Introduction

[Guest guest]

Hi fellow list members,

My name is . I am a 38 yo wife and mother of three (8,10 & 12). I

live in

Connecticut. I have had psoriasis since the age of ten, psoriatic arthritis

since

my teens and Sjogrens Syndrome for the last ten years. I also have vasculitis

and have had a TIA and a Pulmonary Embolism.

Two of my children have psoriasis already. I am praying that it remains mild

and also for no arthritic involvement.

Over the past six years, the PA has been so severe that I have needed

treatment with DMARDS such as Neoral, Cyclosporin A, Azulfidine, Methotrexate,

Plaquenil, Imuran et al. I have had varying success for varying

lengths of time with them alone or in combination. Pain management has

been a struggle at times, as has been my ability to handle the extreme fatigue

and the life changes I have to make when my health status changes

(frequently). With the support of God, my friends and family , as well as

cyberfriends who understand, I have been able to adjust fairly well to the

uncertainties of autoimmune disease. I am very grateful for just having had

a relatively pain free summer with my three children - the first one in five

years

where I did not need hired help to help me care for my own children . It was

wonderful, and we cherished every moment.

Currently, I am about three weeks into a moderate flare of the P, PA and

Sjogrens. Fatigue is the most debilitating of the symptoms for me this flare

around. Thank goodness, so far the pain has been tylenol manageable (major

miracle!)

I am looking forward to a nice relationship with you all on the list,

Sincerely,

[Guest guest]

I sounds as if you think you got psoriasis from sitting the same place

someone with psorisis had been sitting. You cant " catch " psoriasis like

chicken pox or a cold. It sounds like you had psoriasis as a small child

and have just been in remission for years. Of course, I am no doctor, nor

do I claim to be. But I was a nurse for years.

>

> Hi, my name is Kathy.

> Surfing, I found your list-it is good to know that I'm not alone. I had

> never met or known anyone with psoriasis or psoriatic arthritis until 3

> years ago. I know this sounds crazy but I think I know how I got it. I

> had been under a lot of stress for several years which meant that my

> immune system was not up to par - I was also sleep deprived for a long

> period. A person who worked at the same place I do had the first case

> of psoriasis I had seen. It was pretty bad over much of the body,

> especially the arms. I took her seat at the lunch table when she left

> and proceeded to accidentally hit my elbow on the table very hard.

> About a week later, what looked like a pimple grew on my elbow. It

> continued to grow and hurt until an area about two inches square became

> encrusted, fissured, and bled. I tried everything I knew but without

> any improvement. Don't remember too much about how I felt except that

> other joints started to ache. When I finally went to a doctor she said

> it probably was psoriasis but it was complicated by a bacterial

> infection. Got the infection under control but managed to spread the

> psoriasis to other areas. All I seemed to have to do to spread it is to

> self inoculate - if I touched my crusted and fissured elbow then

> scratched an area I would soon get a lesion in that area. Before I

> realized this I have spread it to my earlobes (I have pierced ears),

> back of knee and left eye. Later other lesions began to crop up on

> their own. According to pictures I have seen I have three of the five

> types of lesions. Have been the doctor route. Got up to 2400mg IBU per

> day without relief; tried methotrexate until I got mouth sores and

> decided to quit after 3 months because the side effects were getting

> worse without any relief from symptoms. Lost track of how long I was on

> prednisone didn't help a whole lot. I have an outside job - the sun

> doesn't help either. Went off all drugs about a week and a half ago and

> have decided to start all over. It was hell-I didn't think I would make

> it. But today I actually hurt less. Have had some luck with an over

> the counter skin cream called Skin Cap. Taking glucosamine/condroitin

> for joints. High potency vitamin for general health and milk thistle to

> help my liver heal after all I put it through. Will let you know how

> this works out. As a child I had an unexplained outbreak of a skin

> condition which was completely cured when my mother took me to soak in

> the ocean. Would be interested to know if any of you that have

> psoriasis have tried soaking, for as long as you can stand it, in the

> ocean and what results you had. I read in a natural health book that it

> is recommended for psoriasis. Unfortunately I live in the mid-west now

> with no ocean available.

> I hope I haven't bored everyone with my experiences. Reading your

> histories, it sounds like we are all still searching for an answer and

> by comparing notes and experiences maybe we can help the doctors to find

> one.

> Bless us all.

> Kathy

>

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

> To unsubscribe from this mailing list, or to change your subscription

> to digest, go to the ONElist web site, at and

> select the User Center link from the menu bar on the left.

[Guest guest]

Hi Kathy and Welcome!

I have heard of soaking in salt water, more specifically, from the Dead Sea.

They sell bagged salt from the Dead Sea in pharmacies in Germany. I didn't

have any luck though. Right now I'm alternating between Dovonex, Temovate, and

Lidex. I am finally seeing some improvement, but I think it's from the

methotrexate? Who knows with the way it just comes and goes..........

I don't know how I " got " ps. I do know that it's not contagious. You're

probably right about getting it from injuring yourself on the table. I

believe this is called Koebner (sp) syndrome. I didn't have anything to do

with who sat there before you, or whether or not they had psoriasis. I know

that my father and I got it at the same time, I was 14 and he was in his 37.

My theory is that maybe we both had strep throat? Aagain, who knows?

Well, that's all for today. Take care.

Trish

[Guest guest]

Hi Kendrick, My husband and I leave for Ireland, England and Paris the 15th,

but will be in touch with you when we get back on 27th. Take care. Betty

[Guest guest]

Welcome Kendrick! It's good to see you here!

Trish

[Guest guest]

Hi Sonya My name is Another Lymee. I just want to write to you with

some comments and questions about your condition. Are you taking the

amoxicillin with probenicid? If not ask your doctor about it because it can

greatly help that particular antibiotic. I also always get great body aches at

the start of an antibiotic and I know it is the herx thing but it seems to be

continuing and I feel worse than before the antibiotics. How long did you feel

worse before better and how long did your herx's last were they constant day

to day or pattern forming weekly monthly etc. I would love to hear from you

and best of health to you!

[Guest guest]

In a message dated 11/2/98 5:10:17 AM Hawaiian Standard Time,

maschubert@... writes:

<< Rib/breastbone pain is annoying. >>

Welcome to the group Ann! I also have a rib in my back affected and my

breastbone. These seemed like such strange places to get arthritis.....it

took a while before I even mentioned them to my rheumy.

Take care!

Trish

[Guest guest]

Hi Everyone,

Hope you are feeling as good as I am this evening. Probably the calm before a

flare. Seems when I have a really great day , then next day is just yucky.

There are so many new meds on the market. What do you think? Did you read the

latest addition of Arthritis Today?

Don't you just feel they are close to a " cure "

I sure hope so for us all.

How do you feel about Enbrel. Is anyone considering this so called wander

drug?

Kit

[Guest guest]

Kit,

Your note perked me up. I have been having a few bad days. A lot of

lesions popping up and just feeling like a truck ran over me. Saw my

Rheumy today and it is ironic you said something about coming close to a

cure cause we were discussing just that. She said they have come out

with new meds for RhA, Osteo and Scleraderma that are really helping

but not PA yet. Kinda bummed me out.

Next month when I see her I am going to ask her about Enbrel. I have

never heard of it and she never made any mention of it. I am willing to

try anything about now. I am taking Methotrexate and it just seems like

it has stopped working.

I am really glad you are feeling so good.

Stay well.

Angera

[Guest guest]

Hi Angera,

Good to hear from you. Don't lose your spirit. You'll get over this challange.

I am no doc but from when I stand the drugs that help Ra help PA. I see not

difference. I know about the Rh factor. But for our meds that makes no

difference.

Both are inflamatory diseases and both can be very destructive.

The way I make sence of all of this is that there is Osteo arthritis and the

inflamatory types likes us and the RAs and many others.

MTX was tried on RAs then on us and it seems to have the same kind of results

in both. Works for some and not for others. What else is new.

I was surprised to hear that MTX has stopped working for you.

Do you know the reason?

How long have you been on it and at what dose.?

Just nosey.LOL

Not really! Just interested .

You can write me any time . I am really interested in hearing from anyone with

PA. and the meds that helped or the ones that didn't. I guess I will hear from

more people that way.LOL

I am a new kid on the block who is still on NSAIDS for the time being. The

heavy duty stuff may come sooner than I think .

Oh I forgot, I am taking oral gold . I guess that qualifies me for honorable

mention for some DMARDS.

I have been on it for about two months so I hope it does some good.

Still curious about Enbrel from new users.

Hope no one was blown away with Mitch.

Good health to all and a cure soon.

Kit

[Guest guest]

[This message contained attachments]

[Guest guest]

Hi Kit,

Feeling a little better today. I think my monthly prednisone injection

is finally kicking in.

I have been on MTX for about 7 or 8 years. And the dosage is 2.5 mg

alternating 2 one week then three the next. My Rheumy and I think my

problem is that we cannot get above the 3 tabs a week without an

outbreak of cold sores, sores on the tongue, bladder infections (oh what

fun they are) and elevated liver counts. So I have been on the same

dosage for so long we think this is as good as it is going to get. But

we keep trying. We also tried Sulfazalizine (sp?), no good, did

absolutely nothing.

I am also on NSAIDS Dolobid. I have been on so many of these also. It

seems I am on them for about 1 or 2 years and then they just stop

working. BUT, so far, I have been on Dolobid for 3 years and it is

really helping take the edge off. Keeping my fingers crossed.

The first treatment my Rheumy started me on was the oral gold. It was

helping very much until the dredded diahrea set in. Did your Dr. tell

you of that lovely side affect? It used to be so funny whenever we went

somewhere, we had to scope out where the restrooms were and how far away

I could be from them. Because when it hit, it hit and there was no

stopping me. We used to ask for seats near the restrooms when we would

go to a restaurant and the looks we would get. I chose to take myself

off of it cause it was just running (ha that's a play on words) my life.

Hope all goes well for you on the treatment.

I have something that might be of interest to you, if you aren't already

subscribed to it. It is a Health News site called Planet Health

Reuters. And I mention this because a couple of days ago there was an

article about Enbrel in it. I find it pretty interesting. It is about

all kinds of health issues. I am also a heart patient and I research

everything I can get my hands on. If you are interested the URL is

ReutersNews@....

One more thing. Never be afraid to ask me questions. I love to talk,

as you can tell from this post. And I don't feel like you are being

nosey. Like you said, you are a new kid on the block, how are you going

to find out new things if you don't ask.

Stay well. Will talk soon.

Angera

[Guest guest]

Char,

Not only is is bad news for us PA sufferers, but I just read the post on

Enbrel and the price per injection. Not very good news if you don't

have good insurance coverage. Kinda pricey right now.

Thanks for the info.

Angera

[Guest guest]

Conrad,

No, I have never heard of Megaflex.

Pass on the info. I am always open for suggestions.

Thanks.

Angera

[Guest guest]

(A.M.S.) wrote:

>

> Hi Kit,

>

> Feeling a little better today. I think my monthly prednisone injection

> is finally kicking in.

>

> I have been on MTX for about 7 or 8 years. And the dosage is 2.5 mg

> alternating 2 one week then three the next. My Rheumy and I think my

> problem is that we cannot get above the 3 tabs a week without an

> outbreak of cold sores, sores on the tongue, bladder infections (oh what

> fun they are) and elevated liver counts. So I have been on the same

> dosage for so long we think this is as good as it is going to get. But

> we keep trying. We also tried Sulfazalizine (sp?), no good, did

> absolutely nothing.

>

> I am also on NSAIDS Dolobid. I have been on so many of these also. It

> seems I am on them for about 1 or 2 years and then they just stop

> working. BUT, so far, I have been on Dolobid for 3 years and it is

> really helping take the edge off. Keeping my fingers crossed.

>

> The first treatment my Rheumy started me on was the oral gold. It was

> helping very much until the dredded diahrea set in. Did your Dr. tell

> you of that lovely side affect? It used to be so funny whenever we went

> somewhere, we had to scope out where the restrooms were and how far away

> I could be from them. Because when it hit, it hit and there was no

> stopping me. We used to ask for seats near the restrooms when we would

> go to a restaurant and the looks we would get. I chose to take myself

> off of it cause it was just running (ha that's a play on words) my life.

> Hope all goes well for you on the treatment.

>

> I have something that might be of interest to you, if you aren't already

> subscribed to it. It is a Health News site called Planet Health

> Reuters. And I mention this because a couple of days ago there was an

> article about Enbrel in it. I find it pretty interesting. It is about

> all kinds of health issues. I am also a heart patient and I research

> everything I can get my hands on. If you are interested the URL is

> ReutersNews@....

>

> One more thing. Never be afraid to ask me questions. I love to talk,

> as you can tell from this post. And I don't feel like you are being

> nosey. Like you said, you are a new kid on the block, how are you going

> to find out new things if you don't ask.

>

> Stay well. Will talk soon.

>

> Angera

>

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

> [image]Dear Angera,

Have you ever heard of Megaflex? It is an all natural solution for

Arthritis suffers. I take it daily and it keeps my Arthur in check.

The best part is there are NO SIDE EFFECTS. If interested, e-mail me

back.

Conard

[Guest guest]

Thanks for the info on Megaflex.

Angera

[Guest guest]

(A.M.S.) wrote:

>

> Conrad,

>

> No, I have never heard of Megaflex.

>

> Pass on the info. I am always open for suggestions.

>

> Thanks.

>

> Angera

>

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

> [image]Dear Angera,

Megaflex is made by a company called, " Achievers Unlimited " . The

products are formulated by a 12th generation herbalist who escaped from

communist China in the 60 " s. This particular product, Megaflex, has been

a secret formula dating back a couple of hundred years and was just

introducted by Achievers last year. You can visit the Achievers web site

at: www.achieversunltd.com

If you have time, check out the web page. Also, if you want, I can mail

you a brochure on Megaflex which gives more details on whats in it. Just

send me your address, or if you prefer, you can order a bottle off the

web page. One of the truly great things about the Achievers products is

their 30 day money back guarantee ON ALL THEIR PRODUCTS. If you are not

100% satisfied, even after taking the whole bottle, you can get a full

refund of your money. They stand behind their products. I have been

taking them for over three years on a daily basis and they work as

advertised. If you want to try a bottle, you will need a distributor's

ID number: 28597446

I am not trying to just sell you a bottle of product because one more or

less makes no big difference money wise, BUT if it helps you with your

problem and gets you away from all the drugs you are taking and gives you

better quality life, then thats my greatest reward.

Thanks for listening.

Conard L. Kennedy

n, Ill.

[Guest guest]

Hi Angera

I am still perservering on oral gold and have been on it for two months.

For the past two weeks I have had very little aching and have had a " norma' "

life. Today I had the aches and all that goes with it.

The doctor said that oral gold takes a long time to kick in . Sometime it

takes as long as six months .

How long were you on oral gold before you saw any changes?

Should I be expecting anything in two months or was that just a fluke that I

was pain free for a couple of weeks.?

Kit

[Guest guest]

Pat,

Welcome to the group. It is a great bunch of people that helps you feel

that you are not alone with this disease. I love it. A lot of times I

am a lurker then other times I just can't keep quiet.

How fortunate you can still work. I had to retire about 2 1/2 years ago

because I just could not function anymore. And I had a desk job. I was

an office manager (no one else in the office but me) at a School

District in CA in the Maintenance Dept., Grounds Dept. Transportation

Dept. and Police Dept. It just simply wore me out. So it was early

retirement and SSDI for me. Now I am a stay at home wife, and grandma,

and loving every minute of it. But at times I do feel worthless not

being able to do the things I used to do.

So welcome aboard and looking forward to hearing from you.

Angera

[Guest guest]

Hi All

I've posted here before and have been in this group maybe 2 months; please

excuse me for not having officially introduced myself before.

I'd like to introduce myself. I've been very sick for over 6 1/2 years. I

was treated 1993-1994 for 1 year with only oral abx---was told by other md's

that no way I still have lyme and should stop treatments---; I only got herx

but no improvements so I stopped.

Recently, I found out that I still have lyme. My MD is not overly hopeful

that I can be helped because of my past experience. He says his patients say

he is generally pesimistic, but he has had good successes with his patients.

I've learned from this group that each patient is different and something may

eventually help me.

lea

[Guest guest]

Hi Lea,

Lurkers are welcome on this list, so need to apologize for not posting. I

say that because, not all of us feel like posting when we are really ill,

but like to read what others are saying and going through. This helps to

keep us from feeling really alone. I am sorry to hear that you have

relapsed with Lyme. The fact that you were herxing while still on

antibiotics should have been a clue, but sounds like the doctors you were

seeing were uninformed. It does appear that there is no magic bullet yet to

cure any of us with Lyme and I marvel at the different protocols and

medicines people on this list are trying. Many are fortunate that they have

MD's who will agree to experiment with different dosages and drugs, some of

us are not. I see a Lyme literate doctor (he has Lyme himself) but I cannot

get him to try some of the drugs I see here, i.e.: Flagyl, IV, and even

Bicillin injections. I guess my doctor would be considered apathetic as

opposed to pessimistic. Guess it is time to try to find another. Good luck

with yours!

Marta

>From: Memyo@...

>

>Hi All

>

>I've posted here before and have been in this group maybe 2 months; please

>excuse me for not having officially introduced myself before.

>

>I'd like to introduce myself. I've been very sick for over 6 1/2 years. I

>was treated 1993-1994 for 1 year with only oral abx---was told by other

md's

>that no way I still have lyme and should stop treatments---; I only got

herx

>but no improvements so I stopped.

>

> Recently, I found out that I still have lyme. My MD is not overly

hopeful

>that I can be helped because of my past experience. He says his patients

say

>he is generally pesimistic, but he has had good successes with his

patients.

>I've learned from this group that each patient is different and something

may

>eventually help me.

>

>lea

[Guest guest]

Hi Lea,

Welcome. Sorry to hear that you have been sick so long. Me too, 5 1/2

years. I have been on antibiotics all that time. I get herx's, but I also

slowly get well. It is such a slow progress that you almost can't tell from

one day to the next, especially since you have herx's in between. Go back on

antibiotics and educate yourself and your doctor.

They need all the help they can get.

Hugs and feel better,

Connie

[Guest guest]

In a message dated 3/22/99 6:49:10 PM Eastern Standard Time, Cslyme@...

writes:

> Hi Lea,

> Welcome. Sorry to hear that you have been sick so long. Me too, 5 1/2

> years. I have been on antibiotics all that time. I get herx's, but I also

> slowly get well. It is such a slow progress that you almost can't tell

from

> one day to the next, especially since you have herx's in between. Go back

> on

> antibiotics and educate yourself and your doctor.

> They need all the help they can get.

> Hugs and feel better,

> Connie

HI Connie

thank you for your words of encourgements and post; sorry to hear that you've

been sick so long. I hope you continue with the improvements but at a faster

pace.

thanks again

lea

[Guest guest]

In a message dated 3/22/99 4:03:36 AM Eastern Standard Time,

mlmccoy@... writes:

> Hi Lea,

> Lurkers are welcome on this list, so need to apologize for not posting.

I

> say that because, not all of us feel like posting when we are really ill,

> but like to read what others are saying and going through. This helps to

> keep us from feeling really alone. I am sorry to hear that you have

> relapsed with Lyme. The fact that you were herxing while still on

> antibiotics should have been a clue, but sounds like the doctors you were

> seeing were uninformed. It does appear that there is no magic bullet yet

to

> cure any of us with Lyme and I marvel at the different protocols and

> medicines people on this list are trying. Many are fortunate that they

have

> MD's who will agree to experiment with different dosages and drugs, some of

> us are not. I see a Lyme literate doctor (he has Lyme himself) but I

cannot

> get him to try some of the drugs I see here, i.e.: Flagyl, IV, and even

> Bicillin injections. I guess my doctor would be considered apathetic as

> opposed to pessimistic. Guess it is time to try to find another. Good

luck

> with yours!

> Marta

Hi Marta;

thank you for your post. I hope that you find a doctor who can try some of

the meds you wish to try. Actually, I've not relapsed with lyme, I've just

been virtually bedridden since 1992 (just seeing misinformed docs) and not

seeing the right docs or given the right encouragements etc.

thanks again

lea

[Guest guest]

Hi ,

Ever one is different. But, I think you must believe that you will get

better. If not. I think the illness has won. I was very very sick with lyme

at a young age. I believe with the help of good doctors and a postive attiude

I became well enough to function for 7 years. I just relasped this July I

havent been able to work since then. But I know I will once again regain my

life back. EVERYONE on this list should believe that they will get well

enough to funtion again. Never say NEVER or FOREVER!!!! Nothing is forever.

It may seem like it but its not. My doctor who is very LLMD believes that a

postive attiude is key. I know it's hard sometimes , but we all have to try!!

Having hope is keeping me going. feel better and think POSTIVE!!!!!!!!!!

Feel better,

christine