Re: Just curious

[Guest guest]

I found out about Dr. G. after receiving info on a CFIDS conference. I had

been traveling to different doctors over the years, trying to help my son.

I knew there was a connection with CFIDS, but none of those docs worked with

children. I had no idea that there was a pediatrician about two hours south

of me.( in Ca.) My younger son has been on treatment for the past 1 1/2yrs.

My older son became a patient about 4 mos after the younger one.

Cheryl

>

> I have been on this list for over a year and my son has been a patient of

Dr.

> Goldberg's for almost four years. I have been curious where many of you

> reside so I can learn how wide spread information goes.

>

> We live in Spokane, Washington. Where do all of you live? Becky

[Guest guest]

On Sun, 24 Sep 2000 14:30:14 EDT rampub506@... wrote:

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>

>I have been on this list for over a year and my son has been a patient of Dr.

>Goldberg's for almost four years. I have been curious where many of you

>reside so I can learn how wide spread information goes.

>

>We live in Spokane, Washington. Where do all of you live? Becky

>Hi Becky, We just started with Goldberg in March and live in the Chicago area!!

Kathy B

>Responsibility for the content of this message lies strictly with

>the original author, and is not necessarily endorsed by or the

>opinion of the Research Institute.

>

>

>

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[Guest guest]

I have been with Dr. G for four years. We are in Greenville South

Carolina and one of our children, a son who is 7 years and 9 months is a

child.

Mercy

[Guest guest]

Black River, NY Kathy R

[Guest guest]

To all of you responding that have been with Dr Goldberg for sometime..Tell

us about your children and the results you have been seeing. We have an

appt with Dr G in Jan 2001. I am anxious (to say the least) to hear success

stories.

Thanks and much love;

Suzanne

>From: Sadka <psadka@...>

>Reply-egroups

>egroups

>Subject: Re: just curious

>Date: Sun, 24 Sep 2000 21:29:57 -0400

>

>I have been with Dr. G for four years. We are in Greenville South

>Carolina and one of our children, a son who is 7 years and 9 months is a

> child.

>Mercy

>

>

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[Guest guest]

I would love to hear success stories, as well. My daughter has been a

patient of Dr. Goldberg's since March 2000. She is 7 years old and was

diagnosed w/ PDD / Autism at 3 1/2 years of age. I am trying to stay

positive but it is a long process. I realize that patience is everything

because of the length of time it takes to get these children out of their

dsyfunctional state. She is currently on Famvir, Nizoral and Prozac was

started in late August. Please, please help with some success stories. For

I will be so appreciative. I get very down at times and this will hopefully

lift my spirits. Thanks to all. Michele D.

[Guest guest]

We're also in South Carolina--Myrtle Beach.

[Guest guest]

tina Hendrix--Santa , CA

[Guest guest]

Bonnie Marshall - Chicago

[Guest guest]

Ehmling---Houston, Texas

Re: just curious

>We're also in South Carolina--Myrtle Beach.

>

>

>Responsibility for the content of this message lies strictly with

>the original author, and is not necessarily endorsed by or the

>opinion of the Research Institute.

>

[Guest guest]

Margaret;

Enzymes are found in the cells of all living things. The enzymes

used in supplements are derived from 1)cow or pig pancreas, this is

pancreatin, Creon, or Viokase, and are available by prescription.

The are powdered extracts of pancreas and standardized on protease,

amylase, and lipase activity. They are not acid-stable, so must be

enterically-coated, meaning they don't release enzyme until in the

intestine. 2)Plant sources, such as papaya (papain), pineapple

(bromelain), fig (ficin), or kiwi (actinidin). 3) Fungal enzymes,

derived from non-pathogenic Aspergillus species. Usually raised in

Japan, where growing and using fungal enzymes is an art as well as a

science. Highly purified, with no allergenic fungal bodie present in

the final enzyme, these organisms produce a wide variety of

proteolytic, carbolytic, and lipolytic enzymes in concentrated form.

They are acid-stable and so work in the stomach with no special

treatment. Check out www.enzymeuniversity.com for more info on

individual enzymes.

Devin

> Hi

>

> Can someone tell me where the enzymes come from? How are they made?

>

> Margaret

>

>

>

[Guest guest]

Just went to a new rheumetologist at Mass General Hospital yesterday. I

asked him about it and his reply was that they are not seeing as good

results with kinberet as with Remicade and enbrel. Also it is not long out

of the trial phase and it is an injection every day. Enbrel twice a week is

bad enough for me! He also told me that for established patients the enbrel

is now available (that's me) but they can't start anyone new for a year. I

told him I get 3 months at a time and he asked if I keep a gun handy. I

liked this guy.

Temple

3 Fox Haven Way

Chelmsford, MA 01824

dat2352@...

[Guest guest]

I can think of two people in the group (besides you, ) who have tried

Kineret (anakinra), but it wasn't effective for them.

Although people like to lump Remicade (infliximab), Enbrel (etanercept) and

Kineret together in a group called biologics, Kineret targets a different

cytokine than Remicade and Enbrel do. While Remicade and Enbrel target tumor

necrosis factor alpha (TNF-alpha), Kineret inhibits interleukin-1 (IL-1). Both

TNF-alpha and IL-1 are thought to be key elements in the inflammatory process of

RA.

In studies to date of RA patients, Kineret isn't providing relief as dramatic as

that from Remicade and Enbrel.

Some researchers believe that a Remicade/Kineret or Enbrel/Kineret combination

may give more relief than any of the agents alone. Of course, in reality, the

cost right now of such a coupling would be prohibitive.

Re: [ ] Just Curious

> ; I find that interesting also...I am WAITING

> and WAITING on Enbrel and my rheumy said OK Remicade

> but there is an insurance problem with it for me...I

> then said what about Kirinet and he got a funny look

> on his face and then said there has been no trials

> with Kirinet in scleroderma so I really dont want to

> go there...I have noticed it doesnt seem to be the

> drug of choice......I also wondered what the problem

> seems to be with it...Kathi in OK

> --- grannyfellx6 <grannyfellx6@...> wrote:

> > Is there anyone on this site using Kineret? I have

> > heard alot about

> > Remicade working but haven't heard much about

> > Kineret. I have tried

> > both and neither worked for me. I had no problem

> > with Remicade but

> > didn't care much for the Kineret injections. Just

> > curious.

> >

> > in WA

[Guest guest]

Thank you , I remember reading about Kineret after I tried it and

then there was nothing more said, I had a feeling it wasn't very

affective. Although they did send me a cute little pocket radio.

Thanks for the information. in WA

[Guest guest]

Hey ,

Isn't that cute little radio really neat. I got one too. I guess I forgot

to let them know that I had a reaction to the med and am no longer taking it.

OOPS!

Hugs

Stacey in PA

[Guest guest]

Blepharophimosis runs in my husband's family. My husband and his father have it, our 1st son does not have it, and our 2nd son does have it. My understanding is that because blepharophimosis is caused by a genetic mutation there is nothing you can do to either cause or stop it from occuring. And the dr's told us that just because my 1st son doesn't have it does not mean that he is not a carrier of the gene. I believe they said that his kids may have a 25% chance of getting it if he is a carrier. So he may be carrying it, pass the gene on to his kids, and so forth until somewhere down the line it shows up again. My 2nd son, on the other hand, has a 50% chance of passing it to his children because he actually has the genetic mutation. But there's also a chance of the gene mutating (or however it works) on its own like alot of people here are saying that no one in the family had it-- obviously it has to start

somewhere.

Heidi-Clearwater

From: sandy redgate <sreddogs@...>blepharophimosis Sent: Thu, February 11, 2010 10:19:14 AMSubject: Re: blepharophimosis Just curious

Hi. They are fraternal. There is no family history of BPES that I am aware of.

Sandy,

Boston

From: Ganim <valganim (DOT) com>blepharophimosisSent: Thu, February 11, 2010 9:48:29 AMSubject: Re: blepharophimosis Just curious

Are your twins identical or fraternal?

From: <bbygirl1623>Subject: blepharophimosis Just curiousblepharophimosisDate: Tuesday, February 9, 2010, 1:55 AM

Hi group! I was wondering if any of the mothers(who do not have bpes themselves and their childs father does not have bpes) of a child/children with bpes took benadryl during their pregnancies? I am not trying to offend anyone, I am curious because there is no known "cause" Of blepharophimosis and I took benadryl only during my second pregnancy, just a few times, because it was needed and my daughter was born with bpes.

[Guest guest]

Hi aI am also from the Boston area and I have bpes (first one in my family)One of my daughter's also has bpes plus her new son.I find it really interesting that you have 2 children with bpes as the first ones in your family- it does seem very coincidental for something not to be going on in the prior generation.I know the genetics gets very complicated - my son, a doctor, has suggested that there may be subtle genetic changes in the prior generation that do not yet directly manifest in bpes - he has read the article by the Belgian doctor.I am in my sixties - if my parents were still alive, I would be interested in dna testing for all of us - my daughter and I at some point will look into it for the 3 of us, mainly out of curiosity.Have you seen a geneticist in the Boston area, I would love the name if you have?My daughter saw one at New England Medical Center when she was a baby (over 30 years ago) who was making a study of the syndrome - this was before the identification of the gene change - she was wonderful - she died at a young age unfortunately and I don't know what happened to her research, she was following the generations in a Maine family, that I remember.We were sent to her by an old time ophthalmologist from Mass Eye and Ear, Carl , and I always thought he was the one who first identified bpes as a genetic syndrome - but I've not seen his name in the current research.And until my daughter was born, I never knew it was genetic - my parents were told it was congenital - and that it was simply ptossis - and this was at Columbia Presbyterian in New York City.I have gone on a bit but I do find the genetics fascinating.Sent via BlackBerry from T-MobileFrom: PJC930@...Date: Thu, 11 Feb 2010 16:55:53 +0000 (UTC)<blepharophimosis >Subject: Re: blepharophimosis Just curious They had no answer. They said I should play the lotto.a J. Crowley blepharophimosis Just curiousblepharophimosisDate: Tuesday, February 9, 2010, 1:55 AM Hi group! I was wondering if any of the mothers(who do not have bpes themselves and their childs father does not have bpes) of a child/children with bpes took benadryl during their pregnancies? I am not trying to offend anyone, I am curious because there is no known "cause" Of blepharophimosis and I took benadryl only during my second pregnancy, just a few times, because it was needed and my daughter was born with bpes.

[Guest guest]

i was the first in line in my family then it missed my first son and my second son and daughter were born with it

blepharophimosis Just curious

blepharophimosis

Date: Tuesday, February 9, 2010, 1:55 AM

Hi group! I was wondering if any of the mothers(who do not have bpes themselves and their childs father does not have bpes) of a child/children with bpes took benadryl during their pregnancies? I am not trying to offend anyone, I am curious because there is no known "cause" Of blepharophimosis and I took benadryl only during my second pregnancy, just a few times, because it was needed and my daughter was born with bpes.

[Guest guest]

Is it just me or does there seem to be a concentration on BPES cases in New

England, USA and England, UK? Genetics are really interesting, I would love to

see a map with BPES cases on it.

-Joe

Boston, MA

>

>

>

> From: <bbygirl1623>

> Subject: blepharophimosis Just curious

> blepharophimosis

> Date: Tuesday, February 9, 2010, 1:55 AM

>

>

>  

>

> Hi group! I was wondering if any of the mothers(who do not have bpes

themselves and their childs father does not have bpes) of a child/children with

bpes took benadryl during their pregnancies? I am not trying to offend anyone, I

am curious because there is no known " cause " Of blepharophimosis and I took

benadryl only during my second pregnancy, just a few times, because it was

needed and my daughter was born with bpes.

>

[Guest guest]

Hi JoeI met you when you were a babyI too had wondered about the New England aspect and the UK contingent - and I am very interested in who has bpes, where they live etcHelen Sent via BlackBerry from T-MobileFrom: "joebreed19" <joebreed19@...>Date: Thu, 11 Feb 2010 21:25:58 -0000<blepharophimosis >Subject: blepharophimosis Re: Just curious Is it just me or does there seem to be a concentration on BPES cases in New England, USA and England, UK? Genetics are really interesting, I would love to see a map with BPES cases on it.-JoeBoston, MA > > > > From: <bbygirl1623> > Subject: blepharophimosis Just curious > blepharophimosis > Date: Tuesday, February 9, 2010, 1:55 AM > > >   > > Hi group! I was wondering if any of the mothers(who do not have bpes themselves and their childs father does not have bpes) of a child/children with bpes took benadryl during their pregnancies? I am not trying to offend anyone, I am curious because there is no known " cause " Of blepharophimosis and I took benadryl only during my second pregnancy, just a few times, because it was needed and my daughter was born with bpes.>

[Guest guest]

Hi Joe

It is hard to tell where people are from, because many people

don’t mention it.

If you look here: http://www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=gene & part=bpes  

Under “prevalence” you’ll see:

The

prevalence of BPES is unknown.No differences in prevalence based on sex, race,

or ethnicity have been reported.

From time to time I post a message listing where people are

from. But my source is the members of this group who have chosen to put their details

in the database on the site. If you want to try your hand at doing some

analysis, go the site, click on database – you’ll see the

list. You can export it and analyse it.

Take care

Shireen

London, England

From: blepharophimosis

[mailto:blepharophimosis ] On Behalf Of joebreed19

Sent: 11 February 2010 21:26

blepharophimosis

Subject: blepharophimosis Re: Just curious

Is it just me or does there seem to be a

concentration on BPES cases in New England, USA and England, UK? Genetics are

really interesting, I would love to see a map with BPES cases on it.

-Joe

Boston, MA

>

>

>

> From: <bbygirl1623>

> Subject: blepharophimosis Just curious

> blepharophimosis

> Date: Tuesday, February 9, 2010, 1:55 AM

>

>

> Â

>

> Hi group! I was wondering if any of the mothers(who do not have bpes themselves

and their childs father does not have bpes) of a child/children with bpes took

benadryl during their pregnancies? I am not trying to offend anyone, I am

curious because there is no known " cause " Of blepharophimosis and I

took benadryl only during my second pregnancy, just a few times, because it was

needed and my daughter was born with bpes.

>

[Guest guest]

I too am from New England my first son had BPES with no family history. My second child did not.

Janet

Bedford NH

From: Farruggio <thomas_far@...>blepharophimosis Sent: Thu, February 11, 2010 11:06:00 AMSubject: Re: blepharophimosis Just curious

I was thinking the same thing when I read this post. 2 out of 5 makes it plausible that a relationship exists???? This is very interesting.

From: Adam Hecei <ieceh (DOT) com>blepharophimosisSent: Thu, February 11, 2010 10:57:43 AMSubject: Re: blepharophimosis Just curious

if 2 out of the 5 have it...then it isn't a freak thing?...do they have any answer for that a?

From: "PJC930comcast (DOT) net" <PJC930comcast (DOT) net>blepharophimosisSent: Thu, February 11, 2010 10:42:09 AMSubject: Re: blepharophimosis Just curious

I have 5 kids. My husband and I and families don't have BPES. My 1st was born w/BPES(Boy). I had 3 more that didn't have BPES. My 5th child (girl) does have BPES and more intense than my 1st born. She didn't open her eyes for 2wks after she was born. I did have gene testing on my 1st born.They stated it was just a freak thing. I believe meds wasn't the cause. I hope this helps.

a J. CrowleyMiddleboro, MA (outside of Boston)

-----From: "sandy redgate" <sreddogs (DOT) com>blepharophimosisSent: Thursday, February 11, 2010 7:24:24 AM GMT -05:00 US/Canada EasternSubject: Re: blepharophimosis Just curious

Hello all.

Well, it seems fairly obvious that there seems to be no link but as further example... I ate healthy, did all the right things, etc. I was nervous because I did not know I was pregnant for a few weeks as a pregnancy test came up negative and I had a drink here and there. My Doctor's told me not to worry but of course I did anyhow.

I had twins, one with BPES and the other, no. So - if it was something that could be attributed to Benadryl or something else... they both would have been born with it. Its just "one of those things".

Sandy,

Boston

From: L j & t j Costello <tltne@.... nz>blepharophimosisSent: Wed, February 10, 2010 3:51:26 PMSubject: Re: blepharophimosis Just curious

I never took Benadryl, or anything else, I took prenatel vitamins, ate healthy, didn't even eat sushi! Our first son wasn't born with bleph but our 2nd son was? And neither me nor my husband or anyone in our families have bleph??? Go figure... people just won't to think it's something they did wrong, or something they ate or medication they took, that's not the case....if it's in your family then you would half expect your child to *perhaps* have it, but when it's not hereditary it's just one of those things you can't control depsite everything right you thought you did do???

Leanne C

New Zealand

From: Ganim <valganim (DOT) ..com>blepharophimosisSent: Thu, 11 February, 2010 4:46:36 AMSubject: Re: blepharophimosis Just curious

I have need taken benadryl and my twins where born with BPES and neither my husband or I have BPES.

From: <bbygirl1623>Subject: blepharophimosis Just curiousblepharophimosisDate: Tuesday, February 9, 2010, 1:55 AM

Hi group! I was wondering if any of the mothers(who do not have bpes themselves and their childs father does not have bpes) of a child/children with bpes took benadryl during their pregnancies? I am not trying to offend anyone, I am curious because there is no known "cause" Of blepharophimosis and I took benadryl only during my second pregnancy, just a few times, because it was needed and my daughter was born with bpes.

Be smarter than spam. See how smart SpamGuard is at giving junk email the boot with the All-new

[Guest guest]

Tailynn is the only one in the family both sides to have BPES Mommy2My3BeautifulAngels From: miss <ssimtenaj@...>blepharophimosis Sent: Thu, February 11, 2010 4:47:46 PMSubject: Re: blepharophimosis Just curious

I too am from New England my first son had BPES with no family history. My second child did not.

Janet

Bedford NH

From: Farruggio <thomas_far (DOT) ca>blepharophimosisSent: Thu, February 11, 2010 11:06:00 AMSubject: Re: blepharophimosis Just curious

I was thinking the same thing when I read this post. 2 out of 5 makes it plausible that a relationship exists???? This is very interesting.

From: Adam Hecei <ieceh (DOT) com>blepharophimosisSent: Thu, February 11, 2010 10:57:43 AMSubject: Re: blepharophimosis Just curious

if 2 out of the 5 have it...then it isn't a freak thing?...do they have any answer for that a?

From: "PJC930comcast (DOT) net" <PJC930comcast (DOT) net>blepharophimosisSent: Thu, February 11, 2010 10:42:09 AMSubject: Re: blepharophimosis Just curious

I have 5 kids. My husband and I and families don't have BPES. My 1st was born w/BPES(Boy). I had 3 more that didn't have BPES. My 5th child (girl) does have BPES and more intense than my 1st born. She didn't open her eyes for 2wks after she was born. I did have gene testing on my 1st born.They stated it was just a freak thing. I believe meds wasn't the cause. I hope this helps.

a J. CrowleyMiddleboro, MA (outside of Boston)

-----From: "sandy redgate" <sreddogs (DOT) com>blepharophimosisSent: Thursday, February 11, 2010 7:24:24 AM GMT -05:00 US/Canada EasternSubject: Re: blepharophimosis Just curious

Hello all.

Well, it seems fairly obvious that there seems to be no link but as further example... I ate healthy, did all the right things, etc. I was nervous because I did not know I was pregnant for a few weeks as a pregnancy test came up negative and I had a drink here and there. My Doctor's told me not to worry but of course I did anyhow.

I had twins, one with BPES and the other, no. So - if it was something that could be attributed to Benadryl or something else... they both would have been born with it. Its just "one of those things".

Sandy,

Boston

From: L j & t j Costello <tltne@.... nz>blepharophimosisSent: Wed, February 10, 2010 3:51:26 PMSubject: Re: blepharophimosis Just curious

I never took Benadryl, or anything else, I took prenatel vitamins, ate healthy, didn't even eat sushi! Our first son wasn't born with bleph but our 2nd son was? And neither me nor my husband or anyone in our families have bleph??? Go figure... people just won't to think it's something they did wrong, or something they ate or medication they took, that's not the case....if it's in your family then you would half expect your child to *perhaps* have it, but when it's not hereditary it's just one of those things you can't control depsite everything right you thought you did do???

Leanne C

New Zealand

From: Ganim <valganim (DOT) ..com>blepharophimosisSent: Thu, 11 February, 2010 4:46:36 AMSubject: Re: blepharophimosis Just curious

I have need taken benadryl and my twins where born with BPES and neither my husband or I have BPES.

From: <bbygirl1623>Subject: blepharophimosis Just curiousblepharophimosisDate: Tuesday, February 9, 2010, 1:55 AM

Hi group! I was wondering if any of the mothers(who do not have bpes themselves and their childs father does not have bpes) of a child/children with bpes took benadryl during their pregnancies? I am not trying to offend anyone, I am curious because there is no known "cause" Of blepharophimosis and I took benadryl only during my second pregnancy, just a few times, because it was needed and my daughter was born with bpes.

Be smarter than spam. See how smart SpamGuard is at giving junk email the boot with the All-new