1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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Poo transplant/ parasites/ gut bugs

Discussion in 'General ME/CFS Discussion' started by martinyzeany, Mar 19, 2013.

  1. martinyzeany

    martinyzeany

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    18 months after suddenly becoming bed ridden with "CFS" with minor IBS and visiting numerous doctors who couldn't help I went to an amazing Dr. at the Center for Digestive Diseases in Sydney Australia. He diagnosed me with having an unusual gut parasite called D.fragilis. Not only is this bug hard to test for but until recently it wasn't thought to be parasitic, however after getting treated for it I started to come back to life. After treatment I didn't make a full recovery as my gut flora had become badly damaged so I recently underwent a fecal transplant and it has been amazing. Nearly all my gut symptoms are gone and my energy is slowly coming back. So for anyone who is suffering CFS with gut symptoms I would recommend checking out the http://www.cdd.com.au/ website and maybe even making an appointment (international clients can do a phone consult.) The Center for Digestive Diseases is a research and treatment center and the physicians there are about the best in the world. If you have CFS and IBS, even minors IBS symptoms you could have an undiagnosed gut bug (bacterial, parasite, viral or fungal) which has not been picked up by previous testing and even if you don't you may have a gut flora imbalance which can also cause CFS symptoms. So please everyone DON'T UNDERESTIMATE THE GUT! Hope this helps someone find a cure.
    Allyson, Hip, Wayne and 4 others like this.
  2. Shellbell

    Shellbell Senior Member

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    Thank you for sharing this martinyzeany! I am having a horrible time resolving issues with my gut, which I believe is the root of my problem. I am extremely sensitive to anything I take to help with this issue. My "CFS" came on after a antibiotic adverse reaction. I had 5 rounds of antibiotics in a time period of a few months. I have been sick now for 6 years. I am currently being treated for h pylori and having a hard time handling the treatment. I see me having to do something like this at some point in hopes that I can repair damage that has been done. It's getting the pathogen load down first that is the problem I have to deal with before hand. I am really glad to hear you are recovering. Thanks again for posting!
    Wayne and merylg like this.
  3. sianrecovery

    sianrecovery Senior Member

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    Manchester UK
    Thanks for posting this - I am just deciding what to do about my blastocytosis, and was wondering how to contact these people xxxx
    merylg likes this.
  4. martinyzeany

    martinyzeany

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    After getting my guy bug I became sensitive to everything I could hardly eat more than cabbage, meat and rice for 2 years. These parasites make you sensitive. Often when you are treated with antibiotics it upsets your gut flora and bugs you may have had for a long time which were not harmful become opportunistic pathogens. It sounds like you could also possibly have a bacteria called clostridium difficile.
  5. martinyzeany

    martinyzeany

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    These guys specialize in treating b. hominis. If you can get to the center they do a colonoscopy treatment which has a approx 90% success rate but if you can't get there they can give you an oral treatment plan which is approx 80% effective. There is information of the web page on how to contact them. Good luck!
    sianrecovery likes this.
  6. sianrecovery

    sianrecovery Senior Member

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    Manchester UK
    Thanks Martin. I'm in the UK, so I guess I'm looking at oral treatment. It says they will only talk to a doctor, but I think I have one that will work with them. Do you know if they do their colonoscopy treatments as washes or implants?
  7. Tracy54a

    Tracy54a

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    Hi martinyzeany - would you consider writing about your success story? I too have been a patient at the CDD and am collecting fecal transplant success stories on my blog The Power of Poo to inform and inspire others. If you are interested I will send you a list of questions. Please let me know.
  8. Tracy54a

    Tracy54a

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    Wayne likes this.
  9. Hip

    Hip Senior Member

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    Very interesting, Martinyzeany.

    Can I ask: after your treatments for Dientamoeba fragilis, you say you didn't make a full recovery. But roughly how much recovery did you make just by the Dientamoeba fragilis treatment alone (that is, before you were treated with a fecal transplant)?

    And after the Dientamoeba fragilis treatment, how long was it (how many months) before you then got the fecal transplant?

    I am just trying to get an idea of how much the Dientamoeba fragilis treatment helped your ME/CFS symptoms, and how much the fecal transplant helped your ME/CFS symptoms. I know it must be difficult to gauge for you, because I presume you had both treatments relatively close together.


    Which drugs did you take to kill off your Dientamoeba fragilis gut infection, by the way?

    I have both IBS and ME/CFS myself, and so a while ago I took the triple drug cocktail for Blastocystis hominis (a similar gut parasite to Dientamoeba fragilis). This the triple drug cocktail comprised the drugs: secnidazole, diloxinide furoate, and Septrin DS, and was recommended by the Badbugs website.

    I had some mild improvements in my IBS symptoms after this triple drug cocktail, but nothing spectacular, and my ME/CFS did not really improve.
  10. Allyson

    Allyson *****

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    Australia, Melbourne
    i found my IBS symptoms all clear up if i follow a low FODMAPS diet and manage the lactose by abstaining or taking lactase any time i take lactose.




    A

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