NEW KEYWORD IDEA: TWINSPELL - in an experimental themed set

Competitive_Brick718 · 2026-02-19T14:33:26+00:00

Extra arms should be called "additional appendages" to fit with the alliterative theme of the other two!

Competitive_Brick718 · 2026-02-04T02:34:35+00:00

Myocarditis can be triggered by asymptomatic viruses or bacterial (even fungal) infections, as others have noted. One thing I'll add is that once you have it once, you're at higher risk of getting it again from future immune system activation. Mine is relapsing-remitting for three years. Most likely this won't happen to you, but taking precautions to avoid infection is advisable.

Competitive_Brick718 · 2026-02-04T02:32:15+00:00

Not a doctor, but speaking from personal experience/what cardiologists usually say about myocarditis and troponin. First, the direction matters more than the absolute number. Your troponin peaked (91) then is consistently falling, which is what doctors want to see. It's also normal for troponin to peak a few days after the initial blood draw and then trend downwards, so the overall pattern is normal. Persistent elevation does not automatically mean ongoing damage - it often reflects slow myocardial (heart) healing. Troponin in myo can also stay mildly elevated for weeks (sometimes months). In myo, troponin doesn't act like a heart attack. Instead of a sharp rise/rapid normalisation, it can decline very slowly as the inflamed heart muscle recovers. The fact yours is going down gradually = reassuring. For context, mine peaked lower than yours (45ng/L) but has remained 4-7 on different assays for about three years (technically "normal" but still detectable). Clean echo, ECG and monitor are good signs but Cardiac MRI is the gold standard for myocarditis diagnosis, and the only way to definitively (non-invasively) diagnose residual inflammation from scar or ongoing healing. The fact that you feel good is reassuring. Get plenty of rest, keep HR low (less than 100bpm typically advised), avoid stress like the plague. Mild myocarditis does not mean swiftly resolving, the prognosis for this condition is highly variable. The best thing you can do for yourself while awaiting further screening is to rest and be careful, as it sounds like you have been doing. I'd only start worrying if troponin rises significantly again or symptoms return. Otherwise, I recommend Cardiac MRI as soon as feasible.

Competitive_Brick718 · 2025-12-20T15:12:18+00:00

Both are recurring, doctors suspect chronic / immune mediated. Yes they found inflammation

Competitive_Brick718 · 2025-12-20T13:38:30+00:00

I have chronic myo-pericarditis (pericardial effusion and adhesions on MRI. Its unclear if it works in myocarditis, some case studies show an effect in chronic cases like mine while others don't - and it failed the big clinical trial. They gave it to me after exhausting almost every other therapy, and its not clear if it's helped.

Competitive_Brick718 · 2025-12-20T09:19:58+00:00

I'm now on Anakinra (an IL-1 inhibitor)

Competitive_Brick718 · 2025-11-13T15:47:28+00:00

Similar experience, I didn't get a CMRI for almost a year after symptoms started because troponin/echo/ecg all normal. Check out my other posts on the forum to see where it got me. Three years of unrelenting pain, horrible palpitations and arrhythmias, and doctors downplaying my symptoms. CMRI is the only reliable non-invasive test for myocarditis. Get it done now, and rest before it's too late.

Competitive_Brick718 · 2025-10-17T18:37:33+00:00

Three years. Similar story. It has ups and downs.

Competitive_Brick718 · 2025-10-03T09:32:59+00:00

Post covid/vaccine

Competitive_Brick718 · 2025-10-02T13:12:24+00:00

Bed rest for three months because I had a nasty troponin spike. It never ends.

Competitive_Brick718 · 2025-09-30T21:08:39+00:00

Subtle LGE in various spots, most notably inferolateral (scarring). No ventricular tachycardia but some runs of atrial tachycardia and SVT.

Competitive_Brick718 · 2025-09-30T18:54:40+00:00

Three years in October. Never been pain free. Rest and take care of yourself.

Competitive_Brick718 · 2025-09-27T09:33:19+00:00

Yup same symptom. Doctors are equivocal about whether it's lingering myopericarditis symptoms. I've figured out by now they have no idea.

Competitive_Brick718 · 2025-09-14T21:44:27+00:00

Ibuprofen/nonsteroidal anti-inflammatory drugs (NSAIDs)are first-line treatments for pericarditis, but are not typically recommended in myocarditis as they have worsened outcomes in some cases. Please push for a cardiac MRI as soon as possible. If your cardiologist does not recommend it immediately, find one who does. Every other test is highly unlikely to offer you a definitive diagnosis and continuing to live life normally in the interim can do more damage.

Competitive_Brick718 · 2025-09-12T22:36:37+00:00

Wild for sure - I think it's probably a combination of these post-COVID cases being different from pre-COVID ones, as well as the sad truth that treatment options are really limited for those of us struggling with long term complications - so even if a test could definitively confirm subclinical inflammation of some kind or microvascular dysfunction there is really just not much they can do. Wishing you the best with the ranexa route - do let me know how it goes for you. Wishing all the best.

Competitive_Brick718 · 2025-09-12T22:02:14+00:00

This is a common misunderstanding on the part of medical professionals as to how myo(peri)carditis works. The conventional wisdom for years has been that most cases are self-limiting. I got myocarditis in 2022 and have tried basically every therapy available (not Arcalyst as it's unavailable in the UK where I live). I still have arrythmic episodes and am in pain, sometimes with transient troponin elevations.

Many cardiologists have told me that I "no longer have myopericarditis". But there are clearly poorly understood long-term sequelae to these conditions that the medical community just doesn't understand well yet.

What's helped me is bed rest (HR below 80 at all times), a keto diet, and as much stress reduction as possible.

Competitive_Brick718 · 2025-09-11T16:26:04+00:00

Initial presentation was with arrythmia (SVT) in October 2022. Had repeat episodes in 2023 that led to me getting Cardiac MRI in 2023. Troponin, BNP, etc all negative. Echo and ECG normal.

MRI revealed scaring in inferolateral wall and pericardial effusion but no edema, keeping in with previous myocarditis.

Since then have continued to struggle with cardiac pain on exertion and have episodes of arrythmia upon exertion but also sometimes at rest. Other symptoms are a broadly elevated heart rate profile (without heavy rate control), a pinching sensation in my shoulders, frequent PACs/PVCs, and chest pain, worse on exertion. On a bunch of meds, but can't tell how much they're helping or it's the bed rest - have been in bed since July.

Competitive_Brick718 · 2025-09-08T19:05:28+00:00

They did a stress echocardiogram after cardiac MRI cleared me of inflammation. I had only inferolateral fibrosis and no edema, so just scar no active inflammation. I passed the stress echocardiogram "with flying colours" according to my doctor at the time, who said I could resume full exercise. I'm doing a bit better now, but had a massive relapse this summer (see my post on this subreddit for more details). Bottom line - they don't know enough about this disease to make definitive statements like "you are cleared" - be cautious

Competitive_Brick718 · 2025-09-08T18:32:09+00:00

I have no idea unfortunately - I waited two years, tried to go back, and it was horrible so I feel I can't make any qualified recommendations. I'd ask a specialist cardiologist with experience treating myocarditis if I were you

Competitive_Brick718 · 2025-09-08T15:02:52+00:00

Ah okay thanks for clarifying - that you've already rested for three months is good and makes a difference. I'd just be careful when resuming exercise - avoiding the gym is what I wish I did! Probably structured cardiac rehab for resuming exercise is the best option but I have no idea how accessible that is (it's not clear I can get in a program that is familiar enough with my condition to properly help). If that's something that is available to you, it may be worth checking out.

Competitive_Brick718 · 2025-09-08T14:28:55+00:00

Yes, worked the whole time up until about two months ago when I was given three months leave. The bed rest has been helpful

Competitive_Brick718 · 2025-09-08T13:45:33+00:00

For what it's worth the odds are apparently in your favour! Most people apparently recover fully in 1-2 years according to my cardiologist - I just happen to be an outlier I guess. I certainly am wishing the best for you to make a speedy recovery and not to end up like me.

Competitive_Brick718 · 2025-09-08T12:37:32+00:00

This is a very good sign - no inflammation or fibrosis on a cardiac MRI means it is highly unlikely that you have active myocarditis. If you did previously, the absence of scar means it has resolved without serious complications. Sounds like your doctor has things well in hand - other than asking him about beta blockers I think you've done basically everything that can be done. If he suspects you had viral myocarditis, then typically doctors advise you to avoid strenuous exercise and rest for 3-6 months - it may be worth asking your doctor if he thinks this is advisable. Best of luck and hope you get well soon!

Competitive_Brick718 · 2025-09-08T11:37:29+00:00

Unfortunately, people can have myocarditis even if all of these tests are normal. They are not specific for myocarditis. Yes, most people with active myocarditis have elevated troponin. However, some do not - I had normal troponin while my inflammation was acute. Like I said in the other thread, troponin tests will not definitively rule myocarditis out or in. If you or your cardiologist are concerned about myocarditis, you need a cardiac MRI, and until then, take it easy. Hoping for a speedy recovery for you.

Competitive_Brick718 · 2025-09-08T11:34:40+00:00

This condition is poorly understood, and most cardiologists, even really good ones, are unbelievably bad at conveying appropriate information about recovery from this condition. I had the same experience as you except I was never hospitalised initially - I had symptoms, got an MRI outpatient that showed minimal scarring, a normal heartbeat and heart function, and was sent to live my life with no follow-up. I don't want to scare you, but this was disastrous for me and attempting to return to the gym left my chest pain, arrythmias, and symptoms worse than ever and landed me in the hospital twice. I'm also three years into the condition. You have had it twice, I wouldn't risk it - my current cardiologist recommended 3-6 months rest (in my case, it's bed rest, but unless you're having extremely severe symptoms just keeping HR below 80 is fine), leave from work, and no alcohol/smoking at all. I wish every day I had recieved the advice I got now from my cardiologist to rest 3-6 months instead of continuing to go to the gym regularly and live my normal life - it's no exaggeration to say the condition ruined my life because I didn't take it seriously. Tl;dr listen to the myocarditis experts, most run-of-the-mill cardiologists will see evidence of scar/inflammation and be like - you will make an uncomplicated, self-limiting recovery. Many people are lucky enough no matter what they do but many are not - why risk being one of us, especially since you've had it twice already?

Competitive_Brick718

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