As someone who had undiagnosed endocarditis for 2+ months, (ultimately resulting in aortic valve +aorta replacement and a patch on my heart wall) I really wish my Dr. had been this guy. I always feel like I want to tell the medical world my story so they can learn from me!
@@rumit9946 Is there anything in particular you’d like to know? The whole story is a little long, but I’m happy to share if you want to know the whole deal!
@@rumit9946 I was a very fit, athletic 48 year old when this happened…My initial symptoms came on quite suddenly…while walking my dog, I suddenly had a pretty severe headache that felt somewhat like a sinus headache (a peculiar “sloshy” feeling in my forehead). Upon returning home, I sat down for a nap, and upon awakening thought, “Well, I guess I have the flu”. Body aches, fever, headache…all the “normal” flu stuff. This went on for a week or two, until one weekend (when things felt particularly bad) I went to a local clinic (my primary care Dr wasn’t available on weekends) where I was diagnosed with a sinus infection and given an antibiotic. This helped a bit, but not much, so two weekends later I went back and was given another antibiotic to try. This also helped a bit, but again, two weeks later I went back (this time to my primary Dr) who said, “We can try another antibiotic, but I don’t think this is a sinus infection”. And, due to the persistent headache (it had been a permanent complaint for about a month and a half at this point) he sent me for an MRI. During these weeks, in addition to the headache, I had noticed a decline in coordination, balance and strength, severe night sweats and felt tired all the time. And, as things progressed, I started to feel a strange sensation in my chest. When the MRI came back, my Dr said there were some “anomalies” of concern, and I should go to the emergency room! The emergency room admitted me to the neurology dept., since my symptoms all seemed to point in that direction. It took many scans and tests (and 4-5 days) for neurology to finally realize that this was not a neurological problem, it was a heart problem. A TEE is what finally allowed the proper diagnosis. Looking back, it is somewhat frustrating that it took so long…my primary care Dr knew I had a bicuspid aortic valve and had passed along to the hospital his suspicion of endocarditis, but I guess the hospital either didn’t get that info or wanted to eliminate other possibilities first. And, unfortunately, at no point in the past had anyone impressed upon me (living with a bicuspid valve) what the symptoms and implications of endocarditis were. The neurological problems were a result of “vegetation” from my infected heart breaking off, getting into my bloodstream and lodging in my brain, causing “mini strokes”, and due to the antibiotics that I was given for my “sinus infection” the infectious disease doctors had a hard time nailing down the pathogen…I don’t fully understand the technicalities of this, but I know it made the diagnosis more difficult. Now, knowing MUCH more about endocarditis, it is somewhat frustrating that it wasn’t the hospitals initial suspicion. But, it has all worked out for the best…after a year of recovery, I got back to the high level of fitness and activity I was used to! I hoped this helped you…let me know if you have more questions. I would be honored to help someone learn from my experience!
2015 I was diagnosed with Wegner's Disease. Full kidney failure began dialysis and started Cytoxan with Prednisone. November 2019 I was scheduled for a living donor transplant. In September I experienced 2 back to back seizures for the first time. I was released a few days later and told I had low sodium. Three days of being home and I began running a high fever. I returned to the ER and was told I had Endocrinitis. They started me on Vancomycin for 6 weeks hoping to rid the infection and still perform the transplant as scheduled. I have never used any type of illegal drug or taken prescription medication without being under the care of a doctor. Most everything I see focuses on patients with a history of IV drug use as well as other history that doesn't relate to me.
A friend is in the hospital with this. IV user, strep throat, very sick. So, they are putting her on 6 weeks of antibiotics .... When is surgery usually done ?
Post covid or what they call them long haulers is causing an autoimmune of low inflammatory markers and racing heart and many other neurological symptoms and many times pots and arrythmia’s only pericarditis or myocarditis are detected and the doctors are not treating non infective endocarditis although many of the cases are showing high levels of d dimer with very tough arrythmia’s the doctors must be aware of the non infective endocarditis before the valve prolapse.. why the doctors are only aware after the valves are destroyes or life threating embolism is happening.. why not treating people with those sudden symptoms and high NLR as if we’re treating myocaditis or pericarditis with colchicine or steroids to protect the patient from further complications
Very informative, and what a great realistic doctor this gentleman is, Bravo
Great talk
As someone who had undiagnosed endocarditis for 2+ months, (ultimately resulting in aortic valve +aorta replacement and a patch on my heart wall) I really wish my Dr. had been this guy. I always feel like I want to tell the medical world my story so they can learn from me!
please share your story
@@rumit9946 Is there anything in particular you’d like to know? The whole story is a little long, but I’m happy to share if you want to know the whole deal!
@@johns3106 I'm interested to learn what your initial symptoms were and what was it about your presentation that caused a delay or misdiagnosis.
@@rumit9946 I was a very fit, athletic 48 year old when this happened…My initial symptoms came on quite suddenly…while walking my dog, I suddenly had a pretty severe headache that felt somewhat like a sinus headache (a peculiar “sloshy” feeling in my forehead). Upon returning home, I sat down for a nap, and upon awakening thought, “Well, I guess I have the flu”. Body aches, fever, headache…all the “normal” flu stuff. This went on for a week or two, until one weekend (when things felt particularly bad) I went to a local clinic (my primary care Dr wasn’t available on weekends) where I was diagnosed with a sinus infection and given an antibiotic. This helped a bit, but not much, so two weekends later I went back and was given another antibiotic to try. This also helped a bit, but again, two weeks later I went back (this time to my primary Dr) who said, “We can try another antibiotic, but I don’t think this is a sinus infection”. And, due to the persistent headache (it had been a permanent complaint for about a month and a half at this point) he sent me for an MRI. During these weeks, in addition to the headache, I had noticed a decline in coordination, balance and strength, severe night sweats and felt tired all the time. And, as things progressed, I started to feel a strange sensation in my chest. When the MRI came back, my Dr said there were some “anomalies” of concern, and I should go to the emergency room! The emergency room admitted me to the neurology dept., since my symptoms all seemed to point in that direction. It took many scans and tests (and 4-5 days) for neurology to finally realize that this was not a neurological problem, it was a heart problem. A TEE is what finally allowed the proper diagnosis. Looking back, it is somewhat frustrating that it took so long…my primary care Dr knew I had a bicuspid aortic valve and had passed along to the hospital his suspicion of endocarditis, but I guess the hospital either didn’t get that info or wanted to eliminate other possibilities first. And, unfortunately, at no point in the past had anyone impressed upon me (living with a bicuspid valve) what the symptoms and implications of endocarditis were. The neurological problems were a result of “vegetation” from my infected heart breaking off, getting into my bloodstream and lodging in my brain, causing “mini strokes”, and due to the antibiotics that I was given for my “sinus infection” the infectious disease doctors had a hard time nailing down the pathogen…I don’t fully understand the technicalities of this, but I know it made the diagnosis more difficult. Now, knowing MUCH more about endocarditis, it is somewhat frustrating that it wasn’t the hospitals initial suspicion. But, it has all worked out for the best…after a year of recovery, I got back to the high level of fitness and activity I was used to! I hoped this helped you…let me know if you have more questions. I would be honored to help someone learn from my experience!
Very informative; wish we could see the slides too
Don’t forget the patient that has a recent pacemaker change recently - the infection tracks down the leads. The pacemaker site might look clean
2015 I was diagnosed with Wegner's Disease. Full kidney failure began dialysis and started Cytoxan with Prednisone. November 2019 I was scheduled for a living donor transplant. In September I experienced 2 back to back seizures for the first time. I was released a few days later and told I had low sodium. Three days of being home and I began running a high fever. I returned to the ER and was told I had Endocrinitis. They started me on Vancomycin for 6 weeks hoping to rid the infection and still perform the transplant as scheduled. I have never used any type of illegal drug or taken prescription medication without being under the care of a doctor. Most everything I see focuses on patients with a history of IV drug use as well as other history that doesn't relate to me.
Did you have a BAV (bicuspid aortic valve)? That's what I had and led to Infective endocarditis.
A friend is in the hospital with this. IV user, strep throat, very sick. So, they are putting her on 6 weeks of antibiotics .... When is surgery usually done ?
Post covid or what they call them long haulers is causing an autoimmune of low inflammatory markers and racing heart and many other neurological symptoms and many times pots and arrythmia’s only pericarditis or myocarditis are detected and the doctors are not treating non infective endocarditis although many of the cases are showing high levels of d dimer with very tough arrythmia’s the doctors must be aware of the non infective endocarditis before the valve prolapse.. why the doctors are only aware after the valves are destroyes or life threating embolism is happening.. why not treating people with those sudden symptoms and high NLR as if we’re treating myocaditis or pericarditis with colchicine or steroids to protect the patient from further complications
What is the name of this Dr....he is very informative and an amazing speaker.
My husband is suffering with this atm after a dental appointment
How did he make out?