And the Biofilm Goes to …
The medical profession must be sick and tired of patients diagnosing themselves via the wonders of the internet. But as a patient who’s sick and tired, you eventually have to.
Medicine is full of orthodoxies that are incredibly hard to shake. When you find yourself at the edge of these orthodoxies, you just have to do something. OK, OK, you is me, or as I should really write, “I.”
But it’s not just patients who do this — pioneering doctors do, too.
In the 1980s, Barry Marshall, an obscure Australian doctor, worked out that ulcers were caused by infection, not stress. He couldn’t prove it with mice, experimenting on live humans was verboten, and his idea was scoffed at by mainstream gastroenterologists. In the end, he infected himself.
Later, he shared the 2005 Nobel Prize in physiology or medicine with the pathologist he had worked with.
I’ve been suffering from urinary tract infections (UTIs) since I had to start self-catheterizing some eight years ago.
I was in my early 50s and never had a catheter, so I had no idea what was going on. I was alone in the house, which wasn’t a biggie back then, as I could still walk. But I found myself shaking and unable to move from a lying position on the couch. Any infection turns one’s MS up to 11! My wife was in Wales, dealing with her terminally ill aunt, and my eldest son was at work.
An ambulance was duly dispatched, and my son had to leave work to come home to let them in. I was carted off to the hospital and put on an intravenous drip of antibiotics.
I quickly became scrupulous about hygiene, and antibacterial hand gel has been a constant in my life ever since. For a while, I also used medical gloves but had to give that up when my right hand became too useless to get them on.
By this stage, hygiene was no longer enough. I went through the disease-modifying therapy (DMT) Lemtrada (alemtuzumab), which destroyed my leukocytes so much that now I can’t have the infusion of my current DMT, Ocrevus (ocrelizumab).
A few years back, I also had every single medical test that my urologists could think of. I came back with a clean bill of health. A urologist with a camera in my bladder even commented on how clean it looked. He was also impressed by my self-catheterizing routine!
It made no difference. UTIs plagued me.
For years, I’ve also been on a daily dose of prophylactic antibiotics. Recently, I was prescribed Hiprex (methenamine), which you take when you are UTI-free. It also helps to prevent UTIs. It’s helped a bit, and I managed a glorious two months of peace toward the end of last year.
I first realized I was moving into uncharted territory when I started citing an article from The Guardian in 2017 based on the latest research showing that dip tests of urine were dubious. My local doctors had no idea what I was banging on about. I had to send it to them!
Now I have no evidence to prove it yet, but I have a strong hunch that I have a biofilm in my bladder. All the symptoms are there. I’ve had chronic UTIs for over a year. I’ve had myriad antibiotic courses. They work for a while. It’s not a single infection. When the coast, or rather the urinary weather, calms down, the collection of bugs have a chat (called quorum sensing), send off scouts, and off we go again.
So, I’ve decided to go off-book and try phage therapy. This is a story in itself, and handily gives me something to write about in my next column. There have been many documentaries about it recently in the U.K. I reckon there’s a book in it.
I just have to live long enough.
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