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

This is an interesting video shared on the Facebook group m.youtube.com/watch?fbclid=IwAR0jlu6Kw7q1ewQ7X2YrJxJ_Z4RJ4VMMm7bOW5OGgD10mESuc41CeyviHFU&feature=youtu.be&v=vr2bb0b4X14

I've asked my naturopath about histamine intolerance, hoping for some advice from a dietary angle so I can at least experiment and see.

I've been eating lots of leftovers, fish, spinach, avocadoes, nuts...all high in histamine.

Interesting that tinnitus and anxiety can be symptoms too. I often get waves of anxiety like a lump in my throat, completely indistinguishable from any mental or emotional stress.

@TiddleTaddleTat Just been reading about this, I’m wondering if omega 3 supplements raise histamine then or are they ok?
I notice it mentions tuna, which I eat a fair amount of, plus tomatoes and avocados 😬tomatoes will be hard to eliminate from my diet.
Hoping salmon etc is ok as eat this weekly in my house.

Made sure to check the time on my phone this morning when I woke up for no reason. It was 3.30, I’d slept well until then (from around d midnight) after sleeping I was in and out of sleep until morning. It’s as if I’m aware I’m trying to sleep or to stay asleep, strange dreams too that my dp was cheating on me with one of my mummy friends 🙈really odd

I asked my herbalist the same question. I also enquired about a fast. Both answers were along the lines of - probably won't do much harm, unsure if they'll do any good.

People on the FB groups are trying fasts and some are swearing by it.

@BeautifulPark The burning skin is definitely better. I still have the odd "prickle", or feel some heat in my wrists, but if I put some cream on it usually stops. I anticipate it will get worse again in 7 weeks time, but each time this cycles through it becomes less intense in feeling.

I've come of Omeprazole and started taking an antihistamine each day. This seems to be helping. It never for a second occurred to me that I might have low stomach acid rather than high, but I think that's exactly what's going on here. @givemeanother absolutely taking probiotics, and now considering trying some digestive enzymes too!

I'm on board with this idea of brain-gut dysfunction. I've been saying all along I believe the gut is key here, central control as it were.

@AndsLee yes, absolutely the guy-immunity connection is key. The supplements I'm on for guy repair are probably why I had such a noticeable increase in energy levels. Definitely working with a naturopath or nutritional therapist is worthwhile, I couldn't have accessed the right products, quality or dosage without her input.

@Whatnext2018 I'm not sure to be honest, I'm only just arriving at the histamine party. I found this a good list mastcell360.com/the-mast-cell-360-starter-low-histamine-foods-list-why-you-shouldnt-use-most-of-the-online-histamine-foods-lists-if-you-have-mast-cell-activation-syndrome-or-histamine-intolerance/

Started this morning and... so far no tinnitus today

@AndsLee gut-immunity!!

@TiddleTaddleTat do you mind if I ask what you’re taking for gut health ?

I only take acidophilus with bifidus specifically for that.

I guess it’s probably person specific, right?

@MillStone taking digestive enzymes, colostrum, sacrimoyces boulardi, zinc, vitamin d, vitamin c, a b complex targeted at fatigue, magnesium, spatone, omega 3 oil, turmeric . Phew!

@MillStone yes it is, I wouldn't advise trying to do it without consulting with someone who knows your history and how different things might interact.

@TiddleTaddleTat thanks, that’s a list! Never heard of colostrum or sacrimoyces boulardi. Something to google.

Re magnesium, I’ve been taking magnesium bisglycinate (supposed to be great for pain) for months but I saw a comment on one of the FB groups that Broad spectrum Magnesium had really helped their Beaty heart. I’ve just had some delivered today to see if there’s any difference.

@TiddleTaddleTat Good advice! I think we're finally getting somewhere...

I'm currently taking Fish Oil (with Omega 3), Turmeric with Vitamin D, a super multivitamin with minerals, Probiotic and now Digestive Enzymes, and an antihistamine.

I wonder if there are any natruopaths here in the Highlands... strokes chin.

@MillStone could you let me know about the broad spectrum magnesium? I need to get a new bottle, mines magnesium glycol are

Glycinate!

@AndsLee so I have only just started to have what I would describe as 'breathing through dust' actually it's like my airway feels constricted, at the back of my throat and in my windpipe. Did you find anything that helped this at all?

@TiddleTaddleTat I couldn't find that many broad spectrum options so I went with this one:

www.hollandandbarrett.com/shop/product/bioglan-active-magnesium-375mg-60038460

It contains: Magnesium (Elemental), Magnesium Oxide, Magnesium Phosphate Pentahydrate, Magnesium Bisglycinate, Magnesium Citrate.

Who knows if it'll make a difference ... just trying anything which might help.

I'm also taking Lamberts Co-Enzyme Q10, plant stanols and sterols, vegan omega 3, turmeric, acidophilus with bifidus, quercetin, Lamberts Multi-guard Control, Vit D, B vitmin complex, gentle iron, Magnesium, Rhodiola Rosea and a herbal tincture.

@TiddleTaddleTat I'm hoping the antihistamines will help with this. It's definitely decreased since I have come off the Omeprazole and started the antihistamines. I have been given a Ventolin inhaler too, but it doesn't really do anything. I am sure the "breathing through dust" thing is gut related too...

Hi all, suffering a lot with reflux the last 7 days. Aunt Flo encouraging it as well. Got my CFS appointment next week.
Hope your histamine theory works!
Re magnesium- I often say the ONLY decent advice I got for CFS/ME that actually worked is Epsom salt baths (magnesium) absorbs through the skin, keeps skin soft, reduced muscle aches. I buy it in 10kg bags from eBay.

@MillStone thanks, I'll check that one out.

Interesting day of trying low histamine eating. Tinnitus almost completely absent for the first time in in months. It dialled down a lot since I started taking turmeric but today was much lower. I will persist and see if other progress is made. Low histamine is a tricky diet though and not for the faint hearted. I'm already GF and not having alcohol or much sugar so it won't be a huge leap but I do love my fermented food and cheese... still ...

Hi everyone,

Just to say, Im awake approx 3 nights a week from 01.30-05.30.

I have an appt with Audiology next week for the everlasting Tinnitus

I had to use my new inhaler today, after coughing & wheezing. Then the inhaler gives me the shakes for around 30 mins, but at least it helps the chest I suppose.

I still take Gaviscon. The G.P would only let me have Omperazole for 6 weeks, due to the risk of bone damage. I have to take calcium now.
They said because I am approaching peri-menopause age, the risk is higher.

I get nausea alot, the fatigue is slowly going, very very slowly

With regard to the three day fasting, is it this, then you’re better, or it has to be repeated on a regular basis?
Three days would be very very hard, but willing to try anything if it worked!

@Whatnext2018 I'm not sure about the fasting , personally I couldn't handle it - regular meals and snacks have been really important for me in maintaining energy (and I used to fast now and then before covid).

I suppose if you look at it from a histamine overload perspective, fasting might work as it stops the body taking in more histamine through foods? Might be easier and safer to start with trying to remove the highest histamine foods and see if there's a difference.

Well after my day of low histamine eating I had a very good sleep (best in weeks). I also had barely any tinnitus/ear buzzing but noticed it returned following high heart rate and/or physical exertion.

I've taken cetirizine (antihistamine) this morning to test the histamine theory as I'm working today (from home) and my heart rate is always more spiky with the stress of that. We'll see if it makes a difference.

I'm contemplating doing a 3 day soup fast next week. I'm in a different boat to some of you though, I have enough energy, and have never really been debilitated with the "fatigue" element... Hugs to those who are!

I definitely feel like the "breathing through dust" thing is still connected to the gut somehow, but definitely (and has always felt) like it's an allergy thing. I did mention this months ago to my GP and was dismissed, but this was before they referred me to the local mental health institution because they thought I was stark raving mad. He's now listening, and I have emailed across the article about BBB-Gut-Immune Axis. I've read different theories in the past and my brain has thought "maybe" while my instincts screamed "nah". In this instance, I think this is the right track.

I wouldn't be keen on taking SSRIs, however.

Looking back over the symptoms though, the "breathing through dust" that randomly comes and goes (like asthma), the lowered heart rate at times, the temperature fluctuations, the weird allergies, the rashes and burning skin, the bout of thrush all points to lower stomach acid and histamine connections, but I guess we were all punted Omeprazole because that's standard practice for GERD. Who knew low stomach acid could cause similar symptoms!

@AndsLee the thing I find surprising bout the histamine connection is that I assumed that would be for allergy type symptoms. My symptoms do not fit that profile at all. I haven't had much in the way of noticeable GI symptoms or hives, itching, etc. Even SOB or breathing through dust has been very sporadic and occasional.

As I've read more about histamine it makes more and more sense - its links to reducing stomach acid, to hormones (particularly oestrogen), immunity and the sleep/wake cycle.

A low histamine diet is really really hard though. I can barely eat anything, and if you are already very fatigued it is incredibly difficult. I went through a similar process when I was eliminating foods prior to arriving at discovering I had coeliac. It's well worth the effort though.

@TiddleTattleTat - I dunno, I've been wondering about the breathing through dust thing ever since I had those weird allergic reactions back in May during by first period. It was as if my body was allergic to everything! haha... The breathing though dust thing was then diagnosed as "laryngeal obstruction", but there still had to be a cause for this. I was told that would be to do with the GERD, but again, there still had to be a cause for the GERD. I wondered if the "breathing through dust" thing was a reaction to the gaseous element coming up from my stomach, like an allergic reaction. Almost like very very mild anaphlaxis (or however that is spelled, canna be bothered googling it). Like, asthma symptoms (hence the inhaler that did nothing). The throat irritation is part of this "allergy" type symptoms. All connected...