Sub-acute Bacterial Endocarditis (SBE)

[Rick]

My MDs suspect that the damage to my aortic valve was caused by sub-acute bacterial endocarditis. I had two months of intermittent fever, profuse sweats and extreme fatigue from Sept 2007 until December 2007. However, my MDs are not agreed on this diagnosis. Whether I get placed on an extremely strong, long-term and potentially dangerous antibiotic protocol depends on this. Given conflicting MD opinions, it may be a judgement call (and I may have to make it).

Can anyone share their own stories and experiences with SBE? Symptoms? How was it diagnosed? Did you have recurring or chronic infections or just one? Thank you so much for sharing.

Rick

 

[Natanni]

What testing have you had?

Bacterial endocarditis is nothing to mess around with, as it can cause vegatations of the valve which can break loose and lodge in a blood vessel, causing strokes and death. My husband was sick for 6 weeks with low grade fevers, night sweats, blurred vision and roaming muscle pains. It took several weeks before serum blood cultures were drawn and he was finally diagnosed. He had 3 Trans Esophogeal Echos (TEEs) to monitor possible vegetations on his valve. None were seen, however once the valve was removed he did infact have vegetations on his valve (after 8 weeks of Rochephin IV therapy). My husband is VERY lucky the vegetations didn't break off. We have one friend who didn't get diagnosed quickly, and suffered a stroke. My husband was never given "acute" or "sub acute" diagnosis. What kind of long term/dangerous antibiotics are being proposed?

 

[Rick]

Further explanation

Further explanation

The episode of illness was actually from September 2007 until Decembver 2007. Since, I have had regular echos, and a TEE which was stopped midaway because my bp lowered too much. The regular echos showed signficant deterioration of the aortic valve from prior echos.(prior to this, my echos said I had mild aortic regurgitation only, and now they are taking about an operation). No vegetations have been found.

Bloodwork in March 2008 found positive results for Chlamydia Pneumonia (CPN)antibodies, very very high results. CPN does not appear in blood cultures -- it is one of those rare ones which do not appear. Blood cultures were negative. This is all months after the illness. MD placed me on doxycycline 100mg twice a day for 6 months.

However, I have restarted having extreme fatigue again as of 10 days ago and had fever a few days.

CPN experts propose that the bacteria is intracellular and requires Clarythromycin, Rifabutin,and other antibiotics and medicines which are somewhat toxic. The regiment is followed for 2 years or so and you check your liver monthly to make sure you are not damaging it. I have a tough decision.

 

[Jeeb1]

Hi--regarding SBE. I got it from having two wisdom teeth removed. The holes did not close and infection entered the blood stream that way. I had night sweats, severe respiratory infection, and painful fingertips and toes which turned out to be small blood clots. It took months to get diagnosed--in fact it was diagnosed after the fact. I happened to be at the doctor for something else and he noticed a murmur. It turned out that my mitral valve was damaged from the infection. I was 18 at the time. I have since had two replacements--one at age 34 and one last June at age 44.

 

[zipper2]

Hi Rick,
I was admitted 2 years ago at age 45 witha history of several weeks
of fever and sweats,i was admitted finally after drs trying to figure out
what was wrong,then blood cultures found to have staphylococcus
hominis bacteremia and influenza. Ihad a avr done in 1992 at age 31 so as i needed a tranfer 8 hrs. away to my cardiologist a specialist i didnot know was called to take over my health issue here,i was put on telemetry in icu.
and started immediately on vancomycin and gentymicin i.v.'s waiting for a transfer i couldn't understand why it was taking so long,then this specialist came to see me and says Mrs. ____ the Dr your being transfered to dosent know you of course he wouldnt that wasnot my last name,this dr had spelled and pronounced my last name wrong,well you wanna see someone hit the ceiling the telemetry wires come off and so did I,long story short i was transfered that very same day to Calgary alta. immediately i was so ill and the iv's in my arms werenot staying in and i was sensitive to the iv drug vancomycin,my pulse was jumping out of my neck out of my head out of anywhere it could push out of and this concerned them alot.I was put on 2 medications lanoxin and metoprolol immediately,then within time there as i have also a bad unreplaced mitral valve along with the aortic they gave me at different times 3 esophogcal echos and were very concerned about my spleen and i needed to go 6 individual times for tests on my spleen,finally they were convinced it was very inlarged,but were going to leave it alone and keep checking on it.As i continued the iv drugs i felt like my spleen was going to rip open,and they were aware of this too.The echos demonstrated
no evidence on the aortic mechanical or the mitral other thanrestriction with severe mitral regurgitation,i was seen by infectious disease team whom suggested another 8 weeks of the iv antibiotics which i did at home through home care,they believed it was a late prosthetic valve endocarditas it may be adequately treated with medical management,specifically iv antibiotics.
In 6 months i returned at their request to redo an echo of ongoing bacteria
despite the antibiotic therapy and i also was redoing blood cultures throughout the 6 month period i returned to them,they felt at this time upon return thatno indication for a redo surgery was needed. So i really had a total of 11 weeks iv antibiotic therapy and now today my arms ache in pain some days from the needles and a pick line was requested as i would litterally cry from the iv doses twice a day the vancomycin going in would burn and they had to hot cloth the base of iv needle just to keep it in my arm...sometimes the'd have to replace the iv needle 4 times aday. As for the pick line in my neck they wouldnt allow it for fear of more bacteria entering my system,so i suffered along time with pain of this sort.So it was diagnosed th bacteria in a blood culture........how did i get it has baffled the infectious team and me as they questioned dental work,i had none done,i had no surgery ,the specalists and drs are all baffled as to where i picked it up,i work in a rcmp detach.
in the cellblock area could have there picked it up,coula picked it up at Walmart store,we dont know!!!!! But i do know i was off work for 8 months and it still bothers me the spleen,i can feel every hole that was ever made in my arms for ivs the arms ache like tooth aches sometimes and i find my ammune system was drained out somemore over this and i can catch everything and anything.....FAST its never reoccured but while i went through the fever etc i felt very much like when i had rhuematic fever at age 17 couldnt get up fever peeled my skin this endocarditis brough back the symptoms of rhuematic fever........ITS NOT FUN!!!!!!!!!!!!!!!!!



zipper2

 

[Dina]

Any type of endocarditis can be dangerous.
Have you lost weight,lost your appetite,have an intermittent fever,and a fever which can go up to 106 if not treated.All it takes is an echocardiogram
to diagnose this and once they see any vegetation , they need to treat
you with antibiotics right away. It is important to fnd the antibiotic that the
bacteria is sensitive to but this can take 2-3 days to culture and 1 more day
for the sensitivity test. So sometimes they give a wide-spectrum antibiotic
which kills a very broad range of endo-related bacteria like staph aureus,staph
epidermis and streptococcus.Please dont wait too long before taking antibiotics. I am not sure what you mean by dangerous antibiotics, but it
is most assuredly dangerous to wait or to not take any Rx. I had endo. a few times and was diagnosed late , this caused most of my tricuspid valve to be eaten away , so I dont want anyone to repeat my mistake.
Hope all goes Well,

 

[Bryan B]

My MDs suspect that the damage to my aortic valve was caused by sub-acute bacterial endocarditis. I had two months of intermittent fever, profuse sweats and extreme fatigue from Sept 2007 until December 2007. However, my MDs are not agreed on this diagnosis. Whether I get placed on an extremely strong, long-term and potentially dangerous antibiotic protocol depends on this. Given conflicting MD opinions, it may be a judgement call (and I may have to make it).

Can anyone share their own stories and experiences with SBE? Symptoms? How was it diagnosed? Did you have recurring or chronic infections or just one? Thank you so much for sharing.

Rick

Rick,

I'll try to be as concise as possible although that's not my strong suit.

First of all I was born with a large VSD that had gotten smaller over the years but never closed. I contracted SBE in 2003 after a long bout with bronchitis. It took about 4 months to diagnose. My symptoms progressed from a low grade fever (usually in the evening) and mild night sweats to extreme fatigue, constant low grade fever, severe soaking night sweats, swollen feet and hands, and a dull ache between my shoulder blades. I had been on several different antibiotics and steroids but every time I finished taking them the symptoms would come back. They finally took blood cultures that came back positive for a strain of strep virus within 24 hours. Two days later I had an echo and they were able to detect vegetations on my aortic valve. I underwent 7 weeks of IV antibiotic therapy (Rocephin 2gm daily) and the echo taken after I finished the IV antibiotics showed that the vegetations had cleared up. When I followed up with a cardiologist he recommended surgery for two reasons. One to close my VSD which made me more vunerable to SBE, and two to replace my valve which was leaking badly due to the damage done to the aortic valve leaflets by the vegetations. I had my VSD repaired and had a Ross Procedure 3 months after I finished my IV antibiotics. There was never a discussion about long-term antibiotic therapy instead of valve replacement as the damage from the vegetations had caused my valve regurgitation to progress from moderate to moderate-severe. IMO once you have had SBE, unless you have your valve replaced you will be at a higher risk of contracting it again...especially if you had any vegetations that left irregularities on your valve leaflets. I'm not a doctor so I can't tell you if long-term antibiotic therapy will prevent or prolong you from needing your valve replaced. In my case as my VSD became smaller it started causing suction on my aortic valve causing one of the leaflets to prolapse. Because of this abnormality it made me even more suseptible to SBE and they felt if they left my native valve in place it would just be a matter of time before SBE set in again. I can tell you that over 4 years after my surgery I have not contracted SBE again. Part of the reason I chose the Ross Procedure is that they use your own pulmonary valve to replace the aortic valve, and they use a human donor homograft valve to replace the pulmonary valve that is now acting as your aortic valve. Both of these valves are less suseptible to SBE than a prosthetic valve although there are no guarantees. I can only guess that it's possible that the doctors feel they can save your own valve by using long-term antibiotics. If they didn't I would think they would go ahead and replace your valve as long as they thought there were no vegetatons present. Replacing a valve in a patient with active SBE with vegetations is complicated and the risk factor goes up considerably.

And there you have my concise response to your questions. I told you that being concise isn't my strong suit.

 

[Petros]

Endocarditis

Endocarditis

Here is my story:
It all started in last June with fever and fatigue.
After a short physican examination the doctor said that the problem was with my sore throat so I was put on antibiotics for three days. Fever has gone away but after a week I woke up during the night with high fever and extreme fatigue. The next day I was in a private clinic to continue a "coctail" of antibiotics but unfortunately for me without any blood cultures in advance. All blood cultures followed showed a different bacteria due to the antibiotics.
For 15days in the clinic fever and sweat were permanent and all those antibiotics did nothing. All MRI's, etc., failed to show anything.
I was fortunate on my decision to leave that clinic and go to The American Heart Institute in Cyprus. These people are really professionals.
I arrived there on a septic shock, a destroyed aortic valve (I had a mild aortic stenosis) and vegetation, etc.
An excellent doctor there did the OHS that took 9hours to finish. He cleaned all vegetation, replaced my aortic valve with a Carbomedics no.21 and did a pericardial patch because there was a hole that was self-sealed by a thrombus!!
I continued antibiotics for a month and a half after my operation.
I am sorry if I can not express myself in good English but my advise is to move fast, do a blood culture prior to any antibiotics and choose a professional that would really consider patients as fellow people.
My main concern now is the possibility of Endocarditis relapse because I am almost certain that if this comes again........
Finally, I was never told who I got this illness nor what was the bacteria that caused all this trouble.
Dear Rick, move fast but start after receiving results from blood cultures and prior to receiving any antibiotics.
All the best,
Petros

 

[Bonzo Dog]

Hello Rick, my first reply was lost due to forum technicalities so here goes version 2 More endocarditis tales:-

It is important to distinguish between Sub Acute Bacterial Endocarditis and Acute Bacterial Endocarditis

SBE is a longer term, ebb and flow, grumbling condition, ABE is an aggressive, quick, knockout blow variety. Nursing and medical staff often wrongly use SBE as a catch all acronym for both strains. This has slipped into common currency and can cause patient confusion. Some replies in this thread seem to concern ABE, not SBE

It would seem you have probably got SBE. The good news, it may be treatable by antibiotics, so no need for surgery. The bad news, accurate diagnosis with blood tests is a problem.

I have experienced both varieties.

In a six week period several bungled pacemaker and lead changes also an haematoma evacuation, led to me feeling ill. Very similar symptoms to yourself, except I also suffered rigors.

A brief hospital in patient, the blood tests were negative. This was in part due to their timing not coinciding with an infection flare up, and to echo Petros posting above, in part due to antibiotics muddying the waters. I was discharged.

At home my fiesty, persistent GP took a series of bloods over a week to ten days. Some came up positive. SBE was diagnosed, so I returned to hospital as an in patient. A TOE (TEE) clearly showed a valve under attack. Then the bummer, ABE was also found in hospital bloods.

So with both streptococcus and staphylococcus running around I became a microbioligists delight. a heady cocktail of antibiotics was pumped in via a Hickman line in the jugular vein. The in situ mechanical valve was replaced with a homograft. Twelve weeks an in patient and home on Christmas Eve.

Rick, I think what you should take from this is, blood culture as a definitive SBE diagnostic tool is flawed. A series of bloods over many days, some coinciding with a flare up are the way. Fingernail blood splints, rigors, night sweating, fatigue should all point the way. Shine a torch through your fingers from underneath. As it is illuminated can you see splints?

Regarding antibiotic reactions. Are your fears real? In these litigenous times drug companies have to flag up all possible side effects. I could be deaf, with knackered kidneys and suffered multiple strokes; I didn't. Your fears may be justified, I'm just asking the Q.

 

[Susan BAV]

This is an interesting thread.

It wonder if there could be a separate forum for endocarditis...

 

[Rick]

SBE specialist request

SBE specialist request

Thank you for your responses. I think I may have SBE, the slow moving ebb and flow kind, not the acute kind. I have fevers intermittently and feel very tired, energy for 4 or 5 hours per day. The local cardiologist who did my echo yesterday told me he did not think my aortic valve naturally progressed in 3 years from a mild regurg to moderate severe regurg in need of replacement. Other than SBE, the other explanation he said is that I was misdiagnosed in past echos and he is trying to get my past echos, which were performed elsewhere. Given my symptoms and the similarities (tiredness, recurring fevers, i did have chills too at first) I think I probable have or have had SBE. I also did have off the charts antibodies to Chlamydia Pneumonia which can cause endocarditis and it is typically blood culture negative, according to literature I have read.


I am currently on oral doxycycline 100mg twice daily and feel exhausted all the time. I also had fevers the week before last, maybe around 101 F.

I think I need to go to the US for a consult/treatment. Flights to the US are only 3 hours from here so not bad (I can relate to the person who travelled for care in Cyprus locally, day to day treatment is fine but more than that is not good and it never ocurred to my GP after 2 months of fever and tiredness and a concomittant valve condition to check for endocarditis).

Does anyone know who or were the top MDs in SBE are in the US? I think probably has to be an infectious disease MD who woudl work in conjunction with a cardiologits. Is there a specific or are there specific MD´s reknowned in this? Any suggestions?

Thank you