Re: Finally Talked to the Rheumy

[Guest guest]

Yes, Amy!~~~We are giving you advice and you are not listening.  First,

fire the doctor and go find one that believes in the " Infectious Theory "  

Secondly, order the books whose titles you were given written by Dr. Brown &

Henry Scammell. Third, Go to Google or the search engine and make a copy

of the " FAQ' sheet on the " Antibiotic Protocol "   Read it all thoroughly. 

Educate yourself on the causes of arthritic diseases of an infectious origin.

 Fourth, get tested for bacteria and Fifth, get started on a long term, low

dose antibiotic of the Tetracycline family. Sixth!  Stop depending on any one

else to cure you.  You will have to take control and cure yourself with the

advice you already have been given on this board.  If you are just craving the

attention.  This is a negative way of doing it and you will end up horribly

disabled at best or dead.  Stop spinning yourself around and around, like a

dog chasing its' tail and

ignoring the answers you have been given.  You know what to do, now go and do

it.  Dolores 

From: Amy and Jay Willis <tknbychance26@...>

Subject: rheumatic Finally Talked to the Rheumy

dermatomyositissupport , OurMyositis ,

lupies , rheumatic

Date: Friday, June 18, 2010, 2:00 PM

 

So, finally I got to talk to my doctor and not the nurse. I told him about her

not telling me my lab results etc. He said he had a whole sheet of info he wrote

up for her to tell me... arrghh

Anyways, my labs showed a myositis antibody present so I have dermatomyositis.

He said my Lupus tests were not conclusive. The first one was positive, the

second one was negative etc etc.

Soo.....he said I am to stay on the increased dose of 40mg daily of prednisone

until next Wed. If I'm feeling improved then I can try and cut down to 20 mg

daily if not just to stay on the 40mg. Then I call him the following Monday and

let him know. He said if he can't get me down to 10mg a day in the next 2-3 mo

then he's looking at starting one of the following, methotrexate, Imuran or

Cellcept.

I am still going to make an appointment with my general doctor and talk to him

about all of this and see what his thoughts are.

Any info or advice?

Amy

www.freewebs.com/tknbychance

[Guest guest]

Amy, listen to Dolores please. She said it ALL!

Judy

In a message dated 6/18/2010 4:42:35 P.M. Eastern Daylight Time,

martysfolks2004@... writes:

Yes, Amy!~~~We are giving you advice and you are not listening. First,

fire the doctor and go find one that believes in the " Infectious Theory "

Secondly, order the books whose titles you were given written by Dr. Brown &

Henry Scammell. Third, Go to Google or the search engine and make a

copy of the " FAQ' sheet on the " Antibiotic Protocol " Read it all thoroughly.

Educate yourself on the causes of arthritic diseases of an infectious

origin. Fourth, get tested for bacteria and Fifth, get started on a long

term, low dose antibiotic of the Tetracycline family. Sixth! Stop depending

on any one else to cure you. You will have to take control and cure

yourself with the advice you already have been given on this board. If you are

just craving the attention. This is a negative way of doing it and you will

end up horribly disabled at best or dead. Stop spinning yourself around

and around, like a dog chasing its' tail and

ignoring the answers you have been given. You know what to do, now go and

do it. Dolores

From: Amy and Jay Willis <_tknbychance26@..._

(mailto:tknbychance26@...) >

Subject: rheumatic Finally Talked to the Rheumy

_dermatomyositissupport _

(mailto:dermatomyositissupport ) , _OurMyositis _

(mailto:OurMyositis ) , _lupies _

(mailto:lupies ) ,

_rheumatic _ (mailto:rheumatic )

Date: Friday, June 18, 2010, 2:00 PM

So, finally I got to talk to my doctor and not the nurse. I told him about

her not telling me my lab results etc. He said he had a whole sheet of

info he wrote up for her to tell me... arrghh

Anyways, my labs showed a myositis antibody present so I have

dermatomyositis. He said my Lupus tests were not conclusive. The first one was

positive, the second one was negative etc etc.

Soo.....he said I am to stay on the increased dose of 40mg daily of

prednisone until next Wed. If I'm feeling improved then I can try and cut down

to

20 mg daily if not just to stay on the 40mg. Then I call him the following

Monday and let him know. He said if he can't get me down to 10mg a day in

the next 2-3 mo then he's looking at starting one of the following,

methotrexate, Imuran or Cellcept.

I am still going to make an appointment with my general doctor and talk to

him about all of this and see what his thoughts are.

Any info or advice?

Amy

www.freewebs.com/tknbychance

[Non-text portions of this message have been removed]

[Non-text portions of this message have been removed]

[Guest guest]

Ditto! El

_____

From: rheumatic [mailto:rheumatic ] On Behalf

Of Judkeels@...

Sent: Friday, June 18, 2010 6:20 PM

rheumatic

Subject: Re: rheumatic Finally Talked to the Rheumy

Amy, listen to Dolores please. She said it ALL!

Judy

In a message dated 6/18/2010 4:42:35 P.M. Eastern Daylight Time,

martysfolks2004@... <mailto:martysfolks2004%40> writes:

Yes, Amy!~~~We are giving you advice and you are not listening. First,

fire the doctor and go find one that believes in the " Infectious Theory "

Secondly, order the books whose titles you were given written by Dr. Brown &

Henry Scammell. Third, Go to Google or the search engine and make a

copy of the " FAQ' sheet on the " Antibiotic Protocol " Read it all thoroughly.

Educate yourself on the causes of arthritic diseases of an infectious

origin. Fourth, get tested for bacteria and Fifth, get started on a long

term, low dose antibiotic of the Tetracycline family. Sixth! Stop depending

on any one else to cure you. You will have to take control and cure

yourself with the advice you already have been given on this board. If you

are

just craving the attention. This is a negative way of doing it and you will

end up horribly disabled at best or dead. Stop spinning yourself around

and around, like a dog chasing its' tail and

ignoring the answers you have been given. You know what to do, now go and

do it. Dolores

From: Amy and Jay Willis <_tknbychance26@...

<mailto:_tknbychance26%40> _

(mailto:tknbychance26@... <mailto:tknbychance26%40> ) >

Subject: rheumatic Finally Talked to the Rheumy

_dermatomyositissupport

<mailto:_dermatomyositissupport%40> _

(mailto:dermatomyositissupport

<mailto:dermatomyositissupport%40> ) ,

_OurMyositis <mailto:_OurMyositis%40> _

(mailto:OurMyositis <mailto:OurMyositis%40> )

, _lupies <mailto:_lupies%40> _

(mailto:lupies <mailto:lupies%40> ) ,

_rheumatic <mailto:_rheumatic%40> _

(mailto:rheumatic <mailto:rheumatic%40> )

Date: Friday, June 18, 2010, 2:00 PM

So, finally I got to talk to my doctor and not the nurse. I told him about

her not telling me my lab results etc. He said he had a whole sheet of

info he wrote up for her to tell me... arrghh

Anyways, my labs showed a myositis antibody present so I have

dermatomyositis. He said my Lupus tests were not conclusive. The first one

was

positive, the second one was negative etc etc.

Soo.....he said I am to stay on the increased dose of 40mg daily of

prednisone until next Wed. If I'm feeling improved then I can try and cut

down to

20 mg daily if not just to stay on the 40mg. Then I call him the following

Monday and let him know. He said if he can't get me down to 10mg a day in

the next 2-3 mo then he's looking at starting one of the following,

methotrexate, Imuran or Cellcept.

I am still going to make an appointment with my general doctor and talk to

him about all of this and see what his thoughts are.

Any info or advice?

Amy

www.freewebs.com/tknbychance

[Guest guest]

Dearest Amy,  We are not ganging up on you.  Most of us oldtimers know the

frustration you are going through and what we want is to spare you more pain &

frustration.  We have been through all the horrors of these diseases and the

healing stages are not much better, but well worth going through  Some of us

have reached that stage of remission when we sometimes forget just how sick we

were. That is where you want to go.  My saving grace, I think, was that I was

in such a mental fog, I didn't know how sick I was.  I was nearly dead and all

I wanted to do was sleep.  Others thought I had cancer in the final

stages. That is how bad I looked. Even a group of doctors told me I was in the

final stages of Pulmonary Fibrosis from Scleroderma.  I was offered the same

medications you were and I turned my back on the group of specialists, boarded a

plane and went to see Dr. Trentham who is an A/P specialist.  I started on

Minocin and that was January

2006.  The prior two years to that I had 4 heart surgeries, enlarged liver,

lithotripsy for stones in the kidneys x's 2, calcium stones popping out of my

skin (very painful).  Well, I won't go on.  The list is long. You get the

picture.  The doctor didn't call you back because he doesn't know what to do. 

To him you are a sqeaking door that needs to be shut down.  So, he is offering

you immune suppressant.  Trouble is they don't cure your disease, they just

keep you quiet for a spell, but you are worse off than before you started. 

These drugs only work for a short time, needing to be increased until you suffer

severe side effects and they eventually will kill you.  Calling the nurse

uneducated and complaining to us about your doctor and wanting to discuss what

he said with another doctor is all mechanisms you are using not to face the

inevitable.  You are wasting your time, the doctor's time and surely the nurse

doesn't want to be bothered

with you either.  In your conversations with us, I don't think you ever asked

anyone for a list of A/P docs.  What area do you live in?  Maybe there is a

doc in your area.  Find the nearest one and travel there on your hands & knees

if you have to.  At least get on the antibiotics to start with and any PC

(primary care) or (IFD)  (Infectious disease doctor) can give you scripts for

antibiotica.  First you need to be tested for your specific bacteria/virus. 

You may be what I call an infectious soup.  You will need to take antibiotics

as ordered.  Getting better won't be a picnic either.  Do not expect a quick

cure or instant feel good.  It will never happen.  Once you are on the

program, we will help you through it as we all have been there.  And we will be

there for you.  Name calling and blaming the docs will not do it for you. Nor

will pitting one doc against the other do it. You must take control, find the

doc, take the meds and

read all you can about your diseases.  Don't worry about the label they give

you.  You may get other labels along the way.  I ended up with 3 diseases, but

whose counting!  Who cares? You will also come up with symptoms you never

heard of and then they disappear only to get other symptoms.  Eventually, on

A/P all symptoms will go away.  These diseases are of an Infectious origin and

the antibiotics I took (ended up taking 6 or 7 different ones at different

times) did the trick.  Today, I am well and my self appointed job is to counsel

people like yourself to get better.  I can be harsh if I see that you are going

in the wrong direction.  I volunteer my time. I do not get paid for this.  I

am a nurse first, now retired, and a writer. I am trying to write a book about

life during the initial stage all the way to recovery and then what?  I do not

want you or anyone else to die or be crippled for life when there is help and

there is hope. 

So, please wipe your tears and go about the right path.  All of us are in this

to help people like you.  But you must also want to be helped.  Get your list

of docs and make that call now.  Dolores 

From: Amy and Jay Willis <_tknbychance26@...

<mailto:_tknbychance26%40> _

(mailto:tknbychance26@... <mailto:tknbychance26%40> ) >

Subject: rheumatic Finally Talked to the Rheumy

_dermatomyositissupport

<mailto:_dermatomyositissupport%40> _

(mailto:dermatomyositissupport

<mailto:dermatomyositissupport%40> ) ,

_OurMyositis <mailto:_OurMyositis%40> _

(mailto:OurMyositis <mailto:OurMyositis%40> )

, _lupies <mailto:_lupies%40> _

(mailto:lupies <mailto:lupies%40> ) ,

_rheumatic <mailto:_rheumatic%40> _

(mailto:rheumatic <mailto:rheumatic%40> )

Date: Friday, June 18, 2010, 2:00 PM

So, finally I got to talk to my doctor and not the nurse. I told him about

her not telling me my lab results etc. He said he had a whole sheet of

info he wrote up for her to tell me... arrghh

Anyways, my labs showed a myositis antibody present so I have

dermatomyositis. He said my Lupus tests were not conclusive. The first one

was

positive, the second one was negative etc etc.

Soo.....he said I am to stay on the increased dose of 40mg daily of

prednisone until next Wed. If I'm feeling improved then I can try and cut

down to

20 mg daily if not just to stay on the 40mg. Then I call him the following

Monday and let him know. He said if he can't get me down to 10mg a day in

the next 2-3 mo then he's looking at starting one of the following,

methotrexate, Imuran or Cellcept.

I am still going to make an appointment with my general doctor and talk to

him about all of this and see what his thoughts are.

Any info or advice?

Amy

www.freewebs.com/tknbychance

[Guest guest]

I came here for support........ NOT TO BE ACCUSED OF CRAVING THE ATTENTION!!! I

will be leaving this message board now as I do not need anymore NEGATIVITY from

ANYONE. HOW DARE YOU! Say things like this to someone just because they do not

believe the way you do!! HOW DARE YOU!!!

Amy

________________________________

From: mike rosner <martysfolks2004@...>

rheumatic

Sent: Fri, June 18, 2010 3:42:24 PM

Subject: Re: rheumatic Finally Talked to the Rheumy

Yes, Amy!~~~We are giving you advice and you are not listening. First, fire the

doctor and go find one that believes in the " Infectious Theory " Secondly, order

the books whose titles you were given written by Dr. Brown & Henry Scammell.

Third, Go to Google or the search engine and make a copy of the " FAQ'

sheet on the " Antibiotic Protocol " Read it all thoroughly. Educate yourself on

the causes of arthritic diseases of an infectious origin. Fourth, get tested

for bacteria and Fifth, get started on a long term, low dose antibiotic of the

Tetracycline family. Sixth! Stop depending on any one else to cure you. You

will have to take control and cure yourself with the advice you already have

been given on this board. If you are just craving the attention. This is a

negative way of doing it and you will end up horribly disabled at best or dead.

Stop spinning yourself around and around, like a dog chasing its' tail and

ignoring the answers you have been given. You know what to do, now go and do

it. Dolores

From: Amy and Jay Willis <tknbychance26@...>

Subject: rheumatic Finally Talked to the Rheumy

dermatomyositissupport , OurMyositis ,

lupies , rheumatic

Date: Friday, June 18, 2010, 2:00 PM

So, finally I got to talk to my doctor and not the nurse. I told him about her

not telling me my lab results etc. He said he had a whole sheet of info he wrote

up for her to tell me... arrghh

Anyways, my labs showed a myositis antibody present so I have dermatomyositis.

He said my Lupus tests were not conclusive. The first one was positive, the

second one was negative etc etc.

Soo.....he said I am to stay on the increased dose of 40mg daily of prednisone

until next Wed. If I'm feeling improved then I can try and cut down to 20 mg

daily if not just to stay on the 40mg. Then I call him the following Monday and

let him know. He said if he can't get me down to 10mg a day in the next 2-3 mo

then he's looking at starting one of the following, methotrexate, Imuran or

Cellcept.

I am still going to make an appointment with my general doctor and talk to him

about all of this and see what his thoughts are.

Any info or advice?

Amy

www.freewebs.com/tknbychance

[Guest guest]

Apparently you came to the wrong board.  Don't know what you are looking for. 

Most of us all believe that the antibiotic protocol has given us the key to

improved wellness.  You already knew that.  You keep asking for advice and

then venting, but you do not heed the advice, nor do you state that you do not

agree with the Infectious theory.  I am sorry you are disappointed and hope you

find the answer to your dilemma on another site.  We wish you the best. 

Should you ever decide to go on the Antibiotic Protocol, please feel free to

come back. That is the protocol most of us are familiar with and swear

by. Dolores

From: Amy and Jay Willis <tknbychance26@...>

Subject: rheumatic Finally Talked to the Rheumy

dermatomyositissupport , OurMyositis ,

lupies , rheumatic

Date: Friday, June 18, 2010, 2:00 PM

So, finally I got to talk to my doctor and not the nurse. I told him about her

not telling me my lab results etc. He said he had a whole sheet of info he wrote

up for her to tell me... arrghh

Anyways, my labs showed a myositis antibody present so I have dermatomyositis.

He said my Lupus tests were not conclusive. The first one was positive, the

second one was negative etc etc.

Soo.....he said I am to stay on the increased dose of 40mg daily of prednisone

until next Wed. If I'm feeling improved then I can try and cut down to 20 mg

daily if not just to stay on the 40mg. Then I call him the following Monday and

let him know. He said if he can't get me down to 10mg a day in the next 2-3 mo

then he's looking at starting one of the following, methotrexate, Imuran or

Cellcept.

I am still going to make an appointment with my general doctor and talk to him

about all of this and see what his thoughts are.

Any info or advice?

Amy

www.freewebs.com/tknbychance

[Guest guest]

Dolores, your response seemed extremely harsh to a newcomer who is scared

and lost and looking for help. Surely we can help people without being mean

and nasty.

Yes, you know much about all this, but it is still new and scary to Amy.

She would have profited more from some help given in a kind manner. Even if we

have to give it over and over, we can try to be patient and at least civil,

When people are in the fog of these diseases they are not always going to

see the wisdom of your fine words the first time or even the second or third

time because their brains are having trouble functioning.

Now Amy will not get our help. And I guess you will feel very heady with

all your wise words and knowledge.

I would prefer patience. Yes, you were a nurse. I was a teacher, and I know

sometimes knowledge is not processed immediately. Sometimes you need to be

kind and patient and explain it a little differently over and over. Amy

might have gotten it. Now she won't. Which is better?

[Guest guest]

Amy, I am so sorry for how you were treated.

[Guest guest]

Just wanting to support njteabag's thoughts. I'm new here and Dolores, I'm

glad you weren't talking to me then or I'd be wrecked. Just looking back

through archives, your last message to Amy read as somewhat bossy so you can

understand why she responded to other messages in the same thread but

skipped yours. I don't follow every email so am not entirely sure as to your

health status but previously I had assumed you're doing poorly physically

and haven't the energy to word emails in a less abrupt manner.

As a newcomer I'm interested in the experience you have to share, but do be

kind! In addition to what njteabag says, many people new to all of this

haven't yet had sufficiently bad experience with traditional treatment

methods as to feel there's any need (yet) to fight the uphill battle of

looking elsewhere for a solution.

Cheers,

On Sat, Jun 19, 2010 at 5:16 PM, <njteabag@...> wrote:

>

>

> Dolores, your response seemed extremely harsh to a newcomer who is scared

> and lost and looking for help. Surely we can help people without being mean

>

> and nasty.

>

> Yes, you know much about all this, but it is still new and scary to Amy.

> She would have profited more from some help given in a kind manner. Even if

> we

> have to give it over and over, we can try to be patient and at least civil,

>

> When people are in the fog of these diseases they are not always going to

> see the wisdom of your fine words the first time or even the second or

> third

> time because their brains are having trouble functioning.

>

> Now Amy will not get our help. And I guess you will feel very heady with

> all your wise words and knowledge.

>

> I would prefer patience. Yes, you were a nurse. I was a teacher, and I know

>

> sometimes knowledge is not processed immediately. Sometimes you need to be

> kind and patient and explain it a little differently over and over. Amy

> might have gotten it. Now she won't. Which is better?

>

>

>

[Guest guest]

I am sorry you feel that way.  She kept asking for help and everyone was being

ever so kind to her as I was also.  However, I saw the danger in going to this

doctor to get these toxic meds.  She was never interested at all in going on

the antibiotics.  She, in fact, said she did not agree.  She knew that on this

site we try to teach others about Dr. Brown's theory, as we talk about this

often.  What I got from reading her posts was the way she bashed her nurse, and

her doctor and using this board to vent.  I did not feel she was sincerely

wanting help, Yet she kept asking for it and she kept getting the same answers,

but just ignored  the suggestions.  I wanted to let her know how toxic those

meds were and I never accused her of anything.  I asked if,  and only if, she

needed attention, this was not in her best interest.  I never implied that

needing attention was a bad thing. Going about it by bashing the doctor & nurse

is not the way to

get positive attention.  And talking to another doctor about the first doctor

& nurse she kept bashing was not going to get her anywhere either.  The clue

that she was just playing us was that she never asked for a list of doctors or

even showed any interest whatsoever, about A/P.  She never asked one question

about it.   In all the posts she sent it was all about how uneducated the

nurse was.   Now you know we try to help everyone here.  And we are very

patient.  Did you read the next post I sent her?  It was very kind & I

explained everything very gently.  After that I received this angry post from

her.  Still, I answered her again and even invited her back should she decide

she wants to try the A/P.  I gave her all the tools.  Now it is up to her to

really want to get better or just merely feel better temporarily while she gets

worse.  To get such an outraged response tells me that I struck a nerve.  She

may be very sick, but she

does not want our help.  At least not now.  She justs wants our

attention. And being a former nurse has nothing to do with this.  In my 40

years of nursing, I never had a patient with scleroderma.  So, I knew nothing

about it as most medical professionals, even today, know very little about these

diseases.  It wasn't till I got sick myself, that I began to research this. 

And I, too suffered from brain fog, but I sincerely wanted to live. I went

through the same frustrations Amy is going through. I just didn't think that

Amy was taking this seriously enough and I wanted to drive home the infectious

theory.  I don't feel she is lost yet.  I'm hoping she will have time to mull

over everything that has been said. and with all the information she has been

given, she will eventually see her way.  I 'm hoping that maybe a gentle person

like yourself and others will follow her trail and win her back. Meanwhile, she

has had a chance to think

about it.  And I hope she thinks about it a lot.  For every scenario like

this, there is the good cop and the bad cop. So, be the good cop and get her

back.  But please no more bashing on this site. Let her know that bashing is

negative mechanism for evading facing the fact that one needs to be responsible

for one's self and their actions.  No one is going to cure her.  She chose the

doc, he did not choose her.  She does not have to act like the victim. She has

the power to find another doc..  Please let her know that she doesn't have a

clear diagnosis yet.  Myositis means inflammation  and every rheumatic

disease starts out with inflammation which is the clue that it is infectious.

Even if she isn't posting, I'm sure she will be reading to see if any comments

such as yours are coming in.  I hope she reads this post as well.  I

sincerely want her to get well.  It takes a team, not just me. So go after

her and get her back and maybe

this time, she will get it.  And thank you for posting in her defense. Maybe

you and others will get her back.  I hope it  serves as a wake up call for

her.  Someone had to jolt her.  I think I did a good thing.  At least I hope

so.  Read my post to her again and you will see, I was not unkind.  I was

firm, but not unkind.  Dolores    

From: njteabag@... <njteabag@...>

Subject: Re: rheumatic Finally Talked to the Rheumy

rheumatic

Date: Saturday, June 19, 2010, 3:16 AM

 

Dolores, your response seemed extremely harsh to a newcomer who is scared

and lost and looking for help. Surely we can help people without being mean

and nasty.

Yes, you know much about all this, but it is still new and scary to Amy.

She would have profited more from some help given in a kind manner. Even if we

have to give it over and over, we can try to be patient and at least civil,

When people are in the fog of these diseases they are not always going to

see the wisdom of your fine words the first time or even the second or third

time because their brains are having trouble functioning.

Now Amy will not get our help. And I guess you will feel very heady with

all your wise words and knowledge.

I would prefer patience. Yes, you were a nurse. I was a teacher, and I know

sometimes knowledge is not processed immediately. Sometimes you need to be

kind and patient and explain it a little differently over and over. Amy

might have gotten it. Now she won't. Which is better?

[Guest guest]

Hi , Please read all the e:mails I sent to Amy today and read them

carefully.  I was firm but not unkind.  I made an important point.  Helping

people is a joint effort and some people need to be jolted.  Most people don't. 

But when I read in all her e:mails how she bashed her doc & nurse, I saw that

she was projecting the responsiblity of helping herself onto the doctor and the

nurse.  She really wasn't asking for help.  Now, please read the answer I sent

to nitebag and you will see my response.  Her response to me was angry.  I think

I hit a nerve there.  She didn't answer me because she was playing the martyr

and victim.  She knew that I knew. Thank you also for coming to her defense.  It

may help her to digest the information she has been given.  And maybe you and

others can get her back.  I do not wish her any malice.  And sometimes when

someone is harming themselves, we have to push a point.  Please re read all the

posts. 

You will see I meant no harm.  Dolores

>

>

> Dolores, your response seemed extremely harsh to a newcomer who is scared

> and lost and looking for help. Surely we can help people without being mean

>

> and nasty.

>

> Yes, you know much about all this, but it is still new and scary to Amy.

> She would have profited more from some help given in a kind manner. Even if

> we

> have to give it over and over, we can try to be patient and at least civil,

>

> When people are in the fog of these diseases they are not always going to

> see the wisdom of your fine words the first time or even the second or

> third

> time because their brains are having trouble functioning.

>

> Now Amy will not get our help. And I guess you will feel very heady with

> all your wise words and knowledge.

>

> I would prefer patience. Yes, you were a nurse. I was a teacher, and I know

>

> sometimes knowledge is not processed immediately. Sometimes you need to be

> kind and patient and explain it a little differently over and over. Amy

> might have gotten it. Now she won't. Which is better?

>

>

>

[Guest guest]

Please remember, this group was formed for the sole purpose of providing

information to people interested in learning about the antibiotic therapy,

and providing support and encouragement for those traveling on the road back

to health using this therapy. That should be the motivating reason for

anyone joining this group.

Ethel

Re: rheumatic Finally Talked to the Rheumy

rheumatic

Date: Saturday, June 19, 2010, 3:16 AM

Dolores, your response seemed extremely harsh to a newcomer who is scared

and lost and looking for help. Surely we can help people without being mean

and nasty.

Yes, you know much about all this, but it is still new and scary to Amy.

She would have profited more from some help given in a kind manner. Even if

we

have to give it over and over, we can try to be patient and at least civil,

When people are in the fog of these diseases they are not always going to

see the wisdom of your fine words the first time or even the second or third

time because their brains are having trouble functioning.

Now Amy will not get our help. And I guess you will feel very heady with

all your wise words and knowledge.

I would prefer patience. Yes, you were a nurse. I was a teacher, and I know

sometimes knowledge is not processed immediately. Sometimes you need to be

kind and patient and explain it a little differently over and over. Amy

might have gotten it. Now she won't. Which is better?

[Guest guest]

I have not been following the thread with Amy, but the tone of certain comments

below made me concerned. I think we all need to remember the feeling of

uncertainty and fear and loss when trying to deal with rheumatic diseases.

There are no longer doctors monitoring this group as there were in the beginning

and when I joined in 1997, it was very much a support group where people felt

nurtured and were helped through others' experiences with lots of journal

articles and research that supported the AP. Aside from Ethel, most of us are

ordinary people trying to find help with our diseases and can only speak from

our personal experiences. Most people are coping with doctors who do not

believe in the AP. So that often leaves newcomers with a trusted doctor on one

side and complete strangers in an internet group on the other. It takes time to

build trust and a lot of time to overcome fear. I think as a group, we need to

be compassionate, understand and remember that dilemma, and respect a person's

wish to disagree or to decide not to follow the advice given by a stranger.

This is just my opinion.

rheumatic Finally Talked to the Rheumy

dermatomyositissupport , OurMyositis ,

lupies , rheumatic

Date: Friday, June 18, 2010, 2:00 PM

So, finally I got to talk to my doctor and not the nurse. I told him about her

not telling me my lab results etc. He said he had a whole sheet of info he wrote

up for her to tell me... arrghh

Anyways, my labs showed a myositis antibody present so I have dermatomyositis.

He said my Lupus tests were not conclusive. The first one was positive, the

second one was negative etc etc.

Soo.....he said I am to stay on the increased dose of 40mg daily of prednisone

until next Wed. If I'm feeling improved then I can try and cut down to 20 mg

daily if not just to stay on the 40mg. Then I call him the following Monday and

let him know. He said if he can't get me down to 10mg a day in the next 2-3 mo

then he's looking at starting one of the following, methotrexate, Imuran or

Cellcept.

I am still going to make an appointment with my general doctor and talk to him

about all of this and see what his thoughts are.

Any info or advice?

Amy

www.freewebs.com/tknbychance

[Guest guest]

I would like to know where you were, and what you emails wrote to

support Amy.

njteabag@... wrote:

>

>

> Amy, I am so sorry for how you were treated.

>

>

[Guest guest]

So, what I think you are saying is that she was not a turning out to be

not a good fit. Because she was not at all interested in antibiotic

therapy, and none of her emails related to the group purpose.

Especially her last email.

Possibly related, ALL of her emails were cross-posted to various other

unrelated groups. Including various children-related groups, an

equipment group (??) and a panhypopituitarism group, suggesting she has

she has hormonal issues as well.

Ethel Snooks wrote:

>

>

>

> Please remember, this group was formed for the sole purpose of providing

> information to people interested in learning about the antibiotic

> therapy,

> and providing support and encouragement for those traveling on the

> road back

> to health using this therapy. That should be the motivating reason for

> anyone joining this group.

>

> Ethel

>

> Re: rheumatic Finally Talked to the Rheumy

> rheumatic <mailto:rheumatic%40>

> Date: Saturday, June 19, 2010, 3:16 AM

>

> Dolores, your response seemed extremely harsh to a newcomer who is scared

> and lost and looking for help. Surely we can help people without being

> mean

> and nasty.

>

> Yes, you know much about all this, but it is still new and scary to Amy.

> She would have profited more from some help given in a kind manner.

> Even if

> we

> have to give it over and over, we can try to be patient and at least

> civil,

> When people are in the fog of these diseases they are not always going to

> see the wisdom of your fine words the first time or even the second or

> third

> time because their brains are having trouble functioning.

>

> Now Amy will not get our help. And I guess you will feel very heady with

> all your wise words and knowledge.

>

> I would prefer patience. Yes, you were a nurse. I was a teacher, and I

> know

> sometimes knowledge is not processed immediately. Sometimes you need to be

> kind and patient and explain it a little differently over and over. Amy

> might have gotten it. Now she won't. Which is better?

>

>

[Guest guest]

Since you are new, I will tell you. Dolores is one of the few that

steps up to the plate to newcomers. Yes there are a few others, but

mostly people don't take the time to help new people. Dolores is

extremely kind and patient, and was so for the first 10 or so emails to

Amy. Perhaps it would have been kinder to ignore her, as did most of

the people who are now complaining.

I don't post often myself. I am a fan of Dolores because of the time

and kindness she gives to others. She is actually consistently that way.

I am not on AB, as I found other solutions, but I do believe in it.

Amy (another one)

Appleton wrote:

> Just wanting to support njteabag's thoughts. I'm new here and Dolores, I'm

> glad you weren't talking to me then or I'd be wrecked. Just looking back

> through archives, your last message to Amy read as somewhat bossy so you can

> understand why she responded to other messages in the same thread but

> skipped yours. I don't follow every email so am not entirely sure as to your

> health status but previously I had assumed you're doing poorly physically

> and haven't the energy to word emails in a less abrupt manner.

>

> As a newcomer I'm interested in the experience you have to share, but do be

> kind! In addition to what njteabag says, many people new to all of this

> haven't yet had sufficiently bad experience with traditional treatment

> methods as to feel there's any need (yet) to fight the uphill battle of

> looking elsewhere for a solution.

>

> Cheers,

>

>

>

> On Sat, Jun 19, 2010 at 5:16 PM, <njteabag@...> wrote:

>

>

>> Dolores, your response seemed extremely harsh to a newcomer who is scared

>> and lost and looking for help. Surely we can help people without being mean

>>

>> and nasty.

>>

>> Yes, you know much about all this, but it is still new and scary to Amy.

>> She would have profited more from some help given in a kind manner. Even if

>> we

>> have to give it over and over, we can try to be patient and at least civil,

>>

>> When people are in the fog of these diseases they are not always going to

>> see the wisdom of your fine words the first time or even the second or

>> third

>> time because their brains are having trouble functioning.

>>

>> Now Amy will not get our help. And I guess you will feel very heady with

>> all your wise words and knowledge.

>>

>> I would prefer patience. Yes, you were a nurse. I was a teacher, and I know

>>

>> sometimes knowledge is not processed immediately. Sometimes you need to be

>> kind and patient and explain it a little differently over and over. Amy

>> might have gotten it. Now she won't. Which is better?

>>

>>

>>

[Guest guest]

Hello

I think Amy is over reacting. Dolores didn't mean to insult or hurt Amy's

feelings. I remember there was a lady from Australia who kept posting emails

regarding her health condition and always refused to do AP.

It was really annoying to read her posts. I don't understand these people, they

have tried many toxic medications and are afraid of taking antibiotic and then

keep arguing about dangers of antibiotic as if somebody has forced on them.

All of us here have health problems, struggling with consequences of the our ill

health.we are here to learn from each other but some people are not hear to

learn.

I strongly suggest you to read " The four agreements " by Don Ruiz. It is

a great and simple book about reaching personal liberation. It is a must book

for everyone regardless of being healthy or not.

soheila

[Guest guest]

Hello all,  This is Dolores.  I read all the posts, pro & con re: my post to

Amy.  What I am excited about is that these posts have finally stirred up

conversations about Dr. Brown's theory.  The ones who think it is okay to play

the victim and not genuinely seek help have painted a picture of a frightened

Amy.  Amy is not frightened enough about her health or she would have at least

inquired more about this life-saving therapy. And thank me for laying out the

steps and the process.  All of you who feel so sorry for Amy, how many posts

did you send her with the life-saving information?  Did you all think that by

soothing her ego about her villanous doctor and nurse would be the way to help

her. Would you  rather see her suffer worse than what is happening already? 

Are you really doing her justice?  Amy's angry post to me was way over blown. 

Why because, I blew the cover off her real motive and that was to get as many

people to pity her and

see what a poor helpless victim of this cruel doctor and his stupid nurse she

was.  Wallowing in self pity and dragging it on and on will not get anyone

well. Apparently she was craving attention from this doctor and nurse she

sought out and they weren't givng it to her. No one forced her to go to this

doctor.  The rest of us who had to face a myriad of doctors did the normal

thing and that is to just go find another doctor and establish a good

relationship with him/her. Why waste precious time accusing the doctor, nurse,

me, etc.   I pointed out the truth to her that bashing this doc & nurse would

not be the positive way to get the attention she needed. She drew negative

attention to herself in that they ignored her and let her stew.   Now, re-read

my post and see if I said anything that should have upset her.  I did not

accuse her of anything. She turned my good intentions into an attack, so she

can further go on with her self pity

party. Amy should be afraid.  She should be shaking.  She was thrown a life

saver, but would rather drown in her own self pity. Anyway, I feel great that

I sent the post that was the catalyst for starting this entire series of

posts. Amy, you just needed one more person to blame. I feel sorry for you. 

You need to liberate yourself from that victim mentality and really do something

positive about your health.  To those who really understood my intentions,

thank you for your support.  For those who think I am the villan, sorry you

don't get it. Check out your own motives for being on board.  We are all

adults and there is no room for childish outbursts. Information is essential.

That is the reason for the board.  We are not here to soothe egos. What you do

with the information you've been given is up to you.  All we can do is serve

the meal.  Whether you eat it or not is up to you.  But don't take it out on

the cook. I will go on with

my work of giving people the information that saved my life.  Most people who

are genuinely seeking help are grateful. Others need help of a different

kind.  That is not my department.  Dolores      

From: soheila A <soadl80@...>

Subject: Re: rheumatic Finally Talked to the Rheumy

rheumatic

Date: Sunday, June 20, 2010, 12:42 AM

 

Hello

I think Amy is over reacting. Dolores didn't mean to insult or hurt Amy's

feelings. I remember there was a lady from Australia who kept posting emails

regarding her health condition and always refused to do AP.

It was really annoying to read her posts. I don't understand these people, they

have tried many toxic medications and are afraid of taking antibiotic and then

keep arguing about dangers of antibiotic as if somebody has forced on them.

All of us here have health problems, struggling with consequences of the our ill

health.we are here to learn from each other but some people are not hear to

learn.

I strongly suggest you to read " The four agreements " by Don Ruiz. It is

a great and simple book about reaching personal liberation. It is a must book

for everyone regardless of being healthy or not.

soheila

[Guest guest]

Delores, consider that those of us who didn't offer anything in the way of

advice to Amy didn't actually have anything to offer. I understand you're

supposed to be quite experienced and knowledgeable in this area; not all of

us on the list have this experience or knowledge.

I don't think any of us are saying your intentions weren't to help. The

issue, if we assume you were, is whether the delivery helped in achieving

this, and your claiming that it seems to have helped her doesn't much stand

up when she left entirely.

Re accusations of attention seeking: I'm quite new to this condition and

from my minimal reading I understand already that a lot of people suffering

from invisible pains and disabilities like arthritis get ignored and/or

accused of pretending by medical staff and others who can't see the pain

they're in or can't do anything about it. With the nursing experience and

medical history I understand you to have, I can't imagine how this wouldn't

cross your mind when dealing with people suffering with such a condition.

The purpose of the board may not be to soothe egos but sharing information

and being decent to others aren't, or shouldn't be, mutually exclusive

activities.

I'm not sure what's to be proud of about what seems to be a divisive thread

not actually about AP at all. I won't be continuing to read it as such a

derail is not why I'm here. I look forward to things returning to the

informative and generous discussion that comprises this list ordinarily.

On Sun, Jun 20, 2010 at 7:42 PM, mike rosner <martysfolks2004@...>wrote:

>

>

> Hello all, This is Dolores. I read all the posts, pro & con re: my post

> to Amy. What I am excited about is that these posts have finally stirred up

> conversations about Dr. Brown's theory. The ones who think it is okay to

> play the victim and not genuinely seek help have painted a picture of a

> frightened Amy. Amy is not frightened enough about her health or she would

> have at least inquired more about this life-saving therapy. And thank me for

> laying out the steps and the process. All of you who feel so sorry for Amy,

> how many posts did you send her with the life-saving information? Did you

> all think that by soothing her ego about her villanous doctor and nurse

> would be the way to help her. Would you rather see her suffer worse than

> what is happening already? Are you really doing her justice? Amy's angry

> post to me was way over blown. Why because, I blew the cover off her real

> motive and that was to get as many people to pity her and

> see what a poor helpless victim of this cruel doctor and his stupid nurse

> she was. Wallowing in self pity and dragging it on and on will not get

> anyone well. Apparently she was craving attention from this doctor and nurse

> she sought out and they weren't givng it to her. No one forced her to go to

> this doctor. The rest of us who had to face a myriad of doctors did the

> normal thing and that is to just go find another doctor and establish a good

> relationship with him/her. Why waste precious time accusing the doctor,

> nurse, me, etc. I pointed out the truth to her that bashing this doc &

> nurse would not be the positive way to get the attention she needed. She

> drew negative attention to herself in that they ignored her and let her

> stew. Now, re-read my post and see if I said anything that should

> have upset her. I did not accuse her of anything. She turned my good

> intentions into an attack, so she can further go on with her self pity

> party. Amy should be afraid. She should be shaking. She was thrown a life

> saver, but would rather drown in her own self pity. Anyway, I feel great

> that I sent the post that was the catalyst for starting this entire series

> of posts. Amy, you just needed one more person to blame. I feel sorry for

> you. You need to liberate yourself from that victim mentality and really do

> something positive about your health. To those who really understood my

> intentions, thank you for your support. For those who think I am the

> villan, sorry you don't get it. Check out your own motives for being on

> board. We are all adults and there is no room for childish

> outbursts. Information is essential. That is the reason for the board. We

> are not here to soothe egos. What you do with the information you've been

> given is up to you. All we can do is serve the meal. Whether you eat it or

> not is up to you. But don't take it out on the cook. I will go on with

> my work of giving people the information that saved my life. Most people

> who are genuinely seeking help are grateful. Others need help of a different

> kind. That is not my department. Dolores

>

>

>

> From: soheila A <soadl80@... <soadl80%40>>

>

> Subject: Re: rheumatic Finally Talked to the Rheumy

> rheumatic <rheumatic%40>

> Date: Sunday, June 20, 2010, 12:42 AM

>

>

>

>

> Hello

>

> I think Amy is over reacting. Dolores didn't mean to insult or hurt Amy's

> feelings. I remember there was a lady from Australia who kept posting emails

> regarding her health condition and always refused to do AP.

> It was really annoying to read her posts. I don't understand these people,

> they have tried many toxic medications and are afraid of taking antibiotic

> and then keep arguing about dangers of antibiotic as if somebody has forced

> on them.

> All of us here have health problems, struggling with consequences of the

> our ill health.we are here to learn from each other but some people are not

> hear to learn.

> I strongly suggest you to read " The four agreements " by Don Ruiz.

> It is a great and simple book about reaching personal liberation. It is a

> must book for everyone regardless of being healthy or not.

> soheila

>

>

[Guest guest]

Hello .  It seems to me that you seem to think you can read my mind. 

Amy's action to leave was of her own choice.  I did not send her off.  She is

responsible for her own actions, not I.  You assume to know that I have so much

knowledge and experience in this area.  How do you come to that conclusion in

your mind?  You know nothing about my knowledge and experience.  As far as

attention seeking, she was craving it from her doctor and nurse and they were

ignoring her.  She stated so over and over again.   I never accused her of it.

She assumed that I accused her of wanting attention.  I never accused her.  Read

my post to her carefully.  She was the one needing her doc & nurse to contact

her. Her violent redponse to me was overreaction. and quite immature.  She  was

asking for their attention and getting frustrated that she wasn't getting it   I

never said that pains & disabilities of arthritis are invisible. Where do you

come

to assume this.  My nursing experience had nothing to do with arthritis. I had

a different specialty. Yes, when my pains & disabilities came, I was ignored by

the medical staff.  But I didn't wallow in it. I sought help from a specialist

in A/P.   That is the positive thing to do.  How do you assume that it didn't

cross my mind when I lived with pain for years.  You now accuse me of being

indecent to her.  In what way was I ever indecent?  My, you toss out words of

accusation and assume so much.  I didn't start the divisive thread. Information

is exactly what I gave her and nothing more.  And if you didn't have anything to

give her and remained silent, so be it.  But, for those accusining me, well

there is a saying, if you don't like the way the job is being done, do it

yourself.  Who is being the devisive  when you are accusatory and assuming so

much. Assuming, makes an ASS out of U & ME This is defintiely all about A/P. and

it should

have stayed that way.  I gave her 6 or 7 steps on what to do.  And that was

because I have lived it. You are way off track about me, but entittled to your

opinion which I didn't ask for.   I gave you no cause to attack me personally,

or professionally. Who is the indecent one here?  You are totally out of

line. Dolores  

>

> From: soheila A <soadl80@... <soadl80%40>>

>

> Subject: Re: rheumatic Finally Talked to the Rheumy

> rheumatic <rheumatic%40>

> Date: Sunday, June 20, 2010, 12:42 AM

>

>

>

>

> Hello

>

> I think Amy is over reacting. Dolores didn't mean to insult or hurt Amy's

> feelings. I remember there was a lady from Australia who kept posting emails

> regarding her health condition and always refused to do AP.

> It was really annoying to read her posts. I don't understand these people,

> they have tried many toxic medications and are afraid of taking antibiotic

> and then keep arguing about dangers of antibiotic as if somebody has forced

> on them.

> All of us here have health problems, struggling with consequences of the

> our ill health.we are here to learn from each other but some people are not

> hear to learn.

> I strongly suggest you to read " The four agreements " by Don Ruiz.

> It is a great and simple book about reaching personal liberation. It is a

> must book for everyone regardless of being healthy or not.

> soheila

>

>

[Guest guest]

Every reader,

I have read enough about Amy and Dolores. Can we put all this behind us and get

back to the helpful blog this site is. I look forward to reading about the

successes of A/P.

Can we get back

Re: rheumatic Finally Talked to the Rheumy

> rheumatic <rheumatic%40>

> Date: Sunday, June 20, 2010, 12:42 AM

>

>

>

>

> Hello

>

> I think Amy is over reacting. Dolores didn't mean to insult or hurt Amy's

> feelings. I remember there was a lady from Australia who kept posting emails

> regarding her health condition and always refused to do AP.

> It was really annoying to read her posts. I don't understand these people,

> they have tried many toxic medications and are afraid of taking antibiotic

> and then keep arguing about dangers of antibiotic as if somebody has forced

> on them.

> All of us here have health problems, struggling with consequences of the

> our ill health.we are here to learn from each other but some people are not

> hear to learn.

> I strongly suggest you to read " The four agreements " by Don Ruiz.

> It is a great and simple book about reaching personal liberation. It is a

> must book for everyone regardless of being healthy or not.

> soheila

>

>

[Guest guest]

Hi,

I agree with Mike....let's end this here. Everyone who wanted to speak has

had his/her turn and let's get on to the positive positions of what our

group stands for. You have all helped me in so many ways over the passed 11

yrs since I was diagnosed with RA, and I know others feel the same way. Let's

not ruin it. Every once in awhile we hit on a sore subject where we feel

we must voice our opinion b/c it's so controversial. Then we must move on.

I happen to agree with Dolores just b/c at a certain point throughout an

ongoing issue one needs to get a wake up call.

that's it from me!

thanks,

Judy

In a message dated 6/20/2010 8:15:29 A.M. Eastern Daylight Time,

drleeper@... writes:

Every reader,

I have read enough about Amy and Dolores. Can we put all this behind us

and get back to the helpful blog this site is. I look forward to reading

about the successes of A/P.

Can we get back

Re: rheumatic Finally Talked to the Rheumy

> _rheumatic _ (mailto:rheumatic )

<rheumatic%40>

> Date: Sunday, June 20, 2010, 12:42 AM

>

>

>

>

> Hello

>

> I think Amy is over reacting. Dolores didn't mean to insult or hurt

Amy's

> feelings. I remember there was a lady from Australia who kept posting

emails

> regarding her health condition and always refused to do AP.

> It was really annoying to read her posts. I don't understand these

people,

> they have tried many toxic medications and are afraid of taking

antibiotic

> and then keep arguing about dangers of antibiotic as if somebody has

forced

> on them.

> All of us here have health problems, struggling with consequences of the

> our ill health.we are here to learn from each other but some people are

not

> hear to learn.

> I strongly suggest you to read " The four agreements " by Don

Ruiz.

> It is a great and simple book about reaching personal liberation. It is

a

> must book for everyone regardless of being healthy or not.

> soheila

>

> [Non-text portions of this message have been removed]

>

>

>

[Non-text portions of this message have been removed]

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

To unsubscribe, email: _rheumatic-unsubscribe@..._

(mailto:rheumatic-unsubscribe@...) ! Groups Links

[Guest guest]

Dolores,

All I can say to all of your posts is AMEN.

Carol_DM

[Guest guest]

Hello Dolores,

you have been a wonderful help to everybody on this board that needed help. I

think you are a very good human being. 

Do not become defensive about this incident with Amy. You had the best

intentions in trying to help her like you helped many others. The only problem

was with the delivery. Some people bruise easier than others, some people are

confused and until they get clear, are unable to hear a message.

Again, I do not think anybody on this board has any doubts about what your

intentions were.

I do not think this is about believing or not in the abx protocol.

and, if Amy will ponder about it, do her homework reading the abx protocol she

will come back and thank you for your good intentions

Now we should all go back to our world: helping each other the best way we

can.

Ana

________________________________

From: mike rosner <martysfolks2004@...>

rheumatic

Sent: Sun, June 20, 2010 2:42:52 AM

Subject: Re: rheumatic Finally Talked to the Rheumy

 

Hello all,  This is Dolores.  I read all the posts, pro & con re: my post to

Amy.  What I am excited about is that these posts have finally stirred up

conversations about Dr. Brown's theory.  The ones who think it is okay to play

the victim and not genuinely seek help have painted a picture of a frightened

Amy.  Amy is not frightened enough about her health or she would have at least

inquired more about this life-saving therapy. And thank me for laying out the

steps and the process.  All of you who feel so sorry for Amy, how many posts

did you send her with the life-saving information?  Did you all think that by

soothing her ego about her villanous doctor and nurse would be the way to help

her. Would you  rather see her suffer worse than what is happening already? 

Are you really doing her justice?  Amy's angry post to me was way over blown. 

Why because, I blew the cover off her real motive and that was to get as many

people to pity her and

see what a poor helpless victim of this cruel doctor and his stupid nurse she

was.  Wallowing in self pity and dragging it on and on will not get anyone

well. Apparently she was craving attention from this doctor and nurse she

sought out and they weren't givng it to her. No one forced her to go to this

doctor.  The rest of us who had to face a myriad of doctors did the normal

thing and that is to just go find another doctor and establish a good

relationship with him/her. Why waste precious time accusing the doctor, nurse,

me, etc.   I pointed out the truth to her that bashing this doc & nurse would

not be the positive way to get the attention she needed. She drew negative

attention to herself in that they ignored her and let her stew.   Now, re-read

my post and see if I said anything that should have upset her.  I did not

accuse her of anything. She turned my good intentions into an attack, so she

can further go on with her self pity

party. Amy should be afraid.  She should be shaking.  She was thrown a life

saver, but would rather drown in her own self pity. Anyway, I feel great that

I sent the post that was the catalyst for starting this entire series of

posts. Amy, you just needed one more person to blame. I feel sorry for you. 

You need to liberate yourself from that victim mentality and really do something

positive about your health.  To those who really understood my intentions,

thank you for your support.  For those who think I am the villan, sorry you

don't get it. Check out your own motives for being on board.  We are all

adults and there is no room for childish outbursts. Information is essential.

That is the reason for the board.  We are not here to soothe egos. What you do

with the information you've been given is up to you.  All we can do is serve

the meal.  Whether you eat it or not is up to you.  But don't take it out on

the cook. I will go on with

my work of giving people the information that saved my life.  Most people who

are genuinely seeking help are grateful. Others need help of a different

kind.  That is not my department.  Dolores      

From: soheila A <soadl80@...>

Subject: Re: rheumatic Finally Talked to the Rheumy

rheumatic

Date: Sunday, June 20, 2010, 12:42 AM

 

Hello

I think Amy is over reacting. Dolores didn't mean to insult or hurt Amy's

feelings. I remember there was a lady from Australia who kept posting emails

regarding her health condition and always refused to do AP.

It was really annoying to read her posts. I don't understand these people, they

have tried many toxic medications and are afraid of taking antibiotic and then

keep arguing about dangers of antibiotic as if somebody has forced on them.

All of us here have health problems, struggling with consequences of the our ill

health.we are here to learn from each other but some people are not hear to

learn.

I strongly suggest you to read " The four agreements " by Don Ruiz. It is

a great and simple book about reaching personal liberation. It is a must book

for everyone regardless of being healthy or not.

soheila

[Guest guest]

Delores, I just read your email and want to repond to you. WAYYYY back when I

first was diagnosed with SD and given a three to five year outlook which wa

certainly not for the vain (definitely, not scleroderma) and not for the weak.

I looked around and sought out doctors who always treated their patients with SD

the same - thoses drugs which will kill you if the SD does not. Why, because it

is a good ole boy network and easier just to go along with the rest. Not

putting doctors down because there are both good, bad, bloody bad and

exceptional - just like the rest of us in the population. i searched and

searched and finally located a woman all the way across the United States from

me whom I heard of

who had not only survived scleroderma but gone on to being actually declared

CURED.. I finally was able to reach her by phone and she told me that she would

mentor me, that I most certainly could get well, but that if I did not intend to

do EXACTLY everything she instructed me to do, not to bother calling her again.

This was a nurse. She said, if i didn't plan to follow her exactly, there were

more waiting in line who would and she was mentoring all the time and could not

be bothered with someone who would not listen. At that time, I thought this was

the RUDEST person I had ever talked to in my life - my short life which I was

told was ending. I agreed to follow her exactly and developed a wonderful

relationship with her, a wonderful HEALING relationship with her and through the

years, I came to understand her comments. Now that I am pretty dog gone well,

word is out and so often, I miss a meal because of the phone. I have attempted

to mentor two women who would not do one single thing I asked and I have watched

them die. This is painful and in my opinion, a complete WASTE which was

unnecessary. In illness, we don't have time for egos to get in the way. The

clock in ticking. . A bit later, I found Ethel who was my second mentor and I

have fought HARD, read everything recommended to me, tried everything suggested

to me by those who have gone before me, and i lived to tell about it. For a

while, I reached that tiredness that I am sure the oldies here reached. That

phone ringing incessantly by those in fear but unwilling, and I am not saying

unable, to make even the smallest change - like DIET. I have heard so many

times, " Oh, I could NEVER do that! " and I think to myself, " how sad, because

this is testimony to how you value or do not value you life. I would have

danced with the devil himself - and at times, thought that about my mentor - in

order to get well. I wanted to live. Period, This was not polite friendship.

This was not a social thing. This was survival. And Delores is taking so much

time to show you the way. You may not like what she says. You may not like the

way she says it. She is throwing you a life presever so that you can save

yourself. Nobody else can do this for you. I love each one of you here but

keep your perspective here. I cannot be on the phone 24/7 with people who call

me six, seven times and ask the same questions but never follow up on one

suggestion. God bless Delores and the rest of the caregivers here who have

stepped up to the plate. Love in WELLNESS to all of you, Fain

Re: rheumatic Finally Talked to the Rheumy

rheumatic

Date: Sunday, June 20, 2010, 12:42 AM

Hello

I think Amy is over reacting. Dolores didn't mean to insult or hurt Amy's

feelings. I remember there was a lady from Australia who kept posting emails

regarding her health condition and always refused to do AP.

It was really annoying to read her posts. I don't understand these people, they

have tried many toxic medications and are afraid of taking antibiotic and then

keep arguing about dangers of antibiotic as if somebody has forced on them.

All of us here have health problems, struggling with consequences of the our ill

health.we are here to learn from each other but some people are not hear to

learn.

I strongly suggest you to read " The four agreements " by Don Ruiz. It is

a great and simple book about reaching personal liberation. It is a must book

for everyone regardless of being healthy or not.

soheila