Dr Kerry Smith
@DrKerrySmith
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Former NHS GP. Hit by Covid-19 pre lockdown March 2020. Long Covid advocate - LongCovidDoc on Insta and ambassador for @covidaidcharity.
South East, England
Joined August 2021
On waking.11 hour fast.In throes of PEM -migraine aching muscle’s especially neck and shoulders
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I have been infected 5 times with Covid-19 over the past 2 plus years. These are my most recent T cell counts. No one seems remotely concerned. I am #MedTwitter.
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So my energy bill is £200 more than my #UniversalCredit. How do I pay my mortgage? utilities? Council tax? food? #pwLC #LongCovid.
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Acute Covid-19 infection number 6. Undoubtably still immunosuppressed. This will set me back massively again.
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I think I shocked my GP today talking about my long Covid. He said where would like to be in 1 year, 5 years, 10 years. I said in 1 year I would like to be out of the house more than 1-2 times a fortnight. I couldn’t see further than that. Also not dead.
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@FayNolan49 I had to organise this test privately as I was concerned with the number of infections I was getting.
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@fitterhappierAJ I thought you would have more to say considering you are reporting on T cells this week and here you have a living breathing ( just) person who has had Covid repeatedly with a reduced CD3/CD4 l/CD8 count 🤷🏻♀️.
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Again with the “mild”. Mild Covid leads to lung fibrosis, emboli, myocarditis, pericarditis, diabetes, dysautonomia, cognitive dysfunction, microvascular angina, peripheral neuropathies…. Losing one’s ability to leave the house safetly is not MILD.
A Zoë contributor has told of a super-spreader event in Somerset at a 60 th birthday where All guests were vaccinated and some with boosters and had a lateral flow test 24 hours beforehand that was negative. 14/18 developed PCR positive for omicron- but symptoms all mild luckily.
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Lots of chat on FB #covidpots group about wrinkled finger tips. Any idea #medtwitter? And no it’s not too long in the bath/ dehydration/ cold
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The truth of #longcovid is after my second bout of acute covid recently I have had increased angina chest pain, hypertension and daily migraines but I have no one to turn to about my concerns.
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Remember when I posted this? Low CD counts totally ignored by my doctors despite recurrent acute infections and continuing profound symptoms
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If I don’t work as a GP in the next 2 weeks I will get thrown off the “performers list” and all that training will be for nothing. And having already retrained after a career break bringing up my family I know with #pots #cognitivedysfunction I won’t cope with retraining 🧵.
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@fitterhappierAJ I can’t work, haven’t been able to since March 2020 due to physical and cognitive disabilities as a result of my initial Covid infection.
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As a GP whose only PPE was hand washing in February and March 2020 I totally agree. I have lost my livelihood as the result of the long term effects of a covid infection.
Docs were left "horribly exposed" to COVID-19 in the UK, "with a desperate lack of support provided for NHS staff and hospitals.
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@Ultracaustique Possibly I don’t know. 🤷🏻♀️ I am not an immunologist. All I know is that I go out with a mask - only to go to hospital appointments - and this is when I get reinfected.
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@LCLainey I think my night’s “sleep” sums it up. High fever, aching muscles and joints, burning ears and throat, fatigued, can barely walk, cough slowly working it’s way onto my chest. Feels very much like the original strain.
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The trolls are out now so I won’t be answering anymore comments.
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Which doctors in the U.K. are going to step up and prescribe #apixaban and #clopidogrel? People in South Africa and Germany with #longcovid are already being treated. I am not prepared to wait another 2 years for a #RCT.
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Or even be able to afford it. It’s opened up a lot of unhealed wounds. I am at a loss with what to do next. This is #livingwithlongcovid.
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@YouRAMoron3 @fitterhappierAJ Actually I don’t put myself in danger I am a single mum and most occasions is because I have had to nurse my children who had it. Despite aeration and mask wearing.
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I have POTS and Long Covid. I can manage a 15 minute car journey max and yet the nearest vaccination centre for my 14 year old is an 80 plus mile round trip.
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@cocuzzo_kaitlyn @ketaminh Probably Covid ruining T cells initially as I was fit and well prior to March 20.
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@RatedManatee I presume they could yes. It is a snapshot. My concern is that without living in a bubble ( and I am not far off this at the moment) I will just get reinfected again and push them down again.
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@MECFSNews I am a GP with #longcovid. It may amaze you but I always treated my patients with ME/CFS exactly as they were - mostly patients who had an infection that completely knocked them out. However this I had to learn for myself. I had no teaching at medical school nor as a GP.
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@JD202212 I was making huge progress physically. Was swimming without needing an afternoon sleep. Didn’t help my POTS or cognitive impairment though.
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@Addaboubou @VirusesImmunity @fitterhappierAJ Yes even before this was published I had got my cortisol tested ( low) and my CD3/4/8 count done ( immunosuppressed). I knew something wasn’t right. But obviously I have had no help with the results.
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My GP refusing to prescribe my #fluvoxamine for my post covid cognitive dysfunction which has cost me both my job and my quality of life. Any ideas please.
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@ahandvanish At 21 months this is entirely the story for me. Chronic fatigue, almost zero exercise tolerance, post exertional malaise with cognitive dysfunction which has not improved ( took part in study which demonstrated this).
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@laurens808 That’s so interesting! Have numbness in hands and feet since Covid. Just been tested for SFN as have developed post covid POTS. No idea this was a sign of it.
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My instagram page “LongCovidDoc” which some of you may follow was hacked by someone trying to get people to invest crypto coin. They are now reposting my old posts to make it look “more authentic” please ignore everything from 3 days ago. I am trying to get it back.
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Anyone ( doctor) want to chat to Metro this week about the need for our Long Covid Clinics to start offering treatments such as #microclots #teammicroclots TIA @doctorasadkhan @jakesuett.
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Gaslighting at its worst.
@resiapretorius @dbkell With #LongCovid, my body is covered in bruises. Went to see a doctor, triumphing - for sure bruises couldn't be psychosomatic!? His 1st question was about self-harming behaviour. His 2nd whether I was into rough stuff in bed. Zero interest in clotting, zero investigation. .
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I am just in the process of summarising this paper for my #LongCovid blog. SARS-CoV-2 found in nearly EVERY cell of the body in those who died with Long Covid. One to send to my gaslighting respiratory consultant.
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“We’re being clapped all the way to the benefit office” ( I certainly have been)
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@msmousse1 @ChirpyT8 I would still do it. You are probably not immunosuppressed and a mask hugely reduces your chance of getting Covid.
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Prof Louise Cummins initial research has found that #pwLC score poorly on 1. Immediate and delayed recall 2. Verbal fluency- letter and category 3. Discourse production- describing pictures, telling stories. 🧵.
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@KateCushing2 Yes I have already retrained and it is not easy and at that point I had funds to pay for defence and exam fees. People are saying it’s probably discrimination to take us off the list due to ill health but all I have seen in the last 2 years is discrimination.
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@doctorasadkhan I have acute Covid again (6th time on top of Long Covid) and am in so much pain am unable to sleep. It’s putting me close I can tell you. Not only how I am feeling now but how much my body and brain will be set back again.
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My thoughts right now #longcovid #MECFS #autoimmune #cancer #immunosuppressed #young #elders #fragile #pregnant
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I am sorry but you have to include Whitty in this. Every day he downplayed it as a mild 2 week flu like illness. For the first 12 months he never once mentioned #LongCovid.
#covidiots like Heneghan, Baker, Balloux, Hartley-Brewer, Oakshott, Young, Spectator, Neil, Pearson, Pymm, Triggle, Allsopp, Melville, BBC, Telegraph to name just a few. Even when you show them they were wrong to play it down they'll still never apologise & insist they were right.
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The NHS was on its knees last wave with a lack of adult ITU beds. Take it from me as a former paediatrician there are A LOT fewer paediatric ITU beds in 🏴.
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@loscharlos @elisaperego78 @LongCovidSOS @long_covid @LongCovidKids @SessionsTlc @patientled @itsbodypolitic @amymitchellart @LongCOVIDPhysio @MECFSNews @research_long I recently tweeted my results
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No matter how hard you try you WILL NOT psychologise my disabilities as a result of an acute Covid-19 infection. I will push back even harder with scans, blood test results and research. You can try to push me down but you CANNOT and WILL NOT overcome the MILLIONS of us affected.
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Another day another #medicalgaslighting. Please see the third sentence “the rehabilitation medicine service is not seeing any increase in referrals in relation to long term neurological problems in relation to Covid”. Do better Queen Alexandra Hospital Portsmouth #nhse
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PCR positive finally today after 5 days of positive lateral flow tests and 2 negative PCRs. Current government advice was that after my first negative PCR test I “didn’t” have Covid so could go on my merry way back into my community.
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@Kelsveil Thank you for your advice! I have microvascular angina diagnosed post acute covid 1.0 and it feels like a flare up of that but follow up cardiologist appointments are a year away. Crazy how we have to rely on other long haulers for management advice 🤯.
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Just so you know there are a lot of medical professionals WITH #LongCovid who don’t believe/ understand #microclots. We will have our work cut out as patients if they don’t get on board.
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@SnoopDougieDoig @ahandvanish My GP is useless and wouldn’t run anything. If you are constantly getting infections you could ask for an immunity profile and I would take in latest research on immunodysregulation in long Covid and see where you get with that 🤞🏻.
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Totally agree with this. So far in 2 years I have managed to get a tilt test for dysautonomia nothing else.
Test all #LongCovid patients for cerebral hypoperfusion, endothelial function, dysautonomia, brain hypometabolism, NK cell activity, T-cell function, cytokines, GPCR & anti-ACE2 AABs, microclots, SFN, SvO2 level & CSF abnormalities, & then try & say 'all the tests are normal'. .
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That fact that in our 40’s we suddenly have to have lists of what to take to physically leave the house should be worrying our doctors surely? Apparently not #acquiredbraininjury #TreatLongCovid.
I have likely permanent #LongCovid brain damage, after a "mild" #Covid19 infection. Can't work, can't read, and I feel like I have Alzheimer's and early onset dementia. But hey. I'll just set a reminder on my phone to bulk buy post-its. 🤦.
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@fearnley_k @resiapretorius @microbeminded2 @dbkell @MBVanElzakker I agree - I felt I never got better from the acute infection. There has not been one day when I was “back to my normal”.
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Currently doing an “add yours” on my insta stories to highlight that Long Covid is neither long flu or a long cold but a disease that affects nearly every part of my body by dysautonomia small fibre neuropathy hypothyroidism mast cell activation syndrome chronic migraine…
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For anyone that’s interested I was diagnosed (after a 3 year battle to be taken seriously) with autonomic and small fibre neuropathy as a result of an acute Covid-19 infection in March 2020. My neurologist said this was likely to be autoimmune driven and has ordered more testing.
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@LC_UK_Action The closer I get to my 2 year anniversary the harder it is. I feel if I just had one medical professional that actually gave a shit that my body and brain has not improved that would be a start.
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@PlanetEarth_HD I find it disgusting. My #longcovid clinic is only keeping me on the books because I pre Covid worked for the NHS. What happens when the NHS actually pulls their finger and starts offering treatments? Are they going to contact us all? Are they fuck.
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@JD202212 I am not on twitter much as it’s a cesspit of hate! But you can find me on instagram as - longcoviddoc.
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Quick review of new #LongCovid paper out by Boston collaborative team. Summary - Long Covid following mild acute Covid-19 infection is associated with multisystem involvement including - 100% with reduced cerebral blood flow 🧵
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@EternityOlive @ToshiAkima I actually have coxsackie reactivation as a result of Covid infections. I had recurrent symptoms after my first infection every 4 weeks which I think was reactivation of Covid/ EBV But I just can’t tally up such a strong viraemic load in my nose and throat with viral persistence.
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At one point I was gaslighting myself as all the FB groups were saying “I got better after the vaccine” - after my AZ I couldn’t remember the name of the practice I worked at or any names of my colleagues - at the time before I was “let go”.
Study finds no strong evidence to suggest vaccination improves symptoms of post-acute COVID-19 syndrome
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@Drbeth_ @Hurricanestrach Thank you @Drbeth_ . I would be interested to hear what you think. Also despite my frequent infections I am denied antivirals each time I am infected as I “don’t fit the criteria” - just for interest.
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@cathburns How about GP’s such as myself who weren’t protected by this and were all sacked over a year ago?? Myself September 2021 after catching Covid pre PPE and pre lockdown.
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Good thread. Post Covid Dysautonomia is often misdiagnosed as anxiety.
Another study seems to suggest that people with #LongCovid suffer from PTSD, anxiety, and depression. Let me walk you through why we need to be very careful when interpreting the results of this or similar studies. 1/🧵.
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This is absolutely #LongCovid.
In the middle of the night, when your heart goes into a spasm for 20 minutes. Stabbing pains. You take an aspirin and 🤞and don't consider going to the ER. Long Covid. No treatment. No belief. Millions of people have imagined it. Not complaining, just observing. In disbelief.
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@hout_marianne Thanks @hout_marianne I have all of those features but I strongly suspect after 2.5 years I have MECFS.
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Ok people (even other long haulers) need to start realising that we are not homogenic. My acute infection is not the same as someone else’s nor is what happened to my body the 2 years following. We need to pay attention to the details.
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@cfs_jo @KunstJonas @arisonsned Yes post covid dysautonomia forms a large part of the “anxiety” component. When your heart is beating at 180 bpm just to get oxygen to your brain you will of course release adrenaline etc in order to do this and it’s affects on the brain? Flight or fight - anxiety.
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@ToshiAkima @gemcarey Repeat infections have made me immunosuppressed but apparently as I have #LongCovid I do not qualify in the UK for Paxlovid or help regarding this.
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@TristanVeness I see your lymphocyte count is dropping as well like mine. Have you been given any insight as to why?.
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@jeffgilchrist Can you comment please. 5 infections with Covid-19 so far. Long Covid POTS MCAS peripheral neuropathy small fibre neuropathy chronic fatigue cognitive impairment. First infection native March 2020
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Unfortunately Long Covid Clinics in the U.K. are dismissing her research as “some doctor just trying to promote themselves” 😩.
So much respect for this amazing scientist. @resiapretorius discovered microclots in #LongCovid patients’ blood and, in doing so, threw a huge bucket of cold water over those trying to psychologize the illness. Hopefully her pioneering work will lead to accessible treatments.
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@eglem1 Covid 5 times over past 2.5 years. 2 x AZ vaccinations. These results are several months after my last infection. No results prior as only people with cancer/HIV etc have their T cells checked.
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@NateB_Panic Her doctors to be frank sound shit. The BMJ has done several articles geared at GPs on how to investigate and manage ( to some extent) some of the more severe symptoms of Long Covid. It doesn’t even sound that someone has even screened for POTS?.
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We are long haulers or long covid sufferers. I have only a few times been treated as a patient with #LongCovid.
I cringe when I hear people with #LongCovid being referred to as patients. Patients receive treatment.
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Any #cardiologists in the U.K. do ENDO PAT testing for #endothelialdysfunction or is that ANOTHER test that could be beneficial in #LongCovid only available overseas.
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@capsulequeen @gemma_jelly Thanks. Sorry I know what the results mean I was hoping an immunologist might say why or how to improve counts. Oh and to raise awareness.
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It was a small but very in depth study and she compared results with those without an acute Covid infection and those with ME. She found that the deficits were NOT fatigue related as neurologists will have us believe.
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@TweetTipsforME Yes there are. Many are struggling with disabilities like me. Most are not getting any support and are trying to navigate the system whilst being sick. No one is trying help to get us back to work.
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@origincanada @SteveOweathaguy Had 2 doses of AZ. Profound worsening of symptoms especially cognitive after both for 6 weeks so no boosters.
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I took part in this study and have been followed up at 6 months with marginal improvement.
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They told me “they couldn’t manage me in my current capacity” ie disabled @TheBMA said due to @NHSEngland contract they could dismiss me.
A system broken before COVID .treated staff who became ill through a toxic airborne agent without appropriate PPE,paid in claps & attempts to give the P45 forms since they are not ‘resilient enough’. that is one crazy insane system. @sajidjavid @TheBMA @HCSANews @NHSEmployers.
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@EternityOlive @ToshiAkima I have been self medicating for viral persistence with Tollovid ( best I can do with no @NHSEngland support ) but these reinfections are so strong- fever, body aches, pains, headaches, chronic cough, sympathetic NS in overdrive I have my doubts they are reactivation.
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I have no words 😶.
So someone I know with a double lung transplant died today from Covid. She’d been forced back into work once furlough had ended. But it’s all ok because @sajidjavid told CEV people in October that the official shielding programme was over #cev #wecount #covid.
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@D_Bone My cognitive dysfunction worsened for 6 weeks after each vaccination- I already have Long Covid. At one point it was so bad I couldn’t remember where I worked or who I worked with before I got sick. No one has talked to me about this. I decided to not have a booster.
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Absolutely this.
A word of caution on “How I Recovered from #LongCovid” posts, which are now abundant on the internet. We know from #pwME that a % of folks will spontaneously recover within the 1st year. Those people are likely to attribute their recovery to whatever they were trying at the time.
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Possible cause for microvascular angina and other heart issues post acute covid?
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