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UNEXPLAINED SEPSIS/BACTEREMIA

I've been hospitalized five times since the end of January. 2016 for recurrent Sepsis.  The offending bacteria include E. Choli, Enterococcus, and others that live happily in the bowel.  Admissions have ranged from 4 to 9 days.  After the 4th admission, doctors said they didn't know what the underlying problem was, and suggested I might have better luck at Mayo Clinic or elsewhere.  

After two visits to Mayo in MN, where nothing was found, I was admitted the 5th time back home.  There were no significant tests done that hadn't been conducted previously, so after treatment with Vancomycin and other antibiotics, I was sent home with a script for Levaquin & Flagyl.  Levaquin is a powerful drug, but side-effects were slightly similar to Sepsis symptoms - chills and malaise.  

Prior to my first admission, the onset of full-blown symptoms (fever, uncontrollable, shaking chills, rapid pulse, etc.) followed 3-4 days of feeling increasingly ill and sleeping a lot.  That precursor has reduced significantly.  The last onset of full-blown symptoms occurred 10 minutes after I noticed feeling slightly chilled.

Not long after the last admission in July, an Infectious Diseases doctor started me on a preventive program using three different antibiotics - the 1st (Amoxicillin) for 30 days, the 2nd for 30 days, the 3rd for 30 days, then repeat the cycle.  That will hopefully prevent the antibiotics from becoming ineffective while keeping the Sepsis from gaining a foothold.  I've also been told to carry Levaquin with me when traveling, and at the first sign of symptoms, start taking it and get a blood draw to confirm or rule out Sepsis/Bacteremia.  Additionally, I have a standing order to have blood cultures drawn if I'm feeling symptomatic.

At times, it feels like the Sepsis and daily antibiotics are at war.  I'm sometimes easily chilled, lack energy and sleep a lot.  I also have blood drawn semi-monthly to evaluate my status.  Doctors have said that continued Sepsis outbreaks will eventually result in resistance to antibiotics, leading to Septic shock and death.  They've also began talking in terms of 'when' I'm next admitted, not 'if'.

Doctors suspect a miniscule break in the mucosa of my bowel allowing bacteria into the blood stream, but apparently the technology to find it isn't available. How do you examine the inside of 30 feet of small intestine?  A colonoscopy found nothing, as did a white-cell-tag scan.

Final notes:  1) I've been on an immunosuppressive (Remicade) for 3 yrs for Rheumatoid Arthritis, which keeps it under control.  Other meds aren't being considered as they're also immunosuppressives, and RA severity has gradually increased; 2) hospitalizations began in late January due to a plugged common bile duct.  However, night sweats and minor chills were occurring 6 months earlier;  3: An MRCP at Mayo was unremarkable; 4) latest labs show significant increases: CRP: 2.84; ALP: 205; SGOT: 93; SGPT: 83.  Other components are normal/near-normal.  ALP has historically been slightly elevated.

My doctors and I are open to suggestions.
3 Responses
19028025 tn?1473906466
Hello!

I am sorry to hear that you are suffering this illness. I have no suggestions. While you could seek another opinion, if you do have an insurance provider that would permit it, it seems you were already in the hands of the "gold standard" in medicine: the Mayo Clinic.

I hope you feel better soon!
1 Comments
Get tested for hepatitis c.   even if u never did anything to get it.  Like IV drugs or old tats and piercing.  30 percent of the people that have hep, don’t know how they got it.  
They r just now starting to explore help c through dental work.  That’s how I got it in 1994!!! NOT ONE DOCTOR OR EVEN FAMILY BELIEVED ME.    Said it doesn’t happen that way through dentistry in developed countries.  Well. Guess what.  It does.  
It can take 20 years to feel symptoms.  Wasn’t that way for me.  2 weeks after a filling I started having weird chills and was so freaking tired.  
Tell them to do a quantitative test FIRST!!!  Don’t just test liver enzymes.  People get false liver enzyme test back all the time. But if they just do the test ASSUMING u have it, they r looking for how much virus is in a MM of blood.  If u don’t have it won’t show. If u do it will. Enzyme test r useless.   I know it sounds far fetched.  But rule it out. Easy blood test.  
THEN READ UR OWN RESULTS.  When I called the office to find out results they told me it was negative.  6 months later I asked for my records and went to another dr. As I was sitting in the office I started reading everything in my file.  
THERE IT WAS.  
PATIENT TESTED POSITIVE FOR HEP C RNA!!!!!!!!’
I was furious.  I had been dismissed and shamed as a malingerer.    I wasn’t and I’m not.  I was very healthy. Very much into sports and fitness. I knew something was wrong big time with my dr.   I have 2 other major illness.  Both ignored by doctors.   I sadly have learned to distrust doctors.      
Avatar universal
Just a quick update.  I'm still alive and kicking, thru the use of prophylactic antibiotics rotation.  The previously mentioned 5 hospitalizations has increased to 12, although none since Feb. 2017 (8 months).  There's not an official diagnosis yet, but my gastro team has been using the term "Leaky Gut", which hasn't been blessed by the AMA, etc. Not much is known about it and there's no known cure.  The only apparent downside of my treatment seems to be an eventual ineffectiveness of a'biotics.  To summarize, I'm doing OK and enjoying life, although dealing with occasional episodes of malaise.  Blood tests and doctor appointments are reduced from weekly to every 3 months.  There's one good thing from the meds - I have had neither a treatment for, nor a symptom of Rheumatoid Arthritis for over a year.  Thanks for your kind wishes.  Toyman
2 Comments
How are you doing now? I hope you found a cure and that you’re okay. I’m sorry you’ve been dealing with this :(
No cure yet.  None of my docs is willing to commit to a diagnosis.  I'm continuing the antibiotics, which are keeping things under control (no hospitalizations for about 18 months), although instances of reflux/heartburn are increasing.  Have put my 'affairs' in order and dealt with almost all needed repairs/updates at my home so my wife won't have to once I'm unable to function or dead.  Thanks for your comment.
Toyman
Avatar universal
Alsoget tested for Lyme disease.  NOT WESTERN BLOT TEST.  To many false negative.  
1 Comments
Got the test, but it was negative.

One quick update:
  October, 2108 - had another admission for 9 days, followed by 25 days on a PICC line.  Diagnosis: Pseudomonas located in a deep liver abscess.  Ultrasound couldn't find it, but blood cultures did after 5-1/2 days.  Found out Pseudomonas isn't responsive to Augmentin or Cefdinir.  Doc added Cipro to the rotating, prophylactic doses of antibiotics.  All is well again, at least until the antibiotics stop working.

New diagnosis by Mayo gastro: probable reflux action between small intestine and liver, bringing the "happy" intestinal bacilli to my liver, which makes me "unhappy".  A surgical procedure is not often effective.  He mentioned he's aware of two others with the same problem, so now I feel a bit less isolated.

Since I seem to have little control over this issue, I think I'll focus my energies on more important things, like 'does Trump know he could help himself a lot by cancelling his Twitter account?'.
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