Re: I need your opinion

[Guest guest]

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.

Judy,

Your MD's are correct in being concerned about the MRSA. I've had the infection in my sinuses, and we knocked it out with antibiotics. That was several years ago, and I've not been bothered since.

As for the Remicade-- I know that lymphoma and bone cancer risks can be increased from 4% of the total population TOTAL POPULATION-- NOT JUST US-- to 7%. Yes, it's an increased risk. I know for sure I wouldn't be alive today had I not taken the chance with the Remicade.

I do want everyone to realize that it won't be a "fix-all". It may help with the bone pain, the sarcoid induced arthritis pain-- and it does help with the brain fog. I'm clearer thinking than I was-- and I'm still in a fog bank most of the time-- but at least I'm not in the pain I was in. It has also made it so that now that I'm at maximum dose 10mg/kg-- that my lymphnodes aren't screaming at me for the last week prior to the next infusion. (I get it every 28 days.)

As for the pain you are in right now-- yes, your MD's need to get you under control . Duregisic patches (Fentynal), methadone, Oramorph- whatever-- if Vicodin ES at 2 every 4hrs works- talk to the MD-- let him know you are increasing it-- and have him write the script so that you (and he) don't get in hot water over how often you're having to refill it.

Personally, and you all know that I was self-medicating to the point of dependency- borderline addiction (clean now for 15 yrs) that if I can find a way to stay the hell away from pain meds-- I will.

What has worked for me is the MSM powder or pills if you can't do the powder, and calcium/magnesium supplements. Also-- if you are on ANY immunosupressant-- you should be taking 1mg Folic Acid. Everyone of the the drugs we need have a side effect of blowing out your B vitamins.

Hydrate, hydrate, hydrate. Get rid of the sodas, caffeine, and alcohol. They all dehydrate--- so it's insult to injury. Get away from dairy-- and from refined sugars. These all add inflammation and nerve pain. Read the labels, and if it has High Fructose Corn Syrup-- put it back on the shelf. Bad, bad stuff.

Make sure you are washing your fruits and veges, so that if there is any residue from pesticides, you get rid of them. (Most of them are water soluble, and have a life span of less than 2 wks in the field-- so we honestly don't get much by the time stuff is harvested.

If you have guided meditation tapes that can walk you into a deep state of relaxation-- use them!!! They work better that way then they do as bookends.

Realize that the pain you are feeling is something that you've experienced before, and that you have the strength to get through it. It's when we start stressing about the pain-- that we tell our bodies to tense up and then we hurt more--so we end up in greater pain. I literally tell myself that "I know this feeling, and I'm safe." "I am safe." See those knots in your body loosing up, and let yourself just look at them- and know you are still safe.

I know it sounds simplistic== and it is. But it works. You have the power to breathe in healing energy you need to heal yourself. You are safe, and you are ok.

I do hope this helps, and that you will be getting the medication you need.

Tracie

NS Co-owner/moderator

Check out AOL Money Finance's list of the hottest products and top money wasters of 2007.

[Guest guest]

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.

Judy,

Your MD's are correct in being concerned about the MRSA. I've had the infection in my sinuses, and we knocked it out with antibiotics. That was several years ago, and I've not been bothered since.

As for the Remicade-- I know that lymphoma and bone cancer risks can be increased from 4% of the total population TOTAL POPULATION-- NOT JUST US-- to 7%. Yes, it's an increased risk. I know for sure I wouldn't be alive today had I not taken the chance with the Remicade.

I do want everyone to realize that it won't be a "fix-all". It may help with the bone pain, the sarcoid induced arthritis pain-- and it does help with the brain fog. I'm clearer thinking than I was-- and I'm still in a fog bank most of the time-- but at least I'm not in the pain I was in. It has also made it so that now that I'm at maximum dose 10mg/kg-- that my lymphnodes aren't screaming at me for the last week prior to the next infusion. (I get it every 28 days.)

As for the pain you are in right now-- yes, your MD's need to get you under control . Duregisic patches (Fentynal), methadone, Oramorph- whatever-- if Vicodin ES at 2 every 4hrs works- talk to the MD-- let him know you are increasing it-- and have him write the script so that you (and he) don't get in hot water over how often you're having to refill it.

Personally, and you all know that I was self-medicating to the point of dependency- borderline addiction (clean now for 15 yrs) that if I can find a way to stay the hell away from pain meds-- I will.

What has worked for me is the MSM powder or pills if you can't do the powder, and calcium/magnesium supplements. Also-- if you are on ANY immunosupressant-- you should be taking 1mg Folic Acid. Everyone of the the drugs we need have a side effect of blowing out your B vitamins.

Hydrate, hydrate, hydrate. Get rid of the sodas, caffeine, and alcohol. They all dehydrate--- so it's insult to injury. Get away from dairy-- and from refined sugars. These all add inflammation and nerve pain. Read the labels, and if it has High Fructose Corn Syrup-- put it back on the shelf. Bad, bad stuff.

Make sure you are washing your fruits and veges, so that if there is any residue from pesticides, you get rid of them. (Most of them are water soluble, and have a life span of less than 2 wks in the field-- so we honestly don't get much by the time stuff is harvested.

If you have guided meditation tapes that can walk you into a deep state of relaxation-- use them!!! They work better that way then they do as bookends.

Realize that the pain you are feeling is something that you've experienced before, and that you have the strength to get through it. It's when we start stressing about the pain-- that we tell our bodies to tense up and then we hurt more--so we end up in greater pain. I literally tell myself that "I know this feeling, and I'm safe." "I am safe." See those knots in your body loosing up, and let yourself just look at them- and know you are still safe.

I know it sounds simplistic== and it is. But it works. You have the power to breathe in healing energy you need to heal yourself. You are safe, and you are ok.

I do hope this helps, and that you will be getting the medication you need.

Tracie

NS Co-owner/moderator

Check out AOL Money Finance's list of the hottest products and top money wasters of 2007.

[Guest guest]

Judy, did Dr. Baughman know about your MRSA? maybe you can leave a message for him and see what his opinion is... Sorry, that's all I can give for any help. But my prayers are with you, sweetie, you've been through so much and my heart goes out to you. Do something for that pain and go to that pain clinic. Noone should go without some pain management. soft hugs S."rjbasso@..." wrote: 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

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[Guest guest]

Judy, did Dr. Baughman know about your MRSA? maybe you can leave a message for him and see what his opinion is... Sorry, that's all I can give for any help. But my prayers are with you, sweetie, you've been through so much and my heart goes out to you. Do something for that pain and go to that pain clinic. Noone should go without some pain management. soft hugs S."rjbasso@..." wrote: 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

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