Guest guest Posted October 19, 1999 Report Share Posted October 19, 1999 Hi Your story is encouraging! I think we all know by now that we can't push ourselves too hard when we are feeling better...but it' hard not to. I'm very happy that you are again improving! Congrats on setting your wedding date! I didn't know that you were a professional singer...where do you appear? Maybe we can catch you some time! Continued Good Luck! Joan LI NY 1st Known Deer Tick Bites & Sx: '85 1st (Neg): '89 Continued Sx & Neg. s: '90-'99 1st WB: 4+ Specific Bands: 4/99 Late Neuro-LD Dx: 6/99 From: Scully <jscully@...> Hello friends -- This is the other (From NJ). I was doing so well back in August that my LLMD and I were planning on dropping one of my abx (I'm on 1000 mg Biaxin and 500 of Ceftin, and we were going to drop the Ceftin after 3 weeks and then do Biaxin for 3 more weeks, and then start to taper it off too). I felt like a normal person most of the time! Then I had a very big stress due to a major psychiatric illness suffered by a friend of mine. I lost a lot of sleep and suffered a lot of mental anguish for several days, and all my symptoms came flooding back! My MD told me that she doesn't think Lyme is ever really gone, just in remission, and that anytime I have a compromise to my immune system, it will come back again. Certainly many of us have experienced this. I continued with my medication as it was at the time, and now I'm almost back to where I was before the crisis. I cycled through neuro symptoms, arthritic symptoms, and now fatigue, but I seem to be pulling out of it. You also must add me to the list of folks who suddenly got better once they stopped taking supplements! I was a true believer in them and recommended them to many people, because they seemed to have really helped me in the beginning. But I must admit that once I stopped them (due to being broke and just being sick of taking a million pills a day) I had a sudden improvement of lingering symptoms. I wonder if they helped at first by repairing and strengthening various parts of my body that were infected, but then helped feed the spirochetes and keep them from being suppressed once the rest of my was fixed? I am certain that they helped my brain fog and joint pain before I began my current abx regimen, so I am very confused! In closing, other than my friend going off the deep end, things have been great. My beloved fiance is moving in with me, we've set a date (5/6/2000) for our wedding, and my singing career is tootling along at an undemanding pace. So things are basically good here in beautiful NJ. Jean Send to -Offtopiconelist messages unrelated to lyme, please. /archive/lyme-aid /archives.cgi/Lyme-Documents To unsubscribe, send email to -unsubscribeonelist You may substitute " subscribe " , or " digest " or " normal " for the word " unsubscribe " ( " normal " is the opposite of " digest " ). Leave blank both the message and subject header. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 1999 Report Share Posted October 19, 1999 > Wow Ann... > Glad you're doing so well! Didn't know you were off of all meds...what > do you do or take when you have a flare? Which abx helped you into > remission? > > Don't worry about the panic attacks and keep up the good work! > Joan > LI NY Hi Joan, To answer your question -- when I have a flare I just tough it out. I'm pretty stubborn and I made up my mind a long time ago I wasn't going to let this disease get me. However, when my body says ... lay down stupid ... I do! If I have to take a few days off work, I do and I don't allow myself to feel guilty about it. And I also take Fiorinol for the horrendous headaches I get. The arthritis is manageble with Advil. I'm used to the " fog " so I just go with it. :-) When I was first diagnosed in 1990 I was put on three months of oral abx ... not sure what it was. Then a few months after that I did the IV Rocephin routine but only for two weeks. (I'm allergic to it.) Then I did another three months of oral Doxy. Then a few years after that I did Biaxin for six weeks. I consider myself very lucky to be in remission with flares that I can handle. I know many, many of you don't have that luxury and I truly wish you all did!!! Now if I could just get rid of the panic attacks I'd be all set. LOL!!! If anyone has a magic wand for those, let me know. Ann (TX) Infected in MI, the state that doesn't have Lyme, in 1990. I'm off all meds and still have flares every 3 - 6 months. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 1999 Report Share Posted October 20, 1999 Reid, I get this too to some degree. It's called agoraphobia. (I'm not positive on the spelling.) It translates to " fear of the village " . For some reason the thought of fearing the village just cracks me up. =) Robynn Re: [Lyme-aid] How are you? > From: RMcmur3194@... > > i can relate to " lay down dummy " also i suffer ferom panic attacks.....my > shrink and therapist say that it is normal for those with a chronic > illness......since we are unable to control our health we also lose control > or think we do of other things.....also since we azre in pain alot of times > we want/need to stay somewhere safe(home ect) that is my biggest problem is > leaving my house......i get very uncomfortable.....shrink has me on anti > aneity meds also... > Reid Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2006 Report Share Posted July 10, 2006 Hey , I have been wondering about you. How are you doing? Do you have any news yet about your hip replacement? I have decided to start a campaign to find one to do my son's operation, and I have a list of Orthopaedic Doctors that I got off the internet. One of them is at Southern Illinois School of Medicine. His name is D Gordon , MD. I plan to write each and every one of these until I get a reply. I thought you might be interested in this guy. If and when I find something out I will let you know. I you should come accross someone in the west, let me know. I wish you and your family all the best. Janet in Ca Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2006 Report Share Posted July 11, 2006 Hi Janet, I'm doing the same (which is not that good LOL). I am FINALLY meeting with a surgeon my rheumy suggested his name is Dr. Stulberg out of Northwestern University Hospital in the city. I am keeping my fingers crossed and trying to make a good case for myself. My rheumy said that if the surgeon doesn't think it's a good idea to do the surgery that I should ask him what he thinks I should do and does he think it is better for me to continue popping vicadin up to 4 a day rather than just get surgery and get it done with. My rheumy says in the end an early hip replacement is better than looking for a liver donor down the road. Best of luck to your son, and keep me posted! Love, ~ cameronparkmom@... wrote: Hey , I have been wondering about you. How are you doing? Do you have any news yet about your hip replacement? I have decided to start a campaign to find one to do my son's operation, and I have a list of Orthopaedic Doctors that I got off the internet. One of them is at Southern Illinois School of Medicine. His name is D Gordon , MD. I plan to write each and every one of these until I get a reply. I thought you might be interested in this guy. If and when I find something out I will let you know. I you should come accross someone in the west, let me know. I wish you and your family all the best. Janet in Ca Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2006 Report Share Posted July 12, 2006 Hello , I am sorry to hear you have not had more progress that this so far. I found a web site called Joint Surgeons of Sacramento that lists all the alternatives to hip replacement as well as what to expect when you have one, and a good description of the 2 kinds available now , just in case you want to be a little more prepared when you go see your surgeon. What struck my eye as their only alternative for someone under 40 years old is a hip fusion. They say that it does away with the pain immediately. What they don't explain is whether it can be undone when your are over 40 years old to have a total hip replacement. Maybe you can find out at your appointment. God Bless you and take care. Janet in Ca Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2006 Report Share Posted July 16, 2006 Janet, Can you tell me what a hip fusion is exactly? That sounds scary. Love, cameronparkmom@... wrote: Hello , I am sorry to hear you have not had more progress that this so far. I found a web site called Joint Surgeons of Sacramento that lists all the alternatives to hip replacement as well as what to expect when you have one, and a good description of the 2 kinds available now , just in case you want to be a little more prepared when you go see your surgeon. What struck my eye as their only alternative for someone under 40 years old is a hip fusion. They say that it does away with the pain immediately. What they don't explain is whether it can be undone when your are over 40 years old to have a total hip replacement. Maybe you can find out at your appointment. God Bless you and take care. Janet in Ca Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2006 Report Share Posted July 17, 2006 , It sounds scarey to me too. I couldn't find a description of it online. It sounds to me as if they may fuse the femur to the hip without using ball and you probably can't move your leg. That would not be real desirable but, as they said, it would do away with the pain immediately. By the way, I found a walking cane on Overstock.com today that has a 3 legged stool that folds out. It costs under $20, so I am going to buy one. The perfect thing for when we have to walk long distances and there is no place to rest. If it holds me up I'll let you know. If it doesn't, it will probably kill me. God I have to fall. Love ya, Janet in Ca Quote Link to comment Share on other sites More sharing options...
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