Using cutting-edge technologies new to ME/CFS, Ian Lipkin and Mady Hornig took the deepest dive yet into the gut flora of ME/CFS patients and uncovered another potential subset – their third in a row.
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Keeping up with the latest research in ME/CFS, long COVID, fibromyalgia, and allied diseases. Exploring new treatment possibilities. Learning how others have recovered. All in as thoroughly and comprehensively as we can.
Please support Health Rising during our quickie summer donation drive. Our goal is to raise $15,000.
Giardia is a single cell protozoan which has many varieties which affect different animals, including cats and dogs. These varieties of parasite generally don’t crossover to different species so it is thought that we would not be affected by the same type that parasitizes cats or dogs. The type of giardia which affects us can be present in any of the streams and waterways of this country open to fecal contamination, so it is not recommended even to brush your teeth in water which has not been pre-treated, unless you drink directly from a spring. Many people don’t seem to get this parasite or are only mildly and temporarily affected, but others like me and probably you, can get very sick from it. What it does is damage the lining of the small intestine so it cannot do its work. Eating whole wheat will bring on acute pain. Not sure if it is the bran or gluten but it turns toxic in the absence of a good gut lining in the small intestine. I have wondered if a lot of low level giardia infection could be causing the gluten and wheat sensitivity?
I was sick from giardia three times in 5 years before I got ME/CFS. First time I was bedridden, nauseated, weak and could barely eat. The second two times I very quickly recognized the symptoms, which were unique to giardia, took the flagyll again and got immediately better.
And beyond the type of giardia present in this country, with world travel we can be exposed to bugs for which we have no immunity, bugs which most doctors here are ignorant about. I was badly sickened twice more by “foreign” bugs. These kinds of gut infections can be ferocious!
I’m sure that there is a missing link in these findings for people like me. I’ve had ME since 1984. I was almost completely bedridden for the first five years with severe muscle, neurological, gut and brain symptoms.
After five years of that I was so ill and in such severe, relentless pain that I felt I couldn’t survive much longer, though I was only in my mid-20s at the time. It was awful. I then saw a herbalist who suggested an anti candida diet to “change the gut flora”, which he suspected was very disordered. It was basically a fast for several days (pau d’arco tea only) followed by a diet of meat, fish, vegetables, herbs and vitamins, whilst cutting out most grains, fruit and dairy food for a time, and zero sugar of course. Within a month I was able to get out of bed and live life pretty much as normal again (I could even work part time), though whatever was at the root cause of the disease did not disappear, just all the worst symptoms.
The problem though is that such a strict diet is virtually impossible to stick to for life (I managed several years), so whatever is causing the gut flora to be so horribly altered needs to be fixed, whatever that may be. I’m not sure the altered bacteria is the cause of the illness, but rather an effect of an altered immune system. The illness that triggered my ME was sudden and severe – not something I’d experienced before or since – which I still feel the symptoms of from time to time, so I think something lingered from it, though I know this is not a popular theory.
Antibiotics given for other illnesses have also given temporary relief – my feeling is that they kill off the really poisonous bacteria causing symptoms which, if a suitable probiotic was used afterward, would keep me feeling well, but the commercially available ones don’t really seem to do the trick. And if taken without a clear out of the bad bacteria first they cause even worse symptoms.
High dose antivirals have also given me significant relief, but I could only take them for a year due to the high cost. The fibromyalgia type pain went away completely for several years after taking them (it’s since returned).
So it will be interesting to see the outcome of this research. Though I have to say that after 33 years I’ve almost given up on anything definitive being known about this illness in my lifetime. Almost… 🙂
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Using cutting-edge technologies new to ME/CFS, Ian Lipkin and Mady Hornig took the deepest dive yet into the gut flora of ME/CFS patients and uncovered another potential subset – their third in a row.
Health Rising’s Quickie Summer Donation Drive is On!
Giardia is a single cell protozoan which has many varieties which affect different animals, including cats and dogs. These varieties of parasite generally don’t crossover to different species so it is thought that we would not be affected by the same type that parasitizes cats or dogs. The type of giardia which affects us can be present in any of the streams and waterways of this country open to fecal contamination, so it is not recommended even to brush your teeth in water which has not been pre-treated, unless you drink directly from a spring. Many people don’t seem to get this parasite or are only mildly and temporarily affected, but others like me and probably you, can get very sick from it. What it does is damage the lining of the small intestine so it cannot do its work. Eating whole wheat will bring on acute pain. Not sure if it is the bran or gluten but it turns toxic in the absence of a good gut lining in the small intestine. I have wondered if a lot of low level giardia infection could be causing the gluten and wheat sensitivity?
I was sick from giardia three times in 5 years before I got ME/CFS. First time I was bedridden, nauseated, weak and could barely eat. The second two times I very quickly recognized the symptoms, which were unique to giardia, took the flagyll again and got immediately better.
And beyond the type of giardia present in this country, with world travel we can be exposed to bugs for which we have no immunity, bugs which most doctors here are ignorant about. I was badly sickened twice more by “foreign” bugs. These kinds of gut infections can be ferocious!
Thanks! I didn’t know it could damage the gut lining…There you go!
I’m sure that there is a missing link in these findings for people like me. I’ve had ME since 1984. I was almost completely bedridden for the first five years with severe muscle, neurological, gut and brain symptoms.
After five years of that I was so ill and in such severe, relentless pain that I felt I couldn’t survive much longer, though I was only in my mid-20s at the time. It was awful. I then saw a herbalist who suggested an anti candida diet to “change the gut flora”, which he suspected was very disordered. It was basically a fast for several days (pau d’arco tea only) followed by a diet of meat, fish, vegetables, herbs and vitamins, whilst cutting out most grains, fruit and dairy food for a time, and zero sugar of course. Within a month I was able to get out of bed and live life pretty much as normal again (I could even work part time), though whatever was at the root cause of the disease did not disappear, just all the worst symptoms.
The problem though is that such a strict diet is virtually impossible to stick to for life (I managed several years), so whatever is causing the gut flora to be so horribly altered needs to be fixed, whatever that may be. I’m not sure the altered bacteria is the cause of the illness, but rather an effect of an altered immune system. The illness that triggered my ME was sudden and severe – not something I’d experienced before or since – which I still feel the symptoms of from time to time, so I think something lingered from it, though I know this is not a popular theory.
Antibiotics given for other illnesses have also given temporary relief – my feeling is that they kill off the really poisonous bacteria causing symptoms which, if a suitable probiotic was used afterward, would keep me feeling well, but the commercially available ones don’t really seem to do the trick. And if taken without a clear out of the bad bacteria first they cause even worse symptoms.
High dose antivirals have also given me significant relief, but I could only take them for a year due to the high cost. The fibromyalgia type pain went away completely for several years after taking them (it’s since returned).
So it will be interesting to see the outcome of this research. Though I have to say that after 33 years I’ve almost given up on anything definitive being known about this illness in my lifetime. Almost… 🙂