Re: What about a cure?

[Guest guest]

I never hear any word about a cure. I guess everyone just depends that the

medical establisment will eventually come through with a cure. My gut tells me

our medical system is bull and based on pure profit, the truth is our illness is

caused by either a virus or a bacteria of sorts and until the focus is on

finding and eradicating we will all be talking here 30 years from now. What

about us all funding a search for a cure after all we are the ones that would

benifit. What would the world be like without Arthritis? What would you do

tomorrow if you were well again. I could be so much more a help to my family as

of now I'm an old man before my time.

Reiters 13 years now

God bless!

b.

[Guest guest]

You never hear about a cure, because there is no cure for any kind of

arthritis. There are treatments and medicines that may help in a remission or

our

symptoms. There are many diseases that do not have cures and many of them are

terminal ( in other words, you will eventually die from the incurable

diseases. We are lucky....in that our disease will not kill us. (Very, very

rarely,

anyway.) The medical professionals and researchers are not conspiring against

us. In fact, it is to their advantage to find a cure.

Many web sites will tell you that they CAN cure spondy disease. This is the

biggest clue that the web site is bogus (quackery) and should be avoided

before you spend a fortune on untested " cure alls " or further tests that your

doctor has not ordered. These web sites can usually be identified because they

ask you to buy their books, their wares (new fashioned snake oils) or ask you

to buy their advice. BUYER BEWARE.

Best regards, Connie

[Guest guest]

Connie, Thank You for that info. I have been looking into alternative

treatment, like herbs, roots,etc. but they all want boocoo

$$$$$$$$$$$$$$$$$$$$$$$$$$ !!!!!!!!!!!!!!!!!!!!!!! Asked my rhuemy about it &

she said " let me know

when you're in so much pain you can't function & I'll start you all over

again " Marty

[Guest guest]

, What I have is in the auto-immune family. How can you stop your own

body from attacking itself ? If I had the answer to

that!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! (sigh) Marty

[Guest guest]

I agree, and am getting ready to pay myself to ask for tests to find the source

of my inflammation. Does anyone have any insight on how to turn reiters off?

its causing permanent damage and major infections that my body ignores in favor

of attacking my tendons and bones.

Thank-you,

danc5@...

----- Original Message -----

From:

I never hear any word about a cure.

[Guest guest]

Todd, If you know of something that the rest of us don't. I beg of you to

please share? I'm also weary of the never ending cycle. The drug companies

that float in my veins keep me working for now. Is there some new research that

you are aware of? HECK YEH!!!! I'd Love a cure. If you know of any sites ,

research labs , Univ. tests/studies on this subject, please post. I'm sure I'm

not the only one out there that would LOVE to be cured. Marty

[Guest guest]

Please count me in if you know of something off the beaten path. Feel free to

write to me off list if there is something out there out of the insurance

companies, docs and pharamacies that we don't know about.

GA

countryms@...

MCGEEtown@... wrote :

Todd, If you know of something that the rest of us don't. I beg of you to

please share? I'm also weary of the never ending cycle. The drug companies that

float in my veins keep me working for now. Is there some new research that

you are aware of? If you know of any sites , research labs , Univ. tests/studies

on this subject, please post. I'm sure I'm not the only one out there that

would LOVE to be cured.

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

Discover Pasty.net - http://www.pasty.net

[Guest guest]

I believe there might be a cure, but if we rely on insurance, doctors and

pharmacies we will never see one, because it's not in there best interest.

They want it to be a cycle sick means doctor, doctor meands pharmacy ,

pharmacy means insurance, cycle is about 3 months if not less.

Sorry to be blunt but it's very frustrating to deal with most

doctors/pharmacies/insurance companies that could care less.

Todd Aitken

[Guest guest]

A few years ago whilst sitting in the waiting room hoping my son would be the

next to see the Consultant, I had the biggest downer ever. An elderly gentleman

in a wheelchair joined us. He obviously was well know to the others waiting. I

can't remember what he was asked but his reply was, 'They don't want to find a

cure. It would put them all out of work'. He didn't sound bitter, the opposite

infact, but his words stayed with me.

It was the point in my life when I realised that AS is for life. Thats OK, I

can live with that, better me than someone else. But I looked at my son, at 15

years old and could have screamed. I want him to live a normal life. To have a

chance to do what he wants to do. I want him to announce that he is going on

holiday with his mates without having to worry about insurance, infusions and if

he's up to the trip. Want him to get a good job without being judged on how he

moves. I want him to go into a club without being refused because he moves like

a drunk. I want him to go to Uni today not stay in bed because it's snowing and

he scared of falling. I want him to be 6 foot 3 like his older brother not 5ft

7in. because his spine is so twisted. I want him to go into a shop and buy what

ever clothing he likes withou saying, 'Mom, does my back look bad in this'. He

has a hump which makes him walk in a 'C' shape. etc. etc. etc.

So yes, count me in too.

Angie

[Guest guest]

Well maybe if you were sent billions of dollars to study the problem for the

next 20 years you could come up with a longer lasting aspirin or better yet a

drug that knocked out your immune system and left you vulnerable to everything

else you came in contact with. I have the same illness! I'm just saying with the

money being spent on research there is not much to show for it. Your body

atacking itself is a theory the truth is your body is attacking something in

that tissue in that area it is in, if that were not true why does the immune

system not attack your ears? Or your nose? The answere is there is something in

that tissue your immune system does not want there.

[Guest guest]

Angie: I feel youe pain so deeply! That is why I said " why not a cure? " If not

now when? You see them build more study centers and such but where are the

benifits of so much funding? It certainly hasn't helped me. I really believe we

are being misled. If they wanted to find a cure why don't they do PCR tests on

every Reiters patient that come in to a doctors office. If they did you would

find specific bacteria or parts of bacteria in that tissue and then look for

ways to eradicate it not just mask symptoms. Why not a cure now!!!

[Guest guest]

I've dealt with the 'Why no cure' thingy over and over. At 10 years of age my

son was admitted to hospital. They drew a blank with all their tests. Photo's

were circulated around various hospital until someone came up with the

diagnosis. Pityriasis Rubra Pilaris. It took 6 weeks. The Consultant handed

me a med book and said read. Half a page with a few photos. 'Now you know as

much as I do' he stated. I went on the internet and finally found the only

group dealing with PRP. They informed me that as so few people suffered from

it, 800 reported cases world wide, no research companies were interested as it

wasn't financially viable. A sufferer (the one who's photos I'd seen in the

book) had paid for two years research out of his own pocket. That half page was

the sum total of the results. My poor son certainly got the short end of the

stick in this life. It was due to this diagnosis that his Ank Spon went un dx'd

until he was 15.

Seven years ago my husband was diagnosed with Motor Neurone Disease. He died.

No cure because they don't know what causes that either. All the research had

turned up was one drug that 'could' prolong life for up to three months, and

umteen dead ends (sorry about the pun) with their 'we've found it' statements.

My family agreed to be tested for a research project from (Cambridge?)

University. Blood work and questionnairs. I'd have walked there if it would

have helped. Anything to try to give them the info they need to get a handle on

diseases that mar folks lives. I believe the research has ended, not really

sure, as we recieved a letter asking for permission for the findings to go on a

register. We haven't heard anything since.

Angry - yes, in pain (emotional and otherwise) - yes. Give up hope - never.

Hang in there.

Angie

[Guest guest]

thanks Dave needed a good laugh, my husband and I were saying the same thing

as I believe we have our own private space in the church parking lot since

we spend 3-5 days a week doing something at church......thinking about that

mansion that he's preparing for us! Kathy from WI

[Guest guest]

Over the years I have been diagnosed and have had my dandy little spondy family

members, there have been cures touted every so often.

Some will say they will cure everything but the common cold. There have also

been and some still exist, treatments that will lessen our symptoms and make

life a tad easier. But they have some very unfortunate side effects. Yep they

do give us relief from pain and the crippling these diseases cause. Because

that little side effect happens to be the one that kills us. We will not be

around for the cure party.

There are a million or more snake oil salesment out there ready to take your

buck and they will take us for every penny we have. Met more than my fair share

of them.

However, science has just found insects, birds, animals and an area of tropical

rain forest unknown to man until now. So maybe there is a cure out there. We

just need someone to find it.

I could go on into a whole sermon on the topic of redemptive suffering, but

shall not go there today. My SI joints are driving me nuts today and I am

trying to figure out which sin I commited so I can pray about it. As most of

you know I was not always a priest or altar boy/choir member and it is that

interim of roughly 40 years that I call my temptation in the wilderness.

Well we are now into the Lenten Season that preceedes Easter for us. I told

Hazel that I might just skip going to Church as my sacrifice for Lent. Both she

and God had some soothing words for me after my being struck by lightening.

Blessings

+Dave

[Guest guest]

+Dave, I would love a copy! I can't help but wonder..... is this

retribution for my many past sins????????????????? Guess I'm gonna be here until

HE

decides I'm worthy of going home. Would you please send that offline to me???

Thanks Marty

[Guest guest]

Tell you what isn't that a beautiful thought one day be able to discard this

body that has AS...

Haba daba duuuuuuuuuuuuu

Can't wait for Glory !!!!!

[Guest guest]

The late Pope, The Great has two articles written about pain and

suffering. I will dig them out and post them in the files section of this list

or ask who wants a copy and send them out. But FIRST I have to find them on

one of these hard drives here and with over 200 gB of storage it might take a

small amount of time.

I hear the latest cure all making the rounds is a juice made from Goji Berries.

Had a neighbour try to sell us on the cure.

For those rememdies that say they will cure every disease known to man plus a

few more from outer space remember.....the safest thing to do is keep your

wallet in your pocket or purse and run for the nearest exit.

+Dave

[Guest guest]

Kathy wrote:

thinking about that

mansion that he's preparing for us! Kathy from WI

I have dibs on the outhouse that is at the furthest from the Manor House.

+Dave

Not only has a private parking spot but also owns the church and gym

[Guest guest]

What about the treatment they do for leukemia? Where they kill off your entire

immune system including the bone marrow, and then introduce bone marrow from a

healthy person, and allow your body to grow an entirely healthy and different

immune system. Why will this not work for us?

By the way I do not think that god is punishing any of us, but we are confused

when we believe that we as a form are so important. We can love all now,

including ourselves, and eventually we will transcend this body back into the

bliss of real oneness. I believe this theory and am trying to make it real for

me.

Thank-you,

danc5@...

[Guest guest]

I hear the latest is the a colloidal mineral drink made out of shark cartilage

called Rapid Response. My brother (who also has AS) swears by it. I took it

for about 1 week and did not notice any difference and plus, I would gag every

time I drank it. There is a web page about it if anyone is interested. Just

let me know.

Dewi

[Guest guest]

Angie,

There are days when I feel sorry for myself and wish that all of this would

end. Then I hear about all of these other horrible diseases that come up. How

lucky I am all I have is AS. Then I look at my 7 year old daughter. I BEGGED

them to test her for HLA B27 (SHE IS NEGATIVE!!)..... I know that I can't ever

give up..... I have to fight this one way or another. I do admit though, I do

get tired sometimes.

God Bless You!!

- 33 year old single mother - AS 6 years, Simi Valley, California

[Guest guest]

I was in my back yard the other day looking at this cedar gazebo that I have to

take down. It is 11' by 11' wide and 13' tall. I have to take it down (appx

1800 lbs) in order to make room for a swimming pool that we are finally getting

after 4 years of shopping around for it and trying to decide if we can really

afford it.

Looking at this gazebo...I thought, dang...is this ever going to suck having

to get up there and take it apart to move it into the garage for the month or so

to build the pool. A few hours later, I was at church with my family. I can't

remember what the pastor said for the Wed evening sermon...because I tend to day

dream a lot in church. I would swear that I have ADD to some extent...and

always have. Suddenly, like a bag of bricks, the realization hit me! What the

hell was I complaining about. Just 11 months ago...I would have been on the

inside of the house looking out...and saying, " boy, I sure wish my body felt

good enough to go out and get up on that gazebo and take it down " .

What an ironic twist. Thanks to Enbrel...I am able to function almost

normally for now. I sure wish I could get it through my head to take FULL

advantage of every day given to me that comes pain free. Once this project is

done...I really want to get involved with Habitat for Humanity building homes.

Not so much for the true meaning behind it (helping others) but more for the

selfish reason of working with my hands and building stuff. That is what I

enjoy!

To those of you having a good day today...stop reading this friggin email and

get a life away from the computer and the disease. I give you permission. And

for those of you having a bad day...I pray for your good day to come!

In solidarity,

Rob in Houston, TX

[Guest guest]

while some supplements and magic potions may do nothing, a week really isnt long

enough for anything to affect your system. i recently began taking

methylsulfanylmethane (MSM) again. when i used it a few years ago there was a

distinct decrease in my foot inflammation. my right shoe fit much better. i

stopped taking it after a year as i can only find it in asia via mail order and

i just got lazy. but i have started on it again (with grape seed extract) and i

hope to get similar results again. nothing is guaranteed, but it worked once

before and it may again. having said that, perhaps its not only the MSM at work

but a combination of things. but again, one week is not long enough to see any

results.

james

Stolla <sillyhil@...> wrote: I hear the latest is the a

colloidal mineral drink made out of shark cartilage called Rapid Response. My

brother (who also has AS) swears by it. I took it for about 1 week and did not

notice any difference and plus, I would gag every time I drank it. There is a

web page about it if anyone is interested. Just let me know.

Dewi

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[Guest guest]

By the way...before anyone gets on me about the: " Get a Life " comment on my

last posting....

I meant it to be a funny statement...not deroggatory.

Rob

[Guest guest]

,

My dad came home with this stuff and asked us to try it. My brother called

the other day and made me laugh.....he said that he can actually turn his head

to pull the car out of the garage..... I have also taken MSM for years. To me

it is part of my vitamins. This Rapid Response tastes pretty foul and it has

the consistency of snot. But.....I did read that you can rub it directly onto

the skin of the inflamed area and it will help. I think I can try that for more

than a week. Thanks for your input. I really appreciate all the support.

- AS 6 years. Simi Valley, California - 33 years old.