The Loneliness of the Long-distance UTI Patient

The Loneliness of the Long-distance UTI Patient
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When did I first become aware of the word “phage”? “Star Trek,” of course!

It was an episode about a disease that was destroying a race somewhere in the Delta Quadrant. (OK, possibly — even I fade out in the Nerdverse. But it definitely was in the “Voyager” series.)

It also was about a bacteriophage — the writers just got their lifted scientific argot wrong. A bacteriophage is literally an eater of bacteria. They tend to be the good guys of the microscopic world.

When did I realize those might be helpful to me? That I’m not too sure about. It was sometime in the last few years. When you get desperate enough, you research harder.

I’ve been increasingly plagued by urinary tract infections and have written about it incessantly here. Those of us with MS are especially prone to UTIs. At least it’s a change from writing about poo.

I know the current orthodoxy is to blame the internet — well, Facebook — for everything, but it’s an incredibly handy tool. It’s something I used to daydream about while in college, where in the 1970s we’d only get to borrow the books du jour (or du essay) for four hours!

It’s a pity that my knowledge of math only ever stretched to the philosophical. I also hated garages.

So, phages slipped into my consciousness. They’ve saved the lives of people on the verge of death, including one U.S. man who would’ve died but for his wife hitting the internet. She was far more academic and also far more desperate.

The U.S Centers for Disease Control and Prevention even had to give permission for the phages to be allowed into the country. Luckily for me, I live in the U.K., where there is no such hurdle.

I jumped at it!

Private medicine is damned expensive, which is a bit of a shock for a Brit. I’m still in recovery, what!

This is to say nothing of shipping a urine sample to Georgia. No, not the American one, rather the country that was part of the former Soviet Union. Indeed, it’s where Stalin came from, though if anyone reminded him of that, they were perfunctorily shot.

The phage therapy institute I turned to, located in the Georgian capital of Tbilisi, was the source of phages supplied to the U.S.S.R. during World War II. They were employed in 1942 during the Battle of Stalingrad, which saved many lives and legs. The Western Allies first employed their wonder-drug antibiotics during the D-Day invasion of Normandy in 1944.

I’m enjoying this — science and history. I may have to lie down for a bit.

The Phage Therapy Center found E. coli in my sample. Though a common enough beast, as variations exist in all of us, they set off hunting for the exact bacteriophage to counter it. Best not to ask where!

Phages on Stun! (Photo by John Connor)

Eventually, a liter of the stuff turned up. It’s very yeasty, very umami.

What phage will you be having with your dinner, sir? (Photo by John Connor)

It’s also fiddly to take, as I had to imbibe a bicarbonate of soda solution one hour beforehand.

The upshot? The UTIs were mostly snuffed out.

At the same time, doctors at my local hospital changed my antibiotic regimen — while I waited for a new urologist. But that, dear reader, is another story.

Hurrah for me, another column idea! This one will now slowly phage out …

***

Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to multiple sclerosis.

In the ‘80s, John created the first regular column about the burgeoning London stand-up scene. In 1990 he wrote a book about its effect on the Edinburgh Festival: “Comics: A Decade of Comedy at the Assembly Rooms.” That year he also devised and ran a live topical stand-up team show at The London Comedy Store, The Edge. (It was destroyed in 2020!) In 2009 John was diagnosed with RRMS, which cut short his main job as a TV casting director for “Black Books,” “My Family,” et al. Now, John writes “Fall Down Get Up Again,” an irreverent journey with MS, and also serves as MS News Today Forums co-moderator.
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In the ‘80s, John created the first regular column about the burgeoning London stand-up scene. In 1990 he wrote a book about its effect on the Edinburgh Festival: “Comics: A Decade of Comedy at the Assembly Rooms.” That year he also devised and ran a live topical stand-up team show at The London Comedy Store, The Edge. (It was destroyed in 2020!) In 2009 John was diagnosed with RRMS, which cut short his main job as a TV casting director for “Black Books,” “My Family,” et al. Now, John writes “Fall Down Get Up Again,” an irreverent journey with MS, and also serves as MS News Today Forums co-moderator.
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2 comments

  1. chris noellert says:

    I was a sufferer of UTI’s since my DMD is Tysabri and that is one of the side effects. I used to get a UTI about once every 3 months. After being scripted for a range of Antibiotics where the UTI would never completely be wiped out, it just keep reinfecting after only 2 months.

    It was finally demonstrated that the only Antibiotic that cleared it up was Amoxicillin. This treated it but didn’t act as a preventative measure.

    Then about a year ago a new supplement called D-Mannos 1000 mg pill take 2x daily by Alerna Kidney Heath. My Urologist suggested I try it and for 13 months I’ve been UTI free! Don’t know if it’s available in Canada but it’s worth checking in to.

  2. Alison Hibberd says:

    My name is Alison Hibberd. I’ve had MS for 42 years being diagnosed aged 19.
    Consequently have been plagued by UTI’s all my life.
    Now at the stage ,like John, where I am pretty much immune to most antibiotics .I too am aware of phages but have not been brave enough to order any yet ! I have been using 1000mg of vitamin C which seems to have been keeping e coli at bay for 18 months. Apparently,it only works for that bacteria for some people.
    After re starting SC again after bladder botox,I may have to start researching phages again.
    I’ll have to see how things go !

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