Thanks!

October 4, 2005

,

You're very welcome! We're happy to have you w/us.

> Hi, everyone.

> I just wanted to say thank you for all of your kind replies to the

Andy

> update I posted. You are all so very nice and I'm glad to have found

> you for your warmth, support and encouragement. Thanks for giving us

> worried moms a place to vent and find comfort.

>

> mom of Andy and Ella, 8 mos.

February 13, 2006

In a message dated 2/13/2006 6:21:01 PM Eastern Standard Time, lspees@... writes:

Thanks again for the replies. It has been hard to get used to the

idea that Gavin may need to wear a band, but I will know more

tomorrow. I have posted 3 photos of him that I took just last week

(he is the naked baby). He likes to make funny faces, so it might be

difficult to see that one eye is smaller than the other. Also, I

think it is a little lower.

We just got ours friday and no complants here = )

Y**************Y

Loving the ones that keep my heart afloat

..-..-...dwh .-..-.

(..v..)....(..v..)

`._.'.-..-.`._.'

(.(..v..).)

\.`._.'./

'..|..'

(»§«)

)

(

~andra~

www.myspace.com/

February 13, 2006

In a message dated 2/13/2006 6:21:01 PM Eastern Standard Time, lspees@... writes:

Thanks again for the replies. It has been hard to get used to the

idea that Gavin may need to wear a band, but I will know more

tomorrow. I have posted 3 photos of him that I took just last week

(he is the naked baby). He likes to make funny faces, so it might be

difficult to see that one eye is smaller than the other. Also, I

think it is a little lower.

We just got ours friday and no complants here = )

Y**************Y

Loving the ones that keep my heart afloat

..-..-...dwh .-..-.

(..v..)....(..v..)

`._.'.-..-.`._.'

(.(..v..).)

\.`._.'./

'..|..'

(»§«)

)

(

~andra~

www.myspace.com/

February 13, 2006

Just wanted to say what a cutie Gavin is! Did you go some where to

get those pictures taken or did you do them yourself??

Isabelle 6 mos STARband 1/31/06

>

> Thanks again for the replies. It has been hard to get used to the

> idea that Gavin may need to wear a band, but I will know more

> tomorrow. I have posted 3 photos of him that I took just last

week

> (he is the naked baby). He likes to make funny faces, so it might

be

> difficult to see that one eye is smaller than the other. Also, I

> think it is a little lower.

>

> Thanks agian... this is a great discussion board!

>

February 13, 2006

Just wanted to say what a cutie Gavin is! Did you go some where to

get those pictures taken or did you do them yourself??

Isabelle 6 mos STARband 1/31/06

>

> Thanks again for the replies. It has been hard to get used to the

> idea that Gavin may need to wear a band, but I will know more

> tomorrow. I have posted 3 photos of him that I took just last

week

> (he is the naked baby). He likes to make funny faces, so it might

be

> difficult to see that one eye is smaller than the other. Also, I

> think it is a little lower.

>

> Thanks agian... this is a great discussion board!

>

February 13, 2006

I took them

> >

> > Thanks again for the replies. It has been hard to get used to

the

> > idea that Gavin may need to wear a band, but I will know more

> > tomorrow. I have posted 3 photos of him that I took just last

> week

> > (he is the naked baby). He likes to make funny faces, so it

might

> be

> > difficult to see that one eye is smaller than the other. Also,

I

> > think it is a little lower.

> >

> > Thanks agian... this is a great discussion board!

> >

>

February 13, 2006

I took them

> >

> > Thanks again for the replies. It has been hard to get used to

the

> > idea that Gavin may need to wear a band, but I will know more

> > tomorrow. I have posted 3 photos of him that I took just last

> week

> > (he is the naked baby). He likes to make funny faces, so it

might

> be

> > difficult to see that one eye is smaller than the other. Also,

I

> > think it is a little lower.

> >

> > Thanks agian... this is a great discussion board!

> >

>

May 10, 2006

Aloha !

If Phil is the moderator, my hats off to him! He's GREAT! I also

have to take my hat off to aSaxon and believe if the two of them

worked together on a " Woman's " site similar to this, they'd probably

win awards of some sort for it!

This site is a blessing to all of us men who are thinking about,

just starting, are doing, have been doing TRT and need advice from

knowledgable people other than most doctors who seem to let us guys

(and gals) down in that department.

Just last night I saw an ad on TV for a new(?) anti depressant that

is a SSRI and they only said that " sexual side effects are only in

RARE CASES! " BULL! I looked it up on WebMD and sexual side effects

(you know, the little one some of us (ahem) are dealing with) like

not being able to achieve orgasm during intercourse was listed in

the " sever " catagory!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

In MY humble opinion, I'd like to be told BEFORE I take ANYTHING

that the drug may make me permanently unable to achieve orgasm for

the rest of my life....anything for a buck when it comes to

phamaceuticals, eh?

Aloha for now, pardon the typo's,

Wayne

>

> ,

> I just wanted to commend you on your wonderful effort to build a

web site for

> women. I sure wish I knew how to make a web page like that but

I don't have

> the expertise to do that yet. You have had a terrible

experience with a friend and Mother, sorry to hear that and

understand now what inspired you do make it.

> .

> I too have gleaned a lot of information and printed it up for

future reference on

> men's problems. I think Phil is the most knowledgable of us all

here. He

> should build a site like that too with his past experience. I

too have been

> through a lot but not as bad as Phil. I know that is not a

picture of you,

> I don't care for the hair do. Ha!

> Thanks again, and by the way your site wil take most any size

font now,

> thanks for fixing that. Took me awhile to figure it out too.

>

> Ever Blessing,

> Roy

>

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

> goes everywhere you do. Get it on your phone.

>

May 10, 2006

I just help here Brad is the man here if it was not for his hard work this group

would not be here. He keeps the spam out and the place runing.

Phil

Wayne Birdie <wayne_in_hawaii27@...> wrote:

Aloha !

If Phil is the moderator, my hats off to him! He's GREAT! I also

have to take my hat off to aSaxon and believe if the two of them

worked together on a " Woman's " site similar to this, they'd probably

win awards of some sort for it!

This site is a blessing to all of us men who are thinking about,

just starting, are doing, have been doing TRT and need advice from

knowledgable people other than most doctors who seem to let us guys

(and gals) down in that department.

Just last night I saw an ad on TV for a new(?) anti depressant that

is a SSRI and they only said that " sexual side effects are only in

RARE CASES! " BULL! I looked it up on WebMD and sexual side effects

(you know, the little one some of us (ahem) are dealing with) like

not being able to achieve orgasm during intercourse was listed in

the " sever " catagory!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

In MY humble opinion, I'd like to be told BEFORE I take ANYTHING

that the drug may make me permanently unable to achieve orgasm for

the rest of my life....anything for a buck when it comes to

phamaceuticals, eh?

Aloha for now, pardon the typo's,

Wayne

>

> ,

> I just wanted to commend you on your wonderful effort to build a

web site for

> women. I sure wish I knew how to make a web page like that but

I don't have

> the expertise to do that yet. You have had a terrible

experience with a friend and Mother, sorry to hear that and

understand now what inspired you do make it.

> .

> I too have gleaned a lot of information and printed it up for

future reference on

> men's problems. I think Phil is the most knowledgable of us all

here. He

> should build a site like that too with his past experience. I

too have been

> through a lot but not as bad as Phil. I know that is not a

picture of you,

> I don't care for the hair do. Ha!

> Thanks again, and by the way your site wil take most any size

font now,

> thanks for fixing that. Took me awhile to figure it out too.

>

> Ever Blessing,

> Roy

>

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

> goes everywhere you do. Get it on your phone.

>

May 18, 2006

Sounds like they made your decision easy for you. The Insignia

scanner that Hanger uses is very neat and very easy.

Keep us updated.

Jen

(21.5 mo), tort resolved, Hanger Band Grad

(4 years)

>

> A BIG thank you to those that helped me with figuring out Hanger v.

Starband.

> I talked with both and it turns out that the starband people

don't have a

> cranial person right now - that settles that!!!

> Anyway, at hanger they do a scan instead of casting (yeah!) and

they can get

> a star or hanger - but they seem to be the same thing.

>

> Anyway - Thanks so much for everyones help!!! I was so freaking

out when i

> was given a choice - i didn't want to make the wrong one!!!

> I hope to get an appt for Friday or monday - so we can get this

ball

> rolling!!

>

> Jen

> Mommy to 4...and 1 more!!!!

> LULI'S HERE!

> " Luli "

> www.babiesonline.com/babies/j/jens5th/

>

July 17, 2006

, Be sure the plastic surgeon is agreeable to removing them en bloc if possible, or doing a complete capsulectomy if en bloc is not possible . . . also drains should be used following surgery until there is no significant drainage. If the surgeon tells you that you'll be deformed - run. Consider that a discription of his/her own skills. Hugs, Rogene

July 17, 2006

,

I know you'll feel better after a properly done explant like Rogene explained. I'm slowly feeling better after almost 14 years of illness and I was just explanted May 3rd.

Blessings & Prayers

Penni

Thanks!

Thanks so much for your input on this issue. I am going to set up an appointment to see a plastic surgeon this week to have mine removed. Like so many other things I have tried, I pray that it works. I know I will not feel better right away after having them out, but hope to make some progress toward feeling more energetic and having less pain. I am so grateful to be able to read what you have to say on the subject because so many of you have already gone through this. I am feeling hopeful that I too will recover to some extent and be able to have the energy and strength to play with my son and just do house chores without feeling a major strain on my body.

(funx2sweet)

See the all-new, redesigned .com. Check it out.

August 30, 2006

-Sierra,

That seems to be a problem in a lot of Dr's offices these days. I am

thinking that they are not hiring the brightest crayons in the

box...if you know what I mean! Usually they are 18 yr olds who are

too busy talking about their date last night to answer a question of

a pt. at the desk! And to try and get them to take a message for the

nurse is impossible....and if you look closely...they are using a lot

more office assistants these days...so when you want to give a

message to the Dr she has no medical background and screws the whole

message up...or forgets to give it to him! I have had problems in

several offices, so you are not alone!!! Your Dr probably never got

the message! One of the newest lines is I faxed it...like from on Dr

to another....one office says they faxed it ...and the other office

say they never got it. This has happened with the same 2 offices

twice over the same paper work....so I have to go in tomorrow and see

the DR. in order to get the copys in my hand to deliver them!...it is

pure incompetence! And they wonder why things don't run smoothly and

files get lost,referrals take months just to schedule, insurance

papers can't be found etc!! It is a chronic problem! I would call the

DR again!!.............jenna

-- In , " snowdrift52003 "

<snowdrift52003@...> wrote:

>

> Your response made me feel less alone with this.

>

> It bothers me that my rheumatologist hasn't called me. The last

time I

> called her with a problem, she never got the message. The people

who

> answer the phone at her clinic (and her nurse) seem so slow-witted!

> If I were to go on Enbrel, there's be an increased chance that I'd

need

> to contact her more often...her gatekeepers trouble me.

>

> Sierra

>

August 31, 2006

I will call the doctor again. I am also looking into switching. I

printed out a list of rheumatologists rated best in this area by

their peers. (My current doc was one of them, and she is very sharp,

but her haste greatly affects her work.) I'm looking for a doc who's

a little less busy, if that's possible. (Mine also teaches at the

University, and I suspect that's her greater interest.) If I could

have a bit more calm focus on my case and an office staff that seemed

capable, I'd be willing to drive further.

I've had two other rheumys though, and she's been the best. The first

one prescribed Dapsone (which I never took); hearing that made my

current rheumy's eyebrows go up. It's an antibiotic used for leprosy

with more side effects than benefits to CTD patients according to the

Mayo Clinic site. That same rheumy scolded me for going off

plaquinil, but I did so because he told me to! It would be soooo

reassuring to find a great doc and office!!!

Sierra

> >

> > Your response made me feel less alone with this.

> >

> > It bothers me that my rheumatologist hasn't called me. The last

> time I

> > called her with a problem, she never got the message. The people

> who

> > answer the phone at her clinic (and her nurse) seem so slow-

witted!

> > If I were to go on Enbrel, there's be an increased chance that

I'd

> need

> > to contact her more often...her gatekeepers trouble me.

> >

> > Sierra

> >

>

August 31, 2006

Hi Kat, I wasn't offended.

Further, my wife reports the same thing about some male doctors.

Personally, the worst treatment I ever received was from a female

rheumatologist who acted like my symptoms were in my head and in my

physio-therapist's head; and I had no arthritis. I was seeing the

physiotherapist about back pain that would not leave, and he said he

thought I had some form of arthritis, possibly ankylosing

spondylitis. This was just weeks before I blacked out due to lumbar

and thoracic pain receptor neurons overloading my brain while I was

driving a car 110 km/hr (about 70mph). Finally, years later, I read

on one of the major arthritis websites that Ankylosing Spondylitis

(PA spinal involvement) can cause narcoleptic-like episodes while

driving. So, years later, it was up to me to discover that I had PA

and it was a physiotherapist who said that my back seemed to be

flattening without reason at the sacrum and lumbar regions thereby

causing him to suspect AS. Also, 10 years of physiotherapy, pain

meds, chiropractic, massage therapy, meditation/relaxation nor

exercise improved my condition. I suppose most of the people here

have gone through similar routines - especially if the psoriasis did

not precede their other symptoms.

September 1, 2006

I read

> on one of the major arthritis websites that

> Ankylosing Spondylitis

> (PA spinal involvement) can cause narcoleptic-like

> episodes while

> driving.

Hi, Do you recall where you might have read this? I

have narcoleptic episodes while driving, every day,

while going back and forth to work. I've had a lot of

spinal pain the past four years, but my rheumy hasn't

been the least bit interested in what could be causing

it. I find this possible naroeptic episode/AS link

quite interesting.

warm blessings,

jane

__________________________________________________

April 30, 2007

Yeah, if you have the time to stir (or shake!) a bottle from time

to time that works pretty well to keep mold down. That is the

idea behind the Japanese Nuka pickles. They work great ...

not much salt ... but if you don't stir them they mold.

--

On 4/29/07, bunnybinky55 <bunnybinky55@...> wrote:

>

> Thank you for all your suggestions!! I wasn't very careful with the

> first batch........a couple of the beets did float to the top and

> they were at the surface the whole time. I did not get any mold the

> second time around but I gently turned the jar a few times a day to

> move things around in there. I may try to cut the salt back a little

> bit more in the next batch, add a little more whey (from separated

> milk) and keep gently turning the jar and see what happens. I have

> to say that I did taste the beet kvass today and it did not taste

> as salty.....it actually tasted..well, yummy! I mixed it with a

> little lemon juice and some filtered water. Thank you again! laura

>

May 19, 2007

> Dana, I just realized you wrote me back and answered my questions!

> Thank you!

I don't remember which message that was, because you did not leave any

part of it here, but I will try to answer your question here.

> Epsom salt bath seemed to help last night.

Then it was probably a phenol or other food intolerance issue.

http://www.danasview.net/phenol.htm

> I don't think I could chelate this way again with this severe of a

> reaction. If we use Andy's Protocol, will this happen?

Some kids *require* Andy's protocol. For others, including mine, it

is probably the safest option, but not *required*.

>>also if we wake him during the night it is

> hard to get him back to sleep. Any suggestions on this?

I only gave ALA 3x per day, which is not recommended by Andy, so

others will have to give you ideas on this.

Dana

October 2, 2007

Hey Bruce

Something funny about your message....

Kate

Thanks!

The message cannot be represented in 7-bit ASCII encoding and has been sent as

a binary attachment.

February 2, 2008

Anyone hear about NILOTINIB?

My Dr. wants me to maybe go off Sprycel and try it. Only because I came down

with a swollen face and lymph nodes this week.

Never heard of it but I am going to read about it.

Sharon

_____

From: [mailto: ] On Behalf Of Ed

Sent: Tuesday, January 29, 2008 8:26 PM

Subject: [ ] Thanks!

Thanks for your help!

Ed

1812 Eagle Bluff Ln

Las Vegas, Nevada. 89128 USA

[ ] Cash patient

Hi Buddies,

I just had my first visit to the hematologist, nice guy and open to work

with me on my CML ( I'll see what happen's later on). A bone marrow biopsy,

aspirate, cytogenetics, flow cytometry, PCR. the aproximate price they gave

me at the hospital was $1,500 do you think this price is accurate or is

wrong?. I just do not want to receive my bill for $15,000. As you know I'm a

cash patient thus my concern. After the testing I'll start with Gleevec 400

mg as soon as novartis help me and send it to me, but this might take a

couple of weeks. I would really appreciate if somebody shares some gleevec

that wont use!

Thanks in advance.

____________ _________ _________ _________ _________ _________ _

Looking for last minute shopping deals?

Find them fast with Search. http://tools.

<http://tools. search.. com/newsearch/ category. php?category=

shopping>

search.. com/newsearch/ category. php?category= shopping

February 2, 2008

Hi Sharon,

Nilotinib is one of the second generation drugs to combat CML. It is also

known by the names AMN107 and Tasigna. Novartis is the manufacturer.

Jerry Mayfield has a site that deals only with AMN107. You can check it out

at http://www.newcmldrug.com/amn_Discuss/default.asp

There are also several other new drugs out there. SKI-606 has shown good

results when Gleevec and Sprycel have failed.

Zavie

_____

From: [mailto: ] On Behalf Of Sharon

& Denny

Sent: February 1, 2008 8:52 PM

Subject: RE: [ ] Thanks!

Anyone hear about NILOTINIB?

My Dr. wants me to maybe go off Sprycel and try it. Only because I came down

with a swollen face and lymph nodes this week.

Never heard of it but I am going to read about it.

Sharon

_____

From: groups (DOT) <mailto:%40> com

[mailto:groups (DOT) <mailto:%40> com] On Behalf Of

Ed

Sent: Tuesday, January 29, 2008 8:26 PM

groups (DOT) <mailto:%40> com