Re: Newbie interested in AP

[Guest guest]

Hi Marj;

What a beautiful name!I am French Canadian with Abenaqui(dad) and

Cheyenne(mom) in my background.Add a little

Dutch,German,Irish,Scot,American and French and you see I am a real

soup.I am glad to see that you are holding on to your heritage,something

that I am so mad at myself for not doing.In French your first name means

Daisie.There is nothing so beautiful as a field of daisies bending in a

summer breeze.

I have Scleroderma ans my sister has Lupus.We both started AP just

by reading tons of material and asking our family doctors to write the

prescriptions and monitor us.This worked quite well for a time for my

sister but then she took a nose dive.Lupies have to be very careful od

the kind and dosage of antibiotics that they take compared to someone

with RA.A much lower dose seems to be the trick.My sister lives in the

Yukon but will be traveling to Vancouver to see an AP doctor and I can

pass on any information she gets if you want it.

Lynne

> Greetings,

>

> I'm new to this Group and learning the usage of antibiotics on

> individuals with autoimmune diseases.

>

> The PA contact from the Road Back Foundation sent me the names of

> three doctors that have used AP treatments. My concern is finding a

> medical professional that practices AP that will take Medicaid.

>

> I live in Upper Bucks County, S.E.PA and currently have been diagnosed

> with fibromyalgia, rheumatoid arthritis, SLE Lupus, dermatomyositis,

> and Sjogren's Syndrome.

>

> I'm currently taking Immuran 200mg/day and 10mg prednisone/day. The

> doctors are weaning me off the prednisone because of all the adverse

> reactions I'm having from prednisone.

>

> If anyone has any tips on what to do and not do please let me know.

>

> Marj GentleDeer EagleSong Winston

>

> Support the battered women's shelter on Pine Ridge Reservation!

> http://FriendsofPineRidgeReservation.org

> <http://FriendsofPineRidgeReservation.org>

>

> Helping Pine Ridge Reservation, one donation at a time!

> http://FriendsofPineRidgeReservation.org

> <http://FriendsofPineRidgeReservation.org>

>

> Tahca winyela ohanwaste, (Deer, female, person, gentle) GentleDeer

>

> " Indian blood is like gold, no matter how thinly spun it shines just

> as bright. "

>

> " Only if we stand together as one people can we hope to overcome all

> the injustices suffered by our people. We have to learn to agree to

> disagree, and stand as one people regardless of our personal

> differences. "

> Strong Heart Woman

>

>

[Guest guest]

Lynne, 

 

I would be happy to get info from your sister.  I was wondering if my

PCP(primary care physician) could administer the antibiotics, you just answered

that question.

 You still can honor your heritage now; its never too late to start.  Each one

of my grandparents were of Native American descent, so I'm Unami Lenape,

Mohawk(Susquehannock), and ee.  Of course I'm also English, Irish, and

German.

Marj GentleDeer EagleSong Winston

 

 Support the battered women's shelter on Pine Ridge Reservation!

http://FriendsofPineRidgeReservation.org

Helping Pine Ridge Reservation, one donation at a time!

http://FriendsofPineRidgeReservation.org

 

Tahca winyela ohanwaste, (Deer, female, person, gentle)  GentleDeer

                                                      

" Indian blood is like gold, no matter how thinly spun it shines just as bright. "

 

" Only if we stand together as one people can we hope to overcome all the

injustices suffered by our people.  We have to learn to agree to disagree, and

stand as one people regardless of our personal differences. "  

Strong Heart Woman

From: Lynne and Santos <lynneandsantos@...>

Subject: Re: rheumatic Newbie interested in AP

rheumatic

Date: Sunday, February 8, 2009, 9:22 PM

Hi Marj;

What a beautiful name!I am French Canadian with Abenaqui(dad) and

Cheyenne(mom) in my background.Add a little

Dutch,German, Irish,Scot, American and French and you see I am a real

soup.I am glad to see that you are holding on to your heritage,something

that I am so mad at myself for not doing.In French your first name means

Daisie.There is nothing so beautiful as a field of daisies bending in a

summer breeze.

I have Scleroderma ans my sister has Lupus.We both started AP just

by reading tons of material and asking our family doctors to write the

prescriptions and monitor us.This worked quite well for a time for my

sister but then she took a nose dive.Lupies have to be very careful od

the kind and dosage of antibiotics that they take compared to someone

with RA.A much lower dose seems to be the trick.My sister lives in the

Yukon but will be traveling to Vancouver to see an AP doctor and I can

pass on any information she gets if you want it.

Lynne

> Greetings,

>

> I'm new to this Group and learning the usage of antibiotics on

> individuals with autoimmune diseases.

>

> The PA contact from the Road Back Foundation sent me the names of

> three doctors that have used AP treatments. My concern is finding a

> medical professional that practices AP that will take Medicaid.

>

> I live in Upper Bucks County, S.E.PA and currently have been diagnosed

> with fibromyalgia, rheumatoid arthritis, SLE Lupus, dermatomyositis,

> and Sjogren's Syndrome.

>

> I'm currently taking Immuran 200mg/day and 10mg prednisone/day. The

> doctors are weaning me off the prednisone because of all the adverse

> reactions I'm having from prednisone.

>

> If anyone has any tips on what to do and not do please let me know.

>

> Marj GentleDeer EagleSong Winston

>

> Support the battered women's shelter on Pine Ridge Reservation!

> http://FriendsofPin eRidgeReservatio n.org

> <http://FriendsofPin eRidgeReservatio n.org>

>

> Helping Pine Ridge Reservation, one donation at a time!

> http://FriendsofPin eRidgeReservatio n.org

> <http://FriendsofPin eRidgeReservatio n.org>

>

> Tahca winyela ohanwaste, (Deer, female, person, gentle) GentleDeer

>

> " Indian blood is like gold, no matter how thinly spun it shines just

> as bright. "

>

> " Only if we stand together as one people can we hope to overcome all

> the injustices suffered by our people. We have to learn to agree to

> disagree, and stand as one people regardless of our personal

> differences. "

> Strong Heart Woman

>

>

[Guest guest]

Marj,

 

I am only German, was born there, so that makes me only German. Anyway glad yu

checked out this group. Welcome.

 

Eva

From: Lynne and Santos <lynneandsantos@ citenet.net>

Subject: Re: rheumatic Newbie interested in AP

rheumatic@grou ps.com

Date: Sunday, February 8, 2009, 9:22 PM

Hi Marj;

What a beautiful name!I am French Canadian with Abenaqui(dad) and

Cheyenne(mom) in my background.Add a little

Dutch,German, Irish,Scot, American and French and you see I am a real

soup.I am glad to see that you are holding on to your heritage,something

that I am so mad at myself for not doing.In French your first name means

Daisie.There is nothing so beautiful as a field of daisies bending in a

summer breeze.

I have Scleroderma ans my sister has Lupus.We both started AP just

by reading tons of material and asking our family doctors to write the

prescriptions and monitor us.This worked quite well for a time for my

sister but then she took a nose dive.Lupies have to be very careful od

the kind and dosage of antibiotics that they take compared to someone

with RA.A much lower dose seems to be the trick.My sister lives in the

Yukon but will be traveling to Vancouver to see an AP doctor and I can

pass on any information she gets if you want it.

Lynne

> Greetings,

>

> I'm new to this Group and learning the usage of antibiotics on

> individuals with autoimmune diseases.

>

> The PA contact from the Road Back Foundation sent me the names of

> three doctors that have used AP treatments. My concern is finding a

> medical professional that practices AP that will take Medicaid.

>

> I live in Upper Bucks County, S.E.PA and currently have been diagnosed

> with fibromyalgia, rheumatoid arthritis, SLE Lupus, dermatomyositis,

> and Sjogren's Syndrome.

>

> I'm currently taking Immuran 200mg/day and 10mg prednisone/day. The

> doctors are weaning me off the prednisone because of all the adverse

> reactions I'm having from prednisone.

>

> If anyone has any tips on what to do and not do please let me know.

>

> Marj GentleDeer EagleSong Winston

>

> Support the battered women's shelter on Pine Ridge Reservation!

> http://FriendsofPin eRidgeReservatio n.org

> <http://FriendsofPin eRidgeReservatio n.org>

>

> Helping Pine Ridge Reservation, one donation at a time!

> http://FriendsofPin eRidgeReservatio n.org

> <http://FriendsofPin eRidgeReservatio n.org>

>

> Tahca winyela ohanwaste, (Deer, female, person, gentle) GentleDeer

>

> " Indian blood is like gold, no matter how thinly spun it shines just

> as bright. "

>

> " Only if we stand together as one people can we hope to overcome all

> the injustices suffered by our people. We have to learn to agree to

> disagree, and stand as one people regardless of our personal

> differences. "

> Strong Heart Woman

>

>

[Guest guest]

Welcome. Please make sure to get checked out for Lyme's Disease. It may

very well be the underlying cause for all the other labels the medical folks

have given you. I hope like most of us you find your way back to much

better health and little to zero pain! Hang in there and know you are where

you are supposed to be in your journey. You have found us and we can help.

El

_____

From: rheumatic [mailto:rheumatic ] On Behalf

Of Marj Winston

Sent: Sunday, February 08, 2009 3:27 PM

rheumatic

Subject: rheumatic Newbie interested in AP

Greetings,

I'm new to this Group and learning the usage of antibiotics on individuals

with autoimmune diseases.

The PA contact from the Road Back Foundation sent me the names of three

doctors that have used AP treatments. My concern is finding a medical

professional that practices AP that will take Medicaid.

I live in Upper Bucks County, S.E.PA and currently have been diagnosed with

fibromyalgia, rheumatoid arthritis, SLE Lupus, dermatomyositis, and

Sjogren's Syndrome.

I'm currently taking Immuran 200mg/day and 10mg prednisone/day. The doctors

are weaning me off the prednisone because of all the adverse reactions I'm

having from prednisone.

If anyone has any tips on what to do and not do please let me know.

Marj GentleDeer EagleSong Winston

Support the battered women's shelter on Pine Ridge Reservation!

http://FriendsofPin <http://FriendsofPineRidgeReservation.org>

eRidgeReservation.org

Helping Pine Ridge Reservation, one donation at a time!

http://FriendsofPin <http://FriendsofPineRidgeReservation.org>

eRidgeReservation.org

Tahca winyela ohanwaste, (Deer, female, person, gentle) GentleDeer

" Indian blood is like gold, no matter how thinly spun it shines just as

bright. "

" Only if we stand together as one people can we hope to overcome all the

injustices suffered by our people. We have to learn to agree to disagree,

and stand as one people regardless of our personal differences. "

Strong Heart Woman

[Guest guest]

Hi, Marj, and welcome to the group! Wow, you seem to have been diagnosed with

every rheumatic illness. Is that even possible? If you haven't already done

so, review these websites: www.roadback.org, www.rheumatic.org ,

www.rheumaticsupport.org, and www.tarci.net. Read these carefully and learn as

much as you can about Dr. Brown's antibiotic protocol. Knowledge will help you

in your search for an MD who is willing to help. Contact a coordinator at

www.rheumaticsupport.org and ask for names of known A/P practitioners in your

area and keep your fingers crossed.

I had gotten a referral to an Infectious Disease Specialist from my Primary

Internist (after I 'fired' my rheumy), scheduled an appointment, sent him info

on A/P and later got a letter from this ID Doc advising he would NOT help me

pursue A/P therapy and cancelled the appointment! I didn't even get a chance to

talk to the guy. I suspect I was a victim of this particular hospital system's

unwritten rule, namely do not step on the toes of a fellow physician. I guess

that was my mistake in thinking this ID doc would help, given that he and my

ex-rheumy are a part of the same hospital system. Now it's back to square one.

Even my primary internist said " she would love to help me but could not because

infections were not her specialty. " Is that a cop out or what... She, too, is

part of the same hospital system.

I wish you good luck in your search for someone who will help. All the best.

Diane Springob

________________________________

From: Marj Winston <magenw7@...>

rheumatic

Sent: Sunday, February 8, 2009 3:26:46 PM

Subject: rheumatic Newbie interested in AP

Greetings,

I'm new to this Group and learning the usage of antibiotics on individuals with

autoimmune diseases.

The PA contact from the Road Back Foundation sent me the names of three doctors

that have used AP treatments. My concern is finding a medical professional that

practices AP that will take Medicaid.

I live in Upper Bucks County, S.E.PA and currently have been diagnosed with

fibromyalgia, rheumatoid arthritis, SLE Lupus, dermatomyositis, and Sjogren's

Syndrome.

I'm currently taking Immuran 200mg/day and 10mg prednisone/day. The doctors are

weaning me off the prednisone because of all the adverse reactions I'm having

from prednisone.

If anyone has any tips on what to do and not do please let me know.

Marj GentleDeer EagleSong Winston

Support the battered women's shelter on Pine Ridge Reservation!

http://FriendsofPin eRidgeReservatio n.org

Helping Pine Ridge Reservation, one donation at a time!

http://FriendsofPin eRidgeReservatio n.org

Tahca winyela ohanwaste, (Deer, female, person, gentle) GentleDeer

" Indian blood is like gold, no matter how thinly spun it shines just as bright. "

" Only if we stand together as one people can we hope to overcome all the

injustices suffered by our people. We have to learn to agree to disagree, and

stand as one people regardless of our personal differences. "

Strong Heart Woman

[Guest guest]

Hello Diane,  I'm so sorry it didn't work out with your Infectious Disease

Doctor. These docs act like they attended kindergarten.  I supposed they are a

click and the word got around.  You know what?  If they are that immature, then

you don't want them.  That bunch seem like if they can't make the big bucks from

Big Pharm meds on you, they don't want you and you are better off w/o them.  I

had the opposite experience.  The Rheumy I went to (first visit) sent me up to

Infectious Disease Doc immediately and didn't charge me for the visit.  I owe

him one and before I leave this area, I will present him with a thank you note

and bottle of wine.  I am pleased with my I.D.  Keep searching!  What area do

you live in?  Take care~~~Dolores & Mike

From: Diane Springob <springobd@...>

Subject: Re: rheumatic Newbie interested in AP

rheumatic

Date: Monday, February 9, 2009, 7:56 AM

Hi, Marj, and welcome to the group! Wow, you seem to have been diagnosed with

every rheumatic illness. Is that even possible? If you haven't already done so,

review these websites: www.roadback. org, www.rheumatic. org ,

www.rheumaticsuppor t.org, and www.tarci.net. Read these carefully and learn as

much as you can about Dr. Brown's antibiotic protocol. Knowledge will help you

in your search for an MD who is willing to help. Contact a coordinator at

www.rheumaticsuppor t.org and ask for names of known A/P practitioners in your

area and keep your fingers crossed.

I had gotten a referral to an Infectious Disease Specialist from my Primary

Internist (after I 'fired' my rheumy), scheduled an appointment, sent him info

on A/P and later got a letter from this ID Doc advising he would NOT help me

pursue A/P therapy and cancelled the appointment! I didn't even get a chance to

talk to the guy. I suspect I was a victim of this particular hospital system's

unwritten rule, namely do not step on the toes of a fellow physician. I guess

that was my mistake in thinking this ID doc would help, given that he and my

ex-rheumy are a part of the same hospital system. Now it's back to square one.

Even my primary internist said " she would love to help me but could not because

infections were not her specialty. " Is that a cop out or what... She, too, is

part of the same hospital system.

I wish you good luck in your search for someone who will help. All the best.

Diane Springob

____________ _________ _________ __

From: Marj Winston <magenw7 (DOT) com>

rheumatic@grou ps.com

Sent: Sunday, February 8, 2009 3:26:46 PM

Subject: rheumatic Newbie interested in AP

Greetings,

I'm new to this Group and learning the usage of antibiotics on individuals with

autoimmune diseases.

The PA contact from the Road Back Foundation sent me the names of three doctors

that have used AP treatments. My concern is finding a medical professional that

practices AP that will take Medicaid.

I live in Upper Bucks County, S.E.PA and currently have been diagnosed with

fibromyalgia, rheumatoid arthritis, SLE Lupus, dermatomyositis, and Sjogren's

Syndrome.

I'm currently taking Immuran 200mg/day and 10mg prednisone/day. The doctors are

weaning me off the prednisone because of all the adverse reactions I'm having

from prednisone.

If anyone has any tips on what to do and not do please let me know.

Marj GentleDeer EagleSong Winston

Support the battered women's shelter on Pine Ridge Reservation!

http://FriendsofPin eRidgeReservatio n.org

Helping Pine Ridge Reservation, one donation at a time!

http://FriendsofPin eRidgeReservatio n.org

Tahca winyela ohanwaste, (Deer, female, person, gentle) GentleDeer

" Indian blood is like gold, no matter how thinly spun it shines just as bright. "

" Only if we stand together as one people can we hope to overcome all the

injustices suffered by our people. We have to learn to agree to disagree, and

stand as one people regardless of our personal differences. "

Strong Heart Woman

[Guest guest]

Hi Diane and everyone,

 

I would like to thank the person who told me about this Group and Antibiotic

Therapy and to those posting links to more information.

 

I sometimes feel its hopeless but continue to fight for a treatment that works. 

I now feel that there is hope with Antibiotic Therapy.  I'm hoping that there

are doctors who use AP that will take Medcaid.

 

I'm hoping to be able to take some of the info on Antibiotic Therapy to my PCP

when I see her this Thurs.

 

Tommorrow I have to go in to Philly to see my Rheumy and I'm not looking forward

to it.  The pain in my back is getting worse and she told me that's because of

all the weight I've put on since I started taking Prednisone that I need

physical therapy and exercise.  When I told my friends they replied " Bull Shit,

you've had this kind of back pain since we first met you 14 years ago and you

were 75 lbs lighter then " .

 

I will let you know how I make out tommorrow and I will continue to read all the

info everyone has supplied me with.

Thank you.

Marj GentleDeer EagleSong Winston

 

 Support the battered women's shelter on Pine Ridge Reservation!

http://FriendsofPineRidgeReservation.org

Helping Pine Ridge Reservation, one donation at a time!

http://FriendsofPineRidgeReservation.org

 

Tahca winyela ohanwaste, (Deer, female, person, gentle)  GentleDeer

                                                      

" Indian blood is like gold, no matter how thinly spun it shines just as bright. "

 

" Only if we stand together as one people can we hope to overcome all the

injustices suffered by our people.  We have to learn to agree to disagree, and

stand as one people regardless of our personal differences. "  

Strong Heart Woman

From: Diane Springob <springobd@...>

Subject: Re: rheumatic Newbie interested in AP

rheumatic

Date: Monday, February 9, 2009, 12:56 PM

Hi, Marj, and welcome to the group! Wow, you seem to have been diagnosed with

every rheumatic illness. Is that even possible? If you haven't already done so,

review these websites: www.roadback. org, www.rheumatic. org ,

www.rheumaticsuppor t.org, and www.tarci.net. Read these carefully and learn as

much as you can about Dr. Brown's antibiotic protocol. Knowledge will help you

in your search for an MD who is willing to help. Contact a coordinator at

www.rheumaticsuppor t.org and ask for names of known A/P practitioners in your

area and keep your fingers crossed.

I had gotten a referral to an Infectious Disease Specialist from my Primary

Internist (after I 'fired' my rheumy), scheduled an appointment, sent him info

on A/P and later got a letter from this ID Doc advising he would NOT help me

pursue A/P therapy and cancelled the appointment! I didn't even get a chance to

talk to the guy. I suspect I was a victim of this particular hospital system's

unwritten rule, namely do not step on the toes of a fellow physician. I guess

that was my mistake in thinking this ID doc would help, given that he and my

ex-rheumy are a part of the same hospital system. Now it's back to square one.

Even my primary internist said " she would love to help me but could not because

infections were not her specialty. " Is that a cop out or what... She, too, is

part of the same hospital system.

I wish you good luck in your search for someone who will help. All the best.

Diane Springob

____________ _________ _________ __

From: Marj Winston <magenw7 (DOT) com>

rheumatic@grou ps.com

Sent: Sunday, February 8, 2009 3:26:46 PM

Subject: rheumatic Newbie interested in AP

Greetings,

I'm new to this Group and learning the usage of antibiotics on individuals with

autoimmune diseases.

The PA contact from the Road Back Foundation sent me the names of three doctors

that have used AP treatments. My concern is finding a medical professional that

practices AP that will take Medicaid.

I live in Upper Bucks County, S.E.PA and currently have been diagnosed with

fibromyalgia, rheumatoid arthritis, SLE Lupus, dermatomyositis, and Sjogren's

Syndrome.

I'm currently taking Immuran 200mg/day and 10mg prednisone/day. The doctors are

weaning me off the prednisone because of all the adverse reactions I'm having

from prednisone.

If anyone has any tips on what to do and not do please let me know.

Marj GentleDeer EagleSong Winston

Support the battered women's shelter on Pine Ridge Reservation!

http://FriendsofPin eRidgeReservatio n.org

Helping Pine Ridge Reservation, one donation at a time!

http://FriendsofPin eRidgeReservatio n.org

Tahca winyela ohanwaste, (Deer, female, person, gentle) GentleDeer

" Indian blood is like gold, no matter how thinly spun it shines just as bright. "

" Only if we stand together as one people can we hope to overcome all the

injustices suffered by our people. We have to learn to agree to disagree, and

stand as one people regardless of our personal differences. "

Strong Heart Woman

[Guest guest]

Marj,

 

have you ever been diagnosed with sciatic nerve problem? Even when I was slimmer

I had back problems and they finally diagnosed this as sciatica. I send you a

e-mail about this on your personal e-mail.

 

Eva

From: Diane Springob <springobd (DOT) com>

Subject: Re: rheumatic Newbie interested in AP

rheumatic@grou ps.com

Date: Monday, February 9, 2009, 12:56 PM

Hi, Marj, and welcome to the group! Wow, you seem to have been diagnosed with

every rheumatic illness. Is that even possible? If you haven't already done so,

review these websites: www.roadback. org, www.rheumatic. org ,

www.rheumaticsuppor t.org, and www.tarci.net. Read these carefully and learn as

much as you can about Dr. Brown's antibiotic protocol. Knowledge will help you

in your search for an MD who is willing to help. Contact a coordinator at

www.rheumaticsuppor t.org and ask for names of known A/P practitioners in your

area and keep your fingers crossed.

I had gotten a referral to an Infectious Disease Specialist from my Primary

Internist (after I 'fired' my rheumy), scheduled an appointment, sent him info

on A/P and later got a letter from this ID Doc advising he would NOT help me

pursue A/P therapy and cancelled the appointment! I didn't even get a chance to

talk to the guy. I suspect I was a victim of this particular hospital system's

unwritten rule, namely do not step on the toes of a fellow physician. I guess

that was my mistake in thinking this ID doc would help, given that he and my

ex-rheumy are a part of the same hospital system. Now it's back to square one.

Even my primary internist said " she would love to help me but could not because

infections were not her specialty. " Is that a cop out or what... She, too, is

part of the same hospital system.

I wish you good luck in your search for someone who will help. All the best.

Diane Springob

____________ _________ _________ __

From: Marj Winston <magenw7 (DOT) com>

rheumatic@grou ps.com

Sent: Sunday, February 8, 2009 3:26:46 PM

Subject: rheumatic Newbie interested in AP

Greetings,

I'm new to this Group and learning the usage of antibiotics on individuals with

autoimmune diseases.

The PA contact from the Road Back Foundation sent me the names of three doctors

that have used AP treatments. My concern is finding a medical professional that

practices AP that will take Medicaid.

I live in Upper Bucks County, S.E.PA and currently have been diagnosed with

fibromyalgia, rheumatoid arthritis, SLE Lupus, dermatomyositis, and Sjogren's

Syndrome.

I'm currently taking Immuran 200mg/day and 10mg prednisone/day. The doctors are

weaning me off the prednisone because of all the adverse reactions I'm having

from prednisone.

If anyone has any tips on what to do and not do please let me know.

Marj GentleDeer EagleSong Winston

Support the battered women's shelter on Pine Ridge Reservation!

http://FriendsofPin eRidgeReservatio n.org

Helping Pine Ridge Reservation, one donation at a time!

http://FriendsofPin eRidgeReservatio n.org

Tahca winyela ohanwaste, (Deer, female, person, gentle) GentleDeer

" Indian blood is like gold, no matter how thinly spun it shines just as bright. "

" Only if we stand together as one people can we hope to overcome all the

injustices suffered by our people. We have to learn to agree to disagree, and

stand as one people regardless of our personal differences. "

Strong Heart Woman

[Guest guest]

I've been diagnosed with rheumatoid arthritis of the neck and back by having

a MRI.  I was also told that I have herniated and ruptured discs in my lower

back and neck.  According to the MRI my spinal column each vertebrae is

slanted.  Something like this:  \/\/\/\ from the base of my head to my

tailbone.  So they tell me to lose weight and I won't hurt so much.  Yeah,

right. I have had this back pain since 1995 and I've been having MRI's that have

shown the herniated and ruptured discs since 1998 and keep getting told to see a

neurosurgeon.

 

So I asked the Neurologist I see about it and was told that there is no use me

seeing a neurosurgeon until the DM is under control.  So no matter what weight I

am my back will hurt and I'll need pain killers so I can just move around our

house.

 

Sorry I was rather wordy but when it comes to my weight I'm a little touchy

since I weighed about 140lbs,(5'7.5 " )when the back pain began.

Marj GentleDeer EagleSong Winston

 

 Support the battered women's shelter on Pine Ridge Reservation!

http://FriendsofPineRidgeReservation.org

Helping Pine Ridge Reservation, one donation at a time!

http://FriendsofPineRidgeReservation.org

 

Tahca winyela ohanwaste, (Deer, female, person, gentle)  GentleDeer

                                                      

" Indian blood is like gold, no matter how thinly spun it shines just as bright. "

 

" Only if we stand together as one people can we hope to overcome all the

injustices suffered by our people.  We have to learn to agree to disagree, and

stand as one people regardless of our personal differences. "  

Strong Heart Woman

From: Diane Springob <springobd (DOT) com>

Subject: Re: rheumatic Newbie interested in AP

rheumatic@grou ps.com

Date: Monday, February 9, 2009, 12:56 PM

Hi, Marj, and welcome to the group! Wow, you seem to have been diagnosed with

every rheumatic illness. Is that even possible? If you haven't already done so,

review these websites: www.roadback. org, www.rheumatic. org ,

www.rheumaticsuppor t.org, and www.tarci.net. Read these carefully and learn as

much as you can about Dr. Brown's antibiotic protocol. Knowledge will help you

in your search for an MD who is willing to help. Contact a coordinator at

www.rheumaticsuppor t.org and ask for names of known A/P practitioners in your

area and keep your fingers crossed.

I had gotten a referral to an Infectious Disease Specialist from my Primary

Internist (after I 'fired' my rheumy), scheduled an appointment, sent him info

on A/P and later got a letter from this ID Doc advising he would NOT help me

pursue A/P therapy and cancelled the appointment! I didn't even get a chance to

talk to the guy. I suspect I was a victim of this particular hospital system's

unwritten rule, namely do not step on the toes of a fellow physician. I guess

that was my mistake in thinking this ID doc would help, given that he and my

ex-rheumy are a part of the same hospital system. Now it's back to square one.

Even my primary internist said " she would love to help me but could not because

infections were not her specialty. " Is that a cop out or what... She, too, is

part of the same hospital system.

I wish you good luck in your search for someone who will help. All the best.

Diane Springob

____________ _________ _________ __

From: Marj Winston <magenw7 (DOT) com>

rheumatic@grou ps.com

Sent: Sunday, February 8, 2009 3:26:46 PM

Subject: rheumatic Newbie interested in AP

Greetings,

I'm new to this Group and learning the usage of antibiotics on individuals with

autoimmune diseases.

The PA contact from the Road Back Foundation sent me the names of three doctors

that have used AP treatments. My concern is finding a medical professional that

practices AP that will take Medicaid.

I live in Upper Bucks County, S.E.PA and currently have been diagnosed with

fibromyalgia, rheumatoid arthritis, SLE Lupus, dermatomyositis, and Sjogren's

Syndrome.

I'm currently taking Immuran 200mg/day and 10mg prednisone/day. The doctors are

weaning me off the prednisone because of all the adverse reactions I'm having

from prednisone.

If anyone has any tips on what to do and not do please let me know.

Marj GentleDeer EagleSong Winston

Support the battered women's shelter on Pine Ridge Reservation!

http://FriendsofPin eRidgeReservatio n.org

Helping Pine Ridge Reservation, one donation at a time!

http://FriendsofPin eRidgeReservatio n.org

Tahca winyela ohanwaste, (Deer, female, person, gentle) GentleDeer

" Indian blood is like gold, no matter how thinly spun it shines just as bright. "

" Only if we stand together as one people can we hope to overcome all the

injustices suffered by our people. We have to learn to agree to disagree, and

stand as one people regardless of our personal differences. "

Strong Heart Woman

[Guest guest]

Hi, Dolores:

I couldn't agree with you more.  Thanks for the pep talk...I needed that. 

Finding the right doc is soooo frustrating but I will continue looking.  I live

in Cleveland, Oh.  Thanks,

Diane Springob

________________________________

From: mike rosner <martysfolks2004@...>

rheumatic

Sent: Monday, February 9, 2009 8:16:20 AM

Subject: Re: rheumatic Newbie interested in AP

Hello Diane,  I'm so sorry it didn't work out with your Infectious Disease

Doctor. These docs act like they attended kindergarten.  I supposed they are a

click and the word got around.  You know what?  If they are that immature, then

you don't want them.  That bunch seem like if they can't make the big bucks from

Big Pharm meds on you, they don't want you and you are better off w/o them.  I

had the opposite experience.  The Rheumy I went to (first visit) sent me up to

Infectious Disease Doc immediately and didn't charge me for the visit.  I owe

him one and before I leave this area, I will present him with a thank you note

and bottle of wine.  I am pleased with my I.D.  Keep searching!  What area do

you live in?  Take care~~~Dolores & Mike

From: Diane Springob <springobd (DOT) com>

Subject: Re: rheumatic Newbie interested in AP

rheumatic@grou ps.com

Date: Monday, February 9, 2009, 7:56 AM

Hi, Marj, and welcome to the group! Wow, you seem to have been diagnosed with

every rheumatic illness. Is that even possible? If you haven't already done so,

review these websites: www.roadback. org, www.rheumatic. org ,

www.rheumaticsuppor t..org, and www.tarci.net. Read these carefully and learn as

much as you can about Dr. Brown's antibiotic protocol. Knowledge will help you

in your search for an MD who is willing to help. Contact a coordinator at

www.rheumaticsuppor t.org and ask for names of known A/P practitioners in your

area and keep your fingers crossed.

I had gotten a referral to an Infectious Disease Specialist from my Primary

Internist (after I 'fired' my rheumy), scheduled an appointment, sent him info

on A/P and later got a letter from this ID Doc advising he would NOT help me

pursue A/P therapy and cancelled the appointment! I didn't even get a chance to

talk to the guy. I suspect I was a victim of this particular hospital system's

unwritten rule, namely do not step on the toes of a fellow physician. I guess

that was my mistake in thinking this ID doc would help, given that he and my

ex-rheumy are a part of the same hospital system. Now it's back to square one.

Even my primary internist said " she would love to help me but could not because

infections were not her specialty. " Is that a cop out or what... She, too, is

part of the same hospital system.

I wish you good luck in your search for someone who will help. All the best.

Diane Springob

____________ _________ _________ __

From: Marj Winston <magenw7 (DOT) com>

rheumatic@grou ps.com

Sent: Sunday, February 8, 2009 3:26:46 PM

Subject: rheumatic Newbie interested in AP

Greetings,

I'm new to this Group and learning the usage of antibiotics on individuals with

autoimmune diseases.

The PA contact from the Road Back Foundation sent me the names of three doctors

that have used AP treatments. My concern is finding a medical professional that

practices AP that will take Medicaid.

I live in Upper Bucks County, S.E.PA and currently have been diagnosed with

fibromyalgia, rheumatoid arthritis, SLE Lupus, dermatomyositis, and Sjogren's

Syndrome.

I'm currently taking Immuran 200mg/day and 10mg prednisone/day. The doctors are

weaning me off the prednisone because of all the adverse reactions I'm having

from prednisone.

If anyone has any tips on what to do and not do please let me know.

Marj GentleDeer EagleSong Winston

Support the battered women's shelter on Pine Ridge Reservation!

http://FriendsofPin eRidgeReservatio n.org

Helping Pine Ridge Reservation, one donation at a time!

http://FriendsofPin eRidgeReservatio n.org

Tahca winyela ohanwaste, (Deer, female, person, gentle) GentleDeer

" Indian blood is like gold, no matter how thinly spun it shines just as bright. "

" Only if we stand together as one people can we hope to overcome all the

injustices suffered by our people. We have to learn to agree to disagree, and

stand as one people regardless of our personal differences. "

Strong Heart Woman

[Guest guest]

Hi Marj:

If you visit www.tarci.net (The Arthritis Research Center, Inc.), click on LINKS

(on left side), then click on the last name -- Burton Wellness Center -- they

have an office at 321 E. Emmaus Ave., town, PA 18103 which I understand is

not too far from Philly.  Their phone number is 610-791-2453 and their fax is

610-791-9974.  They do practice Dr. Brown's A/P therapy.  Give them a

call..perhaps they accept Medicaid.  Good luck!!

Diane Springob 

________________________________

From: Marj Winston <magenw7@...>

rheumatic

Sent: Monday, February 9, 2009 11:14:26 AM

Subject: Re: rheumatic Newbie interested in AP

Hi Diane and everyone,

 

I would like to thank the person who told me about this Group and Antibiotic

Therapy and to those posting links to more information.

 

I sometimes feel its hopeless but continue to fight for a treatment that works. 

I now feel that there is hope with Antibiotic Therapy.  I'm hoping that there

are doctors who use AP that will take Medcaid.

 

I'm hoping to be able to take some of the info on Antibiotic Therapy to my PCP

when I see her this Thurs.

 

Tommorrow I have to go in to Philly to see my Rheumy and I'm not looking forward

to it.  The pain in my back is getting worse and she told me that's because of

all the weight I've put on since I started taking Prednisone that I need

physical therapy and exercise.  When I told my friends they replied " Bull Shit,

you've had this kind of back pain since we first met you 14 years ago and you

were 75 lbs lighter then " .

 

I will let you know how I make out tommorrow and I will continue to read all the

info everyone has supplied me with.

Thank you.

Marj GentleDeer EagleSong Winston

 

 Support the battered women's shelter on Pine Ridge Reservation!

http://FriendsofPin eRidgeReservatio n.org

Helping Pine Ridge Reservation, one donation at a time!

http://FriendsofPin eRidgeReservatio n.org

 

Tahca winyela ohanwaste, (Deer, female, person, gentle)  GentleDeer

                                                      

" Indian blood is like gold, no matter how thinly spun it shines just as bright. "

 

" Only if we stand together as one people can we hope to overcome all the

injustices suffered by our people.  We have to learn to agree to disagree, and

stand as one people regardless of our personal differences. "  

Strong Heart Woman

From: Diane Springob <springobd (DOT) com>

Subject: Re: rheumatic Newbie interested in AP

rheumatic@grou ps.com

Date: Monday, February 9, 2009, 12:56 PM

Hi, Marj, and welcome to the group! Wow, you seem to have been diagnosed with

every rheumatic illness. Is that even possible? If you haven't already done so,

review these websites: www.roadback. org, www.rheumatic. org ,

www.rheumaticsuppor t.org, and www.tarci.net. Read these carefully and learn as

much as you can about Dr. Brown's antibiotic protocol. Knowledge will help you

in your search for an MD who is willing to help. Contact a coordinator at

www.rheumaticsuppor t.org and ask for names of known A/P practitioners in your

area and keep your fingers crossed.

I had gotten a referral to an Infectious Disease Specialist from my Primary

Internist (after I 'fired' my rheumy), scheduled an appointment, sent him info

on A/P and later got a letter from this ID Doc advising he would NOT help me

pursue A/P therapy and cancelled the appointment! I didn't even get a chance to

talk to the guy. I suspect I was a victim of this particular hospital system's

unwritten rule, namely do not step on the toes of a fellow physician. I guess

that was my mistake in thinking this ID doc would help, given that he and my

ex-rheumy are a part of the same hospital system. Now it's back to square one.

Even my primary internist said " she would love to help me but could not because

infections were not her specialty. " Is that a cop out or what... She, too, is

part of the same hospital system.

I wish you good luck in your search for someone who will help. All the best.

Diane Springob

____________ _________ _________ __

From: Marj Winston <magenw7 (DOT) com>

rheumatic@grou ps.com

Sent: Sunday, February 8, 2009 3:26:46 PM

Subject: rheumatic Newbie interested in AP

Greetings,

I'm new to this Group and learning the usage of antibiotics on individuals with

autoimmune diseases.

The PA contact from the Road Back Foundation sent me the names of three doctors

that have used AP treatments. My concern is finding a medical professional that

practices AP that will take Medicaid.

I live in Upper Bucks County, S.E.PA and currently have been diagnosed with

fibromyalgia, rheumatoid arthritis, SLE Lupus, dermatomyositis, and Sjogren's

Syndrome.

I'm currently taking Immuran 200mg/day and 10mg prednisone/day. The doctors are

weaning me off the prednisone because of all the adverse reactions I'm having

from prednisone.

If anyone has any tips on what to do and not do please let me know.

Marj GentleDeer EagleSong Winston

Support the battered women's shelter on Pine Ridge Reservation!

http://FriendsofPin eRidgeReservatio n.org

Helping Pine Ridge Reservation, one donation at a time!

http://FriendsofPin eRidgeReservatio n.org

Tahca winyela ohanwaste, (Deer, female, person, gentle) GentleDeer

" Indian blood is like gold, no matter how thinly spun it shines just as bright. "

" Only if we stand together as one people can we hope to overcome all the

injustices suffered by our people. We have to learn to agree to disagree, and

stand as one people regardless of our personal differences. "

Strong Heart Woman

[Guest guest]

Hello,

I have just found this site and I am soooo glad.

Does anyone know a Dr. in Texas that does the A/P treatment for RA?

Thank you,

kathy

________________________________

From: Diane Springob <springobd@...>

rheumatic

Sent: Monday, February 9, 2009 3:22:40 PM

Subject: Re: rheumatic Newbie interested in AP

Hi, Dolores:

I couldn't agree with you more.  Thanks for the pep talk...I needed that. 

Finding the right doc is soooo frustrating but I will continue looking.  I live

in Cleveland, Oh.  Thanks,

Diane Springob

____________ _________ _________ __

From: mike rosner <martysfolks2004>

rheumatic@grou ps.com

Sent: Monday, February 9, 2009 8:16:20 AM

Subject: Re: rheumatic Newbie interested in AP

Hello Diane,  I'm so sorry it didn't work out with your Infectious Disease

Doctor. These docs act like they attended kindergarten.  I supposed they are a

click and the word got around.  You know what?  If they are that immature, then

you don't want them.  That bunch seem like if they can't make the big bucks from

Big Pharm meds on you, they don't want you and you are better off w/o them.  I

had the opposite experience.  The Rheumy I went to (first visit) sent me up to

Infectious Disease Doc immediately and didn't charge me for the visit.  I owe

him one and before I leave this area, I will present him with a thank you note

and bottle of wine.  I am pleased with my I.D.  Keep searching!  What area do

you live in?  Take care~~~Dolores & Mike

From: Diane Springob <springobd (DOT) com>

Subject: Re: rheumatic Newbie interested in AP

rheumatic@grou ps.com

Date: Monday, February 9, 2009, 7:56 AM

Hi, Marj, and welcome to the group! Wow, you seem to have been diagnosed with

every rheumatic illness. Is that even possible? If you haven't already done so,

review these websites: www.roadback. org, www.rheumatic. org ,

www.rheumaticsuppor t..org, and www.tarci.net. Read these carefully and learn as

much as you can about Dr. Brown's antibiotic protocol. Knowledge will help you

in your search for an MD who is willing to help. Contact a coordinator at

www.rheumaticsuppor t.org and ask for names of known A/P practitioners in your

area and keep your fingers crossed.

I had gotten a referral to an Infectious Disease Specialist from my Primary

Internist (after I 'fired' my rheumy), scheduled an appointment, sent him info

on A/P and later got a letter from this ID Doc advising he would NOT help me

pursue A/P therapy and cancelled the appointment! I didn't even get a chance to

talk to the guy. I suspect I was a victim of this particular hospital system's

unwritten rule, namely do not step on the toes of a fellow physician. I guess

that was my mistake in thinking this ID doc would help, given that he and my

ex-rheumy are a part of the same hospital system. Now it's back to square one.

Even my primary internist said " she would love to help me but could not because

infections were not her specialty. " Is that a cop out or what... She, too, is

part of the same hospital system.

I wish you good luck in your search for someone who will help. All the best.

Diane Springob

____________ _________ _________ __

From: Marj Winston <magenw7 (DOT) com>

rheumatic@grou ps.com

Sent: Sunday, February 8, 2009 3:26:46 PM

Subject: rheumatic Newbie interested in AP

Greetings,

I'm new to this Group and learning the usage of antibiotics on individuals with

autoimmune diseases.

The PA contact from the Road Back Foundation sent me the names of three doctors

that have used AP treatments. My concern is finding a medical professional that

practices AP that will take Medicaid.

I live in Upper Bucks County, S.E.PA and currently have been diagnosed with

fibromyalgia, rheumatoid arthritis, SLE Lupus, dermatomyositis, and Sjogren's

Syndrome.

I'm currently taking Immuran 200mg/day and 10mg prednisone/day. The doctors are

weaning me off the prednisone because of all the adverse reactions I'm having

from prednisone.

If anyone has any tips on what to do and not do please let me know.

Marj GentleDeer EagleSong Winston

Support the battered women's shelter on Pine Ridge Reservation!

http://FriendsofPin eRidgeReservatio n.org

Helping Pine Ridge Reservation, one donation at a time!

http://FriendsofPin eRidgeReservatio n.org

Tahca winyela ohanwaste, (Deer, female, person, gentle) GentleDeer

" Indian blood is like gold, no matter how thinly spun it shines just as bright. "

" Only if we stand together as one people can we hope to overcome all the

injustices suffered by our people. We have to learn to agree to disagree, and

stand as one people regardless of our personal differences. "

Strong Heart Woman

[Guest guest]

Kathy,

 

what area in TX do you live, I have a doctor I see. in Lufkin, TX

 

Eva

From: Diane Springob <springobd (DOT) com>

Subject: Re: rheumatic Newbie interested in AP

rheumatic@grou ps.com

Date: Monday, February 9, 2009, 7:56 AM

Hi, Marj, and welcome to the group! Wow, you seem to have been diagnosed with

every rheumatic illness. Is that even possible? If you haven't already done so,

review these websites: www.roadback. org, www.rheumatic. org ,

www.rheumaticsuppor t..org, and www.tarci.net. Read these carefully and learn as

much as you can about Dr. Brown's antibiotic protocol. Knowledge will help you

in your search for an MD who is willing to help. Contact a coordinator at

www.rheumaticsuppor t.org and ask for names of known A/P practitioners in your

area and keep your fingers crossed.

I had gotten a referral to an Infectious Disease Specialist from my Primary

Internist (after I 'fired' my rheumy), scheduled an appointment, sent him info

on A/P and later got a letter from this ID Doc advising he would NOT help me

pursue A/P therapy and cancelled the appointment! I didn't even get a chance to

talk to the guy. I suspect I was a victim of this particular hospital system's

unwritten rule, namely do not step on the toes of a fellow physician. I guess

that was my mistake in thinking this ID doc would help, given that he and my

ex-rheumy are a part of the same hospital system. Now it's back to square one.

Even my primary internist said " she would love to help me but could not because

infections were not her specialty. " Is that a cop out or what... She, too, is

part of the same hospital system.

I wish you good luck in your search for someone who will help. All the best.

Diane Springob

____________ _________ _________ __

From: Marj Winston <magenw7 (DOT) com>

rheumatic@grou ps.com

Sent: Sunday, February 8, 2009 3:26:46 PM

Subject: rheumatic Newbie interested in AP

Greetings,

I'm new to this Group and learning the usage of antibiotics on individuals with

autoimmune diseases.

The PA contact from the Road Back Foundation sent me the names of three doctors

that have used AP treatments. My concern is finding a medical professional that

practices AP that will take Medicaid.

I live in Upper Bucks County, S.E.PA and currently have been diagnosed with

fibromyalgia, rheumatoid arthritis, SLE Lupus, dermatomyositis, and Sjogren's

Syndrome.

I'm currently taking Immuran 200mg/day and 10mg prednisone/day. The doctors are

weaning me off the prednisone because of all the adverse reactions I'm having

from prednisone.

If anyone has any tips on what to do and not do please let me know.

Marj GentleDeer EagleSong Winston

Support the battered women's shelter on Pine Ridge Reservation!

http://FriendsofPin eRidgeReservatio n.org

Helping Pine Ridge Reservation, one donation at a time!

http://FriendsofPin eRidgeReservatio n.org

Tahca winyela ohanwaste, (Deer, female, person, gentle) GentleDeer

" Indian blood is like gold, no matter how thinly spun it shines just as bright. "

" Only if we stand together as one people can we hope to overcome all the

injustices suffered by our people. We have to learn to agree to disagree, and

stand as one people regardless of our personal differences. "

Strong Heart Woman

[Guest guest]

Hi Dolores,

 

I'm a newbie but I found an AP contact for PA at the Road Back

Foundation website.  They should have one for Ohio also.

 

Like you I'm getting tired of the doctors and their games but I know I will keep

on trucking until all my options are tried.

Marj GentleDeer EagleSong Winston

 

 Support the battered women's shelter on Pine Ridge Reservation!

http://FriendsofPineRidgeReservation.org

Helping Pine Ridge Reservation, one donation at a time!

http://FriendsofPineRidgeReservation.org

 

Tahca winyela ohanwaste, (Deer, female, person, gentle)  GentleDeer

                                                      

" Indian blood is like gold, no matter how thinly spun it shines just as bright. "

 

" Only if we stand together as one people can we hope to overcome all the

injustices suffered by our people.  We have to learn to agree to disagree, and

stand as one people regardless of our personal differences. "  

Strong Heart Woman

From: Diane Springob <springobd (DOT) com>

Subject: Re: rheumatic Newbie interested in AP

rheumatic@grou ps.com

Date: Monday, February 9, 2009, 7:56 AM

Hi, Marj, and welcome to the group! Wow, you seem to have been diagnosed with

every rheumatic illness. Is that even possible? If you haven't already done so,

review these websites: www.roadback. org, www.rheumatic. org ,

www.rheumaticsuppor t..org, and www.tarci.net. Read these carefully and learn as

much as you can about Dr. Brown's antibiotic protocol. Knowledge will help you

in your search for an MD who is willing to help. Contact a coordinator at

www.rheumaticsuppor t.org and ask for names of known A/P practitioners in your

area and keep your fingers crossed.

I had gotten a referral to an Infectious Disease Specialist from my Primary

Internist (after I 'fired' my rheumy), scheduled an appointment, sent him info

on A/P and later got a letter from this ID Doc advising he would NOT help me

pursue A/P therapy and cancelled the appointment! I didn't even get a chance to

talk to the guy. I suspect I was a victim of this particular hospital system's

unwritten rule, namely do not step on the toes of a fellow physician. I guess

that was my mistake in thinking this ID doc would help, given that he and my

ex-rheumy are a part of the same hospital system. Now it's back to square one.

Even my primary internist said " she would love to help me but could not because

infections were not her specialty. " Is that a cop out or what... She, too, is

part of the same hospital system.

I wish you good luck in your search for someone who will help. All the best.

Diane Springob

____________ _________ _________ __

From: Marj Winston <magenw7 (DOT) com>

rheumatic@grou ps.com

Sent: Sunday, February 8, 2009 3:26:46 PM

Subject: rheumatic Newbie interested in AP

Greetings,

I'm new to this Group and learning the usage of antibiotics on individuals with

autoimmune diseases.

The PA contact from the Road Back Foundation sent me the names of three doctors

that have used AP treatments. My concern is finding a medical professional that

practices AP that will take Medicaid.

I live in Upper Bucks County, S.E.PA and currently have been diagnosed with

fibromyalgia, rheumatoid arthritis, SLE Lupus, dermatomyositis, and Sjogren's

Syndrome.

I'm currently taking Immuran 200mg/day and 10mg prednisone/day. The doctors are

weaning me off the prednisone because of all the adverse reactions I'm having

from prednisone.

If anyone has any tips on what to do and not do please let me know.

Marj GentleDeer EagleSong Winston

Support the battered women's shelter on Pine Ridge Reservation!

http://FriendsofPin eRidgeReservatio n.org

Helping Pine Ridge Reservation, one donation at a time!

http://FriendsofPin eRidgeReservatio n.org

Tahca winyela ohanwaste, (Deer, female, person, gentle) GentleDeer

" Indian blood is like gold, no matter how thinly spun it shines just as bright. "

" Only if we stand together as one people can we hope to overcome all the

injustices suffered by our people. We have to learn to agree to disagree, and

stand as one people regardless of our personal differences. "

Strong Heart Woman

[Guest guest]

Hi Diane,

 

Here is the e-mail address that I wrote to:  apdoctors@...

 

I hope this helps.

Marj GentleDeer EagleSong Winston

 

 Support the battered women's shelter on Pine Ridge Reservation!

http://FriendsofPineRidgeReservation.org

Helping Pine Ridge Reservation, one donation at a time!

http://FriendsofPineRidgeReservation.org

 

Tahca winyela ohanwaste, (Deer, female, person, gentle)  GentleDeer

                                                      

" Indian blood is like gold, no matter how thinly spun it shines just as bright. "

 

" Only if we stand together as one people can we hope to overcome all the

injustices suffered by our people.  We have to learn to agree to disagree, and

stand as one people regardless of our personal differences. "  

Strong Heart Woman

From: Diane Springob <springobd (DOT) com>

Subject: Re: rheumatic Newbie interested in AP

rheumatic@grou ps.com

Date: Monday, February 9, 2009, 7:56 AM

Hi, Marj, and welcome to the group! Wow, you seem to have been diagnosed with

every rheumatic illness. Is that even possible? If you haven't already done so,

review these websites: www.roadback. org, www.rheumatic. org ,

www.rheumaticsuppor t..org, and www.tarci.net. Read these carefully and learn as

much as you can about Dr. Brown's antibiotic protocol. Knowledge will help you

in your search for an MD who is willing to help. Contact a coordinator at

www.rheumaticsuppor t.org and ask for names of known A/P practitioners in your

area and keep your fingers crossed.

I had gotten a referral to an Infectious Disease Specialist from my Primary

Internist (after I 'fired' my rheumy), scheduled an appointment, sent him info

on A/P and later got a letter from this ID Doc advising he would NOT help me

pursue A/P therapy and cancelled the appointment! I didn't even get a chance to

talk to the guy. I suspect I was a victim of this particular hospital system's

unwritten rule, namely do not step on the toes of a fellow physician. I guess

that was my mistake in thinking this ID doc would help, given that he and my

ex-rheumy are a part of the same hospital system. Now it's back to square one.

Even my primary internist said " she would love to help me but could not because

infections were not her specialty. " Is that a cop out or what... She, too, is

part of the same hospital system.

I wish you good luck in your search for someone who will help. All the best.

Diane Springob

____________ _________ _________ __

From: Marj Winston <magenw7 (DOT) com>

rheumatic@grou ps.com

Sent: Sunday, February 8, 2009 3:26:46 PM

Subject: rheumatic Newbie interested in AP

Greetings,

I'm new to this Group and learning the usage of antibiotics on individuals with

autoimmune diseases.

The PA contact from the Road Back Foundation sent me the names of three doctors

that have used AP treatments. My concern is finding a medical professional that

practices AP that will take Medicaid.

I live in Upper Bucks County, S.E.PA and currently have been diagnosed with

fibromyalgia, rheumatoid arthritis, SLE Lupus, dermatomyositis, and Sjogren's

Syndrome.

I'm currently taking Immuran 200mg/day and 10mg prednisone/day. The doctors are

weaning me off the prednisone because of all the adverse reactions I'm having

from prednisone.

If anyone has any tips on what to do and not do please let me know.

Marj GentleDeer EagleSong Winston

Support the battered women's shelter on Pine Ridge Reservation!

http://FriendsofPin eRidgeReservatio n.org

Helping Pine Ridge Reservation, one donation at a time!

http://FriendsofPin eRidgeReservatio n.org

Tahca winyela ohanwaste, (Deer, female, person, gentle) GentleDeer

" Indian blood is like gold, no matter how thinly spun it shines just as bright. "

" Only if we stand together as one people can we hope to overcome all the

injustices suffered by our people. We have to learn to agree to disagree, and

stand as one people regardless of our personal differences. "

Strong Heart Woman

[Guest guest]

Thank you Diane

Marj GentleDeer EagleSong Winston

 

 Support the battered women's shelter on Pine Ridge Reservation!

http://FriendsofPineRidgeReservation.org

Helping Pine Ridge Reservation, one donation at a time!

http://FriendsofPineRidgeReservation.org

 

Tahca winyela ohanwaste, (Deer, female, person, gentle)  GentleDeer

                                                      

" Indian blood is like gold, no matter how thinly spun it shines just as bright. "

 

" Only if we stand together as one people can we hope to overcome all the

injustices suffered by our people.  We have to learn to agree to disagree, and

stand as one people regardless of our personal differences. "  

Strong Heart Woman

From: Diane Springob <springobd (DOT) com>

Subject: Re: rheumatic Newbie interested in AP

rheumatic@grou ps.com

Date: Monday, February 9, 2009, 12:56 PM

Hi, Marj, and welcome to the group! Wow, you seem to have been diagnosed with

every rheumatic illness. Is that even possible? If you haven't already done so,

review these websites: www.roadback. org, www.rheumatic. org ,

www.rheumaticsuppor t.org, and www.tarci.net. Read these carefully and learn as

much as you can about Dr. Brown's antibiotic protocol. Knowledge will help you

in your search for an MD who is willing to help. Contact a coordinator at

www.rheumaticsuppor t.org and ask for names of known A/P practitioners in your

area and keep your fingers crossed.

I had gotten a referral to an Infectious Disease Specialist from my Primary

Internist (after I 'fired' my rheumy), scheduled an appointment, sent him info

on A/P and later got a letter from this ID Doc advising he would NOT help me

pursue A/P therapy and cancelled the appointment! I didn't even get a chance to

talk to the guy. I suspect I was a victim of this particular hospital system's

unwritten rule, namely do not step on the toes of a fellow physician. I guess

that was my mistake in thinking this ID doc would help, given that he and my

ex-rheumy are a part of the same hospital system. Now it's back to square one.

Even my primary internist said " she would love to help me but could not because

infections were not her specialty. " Is that a cop out or what... She, too, is

part of the same hospital system.

I wish you good luck in your search for someone who will help. All the best.

Diane Springob

____________ _________ _________ __

From: Marj Winston <magenw7 (DOT) com>

rheumatic@grou ps.com

Sent: Sunday, February 8, 2009 3:26:46 PM

Subject: rheumatic Newbie interested in AP

Greetings,

I'm new to this Group and learning the usage of antibiotics on individuals with

autoimmune diseases.

The PA contact from the Road Back Foundation sent me the names of three doctors

that have used AP treatments. My concern is finding a medical professional that

practices AP that will take Medicaid.

I live in Upper Bucks County, S.E.PA and currently have been diagnosed with

fibromyalgia, rheumatoid arthritis, SLE Lupus, dermatomyositis, and Sjogren's

Syndrome.

I'm currently taking Immuran 200mg/day and 10mg prednisone/day. The doctors are

weaning me off the prednisone because of all the adverse reactions I'm having

from prednisone.

If anyone has any tips on what to do and not do please let me know.

Marj GentleDeer EagleSong Winston

Support the battered women's shelter on Pine Ridge Reservation!

http://FriendsofPin eRidgeReservatio n.org

Helping Pine Ridge Reservation, one donation at a time!

http://FriendsofPin eRidgeReservatio n.org

Tahca winyela ohanwaste, (Deer, female, person, gentle) GentleDeer

" Indian blood is like gold, no matter how thinly spun it shines just as bright. "

" Only if we stand together as one people can we hope to overcome all the

injustices suffered by our people. We have to learn to agree to disagree, and

stand as one people regardless of our personal differences. "

Strong Heart Woman

[Guest guest]

Here is an e-mail address for finding an AP doc:  apdoctors@...

Marj GentleDeer EagleSong Winston

 

 Support the battered women's shelter on Pine Ridge Reservation!

http://FriendsofPineRidgeReservation.org

Helping Pine Ridge Reservation, one donation at a time!

http://FriendsofPineRidgeReservation.org

 

Tahca winyela ohanwaste, (Deer, female, person, gentle)  GentleDeer

                                                      

" Indian blood is like gold, no matter how thinly spun it shines just as bright. "

 

" Only if we stand together as one people can we hope to overcome all the

injustices suffered by our people.  We have to learn to agree to disagree, and

stand as one people regardless of our personal differences. "  

Strong Heart Woman

From: Diane Springob <springobd (DOT) com>

Subject: Re: rheumatic Newbie interested in AP

rheumatic@grou ps.com

Date: Monday, February 9, 2009, 7:56 AM

Hi, Marj, and welcome to the group! Wow, you seem to have been diagnosed with

every rheumatic illness. Is that even possible? If you haven't already done so,

review these websites: www.roadback. org, www.rheumatic. org ,

www.rheumaticsuppor t..org, and www.tarci.net. Read these carefully and learn as

much as you can about Dr. Brown's antibiotic protocol. Knowledge will help you

in your search for an MD who is willing to help. Contact a coordinator at

www.rheumaticsuppor t.org and ask for names of known A/P practitioners in your

area and keep your fingers crossed.

I had gotten a referral to an Infectious Disease Specialist from my Primary

Internist (after I 'fired' my rheumy), scheduled an appointment, sent him info

on A/P and later got a letter from this ID Doc advising he would NOT help me

pursue A/P therapy and cancelled the appointment! I didn't even get a chance to

talk to the guy. I suspect I was a victim of this particular hospital system's

unwritten rule, namely do not step on the toes of a fellow physician. I guess

that was my mistake in thinking this ID doc would help, given that he and my

ex-rheumy are a part of the same hospital system. Now it's back to square one.

Even my primary internist said " she would love to help me but could not because

infections were not her specialty. " Is that a cop out or what... She, too, is

part of the same hospital system.

I wish you good luck in your search for someone who will help. All the best.

Diane Springob

____________ _________ _________ __

From: Marj Winston <magenw7 (DOT) com>

rheumatic@grou ps.com

Sent: Sunday, February 8, 2009 3:26:46 PM

Subject: rheumatic Newbie interested in AP

Greetings,

I'm new to this Group and learning the usage of antibiotics on individuals with

autoimmune diseases.

The PA contact from the Road Back Foundation sent me the names of three doctors

that have used AP treatments. My concern is finding a medical professional that

practices AP that will take Medicaid.

I live in Upper Bucks County, S.E.PA and currently have been diagnosed with

fibromyalgia, rheumatoid arthritis, SLE Lupus, dermatomyositis, and Sjogren's

Syndrome.

I'm currently taking Immuran 200mg/day and 10mg prednisone/day. The doctors are

weaning me off the prednisone because of all the adverse reactions I'm having

from prednisone.

If anyone has any tips on what to do and not do please let me know.

Marj GentleDeer EagleSong Winston

Support the battered women's shelter on Pine Ridge Reservation!

http://FriendsofPin eRidgeReservatio n.org

Helping Pine Ridge Reservation, one donation at a time!

http://FriendsofPin eRidgeReservatio n.org

Tahca winyela ohanwaste, (Deer, female, person, gentle) GentleDeer

" Indian blood is like gold, no matter how thinly spun it shines just as bright. "

" Only if we stand together as one people can we hope to overcome all the

injustices suffered by our people. We have to learn to agree to disagree, and

stand as one people regardless of our personal differences. "

Strong Heart Woman

[Guest guest]

I live in West Texas------

lubbock or i could go to abilene or amarillo

thanks for your reply

rheumatic Newbie interested in AP

Greetings,

I'm new to this Group and learning the usage of antibiotics on individuals

with autoimmune diseases.

The PA contact from the Road Back Foundation sent me the names of three

doctors that have used AP treatments. My concern is finding a medical

professional that practices AP that will take Medicaid.

I live in Upper Bucks County, S.E.PA and currently have been diagnosed with

fibromyalgia, rheumatoid arthritis, SLE Lupus, dermatomyositis, and Sjogren's

Syndrome.

I'm currently taking Immuran 200mg/day and 10mg prednisone/day. The doctors

are weaning me off the prednisone because of all the adverse reactions I'm

having from prednisone.

If anyone has any tips on what to do and not do please let me know.

Marj GentleDeer EagleSong Winston

Support the battered women's shelter on Pine Ridge Reservation!

http://FriendsofPin eRidgeReservatio n.org

Helping Pine Ridge Reservation, one donation at a time!

http://FriendsofPin eRidgeReservatio n.org

Tahca winyela ohanwaste, (Deer, female, person, gentle) GentleDeer

" Indian blood is like gold, no matter how thinly spun it shines just as

bright. "

" Only if we stand together as one people can we hope to overcome all the

injustices suffered by our people. We have to learn to agree to disagree, and

stand as one people regardless of our personal differences. "

Strong Heart Woman

[Guest guest]

Kathy,

  let me look up the addresses I have of AP doctors in TX. I will get back to

you on it in a day or so.

 

Eva

From: Diane Springob <springobd (DOT) com>

Subject: Re: rheumatic Newbie interested in AP

rheumatic@grou ps.com

Date: Monday, February 9, 2009, 7:56 AM

Hi, Marj, and welcome to the group! Wow, you seem to have been diagnosed with

every rheumatic illness. Is that even possible? If you haven't already done so,

review these websites: www.roadback. org, www.rheumatic. org ,

www.rheumaticsuppor t..org, and www.tarci.net. Read these carefully and learn as

much as you can about Dr. Brown's antibiotic protocol. Knowledge will help you

in your search for an MD who is willing to help. Contact a coordinator at

www.rheumaticsuppor t.org and ask for names of known A/P practitioners in your

area and keep your fingers crossed.

I had gotten a referral to an Infectious Disease Specialist from my Primary

Internist (after I 'fired' my rheumy), scheduled an appointment, sent him info

on A/P and later got a letter from this ID Doc advising he would NOT help me

pursue A/P therapy and cancelled the appointment! I didn't even get a chance to

talk to the guy. I suspect I was a victim of this particular hospital system's

unwritten rule, namely do not step on the toes of a fellow physician. I guess

that was my mistake in thinking this ID doc would help, given that he and my

ex-rheumy are a part of the same hospital system. Now it's back to square one.

Even my primary internist said " she would love to help me but could not because

infections were not her specialty. " Is that a cop out or what... She, too, is

part of the same hospital system.

I wish you good luck in your search for someone who will help. All the best.

Diane Springob

____________ _________ _________ __

From: Marj Winston <magenw7 (DOT) com>

rheumatic@grou ps.com

Sent: Sunday, February 8, 2009 3:26:46 PM

Subject: rheumatic Newbie interested in AP

Greetings,

I'm new to this Group and learning the usage of antibiotics on individuals with

autoimmune diseases.

The PA contact from the Road Back Foundation sent me the names of three doctors

that have used AP treatments. My concern is finding a medical professional that

practices AP that will take Medicaid.

I live in Upper Bucks County, S.E.PA and currently have been diagnosed with

fibromyalgia, rheumatoid arthritis, SLE Lupus, dermatomyositis, and Sjogren's

Syndrome.

I'm currently taking Immuran 200mg/day and 10mg prednisone/day. The doctors are

weaning me off the prednisone because of all the adverse reactions I'm having

from prednisone.

If anyone has any tips on what to do and not do please let me know.

Marj GentleDeer EagleSong Winston

Support the battered women's shelter on Pine Ridge Reservation!

http://FriendsofPin eRidgeReservatio n.org

Helping Pine Ridge Reservation, one donation at a time!

http://FriendsofPin eRidgeReservatio n.org

Tahca winyela ohanwaste, (Deer, female, person, gentle) GentleDeer

" Indian blood is like gold, no matter how thinly spun it shines just as bright. "

" Only if we stand together as one people can we hope to overcome all the

injustices suffered by our people. We have to learn to agree to disagree, and

stand as one people regardless of our personal differences. "

Strong Heart Woman

[Guest guest]

Hi Marj:

Thanks for the info but I've already emailed the Road Back Org and got some MD

names. Some of the docs provided no longer do A/P, some were quite a distance

away. However, I still keep them in mind as back-up if I cannot find a doc

nearby. Thanks again.

Diane Springob

________________________________

From: Marj Winston <magenw7@...>

rheumatic

Sent: Monday, February 9, 2009 6:15:37 PM

Subject: Re: rheumatic Newbie interested in AP

Hi Diane,

Here is the e-mail address that I wrote to: apdoctorsroadback (DOT) org

I hope this helps.

Marj GentleDeer EagleSong Winston

Support the battered women's shelter on Pine Ridge Reservation!

http://FriendsofPin eRidgeReservatio n.org

Helping Pine Ridge Reservation, one donation at a time!

http://FriendsofPin eRidgeReservatio n.org

Tahca winyela ohanwaste, (Deer, female, person, gentle) GentleDeer

" Indian blood is like gold, no matter how thinly spun it shines just as bright. "

" Only if we stand together as one people can we hope to overcome all the

injustices suffered by our people. We have to learn to agree to disagree, and

stand as one people regardless of our personal differences. "

Strong Heart Woman

From: Diane Springob <springobd (DOT) com>

Subject: Re: rheumatic Newbie interested in AP

rheumatic@grou ps.com

Date: Monday, February 9, 2009, 7:56 AM

Hi, Marj, and welcome to the group! Wow, you seem to have been diagnosed with

every rheumatic illness. Is that even possible? If you haven't already done so,

review these websites: www.roadback. org, www.rheumatic. org ,

www.rheumaticsuppor t..org, and www.tarci.net. Read these carefully and learn as

much as you can about Dr. Brown's antibiotic protocol. Knowledge will help you

in your search for an MD who is willing to help. Contact a coordinator at

www.rheumaticsuppor t.org and ask for names of known A/P practitioners in your

area and keep your fingers crossed.

I had gotten a referral to an Infectious Disease Specialist from my Primary

Internist (after I 'fired' my rheumy), scheduled an appointment, sent him info

on A/P and later got a letter from this ID Doc advising he would NOT help me

pursue A/P therapy and cancelled the appointment! I didn't even get a chance to

talk to the guy. I suspect I was a victim of this particular hospital system's

unwritten rule, namely do not step on the toes of a fellow physician. I guess

that was my mistake in thinking this ID doc would help, given that he and my

ex-rheumy are a part of the same hospital system. Now it's back to square one.

Even my primary internist said " she would love to help me but could not because

infections were not her specialty. " Is that a cop out or what... She, too, is

part of the same hospital system.

I wish you good luck in your search for someone who will help. All the best.

Diane Springob

____________ _________ _________ __

From: Marj Winston <magenw7 (DOT) com>

rheumatic@grou ps.com

Sent: Sunday, February 8, 2009 3:26:46 PM

Subject: rheumatic Newbie interested in AP

Greetings,

I'm new to this Group and learning the usage of antibiotics on individuals with

autoimmune diseases.

The PA contact from the Road Back Foundation sent me the names of three doctors

that have used AP treatments. My concern is finding a medical professional that

practices AP that will take Medicaid.

I live in Upper Bucks County, S.E.PA and currently have been diagnosed with

fibromyalgia, rheumatoid arthritis, SLE Lupus, dermatomyositis, and Sjogren's

Syndrome.

I'm currently taking Immuran 200mg/day and 10mg prednisone/day. The doctors are

weaning me off the prednisone because of all the adverse reactions I'm having

from prednisone.

If anyone has any tips on what to do and not do please let me know.

Marj GentleDeer EagleSong Winston

Support the battered women's shelter on Pine Ridge Reservation!

http://FriendsofPin eRidgeReservatio n.org

Helping Pine Ridge Reservation, one donation at a time!

http://FriendsofPin eRidgeReservatio n.org

Tahca winyela ohanwaste, (Deer, female, person, gentle) GentleDeer

" Indian blood is like gold, no matter how thinly spun it shines just as bright. "

" Only if we stand together as one people can we hope to overcome all the

injustices suffered by our people. We have to learn to agree to disagree, and

stand as one people regardless of our personal differences. "

Strong Heart Woman