New to group

[Guest guest]

Well raw beet juice is known as a cureall for any hepatical condition.

It also regulates bp, eventually dissolves gall and kidney stones,

detoxes the liver.

you have to drink it every 30-60 minutes for 12 hours. Its SUPER

powerful you might feel a herxheimer reaction but you have to drink

it frequently though the day, 1 or 2 doses don't help as much I find.

Betaine is a great liver detoxifier.

If you feel really crappy you can take a day off.

Also combo this with dandelion and milk thistle.

Hope that helps,

Brad

>

>

>

> > I am new to this group. Reading lots of messages with little

>

> > information.

>

> > Is there some message which gives the protocol for a liver flush? Also

>

> > some message which describes the dissolution of the stones? Who is the

>

> > moderator for this group? Could you post this information somewhere

>

> > where new members could go directly to it?

>

> > Thanks very much. Savvy

>

> >

>

> >

>

> >

>

>

>

>

[Guest guest]

Sometimes the medical establishment admitting they have little to offer opens

up more lucid opportunities. This is not the kind of thing to attempt to manage

over the internet though. Got to find a qualified practitioner in your area

that can help you through this. Where in the world are you Tom?

-D

Re: New to Group

Looking for treatment for Primary Sclerosing Cholangitis. Medical field

doesn't offer anything much, maybe stage II. 32 yr old male. The Dr can't tell

us what damage has been done, unless they do a liver biospy, which they say is

too dangerous, so it like ok, how do we know what to pursue if it is only stage

II, or stageI, or what, very limited info from them on treatment.

Thanks

Tom

> I am new to this group. Reading lots of messages with little

> information.

> Is there some message which gives the protocol for a liver flush? Also

> some message which describes the dissolution of the stones? Who is the

> moderator for this group? Could you post this information somewhere

> where new members could go directly to it?

> Thanks very much. Savvy

>

>

>

[Guest guest]

If you are in California I know of a practitioner who may be able to

help you with this Tom.

Best of luck

On Feb 9, 2009, at 9:08 PM, Dave Shelden wrote:

> Sometimes the medical establishment admitting they have little to

> offer opens up more lucid opportunities. This is not the kind of

> thing to attempt to manage over the internet though. Got to find a

> qualified practitioner in your area that can help you through this.

> Where in the world are you Tom?

> -D

> Re: New to Group

>

> Looking for treatment for Primary Sclerosing Cholangitis. Medical

> field doesn't offer anything much, maybe stage II. 32 yr old male.

> The Dr can't tell us what damage has been done, unless they do a

> liver biospy, which they say is too dangerous, so it like ok, how do

> we know what to pursue if it is only stage II, or stageI, or what,

> very limited info from them on treatment.

> Thanks

> Tom

>

>

>

> > I am new to this group. Reading lots of messages with little

>

> > information.

>

> > Is there some message which gives the protocol for a liver flush?

> Also

>

> > some message which describes the dissolution of the stones? Who is

> the

>

> > moderator for this group? Could you post this information somewhere

>

> > where new members could go directly to it?

>

> > Thanks very much. Savvy

>

> >

>

> >

>

> >

>

>

[Guest guest]

does he deal with PSC (primary sclerosing cholangitis), and will he correspond?

Thanks

>

> > I am new to this group. Reading lots of messages with little

>

> > information.

>

> > Is there some message which gives the protocol for a liver flush?

> Also

>

> > some message which describes the dissolution of the stones? Who is

> the

>

> > moderator for this group? Could you post this information somewhere

>

> > where new members could go directly to it?

>

> > Thanks very much. Savvy

>

> >

>

> >

>

> >

>

>

[Guest guest]

St. Louis, Mo area. What I'm trying to do is research the options. I'm more

familiar with cancer alternatives than this. So asking for info from internet is

sifted thru research, not going to by the firsy " coffee enema " offered.

Tom

> I am new to this group. Reading lots of messages with little

> information.

> Is there some message which gives the protocol for a liver flush? Also

> some message which describes the dissolution of the stones? Who is the

> moderator for this group? Could you post this information somewhere

> where new members could go directly to it?

> Thanks very much. Savvy

>

>

>

[Guest guest]

Hi Tom,

Understand. Obviously this is not just about detox. Since you are

familiar with cancer alternatives you obviously have been thrown into the arena

before this. Was the cancer situation yours? If so, did you receive chemo?

Email me off group and I can give you some ideas, but again this is not the type

of thing to attempt to handle over the airwaves. It should be with some type of

practitioner who rally understands the problem and works with you in person.

Sorry, do not know of anyone in the St. Louis area. -D

Re: New to Group

St. Louis, Mo area. What I'm trying to do is research the options. I'm more

familiar with cancer alternatives than this. So asking for info from internet is

sifted thru research, not going to by the firsy " coffee enema " offered.

Tom

> I am new to this group. Reading lots of messages with little

> information.

> Is there some message which gives the protocol for a liver flush? Also

> some message which describes the dissolution of the stones? Who is the

> moderator for this group? Could you post this information somewhere

> where new members could go directly to it?

> Thanks very much. Savvy

>

>

>

[Guest guest]

You guys would wana visit the llink below for some nice herbal products

directly from India.

http://divyayoga.com/main.htm

On Tue, Feb 10, 2009 at 11:19 AM, Dave Shelden <wholehealthawareness@...

> wrote:

> Hi Tom,

>

> Understand. Obviously this is not just about detox. Since you are familiar

> with cancer alternatives you obviously have been thrown into the arena

> before this. Was the cancer situation yours? If so, did you receive chemo?

> Email me off group and I can give you some ideas, but again this is not the

> type of thing to attempt to handle over the airwaves. It should be with some

> type of practitioner who rally understands the problem and works with you in

> person. Sorry, do not know of anyone in the St. Louis area. -D

>

> Re: New to Group

>

> St. Louis, Mo area. What I'm trying to do is research the options. I'm more

> familiar with cancer alternatives than this. So asking for info from

> internet is sifted thru research, not going to by the firsy " coffee enema "

> offered.

> Tom

>

>

>

> > I am new to this group. Reading lots of messages with little

>

> > information.

>

> > Is there some message which gives the protocol for a liver flush? Also

>

> > some message which describes the dissolution of the stones? Who is the

>

> > moderator for this group? Could you post this information somewhere

>

> > where new members could go directly to it?

>

> > Thanks very much. Savvy

>

> >

>

> >

>

> >

>

>

[Guest guest]

He will do or has done telephone consultations if u would like his

contact info email me directly

good luck

FB

On Feb 10, 2009, at 5:30 AM, Tom Plank wrote:

> St. Louis, Mo area. What I'm trying to do is research the options.

> I'm more familiar with cancer alternatives than this. So asking for

> info from internet is sifted thru research, not going to by the

> firsy " coffee enema " offered.

> Tom

>

>

>

> > I am new to this group. Reading lots of messages with little

>

> > information.

>

> > Is there some message which gives the protocol for a liver flush?

> Also

>

> > some message which describes the dissolution of the stones? Who

> is the

>

> > moderator for this group? Could you post this information somewhere

>

> > where new members could go directly to it?

>

> > Thanks very much. Savvy

>

> >

>

> >

>

> >

>

>

[Guest guest]

Hi Chris!

Our 12 year old son Jordan is the only one in our family with BPES and your description fits him to a "T". He has the extreme myopia (-12 to -14 diopters), light sensitivity and dryness you describe. So he has had the double whammy of "small eyes" and thick glasses from very early on.

He has had 4 surgeries - starting at 3 months and most recently last November - to deal with the BPES issues.

We just recently had him fitted for contact lenses and it has been difficult but wonderful. The lenses are hard, gas permeable, smaller than normal and custom made. They are not easy to put in due to his narrow eye openings. But his range and quality of vision is better and he feel less abnormal. For the first time, he is seeing 20-20.

We are hopeful that there will be a more permanent solution for him once his prescription stabilizes. We would be very interested to hear more about your vision correction and how you deal with the light sensitivity issue. We have been tuning into this site for about a year now and you are the first to post about BPES and extreme myopia / light sensitivity..

We look forward to hearing from you!

and Connie Zagerman

Philadelphia, PA USA

From: cdoherty77 <cdoherty77@...>Subject: blepharophimosis New to groupblepharophimosis Date: Monday, July 20, 2009, 3:00 PM

Hi AllI am new to this group. I am 47 yrs old and have bpes. I also have the dry eyes (and hence have done the eye salve at night since I was 4 or 5) , sensitivity to light and very high myopia. The high degree of near sightedness has caused me to have myopic degeneration which is a form of macular degeneration. I am curious how many others have both bpes and high myopia? I have 2 siblings, no one else in the family has it so I know what it is like to grow up alone with it. I have two kids and they do not have it either. Parents (or anyone for that matter), pls feel free to email me to get a kids perspective on growing up with it.-Chris

[Guest guest]

Hi

Just wondering, which part of the world do you come from?

-Machaela (australia)

From: cdoherty77 <cdoherty77@...>Subject: blepharophimosis New to groupblepharophimosis Received: Tuesday, 21 July, 2009, 1:00 AM

Hi AllI am new to this group. I am 47 yrs old and have bpes. I also have the dry eyes (and hence have done the eye salve at night since I was 4 or 5) , sensitivity to light and very high myopia. The high degree of near sightedness has caused me to have myopic degeneration which is a form of macular degeneration. I am curious how many others have both bpes and high myopia? I have 2 siblings, no one else in the family has it so I know what it is like to grow up alone with it. I have two kids and they do not have it either. Parents (or anyone for that matter), pls feel free to email me to get a kids perspective on growing up with it.-Chris

Access 7 Mail on your mobile. Anytime. Anywhere. Show me how.

[Guest guest]

I am in the Boston MA area.

-Chris

>

>

> From: cdoherty77 <cdoherty77@...>

> Subject: blepharophimosis New to group

> blepharophimosis

> Received: Tuesday, 21 July, 2009, 1:00 AM

>

>

>  

>

>

>

> Hi All

>

> I am new to this group. I am 47 yrs old and have bpes. I also have the dry

eyes (and hence have done the eye salve at night since I was 4 or 5) ,

sensitivity to light and very high myopia. The high degree of near sightedness

has caused me to have myopic degeneration which is a form of macular

degeneration. I am curious how many others have both bpes and high myopia? I

have 2 siblings, no one else in the family has it so I know what it is like to

grow up alone with it. I have two kids and they do not have it either. Parents

(or anyone for that matter), pls feel free to email me to get a kids perspective

on growing up with it.

>

> -Chris

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

________________________________________________________________________________\

____

> Access 7 Mail on your mobile. Anytime. Anywhere.

> Show me how: http://au.mobile./mail

>

[Guest guest]

My eyes are really small as well. This after my syrgerys. I look at the

pictures posted to this group and am amazed at how great the eyes came out. My

eyes were very small horizontally as well as vertically. But, my surgery's were

done in the early 60s. Sorry to hear your son is a high myope. For me, the

extereme myopia was way worse than the BPES itself. The good news is the

technologies today for getting the vision up and dealing with the retinal issues

is fantastic. Nothing was available to me in the 60s and 70s.

I have a lot to say about high myopia. Feel free to email me offline for my

phone number.

Chris

Boston MA

--- In blepharophimosis , " Feichtner " <mfeichtner@...>

wrote:

>

> 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

>

>

>

[Guest guest]

Hi / Connie

Did you get my off line reply to thispost?

-Chris

Boston, MA

>

>

> From: cdoherty77 <cdoherty77@...>

> Subject: blepharophimosis New to group

> blepharophimosis

> Date: Monday, July 20, 2009, 3:00 PM

>

>

>  

>

>

>

> Hi All

>

> I am new to this group. I am 47 yrs old and have bpes. I also have the dry

eyes (and hence have done the eye salve at night since I was 4 or 5) ,

sensitivity to light and very high myopia. The high degree of near sightedness

has caused me to have myopic degeneration which is a form of macular

degeneration. I am curious how many others have both bpes and high myopia? I

have 2 siblings, no one else in the family has it so I know what it is like to

grow up alone with it. I have two kids and they do not have it either. Parents

(or anyone for that matter), pls feel free to email me to get a kids perspective

on growing up with it.

>

> -Chris

>

[Guest guest]

Hello, can you tell me please what is Myopia?

Clare

Herts UK

From: cdoherty77 <cdoherty77@...>Subject: blepharophimosis Re: New to groupblepharophimosis Date: Monday, 3 August, 2009, 4:19 PM

My eyes are really small as well. This after my syrgerys. I look at the pictures posted to this group and am amazed at how great the eyes came out. My eyes were very small horizontally as well as vertically. But, my surgery's were done in the early 60s. Sorry to hear your son is a high myope. For me, the extereme myopia was way worse than the BPES itself. The good news is the technologies today for getting the vision up and dealing with the retinal issues is fantastic. Nothing was available to me in the 60s and 70s. I have a lot to say about high myopia. Feel free to email me offline for my phone number.ChrisBoston MA>> 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> > >

[Guest guest]

Hi Chris- Which part of Boston do you live in? Iam a mother of 5 w / 2 children that have BPES, 1 girl and 1 boy?

a J. CrowleyFrom: "cdoherty77" <cdoherty77@...>blepharophimosis Sent: Monday, August 3, 2009 11:19:19 AM GMT -05:00 US/Canada EasternSubject: blepharophimosis Re: New to group

My eyes are really small as well. This after my syrgerys. I look at the pictures posted to this group and am amazed at how great the eyes came out. My eyes were very small horizontally as well as vertically. But, my surgery's were done in the early 60s. Sorry to hear your son is a high myope. For me, the extereme myopia was way worse than the BPES itself. The good news is the technologies today for getting the vision up and dealing with the retinal issues is fantastic. Nothing was available to me in the 60s and 70s. I have a lot to say about high myopia. Feel free to email me offline for my phone number.ChrisBoston MA>> 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> > >

[Guest guest]

CHRIS!!!!!!!!!!!!! I am from boston too!!!!!!!!! Where abouts? I have BPES, 30

y/o, type 1

> >

> >

> > From: cdoherty77 <cdoherty77@>

> > Subject: blepharophimosis New to group

> > blepharophimosis

> > Received: Tuesday, 21 July, 2009, 1:00 AM

> >

> >

> >  

> >

> >

> >

> > Hi All

> >

> > I am new to this group. I am 47 yrs old and have bpes. I also have the dry

eyes (and hence have done the eye salve at night since I was 4 or 5) ,

sensitivity to light and very high myopia. The high degree of near sightedness

has caused me to have myopic degeneration which is a form of macular

degeneration. I am curious how many others have both bpes and high myopia? I

have 2 siblings, no one else in the family has it so I know what it is like to

grow up alone with it. I have two kids and they do not have it either. Parents

(or anyone for that matter), pls feel free to email me to get a kids perspective

on growing up with it.

> >

> > -Chris

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

________________________________________________________________________________\

____

> > Access 7 Mail on your mobile. Anytime. Anywhere.

> > Show me how: http://au.mobile./mail

> >

>

[Guest guest]

what do you eat?

From: Shara Makinson <shara2282@...>

Subject: New to group

gallstones

Date: Sunday, April 18, 2010, 4:07 PM

 

Hello all - I have been suffering from pain since August of 2009, and

intense, severe gallbladder attacks since December. I have been

misdiagnosed for the past 5 months with all manner of things. The GI doc

thinks that I have gallbladder problems - I am waiting on the results from

the ultrasound to see how bad it is. He is going to want to take my

gallbladder out L and I am scared. I have been in pain for so long, that

this sounds tempting. But I know that nothing is as simple as it sounds. I

used to only have pain after eating, now I have pain all the time, even when

I don't eat. Is there anything I can do to save my gallbladder? -shara

[Guest guest]

>

> Bruce,

> I am praying for you and sending you lots of hope and healing energy.

> Sheila

>

>

>

[Guest guest]

Hi,

I have a 12 yr old son who has severe asthma and has developed bad reactions to

inhaled steroids ( raises his serum creatine kinase levels which indicate severe

muscle breakdown). At the pulmo today, we discussed option at length as my son

keeps getting ill, which aggravates his asthma. he has missed 20 days of school

in this first semester alone.

The doctor mentioned Xolair as a possibility, since he tends toward high IgE.

However, after reading about it, i am very concerned. My son is also diagnosed

with Mitochondrial Dysfunction and as a result is very sensitive to medications

( i.e. if there is a side effect, he will usually have it!). I would very much

like to get feedback, good and bad, as to Xolair and it's use. I also see that

it is very expensive. Has anybody had trouble getting insurance to cover it?

Hoping to learn from those who have gone before....

Thanks

in Texas

[Guest guest]

I know for the Xolair study that we're getting ready to participate in, one

of the failure protocols is cancer or any drug to suppress cancer. I had

cervical cancer in September but haven't been on any chemo or radiation.

Hopefully they won't deny me because of it.

Best wishes in your surgery, Bruce... Please keep us updated on your

condition!!!!

In a message dated 1/1/2011 2:46:49 P.M. Eastern Standard Time,

patfogle@... writes:

Hope your surgery goes well.

Regarding Xolair - I was on it for about 6 months and at first I felt that

it was helping me but at the same time I started getting extreme fatique

and pain all over my body. It was an effort to get out of bed some days.

Immediately after getting the injection I would feel a little weird. Don't

know how to explain it - little short of breath perhaps but nothing major.

Also a bit anxious. The last time I had it I got very anxious and started

feeling not quite right - for about 15 minutes.

The doctor decided to take me off of it as he felt I was having some type

of reaction to it.

The achiness is gone. I feel like my old self once again. I'm just going

to stick with my asthma meds and try to be diligent with my allergy shots.

I am a life long asthmatic and at times it is severe but I've realized I

need to be more proactive when I feel myself getting sick.

Xolair helps for many people but I have to admit I'm worried about the

side effects of the drug.

Take care,

Patty

>

> Hello to all members

>

> I am to go into the hospital this Wednesday for a kidney removal

(cancer).

>

> I will be starting Xolair treatments in January 2011.

> Do you think this will be too soon after surgery?

>

> What side effects can I expect?

>

> I am so glad that this group is available.

>

> Thank you in advance for all your support.

>

> Bruce

> Virginia Beach, VA

>

[Guest guest]

That was something I noticed on Xolair ... the body pain. I had it before

Xolair but it seemed like it was more present on Xolair. I felt so bad most of

time (aches and pains and frequent upper respiratory infections). I envied

those people who seemed to miraculously spring to life because although the

breathing improved by maybe 50% and ultimately the sinus headaches improved by

80%, I felt so beat down. Thankfully, I never noticed any breathing problems

that I could attribute to Xolair, though, so I don't think I was in any way

having any sort of anaphylaxsis. If I missed a shot by a day or so I would get

a sort've odd feeling very briefly of everything being very " removed " and

" distant " from me. But, no swelling or difficulty with breathing, thankfully.

> >

> > Hello to all members

> >

> > I am to go into the hospital this Wednesday for a kidney removal (cancer).

> >

> > I will be starting Xolair treatments in January 2011.

> > Do you think this will be too soon after surgery?

> >

> > What side effects can I expect?

> >

> > I am so glad that this group is available.

> >

> > Thank you in advance for all your support.

> >

> > Bruce

> > Virginia Beach, VA

> >

>

[Guest guest]

My grandson has BPES and my son and daughter-in-law live south of Houston. He had surgery in Sept and it was very successful. We have been very pleased wth the doctors. Please call me and I will put you in contact with them. I do not remember the doctors' names.

Janel Young

325-668-6047

blepharophimosis New to Group

Hi, My name is . I joined this group because we just adopted a 2 1/2 year old daughter who has BPES. I am in the process of looking for a pediatric opthamologist for her. We live near Houston, TX and I was wondering if anyone has experience with a physician in Houston that they would recommend. Thank you!

[Guest guest]

Mrs. Young, Thank you so much for the information!  Your daughter-in-law has emailed me with the doctors name.  I really appreciate it! From: blepharophimosis [mailto:blepharophimosis ] On Behalf Of jyoung3045@...Sent: Sunday, January 16, 2011 3:00 PMblepharophimosis Subject: Re: blepharophimosis New to Group My grandson has BPES and my son and daughter-in-law live south of Houston. He had surgery in Sept and it was very successful. We have been very pleased wth the doctors. Please call me and I will put you in contact with them. I do not remember the doctors' names. Janel Young325-668-6047 blepharophimosis New to Group Hi, My name is . I joined this group because we just adopted a 2 1/2 year old daughter who has BPES. I am in the process of looking for a pediatric opthamologist for her. We live near Houston, TX and I was wondering if anyone has experience with a physician in Houston that they would recommend. Thank you!