by TheSoberCannibal in Reddit.com.
I’ve been a patient at Stanford for a few years now but I just had a really good appointment with Dr Bonilla there where I learned some new things I wanted to share. I’m going to keep this short, bulleted, and as brainfog friendly as possible. I’ll make the first sentences the important part. On that note, I’ll try to keep my facts as correct as possible but, as going to the doctor’s is the biggest thing I ever do, my brain fog was in full effect and I was pretty stupid at the time. Consult your doctor haha.
Quick about me: Male, 30, been sick about 4 years. Chief complaints are nausea/vomiting, pain, poor sleep, and obviously fatigue. GI problems including acid reflux, urinating blood, etc. I am unable to work and I’ve found that my maximum sustainable activity in a day is doing the dishes and 15 minutes of light stretching. The rest of the time I have to be laying down. No walks, driving, reading, etc. However, I am stupid and live in a near constant crash state, which I will talk about in a minute.
This was my first appointment since Stanford published this study on identifying super high cytokine levels in people with CFS.
Cytokines in a way that is relevant to us are produced as part of your body’s immune response. It seems that, at least in my case, there is a virus in there that we haven’t been able to identify or subdue yet. (I’ve tested positive intermittently for HSV6, EBV, Lymes.) Because we’ve had this big immune response for years, we get very very high cytokine levels.
Cytokines cause inflammation and inflammation is usually bad. It’s what causes the pain, GI problems, and can also cause brain damage. Dr Bonilla said that they recently diagnosed the first death caused by CFS and it was a woman who overexerted and had a stroke. The autopsy showed she had a stroke due to high cytokine levels and the effect they had had on her brain. Dr Bonilla was adamant that I never never crash, as it can cause irreversible damage. Even though I feel like I barely do anything and I’m missing out on life I am under orders to significantly reduce my activity level.
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