Hello I am new here

May 26, 2000

In a message dated 5/26/00 5:56:40 AM Eastern Daylight Time, smott@...

writes:

<< Dear Wayne: Where is your friend located? Don't do the silver stuff -

doesn't work. >>

many people report success with colloidal silver..(I never used it

myself,never needed to)

..go to dejanews.com and search the lyme newsgroup for posts on the

subject...you can get a lot of info on it from people there...Bernadette

May 26, 2000

In a message dated 5/26/00 4:10:43 AM Eastern Daylight Time,

RealWort@... writes:

<< INCLUDING THE PSYCHOLOGICAL SIDE EFFECTS ETC FROM HAVING LYME >>

<A HREF= " http://www.mentalhealthandillness.com/lymeframes.html " >Neuropsychiat

ric Assessment of Lyme Disease</A> here's a link to get you started

BernaDETTE

May 26, 2000

RealWort@... wrote:

>

> I HAVE A FRIEND WITH CHRONIC LYME FOR OVER 7 YEARS WITH COMPLICATIONS OF

> A HEAD INJURY AND FIBROMYALGIA POSSIBLY FROM ENCEPHYLITIS. SHE IS IN

> THE MIDDLE OF THE WORST REBOUND IN HER LIFE. IT IS EFFECTING HER

> MENTALLY ALSO. SHE NEEDS IMMEDIATE HELP. I HAVE BEEN RESEARCHING OZONE

> AND SILVER TREATMENTS BUT AM OPEN TO ANY HELP I CAN GET ON THE SUBJECT

> INCLUDING THE PSYCHOLOGICAL SIDE EFFECTS ETC FROM HAVING LYME SO I CAN

> BE MORE UNDERSTANDING WHEN SPEAKING WITH HER. ANYTHING THAT WILL HELP

> WILL BE APPRECIATED. THANKS IN ADVANCE.

>

> WAYNE

>

Dear Wayne: Where is your friend located? Don't do the silver stuff -

doesn't work. Generally, antibiotics plus an antidepressant should give

her some relief. Lots of psychological problems from depression to Lyme

rage are possible side effects of Lyme.

Lovette

BTW - Don't use all caps - it means you're screaming at us in the

Internet world!

August 29, 2001

Hi

Yes, he just said "He did not do it right." Or if we are in the supper market and something is on the floor he cannot go past it without picking it up. His room is neat. I bet his backpack was the neatest in the whole school last year.

I noticed something's at home. But one thing his teacher said at the end of the year.. "When Zachary is doing his work (Math class) he thinks the problem is wrong and he does it over even though it was correct. His teacher just said he should feel more confident in his work. But I did not mention to the teacher other things that were happening at home. I did not want to embarrass Zach, he was standing with us.

At the psych yesterday he was in tears and could hardly tell her what was going on.

Thanks Any ideas for books would be helpful.

Tammy

August 29, 2001

Hi Tammy and welcome! This is the greatest group! I have a 12 y/o

son with OCD diagnosed one year ago. This group has been the best

support I've found! I know they'll tell you the best books to read

and about the best treatments (I'll let the more experienced tell

you!) The website for the OCD foundation will be a good place to

begin too, if you haven't already looked at it.

My son 's OCD seems to be having to do things until they " feel

right " to keep something " bad from happening to him. " He turns light

switches on/off/on/off....I've noticed him " step funny " sometimes

too. He has a thing about looking at clocks (?) And some of his

is " weird " to me in that when he touches something he can't quit

touching it until it " feels right " so he avoids touching lots of

things or he may not be able to move for a while! And it's changed

over time, things he did in the beginning he doesn't do now, has

started new things, gone back to old things. That's normal from what

I've read.

Has your son given any reason for his behaviors, like he needs

a " just right " feeling or to balance things out, or to keep something

bad from happening, germs, etc.? does not like to talk about

his OCD so I sort of have to get bits and pieces from him. I haven't

tried the meds with him YET; and there's no one close by local for us

to go to that I've found so we've sort of worked on things here and

there since he began.

Well, I know you'll get LOTS of welcomes and info. Again, this group

is great and stays pretty busy with the posting, which I enjoy. You

learn sooooo much and get to know some of the GREATEST and NICEST

people!!

- single mom to (12) w/OCD and dysgraphia; (12-twin)

w/separation anxiety diagnosed by ME; Randall (16) who I call a moody

teenager these days -

> Hello I am new here I am from Northamtpon, Pa. My son 10 (just

turned 10

> August 27) was just diagnosed with OCD on August 28th.(nice

birthday present

> for him NOT ) I know nothing about OCD I am learning and any

help or

> advice I would greatly appreciate. After several weeks the family

Doctor

> found someone to do an evaluation. She started him on zoloft and

gave a

> number for another Doctor that specializes in OCD. The other Doctor

does not

> see children and is not taking new patents. My son Zachary goes

back to the

> other Doctor in three weeks.

>

> The things my son has been doing..

> -turning on and off lights,

> -when he reaches a doorway or area where the floor changes (such as

carpet to

> tile, carpet to different type of carpet) he must step a certain

number of

> times (usually 4 or 6), it looks like he is marching in place.

> - his alarm clock must be lined up with his bed (I try not to move

it when I

> dust)

> -if he picks something up and turns he must turn again the opposite

way

>

> Please anyone else have any advice???

>

> Tammy

August 29, 2001

Hi Tammy,

Welcome to the group and Happy Birthday to your son! I

am curious as to how you found the

group. It has been such a help to me. How long has

your son had his OCD behaviors?

It was helpful for you to list what his issues are.

Ocd can present itself in many forms. Our son who was

dx at age 12, (is now 17) has contamination fears. We

didn't seem to be getting any help from the local

therapists here. I knew there had to be SOMEONE out

there who knew what we were dealing with. My husband

and I bought our computer and got on-line and I found

this group.

One of the ways to help your son and family is to get

educated. If you access the files for the

site there is a lot of

information to read. There are many good books out

there, two of them are by Dr. Tamar Chansky and Dr.

Aureen Pinto-Wagner. They are advisors to this group!

There are many emotions a family goes through, living

with a loved one with OCD. Since your son is still

young, you will be able to help him in his recovery to

understand and treat this disorder.

I am happy to tell you the next conference of the

Obsessive Compulsive Foundation is in Philadelphia!

This would be a good experience for your family to

participate in. I joined the OCF and they send out a

newsletter and have a great WEB site. THey also put on

this conference.

I know you will get some good advice here. I would

read about how to choose a behavior therapist. (in the

files) The most proven treatment for OCD is Cognitive

Behavior Therapy (CBT) with Exposure and Response

Prevention. (ERP) I hope the person you will be seeing

is well trained in this protocol. Is your son finding

any improvement with the medication? Our son is taking

one of the SSRI's called Celexa. It has helped him,

but he has been unwilling to do any CBT. The best way

to help your son is to let him know he is not alone.

It is so easy to get upset about the irrational

behaviors. I know he will soon be getting the tools he

needs to beat this....and your family will too. Sorry

this is so long. >:|)

Welcome Again.

Vivian in WA ST

--- Tmmy1212@... wrote:

> Hello I am new here I am from Northamtpon, Pa. My

> son 10 (just turned 10

> August 27) was just diagnosed with OCD on August

> 28th.(nice birthday present

> for him NOT ) I know nothing about OCD I am

> learning and any help or

> advice I would greatly appreciate. After several

> weeks the family Doctor

> found someone to do an evaluation. She started him

> on zoloft and gave a

> number for another Doctor that specializes in OCD.

> The other Doctor does not

> see children and is not taking new patents. My son

> Zachary goes back to the

> other Doctor in three weeks.

>

> The things my son has been doing..

> -turning on and off lights,

> -when he reaches a doorway or area where the floor

> changes (such as carpet to

> tile, carpet to different type of carpet) he must

> step a certain number of

> times (usually 4 or 6), it looks like he is marching

> in place.

> - his alarm clock must be lined up with his bed (I

> try not to move it when I

> dust)

> -if he picks something up and turns he must turn

> again the opposite way

>

> Please anyone else have any advice???

>

> Tammy

>

__________________________________________________

August 30, 2001

Hi Tammy, Welcome to our list. As you have probably found out this list can be a real lifeline for those of us who are dealing with a child that needs assistance in so many areas of their lives! Learning about OCD can be overwhelming at times, but once you have had the time to do some reading and post on the list, so much will begin to make sense and when situations arise later you will know better what to do. I live in the Southeastern corner of PA. I am not sure where Northampton is. I do know how to find excellent therapists in the Philadelphia region though. The OC Foundation (www.ocfoundation.org) also has a list of therapists, by state that specialize in OCD. It was through them that I finally found a therapist who was skilled in working with children who have OCD. This therapist has been worth her weight in gold and the progress my son has made since he has been in her care has been phenominal. Please try to find some time each day to relax and take care of yourself - I have found that I can be of more help to my kids when I am rested and not feeling too stressed. Taking a bubble bath or just vegging out in front of the Weather Channel before bed help me to feel rested and better in control of myself, which my kids really do need! Well, I've said enough. Again , welcome to our group and I look forward to hearing from you! in Southeastern PA

Tmmy1212@... wrote:

August 30, 2001

HI in Southeastern PA

Yes, it can. there are so many symptoms my head is spinning. It is nice to know that I (we) are not the only ones.

<I live in the Southeastern corner of PA. I am not sure where Northampton is.

>

I am in the Northeast near town Pa or Easton Pa if that helps.

I will look at there site to check for my son. Philadelphia is pretty far but hopefully I will find someone closer.

A bubble bath sound good!

Thanks in Pa

Tammy in Pa

August 30, 2001

Hi Melinda S from Dallas

< One of the behaviors that exhibits is picking up trash. >

That is what Zachary does. My son is neat with his room and backpack or if we go to the store. But the living room AHHH forget it. he has the habit of moving the cushons off the sofa that drives me and my husband nuts. It does not bother Zachary at all.

August 30, 2001

In a message dated 8/30/01 8:48:44 PM Eastern Daylight Time, Tmmy1212@... writes:

But the living room AHHH forget it. he has the habit of moving the cushons off the sofa that drives me and my husband nuts

Hi Tammy!

Strange--- (10, OCD) does this SAME exact thing. He has to move the cushons OFF the sofa and onto the floor for some bizarre reason-- and I have no idea WHY.

Welcome to the group, Tammy! I'm the mom of (20-- my 'typical' kid who has been a JOY to raise), (18, ADHD+mild OCD-- who has been alot of fun, but a rollercoaster of ups and downs) and (10, OCD-- who has boggled my mind more than LIFE itself!!)

Each day is an ADVENTURE!!!

Joni

August 30, 2001

Hi, Tammy and welcome! I am the mom of a 15 yo boy diagnosed

officially 8 months ago, but unofficially by us probably 1 1/2 years

ago. He suffers from hyperresponsibility (a form of scrupulosity)

and compulsive exercising. He also has an eating disorder in that,

although he eats pretty well, he does not eat enough to support his

activity level. One of the behaviors that exhibits is

picking up trash. This is related to his hyperresponsibility and the

need to " take care of business " because no one else will. He also

straightens classrooms (desks, books, etc.) before he leaves. This

sounds a little like what Zachary might be doing. (However,

's bedroom is NOT neat...I guess he doesn't feel particularly

responsible for that!) also takes a long time for

classwork/homework. He wants to make sure those Algebra problems are

exactly right. It takes him a long to read now because he rereads

everything in case he might have missed something (I also think that

because his mind is full of thoughts, he doesn't comprehend like he

once did.) When he answers essay questions, LOOK OUT! He gives more

information than you could ever want. Last year, before we realized

the extent of the situation, his biology teacher praised him...saying

his answers were better than the answer key!

Again...hyperresponsibility.

Anyway, I just wanted to say, " Welcome to the group! " I hope it will

provide you with information, support and some grins along the way.

It has been a lifeline to me.

Melinda S.

Dallas

> Hi

>

> <Has your son given any reason for his behaviors, like he needs

> a " just right " feeling or to balance things out, or to keep

something

> bad from happening, germs, etc.? >

>

> Yes, he just said " He did not do it right. " Or if we are in the

supper market

> and something is on the floor he cannot go past it without picking

it up. His

> room is neat. I bet his backpack was the neatest in the whole

school last

> year.

>

> I noticed something's at home. But one thing his teacher said at

the end of

> the year.. " When Zachary is doing his work (Math class) he thinks

the problem

> is wrong and he does it over even though it was correct. His

teacher just

> said he should feel more confident in his work. But I did not

mention to the

> teacher other things that were happening at home. I did not want to

embarrass

> Zach, he was standing with us.

>

> At the psych yesterday he was in tears and could hardly tell her

what was

> going on.

>

> Thanks Any ideas for books would be helpful.

>

> Tammy

August 31, 2001

Hi Joni

<Strange--- (10, OCD) does this SAME exact thing. He has to move the cushions OFF the sofa and onto the floor for some bizarre reason-- and I have no idea WHY. >

At least were not alone. Don't you just get tired of seeing the cushions on the floor?? And when the door bell is ringing he of course takes his good old time putting them back and reaffixing because he did not due it write. Oh well like you said "Each day is an ADVENTURE!!!"

Thanks Joni

Tammy From PA

March 1, 2004

Hi Rosetta:

My name is and I am mom to, , who also was diagnosed at 3 yrs. old with systemic JRA. What you are going through is "normal"--if there is such a thing.

You have come to the right place to help you through a trying time. Many of us here either have children you have some form of JRA or there are some here who are living with it and they have very productive lives.

Hang in there and keep us posted on your son.

March 1, 2004

Hi Rosetta,

Your story sounds just like mine, almost to a tee. was just a couple months older and had the exact same symptoms.The only thing with us is our ped begged us not to take him to the ER for fear of the tests and he was pretty positive it was systemic JRA.We sought out a Dr. in Nashville and they got us into the rheumy the next day,exactly 21 days from the very first symptom.

Once you have a diagnosis the next step of the journey begins.Finding the right drug or combo of drugs can be quite challenging.

You have come to the right place for help.Ask anything and feel free to vent ALL you want.

Hugs

Becki and 5 systemic

March 1, 2004

HI Rosetta,

Welcome to the group to you and to Dakota. IM sorry you are having to deal with this, but you have found the right place, this group is amazing and helped me out SOOO much.

Please ask any question, you are bound to get an answer, theres soo much knowledge here.

HUgs Helen, mom to (6,systemic)

Hugs..Helen DH Dan DS's (20)(14)(12)Zachary(9)(6)

DD (4)>From: "orwranglerbabe2002" >Reply- > >Subject: hello i am new here >Date: Mon, 01 Mar 2004 07:45:53 -0000 > >hello to everyone > >my son was just diagnosed with systemic jra. he is 2 1/2 yrs old. it >has only been about a month . the rare thing about him is that >Rheumatoligst siad that he never gets them this early. my son started >getting sick on Feb 2 we just that he had the flu or something . his >fever kept getting higher. it was up to 103 and the motrin and >tylnole was not working. on the fouth day of hime being sick i had >came home from work find him just burning up . i decided that it was >time to take him the dr. so i took him to a local urgent care and >they had no clue what was going on they said that they feared that >he had meningitis so they sent us to the e.r and then once there the >dr there told us the he had phemuniua and that his pain was just body >aches from a viral infection and so was his rash. the gave him some >meds and sent him home. so the next day he was no better . i forgot >to mention that he screamed in pain when i picked him up or tried to >move him . well anyway i took him to his dr and the dr thought that >maybe it was the the flu , but insisted that ther was something else >going on and being the dr that he is he said ok i will run some blodd >work to see what is going on . so we get that done . we go back the >next day and the dr says the he is pretty sure that my son has >rematic fever but we will have wait for one more test to come back to >make sure. so we go back the next day and he tells us that it is not >reumatic fever and he is not sure what is going on with my son but he >had a thought that is might be JRA . so he set up a appointment up >with a specialist and send us 180 mile from home to portland,oregon >we get there and the dr wants to do a bone scan. so we get a room and >stay the night. next day they do the test and it show nothing and all >this time his blood work is getting worse and worse . so the dr >decieds that he wants to make sure that there is nothing else going >on with him . my son wouldnt walk he did walk for seven days we >were in the hospital for three days they did every test i think there >is and and they all came back negative .by this time is has been >only two weeks and i am scared out of my mind not know what is wrong >with my some and why he keeps running a high fever has a rash and >wont walk . so finally the dr says that he can say 99% sure that he >has systmic JRA and now he is getting treated. but my head is still >spinning and the have been so many ups and downs in such a short >time . is this normal? well i guess i ahve rambled on enough for >being a new person . > >my name is rosetta >i live in oregon >my son is dakota > >thanks to everyone for listening > >rosetta > Click, drag and drop. My MSN is the simple way to design your homepage.

March 1, 2004

Rosetta, My daughter is 15 and has systemic jra. We live in Portland and have seen both pediatric rheumatologists here. If you have any questions, please email me and I will give you my number. Hang in there. (n,15, systemic)

hello i am new here

hello to everyone my son was just diagnosed with systemic jra. he is 2 1/2 yrs old. it has only been about a month . the rare thing about him is that Rheumatoligst siad that he never gets them this early. my son started getting sick on Feb 2 we just that he had the flu or something . his fever kept getting higher. it was up to 103 and the motrin and tylnole was not working. on the fouth day of hime being sick i had came home from work find him just burning up . i decided that it was time to take him the dr. so i took him to a local urgent care and they had no clue what was going on they said that they feared that he had meningitis so they sent us to the e.r and then once there the dr there told us the he had phemuniua and that his pain was just body aches from a viral infection and so was his rash. the gave him some meds and sent him home. so the next day he was no better . i forgot to mention that he screamed in pain when i picked him up or tried to move him . well anyway i took him to his dr and the dr thought that maybe it was the the flu , but insisted that ther was something else going on and being the dr that he is he said ok i will run some blodd work to see what is going on . so we get that done . we go back the next day and the dr says the he is pretty sure that my son has rematic fever but we will have wait for one more test to come back to make sure. so we go back the next day and he tells us that it is not reumatic fever and he is not sure what is going on with my son but he had a thought that is might be JRA . so he set up a appointment up with a specialist and send us 180 mile from home to portland,oregonwe get there and the dr wants to do a bone scan. so we get a room and stay the night. next day they do the test and it show nothing and all this time his blood work is getting worse and worse . so the dr decieds that he wants to make sure that there is nothing else going on with him . my son wouldnt walk he did walk for seven days we were in the hospital for three days they did every test i think there is and and they all came back negative .by this time is has been only two weeks and i am scared out of my mind not know what is wrong with my some and why he keeps running a high fever has a rash and wont walk . so finally the dr says that he can say 99% sure that he has systmic JRA and now he is getting treated. but my head is still spinning and the have been so many ups and downs in such a short time . is this normal? well i guess i ahve rambled on enough for being a new person .my name is rosetta i live in oregonmy son is dakota thanks to everyone for listeningrosetta

March 1, 2004

Hi Rosetta,

Like many other moms here, your story is EXTREMELY familar! My 8 yr old

(will be 9 this Thursday) son was diagnosed with systemic JRA this past

July, we went through the same situation, and by the time it was all over,

it was actually a relief to have an answer, and to know that it was not

leukemia (my son also had the bone marrow test). I know everyone here can

completely relate to how you are feeling, try and remember to take things

one day at a time. I am happy to say that my son is doing very very well,

he has been off all meds for 3 weeks (methotrexate had to be stopped because

of severe stomach issues) and so far his blood work is still normal and he

is still symptom free. His doctor said it takes about 6 weeks for the mtx to

be fully out of his system, but normally there would be problems starting by

now...so we are holding out hope that things will be ok for him for a while.

Best of luck to you and your son, you will find this list to be very

helpful. By the way, March is JRA awareness month.

Jodi

>From: " orwranglerbabe2002 " <orwranglerbabe2002@...>

>Reply-

>

>Subject: hello i am new here

>Date: Mon, 01 Mar 2004 07:45:53 -0000

>

>hello to everyone

>

>my son was just diagnosed with systemic jra. he is 2 1/2 yrs old. it

>has only been about a month . the rare thing about him is that

>Rheumatoligst siad that he never gets them this early. my son started

>getting sick on Feb 2 we just that he had the flu or something . his

>fever kept getting higher. it was up to 103 and the motrin and

>tylnole was not working. on the fouth day of hime being sick i had

>came home from work find him just burning up . i decided that it was

>time to take him the dr. so i took him to a local urgent care and

>they had no clue what was going on they said that they feared that

>he had meningitis so they sent us to the e.r and then once there the

>dr there told us the he had phemuniua and that his pain was just body

>aches from a viral infection and so was his rash. the gave him some

>meds and sent him home. so the next day he was no better . i forgot

>to mention that he screamed in pain when i picked him up or tried to

>move him . well anyway i took him to his dr and the dr thought that

>maybe it was the the flu , but insisted that ther was something else

>going on and being the dr that he is he said ok i will run some blodd

>work to see what is going on . so we get that done . we go back the

>next day and the dr says the he is pretty sure that my son has

>rematic fever but we will have wait for one more test to come back to

>make sure. so we go back the next day and he tells us that it is not

>reumatic fever and he is not sure what is going on with my son but he

>had a thought that is might be JRA . so he set up a appointment up

>with a specialist and send us 180 mile from home to portland,oregon

>we get there and the dr wants to do a bone scan. so we get a room and

>stay the night. next day they do the test and it show nothing and all

>this time his blood work is getting worse and worse . so the dr

>decieds that he wants to make sure that there is nothing else going

>on with him . my son wouldnt walk he did walk for seven days we

>were in the hospital for three days they did every test i think there

>is and and they all came back negative .by this time is has been

>only two weeks and i am scared out of my mind not know what is wrong

>with my some and why he keeps running a high fever has a rash and

>wont walk . so finally the dr says that he can say 99% sure that he

>has systmic JRA and now he is getting treated. but my head is still

>spinning and the have been so many ups and downs in such a short

>time . is this normal? well i guess i ahve rambled on enough for

>being a new person .

>

>my name is rosetta

>i live in oregon

>my son is dakota

>

>thanks to everyone for listening

>

>rosetta

>

October 21, 2004

Hello Emilie!

Welcome! I love this site, and you will learn a lot. Your story sounds

very similar to mine. My daughter is 4 and she was diagnosed with poly when she

was 16 months. We have been on just Enbrel for over a year. We just took her

off the injections this week to see if she has outgrown it. Our rheumy says we

have a 50/50 chance, so we're praying that she has outgrown it.

My daughter always gets respiratory infections. I put her on Shaklee vitamins

and it has made a world of difference. She takes the liqui lea, Vita C, and soy

protein every day. I think it has cut her infections almost down to nothing.

The most she gets now is a little runny nose that is gone in a day or two. It

has made such a difference, that our whole family takes the vitamins now, and I

am a Shaklee distributor! Go figure. Let me know if you want to know more

about it.

Barb and e (4 yrs. - poly)

You can email me personally at lange2@...

Hello I am new here

Hi! My name is Emilie and I have a 5 y/o daughter with

Polyarticular JRA. She was diagnosed between the ages of 2-3. The

first two years were hard, but now we are on Enbrel and everything

seems to be going better. She is alot more active than she used to

be and her appetite is great. I have a ? for everyone though.

seems to get sick alot. I was wondering if anyone elses child

has this problem to. Right now we are battling bronchitis. She is

also mildly allergic to all bug bites, and severly allergic to bee

stings. My biggest concern right now is the fact that she is in

kindergarten now and I am concerned with the time she might miss

from school. If anyone has any advice I could really use it at this

point.

thank you.

Emilie

October 21, 2004

Emilie-

Hi, and welcome. My daughter is almost 2.5 years old and was diagnosed this

June. She also has poly. My daughter too has allergies, hers are food. She is

allergic to All milk and dairy products and eggs. She has not as yet

encountered bee stings and bug bites, but we avoid them like the plague because

I am allergic to those! I think a high number of JRA children have allergies, I

just get that feeling from all I read here.

Tara and 2 (poly)