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

@AndsLee that's great to hear the last 2 days have gone well. I know how you feel about the anxiety - it kind of feeds on itself.

I'm still struggling here. My heart rate's still doing loop-the-loops whenever I move, there's a lot of heart pounding and I have that sort of clenched angsty feeling. So I'm big time resting and trying to stay calm and do lots of meditation. I'm using the oximeter regularly again to keep records of my heart rate (as advised by the physio) but I HATE that piece of equipment- it brings back so many unpleasant associations, and it makes me worry about my oxygen levels. As I already said, I was astounded by the discrepancies between my Fitbit and oximeter - regularly about 20 points out. I just need to stay calm and patient that this will resolve. The rash is still present but think it's lessening, and looking forward to starting the niacin.

@Whatnext2018 yeah I get lots of worsening sensations just before I sleep or on awakening. I'm sure it's because our autonomic systems are so out of balance, and everything sort of jumps into action when the body tries to rest.

@MillStone hope you're doing okay and that you're also finding the niacin of help? And @LetsBeSensible hope you're okay too, not heard from you in a while - which I hope is good news...

Hi @fedupofbed sorry you’re still struggling with your heart. It’s such a horrible symptom.

Several weeks ago I started taking L-Thiamine, after reading it can reduce the pounding sensation. L-T is an amino acid extracted from tea! But it has been shown to help reduce anxiety, ADHD, and more.

Paired with decent CBD oil, I’m feeling more relaxed, less poundy and sleeping slightly better. Might be chance or placebo! But Maybe worth a try to see if it helps. L-T is harmless enough.

Good news on the rash 🙂

The Niacin, not sure really. After the horrible relapse I’m still feeling groggy and sore but improving fairly quickly so maybe it’s helping.

@fedupofbed it's odd that you are getting a return of the heart pounding / PoTS like symptoms. Did they lessen and then get worse? Have you tried speaking with your GP to see if a diagnosis of PoTS can be made - you may be able to do this with an enlightened GP using a standing test. There's info on the PoTS U.K. website that can be passed to GPs, most don't seem to know much at all about PoTS.

Triggers for my PoTS symptoms to worsen include hormonal changes - Pre ovulation and before my period, histamine containing foods, sitting for longer than an hour or so, hot baths, being already fatigued, being dehydrated, not having eaten enough salt, eating too many carbs .

Btw I have realised the same thing about my Fitbit, it recorded a much lower peaking heart rate during the tilt table test so I no longer pay much attention to that. It also made me more anxious. I just look at it for steps now and try and do 3000 a day although often when wfh it's much lower, I need to push myself to try and walk about the house a bit more - or start to venture out.

@MillStone hopeful that you will see an improvement from here on in. Has your herbalist recommended anything?

Thanks @fedupofbed I’ve been reading from time to time, unfortunately I had a rough few weeks and have not been on good form.
I’ve been fed up in part due to that old chestnut- zero medical attention. I’m on a waiting list approx 18 weeks for a CFS appointment and my ENT appointment got rebooked for Feb. I lost my voice again and my fatigue is so bad, I’m only leaving the house once a week really.
I have a pip assessment by phone next week and I’ve bought a mini PA speaker so I can amplify my whisper.
I know a lot of people are in the same boat, but I’ve actually not been seen by a dr since I got ill. I email the surgery for my med certs and they just issue them. One or two calls from the GP (where I mostly couldn’t speak). No one has so much as looked in my throat.
I will be staying with relatives for a few weeks over the holidays so that will be a good change and I will get to socialize face-to face.
Anyway sorry for the moan but thanks for thinking of me x

Aw @LetsBeSensible that sounds really really tough and demoralising. I'm conflicted about the care from my GPs - I can email them any time and they'll reply quickly, they're receptive to any requests I make for meds and referrals but they will not see me in person, and like you I haven't had a face to face since early March and a phone call since about April. I have to be very proactive and it's exhausting. I'm so sorry you're dealing with all this, and please do moan, you're entitled to! I hope that your stay with relatives does a world of good. Not that I've done it much lately because of lockdown but visits from friends have really lifted me. Hope the PIP goes well too and not too stressful.

@MillStone thank you I will add l-theamine to my list! Could you recommend a brand of CBD oil? I used it much earlier on but wasn't really confident with what I bought (DH is now using it 😏). I'm glad you're improving again now and hope it continues.

@TiddleTaddleTat I think the heart symptoms have always featured a lot with me which is why I saw a cardiologist back in May - he never tested for or picked up on POTS though so I thought I was over reacting. I nevertheless followed the general advice I found online and things did improve. It's all ramped up since my cold/relapse end of October. One theory I have is that my relapse is mimicking some of my original cycle of symptoms - so I was bed bound and flu-ey, then lots of SOB episodes, and now the heart stuff. Also I'm more acutely aware of it because I'm monitoring with the oximeter, which is definitely amplifying the anxiety (and therefore not helping my recovery). Another theory which the physio suggested is that if the hydroxychloroquine caused a rash, it could also be exacerbating these symptoms. Who knows? I'm giving it a few more days to see if it dies down a bit before I go back to the GPs again... I'm doing all the right things with fluids, lying down, etc, I guess they could prescribe beta blockers?

Phew, essay over! Wishing everyone a pleasant, productive sleep.

@fedupofbed I’m on 1000mg Blessed, at the moment. The price is a bit 🥺 but they are good.

blessedcbd.co.uk/product/cbd-oil-1000mg/

I also have a bottle of 1200mg Love Hemp which was a 1/2 price Black Friday purchase but I haven’t tried yet.

love-hemp.com/collections/shop-all-cbd/products/love-hemp-cbd-liquid-oil-drops-1200mg-4-30ml?variant=33166686060643

@TiddleTaddleTat hope you’re well, I had to miss my last herbalist apt because it during that relapse I keep harping on about. I plan to book a follow-up in the new year but In the meantime I have booked an apt with a local naturopath, to get a slightly different perspective.

@LetsBeSensible sorry you’ve been struggling. Sounds exhausting. GPs have come under a lot of fire and it’s easy to see why. It’s so frustrating that as the gatekeepers of the NHS they can be elusive and dismissive. I hope you have a nice break over Christmas 🎄

Ok. So today is day 2 of taking HCL supplement in the mornings in addition to the DAO food supplement, multivitamin, vit D, probiotics and turmeric. I have to say, I missed a day in between (yesterday). I'll report back in a week or so...

Thanks y’all. I’m a bit gutted that I won’t have any good medical evidence for my PIP assessment too, which is next week.
It’s not just the GP’s fault. But they made the wrong referral initially. Then my CFS referral went through and the consultant didn’t call me for the appointment then discharged me. Then it took two weeks to get another GP referral. Now I’m on an 18 week wait list.
The ENT assessed me by phone and booked an appointment. The day before it, they called to say it was being rebooked for February.
The local “support” group the UC referred me to was supposed to help with shopping, they never called back about that (she was off sick) not heard from her in 6 weeks.
I’m burning through money paying for food delivery for small top up shops as I can’t rely on my neighbour for everything, plus she’s out at work every day.
I just feel like I’ve fallen through all the cracks but I suppose this is what happens to people.

@LetsBeSensible - All sounds so very stressful. Would a call to CAB help do you think?

Unfortunately, I'm not feeling any better. I wish I were. I have better days than others but certainly I would say I'm on a downward trajectory. I think the lungs are certainly my worst problem as they cause me the most anxiety. Sometimes I am more breathless than others, sometimes it's more painful. Today it's both, which is a bummer.

A lovely friend of mine gave me a bumper lot of vitamins etc and I have vowed to lose weight, as I feel like such a fool for being unhealthy and subjecting myself to this. But i can't work out what improves or worsen things. Except that driving seems to make the pain worse.

I have these strange gasps for air which are getting more and more prominent. In the past week or so they have progressed to being a very constricted breath and tightening of chest until the diaphragm (??) spasms and I take a sharp breath. Happens around once every 10 mins on average. Anyone else have this?

@Trumpsbigtoe so sorry to hear about your persistent symptoms, it sounds really unpleasant. Have you had any support medically? Any hope of a post covid clinic where you are ?

@MillStone interesting about the L-Theamine - this has just come up on a list I've found re. Natural mast cell stabilisers hoffmancentre.com/natural-treatments-for-mcas/?fbclid=IwAR0wfDSgSjkUbqc9hxQvHoPe-OmGIWSjeQBbhgYO19cbr9xMWPdwa5eq4a0

Hi @AndsLee I’m not sure if it would...I have no voice!
I’m fed up of emailing and getting no response, then if I phone I get “that” person who just keeps saying the can’t hear me.
I’ve not tried the PA system out on a phone all yet, on FaceTime it worked but there were still some words where I just wasn’t making any sound.

@LetsBeSensible I wonder if you could use something like Relay UK? CAB will have something like this available, for sure...

@LetsBeSensible I just don't know what to say, you're having such a tough time. Sending lots of love and roll on the Christmas break 💐.

@MillStone thank you again! I have to sort my filters out next so I can actually access any of these sites - they're all blocked at the moment.

@TiddleTaddleTat does that mean green tea is okay then for histamine diet? It's all so confusing.

For anyone who has the time or energy, I thought this functional nutritionist/naturopath gave a really comprehensive and knowledgable overview of many of the subjects discussed here such as MCAS, NAD+, POTS, the gut, inflammation, etc and helped me get my head around it all. Her summary of recommended supplements seemed to fit in with advice we've already gleaned from elsewhere.

Unfortunately I didn't feel like I particularly clicked with the naturopath I met with. I think I'll be saving my pennies for now and going with the more generalised advice from forums and this video. Maybe in the New Year I'll try again - probably with the organisation that made this video.

@AndsLee you’ve nailed it! Relay is exactly what I’ve been looking for. I knew there must be a se vice like this! This is amazing.

@fedupofbed great video ! I've only had a quick look but looks really useful so far.
Sorry to hear you didn't gel with your naturopath - it's really important for it to be the right person. Mine still hasn't got back to me on whether I can share her details!! I think she is completely swamped, but I will ask her in the next appointment we have in a couple of weeks

@fedupofbed oh re.green tea I don't know really. I think it is both a blocker of DAO and a mast cell stabiliser, but quite potent in the latter, which might equal out its effects? Only way is to try. I haven't had great experiences sampling it as I think the caffeine doesn't help PoTS symptoms but I'm going to try again.

So I've started my new asthma pump (fostair) so let's see how that goes...I've still got a weird ruttle in my chest when I breathe hopefully it clears. My joint aches don't seem quite as bad but I feel super fatigued today even after a good night's sleep. I'm wondering if anyone can offer advice on some immune defence multivitamins? I've had a google but its quite a minefield! Thanks

Clipper, do a good decaf green tea. It’s water filtered to remove the caffeine 🍵

So..we can drink green tea now? I drank it lots at the start as read it helped with inflammation, but then read it was high histamine so stopped 🙈🤷🏻‍♀️

@Whatnext2018 I have no idea, the info is contradictory
In the video that @fedupofbed posted below it's a no for green tea, but also suggests that full compliance on the diet should be for about 4 weeks, then start to experiment with adding in higher histamine foods. Worth a watch, it's a really comprehensive overview.
Worth noting though that some of the more general advice won't apply to everyone - eg. The suggestion of licorice tea, I thought this would help as is often recommended in adrenal fatigue and I have low cortisol. However I found it increased my palpitations quite considerably.
There will be lots of individual variation.

Yes I would agree @TiddleTaddleTat , I thought it was a great overview, but not everything applies to everyone. She also recommended rooibos tea as a good healthy and low histamine alternative if you're missing your cuppa - lots of antioxidants. Yet another novelty thing to add to the shopping basket (it was pumpkin seed butter, pomegranate and macadamia nuts last week 😊).

Oh and thank you for thinking of me with your naturopath @TiddleTaddleTat 🙏🏻

@LetsBeSensible chuffed to bits that Relay is helping... Xx

Yes Rooibois could be a good alternative. I've also really got into other herbal teas - dandelion leaf and root (for supporting the liver, as I have Gilbert's syndrome)
Tulsi tea/holy basil - recommended in that naturopath video and also by my naturopath
Whole flower chamomile - great antihistamine and so calming

I drink at least one cup of these a day. Buy them as whole leaf from organic herbal remedies website, as they're all organic. Pricier than supermarket ones but maybe something to request for the stocking / xmas pressies etc ?!?