And the Biofilm Goes to …

And the Biofilm Goes to …
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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.

***

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 Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.

In 1982 John Connor was a stand up, sketch writer & journalist – ‘Crap at all three he decided whilst watching a man performing with a paper bag on his head that as nobody else was going to write about stand up he would’. ‘Comics: A Decade of Comedy at the Assembly Rooms’ by John Connor. Papermac 1990. In 2009 John Connor was diagnosed with MS. In 2020 John Connor stopped producing & directing his own devised live 30 year old resident topical comedy show at London’s Comedy Store – ‘The Edge’. Ironically destroyed by the biggest news story to hit the world since 1939! He was also a UK TV Casting Director specializing in comedy – including one of the hippest shows ‘Black Books’ [double BAFTA winning Situation Comedy Award] & for at least a decade the biggest sitcom on British TV ‘My Family’. TV & MS was a step too far – and we know how hard any step can be. Now he can’t even manage a step! John also writes “Fall Down Get Up Again” – an irreverent journey with MS for Multiple Sclerosis News Today. And is now the Co-Moderator of MSNT’s MS Forum.
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In 1982 John Connor was a stand up, sketch writer & journalist – ‘Crap at all three he decided whilst watching a man performing with a paper bag on his head that as nobody else was going to write about stand up he would’. ‘Comics: A Decade of Comedy at the Assembly Rooms’ by John Connor. Papermac 1990. In 2009 John Connor was diagnosed with MS. In 2020 John Connor stopped producing & directing his own devised live 30 year old resident topical comedy show at London’s Comedy Store – ‘The Edge’. Ironically destroyed by the biggest news story to hit the world since 1939! He was also a UK TV Casting Director specializing in comedy – including one of the hippest shows ‘Black Books’ [double BAFTA winning Situation Comedy Award] & for at least a decade the biggest sitcom on British TV ‘My Family’. TV & MS was a step too far – and we know how hard any step can be. Now he can’t even manage a step! John also writes “Fall Down Get Up Again” – an irreverent journey with MS for Multiple Sclerosis News Today. And is now the Co-Moderator of MSNT’s MS Forum.
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2 comments

    • John Connor says:

      Much like Alice falling dawn that rabbit hole things have become mightily confused.
      Myriad attackers, hence my self-diagnosed biofilm hypothesis might be right.
      In desperation did throw Phages at one of them and have felt better ever since!
      Still that might change.
      A future col when clarity or the White Rabbit appears!

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