hello

[Guest guest]

Connie, welcome to our group. You have certainly been through a lot. I have

only been diagnosed with RP since the end of August. My known symptoms

started one year ago. Feb. 1999. It started with ear pain that has never

gone away. It continued with nose involvement and there must be some throat

involvement because I lose my voice. As I have done so this past several

days. I have had chest pains and other body symptoms. I had a bad cough on

and off for several years before I ever got the ear pain last year. Nothing

else that I can remember during that time except for a case of vertigo once

for a couple of weeks. The cough would last for months at a time. Now since

the ear pain I don't have a cough anymore. Don't know if it was related or

if the vertigo was related to RP. I have, also, developed Tinnitus. Which

is with me daily. When I seem to have a flare or am under a lot of stress

the noise is worse. The meds that I take have kept the ear pain at bay, but

it is with me daily. At first the doctor's thought it was an ear infection

and I took several courses of antibiotics. They never did one thing for me.

It wasn't until I was on Prednisone at a high dosage that I got any relief.

I am currently at 21MG's a day, plus I take Methotrexate injections once a

week. I am still on pain medication, too. My doctor hopes to wean me done

considerably on the Pred. and to take me off the pain medication once I am on

the Methotrexate longer. Your email is interesting. I hope you will

continue to post. I hope you will find out what is causing your ear pain.

Please let us know what Dr. Al Franco tells you about the treatment of

RP. There are many people in this group who know more than I do about RP.

Don't know if I was any help to you or not. Hope you find some answers here.

Again, welcome. Love and God Bless, Ronnie (ps I am a woman, my given

name is Rheanell)

In a message dated 2/16/2000 3:52:48 PM Pacific Standard Time,

JHACHE@... writes:

<< I'm re-sending this message........as it hasn't appeared on my screen yet

and I sent it the first time over 4 hours ago. Please accept my apologies if

it arrives twice. Connie

hello

Hello,

Hello to everyone.......where do I start? Well, I am new to this group, but

not so new to connective tissue diseases. I first got sick in August of '96.

I had just had a major urinary tract infection and was treated with Seprta.

Within a week I started a whole long list of symptoms that would change at

least weekly for the next six months. Roughly in order of appearance,

although not all would dissappear before the next would appear: pins and

needles in my hands, feet felt like I was walking on cobble stones, my arms

and legs were weak, I had weight loss and loss of appetite, a cough that

started out as small, and quickly grew to be a major symptom......I coughed

every time I ate (talk about a diet aid), most everytime I talked on the

phone, smells would get me started....anything from coffee, oranges, cleaners

and detergents and gasoline....anyway, sometimes the cough would subside

after 10 minutes or so, and sometimes I would go into a major cough where my

airway felt like someone was pinching it closed. Also, I always felt like

someone was poking a stick in my throat, just before I would start a cough

attack. Also, every 6 weeks or so my ears would suddenly HURT! just the

outside part. I would sometimes mention this, but more often than not I

would forget because by the time I made it to my next appointment, the ear

pain was gone. My doctor was very thorough in the testing department. Lots

of blookwork, including lots of connective tissue type, an MRI of my head and

neck, EMG (I think that's what it's called) to test muscle problems, IVP for

the kidneys.......everything came out normal.

As time went on my doctor still felt like I had Rheumatoid

Arthritis.....even after referring me to two different rheumatologists. I

looked up RA on the internet and still didn't like what I learned. I did

learn one thing, though. I accidently stumbled upon a site at

www.rheumatic.org and I am eternally grateful that I did. It has been a

Godsend for me. Eventually, I was correctly diagnosed with dermatomyositis,

which is another connective tissue disease in the RA family. DM causes

muscle weakness in the arms and legs, a rash, and it can involve the heart

and lungs and throat because these areas are made of muscle tissue. And it's

rare...which doesn't do me much good :-) The best part is that my doctor

started me on a program instead of using prednisone and methotrexate but

using antibiotics. The theory being that these diseases are caused by a tiny

organism called a mycoplasma which gets into the cells. The body tries to

attack it the organism and ends up attacking the healthy part of the cell at

the same time. This is where many doctors will strongly disagree.......but

that's OK. More and more doctors are trying this theory and they are finding

that the antibiotics work! Since I had already read up on the whole protocol

I was ready to get started immediately.

It is now two years since I have been taking the antibiotics and I am 90%

back to normal. I am beginning to regain some of the strength in my arms and

legs, my hands and feet don't hurt any more, my energy level is great, the

depression is gone. I would be happy to maintain at this level, but I

suspect there are more improvements down the line. My cough is 90% improved,

too. I haven't had a major attack since July. There's only one

thing.......my ears still hurt........usually for 12-24 hours, every 6 weeks

or so...which is less often and less severe than 3 years ago. I finally

decided to go to an ear-nose-throat ENT doctor. He didn't know for sure but

guessed that I had anything between sore ears from using Q-tips to clean

them, or a disease called relapsing polychondritis. Hmmmm, back to the

internet for information. This brings me to you :-) I read the articles,

including Dr. Trentham's. Did anyone notice the one line reference to a

patient with RP improving on Minocycline because the Methotrexate became too

toxic for them?

I have already heard of Dr. Trentham.......he uses antibiotics to treat RA

and has written some papers about its use in the disease called scleraderma.

When I saw the reference to RP and antibiotics, I wondered if my ear pain is

indeed RP. Not that I am out looking for another disease!! The articles

mentioned that RP can also be in conjunction with other connective tissue

diseases...like Dermatomyositis. Maybe my cough is not dematomyositis

related, but RP related. Maybe it has improved because of the antibiotics.

Maybe there is hope that RP can be more often treated with the antibiotic

protocol instead of prednisone and methotrexate. I understand that to a

certain degree, once the body has been damaged, it cannot completely heal in

a good as new fashion.......but maybe it can be stopped from getting any

worse?

I'm just hoping to bounce this off of you guys. You seem like a very

caring, genuine group of people. Next week I go to Riverside, (Los Angeles)

California for my once a year appointment with one of the most experienced

doctors in the country who uses the antibiotics to treat rheumatic diseases.

His name is Dr. Al Franco. I will certainly ask him about RP.

If any of you wouldn't mind comparing notes regarding the ear

pain/involvement and also if you have a cough like mine, I would sure

appreciate it. Any other thoughts and ideas?

thank you for listening :-)

take care,

Connie Hache >>

[Guest guest]

I'm re-sending this message........as it hasn't appeared on my screen yet and I

sent it the first time over 4 hours ago. Please accept my apologies if it

arrives twice. Connie

hello

Hello,

Hello to everyone.......where do I start? Well, I am new to this group, but not

so new to connective tissue diseases. I first got sick in August of '96. I had

just had a major urinary tract infection and was treated with Seprta. Within a

week I started a whole long list of symptoms that would change at least weekly

for the next six months. Roughly in order of appearance, although not all would

dissappear before the next would appear: pins and needles in my hands, feet

felt like I was walking on cobble stones, my arms and legs were weak, I had

weight loss and loss of appetite, a cough that started out as small, and quickly

grew to be a major symptom......I coughed every time I ate (talk about a diet

aid), most everytime I talked on the phone, smells would get me

started....anything from coffee, oranges, cleaners and detergents and

gasoline....anyway, sometimes the cough would subside after 10 minutes or so,

and sometimes I would go into a major cough where my airway felt like someone

was pinching it closed. Also, I always felt like someone was poking a stick in

my throat, just before I would start a cough attack. Also, every 6 weeks or so

my ears would suddenly HURT! just the outside part. I would sometimes mention

this, but more often than not I would forget because by the time I made it to my

next appointment, the ear pain was gone. My doctor was very thorough in the

testing department. Lots of blookwork, including lots of connective tissue

type, an MRI of my head and neck, EMG (I think that's what it's called) to test

muscle problems, IVP for the kidneys.......everything came out normal.

As time went on my doctor still felt like I had Rheumatoid Arthritis.....even

after referring me to two different rheumatologists. I looked up RA on the

internet and still didn't like what I learned. I did learn one thing, though.

I accidently stumbled upon a site at www.rheumatic.org and I am eternally

grateful that I did. It has been a Godsend for me. Eventually, I was correctly

diagnosed with dermatomyositis, which is another connective tissue disease in

the RA family. DM causes muscle weakness in the arms and legs, a rash, and it

can involve the heart and lungs and throat because these areas are made of

muscle tissue. And it's rare...which doesn't do me much good :-) The best part

is that my doctor started me on a program instead of using prednisone and

methotrexate but using antibiotics. The theory being that these diseases are

caused by a tiny organism called a mycoplasma which gets into the cells. The

body tries to attack it the organism and ends up attacking the healthy part of

the cell at the same time. This is where many doctors will strongly

disagree.......but that's OK. More and more doctors are trying this theory and

they are finding that the antibiotics work! Since I had already read up on the

whole protocol I was ready to get started immediately.

It is now two years since I have been taking the antibiotics and I am 90% back

to normal. I am beginning to regain some of the strength in my arms and legs,

my hands and feet don't hurt any more, my energy level is great, the depression

is gone. I would be happy to maintain at this level, but I suspect there are

more improvements down the line. My cough is 90% improved, too. I haven't had

a major attack since July. There's only one thing.......my ears still

hurt........usually for 12-24 hours, every 6 weeks or so...which is less often

and less severe than 3 years ago. I finally decided to go to an ear-nose-throat

ENT doctor. He didn't know for sure but guessed that I had anything between

sore ears from using Q-tips to clean them, or a disease called relapsing

polychondritis. Hmmmm, back to the internet for information. This brings me

to you :-) I read the articles, including Dr. Trentham's. Did anyone notice

the one line reference to a patient with RP improving on Minocycline because the

Methotrexate became too toxic for them?

I have already heard of Dr. Trentham.......he uses antibiotics to treat RA and

has written some papers about its use in the disease called scleraderma. When I

saw the reference to RP and antibiotics, I wondered if my ear pain is indeed RP.

Not that I am out looking for another disease!! The articles mentioned that RP

can also be in conjunction with other connective tissue diseases...like

Dermatomyositis. Maybe my cough is not dematomyositis related, but RP related.

Maybe it has improved because of the antibiotics. Maybe there is hope that RP

can be more often treated with the antibiotic protocol instead of prednisone and

methotrexate. I understand that to a certain degree, once the body has been

damaged, it cannot completely heal in a good as new fashion.......but maybe it

can be stopped from getting any worse?

I'm just hoping to bounce this off of you guys. You seem like a very caring,

genuine group of people. Next week I go to Riverside, (Los Angeles) California

for my once a year appointment with one of the most experienced doctors in the

country who uses the antibiotics to treat rheumatic diseases. His name is Dr.

Al Franco. I will certainly ask him about RP.

If any of you wouldn't mind comparing notes regarding the ear pain/involvement

and also if you have a cough like mine, I would sure appreciate it. Any other

thoughts and ideas?

thank you for listening :-)

take care,

Connie Hache

[Guest guest]

Hi Connie and welcome. The caugh and ear pain are just two signs of Rp but

please don't jump the gun I May be RP but doesn't have to be. One of the

doctors I saw in December put me on the minocyn pellets but for fibro not the

Rp and he also put me on a gout medicine can't think how to spel it right

now. colchicine I think! went to another new rheumy in Jan and he took me off

the minnocyn so I really don't know if it is an answer for RP or not. We have

another member who does take it for fibro and has terrific results with it.

good luck to you and hope you continue to improve. I know you will learn lots

here everyone is so helpful and encouraging

Love and Gentle Hugs,

Angie

Yesterday will fade and tomorrow will take care of itself. Lord, help me

today

http://www.geocities.com/acenneno_1999

http://rpolychondritis.tripod.com/index.html

http://disabilities-us.com/shad/

You don't stop laughing because you grow old, you grow old

because you stopped laughing.

Just click on the link below, and sign up for an account at X.com. It

takes less than two minutes, and we'll put $20 cash into your account to

get you started.

So click on this link right now, and come get your $20!

https://www.x.com/new_account.asp?Referrer=angiecatw1aol

**********************************************************************

[Guest guest]

Hi Ronnie,

Thanks for your welcome :-) It does help to compare notes to try and figure

this all out. I will definitely talk to Dr. Franco next week. All of these

connective tissue diseases are connected. They have so many overlapping

symptoms! And it seems that the usual treatments involve prednisone,

methotrexate, plaquenil....and pain killers.

I hope you are getting better,

Connie

hello

>

>

> Hello,

>

> Hello to everyone.......where do I start? Well, I am new to this group,

but

> not so new to connective tissue diseases. I first got sick in August of

'96.

> I had just had a major urinary tract infection and was treated with

Seprta.

> Within a week I started a whole long list of symptoms that would change at

> least weekly for the next six months. Roughly in order of appearance,

> although not all would dissappear before the next would appear: pins and

> needles in my hands, feet felt like I was walking on cobble stones, my

arms

> and legs were weak, I had weight loss and loss of appetite, a cough that

> started out as small, and quickly grew to be a major symptom......I

coughed

> every time I ate (talk about a diet aid), most everytime I talked on the

> phone, smells would get me started....anything from coffee, oranges,

cleaners

> and detergents and gasoline....anyway, sometimes the cough would subside

> after 10 minutes or so, and sometimes I would go into a major cough where

my

> airway felt like someone was pinching it closed. Also, I always felt like

> someone was poking a stick in my throat, just before I would start a cough

> attack. Also, every 6 weeks or so my ears would suddenly HURT! just the

> outside part. I would sometimes mention this, but more often than not I

> would forget because by the time I made it to my next appointment, the ear

> pain was gone. My doctor was very thorough in the testing department.

Lots

> of blookwork, including lots of connective tissue type, an MRI of my head

and

> neck, EMG (I think that's what it's called) to test muscle problems, IVP

for

> the kidneys.......everything came out normal.

>

> As time went on my doctor still felt like I had Rheumatoid

> Arthritis.....even after referring me to two different rheumatologists. I

> looked up RA on the internet and still didn't like what I learned. I did

> learn one thing, though. I accidently stumbled upon a site at

> www.rheumatic.org and I am eternally grateful that I did. It has been a

> Godsend for me. Eventually, I was correctly diagnosed with

dermatomyositis,

> which is another connective tissue disease in the RA family. DM causes

> muscle weakness in the arms and legs, a rash, and it can involve the heart

> and lungs and throat because these areas are made of muscle tissue. And

it's

> rare...which doesn't do me much good :-) The best part is that my doctor

> started me on a program instead of using prednisone and methotrexate but

> using antibiotics. The theory being that these diseases are caused by a

tiny

> organism called a mycoplasma which gets into the cells. The body tries to

> attack it the organism and ends up attacking the healthy part of the cell

at

> the same time. This is where many doctors will strongly

disagree.......but

> that's OK. More and more doctors are trying this theory and they are

finding

> that the antibiotics work! Since I had already read up on the whole

protocol

> I was ready to get started immediately.

>

> It is now two years since I have been taking the antibiotics and I am 90%

> back to normal. I am beginning to regain some of the strength in my arms

and

> legs, my hands and feet don't hurt any more, my energy level is great, the

> depression is gone. I would be happy to maintain at this level, but I

> suspect there are more improvements down the line. My cough is 90%

improved,

> too. I haven't had a major attack since July. There's only one

> thing.......my ears still hurt........usually for 12-24 hours, every 6

weeks

> or so...which is less often and less severe than 3 years ago. I finally

> decided to go to an ear-nose-throat ENT doctor. He didn't know for sure

but

> guessed that I had anything between sore ears from using Q-tips to clean

> them, or a disease called relapsing polychondritis. Hmmmm, back to the

> internet for information. This brings me to you :-) I read the

articles,

> including Dr. Trentham's. Did anyone notice the one line reference to a

> patient with RP improving on Minocycline because the Methotrexate became

too

> toxic for them?

>

> I have already heard of Dr. Trentham.......he uses antibiotics to treat

RA

> and has written some papers about its use in the disease called

scleraderma.

> When I saw the reference to RP and antibiotics, I wondered if my ear pain

is

> indeed RP. Not that I am out looking for another disease!! The articles

> mentioned that RP can also be in conjunction with other connective tissue

> diseases...like Dermatomyositis. Maybe my cough is not dematomyositis

> related, but RP related. Maybe it has improved because of the

antibiotics.

> Maybe there is hope that RP can be more often treated with the antibiotic

> protocol instead of prednisone and methotrexate. I understand that to a

> certain degree, once the body has been damaged, it cannot completely heal

in

> a good as new fashion.......but maybe it can be stopped from getting any

> worse?

>

> I'm just hoping to bounce this off of you guys. You seem like a very

> caring, genuine group of people. Next week I go to Riverside, (Los

Angeles)

> California for my once a year appointment with one of the most experienced

> doctors in the country who uses the antibiotics to treat rheumatic

diseases.

> His name is Dr. Al Franco. I will certainly ask him about RP.

>

> If any of you wouldn't mind comparing notes regarding the ear

> pain/involvement and also if you have a cough like mine, I would sure

> appreciate it. Any other thoughts and ideas?

>

> thank you for listening :-)

>

> take care,

>

> Connie Hache >>

>

> ---------------------------

[Guest guest]

Connie:

Hi here. So glad your now with the group. Thanks for your

history background, it's so reassuring (but sad) that there are others

out there who experience what we have.

I am one of the fortunate ones who have RP and respond very well to the

Minocin pellets (an antiobiotic). My symptoms started out with swelling

of a finger when trying to get off of Ibuprofen and ballooned from

there. I had Raynaud's (numbness in hands and arms along with

weakness), livido reticulitis (sore like ulcers on my legs) extreme

redness of my ears and top of my nose, fibromyalgia, arthritis like

pains especially in lower back, throat with hoarseness or completely

losing my voice or feeling of a big lump in it and vasculitis, eyes feel

very dry and get red with flares. (Boy I'm gonna sound like I'm a

really good time on a date huh? LOL)

My doc orginially worked me up for Lupus by then went to RP. Only tests

that came back abnormal were elevated ANA 1:320, complement C3 slightly

elevated and Igm slightly high.

They do feel I have a mixed connective tissue disease also but can't

tell me what as usual.

I researched autoimmune and Dr. Trentham agreed to let me try the

Minocin and I'd swear by it. It has made alot of my symptoms liveable

and I was able to get off the Pred and function reasonably well (very

well considered to most). I agree that it has been a life saver for me

personally, but it is only reported to work in certain cases. I do feel

people who have vasculitis probably will respond better to it than those

who don't have it with RP also but that's just a gut feeling I have. I

am however grateful that I found that information and pushed the doctors

to let me try it.

It's great to have you in the group. The information and support here

will be invaluable. Please ask all the questions you can and we will

try to help. As I have said before, I feel this group is really the

only defense I have against this disease because so many docs have let

me down. There is some more information I will be adding for possible

treatment (yes Angie I'll post it) in the near future that is probably

very controversial but interesting).

Sorry everyone but I had to go back to Netscape for a few days because

I'm not now getting posts through Outlook. Blain's stupid names back

temporarily until I can figure out what the heck is going on with it.

Bear with me and just respond to the group address and I'll get it. If

anyone needs to personally e-mail me I can be reached at

cath2000@....

Again welcome Connie!!

Ronniegrl@... wrote:

> From: Ronniegrl@...

>

> Connie, welcome to our group. You have certainly been through a lot.

> I have

> only been diagnosed with RP since the end of August. My known

> symptoms

> started one year ago. Feb. 1999. It started with ear pain that has

> never

> gone away. It continued with nose involvement and there must be some

> throat

> involvement because I lose my voice. As I have done so this past

> several

> days. I have had chest pains and other body symptoms. I had a bad

> cough on

> and off for several years before I ever got the ear pain last year.

> Nothing

> else that I can remember during that time except for a case of vertigo

> once

> for a couple of weeks. The cough would last for months at a time.

> Now since

> the ear pain I don't have a cough anymore. Don't know if it was

> related or

> if the vertigo was related to RP. I have, also, developed Tinnitus.

> Which

> is with me daily. When I seem to have a flare or am under a lot of

> stress

> the noise is worse. The meds that I take have kept the ear pain at

> bay, but

> it is with me daily. At first the doctor's thought it was an ear

> infection

> and I took several courses of antibiotics. They never did one thing

> for me.

> It wasn't until I was on Prednisone at a high dosage that I got any

> relief.

> I am currently at 21MG's a day, plus I take Methotrexate injections

> once a

> week. I am still on pain medication, too. My doctor hopes to wean me

> done

> considerably on the Pred. and to take me off the pain medication once

> I am on

> the Methotrexate longer. Your email is interesting. I hope you will

> continue to post. I hope you will find out what is causing your ear

> pain.

> Please let us know what Dr. Al Franco tells you about the

> treatment of

> RP. There are many people in this group who know more than I do about

> RP.

> Don't know if I was any help to you or not. Hope you find some

> answers here.

> Again, welcome. Love and God Bless, Ronnie (ps I am a woman, my

> given

> name is Rheanell)

>

> In a message dated 2/16/2000 3:52:48 PM Pacific Standard Time,

> JHACHE@... writes:

>

> << I'm re-sending this message........as it hasn't appeared on my

> screen yet

> and I sent it the first time over 4 hours ago. Please accept my

> apologies if

> it arrives twice. Connie

>

> hello

>

>

> Hello,

>

> Hello to everyone.......where do I start? Well, I am new to this

> group, but

> not so new to connective tissue diseases. I first got sick in August

> of '96.

> I had just had a major urinary tract infection and was treated with

> Seprta.

> Within a week I started a whole long list of symptoms that would

> change at

> least weekly for the next six months. Roughly in order of appearance,

>

> although not all would dissappear before the next would appear: pins

> and

> needles in my hands, feet felt like I was walking on cobble stones, my

> arms

> and legs were weak, I had weight loss and loss of appetite, a cough

> that

> started out as small, and quickly grew to be a major symptom......I

> coughed

> every time I ate (talk about a diet aid), most everytime I talked on

> the

> phone, smells would get me started....anything from coffee, oranges,

> cleaners

> and detergents and gasoline....anyway, sometimes the cough would

> subside

> after 10 minutes or so, and sometimes I would go into a major cough

> where my

> airway felt like someone was pinching it closed. Also, I always felt

> like

> someone was poking a stick in my throat, just before I would start a

> cough

> attack. Also, every 6 weeks or so my ears would suddenly HURT! just

> the

> outside part. I would sometimes mention this, but more often than not

> I

> would forget because by the time I made it to my next appointment, the

> ear

> pain was gone. My doctor was very thorough in the testing

> department. Lots

> of blookwork, including lots of connective tissue type, an MRI of my

> head and

> neck, EMG (I think that's what it's called) to test muscle problems,

> IVP for

> the kidneys.......everything came out normal.

>

> As time went on my doctor still felt like I had Rheumatoid

> Arthritis.....even after referring me to two different

> rheumatologists. I

> looked up RA on the internet and still didn't like what I learned. I

> did

> learn one thing, though. I accidently stumbled upon a site at

> www.rheumatic.org and I am eternally grateful that I did. It has

> been a

> Godsend for me. Eventually, I was correctly diagnosed with

> dermatomyositis,

> which is another connective tissue disease in the RA family. DM

> causes

> muscle weakness in the arms and legs, a rash, and it can involve the

> heart

> and lungs and throat because these areas are made of muscle tissue.

> And it's

> rare...which doesn't do me much good :-) The best part is that my

> doctor

> started me on a program instead of using prednisone and methotrexate

> but

> using antibiotics. The theory being that these diseases are caused by

> a tiny

> organism called a mycoplasma which gets into the cells. The body

> tries to

> attack it the organism and ends up attacking the healthy part of the

> cell at

> the same time. This is where many doctors will strongly

> disagree.......but

> that's OK. More and more doctors are trying this theory and they are

> finding

> that the antibiotics work! Since I had already read up on the whole

> protocol

> I was ready to get started immediately.

>

> It is now two years since I have been taking the antibiotics and I am

> 90%

> back to normal. I am beginning to regain some of the strength in my

> arms and

> legs, my hands and feet don't hurt any more, my energy level is great,

> the

> depression is gone. I would be happy to maintain at this level, but I

>

> suspect there are more improvements down the line. My cough is 90%

> improved,

> too. I haven't had a major attack since July. There's only one

> thing.......my ears still hurt........usually for 12-24 hours, every 6

> weeks

> or so...which is less often and less severe than 3 years ago. I

> finally

> decided to go to an ear-nose-throat ENT doctor. He didn't know for

> sure but

> guessed that I had anything between sore ears from using Q-tips to

> clean

> them, or a disease called relapsing polychondritis. Hmmmm, back to

> the

> internet for information. This brings me to you :-) I read the

> articles,

> including Dr. Trentham's. Did anyone notice the one line reference to

> a

> patient with RP improving on Minocycline because the Methotrexate

> became too

> toxic for them?

>

> I have already heard of Dr. Trentham.......he uses antibiotics to

> treat RA

> and has written some papers about its use in the disease called

> scleraderma.

> When I saw the reference to RP and antibiotics, I wondered if my ear

> pain is

> indeed RP. Not that I am out looking for another disease!! The

> articles

> mentioned that RP can also be in conjunction with other connective

> tissue

> diseases...like Dermatomyositis. Maybe my cough is not dematomyositis

>

> related, but RP related. Maybe it has improved because of the

> antibiotics.

> Maybe there is hope that RP can be more often treated with the

> antibiotic

> protocol instead of prednisone and methotrexate. I understand that to

> a

> certain degree, once the body has been damaged, it cannot completely

> heal in

> a good as new fashion.......but maybe it can be stopped from getting

> any

> worse?

>

> I'm just hoping to bounce this off of you guys. You seem like a very

> caring, genuine group of people. Next week I go to Riverside, (Los

> Angeles)

> California for my once a year appointment with one of the most

> experienced

> doctors in the country who uses the antibiotics to treat rheumatic

> diseases.

> His name is Dr. Al Franco. I will certainly ask him about RP.

>

> If any of you wouldn't mind comparing notes regarding the ear

> pain/involvement and also if you have a cough like mine, I would sure

> appreciate it. Any other thoughts and ideas?

>

> thank you for listening :-)

>

> take care,

>

> Connie Hache >>

> -----------------------------------------------------------------------

> [

[Guest guest]

Welcome Mike--My name is Janet,my husband Pete has RP...What is your wife's

name?? This is a wonderful group..to learn and to share

[Guest guest]

In a message dated 02/17/2000 9:54:55 PM Central Standard Time,

logger@... writes:

<< My name is Mike. My wife developed RP last summer. >>

Hi Mike,

Welcome to our group, you will find a lot of folks here that can help answer

your questions and give you moral support. How is your wife doing now? What

is her name?

Lu

[Guest guest]

In a message dated 2/17/00 10:23:06 PM Central Standard Time,

JHACHE@... writes:

<< My ears still get very

painful every six weeks or so. >>

Connie, I have bad ear involvment also, if you ever want to talk my # is

I had tubes put in today and it was " Heaven On Earth " it was a year of hell

taken away in 20 minn! although it hurts a bit in my throat but will be

better tomorrow.

Take care and so nice to meet you!

Love,

P

[Guest guest]

In a message dated 02/17/2000 10:54:57 PM Eastern Standard Time,

logger@... writes:

<< My name is Mike. My wife developed RP last summer. As the disease is rare

we know little about it. Judging from the messages I've read the symptoms can

vary a great deal. We were very lucky in that our doctors figured out what it

was within a week. If they hadn't she'd have died as she was very close to

death with congestive heart and kidney failure. It's good to find a group

with whom to share.

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

[Guest guest]

Connie

I would mention it to my doctor when I saw him for sure. you never know. they

claim if you are predesposed to autoimmunity you can delvelop more than one

illness. Like we need that! I hope that is not the case in your situation.

Love and Gentle Hugs,

Angie

Yesterday will fade and tomorrow will take care of itself. Lord, help me

today

http://www.geocities.com/acenneno_1999

http://rpolychondritis.tripod.com/index.html

http://disabilities-us.com/shad/

You don't stop laughing because you grow old, you grow old

because you stopped laughing.

Just click on the link below, and sign up for an account at X.com. It

takes less than two minutes, and we'll put $20 cash into your account to

get you started.

So click on this link right now, and come get your $20!

https://www.x.com/new_account.asp?Referrer=angiecatw1aol

**********************************************************************

[Guest guest]

In a message dated 02/17/2000 11:24:18 PM Eastern Standard Time,

JHACHE@... writes:

<< re you a patient of Dr. Trentham? I am a patient of Dr. Franco in Los

Angeles. I know they know each other, or at least know of each other. There

is an up-coming conference for doctors who are using antibiotics for these

diseases. Dr. Franco is one of the speakers, and I think Dr. Trentham is,

too. I think that we can get audio tapes of it later. I have a set of the

tapes from last year's conference. In the back of my sometimes foggy mind, I

think that I can remember Dr. Trentham talking about RP.....but that's before

I had ever heard of this terrible disease.

Anyway, keep getting better and take care, >>

connie if you can find those tapes I would pay for a copy of them.

Love and Gentle Hugs,

Angie

Yesterday will fade and tomorrow will take care of itself. Lord, help me

today

http://www.geocities.com/acenneno_1999

http://rpolychondritis.tripod.com/index.html

http://disabilities-us.com/shad/

You don't stop laughing because you grow old, you grow old

because you stopped laughing.

Just click on the link below, and sign up for an account at X.com. It

takes less than two minutes, and we'll put $20 cash into your account to

get you started.

So click on this link right now, and come get your $20!

https://www.x.com/new_account.asp?Referrer=angiecatw1aol

**********************************************************************

[Guest guest]

Thank you for your kind words, Angie. Believe me, I'm not out looking for

another rare disease :-) I will, however, mention it to my doctor next

week. I have had such good results with the Minocin for my other *rare*

auto-immune disease (dermatomyositis). I sure hope that if I do have RP

that the Minocin has been helping that, as well. My cough has gotten a lot

better in the last two years, but it is still there. My ears still get very

painful every six weeks or so. My bones in my chest don't hurt anymore like

they did in the beginning. So....who knows?

This is a wonderful group,

hugs and prayers to all,

Connie

Re: Fw: hello

> From: AngieCATW1@...

>

> Hi Connie and welcome. The caugh and ear pain are just two signs of Rp but

> please don't jump the gun I May be RP but doesn't have to be. One of the

> doctors I saw in December put me on the minocyn pellets but for fibro not

the

> Rp and he also put me on a gout medicine can't think how to spel it right

> now. colchicine I think! went to another new rheumy in Jan and he took me

off

> the minnocyn so I really don't know if it is an answer for RP or not. We

have

> another member who does take it for fibro and has terrific results with

it.

> good luck to you and hope you continue to improve. I know you will learn

lots

> here everyone is so helpful and encouraging

>

> Love and Gentle Hugs,

> Angie

> Yesterday will fade and tomorrow will take care of itself. Lord, help me

> today

> http://www.geocities.com/acenneno_1999

> http://rpolychondritis.tripod.com/index.html

> http://disabilities-us.com/shad/

> You don't stop laughing because you grow old, you grow old

> because you stopped laughing.

>

> Just click on the link below, and sign up for an account at X.com. It

> takes less than two minutes, and we'll put $20 cash into your account to

> get you started.

> So click on this link right now, and come get your $20!

> https://www.x.com/new_account.asp?Referrer=angiecatw1aol

>

> **********************************************************************

>

> ---------------------------

[Guest guest]

Hi ,

It is nice to *meet* you :-) It is great to hear that you are doing well on

the Minocin. Someday I think that doctors will use it as a first line treatment

from the very beginning for most, if not all, of these diseases. More and more

are trying it, probably because people are demanding it. Word spreads quickly

and that's good. I've known several people who have downloaded the protocol

from the website at www.rheumatic.org and given it to their doctors. Some

doctors become angry....but the good ones are willing to listen and learn.

I forgot to mention that I have Raynaud's, too. My hands and feet used to be

cold to the bone, but now they're just cold :-) It's an improvement.

Are you a patient of Dr. Trentham? I am a patient of Dr. Franco in Los Angeles.

I know they know each other, or at least know of each other. There is an

up-coming conference for doctors who are using antibiotics for these diseases.

Dr. Franco is one of the speakers, and I think Dr. Trentham is, too. I think

that we can get audio tapes of it later. I have a set of the tapes from last

year's conference. In the back of my sometimes foggy mind, I think that I can

remember Dr. Trentham talking about RP.....but that's before I had ever heard of

this terrible disease.

Anyway, keep getting better and take care,

Connie

Re: Fw: hello

Connie:

Hi here. So glad your now with the group. Thanks for your history

background, it's so reassuring (but sad) that there are others out there who

experience what we have.

I am one of the fortunate ones who have RP and respond very well to the

Minocin pellets (an antiobiotic). My symptoms started out with swelling of a

finger when trying to get off of Ibuprofen and ballooned from there. I had

Raynaud's (numbness in hands and arms along with weakness), livido reticulitis

(sore like ulcers on my legs) extreme redness of my ears and top of my nose,

fibromyalgia, arthritis like pains especially in lower back, throat with

hoarseness or completely losing my voice or feeling of a big lump in it and

vasculitis, eyes feel very dry and get red with flares. (Boy I'm gonna sound

like I'm a really good time on a date huh? LOL)

My doc orginially worked me up for Lupus by then went to RP. Only tests that

came back abnormal were elevated ANA 1:320, complement C3 slightly elevated and

Igm slightly high.

They do feel I have a mixed connective tissue disease also but can't tell me

what as usual.

I researched autoimmune and Dr. Trentham agreed to let me try the Minocin and

I'd swear by it. It has made alot of my symptoms liveable and I was able to get

off the Pred and function reasonably well (very well considered to most). I

agree that it has been a life saver for me personally, but it is only reported

to work in certain cases. I do feel people who have vasculitis probably will

respond better to it than those who don't have it with RP also but that's just a

gut feeling I have. I am however grateful that I found that information and

pushed the doctors to let me try it.

It's great to have you in the group. The information and support here will be

invaluable. Please ask all the questions you can and we will try to help. As I

have said before, I feel this group is really the only defense I have against

this disease because so many docs have let me down. There is some more

information I will be adding for possible treatment (yes Angie I'll post it) in

the near future that is probably very controversial but interesting).

Sorry everyone but I had to go back to Netscape for a few days because I'm not

now getting posts through Outlook. Blain's stupid names back temporarily until

I can figure out what the heck is going on with it. Bear with me and just

respond to the group address and I'll get it. If anyone needs to personally

e-mail me I can be reached at cath2000@....

Again welcome Connie!!

[Guest guest]

Welcome Mike and Gold bless you and your wife ! You will find that this is

a wonderful group.

B. CT

A

Burdick

Circulation/Interlibrary Loan Phone:

Yale Divinity Library Fax:

409 Prospect Street email: susan.burdick@...

New Haven, CT

[Guest guest]

Welcome Mike!

You and your wife will find great knowledge and comfort here. Knowing

your not alone is a great comfort to most. Does your wife have

vasculitis or other illnesses along with the RP? If you get a chance,

please let us know what type of symptoms she was having along with the

RP and what tipped off the docs to make the diagnosis. We constantly

learn from each other and any and all associated symptoms can help us

learn and educate our doctors as to what to look for or recognize with

this rotten disease.

I am working on putting together an address and information list for the

group. If you feel comfortable would you please let me know your names,

address, phone# and information about children, grandchildren etc. We

are all like a family here and have decided to put together a list that

is handy to grab if we need to personally contact one another.

I'm having problems with my e-mail address so you can send me the info

to the group and I'll pick it up that way or if you want you can e-mail

me direct but you have to use my e-mail cath2000@....

Again, welcome we are so glad you have decided to join us.

AngieCATW1@... wrote:

> From: AngieCATW1@...

>

> In a message dated 02/17/2000 10:54:57 PM Eastern Standard Time,

> logger@... writes:

>

> << My name is Mike. My wife developed RP last summer. As the disease

> is rare

> we know little about it. Judging from the messages I've read the

> symptoms can

> vary a great deal. We were very lucky in that our doctors figured out

> what it

> was within a week. If they hadn't she'd have died as she was very

> close to

> death with congestive heart and kidney failure. It's good to find a

> group

> with whom to share.

>

> ---------------------------

[Guest guest]

Hey , what did you do with my pillow????? that ups man just passes my

house everyday but he never stops...LOL

My ears are hurting right now, did Angie get her pillow????

I just had to ask...lol

I love you!

Lu

[Guest guest]

--- E Burdick wrote:

> Welcome Mike and Gold bless you and your wife ! You

> will find that this is

> a wonderful group.

> B. CT

>

> A

> Burdick

> Circulation/Interlibrary Loan Phone:

> Yale Divinity Library Fax:

> 409 Prospect Street email: susan.burdick@...

> New Haven, CT

>

__________________________________________________

[Guest guest]

Hi and welcome o te group. i am sorr your wife ha RP, but i tink you

will find answers t mny questions in this group of vr loving and caring

people whoitherhave or are living with the ravages of this diseas. how

ws your wife diagnosed so uicil? som of us go years without diagnosis

so i am just curious how it s done so quikly. so glad you are with us.

sincerely

denise

[Guest guest]

Mike, welcome to the group. How is your wife doing now? There are some in

this group who have had RP for many years and have a lot of knowledge to

share. Please ask questions. I have RP and was diagnosed with it late last

August. My first known symptoms occurred last February. My nickname is

Ronnie (I am a woman) Given name (Rheanell)

In a message dated 2/17/2000 7:54:56 PM Pacific Standard Time,

logger@... writes:

<< My name is Mike. My wife developed RP last summer. As the disease is rare

we know little about it. Judging from the messages I've read the symptoms can

vary a great deal. We were very lucky in that our doctors figured out what it

was within a week. If they hadn't she'd have died as she was very close to

death with congestive heart and kidney failure. It's good to find a group

with whom to share. >>

[Guest guest]

Hello my name is Marie and I just found out that I am

pregnant and someone suggested this site. I am 10 1/2

months post-op WLS and now 6 weeks pregnant. Am I in

the right place?

Thanks,

Marie

__________________________________________________

[Guest guest]

Hi

I'm the new kid on the block...I have gone to Atlanta and have visted

with Dr. Duncans group. So now I'm waiting....

I have heard lots of good things about Dr. Duncan. If there is anyone

out-there that has had this surgery. Let me know.. Kath