New to the Group

[Guest guest]

hi Dee, glad you are here. HyperT/Graves is very much iodine deficiency--I

had this too. Treatment for me was partial thyroidectomy and no meds for 30

years--no life for 30 years. I am not a big fan of allopathic medicine now.

Gracia

Hello All,

Thanks so much for your help already. I am so glad that I found a group where

people actually talk about why we are here! Ok so first off I live right out

side of Madison. I haven't been in the area long, I am from Kentucky. I moved up

here to go to school a little over a year ago and boy oh boy is it cold and deep

in the IL snow!

I was diagnosed with hypothyroidism. I am on Levothyroxin. The put me on the

50 MCG dosage. My doctor told me he wants to build me into it. I will have more

blood work to determine if it needs to be raised. Is this correct? I hate to

second guess doctors but I don't wanna be led down the wrong path... again.

I have a strong history of hyperthyroidism and Graves Diseases, Dad, Grandaddy

and my late Aunt. My Grandaddy actually lost an eye from Graves disease and have

to have a glass eye most has adult life as they misdiagnosed his many times

before getting it right, by then his eye had bulged so bad they couldn't get it

fixed.

Ok so I think I answered all the questions that were asked. Thanks in advance

for helping me out. I dont like something going on in my body unless I know

every part of it. Have a great day.

Dee

Crystal <sweetnwright@...> wrote:

Oh, Deedra I am so glad you found this group. Many of us here know how you

feel. What meds are you on?

cw

-- New to the Group

Hello, my name is Deedra. I live in Wisconsin and I am 25. I have

just joined the ground and I have just found out within the last week

that I have hypothyroidism. I have had a large increase in weight

over the past couple of years and have been trying so hard to get it

off with no success. I got a trainer and I just couldn't make it

happen and she is the one that prompted me to see my doctor. I have a

family history of thyroid problems, my Granddaddy had Graves Disease.

So I have been on my meds now almost a week and I was just curious

how is it for everyone else. How long before the symptoms start to

die down. I have horrible fatigue headaches and muscle soreness along

with being overweight.

I actually had my thyroid tested back in 2003 and I now know, after

getting a copy of my records from my last doctor, that my thyroid was

low then. It is so frustrating to know that I could have already been

on the road to getting better and getting my life back on track but

my doctor did not pursue it.

Any advice that anyone has to offer I would love to hear it. I feel I

am fighting a lonely battle. My family is all very small and doesn't

understand what I am going through and how hard I have been working

to get nowhere. I have just been the fat sister who eats to much or

isn't active enough when I really do lead a healthy and active

lifestyle.

I look forward to meeting everyone. Have a great night.

Deedra

[Guest guest]

Lab results would be great for us to see. 50 mcg is a

super low dose. See how you feel. I started out on

levothyroxine and then switched to armour ... it saved

my life.

Peace,

P.S. ALWAYS second guess your doctors.

--- Deedra <deedranhughes@...> wrote:

> Hello All,

>

> Thanks so much for your help already. I am so glad

> that I found a group where people actually talk

> about why we are here! Ok so first off I live right

> out side of Madison. I haven't been in the area

> long, I am from Kentucky. I moved up here to go to

> school a little over a year ago and boy oh boy is it

> cold and deep in the IL snow!

>

> I was diagnosed with hypothyroidism. I am on

> Levothyroxin. The put me on the 50 MCG dosage. My

> doctor told me he wants to build me into it. I will

> have more blood work to determine if it needs to be

> raised. Is this correct? I hate to second guess

> doctors but I don't wanna be led down the wrong

> path... again.

>

> I have a strong history of hyperthyroidism and

> Graves Diseases, Dad, Grandaddy and my late Aunt. My

> Grandaddy actually lost an eye from Graves disease

> and have to have a glass eye most has adult life as

> they misdiagnosed his many times before getting it

> right, by then his eye had bulged so bad they

> couldn't get it fixed.

>

> Ok so I think I answered all the questions that

> were asked. Thanks in advance for helping me out. I

> dont like something going on in my body unless I

> know every part of it. Have a great day.

>

> Dee

>

> Crystal <sweetnwright@...> wrote:

> Oh, Deedra I am so glad you found this

> group. Many of us here know how you

> feel. What meds are you on?

> cw

>

> -- New to the Group

>

> Hello, my name is Deedra. I live in Wisconsin and I

> am 25. I have

> just joined the ground and I have just found out

> within the last week

> that I have hypothyroidism. I have had a large

> increase in weight

> over the past couple of years and have been trying

> so hard to get it

> off with no success. I got a trainer and I just

> couldn't make it

> happen and she is the one that prompted me to see my

> doctor. I have a

> family history of thyroid problems, my Granddaddy

> had Graves Disease.

>

> So I have been on my meds now almost a week and I

> was just curious

> how is it for everyone else. How long before the

> symptoms start to

> die down. I have horrible fatigue headaches and

> muscle soreness along

> with being overweight.

>

> I actually had my thyroid tested back in 2003 and I

> now know, after

> getting a copy of my records from my last doctor,

> that my thyroid was

> low then. It is so frustrating to know that I could

> have already been

> on the road to getting better and getting my life

> back on track but

> my doctor did not pursue it.

>

> Any advice that anyone has to offer I would love to

> hear it. I feel I

> am fighting a lonely battle. My family is all very

> small and doesn't

> understand what I am going through and how hard I

> have been working

> to get nowhere. I have just been the fat sister who

> eats to much or

> isn't active enough when I really do lead a healthy

> and active

> lifestyle.

>

> I look forward to meeting everyone. Have a great

> night.

> Deedra

>

>

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

>

>

>

>

> Deedra

>

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

> Never miss a thing. Make your homepage.

>

> [Non-text portions of this message have been

> removed]

>

>

________________________________________________________________________________\

____

Never miss a thing. Make your home page.

http://www./r/hs

[Guest guest]

Hi Annette

I too felt like crap when I first started Urso. Nausea, diarrhoea, itching etc.

It does go away and you will feel a whole lot better. Stick with it as it is

worth it. I have been on Urso for about 2 years and my numbers have been normal

for six months now. I was looking down the barrel of a transplant but this is

well and truly off the agenda. My doc doesn't want to see me for a year!!!

Still have to have regular bloods done but all in all life is back to normal

(almost) so keep your chin up and persevere.

Lindy

PBC/AIH

[ ] New to the group

I'm 45 and was just recently diagnosed with PBC. My doc caught this

only by chance. I was taking antibiotics for Bronchitis that I had

for over a month. My doc was concerned because it lasted so long and

ran blood work. Elevated liver enzymes. So he re-did the blood tests

at least 6 times because he thought the elevation was being caused by

the antibiotics. But they never went down, they in fact went even

higher. So I went onto a specialist and had more bloodwork and a

ultrasound and then a biopsy. AMA test was positive and after 3 long

weeks she called a couple of weeks ago and told me the news of the

PBC. So I am now taking Ursodil, 600mg twice a day. I feel like crap.

Always tired and nausea haunts my days and nights. She says it is the

early stage of PBC. But hearing her just say I have it scared the

crap out of me. I already have Sarcoidosis in the lungs and was

hoping (yes, hoping) it was the Sarcoid affecting my liver, because

believe it or not it is not life threatening. But no, it's just PBC.

Is this nausea common with the Urso, or does it eventually subside.

Any pointers or advice is welcome.

A~

[Guest guest]

Anxiety can cause nausea too. Is your MD assiting you with dealing with this

aspect of PBC? May help along with the other suggestions previously mentioned to

help your nausea subside.

AnnetteP <newhd99@...> wrote: I'm 45 and was just recently

diagnosed with PBC. My doc caught this

only by chance. I was taking antibiotics for Bronchitis that I had

for over a month. My doc was concerned because it lasted so long and

ran blood work. Elevated liver enzymes. So he re-did the blood tests

at least 6 times because he thought the elevation was being caused by

the antibiotics. But they never went down, they in fact went even

higher. So I went onto a specialist and had more bloodwork and a

ultrasound and then a biopsy. AMA test was positive and after 3 long

weeks she called a couple of weeks ago and told me the news of the

PBC. So I am now taking Ursodil, 600mg twice a day. I feel like crap.

Always tired and nausea haunts my days and nights. She says it is the

early stage of PBC. But hearing her just say I have it scared the

crap out of me. I already have Sarcoidosis in the lungs and was

hoping (yes, hoping) it was the Sarcoid affecting my liver, because

believe it or not it is not life threatening. But no, it's just PBC.

Is this nausea common with the Urso, or does it eventually subside.

Any pointers or advice is welcome.

A~

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

Never miss a thing. Make your homepage.

[Guest guest]

Hi Lindy and any others who have responded...your words of

encouragement are much appreciated. Today I actually feel " somewhat "

normal. But every now and then my stomach will turn. May I ask how

long the nausea lasted, days, weeks, months???

It's funny because I noticed I was itching a lot a couple of months

ago. At night especially. My back, my legs, my arms...very annoying.

And also have had problems swallowing for months now too.

I do have " anxiety " , but was diagnosed with that well before the PBC

came along. Regarding my nausea, I am seeing my doctor on Thursday so

we'll what they can do for me.

Just hanging in there and hoping for the best.

Good day to all!

A~

>

> Hi Annette

>

> I too felt like crap when I first started Urso. Nausea, diarrhoea,

itching etc. It does go away and you will feel a whole lot better.

Stick with it as it is worth it. I have been on Urso for about 2

years and my numbers have been normal for six months now. I was

looking down the barrel of a transplant but this is well and truly off

the agenda. My doc doesn't want to see me for a year!!! Still have

to have regular bloods done but all in all life is back to normal

(almost) so keep your chin up and persevere.

>

> Lindy

> PBC/AIH

> [ ] New to the group

>

>

> I'm 45 and was just recently diagnosed with PBC. My doc caught this

> only by chance. I was taking antibiotics for Bronchitis that I had

> for over a month. My doc was concerned because it lasted so long and

> ran blood work. Elevated liver enzymes. So he re-did the blood tests

> at least 6 times because he thought the elevation was being caused by

> the antibiotics. But they never went down, they in fact went even

> higher. So I went onto a specialist and had more bloodwork and a

> ultrasound and then a biopsy. AMA test was positive and after 3 long

> weeks she called a couple of weeks ago and told me the news of the

> PBC. So I am now taking Ursodil, 600mg twice a day. I feel like crap.

>

> Always tired and nausea haunts my days and nights. She says it is the

> early stage of PBC. But hearing her just say I have it scared the

> crap out of me. I already have Sarcoidosis in the lungs and was

> hoping (yes, hoping) it was the Sarcoid affecting my liver, because

> believe it or not it is not life threatening. But no, it's just PBC.

>

> Is this nausea common with the Urso, or does it eventually subside.

>

> Any pointers or advice is welcome.

>

> A~

>

>

>

>

>

>

[Guest guest]

>

> Hi,

> I am new to this group, but have been aware of candida and trying

to get well for years. I will try to read all the files over time,

but I have a couple of initial questions that may help me.

==>Hi . Welcome to our group.

>

> I don't know if I have candida, but an lot of the symptoms look

like me, but when I have been tested by kinseologists they say I

don't. A colonic lady said I did, so maybe she is right??? Any

ideas? I do have endometriosis, but is that always candida related?

==>Endometriosis can be related to candida, and it definitely is

related to a lack of proper nutrients and too many toxins which means

your immune system is severely depressed. That is what my program

helps, so it isn't just a program for curing candida. It will

improve anyone's health because it provides proper nutrients and

eliminates toxins and damaging foods, etc.

>

> I take hardly any supplements and now know why I feel worse when I

> take them. I was going to start liquid chlorophyll, but is this

not recommended now?

==>Then you understand that a proper balance of nutrients is

required, and when you get them, along with diet they will create

healing/detoxifying reactions. No, liquid chlorophyll is not

recommended. It is important that you improve your digestion so

supplements will be absorbed properly, particularly increasing your

stomach acid in the ways suggested in my main candida article " How to

Successfully Overcome Candida " found in our Group's Files (left menu)

in the 2nd folder.

>

> I have been trying to do a variation of this diet for 8 years now,

> but still feel worse. I want to be able to stick to it, but find

it very hard to know what to eat, I know what not to eat, but that

seems to leave nothing, so I fail (I am weak I know). Most

importantly I struggle with breakfast! I can't eat eggs, as I am

allergic!

==>Allergies are very misunderstood by doctors and people alike, and

allergy tests are not accurate in any way. That in addition to the

fact that the antibody theory upon which allergy tests are based is

totally false. Please read articles about allergies found in a

folder on its own in our Group's Files to understand more.

==>The beauty of this diet is that you eat foods direct from nature,

nothing processed, and it is high in " good " fats which provides the

best source of energy for your body. That means that when you lower

carbs your body gets an alternative energy source which is much more

efficient than running your body on carbs.

>

> Is it possible to recover, because I am like a ex-smoker (I don't

> smoke by the way), I can only take a day at a time, the thought of

never eating certain foods again is hard to take, not sugar, I know

that is rubbish, but homemade brown bread, rice, fruit.

==>Smoke does not go into the makeup or construction of the body's

cells, so the damage done was caused more by damaging foods, improper

nutrients and toxins from foods, drinks, drugs, etc. You can have

homemade bread and brown rice in future; but the grains must be

properly prepared first. Even healthy people should only eat 2

fruits per day, and with plenty of good fats to slow the release of

fructose into the system; see more information about the dangers of

fructose at www.mercola.com

You will learn , one step at a time. Take your time and read

carefully. It may be the best thing you've ever done! We are here

to help and support you. Read first and then ask questions.

The best in health, Bee

[Guest guest]

Hi Bee,

Many thanks for your reply. I wonder if fruit is causing me to be

worse then, I have been eating a couple of pieces a day, but I find

this gives me abdmonial pain and diahorrea (spelling?). I am off to

the Dr's again today to have a chat, but I am suffering extreme

anxiety, as my bowel has been terrible since I have had the fruit this

week. I have pale floating stools and I am very anxious about this

symptom.

All I want to do is find things that make me have a normal bowel

movement for once!! I am fed up with living with symptoms and no one

being able to help. I really appreciate the support, and hope I can

get better.

Many thanks

[Guest guest]

>

> Hi Bee,

> Many thanks for your reply. I wonder if fruit is causing me to be

> worse then, I have been eating a couple of pieces a day, but I find

> this gives me abdmonial pain and diahorrea (spelling?). I am off

to

> the Dr's again today to have a chat, but I am suffering extreme

> anxiety, as my bowel has been terrible since I have had the fruit

this week. I have pale floating stools and I am very anxious about

this symptom.

> All I want to do is find things that make me have a normal bowel

> movement for once!! I am fed up with living with symptoms and no

one

> being able to help. I really appreciate the support, and hope I

can

> get better.

==>Hi . There are no quick fixes my friend, and fruits

definitely feed candida and other bacteria making them grow like

crazy! Eliminate the fruits and other sugars, including all dairy

except butter per my article and you will get better as you

progress. Do not be concerned about your stools in the meantime. It

will take time for your body to stabilize and adjust to the diet and

supplements and it takes time to get well. It is not an overnight

thing. Natural healing has its ups and downs and healing reactions

and symptoms too, which are not disease symptoms. It is not a steady

uphill climb towards health. Read more articles about healing and

you will understand better what your body goes through in order to

heal itself - see our Group's Files and search for the Folders on

Healing and there's one called Candida Symptoms, Help For.

Also ensure you change over your diet gradually per the

article " Curing Candida, How to Get Started " which is in the 2nd

folder in our files.

I do not believe your doctor will be able to help you. He will

simply perscribe drugs which are toxic and poisonous to the body.

Also , follow the recommendations on Improving your Digestion in

the main article " How to Successfully Overcome Candida " . Also see

the Digestion Folder which has help for diarrhea and other digestive

problems. However, in the long run treatments assist the body but

the only way to get healthy is to build up your immune system the way

nature intended.

The best, Bee

[Guest guest]

All seizure medicines have side effects. My 4-year old grandson, who has

partial seizures, is on Kepra. He is severely affected by cerebral palsy.

Every time they have increased his dosage, he seems to become more " floppy, "

and it is harder for him to do things. He still has about 1 seizure a

month. The doctor talked about switching him to another drug that has many

side effects, but my son and daughter-in-law decided not to do it. Has your

daughter only had one seizure? Be cautious in whatever you decide to do.

Helen

[Guest guest]

welcome Stacey-

This is a great and supportive group.

There are several Young adults with JA involved here as well as young adult

get together events and in attending the AJAO - American Juvenile Arth.

Organization conferences.. I'm sure you will learn more soon about hhat. I

see you're in the UK so guess the USA is rather far from here!

Whatever the case, I'm 30 and have JRA, Fibromyalgia, Myofascial pain

Syndrome, and a bunch of other 'grab bag' health issues. I'm on quite a bit

of meds but having insurance issues and not quite getting the health care I

need but thats a whole different story.

That's unfortunate that you can't get out much.. is this due to mobility

issues?? I know that I have problems getting about and use a

powerchair/scooter quite often which allowes me a great deal of freedom.

Anyways, umm, what else can I say about me... I like to write poetry, paint,

draw, swim, and Im pretty addicted to psychology.. particularly behavioral

Medicine.

Well, any who... welcome to the list..... feeel free to email me off list if

you wish FlyfreeIzzie@...

Issadora

On Tue, Mar 25, 2008 at 2:11 AM, stacey.fisk <hrc_tr@...> wrote:

> Hi there,

> I am new to the group today. My name is Stacey and I am almost 21

> years old, I was diagnosed with Chronic Juvenile Rheumatoid Arthritis

> at 18 months old after months of extensive tests and mis-diagnoses. I

> have joined for a number or reasons, I would like to give some advice

> and support that wasn't always readily available when I was little, to

> fellow sufferers or/and their parents and carers.

> I have been one a few different medications, the worst I have to say

> is Methotrixate. However I am now on Enbrel injections of which I do

> myself twice weekly. I have also undergone different therapies and I

> have recently come out of hospital after recieving IV(drip) of

> steroids.

> I am online VERY often as I don't get out and about that much. I would

> love to hear from anyone and everyone no matter how you are related to

> JRA. I would also be grateful of some friends!! =D

> Thanks for your time, I hope you all had a nice easter.

> Stacey x

>

>

>

--

" Life- Like the flutter of wings... feel your hollow wings rushing... " (AFI-

Silver and Cold).

my Flight in life is a metamorphosis of growth and this flutter of wings is

within me awaiting to find a space to find it's flow...

[Guest guest]

Welcome ! Glad to have you here.

, mom to Rob, 18, juvenile ankylosing spondylitis

New to the group

> Hi there,

> I am new to the group today. My name is Stacey and

> I am almost 21

> years old, I was diagnosed with Chronic Juvenile Rheumatoid

> Arthritis

> at 18 months old after months of extensive tests and mis-

> diagnoses. I

> have joined for a number or reasons, I would like to give some

> advice

> and support that wasn't always readily available when I was

> little, to

> fellow sufferers or/and their parents and carers.

> I have been one a few different medications, the

> worst I have to say

> is Methotrixate. However I am now on Enbrel injections of which

> I do

> myself twice weekly. I have also undergone different therapies

> and I

> have recently come out of hospital after recieving IV(drip) of

> steroids.

> I am online VERY often as I don't get out and about that much. I

> would

> love to hear from anyone and everyone no matter how you are

> related to

> JRA. I would also be grateful of some friends!! =D

> Thanks for your time, I hope you all had a nice easter.

> Stacey x

>

>

[Guest guest]

Hello Sandy,

Welcome to the group. I think you will find lots of information and

support while you work your way through what is bound to be a bit of

a slog.

We have a number of members from Canada. and several have recently

had surgery too. I think it's fair to say that they are far enoguh

along in their healing to relate a lot of their experience with their

medical team. I hope they chime in soon.

It is not uncommon for many of us to have gone anumber of years

without to much concern for our back and then suddenly face a major

uptick in pain and/or debility. Thats kind of how it went for me. I

guess I am glad of that on the one hand...on the other had I guess I

felt pretty blind sided at the time too. Anyway, please know that it

is unlikely that whatever you are feeling is going to have to be

dealt with in an emergency fashion. You will have lots of time to

explore your options and see what is what.

I don't know the ins and outs of the Canadian system but, as always,

the first step is talking to your PCP and make sure nothing that

needs immediate attention is going on. My take on it is that it is

pretty futile to have an xray taken unless it will be evaluated by

someone with experience in dealing with us older HR types, so I think

I have read that the thing to do in Canada is get yourself referred

as soon as possible by your PCP since the wait will possibly be in

the 6 month range. Sigh.

If you read from the main site (not via email or digest) use the

search feature to read past posts re cananda system/doctors. I typed

in the word " canada " and got 176 posts...although some of them are

redundant.

Elaine Wilklie had surgery with a Dr at Toronto Western

and Hodgson from Kingston has him as her doctor too. Francine

Greene has her revision with Dr (that you mentioned). We havent

heard from any of these gals in awhile...probably still snowed in!

I am sure that any one of them will answer a private email if you

send them a note. I know they are kind and helpful folks and they

thought well of their doctors.

Please feel free to ask any other questions you might have. We are

just patients like you....but we have been in your shoes!

Take Care, Cam

[Guest guest]

Hi Sandy

As Cam mentioned in her reply to you, there are a few of us Canadians that post here from time to time.

Like you, my surgeon was Dr. Gillespie, in 1972 when I was 15. I've had increasing discomfort over the past ten years (I'm now 51). My curve has progressed and the pain is really starting to interfere with my life. I've been to see Dr. at Toronto Western - it took about six months to get an appt. Since I wanted to get a second opinion, I got another referral to Dr. Ford at Sunnybrook in Toronto - I see him May 28. I understand it can be a long wait for surgery. I'm hoping to keep working for a few more years before revision surgery, if I can. I'm an RN, so long hours and shiftwork are really getting to me.

That's all the info I have re doctors in Toronto. Elaine Wilkinson had her surgery with Dr. Ford, so maybe she will update us on how she is doing - I think it was around six months ago.

Hope this helps. Keep reading on this site and you will learn lots. It has really helped me.

[ ] New to the group

Hi I'm new to this group and I am hoping to find out some solid information before I make any decisions... I had the Harrington Rod procedure done in 1983 by a Dr. Gillespie up here in Toronto Canada...I also wore the Milwaukee brace in my teens which as you know did no good...I am now 49 years old and have had 2 children and have had no problems until now....I wake up and I am so stiff and sore in my lower back...I can't stand straight.now to sleep on my back is sore..I have been experiencing soreness in my groin and in my thighs....and some days I feel sore in my neck and the centre of my back..things are clicking in my back now...this week I have a new symptom...it' s the old side pain that I can remember before I had my scoliosis corrected...Because I have been in good health I have never had my back checked since the surgery..and when I 1st had some pain I just thought I had

shoveled too much snow but it hasn't gone away.....the only thing I have is a before and after x-ray that my doctor gave me as he left his practice here to practice in Buffalo NY....I had a 52 degree curve before going in and have no idea what degree it straightened out to when completed... .Health care up here is a wait...is there anyone from Toronto on this forum that can give me a good Ortho Doctor....I have heard of one a Dana from the Trillium.... but I don't know much about him...to get into his office will be a 5 month wait....The 1st thing I would like to do is get an x-ray done....should I be asking for the full body x-ray or is it better if they do it in sections....Any help would be appreciated. ..After reading many posts I'm am quite worried...Thanking you in advance for your time....Sandy

Looking for the perfect gift? Give the gift of Flickr!

[Guest guest]

First of all, big hugs to you! You have been through so much and to

have two children with this disease is so terribly awful. My

daughter has had it for 2 years and has been on the MTX for a year

now. Naprosyn actually made her throw up constantly (even taken with

lots of food) and so stopped that med. and went to the MTX. It's

been a GOdsend for her. Medicated remission for 10 mos. now.

I don't have any advice for you about Kineret but I know there are

many moms here dealing with those injections.

Welcome and hope you get this ugly disease under control soon for

your girls. I think there are lots of others that echo your

frustration over this country not have enough Ped Rhuemys. Wish the

world would wake up a bit on this obviously growing disease (now out

numbers Juvenile Diabetes).

-Hadley (Isabelle, 4 yrs. Pauci)

>

> HI,

> MY NAME IS NICKI AND I'M THE MOTHER OF TWO LITTLE GIRLS. MY OLDEST

> DAUGHTER WHO IS NOW 6 WAS DIAGNOSED WITH POLY JRA AND UVEITIS IN

2005

> WHEN SHE WAS 3. FOR THE FIRST FLARE UP WHICH SHE WAS PUT ON STEROID

> DROPS FOR HER EYES AND METHOTREXATE FOR HER KNEE AND HAND. AFTER

> ABOUT SIX MONTHS SHE WAS TAKEN OFF THE MEDS AND WAS OK EXCEPT FOR

THE

> MINOR FLARE THAT MOTRIN TOOK CARE OF. FOR THE LAST MONTH SHE HAS

BEEN

> IN THE MIDST OF THE WORST FLARE SHE HAS EVER HAD. WE HAD TO FIND A

> NEW DOCTOR BECAUSE WE MOVED. SHE HAD TO HAVE HER KNEE DRAINED AND

WAS

> PUT BACK ON THE METHOTREXATE AS WELL AS NAPROSIN. WELL AFTER A LATE

> NIGHT RUN TO THE ER WE FOUND OUT THE SHE IS ALLERGIC TO THE

NAPROSIN.

> WHILE ALL OF THIS IS HAPPENING WITH GABBY (MY 6 YEAR OLD) DESSIE

(MY

> 4 YEAR OLD) WAS HAVING TROUBLE OUT OF HER ANKLE. MY HUSBAND AND I

> WERE PRAYING THAT IT WASN'T JRA BUT AFTER 3 MONTHS OF MULTIPLE

> DOCTORS AND TESTS SHE WAS DIAGNOSED WITH JRA. SHE WAS PUT ON A

> NAPROSIN REGIMIN AND SO FAR IS NOT RESPONDING.

> THIS WOULD BE SOME WHAT EASIER BUT I HAVE TO DRIVE 6 HOURS TO

> CHARLOTTE, NC TO BE ABLE TO FIND A DOCTOR THAT WOULD SEE MY GIRLS.

SO

> WITH THIS FLARE UP THEY MISSED A MONTH OF SCHOOL AND ONLY GOT TO

SEE

> THEIR DAD TWO WEEKENDS BECAUSE HE HAD TO KEEP WORKING. LUCKLIY MY

> FAMILY LIVES IN CHARLOTTE SO I WASN'T TOTALLY ALONE AND RACKING UP

> HOTEL BILLS.

> MY HUSBAND AND I ARE JUST FRUSTRATED AND AT OUR WITTS END ABOUT

THE

> LACK OF DOCTORS AND INFORMATION OUT ABOUT JRA.

> DESSIE IS PROBABLY GOING TO START ENBRAL SHOTS IN A COUPLE OF

WEEKS.

> DOES ANYONE ELSE USE THIS DRUG AND IF SO WHAT ARE THE SIDE EFFECTS?

> AND DOES ANYONE ELSE HAVE MULTIPLE CHILDREN WHO HAVE JRA? AND HOW

DO

> YOU DEAL WITH IT?

>

> THANKS FOR THE SUPPORT

> NICKI, GABBY AND DESSIE'S MOMMY

>

[Guest guest]

thank you so much. right now my husband and i need all the hugs we

can get. i'm glad to hear that your isabelle is in remission.

i recieved really good news today. my pcp had forwarded my girls

records to duke medical center. i found out today that both kids have

been accepted to the ped. rumy divison and they have an appointment

later this month. my pcp really wanted us to go there because having

two kids in the same family having jra is a really rare thing. i just

hope that they can help us get things under control.

nicki

> >

> > HI,

> > MY NAME IS NICKI AND I'M THE MOTHER OF TWO LITTLE GIRLS. MY

OLDEST

> > DAUGHTER WHO IS NOW 6 WAS DIAGNOSED WITH POLY JRA AND UVEITIS IN

> 2005

> > WHEN SHE WAS 3. FOR THE FIRST FLARE UP WHICH SHE WAS PUT ON

STEROID

> > DROPS FOR HER EYES AND METHOTREXATE FOR HER KNEE AND HAND. AFTER

> > ABOUT SIX MONTHS SHE WAS TAKEN OFF THE MEDS AND WAS OK EXCEPT FOR

> THE

> > MINOR FLARE THAT MOTRIN TOOK CARE OF. FOR THE LAST MONTH SHE HAS

> BEEN

> > IN THE MIDST OF THE WORST FLARE SHE HAS EVER HAD. WE HAD TO FIND

A

> > NEW DOCTOR BECAUSE WE MOVED. SHE HAD TO HAVE HER KNEE DRAINED AND

> WAS

> > PUT BACK ON THE METHOTREXATE AS WELL AS NAPROSIN. WELL AFTER A

LATE

> > NIGHT RUN TO THE ER WE FOUND OUT THE SHE IS ALLERGIC TO THE

> NAPROSIN.

> > WHILE ALL OF THIS IS HAPPENING WITH GABBY (MY 6 YEAR OLD) DESSIE

> (MY

> > 4 YEAR OLD) WAS HAVING TROUBLE OUT OF HER ANKLE. MY HUSBAND AND I

> > WERE PRAYING THAT IT WASN'T JRA BUT AFTER 3 MONTHS OF MULTIPLE

> > DOCTORS AND TESTS SHE WAS DIAGNOSED WITH JRA. SHE WAS PUT ON A

> > NAPROSIN REGIMIN AND SO FAR IS NOT RESPONDING.

> > THIS WOULD BE SOME WHAT EASIER BUT I HAVE TO DRIVE 6 HOURS TO

> > CHARLOTTE, NC TO BE ABLE TO FIND A DOCTOR THAT WOULD SEE MY

GIRLS.

> SO

> > WITH THIS FLARE UP THEY MISSED A MONTH OF SCHOOL AND ONLY GOT TO

> SEE

> > THEIR DAD TWO WEEKENDS BECAUSE HE HAD TO KEEP WORKING. LUCKLIY MY

> > FAMILY LIVES IN CHARLOTTE SO I WASN'T TOTALLY ALONE AND RACKING

UP

> > HOTEL BILLS.

> > MY HUSBAND AND I ARE JUST FRUSTRATED AND AT OUR WITTS END ABOUT

> THE

> > LACK OF DOCTORS AND INFORMATION OUT ABOUT JRA.

> > DESSIE IS PROBABLY GOING TO START ENBRAL SHOTS IN A COUPLE OF

> WEEKS.

> > DOES ANYONE ELSE USE THIS DRUG AND IF SO WHAT ARE THE SIDE

EFFECTS?

> > AND DOES ANYONE ELSE HAVE MULTIPLE CHILDREN WHO HAVE JRA? AND

HOW

> DO

> > YOU DEAL WITH IT?

> >

> > THANKS FOR THE SUPPORT

> > NICKI, GABBY AND DESSIE'S MOMMY

> >

>

[Guest guest]

Hello- Hopefully they can get things under control soon. I have met one family where the husband had JRA and they have 3 boys.... two of the three are twins... all 3 have JRA. I met them at an Juvenile Arth. Conference but they were also in an issue of Arthritis Today magazine. I wonder if the issue is online.... Your daughter's knee seems to be a major problem but she is Poly? does she have more than 4 joints involved?

I'm sure it's all overwhelming now but getting treatment with this new rheumy will probably help a lot. Issadora

On Fri, May 2, 2008 at 3:27 PM, nicolestiltner <nicolestiltner@...> wrote:

thank you so much. right now my husband and i need all the hugs we can get. i'm glad to hear that your isabelle is in remission. i recieved really good news today. my pcp had forwarded my girls records to duke medical center. i found out today that both kids have

been accepted to the ped. rumy divison and they have an appointment later this month. my pcp really wanted us to go there because having two kids in the same family having jra is a really rare thing. i just hope that they can help us get things under control.

nicki> >> > HI,> > MY NAME IS NICKI AND I'M THE MOTHER OF TWO LITTLE GIRLS. MY OLDEST > > DAUGHTER WHO IS NOW 6 WAS DIAGNOSED WITH POLY JRA AND UVEITIS IN

> 2005 > > WHEN SHE WAS 3. FOR THE FIRST FLARE UP WHICH SHE WAS PUT ON STEROID > > DROPS FOR HER EYES AND METHOTREXATE FOR HER KNEE AND HAND. AFTER > > ABOUT SIX MONTHS SHE WAS TAKEN OFF THE MEDS AND WAS OK EXCEPT FOR

> THE > > MINOR FLARE THAT MOTRIN TOOK CARE OF. FOR THE LAST MONTH SHE HAS > BEEN > > IN THE MIDST OF THE WORST FLARE SHE HAS EVER HAD. WE HAD TO FIND A > > NEW DOCTOR BECAUSE WE MOVED. SHE HAD TO HAVE HER KNEE DRAINED AND

> WAS > > PUT BACK ON THE METHOTREXATE AS WELL AS NAPROSIN. WELL AFTER A LATE > > NIGHT RUN TO THE ER WE FOUND OUT THE SHE IS ALLERGIC TO THE > NAPROSIN.> > WHILE ALL OF THIS IS HAPPENING WITH GABBY (MY 6 YEAR OLD) DESSIE

> (MY > > 4 YEAR OLD) WAS HAVING TROUBLE OUT OF HER ANKLE. MY HUSBAND AND I > > WERE PRAYING THAT IT WASN'T JRA BUT AFTER 3 MONTHS OF MULTIPLE > > DOCTORS AND TESTS SHE WAS DIAGNOSED WITH JRA. SHE WAS PUT ON A

> > NAPROSIN REGIMIN AND SO FAR IS NOT RESPONDING.> > THIS WOULD BE SOME WHAT EASIER BUT I HAVE TO DRIVE 6 HOURS TO > > CHARLOTTE, NC TO BE ABLE TO FIND A DOCTOR THAT WOULD SEE MY GIRLS.

> SO > > WITH THIS FLARE UP THEY MISSED A MONTH OF SCHOOL AND ONLY GOT TO > SEE > > THEIR DAD TWO WEEKENDS BECAUSE HE HAD TO KEEP WORKING. LUCKLIY MY > > FAMILY LIVES IN CHARLOTTE SO I WASN'T TOTALLY ALONE AND RACKING

UP > > HOTEL BILLS.> > MY HUSBAND AND I ARE JUST FRUSTRATED AND AT OUR WITTS END ABOUT > THE > > LACK OF DOCTORS AND INFORMATION OUT ABOUT JRA. > > DESSIE IS PROBABLY GOING TO START ENBRAL SHOTS IN A COUPLE OF

> WEEKS. > > DOES ANYONE ELSE USE THIS DRUG AND IF SO WHAT ARE THE SIDE EFFECTS?> > AND DOES ANYONE ELSE HAVE MULTIPLE CHILDREN WHO HAVE JRA? AND HOW > DO > > YOU DEAL WITH IT?

> > > > THANKS FOR THE SUPPORT> > NICKI, GABBY AND DESSIE'S MOMMY> >>

-- " Life- Like the flutter of wings... feel your hollow wings rushing... " (AFI- Silver and Cold).

my Flight in life is a metamorphosis of growth and this flutter of wings is within me awaiting to find a space to find it's flow...

[Guest guest]

Hi Nicki and and welcome to the group. Here you will find the most wonderful group of folks. Most have kids with JA and some, like myself, are JA vets. I am a 38 year vet and like many here are glad you found us even though we always hate hearing of another child who has met the monster we call JA. Our hearts go out to you knowing you not only have one but two precious babies who deal with this but there is alot of knowledge and comfort found here. I do know of a few families who more than one child with JA and their is actually a sibling study based at Cincinnati Childrens. Donna**************Wondering what's for Dinner Tonight? Get new twists on family favorites at AOL Food. (http://food.aol.com/dinner-tonight?NCID=aolfod00030000000001)

[Guest guest]

Hi Nikki, I just wanted to say hello, and welcome. I joined the group

a few months back,and it has been the best thing for me and my family.

My daughter is 21 months, and has Poly JRA. I can't imagine how

hard it must be for you and your family with two little ones with this

stupid disease. It's crazy, but I have actually put off having more

children, in fear that another child will have JRA. I know it's rare,

but my family and I are convinced that my daughter was born with

it. She had so many of the symptoms since birth, and around her 1st

B-day, it got real bad. Such a scary thing for you all.....

Best wishes to all of you!!!!

, " nicolestiltner " <nicolestiltner@...> wrote:

>

> HI,

> MY NAME IS NICKI AND I'M THE MOTHER OF TWO LITTLE GIRLS. MY OLDEST

> DAUGHTER WHO IS NOW 6 WAS DIAGNOSED WITH POLY JRA AND UVEITIS IN 2005

> WHEN SHE WAS 3. FOR THE FIRST FLARE UP WHICH SHE WAS PUT ON STEROID

> DROPS FOR HER EYES AND METHOTREXATE FOR HER KNEE AND HAND. AFTER

> ABOUT SIX MONTHS SHE WAS TAKEN OFF THE MEDS AND WAS OK EXCEPT FOR THE

> MINOR FLARE THAT MOTRIN TOOK CARE OF. FOR THE LAST MONTH SHE HAS BEEN

> IN THE MIDST OF THE WORST FLARE SHE HAS EVER HAD. WE HAD TO FIND A

> NEW DOCTOR BECAUSE WE MOVED. SHE HAD TO HAVE HER KNEE DRAINED AND WAS

> PUT BACK ON THE METHOTREXATE AS WELL AS NAPROSIN. WELL AFTER A LATE

> NIGHT RUN TO THE ER WE FOUND OUT THE SHE IS ALLERGIC TO THE NAPROSIN.

> WHILE ALL OF THIS IS HAPPENING WITH GABBY (MY 6 YEAR OLD) DESSIE (MY

> 4 YEAR OLD) WAS HAVING TROUBLE OUT OF HER ANKLE. MY HUSBAND AND I

> WERE PRAYING THAT IT WASN'T JRA BUT AFTER 3 MONTHS OF MULTIPLE

> DOCTORS AND TESTS SHE WAS DIAGNOSED WITH JRA. SHE WAS PUT ON A

> NAPROSIN REGIMIN AND SO FAR IS NOT RESPONDING.

> THIS WOULD BE SOME WHAT EASIER BUT I HAVE TO DRIVE 6 HOURS TO

> CHARLOTTE, NC TO BE ABLE TO FIND A DOCTOR THAT WOULD SEE MY GIRLS. SO

> WITH THIS FLARE UP THEY MISSED A MONTH OF SCHOOL AND ONLY GOT TO SEE

> THEIR DAD TWO WEEKENDS BECAUSE HE HAD TO KEEP WORKING. LUCKLIY MY

> FAMILY LIVES IN CHARLOTTE SO I WASN'T TOTALLY ALONE AND RACKING UP

> HOTEL BILLS.

> MY HUSBAND AND I ARE JUST FRUSTRATED AND AT OUR WITTS END ABOUT THE

> LACK OF DOCTORS AND INFORMATION OUT ABOUT JRA.

> DESSIE IS PROBABLY GOING TO START ENBRAL SHOTS IN A COUPLE OF WEEKS.

> DOES ANYONE ELSE USE THIS DRUG AND IF SO WHAT ARE THE SIDE EFFECTS?

> AND DOES ANYONE ELSE HAVE MULTIPLE CHILDREN WHO HAVE JRA? AND HOW DO

> YOU DEAL WITH IT?

>

> THANKS FOR THE SUPPORT

> NICKI, GABBY AND DESSIE'S MOMMY

>

[Guest guest]

That IS GREAT news!!! What a fantastic doctor you have to make the

necessary calls to get the ball rolling with Duke. Your girls will

be in good hands there. And yes, I have heard that there are only

about 300 pairs of siblings with JRA so it is very rare. Keep us

posted on your visit, so happy for you to have your prayers answered

in terms of finding a pediatric rhuemy.

-Hadley

> > >

> > > HI,

> > > MY NAME IS NICKI AND I'M THE MOTHER OF TWO LITTLE GIRLS. MY

> OLDEST

> > > DAUGHTER WHO IS NOW 6 WAS DIAGNOSED WITH POLY JRA AND UVEITIS

IN

> > 2005

> > > WHEN SHE WAS 3. FOR THE FIRST FLARE UP WHICH SHE WAS PUT ON

> STEROID

> > > DROPS FOR HER EYES AND METHOTREXATE FOR HER KNEE AND HAND.

AFTER

> > > ABOUT SIX MONTHS SHE WAS TAKEN OFF THE MEDS AND WAS OK EXCEPT

FOR

> > THE

> > > MINOR FLARE THAT MOTRIN TOOK CARE OF. FOR THE LAST MONTH SHE

HAS

> > BEEN

> > > IN THE MIDST OF THE WORST FLARE SHE HAS EVER HAD. WE HAD TO

FIND

> A

> > > NEW DOCTOR BECAUSE WE MOVED. SHE HAD TO HAVE HER KNEE DRAINED

AND

> > WAS

> > > PUT BACK ON THE METHOTREXATE AS WELL AS NAPROSIN. WELL AFTER A

> LATE

> > > NIGHT RUN TO THE ER WE FOUND OUT THE SHE IS ALLERGIC TO THE

> > NAPROSIN.

> > > WHILE ALL OF THIS IS HAPPENING WITH GABBY (MY 6 YEAR OLD)

DESSIE

> > (MY

> > > 4 YEAR OLD) WAS HAVING TROUBLE OUT OF HER ANKLE. MY HUSBAND AND

I

> > > WERE PRAYING THAT IT WASN'T JRA BUT AFTER 3 MONTHS OF MULTIPLE

> > > DOCTORS AND TESTS SHE WAS DIAGNOSED WITH JRA. SHE WAS PUT ON A

> > > NAPROSIN REGIMIN AND SO FAR IS NOT RESPONDING.

> > > THIS WOULD BE SOME WHAT EASIER BUT I HAVE TO DRIVE 6 HOURS TO

> > > CHARLOTTE, NC TO BE ABLE TO FIND A DOCTOR THAT WOULD SEE MY

> GIRLS.

> > SO

> > > WITH THIS FLARE UP THEY MISSED A MONTH OF SCHOOL AND ONLY GOT

TO

> > SEE

> > > THEIR DAD TWO WEEKENDS BECAUSE HE HAD TO KEEP WORKING. LUCKLIY

MY

> > > FAMILY LIVES IN CHARLOTTE SO I WASN'T TOTALLY ALONE AND RACKING

> UP

> > > HOTEL BILLS.

> > > MY HUSBAND AND I ARE JUST FRUSTRATED AND AT OUR WITTS END

ABOUT

> > THE

> > > LACK OF DOCTORS AND INFORMATION OUT ABOUT JRA.

> > > DESSIE IS PROBABLY GOING TO START ENBRAL SHOTS IN A COUPLE OF

> > WEEKS.

> > > DOES ANYONE ELSE USE THIS DRUG AND IF SO WHAT ARE THE SIDE

> EFFECTS?

> > > AND DOES ANYONE ELSE HAVE MULTIPLE CHILDREN WHO HAVE JRA? AND

> HOW

> > DO

> > > YOU DEAL WITH IT?

> > >

> > > THANKS FOR THE SUPPORT

> > > NICKI, GABBY AND DESSIE'S MOMMY

> > >

> >

>

[Guest guest]

Hi, Nicki and welcome to the group. My son’s

first rheumy is now at Duke and she was really great in my opinion. She

diagnosed my son and treated him quite well when she was here in Chicago. I think you will

be in good hands there and I hope your daughters’ jra is under control

soon.

You have found a very supportive group

here with lots of knowledge. Please post any questions you may have, someone

will probably have an answer.

Hugs, Michele ( 20, spondy)

From: [mailto: ] On Behalf Of nicolestiltner

Sent: Friday, May 02, 2008 5:28 PM

Subject: Re: NEW TO THE

GROUP

thank you so much. right now my husband and i need all

the hugs we

can get. i'm glad to hear that your isabelle is in remission.

i recieved really good news today. my pcp had forwarded my girls

records to duke medical center. i found out today that both kids have

been accepted to the ped. rumy divison and they have an appointment

later this month. my pcp really wanted us to go there because having

two kids in the same family having jra is a really rare thing. i just

hope that they can help us get things under control.

nicki

> >

> > HI,

> > MY NAME IS NICKI AND I'M THE MOTHER OF TWO LITTLE GIRLS. MY

OLDEST

> > DAUGHTER WHO IS NOW 6 WAS DIAGNOSED WITH POLY JRA AND UVEITIS IN

> 2005

> > WHEN SHE WAS 3. FOR THE FIRST FLARE UP WHICH SHE WAS PUT ON

STEROID

> > DROPS FOR HER EYES AND METHOTREXATE FOR HER KNEE AND HAND. AFTER

> > ABOUT SIX MONTHS SHE WAS TAKEN OFF THE MEDS AND WAS OK EXCEPT FOR

> THE

> > MINOR FLARE THAT MOTRIN TOOK CARE OF. FOR THE LAST MONTH SHE HAS

> BEEN

> > IN THE MIDST OF THE WORST FLARE SHE HAS EVER HAD. WE HAD TO FIND

A

> > NEW DOCTOR BECAUSE WE MOVED. SHE HAD TO HAVE HER KNEE DRAINED AND

> WAS

> > PUT BACK ON THE METHOTREXATE AS WELL AS NAPROSIN. WELL AFTER A

LATE

> > NIGHT RUN TO THE ER WE FOUND OUT THE SHE IS ALLERGIC TO THE

> NAPROSIN.

> > WHILE ALL OF THIS IS HAPPENING WITH GABBY (MY 6 YEAR OLD) DESSIE

> (MY

> > 4 YEAR OLD) WAS HAVING TROUBLE OUT OF HER ANKLE. MY HUSBAND AND I

> > WERE PRAYING THAT IT WASN'T JRA BUT AFTER 3 MONTHS OF MULTIPLE

> > DOCTORS AND TESTS SHE WAS DIAGNOSED WITH JRA. SHE WAS PUT ON A

> > NAPROSIN REGIMIN AND SO FAR IS NOT RESPONDING.

> > THIS WOULD BE SOME WHAT EASIER BUT I HAVE TO DRIVE 6 HOURS TO

> > CHARLOTTE, NC TO BE ABLE TO FIND A DOCTOR THAT WOULD

SEE MY

GIRLS.

> SO

> > WITH THIS FLARE UP THEY MISSED A MONTH OF SCHOOL AND ONLY GOT TO

> SEE

> > THEIR DAD TWO WEEKENDS BECAUSE HE HAD TO KEEP WORKING. LUCKLIY MY

> > FAMILY LIVES IN CHARLOTTE

SO I WASN'T TOTALLY ALONE AND RACKING

UP

> > HOTEL BILLS.

> > MY HUSBAND AND I ARE JUST FRUSTRATED AND AT OUR WITTS END ABOUT

> THE

> > LACK OF DOCTORS AND INFORMATION OUT ABOUT JRA.

> > DESSIE IS PROBABLY GOING TO START ENBRAL SHOTS IN A COUPLE OF

> WEEKS.

> > DOES ANYONE ELSE USE THIS DRUG AND IF SO WHAT ARE THE SIDE

EFFECTS?

> > AND DOES ANYONE ELSE HAVE MULTIPLE CHILDREN WHO HAVE JRA? AND

HOW

> DO

> > YOU DEAL WITH IT?

> >

> > THANKS FOR THE SUPPORT

> > NICKI, GABBY AND DESSIE'S MOMMY

> >

>

[Guest guest]

Hi Brown and Welcome or should I say Dr. Brown.

& nbsp;

Doing shots this big every 2 weeks is dam old even in the AACE Guildlines it

states to do shots every 7 to 10 days page 11.

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

& nbsp;

Doing bigger shots converts a lot of it into Estradiol this does in your sex

life your most likey working better just before your next shot. & nbsp; Your

seeing an Endo this to me is not good most are not good Dr.'s for low

testosterone. & nbsp; I and many others have been down this road that leads to

poor treatment and bad heath. & nbsp; I think here we have maybe 3 men that have

posted seeing an Endo that had a good one.

& nbsp;

Please go to Dr. 's site and read TRT : A Recipe for Success and his HCG

update at www.allthingsmale.com he puts this out there free for us and are

Dr.'s. & nbsp; In this you will see the labs and why your need them.

& nbsp;

I am also a mod at his new forum here is a link he treats a lot of Dr.'s and

some post there.

http://www.musclechatroom.com/forum/forumdisplay.php?s= & amp;daysprune= & amp;f=2

& nbsp;

One big problem you will find you might have is your Hypopituitary I am do to a

bad head injury in a auto accident. & nbsp; It only took me 23 yrs to find this

out you can read my story at this link.

http://www.stopthethyroidmadness.com/stories-of-others/phils-story/

& nbsp;

It was Dr. that helped me find this out and he lives in my state and I have

never seen him.

He has a lot of men on TRT that are still able to make babys. & nbsp; It's true

being on TRT will slow down the LH and FSH messages to your testis and they will

slow way down in working and get dam small. & nbsp; Mine were the size of small

grapes after being on TRT for 23 yrs. & nbsp; I with the help of a post by Dr.

got my Dr. to let me add HCG to my T shots I did 500 IU's 3 x's a week and

retested after the 15th. shot. & nbsp; My TT and FT levels doubled at the time my

labs range for TT was 1592 I went from 600 to 1200 so this told me I am not

primary but seconday had an MRI nothing showed up. & nbsp; We then went back and

reread my old labs and found they were screaming I have a pituitary

problem. & nbsp; So now we treat my low Cortisol, Thyroid, Aldosterone, Ferritin

and more. & nbsp; It was after this that I started to feel my best.

& nbsp;

You need to get your levels of Total and Free T up into the upper 1/3 of your

labs range then go by how you feel your best. & nbsp; And you need to keep your

Estradiol " E2 " down between 10 to 30 best at 20 pg/ml some do good even at

40. & nbsp; I you find your high and you might need to go to war with your Dr. to

test this most do. & nbsp; You need to be careful if you take Arimidex to get it

down not to go down to low this will kill your libido and sex life the same as

to high.

& nbsp;

Here is a good link it's the first thing I read about low T and high E's when I

first came here and I feel it's still the best read. & nbsp; It was first put out

by LEF. then they changed it and this is it at this link.

http://www.griffinmedical.com/male_hormone_modulation_therapy.html

& nbsp;

This is a cut & amp; paste of what Dr. told me to tell my Dr. to let me try

HCG.

====================================================

He probably feels that since you suffer primary hypogonadism (I am guessing)

there is no use in adding HCG to your protocol. There are several reasons why

this is not so. First, you have not lost all Leydig cells, so any HCG you take

will stimulate those who still function to produce endogenous testosterone.

This will support testicular size. We should not ignore this aesthetic

consideration.

Next, if he reads my work, he will learn that HPTA-suppressed (as all TRT

patients are to some extent) also suffer decreased pregenenolone levels, which

is the first step after CHOL in all three hormonal pathways which begin with

CHOL. HCG increases pregnenolone production, and therefore restores a more

natural balance of our hormones.

Next, nearly all TRT patients who add in HCG to their regimens report an

increased sense of well-being and also libido. These are genuine quality of life

issues.

Finally, I just instinctively do not want all those LH receptors (including

those we have yet to discover and appreciate) unstimulated.

& nbsp;

Co-Moderator & amp;quot;Don & amp;#39;t believe anything you hear and only half of

what you see. & amp;quot;

Phil

From: Brown & lt;brbrtsn1@... & gt;

Subject: New to the group

Date: Sunday, June 1, 2008, 12:20 PM

Hey guys, I'm new to the group and just wanted to say thanks for the

resource. I'm 33 yo and have idiopathic secondary hypogonadism for

some unknown reason. I've had MRI and many tests done and pituitary

looks normal but LH and FSH are bottomed out. I had originally sought

out a doctor for chronic fatigue, depression and low libido and

difficulty with maintaining erections. I'd get erect during foreplay

but would lose it when it mattered which was very disconcerting for

me. The thing is that I don't know how long this has been going on

because I've been out of relationships for a few years and wouldn't

have even thought to go see a doctor without having the sexual side

effects of low T while being in a relationship. Anyway, I've been on T

injections for 4 months now and definitely noticed an improvement in

all my symptoms. I'm also on a low dose of thyroid medication because

my T4 level was a little low. I think my free Testosterone level was

around 150 and needless to say I felt pretty bad. So far I'm pretty

bummed about having to take testosterone injections for the rest of my

life and have no idea if this will make me infertile or not. I had a

semen analysis back before the injections which was normal but I'm

sure I'd probably need to go on HCG if I ever wanted to have kids. I

can't imagine how I'll broach the subject with a potential bride but

I'll deal with that when it comes. My only problem right now is that

my libido is up and down. When it's up, I can function like a porn

star but when it's down I feel an utter and complete lack of sexual

drive and can't maintain an erection at all. It's so incredibly

frustrating. What's more frustrating is that it doesn't make sense

when I have the symptoms. I would expect the symptoms to come back

when I'm on my low end of the shot cycle but I gave myself a shot last

Thursday (200mg, upper gluteal) and still have a real lack of libido

today (Sunday). However, my last 2 week cycle was great and I had

great libido.

Anyway, sorry to ramble. I realize that I could have much worse

endocrine abnormalities. I'm finishing my last yr of med school and

the whole experience had made me that much more sensitive to patients

I suppose.

I was curious if any of you who are single males had frozen your sperm

when going on HRT? My endo has been pushing me pretty hard to do this

but I have relented due to the cost and I can't really afford it at

this point.

Also, can you guys related to the up and down libido while on HRT?

I've been wondering if perhaps my injection was wrong or something but

I can't seem to think of anything out of the ordinary that I did when

injecting. I think I'll try gluteal injections next week or perhaps

weekly injections since some of you seem to think that's the best way.

Anyway, any advice or feedback would be appreciated. I guess the

biggest thing that depresses me at this point is the thought of having

to give myself injections for the rest of my life and the thought of

not being able to have children or losing a girlfriend some day when I

have to tell her that there might be issues with me having children.

Luckily I've got a very understanding gf at the moment. Ah well, I

guess I can't cry too much over this when Type 1 DBM pt's have to give

injections every day!

Thanks for listening,

Brown.

[Guest guest]

I am 47 and on weekly injections of Testosterone Cypionate. I take

100 mg. I have been on injections for 1.5 years and was on Androgel

for six months prior to starting the injections. Now that I am on

this side of TRT I realize that my symptoms had actually started to

appear many years before.

As my body has adjusted I have less swings in terms of mood, and

energy and I am on the positive side of things most of the time.

Sexually there is still some swing even within the weekly cycle but

it is not all that bad now.

I have found one thing to consistently provide consistency -- good

nutrition and exercise. While I took my health and such things for

granted before TRT I now realize the essential role these two things

have in my life. If I do not eat well then the swings are

exacerbated for sure.

Even at this stage I still bemoan the thought of weekly injections

for life. When I am " down " about this I dig out my journals and

read about how miserable I was before starting TRT. TRT is not a

perfect solution but it is much, MUCH, better than no solution. Hang

in there.

As for the wife issue? Mine is totally supportive. You'll find that

to be the case with anyone who actually loves you. I would check

into the HCG protocol that some use to maintain testicular function.

Keep us posted.

Darrell

>

> Hey guys, I'm new to the group and just wanted to say thanks for the

> resource. I'm 33 yo and have idiopathic secondary hypogonadism for

> some unknown reason. I've had MRI and many tests done and pituitary

> looks normal but LH and FSH are bottomed out. I had originally

sought

> out a doctor for chronic fatigue, depression and low libido and

> difficulty with maintaining erections. I'd get erect during foreplay

> but would lose it when it mattered which was very disconcerting for

> me. The thing is that I don't know how long this has been going on

> because I've been out of relationships for a few years and wouldn't

> have even thought to go see a doctor without having the sexual side

> effects of low T while being in a relationship. Anyway, I've been

on T

> injections for 4 months now and definitely noticed an improvement in

> all my symptoms. I'm also on a low dose of thyroid medication

because

> my T4 level was a little low. I think my free Testosterone level was

> around 150 and needless to say I felt pretty bad. So far I'm pretty

> bummed about having to take testosterone injections for the rest of

my

> life and have no idea if this will make me infertile or not. I had a

> semen analysis back before the injections which was normal but I'm

> sure I'd probably need to go on HCG if I ever wanted to have kids. I

> can't imagine how I'll broach the subject with a potential bride but

> I'll deal with that when it comes. My only problem right now is that

> my libido is up and down. When it's up, I can function like a porn

> star but when it's down I feel an utter and complete lack of sexual

> drive and can't maintain an erection at all. It's so incredibly

> frustrating. What's more frustrating is that it doesn't make sense

> when I have the symptoms. I would expect the symptoms to come back

> when I'm on my low end of the shot cycle but I gave myself a shot

last

> Thursday (200mg, upper gluteal) and still have a real lack of libido

> today (Sunday). However, my last 2 week cycle was great and I had

> great libido.

>

> Anyway, sorry to ramble. I realize that I could have much worse

> endocrine abnormalities. I'm finishing my last yr of med school and

> the whole experience had made me that much more sensitive to

patients

> I suppose.

>

> I was curious if any of you who are single males had frozen your

sperm

> when going on HRT? My endo has been pushing me pretty hard to do

this

> but I have relented due to the cost and I can't really afford it at

> this point.

>

> Also, can you guys related to the up and down libido while on HRT?

> I've been wondering if perhaps my injection was wrong or something

but

> I can't seem to think of anything out of the ordinary that I did

when

> injecting. I think I'll try gluteal injections next week or perhaps

> weekly injections since some of you seem to think that's the best

way.

>

> Anyway, any advice or feedback would be appreciated. I guess the

> biggest thing that depresses me at this point is the thought of

having

> to give myself injections for the rest of my life and the thought of

> not being able to have children or losing a girlfriend some day

when I

> have to tell her that there might be issues with me having children.

> Luckily I've got a very understanding gf at the moment. Ah well, I

> guess I can't cry too much over this when Type 1 DBM pt's have to

give

> injections every day!

>

> Thanks for listening,

> Brown.

>

[Guest guest]

Phil, thanks for the links. That looks very educational and I'm sure

I'll learn a few things. Unfortunately, I don't seem to have an endo

who appears to be very up to date on HRT for pt's like myself. I

wasn't even aware of the need to do E2 baseline levels and I'm fairly

certain he isn't either since he never took one on me. I think I

mentioned aromatase inhibition at the beginning of my therapy and he

shooed the issue away fairly quickly. Ironically enough, he hasn't

done a follow up free Testosterone level on me since I started therapy

4 months ago. Originally, I was doing 300mg/3 week injections in his

office but insisted on giving them myself. The mood swings were bad

enough that I changed to 200mg/2 week injections but I'm fairly

certain I'm going to switch to weekly when my current cycle is over.

Anyway, I look forward to reading the links and thanks for the

welcome. -Brown

>

> From: Brown brbrtsn1@...

> Subject: New to the group

>

> Date: Sunday, June 1, 2008, 12:20 PM

>

>

>

>

>

>

> Hey guys, I'm new to the group and just wanted to say thanks for the

> resource. I'm 33 yo and have idiopathic secondary hypogonadism for

> some unknown reason. I've had MRI and many tests done and pituitary

> looks normal but LH and FSH are bottomed out. I had originally sought

> out a doctor for chronic fatigue, depression and low libido and

> difficulty with maintaining erections. I'd get erect during foreplay

> but would lose it when it mattered which was very disconcerting for

> me. The thing is that I don't know how long this has been going on

> because I've been out of relationships for a few years and wouldn't

> have even thought to go see a doctor without having the sexual side

> effects of low T while being in a relationship. Anyway, I've been on T

> injections for 4 months now and definitely noticed an improvement in

> all my symptoms. I'm also on a low dose of thyroid medication because

> my T4 level was a little low. I think my free Testosterone level was

> around 150 and needless to say I felt pretty bad. So far I'm pretty

> bummed about having to take testosterone injections for the rest of my

> life and have no idea if this will make me infertile or not. I had a

> semen analysis back before the injections which was normal but I'm

> sure I'd probably need to go on HCG if I ever wanted to have kids. I

> can't imagine how I'll broach the subject with a potential bride but

> I'll deal with that when it comes. My only problem right now is that

> my libido is up and down. When it's up, I can function like a porn

> star but when it's down I feel an utter and complete lack of sexual

> drive and can't maintain an erection at all. It's so incredibly

> frustrating. What's more frustrating is that it doesn't make sense

> when I have the symptoms. I would expect the symptoms to come back

> when I'm on my low end of the shot cycle but I gave myself a shot last

> Thursday (200mg, upper gluteal) and still have a real lack of libido

> today (Sunday). However, my last 2 week cycle was great and I had

> great libido.

>

> Anyway, sorry to ramble. I realize that I could have much worse

> endocrine abnormalities. I'm finishing my last yr of med school and

> the whole experience had made me that much more sensitive to patients

> I suppose.

>

> I was curious if any of you who are single males had frozen your sperm

> when going on HRT? My endo has been pushing me pretty hard to do this

> but I have relented due to the cost and I can't really afford it at

> this point.

>

> Also, can you guys related to the up and down libido while on HRT?

> I've been wondering if perhaps my injection was wrong or something but

> I can't seem to think of anything out of the ordinary that I did when

> injecting. I think I'll try gluteal injections next week or perhaps

> weekly injections since some of you seem to think that's the best way.

>

> Anyway, any advice or feedback would be appreciated. I guess the

> biggest thing that depresses me at this point is the thought of having

> to give myself injections for the rest of my life and the thought of

> not being able to have children or losing a girlfriend some day when I

> have to tell her that there might be issues with me having children.

> Luckily I've got a very understanding gf at the moment. Ah well, I

> guess I can't cry too much over this when Type 1 DBM pt's have to give

> injections every day!

>

> Thanks for listening,

> Brown.

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Hi Kim,

Are you sure that it was allergic reaction? Many times this is a sign of

a herx. When I first started doxy I got so sick for about 3 weeks and

finally it got better. It is sad but you do have to suffer a little while

treating lyme. Google Lyme and herx reaction. You will read about what

this is?

_____

From:

[mailto: ] On Behalf Of krienitz

Sent: Saturday, May 31, 2008 11:30 AM

Subject: [ ] New to the group

Hi,

I am new to the group. I had been told 20 years ago that I probably

had MS. Symptoms on and off, but the last 3-5 years progressively

worse - legs very weak - very difficult to walk right now. Anyway, I

have had a feeling it was Lyme Disease and had a few people (physics,

energy healers, others) tell me that they thought I had Lyme disease.

Tested locally, came back negative, but I knew the history of false

negatives. I sought out a lyme specialist and then sent lab to Igenex

and It came back positive. My doctor immediately put me on

doxicycline and I had an allergic reaction - she wants me to try

minocin next. She also suggested I look into the Buhner protocol. I

ordered the Healy Lyme book, but it is not in yet. I want to get a

jump on ordering supplements - can anyone give me a heads up to the

ones that I should start with and which brands they recommend?

Thanks,

Kim

[Guest guest]

Welcome Kim:

& nbsp;

& nbsp; & nbsp; You NEED to read the book BEFORE starting the protocols. & nbsp;

There are many protocols in the book, depending on what co-infections you may or

may not have with Lyme.

& nbsp;

& nbsp; & nbsp; But the CORE protocol consists of Andrographis, Cat's Claw,

Resveratrol and Sarsaparilla. & nbsp; IT is important that you also do Milk

THistle, and possibly Red Root tincture to help you with die off, so you don't

overtax your liver and the rest of the lymph system. & nbsp; You also need to

start out real slow, and get your body climatized to the herbs. & nbsp; It appears

you have had it a long time, don't expect it to go right away either.

& nbsp;

& nbsp; It will depend on ALL your symptoms also, as to what you take for

them. & nbsp; You can find Brands in the book. & nbsp; I started out with those

brands, but soon went off to other brands. & nbsp; But that is totally up to

you. & nbsp; Hopefully your book will come in the next day or two, so you can get

on your way.

& nbsp;

I had to give up on abx early and have been on ONLY herbs for two and a half

years.

& nbsp;

Hope you get better soon.

& nbsp;

Jim.

###

From: krienitz & lt;krienitz@... & gt;

Subject: [ ] New to the group

Date: Saturday, May 31, 2008, 1:29 PM

Hi,

I am new to the group. I had been told 20 years ago that I probably

had MS. Symptoms on and off, but the last 3-5 years progressively

worse - legs very weak - very difficult to walk right now. Anyway, I

have had a feeling it was Lyme Disease and had a few people (physics,

energy healers, others) tell me that they thought I had Lyme disease.

Tested locally, came back negative, but I knew the history of false

negatives. I sought out a lyme specialist and then sent lab to Igenex

and It came back positive. My doctor immediately put me on

doxicycline and I had an allergic reaction - she wants me to try

minocin next. She also suggested I look into the Buhner protocol. I

ordered the Healy Lyme book, but it is not in yet. I want to get a

jump on ordering supplements - can anyone give me a heads up to the

ones that I should start with and which brands they recommend?

Thanks,

Kim