Guest guest Posted January 16, 2009 Report Share Posted January 16, 2009 Carla, that sounds enormously difficult, my sympathies on the loss of your husband. Before your appt maybe it would help to write down a timeline of your symptoms for your rheumatologist along with a list of questions. That always helps me stay focused. You could always drop it off before your appt too. I hope you get some answers soon, Kate F ________________________________ From: Carla Benoist <mom2harley@...> Sent: Friday, January 16, 2009 11:16:28 AM Subject: [ ] After long silence Hi all. Probably time I stepped out of de-nial and started thinking about treatments again. When I was diagnosed (3 years ago ~~?) it was by symptoms. I was told I was -- I think -- serum-negative (? is that right, at the time I thought she said Zero negative.... . ). I haven't had any RA specific bloodwork since then. My rheumy is convinced that aI never had Lyme disease, but had RA all along-- if she's right, it's amazing how much relief I had from the heavy antibiotics treatment I got back then (5 or 6 years ago). Before going with the RA diagnosis I was given a choice of treating as if it were Lyme with a heavy antibiotic 2-year protocol or treating as if it was RA. I had a lot of pressure to go with the RA and to this day I'm not l00% sure that I didn't make a mistake or that I don't have both going on. In the meantime my husband died of unsuspected and undiagnosed Babesia. Feb. 11 2008 I had surgery to remove a large rheumatoid nodule on the outside edge of my left foot. Almost a year later, we are still trying to get that 100% healed. Until it is healed, I'm not on any medication at all. My wrists are terrible, particularly my left one and I have been alternating between flares in my left and right shoulders. Since last Saturday, it's been my left and the pain level has been jaw grinding and debilitating- - I've hardly been able to sleep. I was on Enbril for a short while (year -- year and a half) but it was very on and off as I could never stay on it for more than 2 months without getting an infection somewhere. I suppose that when I see her in February, I should ask to be retested And to have it explained more thoroughly to me. I feel like I'm just letting myself slip through the cracks and becoming non- functional. Besides, it hurts. Advice welcome..Thx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2009 Report Share Posted January 17, 2009 Hi Carla - please accept my deepest of sympathies at the loss of your husband. Since he passed from Babesia and you've been treated for Lyme Disease, would it be unreasonable to contact an infectious disease doctor since both of those diagnosis' are tick related? Perhaps they could shed some light on the reason your foot is not healing properly as well. Is your PC able to give you anything for the pain while you are waiting for your Rheumy appt? Have you called your Rheumy and asked to be put on the cancellation list? That way they could call you if something comes up sooner than your February appointment. Please keep us posted - we care. Best of luck to you.....Doreen > > Hi all. Probably time I stepped out of de-nial and started > thinking about treatments again. > > When I was diagnosed (3 years ago ~~?) it was by symptoms. I was > told I was -- I think -- serum-negative (? is that right, at the > time I thought she said Zero negative..... ). I haven't had any RA > specific bloodwork since then. My rheumy is convinced that aI > never had Lyme disease, but had RA all along-- if she's right, it's > amazing how much relief I had from the heavy antibiotics treatment > I got back then (5 or 6 years ago). Before going with the RA > diagnosis I was given a choice of treating as if it were Lyme with > a heavy antibiotic 2-year protocol or treating as if it was RA. I > had a lot of pressure to go with the RA and to this day I'm not > l00% sure that I didn't make a mistake or that I don't have both > going on. > > In the meantime my husband died of unsuspected and undiagnosed > Babesia. > > Feb. 11 2008 I had surgery to remove a large rheumatoid nodule on > the outside edge of my left foot. Almost a year later, we are > still trying to get that 100% healed. Until it is healed, I'm not > on any medication at all. My wrists are terrible, particularly my > left one and I have been alternating between flares in my left and > right shoulders. Since last Saturday, it's been my left and the > pain level has been jaw grinding and debilitating-- I've hardly > been able to sleep. > > I was on Enbril for a short while (year -- year and a half) but it > was very on and off as I could never stay on it for more than 2 > months without getting an infection somewhere. > > I suppose that when I see her in February, I should ask to be > retested And to have it explained more thoroughly to me. I feel > like I'm just letting myself slip through the cracks and becoming > non-functional. Besides, it hurts. Advice welcome..Thx > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2009 Report Share Posted January 18, 2009 Carla, I am sorry to hear about your husband. I have been treated for RA for a couple of years or so with biologicals and Methotrexate. I am also sero-negative.My Rhu told me that I might not ever convert to sero-positive. The drugs are help. The sooner they can get the treatments started the better it is supposed to be as far as causing irreparable damage. Lets us know what your Rhu has to say Heidibug On Sat, Jan 17, 2009 at 7:06 AM, Mimi <mimi212@...> wrote: > Hi Carla - please accept my deepest of sympathies at the loss of your > husband. Since he passed from Babesia and you've been treated for Lyme > Disease, would it be unreasonable to contact an infectious disease > doctor since both of those diagnosis' are tick related? Perhaps they > could shed some light on the reason your foot is not healing properly > as well. > > Is your PC able to give you anything for the pain while you are > waiting for your Rheumy appt? Have you called your Rheumy and asked to > be put on the cancellation list? That way they could call you if > something comes up sooner than your February appointment. > > Please keep us posted - we care. Best of luck to you.....Doreen > > > > > > Hi all. Probably time I stepped out of de-nial and started > > thinking about treatments again. > > > > When I was diagnosed (3 years ago ~~?) it was by symptoms. I was > > told I was -- I think -- serum-negative (? is that right, at the > > time I thought she said Zero negative..... ). I haven't had any RA > > specific bloodwork since then. My rheumy is convinced that aI > > never had Lyme disease, but had RA all along-- if she's right, it's > > amazing how much relief I had from the heavy antibiotics treatment > > I got back then (5 or 6 years ago). Before going with the RA > > diagnosis I was given a choice of treating as if it were Lyme with > > a heavy antibiotic 2-year protocol or treating as if it was RA. I > > had a lot of pressure to go with the RA and to this day I'm not > > l00% sure that I didn't make a mistake or that I don't have both > > going on. > > > > In the meantime my husband died of unsuspected and undiagnosed > > Babesia. > > > > Feb. 11 2008 I had surgery to remove a large rheumatoid nodule on > > the outside edge of my left foot. Almost a year later, we are > > still trying to get that 100% healed. Until it is healed, I'm not > > on any medication at all. My wrists are terrible, particularly my > > left one and I have been alternating between flares in my left and > > right shoulders. Since last Saturday, it's been my left and the > > pain level has been jaw grinding and debilitating-- I've hardly > > been able to sleep. > > > > I was on Enbril for a short while (year -- year and a half) but it > > was very on and off as I could never stay on it for more than 2 > > months without getting an infection somewhere. > > > > I suppose that when I see her in February, I should ask to be > > retested And to have it explained more thoroughly to me. I feel > > like I'm just letting myself slip through the cracks and becoming > > non-functional. Besides, it hurts. Advice welcome..Thx > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2009 Report Share Posted January 18, 2009 Carla, I'm very sorry about the death of your husband. How about a trip to s Hopkins so that they can figure out your diagnoses and the best treatment for you? Not an MD On Fri, Jan 16, 2009 at 11:16 AM, Carla Benoist <mom2harley@...> wrote: > Hi all. Probably time I stepped out of de-nial and started thinking > about treatments again. > > When I was diagnosed (3 years ago ~~?) it was by symptoms. I was > told I was -- I think -- serum-negative (? is that right, at the time > I thought she said Zero negative..... ). I haven't had any RA > specific bloodwork since then. My rheumy is convinced that aI never > had Lyme disease, but had RA all along-- if she's right, it's amazing > how much relief I had from the heavy antibiotics treatment I got back > then (5 or 6 years ago). Before going with the RA diagnosis I was > given a choice of treating as if it were Lyme with a heavy antibiotic > 2-year protocol or treating as if it was RA. I had a lot of pressure > to go with the RA and to this day I'm not l00% sure that I didn't > make a mistake or that I don't have both going on. > > In the meantime my husband died of unsuspected and undiagnosed > Babesia. > > Feb. 11 2008 I had surgery to remove a large rheumatoid nodule on the > outside edge of my left foot. Almost a year later, we are still > trying to get that 100% healed. Until it is healed, I'm not on any > medication at all. My wrists are terrible, particularly my left one > and I have been alternating between flares in my left and right > shoulders. Since last Saturday, it's been my left and the pain > level has been jaw grinding and debilitating-- I've hardly been able > to sleep. > > I was on Enbril for a short while (year -- year and a half) but it > was very on and off as I could never stay on it for more than 2 > months without getting an infection somewhere. > > I suppose that when I see her in February, I should ask to be > retested And to have it explained more thoroughly to me. I feel like > I'm just letting myself slip through the cracks and becoming non- > functional. Besides, it hurts. Advice welcome..Thx Quote Link to comment Share on other sites More sharing options...
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