Just my humble opinion!

[Guest guest]

Greetings Y'all~

Yes, T'is poor old Cat, ( with the exception of my run-in with the

cyber-gods sticking me with Virus' and THEN sucking some drafts out of my

TBD( to be done) file...ergo the e-mail that " wasn't " !

Figured I would do some " fell swooping " and cover as many bases as I can

without putting everyone into a trance-like state!

As it turns out, the topic that I originally planned to " throw " out has to be

put on the old back burner...seems there is an even " hotter " topic at hand...It

is non other than St. of the tetricycline!

I have also read several postings from other people, including Kathleen our

" resident " RN and a member of the Board of the Foundation. She has been

extremely clear in her e-mails to you, and has been far more articulate ( not to

mention polite) on both her own personal concerns and that as a member of the

Board than I could have or will be. There are disclaimers everywhere on the

site, at the bottom of the SD e-mails dealing with various information..they are

pretty much self explanatory. They are posted for a reason..none of us has a

medical degree, therefore anything we might say in our postings are from our own

personal experience...as in " I noticed WHEN I " ...or in my humble opinion...when

you , use this mailing list to TELL people that they should TRY this ...and

that what they are on are TERRIBLE drugs...you cross the line..and its OUR

line..every member of the list who genuinely CARES about one another...those

lines!!!

So, lets get serious here , while I may not have felt well enough to post to

the group, I have, read the majority of the SD e-mails, yours among them....and

this is how I see it from where I sit..You have found something that works for

you, and

not one person in this group would EVER tell you that they are UNHAPPY that

you have found what works for you!

However, most of the members have already been the anti-biotics route, I

know I have old files from YEARS ago, when the doctors " assumed " that the

symptoms HAD to be some sort of " viral " attack so away we went with

Anti-biotics.. did NOT work and when that didn't work..NSAIDS...then prednisone

...VERY high doses during a flare 100mgs then tapered down then off. When I or

likley MOST people are in pain they will take whatever works...as long as it

makes the pain go away..I see that there doesn't seem to be ANYTHING that makes

you go away ....got any DIRECTIONS on that question?

There is not ONE person here that WANTS to be swallowing large amounts of meds

that no doubt may or may NOT do us harm in the future..but for now for the

PRESENT we'll take what WE and our Doctors " suggest " we take!!! Then along

comes JOHN, with HIS take on this disease AND each one of us. we aren't tough

enough..or brave enough?.... while we are at our worst, suggests we

" wean " ourselves away from the drugs that are working for us..even if minimally,

and take Tetricycline?? Now this is JUST MY humble opinion..........IF

people want your advise they will ASK you....Seems you just want to be RIGHT!

I am sure that every member has at some point in time read your e-mails

singing praises for anti-biotics...again, and again, and again, and in some

instances you have been WAY out of line in your glee to bring on board other

people who, for one reason or another, might be very fragile. They have arrived

firstly for INFORMATION...and Jenns abilities with the web has purty much

covered everything available. I wish I had the fabulous information we now have

at our fingertips.. 7 years ago.. fortunately...my luck came in the form of

Joyce and Aleeta, then Tom, and ah who could forget and Brent! We were all

a few lost souls, gradually finding out a bit more, then Dr. Cushs' paper on

SD...for some of us this was THE first written word they had on AOSD we'd gotten

in our hands...but NEVER did anyone attempt at anytime..to use tactics that were

anything BUT personal experiences...and NO one would have BADGERED people the

way you have!

The " newbies " who find themselves with a diagnosis of Stills Disease, and find

our support site, and are SO relieved to find that OTHERS have this disease .If

they are anything like some of the " newbies " they are " still " reeling over the

Diagnosis. Then finding our site, which has in it a great deal of information to

digest. The site covers just about everything there IS to know about AOSD as

well as " related " diseases like Fibro and more.

They read that many many of us are on or have been on everything from soup

(Anti-biotics) to nuts(, Prednisone, Plaquenil, Methotrexate, Gold shots,

Celebrex, Vioxx, and (if we are really lucky..Enbrel and Remicade) The NUTS are

serious medications, with some very fearful POSSIBLE side effects. We must

constantly be on guard for any or all of these possible side effects, but I know

that there's not a SINGLE person here, that wouldn't, in a NY minnit swallow,

COPIOUS amounts of anti-biotics IF they and their doctors thought they would

work for them..

In the majority of cases they don't seem to.......and Dr. Cush and a vast

number of RD's have sort of " been there done that " , and have had to pull out the

heavy guns!

So why would anyone turn a deaf ear to a doctor who has worked SO diligently to

HELP people with RA related diseases, and accept what you have to say as gospel?

Do you think that Dr. Cush is an evil genius making UP this stuff so that we

will

all take these VERY serious medications. For what pray tell....perhaps he

hold a vast number of stocks in Drug companies, and this is his way of

grabbin the gold....nope don't think so!

So, what OTHER reason could he have for NOT using YOUR therapy of choice?

How about it DOESN'T work for the greatest percentage of people with Stills,

and how your climbing on your antibiotic soap box at every turn, only

creates more confusion in an already bloody confusing Disease!

According to YOUR thought processes everyone else..the RD's the patients...all

wrong, and you are right..WRONG!

You have had your time in Centre Stage, we have heard thy words and will file

them away for " future " reference. It is my fervent hope that you aren't UNlucky

enough to encounter a massive Viral illness.. where will THAT leave you? Since

you are bombarding your body with anti biotics ......now..what drugs might they

use to combat a truly virulent strain of SUPER BUG that has found its way into

your body! We are very concerned with your stubborn refusal to wait until

someone asks about alternative therapy....I wonder how you might feel if

something you had suggested caused someone to be extremely ill..or worse...I

certainly wouldn't want something like that on my conscience...so either you

don't give a damn...or you aren't troubled by such an emotion!

This is pretty much an OPEN support group...and the KEY word here is SUPPORT,

and I don't think that your " information " is in the least bit " supportive " . Nor

is it coming from a place that is good and trying to inform..there's a huge

difference in putting thoughts and ideas " out there " and ramming them down the

throats of people who are no longer interested in what you have to say...nor do

I wish that the moment you see a new member sending us " herhis-tory " you race

off to tell them that you're just another a SD patient with " pearls of wisdom "

to impart! SO are YOU are the NEW POSTER Boy for " Stills beaten back with simple

anti-biotics " ?I so wish it were only as simple as that..it isn't!

We were so pleased to have heard from our newbie Patty, and what was your FIRST

response .... about YOUR therapy...there is usually a pleasant letter sent

welcoming she/him to our warm and welcoming support group....all of this can be

pretty intimidating for our Newbies, allow them to find their footing before

tossing that out ...PLEASE!! Or better yet wait until they ASK about anti-biotic

therapy!

So I have a wonderful idea..since you are " sold " on the therapy that works for

you... and obviously it IS working for you, BUT for every YOU there are

hundreds..get it HUNDREDS of SD patients that it hasn't worked for and IF you

have read most of the info Jenn has gleaned from various places you would see

that the percentages of Stills Disease treated successfully with anti-biotics

is so small as to be almost non-existent! Now I wish fervently that you too were

non-existant..to this group, this mailing list and anything else that is SD and

Foundation related!

If you are enjoying your pain free, remissive state, why not use your spare time

to be with your children, and your family.?.Every day the vast majority of us

have to struggle every day to get out of bed, put on shoes, clothes, and TRY to

keep our minds from slipping into " overdrive " ...we TRY and live a LIFE in a

world that doesn't " SEE " us as being ill.....some of my friends have had to

fight and struggle to be awarded a paltry Disability cheque that wouldn't even

cover the cost of your anti biotics !

This Foundation and site, is extremely important to just about everyone, oldies,

and newbies, so you will have to forgive OUR fervor in protecting the members,

and the Foundation from your very likely well-intentioned, but entirely OVER

DONE and OVER STATED therapy to which YOU subscribe. If you have noticed there

is a disclaimer EVERYWHERE throughout the site..this is to make sure that NO ONE

makes the mistake of " assuming " we members of the list and the Foundation have

any medical expertise save the things we have learned about OUR OWN PERSONAL

experience....and we have " seen " your garbage and do NOT wish any more of it...

So, since you seem to have the need for a platform, and according to you , you

have your OWN site...... may I suggest that you head on down the road and stick

with YOUR experiences on your own site... there you can scream your own, very

special virtues and your drugs of choice.....to the skies, and any OTHER

people who may share YOUR views! Why not start a mailing list through YOUR site

and thereby exchange YOUR daily version of Stills Disease ..... and Tetricycline

Therapy According to St. !

There has been many members that have asked you, nicely and maybe NOT so nicely

to please get the hell outta Stilligan's Island...Go and leave the getting

BETTER to US!

To the new members, I apologise if you have wandered into something that

resembles a war zone, and believe me when I say we rarely have " problems " with

zealots who have found " Nirvana " in a drug called Tetricycline. This is another

" disclaimer " of sorts. The information being touted by St. is not nor has

ever been a part of the SD Foundation or membership. While we have always

supported everyone's views here, this " issue " with is one that can only be

described as foolhardy information, disassembled by the inane rambling of what

is obviously a deceased/diseased mind....he figures he's " built a better

mousetrap " and we are to be his pigeons..or maybe guinea pigs...so please take

his rambling with a grain of salt, and file the info away somewhere " safe " like

the garberator.

None of the sane and rational people would be SO adamant at " making people

aware " !

Me thinks he doth protest TOO much. We are all here to help one another but this

fella is NOT helping anyone he is hindering us.....so remember the grain of

salt.....and name it !

Regards

Cat