Guest guest Posted May 24, 2007 Report Share Posted May 24, 2007 Good question Barb. In the meantime, tell Fallon to call me. I can give him the answer to his questions: It's a low grade, chronic infection, Mr. Psychiatrist! it's not "post infection syndrome" or messed up "brain circuitry". I'm glad he's opening a center and did the study which shows the illness at least initially responding to the abx therapy. But I just can't get over these doctors who will still even put it out there as a possibility that it could have a neuro/psychiatric cause or be a "post infection syndrome". Or even that 6 months should definitely be considered "long term therapy" against a disease this intractable. He'd do people more of a service if he'd just leave off the unfounded speculation. This just shows why we need real infectious disease specialists doing these studies. Doctors who see infections on a daily basis, not psychiatrists and other docs who have too little real time experience with infections in general. penny Barb Peck <egroups1bp@...> wrote: Basically I think Fallons study was well done. I Want to know if at the end of the 6 months if the people were tesing positive? Has any body read this whole study???BarbFrom Euro Lyme:..."the antibiotics worked initially on reducing pain, fatigue and mental fog,but six months later patients were no better than those who did not receivelong-term therapy"...http://www6.lexisnexis.com/publisher/EndUser?Action=UserDisplayFullDocument & orgI\d=2499 & topicId=100015118 & docId=l:615922493..."Earlier this month, scientists at Columbia University Medical Schoolannounced the opening of the Lyme and Tick-Borne Diseases Research Center,established with a $3-million gift from two of these organizations, Time forLyme and the Lyme Disease Association.Heading the new institute is Dr. Fallon, a scientist who says that hewants to address the controversy head-on and develop a test that will identifyactive infection.Back in the late 1990s, Fallon was awarded $5 million in federal grants toconduct a long-term antibiotic study and collect brain scans from thesepatients. The study, finished two years ago, is under review by a majorscientific journal, Fallon said. Now he's hoping to unravel the mysteries ofchronic Lyme by bringing experts from all walks of science into the fray.More studies needed"There has been very little done on chronic Lyme disease," he said earlier thismonth at a conference sponsored by Columbia. "Mothers are powerful people," hesaid, pointing to the women who started the organizations after their childrenwere diagnosed with chronic Lyme infections.Fallon, an associate professor of clinical psychiatry at Columbia, said that inthe study the antibiotics worked initially on reducing pain, fatigue and mentalfog, but six months later patients were no better than those who did not receivelong-term therapy."I would have loved for it to work out, but it didn't," Fallon said. He said hedid find evidence of an abnormal circuitry on the brain scans of some of thosewith chronic Lyme disease, and the abnormality did not change with theantibiotic treatment."It's uncertain whether it is a low-grade chronic infection or a post-infectionsyndrome," he said. "But the patient community is sick, and for a long time itwasn't acknowleged.""..... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2007 Report Share Posted May 24, 2007 Barb, The study has not been published yet. Given that reality I wish Fallon had refused to discuss it at all, because the news is shooting us in the foot. My understanding which could be mistaken since the study is not in print yet, is that he used IV Rocephin for the six months. Needless to say, many are going to relapse or gradually not respond to rocephin. My kindest take on this is that Fallon was under the control of the NIH and could not make the study more complex, say using multiple antibiotics etc. This reminds me of the VA study of the sick veterans who had mycoplasmas. They were given only doxycycline for a year. Again, obvious to those of us on this list, they were not going to recover and would start relapsing before they even finished the year. I just hope Fallon can turn this around and make some good come out of it. The Lyme community is already being broadsided for suggesting longterm antibiotics for chronic Lyme - as if it did not exist ie you either got well on two to four weeks of antibiotics or you turned into some other disease such as cfs. a Carnes > > > > Basically I think Fallons study was well done. > > > I Want to know if at the end of the 6 months if the people were > tesing positive? Has any body read this whole study??? > > > Barb > > From Euro Lyme: > > ... " the antibiotics worked initially on reducing pain, fatigue and > mental fog, > but six months later patients were no better than those who did not > receive > long-term therapy " ... > > http://www6.lexisnexis.com/publisher/EndUser? > Action=UserDisplayFullDocument & orgI\ > d=2499 & topicId=100015118 & docId=l:615922493 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2007 Report Share Posted May 25, 2007 Guys what happenend to the famous 'herx'..Ain't you supposed to initially feel better then start herxing..Instead of my understanding about infections,that infections often need to be cleaned out as well as attacked by antibiotics. There's also this huge problem of UNDERMEDICATING these infections. which is CLEARLY the problem we are all facing, because encepphalitis manifesting acutely gets the harshest antibiotics protocols on the planet.Imagine upto 80 grams a day of penicillin not to mention throwing in a 2 and third drug.This as opposed to PAula's current attempt which may have been 2 grams a day of penicillin.. if that.. So to see the post lyme antibiotic study fail with possably doxy being the drug of choice, is an acceptable outcome to anyone familiar with infection treatment.. > > > Basically I think Fallons study was well done. > > I Want to know if at the end of the 6 months if the people were > tesing positive? Has any body read this whole study??? > > Barb > > From Euro Lyme: > > ... " the antibiotics worked initially on reducing pain, fatigue and > mental fog, > but six months later patients were no better than those who did not > receive > long-term therapy " ... > > http://www6.lexisnexis.com/publisher/EndUser? > Action=UserDisplayFullDocument & orgI\ > d=2499 & topicId=100015118 & docId=l:615922493 > > ... " Earlier this month, scientists at Columbia University Medical > School > announced the opening of the Lyme and Tick-Borne Diseases Research > Center, > established with a $3-million gift from two of these organizations, > Time for > Lyme and the Lyme Disease Association. > > Heading the new institute is Dr. Fallon, a scientist who says > that he > wants to address the controversy head-on and develop a test that will > identify > active infection. > > Back in the late 1990s, Fallon was awarded $5 million in federal > grants to > conduct a long-term antibiotic study and collect brain scans from > these > patients. The study, finished two years ago, is under review by a > major > scientific journal, Fallon said. Now he's hoping to unravel the > mysteries of > chronic Lyme by bringing experts from all walks of science into the > fray. > > More studies needed > > " There has been very little done on chronic Lyme disease, " he said > earlier this > month at a conference sponsored by Columbia. " Mothers are powerful > people, " he > said, pointing to the women who started the organizations after their > children > were diagnosed with chronic Lyme infections. > > Fallon, an associate professor of clinical psychiatry at Columbia, > said that in > the study the antibiotics worked initially on reducing pain, fatigue > and mental > fog, but six months later patients were no better than those who did > not receive > long-term therapy. > > " I would have loved for it to work out, but it didn't, " Fallon said. > He said he > did find evidence of an abnormal circuitry on the brain scans of some > of those > with chronic Lyme disease, and the abnormality did not change with the > antibiotic treatment. > > " It's uncertain whether it is a low-grade chronic infection or a post- > infection > syndrome, " he said. " But the patient community is sick, and for a > long time it > wasn't acknowleged. " > " ..... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2007 Report Share Posted May 25, 2007 Tony, I believe the study was 6 months of IV Rocephin. I am taking 2 grams of Valcyte and 500 mg of Zithromax a day right now. Prior to that I took diflucan and penicillin for 3 months - don't recall the dose. a Carnes > > Guys what happenend to the famous 'herx'..Ain't you supposed to > initially feel better then start herxing..Instead of my understanding > about infections,that infections often need to be cleaned out as well > as attacked by antibiotics. There's also this huge problem of > UNDERMEDICATING these infections. which is CLEARLY the problem we are > all facing, because encepphalitis manifesting acutely gets the > harshest antibiotics protocols on the planet.Imagine upto 80 grams a > day of penicillin not to mention throwing in a 2 and third drug.This > as opposed to PAula's current attempt which may have been 2 grams a > day of penicillin.. if that.. > So to see the post lyme antibiotic study fail with possably doxy > being the drug of choice, is an acceptable outcome to anyone familiar > with infection treatment.. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2007 Report Share Posted May 25, 2007 a I'm trying to make the point that serious infections of the head get the top scale end of the treatment spectrum- being chronic and festering for many years needs to be UNDERSTOOD AND TREATED ACCORDINGLY...I tried to make the point that in your own case having possably been the last one on this forum to indulge in penicillin you may have gotten the usual top daily dose of 2 grams, yet a stiff neck meningitis person in a hospital setting may normally get 20 if not 40 times as much penicillin. The rocephin is such a croc of crap drug.. it's only being used extensively because it shows some promise in minimal 2 or 3 day therapy in the hospital setting.I actually felt cured after a few days of rocephin but the bugs that came back, came back angry by the end of the week and all the rocephin was doing on day 5 was annoying them even more.....yet I should have thrown my hat in the air and celebrated the normal procedure on autoimmune forums, the HERX..It's funny how me being a goose interpreted the experience as DRUG WORKING FEW DAYS_ BUGS TURNING RESISTANT_ TREATMENT NO GOOD.. Golly gosh! to my surprise since this event haven't heard an infectious disease doctor or orthopedic doctors ever say they are satisfied with this drug- they call it useless in infection of the bone...This may have a lot to do with the easy dosing afforded to doctors, once or twice daily maximum 2 grams a day as opposed to real therapy with cefazolin allowing 4 times a day administration and 12 grams plus a day.Or better still cephalothin at 4 times a day dosing upto 20 grams administration. These latter drugs where the drugs that saw infections being conquered before today's crisis- croc therapies... > > Tony, I believe the study was 6 months of IV Rocephin. > > I am taking 2 grams of Valcyte and 500 mg of Zithromax a day right > now. Prior to that I took diflucan and penicillin for 3 months - > don't recall the dose. > > a Carnes > > > > > > Guys what happenend to the famous 'herx'..Ain't you supposed to > > initially feel better then start herxing..Instead of my > understanding > > about infections,that infections often need to be cleaned out as > well > > as attacked by antibiotics. There's also this huge problem of > > UNDERMEDICATING these infections. which is CLEARLY the problem we > are > > all facing, because encepphalitis manifesting acutely gets the > > harshest antibiotics protocols on the planet.Imagine upto 80 grams > a > > day of penicillin not to mention throwing in a 2 and third > drug.This > > as opposed to PAula's current attempt which may have been 2 grams a > > day of penicillin.. if that.. > > So to see the post lyme antibiotic study fail with possably doxy > > being the drug of choice, is an acceptable outcome to anyone > familiar > > with infection treatment.. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2007 Report Share Posted May 25, 2007 You understood that the IV rocephin is what Fallon used for six months in his Lyme study. I think he was forced to do what the NIH would approve. I have never taken rocephin. I have an appointment with a neurologist June 4, and I plan to bring up the possible staph colonization and which antibiotics I was not resistant to. Meanwhile I am taking the Valtrex and Zithromax. The headache has been somewhat better for almost 2 weeks now, but I, of course, don't know if the coffee is helping or the 2 medications or??? a > > a > I'm trying to make the point that serious infections of the head get > the top scale end of the treatment spectrum- being chronic and > festering for many years needs to be UNDERSTOOD AND TREATED > ACCORDINGLY...I tried to make the point that in your own case having > possably been the last one on this forum to indulge in penicillin you > may have gotten the usual top daily dose of 2 grams, yet a stiff neck > meningitis person in a hospital setting may normally get 20 if not 40 > times as much penicillin. > The rocephin is such a croc of crap drug.. it's only being used > extensively because it shows some promise in minimal 2 or 3 day > therapy in the hospital setting.I actually felt cured after a few > days of rocephin but the bugs that came back, came back angry by the > end of the week and all the rocephin was doing on day 5 was annoying > them even more.....yet I should have thrown my hat in the air and > celebrated the normal procedure on autoimmune forums, the HERX..It's > funny how me being a goose interpreted the experience as DRUG WORKING > FEW DAYS_ BUGS TURNING RESISTANT_ TREATMENT NO GOOD.. > Golly gosh! to my surprise since this event haven't heard an > infectious disease doctor or orthopedic doctors ever say they are > satisfied with this drug- they call it useless in infection of the > bone...This may have a lot to do with the easy dosing afforded to > doctors, once or twice daily maximum 2 grams a day as opposed to real > therapy with cefazolin allowing 4 times a day administration and 12 > grams plus a day.Or better still cephalothin at 4 times a day dosing > upto 20 grams administration. These latter drugs where the drugs that > saw infections being conquered before today's crisis- croc > therapies... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2007 Report Share Posted May 25, 2007 Good point. Never hear about "herxing" from infectious disease specialists. Certainly not at the mythological levels we hear about them in the pwc community. And Rocephin? I mean how far removed from the real world must you be to not know what pretty much everyone knows...that Rocephin has not been working for quite a while now? pennydumbaussie2000 <dumbaussie2000@...> wrote: Guys what happenend to the famous 'herx'..Ain't you supposed to initially feel better then start herxing..Instead of my understanding about infections,that infections often need to be cleaned out as well as attacked by antibiotics. There's also this huge problem of UNDERMEDICATING these infections. which is CLEARLY the problem we are all facing, because encepphalitis manifesting acutely gets the harshest antibiotics protocols on the planet.Imagine upto 80 grams a day of penicillin not to mention throwing in a 2 and third drug.This as opposed to PAula's current attempt which may have been 2 grams a day of penicillin.. if that..So to see the post lyme antibiotic study fail with possably doxy being the drug of choice, is an acceptable outcome to anyone familiar with infection treatment..> > > Basically I think Fallons study was well done. > > I Want to know if at the end of the 6 months if the people were > tesing positive? Has any body read this whole study???> > Barb> > From Euro Lyme:> > ..."the antibiotics worked initially on reducing pain, fatigue and > mental fog,> but six months later patients were no better than those who did not > receive> long-term therapy"...> > http://www6.lexisnexis.com/publisher/EndUser?> Action=UserDisplayFullDocument & orgI\> d=2499 & topicId=100015118 & docId=l:615922493> > ..."Earlier this month, scientists at Columbia University Medical > School> announced the opening of the Lyme and Tick-Borne Diseases Research > Center,> established with a $3-million gift from two of these organizations, > Time for> Lyme and the Lyme Disease Association.> > Heading the new institute is Dr. Fallon, a scientist who says > that he> wants to address the controversy head-on and develop a test that will > identify> active infection.> > Back in the late 1990s, Fallon was awarded $5 million in federal > grants to> conduct a long-term antibiotic study and collect brain scans from > these> patients. The study, finished two years ago, is under review by a > major> scientific journal, Fallon said. Now he's hoping to unravel the > mysteries of> chronic Lyme by bringing experts from all walks of science into the > fray.> > More studies needed> > "There has been very little done on chronic Lyme disease," he said > earlier this> month at a conference sponsored by Columbia. "Mothers are powerful > people," he> said, pointing to the women who started the organizations after their > children> were diagnosed with chronic Lyme infections.> > Fallon, an associate professor of clinical psychiatry at Columbia, > said that in> the study the antibiotics worked initially on reducing pain, fatigue > and mental> fog, but six months later patients were no better than those who did > not receive> long-term therapy.> > "I would have loved for it to work out, but it didn't," Fallon said. > He said he> did find evidence of an abnormal circuitry on the brain scans of some > of those> with chronic Lyme disease, and the abnormality did not change with the> antibiotic treatment.> > "It's uncertain whether it is a low-grade chronic infection or a post-> infection> syndrome," he said. "But the patient community is sick, and for a > long time it> wasn't acknowleged."> ".....> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2007 Report Share Posted May 25, 2007 One thing I notice about you a, is you always go back to Zithromax. That indicates to me that somehow you intuitively feel that it can still help you at least a little bit. My guess is it's just not enough on its own, or in the amounts you take. You probably need to combine it with another drug or 2, based on your testing, to seriously impact the infection you've got. I wish I could take more penicillin than I do. I know it helps. The problem is, when I increase it too much, then I start experiencing fungal growth which increases my fatigue levels, etc. Since I really can't take any more anti-fungals than I'm taking, I'm constantly doing a balancing act between the anti-fungals, the penicillin, and any other non-abx antimicrobial therapies I can think of. It's kind of tricky to find that perfect balance. I now can see that the smallest change in my environment can tip the balance completely. For example, I went to San Francisco for a long weekend and ended up with a nasty cold which turned into a sinus infection which increased my fatigue levels long after the cold was gone. One thing I can say for the surgery is that when I've got a sinus infection now, at least I know it because now I get the normal symptoms that I never got before. Now I can see a direct link between the activated infection and an increase in my fatigue, queasiness, headaches etc. So maybe instead of being angry that I now experience sinus infections after my surgery, maybe I should be grateful because it's probably better to know that I can link the symptoms to an obvious flare up of my infection. Before the surgery, my health ups and downs just seemed completely random and linked to nothing detectable...which is actually what I think is happening to a lot of PWC. penny pjeanneus <pj7@...> wrote: You understood that the IV rocephin is what Fallon used for six months in his Lyme study. I think he was forced to do what the NIH would approve. I have never taken rocephin.I have an appointment with a neurologist June 4, and I plan to bring up the possible staph colonization and which antibiotics I was not resistant to. Meanwhile I am taking the Valtrex and Zithromax. The headache has been somewhat better for almost 2 weeks now, but I, of course, don't know if the coffee is helping or the 2 medications or???a>> a> I'm trying to make the point that serious infections of the head get > the top scale end of the treatment spectrum- being chronic and > festering for many years needs to be UNDERSTOOD AND TREATED > ACCORDINGLY...I tried to make the point that in your own case having > possably been the last one on this forum to indulge in penicillin you > may have gotten the usual top daily dose of 2 grams, yet a stiff neck > meningitis person in a hospital setting may normally get 20 if not 40 > times as much penicillin.> The rocephin is such a croc of crap drug.. it's only being used > extensively because it shows some promise in minimal 2 or 3 day > therapy in the hospital setting.I actually felt cured after a few > days of rocephin but the bugs that came back, came back angry by the > end of the week and all the rocephin was doing on day 5 was annoying > them even more.....yet I should have thrown my hat in the air and > celebrated the normal procedure on autoimmune forums, the HERX..It's > funny how me being a goose interpreted the experience as DRUG WORKING > FEW DAYS_ BUGS TURNING RESISTANT_ TREATMENT NO GOOD..> Golly gosh! to my surprise since this event haven't heard an > infectious disease doctor or orthopedic doctors ever say they are > satisfied with this drug- they call it useless in infection of the > bone...This may have a lot to do with the easy dosing afforded to > doctors, once or twice daily maximum 2 grams a day as opposed to real > therapy with cefazolin allowing 4 times a day administration and 12 > grams plus a day.Or better still cephalothin at 4 times a day dosing > upto 20 grams administration. These latter drugs where the drugs that > saw infections being conquered before today's crisis- croc > therapies... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2007 Report Share Posted May 25, 2007 Penny ther's something about zithro it hit my lower back pain like no other drug.Each drug has it's favourtite destination thru the gastrointestinal tract and the bloodstream...But you still need a bit of science to watch what's going on with your trillion organisms. > You understood that the IV rocephin is what Fallon used for six > months in his Lyme study. I think he was forced to do what the NIH > would approve. I have never taken rocephin. > > I have an appointment with a neurologist June 4, and I plan to bring > up the possible staph colonization and which antibiotics I was not > resistant to. Meanwhile I am taking the Valtrex and Zithromax. The > headache has been somewhat better for almost 2 weeks now, but I, of > course, don't know if the coffee is helping or the 2 medications or??? > > a > > > > > a > > I'm trying to make the point that serious infections of the head > get > > the top scale end of the treatment spectrum- being chronic and > > festering for many years needs to be UNDERSTOOD AND TREATED > > ACCORDINGLY...I tried to make the point that in your own case > having > > possably been the last one on this forum to indulge in penicillin > you > > may have gotten the usual top daily dose of 2 grams, yet a stiff > neck > > meningitis person in a hospital setting may normally get 20 if not > 40 > > times as much penicillin. > > The rocephin is such a croc of crap drug.. it's only being used > > extensively because it shows some promise in minimal 2 or 3 day > > therapy in the hospital setting.I actually felt cured after a few > > days of rocephin but the bugs that came back, came back angry by > the > > end of the week and all the rocephin was doing on day 5 was > annoying > > them even more.....yet I should have thrown my hat in the air and > > celebrated the normal procedure on autoimmune forums, the > HERX..It's > > funny how me being a goose interpreted the experience as DRUG > WORKING > > FEW DAYS_ BUGS TURNING RESISTANT_ TREATMENT NO GOOD.. > > Golly gosh! to my surprise since this event haven't heard an > > infectious disease doctor or orthopedic doctors ever say they are > > satisfied with this drug- they call it useless in infection of the > > bone...This may have a lot to do with the easy dosing afforded to > > doctors, once or twice daily maximum 2 grams a day as opposed to > real > > therapy with cefazolin allowing 4 times a day administration and 12 > > grams plus a day.Or better still cephalothin at 4 times a day > dosing > > upto 20 grams administration. These latter drugs where the drugs > that > > saw infections being conquered before today's crisis- croc > > therapies... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2007 Report Share Posted May 25, 2007 Penny and Tony, What I realized when I " joined " the Lyme community in 2003 was that they are the real world, and they don't know what we learned several years ago from listening to Dr. Nicolson, Leslee Dudley and the rheumatic.org MDs. Fallon and others know to use high dose, longterm antibiotics, but they don't know which ones. They used to really push the quinolones because, if they worked, they really worked. Then people like me started talking about tendon and CNS damage. Now you don't hear the Lyme docs mentioning quinolones. BUT THEY NEVER STAND UP AT A CONFERENCE AND SAY THAT ROCEPHIN DIDN'T WORK OR THAT QUINOLONES ARE RISKY. As a result things change slowly. Where Fallon five years ago may have thought IV rocephin was cutting eddge, now he knows it doesn't even work. Trouble is his study may sink the ship just like the VA doxy study for mycoplasma sunk the whole concept of mcyoplasma even being and issue, let alone whether doxy was the cure. We are in a mess for sure. a Carnes > > Good point. Never hear about " herxing " from infectious disease specialists. Certainly not at the mythological levels we hear about them in the pwc community. > > And Rocephin? I mean how far removed from the real world must you be to not know what pretty much everyone knows...that Rocephin has not been working for quite a while now? > > penny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2007 Report Share Posted May 25, 2007 My use of Zithromax has little to do with intuition. It is hands down the drug of choice for me and also my husband. I respond to it so well that my Lyme specialist doc decided I have/had babesia and added Mepron. I have taken many antibiotics at high dose for extensive periods of time. Zithromax is quite simply the antibiotic which worked for me. Does it still work? Not for the new issue of the past year, the head pressure. One thing I have picked up on from you is to go back to the staph testing I had done awhile ago and see if there is an antibiotic in the non-resistant list that might clear the head pressure. It is so annoying that prior to the headache starting a year ago I would have said I was completely recovered. On the few days when the head pressure let up this past year I felt completely well and normal. I have no other symptoms but the head pressure and vertigo with the vestibular nerve damage. Something caused the vestibular nerve damage. The logical choice would be the staph infection but limited to ??????? See, it was never bad enough for the neuro to label it encephilitis or meningitis but it has always seemed like a mild case of same to me. a > > One thing I notice about you a, is you always go back to Zithromax. That indicates to me that somehow you intuitively feel that it can still help you at least a little bit. My guess is it's just not enough on its own, or in the amounts you take. You probably need to combine it with another drug or 2, based on your testing, to seriously impact the infection you've got. > > I wish I could take more penicillin than I do. I know it helps. The problem is, when I increase it too much, then I start experiencing fungal growth which increases my fatigue levels, etc. Since I really can't take any more anti-fungals than I'm taking, I'm constantly doing a balancing act between the anti-fungals, the penicillin, and any other non-abx antimicrobial therapies I can think of. > > It's kind of tricky to find that perfect balance. I now can see that the smallest change in my environment can tip the balance completely. For example, I went to San Francisco for a long weekend and ended up with a nasty cold which turned into a sinus infection which increased my fatigue levels long after the cold was gone. One thing I can say for the surgery is that when I've got a sinus infection now, at least I know it because now I get the normal symptoms that I never got before. Now I can see a direct link between the activated infection and an increase in my fatigue, queasiness, headaches etc. So maybe instead of being angry that I now experience sinus infections after my surgery, maybe I should be grateful because it's probably better to know that I can link the symptoms to an obvious flare up of my infection. Before the surgery, my health ups and downs just seemed completely random and linked to nothing detectable...which is actually what I think is happening to a > lot of PWC. > > penny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2007 Report Share Posted May 25, 2007 Tony, Same for my husband. Completely cured his sciatica, also prostate inflammation. He has borrelia. He takes 500 mg every other day for years now. a > > Penny > ther's something about zithro it hit my lower back pain like no other > drug.Each drug has it's favourtite destination thru the > gastrointestinal tract and the bloodstream...But you still need a bit > of science to watch what's going on with your trillion organisms. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2007 Report Share Posted May 25, 2007 I once watched a lengthy video of Fallon lecturing. He seemed very nice and very down to earth, and pretty convinced that he's seen his treatments do a lot of good in at least some cases (which is not necessarily inconsistent with a failure to reach statistical significance in his clinical trial). I'd trust Fallon to do this study more than just about anyone; what would an ID specialist do better? If in fact it was ceftriaxone monotherapy, it might not be the study I would want done. But as a mentioned, it might be that NIH would be unwilling to back a 3 or 4 drug study. If the study methodology looks good when I read the full text, then I would be willing to rely on it to support moving ceftriaxone substantially further down my list - though you'll never really know about ceftriaxone for certain unless you just try it out on your own case. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2007 Report Share Posted May 25, 2007 a give up the guestimation diagnosis- deal with what's there. I believe the zithro may help p-acnes and also be congregating in the lower back in high enough concentration to take care of anything else.you have to stop using pathetic information which any9ne can buy as your husband and your diagnosis. The irony is he may have spirochetes and not be ill at all from those yet suffering from the general quagnmire of sympotoms that everyyone in his age group suffers from.... > > Tony, > Same for my husband. Completely cured his sciatica, also prostate > inflammation. He has borrelia. He takes 500 mg every other day for > years now. > > a > > > > > > Penny > > ther's something about zithro it hit my lower back pain like no > other > > drug.Each drug has it's favourtite destination thru the > > gastrointestinal tract and the bloodstream...But you still need a > bit > > of science to watch what's going on with your trillion organisms. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2007 Report Share Posted May 25, 2007 , My son did just great on 4 months of some oral form of ceftriaxone, but he is not over borrelia. He just takes tons of garlic pills to hold his own. I wouldn't be surprised if we just plain have no cure for borrelia. But the other half of this problem is that we don't have a good way to tell if a person is still actively infected. I'm not telling anyone anything new here. a > > > I once watched a lengthy video of Fallon lecturing. > > He seemed very nice and very down to earth, and pretty convinced that > he's seen his treatments do a lot of good in at least some cases > (which is not necessarily inconsistent with a failure to reach > statistical significance in his clinical trial). > > I'd trust Fallon to do this study more than just about anyone; what > would an ID specialist do better? If in fact it was ceftriaxone > monotherapy, it might not be the study I would want done. But as a > mentioned, it might be that NIH would be unwilling to back a 3 or 4 > drug study. If the study methodology looks good when I read the full > text, then I would be willing to rely on it to support moving > ceftriaxone substantially further down my list - though you'll never > really know about ceftriaxone for certain unless you just try it out > on your own case. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2007 Report Share Posted May 25, 2007 Tony, give up your guestimating - you might be suffering from rickettsia, babesia,borrelia, mycoplasma and c.pulmoni. You think what you see in your basement microscope is what is making you sick. None of us have a clue. All I am stating is that for me and my husband Zithromax clearly works to some extent. Also we both clearly are infected with borrelia for MANY YEARS. Is it the cause or the only cause. I don't know. I just know Zithromax is somewhat effective for us. Do you think you could state things with a bit more humility? I would be forever grateful - well, at least more grateful for a few years. Perhaps " forever " was not an objective scientific conclusion. a Carnes > > a give up the guestimation diagnosis- deal with what's there. I > believe the zithro may help p-acnes and also be congregating in the > lower back in high enough concentration to take care of anything > else.you have to stop using pathetic information which any9ne can buy > as your husband and your diagnosis. The irony is he may have > spirochetes and not be ill at all from those yet suffering from the > general quagnmire of sympotoms that everyyone in his age group > suffers from.... > > > > > > > Tony, > > Same for my husband. Completely cured his sciatica, also prostate > > inflammation. He has borrelia. He takes 500 mg every other day for > > years now. > > > > a > > > > > > > > > > Penny > > > ther's something about zithro it hit my lower back pain like no > > other > > > drug.Each drug has it's favourtite destination thru the > > > gastrointestinal tract and the bloodstream...But you still need a > > bit > > > of science to watch what's going on with your trillion organisms. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2007 Report Share Posted May 25, 2007 a, the point is, at least Tony treated what he saw in his microscope and now he's 100% well. Better than ever, actually. Why doesn't anybody else at least want to try this? It's the only thing that's working for my friends, who are fortunate to have infectious disease docs who are willing to treat the identifiable bugs with the drugs they're sensitive to. They don't guess at drug treatment without the labs to back it up. Otherwise you've got the situation we find ourselves in, people being treated based on bad science that spouts notions like Rocephin will work for ALL lyme cases. It's just ridiculous. Even if it did work for some, it's not going to work for everyone. It just proves how far people are from understanding that all of us and all of these bugs have our own M.O.s which need to be dealt with on an inidividual basis. penny pjeanneus <pj7@...> wrote: Tony, give up your guestimating - you might be suffering from rickettsia, babesia,borrelia, mycoplasma and c.pulmoni. You think what you see in your basement microscope is what is making you sick. None of us have a clue. All I am stating is that for me and my husband Zithromax clearly works to some extent. Also we both clearly are infected with borrelia for MANY YEARS. Is it the cause or the only cause. I don't know. I just know Zithromax is somewhat effective for us. Do you think you could state things with a bit more humility?I would be forever grateful - well, at least more grateful for a few years. Perhaps "forever" was not an objective scientific conclusion.a Carnes>> a give up the guestimation diagnosis- deal with what's there. I > believe the zithro may help p-acnes and also be congregating in the > lower back in high enough concentration to take care of anything > else.you have to stop using pathetic information which any9ne can buy > as your husband and your diagnosis. The irony is he may have > spirochetes and not be ill at all from those yet suffering from the > general quagnmire of sympotoms that everyyone in his age group > suffers from.... > > > > >> > Tony, > > Same for my husband. Completely cured his sciatica, also prostate > > inflammation. He has borrelia. He takes 500 mg every other day for > > years now.> > > > a> > > > > > >> > > Penny > > > ther's something about zithro it hit my lower back pain like no > > other > > > drug.Each drug has it's favourtite destination thru the > > > gastrointestinal tract and the bloodstream...But you still need a > > bit > > > of science to watch what's going on with your trillion organisms.> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2007 Report Share Posted May 26, 2007 Some group of researchers in wetern australia did a study and found p acnes grew from every prostate sample they had- this surely is more appropriate targeting than assuming borrelia in your husbands case.. > > > > Tony, > > Same for my husband. Completely cured his sciatica, also prostate > > inflammation. He has borrelia. He takes 500 mg every other day for > > years now. > > > > a > > > > > > > > > > Penny > > > ther's something about zithro it hit my lower back pain like no > > other > > > drug.Each drug has it's favourtite destination thru the > > > gastrointestinal tract and the bloodstream...But you still need a > > bit > > > of science to watch what's going on with your trillion organisms. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2007 Report Share Posted May 26, 2007 a I'm not just looking at what's showing in my microscope, strangely enough the therapy choices on many forums GIVE ME 'THE BIG PICTURE'...Your chasing MONGRELS that have a big back pocket to give you idea's of what glamarous bacteria to chase and how to piss fart around with therapy for the rest of your life. Boy I can't wait for the day when you get the correct scan of your head and you find that not only you have an infection- it's MASSIVE and more importantly you realise the only organisms found in that environment are the king of the jungle variety that knock off any competition in there domain due to there strong toxic outputs. The quicker you understand that, the better your outcome IMO, because I believe every day the window of oppurtunity dims more and more as your infection seats itself deeper when your suffering unecessarily..Or you can call it a herx and get on the with the usuall bullshit.' tony > > > > > > Tony, > > > Same for my husband. Completely cured his sciatica, also prostate > > > inflammation. He has borrelia. He takes 500 mg every other day > for > > > years now. > > > > > > a > > > > > > > > > > > > > > Penny > > > > ther's something about zithro it hit my lower back pain like no > > > other > > > > drug.Each drug has it's favourtite destination thru the > > > > gastrointestinal tract and the bloodstream...But you still need > a > > > bit > > > > of science to watch what's going on with your trillion > organisms. > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2007 Report Share Posted May 26, 2007 I think the mis-use, and misunderstanding of the term HERX is what's driven me off most of the boards I used to frequent. I just CHRINGE when I keep hearing people talking about herxing - it's an oxymoron when you think of it... in order to herx you have to have a high pathogen load and kill a bunch (which means your abx is working)which would LOWER the pathogen load - and herxing would cease... so how can the abx be working- (causing the herx) but leaving the pathogen load high enough to just keep on herxing??????????? I think herx probably occurs MORE than DRs admit- but LESS than Lymepatients think... ID docs don't get to see gram-neg infections/immune reactions to abx that kill those bugs- so alot of them never have and never will see a true case of herx in their careers. No one really understands herx- becuase they don't see it - and no ones studying it- Barb > > > > > > Basically I think Fallons study was well done. > > > > I Want to know if at the end of the 6 months if the people were > > tesing positive? Has any body read this whole study??? > > > > Barb > > > > From Euro Lyme: > > > > ... " the antibiotics worked initially on reducing pain, fatigue and > > mental fog, > > but six months later patients were no better than those who did not > > receive > > long-term therapy " ... > > > > http://www6.lexisnexis.com/publisher/EndUser? > > Action=UserDisplayFullDocument & orgI\ > > d=2499 & topicId=100015118 & docId=l:615922493 > > > > ... " Earlier this month, scientists at Columbia University Medical > > School > > announced the opening of the Lyme and Tick-Borne Diseases Research > > Center, > > established with a $3-million gift from two of these organizations, > > Time for > > Lyme and the Lyme Disease Association. > > > > Heading the new institute is Dr. Fallon, a scientist who says > > that he > > wants to address the controversy head-on and develop a test that > will > > identify > > active infection. > > > > Back in the late 1990s, Fallon was awarded $5 million in federal > > grants to > > conduct a long-term antibiotic study and collect brain scans from > > these > > patients. The study, finished two years ago, is under review by a > > major > > scientific journal, Fallon said. Now he's hoping to unravel the > > mysteries of > > chronic Lyme by bringing experts from all walks of science into the > > fray. > > > > More studies needed > > > > " There has been very little done on chronic Lyme disease, " he said > > earlier this > > month at a conference sponsored by Columbia. " Mothers are powerful > > people, " he > > said, pointing to the women who started the organizations after > their > > children > > were diagnosed with chronic Lyme infections. > > > > Fallon, an associate professor of clinical psychiatry at Columbia, > > said that in > > the study the antibiotics worked initially on reducing pain, > fatigue > > and mental > > fog, but six months later patients were no better than those who > did > > not receive > > long-term therapy. > > > > " I would have loved for it to work out, but it didn't, " Fallon > said. > > He said he > > did find evidence of an abnormal circuitry on the brain scans of > some > > of those > > with chronic Lyme disease, and the abnormality did not change with > the > > antibiotic treatment. > > > > " It's uncertain whether it is a low-grade chronic infection or a > post- > > infection > > syndrome, " he said. " But the patient community is sick, and for a > > long time it > > wasn't acknowleged. " > > " ..... > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2007 Report Share Posted May 26, 2007 Tony, that could be, but he does have borrelia - clearly tests positive, as does our son. a > > Some group of researchers in wetern australia did a study and found > p acnes grew from every prostate sample they had- this surely is more > appropriate targeting than assuming borrelia in your husbands case.. > > > > > > > > > > Tony, > > > Same for my husband. Completely cured his sciatica, also prostate > > > inflammation. He has borrelia. He takes 500 mg every other day > for > > > years now. > > > > > > a > > > > > > > > > > > > > > Penny > > > > ther's something about zithro it hit my lower back pain like no > > > other > > > > drug.Each drug has it's favourtite destination thru the > > > > gastrointestinal tract and the bloodstream...But you still need > a > > > bit > > > > of science to watch what's going on with your trillion > organisms. > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2007 Report Share Posted May 26, 2007 > I think herx probably occurs MORE than DRs admit- but LESS than > Lymepatients think... Yeah. It's nature though. Sick people far at sea, trying to get a grip on what they can possibly do besides jump into the void, make much out of little. I know I did, in my time. But, like you say, they should *eventually* notice that it's inconsistent to herx endlessly without getting better. > ID docs don't get to see gram-neg infections/immune reactions to > abx that kill those bugs- so alot of them never have and never will > see a true case of herx in their careers. > No one really understands herx- becuase they don't see it - and no > ones studying it- I don't know how much they see, but they are studying it. In gram-negative sepsis, I'm not sure exactly how they distinguish it from progression. Maybe it's sharp enough (and quick enough after the abx start flowing) that it's obvious. They've tried various immunosuppressants to quell it, because it kills people sometimes. But there has been limited success with that. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2007 Report Share Posted May 27, 2007 Any smart, succesfull, targeted therapy, should never cause these types of problems IMO ..Just based on the fact that it takes harmonious bacterial communication to deliver toxic assault that hurts the patient..without this quorum sensing and a decent pathogen load you just don't have the types of problems called herxing which is what they supposedly discovered at a time when non of this was known. > > > > I think herx probably occurs MORE than DRs admit- but LESS than > > Lymepatients think... > > Yeah. It's nature though. Sick people far at sea, trying to get a grip > on what they can possibly do besides jump into the void, make much out > of little. I know I did, in my time. > > But, like you say, they should *eventually* notice that it's > inconsistent to herx endlessly without getting better. > > > > ID docs don't get to see gram-neg infections/immune reactions to > > abx that kill those bugs- so alot of them never have and never will > > see a true case of herx in their careers. > > No one really understands herx- becuase they don't see it - and no > > ones studying it- > > I don't know how much they see, but they are studying it. > > In gram-negative sepsis, I'm not sure exactly how they distinguish it > from progression. Maybe it's sharp enough (and quick enough after the > abx start flowing) that it's obvious. > > They've tried various immunosuppressants to quell it, because it kills > people sometimes. But there has been limited success with that. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2007 Report Share Posted May 27, 2007 Well, mycobacteria don't express any known toxins, neither do syphilis treponemes and plenty of other bacteria. Herxing is really all over the place, as I documented in my reply to Mark a few months ago - relapsing fever borreliosis, syphilis, leprosy, I've even heard of cases in TB ... gram-neg sepsis, and I think gram-positive sepsis too. You might was well ask what bacterioses it hasn't been reported from. Now, the way I'm defining it, it's not clear what antigens are involved, nor that bacteriolysis is the only thing going on - increased specific reactivity to bacteria remaining intact may also be involved. This, however, is the sensible way to define it, because generally the presence or absence of the reaction tends to be of much greater interest than the exact antigens and mechanisms. Again, I'm certainly not saying the term hasn't been misused on the internet. > Any smart, succesfull, targeted therapy, should never cause these > types of problems IMO ..Just based on the fact that it takes > harmonious bacterial communication to deliver toxic assault that > hurts the patient..without this quorum sensing and a decent pathogen > load you just don't have the types of problems called herxing which > is what they supposedly discovered at a time when non of this was > known. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2007 Report Share Posted May 28, 2007 ' I got sick of hearing this sacred cow stuff in the past when I'm suffering this so called herxheimer reaction...YET as soon as I add another flucloxacillin, for the next couple of hours while my drug levels are high, the herx stops. Basically any type of experimenting can draw some logical conclusions with what may be occuring in that negative moment of ill health.I could alway's regulate the bad feeling by increasing the levels of drug in my system/bloodstream whether it be fluclox, minocycline, or whatever.. Also, as Rich acknwledges, albeit not in the correct sequence-Why would you want to start pumping toxins into your system when your trying like crazy to get them out... > > > Well, mycobacteria don't express any known toxins, neither do syphilis > treponemes and plenty of other bacteria. Herxing is really all over > the place, as I documented in my reply to Mark a few months ago - > relapsing fever borreliosis, syphilis, leprosy, I've even heard of > cases in TB ... gram-neg sepsis, and I think gram-positive sepsis too. > You might was well ask what bacterioses it hasn't been reported from. > > Now, the way I'm defining it, it's not clear what antigens are > involved, nor that bacteriolysis is the only thing going on - > increased specific reactivity to bacteria remaining intact may also be > involved. This, however, is the sensible way to define it, because > generally the presence or absence of the reaction tends to be of much > greater interest than the exact antigens and mechanisms. > > Again, I'm certainly not saying the term hasn't been misused on the > internet. > > > > > Any smart, succesfull, targeted therapy, should never cause these > > types of problems IMO ..Just based on the fact that it takes > > harmonious bacterial communication to deliver toxic assault that > > hurts the patient..without this quorum sensing and a decent pathogen > > load you just don't have the types of problems called herxing which > > is what they supposedly discovered at a time when non of this was > > known. > Quote Link to comment Share on other sites More sharing options...
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