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

On doses... if it does say three times a day, given most dose recommendations are based on an average sized man, twice a day for us may be enough (my reasoning anyway).

I normally take half doses for things like sleeping pills that I know could knock me out and they work well.

I wonder what the naturopaths say about supplement dosage for women?

@givemeanother just seen your post - where did you read that about oestrogen and histamine? I’d love to see it! I’ve noticed my skin itching and rashes get much worse just prior to and during ovulation when oestrogen is highest. It might be I should stop the oestrogen (HRT) supplements I take during that time...

Thanks!

As a general rule I would ignore what is written on the packet in terms of frequency ( it depends on how much of the supplement is in each pill, which varies) so either go on what a doctor or alternative practitioner has prescribed/ recommended or follow the guidance that has been put out re Long covid.
I'm on quercetin combined with vitamin C and flavonoids and taking 6 pills per day that contain 190mg of isoquercetin (more bioavailable than straight quercetin) and take 2 pills between meals, so around 380mg x 3.
It does get complicated when you go into different varieties and compounds so that's why a naturopath's guidance has been so helpful.

@Givemeanother

Sorry I haven't replied sooner. I have had a relapse, which is a major disappointment.

As far as diet goes, I am with you. Sometimes I eat things and all is well, whereas other times I react, so I buy into the build up theory. I also find I get gassy too, so I reckon you are right - intolerence.

My GP has just prescribed me Montelukast. I wonder if this will help, along with the piles of supplements and two batches of antihistamines. I have been told to take aspirin for the pain.

Interesting - I relapsed when I had forgotten to take my DAO supplement. Now, this could be something, or nothing...

@Whatapickle78 here is the link where I read about histamine and osteogen - it's at the bottom of the article. I would want to do a bit more research around it before determining this is def right: www.urologyofva.net/articles/category/healthy-living/3673013/8-natural-ways-to-lower-histamine

@AndsLee thanks for your response and so sorry to hear about the relapse. I hope it's short lived...

@AndsLee oh no - I'm so sorry to hear that. You seemed to be making good progress so this must be really annoying. I hope this relapse is a short and sweet one for you xx

@givemeanother
Thank you! I will check this out... and may speak to my GP about it

@AndsLee I'm sorry to hear about your relapse and hope it's short lived 💐.

@givemeanother that's very interesting regarding the link between oestrogen and histamines. I've just had a quick google and learned that it's a bit of a vicious cycle so the higher histamines then produce more oestrogen and so forth. It interested me because it's the first possible explanation as to why my periods came back like clockwork when I got sick, after being irregular for years. I'm tempted to go back on the mini pill too - and I already have them in the house! But I'm just throwing so many meds and supplements in my body right now, probably best to stagger it.

Does anyone else get into a muddle with all the timings of their supplements, some with food, some without, some near bed time, others in the morning? I'm always forgetting at least one. 🤯

@AndsLee sorry to hear about the relapse. Interesting that you have made a link with not taking the DAO. I've just ordered some to hopefully have some treats over Christmas. I'm being very careful with my diet and am going to start expanding it a bit.

@fedupofbed I find the same with supplements. I printed out a list from what my naturpath gave me so I know what to take with meals. There's also a nice function on the people with app that reminds you.

@Givemeanother @Tittletattletat... So basically this may stop when we have our menopause? ;)

@AndsLee Unfortunately not... men have long covid , and many post menopausal women. Histamine occurs naturally in the body (and is just one of the chemicals released by the degranulation of Mast cells) and its relationship is oestrogen explains why some women see cycles in their symptoms. However with the mast cells still degranulating, histamine is still constantly produced.
One (relatively easy) and cheap way to reduce this is by eating a low histamine diet. It is hard but I would recommend it before introducing other hormones - personally I just find that I have always suffered quite unpleasant side effects with any hormonal birth control. But I appreciate this differs between people.

@TiddleTaddleTat - I have suffered pants side effects too... It's all part of an interesting picture though, isn't it. It seems like we are building up a similar profile... I wish the bloody medical profession would get on board. My GP seems to be a convert now though. I think he's maybe "using" me as information now.

@AndsLee I'm so impressed with your GP now, especially after all the trouble you had in the beginning. He seems light years ahead of mine. Hopefully the montelukast will help too as I see it's a mast cell stabiliser.

Yes I would agree with @TiddleTaddleTat re hormones. It's really complex. On a whim I tried to book a consultation with Dr Tina Peers as she is a menopause expert as well as MCAS, but unfortunately she's not taking any new clients. Saved me a fortune which I don't have at least.

I can attest to the big impact of stress on symptoms - despite taking all the supplements and adjusting diet.
Had a very stressful situation over the past couple of days, a night of extremely poor sleep, and my heart rate went nuts (150bpm sitting down?!) despite additional electrolytes, fluids etc for PoTS symptoms.
It also coincided with start of my period which always triggers PoTS.

Oh no, @TiddleTaddleTat that sounds terrible. Are you feeling any better yet? And hope the stressful situation has resolved 💐.

Oh no @TiddleTaddleTat I'm so sorry to hear that. Has you heart rate come down now, hope the supplements and diet mean it's very short lived.

@givemeanother @fedupofbed thank you, I'm not too bad. Today heart rate is still elevated but it seems PoTS like symptoms are the main impact I'm getting.
Given my heart rate spiked so Hugh yesterday I'm expecting some significant fatigue (PEM) but so far just tired, but not that whole body fatigue.
Have a whole day of working from home needing to sit up in video calls to get through though...

Hello all...

Relapse took about 5 days to clear. Seemed like a mini round of the original symptoms in warp speed and less intensity. I feel better for it though... I think this will be the status quo until it eventually peters out.

My doc was saying that Covid-19 is now being recognised as a blood vessel disorder, and that he is considering referring me to rheumatology. Has anyone actually been diagnosed with vasculitis yet?

@AndsLee that sounds positive. I had been worried about your setback!

Blood vessel disease makes complete sense...and interestingly the treatment is often steroids. I can imagine a future scenario where they've weighed up the benefit of steroid treatment for long covid vs. the side effects and know if there is a dosage/regimen that would help avoid what we've all been through.

My GP is still fixed on blood tests. Since I last updated on my health care i was referred to a covid clinic (not a long covid one) and they declined to see me because I had a clear chest X-ray and ecg. Without my knowing I also got referred to a respiratory consultant who really listened to me on the phone and said it sounded like long covid. He's arranged for pulmonary tests in early Jan and a range of bloods but I don't think my lungs are the issue. Even though I have a tight chest I don't think that's the lungs.

Spoke to my GP again this week and he's arranged more blood tests. Hormones, thyroid, diabetes, renal, liver, full blood etc. I haven't had these done since June so will be useful to see if anything's changed.

Hi all, @AndsLee that's great that you're through your relapse and that it was short lived.

I thought about vasculitis a while back, but the rheumatologist did lots of tests (all came back normal apart from the first ANA which resolved itself) and vasculitis wasn't mentioned. I just have to trust that he's ruled this out...

@givemeanother good that you're having more bloods. I feel like I should push for this again as my last were in May. Your lung issues sound similar to mine - I still found it reassuring to get checked out by a respiratory consultant though. It was good to learn my lungs were okay.

I'm a bit of a mess here. I just keep getting worse and worse, and I'm actually pretty depressed about it all now. My heart rate is showing no signs of going down, and I'm finding it difficult to do the basics of self care. I'm finally sleeping better at night (7 hours plus at last) but mornings are conversely worse. It's taking me an hour plus to drag myself out of bed.

I've just had a video follow up consultation with a breathing physio (referred by resp consultant) and she thinks my breathing is still a bit dysfunctional. She says my heart rate's worse because of deconditioning and that I need to work on muscle strengthening, especially quads and glutes. But this is such a fine line to tread... I'm terrified of making my symptoms worse, so sticking with the advice of the ME physio, ie just resting.

I have yet another consultation tomorrow morning with a cardiologist who I found myself - he has an in-depth knowledge of PoTS and seems to have seen lots of Covid patients. It's only by phone so he can't test me properly, but it will be interesting to see what he says.

@fedupofbed It will be interesting to see what he says indeed. I was diagnosed with a breathing pattern disorder, but no further referral to physio.

@Givemeanother Thank you for your thoughts! All good just now though. I am aware that I do react (quite badly sometimes) to chemicals, and this seemed to be the trigger this time...I think! I only think!

My new thought... MSAC and vasculitis. I think it is a combination. Hormones definitely play a part.

FYI - my regime just now is (and I do feel better generally despite the blip) - Turmeric, Multivits & Minerals, Vit D, Probiotic, HCL supplement (this has helped), Omega 3 Fish Oil and Loratidene (trying every 2nd day just now) in the morning, washed down with one soluble Aspirin. DAO Supplements (with Vit C and Quercetin) before each meal. Famotidene in the evening. Add to this now a script for Montelukast.

Today I feel good. I can feel a little rasp in my throat which is from a slight reaction to my perfume this morning (today is an antihistamine day so that is probably helping). Burning skin has subsided again - had another evil bout of this during the relapse.

I sent my GP a massive email today detailing all of my current symptoms, which in general haven't really changed for months. Requesting a 6 month review blood test, and a ANCA test for vasculitis.

I have also asked him to chase my referral to infectious diseases. I really would like the holy grail...A stool test to see if this miserable germ is still in my digestive system.

I have also asked him to note in my records that on the occasions that I called out an Ambulance in March/April, it would appear I was suffering allergic reactions, not bloody panic attacks! Having never had an allergic reaction before (and they were much more severe then) how the hell would I know what the air hunger/SOB/tight chest would be?? I want this noted.

Thanks @AndsLee can you share the brand of DAO supplements you use?

@givemeanother Here you go my love:
www.amazon.co.uk/DAOfood-Treatment-Deficiency-Capsules-Gastro-Resistant/dp/B07T811PFT/ref=sr_1_1_sspa?dchild=1&smid=A1XEEKGDJXEU2B&psc=1&keywords=DAO+Food+Plus&spLa=ZW5jcnlwdGVkUXVhbGlmaWVyPUFXMEk2SU1MOEQyMEgmZW5jcnlwdGVkSWQ9QTAyMzAwMjYxN1Y1QVdCUFhTV0JKJmVuY3J5cHRlZEFkSWQ9QTAzMzQxMTYyNjVLUjdMWEFNQ1k2JndpZGdldE5hbWU9c3BfYXRmJmFjdGlvbj1jbGlja1JlZGlyZWN0JmRvTm90TG9nQ2xpY2s9dHJ1ZQ==&tag=mumsnetforu03-21&qid=1607694623&sr=8-1-spons

@fedupofbed I'm so sorry to hear that things are getting worse for you...but the sleep is positive. It sounds like mornings are an issue. This is often the case in PoTS due to lower blood volume. I have been drinking more electrolytes the last couple of days due to having my period, and they certainly make a difference to the high heart rate.
I hope the cardiologist consultation goes well and leads to some concrete treatment for you.

Here I'm doing ok, heart rate still elevated since Tuesday night but feeling a bit brighter. Period is making me feel tired so I'm trying to take it easy where possible. Still folllwing the same supplement regimen.

Thank you @TiddleTaddleTat . Glad you're still feeling a bit brighter, long may it last and hope the heart rate settles back down again too.

I just feel so sad today 😞. Hopefully the consultant will help with some clarity tomorrow. The office staff from my DC's school have just sent me a beautiful bunch of flowers, and I can't stop crying! People have been so kind.

I'm still on the Quercetin, etc and have now built up to 200mgs Niacin. How much electrolytes are you taking? I'm using 1-2 sachets a day, not sure how much I can up it.