I posted a message on April 18 (from Lance) under
the heading "B.
EndocarditisEndocarditis
Infectious endocarditis
Infective 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
vancomycinVancomycin
Vancomycin hydrochloride which
eliminated my
feversAllergic rhinitis
Coccidioidomycosis
Febrile seizures
Fever
Fever blister
Fever blisters and canker sores
Herpes labialis (oral herpes simplex)
Histoplasmosis
Malaria
Rheumatic fever
Scarlet fever, though some of my
chillsChills remained.
Additionally, I had
swollenSwollen glands/sore lymph
nodesLymph node biopsy
Swollen glands
Swollen lymph nodes in the groin
Swollen lymph nodes under arm (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.