New to group

April 22, 2003

Hi,

Thanks for the e-mail. The Dr. said that he wouldn't be

able to play sports without corrective surgery because he

has no perifial(sp?) vision. I guess he wouldn't be able to

see someone or something coming at him. He does run into

things a lot and trips over things quite often. He is very

smart and has made accomadations for this and is doing

better. We were referred to a plastic surgeon, but looked

for them on the internet and couldn't find them. Should

this surgery be done by a specific Dr.? Should they have

special training? What kinds of questions should we ask?

Thanks,

Hope

On Mon, 21 Apr 2003 22:59:56 EDT

thefelton4@... wrote:

> Hi,

>

> My name is Patty and I have a daughter and husband with

> BPES. My daughter,

> who is 3 1/2, just had the first of 2 surgeries on April

> 4, 2003 to correct

> the telecanthus and epicanthal folds. She did well with

> the surgery but

> developed an infection which required her to go back to

> surgery to be

> drained. However, she is doing well now and recovering

> well. Her incisions

> are healing very well and she appears to open her eyes

> more already. Her MD

> will correct the drooping eyelids in about 6 months to 1

> year. I would be

> happy to email you if you'd like.

>

> My husband and I were also wondering why the MD said he

> probably won't be

> able to play sports. My husband, who also had the

> corrective surgery done

> about 28 years ago, was an athlete throughout his whole

> life, playing

> baseball and football. It never held him back. He does

> have the

> sensitivity to sunlight also, as does my daughter.

>

> Patty

April 22, 2003

Hi Hope

I have played lots of sports, both outdoor and indoor. I find that bright sunlight bothers me, but wearing good sunglasses seems to solve that problem mostly.

I have no problem driving, and I know of many people with BPES who drive.

I believe that my peripheral vision is not the same as somebody without BPES, but this has not got in my way much - especially for sports and driving. I think that the problem (after normal surgery) is very minimal indeed. The only thing I can do well is look thru binoculars - and as I don't need to use those much, this has not got in my way.

Any optometrist (or optician) can measure peripheral vision. So you will be able to get a clear cut answer on this in an eye test.

If you look at the web site I have created, you will see some articles on surgery, and some links to some useful organisations.

http://freespace.virgin.net/andy.bowles

also, you might like to look here:

http://med-aapos.bu.edu/

I hope that you can find some useful information.

Shireen

-----Original Message-----From: Hope Sheffield [mailto:daintydan@...]Sent: 22 April 2003 16:02blepharophimosis Subject: Re: blepharophimosis new to groupHi,Thanks for the e-mail. The Dr. said that he wouldn't beable to play sports without corrective surgery because hehas no perifial(sp?) vision. I guess he wouldn't be able tosee someone or something coming at him. He does run intothings a lot and trips over things quite often. He is verysmart and has made accomadations for this and is doingbetter. We were referred to a plastic surgeon, but lookedfor them on the internet and couldn't find them. Shouldthis surgery be done by a specific Dr.? Should they havespecial training? What kinds of questions should we ask?Thanks,HopeOn Mon, 21 Apr 2003 22:59:56 EDTthefelton4@... wrote:> Hi,> > My name is Patty and I have a daughter and husband with> BPES. My daughter, > who is 3 1/2, just had the first of 2 surgeries on April> 4, 2003 to correct > the telecanthus and epicanthal folds. She did well with> the surgery but > developed an infection which required her to go back to> surgery to be > drained. However, she is doing well now and recovering> well. Her incisions > are healing very well and she appears to open her eyes> more already. Her MD > will correct the drooping eyelids in about 6 months to 1> year. I would be > happy to email you if you'd like.> > My husband and I were also wondering why the MD said he> probably won't be > able to play sports. My husband, who also had the> corrective surgery done > about 28 years ago, was an athlete throughout his whole> life, playing > baseball and football. It never held him back. He does> have the > sensitivity to sunlight also, as does my daughter.> > Patty

April 22, 2003

typo error ....

The only thing I can't do well is look thru binoculars - and as I don't need to use those much, this has not got in my way.

-----Original Message-----From: Andy Bowles & Shireen Mohandes [mailto:andy.bowles@...]Sent: 22 April 2003 19:02blepharophimosis Subject: RE: blepharophimosis new to group

Hi Hope

I have played lots of sports, both outdoor and indoor. I find that bright sunlight bothers me, but wearing good sunglasses seems to solve that problem mostly.

I have no problem driving, and I know of many people with BPES who drive.

I believe that my peripheral vision is not the same as somebody without BPES, but this has not got in my way much - especially for sports and driving. I think that the problem (after normal surgery) is very minimal indeed. The only thing I can do well is look thru binoculars - and as I don't need to use those much, this has not got in my way.

Any optometrist (or optician) can measure peripheral vision. So you will be able to get a clear cut answer on this in an eye test.

If you look at the web site I have created, you will see some articles on surgery, and some links to some useful organisations.

http://freespace.virgin.net/andy.bowles

also, you might like to look here:

http://med-aapos.bu.edu/

I hope that you can find some useful information.

Shireen

-----Original Message-----From: Hope Sheffield [mailto:daintydan@...]Sent: 22 April 2003 16:02blepharophimosis Subject: Re: blepharophimosis new to groupHi,Thanks for the e-mail. The Dr. said that he wouldn't beable to play sports without corrective surgery because hehas no perifial(sp?) vision. I guess he wouldn't be able tosee someone or something coming at him. He does run intothings a lot and trips over things quite often. He is verysmart and has made accomadations for this and is doingbetter. We were referred to a plastic surgeon, but lookedfor them on the internet and couldn't find them. Shouldthis surgery be done by a specific Dr.? Should they havespecial training? What kinds of questions should we ask?Thanks,HopeOn Mon, 21 Apr 2003 22:59:56 EDTthefelton4@... wrote:> Hi,> > My name is Patty and I have a daughter and husband with> BPES. My daughter, > who is 3 1/2, just had the first of 2 surgeries on April> 4, 2003 to correct > the telecanthus and epicanthal folds. She did well with> the surgery but > developed an infection which required her to go back to> surgery to be > drained. However, she is doing well now and recovering> well. Her incisions > are healing very well and she appears to open her eyes> more already. Her MD > will correct the drooping eyelids in about 6 months to 1> year. I would be > happy to email you if you'd like.> > My husband and I were also wondering why the MD said he> probably won't be > able to play sports. My husband, who also had the> corrective surgery done > about 28 years ago, was an athlete throughout his whole> life, playing > baseball and football. It never held him back. He does> have the > sensitivity to sunlight also, as does my daughter.> > Patty

April 23, 2003

Howdy Hope,

There are probably lots of vision-related things that someone with

full-on BPES would have trouble doing without corrective surgery, sport

being just one of those things. But after corrective surgery almost

anything is possible, since corrective surgery (especially these days)

is so effective. I had pretty full-on BPES and surgical correction about

35 years ago, when the surgical techniques were still being worked out,

and I have no trouble doing anything vision-related. (However, I have a

" lazy eye " so I can't see 3-D things very well, but that's not

necessarily something that other BPES folks have).

It's not surprising that your son is smart. There seems to be some

correlation between BPES and high intelligence, but I can't recall any

supporting research off the top of my head.

As for surgeons, look for an ophthalmic surgeon or an occuloplastic

surgeon (I think that's what they're called? We don' got none o' dem

here in Oz). Most ophthalmic surgeons here seem to include lacrymal

(eyelid) plastic surgery in their skill set, so I expect it's the same

where you are. BUT: BPES is so rare that many eye specialists and eye

surgeons never see a case of it in their lives but are only too keen to

have a go at fixing a case. Don't go there. Make sure you find a surgeon

who knows what it is and who already has experience with BPES corrective

surgery. Interview them as if they are applying for a job and you are

the employer (which of course is exactly the case). Ask if they have

before/after photos of their cases. Ask if they've done Z-plasty

operations (to correct the epicanthus inversus), facia lata sling

operations (to correct the ptosis) and eyelid opening extensions (to

correct the blepharophimosis and telecanthus). I'd ask about tear-duct

relocation ops too, but that was just one of my specific problems and

you might not need to worry. It's preferable to find an ophthalmic

surgeon who has experience with paediatric cases, since there are

different considerations than with adults (e.g. a child's face can grow

during the healing process). Ask them if they've published any relevant

papers in ophthalmic or surgical journals.

I'd start looking in the phone book (Yellow Pages), not the Internet.

That way you're more likely to find someone closer to home. If you find

a doctor who looks appropriate (i.e. who makes it to your 'short-list')

then look for them on the Internet to see if they've published any

papers in ophthalmic journals. Also, referrals from other doctors can be

useful. Even if a doc doesn't know what BPES is or hasn't had a chance

to play with it, he or she might know one who has.

Enough typing for now. I've blathered on for too long already.

Hope this helps.

Rob

Syn-er-ney, Oz

Hope Sheffield wrote:

>Hi,

>Thanks for the e-mail. The Dr. said that he wouldn't be

>able to play sports without corrective surgery because he

>has no perifial(sp?) vision. I guess he wouldn't be able to

>see someone or something coming at him. He does run into

>things a lot and trips over things quite often. He is very

>smart and has made accomadations for this and is doing

>better. We were referred to a plastic surgeon, but looked

>for them on the internet and couldn't find them. Should

>this surgery be done by a specific Dr.? Should they have

>special training? What kinds of questions should we ask?

>Thanks,

>Hope

>

April 23, 2003

Rob wrote:

D'oh! I spelled Samaranch's " Sydney " wrong.

>Syn-er-ney, Oz

>

Should of course be:

Syd-er-ney, Oz.

July 30, 2003

Hi ,

I sent you a message in the ptosis group as well. Your story is so

close to what I experienced as far as my daughter not being able to

open her eyes when she was born. At about 1-1/2 weeks old she was

able to peek through one at time usually. Very rarely could she get

them both open at the same time. Have you looked at the photos

available here? How many surgeries has your older son had? I would be

interest in seeing pictures if possible.

--- In blepharophimosis , " mrf871 " <mfeichtner@c...>

wrote:

> Hi everyone...my name is and i have 2 children with, what i

> now know, is blepharophimosis. I myself had surgery when i was a

> child. I have been told for many, many years that what we had was

> ptosis until today. I took my youngest son Garrett, who just

turned

> 5 last week, in for pre-op measurements with the surgeon. I was

> telling him that i found a group online for ptosis and that there

> weren't many people on it. He then tells me that what my family

has

> is't ptosis, but blepharophimosis. I couldn't believe that after

all

> this time they're telling me it's not ptosis. My oldest will be 10

> in September and he has had all of his surgies and looks absolutely

> amazing. You can't see any scars, and if you didn't know him prior

> to his surgies you wouldn't even know that he had something wrong.

> Garrett on the other hand has a more severe case than Austin did.

> When he was born it took him 3 wks just to be able to open his

eyes,

> and it was only one eye at a time. When he was 4 months old he had

a

> temporary suture sling put in so that he wouldn't end up blind.

He's

> had very poor vision since he was 1½ yrs. old. Been wearing

glasses

> since then and his prescription changes every 3 months. I guess

i'm

> just being paranoid, but the eye doctor doesn't seem to concerned

> that his prescription gets worse that often. Anyway, Garrett is

> scheduled for his first " permanent " surgery on Aug. 29. I'm glad i

> found this group, even though i've been on the ptosis group for

> awhile. I'm hoping i can learn alot about blepharophimosis from

this

> group since i was denied the correct diagnosis for so long. I'm

well

> up to speed on the ptosis issue...LOL

>

> Cincinnati, OH

July 31, 2003

My husband and I both feel that they waited too long to do surgery when he

had his first suture sling. Garrett's vision is sooo bad, i'm afraid he's

going to be blind before he gets into high school. Right now his lenses on

his glasses are thicker than the frames. I have looked at the pictures on

the group. Even after looking at them i think Garrett's eyes are smaller

than the children in the pictures. My oldest only had to have 2 surgeries

for his eyes. Garrett has had the one when he was 4 months old and he also

had surgery for Duane's Retraction Syndrome about a year and a half ago.

According to the surgeon he's only going to need the surgery in August plus

one more. I have trying to talk my husband into getting me a new scanner,

but he feels there are more important things to spend money on...like a new

pair a Nike's for himself amongst other things he feels he needs. When i

went to scan pictures of the boys for the Ptosis group it didn't work. I'm

going to do my best to try and get one and you guys will be the first that i

scan pictures for. Thanks

July 31, 2003

My name is I am Spanish and the father of a 4-years old girl with

Bleph. As bleph is a very rare condition in my city there are not surgeons

with enough experience in this disease. I would like to know where your son

have had his surgeries and how contact with your doctor. Thanks.

>From: " Feichtner " <mfeichtner@...>

>Reply-blepharophimosis

><blepharophimosis >

>Subject: Re: blepharophimosis Re: New to group

>Date: Wed, 30 Jul 2003 16:20:41 -0700

>

>My husband and I both feel that they waited too long to do surgery when he

>had his first suture sling. Garrett's vision is sooo bad, i'm afraid he's

>going to be blind before he gets into high school. Right now his lenses on

>his glasses are thicker than the frames. I have looked at the pictures on

>the group. Even after looking at them i think Garrett's eyes are smaller

>than the children in the pictures. My oldest only had to have 2 surgeries

>for his eyes. Garrett has had the one when he was 4 months old and he also

>had surgery for Duane's Retraction Syndrome about a year and a half ago.

>According to the surgeon he's only going to need the surgery in August plus

>one more. I have trying to talk my husband into getting me a new scanner,

>but he feels there are more important things to spend money on...like a new

>pair a Nike's for himself amongst other things he feels he needs. When i

>went to scan pictures of the boys for the Ptosis group it didn't work. I'm

>going to do my best to try and get one and you guys will be the first that

>i

>scan pictures for. Thanks

>

_________________________________________________________________

Dale vida a tu correo. Con MSN 8 podrás incluir fotos y textos increibles.

http://join.msn.com/?pgmarket=es-es & XAPID=517 & DI=1055

July 31, 2003

My sons surgeon is named Dr. Dwight Kulwin. He is located at the Cincinnati

Eye Institute in Ohio. He did an amazing job on my oldest son.

January 6, 2005

Hello Nieema,

We are all pleased to welcome you to Sickbuildings.

Please do ask all the questions possible...we have many who

are wise in the conditions that occur where mold issues are.

But always remember that mold is not the only cause of a

sickbuilding. We just had an experience with Environmental

Tobacco Smoke. Where the heating system was badly

contaminated. An apartment we rented here in Wisconsin.

We previously lived in the state of Georgia where it was hot

and wet! Our home was a mold haven.

Tried to remediate it but the battle was lost since I would

have needed to burn it to the ground to get all the spores.

So difficult to leave all our goods and sell off what we could.

We did find mold growing on some things we brought to

Wisconsin. Can't do much with books and papers except

seal them up and hope we never need them for taxes etc.

Used to go to a different Nederland...located in the mountains

west of Denver, Colorado. Very scenic place.

Fireplaces are at times nice to sit in front of and it will be missed.

Some of your sensitivities will change in the next month.

You may go to a new level of awareness. It would be good to

keep a diary of happenings and sensitivities.

May you enjoy many good messages and share with us too.

Bryce

nieema <nieema0@...> wrote:

Greetings

my name is nieema

I just joined and was looking thru much of the information posted and

I see that this is a very well informed group.

Just a small intro.

I have diabetes with Candida and I live in the Nederlands and have a

very severe mold/mildew problem.

We hope we will be lucky and have our roof repaired and that will take

care of the many problems in the home.

That still leaves the fact that we are in a very wet area living here.

We were using our fireplace because it is soo nice...after I read a

few posts to my husband, he has stated that we are going to stop using

it al together.

We had not a clue that there are gases being given off. Talk about

creating a sick building. See you folks have helped already :-)

I look forward to learning from you all, with all that is going on in

my life, we need all the help we can get.

Oh yes, I looked around, I saw a file on Candida and see that it is

empty. Is there information going into the file at some time?

Good health to all and the means to maintain it!

nieema

FAIR USE NOTICE:

This site contains copyrighted material the use of which has not always been

specifically authorized by the copyright owner. We are making such material

available in our efforts to advance understanding of environmental, political,

human rights, economic, democracy, scientific, and social justice issues, etc.

We believe this constitutes a 'fair use' of any such copyrighted material as

provided for in section 107 of the US Copyright Law. In accordance with Title 17

U.S.C. Section 107, the material on this site is distributed without profit to

those who have expressed a prior interest in receiving the included information

for research and educational purposes. For more information go to:

http://www.law.cornell.edu/uscode/17/107.shtml. If you wish to use copyrighted

material from this site for purposes of your own that go beyond 'fair use', you

must obtain permission from the copyright owner.

---------------------------------

January 6, 2005

Welcome Nieema,

We are glad that you found this group, but sorry it is under these

conditions. There are some really great and informative people here

that are always willing to help others.

My wife has severe chemical sensitivity and we also have a

fireplace, but the one difference is that we have an insert in it

and no wood is kept in the home. As soon as it is brought in it is

placed in the fireplace. We are also are very cautious on the wood

we burn, if it is moldy it does not come into the house.

KC

>

> Greetings

>

> my name is nieema

>

> I just joined and was looking thru much of the information posted

and

> I see that this is a very well informed group.

>

> Just a small intro.

>

> I have diabetes with Candida and I live in the Nederlands and have

a

> very severe mold/mildew problem.

> We hope we will be lucky and have our roof repaired and that will

take

> care of the many problems in the home.

> That still leaves the fact that we are in a very wet area living

here.

>

> We were using our fireplace because it is soo nice...after I read a

> few posts to my husband, he has stated that we are going to stop

using

> it al together.

> We had not a clue that there are gases being given off. Talk about

> creating a sick building. See you folks have helped already :-)

>

> I look forward to learning from you all, with all that is going on

in

> my life, we need all the help we can get.

>

> Oh yes, I looked around, I saw a file on Candida and see that it is

> empty. Is there information going into the file at some time?

>

> Good health to all and the means to maintain it!

>

> nieema

>

> FAIR USE NOTICE:

>

> This site contains copyrighted material the use of which has not

always been specifically authorized by the copyright owner. We are

making such material available in our efforts to advance

understanding of environmental, political, human rights, economic,

democracy, scientific, and social justice issues, etc. We believe

this constitutes a 'fair use' of any such copyrighted material as

provided for in section 107 of the US Copyright Law. In accordance

with Title 17 U.S.C. Section 107, the material on this site is

distributed without profit to those who have expressed a prior

interest in receiving the included information for research and

educational purposes. For more information go to:

http://www.law.cornell.edu/uscode/17/107.shtml. If you wish to use

copyrighted material from this site for purposes of your own that go

beyond 'fair use', you must obtain permission from the copyright

owner.

>

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

>

January 6, 2005

Good evening KC

We are on the edge of a large snow storm....that fireplace

would be nice as we watch the big flakes fall.

Ruth and I enjoyed several homes in the past where we had

fireplaces. Always seemed to have smoke as we made fires.

The draw was bad etc. But once hot it worked fine.

Wonderful memories!

Not today tho!

Call you soon...!

Bryce

tigerpaw2c <tigerpaw2C@...> wrote:

Welcome Nieema,

We are glad that you found this group, but sorry it is under these

conditions. There are some really great and informative people here

that are always willing to help others.

My wife has severe chemical sensitivity and we also have a

fireplace, but the one difference is that we have an insert in it

and no wood is kept in the home. As soon as it is brought in it is

placed in the fireplace. We are also are very cautious on the wood

we burn, if it is moldy it does not come into the house.

KC

>

> Greetings

>

> my name is nieema

>

> I just joined and was looking thru much of the information posted

and

> I see that this is a very well informed group.

>

> Just a small intro.

>

> I have diabetes with Candida and I live in the Nederlands and have

a

> very severe mold/mildew problem.

> We hope we will be lucky and have our roof repaired and that will

take

> care of the many problems in the home.

> That still leaves the fact that we are in a very wet area living

here.

>

> We were using our fireplace because it is soo nice...after I read a

> few posts to my husband, he has stated that we are going to stop

using

> it al together.

> We had not a clue that there are gases being given off. Talk about

> creating a sick building. See you folks have helped already :-)

>

> I look forward to learning from you all, with all that is going on

in

> my life, we need all the help we can get.

>

> Oh yes, I looked around, I saw a file on Candida and see that it is

> empty. Is there information going into the file at some time?

>

> Good health to all and the means to maintain it!

>

> nieema

>

> FAIR USE NOTICE:

>

> This site contains copyrighted material the use of which has not

always been specifically authorized by the copyright owner. We are

making such material available in our efforts to advance

understanding of environmental, political, human rights, economic,

democracy, scientific, and social justice issues, etc. We believe

this constitutes a 'fair use' of any such copyrighted material as

provided for in section 107 of the US Copyright Law. In accordance

with Title 17 U.S.C. Section 107, the material on this site is

distributed without profit to those who have expressed a prior

interest in receiving the included information for research and

educational purposes. For more information go to:

http://www.law.cornell.edu/uscode/17/107.shtml. If you wish to use

copyrighted material from this site for purposes of your own that go

beyond 'fair use', you must obtain permission from the copyright

owner.

>

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

>

March 16, 2005

Dear Lynne,

Sorry to hear about your pneumonia. I have heard of three other Non-

CML people struggling with varying degrees of pneumonia in recent

weeks. Strange! It can be quite scary. Does your Onc think that

there is a connection to the CML? I had not heard of it being more

common among CML'ers. You are in my thoughts and prayers. Take care

of yourself and get better soon!

~ in MI

March 17, 2005

Hi,

I have had pneumonia twice since being diagnosed 5+ years ago. But

neither time was severe and antibiotics worked well. Could be purely

coincidental; I don't know. I do have chronic sinus infections and don't

know if that's related at all to pneumonia.

jennifer g.

=======================================

You can make a difference today in the life of a cancer patient

tomorrow.

Please support the Leukemia Society with your donation:

http://www.cmlsupport.com/seejenrun.htm

=======================================

[ ] Re: New to group

Dear Lynne,

Sorry to hear about your pneumonia. I have heard of three other Non-

CML people struggling with varying degrees of pneumonia in recent

weeks. Strange! It can be quite scary. Does your Onc think that

there is a connection to the CML? I had not heard of it being more

common among CML'ers. You are in my thoughts and prayers. Take care

of yourself and get better soon!

~ in MI

March 17, 2005

Hi Lynne,

You've probably gotten a lot more informatiion concerning your pneumonia by

now - your counts, etc - but if not, I want to reassure you that getting an

infection such as this isn't likely to indicate loss of your cytogenetic

and/or hematologic response. It takes quite a lot of progression (or

relapse) of CML for the immune system to be much disrupted; and conversely,

anyone can get pneumonia, especially if they have a history of asthma (which

I'm inferring, with you being on albuteral?).

I hope you find this group a bit calmer. I hope we all do. Thanks again,

Amy, for starting it. With so many people having CML, and our living long

enough and feeling well enough to share our questions and experiences with

others, it strikes me as quite natural that more groups should form over

time, rather than all of us remaining part of one mega group. Maybe it;s a

good thing, too: each listserv is likely to develop its own distinct

character, and while this may newly diagnosed patients at first, over time

each can settle into a group that suits their temperament. My one regret is

that we don't share scientific findings and analyses more readily among all

the groups. Maybe over time we can remedy this - though probably not right

away, as each time one group splits off from another, quite a lot of

bitterness remains. Sort of like a divorce, I guess.

Enough rambling. Good night,

R

> Date: Wed, 16 Mar 2005 13:37:12 -0000

> From: " boohoogrl " <MoonQn1@...>

> Subject: New to group

>

> Hi, Old CMLer new to this group. Lynne A. checking in here, thanks

> to C.'s recommendation. I want to find a " quiet " forum because

> I am not feeling my best lately and hope I can find some supportive

> members to share with.

> I have my first case of pneumonia since CML and am very worried. I

> have been to doctor's but my oncologist never called til it was too

> late in the day to get my counts done there, but I am on Levaquin, in

> bed (5 days now) and inhaling Albuteral. I am very, very scared. I

> remember asking group members to sign in when we are very sick on the

> other sites, so I am doing the same.

> I hope to see my oncologist tomorrow morning for blood counts.

> I just wanted to ask out there if anyone else has recently lost their

> hematological remission and then gotten pneumonia?

> Is this cause for me to be worried? Thanks, Lynne

May 5, 2005

> hi, i am new to this group just wanted to say a little about myself.

i

> was diagnosed in mar ch of this year and have been on gleevec ever

> since.i am 33 years old, my husband and family have been wonderful

> through this entire process buti just needed some outside support

also

> and i wanted to meet some new friends in the same situation i am in.

May 5, 2005

Welcome !

I am sorry about your diagnosis, but you have come to the right

place. There are some very knowledgeable and generous people on this

list that will answer any question you may have. Where are you from?

Can you tell us a little about yourself?

The best place to look for initial CML information is in the files

section of this site, and then check out www.cmlsupport.com if you

have not already.

I live in Michigan, and was dxed 12/01 at age 29. My first (only)

baby was 4 months old at the time and now she is nearly 4 years old.

I have had an ideal response to Gleevec so far and have been on it

for 3.5 years. Just turned 33 and couldn't be happier that I am as

healthy and happy as can be (given that fateful day in 12/01). I am

a 10+ year survivor of Hodgkins disease as well, so I know more than

my share about being on the patient side of oncology.

Anyway - welcome and feel free to pose any questions that come up.

Or else just vent away at all the things you may not feel

comfortable sharing with your loved ones. We've been there.

~ in MI

Gleevec 400mg since 1/02

CCR since 5/02

PCRU since 9/02 and holding

May 5, 2005

Welcome! this has been a wonderful source of strength for me.

[ ] new to group

hi, i am new to this group just wanted to say a little about myself. i

was diagnosed in mar ch of this year and have been on gleevec ever

since.i am 31 years old, my husband and family have been wonderful

through this entire process buti just needed some outside support also

and i wanted to meet some new friends in the same situation i am in.

------------------------------------------------------------------------------

May 5, 2005

> Welcome !

> I am sorry about your diagnosis, but you have come to the right

> place. There are some very knowledgeable and generous people on

this

> list that will answer any question you may have. Where are you

from?

> Can you tell us a little about yourself?

>

> The best place to look for initial CML information is in the files

> section of this site, and then check out www.cmlsupport.com if you

> have not already.

>

> I live in Michigan, and was dxed 12/01 at age 29. My first (only)

> baby was 4 months old at the time and now she is nearly 4 years

old.

> I have had an ideal response to Gleevec so far and have been on it

> for 3.5 years. Just turned 33 and couldn't be happier that I am as

> healthy and happy as can be (given that fateful day in 12/01). I am

> a 10+ year survivor of Hodgkins disease as well, so I know more

than

> my share about being on the patient side of oncology.

>

> Anyway - welcome and feel free to pose any questions that come up.

> Or else just vent away at all the things you may not feel

> comfortable sharing with your loved ones. We've been there.

>

> ~ in MI

> Gleevec 400mg since 1/02

> CCR since 5/02

> PCRU since 9/02 and

holding

well like said i am 33 i live in n.c. i have 2 wonderful kids

quite a bit older than yours 17 and almost 15 as of june. it sounds

like you have been through the ringer, i have to i had a massive

stroke 2 years ago this past april and havent been in good health

since on alot of medication up until that point just as healthy as i

could be....... now i have added one more medicine to the list but i

am not complaining i am still here to enjoy my life and my family. i

hope to get alot of info on this site.

September 29, 2005

----- Original Message -----

From: Agney Grace<mailto:mrfrank@...>

gallstones <mailto:gallstones >

Sent: Wednesday, September 28, 2005 11:42 AM

Subject: New to group

Hi. I am a bit overwhelmed at the moment. I have been in pain for

over two weeks, supposedly with a gall bladder attack, but then I had

shingles (right side) diagnosed on top of that. The shingles are

improving each day, but the gall bladder pain is worse, despite the

fact that I'm on codeine plus tylenol. I live in fear of the day

when the doctor says I can't have any more pain killers.

-Bee propolis tincture has been shown to be 95% effective in reducing

both the pain and subsequent neuralgia of shingles. The sooner applied after

the onset of blisters the more effective. Unfortunately while the codiene

supresses the pain it also is congestive of both liver/gallbladder and

intestinal peristalsis.

The doc wants me to see a surgeon about having my gallbladder

removed. My environmental illness doctor said the same thing after

looking at the ultrasound. All I had done for diagnostics was an

ultrasound. That showed an enlarged/dilated gallbladder, but no

stones, and some other duct that could have been dilated was not. My

bloodwork is supposedly fine, including my white blood count.

I don't know what to do next. Should I see a naturopath, or another

doctor who is more wholistically inclined? My HMO seems pointless,

so anybody else I see would have to be paid by me. Needless to say,

I don't have money to try lots of things, and need to know the best

things to do. Oh, I had two acupuncture treatments this week, but

they helped the shingles, not the gallbladder pain.

Years ago (15-20?) I did one gallbladder flush and I really didn't

notice any effects, so I never tried another one. Would a naturopath

be likely to know about flushes? Being in chronic pain, I'm hesitant

to try flushes again without some local supervision.

-More likely to know about but not too likely to recommend.You may find

smooth muscle relaxing herbs and magnesium to help reduce the spasm. If you

don't have a lot to spend try the archives of this group; you will read tales of

many others as bad off as you who were successful on their own.

What would you recommend for the next step? I really don't want to

lose my gallbladder.

-No stones showing is a great thing. You need to decide the next step.

As for food, I think maybe too much fat was the culprit, as I was on

a kind of modified Zone Diet. I say modified, because I've been a

vegetarian for 30 years, and refuse to eat flesh foods. Therefore, I

had started eating cheeses more the last few years, as a protein

source. Now I want to go back to the near-vegan diet I'd been on for

the 20 years (before about the last 4-5 when I was doing the

modified Zone diet).

I don't drink or smoke. I do some supplements. I have a history of

aspirin abuse, due to chronic migraines, but as of three weeks ago

I'm finally off aspirin and will never do it again. I told my doctor

I thought my stomach was the problem, as the " gallbladder " pain would

always start after an aspirin, or after caffeine (I'm now off that

forever, too). But the pain is/was always in the area under my right

rib, which is why she thinks it is gallbladder (that and the

ultrasound showing it is dilated).

Right now the pain gets bad in the gallbladder area at night, when

I'm in bed. It wakes me up and the codeine doesn't do enough to keep

it at bay. Then when I get up and out of bed, most of the pain moves

to my upper right shoulder-blade area, though some of it stays in the

gallbladder area.

I guess I need to know what to do next. I tried castor oil packs the

first week--I will try those again. Why would I have so much pain if

there is no sign of stones? The pain is my big issue right now, that

and wanting to do what I have to do to avoid surgery.

-Definitely sounds like gallbladder pain; above suggestions and archives

may offer relief. Again: No stones=good thing. Castor oil pacts also good.

Flushing might be a logical approach. Good luck

All suggestions, comments welcome. I have skimmed through the files

and will read them more thoroughly after work.

Thanks.

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September 29, 2005

Dave,

What are some " smooth muscle relaxing herbs " ?

Dave Shelden wrote:

>

> -More likely to know about but not too likely to recommend.You

> may find smooth muscle relaxing herbs and magnesium to help reduce the

> spasm. If you don't have a lot to spend try the archives of this

> group; you will read tales of many others as bad off as you who were

> successful on their own.

>

October 1, 2005

wild cherry bark, jamaican dogwood bark, apricot pit, valerian, lobelia

----- Original Message -----

From: R. <mailto:mrfrank@...>

gallstones <mailto:gallstones >

Sent: Thursday, September 29, 2005 1:22 PM

Subject: Re: New to group

Dave,

What are some " smooth muscle relaxing herbs " ?

Dave Shelden wrote:

You

> may find smooth muscle relaxing herbs and magnesium to help reduce the

> spasm.

February 22, 2006

Hi heather,

This is a perfect example of " If we cannot see it, then it must not exist. "

Your symptoms are liver/gallbladder. How did they determine you have acid

reflux from sending a camera down? Careful about that little purple pill, it

won't take care of the problem, just mask the symptom. You might want to think

about finding another type of health professional that can help you deal with

the digestive problems. Meanwhile working on your liver and gallbladder will be

helpful with the right side pains. Always, in all ways, -Dave

----- Original Message -----

From: darioneight<mailto:Hilldanheather@...>

gallstones <mailto:gallstones >

Sent: Tuesday, February 21, 2006 5:39 AM

Subject: New to group

Hi,My name is .I am a 30 yr old mother of three.I just recently

joined the group and have spent some time reading posts.I would like to

share my story in hopes that some of you may give some input on whether

or not you have had any of the same symptoms.A little over a yr ago I

started having discomfort below my lower right rib.I was also suffering

from heartburn at the time.In time the pain became more severe and

spread to my lower back and right shoulder.I had been to the doctor for

something else when i mentioned what was going on she said it sounds

like your gallbladder.She sent me for an ultrasound of my gb.The

technician told me that my results were sent right to the dr and that

if i didnt hear from them by the next morning to make sure i

called.Five days later i finally got a call back and said it looked

fine and asked if I was still in pain.I was so I was sent to a gi

doc.They also said it sounded like gb but since my ultrasound was

normal (only because i told him what other doc said)he wanted to go

down my throat with a camera.He found I had acid reflux and a hiatal

hernia.Since then I have been on nexium and many other stomach meds.I

still have heartburn although the heartburn attacks themselves are not

as bad.The pain in my side continues.sometimes i go a week or two

without it other times it lasts for days.I am at a point right now

where it has been for days.I am also starting to get burning on left

side under ribs.I know this is long and I apologize for that but I

really hope some of you will write back and let me know if my story

sounds familiar.Thank you for your time-------------

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February 22, 2006

hi heather,

i wad " diagnosed " with gerd at the age of like 16, they did the endoscopy on me

then too (the camera down the throat). but that was just to check for ulcers or

anything....nothing..just inflammation..i took prilosec for 3 months and i was

fixed. of course in high school you have to eat taco bell everyday for lunch bc

of peer pressure..

i recently had the heartburn come back and went back on prilosec but it didn't

do anything. last week i started taking 1 spoon of apple cider vinegar (the

braggs brand) everyday before lunch, my " heaviest " meal. the taste is horrible

and i down it with a whole glass of water. i've noticed that i don't feel the

burning feeling in my throat and my breath doesn't smell like barf anymore... it

can't do you any harm so i say give it a try! drink lots of water too, and don't

eat late at all and lay down afterwards...that's the WORST thing for heartburn

at night!

best

shefy

Dave Shelden <wholehealthawareness@...> wrote: Hi heather,

This is a perfect example of " If we cannot see it, then it must not

exist. " Your symptoms are liver/gallbladder. How did they determine you have

acid reflux from sending a camera down? Careful about that little purple pill,

it won't take care of the problem, just mask the symptom. You might want to

think about finding another type of health professional that can help you deal

with the digestive problems. Meanwhile working on your liver and gallbladder

will be helpful with the right side pains. Always, in all ways, -Dave