Hi Marco,
Here is a modified version of what I wanted to send to Otis (I'm happy to share but you're just going to have to trust that the changes aren't substantive but needed to be made).
First with regards to heat and cold intolerance, those are two separate issues. They are often framed as a single question but that implies a shared underlying mechanism, typically autonomic. I have had problems with heat and cold intolerance from very early on. I thought that they were likely related. In 2009, my long standing intermittent diabetes insipidus became florid (please stop me if you've heard this before) and it was treated with desmopressin. Once my fluid volume was normalized with the 'desmo' my cold intolerance issue completely and (apparently) permanently resolved (so did all of my OI issues along with other problems I had not associated with low fluid volume although I knew I was experiencing episodes of high fluid loss). In retrospect, I was constantly dehydrated and that was causing me to always feel cold (I was cold - at least peripherally). Others whom I have PM'd with have had similar experiences with desmopressin.
Yeah, no more cold intolerance issues for me. However, I continued to have both night sweats (waking up drenched - especially around my head neck and groin) and a strong intolerance for heat and sun exposure. The night sweats have resolved since starting Valcyte last May. I can't swear that its viral but I have one or two minor episodes in the first few months since starting Valcyte and none in the last 6-7 months. I used to have several episodes a week.
So, for me, that leaves the heat intolerance. This seemed to be you primary complaint. It is very clear to me that my heat intolerance has everything to do with an inflammatory response. The severity of this response for me is also somewhat less intense since starting on Valcyte but many things can bring it on and it is often (but not always) accompanied by facial/head and neck swelling. I have found little that helps with this except getting to a cooler place (I literally stood in the walk-in cooler at Costco for 20 minutes after over doing it by making a trip to Costco when I wasn't well enough rested). I've heard of patients wearing cooling vests to combat this. During the summer (especially now that my DI is under control) I dread the heat. I suspect that this is a relatively common response across a number of diseases. A recent study found that MS patients do far worse in warmer weather (I can find the reference if you're interested); poor cognitive function, etc. I suspect that this is an inflammatory response occurring primarily in the brain and spinal cord (it's even happened a few times to me when I've fallen asleep under too many blankets - when I first get in bed it helps with my neural symptoms if I warm up as much as possible but too much heat while I'm sleeping and I wake at 3 am with my face and neck swollen and red).
that is interesting the idea it worsens inflammation, thats probably it, last summer was just terrible and the sun too makes me break out in 3 dif ways. I really need to move to the west coast rainy area sometime. I used to prefer the warm weather but now I look forward to rainy days, I dont like really cold winters either but at least you can bundle up.
