Introduction

[Guest guest]

i have celiac and complications too anna, and you're right for coming here

because cutting out gluten is often not enough. i wish you speedy healing. keep

up the good work!

andrea

[Guest guest]

Hi , how long have you been on the diet? Have your sypmtoms improved?

I thought when I went g/f my symptoms would go away too. But over the years I

seem to be getting worse.

>

> i have celiac and complications too anna, and you're right for coming here

because cutting out gluten is often not enough. i wish you speedy healing. keep

up the good work!

> andrea

>

[Guest guest]

2 months, but not without little cheats - and i'm still having major vitamin B

issues that i'm working on.

the main thing for a lot of celiacs is getting off all grains and sugars. our

digestive system just doesn't break them down right and it feeds the bad guys.

improvements so far have been: more regular heart beat, less insomnia, no more

hypoglycemia i think, and the tummy is working a little better although i still

have a tough time tolerating many things and am still having die off... anyway

hope that helps! i'm sure i'll send in a success story at some point but i want

to be completely on the diet first and see some more improvements so i can

testify about them!

andrea

[Guest guest]

P.S.!! Sorry - I remembered a couple of things after sending my post...! I

also have had chronic IBS-type digestive system problems... And I'd totally

forgotten about how those first few years of being sick I had very frequent

bouts of canker-sore outbreaks on my tongue. I'd get 5-10 sores at a time!

They were SO painful... No doctor could ever tell me why I would get

these. But they always seems to occur during times of extra stress or when

I'd have a bad night of insomnia... This always felt " infectious " to me for

some reason...

[Guest guest]

>

> Good Morning,

>

> I just joined this group and am excited to achieve improved health! My

> main issues are celiac sprue and high blood pressure. I am positively

> determined to get off that awful blood pressure med, if at all possible. I

> have been told I will be on it the rest of my life!! My b.p. skyrocketed

> after numerous stressful events occurred consecutively, and I have been on

> it ever since.

+++Hi Jen. Welcome to our group. Many people who have candida are also celiacs

and vice versa, so that's why my program doesn't include grains of any kind.

Also we've had many members with high blood pressure which has totally

normalized on this program - see these Success Stories:

http://www.healingnaturallybybee.com/success/ss23d.php

http://www.healingnaturallybybee.com/success/ss47a.php

http://www.healingnaturallybybee.com/success/ss58c.php

There are others too, and I haven't posted every success members of this group

have had on my program, which will be in our Message archives.

Having enough good ocean sea salt I recommend had been most important for

normalizing blood pressure - see this article to understand why:

http://www.healingnaturallybybee.com/articles/salt1.php

>

> One other thing, I had a colon resect back in 1994, as a kid, due to

> endometriosis. Every since then I have followed the counsel of the Dr. and

used psyllium husk daily. I have tried to go without it, but don't experience

success. It causes bloating etc. and I would rather not have to use it.

+++It would be important for you to get completely on this program (diet plus

supplements), and only have carbs (plant foods) that are well-cooked so that

their cell walls (fibers) are broken down. Fibers are very damaging to our

health as many articles on my website explain:

http://www.healingnaturallybybee.com/articles/menu3_2_2.php

http://www.healingnaturallybybee.com/articles/menu3.php

Since you are new ensure you read two important articles so you know what you

need to do and why:

How to Successfully Overcome Candida:

http://www.healingnaturallybybee.com/articles/intro2.php

Curing Candida, How to Get Started:

http://www.healingnaturallybybee.com/articles/intro1.php

For encouragement and inspiration see these wonderful Success Stories by members

of this group:

http://www.healingnaturallybybee.com/success/index.php

The best in health, Bee

[Guest guest]

Hi I have a duaghter that went through the same problems. What help her is after

her first 4th month i put her in activated charcoal with Buhner Priotocol and

antibiotics, and started Neurofeedback-she did wonderful in her school work.

Insurance doesnt pay for it , only they will cover if the child has Autism.. I

pay her treatment through out of my pocket. She uses Buhner protocol, i give

ehr cats claw in the morning and the evening andrographis, resveratrol. This

help her sleep. Go to

http://planetthrive.com/wp-content/uploads/2010/11/herbs6.jpg

Hope your children feels betetr, I have a son who also has Lyme.

________________________________

From: lesliefarhangi <lesliefarhangi@...>

Sent: Wed, November 24, 2010 1:24:41 PM

Subject: [ ] introduction

Hello,

I just joined the group; I have a fair amount of experience with Lyme Disease as

all three of my children have had it, as have I, four times. However my 11 year

old was just tested by a neuropsychologist and was found to have severe

cognitive impairment that both the tester and our doctor believe are related to

lyme. I have a doctor's appt. next week; my son is currently on doxy and

zithromax, and I believe the next step is IV antibiotics.

I joined the group to learn about others' experiences with the oral antibiotics

and also to hopefully hear some good stories of kids eventually doing better

after treatment. If you do a web search the prognosis does not look very good.

Have any kids recovered their cognitive function and maintained it for years

after treatment?

Thank you so much for any help and/or advice!

[Guest guest]

I have a free Lyme Resource computer cd. It contains lots of peoples

testimonials on what worked and did not work for them. You can get a copy

free at my web site below.

I personally only know one child who has Chronic Lyme. I can send you the

info about he and his mother's journey. He is currently in total remission

but it wasn't on antibiotics. He was a patient of Dr J's for about 2 years

and was not improving. They went and did an alternative medicine route.

www.lyme-resource.com

You can lead a person to a fact, but you can't make them think! -

[ ] introduction

Hello,

I just joined the group; I have a fair amount of experience with Lyme

Disease as all three of my children have had it, as have I, four times.

However my 11 year old was just tested by a neuropsychologist and was found

to have severe cognitive impairment that both the tester and our doctor

believe are related to lyme. I have a doctor's appt. next week; my son is

currently on doxy and zithromax, and I believe the next step is IV

antibiotics.

I joined the group to learn about others' experiences with the oral

antibiotics and also to hopefully hear some good stories of kids eventually

doing better after treatment. If you do a web search the prognosis does not

look very good. Have any kids recovered their cognitive function and

maintained it for years after treatment?

Thank you so much for any help and/or advice!

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

Lyme Disease News continually updated from thousands of sources around the

net: http://www.topix.net/health/lyme-disease

MedWorm: The latest items on: Lyme Disease

http://tinyurl.com/23dgy8

[Guest guest]

Positive thoughts and energy greatly appreciated!

Robinette

I do believe you have found a good place for that, Robinette. This group has

meant SO much to me!!! Far too many people are swept away and lost under the

blanket of false assumptions and misunderstanding of the effects of Lyme. This

group does help make a difference just in our commonality alone. Yet, in numbers

we are so much more likely to be heard and, I believe that we, in our chorus,

can make and will make a difference.

God bless you for being there for your huz!

He who binds himself to a joy,

Does the winged life destroy.

But he who kisses it as it flies,

Lives in eternity’s sunrise. ~ Blake

From: Robinette <rjdralston@...>

Subject: [ ] Introduction

Date: Sunday, December 19, 2010, 1:41 PM

Hello,

Thank you for letting me join your group. I am a veterinarian that deals with

Lyme disease on a regular basis, but it wasn't until my husband was finally

diagnosed last Spring that I grew to have a greater appreciation for what the

chronic disease can do. Going back through his medical history it appears he

contracted Lyme disease in 1999. He is now showing neurological signs and was

not able to tolerate treatments. We head out to Washington DC tomorrow hoping

for more ideas. Positive thoughts and energy greatly appreciated!

Robinette

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

Lyme Disease News continually updated from thousands of sources around the

net: http://www.topix.net/health/lyme-disease

MedWorm: The latest items on: Lyme Disease

http://tinyurl.com/23dgy8

[Guest guest]

Hi - welcome to the group. I hope your husband is seeing a Lyme

Literate doctor? Also called an LLMD.

Most " all " mainstream physicians either don't believe in chronic lyme -

or don't have a clue how to treat it - or are afraid to treat it because

of restrictive guidelines on prescribing medicine.

When you say he " was not able to tolerate treatments " - it may be that

he was experiencing a herx reaction to the meds. A herx is a sign that

the lyme bacteria are being killed - but you may get much sicker before

you begin to improve. If he can stick out through the herx it would be

good (but I know that some herx's are simply un-bearable, in which an

LLMD will know what to do).

Hope you guys get some help. I live in (near) DC. If there's anything

I can do to help just let me know.

Don

On 12/19/2010 2:41 PM, Robinette wrote:

> Hello,

>

> Thank you for letting me join your group. I am a veterinarian that deals with

Lyme disease on a regular basis, but it wasn't until my husband was finally

diagnosed last Spring that I grew to have a greater appreciation for what the

chronic disease can do. Going back through his medical history it appears he

contracted Lyme disease in 1999. He is now showing neurological signs and was

not able to tolerate treatments. We head out to Washington DC tomorrow hoping

for more ideas. Positive thoughts and energy greatly appreciated!

>

> Robinette

>

>

>

> ------------------------------------

>

> Lyme Disease News continually updated from thousands of sources around the

> net: http://www.topix.net/health/lyme-disease

>

> MedWorm: The latest items on: Lyme Disease

> http://tinyurl.com/23dgy8

>

[Guest guest]

Thank you! We have been dealing with a LLMD (which our primary MD also supports

and went to med school with). His herx reactions are so severe, causing a near

catatonic state and such extreme respiratory depression his LLMD decided to stop

all treatments and referred us to DC. We have also started seeing a great

neurologist and physical therapist that deal with a number of chronic lyme

patients.

I'm hoping to get better versed in the current literature out there to support

treatments outside of the ISDA 'guidelines'. I have no problem fighting this

battle from my end - no idea how people without a close family could possibly

get this all done.

One day at a time.

Thanks for the advice - hoping to need more as we continue to move forward.

Robinette

> > Hello,

> >

> > Thank you for letting me join your group. I am a veterinarian that deals

with Lyme disease on a regular basis, but it wasn't until my husband was finally

diagnosed last Spring that I grew to have a greater appreciation for what the

chronic disease can do. Going back through his medical history it appears he

contracted Lyme disease in 1999. He is now showing neurological signs and was

not able to tolerate treatments. We head out to Washington DC tomorrow hoping

for more ideas. Positive thoughts and energy greatly appreciated!

> >

> > Robinette

> >

> >

> >

> > ------------------------------------

> >

> > Lyme Disease News continually updated from thousands of sources around the

> > net: http://www.topix.net/health/lyme-disease

> >

> > MedWorm: The latest items on: Lyme Disease

> > http://tinyurl.com/23dgy8

> >

[Guest guest]

Hi Robinette,

If you want some feedback on DC tx possibilities, please give a call. I'm in

land and my son and I have both had chronic neuro lyme for 17+ years. We've

either gone to or know of just about everyone in a 3 or 4 state area.

Talk to you soon,

Cindi

410-771-4994 O

443-980-7369 Cell

[ ] Re: Introduction

Thank you! We have been dealing with a LLMD (which our primary MD also

supports and went to med school with). His herx reactions are so severe, causing

a near catatonic state and such extreme respiratory depression his LLMD decided

to stop all treatments and referred us to DC. We have also started seeing a

great neurologist and physical therapist that deal with a number of chronic lyme

patients.

I'm hoping to get better versed in the current literature out there to support

treatments outside of the ISDA 'guidelines'. I have no problem fighting this

battle from my end - no idea how people without a close family could possibly

get this all done.

One day at a time.

Thanks for the advice - hoping to need more as we continue to move forward.

Robinette

> > Hello,

> >

> > Thank you for letting me join your group. I am a veterinarian that deals

with Lyme disease on a regular basis, but it wasn't until my husband was finally

diagnosed last Spring that I grew to have a greater appreciation for what the

chronic disease can do. Going back through his medical history it appears he

contracted Lyme disease in 1999. He is now showing neurological signs and was

not able to tolerate treatments. We head out to Washington DC tomorrow hoping

for more ideas. Positive thoughts and energy greatly appreciated!

> >

> > Robinette

> >

> >

> >

> > ------------------------------------

> >

> > Lyme Disease News continually updated from thousands of sources around the

> > net: http://www.topix.net/health/lyme-disease

> >

> > MedWorm: The latest items on: Lyme Disease

> > http://tinyurl.com/23dgy8

> >

[Guest guest]

Hi Michele,

If you are looking for in depth technical information on AIH, the

following document is very informative:

http://www.aasld.org/practiceguidelines/Documents/AIH2010.pdf

in Napa California, age 69, dx 9/2010 stage 4 PBC; IBS, Sjogren’s

(Dutch expatriate)

--------------------------------------------------------------------------------\

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

-----Original Message-----

From: YankY

I hope I can read some more about AIH here, because in the Netherlands there

is almost nothing to find about it. There aren't a lot of people that have

AIH in the Netherlands and they are still doing a study about in in the

hospitals.

[Guest guest]

Hi Michele and welcome to the group. I am and I live in West Virginia. I

have had AIH since 1996 and have been on just Imuran for a number of years now.

I also have taken the Prednisone and Imuran combination over the years. I took

prednisone for 10 yrs before I finally have been able to stay off of it with

success.

There are many people here who can help you and answer your questions. I beleive

we even have someone from the Netherlands on here.

Any questions you have feel free to ask them we have all been there and we all

had questions. Everyone here is very friendly and willing to help.

The prednisone is hard on everyone but hopefully you won't have to take it for

long or at least not a high dose. What levels of prednisone and Imuran are you

taking? I am taking 100mg of Imuran now and no prednisone for almost 3 yrs.

There is a great book about that is recommended to all newbies but I can't

remember the name of it right now. I am sure someone will be telling you about

it soon.

Welcome and ask any questions you have we are all here for you.

the WV hillbilly

AIH,Sjogrens, etc....

LOVE IS IN ALL THINGS AND IN ALL THINGS IS LOVE

________________________________

From: YankY <contact@...>

Sent: Mon, December 27, 2010 6:29:31 PM

Subject: [ ] introduction

Hi all,

My name is Michele, I'm 43 years old, single, no kids, 2 dogs and 2 cats. I live

in the Netherlands, but was born in Brooklyn, NY. A part of my family lives in

New Jersey, del and Colorado.

2 years ago they discovered I have AIH. I have been coping with the decease and

trying to except it, but it is hard.

In the beginning I have been on prednison and later on they started me on

Imuran. It went very good for a while but since last week I had to start on

Prednison again, for 4 weeks and after that the test will show what the next

step will be.

I hope I will be able to stop with the prednison, because I feel very depressed

of it. I rather have more Imuran and no Prednison at all, but sometimes you just

have to be happy you are still alive.

I hope I can read some more about AIH here, because in the Netherlands there is

almost nothing to find about it. There aren't a lot of people that have AIH in

the Netherlands and they are still doing a study about in in the hospitals.

Michele

[Guest guest]

Hi Michele,

Where in the Netherlands do you live?

I live in Amsterdam but I'm originally from Los Angeles.

I had my liver transplant because of PBC over 20 years ago when I was

38. I'm now 59. We have two grown daughters and a granddaughter. I'm

pretty active with my family and sports.

I've been on prednisone and Imuran since my transplant.

I wish I knew about AIH but I don't. Thanks to the internet you can

communicate with other people that have AIH. I think there's an AIH

chat through the PBCer's group.

Have you checked them out?

Feel free to contacrt me any time.

Good luck,

>

>

>Hi all,

>My name is Michele, I'm 43 years old, single, no kids, 2 dogs and 2

>cats. I live in the Netherlands, but was born in Brooklyn, NY. A

>part of my family lives in New Jersey, del and Colorado.

>

>2 years ago they discovered I have AIH. I have been coping with the

>decease and trying to except it, but it is hard.

>

>In the beginning I have been on prednison and later on they started

>me on Imuran. It went very good for a while but since last week I

>had to start on Prednison again, for 4 weeks and after that the test

>will show what the next step will be.

>

>I hope I will be able to stop with the prednison, because I feel

>very depressed of it. I rather have more Imuran and no Prednison at

>all, but sometimes you just have to be happy you are still alive.

>

>I hope I can read some more about AIH here, because in the

>Netherlands there is almost nothing to find about it. There aren't a

>lot of people that have AIH in the Netherlands and they are still

>doing a study about in in the hospitals.

>

>Michele

>

>

[Guest guest]

Hi ,

We live about 1 hour apart from each other, I live in Heerhugowaard, near

Alkmaar.

It's nice to read that you have been transplanted such a long time ago and

you are indeed a very active person.

It's really good the hear or read about people that have had it a long time

and can tell you about it.

Thank you for telling me about the PBCer's group. I'll go and check them

out.

Good luck to you too

Michele

-----Oorspronkelijk bericht-----

From:

Sent: Friday, December 31, 2010 3:08 PM

Subject: Re: [ ] introduction

Hi Michele,

Where in the Netherlands do you live?

I live in Amsterdam but I'm originally from Los Angeles.

I had my liver transplant because of PBC over 20 years ago when I was

38. I'm now 59. We have two grown daughters and a granddaughter. I'm

pretty active with my family and sports.

I've been on prednisone and Imuran since my transplant.

I wish I knew about AIH but I don't. Thanks to the internet you can

communicate with other people that have AIH. I think there's an AIH

chat through the PBCer's group.

Have you checked them out?

Feel free to contacrt me any time.

Good luck,

>

>

>Hi all,

>My name is Michele, I'm 43 years old, single, no kids, 2 dogs and 2

>cats. I live in the Netherlands, but was born in Brooklyn, NY. A

>part of my family lives in New Jersey, del and Colorado.

>

>2 years ago they discovered I have AIH. I have been coping with the

>decease and trying to except it, but it is hard.

>

>In the beginning I have been on prednison and later on they started

>me on Imuran. It went very good for a while but since last week I

>had to start on Prednison again, for 4 weeks and after that the test

>will show what the next step will be.

>

>I hope I will be able to stop with the prednison, because I feel

>very depressed of it. I rather have more Imuran and no Prednison at

>all, but sometimes you just have to be happy you are still alive.

>

>I hope I can read some more about AIH here, because in the

>Netherlands there is almost nothing to find about it. There aren't a

>lot of people that have AIH in the Netherlands and they are still

>doing a study about in in the hospitals.

>

>Michele

>

>

[Guest guest]

Hello,

I was accepted to this group about a week ago, and since then I've been reading

posts and the files. I have a 3 y 8 m old son for whom we've been doing

biomedical treatments since November. We will be getting back our DD Hair

Elements test early next week, and I'd like to upload it. I am positive we are

dealing with heavy metal and I'd like to start chelating within the next month

or two, after I buy AC's books.

He was already classified as " ADHD " (using quotes because its such a catchall

term) at the tender age of 2.5 years. I knew there was a problem since he was 18

months, in terms of slow language understanding, hyperactivity, unable to play

appropriately, but very " social " and happy to be with people. Almost manic, and

he came out of the womb that way, he did not regress.

Back in the fall, I hired a " big name " DAN doctor in New York who did lots of

expensive tests (but did not suggest the DD hair elements test) and cost me a

significant amount of money all told. After doing my own learning, I see I can

make better progress on my own with the help of a good listserve like this one.

From our blood test this past fall, we know that our son has high copper (but

also relatively high zinc), is hypoglycemic, very sensitive to milk and casein,

has normal liver function, tested negative for yeast and parasites. He has shown

marked improvement (cognitive, social, communication) this year with the removal

of milk and casin from his diet; I am supplementing with zinc, mag sulfate

cream, taurine, calcium, B complex, Vit C, NN cod liver oil, and Kirkman

Everyday multi. I recently started milk thistle at night. He also gets lots of

therapy in the form of speech, OT, counseling and SEIT (shadow) in his preschool

classroom.

Luckily I wasted money but not too much time. I have been reading all I can, but

I do have some questions that I can't find the answers to in the files.

Determining risk: this will help my husband to get on board with chelation. Is

there a website or group of studies on the safety of DMSA and ALA in children,

specifically using the AC protocol? From what I read, regression if not taken on

time could be an issue. Any other risks, include not tolerating the agents,

being allergic, etc.

ACE - it seems my son may have adrenal issues. From researching ACE it seems to

be made of cow tissue. Does anyone have an issue with this, risks including

using a diseased cow, or a non-organic cow.

Prepping with supplements: I see a list of supplements and amounts I should give

4 X a day in anticipation of chelation. How do I adjust for body weight? He is

29 lbs. How far in advance of chelation should I start giving?

Sorry for all the questions. From my " lurking " I can see this is a group of

intelligent, caring parents. Thanks for your help.

a

DS #1, 3 y 8 m, 29 lb

DS #2, 1 y 11 m, 23 lb

[Guest guest]

Hi a,

Welcome to the group.

Have you used chromium picolinate for the hypoglycemia? I found that

supplement, taken with meals, helped my son a ton at that age. He tended to

crash at about 10am (regardless of what he ate for breakfast) and this was

helpful.

I am impressed with what you have done thus far.

My husband is a skeptical MD. Prior to starting DMSA, he did some pubmed

research (well, the hospital library did it for him). What he found was

research showing the long history of DMSA use for lead toxicity along with

relative safety. It is FDA approved. That should be of some comfort to your

husband. Using DMSA with lower doses/higher frequency would be even safer.

Keeping an every 3-4 hour dosing schedule for 72 hours is the best way to avoid

any negatives. That, plus starting with a low dose (1/4mg per lb per dose) and

working up to the 1/2 mg per lb dose (if it goes well). Adding ALA at some

point to get the mercury out of the brain, too. Same dosing schedule

guidelines.

I am glad you want to start this sooner than later. If I were to get up on my

soapbox, it would be to warn parents/caregivers not to wait until everything is

perfect before they start chelating. Wasted time.

Take care,

Pam

>

> Hello,

>

> I was accepted to this group about a week ago, and since then I've been

reading posts and the files. I have a 3 y 8 m old son for whom we've been doing

biomedical treatments since November. We will be getting back our DD Hair

Elements test early next week, and I'd like to upload it. I am positive we are

dealing with heavy metal and I'd like to start chelating within the next month

or two, after I buy AC's books.

>

> He was already classified as " ADHD " (using quotes because its such a catchall

term) at the tender age of 2.5 years. I knew there was a problem since he was 18

months, in terms of slow language understanding, hyperactivity, unable to play

appropriately, but very " social " and happy to be with people. Almost manic, and

he came out of the womb that way, he did not regress.

>

> Back in the fall, I hired a " big name " DAN doctor in New York who did lots of

expensive tests (but did not suggest the DD hair elements test) and cost me a

significant amount of money all told. After doing my own learning, I see I can

make better progress on my own with the help of a good listserve like this one.

>

> From our blood test this past fall, we know that our son has high copper (but

also relatively high zinc), is hypoglycemic, very sensitive to milk and casein,

has normal liver function, tested negative for yeast and parasites. He has shown

marked improvement (cognitive, social, communication) this year with the removal

of milk and casin from his diet; I am supplementing with zinc, mag sulfate

cream, taurine, calcium, B complex, Vit C, NN cod liver oil, and Kirkman

Everyday multi. I recently started milk thistle at night. He also gets lots of

therapy in the form of speech, OT, counseling and SEIT (shadow) in his preschool

classroom.

>

> Luckily I wasted money but not too much time. I have been reading all I can,

but I do have some questions that I can't find the answers to in the files.

>

> Determining risk: this will help my husband to get on board with chelation. Is

there a website or group of studies on the safety of DMSA and ALA in children,

specifically using the AC protocol? From what I read, regression if not taken on

time could be an issue. Any other risks, include not tolerating the agents,

being allergic, etc.

>

> ACE - it seems my son may have adrenal issues. From researching ACE it seems

to be made of cow tissue. Does anyone have an issue with this, risks including

using a diseased cow, or a non-organic cow.

>

> Prepping with supplements: I see a list of supplements and amounts I should

give 4 X a day in anticipation of chelation. How do I adjust for body weight? He

is 29 lbs. How far in advance of chelation should I start giving?

>

> Sorry for all the questions. From my " lurking " I can see this is a group of

intelligent, caring parents. Thanks for your help.

>

> a

> DS #1, 3 y 8 m, 29 lb

> DS #2, 1 y 11 m, 23 lb

>

[Guest guest]

Cherly,

I think the question I would be asking the new rheumy is will he/she be more

agressive with treatment then the first one. You have had her on the Nsaids too

long and they are not working to take care of this. Before you appointment do

some research on Methotrexate, Enbrel and other meds that are used for JIA. If

you are meeting with an agressive doctor I would expect them to suggest

something along this line. Getting your child out of pain as well as

eliminating the pain, swelling and hot joints should be the goal. As you

research these medications ask questions here from moms of kids that have been

on them to get input. The research of possible side effects can be scary but

the positive notes of how much better you child will be, outweighs all the

negative. My daughter has been on most of the nsaids which on their own never

worked, she is also on plaquinil, methotrexate, enbrel, folic acid, prevacid and

Keppra for her seizures. I hate giving her meds every day but prefer that to the

pain she was in. We are now just after our appointment yesterday, beginning the

process to taper her methotrexate and if that goes well we will get rid of

somethign else. Her newest medication is Enbrel and I feel that it is doing

really well for her. I do not know where you go for a rheumy but you might

mention it here on this list and you can get some good input as to good doctors

in your area. We travel three hours to see our rheumy and it is well worth the

trip. There is a rheumy that comes to a clinic only thirty minutes away but we

prefer the one in Kansas City. Is your rheumy a pediatric rheumy? Good luck and

we will pray for you. Let us know how the next visit goes.

Veri & Jaye 17 poly

Introduction

Hello,

I am new here and already learning through lurking. I am mother to a nearly 13yr

old with what we believe is arthritis. Not completely certain of the typing. She

also has celiac disease (as do her brother and I) and has been gluten free for 7

years now. She does Irish dance and just about 2 years ago, she was having

severe pain in her ankle. We figured perhaps an injury as she was gearing up for

St Pat's day festivities. When I took her to primary care, he told us

differently. Her joint was red, swollen and warm. As was the other side and her

knees, and her hands, and wrists and elbows. We got blood work and the rheum

consult. She is negative for her RA factor and Lupus. She did have high sed

rates showing inflammation. Her initial Lyme test was positive, but the longer

more specific test was completely negative. I have heard this is not uncommon in

RA. In watching her, she also had back pain and in her shoulders -- it is just

that those were not as bad as the other joints. S he was ranking pain 7-8 and

sometimes in tears. Rheum doc was guessing either spondylo or polyarticular

types. Started her on Sulindac. She was on that for several months and seemed

like her pain was getting better. but then her dance instructor keyed me in to

the fact that she could not remember dance steps that she had been doing for

years. I started watching her more closely and it was rather scarey, she was

quite confused. I stopped the sulindac immediately. Back to the Rheum who

decided to just try higher amounts of ibuprofen at the time since other NSAIDS

were more likely to cause symptoms like we saw in the sulindac. She did ok on

that for a while, but then I started to key in that her stomach was beginning to

hurt her and pain on " good " days was still at 3-5 with some warmth to the

joints. Better, but still pain. Still warmth. Still swelling. When we went back

in, she was switched to Celebrex and has made marked improvements. Her pain is

pretty good (though I have a hard time getting out of her a specific number).

Now..... the last month or so, she has been getting really tired and we have

noticed swelling in one leg only. About a half an inch difference from just

above the knee all the way down to the ankle. No noted warmth. but she does have

pain over the shin. I took her to primary care first. He also found a fairly

tender area behind the knee that she did not tell us about. Did a CBC, Sed Rate,

and CK that all came back normal. He is thinking possible shin splints but

cannot really explain the swelling, pain behind the knee or the fatigue. We are

going back to rheum, but her doc passed away in January and so it will be a

first visit with someone new.

A couple of questions for all of you: Could she be having a flare? Without the

warmth? Could the medicine be keeping the warmth at bay, but not working with

the pain or swelling? Could it be a side effect of the medicine? And, is there

anything really important we should be asking the new rheum?

Thanks for the input. I am kind of stumped on this.

Cheryl

[Guest guest]

She can definately have pain without any redness, warmth or even swelling. My

daughter usually presents perfectly normal, including labs, but still has pain

and arthritis on MRI. Before meds occasionally she swelled, had the heat and

redness, rashes and fevers. Seems like this disease presents any way it wants!

A little of this today, we'll go with that tomorrow. I agree, hoping your new

doc will be more aggressive. Sounds like she's been on NSAIDS without complete

relief too long! Hope things are better soon!

Kirsten

mom to , 7, spondy

>

> Hello,

>

> I am new here and already learning through lurking. I am mother to a nearly

13yr old with what we believe is arthritis. Not completely certain of the

typing. She also has celiac disease (as do her brother and I) and has been

gluten free for 7 years now. She does Irish dance and just about 2 years ago,

she was having severe pain in her ankle. We figured perhaps an injury as she was

gearing up for St Pat's day festivities. When I took her to primary care, he

told us differently. Her joint was red, swollen and warm. As was the other side

and her knees, and her hands, and wrists and elbows. We got blood work and the

rheum consult. She is negative for her RA factor and Lupus. She did have high

sed rates showing inflammation. Her initial Lyme test was positive, but the

longer more specific test was completely negative. I have heard this is not

uncommon in RA. In watching her, she also had back pain and in her shoulders --

it is just that those were not as bad as the other joints. She was ranking pain

7-8 and sometimes in tears. Rheum doc was guessing either spondylo or

polyarticular types. Started her on Sulindac. She was on that for several months

and seemed like her pain was getting better. but then her dance instructor keyed

me in to the fact that she could not remember dance steps that she had been

doing for years. I started watching her more closely and it was rather scarey,

she was quite confused. I stopped the sulindac immediately. Back to the Rheum

who decided to just try higher amounts of ibuprofen at the time since other

NSAIDS were more likely to cause symptoms like we saw in the sulindac. She did

ok on that for a while, but then I started to key in that her stomach was

beginning to hurt her and pain on " good " days was still at 3-5 with some warmth

to the joints. Better, but still pain. Still warmth. Still swelling. When we

went back in, she was switched to Celebrex and has made marked improvements. Her

pain is pretty good (though I have a hard time getting out of her a specific

number). Now..... the last month or so, she has been getting really tired and we

have noticed swelling in one leg only. About a half an inch difference from just

above the knee all the way down to the ankle. No noted warmth. but she does have

pain over the shin. I took her to primary care first. He also found a fairly

tender area behind the knee that she did not tell us about. Did a CBC, Sed Rate,

and CK that all came back normal. He is thinking possible shin splints but

cannot really explain the swelling, pain behind the knee or the fatigue. We are

going back to rheum, but her doc passed away in January and so it will be a

first visit with someone new.

>

> A couple of questions for all of you: Could she be having a flare? Without the

warmth? Could the medicine be keeping the warmth at bay, but not working with

the pain or swelling? Could it be a side effect of the medicine? And, is there

anything really important we should be asking the new rheum?

>

> Thanks for the input. I am kind of stumped on this.

> Cheryl

>