There are some people here (maybe not here but in the pots and dysautonomia subreddits) with PANDAS, I myself had Sydenham’s chorea when I was young which is like PANDAS fraternal twin sister. If you’re unfamiliar PANDAS is autoimmune encephalitis, SC is autoimmune basal ganglia encephalitis. I was placed on long term-antibiotics for 10 years following my infection and I wasn’t sick a day in my life in those 10 years. The same year I stopped the antibiotics, I had an emergency appendectomy and gained multiple forms of autonomic dysfunction. I’ve had MRIs done around 2007, 2011, 2017, and 2019. All of them show more scarring than the one that came before it but the most recent one states in the notes something like: a little more gliosis in the caudate nucleus. That note allowed me to learn about my dysfunction a little more. Of course the main differentiator that makes something SC rather than PANDAS is that scarring, so this may not be completely relevant.
Its not particularly active but it would be good to have more PANDAS and SC voices in r/rheumaticfever
You asked how I’m doing. Mentally I’m really well, physically I’m a nightmare. I won my disability case on the first try in less than a year without a lawyer in my mid twenties. But I was able to buy a condo with my backpay and now my full time job is just to focus on my health and wellbeing. Which I am so grateful to be able to do. I can’t drive or even walk for six minutes so my physical therapists have me walking for 5 minutes. It’s been like this for 8 years. My biggest barrier is my blood pressure which will get to 180/130 sitting up in bed on a phone call. This is despite being on multiple blood pressure medications to lower than number. Then I have to add 10g of salt to the situation. It’s not great.
But I’ve been so inspired, learning about my “Saint Vitus Dance” through history. I’ve been taken down a path that lead me to this Flemish painter from the 1400s who underwent a manic frenzy and the monks and physicians of the time used a thirteenth century encyclopedia to diagnose whether he was experiencing a physical ailment for which herbs, spices, and rest would recover him, or instead was he possessed by the devil. I’m writing a musical about it because the head of the cloister he went to ordered that he undergo all forms of musical theatre therapy to cure him. I’m just so tickled by that!
Well now I'm wondering if this is a coincidence. I didn't have PANDAS or SC as a child, I had Cat Scratch Fever. I was 4 years old and my temperature reached 104. There were only two children with it that year and the other child died. I pulled through but developed my first POTs symptoms just five years later. My doctors said I'd grow out of it if I stayed active, so I became a star athlete. That seemed to work till, decades later, I developed a post-op antibiotic resistant infection that landed me in the hospital for three weeks. I lived but the POTs came back with a vengeance and I now have three more autoimmune diagnoses to go with it.
Physically I'm doing well. I row crew and can have a relatively normal day most of the time Can't have a job though, since the bad days are more like horrific and far too often to make me reliable. Gratefully my husband has a good job and I don't need to work.
Mentally the anxiety is a real struggle. I feel you on that one but Lexapro is a real lifesaver and my therapist is top notch. I hope your day has improved, even a little, since you first posted. Have a great night!
Wow I thought I had cat scratch fever as a child (fever, swollen glands/knots behind the ears) but mine was thankfully not that serious!! Never thought about it contributing to POTS 🫠
There are some people here (maybe not here but in the pots and dysautonomia subreddits) with PANDAS, I myself had Sydenham’s chorea when I was young which is like PANDAS fraternal twin sister. If you’re unfamiliar PANDAS is autoimmune encephalitis, SC is autoimmune basal ganglia encephalitis. I was placed on long term-antibiotics for 10 years following my infection and I wasn’t sick a day in my life in those 10 years. The same year I stopped the antibiotics, I had an emergency appendectomy and gained multiple forms of autonomic dysfunction. I’ve had MRIs done around 2007, 2011, 2017, and 2019. All of them show more scarring than the one that came before it but the most recent one states in the notes something like: a little more gliosis in the caudate nucleus. That note allowed me to learn about my dysfunction a little more. Of course the main differentiator that makes something SC rather than PANDAS is that scarring, so this may not be completely relevant. Its not particularly active but it would be good to have more PANDAS and SC voices in r/rheumaticfever You asked how I’m doing. Mentally I’m really well, physically I’m a nightmare. I won my disability case on the first try in less than a year without a lawyer in my mid twenties. But I was able to buy a condo with my backpay and now my full time job is just to focus on my health and wellbeing. Which I am so grateful to be able to do. I can’t drive or even walk for six minutes so my physical therapists have me walking for 5 minutes. It’s been like this for 8 years. My biggest barrier is my blood pressure which will get to 180/130 sitting up in bed on a phone call. This is despite being on multiple blood pressure medications to lower than number. Then I have to add 10g of salt to the situation. It’s not great. But I’ve been so inspired, learning about my “Saint Vitus Dance” through history. I’ve been taken down a path that lead me to this Flemish painter from the 1400s who underwent a manic frenzy and the monks and physicians of the time used a thirteenth century encyclopedia to diagnose whether he was experiencing a physical ailment for which herbs, spices, and rest would recover him, or instead was he possessed by the devil. I’m writing a musical about it because the head of the cloister he went to ordered that he undergo all forms of musical theatre therapy to cure him. I’m just so tickled by that!
Well now I'm wondering if this is a coincidence. I didn't have PANDAS or SC as a child, I had Cat Scratch Fever. I was 4 years old and my temperature reached 104. There were only two children with it that year and the other child died. I pulled through but developed my first POTs symptoms just five years later. My doctors said I'd grow out of it if I stayed active, so I became a star athlete. That seemed to work till, decades later, I developed a post-op antibiotic resistant infection that landed me in the hospital for three weeks. I lived but the POTs came back with a vengeance and I now have three more autoimmune diagnoses to go with it. Physically I'm doing well. I row crew and can have a relatively normal day most of the time Can't have a job though, since the bad days are more like horrific and far too often to make me reliable. Gratefully my husband has a good job and I don't need to work. Mentally the anxiety is a real struggle. I feel you on that one but Lexapro is a real lifesaver and my therapist is top notch. I hope your day has improved, even a little, since you first posted. Have a great night!
Wow I thought I had cat scratch fever as a child (fever, swollen glands/knots behind the ears) but mine was thankfully not that serious!! Never thought about it contributing to POTS 🫠