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Dr. Grim,

Yesterday, I left a message for Dr. Carey to call me but so far he

hasn't, then tonight I got an e-mail from him. He told me to go back

on Spiro and said that he would be happy to reevaluate me. I e-

mailed back and asked about the adrenal vein sampling and he replied

that it wasn't medically indicated because of the results of the

saline suppression test. He also said that sometimes patients with

resist hypertension require spiro to normalize their bp even though

they do not have primary aldosteronism. I have already started back

on spiro. I am so angry, I know that you think he is great but in my

opinion, I could care less how many papers he has written, I think he

has slipped a few notches. From the very beginning, he never wanted

to acknowledge an adrenal problem and started looking for parathyroid

tumors. Has he forgotten about the " slightly elevated " 5-HIAA. Now

he isn't saying anything about the parathyroid tumor. I am so angry,

I have wasted 9 months on this guy thinking I was finally going to

get help. I will get my records off to this dr at Hopkins in a

couple of days. I left a message for my nephrologist to call me

tomorrow, he is the one who put me on Spiro. I want to see if he

thinks a neph or endo would be best. My feeling about endos is that

they have too many endo problems to look for and don't want to see

what is right in front of their eyes. I have also found an endo on

the Hormone.org web site who is near me and lists adrenal disorders

as one of his areas of interest. I may try him, too. I live in the

Wash DC area and it is rediculous that I cannot find a dr who knows

anything about this. Years ago, I went to the head guy at GW Univ

and he said that I have already had all of the tests he would

recommend and didn't say he wanted to see me again. The endo I was

already seeing was also teaching at town Univ and he never did

anything except treat me for hypertension even thought my neph had

already put me on Spiro. Traffic is too bad to get to NIH and that is

why I decided to go to Hopkins. I am about 30+ miles west of DC and

can go north then east to Baltimore and avoid the real traffic mess.

Do you agree that an endo should accept the tests done by previous

drs? Everyone I have seen so far starts out by saying " I don't think

that is what you have " and starts the testing process all over

again. I wouldn't object so much but when I have to go off of the

only two drugs that help my bp, it isn't good for my heart.

Fran

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In a message dated 5/3/06 9:51:06 PM, frand.2@... writes:

Do you agree that an . should accept the tests done by previous

drs?  Everyone I have seen so far starts out by saying "I don't think

that is what you have" and starts the testing process all over

again.  I wouldn't object so much but when I have to go off of the

only two drugs that help my bp, it isn't good for my heart.

Fran

The saline suppression test suggests you may only have individual hyperaldosteronism-see my article and take it to who ever you see.

Get all your lab results. If BP is controlled on spiro or other drugs without side effects I do not do AVS as it has some risk and can cost up to $17000 as we have seen.

What you need is someone who is an expert in difficult HTN and has followed a number of people like you for say 10+ years. At Hopkins I would recommend you try to see Dr. R. at Hopkins-he may be retired.

He published this classical article in 1972.

RP, Masi AT, Richter ED.

Adrenal cortical adenomas and hypertension. A clinical pathologic analysis of 690 cases with matched controls and a review of the literature.

Medicine (Baltimore). 1972 May;51(3):211-25. No abstract available.

PMID: 5021770 [PubMed - indexed for MEDLINE]

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Dr. Grim,

Spiro (200 mg) does NOT control my BP unless you call 150+ systolic

controlled. On Spiro, the diastolic is in the 60s & 70s. My problem

that I cannot live with is the pain in my feet and the sweating which

is horrible and wakes me up several times a night. Dr. Carey said

that was caused by a tumor and has something to do with seratonin. I

have made an appointment with a Dr. Salvatori at Hopkins. They gave

me the names of 3 drs there who treat adrenal disorders, Drs Ball,

salvatori and Wand. I can't imagine that any doctor would read a

paper brought to him by a patient especially someone at Hopkins.

These drs have huge egos at least that is what I found with Dr.

Carey. Farrah tried it and it didn't sound to me like he even looked

at it or intended to. I have found that Vitamin B5 1000 mg per day

help the pain in my feet. I can't take many drugs because they

aggrevate the pain in my feet and it is already painfull for me to do

anything like shopping for groceries and cooking. I tried zoloft

once and I think it helped the hot flashes but caused a horrible

burning pain in my feet. I have also made an appointment with a Dr.

Harvey stein in McLean, VA who supposedly knows something about

adrenal disorders. I am about to give up especially if they want to

start over again. I have to fax my test results to Hopkins so the dr

can review them before my appt. That will cost me about $20. I have

been reading that high aldosterone levels can be caused by diuretic

abuse. Is it possible that is what caused mine if it isn't primary

aldosteronism? Do beta blockers do anything to help high

aldosterone? I am taking Normodyne 200mg 3X a day and when I had to

go off of it for tests, I noticed my bp went up for about 3 days then

went down but then it was time to reduce the dose again and the same

thing happened. I am thinking about going off of it for a while and

see what happens. At the time, I was taking two maxzide a day and I

think that makes my bp go up, too. It seems like I cannot tolerate

diuretics. I am starting to think my problem is just too many drugs

but then I remember the elevated 5-HIAA and the nodule on my left

adrenal.

Fran

>

>

> In a message dated 5/3/06 9:51:06 PM, frand.2@... writes:

>

>

> > Do you agree that an . should accept the tests done by previous

> > drs?  Everyone I have seen so far starts out by saying " I don't

think

> > that is what you have " and starts the testing process all over

> > again.  I wouldn't object so much but when I have to go off of the

> > only two drugs that help my bp, it isn't good for my heart.

> >

> > Fran

> >

> >

>

> The saline suppression test suggests you may only have individual

> hyperaldosteronism-see my article and take it to who ever you see.

>

>

> Get all your lab results. If BP is controlled on spiro or other

drugs

> without side effects I do not do AVS as it has some risk and can

cost up to

> $17000 as we have seen.

>

> What you need is someone who is an expert in difficult HTN and has

followed a

> number of people like you for say 10+ years. At Hopkins I would

recommend

> you try to see Dr. R. at Hopkins-he may be

retired.

>

>

> He published this classical article in 1972.

>

> RP, Masi AT, Richter ED.

>

>

> Adrenal cortical adenomas and hypertension. A clinical pathologic

analysis of

> 690 cases with matched controls and a review of the literature.

> Medicine (Baltimore). 1972 May;51(3):211-25. No abstract available.

> PMID: 5021770 [PubMed - indexed for MEDLINE]

>

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In a message dated 5/6/06 3:30:24 PM, frand.2@... writes:

When my primary first put me on BP meds he gave me HCTZ and my K went

down.  That was 18 years ago and I don't have any results.  He gave

me K tabs but they didn't work so he switched me to maxzide.  That

seemed to do OK until 6 years ago when they put me on HCTZ because I

was taking Diovan and my K went down to 3.5 but NA was 136.  A couple

of weeks after that, I got a new primary and when I showed him those

test results, he said they were fine because they were within normal

limits.  About 8 months later, in Dec 2000, I started having PVCs, my

dr did an ekg and said they were normal and I probably just didn't

notice them before.  That is when I started gaining a lot of weight,

10 lbs within 10 days.  Shortly after that, I decided I didn't eat

enough K even though I ate a banana every day.  I added OJ, cataloupe

and 5-6 dried apricots a day.and the PVCs stopped.  When I went to a

neph and he did tests in Oct 02, my K was 3.5 and NA was 137 and my

bp was around 180/90.  I had been on Maxide for over 2 years.

Test results from Jan 06 -- Aldo 20   Renin .9  My aldo was 11 in Mar

of last year. 

This is primary aldo if I have ever heard of it. Low K exacerbated by diureitcs is classic. Both renin an aldo suggest PA. See my article and take it to your primary and show him all your past lab problems.

May your pressure be low!

CE Grim, BS(Chem/Math), MS(Biochem), MD.

Board Certified in Internal Medicine, Geriatrics and Hypertension

Former Epidemiologic Intelligence Services Officer (Lt. Comdr.), CDC

Specializing in Difficult to Manage High Blood Pressure

Clinical Professor of Medicine, Medical College of Wisconsin

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  • 1 year later...
Guest guest

OOOOH thank you for the heads up ! I have been laying awake at

night wondering what's coming next!!!

I'm thrilled that you are coming to Pittsburgh in October. Can't wait

to meet you.

>

> Hello all

>

> Just a little heads up to my friends - and especially, non-friends -

> that I am working on THREE new stories - all of them bombshells.

>

> I expect the first one to break early this week - It involves new

> documents received through FOIA that are nothing short of shocking - and

> I am not shocked by much anymore. I hope the AJC will run it.

>

> The second one might break by the end of the week, or early the

> following week. When it is announced, it will keep certain government

> folks up nights, worrying, if not speed-dialing their attorneys.

>

> Finally, the third piece of news might be a few weeks away, but it is

> also rather nuclear. It has to do with the many more Hannah Poling

> carbon copies out there - and the impact this will have on future court

> cases, not to mention public opinion.

>

>

> As Hillary Clinton likes to say, now is when the fun part begins.

>

> Have a great weekend.

>

> DK

>

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Guest guest

Love those bombshells. :)

>

> Hello all

>

> Just a little heads up to my friends - and especially, non-friends -

> that I am working on THREE new stories - all of them bombshells.

>

> I expect the first one to break early this week - It involves new

> documents received through FOIA that are nothing short of shocking -

and

> I am not shocked by much anymore. I hope the AJC will run it.

>

> The second one might break by the end of the week, or early the

> following week. When it is announced, it will keep certain

government

> folks up nights, worrying, if not speed-dialing their attorneys.

>

> Finally, the third piece of news might be a few weeks away, but it

is

> also rather nuclear. It has to do with the many more Hannah Poling

> carbon copies out there - and the impact this will have on future

court

> cases, not to mention public opinion.

>

>

> As Hillary Clinton likes to say, now is when the fun part begins.

>

> Have a great weekend.

>

> DK

>

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Guest guest

Ooh, I simply can't wait!!! Thanks for everything!

>

> Hello all

>

> Just a little heads up to my friends - and especially, non-friends -

> that I am working on THREE new stories - all of them bombshells.

>

> I expect the first one to break early this week - It involves new

> documents received through FOIA that are nothing short of shocking -

and

> I am not shocked by much anymore. I hope the AJC will run it.

>

> The second one might break by the end of the week, or early the

> following week. When it is announced, it will keep certain government

> folks up nights, worrying, if not speed-dialing their attorneys.

>

> Finally, the third piece of news might be a few weeks away, but it is

> also rather nuclear. It has to do with the many more Hannah Poling

> carbon copies out there - and the impact this will have on future

court

> cases, not to mention public opinion.

>

>

> As Hillary Clinton likes to say, now is when the fun part begins.

>

> Have a great weekend.

>

> DK

>

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Guest guest

Thanks!

I am looking forward to it, too.

By the way, is it true that you invited Dr Minshew to debate

me in Pittsburgh, and she

REFUSED?

Isn’t she the one who was “taking the gloves

off?” What happened? Anyone know?

Why does she refuse to share a stage with me, or anyone else

for that matter, and discuss these serious issues like a grownup, instead of issuing

forth with infantile boxing methaphors from the safety of her office, I wonder?

I am not afraid to debate this fair and square, so why is

Dr. Minshew? Is this the type of medical public figure that we are supposed to

respect and revere? Why did Offit refuse to appear on Larry King? Why did

the CDC refuse? If I am so wrong, so ignorant, surely they could make mincemeat

out of me, so why don’t they?

Courage is not a widely held shining quality of the medical

profession, I fear, (with some very obvious exceptions).

DK

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Oh, DK, you make me so happy sometimes...

-------------- Original message -------------- From: " Kirby" <dkirby@...>

Hello all

Just a little heads up to my friends – and especially, non-friends – that I am working on THREE new stories – all of them bombshells.

I expect the first one to break early this week – It involves new documents received through FOIA that are nothing short of shocking – and I am not shocked by much anymore. I hope the AJC will run it.

The second one might break by the end of the week, or early the following week. When it is announced, it will keep certain government folks up nights, worrying, if not speed-dialing their attorneys.

Finally, the third piece of news might be a few weeks away, but it is also rather nuclear. It has to do with the many more Hannah Poling carbon copies out there – and the impact this will have on future court cases, not to mention public opinion.

As Hillary Clinton likes to say, now is when the fun part begins.

Have a great weekend.

DK

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Guest guest

Sweeeeet! Wow, thanks for the heads up .

Go Jayhawks,

On Apr 5, 2008, at 10:41 AM, Kirby wrote:

> Hello all

>

>  

>

> Just a little heads up to my friends – and especially, non-friends –

> that I am working on THREE new stories – all of them bombshells.

>

>  

>

> I expect the first one to break early this week – It involves new

> documents received through FOIA that are nothing short of shocking –

> and I am not shocked by much anymore. I hope the AJC will run it.

>

>  

>

> The second one might break by the end of the week, or early the

> following week. When it is announced, it will keep certain government

> folks up nights, worrying, if not speed-dialing their attorneys.

>

>  

>

> Finally, the third piece of news might be a few weeks away, but it is

> also rather nuclear. It has to do with the many more Hannah Poling

> carbon copies out there – and the impact this will have on future

> court cases, not to mention public opinion.

>

>  

>

>  

>

> As Hillary Clinton likes to say, now is when the fun part begins.

>

>  

>

> Have a great weekend.

>

>  

>

> DK

>

>  

>

>  

>

>  

>

>

Bondank

www.goodbrains.com

913-908-8315

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Guest guest

Don't know what she could be so afraid of.

Have you heard about her latest speaking engagement coming up on monday?

Monday, April 7, 2008 at 7 pm

Penn Brewery

800 Vinial St

Pittsburgh, PA 15212

Minshew, MD, Professor of Psychiatry and Neurology at the

University of Pittsburgh School of Medicine

Autism: A Compelling Neuroscience Window on Brain Circuitry & Human

Function

The rate of autism is on the rise, with one occurrence per 150 births

overall, and one per 94 in baby boys. It is a clear and present risk

in the minds of all those contemplating childbirth and of those with

children under the age of 4. Cases of autism whose onset appears to

follow the administration of vaccines has caused some parents to avoid

vaccinating their children, putting them at risk of developing

devastating illnesses that are preventable. But what is a concerned

parent to believe?

Minshew, MD, is a Professor of Psychiatry and Neurology at the

University of Pittsburgh School of Medicine, and Director of one of

the National Institute of Child Health and Human Development's

(NICHD's) Autism Centers of Excellence, where she is investigating the

neurobiologic and genetic basis of autism. She will talk briefly about

the basis for the expansion in recognition rate of autism, and show

that co-occurrence with vaccination is a very poor basis for

considering vaccination to be a cause of autism. Evidence of

accelerated growth of the brain in children with autism at various

points in development is just one piece in the neurobiological puzzle

that might lead to a better understanding of autism. Furthermore, Dr.

Minshew will explain that autism is a syndrome, not a disorder.

Please join us for an enlightening discussion of this traumatic health

problem.

We hope to see you there!

Tim Palucka and Stabryla, co-organizers

Café Scientifique Pittsburgh

Tim Palucka and Stabryla, co-organizers

Cafe Scientifique Pittsburgh www.cafescipgh.org

>

> Thanks!

>

> I am looking forward to it, too.

>

> By the way, is it true that you invited Dr Minshew to debate me in

> Pittsburgh, and she REFUSED?

>

> Isn't she the one who was " taking the gloves off? " What happened? Anyone

> know?

>

> Why does she refuse to share a stage with me, or anyone else for that

> matter, and discuss these serious issues like a grownup, instead of

> issuing forth with infantile boxing methaphors from the safety of her

> office, I wonder?

>

> I am not afraid to debate this fair and square, so why is Dr. Minshew?

> Is this the type of medical public figure that we are supposed to

> respect and revere? Why did Offit refuse to appear on Larry King?

> Why did the CDC refuse? If I am so wrong, so ignorant, surely they could

> make mincemeat out of me, so why don't they?

>

> Courage is not a widely held shining quality of the medical profession,

> I fear, (with some very obvious exceptions).

>

> DK

>

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Guest guest

Maybe should show up there with some well

phrased questions.

HAHA!!!!!

--- angndon1994 <angslists@...> wrote:

> Don't know what she could be so afraid of.

> Have you heard about her latest speaking engagement

> coming up on monday?

>

>

>

>

> Monday, April 7, 2008 at 7 pm

> Penn Brewery

> 800 Vinial St

> Pittsburgh, PA 15212

>

> Minshew, MD, Professor of Psychiatry and

> Neurology at the

> University of Pittsburgh School of Medicine

>

> Autism: A Compelling Neuroscience Window on Brain

> Circuitry & Human

> Function

>

> The rate of autism is on the rise, with one

> occurrence per 150 births

> overall, and one per 94 in baby boys. It is a clear

> and present risk

> in the minds of all those contemplating childbirth

> and of those with

> children under the age of 4. Cases of autism whose

> onset appears to

> follow the administration of vaccines has caused

> some parents to avoid

> vaccinating their children, putting them at risk of

> developing

> devastating illnesses that are preventable. But what

> is a concerned

> parent to believe?

>

> Minshew, MD, is a Professor of Psychiatry and

> Neurology at the

> University of Pittsburgh School of Medicine, and

> Director of one of

> the National Institute of Child Health and Human

> Development's

> (NICHD's) Autism Centers of Excellence, where she is

> investigating the

> neurobiologic and genetic basis of autism. She will

> talk briefly about

> the basis for the expansion in recognition rate of

> autism, and show

> that co-occurrence with vaccination is a very poor

> basis for

> considering vaccination to be a cause of autism.

> Evidence of

> accelerated growth of the brain in children with

> autism at various

> points in development is just one piece in the

> neurobiological puzzle

> that might lead to a better understanding of autism.

> Furthermore, Dr.

> Minshew will explain that autism is a syndrome, not

> a disorder.

>

> Please join us for an enlightening discussion of

> this traumatic health

> problem.

>

> We hope to see you there!

>

> Tim Palucka and Stabryla, co-organizers

>

> Café Scientifique Pittsburgh

>

> Tim Palucka and Stabryla, co-organizers

>

> Cafe Scientifique Pittsburgh www.cafescipgh.org

>

>

>

>

>

>

>

>

> >

> > Thanks!

> >

> > I am looking forward to it, too.

> >

> > By the way, is it true that you invited Dr Minshew

> to debate me in

> > Pittsburgh, and she REFUSED?

> >

> > Isn't she the one who was " taking the gloves off? "

> What happened? Anyone

> > know?

> >

> > Why does she refuse to share a stage with me, or

> anyone else for that

> > matter, and discuss these serious issues like a

> grownup, instead of

> > issuing forth with infantile boxing methaphors

> from the safety of her

> > office, I wonder?

> >

> > I am not afraid to debate this fair and square, so

> why is Dr. Minshew?

> > Is this the type of medical public figure that we

> are supposed to

> > respect and revere? Why did Offit refuse to

> appear on Larry King?

> > Why did the CDC refuse? If I am so wrong, so

> ignorant, surely they could

> > make mincemeat out of me, so why don't they?

> >

> > Courage is not a widely held shining quality of

> the medical profession,

> > I fear, (with some very obvious exceptions).

> >

> > DK

> >

>

>

>

________________________________________________________________________________\

____

You rock. That's why Blockbuster's offering you one month of Blockbuster Total

Access, No Cost.

http://tc.deals./tc/blockbuster/text5.com

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Guest guest

--

I asked her many moons ago, and she refused. I can ask her again,

because I'd take a second mortgage out on my house to pay for THAT,

but she will NOT DO IT. Her reason? She thinks it's too much

negativity for the parents. (HUH?)

If you want, I will put out a public invitation (call her out) for her

to actually take those gloves off and show up at our conference and

debate you. I'm telling you, she won't do it.

(By the way, she hates me.) We used to be friends. Had lunch. And

then every time I sent something biomedical out on my listserv, she

had something to say about it. Tried to get me to form a

" professional advisory committee " on AutismLink. She thinks parents

are too stupid to understand the science. If you want to see those

emails, I will be oh so happy to post them.

I will never have a scientific advisory committee for this reason -- I

won't be stifled.

Waeltermann.

>

> Thanks!

>

> I am looking forward to it, too.

>

> By the way, is it true that you invited Dr Minshew to debate me in

> Pittsburgh, and she REFUSED?

>

> Isn't she the one who was " taking the gloves off? " What happened? Anyone

> know?

>

> Why does she refuse to share a stage with me, or anyone else for that

> matter, and discuss these serious issues like a grownup, instead of

> issuing forth with infantile boxing methaphors from the safety of her

> office, I wonder?

>

> I am not afraid to debate this fair and square, so why is Dr. Minshew?

> Is this the type of medical public figure that we are supposed to

> respect and revere? Why did Offit refuse to appear on Larry King?

> Why did the CDC refuse? If I am so wrong, so ignorant, surely they could

> make mincemeat out of me, so why don't they?

>

> Courage is not a widely held shining quality of the medical profession,

> I fear, (with some very obvious exceptions).

>

> DK

>

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Guest guest

Tell you what , I'll pay to put your butt on a plane and come

down here next week for the " brew haha " at the brewery. I'll buy you

beers all night until you can't see straight anymore.

Just show up.

-- In EOHarm , " Kirby " <dkirby@...> wrote:

>

> Thanks!

>

> I am looking forward to it, too.

>

> By the way, is it true that you invited Dr Minshew to debate me in

> Pittsburgh, and she REFUSED?

>

> Isn't she the one who was " taking the gloves off? " What happened? Anyone

> know?

>

> Why does she refuse to share a stage with me, or anyone else for that

> matter, and discuss these serious issues like a grownup, instead of

> issuing forth with infantile boxing methaphors from the safety of her

> office, I wonder?

>

> I am not afraid to debate this fair and square, so why is Dr. Minshew?

> Is this the type of medical public figure that we are supposed to

> respect and revere? Why did Offit refuse to appear on Larry King?

> Why did the CDC refuse? If I am so wrong, so ignorant, surely they could

> make mincemeat out of me, so why don't they?

>

> Courage is not a widely held shining quality of the medical profession,

> I fear, (with some very obvious exceptions).

>

> DK

>

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Guest guest

, you are truly a hero!

R

>

> Hello all

>

> Just a little heads up to my friends - and especially, non-friends -

> that I am working on THREE new stories - all of them bombshells.

>

> I expect the first one to break early this week - It involves new

> documents received through FOIA that are nothing short of shocking -

and

> I am not shocked by much anymore. I hope the AJC will run it.

>

> The second one might break by the end of the week, or early the

> following week. When it is announced, it will keep certain

government

> folks up nights, worrying, if not speed-dialing their attorneys.

>

> Finally, the third piece of news might be a few weeks away, but it

is

> also rather nuclear. It has to do with the many more Hannah Poling

> carbon copies out there - and the impact this will have on future

court

> cases, not to mention public opinion.

>

>

> As Hillary Clinton likes to say, now is when the fun part begins.

>

> Have a great weekend.

>

> DK

>

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Guest guest

I'll pay for the boxing gloves!!

> >

> > Thanks!

> >

> > I am looking forward to it, too.

> >

> > By the way, is it true that you invited Dr Minshew to debate me in

> > Pittsburgh, and she REFUSED?

> >

> > Isn't she the one who was " taking the gloves off? " What happened?

Anyone

> > know?

> >

> > Why does she refuse to share a stage with me, or anyone else for that

> > matter, and discuss these serious issues like a grownup, instead of

> > issuing forth with infantile boxing methaphors from the safety of her

> > office, I wonder?

> >

> > I am not afraid to debate this fair and square, so why is Dr. Minshew?

> > Is this the type of medical public figure that we are supposed to

> > respect and revere? Why did Offit refuse to appear on Larry King?

> > Why did the CDC refuse? If I am so wrong, so ignorant, surely they

could

> > make mincemeat out of me, so why don't they?

> >

> > Courage is not a widely held shining quality of the medical

profession,

> > I fear, (with some very obvious exceptions).

> >

> > DK

> >

>

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