Hello

[Guest guest]

Great to hear from you !!!

You keep keep'n at it buddy. It does get more awesome as you progress. My

first three weeks of C1 were definitely the hardest. By the time week four

rolled by I was starting to feel more at ease with working out. My resistance

to

the new lifestyle started to melt away and my love affair with exercise began.

I started seeing real results about week six. I'd have to go back through

the archives to see when that was exactly. But it was almost as if my body

metamorphised over night. It was very exciting.

Glad you are keeping us posted. Let us know about week four!

Kelley

C6W12D3

[Guest guest]

Hey there ! Thanks for checking in. It sounds like you are

maintaining the principles of BFL eating the best you can in your

limited circumstances. I am amazed that you are able to follow it

as closely as you are, so give yourself a pat on the back!

Also, don't feel frustrated if you are not seeing spectacular

results at this point, that's not uncommon at all. Lots of people

see very small results for the first few weeks (or even the 1st 6

weeks!) and then all of a sudden things really start rattlin' and

rollin'. Keep in mind where you *might* have been at this point if

you *hadn't* started BFL almost 3 weeks ago. Would you be leaner or

larger? Would you be feeling those muscles working and growing, or

would you be feeling flabbier? Would your nutrition have been

fueling your body and making you feel healthier, or would you have

been feeling tired and draggy from poor eating habits? There are

lots of results that go beyond the scale and the tape measure.

You are doing great. Keep up the good work, and check in as often

as you can!

Jen B.

> Just saying hello from out here in the desert. My body for life

> program is going real good C1W3D16.Still waiting for the fat to

drop

> and the muscles to grow. Working out still in the morning at

4:30am,

> but it's easier now that I'm getting more entergic about the whole

> program. Read some thing on another site that knocks this program,

> and we have an nutritionist from the Army and she is an Atkins

> person. Used her when I wanted an acurate measurement of my body.

> The food program for BLF is alittle difficult to do here but I

feel

> still posible. I eat alot of protien bars and drink pro shakes 3X

> aday. My solid food consist of Tuna or chicken, fruit,and

> vegatables. But it sure would be easier to make my own, maybe when

I

> get home for good. Well you all take care and may your program be

> grand.

[Guest guest]

In a message dated 4/26/2004 12:06:57 PM Eastern Standard Time,

tluna@... writes:

Kelley---wow! I think you are a natural runner! I bet you'll become

addicted.

OK-100 more emails to go...

Terri

Too late! I already am. I love running so much it is unbelieveable. :-D

Kelley

[Guest guest]

Lyn

I'm sorry you had to find us under the circumstances but glad you did. This

is the place you will get many answers to your questions. There are a lot of

people going thru what you are right now and they will be able to give you

ideas and suggestions on how to handle your MIL.

This is also the place to vent when things get to be too much. We yell, cry,

laugh (that's right I said laugh), and share info with each other.

Lewy Body reacts differently in many people. There are many links on the

main page that will educate you about Lewy Body. It will also inform you about

what needs to be done as far as getting things in order financially, and

medically wise. Do you have POA, does she have a living will to dictate her

wishes? Unfortunately this desease has only one outcome at this time.

What you discribed does sound like Lewy Body. I'm sorry.

Keep reading everything you can about this desease so you can be better

prepared on how to cope and handle your MIL.

Cyber hugs from Florida

Jacqui

[Guest guest]

Hello back at you Lyn. You've found the right place -- the place noone

wants to be, yet grateful for it anyway... From what you wrote it

sounds like LBD -- what medications is your MIL on? What concerns me is

that her GP says that she has schizophrenia + parkinsons -- and one of

the medications used for schizophrenia is Risperidol. My mother did

worse after taking that medication and after just 3 weeks went from

being self-sufficient to needing 24/7 nursing home care. 50% of those

with LBD suffer from extreme sensitivity to anti-psychotics so be

careful with the meds. The best advice: go low, go slow. Post your

questions and we're here for you. And be sure to read the links

section -- tons of useful info:

http://health.groups.yahoo.com/group/LBDcaregivers/links

[Guest guest]

Lyn,

Our LBD loved ones, frequently know us to the end.

Part of the confusion of diagnosis is that LBD was most often diagnosed as PD.

It used to be under the umbrella name of Parkinson Disease (PD) until 1998.

There wasn't a LEWY diagnosis until then. It was most often called PD with

Dementia. Many doctors still put this illness with Parkinson's.

It sometimes takes a while to identify something. 50 years ago, there wasn't a

name or a diagnosis for the disease, that we now call Parkinson's. I think a

doctor at the Mayo Clinic / Rochester Minnesota, came up with that in 1958 or

1959.

Lewy / LBD has a spectrum of symptoms, but tends not to follow the direct line

of stages like Alzheimer's Disease. The brain areas affect by LBD are more

diverse: not concentrated in one area as with Alzheimer.

One of the things that tends to mask the disease, and make diagnosis more

difficult, is that: A person with LBD can often rise to the occasion and have

better than their normal mental clarity. They can be exceptionally sharp, for

example when making a visit with the doctor, or lawyer.

There is a spectrum of symptoms with few firm rules, but basically, The slow

shuffling walk, mild cognitive impairment with memory lapses, and halucinations

are signs of LBD.

Initially " Pure " Parkinson Disease tends to be a physical imparement. Like

J Fox: the mind can retain its cognitive skills.

Initially " Pure " Alzheimer Disease tends to be mental impairment. The body can

retain normal movement after the cognitive skills have declined.

People can have both PD and AD at the same time, but when they get that dual

diagnosis, some of us suspect that it is really LBD. The Hallucinations that

are associated with LBD are not common with either PD or AD.

Some of the medicines that help with the slow movement, and shakings associated

with PD, tend to make the hallucinations worse with LBD. Our loved ones with

LBD have a low tolerance to many meds. A low dose may help, but a bit higher

dose, can quickly make things much worse. On this group site, there is a list

of meds that tend to be problems with LBD

Dann

l_leedham wrote:

My Name is Lyn and i am from Australia,

It has been diagnosed by a neurologist that MIL has Lewy Body

disease, he is the specialist and her G.P has said tis scizophrenia

and Parkinsons.

So we are all a bit confused.

I will just gie you a brief history.

She has been on blood pressure pills almost all of her life she ahs

had Bowle canecr over ten years ago now.

About eight years ago she had a minor stroke but recovered but still

was weak in a lot of areas.

nearly 2 and half years ago the FIL died and so it was about 2to3

years before that the MIL was diagnopsed as having parkinsons.

Anyway she went to live in the Community Centre so it is like a

nusring home, she had was going along very nicely.

until a few moths ago wehn all of a sudden she started to having

bouts of falling and having this cough which she was saying its

gettiong worse, then she just kept getting slower and slwoer.

Up until a couple of weeks ago she went in to this starring state and

not being able to swallow and was like a catatonic state.

She has been in another hospital and thats when the Neurologist gave

the diagnoses of Lewy body disease.

She is really Paranoid, sometimes she cries at the drop of hat some

tiems you can talk to her ok but most of the time she cant stay wiht

a simple sentence.

We have an Autistic son who has high levels of Anxiety and whn went

to Visit the MIL well she scared and made him very confused.

She just went on and on about keepin everything quiet becasue she

thinks that people are out to get us sh wont eat becasue she thinks

that poepl are trying to poison here.

Now my question is do peoplewith Lewy body go like this.

She does get tired a lot too.

Hope you can help me in finding things out

Hugs Lyn

[Guest guest]

Hello its me again sorry to be a nuisance but we have had a phone call

tonight from SIl she told us that the MIL had to have oxygen today as her

fingers are starting to turn blue does this mean anything.

It also seems that she is just not sleeping at night at all and she just

sits in her recliner

Any info would be helpful Thanx

Hugs Lyn

-- Re: hello

Hello back at you Lyn. You've found the right place -- the place noone

wants to be, yet grateful for it anyway... From what you wrote it

sounds like LBD -- what medications is your MIL on? What concerns me is

that her GP says that she has schizophrenia + parkinsons -- and one of

the medications used for schizophrenia is Risperidol. My mother did

worse after taking that medication and after just 3 weeks went from

being self-sufficient to needing 24/7 nursing home care. 50% of those

with LBD suffer from extreme sensitivity to anti-psychotics so be

careful with the meds. The best advice: go low, go slow. Post your

questions and we're here for you. And be sure to read the links

section -- tons of useful info:

http://health.groups.yahoo.com/group/LBDcaregivers/links

[Guest guest]

Yes, Lyn, it means something. It can be related to her heart, lungs, or

hypothermia, just to name three. She is being given oxygen which signifies a

serious problem of not getting enough oxygen to various parts of her body. Keep

us posted as to what the Doctor says. They will be running test, and will say

something soon.

Imogene

In a message dated 12/19/2006 8:54:08 AM Central Standard Time,

lynbrian7@... writes:

Hello its me again sorry to be a nuisance but we have had a phone call

tonight from SIl she told us that the MIL had to have oxygen today as her

fingers are starting to turn blue does this mean anything.

It also seems that she is just not sleeping at night at all and she just

sits in her recliner

Any info would be helpful Thanx

Hugs Lyn

[Guest guest]

Hello Imogene,

I know we are going to be losing her soon.

I just have this awful feeling.

I rang the NCC last night and spoke to a nurse that I know personally and

she told me that the MIL was very aggitated and screaming out and was still

having oxygen.

They gave her a shower and put her into her bed she was calm for a little

while but after awhile she started singing out they rang for some one to

come and sit with her and that was ok for awhile too but then she started to

yell out again.

I am very scared for my Husband as its his Mum and our little boy who

is special needs and has a great relationship with hsi Nan.

I am not sure if I can do this but this is the web site so you can read

about him.

www.monicagracefund.com

It is old now as he is 13 .

Thanx for helping me.

Hugs Lyn

-- Re: Re: hello

Yes, Lyn, it means something. It can be related to her heart, lungs, or

hypothermia, just to name three. She is being given oxygen which signifies a

serious problem of not getting enough oxygen to various parts of her body.

Keep

us posted as to what the Doctor says. They will be running test, and will

say

something soon.

Imogene

In a message dated 12/19/2006 8:54:08 AM Central Standard Time,

lynbrian7@... writes:

Hello its me again sorry to be a nuisance but we have had a phone call

tonight from SIl she told us that the MIL had to have oxygen today as her

fingers are starting to turn blue does this mean anything.

It also seems that she is just not sleeping at night at all and she just

sits in her recliner

Any info would be helpful Thanx

Hugs Lyn

[Guest guest]

Hi Lyn, I am sorry about your MIL. Your husband and son will lean on you for

support, although they may not appear to be doing so. You are their anchor

during this hard time. And, a good one.

Is that your little boy in the picture? He is darling. Very darling whether

he is your or not, but I think he is yours. This is a good site you are

establishing. Very nice.

Yes, it seems as if your mother in law is shutting down. But, I am glad that

she is where she is getting care. Take care of yourself and your wonderful

family.

Imogene

In a message dated 12/19/2006 9:42:16 PM Central Standard Time,

lynbrian7@... writes:

Hello Imogene,

I know we are going to be losing her soon.

I just have this awful feeling.

I rang the NCC last night and spoke to a nurse that I know personally and

she told me that the MIL was very aggitated and screaming out and was still

having oxygen.

They gave her a shower and put her into her bed she was calm for a little

while but after awhile she started singing out they rang for some one to

come and sit with her and that was ok for awhile too but then she started to

yell out again.

I am very scared for my Husband as its his Mum and our little boy who

is special needs and has a great relationship with hsi Nan.

I am not sure if I can do this but this is the web site so you can read

about him.

www.monicagracefund.com

It is old now as he is 13 .

Thanx for helping me.

Hugs Lyn

[Guest guest]

Lyn: If your MIL has LBD and she is on Abillify, that

is one of the drugs that they shouldn't have. They

put my husband on that a short time before I knew

about LBD. Is there something else they can use?

--- Hugs Lyn wrote:

> I am not sure why but my MIL had to go see a

> Psychiatrist yesterday and this

> Is what he says.

> There is nothing any one can do she needs to be made

> calm as she is hearing

> Voices and she needs to be kept calm.

> He says her medication needs to be doubled.

> said his sister told him she is on Abilfy.

> It looks like she is nearing the end which is what I

> feel.

> Sad Christmas.

> Sorry about the mix up sending it wiht out an

> attachement

> Hugs Lyn

>

__________________________________________________

[Guest guest]

Hi June.

I went through some of the details last night I can say but no one will

believe me that's the whole idea.

Because no one is saying now that she really has LBD so its just me out on a

limb and every one is saying she is just psychotic .

So I will say to but its up to him and usually the response will be

well the dr.S know

So I cant say anything and plus the Dr thinks she is schizophrenic.

So its not my call even though I will say something

Hugs Lyn

-- Re: Hello

Lyn: If your MIL has LBD and she is on Abillify, that

is one of the drugs that they shouldn't have. They

put my husband on that a short time before I knew

about LBD. Is there something else they can use?

--- Hugs Lyn wrote:

> I am not sure why but my MIL had to go see a

> Psychiatrist yesterday and this

> Is what he says.

> There is nothing any one can do she needs to be made

> calm as she is hearing

> Voices and she needs to be kept calm.

> He says her medication needs to be doubled.

> said his sister told him she is on Abilfy.

> It looks like she is nearing the end which is what I

> feel.

> Sad Christmas.

> Sorry about the mix up sending it wiht out an

> attachement

> Hugs Lyn

>

__________________________________________________

[Guest guest]

Lyn,

A DVD has been made of a symposium in Florida at the beginning of the year. You

can get one by sending your home address and in the SUBJECT line put " DVD

Request. " Unfortunately many MDs aren't familiar with this dementia. This DVD

has an MD talking about what it is and it also has Caregivers discussing what is

happening to their loved ones.

You might want to check out some of the information. There is also a second

site in London at

www.lewybody.org

Both sites have a lot of info that you can check out copy and share.

My Mom died 4 years ago and never did get the LBD diagnosis. I went looking for

information when she seemed different than other Alzheimers patients.

You can request and will get a copy of the brochure with you DVD if you order

one. They request a donation for the production of the DVD. You can or don't

need to do so. Also $5.00 could cover the reproduction of it..

A lot of the brochure has been written by our Scientific Board members who are

all MDs.

Just thought I would let the new people know.

Hugs,

Donna R

Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th year in

a nh.

She was almost 89 when she died in '02. No dx other than mine.

Re: Hello

Lyn: If your MIL has LBD and she is on Abillify, that

is one of the drugs that they shouldn't have. They

put my husband on that a short time before I knew

about LBD. Is there something else they can use?

--- Hugs Lyn wrote:

> I am not sure why but my MIL had to go see a

> Psychiatrist yesterday and this

> Is what he says.

> There is nothing any one can do she needs to be made

> calm as she is hearing

> Voices and she needs to be kept calm.

> He says her medication needs to be doubled.

> said his sister told him she is on Abilfy.

> It looks like she is nearing the end which is what I

> feel.

> Sad Christmas.

> Sorry about the mix up sending it wiht out an

> attachement

> Hugs Lyn

>

__________________________________________________

[Guest guest]

Mandy

 wow girl so good to here from you and then to read such good news on top of it

is just wonderful keep it up and go get them at school but always remember to

smile and make them wonder what your up to.

I also want to thank you for posting again as it is people like you who do come

back and say how there doing that helps many others keep plugging along working

for there day also

 so congrats and good luck

hugs

 

The Redneck

Marty G.

Be careful about reading health books. You may die of a misprint.

Mark Twain

I don't give a damn for a man that can only spell a word one way.

Mark Twain

 

To learn about Stills Disease http://www.stillsdisease.org/stills_info

[Guest guest]

Dearest ,

Thank you so much for this post!  With all you are going through and you take

time to offer prayers and encouragement!!  Posts like this and folks like you

are why i love this group and consider it my family!

Again.....thank you....and may God Bless you and hold you close to Him!

You are in my prayers as well!!!

Many Blessings!

Larry B

NC

[Guest guest]

Hello everyone,

My name is Audrey and I am new to this group. I was diagnosed with AOSD in June

of 2010. I became ill in May and it has been a battle ever since. I joined

this group to hear from others who are also battling this crazy illness.

Here is my story. I am 37 years old, married with 3 children. I had a bout of

bronchitis at the end of May and was put on Zithromax. On the 5th day which was

the last day of Zithromax, I woke up with a stiff shoulder. A few days later, i

was running a very high fever and stiff and sore everywhere. My primary care

doctor sent me to see a Rheumy based on my symptoms and labs. I also had a

history as a child of some sort of Rheumatic condition but it was never

diagnosed. Then in my early 20's I had a similar bout but not as severe as what

I am dealing with now.

My labs have been pretty consistent. High White Blood Cell count, 37,000, Low

Red Blood Cell count(anemia), High Ferritn, Sed Rate 130, CRP, 120... etc..

etc.. I also am still having fevers about 1-2 per week.

Based on my symptoms and labs and ruling out all the other conditions tht mimic

AOSD I was diagnosed fairly quickly in June.

I am currently taking Methotrexate, 3200MG Ibuprophen daily, Prednisone, and

Folic Acid. I am waiting for approval to start a new IV therapy called Actemra.

I tried Plaquenil, and Enbrel with no improvement. Even with all the medicine I

am on, I am still suffering with swelling and pain. It mainly effects my

wrists, neck, knees, and chest.

I was wondering if anyone in this group has had treatment with Actemra anand if

so what there experience was like? Did it help?

I am so glad I found this group. It is nice to have people to talk to that know

what this is like. I feel like no matter how you try to explain your illness

people just don't get it because they are not going through this.

~Audrey

[Guest guest]

 

 Audrey

Welcome to out family of stills dragon slayers or at lest fighters. Now didn't

your mom ever tell you not to go playing around in dragon dens because you may

get bit?

Your brief story sounds a bit like my own. Sick as a child but no real DX of

what it was  then sick on and off threw life tell the big bad one that got me a

DX of stills. Well from that day to now a few other Auto immune things have also

been added as they seam to like to run together sadly. As for the med you asking

about can not help you there but many here can and will if I know them. I have

been fighting this for about ten years now that is from the DX  I was married

and had two kids at that time but the wife divorced me because of the stills or

I should say the complications of it like no pay check when I could no longer

work and along the way she managed to turn on child my daughter against me also

.. My son and I well it’s as it should be and that is a good thing. I will say

Stills can also give you some good things but there hard to see at first but as

you learn to live and adjust to stills they can become a bit easier to see. One

other thing and this is not to say your nuts but in this life it helps I know as

I am 100% USDA crazy LOL I also suggest counseling to new folks but not just the

one with stills but the whole house hold as it will and dose effect every one

from the kids on up . It can help with the changes and the But you do not look

sick mentality of some. I say this as in my house hold we did not do this and

well it did effect us all and helped lead to the divorce .O it may have still

happened any way but some things with my kids because of there dad being sick

should not have like there fear dad could die. any hoot welcome and think about

it but tell that point and sooner is better then later but even that is better

then never ask and talk here all you want be it for info to vent or just to know

there are others out here who understand

Hugs 

 

The  Redneck  

Marty G     

 

Excuses are like backsides. Everybody’s got one and they all stink.

 

A person who demands more gun control legislation is like a chicken who roots

for Colonel

To learn more about Stills Disease or to make a tax deductible donation:

 http://www.stillsdisease.org/stills_info

 

________________________________

Subject: Hello

 

Hello everyone,

My name is Audrey and I am new to this group. I was diagnosed with AOSD in June

of 2010. I became ill in May and it has been a battle ever since. I joined this

group to hear from others who are also battling this crazy illness.

..............~Audrey

[Guest guest]

Welcome Audrey,

We hope you find many years of comfort and support here.

Smiles and hugs for your evening,

To: Stillsdisease

From: thibodeau29@...

Date: Thu, 20 Jan 2011 22:08:07 +0000

Subject: Hello

Hello everyone,

My name is Audrey and I am new to this group.

~Audrey

[Guest guest]

Hello Audrey,

I was diagnosed with AOSD 11/06. I have been on Actemra for the last year,

previous to that I took MTX, Kineret, Humira, Cellsept, Hydrochloroquine, and

Prednisone with little lasting improvement; Actemra has provided the steadiest

improvement for me. The disease is always in the background and I have several

joints that have become symptomatic but the inflammatory part of the illness has

been arrested for now. I do not worry as much about a sudden hospitalization for

a flair and I can even make some plans for the future. Make sure your physician

codes your illness as rheumatoid arthritis not Stills as most insurers will not

approve Actemra for Stills only at this time.

Thanks,

Harry S.

To: Stillsdisease

From: thibodeau29@...

Date: Thu, 20 Jan 2011 22:08:07 +0000

Subject: Hello

Hello everyone,

My name is Audrey and I am new to this group. I was diagnosed with AOSD in June

of 2010. I became ill in May and it has been a battle ever since. I joined

this group to hear from others who are also battling this crazy illness.

Here is my story. I am 37 years old, married with 3 children. I had a bout of

bronchitis at the end of May and was put on Zithromax. On the 5th day which was

the last day of Zithromax, I woke up with a stiff shoulder. A few days later, i

was running a very high fever and stiff and sore everywhere. My primary care

doctor sent me to see a Rheumy based on my symptoms and labs. I also had a

history as a child of some sort of Rheumatic condition but it was never

diagnosed. Then in my early 20's I had a similar bout but not as severe as what

I am dealing with now.

My labs have been pretty consistent. High White Blood Cell count, 37,000, Low

Red Blood Cell count(anemia), High Ferritn, Sed Rate 130, CRP, 120... etc..

etc.. I also am still having fevers about 1-2 per week.

Based on my symptoms and labs and ruling out all the other conditions tht mimic

AOSD I was diagnosed fairly quickly in June.

I am currently taking Methotrexate, 3200MG Ibuprophen daily, Prednisone, and

Folic Acid. I am waiting for approval to start a new IV therapy called Actemra.

I tried Plaquenil, and Enbrel with no improvement. Even with all the medicine I

am on, I am still suffering with swelling and pain. It mainly effects my

wrists, neck, knees, and chest.

I was wondering if anyone in this group has had treatment with Actemra anand if

so what there experience was like? Did it help?

I am so glad I found this group. It is nice to have people to talk to that know

what this is like. I feel like no matter how you try to explain your illness

people just don't get it because they are not going through this.

~Audrey

[Guest guest]

Thanks Harry! I am glad to hear that Actemra has been helping you. Are you

taking other medications along with Actemra?

Hello

Hello everyone,

My name is Audrey and I am new to this group. I was diagnosed with AOSD in

June of 2010. I became ill in May and it has been a battle ever since. I

joined this group to hear from others who are also battling this crazy

illness.

Here is my story. I am 37 years old, married with 3 children. I had a bout

of bronchitis at the end of May and was put on Zithromax. On the 5th day

which was the last day of Zithromax, I woke up with a stiff shoulder. A few

days later, i was running a very high fever and stiff and sore everywhere.

My primary care doctor sent me to see a Rheumy based on my symptoms and

labs. I also had a history as a child of some sort of Rheumatic condition

but it was never diagnosed. Then in my early 20's I had a similar bout but

not as severe as what I am dealing with now.

My labs have been pretty consistent. High White Blood Cell count, 37,000,

Low Red Blood Cell count(anemia), High Ferritn, Sed Rate 130, CRP, 120...

etc.. etc.. I also am still having fevers about 1-2 per week.

Based on my symptoms and labs and ruling out all the other conditions tht

mimic AOSD I was diagnosed fairly quickly in June.

I am currently taking Methotrexate, 3200MG Ibuprophen daily, Prednisone, and

Folic Acid. I am waiting for approval to start a new IV therapy called

Actemra. I tried Plaquenil, and Enbrel with no improvement. Even with all

the medicine I am on, I am still suffering with swelling and pain. It

mainly effects my wrists, neck, knees, and chest.

I was wondering if anyone in this group has had treatment with Actemra anand

if so what there experience was like? Did it help?

I am so glad I found this group. It is nice to have people to talk to that

know what this is like. I feel like no matter how you try to explain your

illness people just don't get it because they are not going through this.

~Audrey

[Guest guest]

Marty,

Thank you for the information. It sounds like you have had some very difficult

times too. I am grateful to have found this group!

>

>  

>  Audrey

> Welcome to out family of stills dragon slayers or at lest fighters. Now didn't

> your mom ever tell you not to go playing around in dragon dens because you may

> get bit?

>

> Your brief story sounds a bit like my own. Sick as a child but no real DX of

> what it was  then sick on and off threw life tell the big bad one that got me

a

> DX of stills. Well from that day to now a few other Auto immune things have

also

> been added as they seam to like to run together sadly. As for the med you

asking

> about can not help you there but many here can and will if I know them. I have

> been fighting this for about ten years now that is from the DX  I was married

> and had two kids at that time but the wife divorced me because of the stills

or

> I should say the complications of it like no pay check when I could no longer

> work and along the way she managed to turn on child my daughter against me

also

> . My son and I well it’s as it should be and that is a good thing. I will

say

> Stills can also give you some good things but there hard to see at first but

as

> you learn to live and adjust to stills they can become a bit easier to see.

One

> other thing and this is not to say your nuts but in this life it helps I know

as

> I am 100% USDA crazy LOL I also suggest counseling to new folks but not just

the

> one with stills but the whole house hold as it will and dose effect every one

> from the kids on up . It can help with the changes and the But you do not look

> sick mentality of some. I say this as in my house hold we did not do this and

> well it did effect us all and helped lead to the divorce .O it may have still

> happened any way but some things with my kids because of there dad being sick

> should not have like there fear dad could die. any hoot welcome and think

about

> it but tell that point and sooner is better then later but even that is better

> then never ask and talk here all you want be it for info to vent or just to

know

> there are others out here who understand

> Hugs 

>  

> The  Redneck  

> Marty G     

>  

> Excuses are like backsides. Everybody’s got one and they all stink.

>  

> A person who demands more gun control legislation is like a chicken who

roots

> for Colonel

>

> To learn more about Stills Disease or to make a tax deductible donation:

>  http://www.stillsdisease.org/stills_info

>  

>

>

>

>

>

> ________________________________

>

> Subject: Hello

>

>  

> Hello everyone,

>

> My name is Audrey and I am new to this group. I was diagnosed with AOSD in

June

> of 2010. I became ill in May and it has been a battle ever since. I joined

this

> group to hear from others who are also battling this crazy illness.

>

>

> .............~Audrey

>

>

>

>

>

[Guest guest]

Currently in addition to the Actemra I am taking Celebrex 200mg/day. I have been

off the steroids for about 4-5 months.

Harry S.

To: Stillsdisease

From: thibodeau29@...

Date: Fri, 21 Jan 2011 09:55:09 -0500

Subject: RE: Hello

Thanks Harry! I am glad to hear that Actemra has been helping you. Are

you

taking other medications along with Actemra?

Hello

Hello everyone,

My name is Audrey and I am new to this group. I was diagnosed with AOSD in

June of 2010. I became ill in May and it has been a battle ever since. I

joined this group to hear from others who are also battling this crazy

illness.

Here is my story. I am 37 years old, married with 3 children. I had a bout

of bronchitis at the end of May and was put on Zithromax. On the 5th day

which was the last day of Zithromax, I woke up with a stiff shoulder. A few

days later, i was running a very high fever and stiff and sore everywhere.

My primary care doctor sent me to see a Rheumy based on my symptoms and

labs. I also had a history as a child of some sort of Rheumatic condition

but it was never diagnosed. Then in my early 20's I had a similar bout but

not as severe as what I am dealing with now.

My labs have been pretty consistent. High White Blood Cell count, 37,000,

Low Red Blood Cell count(anemia), High Ferritn, Sed Rate 130, CRP, 120...

etc.. etc.. I also am still having fevers about 1-2 per week.

Based on my symptoms and labs and ruling out all the other conditions tht

mimic AOSD I was diagnosed fairly quickly in June.

I am currently taking Methotrexate, 3200MG Ibuprophen daily, Prednisone, and

Folic Acid. I am waiting for approval to start a new IV therapy called

Actemra. I tried Plaquenil, and Enbrel with no improvement. Even with all

the medicine I am on, I am still suffering with swelling and pain. It

mainly effects my wrists, neck, knees, and chest.

I was wondering if anyone in this group has had treatment with Actemra anand

if so what there experience was like? Did it help?

I am so glad I found this group. It is nice to have people to talk to that

know what this is like. I feel like no matter how you try to explain your

illness people just don't get it because they are not going through this.

~Audrey

[Guest guest]

I am so glad to hear that you were able to get off the steroids. I am

looking forward to getting to that point.

Thanks again for sharing your info with me.

Audrey

Hello

Hello everyone,

My name is Audrey and I am new to this group. I was diagnosed with AOSD in

June of 2010. I became ill in May and it has been a battle ever since. I

joined this group to hear from others who are also battling this crazy

illness.

Here is my story. I am 37 years old, married with 3 children. I had a bout

of bronchitis at the end of May and was put on Zithromax. On the 5th day

which was the last day of Zithromax, I woke up with a stiff shoulder. A few

days later, i was running a very high fever and stiff and sore everywhere.

My primary care doctor sent me to see a Rheumy based on my symptoms and

labs. I also had a history as a child of some sort of Rheumatic condition

but it was never diagnosed. Then in my early 20's I had a similar bout but

not as severe as what I am dealing with now.

My labs have been pretty consistent. High White Blood Cell count, 37,000,

Low Red Blood Cell count(anemia), High Ferritn, Sed Rate 130, CRP, 120...

etc.. etc.. I also am still having fevers about 1-2 per week.

Based on my symptoms and labs and ruling out all the other conditions tht

mimic AOSD I was diagnosed fairly quickly in June.

I am currently taking Methotrexate, 3200MG Ibuprophen daily, Prednisone, and

Folic Acid. I am waiting for approval to start a new IV therapy called

Actemra. I tried Plaquenil, and Enbrel with no improvement. Even with all

the medicine I am on, I am still suffering with swelling and pain. It

mainly effects my wrists, neck, knees, and chest.

I was wondering if anyone in this group has had treatment with Actemra anand

if so what there experience was like? Did it help?

I am so glad I found this group. It is nice to have people to talk to that

know what this is like. I feel like no matter how you try to explain your

illness people just don't get it because they are not going through this.

~Audrey