Anyone had Sepsis?

Posted by ursala7 @ursala7, Apr 29 12:55pm

After a couple days of feeling poorly, with extra phlegm, fever, SOB and malaise, I went to urgent care. While there I became faint because my blood pressure dropped to 80/50.
They sent me straight to ER who found elevated lactate (sepsis marker), high WBC and metabolic stress, so I was admitted and treated for three days with sepsis protocol. I can't believe how fast this came on. Now I'm paranoid of a reoccurrence, which statistically happens to about a quarter of patients within 30 days of the initial incident.
Would appreciate comments from anyone who has experienced this.

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

Profile picture for ess77 - Elizabeth @ess77

@ursala7 and all.. Well, folks... 2025 was the year of sepsis for this lady. I'm 79 years, have multiple health issues all progressing of course. But, the one that's a shock to me are the multiple annual UTI's I have that require serious antibiotic treatment and often refuse to leave my body!

Last year, I was in the ER with 4 UTI's severe enough to require ER care. I had sepsis all 4 times. Once not horrid but requiring several IV antibiotic treatments. The others required days in hospital care with IV antibiotics.

In 2024, I had 3-4 UTI's, 2 with sepsis. 2023, 4 UTI's, a couple needing emergency care due to high protein levels and such, 1 with sepsis that was treated at first in Urgent Care facility. That was the first sepsis I had and a learning experience in all caps.

I have several auto-immune illnesses, have been treated since age 40, periodically through the years, with at times high Prednisone. Developed diabetes in 2019 due to steroid use. In 2025, had serious reactions to using Oxympic for diabetes control, which had it under excellent control until it didn't. I developed all side effects, was quite ill and taken off asap. Within a couple of months, I was in the ER with a coma glucose level, treated after admission for severe diabetes issues and began my new life-long insulin regimen... in May 2025.

Through out that year, I had 4 UTI with ER visits and sepsis. Recovery from the May even required step down treatment to a Hospital Rehab where I was suddenly paralyzed from the hips down for 4 days, unknown diagnosis to this day. I know what caused it, I believe, but the doctors are not writing down a diagnosis. I think the body was shocked severely by the high glucose event, which shocked my auto-immune system into multiple attack modes, which led to severe quite rare PMR attack on my hips and muscles leading to my muscles not responding to the nerves directing them to move, etc. That's my very crude, non-medical evaluation. The diagnosis is in there somewhere... leading back to the Oxympic attacking my body, especially my muscles.

After that rehab, I went for a month to NH rehab. It was unbelievable.

That scenario occurred a 2nd time later in the year, to a different NH on demand and still came home with loud, distinct instructions to medical and family, I will not live in a nursing home, period. Leading me to moving out of my condo, estate sale clearing out my belongings, renovating my condo for aging needs-walk-in large shower, small kitchen-ette in small bedroom upstairs, master bedroom set up for me so I can live upstairs safely alone for several days when needed.

The last sepsis event was frightening, exhausting, very debilitating. I am semi-bed=ridden now due to the extreme fatigue and weakness left from the sepsis. I worked diligently to stay infection free from October 2025 to late March 2026. Long time for me!! Great. I was under some stress and developed the first 2025 UTI, but got antibiotics quickly and better.

A second UTI began in mid-April. I am now on the 2nd 10 day round of antibiotics, followed beginning tomorrow with Septra ongoing. We are working hard to ward off sepsis!

This is a long discussion but since I've experienced sepsis as I have, it may be helpful to some.
It is much more serious than I ever thought. A friend recently died with sepsis after recovering from hip replacement, getting an infection and not recovering.

We must all be aware of this issue, as possibility with any infection, any age. Obviously. my many health issues, compromised immune system, multiple infections leaves me open to blood infections more easily. I doubt I will recover from another such infection, so am determined not to let anything get out of control.

There you go. I wish for you all you never experience sepsis. It is stunningly shocking to the system. Recovery is long, difficult and I'm not sure it's complete, don't know. In my case, it led to life changes.

Blessings to all on this crazy health journey. Elizabeth

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@ess77 You have really been challenged in the last few years - it's a graphic description of how our systems can start cascading if pushed into battle mode. I call my immune system the "slumbering giant". I've been reluctant to put too much into my body in case it wakes the giant. I had suffered with UTI's for years also, until I finally decided the risk was worth it (starting in 2020) to take Estradiol. Since then, that part is calmed down - don't know if you've tried that; it just happens to work for me, for the past six years.
Sounds like Septra will be a maintenance antibiotic - sure hope that works well.
I hope and pray for you that things calm down. We all deserve a break, right?

REPLY
Profile picture for ursala7 @ursala7

@ess77 You have really been challenged in the last few years - it's a graphic description of how our systems can start cascading if pushed into battle mode. I call my immune system the "slumbering giant". I've been reluctant to put too much into my body in case it wakes the giant. I had suffered with UTI's for years also, until I finally decided the risk was worth it (starting in 2020) to take Estradiol. Since then, that part is calmed down - don't know if you've tried that; it just happens to work for me, for the past six years.
Sounds like Septra will be a maintenance antibiotic - sure hope that works well.
I hope and pray for you that things calm down. We all deserve a break, right?

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@ursala7 and all... Yes, I too, had frequent UTIs in my young and middle life, but was shocked as the dickens to have such a recurrence in later years. I use Estradiol cream several times daily and think it is one definitive help fighting recurring UTIs, although never taken orally. A supplement I found that is like gold for me is D-Mannose. It works to slough off anything clinging to the side walls of the bladder that's foreign, like bacteria, and man does it work for me. I began taking a double dose daily last fall and no UTI until March 2026 and it was lighter. I take it religiously.

Thank you for your kind words and prayers. I do need them...
Blessings, Elizabeth

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Profile picture for rmoore901 @rmoore901

@ess77 Mayo also has a good discussion group for auto immune issues with discussions about UTI’s which you might find some helpful information about and what has been helping some users. Also with the lower limb paralysis have the run a myositis panel? All of which to be run by your treating physician of course. Take good care.

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@rmoore901 and all... Thank you, @moore901, for the good information. I enjoy the auto-immune site that is quite good, great information and tips and friends. I often learn on that site more about dealing with my several auto-immune illnesses and others as well.

I do not think a myositis panel was run. I consulted with Muscular Neurology, Physical Medicine, Orthopedics, led by my wonderful Rheumatologist. I'll check the records to see and if not, discuss with my Rheumatologist who was spear-heading the search. Thank you so much for that tip. Interesting...

Blessings to you. Elizabeth

REPLY
Profile picture for rmoore901 @rmoore901

@ess77 Mayo also has a good discussion group for auto immune issues with discussions about UTI’s which you might find some helpful information about and what has been helping some users. Also with the lower limb paralysis have the run a myositis panel? All of which to be run by your treating physician of course. Take good care.

Jump to this post

@rmoore901 and all... You may have never been told this, but, sir... You are an angel! I messaged my rheumatologist and in fact have an appointment with her next week. I, as is my custom since becoming my serious, only advocate and learning the advocate ropes, researched using Perplexity, NOT Google, to learn about myositis. This is a gold mine for me.

I suspect I have had Myositis for decades in a less active, less pervasive form. It may be an underlying cause of many issues and events I've experienced in the last several years especially. I researched the Cleveland Clinic and Mayo Clinic, my first 2 go-to's... and found information directly hitting my symptoms through many illnesses, most un-diagnosed, misdiagnosed, or put off on typically female diagnoses. These events fit smoothly into this diagnosis.

I recall being misdiagnosed with Myasthenia Gravis several years ago. In hospital, I was given 3 days of IVIG treatments. It was wonderful. I felt stronger, whole body stronger, It was amazing to me. I didn't think it would help, surely not as it did. That lasted several months, faded and I decided after this paralysis hit and now is full body on occasion, I will check if my rheumatologist thinks IVIG will help. I do. The muscle issue is worsening, consistently, and I don't see myself improving.

Interestingly, last year in the hospital and NH rehab facilities, the PT was excellent and helped significantly. Especially the recumbent stepper! On a limited basis. I tend to overdo throughout my life, so that is no exception, but learned quickly slightly too long on the recumbent stepper and I lost use of my legs. Could not pick up my feet. They were heavy. Glued to the floor!

I would love a recumbent stepper in my home, but obviously can not afford one. I am too weak and infection susceptible to go to the PT rehab or my 1st love, the warm therapy pool. That pool is total body and soul healing for me. Can't get to it...

So, thanks, again. You gave me a glimmer of hope... not for permanent healing, but for answers to many long questions. Putting a name on something bothersome is so helpful! I suppose I diagnosed it, sort of??? In my bumbling, non-medical patient way. This happens as we live longer with more health issues piling on if we advocate for ourselves. Research wisely. I do. So, Thank you many times over... Blessings, Elizabeth

REPLY
Profile picture for ess77 - Elizabeth @ess77

@rmoore901 and all... You may have never been told this, but, sir... You are an angel! I messaged my rheumatologist and in fact have an appointment with her next week. I, as is my custom since becoming my serious, only advocate and learning the advocate ropes, researched using Perplexity, NOT Google, to learn about myositis. This is a gold mine for me.

I suspect I have had Myositis for decades in a less active, less pervasive form. It may be an underlying cause of many issues and events I've experienced in the last several years especially. I researched the Cleveland Clinic and Mayo Clinic, my first 2 go-to's... and found information directly hitting my symptoms through many illnesses, most un-diagnosed, misdiagnosed, or put off on typically female diagnoses. These events fit smoothly into this diagnosis.

I recall being misdiagnosed with Myasthenia Gravis several years ago. In hospital, I was given 3 days of IVIG treatments. It was wonderful. I felt stronger, whole body stronger, It was amazing to me. I didn't think it would help, surely not as it did. That lasted several months, faded and I decided after this paralysis hit and now is full body on occasion, I will check if my rheumatologist thinks IVIG will help. I do. The muscle issue is worsening, consistently, and I don't see myself improving.

Interestingly, last year in the hospital and NH rehab facilities, the PT was excellent and helped significantly. Especially the recumbent stepper! On a limited basis. I tend to overdo throughout my life, so that is no exception, but learned quickly slightly too long on the recumbent stepper and I lost use of my legs. Could not pick up my feet. They were heavy. Glued to the floor!

I would love a recumbent stepper in my home, but obviously can not afford one. I am too weak and infection susceptible to go to the PT rehab or my 1st love, the warm therapy pool. That pool is total body and soul healing for me. Can't get to it...

So, thanks, again. You gave me a glimmer of hope... not for permanent healing, but for answers to many long questions. Putting a name on something bothersome is so helpful! I suppose I diagnosed it, sort of??? In my bumbling, non-medical patient way. This happens as we live longer with more health issues piling on if we advocate for ourselves. Research wisely. I do. So, Thank you many times over... Blessings, Elizabeth

Jump to this post

@ess77 thank you so much for your kind words. This group has helped so much. We are all in this together and sharing our collective experiences can be so helpful in advocating for ourselves. Sometimes we get a label or diagnosis but there might be multiple other co-occurring things going on. Wishing you the best, hoping you get some answers and treatment to help out. Myositis is fairly rare so it’s not a standard panel to run but with your issues and mention of autoimmune certainly something to consider as a possible piece in the puzzle.

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