• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

My cardio thinks I have microvascular angina- need some feedback!!!

Gingergrrl

Senior Member
Messages
16,171
I have found that these devices are not reliable for me, especially in the winter when I have more problems with Reynaud's Syndrome. I can certainly understand the device might not work correctly if there is little blood moving through extremely white fingers. I wonder how often these clever little devices are wrong. If medical staff can't rely on the readings, just how useful are they, especially if unexpected anomalous readings are simply ignored?

@jimells It is a great question and I do agree with you that the readings can be wrong due to all kinds of factors including if you have Reynauds affecting your fingers.

However, in my case, my doctors now believe that I really did experience a temporary drop in oxygen b/c my lungs were filling up with fluid after the IV saline (called "Flash pulmonary edema") so the 82% reading was most likely correct. Unfortunately the ER doctor decided to just dismiss it as an incorrect reading which is now both sad and laughable to me (but not surprising.)

I will explain in another post tomorrow what we now think happened.
 
Last edited:

Gingergrrl

Senior Member
Messages
16,171
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.
 

halcyon

Senior Member
Messages
2,482
It kind of sounds like you don't actually have low blood volume after all. At least for sure not at the time when they were doing the infusion. It seems like the only way you'd get flash pulmonary edema (with an otherwise healthy heart) is if you were already starting out hypervolimic. This could also explain why your ADH level is so low and shows that taking vasopressin probably would have been an extremely bad idea, possibly leading to the same outcome.

It's so hard to figure out what to do next when you start stumping every doctor you see, I know exactly how you feel. It's good that you're having another echo, hopefully they will scrutinize it a little closer this time around. I'm honestly not sure what you should do next.
 

Gingergrrl

Senior Member
Messages
16,171
It kind of sounds like you don't actually have low blood volume after all. At least for sure not at the time when they were doing the infusion. It seems like the only way you'd get flash pulmonary edema (with an otherwise healthy heart) is if you were already starting out hypervolimic. This could also explain why your ADH level is so low and shows that taking vasopressin probably would have been an extremely bad idea, possibly leading to the same outcome.

It's so hard to figure out what to do next when you start stumping every doctor you see, I know exactly how you feel. It's good that you're having another echo, hopefully they will scrutinize it a little closer this time around. I'm honestly not sure what you should do next.

@halcyon You know I wondered about that and yet all my doctors refer to me as hypovolemic b/c my BP is so low and every time I try to give blood (at any lab) or try to start an IV, they tell me I am dehydrated no matter how much I drink.

I had done the saline IV three times (each one week apart) and now wondering if the saline somehow built up to the point that I was hypervolemic? Can this happen? I felt great after the first saline infusion (almost cured for 48 hours) and then bad after the 2nd one, and then the disaster reaction after the third. So is it possible that my baseline is hypovolemic but each saline IV pushed my blood volume up? I do not have polyuria and actually have the opposite and do not pee a lot as if my body is trying to hang onto the blood volume (sorry if that is TMI :D.)

I never took the desmopressin and felt it would lead to a bad outcome but did not understand the same thing could happen with the saline.

I do feel confident that my current cardio will scrutinize this echo very thoroughly and his results will be accurate. I really am not sure if I have a "healthy heart" b/c I am so impaired.

ETA: I noticed much after the fact that you tried to start a chat with me and when I am on my phone, that function doesn't work and I don't see it. So I wanted to apologize to you and anyone else who may have tried to contact me by chat, that unless I am sitting at my computer, I don't actually see it.
 
Last edited:

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
every time I try to give blood (at any lab) or try to start an IV, they tell me I am dehydrated no matter how much I drink.

I have no idea if this is what is going on with you but it is known that many with ME/CFS have hypercoagulation--I believe this is has been related to the effect of pathogens. I have had it tested at Hemex labs and did indeed have hypercoag. This made getting blood out of me extremely difficult and someone who was not so familiar with hypercoag might have thought I was dehydrated.

When I treated the hypercoag, I did feel better.

Just one more thing to ask your doctor! :cool:

Sushi
 

CFS_for_19_years

Hoarder of biscuits
Messages
2,396
Location
USA
Thanks for bringing us up-to-date on what became of you! No hyponatremia, but transient hypervolemia that nearly knocked you out. I agree the arterial blood gas would have been a good test to run, along with the chest x-ray. All arterial blood gas tests are handled with expediency.

I'm not going to take any part in this thread any further (not because of you) but because I can't stand to see contributions and rebuttals to my contributions that are contrary to everything I've been taught and learned in medicine. If I come across as sure of myself, it's because doctors and nurses included me in their case discussions when I was working. I've learned to call it when I see it and not be swayed by people who post holy-walls-of-text.

FWIW, I had some drastic changes when my CFS started. I immediately became short of breath (still have that), developed orthostatic intolerance and tachycardia that gradually got better over the years, and got the lactic acid sensation in my leg muscles from climbing a few stairs - still have that too. Like you, I used to work out in a gym, cycled 15 miles at a time and was a competitive swimmer. All that strength and stamina was gone overnight.

I hope you will find a way out of this soon. If I come across the name of a cardiologist with experience in CFS I'll let you know. You're always welcome to PM me. Take care.
 
Last edited:

Gingergrrl

Senior Member
Messages
16,171
I have no idea if this is what is going on with you but it is known that many with ME/CFS have hypercoagulation--I believe this is has been related to the effect of pathogens. I have had it tested at Hemex labs and did indeed have hypercoag. This made getting blood out of me extremely difficult and someone who was not so familiar with hypercoag might have thought I was dehydrated.

When I treated the hypercoag, I did feel better. Just one more thing to ask your doctor! :cool: Sushi

@Sushi I actually did not know that hypercoagulation could be part of CFS and I learn something new every day! I constantly get unexplained bruises on my calves and legs and was wondering if this was a symptom of hyper-coagulation for you? I've had blood tests several times of platelets, PT, PTT, INR, etc, b/c of the bruises and they always come back normal.

Also, when I google "hypercoagulation" it lists blood clots but I have never had a blood clot and when I was in the hospital in Sept, they actually did a lung scan to test for blood clots and it was all clear. Not sure if this is related but wanted to mention it.

I googled "Hemex Labs" (what you mentioned) but it took me to a link for Esoterix Labs. Is that the same place? Also, how did you treat the hypercoagulation? The websites I found listed Heparin? I am making a list of things to ask my doctor but am not going to ask yet as new ideas keep get adding on. Thank you all so much for the feedback and it is already making me feel more hopeful that there could be other things to pursue.
 

halcyon

Senior Member
Messages
2,482
I have no idea if this is what is going on with you but it is known that many with ME/CFS have hypercoagulation--I believe this is has been related to the effect of pathogens. I have had it tested at Hemex labs and did indeed have hypercoag. This made getting blood out of me extremely difficult and someone who was not so familiar with hypercoag might have thought I was dehydrated.
I was interested in having this test a while back until I learned it was $440. :eek:

Is there any (cheaper) lead up testing to this that can show if their panel might be justified?
 

Gingergrrl

Senior Member
Messages
16,171
@CFS_for_19_years

Thanks for bringing us up-to-date on what became of you! No hyponatremia, but transient hypervolemia that nearly knocked you out. I agree the arterial blood gas would have been a good test to run, along with the chest x-ray. All arterial blood gas tests are handled with expediency.

Thank you for your support and I wish I would have known to ask for these tests in the ER but didn't. I was pretty out of it and not feeling well as you can imagine!

I'm not going to take any part in this thread any further (not because of you) but because I can't stand to see contributions and rebuttals to my contributions that are contrary to everything I've been taught and learned in medicine. If I come across as sure of myself, it's because doctors and nurses included me in their case discussions when I was working. I've learned to call it when I see it and not be swayed by people who post holy-walls-of-text.

I wish that you would reconsider and your feedback has been very helpful to me (along with everyone else's.) Although I don't think I could handle any conflict in this thread as it would be too stressful for me right now. But I am open to all kinds of ideas even if they may contradict each other as it gives me things to research and ask about.

FWIW, I had some drastic changes when my CFS started. I immediately became short of breath, developed orthostatic intolerance that gradually got better over the years, and got the lactic acid sensation in my leg muscles from climbing a few stairs - still have that. Like you, I used to work out in a gym, cycled 15 miles at a time and was a competitive swimmer. All that strength and stamina was gone overnight.

Thank you and it is worth a lot.

I hope you will find a way out of this soon. If I come across the name of a cardiologist with experience in CFS I'll let you know. You're always welcome to PM me. Take care.

Thank you and I really appreciate it.
 

halcyon

Senior Member
Messages
2,482
I had done the saline IV three times (each one week apart) and now wondering if the saline somehow built up to the point that I was hypervolemic? Can this happen? I felt great after the first saline infusion (almost cured for 48 hours) and then bad after the 2nd one, and then the disaster reaction after the third. So is it possible that my baseline is hypovolemic but each saline IV pushed my blood volume up? I do not have polyuria and actually have the opposite and do not pee a lot as if my body is trying to hang onto the blood volume (sorry if that is TMI :D.)
Yeah I'm sure it can happen, to people with congestive heart failure (i.e. not you.) It seems like if that's what was happening to you your blood pressure would have gone up steadily and remained there after each infusion, but I have no idea. It seems like your BP is all over the place all the time.

ETA: I noticed much after the fact that you tried to start a chat with me and when I am on my phone, that function doesn't work and I don't see it. So I wanted to apologize to you and anyone else who may have tried to contact me by chat, that unless I am sitting at my computer, I don't actually see it.
No worries I was going to tell you not to waste energy replying, just wanted to send along well-wishes.
 

Gingergrrl

Senior Member
Messages
16,171
I was interested in having this test a while back until I learned it was $440. :eek: Is there any (cheaper) lead up testing to this that can show if their panel might be justified?

I will try to find this out and don't want to pay $440 for a test unless at least one of my two doctors thinks it could be of value in my situation. Which it very well could be and I have no idea yet!
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
I was interested in having this test a while back until I learned it was $440. :eek:

Is there any (cheaper) lead up testing to this that can show if their panel might be justified?

Hemex was bought by Labcorp so it is possible that your insurance would cover the test now. I don't think the other coag tests are going to be very helpful as this test was designed for ME/CFS patients to reveal the particular type of hypercoag that is often found in this patient group. I had the test when it was still an independent lab, and yes, it was costly a few years ago!

Sushi
 

Gingergrrl

Senior Member
Messages
16,171
Yeah I'm sure it can happen, to people with congestive heart failure (i.e. not you.) It seems like if that's what was happening to you your blood pressure would have gone up steadily and remained there after each infusion, but I have no idea. It seems like your BP is all over the place all the time.

My BP did not go up after the three infusions and is consistently low even with the Midodrine. It rarely goes above the 90's over 60's and with Midodrine when the diastolic reaches around 106, that is usually the upper limit. When it reached 116/81 (after the "angina" attack) that was a one-time thing and the highest BP I have ever had in my life! But within an hour it had dropped to 88/59 so it was really confusing.
 

halcyon

Senior Member
Messages
2,482
Hemex was bought by Labcorp so it is possible that your insurance would cover the test now. I don't think the other coag tests are going to be very helpful as this test was designed for ME/CFS patients to reveal the particular type of hypercoag that is often found in this patient group. I had the test when it was still an independent lab, and yes, it was costly a few years ago!
Good to know, thank you. The link you posted mentions that SFM increases blood viscosity. Blood viscosity is a pretty easy test to get, I wonder if it is sensitive enough to indicate ISAC might be a problem? I recently had a blood viscosity test done which came back totally normal.
 

halcyon

Senior Member
Messages
2,482
My BP did not go up after the three infusions and is consistently low even with the Midodrine. It rarely goes above the 90's over 60's and with Midodrine when the diastolic reaches around 106, that is usually the upper limit. When it reached 116/81 (after the "angina" attack) that was a one-time thing and the highest BP I have ever had in my life! But within an hour it had dropped to 88/59 so it was really confusing.
What did your blood pressure run normally when you were healthy?
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
@Sushi I actually did not know that hypercoagulation could be part of CFS and I learn something new every day! I constantly get unexplained bruises on my calves and legs and was wondering if this was a symptom of hyper-coagulation for you? I've had blood tests several times of platelets, PT, PTT, INR, etc, b/c of the bruises and they always come back normal.

I think they found that about 80% of ME/CFS patients had hypercoag. (pulled that out of memory, so probably not really accurate)

I never had clots that I knew of but hypercoag does make you more at risk. Also, "sticky blood" is less efficient at transferring oxygen and nutrients I believe.
I googled "Hemex Labs" (what you mentioned) but it took me to a link for Esoterix Labs. Is that the same place? Also, how did you treat the hypercoagulation? The websites I found listed Heparin?

Yes, that is the name after Labcorp bought it. I had twice daily low molecular weight heparin injections for many months followed by daily nattokinase. Now I believe the protocol includes antiviral treatments too.

The symptoms? Same crap you find in ME/CFS! :oops: I can't remember about bruising--too long ago.

Sushi
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
Good to know, thank you. The link you posted mentions that SFM increases blood viscosity. Blood viscosity is a pretty easy test to get, I wonder if it is sensitive enough to indicate ISAC might be a problem? I recently had a blood viscosity test done which came back totally normal.

Nope, the ISAC tests 4 or 5 different things--much more specific to us.

Sushi