New to the Group

[Guest guest]

, I to have had this problem for two years now. I wonder also if I

am ever going to get rid of it. I have tried several things. I have gotten

to the point that I don't think it will ever come back and the first carbo

that I eat or drink, there it is again. It is funny because I feel it

seconds after I eat something I should not like mac and cheese, spagettie,

Myra

new to the group

> From: SGCHILDS@...

>

> hello,

> my name is kristin and i'm happy to have found people to talk to about

this

> miserable candida. i have been aware that candida is my problem for about

a

> year now and have found treatment that i believe is helping me. although

the

> more that i read i am beginning to wonder what really will get rid of all

the

> yeast. it seems that every m.d. and d.o. etc. has his or her own theories

so

> who is right? what author of what book knows the answer? and the doctor

who

> swears he knows the answer won't tell you until you buy his " wonder

> products " . this certainly isn't the way i was going to introduce myself,

> actually i am quite pleased with the results i have experienced so far but

> some days i just feel a little negative. if anyone wants to swap stories

or

> things that are working for you, i'd be glad to share as well. kristin..

>

>

>

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

[Guest guest]

Hi ,

I'd love to hear about what plan you have started. I haven't started any plan

and I am on this list to find out where one begins. I haven't found a Doctor

and am clueless how to find one. Money is also an object. My sister who lives

in England has worked on eliminating candida and loves it. Her and her

husband both are on a plan. I've read a bit about it and know that there is

medicine that can only be gotten with a prescription that really helps. I

think I would only want to start a diet if I had the prescription because

otherwise I will have to have a lot of will power to eliminate the foods that

candida wants. Well tell me what your plan is so far. I'd love to hear about

it.

Cheryl

[Guest guest]

Hi ,

Welcome to the group. You will find a lot of support

in this group. The people are very kind and caring.

The side effects of the prednisone should diminish

once you're on 10mg or less per day. I hope the

treatment works well for you.

Barbara Ann

AIH Transplant Recipient

__________________________________________________

[Guest guest]

Hello Everyone,

My name is Carolyn Rowe. One of your subscribers filled me in on this

site. I'm still trying to learn it and hope this finds it's way to you.

Mine is a long story, as I'm sure all are. I was infected with lyme over

10 years ago while a military flyer for the USAF. Within about 6 days

after the tick was removed I developed a rash that must have measured at

least a foot in diameter around the bite site. Since the extent of my

knowledge of lyme consisted of nothing more than the rash supposedly

looking like a bullseye I didn't get too concerned as my rash was

uniformally red. But within 2 weeks I started getting a malady of

symptoms. Remembering the tick bite and rash I went to the flight

surgeon and brought it to his attention. Naturally it was blown off as

not being possible in Arkansas. Over the next 6 weeks I kept getting

worse and new syptoms were popping up all the time. After much fighting

I finally got them to pull a titer in July (the bite was in May 1989). I

was told it came back negative. I was starting to suffer severe

neurological syptoms, there were days when I couldn't even stand up. The

AF kept sending me from doctor to doctor and, of course, started

questioning my mental status. During this time I was researching lyme,

getting educated, and was sure that this was what was happening to me. I

had so many symptoms I can't even begin to list them all and the docs

said I couldn't have that many symptoms from one thing and thought I was

crazy. I kept pushing the issue to no avail. Approximately 5 months into

my nightmare I saw the titer results in my records and they were

positive, not negative. They had lied to me. They lied because they

didn't believe lyme existed in Arkansas, some didn't believe the disease

existed at all. While at another military hospital about 6 months into

it I had another titer done which also came back positive. I thought,

finally, they're going to treat me for this. They didn't. The doc said

they reran the test and it came back high negative so treatment wasn't

indicated. I had become extremely educated on lyme by this time and

couldn't believe these people and their lack of knowledge. They didn't

even research themselves and blamed my knowledge for all of my symptoms,

even though most were already present before I started my research. I

continued to go down hill and was suffled from one doctor and hospital

to another, kept getting psych evals and I knew I was losing something I

had worked so hard to achieve, my flying career. I was also losing my

health.

For the sake of your eyes I will continue my saga tomorrow. I have also

just gone back on antibiotics for a relapse and am pretty tired.

Prinny328, don't ever lose hope!!! I had to go off of Rocephin for a

reaction but went back on it. As one said, it might not be your magic

bullet. You are not alone!!!!! Hopefully we can finger tap because I

have plenty of fight to spare! Vicki, Dilantin STINKS! I wound up with

lyme seizures and was on that stuff and it just made everything worse. I

don't have nightmares but I was always dizzy and confused. I don't know

if your doctor told you this but it will, in time, make you grow facial

hair and make your voice husky, like a mans. I don't know why you take

it but if tegretol will do the same thing it's a much better way to go!

I'm taking carbatrol right now, it's tegretol in a timed release form so

you only have to take it twice a day.

Anyway, I am so sorry to you all for what you are going through because

I've been there and done that. What an emotional rollercoaster! I've

been on the ride for over 10 years now. We WILL conquer though because

lymies are not weak! I will tap volume 2 tomorrow, until then may you

all find peace.

Carolyn

[Guest guest]

Carolyn,

Geezzz! I new I didn't like Dilantin anyway. And just yesterday I told my

doctor that it didn't seem to help anything and only gave me nightmares.

Anyway he gave me a new one called Neuratin (can't read the prescrip, so I

may not have spelled it right.) Anyway he said it is very similar to

Tegretol. My memory and mind is gone, but I think he said it was for nerve

pain, the burning sensations up and down my legs and arms and feet, that

others spoke about & restless leg syndrome, I never thought it could be

herks. I also read something about the myofascia, its the membrane lining

over the muscles, which would explain why I used to describe this burning

sensation as " my skin hurts " . I knew that was not really the right

explanation, but I knew it wasn't my muscles. So now I'm wondering is it

really nerve damage/pain, or myofascia pain. Well I'll let everyone know if

Neuratin helps this pain, which really isn't very painful, just annoying and

caused fatigue, you know the old feeling that a truck ran over you during

your sleep or attempt at sleep. Thanks for advice... I'm having a good day

today, after about three weeks of bad, so I'm going to try to get outside on

this beautiful Southern land day. Hang in there everyone, like you said

we are fighters!

Vicki

Re: [Lyme-aid] New to the group

>From: Carolyn Rowe <skidrowe@...>

>

>Hello Everyone,

>

>My name is Carolyn Rowe. One of your subscribers filled me in on this

>site. I'm still trying to learn it and hope this finds it's way to you.

>

>Mine is a long story, as I'm sure all are. I was infected with lyme over

>10 years ago while a military flyer for the USAF. Within about 6 days

>after the tick was removed I developed a rash that must have measured at

>least a foot in diameter around the bite site. Since the extent of my

>knowledge of lyme consisted of nothing more than the rash supposedly

>looking like a bullseye I didn't get too concerned as my rash was

>uniformally red. But within 2 weeks I started getting a malady of

>symptoms. Remembering the tick bite and rash I went to the flight

>surgeon and brought it to his attention. Naturally it was blown off as

>not being possible in Arkansas. Over the next 6 weeks I kept getting

>worse and new syptoms were popping up all the time. After much fighting

>I finally got them to pull a titer in July (the bite was in May 1989). I

>was told it came back negative. I was starting to suffer severe

>neurological syptoms, there were days when I couldn't even stand up. The

>AF kept sending me from doctor to doctor and, of course, started

>questioning my mental status. During this time I was researching lyme,

>getting educated, and was sure that this was what was happening to me. I

>had so many symptoms I can't even begin to list them all and the docs

>said I couldn't have that many symptoms from one thing and thought I was

>crazy. I kept pushing the issue to no avail. Approximately 5 months into

>my nightmare I saw the titer results in my records and they were

>positive, not negative. They had lied to me. They lied because they

>didn't believe lyme existed in Arkansas, some didn't believe the disease

>existed at all. While at another military hospital about 6 months into

>it I had another titer done which also came back positive. I thought,

>finally, they're going to treat me for this. They didn't. The doc said

>they reran the test and it came back high negative so treatment wasn't

>indicated. I had become extremely educated on lyme by this time and

>couldn't believe these people and their lack of knowledge. They didn't

>even research themselves and blamed my knowledge for all of my symptoms,

>even though most were already present before I started my research. I

>continued to go down hill and was suffled from one doctor and hospital

>to another, kept getting psych evals and I knew I was losing something I

>had worked so hard to achieve, my flying career. I was also losing my

>health.

>

>For the sake of your eyes I will continue my saga tomorrow. I have also

>just gone back on antibiotics for a relapse and am pretty tired.

>Prinny328, don't ever lose hope!!! I had to go off of Rocephin for a

>reaction but went back on it. As one said, it might not be your magic

>bullet. You are not alone!!!!! Hopefully we can finger tap because I

>have plenty of fight to spare! Vicki, Dilantin STINKS! I wound up with

>lyme seizures and was on that stuff and it just made everything worse. I

>don't have nightmares but I was always dizzy and confused. I don't know

>if your doctor told you this but it will, in time, make you grow facial

>hair and make your voice husky, like a mans. I don't know why you take

>it but if tegretol will do the same thing it's a much better way to go!

>I'm taking carbatrol right now, it's tegretol in a timed release form so

>you only have to take it twice a day.

>

>Anyway, I am so sorry to you all for what you are going through because

>I've been there and done that. What an emotional rollercoaster! I've

>been on the ride for over 10 years now. We WILL conquer though because

>lymies are not weak! I will tap volume 2 tomorrow, until then may you

>all find peace.

>

>Carolyn

>

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

[Guest guest]

In a message dated 9/11/1999 4:10:52 PM Eastern Daylight Time,

ferraroa@... writes:

<< I'm having a good day

today, after about three weeks of bad, so I'm going to try to get outside on

this beautiful Southern land day. Hang in there everyone, like you said

we are fighters!

Vicki >>

Dear Vicki, glad to hear that you are having a good day. How Southern MD are

you? Is your Dr LL? is so, could you e-mail me with his name just in case

I cant find one down here? (VA)

Thanks, Deb

[Guest guest]

Deb,

I'm about as far south in land as you can go, on the western side. Maybe

you have heard of Patuxent River Naval Base, or 's Island. My Doctor

is in Waldorf, MD 301-645-9552. He has patients from VA, Salisbury, MD and

PA. I assume " LL " mean Lyme Literate " ? He specializes in Fibromylagia, but

he was the one to dx me with Lyme and is real open to trying whatever might

work. He also really listens to me and when he is talking about my

treatment, he as if he is discussing options and wants my opinion. However,

he is a little conservative, is against IV antibiotics for me, but he

endorse Dr. Burrascano and asked me to find out if there is righting

campaign on his behalf, and that he would be willing to write a letter too.

So he is not sooooo conservative. He is really wonderful and I feel like he

is my therapy. Good luck to you.

Vicki

Re: [Lyme-aid] New to the group

>From: DJinMECH@...

>

>In a message dated 9/11/1999 4:10:52 PM Eastern Daylight Time,

>ferraroa@... writes:

>

><< I'm having a good day

> today, after about three weeks of bad, so I'm going to try to get outside

on

> this beautiful Southern land day. Hang in there everyone, like you

said

> we are fighters!

> Vicki >>

>Dear Vicki, glad to hear that you are having a good day. How Southern MD

are

>you? Is your Dr LL? is so, could you e-mail me with his name just in

case

>I cant find one down here? (VA)

>Thanks, Deb

>

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

[Guest guest]

Vicki,

Your doctor is a jewel, a fibro doctor who recognizes Lyme, I think you

found one in a million. Good girl! There is a campaign to help Dr

Burrascano, I am sending you via separate email the addresses that he can

write to.

Thanks for sharing, the fact you have such a great doctor has made my day.

Hugs,

Marta

>From: " Vicki & Ferraro (home) " <ferraroa@...>

>

>Deb,

>I'm about as far south in land as you can go, on the western side.

Maybe

>you have heard of Patuxent River Naval Base, or 's Island. My Doctor

>is in Waldorf, MD 301-645-9552. He has patients from VA, Salisbury, MD and

>PA. I assume " LL " mean Lyme Literate " ? He specializes in Fibromylagia, but

>he was the one to dx me with Lyme and is real open to trying whatever might

>work. He also really listens to me and when he is talking about my

>treatment, he as if he is discussing options and wants my opinion. However,

>he is a little conservative, is against IV antibiotics for me, but he

>endorse Dr. Burrascano and asked me to find out if there is righting

>campaign on his behalf, and that he would be willing to write a letter too.

>So he is not sooooo conservative. He is really wonderful and I feel like he

>is my therapy. Good luck to you.

>

>Vicki

>-----Original Message-----

[Guest guest]

Thanks Marta,

I agree he is a jewel, I only hope everyone else can find such a good

doctor. Thanks for the information, I look forward in trying help, I just

need to figure out what to say. Take care

Vicki

Re: [Lyme-aid] New to the group

>From: " J & M McCoy " <mlmccoy@...>

>

>Vicki,

> Your doctor is a jewel, a fibro doctor who recognizes Lyme, I think you

>found one in a million. Good girl! There is a campaign to help Dr

>Burrascano, I am sending you via separate email the addresses that he can

>write to.

>Thanks for sharing, the fact you have such a great doctor has made my day.

>Hugs,

>Marta

>

>

>>From: " Vicki & Ferraro (home) " <ferraroa@...>

>>

>>Deb,

>>I'm about as far south in land as you can go, on the western side.

>Maybe

>>you have heard of Patuxent River Naval Base, or 's Island. My

Doctor

>>is in Waldorf, MD 301-645-9552. He has patients from VA, Salisbury, MD and

>>PA. I assume " LL " mean Lyme Literate " ? He specializes in Fibromylagia, but

>>he was the one to dx me with Lyme and is real open to trying whatever

might

>>work. He also really listens to me and when he is talking about my

>>treatment, he as if he is discussing options and wants my opinion.

However,

>>he is a little conservative, is against IV antibiotics for me, but he

>>endorse Dr. Burrascano and asked me to find out if there is righting

>>campaign on his behalf, and that he would be willing to write a letter

too.

>>So he is not sooooo conservative. He is really wonderful and I feel like

he

>>is my therapy. Good luck to you.

>>

>>Vicki

>>-----Original Message-----

>

>

>

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

[Guest guest]

Dear Vicki, thanks for for the info, i wrote down his name and number. I

have an appt with what I hope is a LLMD on Sept 27, and if he dosent work out

I will surely give your doc a call. I did have my MRI done today, no results

yet, I also had an EKG which did pick up a few PVC's so maybe this might help

my case.

Thanks again,

Deb-VA

[Guest guest]

Hi Vicki,

I am looking to see if I have a sample letter saved, I will post as soon

as I find it.

Hugs,

Marta

>From: " Vicki & Ferraro (home) " <ferraroa@...>

>

>Thanks Marta,

>

>I agree he is a jewel, I only hope everyone else can find such a good

>doctor. Thanks for the information, I look forward in trying help, I just

>need to figure out what to say. Take care

>Vicki

>

[Guest guest]

Good Luck Deb!

Re: [Lyme-aid] New to the group

>From: DJinMECH@...

>

>Dear Vicki, thanks for for the info, i wrote down his name and number. I

>have an appt with what I hope is a LLMD on Sept 27, and if he dosent work

out

>I will surely give your doc a call. I did have my MRI done today, no

results

>yet, I also had an EKG which did pick up a few PVC's so maybe this might

help

>my case.

>Thanks again,

>Deb-VA

>

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

[Guest guest]

Dear Mark,

You've come to the right place. Back 6 years ago when my son, , who is

now 11, was first diagnosed with systemic J.R.A., I didn't have a computer

and this type of information wasn't readily available. This time, (

started his most recent flare-up last week), I've been lucky enough to find

this site. It's so helpful and just comforting to know that there are others

who don't wonder what it is I'm talking about when I talk about 's

illness!

Colleen ('s mom)

[Guest guest]

Welcome to the group, Mark. There are quite a few children on the list that

have systemic JRA, including the originator of this website, Georgina. I

have found this group to be very helpful with questions, and it has help me

to see what the rest of the country is doing with different protocols. Our

daughter, n age11, was diagnosed with systemic JRA last November. It

has been up and down ever since, and we are hoping for remission someday. I

can't imagine having such a young child with this disease when they can't

tell you where it hurts or how they feel. I hope your son is doing well.

New to the group

>Hi my name is Mark and I have a five year old son named who

>was diagnosised with Systemic JRA at 14 mos.

>

>

>

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

>eGroups is MORE than email groups

>Check out our great features like calendars, storage files,

>group polls and more at:

>1/3940/2/_/524922/_/957900626/

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

>

>For links to websites with JRA info visit:

>http://www.geocities.com/Heartland/Village/8414/Links.html

>

[Guest guest]

Thank you for such a warm welcome.

Finding this group is really a blessing. Reading about some of the

success stories and even full remissions as been extremely

encouraging.

I know that it is the desire of everyone in this group's child to

have a complete remission and are full of joy just to see the least

bit improvement in their childs condition.

When first flared we didn't know what was going to be the

outcome. Every break I had at work I would call home to see how he

was doing. My greatest fear was of him dying. I would pray all during

the day and into the evening that he would just live.

I continually question myself. Why my son? Did I cause this somehow?

What can I do to help the doctors?

For over 5 1/2 weeks there was no diagnosis. Only FUO - Fever of

Unknown origin. Test after test after test. It never seemed to end.

was only 14 months old, (the only flesh and blood I knew in

this world)and I'm sure he had more needles poked in him during that

period than I had in the last ten years. My wife and I felt so

helpless. I hope I don't offend anyone but, I am a strong believer in

the power of prayer. Throughout my life it has been all I've had. So,

I called and wrote everyone I knew and asked them to pray for my son.

Within the next week he was diagnosed, prescribed meds and able to

walk and move again. Thank you Dr. Jaya Venakataramen!

But as you probably already know with the good came the bad. The good

news was that he could walk again and he didn't have anymore fevers.

The bad news was that he was taking extremely high dosages of meds,

especially for a 1yr old. He was taking over 30mgs of Prednisone/day

& 20+mgs of Naproxen. One of our closest friends is a physician and

she told us that she couldn't believe how much medicine he was

taking. And she explained to us all the side effects.

Just when we thought the battle was over, Just when we thought we

could claim victory here we were again facing another challenge.

Everything we read and every doctor we talked to told us that JRA

especially Systemic Onset JRA was chronic and long-term and the

chances of a permanent a complete remission were slim to none. They

told me that the earlier the onset the more chronic the condition.

They told me that the best thing for me to do is just accept it and

try to do everything I could just to help accept " his "

condition.

Have you ever recieved something in the mail that had your name on it

and claimed that you only needed to call and accept it, but despite

that you still didn't accept it and threw it away? That is how I felt

about every book and every doctors prognosis. As far as I was

concerned and I still am concerned (eventhough the JRA is currently

active in ) Systemic, Poly, and any other form or type of JRA

did not BELONG to , it was not " his " but, he was suffering

from it and needed to get " Rid " of it.

So, once again my wife and I went to battle, fighting for our son's

health. In the physical all we could do is make sure he took his

prescribed medicine, give him his prescribed physcial therapy take

him to his doctor appointments and feed him properly. But, in the

spiritual we continued to pray day after day, month after month.

Asking and believing for his complete recovery never giving up or

accepting the prognosis given to us.

Then finally, after several months he was completely med free. I was

humbled and grateful. All of his doctors told us that they couldn't

explain it but, that they were happy to see him off of the meds.

Almost three years pasted and didn't have one drop of

medicine. Then, in October 1999 immediately following his 5th

birthday he had another flare up. This time it was different, there

wasn't any rashes or fever but he had severe stomach pain and

swelling in the joints. I thought to myself why? What did or didn't I

do? Why couldn't it be me instead of him? He is completely innocent!

He is suppose to be completely healed!

So, here I am writting, sharing my experience with other parents. Its

been eight months and is still taking meds and we are still

praying.

To me this JRA is like a severe cold that comes and wants to stay.

But, with perseverance and faith it " WILL " go away.

Thank you again and thank you for your time.

Mark Bradford

[Guest guest]

Dear Mark, Like you, we do lots of praying. Our daughter has drastically

improved recently and someone asked who we had praying for her. I had to

respond--everybody we knew and all of their friends. We , as parents, have

to have hope no matter what the prognosis. There have been too many times

that doctors have been wrong. They do not know what causes this disease,

and they do not know what cures the disease, so I figure they have no right

to tell us the future. I believe in my heart that there will be a cure for

this disease in the next decade or so. It is just not that complicated of a

disease, it is just the body attacking itself. This sight it a good way to

give the parents some hope. All of our times are coming to have a remission

for our child. Good luck.

Re: New to the group

>Thank you for such a warm welcome.

>

>Finding this group is really a blessing. Reading about some of the

>success stories and even full remissions as been extremely

>encouraging.

>

>I know that it is the desire of everyone in this group's child to

>have a complete remission and are full of joy just to see the least

>bit improvement in their childs condition.

>

>When first flared we didn't know what was going to be the

>outcome. Every break I had at work I would call home to see how he

>was doing. My greatest fear was of him dying. I would pray all during

>the day and into the evening that he would just live.

>I continually question myself. Why my son? Did I cause this somehow?

>What can I do to help the doctors?

>

>For over 5 1/2 weeks there was no diagnosis. Only FUO - Fever of

>Unknown origin. Test after test after test. It never seemed to end.

> was only 14 months old, (the only flesh and blood I knew in

>this world)and I'm sure he had more needles poked in him during that

>period than I had in the last ten years. My wife and I felt so

>helpless. I hope I don't offend anyone but, I am a strong believer in

>the power of prayer. Throughout my life it has been all I've had. So,

>I called and wrote everyone I knew and asked them to pray for my son.

>Within the next week he was diagnosed, prescribed meds and able to

>walk and move again. Thank you Dr. Jaya Venakataramen!

>

>But as you probably already know with the good came the bad. The good

>news was that he could walk again and he didn't have anymore fevers.

>The bad news was that he was taking extremely high dosages of meds,

>especially for a 1yr old. He was taking over 30mgs of Prednisone/day

> & 20+mgs of Naproxen. One of our closest friends is a physician and

>she told us that she couldn't believe how much medicine he was

>taking. And she explained to us all the side effects.

>

>Just when we thought the battle was over, Just when we thought we

>could claim victory here we were again facing another challenge.

>Everything we read and every doctor we talked to told us that JRA

>especially Systemic Onset JRA was chronic and long-term and the

>chances of a permanent a complete remission were slim to none. They

>told me that the earlier the onset the more chronic the condition.

>They told me that the best thing for me to do is just accept it and

>try to do everything I could just to help accept " his "

>condition.

>

>Have you ever recieved something in the mail that had your name on it

>and claimed that you only needed to call and accept it, but despite

>that you still didn't accept it and threw it away? That is how I felt

>about every book and every doctors prognosis. As far as I was

>concerned and I still am concerned (eventhough the JRA is currently

>active in ) Systemic, Poly, and any other form or type of JRA

>did not BELONG to , it was not " his " but, he was suffering

>from it and needed to get " Rid " of it.

>

>So, once again my wife and I went to battle, fighting for our son's

>health. In the physical all we could do is make sure he took his

>prescribed medicine, give him his prescribed physcial therapy take

>him to his doctor appointments and feed him properly. But, in the

>spiritual we continued to pray day after day, month after month.

>Asking and believing for his complete recovery never giving up or

>accepting the prognosis given to us.

>

>Then finally, after several months he was completely med free. I was

>humbled and grateful. All of his doctors told us that they couldn't

>explain it but, that they were happy to see him off of the meds.

>

>Almost three years pasted and didn't have one drop of

>medicine. Then, in October 1999 immediately following his 5th

>birthday he had another flare up. This time it was different, there

>wasn't any rashes or fever but he had severe stomach pain and

>swelling in the joints. I thought to myself why? What did or didn't I

>do? Why couldn't it be me instead of him? He is completely innocent!

>He is suppose to be completely healed!

>

>So, here I am writting, sharing my experience with other parents. Its

>been eight months and is still taking meds and we are still

>praying.

>

>To me this JRA is like a severe cold that comes and wants to stay.

>But, with perseverance and faith it " WILL " go away.

>

>Thank you again and thank you for your time.

>

>Mark Bradford

>

>

>

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

>Save up to 54% on Quest & Kelty tents, backpacks, sleeping bags and

>outdoor gear. FREE Shipping and a 30 Day Money-Back Guarantee at

>screaminghotdeals.com

>1/4012/2/_/524922/_/957907654/

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

>

>For links to websites with JRA info visit:

>http://www.geocities.com/Heartland/Village/8414/Links.html

>

>

[Guest guest]

Welcome to the group Mark! Teri (mother of Age 2 1/2 with pauci JRA)

[Guest guest]

hi mark

hi colleen

i am Robbin i have a daughter whos now 13 years old and feb 2000 started

haveing problems this is a great group to know about georgina is great with

info

melissa is now walking again yesterday she got a no cavaties at the dentist

we got her fitted for a knee brace which will help alot kids want to be

active

melissa has arthropathy ostoepenia arthralgia and connective tissue

disease

JRA she also has asthma the weather changes as the group has talked about

messes with both on her lololol

i am a mom of 2 1 son 22 yrs old and melissa 13 yrs old married 24 yrs

i live in atlanta ga

glad to meet yall

Robbin

[Guest guest]

Please unsubscribe

Re: New to the group

>

>

> >Thank you for such a warm welcome.

> >

> >Finding this group is really a blessing. Reading about some of the

> >success stories and even full remissions as been extremely

> >encouraging.

> >

> >I know that it is the desire of everyone in this group's child to

> >have a complete remission and are full of joy just to see the least

> >bit improvement in their childs condition.

> >

> >When first flared we didn't know what was going to be the

> >outcome. Every break I had at work I would call home to see how he

> >was doing. My greatest fear was of him dying. I would pray all during

> >the day and into the evening that he would just live.

> >I continually question myself. Why my son? Did I cause this somehow?

> >What can I do to help the doctors?

> >

> >For over 5 1/2 weeks there was no diagnosis. Only FUO - Fever of

> >Unknown origin. Test after test after test. It never seemed to end.

> > was only 14 months old, (the only flesh and blood I knew in

> >this world)and I'm sure he had more needles poked in him during that

> >period than I had in the last ten years. My wife and I felt so

> >helpless. I hope I don't offend anyone but, I am a strong believer in

> >the power of prayer. Throughout my life it has been all I've had. So,

> >I called and wrote everyone I knew and asked them to pray for my son.

> >Within the next week he was diagnosed, prescribed meds and able to

> >walk and move again. Thank you Dr. Jaya Venakataramen!

> >

> >But as you probably already know with the good came the bad. The good

> >news was that he could walk again and he didn't have anymore fevers.

> >The bad news was that he was taking extremely high dosages of meds,

> >especially for a 1yr old. He was taking over 30mgs of Prednisone/day

> > & 20+mgs of Naproxen. One of our closest friends is a physician and

> >she told us that she couldn't believe how much medicine he was

> >taking. And she explained to us all the side effects.

> >

> >Just when we thought the battle was over, Just when we thought we

> >could claim victory here we were again facing another challenge.

> >Everything we read and every doctor we talked to told us that JRA

> >especially Systemic Onset JRA was chronic and long-term and the

> >chances of a permanent a complete remission were slim to none. They

> >told me that the earlier the onset the more chronic the condition.

> >They told me that the best thing for me to do is just accept it and

> >try to do everything I could just to help accept " his "

> >condition.

> >

> >Have you ever recieved something in the mail that had your name on it

> >and claimed that you only needed to call and accept it, but despite

> >that you still didn't accept it and threw it away? That is how I felt

> >about every book and every doctors prognosis. As far as I was

> >concerned and I still am concerned (eventhough the JRA is currently

> >active in ) Systemic, Poly, and any other form or type of JRA

> >did not BELONG to , it was not " his " but, he was suffering

> >from it and needed to get " Rid " of it.

> >

> >So, once again my wife and I went to battle, fighting for our son's

> >health. In the physical all we could do is make sure he took his

> >prescribed medicine, give him his prescribed physcial therapy take

> >him to his doctor appointments and feed him properly. But, in the

> >spiritual we continued to pray day after day, month after month.

> >Asking and believing for his complete recovery never giving up or

> >accepting the prognosis given to us.

> >

> >Then finally, after several months he was completely med free. I was

> >humbled and grateful. All of his doctors told us that they couldn't

> >explain it but, that they were happy to see him off of the meds.

> >

> >Almost three years pasted and didn't have one drop of

> >medicine. Then, in October 1999 immediately following his 5th

> >birthday he had another flare up. This time it was different, there

> >wasn't any rashes or fever but he had severe stomach pain and

> >swelling in the joints. I thought to myself why? What did or didn't I

> >do? Why couldn't it be me instead of him? He is completely innocent!

> >He is suppose to be completely healed!

> >

> >So, here I am writting, sharing my experience with other parents. Its

> >been eight months and is still taking meds and we are still

> >praying.

> >

> >To me this JRA is like a severe cold that comes and wants to stay.

> >But, with perseverance and faith it " WILL " go away.

> >

> >Thank you again and thank you for your time.

> >

> >Mark Bradford

> >

> >

> >

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

> >Save up to 54% on Quest & Kelty tents, backpacks, sleeping bags and

> >outdoor gear. FREE Shipping and a 30 Day Money-Back Guarantee at

> >screaminghotdeals.com

> >1/4012/2/_/524922/_/957907654/

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

> >

> >For links to websites with JRA info visit:

> >http://www.geocities.com/Heartland/Village/8414/Links.html

> >

> >

>

>

>

> For links to websites with JRA info visit:

> http://www.geocities.com/Heartland/Village/8414/Links.html

>

>

[Guest guest]

Mark,

Glad that you found this site. I know it has been a blessing to me. And a

wealth of information!!! I think at some point we have all asked why??? Why

my child?? How could this happen. I remeber when my daughter was younger and

was in intensive care(something unrelated to JRA she's only been dx with JRA

for a year) and I thought why God ...why this innocent child then I looked

around the room and saw all the other children many who would never leave

that place & I said THANK YOU GOD! Everyday we have with our children is a

GIFT!!! Just hang in theer Mark I firmly & personally believe & have seen the

power of prayer. I pray every night for a cure for all the children that

suffer from this disease!! to get a little personal here if I may I hope I'm

not going to offend or be presumptous but I'd like to give you a bible verse

that has helped me. Romans 8:28 All things work together for good to them

that love God & are called according to his purpose. We may never know the

why.... I have chosen to live for today and tomorrow... Kris

[Guest guest]

Hello Mark,

I am so glad that you found our group. Welcome. And thank you for

sharing your son's story. I understand. I think that all of us here have

struggled with the same sorts of issues that you and your family are

going through. It's not easy. And no-one has definitive answers. We

don't know for sure what triggers this illness and we don't know for

sure why it tends to be more or less active during different periods.

When my son Josh started recovering from his first flare we were so

excited to finally put this all behind us and move on. Lo and behold,

the disease became active again. Forcing us to rethink and restructure.

Many people seem to take their children's health for granted. I think I

used to be one of them. When you give birth to a healthy, perfect child

all is well with the world. My son didn't get JRA until he was 6 years

old. We never expected anything remotely like this would happen. Totally

unprepared and devastated. But they say that everything happens for a

reason, even if we don't quite understand the reasons behind it all. And

I think, in hindsight, that we have learned some very valuable lessons

from the experiences we've endured because of this illness. All of us.

And we've met some very wonderful people who probably would never have

touched our lives, if it hadn't been for JRA.

I know this may not make it any easier to deal with but you are doing

exactly what needs to be done. You're doing the best you can with the

resources that are currently available. Your son is surrounded by

concerned and loving family and friends and he has good doctors who will

see to it that he gets the best available treatment and care. Despite

these periods of active arthritis he will still be able to thrive.

Remember to focus on his positive traits and skills. Sometimes when

there's a health crisis the arthritis takes center stage ... but the

arthritis is just one small part of the overall picture of .

Hopefully this latest flare will be managed and controlled soon and

will have improvements like he did the last time, maybe lasting

even longer than before.

Aloha,

Georgina

Mark Bradford wrote:

> Thank you for such a warm welcome.

> Finding this group is really a blessing. Reading about some of the

> success stories and even full remissions as been extremely

> encouraging.

>

> I know that it is the desire of everyone in this group's child to

> have a complete remission and are full of joy just to see the least

> bit improvement in their childs condition.

>

> When first flared we didn't know what was going to be the

> outcome. Every break I had at work I would call home to see how he

> was doing. My greatest fear was of him dying. I would pray all during

> the day and into the evening that he would just live.

> I continually question myself. Why my son? Did I cause this somehow?

> What can I do to help the doctors?

>

> For over 5 1/2 weeks there was no diagnosis. Only FUO - Fever of

> Unknown origin. Test after test after test. It never seemed to end.

> was only 14 months old, (the only flesh and blood I knew in

> this world)and I'm sure he had more needles poked in him during that

> period than I had in the last ten years. My wife and I felt so

> helpless. I hope I don't offend anyone but, I am a strong believer in

> the power of prayer. Throughout my life it has been all I've had. So,

> I called and wrote everyone I knew and asked them to pray for my son.

> Within the next week he was diagnosed, prescribed meds and able to

> walk and move again. Thank you Dr. Jaya Venakataramen!

>

> But as you probably already know with the good came the bad. The good

> news was that he could walk again and he didn't have anymore fevers.

> The bad news was that he was taking extremely high dosages of meds,

> especially for a 1yr old. He was taking over 30mgs of Prednisone/day

> & 20+mgs of Naproxen. One of our closest friends is a physician and

> she told us that she couldn't believe how much medicine he was

> taking. And she explained to us all the side effects.

>

> Just when we thought the battle was over, Just when we thought we

> could claim victory here we were again facing another challenge.

> Everything we read and every doctor we talked to told us that JRA

> especially Systemic Onset JRA was chronic and long-term and the

> chances of a permanent a complete remission were slim to none. They

> told me that the earlier the onset the more chronic the condition.

> They told me that the best thing for me to do is just accept it and

> try to do everything I could just to help accept " his "

> condition.

>

> Have you ever recieved something in the mail that had your name on it

> and claimed that you only needed to call and accept it, but despite

> that you still didn't accept it and threw it away? That is how I felt

> about every book and every doctors prognosis. As far as I was

> concerned and I still am concerned (eventhough the JRA is currently

> active in ) Systemic, Poly, and any other form or type of JRA

> did not BELONG to , it was not " his " but, he was suffering

> from it and needed to get " Rid " of it.

>

> So, once again my wife and I went to battle, fighting for our son's

> health. In the physical all we could do is make sure he took his

> prescribed medicine, give him his prescribed physcial therapy take

> him to his doctor appointments and feed him properly. But, in the

> spiritual we continued to pray day after day, month after month.

> Asking and believing for his complete recovery never giving up or

> accepting the prognosis given to us.

>

> Then finally, after several months he was completely med free. I was

> humbled and grateful. All of his doctors told us that they couldn't

> explain it but, that they were happy to see him off of the meds.

>

> Almost three years pasted and didn't have one drop of

> medicine. Then, in October 1999 immediately following his 5th

> birthday he had another flare up. This time it was different, there

> wasn't any rashes or fever but he had severe stomach pain and

> swelling in the joints. I thought to myself why? What did or didn't I

> do? Why couldn't it be me instead of him? He is completely innocent!

> He is suppose to be completely healed!

>

> So, here I am writting, sharing my experience with other parents. Its

> been eight months and is still taking meds and we are still

> praying.

>

> To me this JRA is like a severe cold that comes and wants to stay.

> But, with perseverance and faith it " WILL " go away.

>

> Thank you again and thank you for your time.

>

> Mark Bradford

[Guest guest]

In a message dated 12/22/00 12:46:03 AM Eastern Standard Time,

laharvey1@... writes:

<< I am 36 years old and have been suffering from candida for about

three years now. I have had numerous infections, hives, sinus

problems, sore throats, memory loss etc...I have been treating the

problem with nystatin, acidophilus, diflucan. I have been on the

diet most of the three years. If I slip in the least I immediately

have the problem again. Will my immune system ever be the same? I

just found this today. I hope to learn more about this from you

guys. If you have any suggestions, I would love to hear them.

LAH

>>

Hi I just joined this week too.

Do you have silver fillings? Be sure to read the archive messages .

Nastasya

[Guest guest]

Hi LAH. What are you taking for your inmune system?. Greetings.

Claudio

From: laharvey1@...

Reply-candidiasisegroups

candidiasisegroups

Subject: New to the group

Date: Fri, 22 Dec 2000 05:45:10 -0000

Hello everyone,

I am 36 years old and have been suffering from candida for about

three years now. I have had numerous infections, hives, sinus

problems, sore throats, memory loss etc...I have been treating the

problem with nystatin, acidophilus, diflucan. I have been on the

diet most of the three years. If I slip in the least I immediately

have the problem again. Will my immune system ever be the same? I

just found this today. I hope to learn more about this from you

guys. If you have any suggestions, I would love to hear them.

LAH

_________________________________________________________________________

Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com.

[Guest guest]

> In a message dated 12/22/00 12:46:03 AM Eastern Standard Time,

> laharvey1@h... writes:

>

> << I am 36 years old and have been suffering from candida for about

> three years now. I have had numerous infections, hives, sinus

> problems, sore throats, memory loss etc...I have been treating the

> problem with nystatin, acidophilus, diflucan. I have been on the

> diet most of the three years. If I slip in the least I

immediately

> have the problem again. Will my immune system ever be the same?

I

> just found this today. I hope to learn more about this from you

> guys. If you have any suggestions, I would love to hear them.

>

> LAH

> >>

> Hi I just joined this week too.

> Do you have silver fillings? Be sure to read the archive messages .

>

> Nastasya

Hi Yes I do have silver fillings. I read some of the messages. Very

interesting. I have never heard of the silver fillings causing this

problem. I think my started with steroid shots for sinus infections

with antibiotics at the same time.

Lori

[Guest guest]

In a message dated 12/23/00 3:23:25 PM Eastern Standard Time,

laharvey1@... writes:

<< Hi Yes I do have silver fillings. I read some of the messages. Very

interesting. I have never heard of the silver fillings causing this

problem. I think my started with steroid shots for sinus infections

with antibiotics at the same time.

Lori

>>

Silver fillings all leak mercury, and mercury and candida make each other

worse.

I would definately get to a wholistic dentist and get them replaced. AFTER (I

can't emphasize that enough) a dental materials compatibility test. You

never know what else you can be allergic too, there are a few different kinds

of composites. Never go to a dentist that doesn't expect you to get a

compatibility test.

When you have teeth problems it directly effects the sinuses and who wants

that crap so close to ones brain?

If you were to have a kidney transplant, you would be tested for

compatibility, same should go for teeth. Moreso since it is close to the

brain.

Nastasya