Kate - experience with the Medical Profession

[Guest guest]

In 2001 during after a CATSCAN I found out I was born with a rare

genetic morphism which affects the placement of internal organs, and

babies with this genetic make up usualy die young from heart

defects. My heart was un-affected but that's when I found out I

didn't have a spleen and thave a mis-shappened panceas. I was very

sick as a baby, and had exploratory surgery in 1954 when they flound

a floating kidney, and tried to fix that, but being 1954, there was

no such thing as plastic much less plastic tubing, so it got slung

next to my uterus. Consequently I was unable t have children becuase

the uterus couldn't expand with the kidney (that couldn't be shoved

around) next to it.

In 1975 I had adhesions grow from the back side of this 1954 scar

and loop 2 sections of intestine, which unbeleivably was mis-dx's in

the ER as 'hysterical pregnancy'.. The dummies didn't read the Xray's

right untill I has about 8 hrs to live. It was during this operation

that I suspect I got Lyme/Babs from the transfusion, as I fell ill

about 6 weeks later.

My mother was infected with pertussis in 1945, 3 years before I

was born, and was dx's with Sarcoidosis in 1949 afte never eally

getting over the whiooping cough.. When Prednisone burst on the

scene- she took it with gusto and died in 1976 of a lung hemorage.

Long story short... I had been around Dr.s already in one way or

another from early child hood. And I had watched my mother honor

them like gods... And I knew in the 60's that corticoid steroids were

something that was affecting her adversely. I started colledge out

to be a Medical Illustrator - but got side tracted, and graduated

with a certificate to teach.

SO I was already familiar with the medical profession (which was

much different then than now- and unbeleivably WORSE than it is now)

and autoimmune disease, steroids, supplements (my teeth were cut on

Adele ' nutritional book " BeWell " . And I knew something about

the body from college.

Even in 1975 I didn't think they had all the answers... I just

didn't think they were correct in my first autoimmune dx in 1978

(lupus) and somewhere in the 80's I just decided to take on the

responsibilty of my well being myself and the responsibilty that goes

with that..

I don't shun Drs. now.

But I do look at the relation ship as a paid for service, and a

professional relationship.

Your talking to the end product (me) of a 56 year relationship with

the medical profession (usually on the sh*t end of the stick).

I was 52 when I found out I had Lyme (and not late stage syphilis

like they suspected)

SO I have alot of experience dealing with that establishment, and

their employees.

Barb

>

> >   I'm way W_A_Y more like Tony than any of you know - just maybe a

> > little more articulate.  Neither Tony nor I EXPECT the medical

> > profession to heal us.

> > And the truth of it is that they don't expect to heal us, nor do

they

> > particularily even CARE.  

> > He took his health into his own hands.  SO did I-

> > long long before I met the ALTDoc., long before I knew I had Lyme

> > that now helps me with Lyme...

> > I have a long history of working with and against the theories of

> > autoimmunity - and supposed 'genetic defects'.

[Guest guest]

I have come to look at the medical profession that way too. I use

them for diagnostics. Sometimes I tell them the truth and sometimes I

don't. When I tell them the truth I'm matter of fact about it and I

don't care what they think. This winter I infused my small amouant of

IVIG too fast for my system, as I got caught up in a conversation

with another patient, and that night had significant chest pain,

which went on for weeks along with wheezing. I did research and saw

that since IVIG increases blood viscosity there is always a small

chance of pulmonary embolism causing those symptoms. I had done only

5 grams so it wsa pretty unlikely but I didn't want to walk around

with the slight possibility which could kill me . I went to my HMO

doc and I said, I have chronic lyme, I do IVIG in small amounts and I

had *this* reaction. He said who is giving you IVIG. I said, I'd

prefer not to give you the doctor's name. I also added, the reasoning

on this is that in chronic lyme it is actually autoimmune and the

IVIG can help combat that autoimmune reaction.

I don't really believe this of course, or perhaps I believe it in

part, but I also believe active infection spurs the molecular mimicry

response and that would go away if lyme was killed; but it made him

sigh in relief, smile etc, because I knew he accepted the party line

on " it's cured in a month " and there was no point to make him think I

was crazy--and I knew he regarded post-lyme syndrome as autoimmune

since that's the line he was fed, AND I knew he'd know IVIG is used

in autoimmune conditions. So I gave him what he needed. Then he

examined me, gave me a chest xray, rx'ed an echocardiogram, all was

fine, my symptoms from all his questions seemed unlikely to be p.e.

and we decided not to go further. In fact, it was my chest wall that

was mighty sore, so for all I know, part of my reactionw as getting

some good antibodies in that particular bottle that attacked some

slyme.

This is how I use them. I'm going to see him on Friday with, in tow,

my emails from Pam about babesia, and the study in which it is stated

to be epidemic in southeastern connecticut by late 90's, and request

a quest babesia test. I'll explain it all calmly. I'll tell him her

credentials. I doubt he'll refuse. But will I ask for any more help

than that? Not. AND, if it'sn egatie, I'll pay out of pocket at my

holistic doc's with Igenex. She has educated herself about lyme

because of me.

So I kind of divide them into two camps. ANd in the case of meds, I

ask for them from my holistic doc and I buy them in Canada. I show

her the research and we reason it out together. There are a few I've

avoided because she was worried about them and I trusted her.

(Candida drugs).

The problem is, usually the smartest people don't go into medicine.

They become molecular biologists or physicists--the real thinkers. Or

maybe Md PhD's and go into research. And, because its a lucrative

profession, the original motive (compassion, caring) is much less a

motive these days. SO really they're too often plumbers, or

repairmen. Nothing wrong with plumbers or repairmen, car mechanics

etc, except when it's life and death, you have a problem!

> >

> > >   I'm way W_A_Y more like Tony than any of you know - just

maybe a

> > > little more articulate.  Neither Tony nor I EXPECT the medical

> > > profession to heal us.

> > > And the truth of it is that they don't expect to heal us, nor

do

> they

> > > particularily even CARE.  

> > > He took his health into his own hands.  SO did I-

> > > long long before I met the ALTDoc., long before I knew I had

Lyme

> > > that now helps me with Lyme...

> > > I have a long history of working with and against the theories

of

> > > autoimmunity - and supposed 'genetic defects'.