New Member

Posted January 3, 2005 · January 3, 2005

Hi Mickel, & welcome-

We haven't had to many people with Klinefelter's here, glad to have you. We

just had a new person with it join in the last 10 days. Maybe we can build up

more people with specific info on KS. While there isn't too much specific KS

info. here, we can really help with TRT issues. Stuff the docs don't know or

forget to mention. Like understanding how TRT increases male estrogens

(which increases chances of gynecomastia), and what to do about it.

What kind of HRT will you be doing? Injections, patches or gels? Do you have

recent labs results for T?

Y'all come back, y'here?

Bruce

>

> Hi

>

> This group was referred to me by a friend. I am in my 40's and have

> known that I have Klinefelter's for nearly 30 years, having been

> diagnosed with a buccal smear. I initially read up on the syndrome,

> became frightened, and put it back on the shelf for a number of years.

>

> During my college years, I had bilat. gynecomastia reduction surgery

> and have been aware of other conditions that are associated with the

> syndrome.

>

> Due to my friend's pursuasion, or shall I say nagging [sorry T.], I

> talked to my M.D. a few mo. back and got the TRT RX's, had them

> filled @ the pharmacy and parked them in the closet until I was ready

> to deal with them. Today, 01/01/05 I decided to start the hormone

> replacement journey.

>

> Though the group mentions Klinefelter's, there are few posts

> concerning the syndrome, and those that are, well.......I would like

> to point out that all of us are not abherantly behaved. I am a

> professional and a leader.

>

> Are the stats still that Klienfelter's syndrome occurs 1X in 300,000

> male births? My mother was 40 when I was born, and I was told that

> it was a birth defect from conception.

>

> Ya'll can sure generate a large volume of posts I must say!

>

> I would like to see posts from others with Klinefelter's or email me

> directly.

>

> Mikel

Posted January 3, 2005 · January 3, 2005

G'day Mickel

Good info on gynecomastia experiences worldwide

http://www.gynecomastia.org/cgi-bin/gyne_yabb/YaBB.cgi

Bruce <bruceharvey@...> wrote:

Hi Mickel, & welcome-

We haven't had to many people with Klinefelter's here, glad to have you. We

just had a new person with it join in the last 10 days. Maybe we can build up

more people with specific info on KS. While there isn't too much specific KS

info. here, we can really help with TRT issues. Stuff the docs don't know or

forget to mention. Like understanding how TRT increases male estrogens

(which increases chances of gynecomastia), and what to do about it.

What kind of HRT will you be doing? Injections, patches or gels? Do you have

recent labs results for T?

Y'all come back, y'here?

Bruce

>

> Hi

>

> This group was referred to me by a friend. I am in my 40's and have

> known that I have Klinefelter's for nearly 30 years, having been

> diagnosed with a buccal smear. I initially read up on the syndrome,

> became frightened, and put it back on the shelf for a number of years.

>

> During my college years, I had bilat. gynecomastia reduction surgery

> and have been aware of other conditions that are associated with the

> syndrome.

>

> Due to my friend's pursuasion, or shall I say nagging [sorry T.], I

> talked to my M.D. a few mo. back and got the TRT RX's, had them

> filled @ the pharmacy and parked them in the closet until I was ready

> to deal with them. Today, 01/01/05 I decided to start the hormone

> replacement journey.

>

> Though the group mentions Klinefelter's, there are few posts

> concerning the syndrome, and those that are, well.......I would like

> to point out that all of us are not abherantly behaved. I am a

> professional and a leader.

>

> Are the stats still that Klienfelter's syndrome occurs 1X in 300,000

> male births? My mother was 40 when I was born, and I was told that

> it was a birth defect from conception.

>

> Ya'll can sure generate a large volume of posts I must say!

>

> I would like to see posts from others with Klinefelter's or email me

> directly.

>

> Mikel

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

Posted January 3, 2005 · January 3, 2005

Hi Mickel, & welcome-

We haven't had to many people with Klinefelter's here, glad to have you. We

just had a new person with it join in the last 10 days. Maybe we can build up

more people with specific info on KS. While there isn't too much specific KS

info. here, we can really help with TRT issues. Stuff the docs don't know or

forget to mention. Like understanding how TRT increases male estrogens

(which increases chances of gynecomastia), and what to do about it.

What kind of HRT will you be doing? Injections, patches or gels? Do you have

recent labs results for T?

Y'all come back, y'here?

Bruce

>

> Hi

>

> This group was referred to me by a friend. I am in my 40's and have

> known that I have Klinefelter's for nearly 30 years, having been

> diagnosed with a buccal smear. I initially read up on the syndrome,

> became frightened, and put it back on the shelf for a number of years.

>

> During my college years, I had bilat. gynecomastia reduction surgery

> and have been aware of other conditions that are associated with the

> syndrome.

>

> Due to my friend's pursuasion, or shall I say nagging [sorry T.], I

> talked to my M.D. a few mo. back and got the TRT RX's, had them

> filled @ the pharmacy and parked them in the closet until I was ready

> to deal with them. Today, 01/01/05 I decided to start the hormone

> replacement journey.

>

> Though the group mentions Klinefelter's, there are few posts

> concerning the syndrome, and those that are, well.......I would like

> to point out that all of us are not abherantly behaved. I am a

> professional and a leader.

>

> Are the stats still that Klienfelter's syndrome occurs 1X in 300,000

> male births? My mother was 40 when I was born, and I was told that

> it was a birth defect from conception.

>

> Ya'll can sure generate a large volume of posts I must say!

>

> I would like to see posts from others with Klinefelter's or email me

> directly.

>

> Mikel

Posted January 3, 2005 · January 3, 2005

Thanks guys for the encouragement and advice. I had a breast

reduction done in my 20's, now in my 40's. I book marked the

gynecomastia website and will explore when time permits. This is an

excellent group and I am impressed with the forum. Mike.

> >

> > Hi

> >

> > This group was referred to me by a friend. I am in my 40's and

have

> > known that I have Klinefelter's for nearly 30 years, having been

> > diagnosed with a buccal smear. I initially read up on the

syndrome,

> > became frightened, and put it back on the shelf for a number of

years.

> >

> > During my college years, I had bilat. gynecomastia reduction

surgery

> > and have been aware of other conditions that are associated with

the

> > syndrome.

> >

> > Due to my friend's pursuasion, or shall I say nagging [sorry T.],

I

> > talked to my M.D. a few mo. back and got the TRT RX's, had them

> > filled @ the pharmacy and parked them in the closet until I was

ready

> > to deal with them. Today, 01/01/05 I decided to start the

hormone

> > replacement journey.

> >

> > Though the group mentions Klinefelter's, there are few posts

> > concerning the syndrome, and those that are, well.......I would

like

> > to point out that all of us are not abherantly behaved. I am a

> > professional and a leader.

> >

> > Are the stats still that Klienfelter's syndrome occurs 1X in

300,000

> > male births? My mother was 40 when I was born, and I was told

that

> > it was a birth defect from conception.

> >

> > Ya'll can sure generate a large volume of posts I must say!

> >

> > I would like to see posts from others with Klinefelter's or email

me

> > directly.

> >

> > Mikel

>

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

>

Posted January 3, 2005 · January 3, 2005

Hi Mikel,

Thanks back atcha, glad you're here.

You may already know there's a paradox with TRT: It can help prevent

gynecomastia, but it help cause it too. Has your doc mentioned how

supplemental T can convert to estrogens? Some docs don't even know about

that, and their patients have limited or no success with TRT.

Bruce

>

> Thanks guys for the encouragement and advice. I had a breast

> reduction done in my 20's, now in my 40's. I book marked the

> gynecomastia website and will explore when time permits. This is an

> excellent group and I am impressed with the forum. Mike.

--

Posted January 4, 2005 · January 4, 2005

Here is a link to a mixed gender discusson.

http://www.findarticles.com/p/articles/mi_m1511/is_1_21/ai_58398807/pg

_1

> > >

> > > Hi

> > >

> > > This group was referred to me by a friend. I am in my 40's

and

> have

> > > known that I have Klinefelter's for nearly 30 years, having

been

> > > diagnosed with a buccal smear. I initially read up on the

> syndrome,

> > > became frightened, and put it back on the shelf for a number of

> years.

> > >

> > > During my college years, I had bilat. gynecomastia reduction

> surgery

> > > and have been aware of other conditions that are associated

with

> the

> > > syndrome.

> > >

> > > Due to my friend's pursuasion, or shall I say nagging [sorry

T.],

> I

> > > talked to my M.D. a few mo. back and got the TRT RX's, had them

> > > filled @ the pharmacy and parked them in the closet until I was

> ready

> > > to deal with them. Today, 01/01/05 I decided to start the

> hormone

> > > replacement journey.

> > >

> > > Though the group mentions Klinefelter's, there are few posts

> > > concerning the syndrome, and those that are, well.......I would

> like

> > > to point out that all of us are not abherantly behaved. I am a

> > > professional and a leader.

> > >

> > > Are the stats still that Klienfelter's syndrome occurs 1X in

> 300,000

> > > male births? My mother was 40 when I was born, and I was told

> that

> > > it was a birth defect from conception.

> > >

> > > Ya'll can sure generate a large volume of posts I must say!

> > >

> > > I would like to see posts from others with Klinefelter's or

email

> me

> > > directly.

> > >

> > > Mikel

> >

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

> >

Posted January 5, 2005 · January 5, 2005

Hi ,

Antidepressants in the SSRI (selective serotonin reuptake inhibitor) class like

Lexapro often have sexual side effects like the ones you describe. It could be

that men with low T are more succeptible to them.

Talk with your doc about switching to an antidepressant less likely to cause

sexual side effects. Possibly bupropion (Wellbutrin) or nefazodone (Serzone).

Make sure it works well as an antidepressant for you. They doesn't work for

everyone. I once caught myself thinking: " The side effects are gone, but why

am I so depressed? " Duh.

Possible causes of reduced results with AndroGel: (a) the supplemental T has

predictably shut down natural T production, so your total T is back near where

you started; ( supplemental T is converting excessively to estradiol (E2), an

estrogen that can offset supplemental T benefits; © your skin absorption is

somehow decreasing; or (d) a combination of these.

Tests should include AT LEAST total T, free T and estradiol, run every 4-6

weeks until levels stabilize with desired results. I hope you'll post the latest

results (incl. ranges) when you get them.

Bruce

>

> I just joined and I'm looking forward t learning a lot.

> I'm recovering from a Heart Bypass and have a little time off now.

> My cholesterol id very high, Testosterone arround 300, and I take 40

> Mg of Lexapro antidepressants dailey along with sythroid for inactive

> thyroid. I started also with Androgel 1%. It seamed to give me a lot

> of energy at first but seams in-effective lately.

> I don't know the latests test results. I also have very little sex

> drive and problems sleeping, as a side-effect of the antidepressant.

> I'm also onlt 40 years old from a log family history of Heart

> problems and depresion, scandinavian decent.

> Thanks in advance for all of the support this group offers,

> Sincerely,

Posted January 5, 2005 · January 5, 2005

Hi Susie....

I can relate somewhat to your situation...I have Lupus not SD....I

have been in remission for 14 months. I never stopped taking a

maintenance dose of Minocin...100mg M-W-F....I went through a vaginal

biopsy in Nov 2004.....It through me into a flare. At first it was

my right knee...I couldn't walk or bend the knee for 2 1/2

days....Then Christmas night my left wrist blew up an I couldn't bend

or rotate it...lots and lots of pain. 2 1/2 days later it subsided.

I did up my Minocin to 100 mg everyday with the fist on set of the

flare in the knee...It worked. I am now in the process of lowering

the Minocin to M-W-F...I am doing this slowly.

For me, Susie, I would never stop the Minocin...Just not worth it. I

hope you have a good AP doc....

Hope you are able to get everything back under control.

Barb

>

> Hi, I'm Susie. I had a hysterectomy in Oct. 2004. I had been on

> minocycline for about 2 1/2 years and stopped taking it last June.

> I was in " remission " until the post hysterectomy. I believe the

> surgery threw my body into the hyper scleroderma mode. I started

> taking the minocycline again. I am so upset that this is coming

> back. Has anyone else experienced a recurrance of this after

having

> surgery? I am developing tight skin from my lower abdomen up to my

> shoulders. Help!!! I am fighting depression due to this. Thanks,

> Susie

Posted January 6, 2005 · January 6, 2005

rheumatic new member

>

> Hi, I'm Susie. I had a hysterectomy in Oct. 2004. I had been on

> minocycline for about 2 1/2 years and stopped taking it last June.

> I was in " remission " until the post hysterectomy. I believe the

> surgery threw my body into the hyper scleroderma mode. I started

> taking the minocycline again. I am so upset that this is coming

> back. Has anyone else experienced a recurrance of this after having

> surgery? I am developing tight skin from my lower abdomen up to my

> shoulders. Help!!! I am fighting depression due to this. Thanks,

> Susie

>

> To unsubscribe, email: rheumatic-unsubscribeegroups

>

Posted January 6, 2005 · January 6, 2005

The question is often asked as to whether the AP is a cure. Can I get off

the antibiotics eventually? For some it appears it is a cure, and they are

able to stop the antibiotics, but others need to remain on a maintenance

dose indefinitely. Why?

In my 15 years of experience with this therapy it appears the strength of

the immune system is the key. Those that eat a healthy diet, take

appropriate supplements, drink LOTS of water to flush the daily load of

toxins out, keep the colon clean, exercise, get proper rest, etc. appear to

have the best chance of getting off the drugs and staying off of them.

There are other variables to consider but I won't take the time to discuss

them now.

We need to remember that even though we can recover from these diseases,

there is always a remnant of those organisms in our body that caused the

disease in the first place - ready to strike again the same way or in a

different manner given half a chance.

Ethel

Posted January 6, 2005 · January 6, 2005

Ethel,

What is the recommended ways doing cleaning toxins and colon other than eating a

healthy diet? Is there an article about this subject on www.rheumatic.org?

Thanks,

Jintae

Re: rheumatic new member

The question is often asked as to whether the AP is a cure. Can I get off

the antibiotics eventually? For some it appears it is a cure, and they are

able to stop the antibiotics, but others need to remain on a maintenance

dose indefinitely. Why?

In my 15 years of experience with this therapy it appears the strength of

the immune system is the key. Those that eat a healthy diet, take

appropriate supplements, drink LOTS of water to flush the daily load of

toxins out, keep the colon clean, exercise, get proper rest, etc. appear to

have the best chance of getting off the drugs and staying off of them.

There are other variables to consider but I won't take the time to discuss

them now.

We need to remember that even though we can recover from these diseases,

there is always a remnant of those organisms in our body that caused the

disease in the first place - ready to strike again the same way or in a

different manner given half a chance.

Ethel

To unsubscribe, email: rheumatic-unsubscribeegroups

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

Posted January 6, 2005 · January 6, 2005

Jintae,

Reference is made in the FAQ as to the importance of eating a healthy diet and

detoxing the body, but actual instructions are not included. I will post the

ones I generally use and have found to be effective if you are interested.

Ethel

Re: rheumatic new member

The question is often asked as to whether the AP is a cure. Can I get off

the antibiotics eventually? For some it appears it is a cure, and they are

able to stop the antibiotics, but others need to remain on a maintenance

dose indefinitely. Why?

In my 15 years of experience with this therapy it appears the strength of

the immune system is the key. Those that eat a healthy diet, take

appropriate supplements, drink LOTS of water to flush the daily load of

toxins out, keep the colon clean, exercise, get proper rest, etc. appear to

have the best chance of getting off the drugs and staying off of them.

There are other variables to consider but I won't take the time to discuss

them now.

We need to remember that even though we can recover from these diseases,

there is always a remnant of those organisms in our body that caused the

disease in the first place - ready to strike again the same way or in a

different manner given half a chance.

Ethel

To unsubscribe, email: rheumatic-unsubscribeegroups

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

Posted January 6, 2005 · January 6, 2005

Ethel,

Would you please post the instruction of how to detoxicate body and clean colon?

It would save a lot of my time to search for ones that actually work.

Thanks,

Jintae

Re: rheumatic new member

The question is often asked as to whether the AP is a cure. Can I get off

the antibiotics eventually? For some it appears it is a cure, and they

are

able to stop the antibiotics, but others need to remain on a maintenance

dose indefinitely. Why?

In my 15 years of experience with this therapy it appears the strength of

the immune system is the key. Those that eat a healthy diet, take

appropriate supplements, drink LOTS of water to flush the daily load of

toxins out, keep the colon clean, exercise, get proper rest, etc. appear

to

have the best chance of getting off the drugs and staying off of them.

There are other variables to consider but I won't take the time to discuss

them now.

We need to remember that even though we can recover from these diseases,

there is always a remnant of those organisms in our body that caused the

disease in the first place - ready to strike again the same way or in a

different manner given half a chance.

Ethel

To unsubscribe, email: rheumatic-unsubscribeegroups

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

Posted January 6, 2005 · January 6, 2005

Jintae,

Since your request is the only one I've received for this information, I'll

send each of these cleanses to you separately from my files.

Ethel

Re: rheumatic new member

>

> The question is often asked as to whether the AP is a cure. Can I

> get off

> the antibiotics eventually? For some it appears it is a cure, and

> they are

> able to stop the antibiotics, but others need to remain on a

> maintenance

> dose indefinitely. Why?

>

> In my 15 years of experience with this therapy it appears the

> strength of

> the immune system is the key. Those that eat a healthy diet, take

> appropriate supplements, drink LOTS of water to flush the daily load

> of

> toxins out, keep the colon clean, exercise, get proper rest, etc.

> appear to

> have the best chance of getting off the drugs and staying off of

> them.

>

> There are other variables to consider but I won't take the time to

> discuss

> them now.

>

> We need to remember that even though we can recover from these

> diseases,

> there is always a remnant of those organisms in our body that caused

> the

> disease in the first place - ready to strike again the same way or

> in a

> different manner given half a chance.

>

> Ethel

>

> To unsubscribe, email: rheumatic-unsubscribeegroups

>

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

>

Posted February 2, 2005 · February 2, 2005

Dear ,

Welcome to our group. You are in good company. There are a lot of great

people in this group and a lot of them are from Australia. So you should

feel right at home. This is a great site to find information, cry, laugh or

just talk to people who understand how this disease can affect your daily

life. I hope you write in often. Take care and welcome. Love, Fran

*

Hi there to all

I live in Albury in New South Wales Australia. I am 33 years of age married

with 5 dogs.

I was diagnosed with PA about three years ago but feel that I probably had

it for about 3 years before that.

Currently I see a fantastic specialist in Melbourne about every 3 months.

He has been great very direct and speaks in english terms that I understand.

At the moment I take an array of durgs including the Methatrexate, Arava,

Mobic and folic acid supplement.

>From time to time I have flair ups and so far have been affected in the

Ankle left leg, middle toe left leg and elbow left arm.

I look forward to gathering information from this list and learning more

about how other sufferers get by on a day to day basis.

Regards

KIRSTIN BULLEN-MANN

..

Posted February 3, 2005 · February 3, 2005

Hi Kirstin,

I wanted to welcome to our wonderful group. Sorry about your PA-good thing you

have a good Rheumy.

God Bless, Sue.

bullenmannk <bullenmannk@...> wrote:

Hi there to all

I live in Albury in New South Wales Australia. I am 33 years of age married

with 5 dogs.

I was diagnosed with PA about three years ago but feel that I probably had it

for about 3 years before that.

Currently I see a fantastic specialist in Melbourne about every 3 months. He

has been great very direct and speaks in english terms that I understand.

At the moment I take an array of durgs including the Methatrexate, Arava, Mobic

and folic acid supplement.

From time to time I have flair ups and so far have been affected in the Ankle

left leg, middle toe left leg and elbow left arm.

I look forward to gathering information from this list and learning more about

how other sufferers get by on a day to day basis.

Regards

KIRSTIN BULLEN-MANN

Posted February 7, 2005 · February 7, 2005

You may have seronegative RA. It is just a serious at seropositive

RA, but your labs do not reveal the typical RA markers.

The treatment is the same for both types of RA. Recent research shows

that about 35% of RA is seronegative. Talk with your Rheumy, and if

you don't like what your hear, go to another Rheumy until you get the

best care possible.

>

> Hi all. I am new to this group after doing some online research

> into probable/possible causes for why I have been feeling so

> crummy. Forgive me if this seems lengthy...but I have joint

> pain/stiffness/slight swelling in feet and hands every morning (no

> deformity or redness)for about 30-45 mins after rising...lots of

> other joint aches/pains off and on throughout the day most days.

> Feel tired and achy all the time...sometimes think I must be

getting

> the flu the way everything hurts...but never do. ANA titer is

> positive at 1:320 but not enough that it caused great concern with

> first rheumatologist I saw. C-Reactive Protein is elevated quite

> high...something like 8 times what it should be normally. Other

> blood screening panels for RA and lupus were unremarkable...so I

> have no clear diagnosis. Seeing another rheumatologist next month

> (took 12 weeks for appt)for second opinion on advice of my GP. My

> question...did any of you have trouble getting a diagnosis of your

> RA, Lupus or Fibromyalgia? I know I have OA...had knee surgery last

> year to repair torn meniscus and clean out all the crud from the

> arthritis...other one will need to be done at some point too. It's

> just pretty frustrating to only be treating symptoms and not trying

> to get to the root of the problem.

>

> Thanks for any insight...DT

Posted February 7, 2005 · February 7, 2005

Welcome - I hate to discourage you Debbie- but it took almost 12 years before I

had a positive rheumatoid factor-and diagnosis- and there was a discussion of

rheumatoid or lupus a couple of years prior to those first visits with a

rheumatologist. Now, understand, I have been diagnosed since 1988- and tests are

far more sophisticated then they were back in the old days. I was told initially

that many of the diseases were treated the same - so a definitive diagnosis was

not paramount if they could treat anyway. I had a good working relationship with

my family doctor and the rheumatologist I went to when I was away at school- and

they also worked together. We were very careful about infections and quick

treatment of same. Drug therapies were much different then- anyone here- even

hear of butisolidin? I also took alot of coated aspirin. Fortunately for me- I

have been lucky and the disease- in terms of permanent damage has been very

slowly progressive- I am still working- as an attorney. I am currently on

prednisone, MTX,

and remicade for the RA. I take aciphex, a variety of vitamin

supplement-including folic acid- and other things to treat side effects. I am 50

now and in many ways - have grown up with my arthritis. I really don't have many

memories pre stiffness and pain. Hope they are able to diagnose quickly and

effectively for you - and treat quickly. Welcome again.

Big Hugs,

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

From: " Debbie " <dthomasathome@...>

>

> Hi all. I am new to this group after doing some online research

> into probable/possible causes for why I have been feeling so

> crummy. Forgive me if this seems lengthy...but I have joint

> pain/stiffness/slight swelling in feet and hands every morning (no

> deformity or redness)for about 30-45 mins after rising...lots of

> other joint aches/pains off and on throughout the day most days.

> Feel tired and achy all the time...sometimes think I must be getting