Undiagnosed circle of hell.

dlofnep wrote: »

It's lucozade specifically - the original, fizzy bottle.

I'm aware of the issues surround chelation. I understand that it's too risky to take a chelating agent while I still have fillings as it may pull more mercury into my system. I will consult my dentist this week and see what happens.

dlofnep wrote: »

Staying positive. I've started swimming also to help me at least get my fitness levels up. It can't be good to sit at home all day and do nothing - if I am to fight this, I have to be as fit as I can. I do swim, then sauna which is useful for moving the mercury out of my system. I'm going to test my mercury levels once the last piece is replaced and then start the detox process.

Fingers crossed!

dlofnep wrote: »

If I must be honest - I think all those names are a cop out from lazy doctors who don't want to pursue the root cause of these illnesses with the rigor that it deserves.

I was told that I "might have ME" about 5 years ago just because I told a doctor that I was tired and ill alot. He didn't even entertain looking into it. Did nothing beyond a basic blood test and certainly wasn't in a position to diagnose me with anything.

I'd be weary about listening to any doctor that throws up a diagnosis without knowing what's causing it. The body doesn't just break down one day and tell your immune system to stop working, and your body to become lethargic. There's always a cause. And that's what my mission is - to find out the cause, and not to get some GP who's trying to rush people in and out as fast as possible to get a quick buck to give me a catchy phrase.

A diagnosis is irrelevant unless there is a cause that's found. At least, that's my feelings on the topic.

http://www.cdc.gov/cfs/general/causes/index.html

Recently published research suggests that infection with Epstein-Barr virus, Ross River virus and Coxiella burnetti will lead to a post-infective condition that meets the criteria for CFS in approximately 12% of cases. The severity of the acute illness was the only factor found to predict which individuals would have persistent symptoms characteristic of CFS at the six-month and one-year period following infection.

Frank (1995, p. 76) proposes that three types of
narrative exist, the restitution, chaos and quest
narratives, and that in any illness narrative all three
types will be told, with one type guiding the
narrative at any one time.

Restitution narrative

The restitution narrative is framed as the most
common narrative amongst the recently ill but least
often evidenced amongst the chronically ill (Frank,
1995, p. 77). The basic plot of the restitution story is
that yesterday I was healthy, today I am sick but tomorrow I will be better (Frank, 1995, p. 77). This
narrative type is about movement away from and
back towards health, exploring the experiences and
meaning of investigations and treatments.

The ill person’s own desire for restitution is
compounded by the expectation that other people
want to hear restitution stories. The sick role is a
master narrative in Western health care espoused in
Parson’s sick role (Parsons, 1951) with the ultimate
expectation that an individual will get well. People
learn from institutional stories the model of how
illness stories should be told. Media abounds with
stories of those who have recovered and continued
with their lives (Kroll-Smith, 2003).

The restitution narrative reflects a modernist
expectation that for every suffering there is a
remedy. The emphasis is on the sufferer to solve
the puzzle of illness (Frank, 1995, p. 80). This
narrative type is one often used in the media to
promote recovery from illness and portrays the
ability to over come anything. For people living
with a chronic illness, hearing stories of recovery
can be both inspiring, that there is hope of positive
change, and intimidating if they are unable to see
anyway of taking steps to recovery and experience
social pressures to overcome illness.

The implicit genesis of illness in the restitution
narrative is an unlucky breakdown in the body. The
causal act is not drawn upon because the individual
does not focus on illness, but rather on the recovery.

Chaos narrative

In the chaos narrative, the plot is that life will
never get better; no one is in control. Sufferers
describe experiencing an ‘‘emotional battering’’
(Frank, 1995, p. 101) stemming from their rejection
of their suffering by clinicians and socially by
others. In the chaos narrative, the individual makes
attempts to reassert predictability but these generally
fail and efforts have a cost for the individual.
The stories reveal vulnerability, futility and impotence
(Frank, 1995, p. 97) and can be difficult to
listen to. Chaos narratives depict people ‘‘sucked
into the undertow of illness’’ whilst restitution
narratives illustrate illness as ‘‘transitory’’ (Frank,
1995, p. 115).

Quest narrative
In the quest narrative, individuals accept illness
and seek to use this, believing that something is to
be gained through the experience. Illness is seen as a
challenge and an impetus for change (Frank, 1995,
p. 166). This differs from the restitution narrative
where individuals are not solely seeking recovery
from illness.

Three subtypes of quest narratives are proposed.
The first is memoir in which events are related
simply. The second is manifesto in which illness
becomes a motivator for social action or change.
The third is automythology in which illness is
expanded to reveal fate or destiny (Frank, 1995,
pp. 119–120).

The person whilst no longer ill remains marked
by illness. A hero’s status is derived from being
initiated through agony to atonement. When this is
the only narrative put forward the reader is
encouraged to critically evaluate it where a move
straight from the onset of symptoms to a quest
narrative without apparent suffering appears ‘‘too
clean’’ cut (Frank, 1995, p. 135).