoea to constipation and I vividly remember all sorts of pains through my abdomen from prolonged burning sensations to sharp, stabbing pains. In my first year of ME/CFS that followed, I had a lot of nausea and diarrhoea (much of which seemed to be provoked by eating carbs and by vitamin C IVs).

    One odd, occasional symptom really stood out: over the course of a day, I would have a number of bowel movements until finally I would simply pass nothing but a foul-smelling, clear jelly-like mucous (it would sometimes be green-tinged).

    Eventually a GP diagnosed insulin resistance and a giardia infection. He didn't run any tests for giardia however (because he claimed they were inaccurate), instead giving me a course of Flagyl. The antibiotic did help a bit but, as I still experiencing symptoms, I took a single dose of tinidazole which also helped a little.

    I improved quite substantially due to the low carb diet prescribed for insulin resistance and I quickly found that eating carbs significantly worsened my gut symptoms. But I was still getting pebbly yellow and green coloured stools, blood, mucous, bouts of diarrhoea, nausea etc.

    Another GP tested me for parasites and a blastocystis hominis infection was found. After trying some herbal remedies, I tried a combination of tinidazole and bactrim. After a few days of these antibiotics, my stools turned bright green for 1-2 days. After which, I instantly felt fantastic for the first time in years. My gut felt normal and I began to work full-time and enjoy life again thinking that I'd finally beaten CFS.

    Unfortunately my symptoms returned slowly after about 3 weeks of remission. Tests showed blasto again so I tried the same antibiotic combination with no result.

    Consequently, I saw a gastroenterologist (Dr Borody) in Sydney. I had an endoscopy and colonoscopy which only found some general, mild inflammation and the blasto infection. After two courses of his triple antibiotic protocol, the blasto no longer showed up in tests. My gut was improved but not completely better.

    Over the years that I've been on the Marshall Protocol, my gut has improved further and I'm more tolerant of carbs. However I still get green-tinged stools, a sour taste in my mouth and IBS symptoms. Also I still experience the odd phenomenon of having a number of (relatively normal) bowel movements throughout the day followed by passing nothing but mucous or a foul-smelling watery stool. I often feel much better (ie, less PEM) for 1-2 weeks after this happens.

    In the last few months, I've had an increase in the frequency and intensity of the above symptoms. In particular, abdominal cramps and pains in the lower right quadrant (an ultrasound ruled out acute appendicitis), bloating and an urge to defecate until I end up passing mucous or a watery substance.

    I'm wondering if these symptoms throughout my 18-odd years with CFS could be due to one particular parasite? Initially I thought cryptosporidium fitted the symptoms and coincidentally it was present in Sydney drinking water around the time I visited. Crypto has been shown to linger in those with impaired immune systems and can spread through the body. However, looking through my records, I find that I have been tested for it a number of times and all were negative.

    The only recent positive test for parasites I've had is for Dientamoeba fragilis. Given that I was tested extensively for it by Dr Borody many years ago and was always negative, I assumed that the d. fragilis was a new infection. It is thought that d. fragilis does not cause problems in many people and given that my gut symptoms had definitely not changed in the time in which I may have acquired it, I had figured that it wasn't worth treating at this stage.

    Has anyone experienced similar odd symptoms in their years with ME/CFS? Are there any tests you would recommend? Should I consider the idea that d. fragilis may have been the problem all along?

    Thank you everyone in advance for your thoughts. I am quite brain-fogged so I may not be able to reply or engage with you all but rest assured I am grateful for any input.
     
    Last edited: Dec 18, 2016
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  2. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    I've not had any parasitic infections, but I've looked at a lot of stools in my lifetime (former medical technologist), not that that matters any.

    Parasites can often be missed in stool exams due to their cyclical nature. Even if they were extensively tested for in the past, they may have been missed. See if the following help you:
    http://emedicine.medscape.com/article/997239-overview
    http://emedicine.medscape.com/article/997239-workup#c6
     
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  3. Art Vandelay

    Art Vandelay Senior Member

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    Thank you very much for the info @CFS_for_19_years . That's a very good point about parasites being missed in tests. Dr Borody was very critical of the standard of Australian testing for parasites and had made arrangements with a nearby lab for testing his patients. If I recall correctly, samples were taken on 3 consecutive days and were preserved in a fixative solution. I will discuss further testing with my GP in case something has been missed.
     
  4. Kina

    Kina

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  5. Art Vandelay

    Art Vandelay Senior Member

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    Thank you, @Kina that's sobering reading! As far as I know, I don't have giardia (in spite of the initial theory from my first GP). Giardia and cryptosporidium were both present in Sydney's water supply at around the time I visited so I have been tested for it by a number of different methods (including EIA which is supposedly more accurate) over the years. My most recent test was negative so fingers crossed that it's not giardia. However I will ask for further comprehensive testing when I see my GP next week.
     
  6. Kina

    Kina

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    @Art Vandelay

    Even before you mentioned Giardiasis, your description led me to think it was. My brother and sister-in-law got giardiasis in India -- their symptoms matched your description to a tee. If I were, I would pursue it until you have gotten answers and symptom relief.
     
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  7. Art Vandelay

    Art Vandelay Senior Member

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    Wow! That's very interesting @Kina . I will definitely follow up with my GP (looks like a giardia EIA over 3 consecutive days is the way to go).

    I had also assumed that if I'd had giardia that the antibiotics I've had over the years are considered to be very effective against it (one course of flagyl, 3 courses of Tinidazole, 2 courses involving Nitazoxanide).
     
  8. CCC

    CCC Senior Member

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    Dientamoeba fragilis is the infection we believe triggered my son's CFS.

    My advice is: get it treated.

    It took three goes with Barody's outfit (the third being that ever-so-dignified irrigation with a triple antibiotic). My son's gut stuff has settled down, and now we're working our way through other things (Bartonella).

    In case you are interested, the best thing for tummy pain has been nettle leaf tea. The tummy cramps and IBS were the worst for him.

    And if you don't want to do antibiotics again, then you could try this lady's approach: http://www.natureglow.com.au/2013/0...ites-my-experience-with-dientamoeba-fragilis/.

    In our experience, crypto gives yellower stools and more severe gut pain than dientamoeba. But we haven't had the same person infected with both, or even different people at the same time.

    As for catching things in Sydney ... Entamoeba coli gave the same symptoms you describe (and it forms cysts). Sounds much more likely than giardia to me (which is really stinky in a special way), but we've never had the 'chronic' form of either.
     
  9. Art Vandelay

    Art Vandelay Senior Member

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    @CCC thank you, that was very informative. It looks like I have a lot of information to take to my doctor!

    Where was the Entamoeba coli test performed? Was it through the lab that Borody uses or can you get it done at any pathology lab?
     
  10. CCC

    CCC Senior Member

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    That bad bugs website has lots of links to peer reviewed papers, too, if you want to give your doctor some reading. It also talks about how carbs feed the bugs - something you seemed to have noticed too.

    The Ent. coli was picked up at 'any old lab' as part of a routine stool test, with no fixative. We didn't need to ask for it. In the end, though, I'd say it was responsible for a short-term thing, but it seems to have resolved. Maybe the aggressive dientamoeba treatment ( few months later) killed off the Ents.

    You can get a PCR test for dientamoeba at 'any old lab', too, but the dr must write Dientamoeba fragilis on the request form or they will not test for it (costs). We've used the PCR test as follow-up and it's worked well for us.

    Also, don't get conned into one round of doxy for the dientamoeba. It was enough to clear my asymptomatic husband, but all it did was breed resistance in my son's case. If you can afford it, maybe ask for a referral back to Borody's mob?
     
  11. Art Vandelay

    Art Vandelay Senior Member

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    Thanks @CCC prior to seeing Dr Borody, I emailed Jackie from Bad Bugs a lot about my situation and she was very helpful. Luckily my current GP is open-minded and more than happy to run the tests that I suggest without much convincing.

    I've attached a copy of my last test result. This lab seems to test for both blasto and d.fragilis without specifically having to ask for it. From memory, my doctor just wrote "parasites" on the lab request form. It was done via nucleic acid testing from the looks of it.
    20161220_154942.jpg
     
  12. CCC

    CCC Senior Member

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    You're very lucky. Or maybe SA Pathology has the common sense to not remove tests from their list.

    I'm not at home to have the link on hand, but the Australian pathologists' professional organisation (RCPA) put out a formal position earlier this year or late last year to advise specificaly against measuring for dientamoeba. I can't find it on their website now, but the download is at home.
     
  13. collie

    collie

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    I know this is an older thread but very interesting, I have recently been diagnosed with Dientamoeba fragilis and Entoamoeba harmanni.

    When my symptoms started 4 years ago it was very similar to the OP. A tummy bug did the rounds of my house I caught it and had chronic diarrhea, pain in my right flank, lower back pain, chills, small amount of blood in stools etc. Also if I ate carbs late at night I would be doubled in pain the next day. Had several colonoscopies, gastroscopies, ct scans etc showed some mild inflammation that was it, was diagnosed with SIBO about 6 months later. Fast forward a year and came down with ME/CFS.

    My naturopath recently ordered a CDSA which showed up d.fragilis and E.harmanni. He started me on artemisinin for the parasites and after a few weeks I had the most normal bowel movements I have had in three years felt amazing was waking up feeling refreshed in the morning, libido went through the roof ;) lasted about three weeks and then back to normal feeling crap, diarrhea, tummy pain and all the usual aches and pains of my ME/CFS. Wondering if I should look back into this.
     
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  14. Art Vandelay

    Art Vandelay Senior Member

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    Hi @collie how are your gut problems these days? Have you decided to treat for parasites?
     
  15. Art Vandelay

    Art Vandelay Senior Member

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    UPDATE:

    After another positive test for d.fragilis, I've started re-examining the case that this parasite might be partly responsible for my ME/CFS.

    As mentioned in my first post, I had initially dismissed the idea that I've had d.fragilis all along because I hadn't tested positive for it while being seen at the CDD in 2003. However, I am wondering if these negative results are due to the type of testing that was available at the time? My records indicate that the testing at the CDD in 2003 was performed via microscopy whereas my recent positive tests were done via PCR. (Interestingly perhaps, culture tests were also performed as a part of my latest tests and were negative.)

    While information about the symptoms of d.fragilis is fairly scant, some resources I've come across seem to suggest that they match my symptoms; particularly the greenish, sticky stools, an urgent need to defecate and mucous. For example: http://emedicine.medscape.com/article/997239-clinical

    If I've had d.fragilis all this time, I wonder if some of the treatments I used for blasto should have eliminated the d.fragilis. These are:
    1. bactrim and fasigyn for 10 days (which gave me my greatest improvement for about 3-4 weeks);
    2. secnidazole and furazolidone for 5 days; and then
    3. secnidazole, furazolidone and nitazoxanide for 10 days (which finally got rid of the blasto).
    I'm wondering whether any of these combos should have been effective for d.fragilis also? Or does d.fragils require different treatment? (I've emailed Jackie at Bad Bugs to see if she knows what the CDD are currently using for d.fragilis.)

    I'm still a bit unsure about treating the d.fragilis because I likely also have a borrelia infection and most antibiotics cause me to have uncontrollable Herxheimer reactions.
     
  16. Art Vandelay

    Art Vandelay Senior Member

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    @CCC I thought you might be interested to see this document from Clinpath (a pathology lab here that is part of the Sonic Healthcare chain) about their updated parasite testing. They are still doing tests for d.fragilis and blasto and looks like they will be expanding the range of pathogens tested (see attached).

    And this is my latest result: 20170611_164035.jpg
     

    Attached Files:

    Last edited: Jun 11, 2017
  17. collie

    collie

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    Hi Art,

    Went a different route and saw KDM in belgium in April, back there on the 4th of July for my follow up. So far results have shown up Borrelia, Yersinia & Chlamydia Pneumonia, dysbiotic gut bacteria, elevated zonulin & Siga. Completely forgot to mention the parasites during my consult but will bring my results with me for my follow up and discuss with him. Have been on two antibiotics now for four weeks and definitely showing small improvements, also taking probiotic 3 times a day. Will let you know what he says about the D fragilis and if he will treat it when I get back.

    thanks
    colm.
     
  18. Art Vandelay

    Art Vandelay Senior Member

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    Hi @collie I'm glad to hear that KDM has found some answers for you and that the antibiotics have helped you so far.

    I wish you all the best with your treatment with KDM and I'll be interested to hear about your progress.
     
  19. CCC

    CCC Senior Member

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    Your doctor now has to explicitly ask for the testing. The pathology lab won't look for it otherwise.
     
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  20. Art Vandelay

    Art Vandelay Senior Member

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    Sorry to trouble you @CCC I see that the CDD recommends a combination of secnidazole and doxycycline for d.fragilis. However, re my post above, I've already had:
    1. secnidazole and furazolidone for 5 days; and then
    2. secnidazole, furazolidone and nitazoxanide for 10 days (which finally got rid of the blasto).
    for blasto in 2003. I wonder if the secnidazole and doxycycline combo would be effective if I've had d.fragilis all this time. Do you happen to know what the CDD's next line of treatment is?

    (I've also emailed badbugs but haven't heard back yet.)
     

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