I wrote this letter to Francis Collins 6 years ago. During that time my health has become worse and treatment options have seemingly dwindled to nothing. Yet against all odds, I still remain hopeful. Happy NY to all.
"where have all the Mothers gone?....they're laying in bed, on couches,
in recliners felled by CFID'S"
I am the 47 year old mother of an 8 yo son. Six and 1/2 years ago I was
felled by a mysterious, debilitating disease. I could no longer function
at all due to debilitating fatigue, pain, inability to stand or even sit
upright for more than 5 minutes (POTS/NMH).
Needless to say this was very frightening for the mother of a then 2 year
old; a previously healthy, active, professional woman. I went from doctor
to doctor to doctor. I was hospitalized 5 times during the first year of
the illness. Shockingly, when noone could find any abnormalities with
standard blood tests, x-rays, ct scans, mri's, ekg's,
echo-cardiograms...etc, I was told I was depressed and should take a
I was shocked and dismayed by this treatment. I was being cast aside as a
neurotic, depressed, hypo-chondriac because I fit into the medical world's
stereotypical view of a 40 year old, thin white woman, with unexplainable fatigue and
pain...not physically sick, just depressed.
Finally, when I determined that mainstream medicine had nothing to offer
me, I started to see "alternative", out of the box doctors....integrative,
lyme literate, cfid's experts, homeopaths, acupuncturists, chiropractors,
It was then that I learned I had hi viral titres to Epstein Barr,
Cytomeglavirus, HHV6-A, Parvo B-19, Coxsackie. I was positive for
Borrelia, Bartonella, Erlichia, Babesia, Mycoplasma Pneumonia, CPN...etc.
You name it I had it. Suddenly there were medical explanations why I
couldn't move due to exhaustion...my immune system was in constant
overdrive fighting all of these infections. My T-cells and NK cells were
well below normal. My body was literally fighting for it's life.
Over the past 6 years, our family has spent 100,000's of dollars try to
get me back my health. We have tried every treatment out there and to
date nothing has worked.
When the news of XMRV broke in Oct of 09, and I tested positive for the
retro-virus, I was actually happy to find out I was carrying a potential
cancer causing RV. Crazy!!!...but I thought finally maybe there will be
serious science and medical attention paid to the disease I am suffering
from. The disease that has robbed me from participating in my son's life.
I write this note hoping that the government will finally give this
disease the attention it fairly deserves. I pray for the day that I can
walk, run, bike ride, rock climb and ski with my son.
Please help me to regain my health. I am not a depressed, malingerer. I
am a middle aged mother who dreams of skiing and surfing again.
Will 2017 bring us back to life again?
Blog entry posted by Navid, Dec 31, 2016.