Guest guest Posted May 27, 2006 Report Share Posted May 27, 2006 So Tony what specifically are the findings? I know about the staph toxin vaccine trial they did, and how CFSers improved from it. Pretty impressive. I keep that on the table and think about it sometimes. My main thing there is that I dont know enough to know whether a vaccination could have some sort of a non-specific effect that would make people feel better. So I dont know if I can conclude staph toxin is involved in the disease. I know about the urine metabolite CFSUM1 or whatever. I think thats what was disconfirmed by another group. Is there anything else? Do they have data on subtle differences in red cell counts, or is that data that you have on yourself? Personally, my *guess* is that even if someone has CFS/etc from staph, the primary issue with getting rid of it is *not* going to be specific drug resistences... rather it will be physiologic resistance due to the staph being in a slow growth state. I know this doesnt tally all that well with your and Pennys experiences tho. But it does tally with lots of other stuff so I keep trying with it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2006 Report Share Posted May 27, 2006 I'm glad you keep with it, . I think there may very well be a physiologic factor involved. It's just that the only people I know who've really recovered have done aggressive, multiple antimicrobial therapies. If people won't start acknowledging the bugs themselves, how will we ever make any headway in finding effective methods to combat the bugs' foothold???? penny <usenethod@...> wrote: So Tony what specifically are the findings?I know about the staph toxin vaccine trial they did, and how CFSers improved from it. Pretty impressive. I keep that on the table and think about it sometimes. My main thing there is that I dont know enough to know whether a vaccination could have some sort of a non-specific effect that would make people feel better. So I dont know if I can conclude staph toxin is involved in the disease.I know about the urine metabolite CFSUM1 or whatever. I think thats what was disconfirmed by another group.Is there anything else? Do they have data on subtle differences in red cell counts, or is that data that you have on yourself?Personally, my *guess* is that even if someone has CFS/etc from staph, the primary issue with getting rid of it is *not* going to be specific drug resistences... rather it will be physiologic resistance due to the staph being in a slow growth state. I know this doesnt tally all that well with your and Pennys experiences tho. But it does tally with lots of other stuff so I keep trying with it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2006 Report Share Posted May 27, 2006 <pennyhoule@...> wrote: > I think there may very well be a physiologic factor involved. It's just that the only people I know who've really recovered have done aggressive, multiple antimicrobial therapies. These things dont contradict, tho. Heavy combo treatment is just whats called for by the way I'm seeing things. I've always been totally in favor of combo treatment, but havent had a close molecular rationale for that view. Now I think I do. I'm seeing some really new perspectives lately. I still need to work some stuff out tho. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2006 Report Share Posted May 27, 2006 The red cells are just my own observations they just don't look great if you have fibro or even MS. The subtle changes of the cells should be where you'd want people to look closer(toxin mediated IMO) instead of trying to unlock the genetic code of the dna fragments that seems to be what the researchers try and do- whenever anything stands out like a sore thumb it's ignored IMO. The newcastle group would look carefully at the toxin expression of the sinus bacteria. The autism cfs link pretty much was observed at the first hurdle.I do recall the cfsers where right alongside the autistic group with the sinus swab and toxin expression data that was available early in the piece. The part of the picture that didn't work in cfs was the treatment, no-one is willing to do anything outside the box especially not the newcastle research team. You clearly saw the Blood borne bacteria article of earlier in the week and what was required. as you can observe no-one is practising like that outside of a few of us die hards that can get drugs. Double antibiotic regimes don't even truly exist...It's pretty STUPID to think that a sinus cavity which rates very diseased isn't going to impact the brain- often the brain is mere millimeters away and INFLAMMATION has never, ever, ever, ever, ever in the history of medicine confined itself to a small corner of the anatomy.. like I think I'm only going to fry a little of this persons fringe- as if inflammation is that well contained and trim and proper in it's presentation( bring on the brain lesions(jk)) IMO. tony > > So Tony what specifically are the findings? > > I know about the staph toxin vaccine trial they did, and how CFSers > improved from it. Pretty impressive. I keep that on the table and think > about it sometimes. My main thing there is that I dont know enough to > know whether a vaccination could have some sort of a non-specific > effect that would make people feel better. So I dont know if I can > conclude staph toxin is involved in the disease. > > I know about the urine metabolite CFSUM1 or whatever. I think thats > what was disconfirmed by another group. > > Is there anything else? Do they have data on subtle differences in red > cell counts, or is that data that you have on yourself? > > Personally, my *guess* is that even if someone has CFS/etc from staph, > the primary issue with getting rid of it is *not* going to be specific > drug resistences... rather it will be physiologic resistance due to the > staph being in a slow growth state. I know this doesnt tally all that > well with your and Pennys experiences tho. But it does tally with lots > of other stuff so I keep trying with it. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2006 Report Share Posted May 28, 2006 well that's definitely what I like to hear. Keep us posted. penny <usenethod@...> wrote: <pennyhoule@...> wrote:> I think there may very well be a physiologic factor involved. It's just that the only people I know who've really recovered have done aggressive, multiple antimicrobial therapies.These things dont contradict, tho. Heavy combo treatment is just whats called for by the way I'm seeing things. I've always been totally in favor of combo treatment, but havent had a close molecular rationale for that view. Now I think I do. I'm seeing some really new perspectives lately. I still need to work some stuff out tho. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2006 Report Share Posted May 28, 2006 I aggree with agressive multiple antimicrobial therapy, and switching around a lot. I really think that is the ticket. You have got to find a doctor that is willing to get very agressive. I think the key is getting a doc that can understand your severity, and the alternative for you in not getting aggressive. I actually took it a step further and added more abx to the already agressive treatment. Many docs are scared to treat. They don't want the liability of hurting you. Most don't understand how benign the long term antibiotic treatment can be to your system. There are three things that I always emphatically stress to my doc that aI am doing. They are: 1) Take lots of acidophilous. 2) Take good milk thistle. 3) Drink lots of water. I want my doc to be positive that I am helping them to help me while staying out of trouble. Last report of my organs show excellent liver and kidney enzymes. I attribute this to quality milk thistle twice a day while on macs or kets (liver metabolized), and lots and lots of water while on any antibiotic, but especially for doxy or mino (kidney excretion), as you must keep what's in the kidney's VERY DILUTE with water. Try for a gallon a day. > > I think there may very well be a physiologic factor involved. It's > just that the only people I know who've really recovered have done > aggressive, multiple antimicrobial therapies. > > These things dont contradict, tho. Heavy combo treatment is just whats > called for by the way I'm seeing things. > > I've always been totally in favor of combo treatment, but havent had a > close molecular rationale for that view. Now I think I do. I'm seeing > some really new perspectives lately. I still need to work some stuff > out tho. > > > > > > Quote Link to comment Share on other sites More sharing options...
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