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long covid shortness of breath, more in depth testing

Posted by siggy12345 @siggy12345, Jun 3 7:47am

Hello, I'm a 5 year long covid patient, with many symptoms. These discussions are very helpful to me. Main problem now is shortness of breath, upon exertion (walking up one flight of stairs, on a bad day). Someone mentioned a more in depth pulmonary test ( scan of some type?). It showed small air pockets or bubbles that may be causing s.o.b. My pulmonologist is willing to do that test, because all the tests so far( CT scans, x rays, breathing tests )make me look good on paper. Thanks for any answers.

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capuccinofrost | @capuccinofrost | Jun 9 12:36pm
In reply to @sweetwater9 "Siggy, Have you asked your doctor about Histamine Intolerance? I believe that is what is causing..." + (show)
@sweetwater9

Siggy,
Have you asked your doctor about Histamine Intolerance? I believe that is what is causing my night time SOB and racing heart.. It has been connected to at least some of the LC sufferers. Some of the symptoms are the SOB and heart arrhythmias (can be worse at night especially towards morning), bloating/digestive issues, headaches, fatigue, stiff joints, skin problems, brain fog, congestion.

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This sounds as what I deal with. S O Breath. Heart pundits can’t go up stairs usually weak legs light head. Digestive bloat n other stuff.

When I get Covid, that starts all over again it has not gotten completely away, but I found that I have low iron anyhow and low be vitamins and I found out that Covid lower your iron so I started to take iron gain double strength. I take them now brand double strength iron I take them now brand be complex and magnesium citrate vitamin D a couple thousand I use a day and I was actually getting on my feet and got sick again. I’m trying the nicotine patch today. You take 17 mg patch and you cut it into three sections and you use one a day for a few weeks.

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1 reply
homemarcy | @homemarcy | Jun 10 2:02pm
In reply to @dmphillips "Can you describe test to diagnose your heart microvascular dysfunction? (My echo was normal as was..." + (show)
@dmphillips

Can you describe test to diagnose your heart microvascular dysfunction? (My echo was normal as was 3-day heart monitor). The inhaler prescribed (Symbicort) does nothing; in fact it makes my symptoms worse. Curious if I should further explore with cardiology- or Mayo if necessary. Also, is there a drug treatment or simply lifestyle changes for you?

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The test to diagnose microvascular dysfunction is called a provocative angiogram. Essentially the specialists give you a medication that will cause symptoms if you have microvascular dysfunction and won't if you don't. They can also test your coronary blood flow to see whether it is being restricted.
If your cardiologist isn't comfortable doing a provocative angiogram, they may tell you it's a dangerous test - and it would be if they tried to do it with limited experience. At a clinic like Mayo (or other big cardiac clinics), they do these regularly, and it's no more risky than a regular angiogram (heart cath). Worth doing, because an accurate diagnosis means the right treatment.

No other test will necessarily show anything . . .

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sweetwater9 | @sweetwater9 | Jun 10 6:58pm
In reply to @capuccinofrost "This sounds as what I deal with. S O Breath. Heart pundits can’t go up stairs..." + (show)
@capuccinofrost

This sounds as what I deal with. S O Breath. Heart pundits can’t go up stairs usually weak legs light head. Digestive bloat n other stuff.

When I get Covid, that starts all over again it has not gotten completely away, but I found that I have low iron anyhow and low be vitamins and I found out that Covid lower your iron so I started to take iron gain double strength. I take them now brand double strength iron I take them now brand be complex and magnesium citrate vitamin D a couple thousand I use a day and I was actually getting on my feet and got sick again. I’m trying the nicotine patch today. You take 17 mg patch and you cut it into three sections and you use one a day for a few weeks.

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Capuccinofrost- I am already taking the magnesium and vitamin D. Also, because of restless legs, I had 900mg of iron in an IV last year. Now ferritin is in the 500's; it could be because of having Covid so many times besides the IV. My percentage of iron saturation is in the average range though. My practitioner uses a nicotine patch for her LC racing heart. I am concerned about addiction. Just another problem to face in the future. But you do what you got to do. Thanks for the information. Let me know how well the nicotine patch works please.

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sweetwater9 | @sweetwater9 | Jun 10 7:17pm
In reply to @trillium1 "Thanks I think there are so many guidelines and some areas can be grey on what..." + (show)
@trillium1

Thanks I think there are so many guidelines and some areas can be grey on what you did and what worked for you and what clues you got from researchers I worked with. Yes I do think what they are showing is better clues as to what we should try. I really think you have to let people tell their truths and let the reader decide in someone's story. Yeah I am not happy with how the healthcare system ignored us with covid vaccine injury. I think I have the right to say so. I also have been treated poorly and tracked so badly with so called experts. I think that is helpful for those who are thinking it must be me when in fact there is so much of this that still goes on today and it is systemic. I also cite research papers that are helpful with the issues I was able to track down. Doctors just don't have the time to do this for some of us who have unique genes. Because this site is linked with a healthcare system I think there can be more censoring with how people feel about the treatment from this sector. I just thought this would be a good place to provide links to new data about iron deregulation with covid and this may open some eyes about breathing issues. Afib is also big problem with us and now cardio docs are giving us pills that make that worse with iron deficiency. Vitamin D has tons of links for helping afib. So not sure what the purpose of this site is just to let some steam off in short friendly tone or to actually share pertinent data since docs are not doing it. That is why they are here in the first place.

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Trillium- Would you please reword this sentence you wrote. Afib is also big problem with us and now cardio docs are giving us pills that make that worse with iron deficiency. Makes what worse? What about iron deficiency?
Thanks.

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