New Member

[Guest guest]

Hi ann,

Nice to " see " you back.

Trust all is going well for you.

Diane

At 01:10 AM 9/11/99 EDT, you wrote:

>From: Jab44419@...

>

>Patrica H,

>I have breast cancer and would like any information you have on research or

>immune builders.

>Thanks

>ann

>

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

[Guest guest]

So far so good, I have been moving and traveling with my son. I feel good

and am still doing all my herbs and homeopathics. Anything new with you?

Ann

[Guest guest]

Hi Ann,

Nothing new here. Still doing the same thing as well. Feel great.

Have a perfect Sunday.

Diane

At 12:28 AM 9/12/99 EDT, you wrote:

>From: Jab44419@...

>

>So far so good, I have been moving and traveling with my son. I feel good

>and am still doing all my herbs and homeopathics. Anything new with you?

>Ann

>

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

[Guest guest]

Just got my email program fixed. I'd be glad to send you information I

have. Just email me your mailing address and I'll get it out within a day.

Part of what I was using included several immune builders. I'm not sure

where you came in, what posts you have read so far. I'd be glad to fill you

in.

Did you happen to catch the post about the Dr. speaking in CO, IA, and

MN, this week about his research with cancer? If not, and you live near

one of the cities, I'd be glad to email you the info. Looking forward to

hearing from you.

H.

Re: [ ] New Member

>From: Jab44419@...

>

>Patrica H,

>I have breast cancer and would like any information you have on research or

>immune builders.

>Thanks

>ann

>

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

[Guest guest]

In a message dated 9/13/99 2:47:38 PM Central Daylight Time,

leilani@... writes:

<< We have tried a plasma machine, essiac, and are now trying many herbs and

immune building substances to help her body fight this disease.

If anyone can help me I am in your debt.

Thank you,

Sincerely,

Leilani & Mikayla >>

There is a book called Your Child Doesn't have to Die by Leannne

Sortaberg(sp?).

It's how this woman saved her child after he had gone thru the same things

your child has. For more info try contacting Modern Manna Ministries

209-334-3868.

If you could speak with Danny and tell him what you wrote to the list.

Edith

[Guest guest]

I also missed the information about Dr. speaking in CO and MN. Would you

re-broadcast please?

Sandy

----Original Message Follows----

From: " H " <1eagles9@...>

Reply- onelist

< onelist>

Subject: Re: [ ] New Member

Date: Mon, 13 Sep 1999 11:24:22 -0500

From: " H " <1eagles9@...>

Just got my email program fixed. I'd be glad to send you information I

have. Just email me your mailing address and I'll get it out within a day.

Part of what I was using included several immune builders. I'm not sure

where you came in, what posts you have read so far. I'd be glad to fill you

in.

Did you happen to catch the post about the Dr. speaking in CO, IA, and

MN, this week about his research with cancer? If not, and you live near

one of the cities, I'd be glad to email you the info. Looking forward to

hearing from you.

H.

Re: [ ] New Member

>From: Jab44419@...

>

>Patrica H,

>I have breast cancer and would like any information you have on research

or

>immune builders.

>Thanks

>ann

>

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

[Guest guest]

Greetings,

This is my first time dealing with a list of subscribers, patience is

requested.

My name is Leilani and I am in search for any information in hopes of

curing my daughter Mikayla. Mikayla was born with rhabdomyosarcoma

aveolar. We have gone through the gambit of chemo therapy twice,

radiation therapy both conventional and proton therapy. She has had

numerous surgeries for resection of new growths. Her last, being Sept.

1st. 6 days later after this procedure, I have discovered another tumor

on her rib cage. Rhabdo is extremely fast growing, time is crucial.

We have tried a plasma machine, essiac, and are now trying many herbs and

immune building substances to help her body fight this disease.

If anyone can help me I am in your debt.

Thank you,

Sincerely,

Leilani & Mikayla

----------

> From: Jab44419@...

> onelist

> Subject: Re: [ ] New Member

> Date: Saturday, September 11, 1999 9:28 PM

>

> From: Jab44419@...

>

> So far so good, I have been moving and traveling with my son. I feel

good

> and am still doing all my herbs and homeopathics. Anything new with you?

> Ann

>

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

[Guest guest]

Dear Leilani

So sorry about your struggle. I am fighting breast cancer under a very good

doctor, have you located a good Dr. or advisor to guide you naturally? What

area of the country are you in? I started with Dr. Schurtze bowel cleanse

and recommend bowel cleanse first, there are many good ones out there in good

health food stores. I eat no beef and only free range no hormone chicken,

veggies, juices, lots of vitamins, plant enzymes, 20,000mg. of vitamin c in

crystal form mixed with water. Drink only purified bottles water. Get

dental work looked at. GEt a book called " Definitive Guide to curing cancer "

by Dr. Cowden and read what the causes of cancer are, fix all that you can.

Hope any of this helps.

Sincerely

Ann

Tx

[Guest guest]

For those who missed the posting about Dr. Hsia's itinerary.

Thurs. Sept 16 2:00pm Greeley, CO

Best Western, Ramkota Inn

7:30pm Denver, CO

Red Lion Hotel

Fri. Sept 17 7:00pm Clear Lake, IA

Best Western/HolidayLodge

Sat. Sept 18 2:00pm Rochester, MN

Kahler Grand Hotel

7:30pm Minneapolis, MN

Radisson Hotel South, Norm.Blvd.

Dr. Simon Hsia will be speaking on his cancer research as well as

other research he has done. He also has given free consultations at

previous presentations, I believe he will be doing so at these locations.

If you are able to make it, please let them know that I referred you. Thanks

Hassell, RC WI

Re: [ ] New Member

>

>

> >From: Jab44419@...

> >

> >Patrica H,

> >I have breast cancer and would like any information you have on research

>or

> >immune builders.

> >Thanks

> >ann

> >

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

[Guest guest]

mary , i to live in nw nj (denville) and belong to a support group in

morristown ....as for finding a llmd who is accepting new pts....or taking

any one prior to december that could be a problem...if u would like either e

mail me privately rmcmur3194@... or u may call me at 627-0345.....

Reid

[Guest guest]

Hi ,

I too live in North Jersey.....Sussex County.......the closest lyme Drs.

are in NY or North Central Jersey......if you contact me personally, I can

email you about the Drs. I have seen........I've been suffering with Lyme

for a little over 4 years........and am currently feeling quite

well...........its a difficult disease.......and you have to find the right

Dr....who YOU feel is helping you.........it is not always wise to not see

a Dr. because a few people were not happy with their particular

treatment......searching is difficult.....and takes time........but you

have to find someone who is knowledgeable, and has treated many....and is

helping you........Connie nwnj

[Guest guest]

In a message dated 11/07/99 10:21:15 AM Eastern Standard Time, niklpn@...

writes:

<< I have only recently started searching for help/advice/support on the web,

so if I ask too many dumb or repetitive questions, I apologize. >>

Hi, - welcome to the list. Don't worry about asking questions - ask

as many as you need to! But there is a way to find out if we've addressed an

issue before. Go to the onelist site and find the

community. I believe if you look under " messages " once you're inside the PA

" community " , you will find a simple search engine. Use that search engine to

pull up past digests that include messages that address your topic. Hope

this helps!

Patty (34, mom of one)

[Guest guest]

> From: niklpn@...

> Subject: new member

>

> Hello,

> I would like to introduce myself, My name is I am a 31 yo nurse

>with PA, about 1 year now. I am no longer able to work, so it seems all I

>have is time. I have only recently started searching for

Hello, I am a 32 year old nurse with PA for the last 7 years. I, too, am

unable to work anymore because of this. I haven't worked since June, but I

still have hopes to go back. What kind of nursing do you do? I am a

certified oncology nurse. I am also a mom to two children , aged 7 and 9. I

would love to chat with you about our common struggles. Please e-mail me if

you wish or leave a note here, on the newsletter.

[Guest guest]

,

First of all, welcome to one of the greatest support groups I have found

for this horrible disease. And never feel that any question you ask is

dumb. This is how we all learn. Just keep asking. Someone will have

an answer for you.

I can't believe how this list has grown. I remember signing up and

there were only about 25 of us for the longest time. And now we have

grown close to 200.

I love reading every single post, every single day.

Again, welcome aboard.

Angera

[Guest guest]

Hi Angera

Yes I agree with you, this is an excellent supportive and informative site.

I only wish I had located it a few years ago, as many of my questions,

paranoid questions or so I thought, now seem sane and logical. I only wish

that perhaps we could all hold a PA convention, bring our own medical files

with us, and get involved in some medical research. I cannot believe that a

site like this with 190 members, has not come to the attention of some

medical researcher, and why to my knowledge NO research is being done on

this specific disease. I agree 190 is not a common disease, but with this

amount of patients so far, you would think someone would say, " I have the

patients, now I can do the research! "

Love and God Bless

Gillian

Re: [ ] new member

>From: caljersey@...

>

>,

>

>First of all, welcome to one of the greatest support groups I have found

>for this horrible disease. And never feel that any question you ask is

>dumb. This is how we all learn. Just keep asking. Someone will have

>an answer for you.

>

>I can't believe how this list has grown. I remember signing up and

>there were only about 25 of us for the longest time. And now we have

>grown close to 200.

>

>I love reading every single post, every single day.

>

>Again, welcome aboard.

>

>Angera

>

>>Please visit our new web page at:

>http://www.wpunj.edu/icip/pa

>

[Guest guest]

Hi, Marcus

I can empathize with you about being afraid after reading about some of the

more severe cases of PA represented on this list. I, too, was a bit put off

by that in the beginning, but I've found that the information and support

available here is very important to me.

Like you said, you have been diagnosed early. So have I, just this past

April to be precise. I vividly recall feeling very overwhelmed and

frightened out of my wits when I was newly diagnosed -I too am an active

person and I have a young son I want to care for.

Try to remember that everyone's disease is different. Educate yourself about

your disease. I have a bunch of netlinks I could forward to you via email

off list if you are interested, or try about.com or another search engine if

you like. The PA community at onelist.com also has a list of recommended

sites, I believe.

My RD also started me on an anti-inflammatory first. When that drug didn't

" cut the mustard " he started me on methotrexate, which operates to stop the

arthritis, not just suppress the inflammation caused by the arthritis. I

started seeing great improvement after about a month on MTX, and it's gotten

much better from there.

There are many other medications at your disposal that may help get your

arthritis under control, and there are more in the pipeline (Enbrel comes to

mind) that may be available to us PA-ers soon. It is a good thing that you

are being aggressive and going after the disease w/ the big guns early on.

Best wishes to you and your family. Keep us posted on that upcoming

appointment, ya hear?

Check out rxlist.com for all the information you could ever want about

Celebrex, too!

Patty

<< Reading about all your cases really scares me

because I really don't want to suffer the way many of you have. I am lucky

because I was diagnosed with this much more quickly than most of you. I

have only had these symtoms for the past 2 years. From what I have read

many of you have gone 10-20 years until you found out why you were

suffering. I have never had an outbreak of psoriasis. Is it unusual to

have PA and not P? Am I destined to have an outbreak of P?? My doctor

prescribed me a drug called celebrex. Can anyone tell me something about

this drug? My biggest concern is how this is going to affect my lifestyle.

I have always been a very active person. I hope this doesn't change that. I

just wish someone can shed some light on all of this for me.

Thanks for your time, I wish you all well

Marcus >>

[Guest guest]

Howdy Marcus,

>From another " newby " , welcome aboard!

> ... This disease is all very new to me

No matter how long some of us have had our problems

we continue to learn new things regularly.

> ... after reading about some of your

> cases I am a little scared.

Personally, I think it scares us even when we don't read

about how severe it can be for some, because we don't

feel " right " , " whole " , " self-sufficient " or " able bodied " at times.

> Until recently I was an able bodied young man.

> I'm 24 years old, I graduate from college in the spring, I'm recently

> married, I had always been athletic, and I just found out yesterday that I

> am probably suffering from PA.

Just look at the first of your list and see how blessed you are!!

Might I add, though, that some of these great things are

also stressful and stress seems to add to our problems. So we

must each learn to find peace within the eye of the storm. My

personal conviction is that I will find it with the Lord and His

infinite wisdom. He has promised us that we will not be given

more than we can withstand as long as we keep Him first in our life.

> My problems started 2 years ago when I began

> suffering from severe pain in my right ankle. After numerous

> X-rays, I was misdiagnosed as having tendonitis.

Now I'm beginning to understand some of the things I've heard from

some of the doctors I've seen over the years. The last time I heard

tendonitis was when I visited an urgent care center with a disabled

right thumb. The treatment was restful splinting and anti-inflammatories.

> My ankle pain subsided, and I thought everything was cool. Occasionally

> some minor pain would return, but it was nothing a little advil couldn't

> handle.

That's probably what many of us have experienced over the years --

pain and swelling that 'wanders' from one place to another. At least it

doesn't get boring.

> ... I was sent to a podiatrist who diagnosed me as having an extremely

> high arch and a very rigid achilles that was causing bone spurs on my

> ankles and also putting added pressure on my feet.

Did he explain how " having an extremely high arch and a very rigid

achilles that was causing bone spurs " happens? I'm very interested

because I've been having painfully tight achilles tendons and cramps

in my toes, feet and calves at various times. It gets truly interesting

to waken with cramps in BOTH legs and try to stand to pull them out!

> He gave me a cortisone shot in my foot

Ouch! Had one of those in a wrist once; not fun but it helped --

everything and everywhere.

> ... My mother-in-law drove to the doctor, determined to find out what

> was ailing me.

Another blessing! Nice to have people like that in your corner

instead of criticizing you for what you can't or won't do.

> ... Yesterday i went to the rheumatologist ...

> he said he is 85% sure I have PA. I won't know for sure until my

> next appointment

Do you know what will make him " sure " ? That's what I'd like to

learn so I can maybe enlighten my doctor.

> ... He wants to check some blood specimens to rule

> out any other scenarios.

Like rheumatoid arthritis? Or something else?

> I also need to get my spine x-rayed to find if

> have a genetic marker.

That's another term I've not heard before. Looks like

you'll be teaching some of us.

> ... I have never had an outbreak of psoriasis. Is it unusual to

> have PA and not P?

This has become one of my own queries because my three adult

children have arthritis like problems but not P. The two eldest

(30 & 34) are having a lot of neck problems that cause severe

headaches like I've had for years.

> ... My biggest concern is how this is going to affect my lifestyle.

> I have always been a very active person. I hope this doesn't change that.

My suggestion is that you maintain an open, positive attitude and make

adjustments when necessary rather than bitter, angry or combative.

> I just wish someone can shed some light on all of this for me.

Don't we all!

> Thanks for your time

That's what most of us have plenty of when we don't feel like doing

" other things " .

> I wish you all well

And for you, too.

Patty Bacon in the Pineywoods of East Texas

that's being blessed today with much needed soft, drizzly rain.

[Guest guest]

--- Janie Howington <jhowing@...> wrote:

> From: " Janie Howington " <jhowing@...>

> If anyone has experienced: tendon problems

> especially the feet;

Hi Janie, and welcome to the group.

Yes, I have feet problems. I had been to many doctors

of different types over the years and none of them

could figure out what was wrong with me. Finally I

had a tendon problem in my foot/ankle and the GP sent

me to a podiatrist. That guy took one look at my

sausage toes, bent up feet, and pocked toes nails and

told me I had psoriatic arthritis -- first time I'd

ever heard of the thing. I told him that " psoriasis

and arthritis did not even live in the same

neighborhoods, " but he sent me to see a rheumatologist

who confirmed his diagnosis.

Long story short, the rheumy put me on meds that have

made things much better for me. I am currently on

MTX, Enbrel, Ultram, and Celebrex, though I am

switching from the latter to Vioxx soon. Meanwhile,

the podiatrist fitted my feet for orthodic inserts and

the tendon problem has disappeared.

I don't have any feedback on disability or insurance.

I plan on working even if they have to tie me to my

chair, and I work for the State so I have good

insurance.

cheers --

, NJ Highlands

raharris@...

__________________________________________________

[Guest guest]

Did you stop the mtx, if so, why? I just started the mtx and hope it does

the trick. The pain in my feet is crazy. If it worked, why stop it? Blood

problems?

[ ] new member

>From: " Janie Howington " <jhowing@...>

>

>My first time on---I have lots of comments and questions, but I'll try to

keep a long story short. After years of trial and errors and Drs. patting

me on the head I was finally diagnosed with PA in 95 and put on MX. 8 wks

later my miracle occured and all pain in joints and tissues and all skin

sores evaporated!!! Fast forward to 99--minor problems started this year(a

few skin flares & tendon tightness). My job keeps me on my feet 10-14 hrs a

day and by November the pain in my feet was unbearable. Dr says I have

" ruptured " tendons in the bottom of my feet and my left hand palm, affecting

the ring finger. (Thankfully, I'm not expriencing any major joint problems)

I have been on temp disability since Dec waiting for the upped dosage of MX

(15 mg) to take effect. Sun. was the 6th upped dose and so far no effect at

all. Being off my feet has certainly made a big difference, but when I

spend any time on my feet the tendons in the bottom of my feet start

tightening up and hurting. Can't spend more than about 30-45 minutes on the

pc before the rt. wrist starts going numb and lf.hand begins to throb.

>

>I have been very lucky because I had 5 wonderful years as a normal person.

MX doesn't cause any side effects for me and does definitely clear my skin.

Folic Acid however does make me itch all over. I don't know what's going to

happen if the MX doesn't kick in. I guess my choices are find a job where

I don't have to use my hands or feet (unlikely) or go on long term

disability.

>

>If anyone has experienced: tendon problems especially the feet; temp. or

long term disability(emotional damage, pitiful income, insurance, etc.) or

has any suggestions on possible jobs I'd love to hear about it.

>

>Finally, yes the TV commercials drive me crazy!. My favorite phrase is

" the minor pain of arthritis. " What a crock! It makes all of us who

really suffer look like wimps or worse. However, I did get to vent this at

a focus group recently which I think was hosted by the arthritis foundation.

If any of you are ever asked to participate in any focus groups or other

market research studies do so. they pay you, sometimes feed you and you get

to have a say in what concerns us most. Sometimes the groups even turn into

mini group therapy sessions.

>

>Best wishes to all of you who seem to be really suffering right now.

Depression will make the pain worse (don't I know it) so try to keep your

focus on the good things in life instead of the pain. It really does help

to be grateful for the simple things, like the velvety softness of my

pansies and the sweetness of my cat's " nose kisses. " Keeping a journal is

good therapy too. If computers or writing hurts too much talk into a

recorder.

>

>

>Please visit our new web page at:

>http://www.wpunj.edu/icip/pa

>

[Guest guest]

Hi Margot, I am " CB " and started with onelist about a week ago. I just read

your note and am interested in what alternative methods you used. This is

the direction I want to head in at this point in time. Thanks for any help

you can give me. " CB "

[Guest guest]

Re: [ ] new member

>From: " C B " <caeb2000@...>

>

>Hi Margot, I am " CB " and started with onelist about a week ago. I just read

>your note and am interested in what alternative methods you used. This is

>the direction I want to head in at this point in time. Thanks for any help

>you can give me. " CB "

>

>

>

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

>DON'T HATE YOUR RATE!

>Get a NextCard Visa, in 30 seconds! Get rates as low as

>0.0% Intro or 9.9% Fixed APR and no hidden fees.

>Apply NOW!

>1/2066/1/_/494167/_/951939473/

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

>

>Please visit our new web page at:

>http://www.wpunj.edu/icip/pa

>

>Dear CB,I have tried a number of " alternative approaches " - it is quite hard

to pin-point exactly what helps me but the most radical improvement in my

condition was after the treatment given to me by a homeopath (Pulsatila ).

A friend of mine was totally crippled by psoriatic arthritis and was told

to exclude all milk products- she tried this and claims it has changed her

whole life- she can move again and function almost most normally- she says

she will never go back to eating milk products again.I alos take now Evening

Primrose Oil, Fish Oil and Vitamin E which seems to help my skin appearance.

I dont know much about alternative approaches, tend not to persevere with

taking these remedies, but am just too frightened of the conventional

medicines. Regards Margot

[Guest guest]

Hi nicksouth,

Cute addy. Welcome. I went to www.madasafish.com and was surprised it is a big

website. I hope you remember to check the

messages at www.onelist.com and check our archives for some answers

also.

At the bottom of each email is the website URL that our webmaster,

(currently on a REAL vacation) toils over.

As far as toes goes mine wouldn't bend and were swollen for months.

Three toes on the right foot and no trauma to set them off hurting.

After taking medications for months they went thru a " popping " phase

quite loud but the toes actually restarted to bend. Over a year later I

looked down and realized they hadn't bothered me and excitedly thrust my

foot in my husband's face (was on bed so not far) and bent the toes back

and forth freely without even touching them with my fingers. Wow! I

thought they were thru. Destined to deform but the medications helped

get them functioning again.

PA does not have a blood test that gives a positive or negative

diagnosis. The doctor does feel the joints and look at the psoriais. Watching

the blood labs is smart depending on what meds you

might try.

X-rays are worthless in MY opinion at this point. If you are speaking of

standard x-rays they fail to show soft tissue and tendon involvement

that a MRI would show. PA can attack the tendons and cause agony while

the bones are still in mint condition.

The PA can cause aches and pains in various joints at different times.

You can have a mild case of PA with a couple small joints hurting and

live quite well that way for years or wake up one day and cry for help

to get out of bed. Everyone is different and everyone responds

differently to the medications available to fight this disease.

Stress can make you feel worse. Fatigue can do you in at times and you

can get depressed from the medications, pain, life style changes etc...

I hope you find a good Rheumatologist to work with you in deciding what

is best for your body.

There are hundreds of products on the market that you can try to ease

the psoriasis and the PA. There are " natural alternatives " that some

people swear by and others swear at.

I like to think of this email list as a support line. I can read what

has helped others. I can get answers ie. found out I was really allergic

to a medication so went to doc for a switch of meds. Someone will send

in a link to an article about PA or a study done for a new drug for

arthritis.

Please tell us what you find out from your doctor and what works for

you. Be prepared to recognize that sometimes the aches and pains that

you have had for the past few years could have been symptoms of the PA

but you might not have recognized them. A lot of us look back and

remember times that there was no reason for a shoulder to hurt for a

couple weeks or not wanting to go for a walk because the feet hurt but

didn't know why.

I wish you good fortune in your fight of this arthritis. If anyone tries

to sell you a " cure " run in the opposite direction and save your money.

is the Owner and Founder of the list. She

started the list in late 1998 and there are now almost 300 members. Many

years of experience and experimenting are gathering here to help fight

PA.

The list is moderated with the help of myself and patty bacon. We don't

want to censor what the members have to say but we want the list to be

" kid safe " and free of " snake oil sales " .

Humor has threaded its way thru the list. I consider it a blessing and a

bonus.

Please write asking any questions you might have and remember to read

the archives when you have some free time.

Welcome, kick your shoes off and stay awhile. Y'all come back now

y'hear.

Pat B

[Guest guest]

Hi Nick,

You're already ahead of the game in that you've put

yourself in the care of what is hopefully a good DR.

Have you seen a specialist yet? The treatments for PA

are changing so rapidly now that only someone who

specializes can hope to tell you what the best course

of treatment for you might be. I'm currntly on 20mgs

of Methotrexate(MTX) a week and 75mgs Indocin twice a

day. The MTX attacks the disease progress while the

Indocin is for the pain and swelling. I've gone from

hardly being able to walk in the morning to being

almost pain free with my only complaint being stubborn

swelling in my left(dominant) hand. Might soon being

trying one of the new treatments, Enbrel or Remicade,

to attack this. Please let us know what your

Rheumatoligist recommends.

Keep Well

--- nicksouth@... wrote:

> Hi, I'd like to introduce myself. I'm from the UK,

> male, nearly 37,

> and just about to be diagnosed as having PA. The

> Doc didn't tell me

> much about it, just ran x-rays and blood tests, and

> sent me on my way

> to wait for my next appointment. That's why I'm

> here - to find out

> more about PA and what I can expect in the future,

> and to share

> experiences with others who know the score.

> I've suffered from relatively mild psoriasis for

> maybe ten years, and

> it's only over the last year that 5 of my toes have

> become swollen,

> angry and painful. I initially put this down to an

> old motorcycle

> crash which mashed mt right foot pretty bad, but it

> seems it is PA.

> It's gone from one toe to five toes in roughly six

> months, and it's

> getting worse, so what can I expect to have next?

> Any comments or

> advice from similar sufferers would be gratefully

> appreciated.

> Nick South

>

>

=====

C McCullough

thelockhorns@...

__________________________________________________

[Guest guest]

Pat B. -- that was one of the nicest welcoming letters I've seen and you

certainly have great insight regarding PA. I agree also that madasafish.com

sounds like a great web site. I think I'll see what's there, too! Regards,

Bunny

[Guest guest]

Hi, /sbc.

Really glad to se your post. I have been using minocycline for 7 months for

reactive arthritis. We haven't heard a lot from ReA folks in this time, and

it sounds like that may have been your diagnosis.

How long did the AP take to work for you? What antiobiotic(s) did you use?

Did you use IV's? How long had you had arthritis before you started the AP?

Thanks for any answers and specific encouragement you can pass my way.

Jean

> hello!

> I've been reading the posts and thoght I would introduce myself.

> my naame is susan and i see there are alreasy other 's here so

> I'll go by sbc. I have been on the AP since '88. I first saw Dr.

> Oliver, then dr. in AL., then Dr. Whitman in N.J., and now

> being treated in AL again. the arthritis began with a Salmonella

> infection which went untreated and caused an immune defense

> response. I also forget to capitalize letters! Oh well. When I was

> seen in Arlington Va. i was also found to have mycoplasma orale and

> M. salivarium along with the HLA-B27 gene. My complete history was

> published in the road Back Foundation's INTERRUPTED JOURNEYS vol.5.

> I am glad to report that i am feeling very well despite the toll the

> arthritis took. Ther is light at the end of the tunnel, so I

> encourage those of you who are new to the AP to hang in there and

> don't give up! When I was going trough the worst period ther was no

> egroup to talk to! I think this is great! By the way, my SED rate

> is now 1 compared to the98 when i began treatment. All for now,talk

> later. susan/sbc

>

>

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