MTRJ75

Most standard cardiologists will just tell you that the heart is healthy and it pumps blood the way it should, so their job is done. But it's the mechanisms surrounding the heart that are broken. It's like putting a new engine in an old car where everything else is broken. The engine works fine, but the car still won't function properly. 

And since specialists refuse to communicate on problems that cross systems, you end up in an endless cycle. 

This is one of my worst symptoms still (not necessarily the sweating itself, but all else that comes with it) and can be triggered by almost anything. Sometimes, I would expect this type of reaction when I overdo it, but not from simple things like phone calls or just leaning forward to write something. 

Isn't heart failure more of a blockage than volume thing? 

Last time I went to the doctor, I saw on the computer screen something about chronic kidney disease. Nobody had ever mentioned this to me, but it must be something that showed up on blood work at some point. I'm wondering if that was a blood volume thing also. I do notice there's a large difference in my bloodwork results all around when I go in after a glass or two of water an hour or so before vs not drinking anything and probably being a bit dehydrated. 

@MikeO Cevimeline/Evoxac

@Pistol That's a joke from a very early South Park episode. 

20 hours ago, Pistol said:

@MTRJ75 What is your theory? I would be interested in hearing about it!

Easy...

1 - Low Blood Volume

2 - ???

3 - PVCs

But more seriously, dehydration seems to be one of the things that increased them for me. I'm most prone to them right before I take my Sjogren's med a couple times per day, when my throat feels the most dry. Perhaps less blood available for the heart to continuously pump correctly. 

What kind of specialist deals in blood volume? Who would even get this done? I have a theory about low blood volume and PVCs. Don't know how I'd prove it though. 

This is all good to know. I've never been offered IV with the procedure before and despite waking up extremely thirsty each time, was only allowed ice chips. Not even a cup of water. 

I'll be sure to let them know I'll probably need a place to lie down as soon as I arrive and that a number of people with similar conditions have strongly recommended IV fluids. 

Thanks all. 

On 12/30/2022 at 3:58 PM, minniti17 said:

I just started getting these as well, do they eventually go away?

 

I've been getting these feelings in my chest on and off at different severities for over a decade. Was actually one of my first symptoms. At their worst when resting or waking. Never could find something that dealt with it completely. 

I will remember to make that request @Pistolbut I'm wondering if they'll allow IV before since they don't even want me to drink water. Something's gotta give though or I won't be able to do it.

And yeah, I think the family history requires the most stringent scope. 

Thanks. 

Missed my last endo because the prep (can't drink water for 12 hours) dehydrated me and made me really sick. 

Time flew by after that with a nice flare, then COVID, but now I'm told I'm due for everything and because my father died of colon cancer at a relatively young age (first bout was at 60 years old), I really don't have much of a choice. 

For anyone who has gone through this with POTS/Dysautonomia (I've handled a few cleanly prior to this mess), what special precautions do I need to take to make it through this? 

I'm wondering if they can do the mop up (RSLV-132, etc..), followed by the healing (Zoflin, stem cell). 

I just realized that the first trail in the article, the stem cell one, is very close to me. I may give them a call next week. 

I found this latest list of studies posted by HealthRising this weekend to be interesting. Many of these have been mentioned here before, but here are some of the newer ones that caught my eye: 

https://www.healthrising.org/blog/2023/01/13/long-covid-clinical-trials-big-drugs-big-studies-and-much-more/

Quote

RSLV-132 is a “fusion protein” that’s designed to remove RNA that’s apparently escaped from the cell. We think of RNA – ribonucleic acid – as an essential component (mRNA) of the cell – but in autoimmune diseases such as Sjogren’s Syndrome,  it escapes outside of the cell and accumulates in the blood, where it triggers inflammation and ultimately the production of autoantibodies and autoimmune disease. RSLV-132 mops up the RNA in the blood and apparently did well in a lupus trial.

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By filtering pro-inflammatory cytokines and/or autoimmune markers (such as adrenergic receptors) out of the plasma, plasmapheresis hold promise for ME/CFS. It’s long COVID, though, that’s going to get the first somewhat major plasmapheresis trial. Teeth gnashing aside, if this – and two other trials – are successful, it should boost interest in ME/CFS.

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Efgartigimod (better known as Vyvgart) is used to treat myasthenia gravis – a disease people with ME/CFS have some acquaintance with via Mestinon (pyridostigmine bromide) which is also used to treat that disease. It’s also used in lupus, Sjogren’s Syndrome and … COVID-19-caused postural orthostatic tachycardia syndrome (POTS), which is common in ME/CFS as well. That’s the group this small 42-person Illinois study is targeting. It began in September of last year and is expected to wrap up in November of this year.

Quote

Zofin is a new drug derived from amniotic fluid collected at childbirth that contains extracellular vesicles that can attach to cells and deliver microRNAs to them. Zofin contains microRNAs (miRNAs) that target the ACE2 receptor that the coronavirus enters the cells through. If the ACE2 receptor – which is found in cells across the body – has been gotten messed up by the coronavirus, Zofin could help return it to health. The interesting thing about the ACE2 receptor is that small studies suggest it’s messed up in ME/CFS as well.

I will make the distinction to look towards something that addresses the root cause rather than medications that just mask symptoms. 

Fortunately, I'm seeing a lot of the more recent studies are trending towards medications that get to the cause of the problems. 

The problem with the functional approach is that is also a lot of trial and error and just about all of it uncovered by insurance and occasionally VERY expensive. All things equal, I'd almost always opt for the natural solution that has the same effect as chemical medications that could be solving one problem, but potentially causing others. It just doesn't always work out that way. 

Makes a lot of sense. I had one of my first attacks on the Garden State Parkway. Being on highway like that, not close to home, especially if nobody else is in the car does trigger me now, but I expect a good chunk of that is mental. The brain now recognizes this situation as dangerous. And anything stressful or dangerous is going to make our symptoms worse. 

Yup. Being treated for Sjogren's because I have nearly every symptom, but still struggle with some doctors who don't understand that a large portion of SS sufferers don't show up in bloodwork. 

I also believe that the autoimmune component is causing nerve damage and making exercise more difficult, I know the extreme dryness (eyes, throat, chest) certainly make any physical activity more of a challenge. 

This is usually least concerning of the three types of palpitations I get (skipping and racing the other two). I still often feel it, but I'm not sure if it's either lessened or if over time I'm just paying less attention to it, but at it's worst, it made it very difficult to sleep or relax. 

I'm not sure if there was a specific medication that helped this particular symptom, but I've been doing best with cardiac symptoms with Ivabradine just 2.5mg twice per day (actually, my first dose is still propranolol 10 mg to keep slightly high blood pressure in check). The other med that I believe has helped me most overall is LDN, although I can't say how it would help palpitations. 

The best advice I could give is if she's considering disability, try to do it while you have enough work credits within the last decade. I waited too long and let some work credits lapse and while I was eventually approved for disability, I'm getting much less than if I had done so five years earlier. 

And you're right, most people without the experience have no idea. She has no idea how lucky she is to have at least you in her corner. I still fight with family member on a daily basis about the things I'm not able to do. 

Well, crap is often our baseline, but most of us can probably endure most things that are temporary. Speedy recovery. 

Thanks @MikeO

How did your COVID test come out? 

My mother swears I could catch strep when I was younger by just hearing the word. I tried taking Vit C the first 2 days, but it came up right away each time. 

Day 5 Update: After 1 day of Paxlovid, significant improvement in most symptoms. First night I've been able to sleep all week and stayed in bed until 2 pm. Woke up in drenching sweat (not necessarily bad), but without fever and chills today (fever actually gone yesterday). Able to move around slightly better. First day with any appetite since Sunday. 

Only negatives include an actual increase in coughing and not as dry as it had been. Also having some orthostatic issues. A near constant light-headedness that I feel more in the back of the neck and top of shoulders. Praying this is just a short term thing from being on my back for 3 straight days. 

The only side effects from the meds are a near constant metallic taste (which I was warned about and can handle for a few days) and potentially increased nausea. 

Wow, there are some tough COVID stories on this board. 

Felt better last night, much worse this morning. Starting the Paxlovid on Day 4. Hope I can keep it down. 

Have some slight optimism that an anti-viral may be able to fluster some other potential virus activity in the body too. It's been theorized that EBV is over active in AI conditions and I've even heard that old strep infections can cause problems throughout life. 

The cardio told me I'd have to stop Ivadbradine/Corlanor, but the Propranolol was fine with Paxlovid. 

My cardiologist is willing to try Paxlovid if I get worse and to prevent long term complications. I told her I'd call back tomorrow if I needed it. 

My turn. 

Only saw 3 people for Thanksgiving, but it was enough. 

My mother felt sluggish Friday, I started with the sore throat yesterday. 

She tested positive, I tested negative, but my symptoms are getting worse, while she's getting better already (thankfully). 

In addition to the throat, elevated heart rate (95ish resting) and more PVCs than normal, MORE achiness, feel slightly warm, but don't have a working thermometer. Stomach is a bit of a mess too. 

Are you back to your baseline yet @KiminOrlando

The newest Omicron variant is supposed to be milder, so hoping this is the worst of it today. 

Sad thing is, I felt much above my baseline Friday and Saturday and even got a couple of light workouts in.