Thanks

[Guest guest]

To JimmyO@...

When I try to read your e-mail, my screen is black. Is anyone else having

this trouble? Debbie P. (dap8882@...)

[Guest guest]

Dear ,

Please keep in touch and let us know if we can help any further with your son.

Best wishes to him on his first dose of methotrexate.

and the PA family List

[Guest guest]

Hi ,

I was really happy to hear that was able to play baseball last

weekend. I

bet that made him feel terrific. I hope his hands weren't too sore, from

all

that catching. But like you said, it probably did boost his self-esteem,

being

able to do something that he enjoys so much and felt so competent about

before

the jra started. It doesn't help too much when we try to tell them not

to do

something. They have to learn their own limits. And in time, they

usually do.

Thanks for all your kind words about Baby. Yup, we really do get

attached to

the little animals we care for. They bring us so much joy on a daily

basis that

it's no wonder we miss them so much, when they're gone. That was a sad

story

about your dog. I guess these kinds of things do teach the children

lessons

about how valuable and precious life and love is.

About your question, asking why we sometimes get 2 copies of the same

message.... Well, I'm not sure if it happens a lot but in this case,

you'll

definitely get 2 messages. I'm posting to your address and to the

group's

address, so you'll be able to know which address to send group mails to.

I'm

not sure if you realized but your messages only came to me. To send mail

to the

whole group of jra parents, you'll need to address mail to:

onelist (not gmckin@... - my personal address).

That way, everyone will have a chance to read your notes and maybe

respond.

By the way, when do you go to see the specialist in Boston?

Take care,

Georgina

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

Georgina,

Thanks for rsponding. Sometimes I feel very alone out here in hyberspace

and

when I think about the jra list being my only place to " talk " to people

who

understand it's kind of weird, know what I mean? All our relatives and

friends

get impatient and want us to " DO SOMETHING! " about but honestly no

one

wants that more than us and . I don't know why they

they have to be so critical. Right now is doing well, he played

baseball

Sat. night and I cringed when he palyed catcher for the last two

innings, but

he did great and the boost to his self esteem was worth my discomfort. I

thought he would be bedridden the next day, but other than a little bit

sore

hands, he was fine. He's on only 10mg of pred. now but he's still

anemic. His

attitude is better, and we have big hopes for our Boston visit. Thanks

for

being there,

C

> PS Great news about the magazine interview! Tell them you folks are

the

> only sane voices I hear some days! Also, why do we get copies of the

same

> messages in some digests? Are we sending them wrong?

[Guest guest]

Barbara

Thanks for your information on decreasing prednisone. I feel more

informed on the subject now, and will be able to discuss prednisolone

reduction with my doctor more confidently.

Take Care

AIH Melbourne

__________________________________________________

[Guest guest]

Roxanne

Thank you for answering my question. When i reduced my prednisolone

from 30mg it was by 5mg then 2.5mg. I did experience joint pain and URQ

ULQ pain but that only lasted a few weeks. I wounder what dose my

doctor will suggest?

Take Care

AIH Melbourne

__________________________________________________

[Guest guest]

Thanks, I found that site already. Glad to be here!

[Guest guest]

Hi Kiana,

I'm so glad to see that you're back, and look forward to talking to you.

Hugs,

Joan NY

1st Known Deer Tick Bites & Sx: '85

1st (Neg): '89

Cont'd Sx, Neg. s & No LD Dx: '90-'99 1st WB: 4+ Specific Bands:

4/99

Late Neuro-LD Dx: 6/99

[Guest guest]

In a message dated 1/16/0 23:27:17, cdn4inr@... writes:

<< I ended up with

'primadophilus bifidus' in capsule form, has several kinds of

probiotics. Though I read the fine print after I opened it - designed

for middle-aged and senior adults..... real bright. Do you think this

would still be an effective supplement for someone in their mid 20's?>>

I wouldn't worry about it. Sounds like it is probably just a higher potency

or comes in more easily absorbable enteric coating than others might. Or

perhaps milder on the system somehow. It should work fine for you, I would

think.

<<Robin, you mentioned you purchased anti-parasite supplements from

Emerson Ecologists? I am interested in the black

walnut/cloves/wormwood combo that seems to work well for most. Do they

sell this in a kit, or am I responsible for the ratios? >>

It's Emerson Ecologics. Their wormwood is in a combination by Hanna Kroeger

which I THINK has black walnut and cloves in it and that is pre-mixed. They

also sell cloves and black walnut alone.

Robin G.

[Guest guest]

Hi Tracey

Just to let you know - I'm also a single mom, my daughter is also six and it

has taken about three years to diagnose her too! I was also told about the

growing pains thing - and I was even told she might even have psoriasis re

the rash!!!! When I think back - good grief! also has a terrible

appetite - although all of a sudden she's taken a liking to salads, so these

days I don't make big meals for her - usually brown bread, salads, cold

meats and yoghurts. She also started eating fruit over Christmas so I'm

holding thumbs this healthy trend continues! Meggie's Dad is also very

supportive so that is lucky.

Anyway, good luck and keep well...

Ady Ogilvie

aogilvie@...

> Thanks

>

> From: " Tracey D Nettles " <toracey@...>

>

>

> I'm new to this group and wanted to say a special thanks to for

> letting me know how to get my emails out to the group. I'm new to jra and

> computers. I am a single mom and my 6 yo daughter was dx. with jra this

> past may. It took 3 1/2 years to get an accurate dx. I heard everything

> from growing pains to bone cancer. Paxton is on viox, sulfasalazine,

> zantac and a multi-vitamin with fl. She had some really bad flare ups in

> Dec. and Jan. has her with pneumonia in both lower lobes. I really have

> to watch Paxton's actions and attitudes to tell when she is hurting.

> Unless it is severe she never complains. Her rheumatologist says this is

> because she has been in pain for so long she doesn't really know what pain

> free is, so unless it is severe she just keeps on going. We are working

> toward less frequent breakthrough pain. Paxton also has a very poor

> appetite. She will often go days with eating little more than a

> mouthfull. We go back to the RD in Feb. I'm going to ask about the

> headaches, abd. pain. and chest pain. Paxton has had many eppisodes with

> these symptoms and I just attributed them to the fact that she also has

> esophageal reflux dx. Maybe something else? Well, gotta run. Thanks so

> much for all of the info. Look forward to more. I will keep you all and

> your children in my prayers.

>

> Tracey

> _____

>

>

[Guest guest]

Hello, Thanks to everyone who answered my worries yesterday. I really

think it is all of you who are keeping me sane. Your support is important

to my husband also, as he worries about me, and when I can report to him

about some new symptoms or problems, it puts things in perspective for him

to know the facts and he doesn't feel so helpless.

To Marta - thanks for the info on spinal tap procedures. I have had no

treatment at all in the past 22 years. I was told I had fibro and CFS and

to get used to it. Not easy. Yes, I think its a good idea to opt for less

invasive tests first if possible. To Reid - I needed to hear that someone

else has the dreaded belly wobbles (as my daughter Rosie calls them). That

has been one of the worst symptoms in the past 3 years - doubling up with

pain in the supermarket does not look good and feels lousy.

Vicki - you offered research evidence for seronegativity and clinical based

treatment. I would be glad of any material you could send me to give to my

doctor as evidence for lyme treatment. He says he is willing to look at any

material, but stresses that his time is limited. I think if I presented him

with good quality research he would be willing to consider treatment when he

has cleared other tests. Its comforting to know that someone else has these

eye pains and has not gone immediately blind. Thanks to you all. What

would I do without you all.

Take Care

sheila-e@...

[Guest guest]

Hello, Thanks to everyone who answered my worries yesterday. I really

think it is all of you who are keeping me sane. Your support is important

to my husband also, as he worries about me, and when I can report to him

about some new symptoms or problems, it puts things in perspective for him

to know the facts and he doesn't feel so helpless.

To Marta - thanks for the info on spinal tap procedures. I have had no

treatment at all in the past 22 years. I was told I had fibro and CFS and

to get used to it. Not easy. Yes, I think its a good idea to opt for less

invasive tests first if possible. To Reid - I needed to hear that someone

else has the dreaded belly wobbles (as my daughter Rosie calls them). That

has been one of the worst symptoms in the past 3 years - doubling up with

pain in the supermarket does not look good and feels lousy.

Vicki - you offered research evidence for seronegativity and clinical based

treatment. I would be glad of any material you could send me to give to my

doctor as evidence for lyme treatment. He says he is willing to look at any

material, but stresses that his time is limited. I think if I presented him

with good quality research he would be willing to consider treatment when he

has cleared other tests. Its comforting to know that someone else has these

eye pains and has not gone immediately blind. Thanks to you all. What

would I do without you all.

Take Care

sheila-e@...

[Guest guest]

Hi Sheila,

You are very fortunate to have such a loving and supportive mate, tell

him we on this list appreciate him too. I wonder if you could find some

information at Art Doherty's pages regarding seronegativity and LD. Try

looking here:

http://www.geocities.com/HotSprings/Spa/6772/resources.html

Also, since you mention NO TREATMENT at all in 22 years, could you possibly

convince your doctor to put you on antibiotics, maybe doxycycline 300-400 mg

a day, to see if you have the dreaded herx reaction you read about on this

list. That would be a clear indication that you are dealing with a

bacterial cause to your complaints. Give it a try, can't hurt.

Hugs,

Marta

>From: " Sheila Darbyshire "

<sheila-e@...>

>

>Hello, Thanks to everyone who answered my worries yesterday. I really

>think it is all of you who are keeping me sane. Your support is important

>to my husband also, as he worries about me, and when I can report to him

>about some new symptoms or problems, it puts things in perspective for him

>to know the facts and he doesn't feel so helpless.

>

>To Marta - thanks for the info on spinal tap procedures. I have had no

>treatment at all in the past 22 years. I was told I had fibro and CFS and

>to get used to it>

>Vicki - you offered research evidence for seronegativity and clinical based

>treatment. I would be glad of any material you could send me to give to my

>doctor as evidence for lyme treatment. He says he is willing to look at

any

>material, but stresses that his time is limited. I think if I presented

him

>with good quality research he would be willing to consider treatment when

he

>has cleared other tests. Its comforting to know that someone else has

these

>eye pains and has not gone immediately blind. Thanks to you all. What

>would I do without you all.

>Take Care

>sheila-e@...

[Guest guest]

thanks and everyone for the well wishes and hugs. My father came

through the surgery fine, but has a fever that we are a little worried

about. Although the doctor's say that is pretty common. Hopefully he'll do

fine and be home by Monday. Vicki, Md

>Vickie, I am so sorry to hear about your father...you sure have had your

>share lately. I will add him to my prayers. Please let us know how you and

he

>are doing when you get a chance.

>Your Lyme Friend,

> in VA

>

[Guest guest]

> Thanks for all your help on enemas. My wife gave me two enemas one

> with coffee and the other was plain All enemas were two quarts. I

> held the first one for about

> 3 minutes. It was sought of embarrising but what came out of my

body

> was well worth it. again thanks

Here's some usefull info on enemas I collected:

http://www5.electrom.com/AriseShine/enema.htm

[Guest guest]

Aimee,

I'm sure you've probably tried, but another thing that really helps Kelsey is

a warm bath first thing in the mornings. She also goes to PT and we find the

pool therapy is working the best, as the water is about 95 degrees. Hang in

there, hopefully Karl will feel better VERY soon

[Guest guest]

Aimee. Are you sayinng that your sis had Lupus and your child has JRA. That

sounds just like our family. thanks CJ

[Guest guest]

> Aimee,

>

> I'm sure you've probably tried, but another thing that really helps

Kelsey is

> a warm bath first thing in the mornings. She also goes to PT and

we find the

> pool therapy is working the best, as the water is about 95

degrees. Hang in

> there, hopefully Karl will feel better VERY soon

>

>

,

You are right, the morning bath helps. Unfortunately there are five

of us and I sometimes can't get everyone up in time for a leisurely

bath. We do allow for this some days and I have changed my work

schedule so that we can move slower on bad days.

AImee

[Guest guest]

> Aimee. Are you sayinng that your sis had Lupus and your child has

JRA. That

> sounds just like our family. thanks CJ

Yes CJ. My sister died in April from complications of Lupus. She

had had it since childhood but they didn't know what it was. The

predinsone caused lots of problems as did the Lupus. my some

developed systemic JRA the day after her funeral and I began

developing Psoriatic Arth. a week later (thought it was sympathy

pains!)

life stinks sometimes but we go on!!!

Aimee

[Guest guest]

Hi Mark,

Admitting that I had a debilitating illness was the hardest thing I ever had to do. Right up to the day that I lost my job, I denied that it was getting the best of me. Even then, I was convinced that I could still handle the stress of sales. I'd just start my own company and show them!! Ha! Not only couldn't I handle the pace anymore, the stress was killing me! I HAD to start taking care of myself. Just like any major loss, I went through the stages of denial, anger, and finally acceptance. Today, I've learned to pace myself and I find that I can do a lot of what I thought I'd never be able to do again.

Don

Terradon Unlimited

http://www.TerradonUnlimited.com

"People who ask me how we can still have such a positive attitude after all we’ve been through, have it all wrong…We’ve been able to get through all that we have BECAUSE we have a positive attitude". Don Hanson 8/2000

[Guest guest]

In a message dated 10/20/00 12:52:31 PM Eastern Daylight Time,

manalapanoptometric@... writes:

<< Hey, moderators, there are those of us who appreciate your

efforts and I, personally, wish to offer my appreciation.

>>

ME TOO:) I couldn't do your job.

[Guest guest]

Hi nne,

I just wanted to tell you that I think I'm your twin! LOL I get the

same response from my friends. They actually like that I'm not as

fast with my come backs. Geez, I'm not used to this.

Debbie/FL

> I just wanted to thank everyone for the good wishes for the biopsy

on

> Friday. I know it will go fine..just eager to get it over with.

>

> Also, one thing I forgot to include in my posting on mental

> confusion... I never did claim to be sane! I am just confused and

> insane now..lol

> When I am feeling sorry for myself and telling friends how I wish I

> could feel normal again..they kind of snicker...YOU? NORMAL? Since

when?

> Actually some find I am more entertaining to watch these

days...least

> I am good for something!

[Guest guest]

Debbie

Frustrating, isnt it? You just know you have a great comeback there,

if only you could find it..of course it will show up ...just too late

to be of any use. But hey, if I leave them laughing..for whatever

reason... then it is STILL good!!..LOL

nne

> > I just wanted to thank everyone for the good wishes for the biopsy

> on

> > Friday. I know it will go fine..just eager to get it over with.

> >

> > Also, one thing I forgot to include in my posting on mental

> > confusion... I never did claim to be sane! I am just confused and

> > insane now..lol

> > When I am feeling sorry for myself and telling friends how I wish I

> > could feel normal again..they kind of snicker...YOU? NORMAL? Since

> when?

> > Actually some find I am more entertaining to watch these

> days...least

> > I am good for something!

[Guest guest]

Right now I don't have the time or energy to appeal anything. I can't even

afford to talk to a lawyer. Thanks though, I know that I am putting off what

should be done.

Sheryl

--

[Guest guest]

In a message dated 10/17/2001 2:03:19 PM Central Daylight Time,

angelodd13@... writes:

> 2. has anyone had

> these, panic attacks, as a symptom and did they go away with the diet

> and anti-fungals

[Guest guest]

In a message dated 10/17/2001 2:03:19 PM Central Daylight Time,

angelodd13@... writes:

> 2. has anyone had

> these, panic attacks, as a symptom and did they go away with the diet

> and anti-fungals

When my potassium was low, I had panic attacks, but once it was addressed,

the attacks COMPLETELY stopped. You might want to make sure you are getting

enough of it in your supplements. Potassium is needed in order for us to

handle stressful situations, and if I remember correctly, magnesium will help

with this too (I was deficient in both.). Also, if you are having panic

attacks, I wouldn't be surprised if you have adrenal problems with elevated

cortisol levels. When we get stressed, which is what happens during these

attacks, the body's cortisol can rise, and this is very taxing on the adrenal

glands.

annette