Will 2017 bring us back to life again?

Blog entry posted by Navid, Dec 31, 2016.

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

vacation.



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,

etc.



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.
Gingergrrl, Jennifer J and MeSci like this.
  1. undiagnosed
    Hi @Navid, glad you're hanging in there. I have a few questions regarding some details of your case. If you've posted this information elsewhere, you can direct me there.

    Do you have chronic Idiopathic CD4+ lymphocytopenia? What is you CD4 count history?
    Have you had a full lymphocyte subset performed? Do you have that data?
    Have you had quantitative immunoglobulins measured? Do you have that data?
    Have you had IgG subclasses measured? Do you have the data?
    What XMRV assay were you tested with?
    Have you been tested with a generic reverse transcriptase activity assay?