Kate Stott @K8Stott Twitter profile

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Kate Stott

2 years

Up until now, I’ve shared snippets online of what living with #Longcovid has been like. I realise it’s hard to imagine a disease like this so here’s my story in pictures 🧵

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Kate Stott

@K8Stott

2 years

I want to say this really loud today. Microclot testing for #LongCovid MUST be rolled out in the U.K. and beyond asap. We have a bio marker now let’s sprint with it. Retweet if you agree.

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Kate Stott

@K8Stott

2 years

Today I was officially diagnosed with Long Covid and vaccine damage thought to have been AstraZeneca. My blood results prove it, this is not a political statement … my immune system just couldn’t cope with another hit. I’m immunocompromised.

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Kate Stott

@K8Stott

2 years

My final note: I went to bed in March 2020 with a sore throat… I now walk with crutches and require a wheelchair for any long distances. Our governments desperately need to wake up to the reality of this. Our UK strategy for LC as a nation is woeful.

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Kate Stott

@K8Stott

2 years

My nan after coughing up blood and her lips turning blue is in the back of an ambulance on oxygen tonight. Now being told there’s no available beds at our nearest hospital. Aberdeen Royal infirmary holds 900 staffed beds. This could be you or your loved one.

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Kate Stott

@K8Stott

2 years

Spent 10hrs on ward 101 at ARI yesterday after being referred for pulmonary embolism checks by GP. What triggered it? … mopping my kitchen floor! The nurses and doctors were incredible, they know what they are dealing with. They see long covid continuously now. 1/2

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Kate Stott

@K8Stott

1 year

It’s been all of 10 weeks since round 4. For those unaware a covid reinfection whilst having severe #Longcovid means weeks/months of additional worsening of symptoms. I already have vascular damage from long covid, I’m so utterly sick of this.

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Kate Stott

@K8Stott

9 months

My postman came to the door yesterday, he and his wife are both having tests run at our local hospital due to health issues. Yesterday he said to me - “Kate, do you know there’s a new virus going around, not Covid it’s called SARS” @P_H_S_Official take a bow 🙄

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Kate Stott

@K8Stott

2 years

First round of apheresis cut short as my blood was too thick. Clotting was happening too fast. Round 2 on Monday. #Teamclots #LongCovid

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Kate Stott

@K8Stott

2 years

4th infection? Swollen glands Fever Lost voice Lost taste and smell Shivers Joint pain Chest pain Negative LFT Antiviral hotline: yes it sounds like covid, PCR is much more sensitive but we’re not doing them anymore. It’s like March 2020 all over again.

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Kate Stott

@K8Stott

2 years

I’m heading to Germany on Tuesday morning to visit @BeateJaegerMD for #MicroClots and Hyperactive Platelet testing. I’m thinking about opening up a Twitter circle to keep everyone updated on the trip and outcomes. Let me know on the below if you would like to be added.

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Kate Stott

@K8Stott

2 years

In the past 6 months I’ve had: Strep throat - antibiotics needed Kidney Infection - 3 sets of antibiotics needed Chest infection - antibiotics needed Covid last week - antivirals needed This week kidney infection - antibiotics needed EVERY infection requires .. cont 🧵

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Kate Stott

@K8Stott

2 years

A week today and I’ll be on my way with my mum to start Apheresis treatment in Germany for #LongCovid I have to leave my husband and 3 children for 3 weeks to obtain treatment for #microclots . Our blood is clotting why on earth is governments not paying attention!

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Kate Stott

@K8Stott

2 years

They must be given the tests and treatments to adequately deal with the problem of #longcovid . The lovely porter who took my for my scan said “it’s unbelievable the amount of young folk I have seen, who’s bodies are ageing 50 years overnight” 2/2

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Kate Stott

@K8Stott

2 years

I promised an update re my trip to Germany and my #microclot testing. I completely underestimated how much the travelling would take it out of me. Blog and thread to follow soon. Results though .. positive for #microclots & endothelial damage 🤬

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Kate Stott

@K8Stott

2 years

I promised I would report back on my take of paxlovid and the if it impacted on my long covid. Started on the 27th of June. Finished by the 1st of July. All “usual” LC symptoms definitely improved. No spikes of HR over 100 on standing up. Definite improvement of PEM 1/3

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Kate Stott

@K8Stott

2 years

#4 😫

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Kate Stott

@K8Stott

2 years

From sore throat to triple blood thinners … the good the bad and the ugly. So what did a trip to @BeateJaegerMD in Mulheim, Germany have to offer… grab a cuppa. Let’s dive in. 🧵

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Kate Stott

@K8Stott

2 years

I will continue to speak up when I can but it is so hard to show the toll that advocating takes whilst being sick. We must #TreatLongCovid now.

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Kate Stott

@K8Stott

2 years

I am acutely aware of not wanting to moan here but by goodness when will it end! … just thinking out loud.

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Kate Stott

@K8Stott

2 years

We’ve arrived safely in Germany folks. I want to say a huge thank you to everyone who has wished me good luck. I’ve been blown away by your kindness. More so, how many LC sufferers have contacted me and needing more info on this journey. 1/2

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Kate Stott

@K8Stott

2 years

Every infection requires me to pause my biologic (immunosuppressants) injection for Crohn’s which means I then have to deal with Crohn’s on top of all that too. 4 covid infections, always followed by bacterial infections. I am constantly unwell on top of Long Covid.

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Kate Stott

@K8Stott

2 years

I woke up 19th of March 2020 with a sore throat, a really high fever and the most peculiar feeling of burning painful legs. Over the next few days my glands in my neck swelled and I lost my sense of taste in smell. No cough so I presumed it must be throat infection.

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Kate Stott

@K8Stott

2 years

Unlike my previous strep throat infections, I needed a second round of antibiotics. The symptoms this time seemed amped. Swelling in my glands, a continued fever and that strange burning sensation in my legs. The fatigue Is what I remember the most and how my body felt so heavy.

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Kate Stott

@K8Stott

2 years

#InternationalLongCovidAwarenessDay 3 Years for me and for millions of others.

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Kate Stott

@K8Stott

2 years

August 2021 Over the following weeks, I develop a limp and the pain in my hips and lower back creeps in insidiously. I’m now bedbound. My biologics are upped to weekly and I’m diagnosed with Enteropathic Arthiritis. Rheumatology now discharge me.

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Kate Stott

@K8Stott

2 years

April to July 2021 Following starting Biologics and B12 injections I start to feel normal again over the space of 3 weeks. I’m back to in person meetings with loads of energy and generally feeling on top of the word! Vowing never to take my health for granted.

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Kate Stott

@K8Stott

2 years

Over the next few weeks I tried to bounce back, I vividly remember my first bout of severe breathlessness carrying some food shopping into the house and immediately having to sit down. It was around this time in April 2020 that I developed rashes on my arms, torso and legs.

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Kate Stott

@K8Stott

2 years

July 2020 Things are feeling better, I’m having full good days. I’d later come to realise I was having PEM crashes after these “good days”

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Kate Stott

@K8Stott

2 years

I’m finding it hard to stay on my feet for any length of time. Blood pools are now a regular occurrence and so are my Crohn’s symptoms along with shortness of breath on any exertion.

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Kate Stott

@K8Stott

2 years

I crash almost immediately coming off prednisolone with the episcliritis , fatigue and bowel symptoms immediately returning. I lose function of my legs on a few occasions without loss of consciousness.

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Kate Stott

@K8Stott

2 years

My neck stiffens up and becomes really painful to move. I immediately cannot stand any light and begin being sick. I’m admitted to ARI and stay for a week. Various tests are conducted and I develop vertigo within hospital. Symptoms are attributed to being viral.

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Kate Stott

@K8Stott

2 years

At this time I’d also developed something that I later found out was called (episcliritis) an inflammation of the tissue of the eye.

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Kate Stott

@K8Stott

2 years

it’s suggested I try a short dose of prednisone. OMG for the first time in months I have energy! I decide the house could do with being redecorated and anything else I can get my hands on gets done. It feels like a new lease of life!

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Kate Stott

@K8Stott

2 years

I’m ok home and have been referred to cardiac clinic for further testing. It seems arthritis has now spread to my ribs and I have some postural blood flow issues. My second booster was just over a week ago. Off to go order some compression leggings!

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Kate Stott

@K8Stott

2 years

Initial concerns from Gp was that I was developing a connective tissue disease, my joints at this point were stiff and I was finding it hard to walk, so a referral was made to my local rheumatologist. I’m regularly loosing strength in my right arm which seemed odd.

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Kate Stott

@K8Stott

2 years

Continued …

Kate Stott

@K8Stott

2 years

August 2021 Over the following weeks, I develop a limp and the pain in my hips and lower back creeps in insidiously. I’m now bedbound. My biologics are upped to weekly and I’m diagnosed with Enteropathic Arthiritis. Rheumatology now discharge me.

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Kate Stott

@K8Stott

2 years

March 2021 I take a reaction to first Astra Zeneca vaccine, symptoms feel similar to covid infection it triggers another flare up of all symptoms that make me quite unwell for the next 3/4 weeks.

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Kate Stott

@K8Stott

2 years

August - December 2020 Appointments with Rheumatology point to post viral issues, problems with joints . I’m finding it incredibly difficult to walk some days. My lower back feels like I have two hot rods jammed into it. At this point my Crohn’s really ramps up.

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Kate Stott

@K8Stott

2 years

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Kate Stott

@K8Stott

2 years

At this point it’s important to mention that I had been under investigation for Crohn’s disease but up until this point I was managing flares through diet, no alcohol and supplements… things were about to hit a new level!

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Kate Stott

@K8Stott

2 years

July 2021 I go to bed one evening feeling woozy (spaced out) I try and sleep it off but wake up the next morning with the worst headache I’ve ever experienced. I have no thoughts, all I can think about is the searing pain and if it will stop.

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Kate Stott

@K8Stott

2 years

January - February 2021 I’m returned back on predenislone and my inflammatory markers in my bowel (calprotectin) are tested upon tapering off this time. (My levels hit 764, anything over 50 is considered high) I discuss biologics immunotherapy with my gastro team.

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Kate Stott

@K8Stott

2 years

It is a stark contrast of life prior to catching covid in 2020. But I am hopeful that things will change soon, better treatments will become available. My story is not unique.

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Kate Stott

@K8Stott

9 months

@ITV @Suej1959 Please shine a light on the #ME #MECFS scandal and the repurcussions of how it has now impacted millions of lives for those now with #Longcovid . These lives deserve a voice.

David J Black: Welcome to the machine

Prone to making the facts fit their theories, academics have, for decades, gaslit ME/CFS sufferers by telling them their condition was all in their heads. To compound matters, a pliant British media...

www.scottishlegal.com

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Kate Stott

@K8Stott

2 years

I’m very much housebound at the moment, I am still getting used to Pacing and not taking advantage of energy and pushing myself. I am regularly choosing between having enough energy to have a bath or cook within the space of a day.

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Kate Stott

@K8Stott

2 years

June 2020 I’ve been working from bed most days, running a support group for the Scottish beauty industry. Things are getting busy with government guidance. I feel the days are becoming a little easier but I’m fast asleep before dinner most evenings.

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Kate Stott

@K8Stott

2 years

4th day of 3rd Covid infection as a long hauler. I can safely say this is like a really bad flare up with a few different symptoms thrown in! The fatigue you experience with covid is what Long Covid sufferers experience every day along with the pain. #Treatlongcovid

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Kate Stott

@K8Stott

8 months

At times it can be hard, when your up against a system that wants to silence a subject in order to make it go away. Today however I know I did the right thing, I gave my evidence for the Scottish Covid inquiry. An interview that took over 2 hrs We won’t be silenced. #LongCovid

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Kate Stott

@K8Stott

2 years

June 2021 Im prescribed steroids for a bad bout of hay fever that sees me lose vision in one eye. Steroids work and all clears up.

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Kate Stott

@K8Stott

2 years

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Kate Stott

@K8Stott

2 years

Now it’s May 2020, we’re in the throes of lockdown 1.0. I’ve somewhat regained enough energy to look after the children in the garden throughout the day. As hubby takes over at 5pm most nights and I then head to bed.

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Kate Stott

@K8Stott

2 years

I’m on immunosuppressants and can’t obtain antivirals until I receive a positive test. Insane we can’t access PCR testing.

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Kate Stott

@K8Stott

2 years

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Kate Stott

@K8Stott

8 months

Things that have helped me get back to part time work after suffering from severe #LongCovid for 4 years 🧵: Apheresis in Germany x4 rounds Triple therapy - 1 year and ongoing Pantoprazole Invabradine Weekly biologics for Crohn’s disease & finally methotrexate. 1/2

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Kate Stott

@K8Stott

2 years

January 2022 to present I see a private neurologist in Glasgow that diagnoses me with Long Covid and ME. I then catch covid again in March 2022. The old chest rash reappears and every symptom then again gets worse.

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Kate Stott

@K8Stott

2 years

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Kate Stott

@K8Stott

2 years

So in the short PAX for me works only for the duration I am on it. Both times when taking it I have developed infections immediately after along with usual LC symptoms creeping in once the secondary infection has cleared. Hope this helps anyone curious. We need trials!

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Kate Stott

@K8Stott

2 years

September - November 2021 Exhaustion sets in to a level I’ve never ever experienced I’m sleeping 6hours some days and still sleeping through nights. I cannot wake up and it’s impossible to move. I feel like I’m operating at 5%

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Kate Stott

@K8Stott

2 years

The last 2 years haven’t been linear, I’ve had times of recovery, followed by infections and 5 vaccines that I now know for sure flare up my existing symptoms even more.

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Kate Stott

@K8Stott

2 years

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Kate Stott

@K8Stott

2 years

I start to become easily confused, I cant remember words mid sentence. Remembering names, places, what’s happened in a day becomes impossible.

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Kate Stott

@K8Stott

2 years

November 2021 I decide to muster up some energy to see ophthalmologist as my vision is so blurry and ptosis is happening regularly , I’ve now given up driving as I can’t see properly and I don’t trust my own reaction timing. It’s near impossible to remain standing.

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Kate Stott

@K8Stott

2 years

December 2021 I’m finding it hard to stand. Breathing is really difficult when doing things. Especially when climbing stairs and picking things up etc. my Sp02 drops on a regular basis.

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Kate Stott

@K8Stott

2 years

So what’s improved? ◦I can sit up now for much longer periods ◦I’m not as hunched over walking ◦My energy envelope has expanded ◦I’m thinking clearer ◦I’m more awake ◦I don’t feel like I’m going to pass out when I’m standing ◦I feel less weak

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Kate Stott

@K8Stott

2 years

I take and allergic reaction to hair dye. 24hrs later I’m crawling up the stairs with vertigo and being sick. The next day im admitted to A and E with breathing difficulties. I’m quickly discharged and sleep for 2 days after.

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Kate Stott

@K8Stott

2 years

Dr Taylor said growing evidence indicated that Long Covid is a form of vasculitis - inflammation of the blood vessels. She said this explains why it can affect every part of the body. @heraldscotland please amend your figures. 175,000 now suffering.

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Kate Stott

@K8Stott

2 years

I start to develop ptosis (my eye literally closes by itself at certain points of the day) I’m in too much pain to take notice. I’ve developed tinnitus in my right ear. I feel all my senses are heightened and cannot focus at all.

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Kate Stott

@K8Stott

2 years

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Kate Stott

@K8Stott

10 months

I have always maintained that the messaging around #Longcovid has been diluted due to the spectrum of the disease. Most think a lingering cough or some achy joints and fatigue is no big deal. But most have never met someone on the severe end.

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Kate Stott

@K8Stott

1 year

Heart meds, anticoagulants x3 and double immunosuppression… that’s what enables me just to be able to walk everyday. You know what is Bollocks … the ignorance of this man. #LongCovid #Longcovidkids

Long Covid SOS

@LongCovidSOS

1 year

Today we found out that @BorisJohnson scrawled 'BOLLOCKS’ across a @DHSCgovuk document about #LongCovid He admitted in his witness statement that he didn’t believe #LongCovid ‘truly existed’ We now know that he thought it should be dismissed as "Gulf War Syndrome stuff"

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Kate Stott

@K8Stott

2 years

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Kate Stott

@K8Stott

8 months

@scotgovhealth @jenni_minto This is so wrong, I’m so happy for Laura that’s she’s felt some improvements but by crikey this even for 2024 standards is low. You could of got away with this in 2020 but not now. Get up to speed for the love of god.

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Kate Stott

@K8Stott

1 year

Today I want to thank the doctors who despite not always being supported by their peers, continue to do all they can for their patients with #longcovid who are suffering immensely with debilitating and often very serious damage to their bodies. Thank you 🙏

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Kate Stott

@K8Stott

2 years

And by PEM worsening I mean I literally can’t walk tonight. I’ve gone into slow Mo mode 🥴🥴

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Kate Stott

@K8Stott

1 year

The true reality is for those suffering with #LongCovid is that politics have now coincided with illness. Imagine politics getting in the way of cancer, diabetes or MS care. People are being actively denied care. Almost doesn’t sound true … but it is. #Dontlookup

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Kate Stott

@K8Stott

2 years

By 4th of July I had developed a throat infection and then a couple of days later it was in my chest. Anti biotics prescribed. This weekend has been gastroenteritis hell. Today and in particular this afternoon the PEM has hit like an absolute truck.

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Kate Stott

@K8Stott

2 years

2/3 I’ve received so many messages, email and texts that are well above any capacity of a Twitter circle. Therefore I will write a blog when I get home documenting all. I’m going to take this week off of social media, media in general and have a rest when I can here.

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Kate Stott

@K8Stott

2 years

A big thank you to @Fionasstalker & @BBCScotlandNews for helping me share my story and Dr @DeansKevin for his expertise on #MicroClots & #LongCovid . Big thanks to my two babies and my mum who is quoted too!

Long Covid: Mum puts hopes in experimental treatment

Kate Stott will travel from Aberdeen to Germany to get experimental treatment for blood microclots.

www.bbc.co.uk

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Kate Stott

@K8Stott

2 years

It’s been 3 weeks now on my triple anticoagulants therapy, Ivabradine & MCAS treatment. I didn’t want to write anything too soon albeit this is still early days but I am seeing progress.

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Kate Stott

@K8Stott

2 years

Hard choices emerge as link between AstraZeneca vaccine and rare clotting disorder becomes clearer

Some scientists suggest halving the dose might reduce risks and help protect more people from COVID-19

www.science.org

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Kate Stott

@K8Stott

2 years

@1goodtern Fully agree, I tested positive for microclots, endothelial damage and hyperactive platelets. iNR and APTT still off the scale low when tested after 2 months on triple anticoagulants. Venous oxygen at 41%. Huge emphasis needs to be made on clotting issues.

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Kate Stott

@K8Stott

7 months

It’s absolutely incredible that we were all made to doubt that a virus that killed many en masses wouldn’t leave millions with ongoing chronic health and disablement! #BREATHTAKING We were played whilst we suffered and people died. #LongCovid

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Kate Stott

@K8Stott

9 months

To my tribe, the ones that have been there, stuck by and to the ones that are working so hard for everyone with #LongCovid May 2024 bring you health and happiness @HelenMMGoss @angryhacademic @drclairetaylor @po_move @resiapretorius @dbkell @ShaneyWright @Daltmann10

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Kate Stott

@K8Stott

8 months

One for the newbies around here Special thanks to: @drclairetaylor for penning her wisdom. 👌🏼

Breaking: Covid is a vascular disease

and this is why we need to stop thinking about it primarily as a lung disease. I hear Lung Doctors say - "We don't see much on the X-rays in Long Covid." The Rheumatologists say - "We don't see...

www.drclairetaylor.com

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Kate Stott

@K8Stott

2 years

The biggest takeaways was, it was patient centric, my whole history was taken into account, including Crohn’s disease and past viral infections.

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Kate Stott

@K8Stott

1 year

@itsMalma To insinuate this post is for clicks is absolutely obscene. I ain’t sharing my health for notoriety Triss. I am infact on triple therapy but thank you for your advice re natto 👍🏼

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Kate Stott

@K8Stott

2 years

This is an ongoing thread and I’ll update when I begin my Apheresis treatment in November but for now. I’m happy I made the decision to go.

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Kate Stott

@K8Stott

9 months

UK take note. We’ve been telling you the truth all along. Governments, hang your heads in shame. … #Bernieknows

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Kate Stott

@K8Stott

2 years

This is progress on what has been a tough year between repeat infections and flare ups following booster shots. I’ll take any sort of progress right now. I’m no where near multitasking busy mum of 3 but I am able to have a bath without requiring 4 hrs of sleep after!

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Kate Stott

@K8Stott

2 years

Still walking with crutches and still need a wheelchair for any distance and the day I can ditch them will be the day I celebrate. ❤️

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Kate Stott

@K8Stott

2 years

I absolutely cannot fault @NHSGrampian and how efficient their immunosuppressed anti viral hotline is. I was assessed via call by a covid pathway GP and paxlovid delivered to my house in less than an hour! Thank you 🙏

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Kate Stott

@K8Stott

2 years

There’s risks and this may not benefit everyone. I underestimated how much the travelling would take out of me. It took a few weeks to get back to some sort of LC normal. With me able to stand, I obviously want to do more, the PEM hasn’t gone so trying to balance that is tricky

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Kate Stott

@K8Stott

2 years

Since writing that thread I’ve had 1 more covid infection bringing the total to 3 and in total 5 vaccinations. In all I’ve continued to have severe relapses of symptoms with my baseline doing more ups and downs than Boris Johnson’s political career.

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Kate Stott

@K8Stott

7 months

… Just Saying! #LongCovid

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Kate Stott

@K8Stott

2 years

Results: I tested positive for Microclots and Endothelial damage. The following pictures is a copy I received from Dr Jaeger.

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Kate Stott

@K8Stott

2 years

Why has no #LongCovid documentaries been commissioned yet? There’s a lot to cover and anyone reading that the science isn’t there yet… keep digging! Your move @Channel4 👀👀👀

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Kate Stott

@K8Stott

2 years

Dr Claire Taylor

@drclairetaylor

2 years

1/ 11🧵 Covid is a vascular disease 🩸. We need to stop thinking of it primarily as a lung 🫁 disease. I hear lung Doctors says ‘we don’t see much on the chest X-rays in #longcovid ’. The rheumatologists say ‘we don’t see raised inflammation on the blood tests in #LongCovid ’

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Kate Stott

@K8Stott

2 years

Will update everyone when I get home. Love Kate x

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Kate Stott

@K8Stott

1 year

@implausibleblog Yep so much so that I’ve now had 5 infections. There’s no immunity. It can lower your LC baseline quite considerably, mobility problems, pain worsening of existing damage or autoimmune problems. It’s a truly horrid merry go round.

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