Heart valves inssufficiency moderate & ventricular left/right hypertrophia

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Hey
I had 2015 my first severe ME year, with herpes 6 reactivation (was not treated by doctors) ,lots of infections wich took me to the ER here in Germany (where also not taken serious) and the blood tests showed high troponin where i was showing all signs of a myocarditis , also in EKG ( t negative waves, arrithmia, etc ) .

But they didnt think about doing a heartmuscle biopsy in this moment .

Now i have checked with a new doctor my heart echo from last year, where stays :
ventricular right and left hypertrophia ( i google it and this should be cardiomyopathy )
heart valves inssufficiency level 2 ( there are mild, moderate and severe , where you need valve replacement)

Before 2015 my heart was PERFECT
I urgently need a heartmuscle biopsy because i am 100 % sure i have a silent chronic myocarditis wich its producing this problems.

I live in Germany and it will be very dificult to get it , i know a few who have get it but they have contacts in the health care system. They have ME and no signs of heart disease- but the biopsy showed a
myocarditis.

What should i do now ? i read the life expectation its 8 years .
I am pretty sure viruses and bacteria caused this , and they are still causing it.
I stil have hope to get better and maybe do a little gymnastic, to preserve a little my muscles . is this heart problem going to kill me ?
does anybody have here a similar experience?
lots of health and hope for you all.....from Germany
 
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Pyrrhus

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It is very common for ME patients to report temporary pericarditis/myocarditis, without any obvious heart problems. This is not necessarily a serious condition.

Although the pericarditis/myocarditis is likely viral, it may not make sense to get a heart biopsy just to prove it. Firstly, a heart biopsy is quite invasive and may leave scarring. Secondly, the biopsy may not lead to any new therapy, even if you successfully prove viral inflammation.

Hope this helps.
 

Lisa108

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There is a lab in Berlin which is specialized on chronic inflammation / virusinfection of the heart. Working with the hhv6 foundation.
Link to the IKDT here.
I emailed them once and had one of the founders reply extensively a few days later. Maybe they can advise you on a doc or clinic to go to?
 

Gingergrrl

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I live in Germany and it will be very dificult to get it , i know a few who have get it but they have contacts in the health care system.
I was told by my former Cardio (a few years ago) that Germany is really the only country in the world that routinely does heart biopsies. So you are in the right place @Berzerkerina to have one done if needed and I know of a few American patients who have flown to Germany to get one. My understanding (which could be wrong) is that if you have certain viruses in the heart, like Parvo, than the treatment is IVIG. Best wishes to you and I hope that you find the right diagnostics and treatment.

I wish you the best of luck. I am in a similar situation but am in the US and cannot get to Dr. Tschope.
It is great to hear from you @TenuousGrip and I am hoping that you are okay. I can't remember now if you had the heart biopsy (or still waiting to find out if you can get one)?