Discover and read the best of Twitter Threads about #TeamClots

Most recents (24)

Get ready for #TeamPfizer to come your way to pay you to pretend flush niacin, key aminos, B vits didn’t cure you but actually poisoned you.. + to start pushing Paxlovid & everything else harmful under the ☀️, to best limit word getting around about flush niacin, key aminos, Bs…
Read 6 tweets
“Cells & tissues that control blood flow are damaged & the blood’s tendency to clot is amplified. #MicroClots, leftover from the viral assault or fueled by its aftermath, might be gumming up the body’s circulation, to disastrous effect” #LongCovid…
“In some patients we have specific areas where no blood flow comes in” or the flow is reduced, Buonsenso says. Is that driving their lingering symptoms? “I can’t say this is the truth, of course. But this makes sense.” #LongCovid
“Where there should have been bright oranges and yellows, signifying pulsing blood, one lung was nearly completely blue, indicating little flow. Buonsenso believes #MicroClots or chronic damage to the lining of blood vessels may be impairing blood flow.” #LongCovid
Read 18 tweets
We did the right thing. We followed the science and did what doctors told us. Now the science is abandoning us and doctors are gaslighting us.
#CanWeTalkAboutIt greyscale picture of me, lo...
You all know what we're talking about. Im not going to write it in this thread. The silence is deafening & the abuse is deadly

Im participating in this to support my (new) family; we’re all suffering. If you saw my DMs you would be horrified at what some have & are going through
Many have suffered unspeakable things. Things you couldn't make up if you were writing a horror movie. This is of course not new. But there is an added layer of denial regarding the cause. I've been very lucky in my journey - no denial. This is not the case for most others
Read 18 tweets
my current (unoriginal) take on #microclots, influenced by lots of folk including chats with #TeamClots.

1. we need to understand the full pathway of events: what come first (upstream), what are the consequences (downstream)

2. we need to understand the best target
2a. if the upstream trigger is transient, like acute inflammation ± (quickly degraded) spike protein, then targeting the downstream effects (microclots) is the right pathway
2b. if the upstream trigger is chronic, like reactivated/persistent viruses, autoimmunity, chronic mast cell activation, or lingering spike protein, then treating the downstream effects (microclots) may not result in long-term resolution
Read 11 tweets
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
2/ the cardiologists say ‘we don’t see much myocarditis in #LongCovid and when we do it’s mild’. The GPs say ‘ we see lots of odd chest pain after Covid but we don’t really know what it is’.
3/ the media say ‘Covid is mild, long Covid is a mystery and we don’t know what causes it or how to treat it’.
Read 11 tweets
1) How I cured my #LongCovid in 3mos after suffering for almost a year. This was my last hope. I researched what #Covid does to the body, came up with a list of "clinically studied" supplements and...
2) took them all. Firstly, I am not a MD. In March 2021 I caught Covid while working as a #frontline #healthcare worker. My symptoms of #brainfog, #fatigue, #jointpain, #muscleweakness, morning #stiffness happened after my recovery. At the time, this #postcovid #syndrome was...
3) was just starting to be discussed online. The the term #Longhauler was coined. Those in the #ME, #CFS, #Lyme #MCAS #community starting speaking out about the similarity of #symptoms with #LC. #Covidclinics started to sprout up, include one at the....
Read 48 tweets
🧵 ⭐️ Response to the NIH ‘long Covid’ study⭐️ I hate to break it to LC minimisers but it’s not the most detailed, controlled, comprehensive investigation into LC. It would be akin to doing a lung cancer study with no chest X-ray and saying the symptoms were due to anxiety. 1/
2/ They used a very small group of ‘post Covid’ patients. This is not the same as long Covid. There were 189 patients, 55% of whom had no symptoms after Covid. That doesn’t leave many to study.
3/ they had an over reliance on Covid antibodies as proof of infection or not. We know not everyone makes antibodies. In this study below 36% of patients didn’t. This matters as the control group needs to be just that- a control group.…
Read 23 tweets
Stop doing standard tests on #LongCovid patients and claim that they are physically alright because the results are normal. Medicine & Science have not bothered to develop proper biomarkers for post viral illnesses for decades, ignoring the pleas from patients, including #pwme.1/
The world has not seen a pandemic on the scale of what #COVID19 caused (last was the Spanish flu) and by definition, you have not seen mass disability on the scale of what #LongCovid has been causing. Use your brains and empathy - if you have either of them - & think! 2/
Why would millions of people sit at home, losing their appetites, mobility, health, livelihood (and lives, sadly, in some cases) after contracting Covid without an actual biological/physical cause? They cannot all be depressed, surely? 3/
Read 9 tweets
UK patient travels to Germany, starts treatment for #LongCovid. Attends local LC clinic- they note pt is improving on the treatment but refuse to prescribe it because ‘we don’t agree’. No reason given. Arrogance, hubris & medical orthodoxy at its best #TreatLongCovid #TeamClots
@uclh this is you. Not good enough.
Sharing with the express permission of the patient.
It’s 2022 and we are 2.6 years into this nightmare.
Read 4 tweets
"Your test results are normal"

Medical professionals, please ask yourself: at which point would you stop testing?

I have put a ⛔ where I am aware many doctors have stopped with patients.


#LongCovid #MECFS #vaccineinjuries #chronicillness #TeamClots #MedTwitter
A patient goes to the dr with a range of systemic symptoms that dont neatly fit current diagnostic criteria. Symptoms started rapidly & strongly a few hours after the COVID vaccine; however, the reason for the problem isnt important for this lesson

The doctor does some tests
Hb, RBC, haematocrit, MCV, MCH, platelet count, WBC, neutrophil, eosinophil, basophil, lymphocyte, & monocyte count. Mean platelet volume is elevated but this isnt reported & is instead hidden in the lab records. “Your test results are normal” the doctor says

Read 18 tweets
Tomorrow is my 14 month #CovidVaccine anniversary.

Today is hopefully the beginning of the end of that nightmare. 😬😅🤞🏻

#vaccineinjuries #LongCovid #TeamClots A box of clopidogrel 75 mg tablets and a box of abixaban 5 m
Massive thank you to the vaccine injured community, esp @ukcvfamily but also many others (special thanks to @Fallaryn), who have introduced us all to research and brought untold levels of support
Massive thank you to all the #microclots researchers and clinicians who have brought us valuable insight and quite literally life saving advice. The idea to get a VQ scan was a game changer and i cant thank the person who suggested that enough
Read 5 tweets
🧵 on repeat infections, negative lateral flow & #PCR tests, and the use of #COVID19 antibody tests. An n=1 experience #OmicronVariant #LongCovid #MedTwitter #TeamGP #psychtwitter #LongCovidKids #COVIDisAirborne #CovidIsNotOver 1/n
I had acute #COViD19 in Nov 2020, PCR +ve. Developed #LongCovid a month after. Had one dose #Pfizer Feb ‘21 which gave me new symptoms. Out of interest I had my anti-spike antibodies done May ‘21- they were above the upper limit the assay could measure 2/n
With the passage of time my antibodies dwindled. I had them rechecked in Dec 2021- both nucleocapsid & spike antibodies were below the protective limit. Therefore I had no protective antibodies. 3/n
Read 18 tweets
It has been an honour to walk alongside my friend & colleague of 21 years @BinitaKane & her daughter Jasmin on their courageous & inspiring journey. #LongCovid in adults children is real & serious. There are treatments available- sadly only for a fortunate few #TeamClots 1/n
(Everything I say is with the express permission of @BinitaKane). Jasmin is not the only child with #LongCovid who has been shown to have microclots & hyperactivated platelets. They are a consistent finding in kids & adults who have travelled for treatment to Germany & SA 2/n
Globally 100m are affected by this vile illness. In the U.K. alone this figure is estimated to be 1.8m, with 2/3rds reporting an adverse impact on their daily activities. 1% of primary & 2.7% of secondary school children fulfilled the criteria for #LongCovidKids 3/n
Read 17 tweets
Ok. As promised, here is a super-🧵 on cognition and #LongCovid. This will be a combination of published material and things that we have observed in-clinic. This is not intended to be definitive nor epidemiological and so it is highly likely that your personal experience (1/n)
may deviate significantly. This is about my reading and experience of cognition and #LongCovid but from what I have seen shared in the comments of my tweet yesterday, it seems that much of this may apply to other infection-associated chronic illnesses (h/t @microbeminded2) (2/n)
such as #MECFS, #Lyme and #dysautonomia/#POTS to name a few. Let’s start out with naming. I try not to use the term “brain fog” because I don’t think it conveys the seriousness. People with LC are experiencing cognitive dysfunction that often results in cognitive impairment (3/n)
Read 25 tweets
🚨Important Announcement!

#TeamClots has just launched an initiative to scale their #MicroClots testing across the globe.

I have a few thoughts on why I think this is one of (if not the) most important next steps for helping #LongCovid patients 1/…
We're in dire need of a biomarker & diagnostic, and #MicroClots is the most promising to date. So far it has a 100% detection rate in patients & yet to be disproven. Even if it falls short of 100%, it's now clear it's going to be a critical test for all #LongCovid patients. 2/
This initiative will allow @resiapretorius and her team to develop a methodology to replicate the #MicroClots test in any lab in the world. The implications of this **cannot be overstated** 3/
Read 19 tweets
#2 B-COMPLEX/MULTI VITAMIN. Buy a liposomal or other form that increases bio-availability. Take 1 capsule w/Breakfast and Lunch. If you have stomach upset, try sublingual (under tongue) EZ Melt B-Complex in AM & Multi w/iron for Dinner.…
#3 OMEGA 3s. Fish Oil, Krill Oil, Algae Oil are all good sources of Omega 3. Be careful the EPA/DHA ratio. EPA helps with inflammation/DHA helps with cognition. You need both! Opt for a 1:1 or 2:1 ratio of DHA to EPA (2:1 ratio eg. 800 DHA/400EPA)…
Read 93 tweets
Spent more time in the garden today. Insect populations are booming! A bit of sunshine really helps to lift the spirits.
#Hoverfly Image
Had a run of 3 good days, but just tried doing *some* of the things my lungs had allowed me to do over the weekend & over-did it by fixing the ball-cock in the toilet cistern! Lowered my guard; lungs are tight again (first time in 10 days) & I'm lightheaded. #PulmonaryEmbolism
Read 78 tweets
Since so many people asked for details about treatment in my last #LongCovid thread, I thought I'd do a detailed thread on it. I'll start by saying that this was with guidance from my doctors. I know medical care is inaccessible to many but please be cautious.
Things that have helped me the most:
- d-ribose was the first thing that allowed me to get out of bed for more than a few minutes. I credit this with turning the corner from bed bound to "just" home bound.
- CoQ10 gave me some more energy and clarity.
- NADH is the third supplement that has made a real difference in my energy levels.
- B1 and B12 plus a multivitamin
- D+K vitamins
- Floradix for anemia
Read 12 tweets
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
Read 6 tweets
“Its the 1st study to demonstrate lung abnormalities in #LongCovid patients who are breathless & other investigations are unremarkable. It suggest the virus is causing some persistent abnormality in the microstructure of the lungs or pulmonary vasculature”…
It’s two years & still deal with chronic debilitating breathlessness from #LongCovid. It seems all of the “normal tests” don’t really help with this disease 🤷‍♂️ - It’s time to have a very serious conversation about how to expedite diagnostics at “operation warp speed”.
Read 6 tweets
Question for #NEISvoid #SpoonieChat #MedTwitter #TeamClots

Does anyone know what might cause *intermittently* fragile & hard-to-access veins other than differences in medications?
Sometimes I get blood drawn with zero issues, but at other times…

#TW blood, bruising, IVs next:
Photos #1 & 4 are from blood draw attempts. Photo #2 is the only successful IV my entire first week in the hospital. Photo #3 is from a blood pressure cuff seemingly rupturing a blood vessel in my arm.

All of these happened at times my INR & PTT were clotting on the quick side. Photo of a freshly blown hand vein from a blood draw. Some bPhoto of a (functional!) forearm IV that looks like it is stClose-up photo of an upper arm with a “band-shaped” bruiPhoto of an arm with a number of deep purple bruises on it f
This kind of reaction & being an “impossible stick” happens almost every time I’m sick enough to go to the ER, but only rarely when I get blood tests at home/in the community. In fact at home I’ve been a relatively easy stick.

Correlates w/autoimmune flares & reticular patterns.
Read 9 tweets
‘Just because we have not yet identified a biomarker…. does not mean biomarkers do not exist. We just need to look harder.’ Brilliant article by @resiapretorius on her landmark discovery #LongCovid #MECFS #TeamClots #MedEd #MedTwitter #pwME #COVID19 1/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
Read 4 tweets
Since many are interested in testing for #microclots, I will try to describe the process in this thread. I am not a medical professional and I have extremely limited medical knowledge. So whatever I write in this thread is not like a Bible for microclot testing. Adding #Teamclots
Finding the right lab facility

Finding one such lab is as easy as finding a mosquito in your house(don't blame me if your house doesnt have mosquitos). Any lab that offer tests like fibrinogen, d-dimer, Prothrombin time, APTT etc can get this microclot test done.
If you dont have any of the below ingredients(sorry to make it sound like a food recipe), keep trying till you find a lab with one. Sodium citrate blue top tube, centrifuge and light microscope(sufficient).
Read 12 tweets
I was able to follow the procedure from Professor @resiapretorius paper to test for #Microclots and this is what I found. #Teamclots could you confirm if this the bio marker? I will add a video of it in this thread.
Microscope I used didn't have camera capability to capture so I used my phone to capture it.
The lab folks had a very hard time drawing blood from from me. Finally with much effort they were able to extract the much needed 4ml.
Read 6 tweets

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