New Member

[Guest guest]

Hi Margaret -

I take LDN but none of the ABCR's. However my worst symptom is also

ON (was almost blind in February) To be honest, I really don't think

that the LDN has a huge effect on my ON - time seems to be the

ticket there. But where I have gotten a huge benefit from LDN is in

energy, sleep and bladder urgency. Also, I had a very recent major

stress event, and I think that the LDN is helping to keep my

symptoms at bay. All of those things have made it very mucy worth it

to me. (And of course, I am hoping for an end to progression - but

only time will tell!)

Good luck, and be well - Cinders

[Guest guest]

I came across this site. I know they have mold assistance for people

in Arizona, at least that is what it says in their web site.

You might check it out. Just click on the link below.

http://www.mold-help.org/index.htm

On Jul 4, 2004, at 9:44 PM, sarahrg1 wrote:

> i am a new member and i have a toxic mold and now also asbestos

> challenge in my home. i discovered about 4 months ago when a plumber

> came to fix a washer whose pipe broke in the wall, that i have a

> massive toxic mold difficulty that appears to be a very long

> standing one. he discovered it after knocking open the wall to

> repair the pipe. the problem room(s) is my back bathroom/laundry

> room and possibly the adjoining back storage room.

>

> i got an estimate from a reputable company who is licensed to get rid

> of it and he wanted close to four thousand dollars to remove it and

> the minor asbestos difficulty in the storage room. then to put the

> rooms back together would run another 5-6 thousand dollars. there

> are few places win phoenix, az who can do the work.

>

> the problem is i do not have ten thousand dollars. i live on social

> security disabbility of 570 dollars a month and get meals-on-wheels

> because i do not have enough money to eat properly. i can not get a

> loan because i do not have enough money available to pay the loan

> back. i own my house free and clear and have lived there since the

> fall of 1996. i also found out that to destroy the back part of my

> house would cost twenty thousand ddollars and i still fdo not have

> that kind of money.

>

> i have been unable to do my laundry because the laundry room is the

> problem area and i do not have the spare cash even for the

> laundramat, so i have been doing my laundry in the bath tub.

>

> what can i do? how can i fix the toxic mold problem. i have heart

> disease plus many other health issues. the city of phoenix, az does

> not have any programs to help with this problem and my house

> insurance and home warranty both do not cover toxic mold.

>

> my laundry/bathroom have been duct taped shut both the air vents and

> the doors (including the storeroom with the asbestos.)

>

> any suggestions? i am desperate.

>

>

>

>

>

> FAIR USE NOTICE:

>

> This site contains copyrighted material the use of which has not

> always been specifically authorized by the copyright owner. We are

> making such material available in our efforts to advance understanding

> of environmental, political, human rights, economic, democracy,

> scientific, and social justice issues, etc. We believe this

> constitutes a 'fair use' of any such copyrighted material as provided

> for in section 107 of the US Copyright Law. In accordance with Title

> 17 U.S.C. Section 107, the material on this site is distributed

> without profit to those who have expressed a prior interest in

> receiving the included information for research and educational

> purposes. For more information go to:

> http://www.law.cornell.edu/uscode/17/107.shtml. If you wish to use

> copyrighted material from this site for purposes of your own that go

> beyond 'fair use', you must obtain permission from the copyright

> owner.

>

[Guest guest]

I came across this site. I know they have mold assistance for people

in Arizona, at least that is what it says in their web site.

You might check it out. Just click on the link below.

http://www.mold-help.org/index.htm

On Jul 4, 2004, at 9:44 PM, sarahrg1 wrote:

> i am a new member and i have a toxic mold and now also asbestos

> challenge in my home. i discovered about 4 months ago when a plumber

> came to fix a washer whose pipe broke in the wall, that i have a

> massive toxic mold difficulty that appears to be a very long

> standing one. he discovered it after knocking open the wall to

> repair the pipe. the problem room(s) is my back bathroom/laundry

> room and possibly the adjoining back storage room.

>

> i got an estimate from a reputable company who is licensed to get rid

> of it and he wanted close to four thousand dollars to remove it and

> the minor asbestos difficulty in the storage room. then to put the

> rooms back together would run another 5-6 thousand dollars. there

> are few places win phoenix, az who can do the work.

>

> the problem is i do not have ten thousand dollars. i live on social

> security disabbility of 570 dollars a month and get meals-on-wheels

> because i do not have enough money to eat properly. i can not get a

> loan because i do not have enough money available to pay the loan

> back. i own my house free and clear and have lived there since the

> fall of 1996. i also found out that to destroy the back part of my

> house would cost twenty thousand ddollars and i still fdo not have

> that kind of money.

>

> i have been unable to do my laundry because the laundry room is the

> problem area and i do not have the spare cash even for the

> laundramat, so i have been doing my laundry in the bath tub.

>

> what can i do? how can i fix the toxic mold problem. i have heart

> disease plus many other health issues. the city of phoenix, az does

> not have any programs to help with this problem and my house

> insurance and home warranty both do not cover toxic mold.

>

> my laundry/bathroom have been duct taped shut both the air vents and

> the doors (including the storeroom with the asbestos.)

>

> any suggestions? i am desperate.

>

>

>

>

>

> FAIR USE NOTICE:

>

> This site contains copyrighted material the use of which has not

> always been specifically authorized by the copyright owner. We are

> making such material available in our efforts to advance understanding

> of environmental, political, human rights, economic, democracy,

> scientific, and social justice issues, etc. We believe this

> constitutes a 'fair use' of any such copyrighted material as provided

> for in section 107 of the US Copyright Law. In accordance with Title

> 17 U.S.C. Section 107, the material on this site is distributed

> without profit to those who have expressed a prior interest in

> receiving the included information for research and educational

> purposes. For more information go to:

> http://www.law.cornell.edu/uscode/17/107.shtml. If you wish to use

> copyrighted material from this site for purposes of your own that go

> beyond 'fair use', you must obtain permission from the copyright

> owner.

>

[Guest guest]

Welcome to the group!

You have lost almost 40 pounds in 2 months??? Losing more rapidly for the

first few months of CRON is normal, but 40 pounds in a couple of months is

too much too fast. If you are still losing at this rapid rate, you should

slow down. This is not a race to see how fast you can lose in the shortest

amount of time.

You don't say how old you are, but if you're middle aged or older, losing

this fast will be detrimental to your health, rather than the opposite

according to the animal models.

on 7/7/2004 10:08 AM, jandrews4u2 at jandrews4u2@... wrote:

> Hi all

>

> I would like to introduce myself as a new member. I started a

> cron type diet a couple of months ago. I weighed 185 pounds at a

> height of 5'9 " . I am now at 148 and still losing. A typical day would

> start by eating an apple and banana for breakfast,then oatmeal made

> with soy milk and ground flaxseed. Lunch would be salmon and a salad

> made of spinach,peppers,tomatoes.Dinner is usually some type beans

> with broccoli and carrots.Snacks are walnuts, almonds or sunflower

> seeds. My former diet was the worst you could imagine. Hamburgers and

> soft drinks with ice cream for dessert! I must not have a cholesterol

> problem because after 40 years of heavy meat consumption my

> cholesterol is within acceptable limits. I worry more about blood

> sugar as my aunt died many years ago of diabetes. I read lee shuries

> post with its chart with great interest. I plan on doing something

> similar.

>

[Guest guest]

,

I was lucky enough to find a group that might be able to help you -

they helped me a great deal when I needed it most. Not sure if they

do asbestos

http://www.moldacrossamerica.org

They also have toll free phone lines and online chats. too. 877-280-

6653

Good Luck to you.

GordonB

Alaska

--- In , " sarahrg1 " <sarahrg1@y...>

wrote:

> i am a new member and i have a toxic mold and now also asbestos

> challenge in my home. i discovered about 4 months ago when a

plumber

> came to fix a washer whose pipe broke in the wall, that i have a

> massive toxic mold difficulty that appears to be a very long

> standing one. he discovered it after knocking open the wall to

> repair the pipe. the problem room(s) is my back bathroom/laundry

> room and possibly the adjoining back storage room.

>

> i got an estimate from a reputable company who is licensed to get

rid

> of it and he wanted close to four thousand dollars to remove it and

> the minor asbestos difficulty in the storage room. then to put the

> rooms back together would run another 5-6 thousand dollars. there

> are few places win phoenix, az who can do the work.

>

> the problem is i do not have ten thousand dollars. i live on

social

> security disabbility of 570 dollars a month and get meals-on-wheels

> because i do not have enough money to eat properly. i can not get

a

> loan because i do not have enough money available to pay the loan

> back. i own my house free and clear and have lived there since the

> fall of 1996. i also found out that to destroy the back part of my

> house would cost twenty thousand ddollars and i still fdo not have

> that kind of money.

>

> i have been unable to do my laundry because the laundry room is the

> problem area and i do not have the spare cash even for the

> laundramat, so i have been doing my laundry in the bath tub.

>

> what can i do? how can i fix the toxic mold problem. i have heart

> disease plus many other health issues. the city of phoenix, az

does

> not have any programs to help with this problem and my house

> insurance and home warranty both do not cover toxic mold.

>

> my laundry/bathroom have been duct taped shut both the air vents

and

> the doors (including the storeroom with the asbestos.)

>

> any suggestions? i am desperate.

[Guest guest]

,

I was lucky enough to find a group that might be able to help you -

they helped me a great deal when I needed it most. Not sure if they

do asbestos

http://www.moldacrossamerica.org

They also have toll free phone lines and online chats. too. 877-280-

6653

Good Luck to you.

GordonB

Alaska

--- In , " sarahrg1 " <sarahrg1@y...>

wrote:

> i am a new member and i have a toxic mold and now also asbestos

> challenge in my home. i discovered about 4 months ago when a

plumber

> came to fix a washer whose pipe broke in the wall, that i have a

> massive toxic mold difficulty that appears to be a very long

> standing one. he discovered it after knocking open the wall to

> repair the pipe. the problem room(s) is my back bathroom/laundry

> room and possibly the adjoining back storage room.

>

> i got an estimate from a reputable company who is licensed to get

rid

> of it and he wanted close to four thousand dollars to remove it and

> the minor asbestos difficulty in the storage room. then to put the

> rooms back together would run another 5-6 thousand dollars. there

> are few places win phoenix, az who can do the work.

>

> the problem is i do not have ten thousand dollars. i live on

social

> security disabbility of 570 dollars a month and get meals-on-wheels

> because i do not have enough money to eat properly. i can not get

a

> loan because i do not have enough money available to pay the loan

> back. i own my house free and clear and have lived there since the

> fall of 1996. i also found out that to destroy the back part of my

> house would cost twenty thousand ddollars and i still fdo not have

> that kind of money.

>

> i have been unable to do my laundry because the laundry room is the

> problem area and i do not have the spare cash even for the

> laundramat, so i have been doing my laundry in the bath tub.

>

> what can i do? how can i fix the toxic mold problem. i have heart

> disease plus many other health issues. the city of phoenix, az

does

> not have any programs to help with this problem and my house

> insurance and home warranty both do not cover toxic mold.

>

> my laundry/bathroom have been duct taped shut both the air vents

and

> the doors (including the storeroom with the asbestos.)

>

> any suggestions? i am desperate.

[Guest guest]

Welcome Tracey! Thanks for introducing yourself to us. Please be assured

the emotions you're experiencing are completely normal. You and your family

are still in the very earliest stages of coming to terms with news like

this. I've found that, for many parents, it goes in cycles - you go through

some or all the stages of grief (denial, anger, sadness, acceptance, etc.)

but then that's not the end of it. The slightest thing (a song on the

radio, a missed milestone, a visit with an old friend) can send you right

back to those old feelings again. This came as a surprise to me. I thought

I would grieve and then move on and be " okay with it " . I don't mean to make

it sound so dreadful - it DOES get better - but I always like to share my

experience with newer parents so that they won't feel like there's something

wrong with them if they find themselves making progress with acceptance and

then regressing for awhile.

It's wonderful that was identified this young, and that's a real credit

to you. So much change and progress can be achieved in these critical

preschool years. I think you'll find the members of this group to be an

incredible source of information and support.

Sorry I can't make it to the zoo - hope you all have a magnificent time!

Norah

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

From: tracey [mailto:bubs04@...]

Sent: Saturday, August 21, 2004 6:16 PM

Subject: [ ] new member

hi, I'm Tracey and my family is in Strongsville. we have 2 sons (and

a daughter due on Christmas Day), the youngest of which was just

diagnosed this Spring as being autistic. is 3 years old and the

lady we just finished working with at Beechbrook said that he is a

puzzle because so many of the things that they expect to see in an

autistic child just don't seem to be there. there are enough cues

that tell them that he is though. I was thrilled to find this group

the other day. I am still kind of in that acceptance one

minute/denial the next minute phase and just when I think I have a

grip on it and am fine with things I have been falling apart. who

knows, maybe it's the pregnancy hormones I am very bewildered

as to how to communicate with him at times. there are times when I

wonder if he has a clue as to what I am saying to him, but then

there are moments-usually when he is misbehaving and has been caught

in the act-that I know darn well that he knows what I am saying

because he laughs at me and runs away. I look forward to learning to

find alternate ways to deal with situations with him and to teach

him how to communicate with us. it's funny how the little things

would make me feel so amazing right now-I told his OT last week that

I want him to be able to blow out his own birthday candles next May,

or to understand how to give me a " real " kiss on the cheek, or even

to say Dad or his name. there I go getting emotional again...anyhow,

I look forward to learning from all of your experiences and to

getting to know you folks. thanks for accepting us into your group

and the kids and I look forward to meeting you at the zoo on Monday!

Tracey, Franc, DJ, and

[Guest guest]

Welcome to the group, Tracey! I am glad that you found us! Congratulations on your pregnancy. About 5 months after my oldest son was diagnosed with autism, I became pregnant with my daughter. My husband and I have said many times that our son's best therapists are his younger brother and sister. They have given us many opportunities to teach turn taking, respect, and communication. I know that it's not easy to deal with a recent diagnosis while being pregnant, but I hope you are able to enjoy this pregnancy. My daughter is now 15 months, a great age.

Have fun at the zoo!

mom to Bobby, Ian, and Yoli

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

From: tracey

Sent: Saturday, August 21, 2004 6:15 PM

Subject: [ ] new member

hi, I'm Tracey and my family is in Strongsville. we have 2 sons (and a daughter due on Christmas Day), the youngest of which was just diagnosed this Spring as being autistic. is 3 years old and the lady we just finished working with at Beechbrook said that he is a puzzle because so many of the things that they expect to see in an autistic child just don't seem to be there. there are enough cues that tell them that he is though. I was thrilled to find this group the other day. I am still kind of in that acceptance one minute/denial the next minute phase and just when I think I have a grip on it and am fine with things I have been falling apart. who knows, maybe it's the pregnancy hormones I am very bewildered as to how to communicate with him at times. there are times when I wonder if he has a clue as to what I am saying to him, but then there are moments-usually when he is misbehaving and has been caught in the act-that I know darn well that he knows what I am saying because he laughs at me and runs away. I look forward to learning to find alternate ways to deal with situations with him and to teach him how to communicate with us. it's funny how the little things would make me feel so amazing right now-I told his OT last week that I want him to be able to blow out his own birthday candles next May, or to understand how to give me a "real" kiss on the cheek, or even to say Dad or his name. there I go getting emotional again...anyhow, I look forward to learning from all of your experiences and to getting to know you folks. thanks for accepting us into your group and the kids and I look forward to meeting you at the zoo on Monday! Tracey, Franc, DJ, and

[Guest guest]

Hi Tracey,

Will be looking forward to meeting you at the zoo tomarrow.

It does sound like your son does have autism with the description you mentioned. Alot of physician's don't know the details on autism quite yet. They mostly go with the old signs of autism. My son is alot like your son with the behaviors. I will assure you though that your son is in good hands and should be able to come along well with OT and speech. My son has made good progress over the last few years. He knows how to blow out candles, can say Daddy and rides his tricycle very well. He is doing so many things that we didn't try to imagine after being diagnosed. He can even blow up a balloon some. He even gets in our van now and buckles his own seat belt. He is 5 years old.

Well, I have to search the net on game meats to help expand my son's diet. So see you tomarrow.

My Best,

n

216-663-1453

bubs04@... writes:

OT last week that I want him to be able to blow out his own birthday candles next May, or to understand how to give me a "real" kiss on the cheek, or even to say Dad or his name. there I go getting emotional again...anyhow, I look forward to learning from all of your experiences and to getting to know you folks. thanks for accepting us into your group and the kids and I look forward to meeting you at the zoo on Monday! Tracey, Franc, DJ, and

[Guest guest]

,

I hope that your training with the Xolair shots went well. Traffic

on the board has been light for the past week or so, but I'm sure

many members will be glad to put in their two cents worth.

As I indicated on the asthma board, Xolair has been great for me.

Some don't get as good a response, and for others, it takes a few

months to see any results.

Good luck.

Greg

> Hi, I'm a new member I am a member of the asthma group. I was told

about three weeks ago by an allergist I was referred to about

Xolair. She believes it will help me alot. I began to ask questions

in the asthma group and got no answers. My first shot and training

session will be tomorrow. I am very nervous about it. A member of

the asthma group wrote yesterday and mentioned this group so here I

am very nervous and unsure. I guess the biggest question I have is

how good is this new med and is it worth the injections? I welcome

any information I can get. I have read all the information the

doctor gave me about it. But I'm looking for the type of information

only someone on this drug can provide. I have real bad allergies I'm

also going through allergy shots twice a week. The Xolair is

prescribed to me for 300mg every two weeks.

>

>

>

> __________________________________________________________________

> Switch to Netscape Internet Service.

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[Guest guest]

Dear Salty Dog

Welcome. You have come to the right place for information.

Get a comfortable chair and free up an hour or two and read the archives.

The posters I would search for in the archives are : holistic@visi,

new_man85@hotmail , mllebondgirl007@, janne@rock3 and a gentleman named Jay

Townsend, whose email address escapes me. IF you read all their posts as well as

whatever else catches your eye you will gain quite an education and ALL of your

questions will be answered.

BTW Janne (aka Mama) also posts under another email address. Wittfamily, I

think. Anyway, search in the archives for " nz " There cannot be too many people

posting from New Zealand.

Start there and good luck.

(Atlanta)

[Guest guest]

Hi Sooey, This is Steph in VA. I was dx'd with RA in 1999 when I was 22. Welcome to the group. Here are some answers to your questions: 1. People can have mild, moderate & severe RA. Sometimes the severity is tied into how long your disease progresses without treatment. I have severe RA that is controlled with lots of meds. 2. Treatment is important. The longer your RA is untreated, the more uncontrollable it becomes and then it is less likely that some medications can help. 3. Treatments vary based on severity & , in your case, other conditions. Some of meds usually prescribed may not work for you due to you other health problems. 4. For prednisone, I was started at 80 mg when I was first dx'd. Now I take 2 mg a day. I want to completely stop the prednisone but I currently drive 1.5 hours each way to work so changing meds isn't a

good idea. 5. Due to a history of cancer & MS in my family, I had to get an MRI, CT scan and several X-rays to rule out MS and tumors. After those I get blood tests every 3 months & a bone density scan every 2 years. 6. Some people achieve improvement through cutting out glutens and nightshade veggies. The only diet change I've made is I each as much organic food as I can (I put enough chemicals in my body). I hope that helps. Take care, Steph in VA

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

"Never underestimate the power of a small, dedicated group of people to change the world -- indeed, it's the only thing that ever has." (Margaret Mead)

AmeriCorps Alums -- We're Still Getting Things Done

Everyone is raving about the all-new beta.

[Guest guest]

I agree with ’s answer and

I find her to be very reliable. I’m 79, old enough to be her

grandfather, but she was already on this board when I joined and she helped me

a lot in learning about RA. However, I’ll give my own answers that

I think will agree with but might give a different slant.

Are there different levels of severity to RA?

RA varies greatly in severity and response to medications. Some

people have mild RA and respond well to medications while others have severe RA

and have a hard time finding the right treatment to help them.

I know it is considered to be an auto immune disease

and that it is also progressive. Does everyone need to be treated?

Yes and most people use conventional Western RA medications but some have

good results with antibiotic treatment using tetracycline derivatives, others

benefit from changes in diet and nutrition, Chinese medicine including

acupuncture, or chiropractics but the wrong chiropractor can cripple you.

If RA goes untreated most people wind up bedridden or at least in a

wheelchair. Early and aggressive treatment is necessary.

What is the most common treatment for RA?

Well, I pretty well answered that above. I’ve only been on conventional

Western medications but if I had it to do over again I think I would try to

start on both Western medications and antibiotic therapy at the same time

hoping that one or the other would work. All of the treatments can take

considerable time to become effective so it is best to use early, aggressive

treatment and then when the RA is controlled try to back off.

If the treatment is prednisone, what are the doses and

what would be considered the maintenance dose? I was

just about to talk about Prednisone in the last question when I noticed that

this was a better place for it. Prednisone is a strong anti-inflammatory

that usually acts quickly to ease the symptoms of RA but is not very effective

in stopping damage, and long-term use at high amounts can cause bad

problems. It is best not to use Prednisone at all but you should use

however much is necessary to allow you to function as you really need to.

That does not mean taking enough to really make you feel good. Doctors

have different limits for what they think is an allowable long-term dose and I

think most feel that 5 mg daily is acceptable but they would prefer not using

any. I started at 40 mg daily and it took about 18 months to reduce it to

zero.

What other tests can I look forward to having? MRI?

I think most doctors use x-rays of the hands and feet to have a reference

for comparison if they get other x-rays. Usually RA affects the smaller

joints (hands and feet) but can also affect the larger joints (elbows,

shoulders, knees, hips) as well as any other joints in the body including

joints most of us don’t even realize we have. Other blood tests

include anti-ccp to check for RA antibodies and both SED rate and CRP to check

for general inflammation in the body. None of the blood tests can

definitively prove or rule out RA so it can be hard to diagnose.

Are there foods that I should be avoiding?

Some people swear by diet changes as sure cures for RA but unfortunately

there is no agreement about what diet change provides the cure. I believe

that some people have an adverse reaction to specific foods or food

groups. People can try to remove each food group one at a time to see if

they get help or they can do what is called an elimination diet by eating only

foods that are regarded as unlikely to cause problems till you get your system

cleaned out. If you feel better, then some food group or groups are

likely to be responsible for at least some of your problems. Then you add

food groups one at a time, wait a week or so, and if you don’t feel worse

then add another food group. The site below has information on this

system.

http://www.drcranton.com/elimination_diet.htm

What would be the best source of info on the web for

me to check out? I’ve collected a bunch of

references and hear are a few.

General information about RA

http://www.arc.org.uk/about_arth/booklets/6033/6033.htm

First Visit to Rheumatologist

http://arthritis.about.com/cs/docpad/a/rheumatologist.htm

Spoon Theory – explaining RA to others

http://www.butyoudontlooksick.com/spoons.htm

Drugs and interactions

http://www.arthritis.org/conditions/DrugGuide/index.asp

http://www.drugdigest.org/DD/Home

http://www.drugs.com/

http://www.mayoclinic.com/health/drug-information/DrugHerbIndex

Lab Tests

http://arthritiscentral.com/html/testslab.htm

http://www.labtestsonline.org

Kinds of Arthritis and brief explanation of many of them

http://www.pharmacycenter.org/r/2006/970/

Financial assistance

https://www.pparx.org/Intro.php

RA treatments

http://www.hopkins-arthritis.som.jhmi.edu/rheumatoid/rheum_treat.html

Antibiotic Therapy - Road Back Foundation

http://www.roadback.org

Aggressive Treatment

http://rheumatology.hss.edu/phys/musings/pagetStandardsRA.asp

I hope some of this helps. God bless.

Harold

From:

Rheumatoid Arthritis

[mailto:Rheumatoid Arthritis ] On

Behalf Of mcsooey

Sent: Saturday, November 11, 2006

8:35 AM

To:

Rheumatoid Arthritis

Subject:

New Member

Hi Kids,

I just joined this group yesterday. I'm so new that I haven't even

lurked, so I'm not even sure if this is a group that might be right

for me. Let's find out...

I was just dx with RA on Wednesday of this week. It was a total

surprise...SURPRISE!!! My Pulmonologist was doing some blood work

and since I had told him that I have joint pain that is starting to

be noticiable to me, he decided to also look for RA. I see a Pulmo

because I also have sarcoidosis. It is in my lungs, hilar lymph

nodes and trechea. In addition to lung damage Sarcoid also causes

joint pain, so the test for RA was really just to rule it out.

But...BINGO! I have nothing else to go on but the report from the

blood work. It was given to me over the phone and I did not think

to ask for any 'numbers' shown on the report. The only info I have

is that 'it' shows that I have medium to 'moderate' RA. He said I

should see a specialist but that it could wait until after the first

of the year. I don't know what any of this means. I have just

started doing my research on this new development and this group is

one of my first stops in that quest. I belong to a few other health

related support groups here at for some other issues and I

know them to be valuable sources of information.

So here are some questions...

Are there diferent levels of severity to RA? I know it is

considered to be an auto immune desease and that it is also

progressive. Does everyone need to be treated? What is the most

common treatment for RA? If the treatment is prednisone, what are

the doses and what would be considered the maintenance dose? What

other tests can I look forward to having? MRI? Are there foods

that I should be avoiding? What would be the best source of info on

the web for me to check out?

I am a 56...almost 57 year old white female. In addition to RA and

Sarcoidosis, dx in '03, I also have Ostioperosis, dx this past May,

for which I take Acotnel and I assume I also have Ostio

Arthritis...my Mother had it, had two knee replacements. I now live

on the shoreline of CT but will be moving to Cape Cod, MA

this

winter.

In addition to research here on the web, what else should I be doing

and who should I be talking to? Thanks Kids. this is all very new

to me and I'm having a difficult time even believing that it's

real.

These are all questions you have heard and answered before and I'm

sorry. But, I also consider you to be the experts...most of you

have been where I am now. You have great knowledge, you have

learned the hard way. For me, I have so much ahead...my journey has

just started...

Thanks, Kids.

Sooey

[Guest guest]

Hi Steph,

Oh My, Yes, your response was exactly what I needed to get me

started. The answers you gave are a great help to me. Thank you

and Thank you for the welcome.

I have several problems re: this new dx of RA. My other medical

issues complicate the picture a bit. Some of the treatments for my

Ostioporosis and my Sarcoidosis are in conflict with each other, but

it sounds like the treatment for the RA and the Sarcoid can be

exactly the same. Both are inflamitory deseases and both are

treated with Methatroxate (sp) and/or predisone. I'm not a good

candidate for prednisone since it can cause thinning of bones which

is in conflict with my Ostioporosis. My Sarcoid is cronic but so

far it has not been bad enough to treat. One reason for that is

that the first treatment for Sarcoid is steroids and we all know the

risk that goes along with those. But, if I need to be treated for

the RA it could be the 'two birds with one stone' sort of thing.

From what you tell me, everyone who has RA needs to be treated...did

I get that correct?

Another issues I have is, when and where to look for a specialist.

I could go right now to a local Dr. here in CT only to have to

change in January when I move to the Cape. Medical avalability is

not the best on Cape Cod. I'm sure I'll have to drive off Cape to

Boston to find good Dr's. (Please...someone from Cape Cod butt in

here and tell me I'm wrong!...) One thing is sure, I need to find

Dr's who will talk to each other. I need to find a good GP who will

be able to keep track of what every Dr. is prescribing as well as

tests and procedures.

You were dx at age 22? Oh My. I am so greatful that if I had to

have it, it waited until I was 56 to show itself. My life was/has

been fit and healthy until three years ago. I'm sorry you have to

spend so much of your day in your car driving to and from work. But

I'll bet that drive time serves as a good baromiter as to how well

your treatment is working. I hope you really like your job.

Thanks again, Steph. You have been a great help to me in my search

for answers.

I hope your day has been a good one, pain free and happy.

Sooey

>

> Hi Sooey,

> This is Steph in VA. I was dx'd with RA in 1999 when I was

22. Welcome to the group.

> Here are some answers to your questions:

> 1. People can have mild, moderate & severe RA. Sometimes the

severity is tied into how long your disease progresses without

treatment. I have severe RA that is controlled with lots of meds.

> 2. Treatment is important. The longer your RA is untreated, the

more uncontrollable it becomes and then it is less likely that some

medications can help.

> 3. Treatments vary based on severity & , in your case, other

conditions. Some of meds usually prescribed may not work for you due

to you other health problems.

> 4. For prednisone, I was started at 80 mg when I was first dx'd.

Now I take 2 mg a day. I want to completely stop the prednisone but

I currently drive 1.5 hours each way to work so changing meds isn't

a good idea.

> 5. Due to a history of cancer & MS in my family, I had to get an

MRI, CT scan and several X-rays to rule out MS and tumors. After

those I get blood tests every 3 months & a bone density scan every 2

years.

> 6. Some people achieve improvement through cutting out glutens

and nightshade veggies. The only diet change I've made is I each as

much organic food as I can (I put enough chemicals in my body).

>

> I hope that helps.

> Take care,

> Steph in VA

>

>

>

>

>

>

> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

> " Never underestimate the power of a small, dedicated group of

people to change the world -- indeed, it's the only thing that ever

has. " (Margaret Mead)

>

> AmeriCorps Alums -- We're Still Getting Things Done

>

>

>

>

>

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

> Everyone is raving about the all-new beta.

>

[Guest guest]

heh, I was diagnosed at 14....

Sent from my treo

[Guest guest]

I live in northern MA.......... A good rheumetolgist is very hard to find! I can recommend the one that I go to. Dr. Dellaripa at Brigham Women's Hospital.

http://www.brighamandwomens.org/mdSearch/MedicalProfessionalDetail.aspx?MPR=11088

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

From: mcsooey

Date: 11/11/2006 6:10:42 PM

Rheumatoid Arthritis

Subject: Re: New Member

Hi Steph,Oh My, Yes, your response was exactly what I needed to get me started. The answers you gave are a great help to me. Thank you and Thank you for the welcome.I have several problems re: this new dx of RA. My other medical issues complicate the picture a bit. Some of the treatments for my Ostioporosis and my Sarcoidosis are in conflict with each other, but it sounds like the treatment for the RA and the Sarcoid can be exactly the same. Both are inflamitory deseases and both are treated with Methatroxate (sp) and/or predisone. I'm not a good candidate for prednisone since it can cause thinning of bones which is in conflict with my Ostioporosis. My Sarcoid is cronic but so far it has not been bad enough to treat. One reason for that is that the first treatment for Sarcoid is steroids and we all know the risk that goes along with those. But, if I need to be treated for the RA it could be the 'two birds with one stone' sort of thing. From what you tell me, everyone who has RA needs to be treated...did I get that correct?Another issues I have is, when and where to look for a specialist. I could go right now to a local Dr. here in CT only to have to change in January when I move to the Cape. Medical avalability is not the best on Cape Cod. I'm sure I'll have to drive off Cape to Boston to find good Dr's. (Please...someone from Cape Cod butt in here and tell me I'm wrong!...) One thing is sure, I need to find Dr's who will talk to each other. I need to find a good GP who will be able to keep track of what every Dr. is prescribing as well as tests and procedures. You were dx at age 22? Oh My. I am so greatful that if I had to have it, it waited until I was 56 to show itself. My life was/has been fit and healthy until three years ago. I'm sorry you have to spend so much of your day in your car driving to and from work. But I'll bet that drive time serves as a good baromiter as to how well your treatment is working. I hope you really like your job. Thanks again, Steph. You have been a great help to me in my search for answers. I hope your day has been a good one, pain free and happy.Sooey >> Hi Sooey,> This is Steph in VA. I was dx'd with RA in 1999 when I was 22. Welcome to the group. > Here are some answers to your questions:> 1. People can have mild, moderate & severe RA. Sometimes the severity is tied into how long your disease progresses without treatment. I have severe RA that is controlled with lots of meds.> 2. Treatment is important. The longer your RA is untreated, the more uncontrollable it becomes and then it is less likely that some medications can help.> 3. Treatments vary based on severity & , in your case, other conditions. Some of meds usually prescribed may not work for you due to you other health problems. > 4. For prednisone, I was started at 80 mg when I was first dx'd. Now I take 2 mg a day. I want to completely stop the prednisone but I currently drive 1.5 hours each way to work so changing meds isn't a good idea. > 5. Due to a history of cancer & MS in my family, I had to get an MRI, CT scan and several X-rays to rule out MS and tumors. After those I get blood tests every 3 months & a bone density scan every 2 years.> 6. Some people achieve improvement through cutting out glutens and nightshade veggies. The only diet change I've made is I each as much organic food as I can (I put enough chemicals in my body).> > I hope that helps.> Take care,> Steph in VA> > > > > > > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~> "Never underestimate the power of a small, dedicated group of people to change the world -- indeed, it's the only thing that ever has." (Margaret Mead)> > AmeriCorps Alums -- We're Still Getting Things Done> > > > > > ---------------------------------> Everyone is raving about the all-new beta.>

[Guest guest]

Hi Harold,

Thank you so very much for all of this information. You really took

some time with it and I appreciate it greatly.

I have looked at a few of the links you included in your post and I

can see that they will be very helpful to me. I had heard about the

nightshade veggies that Steph mentioned to me, but I did not know

about the possible antibiotic treatment. That is very interesting

to me. It has been suggested that Sarcoidosis could also have some

bacterial causes and many people choose an antibiotic treatment

plan. Results are mixed and the treatment is not santioned by most

of the medical community, but it's out there just the same.

I thank you Harold. You have given me your time and your

considerstion. Both are a true gift.

Be well.

Sooey

>

> I agree with 's answer and I find her to be very

reliable. I'm 79,

> old enough to be her grandfather, but she was already on this

board when I

> joined and she helped me a lot in learning about RA. However,

I'll give my

> own answers that I think will agree with but might give a

> different slant.

>

>

>

> Are there different levels of severity to RA? RA varies greatly

in severity

> and response to medications. Some people have mild RA and respond

well to

> medications while others have severe RA and have a hard time

finding the

> right treatment to help them.

>

>

>

> I know it is considered to be an auto immune disease and that it

is also

> progressive. Does everyone need to be treated? Yes and most

people use

> conventional Western RA medications but some have good results with

> antibiotic treatment using tetracycline derivatives, others

benefit from

> changes in diet and nutrition, Chinese medicine including

acupuncture, or

> chiropractics but the wrong chiropractor can cripple you. If RA

goes

> untreated most people wind up bedridden or at least in a

wheelchair. Early

> and aggressive treatment is necessary.

>

>

>

> What is the most common treatment for RA? Well, I pretty well

answered that

> above. I've only been on conventional Western medications but if

I had it

> to do over again I think I would try to start on both Western

medications

> and antibiotic therapy at the same time hoping that one or the

other would

> work. All of the treatments can take considerable time to become

effective

> so it is best to use early, aggressive treatment and then when the

RA is

> controlled try to back off.

>

>

>

> If the treatment is prednisone, what are the doses and what would

be

> considered the maintenance dose? I was just about to talk about

Prednisone

> in the last question when I noticed that this was a better place

for it.

> Prednisone is a strong anti-inflammatory that usually acts quickly

to ease

> the symptoms of RA but is not very effective in stopping damage,

and

> long-term use at high amounts can cause bad problems. It is best

not to use

> Prednisone at all but you should use however much is necessary to

allow you

> to function as you really need to. That does not mean taking

enough to

> really make you feel good. Doctors have different limits for what

they

> think is an allowable long-term dose and I think most feel that 5

mg daily

> is acceptable but they would prefer not using any. I started at

40 mg daily

> and it took about 18 months to reduce it to zero.

>

>

>

> What other tests can I look forward to having? MRI? I think most

doctors

> use x-rays of the hands and feet to have a reference for

comparison if they

> get other x-rays. Usually RA affects the smaller joints (hands

and feet)

> but can also affect the larger joints (elbows, shoulders, knees,

hips) as

> well as any other joints in the body including joints most of us

don't even

> realize we have. Other blood tests include anti-ccp to check for

RA

> antibodies and both SED rate and CRP to check for general

inflammation in

> the body. None of the blood tests can definitively prove or rule

out RA so

> it can be hard to diagnose.

>

>

>

> Are there foods that I should be avoiding? Some people swear by

diet

> changes as sure cures for RA but unfortunately there is no

agreement about

> what diet change provides the cure. I believe that some people

have an

> adverse reaction to specific foods or food groups. People can try

to remove

> each food group one at a time to see if they get help or they can

do what is

> called an elimination diet by eating only foods that are regarded

as

> unlikely to cause problems till you get your system cleaned out.

If you

> feel better, then some food group or groups are likely to be

responsible for

> at least some of your problems. Then you add food groups one at a

time,

> wait a week or so, and if you don't feel worse then add another

food group.

> The site below has information on this system.

>

> http://www.drcranton.com/elimination_diet.htm

>

>

>

> What would be the best source of info on the web for me to check

out? I've

> collected a bunch of references and hear are a few.

>

> General information about RA

>

> http://www.arc.org.uk/about_arth/booklets/6033/6033.htm

>

>

>

> First Visit to Rheumatologist

>

> http://arthritis.about.com/cs/docpad/a/rheumatologist.htm

>

>

>

> Spoon Theory - explaining RA to others

>

> http://www.butyoudontlooksick.com/spoons.htm

>

>

>

> Drugs and interactions

>

> http://www.arthritis.org/conditions/DrugGuide/index.asp

>

> http://www.drugdigest.org/DD/Home

>

> http://www.drugs.com/

>

> http://www.mayoclinic.com/health/drug-information/DrugHerbIndex

>

>

>

> Lab Tests

>

> http://arthritiscentral.com/html/testslab.htm

>

> http://www.labtestsonline.org <http://www.labtestsonline.org/>

>

>

>

> Kinds of Arthritis and brief explanation of many of them

>

> http://www.pharmacycenter.org/r/2006/970/

>

>

>

> Financial assistance

>

> https://www.pparx.org/Intro.php

>

>

>

> RA treatments

>

> http://www.hopkins-

arthritis.som.jhmi.edu/rheumatoid/rheum_treat.html

>

>

>

> Antibiotic Therapy - Road Back Foundation

>

> http://www.roadback.org <http://www.roadback.org/>

>

>

>

> Aggressive Treatment

>

> http://rheumatology.hss.edu/phys/musings/pagetStandardsRA.asp

>

>

>

> I hope some of this helps. God bless.

>

>

>

> Harold

>

>

>

> _____

>

> From: Rheumatoid Arthritis

> [mailto:Rheumatoid Arthritis ] On Behalf Of mcsooey

> Sent: Saturday, November 11, 2006 8:35 AM

> Rheumatoid Arthritis

> Subject: New Member

>

>

>

> Hi Kids,

>

> I just joined this group yesterday. I'm so new that I haven't even

> lurked, so I'm not even sure if this is a group that might be

right

> for me. Let's find out...

>

> I was just dx with RA on Wednesday of this week. It was a total

> surprise...SURPRISE!!! My Pulmonologist was doing some blood work

> and since I had told him that I have joint pain that is starting

to

> be noticiable to me, he decided to also look for RA. I see a Pulmo

> because I also have sarcoidosis. It is in my lungs, hilar lymph

> nodes and trechea. In addition to lung damage Sarcoid also causes

> joint pain, so the test for RA was really just to rule it out.

> But...BINGO! I have nothing else to go on but the report from the

> blood work. It was given to me over the phone and I did not think

> to ask for any 'numbers' shown on the report. The only info I have

> is that 'it' shows that I have medium to 'moderate' RA. He said I

> should see a specialist but that it could wait until after the

first

> of the year. I don't know what any of this means. I have just

> started doing my research on this new development and this group

is

> one of my first stops in that quest. I belong to a few other

health

> related support groups here at for some other issues and I

> know them to be valuable sources of information.

>

> So here are some questions...

> Are there diferent levels of severity to RA? I know it is

> considered to be an auto immune desease and that it is also

> progressive. Does everyone need to be treated? What is the most

> common treatment for RA? If the treatment is prednisone, what are

> the doses and what would be considered the maintenance dose? What

> other tests can I look forward to having? MRI? Are there foods

> that I should be avoiding? What would be the best source of info

on

> the web for me to check out?

>

> I am a 56...almost 57 year old white female. In addition to RA and

> Sarcoidosis, dx in '03, I also have Ostioperosis, dx this past

May,

> for which I take Acotnel and I assume I also have Ostio

> Arthritis...my Mother had it, had two knee replacements. I now

live

> on the shoreline of CT but will be moving to Cape Cod, MA this

> winter.

>

> In addition to research here on the web, what else should I be

doing

> and who should I be talking to? Thanks Kids. this is all very new

> to me and I'm having a difficult time even believing that it's

> real.

>

> These are all questions you have heard and answered before and I'm

> sorry. But, I also consider you to be the experts...most of you

> have been where I am now. You have great knowledge, you have

> learned the hard way. For me, I have so much ahead...my journey

has

> just started...

>

> Thanks, Kids.

>

> Sooey

>

[Guest guest]

Dear Sooey- There are some amazing resources in Mass. I used to live there and they have the very best Rheumatologists around. They also have plenty of support groups with a chapter office through the arthritis foundation. www.arthritisfoundation.org. That site will answer alot of your questions with regard to treatments, tests etc. I will see which Rheumatologist practice there. Its very important to get your medical team together and share information between PCP, Pulmo, Rheumy, etc. Yours, Deborah in Maine. RA since 1994.

On 11/11/06, mcsooey <mcsooey@...> wrote:

Hi Kids,I just joined this group yesterday. I'm so new that I haven't even lurked, so I'm not even sure if this is a group that might be right for me. Let's find out...I was just dx with RA on Wednesday of this week. It was a total surprise...SURPRISE!!! My Pulmonologist was doing some blood work and since I had told him that I have joint pain that is starting to be noticiable to me, he decided to also look for RA. I see a Pulmo because I also have sarcoidosis. It is in my lungs, hilar lymph nodes and trechea. In addition to lung damage Sarcoid also causes joint pain, so the test for RA was really just to rule it out. But...BINGO! I have nothing else to go on but the report from the blood work. It was given to me over the phone and I did not think to ask for any 'numbers' shown on the report. The only info I have is that 'it' shows that I have medium to 'moderate' RA. He said I should see a specialist but that it could wait until after the first of the year. I don't know what any of this means. I have just started doing my research on this new development and this group is one of my first stops in that quest. I belong to a few other health related support groups here at for some other issues and I know them to be valuable sources of information.

So here are some questions...Are there diferent levels of severity to RA? I know it is considered to be an auto immune desease and that it is also progressive. Does everyone need to be treated? What is the most common treatment for RA? If the treatment is prednisone, what are the doses and what would be considered the maintenance dose? What other tests can I look forward to having? MRI? Are there foods that I should be avoiding? What would be the best source of info on the web for me to check out?I am a 56...almost 57 year old white female. In addition to RA and Sarcoidosis, dx in '03, I also have Ostioperosis, dx this past May, for which I take Acotnel and I assume I also have Ostio Arthritis...my Mother had it, had two knee replacements. I now live on the shoreline of CT but will be moving to Cape Cod, MA this winter.In addition to research here on the web, what else should I be doing and who should I be talking to? Thanks Kids. this is all very new to me and I'm having a difficult time even believing that it's real. These are all questions you have heard and answered before and I'm sorry. But, I also consider you to be the experts...most of you have been where I am now. You have great knowledge, you have learned the hard way. For me, I have so much ahead...my journey has just started...

Thanks, Kids.Sooey

[Guest guest]

Call them. Thats what I did. They help amazingly. I swear by arthritis today magazine also. http://www.arthritis.org/resources/default.asp

On 11/12/06, Deborah Bargad <dbargad@...> wrote:

Dear Sooey- There are some amazing resources in Mass. I used to live there and they have the very best Rheumatologists around. They also have plenty of support groups with a chapter office through the arthritis foundation. www.arthritisfoundation.org. That site will answer alot of your questions with regard to treatments, tests etc. I will see which Rheumatologist practice there. Its very important to get your medical team together and share information between PCP, Pulmo, Rheumy, etc. Yours, Deborah in Maine. RA since 1994.

On 11/11/06, mcsooey <mcsooey@...> wrote:

Hi Kids,I just joined this group yesterday. I'm so new that I haven't even lurked, so I'm not even sure if this is a group that might be right for me. Let's find out...I was just dx with RA on Wednesday of this week. It was a total surprise...SURPRISE!!! My Pulmonologist was doing some blood work and since I had told him that I have joint pain that is starting to be noticiable to me, he decided to also look for RA. I see a Pulmo because I also have sarcoidosis. It is in my lungs, hilar lymph nodes and trechea. In addition to lung damage Sarcoid also causes joint pain, so the test for RA was really just to rule it out. But...BINGO! I have nothing else to go on but the report from the blood work. It was given to me over the phone and I did not think to ask for any 'numbers' shown on the report. The only info I have is that 'it' shows that I have medium to 'moderate' RA. He said I should see a specialist but that it could wait until after the first of the year. I don't know what any of this means. I have just started doing my research on this new development and this group is one of my first stops in that quest. I belong to a few other health related support groups here at for some other issues and I know them to be valuable sources of information. So here are some questions...Are there diferent levels of severity to RA? I know it is considered to be an auto immune desease and that it is also progressive. Does everyone need to be treated? What is the most common treatment for RA? If the treatment is prednisone, what are the doses and what would be considered the maintenance dose? What other tests can I look forward to having? MRI? Are there foods that I should be avoiding? What would be the best source of info on the web for me to check out?I am a 56...almost 57 year old white female. In addition to RA and Sarcoidosis, dx in '03, I also have Ostioperosis, dx this past May, for which I take Acotnel and I assume I also have Ostio Arthritis...my Mother had it, had two knee replacements. I now live on the shoreline of CT but will be moving to Cape Cod, MA this winter.In addition to research here on the web, what else should I be doing and who should I be talking to? Thanks Kids. this is all very new to me and I'm having a difficult time even believing that it's real. These are all questions you have heard and answered before and I'm sorry. But, I also consider you to be the experts...most of you have been where I am now. You have great knowledge, you have learned the hard way. For me, I have so much ahead...my journey has just started... Thanks, Kids.Sooey

[Guest guest]

Hi Deborah,

Thank you for your reply. Yes, you are correct in saying that I

need to be with Dr's who communicate with each other. That is one

of my prime concerns. It's also one of my prime worries. I have a

wonderful PC now who has been my Dr for over 20 years. I also have

a wonderful Pulmo who is just 30 minutes away in New Haven. The

thought of leaving this support network at this point to start bran

new relationships with a new PC, Pulmo and needing to add a

Rheumatologist to the list is all a bit overwhelming. I would love

a 4 month grace period...hold off listing the house for a while so I

can get my feet back under me. I find that I am turning into a

emotional mess at this point.

But anyway, thank you for responding. I'm very sure there are

wonderful Rheumatologists in Boston. I'll just have to make sure I

coordinate my trips off Cape so I can see two specialists in one

trip when ever possible. It's not the end of the world and I'm a

big girl...I can do it.

I hope your weather up in Maine on this Sunday is better than what

we have in CT right now. We are socked in with fog and rain. But,

it's warm.

Thanks again, Deborah. Be well.

Sooey

> > >

> > > Hi Kids,

> > >

> > > I just joined this group yesterday. I'm so new that I haven't

even

> > > lurked, so I'm not even sure if this is a group that might be

right

> > > for me. Let's find out...

> > >

> > > I was just dx with RA on Wednesday of this week. It was a total

> > > surprise...SURPRISE!!! My Pulmonologist was doing some blood

work

> > > and since I had told him that I have joint pain that is

starting to

> > > be noticiable to me, he decided to also look for RA. I see a

Pulmo

> > > because I also have sarcoidosis. It is in my lungs, hilar lymph

> > > nodes and trechea. In addition to lung damage Sarcoid also

causes

> > > joint pain, so the test for RA was really just to rule it out.

> > > But...BINGO! I have nothing else to go on but the report from

the

> > > blood work. It was given to me over the phone and I did not

think

> > > to ask for any 'numbers' shown on the report. The only info I

have

> > > is that 'it' shows that I have medium to 'moderate' RA. He

said I

> > > should see a specialist but that it could wait until after the

first

> > > of the year. I don't know what any of this means. I have just

> > > started doing my research on this new development and this

group is

> > > one of my first stops in that quest. I belong to a few other

health

> > > related support groups here at for some other issues and

I

> > > know them to be valuable sources of information.

> > >

> > > So here are some questions...

> > > Are there diferent levels of severity to RA? I know it is

> > > considered to be an auto immune desease and that it is also

> > > progressive. Does everyone need to be treated? What is the most

> > > common treatment for RA? If the treatment is prednisone, what

are

> > > the doses and what would be considered the maintenance dose?

What

> > > other tests can I look forward to having? MRI? Are there foods

> > > that I should be avoiding? What would be the best source of

info on

> > > the web for me to check out?

> > >

> > > I am a 56...almost 57 year old white female. In addition to RA

and

> > > Sarcoidosis, dx in '03, I also have Ostioperosis, dx this past

May,

> > > for which I take Acotnel and I assume I also have Ostio

> > > Arthritis...my Mother had it, had two knee replacements. I now

live

> > > on the shoreline of CT but will be moving to Cape Cod, MA this

> > > winter.

> > >

> > > In addition to research here on the web, what else should I be

doing

> > > and who should I be talking to? Thanks Kids. this is all very

new

> > > to me and I'm having a difficult time even believing that it's

> > > real.

> > >

> > > These are all questions you have heard and answered before and

I'm

> > > sorry. But, I also consider you to be the experts...most of you

> > > have been where I am now. You have great knowledge, you have

> > > learned the hard way. For me, I have so much ahead...my

journey has

> > > just started...

> > >

> > > Thanks, Kids.

> > >

> > > Sooey

> > >

> > >

> > >

> >

> >

>

[Guest guest]

Dear Bet- RA is a serious disease and serious medication is needed to treat it. Medication can be an issue but living with pain is not helping your quality of life. Get the inflammation under control with meds first by seeing a Rheumatologist. Ra leads to OA which is deterioratioin and disintegration of the bone itself. RA is an immune disease and one of many connective tissue diseases. You may have deterioration of the spine that is NOT related to your accident but from RA also. Quality of life is key. There is no trade off. Pain leads to loss of quality of life which causes depression. It has psychological effects as well. Your doctor will most likely start you on the standard (conservative) medications. Be more afraid of the disease than the cure at this point. Fight it as aggressively as possible. RA is turned on by a dormant genetic glitch and anything can trigger it. It cant be prevented, but it can be treated. First and foremost. Be your OWN advocate. Research the wealth of resources online. We only fear the unknown. Make yourself in the KNOW and fear will not be a problem. I have had Ra since 1994 and am now 46. I have been fought for quality of life and am winning one day at a time. Your pain is very real and this disease is very real. Impact Exercise is counter productive for people with RA, but low or no impact to stress your joints as well as pool exericse and a good healthy diet is key. Certain foods are triggers. Make sure you get full sets of xrays to check for disease progression. We are all here as resources for you. Hugs, Deborah

3/1/07, Bet <wyopoodlemom3@...> wrote:

I have had a lot of pain for years.. Mostly my back from

A bad auto accident..

It seem a lot worse lately so my doctor did some blood tests

Today I got a phone call that the test were positive for

Rheumatoid arthritis.. That hit me hard I have always be

Heathy except for my back pain and joint pain.. They want

Me to see a specialist in Salt Lake City which is 300 miles

From where I live in Wyoming..

I did some research on the net and it said that meds like

Ibrophen, asprin and naprosen like what I already take

Is what they subscribe.. And the other meds that are more long term meds to maybe keep it from getting worse have

Terrible side effects..

I am not sure what to do.. I need to do more excersise and loose weight..

I am in a lot of pain the last 2 weeks.. I was on anti depressants for a long time.. And it seems like when I stopped the pain seemed to feel worse.. I don't now if there is a connection.. That perhaps the medication some how hid the pain..

I am 66 yrs old. And my husband and I have custody of

2 grandchildren 14 and 10..

As soon as the weather is better I think I will start going for walks with my chunky poodle who could use the walk also lol.

Well sorry to be so wordy but I am a little confused on what to do.. And maybe what dietary things that may help..

Bet

[Guest guest]

Hi Bet,

My name is Gloria and I am from Ok. I was dxd with ra in 2004. I agree with Deb as far as the exercise goes. My kids are always telling me to get some exercise and I would get better. They are right, but you have to do low impact or water exercise because if you do the wrong kind of exercise you will do your body more harm than good. My rheumy says that she can write me a script for a hot tub, and my insurance won't pay for it , but I could write it off my taxes. I am sure considering it.

This group has been a God send for me. They are all very compassionate and informative. When I am feeling depressed about all this, I get on here and whine and everyone understands. Anyway, welcome to the group sweetie. We are all here to listen and help.

Hugs from Oklahoma, Gloria> > > I have had a lot of pain for years.. Mostly my back from> > A bad auto accident..> > It seem a lot worse lately so my doctor did some blood tests> > Today I got a phone call that the test were positive for> > Rheumatoid arthritis.. That hit me hard I have always be> > Heathy except for my back pain and joint pain.. They want> > Me to see a specialist in Salt Lake City which is 300 miles> > From where I live in Wyoming..> > I did some research on the net and it said that meds like> > Ibrophen, asprin and naprosen like what I already take> > Is what they subscribe.. And the other meds that are more long term meds> > to maybe keep it from getting worse have> > Terrible side effects..> > I am not sure what to do.. I need to do more excersise and loose weight..> >> > I am in a lot of pain the last 2 weeks.. I was on anti depressants for a> > long time.. And it seems like when I stopped the pain seemed to feel worse..> > I don't now if there is a connection.. That perhaps the medication some how> > hid the pain..> > I am 66 yrs old. And my husband and I have custody of> > 2 grandchildren 14 and 10..> > As soon as the weather is better I think I will start going for walks with> > my chunky poodle who could use the walk also lol.> > Well sorry to be so wordy but I am a little confused on what to do.. And> > maybe what dietary things that may help..> > Bet> >> > > >>

[Guest guest]

Thank you for the welcome Gloria..

Hot tub sounds great.. We had one years ago.. I can go

To the recreation center and do the walking machines

And use the pool they have some exercise every week

For women there in the pool.. Being in Wyoming it is all inside.. I plan to do some walking too.. Drive down to the green belt by the river and walk with my fat poodle that is starting to look like a cinderblock lol..

Does anyone use medications like anti depressants for the pain.. I know they prescribe them for fibromyalgia and I noticed when I went off anti depressants is when I really started to feel the pain where I havent before..

Bet

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

From: glokay20022002

Date: 03/06/07 06:15:47

Rheumatoid Arthritis

Subject: Re: New member

Hi Bet,

My name is Gloria and I am from Ok. I was dxd with ra in 2004. I agree with Deb as far as the exercise goes. My kids are always telling me to get some exercise and I would get better. They are right, but you have to do low impact or water exercise because if you do the wrong kind of exercise you will do your body more harm than good. My rheumy says that she can write me a script for a hot tub, and my insurance won't pay for it , but I could write it off my taxes. I am sure considering it.

This group has been a God send for me. They are all very compassionate and informative. When I am feeling depressed about all this, I get on here and whine and everyone understands. Anyway, welcome to the group sweetie. We are all here to listen and help.

Hugs from Oklahoma, Gloria

[Guest guest]

Thank you Deborah.. You mentioned diet. What kinds of

Foods are bad for RA.. I have taken naprosyn for years

For inflammation since I had an auto accident..

But now I have pain in other parts of my body even my feet

Sometimes.. I know realize I have had this a long time just

Have not had it diagnosed. When I went off antidepressants is when I realized how much pain I had

Bet

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

From: Deborah Bargad

Date: 3/6/2007 2:11:11 AM

Rheumatoid Arthritis

Subject: Re: New member

Dear Bet- RA is a serious disease and serious medication is needed to treat it. Medication can be an issue but living with pain is not helping your quality of life. Get the inflammation under control with meds first by seeing a Rheumatologist. Ra leads to OA which is deterioratioin and disintegration of the bone itself. RA is an immune disease and one of many connective tissue diseases. You may have deterioration of the spine that is NOT related to your accident but from RA also. Quality of life is key. There is no trade off. Pain leads to loss of quality of life which causes depression. It has psychological effects as well. Your doctor will most likely start you on the standard (conservative) medications. Be more afraid of the disease than the cure at this point. Fight it as aggressively as possible. RA is turned on by a dormant genetic glitch and anything can trigger it. It cant be prevented, but it can be treated. First and foremost. Be your OWN advocate. Research the wealth of resources online. We only fear the unknown. Make yourself in the KNOW and fear will not be a problem. I have had Ra since 1994 and am now 46. I have been fought for quality of life and am winning one day at a time. Your pain is very real and this disease is very real. Impact Exercise is counter productive for people with RA, but low or no impact to stress your joints as well as pool exericse and a good healthy diet is key. Certain foods are triggers. Make sure you get full sets of xrays to check for disease progression. We are all here as resources for you. Hugs, Deborah

[Guest guest]

Hi again Bet,

I am on paxil. I think that it helps alot with the stress that comes

with ra, and stress can make you have flares. I tried to go off it

once, and I was hurting like crazy within 2 wks. I have alot of

stress in my life right now, so the paxil does help with that, and

it keeps me from having so many flares because of the stress. I hope

that this helps. Sometimes I am just plain jibberish in the

mornings:)

Hugs, Gloria

>

> Thank you for the welcome Gloria..

> Hot tub sounds great.. We had one years ago.. I can go

> To the recreation center and do the walking machines

> And use the pool they have some exercise every week

> For women there in the pool.. Being in Wyoming it is all inside..

I plan to

> do some walking too.. Drive down to the green belt by the river

and walk

> with my fat poodle that is starting to look like a cinderblock

lol..

> Does anyone use medications like anti depressants for the pain.. I

know they

> prescribe them for fibromyalgia and I noticed when I went off anti

> depressants is when I really started to feel the pain where I

havent before.

>

> Bet

>

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

>

> From: glokay20022002

> Date: 03/06/07 06:15:47

> Rheumatoid Arthritis

> Subject: Re: New member

>

> Hi Bet,

> My name is Gloria and I am from Ok. I was dxd with ra in 2004. I

agree with

> Deb as far as the exercise goes. My kids are always telling me to

get some

> exercise and I would get better. They are right, but you have to

do low

> impact or water exercise because if you do the wrong kind of

exercise you

> will do your body more harm than good. My rheumy says that she can

write me

> a script for a hot tub, and my insurance won't pay for it , but I

could

> write it off my taxes. I am sure considering it.

> This group has been a God send for me. They are all very

compassionate and

> informative. When I am feeling depressed about all this, I get on

here and

> whine and everyone understands. Anyway, welcome to the group

sweetie. We are

> all here to listen and help.

> Hugs from Oklahoma, Gloria

>