New to the Group

[Guest guest]

Cheri - our doctor at Emory University also told us that the drug can be

given orally. We talked with our pharmacist and he agreed. Make sure your

child get plenty of fluid with the methotrexate. It is important not be

dehydrated when taking it. Did your doctor talk about folic acid? Sandi Ken

Hunter

(8 Systemic)

<BR><BR><BR>**************************************<BR> AOL now offers free

email to everyone. Find out more about what's free from AOL at

http://www.aol.com.

[Guest guest]

Hi Cheri,

My daughter started out taking the injectible mtx orally-we would

just draw it up and squirt it in her mouth-then offer water to drink

right after. If you are going to put it in food, I'd suggest putting

the food on a spoon or fork and then adding the med to make sure she

gets the full dose. If you put it in her drink and she doesn't

finish it all, you are left to wonder just how much of the mtx she

actually got. As for the ibuprofen, our ins. didn't cover otc items,

so we were buying the otc kind too. She now has a secondary that

covers it per rx, so we get a huge stock bottle and I think it will

last a whole month. Your daughter is probably on a higher dose-but

if you can get it covered on a rx, then they should be able to give

you the full amount for the month for one co-pay. Hoping your

daughter feels better soon.

Tracey and Madi 23mo. systemic

-

>

> Hello.

>

> My name is Cheri. My daughter, Libby (4 1/2) was just diagnosed

with Pauciarticular JRA. A little history..

>

> One night in October (the 26th) she woke up crying in pain, I gave

her some medicine thinking she had a charlie horse or something and

she went back to sleep. The next day she was limping very

noticeably. She kept limping for the rest of the week, albeit not

very badly, and she also had some cold / flu symptoms so I took her

to the Ped. on the 30th. She had strep and was put on an

antibiotic. The limping was almost unnoticeable, but still present.

We went back to the Dr. and they asked a lot of questions and even

talked about JRA but ruled it out. Referred us to an Ortho. We went

to the Ortho right before Thanksgiving and he diagnosed her with

Transient Synovitis and said it would go away on it's own soon. It

didn't...we went back a few times...X-rays....he had no idea what was

wrong with her. Kept saying wait and see...it should pass.

>

> In the beginning of January She woke up one morning and could not

walk. I called the Ortho and demanded something be done. He

scheduled a bone scan for the next day at Medical University of South

Carolina. She had the bone scan and all they could say was that it

was something in her left foot. The Ortho put her in a " boot "

because he thought it could be a fracture or sprain. She was in the

boot for 3 weeks and we went in for a follow up. He declared her

healed and told us to take the boot off and let her muscles work

again. after 2 1/2 weeks of her still limping I called MUSC to find

another Ortho. We got an appointment for the next day and within 10

minutes the Pediatric Ortho declared JRA and made the appointment

with the Ped Rheumy.

>

> We had that appointment on Tuesday. She's got an appointment next

Wednesday for injections in her knee and both ankles. She was

started on Methotrexate...an extremely small dose.... .3 ml per

week. We got that today, and will start it tomorrow. She takes

Ibuprofen 3 times a day now. She has her first eye appointment March

28th.

>

> I think that's everything. I'm glad to have found this group and

hope to learn alot.

>

> I do have a question though. The Methotrexate says injectible..but

the Dr. said she can take it orally and we can mix it with anything,

like yogurt or juice. The directions say take orally with water, but

the drug facts say inject it. So I'm confused. Any help would be

greatly appreciated.

>

> Thanks,

>

> Cheri

>

>

[Guest guest]

--- In , " borneo626 " <ashleah_brack@...te:

>Hi Ash,

Great to hear that you've made progress on the protocol and I hope you

will soon make that final stride into 'full' health, at least full

enough to resume your college career without crashing.

As you have been working with a Klinghardt doctor, didn't he suggest

the KMT machine or is the expense the issue with that?

I've recently read Rosner's book 'Lyme Disease and Rife

Machines', which is a good guide to the different machines and other

alternative therapies for Lyme.

If you really want to stick to herbs, perhaps you'd like to ask

B a question regarding herbs to add to your protocol for the

stage you're at [planet thrive.com]?

Good luck anyway,

Carolyn

> I just found out about this group today. I have been on Buhners herb

> protocol for a year now through a Klinghrdt doctor in CA. I made a

> previous post which pretty much entails where I am at at the moment.

> I am now 100% pain free but I still suffer from neuro symptoms and

> moderate energy. I do great on a strict raw diet but it's difficult

> to maintain. I am kind of in limbo right now and thinking of getting

> rife type machine or switching to a new treatment. I would really

> like to do this with 100% herbs but it's a slow process and it's

> expensive. At the moment my college education is on hold so I am

> considering something like the MP. If any of you have any advice or

> encouragement I am all ears

>

> Thanks

> ash

>

[Guest guest]

Hi , can't tell you how to find an MD as most don't know how to

treat Candida. You might try to find a naturopath. You will need to

eliminate high carb foods and sugars from your diet. Add a number of

supplements - especially undenatured whey, inulin and selenium. If you

do a search you should find some posts on other supplements you should

take.

And, yes, Candida can cause all kinds of physical ailments including

loss of energy and memory, etc.

Gail

>

> Hi, I just joined your group because I think I may have candida. I

> don't know where to start to treat this. I would like to find a

doctor

> to help me, but I don't know how to find one. Could anyone give me an

> idea where to start and how to find a doctor? Also, does part of this

> illness cause you not to want to take care of yourself or hard to, no

> energy to do it? Does it cause a very bad memory?

>

> Thanks!

>

>

[Guest guest]

Thanks Gail for answering my post!

> >

> > Hi, I just joined your group because I think I may have candida.

I

> > don't know where to start to treat this. I would like to find a

> doctor

> > to help me, but I don't know how to find one. Could anyone give

me an

> > idea where to start and how to find a doctor? Also, does part of

this

> > illness cause you not to want to take care of yourself or hard

to, no

> > energy to do it? Does it cause a very bad memory?

> >

> > Thanks!

> >

> >

>

[Guest guest]

Hi leslie,

I am glad that you were able to locate our group and you will find

tons of information hear along with some very supportive folks. It

sounds like you daughter has sure been through alot in her young life.

We had experience with mtx injections. My daughter had lots of

fatigue while taking that med. She had other side effects such as

nausea, stomach cramps, vomiting, etc. she only had hair thinning in

the first couple of months of taking the drug and then that stopped.

I know some others on the list had more severe complications with

hair loss. I do believe that most likely your daughter will

experience renewed hair growth, while off the mtx. (others will

likely share their experiences with you)

As far as the power wc goes. I think its pretty rare for kids to use

scooters or wheelchairs unless its a last resort. Most of the time

the docs want to be sure that the child is still getting exercise and

moving their joints so that they don't loose any functioning. That

being said there are still times when walking may just be too much.

Such as when going to a theme park, Zoo, Mall etc..some have used,

wagons, strollers, and wheelchairs for these excursions.

Please feel welcome here and share any questions that you may have.

You will find this to be a safe place to visit and a wonderful,

knowledgeable and compassionate group to help you on this journey of

JRA.

(aundrea 11 systemic jra/gerd)-

-- In , " lesliesufarr " <lesliesufarr@...>

wrote:

>

> Hello, I am the mother of a 3 year old with systemic JRA, symptoms

> since she was 9 months of age, lots of steroids, and now on embrel,

> thalomid, arava, and just weaned off methotrexate injections. I

have

> not found anyone nearby (Central Maine) with similar experience and

was

> hoping others on this list would. some of my million questions

are:

> any suggestions to help with the fatique she seems to always have?

I am

> not sure if it is a symptom of the JRA or from the meds? anyone

using a

> power wheelchair or scooter with a child this age? She has had

quite a

> bit of hair thinning and receding from the methotrexate, will that

grow

> back now that she is off it?

> thanks,

>

[Guest guest]

You won't get rid of it, it goes into remission if you are lucky. The

disease can pass to child in utero, so you may or may not pass it on. So you

may or may not get PG either.

Treatments w/abxs and alternatives vary. LLMD is the Dr who treats lyme. Dx

by tests and observations/symptoms.

sarah

[ ] New to the group

Hello all: I was just diagnosed today. My husband and I just lost our baby

boy in May of this year. The docs say I have an incompetent

cervix...however, I was so tired for so long and I have bilateral

DeQuervain's disease (kind of like carpal tunnel) so I saw a rhematologist

who did the lyme test and 1 of the 10 types came back positive. It was the

p41 I think. Then there was another test done and 2 out of 3 were positive.

Long and short end. My husband and I are actively trying to get pregnant and

now the doctor wants us to wait. I do not know how long I've had this

disease and do not recall ever even being bit by a tick! I've just been

really tired and having a lot of joint pain in my wrists and shoulders. I'm

baffled by this diagnosis and am wondering what to do next.

I have a few questoins:

1. For women who wanted or are trying to get pregnant--how long did it

take you to get rid of this disease so you can TTC again? Were there any

adverse effects on your pregnancy?

2. For everyone-how do you know how long you've had lyme?

3. what treatments are you doing?

4. how long does it take to get rid of it

5. how do you know it's gone?

6. how were you diagnosed?

7. what kind of doctors specialize in lyme disease

Thanks in advance.

Elicia

[Guest guest]

Hi Elicia,

I'm so sorry to hear of the loss of your little one. I'm sure others more

knowledgeable on Lyme than myself will reply to you but I just wanted to let you

know that I think your doctor has given you good advice on waiting to get

pregnant again.

I myself had 2 children while having undiagnosed Lyme. Both deliveries were

premature and involved numerous difficulties along the way including a weak

cervix necessitating bed rest and hospital stays. Both children have had life

long problems. Every day is a stuggle.

If you are not experiencing many symptoms, perhaps treatment will progress

swiftly and you'll be back to baby planning before you know it.

You didn't mention what country you are in. That would be helpful for the group

to know.

Best Wishes,

Barbara

[ ] New to the group

Hello all: I was just diagnosed today. My husband and I just lost our baby boy

in May of this year. The docs say I have an incompetent cervix...however, I was

so tired for so long and I have bilateral DeQuervain's disease (kind of like

carpal tunnel) so I saw a rhematologist who did the lyme test and 1 of the 10

types came back positive. It was the p41 I think. Then there was another test

done and 2 out of 3 were positive. Long and short end. My husband and I are

actively trying to get pregnant and now the doctor wants us to wait. I do not

know how long I've had this disease and do not recall ever even being bit by a

tick! I've just been really tired and having a lot of joint pain in my wrists

and shoulders. I'm baffled by this diagnosis and am wondering what to do next.

I have a few questoins:

1. For women who wanted or are trying to get pregnant--how long did it take

you to get rid of this disease so you can TTC again? Were there any adverse

effects on your pregnancy?

2. For everyone-how do you know how long you've had lyme?

3. what treatments are you doing?

4. how long does it take to get rid of it

5. how do you know it's gone?

6. how were you diagnosed?

7. what kind of doctors specialize in lyme disease

Thanks in advance.

Elicia

[Guest guest]

((Hugs)))

I am so deeply sorry to hear about the loss of your son. I can't

imagine what you are going thru. I am so sorry.

I am new to this whole Lyme thing also....so, I dont have too many

answers for you.

I will keep you and your family in my prayers if that is alright.

>

> Hello all: I was just diagnosed today. My husband and I just

lost our baby boy in May of this year. The docs say I have an

incompetent cervix...however, I was so tired for so long and I have

bilateral DeQuervain's disease (kind of like carpal tunnel) so I saw

a rhematologist who did the lyme test and 1 of the 10 types came

back positive. It was the p41 I think. Then there was another test

done and 2 out of 3 were positive. Long and short end. My husband

and I are actively trying to get pregnant and now the doctor wants

us to wait. I do not know how long I've had this disease and do not

recall ever even being bit by a tick! I've just been really tired

and having a lot of joint pain in my wrists and shoulders. I'm

baffled by this diagnosis and am wondering what to do next.

>

> I have a few questoins:

> 1. For women who wanted or are trying to get pregnant--how long

did it take you to get rid of this disease so you can TTC again?

Were there any adverse effects on your pregnancy?

> 2. For everyone-how do you know how long you've had lyme?

> 3. what treatments are you doing?

> 4. how long does it take to get rid of it

> 5. how do you know it's gone?

> 6. how were you diagnosed?

> 7. what kind of doctors specialize in lyme disease

>

> Thanks in advance.

>

> Elicia

>

>

>

[Guest guest]

" Mrs. Elicia Timberlake " <elicia_wright@...> wrote: Hello

all: I was just diagnosed today. My husband and I just lost our baby boy in May

of this year. The docs say I have an incompetent cervix...however, I was so

tired for so long and I have bilateral DeQuervain's disease (kind of like carpal

tunnel) so I saw a rhematologist who did the lyme test and 1 of the 10 types

came back positive. It was the p41 I think. Then there was another test done and

2 out of 3 were positive. Long and short end. My husband and I are actively

trying to get pregnant and now the doctor wants us to wait. I do not know how

long I've had this disease and do not recall ever even being bit by a tick! I've

just been really tired and having a lot of joint pain in my wrists and

shoulders. I'm baffled by this diagnosis and am wondering what to do next.

I have a few questoins:

1. For women who wanted or are trying to get pregnant--how long did it take you

to get rid of this disease so you can TTC again? Were there any adverse effects

on your pregnancy?

2. For everyone-how do you know how long you've had lyme?

3. what treatments are you doing?

4. how long does it take to get rid of it

5. how do you know it's gone?

6. how were you diagnosed?

7. what kind of doctors specialize in lyme disease

Thanks in advance.

Elicia

[Guest guest]

thanks.

hvn_safe <hvn_safe@...> wrote: ((Hugs)))

I am so deeply sorry to hear about the loss of your son. I can't

imagine what you are going thru. I am so sorry.

I am new to this whole Lyme thing also....so, I dont have too many

answers for you.

I will keep you and your family in my prayers if that is alright.

[Guest guest]

I have been reading that its transmittable within families and you can be

born with it.

Heidi

************************************** See what's new at http://www.aol.com

[Guest guest]

Most of us here use Armour and love it. The best site is www

stopthethyroidmadness.com docs will start her slow on Armour so it may take

a few weeks to feel better. Keep us posted!

-- New to the group

Hi,

My 21 yr old daughter was just diagnosed with hypothyroid. She's

developmentally disabled, lives with me and is still like having a

minor child, doesn't drive, etc. So I am still the basic caregiver.

I believe the problem started at age 18 when seeing a doctor for OCD

he prescribed Lexapro. She immediately gained quite a bit of weight

and when we found out it was due to the Lexapro she stopped taking it

after only 2 weeks. Yet the weight problem continues to this day,

prior to Lexapro she was the right weight (or less) for her height,

was always a skinny little kid when younger. Now with all the extra

Weight she's miserable.

Last week we got the results from her complete blood work up and the

news about her thyroid.

I have a couple questions, one is, is there a website or two that you

know of that will give me LOTS of info, I need to get educated. And

another is, has anyone else linked the possibilities of suspecting a

drug such as Lexapro for causing hypothyroid?

The doctor prescribed Synthroid for her but a relative who's been

through this said don't let her take Synthroid, I haven't, and get a

prescription for Amour. She has an appointment tomorrow and I'm

going to ask for the medication change. If she won't do it one of

two other doctors will.

I'm very interested in people's experiences with different thyroid

medications.

And, is hypothyroid a permanent condition???

Looking forward to some words of wisdom, thanks!

Terry

[Guest guest]

Another is about.com. Click on " health " and then click on " hypothyroidism. " I

wish your

daughter well. Support from this group, if it is something she can do, may be

helpful to

her and you as well. You both are in my thoughts. They more you know the

better.

Venizia

>

> Most of us here use Armour and love it. The best site is www

> stopthethyroidmadness.com docs will start her slow on Armour so it may take

> a few weeks to feel better. Keep us posted!

>

> -- New to the group

>

>

> Hi,

>

> My 21 yr old daughter was just diagnosed with hypothyroid. She's

> developmentally disabled, lives with me and is still like having a

> minor child, doesn't drive, etc. So I am still the basic caregiver.

>

> I believe the problem started at age 18 when seeing a doctor for OCD

> he prescribed Lexapro. She immediately gained quite a bit of weight

> and when we found out it was due to the Lexapro she stopped taking it

> after only 2 weeks. Yet the weight problem continues to this day,

> prior to Lexapro she was the right weight (or less) for her height,

> was always a skinny little kid when younger. Now with all the extra

> Weight she's miserable.

>

> Last week we got the results from her complete blood work up and the

> news about her thyroid.

>

> I have a couple questions, one is, is there a website or two that you

> know of that will give me LOTS of info, I need to get educated. And

> another is, has anyone else linked the possibilities of suspecting a

> drug such as Lexapro for causing hypothyroid?

>

> The doctor prescribed Synthroid for her but a relative who's been

> through this said don't let her take Synthroid, I haven't, and get a

> prescription for Amour. She has an appointment tomorrow and I'm

> going to ask for the medication change. If she won't do it one of

> two other doctors will.

>

> I'm very interested in people's experiences with different thyroid

> medications.

>

> And, is hypothyroid a permanent condition???

>

> Looking forward to some words of wisdom, thanks!

>

> Terry

>

>

>

>

>

>

[Guest guest]

Yes, absolutely push for the Armour, but also you may want to

consider a possible iodine deficiency as a potential underlying

cause.

Sam

>

>

> Hi,

>

> My 21 yr old daughter was just diagnosed with hypothyroid. She's

> developmentally disabled, lives with me and is still like having a

> minor child, doesn't drive, etc. So I am still the basic caregiver.

>

> I believe the problem started at age 18 when seeing a doctor for

OCD

> he prescribed Lexapro. She immediately gained quite a bit of

weight

> and when we found out it was due to the Lexapro she stopped taking

it

> after only 2 weeks. Yet the weight problem continues to this day,

> prior to Lexapro she was the right weight (or less) for her height,

> was always a skinny little kid when younger. Now with all the

extra

> weight she's miserable.

>

> Last week we got the results from her complete blood work up and

the

> news about her thyroid.

>

> I have a couple questions, one is, is there a website or two that

you

> know of that will give me LOTS of info, I need to get educated.

And

> another is, has anyone else linked the possibilities of suspecting

a

> drug such as Lexapro for causing hypothyroid?

>

> The doctor prescribed Synthroid for her but a relative who's been

> through this said don't let her take Synthroid, I haven't, and get

a

> prescription for Amour. She has an appointment tomorrow and I'm

> going to ask for the medication change. If she won't do it one of

> two other doctors will.

>

> I'm very interested in people's experiences with different thyroid

> medications.

>

> And, is hypothyroid a permanent condition???

>

> Looking forward to some words of wisdom, thanks!

>

> Terry

>

[Guest guest]

Hi , just wanted to welcome you. I smiled when I read JuJu, that is soooooo cute. My daughters jia has mostly been a bear with the uveitis side of it. This group is amazing, and it seems like every one is dealing with something different, but there is always someone who can relate to what you are going through. ' & a 11 jia/uveitismome2juliahna <mome2juliahna@...> wrote: Hi all. I'm , 29, mommy to hna who is 20 months old

andrecently diagnosed JRA. I'm a single mom and I must admit it is veryhard not only being a single mom but a single mom to a child with JRA. It is so nice to know that I now have a place to come and have otherswho understand my sadness and frustration. I look forward to gettingto know you all and look forward to sharing my JuJu's story. __________________________________________________

[Guest guest]

Hi and Welcome. I am sorry you have to deal with all this, but glad you found this group! Rest assured you will find lots of comfort here and many virtual shoulder's to lean on.......

Alia and Caroline, age 5, poly and uveitis

new to the group

Hi all. I'm , 29, mommy to hna who is 20 months old and

recently diagnosed JRA. I'm a single mom and I must admit it is very

hard not only being a single mom but a single mom to a child with JRA.

It is so nice to know that I now have a place to come and have others

who understand my sadness and frustration. I look forward to getting

to know you all and look forward to sharing my JuJu's story.

Email and AIM finally together. You've gotta check out free AOL Mail!

[Guest guest]

I know there was a kids site started but don't know how busy it is or what ages. Hope someone chimes in for you and your daughter. My baby is turning 21 in December so not much help there. Üeemmamomsandy <bsbbrown@...> wrote: I actually used to read the posts from this group several years ago when my daughter was first diagnosed. The information was very helpful when we were first learning about JRA. My daughter was diagnosed with poly-JRA at 18 months and is now seven years old. She is currently on Enbrel and

methotrexate. She does very well on these medications, flaring for a few days when she catches a virus. Last school year she was sick quite regularly with everything coming and going, but this year has been good so far! My question for the group is - does anyone have a son or daughter around my daughters age with JRA? She has expressed a desire to speak or write to someone who is going through what she is experiencing. We live in Northwest Ohio and do not know anyone with JRA. I spoke with my Rheumy's nurse about talking to some of her patients and she said she would mention my Emma and call if anyone expressed interest. I look forward to your responses and welcome any questions to anyone who might just be starting down this JRA "road". We have learned a great deal in the six years we have been dealing with it. Sandy __________________________________________________

[Guest guest]

Hi,

I have a 7 (2 weeks until 8!) year old little girl with JRA. We

might try and hook them up. We do go to AF functions and she does

really try to interact with some of the kids, but I think the

meetings are too short & intermittent for her to really get a

relationship going. We're in AZ. You can email me direct & we could

work something out...how were you thinking they would get to know

each other? I know my kid would be THRILLED to get something from a

new friend...just not sure how she'd do on the reciprocating end of

things...happy to give it a go though!

Let me know what you think!

Alice

I

actually used to read the posts from this group several years ago

> when my daughter was first diagnosed. The information was very

> helpful when we were first learning about JRA. My daughter was

> diagnosed with poly-JRA at 18 months and is now seven years old.

> She is currently on Enbrel and methotrexate. She does very well

on

> these medications, flaring for a few days when she catches a

virus.

> Last school year she was sick quite regularly with everything

coming

> and going, but this year has been good so far!

>

> My question for the group is - does anyone have a son or daughter

> around my daughters age with JRA? She has expressed a desire to

> speak or write to someone who is going through what she is

> experiencing. We live in Northwest Ohio and do not know anyone

with

> JRA. I spoke with my Rheumy's nurse about talking to some of her

> patients and she said she would mention my Emma and call if anyone

> expressed interest.

>

> I look forward to your responses and welcome any questions to

anyone

> who might just be starting down this JRA " road " . We have learned

a

> great deal in the six years we have been dealing with it.

>

> Sandy

>

>

>

>

>

> __________________________________________________

>

[Guest guest]

Just wanted to say hello and Welcome! I was raised in Ohio although not in the same region as you. I grew up in Yellow Springs just outside Dayton. I went to U dayton for undergrad. My mom and sister still live in YS and also spend summers up near Sandusky (Pelee Island, Canada). I live in a Washington DC suburb now, with my husband and four kiddos . I think that's a really neat idea for your daughter to be able to write to another child with JRA around the same age. My daughter is just 3 years old but I think that's a great idea for when she's older. Anyway, welcome and hope you find a Pen pal for your little girl -Hadley (Isabelle, 3 yrs)emmamomsandy <bsbbrown@...> wrote: I actually used to read the posts from this group several years ago when my daughter was first diagnosed. The information was very helpful when we were first learning about JRA. My daughter was diagnosed with poly-JRA at 18 months and is now seven years old. She is currently on Enbrel and methotrexate. She does very well on these medications, flaring for a few days when she catches a virus. Last school year she was sick quite regularly with everything coming and going, but this year has been good so far! My question for the group is - does anyone have a son or daughter around my daughters age with JRA? She has expressed a desire to

speak or write to someone who is going through what she is experiencing. We live in Northwest Ohio and do not know anyone with JRA. I spoke with my Rheumy's nurse about talking to some of her patients and she said she would mention my Emma and call if anyone expressed interest. I look forward to your responses and welcome any questions to anyone who might just be starting down this JRA "road". We have learned a great deal in the six years we have been dealing with it.Sandy

[Guest guest]

Hello Alice -

Thanks for your response. I would be willing to give a try and let

our girls email a bit. I am unsure how to email you directly -

sorry, I am a bit of a novice at this stuff. Could you email me

first? LOL

Sandy

I

> actually used to read the posts from this group several years ago

> > when my daughter was first diagnosed. The information was very

> > helpful when we were first learning about JRA. My daughter was

> > diagnosed with poly-JRA at 18 months and is now seven years

old.

> > She is currently on Enbrel and methotrexate. She does very

well

> on

> > these medications, flaring for a few days when she catches a

> virus.

> > Last school year she was sick quite regularly with everything

> coming

> > and going, but this year has been good so far!

> >

> > My question for the group is - does anyone have a son or

daughter

> > around my daughters age with JRA? She has expressed a desire

to

> > speak or write to someone who is going through what she is

> > experiencing. We live in Northwest Ohio and do not know anyone

> with

> > JRA. I spoke with my Rheumy's nurse about talking to some of

her

> > patients and she said she would mention my Emma and call if

anyone

> > expressed interest.

> >

> > I look forward to your responses and welcome any questions to

> anyone

> > who might just be starting down this JRA " road " . We have

learned

> a

> > great deal in the six years we have been dealing with it.

> >

> > Sandy

> >

> >

> >

> >

> >

> > __________________________________________________

> >

[Guest guest]

Hi Beverly -

The eye pain you speak of could be uveitis. Which should be checked

out. My son was first diagnosed with uveitis, then we were referred

to a ped rheumatologist to see if something systemic was causing

it. My husband & I were 100% sure that appt. was going to be a

waste of money because Grant had never complained of pain and

definately had no swollen joints. We were wrong - the rheumy found

3 swollen joints (one of them quite significant) and diagnosed Grant

with psoriatic arthritis 6 weeks later. I'm not familiar with

at all but I would agree with Helen to go see a Ped. rheumy.

Good Luck! & Grant,10, PsA/Uveitis

-- In , " hburger64 " <hburger64@...> wrote:

>

>

> HI Beverly.

>

> I would start to keep an diary of all your sons problems..

document

> times and duration of fevers, takes pics of rashes. Journal when

he

> complains of any pain and where it is...then get into see a ped

> Rhuemy, its very possible he might have systemic JRA..

>

> Good luck and let us know what you find out..

>

> Hugs Helen and (7,systemic)

>

>

> >

> >

> > Hello,

> >

> > My name is Beverly, and I have a son who is 7 and has been

> diagnosed

> > at 2 at the Shriner's hospital as having (periodic fever

> > syndrome). Well, his symptoms are changing. This April he

> started

> > getting rashes. They usually show up after his fever. He has

> also

> > complained during some of his fever episodes of having

> excruciating

> > eye pain (photophobia) severe headaches, and bad stomachaches.

> When

> > he is well, he complains that his knees, legs hurt. The other

day

> > when I hugged him, he cried out in pain. When he complains of

his

> > knees, feet, legs, etc. hurting, I don't seeing swelling. Only

> > recently did I see swelling briefly behind his knee and a month

> > later his wrist had a nodule sticking out. It was hot and red.

> It

> > was gone the next morning.

> >

> > Shane has always had a very sensitive immune system. When he

> would

> > get a mosquito bite, it would get very swollen, hot and red. I

> > noticed that other people on this website have experienced the

> same

> > thing with bug bites.

> >

> > SO . . . . what do you guys think?? Could my son have systemic

> > JRA? He doesn't have a low grade fever all the time. When he

> gets

> > his fevers it usually gets as high as 105°F. It's very hard for

> him

> > to walk. He throws up, hurts all over and can hardly function.

> We

> > were told to give him prednisone when his fever is at it's

highest

> > and Shane is at his worst. Once Shane is really sick, we give

him

> 2

> > tsp. of prednisone and within hours his symptoms are all gone.

He

> > is usually well for 3-4 weeks, then he gets sick again. During

> his

> > well time, he still complains that his legs, feet, knees hurt.

> ALso

> > when he is asleep he cries out in pain, again, saying that his

> legs,

> > arm, etc. hurts.

> >

> > Also, Shane has been seeing specialist since he was two. He

> started

> > getting sick when he was 3 months old. He is now seeing a

doctor

> at

> > Stanford and UC San Francisco. I think we have a long road ahead

> of

> > us. I know that JRA is very difficult to diagnose, and Shane

has

> > been tested for the rheumatology blood work but it has always

come

> > back negative. Could he still have JRA?

> >

> > Any information or help would be greatly appreciated.

> >

> > Thank you.

> >

> > Beverly

> > Roseville, CA

> > mom to Nick (10), Shane (7) and Madalyn 5)

>

[Guest guest]

Joe: Has your LLMD evaluated you for coinfections? Even though she

tested negative for bartonella, my daughter's doc suspected she had

it. When he started treating her for it anyway, she showed a big burst

of improvement.

Also, I've come to believe that it's very important to address

detoxification issues. As one doctor put it: " The body of a

chronically ill person is like New York City during a garbage strike. "

Sorry you've suffered so much. Best of luck to you.

D.

>

> I've had Lyme for a year now. I didn't know what it was for the first

> 4 months. I tested positive for Igenex IGG IGM.

>

> I've been on antibiotics for 7 months now and I don't feel like I am

> going to be well anytime soon. Every time I start getting well I have

> a relapse.

>

> I feel helpless. I stopped working, thinking that if I took it easy

> and rested I would have a better chance at eradicating it from my

system.

>

> I've done everything my LLMD has told me to do, and still I'm not

> feeling great.

>

> I don't know what I am supposed to do. Do I go back to work and hope

> that I can deal with it? I know that it is near impossible to get

> disability with Lyme.

>

> What do the rest of you chronic people do? I know I may never be able

> to get this into remission, it seems a lot of people aren't able to.

>

> I don't think I can work a normal job anymore. Do I just spend the

> rest of my money and hope that I get better in time before I run out

> of money?

>

> At wits End

>

> Joe

>

[Guest guest]

Personally, I treat myself, and I now live as normals as long as I take my

supplements. I would do research on recommended lyme treatments, both

prescription and non-prescription (herbals, diet, vitamins, zappers, etc.) and

be

active in your treatment because when your doc isn't helping you enough, its

time to do something different or in addition.

Heidi N

From Joekinjoe:

" I've been on antibiotics for 7 months now and I don't feel like I am

going to be well anytime soon. Every time I start getting well I have

a relapse.

I feel helpless. I stopped working, thinking that if I took it easy

and rested I would have a better chance at eradicating it from my system. "

**************************************Check out AOL's list of 2007's hottest

products.

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[Guest guest]

thanks for the input, I've been trying to do more

research on herbals. do you have any websites or

suggestions on where to start?

--- Ambitionn01@... wrote:

> Personally, I treat myself, and I now live as

> normals as long as I take my

> supplements. I would do research on recommended

> lyme treatments, both

> prescription and non-prescription (herbals, diet,

> vitamins, zappers, etc.) and be

> active in your treatment because when your doc isn't

> helping you enough, its

> time to do something different or in addition.

>

> Heidi N

>