I need your opinion

[Guest guest]

To bring you up to date and for our newer members.

I had total knees doneabout 4 years ago. Ended up catching hospital

MRSA and ended up being in one hospital or another for two and one

half years.

It isnot really possible to tell if it is killed because it can

hibernate and act like it is dead when in fact its hibernating.

There is a blood test that they use to stage the MRSA it is called a

C Reactive Protein. Unfortunatly when you have Neurosarc it also

affect this blood test and elevates the test results the same thing

happens when you have MRSA. So for us this is not a reliable test. I

once got down to zero but then two weeks later I was at 3 and then it

went to 7.

Now the Rheumatologist that I went to last week, called at home to

talk about my lab results as well as other things.I layed it all out

that I did not appreciate being told that I had brain atrophy and was

senile.

He said that I had misunderstood and that he had said that he listed

that as one of the things that could be wrong with me instead of

Neurosarc. I told him I felt he was afraid that my MRSA would start

up again if they gave me Remicade as Dr. Baughman had ordered for me.

He told me I was correct and he was very concerned that he could make

me sicker than I am now. We talked for about 30 minutes and I feel we

were talking like two peers. I told him that I hadmade an appointment

with my internst and infectious disease doctors for this week to

discuss my options.

Now here is my dilema I really have been having a terrible time with

bone pain for the past couple of months. This morning was the

absoluate worst. It was in everybone in my body and it was a ten. I

had an appointment with the hematologist office for blood test. I

left for the appointment in tears my pain was a ten and I was beyond

myself because of the pain. Of course when they did my labs my

hemaglobin had again dropped so I needed IV iron and aronesp. When I

got there I was still in tears so I went to one of the private rooms

rather than into the room wereabout 8 patients are getting there

chemo.

When we got there Bob found Beth one of my favorite nurses there.

They are all great but I just like Beth the best to talk to. There I

sat crying because of the pain. I asked Bob to step out when she came

in because she might respond differently if he was not there.

She is so dear, she told me that what I most needed was to get my

pain undercontrol. She suggested that I see a pain specialist as

there were other options I had not thought of such as dilaudid and or

methadone. She suggesed that I take two of the Vicoden ES every four

hours instead of just one. I really was not thinking because of the

severity of my pain. I had them with me and taking a second one did

help.

NOW MY DILEMA-IF I FIND SOMEONE WHO WILL ACCEPT ME AS A PATIENT AND

GIVE ME THE REMACADE AS DR. BAUGHMAN SUGGESTED AND NOT THINK ABOUT IT

CAUSING MY MRSA TO BECOME ACTIVE IN ADDITION TO THE CONCERN THAT ONE

COULD ALSO DEVELOP LYMPHOMA.

Today was the first time my pain had reached a 10 out of 10. My

quality of life is really the pits. I probably also have sarc in my

bonemarrow,which is causing my bone marrow to not make mostly

unhealthly RBC's and today my WBC's were also dropping.

When I had MRSA before it caused me to have 23 operations on my legs

because it attaches itself to prosthesis and there is nothing that

can remove it so they have to take out the prosthesis, then they wait

until they think it is gone and then they reoperate to put the

prosthesis in again. I had 23 surgeries. Which is like having 23

total knee operations. Unbelievable pain, kidneys trying to shut

down, depression and many other problems. I coded three times and

had flash pulmonary edema plus a few more serious complications. I am

now left with the dilema . I need your opinions. What would you do if

you were in my place. I feel like I am being forced do you choose to

die by being hung or the electric chair. Help, I just can't think.

Judy in PA

[Guest guest]

To bring you up to date and for our newer members.

I had total knees doneabout 4 years ago. Ended up catching hospital

MRSA and ended up being in one hospital or another for two and one

half years.

It isnot really possible to tell if it is killed because it can

hibernate and act like it is dead when in fact its hibernating.

There is a blood test that they use to stage the MRSA it is called a

C Reactive Protein. Unfortunatly when you have Neurosarc it also

affect this blood test and elevates the test results the same thing

happens when you have MRSA. So for us this is not a reliable test. I

once got down to zero but then two weeks later I was at 3 and then it

went to 7.

Now the Rheumatologist that I went to last week, called at home to

talk about my lab results as well as other things.I layed it all out

that I did not appreciate being told that I had brain atrophy and was

senile.

He said that I had misunderstood and that he had said that he listed

that as one of the things that could be wrong with me instead of

Neurosarc. I told him I felt he was afraid that my MRSA would start

up again if they gave me Remicade as Dr. Baughman had ordered for me.

He told me I was correct and he was very concerned that he could make

me sicker than I am now. We talked for about 30 minutes and I feel we

were talking like two peers. I told him that I hadmade an appointment

with my internst and infectious disease doctors for this week to

discuss my options.

Now here is my dilema I really have been having a terrible time with

bone pain for the past couple of months. This morning was the

absoluate worst. It was in everybone in my body and it was a ten. I

had an appointment with the hematologist office for blood test. I

left for the appointment in tears my pain was a ten and I was beyond

myself because of the pain. Of course when they did my labs my

hemaglobin had again dropped so I needed IV iron and aronesp. When I

got there I was still in tears so I went to one of the private rooms

rather than into the room wereabout 8 patients are getting there

chemo.

When we got there Bob found Beth one of my favorite nurses there.

They are all great but I just like Beth the best to talk to. There I

sat crying because of the pain. I asked Bob to step out when she came

in because she might respond differently if he was not there.

She is so dear, she told me that what I most needed was to get my

pain undercontrol. She suggested that I see a pain specialist as

there were other options I had not thought of such as dilaudid and or

methadone. She suggesed that I take two of the Vicoden ES every four

hours instead of just one. I really was not thinking because of the

severity of my pain. I had them with me and taking a second one did

help.

NOW MY DILEMA-IF I FIND SOMEONE WHO WILL ACCEPT ME AS A PATIENT AND

GIVE ME THE REMACADE AS DR. BAUGHMAN SUGGESTED AND NOT THINK ABOUT IT

CAUSING MY MRSA TO BECOME ACTIVE IN ADDITION TO THE CONCERN THAT ONE

COULD ALSO DEVELOP LYMPHOMA.

Today was the first time my pain had reached a 10 out of 10. My

quality of life is really the pits. I probably also have sarc in my

bonemarrow,which is causing my bone marrow to not make mostly

unhealthly RBC's and today my WBC's were also dropping.

When I had MRSA before it caused me to have 23 operations on my legs

because it attaches itself to prosthesis and there is nothing that

can remove it so they have to take out the prosthesis, then they wait

until they think it is gone and then they reoperate to put the

prosthesis in again. I had 23 surgeries. Which is like having 23

total knee operations. Unbelievable pain, kidneys trying to shut

down, depression and many other problems. I coded three times and

had flash pulmonary edema plus a few more serious complications. I am

now left with the dilema . I need your opinions. What would you do if

you were in my place. I feel like I am being forced do you choose to

die by being hung or the electric chair. Help, I just can't think.

Judy in PA