@parvofighter
Hi Gingergirl, was just popping in and saw your post. I sent you some files on microvascular angina and viral cardiomyopathy back in Nov 2014;
Thank you and you post last night was too late for me to respond. I did get the stuff you sent me in Nov (and responded at that time) but it was right before I leaving to see my ME specialist. I know you said I could mention you but I do not know your name or what I was supposed to say! He has tested me twice for all forms of Parvo (six months apart) and I am completely negative on PCR and IgM (and only positive on IgG which he felt was a past infection.)
As others have pointed out, it is not possible to determine from your clinical history whether you have microvascular angina/"Atypical Angina"; however this should not be ruled out given your symptoms which sound ominously like cardiac ischemia. Importantly, many patients with microvascular angina will have normal echo, as did I.
I totally agree with you and do not rule out micro-vascular angina and do not feel it is possible to rule it in or out at this point (and both my ME and cardio agree on this point.) That is why they have wanted me to try the Nitro more times to see if it helps and felt this could be diagnostic. So I am very glad that I tried it a second time (b/c the first time that I tried it, it did not help whatsoever!)
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Endothelial function is under autonomic control, so your autonomic signs and microvascular signs are not incompatible with each other
I apologize that I do not understand what this means? Do you mean that micro-vascular spasms are autonomic and therefore could be due to my low BP and low blood volume (i.e. not enough blood to profuse the heart when I stand up?) If this is what you mean, this has been my feeling of what might be going on b/c I have never had an episode lying or sitting and they are exclusively when I am standing or doing any kind of exertion.
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There is disagreement between most North American cardiologists and their EU peers on the role of viruses in viral cardiomyopathy or in atypical angina (atypical angina = angina with normal or only slightly obstructed coronary arteries). The HHV-6 Foundation is a credible source of the latest info on viral cardiomyopathy. Kristin Loomis could provide you with some guidance.
I really do not know what cardios in Europe do but will take your word for it. I have now seen three cardios in the US (my current being the best of the three but is still limited in his knowledge and had no prior familiarity with ME/CFS before meeting me.) He hospitalized me for tests and is adamant that I do not have an infection in my heart so this is a dead end with him. I am negative for HHV-6 (except for IgG) and not sure what I would be asking the HHV-6 foundation?
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The gold standard for diagnosis of viral cardiomyopathy is an endomyocardial biopsy (EMB), which not only looks for viruses (PCR), but also immunohistochemistry for inflammation, etc. Most American cardiologists will not "look under the hood" for viruses, and IMHO their assertions that viruses play no role in atypical angina is spurious. One of the more progressive U.S. cardiologists is Dr Jeffrey Towbin. I sent you some info from his old lab, where they discuss finding viruses on EMB, and treating patients with same. He could point you towards help.
I am sure you are right but they do not do this biopsy in the US (I inquired about it) and it is not realistic (health, family, and financially) that I fly to Germany. I am barely able to walk across my home right now! I told my ME doctor that I would much rather just assume I have a virus in my heart and then discuss what the treatments might be. I didn't understand from all your messages what the treatments are and can someone do them without access to the biopsy. I am not able to do anesthesia (or even IV saline) so a major surgery is out for me. Also, my cardio is not going to run these tests!
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I received both EMB diagnosis of viral cardiomyopathy, and IVIg treatment in Germany in 2008, which eliminated ALL of my cardiac symptoms, as well as (spectacularly), the M.E. signs and symptoms. Unfortunately this remission lasted for only a few months - but it was spectacular. Previously, I had had only slight increased fluid on my echo, and Canadian testing for viruses was negative, indeed I was not given a cardiac follow-up after presenting to emerg.
I think our scenarios are different here in the sense that I have no increased fluid on my echo and I have been thoroughly tested for viruses at OMI. I do have several positives (EBV, VZV and more recently learned I have two positives for Echo & Coxscakie virus) but my cardio back in Sept admitted me to hospital via the ER (but you are correct that I did not have any invasive cardiac tests but did have the cat scan and lung scan.)
Do you know why your remission only lasted for a few months if you treated the virus with IVIG? Did all of your cardiac symptoms return or are you now free from them? I know IVIG is the treatment of choice for a positive Parvo PCR (my ME doctor told me this, too) but I am negative on Parvo and negative on all PCR testing, even for EBV (but positive on all the other EBV tests.)
However, I had such a classic exposure to - and presentation of - Parvovirus B19 that I trusted my clinical findings - and how dire my heart issues were (crushing chest pain, BP 180+, etc); and luckily made it to Germany, where the diagnosis of viral cardiomyopathy and endothelial dysfunction was confirmed. They didn't only find active viruses on PCR - they also found inflammation, and auto-antibodies to endocardium and endothelium.
This is where I get confused by your messages since I am negative for Parvo (with valid testing from OMI.) If I am understanding your quote, your BP was 180+ whereas my BP is always on the low side and averages around 90/60. My cardio said even if an invasive biopsy was done, they could take a piece of the heart that did not contain the virus and miss it. I guess the bottom line is, my cardio is not going to do this test for me and does not feel it is necessary and he has spoken with my ME doctor twice on the phone.
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Certain viruses have tropism (target) for the endothelium, including PVB19, the #1 virus found on EMB. The Germans aim to eliminate the virus from the heart - if they don't, they report relapse, fibrosis, and progressive cardiomyopathy. In other words, this doesn't go away on its' own.
How do they eliminate viruses from the heart (assuming it can be done for others besides Parvo.) I read everything you sent me but never understood what the treatment was. Is it only with IVIG or are there anti-virals or medications? I would love to understand what your actual treatment was if you are willing to share it and if the treatment has continued to work to this day and made a difference.
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The University of Dundee has linked M.E. with endothelial dysfunction in their, "Large and Small Artery Endothelial Dysfunction in Chronic Fatigue Syndrome" article. Worth a read.
Where is Univ of Dundee? Please excuse my ignorance and I am not familiar with it!
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Drs Mella and Fluge of Rituximab-in-M.E.-in-Norway-fame, have given very loud signals that they believe endothelial dysfunction to be a core factor of M.E. They hint that they will be publishing on this - can't happen soon enough - perhaps they will provide guidance if you email them?
I have no idea how to e-mail them or what I would be asking!
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Routine testing such as echo will not typically pick up atypical angina; I have attached a copy of the "Proposed Scheme for Investigation" for Atypical angina.
I fully agree with you here and both of my doctors said that there is no definitive test for micro-vascular angina (or Syndrome X.) The echo measured other stuff and I was told with all echos that I do not have diastolic dysfunction, ventricular stiffness, normal ejection fraction, normal valves and functioning, etc, so it is confusing.
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The NIH has sponsored MANY studies on atypical angina as part of their W.I.S.E. studies, or "Women's Ischemia Syndrome Evaluation". The head of this initiative is Dr Noel Bairey Merz - I'd urge you to connect with her. Atypical angina is NOT benign, and is associated with significant cardiac morbidity.
I can google her and see where she is located and I would love to find a cardio who is in my area or willing to do a Skype consult. Thank you for the info and is sounds like she is the most familiar with womens issues? Does she still see patients?
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Many endothelial tests are non-invasive, however the ultimate test is the intracoronary acetylcholine test (aka "Coronary Vascular Function Study", and if I were you, I'd be pushing for this.
I have not heard of this test and will google it. Is this one done in the US or only in Europe?
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And of course - you need a good differential diagnosis to rule out other potential causes of your ischemic signs. As part of this, you need to see someone competent and up-to-date with Atypical Angina and Endothelial Dysfunction.
What else would this involve? I have had a lot of testing and not sure what else to ask for!
Importantly: IF you have atypical angina, your risk of cardiac events is increased by 10x. On the flip side, if you receive appropriate treatment (nitrates is part of that), restoration of endothelial function is associated with improved cardiac outcomes, specifically a 7.3 fold reduction in Ischemic Heart Disease events compared to untreated patients (W.I.S.E. research)
I am already fairly certain that the ME/CFS and autonomic/cardiac stuff will kill me some day so we are in agreement here. I am dedicated to finding an answer if there is one to find. When you say "nitrates" is part of the treatment for microvascular angina, do you mean the sublingual Nitro like I tried yesterday or something else? I also take a beta blocker (which looked like it was one of the treatments from your chart.) I am still confused what else is advised for treatment? I took Famvir for eight months which did not help my symptoms and am now taking Valcyte.
Bottom line, Kristin Loomis @ the HHV-6 Foundation; Dr Jeffrey Towbin (I believe at Cincinnnati Children's); and Dr Noel Bairey Merz - all of these would be good places to start. I think I provide their emails in the attached files. You need to get to the bottom of this - atypical angina used to be considered benign, but the dozens of studies from the W.I.S.E. research show it's not.
I will check for their e-mails in your files but am not quite sure what I would say (or how I would explain how I got their e-mails since I do not even know your name!) What is it that I would be asking them?
Best of luck, Ginger, I hope this helps .... Bottom line, the fact nitro works should be a cause for celebration, and concern IMHO.
My doctors felt the Nitro would be diagnostic so I will see how they interpret it. So far I have taken it twice and it worked only the second time which is why I posted b/c I do not know how to interpret this myself!
I appreciate all your info and if I seem scattered and confused in my responses, it is b/c I am totally overwhelmed at the moment by people sending me things (but I do not want to miss something important.)