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For those with CCI can you describe disease state/symptoms/progression?


Senior Member
I’m thinking I’ll need to rule out CCI at some point but, for those who have experienced it, did any of you guys have periods of remission or was the disease state constant?

I’ve had brief periods of remission and not sure if that’s something you would see with CCI. Apart from headaches/tension at the base of my head occasionally and sore/tight neck/traps, I’m not sure if I have any other symptoms that fit much besides temperature intolerance.
Ih aven't looked tino it very much but i have similar to wht you desrcibe, also that is how my cfs started i think. ate some heavy histamine food(HI) then got what you describe real bad, went away when bed bound nw coming back after moer histamine raciton i think. intersted in this thread. i have temp issues too but before so.
Quick summary of my illness:

Sudden onset (like a switch) in the spring of 1993. After about a year and a half of denial, diagnosed myself with CFS. By this time I was a first year medical student. Dr Jay Goldstein helped me to function as best a possible. I even had 1 week without symptoms after he gave me a ketamine infusion, but after a week the symptoms returned and I couldn't repeat the experience. I managed med school in pre-clinical years but when I hit the hospital rotations had to take time off between rotations.

In 1997, I had a remission of about 80% that allowed me to finish my medical training without any more breaks. I wasn't able to do anything else: after work I was in bed until next shift. The remission lasted until 2009, when I had to drop a new full time job after the first day.

I tried treatment for Lyme disease and Bartonella in 2011-2017 with some mild success (decreased hand joint pain and stiffness, for example). Have been seeing Dr. Kaufman since 2015 with only mild benefit.

Diagnosed with CCI in 2020 by Dr. Bolognese, after Dr. Kaufman sent my cervical MRI (done for C6 radiculopathy in 2016) to Dr. Bolognese and he read it as potentially positive.

So, the answer is yes, it's possible to have significant remissions with CCI. No, I can't explain how that works...;)