Bacterial Endocarditis fear

[Kate]

For the past eight weeks, I've gotten several sore throats with fatigue but no fever. This isn't too unusual as I have allergies but, because of my fear of infection, I've taken a total of 3 rounds of antibiotics and the sore throat goes away for awhile and then comes back. I met with my cardiologist last week for my annual check-up, and he basically said not to worry about it. But now I have another sore throat and this time I have a low-grade fever (just slightly over 99 degrees.) Am I worrying for nothing? I haven't had a night sweats or a fever over 100. I just don't know what to do - if I call my cardiologist, I'm afraid he'll think I'm a hypochondriac, but I'll feel awful if I find out I've let it go and there is something going on. My GP gave me a dose of stronger antibiotics this time, and I'm tempted to just see what happens. Sorry for the long post, but what do you all think? Thanks, Kate

 

[Karlynn]

When in doubt..... At the very least I think you can legitimately express concern over why you continue to have sore throats and need to find the root cause.

It's probably nothing, but we valvers are super protective and for very good reasons.

Best wishes.

 

[Marguerite53]

How does one check to see if it is endocarditis? If it is an easy look-see kind of thing, then why not push with your concerns. Keep in mind, you are stressing over it! Stress is not healthy! You may need an answer in order to get your mind off the possibility.

Ever since my kids were echoed (and little discrepancies found) I've wondered how a person knows that it's endocarditis before it's gotten out of hand. How do you know? How do you find out?

Your health is important. Answers are important. Press on if you are concerned. It's your right and your peace of mind.

Marguerite

 

[Kate]

Thank you both for your speedy response - as much as anything I think I'm just lonely. No one else I know has any of these concerns and, while my significant other is supportive, it's just easier for people who've gone through it to get the level of stress I'm feeling about this.

I don't exactly know how they test for endocarditis either, but I think it involves blood tests. Now that I'm on these heavy-duty antibiotics, I'm not sure anything would even show up. Perhaps someone else will show up who knows more about.

Thanks again, Kate

 

[nia]

Would you be able to see/get a referral for an infectious diseases doctor? That's who I see for sore throats (she is actually sort of my PCP, even though my insurance doesn't require one).

You could get a strep test, or press for a blood culture.

Keep in mind though that taking antibiotics can mask bacterial growth...so if tests come back negative and you still have symptoms, press your cardiologist and infectious diseases doctor.

FYI, my endocarditis was waaaay out of control by the time it got diagnosed (all blood cultures negative, TEE showed robust bacterial colonies on mitral valve...), and infectious diseases doctor immediately joined my care team. She handled the infection, cardiologiest took care of the heart (valve).

Hope it's nothing more than dry air.

 

[Natanni]

Hi Kate

When in doubt, always check it out. Nathan's endocarditis got missed initially by his first visit with his cardio , and confirmed 5 days later. Serum blood cultures are drawn, and I am not sure how long you need to be antibiotic free for them to be accurate. I don't remember Nathan complaining of a sore throat, but dull headache; Low grade fever 99-100. This went on for along time, weeks. His CBCs all were coming back negative. I also remember roaming pains, one day in his leg, the next his arm. He was infected on June 9 and grew postive cultures for strep viridans on July 17th or 18th. Yes, he did have the raging night sweats. If you don't feel good, don't hesitate to get this looked into further, okay

 

[aussiemember]

Kate,

For the first six months of this year I had continual sore throats that would come and go regularly. My GP tried me on two different courses of antibiotics but when they didn't work she sent me to an ear, nose and throat surgeon. He looked down my throat with a special microscope (that went through my nose - ouch) and diagnosed me with severe stomach reflux that was burning my throat. I'm just letting you know this as some sore throats are harmless - HOWEVER - I didn't have a fever and therefore your case sounds different. I would definitely get it checked out more if I was you - insist on some answers....

 

[Lynlw]

Thank you both for your speedy response - as much as anything I think I'm just lonely. No one else I know has any of these concerns and, while my significant other is supportive, it's just easier for people who've gone through it to get the level of stress I'm feeling about this.

I don't exactly know how they test for endocarditis either, but I think it involves blood tests. Now that I'm on these heavy-duty antibiotics, I'm not sure anything would even show up. Perhaps someone else will show up who knows more about.

Thanks again, Kate

They draw blood cultures. When Justin had his, he had fevers off and on for a few weeks, usually at night, and just felt yucky, I was taking him to the ped a couple times a week but had alot of docs and never saw the same one 2 times in a row, they kept dxing him w/ different things a cold a stomach virus throw him on antibiotics he would be beetter for a day or 2 then it would start all over again, finally I yelled (seems I had to do that alot) and told them it was NOT different things every week it is the same thing, they tried to tell me since he had the first virus he was run down saw got everything else going around. i insisted on blood cultures, which they orderred but gave us a script of antibiotics to take when they cultures came back normal. well they were wrong, he had positive blood cultures. actually that was the last time we went there i had a new ped group before he was discharged.
have you taken the new antibiotics? sometimes they will mask the blood cultures, but I would call and ask for a script to get blood cultures drawn. at least that way you won't have to worry about it, Lyn

ps I just reread your post and saw you went to the card last week, did he do an echo? lots of time you can see the BE on the valves w/ an echo

 

[Dustin]

It's better to be safe than sorry. Try to convince your cardio or anyone you're dealing with regarding your valve to test your blood. Anyway, as far as I understand, endocarditis is typically caused by poor dental hygiene or the more bloody dental procedures. So as long you dental hygiene is OK, you've probably nothing to worry about. But then again, not worrying is easier said than done...

Best wishes,

 

[Ross]

Kate I don't know for absolute certain, but I go through sore throats about every other month. They just happen and I think Randy has them as well. I think you have a legitimate concern if your running a slight fever with it. Ours never have a fever involved, just the throat pain. I think you'd be well within normal limits to have it checked out.

 

[Kate]

Thanks all for reinforcing my decision to get this checked out. We don't seem to have an infectious disease dr. in our little town, but I'm scheduled to see an ear, nose and throat guy early next week. It just feels better to be taking some action! Kate

 

[MikeHeim]

I know what you are going through exactly. For about a month, starting in mid-May, I had a minor cough and sore throat about every other day. I had never had a chronic illness, so I was somewhat concerned knowing that these were both symptoms of endocarditis. After about a month, I suddenly got a fever - this got me really scared. I went to the doctor, who (like you) told me that it was nothing to worry about. He put me on the Z-Pac, and things seemed to get better for a couple weeks. I then started to get a sore throat again, the cough returned, and I went back to the doctor. He again put me on the Z-Pac. I again got better, but the cough and sore throat again returned in about two weeks. This initiated trip #3 to the doctor. At that point, the doctor told me to just treat myself better. Rest, get plenty of fluids, cut out high-intensity exercise, stop drinking, etc. I was very concerned about endocarditis at this point, but I did not have any of the other "classic" symptoms, such as loss of appetite, fatigue, SOB, so I didn't press the issue. After a couple weeks of treating myself "better", the sore throat actually went away, and so did the cough. I guess the doctor was correct.

I certainly would not discourage you from pressing the issue, but I just wanted to let you know that you probably don't need to panic yet.

 

[Lynlw]

Kate when you saw the cardiologist last week did he do an echo? Lyn

 

[Kate]

Lyn,
He did do an echo and said everything looked perfect. I don't know much about this, but wouldn't it take a long time for enough to grow on your valve for it to be visible? Kate

 

[bvdr]

Kate, I think you are right about the endocarditis usually having to be pretty well settled and growing on the valve to show up well on an echo. Even though antibiotics may make an accurate blood culture hard to get they at least may be treating endocarditis if present. Endocarditis is nothing to be ignored through so follow your instincts.

Just another thought: Did you start any new medications lately? Check the side effects of any meds you are on since sometimes a sore throat can be from a medication. I hope you start feeling better soon.

 

[DrAllan]

Kate,

I am a retired otolaryngologist. I consider having had several recurrent sore throats without having a throat culture (complete, not just a rapid strep screen) to be poor medicine. If these are negative then the possibility of reflux is very high. In spite of the worrisome post by aussiemember, looking with a scope is usually not that unpleasant. Depending on all the other medications you are taking, a trial of one of the over the counter anti-acid drugs such as Prilosec might be worthwhile. Although the time course of results is usually several days, some notice improvement in one day.

This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.

 

[Kathy Canistro]

Hi Kate,

I have had the SBE three times and all three times it was different and more severe. Anytime I have a temp > 100 I must have blood culutures to see if there is any bacteria growing anywhere. The first time I was 23 and we thought I had the flu until it lasted more than 2 weeks, I was hospitalized for 6 weeks. The second time was 8 years later and it was strange becuase I would only have a temp sometimes at night and my joints hurt, this went on a about 4 to 5 weeks before the temp came on all time. The last time It nearly killed me and I was in the hospital 3 months and had a second open heart surgey to replace my replacement valves. Please insist on blodd cultures, it is a major inconvience but well worth it.

Take care
Kathy

 

[Natanni]

I think that it is harder to see vegetative growth on aortic vavles with typical echocardiograms. Nathan always had to have TEEs (trans esophogeal echos) and even those missed his vegetations that were there.

 

[Bryan B]

Kate,

I feel your pain. As an unfortunate victim of bacterial endocarditis, anytime I get a symptom that evern vaguely resembles the symptoms I had when I had endocarditis I start to freak out. Recently I started having night sweats. The first thing that went through my head was endocarditis, but I was not running a temperature and did not have the joint pain or fatigue I experienced when I had the real deal. I had recently been put on a new drug, and after some research I found out that a side effect of the drug was excessive sweating and night sweats. I think that for anyone who has gone through the experience of endocarditis it's hard not to be a little paranoid when we have any symptoms that resemble those of endocarditis. The problem is that the symptoms of endocarditis mimic so many other illnesses that it makes it difficult to know if something serious is going on. I know it took my doctors over 4 months to finally figure out that my symptoms were due to endocarditis.

IMO the two definitive tests to detect endocarditis are double blind blood cultures and echo/tee. The thing with blood cultures are that if you are currently taking antibiotics it's very likely you will get a negative result whether you have endocarditis or not. With the echo, unless the vegetations have been growing for months they may not be detected, and most docs wouldn't order a tee unless endocarditis was already highly suspected. In my case my doc tried several round of antibiotics and I always felt better for awhile and then started feeling bad again. He tried several rounds of steriods with the same result...felt better until the steroid regimen was over and then back to feeling crappy.

One thing I noticed was that my white count continued to slowly climb regardless of what antibiotics or other meds I was put on. When they finally did a blood culture I had been off of antibiotics for awhile and my cultures came back positive in less than 24 hours. They did a "bubble" echo 3 days later and spotted the vegetations. You might want to come off of the antibiotics long enough for them to be completely eliminated for your system...then if your sore throats persist have a blood culture done.

I guess this is something everyone who has had endocarditis will always have to live with...the fear of it recurring. In my case I had a prolapsed leaflet on my aortic valve...a perfect breeding ground for the vegitation. I try to look at the glass half full...now that I have an anatomically correct valve I feel my risk of endocarditis is lower. Plus now that I know what the classic symptoms are (including lesions on my hand that I never gave a second thought to) I will be more proactive, even if that means that I might end up being embarrassed that I went to the doctor for something that turns out benign.

 

[Kate]

Bryan,
Thanks for sharing your experience - as you suggest, I think I'm going to finish up this round of antibiotics and if the sore throat comes back again, insist on blood cultures. Do you know how long it take for antibiotics to clear the system? I'd hate to end up with a false negative result. Thanks again, Kate