Hello Everyone

[Guest guest]

sherman.fam@... wrote:

I haven't

> been writing much since I am just getting over the worst bout of

> bronchitis ever. I seem to get sick quite a bit and I do not take any

> of the drugs that alter the immune system.

Hope you'll feel better real soon. I've had bronchitis and pneumonia

any number of times before and since I started on prednisone and MTX.

Actually, though, I haven't had either one as often as I did before

going on those drugs. Have you noticed that it takes you longer to get

over these type of infections too? When I come down with either

bronchitis or pneumonia, no matter how quickly I get on antibiotic, it

seems to take weeks and weeks for me to fully recover. Are sinus

problems " normal " for everyone with PA also? That is an almost constant

problem for me.

Marsha

[Guest guest]

In a message dated 09/12/1999 11:07:08 AM Eastern Daylight Time,

opaoma@... writes:

<< Are sinus

problems " normal " for everyone with PA also? >>

I have had sinus problems a lot...and had 2 bad cases of bronchitis since

March. It took me weeks to get over them each time. I hope you feel better

soon...

Annette

[Guest guest]

Dear Marcia: You have just described me to a " T!!! I feel the exact same way.

Jayne

Marcia Umland wrote:

> From: " Marcia Umland " <ldywriter@...>

>

> Marsha,

>

> I also have constant sinus problems. Suffering now from sinus headache.. And

> yes it does seem to take forever to get over brochitis.

> The fatigue gets to me too..either I can't sleep or all I want to do is

> sleep.. and wake up so stiff and achy and then at other times have all these

> little shooting pains.. never know where I'm going to hurt next. I feel like

> the tin man from the Wizard of Oz! Where's the oil can quick!! lol

>

> Marcia.. hoping to never lose my sense of humor

>

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

[Guest guest]

Annette; This is my second case of bronchitis since June. In June even though

I took an antibiotic, it took weeks to recover. I have it again, but this time

I am not taking an antibiotic only decongestants. Did you take an antibiotic

both times for your bronchitis???? Why do we keep getting this annoying thing?

My sinuses hurt so bad right now, I feel as if my head is just gonna fall off.

Take care. Jayne

Frog1945@... wrote:

> From: Frog1945@...

>

> In a message dated 09/12/1999 11:07:08 AM Eastern Daylight Time,

> opaoma@... writes:

>

> << Are sinus

> problems " normal " for everyone with PA also? >>

>

> I have had sinus problems a lot...and had 2 bad cases of bronchitis since

> March. It took me weeks to get over them each time. I hope you feel better

> soon...

>

> Annette

>

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

[Guest guest]

At 10:23 PM 9/11/1999 -0400, you wrote:

>From: opaoma <opaoma@...>

>

>sherman.fam@... wrote:

>

> I haven't

>> been writing much since I am just getting over the worst bout of

>> bronchitis ever. I seem to get sick quite a bit and I do not take any

>> of the drugs that alter the immune system.

>

>Hope you'll feel better real soon. I've had bronchitis and pneumonia

>any number of times before and since I started on prednisone and MTX.

>Actually, though, I haven't had either one as often as I did before

>going on those drugs. Have you noticed that it takes you longer to get

>over these type of infections too? When I come down with either

>bronchitis or pneumonia, no matter how quickly I get on antibiotic, it

>seems to take weeks and weeks for me to fully recover. Are sinus

>problems " normal " for everyone with PA also? That is an almost constant

>problem for me.

If PA is an autoimmune disorder, which it is, that means that our immune

systems are malfunctioning, not working properly. It makes sense that we are

therefore that much more susceptible to every other kind of illness, virus,

bacteria, etc. that comes around, and take longer to get over them, since

our immune systems have to do the job of fighting these infections, etc.

off. It's basic biology. So even if you aren't taking the drugs that

suppress the immune system, your immune system is still not really working

right anyway. Our bodies are too overloaded with toxins, and under-nutriented.

I'm so pissed off right now, in fact. At myself mostly, and just

circumstances. Or the lack of control over my circumstances. My 13 year old

daughter just informed me that she has red scaly patches along her panty

lines. I showed her the one little P sore I have right now (it's summer. I

don't get it in the summer usually, but I figure I have it right now due to

the major flare up I've been having since Abbie was born), and she says they

look " just like that, only with more dead flaky skin on them. " I wanted to

punch the wall. My genetics, and my lousy eating habits now being passed on

to the next generation. I pray to God she doesn't get the PA part of it!!

I'm more determined than ever to make major changes in eating and exercise

habits in this house. My other daughter, she's 8 1/2, and my 10 year old son

both have hay fever, and every once in a while my 8 yr old daughter will

break out in hives. We haven't been able to find the trigger, but it may be

the grass at school, since that's where it happens--when she's out at

recess. She stays away from the grass now.

Geeze. The more I learn about all this, these stupid auto-immune disorders,

the more angry I am at the way we've polluted our world, wrecked the soil by

overproduction, and forgotten how to eat naturally. So we're all living too

short and dying too long with these degenerative diseases. First me, then my

sister, now my own children. I am not going to sit still and watch my

children die slowly before my eyes. We are making major changes here. Major

ones. Starting with eating habits. Then progressing to a more regular

exercise program for the entire family--if our lean muscle mass is higher

all around, we'll all be able to metabolize and use the food/nutrients we

eat than we can now, thereby making us all a lot healthier. If I can build

up ALL our immune systems, maybe my daughter with the P won't get the PA, or

at least will be able to hold it off a lot longer. At the very least, I'll

be teaching her better habits of self-care, and better health all the way

around. And, yes, I'm getting them all on the supplement program I'm using,

tailored to kids. Whatever it takes to protect them. I make them walk to

school together for protection, I teach them to be cautious of strangers for

protection, I don't let them run around at night, or go anywhere alone, and

I keep a fence around the pool, all to protect them. But what good is it if

I can't protect them by giving them as healthy a body as I possibly can? I

can't believe how furious I feel at the fact that my 13 yr old has started

getting P. Do you know what she did when she told me? She wept! She was so

afraid of getting the arthritis, and going through all that I've been

through lately. I told her that only a very few people with P ever get the

arthritis. Thank goodness she trusts me. To see that fear in her eyes though....

I guess anger is all part of coming to terms with PA. Like the grieving

process. Does this mean I'm past the denial stage? ;-)

Kathy Fowkes

fowkes@...

[Guest guest]

I did not take antibiotics for the bronchitis because my doctor is reluctant

to prescribe them. It took forever to get over each episode. I have not had

sinus problems since my doctor prescribed FLONASE for me. I use it twice

daily and it has helped greatly. The sinus trouble was really bad and I felt

awful from it. Mine was not in the normal sinus cavities but back behind

there somewhere hard to explain. The FLONASE worked for me.

I hope you feel better soon...I know what you are going through.

Good Luck and God bless...

Annette ))

[Guest guest]

Marcia Umland wrote:

>

> From: " Marcia Umland " <ldywriter@...>

> the tin man from the Wizard of Oz! Where's the oil can quick!! lol

>

> Marcia.. hoping to never lose my sense of humor

>

Marcia -- I, too, hope you never lose your sense of humor! Finding

something to smile about in spite of the pain is what keeps us going!

Marsha

[Guest guest]

Marcia & Marsha,

I too have horrid sinus problems. I live in the San Joaquin Valley and it's

known for high sinus problems. I had a botched sinus surgery in town which

almost led to my death. Can you imagine dying from a sinus infection? My

infection got so bad that I had to go to Stanford for another surgery. I had

an infection which had spread to my brain. Though I am better, it's been a

year since my last surgery, I still suffer and just finished up antibiotics

yesterday. One thing they do at Stanford is culture your mucas and then

after they get the results, they give you the right antibiotic. This way you

don't have to suffer any longer than necessary. Also, sometimes they have me

take Prednisone when I have an especially bad infection. I guess it helps

the antibiotic work better. I usually take Cipro when I have a sinus

infection.

Amy

[Guest guest]

I know of several llmd's around or in MD!!!!! Contact me privately!!!

[ ] Hello Everyone

> Hi Everyone,

>

> My name is Kris. I'm a 27 yr.old single mother of two, living with

> Lyme's for nearly 3 yrs. now. I was diagnosed about 2 yrs. ago. The

> first year of this nightmare spent being misdiagnosed & tested for

> everything under the sun. My tests for Lyme's continually flip-

> flopped...one would be neg, another positive, and so on. I found

> the 'bullseye' mark all over my body, but never developed the rash

> and I never got meningitis. The doctors constantly told me that I

> couldn't possibly have Lyme's because I never developed the 'common'

> symtoms. Such bullshit! I've talked to so many others suffering

> with Lyme's and there are so many of us who never had the same

> symptoms. We all seem to differ at some point. But all the doctors

> I went to (4), just wanted to shove doxycyclene & penicillian down my

> throat & told me I would be fine in a few weeks. After the 4th

> doctor & 3 months on antibiotics, I wasn't getting any better. I was

> constantly sick to my stomach, lost a tremendous amount of weight,

> not to mention losing my hair, and living in constant pain. So I

> quit the doctors. I know it wasn't such a good idea, but finding a

> good doctor who understood me & my suffering wasn't happening. It

> seemed like every doctor I went to wanted to get me out of their

> office ASAP.

>

> I haven't been to a doctor in over a year or so, and I know I need to

> go to one. Everyday is painful. My legs & neck are constantly

> hurting. My vision is failing & my emotions...I'm on the emotional

> rollercoaster from hell!

>

> My question...Where can I find a 'good' doctor in land? Do any

> exist? Does anyone know of any doctors close to land?

>

> Thanks in advance for your help.

>

> Kris

>

>

>

> Welcome to

>

> Easy Reference:

> Send a blank email message to:

>

> -Unsubscribe - Unsubscribe from the list

> -Digest - Switch your subscription to a digest

format

> -Normal - Switch your subscription to normal

>

> Please send messages not related to Lyme disease (this includes humor and

information about other diseases) to -Offtopic

>

> The archives can be accessed at

>

> The chat room is always open!

> /chat

>

>

[Guest guest]

Dear Elsy:

I am very glad you have found this group. All

the people here are very kind and supportive and have much knowledge from

professionals they have as Doctors and from their own personal

experiences.

I have and Lyme Disease from 1999 and on antibiotics for almost 2

years. This treatment has been very successful for me and I am improving

all the time. I have HAD TO LEARN to be very patient and kind to myself

(even with others are not and do not understand this illness). I have

also has to learn to educate myself and to find an excellent Lyme Literate

Doctor and follow the instructions very carefully.

Please use our group for your own support and ask questions

withoug being afraid to show you need to understand. The internet URL's

are also very helpful and there are many around the world.

I pray you will get good treatment and have hope and courage. These

psychological tools are important along with the anti-biotics.

Peace and Joy to you:

-GLEN in New Jersey, USA

_________________________________________________________________

/ | GLENROY WOLFSEN wolfsen@... | \

( - - - " The final, ultimate freedom, the daring of / \ \

\ | freedom and the burden of freedom, is the virtue of( - ) /

\ religious maturity. (react as rarely as possible..)Nietzsche/

\_____Berdyaev__________________________________________________/

<http://www.eclipse.net/~wolfsen>

[Guest guest]

Elsy ,, welcome ,,, I too had 2 hernias ,, in fact the last hernia surgery

had this come out with a vengence.. I was dx with fibro ,, have gotten pain

manamgment. If you can find a pain managmenet doc please go and work toward

gaining a part of your life back ... I was very ill as well just started iv

rocephin on Friday,, it is helping me with energy ,, pain is a little better

,, but it is a variable ,, i went thru 3 docs before i found one who knew

about lyme,, perhaps u can take copies of the blood tests and the urnine test

to your doc ,, ask them if they can look into borrleia ,, and the necessary

treatment ,, good luck and god bless,, this is a lovely group of people too

,,

[Guest guest]

Elsy,

Fibromyalgia, weight gain, chronic fatigue...You still have the Lyme. It

comes back after inadequate treatment.

Rita

atthelake@...

[Guest guest]

Welcome Elsy! I can't help much as I'm learning as much as I can right now

about this nasty disease but wanted to say welcome

G Jody G

O May you have enough happiness to make you sweet,

enough trials to make you strong,

enough sorrow to keep you human,

enough hope to make you happy. O

' <A HREF= " http://hometown.aol.com/tarabencaitysmom/index.html " >Jeff & Jody's

Family</A> '

[Guest guest]

In a message dated 10/24/2001 11:22:02 AM Eastern Daylight Time,

halliekoss@... writes:

<< Unfortunately I am stuck taking ibuprofen for pain, my

insurance won't cover NSAIDS >>

Hallie - first of all - welcome to the group!

I am a little confused about your saying that your insurance won't cover

NSAIDS - most cover prescriptions for the typical NSAIDS like Indocin,

Relafin, etc. but many have an approval process you need to go thru for

Celebrex, Vioxx (yes, I know, those aren't really NSAIDS) and some of the

others. Check if your insurance program has a web site where you could find

out more info. or if it's thru your employer, find out who the plan

administrator is (I'm ours!) and advice on how to proceed with approval or an

appeal.

[Guest guest]

Hi Hallie,

PA is really two different diseases, axial and periferal. Axial

disease affects the spine mostly the SI joint and usually doesn't

respond to dmards or nsaids. TNF inhibitors seem to be the only

effective treatment. Periferal disease affects hands and other

extremities and is more similar to RA so it responds better to RA

protocal.

Cheers!

> Hello everyone,

> I am new to the group. My name is Hallie. I am 26

> years old and have had PA for three years. I am

> currently taking 20mg of MTX, it's not working very

> well. I have also been on sulfasalazine with no luck.

> Unfortunately I am stuck taking ibuprofen for pain, my

> insurance won't cover NSAIDS. My doctor says the next

> step is cyclosporine. Has anyone been on this drug?

> Does anyone have any ideas for pain management? Can

> anyone tell me about having PA in the spine?

> Thanks,

> Hallie

>

-------------------------------

Cyclosporine has a big side effect of raising blood pressure.

[Guest guest]

Hallie, welcome to the group...My name is Pam and I am 29...I have had PA for

not sure how long, but I was just diagnosed a couple of months ago...I am on

Sulfasalazine and I take Vioxx for the pain and swelling, that seems to do good

unless I am just really having a bad day...I don't know if the Sulfasalzine is

working or not, my doctor said give it three months to see...This is a great

list and all the people are very helpful...I am sure many people can give you

advice on here...Again welcome...Pam

hallie cornell <halliekoss@...> wrote: Hello everyone,

I am new to the group. My name is Hallie. I am 26

years old and have had PA for three years. I am

currently taking 20mg of MTX, it's not working very

well. I have also been on sulfasalazine with no luck.

Unfortunately I am stuck taking ibuprofen for pain, my

insurance won't cover NSAIDS. My doctor says the next

step is cyclosporine. Has anyone been on this drug?

Does anyone have any ideas for pain management? Can

anyone tell me about having PA in the spine?

Thanks,

Hallie

[Guest guest]

Hello Everyone,

My name is Andy Lackraj. I have been experiencing pain in my back

and was experiencing Flu like symptoms, my doctor siad it was the

summer Flu. Unfortunately, that was not the case, both of my kness,

my right ankle and right wrist started to swell. I started see a

Rheumatologist and he diagnosed the condition to be PA. Right now I

am taking 50mg VIOXX along with 10mg of Methotrexate. I take 2 -2.5mg

of the Metotrexate

twice in one day and will do this for 4 weeks. I started last Sunday

and I am hoping that it puts the disease into remission. I am 36yrs.

old and have mild Psoriasis. Glad to be in our midst and hopefully

we can provide support for each other. Best of luck to al of US.

Andy

[Guest guest]

Elissa,

I'm sorry you are having to deal with this at such a young age. I thought I was young at 30!! I was diagnosed just a month before you were(although they believe I have had it for years) and I have learned alot from this group. Believe when I say I understand how bad the acne is. My hepatologist is sending me to a dermatologist and I go on the 17th. I'm pretty sure they are going to put me on tetracyclene, but I will let you know what they suggest. I hope your doctor has been running bloodwork for you. My doctor was lowering my prednisone way too fast and my enzymes were going back up. What dosage did they start you out on? As far as the depression I think I have been pretty lucky. I have two young children that keep me busy and as long as I feel in control and informed of what is going on with me I seem to be more accepting and not depressed. You are so newly diagnosed that you will be on a rollercoaster of emotions, not to mention what the prednisone does to you. Feel free to email me anytime and good luck!

Bethanne Elissa <liss6484@...> wrote:

Hello Liver Group! I am a 17 year old female who was diagnosed with AIH in October 2001 after a liver biopsy. I am currently taking 5 mg of Pred and 50 mg of Imuran. I am battling severe acne thanks to the pred and I am putting on the pounds. I also have trouble sleeping at night and am severely depressed. My doctor put me on 50mg of Zoloft a day, and it doesn't seem to be helping. This is normal, right? Do any of you know anything I can do to help my situation? I'd love to chat. my screen name is liss6484

[Guest guest]

Elissa,

I'm sorry you are having to deal with this at such a young age. I thought I was young at 30!! I was diagnosed just a month before you were(although they believe I have had it for years) and I have learned alot from this group. Believe when I say I understand how bad the acne is. My hepatologist is sending me to a dermatologist and I go on the 17th. I'm pretty sure they are going to put me on tetracyclene, but I will let you know what they suggest. I hope your doctor has been running bloodwork for you. My doctor was lowering my prednisone way too fast and my enzymes were going back up. What dosage did they start you out on? As far as the depression I think I have been pretty lucky. I have two young children that keep me busy and as long as I feel in control and informed of what is going on with me I seem to be more accepting and not depressed. You are so newly diagnosed that you will be on a rollercoaster of emotions, not to mention what the prednisone does to you. Feel free to email me anytime and good luck!

Bethanne Elissa <liss6484@...> wrote:

Hello Liver Group! I am a 17 year old female who was diagnosed with AIH in October 2001 after a liver biopsy. I am currently taking 5 mg of Pred and 50 mg of Imuran. I am battling severe acne thanks to the pred and I am putting on the pounds. I also have trouble sleeping at night and am severely depressed. My doctor put me on 50mg of Zoloft a day, and it doesn't seem to be helping. This is normal, right? Do any of you know anything I can do to help my situation? I'd love to chat. my screen name is liss6484

[Guest guest]

Elissa,

Welcome to the group....I have been a member here for quite a long time....I am here for my son who is now 19....he has AIH and another liver disease called PSC...I am also on a support group for that...it works the same way as this group does...with Many...MANY e-mails....It is hard for me to keep up...and then to top it off this past fall my computer blew....

I am finally back up and running...as of the 8th....so I was able to see your e-mail....

The amount of pred you are on is very low...so maybe that is one reason you are not getting alot of relief....the pred does cause all the problems you are talking about...the acne and the weight gain....but when it works it is worth it....I am sure you have been told or will see in the future that weaning off pred is very important....and that slow is the way to do it....with out too many side effects....

Tyler is my son and has been on the high doses and other meds....he has been sick since he was 9 yrs old....he also has Crohns Disease, Rhuematoid Arthritis and Vasculitis....he had problems with missing alot of school...last yr ..his senior yr he was out from Thanksgiving to the end of March...in the hosp most of the time....He is now a freshman in college...although he did have to change plans about going away to college...he is living home and attending and doing well...both with school and his health..

[Guest guest]

Jeanette, you're a tough cookie! I'm cheered to find you aren't wilting under all the difficulties your health system is throwing your way! Write us as often as you can; I love to hear from you.

Harper

[Guest guest]

Get your FREE download of MSN Explorer at http://explorer.msn.com.

[Guest guest]

Jan it's been raining here in Oregon for the past couple of days...Today

-it was also very windy!!!!

Jannewilms42@... wrote:

nice

to hear from ya..Hope you have a great weekend..We are having a little

rain here today..Is that you sending it to us???

[Guest guest]

nice to hear from ya..Hope you have a great weekend..We are having a little rain here today..Is that you sending it to us???

[Guest guest]

Jan, I thank the rain you are getting today is the rain we had Thursday night, I wouldn't mind if you sent it back this way.

Terry

Jannewilms42@... wrote: nice to hear from ya..Hope you have a great weekend..We are having a little rain here today..Is that you sending it to us???