Re: Re: A visit to the doc

[Guest guest]

Besides me there is (who is moving to the desert and is not on line right now) Pierre and .

We all have AS and have benefited from antibiotics.

I will Email you info so you can bring it to your doctor

I was on tons of nsaids too and they dont work. Please at least try the minocin for a while and see if it helps. There is alot of acceptance to the use of minocin for its anti inflammatory properties so it is easier to get that way if you find your doctor opposed. It took me a year to get where I am now and last year i was mostly bed ridden. Now I am almost new

The pain with AS seems to helped also with codeine. What I have on hand is Norco and it works great and has the least amount of tylenol in it.

.Shaw@...

has a site in England for AS and is big on diet and antibiotics so please email him and tell him I sent you

KPSB2@... is moving at the moment and may not be on line for a week but Email her also

She was really bed ridden and is a big antibiotic advocate . She also has AS

pierre14@...

Pierre has some great info that he has compiled for AS

He is in Canada and would gladly support you also Please let him know that I sent you

We all have AS and will help you anyway we can. Please use us as support

I will email when I have time ifo on diet and any other info I have stored for you to peruse.

Ill be in touch

June

[Guest guest]

In a message dated 12/2/2000 1:04:14 PM Eastern Standard Time, I_shin_den_shin@... writes:

I cannot find anyone to help me. They say that it is uneccessary and that I

do not need it. Besides, I am still gaining a lot of info on AS from others,

regardless of my treatment. I wish that I could get some antibiotic

treatment but I am having no luck.

Where do you live?

Im sure someone on this list can give you a name of a doctor close to you....

June

I would definately go to another doctor.....

I did until I got the help I needed

[Guest guest]

on 12/2/00 8:50 AM, Murray at I_shin_den_shin@... wrote:

> It is a little hard to find info on this enthesis b/c I am not spelling it

> correctly.

--what you have is called enthesitis, or more commonly enthesopathy. It

is an inflammation of the entheses (singular enthesis), the insertion of

muscles, tendons, and ligaments to bones.

I don't know of any specific treatment for this inflammation. They like to

label it, but don't really have much to treat it. Cortisone injections to

the vicinity can help, apparently your doctor is suggesting the possibility

of surgery. I wonder what the surgery would accomplish. Sounds like

something to avoid. I would certainly ask some very pointed questions about

the possibility before seeing a surgeon. Ultrasound with cortisone cream

(from a physical therapist) can also help, but my experience is that is a

lot of time and effort for for a little relief.

I agree with June--what you really need to do is get the overall disease

under control.

Find someone to prescribe Minocin. Learn about the starch connection and AS.

The organism that is thought to cause AS can be controlled with a low-starch

diet and Minocin. If it turns out you have lupus instead of AS, the same

treatment will help it, too.

I guess I am beginning to wonder why you are hanging around on this list if

you are not pursuing antibiotic treatment. The sooner you address this, the

better it will respond. Time is slipping away, with you in pain.

Jean

[Guest guest]

I've also heard that the klebsiella bacteria which some say is causal of AS (among other pathogens) is susceptable to the herb Uva Ursi. You guys may want to add that to your regime for couple of months. I think its a great non toxic anti bacterial, possibly anti pathnogen herb.

Re: rheumatic Re: A visit to the doc Besides me there is (who is moving to the desert and is not on line right now) Pierre and . We all have AS and have benefited from antibiotics. I will Email you info so you can bring it to your doctor I was on tons of nsaids too and they dont work. Please at least try the minocin for a while and see if it helps. There is alot of acceptance to the use of minocin for its anti inflammatory properties so it is easier to get that way if you find your doctor opposed. It took me a year to get where I am now and last year i was mostly bed ridden. Now I am almost new The pain with AS seems to helped also with codeine. What I have on hand is Norco and it works great and has the least amount of tylenol in it. .Shaw@... has a site in England for AS and is big on diet and antibiotics so please email him and tell him I sent you KPSB2@... is moving at the moment and may not be on line for a week but Email her also She was really bed ridden and is a big antibiotic advocate . She also has AS pierre14@... Pierre has some great info that he has compiled for AS He is in Canada and would gladly support you also Please let him know that I sent you We all have AS and will help you anyway we can. Please use us as support I will email when I have time ifo on diet and any other info I have stored for you to peruse. Ill be in touch June To unsubscribe, email: rheumatic-unsubscribeegroups

[Guest guest]

> I've also heard that the klebsiella bacteria which some say is causal of AS

> (among other pathogens) is susceptable to the herb Uva Ursi.  You guys may

> want to add that to your regime for couple of months. I think its a great non

> toxic anti bacterial, possibly anti: pathnogen, anti parasitic, antifungal...

Hi Kathy, and welcome to the group. I've never heard of Uva Ursi. Do you

have any more information to share with us?

Jean

[Guest guest]

I have taken Uva Ursi for many years combined with cranberry capsules when my

kidneys and bladder were inflammed prior to AP. This is interesting as both of

them combined would help me if the inflammation was not so bad that I had to go

onto an antibiotic.

Probert wrote:

> > I've also heard that the klebsiella bacteria which some say is causal of AS

> > (among other pathogens) is susceptable to the herb Uva Ursi. You guys may

> > want to add that to your regime for couple of months. I think its a great

non

> > toxic anti bacterial, possibly anti: pathnogen, anti parasitic,

antifungal...

>

> Hi Kathy, and welcome to the group. I've never heard of Uva Ursi. Do you

> have any more information to share with us?

>

> Jean

>

>

> To unsubscribe, email: rheumatic-unsubscribeegroups

[Guest guest]

I cannot find anyone to help me. They say that it is uneccessary and that I

do not need it. Besides, I am still gaining a lot of info on AS from others,

regardless of my treatment. I wish that I could get some antibiotic

treatment but I am having no luck.

~

Re: rheumatic Re: A visit to the doc

> on 12/2/00 8:50 AM, Murray at I_shin_den_shin@... wrote:

>

> > It is a little hard to find info on this enthesis b/c I am not spelling

it

> > correctly.

>

> --what you have is called enthesitis, or more commonly enthesopathy.

It

> is an inflammation of the entheses (singular enthesis), the insertion of

> muscles, tendons, and ligaments to bones.

>

> I don't know of any specific treatment for this inflammation. They like to

> label it, but don't really have much to treat it. Cortisone injections to

> the vicinity can help, apparently your doctor is suggesting the

possibility

> of surgery. I wonder what the surgery would accomplish. Sounds like

> something to avoid. I would certainly ask some very pointed questions

about

> the possibility before seeing a surgeon. Ultrasound with cortisone cream

> (from a physical therapist) can also help, but my experience is that is a

> lot of time and effort for for a little relief.

>

> I agree with June--what you really need to do is get the overall disease

> under control.

>

> Find someone to prescribe Minocin. Learn about the starch connection and

AS.

> The organism that is thought to cause AS can be controlled with a

low-starch

> diet and Minocin. If it turns out you have lupus instead of AS, the same

> treatment will help it, too.

>

> I guess I am beginning to wonder why you are hanging around on this list

if

> you are not pursuing antibiotic treatment. The sooner you address this,

the

> better it will respond. Time is slipping away, with you in pain.

>

> Jean

>

>

>

> To unsubscribe, email: rheumatic-unsubscribeegroups

>

>

>

[Guest guest]

, " Enthesitis " : ) (that one's a real bugger, I tried spelling it

five different ways before I remembered it right)

Some links for you:

www.arthritis.co.za/ankspond.html

definition, from the above website:

" Enthesitis means inflammation at the site of tendon insertion into bone. "

http://www.spondylibrary.com/

http://www.rheuma21st.com/archives/cutting_edge_spondylitis.html

http://www.goldscout.com/enthesitis.html (interesting comments on how it may

present in children as frequent sprains)

http://www.jrheum.com/abstracts/editorials/990514.html

http://chaos.cpmc.columbia.edu/stunotes/upload/immuno30transcript.htm

http://www.apma.org/JAPMA/vol8901.htm#rear18

http://www.icondata.com/health/pedbase/files/SERONEGA.HTM

http://www.nih.gov/niams/news/hlab27re.htm

That ought to keep you busy reading for awhile ; ) Also, search the

rheumatic archives at for " Ebringer " to see the links sent

about a month ago.

I think I may possibly have AS as well as RA because I have had so much

spinal involvement and tendon insertion pain, but have yet to convince my

doctor of that since I am RA positive and fit 6 of 7 diagnostic criteria for

that also.

Tell the doctor you want to try tetracyclines, because the nsaids are not

helping you enough, for their potential anti-inflammatory properties. If he

will not go for that, Holler and I'll send you some references that might

help convince him. I don't see how any doctor could refuse a request like

that, as the anti-inflammatory properties of antibiotics are pretty well

established. You may not get the exact right one for your problem right

now, without the pathogen and susceptibility testing, but if you do improve

from the anti-inflammatory action, it will help convince him to try another

one in the future.

Gotta go for now, I have that dang flu virus again ( gotta go build a 10

foot wall around my property and put up electrified fence in case anyone

with a runny nose tries to get in -eg- joking, but only partly at this

point--I've had two well months out of the last 11 -groan-) Will talk to

you later or tomorrow. Hang in there! Liz G.

PS ask for some adequate pain control in the meantime! And don't forget

home care measures like icing the painful joints or alternating hot and cold

packs.

[Guest guest]

on 12/2/00 12:01 PM, Murray at I_shin_den_shin@... wrote:

> I cannot find anyone to help me. They say that it is uneccessary and that I

> do not need it. Besides, I am still gaining a lot of info on AS from others,

> regardless of my treatment. I wish that I could get some antibiotic

> treatment but I am having no luck.

Like June says, we have our sources. Let us know where you are. Someone may

have a doctor to share with you.

I did what a lot of folks on the list did--I asked a GP, not my

rheumatologist. Many rheumatologists think they already know it all, and if

this is not included in what they already think they know, they will not be

of much help.

Do you have acne? GP's and dermatologist regularly prescribe minocycline for

acne.

My GP prescribed it for me with the following reasoning: " I've prescribed

minocin for lots of teenagers with acne. We know it is safe for them. What

you have is much worse than what they have. It may be years before

researchers get around to testing it for every different kind of

inflammatory arthritis. The research for RA looks good, let's try it. "

The Arthritis Foundation lists minocycline as a DMARD, so do the Mayo Clinic

and Kaiser Permanente. Liz G and others regularly post lots of info about

research into the anti-inflammatory and anti-arthritis benefits of

minocycline, doxycycline, and other tetracyclines. You can find sitings of

research at both rheumatic.org and roadback.org.

Gather up a small representative sample of this information, including the

Arthritis Foundation info here

<http://www.arthritis.org/answers/DrugGuide/DMARDs.asp> and take it to a

sympathetic GP. Tell him you participate in a support group where several

people with AS or other spondyloarthropathies have been helped by

minocycline. Take the part of my e-mail describing my doctor's reasoning.

The other thing you might get your rheumatologist to prescribe is

sulphasalazine. Some think the reason it works for some is that it has

antibiotic and ant-inflammatory effects in the gut. It has more side effects

than mino, but may work. I personally consider minocycline to be a kinder

gentler alternative to ssz, but I think some on the list with the

spondyloarthropathies will tell you they have been helped by it.

Rheumatologists generally like to prescribe ssz, and have used it a lot for

AS.

Get in there and fight for yourself! It's your body, your life. The only

thing you have to lose is pain and increasing disability.

GO FOR IT! You are your own best advocate, and must take responsibility for

your care.

Jean

[Guest guest]

on 12/2/00 12:25 PM, Liz G. at pioneer@... wrote:

> I think I may possibly have AS as well as RA because I have had so much

> spinal involvement and tendon insertion pain, but have yet to convince my

> doctor of that since I am RA positive and fit 6 of 7 diagnostic criteria for

> that also.

Gosh, Liz, you sure are a good www researcher. Thanks for the links.

I had an uncle who had definite RA, but also had some definite features of

SpAs. His doctor told him some of these features were not related to RA.

One curious feature was ruptured extensor tendon attachments at the last

joints of many of his fingers, near the nails. His fingers were permanently

bent downward at the last joint.

If you read the rheumatology texts, you will see that some folks will

occasionally have two unrelated rheumatic diseases simultaneously. Psoriatic

arthritis occupies a peculiar position between RA and the SpAs. (You

probably already know this.)

How's your skin?

Thanks again for all the good info.

Jean

[Guest guest]

Hi Kathy, Jean...

wrote:

> Hi Kathy, and welcome to the group. I've never heard of Uva Ursi. Do you

> have any more information to share with us?

Nor have I. My Italian tells me that it means something like Bear Grape...?!

But I'd be interested in learning more.

Regards,

--

.Shaw@...

Institute of Biological Sciences, University of Wales,

Aberystwyth, Ceredigion, Wales

http://pcjagg.dbs.aber.ac.uk/index.html

[Guest guest]

What is Norco? I was taking tylenol with codeine for a while - it's the only

pain reliever that works for me without weird or dangerous side effects -

and if I am lucky enough to find a dr who will actually prescribe it - they

are so concerned with drug addiction, wish they would experience just a

little of the pain we go through....- but the tylenol scares me.

Lyn

===============

>

>Besides me there is (who is moving to the desert and is not on line

>right now) Pierre and .

>We all have AS and have benefited from antibiotics.

>I will Email you info so you can bring it to your doctor

>I was on tons of nsaids too and they dont work. Please at least try the

>minocin for a while and see if it helps. There is alot of acceptance to the

>use of minocin for its anti inflammatory properties so it is easier to get

>that way if you find your doctor opposed.

>It took me a year to get where I am now and last year i was mostly bed

>ridden. Now I am almost new

>The pain with AS seems to helped also with codeine. What I have on hand is

>Norco and it works great and has the least amount of tylenol in it.

>.Shaw@...

> has a site in England for AS and is big on diet and antibiotics so

>please email him and tell him I sent you

>

> KPSB2@...

> is moving at the moment and may not be on line for a week but Email

>her also

>She was really bed ridden and is a big antibiotic advocate . She also has

>AS

>

>pierre14@...

>

>Pierre has some great info that he has compiled for AS

>He is in Canada and would gladly support you also Please let him know that

>I

>sent you

>

>

>We all have AS and will help you anyway we can. Please use us as support

>I will email when I have time ifo on diet and any other info I have stored

>for you to peruse.

>

>Ill be in touch

>June

>

________________________________________________________________________________\

_____

Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com

[Guest guest]

on 12/2/00 12:01 PM, Murray at I_shin_den_shin@... wrote:

> I cannot find anyone to help me. They say that it is uneccessary and that I

> do not need it. Besides, I am still gaining a lot of info on AS from others,

> regardless of my treatment. I wish that I could get some antibiotic

> treatment but I am having no luck.

Did anyone give any doctor names for Toledo, Ohio?

We were encouraging her pretty strongly to pursue the AP, I hope we are

helping her find a doctor.

Thanks

Jean

[Guest guest]

>From: PSY333CHE@...

>paniangelica@...

>Subject: Re: rheumatic Re: A visit to the doc

>Date: Wed, 6 Dec 2000 08:49:13 EST

>

>Lynn

> " " What is Norco? I was taking tylenol with codeine for a while - it's the

>only

>pain reliever that works for me "

>I was on darvon, codeine,vicodin now this norco

>I guess its like vicodin. It has less tylenol then vicodin

>It works for me. My doctor is sensitive to my pain

>I guess Im Lucky

>June

________________________________________________________________________________\

_____

Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com