Guest guest Posted April 2, 2000 Report Share Posted April 2, 2000 I have had the Jaresch-Herxheimer reaction while in Touro Infimary under the intense IV Dozy therapy with DR. Hyman on 2 occasions. Once when the Doxy was increased and again when he added a piggyback of Vancomycin for 3 days. The dosage was not stopped, but reduced for 24 hr. and brought back up with no herx. Lydia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2000 Report Share Posted April 2, 2000 What I had was just almost lifeless existence, I had-zero energy, very low BP(70/40) low grade fever, diarrhea...etc..... I am sure there is more but in a 'brain fog' today. I am just not sure I understand what the Herx is now. I thought it was just a reaction to the antibiotics at the time? Lydia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2000 Report Share Posted April 2, 2000 I was feeling 'great' improvement before the onset of what Hyman called herx. and have experienced nothing like the episodes since. Just trying to find out for sure what herx is before I go thru it again (treatment) Thanks Steve Lydia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2000 Report Share Posted April 2, 2000 Yes, Steve, I notices an improvement within the first week. And had the herx reaction the second week and then 5 days later when the second antibiotic 'piggybacked.' But he did not stop them, just decreased the flow for 24 hrs and when it was brought back up I had no problem. I was free to roam the hosp with my rolling pole and even did laundry on another floor. (I am 350 miles from there.) But it was all worth the effect I got. Much improved for a year or so, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2000 Report Share Posted April 2, 2000 Well it is not direct experince,but since our MD does prescribe doxy for acne and has 20+ years of family practise.... and we had to explain the herxheimer effect to her (and to the pharmacy folks too)... Since doxy is one of the 20 most prescribed drugs in the US.... the herxheimer effect is not expected/known except in specific circles... Ken Lassesen 2 @ 2 ft PWC, 2 @ 4ft PWC2 ft PWC: http://www.folkarts.com/idef/4 ft PWC: http://corgi.folkarts.com/Fax: (520) 832-6836 ICQ #: 2122097 (Netmeeting too) ABX and "Healthies" > When I> was 17 I was on Minocin then Minocin MR (modified> release) for acne for 3 - 6 months (I can't recall> exactly). (and others)I am curious to hear from people who took say tetracyclines (doxy, minoetc.) either PRIOR to having CFIDS or from people who don't have CFIDS atall and who also took/are taking the same type of abx (you might havefriends or rels who have taken them, like , for acne for eg. I reallywould like to know what their reactions were, since Jacques (my husband) andmyself (both affected by pbly Lyme and Rickettsia) can't stand to be on themfor more than one or two weeks maximum, since we get such a foul reaction(Herx?!). I really would be interested to hear how "healthies" react to these abx, toconfirm that we are indeed experiencing some kind of internal major battlebtwn Good and Evil, whatever the exact mechanism.Thanks Nelly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2000 Report Share Posted April 2, 2000 Hi Nelly, I know 2 men who have been on Doxy or Tetracycline long term for Rosesea, a skin condition. They have had no bad effects. Just before I became chronically ill, with FMS, I was being treated with Tetracycline for bronchitis, which I developed after have 3 really bad viruses in about 4 months. I was on the Tetracycline for only a few days when I began feeling lousy, so I stopped it thinking I was having a bad reaction. Herx? Guess I should have stuck it out. Now I have been sick for 14 years! Dixie Nelly Pointis wrote: > > > When I > > was 17 I was on Minocin then Minocin MR (modified > > release) for acne for 3 - 6 months (I can't recall > > exactly). > > (and others) > > I am curious to hear from people who took say tetracyclines (doxy, mino > etc.) either PRIOR to having CFIDS or from people who don't have CFIDS at > all and who also took/are taking the same type of abx (you might have > friends or rels who have taken them, like , for acne for eg. I really > would like to know what their reactions were, since Jacques (my husband) and > myself (both affected by pbly Lyme and Rickettsia) can't stand to be on them > for more than one or two weeks maximum, since we get such a foul reaction > (Herx?!). > I really would be interested to hear how " healthies " react to these abx, to > confirm that we are indeed experiencing some kind of internal major battle > btwn Good and Evil, whatever the exact mechanism. > > Thanks > > Nelly > > --------------------------------------------------------------------------------\ ----------------- > > --------------------------------------------------------------------------------\ ----------------- > 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 April 2, 2000 Report Share Posted April 2, 2000 Not yet Steve, as he has been out of town for a week I do not know if insurance has sent the certification yet. I am sure I am going back. Thanks for helping me here. I hope to borrow a laptop when I go for the 3 weeks! Then I can still be here. Lydia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2000 Report Share Posted April 2, 2000 Lydia could you describe what th Herx was like. thanks Steve lilbits65@... wrote: > I have had the Jaresch-Herxheimer reaction while in Touro Infimary under the > intense IV Dozy therapy with DR. Hyman on 2 occasions. Once when the Doxy > was increased and again when he added a piggyback of Vancomycin for 3 days. > The dosage was not stopped, but reduced for 24 hr. and brought back up with > no herx. > Lydia > > ------------------------------------------------------------------------ > DON'T HATE YOUR RATE! > Get a NextCard Visa, in 30 seconds! Get rates as low as > 0.0% Intro or 9.9% Fixed APR and no hidden fees. > Apply NOW! > 1/2120/2/_/531724/_/954699237/ > ------------------------------------------------------------------------ > > 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 April 2, 2000 Report Share Posted April 2, 2000 I am pretty foggy today myself. It sounds like you were feeling so bad when the put you on abxs that the subjective awareness of any reaction you might have been having was muted by your overall condition. I was just curious if there might have been some very specific indicators of a herx reaction. I am not sure that we are using the concept correctly on this site. Not that we need to be precise in our language but I am still trying to figure out what a herx is. But when you are feeling as bad as you describe I imagine that any differences you might have perceived were minimal. Thanks Lydia Steve Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2000 Report Share Posted April 2, 2000 That is interesting did you feel much better within days of starting the abx treatment. I like the idea of the IV approach because it seems like you would know right away if it was going to help or not. Was it that way with you? It sounds like the herx is something that you just have to deal with - did Dr. Hyman indicate that there is anything that can be done to prevent it? It seems like if oral abxs give you a little herx then IV abxs are going to give you a big herx. My logic may be naive but it sounds like it was worth going through to get (as they say in the big easy) " more better " . thanks Steve lilbits65@... wrote: > I was feeling 'great' improvement before the onset of what Hyman called herx. > and have experienced nothing like the episodes since. > Just trying to find out for sure what herx is before I go thru it again > (treatment) > Thanks Steve > > Lydia > > ------------------------------------------------------------------------ > LOW RATE, NO WAIT! > Get a NextCard Visa, in 30 seconds! Get rates > as low as 2.9% Intro or 9.9% Fixed APR and no hidden fees. > Learn more at: > 1/937/2/_/531724/_/954701687/ > ------------------------------------------------------------------------ > > 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 April 2, 2000 Report Share Posted April 2, 2000 This doesn't really have to do with your question, but my experience with antibiotics early in my CFS was horrible. I was diagnosed with a borderline-positive lyme test, and was thus given high doses of amoxicillin over a 6 week period. My CFS had started about 8 months before, but I was at least able to work part time, and live somewhat of a normal life. At that time my biggest symptoms were fatigue, insomnia, and panic attacks. Once I began the amoxicillin, I went from 'sick and functional' to 'sick and bedridden.' Unfortunately, I'm still there 5 years later. My main symptoms now are severe fatigue, burning skin, muscle aches, etc. But I no longer have the insomnia and panic attacks... Figure that one out. The topper is that I don't believe I ever had lyme. Dan Baker __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2000 Report Share Posted April 2, 2000 Could this be done on a home health basis? My dad is a registered nurse so I could spend a week with my folks & have 24 hr nursing supervision. I guess I'll need to ask Dr. Hyman that question when I talk to him this week. Boy Lydia we have got a regular chat room going this afternoon. I wish I was feeling a little better -- I'd be out fishing. Do you have a date yet regarding you next treatment? thanks Steve lilbits65@... wrote: > Yes, Steve, > I notices an improvement within the first week. And had the herx reaction > the second week and then 5 days later when the second antibiotic > 'piggybacked.' But he did not stop them, just decreased the flow for 24 hrs > and when it was brought back up I had no problem. I was free to roam the > hosp with my rolling pole and even did laundry on another floor. (I am 350 > miles from there.) But it was all worth the effect I got. Much improved for > a year or so, > > ------------------------------------------------------------------------ > GET A NEXTCARD VISA, in 30 seconds! Get rates as low as 2.9% > Intro or 9.9% Fixed APR and no hidden fees. Apply NOW! > 1/936/2/_/531724/_/954703133/ > ------------------------------------------------------------------------ > > 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 April 3, 2000 Report Share Posted April 3, 2000 Jimmy wrote: ================== This doesn't really have to do with your question, but my experience with antibiotics early in my CFS was horrible. Annette's reply : ================= I was prescribed Amoxicillin frequently in the first 2 years of my illness and the results were horrendous. Emotionally they really screwed me up. I cried at anything and felt emotionally devastated whilst taking them. Also the fungal infections and many other problems didn't start until well into that first year of Amoxil. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2000 Report Share Posted April 3, 2000 From: annette barclay [mailto:annettebarclay@...] Annette's reply : ================= I was prescribed Amoxicillin frequently in the first 2 years of my illness and the results were horrendous. [Patti:] This is more " fuel to the fire " of Nicholson's statement that members of the penicillin family actually cause micoplam and other cell wall deficient bacteria to MULTIPLY. Its members of the tetracycline family that are purported to help. I took an antifungal, Diflucan, that totally screwed up my life. I had recovered from CFS about 80% and was getting ready to return to full time work. I took diflucan because I thought that getting rid of the pesky yeast problem would take me up to 100%. The antifungal causes a dizzying downwards spiral in my health. I kept taking it for two weaks because I thought it was just a herx reaction. I stopped taking it, but I continued to spiral downward, and within 1 month I was completely bedridden. After discontinuing diflucan I managed to recover a bit, but it appears that some permanent damage was done and now I can only leave the house a few days a week. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2000 Report Share Posted April 3, 2000 If you are taking DIFLUCAN you are supposed to have your liver checked weekly. RE: ABX and " Healthies " > > >From: annette barclay [mailto:annettebarclay@...] > >Annette's reply : >================= >I was prescribed Amoxicillin frequently in the first 2 >years of my illness and the results were horrendous. > >[Patti:] This is more " fuel to the fire " of Nicholson's statement that >members of the penicillin family actually cause micoplam and other cell wall >deficient bacteria to MULTIPLY. Its members of the tetracycline family that >are purported to help. > >I took an antifungal, Diflucan, that totally screwed up my life. I had >recovered from CFS about 80% and was getting ready to return to full time >work. I took diflucan because I thought that getting rid of the pesky yeast >problem would take me up to 100%. The antifungal causes a dizzying >downwards spiral in my health. I kept taking it for two weaks because I >thought it was just a herx reaction. I stopped taking it, but I continued >to spiral downward, and within 1 month I was completely bedridden. After >discontinuing diflucan I managed to recover a bit, but it appears that some >permanent damage was done and now I can only leave the house a few days a >week. > > > > >------------------------------------------------------------------------ >Get a NextCard Visa, in 30 seconds! >1. Fill in the brief application >2. Receive approval decision within 30 seconds >3. Get rates as low as 2.9% Intro or 9.9% Fixed APR >Apply NOW! >1/2646/2/_/531724/_/954795483/ >------------------------------------------------------------------------ > >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 April 3, 2000 Report Share Posted April 3, 2000 Hi- Im no expert, but I think Ihave read that penicillin drugs are contraindicated for Ricksettia, and perhaps this is true for other intracellular bacterias as well (just guessing). I do know htat since Ive been ill Ive known that penicillin has a peculiar effect I cant put my finger on-I just dont want to take it-and always specifiy when asked about antibiotic allergies that I may not be allergic in the classic sense but dont react well and dont want to take it unless there is a very good reason for doing so. Anybody else remember reading anything about this? Could try looking up the Jadin protocol at Ken's webside. Regards, Jimmy wrote: ================== This doesn't really have to do with your question, but my experience with antibiotics early in my CFS was horrible. Annette's reply : ================= I was prescribed Amoxicillin frequently in the first 2 years of my illness and the results were horrendous. Emotionally they really screwed me up. I cried at anything and felt emotionally devastated whilst taking them. Also the fungal infections and many other problems didn't start until well into that first year of Amoxil. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2000 Report Share Posted April 3, 2000 See http://www.folkarts.com/idef/pencillin.htm Do you have a URL or source for "Ihave read that penicillin drugs are contraindicated for Ricksettia", I would love to add this to the page. P.S. Everyone in the family is now "allergic" to pencillin. Laurie and I have decided that being "allergic" to pencillin is probably best for us and for the kids. It also saves explaining why you don't want it... Ken Lassesen 2 @ 2 ft PWC, 2 @ 4ft PWC2 ft PWC: http://www.folkarts.com/idef/4 ft PWC: http://corgi.folkarts.com/Fax: (520) 832-6836 ICQ #: 2122097 (Netmeeting too) Re: ABX and "Healthies" Hi- Im no expert, but I think Ihave read that penicillin drugs arecontraindicated for Ricksettia, and perhaps this is true for otherintracellular bacterias as well (just guessing). I do know htat since Ivebeen ill Ive known that penicillin has a peculiar effect I cant put myfinger on-I just dont want to take it-and always specifiy when asked aboutantibiotic allergies that I may not be allergic in the classic sense butdont react well and dont want to take it unless there is a very good reasonfor doing so.Anybody else remember reading anything about this? Could try looking up theJadin protocol at Ken's webside.Regards, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2000 Report Share Posted April 4, 2000 Ken-I thought I read this in the Jadin protocol (her down writing), either by way of your site or last year from the Australian conference. As soon as I have some clear-heaaded brain time, Ill try to track it down but dont dtrust my memory cfompletely-however, it stuck in my mind for obvious reasons. Best Regards, karen Do you have a URL or source for " Ihave read that penicillin drugs are contraindicated for Ricksettia " , I would love to add this to the page. P.S. Everyone in the family is now " allergic " to pencillin. Laurie and I have decided that being " allergic " to pencillin is probably best for us and for the kids. It also saves explaining why you don't want it... Ken Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2000 Report Share Posted April 5, 2000 Hi, I have bicillin for lyme. Chrisite At 11:07 PM 4/3/00 -0400, you wrote: >Hi- Im no expert, but I think Ihave read that penicillin drugs are >contraindicated for Ricksettia, and perhaps this is true for other >intracellular bacterias as well (just guessing). I do know htat since Ive >been ill Ive known that penicillin has a peculiar effect I cant put my >finger on-I just dont want to take it-and always specifiy when asked about >antibiotic allergies that I may not be allergic in the classic sense but >dont react well and dont want to take it unless there is a very good reason >for doing so. >Anybody else remember reading anything about this? Could try looking up the >Jadin protocol at Ken's webside. > >Regards, > > > >Jimmy wrote: >================== >This doesn't really have to do with your question, >but my experience with antibiotics early in my CFS was >horrible. >Annette's reply : >================= >I was prescribed Amoxicillin frequently in the first 2 >years of my illness and the results were horrendous. >Emotionally they really screwed me up. I cried at >anything and felt emotionally devastated whilst taking >them. >Also the fungal infections and many other problems >didn't start until well into that first year of >Amoxil. > > > > > >------------------------------------------------------------------------ >Get a NextCard Visa, in 30 seconds! >1. Fill in the brief application >2. Receive approval decision within 30 seconds >3. Get rates as low as 2.9% Intro or 9.9% Fixed APR >Apply NOW! >1/2646/2/_/531724/_/954819952/ >------------------------------------------------------------------------ > >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 April 9, 2000 Report Share Posted April 9, 2000 Did you have a LUAT test for lyme and did you see a doctor experienced in treating lyme? Chrisite > > >This doesn't really have to do with your question, but >my experience with antibiotics early in my CFS was >horrible. I was diagnosed with a borderline-positive >lyme test, and was thus given high doses of >amoxicillin over a 6 week period. My CFS had started >about 8 months before, but I was at least able to work >part time, and live somewhat of a normal life. At >that time my biggest symptoms were fatigue, insomnia, >and panic attacks. Once I began the amoxicillin, I >went from 'sick and functional' to 'sick and >bedridden.' Unfortunately, I'm still there 5 years >later. My main symptoms now are severe fatigue, >burning skin, muscle aches, etc. But I no longer have >the insomnia and panic attacks... Figure that one >out. The topper is that I don't believe I ever had >lyme. > >Dan Baker > >__________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2000 Report Share Posted April 10, 2000 Dan-I had as very similiar experience. I became sick when I was 19 years old-noone could figure out what was wrong with me (this was in 1989) . I had the misfortune of haveing a borderline-positive Lyme disease test come back also. The inexperienced doctor treated me for 3 months of IV antibiotics-which made me worse-he told me I was herxheiming! Ha! HA! since I wasn't doing any better he referreed me to a " lyme disease specialist " who I ended up doctoring with for two years. Looking back at my medical reports I had a total of 8 months of IV antiniotics and almost two years of oral antibiotics. My story is much more detailed and distressing than this but the crux of it is I DID NOT HAVE LYME DISEASE! The " Lyme disease specialist " was eventually investigated by the attorney generals office and had his liscence revoked for six months-I testified along with 30 other people! This is why I worry sometimes when I see all of these people thinking that antibiotics are going to cure them-they sure didn't help me!! I have no idea what the antibiotics have done to me on a long term basis-I don't know if I would have been better now if I didn't have them-I think that if I would have had the proper diagnosis and treatment earlier I would be doing better! I did end up getting diagnosed in 1994 with cfids after five years of agonizing-not knowing what was wrong with me-I just can't belleive how incompetent some doctors are! Well-have to cut this short! ~ ! - Original Message ----- From: " C.Tab. " <tab@...> <onelist> Sent: Sunday, April 09, 2000 7:12 PM Subject: Re: ABX and " Healthies " > > Did you have a LUAT test for lyme and did you see a doctor experienced in > treating lyme? Chrisite > > > > > >This doesn't really have to do with your question, but > >my experience with antibiotics early in my CFS was > >horrible. I was diagnosed with a borderline-positive > >lyme test, and was thus given high doses of > >amoxicillin over a 6 week period. My CFS had started > >about 8 months before, but I was at least able to work > >part time, and live somewhat of a normal life. At > >that time my biggest symptoms were fatigue, insomnia, > >and panic attacks. Once I began the amoxicillin, I > >went from 'sick and functional' to 'sick and > >bedridden.' Unfortunately, I'm still there 5 years > >later. My main symptoms now are severe fatigue, > >burning skin, muscle aches, etc. But I no longer have > >the insomnia and panic attacks... Figure that one > >out. The topper is that I don't believe I ever had > >lyme. > > > >Dan Baker > > > >__________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2000 Report Share Posted April 10, 2000 Wow that is a real eye opener! Steve Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2000 Report Share Posted April 10, 2000 Hi, I do have lyme disease and was dx'ed with variety of tests and clinical picture. What tests did you have done? I'm sorry you had a bad experience! My LLMD does not treat everyone who consults with him, however. He is honest, thank goodness! Christie >Dan-I had as very similiar experience. I became sick when I was 19 years >old-noone could figure out what was wrong with me (this was in 1989) . I >had the misfortune of haveing a borderline-positive Lyme disease test come >back also. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2000 Report Share Posted April 11, 2000 I had a ELISA antibody that was borderline positive-a urine that was negative-and a Western Blot that came back positive on three bands-he interpreted it as a positve-but when I got a hold of the test and lab remarks that went with the test it even states that positive band can be a result from a AUTO-IMMUNE disease or cross reactive with other spirochetes-including the one that causes gingivitus and syphyllus-so just BE CAREFUL!!!!!! especially if you did not have a tick bite that you can remember or the specific bull-eye rash that goes along wiht it! I have heard of ALOT of people who have been misdiagnosed with Lyme disease when they had chronic fatigue syndrome. I was so excited to hear that I had Lymne disease because I thought great I will take some antibiotics and it will cure me but they didn't and I had two full years of them! THere is the whole controvery about having LATE LYME after repeated courses of antibiotics becareful of this!!!!!!!! -- Original Message ----- From: " C.Tab. " <tab@...> <egroups> Sent: Monday, April 10, 2000 11:14 PM Subject: Re: ABX and " Healthies " > > Hi, > > I do have lyme disease and was dx'ed with variety of tests and clinical > picture. What tests did you have done? I'm sorry you had a bad experience! > My LLMD does not treat everyone who consults with him, however. He is > honest, thank goodness! Christie > > > >Dan-I had as very similiar experience. I became sick when I was 19 years > >old-noone could figure out what was wrong with me (this was in 1989) . I > >had the misfortune of haveing a borderline-positive Lyme disease test come > >back also. > > > ------------------------------------------------------------------------ > Avoid the lines and visit avis.com for quick and easy online > reservations. Enjoy a compact car nationwide for only $29 a day! > Click here for more details. > 1/3011/2/_/531724/_/955422970/ > ------------------------------------------------------------------------ > > 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...
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