New Member

[Guest guest]

-

Hi ,

I live in Texas not California..wish I did tho!!

No I don`t know about the diagnoistic`s of LD and I thought all I

had to do was the test..there is only one specialist I know in this

state and have not gone to see him yet. Had the Immunologist run the

tests for me and send to Igenex.

Am I suppose to go to the LD Specialist first.....gee that sounds

like a dumb question...I have seen so many doctors since this all

started in 92 it is simply unbelievable. Didn`t know about seeing the

specialist first. By the way the LD Speciast shares the same office

as my CFIDs doc and the word is major jealousy if she loses a CFIDS

patient,,been waiting to get the results from the Western Block first

before I change over because as I understand it..the CFIDS doc(only

one in town too!) may kick me out as a patient if I see her associate

and I dont want to burn that bridge. Dont know how to go about it

without upsetting the CFIDs doc.

Regards,

-- In @y..., " NMcmu6937 " <NMcmu6937@m...> wrote:

> Welcome . It sounds as if you are in CA? Where abouts? My

daughter lives in Seaside, on the Monterey Peninsula and she was

diagnosed in Aug. of 2000. Do you have an LLMD? The waiting for test

results *is* frustrating, but the lab results are not the sole way of

diagnosing. It really is a clinical diagnosis, but you probably

already know this from your reading. Now I'm rambling....

>

>

> The human spirit is stronger than anything that can

> happen to it.

>

> C.

[Guest guest]

Alez, howdy, where abouts do you live? I am in Donie, about 60 miles east

of Waco.If you suspect Lyme, I would go see him no matter if your tests come

back + or -. Tests are poor and Lyme is first and formost, a clinical

diagnosis. Are you seeing the Dr that is treating Lyme in Houston? There

is another Lyme Dr up in Fort Worth, he is fantastic, and has been treaing

Lyme for quite some time. Good luck with it all, take care, Pepi

Metzler Chocolates

Fine Artisan candies, handmade

with the finest ingredients.

___~----..,,.

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[Guest guest]

In a message dated 3/15/01 9:55:06 PM Central Standard Time,

alexcrss@... writes:

<< By the way the LD Speciast shares the same office

as my CFIDs doc and the word is major jealousy if she loses a CFIDS

patient,, >>

Are you talking about Dr. Salvato and Dr. Harvey in Houston?

[Guest guest]

Hi alex!

You didn't ramble at all. You should have seen my first post<i joined

this group recently since being bit in November>. I rambled really

long. It is just so nice to be able to tell your story and share your

frustrations with people who have been through it..and for me, i

remember how i felt so much better when i listed my symptoms and most

people here said ..yup have had that.

Since I am new to this disease myself, i don't feel qualified enough

to tell you about it..all i can really do is share my symptoms and

relate to yours. I can give you a piece of advice though..if you

haven't done it already...It helps to learn everything you can about

this disease. I ask fifty gazillion questions, got denise lang's

book<coping with lyme disease>, have gone to lymenet and look up

things through their site...I mostly get my info from the wonderful

lady who is head of a support group where i live. She knows her

stuff. But learn learn learn..the more you understand about it, the

less frightening it is:)

Take care of yourself,

jenn

[Guest guest]

Dear ,

Welcome aboard! (VBG!)

You've certainly come to the right place to learn about lyme! Of all

the lists I've belonged to (past & present), I must say this group is

the warmest, most caring support group!

Glad to read your doc sent test(s) to Igenex!

Blessings,

Chris

[Guest guest]

In a message dated 04/19/2001 1:23:58 PM Eastern Daylight Time,

Rev.Mitch@... writes:

<< know that

Prednesone can only be a short term remedy, and am wondering how people in

the group have responded to Prednesone >>

Hi Rev. Mitch - Welcome to the group - I've been on gradually decreasing

Prednisone for 2 years. Just stopped totally within the last few weeks. I'm

dealing, but I'm so stiff in the mornings that when I get out of my car at

work, it takes a good five minutes to walk the 10 yards or so to the door.

Steriods are great to take away the pain of inflammation, but they do have

wicked side effects. I'm glad you're also on Celebrex - I'm on Vioxx

(basically same thing) and MTX -

As far as alternatives to Pred. - there really aren't any except for DMARDS

(MTX, Remicade, Enbrel) -

Hope today is painless for all,

[Guest guest]

In a message dated 21/04/01 04:49:10 GMT Daylight Time, NippyNige@... writes:

Speak Soon

Nigel )

Hi Nigel,

Glad you joined. I do like the signature !!!

Hope to see you next month.

Mike (from the UK)

[Guest guest]

Hello again,

Im just getting into this email chat thingy and forgot to mention about the PA conference I have organised on behalf of the Psoriatic Arthropathy Alliance. I've tried to make it a bit less stuffy than most boring conferences that we all end up to at times - so we've got some music and drama to break the day up - should be fun. It's in Bournemouth (UK) on May 5th - interested, then get in touch.

Nige

[Guest guest]

Hi!! My name is Sharon and I have had psoriasis for 30 plus years. It was only about 5 years ago that I even heard the words psoriatic arthritis. My husband, a fireman used to seeing/treating people from the very kinds of pains, used to get so upset every time I had a flare up because not knowing what it was I would go to the Orthopedic guys and they would tell me everything was normal After about five times to them (each time a different area-shoulder left then right- then elbows then wrists then knees) we quit going to them and decided to go to the emergency room. All they were ever able to say about anything was that my sed rate was elevated. (still not sure what sed rate is) I was told to seek the help of an epidemiologist for testing on my auto immune system which showed up positive for rheumatoid but negative everything else. Each time I would go to the emergency room my range of motion was -0- and it would last exactly 3 days. The first day it would be really sore then the second day it would be so bad that I could not move at all. And to top all that off I couldn't take any anti-inflammatory medications so all they would do is give me Tylenol 3 w/codeine for the pain. I then waited the 3 days and returned to normal. I have had repeated bouts of deep vein thrombosis(clots) therefore am now on coumadin for the rest of my life - which is why I can't take most medications that would normally help. It was after being diagnosed with PA that I started taking predisone but in extremely low dosages. With the introduction of Vioxx I was able to

take it with relative safety and I began to get back to a "normal" life. I still had pain, pretty much consistently, but not debilitating. When you can't take anti-inflammatory drugs you develop an extremely high pain threshold. However after a 1 1/2 years of taking it twice daily ( the supposed 1 pill for 24 hours did not work) I thought I was becoming immune so the doctor switched me to Celebrex. I went an entire week of not being able to use my hands at all for anything before going off the Celebrex. I am glad it works for some people but it definitely does not work for me--I am back on Vioxx 2x daily and heavier doses of predisone. I am sorry to ramble on like this-- basically I just wanted to thank Jay because up till now I thought I was crazy with the chest thing and for some unknown reason all the doctors that I have seen when my chest/ribs flared up, after ruling out a pulmonary embolism have argued that it couldn't have been from the psoriatic arthritis and I go to teaching hospitals!!! Needless to say I will be informing my doctors otherwise. I had to be hospitalized when the attacks occurred in my chest and go through lung scans that never showed anything was wrong with me. I thank all the people who contribute to this e-group. You have all had a major effect (in a good sense)on my mental health. Now I wonder if anyone else ever went to a psychiatrist because they thought they were experiencing sever depression due to the PA because I have been going for almost 2 years because manic depression also in my family and I was scared that I was the same route due to severe attacks of depression. Well, I guess I took enough of your time. In closing, you all have my sincere THANKSSSSSSSSSSSSSSSSS

[Guest guest]

Hi Judy

Thanks for your info. I am now down to 15 mg and wishing for a few days ago!

But I am still better than I was before the Prednesone, so who knows.

Rev. Mitch McVeigh

St. 's Presbyterian Church, Aurora, ON

Rev.Mitch@...

ICQ 5055914

P.S. Don't forget to visit the Hunger Site today and every day.

Every time you do you feed a few hungry people somewhere in the world.

http://www.thehungersite.com

http://health. visit this site and $1.00 will be donated by to

find a cure for Breast Cancer. It doesn't cost you anything but a little time.

http://www.EndCancerNow.com to raise money for all cancer reasearch through the

American Cancer Society.

http://www.Christssafetynet.com my SAFE site for kids who love Christ and want

to enjoy the internet without worrying about inappropriate banners and adds.

http://www.geocities.com/Heartland/Shores/6710/index.html my personal website

Have a virus? Check http://www.antivirus.cai.com ITS FREE and WORKS

[Guest guest]

thanks ; Just knowing others have/or are going through this helps,

although I wouldn't wish this on anyone! I guess I am lucky as I read these

notes that I am in Canada, and doctor costs are pretty much covered. I also

have a pretty decent health plan for meds, so I know I am very fortunate. I

really don't know how you do it in the States. Thanks for your info. Mitch

Rev. Mitch McVeigh

St. 's Presbyterian Church, Aurora, ON

Rev.Mitch@...

ICQ 5055914

P.S. Don't forget to visit the Hunger Site today and every day.

Every time you do you feed a few hungry people somewhere in the world.

http://www.thehungersite.com

http://health. visit this site and $1.00 will be donated by

to find a cure for Breast Cancer. It doesn't cost you anything but a little

time.

http://www.EndCancerNow.com to raise money for all cancer reasearch through

the American Cancer Society.

http://www.Christssafetynet.com my SAFE site for kids who love Christ and

want to enjoy the internet without worrying about inappropriate banners and

adds.

http://www.geocities.com/Heartland/Shores/6710/index.html my personal

website

Have a virus? Check http://www.antivirus.cai.com ITS FREE and WORKS

[Guest guest]

ÿþ

[Guest guest]

In a message dated 23/04/01 09:48:49 GMT Daylight Time, paula_bking@... writes:

.. Would shot in this joint help? What type of doctor should I go to? I am at a loss and having to search the web for treatments. Help!!!!!!! I'm too young to be old.

Hi a,

I think this is one for your Doctor/Specialist to advise you on.

If you are not seeing one, then you should make an appointment to see one. You could have the necessary tests done then. At least it will put your mind at rest.

Mike (from the UK)

[Guest guest]

In a message dated 23/04/01 10:06:12 GMT Daylight Time, momscmbc@... writes:

Now I wonder if anyone else ever went to a psychiatrist because they thought they were experiencing sever depression due to the PA because I have been going for almost 2 years because manic depression also in my family and I was scared that I was the same route due to severe attacks of depression.

Hi,

Yes, I have been to one !! When I was first diagnosed.

I was really depressed, and I suppose she did help a bit. But, I had to 'pull' myself together over time. Not easy !!

Mike (from the UK)

[Guest guest]

In a message dated 04/23/2001 4:48:47 AM Eastern Daylight Time,

paula_bking@... writes:

<< What type of doctor should I go to? I am at a loss and having

to search the web for treatments. Help!!!!!!! I'm too young to be

old.

>>

Hi a - sounds to me like you need a good rheumatologist. Unfortunately,

I don't think there is any test to prove you have PA, only tests to rule out

other things like Lupus and RA.

We're all too young to be old on here - somedays 40 years feels like 140!

Good luck!

[Guest guest]

In a message dated 04/23/2001 5:06:10 AM Eastern Daylight Time,

momscmbc@... writes:

<< Now I wonder if anyone

else ever went to a psychiatrist because they thought they were experiencing

sever depression due to the PA because I have been going for almost 2 years

because manic depression also in my family and I was scared that I was the

same route due to severe attacks of depression. >>

Hi Sharon - no I haven't, but depression is very definately a side effect of

PA.

[Guest guest]

WELCOME PAULA

I WOULD SUGGEST CONSULTNG WITH A RHEUMATOLOGIST. GOOD LUCK TO YOU

[Guest guest]

Yesterday I could barely walk and today it is worse with tenderness

around the joint with limited movement. Would shot in this joint

help? What type of doctor should I go to? I am at a loss and having

to search the web for treatments. Help!!!!!!! I'm too young to be

old.

Hi a,

I have the same problem with the ankle joint and, unfortunately, it can't

take an injection without rupturing the achillies tendon. I was told to

treat it like bursitis and that didn't work. Finally I was put on

prednisone tablets and it eventually went away. Problem is, when you come

off the prednisone it comes back Welcome to our world!

[Guest guest]

In a message dated 06/05/01 09:12:33 GMT Daylight Time, riverross99@... writes:

.. We live in Michigan and are wondering if anyone has a good doctor to recommend (holistic/homeopathic or otherwise) that could shed new light on the situation. I read through a number of the email exchanges and he seems to have many of the same symptoms that most of you do- fatigue, pain, frustration. Thanks in advance to anyone who can help!

Hi,

I can't really help you, as I live in the UK ! but I am sure someone will come along, (when the posts finally sort themselves out !!), and help.

BTW - Welcome !

Mike (from the UK)

[Guest guest]

In a message dated 5/6/01 3:12:30 AM US Eastern Standard Time,

riverross99@... writes:

<< We live

in Michigan and are wondering if anyone has a good doctor to

recommend (holistic/homeopathic or otherwise >>

I think about 2 weeks ago, someone posted some doctors from MI. In my

opinion, maybe it's time for your husband to try some DMARDS as I didn't see

that on the drugs you listed (Disease Modifying something something something

is what DMARDS stands for - big help there LOL) Basically, drugs to lower the

overactive immune system. But I think he should see a rheumatologist for

that.

How wonderful of you to find out all this information for your husband -

shows how supportive you are. Keep it up. He needs that.

Take care,

[Guest guest]

Hi Stuart, I also have PA and I am in the UK and I totally agree with you

when you say some of the Doctors here do not want to tell you anything. ESR

is the level of disease activity that you have, it tells them (your

rheumatology clinic or GP) how your PA is behaving at the moment, my last

ESR was 175 and before that it was 200 (high). I go to my local hosp every 6

mths, I always find it next to impossible to get them to explain the results

(they just say everything's ok). Don't know what IgA is?? I have a little

results booklet that the docs fill in a week after I have the bloods done,

it's scary looking at the figures, but I assume if there's a prob they call

you in (I hope!). I have PA affecting my knees, right hip, hands (more

left), toes. Different parts flare-up at different times. I had psoriasis

since I was about 6 or 7, then had knee probs when I was 16 but it took till

I was 28 (after a pregnancy) before they referred me to a Rheumatologist who

diagnosed PA. Welcome to the list, I find it really useful, I haven't found

any useful 'places' to get info from in connection with the UK (it's very

poor). Ah well.

[ ] New member

> Hi, my name is Stuart and I was diagnosed with psoriatic arthritis

> about 5 years ago. It affects my hips mainly but also most of my

> other joints to varying degrees.

> I am interested in finding out as much as I can about the disease and

> talking to others with the same condition is probably the best way.

> Here in the UK some doctors don't seem to want to tell you anything

> about PA, I don't know why, but all I have learned about the disease

> has been from the internet.

> Some specific questions I have include, " Why can't the doctors tell me

> which type or types of PA I have? " ,

> " what is ESR? " ,

> " What is IgA? " .

> Any info would be gratefully received.

> Thanks

> Stuart

>

[Guest guest]

Thanks for the reply ,and thanks for the info on ESR. I knew I had been

tested for it but didn't know what it was or what the results had been. Your

figures will at least give me a benchmark if I ever find out what my results

were.

You mentioned that different areas flare up at different times. That is

something which I am baffled by, why one day can be completely different to the

next.

From what you said, I am assuming you are taking methotrexate or a similar drug?

If so,how have you found the side effects? They wanted me to take it last year

but when I read about the possible side effects I said no thanks.

Have they told you which type of PA they think you have? I just found out today

that they think I have the sponylitis type.

I'm pleased they told me but it has raised more questions for me.

But hey, still smiling!

Thanks again.

Stuart

[ ] New member

> Hi, my name is Stuart and I was diagnosed with psoriatic arthritis

> about 5 years ago. It affects my hips mainly but also most of my

> other joints to varying degrees.

> I am interested in finding out as much as I can about the disease and

> talking to others with the same condition is probably the best way.

> Here in the UK some doctors don't seem to want to tell you anything

> about PA, I don't know why, but all I have learned about the disease

> has been from the internet.

> Some specific questions I have include, " Why can't the doctors tell me

> which type or types of PA I have? " ,

> " what is ESR? " ,

> " What is IgA? " .

> Any info would be gratefully received.

> Thanks

> Stuart

>

[Guest guest]

In a message dated 08/21/2001 2:58:46 AM Eastern Daylight Time,

stulaz@... writes:

<< That is something which I am baffled by, why one day can be completely

different to the next. >>

Stuart - Who know why we have good days and bad? Mine don't seem to be

affected by weather or medication or anything other than by the " mind of it's

own " my joints seem to have.

As far as MTX, yeah, the side effects are nasty for some people. Until

recently though, I had very few problems and I've been on it 2 years. I'm

hoping to start Enbrel soon as the MTX is causing a slight liver problem and

I'd rather get off it than have to have a liver biopsy.

Hope today is one of the good ones,

[Guest guest]

Hi -- I haven't been able to tie this one down definititively, but certain

foods seem to trigger bad days for me. Among the known culprits are cooked

tomatoes in any form and hard yellow cheese. Suspected are pork, potatoes,

chocolate, sugar and red wine. These are things I think I may be sensitive to

and when I eliminate them from my diet I get almost instant relief. You may have

food sensitivities you're not aware of. Keep a journal and see what the days

prior to a bad day have in common.

Jan O'

TADEL630@... wrote:

> In a message dated 08/21/2001 2:58:46 AM Eastern Daylight Time,

> stulaz@... writes:

>

> << That is something which I am baffled by, why one day can be completely

> different to the next. >>

> Stuart - Who know why we have good days and bad? Mine don't seem to be

> affected by weather or medication or anything other than by the " mind of it's

> own " my joints seem to have.

[Guest guest]

Hi . Keeping a record of when you feel worse will give some indication of

what affects your condition. I read a posting on this site today that said a

liver biopsy is not too bad. I have also been reading some concerning things

about enbrel, like how the FDA are thinking of withdrawing it. Sod's law isn't

it. As soon as a drug comes along that seems to have brilliant effects on

arthritis sufferers, concerns about it's safety arise.

Today has been one of the better ones, thanks.

Stuart

Re: [ ] New member

In a message dated 08/21/2001 2:58:46 AM Eastern Daylight Time,

stulaz@... writes:

<< That is something which I am baffled by, why one day can be completely

different to the next. >>

Stuart - Who know why we have good days and bad? Mine don't seem to be

affected by weather or medication or anything other than by the " mind of it's

own " my joints seem to have.

As far as MTX, yeah, the side effects are nasty for some people. Until

recently though, I had very few problems and I've been on it 2 years. I'm

hoping to start Enbrel soon as the MTX is causing a slight liver problem and

I'd rather get off it than have to have a liver biopsy.

Hope today is one of the good ones,