Judy

[Guest guest]

That's great that your son will have discussions with you and is

willing to try ERP on clothing. Annie got over her shoe thing doing that -

but it was the therapist who suggested and guided her on it. If I had

suggested it, well, forget it!

I realized reading your response that, of course, Annie does have

big ups and downs on the sensory issues where food is concerned. I guess that

one is so big I have it in a different category in my mind from clothing -

anything involving her mouth is a huge problem. Celexa has allowed her to eat

again, but not nearly a normal amount, and although she is no longer losing

weight, she's not gaining any either.

Good luck with the clothes!

[Guest guest]

Kathy

Will look forward to hearing from you.

Judy

[Guest guest]

Hi Judy, I never was on the treatment before so I can not testify to how bad the old treatment was. I am not having a good time with the new treatment......but everyone is different. I wouldn't wait, I would make sure your on the list, the earlier the better, and the success rate is alot better. Lots of Love Terri

Judy Mckee <tmckee@...> wrote:

Terri, I was thinking about a person in early stage might want to wait awhile because from what I’ve heard, treatment isn’t a picnic. I’ve also heard the side effects from Peg not to be as bad as the earlier treatment. I don’t know, I’m just running off from the mouth…..I’m beginning to feel kind of angry that my doctors wasted six months before even getting me on the list for treatment and I’m not sure I’m on the list yet. I figured I’d wait till about Friday and call the doctor and ask questions again…I’m hoping also to beat this but I’m feeling kind of discouraged tonight. …hugs…judy

-----Original Message-----From: shhcovertoperate@... [mailto:shhcovertoperate@...]Sent: Monday, June 10, 2002 11:40 PMHepatitis C Subject: Re: RE: [Hepatitis C/Edajane

Dear Judy......Teri here I'm in the early stages, I have some scarring of my liver. The way I look at it, I'm lucky to be able to start this treatment while I'm reasonably well. Why any one would want to wait till the damage is bad, just to buy time! I want to buy the rest of my life! I'm 50 yrs. old, and I plan on beating this disease. I found out in 98 and started treatment right away, was a non responder the first time. As soon as the peg came out I was there.The side affects this time around are not near as bad, plus went undetectable, and this is great! I have a six yr. old grandson and another grandson on the way to be born close to my birthdaY, Sept. 7th due, mine the 15 th. I plan on being here when they graduate, if I have any ting to say about it.

[Guest guest]

Dear Judy....

At the bottom of this email you will find a link to the Zapper

web site. You have to go there to unsub yourself, we cannot

do it for you. Thanks.

Sue

judynolen@... wrote:

> PLEASE STOP THESE E-MAILS TO THE FOLLOWING:

> judynolen@...

>

>

--

" She was not quite what you would call refined.

She was not quite what you would call unrefined.

She was the kind of person that keeps a parrot. "

-- Mark Twain

Rich and Sue Owens

http://www.geocities.com/Yosemite/Meadows/7457/index3.html

http://www.nothnbut.net/~reo77/aurora.html

[Guest guest]

Honey, you go right ahead. My goodness, it took me 53 years to find out what it was I was born with, that I had to have so many surgeries as a child. That's where I picked up the Hep C, from blood transfusions as a child. It wasn't until that golfer, Casey , won his case in the Supreme Court, that I found out what he had that he needed a golf cart - it was a thing called Klippel-Trenaunay Syndrome, very orphan. I have it, too. Once he had it, internet sites opened up about it. I just got a confirmed diagnosis about it last summer. Hep C is so much more prevalent, we have got to get the word out there any way we can!

I expected to get what you are expecting, I was too old or had it too long - that's not the case, it's the opposite - the earlier you get it in life the less damage, from what I am told. I'm praying for a good outcome for you.

Much love,

Marilyn

RE: Marilyn

Marilyn....May I have permission to copy this part of your letter to another group I'm on? I'm hoping to get the word out and also that they might want to consider being tested for hep c. You wrote my exact feelings...I'm getting pissed that everyone seems to take our diagnosis so lightly and I will have been diagnosed for almost a year before I get to start treatment. Pretty soon they will say I'm too old or mine will have progressed to cirrhosis. They already said I've had it more than 25 years....I'll wait for your reply....hugs...from a sick and frustrated judy

The Pamela thing came out just at the time when I was diagnosed. It seemed the media was all interested in the sex and shared needles thing, it disgusted me! You know, God bless us all, we get through life the best we know how, and some of us have to resort to drugs, whatever. But I truly believe that people who get Hep C get it innocently. No one knew until the last 10 years, and most still don't, that it's been in our blood supply for years, it's infected so many Viet Nam veterans, health care professionals, and even firefighters, for some reason I don't understand. We are the average Americans, just like anyone else, and we deserve equal treatment like anyone else in this country.

So now a lot of people who have it only found out from being disabled in one way or another.

[Guest guest]

>> Now at 27 I am spending my second life learning about Autism.

> What a journey, good and bad.

Hi Judy,

I must agree what a journey you've traveled and now this. I say what

a scare and just to know that Kent cannot control himself. Today as

I was returning home from church at 65 miles once I had driven onto

the highway. I noticed 's reaction as I picked up speed on the

highway and this kept me wondering was it the speed or the fast

movement of the cars or mine? He started stimming and rocking and

started making faces and his giggling. I remember a doctor whom

happened to be a speaker at a workshop had mentioned how their

visual or auditory senses could trigger lots of odd behavior. The

speed of light, the sounds we can not hear, the difficult of

focusing. So it'll increase overstimulation. Does Kent like wearing

headphones? Maybe a radio, CD, or tape player to silence the

background and something like a heavy blanket on his lap to keep him

calm. Just some thoughts. Of course still continue with your plans

on finding someone to install a good sturdy harness. I hope you do

find someone who will help. I see you've mentioned he is under meds

these are other possibilities that may trigger his behavior. I read

some sites which I do not have on hand at this time:

SSRI-Induced obessions and compulsions that motivate violence toward

oneself or others.

Stimulants make anxiety worse. Medications have to be considered

very carefully, depakote & tegretol. Antidepressants makes it worse,

make, more manic and agitated.

>> Kent is on Risperdal, Paxil, Depacote. Since adding the Paxil we

have noticed an increase in these transition behavior getting

worse. I know we must take him off of the Paxil now and try another

route.

** Please do, I've read lots of ugly issues on this drug. Once again

I do not have this site but it something like judges have reduced

the sentences for violent crimes committed under influence of

antidepressants, then it was followed by several links about the

paxil and what it has done to others. One mom from another list

mentioned how her child became manic with one or two episodes of

aggression/destruction in a week with the Paxil. Her child is under

a different med that is having some good results. So please seek

medical advise.

>> I strongly believe in the Risperdal (he has been on it for years),

**So far on this drug and like many here on the list have had some

good info on this on the experiences of their children and many

adults with Aspergers from another list have also had some great

progress. Plus the idea of smaller doses (1/4 the ususal dosage)for

autistics many have agreed on. I also heard Temple Grandin mention

it should be given in smaller doses and not all combined. Many of

the autistic adult have also mention even with meds that would work

for the individual you should change the diet. Ex. eliminating food

additives, soda, juices with dark dyes, caffeine which could also be

the worst culprits. Include supplements example magnesium & daily

value of calcium.

Just trying to share what I've read and see maybe there is something

that would help.

Here is something else to look into which I've gathered from the

Autism Support Group I attend. Ready for science reading.

Leaky Gut:

Normally everyones intestines are permeable. This means, there are

tiny little holes in it (microscopic). The nutrients from our foods

pass through those tiny holes and enter the blood stream. This is

how we receive nutrition.

These tiny little holes are naturally the proper size, so that " goo "

things such as nutrients will fit through them, but " bad " things

such as toxins will not.

Also, it means that the good things, will fit through the holes only

once they are broken down by natural enzyme process in our bodies,

to the smallest unit, which will fit through the holes. therefore

things like gluten molecules for example (gluten is found in wheats,

and other grains, it is the stuff that makes your doughstick

together), will not fit through the tiny holes, but need to be

broken down into smaller units before reaching the blood stream

through these holes. This is the normal dietary process in everyone.

sometimes these tiny little holes become enlarged. This can happen

for a variety of reasons, but it stems from some type of damage to

the gut. Either the damage is resulting from eating things that our

bodies does not agree with, it can happen because of an infection,

excess fungal growth in our bodies (such as candida, which is

naturally found in our guts, but when it has a chance to reproduce

out of control, it can damage our guts, among other things). mercury

toxity destroys gut health, and creates leaky gut, as well as things

such as having the measles virus, or other virus in our guts. So,

these now, larger holes in the gut walls will allow for substances

to pass through that were not meant to be passed through. When this

happens, substances that are toxins (such as environmental toxins in

our waters, foods, excess chemicals, etc.) pass through into our

bloodstreams. Anything that is in your blood stream is going to pass

through your whole body, including your brain. This is why, in some

persons, there can be behavioural, emotional, cognitive reactions to

foods, and other substances that we ingest. That is the basic idea

of what a leaky gut is. Leaky guts are very common in autistics.

>> So, he was either mad at me or again in one of his transition

spins.

** He probably was mad and then it triggered where he had no

control, some experiences are trying to control hyperactivity &

anxiety with certain meds.

>> I got the book about Behavior Strategies that one of you

recommended. It is good book.

** I can't remember if I it had been me but if I did, it was on the

stripping behavior, it was to understand why. Now with the behavior

you've mentioned this would require something else.

>>I am very frustrated because I can't find any solutions to the

> transition problems.

** 27 years, I could see why and thanks for sharing about Kent.

Prayers that you will find the culprit that is triggering this

behavior. Many from the other list wrote " medication given early in

life while a child's brain is still developing in their opinion can

change the chemistry and sometimes make the child even worse as he

becomes an adult " . Even though I wrote this do not give up on any

type of trials or alternatives its what you can do for your child in

need of some help to function at home and school.

Many hugs,

Irma,14,DS/ASD

[Guest guest]

Irma

Thanks for advice. I am having an emergency meeting with doctors and staff

this coming Wednesday. Will keep you posted.

Judy

[Guest guest]

In a message dated 3/3/2003 7:51:35 PM Eastern Standard Time,

ytribe@... writes:

> He is truly worth it when he looks at me and calls me " his

> kitty " .

Hi Judy,

Oh so cute! I bet he is a doll. I hope this man can help. Keep us posted.

Charlyne

Mom to Zeb 10 DS/OCD ?

[Guest guest]

In a message dated 3/3/2003 7:51:35 PM Eastern Standard Time,

ytribe@... writes:

> He is truly worth it when he looks at me and calls me " his

> kitty " .

Hi Judy,

Oh so cute! I bet he is a doll. I hope this man can help. Keep us posted.

Charlyne

Mom to Zeb 10 DS/OCD ?

[Guest guest]

Hi ,

The way I understand it is that I meet 3 of the four major

criteria, which was fever lasting one week or longer (even though it

was a low grade), arthristis joint pain, Lab work off the wall and

from the Minor Criteria list I had negative RA factor and negative

ANA together with sore throat and liver dysfunction. Combine that

with they gave me very possible test, MRI, CAT scan and body scan

that all showed nothing my Rheuy concluded Still's.

Hope that answers your questions. It sounds like you and I have some

of the same symthoms. Truthfully, when I read some of the other posts

I some times wonder if I have still's.

Judy, Collegeville, PA

Do you mind if I asked what they based the Stills diagnosis on?

> I'm curious because I was confused when my rheumatologist said it

was Stills

> although I didn't seem to have the classic symptoms (spiking

fevers, rashes)

>

[Guest guest]

O K you can go but promise not to fall on somebody. Kills the mood by the way.

[Guest guest]

as a matter of fact I did .The one about the pain in the ass is a porno site in disquise. No kidding. Did not offend me of course, but If someone clicked a box on the right to get more "JOKE" they would find a nasty site. The one about orgasm joke is the very worst. I had to censor them of course. This is the worst (most gross) site I have seen without having to subscribe. Way to go Teri.

[Guest guest]

I think you have that all wrong !! I think they would be happy if I fell on them! Shows you what you know. LOL Did yuo get a joke from me?

Guess Who?

Re: Judy

O K you can go but promise not to fall on somebody. Kills the mood by the way.

[Guest guest]

Judy,

I guess you were diagnosed for the same reasons as me. I think we both fall

into this " fuzzy area. " I think after 1 1/2 years of searching for the

" answers " and reading up on Stills, RA, and Lupus, I decided I can't read

anymore books on auto-immune diseases! I just want to feel better!! It is

weird though when someone asks what's wrong. Now I say I have an auto-immune

disease, but it would be so much easier to just have a correct answer!

leslie

[Guest guest]

well, if you wander down this way and want to get together please email me!

leslie

[Guest guest]

Judy,

thank you very kindly friend for taking the time and writing to me. It

means a lot to me. I will keep you posted. You are a good friend.

Love, Sue #2

-- Re: IT CAME THROUGH!!!! YIPEE....YIPEE

Sue#2

\I am so happy for you. Best of luck.

Judy, PA

> Hi My Dear Friends,

>

> well..it finally came through. My Enbrel was approved today and I

will get

> it on Tuesday of next week. > Love, Sue #2

>

>

[Guest guest]

Judy-

I would be MORE THEN HAPPY to talk to your daughter! I actually, was wanting to talk to someone my age, that is if she will talk to me. Don't worry, it's not your fault, and she's actually probably not blaming you. Some times my Mom thinks I'm blaming her too and I'm NOT AT ALL!! It's just VERY hard to know that you have something so uncommon at such a young age. Give her times, and I promise that things will get better. So you can give her my e-mail address. It's adm_chick@.... I also have MSN messenger. Don't worry, thing will get better for both you and your daughter. God Bless!

**----Original Message Follows---- From: "Judy Moyer" Reply-Stillsdisease Stillsdisease Subject: Re: Myers Date: Wed, 18 Feb 2004 19:30:40 -0000 , My name is Judy. I have had stills since July 2002. Your email must have been sent from heaven. I have been a member here for about a year. On Monday this week 2/16 we found out that my daughter also named (18 yrs. old) has R.A. and or J.R.A. She is feeling very alone and can't image having this at such a young age. I was wondering if you would be willing to exchange emails with her. I am hoping that speaking/emailing with someone closer to her own age might help her. She is very despressed and doesn't want to talk to me. I think that maybe she blames me that she has this since I have stills. My email address is moyer@.... If you are interested please email me your address and I will pass it along to my (also a waitress). Thanks so much. Judy, Collegeville, PA Get fast, reliable access with MSN 9 Dial-up. Click here for Special Offer!

[Guest guest]

A little brain fog there. I'll look up the articles and send them. Sorry about that.

-- Liz

Liz, could you send this article through the list?

ARTICLES The Role of the Liver in Normal Digestion Nutritional Concerns in Hepatitis Infection Hepatitis C and Weight Management Food & Drug Interactions Carbohydrates in the Diet Protein in the Diet Fat in the Diet Fat-Soluble Vitamins: A, D, E and K Water-Soluble Vitamins: The B Family and Vitamin C Understanding Mineral Supplements Herbs to Avoid

Thank you….judy

[Guest guest]

Judy - my " unofficial " answer would be that if he is untreated, and does not

now need treatment, he would qualify. If he imminantly needs TX, probably

not. The idea would be to get to it while you are still healthy, and have at

least 6-8 months before requiring TX.

[Guest guest]

Hi Judy - I think they are not quite ready to enroll people for a trial, but

it can't be far off. Keep your husband healthy!! You said he had a node.

That could be not very serious!! Can you give us more detail? His blood counts?

Other symptoms?

[Guest guest]

Thank you for your reply. We are so new to this and don't understand a lot of

the things we read. I don't want to give him false hope, but wasn't sure at

what point I needed to bring this up to his doctor. I am constantly on the

Internet looking for something . . . and reading all the posts from this SLL/CLL

group. You are all so intelligent about this disease and I am not. I

appreciate your answering my question. I'll watch for more information on this.

Thank you. Judy

jb50192@... wrote: Judy - my " unofficial " answer would be that if he is

untreated, and does not

now need treatment, he would qualify. If he imminantly needs TX, probably

not. The idea would be to get to it while you are still healthy, and have at

least 6-8 months before requiring TX.

[Guest guest]

In October my husband had two lumps on his neck. He had one removed for biopsy.

After that he had CT scans, PET scan, and bone marrow testing done. He has SLL

stage IV. He was advised of the wait and watch method. We went to Duke for a

second opinion and we were told the same thing. He has been told he has many

swollen lymph nodes -- some the size of golf balls. The only one he can feel is

the one on his neck. He has no other symptoms. He looks good and feels good.

He was told to stay healthy and walk, walk, walk. We just got a treadmill and

he uses it every day. I cannot tell you what his blood counts are. He just had

an appointment a couple weeks ago with blood work done, but I don't know the

results. They said they would let us know if there was a change. I guess next

visit we should ask for the numbers. He has a CT scan done in April. That's

where we are -- wait and watch. I just keep looking for things that could help

him. Thank you. Judy

jb50192@... wrote: Hi Judy - I think they are not quite ready to enroll

people for a trial, but

it can't be far off. Keep your husband healthy!! You said he had a node.

That could be not very serious!! Can you give us more detail? His blood counts?

Other symptoms?

[Guest guest]

The meds are great at stopping the OCD thoughts from what I understand. My

brother in law suffered horribly with his OCD thoughts and what they did is

first gave him an SSRI but also some mild tranquilizers to calm his thoughts

until the SSRI could work. Althought still a tad bit quirky (but I say that in

a fond way), he is doing wonderfully. he says the thoughts still come once in a

while, but he is now able to push them out. They don't stick like before.

I agree when they say the thoughts are easier to treat. I can just picture

you running to pharmacy after your appointment with a determined face. No, you

will fill this one NOW!!!!!!

jchabot <jchabot@...> wrote:

Adrien,

Thanks to you also for responding and giving me some tips. I wonder if it is

PANDAS.He has had strep twice this year.

I try to tell him about the OCDmonster and he says " That doesn't help me mom.

Please help me. " Maybe I could make up some tickets, but I bet he'd use them up

in 3 minutes. I feel so bad for my poor little boy. Do you know if there are any

meds to stop this?Or is he going to be like this? This is unbearable!

thanks for listening

hugs

Judy

[Guest guest]

Hi Judy,

No, my son has the bad thought OCD and when it is in full blown scale, the

thoughts are constant - all day long - and it seems to come on full blast!

There really is no relief until the anxiety lets up. On the positive side, I

think it is possibly easier to manage. There is so much out there to lessen the

anxiety and then the thoughts seem to get less and less - and you can finally

breathe again!

Hang in there!

jchabot <jchabot@...> wrote:

Dina,

I will have to get that book. With all the research I've been doing lately, I

have not found much on this type of ocd. Everything I have typed in with his

symptoms, schizophrenia has come up. Although the reading I have done on ocd

explains the bad thought type, and that seems to describe him better. I just

wasn't sure if with this ocd if it is constant. Everything this child sees he

turns into a nightmarish scene. I'm a monster going to kill him. His food is

poison. He has a block stuck in his butt. Just unimaginable disgusting thoughts!

And he does it from the second he wakes up till the second he's asleep. Someone

on this site suggested Benadryl last night for sleep. It did work. He slept all

night. Thank God!!!! I'd like to have him sleep all day!

Thanks so much for your support!

hugs

Judy

mom to Brittany-11-NT -going into 6th gr-high honor student

-Brittany's twin-3-29-95--4-7-95

-9-bp,ocd,adhd,odd,pdd-nos,75mg trazadone 75mg zoloft going into reg 5th

gr class-504plan

iel 4-ocd, speech problem-going into kindergarten-speech therapy, no meds

yet

[Guest guest]

> Judy, good luck today. The Imp of the Mind covers more specific

> thoughts and how to conquer them, not ones that are rapidly changing.

> I'm sure it's the same overall therapy concept, but you may not find

> the book helpful. How do you do ERP when the thoughts seem to be

> random? I would be at a loss too. I know OCD thoughts can morph from

> one worry to another, but I have no experience with the constant

> barrage you're talking about. Hopefully someone on the list can help

> and your pdoc can also help. We feel your pain!

>

> Dina

>