RE: Introduction pretty long

[Guest guest]

Good luck. It is very encouraging when rheumy is on board and seems to really

want to find a " cure " as opposed to just prescribing drugs.

It's a long journey, that's for sure.

Sue

---- Carole Stein <carolestein127.3@...> wrote:

> My name is Carole Stein. I live in South Florida. I have been

> treated at the Cleveland Clinic in Cleveland since January, 2009 for

> Mixed Connective Tissue Disease. My disease started, I believe, in the

> summer of 2008, when my PCP switched me from HRT to biodentical

> hormones, which the compounding pharmacy could never get right -A blood

> test in August, 2008 showed elevated ANA - Then even though I was going

> to work out 3 days a week, my legs started to hurt - then in November,

> after a manicure, one finger started to turn blue, followed by all

> fingers on both hands - then I got a herpes simplex on one side of my

> lip twice within two weeks in the same place - the second time, the

> opposite side of my face went numb - and swollen -

> My sister-in-law got me a contact at Cleveland in December, 2008 and I

> was seen the entire first week in January. The rheumatologist called me,

> told me I had mctd, my cpk was around 1600 went up to 2100 - aldolase

> was as high as 15 now it is 4.2 and my CPK is 385 -

> Prednisone was poison to me - the side effects were off the wall -

> methotrexate made my tongue swell - I have no sense of taste and little

> appetite even after being off of methotrexate for 6 weeks - I went off

> of pred in March, 2010 - The side effects, physical and mental were

> overwhelming. I was put in the hospital in Cleveland in March, 2009 for

> 6 days including 4 days of IVIG - my cpk dropped 800 points - but it

> hasn't dropped much since then - I made arrangements with MD in

> Orlando, yes they have associate hospital in Orlando that is pretty darn

> good, to do IVIG every 4 weeks - While I tolerated it well over 2 days

> instead of 4 - the last treatment was horrible - so now no more IVIG - I

> have been doing cellcept since October 2009. That seems to be the only

> thing that is slowly working - So now I am at 3000mg of cellcept -

> nothing else - my dr said that the drug of last resort is rituxan.

> So I came to the conclusion that I am not going to get well - even

> though I have done PT 5 days a week for 4 months - on and on -

>

> Last night there was a Tony Robbins show on - it got my interest - so I

> thought I would do one last look to see if I could find anything or

> anyone else who just maybe might offer a clue. Low and behold, I guess

> it is how I googled but rheumatic.org came up and a posting from LInda

> Carlson - that is pretty old -

>

> I hurt alot most of the time - my back locks, can't walk long distances,

> going from sitting to standing etc is just awlful I can barely lift my

> arms above my shoulders - I am sure you all know the typical myositis stuff

>

> The good news is that my Rheumie likes me researching and actively

> participating in my care. So I emailed him - Even if he knows about

> this, which I am sure he does, and doesn't believe in it, since

> conventional therapy isn't working - I bet he will be game.

> We shall see.

>

> Carole Stein

>

> --

> Carole S. Stein

> carolestein127.3@...

> http://www.onlinepetmemorials.com

> http://www.rainbowbridgefordogs.com

> Proud owner of wood Double Dose RTD (Registered Therapy Dog)

>

[Guest guest]

Hi Carole,

I and many of us have great empathy for you. A lot of us have been thru the

horrible doctors and procedures. I am glad you found us. If you want to read

more stories go to http://www.rheumatic.org/medhist.htm they might give you

encouragement. I do not have MCTD but I know there are some on this board

who do. If you have any questions please feel free to ask. I wish you the

best of luck with the AP (antibiotic protocol).

Cooky

RA 1997 AP 1997

From: rheumatic [mailto:rheumatic ] On Behalf

Of Carole Stein

Sent: Wednesday, July 28, 2010 7:46 AM

rheumatic

Subject: rheumatic Introduction pretty long

My name is Carole Stein. I live in South Florida. I have been

treated at the Cleveland Clinic in Cleveland since January, 2009 for

Mixed Connective Tissue Disease. My disease started, I believe, in the

summer of 2008, when my PCP switched me from HRT to biodentical

hormones, which the compounding pharmacy could never get right -A blood

test in August, 2008 showed elevated ANA - Then even though I was going

to work out 3 days a week, my legs started to hurt - then in November,

after a manicure, one finger started to turn blue, followed by all

fingers on both hands - then I got a herpes simplex on one side of my

lip twice within two weeks in the same place - the second time, the

opposite side of my face went numb - and swollen -

My sister-in-law got me a contact at Cleveland in December, 2008 and I

was seen the entire first week in January. The rheumatologist called me,

told me I had mctd, my cpk was around 1600 went up to 2100 - aldolase

was as high as 15 now it is 4.2 and my CPK is 385 -

[Guest guest]

Hi Carol,

I'm a " newbee " here.  Have RA for 4 years.....and have been homebound most of

the time.  Did drugs for awhile, felt better, but didn't want to add more, side

effects, etc...so jumped off that roller coaster and spent a few thousand $ on

alternative, raw diet, etc...Been on AP for 4 weeks.  It's frightening because

I am back to bed more, crying more, wondering if I'm going to make it....or even

if I want to!   So, I guess you can say AP is working.  Thanks so much to the

encouragement of people of this site, who have been through this and

encouragement to keep moving forward and that it is working!   So, now with my

little experience, I now can tell you to keep moving forward with AP and join us

for recovery, remission, and an incredible new abundant live waiting us!  Sally

rheumatic Introduction pretty long

My name is Carole Stein. I live in South Florida. I have been

treated at the Cleveland Clinic in Cleveland since January, 2009 for

Mixed Connective Tissue Disease. My disease started, I believe, in the

summer of 2008, when my PCP switched me from HRT to biodentical

hormones, which the compounding pharmacy could never get right -A blood

test in August, 2008 showed elevated ANA - Then even though I was going

to work out 3 days a week, my legs started to hurt - then in November,

after a manicure, one finger started to turn blue, followed by all

fingers on both hands - then I got a herpes simplex on one side of my

lip twice within two weeks in the same place - the second time, the

opposite side of my face went numb - and swollen -

My sister-in-law got me a contact at Cleveland in December, 2008 and I

was seen the entire first week in January. The rheumatologist called me,

told me I had mctd, my cpk was around 1600 went up to 2100 - aldolase

was as high as 15 now it is 4.2 and my CPK is 385 -

[Guest guest]

I have been on Mino and LDN for sometime now and finally feeling better. I know

what you are going through since I am in the same boat as you all are. For

anti-inflammatories, I use NAC and Alpha Lipoic acid, Fish oil, Evening primrose

oil, MSM, Bosewellia serrata, Vitamin C. Using all of these supplements

everyday, I am finally feeling almost like a normal person again.

From: mannasal@... <mannasal@...>

Subject: RE: rheumatic Introduction pretty long

rheumatic

Date: Wednesday, July 28, 2010, 12:42 PM

 

Hi Carol,

I'm a " newbee " here.  Have RA for 4 years.....and have been homebound most of

the time.  Did drugs for awhile, felt better, but didn't want to add more, side

effects, etc...so jumped off that roller coaster and spent a few thousand $ on

alternative, raw diet, etc...Been on AP for 4 weeks.  It's frightening because

I am back to bed more, crying more, wondering if I'm going to make it....or even

if I want to!   So, I guess you can say AP is working.  Thanks so much to the

encouragement of people of this site, who have been through this and

encouragement to keep moving forward and that it is working!   So, now with my

little experience, I now can tell you to keep moving forward with AP and join us

for recovery, remission, and an incredible new abundant live waiting us!  Sally

rheumatic Introduction pretty long

My name is Carole Stein. I live in South Florida. I have been

treated at the Cleveland Clinic in Cleveland since January, 2009 for

Mixed Connective Tissue Disease. My disease started, I believe, in the

summer of 2008, when my PCP switched me from HRT to biodentical

hormones, which the compounding pharmacy could never get right -A blood

test in August, 2008 showed elevated ANA - Then even though I was going

to work out 3 days a week, my legs started to hurt - then in November,

after a manicure, one finger started to turn blue, followed by all

fingers on both hands - then I got a herpes simplex on one side of my

lip twice within two weeks in the same place - the second time, the

opposite side of my face went numb - and swollen -

My sister-in-law got me a contact at Cleveland in December, 2008 and I

was seen the entire first week in January. The rheumatologist called me,

told me I had mctd, my cpk was around 1600 went up to 2100 - aldolase

was as high as 15 now it is 4.2 and my CPK is 385 -