Re: Digest Number 29

[Guest guest]

Charlotte:

Go ahead and whine--and you did the right thing in looking for another RD. I

first developed the symptoms of PA about 13 years ago when I was living in

Council Bluffs (IA).

My GP was good, but he was perplexed about diagnosing what I had--so I went to

see a Rheumy at the University of Nebraska Med Center across the river in

Omaha.

This guy came highly recommended--but after three hours of X-rays, tests, and

being shuffled from one exam room to another, he couldn't figure out what I

had.

That made me even more depressed--aside from the fact that I was in constant

pain, not knowing what was causing it made it even worse. I decided to take a

week off of work and go to the Mayo Clinic. The Rheumy suspected PA right

from the start, but he put me through a bunch of tests and exams to rule out

RA and anything else.

Once I knew what it was, I began to feel a bit better--at least I knew what I

had and what to do to deal with it. SInce that time, I've been lucky enough

to have Rheumys who listen to what I have to say--in other words, they treat

the patient, not the disease.

I would advise you to keep trying until you find what you need. If you're

close enough to Mayo or the U of I med center, I'd encourage you to check out

those resources, too--they tend to be on the " cutting edge " of new treatments

and patient care.

Hang in there! Your're gonna make it!

Milwaukee

[Guest guest]

> Message: 13

> Date: Wed, 10 Feb 1999 21:10:10 -0500

> From: M Carroll <LCARROLL@...>

> Subject: prednisone

>

> ***Does anyone know if prednisone will effect the outcome of the AP?

,

The antibiotics need access to the joint space to work - specifically to

the synovium and its appertanant structures. Prednisone can reduce the

inflammation allowing the AP to perform. However, the question to

balance is - at what cost? The side-effects, both near and long-term of

Prednisone range from a compromised immune system and reduced adrenal

sufficiency with dramatic personality changes to bone density reduction,

organ damage and failure, optic injury including cataracts and shortened

life-span. Additionally, Prednisone, even in 5mg amounts, is physically

addictive and you must be carefully " weaned " off of it - normally under

the supervision of a physician.

Some natural alternatives that may work as well or better, depending on

your individual system can include homeopathics like Aurum, herbs like

Curcumin & Bromelain, and herbal combinations like RA SPES. There is (or

at least used to be) information on all of these natural and man-made

anti-inflammatories either on the rheumatic.org web site and/or on

s including, in some cases, possible sources for purchase, pricing

and efficacy comments by members of the list.

HTH

--

Regards,

Geoff Crenshaw, ACC ----------------------

Managing Partner ** No Disclaimers **

Captain Cook's Cruise Center ----------------------

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geoff@...

" Faith is not believing in spite of the evidence;

it is obeying in spite of the consequence. "

[Guest guest]

Trish wrote:

Just got a call from my GYN.My TSH is high which means I have to

much thyroid gland.Wants me to come in for a complete thyroid

uptake. I have gained 5-10 pounds in the past 3 months! How can I be

hyperthyroid. Also 3 months ago He put me on half dose of Estratest

which is estrogen and testoserone. I am afraid to let him adjust my

meds because I may gain more weight. I did mention to my Gyn that I am

gaining and can not lose. He said he will try and figure it out. Any

suggestions????????TrishDistributor for Achievers Herbal Supplements

Dear Trish:

The thyroid runs on a loopback system. The TSH is a hormone produced in

the pituitary gland which tells your body you are low on T4 so that your

thyroid makes more. Then the T4 is converted to T3, the active form of the

thyroid hormone as your body requires it. When your TSH is high, it means

that your thyroid is underproducing and your pituitary is putting out more

and more TSH (thyroid stimulating hormone) trying to jumpstart the thyroid.

It is common to gain weight when your thyroid is low, but it can be a side

effect of the Estratest also. Some people with overactive thyroid also

gain weight, however. Just goes to show you that each individual is unique

and responds uniquely to the influences pressed upon it. I hope your

estratest also contains some progesterone, it's not good to take estrogen

alone.

[Guest guest]

In a message dated 8/5/99 10:30:37 PM Central Daylight Time, orca2@...

writes:

<< The TSH is a hormone produced in

the pituitary gland which tells your body you are low on T4 so that your

thyroid makes more. >>

Pam, you seem so knowledgeable. I printed out your last reply to refer to.

Are you saying that if my TSH is high, then in fact my thyroid is low, thus,

the increase in strength of meds? Don't know why I'm having such a hard time

comprehending this. Just the fuzzy brain, I guess? I can't believe I've

been taking meds for 20 years and have never tried to understand

it........just took the little pills as the dr. ordered.

I will add that I'm one of the lucky ones who hasn't had drastic symptoms to

contend with. Can't blame the slight weight fluctuations on the thyroid

since I can look at my eating and exercise habits and know where that came

from.

Thanks to you all for sharing.

Ann

[Guest guest]

, fro what i understand, they dont like to treat people who are

depressed or bipolar because the combo treatment can make people

depressed. I have had a history of depression for as long as i can

remember, and started getting treated for it in 1995. My dr. said flat

out he would not treat me unless i was stable and on meds. Which i am.

The treatment definately affects my mood.

Melinda,

i used in 1991 with someone who was almost 20 years older than me, and a

drug user for just as long. i was told, junkies dont clean syringes

right. they need to be taken apart, but when they are, they can become

ruined, so they are not truly cleaned properly even when bleach is used.

That is eventually why i just started sharing, well more so because i

didnt care after a while.I was in school studying substance abuse

counceling, how ironic.

Once i found out i called my old druggie friend Jo ann, ( who was in

school with me, and was my junlie partner ) and I told her, and she was

very unaffected. I am almost sure she is who i got it from, and it is

genotype 1a.

i was in a relationship with soemone who new i had it, and we always had

safe sex.

I have heard it can pass sexually, but its usually not. People i just

date, i dont tell unless its becoming serious. If i always practice safe

sex, i feel i am doing my part to not spread it, the best way i can.

Since i have not done IV since 1992, that is pretty much going to help

some people i would of infected, to not get infected.

There are many emotional ups and downs with this disease, as with any

disease.

So just hang in there, and get information from every where and

everyone.

Corey

[Guest guest]

, fro what i understand, they dont like to treat people who are

depressed or bipolar because the combo treatment can make people

depressed. I have had a history of depression for as long as i can

remember, and started getting treated for it in 1995. My dr. said flat

out he would not treat me unless i was stable and on meds. Which i am.

The treatment definately affects my mood.

Melinda,

i used in 1991 with someone who was almost 20 years older than me, and a

drug user for just as long. i was told, junkies dont clean syringes

right. they need to be taken apart, but when they are, they can become

ruined, so they are not truly cleaned properly even when bleach is used.

That is eventually why i just started sharing, well more so because i

didnt care after a while.I was in school studying substance abuse

counceling, how ironic.

Once i found out i called my old druggie friend Jo ann, ( who was in

school with me, and was my junlie partner ) and I told her, and she was

very unaffected. I am almost sure she is who i got it from, and it is

genotype 1a.

i was in a relationship with soemone who new i had it, and we always had

safe sex.

I have heard it can pass sexually, but its usually not. People i just

date, i dont tell unless its becoming serious. If i always practice safe

sex, i feel i am doing my part to not spread it, the best way i can.

Since i have not done IV since 1992, that is pretty much going to help

some people i would of infected, to not get infected.

There are many emotional ups and downs with this disease, as with any

disease.

So just hang in there, and get information from every where and

everyone.

Corey

[Guest guest]

My Hep C may have taken as long as 28 years to go to liver failure. Or

as short s 16 years.

KEEP THE FAITH BABY

-

" ...I dream then ask why not "

[Guest guest]

My Hep C may have taken as long as 28 years to go to liver failure. Or

as short s 16 years.

KEEP THE FAITH BABY

-

" ...I dream then ask why not "

[Guest guest]

:

Heading to Vegas next Saturday with hubby on business trip....well, business

for him, gambling and SLEEPING IN for me........would you like me to give you

the details of where I'm staying??

Would be nice for me to have company while hubby will be at all those boring

sales meetings......I will be staying until Tuesday....hubby leaves

Thursday....that's from Feb. 19 to Feb. 22nd.....let me know, okay?

[Guest guest]

Anyone else getting the digest in a new bolder, darker font??? I'ts

great.....I can see it without my glasses or contacts.....way to go, Joan!

[Guest guest]

Well, folks, has been so good at home the last two weeks, I guess it was

time for another " meltdown " ........he got up intermittantly at 2, 3, 4,

5......finally I told DH, that's it and went to my 10 yr. old's bed and

crawled in with him.....go figure.....same meds, same time, it worked for the

last two weeks......maybe an adjustment?

Still can't decide on the Risperdal....although I filled the prescription

BEFORE DH decided not to go along with it......so, it's on these difficult

nights that I find myself staring at that Risperdal bottle and

wondering..........

Calling the doc on Monday.......something's GOTTA be done.....this dose just

ain't effective no more.....teach says he's focused a little, but not like he

was before....still fidgety and hard to keep still......this is no way to

live!! Says he will learn but much SLOWER than before, because of all the

distractions!!

Time to try new meds??? Yeah, I think so!

[Guest guest]

hi guys

You know, I don't get the " Digest " at all. I get all of y'all's e-mail. How

does one get the digest?

Zach Staten

[Guest guest]

>

> Heading to Vegas next Saturday with hubby on business trip....well,

> business

> for him, gambling and SLEEPING IN for me........would you like me to

> give you

> the details of where I'm staying??

>

>

,

I would love to get in touch. My hubby and I will be out of town Sat and

probably Sun (Homeschooling conference in Phoenix. Good excuse as any!).

Monday and/or Tuesday would be good. Let me know where you are, and maybe

we can get together. Thanks.

S

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[Guest guest]

At 10:38 AM 2/13/00 EST, you wrote:

>From: Ltb3105@...

>

>Anyone else getting the digest in a new bolder, darker font??? I'ts

>great.....I can see it without my glasses or contacts.....way to go, Joan!

Wouldn't it be nice if *I* did that? heh heh.....

Onelist did that.

j

[Guest guest]

I don't understand how this site works yet. New here. I'm Gail, Mom to Seth

and a bunch of others! Hope this goes through so someone can tell me how to

get around in here. Seth has downs, autism and pica. Seems to me from what

I'm reading, this is where we fit in! Tried autism sites and downs sites,

nice, but we don't fit in either. I get these letters everyday, and enjoy

reading them.

[Guest guest]

Hi Gail:

When you send a letter to onelist, everyone signed up for hte

list gets a copy...even you! It's like talking to a group of people instead

of just one person on an email, but you only need to remember one email

address.

I'm glad you found us. We're happy to have you.

Take care,

Joan

[Guest guest]

Gail,

I home school my ds-asd child. is 9 years old (almost 10), Down Syndrome,

Autism Spectrum Disorder, ADHD and Oppositional Defiant Disorder. It's not

always easy, but well worth it. He was in the public school before the autism

diagnosis, so things might be different now, but I don't want to take the

chance. They were telling me he had no concept of math, and he does now.

I'll have to cut this short, though and get started with my day. Just know that

it is possible, and (at least for ) the best approach. We do get speech

from the school system, and the Department of Mental Health sends over an

in-home intensive therapist.

Loriann

Wife to Dewight

Mom to , 9 years, DS-ASD, ADHD, ODD

and , 8 months

[Guest guest]

hi CK,

I am beginning to love this site! Seth just turned 4. We don't have

anywhere near the problems that I am reading about on here. No meds or

anything like that, yet! He has severe autism, downs and Pica(that's what

drives us crazy)! Lots of spinning EVERYTHING and a little bit of biting

himself, but nothing that we find difficult yet. He doesn't talk or point

yet, but he knows sign for more and cup. He will be having heart surgery in

April, and that's kind of scary. Seth is almost always happy and content and

once he goes to sleep, he sleeps for 8-10 hours, or more if he doesn't have

school. He has been in therapy since he was 8 months old. We didn't know he

was autistic until he was 3. Since then we got him in a 6-1-1 class and see

some improvements. I'm just reading everything everyone writes, trying to

get to know everyone. Thanks for the welcome CK, hope things are going well

with your son. Gail

[Guest guest]

,

It's good to be here. Thank you! I feel very lucky that I'm not having

sleeping problems with Seth after reading all these posts! Seth still fills

me with wonder and awe right now because we have only been dealing with the

diagnosis for a year. He absolutely fascinates me. I'm sure when we have

more problems than just the Pica, I will be VENTING here! Seth is the baby

of the family, and all his sisters are so good with him. I would love to

follow a conversation on homeschooling, if anyone is doing that. we

homeschool our girls, but I'm not so sure that is right for Seth yet. So

far, Seth has given us a lot less stress in four years, than the four girls

do in one day!

Thanks again , and our prayers for Matt.

Gail

[Guest guest]

In a message dated 2/14/2000 4:09:44 AM !!!First Boot!!!, SMILINGGAIL@...

writes:

<<

I don't understand how this site works yet. New here. I'm Gail, Mom to

Seth

and a bunch of others! Hope this goes through so someone can tell me how to

get around in here. Seth has downs, autism and pica. Seems to me from what

I'm reading, this is where we fit in! Tried autism sites and downs sites,

nice, but we don't fit in either. I get these letters everyday, and enjoy

reading them. >>

Hi Gail,

It's me---Donna. The one who sent you the note. I see you've figured out

how to subscribe. Glad to see you on this side. Tell us a little more about

yourself and Seth!!

Donna

[Guest guest]

Hi Donna!

Thanks for the directions! I'm still trying to follow all you people but

it's going to be a long time before I can get you all straight! We just

went on line and I am amazed at all the info and support out here. Seth quit

eating when he was 1 and lived on milk for 2 years. When the Pica got bad we

went to Rochester for that, and they said he was autistic. He is just

starting to eat now. We put him back on baby food and started over. Rifton

chair has helped a lot. I found the hardest part of the Autism (so far) to

be the lack of communication. wish he could tell me when he's thirsty or

anything. I also find it sad to think that he wouldn't miss me if I were

gone. As long as he has his routine he's fine. Right now he has a great

teacher in preschool, but I'm still not ready to let go yet. Thanks again for

the help Donna

Gail-Mom to Seth(4) jo(7) (9) (22) and (24)

Grandma to Errick(4) and wife to Guy(my Hero)

[Guest guest]

Hi Gail, and welcome to here. How old is your son? I have an 11-year-old

(just recently, so it's still novel for me to say that); he's my oldest of

three.

When you write to this address, lots of us get your letter, so you can get

responses from a wide range of people.

CK,

Mom to Ian (2/89),

(9/90),

and Rose (6/94)

[Guest guest]

Gail,

Welcome to this list.

I am , my son Matt has DS-ASD and is 9 1/2 years old. We are in the

process of evaluating meds and probably going to change soon. THere will

probably be much discussion here on that!

YOu have found a great place to belong.

S

________________________________________________________________

YOU'RE PAYING TOO MUCH FOR THE INTERNET!

Juno now offers FREE Internet Access!

Try it today - there's no risk! For your FREE software, visit:

http://dl.www.juno.com/get/tagj.

[Guest guest]

In a message dated 2/14/0 12:47:10 PM, stolzfamily@... writes:

<< We homeschool all but

Matt. He is in a Year round school, which I thought I'd like, but the 3

week breaks are killers. >>

,

We did the same here. I homeschooled my older 2 (the last just

graduated---yeah!) and sent my special needs kids to school. I feel bad

sometimes but I needed the break and so did the other kids--they got much

more attention with the younger ones gone and we got to do things that we

wouldn't otherwise be able to do. I am still considering homeschooling my

youngest--time will tell--I'm getting older and shorter on energy and maybe a

little more selfish for time to myself.

Pam

[Guest guest]

,

do you have any problems with school? We are not in a great district so it

scares me. everything is MAINSTREAM here and the regular teachers don't

know how to educate kids with Autism. (regular kids either)

Gail