Re: Leaving this Forum

[Guest guest]

, I believe we have confused Reiter's syndrome with other types of

arthritis. Lyme disease can cause a special form of arthritis which is caused

by the Borrelia burgdorferi. Rheumatic fever is a special form of arthritis

and is also caused by a bacteria, the streptococcus germ. These two diseases

are treated vigorously with antibiotics. There are over 100 forms of arthritis

and all of them are treated a little differently. Lyme disease and Rheumatic

fever are called infectious arthritis. Reiter's symdrome ReA is a little

different, although it can have some of the same symptoms and may be caused by

other types of bacteria, germs, etc. Sometimes it is very hard to know which

of the different types of arthritis one has. Symptoms, history, family history

and clinical and lab tests are done to try to find which arthritis one has.

Problems may arise from patients and some doctors try to put us all in a box

and treat all arthritis symptoms the same. This is why it is important to

have a good Rheumatologist.

, I think you probably would be better served in the Lyme

group....because this is what your doctor believes you have. Spondy is treated

a little

differently. Sorry if you felt we were being negative, but I think this is

what has happened and why you might believe we aren't " keeping up with cutting

edge " treatments...because Reiter's syndrome and other spondy diseases are

treated differently. For the Spondyloarthropathies, we keep up on the cutting

edge daily. Many in our group have a undifferentiated spondy arthritis Dx and

if this is what your doctor feels you " might " have, then you are in the right

group. I really believe that the confusion comes, not from differing views,

but from a different Dx and it's treatment forms. Best regards...and I hope

you find support and help for your Lyme disease. Connie (granny)

_Lyme Disease: Chronic Lyme Disease_

(http://www.lycos.com/info/lyme-disease--chronic-lyme-disease.html)

_Infectious Arthritis_

(http://www.arthritis.ca/types%20of%20arthritis/infectious/default.asp?s=1)

(http://healthlink.mcw.edu/article/1021053502.html)

[Guest guest]

i have to say i havent been reading the same messages on RISG that you have. in

the past three (four?) years or so that i've been here, the messages of support

i've seen posted here for some people who are in dire straits, extreme pain,

dont know where to turn, dont know what to do, need advice on how to deal with

difficult doctors, and just general messages of support and kindness far

outnumber any negative posts that you are referring to.

in the past week there have been several messages where some posters have said

dont listen to your doctor and try this therapy instead of that, and other

posters including myself, took exception to that advice. if this is what you

refer to as negativity, then thats just a difference of opinion being expressed,

and should be viewed as such. it doesnt mean the advice offered has been

discounted, its the manner in which it was presented. the members here, are in

general, also about getting well and feeling good. however, its hard to express

that continuously when you have a disease that has no cure, only treatment and

you continue to suffer from day to day. thats when the S in RISG is important.

frankly, i think the people who post here regularly (some of whom havent posted

lately as i can see) seem to be doing well in spite of their condition.

at any rate, the benefits of being on this list far outweigh the disadvantages

and i'm sure almost everyone whos been a member here will agree. i live in

china, so i cant just pick up the phone and call my local doctor if i have a

problem. this list helps me out quite a bit when i have a question to be

answered.

i for one havent lost hope, but i have resigned myself to that fact that i may

have this condition for the rest of my life. as my rheumatologist once told me:

" of all my patients, the ones who do best are the ones who just keep an upbeat

mood and a good outlook on life. " (paraphrased)

people who think negative thoughts constantly will probably not feel good. this

list goes a long way to helping out in that regard, in my opinion.

james

evelynsasser <evelynsasser@...> wrote: I

know that nobody will care, but I am leaving this forum not to

return. I have read the posts and think the negativity here is enough

to keep someone ill. There is a great deal of research going on in the

area ReA especially on the topic of subclinical infections serving as

triggers for the disease. My own doctor has had success with many

patients and she is using new approaches based on recent findings.

In any case, I am sorry that many of you have lost hope. This place

reminds me of Dante's Inferno. I am going back to the lyme boards

where people are totally supportive and full of hope about achieving

health and wellness.

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

Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+

countries) for 2¢/min or less.

[Guest guest]

I care and you input is always welcome to me. Nothing is ever cured without

looking into uncharted turf. Nothing is ever cured without a little push either.

Look at AIDS! AIDS was a death sentence but the Hollywood and Music community

raised such a stink that within 10 years they researchers isolated the virus and

came up with a cocktail of drugs that put most into remission. I have been told

that our disease is very much on the backburner as far as funds go. I wouldn't

take things personally some have lived with this disease so long it's hard for

them to imagine a life without it and healthy again. Don't leave!!!

[Guest guest]

, I've been on this list for 11 years and have never found it to be

negative. I'm doing very well so I don't post often anymore. I think I tended

to depend on this list more when I was having problems and lots of questions.

Now I'm doing things that I never thought I would do. I'm physically active

training large dogs and now 3 miniature horses. It seems when we are well we

forget about the list. Maybe those that are doing well should take the time to

post more often. Due to the nature of lists, people rely on them when they need

the most support. I went from very poor mobility to living a very active life.

I'm so active that I tend to put my reactive arthritis issues on the back

burner. I'm glad that you're treatment is working for you. It sounds like you

have a very supportive rheumatologist. For others, the magic bullet is harder

to find. No one discounts your success. These auto-immune diseases have a wide

array of symptoms and causes. There is no single answer for everyone. We are

all doing the best we can to live a full life in spite of our physical problems.

Kay

[Guest guest]

I am sorry to hear that you feel this way. I am probably late in getting

this

out to you, but I need to say this. I've been on this list since 1998 and

I've

seen people come and go. When people are in chronic pain, which most of us

are

(including me), there aren't many positives to look forward to and we don't

feel good. Also, many of us have more than just one problem going on besides

Reiters, including me (I have over 6 different diseases). I try not to be

negative,

but there are days that ALL of us NEED to vent and let it all out. I know

that

there are some on this list that go through the same thing as me...no

support

at home. That can be so detrimental to us. I'm glad that your doctor is

doing

you good...you are one of the few lucky ones. If you feel you need to leave,

then do so, but, please do not cut this list down because it has been a

savior

for many people. Good luck and take care....Dawn

[Guest guest]

Please, I have been here for along time and had Reiters Syndrome for 30 +

Years Now and can't imagine any one not to get more about the disorder then

from here ...

I am treated at Hopkins Hospital since 1985 for a New Mechanical Saint

Jude Heart Valve and redo in 98 for a small leak and everything else That

Comes With Reiters ... I've have been telling and teaching more doctors about

it then you can imagine ... There's Not a lot of People with it ... I have

only met one person around here years ago ...

I was there last month and went in for a usual 4 to 6 week check up and

went home then the doctors called me at home and told me to come back in as

soon

as possible and I was admitted... I took in 6 unites of blood and we could

not find where it went ... We locked for it in my stools and a camera down

my throat (they knock you out and you don't feel or remember anything ) and

other places and couldn't find it anywhere ...

Bottom Line is this site has more information about Reiters from the people

that deal with it every day ...

So I wouldn't just let this site go bye ...

I Wish You Luck in anything you decide to do ...

_essexhaus@..._ (mailto:essexhaus@...)

[Guest guest]

KAY, I Never Thought that I would still be this physically active at 50

years old ...

I take 14 perscriptions a day and Remicade every 8 weeks and cannot believe

how I get around ...

My ex wife says I move more now then she has seen me in years ...

I couldn't ask for a better Forum ...

Walter at _essexhaus@..._ (mailto:essexhaus@...)

Sorry , haven't been around much lately ...

[Guest guest]

In a message dated 8/7/2006 6:51:03 P.M. Eastern Daylight Time,

evelynsasser@... writes:

I know that nobody will care, but I am leaving this forum not to

return. I have read the posts and think the negativity here is enough

to keep someone ill.

You Can Learn A lot From Here ...

Don't Sign Us Off Yet ...

We Can Learn From You Also ...

Walter at _essexhaus@..._ (mailto:essexhaus@...)

[Guest guest]

Dear " Esseshaus " ,

Speaking of very useful information...please do tell me more about this

mechanical heart valve of yours. I recently had an abnormal EKG and will be

having further testing done to see what's up with my heart (I have R.S./ReA.) I

am dimly aware of an Aortic Valve problem sometimes associated with R.S./ReA but

I do not know much about it. I'd like to be armed with as much info as possible

before I return to the Cardiologist. Any info or referrals would be much

appreciated.

Personally, this site has been a Godsend to me... figuratively and literally

speaking. Considering our daily challenges I think folks are amazingly resilient

here, probably because we have a safe, informative and caring place to vent.

Thanks,

in CA

regarding the New Mechanical St. Jude Heart Valve.....from Essexhaus

[Guest guest]

I too have a leaky heart valve. Now I'm concerned. My appt today

is w/ a top NY Rheumie. I'll mention it.