Guest guest Posted August 21, 2005 Report Share Posted August 21, 2005 You might be interested in the new Kerr and Gow CFS gene expression studies... I posted a bit on that stuff yesterday. Havent read their stuff but apparantly at least one of them looked at MHC I and MHC II expression, which could give an indication of Th1 / Th2 balance, and they found a striking imbalance. Hopefully this stuff will end up being alot more reproducible than the non-gene-expression CFS immunology has been. Unfortunately from stuff Ive seen elsewhere, it sorta looks like gene expression quantification techniques may be far from perfect. I dono. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2005 Report Share Posted August 22, 2005 But the problem is, these bugs are so frikkin' adaptable. Even if we do figure out how to change (I'm not going to say " fix " ) our immune systems to combat bugs in general (which do NOT all operate the same way), how long will it last? Bacteria have adapted to everything we've thought of so far. And unfortunately, we're not spending enough time identifying which specific bugs we're dealing with and how they operate so that we've got a better chance of fighting them. I'm sorry, but I think the bugs are more adaptable than we are, so while we are trying to increase our own immune system function, we should ALSO be looking for something that blows these bugs away (at least out of OUR systems) that they CAN'T adapt to. If we don't fight from both angles, we just end up repeating the whole endless cycle over and over again. Which is exactly what we've been doing for how long now? Also, I'd like to point out that the people who HAVE done hard core, very high dose abx and cured themselves, seem to have much higher functioning immune systems now, without doing a whole lot to enhance them. They simply rid themselves of their infections and they're now doing fine, while staying on guard for any signs of re-infection. Those pwc who aren't doing so well are the ones who are working in the dark, tinkering around with drugs and immune boosting supplements, jumping from one to the next. That's what Tony get's frustrated about. He took VERY high dose abx, and he's well. I know others like him, went into the hospital, contracted staph which almost killed them but were saved from death by high, high dose i.v. abx, and waht do yo know, they walked out of the hospital with their FMS/CFS cured. Hello people? Doesn't this deserve as much of a look as all this theoretical immune system boosting stuff which, as far as I can tell, hasn't cured too many people yet, even though we've been doing it for years? Like I said, I'm all for helping our immune systems, but it seems pointless if we don't know which bugs we're dealing with, or how they work. penny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2005 Report Share Posted August 22, 2005 > He took VERY high dose abx, and he's well. I know others like him, > went into the hospital, contracted staph which almost killed them but > were saved from death by high, high dose i.v. abx, and waht do yo > know, they walked out of the hospital with their FMS/CFS cured. I'd definitely read closely if you have the energy to tell us about each of these people, their hx of illness, their labs at various times, what tx they did prior to hospitalization, the drug regimes they took in the hospital, whether they are now able to do heavy exercise, how long theyve been cured, etc etc - in short everything remotely relevant. And whether you know others with a similar trajectory who *didnt* get cured. I know some others on here would pay close attention too. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2005 Report Share Posted August 22, 2005 Can't report a lot because, as you know, when people suddenly get well they disappear. It's hard to not want to get on with your life. This was a long. long time ago. I read these reports of accidental healing on CFS and thyroid forums, and it fed my conviction that I might be dealing with an infection, not an autoimmune disease. At that time, I was a lone voice in the wilderness, other than the mad man Tony, who came on the scene, trying to tell all those people on the CFS/FMS forums that they were infected. And they'd scream he was nuts or some kind of devil and ban him from the site. Then someone would come on and say, 'hey I also got cured of FMS after going to the hospital and acquiring a staph infection while there. I went into the hospital in a wheel chair to have a procedure performed (like fibroids, appendicitis, etc.) contracted staph there, almost died except for extremely high dose i.v. abx and came out walking on my own two feet!' Of course everyone then screamed that they couldn't have really HAD CFS or FMS because there is NO cure! Gawd, it drove me nuts!!!! Of course, the person would disappear under the attack when all they were trying to do was help. It's not a whole lot better now when people try to suggest something other than the conventional wisdom, but at least some infections are being looked at and being linked to CFS, i.e. lyme, mycoplasma. Although truthfully, I think the forest is being missed for the trees. penny > > > He took VERY high dose abx, and he's well. I know others like him, > > went into the hospital, contracted staph which almost killed them > but > > were saved from death by high, high dose i.v. abx, and waht do yo > > know, they walked out of the hospital with their FMS/CFS cured. > > I'd definitely read closely if you have the energy to tell us about > each of these people, their hx of illness, their labs at various > times, what tx they did prior to hospitalization, the drug regimes > they took in the hospital, whether they are now able to do heavy > exercise, how long theyve been cured, etc etc - in short everything > remotely relevant. And whether you know others with a similar > trajectory who *didnt* get cured. I know some others on here would pay > close attention too. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2005 Report Share Posted August 22, 2005 Ummm, well which bugs did they have and which antibiotics did they take, and in which combo, and did they test for abx sensititivy? See, just throwing random drugs at something is no guarantee. Remember my first cultures came back showing that my bugs were resistant to 12 of the first 14 abx they tested. So, how good would my odds have been with treatment, if I hadn't had that information? penny > Dr Bill Harvey & his wife took/taking high dose IV drugs [abx] Bill is not > doing too bad but is still not cured ..I believe his wife has not responded > so well and is still virtually bed ridden .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2005 Report Share Posted August 23, 2005 Penny That lady that come on the cfs forum a couple of years ago claiming cured after endometreosis surgey was what you were trying to tell eric about. The story went like this she went into hospital to have the surgery and was given oral cipro and developed what they thought was Clostridia difficile toxin(C diff)from the cipro, since this is life threatening in they go with vanco and possably other IV's at the 'serious end of infection eradication' and she was cured of her fibro after 20 years. She forgot to mention the serious IV therapy and thought it was all about removing the endo that did the trick it was my persistence in questioning that got all these facts.( I just couldn't see cured without therapy)So removing a major source of the infection and IV antibiotics were at the heart of curing this woman, she also sent me all her path reports and there was no sign of C diff toxin, so the therapy was targeting unknown gram positives. > > > > > He took VERY high dose abx, and he's well. I know others like him, > > > went into the hospital, contracted staph which almost killed them > > but > > > were saved from death by high, high dose i.v. abx, and waht do yo > > > know, they walked out of the hospital with their FMS/CFS cured. > > > > I'd definitely read closely if you have the energy to tell us about > > each of these people, their hx of illness, their labs at various > > times, what tx they did prior to hospitalization, the drug regimes > > they took in the hospital, whether they are now able to do heavy > > exercise, how long theyve been cured, etc etc - in short everything > > remotely relevant. And whether you know others with a similar > > trajectory who *didnt* get cured. I know some others on here would > pay > > close attention too. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2005 Report Share Posted August 23, 2005 Penny The drugs can help, it's the CURED END that we chase, Using sensitivities and right dosage often can get a 'cured', but having foci of infections needing surgery and in hard to reach places makes it a different ball game. > > Dr Bill Harvey & his wife took/taking high dose IV drugs [abx] Bill > is not > > doing too bad but is still not cured ..I believe his wife has not > responded > > so well and is still virtually bed ridden .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2005 Report Share Posted August 23, 2005 Only problem with this proposed story behind her " cure " is that C. diff is treated with ORAL vanco which does not go past the gut. IV vanco DOES NOT penetrate the gut and thus is NEVER used for C. diff. > > > > > > > He took VERY high dose abx, and he's well. I know others like > him, > > > > went into the hospital, contracted staph which almost killed > them > > > but > > > > were saved from death by high, high dose i.v. abx, and waht do > yo > > > > know, they walked out of the hospital with their FMS/CFS > cured. > > > > > > I'd definitely read closely if you have the energy to tell us > about > > > each of these people, their hx of illness, their labs at various > > > times, what tx they did prior to hospitalization, the drug > regimes > > > they took in the hospital, whether they are now able to do heavy > > > exercise, how long theyve been cured, etc etc - in short > everything > > > remotely relevant. And whether you know others with a similar > > > trajectory who *didnt* get cured. I know some others on here > would > > pay > > > close attention too. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2005 Report Share Posted August 23, 2005 Oral vanco? I'd like to try that but no one seems to use it around here. I don't recall whether she had C.diff. I do recall very clearly that she contracted a nasty infection while in the hospital and went on i.v. vanco. And she walked out of there " cured " of FMS. Can't remember her name right now but I remember that she was worried that she could relapse so was keeping an eye on the forums. She'd never made the connection to infection (thought the whole thing was due to fibroid removal) and was immensely grateful to have made the connection, as all kinds of things began to fit together. I remember she was skiing again after 20 years of FMS misery. penny > Only problem with this proposed story behind her " cure " is that C. diff is treated with > ORAL vanco which does not go past the gut. IV vanco DOES NOT penetrate the gut > and thus is NEVER used for C. diff. > Quote Link to comment Share on other sites More sharing options...
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