Guest guest Posted March 20, 1999 Report Share Posted March 20, 1999 Dear Pat: You are so sweet to help out. Please do continue welcome. Call yourself CO-Moderator, Welcoming Committee, whatever you like. My hands are in really bad shape. On Friday I had to take a cab -(I live in the suburbs-so this felt wierd. ) to the dermatologist. He wanted to put me on oral predisone for a few weeks to get things under control and re-prescribed something new to me-Zinc paste over the Bactroban, and the Psorcon or Ultravate on top. I never used the Zinc paste before. Since I am going on Monday to NYC - Columbia to the rheumatologist, I knew it would not be good to have any systemic cortisone until after he did my blood work and got a look at how I am doing on the Arava - it has only been two weeks so far. The effects of the Enbrel wore off so fast -- like in four days. Now the pain in the sacroiliac, shoulders, fingers, total hands, right ankle is so bad that I have had to switch back to 75 Duragesic Patch. I still have breakthrough pain at times -- like in the am -- so I add Tylenol in then. It is the worst flare I have ever had. The Sjogrens was so bad a few days ago, that I woke up choking on my tongue in the night. Most foods were making me gag, because they would not slide down all the way, so I switched to a liquid diet -- soup and such. In short I am a mess. Luckily, using the Salagen tablets every four hours along with Humibid has made the dry mouth less dry and tolerable. My hands are even more painful since the doctor injected locally kenalog into the worst open sores on the five worst finger tips/thumbs. I am also on an antibiotic. The weird rash that is so itchy that I have all over he said is folliculitis and should clear up when the rheumatologist gives me the steroids either by injection or pills. Typing all this out made me exhausted, My love and support to you all, I am sorry that I haven't been able to respond to each and every query lately, but I know you'll hang on without me just fine with our two great co-moderators. God Bless you all, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 1999 Report Share Posted March 20, 1999 Hi , Please forget about anything else but getting yourself better. My thoughts are with you daily . Kit Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 1999 Report Share Posted March 23, 1999 Dear , I have been out of the loop for several weeks, and just caught up on my email. I hope that you are doing better.......my thoughts are with you. Trish Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 1999 Report Share Posted October 15, 1999 In a message dated 10/15/99 9:16:18 PM, Namkrats3@... writes: <<I haven't seen (or I may have missed) any recent postiings from: Dabs, , Fransea, , Jane, both Jeans, Patty, , both Connies & Val. How are you guys doing???>> Hi Joan I have been so busy with PT, acupuncture/massage, and doctors appointments that I haven't written to anyone! I am gaining muscle strength and improving my balance with PT! I have had two sessions of acupuncture and massage. The acupuncture is weird, but not all that uncomfortable. The massage is heavenly! I have noticed that I can move my legs better, the muscle releases and reflexology appears to be helping. Saw my Lyme Doc. and now I am on Biaxin (1,000 mg.), Plaquinil (400mg.), and Doxycycline (300 mg.). I don't want to jinx myself, but I am beginning to " feel " more! In fact I got used to walking with reduced sensation, and now I have to learn to walk with increased sensation! GO figure! My Lyme doctor looked at me and said... Lyme is a horrible disease... Yes he is one of the " biggies " in the field! Today I met with my neurologist. We reviewed my cervical MRI and EMG... Well, according to the MRI I should be in severe pain, with little to no range of motion... NOT! I have no doubt that there is neck involvement, but it can't be that serious! Even the results of the EMG showed mostly normal nerve responses, and those that weren't were mildly effected... If my spinal cord is being flattened... how could the EMG be basically normal? I don't understand. Either does my neurologist... she just kept shaking her head! LOL On top of that she sees that physically I have improved since I saw her on 9/17! My case is really a puzzle... Personally I don't care so long as the pieces come together! (<: I feel as though I am finally on the road to recovery... It is a long road indeed! I will try to keep you posted... I am far from well, but I have renewed hope! Take Care! {{hugs}} Jane CT Don't remember a tick bite! Live in endemic area. Flu Like Symptoms March 23, 1999 7 days of Amoxy beginning of April. for sinus infection 10 days Amoxy for Strep A April 30-May 10. May 14 Severe Fatigue set in with Fevers and Aches. Doctor suspected Lyme and prescribed 30 Days Doxy. ELISA: Negative Saw LLMD June 24... 30 days Tetracycline Western Blot: Equivocal (4 out of 5 bands for Lyme +) Babesia Test: Negative August Ceftin (caused Lyme bacteria to bleb) Full Blown Neuro-Lyme September Amoxycillin and Doxycycline October Biaxin, Doxycycline, and Plaquinil Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 1999 Report Share Posted October 15, 1999 I haven't seen (or I may have missed) any recent postiings from: Dabs, , Fransea, , Jane, both Jeans, Patty, , both Connies & Val. How are you guys doing??? :-))) Joan 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 1999 Report Share Posted October 15, 1999 In a message dated 10/15/99 4:16:05 PM EDT, Namkrats3@... writes: << I haven't seen (or I may have missed) any recent postiings from: Dabs, , Fransea, , Jane, both Jeans, Patty, , both Connies & Val. How are you guys doing??? >> Hi {{{ JOAN }}} So funny that you sent this email today. I have been thinking about you all day . Wondering how your doing and thinking about the same thing you were,about where a few of us " oldtimers " have been . I guess we're all feeling pretty lousy at the same time. Its my 6th week on IV doxy and I think this week has been the worse. Been having alot of neuro herxes. Bad headaches and dizziness and just Yukky feeling. I have been skimming through mail here once ina while, but to tell you the truth, I just can't spend too much time here or write any posts b'cuz looking at the screen makes me crosseyed. Theres nothing worse than a dizzy crosseyed woman with a headache !!! LOL ... Hey , Lets look at it this way.. we'll probably all get better at the same time and be up reading mail till midnight everynight when we all come back with a bunch of stuff to catch up on ! : ) I hope your feeling better. Anything new going on? You know, I read one of your posts that mentioned a support group on the island. Is it near Great Neck? Maybe I'll join you one night, If newcomers are welcomed.I'm in Queens and travel to the island all the time. All of my docs are there. Let me know when you have time okay . I know that Val has a support group started in Manhattan, I'd like to pop up there too. Hey maybe we'll even get to meet in person : ) Who knows ! Keep in touch , hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 1999 Report Share Posted October 15, 1999 Hi Joan ... this is doing okay!! Went to the Texas/OU game in Dallas last weekend and had to take a Xanax ... WAY too many people and I had a dandy panic attack. But the meds. worked and all was well. Thanks so much for asking ... you're sweet to think of us!! :-) Ann (TX) Infected in MI in 1990. Am off all meds and still have flares every 3 - 6 months. (But hanging in there.) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 1999 Report Share Posted October 15, 1999 Hi Joan, Thanks for asking about me........(Connie in NWNJ), I'm teaching and coaching field hockey.......some days putting in 12-13 hour days......this stress has caused me to relapse.......so I am on Flagyl........after about two weeks, my teeth nerve pain has subsided, but the joint pain is still bothering me........but I'm coping, and pushing myself....(I know I shouldn't be doing that) but have to until hockey is over. When the fall coaching season is over, I plan on returning to the vitamin/mineral drips, I was getting over the summer......I had been in total remission..........I believe, I can get there again........I return to my LLMD November 12 for some more bloodwork, and to determine what steps to take next...........I'm sorry I haven't posted, I usually collapse when I get home, feed my two dogs, and go to bed...........looking forward to being able to talk to everyone again...........How are you Joan??? Thanks again for asking about us..........Connie nwnj Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 1999 Report Share Posted October 15, 1999 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 1999 Report Share Posted October 15, 1999 Lovey, Maybe you are thinking about the house's summer vacation, I think they usually end on Memorial weekend through Sept or something like that. what ever I can do from land (45 minutes from D.C) , let me know and I am more than willing. If that means driving to D.C. to get the permit to march, or whatever, let me know. Thanks Vicki Re: [Lyme-aid] How are you? >From: lovey38@... > >Hi, Connie, its Lovey in FL. I posted a response to on the >LymeNet Flash board a few days ago re Flagyl http://www2.lymenet.org >click on Flash and scroll to find it. We are also really serious about >Marching On Washington and need someone in each state/area to help out >with some responsibility. I guess I need to post this info to onelist >announce. Anyway, if you know of any support groups/state associations, >please send me their web addresses. Can any of you here tell me why >the month of May sticks in my mind for this MOW. When does Congress or >Senate/House reconvene? Connie, I cant see how you can hold you head up >long enough to type anything. Your job is so psysical! I'll say a >little prayer for you. Lovey > >On Fri, 15 Oct 1999 19:08:58 -0700 ConnieK <conniek@...> writes: >> From: ConnieK <conniek@...> >> >> Hi Joan, >> Thanks for asking about me........(Connie in NWNJ), I'm teaching and >> coaching field hockey.......some days putting in 12-13 hour >> days......this >> stress has caused me to relapse.......so I am on Flagyl........after >> about >> two weeks, my teeth nerve pain has subsided, but the joint pain is >> still >> bothering me........but I'm coping, and pushing myself....(I know I >> shouldn't be doing that) but have to until hockey is over. When >> the fall >> coaching season is over, I plan on returning to the vitamin/mineral >> drips, >> I was getting over the summer......I had been in total >> remission..........I >> believe, I can get there again........I return to my LLMD November >> 12 for >> some more bloodwork, and to determine what steps to take >> next...........I'm >> sorry I haven't posted, I usually collapse when I get home, feed my >> two >> dogs, and go to bed...........looking forward to being able to talk >> to >> everyone again...........How are you Joan??? Thanks again for >> asking about >> us..........Connie nwnj >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 1999 Report Share Posted October 16, 1999 Hi, Connie, its Lovey in FL. I posted a response to on the LymeNet Flash board a few days ago re Flagyl http://www2.lymenet.org click on Flash and scroll to find it. We are also really serious about Marching On Washington and need someone in each state/area to help out with some responsibility. I guess I need to post this info to onelist announce. Anyway, if you know of any support groups/state associations, please send me their web addresses. Can any of you here tell me why the month of May sticks in my mind for this MOW. When does Congress or Senate/House reconvene? Connie, I cant see how you can hold you head up long enough to type anything. Your job is so psysical! I'll say a little prayer for you. Lovey On Fri, 15 Oct 1999 19:08:58 -0700 ConnieK <conniek@...> writes: > From: ConnieK <conniek@...> > > Hi Joan, > Thanks for asking about me........(Connie in NWNJ), I'm teaching and > coaching field hockey.......some days putting in 12-13 hour > days......this > stress has caused me to relapse.......so I am on Flagyl........after > about > two weeks, my teeth nerve pain has subsided, but the joint pain is > still > bothering me........but I'm coping, and pushing myself....(I know I > shouldn't be doing that) but have to until hockey is over. When > the fall > coaching season is over, I plan on returning to the vitamin/mineral > drips, > I was getting over the summer......I had been in total > remission..........I > believe, I can get there again........I return to my LLMD November > 12 for > some more bloodwork, and to determine what steps to take > next...........I'm > sorry I haven't posted, I usually collapse when I get home, feed my > two > dogs, and go to bed...........looking forward to being able to talk > to > everyone again...........How are you Joan??? Thanks again for > asking about > us..........Connie nwnj > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 1999 Report Share Posted October 16, 1999 Hi Joan, I am still here, (Connie, MI). I am lurking most of the time. Since going back to school in late august, didn't think I was going to make it. then both knees gave out. I could hardly make it home to ice them. Thennnnnn we had our conference, it is has been non stop. But I am getting the Hylagan (gel) shots in my right knee again. It really helps, but it takes 5 shots, one a week. I do read as much mail as I can, I put a pillow next to the computer when AOL is so bad and sort of wait as long as I can then give up and go lay down. I miss everyone and am trying to keep up. Know I have missed a lot. Love and hugs to all, Connie, MI Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 1999 Report Share Posted October 16, 1999 Connie, Glad to hear you are still around. Hang in there and hope you are feeling better. Vicki Re: [Lyme-aid] How are you? >From: Cslyme@... > >Hi Joan, > >I am still here, (Connie, MI). I am lurking most of the time. Since going >back to school in late august, didn't think I was going to make it. then >both knees gave out. I could hardly make it home to ice them. Thennnnnn we >had our conference, it is has been non stop. But I am getting the Hylagan >(gel) shots in my right knee again. It really helps, but it takes 5 shots, >one a week. > >I do read as much mail as I can, I put a pillow next to the computer when AOL >is so bad and sort of wait as long as I can then give up and go lay down. I >miss everyone and am trying to keep up. Know I have missed a lot. > >Love and hugs to all, >Connie, MI > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 1999 Report Share Posted October 17, 1999 Thanks, Vicki. Maybe we need to move up the MOW to April in order for these forums to debate the pro/cons of Lyme disease. Let me put out feelers for a positive date. Perhaps you would be willing to research how to obtain a permit in the meantime. The date we may set may coincide with another march. We want to be the Center of Attention when we go. If you would check this out I would deeply appreciate it. thanks, Lovey On Sat, 16 Oct 1999 00:41:30 -0400 " Vicki & Ferraro (home) " <ferraroa@...> writes: > From: " Vicki & Ferraro (home) " <ferraroa@...> > > Lovey, > > Maybe you are thinking about the house's summer vacation, I think > they > usually end on Memorial weekend through Sept or something like that. > what > ever I can do from land (45 minutes from D.C) , let me know and > I am > more than willing. If that means driving to D.C. to get the permit > to march, > or whatever, let me know. Thanks > Vicki > Re: [ ] How are you? > > > >From: lovey38@... > > > >Hi, Connie, its Lovey in FL. I posted a response to on the > >LymeNet Flash board a few days ago re Flagyl http://www2.lymenet.org > >click on Flash and scroll to find it. We are also really serious > about > >Marching On Washington and need someone in each state/area to help > out > >with some responsibility. I guess I need to post this info to > onelist > >announce. Anyway, if you know of any support groups/state > associations, > >please send me their web addresses. Can any of you here tell me > why > >the month of May sticks in my mind for this MOW. When does > Congress or > >Senate/House reconvene? Connie, I cant see how you can hold you > head up > >long enough to type anything. Your job is so psysical! I'll say a > >little prayer for you. Lovey > > > >On Fri, 15 Oct 1999 19:08:58 -0700 ConnieK <conniek@...> > writes: > >> From: ConnieK <conniek@...> > >> > >> Hi Joan, > >> Thanks for asking about me........(Connie in NWNJ), I'm teaching > and > >> coaching field hockey.......some days putting in 12-13 hour > >> days......this > >> stress has caused me to relapse.......so I am on > Flagyl........after > >> about > >> two weeks, my teeth nerve pain has subsided, but the joint pain is > >> still > >> bothering me........but I'm coping, and pushing myself....(I know > I > >> shouldn't be doing that) but have to until hockey is over. When > >> the fall > >> coaching season is over, I plan on returning to the > vitamin/mineral > >> drips, > >> I was getting over the summer......I had been in total > >> remission..........I > >> believe, I can get there again........I return to my LLMD November > >> 12 for > >> some more bloodwork, and to determine what steps to take > >> next...........I'm > >> sorry I haven't posted, I usually collapse when I get home, feed > my > >> two > >> dogs, and go to bed...........looking forward to being able to > talk > >> to > >> everyone again...........How are you Joan??? Thanks again for > >> asking about > >> us..........Connie nwnj > >> > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 1999 Report Share Posted October 17, 1999 In a message dated 10/18/99 1:57:00 AM, jscully@... writes: <<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. >> @----------->------------------- Hi Jean I am sorry to hear of your relapse, but I am so happy to hear of your upcoming wedding and progress in your career!! Keep good thoughts close to your heart! I wish you the best! {hug} Jane (CT) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 1999 Report Share Posted October 17, 1999 Lovey, I have know idea how to start. But I'll pick up the phone tomorrow and start probing. I agree, we need to do it, and be the center of attention. Vicki Re: [ ] How are you? >> >> >> >From: lovey38@... >> > >> >Hi, Connie, its Lovey in FL. I posted a response to on the >> >LymeNet Flash board a few days ago re Flagyl http://www2.lymenet.org >> >click on Flash and scroll to find it. We are also really serious >> about >> >Marching On Washington and need someone in each state/area to help >> out >> >with some responsibility. I guess I need to post this info to >> onelist >> >announce. Anyway, if you know of any support groups/state >> associations, >> >please send me their web addresses. Can any of you here tell me >> why >> >the month of May sticks in my mind for this MOW. When does >> Congress or >> >Senate/House reconvene? Connie, I cant see how you can hold you >> head up >> >long enough to type anything. Your job is so psysical! I'll say a >> >little prayer for you. Lovey >> > >> >On Fri, 15 Oct 1999 19:08:58 -0700 ConnieK <conniek@...> >> writes: >> >> From: ConnieK <conniek@...> >> >> >> >> Hi Joan, >> >> Thanks for asking about me........(Connie in NWNJ), I'm teaching >> and >> >> coaching field hockey.......some days putting in 12-13 hour >> >> days......this >> >> stress has caused me to relapse.......so I am on >> Flagyl........after >> >> about >> >> two weeks, my teeth nerve pain has subsided, but the joint pain is >> >> still >> >> bothering me........but I'm coping, and pushing myself....(I know >> I >> >> shouldn't be doing that) but have to until hockey is over. When >> >> the fall >> >> coaching season is over, I plan on returning to the >> vitamin/mineral >> >> drips, >> >> I was getting over the summer......I had been in total >> >> remission..........I >> >> believe, I can get there again........I return to my LLMD November >> >> 12 for >> >> some more bloodwork, and to determine what steps to take >> >> next...........I'm >> >> sorry I haven't posted, I usually collapse when I get home, feed >> my >> >> two >> >> dogs, and go to bed...........looking forward to being able to >> talk >> >> to >> >> everyone again...........How are you Joan??? Thanks again for >> >> asking about >> >> us..........Connie nwnj >> >> >> >> --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 1999 Report Share Posted October 17, 1999 Its good to hear you are doing better. What supplements were you on that you now quit? Vicki Re: [ ] How are you? >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 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 1999 Report Share Posted October 18, 1999 Thanks, Vicki. Also how would I get a tape that Reid was talking about? Lovey On Sun, 17 Oct 1999 20:51:47 -0400 " Vicki & Ferraro (home) " <ferraroa@...> writes: > From: " Vicki & Ferraro (home) " <ferraroa@...> > > Lovey, > > I have know idea how to start. But I'll pick up the phone tomorrow > and start > probing. I agree, we need to do it, and be the center of attention. > > Vicki > Re: [Lyme-aid] How are you? > >> > >> > >> >From: lovey38@... > >> > > >> >Hi, Connie, its Lovey in FL. I posted a response to on > the > >> >LymeNet Flash board a few days ago re Flagyl > http://www2.lymenet.org > >> >click on Flash and scroll to find it. We are also really > serious > >> about > >> >Marching On Washington and need someone in each state/area to > help > >> out > >> >with some responsibility. I guess I need to post this info to > >> onelist > >> >announce. Anyway, if you know of any support groups/state > >> associations, > >> >please send me their web addresses. Can any of you here tell > me > >> why > >> >the month of May sticks in my mind for this MOW. When does > >> Congress or > >> >Senate/House reconvene? Connie, I cant see how you can hold you > >> head up > >> >long enough to type anything. Your job is so psysical! I'll > say a > >> >little prayer for you. Lovey > >> > > >> >On Fri, 15 Oct 1999 19:08:58 -0700 ConnieK <conniek@...> > >> writes: > >> >> From: ConnieK <conniek@...> > >> >> > >> >> Hi Joan, > >> >> Thanks for asking about me........(Connie in NWNJ), I'm > teaching > >> and > >> >> coaching field hockey.......some days putting in 12-13 hour > >> >> days......this > >> >> stress has caused me to relapse.......so I am on > >> Flagyl........after > >> >> about > >> >> two weeks, my teeth nerve pain has subsided, but the joint > pain is > >> >> still > >> >> bothering me........but I'm coping, and pushing myself....(I > know > >> I > >> >> shouldn't be doing that) but have to until hockey is over. > When > >> >> the fall > >> >> coaching season is over, I plan on returning to the > >> vitamin/mineral > >> >> drips, > >> >> I was getting over the summer......I had been in total > >> >> remission..........I > >> >> believe, I can get there again........I return to my LLMD > November > >> >> 12 for > >> >> some more bloodwork, and to determine what steps to take > >> >> next...........I'm > >> >> sorry I haven't posted, I usually collapse when I get home, > feed > >> my > >> >> two > >> >> dogs, and go to bed...........looking forward to being able to > >> talk > >> >> to > >> >> everyone again...........How are you Joan??? Thanks again for > >> >> asking about > >> >> us..........Connie nwnj > >> >> > >> > >> --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 1999 Report Share Posted October 19, 1999 In a message dated 10/19/99 7:56:37 PM, Namkrats3@... writes: <<'m so glad that you are having positive results with PT & acupuncture. Is your massage part of your PT? Is it covered by ins.? I'd love to have my aching back massaged! @-->----------- Hi Joan My acupuncture and massage are separate from PT. In fact at PT I don't get any of the nice stuff... only work outs for me! )<: It is because I am not in pain, I have muscle weakness and reduced sensation... MY PT is fully covered by insurance (I hit my out of pocket for the first time ever). My LLMD wrote a script for the acupuncture and massage, so we'll see if they cover it! Hey, the guy has a licensee from the state of CT's health department, so it should be covered! You should ask your doctor to prescribe " therapeutic massage " . Can't hurt to try! ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ I'm also on Biaxin and Plaquinil, but couldn't tolerate taking the Doxy at the same time as the Biaxin...it made me extremely weak. I've found that since my LLMD added the Plaquinil, that my horrendous fatigue has improved for the first time! My other sx have remained the same, but the vertigo has worsened. @------->---------- I think I am iron stomach!! Either that or I haven't been on abx long enough for them to upset my system. This is the most aggressive we have been. My strength, balance, and stamina have all improved with this combo. I am very hopeful! I am on 1,000 mg. Biaxin, 300 mg. Dxy., and 400 mg. Plaquinil. Don't forget to have your eyes tested with the Plaquinil!! I also am set to have a blood test every 2 weeks to test for toxicity... ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Your cervical MRI results are perplexing, but, hey, if you feel good... Are you on any anti-inflammatories that might be helping your cervical condition? I'm going for a cervical and lumbar MRI this Fri. I'm afraid of what it will show because I have terrible neck and back problems, and went undiagnosed for LD for over 10 yrs... @--------->----------- I am a walking medical puzzle! Can't tell you how many doctors have looked at those MRI films and shake their heads in astonishment. I saw the disc and it is SIGNIFICANTLY herniated. I will count my blessings that I am asymptotic!! No, I am not on any medications, except for a tylenol PM each night before bed. Tomorrow morning I am seeing a neurosurgeon, just for input. No way am I going to have surgery with spirochetes running rampant thru my body! Good luck with your MRIs! I didn't find it too bad. I had the open kind with lots of music playing. It just sounded like knocking and a mini jack hammer.... ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Your story is uplifting, and I wish you continued improvement! @----->---------- Thanks Joan! I am still a long way from " healthy " , but I am positive! I think that mind set is very important to the healing process! {{hugs}} Jane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 1999 Report Share Posted October 19, 1999 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 October 19, 1999 Report Share Posted October 19, 1999 Jane, I'm so glad that you are having positive results with PT & acupuncture. Is your massage part of your PT? Is it covered by ins.? I'd love to have my aching back massaged! I'm also on Biaxin and Plaquinil, but couldn't tolerate taking the Doxy at the same time as the Biaxin...it made me extremely weak. I've found that since my LLMD added the Plaquinil, that my horrendous fatigue has improved for the first time! My other sx have remained the same, but the vertigo has worsened. Your cervical MRI results are perplexing, but, hey, if you feel good... Are you on any anti-inflammatories that might be helping your cervical condition? I'm going for a cervical and lumbar MRI this Fri. I'm afraid of what it will show because I have terrible neck and back problems, and went undiagnosed for LD for over 10 yrs... Your story is uplifting, and I wish you continued improvement! Hugs back at ya, 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: JVSPL@... In a message dated 10/15/99 9:16:18 PM, Namkrats3@... writes: <<I haven't seen (or I may have missed) any recent postiings from: Dabs, , Fransea, , Jane, both Jeans, Patty, , both Connies & Val. How are you guys doing???>> Hi Joan I have been so busy with PT, acupuncture/massage, and doctors appointments that I haven't written to anyone! I am gaining muscle strength and improving my balance with PT! I have had two sessions of acupuncture and massage. The acupuncture is weird, but not all that uncomfortable. The massage is heavenly! I have noticed that I can move my legs better, the muscle releases and reflexology appears to be helping. Saw my Lyme Doc. and now I am on Biaxin (1,000 mg.), Plaquinil (400mg.), and Doxycycline (300 mg.). I don't want to jinx myself, but I am beginning to " feel " more! In fact I got used to walking with reduced sensation, and now I have to learn to walk with increased sensation! GO figure! My Lyme doctor looked at me and said... Lyme is a horrible disease... Yes he is one of the " biggies " in the field! Today I met with my neurologist. We reviewed my cervical MRI and EMG... Well, according to the MRI I should be in severe pain, with little to no range of motion... NOT! I have no doubt that there is neck involvement, but it can't be that serious! Even the results of the EMG showed mostly normal nerve responses, and those that weren't were mildly effected... If my spinal cord is being flattened... how could the EMG be basically normal? I don't understand. Either does my neurologist... she just kept shaking her head! LOL On top of that she sees that physically I have improved since I saw her on 9/17! My case is really a puzzle... Personally I don't care so long as the pieces come together! (<: I feel as though I am finally on the road to recovery... It is a long road indeed! I will try to keep you posted... I am far from well, but I have renewed hope! Take Care! {{hugs}} Jane CT Don't remember a tick bite! Live in endemic area. Flu Like Symptoms March 23, 1999 7 days of Amoxy beginning of April. for sinus infection 10 days Amoxy for Strep A April 30-May 10. May 14 Severe Fatigue set in with Fevers and Aches. Doctor suspected Lyme and prescribed 30 Days Doxy. ELISA: Negative Saw LLMD June 24... 30 days Tetracycline Western Blot: Equivocal (4 out of 5 bands for Lyme +) Babesia Test: Negative August Ceftin (caused Lyme bacteria to bleb) Full Blown Neuro-Lyme September Amoxycillin and Doxycycline October Biaxin, Doxycycline, and Plaquinil 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 Hi Connie nwnj, I'm really impressed that you were able to go back to teaching and coaching. I guess it was a little too much, though. I hope that the Flagyl continues to help you, and you're right...you will go into remission again. Just don't push yourself so hard! My unbearable fatigue has improved on the Biaxin/Plaquinil combo. I hope it does something for my neuro and arthritic problems, too! I'll see my LLMD on the 25th and see what he says. Let us know how you are doing once in a while! 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: ConnieK <conniek@...> Hi Joan, Thanks for asking about me........(Connie in NWNJ), I'm teaching and coaching field hockey.......some days putting in 12-13 hour days......this stress has caused me to relapse.......so I am on Flagyl........after about two weeks, my teeth nerve pain has subsided, but the joint pain is still bothering me........but I'm coping, and pushing myself....(I know I shouldn't be doing that) but have to until hockey is over. When the fall coaching season is over, I plan on returning to the vitamin/mineral drips, I was getting over the summer......I had been in total remission..........I believe, I can get there again........I return to my LLMD November 12 for some more bloodwork, and to determine what steps to take next...........I'm sorry I haven't posted, I usually collapse when I get home, feed my two dogs, and go to bed...........looking forward to being able to talk to everyone again...........How are you Joan??? Thanks again for asking about us..........Connie nwnj 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 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: " " <jeand@...> Hi Joan ... this is doing okay!! Went to the Texas/OU game in Dallas last weekend and had to take a Xanax ... WAY too many people and I had a dandy panic attack. But the meds. worked and all was well. Thanks so much for asking ... you're sweet to think of us!! :-) Ann (TX) Infected in MI in 1990. Am off all meds and still have flares every 3 - 6 months. (But hanging in there.) 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 Hi , Boy, alot of us seem to be feeling bad at the same time! How long will you be on the IV Doxy? What made your LLMD decide to put you on it? I guess your dizziness and headaches are a " good " thing...a necessary evil... I've found that since I started taking Plaquinil, my headaches have returned, as did my vertigo, so it must be doing something... The support group that I go to is in Port Jefferson (Western Suffolk County)...we'd LOVE to have you when you're well enough to make it! Love to meet you in person! I don't know of any groups closer to you...you might want to ask Val... Feel Better! Hugs :-) 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: BearyPrety@... In a message dated 10/15/99 4:16:05 PM EDT, Namkrats3@... writes: << I haven't seen (or I may have missed) any recent postiings from: Dabs, , Fransea, , Jane, both Jeans, Patty, , both Connies & Val. How are you guys doing??? >> Hi {{{ JOAN }}} So funny that you sent this email today. I have been thinking about you all day . Wondering how your doing and thinking about the same thing you were,about where a few of us " oldtimers " have been . I guess we're all feeling pretty lousy at the same time. Its my 6th week on IV doxy and I think this week has been the worse. Been having alot of neuro herxes. Bad headaches and dizziness and just Yukky feeling. I have been skimming through mail here once ina while, but to tell you the truth, I just can't spend too much time here or write any posts b'cuz looking at the screen makes me crosseyed. Theres nothing worse than a dizzy crosseyed woman with a headache !!! LOL ... Hey , Lets look at it this way.. we'll probably all get better at the same time and be up reading mail till midnight everynight when we all come back with a bunch of stuff to catch up on ! : ) I hope your feeling better. Anything new going on? You know, I read one of your posts that mentioned a support group on the island. Is it near Great Neck? Maybe I'll join you one night, If newcomers are welcomed.I'm in Queens and travel to the island all the time. All of my docs are there. Let me know when you have time okay . I know that Val has a support group started in Manhattan, I'd like to pop up there too. Hey maybe we'll even get to meet in person : ) Who knows ! Keep in touch , hugs 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 Hi Connie, We've missed you too...glad you made it back to school! What is Hylagan? I, too have knee problems and was wondering what it does. Try not to push yourself too hard! Take care, 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: Cslyme@... Hi Joan, I am still here, (Connie, MI). I am lurking most of the time. Since going back to school in late august, didn't think I was going to make it. then both knees gave out. I could hardly make it home to ice them. Thennnnnn we had our conference, it is has been non stop. But I am getting the Hylagan (gel) shots in my right knee again. It really helps, but it takes 5 shots, one a week. I do read as much mail as I can, I put a pillow next to the computer when AOL is so bad and sort of wait as long as I can then give up and go lay down. I miss everyone and am trying to keep up. Know I have missed a lot. Love and hugs to all, Connie, MI 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...
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