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MR WRIGHT,
MY NAME IS RHONDA AND I HAVE HEP C AND AM CURRENTLY ON
RYBETRON AND INTERFERON. 10 DAYS AGO I HAD TO BE HOSPITALIZED
FOR BLOOD TRANSFUSIONS. I CERTAINLY WANT WHAT THIS TREATMENT
NARROWLY PROVIDES. BUT THE TREATMENT IS TURNING OUT TO BE VERY
MUCH LIKE THE ILLNESS ITSELF.
THE REASON I AM WRITING TO YOU, IT WAS INSISTED, BY MY
COUSIN MARK NICHOLS WHO HAS SPOKEN TO YOU AT LENGTH, TO
COMMUNICATE WITH YOU TO SEE IF YOU HAD ANY INPUT ON MY CURRENT
STATUS.
MY MOTHER DIED 15 MONTHS AGO FROM COMPLICATIONS OF LIVER
TRANSPLANT AS A RESULT OF HEP C/CIRRHOSIS. I WAS HER MAIN
CAREGIVER FOR 5 YRS. I WATCHED HER DIE IN A HORRIBLE SUFFERING
WAY. THE LAST YEAR OF HER LIFE, SHE WOULD CRY AND HOLD ME
SAYING "YOU TAKE SUCH WONDERFUL CARE OF ME, BUT WHO WILL
TAKE CARE OF YOU?"
SHE SAW THE ILLNESS IN ME BEFORE ANY DR OR EVEN MYSELF. IT
HAS BEEN DEDUCTED THAT I WAS INFECTED SOMEWHERE AROUND 1977-78
BY ONE OF TWO BLOOD TRANSFUSIONS DURING SURGERIES. FOR YEARS I
WAS TOLD I HAD THE ANTIBODIES BUT NOT THE ACTIVE ILLNESS. AND
I SHOWED NO OBVIOUS SYMPTOMS.
WHAT NO ONE ELSE SEEMED TO PUT TOGETHER UNTIL NOW IS ALL
THE OTHER DIAGNOSIS WERE REALLY THE HEP RARING ITS UGLY HEAD.
I'VE BEEN TOLD THAT I HAVE OSTEOPOROSIS, SJOUGRENS SYNDROME,
ANEMIA, AND DEGENERATIVE DIC DISEASE. MY EYES, EARS, NOSE AND
THROAT ARE SO DRY THAT I HAVE TO USE ARTIFICIAL MEANS TO KEEP
THEM FROM BLEEDING OR ITCHING. I CHOKE ON ALMOST EVERYTHING I
SWALLOW. SOMETIMES EVEN MY OWN BREATH MAKES ME CHOKE. I'VE HAD
2 ENDOSCOPIES AND NOTHING IS OBVIOUS.
SO ALL OF THIS IS TO SAY, IF YOU HAVE ANY INFORMATION THAT
MAY HELP MY DOCTORS AND ME, I COULDN'T THANK YOU MORE.
I WANT TO BE AROUND TO SEE MY DAUGHTER MARRY AND SEE MY
FIRST GRANDCHILD.
THANK YOU FOR ANY HELP POSSIBLE.
Hi Rhonda:
It is difficult to help doctors, but I can help you.
I have had a lot of trouble attempting to get doctors to do
what I say, that is when they are the run of the mill doctor's
that seem to occupy most of the doctors office space. On the
other hand, many doctors are telling me that it is people like
me that change medicine.
I need someone who can receive frozen peptides and take
them to you and pour them into your mouth.
Your doctor's malpractice insurance prohibits
him from having anything to do with this. Also I would like to
know what your albumin count is.
In Good Health
Lloyd
THANK YOU LLOYD FOR RESPONDING SO QUICKLY TO MY EMAIL.
RE: YOUR INQUIRY OF MY ALBUMIN - FRANKLY, I DON'T KNOW. YOU
SEE I AM ONE OF THOSE UNUSUAL TYPES. MY ENZYMES ARE ACTUALLY
HIGH NORMAL. THEY REALLY HAVEN'T BEEN HIGH EXCEPT THE MONTH MY
MOM DIED. THAT'S WHAT REALLY CAUSED ALL THE CONTROVERSY. LONG
AGO, I THOUGHT IF THE ENZYMES ARE NORMAL THEN I'M NOT SICK.
WHICH IS THE UNFORTUNATE BELIEF OF A LOT OF HEP C VICTIMS.
NOW, I KNOW THAT JUST BECAUSE THE ENZYMES MAY BE NORMAL THE
LIVER CAN STILL BE MALFUNCTIONING. ANYWAY, YOU KNOW ALL OF
THIS I AM SURE.
BY THE WAY, I SHARE YOUR FEELINGS RE: DOCTORS. I'VE BEEN
DEGRADED, HUMILIATED, AND CHEWED OUT BY THE BEST OF THEM. NOW,
THANK GOD, MY PRIMARY IS LIKE ME.
HE WANTS ME TO HELP EDUCATE HIM ON THE DISEASE. IN THE
BEGINNING HE ASKED ME IF I PREFERRED SOMEONE MORE EXPERIENCED
IN THE HEP C FIELD. I TOLD HIM THAT I WOULD RATHER HAVE HIM
THAN THE MOST EXPERIENCED HEPATOLOGIST IN MEMPHIS, BECAUSE HE
"listens" TO ME AND RESEARCHES AND DISCUSSES NEW
TREATMENTS AND RESULTS WITH ME AND ASKS MY OPINION. THAT IS
MORE COMFORTING TO ME THAN ANYTHING THE HEPATOLOGIST WILL DO.
CONSIDERING THE LAST FEW TIMES HE SENT ME TO THE HEPATOLOGIST
THEY SAID I WASN'T SICK, OF COURSE. I'VE KNOWN THIS
HEPATALOGIST FOR YEARS, SINCE I WAS A YOUNG GIRL. IT SCARED ME
TO THINK HE WOULD RATHER SEE ME DIE OR TRANSPLANTED THAN TREAT
ME.
PLEASE EXCUSE MY LONG-WINDED RESPONSE. IT SURE HELPS TO
VENT ALL OF THIS. I APPRECIATE IT.
THE NEXT TIME I GET MY LAB RESULTS I WILL INQUIRE OF MY
LIVER FUNCTIONS AND LET YOU KNOW.
THANKS AGAIN, MR. WRIGHT.
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