Endocarditis signs and symptoms

[gregjohnsondsm]

Would someone who has had endocarditis be kind enough to describe their initial symptoms? This might help people (me) get to the ER in time to take some appropriate action. Now that I have had this surgery I don't want to run to the ER every time I get a cold. But I also don't want to be a dope and not get antibiotics when I need them.
I have a personal experience with this infection. My cousin had TAVR the day after I had my OHS. He recovered initially faster and went home sooner. We were keeping close contact and comparing notes. Then he got endocarditis. Vegetation on his new aortic valve and died a few days after being released from mayo the second time.
I am now 5 months post surgery and have been great. Till yesterday. Fever of 102 then back to 98 then up to 101 then back. Kids in our neighborhood have also been sick. So I'm hoping its nothing. But .....

 

[ejc61]

I read your story. I had endocarditis last year. Basically, ran low grad fevers on and off for 2 months. Took antibiotics on and off but fever kept coming back. Antibiotics mask blood cultures so timing is important. I would call your cardiologist immediately. Ask about getting a blood culture done ASAP. If you haven't taken antibiotics for a few days, I would get a blood culture. No need to panic but talk with cardiologist.

 

[cldlhd]

Very sorry to hear about your cousin. I've wondered myself about this . The first few months after surgery I was vigilant about taking my temp everyday but fell out if it after a couple of months-6 months out tomorrow. I was given antibiotics for my 1st two dental cleanings but I took one of the doses when I woke up with a swollen gum one morning-little too aggressive with the floss perhaps. I know that's not proper antibiotics usage but hey .

 

[pellicle]

Hi

I've never had endo, but have read the posts and discussed on the phone at length with people who have had it.

Would someone who has had endocarditis be kind enough to describe their initial symptoms?

Skigirl (who is a member here) has had it and it caused a valve replacement (search out her story here). She reported general feeling crap and assumed it was a flu. The thing that I see is that its almost exactly flu like in symptoms. The lists you can find online (and the descriptions I've seen and heard) would sound like some of the bad cases of flu I've had in my travels.

Err on the side of caution and get any blood tests done before you take antibiotics.

Antibiotics will prevent anything in the culture (where they put the sample) from growing. That's what antibiotics do, they do not kill (your immune system has to do that) they just prevent growth.

This might help people (me) get to the ER in time to take some appropriate action.

if you are feeling ill now, having night sweats and running a temperature, the the appropriate action is to go get to your Dr or hospital now and get that blood test done.

As a metaphor : ts much nicer to put a condom on but didn't need it than get aids.

 

[gregjohnsondsm]

So, based on advice and common sense, I went to the doctor and they took an X-ray of the chest and did a blood test. Results were, blood counts (white blood cells) were normal (5.4). So the Dr determined that I probably did not have an infection or Bacterial infection and that the fevers were probably caused by a virus. Take Tylenol and if the fever wasn't better in 48 hours to return. Fever did go away but after 1 week the constant headache is still there. Anyway, I did not take antibiotics and am hoping that the headaches go away as whatever virus is defeated.

 

[Boomanchu]

It was endocarditis that earned me a trip to the table for my new clicker and every time I think back to when I was losing weight and sweating buckets at night I still can't believe I put off seeing a doctor for so long. It was a visit for back pain that showed my GP a racing heart rate for which he sent me for an echo. I was lucky my dislike of running to a doctor for something that I thought was just a bad flu didn't kill me. I will from now on err on the side of caution. As it turned out the back pain was due to the infection moving into my spine.........then my knees. Scary stuff.

 

[ejc61]

So, based on advice and common sense, I went to the doctor and they took an X-ray of the chest and did a blood test. Results were, blood counts (white blood cells) were normal (5.4). So the Dr determined that I probably did not have an infection or Bacterial infection and that the fevers were probably caused by a virus. Take Tylenol and if the fever wasn't better in 48 hours to return. Fever did go away but after 1 week the constant headache is still there. Anyway, I did not take antibiotics and am hoping that the headaches go away as whatever virus is defeated.

Well that's good news. My white counts were about 12.5 or so. Don't know how long it took to get to that point.

 

[ejc61]

It was endocarditis that earned me a trip to the table for my new clicker and every time I think back to when I was losing weight and sweating buckets at night I still can't believe I put off seeing a doctor for so long. It was a visit for back pain that showed my GP a racing heart rate for which he sent me for an echo. I was lucky my dislike of running to a doctor for something that I thought was just a bad flu didn't kill me. I will from now on err on the side of caution. As it turned out the back pain was due to the infection moving into my spine.........then my knees. Scary stuff.

Glad you're ok. I remember being told by the on-call cardiologist in the hospital that if you get it once, you need to be extremely super dilligent. My regular cardiologist said if I get any fever, go to ER to get a culture, then call his office. We don't get to screw around unfortunately.

 

[gregjohnsondsm]

Fever and headaches returned yesterday. 102.8 up to 103.4. Up and down for 6 hours. Headache was as bad as a tequila hangover. 4 mg of morphine didn't help the pain at all. Had two blood samples taken for blood cultures. 1 from each arm. Went to ER at 9 pm. CAT scan of head. More blood work. X-Ray. Urine sample. Nothing. They wanted to do a spinal tap for meningitis testing but I elected to wait for blood culture results. Two reasons: dr said that meningitis typically doesn't come and go and there was a possibility oofTemp this morning 102 at 8 am. By 9 it was 97. Exactly what happened last week. It appears to get better for a while.

 

[Fundy]

I'm wondering just what the usual diagnosis process for endocarditus is. You mentioned after the first blood test of "probably not a bacterial infection". so is it usual for an initial blood test under such circumstances to not actually check for bacterial infection.

You mentioned a second blood test as "taken for blood cultures". Is this test, "taken for blood cultures", usually conclusive for endocarditis or not. Does this blood test need to be sent to a lab with expertise at a high cost, or why is it avoided? I'm wondering if someone in a similar situation should explicitly ask for a certain type of blood test if worried about this. and what would be the actual "descriptive name" for the test that concludes definitely yes or no, rather than just guessing probably not.

 

[ejc61]

I think a blood sample that one gets during an annual physcial is just a few vials and you leave. A blood culture is pretty much several vials but the difference is that you give samples. Wait 15 minutes, then give more samples. So it's a two step process. I think if one has a valve history, doctors go straight to the blood culture. The culture takes a day or so to develop so after that time, if one's white blood count is high, I think about 12+, doctors determine that you have a possible/probable/definite? bacteria infection. I think...that if one has fevers that cannot be solved, (come and go), by oral antibiotics after 6 weeks or so, and it's discovered you have a high white blood count, you probably have a bacterial infection. I don't think, this in itself, is endocarditis, but it seems to progress fast. At this point, an infectious disease doctor is called in to evaluate. At this point, you will most likely be given IV antibiotics which will probably involve a hospital stay for a few days. I don't think it rules out yes necessarily, but it probably rules out no.
As far as cost, insurance covers this pretty much so it really but I'm not sure how the price differs from a regualr blood sample. A blood culture is not that complex for the technicians.
As my 1 year endocarditis/popliteal aterial thombectomy/fasciotomy episode approaches, I can attest it's no fun. And to top it off, we don't know how I got it which is sometimes the case.

 

[ejc61]

Fever and headaches returned yesterday. 102.8 up to 103.4. Up and down for 6 hours. Headache was as bad as a tequila hangover. 4 mg of morphine didn't help the pain at all. Had two blood samples taken for blood cultures. 1 from each arm. Went to ER at 9 pm. CAT scan of head. More blood work. X-Ray. Urine sample. Nothing. They wanted to do a spinal tap for meningitis testing but I elected to wait for blood culture results. Two reasons: dr said that meningitis typically doesn't come and go and there was a possibility oofTemp this morning 102 at 8 am. By 9 it was 97. Exactly what happened last week. It appears to get better for a while.

Blood culture results will be key. I'm so sorry to hear this.

 

[pellicle]

Hi

I agree that blood cultures will be the key to understanding the situation. I am not certain what bacteria is involved, one of a couple of families (staphylococcus and streptococcus being two) My experience is that surgeons are not microbiologists, nor are most doctors.

I believe you will need to stress to them that the cultures be at identifying endocarditis, in case they are just thinking C-RP is sufficient. Endocarditis can be successfully treated, without revalve so please don't get too anxious just yet

I would doubt that an x-ray would resolve any vegetative mass on your valve (most likely location). I would stress to them that you are a valve patient and higher risk for endocarditis than the general population (sad that I even need to consider saying that).

Keep posting as you learn more.

Best Wishes

 

[pellicle]

Something to read

http://www.clevelandclinicmeded.com/...is/Default.htm

And from the link below [h=2]Diagnostic methods[/h] The essential diagnostic methods for IE are blood cultures and echocardiography.


http://m.clinmed.rcpjournal.org/content/10/2/188.full

 

[pellicle]

Also, I spent 7 days in hospital with their infection specialist saying there was no infection (after the surgeon had done a debridement and there was still pus oozing from my chest.

This may also assist diagnosis

http://cmr.asm.org/content/14/1/177.full
SUMMARY

The etiologic diagnosis of infective endocarditis is easily made in the presence of continuous bacteremia with gram-positive cocci. However, the blood culture may contain a bacterium rarely associated with endocarditis, such as Lactobacillus spp., Klebsiella spp., or nontoxigenic Corynebacterium, Salmonella, Gemella, Campylobacter, Aeromonas, Yersinia, Nocardia, Pasteurella, Listeria, or Erysipelothrix spp., that requires further investigation to establish the relationship with endocarditis, or the blood culture may be uninformative despite a supportive clinical evaluation.

 

[gregjohnsondsm]

Just returned from the doctors. The next scheduled test or an MRI of the head and an echocardiogram. We are also setting up an appointment with the infectious disease doctors. My cardiologist said that the blood culture test would typically result in a positive growth within 24 hours do to the aggressive nature of the endocarditis bacteria. That is if the bacteria came from the surgical procedure. But this is not always the case. He said they read the growth cultures for five days reporting any positive growth as they find it. Also he said that a positive finding in the growth cultures does not necessarily mean it is endocarditis. So I'm still unclear exactly how they determine that one has endocarditis. This is something I'm going to directly ask the infectious disease Dr. It's funny that my cardiologist basically refused to do an echocardiogram but my GP and the ER doctor both suggested the test and my GP actually had to schedule it. I've been stuck 11 times in two days. And I'm sure the infectious disease doctor will want their own set of vials.

 

[pellicle]

Hi

Just returned from the doctors. The next scheduled test or an MRI of the head and an echocardiogram. We are also setting up an appointment with the infectious disease doctors.

Great news.

My cardiologist said that the blood culture test would typically result in a positive growth within 24 hours do to the aggressive nature of the endocarditis bacteria. That is if the bacteria came from the surgical procedure. But this is not always the case. He said they read the growth cultures for five days reporting any positive growth as they find it. Also he said that a positive finding in the growth cultures does not necessarily mean it is endocarditis. So I'm still unclear exactly how they determine that one has endocarditis.

Well like you have said, by taking a cross section of evidences and see if they point to that. Just like triangulation of compas bearings on a map. That your bacteria is not aggressive is a good thing, even if it makes diagnosis slower.

Sounds like you are moving in the right direction and are finally in good hands.

Best wishes

 

[gregjohnsondsm]

Pellicles article links in the message a few above do address the methods of diagnosis of endocarditis very well. I'm glad I read them before visiting the infectious disease doctor. Now I need to print them and study them.

 

[ejc61]

Good luck with your ID Dr.!

 

[ejc61]

Just returned from the doctors. The next scheduled test or an MRI of the head and an echocardiogram. We are also setting up an appointment with the infectious disease doctors. My cardiologist said that the blood culture test would typically result in a positive growth within 24 hours do to the aggressive nature of the endocarditis bacteria. That is if the bacteria came from the surgical procedure. But this is not always the case. He said they read the growth cultures for five days reporting any positive growth as they find it. Also he said that a positive finding in the growth cultures does not necessarily mean it is endocarditis. So I'm still unclear exactly how they determine that one has endocarditis. This is something I'm going to directly ask the infectious disease Dr. It's funny that my cardiologist basically refused to do an echocardiogram but my GP and the ER doctor both suggested the test and my GP actually had to schedule it. I've been stuck 11 times in two days. And I'm sure the infectious disease doctor will want their own set of vials.

I think the echo and maybe a TEE will determine if endocarditis. Your cardiologist and ID doctor will work close together. I'm a bit surprised that your cardiologist wanted to put off an echo.
My wife is a nurse and feels if the headache still exists today, go back to ER and tell them you had a blood culture done yesterday. They should have the preliminary culture report.
Have they considered admitting you for maybe a day for observation so that they can do all this testing quickly versus scheduling in the next several days?