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Covid

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Long Covid support thread

744 replies

fedupofbed · 21/12/2020 11:26

A thread for those with ongoing Long Covid symptoms.

Some resources very kindly collated by @letsbesensible in the last thread:

UK sepsis trust vids go.mumsnet.com/?xs=1&id=470X1554755&url=m.youtube.com/playlist?list=PL16uJ-CyqxJIJpdLhf-Ccjhdvf4uNBIie Physio for breathing pattern disorders www.physiotherapyforbpd.org.uk/
Dysautomnia webinar video go.mumsnet.com/?xs=1&id=470X1554755&url=vimeo.com/442593497?utmcampaign=5370367&utmsource=affiliate&utm_channel=affiliate&cjevent=38c74aa9fd7b11ea82d1002e0a180512 Articles, links, Resources c19recoveryawareness.com
Ricovr project videos

OP posts:
Indecisive12 · 30/12/2020 11:28

Thanks. I do feel quite grateful that my GP has acknowledged Post-Covid Syndrome so early on but also sorry you early sufferers had to do the suffering and most likely didn’t get an as receptive response. I joined a Facebook group but found it quite overwhelming, I’ll try again but have read back through all the lungs/Long Covid threads on here and see a very familiar pattern.

TiddleTaddleTat · 30/12/2020 13:20

I'm suddenly totally ravenous ... insatiable hunger. Could be the weather or ... maybe a good sign ?
I have also had to drop down the dose of digestive enzymes as it seems I'm producing more stomach acid myself now.
Feeling a bit tired today but still going strong

givemeanother · 30/12/2020 14:11

@TiddleTaddleTat that does sound positive. I get ravenous when I'm feeling well and often overdo it so tread carefully!

Also, which digestive enzymes are you taking? I had been taking apple cider vinegar but stopped once starting Famotidine...tight chest, fatigue and joint pain all retuned a couple of days ago though - I suspect the chocolate, wine and smoked fish from Christmas was not conducive! So on a bit of a fast today as that's historically been the best way to start feeling a bit better...

givemeanother · 30/12/2020 14:13

On a more positive note my chest and back pain has been completely absent since starting famotidine (or the niacin stack or both combined...)

TiddleTaddleTat · 30/12/2020 14:32

@givemeanother that's good to hear (about famotidine) I'm hoping to get it prescribed at the end of January but need a clear echocardiogram first (it's the PoTS clinic who would prescribe it for MCAS)
Fasting would reduce your histamine levels so I understand how it would work. I don't think I could manage it though! I'm always hungry anyway and wouldn't want to lose any weight as I could easily become underweight
I'm on Nutrigest https://www.naturitas.co.uk/p/supplements/compounding-supplements/nutrigest-90-tablets-nutri-advanced?gclid=EAIaIQobChMI0K7I-X17QIVCrrtCh1UCwa6EAQYASABEgJkFvDBwE
Pricey , part of the stuff my naturopath recommends

givemeanother · 30/12/2020 14:41

Thanks @TiddleTaddleTat looks good - I'm going to add it to my bundle...

VulvaPerson · 30/12/2020 15:45

I feel so bad for you all. I 'technically' have 'long covid' according to my GP., mind she didn't diagnose it as such, just said she thinks thats what it is as no infection on my chest, no asthma etc. All I have is a persistent cough and still have no taste. Its not that bad except for the cough is making people look at me like I am a walking grenade, which is understandable. I have 'mild long covid' if thats a thing. Luckily, it went round the whole house but only me still having issues, so thats a good thing I guess. Feel so bad for those suffering badly though, this has been going on for 8 months for me now!

AndsLee · 31/12/2020 19:59

Hi folks. Hope you enjoyed Christmas!

So, update. I am still taking famotidine each evening, and has definitely improved things. Still taking an Antihistamine every 2 days. Supplements - multivitamin, HCL, DAO, Quercetin, Fish Oil, Probiotics, and some NAD+ for good measure.

But... I am on day 5 of a prescription for Montalukast. Oh My God what a difference! 'Breathing through dust' has gone!!!! Gone!!! I feel... Better. Like, normal better!!

TiddleTaddleTat · 31/12/2020 20:52

@AndsLee wow - great to hear it! How did you get the montelukast prescription? I asked the pots nurse about that but she said it was only GPs would do it. Mine hadn't heard of MCAS...

AndsLee · 31/12/2020 20:54

My GP actually suggested it!!

TiddleTaddleTat · 31/12/2020 21:11

@AndsLee amazing. Great to hear that there are some forward thinking GPs about on this. There is mounting evidence that treating long covid as MCAS results in significant symptom reduction.

LetsBeSensible · 31/12/2020 21:46

Great news @AndsLee, the wee GP has outdone himself there.
Happy new year everyone Flowers Cake I just had a little shudder as I wrote, this time last year we didn’t “know” each other at all, but I’m glad that now we have each other Smile

fedupofbed · 31/12/2020 23:29

What a year eh? Wishing all you lovely people much love, hope, health and happiness for 2021. I am so thankful for these threads over the months - for all the really useful info sharing, but especially for all of your kindness and support.

Didn't think I'd manage to stay awake till midnight, but hey, may just make it 🥂(alcohol free of course) 😊. Xx

OP posts:
Whatnext2018 · 31/12/2020 23:57

Happy new year all 🥂

On a 9 day on/off period 🤷🏻‍♀️With kidney stones too and weirdly, symptoms of long covid are a little less..

@AndsLee What is that drug?

AndsLee · 01/01/2021 00:04

www.nhs.uk/medicines/montelukast/

givemeanother · 01/01/2021 08:59

Happy Mew Year everyone - may our health return this year. Likewise so thankful to everyone for the information sharing and support.

@AndsLee I'm delighted to hear of your improvements. Are you also following a low histamine diet and if so how strict are you being? Would also appreciate knowing which probiotic you take and if it is a histamine friendly one...

I'm still free of chest pain (think famotidine is to thank for that) but have fatigue and achy legs, hands other joints etc. Also slightly tight chest...think this is all down to having indulged in a few treats over Christmas which was also ovulation time.

On hormones @TiddleTaddleTat are you still thinking of the mini pill? I've been doing some reading around and wondered whether natural progesterone would be more effective? Not sure if you'd considered that? Here is just one website I was looking at: www.larabriden.com/the-crucial-difference-between-progesterone-and-progestins/

AndsLee · 01/01/2021 09:12

@givemeanother I am just using Probio 7. As far as the histamine diet goes... I have eaten loads of rubbish over the past few weeks, and enjoyed gin and Baileys. Wine is still a little rough.

In your face Lond Covid... Haha...
bit euphoric

givemeanother · 01/01/2021 09:15

@AndsLee I so so so hope this lasts for you. Gives me hope...I need to be low histamine for a little bit though to reset I think, and also work on increasing stomach acid. Come on gut health!

TiddleTaddleTat · 01/01/2021 09:29

@givemeanother thanks for sharing that link, I have heard a little about wild yam cream - I think this is progesterone based??! But haven't read much. I was going to wait to speak to my naturopath in a few weeks first.

Likewise, she has highlighted about gut health being the focus. I do see a role for the 'leaky gut' idea here. I know it's not really a recognised term but my experience with developing food sensitivities (gluten , then oats) over the past several years, as well as psoriasis, and my sensitivity recently to alcohol, sugar, high histamine foods... the naturopath has said that the low histamine diet will be temporary while my gut rebuilds, I will then be able to break down the histamine without taking antihistamines etc. I feel that (if the theory is right) the missing link here is stopping the overproduction of histamines in the first place by increasing NAD+ through taking the Niacin.

Actually I've seen some positive developments with this already, with being able to reduce the digestive enzymes and no longer reacting to quinoa flakes, which gave me symptoms like I'd been glutened.

So there is a wider story for me on gut health which I think has probably complicated my recovery from long covid.

Oh, and happy new year all! I managed to stay up till 12 talking with DH. Also no alcohol, managed a glass of appletiser with dinner though!

Fishflakes · 01/01/2021 12:38

Happy New Year everyone and here’s to our collective good health for 2021.Brew
Thank you for all your ideas and links on these threads, I would not have thought to try low histamine if it weren’t for you and I think it has definitely helped me. Skin rashes have gone now and I have far fewer headaches and completely exhausted days.

LetsBeSensible · 01/01/2021 15:38

Just popping by to pass on a lightbulb idea I had.
I’m overdue for my opticians appointment and I wrote it on my priority list. Even though I can manage a bus and supermarket trip once a week I was a bit hesitant about a bus/optician day out. I remembered my elderly aunt had an optician call to her home.
Spec savers website- they will do a home visit!!!! If you are physically unable to get out. It’s free if you get free eyetests anyway.

confusednortherner · 01/01/2021 19:29

Hi All
Hope you don't mind me joining but think you might be the people I need!
I'm pretty sure I had covid in March before I could get tested. Since then I've had a terrible chest, never needed asthma meds before but now on fostair inhaler and had recurring flare ups/ chest infections. I've always been mildly anxious but this has become worse.
About a month ago gp gave me antibiotics as felt like I had a chest infection again. I perked up briefly but since Xmas day I'm just completely knackered and have near constant chest ache with periods where it feels like I'm being stabbed. I'm sleeping 11/12 hours and no idea how I'm going to cope back to work in school on Monday. I spoke to one of our gp's on Friday who's booked me a chest X-ray but didn't offer any other advice.

Whatapickle78 · 01/01/2021 19:36

Just popping by and saw @AndsLee ‘s news!!! 🥂🍾amazing! So pleased to hear this there’s hope for everyone Smile

Whatapickle78 · 01/01/2021 19:37

Here’s to a happier healthier 2021 everyone xxx

Fishflakes · 02/01/2021 01:59

Welcome confused and hope you feel better soon.
I’m feeling bad again. Some unavoidable life stress has set me back into headache, exhaustion, insomnia, and all the neuro stuff tonight. It’s very frustrating just when you need to be fit and well to deal with things.

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