Guest guest Posted April 6, 2005 Report Share Posted April 6, 2005 Hi Ewa, Yes when I was first diagnosed in 2002 my titer count was very high, I only took oral antibiotics for a few months...but they tested me last month and found no trace of lyme, but I am still having the same pain the as well as all the other symptoms. Today I crashed and had to spend in bed. It can lay dormant then become active again. Don't give up, hang in there. Carolyn > > > I am looking for some information. Several years ago I was diagnosed > and treated for lyme. However, despite the treatment I continue to > suffer from chronic pain, fatigue, arthritis, episcleritis and so on. > Recently I asked my physician to refer me to a specialist to explore > the idea of maybe lyme continuing to fester in my system. However, > when I went for a blood test, the test was negative and the specialist > refused to see me. " He only sees patients with positive results. " I > wanted to know, if anyone out there has tested negative, yet continued > to suffer from lyme or the effects of it and what he/she might have > done about it. Any input would be greatly appreciated. > Ewa Roy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2005 Report Share Posted April 7, 2005 My very first lyme test way back in 1990 was positive.. Since then and i've been on years of treatment continuously my tests all bounce back and forth now. One time I may be negative and 2 mos later I'll be positive again.. The same thing seems to happen with my coinfections as well... Robyn In a message dated 4/6/2005 10:40:23 PM Central Standard Time, ewaroy@... writes: I am looking for some information. Several years ago I was diagnosed and treated for lyme. However, despite the treatment I continue to suffer from chronic pain, fatigue, arthritis, episcleritis and so on. Recently I asked my physician to refer me to a specialist to explore the idea of maybe lyme continuing to fester in my system. However, when I went for a blood test, the test was negative and the specialist refused to see me. " He only sees patients with positive results. " I wanted to know, if anyone out there has tested negative, yet continued to suffer from lyme or the effects of it and what he/she might have done about it. Any input would be greatly appreciated. Ewa Roy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2005 Report Share Posted April 7, 2005 Lyme disease is a clinical diagosis per the CDC/ Your doctor should not refuse to treat you on a negative test. connie, mi [ ] Lyme Test negative > > > > I am looking for some information. Several years ago I was diagnosed > and treated for lyme. However, despite the treatment I continue to > suffer from chronic pain, fatigue, arthritis, episcleritis and so on. > Recently I asked my physician to refer me to a specialist to explore > the idea of maybe lyme continuing to fester in my system. However, > when I went for a blood test, the test was negative and the specialist > refused to see me. " He only sees patients with positive results. " I > wanted to know, if anyone out there has tested negative, yet continued > to suffer from lyme or the effects of it and what he/she might have > done about it. Any input would be greatly appreciated. > Ewa Roy > > > > > > > > > > Questions and/or comments can be directed to the list owner at > -Owner > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2005 Report Share Posted April 7, 2005 > Lyme disease is a clinical diagosis per the CDC/ Your doctor should not > refuse to treat you on a negative test. I agree, but if the Dr is that ignorant, dont know that I would want them to treat me to being with. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2005 Report Share Posted April 7, 2005 Robyn With your yrs of treatment, testing neg/positive on test. How did/do you feel? Could you feel the positive/neg times or did you feel the same the whole time while on treatment? PrincessRobyn70@... wrote: My very first lyme test way back in 1990 was positive.. Since then and i've been on years of treatment continuously my tests all bounce back and forth now. One time I may be negative and 2 mos later I'll be positive again.. The same thing seems to happen with my coinfections as well... Robyn In a message dated 4/6/2005 10:40:23 PM Central Standard Time, ewaroy@... writes: I am looking for some information. Several years ago I was diagnosed and treated for lyme. However, despite the treatment I continue to suffer from chronic pain, fatigue, arthritis, episcleritis and so on. Recently I asked my physician to refer me to a specialist to explore the idea of maybe lyme continuing to fester in my system. However, when I went for a blood test, the test was negative and the specialist refused to see me. " He only sees patients with positive results. " I wanted to know, if anyone out there has tested negative, yet continued to suffer from lyme or the effects of it and what he/she might have done about it. Any input would be greatly appreciated. Ewa Roy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2005 Report Share Posted April 9, 2005 I'm so glad to get the input from all of you. I do feel like crazy at times, and neglected by the medical physicians. It's reassuring to know, that others have had positive/negative results, as did I. Does anyone have a good doctor, that actually is willing to treat despite blood results. Right now I'm laid up with painful and swollen foot and bloodshot eye - both on the left side. Prior to that it was my shoulder (also left side) and after doing an MRI they discovered I had tendonitis, bursitis and athropathy. So, I was given cortisone shots. But, as I mentioned before, these different symptomps keep popping up. I hardly sleep anymore and the pain has become overwhelming despite pain medication. I live in burg, VA area, however, I would be willing to travel some distance if I could find someone that would take my case seriously. Thank you all. Ewa Lucher <lucher@...> wrote: Robyn With your yrs of treatment, testing neg/positive on test. How did/do you feel? Could you feel the positive/neg times or did you feel the same the whole time while on treatment? PrincessRobyn70@... wrote: My very first lyme test way back in 1990 was positive.. Since then and i've been on years of treatment continuously my tests all bounce back and forth now. One time I may be negative and 2 mos later I'll be positive again.. The same thing seems to happen with my coinfections as well... Robyn In a message dated 4/6/2005 10:40:23 PM Central Standard Time, ewaroy@... writes: I am looking for some information. Several years ago I was diagnosed and treated for lyme. However, despite the treatment I continue to suffer from chronic pain, fatigue, arthritis, episcleritis and so on. Recently I asked my physician to refer me to a specialist to explore the idea of maybe lyme continuing to fester in my system. However, when I went for a blood test, the test was negative and the specialist refused to see me. " He only sees patients with positive results. " I wanted to know, if anyone out there has tested negative, yet continued to suffer from lyme or the effects of it and what he/she might have done about it. Any input would be greatly appreciated. Ewa Roy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2005 Report Share Posted April 9, 2005 You're right, and I agree totally, but what frustrates me, is the fact that my primary dr. is going along with him and now won't do anything for me with regards to my theory (I've given her articles indicating tests can be negative, but the disease can still fester etc), so I continue to just take pain medication and anti-inflammatory meds with no resolution. Ewa /Rodney <rod@...> wrote: > Lyme disease is a clinical diagosis per the CDC/ Your doctor should not > refuse to treat you on a negative test. I agree, but if the Dr is that ignorant, dont know that I would want them to treat me to being with. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2005 Report Share Posted April 9, 2005 Could you travel to Canada? One or two flights and check ups and my LLMD does take on some long distance patients - email me if you need his info. Cactus Kickers - I have promised you his number too...sorry it's been a rough couple of weeks - I stil will write you. He works closely with Burrascano. He does all the Lyme media events here in Canada ( and doesn't care if he is risking his rep ) - he is a sweet man, a bit experimental ( with drug combos) Sorry, I cannot recommend anyone else closer to you. But with Canadian drug prices, maybe you could get a break on the $$$ issue. C Carmem - In , ewa roy <ewaroy@y...> wrote: > > I'm so glad to get the input from all of you. I do feel like crazy at times, and neglected by the medical physicians. It's reassuring to know, that others have had positive/negative results, as did I. Does anyone have a good doctor, that actually is willing to treat despite blood results. Right now I'm laid up with painful and swollen foot and bloodshot eye - both on the left side. Prior to that it was my shoulder (also left side) and after doing an MRI they discovered I had tendonitis, bursitis and athropathy. So, I was given cortisone shots. But, as I mentioned before, these different symptomps keep popping up. I hardly sleep anymore and the pain has become overwhelming despite pain medication. I live in burg, VA area, however, I would be willing to travel some distance if I could find someone that would take my case seriously. Thank you all. > Ewa > > Lucher <lucher@s...> wrote: > > Robyn > With your yrs of treatment, testing neg/positive on test. How did/do you feel? Could you feel the positive/neg times or did you feel the same the whole time while on treatment? > > > PrincessRobyn70@a... wrote: > > > My very first lyme test way back in 1990 was positive.. Since then and i've > been on years of treatment continuously my tests all bounce back and forth > now. One time I may be negative and 2 mos later I'll be positive again.. The > same thing seems to happen with my coinfections as well... > Robyn > > > In a message dated 4/6/2005 10:40:23 PM Central Standard Time, > ewaroy@y... writes: > > I am looking for some information. Several years ago I was diagnosed > and treated for lyme. However, despite the treatment I continue to > suffer from chronic pain, fatigue, arthritis, episcleritis and so on. > Recently I asked my physician to refer me to a specialist to explore > the idea of maybe lyme continuing to fester in my system. However, > when I went for a blood test, the test was negative and the specialist > refused to see me. " He only sees patients with positive results. " I > wanted to know, if anyone out there has tested negative, yet continued > to suffer from lyme or the effects of it and what he/she might have > done about it. Any input would be greatly appreciated. > Ewa Roy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2005 Report Share Posted April 9, 2005 I hope you find a better doctor - is this an insurance issue? ( if I may ask ) - also a reminder that now ANY anti inflammatories (advil ) are now in the risk group of causing heart problems. He should listen to you, or else you could do some serious damage. Why not tell him about that - and if he doesn't listen, some serious doc change is in the works. I had the same problem - but my LLMD phoned my doctor and explained it to him ( even though my doctor is very wary of it - my LLMD has a reputation for being quite experimental ) and is in a cloud of controversy and has barely a good reputaion left amongst his fellow 'scientists' and 'peers' ( except for DR Burrascano of course ), for promoting the prevalence of Lyme. I met a young resident last night who was inspired by him to start researching it - so please imagine, that soon some of these newer doctors will help when they graduate ( depending on the medical school of coursE ) Maybe if you find a specialist, he could do the same for you ( phone your doctor?) They listen to their peers more.....sincerest Carmen > > Lyme disease is a clinical diagosis per the CDC/ Your doctor should not > > refuse to treat you on a negative test. > > > > I agree, but if the Dr is that ignorant, dont know that I would want > them to treat me to being with. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2005 Report Share Posted April 11, 2005 My doctor up here in NJ treats people with " negative " tests;mine would be considered negative since I had 3 bands. Phil Re: [ ] Lyme Test negative I'm so glad to get the input from all of you. I do feel like crazy at times, and neglected by the medical physicians. It's reassuring to know, that others have had positive/negative results, as did I. Does anyone have a good doctor, that actually is willing to treat despite blood results. Right now I'm laid up with painful and swollen foot and bloodshot eye - both on the left side. Prior to that it was my shoulder (also left side) and after doing an MRI they discovered I had tendonitis, bursitis and athropathy. So, I was given cortisone shots. But, as I mentioned before, these different symptomps keep popping up. I hardly sleep anymore and the pain has become overwhelming despite pain medication. I live in burg, VA area, however, I would be willing to travel some distance if I could find someone that would take my case seriously. Thank you all. Ewa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2005 Report Share Posted April 11, 2005 Actually I have PPO, which does not require referral, however, it seems especially in this area (I used to live in the Northeast before), that specialists will not see you unless you have a referral from your primary doctor. Some of them even go to the extent where your doctor's office has to make the appointment on your behalf. Since I'm relatively new to the area I rely on my primary as far as referrals and recommendations. She seems pretty sympathetic, but that does not help much as far as pain is concerned. I used to have a great physician in the northeast and he would got to bat for me etc., here I feel lost and I guess that's a big part of my frustration as well. Through this network, I was lucky and received names of couple of doctors' in the area, which I plan to pursue and see if either one of them would agree to see me. Wish me luck. Thank you. Ewa --- Carmen <migragurl@...> wrote: > > I hope you find a better doctor - is this an > insurance issue? ( if I > may ask ) - also a reminder that now ANY anti > inflammatories > (advil ) are now in the risk group of causing heart > problems. He > should listen to you, or else you could do some > serious damage. > > Why not tell him about that - and if he doesn't > listen, some > serious doc change is in the works. I had the same > problem - but my > LLMD phoned my doctor and explained it to him ( even > though my > doctor is very wary of it - my LLMD has a reputation > for being quite > experimental ) and is in a cloud of controversy and > has barely a > good reputaion left amongst his fellow 'scientists' > and 'peers' > ( except for DR Burrascano of course ), for > promoting the prevalence > of Lyme. > I met a young resident last night who was inspired > by him to start > researching it - so please imagine, that soon some > of these newer > doctors will help when they graduate ( > depending on the > medical school of coursE ) Maybe if you find a > specialist, he could > do the same for you ( phone your doctor?) They > listen to their peers > more.....sincerest Carmen > > > > > Lyme disease is a clinical diagosis per the CDC/ > Your doctor > should not > > > refuse to treat you on a negative test. > > > > > > > > I agree, but if the Dr is that ignorant, dont > know that I > would want > > them to treat me to being with. > > > > __________________________________ Mobile Take with you! Check email on your mobile phone. http://mobile./learn/mail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2005 Report Share Posted April 11, 2005 Yes, I would travel as far as Canada, however, Ann gave me a couple of names in this area, so I'm going to try them first. But, I do thank you for the information, and I will certainly keep you in mind should this doesn't work work (if you don't mind). Thank you for thinking of me. Ewa --- Carmen <migragurl@...> wrote: > > Could you travel to Canada? One or two flights and > check ups and my > LLMD does take on some long distance patients - > email me if you need > his info. Cactus Kickers - I have promised you his > number > too...sorry it's been a rough couple of weeks - I > stil will write > you. He works closely with Burrascano. He does all > the Lyme media > events here in Canada ( and doesn't care if he is > risking his rep ) - > he is a sweet man, a bit experimental ( with drug > combos) > > Sorry, I cannot recommend anyone else closer to you. > But with > Canadian drug prices, maybe you could get a break on > the $$$ issue. > > C > > Carmem > - In , ewa roy <ewaroy@y...> > wrote: > > > > I'm so glad to get the input from all of you. I do > feel like crazy > at times, and neglected by the medical physicians. > It's reassuring > to know, that others have had positive/negative > results, as did I. > Does anyone have a good doctor, that actually is > willing to treat > despite blood results. Right now I'm laid up with > painful and > swollen foot and bloodshot eye - both on the left > side. Prior to > that it was my shoulder (also left side) and after > doing an MRI they > discovered I had tendonitis, bursitis and > athropathy. So, I was > given cortisone shots. But, as I mentioned before, > these different > symptomps keep popping up. I hardly sleep anymore > and the pain has > become overwhelming despite pain medication. I live > in burg, > VA area, however, I would be willing to travel some > distance if I > could find someone that would take my case > seriously. Thank you all. > > Ewa > > > > Lucher <lucher@s...> wrote: > > > > Robyn > > With your yrs of treatment, testing neg/positive > on test. How > did/do you feel? Could you feel the positive/neg > times or did you > feel the same the whole time while on treatment? > > > > > > PrincessRobyn70@a... wrote: > > > > > > My very first lyme test way back in 1990 was > positive.. Since then > and i've > > been on years of treatment continuously my tests > all bounce back > and forth > > now. One time I may be negative and 2 mos later > I'll be positive > again.. The > > same thing seems to happen with my coinfections as > well... > > Robyn > > > > > > In a message dated 4/6/2005 10:40:23 PM Central > Standard Time, > > ewaroy@y... writes: > > > > I am looking for some information. Several years > ago I was > diagnosed > > and treated for lyme. However, despite the > treatment I continue to > > suffer from chronic pain, fatigue, arthritis, > episcleritis and so > on. > > Recently I asked my physician to refer me to a > specialist to > explore > > the idea of maybe lyme continuing to fester in my > system. However, > > when I went for a blood test, the test was > negative and the > specialist > > refused to see me. " He only sees patients with > positive results. " I > > wanted to know, if anyone out there has tested > negative, yet > continued > > to suffer from lyme or the effects of it and what > he/she might have > > done about it. Any input would be greatly > appreciated. > > Ewa Roy > > > > __________________________________ Mobile Take with you! Check email on your mobile phone. http://mobile./learn/mail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2005 Report Share Posted May 14, 2005 I did, I just went on to the next, becuase a good doc will know that once you are exposed you are exposed. Don't give up...eve Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.