Can anyone help me pronounce ME? The entire name? I've tried many times myself, but I don't know how.
my-
AL-jik En-
SEF-uh-lo-
MY-uh-
LY-tiss
But then again I heard Dr. Enlander (orig. from Ireland) say it with a hard C as in En-
KEF-uh-lo-
MY-uh-
LY-tiss
island, hello! I was diagnosed with epsteein bar when I was around 23. Before that, I was sick with two respiratory infections back to back... after i felt better, I found myself always tired...
I used to be able to go out, party, or stay up reading (whatever it was I was doing) and go without rest for two days....and not skip a beat...
But after I got sick, I was tired all the time. I would go to the museum with my bf (a small one), and not be able to walk but a few steps. I would sleep every few hours...
I don't know what other tests for a "diagnosis" I can take. Can anyone tell me of a list??
With ME/CFS, there are many abnormalities and possible co-infections. Epstein Barr (EBV) is one, so is Cytomegalovirus (CMV), HHV-6 (a Herpes family virus), Mycoplasma species (associated with Gulf War syndrome), Chlamydia Pneumonia (not the same as the STD), Parvovirus B19, enteroviruses, and more.
Oh, and some with ME/CFS also have Lyme disease.
There are other tests too. One is a Head Upright Tilt Table test to test for an autonomic dysfunction called Orthostatic Intolerance.
Other tests looks for immune system abnormalities - things like low Natural Killer Cell function, inflammatory cytokines, IGG subclass deficiencies and more...
Some PWC also have other hormonal problems - thyroiditis is not uncommon.
So you see, this is where a good doc comes in - they can examine you, test some things and then try to treat some of the problems. If you still have high EBV titers, you might be a candidate for an antiviral. I'm on Valtrex for EBV, which is the same Rx given for people who have Herpes I or II or Shingles.
Aside from testing, there may be some things you can do on your own. Freddd has been helping many of us do a
B12 protocol - with over the counter supplements. It's been helping me a whole lot and I haven't even been on it all that long.
If you have gastrointestinal issues (and maybe even if you aren't aware of them), trying some dietary changes can be huge. Years ago, I put myself into remission by eliminating gluten and other grains. Other PWC have issues with dairy.
If you stick around, you'll realize that you don't have every single symptom - there are too many and are too varied. I don't have the Orthostatic Intolerance problems that some PWC have, but maybe they don't have such bad gut problems like I do. There's a whole range of symptoms that are possible.
If you describe some of your worst problems, we can probably point you in the right direction about possible testing and treatments.
I'm scared too. I stick around here because I am amongst the experts in this disease - the patients who have learned how to be their own advocates, their own doctors, and their own lobbyists. Learning from them is my best weapon against this horrible disease.