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Hi everyone….I'm new to this group. I am looking for others that have Lymphocytic Myocarditis. Anyone out there have this disease?
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Hello. Can you please tell me more about your symptoms and how you were diagnosed with lymphocytic myocarditis. I have had many cardiac symptoms for years that remain a mystery to my doctors. I suspect that all my symptoms started with a myocarditis which has left my heart damaged. I would really appreciate it if you could share your story. Thank you.
Mary, I'm happy to tell you what I know. My diagnosis was finally confirmed through a heart biopsy. I'm 57 years old. Since I was about 40, I've had some strange auto-immune type symptoms that come and go (strange rashes, alopecia, joint pain, extremely swollen joints, etc.). I saw various rheumatologists and dermatologists in Georgia, and was never really diagnosed with any specific disease. One thought Lupus, one thought Sjogrens, but no real diagnoses and treatment was usually steroids. In 2014, I experienced 2 heart attacks within 3 weeks of each other. Had the typical elevated troponins and damage to heart. But when the cardiologist went in to put a stint, he found absolutely no blocked arteries. Mine look great. He's stumped and put me on almost 2000 mg of aspirin a day. At that time, my EF was 50 (low end of normal). I felt better not long after those events, but about a year later (2015), I had bad chest pain again. This time I was diagnosed with heart failure. Again, a few days in the hospital and loads of steroids, and I'm good again. EF is 50. About a year later, just after relocating to the Jacksonville area, I have the chest pain again. Same scenario, but this time they tell me my EF is 25. I get a referral to Mayo and finally started getting some answers. Dr. Cooper (my cardiologist) is the leading authority on myocarditis, and has been a God-send to me. I end up spending 2 weeks in the Mayo hospital with Dr. Cooper and the transplant cardiologists. They did a heart biopsy as part of the transplant approval process, and it was confirmed as lymphocytic myocarditis (which I think basically means that it's myocarditis caused by an auto-immune disease). So the way I understand auto-immune diseases, it's basically your immune system attacking your own body because it thinks there's something wrong. In my case, my immune system attacks my heart and causes inflammation (myocarditis). They also did a heart cath through my neck to get a better EF reading, and it was 19. I guess technically, it doesn't matter which auto-immune disease it is, because you treat the symptoms as they occur. I wore a life vest for about 6 months. I was on the transplant list (status 2) for about 6 months, and on various drugs. I improved enough that they were able to remove me from the transplant list. My EF after a year was back up to 50. Yea!! But a few weeks ago, had the bad chest pain, absolutely no energy, everything was a struggle, etc. Back to the hospital. EF is down to 29 (it was 59 a month prior, so it fell fast). My BNP, which measures heart failure, was in the 300s the previous month, and was now in the mid 900s. SO….now I'm going back to transplant for another consultation, and we'll see where that leads. I'm praying not to need a transplant, but I do know that if I need one, I'm at the best place possible. That's basically what I know about lymphocytic myocarditis and my story. Please let me know if you have any questions. I'm always happy to share, especially if it can help someone.
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@michelecallahan– Wow Michele, what a story you have! You have been through so much and yet I sense a real calmness in the midst of this chaotic journey you are on. The highs & lows of your story are amazing and your attitude seems so encouraging!
I wish you all the best as you continue to persue better health and your life. I will join with you and pray that you do not need a transplant.
Godspeed to you! Jim@thankful
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