1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Nitric oxide and its possible implication in ME/CFS (Part 1 of 2)
Andrew Gladman explores the current and historic hypotheses relating to nitric oxide problems in ME/CFS. Part 1 of a 2-part series puts nitric oxide under the microscope and explores what it is, what it does and why it is so frequently discussed in the world of ME/CFS. Part 1 focuses...
Discuss the article on the Forums.

Myocarditis

Discussion in 'General ME/CFS Discussion' started by Martial, Apr 25, 2014.

  1. Martial

    Martial Senior Member

    Messages:
    1,043
    Likes:
    726
    Ventura, CA
    Anyone have tips on how to deal with this, or things I can do? Being tested for it after all the basic common symptoms and its kind of crazy to think I might die in my sleep or that my heart is just going to stop, I noticed severe fluttering, and issues of short breath when laying down in bed at night, and sometimes feelings of fleeting anxiety feelings, or just feeling like it is working too hard, even had hand and feet tingling and leg swelling..

    Had an EKG today at my LLMD's office and he wants to run a Stress Echo test, alongside maybe doing an MRI scan of the heart, also did a brain function "health" and Neuro test for the brain today, and having an MRI of my brain for those issues as well.. Really crazy stuff, I literally feel like I am going to die very soon from this infection but not really afraid of dying. I may be acting a bit melodramatic as well, but I just feel like if anyone felt the things I did in this body more recently it would feel like there is a scythe around their neck as well haha!

    Anyways here is to hoping for a full recovery, I guess I just have to roll the chance dice and if I am not going to make it that it be swift and painless!
     
  2. adreno

    adreno 3% neanderthal

    Messages:
    2,611
    Likes:
    1,987
    Tundras of Europa
    Last edited: Apr 25, 2014
  3. lansbergen

    lansbergen Senior Member

    Messages:
    1,161
    Likes:
    594
    I was there. I think I was even further gone than you are now. My heart stopped several times and automatic breathing did not work anymore. It was frightening

    It disappeared with overall improvement. The immunemodulator I use is a superoxide scavenger. lately I found that superoxide is a defence mechanism and with the pathogen I suspect SOD2 is impaired.
     
  4. Martial

    Martial Senior Member

    Messages:
    1,043
    Likes:
    726
    Ventura, CA
    Thanks for the helpful articles and suggestions! @adreno

    Oddly enough the issues started a bit after stopping the methylation supps because I was far too wired and felt way to aggressive/agitated. Every time I would do normal movement and things at work I would get this intense fluttering feeling in my chest, and literally could feel my heart stop for a good few seconds at a time, then it started doing other things like when I was in bed at night, or the tingling sensations and chest pain, etc.. already got the EKG so I know it is not a constant issue. I don't think there is a high chance I will have full cardiac arrest but I guess I will find out my options after more testing, Seems that it is an issue for many others with Lyme, and the ones being treated for it usually get over it though sadly some do pass. I am definitely gonna use those suggestions, oddly enough I actually have CoQ10, Taurine, and Astragalus all here in my house! I just hope it works as well for a bacterial infection as it discusses for viral induced myocarditis.



    @lansbergen

    Wow glad to hear you are doing better, and interesting to know the immune modulator had all those positive effects!
    Was it a more semi sudden onset for you as well? It is weird to think I have had this infection for a good amount of time now, and with treatment I get symptoms that can be much more dangerous...


    p.s. I am pretty sure in the end it will all turn out alright, probably have some degree of inflammation but I don't think it will turn into anything worse then what already happened. Keeping a good eye on it, using preventive treatment and watching out for issues should keep me relatively fine and well from any major complications.
     
  5. lansbergen

    lansbergen Senior Member

    Messages:
    1,161
    Likes:
    594
    I had what seemed the worst flu ever. I never was the same again. In the beginning it was mild but became worse and worse. I should not have pushed.
     
  6. adreno

    adreno 3% neanderthal

    Messages:
    2,611
    Likes:
    1,987
    Tundras of Europa
    I would also make sure you get enough choline. A choline deficiency is deadly for your heart. I don't know anything about Lyme, but viruses can create antibodies that block acetylcholine receptors.
     
  7. Helen

    Helen Senior Member

    Messages:
    576
    Likes:
    590
    Maybe you already know that myocarditis is one symptom that can be caused by Lyme disease - as @adreno also writes about. It is supposed to be a serious symptom in Lyme. Hope you will get help from a good doctor.
     
  8. Sherlock

    Sherlock tart cherry etc. for joints, insomnia

    Messages:
    826
    Likes:
    309
    Czechosherlockia, USA
    I have had viral myocarditis, to the best of my reckoning.

    But from your symptoms, you might turn out to have something like Wolf Parkinson White syndrome, which would be easily seen by the delta wave on your EKG. Much less mortality there.Was WPW already excluded?
     
  9. Martial

    Martial Senior Member

    Messages:
    1,043
    Likes:
    726
    Ventura, CA
    No, the EKG came back normal but it still would not rule out inflammation so this is being followed up with other tests, I always thought if the EKG was in the clear I would be fine, however I guess this is not the case for a vast majority. I am not worried though I mean there is always a slight risk of death but it seems I am getting the best treatment I could ask for and am plenty aware of all the symptoms, Yes I was aware but never expected it to become more serious WHILE treating, unless the inflammation from herxing did it who knows.. I have actually been using at least 600mg of choline a day for nerve health anyways.. I mean everything else I do definitely is in support of my heart, no high blood pressure or high cholesterol so that is good news.
     
  10. acer2000

    acer2000 Senior Member

    Messages:
    616
    Likes:
    271
    Whats your ejection fraction? Also, you mention Lyme. You have Lyme disease?
     

See more popular forum discussions.

Share This Page