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 Post subject: Re: My experience.
 Post Posted: Thu Apr 07, 2022 10:33 pm 
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I hope that it does give you some relief!

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 Post subject: Re: My experience.
 Post Posted: Thu Apr 07, 2022 11:14 pm 
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Thanks Steve, i had hoped that the Long Covid induced PTSD that appeared to come from nowhere around Sept/Oct last year was the sting in the tail of Covid for me, in that my sleep pattern would return to normal when the PTSD was treated with therapy, or at the very least be at a manageable level.
It was a real surprise for me that not only did my sleep issues persist, they actually became worse in that my day/night sleep pattern has now done a complete 180 and no matter what i do i can't get even close to a normal sleep pattern... antihistamines did work temporarily for a few days at a time but my body clock would day by day, one hour per day, slip back into full night/day sleep reversal and there was nothing i could do about it. i.e. No matter when i went to bed i'd lie awake unable to sleep until my body clock decided it was time to sleep, and day by day that would always slip back by an hour at a time.

I hesitate to call that insomnia now because this is different from the "insomnia" i suffered when i was at my worst with Long Covid, it's equally as painful but at the same time it just 'feels' like there's a different force at work... i can't find a better way to describe that and i have no idea what the "different force" is.

I learned a long time ago not to put all my eggs in one basket in the hope that i might have found something that will finally get me out of this hole, but at the same time i can't let this virus win, i have to keep pushing and trying.

I started this journey in Feb 2020 then in Aug 2020 when my health fell off a cliff and the medics had no idea what was happening to me, i was teaching them.
Because i caught the virus so early on and was unlucky enough to go on to develop Long Covid, every step has been me teaching them and it appears that i still am.

This is just another step in what i really hope might be the last step.
I seem to be fortunate in that i finally seem to have found a GP who takes a genuine interest in Long Covid... i won't go into how i know that but i can't think of any other reason why she'd point me in the direction of a treatment she's not allowed to prescribe.


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 Post subject: Re: My experience.
 Post Posted: Sat Apr 09, 2022 1:41 am 
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This is likely a bit off-topic for this thread but i remember this performance by Andrea Bocelli during the first lockdown that he streamed live for free, it almost feels like yesterday that i sat in awe and was reduced to tears:

Andrea Bocelli: Music For Hope - Live From Duomo di Milano:
https://youtu.be/huTUOek4LgU

I'm not religious and don't speak Italian so i do get a bit lost in translation, but omg does this man have a voice, so much so that my wife will probably kill me when she finds out i spent £310 three weeks ago for 2 non-refundable tickts to see him live in Glasgow in September 2022.

Should i manage to get over the remnants of Long Covid and get some sort of like back then i will of course tell her sooner rather than later, if not, i'll put off the potential divorce for as long as i can lol

Seriously though, my wife has been outstanding so far so i expect that apart from an eye-roll and a bollocking she'll probably be right behind me... and kill me after the concert for spending so much!

I haven't had much enjoyment from life over the last two years, the norm has been to try and set a goal and focus on that... at this time this is nothing more than yet another goal, i hope that it could equally be a celebration that should i manage to shake of the remnants of Long Covid i can truly celebrate.

18:30 into the video gave me both hope and a reason to fight for such a long time, i couldn't resist buying tickets to see this him live, the price is irrelevant to me given how much i 'leaned' on his singing for so long.

I'm not sure how much sense any of that makes but given how much of the last 2 years i've felt i was clinging onto life, i hope it does.


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 Post subject: Re: My experience.
 Post Posted: Sat Apr 09, 2022 10:54 am 
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That is a wonderful goal to work towards! I certainly hope that it will indeed be a celebration for you.

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 Post subject: Re: My experience.
 Post Posted: Fri Apr 15, 2022 2:05 am 
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Thanks Steve,

Setting goals no matter how unachievable they may seem at the time i set them has been the one constant with hindsight that has kept me going through Long Covid... there have been many times when i really was on the cusp of despair and giving up.

The number of times i've bought tickets for something only to find out on the day i'm not physically or mentally able to go, but that was never the point, the point was to have something to look forward to in the future that even if on the day i wan't able to attend, at least i tried and i had something to aim for and look forward too.

From experience there really was nothing worse than having no reason to wake up the next day, more of the same was slowly killing me, setting goals gave me hope that tomorrow just might be different.

I'm not sure how much closer to getting my life back i am, this damn virus seems to have more stings in the tail than a collective of Scorpions (what is a colony of Scorpions called?) but i am slowly getting there when you look at where i was around this time last year... riddled with Long Covid and barely able to function.

On the plus side i posted elsewhere where i knew my wife would see that i'd bought the Bocelli tickets, her first words to me were... and how do you expect to pay for them when you have no income?

I'd be lying if i said she didn't make me squirm a bit (a lot actually!) but she gets it and didn't rule it out... we know each other so well that what she probably meant was she's not happy that i didn't speak to her first but secretely she's looking forward to the concert as well, at least i hope she did! :D


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 Post subject: Re: My experience.
 Post Posted: Fri Apr 15, 2022 10:34 am 
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Doddie wrote:
...we know each other so well that what she probably meant was she's not happy that i didn't speak to her first but secretely she's looking forward to the concert as well, at least i hope she did! :D


I do hope that you are able to go and enjoy the concert. :-)

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 Post subject: Re: My experience.
 Post Posted: Wed Apr 27, 2022 3:59 pm 
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Early signs of a good news update, i hope it is:

The melatonin that i ordered on 7th April from Biovea finally arrived on 25th April, it was shipped from Fontana CA.
I still can't get my head around why GP's are not allowed to prescribe melatonin in the UK, yet i can legally import it from a country where it's freely available (without any medical supervision)?
https://www.biovea.com/uk/product/detail/15011/melatonin-3mg--time-release--90-vegetarian-tablets/?deptid=0&cid=0&mid=0&kw=melatonin

Last night i took a melatonin tablet at 22:30 (i hadn't been awake long, i'd only woken up at 16:00 after 12 hours asleep due to sleep reversal) and by midnight i was fast asleep, it wan't the best night sleep i've ever had but when i did wake up during the night i was easily able to go back to sleep... what happened in the morning really surprised me... at 08:30 the sun hit a wardrobe mirror and reflected onto my face and it actually woke me up, that probably doesn't sound like a big deal but for me it was huge because for over two years now whether or not i was asleep during daylight the sun had not once woken me up... in fact, it's been normal practice for me to go to sleep during daylight because the sun has had no effect on my Circadian rhythm whatsoever.
Anyway, the sun woke me up and for the first time in over two years when i woke up i actually felt awake... for sure i still felt tired but that was probably down to my body not being used too a natural sleep cycle, in any case the tiredness "felt" very different in that the all over lethargy i'd been feeling for years was no longer there. My hope is that with a few more nights of 'normal' sleep pattern that that tired feeling might also dissipate.

On top of the melatonin, one of the probiotics i'd ordered that was developed as a potential treatment for Covid-19 and/or Long Covid arrived today 27th April:
For product details and study results etc, see:
https://yourgutplus.com/
https://phyto-v.com/

When i ordered the products above i thought i'd try which ever arrived first and then give it week or two before starting the other so i could try and gauge which one if any actually helped, but because the melatonin seemed to be really helping my sleep pattern and the probiotics were sitting on the table, i thought what the hell and took a probiotic tablet... now this is the interesting part, while my first vaccine shot in Mar/Apr 2021 did clear most of my Long Covid symptoms some persisted albeit they were much milder, but they did persist.
i.e. Lower back pain has been a constant 24/7 along with GI discomfort, the GI discomfort has been nothing like the GI pain i had pre vaccine but i was aware of it always still being there, the back pain was on a scale of 6/10; bearable but very uncomfortable to the point that if i often couldn't stand up straight.

About two hours after taking the probiotic i stood up and my back pain was completely gone and so was the GI discomfort, at time of writing that was 7 hours ago and there's still no back pain or GI discomfort.

This is only the first day after i took my first melatonin tablet and the same day i took my first probiotic so it's still far too early to know if this will be maintained, but the early signs are very encouraging.

What if any impact this will have on my other ongoing Long Covid symptoms (e.g. short term memory loss and lack of appetite) it's far too early to say but the early signs are very encouraging.


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 Post subject: Re: My experience.
 Post Posted: Sun May 01, 2022 11:36 pm 
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I sent this to the assigned Link Worker at my Medical Practice earlier tonight and i wanted to share it here because some of the information might be helpful for others if they read this thread, it is word for word apart from the redacted names and one typo for my awake time on Friday (the original email said 1310 but should have said 1510).

The usual caveat of always consult your GP before starting any course of treatment applies.

Quote:
Hi xxxx,

As promised this is a follow-up to let you know how i'm getting on, so far it's all very encouraging but as you'll see if you read on it's not easy to put into a few words.

I'd also appreciate it if you could share this with Dr xxxx because when i spoke to her about Melatonin i asked her if she wanted to know how i got on and she said yes.
Also, since i last spoke to Dr xxxx i found out about a probiotic that has literally blown me away that i strongly suspect she'll want to know about if she doesn't already know about it, it's had a dramatic effect on the other few remaining symptoms that have persisted in me.

I ordered Melatonin direct from BIOVEA (90 x 3mg tablets) on 7th April:
https://www.biovea.com/uk/product/detail/15011/melatonin-3mg--time-release--90-vegetarian-tablets/?pid=15011&name=melatonin-3mg--time-release--90-vegetarian-tablets

The Melatonin came from the US so it took a while to get here, delivered on Tues 26 April, i have been taking one tablet nightly about an hour or so before i go to bed and oh my word did they have an immediate effect!
So much so that it's almost like i'm having to learn when to go to bed all over again, the sleep reversal and excessive time asleep stopped that night (26th), i can't tell you how good it feels to be woken up by daylight again!
I've been keeping a sleep diary i.e: Detailing when i've taken a Melatonin tablet, when i go to bed and fall sleep, when i wake up. I won't break this down into all the details suffice that the hours asleep says it all:
Tues 26th: 8 hours 30 mins (awake 0830)
Wed: 7hours 40 mins (awake 0740)
Thurs: 8 hours 30 mins (awake 0900)
Fri: 12 hours (this was probably my lack of discipline because i stayed up watching a film until 3am, won't be doing that again because my wife thought my sleep was reversing again) (awake 1510)
Sat: 7 hours 45 mins (awake 1015)

Moving onto the probiotic that i stumbled across while waiting for the Melatonin to arrive and which i've been taking since Wed 27th April 2022, i won't go into any detail about the probiotic itself because "The UK Phyto-V Study" website is self explanatory and rich with information.
The UK Phyto-V Study
http://phyto-v.com/

The product from the study above that i'm using is 'YourGut+' and it has literally blown me away because it's cleared out (if that's the correct way to put it?) all of my other remaining symptoms!
https://yourgutplus.com/

Those symptoms were:
1. Back pain, to the point it was all but impossible for me to stand for any length of time and i couldn't stand upright at all.
2. GI discomfort, nothing like it was a year ago (pre my first vaccine that helped me so much) but it was always there and i was aware of it.
3. Memory recall (short-term memory issues?), even though the bulk of the brain fog cleared up after my first vaccine i still had issues finding words that i know i know, along with losing my train of thought while speaking meaning i had to stop mid sentence.

What struck me most about the probiotic was that within 2-3 hours of taking my first capsule ALL of my back pain and stomach issues had gone completely.
My memory also appears to have improved, it's hard for me to gauge if that's true but i've not felt frustration once since taking the probiotic, for a second opinion i asked my wife tonight if she's noticed any improvement and she not only agrees there's been a marked improvement she went on to say that my overall demeanour, confidence and activity have all improved remarkably.

Obviously i can't know for certain which supplement is responsible for all of the above because it's anecdotal to me but i can say this... i forgot to take a probiotic on Friday morning and by lunchtime my stomach was starting to jump through hoops again and i could feel the pain in my lower back returning, it was at that point i realised i'd forgotten to take the morning probiotic, i took a capsule and 2 hours later the back pain and stomach discomfort had gone again.

My hopes have been built up only to be dashed so many times over the last couple of years that i'm hesitant to say i think i might be on the final stretch now, but this does feel different and if it can help someone else, you have my full permission to share this with whoever and wherever you or Dr xxxx see fit.

Best regards
xxxx


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 Post subject: Re: My experience.
 Post Posted: Sat Jun 04, 2022 12:02 am 
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I think i'm ready to sign out from this thread, at long last i really believe i'm in a period of convalescence.

Melatonin was a game changer for my sleep reversal, the probiotics Youtgutplus along with Phyto-v continue to work for the remaining symptoms.
I still have a way to go with re-adjusting to 'normal' life, but with time i'm confident i'll get there.

What a journey this has been, from being perfectly healthy to not knowing if i'd survive too see the sunrise the next day, my life turned upside down and feeling helpless with no control nor help.

I don't know if this thread has helped anyone else but i know for certain that it helped me when i had nowhere else to turn, i'll never be able to put into words the dark times i've been through and what it meant for me that i was able to use this thread as an outlet for my desperation.

Jay, Steve, Joan and everyone else who was supportive all i can say is thank you from the bottom of my heart.

One of my first posts about Covid-19 was the live performance by Andrea Bocelli during the first lockdown, April 16 2020, i can't think of a more fitting way for me to end "My experience" than during the period when it all began:

Andrea Bocelli: Amazing Grace – Music For Hope (Live From Duomo di Milano)
https://youtu.be/bpXwOSHTwsY

Thank you.


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 Post subject: Re: My experience.
 Post Posted: Sat Jun 04, 2022 1:51 am 
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So glad that you are on your way to a return to normalcy! Thanks for sharing your experiences.

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 Post subject: Re: My experience.
 Post Posted: Sat Jun 04, 2022 5:32 pm 
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I'm so pleased to hear that you are on the road back to normality and we have in a small way helped you on your way. :)

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 Post subject: Re: My experience.
 Post Posted: Thu Aug 04, 2022 12:05 am 
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There are no words or ways for me to explain what i've been through, the sad fact is that even now unless you experience Long Covid first hand you won't have any idea what it's like to live it.

The really odd thing is, if you can remember that far back, i asked you all not to fall foul of the virus, yet i fell off a cliff from it!

It is what it is and thankfully i seem to be coming out the other side... omg has this been such a long road to realise what a long journey this has been.

I'm no longer receiving mental health support, mosty because i don't feel that i need that any more, there are issues that still need to be resolved, but how much and to what extent are still up in the air.

What happens next, only time will tell, to be honest, i'm close to giving up because finding fact over fiction is getting harder by the day.

I've been fighting against this virus for more than two years now and i've never felt so alone as i do now.

cf: https://youtu.be/0-EF60neguk

Context is everything.


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 Post subject: Re: My experience.
 Post Posted: Thu Aug 04, 2022 10:40 am 
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I'm glad that you seem to be coming out the other side of long COVID, but sad that you have been dealing with this for so long. I've been seeing more attention being paid to long COVID by science, but so little appears to be understood about it still.
With the latest variants still raging, it astounds me that most people are acting like the virus is over and/or it isn't a big deal -- despite the fact that there remains a pretty significant risk of lasting symptoms due to long COVID. I've seen several reports that it could be 10% or more of COVID cases that go on to develop lasting symptoms. We still mask up when going to the store and we are now double boosted. When we are at the grocery store these days we are in a very small minority taking extra precautions with N95 masks on.
Don't give up, Doddie, you've come such a long way and science will catch up eventually!

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 Post subject: Re: My experience.
 Post Posted: Thu Aug 04, 2022 11:55 pm 
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Steve, you've been such a stalwart for me during this awful period in my life that i'll never be able to thank you enough.

Some of the phases i've gone through have ranged from the ridiculous (hallucinations etc.) to the sublime (out of charachter) but the one constant has always been none of them were the real me.

I've read reports from the UK that the numbers may be as high as 30%, but i've never believed that because the bar is set so low by the UK for what quantifies as Long Covid in the UK , the real number is probably 5-10%.

A Pre-print was recenctly published about Long Covid, i'm not convinced about the validitiy of the paper, the pigeonholing of symptoms seems to me to be wrong but time will tell during the peer review process,
Profiling post-COVID syndrome across different variants of SARS-CoV-2
https://www.medrxiv.org/content/10.1101/2022.07.28.22278159v1

It's good that the focus finally appears to be towards Long Covid (Fwiw, i spell it that way because it's not only easier to type, but also because it was how it was first worded when i found out that Long Covid might be a thing... actually it was Long Haul Covid but that's symantics.)

Dr John Campbell has an interesting (i'd add depressing) take on this:
Some permanent long covid:
https://www.youtube.com/watch?v=F7x5LcUaUVQ

I don't intend to give up any time soon but it is gettinge harder by the day to remain positive, i have built up feelings of anger that i want to unleash on the Scottish Government for not doing more for people like me, i.e. there are still no Covid Clinics in Scotland and i can't understand why not, until i get over this virus i can't begin that fight.

My world has been turned upside down and ripped apart and no-one outside of a few seem to care... and that really hurts, what makes it worse is that by the day i see more and more people like me on the fast lane to hell.

It is so sad and shouldn't be happening.

No-one desrves to be left feeling alone.


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 Post subject: Re: My experience.
 Post Posted: Fri Aug 05, 2022 9:26 am 
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Sorry to hear how you feel but I can understand why you feel that way. Following Kate Garaways's journey with her husband and how he is still suffering makes you realise just how bad it still is.

I hope you continue to travel the path of recovery you seem to be on and do end up completely back to full health, all the best Doddie. :D

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 Post subject: Re: My experience.
 Post Posted: Fri Aug 05, 2022 9:55 pm 
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Thanks Joan, it really can be a horrible condition.

Myself, i don't mind admitting that i seem to be stuck in some kind of rut now, when i returned to work in June 2021 and my employer basically forced me to resign i spiralled into the depths of hell of mental health issues and sleep related issues... had my employer supported me at that time when i returned to work i'm very sure i'd be over Long Covid now, but that they pulled the rug from under me after suffering from something that even clinicians couldn't explain was excrutiating, it very nearly broke me completely and has left me over a year later still trying to pick up the pieces of what they did to me.

It was bad enough that i was never hospitalised, when i should have been, to then try and have medical care over the phone when i could barely function let alone speak... the one constant/goal that i clung onto was to get back to work because if i could manage that then i'd know i at least had a chance of surving what for me nearly a year later was a 'thing' that i thought i was going to die from.
When that was stripped away from me... omg :cry:

Joan, i didn't know who Kate Garaway is but i searched for her husbands story on the web, and his story is exactly why i started this thread, it is heart breaking.
What the mainstream media, and people in general don't seem to understand is how widespeard this issue is (until it happens to them), it's almost like it's a hidden dirty secret that no-one wants to talk about... and i don't get that.

Whether the percentage of people who sufferer from life changing Long Covid is 1,3,5,10,20,30%, the fact is that millions of people every day are being infected by Covid-19 and even if it's only 1% who go on to develop debilitating Long Covid, the numbers are in the 10's of thousands, every day!
~Just think about for that a second~

As for me, because i feel like i'm stuck in some sort of rut i'm really not sure what to do next, i should probably reach out to the link worker my GP assigned to me around this time last year because the status quo is not working for me in the way i anticipated... i anticipated i'd be back at work by now, if not in work then actively looking for work.

The scariest part is that i haven't left the house/flat for 2 years now except to take rubbish down to the communal bin, or to get my vaccine shots... and that can't be right.
In a way you're kind of seeing me come to a realisation, a lightbulb moment if you will, that i didn't foresee until i started typing this.

I need to process where my head space is right now and it might take a few days, it seems there may be more to my experience than i thought.

Damn this virus! :evil:


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