Thursday, October 21, 2010

Unhappy Tummy

If you have read my recent previous posts you’d know that I have been having some real gut problems over the last couple of months. This all came to a head a week ago. I had my regular appointment with my Dr and while I was there I had some kind of attack or something. I suddenly felt like I was going to faint, pins and needles, sweating etc … it was yucky. My blood pressure was fine and so was my blood sugar, so don’t really know what exactly happened. My Dr did order some more gut related tests for me though. When I got home I felt totally drained and nauseous and went to bed. That was a week ago and I have been virtually bed ridden since, I didn’t even manage a shower until today.

The tests I had were for Helicobacter, pancreatic function and parasites. When the test results came back I was positive for all of them. The inflamed pancreas was no surprise because this has been a chronic issue for me for the last 3 years. I have seen several gastroenterologists and had scans, xrays, colonoscopy, endoscopy and although the results always show an inflamed pancreas all the Dr’s are at a loss to explain why and they all have said go away for 6 months and see if it settles down. Clearly it hasn’t.

The parasite is Blastocystis. I had it once about 2 years ago before I had CFS and it made me feel like death even then so it must be having a big influence on my current level of functionality.

Helicobacter is something that I really knew nothing about other than that it was what causes stomach ulcers. Apparently it is known for causing extreme fatigue and muscle weakness in some people. It has also been linked to migraines, food intolerance and of lots of other chronic illnesses. So, I am extremely pleased that we discovered I had this. While I am not getting my hopes up it is possible that once I get rid of this I may improve significantly and maybe not have to spend 24hrs a day in my apartment. How exciting would that be!!!!

I have today started treatment for the Helicobacter, it’s a combination of antibiotics and acid lowering medication that you take for 7 days. Once this s sorted then I can treat the Blastocystis parasite. The pancreas issue I think I will just have to live with. I have noticed that it usually only gives me trouble when I have other gut stuff going on, I guess it gets irritated or something. So maybe it will just settle anyway once I clear up these other problems.

I still feel really really unwell, totally crashed, in fact I am sleeping around 20 hours a day!!! I know, unbelievable. Hopefully in a few weeks my gut will be happier and the rest of my body will perk up. Just the thought of that is really making me grin :P

If anyone else has had any experience with any of these things please leave me a comment and let me know your experience.


  1. Hi, I'm sorry you're having all these problems. That's a very attractive tummy by the way, is it yours?

    I was checked for helicobacter last year and was found negative. I get pain in my upper right quadrant and have had several scans for gall stones but nothing ever shows, i wonder if it's my pancreas. It makes sense, if you're constantly fighting infection and not absorbing nutrients properly that you are going to be fatigued. I really hope this treatment works out for you. I wouldn't be surprised if the episode you experienced in the Doc's was a good old fashioned panic attack! And then you crashed from the adrenaline surge. Happens to me sometimes. Good luck with it all x

  2. I've had some stomach issues over the years of CFS including c. Difficile which was terrible (treated with antibiotics). I was tested and positive for Blastocystis as well, however, I don't think trad. Docs think that one is significant or causes illness...I was working with an alternative Dr. at the time who treated me with herbs for the blastocyctis. I have no idea if it ever went away. The one thing that really helped my gut was going off wheat. I wonder if there's anything they can do for the swollen pancreas??'re already off sugar aren't you?
    Hang in there.

  3. This is really interesting for me because about 18 months before I was diagnosed I had to go on a business trip to Holland and whilst there I caught a ghastly stomach bug and a lot of the symptoms I have now read about (having Googled) were v similar. The symptoms persisted for about a month after I returned. Had tests/stool sample and apparently nothing showed up. My digestion/gut was even worse than usual for good while after. Wonder now if it was same and wonder too what happens is that parasite is untreated. I always had the suspicion that it was down to something I had eaten of the boat over there and having read info it does seem as if carried in water.

    REALLY hope the treatments help you to feel better. You can't feel much worse than you have of late :O(

  4. H. Pylori can cause gastritis which can make one feel pretty awful also (I have chronic gastritis).

    I think treating the parasites, and H. Pylori bacteria I bet you'll have a good jump in functioning.

    Are you able to eat and stuff?

    I stopped eating foods with gluten in it and that seems to have helped with a lot of the digestive issues although it did nothing to help with fatigue, etc...

    Gut stuff is the pits! It sounds like you have a really good doctor...

  5. Hey Lee Lee, God, you sound like you're having a horrible time of it. I used to sleep all the time like that at the beginning.

    It is GREAT to see that you are getting some answers. I very happy for you. Did they give you any indication of how long it will take to get rid of the buggers?

    Do you have pain from your pancreas? If so what's it like? as I have been getting a new pain in my side and I am wondering if it is my pancreas.

    I hope you have some good times coming soon.

    Rest well xx

    Treya : )

  6. Treya, the pancreas pain I get is just under the bottom of he rib cage and it feels like someone is squeezing something in there so hard that it might burst. It's not pleasant.
    The Blastocystis is something that a healthy persons body/immune system can get rid of on it's own, usually within a few weeks. If your immune system is not working properly is can stay there forever.
    I have been on the antibiotics for the helicobacter now for 4 days with 3 days to go. The pain has stopped, so I feel beter in that regard but I have had diarrhea evry single day and I feel weaker than I ever have. I am also needing to sleep most of the day still. I do think this is probably because of the Blastocystis so I am hoping that will all improve once I start the treatment for it. I tell you, this has been the hardest stretch so far for me and I have had many hours of crying etc, which is quite unlike me. Anyway, fingers crossed xx

  7. This sounds awful to endure, no wonder you are crying! It's the pits. It is good that you are getting some treatment - i am crossing everything that you see an improvement really soon.

  8. This sounds so awful. And I can't sympathise enough about the fatigue....I've had a few crying spells of my own when it just seems relentless. Thankfully, I've improved some since then and I really really hope you do too.

  9. G'day Lee. I'm also a gay blogger, in Sydney, 45 years old, and was also diagnosed with CFS earlier this year. I have also been battling with severe depression for four years. Just found your blog. Very much looking forward to reading more, and just wanted to say hi.

    Michael :-)
    Sydney, Australia

  10. G'day Michael, nice to meet you! Feel free to drop me an email sometime if you like :)

  11. Lee Lee - Wow! I am so sorry you are doing so poorly. I'm glad that you have some hope that when this is all said and done that you might be feeling better. I sure hope so. Your strength and determination to overcome are admirable.

    Hang in there. Thanks for letting us know what was going on. I was wondering about you!