Echocardiogram standing vs. lying flat

[xchocoholic]

The one thing I am struggling with is eating b/c I never feel hungry and have shortness of breath when I eat. I am down to 107 lbs but I can't figure out a solution to this issue. Other than eating, though, is there something else long term that you recommend? .

Hugs. I'm sorry to hear you're struggling so much with all this. If it makes you feel any better imho you're helping the rest of us learn what tests to ask for and what kind of doctors are helpful. Thanks.

Have you looked into why you're having problems eating ? Cdsas, tests for h pylori, other gut pathogens ? Are you still losing weight ? Ketosis makes me feel weak.

I'm not sure how this is working for others but over the last 9 years, I've found avoiding my food intolerances, taking digestive enzymes (Enzymedica brand is the only one that works for me - kow) and yogurt help my digestion the most. Papaya and mango help too but not alone. These plus pineapple contain natural digestive enzymes.

My digestion is a constant challenge and totally dependent on what I eat tho. What I eat plays the biggest role in how I feel. For ex, eating too many greens (I discovered yummy raw kale mango salad at local hfs) is tearing me up right now. And I had to stop eating eggs and onions again a few weeks ago. There are probably enzymes for these that I'm missing.

I noticed you mentioned that you're taking various supplements and wanted to mention that these can cause digestive problems too. I actually had to stop most of mine due to various adverse reactions.

Hope you feel better soon. X

 

[Gingergrrl]

@Sushi

Let me try to clarify: by the long view, I don't mean looking backwards as to how you were functioning six months or a year ago. You have had a major decline in the last year, so you will be functioning at a much lower level now. I mean taking stock of your symptoms every 6 months or so since you have started treatment.

Thank you for clarifying and I hope you don't mind if I ask you a few more questions as I was really not feeling well cognitively yesterday when I was trying to grasp your post. When you say taking stock of my symptoms every six months since my treatment began, do you mean my treatment with Famvir or my entire treatment? (i.e. thyroid hormone, natural anti-virals from ND, beta blocker from first cardio, and a million other steps along the way or only when I started Famvir?) I wasn't sure where to put the six months mark? Also, since I started Famvir, my cardiac/autonomic symptoms have worsened although I am 100% certain it is not because of Famvir and they had already started worsening about two months before I started it.

Probably most of us, even when we found a knowledgeable doctor, spent the first year or so of treatment trying things that "might" or "could" help, but since it is very hard to predict, found that over half of the treatments we tried didn't help or made us feel worse. That is just how it goes with an illness that is so poorly understood.

I understand and totally agree with this. I think I got confused when you said we can become dependent on certain therapies b/c wouldn't that be the case for everyone? Like for me, the beta blocker controls my tachycardia really well (not the shortness of breath or angina) but it virtually eliminates the tachycardia. I take half of the smallest dose once a day but don't view this as being dependent on it any more than I am dependent on Armour Thyroid unless I am just misunderstanding the word? If a treatment helps (even if it were a prescription pain pill for someone with Fibro, which is not me, but just using this as an example) wouldn't this be okay? If my doctor at the end of six months says to take Famvir for another six months, does this switch it from a short term to a long term treatment? I just want to understand both questions.

It is great if you find symptomatic treatment (like Midodrine) that helps. I am not saying that it is bad to find help in these treatments but that, though they will help you to function better until some of the other treatments you are trying (like famvir) begin to help, our goal is to find treatments that deal with the underlying conditions that gave us these symptoms. I was only speaking about symptomatic treatment in the context that, while some of the hopeful ones didn't help you, perhaps you will find that your longer term treatment of underlying issues does help. This would be more significant in the bigger picture.

How do you distinguish between a symptomatic treatment vs the underlying treatment? When I start the nebulized magnesium if it helps me with breathing and angina, couldn't it be treating an underlying issue that is now being corrected? Whereas I view some of the supplements the opposite (like monolaurin, coq10, Vit D, etc) meaning that I do not feel any relief from them in the moment, but I believe that they are helping me in the long term. Famvir is kind of the same (in my mind) that I do not feel anything from it in the moment, but hope it is helping me in the long-term so I take it on faith that it is doing something.

It would seem very unlikely that either your cardiac or autonomic system "were destroyed"--your autonomic system certainly seems to be malfunctioning (dysautonomia), but most dysautonomia is not a primary malfunction of the autonomic system but is caused by something else. It is quite possible that your autonomic functioning will improve as deeper treatments take effect. This has been my experience. There was a time when I couldn't walk across a room either.

Maybe destroyed was too strong a word and I don't mean to sound so dramatic! I just know that even back in July I could drive 2-3x per week and walk from the car inside the bank or pharmacy without the wheelchair while talking and carrying a purse. Now, I can't do any of those things and I am functioning similarly to a patient in heart failure (except that I do not have heart failure) so unless this echo shows diastolic dysfunction or ventricular stiffness, I assume the symptoms to be autonomic. If autonomic issues can so greatly affect my BP, blood volume, etc, to the point that one liter of saline caused pulmonary edema in my lungs (comparable to a heart failure patient per both of my doctors) it seems very scary and extreme to me. I am trying not to let fear take over but it is hard!

I think I was trying to give you some hope that just because recent symptomatic treatments have failed, there is plenty of hope for improvement...but over considerable time.

Thank you and you have given me so much hope and support in the past, I can never thank you enough. That is why I want to understand and take in what you are saying (and hope you don't mind the questions!) Did you mean that saline is a symptomatic treatment or that it could have been long-term (like it is for others) if my body could have tolerated it like a normal person?

Thanks again!

 

[Gingergrrl]

@xchocoholic Thank you for all the feedback and I am not actually having any GI issues right now. I am on a restricted diet, and take two probiotics and a digestive enzyme (which corrected my previous GI issues which used to be horrible.) My issue is that when I eat, I get short of breath and last week eating triggered a horrible angina episode where I almost tried the nitroglycerin but was too scared. So I have become afraid to eat b/c there is really no longer any benefit, enjoyment or pay-off to it for me. I struggle to feel like I am getting enough air and eating makes it worse (although my stomach itself is fine.) Just wanted to clarify in case that makes more sense.

 

[AndyPandy]

Hi @Gingergrrl Sorry you are having such a difficult time.

From time to time, I have shortness of breath which makes eating difficult. I find it hard to get a breath and eat at the same time. It seems to happen when I am very fatigued. When it happens I try to eat really slowly and eat small amounts of foods that don't require much chewing.

For me, it seems it is related to my overall fatigue and illness levels. It happened more often in the early days of the illness.

Have you considered trying soups or smoothies, which can be easier to ingest and don't require chewing?

Best wishes Andy

 

[Sushi]

any positive changes symptomatic treatments might bring, while welcome, are dependent on continuing these therapies.

I think I got confused when you said we can become dependent on certain therapies b/c wouldn't that be the case for everyone? Like for me, the beta blocker controls my tachycardia really well (not the shortness of breath or angina) but it virtually eliminates the tachycardia. I take half of the smallest dose once a day but don't view this as being dependent on it any more than I am dependent on Armour Thyroid unless I am just misunderstanding the word?

I think you misunderstood the way I used the word dependent. I wasn't talking about patients becoming "dependent" upon medications (dependence on a drug definition:

Drug dependence is the body's physical need, or addiction, to a specific agent.

but rather that--the improvements that a patient sees from symptomatic treatments will go away if you stop the treatment. This is not a judgment on the value of symptomatic treatments--symptomatic treatments can greatly change the quality of our lives for the better--just a comment on how they work.

Did you mean that saline is a symptomatic treatment or that it could have been long-term (like it is for others) if my body could have tolerated it like a normal person?

I don't know enough about long term effects of saline treatment to comment other than to say that most patients I have known needed to continue IV saline to continue to get benefit. There are many symptomatic treatments that are given long term. That doesn't necessarily make them "curative," but it does mean they can be very helpful.

I think we are just discussion semantics here. All I was intending was to indicate that there are good reasons to continue to hope even though you are going through a very tough phase.

Best,
Sushi

 

[Kati]

Hi @Gingergrrl i didn't read the whole threat but I wanted to share that early on in my illness, i had cardiac symptoms which made me SOB walking from the couch to the bed on top of being 'vertically challenged '. It was absolutely scary but the most distressing part was that drs thought it was all in my head.

I followed advice i got from fellow patients, when you have symptoms, lay down. If you can do a task laying down or sitting, do so (i brought a char or a stool in the kitchen), I also swept the floor on a swivel chair.

Fortunately these symotoms got better, possibly half dose of atenolol helped this.

Acceptance can be a good thing, and hopefully the OMI group (and others) can figure us out. I think these guys deserve agressive fundraising efforts from us.

Best, Kati

 

[xchocoholic]

Sorry to hear eating has become such a challenge. I get sob sometimes when eating too. And sometimes I get confused when I'm chewing and just swallow my food. It's all autonomic / nervous system related. And mostly happens when I have pem or I've been glutened.

Good to hear you addressed the other digestive issues.

AndyPandy had a great idea. Soups and smoothies can be very satisfying. Bone stock is very healthy. I make a smoothie with a handful of cilantro, 1 banana, 1 kiwi, coconut milk and rice protein.

Fats may help you keep your weight up. Coconut manna is really good on gf toast. And in chicken / acorn squash / peas and curry soup.

Hope you feel better soon.

Tc .. x

 

[Gingergrrl]

but rather that--the improvements that a patient sees from symptomatic treatments will go away if you stop the treatment. This is not a judgment on the value of symptomatic treatments--symptomatic treatments can greatly change the quality of our lives for the better--just a comment on how they work.

Hi again and hope I am not driving you nuts! I guess the only thing I am still trying to understand are which are the symptomatic treatments vs. the underlying (or non-symptomatic?) ones. I am struggling to find the right vocabulary. Maybe if I give examples you guys can tell me which category it belongs in. If I take supplements that give me no symptomatic relief (like Monolaurin, Coq10, Vit C, Vit D, Epicor, etc.) but I am told these will help me down the line, are they in the underlying or long-term category like Famvir? Versus things like Atenolol and Midodrine where I actually feel the positive effect that same day? Also, with electrolytes- my husband is insisting that I drink water and take electrolytes and I don't feel the benefit but am wondering which category these belong to? I know what I am trying to ask but think I am not doing a good job with it!

From time to time, I have shortness of breath which makes eating difficult. I find it hard to get a breath and eat at the same time. It seems to happen when I am very fatigued. When it happens I try to eat really slowly and eat small amounts of foods that don't require much chewing.

For me, it seems it is related to my overall fatigue and illness levels. It happened more often in the early days of the illness. Have you considered trying soups or smoothies, which can be easier to ingest and don't require chewing?

@AndyPandy, I bolded that line b/c it seems like everyone keeps telling me that they had my symptoms in the early days of their illness and then they went away or improved. I should do a poll on this at some point and wondering how long it took (in most cases) for these symptoms to improve. As far as smoothies and soups, I try to eat them as much as I can (especially soup b/c I am always cold!)

@Kati

I wanted to share that early on in my illness, i had cardiac symptoms which made me SOB walking from the couch to the bed on top of being 'vertically challenged '. It was absolutely scary but the most distressing part was that drs thought it was all in my head.

I remember you telling me this before but forgot how long it took you for these symptoms to go away or improve? I am blessed that my current doctors believe me that it is not in my head but they are struggling to figure out the cause or how to improve it (unless ME/CFS is the cause and there is nothing more to be done?)

Fortunately these symotoms got better, possibly half dose of atenolol helped this.

The 1/2 pill Atenolol per day (12.5 mg) helps me greatly and virtually eliminates the tachycardia portion which I am very grateful for.

Acceptance can be a good thing, and hopefully the OMI group (and others) can figure us out. I think these guys deserve agressive fundraising efforts from us.

I totally agree with you and am actively involved with fundraising for OMI and the End ME/CFS Project. They are working so hard on every level to try to find a cure.

 

[Sushi]

If I take supplements that give me no symptomatic relief (like Monolaurin, Coq10, Vit C, Vit D, Epicor, etc.) but I am told these will help me down the line, are they in the underlying or long-term category like Famvir? Versus things like Atenolol and Midodrine where I actually feel the positive effect that same day?

The difference I am trying to point to doesn't have anything to do with how long you take a supplement/drug/treatment or how soon you feel the effect, but rather what that treatment is doing. Some treatment approaches are attempts to treat underlying causes, like famvir to try to deal with viral replication.

Midodrine would be in the category (as I see it anyway) of providing symptomatic relief without having an effect on what might have originally caused the symptom. So it is great to take midodrine if it helps you function but it is not likely to be "curative," i.e. you will have the same symptoms if you stop taking it. Of course our goal is to treat causative factors so we won't need drugs like midodrine.

Sushi

 

[xchocoholic]

Hi @Gingergrrl .

Are you familiar with Dr Terry Wahls story ? I think she explains treating symptoms vs healing our bodies well. She has various interviews on the web.

Hth.. x

 

[Kati]

Hi again and hope I am not driving you nuts! I guess the only thing I am still trying to understand are which are the symptomatic treatments vs. the underlying (or non-symptomatic?) ones. I am struggling to find the right vocabulary. Maybe if I give examples you guys can tell me which category it belongs in. If I take supplements that give me no symptomatic relief (like Monolaurin, Coq10, Vit C, Vit D, Epicor, etc.) but I am told these will help me down the line, are they in the underlying or long-term category like Famvir? Versus things like Atenolol and Midodrine where I actually feel the positive effect that same day? Also, with electrolytes- my husband is insisting that I drink water and take electrolytes and I don't feel the benefit but am wondering which category these belong to? I know what I am trying to ask but think I am not doing a good job with it!



@AndyPandy, I bolded that line b/c it seems like everyone keeps telling me that they had my symptoms in the early days of their illness and then they went away or improved. I should do a poll on this at some point and wondering how long it took (in most cases) for these symptoms to improve. As far as smoothies and soups, I try to eat them as much as I can (especially soup b/c I am always cold!)

@Kati



I remember you telling me this before but forgot how long it took you for these symptoms to go away or improve? I am blessed that my current doctors believe me that it is not in my head but they are struggling to figure out the cause or how to improve it (unless ME/CFS is the cause and there is nothing more to be done?)



The 1/2 pill Atenolol per day (12.5 mg) helps me greatly and virtually eliminates the tachycardia portion which I am very grateful for.



I totally agree with you and am actively involved with fundraising for OMI and the End ME/CFS Project. They are working so hard on every level to try to find a cure.

Hi @Gingergrrl I cannot tell you how long it took. Months. Perhaps adapting my activities and pacinghelped a bit. But please don't take my word or anybody's word for that matter, since each one of us is different. you have hired some fine physicians to guide you and I am so pleased that you did. Also do not disregard your symptoms as not important or not worthy to be investigated or treated medically. i am glad you're getting an echo. Things need to be ruled out.

And in the end if major diseases and conditions have been ruled out and what's left is acceptance of the moment, then learning to live within the constraints 'for the moment' can be a springing board to hop onto the next stone.

 

[Gingergrrl]

Warning: Long post...

I wanted to give an update re: my echo today and was waiting until I got home. My cardio had talked to the head of the outpatient imaging center and she performed the echo herself! He'd never gotten back to me directly re: the standing echo and I was afraid he would think I was crazy but he told her (I will call her "L") that he wanted her to do it. L told me that although they are rare, that she had heard of both sitting and standing echos before, but the picture quality is not as good and she couldn't make me any guarantees. I told her I was so appreciative of the effort and totally understood. She said that this was a learning experience for her and that it could even help other patients in the future which made me feel good.

So L did the regular supine echo and then another whole standing echo. It is difficult for me to stand perfectly still in one spot (and I start to feel like I could fall over!) but I did my absolute best. I had to pay for the echo as if I didn't have insurance (even though I do ) b/c my cardio does not accept the new Blue Shield PPO that I got through Covered CA. It turned out to be $324 but in a way I got two echos for the price of one (supine & standing) and I felt it was well worth it. I got the info so I can switch insurance plans in Jan to the one Covered CA plan that they do accept.

After the echo, I met with my cardio but he did not tell me the results. He said he had glanced at the echo and all the pictures came out clear (including the standing pictures!!!) but he wanted his colleague who is the top echo specialist to look at it. I know my cardio clearly also knows how to interpret an echo (and he had said they were looking for ventricular stiffness and diastolic heart failure in light of what happened with my fluid overload with the saline IV and the severity of my daily symptoms.)

So I asked him if he could just give me a hint if it was good or bad but he kept a complete poker face and said he would call me tomorrow after consulting with his colleague. I really was not sure how to interpret this? It could mean that he saw no issues and my echo was perfect but he didn't want to tell me this without confirmation OR it could mean he saw diastolic heart failure and I am going to die but he also didn't want to tell me this without confirmation. I will be awake torturing myself with this all night until he calls me tomorrow.

Prior to him even seeing the echo he talked to me about other issues and still wants me to switch from Midodrine to Droxidopa (Northera.) We had discussed this at great length at the last visit but he didn't remember and wanted me to get onto the waiting list for Droxidopa even if I don't end up taking it. It is extremely expensive but he said it is paid for by some foundation. So I signed the consent form with the nurse (who didn't seem to think there was a foundation who paid for it?!!) but made it clear to the nurse that I was still undecided about this med.

My cardio also wanted me to increase my Atenolol (from 1/2 pill at night to another 1/2 pill in the morning) which adds up to one pill per day of the lowest dose. He thought it might improve my tachycardia and shortness of breath and I am willing to give this a try.

Of course if I have heart failure, I don't know if any of this matters? But if the echos are totally normal, then I fully accept that I have severe dysautonomia from ME/CFS and will move forward in this direction. It is possible I also have microvascular angina but my cardio is still undecided about this. I guess if I do, then this is a separate issue from ME/CFS (which seems strange) or it is possible that it is still from low blood volume/profusion and if I can somehow correct the dysautonomia, then I can correct the whole thing?

I asked my cardio again about a potential viral cause of my symptoms (like myocarditis) but he felt adamant that this was not the case and said there is no visible evidence of this.

Lastly, I guess I am throwing this in for humor, my cardio asked me again if I have been able to exercise? He doesn't know anything about ME/CFS but I told him that I can only walk a few feet without a wheelchair, I can only shower once a week with a shower chair, and I need help with basic activities of daily living (like preparing food.) I think that was the moment that he got it that I am not able to exercise!!!

 

[Sushi]

diastolic heart failure

I may have missed something...did someone suggest that you might have diastolic heart failure rather than diastolic dysfunction? Many of us have been diagnosed with diastolic dysfunction which, we are told, in ME/CFS is reversible.

Best wishes this evening,
Sushi

 

[halcyon]

Nerve wracking to say the least, but it seems unlikely that between your last echo and this one that you would suddenly develop heart failure right? Also a really good sign that he isn't considering myocarditis as a possibility. That's really cool that they were able to give you the standing and supine echo and it will be very interesting to see if there is any striking difference between the two.

You should have told him your exercise regime consists of getting out of bed to go to the bathroom and eat, a couple reps a day.

 

[Gingergrrl]

I may have missed something...did someone suggest that you might have diastolic heart failure rather than diastolic dysfunction? Many of us have been diagnosed with diastolic dysfunction which, we are told, in ME/CFS is reversible.

Best wishes this evening,

My cardio used the word "diastolic heart failure" but was NOT saying that I had it and used the word prior to the echo as one of the things he was checking for in light of my reaction to one liter of saline.

Nerve wracking to say the least, but it seems unlikely that between your last echo and this one that you would suddenly develop heart failure right? Also a really good sign that he isn't considering myocarditis as a possibility. That's really cool that they were able to give you the standing and supine echo and it will be very interesting to see if there is any striking difference between the two.

You should have told him your exercise regime consists of getting out of bed to go to the bathroom and eat, a couple reps a day.

@halcyon You are totally right in the sense that I had an echo in August by my former cardio which was an exercise echo. Although it showed ischemia on the exercise ekg portion (which has now been ruled out by my tests in the hospital) it showed no problems with the echo portion (both before and after the treadmill test.)

Although that echo was only supine and was quicker and much less thorough than the one today, I would still think it would pick up on diastolic heart failure! But I got so confused after reading some speeches by Dr. Cheney that said it can only be picked up by standing echo and that many cardios are only looking for systolic dysfunction and ejection fraction (which are for sure normal with me) and can miss the diastolic issues.

And you are right, the extent of my exercise is walking from my bedroom to either the bathroom or kitchen, a few reps per day LOL. If I need an extreme workout then I wash my hair by myself once a week LOL.

 

[WillowJ]

hi, sorry you are having trouble eating and all (that's miserable, I know). I hope the cardiologists figure out something useful. Take care.

 

[Gingergrrl]

Good news... My cardio called me tonight after consulting with his colleague re: my supine and standing echocardiograms and said that I have no ventricular stiffness and no diastolic dysfunction of any kind. He said this rules out any functional cardiac problem and that although I am still very ill, my problems are all autonomic (unless I am also having microvascular angina/spasms which he is still uncertain about.)

I was very happy with this news because after the incident with the fluid overload/flash pulmonary edema from one liter of saline, I really started to worry that I may have some kind of undiagnosed congestive heart failure. My doctors were worried too and now this can be ruled out. In addition, I had some improvement today with the increased Atenolol (this was prior to receiving the phone call about the echo) and was able to take a shower! I have only been able to take a shower 1x/wk but have now taken a shower twice this week b/c I think increasing the Atenolol is making it a little easier to breathe with less chest pain. I still used the shower chair b/c I get very weak and dizzy in the shower but I noticed a slight improvement.

I really want to thank @Sidereal (and I hope she does not mind!) but she is the one who sent me the info about the standing echo and how this is more effective in catching diastolic dysfunction. It led me to do a lot of research which I was able to clearly present to my cfs dr and cardio and they advocated for me to get this test. Without this test, I would have always wondered if I really had ME/CFS or some kind of undiagnosed heart failure and now I know for sure. Even though I have a long road ahead, I feel very grateful for this good piece of news and very thankful to Sidereal and everyone who helped me research this test and also to my doctors who helped me to get this test.

 

[xchocoholic]

Hi @Gingergrrl

Great news. I'm curious about how this lines up with what Dr Cheney says about pwcs tho. Not that I'm a Cheney expert but I thought he said the results of a standing echo showed heart problems.

Fwiw, from my experience, dysautonomia and me/cfs diagnosises can be used interchangeably by some doctors. Since me/cfs can be a wastebasket dx, dysautonomia can be overlooked and the impact is under appreciated. I dx'd my own POTS because no one had looked even after I was consistently positive for OH since 1992.

You clearly have dysautonomia and dysautonomia can have several triggers including viruses. Did you get the chance to post your questions on Dinet ? The last time I was there, they had some informed members there. It was common for members to have been dx with me/cfs.

Tc .. x

Ps. I hope this doesn't sound argumentative. I don't remember where but I've seen people post recently that they view someone asking them questions as being argumentative.

I'm just trying to understand this from a medical viewpoint. From my experience, Me/cfs can be a wastebasket dx and patients have to find their own real diagnosises.

 

[Gingergrrl]

@xchocoholic

Great news. I'm curious about how this lines up with what Dr Cheney says about pwcs tho. Not that I'm a Cheney expert but I thought he said the results of a standing echo showed heart problems.

I want to clarify that even though I have been researching Cheney and this procedure, I am in no way an expert on him or how he would interpret my results. I have never met him and he knows nothing about my specific case so I don't want to mislead anyone. The problem I encountered in my research on Cheney was that he gives a lot of speeches and anecdotal evidence but does not publish studies with statistics.

This is not a criticism of him as his focus has been on direct patient care and trying different medications. It's just that in different speeches that he gave that I read, he quoted different numbers as to how many of his patients had diastolic dysfunction and how he assessed this. It also appeared that his patients with DD, had been ill for a longer length of time than I have so if I were to repeat this test in 5-10 years (assuming I am still as ill) then I may fit into his description. But I really do not know!

Fwiw, from my experience, dysautonomia and me/cfs diagnosises can be used interchangeably by some doctors. Since me/cfs can be a wastebasket dx, dysautonomia can be overlooked and the impact is under appreciated. I dx'd my own POTS because no one had looked even after I was consistently positive for OH since 1992.

In my case they are not being used interchangeably. My cardio simply does not know anything about ME/CFS and was the first to admit this himself. He did not understand the role that a virus could play in ME/CFS or in dysautonomia until he spoke on the phone with my ME/CFS doctor. He viewed my issues through a cardiac lens which made sense and really is what I wanted him to do b/c if I had a separate cardiac problem (which seemed unlikely to me but of course possible) then I wanted to find it and know.

My ME/CFS doctor of course saw the bigger picture which is that I had a viral re-activation of EBV and VZV in Jan 2013 and I have progressively gone downhill ever since. My body lacks any ability to create energy on demand and I have a clear metabolic and mitochondrial issue. When I over-do it (such as walking for more than a few minutes, or trying to do a load of laundry, or any exertion, I have severe PEM.) My NK cell functioning is only five (and my CFS dr said it should be at least 50, if not 100) so my immune system is not able to fight the re-activation of EBV on it's own.

I constantly felt a "Sickly fatigue" in which I literally felt as if I had mono all over again. I felt feverish alternating with freezing cold chills and then burning hot. It wasn't until I started on Famvir that this sickly type of fatigue disappeared and now I have a more general fatigue. My body still cannot create energy on demand and I have to operate within a very strict energy envelope or I get PEM.

I have aggressively treated some of my other symptoms such as the GI disturbance which prior to working with my former ND involved constant almost 24 hour nausea and alternating diarrhea/constipation. With a restrictive diet to reduce inflammation, two probiotics, digestive enzymes, several months of GI repair powder, etc, my gut has really healed so I no longer focus on this symptom but for over a year it was brutal.

My other main symptom, which has taken a back seat due to the cardiac/autonomic stuff, is that I continue to have severe noise intolerance. I can no longer listen to music (which has been soul crushing to me as I used to go to several concerts per month) and I can only focus on one conversation or sound at a time. Anything else sounds like a wall of televisions in a store and I don't know where to put my attention. I can only read if there is total silence and need to wear noise canceling headphones. I also can no longer tolerate smells or odors and everything is much stronger for my brain to process than it was prior to getting ill.

Then I just have a variety of weird symptoms like constant unexplained bruises on my legs and calf pain, headaches, sleep disturbance (which the last few nights was really bad again) but in general I have been able to greatly improve my sleep with the right combination of meds and supplements, etc.

You clearly have dysautonomia and dysautonomia can have several triggers including viruses. Did you get the chance to post your questions on Dinet ? The last time I was there, they had some informed members there. It was common for members to have been dx with me/cfs.

I have not had a chance to look at Dinet yet but it is still something that I am planning to do. I really want to get a sense of which meds are being used over there as my cardio wants to to try Droxidopa vs. Midodrine.

I hope this doesn't sound argumentative. I don't remember where but I've seen people post recently that they view someone asking them questions as being argumentative.

Not at all and I do not ever mind people asking me sincere questions. I'm not sure if I know which post you are referring to, but if I do, it had nothing to do with you!

I'm just trying to understand this from a medical viewpoint. From my experience, Me/cfs can be a wastebasket dx and patients have to find their own real diagnosises.

I agree that it is a wastebasket diagnosis and after four doctors (former PCP, former ND, former cardio and my current Endo) all told me I had "CFS" I traveled to see a specialist at OMI who performed extensive blood testing and a thorough history and exam and said that I was a classic case of ME/CFS with no doubt in his mind. He said that a big part of ME/CFS is a "viral re-activation due to immune system impairment" which is exactly what I had.

Believe me, I would like it to just be "POTS" b/c sometimes people with autonomic issues can even exercise in a seated position but sadly this is not the case for me. Any exertion, even seated, causes me tachycardia and my initial tachycardia was occurring in my sleep up to 170 bpm. My biggest problems have been with shortness of breath, chest pressure, low BP, and low blood volume.

The all encompassing issue is that I can no longer create any energy on demand for even the simplest task like cutting vegetables while seated at a table. Trying to do so causes severe fatigue and shortness of breath. My arms are also very weak and if I force myself to use my arms, I end up with neck and shoulder pain and headaches for days. I just hate to use the word "fatigue" b/c I feel it minimizes what I am going through which is total body exhaustion or the ability to regulate the most basic body functions like my BP and heart rate.

I hope that explains things better and I don't mind at all that you asked. If I don't answer right away, it is only b/c I (hopefully!) have been able to go back to sleep!

ETA: In case this helps, a few times in other posts you asked me about Celiac disease but I have been tested for this and it has been ruled out as I have no markers or antibodies for Celiac. But I have been gluten free for almost one full year (in Jan!) due to having Hashimoto's Disease and to hopefully reduce overall inflammation.

 

[jimells]

Good luck maybe your autonomic cardio is curious ...

A curious doctor? You're so funny...

Seriously, I think curiosity is mostly ground out of doctors before they're allowed to have a license. And with the endless pressure to increase patient turnover and revenue, they're probably forgotten the concept.