Re: HI & Introduction

[Guest guest]

Sara,

Did you ever test hiv poz? Did you ever get a t-cell/viral load count?

paul

On Sun, 14 Nov 2004 13:09:15 -0800 (PST) Sara Elbrai <selbrai@...>

writes:

>

> Congratulations on using your brain and wading through

> all of the HIV/AIDS crap. The primary cause of death

> for those who are HIV+ is undoubtedly listening to

> MDs.

>

> Sara

[Guest guest]

Why would I have an HIV test? Sorry but I'm not that

stupid. Nor do I go to psychics and ask them when I

will die. If I were to have a positive HIV test or a

psycic death prediction I would simply ignore both.

But then I was trained to be a scientist and not to be

a victim. If I'm sick I will address my illness. If

I'm not then I won't worry about it. Being HIV+ has

exactly as much meaning as you choose to give it.

Tcell and viral load counts are almost completely

irrelvant as indicators of your health. You should

know this because it has been pointed out to you time

and again. My brother almost died because of the kind

of crap you are peddling. He now ignores his positive

status as well as tcell counts and other similar BS

and he is healthier than he has been in years. He

takes care to engage in activities that support his

immune system and that no longer involves slavish

devotion to the Merchants of Death.

--- J Purcell <freelightexpress@...> wrote:

>

>

> Sara,

>

> Did you ever test hiv poz? Did you ever get a

> t-cell/viral load count?

>

>

> paul

>

>

>

>

>

> On Sun, 14 Nov 2004 13:09:15 -0800 (PST) Sara Elbrai

> <selbrai@...>

> writes:

> >

> > Congratulations on using your brain and wading

> through

> > all of the HIV/AIDS crap. The primary cause of

> death

> > for those who are HIV+ is undoubtedly listening to

> > MDs.

> >

> > Sara

>

>

>

[Guest guest]

Hi Sara. It sounds like we have many similarities in our situations. There are

some crazy intelligent and well-informed people in this group, so I'll leave

them to the hard core information. I just wanted to say thanks for sharing

your story, and I hope the next meeting is informative and the next move is

clear. And you're right, I think those of us in our thirties with a

(relatively) swift diagnosis are pretty darn lucky. I also have to say a HUGE

congratulations on your weight loss. That's amazing. Way to go!

>

> Hi --

>

> I just joined this group, and wanted to share my background and ask for your

pointers for going forward. I'm Sara Brumfield, a 37 year old software engineer

in Austin, Tx. I have 2 lovely daughters and a super great husband. When I'm

not exhausted, I like volunteering, cooking, reading, and learning the play the

piano. I've just received a hyperaldosterone diagnosis.

>

> My story:

>

> About 7 years ago, after the birth of my first daughter, I started noticing my

blood pressure was often at " pre-hypertension " levels. Since I think of myself

as a " healthy " person, this was troubling to me. When I got an iPhone a couple

years later, I started tracking these readings in iBP so I could keep tabs on

them. What I saw was a slow but clear upward trend in my blood pressure

readings, particularly the systolic ones. This prompted me to lose weight -- I

went from ~196 to 136 pounds over the course of a year (with the help of Weight

Watchers). Shortly after I started that weight loss journey, I was diagnosed

with hyperthyroidism (Grave's Disease). I got that under control

(endicrinologist #1, not so great, and #2, pretty decent), lost the weight, and

was feeling pretty great for the first time since becoming a mom. (I had

figured the fatique and memory loss from the hyperthyroidism was just the " cost "

of being a working mom.) *However*, the blood pressure still hadn't gone down,

despite losing 60 pounds!

>

> My BP still wasn't high enough for treatment, and my hyperthyroidism was under

control (and hadn't gone into remission like I was hoping), so I got pregnant

with my 2nd child. (This was 5 years after the first, for timeline reference.)

Had child (induced about a month early because she wasn't growing enough, which

is probably not related, but who knows), got to stay home with her for 8 months.

During that time I did an annual physical with a (new) GP, and told him about

the blood pressure trends. He had me follow the DASH diet for about 6 weeks,

which I did pretty extremely (<1000 mg sodium most days) -- I found it extremely

hard to be moderate in my sodium intake. However, it " worked " , and my blood

pressure came down. At this point we had established a sodium as a cause of the

high blood pressure, however I had never been a heavy processed food eater, so I

was still a bit confused by this was the case at age 36 with very little heart

disease in my family.

>

> Since I was no longer pregnant, I was then was told I really should kill off

my thyroid with radioiodine treatment. I did that in January of this year.

After that, my endicrinologist's office informed me that my she was leaving for

maternity leave and not planning on returning. It's a big practice (This is the

Austin Diagnostic Clinic) so they made me a followup appointment with another

endocrinologist, Dr. Kavita Juneja. The thyroid part of that appointment was

boring, but at the end she asked that most important of questions " Do you have

any other health concerns? "

>

> I told her about the upward trending blood pressure, and showed her the pretty

graph on the iBP app, and explained about the DASH diet experiment and results.

You could see the gears turning in her head when she said " I can test you for

XXX, YYY, and ZZZ, all of which could cause sodium retention. " I wasn't very

optimistic we would find anything, but of course I said " yes. " I don't have all

the tests and results in front of me, but one of the results was high

aldosterone and low renin. A CT scan confirmed a growth/tumor on my adrenal

gland. I then did the 24 hour urine test and later the salt loading test, and

they led to a formal hyperaldosterone diagnosis (as of this morning). (This was

all done in less than 3 months, which based on the stories I've been reading is

really good!)

>

> I have an appointment on Monday to talk about options, but both my doctor and

I are leaning towards surgery to remove the tumor. Pointers to " questions I

should ask " or " things to think about " would be appreciated.

>

> Other symptoms I'm curious about:

> 1) Right before my period, my ability to sleep gets much worse -- I

definitely get the " 2AM Cortisol " rush, and I sometimes (this winter) get a sore

throat right before my period, theoretically caused by lowered progesterone (See

here:

http://doctorstevenpark.com/is-your-throat-sore-just-before-your-periods).

> 2) When I was in labor with my second child, my blood pressure shot up

substantially. No one had any idea why, although that's obviously a lot of

physical stress.

> 3) When my first daughter was in utero, the ultrasound showed a growth on her

adrenal. By the time she was born, an ultrasound on her person did not show it.

Very suspicious!

>

> Thanks for being here,

>

> Sara

>

[Guest guest]

Hi Sara (and Ann Marie) I know absoluely nothing about mitochondrial disease and

have no time tonight to look it up. I would suggest you search the NIH website

and see if they are doing any researching on that subject. I suspect they might

be from what little I skimmed of your story.

I am currently enrolled and partway through a study and have a team meeting

tomorrow and if the meeting goes as planned will likely discuss you question 3

in some detail as I have a 28 yo daughter that is or maybe in the early stage of

looking for preg answers (the first ended real early due to problems but I don't

know the detail)

I don't have a printer here but will note that question and try to work it in.

I now have 2 inches of paper to screen for my meeting in 12 hours so I'll where

it goes. If I don't get back I'm here all next week and give me a pop. My

schedule gets a little lighter after tuesday if I can find a doctor to talk

with!

..... Currently at NIH - Protocol 00-CH-0160

>

> Hi --

>

> I just joined this group, and wanted to share my background and ask for your

pointers for going forward. I'm Sara Brumfield, a 37 year old software engineer

in Austin, Tx. I have 2 lovely daughters and a super great husband. When I'm

not exhausted, I like volunteering, cooking, reading, and learning the play the

piano. I've just received a hyperaldosterone diagnosis.

>

> My story:

>

> About 7 years ago, after the birth of my first daughter, I started noticing my

blood pressure was often at " pre-hypertension " levels. Since I think of myself

as a " healthy " person, this was troubling to me. When I got an iPhone a couple

years later, I started tracking these readings in iBP so I could keep tabs on

them. What I saw was a slow but clear upward trend in my blood pressure

readings, particularly the systolic ones. This prompted me to lose weight -- I

went from ~196 to 136 pounds over the course of a year (with the help of Weight

Watchers). Shortly after I started that weight loss journey, I was diagnosed

with hyperthyroidism (Grave's Disease). I got that under control

(endicrinologist #1, not so great, and #2, pretty decent), lost the weight, and

was feeling pretty great for the first time since becoming a mom. (I had

figured the fatique and memory loss from the hyperthyroidism was just the " cost "

of being a working mom.) *However*, the blood pressure still hadn't gone down,

despite losing 60 pounds!

>

> My BP still wasn't high enough for treatment, and my hyperthyroidism was under

control (and hadn't gone into remission like I was hoping), so I got pregnant

with my 2nd child. (This was 5 years after the first, for timeline reference.)

Had child (induced about a month early because she wasn't growing enough, which

is probably not related, but who knows), got to stay home with her for 8 months.

During that time I did an annual physical with a (new) GP, and told him about

the blood pressure trends. He had me follow the DASH diet for about 6 weeks,

which I did pretty extremely (<1000 mg sodium most days) -- I found it extremely

hard to be moderate in my sodium intake. However, it " worked " , and my blood

pressure came down. At this point we had established a sodium as a cause of the

high blood pressure, however I had never been a heavy processed food eater, so I

was still a bit confused by this was the case at age 36 with very little heart

disease in my family.

>

> Since I was no longer pregnant, I was then was told I really should kill off

my thyroid with radioiodine treatment. I did that in January of this year.

After that, my endicrinologist's office informed me that my she was leaving for

maternity leave and not planning on returning. It's a big practice (This is the

Austin Diagnostic Clinic) so they made me a followup appointment with another

endocrinologist, Dr. Kavita Juneja. The thyroid part of that appointment was

boring, but at the end she asked that most important of questions " Do you have

any other health concerns? "

>

> I told her about the upward trending blood pressure, and showed her the pretty

graph on the iBP app, and explained about the DASH diet experiment and results.

You could see the gears turning in her head when she said " I can test you for

XXX, YYY, and ZZZ, all of which could cause sodium retention. " I wasn't very

optimistic we would find anything, but of course I said " yes. " I don't have all

the tests and results in front of me, but one of the results was high

aldosterone and low renin. A CT scan confirmed a growth/tumor on my adrenal

gland. I then did the 24 hour urine test and later the salt loading test, and

they led to a formal hyperaldosterone diagnosis (as of this morning). (This was

all done in less than 3 months, which based on the stories I've been reading is

really good!)

>

> I have an appointment on Monday to talk about options, but both my doctor and

I are leaning towards surgery to remove the tumor. Pointers to " questions I

should ask " or " things to think about " would be appreciated.

>

> Other symptoms I'm curious about:

> 1) Right before my period, my ability to sleep gets much worse -- I

definitely get the " 2AM Cortisol " rush, and I sometimes (this winter) get a sore

throat right before my period, theoretically caused by lowered progesterone (See

here:

http://doctorstevenpark.com/is-your-throat-sore-just-before-your-periods).

> 2) When I was in labor with my second child, my blood pressure shot up

substantially. No one had any idea why, although that's obviously a lot of

physical stress.

> 3) When my first daughter was in utero, the ultrasound showed a growth on her

adrenal. By the time she was born, an ultrasound on her person did not show it.

Very suspicious!

>

> Thanks for being here,

>

> Sara

>

[Guest guest]

Was waiting for Dr Grim to respond to this. He may still sometimes takes a few

days.

His advice is to try DASHING and if that doesn't work then add spironolactone.

If this doesn't work then first have AVS and if AVS shows only one side is

making to much Aldo then have surgery.

Some will say if under 40 can skip AVS. This is something you would have to take

the chance that they are right and if under 40 only one side is making to much

Aldo but over 40 changes this.

Ultrasound not a goog way to test for growth on adrenal gland.

>

> Hi --

>

> I just joined this group, and wanted to share my background and ask for your

pointers for going forward. I'm Sara Brumfield, a 37 year old software engineer

in Austin, Tx. I have 2 lovely daughters and a super great husband. When I'm

not exhausted, I like volunteering, cooking, reading, and learning the play the

piano. I've just received a hyperaldosterone diagnosis.

>

> My story:

>

> About 7 years ago, after the birth of my first daughter, I started noticing my

blood pressure was often at " pre-hypertension " levels. Since I think of myself

as a " healthy " person, this was troubling to me. When I got an iPhone a couple

years later, I started tracking these readings in iBP so I could keep tabs on

them. What I saw was a slow but clear upward trend in my blood pressure

readings, particularly the systolic ones. This prompted me to lose weight -- I

went from ~196 to 136 pounds over the course of a year (with the help of Weight

Watchers). Shortly after I started that weight loss journey, I was diagnosed

with hyperthyroidism (Grave's Disease). I got that under control

(endicrinologist #1, not so great, and #2, pretty decent), lost the weight, and

was feeling pretty great for the first time since becoming a mom. (I had

figured the fatique and memory loss from the hyperthyroidism was just the " cost "

of being a working mom.) *However*, the blood pressure still hadn't gone down,

despite losing 60 pounds!

>

> My BP still wasn't high enough for treatment, and my hyperthyroidism was under

control (and hadn't gone into remission like I was hoping), so I got pregnant

with my 2nd child. (This was 5 years after the first, for timeline reference.)

Had child (induced about a month early because she wasn't growing enough, which

is probably not related, but who knows), got to stay home with her for 8 months.

During that time I did an annual physical with a (new) GP, and told him about

the blood pressure trends. He had me follow the DASH diet for about 6 weeks,

which I did pretty extremely (<1000 mg sodium most days) -- I found it extremely

hard to be moderate in my sodium intake. However, it " worked " , and my blood

pressure came down. At this point we had established a sodium as a cause of the

high blood pressure, however I had never been a heavy processed food eater, so I

was still a bit confused by this was the case at age 36 with very little heart

disease in my family.

>

> Since I was no longer pregnant, I was then was told I really should kill off

my thyroid with radioiodine treatment. I did that in January of this year.

After that, my endicrinologist's office informed me that my she was leaving for

maternity leave and not planning on returning. It's a big practice (This is the

Austin Diagnostic Clinic) so they made me a followup appointment with another

endocrinologist, Dr. Kavita Juneja. The thyroid part of that appointment was

boring, but at the end she asked that most important of questions " Do you have

any other health concerns? "

>

> I told her about the upward trending blood pressure, and showed her the pretty

graph on the iBP app, and explained about the DASH diet experiment and results.

You could see the gears turning in her head when she said " I can test you for

XXX, YYY, and ZZZ, all of which could cause sodium retention. " I wasn't very

optimistic we would find anything, but of course I said " yes. " I don't have all

the tests and results in front of me, but one of the results was high

aldosterone and low renin. A CT scan confirmed a growth/tumor on my adrenal

gland. I then did the 24 hour urine test and later the salt loading test, and

they led to a formal hyperaldosterone diagnosis (as of this morning). (This was

all done in less than 3 months, which based on the stories I've been reading is

really good!)

>

> I have an appointment on Monday to talk about options, but both my doctor and

I are leaning towards surgery to remove the tumor. Pointers to " questions I

should ask " or " things to think about " would be appreciated.

>

> Other symptoms I'm curious about:

> 1) Right before my period, my ability to sleep gets much worse -- I

definitely get the " 2AM Cortisol " rush, and I sometimes (this winter) get a sore

throat right before my period, theoretically caused by lowered progesterone (See

here:

http://doctorstevenpark.com/is-your-throat-sore-just-before-your-periods).

> 2) When I was in labor with my second child, my blood pressure shot up

substantially. No one had any idea why, although that's obviously a lot of

physical stress.

> 3) When my first daughter was in utero, the ultrasound showed a growth on her

adrenal. By the time she was born, an ultrasound on her person did not show it.

Very suspicious!

>

> Thanks for being here,

>

> Sara

>

[Guest guest]

good for big bumps in fetus. but only big ones. or really big ones in adults. At least with current technology. One day every Dr office will have an ultrasound that the Dr. can use. CE Grim MDOn Apr 6, 2012, at 8:20 AM, Francis Bill SUSPECTED PA wrote:Ultrasound not a goog way to test for growth on adrenal gland.