Guest guest Posted May 3, 2005 Report Share Posted May 3, 2005 I forgot: - I suspect a portion of my improvement is due to change of season - my IGeneX WB was equivocal - full text of Dontas treatment studies " tetracycline therapy for chronic lyme disease " and " macrolide therapy of chronic lyme disease " are not in pubmed but can be found in 10 min or so using google. Youll find he included people in the study based on a very simple symptom evaluation, and excluded people carrying an " autoimmune " dx such as lupus, but did not exclude those carrying FMS or CFS -- In infections , " Hodologica " <usenethod@y...> wrote: > Like most people I have 10000000 sx, but the worst were heavy > anxiety, extreme malasie / constitutional pain, extreme fatigue, > sleep disturbance, hyperesthesia (usually totally couldnt sit at a > table for dinner with my parents & sister - too overwhelming)... > > Evaluating my improvement is difficult because early in my illness > (last summer) I once had a 3-week remission, pre-abx, where I was > fine-ish. Then I got much worse all over again. But I still had > pretty severe hyperactive mentation during the remission. My brain > had verbal thoughts, with or without my will, every single second I > was awake. > > This has gone away on long-term abx. Also, in fine weather most of > my sx are usually almost as good as they were during the spontaneous > remission. During most bad-weather days or sometimes just for no > reason, I am crushingly depressed, with " virus-like " malaise. I can > walk 4 miles or so regardless of how I feel - which is about 2-3x as > good as during my first months of abx. Altogether, I feel pretty > horrible, but probably 70% improved (whatever that means exactly) > over how I was all last summer and fall minus the spontaneous > remission. I was pretty damn bad. I'm not doing any antidepressants > or palliatives now, but probably will soon-ish. > > The clinical studies lit re long term abx for lyme has the work of S > Donta on one hand and the New England Journal O'Medicine study by > Klempner et al on the other (which apparantly showed no benefit). > There is substantial acrimony between the > clinician/investigator " camps " to which these workers belong, and I > think there is furthermore really a lack of trust about what the > other party is observing. I feel little trust for the NEJM result > myself, but I never even took the time to go over its methodology, > since I personally, for the purposes of choosing my own treatment, > judge the value of long-term abx to be very well attested in > informal media by intelligent patients and clinicians. (Plus I know > from multiple peer-reviewed papers that the assertion that the > infection is easily eradicated by abx is a horrible lie.) > > Donta cites a no-substantial-improvement rate of ~25% for his > particular regimes (which are not combo therapies). > > > > > Thanks for the information, Duramater..Is Lymenet considered the > best site > > to get up to speed on :Lyme? You guys are so far ahead.. > > > > And, if you don't mind me asking, Have you seen neurological > improvement > > (in which areas) when using ABX, and if so, which ones? (I have > not had a > > doc who would give long term ABX) > > > > TIA, > > Carol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2005 Report Share Posted May 4, 2005 Where does one find the Wheldon/Stratton Protocol? It is not in the files, here, is it? Can you elaborate on Dontas? Just trying to learn, here... > [Original Message] > From: Hodologica <usenethod@...> > <infections > > Date: 5/3/2005 4:44:13 PM > Subject: [infections] Carol - addenda > > I forgot: > > - I suspect a portion of my improvement is due to change of season > > - my IGeneX WB was equivocal > > - full text of Dontas treatment studies " tetracycline therapy for > chronic lyme disease " and " macrolide therapy of chronic lyme disease " > are not in pubmed but can be found in 10 min or so using google. Youll > find he included people in the study based on a very simple symptom > evaluation, and excluded people carrying an " autoimmune " dx such as > lupus, but did not exclude those carrying FMS or CFS > > > -- In infections , " Hodologica " > <usenethod@y...> wrote: > > Like most people I have 10000000 sx, but the worst were heavy > > anxiety, extreme malasie / constitutional pain, extreme fatigue, > > sleep disturbance, hyperesthesia (usually totally couldnt sit at a > > table for dinner with my parents & sister - too overwhelming)... > > > > Evaluating my improvement is difficult because early in my illness > > (last summer) I once had a 3-week remission, pre-abx, where I was > > fine-ish. Then I got much worse all over again. But I still had > > pretty severe hyperactive mentation during the remission. My brain > > had verbal thoughts, with or without my will, every single second I > > was awake. > > > > This has gone away on long-term abx. Also, in fine weather most of > > my sx are usually almost as good as they were during the spontaneous > > remission. During most bad-weather days or sometimes just for no > > reason, I am crushingly depressed, with " virus-like " malaise. I can > > walk 4 miles or so regardless of how I feel - which is about 2-3x as > > good as during my first months of abx. Altogether, I feel pretty > > horrible, but probably 70% improved (whatever that means exactly) > > over how I was all last summer and fall minus the spontaneous > > remission. I was pretty damn bad. I'm not doing any antidepressants > > or palliatives now, but probably will soon-ish. > > > > The clinical studies lit re long term abx for lyme has the work of S > > Donta on one hand and the New England Journal O'Medicine study by > > Klempner et al on the other (which apparantly showed no benefit). > > There is substantial acrimony between the > > clinician/investigator " camps " to which these workers belong, and I > > think there is furthermore really a lack of trust about what the > > other party is observing. I feel little trust for the NEJM result > > myself, but I never even took the time to go over its methodology, > > since I personally, for the purposes of choosing my own treatment, > > judge the value of long-term abx to be very well attested in > > informal media by intelligent patients and clinicians. (Plus I know > > from multiple peer-reviewed papers that the assertion that the > > infection is easily eradicated by abx is a horrible lie.) > > > > Donta cites a no-substantial-improvement rate of ~25% for his > > particular regimes (which are not combo therapies). > > > > > > > > > Thanks for the information, Duramater..Is Lymenet considered the > > best site > > > to get up to speed on :Lyme? You guys are so far ahead.. > > > > > > And, if you don't mind me asking, Have you seen neurological > > improvement > > > (in which areas) when using ABX, and if so, which ones? (I have > > not had a > > > doc who would give long term ABX) > > > > > > TIA, > > > Carol > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2005 Report Share Posted May 4, 2005 >You'll find he [Donta] included people in the study based on a very simple symptom evaluation, and excluded people carrying an " autoimmune " dx such as lupus, but did not exclude those carrying FMS or CFS Hi , As I recall, he also excluded people who were PCR positive for B. burgdorferei. Sue , Upstate New York Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2005 Report Share Posted May 4, 2005 >The clinical studies lit re long term abx for lyme has the work of S >Donta on one hand and the New England Journal O'Medicine study by >Klempner et al on the other (which apparantly showed no benefit). Hi , Sorry. I got Donta and Klempner confused in my last post. I think Klempner was the one who excluded patients who were PCR positive, but it has been a long time since I read the full paper. Do you remember if he did that? Sue , Upstate New York Quote Link to comment Share on other sites More sharing options...
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