Do you notice any changes "in the way narcolepsy affects you" when you are dealing with other autoimmune diseases?
Recently had a Mono test and the Epstein-Barr virus (EBV) my level was high. But they couldn't tell me if I was recovering from a recent infection, or if it was just from the past (I had Mono when I was 24).
Also looking at Lyme disease, which reading on line many people with Lymes have high EBV levels.
I know something is not right but I'm not sure yet what it is?
Hi Ranger! I looked online and sounds like the lab or doctor would be able to tell if infection was past or present because the test will measure three different antigens. You might ask if your test did, and see if the interpretation is the same as this:
I've thought there was something else going on with me too and it turned out to be narcolepsy, but if I've been feeling especially tired or un-well for a stretch I first consider depression and if I can't rule it out I tell my doctor. To rule it out I stop everything and 1) follow sleep hygiene recommendations and get extra rest, 2) eat vegetables 70%, carbs 15%, protein 15%, 3) get (not quite) daily exercise and I slow down a little if it's too much. Usually that's what I really needed. But I still consider my symptoms and ask questions at doctor appointments because I don't want to overlook any opportunity to feel well. And when I have a few good days in a row (remission?) I try to recall what preceded that. Often it's the three things I mentioned above, other times it's simply random. If you're looking for a missing puzzle piece you or your doctor might find it. Always note the good days when they come and go. I hope you have more of those soon!
I tested high in one band, two doctors can't tell me yes or no I have mono..., got reamed out because I don't want to do drugs just to treat symptoms, was asked stupidly "how are you disabled", headed to a Lyme specialist next week. But even the Lyme Lab tests and medical community are also clueless re Lyme disease.
We must be our own best advocate....the lab tests are almost unreliable...the doctors trained to prescribe drugs to treat just symptoms. You know your own body better than any Lab Test
My best analogy for the doctor / drug thing is like: A car mechanic, when you take your car into the shop and tell him "there is a knocking sound in the engine" and the mechanic says hum, I don't think there is a problem - "turn up the Radio..."
In the end we must do what we feel is right for ourselves and what we want to do. That will lead to healing and feeling good about yourself and your choices.
Still on the hunt to find out what is going on.
I did find info that said sometimes narcolepsy goes into remission for brief periods but can/will return. There is a kind of fatigue greater than narcolepsy, I would take narcolepsy any day over what is going on now. At least narcolepsy was my "normal", then everything changed.
Very best to all of you!
Ranger
Carol said:
Hi Ranger! I looked online and sounds like the lab or doctor would be able to tell if infection was past or present because the test will measure three different antigens. You might ask if your test did, and see if the interpretation is the same as this:
I've thought there was something else going on with me too and it turned out to be narcolepsy, but if I've been feeling especially tired or un-well for a stretch I first consider depression and if I can't rule it out I tell my doctor. To rule it out I stop everything and 1) follow sleep hygiene recommendations and get extra rest, 2) eat vegetables 70%, carbs 15%, protein 15%, 3) get (not quite) daily exercise and I slow down a little if it's too much. Usually that's what I really needed. But I still consider my symptoms and ask questions at doctor appointments because I don't want to overlook any opportunity to feel well. And when I have a few good days in a row (remission?) I try to recall what preceded that. Often it's the three things I mentioned above, other times it's simply random. If you're looking for a missing puzzle piece you or your doctor might find it. Always note the good days when they come and go. I hope you have more of those soon!