Guest guest Posted February 16, 2000 Report Share Posted February 16, 2000 WHERE IS CAROL WILKE? na, Welcome to this family. And that is probably what it will become for you. Carol is somewhere in England - I don't know where exactly, but if she is on the computer today and reads your message, you can be assured you will hear from her. If she is away, then go ahead and e-mail her. Her net address is carol@... If I remember correctly, she is RA. Also, if you request, there is a list of doctors around this world who practice AP on this site. I am sure that really comes in handy for some. You will probably get a lot of e-mails also telling you that it is not uncommonn to be sero negative and still have it. I will leave all the other questions up to the expert oldtimers here. My only advice to you is to not hesitate to write any question, no matter how silly you think it might be. Been there and done that and I can guarantee that the more you put in here and ask, the closer you will be to all and most importantly, the most informed you will be to tackle your illness. I continually tell my husband that I could have made it without the help and support and just plain common sense and human kindness. None of these here are willing to just lie down and give up and go along with anything told them. They are a challenge for any doctor! Love, wrote: > From: " " <veggie@...> > > rheumatic R Arthritis > > > From: " S.E. Rostas " <ser12@...> > > > > I have just joined this list and don't quite know what to expect! > > Oh oh! > > > I have had sero negative RA for about a year and a half. It has recently > > been largely in remission taking sulfasalazine and volterol (declofenac). > > Thats not remmission, thats keeping the sleeping giant contained. , > > > However I'm currently suddenly much worse and wondering why. > > > Your body has adjusted to the drugs you are currently taking and you will > have to change meds. This is very common. > > > I read something about avoiding mercury and it occurred to me that I did > > have to have a filling in my tooth replaced just about at the time that my > > arthritis came back forcibly....any thoughts on this? > > Metals can cause the immune system to malfunction, try testing for metals > and if mercury is a problem then go through a detox program. Could also be a > bacteria problem, maybe bacteria was released during the dental work. > > > > > What prompted me to join the list is that I've heard about minocycline as > > a treatment for RA but can't find anyobe in England who will give it any > > consideration whatsoever. Any thoughts on that? > > Any british people on the list? > > > > > > > I've also just heard about CMO (whose chemical name I didn't bring with me > > this afternoon). There is web site but currently its being reset up - so > > no info there either (its www.cmocure.net). Any information on this > > product? > > Its a scam > > > I'd be very gratefull for any help. The UK seems to be a bit behind on > > such matters - better to go on poisoning the patients on the well known > > cures than give them a chance to improve on - eg tetracycline! > > > > > > > > na Rostas > > Cambridge > > UK > > > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2000 Report Share Posted February 16, 2000 rheumatic R Arthritis > From: " S.E. Rostas " <ser12@...> > > I have just joined this list and don't quite know what to expect! Oh oh! > I have had sero negative RA for about a year and a half. It has recently > been largely in remission taking sulfasalazine and volterol (declofenac). Thats not remmission, thats keeping the sleeping giant contained. , > However I'm currently suddenly much worse and wondering why. > Your body has adjusted to the drugs you are currently taking and you will have to change meds. This is very common. > I read something about avoiding mercury and it occurred to me that I did > have to have a filling in my tooth replaced just about at the time that my > arthritis came back forcibly....any thoughts on this? Metals can cause the immune system to malfunction, try testing for metals and if mercury is a problem then go through a detox program. Could also be a bacteria problem, maybe bacteria was released during the dental work. > > What prompted me to join the list is that I've heard about minocycline as > a treatment for RA but can't find anyobe in England who will give it any > consideration whatsoever. Any thoughts on that? Any british people on the list? > > > I've also just heard about CMO (whose chemical name I didn't bring with me > this afternoon). There is web site but currently its being reset up - so > no info there either (its www.cmocure.net). Any information on this > product? Its a scam > I'd be very gratefull for any help. The UK seems to be a bit behind on > such matters - better to go on poisoning the patients on the well known > cures than give them a chance to improve on - eg tetracycline! > > > > na Rostas > Cambridge > UK Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2000 Report Share Posted February 16, 2000 Hi na At last another Brit! I live in N. Yorkshire and have had sero-negative RA for about 3 years. I found the rheumatic.org site and read all I could about AP therapy, then I got the book 'The New Arthritis Breakthrough' (A must!). When I put it to my Rh Doc about this therapy she was very sceptical initially, but at my last appointment she said I could try the treatment if I wanted. I am on Methotrexate 12.5mg weekly, which she said was up to me if I stopped it or not, so I am hoping to reduce it gradually. I started the AP therapy 3 weeks ago and I am on Tetracycline 250mg x 2 daily for 4 weeks then I will move up to 2 daily. I'm not sure whether I have seen any effects yet. I had a very bad D & V the other day, a bug I had obviously picked up, and lost a lot of fluid. I think it flushed out a lot of toxins and believe it or not my joints felt tons better, but they are bad again at the moment. My GP is very supportive of this treatment even though she doesnt know much about it, but what is there to lose by trying it - and probably everything to gain! This is a brilliant support group and everyone is very helpful and friendly. Ask any questions at all, someone always responds. I suggest you print off the FAQ's and give a copy to your GP to read and maybe even your Rh Doc. Apparantly a Dr Macworth Young at Charing Cross hospital is doing trials into this treatment. The Dr's name I was given who treats people in this country is Dr Graham A.W. Hornett The Surgery Wonersh Guilford Surrey GU5 OPE Tel: 01483 898123 e-mail Surgery@... I wrote to him and he both rang and wrote back to me, and suggested the treatment I am on (its the one he puts his patients on). My GP has also contacted him and he has even offered to see me if I wish. (its a long way from N.Yorksh. to Surrey so I'll hold off unless I really need to see him). I hope I haven't rambled and this is of any use to you. Take care and go for it!!! Please feel free to e-mail me any time if I can be of help, having said that I'm very new to this myself so this site is where you can get most information. Bye for now Carol :-) rheumatic R Arthritis >From: " S.E. Rostas " <ser12@...> > >I have just joined this list and don't quite know what to expect! > >I have had sero negative RA for about a year and a half. It has recently >been largely in remission taking sulfasalazine and volterol (declofenac). > >However I'm currently suddenly much worse and wondering why. > >I read something about avoiding mercury and it occurred to me that I did >have to have a filling in my tooth replaced just about at the time that my >arthritis came back forcibly....any thoughts on this? > > >What prompted me to join the list is that I've heard about minocycline as >a treatment for RA but can't find anyobe in England who will give it any >consideration whatsoever. Any thoughts on that? > > >I've also just heard about CMO (whose chemical name I didn't bring with me >this afternoon). There is web site but currently its being reset up - so >no info there either (its www.cmocure.net). Any information on this >product? > > >I'd be very gratefull for any help. The UK seems to be a bit behind on >such matters - better to go on poisoning the patients on the well known >cures than give them a chance to improve on - eg tetracycline! > > > >na Rostas >Cambridge >UK > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2000 Report Share Posted February 16, 2000 Hi I'm here. I have replied to na. I've haven't opened my email for a couple of days as I've had a tummy bug. (both ends kind) I lost 5lb overnight and I'm not very big to start with! Interestingly enough after I lost so much fluid for a couple of days after I felt great, as in no aches and pains. Could I have flushed out a lot of toxins do you think or is that too simplistic? Then a couple of days later the pain came back again with a vengeance! Bye for now Carol Re: rheumatic R Arthritis >From: Bob Fain <BobFain@...> > >WHERE IS CAROL WILKE? na, Welcome to this family. And that is probably >what it will become for you. Carol is somewhere in England - I don't know where >exactly, but if she is on the computer today and reads your message, you can be >assured you will hear from her. If she is away, then go ahead and e-mail her. >Her net address is carol@... If I remember correctly, >she is RA. Also, if you request, there is a list of doctors around this world >who practice AP on this site. I am sure that really comes in handy for some. >You will probably get a lot of e-mails also telling you that it is not uncommonn >to be sero negative and still have it. I will leave all the other questions up >to the expert oldtimers here. My only advice to you is to not hesitate to write >any question, no matter how silly you think it might be. Been there and done >that and I can guarantee that the more you put in here and ask, the closer you >will be to all and most importantly, the most informed you will be to tackle >your illness. I continually tell my husband that I could have made it without >the help and support and just plain common sense and human kindness. None of >these here are willing to just lie down and give up and go along with anything >told them. They are a challenge for any doctor! Love, > > wrote: > >> From: " " <veggie@...> >> >> rheumatic R Arthritis >> >> > From: " S.E. Rostas " <ser12@...> >> > >> > I have just joined this list and don't quite know what to expect! >> >> Oh oh! >> >> > I have had sero negative RA for about a year and a half. It has recently >> > been largely in remission taking sulfasalazine and volterol (declofenac). >> >> Thats not remmission, thats keeping the sleeping giant contained. , >> >> > However I'm currently suddenly much worse and wondering why. >> > >> Your body has adjusted to the drugs you are currently taking and you will >> have to change meds. This is very common. >> >> > I read something about avoiding mercury and it occurred to me that I did >> > have to have a filling in my tooth replaced just about at the time that my >> > arthritis came back forcibly....any thoughts on this? >> >> Metals can cause the immune system to malfunction, try testing for metals >> and if mercury is a problem then go through a detox program. Could also be a >> bacteria problem, maybe bacteria was released during the dental work. >> >> > >> > What prompted me to join the list is that I've heard about minocycline as >> > a treatment for RA but can't find anyobe in England who will give it any >> > consideration whatsoever. Any thoughts on that? >> >> Any british people on the list? >> >> > >> > >> > I've also just heard about CMO (whose chemical name I didn't bring with me >> > this afternoon). There is web site but currently its being reset up - so >> > no info there either (its www.cmocure.net). Any information on this >> > product? >> >> Its a scam >> >> > I'd be very gratefull for any help. The UK seems to be a bit behind on >> > such matters - better to go on poisoning the patients on the well known >> > cures than give them a chance to improve on - eg tetracycline! >> > >> > >> > >> > na Rostas >> > Cambridge >> > UK >> >> >> >> --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2000 Report Share Posted February 16, 2000 Hi, Again,Carol. I should have kept reading my e-mail before sending you the other note. I'll bet the VENGENCE is the beginning of the Herx. I cannot describe it to you except to liken it to what must be an all expense paid excusion into hell. If disease is in the brain, no wonder the headaches, blurred vision, unble to recall or add or subtract during herxes. If it is in the digestive system, why not the " flu like symptoms " described in our reading material? I had terrible diarrhea at first, then it just suddenly stopped. I have been through two herxes, neither of them the same intensity or in the same places. On another note, I did go with my husband today and purchased my world map in order to flag where each of you are. I paid $4.00 for it and it will fit nicely on the wall beside my computer. What a world traveler I am becoming! Hang in there! Carol Wilkie wrote: > From: " Carol Wilkie " <carol@...> > > Hi > I'm here. I have replied to na. I've haven't opened my email for a > couple of days as I've had a tummy bug. (both ends kind) I lost 5lb > overnight and I'm not very big to start with! Interestingly enough after I > lost so much fluid for a couple of days after I felt great, as in no aches > and pains. Could I have flushed out a lot of toxins do you think or is that > too simplistic? Then a couple of days later the pain came back again with a > vengeance! > Bye for now > Carol > Re: rheumatic R Arthritis > > >From: Bob Fain <BobFain@...> > > > >WHERE IS CAROL WILKE? na, Welcome to this family. And that is > probably > >what it will become for you. Carol is somewhere in England - I don't know > where > >exactly, but if she is on the computer today and reads your message, you > can be > >assured you will hear from her. If she is away, then go ahead and e-mail > her. > >Her net address is carol@... If I remember > correctly, > >she is RA. Also, if you request, there is a list of doctors around this > world > >who practice AP on this site. I am sure that really comes in handy for > some. > >You will probably get a lot of e-mails also telling you that it is not > uncommonn > >to be sero negative and still have it. I will leave all the other > questions up > >to the expert oldtimers here. My only advice to you is to not hesitate to > write > >any question, no matter how silly you think it might be. Been there and > done > >that and I can guarantee that the more you put in here and ask, the closer > you > >will be to all and most importantly, the most informed you will be to > tackle > >your illness. I continually tell my husband that I could have made it > without > >the help and support and just plain common sense and human kindness. None > of > >these here are willing to just lie down and give up and go along with > anything > >told them. They are a challenge for any doctor! Love, > > > > wrote: > > > >> From: " " <veggie@...> > >> > >> rheumatic R Arthritis > >> > >> > From: " S.E. Rostas " <ser12@...> > >> > > >> > I have just joined this list and don't quite know what to expect! > >> > >> Oh oh! > >> > >> > I have had sero negative RA for about a year and a half. It has > recently > >> > been largely in remission taking sulfasalazine and volterol > (declofenac). > >> > >> Thats not remmission, thats keeping the sleeping giant contained. , > >> > >> > However I'm currently suddenly much worse and wondering why. > >> > > >> Your body has adjusted to the drugs you are currently taking and you will > >> have to change meds. This is very common. > >> > >> > I read something about avoiding mercury and it occurred to me that I > did > >> > have to have a filling in my tooth replaced just about at the time that > my > >> > arthritis came back forcibly....any thoughts on this? > >> > >> Metals can cause the immune system to malfunction, try testing for metals > >> and if mercury is a problem then go through a detox program. Could also > be a > >> bacteria problem, maybe bacteria was released during the dental work. > >> > >> > > >> > What prompted me to join the list is that I've heard about minocycline > as > >> > a treatment for RA but can't find anyobe in England who will give it > any > >> > consideration whatsoever. Any thoughts on that? > >> > >> Any british people on the list? > >> > >> > > >> > > >> > I've also just heard about CMO (whose chemical name I didn't bring with > me > >> > this afternoon). There is web site but currently its being reset up - > so > >> > no info there either (its www.cmocure.net). Any information on this > >> > product? > >> > >> Its a scam > >> > >> > I'd be very gratefull for any help. The UK seems to be a bit behind on > >> > such matters - better to go on poisoning the patients on the well known > >> > cures than give them a chance to improve on - eg tetracycline! > >> > > >> > > >> > > >> > na Rostas > >> > Cambridge > >> > UK > >> > >> > >> > >> --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2000 Report Share Posted February 16, 2000 Maybe your immune system was busy fighting your other bug and gave your ra a couple days off. rheumatic R Arthritis > >> > >> > From: " S.E. Rostas " <ser12@...> > >> > > >> > I have just joined this list and don't quite know what to expect! > >> > >> Oh oh! > >> > >> > I have had sero negative RA for about a year and a half. It has > recently > >> > been largely in remission taking sulfasalazine and volterol > (declofenac). > >> > >> Thats not remmission, thats keeping the sleeping giant contained. , > >> > >> > However I'm currently suddenly much worse and wondering why. > >> > > >> Your body has adjusted to the drugs you are currently taking and you will > >> have to change meds. This is very common. > >> > >> > I read something about avoiding mercury and it occurred to me that I > did > >> > have to have a filling in my tooth replaced just about at the time that > my > >> > arthritis came back forcibly....any thoughts on this? > >> > >> Metals can cause the immune system to malfunction, try testing for metals > >> and if mercury is a problem then go through a detox program. Could also > be a > >> bacteria problem, maybe bacteria was released during the dental work. > >> > >> > > >> > What prompted me to join the list is that I've heard about minocycline > as > >> > a treatment for RA but can't find anyobe in England who will give it > any > >> > consideration whatsoever. Any thoughts on that? > >> > >> Any british people on the list? > >> > >> > > >> > > >> > I've also just heard about CMO (whose chemical name I didn't bring with > me > >> > this afternoon). There is web site but currently its being reset up - > so > >> > no info there either (its www.cmocure.net). Any information on this > >> > product? > >> > >> Its a scam > >> > >> > I'd be very gratefull for any help. The UK seems to be a bit behind on > >> > such matters - better to go on poisoning the patients on the well known > >> > cures than give them a chance to improve on - eg tetracycline! > >> > > >> > > >> > > >> > na Rostas > >> > Cambridge > >> > UK > >> > >> > >> > >> --------------------------- ONElist Sponsor ---------------------------- > >> > >> Get what you deserve with NextCard Visa. ZERO. Rates as low as 0.0 > >> percent Intro APR, online balance transfers, Rewards Points, no hidden > >> fees, and much more. Get NextCard today and get the credit you deserve. > >> Apply now! Get your NextCard Visa at > >> <a href= " http://clickme.onelist.com/ad/NextcardCreative6 " >Click > Here</a> > >> > >> ------------------------------------------------------------------------ > > > > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2000 Report Share Posted February 17, 2000 > Message: 22 > Date: Wed, 16 Feb 2000 20:40:44 -0000 > From: " Carol Wilkie " <carol@...> > Subject: Re: R Arthritis > > Hi > I'm here. I have replied to na. I've haven't opened my email for a > couple of days as I've had a tummy bug. (both ends kind) I lost 5lb > overnight and I'm not very big to start with! Interestingly enough after I > lost so much fluid for a couple of days after I felt great, as in no aches > and pains. Could I have flushed out a lot of toxins do you think or is that > too simplistic? Then a couple of days later the pain came back again with a > vengeance! > Bye for now > Carol Sorry - too simplistic. When the body is fasted, etc., it releases extra quantities of its own corticosteroids. You've experienced a " natural " relief that will be short-lived. Some folks make the mistake of trying to extend this sort of finding and end up starving themselves to escape the pain. That is a short-term no-gain solution that will get you in trouble - don't do it. Just be glad for the brief " detox " . BTW - that *IS* a detox and if you are considering altering your diet as a means of helping control the disease, you can make very good use of where you are now. HTH! Regards, Geoff Crenshaw, ACC ----------------------- Captain Cook's Cruise Center ** Usual Disclaimers ** ----------------------- Why do I have hope? Because I am under the blood of the Passover Lamb. EXO 12:7-3 / MAR 14:24 / REV 12:11 ICQ 60333388 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2000 Report Share Posted February 17, 2000 Dear na The 'frequently asked questions' can be accessed from the rheumatic.org site. I had them sent to me automatically for some reason and then just printed them off. I know exactly how you feel re the RH doc. Although I am lucky my GP (also female) is being very supportive. Having said that if it wasn't for this site I would be floundering. Because my GP and Rh doc don't know much about this treatment I am getting all my advice for them about it from the site. Do you have an Rh specialist nurse who you see? I sent as much information as I could to her and enlisted her help as she was willing to listen. I don't know what to suggest on how you can get them to even listen, just persevere by sending them stuff to read, especially your GP. It may even be worth writing to Dr Hornett, or get your GP to. She may be happier knowing someone in this country is using this treatment. I just kept telling my medical lot 'what have I got to lose by trying it!' Good luck and keep in touch. Carol rheumatic R Arthritis >> >> >> >From: " S.E. Rostas " <ser12@...> >> > >> >I have just joined this list and don't quite know what to expect! >> > >> >I have had sero negative RA for about a year and a half. It has recently >> >been largely in remission taking sulfasalazine and volterol (declofenac). >> > >> >However I'm currently suddenly much worse and wondering why. >> > >> >I read something about avoiding mercury and it occurred to me that I did >> >have to have a filling in my tooth replaced just about at the time that my >> >arthritis came back forcibly....any thoughts on this? >> > >> > >> >What prompted me to join the list is that I've heard about minocycline as >> >a treatment for RA but can't find anyobe in England who will give it any >> >consideration whatsoever. Any thoughts on that? >> > >> > >> >I've also just heard about CMO (whose chemical name I didn't bring with me >> >this afternoon). There is web site but currently its being reset up - so >> >no info there either (its www.cmocure.net). Any information on this >> >product? >> > >> > >> >I'd be very gratefull for any help. The UK seems to be a bit behind on >> >such matters - better to go on poisoning the patients on the well known >> >cures than give them a chance to improve on - eg tetracycline! >> > >> > >> > >> >na Rostas >> >Cambridge >> >UK >> > >> > >> >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2000 Report Share Posted February 17, 2000 I have onelist set up to mail the FAQ to the group every month. this is for the benefit of new people and also to prompt everyone to remind themselves of its contents on a regular basis. Chris. >From: " Carol Wilkie " <carol@...> >The 'frequently asked questions' can be accessed from the rheumatic.org >site. I had them sent to me automatically for some reason and then just >printed them off. I know exactly how you feel re the RH doc. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2000 Report Share Posted February 18, 2000 Dear na I'm actually on Tetracycline, not minocycline. I've just been told by my GP (who got a letter back from Dr Hornett) saying I can up my dose to 250mg x 2 daily. It will be interesting to see if it causes a herx. I believe that the effect doesn't wear off but you may still get flares or the herximer reaction, even while on the AP. I'm sure others who know a lot more about this will reply to this one for you. I'm still very new to it myself. I know that if the Tetracycline that I am taking doesn't seem to be working (Dr Hornett wrote that it can take AT LEAST six months before you notice any difference) then we may look at maybe changing to a different antibiotic, but certainly not for at least that. If it is working then I understand you can stay on the same one for years, or thats how I understood it from H. Scammels book. Don't worry about being wingey, we all get like that. I had hoped to be going back to work after half term, then my knee decided to pack up on me this morning (I'm a theatre nurse), and standing all day won't do it any good, so I'm off for yet another month. Luckily I've got some good books to read! Bye for now Carol rheumatic R Arthritis >> >> >> >> >> >> >From: " S.E. Rostas " <ser12@...> >> >> > >> >> >I have just joined this list and don't quite know what to expect! >> >> > >> >> >I have had sero negative RA for about a year and a half. It has recently >> >> >been largely in remission taking sulfasalazine and volterol >> (declofenac). >> >> > >> >> >However I'm currently suddenly much worse and wondering why. >> >> > >> >> >I read something about avoiding mercury and it occurred to me that I did >> >> >have to have a filling in my tooth replaced just about at the time that >> my >> >> >arthritis came back forcibly....any thoughts on this? >> >> > >> >> > >> >> >What prompted me to join the list is that I've heard about minocycline >> as >> >> >a treatment for RA but can't find anyobe in England who will give it any >> >> >consideration whatsoever. Any thoughts on that? >> >> > >> >> > >> >> >I've also just heard about CMO (whose chemical name I didn't bring with >> me >> >> >this afternoon). There is web site but currently its being reset up - so >> >> >no info there either (its www.cmocure.net). Any information on this >> >> >product? >> >> > >> >> > >> >> >I'd be very gratefull for any help. The UK seems to be a bit behind on >> >> >such matters - better to go on poisoning the patients on the well known >> >> >cures than give them a chance to improve on - eg tetracycline! >> >> > >> >> > >> >> > >> >> >na Rostas >> >> >Cambridge >> >> >UK >> >> > >> >> > >> >> >--------------------------- ONElist Sponsor ---------------------------- >> >> > >> >> >GET A NEXTCARD VISA, in 30 seconds! Get rates as low as 2.9 percent >> >> >Intro or 9.9 percent Fixed APR and no hidden fees. Apply NOW! >> >> ><a href= " http://clickme.onelist.com/ad/NextcardCreative4 " >Click >> Here</a> >> >> > >> >> >------------------------------------------------------------------------ >> >> > >> >> > >> >> > >> >> >> >> >> > >> > >> >> >> >> > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2000 Report Share Posted February 18, 2000 I have written this before and some criticized me but.... There is research which shows that several of the mycoplasmas have developed resistance to tetracycline. Therefore the docs who are treating mycoplasma infections are starting with doxycycline or minocycline - still in the tetracycline family but a newer drug. Personally, I wouldn't want to take tetracycline for 6 months for fear I would be wasting time. a Carnes > From: " Carol Wilkie " <carol@...> > > Dear na > I'm actually on Tetracycline, not minocycline. I've just been told by my GP > (who got a letter back from Dr Hornett) saying I can up my dose to 250mg x 2 > daily. It will be interesting to see if it causes a herx. I believe that > the effect doesn't wear off but you may still get flares or the herximer > reaction, even while on the AP. I'm sure others who know a lot more about > this will reply to this one for you. I'm still very new to it myself. I > know that if the Tetracycline that I am taking doesn't seem to be working > (Dr Hornett wrote that it can take AT LEAST six months before you notice any > difference) then we may look at maybe changing to a different antibiotic, > but certainly not for at least that. > If it is working then I understand you can stay on the same one for years, > or thats how I understood it from H. Scammels book. Don't worry about being > wingey, we all get like that. I had hoped to be going back to work after > half term, then my knee decided to pack up on me this morning (I'm a theatre > nurse), and standing all day won't do it any good, so I'm off for yet > another month. Luckily I've got some good books to read! > Bye for now > Carol > rheumatic R Arthritis > >> >> > >> >> > >> >> >From: " S.E. Rostas " <ser12@...> > >> >> > > >> >> >I have just joined this list and don't quite know what to expect! > >> >> > > >> >> >I have had sero negative RA for about a year and a half. It has > recently > >> >> >been largely in remission taking sulfasalazine and volterol > >> (declofenac). > >> >> > > >> >> >However I'm currently suddenly much worse and wondering why. > >> >> > > >> >> >I read something about avoiding mercury and it occurred to me that I > did > >> >> >have to have a filling in my tooth replaced just about at the time > that > >> my > >> >> >arthritis came back forcibly....any thoughts on this? > >> >> > > >> >> > > >> >> >What prompted me to join the list is that I've heard about > minocycline > >> as > >> >> >a treatment for RA but can't find anyobe in England who will give it > any > >> >> >consideration whatsoever. Any thoughts on that? > >> >> > > >> >> > > >> >> >I've also just heard about CMO (whose chemical name I didn't bring > with > >> me > >> >> >this afternoon). There is web site but currently its being reset up - > so > >> >> >no info there either (its www.cmocure.net). Any information on this > >> >> >product? > >> >> > > >> >> > > >> >> >I'd be very gratefull for any help. The UK seems to be a bit behind > on > >> >> >such matters - better to go on poisoning the patients on the well > known > >> >> >cures than give them a chance to improve on - eg tetracycline! > >> >> > > >> >> > > >> >> > > >> >> >na Rostas > >> >> >Cambridge > >> >> >UK > >> >> > > >> >> > > >> >> >--------------------------- ONElist > Sponsor ---------------------------- > >> >> > > >> >> >GET A NEXTCARD VISA, in 30 seconds! Get rates as low as 2.9 percent > >> >> >Intro or 9.9 percent Fixed APR and no hidden fees. Apply NOW! > >> >> ><a href= " http://clickme.onelist.com/ad/NextcardCreative4 " >Click > >> Here</a> > >> >> > > >> >> > >------------------------------------------------------------------------ > >> >> > > >> >> > > >> >> > > >> >> > >> >> > >> > > >> > > >> > >> > >> > >> > > > > > > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2000 Report Share Posted February 19, 2000 > From: SC <sasc@...> > > Could you send us some of the research on which tetracyclines > mycoplasmas are becoming resistant too? Seems like something we should > have in our info arsenal. I think the research articles I had on this were not ones I found on the internet, as I have known this for a long time prior to even having an internet connection. My recollection of this is that the first generation of tetracyclines which are called tetracycline are NOT effective. But the doxycycline and minocycline are FINE. I am sorry I can't locate this but you will note that Nicolson never mentions using tetracycline, just the doxycycline and minocycline from that tetracylcine family. You understand that even antibiotics in the same family are not identical and some are more effective than others. Here are a couple more quotes I found while hunting for what you wanted. > GREPAFLOXACIN POTENT IN VITRO AGAINST MYCOPLASMA, UREAPLASMA STRAINS > The new oral fluoroquinolone grepafloxacin appears to be among the most > active antibiotics in its class against Mycoplasma and Ureaplasma species. > http://id.medscape.com/4256.rhtml > Dr. Nicholson had updated his treatment protocol. It > can be found at http://www.immed.org. I also spoke > with him briefly on the phone and he said that many > people take two antibiotics at the same time. I asked > him which two and he stated Doxycycline and > Sparfloxacin. He also said that those with positive > viral testing use Famvir the first two weeks of a 6 > week cycle. He also told me that for the first 6 > months to take the antibiotics continually, and than > take them 6 weeks on, two off. Hope this helps some, a Carnes Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2000 Report Share Posted February 19, 2000 Hi a I can see your point about not wasting the time, unfortunately I have to take what my GP is prepared to give me. The Dr in Britain who is most experienced in this treatment gives this to his patients and recommended it. The reason he tends to stay clear of Minocycline is because of the risk of side effects (his words). I'm just grateful someone is willing to listen and let me have the AP. At least now I'm started on it and have my GP willing to let me try this treatment (and my Rh doc) I can maybe suggest alternatives if I feel nothing is happening. Carol ps. I'm starting my daily Tetracycline from monday 250mg x2 daily which I've been told I can take as one dose or 2 whichever I want. Any suggestions on this? rheumatic R Arthritis >> >> >> >> >> >> >> >> >> >From: " S.E. Rostas " <ser12@...> >> >> >> > >> >> >> >I have just joined this list and don't quite know what to expect! >> >> >> > >> >> >> >I have had sero negative RA for about a year and a half. It has >> recently >> >> >> >been largely in remission taking sulfasalazine and volterol >> >> (declofenac). >> >> >> > >> >> >> >However I'm currently suddenly much worse and wondering why. >> >> >> > >> >> >> >I read something about avoiding mercury and it occurred to me that >I >> did >> >> >> >have to have a filling in my tooth replaced just about at the time >> that >> >> my >> >> >> >arthritis came back forcibly....any thoughts on this? >> >> >> > >> >> >> > >> >> >> >What prompted me to join the list is that I've heard about >> minocycline >> >> as >> >> >> >a treatment for RA but can't find anyobe in England who will give >it >> any >> >> >> >consideration whatsoever. Any thoughts on that? >> >> >> > >> >> >> > >> >> >> >I've also just heard about CMO (whose chemical name I didn't bring >> with >> >> me >> >> >> >this afternoon). There is web site but currently its being reset >up - >> so >> >> >> >no info there either (its www.cmocure.net). Any information on this >> >> >> >product? >> >> >> > >> >> >> > >> >> >> >I'd be very gratefull for any help. The UK seems to be a bit behind >> on >> >> >> >such matters - better to go on poisoning the patients on the well >> known >> >> >> >cures than give them a chance to improve on - eg tetracycline! >> >> >> > >> >> >> > >> >> >> > >> >> >> >na Rostas >> >> >> >Cambridge >> >> >> >UK >> >> >> > >> >> >> > >> >> >> >--------------------------- ONElist >> Sponsor ---------------------------- >> >> >> > >> >> >> >GET A NEXTCARD VISA, in 30 seconds! Get rates as low as 2.9 >percent >> >> >> >Intro or 9.9 percent Fixed APR and no hidden fees. Apply NOW! >> >> >> ><a href= " http://clickme.onelist.com/ad/NextcardCreative4 " >Click >> >> Here</a> >> >> >> > >> >> >> >> >------------------------------------------------------------------------ >> >> >> > >> >> >> > >> >> >> > >> >> >> >> >> >> >> >> > >> >> > >> >> >> >> >> >> >> >> >> > >> > >> >> >> --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2000 Report Share Posted February 19, 2000 Can I jump in here? THE NEW ARTHRITIS BREAKTHROUGH, Page 261 says, the prolonged use of most antibiotics can indeed give eventual rise to an immune strain of germ. ...Tetracycline is different from all other antibiotics in that critical aspect: it affects the core of the germ...and therefore no immune strain of germs ever develops as a result of its use. pg. 290 talks about how over 40 years, Dr. Brown did not see any toxic effect in anybody. pg. 291. regarding d-penicillamine....for the first year helped....proved transitory. ....can cause problems with blood cell production in the bone marrow... " I have loaned out my book SCLERADERMA so I don't have that to peruse. I WILL say that Doctor Sinnott in Iowa, personally told me that the reason he uses Minocin is as explained above. He explained that Minicon IS tetracycline, only a newer, kinder form for one who is going to be doing this a long time. Now, where I want to really jump in and ask you guys, is rather than trying this or that, why are you not using the Minocin or Minocyline along with the IV Clindamycin or oral Clindamycin for the extra jump starts if the one alone is not giving the wanted results? Doctor Sinnott explained to me personally that if a patient is sick enough with symptoms to come to him, they are sick enough to warrant the clindamycin. (I do hate quoting people from my conversations.) What are you guys thoughts? a Carnes wrote: > From: a Carnes <paulajeanne@...> > > > From: SC <sasc@...> > > > > Could you send us some of the research on which tetracyclines > > mycoplasmas are becoming resistant too? Seems like something we should > > have in our info arsenal. > > I think the research articles I had on this were not ones I found on the > internet, as I have known this for a long time prior to even having an > internet connection. My recollection of this is that the first generation > of tetracyclines which are called tetracycline are NOT effective. But the > doxycycline and minocycline are FINE. I am sorry I can't locate this but > you will note that Nicolson never mentions using tetracycline, just the > doxycycline and minocycline from that tetracylcine family. You understand > that even antibiotics in the same family are not identical and some are more > effective than others. > Here are a couple more quotes I found while hunting for what you wanted. > > > GREPAFLOXACIN POTENT IN VITRO AGAINST MYCOPLASMA, UREAPLASMA STRAINS > > The new oral fluoroquinolone grepafloxacin appears to be among the most > > active antibiotics in its class against Mycoplasma and Ureaplasma species. > > http://id.medscape.com/4256.rhtml > > > Dr. Nicholson had updated his treatment protocol. It > > can be found at http://www.immed.org. I also spoke > > with him briefly on the phone and he said that many > > people take two antibiotics at the same time. I asked > > him which two and he stated Doxycycline and > > Sparfloxacin. He also said that those with positive > > viral testing use Famvir the first two weeks of a 6 > > week cycle. He also told me that for the first 6 > > months to take the antibiotics continually, and than > > take them 6 weeks on, two off. > > Hope this helps some, > a Carnes > > ------------------------------------------------------------------------ > 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! > 1/915/0/_/_/_/951009560/ > ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2000 Report Share Posted February 19, 2000 > I can see your point about not wasting the time, unfortunately I have to > take what my GP is prepared to give me. The Dr in Britain who is most > experienced in this treatment gives this to his patients and recommended it. Hi Carol, Don't be discouraged, I had a lot of improvement with just plain old tetracycline hydrochloride. It did not clear up the RA in all my joints, but I definitely had a herx reaction to it, and after two months, improvement in fatigue and sleep disturbance, followed by a near remission of awfully debilitating pain and swelling in my hands and feet after several more months. I started on this, because I had read The Road Back and requested tetracycline, and although my doctor had heard of using minocin, my insurance would not cover it. Later, I tried generic minocycline after joining the list here, and could not take it because of a strong reaction to it. Perhaps if you enjoy the same improvements from the tetracycline as I did, you doctor will be willing to go on to another other antibiotics if needed, once they see that the treatment does work, as my doctor did. I say this not to criticize you, a C., but because it is important for people to realize that just because there are resistant strains of some mycoplasmas developing out there, that does not necessarily mean that all individuals of all strains have developed resistance. If you can get the newer antibiotics, all the better your chances to wipe it out faster. It is rarely a fast treatment with RA in any event, especially if the RA is severe or long-standing. If the doctor involved will offer tetracycline and nothing else, it is worth a shot to try it. You can always add the other antibiotics later. I would not give up the resolution it has given me of a lifetime of sleep disturbance and the awful resulting fatigue for anything in the world. Last spring I felt better and more alive than I had in over 20 years, and while I still have some bad problems with some of my joints, I continue to feel much more human, and have more energy, less depression and pain, and last and most importantly, *hope* to see an end in sight to a lifetime of ill health. It was definitely the tetracycline that brought this to me, it creeps back in if I try and stop it for more than a week. If I had tried minocycline first, I may not have continued because of my reaction to it, and I would still be suffering from this and the awful toll it was taking on my life and my family's happiness. I have now added Biaxin in hopes of continued improvement, and am flaring up badly. I believe it is a herx reaction to it, as I experienced similar reactions to the tetracycline in my feet before it turned around to bring a great improvement for a time in all my joints. I started the tetracycline at 4x 250 per day, every day--my doctor was not " up " on the protocol and this is what he recommended. It worked fine for me, except that the reaction in my feet and hands was hard to deal with at times, not being able to walk more than about a city block at a stretch at the worst, not being able to turn a doorknob or open a jar unassisted for awhile. I would go on and give it a try at that dosage, just my personal opinion, because it may not be as strong as the minocin, but be ready to cut back to every other day, or even one 250mg every other day if it produces too strong a reaction for you. Just my opinion, and if some of our veterans like or Ethel recommend otherwise, do follow their advice instead, as I am just one person who has done it, and they have seem many, many people successfully through this. Don't forget to drink lots and lots of water and eat loads of vegetables to feel you best and help speed the healing. B-vitamins and fish oils have also helped me. Best of luck to you with it, and please write me if I can ever be of any help or encouragement. Sincerely, Liz G Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2000 Report Share Posted February 19, 2000 do you know if Dr Sinnott recommends daily or MWF Minocin? Thanks, Bob Fain wrote: > > From: Bob Fain <BobFain@...> > > Can I jump in here? THE NEW ARTHRITIS BREAKTHROUGH, Page 261 says, the > prolonged use of most antibiotics can indeed give eventual rise to an immune > strain of germ. ...Tetracycline is different from all other antibiotics in that > critical aspect: it affects the core of the germ...and therefore no immune > strain of germs ever develops as a result of its use. pg. 290 talks about how > over 40 years, Dr. Brown did not see any toxic effect in anybody. pg. 291. > regarding d-penicillamine....for the first year helped....proved transitory. > ...can cause problems with blood cell production in the bone marrow... " I have > loaned out my book SCLERADERMA so I don't have that to peruse. I WILL say that > Doctor Sinnott in Iowa, personally told me that the reason he uses Minocin is as > explained above. He explained that Minicon IS tetracycline, only a newer, > kinder form for one who is going to be doing this a long time. > Now, where I want to really jump in and ask you guys, is rather than trying > this or that, why are you not using the Minocin or Minocyline along with the IV > Clindamycin or oral Clindamycin for the extra jump starts if the one alone is > not giving the wanted results? Doctor Sinnott explained to me personally that > if a patient is sick enough with symptoms to come to him, they are sick enough > to warrant the clindamycin. (I do hate quoting people from my conversations.) > What are you guys thoughts? > > a Carnes wrote: > > > From: a Carnes <paulajeanne@...> > > > > > From: SC <sasc@...> > > > > > > Could you send us some of the research on which tetracyclines > > > mycoplasmas are becoming resistant too? Seems like something we should > > > have in our info arsenal. > > > > I think the research articles I had on this were not ones I found on the > > internet, as I have known this for a long time prior to even having an > > internet connection. My recollection of this is that the first generation > > of tetracyclines which are called tetracycline are NOT effective. But the > > doxycycline and minocycline are FINE. I am sorry I can't locate this but > > you will note that Nicolson never mentions using tetracycline, just the > > doxycycline and minocycline from that tetracylcine family. You understand > > that even antibiotics in the same family are not identical and some are more > > effective than others. > > Here are a couple more quotes I found while hunting for what you wanted. > > > > > GREPAFLOXACIN POTENT IN VITRO AGAINST MYCOPLASMA, UREAPLASMA STRAINS > > > The new oral fluoroquinolone grepafloxacin appears to be among the most > > > active antibiotics in its class against Mycoplasma and Ureaplasma species. > > > http://id.medscape.com/4256.rhtml > > > > > Dr. Nicholson had updated his treatment protocol. It > > > can be found at http://www.immed.org. I also spoke > > > with him briefly on the phone and he said that many > > > people take two antibiotics at the same time. I asked > > > him which two and he stated Doxycycline and > > > Sparfloxacin. He also said that those with positive > > > viral testing use Famvir the first two weeks of a 6 > > > week cycle. He also told me that for the first 6 > > > months to take the antibiotics continually, and than > > > take them 6 weeks on, two off. > > > > Hope this helps some, > > a Carnes > > > > ------------------------------------------------------------------------ > > 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! > > 1/915/0/_/_/_/951009560/ > > ------------------------------------------------------------------------ > > ------------------------------------------------------------------------ > What's the coolest new Web resource? It's the AskMe Page, which allows you > to have your own Q & A platform, interact with peers and earn rewards! It's > simple, fun & FREE! Get it now! Click here: > 1/1459/0/_/_/_/951021435/ > ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2000 Report Share Posted February 20, 2000 Liz: How much Biaxin are you taking along with the Minocin? I'm sure you've discussed this before but please bear with me. I had taken Biaxin once before for a sinus infection and thought it was a God-send. Since I suffer from chronic sinus problems (now have a nasty cold and, as usual, am all blocked up), I am interested in how you added this to your regimine. Thanks! Babs RA 8/98, DX 4/99, AP 11/99 200 mg. Minocin 2.5 mg. Methotrexate 112 mcg. Synthroid 2 mg. Hytrin 10 mg. Lipitor Mestinon Vits. & Misc. Suplmts. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2000 Report Share Posted February 20, 2000 Thanks Liz Your encouragement is gratefully accepted. I may not up the Tetracycline to x4 daily just yet and might just see how I get on. My GP is quite happy for me to be on this treatment so she may be willing to let me up the dose or change when I want to. I'll let you know how things progress. I always considered myself to be classed as mild to moderate disease, but after my knees packed up on me this weekend I'm not so sure. I can hardly believe I started about 3 years ago with one swollen index finger and sore bits on my back and now I can hardly walk some days. Still musn't grumble!!! Thanks Carol Re: rheumatic R Arthritis >From: " Liz G. " <pioneer@...> > > >> I can see your point about not wasting the time, unfortunately I have to >> take what my GP is prepared to give me. The Dr in Britain who is most >> experienced in this treatment gives this to his patients and recommended >it. > >Hi Carol, Don't be discouraged, I had a lot of improvement with just plain >old tetracycline hydrochloride. It did not clear up the RA in all my >joints, but I definitely had a herx reaction to it, and after two months, >improvement in fatigue and sleep disturbance, followed by a near remission >of awfully debilitating pain and swelling in my hands and feet after several >more months. I started on this, because I had read The Road Back and >requested tetracycline, and although my doctor had heard of using minocin, >my insurance would not cover it. Later, I tried generic minocycline after >joining the list here, and could not take it because of a strong reaction to >it. Perhaps if you enjoy the same improvements from the tetracycline as I >did, you doctor will be willing to go on to another other antibiotics if >needed, once they see that the treatment does work, as my doctor did. >I say this not to criticize you, a C., but because it is important for >people to realize that just because there are resistant strains of some >mycoplasmas developing out there, that does not necessarily mean that all >individuals of all strains have developed resistance. If you can get the >newer antibiotics, all the better your chances to wipe it out faster. It is >rarely a fast treatment with RA in any event, especially if the RA is severe >or long-standing. If the doctor involved will offer tetracycline and nothing >else, it is worth a shot to try it. You can always add the other antibiotics >later. > I would not give up the resolution it has given me of a lifetime of sleep >disturbance and the awful resulting fatigue for anything in the world. Last >spring I felt better and more alive than I had in over 20 years, and while I >still have some bad problems with some of my joints, I continue to feel much >more human, and have more energy, less depression and pain, and last and >most importantly, *hope* to see an end in sight to a lifetime of ill health. >It was definitely the tetracycline that brought this to me, it creeps back >in if I try and stop it for more than a week. If I had tried minocycline >first, I may not have continued because of my reaction to it, and I would >still be suffering from this and the awful toll it was taking on my life and >my family's happiness. I have now added Biaxin in hopes of continued >improvement, and am flaring up badly. I believe it is a herx reaction to >it, as I experienced similar reactions to the tetracycline in my feet before >it turned around to bring a great improvement for a time in all my joints. > I started the tetracycline at 4x 250 per day, every day--my doctor was not > " up " on the protocol and this is what he recommended. It worked fine for >me, except that the reaction in my feet and hands was hard to deal with at >times, not being able to walk more than about a city block at a stretch at >the worst, not being able to turn a doorknob or open a jar unassisted for >awhile. I would go on and give it a try at that dosage, just my personal >opinion, because it may not be as strong as the minocin, but be ready to cut >back to every other day, or even one 250mg every other day if it produces >too strong a reaction for you. Just my opinion, and if some of our veterans >like or Ethel recommend otherwise, do follow their advice instead, as >I am just one person who has done it, and they have seem many, many people >successfully through this. > Don't forget to drink lots and lots of water and eat loads of vegetables >to feel you best and help speed the healing. B-vitamins and fish oils have >also helped me. Best of luck to you with it, and please write me if I can >ever be of any help or encouragement. Sincerely, Liz G > > >------------------------------------------------------------------------ >Looking for the best new sites on the Web? eTour.com is a FREE >service that brings great websites right to you - matched to your >own unique interests. It's like having a personal remote control >for the Internet! >1/1675/0/_/_/_/951023909/ >------------------------------------------------------------------------ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2000 Report Share Posted February 20, 2000 - Just my thought...and I didn't take time to look this up in any resource material. I think the difference here is the name of the disease. I think that clindamycin is the best second drug for scleroderma. But that those with RA can get good results from zithromax or biaxin added to their minocycline. Judy Re: rheumatic R Arthritis > From: Bob Fain <BobFain@...> > > Can I jump in here? THE NEW ARTHRITIS BREAKTHROUGH, Page 261 says, the > prolonged use of most antibiotics can indeed give eventual rise to an immune > strain of germ. ...Tetracycline is different from all other antibiotics in that > critical aspect: it affects the core of the germ...and therefore no immune > strain of germs ever develops as a result of its use. pg. 290 talks about how > over 40 years, Dr. Brown did not see any toxic effect in anybody. pg. 291.. > regarding d-penicillamine....for the first year helped....proved transitory.. > ..can cause problems with blood cell production in the bone marrow... " I have > loaned out my book SCLERADERMA so I don't have that to peruse. I WILL say that > Doctor Sinnott in Iowa, personally told me that the reason he uses Minocin is as > explained above. He explained that Minicon IS tetracycline, only a newer, > kinder form for one who is going to be doing this a long time.. > Now, where I want to really jump in and ask you guys, is rather than trying > this or that, why are you not using the Minocin or Minocyline along with the IV > Clindamycin or oral Clindamycin for the extra jump starts if the one alone is > not giving the wanted results? Doctor Sinnott explained to me personally that > if a patient is sick enough with symptoms to come to him, they are sick enough > to warrant the clindamycin. (I do hate quoting people from my conversations.) > What are you guys thoughts? > > a Carnes wrote: > > > From: a Carnes <paulajeanne@...> > > > > > From: SC <sasc@...> > > > > > > Could you send us some of the research on which tetracyclines > > > mycoplasmas are becoming resistant too? Seems like something we should > > > have in our info arsenal.. > > > > I think the research articles I had on this were not ones I found on the > > internet, as I have known this for a long time prior to even having an > > internet connection. My recollection of this is that the first generation > > of tetracyclines which are called tetracycline are NOT effective. But the > > doxycycline and minocycline are FINE. I am sorry I can't locate this but > > you will note that Nicolson never mentions using tetracycline, just the > > doxycycline and minocycline from that tetracylcine family. You understand > > that even antibiotics in the same family are not identical and some are more > > effective than others.. > > Here are a couple more quotes I found while hunting for what you wanted.. > > > > > GREPAFLOXACIN POTENT IN VITRO AGAINST MYCOPLASMA, UREAPLASMA STRAINS > > > The new oral fluoroquinolone grepafloxacin appears to be among the most > > > active antibiotics in its class against Mycoplasma and Ureaplasma species.. > > > http://id.medscape.com/4256.rhtml > > > > > Dr. Nicholson had updated his treatment protocol. It > > > can be found at http://www.immed.org. I also spoke > > > with him briefly on the phone and he said that many > > > people take two antibiotics at the same time. I asked > > > him which two and he stated Doxycycline and > > > Sparfloxacin. He also said that those with positive > > > viral testing use Famvir the first two weeks of a 6 > > > week cycle. He also told me that for the first 6 > > > months to take the antibiotics continually, and than > > > take them 6 weeks on, two off.. > > > > Hope this helps some, > > a Carnes > > > > ------------------------------------------------------------------------ > > 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! > > 1/915/0/_/_/_/951009560/ > > ------------------------------------------------------------------------ > > > ------------------------------------------------------------------------ > What's the coolest new Web resource? It's the AskMe Page, which allows you > to have your own Q & A platform, interact with peers and earn rewards! It's > simple, fun & FREE! Get it now! Click here: > 1/1459/0/_/_/_/951021435/ > ------------------------------------------------------------------------ > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2000 Report Share Posted February 20, 2000 Back to you, Judy. When I was in Iowa, that week I was the only scleraderma. The rest were RA. I got to know one lady in particular as she and her husband were in the motel room next to me. She went the five day clindamycin treatment then was sent home on the oral Minocin. Her instructions were that she would continue the Minocin and did not have to come back for more clindamycin unless she felt she needed it. Because of my SD, I would need to do the monthly IV clindamycin and the five day every six months along with the Minocin orals. Same treatment - just one is hit more aggressively. judy wiebe wrote: > From: " judy wiebe " <deejay@...> > > - Just my thought...and I didn't take time to look this up in any > resource material. I think the difference here is the name of the disease. > I think that clindamycin is the best second drug for scleroderma. But that > those with RA can get good results from zithromax or biaxin added to their > minocycline. Judy > Re: rheumatic R Arthritis > > > From: Bob Fain <BobFain@...> > > > > Can I jump in here? THE NEW ARTHRITIS BREAKTHROUGH, Page 261 says, the > > prolonged use of most antibiotics can indeed give eventual rise to an > immune > > strain of germ. ...Tetracycline is different from all other antibiotics in > that > > critical aspect: it affects the core of the germ...and therefore no immune > > strain of germs ever develops as a result of its use. pg. 290 talks about > how > > over 40 years, Dr. Brown did not see any toxic effect in anybody. pg. > 291.. > > regarding d-penicillamine....for the first year helped....proved > transitory.. > > ..can cause problems with blood cell production in the bone marrow... " I > have > > loaned out my book SCLERADERMA so I don't have that to peruse. I WILL say > that > > Doctor Sinnott in Iowa, personally told me that the reason he uses Minocin > is as > > explained above. He explained that Minicon IS tetracycline, only a newer, > > kinder form for one who is going to be doing this a long time.. > > Now, where I want to really jump in and ask you guys, is rather than > trying > > this or that, why are you not using the Minocin or Minocyline along with > the IV > > Clindamycin or oral Clindamycin for the extra jump starts if the one alone > is > > not giving the wanted results? Doctor Sinnott explained to me personally > that > > if a patient is sick enough with symptoms to come to him, they are sick > enough > > to warrant the clindamycin. (I do hate quoting people from my > conversations.) > > What are you guys thoughts? > > > > a Carnes wrote: > > > > > From: a Carnes <paulajeanne@...> > > > > > > > From: SC <sasc@...> > > > > > > > > Could you send us some of the research on which tetracyclines > > > > mycoplasmas are becoming resistant too? Seems like something we should > > > > have in our info arsenal.. > > > > > > I think the research articles I had on this were not ones I found on the > > > internet, as I have known this for a long time prior to even having an > > > internet connection. My recollection of this is that the first > generation > > > of tetracyclines which are called tetracycline are NOT effective. But > the > > > doxycycline and minocycline are FINE. I am sorry I can't locate this > but > > > you will note that Nicolson never mentions using tetracycline, just the > > > doxycycline and minocycline from that tetracylcine family. You > understand > > > that even antibiotics in the same family are not identical and some are > more > > > effective than others.. > > > Here are a couple more quotes I found while hunting for what you > wanted.. > > > > > > > GREPAFLOXACIN POTENT IN VITRO AGAINST MYCOPLASMA, UREAPLASMA STRAINS > > > > The new oral fluoroquinolone grepafloxacin appears to be among the > most > > > > active antibiotics in its class against Mycoplasma and Ureaplasma > species.. > > > > http://id.medscape.com/4256.rhtml > > > > > > > Dr. Nicholson had updated his treatment protocol. It > > > > can be found at http://www.immed.org. I also spoke > > > > with him briefly on the phone and he said that many > > > > people take two antibiotics at the same time. I asked > > > > him which two and he stated Doxycycline and > > > > Sparfloxacin. He also said that those with positive > > > > viral testing use Famvir the first two weeks of a 6 > > > > week cycle. He also told me that for the first 6 > > > > months to take the antibiotics continually, and than > > > > take them 6 weeks on, two off.. > > > > > > Hope this helps some, > > > a Carnes > > > > > > ------------------------------------------------------------------------ > > > 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! > > > 1/915/0/_/_/_/951009560/ > > > ------------------------------------------------------------------------ > > > > > > ------------------------------------------------------------------------ > > What's the coolest new Web resource? It's the AskMe Page, which allows you > > to have your own Q & A platform, interact with peers and earn rewards! It's > > simple, fun & FREE! Get it now! Click here: > > 1/1459/0/_/_/_/951021435/ > > ------------------------------------------------------------------------ > > > > > > > > > > > > ------------------------------------------------------------------------ > Shabang!com is the place to get your FREE eStore, Absolutely FREE > Forever. If you have any desires to sell your products or services > online, or you want to expand your customer base for FREE, Come check > out Shabang!com FREE eStores! > 1/1299/0/_/_/_/951059598/ > ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2000 Report Share Posted February 20, 2000 > Liz: How much Biaxin are you taking along with the Minocin? I'm sure you've > discussed this before but please bear with me. I am still taking tetracycline as my first antibiotic, and have added Biaxin to that. I was told to take 250 mg every other day for a week, then go up to 2x 250 mg every other day, but after I went up to two tablets a day, it flared me to much and started interfering with my being able to function, so I went back down to 250 mg every MWF on the Biaxin and 2x 250mg on the tetracycline on Tu, Th. Weekends I take off to let my body catch up with clearing the toxins and rebuild the flora in the gut. At first the Biaxin seemed to be helping my sinuses, I think it did clear something there, but when I got the flu a month ago, I got an awful acute sinus infection along with it. I was given two weeks of Septra for that and it cleared them completely for awhile. Something seems to be coming back there a little (some drainage, but not sore like it was with the infection) so maybe there is still a little low-level infection going on there. When you are taking antibiotics everyday, it is hard to believe that there could still be other infections going on in spite of them, but my doctor said they were probably just selecting for the resistant organisms. I think he was right, because the Septra made a dramatic difference. This has also convinced me of the wisdom of taking the cycles of different antibiotics like Dr. Nicolson writes about. One would think that with overactive immune systems, infections wouldn't last very long, logicaly, but it seems to work the opposite. I think my immune system is so busy attacking the joints, that other infections may not get the attention from the immune system that is needed to completely clear them. Either it gets diverted before the work is finished, or it is just weakened from the constant activity. Just the way it feels to me. I have been troubled by hard-to-clear mild chronic infections off and on throughout my life. HTH. Liz G Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2000 Report Share Posted February 22, 2000 I'm not Liz, but have been on Biaxin for 8 years and recently with Minocin too, I take 500mg 2x/day. << Liz: How much Biaxin are you taking along with the Minocin? I'm sure you've discussed this before but please bear with me. I had taken Biaxin once before for a sinus infection and thought it was a God-send. Since I suffer from chronic sinus problems (now have a nasty cold and, as usual, am all blocked up), I am interested in how you added this to your regimine. Thanks! Babs >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2000 Report Share Posted March 3, 2000 Dear Carol, I'm sorry I've not been in touch for the last week and a half but I've been stuck at home, hardly able to move. This weekend hopefully I'll be setting up a modem there and able to e-mail more easily from now on. How is the tretracycline treatment going? I've talked to Dr Hornett briefly and he seems very nice and supportive. But I'm not getting anywhere on my home ground - except that my GP did offer to read a few articles on the treatment and I see her again on Monday. The hospital here seems to be completely closed to it - one of the nurses claims that the treatment is never discussed at (international) congresses etc...thus indicating she claims that it can't be meeting with much success. This week infact I've had a steriod injection. I can move again but feel very shakey (not quite myself) and not very sure about things. But it was marvellous to have a good nights sleep. na Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2000 Report Share Posted March 3, 2000 Hi na I'm sorry to hear you've been feeling so bad. I know just how you el:(( I'm pleased you got in touch with Dr Hornett. Have you told your GP about him? Or mentioned the trials at Charing Cross. It always helps to name drop. My GP wrote to Dr Hornett herself, which I think helped her make up her mind. I've been on my Tetracycline daily now for nearly 2 weeks (3 weeks before that MWF). I'm not sure whether it's working or not, or whether I'm having a herx. I've felt pretty grotty at times and I'm sleeping a lot at the moment, so maybe things are happening - fingers crossed! Keep passing the information on to your GP especially. All I kept saying to mine was, what have I got to lose, they give the same antibiotics all the time to spotty teenagers with acne, so it can't hurt! Would they be prepared to let you just try - thats what I said to mine, and luckily they let me. I think a steroid injection occasionally at least lets you function again and takes the pain away for a bit, unfortunately they never seem to work for me. Take care and good luck, and keep us posted. bye for now Carol :-) Re: rheumatic R Arthritis > >Dear Carol, > >I'm sorry I've not been in touch for the last week and a half but I've >been stuck at home, hardly able to move. > >This weekend hopefully I'll be setting up a modem there and able to >e-mail more easily from now on. > >How is the tretracycline treatment going? I've talked to Dr Hornett >briefly and he seems very nice and supportive. But I'm not getting >anywhere on my home ground - except that my GP did offer to read a few >articles on the treatment and I see her again on Monday. The hospital here >seems to be completely closed to it - one of the nurses claims that the >treatment is never discussed at (international) congresses etc...thus >indicating she claims that it can't be meeting with much success. > >This week infact I've had a steriod injection. I can move again but feel >very shakey (not quite myself) and not very sure about things. But it was >marvellous to have a good nights sleep. > >na > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2000 Report Share Posted March 7, 2000 Hi I'm on Tetracycline. Which is the trade name for that particular tetracycline. This was suggested to me because it is supposed to have less side effects. I think it may even be beginning to work, I'm sleeping much better, some of my joints feel a lot less stiff and painful and I have a bit more energy than usual! This after only 5 weeks. I know I've a long way to go yet but it's certainly made me feel a lot perkier:)) Bye Carol Re: rheumatic R Arthritis >> >> >> > >> >Dear Carol, >> > >> >I'm sorry I've not been in touch for the last week and a half but I've >> >been stuck at home, hardly able to move. >> > >> >This weekend hopefully I'll be setting up a modem there and able to >> >e-mail more easily from now on. >> > >> >How is the tretracycline treatment going? I've talked to Dr Hornett >> >briefly and he seems very nice and supportive. But I'm not getting >> >anywhere on my home ground - except that my GP did offer to read a few >> >articles on the treatment and I see her again on Monday. The hospital here >> >seems to be completely closed to it - one of the nurses claims that the >> >treatment is never discussed at (international) congresses etc...thus >> >indicating she claims that it can't be meeting with much success. >> > >> >This week infact I've had a steriod injection. I can move again but feel >> >very shakey (not quite myself) and not very sure about things. But it was >> >marvellous to have a good nights sleep. >> > >> >na >> > >> > >> >> >>------------------------------------------------------------------------ >>MAXIMIZE YOUR CARD, MINIMIZE 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! >>1/2122/0/_/532797/_/952111639/ >>------------------------------------------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
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