Idiopathic Cardiomyopathy

Discussion in 'News and Research' started by IanH, Sep 18, 2013.

  1. IanH

    IanH Active Member

    Idiopathic cardiomyopathy is associated with ME/CFS. This has been shown by Dr. Paul Cheney and others. Some recent deaths of patients with ME/CFS were put down tho cardiomyopathy.

    Here is a recent study showing the relationship between idiopathic cardiomyopathy and vitamin D deficiency. While it is not about ME/CFS, the relationship with vitamin D still stands.

    I can only supply the abstract but the study shows quite conclusively that by taking 50,000IU weekly for eight weeks followed by 50,000IU monthly for three months the markers of CHD were significantly reduced and patients physical ability, such as walking a significant distance was enabled.

    http://www.ncbi.nlm.nih.gov/pubmed/23517460
  2. jaminhealth

    jaminhealth Well-Known Member

    Ian, I don't deal with CFS per se, but who knows...

    The U.S. lab range seems to be 20-100 and docs get scarey and shakey when a person gets close to that 100, my doc was kinda shakey when I got up to 80 at a point.

    Some folks on another group I'm on, claim their levels are 120 or so and they feel much better......

    Can you comment on that one...
  3. mbofov

    mbofov Active Member

    Interesting, Ian. I'm with Jam, though - I think you need to get your levels measured first before supplementing with such high doses. The study you cited said that 6% of participants had sufficiently high vitamin D levels, so only the remaining 94% were given the extra vitamin D. So I think it's saying that if your vitamin D levels are high enough already, don't take those huge doses.

    My level is around 60 I think.

    Have you heard of an impedance cardiography? It's a test done using a BioZ machine (many cardiologists have this in their office) which measures vascular resistance, among other things. My results were definitely skewed and my doctor said it was a form of idiopathic cardiomyopathy. He gave me carvedilol, a low dose, which didn't improve my symptoms any.

    There are probably different causes of idiopathic heart failure and it looks like low vitamin D levels may be one of them. However, getting my vitamin D levels up to where they should be did not improve my stamina or stop my crashing unfortunately. But it's still a good thing to do, of course, to get your vitamin D levels up where they need to be.

    Mary
  4. IanH

    IanH Active Member

    What levels of 25(OH)D one can tolerate is not really known, hence the "shakey" doctor. Also, even this study does not really know much about vitamin D itself and the way it should be administered. Part of the problem is that few studies on vitamin D supplementation have been done properly. Rule #1: when vitamin D is supplemented it MUST be accompanied by magnesium or the results obtained are mostly invalid. When looking at cardiomyapathy it is essential to give both vitamin D and magnesium. Both have independently been shown to have benefit but when taken together is when you will see more reliable results. Rule #2: when vitamin D is supplemented it SHOULD be accompanied by vitamin K. These studies have not been done.

    Regarding safe levels: It is probably safe to have levels above a 100ng/ml. However not in Sarcoidosis or possibly in some forms of kidney disease. So to me testing serum levels of vitamin D is rarely necessary, it is more important to test for pathologies that might respond badly to increased levels of vitamin D - which are mostly rare.

    "Hypervitaminosis D" is a scare word but there isn't much data to say what level it is and the studies that have been done are mostly invalid for a variety of reasons. I remember when vitamin C was first being studied in the 60s and 70s and the RDA was 70mg, people were taking 500mg and the fear mongering that it caused. Now people commonly take 500mg and raise their blood levels to levels far far in excess of what 70mg would do.

    So if you have vitamin D levels tested, what does the result mean? (and how reliable is it). However I would agree that a level of 80 is fine, I cannot see a reason to go above it. As I understand it you guys have been taking vitamin D (with magnesium and vitamin K) for years now so you are probably getting the most out of it.

    Mary it sounds like your symptoms of crashing are not really related to your cardiomyopathy but are related to ME/CFS.
    Also vascular stiffness is common in people with advanced ME/CFS.

    This is because angiotensin II injures the vessel and increases vascular stiffness and inflammatory stimuli impair arterial wall integrity. These two factors are significant in advanced ME/CFS and FM.

    Endothelial nitric oxide plays an important role in modulating vascular stiffness and treatment with estrogen attenuates vascular inflammation and reduces vascular stiffness. As you know people with ME/CFS have dysfunctional nitric oxide metabolism and as we age our estrogen levels fall significantly.

    So I would say that your vascular stiffness (Pulse wave velocity) is a result of your ME/CFS. To call that "cardiomyopathy" isn't strictly correct.
  5. mbofov

    mbofov Active Member

    Hi Ian - Thanks for your very detailed reply - I do appreciate all of your knowledge and your willingness to share it.

    I completely agree that crashing (PEM) is not related to cardiomyopathy and is a symptom of ME/CFS (I think crashing, or post-exertional malaise, is the hallmark of CFS). Someone might have fatigue from cardiomyopathy, but it would not be delayed onset exhaustion occurring some 24 hours after the exertion.

    I do take a low dose of estrogen - 1/2 mg. every other day. I'm afraid to take more but maybe I should up it to 1/2 mg. every day -- I also use progesterone cream. I might play with it and up the dose. Actually, I'm taking about 1/4 of what was prescribed for me because I want to take the lowest dose possible.

    I also agree that the vascular resistance is a result of ME/CFS. You've probably read the paper by Andrew Peckerman in which he states that the degree of abnormality shown on an impedance cardiography exam directly correlates with CFS symptom severity.

    Thanks again -

    Mary
  6. simpsons

    simpsons Member

    can anyone explain why taking vit d and b12 test at the same time would interact together?
    my uk gp was not happy at my asking for both together said one influenced the other

    have slight thickening of mitral valve and slight or mild regurgitaion

    interested to learn what pulse wave is?
    have noticed that mine is sometimes wide mostly 70 pulse but sometimes very narrow pulse 69 63 is lowest
    sitting up gave wide reading 135 35

    hypotensive at times on standing slightly

    exercise seems to make the chest pain worse and wondered if this could be making the regurgitation worse?

    suspect mito function bad as tested by myhill years ago

    so confused atm

    although echo stress echo didn't bring on much chest pain was silly really and went well rested
    after though chest pain and breathlessness was much worse and very fast short distance to come on

    going to have tilt table test done but concerned about doing this with me as often symptoms are delayed

    seems to be adrenaline that pushes me to keep moving and when that runs out am much worse

    also some p wave variation detected and noted by gp who didn't tell me anything but just said normal

    arrhythmia are being noted by my cheap blood pressure machine, that seems to coincide sometimes with the chest pain or standing up but not always

    sorry so many questions, hope its ok to ask on this thread