Art Vandelay
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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.
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.
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