Guest guest Posted January 5, 2003 Report Share Posted January 5, 2003 Dave wrote: > a point which I consider is most important about getting >abx to treat us. We must get the bacteria identified completely and >abx sensitivities done to see which abx will kill the bacteria. While I agree with the intention, my point is exactly the opposite - there are a HUGE number of bugs that aren't even recognised yet, or that tests are non-existent or unreliable. The chances are that CFS/Lyme patients are infected by one OR MORE bugs -- that they couldn't identify accurately even if they wanted to, let alone do sensitivity tests for. Almost by definition we are infected by a mysterious bug, otherwise it would not have eluded us and our doctors and treatment for all the time we have been sick. (I subscribe to the infection theory for most of us, if not all). Don't believe me? Just look at good old helicobacter pylori - one of the most common and damaging bugs imaginable. Not recognised at all until the 1980's yet having caused HUGE amounts of disease and distress. Still hard to get sensitivity tests for, because it lives in your stomach and you need a gastroscopy to get to it, and the bugs are a bit hard to grow outside. We only know about it at all because of the massive local damage it can do - as peptic ulcers. But it also causes a lot of systemic damage and interferes with the immune system -- if it only did this and not also the local, easily identified ulcers, we would still not know about this particular bactaeria. How many other bugs are there hiding in other harder to reach places that don't cause nice ulcers but devastate the immune system? How would we possibly know about them if they live quietly in the knees or big toe or brain or in one type of our immune cells -- and cause no obvious damage there? Think about the difficulty researchers have had in identifying borrelia (Lyme) or amny other Lyme-like coinfections, or mycoplasmas or various strange viruses --- and the fact that there are still no good tests for any of these, despite the claims. It's a risk either way. If you wait until all your bugs are identifiable, you may be waiting till after your death -- after years of an unpleasant, unsatisfying unhealthy life. If you start treating on supposition, you definitely might breed resistance, or cause sequesterisation (i.e. bugs hiding in more and more difficult to reach places) or transition to another more durable form (like spirochetal cysts) until the abx is gone. You win some, you lose some. We sufferers of " chronic disease of the mysterious types " just lose more than most. We have to be more aggressive in our thinking therefore, perhaps. n Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2003 Report Share Posted January 5, 2003 n, I disagree. You can culture many bugs that aren't currently being cultured (see Shoemaker's latest work re: coagulase negative staph as well as the Australian research on the same subject) and even if you don't identify the specific strain, you can still see if it's toxic and do sensitivities. This is easy if the culture is handled properly (meaning proper agar medium, etc.). Once you know which antibiotics the pathogen are sensitive to, you've got a fighting chance at beating it. This is far preferable to throwing broad spectrum treatments at bugs, allowing them to get stronger, which is the approach currently being used. We need to get this horrible way of thinking reversed, and get back to some good basic pathology. The kind the russians do on every patient before ever prescribing an antibiotic. The people I know who are getting better, actually, the ONLY people, are on long term antibiotics, which are specifically targeting their pathogens, based on known sensitivies which were found in the petri dish. We all need this same basic level of care. Vets do it for birds and cats and dogs, but we, as humans can't get it. Probably because simple cultures and sensitivities don't haul in the big bucks, like expensive ct scans, and colonoscopies, etc. Sigh. Check out Shoemaker's work at the stealth virus group (regarding neurotoxins and coagulase negative staph). Then ask him or some other intelligent doctor to order a nasal swab from Esoterix labs and see what you find. If you start treating staph, any other bugs are probably going to be handled along the way. Staph is one tough bug, but we can beat it, as long as we fight smart. penny > > a point which I consider is most important about getting > >abx to treat us. We must get the bacteria identified completely and > >abx sensitivities done to see which abx will kill the bacteria. > > While I agree with the intention, my point is exactly the opposite - there > are a HUGE number of bugs that aren't even recognised yet, or that tests > are non-existent or unreliable. The chances are that CFS/Lyme patients are > infected by one OR MORE bugs -- that they couldn't identify accurately even > if they wanted to, let alone do sensitivity tests for. Almost by > definition we are infected by a mysterious bug, otherwise it would not have > eluded us and our doctors and treatment for all the time we have been > sick. (I subscribe to the infection theory for most of us, if not all). > > Don't believe me? Just look at good old helicobacter pylori - one of the > most common and damaging bugs imaginable. Not recognised at all until the > 1980's yet having caused HUGE amounts of disease and distress. Still hard > to get sensitivity tests for, because it lives in your stomach and you need > a gastroscopy to get to it, and the bugs are a bit hard to grow > outside. We only know about it at all because of the massive local damage > it can do - as peptic ulcers. But it also causes a lot of systemic damage > and interferes with the immune system -- if it only did this and not also > the local, easily identified ulcers, we would still not know about this > particular bactaeria. How many other bugs are there hiding in other harder > to reach places that don't cause nice ulcers but devastate the immune > system? How would we possibly know about them if they live quietly in the > knees or big toe or brain or in one type of our immune cells -- and cause > no obvious damage there? Think about the difficulty researchers have had > in identifying borrelia (Lyme) or amny other Lyme-like coinfections, or > mycoplasmas or various strange viruses --- and the fact that there are > still no good tests for any of these, despite the claims. > > It's a risk either way. If you wait until all your bugs are identifiable, > you may be waiting till after your death -- after years of an unpleasant, > unsatisfying unhealthy life. If you start treating on supposition, you > definitely might breed resistance, or cause sequesterisation (i.e. bugs > hiding in more and more difficult to reach places) or transition to another > more durable form (like spirochetal cysts) until the abx is gone. > > You win some, you lose some. We sufferers of " chronic disease of the > mysterious types " just lose more than most. We have to be more aggressive > in our thinking therefore, perhaps. > > n Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2003 Report Share Posted January 5, 2003 Another thing people don't understand about antibiotics is this: It's not the bacteria that cause our symptoms, it's the toxins they produce. And the toxins are antibacterial in themselves, meaning one bacteria's toxins will overpower and suppress another bacteria. One reason people feel sick on some antibiotics, is because if you don't know which pathogens you're dealing with, you may weaken one just enough to allow another one to kick up and produce new toxins which are really going to make you feel lousy. They haven't created over 100 different antibiotics because they were bored. They created them to deal with different bacteria, and different strains. We've got at least a 100 chances at beating these things. It makes me really mad that doctors use guesswork, to try to control the most adaptable life forms on the planet. Bacteria. Gotta start getting smart with this stuff, as a very few people are beginning to. I'd suggest everyone look at this seriously. And consider how you hear case after case after case where people like Dave and I have felt better on several weeks of antibiotics. It should at least be looked at seriously, don't you think? has information about bacterial infections at the mycoplasma group, and the stealth virus group. I suggest you check this stuff out, and at least get a sense of the possibilities regarding a bacterial cause of CFS. penny > > > > Hello! I am trying once again to get some more clarity about the > function > > of antibiotics in relation to CFS. More than a year ago I was giving > a > > long-term antibiotics treatment, over a few months, and in that > period I > > improved singificantly. I don't know if it was because of the > antibiotics > > or whether it was a correlation. But I do find it interesting, > because I > > think I have had a CFS relapse because of an infection. > > > > I have read some of Nicolson's comments on antibiotics. Accordining > to my > > father seems to claim that everyone improves with antibiotics > treatment. > > Is this true, and can this really be the case. Nicolson also > suggests that > > one can get really ill in the beginning of the antibiotics > treatment. One > > thing that can happen is for instance headaches, due to reparations > in the > > brain. I have tried antibiotics for about 4 weeks now recently, and > I felt > > worse, then took a break and seemed to be getting better. But I > don't > > really feel well, and wonder if the antibiotics can do harm, or > whether it > > is just the initial reaction that Nicolson talks about. Any > comments? > > > > I know that both Nicolson and Meirleir recommends long-term > antibiotics > > for many patients, but as has been discussed on the list this > treatment is > > not without side-effects, so it would be good to see if anyone had > any > > opinions. > > > > Best wishes, > > s Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2003 Report Share Posted January 5, 2003 Well we need to agree to differ! I agree - again - with the intent, but how many people have successfully isolated and cultured borrelia burgdorferi from a patient? Or how many mycoplasmas are recoverable and culturable? Or chlamydias lurking, for example, in the heart? Or rickettsias in chronic cases? It just aint that easy. You can't even FIND most of the bugs I am alarmed about - the best you ever get are PCR detectable fragments, or antibodies. But they are there, and causing pathology. And what about many of the viruses, especially the intracellular ones? Staph is a doddle compared to " stealthy " bugs. It - even Shoemaker's bug - is located conveniently for swabbing, there's lots of it, it is identifiable and it is growable easily enough if you put your mind to it. But true there are many culturable bugs, so of course it would be better to culture and sensitivity test these before treatment. But there are also those that we can't find and/or don't know how to culture reliably yet. Lots of them, and these are generally the ones we are concerned about, as I said last post, because IF they were findable and cuturable then they are not usually still a mystery and causing undiscovered/unresolvable disease. I also agree that for many better understood and more accessible bugs, doctors are guilty in not culturing as the normal process, but they are also constrained by their own ideas about best practice and cost/benefits. In many cases it is more cost effective to treat " blindly " . Trouble is they extend this mentality into genuinely difficult areas where sensitivity tests would be very useful, without differentiation, IMO. n At 18:08 06/01/03, you wrote: >n, I disagree. You can culture many bugs that aren't currently >being cultured (see Shoemaker's latest work re: coagulase negative >staph as well as the Australian research on the same subject) and >even if you don't identify the specific strain, you can still see if >it's toxic and do sensitivities. This is easy if the culture is >handled properly (meaning proper agar medium, etc.). Once you know >which antibiotics the pathogen are sensitive to, you've got a >fighting chance at beating it. This is far preferable to throwing >broad spectrum treatments at bugs, allowing them to get stronger, >which is the approach currently being used. We need to get this >horrible way of thinking reversed, and get back to some good basic >pathology. The kind the russians do on every patient before ever >prescribing an antibiotic. The people I know who are getting better, >actually, the ONLY people, are on long term antibiotics, which are >specifically targeting their pathogens, based on known sensitivies >which were found in the petri dish. We all need this same basic level >of care. Vets do it for birds and cats and dogs, but we, as humans >can't get it. Probably because simple cultures and sensitivities >don't haul in the big bucks, like expensive ct scans, and >colonoscopies, etc. > >Sigh. > >Check out Shoemaker's work at the stealth virus group (regarding >neurotoxins and coagulase negative staph). Then ask him or some other >intelligent doctor to order a nasal swab from Esoterix labs and see >what you find. If you start treating staph, any other bugs are >probably going to be handled along the way. Staph is one tough bug, >but we can beat it, as long as we fight smart. > >penny > > > > > > a point which I consider is most important about getting > > >abx to treat us. We must get the bacteria identified completely and > > >abx sensitivities done to see which abx will kill the bacteria. > > > > While I agree with the intention, my point is exactly the opposite - > there > > are a HUGE number of bugs that aren't even recognised yet, or that >tests > > are non-existent or unreliable. The chances are that CFS/Lyme >patients are > > infected by one OR MORE bugs -- that they couldn't identify >accurately even > > if they wanted to, let alone do sensitivity tests for. Almost by > > definition we are infected by a mysterious bug, otherwise it would >not have > > eluded us and our doctors and treatment for all the time we have >been > > sick. (I subscribe to the infection theory for most of us, if not >all). > > > > Don't believe me? Just look at good old helicobacter pylori - one >of the > > most common and damaging bugs imaginable. Not recognised at all >until the > > 1980's yet having caused HUGE amounts of disease and distress. >Still hard > > to get sensitivity tests for, because it lives in your stomach and >you need > > a gastroscopy to get to it, and the bugs are a bit hard to grow > > outside. We only know about it at all because of the massive local >damage > > it can do - as peptic ulcers. But it also causes a lot of systemic >damage > > and interferes with the immune system -- if it only did this and >not also > > the local, easily identified ulcers, we would still not know about >this > > particular bactaeria. How many other bugs are there hiding in >other harder > > to reach places that don't cause nice ulcers but devastate the >immune > > system? How would we possibly know about them if they live quietly >in the > > knees or big toe or brain or in one type of our immune cells -- and >cause > > no obvious damage there? Think about the difficulty researchers >have had > > in identifying borrelia (Lyme) or amny other Lyme-like >coinfections, or > > mycoplasmas or various strange viruses --- and the fact that there >are > > still no good tests for any of these, despite the claims. > > > > It's a risk either way. If you wait until all your bugs are >identifiable, > > you may be waiting till after your death -- after years of an >unpleasant, > > unsatisfying unhealthy life. If you start treating on >supposition, you > > definitely might breed resistance, or cause sequesterisation (i.e. >bugs > > hiding in more and more difficult to reach places) or transition to >another > > more durable form (like spirochetal cysts) until the abx is gone. > > > > You win some, you lose some. We sufferers of " chronic disease of >the > > mysterious types " just lose more than most. We have to be more >aggressive > > in our thinking therefore, perhaps. > > > > n > > >This list is intended for patients to share personal experiences with each >other, not to give medical advice. If you are interested in any treatment >discussed here, please consult your doctor. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2003 Report Share Posted January 6, 2003 Hi n I think that the points that have been reaised by yourself and Penny are valid in their own scenarios. If you want to treat by using broad spectrum abx to kill unknown bugs as well, then your scenario is the valid one. If you suspect a specific group of bugs, as Penny does, then a more concise way of diagnosis and treatment is the way to go. I myself have gone thru the process of trying to eliminate other problems from the overall picture of my health. I have tested negative for mycoplasma DNA, BB DNA, HCV DNA, EBV DNA, CMV DNA, HHV6 DNA. I had a remission from an abx which is sensitive to staph infections. I have shown something anomalous floating around in my blood. Low-doses of cholestryamine has helped, but not high dose. Gram stain has come back negative, but standard 7-day culturing as per Tarello has come back positive (still waiting for final analysis on this). Hence I am looking towards a possible l-form staph infection. L-forms by their definition will be slow growing because of their lack of an outer cell wall to draw in nutrition. As you correctly point out the discovery of h-pylori by long culturing shows a positive result; the same analogy can be drawn between gram stains which are grown in a growth medium for 2 days then cultured for 3 days which came out negative for me, as opposed to culturing directly for 7 days which was positive. Thanks for your input on the whole idea of abx and cfs. Dave > > a point which I consider is most important about getting > >abx to treat us. We must get the bacteria identified completely and > >abx sensitivities done to see which abx will kill the bacteria. > > While I agree with the intention, my point is exactly the opposite - there > are a HUGE number of bugs that aren't even recognised yet, or that tests > are non-existent or unreliable. The chances are that CFS/Lyme patients are > infected by one OR MORE bugs -- that they couldn't identify accurately even > if they wanted to, let alone do sensitivity tests for. Almost by > definition we are infected by a mysterious bug, otherwise it would not have > eluded us and our doctors and treatment for all the time we have been > sick. (I subscribe to the infection theory for most of us, if not all). > > Don't believe me? Just look at good old helicobacter pylori - one of the > most common and damaging bugs imaginable. Not recognised at all until the > 1980's yet having caused HUGE amounts of disease and distress. Still hard > to get sensitivity tests for, because it lives in your stomach and you need > a gastroscopy to get to it, and the bugs are a bit hard to grow > outside. We only know about it at all because of the massive local damage > it can do - as peptic ulcers. But it also causes a lot of systemic damage > and interferes with the immune system -- if it only did this and not also > the local, easily identified ulcers, we would still not know about this > particular bactaeria. How many other bugs are there hiding in other harder > to reach places that don't cause nice ulcers but devastate the immune > system? How would we possibly know about them if they live quietly in the > knees or big toe or brain or in one type of our immune cells -- and cause > no obvious damage there? Think about the difficulty researchers have had > in identifying borrelia (Lyme) or amny other Lyme-like coinfections, or > mycoplasmas or various strange viruses --- and the fact that there are > still no good tests for any of these, despite the claims. > > It's a risk either way. If you wait until all your bugs are identifiable, > you may be waiting till after your death -- after years of an unpleasant, > unsatisfying unhealthy life. If you start treating on supposition, you > definitely might breed resistance, or cause sequesterisation (i.e. bugs > hiding in more and more difficult to reach places) or transition to another > more durable form (like spirochetal cysts) until the abx is gone. > > You win some, you lose some. We sufferers of " chronic disease of the > mysterious types " just lose more than most. We have to be more aggressive > in our thinking therefore, perhaps. > > n Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2003 Report Share Posted January 6, 2003 Dave wrote: I have tested negative > for mycoplasma DNA, BB DNA, HCV DNA, EBV DNA, CMV DNA, HHV6 DNA. I had > a remission from an abx which is sensitive to staph infections. Dave, the PCRs being used these days for mycoplasmas are probably not too accurate. The two west coast labs seem to be using a test where one blood sample is used to add primers for more than one mycoplasma. (I don't know what the New Jersey lab is doing.) It is not clear whether this is as accurate as one blood sample plus ONE primer for ONE mycoplasma strain at a time. As to the tick borne pathogens, where were you tested? My best guess is that Igenex is the best lab. a Carnes Quote Link to comment Share on other sites More sharing options...
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