hello all

July 22, 2004

On Thu, 22 Jul 2004 10:18:30 -0700 (PDT), you wrote:

>Thanks I have to keep this one.

>Phil

It's far far funnier if you hear her sing it of course.

- - - -

Just another albino black sheep

July 22, 2004

On Wed, 21 Jul 2004 14:36:34 -0700, you wrote:

>On Wed, 21 Jul 2004 21:13:56 -0000, you wrote:

>

>>

>>Funny you should mention that list. I called one of the docs on the

>>list that was ten miles away. She had never heard of the

>>organization that was sponsoring this and wasn't taking new patients

>>for TRT. The bulk of the other docs are 100 miles away, but I may

>>make a few calls. The endo doc I'm seeing right now is willing to

>>work with on keeping my levels at the top and getting the right blood

>>tests. I would like to find one that considers E2 levels an

>>important hormone to check as well. Thanks!

>

>I've got an article some where on what's called E2 and Testosterone

>cross talk from a medical journal. Let me look for it.

>

>If I don't post in the next day or two give me a reminder nudge.

Here's a couple. My thinking is if you can show your endo these to

help her focus on it. Also there's an article in the files section or

link section about older males have low T treated by only addressing

heir E2 levels with Arimidex.

http://www.asiaandro.com/1008-682X/5/307.htm

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_uids=1\

2699299 & dopt=Abstract

- - - -

Just another albino black sheep

July 23, 2004

Your Testosterone level is too low. You need to address it. You also

need to find an entirely new doctor. Your new doctor doesn't have to

be a Uro or an Endo, it doesn't matter what kind of doctor, but your

new doctor does have to be one with an open mind and preferably one

who treats men with TRT and hormone therapy.

First thing you should do though, is buy a copy of " The Testosterone

Syndrome " by Eugene Shippen and read it. This will give you a good

basis of understanding of how the whole hormone system works and

what hormones are necessary for in the body.

When you do eventually address your hormone problem, there are

several factors to consider, the most important is first finding out

whether or not your are primary, secondary or a mix of both. Jumping

on Testosterone replacement is usually not the right thing to do.

You have to figure out as best you can, why your hormones are low in

the first place and attack the problem with that knowledge.

The fact is though, your t level is too low and is almost definitely

the cause of your " low drive " . However, jumping to a prescription of

androgel or the like is not the ideal solution.

Armyguy

> I am new to this group and I do have a question that hopefully can

be

> answered. I just began having the blood work done to find out why

I

> have low drive. One of the tests run was for total testosterone.

The

> level that cam back was 295 and the results stated that I was

normal

> because the range for the test was between 260 and 1000. This

being

> the case my urologist told me that since it was in the " Normal "

range

> no doctor in their right mind would try to increase that level

> without being concerned about a malpractice suit down the road if

> something were to happen. I personally think that 295, being at

the

> low end of the scale, could be increased to a higher level without

> much worry. Am I wrong in this thought process?

>

> TIA

August 11, 2004

The positive is that it usually takes less drug to get your levels

up. The negative is that it does this by using a somewhat greasy base

with a special - and smelly - chemical that increases absorption.

Personally, the smell gets to me. I prefer the gel...

Regards,

K4

> Hello again to everyone in this group. I was able to take a lot of

> the information that you all had provided me with to my doctors

> appointment today and after we discussed a number of things, and

the

> doctor took a look at my latest round of blood work, he decided

that

> I should, in fact, be put on some testosterone treatment. I was

> given Testim. He told me that it was similar to Androgel. Does

> anyone in the group know about this drug and what the positives or

> negatives might be? Any information would be appreciated.

>

> Thanks

> Dave(tshooter66)

August 12, 2004

Hi Dave I am on Testim and like it very much. It has a smell to it that I did

not like at first but I got use to it. The best way to put it on is to if you

are on one tube put one half on your upper arms and the tops of your shoulders

and rub it in until dry. The wate 10 min. befor putting on a shirt. At night I

sleep naked so I shower to make sure my wife does not get it on her. If you are

on 2 tubes then put one on each side.

Phil

tshooter66 <tshooter1@...> wrote:

Hello again to everyone in this group. I was able to take a lot of

the information that you all had provided me with to my doctors

appointment today and after we discussed a number of things, and the

doctor took a look at my latest round of blood work, he decided that

I should, in fact, be put on some testosterone treatment. I was

given Testim. He told me that it was similar to Androgel. Does

anyone in the group know about this drug and what the positives or

negatives might be? Any information would be appreciated.

Thanks

Dave(tshooter66)

December 19, 2004

Try:

http://www.tuneupyourt.com/

Check the list for doctors in your state.

>

> yesterday i posted that i wanted to take the steroid d-bol as a cure

> for low test. everyone was asking where i live, so i can find a good

> doc which i desperately need. i live in the great state of

> wisconsin. i have had tests for total test, fsh,lh, ect. my first

> test (3.33 total test, was low in fsh and borderline lh), was done in

> the afternoon so the endo i saw wanted re-testing done in the morning

> to show optimal test levels (my guess is so i read even higher and

> thus wont have to be supplimented) im pretty sure i have some kind of

> testosterone deficit, due to my constant depression and lethargy.

> last week i began taking some supplimenting with herbs and minerals

> like : zinc, indole-3-carbinol, chrysin, piperine, and saw palmetto

> since i heard these are good for men with low readings. i

> discontinued use of lexapro at 10 mg because i read antidepressants

> can lead to testosterone deficit. however, i did notice a change in

> my work ethic, but i still have periods of depression and insomina

> that i would like to clear up, because i still have 2 yrs of college

> to get through where memory is very crucial, i know there has to be a

> complex problem medically and i hear alot of talk about depression

> from low test and thyroid (which i recently had tested but have not

> gotten results from yet) any suggestions or help that someone can

> provide would be much appreciated.

>

> thanks,

>

> john g

December 19, 2004

it would be a big help if you posted your blood tests with the ranges. You

say testosterone 3.33. Plus you need to read this the AACE Guildelines on Low

T. Then you will have a working nolage of Low T. and when a Dr. looks at you

test lets say your Total Testosterone came back at 400 and the range is 262 to

1593 ng/dl yes you are in range but normal for a 80 yr. old man. You tests

should be in the upper 1/3 of the range for a young man.

http://www.aace.com/clin/guidelines/hypogonadism.pdf

Print this and give it to the Dr.

If you need to find a new Dr. go here and at the top right click on Find A Dr.

then start calling and ask how many men they treat and do they test for high E2

Estradiol. Ask if they us Hch for secondary low t and Arimidex for high E2.

http://www.tuneupyourt.com/

There are not a lot of Dr.'s Endro's and all that know how to treat this. You

need to find out first why you are low before getting treated.

Phil

johnny_g42_2 <johnnyg42@...> wrote:

yesterday i posted that i wanted to take the steroid d-bol as a cure

for low test. everyone was asking where i live, so i can find a good

doc which i desperately need. i live in the great state of

wisconsin. i have had tests for total test, fsh,lh, ect. my first

test (3.33 total test, was low in fsh and borderline lh), was done in

the afternoon so the endo i saw wanted re-testing done in the morning

to show optimal test levels (my guess is so i read even higher and

thus wont have to be supplimented) im pretty sure i have some kind of

testosterone deficit, due to my constant depression and lethargy.

last week i began taking some supplimenting with herbs and minerals

like : zinc, indole-3-carbinol, chrysin, piperine, and saw palmetto

since i heard these are good for men with low readings. i

discontinued use of lexapro at 10 mg because i read antidepressants

can lead to testosterone deficit. however, i did notice a change in

my work ethic, but i still have periods of depression and insomina

that i would like to clear up, because i still have 2 yrs of college

to get through where memory is very crucial, i know there has to be a

complex problem medically and i hear alot of talk about depression

from low test and thyroid (which i recently had tested but have not

gotten results from yet) any suggestions or help that someone can

provide would be much appreciated.

thanks,

john g

December 20, 2004

Could he try contacting one of the componding pharmacies as well to

find a good doc. Either that " College " one or a local compounding

pharmacy?

Mark

October 12, 2005

Hi Deirdre,

I do know how you feel.I was diagnosed when I was 21 although I had the

disease much longer than that. I'm now 27. Now that your on Enbrel and

it's working for you that's a good step. I too am on Enbrel I have been

on it for nearly the past three years (Jan. will be 3 yrs.) I have

noticed a big difference since starting it. I know what it is like to

have no one who understands, I still have days where it's like that but

on those days I have to remember that to come in my groups and check in

and just know that i'm not alone. There are always going to be good

days and bad days. I wish you luck!

Keli

>

> hi everyone. I am a new member. my name is Deirdre. I am 21 years old

> and was diagnosed with PA about 2 months ago, with symptoms for about

a

> year. I began taking enbrel about 2 weeks ago, and let me just say

its

> beena miracle. I can aactually walk again. I even went to the

> gym....somehting I haven't been able to do in months. Enbrel is my

life

> saver. I would recommend it to anyone.

> Sometimes PA makes me very sad and I cry about it when i'm alone.

> why me? I'm sure i'm not the only one who feels bad for herself

> sometimes. Friends of mine don't get it. They try but they don't know

> how it feels. I hope this group can help me find some inner peace....

>

October 13, 2005

Hi Dierdre,

I am 47 and was diagnosed a little over a year ago. I haven't made it to Enbel

yet. I am on Methotrexate, Arthrotec, folic acid and pain killers. I know how

you feel with your friends not understanding. I used to lift weights all the

time and now it can hurt to just try to pick up a small weight. It's hard for

other people to understand how you can be in such pain when you look okay from

the outside and how you can't do the things you used to be able to do. I know I

had a hard time understanding what my niece was experiencing with her

fibermyalgia until I starting going through it myself. At least now we can call

each other and talk and at least empathize with each other when others around us

don't understand. It's amazing some of the stupid advise I get from others who

don't even have a clue what this disease is all about. I try to explain it to

them, but they don't get it. Hang in there and stay on line. I don't write in

much but just reading what other people experience

helps me to know I am not alone in the fight against this disease and also

gives helpful information. I am hopeful that one day this disease will go into

remission. I just do the best I can to keep a positive attitude, even though it

can be very hard at times. Lord knows I have gotten very down about it as well.

This is a place where you can talk to others who do understand.

Deb in land

[Editor's Note: We cannot really understand what it felt like to the people of

the Gulf Coast who lost their homes due to the hurricane. We cannot know what

it feels like to lose a child unless we have lost one. It is equally

unreasonable to expect people to understand what it is like to have PA unless

they have experienced something similar. Just as we cannot understand what

others go through, we shouldn't expect our friends or family to understand what

it is like to live with PA. It is best NOT to worry about what others think.

We cannot expect others to think highly of us unless we think highly of

ourselves. Living with a disease is a difficult and sometimes lonely thing, but

we have many other things in life to be joyful about, so there is nothing to be

gained by placing unfair expectations on others. We should not measure our

value on what others think of us, so it is best not to worry about them. Kathy

F.]

blackjello420 <hughes5@...> wrote:

hi everyone. I am a new member. my name is Deirdre. I am 21 years old

and was diagnosed with PA about 2 months ago, with symptoms for about a

year. I began taking enbrel about 2 weeks ago, and let me just say its

beena miracle. I can aactually walk again. I even went to the

gym....somehting I haven't been able to do in months. Enbrel is my life

saver. I would recommend it to anyone.

Sometimes PA makes me very sad and I cry about it when i'm alone.

why me? I'm sure i'm not the only one who feels bad for herself

sometimes. Friends of mine don't get it. They try but they don't know

how it feels. I hope this group can help me find some inner peace....

October 13, 2005

In a message dated 10/12/2005 7:34:54 P.M. Eastern Standard Time,

hughes5@... writes:

Sometimes PA makes me very sad and I cry about it when i'm alone.

why me? I'm sure i'm not the only one who feels bad for herself

sometimes.

Hi Deidre...I think we can all relate to feeling bad for ourselves:-)

Something really strange has been happening to me lately...every time I start to

feel sorry for myself, someone will tell me about a friend of a friend who's

been diagnosed with cancer, or I'll be in the supermarket and the bagger will

have a developmental issue, and I'll realize that as bad as this is, it could

always be worse. It's happening so frequently that it can't be a

coincidence...whether its god or karma I have no idea, but someone wants me to

get that

message:-)

I am so sorry you have PA too. Maybe you should ask your doctor if he or

she has any patients your age with PA or RA or lupus? They can't give out

names, but if you offered your name and number, maybe you could find a friend

who

would be better able to understand. I was diagnosed in my early 30's, and I

can sympathize but I know if must be much harder in your 20's.

Keep your chin up,

November 2, 2005

Greetings and welcome !

I am fairly new, but have been a " lurker " for quite some time.

I will give you the same advice that most newbies are given.

Read the Files section, that will give you plenty to ponder.

The Links section is also very good.

Ask questions, the people on here are very knowledgeable.

I hope all goes well for you and your child ... :-)

Neil

>

> Hello,

>

> I am a new member and trying to learn all that I can about

autism.My

> son J.R. will be 3 yrs in 2 weeks and he hasn't been talking for

> over a year. He is now seeing a speech pathologist,Early

> Intervention has been out to assess his condition and he has an

> appointment with an neurologist later this month.I am in total

> shock,I thought that he had a hearing problem he had tubes put in

> his ears last April. now it is turning out to be much more

> serious.Was the mercury still being put in vaccines when he was

born?

> he was born in Nov.2002. I am just wondering what is going to

happen

> next,the lady from early intervention told me because of his age he

> will be put into a public school program.He has never been in a

> daycare at all and is very afraid of strangers.I just cant imagine

> sending him to school.he is not potty trained,I havent tried mainly

> due to the speech problem.He speaks using gestures.he will bring

his

> cup when he is thirsty,his blanket when he wants a nap,he will get

> into his chair when he is ready to eat. he has no speech except he

> will say mommy and da da.He is a very loving child.he likes to hug

> and be held and he smiles all the time. I am very afraid because I

> don't know just how serious this might be. any advice would be

> apreciated.

>

November 2, 2005

I'm sure you will get lots of replies from this group. It's a very

supportive place to be. I must say, I remember being where you are

with your son and I remember everything is very overwhelming and

scary - to say the very least.

I would say that you don't have to do anything that you are not

comfortable about. Your son doesn't have to be rushed away to

public school, no questions asked. Take time to check out the

program. I know when my son first when to public preschool, the

program was terrible. Not good for children with autism. The

teachers weren't even trained in autism, although when I sat in a

meeting with the school, suddenly they were all " experts " on what my

son needed.

Check out the different therapies that are available to kids with

autism, including ABA. I would also recommend the book " children

with starving brains " by Dr. J. McCandless. This has become my

bible for biomedical therapies. Read the book.

If your son is diagnosed with autism, there is alot of hope and help

out here. He is so young, and you are already at this group.

You are off to a good start!

shannon

p.s. another good website is www.danasview.net and also

www.gfcfdiet.com. These websites really helped me alot too.

>

> Hello,

>

> I am a new member and trying to learn all that I can about

autism.My

> son J.R. will be 3 yrs in 2 weeks and he hasn't been talking for

> over a year. He is now seeing a speech pathologist,Early

> Intervention has been out to assess his condition and he has an

> appointment with an neurologist later this month.I am in total

> shock,I thought that he had a hearing problem he had tubes put in

> his ears last April. now it is turning out to be much more

> serious.Was the mercury still being put in vaccines when he was

born?

> he was born in Nov.2002. I am just wondering what is going to

happen

> next,the lady from early intervention told me because of his age

he

> will be put into a public school program.He has never been in a

> daycare at all and is very afraid of strangers.I just cant

imagine

> sending him to school.he is not potty trained,I havent tried

mainly

> due to the speech problem.He speaks using gestures.he will bring

his

> cup when he is thirsty,his blanket when he wants a nap,he will get

> into his chair when he is ready to eat. he has no speech except he

> will say mommy and da da.He is a very loving child.he likes to hug

> and be held and he smiles all the time. I am very afraid because I

> don't know just how serious this might be. any advice would be

> apreciated.

>

November 3, 2005

Hello,

I know how scary all this can be especially with a child who cannot talk to you.

My son is now 4 1/2 and has been in our public school system since turning 3. He

did have EI at him since 2 plus we had private ST and OT.

My son was never in day care either. I drove him to school for about a month and

then he started taking the bus. He loves the bus. He loves school. He cried the

first day getting out of the car and stopped once inside the classroom and did

not ever cry again.

My son was also very loving and one thing I was concerned about was other

children being aggressive to him. I talked extensively with our case mgr and his

potential teacher about this. My son is dx PDD-NOS which is on the autism

spectrum.

My son is still not potty trained and the school is great with that. They are

also helping me potty train him.

My son is doing very well is school and loves it. We have a very appropriate

program here for him. This depends on what your child needs and how well your

school system can provide it. I still do a lot of talking to my case mgr, his

teacher and his therapists. My son was one of the first children evaluated for a

new program because I ask about what is going on all the time. I am not pushy

just through.

Best wishes.

Message: 4

Date: Thu, 03 Nov 2005 04:33:49 -0000

From: " snowwhite1488 " <SNOWWHITE1488@...>

Subject: Hello All

Hello,

I am a new member and trying to learn all that I can about autism.My

son J.R. will be 3 yrs in 2 weeks and he hasn't been talking for

over a year. He is now seeing a speech pathologist,Early

Intervention has been out to assess his condition and he has an

appointment with an neurologist later this month.I am in total

shock,I thought that he had a hearing problem he had tubes put in

his ears last April. now it is turning out to be much more

serious.Was the mercury still being put in vaccines when he was born?

he was born in Nov.2002. I am just wondering what is going to happen

next,the lady from early intervention told me because of his age he

will be put into a public school program.He has never been in a

daycare at all and is very afraid of strangers.I just cant imagine

sending him to school.he is not potty trained,I havent tried mainly

due to the speech problem.He speaks using gestures.he will bring his

cup when he is thirsty,his blanket when he wants a nap,he will get

into his chair when he is ready to eat. he has no speech except he

will say mommy and da da.He is a very loving child.he likes to hug

and be held and he smiles all the time. I am very afraid because I

don't know just how serious this might be. any advice would be

apreciated.

November 3, 2005

My son will also be 3 this month and he just started pre-school at the

local school district. He hasn't spoken yet and has a few signs. We

are very excited about him starting school as the program is tailored

to his special needs. You need to make sure your child gets all the

services they need -- this is all negotiated at the IEP meeting.

Let me know if I can answer any more questions. Feel free to e-mail me

too.

Stefan

November 4, 2005

>>I am just wondering what is going to happen

> next,the lady from early intervention told me because of his age he

> will be put into a public school program.He has never been in a

> daycare at all and is very afraid of strangers.I just cant imagine

> sending him to school.

I homeschool my kids, including my autistic son who was non-verbal

until probably age 6. You are not *required* to send your child to

school, it is a choice you can make tho.

>>I am very afraid because I

> don't know just how serious this might be. any advice would be

> apreciated.

Here is my " Stories of Recovery " page, you can read here and see if

any of these interventions sound good for your child

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

Dana

October 9, 2006

Hi ,

Try getting a hot emu oil massage at least twice a week.

<johnskirsch4@...> wrote:

Hello All,

I'm new to the group (even though I have been reading the posts for

awhile).

I'm 39 and live in the Seattle area. I first noticed signs back in

April; I had pain and stiffness in my fingers in both my left and

right hands. I have been a professional guitarist for years and just

related this to overplaying or not stretching. I then " thought " I had

injured my knee but nothing was getting better months later. To back

up a little I was diagnosed with Psoriasis when I was 25 but after

medications and trying to reduce the stress in my life it went away

for the most part with the occasional patch but nothing major.

I work in the tech industry as a contractor and currently do not have

health insurance. I am able to enroll in January. I thought I could

stick it out till then. After reading up on PA on the internet I knew

what was going on and talked to my GP who gave me some pain

medications and told me to stick with ibuprofen (about 1800mg a day)

knowing that the current PA medications can be really expensive and

the whole " pre existing conditions " and insurance company's.

Anyways coming current to today PA has just about affected all my

joints from my jaw to my feet. I am currently barely able to walk or

I should say hobble. The pain in my ankles, feet, knees in just about

unbearable when trying to walk.

Health insurance or not I need to see a rheumatologist ASAP. I have

yet to be diagnosed with PA but after reading the posts here for a

few months I feel like I'm reading my diary.

I noticed there are some people here in the Seattle area and I'm

looking for a recommendation for a rheumatologist that is well versed

in PA any advice would be greatly appreciated.

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

Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+

countries) for 2¢/min or less.

October 9, 2006

hi john i also am in the seattle area and i have had problems for about 30

years. i finally was diagnosed with PA one year ago! it was with the combined

efforts of my group health team that put it together. i am going to the group

health specialty clinic in tacoma, and ive got to say what one doctor lacks

another picks up on. my current rheumy is dr. pandi. he was the only specialist

who " GOT IT " i had regence blue shield for years and tried numerous doctors.

when i switched to Group Health, it was the best move i could have made. they

saw me right away and no time was wasted waiting for an appt. it takes a team

and i have that. my rheumy is pretty text book. so i use my GP for most matters

but dr. Phandi is brilliant when needing to read between the lines. he asked the

right questions and actually did the research. he said he would figure out what

was wrong with me by my next visit and he did.

good luck. it does get better! until then try a hot tub and stretches in the

am and after work. the ibuprophen? i prefer the aleve. dr phandi says you can

take 6 per day. the damp weather up here doesnt help. but this week looks good

and dry!

hang in there

lorrie

good

Lynch <bigslimjim9@...> wrote: