Anyone with everlasting symptoms of Covid?
I think I had mild Covid in April. Then had shingles in May. My worst symptoms are the high fever and night sweats which start around 3am and stop usually my 6am. 3 weeks ago I had a course of antibiotics and steroids. Symptoms vanished and have slowly returned.
So sorry to hear you’ve been struggling. ‘Long Covid’ is a thing. There was a video piece on it on the BBC - friend just posted a link on FB this very morning as it featured another friend! I think there are lots of support groups springing up and the NHS has recognised it with their Covid Recovery advice. I really hope you feel better very soon. So much we don’t know about Covid.
I would definitely follow up on this. At a minimum a COVID anti-body test to see if your were exposed. Like all viruses, it could come back in a surge if you had it but never fully recovered. So much is still not known, particularly for those of us with MPNs, that it is better safe than sorry.
Hope you feel better soon.
In Scotland eligiblity is only if you have the symptoms of the virus in the first 5 days. I was first infected in April.
If you are actively symptomatic I would think you would qualify. With testing so much more available now, I would think the guidelines would lighten up - especially for someone with PV. It could of course be something totally different. No reason to suffer in silence - it may be something readily treatable. Hope you get answers and relief soon.
I’ll investigate this further.
Antibiotics impact your good bacteria requiring their restoration. Emphasizing fermented foods in your diet will begin their restoration. The probiotic saccharomyces boulardii during and after courses of antibiotics allows your good bacteria to recover sooner and helps inhibit c. difficile. Research olive leaf extract's effect on the varicella zoster virus in addition to it's general overall use. It's interesting it doesn't kill beneficial bacteria. There may be a Herxheimer reaction resulting from a die-off of pathogens like yeast, "bad" bacteria, parasites and viruses so start slow. A new covid-19 study shows the importance of Liposomal vitamin C . Suggest 15ml three times a day. It's critical for collagen building to control bruising. purpura and leg ulcers with MPN's. Sweating causes loss of magnesium, click on " krispin magnesium" for more information and on "nothing boring about boron" to help absorb and retain magnesium. Always consult with your health care professional before using any supplement.
Sorry to hear you are going through such a hard time. I hope you get it sorted out soon.
Hi Eleanor,
I had Covid in March, took about 14weeks to clear worst of the symptoms (debilitating fatigue, shortness of breath, tachycardia to name a few). I found that some symptoms kept coming and going for months and then just disappeared overnight - apparently a common pattern in long covid recovery.
Having read about lots of people who have bouts of other viral conditions show up post covid I’m not surprised to hear you had shingles afterwards. My own partner had much milder covid than me, followed by 3 consecutive cold sore flare ups that were really aggressive and lasted for about 6weeks total.
5 months later and having been reviewed by ED doctors, neurologist, cardiologist and haematologist we still don’t know which of the symptoms I’m experiencing are post viral and which are ET related so a little at sea and short of answers!
One residual symptom for me (common for lots of ‘long covid’ patients) is elevated heart rate. My resting HR is constantly double what it was pre covid. Light exercise now gets my HR up to what an intense workout would have done previously. Again, no answers to why, full work up in May showed no obvious cardiac issues. Cardiology are repeating some tests next month, I’ll let you know if there’s anything of interest to report!
There’s a great slack forum run by body politic for covid patients, it’s a wealth of information and might be helpful to you. Hopefully this link to registration form works for you - if not google slack+body politic+covid
docs.google.com/forms/d/e/1...
Will be keeping fingers crossed that symptoms ease off for you soon 🤞🏻
Sarah 💚
Hi Sarah,
I have ET and have been experiencing the same set of symptoms but my GP does not think I qualify for COVID testing. I have had a full cardiac screening including a coronary CT scan thinking it may be cardiac related. Wa diagnosed with atrial tachycardia and placed on beta blockers.
I have a phone “visit” with my cardiologist today and plan on asking him to order the COVID test. I use to walk my dog 5-6 km a day and now get knackered after just 1 1/2km, short of breath, lightheaded and have heart palpitations. All of this began back in April.
Sorry to hear that IrishHiker. Insane how the medical profession recruits the most compassionate super humans on one side and egomaniacs who are allergic to admitting they don’t know what they’re dealing with on the other🙄
I also went through that rigmarole of having to convince doctors to listen initially. An ED doctor I saw told me I was the 6th patient he’d seen on that day alone presenting with same cardiac symptoms post covid. Then saw a cardiologist who actually told me to take a valium (for hysterical woman syndrome I assume).
By all means go ahead and push for a test, you might learn something from it. Be aware that you need a significant viral load to register positive, so if you’re at the tail end you’ll likely test negative. Doesn’t mean you haven’t had covid. As a wise doctor said to me “if it walks like a duck and quacks like a duck
It’s Covid”
It is strange my partner’s son stayed with us he was tested for COVID and results were negative after being with us all of July. My partner remains non-symptomatic as well. I am not certain if they can test for antibodies instead of for COVID. I live in Ireland and attend UHG for care. It does not hurt to ask so I will try.
Lovely part of the country! My dad’s on holiday in Galway at the minute and is driving me crazy sending fabulous photos while I’m stuck here in rainy Dublin 😂
Last I checked antibody tests weren’t available publicly in Ireland, but that was 2 months ago and things are moving very quickly in terms of covid so worth asking the question for sure.
It might have changed now but the covid tests being done in July were only returning about 70% accuracy between false negatives & undetectable viral load (I got that information from a Tallaght hospital and was repeated by a friend working in a covid lab), and if you had covid in March/April you would have been well out of the infectious period by July I’m guessing.
I’ll let you know if I learn anything from Cardiology when I’m back in October that might be useful
Just got off the phone with cardiology resident he said no to COVID test but if I want one it is ok with them they ONLY deal with cardiac😡 I asked him if he had heard that COVID. Has been linked with cardiac symptoms but he was dismissive. Not a big surprise! I’m a nurse and have dealt with this type of attitude many times.
Dear Eleanor I had presumed COVID in March and I was very I'll but not hospitalized so no testing was available here then. I definitely have long term effects and shingles following it. I was very confused as to what symptoms were CLL and what were "Long Hauler's". I kept putting off targeted treatment because I was still feeling wretched. I finally realized that my CLL symptoms were getting progressively worse. Very low Hemoglobin, neutropenia, sweating, trouble breathing and fatigue. I realized that whether or not I still had COVID symptoms my CLL was getting worse. I then started treatment. It is a possibility that these sweats are your CLL as sweats can be a symptom of CLL.
Check with your doctor. I am so sad that you have had to go through both experiences. I am glad for both of us that we survived. Keep posting and I send you good wishes.
Thanks I've check with my doctor.
Pv with covid
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Covid and paxlovid 
