cheryl4329

In a message dated 8/19/2004 1:53:41 AM Eastern Standard Time,
m.e.s.s-@sympatico.ca writes:


hello Ken,

my doctor had made plans for me to take a stress
test for my heart. i came in with very swollen feet
ankles, and legs which had been that way for at least
a week may be more. when the test day came he had
to cancel because of a emergency. I never had it.

I get chest pains that are sharp and go away in a
few seconds & sometimes for several minutes.
It seems to happen when I'm doing housework
an i get tired but keep going. I try to work on that
and the pain has gotten less. I wonder if it is angina.

On another occassion of swollen feet my doctor
gave me a diuretic. It helped whenever my feet
would swell. i pen pointed the time to monthly and
also if i have too much carbohydrates my body swells.

I plan to ask about that stress test again. tommorrow
i go in for a cholesterol test so i will write myself a
note to as about a stress test. if it has good results
then i want need the Contrasting heart ultrasound
will I? I don't know. My grandmother and grandfather
had heart trouble. My grandfather died in his early 30's
due to a heart attack.

Better days are Ahead.

Cheryl

mabreen

Hi, Ken.

Just found out I have very high levels of CMV.

Did you receive treatment for this or another CFIDS-related virus? If so,
what was it?


Thanks.

Mary B.

mabreen

In a message dated 8/18/2004 1:41:33 AM Eastern Standard Time,
robertke@comcast.net writes:

Bob,
I'm confused. If the virus is NOT active and I have antibodies and damage
from it, what good will taking the antiviral meds do me? Wouldn't the virus
have to be in an ACTIVE state to get zapped by the meds?

Thanks for your patience.
Mary

m.e.s.s-

HEllo Mary B:

No Mary: I have NEVER received any form of anti viral drug treatment
for VIRAL CFS: rather , I have concentrated on rebuilding the cell
wall membrane of the bodies individual cells with a vitamin supplement
and a product called EFAMOL. I useire package: the vit/m formula PLUS
the EFAMOL!

Efamol is the only clinically the****utic product in the marketplace
but is not available in the USA. It works in the body by rebuilding
the cell wall membranes. HEalthy cell wall membranes do not leak nor
do they readily admit virus, and since the virus MUST live within a
cell to replicate, shutting down that process gradually eliminates
most of it from the body over time (depending of age of onset, the
duration you have had the virus, and lifestyle changes one needs to
make; it can take bw**** 6 and 16 months to experience a dramatic
change in both the frequencey of the secondary symptoms and their
severity. it is NOT a cure; but it beats the HE** our of ANY other
treatment i have seen these past years.

Thousands of us here, in Ontario, have been using it since late 1988.
I started it December of 1989. By THE FATHER'S weekend day after
Desert Storm, i walked the local international runway three time
looking at the jets which were parked on display. Those jets had
played a role in the conflict of that war - then I watched the air
show which followed.

That air show was a 14 hour day from the time i woke till the time i
returned home. I did something that day i had NOT done since I became
a ME/PWC January 13, 1987. I paid for it for a few days afterwards
but i would never have been able to do such a thing from the time I
became ill with EBV in January of 1987.
If you go to <www.efamol.com>; you will find information where you can
order the product.

If would like some additional information, email me at the MAILTO below
and I will endeavour tutoring you on this vitamin mineral formulation
of which I have found NOTHING BETTER in the past 16 years.
FWIW: I have NO financial interest in Efamol what so ever!

Regards:
Ken (MESS) http://cfids-cab.org/mess mailto:m.e.s.s-@sympatico.ca
Yahoo Voice Conference: <ken_mess>

m.e.s.s-

Hello ALL:

I hate to break into a topic like this; however, some misconception
needs to be addressed.

The last two weeks of april in 1994 were inordinate in that my energy
spend daily over that two week period was inordinate and extremely
physical. I specifically recall last friday night and Saturday of April
and the Sunday of May.

Friday night, i moved steel tables and chairs - about 20 tables and
forty chairs - the configuration setting of the tables was changed from
a random card room to bazaar style layouts and the 40 odd chairs were
removed from the room and put into storage. A few were left out for the
ladies who would be working at the display booths the next day. After
finishing assisting with setting out the wares for the sale. i went
upstairs and assisted in making sandwiches to be sold in the tea room. I
finished at 2 am. At 7 am, I arose, showered, dressed, and presented
myself in the TEA ROOM at 8:30 to make the coffee to be sold in that
room. From 9:30AM till 3:30 M, I acted as busboy - clearing tables and
taking the dirty dishes to the dishwasher - and retrieving the clean
dishes back to the tea room. WHEN the activity had ended at 4 PM; I
then RESET all the tables back to their original positions and replaced
the chairs. NOT these were tubular steel chairs weighing some 30 -40
pounds each while the tables were considerably more heavy.

At 6 PM, that evening, I went to my girlfriends house where i camped for
the weekend. NO physical activity was restricted and i awoke with a
most satisfied grin that Sunday morning. After church, we had breakfast
and i walked along the beach for 4 hours. Approximately 6:15PM, I had a
mighty chest pain that just dropped me to the floor.
A subsequent thallium stress test (i only managed 2 min and 32 second on
the treadmill before my leg muscles seized and i vaulted off the
treadmill. The cardiologist concluded that there was probable a 62 %
chance that i had a blockage in the descending artery to the heart and
insisted (he overrode all my reasoning that this was incorrect) - and
insisted they run that damned catheter up my groin and into my heart to
do a roto route job - an angiogram.
As luck would have it, my guardian angel allowed me to break my left
shoulder on labour day - just 2.5 weeks prior to this test i didn't
want.

I rounded up some scientific journal articles which dealt with ME
patients presenting at ER with symptoms of a myocardial infraction
(heart attack). now the funny part is THIS: 24 hours AFTER admission to
the CCU ward, the cardiologists could not find any evidence of cardiac
abnormalities associated with the symptoms that led to the ME patients
admission into ICU~!

Fortunately I met a great cardiologist who accepted Published MEDICAL
RESEARCH in HIS field - and he conducted a SESTAMIBI SPECT SCAN of my 52
yr. old heart. The results showed NO Obstruction in ANY blood vessel
leading to or from the heart; no abnormal function in ANY of the hearts
valves; a perfect ejection fraction, and NO DAMAGE TO ANY PART OF THE
HEART WALL MUSCLE !!

So IF IN DOUBT: Have the Sestamibi spect scan of the heart done (one
still has to do 3 minutes on the treadmill (have the doc make
arrangements for a couple orderlies to place their hands on your hip and
back and hold you in position while all you have to do is pick up and
put down your feet as fast as possible for three. The sestamibi is a
stronger nuclear isotope and it gives off longer waves - which are
easier to pick up and do not require 10- 15 minutes on the treadmill.

CONCLUSION: Your HEAT is a MUSCLE: antidepressants cause cardiac
changes. As like any muscle, the heart will protest JUST like your leg
muscles do when you have overdone things - - pushed beyond your bodies
capabilities. The more you push beyond your daily restrictions, the more
prone to finding your heart gives signals that it DOTH PROTEST at being
OVERWORKED - as do your leg muscles. IT IS A STRONG WARNING !
Do get the best evaluation of your heart muscle when in doubt!

Thanks for your patience!

Regards:
Ken (MESS) http://cfids-cab.org/mess mailto:m.e.s.s-@sympatico.ca
Yahoo Voice Conference: <ken_mess>

m.e.s.s-

KathY:

I was tested here in Ontarion between 1986 and 1994.
Our Govt medical system does not do complet EBV testing nor Complet
CMV testing NOW - all they will report is IF you DO or DO NOT have
antigens to these viruses.

air to be filled out and returned. HYDE is VERY SELECTIVE in whom he
accepts due to the huge amount of time he spends working with a case
I beleive he only takes cases where there is a potential for litigation
against disability claims, as this is the only way he can recover his
costs due to the amount of time. Generallym, you will see him at least
two visits of 3 hours each - and possible more. He can only charge for
three office visits and that NO WAY covers his costs and thus he
operates
in the redink department.

There SHOULD be good physicans WHERE you live! See the good doc list
from Lydia at the National ME/FM Action Network - her number is in the
phone book - NEPEAN - area code 613.

I have a comment within your text!
Kathy Froese wrote:

If you don't EAT within an HOUR of ingesting the vitamin mineral
formulation with the efamol, you WILL experience stomach upset.

If you are taking NSAIDS - you will devlepe bleeding ulcers between
the 22 and 28th consecutive month of that medication!

You are NOT bleeding from the Efamol - it is caused by something ELSE!
Are you using ANY FORM of blood thinner?

--
Regards:
Ken (MESS) http://cfids-cab.org/mess
mailto:m.e.s.s-@sympatico.ca
Yahoo Voice Conference: <ken_mess>

kathryn

But Ken, you did get tested and showed positive to EBV?

Many people are trying to find out how to get GOOD testing
and haven't found the excellent doctor who so accurately
diagnosed you. I've received backchannel e-mails in
response to my previous post, asking for any information I
might find.

It's impossible for most of us in Canada to get the testing
we need. You were fortunate in finding a doctor and a
treatment that helped your illness, but many of us are left
with the diagnosis of "CFS" which means little when it
comes to getting the right treatment.

I've been diagnosed with CFS by at least 3 doctors but have
never been able to get the testing I need. I would have to
go to the U.S. and have considered doing so but haven't been
well enough do what's required.

I have been on the Efamol program, but I developed bleeding
underneath my skin (apparently from Efamol, yes, the true
Efamol - diagnosed by a ND/MD) and my gut couldn't tolerate
the B vitamins.

It's not a cure-all for all of us. How I wish that it
were!!!

Kathy F.


----- Original Message ----- >


SNIPPED

mayalucretia

Hi Ken,

I have to echo Kathy's sentiment that there are NO
good GPs or specialists where we live. I've been
through 3 GPs, 2 endocrinologists, 2 internal medicine
specialists, one neurologist - all of whom have
essentially abandoned me, and I was refused
consultation by a heart specialist because I'm a 30
year old female with an "essentially normal" stress
test. I've been left to fend for myself, spending
$1000's on naturopaths and alternative treatments not
covered by any plan in order to prop myself up to the
point where I can continue to work... and I'm running
out of money and strength.

I've spoken with many other locals who have been
ill/bedridden for years because of the same poor and
incomplete investigations/treatments of their chronic
illnesses. My only hope for remission/recovery is to
seek treatment out of province. I will be consulting
with Dr. Hyde mid-october. Hopefully he is everything
you make him out to be, and is able to prescribe
adequate treatment for what I believe to be the cause
of my ills - chronic infections.

Because if I don't get better and I am forced to quit
my job and go on welfare, it's game over. I will lose
everything I own. There will be no money for any sort
of treatment, and no hope of receiving it here.

Helena Kalomiris
http://mayalucretia.0catch.com

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What vitamin supplement did you use too? That you mentioned besides efamol.

Mary:

In Dr.Lerner's research he biopsied heart wall tissue of diagnosed CFS patients and found under the microscope that partially replicated CMV and/or EBV virus particles had disrupted the normal structure of the tissue, i,e., this was the cause of the observed thickening and stiffening of the heart wall and the cause of the heart failure (fatigue). In subsequent research Dr. Lerner found that treatment with the appropriate antiviral drug - Valcyte for CMV and Valtrex for EBV resulted in reversing a significant portion of this damage and a consequent substantial improvement in the patient***ercise performance and endurance.

The infection is active and spreading when the virus is in the bloodstream. The damage is done when the virus gets into body tissues, the heart and elsewhere and tries to replicate.

I would send you a copies of the research to read for yourself, but I've just suffered a hard disk failure and do not know yet whether I still have copies.

Bob Kessler