I’m hoping someone will know something about, has suffered themselves with or can point me in the right direction of a forum where I can find out more about myocarditis.
It could be another dead end in my years of trying to figure out the source of all my issues but my Mrs is currently reading a book, where the lead characters problems resemble mine to a tee and it turns out she has myocarditis.
Her case starts with a bout of illness, drags over a 10 year period and culminates in heart Rhythm issues. My bout of illness was 11 years ago and my heart issues have been the last 2.5. However after the bout of illness, I had chest pain for a number of months which I was told at the time was costochondritis. Since the illness I’ve suffered with fatigue, muscular issues, constant injuries and inability to carry out sustained exercise. All culminating with AF for the last 2.5 years.
If anyone has any info about this ailment, has had it themselves or can point me in the direction of a forum where I can talk to the people who know it best, the patients, then would be much appreciated.
Thanks guys 👍
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Elli86
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Hi Elli86, I've never suffered myself, but helped a dear close friend through several years of severe chest pain and misdiagnoses. Eventually her diagnosis was pericarditis, though myocarditis was one suggested for a while. (It being inflammation of the heart muscle as opposed to inflammation of the membrane which surrounds the heart). Both of those things are similar in symptoms to costochondritis and, low and behold, her son in law became ill a little while after, and went through the same misdiagnoses. In the event he was eventually diagnosed with myocarditis. But had to opt for a private medical consultation and tests to get it.Given all the confusion, and that you clearly feel something continues to be wrong, you should probably be persistent in asking for clarification and explanation for the reason your particular diagnosis is unclear. Because the water is very muddy around these conditions. I wouldn't necessarily opt to believe that a novel's description of myocarditis was accurate enough to come to a conclusion about my condition, but follow your instinct on the suspicions you have that you have not yet reached the real reason for your ongoing symptoms and persist until you are satisfied.
I’ve suffered with inflammation ever since I got badly ill 11 years ago and the only diagnosis I’ve ever been given for it is fibromyalgia, which I believe is a total cop out. No one has ever really listened to the fact that this all come about after the bout of illness where I was bed ridden for a week and then continually ill and fatigued for around a further 6 months.
The first time I’ve been diagnosed with anything concrete has been the af which was diagnosed around 2/2.5 years ago now but I’m now thinking myocarditis may have been the underlying cause after all.
It’s all a bit deflating to be honest and I’m not too sure why. Feel a little like I’m back to square one. Doesn’t help that I’m still recovering from my ablation 13/14 weeks ago 🙄 been in this position many times before, get my hopes up about a diagnosis only to be disappointed again. Maybe this is my way of preempting it. Who knows!
Get the recovery from the ablation out the way (if it ever abates) and then see what happens I suppose.
Original illness was a bad case of the flu which had me in bed for around a week. Wasn’t seen or treated at all for this as I was young, fit, didn’t think much of it and thought I would bounce back. How wrong I was 🙄
Wasn’t until roughly 4/5 weeks later when I wasn’t improving that I started talking to doctors. I can’t remember exactly what tests I had done to be honest as it was such a long time ago. I can just remember finding it incredibly difficult to get anywhere at all and for anyone to listen to me. Only tests I can remember for 100% were blood and stool tests but I can’t remember exactly what they were looking for in the blood tests.
It sounds like a post viral syndrome and it is possible that what was diagnosed as costochondritis was myocarditis. I don't know how you could get to the bottom of this. I understand that myocarditis can leave scarring in the heart and also cause enlargement . You must have had echos before your ablation - did any heart enlargement show up?
I’ve had echos in the past yes, also standard mri and also what I believe is called a stressed mri where they inject you with something that makes the heart speed up to simulate a workout. All came back fine apparently.
Your complaint about repeated injuries and muscle problems caught my eye. Are you sure you've never been given a Fluoroquinolone antibiotic? One of the major problems with FQ toxicity is that it is rare for anything to show up in tests. But the attack on collagen the drugs provoke can lead to muscles and tendons being easily injured . I only have to pick up a slightly too full watering can to feel stuff tearing in my upper back!
That’s interesting. I’ve been given plenty of antibiotics in the past but I’m not sure if that’s one of them. Not something that can be counteracted either way then? Would that cause heart complications as well then?
Oh yes. I had my first afib attack after my last run in with Cipro. I might have had an attack after having it a year earlier for diverticulitis .I thought it was just a very fast heartbeat and it only lasted about 3 hours. When I saw my G P the next day all was normal. The problem with FQs is that they are not like other antibiotics. They act like chemo drugs and like chemo drugs can cause delayed reactions - for instance you can get an FQ provoked tendon rupture months after taking the pills. It is now 6 years since my last exposure and I still get a lot of tendon problems . I have had to have both hips replaced ( no cartilage whatsoever left) and suffer from pain in my ribs due to cartilage degeneration. This started after an exposure in 1999 when I was only 47 so not exactly due to old age! If you have ever had prostatitis then you would have been given them as Cipro was the standard drug for that for a long time.
That’s interesting 🤔 I don’t think I e probably ever had them then to be honest as they sound like they’re given due to more serious conditions? I can’t remember anything I would have had that would have needed that level of antibiotics. Might be able to find out though if I phone up and ask to see medical history?
Unfortunately that is not the case. For quite a while they were dished out for all sorts of banal infections- sinusitis, uncomplicated UTIs , chest infections. They were even given as a prophylactic for travellers diarrhoea! They were originally developed for severe infections like anthrax - they are implicated in Gulf War Syndrome as Cipro was given as a prophylactic to soldiers going to the Gulf in case Saddam had anthrax biological weapons. When there was the spate of anthrax attacks after 9/11 a lot of postal workers were floxed from taking Cipro. But there is no dosh in anthrax so they were heavily marketed by the drugs companies for lesser complaints. Because they are broad spectrum they had the advantage of not needing tests to see what bug you had and matching the correct antibiotic. In 2018 the EMA changed their guidelines to limit their use in banal infections and stop them being used as a first antibiotic if a safer one could be used. It would not harm to look in your medical records because if you have had them many of your symptoms could be as a result. The generic names all end in "floxacin" . The most common ones are Ciprofloxacin, Levofloxacin .
I’ll see if I can get hold of them then. I’ve changed doctors 3/4 times in the last 10/11 years due to moving and also incompetence of the surgery so might make it more difficult but I’m assuming all records should move with you?
When you found out the cause was the antibiotics, what were the steps after? Did it make any difference to your recovery knowing what caused it and was there anything you could do to counteract it? Or is it just a case of knowing what it was but having to live with the consequences?
Spoke to my post ablation consultant earlier and he wants me to come off bisop 2.5 entirely. I said I wanted to wean off so I’ve only taken half a tablet this evening and I feel like im getting withdrawal symptoms already 😫 feel extremely agitated and can’t sleep. The joys of AF!
I think I was originally floxed in 1990. I moved to Brum and started to suffer from sinusitis- probably due to the pollution. I was given several courses of antibiotics. I remember clearly getting tendonitis in my right Achilles tendon - because the physio for it was excruciatingly painful! Then I started with terrible back pain and knee problems. The docs said all this was due to dancing but it wasn't because I carried on dancing for 24 years and the knee and back problems got better though the back problems never completely resolved. . I spent the entire 90s knowing that something was wrong but there was no internet then. I am pretty sure I was given an FQ again in 1999 as again I had Achilles tendonitis and the rib problems started. Each subsequent floxing makes you worse but with time you can recover. I finally found out about being floxed in 2015 after 2 more exposures here in France . Luckily they were short ones. In 2014 I was given iv Cipro for diverticulitis and after 48 hours had tachy and neuropathy in my arms. The gastroenterologist stopped it but never told me I was having an adverse reaction and should never take it again. Interestingly after less than 24 hours the Achilles pain had started but again I never connected it to the treatment or mentioned it to the nurses. If I had they might have stopped it earlier. Because the bitch gastro never informed my GP of my reaction he gave me a course of it for a suspected UTI the following year. Luckily I only took one pill. Within an hour I noticed a reaction I had had in the hospital - dead weird, a sort of disconnect between my eyes and my brain ( very difficult to describe) so I looked it up online and discovered all the horror of floxing. I was lucky - if I had taken the full course things could have been worse. I thought I had got away with it - just some twinges in the good old Achilles again but a week later I was blue lighted to hospital with afib attack. I think it was a delayed reaction. In the time between subsequent exposures I did get better but it took years. One of the features of FQ poisoning is the relapses. You start to feel better even normal then wham! all the symptoms come back. In time the period between relapses gets longer and the relapses last a shorter time and get less severe- if you are lucky. The younger you are the better chance of a recovery but some people never recover. Some poor sods go from healthy active athletic types to wheelchair bound with just a dozen pills. In fact althletic types seem to be particularly badly hit. Relapses can be brought on by stress and trauma- I am having a very bad one at the moment due to my hip op . It happened when I had the other hip done last year but this time it's worse. There is no cure but some things can help. Magnesium is very important as the FQs cause a magnesium deficiency. Also not eating any food that might have been raised with FQs ie farmed prawns especially from the East. I never eat anything in Chinese restaurants that might have been imported from China as they use FQs in intensive rearing. There are various websites for floxies and Facebook groups with thousands of people in them. Those who have recovered give tips on what helped them. It is very individual. A supplement that has helped some people might make others far worse. Gut health is very important as FQs are the very worst antibiotics for destroying the microbiome but some people find probiotics make them worse. Your medical records should move with you. I was never able to consult my uk ones as by the time I found out about floxing they had been destroyed. Sorry for the long reply !
Thanks for the info. I’m going to request my medical records to see if I can notice anything. I can see why your worried about the impact of various drugs now. Does make you a bit more sceptical about it all. I don’t like taking any drugs anyway but I can see why you would start to doubt drugs in general.
Your story sounds strikingly similar to mine. Maybe your symptoms being slightly worse then mine though. I went from training 5/6 times a week heavily for years with literally zero injuries, to getting sick and then not being able to sustain any sort of exercise for longer than a few weeks/months at best before getting some sort of ligament/tendon/muscular injury. Massive fatigue/stamina issues as well.
I remember quite distinctly trying to go for my first run since being sick and not even making it down the road. Prior to illness I could literally run as far as I wanted without getting tired. I used to run 6/7 mile as a warm up before training. This was a huge shock to the system to say the least. 11 nearly 12 years now I think, and I’m still looking for answers. Last 2.5 I’ve now got the heart issues to deal with 😫
One of the nasty "gifts" of FQ toxicity is not being able to tolerate food or meds that previously were not a problem . This applies to vaccines too. Many floxies react badly to flu jabs and have to stop having them. I remember seeing pictures of a woman who was floxed with horrible lesions all over her legs. She had been getting better but her doc had persuaded her to have a tetanus booster. Shortly afterwards she died. Another woman on the floxiehope website said she had had a similar reaction but not as bad. I am scared to have a tetanus booster as after my last one my arm swelled horribly and I felt ill for a while. Since then I have had the two last exposures to Cipro so I don't want to take the risk.I was really struck when the first reports of long covid came out with the similarity of the symptoms to those of floxing - though without the skeletal injuries. Tendon injuries in particular are classic for FQ toxicity . The info sheets in the packages tend to say Achilles tendon and docs focus on this but any tendon in the body can be affected - even those tiny ones round the eyes. The ligaments in the teeth too giving rise to excruciating toothache with no sign of infection. I have had this and despite no sign of infection my dentist tried to persuade me into a root canal . I refused and came home and did a bit of research and found out that the teeth had ligaments and that they could be sprained - just like ankles! When I went back I asked her if it could be the ligament and she looked at the x rays again and said yes. The fatigue you mention could very well just be due to a post viral condition but the skeletal injuries make me suspicious .
I only know what I've read recently and that was for a friend whose teenage daughter had had her covid vaccine and wasn't feeling brilliant.
From what I could find out, I was surprised just how (relatively) little is known about the long term effects of myocarditis (or pericarditis) mostly because, so far as I could gather, it so hard to examine the heart at the level needed to understand what the inflammation has actually done to it when the infection or inflammation was actively present.
I would think the chances of its being a cause of AF or AFl must be pretty high given that they both seem to arise themselves from stress to certain neural pathways.
I’ve been reading that diagnosing it can be quite difficult and also that there is a high probability of it leading to all sorts of arrythmia issues.
Would be nice to know if that was the original cause and/or if it’s still the cause. Hopefully could be treated and may improve my situation. I’m going to bring it up on my follow up call on the 30th but I’m not sure how much they are going to entertain it judging by how helpful, or not so, they have been on other calls. 🙄
I hate online medicine with a vengeance. I paid a gastroenterologist privately and that ended up online. What a waste of £180.00 that was.
I wouldn't get discouraged about your heart issues though as it's clear that the heart is very capable of all sorts of things, even repairing itself over time ("remodelling" the doctors seem to call it), especially when things that stress it are reduced or removed. Things that stress the heart are obesity, sedentariness (just 10,000 paces a day of stiff walking is known to be an excellent exercise for the heart), high blood pressure, uncontrolled diabetes , conduction issues like arrhythmias or heart blocks and the like and, yes - the muscle changes that the various "-opathies" can cause.
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