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  • Discussion - Long COVID


    Neeja Bakshi
    @NeejaB
    A very long - Long COVID thread. Our Long COVID program has been open 10 months now. I've seen over 150 patients in that time, with new referrals booking well into February 2023.
    10:56 PM · Oct 27, 2022·Twitter for Android
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    Neeja Bakshi
    @NeejaB
    ·
    13h
    Replying to
    @NeejaB
    I've had to stop accepting other internal medicine referrals, just so I can keep up with the demand, the follow ups, the downstream effect.
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    Neeja Bakshi
    @NeejaB
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    13h
    What I've learned... There are definite patterns. Dysautonomia/POTS. Cognitive dysfunction and brain fog. PEM (post exertional malaise). Unexplained rashes. Muscles feeling like cement. Migraines. Chest pain. So much chest pain. Shortness of breath.
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    Neeja Bakshi
    @NeejaB
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    13h
    Who I've seen.... Humans of all ages. 21 through 87. All demographics. Previously healthy. Previously not healthy. Teachers and healthcare workers. So many teachers and healthcare workers. Athletes. Non athletes. It's non-discrimnatory.
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    Neeja Bakshi
    @NeejaB
    ·
    13h
    How my clinical process has evolved.... Pre-appt screening tests, quality of life scores, functional assessment scores. During appointment visual aids to help understand possible pathophysiology.
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    Neeja Bakshi
    @NeejaB
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    13h
    Comprehensive educational documentation with personalized recommendations for each patient as info is often overwhelming, esp with brain fog. Treatment aimed at both "Band-Aid toolbox" to help quality of life and "Root cause" looking at immunomodulation, anti-inflammation.
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    Neeja Bakshi
    @NeejaB
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    13h
    Nursing and physician check ins. Regularly. Reflective listening, validation, and commiseration. Continuously reading, searching, hoping to find next breakthrough or tool that can be used.
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    Neeja Bakshi
    @NeejaB
    ·
    13h
    Barriers I've discovered - insurance. Insurance. Insurance. Insurance. Pages and pages of forms, minimizing my judgement, experience and clinical knowledge.
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    Neeja Bakshi
    @NeejaB
    ·
    13h


    Neeja Bakshi
    @NeejaB
    ·
    13h
    Fighting tooth and nail to have claim adjusters understand that "pushing through" and excessive functional assessments for the patient is contraindicated in patients with long COVID and ME/CFS.
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    Neeja Bakshi
    @NeejaB
    ·
    13h
    And through all of this, trying to manage my own long COVID experience. Which has required pacing, reinvention of my chart note template to help cue the next question I was supposed to ask.
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    Neeja Bakshi
    @NeejaB
    ·
    13h
    I let my patients know at the beginning of their long covid assessment, that the 90 minutes allotted is not only for them, but for me... As I will undoubtedly require the time and space to fully stay on task.
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    Neeja Bakshi
    @NeejaB
    ·
    12h
    The 15 minute buffers I have to place throughout my day to regain the line of questioning and follow through needed that comes with each individual's Long COVID story.
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    Neeja Bakshi
    @NeejaB
    ·
    12h
    10 months in, some of my patients have been able to be discharged, feeling almost close to pre -COVID health. Some have gotten COVID again, which worsens their symptoms and we start everything from scratch.
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    Neeja Bakshi
    @NeejaB
    ·
    13h
    But the vast majority of Long COVID patients are in this purgatory. Not knowing which way their life is going to go. Is this the best it's going to be? Am I one illness away from going back to where I started? Will I be able to work again? Will I feel normal again?
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    Neeja Bakshi
    @NeejaB
    ·
    13h
    After 2.5 years, we have only begun to scratch the surface of Long COVID, and understand its impact on individuals. I fear we will continue to underestimate its impact on our province, our nation and truly the world. #LongCovid
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    Neeja Bakshi
    @NeejaB
    ·
    3h
    Edited: thank you for the shares and the comments. Couple of common questions came up, I'll try to address, with the disclaimer that this is not medical advice, & while experiential medicine is important, I am very clear with my patients about risk vs benefit in any intervention.
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    Neeja Bakshi
    @NeejaB
    ·
    3h
    1. What treatments am I recommending? If dysautonomia/POTS- common known tx: fluids, electrolytes, beta blockers, ivabradine (the latter often comes with cost / coverage barrier). Fatigue/inflammatory symptoms: antihistamines (Blexten, rupall); LDN (low dose naltrexone)
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    Neeja Bakshi
    @NeejaB
    ·
    3h
    Other treatments usually based on symptoms - vitamin deficiency replacement, mood support (ADHD, depression), inhalers, anti-inflammatories, and much much more. Non pharmacological - rehabilitation (with the right team that understands CFS), acupuncture, counseling / CBT.
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    Neeja Bakshi
    @NeejaB
    ·
    3h
    2. Vax vs unvaxxed - remember, this is a small sample size. Purely anecdotal. Those that got COVID in 2020 prior to vaccine being available (in my cohort) show far more debilitating and severe long COVID than those with even one dose. Vaccinated individuals can still get LC.
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    Neeja Bakshi
    @NeejaB
    ·
    3h
    Unvaxxed appears to have worse symptomatology (again. Only in what I am seeing, this is not the same as a robust study that will be needed in general for LC).
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    Neeja Bakshi
    @NeejaB
    ·
    3h
    3. This sounds like many other autoimmune, post-infectious syndromes that many suffer from: I agree. I am hopeful that that attention being given to LC, the subsequent research and treatment guidelines - will help a far larger population of patients who have been ill for so long.

  • #2
    Unintentionally, I'm sure, but she sounds like another vaccine commercial.

    "Who I've seen.... Humans of all ages. 21 through 87. All demographics. Previously healthy. Previously not healthy. Teachers and healthcare workers. So many teachers and healthcare workers. Athletes. Non athletes. It's non-discrimnatory."
    Everyone should be afraid? I read there are risk factors for the diagnosis: female, overweight, pre-existing anxiety. The anxiety is a big one so when media/researchers/government increase anxiety to promote vaccines, they are creating more 'long Covid.'

    2. Vax vs unvaxxed - remember, this is a small sample size. Purely anecdotal. Those that got COVID in 2020 prior to vaccine being available (in my cohort) show far more debilitating and severe long COVID than those with even one dose. Vaccinated individuals can still get LC.
    2020 was back when original strains were circulating. Even including that time period leaves the evidence 'weak' as far as protection.

    https://www.sciencedirect.com/scienc...89537022003546
    _____________________________________________

    Ask Congress to Investigate COVID Origins and Government Response to Pandemic H.R. 834

    i love myself. the quietest. simplest. most powerful. revolution ever. ---- nayyirah waheed
    Governments don't have or own souls.

    (My posts are not intended as advice or professional assessments of any kind.)
    Never forget Excalibur.

    Comment


    • sharon sanders
      sharon sanders commented
      Editing a comment
      She did not say that everyone should be "afraid". That is your word.

    • Emily
      Emily commented
      Editing a comment
      It was my question.

  • #3
    https://www.nichd.nih.gov/newsroom/n...gical-distress
    Science Update: Pre-existing distress may increase risk for long COVID, NIH-funded study suggests


    Friday, September 23, 2022

    Psychological distress before COVID-19 infection—feeling stressed, depressed, anxious, worried, or lonely—may raise the risk for long COVID, suggests a study funded by the National Institutes of Health. Long COVID includes such symptoms as fatigue, brain fog, breathing difficulties, and other symptoms that may persist for months after a COVID-19 infection.
    The researchers cautioned that their findings should not be misinterpreted to support the view that long COVID symptoms are psychosomatic. Among study participants who developed long COVID, almost half had no psychological distress before COVID-19 infection. Many symptoms of long COVID, such as breathing difficulties and loss of taste and smell, are not common symptoms of mental illness. The authors called for more research to determine if alleviating psychological distress before COVID-19 infection reduces the chances or severity of long COVID.
    The study was conducted by Siwen Wang, M.D., of the Harvard T.H. Chan School of Medicine, and colleagues. It appears in JAMA Psychiatry. The study was funded by NIH’s Eunice Kennedy Shriver National Institute of Child Health and Human Development; National Heart, Lung, and Blood Institute; National Institute of Environmental Health Sciences; and National Cancer Institute.
    Background

    Long COVID involves a wide range of symptoms that last more than four weeks and sometimes for many months after a COVID-19 infection. Symptoms, such as fatigue, breathing difficulty, shortness of breath, brain fog (difficulty thinking or concentrating), and loss of taste and smell, may also go away and come back again. Risk factors for long COVID include older age, obesity, severe COVID-19 infection, high blood pressure, depressed immune system, and asthma.
    The researchers analyzed data from three long-term studies, two of which enrolled nurses and a another which enrolled children of nurses. From April 2020 to September 2020, participants, almost 97% female, responded to a baseline questionnaire on whether they were experiencing psychological distress, such as depression, anxiety, worry about COVID-19, stress, and loneliness. After the baseline questionnaire, nearly 55,000 participants responded to monthly questionnaires until November 2021 on their overall health.
    Results

    During the 19 months after the baseline questionnaire, 6% (3,193 participants) tested positive for COVID-19, with 1,403 long COVID cases.
    Long COVID was 32% more likely among those who had symptoms of depression, 42% more likely among those with symptoms of anxiety, 37% more likely among those who were worried about COVID-19, 46% more likely among those who felt stressed, and 32% more likely among those who felt lonely. Participants who reported two or more types of distress were almost 50% more likely to develop long COVID.
    Significance

    The authors concluded that psychological distress before COVID-19 infection may be a risk factor for long COVID. They noted that psychological distress is linked to inflammation and may also suppress the immune system, factors which they theorized could increase the risk for long COVID symptoms.
    “We need to consider psychological health in addition to physical health as risk factors of long COVID,” said the study’s senior author, Andrea Roberts, Ph.D., M.P.H., of the Harvard T.H. Chan School of Medicine.
    Reference

    Wang, S, et al. Associations of depression, anxiety, worry, perceived stress, and loneliness prior to infection with risk of post-COVID-19 conditions. JAMA Psychiatry. 2022. doi: 10.1001/jamapsychiatry.2022.2640


    Content OwnerOffice of Communications Last Reviewed Date9/23/2022
    _____________________________________________

    Ask Congress to Investigate COVID Origins and Government Response to Pandemic H.R. 834

    i love myself. the quietest. simplest. most powerful. revolution ever. ---- nayyirah waheed
    Governments don't have or own souls.

    (My posts are not intended as advice or professional assessments of any kind.)
    Never forget Excalibur.

    Comment


    • #4
      Well apparently 45% of US households (which averages three individuals) is stressed out about $$$ alone. No mention of covid needed:

      Inflation Causing Hardship for 45% of U.S. Households

      This would mean, according to the paper above, that a large percentage of the population is susceptible to long covid.

      Comment


      • Emily
        Emily commented
        Editing a comment
        Not 45%, though. Not all have anxiety disorders or co-factors.

    • #5

      David Fisman

      @DFisman
      ·
      39m
      Diseases that affect small blood vessels, like lupus and syphilis, are often referred to as “great imitators”, because their manifestations are protean…you have small blood vessels everywhere.
      You can reply to this conversation
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      David Fisman

      @DFisman
      ·
      21m
      Sars-2 latches onto a chemical called ace-2, which is ubiquitous in “epithelial” cells (cells that line your respiratory tract) but also “endothelial” cells (cells that line your blood vessels, and have important functions, like helping regulate blood pressure).

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      David Fisman

      @DFisman
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      16m
      It’s unsurprising then that sars-2 is starting to emerge as a great imitator in its own right. The virus was initially regarded as a dominantly respiratory pathogen, like RSV. But it’s becoming clear that it’s much more than that.

      Comment


      • #6
        https://www.youtube.com/watch?v=7lfGu_UA75A

        Comment


        • Emily
          Emily commented
          Editing a comment
          The comments to this video are very interesting. I guess that is all I can say on this thread about that.

      • #7
        I moved two posts off this thread because they were off topic. Vaccines and covid drugs are not the focus on this thread.

        Long covid is real and is most probably caused by the immune system's over-reaction to the illness. Apparently this over-reaction can cause tiny micro filament clots that the body does not have the natural process to break down:



        @RajeevJayadevan
        UK Cardiologist Rae Duncan explains Long COVID beautifully. Abnormal, prolonged immune response damages the inner lining of blood vessels. Micro clots form, of abnormal molecular structure, that the body’s usual mechanisms can’t get rid of. They show up in various organs.

        Start at 31:02

        Comment


        • Emily
          Emily commented
          Editing a comment
          Sharon, the first post promoted vaccines in relation to LC. I think people should know that people are getting LC even when fully vaxxed and boosted and when they have access to Paxlovid. They don't get better in the long run by getting another booster to try to fix it from what I read. If the chair of medicine at UCSF is not relevant, credible and useful sharing his wife's experience, what is?

          https://twitter.com/Bob_Wachter/stat...32704391983105

      • #8
        I fixed the link to the above video.

        Comment


        • #9
          https://recoverfromlongcovid.com/?page_id=273

          https://twitter.com/BiologistBunk

          Pinned Tweet



          Bunk the Biologist

          @BiologistBunk

          PhD in Immunology, Cell Biologist. Two-time covid long hauler. Admin of the FB group Long Covid - recover via Fasting /Autophagy Lactobacillus for Long Covid

          Boulder, CO recoverfromlongcovid.com/?p=517Joined November 2020

          Bunk the Biologist
          @BiologistBunk

          Jul 11

          I have updated my characterization of Long Covid and my comparison of #vaccineinjured and #LongCovid symptoms. The pattern of symptoms and median severities are nearly identical. I propose that both can be explained by low-level viral infection. https://recoverfromlongcovid.com/?page_id=413
          _____________________________________________

          Ask Congress to Investigate COVID Origins and Government Response to Pandemic H.R. 834

          i love myself. the quietest. simplest. most powerful. revolution ever. ---- nayyirah waheed
          Governments don't have or own souls.

          (My posts are not intended as advice or professional assessments of any kind.)
          Never forget Excalibur.

          Comment


          • #10
            https://clinicaltrials.gov/ct2/show/NCT05595369
            SARS CoV-2 Viral Persistence Study (PASC) - Study of Long COVID-19 (PASC)
            Drug: Paxlovid
            Study Description


            Brief Summary:
            This study is a platform protocol designed to be flexible so that it is suitable for a wide range of settings within health care systems and in community settings where it can be integrated into COVID-19 programs and subsequent treatment plans.
            This protocol is a prospective, multi-center, multi-arm, double-blind, randomized, controlled platform trial evaluating antiviral and other therapeutics for use in the treatment of Post-Acute Sequelae of COVID-19 (PASC). The hypothesis is that persistent viral infection (antigenemia) and/or overactive/chronic immune response (inflammation) are underlying contributors to PASC and that antiviral and other applicable therapies may result in viral clearance or decreased inflammation and improvement in PASC symptoms.
            _____________________________________________

            Ask Congress to Investigate COVID Origins and Government Response to Pandemic H.R. 834

            i love myself. the quietest. simplest. most powerful. revolution ever. ---- nayyirah waheed
            Governments don't have or own souls.

            (My posts are not intended as advice or professional assessments of any kind.)
            Never forget Excalibur.

            Comment


            • #11
              hat tip to @ann_mcnitt for link

              Dr Claire Taylor



              2h • 17 tweets • 5 min read Bookmark Save as PDF My Authors
              Clinical pearls for #LongCovid
              1. Find the clots. They are there. If not PE or DVT there are Microclots. 100% of all long Covid patients tested so far have them.
              2. If you don’t find PE on CTPA, do a VQ or dual energy CT. You will find the missed clots.
              3. Test for Autonomic dysfunction (Covid has a predilection for the ANS).
              A 10 minute stand test will suffice. batemanhornecenter.org/wp-content/upl…
              4. Then treat said autonomic dysfunction. Don’t tell people it’s ok to have a pulse of 160 doing the dishes. Great info at pots.org
              5. Assess for mast cell activation syndrome. Some will says it’s not real. It’s real. Check for dermatographism. Ask about alcohol intolerance, new allergies, new rashes, urticaria. Etc etc
              6. You don’t need fancy tests. Just treat it and see response. More info at @MastCellAction
              7. Don’t tell people exercise will cure it. It won’t. It didn’t cure #MECFS and it won’t cure long Covid.
              74% of patients felt worse with exercise in this study

              The Relationship between Physical Activity and Long COVID: A Cross-Sectional StudyThe relationship between Long Covid (LC) symptoms and physical activity (PA) levels are unclear. In this cross-sectional study, we examined this association, and the advice that individuals with LC re…https://www.mdpi.com/1660-4601/19/9/...HsvjzuwzCHgcsM
              8. Don’t tell people it is psychological. They have been infected with a level 3 biohazard with unknown repercussions.
              9. Don’t tell them to think themselves better, to try harder. They are already trying.
              10. Advise them on pacing, which is a way of using what energy is available without crashing.
              Familiarise yourself with post-exertional malaise- you are you are going to be seeing a LOT of it over the next few years. See @LongCOVIDPhysio
              11. Don’t dismiss chest pain. This shouldn’t even have to be said but unfortunately does.
              19% of long Covid patients in the coverscan study had myocarditisAlmost 1 in 5. Treat it. It’s not anxiety.

              Multiorgan impairment in low-risk individuals with post-COVID-19 syndrome: a prospective, community-based studyObjective To assess medium-term organ impairment in symptomatic individuals following recovery from acute SARS-CoV-2 infection. Design Baseline findings from a prospective, observational cohort study…https://bmjopen.bmj.com/content/11/3/e048391
              12. Try not to catch Covid yourself - you have between 1 in 10 and 1 in 20 chance each infection.
              Damage is likely to be cumulative. It affects all the organs as every organ has a blood supply.
              13. don’t think because you felt ok after one infection that this will be the case after 5 infections. (We can’t get long term immunity to this virus no matter what anyone on Twitter says).
              14. Don’t listen to people who say it’s a cold- it’s not. It’s really really not. Colds don’t cause organ dysfunction and blood clots.
              15. Anyone who uses this emoji 💉 over and over has an agenda. We knew the damage Covid caused in January 2020, well before the 💉
              16. Protect the children from all of the above. They will be the generation with early heart disease. #CovidIsNotOver #MedTwitter #COVIDIsAirborne #CleanAirClassrooms #dontlookup

              Comment


              • #12

                Dana Parish

                @danaparish
                ·
                18h
                People are often asking what blood tests they can request to look for Covid vascular damage/ microclotting issues
                Quote Tweet

                Resia Pretorius
                @resiapretorius
                ·
                Oct 29
                We have shown that molecules secreted by damaged endothelia may be used in interim ‘til we have microclot lab tests.Try pathlabs for VWF, e-selectin and PECAM-1, ALSO alpha2antiplasmin. Most trapped in clots - so soluble fraction = not total concentration @dbkell @doctorasadkhan twitter.com/Sunny_Rae1/sta…

                Comment


                • #13
                  https://onlinelibrary.wiley.com/doi/...002/jcsm.12931
                  Sarcopenia as potential biological substrate of long COVID-19 syndrome: prevalence, clinical features, and risk factors


                  Martone, A. M., Tosato, M., Ciciarello, F., Galluzzo, V., Zazzara, M. B., Pais, C., Savera, G., Calvani, R., Marzetti, E., Robles, M. C., Ramirez, M., Landi, F., and Gemelli Against COVID-19 Post-Acute Care Team (2022) Sarcopenia as potential biological substrate of long COVID-19 syndrome: prevalence, clinical features, and risk factors, Journal of Cachexia, Sarcopenia and Muscle, 13, 1974– 1982, https://doi.org/10.1002/jcsm.12931

                  Conclusions


                  Sarcopenia identified according to the EWGSOP2 criteria is high in patients recovered from COVID-19 acute illness, particularly in those who had experienced the worst clinical picture reporting the persistence of fatigue and dyspnoea. Our data suggest that sarcopenia, through the persistence of inflammation, could be the biological substrate of long COVID-19 syndrome. Physical activity, especially if associated with adequate nutrition, seems to be an important protective factor.
                  _____________________________________________

                  Ask Congress to Investigate COVID Origins and Government Response to Pandemic H.R. 834

                  i love myself. the quietest. simplest. most powerful. revolution ever. ---- nayyirah waheed
                  Governments don't have or own souls.

                  (My posts are not intended as advice or professional assessments of any kind.)
                  Never forget Excalibur.

                  Comment


                  • #14
                    You can skip the intro and go to 22:35 "Questions we will explore about long-haul covid" if you want.


                    https://www.youtube.com/watch?v=x2Wz8kp5ClU
                    Long-haul Covid symptoms and Cervical Instability overlap and Vagus Nerve Connection


                    Caring Medical


                    98.7K subscribers

                    401,307 views May 7, 2022

                    In this nearly 2 hour webinar, Ross Hauser, MD reviews some medical articles on long covid and discusses the overlap of symptoms in patients diagnosed with long covid and those who have cervical instability and vagus nerve degeneration. He begins by sharing a very personal statement and update on Caring Medical Florida.
                    _____________________________________________

                    Ask Congress to Investigate COVID Origins and Government Response to Pandemic H.R. 834

                    i love myself. the quietest. simplest. most powerful. revolution ever. ---- nayyirah waheed
                    Governments don't have or own souls.

                    (My posts are not intended as advice or professional assessments of any kind.)
                    Never forget Excalibur.

                    Comment


                    • #15


                      Dr Claire Taylor
                      @drclairetaylor
                      1/ Mast Cell Monday. What are ‘mast cells’? They are part of the immune system and constantly looking for trouble! Handy wee things when you need them- they release histamine+ other things to draw other cells to the area. The problem is when they go rogue…
                      10:20 AM · Nov 14, 2022·Twitter for iPhone
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                      Dr Claire Taylor
                      @drclairetaylor
                      ·
                      22h
                      Replying to
                      @drclairetaylor
                      2/ they can go rogue for no reason and this is called ‘mast cell activation syndrome’ Eg the mast cells are acting like there is a big problem and releasing all these chemicals eg Histamine and prostaglandins that can then cause symptoms in every part of the body.
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                      Dr Claire Taylor
                      @drclairetaylor
                      ·
                      22h
                      5/ the list of symptoms is endless but commonly fast heart rate, rashes, reflux, headaches, fatigue, gastro symptoms. Triggers can be food, temperature, smells, chemicals, exercise, stress or nothing at all. At worst can lead to anaphylaxis (should stress this is rarer).
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                      Dr Claire Taylor
                      @drclairetaylor
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                      22h
                      6/ how common is it? According to one dr up to 17% of the population. Answer is we don’t really know but it’s associated with #mecfs #LongCovid and other immune medicated diseases
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                      Dr Claire Taylor
                      @drclairetaylor
                      ·
                      22h
                      7/ why hasn’t your Doctor heard of it? It appears in the ICD-10 coding of diseases https://aapc.com/codes/icd-10-codes/D89.4… Yet there are no guidelines and not a huge amount of research. There is an international consensus statement

                      pubmed.ncbi.nlm.nih.gov
                      Diagnosis of mast cell activation syndrome: a global "consensus-2" - PubMed
                      The concept that disease rooted principally in chronic aberrant constitutive and reactive activation of mast cells (MCs), without the gross MC neoplasia in mastocytosis, first emerged in the 1980s,...
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                      Dr Claire Taylor
                      @drclairetaylor
                      ·
                      22h
                      8/ Are there tests? Yes. But any mcas patient will tell you that they are often negative - blood tryptase level -24 urine tests that have to be kept on ICE and degrade quickly.
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                      Dr Claire Taylor
                      @drclairetaylor
                      ·
                      22h
                      9/ is there treatment? Yes! Which is why we need to raise awareness of it as a condition. We have seen a huge increase in #mcas after Covid.
                      @BethanMyers
                      has written the best paper on it. I bow to her expertise.

                      pubmed.ncbi.nlm.nih.gov
                      Mast cell activation syndrome and the link with long COVID - PubMed
                      Mast cells are innate immune cells found in connective tissues throughout the body, most prevalent at tissue-environment interfaces. They possess multiple cell-surface receptors which react to...
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                      Dr Claire Taylor
                      @drclairetaylor
                      ·
                      22h
                      10/ treatment can start with most basic H1 and H2 blockers ( eg antihistamines and H2 blockers formerly used mainly for stomach problems). There are then various groups of meds that can be worked up to if things are not settling.
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                      Dr Claire Taylor
                      @drclairetaylor
                      ·
                      22h
                      11/ this study showed that Long-COVID patients had similar severity of numerous MCAS symptoms

                      ijidonline.com
                      Mast cell activation symptoms are prevalent in Long-COVID
                      The COVID-19 pandemic has spread throughout the world, with calamitous outcomes for some of those acutely infected and for those who struggle with Long-COVID (LC), also known as Long-Haul COVID and...
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                      Dr Claire Taylor
                      @drclairetaylor
                      ·
                      22h
                      12/ children also get it. This paper from 2020 questions whether multisystem inflammation is actually severe MCAS https://mastcellaction.org/assets/2021/09/17/53330e05-1552-4b3b-9238-25a39a80ec0b.pdf?v=1…
                      @LongCovidKids
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                      Dr Claire Taylor
                      @drclairetaylor
                      ·
                      22h
                      13/ is irritable bowel syndrome actually MCAS? This study showed IBS patients had increased mast cells near the nerves.

                      sciencedirect.com
                      Activated mast cells in proximity to colonic nerves correlate with abdominal pain in irritable...
                      Background & Aims: The mechanisms underlying abdominal pain perception in irritable bowel syndrome (IBS) are poorly understood. Intestinal mast cell i…
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                      Dr Claire Taylor
                      @drclairetaylor
                      ·
                      22h
                      14/ MCAS is associated with #MECFS #LongCovid #EhlersDanlos #pots It’s hard to get numbers on how many are affected but from clinical observation it appears to be a lot. So we have a treatable avenue but patients have to actively seek out diagnosis and treatment
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                      Dr Claire Taylor
                      @drclairetaylor
                      ·
                      22h
                      16/ MCAS is different from mastocytosis. In MCAS there are normal cells that rerelease chemicals when they shouldn’t. Mastocytosis is when the body makes too many mast cells.
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                      Dr Claire Taylor
                      @drclairetaylor
                      ·
                      22h
                      17/ I hope this is helpful for patients and #MedTwitter Picture of mast cell ( from https://marekdoyle.com/mast-cell-activation-messenger/…) #NEISvoid

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                      Dr Claire Taylor
                      @drclairetaylor

                      21h
                      Haven’t a clue where tweets 3+4 went. That’s what happens when you tweet and parent at the same time

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