Endocarditis stories

[BillCobit]

It took my PCP 3 months before he finally diagnosed my endocarditis after presenting with progressively worse symptoms over that time. But in his defense he really was an idiot, so figuring it out in 3 months was probably pretty good for his level of competence.

Great defense!

My symptoms (fatigue, body aches, fever) lasted about a month, but my illness wasn't diagnosed. I fortunately managed to fight off the infection with a few courses of subtherapeutic oral antibiotics and my own immune system. I have no idea how I acquired the infection. A routine physical detected my noisy heart murmur, which started me down the path of diagnostic tests and ultimately surgery. Endocarditis was strongly suspected, but finally confirmed during surgery when the tissue devastation was visualised.

I know that recommendations for prophy antibiotics are being rethought, but as for me, I will insist on them prior to dental work, colonscopy, etc. I never want to experience BE again.

 

[olefin]

I know that recommendations for prophy antibiotics are being rethought, but as for me, I will insist on them prior to dental work, colonscopy, etc. I never want to experience BE again.

I'm with you Bill! I've never had it but don't want to take any chance.
Thanks for your post and to the others that have posted in this interesting thread.

Wishing you the best Diane.

 

[Christina]

Need Two Extractions.

Need Two Extractions.

Because of a faulty installed bridge in 2006, (never seated well the first year after installation) The bridge fell out completely in 2007, was cemented back in and seated better after that but now the first and the last tooth that hold the bridge show one of the teeth has a hairline crack and the other one a lot of accumilated bacteria underneath the crowned tooth. Both teeth have had root canals. It also shows two abscesses on both teeth. I am on my second round of antibiotics (Amoxicillin) and besides the usual Listerine mouth wash the oral surgeon prescribed an oral rinse called Chlorhexidone Glucanate.
They want to extract both teeth. That doesn't sound too terrible, but it does when they want you off Coumadin for the extractions and bridge with Lovenox. I don't see other options at this point and have pleaded my case to my regular dentist, a specialist and the oral surgeon and they won't listen to my reasoning. The oral surgeon wanted the cardiologist involved as well so I put in a call to his office on Friday. He returned my call to get the details of what was going on. He was going to get in touch with the oral surgeon, but since Friday I haven't heard anything and am waiting. I want this over with because infections usually don't get better.
I am feeling fine and hope that this won't turn into a big thing like Endocarditis. When I read those stories that scares me to no end.

 

[Lynlw]

Because of a faulty installed bridge in 2006, (never seated well the first year after installation) The bridge fell out completely in 2007, was cemented back in and seated better after that but now the first and the last tooth that hold the bridge show one of the teeth has a hairline crack and the other one a lot of accumilated bacteria underneath the crowned tooth. Both teeth have had root canals. It also shows two abscesses on both teeth. I am on my second round of antibiotics (Amoxicillin) and besides the usual Listerine mouth wash the oral surgeon prescribed an oral rinse called Chlorhexidone Glucanate.
They want to extract both teeth. That doesn't sound too terrible, but it does when they want you off Coumadin for the extractions and bridge with Lovenox. I don't see other options at this point and have pleaded my case to my regular dentist, a specialist and the oral surgeon and they won't listen to my reasoning. The oral surgeon wanted the cardiologist involved as well so I put in a call to his office on Friday. He returned my call to get the details of what was going on. He was going to get in touch with the oral surgeon, but since Friday I haven't heard anything and am waiting. I want this over with because infections usually don't get better.
I am feeling fine and hope that this won't turn into a big thing like Endocarditis. When I read those stories that scares me to no end.

Christina, I think Ross has all the papers on how this should be done safely, Is getting another oral surgeon an option?

 

[olefin]

Christina, I'm on my third 10 day round of Cephalexin for my root canal. The endodontics has washed out the canals several times with antibiotics. Last time said it look better and he saw no blood. I'm kind of worried about it for we have a 2 week cruise starting this week. I think mine will finally have to be pulled and I'm with you, I do not want to come off warfarin.
But I'm fortunate compared to you for I have only one that's gone bad.
Good luck!

 

[Diane]

Well my cultures were negative on Friday but I woke up running a low grade temp yesterday. For the past 2 weeks, I have felt like I hit a brick wall and didn't have the energy to go around it, getting SOB everytime I tried. Now I feel like I have been splatted against that wall and need someone to scrape me off. I have emailed my doc at Stanford. I am waiting to hear back from him.....probably later today. I am guessing he will want me to have more cultures. I just want to get to feeling better. I don't get sick very often and I am not very good at it.

~Diane

 

[Lynlw]

Well my cultures were negative on Friday but I woke up running a low grade temp yesterday. For the past 2 weeks, I have felt like I hit a brick wall and didn't have the energy to go around it, getting SOB everytime I tried. Now I feel like I have been splatted against that wall and need someone to scrape me off. I have emailed my doc at Stanford. I am waiting to hear back from him.....probably later today. I am guessing he will want me to have more cultures. I just want to get to feeling better. I don't get sick very often and I am not very good at it.

~Diane

You weren't taking any antibiotics before your cultures were you? I hope whatever it is they can figure it out and you start feeling better soon

 

[Christina]

Christina, I think Ross has all the papers on how this should be done safely, Is getting another oral surgeon an option?

I chose this surgeon because a VR. friend recommended him and told me he'll accept patients and doesn't take them off Coumadin. Well, as soon as he heard that I am taking 17mg (down from 26) of Coumadin per day I think he got wet feet and changed his mind. The other one which was mentioned takes his patients off Coumadin as well, so I believe I am out of luck.

 

[Christina]

Today was a good day!

Today was a good day!

Just want to let you all know that you must stay the course and plead your case again and again when it comes to interrupting your anticoagulation therapy for minor surgeries.
As I told you a few days ago I am to have two extractions soon and the (totally uninformed) oral surgeon wanted to take me off Coumadin and put me on Lovenox. As a side, he also believes that anyone on Coumadin is NOT to eat any greens ever.
I pleaded and pleaded with him last week but wasn't able to change his mind . Well, to make long stories short, I had to contact my cardiologist again today because he had forgotten to call the oral surgeon last Friday and in order to proceed with what needs to be done I needed him to do that. His forgetfullness was actually a good thing because I was able to plead my case again to not allow the oral surgeon to interrupt my Coumadin therapy and that any bleeding can easily be controlled with local measures.
Well, he returned my call soon thereafter and informed me that he put in a call to the oral surgeon and told him not to interrupt my Coumadin therapy. I need to bring my INR down to 2.5 though for him to do the extractions, but I am okay with that. Yeah.. No Lovenox. I like that part!
So, today is a good day and we won.
I called the oral surgeons's office later but they were already gone for the day so I have to call back at 8AM tomorrow to see when I can come in for him to do what he needs to do. My INR was 3.7 this morning so I lowered my dosage from 17 to 15mg today so hopefully by Thursday or Friday it'll be around 2.5.

 

[Lynlw]

Good for you, in all ways, for keeping after the docs and it WILL be good for you to not stop your coum

 

[Gail in Ca]

worse than 3rd surgery!

worse than 3rd surgery!

Now that I have survived both my 1st go round with endocarditis and then my 3rd OHS, I have to say the endocarditis was much worse! Six weeks on many antibiotics with a 23 hr bag of one thru a picc line, ugh! I told the infectious disease doc that having BE was harder to recover from than OHS and he sure gave me a surprised look. That was before my 3rd OHS, but after being taken off the antibiotics. It's been almost a yr and it seems like a bad, bad dream. I don't think I'll ever get over it and worrying (in the back of my mind)about getting it again. That staph. lugdunenses was very nasty.
My main symptoms of endocarditis: 100.7 fever, flu-like joint and back pains,
horrible right shoulder pain, all this came in ONE day. The day before I felt just fine. More symptoms came a few days later:feeling very bad, blood in urine, severe headache (due to brain bleed), caused by super high INR caused by the infection. It takes only 1 day to get results of blood culture, thankfully. I feel very lucky to have gotten over this. You can bet my cardio and primary doc will act very quickly if I ever have anything close to these symptoms again!

 

[Christina]

Dear Gail,

I have been reading all the posts on BE and it terrifies me. Your story sounds so scary and you must have gone through hell. I am so glad you made it through because many do not. BE can be deadly! Did you experience any side effects from the heavy doses of antibiotics? Did you get back to good health?
I want to avoid BE like the plague. I must bite the bullit though, muster up enough courage and call the oral surgeon right away in the morning and set up the appointment to get this over with. I am not looking forward to this but it maybe won't be so bad. It's been many, many years that I've had to have a tooth pulled. In this case two. Then later when the mouth heals I have no other choice but to have an implant put in. Just when you think you are a bit ahead financially, something like this hits, and dental insurance these days is for the birds. Doesn't cover much. Big dollars $$$$ It never ends.. sigh...

 

[Gail in Ca]

Christina,
The antibiotics made me feel very nauseated. I was given something to take for it, but it was very expensive and didn't work very well. So, I wasn't eating all that much, and I lost 10lbs. On me, it was alot. I don't have any lasting effects from the antibiotics. I am doing really well. I actually feel better than I have in a long time, now that my valves are new/repaired.
Take heart about getting endocarditis. It is rare to get it. I wonder, though, if most get it from the mouth bacteria. Mine was a mystery on how I got it.
It is a staph that lives on the skin of 30% of the population.
Of course my surgeon and cardiologist want me to continue taking antibiotics before any dental work. But, I go to the dentist 2X's a yr and keep my teeth brushed and flossed religiously. It seems as though the biggest risk for getting it from the mouth is from those that never go to the dentist for a cleaning, etc, and the mouth harbours a certain staph strain different from the one I got.

 

[Roger Frank]

I've recently started gargling with one cap of (3% dilution) Hydrogen peroxide mixed with one cap of H2O. Many doctors encourage this (including my own) to help tame the oral staph bugs.

My 2 cents,

 

[Christina]

I've recently started gargling with one cap of (3% dilution) Hydrogen peroxide mixed with one cap of H2O. Many doctors encourage this (including my own) to help tame the oral staph bugs.

My 2 cents,

Hi Roger,

I cannot stand gargling with Hydrogen Peroxide. It foams up and makes me sick to the point that I throw up. It also makes my teeth hurt. My husband says the same thing so we discontinued using the stuff.
But I know a lot of people using this and it seems to work for them. That's a good because it's cheap. $2.00 a bottle at Costco.

 

[Petros]

Christina, symptoms include fever, cold like symptoms, rigors, sweats and fatigue. These were my symptoms and unfortunately a faulse diagnosis that all of the above were due to a sore throad ended with AVR. No dental work, no nothing at that time. Still a mystery.

 

[olefin]

I've recently started gargling with one cap of (3% dilution) Hydrogen peroxide mixed with one cap of H2O. Many doctors encourage this (including my own) to help tame the oral staph bugs.

My 2 cents,

A Chinese GP doctor once told us he never had a common cold even after examining all the infected people daily in his office. He said he daily gargle a equal mixture of Hydrogen peroxide, Listerine and water.

Christina, that's great that your cardiologist changed his mind about stopping coumadin for your extractions. Not sure what mine will want if I have to have the tooth pulled. But I'm firmly against stopping coumadin.

 

[Christina]

A Chinese GP doctor once told us he never had a common cold even after examining all the infected people daily in his office. He said he daily gargle a equal mixture of Hydrogen peroxide, Listerine and water.

Christina, that's great that your cardiologist changed his mind about stopping coumadin for your extractions. Not sure what mine will want if I have to have the tooth pulled. But I'm firmly against stopping coumadin.

I have a date with the oral surgeon tomorrow at 1PM. I am a bit anxious and am not looking forward to this. Hope all goes well. INR down to 2.8 today. Checking again tomorrow morning but 2.8 is close enough. I'll tell the surgeon 2.5. He'll never know the difference. I am the one testing and in charge.

 

[olefin]

He'll never know the difference. I am the one testing and in charge.

So right.
Good luck!

 

[Christina]

All went well.

All went well.

All went well today with the two extractions. No bleeding to speak of, and I was able to stay on Coumadin with an INR of 2.5. The anesthesia has worn off now and I can feel it alright. It is throbbing. I took another pain pill just now and I couldn't wait to take it because the past two hours have been very uncomfortable. Hopefully I can sleep tonight and tomorrow will be another day, and hopefully a good one. Probably have pain for the next couple of days.
Thanks for all your support.