Hello

[Guest guest]

Hello to all, Hope you are all doing well and hanging in there. That's

all we can do is hang in there, be strong and go on. We are all doing a

wonderful job PAT YOURSELVES on your back. LOTS OF LOVE Helen

[Guest guest]

Hi Everyone

I am doing farely well. I went to a neurologist and she diagnosed

degenerative disc disease with arthritis of my neck and lower back. He

started me on Neurontin for the nerve pain. It seems to be helping.

I have no idea what TIF would be. See if you can get some more information

and I will try to answer your questions.

Gentle hugs,

Fern

[Guest guest]

Hi Helen... haven't heard from you in a while. I guess you've been down

at the beach, basking in the sun. Hope your feeling better and how's

work going?

[Guest guest]

Hi Vicki,

I'm sorry to hear that you've been feeling so tired. The fatigue seems to be

a major part of these diseases....in addition to everything else. Somehow,

it helped me to know that the fatigue and the depression were common

denominatiors for all of these diseases.

I am really hopeful for you to be able to talk to your doctor about the

antibiotic therapy. More and more doctors are using it for rheumatoid

arthritis, and hopefully, the same goes for myositis. If I can help you in

any way, please let me know. I feel that I am 90% normal since being on the

antibiotics for the past two years. In a few weeks, I go to California to

see Dr. Franco for my yearly visit. I hope his lab-work and his clinical

observations agree with my earlier labs. My regular doctor is very pleased.

take care,

Connie

DM Aug '96 Antibiotics Feb '98

[Guest guest]

Hi Connie... I meant to ask you this before but I forgot. Where do you

live now? Are you already living in Calif.? I'm just outside of

Temecula. I go to Scripps Research Clinic in La Jolla, Ca.

I had to do my lung tests last week and failed them. I not only have

the PM but I also have Interstitial Lung disease and I have the

Anti-Jo-1 antibodies. In talking with the research doctor who is using

my plasma to try to find a cure for the Jo-1, he said right now there

is nothing that they can come up with that can kill it. The Anti-Jo-1

antibodies cause the same symptoms as the PM. It's like a double wammy.

When I get so fatigued my lungs also have a hard time trying to inflate.

I go on the 14th for a blood gas test and to pick up a sleep monitor.

Why.... this is so much fun I just can't stand it.

I do know that with the PM you can have different antibodies and it does

make a difference in the outcome. Is it the same in DM? I'm looking

forward in talking to my doctor about the antibiotic treatment and see

what they have discovered. Hope you've had a good day and a better

tomorrow. Right now the rain is pouring down. I hope I have a yard by

the time it's done.

[Guest guest]

My dear friend died last night. Not much in a chatting mood, will send more

later.

Fern

Hello

> From: ANZAVIC@... (Vicki)

>

>

> Good Evening Everyone... sorry I haven't been on but I have really been

> under the weather again. Sleeping for up to 18 hrs a day. I hope

> everyone is doing well. Joy, hows your daughter doing and how did the

> new doctor work out? Fern, how are things coming along with you?

> I know with myself that the fatigue is so overwhelming that it all but

> consumes you.

> I did talk to Teddi last night and while she's still tired she did go to

> her beading class in another state. I'm so happy she has taken this

> time to go off and enjoy herself.

> Last week when I went to the doctors I wanted to ask about the

> antibiotic therapy but was to sick, too many tests, and all I wanted to

> do was sleep. So I did leave a message with my doctor and we'll talk

> about it on my next visit. Have a good night everyone.

>

>

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

[Guest guest]

Hi Vicki,

I live in Richland, Washington....it's in the dry, deserty, eastern side of

the state. I fly from here down to the Ontario airport and see Dr. Franco

in Riverside. If there's any way possible that you could go see Dr. Franco,

he could tell you if the antibiotics would be able to help you with your

particular case. He definitely treats each case individually.

I don't have the anti Jo antibodies. I remember seeing that test on some of

the bloodwork. My lungs are great as far as the x-rays and pulmonary

function tests go....but ever since I started with the DM I have had a

horrendous cough. I've been tested for everything...from asthma to

tuberculosis to reflux and who knows what else. At first, the

anti-inflammatories helped to a certain degree. Then as part of the

antibiotic protocol, Dr. Franco started me on Zithromax in addition to the

Minocin (a tetracycline) that I was taking. It has gradually helped to the

point where I only cough 2 - 4 times each day, and hardly ever do I get the

" bad cough. " I no longer worry if I am going to get a cough attack at the

grocery store or while talking to someone. For that I am very thankful.

With DM, they check the CPK muscle enzyme level, which I assume they check

with most myositis. They also check the aldolase. I'm afraid that I don't

know all of the details as far as the blood work goes. I can find some of

my previous lab reports if you would like to compare notes. With my case,

it took a long time for anything to be out of the normal range. Dr. Franco

said that I have a mild case. I don't know if it was mild because it was

discovered fairly early, or that it is slow to progress or if it was just a

mild case.

Vicki, I pray that you can find some help with your illness. A lot of

prayers helped me to gain back most of my health. I hope to be able to help

other people in some way. My local internist is a very good doctor,

especially because we don't live real close to a major medical center. My

doctor was trained at Stanford Medical School. She started me on the

antibiotics (she knew that I had one of the rheumatic diseases, but couldn't

identify it for sure). I found out about Dr. Franco on the internet and was

able to work with both him and my local doctor. At one point early in my

disease before I was diagnosed, I went to the best doctors at the University

of Washington. They said that I appeared to have Lupus, but it wasn't

indicated in the bloodwork and they sent me home. They wanted to give me

prednisone for my cough, but my local doctor wanted to wait and I'm glad we

did. Dr. Franco was able to pinpoint the DM and it later became evident in

my CPK level. I plan on contacting the doctors at UW and telling them of my

progress on the antibiotics. Hopefully, when the next person with one of

these diseases comes to see them, they will start the antibiotic treatment.

I hope I haven't gone on too long. It's just that I hope and pray that

everyone can get on with regaing their health and their lives.

talk to you soon, take care,

Connie

Re: Hello

> From: ANZAVIC@... (Vicki)

>

>

> Hi Connie... I meant to ask you this before but I forgot. Where do you

> live now? Are you already living in Calif.? I'm just outside of

> Temecula. I go to Scripps Research Clinic in La Jolla, Ca.

> I had to do my lung tests last week and failed them. I not only have

> the PM but I also have Interstitial Lung disease and I have the

> Anti-Jo-1 antibodies. In talking with the research doctor who is using

> my plasma to try to find a cure for the Jo-1, he said right now there

> is nothing that they can come up with that can kill it. The Anti-Jo-1

> antibodies cause the same symptoms as the PM. It's like a double wammy.

> When I get so fatigued my lungs also have a hard time trying to inflate.

> I go on the 14th for a blood gas test and to pick up a sleep monitor.

> Why.... this is so much fun I just can't stand it.

> I do know that with the PM you can have different antibodies and it does

> make a difference in the outcome. Is it the same in DM? I'm looking

> forward in talking to my doctor about the antibiotic treatment and see

> what they have discovered. Hope you've had a good day and a better

> tomorrow. Right now the rain is pouring down. I hope I have a yard by

> the time it's done.

>

>

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

[Guest guest]

If I could figure out how to use my flippin scanner I would !!! I have some

adorable ones of them lying in their hammock that I would love to post to

rats@egroups but I am an idiot when it comes to figuring out stuff like that

!!!! Will surely do it as soon as I can !!!

" We Don't Own The Earth...

We Borrow It From Our Children "

>^..^<

[Guest guest]

Thank you Vicki !!! My memory isnt totally gone yet - woooohoooo !!!!! I

will make certain to ask him tomorrow !!!!

" We Don't Own The Earth...

We Borrow It From Our Children "

>^..^<

[Guest guest]

I told him about our conversation and he rolled his eyes at me !!! He said

something to the effect of " That isnt something that will help you get

better. Just listen to what I tell you to do and that will help you. Dont

worry about antibodies. " What do you make of that ???? My CPK levels are

down from 1570 to 380 though so I guess Im doing someting right. Just not to

sure about his bedside manner sometimes.

" We Don't Own The Earth...

We Borrow It From Our Children "

>^..^<

[Guest guest]

He is a Rheumy and came to me highly recommended. Supposedly is top notch

with the PM thing. He is Indian and I have a hard time understanding him

sometimes though. I think I may call another one who's name I was given but

need to think it through first. Dont want to jump the gun or burn any

bridges.

" We Don't Own The Earth...

We Borrow It From Our Children "

>^..^<

[Guest guest]

I am pretty sure the closest is the Mayo Clinic in ville. Supposedly,

they are really excellent with PM there. I agree with you about the Indian

men thing (I hope I dont offend anyone) !!! Think Ill be calling Dr. Freeman

tomorrow.

" We Don't Own The Earth...

We Borrow It From Our Children "

>^..^<

[Guest guest]

His name is Dr. Sheikh (pronounced Shake) .

" We Don't Own The Earth...

We Borrow It From Our Children "

>^..^<

[Guest guest]

Your welcome , I hope our able to find out what antibody you

have.

Have a great day.

Vicki-PM

[Guest guest]

Pam - she is supposedly real good too !!!

" We Don't Own The Earth...

We Borrow It From Our Children "

>^..^<

[Guest guest]

....OMgosh... that sounds like shades from my past. Is this

guy/gal a Rheumy? Regardless, he should have honored your request and

given you the antibodies that you have. THAT IS YOUR RIGHT! It does

give you a marker as to what to expect out of your disease. I'm sorry,

but I've learned that any doctor that tells you that is not at all

interested in working WITH YOU.... have you asked for copies of your

medical records? If not, you might call them and ask for copies of your

whole medical record. They have to do this by law..... this is a good

idea for everyone to do. My doctor, at every visit, gives me the copies

of our last visit after it's type up. My lab reports arrive in the mail

to me. I can't tell you how wonderful it is to go back and check on

something in your lab reports. ...be aggressive and demand that

he tell you. Has this person worked with myositis patients before or

are you the first?

Vicki-PM

[Guest guest]

... I also had a doctor who was from India and I couldn't

understand a word. I have found that while they might be well educated,

they still feel that women should be seen and not heard. We have a lot

of them out in Calif. and I can tell you that I've heard the same from

all the women I know. I'm sorry but I would actively seek another

Rheumy that will work with you and that you can understand. My doctor

and the head of the clinic have told me that they are only as good as

the patient that tells them how they are feeling. They insist that the

patients work with them side by side. With this disease doctors DO NOT

know everything and are learning all the time...

You should be able to ask any question you want and get an answer. You

should be able to ask for something from your doctor and get it. You

should be able to work hand in hand with your doctor about your

medications. My doctor told me one day... " We, as doctors, have the

schooling but we have to rely on our patients to tell us how you feel...

it's up to us to inform you of new medications and to answer your

questions and help you with anything you need. " This is when I asked

for copies of my medical records as we went along... He was so pleased

that I showed an interest in my own welfare.

My advice to you is....get another doctor and don't worry about burning

bridges....

Do you have a large teaching hospital in your area?

Vicki-PM

[Guest guest]

Ooops ... forgot to ask...what is your doctors name?

[Guest guest]

Hi .... can I get the first name to Dr. Freeman?

[Guest guest]

What a JERK! I would start looking for another doctor who was willing to talk to me.

*karen*

DM

Re: Hello

I told him about our conversation and he rolled his eyes at me !!! He said something to the effect of "That isnt something that will help you get better. Just listen to what I tell you to do and that will help you. Dont worry about antibodies." What do you make of that ???? My CPK levels are down from 1570 to 380 though so I guess Im doing someting right. Just not to sure about his bedside manner sometimes."We Don't Own The Earth...We Borrow It From Our Children" >^..^<

..

[Guest guest]

Teddi...I can surely relate to your frustrations. When I was on Prednisone I

had gained 100 lbs and it was the most frustrating time. I always fell down

the stairs, or in the mall where everyone could see...lol. Every time I

looked at a picture of me, I said " who is that person " , because not just your

looks unfamiliar, but your identity. I was a b8784. Hot all the time. If

it is any inspiration, if and when you are able to get off prednisone and you

will lose weight you will be motivated somewhat. I went on a strict " sugar

buster's " diet , you can find the book anywhere. Even though I can't

exercise I have lost 50 lbs. Have they tried gammagloublin infusions, and

methotrexate or imuran as an alternative. I think the IVIG helped me.

When my children were little, and it became mosquito time I went to the

health food store and they had a natural mosquito repellent, I believe it was

called " skeeter shoo " . It came in a little bottle and it was expensive, but

it worked. All ingredients

are natural, no harmful chemicals period. Try to get the health food store

to find it for you or maybe you can find it on the Internet.

Pam-DM

[Guest guest]

Pam ... Hi, how are you today. How's the weather where you are. It's

so hot here and I can't stand the heat at all. I don't do very well.

Now, did you find it hard to do the suger buster diet? I've been on

salads mostly and I will loose 9 lbs then if I go into town I could feel

the weight coming back on and sure enough I would put on about 11 lbs.

It would takes weeks to get it off. I seem to think it's swelling. I

love the natural fruits and the juices. Are they allowed on this diet?

Once the heat really sets in I'll live on juices, salads, yogurt, ice

tea....

Hey thanks for the info on the mosquitos stuff. I'm going to the heath

food store tomorrow to get the lavender oil so I'll also look for that

as well. I'll send it all to her to see which one works the best for my

little girl.

Hope your doing really well today.

Vicki-pm

[Guest guest]

Hi Pam

I've been heavy ever since I had my kids but

the pred has packed it on......been on it for

4yrs and it doen't look like I will ever get off

Of course losing 3 inches in height didn't help....especially since I

didn't quite hit 5 ft at

my tallest....lol (or should that be at my least

short?)

Have been to the nutritionest and followed a

1200 calorie diet (done on the exchange method)......weighed and

measured everything

and lost less than 1 lb a month..bummer!.

I'm in remission for the DM so have never

had anything except pred.

Soooo I've decided to not sweat the small stuff

<VBG>

Teddi-dm

[Guest guest]

Hi Dana....this is Vicki... I'm always so glad to meet another PM'er....

Since your on Methotrexate I am assuming that you don't have the JO-1

antibodies with the lung involvement. How long did you have the

symptoms before you were diagnosed? How long have you been on the

Enbrel injections?

I also take Enbrel and I can tell you that so far it has been the only

thing that has given me energy. I also take 150mg of Imuran and 2mg of

prednisone. In Oct of 98, when I was diagnosed and put in the hospital,

my cpk was 12,000. Now it is 65. I also have the JO-1 with lung

involvement. I wish I had a pool to go to cause I surely would be there

today. My doctor did tell me that just sitting on the floor and doing

stretching is very good for you...but you have to have help getting back

up. I do caution you on the exercising while your cpk is still

elevated. Water exercising would still be the best and stretching.

Your doctor really has you moving along on your meds. In just 6 months

you have been on alot of them. I went on the Imuran first and stayed

there for one year. It sometimes takes that long for the drug to do

it's job. Then we went to cyclosporin and I became very ill so I had to

stop it after just a month. Next came the Enbrel and it has been the

best. Now I notice that I pick up more energy with every shot. Thats a

blessing to me.

Just remember that this disease feeds on our stress level. Take life

one day at a time and work your way on up to where you want to be.

We've all been there and know how frustrating it can and will be for

you.

What part of Fla. are you living in? We have a few people on the list

who also live in Fla.

As for the long post....don't worry, we like the long ones just like the

short ones. Here were able to vent and get things off our chests. It's

good for us. So, don't worry about boring anyone because you won't.

We're all here to lend a helping hand.

Vicki-PM

[Guest guest]

Hi Dana

Welcome to the group!......I/m Teddi and I have

had dermatomyositis for the last 4 yrs.......If

you have trouble with the walker STAY AWAY

from the 4 legged cane........It is cumbersom

and it seems like those little legs always have

1 dragging.......I tried using my mothers and

almost killed myself with it......It is now doing

duty by the tub as a combination aid to getting

out of the tub and towel rack....lol......As for

exercises......the ones they started me on were

with the 'rubber bands " ........physical therapy

should be able to give us sheet of exercises

and tell you where you can find the bands.

Teddi - DM

PS - Let me clarify getting out of the tub....My

tub has very low sided.....I have a bath stool

in the tub and the hand held shower.....no way

can I get up & down.............can't even remember what a bath feels

like