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Long Term PPIs leading to ESBLs
Infectious Diseases | Last Active: Jun 27, 2022 | Replies (5)Comment receiving replies
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?
Replies to "Hello @mlhutchinson and welcome to Mayo Clinic Connect. I can imagine you feeling like hindsight is..."
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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.