How I Survived My Odyssey With a Urinary Tract Infection

Coupled with my primary progressive MS, I was barely able to speak or get up

Stephen De Marzo avatar

by Stephen De Marzo |

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Well, I survived! I would’ve never believed something so seemingly insignificant could cause such devastating and lasting effects on my health.

I’ve had urinary tract infections (UTIs) before, as they’re a complication of self-catheterization with multiple sclerosis (MS). But this was the mother of all UTIs. It started out like a sneak attack — subconscious, clandestine. I wasn’t feeling right and assumed I probably had a UTI. My symptoms were standard for a urinary infection: fatigue and weakness. I initially tried to ride it out myself using common over-the-counter medications.

In the second week, I went for lab work to confirm my suspicions. I wasn’t getting better, but the first call about the lab work said I didn’t have a UTI. Slight panic set in. If it wasn’t a UTI, what was it?

After several more days and follow-up phone calls to my doctor, I was advised that it was a UTI after all and that a prescription was waiting for me at the pharmacy. Good thing I was somewhat proactive; waiting much longer could’ve been disastrous. I was given Augmentin (amoxicillin and clavulanate potassium), which I took twice a day for seven days.

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Into week three, I found that my symptoms were getting worse. I had chills and lower back pains along with the fatigue and weakness. I was also irate and could barely focus on anything. I was spending a significant amount of time in bed trying to sleep it off.

Finally, as I was taking my last dose of Augmentin, I felt a little better and thought I was turning the corner. Perhaps the medication was working?

The day after completing my medication, on a Saturday, I went to the farm to do some final tasks and shut it down for the remainder of the year. I was home by 2 p.m. and immediately felt a relapse coming on. That night it all came back: chills, fatigue, pain, and weakness. I couldn’t get out of bed and slept through dinner and most of the night.

Sunday morning, I was unable to move. No church for me. My wife came home at noon and found me flushed, extremely weak, and barely able to speak. She called the doctor to see if I could get more Augmentin at the 24-hour pharmacy nearby, and he asked if I had a fever. She told him I was extremely flushed and warm.

The doctor told her that I had to go to the hospital immediately because he thought I might have a kidney infection. At this point, I was completely incapacitated and unable to get out of bed. My wife and daughter carried me to the car.

The hospital confirmed that I had a fever. I was also incoherent. I underwent tests and was given broad-spectrum antibiotics, fluids, and steroids by IV. The urine culture was sent out for testing, and it was a waiting game to define what bacteria it was.

Wednesday afternoon, we learned that the bacterium was ESBL-producing Klebsiella, for which the doctor prescribed the antibiotic Invanz (ertapenem) in a seven-day intravenous regimen. He told me that this specific strain of bacteria was very resistant to most antibiotics, and for 10 days I’d been taking the wrong medication. He reprimanded me for not being more diligent in understanding my symptoms, as I was moments away from sepsis. He advised me that this type of Klebsiella was highly contagious, so I had to be quarantined.

Say hello to another seven days in the hospital. I ended up having this UTI for 24 total days! Now for the recovery.

Oh, brother! The first night after coming home from the hospital, my wife and I reflected on how seriously ill I’d been.

She read a recent Multiple Sclerosis News Today article by Patricia Valerio titled “Infections Nearly 4 Times as Likely for Patients With Progressive MS.” It stated that a recent study had found that older age and male sex are associated with the significantly higher rate of infection-related hospitalizations among primary progressive MS (PPMS) patients, with infections affecting the respiratory system, urinary tract, and reproductive organs being the most commonly reported serious infections.

I’m happy to report that I’m getting better. However, this recovery hasn’t been like the others and will take much more time. I’m fortunate that I’ll improve, but words of caution for all of us with PPMS: UTIs can be quite serious and must be addressed as quickly as possible.


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.

Comments

Cliff Meyer avatar

Cliff Meyer

After reading your UTI story, I'll tell you mine. I too have MS (SPMS), diagnosed at 30, with first symptom at 14.
Now I am 80 yrs. old. I fell on my right elbow awhile back braking it. Had to have it repaired with metal plate. (I fall a-lot) Then I got the UTI that was off and on for 3 months. My 80 yr Dr. said I was fine. Went to a young Dr, on my side of town and he said, let's do a cat scan.
He found 3 golf ball size stones in my Bladder, He Lasered them out, problem solved.

Reply
Heather Cushing avatar

Heather Cushing

I’m so sorry you had such a frightening experience. Thank you for sharing your story with the hope of helping others.

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Josh avatar

Josh

I had a 6-month UTI that came and went, but never fully went away. Also complicated with intermittent catheterization.

I was never admitted and treated inpatient, but went to the ER a couple of times.

I had a resistant strain of E. Coli that simply didn't behave as expected. And I basically had to do all the research myself. It was finally tamed by being on an antibiotic for almost a month every day. Given enough time it was able to knock it out. Seven and ten day courses just weren't cutting it.

But it was causing my MS symptoms to flare on and off like a stoplight. Which made everything that much harder. If you fall while transferring to the toilet its very hard to empty your bladder on the floor.
Well, no, actually it's very easy, just very embarrassing.

My MS doctor (not my Urologist) did put me on daily methenamine hippurate which makes your urine more acidic and creates an inhospitable environment for UTI growth. I'd certainly recommend looking into it!

So, just another guy in a similar place with you. Hang in there! Thank you for writing this!

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Betty S. in Raleigh, NC avatar

Betty S. in Raleigh, NC

Stephen, echoing almost every word you've written. Wow...and how awful such Klebsiella infections are. Two full weeks in hospital for me, while pandemic was actively ranging.

My only symptoms were feeling 'Absolutely Terrible', not a good help to medical professionals. No pain, no UTI symptoms, no 'nothing' except feeling bad, bad, bad. From early Oct to Nov 1, 2020 I felt terrible, bad, etc.

When EMS got me to hospital, (I was declined at 1st one, my hospital of choice, due to its being filled with Covid-19 persons), immediate care and discovery that I had kidney stones (no pain, remember) and very severe sepsis. Doctors kept me from Nov 1st/2nd & on for 2 weeks to stabilize and eradicate the sepsis. Twas a long haul back to what's become normal for us MSers.
Good to hear you're making progress. And thank goodness for family members such as your wife & daughter knowing what to do! My older son is 'my barometer'. Take best care, Betty S

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Betty S. in Raleigh, NC avatar

Betty S. in Raleigh, NC

PS: I, too, have PPMS.

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Kristin Hardy avatar

Kristin Hardy

Let me get this straight, after misidentifying the bacterium in question and twice giving you the wrong antibiotic, the doctor reprimanded you?

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Stephen De Marzo avatar

Stephen De Marzo

lol, kinda. a different Doctor. All different doctors.

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