I have just been diagnosed with Long Covid and I just wondered has anyone else out there had it and how long does it last for? I am 64yrs old have AF, CKD and Asthma. I have now been off work now for 3 months. I struggled before covid with shortness of breath etc but since covid it has played havoc with my heart and struggled with getting around. I'm now under the long Covid team who are coming to visit me at home to see if I need help with anything. It's a very lonely invisible disease as most people don't understand. As my son said yesterday have you tried red bull for the fatigue 😂😂. Omg I am fed up with trying to explain it. Sorry for the long written note. Thanks in advance for any response.
Long Covid with AF. : I have just... - Atrial Fibrillati...
Long Covid with AF.
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Bowcat
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Hi bowcat, sorry to hear that you have long covid. May I ask if you had all your preventative vaccines? I hope that the team coming to visit you will have some ideas on how you can pick up again. I've searched for an e-mail I had a few weeks ago saying that homeopathy can help, but can't find it. Will have a look and see if it's online.
I had covid and pneumonia together a few months ago and it took me ages to recover. My heart rate was high for a few months and it was weeks before my sense of taste came back. I also lost a stone in weight.
If I can think of anything that may help I'll be sure to let you know.
Jean
Ahh thank you so much jeanjeannie50. Since Dec I've had covid and 3 chest infections so it's really knocked me down. He is coming to help me with mobility aids and also referred me to a respiratory therapist. Also sent me details on how to live with a long term illness. Thanks for your reply it has given me hope. Are you OK now?
Also forgot to say that I have had 2 vaccines as I was scared to have more because after my last jab I was in A/E.
Yes, the vaccines gave me periods of high rate AF. I gave up having them after 3 jabs. Yes I'm fine now but congestion from the pneumonia took months to clear. Do you take any vitamins?
Hi no I don't take vitamins but I have a vegan diet.
You need to get your vit D levels checked. A vegan diet cannot provide any vit D so unless you sunbathe without sunscreen and exposing most of your body regularly between April and Sept ( in UK)you will probably be deficient. If you are older you will make less anyway as old skin is not as efficient. Many studies have shown that those deficient in vit D do worse with covid infections.
Long Covid or Covid Vaccine side effects? Now that is the question.
For example I don't know anyone personally who hasn't been vaccinated suffering from
' Long Covid' but then again that's not scientifically peer reviewed. I am just observing.
hi Tony, im thinking the same thing , ie , side effects.
Every person I know who has complained of this new term 'Long Covid' has had at least 2 vaccine shots, I mean it feels obvious doesn't it?
There are many people who got long covid after being infected by the original Wuhan strain before the vaccines were available. The symptoms of long covid after infection and vaccine damage are very similar though it is more unusual for those damaged by thd vaccine to have the same degree of lung damage.
Had 5 shots and AF. NO side effects.I’m 82.
Thats good eric.
Thank you,I try to be proactive .I’m going to the gym 3 or 4 times a week at 8 AM.I get at least 2 massages a week to recuperate faster between the workout’s.During the summer I also bike 2 hrs.every day.Just trying to keep busy to prevent rust attacking my body.
WOW , Eric , i really admire you , thats awesome and inspirational that you have the dedication to continue training at the gym at 82 , im 62 and try to keep up with walking every other day and light weights on days in between, and i find it a struggle at 62 , i put it down to a-fib, my goal has always been to keep training for as long as i can and you have really inspired me, i just love to hear of people in their 80s and 90s continuing with exercise routines.
My son of 42 has had Long Covid for more than a year. It is just beginning to lift. It has played havoc with his work and life in general.He often falls asleep during the day after a nights sleep and is concerned it may happen when he is driving. He has had all the permitted vaccinations.
Thank you 10gingercats at least it fills me with hope. Does he have AF too?
No. no Afib.
Hello 10gingercats, I'm sorry to say this but your son really shouldn't be driving. Just imagine how you'd feel if he fell asleep and had an accident. He needs to make the DVLA aware, as it is a notifiable illness that could affect his ability to drive safely. Has he been tested for Sleep Apnoea?
I've been feeling some of the effects of Covid for almost a year now. I just wish I had taken Paxlovid at the onset, which some suggest may prevent long covid, but it was contradicted by Flecainide, which I take daily. It is a very lonely disease because they just don't know all that much about it and friends, co-workers, even doctors, can be very dismissive -- adult versions of your son's Red Bull response, as only if it were that easy.
Glad to hear that you have a Covid team behind you, something I've considered, but for now I'm just seeing a specialist here and there to deal with very symptoms. I do hope you feel better soon, but from what I read it's a bit of a patience game. Have to be patient with your body and those around you who often do not understand what you are going through.
That said, they are working on treatments although much too slowly. Seems that all the research money has gone into the vaccines and not enough into treatments. I did read that they will be trying a longer course of Paxlovid on Long Covid sufferers, the theory being that many of us still harbor the Covid virus in some of our tissues and therefore never really got rid of it. So, patience and also hope that if it doesn't go away on its own, treatments are being worked on.
Jim
Thank you very much for your input, very helpful mjames1. Yes I must admit I did laugh when I was suggested to take red bull 🤣🤣.Guess I'll just have to try the waiting game.
And I'm sure the long covid team has told you that inactivity can compound many of the long Covid symptons. So, while kind of a Catch 22, try not to let yourself become too deconditioned even though exercising may be difficult.
Oh trust me, quite the opposite. I've been trying to push myself and I was told off 😂.
You're right not to push yourself. As with ME(my husband has had ME) people with Long Covid tend to get post-exertional malaise which can last as long as 12 to 48 hours after the activity. So exercise needs to be within limits, and time allowed for recovery before exerting again. webmd.com/covid/news/202208...
Paxlovid was never trialled on vaccinated people and it looks like it works less well for them with a proportion having the famous "Paxlovid rebound" like Fauci and Biden suffered . One Pfizer executive tried to spin this as a " bonus" as a further or longer course of the drug would mean more sales and profits for Pfizer. Not much of a bonus for the patients but when did Pfizer ever care about them? Look up their behaviour over Trovan. I'd bet good money that they did nof trial it on the vaccinated ( the majority of the population )because they knew from their pre clinicals that there was a problem.
The so called "Paxlovid Rebound" is speculative and may be just the normal course of Covid. I rebounded twice and did not take Paxlovid. What we're talking about here is not treating acute Covid with Paxlovid but treating Long Covid. It's caveat emptor with any drug, but many drugs are lifesavers. Hopefully, the Paxlovid anti-viral and others to follow will help those of us with long Covid.
Jim
For how long would you have to take it for long covid? Has it been trialled for long term use?
Either in trial now or recruiting. If I remember correctly, it will be a longer course than what is currently being used.
I took Paxlovid when I got Covid, stopped CLL meds, and felt great on it. However when I finished the course of treatment I rebounded and it was worse and was not able to re-start CLL meds. That was last August. As I'm reading posts I realize I might possibly be suffering from long Covid as I'm having a lot of "heart" issues and congestion and burning eyes and fatigue. Seeing PA on Tuesday. Will bring it up
I had Covid in December 2020 which lasted 18 days, fatigue lasted three months after along with labored breathing. My taste and sense of smell came back after a month. It exacerbated my a-fib and I needed an ablation in April of 2021. When all Covid after effects stopped after three months, it was shockingly sudden -- I woke up one day and felt 100% again. Very strange virus.
I had covid with long covid before the vaccinations started. So totally unvaccinated. I was off work with covid for 2 months but I went back to work with long covid on reduced hours. That was a bad idea !!! People’s lack of understanding of the condition and how it affects you, fatigue, brain fog. I described it like I was getting dementia. Everything physically and mentally was hard work. I wish I’d stayed off as long as truly needed going back so soon did me no favours .
I continued trying to work with long covid for 4/5 months when I had a massive heart attack which was not cholesterol related but caused by a blood clot which the cardiologist was only interested in the fact I had long covid as I didn’t have any other risk factors. I was also very physically fit before hand and had continued pushing myself at the gym as much as possible even with long covid.
After my heart attack I’m left with heart arrhythmia’s and some muscle damage to my left ventricle. I never went back to work which was with the NHS. They were awful at trying to understand long covid and then offered me rubbish to return to after my heart attack. Not helpful at all. I’d worked for the Nhs for nearly 40yrs.
I’m sorry for the waffle and I’m glad you’re getting some support there was nothing like that when I had long covid. Good luck.
Ahh bless you, it's so tough I know. I too work for the NHS, 45yrs. People certainly don't understand what it feels like. As my Dr told me that my AF, CKD and Asthma has exacerbated the problem. Apparently it's just a waiting game but bosses can't afford to have you away from work. I'm now considering handing in my notice as it's exhausting and I feel in no fit state to be at work. Oh if only the government never changed the retirement age then it would have made things a lot easier 🤔.
Surely you can go on sick leave, or take early retirement.
I was off work for nearly two months and did not regain full (95%) performance for another 3-1/2 months after that. I base that on my ability to bike up the mountain behind my house. Just keep gently pushing your limits and hopefully you will get back to “normal” soon! Good luck!!
COVID left me with Brain Fog which I had during and after COVID and it has only just stopped in the last month. I had COVID back in May last year and was quite ill with it even even though I was fully vaccinated at the time. I have now had the third booster.
Hello Bowcat, if you are interested in trying an alternative acupuncture helps. My daughter is an acupuncturist and has had a lot of success helping patients with long covid. Please make sure you use someone who is a BACc registered acupuncturist in your area. Good luck in your recovery. Best wishes.
Sorry to hear about the long covid, it's not good... I'm in permanent afib. and have been for a couple of years now. I caught covid last April, then did things too soon after, and got long covid, to cut a long story short, it culminated in huge difficulty breathing, the lymph node in lungs were infected, (they only found that out when I had a ct scan check of the chest and saw something unusual. antibiotics and more antibiotics. which helped a bit.. but a while later, huge water build up, I couldn't walk more than 10 yards, and put on well over 3 stone in 10 days (of water/lymph I assume) because I really coudn't eat..or sleep. It was literally pouring out of my legs, which were like memory foam. Thankfully the furisemide medication worked or I wouldn't have been here now. I lost 5 stone within a month, went from 22.5 down to 17, which is the lowest I've been for 20 years, and feel so much better now. Still in permanent afib of course, but I can live with that.
Oh that's awful, bless you. Glad to hear you are feeling better. I am having trouble getting around too but I don't have the fluid build up thank god.
hi Bowcat,
I had covid in June 22 and after that was diagnosed with Long Covid which is still with me now. I also did the fourth vaccination Moderna in September (following my gp’s advice) which is definitely made my symptoms worse. My symptoms are fatigue and brain fog ( stopped after 2 months) and palpitations (with me till now). Did Holter monitoring and showed 10% PVCs and some bigimeny (absolutely new for me). Doctors confirmed that everything due to Long Covid and strictly advised against any new covid jabs. Was offered an ablation for PVCs . Now I am waiting the results of 7 days holter to understand the dynamics. My cardiologist said that in majority of cases all symptoms disappear within 6 months but sometimes not.
I am very active and try to push myself further. But I noticed that I need mind the line: too active- will cause more palpitations, inactivity- the same. Should stay in the middle.
I asked for advice on the forum earlier and was advised deep breathing. It definitely helps.
Yes, I understand that it’s sometimes difficult to explain to others. Only after the cardiologist and EP confirmed my long covid my family started to take it very seriously.
Hope it helps,
Cheers
Both long covid and vaccine reaction can cause the same sort of symptoms. This is because the really toxic part of the virus is the spike protein and this is what the vaccines (both the mRNA ones and Astra Zeneca ) make our body manufacture . The mutated spike of Omicron is probably less toxic but all people who have been vaccinated have made the spike of the original Wuhan strain because the instructions to make that is in all the vaccines including the new bivalent ones. So if you catch Omicron after being vaccinated and boosted or if you have any jabs after getting covid you are getting another dose of spike protein Some research was done in Oxford I think in 2021 but it might have been last year that showed that vaccination was not protecting against long covid. Some people are worse at clearing the virus from their bodies and others actually make the spike protein in response to vaccination for far longer than the purported few days . The FLCCC Alliance of doctors in America have protocols for treating long covid and vaccine damage . Some of the treatments used will not be available on prescription from conventional doctors but there are supplements which can be obtained easily online. If you put in a search for FLCCC Alliance protocols you should get them.
Hello Bowcat, I'm sorry to read about the set of health problems you are experiencing.
You may like to check out: healthunlocked.com/thyroidu...
As an AF sufferer myself looking for answers, I find it is often interesting to cross-cast between sister sites confronting similar clusters of symptoms.
The info on the FLCCC site is really good. Thank you for posting that.
It seems like a long time ago now, but I was being treated for something in the hospital ward where the first two cases of Covid were treated. (R.V.I. Newcastle UK)
My wife and I both felt ill a few weeks later but did not make the connection because Covid was very new.
When it really blew up and the vaccines became available we both decided against having vaccines because playing with RNA without proper trials etc, did not seem sensible to us so we decided to keep ourselves as isolated as we deemed to be sensible and do regular self-tests until it was under some sort of control.
We both tested positive in February last year but had very mild symptoms and got over it quickly.
I started feeling ill in August last year and soon recognised it as Long Covid so asked my GP for help as I was brain-fogged, tired, had chest pains and, worst of all, my muscles ached painfully and constantly - it was as though my muscles just didn't want to stretch and when I did stretch them they really hurt. A bit like cramp. Constant pain, poor sleep, etc.
Previously, I had HF at level 4 because of a very high ectopics rate but had managed to get this down to level 2 over a couple of years and had been discharged from the HF clinic as my ectopics were now normal. The ectopics returned when the Long Covid came.
My GP was unable to help, other than by doing tests: chest x-ray, heart scan, etc, which all came back as OK.
I've read everything I can about Long Covid and it is bewildering just how many symptoms it can cause, so that article on the FLCCC site was really useful.
One of the things I read was some research at Oxford that looked at the problem of painful muscles. It said that it seems that an enzyme in the muscle that is responsible for telling the muscle how much oxgen to take up, was not doing its job. Even though there was plently of oxygen in the blood passing through it, the muscle just didn't take it up.
This made sense to me because I'd been using a pulse oximeter for some time and my oxygen sats were always 97% or more. Breathing exercises brought that up to 99%.
They thought that the problem was related to Histidine, an amino acid, and they were working on testing whether a supplement would improve things.
I decided to try this myself (any port in a storm) at a safe low dose to see if there were any improvements. I took 1g a day for three days and then 1g twice a day for three days.
Whether it helped or whether it was coincidence I don't know, but I felt an improvement and so stopped taking the histidine. My muscles are still not as they were before I got Long Covid, but I am functioning again. I'm able to do a couple of slow and easy miles a day on my spinning 'bike (Like a Peleton) to try to get my muscles back into use. I decided to wait a few weeks and then try the histidine again to see if there's further improvement. I'll start tomorrow, Monday, and do as I did before.
I realise that this is not for everyone so please don't just jump in and try it.
I contracted covid 3/2020, before vaccines came out. Have had 3 Pfizer shots and won't take another one. It took me 11 days to get well after the 3rd one. It took several months before my doctor determined I had long covid. At that time, I was put under the care of a long covid research team. They had me walk,walk,WALK. 3 years later, I am in pretty good shape, although my sense of taste never did fully come back
Not at all. I hope it is at least interesting. Gut health may seems off topic, but once you start suffering from any part of the suite of fatigue symptoms it is worth identifying whether something has hacked the normal functioning of your digestion, which we too often take for granted, and GPs largely ignore (bar prescribing PPIs, which can do more harm than good).
Bugs like to make themselves at home within a biome that suits them, but not us. It all seems banal, but the consequences can be severe. Only exacerbated by our modern diet and often indiscriminate antibiotic use. There are very close links between brain and gut function (and mitochondrial function as a whole). For an additional primer see, e.g.: drmyhill.co.uk/wiki/Ferment....
Do not know whether it might help anybody here, but docs have found out now that thyroid as well as adrenals have a part in long Covid. Thyroid labs change after infection, so does your cortisol. Problem is, most docs only know about therapeutic use of cortisone, so do not dare use it, as it could cause probems with your own production when given in high doses. There is also a physiological dosage, which would be used when your own adrenals are sick or weak, like 20mg or less of hydrocortisone. As far as I know they are just starting to work on this. Myself, I got two new autoimmune diseases, probably from Covid last summer, but who knows (colitis ulcerosa and diabetes2).
I had covid in April 2020 as I was a nurse on a covid ward. Still struggling at times and every booster has made it worse so not had the 4 th one. I had af in November 2021 2 weeks after 3rd booster. I know several colleagues who have had heart arrhythmias since getting covid. I think long covid is not going to go away and we all will have to cope with it the best we are able to.
Sorry no experience of this. As far as I know I haven't had covid....yet! What I would say though is don't touch red bull if you have afib or any other stimulants otherwise you may find yourself in trouble with afib episodes and fast heart rate
That's exactly what I said to my son. Like it would sky rocket 🚀 my heart rate 😂
Sorry to hear this, Bowcat. I hope you feel better soon. I do know someone who developed myocarditis, and three more with significant long Covid. Two of those three are doing really well. Sometimes things take as long as they take.
It's definitely worth ensuring your D and B vitiman levels are normal. To ensure your immune system can heal. It's easy to be low in both if you are vegan/vegetarian.
There is no way of being sure but my pericarditis etc apparently may have been triggered by an " invisible" covid infection. Hmm. I ended up with around 8 consultants and they all had different opinions.
Good luck, and feel better.
Sorry you are going through this. I’m in Australia and a podcast called Coronavirus via ABC Radio recently detailed how the Omicron variant was behind lung damage. I can’t find it but found this report interesting wap.business-standard.com/a...
Ahh that's great. Thank you. I shall have a read. 👍
We’re being encouraged to get an Omicron booster pronto here as there’s another wave underway in NSW. I mentioned the wrong podcast, it’s called Coronacast abc.net.au/radio/programs/c... for those among us still willing to digest virus news. They release a new one every week. Meantime I’ve now had all five boosters, still wear a mask indoors and haven’t caught the virus as far as I know BUT symptoms early in 2020 (Jan) which led to a 10-month merry chase from one specialist to another (neurology-audiology-ophthalmology-gastroenterology-cardiology) often make me question whether I was among the first batch here to get Covid and go on to suffer long Covid! Obviously affecting my heart. Back then there was no testing and even since then no one has ever asked whether I had Covid despite atypical symptoms. If so my symptoms (including fatigue, headaches, ancute hearing, muscle weakness and palps even post ablation) still dog me 2+ years later. Exercise (especially hydrotherapy) has helped and my latest adviser a dietician who despite trying to help me gain the weight I lost leading up to AF dx insists I remain on a low fat diet. I really hope people get vaccinated every year like most do for flu as I see it as a way to minimise those getting long Covid and our only way out of this pandemic. Sending you a virtual hug and well wishes to getting back good health.
Thank you very much, you too 👍
Hi last night a new report linked long-Covid to CFS and a new drug trial is to get underway next month. Says fatigue due to calcium disruption and virus causing changes to brain stem. Here’s two links news.griffith.edu.au/2023/0... and amp.9news.com.au/article/3d...
Thank you very much
So sorry to hear about your long covid, my wife has been going through it too. We are in Australia , and there is very little acknowledgment of it.
Please don't have red bull, it would put you on AF big time. Hope you start to feel better soon, my wife is, after 3 months, it gave her AF
Which is also improving.
Thank you. No I definitely wouldn't touch red bull 😂 my af would go through the roof. I'm glad to hear that your wife has improved. I've had it nearly 3mths now. Can barely move around without increasing heart beat, breathlessness and feeling faint and dizzy. Hopefully it'll pass soon.
I have AF and long Covid and it's horrible, I'm asthmatic too so new inhalers just started, which I believe is what they give to COPD sufferers, think the beta blockers I'm on hinder my breathing too so feel like the odds are stacked against me at the moment...The Red Bull would set your AF off too 😉
Oh trust me I wouldn't touch red bull. I hope you recover soon. I had to stop beta blockers years ago because it was made worse due to my asthma. So just take anticoagulants now.
I’ve read about zinc helping the lungs and here is a link that might help I don’t know. covidlonghaulers.com/
Thank you I shall take a look.
Bowcat,
I'm sorry you're going through this. I know long covid can be just as bad or worse than the original infection. In fact, people who have very mild symptoms with Omicron (compared to Alpha & Delta strains), can develop long covid for up to twelve months after initial symptoms. It can be debilitating.
From what I have been seeing in the hospital, there have been many, many people who developed Afib and many other health problems from covid. I believe these health problems stem from the body's reaction to the inflammatory process when the immune system reacts to the virus spike protein. The immune system inflammatory process seen with covid infection is called cytokine storm. The cytokines are special immune cells that proliferate when a foreign organism enters the body. The body makes these cells to fight the virus. In covid, these cytokines wreak havoc in a person's body in a multitude of ways. Some people develop lung problems. Some develop blood clots. Some develop heart problems. Some have problems with their spleen, gall bladder, & bowels. Some people have developed neurological problems and tremors. So far, most doctors & pharmaceutical companies haven't found ways to effectively treat it. There is a correlation with underlying metabolic syndrome. Many people who have poor metabolic health may experience worse outcomes with covid and/or long covid.
I read a study showing that Ivermectin can be effective in treating covid and long covid, but the use of Ivermectin has been vilified by the state health agencies and it can not be easily obtained.
It's important to realize each person gets one body in this life, so we all have to guard our health like a precious investment. It sounds like you observe a healthy diet. But, unfortunately, the vegan diet lacks essential vitamin D, which comes from animal protein & eggs. I realize many people who observe this diet do so because they love animals, and I respect that, because I also love animals. Ask your doctor doctor to check your vitamin D levels. Of course, get some sun exposure everyday, but ask him to prescribe a vitamin D3 & MK-7 supplement until your levels are over 50. This supplement can increase serum vitamin D levels without causing calcification in the vascular system and organs, plus it helps prevent osteoporosis.
Vitamin D is a hormone precursor. It is not technically a "vitamin." So, those people who have poor metabolic health, such as type 2 diabetes, hyper/hypothyroid, low T, low estrogen, PCOS, and many other "hormone" disorders should have their vitamin D levels checked when their hormone levels are being checked. Low vitamin D levels could be the contributing factor.
Another thing to consider: There has been much recent news indicating that covid was created as a weapon by the US Department of Defense and the "gain-of-function" research was moved to Wuhan, China before it escaped or was released. We may never know the true story. Regardless, the virus has been a killer for some, and a disabler for others. Everyone should take a serious approach in making their body less of a target for covid.
With many early treatment options vilified or inaccessible, you should think about accessible substances that will build your health. Recent research has shown japanese fermented soy beans, called natto, is a superfood. Nattokinase is the enzyme in the food that has amazing properties. Nattokinase blocks the covid spike protein, dissolves blood clots, dissolves fibrin clots and tumors, is anti-inflammatory, reduces cholesterol & has a superb 40 + year safety profile in Japanese medicine, where it has been used to treat fibroid tumors in women.
Here's a link to an article written by a Cardiologist, Dr John Day, who specializes in heart rhythms. He gives his opinion on natto & nattokinase:
drjohnday.com/is-nattokinas...
This doctor eats the natto beans. I purchase a natto supplement from Amazon because I've heard the beans are slimy. I used nattokinase 20 years ago to dissolve a uterine fibroid. And, started taking it again recently after reading all the amazing benefits it provides, especially regarding covid.
Don't give up! The fatigue is real, but you can beat this. I've heard that it long covid usually lasts about a year, but it may be premature to believe that considering covid-19 has only been around for about three years and some people get sick from multiple strains.
If you're not getting better doing what you're doing now, then you have to keep trying until you find something that works. If you can find a homeopathic practitioner, they may have alternative paths that could help you heal your body and help you get strong again.
Best of luck!
Thank you very much for this information. I have an appointment next week with my Dr as I'm low on vit d and b12 too. Also I've been referred to the respiratory team and under the covid rehab team now so fingers crossed, I'll soon get better. I shall have a read of all the info you sent thank you.
You are most welcome. I will add a prayer that your body will heal & your team will have you feeling very well again soon!
Ahh bless you. Thank you
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