Guest guest Posted June 12, 2000 Report Share Posted June 12, 2000 Hi Lovette, I don't think you read my post wrong. The brain fog and other neuro problems are just there. They have been for 10 yrs. and probably always will be. I have become accustomed to them and you're right ... this is exactly what my life is going to be like. Don't much care for the neuro stuff, but hey ... it's better than the alternative. I consider myself in remission because for the past several years I haven't been sleeping 15 - 18 hours a day. I don't have the daily, horrendous headaches. Haven't had meningitis in a long time!!! The arthritis is under control. I am back to walking an hour a day on the treadmill at 3.6 mph. I can play 18 holes of golf w/o getting tired. I work part-time, 8:00 - 12:00 Mon. - Fri., I have three web sites that I play with, and a grandson who takes a LOT of energy. LOL! So for me, it's great!! That's why I consider myself to be in remission. And I'm just stubborn enough to NOT let Lyme get me. That's one reason why I chose to go off meds ... I knew I could beat it. I have a very positive attitude and I just refused to give in to it. But for the first three yrs. I did nothing ... couldn't do anything. Was VERY sick even with all the abx. But then I decided I WOULD get well. :-) Yes, I still get words all tangled up and sometimes I have to describe everything by using other words ... much like playing charades. And I have a tendency to totally lose my train of thought mid-sentence. But like I said, it's been like that for 10 yrs. and I'm not holding out much hope for any improvement in that area. The damage has been done and I don't know that it can be undone. I REALLY hope you can get to the point where I am ... as well as everyone else struggling daily with this rotten disease. I was VERY lucky in that when I went off all meds. it wasn't that bad. I managed to get thru it and come out the other side in pretty good shape ... considering. Many (if not most) Lyme patients can't do that. And even tho' I consider myself to be in remission, and I do have a pretty active life, I always read everything I can get my hands on about Lyme, I write letters, I make phone calls, even had two articles on Lyme published in local newspapers. But I don't post a whole lot and don't get too vocal about things. But I'm here ... working for the cause!! :-) Many people who go into remission leave the list and go out and enjoy their lives. Well, I do too. But I won't leave the list. I'd be lost without it!! *Grin* Be well!!! :-) Jean > - how in the world can you call yourself in remission with > brain-fogging and neuro symptoms? That's lyme - that's why I can't read > for long, that's why I get my words mixed up, or just halt when I speak > - I'm not in remission! I haven't even begun to figure out what > remission is! Perhaps you've come to an understanding that I have not - > that this is what like is like and what it will be like. I'm coming up > on my 2 year anniversary of this disease, was treated promptly, and I'm > not getting better. Maybe you can shed light on your situation for me > if I've misread what you said. > > Lovette Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2000 Report Share Posted June 12, 2000 Lovette-- I'm with you....if you are still brain fogging and neuro symptoms....you still have LYME...you are not in remission....I have been on IV's for 2 years and it has taken that long to help clear my thinking, not back to normal yet...but much better than before...can accomplish more...maybe that is what was trying to say---she is accomplishing more and feels it is the best it is going to get... don't know...but I would not use the word remission unless I had ALL my faculties back... Rhonna Arconic wrote: > Dear Connie and Jean: Connie - don't wait around worrying about > whether you'll relapse. Enjoy your health when you have it, and live > life to the fullest for all of us! > > - how in the world can you call yourself in remission with > brain-fogging and neuro symptoms? That's lyme - that's why I can't read > for long, that's why I get my words mixed up, or just halt when I speak > - I'm not in remission! I haven't even begun to figure out what > remission is! Perhaps you've come to an understanding that I have not - > that this is what like is like and what it will be like. I'm coming up > on my 2 year anniversary of this disease, was treated promptly, and I'm > not getting better. Maybe you can shed light on your situation for me > if I've misread what you said. > > Lovette > > Many thanks to our founder and friend, Marta McCoy, for making what it is today. > > Easy Reference: > Send a blank email message to: > > -Subscribeegroups - Subscribe to the list through email > -Unsubscribeegroups - Unsubscribe from the list > -Digestegroups - Switch your subscription to a digest format > -Normalegroups - Switch your subscription to normal > > Please send messages not related to Lyme disease to -Offtopicegroups > > Archives can be accessed at lyme-aid > > Please visit the chat room at chat/lyme-aid Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2000 Report Share Posted October 1, 2000 It's encouraging to hear of someone who feels well....Thanks for sending the hope OR The human spirit is stronger than anything that can happen to it. C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2000 Report Share Posted October 1, 2000 Dear Connie, YIPPEE! Congrats!!! Have you asked doc or looked into supplements, etc. which can help to boost your immune system naturally? Blessings, Chris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2000 Report Share Posted October 1, 2000 Connie, your good news gives us all hope! Fingers crossed and prayers on the way. Good luck. --charlotte Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2000 Report Share Posted October 6, 2000 rheumatic remission > > > > Doris, > > I am not in remission yet, but I do think I am very close. For me " close > > to " remission is.... > > > > ***not being afraid of going to bed due to not turning into a block of > > cement at night > > anymore. I used to be terrified to go to sleep as I would literally have > to > > scream out when I tried to bend my frozen joints as it was so painful. > > > > ***Sleeping SOUNDLY! > > > > ***Not being afraid to get out of bed in the morning as my feet no longer > > feel as if they have stones sewed into them and all of my joints move with > > ease except a few triggering finger joints. > > > > ***Having the trigger fingers back to normal within an hour of getting up > > > > ***Not spending time thinking about the disease as now I rarely even think > > of having it > > unless the seven hours of standing on cement floors at work gets the best > > of me > > > > ***No longer being obsessed and spending hours on the internet looking for > > " cures " as I am at a very even state with the disease > > > > ***I am getting sore muscles and not joints from working out with weights > > > > ***My temperment is much better! > > > > *** I think clearly and positively > > > > *** getting out of a car using one leg and then the other and not swinging > > to the side to get out > > > > *** Grabbing, twisting, pulling, pushing objects without pain and without > > thinking about it > > > > *** No more aching! > > > > ***Not fearing the " low " comodes! > > > > ***Just overall...feeling good! > > > > Plus, I have completely been of prednisone for six months and have cut my > > plaquenil in half. I will be having blood tests in Novemember that will > > better tell the story ( I hope!) > > > > Doris, hang in there. I was in terrible shape for almost two years on the > > antibioitics. > > then things starting getting better, and better , and better! > > > > I have been to several doctors lately and they could not believe that I > had > > RA. They were floored and told me that they would have never imagined it. > I > > have had three doctors take down Dr. Franco's name as they were so > > impressed with how well I am doing. I went to look at a house the other > > day, and the realator was so impressed at the ease I could get up and down > > the steps that she gave my name to a friend of hers to call me about the > AP > > treatment. Just 8 months ago, I had to use a ramp to get in and out of my > > house as I couldn't use steps. > > > > > > > > > > > > To unsubscribe, email: rheumatic-unsubscribeegroups > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2000 Report Share Posted October 6, 2000 Sonny, You do realize you're just what we've been waiting for -- a doctor on the AP! Just remember, when you start feeling better, we'll all be expecting you to go to lots of medical conventions and spread the word. :} Hugs, a Peden tneoh wrote: > > Re: rheumatic remission > > > Dear , I am so impressed. I have just started AP for my sero > negative > > arthritis and I am a doctor. Your post gives me so much hope > > > > Sonny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2000 Report Share Posted October 9, 2000 Welcome Dr Sonny! I was also treated with high dose IV antibiotics (more on the Lyme profile) and got tremendous recovery. Until my emotionally stressful divorce. There are lots of good news stories here.Can I ask where are you from? Feel free to email privately. in MI << > > Dear , I am so impressed. I have just started AP for my sero > negative > > arthritis and I am a doctor. Your post gives me so much hope > > > > Sonny >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2000 Report Share Posted October 9, 2000 Dear , I am practising in Malaysia.I was trained and practised for a while in Australia.While it is good that as a doctor you have access to more resources and can continue working while having this problem, it is possibly more stressful bec you know more about the potential harmful effects of the disease and medications. But I am not complaining it could be a lot worse.I am confident it is not in God's plan for me to be limping around for the rest of my days. regards, sonny --- Original Message ----- From: <Sjlane99@...> <paula.peden@...>; <tneoh@...> Cc: <rheumaticegroups>; <LCarroll@...> Sent: Tuesday, October 10, 2000 11:21 AM Subject: Re: Fw: rheumatic remission > Welcome Dr Sonny! I was also treated with high dose IV antibiotics (more on > the Lyme profile) and got tremendous recovery. Until my emotionally stressful > divorce. There are lots of good news stories here.Can I ask where are you > from? Feel free to email privately. > in MI > > << > > Dear , I am so impressed. I have just started AP for my sero > > negative > > > arthritis and I am a doctor. Your post gives me so much hope > > > > > > Sonny >> > > > To unsubscribe, email: rheumatic-unsubscribeegroups > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2000 Report Share Posted October 9, 2000 on 10/9/00 11:18 PM, tneoh at tneoh@... wrote: > Dear , > I am practising in Malaysia.I was trained and practised for a while in > Australia.While it is good that as a doctor you have access to more > resources and can continue working while having this problem, it is > possibly more stressful bec you know more about the potential harmful > effects of the disease and medications. > > But I am not complaining it could be a lot worse.I am confident it is not > in God's plan for me to be limping around for the rest of my days. > regards, > sonny Sonny, We are really happy to have you on the list. The AP seems to be particularly helpful for sero-negative arthritis. We hope it helps you! Jean Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2000 Report Share Posted October 10, 2000 Hi , I also stay in Michigan (Southfield) .Can you tell me the doctor you went and who prescribed you the antibiotics . My doctor (rheumy) has given me antibiotics for only 30 days and that too after making a lot of noises , Thanks, Suranjan Re: Fw: rheumatic remission Welcome Dr Sonny! I was also treated with high dose IV antibiotics (more on the Lyme profile) and got tremendous recovery. Until my emotionally stressful divorce. There are lots of good news stories here.Can I ask where are you from? Feel free to email privately. in MI << > > Dear , I am so impressed. I have just started AP for my sero > negative > > arthritis and I am a doctor. Your post gives me so much hope > > > > Sonny >> To unsubscribe, email: rheumatic-unsubscribeegroups Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2000 Report Share Posted October 25, 2000 > Jude > > Do you have any clue as to how your disease went into remission. Did > you > change your diet or exactly how did it go into remission? Thanks so > much > and sorry to hear about your dad.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 25, 2000 Report Share Posted November 25, 2000 snipped fr. message: > glad you have been in remission for almost three years. Hi, I am confused by the term remission. Do Lymies not get better? Do the bacteria stay in us? Sorry if this is " old hat " to people - my LLMD has never specifically said anything about this, except that I would feel better and better (which is true). There are many symptoms which I have never had, such as tingling, numbness, arthritis. (By the way, I got off the 2nd abx, the doxy, and I feel better now. I will try to go on it again after I get my thesis proposal in. Thank you to everyone who wrote me). Healing, and best wishes, to all, Marie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 25, 2000 Report Share Posted November 25, 2000 Hi Marie, I say remission, because I have heard of so many that felt they were cured for years only to have the bacteria break out of hiding, two, three, five, and even 10 years later...........unfortunately, I think we have to say remission............there are too many lyme " cured " patients out there that have become reactivated years later............is it from a hiding critter? or a new undetected tick bite........I don't think we know enough....to say cured.............Connie in Remission nwnj. Leave no stone unturned....... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 26, 2000 Report Share Posted November 26, 2000 marie...while the point is contested by the academics...most of us here feel that we are never cured....personally in 11 years i have had periods of remission for up to 18 months at a time...but never longer......and my own experiance is each time i come out of remissionn that my symptoms are stronger....i had a 3 week remission in 96 and when it hit again i became tottaly disabled....it may not be the same for all but that is what has happened to me.... Reid Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2000 Report Share Posted November 27, 2000 Reid and Marie I felt impelled to write, because " knock on (my head) wood, it has been 12 months for me that I have been in remission. I am keeping my fingers crossed and hope it stays away. (From the physical aspect caused by Lyme disease) I am on Aricept (prescription) for my short term memory loss which has improved dramaticly where I am now attending a 16 wk / one day per week Supervisory class that my job has made available to me to attend, hopefully for future promotional opportunities. I cannot fathom getting all the physical symtoms all over again. I hope after another 12 months on November, 2001, I can send another email to everyone that I am working on my 2 yr remission from Lyme disease.......... Alan NJ Farmhaven2@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2000 Report Share Posted November 27, 2000 Congratulations on your one year Remission.......I pray it stretches into many years. I also hope my few months of remission also extend into years...........and let there be a cure soon for everyone!!!!.............Glad to hear the good news................Connie in remission, nwnj Leave no stone unturned....... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2000 Report Share Posted December 1, 2000 alan...i also hope in a year that u can send that email......someday maybe we all will enjoy ong remissions or even a cure....my llmd wife hasa lyme....and she is going thru a bad period now.....i was just in to see him....he feels at the current point we must all cope day to day ...enjoy the good ones and battle thru the bad.......hell of a way to live but these our are choices......i wish i could give people more hope but i tell it as i have lived it for over a decade......i pray for a cure ...for all of us.... Reid Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2001 Report Share Posted March 1, 2001 --- minina62@... wrote: > I have read some people's stories here that mention > " remission. " My > fiance, who is the one who suffers PA, does not know > what that is, > since he never experienced it. He has had PA for > almost 23 years. > He developed it when he turned 13, right at the > onset of puberty. > Has any of you lived through the same experience, no > having had any > episode of remission ever? If so, would you mind > sharing your > experience and how you have coped along the years? > > > Hello: I have had PA for about 5 years and am 45 years old. I went from a very healthy tomboy to a person just nearly unable to walk and function on a job in a matter of weeks. since that time i have had a couple of times of near pair free periods. at this time i can say that every movement hurts but I keep going. Sorry that your friend is also suffering. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2001 Report Share Posted March 1, 2001 i am going on ten years i am now 28 years old and have never had a remission. it just keeps getting worse the drugs seem to do little but i haven't experienced any of the side effects people complain about. i just started sulfasalazine i will keep you posted. mornings are definitely the worst which sucks because i used to love to sleep in. now my back wakes me up and i rarely get back to sleep. i find hot baths and heat pads helpful. kevin >From: minina62@... >Reply- > >Subject: [ ] Remission >Date: Thu, 01 Mar 2001 12:45:26 -0000 > >I have read some people's stories here that mention " remission. " My >fiance, who is the one who suffers PA, does not know what that is, >since he never experienced it. He has had PA for almost 23 years. >He developed it when he turned 13, right at the onset of puberty. >Has any of you lived through the same experience, no having had any >episode of remission ever? If so, would you mind sharing your >experience and how you have coped along the years? > > _________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2001 Report Share Posted March 2, 2001 Our doc claims that my hubby can go into remission if properly treated...he hasn't as of yet (that i know of) he is nowhere as bad as he was a year ago, tho, and since mtx is used to treat forms of cancer, i think the word remission is generalized - we were told that it is possible to go into remission and not have to take any more meds....(i thought i was the only one who had heard of the remission thing since so many here seem so have been suffering for so long) minina62@... wrote: I have read some people's stories here that mention "remission." My fiance, who is the one who suffers PA, does not know what that is, since he never experienced it. He has had PA for almost 23 years. He developed it when he turned 13, right at the onset of puberty. Has any of you lived through the same experience, no having had any episode of remission ever? If so, would you mind sharing your experience and how you have coped along the years? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2001 Report Share Posted March 3, 2001 Carol, I went into remission on MTX--was actually walking like normal and had no problems at all. I gradually tapered off and was on nothing at all. That worked really well for me for about 6 months and by then I was in the midst of planning a wedding. Welcome back aches and pains (although not remotely as bad as they were before). The crux is...it can happen. IF it does happen, try to be REALLY careful to avoid extra stresses, etc. and be really thankful and enjoy life! Sinead > > >Our doc claims that my hubby can go into remission if properly >treated...he hasn't as of yet (that i know of) he is nowhere as bad as he >was a year ago, tho, and since mtx is used to treat forms of cancer, i >think the word remission is generalized - we were told that it is possible >to go into remission and not have to take any more meds....(i thought i was >the only one who had heard of the remission thing since so many here seem >so have been suffering for so long) _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2001 Report Share Posted April 20, 2001 > , I have been prednisone-free for over a year, with normal labs at each testing. I do take 50mg of Imuran, as well as 750mg of Urso 250 for my AIC. I consider that I am in medically-induced remission from AIH, because my hepatitis is chronic, with second biopsy showing that inflammation continues. However, I feel pretty good and haven't had a noticable " relapse " in terms of abnormal labs or symptoms other than continual fatigue, joint pain and pruritis; those remain, no matter what, but are mild and not debilitating. Because my response to the meds has been so good, I do not expect to need a transplant. So no matter whether I call it remission or not, I consider myself blessed. > > Sorry to blather on so! > Kay in Austin Hi Kay To begin with, my major affliction is computer illiteracy, not AIH so I hope this gets through to you. I am interested in your case because it is very similar to the treatment my doctor has in store for me. She is recommending that I go off prednisone(currently 5mg) and imuran(currently 50mg) and just stay on urso deoxy(currently 1000mg but up to 2000 mg when I go off the other medications). You say that your labs are good but that your biopsy shows you still have hepatitis. This is not the first time I have heard this on this web site. I always thought if your labs were okay, your liver was okay. Do you know the reason for this? in Toronto Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2001 Report Share Posted June 27, 2001 In a message dated 6/19/01 5:32:11 PM Central Daylight Time, mhorten@... writes: Subj: remission Date: 6/19/01 5:32:11 PM Central Daylight Time From: mhorten@... (Horten, Mona) Reply-to: hyperthyroidism hyperthyroidism ('hyperthyroidism ') Retta, I kept myself on meds even though prior doctors wanted to take me off. Changed docs, this one believes in very slow reduction of meds so as not to shock the system. He and I both made the decision to reduce slowly and finally stop meds in January. Levels have pretty much stayed the same since last Fall (with and without meds). I think several factors are involved but reducing dosage slowly was a big factor. I was taking 1/4 pill/once day for several months before stopping completely. Wish I had more to offer, guess my body decided it was time to recover. I'm praying for continued remission!! BUT NEVER, EVER RAI!!!! Take care, Mona Mona, are you on Tapazole or PTU? thanks Kim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2001 Report Share Posted June 27, 2001 Hi Kim, I was on PTU. Five years ago I was placed on TAP but had a nasty allergic reaction. No problems with PTU. I've been off meds since January. Mona Re: remission In a message dated 6/19/01 5:32:11 PM Central Daylight Time, mhorten@... writes: Subj: remission Date: 6/19/01 5:32:11 PM Central Daylight Time From: mhorten@... (Horten, Mona) Reply-to: hyperthyroidism hyperthyroidism ('hyperthyroidism ') Retta, I kept myself on meds even though prior doctors wanted to take me off. Changed docs, this one believes in very slow reduction of meds so as not to shock the system. He and I both made the decision to reduce slowly and finally stop meds in January. Levels have pretty much stayed the same since last Fall (with and without meds). I think several factors are involved but reducing dosage slowly was a big factor. I was taking 1/4 pill/once day for several months before stopping completely. Wish I had more to offer, guess my body decided it was time to recover. I'm praying for continued remission!! BUT NEVER, EVER RAI!!!! Take care, Mona Mona, are you on Tapazole or PTU? thanks Kim Quote Link to comment Share on other sites More sharing options...
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