Guest guest Posted January 21, 2003 Report Share Posted January 21, 2003 Dave, why are you afraid of antibiotics? Also, how long would you be on this one? One concern you might have is that you may have other infections which would get worse on a " penacillin " antibiotic. What else have you been tested for? a > This is the first of my nasal swab results to come back positive. > The ENT doc recommends Flucloxacillin to erradicate it. > > I dont mind admitting I am very apprehensive about taking ABs so any > comments on this will be greatly appreciated. > > I have very little knowledge of this type of nasal infections so I > won't be doing anything untill I am sure I am not going to lose the > ground I have made up in the last year, regardless of what the ENT > man says. > > Regards > Dave x Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2003 Report Share Posted January 21, 2003 Dave FWIW, I took flucloxacillin for 3 weeks for a skin infection, impetigo, and it sent my CFS/ME into a pretty good remission for 6 months. I've been researching about blood cultures as opposed to nasal cultures, and it would seem that blood cultures will find more wrong with us than a nasal culture, since the nasal cavity cannot support the growth of l-forms because they are too fragile. These same l-forms won't culture positive in a normal gram culture because they are slow growing, they can also be intracellular as well as coexisting on the outers of red blood cells. This is what we have come up with for my diagnosis, since I have piccies showing the bacteria existing on my red blood cells yet I test negative on standard gram culturing. Dave > This is the first of my nasal swab results to come back positive. > The ENT doc recommends Flucloxacillin to erradicate it. > > I dont mind admitting I am very apprehensive about taking ABs so any > comments on this will be greatly appreciated. > > I have very little knowledge of this type of nasal infections so I > won't be doing anything untill I am sure I am not going to lose the > ground I have made up in the last year, regardless of what the ENT > man says. > > Regards > Dave x Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2003 Report Share Posted January 21, 2003 , there is good news re antibiotics. I have been on only one antibiotic, Zithromax. I never develop resistance, or rather the mycoplasma does not. I never have gut problems, never ever. I have no yeast problems. My immune system is now healthy and normal based on extensive immune system testing. When I go off Zithromax for 3 or 4 months I relapse but never have I ever gotten as sick as I was the first year without antibiotics. Now I know not everyone responds to antibiotics. I think some people have multiple infections including viruses. I was probably lucky to have just one. Also the Lyme cases that are bad probably have combinations of babasia, erhlichia and bergdoferi. But my point is that antibiotics for the rest of your life are far better than mycoplasma incognitus which will eventually kill you. a > a, I'm not speaking for Dave but I have studied lyme a bit now and I know > far too many people who went on AB, got " cured " and then got off and lyme > comes right back. I think you said you've been on them for way far longer > than a year and this is b/c mycoplasma just comes back? This may be why Dave > is scared, b/c of the idea of getting on them and then not being able to get > off, or messing up the gut, or harming the immune system, or getting worse > when coming off. Plenty reasons to be scared don't you think? I am saving > my AB prescriptions to be used only as last resort, after I am very sure I am > doing the right thing, not as first ditch effort. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2003 Report Share Posted January 21, 2003 That's an interesting abx choice. Did your doc explain his reasoning? Did the lab do sensitivities? Is that the reason he chose this abx? Or is he guessing? If it grew something positive, it should tell you exactly which abx it's sensitive to and which ones it will resist. You should keep having the pathology done regularly, testing for any new resistance and switching abx as necessary. penny > This is the first of my nasal swab results to come back positive. > The ENT doc recommends Flucloxacillin to erradicate it. > > I dont mind admitting I am very apprehensive about taking ABs so any > comments on this will be greatly appreciated. > > I have very little knowledge of this type of nasal infections so I > won't be doing anything untill I am sure I am not going to lose the > ground I have made up in the last year, regardless of what the ENT > man says. > > Regards > Dave x Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2003 Report Share Posted January 22, 2003 From the sensitivities list He gave me three or four choices but recommended Flucloxacillin. He phoned me inbetween patients so I didn't get to ask questions. I have asked his Sec. for a copy of results so I can look for resistances. Regards Dave x > > This is the first of my nasal swab results to come back positive. > > The ENT doc recommends Flucloxacillin to erradicate it. > > > > I dont mind admitting I am very apprehensive about taking ABs so > any > > comments on this will be greatly appreciated. > > > > I have very little knowledge of this type of nasal infections so I > > won't be doing anything untill I am sure I am not going to lose the > > ground I have made up in the last year, regardless of what the ENT > > man says. > > > > Regards > > Dave x Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2003 Report Share Posted January 22, 2003 Thanks Dave interesting, I will discuss this with a friendly microbiologist at the Hospital Regards Dave x > > This is the first of my nasal swab results to come back positive. > > The ENT doc recommends Flucloxacillin to erradicate it. > > > > I dont mind admitting I am very apprehensive about taking ABs so any > > comments on this will be greatly appreciated. > > > > I have very little knowledge of this type of nasal infections so I > > won't be doing anything untill I am sure I am not going to lose the > > ground I have made up in the last year, regardless of what the ENT > > man says. > > > > Regards > > Dave x Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2003 Report Share Posted January 22, 2003 a a few years after starting with CFS I had to take ABX for some reason which is now lost in the sands of time. I had a near death experience. I went into a semi-consious state which I usually describe thus: Imagine that you were lying underneath several layers of quilting which only allowed a tiny amount of air through and you were almost asphixiating but just hanging in there. Any little movement used up the oxygen and sent you into blackout. I lay there all day until my wife came home from work and sent for the Dr. That was 20 years ago. I have had ABXs since but I avoid the Older penicillin types. I guess it was some kind of Herx. but I was too ill to query it at the time. Well you did ask! :-) I was also tested for Fungus and some other test which he didn't seem to want to elabarate on so I let it go. I have asked for copies of the results and will post when they arrive. What would get worse on a Penicillin type AB? Thanks Dave x > Dave, why are you afraid of antibiotics? Also, how long would you be on this > one? One concern you might have is that you may have other infections which > would get worse on a " penacillin " antibiotic. What else have you been tested > for? > a > > > > This is the first of my nasal swab results to come back positive. > > The ENT doc recommends Flucloxacillin to erradicate it. > > > > I dont mind admitting I am very apprehensive about taking ABs so any > > comments on this will be greatly appreciated. > > > > I have very little knowledge of this type of nasal infections so I > > won't be doing anything untill I am sure I am not going to lose the > > ground I have made up in the last year, regardless of what the ENT > > man says. > > > > Regards > > Dave x Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2003 Report Share Posted January 22, 2003 Dave, I've always been very anti antibiotics myself, until I realized what we're dealing with here, and until I took a 6 week course of Cipro and started feeling that I was getting my life back. For me, I've really had no side effects whatsoever on the antibiotics, and I know many people who fare equally well. You are SO incredibly lucky to have your sensitivities, so that you can use the CORRECT antibiotic. This is almost impossible for so many people to get done, even though they're very sick. And taking the right antibiotic should help reduce the risk of nasty side effects, or creating more powerful bugs. You are very fortunate. I'd be on those abx immediately, now that I understand how difficult it is to eradicate this staph. Especially if it's gotten into your teeth, or bones. How long have you been sick? Any dental problems or root canals? Who's your doc again? penny > > > This is the first of my nasal swab results to come back positive. > > > The ENT doc recommends Flucloxacillin to erradicate it. > > > > > > I dont mind admitting I am very apprehensive about taking ABs so > > any > > > comments on this will be greatly appreciated. > > > > > > I have very little knowledge of this type of nasal infections so > I > > > won't be doing anything untill I am sure I am not going to lose > the > > > ground I have made up in the last year, regardless of what the > ENT > > > man says. > > > > > > Regards > > > Dave x Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2003 Report Share Posted January 22, 2003 HI, I don't have the reference, but certainly mycoplasmas which are found in 70% of cfs patients would NOT respond to penicillin, and you would be needlessly exposed to the very risks you describe. Of course, anyone can have an anaphalactic reaction to something, even peanuts. Antibiotics are a risk. If I were you and had to take an antibiotic I guess I would take the first dose in the hospital or doctor's office and sit there a few hours. Having said that I want to repeat that if mycoplasma or c. pneumoniae is the cause of your cfs you are not going to recover without the appropriate antibiotics. Well, maybe Ampligen or some new drug in research will work. Meanwhile antibiotics may work if taken long enough and with the correct antibiotic for what you are infected with. I am also on the same page with those who mention other stealth bacteria. Shoemaker makes a lot of sense. I think I have mentioned that c. pneumonia can be killed and still giving off toxins in the body. This would also fit Shoemaker's research picture. a > a > a few years after starting with CFS I had to take ABX for some > reason which is now lost in the sands of time. > I had a near death experience. I went into a semi-consious state > which I usually describe thus: > Imagine that you were lying underneath several layers of quilting > which only allowed a tiny amount of air through and you were almost > asphixiating but just hanging in there. Any little movement used up > the oxygen and sent you into blackout. > I lay there all day until my wife came home from work and sent for > the Dr. That was 20 years ago. > I have had ABXs since but I avoid the Older penicillin types. > I guess it was some kind of Herx. but I was too ill to query it at > the time. > Well you did ask! :-) > > I was also tested for Fungus and some other test which he didn't seem > to want to elabarate on so I let it go. I have asked for copies of > the results and will post when they arrive. > > What would get worse on a Penicillin type AB? > > Thanks > Dave x > > > > > Dave, why are you afraid of antibiotics? Also, how long would you > be on this > > one? One concern you might have is that you may have other > infections which > > would get worse on a " penacillin " antibiotic. What else have you > been tested > > for? > > a > > > > > > > This is the first of my nasal swab results to come back positive. > > > The ENT doc recommends Flucloxacillin to erradicate it. > > > > > > I dont mind admitting I am very apprehensive about taking ABs so > any > > > comments on this will be greatly appreciated. > > > > > > I have very little knowledge of this type of nasal infections so I > > > won't be doing anything untill I am sure I am not going to lose > the > > > ground I have made up in the last year, regardless of what the ENT > > > man says. > > > > > > Regards > > > Dave x > > > This list is intended for patients to share personal experiences with each other, not to give medical advice. If you are interested in any treatment discussed here, please consult your doctor. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2003 Report Share Posted January 22, 2003 Dave, Sounds like a severe allergic reaction to me. I would stay away from the penicillin family altogether. penny > > Dave, why are you afraid of antibiotics? Also, how long would you > be on this > > one? One concern you might have is that you may have other > infections which > > would get worse on a " penacillin " antibiotic. What else have you > been tested > > for? > > a > > > > > > > This is the first of my nasal swab results to come back positive. > > > The ENT doc recommends Flucloxacillin to erradicate it. > > > > > > I dont mind admitting I am very apprehensive about taking ABs so > any > > > comments on this will be greatly appreciated. > > > > > > I have very little knowledge of this type of nasal infections so I > > > won't be doing anything untill I am sure I am not going to lose > the > > > ground I have made up in the last year, regardless of what the ENT > > > man says. > > > > > > Regards > > > Dave x Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2003 Report Share Posted January 22, 2003 Hi a, " Having said that I want to repeat that if mycoplasma or c. pneumoniae is the cause of your cfs you are not going to recover without the appropriate antibiotics. " I would like to ask your opinion on my case. I just remembered after reading your note that I had c. pneumoniae infection in 1998. I was treated with some antibiotic at that time and symptoms disappeared. Than I never felt a need to have it checked again. I have cfs since 1989 and I wonder what having c. pneumoniae in 1989 contributes to my illness.It seems that it is not the cause of the illness but I wonder if I still have it.(I don't have any infection symptoms)Should I have this checked? I am bain fogged . Hope I have clearly explained my concern. Thanks. Nil Re: Re: CNS aureus positive result | HI, | I don't have the reference, but certainly mycoplasmas which are found in 70% | of cfs patients would NOT respond to penicillin, and you would be needlessly | exposed to the very risks you describe. Of course, anyone can have an | anaphalactic reaction to something, even peanuts. Antibiotics are a risk. If | I were you and had to take an antibiotic I guess I would take the first dose | in the hospital or doctor's office and sit there a few hours. Having said | that I want to repeat that if mycoplasma or c. pneumoniae is the cause of | your cfs you are not going to recover without the appropriate antibiotics. | Well, maybe Ampligen or some new drug in research will work. Meanwhile | antibiotics may work if taken long enough and with the correct antibiotic | for what you are infected with. I am also on the same page with those who | mention other stealth bacteria. Shoemaker makes a lot of sense. I think I | have mentioned that c. pneumonia can be killed and still giving off toxins | in the body. This would also fit Shoemaker's research picture. | a | | | > a | > a few years after starting with CFS I had to take ABX for some | > reason which is now lost in the sands of time. | > I had a near death experience. I went into a semi-consious state | > which I usually describe thus: | > Imagine that you were lying underneath several layers of quilting | > which only allowed a tiny amount of air through and you were almost | > asphixiating but just hanging in there. Any little movement used up | > the oxygen and sent you into blackout. | > I lay there all day until my wife came home from work and sent for | > the Dr. That was 20 years ago. | > I have had ABXs since but I avoid the Older penicillin types. | > I guess it was some kind of Herx. but I was too ill to query it at | > the time. | > Well you did ask! :-) | > | > I was also tested for Fungus and some other test which he didn't seem | > to want to elabarate on so I let it go. I have asked for copies of | > the results and will post when they arrive. | > | > What would get worse on a Penicillin type AB? | > | > Thanks | > Dave x | > | > | > | > > Dave, why are you afraid of antibiotics? Also, how long would you | > be on this | > > one? One concern you might have is that you may have other | > infections which | > > would get worse on a " penacillin " antibiotic. What else have you | > been tested | > > for? | > > a | > > | > > | > > > This is the first of my nasal swab results to come back positive. | > > > The ENT doc recommends Flucloxacillin to erradicate it. | > > > | > > > I dont mind admitting I am very apprehensive about taking ABs so | > any | > > > comments on this will be greatly appreciated. | > > > | > > > I have very little knowledge of this type of nasal infections so I | > > > won't be doing anything untill I am sure I am not going to lose | > the | > > > ground I have made up in the last year, regardless of what the ENT | > > > man says. | > > > | > > > Regards | > > > Dave x | > | > | > This list is intended for patients to share personal experiences with each | other, not to give medical advice. If you are interested in any treatment | discussed here, please consult your doctor. | > | > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2003 Report Share Posted January 22, 2003 Nil, you can get a PCR test for c. pneumoniae. Research is discovering that this bacteria can become intracellular and systemic. In fact it may contribute to the plaques that clog arteries and cause heart attacks. This form of it, systemic, is found in a fair percentage of us CFIDSers. I would suggest you get tested for it at ImmunoScience Lab in Beverly Hills. Try if you can, to just get one test done rather than a panel. Also, I would suggest you not be on any antibiotics for about 3 months before getting tested. These germs can clear from the blood while on antibiotics and still be in other tissue such as lymph and bone marrow. Let me know if you need me to look up the lab, but you can find it online doing a websearch. a > I have cfs since 1989 and I wonder what having c. pneumoniae in 1989 > contributes to my illness.It seems that it is not the cause of the illness > but I wonder if I still have it.(I don't have any infection symptoms)Should > I have this checked? > I am bain fogged . Hope I have clearly explained my concern. > Thanks. > Nil > > Re: Re: CNS aureus positive result > > > | HI, > | I don't have the reference, but certainly mycoplasmas which are found in > 70% > | of cfs patients would NOT respond to penicillin, and you would be > needlessly > | exposed to the very risks you describe. Of course, anyone can have an > | anaphalactic reaction to something, even peanuts. Antibiotics are a risk. > If > | I were you and had to take an antibiotic I guess I would take the first > dose > | in the hospital or doctor's office and sit there a few hours. Having said > | that I want to repeat that if mycoplasma or c. pneumoniae is the cause of > | your cfs you are not going to recover without the appropriate antibiotics. > | Well, maybe Ampligen or some new drug in research will work. Meanwhile > | antibiotics may work if taken long enough and with the correct antibiotic > | for what you are infected with. I am also on the same page with those who > | mention other stealth bacteria. Shoemaker makes a lot of sense. I think I > | have mentioned that c. pneumonia can be killed and still giving off toxins > | in the body. This would also fit Shoemaker's research picture. > | a > | > | > | > a > | > a few years after starting with CFS I had to take ABX for some > | > reason which is now lost in the sands of time. > | > I had a near death experience. I went into a semi-consious state > | > which I usually describe thus: > | > Imagine that you were lying underneath several layers of quilting > | > which only allowed a tiny amount of air through and you were almost > | > asphixiating but just hanging in there. Any little movement used up > | > the oxygen and sent you into blackout. > | > I lay there all day until my wife came home from work and sent for > | > the Dr. That was 20 years ago. > | > I have had ABXs since but I avoid the Older penicillin types. > | > I guess it was some kind of Herx. but I was too ill to query it at > | > the time. > | > Well you did ask! :-) > | > > | > I was also tested for Fungus and some other test which he didn't seem > | > to want to elabarate on so I let it go. I have asked for copies of > | > the results and will post when they arrive. > | > > | > What would get worse on a Penicillin type AB? > | > > | > Thanks > | > Dave x > | > > | > > | > > | > > Dave, why are you afraid of antibiotics? Also, how long would you > | > be on this > | > > one? One concern you might have is that you may have other > | > infections which > | > > would get worse on a " penacillin " antibiotic. What else have you > | > been tested > | > > for? > | > > a > | > > > | > > > | > > > This is the first of my nasal swab results to come back positive. > | > > > The ENT doc recommends Flucloxacillin to erradicate it. > | > > > > | > > > I dont mind admitting I am very apprehensive about taking ABs so > | > any > | > > > comments on this will be greatly appreciated. > | > > > > | > > > I have very little knowledge of this type of nasal infections so I > | > > > won't be doing anything untill I am sure I am not going to lose > | > the > | > > > ground I have made up in the last year, regardless of what the ENT > | > > > man says. > | > > > > | > > > Regards > | > > > Dave x > | > > | > > | > 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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