Re: remember my freakout...Rheumy Lupus etc.

[Guest guest]

Somewhere in " The Arthritis Breakthrough " it describes a colleague of Dr.

Brown's (in his earlier years) telling him to imagine the world from a

microbe's point of view. And Dr. Brown said that if he were a microbe he'd

have to find somewhere in the body that would support his life. Apparently

mycoplasma like it in the joints. Given that point of view, it's easy to

imagine them 'running' from the antibiotic to hide anywhere that they think

they are safe. And then having to move on as the antibiotic does its thing.

Chris.

Dear Donna,

Glad your lupus test was negative!

I've been reeling from a conversation I had with the RD's nurse yesterday.

This is the doctor who prescribed the minocycline. I asked to have my

baseline ex-rays and labs repeated. He sent a message back that he won't

unless there is some big change in my condition.

Then I got another call saying that I could go to one of the other RD's at

Kaiser. This doctor is getting cold feet. I also asked about pain

medications because I think he should handle that rather than my primary

care doctor. Well, the way that request was responded to leads me to

believe that if I were to go for methotrexate I could get pain meds but

since I don't....

I'm going to fade out of that doctor's memory and just keep filling my

minocycline prescriptions.

In the meantime my inflammation is moving around. I got my shoulder back

yesterday and now it's my left wrist and the ring fingers on both hands.

Last week it was my feet and ankles, and then one foot. It's always

something--but it is never as bad as before changing my diet and starting

the antibiotic protocol.

I think I've got the critters on the run. It is of interest to me that the

pain moves to places where I had trauma in the past. I wonder if the

mycoplasma are seeking a new home in places that are weak?

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[Guest guest]

I have had Raynauds attacks since that Tuesday. Funny how stress is a real

barn burner for that condition. Never under-estimate the power of stress.

Thanks,

Donna

----------

> From: Jodi <jferri@...>

> Donna and Ray <donray@...>

> Cc: AP - AP Support Group New <rheumaticonelist>

> Subject: Re: rheumatic remember my freakout...Rheumy Lupus etc.

> Date: Wednesday, February 10, 1999 12:29 PM

>

> Oh Donna, I'm so glad to hear this. I've been thinking about you and

all

> you go through.

> Thanks for the good news.

>

> Jodi

>

> Donna and Ray wrote:

>

> > From: " Donna and Ray " <donray@...>

> >

> > Well,

> > I just got a call from her office yesterday saying the Hematology

report

> > came back NEGATIVE for LUPUS.

> >

> > Oh Man.........poor Ethel had to listen to all my moaning not to

mention

> > all of you guys.

> >

> > I even switched form Minocin to Vibramycin due to the whole episode.

Oh

> > well.....I guess a change is good after 15 months.

> >

> > Go figure.

> >

> > Donna

> > Ottawa, Canada

> > Scleroderma, Raynaud's 4 yrs, AP 15 months

> > (My Story) www.compmore.net/~donray

> >

> >

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

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> > to digest, go to the ONElist web site, at and

> > select the User Center link from the menu bar on the left.

>

[Guest guest]

Donna,

Whatcha talking 'bout, all your moaning? Your posts always seem to me to

be very upbeat, even when you're having problems (must be the stoic Canuck

in you). I'm really glad you got good results.

a (fellow Canuck)

rheumatic remember my freakout...Rheumy Lupus etc.

From: " Donna and Ray " <donray@...>

Well,

I just got a call from her office yesterday saying the Hematology report

came back NEGATIVE for LUPUS.

Oh Man.........poor Ethel had to listen to all my moaning not to mention

all of you guys.

I even switched form Minocin to Vibramycin due to the whole episode. Oh

well.....I guess a change is good after 15 months.

Go figure.

Donna

Ottawa, Canada

Scleroderma, Raynaud's 4 yrs, AP 15 months

(My Story) www.compmore.net/~donray

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[Guest guest]

Oh Donna, I'm so glad to hear this. I've been thinking about you and all

you go through.

Thanks for the good news.

Jodi

Donna and Ray wrote:

> From: " Donna and Ray " <donray@...>

>

> Well,

> I just got a call from her office yesterday saying the Hematology report

> came back NEGATIVE for LUPUS.

>

> Oh Man.........poor Ethel had to listen to all my moaning not to mention

> all of you guys.

>

> I even switched form Minocin to Vibramycin due to the whole episode. Oh

> well.....I guess a change is good after 15 months.

>

> Go figure.

>

> Donna

> Ottawa, Canada

> Scleroderma, Raynaud's 4 yrs, AP 15 months

> (My Story) www.compmore.net/~donray

>

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

> To unsubscribe from this mailing list, or to change your subscription

> to digest, go to the ONElist web site, at and

> select the User Center link from the menu bar on the left.

[Guest guest]

a Peden wrote:

>

> From: a Peden <paula.peden@...>

>a (fellow Canuck)

I'm just curious how many of us (Canucks) are out there?

Theresa

Grande Prairie, Alberta, Canada

>

>

[Guest guest]

Hi Theresa:

I think there's a whole passle of us eh!

Me (Bev) from Kitchener/Waterloo, Southwestern Ontario

Donna in Ottawa, Ontario

Mike Stahl is in London, Ontario I believe

Gwen Armstrong is in Calgary, Alberta

Lin is out west maybe Calgary, Alberta

Pierre is from Quebec

Shaun is in Toronto, Ontario, I think

This is just off the top of my head, eh!

Bev

rheumatic Re: remember my freakout...Rheumy Lupus etc.

>From: kevin suderman <sudertk@...>

>

>a Peden wrote:

>>

>> From: a Peden <paula.peden@...>

>>a (fellow Canuck)

>

>I'm just curious how many of us (Canucks) are out there?

>

>Theresa

>Grande Prairie, Alberta, Canada

>>

>>

>

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

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>to digest, go to the ONElist web site, at and

>select the User Center link from the menu bar on the left.

>

[Guest guest]

Theresa,

Probably quite a few -- this illness seems to be an epidemic here. I live

in Calgary and I can name dozens of people I know who either have RA, lupus

or MS. The bugs either like the cold, the chinooks or the forced air

heating.

a

rheumatic Re: remember my freakout...Rheumy Lupus etc.

From: kevin suderman <sudertk@...>

a Peden wrote:

>

> From: a Peden <paula.peden@...>

>a (fellow Canuck)

I'm just curious how many of us (Canucks) are out there?

Theresa

Grande Prairie, Alberta, Canada

>

>

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[Guest guest]

Carol it is so strange that we pour out our hearts to each other and we

don't even know where each other live. Could be right at our back door.

Thanks for the information. I'm compiling a list.

Hugs from fellow Canuck

Bev

rheumatic Re: remember my freakout...Rheumy Lupus etc.

>>

>>

>>>From: kevin suderman <sudertk@...>

>>>

>>>a Peden wrote:

>>>>

>>>> From: a Peden <paula.peden@...>

>>>>a (fellow Canuck)

>>>

>>>I'm just curious how many of us (Canucks) are out there?

>>>

>>>Theresa

>>>Grande Prairie, Alberta, Canada

>>>>

>>>>

>>>

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

>>>To unsubscribe from this mailing list, or to change your subscription

>>>to digest, go to the ONElist web site, at and

>>>select the User Center link from the menu bar on the left.

>>>

>>

>>

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

>>To unsubscribe from this mailing list, or to change your subscription

>>to digest, go to the ONElist web site, at and

>>select the User Center link from the menu bar on the left.

>>

>>

>

>

[Guest guest]

Dear Donna,

Glad your lupus test was negative!

I've been reeling from a conversation I had with the RD's nurse yesterday.

This is the doctor who prescribed the minocycline. I asked to have my

baseline ex-rays and labs repeated. He sent a message back that he won't

unless there is some big change in my condition.

Then I got another call saying that I could go to one of the other RD's at

Kaiser. This doctor is getting cold feet. I also asked about pain

medications because I think he should handle that rather than my primary

care doctor. Well, the way that request was responded to leads me to

believe that if I were to go for methotrexate I could get pain meds but

since I don't....

I'm going to fade out of that doctor's memory and just keep filling my

minocycline prescriptions.

In the meantime my inflammation is moving around. I got my shoulder back

yesterday and now it's my left wrist and the ring fingers on both hands.

Last week it was my feet and ankles, and then one foot. It's always

something--but it is never as bad as before changing my diet and starting

the antibiotic protocol.

I think I've got the critters on the run. It is of interest to me that the

pain moves to places where I had trauma in the past. I wonder if the

mycoplasma are seeking a new home in places that are weak?

[Guest guest]

Yup.

I pull my minocycline out of my holster while saying, " There's not room in

this body for you and me. " Then I pop my pills and wait to see where they

run off to try to hide again.

Took my mino last night and have been sleepy all day long--must have been

one h*ll of a battle going on. I'm pooped.

hahahaha

[Guest guest]

yep!

Lin is in Calgary as well

Sincerely Western

Gwen

Briarwood wrote:

> From: " Briarwood " <briarwood@...>

>

> Hi Theresa:

>

> I think there's a whole passle of us eh!

>

> Me (Bev) from Kitchener/Waterloo, Southwestern Ontario

> Donna in Ottawa, Ontario

> Mike Stahl is in London, Ontario I believe

> Gwen Armstrong is in Calgary, Alberta

> Lin is out west maybe Calgary, Alberta

> Pierre is from Quebec

> Shaun is in Toronto, Ontario, I think

>

> This is just off the top of my head, eh!

>

> Bev

> rheumatic Re: remember my freakout...Rheumy Lupus etc.

>

> >From: kevin suderman <sudertk@...>

> >

> >a Peden wrote:

> >>

> >> From: a Peden <paula.peden@...>

> >>a (fellow Canuck)

> >

> >I'm just curious how many of us (Canucks) are out there?

> >

> >Theresa

> >Grande Prairie, Alberta, Canada

> >>

> >>

> >

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

> >To unsubscribe from this mailing list, or to change your subscription

> >to digest, go to the ONElist web site, at and

> >select the User Center link from the menu bar on the left.

> >

>

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

> To unsubscribe from this mailing list, or to change your subscription

> to digest, go to the ONElist web site, at and

> select the User Center link from the menu bar on the left.