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    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.

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Echocardiogram standing vs. lying flat

xchocoholic

Senior Member
Messages
2,947
Location
Florida
I think what you're saying is that you trust your me/cfs doctor to properly dx and treat you. That's a good thing and I'm happy for you. This concept is completely foreign to me because of all the controversy over how cfs is diagnosed, how inaccurate cfs research has been and learning about functional medicine. And the fact that my gluten intolerance / celiac gene was missed.

At one point the definition of dysautonomia included most of what we see in pwcs, symptomwise, but I quickly looked at Dinet and couldn't find it. It used to be on their homepage. I'm out of time today tho. I saw an interesting article on post viral dysautonomia on Dinet.

Hee hee. I'm really not as obsessed with gluten as it seems. I just use it as a point of reference for food intolerances. There are other easy diy treatment options. I see diet as a key treatment tho.

Hope you got back to sleep. Tc .. x

Eta. I'm not criticizing those who have worked on or are currently working on me/cfs. I'm just completely overwhelmed and frustrated by the current status of me/cfs. My perspective seems realistic at this point.
 
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Gingergrrl

Senior Member
Messages
16,171
@Gingergrrl I'm very impressed you were able to get the standing echo. You are obviously a very persuasive person.

Sending good thoughts towards the Left Coast...

@jimells Thank you so much and that is very sweet of you! I think I am a persistent person b/c so much of my former career involved advocating for my patients within a very complex medical system with doctors, insurance companies, all types of beauracracy, as well as their families & support systems. But I can honestly say that it is much harder to advocate for myself while so ill than to do it for others back when I was healthy. But I am still very motivated to get better in spite of my moments of despair and usually feel that at this point, I have nothing to lose in trying.
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
@xchocoholic, is coconut manna the same thing as coconut oil? That soup sounds really good!

No. Manna is coconut meat plus oil. I buy Nutiva brand. A little goes a long way.

The soup has been a big hit. Too much so. I keep getting requests to make it. Lol. Imho using a fresh whole chicken makes a big difference. I use a 1 tbsp of Patak's mango chutney in a whole pot for extra flavor.

Tc .. x
 
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Gingergrrl

Senior Member
Messages
16,171
Have you tried the liquid nutritional supplements? His doctor recommended Ensure muscle building formula for my underweight dad.

@Little Bluestem The liquid supplements all seem to contain at least one of the ingredients that I am not supposed to eat. I had a supplement drink called Orgain that I loved but I am no longer able to drink it b/c it contains dairy and whey products.

My former ND had put me on a restrictive diet back in June due to results of high inflammation to foods on sensitivity test (but I am not actually allergic to any these foods.)

Right now my issue is not my stomach but trouble breathing. I had increased my Atenolol (per my doctor) and the first day it worked great and I could walk better and breath and even took a shower!

But then like everything else my body finds a way to go back to its incorrect version of homeostasis and yesterday my BP was only 82/52 even with two Midodrines. I was dizzy and so out of it that it was hard to follow conversations. my husband had to force me to drink Pedialyte and salt stick tablets and finally eat something.

I am lowering the Atenolol to only 1/4 tablet each for today and then maybe 1/4 and 1/2 for Sunday. I need them to control the tachycardia, breathing and chest pressure but it won't work if they are dropping my BP too much.

This is all very frustrating to me and if I were well, I would be out right now with my family today for a fun event for my step-daughters school. But instead I am at home and my parents are here to assist me and take care of my dog. I feel like a burden to everyone and wish my autonomic system could re-boot so I could function again.

Maybe I should just drink those nutritional drinks temporarily and not worry about eliminating dairy so I do not lose any more weight?
 

Sidereal

Senior Member
Messages
4,856
Beta blockers make me feel quite good for a day. Second day is ok. Then on day three I crash with low BP and my energy goes to zero and I can hardly stand up. I think the hyperadrenergic state in this illness is a compensation for the low energy state. Any artificial attempts to knock down the tachycardia result in reduced functionality for me.
 

Gingergrrl

Senior Member
Messages
16,171
Beta blockers make me feel quite good for a day. Second day is ok. Then on day three I crash with low BP and my energy goes to zero and I can hardly stand up. I think the hyperadrenergic state in this illness is a compensation for the low energy state. Any artificial attempts to knock down the tachycardia result in reduced functionality for me.

@Sidereal In my case, every time I have tried to stop the beta blocker, within a few days my HR will spike up to the 160's or 170's (either in my sleep or a POTS reaction to when I stand up) and it is literally unbearable. The tachycardia was the first symptom I experienced and it is by far the most debilitating. I have tried non beta blockers but was not able to tolerate them.

The low dose Atenolol (1/2 pill per day) completely controls the tachycardia. When I increased to two 1/2 pills per day, my ability to walk and breath without chest pain improved. Unfortunately, by the third day it dropped my BP to 82/52. Right now my BP is 97/67 and I feel pretty good but when it drops below 90/60 it is really hard to function.

I am trying to find the perfect combination and amount of meds that will control my symptoms without dropping my BP too low. I know it can be done but is going to take more persistence and tinkering on my part (and I run all my ideas by my doctor.)
 

WillowJ

คภภเє ɠรค๓թєl
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4,940
Location
WA, USA


It depends on why you took out the dairy, and what alternatives you have. If you took it out despite having no symptoms at all, and you feel no better off it, and can find no healthier fats to replace it with, it could be worth adding it back in.

As you may know, your body will not make the enzyme needed to digest the milk sugar while you are off dairy, and it may take a 2-3 days to adjust to having it back in your diet--but if you are having problems beyond a few days, or the problems are not merely indigestion/ GI troubles, you might be sensitive or allergic.

Instead of using something like Ensure, I was able to find a safe rice protein (in powder form), which I mix with almond milk, coconut milk, dairy milk, or whatever I am using at the time. You might also be able to use pea protein or a mixed protein. Whatever you can find that looks safe for you.

Electrolyte drink and florinef helped more with my weight, though, since mine at that point had a lot to do with dehydration.

Hang in there. I understand feeling like a burden and missing out on things and thinking everything is wrong. Please don't blame yourself. It is not your fault.
 

Gingergrrl

Senior Member
Messages
16,171
@WillowJ

It depends on why you took out the dairy, and what alternatives you have. If you took it out despite having no symptoms at all, and you feel no better off it, and can find no healthier fats to replace it with, it could be worth adding it back in.

Since I eliminated dairy back in June, I have had it on 2-3 occasions and seemed to have no problems with it. But I never had any noticeable problems to begin with and eliminated it b/c my former ND said I have off the charts levels of inflammation to dairy/cheese/casein etc, on the food sensitivity test. Prior to this I had eaten dairy all my life. But the entire protocol fixed my GI issues, and I assume reducing the inflammation helps my immune system, so I am trying to stick with the no dairy for that reason.

Instead of using something like Ensure, I was able to find a safe rice protein (in powder form), which I mix with almond milk, coconut milk, dairy milk, or whatever I am using at the time. You might also be able to use pea protein or a mixed protein. Whatever you can find that looks safe for you.

I haven't been able to tolerate the taste of any of the other milks (almond, coconut, rice milk, etc) and just can't get past the taste.

Electrolyte drink and florinef helped more with my weight, though, since mine at that point had a lot to do with dehydration.

I tried Florinef for three months and it never helped me and just gave me bad headaches. But drinking the electrolyte drinks has been very helpful for me. Both yesterday and today I have forced myself to drink two cups of Pedialyte (diluted with a little water!) and also drinking plain and sparkling water, etc, along with salt stick tablets and adjusting my Atenolol dosage. I have felt significantly better the last two days and I am praying that this improvement will last (although it never does :aghhh:.)

Hang in there. I understand feeling like a burden and missing out on things and thinking everything is wrong. Please don't blame yourself. It is not your fault.

Thank you so much for your support, Willow, and I really appreciate it. I am trying to tell myself that I am not a failure and am just ill but sometimes it is so hard!
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
My reaction to dairy is shiners. I never ever get any digestive problems from dairy. Even as a celiac, I actually get neuro symptoms from gluten more readily than digestive. The Leap food intolerance guide explains this.

I know what you mean about the taste of some dairy milk alternatives. It took a long time for my taste buds to get used to dairy alternatives.

I prefer the ones that need to be refrigerated. So Delicious and Silk make the ones I like. So Delicious makes some of the best ice cream I've ever had. Better than dairy. That would put weight on you. :)

Tc ... x
 

Gingergrrl

Senior Member
Messages
16,171
My reaction to dairy is shiners. I never ever get any digestive problems from dairy. Even as a celiac, I actually get neuro symptoms from gluten more readily than digestive. The Leap food intolerance guide explains this.

I know what you mean about the taste of some dairy milk alternatives. It took a long time for my taste buds to get used to dairy alternatives.

I prefer the ones that need to be refrigerated. So Delicious and Silk make the ones I like. So Delicious makes some of the best ice cream I've ever had. Better than dairy. That would put weight on you. :)

@xchocoholic What is shiners? Sorry if this is an obvious question :D!

I don't think I will ever get used to any of the milk alternatives but the last 2-3 days it has been a lot easier for me to eat regular food (sticking with my no gluten, dairy, etc, strict diet.) We found an ice cream by "Coconut Bliss" that is non-dairy and sweetened with Agave that is really good. I cannot tolerate any of the stuff sweetened with Stevia b/c of the horrible after-taste and Stevia can actually lower your BP which is the last thing I need.
 

Gingergrrl

Senior Member
Messages
16,171
I've tried coconut milk (and don't like it!) but have never tried hemp milk or the brand you mentioned.
 

WillowJ

คภภเє ɠรค๓թєl
Messages
4,940
Location
WA, USA
I've tried coconut milk (and don't like it!) but have never tried hemp milk or the brand you mentioned.
But the entire protocol fixed my GI issues, and I assume reducing the inflammation helps my immune system, so I am trying to stick with the no dairy for that reason.
That makes total sense why you would stick to this. It's possible it's some one or some few foods from the protocol, but I've never really looked into "x foods are inflammatory in everyone" hypothesis to see what it's based on, so without having any evidence for or against, I'll go with your ND (all the NDs?) and say that's possible, too.

I figure out my trouble spots by trial and error (they did correlate to a good degree with my ND's squalling machine, though... the machine even said I could have table sugar, which has never bothered me, and this result made my ND unhappy! :D ).

I haven't been able to tolerate the taste of any of the other milks (almond, coconut, rice milk, etc) and just can't get past the taste.
Yes, they all have different tastes and some of them have an off flavor. I can never get used to rice milk (although have occasionally found an horchata I liked well enough, so I think it's possible). Even when I make coconut milk hot chocolate and it's a little nice, I miss the flavor of milk in there. So I don't really make hot chocolate or drink any substitute milks, not so much because the products are bad but because they are not dairy milk, which is what I wanted. But for baking, or for something I think I really have to have like a protein shake, I'll use an alternate.

I tried Florinef for three months and it never helped me and just gave me bad headaches. But drinking the electrolyte drinks has been very helpful for me. Both yesterday and today I have forced myself to drink two cups of Pedialyte (diluted with a little water!) and also drinking plain and sparkling water, etc, along with salt stick tablets and adjusting my Atenolol dosage. I have felt significantly better the last two days and I am praying that this improvement will last (although it never does :aghhh:.)
Everybody is different as far as medicines (can't recall if I mentioned mine before; if I'm repeating myself, sorry about that). I can't use atenolol, for instance. I'm happy that your hydration is helping. I do hope it sticks. At some point, it's most likely that something will stick, at least for a few months or years.


Thank you so much for your support, Willow, and I really appreciate it. I am trying to tell myself that I am not a failure and am just ill but sometimes it is so hard!

You are such a kind and encouraging person, you could never be a failure, Gingergrrl.

I understand that it is hard, though. So many years in and I have to tell myself the same thing. Hopefully we will get better treatments soon. I think this is a reasonable hope.
 
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I've tried coconut milk (and don't like it!) but have never tried hemp milk or the brand you mentioned.
Almond milk is nicest for drinking straight, or with cereal. I prefer coconut milk for things which are supposed to be somewhat sweet and creamy, like ice cream and baked items
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
@xchocoholic What is shiners? Sorry if this is an obvious question :D!

I don't think I will ever get used to any of the milk alternatives but the last 2-3 days it has been a lot easier for me to eat regular food (sticking with my no gluten, dairy, etc, strict diet.) We found an ice cream by "Coconut Bliss" that is non-dairy and sweetened with Agave that is really good. I cannot tolerate any of the stuff sweetened with Stevia b/c of the horrible after-taste and Stevia can actually lower your BP which is the last thing I need.

Shiners are black eyes. Mine get quite pronounced when I eat dairy. The customfitnutrition site has a list of common symptoms associated with food intolerances. My gp gave me the list in 2005. I sure could've used that list in 1990.

I haven't tried Coconut bliss yet because I like So Delicious and it's very fattening. I'm not a stevia fan either.

Once you've been eating non traditional food alternatives for a few years you won't like the taste of some of the foods you used to eat. Esp if you react immediately to an old food.

Manufacturers of non traditional foods are getting better at making their foods better tasting. The selection just 5 years ago was terrible and some of the old tasteless garbage is still available. Bleh ! Making your own is always best but who has the time or energy.

The only non refrigerated non dairy milk I like is organic non enriched rice milk. We're all different tho.

Tc .. x
 

Gingergrrl

Senior Member
Messages
16,171
@WillowJ

That makes total sense why you would stick to this. It's possible it's some one or some few foods from the protocol, but I've never really looked into "x foods are inflammatory in everyone" hypothesis to see what it's based on, so without having any evidence for or against, I'll go with your ND (all the NDs?) and say that's possible, too.

Just to clarify, my former ND didn't actually say that certain food are inflammatory for everyone across the board, but that based on my food sensitivity test, that certain foods were extremely inflammatory for me (and sadly all dairy was in this category.)

I figure out my trouble spots by trial and error (they did correlate to a good degree with my ND's squalling machine, though... the machine even said I could have table sugar, which has never bothered me, and this result made my ND unhappy! :D ).

For me cane sugar was sadly in the bad category, too, but I am allowed to have honey, agave, and other sweeteners and all fruit is okay. My diet was incredibly strict for about 5-6 mos and now I have been able to add some foods back in but dairy remains on the forbidden list at least for now.

My husband makes smoothies and the one that is my favorite is with coconut milk, almond or peanut butter, bananas, honey and ice. I can't stand coconut milk plain but in a smoothie or certain ice creams, it is okay.

Everybody is different as far as medicines (can't recall if I mentioned mine before; if I'm repeating myself, sorry about that). I can't use atenolol, for instance. I'm happy that your hydration is helping. I do hope it sticks. At some point, it's most likely that something will stick, at least for a few months or years.

Willow, I think I do remember you telling me that you couldn't take Atenolol but that Florinef helped you and we are exactly opposite in this regard. For now my new Atenolol plan has been great (1/4 tablet AM and 1/4 PM) along with increasing fluid intake. I am really hoping this sticks like you said.

You are such a kind and encouraging person, you could never be a failure, Gingergrrl.

Thank you and I really appreciate it.

I understand that it is hard, though. So many years in and I have to tell myself the same thing. Hopefully we will get better treatments soon. I think this is a reasonable hope.

It IS a reasonable hope and we all deserve better treatments. It is so easy for me to inherently know that other ME/CFS patients are not a failure when they have to rest and can't do an activity but when it comes to myself, it feels like a failure. But I try not to think that way!