New to this group

[Guest guest]

hi, glad you are here with us.

it sounds like you aren't getting proper treatment which happens a lot. can

you list all your meds? you won't feel well if you are treated to the tests,

you need to treat the symptoms. this is confusing for docs so you have to

advocate for yourself.

Gracia

Hi. I am new the the hypothyroidism group. I was diagnosed with it

about 10 years ago when my body started going haywire. Has anyone ever

used supplemental treatments to hypothyroidism besides the prescribed

medications? It seems like the longer I have it, or should I say as

the years go by, the more I develop other symptoms such as: RLS, acid

reflux disease, high cholesterol, high blood pressure, chronic

sinusitus, frequent headaches, never feeling refreshed after sleep and

joint pain. I have been reading a lot about symptoms of hypothyroidism

and have had my levels checked and I am all good. My question is, why

do I need so much medication (I take a total of 7) and why do I always

feel so lousy? Any suggestions?

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

No virus found in this incoming message.

Checked by AVG.

Version: 7.5.519 / Virus Database: 269.22.4/1355 - Release Date: 4/1/2008 5:37

PM

[Guest guest]

I'm so sorry that you and your family have this to deal with. What is her

prognosis? What treatment is suggested? Do you have a doctor you have confidence

in?

Harper

In a message dated 6/19/08 9:04:23 AM, leilajvilla@... writes:

>

> Hello, my name is Leila. My mother was diagnosed with last stage

> cirrhosis that was casused by autoimmune hepatitis. I am still in

> shock and pretty much lost and depressed. Can anyone offer any

> information on this as it would be greatly appreciated. Thank You.

>

>

>

**************

Gas prices getting you down? Search AOL Autos for

fuel-efficient used cars.

(http://autos.aol.com/used?ncid=aolaut00050000000007)

[Guest guest]

Thank you for replying....Her prognosis was last stage cirrhosis and needs a

transplant asap. The bad thing is that she does not have medical insurance and

we are having to apply for medicaid. We have been told by their social workers

that this is a long process that can take up to two years to complete. As far

as her physician is concerned, my mother is content with him but I am not quite

as satisfied since he repeatedly changes her meds/dosages as well as her diet.

Is it normal to go from a hepatic diet on day to a low then high protein diet

the next? I just think all these recommendations are for trial and error and

feel that they may cause her more damage at the end. What do you think?

Smiles,

Leila

flatcat9@... wrote:

I'm so sorry that you and your family have this to deal with. What is

her

prognosis? What treatment is suggested? Do you have a doctor you have confidence

in?

Harper

In a message dated 6/19/08 9:04:23 AM, leilajvilla@... writes:

>

> Hello, my name is Leila. My mother was diagnosed with last stage

> cirrhosis that was casused by autoimmune hepatitis. I am still in

> shock and pretty much lost and depressed. Can anyone offer any

> information on this as it would be greatly appreciated. Thank You.

>

>

>

**************

Gas prices getting you down? Search AOL Autos for

fuel-efficient used cars.

(http://autos.aol.com/used?ncid=aolaut00050000000007)

[Guest guest]

We put it into a spoonful of applesauce.

On Sep 23, 2008, at 4:40 PM, spearson40 wrote:

> Hi All,

> I joined this group a while back and have spent quite a bit of time

> reading historical posts about the Cutler protocol. It has become

> apparent to me (thanks !) that I have no choice with our 3

> year old but to move forward on this (global developmental delay, I

> had a flu shot when pregnant with him, he had some vaccines, etc.)

> His labs point to mito dysfunction. He's about 38 pounds.

>

> So I'm considering starting him on 10mgs of DMSA and 10mgs of ALA.

> If I buy the 25mg capsules of DMSA from Kirkman and the ALA from

> vrp.com... I'm left with powder that I need to figure out what to mix

> it in that's " okay " . I've read some of the info here about

> juice/acidity/ etc. etc .

>

> Do you mind sharing with me what is okay to put this powder in ???

> What has been easiest to get in my kid - especially in the middle of

> the night. And, no, he's not swallowing pills yet. Although I guess

> we could try to teach him.

>

> Thanks so much. I appreciate your input.

> in CA

>

>

>

[Guest guest]

Thanks. The applesauce thing would be our first choice but then I've

been reading that apples have issues for some kids? Gosh, i'm so

confused. Was it b/c of phenols, or something? Okay, I guess I need

to read more. Does the applesauce mask the taste okay?

>

> > Hi All,

> > I joined this group a while back and have spent quite a bit of

time

> > reading historical posts about the Cutler protocol. It has become

> > apparent to me (thanks !) that I have no choice with our 3

> > year old but to move forward on this (global developmental delay,

I

> > had a flu shot when pregnant with him, he had some vaccines, etc.)

> > His labs point to mito dysfunction. He's about 38 pounds.

> >

> > So I'm considering starting him on 10mgs of DMSA and 10mgs of ALA.

> > If I buy the 25mg capsules of DMSA from Kirkman and the ALA from

> > vrp.com... I'm left with powder that I need to figure out what to

mix

> > it in that's " okay " . I've read some of the info here about

> > juice/acidity/ etc. etc .

> >

> > Do you mind sharing with me what is okay to put this powder in ???

> > What has been easiest to get in my kid - especially in the middle

of

> > the night. And, no, he's not swallowing pills yet. Although I

guess

> > we could try to teach him.

> >

> > Thanks so much. I appreciate your input.

> > in CA

> >

> >

> >

>

>

>

>

[Guest guest]

You can also use a juice of your choice and mix it in a medicine

syringe for him to drink.

-- In , " spearson40 " <spearson40@...> wrote:

>

> Hi All,

> I joined this group a while back and have spent quite a bit of time

> reading historical posts about the Cutler protocol. It has become

> apparent to me (thanks !) that I have no choice with our 3

> year old but to move forward on this (global developmental delay, I

> had a flu shot when pregnant with him, he had some vaccines, etc.)

> His labs point to mito dysfunction. He's about 38 pounds.

>

> So I'm considering starting him on 10mgs of DMSA and 10mgs of ALA.

> If I buy the 25mg capsules of DMSA from Kirkman and the ALA from

> vrp.com... I'm left with powder that I need to figure out what to mix

> it in that's " okay " . I've read some of the info here about

> juice/acidity/ etc. etc .

>

> Do you mind sharing with me what is okay to put this powder in ???

> What has been easiest to get in my kid - especially in the middle of

> the night. And, no, he's not swallowing pills yet. Although I guess

> we could try to teach him.

>

> Thanks so much. I appreciate your input.

> in CA

>

[Guest guest]

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

From: spearson40

Thanks. The applesauce thing would be our first choice but then I've

been reading that apples have issues for some kids? Gosh, i'm so

confused. Was it b/c of phenols, or something? Okay, I guess I need

to read more. Does the applesauce mask the taste okay?

===>Hi ,

Welcome!

We have used applesauce, or you can use pearsauce or anything soft. There is

a link that talks about putting this in pineapple juice and that would be okay

also. In that case you put, for example 5 doses in 5 tsps of pineapple juice,

mix well and then just give a teaspoon at a time.

I think the rule is not to mix up anymore than 12 hours worth of stuff.

The applesauce masks the taste for all but a very few, very sensitive kids,

most do fine with this.

I

> > had a flu shot when pregnant with him, he had some vaccines, etc.)

> > His labs point to mito dysfunction. He's about 38 pounds.

> >

> > So I'm considering starting him on 10mgs of DMSA and 10mgs of ALA.

> > If I buy the 25mg capsules of DMSA from Kirkman and the ALA from

> > vrp.com... I'm left with powder that I need to figure out what to

mix

> > it in that's " okay " . I've read some of the info here about

> > juice/acidity/ etc. etc .

> >

> > Do you mind sharing with me what is okay to put this powder in ???

> > What has been easiest to get in my kid - especially in the middle

of

> > the night. And, no, he's not swallowing pills yet. Although I

guess

> > we could try to teach him.

> >

> > Thanks so much. I appreciate your input.

> > in CA

> >

> >

> >

>

>

>

>

[Guest guest]

Okay, thanks . I'll first try the pineapple juice and see if

my son will drink it. And then move onto other options such as the

applesauce/pear sauce if he won't. The trick is finding that thing

he loves, which he'll motivate to take in the middle of the night.

We're preparing ourselves for a new way of life...the up in the

middle of the night thing...and whatever I can do to make it the

least frustrating for all involved is what I'm after!

>

>

> ----- Original Message -----

> From: spearson40

>

>

>

> Thanks. The applesauce thing would be our first choice but then

I've

> been reading that apples have issues for some kids? Gosh, i'm so

> confused. Was it b/c of phenols, or something? Okay, I guess I

need

> to read more. Does the applesauce mask the taste okay?

>

> ===>Hi ,

>

> Welcome!

>

> We have used applesauce, or you can use pearsauce or anything

soft. There is a link that talks about putting this in pineapple

juice and that would be okay also. In that case you put, for example

5 doses in 5 tsps of pineapple juice, mix well and then just give a

teaspoon at a time.

>

> I think the rule is not to mix up anymore than 12 hours worth of

stuff.

>

> The applesauce masks the taste for all but a very few, very

sensitive kids, most do fine with this.

>

>

>

>

>

>

>

>

>

>

>

> I

> > > had a flu shot when pregnant with him, he had some vaccines,

etc.)

> > > His labs point to mito dysfunction. He's about 38 pounds.

> > >

> > > So I'm considering starting him on 10mgs of DMSA and 10mgs of

ALA.

> > > If I buy the 25mg capsules of DMSA from Kirkman and the ALA

from

> > > vrp.com... I'm left with powder that I need to figure out

what to

> mix

> > > it in that's " okay " . I've read some of the info here about

> > > juice/acidity/ etc. etc .

> > >

> > > Do you mind sharing with me what is okay to put this powder

in ???

> > > What has been easiest to get in my kid - especially in the

middle

> of

> > > the night. And, no, he's not swallowing pills yet. Although I

> guess

> > > we could try to teach him.

> > >

> > > Thanks so much. I appreciate your input.

> > > in CA

> > >

> > >

> > >

> >

> >

> >

> >

[Guest guest]

[ ] Re: New to this group

Okay, thanks . I'll first try the pineapple juice and see if

my son will drink it. And then move onto other options such as the

applesauce/pear sauce if he won't. The trick is finding that thing

he loves, which he'll motivate to take in the middle of the night.

We're preparing ourselves for a new way of life...the up in the

middle of the night thing...and whatever I can do to make it the

least frustrating for all involved is what I'm after!

===>I like a woman with a plan! Most don't find the night doses any problems,

the kids are usually fine with it, it's the parents' who sometimes anticipate

issues. Just remain calm and optimistic and it's likely to go fine.

After a couple of rounds he's not even likely to remember taking it in the

night.

Pears are in season here in Ohio, I just made some pearsauce, it's easy and

very delicious.

>

>

> ----- Original Message -----

> From: spearson40

>

>

>

> Thanks. The applesauce thing would be our first choice but then

I've

> been reading that apples have issues for some kids? Gosh, i'm so

> confused. Was it b/c of phenols, or something? Okay, I guess I

need

> to read more. Does the applesauce mask the taste okay?

>

> ===>Hi ,

>

> Welcome!

>

> We have used applesauce, or you can use pearsauce or anything

soft. There is a link that talks about putting this in pineapple

juice and that would be okay also. In that case you put, for example

5 doses in 5 tsps of pineapple juice, mix well and then just give a

teaspoon at a time.

>

> I think the rule is not to mix up anymore than 12 hours worth of

stuff.

>

> The applesauce masks the taste for all but a very few, very

sensitive kids, most do fine with this.

>

>

>

>

>

>

>

>

>

>

>

> I

> > > had a flu shot when pregnant with him, he had some vaccines,

etc.)

> > > His labs point to mito dysfunction. He's about 38 pounds.

> > >

> > > So I'm considering starting him on 10mgs of DMSA and 10mgs of

ALA.

> > > If I buy the 25mg capsules of DMSA from Kirkman and the ALA

from

> > > vrp.com... I'm left with powder that I need to figure out

what to

> mix

> > > it in that's " okay " . I've read some of the info here about

> > > juice/acidity/ etc. etc .

> > >

> > > Do you mind sharing with me what is okay to put this powder

in ???

> > > What has been easiest to get in my kid - especially in the

middle

> of

> > > the night. And, no, he's not swallowing pills yet. Although I

> guess

> > > we could try to teach him.

> > >

> > > Thanks so much. I appreciate your input.

> > > in CA

> > >

> > >

> > >

> >

> >

> >

> >

[Guest guest]

Mango? very sweet, my son loves it, ALison M

-------------- Original message ----------------------

From: " spearson40 " <spearson40@...>

> Okay, thanks . I'll first try the pineapple juice and see if

> my son will drink it. And then move onto other options such as the

> applesauce/pear sauce if he won't. The trick is finding that thing

> he loves, which he'll motivate to take in the middle of the night.

> We're preparing ourselves for a new way of life...the up in the

> middle of the night thing...and whatever I can do to make it the

> least frustrating for all involved is what I'm after!

>

>

>

>

> >

> >

> > ----- Original Message -----

> > From: spearson40

> >

> >

> >

> > Thanks. The applesauce thing would be our first choice but then

> I've

> > been reading that apples have issues for some kids? Gosh, i'm so

> > confused. Was it b/c of phenols, or something? Okay, I guess I

> need

> > to read more. Does the applesauce mask the taste okay?

> >

> > ===>Hi ,

> >

> > Welcome!

> >

> > We have used applesauce, or you can use pearsauce or anything

> soft. There is a link that talks about putting this in pineapple

> juice and that would be okay also. In that case you put, for example

> 5 doses in 5 tsps of pineapple juice, mix well and then just give a

> teaspoon at a time.

> >

> > I think the rule is not to mix up anymore than 12 hours worth of

> stuff.

> >

> > The applesauce masks the taste for all but a very few, very

> sensitive kids, most do fine with this.

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> > I

> > > > had a flu shot when pregnant with him, he had some vaccines,

> etc.)

> > > > His labs point to mito dysfunction. He's about 38 pounds.

> > > >

> > > > So I'm considering starting him on 10mgs of DMSA and 10mgs of

> ALA.

> > > > If I buy the 25mg capsules of DMSA from Kirkman and the ALA

> from

> > > > vrp.com... I'm left with powder that I need to figure out

> what to

> > mix

> > > > it in that's " okay " . I've read some of the info here about

> > > > juice/acidity/ etc. etc .

> > > >

> > > > Do you mind sharing with me what is okay to put this powder

> in ???

> > > > What has been easiest to get in my kid - especially in the

> middle

> > of

> > > > the night. And, no, he's not swallowing pills yet. Although I

> > guess

> > > > we could try to teach him.

> > > >

> > > > Thanks so much. I appreciate your input.

> > > > in CA

> > > >

> > > >

> > > >

> > >

> > >

> > >

> > >

[Guest guest]

Thanks ! We LOVE pears...gosh, those D'Angous are like candy

when you find a good one. I spent my whole life thinking I hated

pears until some family member sent my husband and I a box early in

our marriage and I couldn't believe what I had been missing out on!

Grrrrr....

> >

> >

> > ----- Original Message -----

> > From: spearson40

> >

> >

> >

> > Thanks. The applesauce thing would be our first choice but then

> I've

> > been reading that apples have issues for some kids? Gosh, i'm

so

> > confused. Was it b/c of phenols, or something? Okay, I guess I

> need

> > to read more. Does the applesauce mask the taste okay?

> >

> > ===>Hi ,

> >

> > Welcome!

> >

> > We have used applesauce, or you can use pearsauce or anything

> soft. There is a link that talks about putting this in pineapple

> juice and that would be okay also. In that case you put, for

example

> 5 doses in 5 tsps of pineapple juice, mix well and then just give

a

> teaspoon at a time.

> >

> > I think the rule is not to mix up anymore than 12 hours worth

of

> stuff.

> >

> > The applesauce masks the taste for all but a very few, very

> sensitive kids, most do fine with this.

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> > I

> > > > had a flu shot when pregnant with him, he had some

vaccines,

> etc.)

> > > > His labs point to mito dysfunction. He's about 38 pounds.

> > > >

> > > > So I'm considering starting him on 10mgs of DMSA and 10mgs

of

> ALA.

> > > > If I buy the 25mg capsules of DMSA from Kirkman and the ALA

> from

> > > > vrp.com... I'm left with powder that I need to figure out

> what to

> > mix

> > > > it in that's " okay " . I've read some of the info here about

> > > > juice/acidity/ etc. etc .

> > > >

> > > > Do you mind sharing with me what is okay to put this powder

> in ???

> > > > What has been easiest to get in my kid - especially in the

> middle

> > of

> > > > the night. And, no, he's not swallowing pills yet. Although

I

> > guess

> > > > we could try to teach him.

> > > >

> > > > Thanks so much. I appreciate your input.

> > > > in CA

> > > >

> > > >

> > > >

> > >

> > >

> > >

> > >

[Guest guest]

Some kids do have issues with phenols. Mine fortunately, do not.

Look for red ears after eating phenolic foods. Yes, my kids seem to

think it masks the flavor OK. And, it have been much easier than

drinking it in juice - (tried that first).

On Sep 23, 2008, at 4:52 PM, spearson40 wrote:

> Thanks. The applesauce thing would be our first choice but then I've

> been reading that apples have issues for some kids? Gosh, i'm so

> confused. Was it b/c of phenols, or something? Okay, I guess I need

> to read more. Does the applesauce mask the taste okay?

>

>

> >

> > > Hi All,

> > > I joined this group a while back and have spent quite a bit of

> time

> > > reading historical posts about the Cutler protocol. It has become

> > > apparent to me (thanks !) that I have no choice with our 3

> > > year old but to move forward on this (global developmental delay,

> I

> > > had a flu shot when pregnant with him, he had some vaccines, etc.)

> > > His labs point to mito dysfunction. He's about 38 pounds.

> > >

> > > So I'm considering starting him on 10mgs of DMSA and 10mgs of ALA.

> > > If I buy the 25mg capsules of DMSA from Kirkman and the ALA from

> > > vrp.com... I'm left with powder that I need to figure out what to

> mix

> > > it in that's " okay " . I've read some of the info here about

> > > juice/acidity/ etc. etc .

> > >

> > > Do you mind sharing with me what is okay to put this powder in ???

> > > What has been easiest to get in my kid - especially in the middle

> of

> > > the night. And, no, he's not swallowing pills yet. Although I

> guess

> > > we could try to teach him.

> > >

> > > Thanks so much. I appreciate your input.

> > > in CA

> > >

> > >

> > >

> >

> >

> >

> >

[Guest guest]

Hi and welcome to the group jump in anytime.

Co-Moderator

Phil

> From: <victorinocks@...>

> Subject: New to this group

>

> Date: Friday, October 3, 2008, 3:07 PM

> I am new to this discussion group. It is unique that I

> found it thru

> the orchiectomy discussion site. My urologist recommended

> I find a

> group of people with similar situations to talk with when I

> found the

> orchiectomy group in May 2008. When I joined this site a

> few days ago

> I found you guys talking about much of what I experienced

> in my life.

> I was born 51 years ago with undescended testes, had

> surgery to correct

> it when I was 10 (too late), had gynecomastia ( that was

> hell, had

> surgery in 1992), I am sterile, had left side orchiectomy

> 11 years ago

> and had the right side orch in April of this year ( both

> due to extreme

> and unbearable pain) Oh, did I mention hypogonadism? I

> have been

> using t replacement for about 8 years. I think I am still

> a man. I

> currently use Androgel daily. For me, I have spent most of

> my life

> ashamed of the size of my sex organs and man boobs. I see

> there is a

> lot of discussion on this site. I will probably post a

> comment or two

> in the near future. I just wanted to let you guys know I

> am new and

> look forward to future discussion. Thanks,

>

>

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

>

>

[Guest guest]

Welcome to the group - How is the androgel working for you? Some do well on

it but it seems most do not. You just don't get your T high enough.

 

Arkansas

From: <victorinocks@...>

Subject: New to this group

Date: Friday, October 3, 2008, 2:07 PM

I am new to this discussion group. It is unique that I found it thru

the orchiectomy discussion site. My urologist recommended I find a

group of people with similar situations to talk with when I found the

orchiectomy group in May 2008. When I joined this site a few days ago

I found you guys talking about much of what I experienced in my life.

I was born 51 years ago with undescended testes, had surgery to correct

it when I was 10 (too late), had gynecomastia ( that was hell, had

surgery in 1992), I am sterile, had left side orchiectomy 11 years ago

and had the right side orch in April of this year ( both due to extreme

and unbearable pain) Oh, did I mention hypogonadism? I have been

using t replacement for about 8 years. I think I am still a man. I

currently use Androgel daily. For me, I have spent most of my life

ashamed of the size of my sex organs and man boobs. I see there is a

lot of discussion on this site. I will probably post a comment or two

in the near future. I just wanted to let you guys know I am new and

look forward to future discussion. Thanks,

[Guest guest]

Hi Dan,   I believe I will need to see an endocrinologist soon.   The Androgel

seemed to work for me when I still had one testicle.   That was prior to April

of this year.   Since I had that one removed I seem to have fallen in erectile

ability.   I cant seem to stay firm long enough. I take Cialis for ED and have

for the past 2 years.    I think after reading many of the posts on this site I

need additional HRT. With all that I have been thru in my life as I described in

my introduction, I believe I have major endocrine problems.    They too, like

the testicular pain were never addressed correctly but will be now.  I'm 51 and

want to start living life as it should be.  I am glad to have found this site

too.   I will writing a lot more in the future.   One question I have is for the

guys that have or had gynecomastia;  it was psychologically damaging to me as a

teenager.   Was it for you?    I had plastic surgery in 1992

(age 35) and glad I did but the psychological scars from the past still haunt

me.   Combining that with underdeveloped sex organs, I felt like a freak.   I

have been seeing a psychiatrist for a few years.  He suggested I talk with

others that have been thru the same.  

From: <victorinocks@ verizon.net>

Subject: New to this group

Date: Friday, October 3, 2008, 2:07 PM

I am new to this discussion group. It is unique that I found it thru

the orchiectomy discussion site. My urologist recommended I find a

group of people with similar situations to talk with when I found the

orchiectomy group in May 2008. When I joined this site a few days ago

I found you guys talking about much of what I experienced in my life.

I was born 51 years ago with undescended testes, had surgery to correct

it when I was 10 (too late), had gynecomastia ( that was hell, had

surgery in 1992), I am sterile, had left side orchiectomy 11 years ago

and had the right side orch in April of this year ( both due to extreme

and unbearable pain) Oh, did I mention hypogonadism? I have been

using t replacement for about 8 years. I think I am still a man. I

currently use Androgel daily. For me, I have spent most of my life

ashamed of the size of my sex organs and man boobs. I see there is a

lot of discussion on this site. I will probably post a comment or two

in the near future. I just wanted to let you guys know I am new and

look forward to future discussion. Thanks,

[Guest guest]

Hey - I did not have the issues you have had - but It sounds like you are

not absorbing the androgel anymore - this happens quit often. I tried androgel -

didn't work for me so I went on shots of Testosterone Cypionate - and that has

been wonderful. There is documentation in the files section that states if your

total T is not > 500, you will have issues associated with erections and libido.

I keep mine around 700 but I also have to take arimidex for E2 control and

Cialis for ED. The combination keeps me where I like to be.

 

Keep us posted - most have not had a lot of luck with Endos though - they do not

seem to be up on the latest.

 

Arkansas

From: <victorinocks@ verizon.net>

Subject: New to this group

Date: Friday, October 3, 2008, 2:07 PM

I am new to this discussion group. It is unique that I found it thru

the orchiectomy discussion site. My urologist recommended I find a

group of people with similar situations to talk with when I found the

orchiectomy group in May 2008. When I joined this site a few days ago

I found you guys talking about much of what I experienced in my life.

I was born 51 years ago with undescended testes, had surgery to correct

it when I was 10 (too late), had gynecomastia ( that was hell, had

surgery in 1992), I am sterile, had left side orchiectomy 11 years ago

and had the right side orch in April of this year ( both due to extreme

and unbearable pain) Oh, did I mention hypogonadism? I have been

using t replacement for about 8 years. I think I am still a man. I

currently use Androgel daily. For me, I have spent most of my life

ashamed of the size of my sex organs and man boobs. I see there is a

lot of discussion on this site. I will probably post a comment or two

in the near future. I just wanted to let you guys know I am new and

look forward to future discussion. Thanks,

[Guest guest]

Hi Dan,  Thanks for that info.  Early my HRT I used Delatestryl injections which

were self administered with training by the doctor.   It worked for the first 2

years until I developed cellulitis and was hospitalized for a week ( nearly

died)   My doctor then put me on the Androderm patch.   That didnt work because

the adhesive was burning my skin.   That is why I am Androgel now.     Chances

are you are correct that may need to try something else.  I know that in June my

t-level was 462.    I am having difficulty but I dont want to rule out

some other issues in my family life.   There is some stress but combining it

with low t-level may contribute to the ED.    I will make an appointment to see

an Endo this week.   Thanks for the advice.  The other problems I mentioned in

my introduction are just part of my experience with hypogonadism.   It isnt

until recently I am really starting to do something.   I thought I had

to live with it and it controlled me.   I now find there are things I can do to

limit the effects.   Thanks again,     

From: <victorinocks@ verizon.net>

Subject: New to this group

Date: Friday, October 3, 2008, 2:07 PM

I am new to this discussion group. It is unique that I found it thru

the orchiectomy discussion site. My urologist recommended I find a

group of people with similar situations to talk with when I found the

orchiectomy group in May 2008. When I joined this site a few days ago

I found you guys talking about much of what I experienced in my life.

I was born 51 years ago with undescended testes, had surgery to correct

it when I was 10 (too late), had gynecomastia ( that was hell, had

surgery in 1992), I am sterile, had left side orchiectomy 11 years ago

and had the right side orch in April of this year ( both due to extreme

and unbearable pain) Oh, did I mention hypogonadism? I have been

using t replacement for about 8 years. I think I am still a man. I

currently use Androgel daily. For me, I have spent most of my life

ashamed of the size of my sex organs and man boobs. I see there is a

lot of discussion on this site. I will probably post a comment or two

in the near future. I just wanted to let you guys know I am new and

look forward to future discussion. Thanks,

[Guest guest]

Yes I tried the patch also - left these large red bullseyes on me where ever I

stuck them. I wanted to stick one on my Dr. for even suggesting it. Later I

realized they have to try the less evasive measures first with shots as a last

result. I can't imagine how tough it was growing up - peer stress is bad enough

with the added complications. Gynomastia seems to be one of those things that we

really don't have our arms around yet. For example, some men who really didn't

have a history before TRT suddenly develop breast. I know it is linked to

estrogen but it doesn't seem to be that cut and dry. I applaude you for taking

the initiative to do something about it. My only advice is remember you are in

control. If your Dr. isn't willing to work with you (this should be a team

effort) don't hesitate to say no thanks - I will work with someone else.

 

Good Luck - Arkansas

From: <victorinocks@ verizon.net>

Subject: New to this group

Date: Friday, October 3, 2008, 2:07 PM

I am new to this discussion group. It is unique that I found it thru

the orchiectomy discussion site. My urologist recommended I find a

group of people with similar situations to talk with when I found the

orchiectomy group in May 2008. When I joined this site a few days ago

I found you guys talking about much of what I experienced in my life.

I was born 51 years ago with undescended testes, had surgery to correct

it when I was 10 (too late), had gynecomastia ( that was hell, had

surgery in 1992), I am sterile, had left side orchiectomy 11 years ago

and had the right side orch in April of this year ( both due to extreme

and unbearable pain) Oh, did I mention hypogonadism? I have been

using t replacement for about 8 years. I think I am still a man. I

currently use Androgel daily. For me, I have spent most of my life

ashamed of the size of my sex organs and man boobs. I see there is a

lot of discussion on this site. I will probably post a comment or two

in the near future. I just wanted to let you guys know I am new and

look forward to future discussion. Thanks,

[Guest guest]

Hi Dan,   The patches left giant welts on my backside ( that is where I was told

to place them)   I tried it for about a month but had to give up.   Then I had

to fight like hell with my insurance provider to cover Androgel.  For me, my

life with hypogonadism is worth writing a book.  As I stated earlier,

undescended testes, orchiopexies to pull them down ( too late) developing

breasts in puberty, sterility discovered when attempting to conceive,  constant

testicular pain,  breast removal surgery,  orchiectomies  and of course, all

along; knowing that something was wrong with me.   Yes, it does play a

psychological game.   I would take a guess that most guys on this site are

emotionally scarred because of hypogonadism.   The physical effects are bad

enough let alone the mental aspects.    Sorry I am rambling.   I used to be

angry about it, now I am just sad.   I think alot of it has to do with

t-levels.   I have an

appointment to see my family doctor.   Hopefully, she will send me to an

Endo.   If she doesnt, I will take care of it on my own.  I have noticed since

my right side orchiectomy in April that my drive is down and my ability to get

hard and stay hard has diminished.   Of course, this is causing problems in my

marriage.   Wife asks all too often " do I turn you on? "      YES SHE DOES.    I

just wish I could show it.   

       Thanks for listening,

From: <victorinocks@ verizon.net>

Subject: New to this group

Date: Friday, October 3, 2008, 2:07 PM

I am new to this discussion group. It is unique that I found it thru

the orchiectomy discussion site. My urologist recommended I find a

group of people with similar situations to talk with when I found the

orchiectomy group in May 2008. When I joined this site a few days ago

I found you guys talking about much of what I experienced in my life.

I was born 51 years ago with undescended testes, had surgery to correct

it when I was 10 (too late), had gynecomastia ( that was hell, had

surgery in 1992), I am sterile, had left side orchiectomy 11 years ago

and had the right side orch in April of this year ( both due to extreme

and unbearable pain) Oh, did I mention hypogonadism? I have been

using t replacement for about 8 years. I think I am still a man. I

currently use Androgel daily. For me, I have spent most of my life

ashamed of the size of my sex organs and man boobs. I see there is a

lot of discussion on this site. I will probably post a comment or two

in the near future. I just wanted to let you guys know I am new and

look forward to future discussion. Thanks,

[Guest guest]

Hi Lori,

Welcome to the group. Yeah, we get it. There you were expecting your

spine to leave you alone and WHAM!...the whole thing is " front and

center " in your life again. Its HUGE, and it stinks to be in

pain....but hopefully your current doctor has determined that there

is no real emergency in progress, which means that you have an

opportunity to take time and get opinions and slowly feel your way

along here.

You will hopefully be able to find good help fairly close at hand. A

number of members have had surgery in NYC and that will provide you

with good information about their experiences. Off the top of my

head I would say that DrBoachie-Adjej at the Hospital for Special

Surgery is the most often consulted surgeon for this group, and 2

other doctors who practice in NY and do revision that members here

have consulted are Dr Bendo and Dr Errico.

Another source of information is the Scoliosis Research Society

website that has a physician locator (www.srs.org). Obviously you

will be looking for a specialist that deals with the adult

population, but also llok for scoliosis, aging spine and

degeneration.

I know that this may or may not be possible for you, depending on

your financial situation....but if you already have a recent set of

xrays and mri or ct scans, the cost of just an office visit/consult

with a doctor who has lots of experience in us tricky post

Harrington cases might be worth considering. A consult does not mean

that you are agreeing to surgery...it will just give you a chance to

understand what yardstick you will need to use to evaluate any

surgeon and his/her recommendations. I did have a 2nd opinion with

DrBoachie, he does not participate in any insurance...so he was out

of network and reimbursed at a lower rate by my BC/BS...but I

figured it was well worth the extra dollars to have that valuable

info.

My words of wisdom are to be very careful in whatever choices you

make going forward. Take as much time as you can to educate yourself

about your condition and what various surgeons propose to do about

it. The surgery to take you from where you are right now to where

you wish to go is considered one of the most complex surgeies out

there and there are often many complications along the way. Having

already had an unsucessful revision you are already in need of a

very experienced surgeon.

While you are going through this you will find lots of information

and support, as well as friends who have had life experiences much

like your own. This site is a little awkward for going backward and

pulling information out of posts, but if you go to the Home page you

will see all kinds of information and member stories available

through the left hand menu. I also recommend going backward throgh

posts as your time permits.

We are here to help you and hope that we get to know you better in

the coming days.

Take Care, Cam

[Guest guest]

Thank you so very much for your quick reply.....I have looked into the Hospital for Special Surgery in NYC, actually referred to Dr. Cammisso, who doesnt participate with my insurance, chief of spine surgery there.....Also had a consultation with Dr. Errico in 2006 and quite frankly I heard he was one of the best until I heard thru a friend from one of his

former patients who became paralyzed after Dr. Errico did her surgery....that was enough to scare the heck out of me....

I get scared that the longer I wait the worse it may be, as we age and condition worsens, is it harder and higher risk than if I do it soon????

Its very scarey and we all look for someone to "cure" our pain...but I have been told by several doctors to wait until I absolutely cant take the pain anymore before going thru such extensive surgery, I just worry that time is not on my side.

I will look thru the posts, thanks for your help.

Lori

From: cammaltby <cammaltby@...>Subject: [ ] Re: New to this group Date: Monday, October 27, 2008, 11:30 PM

Hi Lori,Welcome to the group. Yeah, we get it. There you were expecting your spine to leave you alone and WHAM!...the whole thing is "front and center" in your life again. Its HUGE, and it stinks to be in pain....but hopefully your current doctor has determined that there is no real emergency in progress, which means that you have an opportunity to take time and get opinions and slowly feel your way along here.You will hopefully be able to find good help fairly close at hand. A number of members have had surgery in NYC and that will provide you with good information about their experiences. Off the top of my head I would say that DrBoachie-Adjej at the Hospital for Special Surgery is the most often consulted surgeon for this group, and 2 other doctors who practice in NY and do revision that members here have consulted are Dr Bendo and Dr Errico.Another source of

information is the Scoliosis Research Society website that has a physician locator (www.srs.org) . Obviously you will be looking for a specialist that deals with the adult population, but also llok for scoliosis, aging spine and degeneration. I know that this may or may not be possible for you, depending on your financial situation... .but if you already have a recent set of xrays and mri or ct scans, the cost of just an office visit/consult with a doctor who has lots of experience in us tricky post Harrington cases might be worth considering. A consult does not mean that you are agreeing to surgery...it will just give you a chance to understand what yardstick you will need to use to evaluate any surgeon and his/her recommendations. I did have a 2nd opinion with DrBoachie, he does not participate in any insurance... so he was out of network and reimbursed at a lower rate by my BC/BS...but I

figured it was well worth the extra dollars to have that valuable info.My words of wisdom are to be very careful in whatever choices you make going forward. Take as much time as you can to educate yourself about your condition and what various surgeons propose to do about it. The surgery to take you from where you are right now to where you wish to go is considered one of the most complex surgeies out there and there are often many complications along the way. Having already had an unsucessful revision you are already in need of a very experienced surgeon.While you are going through this you will find lots of information and support, as well as friends who have had life experiences much like your own. This site is a little awkward for going backward and pulling information out of posts, but if you go to the Home page you will see all kinds of information and member stories available

through the left hand menu. I also recommend going backward throgh posts as your time permits.We are here to help you and hope that we get to know you better in the coming days.Take Care, Cam

[Guest guest]

Lori,

I have no direct experience with Dr Errico, but I've heard that he is

a fine surgeon. Every surgery, especially one as complex as a spinal

revision for flatback, carries heavy risks of paralysis. It's a very

sad thing when it happens, and I'd be leery of having surgery with

someone who has had several of his patients end up paralyzed after

surgery. That might suggest that he isn't as careful as he should

be. But, unforunately, it is a horrible outcome that occasionally

happens even in the best of circumstances with the best of surgeons.

On another flatback list, one of the members had this happen last

year and is now paralyzed even though she went with a highly regarded

surgeon. It's one of those benefits vs risks things that everyone

must consider when undertaking a major surgery like this.

But from what I've heard, Dr Errico is a very good surgeon. I'm

sorry that your friend's friend had a bad outcome.

>

> From: cammaltby <cammaltby@...>

> Subject: [ ] Re: New to this group

>

> Date: Monday, October 27, 2008, 11:30 PM

>

>

>

>

>

>

> Hi Lori,

>

> Welcome to the group. Yeah, we get it. There you were expecting

your

> spine to leave you alone and WHAM!...the whole thing is " front and

> center " in your life again. Its HUGE, and it stinks to be in

> pain....but hopefully your current doctor has determined that there

> is no real emergency in progress, which means that you have an

> opportunity to take time and get opinions and slowly feel your way

> along here.

>

> You will hopefully be able to find good help fairly close at hand.

A

> number of members have had surgery in NYC and that will provide you

> with good information about their experiences. Off the top of my

> head I would say that DrBoachie-Adjej at the Hospital for Special

> Surgery is the most often consulted surgeon for this group, and 2

> other doctors who practice in NY and do revision that members here

> have consulted are Dr Bendo and Dr Errico.

>

> Another source of information is the Scoliosis Research Society

> website that has a physician locator (www.srs.org) . Obviously you

> will be looking for a specialist that deals with the adult

> population, but also llok for scoliosis, aging spine and

> degeneration.

>

> I know that this may or may not be possible for you, depending on

> your financial situation... .but if you already have a recent set

of

> xrays and mri or ct scans, the cost of just an office visit/consult

> with a doctor who has lots of experience in us tricky post

> Harrington cases might be worth considering. A consult does not

mean

> that you are agreeing to surgery...it will just give you a chance

to

> understand what yardstick you will need to use to evaluate any

> surgeon and his/her recommendations. I did have a 2nd opinion with

> DrBoachie, he does not participate in any insurance... so he was

out

> of network and reimbursed at a lower rate by my BC/BS...but I

> figured it was well worth the extra dollars to have that valuable

> info.

>

> My words of wisdom are to be very careful in whatever choices you

> make going forward. Take as much time as you can to educate

yourself

> about your condition and what various surgeons propose to do about

> it. The surgery to take you from where you are right now to where

> you wish to go is considered one of the most complex surgeies out

> there and there are often many complications along the way. Having

> already had an unsucessful revision you are already in need of a

> very experienced surgeon.

>

> While you are going through this you will find lots of information

> and support, as well as friends who have had life experiences much

> like your own. This site is a little awkward for going backward and

> pulling information out of posts, but if you go to the Home page

you

> will see all kinds of information and member stories available

> through the left hand menu. I also recommend going backward throgh

> posts as your time permits.

>

> We are here to help you and hope that we get to know you better in

> the coming days.

>

> Take Care, Cam

>

[Guest guest]

Hi Lori,

Dr. Cammisso may be chief of spine surgery at Hospital fro Special Surgery, but Dr. Boachie is chief of the scoliosis service there. As far as I know, while Dr. Commisso is a very good spine surgeon, Dr. Boachie has far more experience dealing with scoliosis and past surgeries for scoliosis with ac Harrington Rod. The right doctor for us is not only a spine specialist, but a spine specialist whose sub-specialty is revision surgery following a long fusion for scoliosis with a Harrington Rod. I urge you to contact Dr. Boachie's office. (Dr. Boachie did my revision surgery and revision surgery for several of the Group's members.)

Also, sometimes, when an insurance company is made to understand that what you need is very specialized care that only an out of service doctor can provide, they will pay for that out-of-service doctor.

Good Luck.

Bonnie

[Guest guest]

Thank you so much Bonnie for your words, I dont know where to turn anymore for help, I am so so thankful for this group and I am so glad I spent time looking on computer for it.

No one in my area knows anything about harrington rods, they tell me things like, omg, that is so years ago......etc....and that I am a physicians nightmare with all my problems(many others as well as scoliosis) but I laugh along with them becuase if i dont, i would cry.

And family and friends dont understand why I am depressed???

From: Bonnie <bonnie@...>Subject: [ ] Re: New to this group Date: Wednesday, October 29, 2008, 7:04 PM

Hi Lori,

Dr. Cammisso may be chief of spine surgery at Hospital fro Special Surgery, but Dr. Boachie is chief of the scoliosis service there. As far as I know, while Dr. Commisso is a very good spine surgeon, Dr. Boachie has far more experience dealing with scoliosis and past surgeries for scoliosis with ac Harrington Rod. The right doctor for us is not only a spine specialist, but a spine specialist whose sub-specialty is revision surgery following a long fusion for scoliosis with a Harrington Rod. I urge you to contact Dr. Boachie's office. (Dr. Boachie did my revision surgery and revision surgery for several of the Group's members.)

Also, sometimes, when an insurance company is made to understand that what you need is very specialized care that only an out of service doctor can provide, they will pay for that out-of-service doctor.

Good Luck.

Bonnie

[Guest guest]

Hi Faye,

I feel for you. I didn't have I'm 37 and have been on this diet since

April. It has already helped me tremendously, after being sick for

years and nothing else did.

You will probably hear from Bee, this group's owner, but I just wanted

to let you know that Bee's program is first about eating healthy food

that will in turn recover your immunity system, and your body's natural

abilities to heal itself. Strong anti-fungal antibiotics and drugs that

you are taking will not help. There are many people in this group who

reported that, and I'm one of them.

You have already understood that doctors dont' know or are not

interested to really help. So the only way to heal yourself and get

your health and life back is to learn and read. You need to go to Bee's

website http://www.healingnaturallybybee.com/, and learn the basics of

how this program works.

All the best to you,

Dejana