Guest guest Posted July 29, 1999 Report Share Posted July 29, 1999 Hi lea, I probably was not too clear. I have been under treatment for Auto-Immune Hepatitis for the past year. My hepatologist monitors my liver functions on a three month basis., When I had flares(fever, fatigue, joint pain, etc) between visits I would go to my primary care. She would treat the flare with prednisone and all would be well. The problem was with each flare the ailments would become less and less relieved by the prednisone, so my PCP decided to check further by sending me to a neurologist. The neurologist did an EMG and blood work. She was the one who ran the western blot. My blood showed an high Ana titer and positive western blot. Then my PCP referred me to the infectious disease and the Rheumatologist. Her reasoning was the infectious disease in case it was Lyme, and the Rheumatologist in case it was Lupus. I first saw the infectious disease and she immediately said it was Lyme. I then saw the Rheumatologist and he said it was Lyme. He had to call the Neurologist because she ran the first test, and he felt my brain was involved. She feel that Lyme is to readily diagnosed and wanted to prove that I didn't have it. She ordered an MRI and spinal tap and more blood. The MRI was ok, the spinal tap ok but I had a positive PCR. She referred me back to the rheumatologist who is treating me for the Lyme, monitoring my liver and my Ana and Sma. He also had Lyme in the past couple of years. He listens to all of my ailments and doesn't think I'm just complaining. He really fights the insurance for me. I hope this answers your questions. As to the IV. I just have to resolve myself that for the next couple of weeks that it will take a good chunk of my afternoons. Its not like I'm going to do anything anyway. How are you feeling? HI ; This is what my lyme brain is letting me understand about your doctors. You were seeing your Rheumatologist, who did not know till recently that you have Lyme but now agrees with your new PCP that you have Lyme. (Your PCP also sent you to a neurologist and an infectious disease doctor) .. Do any of your MD's treat clinically or do they all need a CDC positive Western Blot and/or ? How are you doing--hope you coming along with the IV " S. hugs, lea Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 1999 Report Share Posted July 30, 1999 HI ; I like this new color page---is it in your program or your service provider. You have explained yourself quite well and I appreciate it. Do you by chance know if your Rheumatologist needs to have a positive lyme western blot, , or PCR or does he also diagnose clinically? I am so happy you are finally on the right track. I am still very sick and since travel is difficult for me, I like to try to gather enough info before seeing an MD; also, especially, since I need to be driven. I would like to hear soon that you are doing better since many have reported coming along with IV abx. best, lea > Hi lea, > > I probably was not too clear. I have been under treatment for Auto-Immune > Hepatitis for the past year. My hepatologist monitors my liver functions on > a three month basis., When I had flares(fever, fatigue, joint pain, etc) > between visits I would go to my primary care. She would treat the flare with > prednisone and all would be well. The problem was with each flare the > ailments would become less and less relieved by the prednisone, so my PCP > decided to check further by sending me to a neurologist. The neurologist did > an EMG and blood work. She was the one who ran the western blot. My blood > showed an high Ana titer and positive western blot. Then my PCP referred me > to the infectious disease and the Rheumatologist. Her reasoning was the > infectious disease in case it was Lyme, and the Rheumatologist in case it > was Lupus. I first saw the infectious disease and she immediately said it > was Lyme. I then saw the Rheumatologist and he said it was Lyme. He had to > call the Neurologist because she ran the first test, and he felt my brain > was involved. She feel that Lyme is to readily diagnosed and wanted to prove > that I didn't have it. She ordered an MRI and spinal tap and more blood. The > MRI was ok, the spinal tap ok but I had a positive PCR. She referred me back > to the rheumatologist who is treating me for the Lyme, monitoring my liver > and my Ana and Sma. > > He also had Lyme in the past couple of years. He listens to all of my > ailments and doesn't think I'm just complaining. He really fights the > insurance for me. > > I hope this answers your questions. As to the IV. I just have to resolve > myself that for the next couple of weeks that it will take a good chunk of > my afternoons. Its not like I'm going to do anything anyway. > > How are you feeling? > > > > HI ; > > This is what my lyme brain is letting me understand about your doctors. You > > were seeing your Rheumatologist, who did not know till recently that you > have > > Lyme but now agrees with your new PCP that you have Lyme. (Your PCP also > > sent you to a neurologist and an infectious disease doctor) > > . > > Do any of your MD's treat clinically or do they all need a CDC positive > > Western Blot and/or ? > > How are you doing--hope you coming along with the IV " S. > > hugs, > > lea > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 1999 Report Share Posted July 31, 1999 Hello Lea, The color might be from my program, but I don't remember....Either McCroskery or Adler-Klein I think would diagnose clinically. both didn't see the need for all of the extra tests I went thru. I had a good day. I actually went food shopping last night. It was great to be out of the house. I'm paying this morning though. Back to bed for a while.. How are you doing? Hope you can find answers soon. best .. From: Memyo@... HI ; I like this new color page---is it in your program or your service provider. You have explained yourself quite well and I appreciate it. Do you by chance know if your Rheumatologist needs to have a positive lyme western blot, , or PCR or does he also diagnose clinically? I am so happy you are finally on the right track. I am still very sick and since travel is difficult for me, I like to try to gather enough info before seeing an MD; also, especially, since I need to be driven. I would like to hear soon that you are doing better since many have reported coming along with IV abx. best, lea > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2005 Report Share Posted September 8, 2005 Hi. Welcome to the group. Until you have a firm diagnosis, it's difficult to know the appropriate treatment. Prednisone is not recommended for fibromyalgia. Long-term and/or high-dose prednisone is not recommended for rheumatoid arthritis. If you have rheumatoid arthritis, especially markers of severe disease, the benefits of methotrexate outweigh the risks. The risks of long-term and/or high-dose prednisone outweigh the benefit. In addition, methotrexate is a rheumatoid arthritis disease-modifying agent, prednisone is not. For what reason did the neurologist put you on prednisone? Sorry that you are in the position you are. It is not uncommon to have difficulty getting a diagnosis. Not an MD I'll tell you where to go! Mayo Clinic in Rochester http://www.mayoclinic.org/rochester s Hopkins Medicine http://www.hopkinsmedicine.org [ ] doctor confusion >I suffer from constant extreme pain in my hips, shoulders and feet, > along with bad stiffness after I've been still and muscle cramps in my > legs and feet. I've seen 13 doctors and had a back surgery that > changed nothing. My labs are all normal. I've seen four > rheumatologists, two said definitely fibromyalgia and one said it's > sero-negative RA and another one just wanted to put me on an > antidepressant. I don't have tender points--it feels good to push or > rub really hard where I hurt. A neurologist tried 50 mg prednisone > which made every symptom disappear and I felt great, but the next > rheumatologist freaked out and said prednisone was insane and started > tapering me down. It's been hell. Some days I have pray constantly > just to keep myself from jumping off a roof or something. The latest > doctor wants to start methotrexate but I read about it and it said you > shouldn't take it unless your life was threatened. what gives? what > do you do when you doctors contradict each other and information you > get from various sources all say different things? I am so confused > and lost and tired and I don't know how much longer I can live like this. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2005 Report Share Posted September 8, 2005 Hi. Welcome to the group. Until you have a firm diagnosis, it's difficult to know the appropriate treatment. Prednisone is not recommended for fibromyalgia. Long-term and/or high-dose prednisone is not recommended for rheumatoid arthritis. If you have rheumatoid arthritis, especially markers of severe disease, the benefits of methotrexate outweigh the risks. The risks of long-term and/or high-dose prednisone outweigh the benefit. In addition, methotrexate is a rheumatoid arthritis disease-modifying agent, prednisone is not. For what reason did the neurologist put you on prednisone? Sorry that you are in the position you are. It is not uncommon to have difficulty getting a diagnosis. Not an MD I'll tell you where to go! Mayo Clinic in Rochester http://www.mayoclinic.org/rochester s Hopkins Medicine http://www.hopkinsmedicine.org [ ] doctor confusion >I suffer from constant extreme pain in my hips, shoulders and feet, > along with bad stiffness after I've been still and muscle cramps in my > legs and feet. I've seen 13 doctors and had a back surgery that > changed nothing. My labs are all normal. I've seen four > rheumatologists, two said definitely fibromyalgia and one said it's > sero-negative RA and another one just wanted to put me on an > antidepressant. I don't have tender points--it feels good to push or > rub really hard where I hurt. A neurologist tried 50 mg prednisone > which made every symptom disappear and I felt great, but the next > rheumatologist freaked out and said prednisone was insane and started > tapering me down. It's been hell. Some days I have pray constantly > just to keep myself from jumping off a roof or something. The latest > doctor wants to start methotrexate but I read about it and it said you > shouldn't take it unless your life was threatened. what gives? what > do you do when you doctors contradict each other and information you > get from various sources all say different things? I am so confused > and lost and tired and I don't know how much longer I can live like this. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2005 Report Share Posted September 8, 2005 Thanks so much for replying. The neurologist figured that since I had extreme stiffness after being still for any amount of time, it was a systemic inflammatory condition. The prednisone did make me feel completely normal, and after a year of trying a dozen different drugs and one back surgery that only made things worse, the vacation from pain and stiffness was so welcome. but I guess you just can't stay on it. I feel better about the methotrexate. Thanks. --- <Matsumura_Clan@...> wrote: > Hi. Welcome to the group. > > Until you have a firm diagnosis, it's difficult to > know the appropriate > treatment. > > Prednisone is not recommended for fibromyalgia. > > Long-term and/or high-dose prednisone is not > recommended for rheumatoid > arthritis. > > If you have rheumatoid arthritis, especially markers > of severe disease, the > benefits of methotrexate outweigh the risks. The > risks of long-term and/or > high-dose prednisone outweigh the benefit. In > addition, methotrexate is a > rheumatoid arthritis disease-modifying agent, > prednisone is not. > > For what reason did the neurologist put you on > prednisone? > > Sorry that you are in the position you are. It is > not uncommon to have > difficulty getting a diagnosis. > > > > Not an MD > > I'll tell you where to go! > > Mayo Clinic in Rochester > http://www.mayoclinic.org/rochester > > s Hopkins Medicine > http://www.hopkinsmedicine.org > > > [ ] doctor confusion > > > >I suffer from constant extreme pain in my hips, > shoulders and feet, > > along with bad stiffness after I've been still and > muscle cramps in my > > legs and feet. I've seen 13 doctors and had a > back surgery that > > changed nothing. My labs are all normal. I've > seen four > > rheumatologists, two said definitely fibromyalgia > and one said it's > > sero-negative RA and another one just wanted to > put me on an > > antidepressant. I don't have tender points--it > feels good to push or > > rub really hard where I hurt. A neurologist tried > 50 mg prednisone > > which made every symptom disappear and I felt > great, but the next > > rheumatologist freaked out and said prednisone was > insane and started > > tapering me down. It's been hell. Some days I > have pray constantly > > just to keep myself from jumping off a roof or > something. The latest > > doctor wants to start methotrexate but I read > about it and it said you > > shouldn't take it unless your life was threatened. > what gives? what > > do you do when you doctors contradict each other > and information you > > get from various sources all say different things? > I am so confused > > and lost and tired and I don't know how much > longer I can live like this. > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2005 Report Share Posted September 8, 2005 Thanks so much for replying. The neurologist figured that since I had extreme stiffness after being still for any amount of time, it was a systemic inflammatory condition. The prednisone did make me feel completely normal, and after a year of trying a dozen different drugs and one back surgery that only made things worse, the vacation from pain and stiffness was so welcome. but I guess you just can't stay on it. I feel better about the methotrexate. Thanks. --- <Matsumura_Clan@...> wrote: > Hi. Welcome to the group. > > Until you have a firm diagnosis, it's difficult to > know the appropriate > treatment. > > Prednisone is not recommended for fibromyalgia. > > Long-term and/or high-dose prednisone is not > recommended for rheumatoid > arthritis. > > If you have rheumatoid arthritis, especially markers > of severe disease, the > benefits of methotrexate outweigh the risks. The > risks of long-term and/or > high-dose prednisone outweigh the benefit. In > addition, methotrexate is a > rheumatoid arthritis disease-modifying agent, > prednisone is not. > > For what reason did the neurologist put you on > prednisone? > > Sorry that you are in the position you are. It is > not uncommon to have > difficulty getting a diagnosis. > > > > Not an MD > > I'll tell you where to go! > > Mayo Clinic in Rochester > http://www.mayoclinic.org/rochester > > s Hopkins Medicine > http://www.hopkinsmedicine.org > > > [ ] doctor confusion > > > >I suffer from constant extreme pain in my hips, > shoulders and feet, > > along with bad stiffness after I've been still and > muscle cramps in my > > legs and feet. I've seen 13 doctors and had a > back surgery that > > changed nothing. My labs are all normal. I've > seen four > > rheumatologists, two said definitely fibromyalgia > and one said it's > > sero-negative RA and another one just wanted to > put me on an > > antidepressant. I don't have tender points--it > feels good to push or > > rub really hard where I hurt. A neurologist tried > 50 mg prednisone > > which made every symptom disappear and I felt > great, but the next > > rheumatologist freaked out and said prednisone was > insane and started > > tapering me down. It's been hell. Some days I > have pray constantly > > just to keep myself from jumping off a roof or > something. The latest > > doctor wants to start methotrexate but I read > about it and it said you > > shouldn't take it unless your life was threatened. > what gives? what > > do you do when you doctors contradict each other > and information you > > get from various sources all say different things? > I am so confused > > and lost and tired and I don't know how much > longer I can live like this. > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2005 Report Share Posted September 9, 2005 I am sorry that your going through so much pain. It is frustrating waiting on the right diagnose, and the right treatment. Your rheumy should be able to help you in the best for you. It is scary with all these different meds, and the side effects that go along with them. I'm sorry about the Prednisone, you do have to be very careful tapering off it slowly. It makes me feel the same way. Hang in there, and know I'm here if you need to talk. Hugs, Tawny > I suffer from constant extreme pain in my hips, shoulders and feet, > along with bad stiffness after I've been still and muscle cramps in my > legs and feet. I've seen 13 doctors and had a back surgery that > changed nothing. My labs are all normal. I've seen four > rheumatologists, two said definitely fibromyalgia and one said it's > sero-negative RA and another one just wanted to put me on an > antidepressant. I don't have tender points--it feels good to push or > rub really hard where I hurt. A neurologist tried 50 mg prednisone > which made every symptom disappear and I felt great, but the next > rheumatologist freaked out and said prednisone was insane and started > tapering me down. It's been hell. Some days I have pray constantly > just to keep myself from jumping off a roof or something. The latest > doctor wants to start methotrexate but I read about it and it said you > shouldn't take it unless your life was threatened. what gives? what > do you do when you doctors contradict each other and information you > get from various sources all say different things? I am so confused > and lost and tired and I don't know how much longer I can live like this. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2005 Report Share Posted September 9, 2005 I am sorry that your going through so much pain. It is frustrating waiting on the right diagnose, and the right treatment. Your rheumy should be able to help you in the best for you. It is scary with all these different meds, and the side effects that go along with them. I'm sorry about the Prednisone, you do have to be very careful tapering off it slowly. It makes me feel the same way. Hang in there, and know I'm here if you need to talk. Hugs, Tawny > I suffer from constant extreme pain in my hips, shoulders and feet, > along with bad stiffness after I've been still and muscle cramps in my > legs and feet. I've seen 13 doctors and had a back surgery that > changed nothing. My labs are all normal. I've seen four > rheumatologists, two said definitely fibromyalgia and one said it's > sero-negative RA and another one just wanted to put me on an > antidepressant. I don't have tender points--it feels good to push or > rub really hard where I hurt. A neurologist tried 50 mg prednisone > which made every symptom disappear and I felt great, but the next > rheumatologist freaked out and said prednisone was insane and started > tapering me down. It's been hell. Some days I have pray constantly > just to keep myself from jumping off a roof or something. The latest > doctor wants to start methotrexate but I read about it and it said you > shouldn't take it unless your life was threatened. what gives? what > do you do when you doctors contradict each other and information you > get from various sources all say different things? I am so confused > and lost and tired and I don't know how much longer I can live like this. Quote Link to comment Share on other sites More sharing options...
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