Guest guest Posted October 12, 1999 Report Share Posted October 12, 1999 I did not have a herxheimer reaction. I think because I caught mine very early. I have been on Cipro. I started with doxy and then switched to Cipro. I did see more improvements with Cipro. I have also been on Maxaquin (same family as Cipro) and saw even more improvements. I'm currently on Biaxin and 98% my oldself. I improved after switching to each of these. I did try erthromycin and zithromax - neither of these worked well for me. B. --- leslie@... wrote: > I have been diagnosed over 5 years ago with > psoriatic arthritis, and have > been experiencing all the strange and perplexing > array of its symptoms for > over 10 years. I have tried everything, except > minocin, including bee stings! > I do not have the psoriasis that goes with the > arthritis and look good on paper. > I have had lots of intestinal problems, including > amoebic dysentery, and other > types of bacteria like klebsiella. > I started on the minocin protocol about a month ago. > Immediately my morning stiffness seemed to worsen, > and the joint in my foot that had been swollen since > May got intolerably swollen. Whereas I was getting > relief from acupuncture > treatments right into the affected toe, now the > acupuncture was worsening my > condition. > My question is: Is this all to be expected with a > herxheimer, or maybe I'm > coincidentally getting worse. Has anyone had any > experience with acupuncture > worsening the herxheimer reaction? > Also, I read on the website an interesting story by > Kinghorn. He used > Cipro with better results than tetracycline. Does > anyone have any experience > with this, and when would this be called for? > Glad to be part of this support community. > > <HR> <html> > ===== Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 1999 Report Share Posted October 12, 1999 Hello , Your story is interesting. I have a couple of thoughts, and that is all they are, so take for what they are worth. One is, what are they doing to treat your amoebic dysentery which is a VERY serious infection indeed? Also, what are they treating the other bacteria with????? There's no way acupuncture is going to kill these very bad bacteria. And you may need to find the best doc you can to treat these infections, as they are not common in the US. My Mom developed Amoebic Disentery while living in Lima, Peru. There were not many docs in the US who knew how to treat it. My other comment is that tetracycline is NOT effective at all against mycoplasma. Minocyn is not the same as tetracycline. As to Cipro, yes, it very possibly would be more effective for some of us, as might a newer antibiotic such as Zithromax or sparfloxacin. The trick is to take an antibiotic that can get at infections which live INSIDE cells and to which the bug has not grown resistant. I hope this is helpful. Remember I don't know all you are taking, so I could be offbase here. a C. > From: leslie@... > > I have been diagnosed over 5 years ago with psoriatic arthritis, and have > been experiencing all the strange and perplexing array of its symptoms for > over 10 years. I have tried everything, except minocin, including bee stings! > I do not have the psoriasis that goes with the arthritis and look good on paper. > I have had lots of intestinal problems, including amoebic dysentery, and other > types of bacteria like klebsiella. > I started on the minocin protocol about a month ago. Immediately my morning stiffness seemed to worsen, and the joint in my foot that had been swollen since > May got intolerably swollen. Whereas I was getting relief from acupuncture > treatments right into the affected toe, now the acupuncture was worsening my > condition. > My question is: Is this all to be expected with a herxheimer, or maybe I'm > coincidentally getting worse. Has anyone had any experience with acupuncture > worsening the herxheimer reaction? > Also, I read on the website an interesting story by Kinghorn. He used > Cipro with better results than tetracycline. Does anyone have any experience > with this, and when would this be called for? > Glad to be part of this support community. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 1999 Report Share Posted October 12, 1999 Yet, I thought Dr. Brown originally treated with tetracyclines and had quite a bit of success. Maybe they've lost their effectiveness over time? Mark Re: rheumatic Herxheimer > From: a Carnes <paulajeanne@...> > > Hello , > Your story is interesting. I have a couple of thoughts, and that is all > they are, so take for what they are worth. One is, what are they doing to > treat your amoebic dysentery which is a VERY serious infection indeed? > Also, what are they treating the other bacteria with????? There's no way > acupuncture is going to kill these very bad bacteria. And you may need to > find the best doc you can to treat these infections, as they are not common > in the US. My Mom developed Amoebic Disentery while living in Lima, Peru. > There were not many docs in the US who knew how to treat it. > My other comment is that tetracycline is NOT effective at all against > mycoplasma. Minocyn is not the same as tetracycline. As to Cipro, yes, it > very possibly would be more effective for some of us, as might a newer > antibiotic such as Zithromax or sparfloxacin. The trick is to take an > antibiotic that can get at infections which live INSIDE cells and to which > the bug has not grown resistant. > I hope this is helpful. Remember I don't know all you are taking, so I > could be offbase here. > a C. > > > From: leslie@... > > > > I have been diagnosed over 5 years ago with psoriatic arthritis, and have > > been experiencing all the strange and perplexing array of its symptoms for > > over 10 years. I have tried everything, except minocin, including bee > stings! > > I do not have the psoriasis that goes with the arthritis and look good on > paper. > > I have had lots of intestinal problems, including amoebic dysentery, and > other > > types of bacteria like klebsiella. > > I started on the minocin protocol about a month ago. Immediately my > morning stiffness seemed to worsen, and the joint in my foot that had been > swollen since > > May got intolerably swollen. Whereas I was getting relief from > acupuncture > > treatments right into the affected toe, now the acupuncture was worsening > my > > condition. > > My question is: Is this all to be expected with a herxheimer, or maybe > I'm > > coincidentally getting worse. Has anyone had any experience with > acupuncture > > worsening the herxheimer reaction? > > Also, I read on the website an interesting story by Kinghorn. He > used > > Cipro with better results than tetracycline. Does anyone have any > experience > > with this, and when would this be called for? > > Glad to be part of this support community. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 1999 Report Share Posted October 12, 1999 > > > From: MHOLMES@... (HOLMES, MARK T.) > > > > Yet, I thought Dr. Brown originally treated with tetracyclines and had > quite > > a bit of success. Maybe they've lost their effectiveness over time? PJ replies: > Yes, this is what I have read. When they test tetracycline against > mycoplasma it is no longer effective. MInocyn is from the same family. Also > minocyn crosses the blood/brain barrier better. Many or most of us with FMS > or CFS have brain dysfunction which would suggest the infection is in our > brain. So the minocyn makes sense for us. It is also the antibiotic which > has been used by the mainstream rheumatologists in research. I think this > is why so many of you with RA are being given minocyn while those of us with > FMS or CFS tend to be given a newer drug such as the cipro or zithromax. > Just my guess on this. > a C. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 1999 Report Share Posted October 12, 1999 Hi , I did Accupuncture before being diagnosed with RA. I actually started with symptoms in th wrist he aways put the needle in an I thought accup caused it. As I started to treat with accup I noticed I was getting worse and the needled hurt worse than ever. At one point I cried all during the treatment because it hurt so bad. The doc suggested I might lay off a few days. I think I scared him. After I started to go into remission (1year later)) I went back for aspecific neck pain and didn't feel the needles at all and had success with the treatment. cooky leslie@... wrote: > > From: leslie@... > > I have been diagnosed over 5 years ago with psoriatic arthritis, and have > been experiencing all the strange and perplexing array of its symptoms for > over 10 years. I have tried everything, except minocin, including bee stings! > I do not have the psoriasis that goes with the arthritis and look good on paper. > I have had lots of intestinal problems, including amoebic dysentery, and other > types of bacteria like klebsiella. > I started on the minocin protocol about a month ago. Immediately my morning stiffness seemed to worsen, and the joint in my foot that had been swollen since > May got intolerably swollen. Whereas I was getting relief from acupuncture > treatments right into the affected toe, now the acupuncture was worsening my > condition. > My question is: Is this all to be expected with a herxheimer, or maybe I'm > coincidentally getting worse. Has anyone had any experience with acupuncture > worsening the herxheimer reaction? > Also, I read on the website an interesting story by Kinghorn. He used > Cipro with better results than tetracycline. Does anyone have any experience > with this, and when would this be called for? > Glad to be part of this support community. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 1999 Report Share Posted October 12, 1999 >> I have been diagnosed over 5 years ago with psoriatic arthritis, and have >> been experiencing all the strange and perplexing array of its symptoms for >> over 10 years. I have tried everything, except minocin, including bee >> stings! I do not have the psoriasis that goes with the arthritis and look >> good on paper. I have had lots of intestinal problems, including amoebic >> dysentery, and other types of bacteria like klebsiella : I don't believe you can by definition have psoriatic arthritis if you don't have psoriasis. Reactive arthritis and psoriatic arthritis can be very similar in their musculoskelatal manifestations, but ReA is caused by urinary or intestinal infections SUCH AS THE ONES YOU MENTION! If you still have those active infections, they must be treated. If they don't any longer show up on stool tests, they may still be around but undetectable. I have had ReA 11 years, and have been on mino 5 weeks. I have only had mild flares popping up in different spots, not a major Herx. I am generally feeling better already. I would guess your flares are Herx reactions, and the acupuncture is just provoking even worse Herxing. Dr. Brown used ice to help with increased swelling during the Herx period, the rheumatic.org site has more suggestions, esp. baths with peroxide and Epsom salts. It sounds like the minocin is kicking in, but I am concerned that all the gut bugs you have had may still need to be addressed. If mino alone doesn't do it, you may need to have additional antimicrobials. Jean Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 1999 Report Share Posted October 12, 1999 >My other comment is that tetracycline is NOT effective at all against >mycoplasma. I have to question this statement as tetracycline made some very definite improvements for me in the first year. I have not had the mycoplasma PCR tests, due to financial/insurance problems, but definitely had some in vivo results in my own case in symptoms that had been troubling me for most of my lifetime. Some strains may have developed resistance, and I have not had complete, sustained remission, but I feel personally that it can be effective to some degree. Check out the article I posted on Sunday from a Medline search for some more detailed info on antibiotic sensitivities. What works for one, may not work for all, but I would be cautious of making sweeping generalizations that may discourage others from trying a treatment that may hold benefits from them. I was not able to afford minocin when I first started this treatment, and when later I did have the funds to try it, I was not able to take it because of a sensitivity. If I had believed that the tetracycline held no benefits, I may not have tried it at all, and would still be plagued by 3-hour long morning stiffness, extreme fatigue, severe sleep disturbance, and pain in all the joints of my feet and hands, lower back and neck, and hips. I still have all of these symptoms, but in far fewer joints than before, and the systemic symptoms to a much lesser degree. Simple tetracycline hydrochloride may not have offered me a complete remission, but I am very grateful for the relief it did bring, and am able to work a little part-time form home, which was impossible for me before. It also gave me several months of the best time, quality of life and health-wise, in my life!!-before the benefits seemed to plateau. Keep in mind also that the tetracyclines, specifically doxycycline, have been shown in studies to be helpful in preventing cartilege degradation which is important to those of us with arthritis, as well. I hope I can get the more expensive antibiotics, if I can get my doctor and government insurance to go along with it, to try and wipe out the remaining disease activity. Nonetheless, though, I am VERY grateful to Dr Brown for his work with tetracyclines, and the benefits it has brought to my life, and would urge anyone who cannot get or afford the other antibiotics to give it a try to see if it helps you. Sincerely, Liz G Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 1999 Report Share Posted October 13, 1999 Sounds like its probably a herxheimer. I got really worse too when I started. I think the road back website has info on herx vs. flare. You might check it out. I hope you feel better soon, and congrats on starting. We're rooting for you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 1999 Report Share Posted October 14, 1999 And yet there are many people here with severe RA, psoriatic arthritis etc. using tetracycline because it is cheaper and who are doing very well. Minocycline is generally preferred, however, because it has better cell-penetrating capabilities and stays in the tissues longer - minocycline and doxycycline are also tetracyclines, later versions - all work for this therapy. Chris.. > Yes, this is what I have read. When they test tetracycline against > mycoplasma it is no longer effective. MInocyn is from the same family. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 1999 Report Share Posted October 14, 1999 thanks for this note. I am wondering who on the list is actually using tetracycline? Many have said they are using doxycycline and minocycline. Is anyone taking actual orginal tetracycline? a C. > From: cadlard@... > > > > And yet there are many people here with severe RA, psoriatic arthritis etc. > using tetracycline because it is cheaper and who are doing very well. > Minocycline is generally preferred, however, because it has better > cell-penetrating capabilities and stays in the tissues longer - minocycline and > doxycycline are also tetracyclines, later versions - all work for this therapy. > > Chris.. > > > > > Yes, this is what I have read. When they test tetracycline against > > mycoplasma it is no longer effective. MInocyn is from the same family. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2000 Report Share Posted November 29, 2000 Dear Friends, What have been your experiences with herxes, and how long do they last? What do you do to feel better and to cope? For a little over a week I got off the two-abx combo (erithro and doxy) and stayed on the erithro w. plaquenil, but, after feeling a little better, my symptoms basically didn't change. Two days ago my non LLMD primary care doc said to go back on the doxy, since that's what the LLMD had said to do. I am going back on it at half strength and building up. I feel like a truck hit me; muscle aches; headache; weakness. I am also very, *very* pale all the time (unusual). I've had this since Nov. 9 when I added the doxy to my erithro/plaquenil. My primary care doc decided this was NOT the flu, but a " flare " of my underlying condition. He didn't seem too familiar w. herxes, though. What do you do to get thru it? How long does it last? Also, do you start feeling blue? I can't tell if I feel blue bec. of feeling sick, or if it is part of the herx. Thank you for your response and support. Healing to all. Sincerely, Marie ill since 1994 dxed CFS dxed Lyme Dec. 1999 been on plaquenil and erithro Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2005 Report Share Posted May 21, 2005 I vote that we stick to the official definition of herx, as Barb often cites. Perhaps she could put it in the files section for us. It's a specific reaction that occurs when gram negative bacteria die. It usually occurs within a certain time frame. She posts it all the time, but people disregard it and continue to call every kind of adverse symptom and reaction a " herx " . This word is quickly gaining mass acceptance, even as it's being used incorrectly. Personally, I think it's dangerous to call everything a herx and believe we should find some better, more accurate way to describe various reactions, because if we don't, some people could die thinking they're having a " herx " , rather than getting to the doctor or hospital where they belong. Generalized definitions lead to sloppy analysis of what's really happening to us. It's become very popular, in the mainstream, to call everything a " herx " , but it's not the case in the scientific literature with full time researchers or infectious disease specialists. penny > Herxheimer or not herxheimer ? > Mayby tony has a point here. > > The name is not a very productive name when trying to figure out what happens. > People can die of a herxheimer, and you can't cure a herx. > Or you just get a red mark on the upperpart of the body.... whatever. > > If you do an abx and recognize that you get reaktions and call that a herx, what is that meaning ? > When is a herx a mere reaktion and when is it life treatening ? > > I suggest our discussions here require a more pricise language ! > I don't have any answer what to use, maybe Tony has some ideas. > > -- > Per Sjöholm > Stockholm, Sweden Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2005 Report Share Posted May 21, 2005 Maybe it IS a herx, and, maybe it ISN'T a herx, but what does it really matter? Many here (myself included) started out fighting our disease with cell wall synthesis inhibiting abx, which did absolutely NOTHING. It was not until it was realized that we must take the other kind of abx(protein synthesis inhibiting)did we make any kind of progress at all. And it must be long term. The fact is, if you take a cwi abx and don't feel a thing or any kind of improvement, your not hitting anything. But, if you take psi abx and feel explosions, HELLO, you're hitting something. For instance, I went in to see my doctor after taking mino for two months. I told her about all the excacerbated pain at the infection focal point about an hour or two after each dose. Her response was, " we're hitting SOMETHING " ! Some herxes won't show up until many months later. After taking psi abx for about 7 months, I started having post dosage pain in my right shoulder. It was the same type of pain I had endured for months in my left should and that had gone away- cured on that side. The excact pain pattern is occurring on the other side, but took longer to begin. Only explanation, disease was likely more longstanding on the other side. > Herxheimer or not herxheimer ? > Mayby tony has a point here. > > The name is not a very productive name when trying to figure out what happens. > People can die of a herxheimer, and you can't cure a herx. > Or you just get a red mark on the upperpart of the body.... whatever. > > If you do an abx and recognize that you get reaktions and call that a herx, what is that meaning ? > When is a herx a mere reaktion and when is it life treatening ? > > I suggest our discussions here require a more pricise language ! > I don't have any answer what to use, maybe Tony has some ideas. > > -- > Per Sjöholm > Stockholm, Sweden Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2005 Report Share Posted May 21, 2005 I feel I missed part of the main point, which is when a alleged herx is life threatening. Whether the life threatening symptom is a herx or a reaction to medication, they would both be a result of the medication. How can the difference be found? If the answer was known, what would it matter. The patient should be quickly taken off of the medicine anyway. Another medicine could be resumed, if the same thing occurs, the same actions must be repeated. Resumtion can then be made with either drug at lower doses. Something similiar happened to my wife. We took her to the emergency room for heart pain. She was on doxy. In this case it was determined at the hospital that her severe heart pain was NOT due to the heart being in distress. We were told that she was in great health and they didn't know why she had pain. They scoffed at the doxy/herx theory. I felt like a dumbshit for even suggesting the theory, and got plenty of looks like " who are you, we're the docs? " . When she stopped the doxy the pain stopped. I think I read somewhere that the first major area of herxing can be in the heart. I had heart pain very early in my treatment, and it was over rather quickly, which only makes sense as there is a lot of blood flow there and mic would tend to be high there. > > Herxheimer or not herxheimer ? > > Mayby tony has a point here. > > > > The name is not a very productive name when trying to figure out > what happens. > > People can die of a herxheimer, and you can't cure a herx. > > Or you just get a red mark on the upperpart of the body.... > whatever. > > > > If you do an abx and recognize that you get reaktions and call > that a herx, what is that meaning ? > > When is a herx a mere reaktion and when is it life treatening ? > > > > I suggest our discussions here require a more pricise language ! > > I don't have any answer what to use, maybe Tony has some ideas. > > > > -- > > Per Sjöholm > > Stockholm, Sweden Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2005 Report Share Posted May 21, 2005 It does matter. Because if it's true herx, as accepted by the definition, it means the immune system has all systems GO. The immune system is reacting violently, to the huge immediate influx of toxins gievn off when gram negative bacteria die. It can be life threatening. And it only happens when a gazillion bacteria die and it's a systemic response. I think there just isn't a word or definition for what happens when locally (meaning not a many localtions at once) dieing gram neagtive bacteria given off LPS, and the immune system responds locally. You can have localize die-off, and they body responds to that, and you may feel bad (i.e. head ache, gut ache, joint pain - but the other components are missing.. i.e. high fever indicating the body's reacting systemically. Previous posters are very correct when they say most Drs. do not understand herx- nor will they ever see a case, and probably if they did they would not recognize it. And I think (and I'm interpreting again here) that Tony disregards it, becuase the response doesn't clear the bacteria.. well.. the response isn't to live bacteria- or to clear the live bacteria it's chemicals made by the immune system to dead and dieing bacteria's chemicals and the products they produce as they're dieing en masse. (If a large load of Candia die- we feel crappy- but threat of death insn't in the equation - and that's called die-off response-not herx.) As far as the localized die-off response in Lyme (what ever we decide to call it) I always still pulled back the abx and let it die down... We don't keep driving our cars till they break- letting the oil get sludgy or ignoring squealing break pads. ..... and if we're wrong in our assessment- and it's a drug adverse response- or drug drug adverse reaction, I'd think you'd want to correct that also. I guess the whole point of this discussion is 2 fold- what's herx and what isn't- and do you tough it out when on abx or multiple abx- and grit your teeth and bear it, or do you back off and regroup when the couch starts looking like where you'll end up. I think there's enough people on these lists to realize that there are plenty of people who've been on various abx for months running and have not gotten better. That's why we're here, and that's why we try different protocols. And finally - IMO there is a difference in the way we wage war on these bugs to take back our bodies - on whether the majority of bugs are gram positive, fast replicating, fast mutating, and fast in building resistance, whether they're in the blood or intrcellular and Gram neative bacteria, which replicate much slower, can evade the immune system, can go dormant for long periods of time and also whether they're incracellular... and probably how robust (or not) our immune systems are. Good discussion though, because I think some where some time- someone will name and recognize the response we're talking about - maybe it'll be called peri-herx. Barb > > > Herxheimer or not herxheimer ? > > > Mayby tony has a point here. > > > > > > The name is not a very productive name when trying to figure out > > what happens. > > > People can die of a herxheimer, and you can't cure a herx. > > > Or you just get a red mark on the upperpart of the body.... > > whatever. > > > > > > If you do an abx and recognize that you get reaktions and call > > that a herx, what is that meaning ? > > > When is a herx a mere reaktion and when is it life treatening ? > > > > > > I suggest our discussions here require a more pricise language ! > > > I don't have any answer what to use, maybe Tony has some ideas. > > > > > > -- > > > Per Sjöholm > > > Stockholm, Sweden Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2005 Report Share Posted May 21, 2005 > It does matter. > Because if it's true herx, as accepted by the definition, it means > the immune system has all systems GO. The immune system is reacting > violently, to the huge immediate influx of toxins gievn off when > gram negative bacteria die. It can be life threatening. And it only > happens when a gazillion bacteria die and it's a systemic response. Herx vs an incompetent detoxification system....I also " react " to most antibiotics and so have been trying to figure this one out. I believe I found the following in an FAQ section of Roadback or Rheumatic (), anyway, measurements to differentiate: Herx: increased WBC Increased ESR increased gamma globulin increased total globulin decreased serum albumin decreased hct Flare: decreased WBC increased ESR Allergy: increased eosinophils " The above Herx indicators reflect increased intense reaction pattern to anti-L substances. Dying gram -ve bacteria produce LPS (lipopolysaccharides) which trigger cytokine production causing symptoms. LPS is fat soluble, glutathione detoxes LPS to water- soluble form, allowing excretion by the kidneys. If LPS is not eliminated, it is then recycled causing a continuous cytokine cascade. " robyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2005 Report Share Posted May 21, 2005 A sticking point: By " sticking to the official definition " of reactions when gram neg bacteria are killed, you run into a wee problem. Namely, you omit the J-H reaction WELL DOCUMENTED IN THE LITERATURE with regard to both syphillis and Bb. Spirochetes can't be gram-stained. > > Herxheimer or not herxheimer ? > > Mayby tony has a point here. > > > > The name is not a very productive name when trying to figure out > what happens. > > People can die of a herxheimer, and you can't cure a herx. > > Or you just get a red mark on the upperpart of the body.... > whatever. > > > > If you do an abx and recognize that you get reaktions and call > that a herx, what is that meaning ? > > When is a herx a mere reaktion and when is it life treatening ? > > > > I suggest our discussions here require a more pricise language ! > > I don't have any answer what to use, maybe Tony has some ideas. > > > > -- > > Per Sjöholm > > Stockholm, Sweden Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2005 Report Share Posted May 21, 2005 Barb when you suffer from fibromyalgia and hit the hospital; system violently ill 50 times you like to actually get a very good understanding of what is going on. Also having done 20 plus blood cultures you realise this suffering maybe has nothing to do with gram negatives-you will also find the gram negative bacteria can be harder to kill. You have pseudonomads a gram negative that is resistant to about 90 out of the 100 antibiotic groups.Doing correct therapy covering all your pathogens see's NO SURPRISE REACTIONS. Piddling around with single therapy see's hundreds of reactions that absolutely fit the criteria of herx yet they get stopped when you introduce more drug. I'm sorry I was fortunate to have the antibiotics to experiment with but feeling shocking on mino and adding another to stop the bad feeling needs explanations. 2 hours later the herxing process would start again add another mino and the process would stop. The other irony is that we lost focus on inflammation, we all got a better understanding of suffering out of control inflammation and we have become another same old same old forum focusing on the wives tales stuff and pumping out the literature rehatched many times over. I was graphing my swings in my blood counts and actually working with my doctor on this simple correct science to say this is an infection and this is the infective agent.When you red cells reach low levels this can mean this, this, and this.I have no problem getting anything from my doctor because I practise commonsense.Unfortunately because he kmnows the system sucks he can't scream and yell at his colleagues to treat me against the grain of medicine. tony -- In infections , " Barb Peck " <egroups1bp@y...> wrote: > It does matter. > Because if it's true herx, as accepted by the definition, it means > the immune system has all systems GO. The immune system is reacting > violently, to the huge immediate influx of toxins gievn off when > gram negative bacteria die. It can be life threatening. And it only > happens when a gazillion bacteria die and it's a systemic response. > > I think there just isn't a word or definition for what happens > when locally (meaning not a many localtions at once) dieing gram > neagtive bacteria given off LPS, and the immune system responds > locally. You can have localize die-off, and they body responds to > that, and you may feel bad (i.e. head ache, gut ache, joint pain - > but the other components are missing.. i.e. high fever indicating > the body's reacting systemically. > > Previous posters are very correct when they say most Drs. do not > understand herx- nor will they ever see a case, and probably if they > did they would not recognize it. > > And I think (and I'm interpreting again here) that Tony disregards > it, becuase the response doesn't clear the bacteria.. well.. the > response isn't to live bacteria- or to clear the live bacteria it's > chemicals made by the immune system to dead and dieing bacteria's > chemicals and the products they produce as they're dieing en masse. > (If a large load of Candia die- we feel crappy- but threat of death > insn't in the equation - and that's called die-off response-not > herx.) > > As far as the localized die-off response in Lyme (what ever we > decide to call it) I always still pulled back the abx and let it die > down... We don't keep driving our cars till they break- letting the > oil get sludgy or ignoring squealing break pads. > > .... and if we're wrong in our assessment- and it's a drug adverse > response- or drug drug adverse reaction, I'd think you'd want to > correct that also. > > I guess the whole point of this discussion is 2 fold- what's herx > and what isn't- and do you tough it out when on abx or multiple abx- > and grit your teeth and bear it, or do you back off and regroup when > the couch starts looking like where you'll end up. > > I think there's enough people on these lists to realize that there > are plenty of people who've been on various abx for months running > and have not gotten better. That's why we're here, and that's why we > try different protocols. > > And finally - IMO there is a difference in the way we wage war on > these bugs to take back our bodies - on whether the majority of bugs > are gram positive, fast replicating, fast mutating, and fast in > building resistance, whether they're in the blood or intrcellular and > Gram neative bacteria, which replicate much slower, can evade the > immune system, can go dormant for long periods of time and also > whether they're incracellular... and probably how robust (or not) our > immune systems are. > > Good discussion though, because I think some where some time- > someone will name and recognize the response we're talking about - > maybe it'll be called peri-herx. > > Barb > > > > > > > Herxheimer or not herxheimer ? > > > > Mayby tony has a point here. > > > > > > > > The name is not a very productive name when trying to figure > out > > > what happens. > > > > People can die of a herxheimer, and you can't cure a herx. > > > > Or you just get a red mark on the upperpart of the body.... > > > whatever. > > > > > > > > If you do an abx and recognize that you get reaktions and call > > > that a herx, what is that meaning ? > > > > When is a herx a mere reaktion and when is it life treatening ? > > > > > > > > I suggest our discussions here require a more pricise language ! > > > > I don't have any answer what to use, maybe Tony has some ideas. > > > > > > > > -- > > > > Per Sjöholm > > > > Stockholm, Sweden Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2005 Report Share Posted May 21, 2005 Using the right term is VERY important. And I AM talking about sticking to the J-H definition. Most aren't, that's the problem, and as a result, we see people suffering through all kinds of things that may have nothing to do with a Herx. This became glaringly apparent with a recent protocol where people were being told they were " herxing " , when in fact, they were having severe reactions that have nothing to do with the J-H definition, OR they were having completely unrelated health issues, which may or may not have been triggered by the protocol they were trying desperately to stick with. This idea is promoted heavily that the only way people can gauge improvement is if they " herx " With no idea of what that means, because the term is used incorrectly. People seem to think it means feeling really crappy for a long time, which isn't right. So people who are suffering and sick are still reporting " great effects " of various protocols simply because they feel crappy, when they don't know for certain if they're responding well or actually responding badly. And then other people sign on, because someone feels like crap on a protocol??? What's wrong with this entire scenario? I was on months of i.v. abx. I either felt nothing, or I felt massive improvements (with minor discomfort) or I had very bad reactions to certain drugs, one of which I'm positive was simply a bad drug reaction (identified side effects), not a " herx " . Even if it were in fact a " herx " , the drug felt like it was going to kill me, so I had to stop it. This idea that proliferates across these boards, that you're doing the right thing ONLY if you're " herxing " (i.e. feeling really bad) is very misleading, and could be dangerous to people's health. penny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2005 Report Share Posted May 21, 2005 Dura: If you research what is known about Bb you'll find it's classified as a gram negative bacteria, although yes- it's also does also have the properties of gram positive.. When ever I have talked about Herx in the past (and maybe you weren't on line then) I have have compared out of control herx (and it's subsequent chemistry) to sepsis, and there can be sepsis with either Gneg and Gpos. Spesis is another immune response you can die from. Medicine is an INexact science- and for most terms there is always an exception to the rule. I'm not defending convention medicine (although I'm chuckling a bit here as I say this- it sounds like I am ) but there are groups of symptoms (with CBC diff data) that are 'named' in the literature. The definition of herx is one I happen to think is correct. The definition of 'infection' is another I think is correct. Now.. if we were talking about Lupus/Sarc/alzheimers/ALS I'll probably take the position they are not diseases, but symptoms of infection.. and I'll have a passel of people arguing with me on that. I have read a very good paper that presents data that opsA in late Lyne can cause a localized inflammtion in an already systemically inflammed body... say a joint.. But I don't call that pain a herx. I am perfectly willing to change my mind if someone presents some data the challenges the accepted definition of the JH reaction. Barb An example course the autoimmune diseases are 'names' for symptoms too.. > > > Herxheimer or not herxheimer ? > > > Mayby tony has a point here. > > > > > > The name is not a very productive name when trying to figure out > > what happens. > > > People can die of a herxheimer, and you can't cure a herx. > > > Or you just get a red mark on the upperpart of the body.... > > whatever. > > > > > > If you do an abx and recognize that you get reaktions and call > > that a herx, what is that meaning ? > > > When is a herx a mere reaktion and when is it life treatening ? > > > > > > I suggest our discussions here require a more pricise language ! > > > I don't have any answer what to use, maybe Tony has some ideas. > > > > > > -- > > > Per Sjöholm > > > Stockholm, Sweden Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2005 Report Share Posted May 21, 2005 Robyn just posted the type of information information I'm requesting. Robyn's information bloster's my view. Let's see some information that argues that herx is occurring when they have a low body temp, instead of a fever, and they have suppressed WBCs, and not a count off the charts. Barb > > It does matter. > > Because if it's true herx, as accepted by the definition, it means > > the immune system has all systems GO. The immune system is > reacting > > violently, to the huge immediate influx of toxins gievn off when > > gram negative bacteria die. It can be life threatening. And it > only > > happens when a gazillion bacteria die and it's a systemic response. > > Herx vs an incompetent detoxification system....I also " react " to > most antibiotics and so have been trying to figure this one out. > > I believe I found the following in an FAQ section of Roadback or > Rheumatic (), anyway, measurements to differentiate: > > Herx: > increased WBC > Increased ESR > increased gamma globulin > increased total globulin > decreased serum albumin > decreased hct > > Flare: > decreased WBC > increased ESR > > Allergy: > increased eosinophils > > " The above Herx indicators reflect increased intense reaction pattern > to anti-L substances. Dying gram -ve bacteria produce LPS > (lipopolysaccharides) which trigger cytokine production causing > symptoms. LPS is fat soluble, glutathione detoxes LPS to water- > soluble form, allowing excretion by the kidneys. If LPS is not > eliminated, it is then recycled causing a continuous cytokine > cascade. " > > robyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2005 Report Share Posted May 21, 2005 Spirochetes are neither gram neg nor gram pos which is partly the point I was making as correctly noted. The other aspect that I was raising is that in the " standard " definition of J-H, it is the endotoxin/LPS that *purportedly* plays a key role in the reaction in the first place (in the case of truly gram neg bacteria). Spirochetes don't have that LPS. Anyway, there is a fair amount of controversy in the lit regarding the exact mechanism and cascades involved in a J-H reaction -- part of that may arise from the fact that spirochetes and gram neg bacteria differ in the LPS, and you will be looking at somewhat different mechs in those two cases. That is separate from the distinction between " herx " used by so many folks to describe any crappy feeling they have in response to antibiotics which is simply inaccurate. > > > > Herxheimer or not herxheimer ? > > > > Mayby tony has a point here. > > > > > > > > The name is not a very productive name when trying to figure > out > > > what happens. > > > > People can die of a herxheimer, and you can't cure a herx. > > > > Or you just get a red mark on the upperpart of the body.... > > > whatever. > > > > > > > > If you do an abx and recognize that you get reaktions and call > > > that a herx, what is that meaning ? > > > > When is a herx a mere reaktion and when is it life treatening ? > > > > > > > > I suggest our discussions here require a more pricise language ! > > > > I don't have any answer what to use, maybe Tony has some ideas. > > > > > > > > -- > > > > Per Sjöholm > > > > Stockholm, Sweden Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2005 Report Share Posted May 21, 2005 <spam-barb@c...> wrote in part: > Spirochetes are neither gram neg nor gram pos which is partly the > point I was making as correctly noted. The other aspect that I > was raising is that in the " standard " definition of J-H, it is the > endotoxin/LPS that *purportedly* plays a key role in the reaction in > the first place (in the case of truly gram neg bacteria). > Spirochetes don't have that LPS. Anyway, there is a fair amount of > controversy in the lit regarding the exact mechanism and cascades > involved in a J-H reaction -- part of that may arise from the fact > that spirochetes and gram neg bacteria differ in the LPS, and you > will be looking at somewhat different mechs in those two cases. Yes... to oversimplify and bracket out a bunch of unknowns that I am not familiar with, I beleive LPS is thought to signal largely thru binding to the human protein TLR-4, and spirochetal lipoproteins thru binding TLR-2. " In vivo, however, the absence of TLR2 does not prevent mice from developing acute arthritis after infection with B. burgdorferi " pubmedid=15155621 Anyways, the pathways downstream of there could be similar or broadly overlapping. I dont know of evidence that the downstream immune activation phenomena are significantly different, tho it certainly could be so. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2005 Report Share Posted May 21, 2005 Per The week before you showed your pictures of your blood I was describing how can your immune system work when on the freeway you have a multicar pile up similar to your clumping red cells.The ambulance can't get to the victims. I can't understand why people don't just pay credit to facts like this which occur in many.Instead they come out with 1000 reasons why our immune system isn't working.add this take this away more of this less of that 5 years and everyone puts there finger on a deficiency and it's supposed to cause auto immune. I believe that bacteria make adhesions for themselves to stick to your cells and unfortunately when you have slime on one side of your sinus there's no reason the disease doesn't also go inwards into your bloodstream filling it with similar bacterial byproducts.Hence red cell clumping in the presence of slimy by product. Something to munch on. tony > Herxheimer or not herxheimer ? > Mayby tony has a point here. > > The name is not a very productive name when trying to figure out what happens. > People can die of a herxheimer, and you can't cure a herx. > Or you just get a red mark on the upperpart of the body.... whatever. > > If you do an abx and recognize that you get reaktions and call that a herx, what is that meaning ? > When is a herx a mere reaktion and when is it life treatening ? > > I suggest our discussions here require a more pricise language ! > I don't have any answer what to use, maybe Tony has some ideas. > > -- > Per Sjöholm > Stockholm, Sweden Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2005 Report Share Posted May 21, 2005 Penny wrote: Even if it were in fact a " herx " , the drug felt like it was going to kill me, so I had to stop it. Penny, that is most unfortunate. Not that it felt like it was going to kill you, but that you had to stop. I'm sorry, but I can't help but wonder if you were turning off an excellent opportunity to herx big rather than saving your life from an adverse reaction. Quite possibly the big herx's would be the eventual life savers. I know it's a difficult thing to do, and I may not know excactly how bad you felt, so I won't pretend to know. I do know I read that the worse the herx, the better your chances of getting better, so I guess eventually you may have no other choice than to go ahead with the extreme herx and hope that's what it is. When I took the large doses of flagyl, I felt like I was burning myself up. I would do this until my stomach could not hold it, and throw up. I was popping 3 milk thistle a day and drinking lot's of water and acidophilous too. It's funny, because at the time I was convinced I was fighting with an amoeba that doctors didn't know how to detect. Whatever it was, it probably wasn't much different (as detectability goes). About what I thought were herx's: my face and back would begin to sweat, headache, dizzy, nauseous, severe pain. At my worst point, I would pop a little extra antibiotic and an aspirin as an " in-your- face " gesture to the bugs. I am very stubborn and defiant. All the while calling on God for help. That can only help. The way I saw it, if not here, then after I was dead. > Using the right term is VERY important. > > And I AM talking about sticking to the J-H definition. Most aren't, > that's the problem, and as a result, we see people suffering through > all kinds of things that may have nothing to do with a Herx. > > This became glaringly apparent with a recent protocol where people > were being told they were " herxing " , when in fact, they were having > severe reactions that have nothing to do with the J-H definition, OR > they were having completely unrelated health issues, which may or > may not have been triggered by the protocol they were trying > desperately to stick with. > > This idea is promoted heavily that the only way people can gauge > improvement is if they " herx " With no idea of what that means, > because the term is used incorrectly. People seem to think it means > feeling really crappy for a long time, which isn't right. So people > who are suffering and sick are still reporting " great effects " of > various protocols simply because they feel crappy, when they don't > know for certain if they're responding well or actually responding > badly. And then other people sign on, because someone feels like > crap on a protocol??? What's wrong with this entire scenario? > > I was on months of i.v. abx. I either felt nothing, or I felt > massive improvements (with minor discomfort) or I had very bad > reactions to certain drugs, one of which I'm positive was simply a > bad drug reaction (identified side effects), not a " herx " . Even if > it were in fact a " herx " , the drug felt like it was going to kill > me, so I had to stop it. > > This idea that proliferates across these boards, that you're doing > the right thing ONLY if you're " herxing " (i.e. feeling really bad) > is very misleading, and could be dangerous to people's health. > > penny Quote Link to comment Share on other sites More sharing options...
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