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Barbara,

All of my childhood doctor visits concerning CMT were through the A.I.

DuPont Institute in Wilmington. Unfortunately, I don't have any experience

with the doctors practicing there today because I was treated in the late

1960's and early 70's.

I do know it is a hospital with a VERY long history of recognizing and

treating CMT. My oldest sister had her CMT surgery there, and that had to

be back in the 50's or even earlier. The expertise there should be top-rate

based on their long history, but like I said I have no experience with

specific doctors there in the last 25 years.

Good luck in your decision!

Ruth

>From: ranagan@...

>Reply-To: CMTUS (AT) onelist (DOT) com

>To: CMTUS (AT) onelist (DOT) com

>Subject: Doctors

>Date: 9 Feb 2000 15:13:43 -0000

>

>From: ranagan@...

>

>Hi, Barbara here.

>

>My apologies to nne for not sending the promised articles. I have

>been running around and I simply dropped the ball. I will try to send them

>soon.

>

>I want to ask the group if any of you have had specific experience with

>Doctors at s Hopkins University( " JHU " ) or at the Alfred I. duPont

>Hospital for Children ( " duPont " ) in Wilmington, Delaware. Slowly but

>surely, I am moving toward surgery for Alice (age 8).

>

>We have seen Dr. Jayakumar ( " Dr. Jay " - an orthopedist), Dr. Scavina

>(neurologist),

>and Dr. McKensie (orthopedist) -- all of whom are at duPont. We have also

>seen Dr. Crawford (neurologist), Dr. (orthopedist) and Dr.

>Sponseller

>(orthopedist) at JHU.

>

>If you do not feel comfortable commenting in this forum, please feel free

>to contact

>me directly at ranagan@... or at my home phone . Thanks

>

>Barbara

>

>---------------------------

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Barbara,

All of my childhood doctor visits concerning CMT were through the A.I.

DuPont Institute in Wilmington. Unfortunately, I don't have any experience

with the doctors practicing there today because I was treated in the late

1960's and early 70's.

I do know it is a hospital with a VERY long history of recognizing and

treating CMT. My oldest sister had her CMT surgery there, and that had to

be back in the 50's or even earlier. The expertise there should be top-rate

based on their long history, but like I said I have no experience with

specific doctors there in the last 25 years.

Good luck in your decision!

Ruth

>From: ranagan@...

>Reply-To: CMTUS (AT) onelist (DOT) com

>To: CMTUS (AT) onelist (DOT) com

>Subject: Doctors

>Date: 9 Feb 2000 15:13:43 -0000

>

>From: ranagan@...

>

>Hi, Barbara here.

>

>My apologies to nne for not sending the promised articles. I have

>been running around and I simply dropped the ball. I will try to send them

>soon.

>

>I want to ask the group if any of you have had specific experience with

>Doctors at s Hopkins University( " JHU " ) or at the Alfred I. duPont

>Hospital for Children ( " duPont " ) in Wilmington, Delaware. Slowly but

>surely, I am moving toward surgery for Alice (age 8).

>

>We have seen Dr. Jayakumar ( " Dr. Jay " - an orthopedist), Dr. Scavina

>(neurologist),

>and Dr. McKensie (orthopedist) -- all of whom are at duPont. We have also

>seen Dr. Crawford (neurologist), Dr. (orthopedist) and Dr.

>Sponseller

>(orthopedist) at JHU.

>

>If you do not feel comfortable commenting in this forum, please feel free

>to contact

>me directly at ranagan@... or at my home phone . Thanks

>

>Barbara

>

>---------------------------

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  • 4 weeks later...
Guest guest

Sherri-

Curious as to who you see in Wilmington. We live outside of Atlantic City.

We have done New York and Dr. Sampson and in philly we saw Dr. . Now

we go to duPont and have been quite happy.

Phyllis--mom to

AJ (12/22/95) EG, GERD, Asthma, Allergies, speech delay and bilateral

sensori neural hearing loss

Remi (8/3/92) Spina Bifida, LATEX, avacodo, broccoli, chocolate, mushrooms,

peanuts, shellfish, & tree nut allergies

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Guest guest

Sherri:

The Gi Doc in Philadelphia is at St., s and he is wonderful and

happens to be Clayton's regular GI. Hisname is Dr. and his number

is . He has been very busy latekly but hopefully you will not

have to wait too long to see him - lots of new patients. He is great and we

are do to see him on March 30th for a bi-monthly follow-up.

Sharon

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  • 1 year later...
Guest guest

Hi Everyone.

Well,I hope this reads o.k....here goes..

I met the Doctor in December and he banded me in January,I see him quite

often until I get this fill thing worked out.I know all the decisions are

mine and I know he will look after me.I know the numbers on the scales are

going down.And I know it is his knowledge that has made that possible and I

respect that.

thanks

Jenette

Banded.Tony Kierath

15 Jan 2001

Bethesda hosp PERTH

last count 27kgs down

_________________________________________________________________________

Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com.

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  • 7 months later...

I think that we ought to come up with a battery of tests and the labs to do

them at that we can use. I keep losing stuff, but little by little I seem to

gather there are certain tests that I should have done--say fifteen years

ago. SJ

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Marsha wrote

It is easy to spend money when you think a particular therapy will fix

you. But I can't tell you how many times I've thought this and my money

is gone and I'm not better

Amen to that Marsha, I could have said that myself. In fact, I have!

But I have ruled things out and have figured out why certain things haven't

worked for me. So I feel closer to resolving the problem.

Yes, it is true. Doing each thing does help to rule out what doesn't work

" for YOU " . I read just last week a little story about Edison.

Someone asked him why he kept trying when he made so many " failures " He

replied that he hadn't had any failures, but that each " failed " experiment

brought him closer to the final success.

I guess we need to be an " Edison " and hope that our " success " comes sooner

rather than later.

Blessings, Dawn

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  • 10 months later...

youngjaem,

Isn't it ironic that you have to figure out how to get out of the medical

system, away from doctors, and figure it out yourself in order to get well!

Celeste

Re: Mercury blood levels

If the test was unchallenged your tests will be normal, unless you

had a recent exposure to a lot of mercury, I did unchallenged and

challenged tests, In my opinion you personally are the only one that

knows if your poisoned or not, When I started to get symptons of

mercury poisoning, I didn't know what to do cause all my tests were

normal, then I thought back on my history and the only thing that

would be affecting my health would be mercury that was spilled in my

house some years back. When I went to the doctor they really did not

know much about mercury poisoning, I told them that a regular blood

and urine test will not do anything, they looked at me like I was

stupid and the most frustrating thing for me was when my doctors told

me its not the mercury its all in your head, it is depression. My

suggestion is get Andys book, I plan to do his chelation protocol,

cuz he explains the situation to you not just telling you to do

something without an explanation, cuz I tried a lot of protocol's

that just messed me up, and at this moment I am worse then ever, so

hopefully his will work, cuz this is pretty much the last protocol I

will try cuz all my funds are gone and i'm too sick to work.

> It seems like there's no agreed upon " toxic " blood level, but I'm

just

> curious since my blood test(s) have shown elevated levels. My

levels

> are 21.8 mcg/l where 0-14.9 mcg/l was considered normal and 51 mcg/l

> considered the toxic limit. None of the doctors (MD's) that I have

> gone to consider that to be a problem and have since wasted a few

> $1000s more of my money (not to mention the 80% paid by insurance)

on

> MRI's, etc.

>

> Is that high? I have the typical mercury poisoning symptoms and at

> least 15 amalgam fillings. Well, 5 less as of a few weeks ago. I

> decided to take this into my own hands and get rid of the amalgam

and

> will finally be amalgam free in a few more visits.

>

> I was just wondering if anyone's compiled average blood levels of

> mercury. Andy perhaps? My urine tests also showed mercury, but

were

> also considered too low to pose any health risk. Keep in mind that

> this diagnosis was from a mercury expert recommended by the CDC who

> cost me over $1000 in copays, etc. and finally suggested that I may

be

> suffering from depression and recommended a phsychiatrist. Am I

> depressed? Yes, because all of these doctors give me the runaround

> and waste my time and money. 3 years of doctors before one of them

> finally decided to test for heavy metals.

>

> -Steve

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Aint that the truth, Its funny cause I think that If I didn't go to

see some of my past and numerous doctors, maybe.. my health wouldn't

be as bad as it is, but definitely my pockets would be a little

fatter and I wouldn't be in debt.

But fortunately and finally I found a good doctor that has the same

protocol as Andy's and is willing to help me instead of telling me

I'm wrong and telling me the pain that I'm feeling is not real. But

I know now that to get better its really up to me, and no doctor can

do that for me

> > It seems like there's no agreed upon " toxic " blood level, but

I'm

> just

> > curious since my blood test(s) have shown elevated levels. My

> levels

> > are 21.8 mcg/l where 0-14.9 mcg/l was considered normal and 51

mcg/l

> > considered the toxic limit. None of the doctors (MD's) that I

have

> > gone to consider that to be a problem and have since wasted a

few

> > $1000s more of my money (not to mention the 80% paid by

insurance)

> on

> > MRI's, etc.

> >

> > Is that high? I have the typical mercury poisoning symptoms

and at

> > least 15 amalgam fillings. Well, 5 less as of a few weeks

ago. I

> > decided to take this into my own hands and get rid of the

amalgam

> and

> > will finally be amalgam free in a few more visits.

> >

> > I was just wondering if anyone's compiled average blood levels

of

> > mercury. Andy perhaps? My urine tests also showed mercury,

but

> were

> > also considered too low to pose any health risk. Keep in mind

that

> > this diagnosis was from a mercury expert recommended by the CDC

who

> > cost me over $1000 in copays, etc. and finally suggested that I

may

> be

> > suffering from depression and recommended a phsychiatrist. Am I

> > depressed? Yes, because all of these doctors give me the

runaround

> > and waste my time and money. 3 years of doctors before one of

them

> > finally decided to test for heavy metals.

> >

> > -Steve

>

>

>

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Aint that the truth, Its funny cause I think that If I didn't go to

see some of my past and numerous doctors, maybe.. my health wouldn't

be as bad as it is, but definitely my pockets would be a little

fatter and I wouldn't be in debt.

But fortunately and finally I found a good doctor that has the same

protocol as Andy's and is willing to help me instead of telling me

I'm wrong and telling me the pain that I'm feeling is not real. But

I know now that to get better its really up to me, and no doctor can

do that for me

> > It seems like there's no agreed upon " toxic " blood level, but

I'm

> just

> > curious since my blood test(s) have shown elevated levels. My

> levels

> > are 21.8 mcg/l where 0-14.9 mcg/l was considered normal and 51

mcg/l

> > considered the toxic limit. None of the doctors (MD's) that I

have

> > gone to consider that to be a problem and have since wasted a

few

> > $1000s more of my money (not to mention the 80% paid by

insurance)

> on

> > MRI's, etc.

> >

> > Is that high? I have the typical mercury poisoning symptoms

and at

> > least 15 amalgam fillings. Well, 5 less as of a few weeks

ago. I

> > decided to take this into my own hands and get rid of the

amalgam

> and

> > will finally be amalgam free in a few more visits.

> >

> > I was just wondering if anyone's compiled average blood levels

of

> > mercury. Andy perhaps? My urine tests also showed mercury,

but

> were

> > also considered too low to pose any health risk. Keep in mind

that

> > this diagnosis was from a mercury expert recommended by the CDC

who

> > cost me over $1000 in copays, etc. and finally suggested that I

may

> be

> > suffering from depression and recommended a phsychiatrist. Am I

> > depressed? Yes, because all of these doctors give me the

runaround

> > and waste my time and money. 3 years of doctors before one of

them

> > finally decided to test for heavy metals.

> >

> > -Steve

>

>

>

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Aint that the truth, Its funny cause I think that If I didn't go to

see some of my past and numerous doctors, maybe.. my health wouldn't

be as bad as it is, but definitely my pockets would be a little

fatter and I wouldn't be in debt.

But fortunately and finally I found a good doctor that has the same

protocol as Andy's and is willing to help me instead of telling me

I'm wrong and telling me the pain that I'm feeling is not real. But

I know now that to get better its really up to me, and no doctor can

do that for me

> > It seems like there's no agreed upon " toxic " blood level, but

I'm

> just

> > curious since my blood test(s) have shown elevated levels. My

> levels

> > are 21.8 mcg/l where 0-14.9 mcg/l was considered normal and 51

mcg/l

> > considered the toxic limit. None of the doctors (MD's) that I

have

> > gone to consider that to be a problem and have since wasted a

few

> > $1000s more of my money (not to mention the 80% paid by

insurance)

> on

> > MRI's, etc.

> >

> > Is that high? I have the typical mercury poisoning symptoms

and at

> > least 15 amalgam fillings. Well, 5 less as of a few weeks

ago. I

> > decided to take this into my own hands and get rid of the

amalgam

> and

> > will finally be amalgam free in a few more visits.

> >

> > I was just wondering if anyone's compiled average blood levels

of

> > mercury. Andy perhaps? My urine tests also showed mercury,

but

> were

> > also considered too low to pose any health risk. Keep in mind

that

> > this diagnosis was from a mercury expert recommended by the CDC

who

> > cost me over $1000 in copays, etc. and finally suggested that I

may

> be

> > suffering from depression and recommended a phsychiatrist. Am I

> > depressed? Yes, because all of these doctors give me the

runaround

> > and waste my time and money. 3 years of doctors before one of

them

> > finally decided to test for heavy metals.

> >

> > -Steve

>

>

>

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It's amazing you found a doctor who uses Andy's protocol! That's great!

Celeste

Re: Doctors

Aint that the truth, Its funny cause I think that If I didn't go to

see some of my past and numerous doctors, maybe.. my health wouldn't

be as bad as it is, but definitely my pockets would be a little

fatter and I wouldn't be in debt.

But fortunately and finally I found a good doctor that has the same

protocol as Andy's and is willing to help me instead of telling me

I'm wrong and telling me the pain that I'm feeling is not real. But

I know now that to get better its really up to me, and no doctor can

do that for me

> > It seems like there's no agreed upon " toxic " blood level, but

I'm

> just

> > curious since my blood test(s) have shown elevated levels. My

> levels

> > are 21.8 mcg/l where 0-14.9 mcg/l was considered normal and 51

mcg/l

> > considered the toxic limit. None of the doctors (MD's) that I

have

> > gone to consider that to be a problem and have since wasted a

few

> > $1000s more of my money (not to mention the 80% paid by

insurance)

> on

> > MRI's, etc.

> >

> > Is that high? I have the typical mercury poisoning symptoms

and at

> > least 15 amalgam fillings. Well, 5 less as of a few weeks

ago. I

> > decided to take this into my own hands and get rid of the

amalgam

> and

> > will finally be amalgam free in a few more visits.

> >

> > I was just wondering if anyone's compiled average blood levels

of

> > mercury. Andy perhaps? My urine tests also showed mercury,

but

> were

> > also considered too low to pose any health risk. Keep in mind

that

> > this diagnosis was from a mercury expert recommended by the CDC

who

> > cost me over $1000 in copays, etc. and finally suggested that I

may

> be

> > suffering from depression and recommended a phsychiatrist. Am I

> > depressed? Yes, because all of these doctors give me the

runaround

> > and waste my time and money. 3 years of doctors before one of

them

> > finally decided to test for heavy metals.

> >

> > -Steve

>

>

>

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