Ankylosing Spondylitis

[Guest guest]

Hi Michele :

You should be able to find several folks here who have AS and have been on

the antibiotic protocol. Please hang in there -- there is hope. This time

last year I was in terrible shape and hurt so bad was unable to do most

mundane things - like getting up off the potty ! I have RA and it is in

remission hopefully, it will stay there for the rest of my days. I am taking

minocin and various vitamins/supplements. I became aquainted with a guy that

has AS and he told me that massive doses of vitamin C helped him a lot. Have

you tried that ? At least 3000 mg a day ( the type with bioflavenoids is

best ) if your bowels will tolerate it. If you take too much, it will give

you loose bowels , so that's your indication to lower the dose . I hope you

get better soon, and you will find lots of support from the members of this

group......Regards, Dean.

rheumatic ankylosing spondylitis

>

> Hello Everyone,

> I was diagnosed with AS in May of this year. I have read " The Arthritis

> Breakthrough " and am very interested in trying this therapy but I have had

a

> difficult time finding a physician familiar with it. I am currently on

> Voltaren which is helping but like everyone else, I want remission! I am

> also battling Fibromyalgia and am on a regiment of supplements which seem

to

> help but with the cold weather coming, I am worried about returning to

that

> awful state of constant pain. Like many others, I am in an HMO, which

means

> I have lousy insurance and have to jump through many hoops just to get

decent

> medical care. I am in the Cleveland area and would love to hear from

anyone!

> I am feeling very alone.

> Michele

>

> To unsubscribe, email: rheumatic-unsubscribeegroups

>

>

[Guest guest]

Hi ,

I too have AS, since April 96.

Do you know about the Starch Free diet? If not, you really must give it a

proper try. It is brilliant for AS. There are two books I would thoroughly

recommend, although neityher of them are specifically directed at AS patients

but rather at patients with related conditions (IBS, Ulcerative Colitis,

Crohn's).

Basically, the condition is caused by a bacteria, Klebsiella Pneumoniae,

which resides in your gut. It gets through the gut wall, and your body makes

antibodies to it. Unfortunately, your tissue type (which I guess is HLA-B27:

nearly all AS patients are) looks just like the bacteria. This is called

molecular mimicry. So, your antibodies end up attacking your own tissues. The

worst area is the lower back, because that is nearest to the gut.

Klebsiella feeds on starch, and can also make use of sugars (disaccharides;

sucrose in particular). This is why a starch-free diet minimises their

numbers. I have been doing this since February, with great success (I was

able to drop all anti-inflammatories within 2 months). However, the pain

never went completely. I think this is where the antibiotics come in. I've

been on them (minocin) for 6 weeks now, and there is again a marked

difference in my condition. I can eat some starch now without suffering

additionally.

Anyway, that's my story for now. I really should write this lot up on a web

page. Here's some URL's for you to look at in the meantime:

http://www.kickas.org/

http://www.kickas.org/as_dietary_primer.shtml

Books:

Carol Sinclair: the IBS Starch Free Diet

http://www.amazon.co.uk/exec/obidos/ASIN/0091815134/o/qid=968321150/sr=8-1/026

-0279228-0281259

(get this one if you can; you'll be glad you did! Not available in US Amazon

I think)

Elaine Gottschall: Breaking the Vicious Cycle (the SCD diet)

http://www.amazon.com/exec/obidos/ASIN/0969276818/qid=968321252/sr=1-1/104-766

6483-1779158

(another excellent book, diet very similar though not quite as effective in

my experience, as some starches sneak in)

Let me know how you get on. If you get these books (which both contain some

excellent recipes, btw, as well as lots of advice), I'd love to chat more

with you about how you get on, and some tips I've learned for myself whilst

following the diets.

I think it is important to do the diet first, before starting the AP

(antibiotic protocol), because that way you can reduce the swelling in the

joints without the need for NSAIDS to do it for you. This is much kinder to

your gut and should therefore speed up your healing process.

Regards,

> Hello Everyone,

> I was diagnosed with AS in May of this year. I have read " The Arthritis

> Breakthrough " and am very interested in trying this therapy but I have had a

> difficult time finding a physician familiar with it. I am currently on

> Voltaren which is helping but like everyone else, I want remission! I am

> also battling Fibromyalgia and am on a regiment of supplements which seem to

> help but with the cold weather coming, I am worried about returning to that

> awful state of constant pain. Like many others, I am in an HMO, which means

> I have lousy insurance and have to jump through many hoops just to get decent

> medical care. I am in the Cleveland area and would love to hear from anyone!

> I am feeling very alone.

> Michele

>

> To unsubscribe, email: rheumatic-unsubscribeegroups

>

>

>

>

[Guest guest]

Dear Leila,

I'm in Adelaide - my daughter has systemic scleroderma plus other problems.

We have these doctors listed in NSW who would offer your husband antibiotic

therapy and also the supportive measures which are needed:

Rod

Lorn Surgery,

Belmore Rd,

Lorn, NSW, 2320.

(049) 332 622

Dr. Cram

Coramba Medical Centre,

Gale St, Coramba, NSW, 2450

(066) 544241 fax (066) 544277

Helen Englert (rheumatologist),

26/12 Railway Parade,

Burwood NSW 2134.

(02) 9715-1311

Goodsell (osteopath),

Bondi Junction, NSW.

Hodgett

34 Church St,

Dubbo, NSW.

(068) 827011 fax (068) 827071

Warwick Hutton

252 North Rocks Rd,

North Rocks, NSW, 2151.

Bill Maitland

2 Hallam St,

town, NSW, 2290.

(049) 425400

Geoff Le Marne MBBS (GP),

21 Ethel St.,

Hornsby, 2077.

(02) 9477-5865

Reide (uses diet, many SD and lupus patients)

Sydney, NSW.

Emmanuel Varipatis, (IV and oral)

2 Brady St.,

Mosman,

Sydney, NSW 2089.

6129 960 4133

Most of the names on this list were given to me by Dr. Hanner in

Melbourne,

who co-founded the AIRD (Antibiotics in Rheumatic Diseases) group of doctors

in Australia. Please let me know how I can help you.

Chris.

>Hi everyone

>I am not suffering from this disease but my partner is and he is so

>frustrated after going to so many " specialists " as a teen that he

>just is resigned to being in pain. We are in Sydney Australia and

>have to work with the medical system here.

>I want to help and find out anyway I can encourage and work with him

>to stop some of his suffering. He wakes almost every night and has to

>sit up and groans from the pain. In the morning he can hardly move

>and at times his hip goes out to the point he has to really limp. He

>always has a pain in his groin......well a lot of the time.

>Is there any natural remedies or excercises, etc.

>I am open for ideas and really want to help him so please let me know

>any ideas.

>Thanks in advance for any help you can give.

>

>best, Leila

>

>

>To unsubscribe, email: rheumatic-unsubscribeegroups

>

>

>

[Guest guest]

Hi Martha,

The protocol is used in the same way for ankylosing spondylitis.

I remember Ethel telling me that one of Dr. Brown's patients was a man

with ankylosing spondylitis. He did so well on the antibiotics that he

left a sum of money to Dr. Brown's Arthritis Institute just before Dr.

Brown's death. Unfortunately this man's records were lost in the

breakup of the Institute after Dr. Brown died.

I would point this person to rheumatic.org and let him know that we are

here to help if he would like more information.

Chris.

On Sunday, November 30, 2003, at 05:59 AM, MRSROSE2000@... wrote:

> Someone has emailed me and asked how the protocol does on ankylosing

> spondylitis. Is anyone here familiar with this and how well it

> responds to AP??? I

> have RA and have no experience with this disease. He might need to

> talk to

> someone who has this and can give him more specifics on if AP helped

> them. Anyone

> willing to email him with some answers please let me know. I do not

> want

> to steer him wrong!! Martha

>

>

>

[Guest guest]

Does anyone in the group have AS? I've been having some new problems, as

well as noticing it's progressing faster than we'd hoped. Had a real " meltdown "

last week, and am not dealing well with this at all.

I'd really like to participate in the group more, but have realized I have

to come to terms with the AS and what's happening to my body.

I do read all the messages, and am thinking of you all, and keeping you in

my prayers. Very happy God answered our prayers and no one was seriously

affected by the hurricane/storms.

Dix

[Guest guest]

Sorry, but what's " AP " ?

[Guest guest]

AP is 'Antibiotic Protocol' when Minocin or other antx are taken over a long

period of time to get R arthritis into remission.

Ken.

Dirk Coetsee <dirk.coetsee@...> wrote:

Sorry, but what's " AP " ?

[Guest guest]

Thanks for the feedback, Cari. May I ask what your symptoms were if not

classic? My friend also has some " non-classic " symptoms.

[Guest guest]

Hi, Dirk:

In AS it is more important to limit starch consumption, especially while taking

antibiotics; the Klebsiella bacterium develops resistive strains quite rapidly.

If you are interested, I can send you my own protocol.

Please check out www.kickas.org and obtain a copy of Carol Sinclair's book: The

New IBS Low-Starch Diet with foreword by Professor Alan Ebringer (available

amazon--UK).

Good luck to You,

rheumatic Ankylosing Spondylitis

Hi there!

I'm curious, do you think that antibiotic therapy will be effective for

Ankylosing Spondylitis? Has anybody had success with it in that area?

Are there tests that can be done to determine if it will be useful or not?

Thanks!

Dirk