ankylosing spondylitis

[Guest guest]

Does anyone have experience with this condition (below) in relation to the

type O diet?

A1+NSa+b-MN

www.shaklee.net/tiger__medicine

tenzin@...

____________________________________________________________________

Message: 1

Date: Sat, 17 Mar 2001 15:14:08 -0000

From: " Voisine " <davidvoisine@...>

Subject: Ankylosing-Spondylitis-Support-Arthritis

This is an excellent support group for those who suffer from

Ankylosing Spondylitis or any other form of Arthritis.

Ankylosing-Spondylitis-Support-Arthritis

[Guest guest]

THANK YOU, THANK YOU, Georgina!! Michele

Ankylosing spondylitis

What is ankylosing spondylitis?

http://www.focusonarthritis.com/script/main/Art.asp?li=MNI & ArticleKey=274 & page=1Ankylosing spondylitis is a form of chronic inflammation of the spine and the sacroiliac joints. The sacroiliac joints are located in the low back where the sacrum (the bone directly above the tailbone) meets the iliac bones (bones on either side of the upper buttocks). Chronic inflammation in these areas causes pain and stiffness in and around the spine. Over time, chronic spinal inflammation (spondylitis) can lead to a complete cementing together (fusion) of the vertebrae, a process called ankylosis. Ankylosis causes total loss of mobility of the spine.

Ankylosing spondylitis is also a systemic rheumatic disease. Therefore, it can cause inflammation in other joints away from the spine, as well as other organs, such as the eyes, heart, lungs, and kidneys. Ankylosing spondylitis shares many features with several other arthritis conditions, such as psoriatic arthritis, reactive arthritis, and arthritis associated with Crohn's disease and ulcerative colitis. Each of these arthritic conditions can cause disease and inflammation in the spine, other joints, eyes, skin, mouth, and various organs. In view of their similarities and tendency to cause inflammation of the spine, these conditions are collectively referred to as "spondyloarthropathies." For more information, please see the Psoriatic Arthritis, Reactive Arthritis, Crohn's Disease and Ulcerative Colitis articles of MedicineNet.com.

Ankylosing spondylitis is 2-3 times more common in males than in females. In women, joints away from the spine are more frequently affected than in men. Ankylosing spondylitis affects all age groups, including children. The most common age of onset of symptoms is in the second and third decades of life. What causes ankylosing spondylitis?The tendency for developing ankylosing spondylitis is believed to be genetically inherited, and the majority (90%) of patients with ankylosing spondylitis are born with the HLA-B27 gene. Blood tests have been developed to detect the HLA-B27 gene marker, and have furthered our understanding of the relationship between HLA-B27 and ankylosing spondylitis. The HLA-B27 gene appears only to increase the tendency of developing ankylosing spondylitis, while some additional factor(s), perhaps environmental, are necessary for the disease to appear or become expressed. For example, while 7% of the United States population have the HLA-B27 gene, only 1% of the population actually have the disease ankylosing spondylitis. In Northern Scandinavia (Lapland), 1.8% of the population have ankylosing spondylitis while 24% of the general population have the HLA-B27 gene. Even among HLA-B27 positive individuals, the risk of developing ankylosing spondylitis appears to be further related to heredity. In HLA-B27 positive individuals who have relatives with the disease, their risk of developing ankylosing spondylitis is 12% (6 times greater than for those whose relatives do not have ankylosing spondylitis).

How inflammation occurs and persists in different organs in ankylosing spondylitis is a subject of active research. The initial inflammation may be a result of an activation of body's immune system by a bacterial infection. Once activated, the body's immune system becomes unable to turn itself off, even though the initial bacterial infection may have long subsided. Chronic tissue inflammation resulting from the continued activation of the body's own immune system in the absence of active infection is the hallmark of an autoimmune disease. What are the symptoms of ankylosing spondylitis?The symptoms of ankylosing spondylitis are related to inflammation of the spine, joints, and other organs. Inflammation of the spine causes pain and stiffness in the low back, upper buttock area, neck, and the remainder of the spine. The onset of pain and stiffness is usually gradual and progressively worsens over months. Occasionally, the onset is rapid and intense. The symptoms of pain and stiffness are often worse in the morning, or after prolonged periods of inactivity. The pain and stiffness are often eased by motion, heat and a warm shower in the morning. Because ankylosing spondylitis often affects patients in adolescence, the onset of low back pain is sometimes incorrectly attributed to athletic injuries in younger patients. Patients who have chronic, severe inflammation of the spine can develop a complete bony fusion of the spine (ankylosis). Once fused, the pain in the spine disappears, but the patient has a complete loss of spine mobility. These fused spines are particularly brittle and vulnerable to breakage (fracture) when involved in trauma, such as motor vehicle accidents. A sudden onset of pain and mobility in the spinal area of these patients can indicate bone fracture. The lower neck (cervical spine) is the most common area for such fractures.

Chronic spondylitis and ankylosis cause forward curvature of the upper torso (thoracic spine), limiting breathing capacity. Spondylitis can also affect areas where ribs attach to the upper spine, further limiting lung capacity. Ankylosing spondylitis can cause inflammation and scarring of the lungs, causing coughing and shortness of breath, especially with exercise and infections. Therefore, breathing difficulty can be a serious complication of ankylosing spondylitis. Patients with ankylosing spondylitis can also have arthritis in joints other than the spine. Patients may notice pain, stiffness, heat, swelling, warmth, and/or redness in joints such as the hips, knees, and ankles. Occasionally, the small joints of the toes can become inflamed, or "sausage" shaped. Inflammation can occur in the cartilage around the breast bone (costochondritis) as well as in the tendons where the muscles attach to the bone (tendinitis) and ligament attachments to bone. Some patients with this disease develop Achilles tendinitis, causing pain and stiffness in the back of the heel, especially when pushing off with the foot while walking up stairs. Other areas of the body affected by ankylosing spondylitis include the eyes, heart, and kidneys. Patients with ankylosing spondylitis can develop inflammation of the iris, called "iritis." Iritis is characterized by redness and pain in the eye, especially when looking at bright lights. Recurrent attacks of iritis can affect either eye. In addition to the iris, the ciliary body and choroid of the eye can become inflamed and this is referred to as uveitis. Iritis and uveitis can be serious complications of ankylosing spondylitis that can damage the eye and impair vision, and may require an eye specialist's (ophthalmologist) urgent care. Special treatments for serious eye inflammation are discussed in the treatment section below. [it should be noted that iritis and inflammation of the spine can occur in other forms of arthritis such as reactive arthritis (formerly Reiter syndrome), psoriatic arthritis, and the arthritis of inflammatory bowel disease.] A rare complication of ankylosing spondylitis involves scarring of the heart's electrical system, causing an abnormally slow heart rate. A heart pacemaker may be necessary in these patients to maintain adequate heart rate and output. The part of the aorta closest to the heart can become inflamed, resulting in leakage of the aortic valve. These patients can develop shortness of breath, dizziness, and heart failure. Advanced spondylitis can lead to deposits of protein material called amyloid into the kidneys and result in kidney failure. Progressive kidney disease can lead to chronic fatigue and nausea and can require removal of accumulated blood poisons by a filtering machine (dialysis). How is ankylosing spondylitis diagnosed?The diagnosis of ankylosing spondylitis is based on evaluating the patient's symptoms, a physical examination, x-ray findings, and blood tests. Symptoms include pain and morning stiffness of the spine and sacral areas with or without accompanying inflammation in other joints, tendons, and organs. Early symptoms of ankylosing spondylitis can be very deceptive, as stiffness and pain in the low back can be seen in many other conditions. It can be particularly subtle in women, who tend to (though not always) have more mild spine involvement. Years can pass before the diagnosis of ankylosing spondylitis is even considered.

The examination can demonstrate signs of inflammation and decreased range of motion of joints. This can be particularly apparent in the spine. Flexibility of the low back and/or neck can be decreased. There may be tenderness of the sacroiliac joints of the upper buttocks. The expansion of the chest with full breathing can be limited because of rigidity of the chest wall. Severely affected persons can have a stooped posture. Inflammation of eyes can be further evaluated with an ophthalmoscope. Further clues to the diagnosis are suggested by x-ray abnormalities of the spine and the presence of the blood test genetic marker, the HLA-B27 gene. Other blood tests may provide evidence of inflammation in the body. For example, a blood test called the sedimentation rate is a nonspecific marker for inflammation throughout the body, and is often elevated in conditions such as ankylosing spondylitis. Urinalysis is often done to look for accompanying abnormalities of the kidney as well as to exclude kidney conditions that may produce back pain that mimics ankylosing spondylitis. Patients are further evaluated for symptoms and signs of other related spondyloarthropathies, such as psoriasis, venereal disease or dysentery (Reiter's disease), and inflammatory bowel disease (ulcerative colitis or Crohn's disease). What are treatment options for ankylosing spondylitis?The treatment of ankylosing spondylitis involves the use of medications to reduce inflammation or suppress immunity, physical therapy, and exercise. Medications decrease inflammation in the spine, and other joints and organs. Physical therapy and exercise help improve posture, spine mobility and lung capacity. Aspirin and other nonsteroidal antiinflammatory drugs (NSAIDs) are commonly used to decrease pain and stiffness of the spine and other joints. Commonly used NSAIDs include indomethacin (Indocin), tolmetin (Tolectin), sulindac (Clinoril), naproxen (Naprosyn), and diclofenac (Voltaren). Their common side effects include stomach upset, nausea, abdominal pain, diarrhea, and even bleeding ulcers. These medicines are frequently taken with food in order to minimize side effects. In some patients with ankylosing spondylitis, inflammation of the spine and other joints may not respond to NSAIDs alone. In these patients, the addition of sulfasalazine (Azulfidine) may bring about long-term reduction of inflammation. Oral or injectable corticosteroids (cortisone) are potent anti-inflammatory agents and can effectively control spondylitis and other inflammations in the body. Unfortunately, corticosteroids can have serious side effects when used on a long-term basis. These side effects include cataracts, thinning of the skin and bones, easy bruising, infections, diabetes, and destruction of large joints, such as the hips.

For persistent ankylosing spondylitis which is unresponsive to antiinflammatory medications, agents that suppress body immunity are considered. Methotrexate (Rheumatrex) can be administered orally or by injection. Frequent blood tests are performed during methotrexate treatment because of its potential for toxicity to the liver, which can even lead to cirrhosis, and toxicity to bone marrow, which can lead to severe anemia. Physical therapy for ankylosing spondylitis includes instructions and exercises to maintain proper posture. This includes deep breathing for lung expansion, and stretching exercises to improve spine and joint mobility. Since ankylosis of the spine tends to cause forward curvature, patients are instructed to maintain erect posture as much as possible and to perform back extension exercises. Patients are also advised to sleep on a firm mattress and avoid the use of a pillow in order to prevent spine curvature. Ankylosing spondylitis can involve the areas where the ribs attach to the upper spine as well as the vertebral joints, thus limiting lung breathing capacity. Patients are instructed to maximally expand their chest frequently throughout each day to minimize this limitation. Exercise programs are customized for the individual patient. Swimming is preferred, as it avoids jarring impact of the spine. Ankylosing spondylitis need not limit a patient's involvement in athletics. Patients can participate in carefully chosen aerobic sports when their disease is inactive. Aerobic exercise is generally encouraged as it promotes full expansion of the breathing muscles and opens the airways of the lungs. Inflammation and diseases in other organs are treated separately. For example, inflammation of the iris of the eyes (iritis or uveitis) may require cortisone eye drops (pred forte) and high doses of cortisone by mouth. Additionally, atropine eye drops are often given to relax the muscles of the iris. Sometimes injections of cortisone into the affected eye are necessary when the inflammation is severe. Heart disease in patients with ankylosing spondylitis may require a pacemaker placement or medications for congestive heart failure. Cigarette smoking is strongly discouraged in patients with ankylosing spondylitis, as it can accelerate lung scarring and seriously aggravate breathing difficulties. Occasionally, patients with severe lung disease related to ankylosing spondylitis may require oxygen supplementation and medications to improve breathing. Patients may need to modify their activities of daily living and adjust features of the work-place. For example, workers can adjust chairs and desks for proper postures. Drivers can use wide rear-view mirrors and prism glasses to compensate for the limited motion in the spine. Finally, patients who have severe disease of the hip joints and spine may require orthopedic surgery.

What is in the future for patients with ankylosing spondylitis?Ankylosing spondylitis and each of the spondyloarthropathies are areas of active research. The relationship between infectious agents and the triggering of chronic inflammation is vigorously being pursued. Factors that perpetuate "auto-immunity" are being identified. The characteristics of the gene marker HLA-B27 are being further defined. In fact, there are now known to be seven different subtypes of HLA-B27. Results of ongoing research will lead to a better understanding and treatment of the group of diseases collectively known as spondyloarthropathies. Ankylosing Spondylitis At A Glance

Ankylosing spondylitis belongs to a group of arthritis conditions which tend to cause chronic inflammation of the spine (spondyloarthropathies). Ankylosing spondylitis affects males 2-3 times more commonly than females. Ankylosing spondylitis is a cause of back pain in adolescents and young adults. Tendency to develop ankylosing spondylitis is genetically inherited. The HLA-B27 gene can be detected in the blood of most patients with ankylosing spondylitis. Ankylosing spondylitis can also affect eyes, heart, lungs, and occasionally the kidneys. The optimal treatment of ankylosing spondylitis involves medications that reduce inflammation or suppress immunity, physical therapy and exercise.

Author: C. Shiel Jr., MD, FACP, FACR

For more information about Ankylosing Spondylitis, please visit the following sites:Arthritis Foundation (http://www.arthritis.org/) Virtual Hospital: Rheumatology-Septic Arthritis (http://vh.radiology.uiowa.edu/Providers/ClinRef/FPHandbook/Chapter06/05-6.html) Enable Center: Ankylosing Spondylitis (http://www.goodnet.com/~ee72478/enable/Facts1.htm)

[Guest guest]

Hi & Amy & ,

I'm glad you found the article on ankylosing spondylitis helpful. You're right. Compared to the other forms of arthritis there doesn't seem to be quite as much written, at least not online, about AS. This one had a lot of information, though. , I've added the address for the AS website to our group's bookmark/links folder at: /links/ If you have a URL for information about the mailing list/support group, we can add that, too.

I know what you mean about the amount of emails sometimes being overwhelming. There's a couple lists I really like. I've made new email folders for each one and now, with Outlook Message Rules, the mails go directly into them until I've got time to read and sort through. That works : )

Take care,

Georgina

Thanks for this article. The paragraph in there about spondyloarthropy was very informative. I have come to realize that people don't quite understand what it is ( I sure hadn't either). I have joined a spondy mom list to help me learn more. All the emails between the two lists are a bit overwhelming but I am so grateful for all the info and support I have found. Thanks again. Michele

[Guest guest]

Tina..sorry to hear..my heart goes out to you..i know you are scared right

now..and it may get scarier..we on this list are here for you..don't worry

about rambling..we all do it..my daughter who is 17..has had poly articular

since the age of 4 and a half..so i know what you are going thru..maybe if

you call the arthritis foundation they can let you know if there is some

type of support group with people who are in the same situation plus they

can give you pamphlets, etc.

You and your son are in my thoughts and my prayers!!!!!!

karen(tab17..poly)

From: " jramom2002 " <jramom2002@...>

Reply-

Subject: Ankylosing spondylitis

Date: Sat, 23 Mar 2002 06:07:25 -0000

Hi to all:

I got a call today from the doc at childrens hospital today. They

got the results back from the x-rays and labs that were done on the

18th at our first visit. They did x-rays of the shoulders, clavical

bone, lower back joints, and hips. All showed ok, except the hips.

His hips showed bad arthritic changes, erosive changes and thickened

fluid. His labs were all normal, although they are going to keep an

eye on his sed rate, 3 weeks ago it was 1, this time it was 14, still

within normal limits (1 - 15) but a dramatic increase. His HLA-B27

was normal, but with his hips looking as bad as they do they added

Ankylosing Spondilitis to his diagnosis of just poly. It seems as

this news just keeps getting worse here, and much scarier. I would

like more info on the conference if anyone has any, like when it is,

etc. Any info with this new diagnosis would be greatly appreciated

too. Thanks to all for being so kind and allowing me to ramble, it

does help to know i am not alone in this.

Thanks

Tina (7yr old with severe poly and A.S.)

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp.

[Guest guest]

Tina

i understand how you feel one thing i have learned i dont let my guard down

one day could change the next day its just up and down

jump on anything that you feel is needed

s sed rate the highest was 6 i believe when she was flareing bad it

was 3

thats when she could not walk the HLA B27 came back normal on her also

the first year it was really up and down we become adjusted to what could be

next

i dont make plans i just say if everything ok we will be there

Robbin

[Guest guest]

Hi Tina,

My 9 year old Buzz is also diagnosed as JRA and A.S. I know it does seem like the more you go on the worse it gets. That's how it has seemed to us. This site has helped me alot. Just hearing other stories and getting encouragement from other families going through this too. I too am interested in the conference. I e-mailed for info. from the arthritis foundation site. Hopefully it will be here soon. I just mailed last week. We went to a day camp two weekends ago that our state arthritis foundation held. They had programs for the children while the adults were in programs with physical therapist, doctors, and other experts. We really enjoyed and got some good info. One doctor gave a lecture on the spondyloarthropies. I was very pleased because it seems harder to find info. on those types of arthritis. Maybe your state foundation sponsors those type things too. You can get alot of info. from the foundations website and it will link you to your local foundation. That is how I found mine. Good luck.

Amy

Ankylosing spondylitis

Hi to all:I got a call today from the doc at childrens hospital today. They got the results back from the x-rays and labs that were done on the 18th at our first visit. They did x-rays of the shoulders, clavical bone, lower back joints, and hips. All showed ok, except the hips. His hips showed bad arthritic changes, erosive changes and thickened fluid. His labs were all normal, although they are going to keep an eye on his sed rate, 3 weeks ago it was 1, this time it was 14, still within normal limits (1 - 15) but a dramatic increase. His HLA-B27 was normal, but with his hips looking as bad as they do they added Ankylosing Spondilitis to his diagnosis of just poly. It seems as this news just keeps getting worse here, and much scarier. I would like more info on the conference if anyone has any, like when it is, etc. Any info with this new diagnosis would be greatly appreciated too. Thanks to all for being so kind and allowing me to ramble, it does help to know i am not alone in this.ThanksTina (7yr old with severe poly and A.S.)

[Guest guest]

I think I posted this before but wanted to be sure. Check out the website

www.spondylitis.org They have lots of info and also a spondymom list you can

join to learn more. It works like this list and gives us moms lots of

support. Hope this helps, Michele

Ankylosing spondylitis

Hi to all:

I got a call today from the doc at childrens hospital today. They

got the results back from the x-rays and labs that were done on the

18th at our first visit. They did x-rays of the shoulders, clavical

bone, lower back joints, and hips. All showed ok, except the hips.

His hips showed bad arthritic changes, erosive changes and thickened

fluid. His labs were all normal, although they are going to keep an

eye on his sed rate, 3 weeks ago it was 1, this time it was 14, still

within normal limits (1 - 15) but a dramatic increase. His HLA-B27

was normal, but with his hips looking as bad as they do they added

Ankylosing Spondilitis to his diagnosis of just poly. It seems as

this news just keeps getting worse here, and much scarier. I would

like more info on the conference if anyone has any, like when it is,

etc. Any info with this new diagnosis would be greatly appreciated

too. Thanks to all for being so kind and allowing me to ramble, it

does help to know i am not alone in this.

Thanks

Tina (7yr old with severe poly and A.S.)

[Guest guest]

In a message dated 5/29/2003 8:53:10 PM Pacific Daylight Time,

cayden@... writes:

> >>>>>>Wow ! You have been through alot, haven't you. Do you have

> alot of

> involvement in your hands?

Hi Roseanne,

So far not a lot of evolvement with my hands, if I use them all the time.

This time with the shoulders giving me a hard time I have found it harder to

type, but that may be from not typing as much during the school year as it is

mostly point and click while editing film. I also play guitar, and if I do not

practice a lot I find it harder to do and that is normal.

Roseanne says >>>>> tried to raise my hips to get up while still

laying on my stomach and it was excruciating. I could not lift my pelvis off

the mattress! That has happened to me several times now

says :::::::Sorry to hear of that. It is kind of like how my shoulders

are feeling, they hurt very bad for no reason, however I am quite sure as the

immune system goes dormant again and the toe heals the shoulders will stop

hurting. One of the most annoying problems now is leg cramps and a broken toe

so

when the legs cramp it is harder to get up and work out the cramp. A nurse

friend of mine showed me if you put a roll towel at the foot of the bed where

you can push upon it when you get a cramp it will help the cramp go away without

having to get out of the bed. most leg cramps happen when your feet are

extended and your toes are pointed towards the end of the bed instead of up.

nne says >>>>>>>>>>>>> I have always wondered about me having AS since

the back

pain is so frequent.   Perhaps I will try to get my regular doc to do a test.

Says ::::::May as well the HLAB-27 test can now be done by any lab as

a simple blood test. The doctors here a few years ago repeated the test to

make sure and yep the genetic marker was still there. Hang in there and keep

taking the antibiotics. I know they work.

Ann Pritchard

[Guest guest]

i have as also with inflamatory spondyloarthropy, fibromyalgia, diabetes,

glaucoma, costchondritis. kathy in il

[Guest guest]

Hi I have been treating or dealing with

Ankylosing Spondylitis,it sounds to me that you need

to talk to a Doctor about Enbrel. If they had this 40

years ago, my life would have much more Quality to it.

Good Luck Reggie

[Guest guest]

From reading the other posts regarding your multiple stress situations, I'd

like to add one more thought.

I have not completely been in remission from AS, FMS and and assortment of

other 'autos' in several years. When my dad died last November I was

terrified that I would be back in bed flat on my back in no time as there is

no one else to handle the estate and my mother who is in an Alzheimer's like

situation in an assisted living community. Though dad had multiple

properties, bank accounts credit cards etc and left no will he also left me

with a woman who is trying to do away with the estate and steal everything

she can get her hands on.

Through the prayers of many I have yet to go into a full fledged flare. I am

going to spare you the list of things that has gone wrong so far, but the

list is great and the things done to me by one person alone would normally

be enough to throw me in a huge flare. I know that prayer and God's grace

are the only things that are keeping me going. I have had times of

exacerbations of symptoms but so far no flare.

So please don't just assume that you will flare with your situation. Try to

do all of the things you have ever done to prevent a flare as well as think

of any new things you can come up with--like increased rest and nutrition

for example. Try to prioritize as much as possible and arrange deadlines so

things don't pile up on you at once. When you need help or extensions of

deadlines. One thing I have learned with all of this is that if you need

something more than you have to get through, ask. All anyone can do is to

tell you no--they can't kill you or maim you for asking.

My thoughts and prayers are with you and again, I hope you will keep us

posted as to what is going on so we will know how to pray for your

situations.

[Guest guest]

No, I have not heard of Klonapin before, hope you

discussed Enbrel with your Doctor. Reggie

[Guest guest]

Hi, MT:

AS is caused by the common bowel flora Klebsiella pneumoniae, but there could be

a mycobacterium involved, also.

Professor Alan Ebringer has published many papers on his and other studies

proving the role of molecular mimicry related to the antibodies we produce to

this specific pathogen.

There is some discussion as to whether starch-restrictive diets work

universally, but there is no doubt that AS is the result of many episodes of

KRA; Klebsiella Reactive Arthritis.

There is much information, including the technical papers published on the

www.kickas.org website.

The reason that I KNOW AS is caused by Klebsiella: I began using antibiotics

(obtained on my own) known to be strong Kp killers five years ago when I began

the No Starch Diet (NSD) in earnest. My AS stopped immediately (about 10 days),

and I continued to improve for over one year, dropping pockets of inflammation I

had become accustomed to (frog-in-pot syndrome).

Killing my Kp colonies also got rid of my GERD, asthma, and of course the myriad

sequelae of AS (iritis, kidney stones, costochondiritis, plantar fasciitis, knee

water, etc).

Again back to REASON I KNOW: I found myself in Mexico, buying every antibiotic

I could get my paws on, to check out for our members on kickas and whomever else

could listen. I took antibiotics just because they were 'antibiotics,' but some

DID NOT WORK. When LATER, doing the research I SHOULD have done first--every

antibiotic which has no activity against Kp failed to provide relief, so

symptoms began to return even with a rather strict diet. Perhaps this is a

single-blind study, but I'M convinced of Ebringer's work, although he does not

specifically promote antibiotic therapy, he believes that it is the anti-Kp

sulfa component of sulfasalazine that has the greatest DMARD effect upon AS and

the reason the ENTERIC-COATED stuff is an order of magnitude superior.

I published a booklet, you are welcome to if interested, but attached are

lecture notes from Ebringer's most recent US visit (graphics files omitted for

download speed).

Best Regards,

rheumatic Ankylosing Spondylitis

Hello ~

I am looking for testimonials and studies relating to AS and

antiobiotic therapy or AS and mycoplasmas. Can anyone contribute?

I would greatly appreciate it. Thank you!

MT

To unsubscribe, email: rheumatic-unsubscribeegroups

[Guest guest]

,

I'd be happy to talk to you about ankylosing spondylitis. You can e-mail me

privately at karenw@.... Have you and the rest of your family been

tested for the gene HLA-B27? 95% of people with AS have the gene HLA-B27.

However, you can have HLA-B27 and not have AS. My sis and I both have the

gene HLA-B27 and another gene that can lead to autoimmune diseases. We got

the gene HLA-B27 from our dad and the other gene from our mother. Our dad has

not been tested but my mom was tested for the gene, HLA-B27 and does not have

it. So, my sis and I got it from our dad or the mailman. My daughter,

Nikki, also does NOT have the gene HLA-B27. I was very glad to know that

because her symptoms from RA are similar to those of ankylosing spondylitis.

Yes, AS is more common in men and typically more severe in men. I feel pretty

sure my uncle (my dad's only sibling) has AS but he has never been tested for

it. I think he may have other autoimmune diseases and I gave him info and

suggested that he ask to be tested. I haven't talked to him to find out if he

has been tested for AS and/or any other autoimmune diseases. I think it's

possible that my dad might have a mild case of AS, but he's also never been

tested. However, he is 69 and still very healthy and active.

e-mail me any time.

take care,

W

[Guest guest]

There's that one guy... Higbee? Who has a website about using the

antibiotics for AS. It worked for him. He traced his AS to the Klebsiella

bacteria.

[Guest guest]

You should discuss this with your rh, who will offer

you NSAIDs+corticosteroids+infliximab.

The alternative is AP, but nobody is quite sure it

works for you. AP is less immunosupressive than

conventional therapy.

Gordon

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

> 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

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

i would really interested in hearing- a friend of mine has this and i  think she would do great on ldncyndi CCyndi Lenzclenz@...http://www.tdgr2productions.comhttp://www.goldenrescuesouthflorida.com"Is colainn gan cheann duine gan anam cara"The highest calling is to be a soul friend St Brigid On Sep 19, 2008, at 5:57 PM, erhejo wrote:Does anyone have ankylosing sopndylitis and use ldn? 

[Guest guest]

A good friend of mine has ankylosing spondylitis, which I

have no idea how to pronounce, and she has been on ldn for about a year and a

quarter. She absolutely is doing great! The difference in her entire demeanor

and appearance was amazing. She has always been under a great deal of stress,

as both of her children have severe epilepsy, and she recently lost her husband

suddenly. He passed away from a stroke. I don’t think she could have

coped as well as she has with all that goes on in her life…..she was

about at the end of her rope before she went on ldn, and now has been much

better. Perhaps I can get more details from her, but my suggestion is to get

ldn as quick as possible. My friend gets the ldn from Skip….Conni

[Guest guest]

Hi, have copied and pasted 2 posts on ldn and AS 1: Well I was a skeptic on lDN but I talked my rheumatologists intoletting me try this stuff. I was ready to go on the heavy duty immunesuppressors if LDN failed. I thought I felt better but did not seeany real changes for the first 4 months. Finally at 4 months Inoticed the stiffness of the arthritis was easing up and I felt muchbetter.At 6 months I gave up the nsaids and I am only on LDN now. I feellike a normal human in the morning. I am not perfect but it feels sogood to not take nsaids and my gut is healing.3 weeks ago I finally had my knees drained of fluid and shot up withsteroids. I have done this before and the fluid always returned in aweek or so. My knees usually look like softballs or grapefruit withall the fluid. This time I am still not seeing the fluid

return,knock on wood. If my knees stay calm I will finally think the LDN isreversing the AS. In the meantime the relief from the total bodystiffness and being able to turn my neck again is like a gift from heaven.Steve

2:

>> Anyone out there taking LDN for AS? Fran>I have had AS now for 16 -17 years. I have been on LDN for just over6 months. I did not see much benefit for 4 months. I am finally offthe nsaids. Still slowly improving but a slow path it is.My son is 19 and has a mild case so far. We started him on LDN amonth ago. He reports less morning stiffness.Steve

Hope this is a help,....

with all the best fromIngrid

[low dose naltrexone] ankylosing spondylitisDoes anyone have ankylosing sopndylitis and use ldn? ------------------------------------

[Guest guest]

I too am in Maine. I have hla b27 and the doctor meantioned I may have

Ankylosing spondylitis, but decided to give me the diagnosis of

psoriatic arthritis. He said either way the medication prescribed would

help for either one. My ruematologist is in ton. I have a bad

case of uveitis and was trying to make a med change decision and asked

the doctor if he had any cases with the same situation that I have. I

thought it would be nice to compare notes, but he wasn't able to

accomidate due to confidentiality.

Bonnie

[Guest guest]

My son was diagnosed at age 12 and he went into remission about 1-1/2 years ago,

and now is off all meds. Our ped rheumatologist said that sometimes once the

males get thru adolescence, they can go into remission. Of course, he won't

likely stay there, but it is so nice to see him enjoying these good years. Just

wanted to offer hope!

and Rob 19 JAS

Re: first visit to the pediactric Rheumotologist

> One more suggestion,ask the doctor if there is any chance you

> child

> will outgrow this.

>

> Kathie

>

> >

> > Hello! Any advise for specific

> > questions to ask the Rheumo Ped Dr.

> > for the first visit?

> > thanks!

> > Lori

> >

>

>

>

[Guest guest]

My son also has juvenile spondy (diagnosed at age 11), and he has been in

unmedicated remission for a year now. He had a check up with his rheumy about 2

months ago and he also said that sometimes boys outgrow their spondy once

they've matured. We are hoping that this is the case with and that he

stays in remission. So here's another voice offering hope.

(, 16, JAS)

> > >

> > > Hello! Any advise for specific

> > > questions to ask the Rheumo Ped Dr.

> > > for the first visit?

> > > thanks!

> > > Lori

> > >

> >

> >

> >

>

>

>

[Guest guest]

Here's another voice of hope. Although in Chris' case we were told he

would probably have to deal with this disease in some form or another

for the rest of his life, he is doing well overall for now. Yes he works

full time, went to college, plays some sports, drives his car (which is

his pride and joy lol!), and in general is your typical 21 year old guy!

While I would not say he is in remission, he is much, much better than

he was at 13. With the treatments available today and in the future the

prognosis for kids with this disease is really quite good compared to

what it was even a generation ago. Michele ( 21, spondy)

________________________________

From: [mailto: ] On

Behalf Of enriquus

Sent: Wednesday, March 04, 2009 1:22 AM

Subject: Re: ankylosing spondylitis

My son also has juvenile spondy (diagnosed at age 11), and he has been

in unmedicated remission for a year now. He had a check up with his

rheumy about 2 months ago and he also said that sometimes boys outgrow

their spondy once they've matured. We are hoping that this is the case

with and that he stays in remission. So here's another voice

offering hope.

(, 16, JAS)

> > >

> > > Hello! Any advise for specific

> > > questions to ask the Rheumo Ped Dr.

> > > for the first visit?

> > > thanks!

> > > Lori

> > >

> >

> >

> >

>

>

>

[Guest guest]

wow, great to read all the positive comments! Thanks for taking the time to

post. Kathie

> > > >

> > > > Hello! Any advise for specific

> > > > questions to ask the Rheumo Ped Dr.

> > > > for the first visit?

> > > > thanks!

> > > > Lori

> > > >

> > >

> > >

> > >

> >

> >

> >

[Guest guest]

Has anyone successfully used mino to treat ankylosing spondylitis? Tests are

showing this is what my 33 year old son has. He goes to the rheumatologist on

Friday and he has agreed I can go with him. I am going to take info on mino.

Any suggestions would be appreciated.

Sandy

MCTD, pulmonary fibrosis, etc.

used mino for nine years