Giardiasis link to ME/CFS? My Bolivian souvenir

Giardia Lamblia - the little protozoa who took up residence in my gut c1991

 In 1991 I relocated to Bolivia, South America. I lived and worked there for the next two years without returning to the UK until my first furlough in late 1992, after which I did not go back.


During my time there, I contracted giardiasis, and was treated in the Methodist Hospital in La Paz. American missionary doctors prescribed the standard drug to treat Giardia Lamblia, Metronidazole. 

After the short, sharp earlier stage of this intestinal disease, I found it all but impossible to return to normal functioning. I lost weight. I lost energy. I became weak. I lost my appetite. My limbs and muscles became sore and painful. I had severe headaches. I had trouble sleeping. I had a constant feeling of deep, draining fatigue. The sensation I call "walking uphill through treacle". My ears sang. My eyes found it hard to bear the light.

 This went on and on. I stayed for a prolonged period recuperating with another missionary couple in La Paz, in a spare room, away from the bustle of city life. I did not improve much, or quickly.

 In time, faced with an ultimatum from the church headquarters back home that unless I could return to my post in Sucre, a plane ride away, they would have no alternative for the sake of my own health (considering my diabetes, too, as I was unable to eat healthily by this point) but to bring me back to England, I made the excruciating journey back to Sucre.

Sucre, "La Ciudad Blanca", "The White City", where I was director of the Internado Metodista

I was little better there. Fortunately (or not!), several of the students in the Internado Metodista where I was director for the church, were studying medicine or nursing at the University of Chuquisaca in the city. There were no shortage of girls willing to try out their medical skills on this captive, weakened gringo!

I have photos of me lying in my bed at the Internado, wired up to a saline drip which was taped precariously to the wall while the med student inmates tried to help me recover and keep me hydrated. I felt like I was running a temperature much of the time, even though the climate in Sucre is pleasantly temperate, free from the extremes of La Paz and at a lower altitude.

La Paz, highest capital in the world, on the Andean Altiplano overlooked by Mount Illimani

 I did complete my time there, but my health has never fully returned. All the symptoms from that time, from the IBS-like swings into diarrhoea and constipation, to the worst ravages of profound disabling fatigue, muscle and nerve pain, cognitive dysfunction, sleep disruption, new sensitivities to pollen, alcohol and strawberries etc have dogged me on and off, by boom and bust ever since.

I don't recall the giardia protozoa having such a friendly face!

 I recovered for periods enough to count myself well, and I rejoice to remember those times when I was strong enough to travel around talking about my time in Bolivia, to train as a minister in the Methodist Church and work with churches in Southampton and latterly, Rotherham.


But things were never quite right. Three bouts of shingles in my head that left me unable to work for weeks that ran into months. Then the gradual worsening of symptoms each autumn when, on diabetic advice, I would obediently undergo the annual flu jab, meant to save me from rogue virus attack! Every time worse. Then that final collapse after the flu jab in 2005 that brought me to where I am now. Always the mystifying panoply of disabling symptoms that nobody could explain or alleviate.

I had read before in articles discussing M.E./CFS that giardia is one of the conditions implicated as a trigger.


Here today, we have this thorough study from Norway, that shows nearly half of Giardia patients report IBS and chronic fatigue symptoms three years later. Some even after 8 years.

Giardia - not my favourite parasite. Could it have triggered my M.E.?

I had to have a stool sample analysed on my return from South America in the early 90s to establish that the giardia lamblia was not nesting smugly in some coil of my ravaged colon, and I was eventually given the all clear. I was glad to hear those voracious troublesome little protozoa had taken leave of my gut.


I wonder if one day, I'll find the bunting and party-poppers actually came out too soon on that score?

Giardia - the guilty party?

 But if giardia is to blame, then I have hope that further studies may unlock a cure for me, and set me free at last.
  
Norwegian Study into Giardiasis link to IBS & Chronic Fatigue

Blood-y marvellous!

Just read an interesting post on another excellent blog here:


niceguidelines.blog


There is a new article which claims that 4.5% of those diagnosed with M.E./CFS have developed the disease after receiving a blood transfusion.


This adds to the debate surrounding the blood ban imposed on us in the past year in the UK.
Those of us officially diagnosed with M.E. can no longer give blood. Now this new study indicates that whatever organism/virus causes or triggers M.E. symptoms, may have its origins in the blood.


This doesn't take us much further down the route to a cure or treatment, sadly. 4.5% hardly sounds like a significant proportion.


I was one of those who have had many potential "trigger" events along the way i.e. shingles (herpes zoster virus), giardiasis, as well as several years of being severely crashed after the annual flu jab recommended for me as a Type 1 diabetic. The truth is out there. Somewhere. Medical science will one day hold the answers.


A little crashed at the mo after cutting a couple of twigs in the garden. The bushes have infinitely more energy than my immuno-compromised little body. Even with all my stubborn fightback impulses that refuse to be infinitely kept under by this darned disease!


Tomorrow is diabetic clinic. The moment of truth when I discover if I'm going to be taken to task for discontinuing my statins. Will my cholesterol be raised beyond reason without them? One diabetes specialist nurse and even the last diabetes consultant I saw 6 months ago suggested I try to come off them to see whether my M.E. muscle/nerve agonies and weakness improved without the statins notorious influence. Let's see which way the old swings and roundabouts go this time. Watch this shaky space!

Five years ago

Five years ago. Sometimes it seems longer. 

I was busy being me. Minding my own business. Glass half full or more often full to overflowing.

I was dressed for work. More than work, much more my whole life than a job. One of the churches under my care was expecting me to bounce in to lead an all-singing, all-dancing all-age worship service. The sort of lively, noisy service full of laughter, joy and thankfulness that many folk think doesn't happen. The sort where newcomers grin and say as they shake my hand: "I never knew church was like this!"

Five years ago. I put my briefcase down by the bed. I'd had flu for days but was pushing through as usual to do what I was called to do. I'd had the annual flu shot, as advised to diabetics in the "at risk" category, a week before. It often made me feel shockingly ill for weeks after, but I laughed and did as wisdom dictated, had the shot anyway.

Five years ago. I tested to make sure my blood sugar wasn't low and going "hypo". It felt a bit like it. Only at the same time so much worse. My body was shutting down. The world was slipping into feverish, rubbery slo-mo. The dog caught my eye, my male tricolour sheltie, with me since the beginning of my ministry nine years earlier. My knowing little dog, who would pant and laugh until you joined him, gently mocking him, then pop his black lips back together and look at you as if you were insane. My wise, brave little dog who knew me better than I knew myself, and still adored me.

"It's alright. I'm just going to lie down for five minutes. Just for a second." I said to him. Mostly to myself,  though, because I know he knew even then he would not see me well again in his lifetime.

The next thing I knew, the steward from the church was knocking at the unlocked front door of the Manse and calling my name up the stairs. I had blacked out and never turned up to take the service.

Five years ago. That wasn't the beginning of M.E. for me. That came most probably back in 1991 when I suffered with giardia (internal worms that love your liver!) and amoebic dysentery while living and working in Bolivia. That's when the boom and bust patterns of M.E. seem to have first taken hold, triggered by the virus and infection and trauma in the immune system. I had been in South America, having the time of my life giving all I'd got and being blessed with much more in return. The first English Methodist Mission Partner to live and work in Sucre, Bolivia. I would never be the same; but it was years before I could begin to trace what had changed in my body. My spirit had so been soaring!

Five years ago. After three severe bouts of shingles in my head, followed by months of pain and illness leaving me intermittently all but disabled, the biggest collapse. The one that changed my life and had me forced to retire from the ministry I love, temporarily at least, struggling some days to function at all.

Five years ago.

Life begins at forty. At forty three I was in my prime.