A number of you have asked me how I did with #Paxlovid which I took for recent re-infection. Prior to re-infection, I was doing well on triple anticoags along with platelet/endothelial stabilisers (sertraline, rupatadine, rosuvastatin & a course of colchicine). 1/n
I was noticing an improvement in mobility, orthostatic symptoms & recovery time after #PESE. My re-infection was a clinical diagnosis based on symptoms & microscopy which showed multiple new microclots; I was negative on PCR & LFT, as many seem to be with the new strains 2/n
My physician prescribed a course of Paxlovid. Unfortunately I suffered severe orthostatic symptoms, fatigue, nausea & metallic taste. I managed to complete the course, & within 24 hrs side-effects disappeared & I was back to the previous baseline 3/n
My Dr remained concerned about residual infection, & I had another course. The response was identical to the first course. It's been a week since I finished, & I'm back to my usual drug regime and pre-reinfection baseline. 4/n
The reports of people benefiting are encouraging, & there is no doubt we need a trial of this drug in #LongCovid using an extended duration. Even an n=50 study would be informative. This needs to happen ASAP. 5/n
For me, unanswered questions are- could the almost immediate benefit some are noticing be due to the anti-inflammatory effect of antiretrovirals, rather than antiviral effect? Also clearly, in pure vax longhaul there will be a different mechanism. 6/n
Please also note this is a highly toxic drug with multiple interactions with many drugs longhaulers may already be on, & should only be taken under expert supervision. DO NOT SELF-MEDICATE. Also the above is just my experience, & is not necessarily generalisable.
Interested to hear from anyone who has had a lasting improvement from baseline.
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I’ve just been made aware of a #POTS management clinic run out of @uclh autonomic service. Brace yourself. I’ve had feedback from an attendee and it isn’t good. @UKPoTS you may be aware of this @YorkCardiology@dysclinic it’s awful 1/n
Run by 2 specialist nurses. Some jewels:
“We learn to think in particular ways
These ways may not always be helpful when you have ongoing health issues. Unhelpful thinking can increase symptoms. 2/n
These thoughts are automatic, you may not even be aware of them, until we train ourselves to think differently”
Hypervigilance, particularly of body sensations is a common thinking pattern in PoTS”
The website neurosymptoms.org was recommended for dissociative symptoms 3/n
A few mths before getting #LongCovid in Nov 20 I was a frontline NHS respiratory consultant; 6am gym goer; couldn’t sit still, always travelling the world with my wife & 2 gorgeous children. Sep 21- bedbound, gastroparesis, complete sound & light intolerance, bladder incontinence
post-viral urticaria that made me suicidal, pericarditis, angina, cognitive impairment, crippling #POTS resistant to all medication, renal impairment, impaired glucose tolerance, intolerant of most foods. Was waiting for life to end. Got v little help from @NHSEngland 2/n
Have spent over £35,000 on supplements, private specialists & experimental treatment in Germany. I am better but still housebound, 50% bedbound, with work or family life a distant dream. Yet I am one of the lucky ones- had the resources to give myself a fighting chance 3/n
This harmful advice is doing the rounds. The obsession to get back to activity is dangerous. In #Covid19 rest & pacing are key for recovery & to avoid #LongCovid. There is zero scientific basis for the recommendations here
@eis2win@SINIcouk@sportwales@sportscotland every patient is different. Some recover quickly, others can take months. Your advice is medically harmful & can result in deterioration & disability.
Both acute & #LongCovid are a thrombotic vasculopathy that can affect any part of the body. #COVID19 is NOT a ‘viral pneumonia’. Dr Jaco Laubscher told us this 2 years ago. Had the world listened, hundreds of thousands of lives could have been saved. 1/n
Had we treated acute COVID properly with bedside TEG & appropriate anticoagulation, so much #LongCovid could have been avoided. I remember being ridiculed by colleagues for sending people with high d-diners home on anticoagulation in the presence of normal CTPA 2/n
With appropriate attention to hypercoagulability in the early stage, ICU admission & death can be prevented. So many lives have been lost due to medical orthodoxy & arrogance & therapeutic paralysis whilst awaiting multicentre RCTs 3/n
Really proud to be collaborating with Resia; we will be publishing the work we did with Dr Beate Jaeger & @KraterMartin before too long. Meanwhile #LongCovid clinics need to stop telling patients ‘we don’t know anything about #LongCovid’. We do. The slides don’t lie 2/n
#LongCovid is a public health emergency; it is a mass disabling event. Laboratories round the world need to start examining the blood of longhaulers ASAP- the protocols are simple & published for all to access 3/n