Endocarditis ?

[Gary Miller]

Have any of you that had the misfortune of having endocarditis, that didn't show the classic symptoms of infection i.e. elevated white blood count and fever? I had been experiencing some weird symptoms for the last couple of months and the PCP has ruled out infection. I have been having constant head pain, chest fullness, achy joints, shortness of breath, and numbness in the hands. Cardio said the EKG looked good, BP was a little high (138/85), and the valve sounded good. The PCP sent me to ENT and he diagnosed sinusitis and said "I cant do anything for that as you are on Coumadin." The CT scan noted a 1 cm benign mucosal retention cysts that can be removed, but he won't because of the Coumadin and that it isn't causing the headaches and the rest anyway. I know some of you have posted that endocarditis causes a lot of these symptoms and is sometimes hard to diagnosis, so I'm just looking for ideas as to what would cause this at 17 months out. I feel pretty miserable most of the time lately.

 

[Jkm7]

Have you specifically asked your cardio to check you for endocarditis?

I'm very sorry to read how unwell you are feeling and hope your doctors find the cause soon and get you
feeling better.

 

[dfelder]

Have you had your blood proteins checked lately? That was my problem and my symptoms were very similar. Just an overall feeling like a truck ran you over.

 

[Adrienne]

I think that the only way of being sure is to have a blood culture done.

 

[newmitral]

Hello Gary,

I had endocarditis without many of the classic symptoms. This resulted in a 3 month long series of tests to try to figure out what was wrong, while I steadily deteriorated.

Endocarditis is indeed difficult to diagnose, and can present with many different symptoms. That said, the symptoms you describe almost sound like Lyme Disease, rather than endocarditis. You might want to get tested for that.

But, I would ask your doctor to do some specific blood tests. A sedimentation rate, and C-reactive protein test may show signs of non-specific infection, which could then be followed up by a blood culture to see exactly what bacteria may be there, if any. If it is endocarditis, this would provide key information.

In my case, I had a persistent cough and eventually night sweats, but NO fever - so I lacked that classic fever sign of endocarditis infection.
My blood was also quite anemic, and my spleen was enlarged, which led the doctors to look for things other than endocarditis. In the end, the anemia and enlarged spleen were caused by the endocarditis, and both resolved after my valve was replaced and a 6 week course of IV antibiotics killed off the bacteria infection.

As an aside, I have also had sinusitis, with endoscopic surgery to remove nasal polyps/cysts. This can be done even if you are on coumadin, although mine was done prior to my heart valve replacement. If the surgeon doesn't want to do it while your INR is elevated, you can simply go off coumadin for the surgery and bridge with Lovenox for a week of so.

Hope this helps.

 

[Gary Miller]

I was treated for Lyme disease by my PCP as we have a dog and sometimes we have found a tick on him every now and then even with all the tick spray and collars we use. She prescribed the 10 day Doxicillian course and it didn't help any of the symptoms, but like you said, it sure sounded like Lyme.

 

[marc_kowal]

I was diagnosed with Lymes Disease in my early 20's and given Amoxicillin. Diagnosis at the time made sense since I was a landscaper in those days. When they first discovered my Bicuspid Aortic Valve at age 30, they also noticed "out-pouching" /aneurysm on my echo and they believed it to be an active case of endocarditis going on. They admitted me into the hospital, and did blood work on me. My blood work came back clean and then they started to do a thorough medical history review and they surmised that the "Lymes Disease" was misdiagnosed and it was actually endocarditis. Luckily the meds. they prescribed for the "Lymes Disease" took care of the endocarditis or I may not be here today. They damage they were currently seeing on the echo was old damage.

 

[Rick]

I had persistent cough, was incredibly tired, and kept getting a flu on and off for 3 months. Eventually, the cough was so bad that I could not speak. I was sent to speech therapy. Separately I was on antibiotics every three weeks when I had fever. Eventually, 5 months later, I was diagnosed for the first time ever with a bicuspid aortic valve. My blood cultures came back 3 clean, and 1 with staph, so the MDs assumed the staph was an accident. I was short of breath and could not hold regular conversations at work. Eventually, the cardiologist and infectious disease MD spoke and agreed on doxycycline --- all that came up was a bacteria that apparently often times is not picked up in the blood cultures and they treated me for that. I was told to expect surgery within 3-5 years. This was 5.5 years ago and things stabilized once I was given antibiotics. I was actually on them for a year.

Endocarditis is simply an infection in the tissue surrounding the heart or inside it so it can be from anything. It is very difficult sometimes to diagnose. In my case, both the cardiologist and infectious disease MD agreed that I may or may not have had endocarditis - they will know probably once they look at the actual heart valve. Like Marc above, I sometimes feel I was lucky in being treated with something that worked even with doubt about the underlying cause.

I think you ought to be persistent until you either get better or get a diagnosis. Don't let an MD who can't figure something out dissuade you or discourage you. (That happens as they get frustrated if they don't know sometimes).

By the way, I also have had numbness in my hands but it was after I began talking an ACE inhibitor. Have you had any changes in meds?

 

[Adrienne]

It was only when I went to the ER that a very good ER doctor suspected endocarditis. I not only had blood cultures done, but I had a TEE which showed vegetation on the valve.

 

[carolinemc]

A Cardio will not look for viral infections, best to go to your regular doctor have blood work done to determine what you may have. Tell the doctor how you feel and are worried about. And you can be treat for sinusitis with over the counter medications, I do without it interfering with the Coumadin(warfarin). Best get blood work done to properly get a diagnosis. You will get tired of the needles, if not already. Good luck, hugs for today.