Research Group for ME/CFS, Chronic Disease, Ageing and Cancer

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  • Calluna
  • New Member

    • 41

    • June 15, 2021, 07:32:59 AM
Re: Calluna's journey
« Reply #45 on: July 26, 2021, 07:03:21 PM »
Day 34, catch-up

I've been really sleepy and out of it for the past few days, and it's been hard to eat very much. I'm a little bit better today, and have avoided expending too much physical energy by bingeing on Rimworld (with plenty of neck and shoulder stretching at regular intervals). After speaking with Josh on Discord, I'm going to add a quantity of resveratrol to my daily protocol to try to help with any other co-infections going on. I should be able to pursue enterovirus testing next week; my in-lab sleep study is Wednesday, and with some other stuff going on I don't have the headspace for it yet.


  • Calluna
  • New Member

    • 41

    • June 15, 2021, 07:32:59 AM
Re: Calluna's journey
« Reply #46 on: August 11, 2021, 04:10:44 PM »
Today I learned that you can have sleep apnea without gasping and choking in the night and, usefully, that I have moderate sleep apnea. The at-home study didn't pick up anything because my oxygen saturation didn't drop, but in the in-lab study they recorded an average of 20 arousals per hour (normal is up to 5) due to moving my jaw around to reopen my airway. CPAP order's in progress, and I should have it in a couple of weeks.

I don't think sleep apnea is the cause of all of my issues, however. My sleep doctor said that sleep apnea can and will progress, but the timescale is more like decades than years. My condition has gone pretty steadily downhill for the past four or five years, which is somewhat speedier than implied. Also, there's still the matter of the positive EBV EA test result. I do wonder if it is not severe enough to be causing major trouble; the Labcorp test comes with a disclaimer that it's qualitative and not quantitative, so the number shouldn't be used for an indication of severity, but with other more severe folks' levels much higher than my 15 (with a negative cutoff of 10) I'm suspicious.

I am going to go ahead with testing for enteroviruses, if I can get someone to route my samples appropriately. I'm also still planning on a CMV check and a recheck for EBV (even though no one will attest to the accuracy of the score). Finally, as I discovered that the IGF-1 test I thought I had two years ago wound up being free growth hormone, which is practically useless for my purposes, I'm going to get that tested as well. I have a childhood history of growth hormone deficiency, which was successfully treated, but I haven't been retested. My symptom set is a good match, so if my IGF-1 is low and the CPAP doesn't improve me sufficiently I'll consider pursuing that pain-in-the-thigh definitive testing. I know that IGF-1 is far from a perfect test, but it's a quick and easy start.

Anyway, I'm going to go get some sleep, and be thankful that I have a treatable piece of the puzzle.

tl;dr enterovirus=unknown, growth hormone deficiency=unknown, sleep apnea=unexpectedly yes