I want to update this thread and hoping I can do it in a clear and coherent manner as so much has happened. I also want to preface that this is my own story and nothing here should be taken as medical advice. I am hoping that it can be helpful in case anyone else down the line experiences what I did (and also hoping for any ideas that can help me!)
Last Thurs I had one liter of saline infused over a 3-hour period (with added Magnesium in the saline) per my cardio. It was done at infusion center at hospital. After the procedure, I had severe shortness of breath where I felt I might die and my oxygen dropped to 82% on pulse oximeter. My BP dropped and my HR went into the 140's. The nurse rushed me to the ER and in retrospect they really did not help me (except did an EKG and some basic blood tests.)
I spoke with my cfs Dr (who God bless him is the most wonderful and attentive doctor I have ever had.) He felt that I had "fluid overload" from the saline and that it caused "flash pulmonary edema" in which my lungs were temporarily filling with fluid from the saline. He said this should not occur from one liter of saline unless someone had congestive heart failure (which I do not have) and that he wished the ER had done a chest x-ray, BNP test, and arterial blood gas test to capture what was occurring in the moment but now it was too late.
He said the pulmonary edema was quick and resolved so nothing I can do in that regard. He said NOT to get more IV saline which believe me, I had already decided on my own! I had fought to get a prescription for IV saline 2x/wk from my cardio but my IV saline career is now over. And like most treatments that help others, my body cannot process them. He also spoke with my cardio who was out of town and said that cardio would be calling me.
Then over the weekend, I started having "angina" type episodes again and one really bad one after I ate breakfast. I got really short of breath (although not as bad as the saline incident) with chest pressure and pain. My cardio had given me a nitoglycerin spray and he still is "undetermined" if I have microvascular angina but I was terrified to use the spray and chose not to b/c my BP was all over the map. It ranged within an hour from 88/59 to 116/81 (which is the highest BP I have ever had in my life.) The nitro packaging says not to use if your BP goes into the 80's which mine can. So I waited out the episode and wondered if it was some kind of PEM reaction to everything I had been through?
My cardio called me last night and said he was "Honestly not sure what to do with me next." This did not make me hopeful or give me any confidence that I could get better. He said he could not see how someone could get fluid overload from one liter of saline unless they had "ventricular stiffness" in their heart. I had two echocardiograms this year by my former cardio (most recent in July 2014 which was an exercise echo.) She had told me the results were "Perfect" but I later learned that test had shown ischemia on the exercise ekg portion and therefore not "Perfect." So, it makes me doubt if the rest of it was "Perfect" as well.
My current cardio said he would like to repeat the echo to check for "ventricular stiffness" and other things. I have no idea if my insurance will authorize this but honestly do not care at this point and it is scheduled for 11/18. He agreed that if I had pulmonary edema from the saline, that it is now passed and nothing I can do about it.
I asked my cardio about EBV (or other pathogens) causing myocarditis or an infection in the brain which could affect the autonomic system and blood volume, etc, but he said absolute NO. I don't think he sees an infectious role here but prior to having mono/EBV and then another virus 9-10 months later which we suspect was a re-activation of EBV (based on positive IgM and early antigen tests for EBV) I was in perfect health. I did NOT have any cardiac or autonomic problems and used to work out with a trainer at the gym and run on the treadmill and life weights and worked full-time in an extremely demanding career for 16 yrs. I find it so hard to believe that the two are not connected.
My cfs doctor is certain they are connected and feels the EBV is affecting my hemodynamic, cardiac, and autonomic systems. I wish I could find a cardiologist (literally anywhere) who was also familiar with ME/CFS so s/he had both sets of knowledge. My coronary arteries are perfect on CT scan with no blockages and my echo (supposedly) was perfect with no diastolic dysfunction, perfect ejection fraction, and normal cardiac output. I have no arrythmias but have sinus tachycardia which is controlled by Atenolol.
So the questions are why did one liter of saline almost kill me, why do I get these angina episodes, and why can I no longer breath and walk at the same time and have to use a wheelchair? Prior to mono in 2012 and then the re-activation of EBV in 2013, my health was excellent so this makes no sense.
I am open to any ideas and promise that I run everything by my doctors and do not take them as medical advice or treatment- just things to research and explore b/c I am desperate to get better. There are moments that I am so ill that I think I will not survive this and should be making burial arrangements (and want to clarify that I am NOT suicidal and desperately want to get better. I have a wonderful husband and family and would spend every penny of my savings if I could get better- I just don't know what else to do from a treatment perspective.)
Sorry these posts end up so long and thank you to everyone who is reading them and helping me.