My ME/CFS

The infection which changed my life.

I was 24 years old, in 1998, when I contracted an acute case of mononucleosis, the doctors feared in the first place that I had contracted the HIV virus, because I had the lymph nodes as large as tennis balls, high fever (and in most cases do not exceeds 37.5). The worst, however, came later: I get tired with incredible ease, I go to bed at night until half past ten, in short, never go out in the evening. When i come back from work , don’t want to speak or meet anyone, including my parents, because i’m so tired.

At first the neurologist said i was Ok and that “all was in my head” (yes, the same phrase i heard in Canary in a coal mine preview!), then depressed (he prescribed me SSRI which , as everyone can imagine, gave me more sleepiness). The hematolog suggested me to do some shopping (i thought “of course, with your credit card, please!”).

Thinks would go better if you could do some snaps during the day. Since mononucleosis all my throat and neck area is hypertrophic . I’ve been diagnosed with sleep disorders (sleep apnea), had two surgery (nasal septum and uvula removed) but nothing changed.

Started a lot of research for solving this illness, trying to avoid gluten , then i discovered the mercury intoxication issue; have been test allergic to thimerosal with patch test since 1988 (14 years old) but never knew that my five dental amalgams, which i have been in my mouth for 23 years eroding for bruxism  , contained mercury, and thimerosal is mercury salt. However , removing safely amalgams and starting a detoxification program didn’t improve my situation.

What i really need is to lay in bed (i.e. horizontally) with eye closed , and i feel better as i were sinking in the bed , with my heart beating faster and breath deeper as if it had been low in battery till then.  Also sun exposure (one hour for day without UV sunscreen during spring and summer) helps me , it gives me more energy and feel better. I know that i cannot ask my body more than it can give to me, but …. i’m worsening year by year. That “snap after having lunch” has turned to “snap before having lunch” , even with the healthiest food (i.e. organic salad).

The worst thing about being sick is that even if i love staying with other people , go out , take a bicycle ride , living sometime in parties with my favourites DJ (i’m a social man)  i feel depressed because i’m  alone but with best friend, a bed. Moreover, i was left because living with a person who hasn’t enough energy to live the life with the beloved person is really something terrible, but i’m not sad i’ve understood that even if loved that person i hadn’t enough energy , which means attention, thoughts, care , sharing experiences and lifetime together ! . I’m lucky , i know, because i still can go to work and i’m still smiley because i AM smiley, but it’s a struggle every day.

I’m updating my situation , experiments, therapy on my blog and hope that soon a cure for our illness will be found.