question

November 7, 2001

's doctors have told me that his " immune system is full

> of holes--it picks and chooses what will work and what won't work with no

> real pattern to it " . Some of his antibodies work, others don't--both with

> polysaccharide and proteins. There seems to be no rhyme or reason to how

> his sub-class numbers come out--sometimes it's low in 1 and 4, sometimes

> it's 1 and 3, and the last time it was 1 and 2. Same with his IgG's and

> IgM's, These numbers have a large fluctuation to them--except the IgG's

> while on IVIG.

>

> Just my .02.

>

> -mom to , 8, dysgammalgobulinemia, etc; ,10; ,3.

>

,

I am considering sending your e-mail on to our ped. The " hole in the immune

system " theory seems to sound exactly like Autumn. She'll mount partial

responses with both b & t cell tests; her IgG #'s fluctuate, especially

between subclasses 1,2, & 4; she's sick all the time, but not always for the

same reason. In this respect, she sounds just like . The only

difference is that Autumn is not considered an IVIG candidate. Do your docs

have any research (other than anecdotes) to back up their theory?

Ray, mother to Tabitha (age 6), Autumn, age 3 (IgG Def., asthma,

chronic sinusitis, and allergies), and Duncan Avery, 5 months

November 11, 2001

Hi Eleanor, sorry our chat didn't work out - maybe next time.

Ma was thought to have RA for a long while before the onset of stills. She was

also tested for Lupus in the hospital as one of the first batches of tests

before the dx of stills. This seems to be one of the first tests you are tested

for before we come to the outcome of stills. I guess they are similar in alot of

ways. The docs still treated her the same after the dx with stills - with high

doses of entrophen.

Hope this helps.

Take Good Care

Sheri

Question

As you guys know, I'm very new to this illness so I still have so many

questions. Have any of you tested positive for lupus or rheumatoid arthrits

after being diagnosed with Stills? My rheumy is going to monitor me for this

because he said about 50% of the time this can turn either. Have you heard

the same?

Thanks,

Eleanor

November 11, 2001

Eleanor ;

I to have been tested a few times for both and always they come back neg. I

two have been told that it is stills for life but that will not stop you

from posablely getting one or the other not as part or turning in to but if

you are unlucky you could possibly get them as still's with also _______

________ ect as most of us also are fiber suffers also and we say we have

still but some will still call it rheumatoid arthrightes which I guess is

right and wrong but like most of us you are most likely not normal as that

is what makes us normal and by the way welcome and please ask as the only

dumb question is the one you do not ask as if you knew it you would not ask

in the first place right and that is what we all are here for to help each

other out as some times we are the only one who seam to understand how this

thing effects you and your life and or how or other halves change also

because of there love and helplessness for us

pain free and if not take some pills and try to forget it

Marty G.

November 12, 2001

Hi - I've had Still's for 19 years and have never heard that before. My

doctor is a real specialist in Lupus, and he never said anything. He did do a

blood test for lupus recently, and when I asked him about it, he said he was

not looking for Lupus, but the test was one that was done as part of a group

of tests he had asked for.

Personally, I think Still's is its own disease and doesn't turn into

anything. With our symptoms, they usually think of lupus as first, and then

rule it out, where it stays.

marcia

November 12, 2001

Hi - I've had Still's for 19 years and have never heard that before. My

doctor is a real specialist in Lupus, and he never said anything. He did do a

blood test for lupus recently, and when I asked him about it, he said he was

not looking for Lupus, but the test was one that was done as part of a group

of tests he had asked for.

Personally, I think Still's is its own disease and doesn't turn into

anything. With our symptoms, they usually think of lupus as first, and then

rule it out, where it stays.

marcia

November 12, 2001

Hi - I've had Still's for 19 years and have never heard that before. My

doctor is a real specialist in Lupus, and he never said anything. He did do a

blood test for lupus recently, and when I asked him about it, he said he was

not looking for Lupus, but the test was one that was done as part of a group

of tests he had asked for.

Personally, I think Still's is its own disease and doesn't turn into

anything. With our symptoms, they usually think of lupus as first, and then

rule it out, where it stays.

marcia

November 12, 2001

Hi Eleanor, I've read and heard that very thing...even my Rheumy said something

about how it could later turn into Lupus...but at the time I didn't give it much

thought. I wish I would have asked more questions about it. I see Dr. Cush

again in March and I think that's one of the questions I'm going to ask him

about. I'll let everyone know what he has to say on the topic. Sorry I

couldn't be more help.

Love, Kim

Jen & Doug Pickard wrote: Hi Eleanor, I have been tested

for both lupus and RA and both results have came back negative. I haven't heard

that once you had Stills it could turn into lupus or RA. My understanding was

once you had been diagnosed with Stills, you were stuck with it . I could be

wrong though! Don't worry about asking questions - I enjoy reading them and

learning from all the responses - that's what the sight is for. I'm fairly new

to Stills as well and there seems to be so much to learn about it!

Jen

Question

As you guys know, I'm very new to this illness so I still have so many

questions. Have any of you tested positive for lupus or rheumatoid arthrits

after being diagnosed with Stills? My rheumy is going to monitor me for this

because he said about 50% of the time this can turn either. Have you heard

the same?

Thanks,

Eleanor

Visit the Still's Disease Message Board

http://disc.server.com/Indices/148599.html

November 12, 2001

Hi Eleanor, I've read and heard that very thing...even my Rheumy said something

about how it could later turn into Lupus...but at the time I didn't give it much

thought. I wish I would have asked more questions about it. I see Dr. Cush

again in March and I think that's one of the questions I'm going to ask him

about. I'll let everyone know what he has to say on the topic. Sorry I

couldn't be more help.

Love, Kim

Jen & Doug Pickard wrote: Hi Eleanor, I have been tested

for both lupus and RA and both results have came back negative. I haven't heard

that once you had Stills it could turn into lupus or RA. My understanding was

once you had been diagnosed with Stills, you were stuck with it . I could be

wrong though! Don't worry about asking questions - I enjoy reading them and

learning from all the responses - that's what the sight is for. I'm fairly new

to Stills as well and there seems to be so much to learn about it!

Jen

Question

As you guys know, I'm very new to this illness so I still have so many

questions. Have any of you tested positive for lupus or rheumatoid arthrits

after being diagnosed with Stills? My rheumy is going to monitor me for this

because he said about 50% of the time this can turn either. Have you heard

the same?

Thanks,

Eleanor

Visit the Still's Disease Message Board

http://disc.server.com/Indices/148599.html

November 12, 2001

Hi Eleanor, I've read and heard that very thing...even my Rheumy said something

about how it could later turn into Lupus...but at the time I didn't give it much

thought. I wish I would have asked more questions about it. I see Dr. Cush

again in March and I think that's one of the questions I'm going to ask him

about. I'll let everyone know what he has to say on the topic. Sorry I

couldn't be more help.

Love, Kim

Jen & Doug Pickard wrote: Hi Eleanor, I have been tested

for both lupus and RA and both results have came back negative. I haven't heard

that once you had Stills it could turn into lupus or RA. My understanding was

once you had been diagnosed with Stills, you were stuck with it . I could be

wrong though! Don't worry about asking questions - I enjoy reading them and

learning from all the responses - that's what the sight is for. I'm fairly new

to Stills as well and there seems to be so much to learn about it!

Jen

Question

As you guys know, I'm very new to this illness so I still have so many

questions. Have any of you tested positive for lupus or rheumatoid arthrits

after being diagnosed with Stills? My rheumy is going to monitor me for this

because he said about 50% of the time this can turn either. Have you heard

the same?

Thanks,

Eleanor

Visit the Still's Disease Message Board

http://disc.server.com/Indices/148599.html

November 19, 2001

Hi Patti.

My sed rate is normal. That's why I don''t understand the low-grade. Oh well.

I'll have to give it some time.

Eleanor

December 9, 2001

we sure did but of all the fun places it was were you do not want it and that is

were the legs meet the trunk not a good place to itch when you are out in public

but that's the way it went the rumy gave a prescription for some cream and it

cleared right up but now two months later I think it's trying to come back and

wouldn't you know it just as the parties start o well good luck and get it taken

Marty G.

question

Hi Gang.

Could you please tell me if any of you who have been on prednisone have

experienced either a fungal rash or some form of erythema. My doc says that

pred lowers your immune system so it is sometimes common to get an unexpected

fungal infection. It still doesn't make sense to me though how I could have

gotten a ring -like type of rash on my ankle of all places. Anyway... I'm

using a topical anti-fungal cream, and it's not doing much good. I'm thinking

of going to the dermatologist to make sure it isn't erythema but wanted to

see if any of you had any similar experiences.

Thanks,

Eleanor

Visit the Still's Disease Message Board

http://disc.server.com/Indices/148599.html

December 9, 2001

we sure did but of all the fun places it was were you do not want it and that is

were the legs meet the trunk not a good place to itch when you are out in public

but that's the way it went the rumy gave a prescription for some cream and it

cleared right up but now two months later I think it's trying to come back and

wouldn't you know it just as the parties start o well good luck and get it taken

Marty G.

question

Hi Gang.

Could you please tell me if any of you who have been on prednisone have

experienced either a fungal rash or some form of erythema. My doc says that

pred lowers your immune system so it is sometimes common to get an unexpected

fungal infection. It still doesn't make sense to me though how I could have

gotten a ring -like type of rash on my ankle of all places. Anyway... I'm

using a topical anti-fungal cream, and it's not doing much good. I'm thinking

of going to the dermatologist to make sure it isn't erythema but wanted to

see if any of you had any similar experiences.

Thanks,

Eleanor

Visit the Still's Disease Message Board

http://disc.server.com/Indices/148599.html

December 9, 2001

we sure did but of all the fun places it was were you do not want it and that is

were the legs meet the trunk not a good place to itch when you are out in public

but that's the way it went the rumy gave a prescription for some cream and it

cleared right up but now two months later I think it's trying to come back and

wouldn't you know it just as the parties start o well good luck and get it taken

Marty G.

question

Hi Gang.

Could you please tell me if any of you who have been on prednisone have

experienced either a fungal rash or some form of erythema. My doc says that

pred lowers your immune system so it is sometimes common to get an unexpected

fungal infection. It still doesn't make sense to me though how I could have

gotten a ring -like type of rash on my ankle of all places. Anyway... I'm

using a topical anti-fungal cream, and it's not doing much good. I'm thinking

of going to the dermatologist to make sure it isn't erythema but wanted to

see if any of you had any similar experiences.

Thanks,

Eleanor

Visit the Still's Disease Message Board

http://disc.server.com/Indices/148599.html

December 28, 2001

Hi Eleanor:

Just wanted to let you know that Dr. Reginato was my Daughters

Doctor and he is one of the best at treating and diagnosing Stills. He is a good

man but he travels a lot and is always gone. He is very knowledgeable with

Stills so believe what he says. Take care now.

Love Y'as,

Bob

Question

Hi Gang...

I just got back from going to another rheumatologist, (Dr. Reginatto in

Cherry Hill, NJ).

He said it's quite possible that if I don't get another flare after my

initial onset that what I have wasn't Stills but a viral infection of some

type. He said this because my arthritic symptoms were " migratory " , by

ferritin level was high, but not as high as some people with Stills and I

didn't have leucocytosis ( a high white blood cell count).

He says if I get another flare after the inital onset, then it was probably

Stills.

Can anyone share any insight on this? Does this make sense?

Thanks,

Eleanor

December 29, 2001

Eleneor

When my disease started it started with extreme fatigue and sore throats

flu like symptoms and minor swelling in the fingers. i was under stress and

they said it was combo flu and stress and i was retaining water. and i

gradually got worse more sore throats,more tired and the swelling started

going to other joints to at one point my hands and fingers were so swollen i

couldnt use them and then my knees became swollen and the weight loss so just

because your not in a severe flare doesnt mean it fcant get worse i think it

took about 2years for me to get to my worsed and then after dx and trial and

error on meds iam back to halfway normal or should say i was untill recently

but i have been very sick latley and they domnt know if its stills or

something else.

goodluck

connie

December 30, 2001

Hi .

I found your response VERY interesting. My regular rheumy is Dr. Gabel in

Hazlet, NJ. I am his only Stills patient, but he was able to diagnose me in

the hospital rather quickly. I went to Dr. Reginatto because he came

recommended by the our support group. He has seen 35 Stills patients in

total.

I hope to never get a relapse again. But it was interesting to hear that if I

don't get one again, how he felt it was then probably something viral. I

don't know.

I am very interested in hearing about the alternative approach. I'll look

into the book you recommended. I went to a DO while I first had symptoms of

the illness who did a hair analysis and believes that the reason I may be

having this problem is because I have a high level of mercury and lead in my

body. I never pursued doing anything after hearing that, but your response

about " arsenic poisoning " makes me wonder if there is any validity to what he

was saying.

Anyway... Thanks for your message.

Eleanor

December 30, 2001

Hi .

I found your response VERY interesting. My regular rheumy is Dr. Gabel in

Hazlet, NJ. I am his only Stills patient, but he was able to diagnose me in

the hospital rather quickly. I went to Dr. Reginatto because he came

recommended by the our support group. He has seen 35 Stills patients in

total.

I hope to never get a relapse again. But it was interesting to hear that if I

don't get one again, how he felt it was then probably something viral. I

don't know.

I am very interested in hearing about the alternative approach. I'll look

into the book you recommended. I went to a DO while I first had symptoms of

the illness who did a hair analysis and believes that the reason I may be

having this problem is because I have a high level of mercury and lead in my

body. I never pursued doing anything after hearing that, but your response

about " arsenic poisoning " makes me wonder if there is any validity to what he

was saying.

Anyway... Thanks for your message.

Eleanor

December 30, 2001

Hi Eleanor,

Who is your regular Rheumy? I was going to Dr Mermelstein in Chesnut Hill,

Pa. Almost went to Reginatto for a second opinion, but was so happy with

Mermelstein, I chose not to. I have been singing the praises of a homeopath

whom I have been dealing with for the past 8 months. She diagnosed me, put

me on a vitamin and homeopathic remedy regime and SUGGESTED that I change my

diet. After following her direction I ceased taking ALL medications

(started with 60mg pred per day, later 15mg of Methotrexate/week), ONE YEAR

ahead of my Rheumys schedule! (according to my Rheumy).

She also felt that I was misdiagnosed even though I had the rash, 106 degree

fevers daily, severe muscle pain, night sweats, and ferritin level of

135,000. She believed I had arsenic poisoning(from sanding an old mantle

piece). I could not verify this analysis, but I can attest to the fact that

while following my homeopaths regime I not only have not had symptoms af

" stills " but I have NEVER felt better in all my life. The diagnoses for

stills is so general that anything that violently traumatizes the immune

system will result in " stills " symptoms. Causes can be many in nature. I

have been monitoring this group since I got sick and used to post more that

I do now. There is no denying the severity of the symptoms, and the pain

and loss of " quality of life " . I do however feel that a change in attitude

toward modern medicine is essential in order to " beat " the symptoms that

occur.

How many people on this group are willing to do whatever it takes to beat

this disease, including opening their minds to alternative treatments ?

Treatments that do not do more harm to the body and only mask the symptoms,

but attack the root cause of the problem and strengthens the body?

There is a book called VIBRATIONAL MEDICINE by Dr. Gerber, that I

highly recommend. There is a homeopath that I also highly recommend whos

number I will give out upon personal request. I have nothing to gain

financially from the sale of this book or recommending this homeopath(who

saved my life). What I do have to gain is the knowledge that by buying the

book or seeing my homeopath, people will improve the quality of their life,

and loosen the painful grip of the symptoms that exist. I will not offer

myself to comiserate in the the misery of this disease. It seems to me that

so many here are stuck in believing that there is no way to recouperate, and

that thereis no hope. I do not believe this. Without trying to hurt anyones

feeling , I think that where it is comforting to find other people that are

going through the same symptoms, when I first was diagnosed, and began to

read this group, it was depressing to me that the people here were lacking

hope and I found myself not wanting to read the posts because I was starting

to beleive that I would never recover myself! Refusing to beleive this was

one of the reasons that I am in perfect health today.

I can only offer my knowledge to people of one way to possibly beat what we

all call " stills " . I have offered this in the past , and I dont beleive in

answering each post with a similar post " beating a dead horse " . But I will

make this final attempt to offer information to those interested in getting

better. I am not going to get into an argument with people about the

validity of what I know to be true, and I only have the best intentions. To

those interested, e-mail me.

God Bless ALL,

Yannessa

Question

> Hi Gang...

> I just got back from going to another rheumatologist, (Dr. Reginatto in

> Cherry Hill, NJ).

> He said it's quite possible that if I don't get another flare after my

> initial onset that what I have wasn't Stills but a viral infection of some

> type. He said this because my arthritic symptoms were " migratory " , by

> ferritin level was high, but not as high as some people with Stills and I

> didn't have leucocytosis ( a high white blood cell count).

> He says if I get another flare after the inital onset, then it was

probably

> Stills.

> Can anyone share any insight on this? Does this make sense?

>

> Thanks,

> Eleanor

>

> Visit the Still's Disease Message Board

> http://disc.server.com/Indices/148599.html

>

December 30, 2001