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  • 4 years later...
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Cooky,

How true your post is. I very naively thought that when the numbers got to " 0 "

that this SD would be gone and I'd be symptom free. So here I am at 186 and

feeling good, but like you get tired if I push it too much. My life is much,

much fuller than when I was first diagnosed and the doctor just put me on the

" will die " list. So another reason I need this group, to help me retain this

almost remission stage and help me when I think I can do everything with lots of

energy and then wonder why I'm exhausted.

Just wondering if you are doing any " exercise " . I am contemplating buying a bike

so that I can peddle around the neighborhood and get back in shape. Do you find

that a lot of heavy exercise tires you out?

Roni

--------- rheumatic Ethel

>

>

>

> I have been reading the posts in here but have never been able to

> post...been a member since a year ago March. So, i just email folks

> with questions and responces to their posts. I recently asked Chris

> for help, she is working on it. This is a " test " post to see if it

> works yet.

>

> Back a year ago March it was a posts in here that made me search

> further for information the antibiotic therapy. I have been on AP one

> year and have been blessed with a renewed life....not remission yet,

> but on my way. Thanks for caring.

> Jan

>

>

>

>

>

>

>

> To unsubscribe, email: rheumatic-unsubscribeegroups

>

>

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Guest guest

rb09322@... writes:

> Cooky,

> How true your post is. I very naively thought that when the numbers got to " 0 "

that this SD would be gone and I'd be symptom free. So here I am at 186 and

feeling good, but like you get tired if I push it too much. My life is much,

much fuller than when I was first diagnosed and the doctor just put me on the

" will die " list. So another reason I need this group, to help me retain this

almost remission stage and help me when I think I can do everything with lots of

energy and then wonder why I'm exhausted.

>

> Just wondering if you are doing any " exercise " . I am contemplating buying a

bike so that I can peddle around the neighborhood and get back in shape. Do you

find that a lot of heavy exercise tires you out?

> Roni

>

> --------- rheumatic Ethel

>>

>>

>>

>> I have been reading the posts in here but have never been able to

>> post...been a member since a year ago March. So, i just email folks

>> with questions and responces to their posts. I recently asked Chris

>> for help, she is working on it. This is a " test " post to see if it

>> works yet.

>>

>> Back a year ago March it was a posts in here that made me search

>> further for information the antibiotic therapy. I have been on AP one

>> year and have been blessed with a renewed life....not remission yet,

>> but on my way. Thanks for caring.

>> Jan

>>

>>

>>

>>

>>

>>

>>

>> To unsubscribe, email: rheumatic-unsubscribeegroups

>>

>>

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Guest guest

I just emailed about my exercises. A bike is great if you don't have knee

problems. I just don't do heavy exercise. Ifind even the mall tires me out but

then I think it my age and not working at a job.

cooky

rheumatic Re: Cooky

rb09322@... writes:

> Cooky,

> How true your post is. I very naively thought that when the numbers got to " 0 "

that this SD would be gone and I'd be symptom free. So here I am at 186 and

feeling good, but like you get tired if I push it too much. My life is much,

much fuller than when I was first diagnosed and the doctor just put me on the

" will die " list. So another reason I need this group, to help me retain this

almost remission stage and help me when I think I can do everything with lots of

energy and then wonder why I'm exhausted.

>

> Just wondering if you are doing any " exercise " . I am contemplating buying a

bike so that I can peddle around the neighborhood and get back in shape. Do you

find that a lot of heavy exercise tires you out?

> Roni

>

> --------- rheumatic Ethel

>>

>>

>>

>> I have been reading the posts in here but have never been able to

>> post...been a member since a year ago March. So, i just email folks

>> with questions and responces to their posts. I recently asked Chris

>> for help, she is working on it. This is a " test " post to see if it

>> works yet.

>>

>> Back a year ago March it was a posts in here that made me search

>> further for information the antibiotic therapy. I have been on AP one

>> year and have been blessed with a renewed life....not remission yet,

>> but on my way. Thanks for caring.

>> Jan

>>

>>

>>

>>

>>

>>

>>

>> To unsubscribe, email: rheumatic-unsubscribeegroups

>>

>>

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  • 1 year later...

Cooky,

I live in PA also and have been on the AP for about 6 years. My primary doctor

initally prescribed the AP for me (learned by working on me and reading) and now

I also go to Dr. Whitman in NJ.

I live in a small town near town. There is also another doctor in town

that does the AP, can't recall his name, but if you need it I can find it for

you.

If you e-mail me and let me know if you live nearby I may be able to help you

out.

Roni

RE: rheumatic Re: Any of you doing okay with Celebrex and Minocycline

alone?

rheumatic

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Sorry I'm in Pennsylvania and it is impossible to find anyone here who

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> knows or does ap. The doc I go to will do it but he is here and does not

>

> specifically do ap. You can get all the info you need here by asking

>

> questions and reading the info on the web site. We have a good group here

>

> that is very willing to give anyone all their vast knowledge <grin> of

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> antibiotics and tweeking them.

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> As for this rheumy.call him with questions and bugg him to do what you want

>

> especially if he is knowledgeable about abx.your paying big bucks to him

>

> and he should be willing to earn them <bigger grin>. You know we have a few

>

> people on mtx and minocin. I actually think I would have been better off

>

> taking them both but at the time no one was doing it and everyone said

>

> Nooooo you can't do that. Mtx can take down some of the inflammation and

>

> make you more comfortable while waiting for the Minocin to kick in. Just a

>

> suggestion if you are in really bad pain.

>

>

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> Hope you get to feel better soon.

>

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> Cooky

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>

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  • 6 months later...

Wow!  Leonie.  The last thing we want to do is give anyone of us a literal kick

in the butt.  After all, we are all feeling what you are feeling along our

journeys to get well.  We are all angry that we have these (and I will not curse

here) @#%^ & diseases that keep us dangling all the time on an emotional

merry-go-round.  But, you know what got me on the path to healing was someone

telling me that I must be living under a rock because I never heard of A/P. Made

me feel stupid, but it was what I needed at that time. That was 2005 and I was

bedridden and given up.  After A/P, 18 months later, I went into remission.  so,

sometimes we do need a kind, swift kick to get us moving again.  Up north here,

we do that with a whole lot of compassion and love. I'm on MP now and far from

being cured.  Instead I am stirring up more micoplasmas and sometimes want to

give up.  But, I'm sticking to it because, what the hell else do we have?  The

alternative

is to stop trying and kick the bucket.  So, we all give each other a gentle

kick in the butt to get motivated once again.  BTW, hope you're feeling a bit

better today.  The best to you, Dolores 

From: leonie cent <leoniecentbigpond (DOT) com>

Subject: rheumatic Cooky

rheumatic@grou ps.com

Date: Tuesday, August 26, 2008, 5:54 PM

Yeah well Cooky, I'm going thru a very tough time right now, and asking

questions to try and figure things out. If i wasn't interested in AP, i wouldn't

bother to try and discuss things and get to the bottom of it. I have bad brain

fog and can't read everything and take in information. I have an anxiety

disorder which means i can't concentrate on anything or understand stuff and get

my act together. I never noticed you or anyone offering to coach me a bit, even

tho some on this list do give me a lot of help and information re AP and

detoxing etc. And you shouting at me with your capitals letters and terse

language just tells me you are a radical nut with no heart! You are mean.

Goodbye! I'm going on methotrexate.

~Leonie

leoniecentbigpond (DOT) com

02 62556202

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