Covid lungs thread 18 weeks plus - thread 2

[LetsBeSensible]

A thread for those with “long covid” experiencing symptoms for around six months now.

Some resources
UK sepsis trust vids m.youtube.com/playlist?list=PL16uJ-CyqxJIJpdLhf-Ccjhdvf4uNBIie
Physio for breathing pattern disorders www.physiotherapyforbpd.org.uk/
Dysautomnia webinar video vimeo.com/442593497?utm_campaign=5370367&utm_source=affiliate&utm_channel=affiliate&cjevent=38c74aa9fd7b11ea82d1002e0a180512
Articles, links, Resources c19recoveryawareness.com
Ricovr project videos

Video 1 - An introduction to the CRESTA team and fatigue
Video 2 - Managing your energy and daily activity
Video 3 - Looking after yourself during your recovery
Video 4: - Activity and fatigue
Video 5: - Question & Answer session on common issues for Covid-19 recovery

Hi @fedupofbed sorry you’re struggling 💐 is there anywhere you can go to have a change of scenery? Maybe someone can take you for a gentle drive to see something nice? A family member is doing this for me and it really raises the spirits. Hope you have a brighter weekend 🙂

@fedupofbed I do understand, I have sad days. I have had to accept that my life is not the same, even if I am just left with the PoTS that's likely years to manage/recover from (if I will recover). It's a new way of being for me and taking some getting used to. When you feel things are getting better it's so hopeful, and then on a decline it is so so hard.

Thank you so much @MillStone and @TiddleTaddleTat 🙏🏻.

It probably doesn't help that the weather's changed and we can't just sit in the garden - I can't remember the last time I properly left the house. You're so right MillStone, a trip out does lift the spirits. I'll definitely get DH to drive me somewhere this weekend.

I really believe there's a strong body mind connection and that it's important to remain positive and hopeful whilst accepting the way things are now. It's just so darned hard sometimes.

@fedupofbed absolutely agree with mind/body connection. Are you familiar with Gabor Mate's work? I have been listening to 'when the body says no' on audible (free trial!) which is very interesting . On the back of this - and my personal experience with long covid - I'm making concrete changes in my life to try and reduce some of the things that have caused me great stress over the last few years.

https://wordery.com/when-the-body-says-no-dr-gabor-mate-9781785042225?currency=GBP&gtrck=cDdCTHg2VTUzaUYvMFNTSlhWSHpwUFBMdzF4NklIeTh5cGU0dzF5UHBGeFVVaVU4U0czcTEreWI5VmllT0oxZkJRMmE4T3ZidURBdTI3MHNDNlRiTmc9PQ&gclid=EAIaIQobChMI8DHkp7I7QIVkZntCh1gWA9gEAQYASABEgKtiiDBwE

I think someone was asking about DAO supplements? I've just started on the one below. Took 2 before a meal with sausage and Gf pastry last night, and a small glass of baileys!! Then 2 before breakfast which probably wasn't needed as the only higher histamine item was a very small amount of nitrite-free bacon. Have felt fine and slept well last night so all seems good with it. Roll on Christmas treats!!

https://www.allergybestbuys.co.uk/products/daosin-for-histamine-intolerance-30-capsules?variant=27305179873380&utmmedium=cpc&utmmsource=google&utmcampaign=Google%20Shopping&gclid=EAIaIQobChMI1bibgJ7I7QIViJ7tCh3LQwxhEAQYASABEgKkzzD_BwE

Just realised I took a double dose of DAO... if you do end up getting that one note it says 2 per day - 1 before breakfast and 1 evening meal. I'm not planning on taking it every day (too expensive) just before problem foods .

Hi, thanks for the recommendation @TiddleTaddleTat. I'm glad the book's helping. I've heard him on a podcast a while back, and am interested in reading more.

Sounds like the DAO supplements are working a treat. I think I may get some too, as I'm finding it really hard and impractical to completely stick to a low histamine diet. It's not very rewarding either as I've never noticed any correlation between food and my symptoms, either before or after the diet. I'll stick with it a bit longer though - maybe the DAO will be the definitive proof one way or the other.

Bailey's, what a treat!!

The consultant appointment went well. It was reassuring to speak to someone who could give me information rather than just scratching their heads and telling me my tests are fine. He said I sound PoTS-y, and that I need further tests to confirm best treatment options. The blood and urine tests are fine at my local GP but he really wants me to come to his London clinic for the physical tests - that's a 3 and a half hour round trip 🙇‍♀️. Not sure how that will impact me, but he was very confidence-inspiring so I'm going to try. He said he has about 30 patients with post Covid PoTS so far.

@fedupofbed great to hear your appointment went well. It helps so much just to speak with someone who understands and doesn't dismiss the symptoms. Did he suggest any treatment in the short term, or will you need to have the tests first? Tilt table , 24h ecg, echo?

I'm due to have an echocardiogram at some point. Waiting for letter.

I agree the diet is a pain, I think it's worth giving it 4 weeks if you can before trying to test out what you can tolerate adding back in. I really feel I need dairy (and milk is high tryptophan which seems particularly key) so am adding that back in at the moment.

@TiddleTaddleTat he went into loads of detail about the condition- it was really interesting. He talked generally about things that can help - fluids, salt, compression gear, exercise protocol, etc. When I said that I was already doing a lot of that, he said yes, great, carry on.

The urine test is to check hydration levels but I'm intrigued about what the blood test is for. I already had a 7 day halter test, an Echo and ECG back in May so he's going to review those in the first instance. He said ideally that I should go to his clinic on 2 separate occasions for 2 different tests which I know I can't manage, so he said just try to go to the one more important one. I'm assuming that's the tilt table, and the other may be some kind of exercise/ stress thing which would finish me off!

I don't know if you use the Body Politic Slack forum but someone has recently posted a huge amount of really useful resources in the dysautonomia channel. I think the medics in NYC have been on to this far quicker than here in the UK.

Re diet, I've actually upped my milk uptake since starting as I'm now eating porridge every day. I've always been loathe to reduce dairy as I have osteopenia from the Coeliacs (and I'm at that age when it becomes more of an issue). I'll keep at it for a while longer but maybe add in the DOA supplements too.

@fedupofbed no I haven't managed to get into the slack group yet. Thanks for the tip.

I wonder if you are having any cross reactions / food reactions that are compounding your fatigue?

I know it's knackering but might be worth trialling a food diary to see if you're reacting to something? I developed coeliac about 3 yrs ago and during that time -identified through an elimination diet and food diary. I was eating (GF) oats daily with cows milk. I couldn't understand why I was continuing to have some symptoms. Eventually I removed those - testing both individually before identifying that the oats were causing the stomach pain and fatigue, and dairy was giving me the (temporary) lactose intolerance.
This time around I've developed a sensitivity to corn. Potentially also egg and dairy, I'm trying to get to the bottom of that.
The virus impacts the gut, there is a link with leaky gut where food leaches into the bloodstream and causes immune reactions. Fatigue is a symptom of this.
I think that the low histamine diet is a tough diet but also common trigger foods need to be tested with caution -gluten, dairy, egg, peanut, corn etc.
I only removed corn once I'd seen in my blood tests that one of my white blood cell markers (basophils I think) were elevated after eating corn for a couple of days and seeing the correlation. It was only because of the food diary that I could make the link.
Just an idea?

Hi All, just checking in. As nice as it is to see the familiar names I wish we didn’t have to be here.
I have been ok-ish, fatigued mainly but probably doing too much. Other physical symptoms on and off.
However, mentally not great. And I don’t know whether that is covid related. It has been a tough year and I think without being ill it would have been tough for me, with my family across the channel and only me and my 20 year old son here. But I currently keep crying and I am really low and I don’t know whether this is all triggered by covid. How has everyone been mentally?

@Moodgie sorry to hear you're struggling mentally. Your physical improvement is positive and worth holding on to, and hopefully mental health improvements will follow.

For me, I have definitely had severe anxiety days and low periods too. I never struggled with mental health before - the odd low day but nothing that lasted more than a day. I guess with the lockdown / ways of life at the moment it's hard to disentangle whether it is having had covid or living in a pandemic world that causes it but my suspicion is that it's worse from having covid. It takes a toll on the body, leaves us tired and certainly for me not knowing who or where I could go to for help left me feeling very scared. GPs sound like they're getting better but I had some terrible phone appointments across June-August...I don't think I'd have ended up in a&e twice if the GP service had been better!

In terms of helping with your mental health, it's really good if you can find someone to talk to about how your feeling. Consider whether there are herbal mood lifters you want to try - I take ashwagandha with helps with calming (and valerian drops on the extra bad days). My husband has also had depression and anxiety for many years and finds SSRIs brilliantly successful. It's worth keeping an open mind.

Hugs to you. Try to one nice thing a day for yourself. For me it's reading a book at the moment!

@Moodgie one further thing that I won't pretend to understand the science on as I've not read enough about it. I saw somewhere recently that mast cells are involved in release of serotonin which modulates our moods. If long covid is affecting mast cells, perhaps there is a theory there that it will affect mental health too?

Hi @Moodgie good to hear from you and glad of your physical progress, but so sorry to hear you're feeling low. I think it's completely understandable having been so much this year. The world as we know it was completely upended, and alongside this you were facing physical illness with your family far away 💐. Also as @givemeanother said, we don't know how much Covid has affected our body chemistry. @givemeanother I'm sorry you've had anxiety and low mood too. I think we have to be really kind to ourselves and treat ourselves as we would treat a good friend going through this.

I posted a couple of days ago that my mood was very low, and I cannot seem to lift myself out of it. Yet again, for the zillionth time I'm considering anti depressants, but I'm always put off by the side effects.

Thanks yet again @TiddleTaddleTat for all your advice. I agree re leaky gut but I can't seem to work out any triggers. I've changed my diet a few times but have never been able to work out any correlation to symptoms. My symptoms have never seemed to 'flare' as such - they either stay the same, get incrementally better or incrementally worse. The only possible trigger that I've not tried cutting out is dairy. I guess I'll try that next... not sure I'm quite ready yet though.

@fedupofbed sorry to you too to be feeling low. Only a sample of 1, but my husband hasn't had any side effects from fluoxetine (his SSRI)...other than anxiety increasing / fluctuating for the first two weeks...this is the second time he's gone on them after being off for about a year...once he was through the first couple of weeks
it really is a game changer for him. Might be worth asking the GP for options?

@givemeanother @fedupofbed thank you so much for your kind helpful words. This group has helped me through the darkest covid days and I’m forever grateful. Hope you both, and everyone else in this group, gets better and all of this will be distant memory soon. Xxxx

@Moodgie @givemeanother @fedupofbed I've also heard positive stories about people with long covid going on SSRIs, I think this is consistent with the NAD+ deficiency hypothesis - serotonin is 'scavenged' to produce NAD+ and the SSRI helps address the imbalance. Worth a shot.

@TiddleTaddleTat it does make sense...my fear if SSRIs helped would be everyone going, aha so it was anxiety after all 😫

I've had a good day today. Possibly the antihistamine or niacin (I'm up to 200mg a day). But I have today tidied up the back garden ready for winter, swept up etc...will be interesting to see if I pay for it in the next couple of days.

Hi everyone, just checking in. In everyday life I feel better now. Its only when I try to exert myself with exercise that my lungs protest. They just ache and burn and generally don't like it. No relapses if I try now. @Moodgie I too have had periods of feeling quite down and depressed which I have never experienced before. I think long Covid has just taken a massive toll on us physically and mentally. Sending love to everyone still struggling xx

Lots of love @Kitcat122

Hi @Kitcat122 👋🏻 . Sorry that you're still having symptoms but really great to hear you're no longer having relapses - I guess that's a big step forward.

Thanks for the positive SSRI story @givemeanother - it's so easy to focus on the negatives/ side effects when you google. I already have sertraline here ready to take, prescribed by my GP months and months ago. To his credit, he speculated then about the relationship between Covid, the nervous system and serotonin, but at the time I felt like all my symptoms were being attributed to anxiety and I didn't really feel 'low' as such - just desperately ill.

Hi all, Im still a wheezy, fatigued, insomniac with constant tinnitus

No change here! I hope everyone is as o.k as poss.

Oh it might be of interest - my colleage and I took the antibody test in the summer (both seriously unwell since March) and we both got a negative, we re did one a few weeks ago, (as keyworkers) she got a positive & I got another negative.

@Ernieshere that is interesting. I wonder if your colleague was exposed another time or whether the test has a reasonable false negative rate? I also had a negative antibody test but am convinced I've had it...

So I'm almost 2 months on from coronavirus symptoms / positive test...I managed to do some stretching based exercises yesterday. The stretches were picked up as sport! Crazy before covid i walked 15000 steps and exercised 5 times a week!
I also went for a 20 minute walk...but I got really bad joint aches from the walk. My chest and back felt really sore yesterday too not sure if it's my asthma or post viral stuff. I just wonder when I'm going to be back to full health.

@amyj606 advice is to take it really easy. If you're getting aches, I'd scale back what you're doing. The earlier you do that, the quicker you'll likely recover. Learn from us who didn't know that earlier this year!!

I'm currently having a big niacin flush. I'd previously only flushed once on the first day of taking it, but today had very little breakfast which I expect is why - meant to be chairing a meeting in half an hour and hoping it passes!!!