Hello, I'm a 32 years old guy from Argentina and suffering this
understandable disease for 6 years. My story is a little boring for the rest of
the people, but maybe interesting for those who care and suffer.
doctor to doctor (next week I'm going to see another one), I'm trying to solve
this puzzle myself, as they don't have a clue or interest, which is worst. In my
case, in particular, I have allergy to dust and its accrues since I was a kid
(this means that my immune system is very sensitive and aggressive). Now I found
that I've had the Epstein-Barr virus sometime in my life, but according to the
doctor, it's gone.
I think it still there in latency form and has been
reactivated in a period of hard stress during college. Then, there are two
possibilities: my immune system can't beat the virus because it's damaged or it
"thinks" it is still out there and tries to kill him at any price, which means
it's destructing itself (the system). So, this is my theory of the origin and
possible treatment based in my story and a LOT of information, specially from
WHO and NIH (USA) : BAD IMMUNE SYSTEM + ALLERGY + EBV + STRESS = CFS/ME.
Aciclovir could be a good drug to start a REAL treatment to cure it (my last
hope), as NIH's website says, and NOT the drugs the doctors gave me for my
"depression" and "anxiety", or vitamins of all kind, not to mention a
"psychological disease", etc.
Also, I want to say that I tried different and alternative therapies like CoQ10
in tablets, Ginkgo Biloba, Magnesium, Ozone, but none of them had effect.
NOTE: I have all kind of tests with normal values: MRI of brain, EEG, EMG, ECG,
COMMON blood tests, etc (I don't know the right acronyms in English), and by the
way, these tests made me look like a hypochondriac person (couldn't find the
translation for that word) to the rest of the people: doctors, relatives,
The only one who knows how I feel is ME (ironically, it stands for myself and
the disease), and I have ALL the symptoms you know.
But some tests didn't looked so well: the presence of the EBV, high level of
cortisol (again, no translation) related to the stress hormone, my allergy
(which I treated a long time ago) and a VERY IMPORTANT blood test yet to be
done, but first I must "convince" the doctor to order it: the possible presence
of T-cells (CD 4) in higher quantities than the CD 8 in the lymphocytes, or
something like that (he will know) which will really confirm I have ME, since
people with ME share this "presences" as far as I know (that is the "arrogant"
part where ME makes me look like).
Finally, the "name issue": this must be the disease which has more names than
any other: CFS, Post-Viral CFS, ME, Infectious Mononucleosis, Soldier Syndrome,
"The Invisible Disease", etc.
So, which specialist should you choose if you have such a variety of symptoms
which apparently have nothing to do with each other and some of them appear as a
unstoppable snowball effect and there is no clinical doctor to guide you?
You do what they don't: try to tie loose ends and fill the blanks with common
sense, rather than medical knowledge and "suggest" them to try this or that
without touching their egos (the EBV study was suggested by me, just like the
lymphocytes one, and many others).
"Now I have bad days and terrible days (my good days are gone)..."
It's a continuous FIGHT with the disease, with the doctors (lack of interest or
knowledge), with relatives (lack of understanding) and life itself.