my bad

[Guest guest]

Hi Everyone,

This is kind of an update...kind of embarrassing because I should have known

better.

Before Christmas of 2008 I started to forget taking my 200mgm 2 times a day

minocin. I have been on minocin since October 1997. By spring of 2009 I was

taking it here and there. By summer I stopped altogether. I had hardly any

pain(I have rheumatoid arthritis and fibro) and no farther deformaties

(which are very small to say the least).

Fall of 2009 I started having back aches.not spinal but pretty severe. I

also had 2 toes that were red and ached a lot. I attributed this to

everything except rheumatoid. Christmas was bad with the back ache and the

toes hurt a lot but I said it was from baking and cooking and there is the

fibro. By January my knuckles on left hand were achy and swollen but on an

irregular basis so hey it was just fibro.

In March hubby and I put in a new kitchen and I pushed and pulled a lot. I

also used my arms to take out and put things in the new cabinets. Nuckles

hurt back hurt. Then BOTH rotator cuffs and muscles in the arms hurt so bad

I could not move them. It felt like something I had in my earlier days of

rheumatoid. Called my doc and had a rheumatoid factor done. Since about

year 2000 all my tests had been negative. I did not even see a

rheumatologist in the last 8 years. The rheumatoid factor was 95! This is

what it was in 1997 when I was first diagnosed! The CRP was 4.2. The week

before testing I started back on Minocin. slowly. Talked to my doctor and he

refused to let me do my own IV's again (hubby tied the tourniquet and held

the skin and I inserted a needle..being a nurse I knew how to set it up and

insert the needles). He said insurance( mumble- mumble something). Ok so I

said how about oral? Yes I could and even tho IM shots did nothing for me I

had to try. (have an app in June and if I am not better I will convince him

to let me do IV's)

I am doing physical therapy for the arms..about 3 weeks now. They are better

but still pain at night sometimes. Left knuckles still swelling at times.

Last week the right hand nuckles started hurting. Right ankle swollen now

like in 1997. Top of shoulders ache bad. I have mitro valve prolapsed and

have what feels like skipped beats and they started with a vengeance.

OMGoodness what is going on here.I was freaking out. About 6 weeks on

Minocin and 5 on clindy oral and I think I am having a herx!!!

I don't know how long I had a increased rheumatoid factor. I had aches and

what I called my " normal pain " ..so did I have an increase for 3 years.2

years? 6 months? I will never go a year without having a RF done again. I

won't chalk up pain to daily living. I don't know if anything bad happened

to those knuckles while I was off minocin or what else happened to my body.

Thanks for listening and get a RF done.

Hugs

cooky

[Guest guest]

Hi ,

Cooky, I just want to crawl through this darned computer and give you a big hug.

THANK YOU SANDRA, A FEW WEEKS AGO I COULD HAVE USED A HUG. I WAS SHOCKED WHEN

THE PERSON IN MY DOCTORS OFFICE GAVE ME THE RESULTS. I HAVE BEEN WITH DOC

GOLDSTEIN SINCE BEFORE I HAD RA AND HE RESPECTS THAT I AM A NURSE AND GOES ALONG

WITH MOST THINGS I WANT. HE IS NOT A RHEUMY SO HE NEVER SUGGESTED I HAVE A RF

DONE. I STOPPED GOING TO THE RHEUMATOLOGIST BECAUSE SHE WASN’T DOING ANYTHING

ANYMORE SINCE ALL MY TESTS WERE NEGATIVE AND MY MEDS WERE BEING TAKEN CARE OF

ELSEWHERE. MY PRIMARY CARE DOC THAT IS PAID FOR BY INSURANCE… BASICALLY GOT

TOLD ON MY FIRST VISIT â€I WILL TELL YOU WHAT I WANT…YOU ARE JUST HERE FOR

INSURANCE AND IF I NEED TO BE ADMITTED TO THE HOSPITAL FOR SOMETHINGâ€. HE HAS

BEEN VERY GOOD TO ME BUT ONLY DID BASIC TESTING AND WHAT I ASKED FOR. IT’S

FUNNY AND UPSETTING …WHEN I WENT TO HIM COMPLAINING THE ULTRAM WASN’T DOING

ANYTHING….I CAN’T TAKE ANTI INFLAMS ANYMORE… AND I NEEDED SOMETHING

STRONGER HE REFUSED. SAID I AM TOO YOUNG TO BE GETTING INTO “HARD DRUGS†I

AM 63. NEITHER OF US REALIZED WHY THE ULTRAM WASN’T WORKING. did not do what

you did. I guess because I am in a different place from the physician who has

brought me to wellness and that my docs here who treat me for any old thing do

not believe in AP protocol, and because here I am, not only ALIVE but well, I am

tested for all these things for the least little thing, for a new prescription

for my thyroid, for sinus infections etc. Somehow, these tests are always

slipped into the blood studies DON’T KNOCK IT THEY MAY HAVE SAVED YOU FROM

SOMETHING GETTING WORSE.

.. I feel like a bug here under a microscope being surrounded by the Elite

medical corridor who wear the white coats with the stethescopes hanging around

their necks but lacking the DESIRE to learn these newer things that work.

ly, I think they have become arrogant and lazy. I HAVE TO ADMIT THEY ARE.

THEY DO EVERYTHING BY THE BOOK AND IN A STRAIGHT LINE.

Reading your email does make me wonder if I need to up my Minocin. I had gone

off completely and another email scared me so I went back on it 100 mg once a

day MWF which is half of what I always did in my pursuit. All my tests still

come back negative but with scleroderma, I am a believer in keeping this baby

under control. I don't think scared begins to describe my feelings about the

scleroderma coming back. I KNOW EXACTLY WHAT YOU MEAN. THE PAIN ISN’T AS BAD

AS IT WAS IN THE BEGINNING BUT THE THOT OF A DEFORMATY MAKES ME SHUDDER. JUST

MY OPINION…KEEP UP THE TESTS AND KEEP AN EYE OUT FOR ANYTHING OUT OF THE

ORDINARY. I WISH I HAD THOT OF DOING TESTS WHEN MY TOE BECAME IMFLAMED.

In the meantime, I will keep you in my prayers THANK YOU SOO VERY MUCH and know

there are many, many of us old timers out here in cyberspace who will be wishing

you back to wellness quickly. I think we both arrived here at this site just

about the same time - a lifetime ago, wasn't it? YEP By the way, when I had gone

off and went back on at this dosage, I herxed. HOW LONG BEFORE THE HERX STOPPED?

DID YOU DO ANYTHING LIKE ADD ANTI INFLAMS OR CORTISONE? I TOOK CORTEF WHICH IS A

NATURAL CORTISONE AND THE DOSAGE IS LOWER. I EMAILED DOC G FOR A PRESCRIPTION

BECAUSE THE RIGHT HAND IS STIFF AND SOME FINGERS ARE UNCOMFORTABLE NOW…I

REALLY DON’T WANT ANY FINGERS OUT OF PALCE OR DEFORMED! Guess that never goes

away.i THOT IT WOULD BUT I GUESS AS LONG AS THOSE MYCOS ARE IN OUR BODIES WE

WILL HERX WHEN WE KILL THEM.

Keep us all apprised. The newcomers need to see this to so that they truly

understand this journey I HOPE IT DOESN’T SCARE ANYONE OFF. I KNOW A LOT OF

PEOPLE HAVE CONTACTED ME PERSONALLY OVER THE YEARS AND I WONDER WHAT HAPPENED TO

THEM AND IF THEY QUIT AP. and how much they have to gain and lose. Love,

Fain

THANK YOU SO MUCH SANDRA AND I HOPE YOU NEVER GO BACK TO WHERE YOU STARTED. GOD

BLESS.

COOKY

rheumatic my bad

Hi Everyone,

This is kind of an update...kind of embarrassing because I should have known

better.

Before Christmas of 2008 I started to forget taking my 200mgm 2 times a day

minocin. I have been on minocin since October 1997. By spring of 2009 I was

taking it here and there. By summer I stopped altogether. I had hardly any

pain(I have rheumatoid arthritis and fibro) and no farther deformaties

(which are very small to say the least).

Fall of 2009 I started having back aches.not spinal but pretty severe. I

also had 2 toes that were red and ached a lot. I attributed this to

everything except rheumatoid. Christmas was bad with the back ache and the

toes hurt a lot but I said it was from baking and cooking and there is the

fibro. By January my knuckles on left hand were achy and swollen but on an

irregular basis so hey it was just fibro.

In March hubby and I put in a new kitchen and I pushed and pulled a lot. I

also used my arms to take out and put things in the new cabinets. Nuckles

hurt back hurt. Then BOTH rotator cuffs and muscles in the arms hurt so bad

I could not move them. It felt like something I had in my earlier days of

rheumatoid. Called my doc and had a rheumatoid factor done. Since about

year 2000 all my tests had been negative. I did not even see a

rheumatologist in the last 8 years. The rheumatoid factor was 95! This is

what it was in 1997 when I was first diagnosed! The CRP was 4.2. The week

before testing I started back on Minocin. slowly. Talked to my doctor and he

refused to let me do my own IV's again (hubby tied the tourniquet and held

the skin and I inserted a needle..being a nurse I knew how to set it up and

insert the needles). He said insurance( mumble- mumble something). Ok so I

said how about oral? Yes I could and even tho IM shots did nothing for me I

had to try. (have an app in June and if I am not better I will convince him

to let me do IV's)

I am doing physical therapy for the arms..about 3 weeks now. They are better

but still pain at night sometimes. Left knuckles still swelling at times.

Last week the right hand nuckles started hurting. Right ankle swollen now

like in 1997. Top of shoulders ache bad. I have mitro valve prolapsed and

have what feels like skipped beats and they started with a vengeance.

OMGoodness what is going on here.I was freaking out. About 6 weeks on

Minocin and 5 on clindy oral and I think I am having a herx!!!

I don't know how long I had a increased rheumatoid factor. I had aches and

what I called my " normal pain " ..so did I have an increase for 3 years.2

years? 6 months? I will never go a year without having a RF done again. I

won't chalk up pain to daily living. I don't know if anything bad happened

to those knuckles while I was off minocin or what else happened to my body.

Thanks for listening and get a RF done.

Hugs

cooky

[Guest guest]

Hi ,

Normally I flare in the summer. And a normal flare for me (I would still be

on Minocin) whould just be achiness and pain in different areas than where

it was this time. I would increase minocin to add Saturday and it would last

a week to a few days then just stop and I would go back on minocin. I would

also do a different tetracycline during a flare. This time the toe became

swollen (never had swelling like this) and new places that had never acted

up started to.

Did you take Enbril before or after the fall flare? Can you get off the

enbril? Who writes for the minocin? Could he add another antibiotic? I hate

to add my opinion but getting off enbrila nd adding an other antibiotic with

a small amount of cortisol (not cortisone) could fix things for you.

Do you also take care of your liver and gut? How about acidophilis?

NEVER stop trying to

From: rheumatic [mailto:rheumatic ] On Behalf

Of

Sent: Saturday, April 24, 2010 11:30 AM

rheumatic

Subject: rheumatic my bad

This must be the winter of flares, I was diagnosed with RA in 98 and went on

minocin and did great until last fall. My sed ended up being 100, I was on

crutches. I never stopped my minocin, but I did built a barn last summer,

worked hard did alot of riding and for along time refused to believe it was

my RA. I finally went to a rhumatologist and while I still take minocin I

also take enbril, something I had hoped to avoid. I fell better, but I lost

20 pounds of muscle during my flare and I still have a bakers cyst behind my

left knee and that knee will buckle if I do stretches where I just stand on

it and put my right leg up and stretch. So I know everyday that I damaged

myself by not doing something sooner. I had thought I had beat RA, but I

guess you never get to do that.

Here's hoping we all have a better spring.

[Guest guest]

Hi Cooky

I was the poster girl for antibiotics for years, I was 60 when I went to

Iceland on a 3 week horseback riding tour and I came in second in a limbo

contest, losing to a 19 year old, then it all went away. My liver and stuff

is good and I have not problems except for this. I would like to get off

Enbril, but I've decided this is my last chance to do everything I want to

so I'm staying on enbril and buying a Harley and hitting the road. The RA

is going to get me so I'm going to take a couple years and just kickass and

take names, I think it's my last chance and I won't let this one slip by.

Wish me fun and luck.

On Sat, Apr 24, 2010 at 2:01 PM, Cooky Stonkey <cookee1@...> wrote:

>

>

> Hi ,

>

> Normally I flare in the summer. And a normal flare for me (I would still be

> on Minocin) whould just be achiness and pain in different areas than where

> it was this time. I would increase minocin to add Saturday and it would

> last

> a week to a few days then just stop and I would go back on minocin. I would

> also do a different tetracycline during a flare. This time the toe became

> swollen (never had swelling like this) and new places that had never acted

> up started to.

>

> Did you take Enbril before or after the fall flare? Can you get off the

> enbril? Who writes for the minocin? Could he add another antibiotic? I hate

> to add my opinion but getting off enbrila nd adding an other antibiotic

> with

> a small amount of cortisol (not cortisone) could fix things for you.

>

> Do you also take care of your liver and gut? How about acidophilis?

>

> NEVER stop trying to

>

> From: rheumatic <rheumatic%40> [mailto:

> rheumatic <rheumatic%40>] On Behalf

> Of

> Sent: Saturday, April 24, 2010 11:30 AM

> rheumatic <rheumatic%40>

> Subject: rheumatic my bad

>

>

> This must be the winter of flares, I was diagnosed with RA in 98 and went

> on

> minocin and did great until last fall. My sed ended up being 100, I was on

> crutches. I never stopped my minocin, but I did built a barn last summer,

> worked hard did alot of riding and for along time refused to believe it was

> my RA. I finally went to a rhumatologist and while I still take minocin I

> also take enbril, something I had hoped to avoid. I fell better, but I lost

> 20 pounds of muscle during my flare and I still have a bakers cyst behind

> my

> left knee and that knee will buckle if I do stretches where I just stand on

> it and put my right leg up and stretch. So I know everyday that I damaged

> myself by not doing something sooner. I had thought I had beat RA, but I

> guess you never get to do that.

> Here's hoping we all have a better spring.

>

>

>

[Guest guest]

That sounds like fun! Kickass girl!

I wish you the most fun and best of luck.

Cooky

Re: rheumatic my bad

Hi Cooky

I was the poster girl for antibiotics for years, I was 60 when I went to

Iceland on a 3 week horseback riding tour and I came in second in a limbo

contest, losing to a 19 year old, then it all went away. My liver and stuff

is good and I have not problems except for this. I would like to get off

Enbril, but I've decided this is my last chance to do everything I want to

so I'm staying on enbril and buying a Harley and hitting the road. The RA

is going to get me so I'm going to take a couple years and just kickass and

take names, I think it's my last chance and I won't let this one slip by.

Wish me fun and luck.

[Guest guest]

Thank you very much, I will report back in a couple years!

On Sat, Apr 24, 2010 at 3:33 PM, Cooky Stonkey <cookee1@...> wrote:

>

>

> That sounds like fun! Kickass girl!

>

> I wish you the most fun and best of luck.

>

> Cooky

>

> Re: rheumatic my bad

>

> Hi Cooky

>

> I was the poster girl for antibiotics for years, I was 60 when I went to

> Iceland on a 3 week horseback riding tour and I came in second in a limbo

> contest, losing to a 19 year old, then it all went away. My liver and stuff

> is good and I have not problems except for this. I would like to get off

> Enbril, but I've decided this is my last chance to do everything I want to

> so I'm staying on enbril and buying a Harley and hitting the road. The RA

> is going to get me so I'm going to take a couple years and just kickass and

> take names, I think it's my last chance and I won't let this one slip by.

> Wish me fun and luck.

>

>

>

>

>

[Guest guest]

Cookie, a quick answer to your question about herx is that I herx ONE month

almost to the day after i have changed something. Some people, as you know,

begin to herx immediately or a week or two later, but I have always been just

almost true to the date. Also, we continue to do an RA factor but mine has

always been negative. My sister in Oklahoma who has scleroderna , too, tested

positive for the RA. I count my blessings on that one. My hands are absolutely

straight except for a family genetic trait. Those straightening out - even

though they were never completely curled in, were the last things to change.

Also, as far as anti-inflams, part of my cleanup from scleroderma was I lost a

kidney and had heart ablation. I have always been alleergic to ALL pain meds so

counted on Advil, Tylinol etc to get me through problems. After the kidney

removal, I have been told I may not have ANTHING other than tylinol. That works

for me,

rheumatic my bad

Hi Everyone,

This is kind of an update...kind of embarrassing because I should have known

better.

Before Christmas of 2008 I started to forget taking my 200mgm 2 times a day

minocin. I have been on minocin since October 1997. By spring of 2009 I was

taking it here and there. By summer I stopped altogether. I had hardly any

pain(I have rheumatoid arthritis and fibro) and no farther deformaties

(which are very small to say the least).

Fall of 2009 I started having back aches.not spinal but pretty severe. I

also had 2 toes that were red and ached a lot. I attributed this to

everything except rheumatoid. Christmas was bad with the back ache and the

toes hurt a lot but I said it was from baking and cooking and there is the

fibro. By January my knuckles on left hand were achy and swollen but on an

irregular basis so hey it was just fibro.

In March hubby and I put in a new kitchen and I pushed and pulled a lot. I

also used my arms to take out and put things in the new cabinets. Nuckles

hurt back hurt. Then BOTH rotator cuffs and muscles in the arms hurt so bad

I could not move them. It felt like something I had in my earlier days of

rheumatoid. Called my doc and had a rheumatoid factor done. Since about

year 2000 all my tests had been negative. I did not even see a

rheumatologist in the last 8 years. The rheumatoid factor was 95! This is

what it was in 1997 when I was first diagnosed! The CRP was 4.2. The week

before testing I started back on Minocin. slowly. Talked to my doctor and he

refused to let me do my own IV's again (hubby tied the tourniquet and held

the skin and I inserted a needle..being a nurse I knew how to set it up and

insert the needles). He said insurance( mumble- mumble something). Ok so I

said how about oral? Yes I could and even tho IM shots did nothing for me I

had to try. (have an app in June and if I am not better I will convince him

to let me do IV's)

I am doing physical therapy for the arms..about 3 weeks now. They are better

but still pain at night sometimes. Left knuckles still swelling at times.

Last week the right hand nuckles started hurting. Right ankle swollen now

like in 1997. Top of shoulders ache bad. I have mitro valve prolapsed and

have what feels like skipped beats and they started with a vengeance.

OMGoodness what is going on here.I was freaking out. About 6 weeks on

Minocin and 5 on clindy oral and I think I am having a herx!!!

I don't know how long I had a increased rheumatoid factor. I had aches and

what I called my " normal pain " ..so did I have an increase for 3 years.2

years? 6 months? I will never go a year without having a RF done again. I

won't chalk up pain to daily living. I don't know if anything bad happened

to those knuckles while I was off minocin or what else happened to my body.

Thanks for listening and get a RF done.

Hugs

cooky