Re: ankylosing spondylitis-Kathy

[Guest guest]

With AS, the bad thing is, if they go only by x-rays or somesuch, the

bone changes do not show for about 10 years. So you can go undiagnosed,

if they are depending on that alone.

Also for the HLA tests. They should NOT be used as designating wether

you have it or not. A lot of doctors (from what I read) don't even like

using that test, just as they don't like using the RA blood tests. Too

many people gett swept under rugs this way. Some doctors will only go by

" symptoms " . Not blood tests that vary with each person. Most doctors

don't want to continue digging after a test turns up negative. So if one

does turn up negative, and all SYMPTOMS are still pointing to a certain

direction, we should INSIST that " we " keep digging.

As for the CHLAMYDIA... it can also be caused by the CHLAMYDIA

PENUMONIA. I had all the STD's profile. And this is the one that showed

up.

I was told, that this type of Chlamydia does the same. Chlamydia is

CHLAMYDIA, no matter what word is in front or behind it. My OBGYN did

these tests for me. The RA doctor (at the time) would NOT do these

tests! Even though the Psorisis was so bad on me!

They say to " think back " to the WORST case of " flu " you ever had, and it

was probably the Chlamydia Pneumonia. Very contagious. And MOST people

in US have the antibodies for it! But... BUT! You have to have other

" triggers " to trigger the Chlamydia, that causes it to go into

arthritis, etc. That is why it doesn't bother some... and hits others.

You can get it over and over again.

I will follow this email with some research I did on it.

Susie

a wrote:

> Kathy,

> Yes you can have both. Multiple autoimmune diseases are not uncommon.

>

> Doctors usually base their diagnosis of ankylosing spondylitis on

> symptoms

> such as pain and stiffness, and X-rays showing inflammation of the

> sacroiliac joints at the back of the pelvis.

> Reactive Arthritis is the same as Reiter¹s. I¹ve posted information

> about

> Reiters¹s this week, so read up on it and maybe it will help. There

> is no

> one laboratory test for diagnosing Reiter's syndrome but HLA-B27

> genetic

> marker is found in 2/3 of patients, so your doctor will run tests for

> this

> marker. But this marker is also found in AS.

> The most common way of developing Reiter¹s is Chlamydia through sexual

>

> contact or salmonella food poisoning. I¹ve read case histories where

>

> outbreaks of food poisoning has left many people with lifelong

> arthritis

> complications.

> Hopefully your RD will be able to diagnose you soon. It¹s so

> frustrating

> not knowing. Since your bone scan already confirmed inflammatory

> spondylarthritis, and both Rieter¹s and AS is in the spondylarthritis

>

> family, it sounds like they are narrowing it down. Psoriatic

> Arthritis is

> also in the same family. Skin rash in PA and in Reiter¹s are very

> similar and it¹s difficult to tell them apart.

> I hope you get answers soon.

> a

>

>

>

> .

>

>

>

>

>

>

>

>

>

>

> AS tends to be inherited.

>

> Diagnostic tests

>

> If your symptoms or X-rays suggest ankylosing spondylitis, but the

> diagnosis

> is uncertain, your doctor may perform a blood test to check you for

> the

> HLA-B27 gene. About 90 percent of people diagnosed with ankylosing

> spondylitis do test positive for this gene.

>

>

> On 6/4/02 12:02 PM, " kringlemom@... " <kringlemom@...> wrote:

>

> > i forgot to say, my rheumi also mentioned ankylosing spondylitis.

> neither of

> > these sound good to me, can i have both? kathy in il

> >

> >

[Guest guest]

Susie,

It¹s just like all the rheumatic diseases. Until the damage is so bad that

it shows on x-rays, they have no definitive diagnostic tests. I once read

that if all types of arthritis was treated with antibiotics in the early

stages, many people would be cured. The standard medical literature says

that AB¹s aren¹t effective against AS and Reiters, yet many times they are

caused by germs that do respond to Abs. But they also say that the patients

are only on Abs for 3 months and anyone that is familiar with antibiotics

for rheumatic diseases knows it takes longer than 3 months.

A few days ago I posted an article that listed many of the pathogens thought

to be implicated in AS. The list is long. I¹ve also read that parasites

are implicated.

Sure wish the researchers would come up with answers for all these rheumatic

diseases.

How have you been feeling? I was horrified at the treatment you got from

your last doctor. Being on mtx myself, I will think of your story if I get

any lung symptoms. I hope your new doctor will continue to bring you

relief.

a

On 6/5/02 10:09 AM, " Elf " <sheadley@...> wrote:

> With AS, the bad thing is, if they go only by x-rays or somesuch, the

> bone changes do not show for about 10 years. So you can go undiagnosed,

> if they are depending on that alone.

> Also for the HLA tests. They should NOT be used as designating wether

> you have it or not. A lot of doctors (from what I read) don't even like

> using that test, just as they don't like using the RA blood tests. Too

> many people gett swept under rugs this way. Some doctors will only go by

> " symptoms " . Not blood tests that vary with each person. Most doctors

> don't want to continue digging after a test turns up negative. So if one

> does turn up negative, and all SYMPTOMS are still pointing to a certain

> direction, we should INSIST that " we " keep digging.

> As for the CHLAMYDIA... it can also be caused by the CHLAMYDIA

> PENUMONIA. I had all the STD's profile. And this is the one that showed

> up.

> I was told, that this type of Chlamydia does the same. Chlamydia is

> CHLAMYDIA, no matter what word is in front or behind it. My OBGYN did

> these tests for me. The RA doctor (at the time) would NOT do these

> tests! Even though the Psorisis was so bad on me!

> They say to " think back " to the WORST case of " flu " you ever had, and it

> was probably the Chlamydia Pneumonia. Very contagious. And MOST people

> in US have the antibodies for it! But... BUT! You have to have other

> " triggers " to trigger the Chlamydia, that causes it to go into

> arthritis, etc. That is why it doesn't bother some... and hits others.

> You can get it over and over again.

> I will follow this email with some research I did on it.

> Susie

[Guest guest]

a,

I get pain with my RA, at times severe, in what I consider my tailbone. In

reading about this AS thread, could that be my sacroiliac area, and if so is

that a problem that others with RA occasionally experience as well? Maybe I

need to mention it to my rheumy on my next visit. I get joint pain in so

many locations that I just assume it’s all RA. Anyway, the treatment is the

same, right?

Has anyone else with RA had the sort of pain I’m describing?

As always, thanks!

Hugs,

Carol

Re: [ ] ankylosing spondylitis-Kathy

Susie,

It¹s just like all the rheumatic diseases. Until the damage is so bad that

it shows on x-rays, they have no definitive diagnostic tests. I once read

that if all types of arthritis was treated with antibiotics in the early

stages, many people would be cured. The standard medical literature says

that AB¹s aren¹t effective against AS and Reiters, yet many times they are

caused by germs that do respond to Abs. But they also say that the patients

are only on Abs for 3 months and anyone that is familiar with antibiotics

for rheumatic diseases knows it takes longer than 3 months.

A few days ago I posted an article that listed many of the pathogens thought

to be implicated in AS. The list is long. I¹ve also read that parasites

are implicated.

Sure wish the researchers would come up with answers for all these rheumatic

diseases.

How have you been feeling? I was horrified at the treatment you got from

your last doctor. Being on mtx myself, I will think of your story if I get

any lung symptoms. I hope your new doctor will continue to bring you

relief.

a

On 6/5/02 10:09 AM, " Elf " <sheadley@...> wrote:

> With AS, the bad thing is, if they go only by x-rays or somesuch, the

> bone changes do not show for about 10 years. So you can go undiagnosed,

> if they are depending on that alone.

> Also for the HLA tests. They should NOT be used as designating wether

> you have it or not. A lot of doctors (from what I read) don't even like

> using that test, just as they don't like using the RA blood tests. Too

> many people gett swept under rugs this way. Some doctors will only go by

> " symptoms " . Not blood tests that vary with each person. Most doctors

> don't want to continue digging after a test turns up negative. So if one

> does turn up negative, and all SYMPTOMS are still pointing to a certain

> direction, we should INSIST that " we " keep digging.

> As for the CHLAMYDIA... it can also be caused by the CHLAMYDIA

> PENUMONIA. I had all the STD's profile. And this is the one that showed

> up.

> I was told, that this type of Chlamydia does the same. Chlamydia is

> CHLAMYDIA, no matter what word is in front or behind it. My OBGYN did

> these tests for me. The RA doctor (at the time) would NOT do these

> tests! Even though the Psorisis was so bad on me!

> They say to " think back " to the WORST case of " flu " you ever had, and it

> was probably the Chlamydia Pneumonia. Very contagious. And MOST people

> in US have the antibodies for it! But... BUT! You have to have other

> " triggers " to trigger the Chlamydia, that causes it to go into

> arthritis, etc. That is why it doesn't bother some... and hits others.

> You can get it over and over again.

> I will follow this email with some research I did on it.

> Susie

[Guest guest]

I have felt good since the Medrol dose pack. But within 3 days of

stopping it, I begin to have inflammation so bad, it was as before. I

went back, and they decided to keep me on the Lorcet and also start me

on the 10 of pred. a day. I finally gave in. I always said I would not

do the pred. at all. (I was a Vet Tech, and saw what pred's did to

animals, especially when we had to do surgery for something.)

But me and this new doctor talked at length about it. And if I want to

get a handle on this and get functional again (somewhat) I need to bite

the bullet. He is also thinking the Spondy group with me. (Though the

other doctor said the same last year.)

I just know that before I went to this new doctor, I was ready to die.

Literally. I really just wanted to die. I am not ashamed to say that. In

fact... I think those of us who live in daily, 24-7 pain like we do...

if we did NOT have these feelings at times, we would probably NOT be

NORMAL!

Just after I started the Medrol and wrote this list asking about it...I

had to go to Mobile. I stayed awhile, and also went up to Troy...a

friend's son had died. I then went back to Mobile and picked up my

almost 3 year old twin grand babies. Boy and girl... these were the tiny

1 1/2 lb babies I told you all about before! Miracle ones! They are back

here with me in GA now. I bring them back at the end of June. They are

great.

If it were not for me starting the Prednisone and pain meds., I would

not be functional enough to keep up with these 2. They are good babies

though. Very dependent on each other, and play so well together.

Funny thing about taking the MEDROL and now the PREDNISONE... I am

LOSING weight. I am eating/drinking normally, but losing slightly. I had

actually gained some weight before going to this new doctor (inactivity,

I believe)... and since I have been to him, and gotten out of some of

the pain and inflammation, I have lost back down to my normal weight

(105). So I think the reduced pain is making me more active again.

*I have noticed, for hours after I take the Pred. I have to urinate

quite a bit. Almost acts like a Fluid Pill for me for some reason. I

have never heard anyone saying that before. I wonder why it does me this

way.

Susie

a wrote:

> Susie,

> It¹s just like all the rheumatic diseases. Until the damage is so bad

> that

> it shows on x-rays, they have no definitive diagnostic tests. I once

> read

> that if all types of arthritis was treated with antibiotics in the

> early

> stages, many people would be cured. The standard medical literature

> says

> that AB¹s aren¹t effective against AS and Reiters, yet many times they

> are

> caused by germs that do respond to Abs. But they also say that the

> patients

> are only on Abs for 3 months and anyone that is familiar with

> antibiotics

> for rheumatic diseases knows it takes longer than 3 months.

> A few days ago I posted an article that listed many of the pathogens

> thought

> to be implicated in AS. The list is long. I¹ve also read that

> parasites

> are implicated.

> Sure wish the researchers would come up with answers for all these

> rheumatic

> diseases.

>

> How have you been feeling? I was horrified at the treatment you got

> from

> your last doctor. Being on mtx myself, I will think of your story if

> I get

> any lung symptoms. I hope your new doctor will continue to bring you

> relief.

> a

>

>

>

> On 6/5/02 10:09 AM, " Elf " <sheadley@...> wrote:

>

> > With AS, the bad thing is, if they go only by x-rays or somesuch,

> the

> > bone changes do not show for about 10 years. So you can go

> undiagnosed,

> > if they are depending on that alone.

> > Also for the HLA tests. They should NOT be used as designating

> wether

> > you have it or not. A lot of doctors (from what I read) don't even

> like

> > using that test, just as they don't like using the RA blood tests.

> Too

> > many people gett swept under rugs this way. Some doctors will only

> go by

> > " symptoms " . Not blood tests that vary with each person. Most

> doctors

> > don't want to continue digging after a test turns up negative. So if

> one

> > does turn up negative, and all SYMPTOMS are still pointing to a

> certain

> > direction, we should INSIST that " we " keep digging.

> > As for the CHLAMYDIA... it can also be caused by the CHLAMYDIA

> > PENUMONIA. I had all the STD's profile. And this is the one that

> showed

> > up.

> > I was told, that this type of Chlamydia does the same. Chlamydia is

> > CHLAMYDIA, no matter what word is in front or behind it. My OBGYN

> did

> > these tests for me. The RA doctor (at the time) would NOT do these

> > tests! Even though the Psorisis was so bad on me!

> > They say to " think back " to the WORST case of " flu " you ever had,

> and it

> > was probably the Chlamydia Pneumonia. Very contagious. And MOST

> people

> > in US have the antibodies for it! But... BUT! You have to have other

>

> > " triggers " to trigger the Chlamydia, that causes it to go into

> > arthritis, etc. That is why it doesn't bother some... and hits

> others.

> > You can get it over and over again.

> > I will follow this email with some research I did on it.

> > Susie

>

>

>

>

[Guest guest]

thanks paula, it just seems like you get used to one thing. then they tell

you another. no wonder people think we are nuts!!!i went to the dermatologist

today. he told me could be nerves, but told me to stay out of the sun. also

said i should get some prescription lotion that the pharmacy had to order.

kathy in il

[Guest guest]

wow, who would have even thought?? makes ya wonder . thanks for your help and

research. it really explained alot. kinda scary!! kathy in il