Long Term PPIs leading to ESBLs

Posted by mlhutchinson @mlhutchinson, Jun 8 11:25pm

I have been taking Protonix 2 tabs. 40 mg. for 22 years. It was prescribed over and over, but was never tested to determine if it was working, could it cause other problems, or when do you stop needing it…. All good questions that I should have asked, but I did not think it was necessary, after all knowledgeable doctors were prescribing the medication. Well, long, long story short, all of my many UTIs from 2014 till October 2021 (over 30) finally turned into klebsiella pneumoniae ESBL. Now after 8 months of continuous fever, back/side pain, extreme pain while urinating, and absolute horrible smell, 2 infectious disease doctors, 2 urologists, and of course, my GP, besides being hospitalized in October and the hospital never notifying anyone of the ESBL outcome, what is the answer? The current infectious disease doctor told me to go to the ER as the Minocycline 100 mg two times a day I've been taking for one month has not helped. I am now only taking one 40 mg tablet of Photonix every other day getting myself down to stopping the medication, and, hopefully, gaining back needed bacteria to fight off this wonderful disease. So, now what?

Interested in more discussions like this? Go to the Infectious Diseases group.

Hello @mlhutchinson and welcome to Mayo Clinic Connect. I can imagine you feeling like hindsight is 20/20 with regard to initially questioning the medication duration, however, sometimes we simply don't know what we don't know. I am sorry to read you are finding yourself at this difficult position now with your multitude of symptoms.

I'd like to bring in members @seeny and @moragsmum given they've shared about ESBL previously on Connect to see if they may be able to share an update of their respective experience with you.

Can I start by asking if you've taken the infectious disease doctor's advice and went to the ER?

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@amandajro

Hello @mlhutchinson and welcome to Mayo Clinic Connect. I can imagine you feeling like hindsight is 20/20 with regard to initially questioning the medication duration, however, sometimes we simply don't know what we don't know. I am sorry to read you are finding yourself at this difficult position now with your multitude of symptoms.

I'd like to bring in members @seeny and @moragsmum given they've shared about ESBL previously on Connect to see if they may be able to share an update of their respective experience with you.

Can I start by asking if you've taken the infectious disease doctor's advice and went to the ER?

Jump to this post

I did not go to the ER as I never heard from anyone at UTSW. The following Friday I requested a new infectious
doctor as no communication about this situation is not good. I then looked up the tests to take if I had sepsis, scheduled an appointment to see our NP at our regular doctor's office and asked her to order them for me, which she did. I do not have sepsis as per test results. I then wondered as my numbers had changed with my MGUS slightly could that be the problem. GP did order a bone density scan in 2021. The
original scan, in 1998, said my bone density was that of a twenty year old even though I was 45 at the time. Now, I have lost over half of my bone density.
I contacted International Myeloma Foundation for information and Judy Webb called me last Sunday and she recommended me go to a doctor who specializes in MGUS instead of the original Oncologist I had gone to in 2017. (Doctor staff refused to ask the insurance company for clearance for X-Ray/Bone Marrow 3X, so I just gave up on this) Anyways, Judy from the International Myeloma Foundation told me to schedule an appointment with Dr. Larry Anderson with UTSW which Humana insurance will cover, but he does not take my plan, but they will make an exception. Who knows!!! So, I still have temps from 98.0 – 100.4 everyday, nausia, pain on right side, still have UTI with that specific pain, totally exhausted no matter how much sleep I get. I was diagnosed with Lynch Syndrome in 2015, MGUS in 2017, Klebseilla Pneumoniae ESBL in 2021. I can literally trace from 2014 until now 30 UTIs ending up with ESBL. I have a copy of my complete history if you are interested.

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Test results for sepsis:
CBC that might be interesting but OK:
WHITE BLOOD CELL COUNT 9.5 Reference Range: 3.8-10.8 Thousand/uL
PLATELET COUNT 169 Reference Range: 140-400 Thousand/uL
ABSOLUTE LYMPHOCYTES 3762 Reference Range: 850-3900 cells/uL
ABSOLUTE BASOPHILS 38 Reference Range: 0-200 cells/uL
C-REACTIVE PROTEIN 10.7 H Reference Range: <8.0 mg/L
PROCALCITONIN <0.10 Reference Range: <0.10 ng/mL
CULTURE, BLOOD (SEE NOTE-What note?) No growth after 5 days

PROTEIN, TOTAL AND PROTEIN ELECTROPHORESIS:
PROTEIN, TOTAL 7.7 Reference Range: 6.1-8.1 g/dL
ALBUMIN 3.5 L Reference Range: 3.8-4.8 g/dL
ALPHA 1 GLOBULIN 0.4 H Reference Range: 0.2-0.3 g/dL
ALPHA 2 GLOBULIN 1.0 H Reference Range: 0.5-0.9 g/dL
BETA 1 GLOBULIN 0.5 Reference Range: 0.4-0.6 g/dL
BETA 2 GLOBULIN 0.3 Reference Range: 0.2-0.5 g/dL
GAMMA GLOBULIN 2.0 H Reference Range: 0.8-1.7 g/dL
ABNORMAL PROTEIN BAND 1 1.6 H

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@mlhutchinson

I did not go to the ER as I never heard from anyone at UTSW. The following Friday I requested a new infectious
doctor as no communication about this situation is not good. I then looked up the tests to take if I had sepsis, scheduled an appointment to see our NP at our regular doctor's office and asked her to order them for me, which she did. I do not have sepsis as per test results. I then wondered as my numbers had changed with my MGUS slightly could that be the problem. GP did order a bone density scan in 2021. The
original scan, in 1998, said my bone density was that of a twenty year old even though I was 45 at the time. Now, I have lost over half of my bone density.
I contacted International Myeloma Foundation for information and Judy Webb called me last Sunday and she recommended me go to a doctor who specializes in MGUS instead of the original Oncologist I had gone to in 2017. (Doctor staff refused to ask the insurance company for clearance for X-Ray/Bone Marrow 3X, so I just gave up on this) Anyways, Judy from the International Myeloma Foundation told me to schedule an appointment with Dr. Larry Anderson with UTSW which Humana insurance will cover, but he does not take my plan, but they will make an exception. Who knows!!! So, I still have temps from 98.0 – 100.4 everyday, nausia, pain on right side, still have UTI with that specific pain, totally exhausted no matter how much sleep I get. I was diagnosed with Lynch Syndrome in 2015, MGUS in 2017, Klebseilla Pneumoniae ESBL in 2021. I can literally trace from 2014 until now 30 UTIs ending up with ESBL. I have a copy of my complete history if you are interested.

Jump to this post

@mlhutchinson I am not a physician but if it were me experiencing this, I would get an appointment this week to continue to explore the symptoms or go the ER if symptoms get worse.

It's been 8 days, how are you doing currently?

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Just so happens, I came to the ER this morning. There had been a urine culture run on Thursday, with the results on Sunday – 100,000 Colonies klebsiella pneumoniae ESBL. Lots of pain on right middle back, and the right middle front was swelling Saturday, who knows. I have fever ranging 97.0 to 101.5 constantly, nausia, diarrhea, extreme pain when urinating. Now I've been in the ER for 4 1/2 hours, and they have drawn my blood, CT on stomach area, urinalysis done. I did text Cathlene Cole, PA to Dr. Larry Anderson, twice that I was going to the ER this morning , then called and left message as she was with a patient. CathleneCole called me back and said she would call the ER stating I was there because I needed IV antibiotics, again, who knows. All I know is I'm laying here with pads under me to urinate on instead of my 12 pads & diaper that I normally use as I am totally incontinent. My back is really bad, I've lost all discs in my spine and the vertebra from L4 down have collapsed pinning down the nerves. I did explain this to the nurse, and her reply was, are you sure! After 22 years and 30 surgeries, yes I'm sure! The nurse said she needed a urine sample and, stupid me, I thought she was going to catherize me. Nope, wrong! The nurse got what she needed, and left the rest in a cup on the table for me to stare at for the last 30 minutes. I am very cold, which is so very usual for me, and my blood sugar is 72, which is getting low for a diabetic. I guess the ER is the first hurdle. Let's see bow high I can jump!!!

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