Guest guest Posted August 4, 2005 Report Share Posted August 4, 2005 Hi PB, I agree with your post. We simply do not know what is happening to PWME and CFS who take antibiotics or other meds, feel worse and are told that it is a good thing and they are " herxing " . In the mid-80's I belonged to a support group for PWME and the fashionable theory for a while was Candida. We had a doctor who prescribed Nystatin and we all felt worse on it. None of us had reasonable health improvements, although we took this drug, did the diet etc. We gave Nystatin to a group of relatives, friends and co-workers to see the result. They largely reported feeling terrible and " malaisy " on it. Just like the PWME. I know that this is not a good experiment, flawed and open to all sorts of interpretations. Another example of how much this varies is that I belong to a group that looks at infections and infertility. They are tested for infections. Members are on high dose antibiotics and they DO NOT report herxing or major reactions. I asked the group and was amazed that none of them had the severe reactions that I have. This is a very complicated topic and not helped by the fact we are all different on these groups and what works for one harms another. I've not had a " herx " reaction that has led to an improvement in my health. With warmest regards, Annette ___________________________________________________________ To help you stay safe and secure online, we've developed the all new Security Centre. http://uk.security. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2005 Report Share Posted August 4, 2005 I don't claim to know why doxy makes me better, nor why it caused " herx'ing " as I ramped up. But nobody has a better explanation, and it seems like some of you are just trying to make a point about definitions vs what happened with Syphillis when Herx got its name from Herxeimer. If your point is that sometimes people are just having bad reactions, I agree with you. I have had plenty of bad reactions to things including other antibiotics. To me the reaction I had to doxy where it would last the rest of the day when I took a dose and lessened over time as I got better, that fits the definition of herx which is reaction from die off of bacteria. Some posts are saying it could be sinus bacteria, or whatever. Who cares? I never claimed to know what it is killing. I don't even write off the fact that something else could be going on. I posted several possibilities many times. But other than to warn people that not all reactions are positive and should be " worked through " , I don't get the point. Sure, but sometimes they should be worked through. If I didn't work through I would never have gotten better. Also although I have never had this situation, many people have to build up things like glutahione or detoxing because doing it too fast makes them feel sick. Probably they are overloading their liver's ability to detox, or something like that. It is basically a concept that die-off too fast is too much for your body to handle so you get side effects. You want to call it something else than Herx, fine, come up with a better word. But for most people it is useful and they understand it. And as far as needing to take MORE antibiotics to kill the bacteria, sounds great in theory, but that means a huge attack with the perfect antibiotic, probably by IV which most people can't get even if they can get a lab test to tell them what bacteria they have. Anyway this is a dumb thread and now that I am well I have better things to do! Feel free to continue to argue! Doris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2005 Report Share Posted August 5, 2005 Doris, I am so glad you are well. I don't know if you are the same Doris but I knew a Doris on another message board who was extremely ill a year or so ago. If you are that same person I am really glad for you. I agree with this thread. I don't know if it is a herx or whatever, but I do know I have been severely sick from antibiotics but I persist and I continue to get better. _____ From: [mailto: ] On Behalf Of Doris Brown Sent: Thursday, August 04, 2005 1:50 PM Subject: Re: What a true " Herx " is....... I don't claim to know why doxy makes me better, nor why it caused " herx'ing " as I ramped up. But nobody has a better explanation, and it seems like some of you are just trying to make a point about definitions vs what happened with Syphillis when Herx got its name from Herxeimer. If your point is that sometimes people are just having bad reactions, I agree with you. I have had plenty of bad reactions to things including other antibiotics. To me the reaction I had to doxy where it would last the rest of the day when I took a dose and lessened over time as I got better, that fits the definition of herx which is reaction from die off of bacteria. Some posts are saying it could be sinus bacteria, or whatever. Who cares? I never claimed to know what it is killing. I don't even write off the fact that something else could be going on. I posted several possibilities many times. But other than to warn people that not all reactions are positive and should be " worked through " , I don't get the point. Sure, but sometimes they should be worked through. If I didn't work through I would never have gotten better. Also although I have never had this situation, many people have to build up things like glutahione or detoxing because doing it too fast makes them feel sick. Probably they are overloading their liver's ability to detox, or something like that. It is basically a concept that die-off too fast is too much for your body to handle so you get side effects. You want to call it something else than Herx, fine, come up with a better word. But for most people it is useful and they understand it. And as far as needing to take MORE antibiotics to kill the bacteria, sounds great in theory, but that means a huge attack with the perfect antibiotic, probably by IV which most people can't get even if they can get a lab test to tell them what bacteria they have. Anyway this is a dumb thread and now that I am well I have better things to do! Feel free to continue to argue! Doris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2005 Report Share Posted August 5, 2005 Doris The reason why we are a little rough around the edges about this term is that 'we want the best science to get us well'. Just in case you haven't been around forum's the past few years- people get better on doxy or mino yet they don't get the complete cure and often relapse on the disconyinuation of the drug. The other ugly fact is taht some people never get to a decent level on these drugs. So I personally want to put the whole herxing story to bed because none of it is true. Not even the killing of large numbers of gram negative bacteria fit the description of herx. It's basically a loose canon term that keeps people sick unnecessarily. Yourself having progresed as you have can sit there and say I don't give a rats but it's the poor souls that are dying and violently ill ending up at ER rooms that your not observing that need a better definition of what is happening to them. So it would be smart for yourself even to know that adding a second antibacterial agent may progress you forward and possably to a complete remission, instead of supportung a dead duck call(herx). > Doris, I am so glad you are well. I don't know if you are the same Doris but > I knew a Doris on another message board who was extremely ill a year or so > ago. If you are that same person I am really glad for you. I agree with this > thread. I don't know if it is a herx or whatever, but I do know I have been > severely sick from antibiotics but I persist and I continue to get better. > > > > > > _____ > > From: > [mailto: ] On Behalf Of Doris Brown > Sent: Thursday, August 04, 2005 1:50 PM > > Subject: Re: What a true " Herx " is....... > > > > I don't claim to know why doxy makes me better, nor why it caused " herx'ing " > as I ramped up. But nobody has a better explanation, and it seems like some > of you are just trying to make a point about definitions vs what happened > with Syphillis when Herx got its name from Herxeimer. If your point is that > sometimes people are just having bad reactions, I agree with you. I have > had plenty of bad reactions to things including other antibiotics. To me > the reaction I had to doxy where it would last the rest of the day when I > took a dose and lessened over time as I got better, that fits the definition > of herx which is reaction from die off of bacteria. Some posts are saying > it could be sinus bacteria, or whatever. Who cares? I never claimed to > know what it is killing. I don't even write off the fact that something > else could be going on. I posted several possibilities many times. > > But other than to warn people that not all reactions are positive and should > be " worked through " , I don't get the point. Sure, but sometimes they should > be worked through. If I didn't work through I would never have gotten > better. Also although I have never had this situation, many people have to > build up things like glutahione or detoxing because doing it too fast makes > them feel sick. Probably they are overloading their liver's ability to > detox, or something like that. It is basically a concept that die- off too > fast is too much for your body to handle so you get side effects. You want > to call it something else than Herx, fine, come up with a better word. But > for most people it is useful and they understand it. > > And as far as needing to take MORE antibiotics to kill the bacteria, sounds > great in theory, but that means a huge attack with the perfect antibiotic, > probably by IV which most people can't get even if they can get a lab test > to tell them what bacteria they have. > > Anyway this is a dumb thread and now that I am well I have better things to > do! Feel free to continue to argue! > > Doris > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2005 Report Share Posted August 6, 2005 Trying to find a post to reply to in this thread where it hasn't twisted off into further debate. Just wanted to relate my experience with different drug reactions. I've definitely experienced herxing, mostly with Candida meds. 1st Nystatin course was a strong herx, about a week of flu-like symptoms. After that, herxing if going back on the nystating after slacking off (and realising was having candida symptoms again of depression, weakness, malaise) Or if I added something like Olive Leaf extract, I'd get quite a strong herx. Herx was always a specific pattern - 1st quite bad depression & confusion & strange thoughts; then my head would clear & I'd feel a flu-like achiness and burning in my muscles. But it was a shift in pain from the usual, almost a more superficial pain & I'd feel stronger deeper in the muscles, swelling would go down and I'd be quite happy & clear mentally. These symptoms would pass and I'd feel better than before the meds. That's how I know a candida herx - if I'm worse, but in another way feel better and stronger, and then as herx symptoms go, feel better overall. I've had this with abx too; but from neither antifungals nor abx for a long time. I don't believe the reaction is from underdosing - I've had more intense reactions the more I took. And Nizoral (stronger) equalled too much die-off. It followed the herx pattern, but so much more intensely - I felt suicidal and psychotic, and the muscle pain and inflammation was excruciating and unendurable. I don't believe that even that was underdosing and if I'd stepped it up or had IV it would magically get better with no die-off... I can't imagine how with all those chemicals the little beasts produce. I stupidly tried to stick it out, but only got better once I stopped the med. A bad reaction to a drug (which is almost every drug for me) is very different - I get very weak and have motor skill trouble, oedema that restricts muscle movement, bad depression and confusion, and liver symptoms. Another reaction I've identified that I sometimes wonder if other people maybe mistake for a herx is where something like a herb, vitamin, supplement is quite energising and does its job of making you feel better in some way, but is sort of forcefully stimulating your body, just like exercise would. It's a very similar feeling to me to when you try to do exercise and the flu-like achiness and inflammation comes on. I worry that people mistake that for a herx but otherwise I do believe most here know their reactions well, and can distinguish herx vs drug reaction. > > > > herx has taken on a life of it's own , thanks to the internet. > > > > A herx reaction only lasts 4 days , it can last 8 days in an > > elderly > > > patient > > > > simply because nothing works like it use to at 70. > > > > > > Bob, > > > > > > I suggest you go to Lymenet.org and make that statement and see > > what > > > kind of response you get. You will see that this is simply not > > true > > > in regard to Lyme disease. Numerous Lyme doctors and patients > have > > > stated it can last weeks, even months and I know people who have > > had > > > it happen. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2005 Report Share Posted August 7, 2005 What your trying to describe here smells to me a lot like 'fasciitis' type infection. You have an infection between area's that comes on line when it's irritated by bringing on inflammation and whatever else infections like this do.Your bugs are virtually siting in a no mans zone until you start moving- then they start hurting you is possably another way of looking at it. I'm sure many here have many don't touch me there zones? tony > > > > > herx has taken on a life of it's own , thanks to the internet. > > > > > A herx reaction only lasts 4 days , it can last 8 days in an > > > elderly > > > > patient > > > > > simply because nothing works like it use to at 70. > > > > > > > > Bob, > > > > > > > > I suggest you go to Lymenet.org and make that statement and see > > > what > > > > kind of response you get. You will see that this is simply not > > > true > > > > in regard to Lyme disease. Numerous Lyme doctors and patients > > have > > > > stated it can last weeks, even months and I know people who have > > > had > > > > it happen. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2005 Report Share Posted August 7, 2005 Interesting Tony... I do have very severe myofascial pain, and just looking up fasciitis then I found out it can be like scleroderma but with the fascia instead of the skin. I've always thought my case had a lot of scleroderma parallels, and finding out there's a condition where fascia could be affected rather than skin is quite enlightening - so thank you for mentioning this. Yeah the movement thing sounds about right. I have to stay as still as possible all day, and even things that don't sound strenous like standing in a pool can bring on a bodywide inflammatory attack. I know it's meant to take strain off the muscles, but for me it challenges my weakened postural muscles. I wonder if the hypermobility since childhood predisposes me to these problems, because you're subject to constant low-level injury and inflammation. > > > > > > herx has taken on a life of it's own , thanks to the > internet. > > > > > > A herx reaction only lasts 4 days , it can last 8 days in > an > > > > elderly > > > > > patient > > > > > > simply because nothing works like it use to at 70. > > > > > > > > > > Bob, > > > > > > > > > > I suggest you go to Lymenet.org and make that statement and > see > > > > what > > > > > kind of response you get. You will see that this is simply > not > > > > true > > > > > in regard to Lyme disease. Numerous Lyme doctors and > patients > > > have > > > > > stated it can last weeks, even months and I know people who > have > > > > had > > > > > it happen. Quote Link to comment Share on other sites More sharing options...
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