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MCAS/LC/PACS
I have been very ill since receiving my 1,2 and 5 covid vaccine. I’ve been diagnosed with Long Covid and MCAS. I have been quite ill for the last year. My MCAS can flare up when cleaning, possibly chemicals, definitely pet hair dust. I wear N95, eye goggles when cleaning. I need to bath following, having dust, dander on my clothes and skin is problematic as well. I juice daily, carrot, apple, celery juice. I make smoothies as well banana strawberries and lots of blueberries. I absolutely stay away from processed foods, sugar, white foods like bread pasta. I take 100mg of DHEA because I have andrenal fatique and the usual labs do not test for that. I need extra D3, iron. I also now require a lot more fiber because my stomach can just become wrecked. I’m currently recovering from some mass shrinking muscle event as well as a rare bacterial infection in my spine. The bacteria was just common mouth bacteria that found a inflamed home in my spine. I was hospitalized for 10 days, then transferred to a SNF for 5 weeks for iv antibiotics. Just crazy…I am in Austin and am working with an ancient, brilliant, experienced immunologist. I was referred to him by the UT Long Covid clinic. It’s a tough road ahead of me; this path, I am uncertain of. I was pretty scared in that facility and was saying goodbye to my loved ones. I’ve been on this road for almost 4 years. Really hard to believe at times because I don’t have any friends going through this. I know my UT study cohort is large, but personally I have been very alone and isolated and until very recently many of the doctors that I have seen were dismissive. I don’t work with them anymore. I use my Dr. at the Long Covid clinic for referrals and those dr.’s for referrals as well. Closing the loop, excluding doctors that aren’t interested in the conversations I need to have with them. It feels like a treacherous path that I have experienced, but I am still here fighting hard, making progress sometimes leaps and then like now, baby steps. I’m sending you all ❤️ love
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..... I felt quite upset reading all this that you are going through. My life as I age has not been pleasant but what you have been through, are going through, and will be going through sounds very overwhelming. The pain, the dietary restrictions, the day to day steps you have to abide by whether you feel like it or not; the length of time this has been going on - and the affects with family and some seemingly uncaring physicians - it's a lot to cope with and even for those with large families and many friends do feel alone and isolated, and you "are" going through this particular nightmare "alone/on your own" . Not sure of your age, sound like a young adult... but frightening, depressing, and life-changing going through this at any age: hope you get some comments to help you cope... and that your good days start and continue to outnumber the bad; best wishes for your future, "J"
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3 ReactionsHi J, thank you. I’m 55; I try to consider myself young. It is overwhelming at times. I’m getting quite a bit of psych help right now and I was stubborn to come to terms with this initially. I’m starting an outpatient program to develop better coping skills because I do have difficulty with all of this and my family doesn’t want to hear about my health problems anymore. My friends could become exhausted as well. It’s exhausting for sure, not only for me but for them too. It really opens my eyes to what handicap folks must sometimes experience. I’ve come to the conclusion this is pretty natural, those around me having their limits. I’m a naturally compassionate caregiving person. My friends think my brothers are arses, but I still think they’re pretty great. I remind myself that no one is a perfect human, inside spiritually or physically lol. I would like to make a suggestion and remember this stuff (Long Covid, newly acquired autoimmune diseases) , they fall on a spectrum, some people are worse, some better than me. And there’s folks in my study cohort that were worse than me, who are continuing to improve. I try to do everything I can to help my body; I definitely feel the difference when I don’t. I dropped my routine from my 1st bout of Long Covid to my 2nd bout and my 2nd case of Long Covid was also exacerbated by my hyperthyroidism (again another doctor not willing to listen to me, Endo) and here I failed myself as I knew better, I knew how I felt- I failed to be a good advocate for myself. It’s funny…doctors don’t always want to know the gory details of how I came to be a good advocate but they all want me to become one. They don’t want me googling or God forbid I tell them or bring them an article or suggest such a thing. I’m so fortunate to have that one dr. that trusts my ability to read online articles with discernment. I have a space to have these discussions like how is my Long Covid going to behave with my body in hyperdrive? It is tough. I’m not looking forward to aging and I do have some fear there. Thank you. My last nurse that helped me prepare for discharge recently said “plan for the worst and hope for the best “ It’s difficult to do all of this without getting a little depressed, neurotic, whatever…I am definitely not exempt from that.
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2 Reactions@dreaminasecond Good morning. It sounds like you are having a really tough time.. I am glad that you found a long covid clinic and a good doctor at UT. Is the MCAS under control? And, could you please tell me what PCAS stands for? Im not familiar with it.
I honestly don’t know what I can do to help, so we’ll just wait for other members to chime in.
What brought you to suddenly post about your MCAS? Has anything changed?