I posted a message on April 18 (from Lance) under
the heading "B. Endocarditis: Or Is It:". This is
a late follow-up.
If possible - I request that you read that posting prior to this
as I could not figure out how to move it from the archives.
I was diagnosed with culture negative SBE (and TEE negative)
in early April. I under went 6 weeks of vancomycin which
eliminated my fevers, though some of my chills remained.
Additionally, I had swollen/sore lymph nodes (neck/underarms) before the
diagnosis and continue to have them today. They are unusual,
as the soreness and swelling tends to move around in my
lymph system - it is not consistent. The swelling is not substantially
large either. I also experience brief pain/soreness in my neck muscles,
lower back and right side.
As advised in my last posting, I asked the doctors to investigate
my lymph nodes further . They said they saw no reason to. I also
asked them to check for auto-immune disorders. They did check for
a few but the only 3 I can remember are Lupus, Rh. Arthritis, and
my Cortisol level (Adrenal gland). Remember - out in the real
world we are dealing with HMO's day to day. We don't call the
shots - they do.
I was told wait until I got off Vancomycin and my problems will go away.
I've been off 4 weeks and they havent gotten any better. I now
have the same type of lymph problems in my groin and feel a dull
ache in my testicles. I have also had burning eyes throughout
the entire experience and recently (last week) have had a sore
throat. I saw a ENT for the throat but he didn't suspect much
of a problem.
My infectious disease doctor has run numerous CBC, Chemistries,
and Sedrates. All come back normal. He even recently ran
a few virus titers (Epstein-Barr, CMV, Lymes) - All negative
except a tested positive for having epstein-barr at some point in my life.
He basically says "I Have no infections whatsoever at this point".
My cardiologist ran a new echo (which hasn't been run in 7-8 weeks)
plus a thalium stress test. After waiting three weeks - he now
tells me I have some rather moderate, possibly severe damage to
my mitral valve which may require replacement. I have two jets
that are regurgitating (before the bacterial endocarditis, I only
had minor regurgitation).
I understand that the SBE could have caused this additional damage,
but now my cardiologist speculated about "marantic" endocarditis
or non-bacterial thrombotic endocarditis. He wants to biopsy
a lymph node (which I asked them to do 6 weeks ago). He also
wants to run another TEE.
I understand that this type of endocarditis is often a sign of
a terminal illness, often cancer, particularly pancreatic.
I was floored that after all this time that they may now suspect
a non-bacterial source and wasted 3 months treating me for something
I probably never had.
Is marantic endocarditis something they could have missed 3 months
ago by confusing the symptoms with bacterial endocarditis?
I can't seem to find any symptons for the onset of marantic
endocarditis? Are there any? Or does it manifest after the onset
of the primary illness (like cancer).
I know this is a heart forum - but is it posssible to have a
serious or terminal type of cancer with the negative CBC's I
get plus the good sedrates (10).
Believe it or not, I find myself "pulling" for only having
heart problems - as rediculous as that sounds.
Anxious and Very Confused.
Lance.
_
Dear Lance, thank you for your question. I apologize for the delay in answering
your question, but we've been very busy answering questions in this forum and
I wanted to be sure you received an adequate response. You have had a complicated
and difficult illness which has certainly been made worse by the thought that
you may have cancer. I've done some research on endocarditis, so I hope to help
you with my response. Culture-negative endocarditis is difficult to diagnose,
difficult to treat, and hard to know if it's eliminated. Endocarditis is diagnosed
by blood cultures, echocardiography, and clinical signs and symptoms. With a
negative TEE and blood cultures in April, you still could have had endocarditis
and it sounds like you've responded to the vancomycin (your fevers are gone).
However, your lymph node swelling and tenderness is concerning. There are rare
infectious causes of endocarditis like Q fever, Chlamydia psittaci, fastidious
organisms (Actinobacillus, brucella, cardiobacterium), and fungi that are hard
to culture and can turn out to be the cause of "culture negative endocarditis."
One of these organisms could be the original cause of your endocarditis or you
could have received antibiotics before the cultures were taken which could have
suppressed bacterial growth to render the cultures negative. The original TEE
was reported to be negative, but you could have had small vegetations that could
not be imaged when the TEE was done. Since your echo now shows moderate to
severe mitral regurgitation, I suspect that you did have mitral valve vegetations
at some point that damaged the valve leaflets to cause more regurgitation. A
repeat TEE would certainly help to clear that up. As for marantic or non-bacterial
thrombotic endocarditis, that certainly could be possible, but until more data is available,
I don't presume that you have cancer. Marantic endocarditis occurs with
connective-tissue disorders like lupus, renal failure, and cancer (most commonly
lung, pancreatic, or gastric). In this disorder, small thrombi form on the valve
leaflets where the valves are damaged (as in mitral regurgitation). Bacteria
do not colonize these thrombi, but there is still potential for the thrombi to
embolize to the rest of the body. However, this is a diagnosis of exclusion after
all possible infectious causes have been ruled-out. Also, it is unlikely that the
valve leaflets would be further damaged in marantic endocarditis since bacteria are
not present to "chew up" the valve leaflets. Finally, the symptoms of marantic
endocarditis are often insidious and non-specific so I doubt you overlooked anything
back in April. However, the treatment you received was not a "waste" and is the
standard treatment anyone else with your profile would have received. Your lymph
node swelling and enlargementcould be the sign of a chronic infection that has
not been fully treated or a connective tissue disorder (unlikely with the normal
sed rate). Thus, I agreethat a lymph node biopsy and a repeat TEE should be the
next step. Until the results of the biopsy and other tests are back, cancer
cannot be ruled-out. However, as I previously mentioned, I think cancer is
unlikely. I hope you find this information useful and please write back with
any further questions or with the results of your repeat TEE and lymph node
biopsy.
Information provided in the heart forum is for general purposes only. Specific
diagnoses and therapies can only be provided by your physician.