Endocarditis

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mecretired

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Apr 28, 2010
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Southeast Missouri, USA
My pcp thinks I may have endocarditis. Crp is 5.152. I had influenza A at the end of March (yes I had my flu shot). I had a 102 temp that they didn’t treat because it was the flu. By the time they diagnosed the flu it had developed into an upper respiratory infection. So I had this temp for just over 2 weeks before I got antibiotics. Then on the first of July temp came back. This was a kidney infection which caused lower back muscle spasms and an erratic heart rate for about 3 weeks. Temp came back late July. A third round of antibiotics. Well yesterday temp came back yesterday. urinalysis and wbc are good. But crp is not good. Will try to get an appointment with cardiologist tomorrow. Can anyone give me some information on their experience with endocarditis? I have a grafted st Jude valve—9 yrs ago.
 

pellicle

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I am sorry I can't give you any direct advice about endo as I've not had it (a matter which I'm not sorry about).

I understand that endo can be treated in some circumstances with mechanical valves but this is probably going to involve lengthy periods of antibiotic therapy.

I guess that fist things first, get a proper determination.

If you end up on antibiotics and need some assistance with managing your INR please give me a shout out.
 

tom in MO

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I have no experience with endocarditis, but there are forum posts and I believe some threads on the subject. The take away message I got was to make sure you get good care ASAP. You don't say if you are back on antibiotics or if they have changed them. I'd call your cardiologist and leave a message. Some of the stories on the forums included hospitalization and several weeks of infusions.

My only experience is when my dog bit me (you know the old saying "let sleeping dogs lie" that applies double to old blind MO dogs). My PCP was real concerned about endocarditis when I got a severe infection, I should have got antibiotics the day it happened instead of waiting until I had an infection. I was bit on the hand and the infection had spread to my wrist and later, after medication, up to my elbow. I got pills, a shot, and had to come back every two days until it was clear the drugs were working.
 

Protimenow

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There's a recent thread with the misspelled title Endocarditas. Perhaps there'll be helpful information there.
 

Warrick

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Do you have any other symptoms like splint bleeds in your nails or petachiae rash?
I developed petachiae rash with a lung infection but wasnt endo but it is a sign.
 

mecretired

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No I don’t have any symptoms. My cardiologist is 4 1/2 hours away. He’s not convinced it’s endocarditis. So my pcp is treating me with 10 days of Bactrim and a z pack at the same time. Watch out INR! If this doesn’t work I will insist on an appointment with my cardiologist.
 

ARossGuy

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DFW, Texas
I had a bout of endocarditis in 2017. My PCP tested me for the flu but test came back negative. They said I had "viral syndrome" and sent me home with a Rx for low dose steriods. I still felt crappy for two weeks and started to develop a cough. Went back and this time told me it was bronchitis. Luckily it was time to see my cardiologist and I mentioned it to him. He immediatly ordered a blood culture which confirmed I had a blood infection (enterococcus faecalis). Was immediately started with IV antibiotics and stayed on them for 6 weeks. A trans-esopheal echo-cardiogram (TEE) showed a small vegitation on the leaflet of my Aortic On-X valve which luckily disappeared after the 6 week antibiotic therapy. No damage to other valves but recently found out I have a small calcified veg on the pulmonary valve that may have been overlooked in 2017.
Bottom line, recommend you get a blood culture immediately to either confirm or rule out endocarditis.
 

mecretired

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When talking with my pcp’s nurse today I asked about a blood culture. I don’t know if she actually mentioned it to the doctor or not. When the nurse called back she told me the doctor was prescribing the 2 antibiotics. If I’m not 100%better by the end of the antibiotics I will demand a blood culture. I think the nurse didn’t even mention it to the doctor because my doctor is awesome. I’m surprised that she didn’t do a blood culture when I had my other labs. Thanks everyone. It’s been a real comfort to me for the last 9 years having all of you to learn from. I have to admit I was a little panicked when I first had my st Jude grafted aortic valve——and warfarin!!
 

Protimenow

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What's the big deal about ordering a blood culture? Wouldn't finding out now be safer than hoping the antibiotics knock out whatever it is you have? If the antibiotics don't help, what kind of damage would another week or two of endocarditis do to you?
 

mecretired

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What's the big deal about ordering a blood culture? Wouldn't finding out now be safer than hoping the antibiotics knock out whatever it is you have? If the antibiotics don't help, what kind of damage would another week or two of endocarditis do to you?
I agree with you 100%. I will pursue this. Why not know for sure? Can any lab do the blood culture?
 

Duffey

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If you’re near Columbia, our son is a lab scientist at University hospital and he says yes, both Boone and University run them.
 

mecretired

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If you’re near Columbia, our son is a lab scientist at University hospital and he says yes, both Boone and University run them.
Our kids live in Columbia. I had my surgery at Boone. If I have to drive to Columbia for a blood culture, I will. I intend to talk to my pcp (probably her nurse) and demand the test. If they can’t do it in cape Girardeau she can give me the order and I will go to Columbia. Thank you for the info.
 

Duffey

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They can do it in Cape. That’s where I live. Do you use one of the cardiology groups there? I had my replacement done in STL but have a local cardiologist. Small world . . . !
 

NealR

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West Chester OH, USA
I had a terrible bout with Endocarditis and all my doctors and ER doctors and cardiologist missed it, for at least 3 months. I was prescribed one antibiotic another, from zpacks to levaquin, until finally the gp ordered the BC. Had to have an 8 week vanco IV, but somehow made it. My heart valves were bad, and speculate this may have had something to do with the endo. Had OHS to replace both my bioprostehric valves (avr, mvr) on a redo. They lasted about 9 years. The surgery went terrible, had to be put on an ecmo for 3 days as my lungs filled with fluid due to a reaction to the blood transfusion (is this something I should investigate?). I'm 59, but after 13 weeks from sugery, I'm about fully recovered. I was considered high risk. Moral of the story, if you come down with flu like symptoms; body aches, fever, ask for a BC. And it is possible to get this {endo} even if you propalate before routine dental cleanings. Lot of good topics on this onr
 

mecretired

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Messages
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Southeast Missouri, USA
They can do it in Cape. That’s where I live. Do you use one of the cardiology groups there? I had my replacement done in STL but have a local cardiologist. Small world . . . !
Wow! You live in Cape! I line in Sikeston. I was a patient of a cardiologist in cape until I had my annual echo in 2010. He walked into my exam room and said my ascending aorta was 5.4—but it had been normal the year before!?!?!? He ordered a ct scan to confirm and left my exam room after about 5 min total. I’ve not seen him again. I found a wonderful cardiologist in Columbia and had my surgery at Boone hospital. My cardiologist in Columbia assured me that the cardio in Cape missed my aneurysm. I go back to Columbia for my annual checkups. My kids and grandkids live there. I have a great pcp in cape. I’ve known her since she was in 5th grade. She can make the lab request. I will call her tomorrow. I can be quite insistent.
 

mecretired

Well-known member
Joined
Apr 28, 2010
Messages
179
Location
Southeast Missouri, USA
I had a terrible bout with Endocarditis and all my doctors and ER doctors and cardiologist missed it, for at least 3 months. I was prescribed one antibiotic another, from zpacks to levaquin, until finally the gp ordered the BC. Had to have an 8 week vanco IV, but somehow made it. My heart valves were bad, and speculate this may have had something to do with the endo. Had OHS to replace both my bioprostehric valves (avr, mvr) on a redo. They lasted about 9 years. The surgery went terrible, had to be put on an ecmo for 3 days as my lungs filled with fluid due to a reaction to the blood transfusion (is this something I should investigate?). I'm 59, but after 13 weeks from sugery, I'm about fully recovered. I was considered high risk. Moral of the story, if you come down with flu like symptoms; body aches, fever, ask for a BC. And it is possible to get this {endo} even if you propalate before routine dental cleanings. Lot of good topics on this onr
I’ve been caught between my pcp and cardiologist. Pcp seems pretty sure it’s endocarditis without the blood culture. Cardiologist is not so sure. This is the 4th time since March I’ve been on antibiotics—3rd time since first of July. I had a serious case of road rash on my knee due to a fall on a concrete driveway the end of June.
 

Duffey

Me and Granbon
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Messages
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Location
Far side of the moon
Wow! You live in Cape! I line in Sikeston. I was a patient of a cardiologist in cape until I had my annual echo in 2010. He walked into my exam room and said my ascending aorta was 5.4—but it had been normal the year before!?!?!? He ordered a ct scan to confirm and left my exam room after about 5 min total. I’ve not seen him again. I found a wonderful cardiologist in Columbia and had my surgery at Boone hospital. My cardiologist in Columbia assured me that the cardio in Cape missed my aneurysm. I go back to Columbia for my annual checkups. My kids and grandkids live there. I have a great pcp in cape. I’ve known her since she was in 5th grade. She can make the lab request. I will call her tomorrow. I can be quite insistent.
I absolutely, positively understand what you’re saying about your first cardiologist. I changed cardiologists in Cape four times before finally finding one that I trust. One son lives in Columbia, another in Fayette, about 25 miles northwest of Columbia. We’re on I-70 about once a month to visit them and the grandkids (two were born at Boone). Good luck getting this current situation resolved!
 

mecretired

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Joined
Apr 28, 2010
Messages
179
Location
Southeast Missouri, USA
I absolutely, positively understand what you’re saying about your first cardiologist. I changed cardiologists in Cape four times before finally finding one that I trust. One son lives in Columbia, another in Fayette, about 25 miles northwest of Columbia. We’re on I-70 about once a month to visit them and the grandkids (two were born at Boone). Good luck getting this current situation resolved!
Thanks Duffey. We made monthly trips to Columbia for years but have slowed down the visits. We may have been on I70 at the same time.
 
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