Guest guest Posted June 2, 2006 Report Share Posted June 2, 2006 Nelly, did you avoid abx before? What made you choose this combo? Are you getting any fungal issues? Thanx and glad to hear of the improvement. > > > > Mel, > > > > Yes, Lariam can have some neuropsychiatric side effects, but in my > experience the neuropsych effects I had from lariam was no worse (in > fact milder) than the effects I had when taking atovaquone (Mepron in > the US) which is another anti-protozoan that people with Babesia take. > I took the atovaquone first when my infectious load was probably > heavier, I took the Lariam after nearly 2 years of atovaquone and got > psycho again (crying a lot and screaming at everybody mainly). I also > got some amazing headaches, but I got ALL of the symptoms a) before > treatment, b)with all anti-protozoan treatments (including doxy and > artemisinin), c) they disappeared without discontinuation of the > treatments. In fact the only thing i was never able to tolerate was > the artemisinin. > > > > My hunch is that it's the bugs that cause the reaction when attacked > and dying, rather than just a pure toxic/adverse reaction to the drug. > Of course I have no proof of this, just my experience (my long > experience!). > > > > I think a certain % of people who think they are healthy and who > take Lariam as malarial prophylaxy are in fact harbouring bugs in > their brains (walled off toxoplasmosis comes to mind for eg) and these > bugs get disturbed by anti-malarial treatment, hence the % of people > who go bananas on Lariam. BTW, the neuropsych effects are much easier > to tolerate if you (think) you know what is going on, and if people > around you know what to expect and if they don't agravate you, > otherwise grrrrrrrrrrrr!! ) > > > > Nelly > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2006 Report Share Posted June 2, 2006 Sick nine years, still have positive urine antigen from dead borrelia just killed that week with Zithromax - looks like borrelia is the active, living, ongoing cause of my cfs. Husband and one son also test positive with the same test. Looks like we all have tertiary borrelia. I don't know how much more evidence we need for our three cases. Now if they would just do a study with the SAME tests on all cfs and fms patients we might have some documentation that cfs and fms are CAUSED AND PERPETUATED BY INFECTION. a Carnes > > The fact that an infection was a trigger does not mean that the > infection remains a factor. Some refer to these infections as > possibly being 'hit and run' infections, meaning that they 'trigger' > the metabolic and immune problems which are thereafter able to > sustain themselves (as in Rich's theories about the metabolic vicious > circle of being unable to maintain glutathione at healthy levels) > after the causative pathogen is no longer there or, even if there, > treatment of the pathogen would not break the vicious circle. > > >Actually, there's a well-supported suspicion among researchers, > >doctors, and a lot of us here, that CFS is indeed triggered by one or > >more out of a wide range of possible infectious agents. In our case > >-- perhaps because of genetic predispostion, or environmental > >factors, or disrupted methylation, or (name your pet theory -- there > >are a lot of likely candidates) -- our bodies decide to respond to > >these infections by spiraling into the cascade of symptoms we now > >know as CFS. > > > >In other words: there are many different infections that offer entry > >points to the illness -- but, in the end, all of them create a > >disease process that ultimately leads to the same syndrome. (That's > >why they still haven't found a single causative agent after 25 years. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2006 Report Share Posted June 2, 2006 Right, I'm with you a. I don't believe there is such a thing as a hit and run infection, for all kinds of reasons we've discussed before. Get rid of the troubling pathogen and the body will recover. The question is why/how borrelia persists and what can be added to treatment to get rid of it in all forms for good. Or put it into latency for good. > > > > The fact that an infection was a trigger does not mean that the > > infection remains a factor. Some refer to these infections as > > possibly being 'hit and run' infections, meaning that > they 'trigger' > > the metabolic and immune problems which are thereafter able to > > sustain themselves (as in Rich's theories about the metabolic > vicious > > circle of being unable to maintain glutathione at healthy levels) > > after the causative pathogen is no longer there or, even if there, > > treatment of the pathogen would not break the vicious circle. > > > > >Actually, there's a well-supported suspicion among researchers, > > >doctors, and a lot of us here, that CFS is indeed triggered by one > or > > >more out of a wide range of possible infectious agents. In our case > > >-- perhaps because of genetic predispostion, or environmental > > >factors, or disrupted methylation, or (name your pet theory -- > there > > >are a lot of likely candidates) -- our bodies decide to respond to > > >these infections by spiraling into the cascade of symptoms we now > > >know as CFS. > > > > > >In other words: there are many different infections that offer > entry > > >points to the illness -- but, in the end, all of them create a > > >disease process that ultimately leads to the same syndrome. (That's > > >why they still haven't found a single causative agent after 25 > years. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2006 Report Share Posted June 3, 2006 I'm sorry, Kathy, to upset you. But believe me, your frustration is also my frustration, and the fact that no one pays much attention, until someone throws a fit, really puts me over the top. The reaction to posts such as mine is almost always denial, anger, or complete avoidance, etc. I feel like I'm dealing with my doctors, not other patients who you'd think would want to be looking at everything and forcing accountability from our docs. There's a huge amount of denial going on here and until we start facing up to serious issues, we're just not going to get better as a group. I get a ton of emails off list. It's exhausting, but I usually provide the few doctors I'm capable of providing. If I didn't give you an answer, it's not because I didn't want to. I don't recall the nature of your specific question. penny " This used to be routine, until money became more > important than > > patients. Now the only patients that get this care > > routinely are > > pets and farm animals. " > > I have often wished that I could be my daughter's dog. Many > of us are doing the best we can. In many cases you are > preaching to the choir. > > I cannot get any testing where I live. I no longer bring my > doctors research painstakingly put together. They ignore it > or get angry. After 16 years of this kind of treatment, > what would you recommend I do? I'm listening, both ears > wide open. > > I keep trying supplements but usually I'm unable to tolerate > them. You caught me on a rough morning and your post put me > over the top. > > Kathy J. F. > > > ----- Original Message ----- > From: " penny " <pennyhoule@...> > > > > >I find it disturbing that almost everyone still believes > >that > > infections are " secondary " to our illness. > > > > It's like saying the disease TB is secondary to people's > > weak immune > > systems. > > > > I'm accused of being vocal. But that's because it's hard > > to get > > people to listen. (and I wish those who do listen would > > post here, > > rather than writing me privately). > > > > I'm also very disturbed by people claiming that " there are > > too many > > infections to test for " . This is not only lazy, > > misleading, > > irritating and wrong, it's also, I believe, a great > > disservice to > > patients and can lead to great harm. The fact is, we don't > > routinely > > get tested for ANY infections. Especially the simple yet > > obvious > > (and cheap) ones like Staph, strep and pseudomonas. > > > > I know several microbiologists who can tell you exactly > > how easy it > > is to test and identify organisms. First you put the > > sample in the > > petri dish and watch to see what grows profusely. You'll > > be able to > > identify the culprit from that. No special techniques > > needed. Then > > you put some antimicrobial discs in the dish, and see > > which ones > > push the growth back. Then you treat with said > > antimicrobials, then > > you retest, adjust the drug and retreat until ALL > > organisms and > > symptoms are gone. Then, if symptoms are not completely > > gone, you > > can dig for stealthier organisms, but I bet you'll be > > surprised at > > how infrequently that will be necessary. > > > > This used to be routine, until money became more important > > than > > patients. Now the only patients that get this care > > routinely are > > pets and farm animals. > > > > penny > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2006 Report Share Posted June 3, 2006 Ive used alot more than Glutathione to help my illness ie lactoferrin etc... that Ive had over 16 years.I still think that Glutathione has been the most important factor in my recovery! I have a feeling those who have had CFS for long periods of time may do better via glutathione model. I believe that the autism protocols use a combination of many nutrtionals including anti-infectives and they all use glutathione building as a base. I have some much to thank Rich for in all the advice he has given and im sure we all share that view - because it actually works for some! This is what Ive done : First phase is to address normalisation : 1) Raising glutathione - Whey Protein 2) Killing infections - Lactoferrin / Coconut oil / Manuka honey 3) Improving adrenals - Salt / licorice 4) Improving digestion - Digestive enzymes / Probiotics 5) Rebalancing phase1 detox with phase 2 detox - Turmeric/ Grapefruit Juice / Rosemary 6) Increasing anti oxidants - OPC's - cocoa / teas / berries Second phase is to address deep CFS issues : 7) deep metals - Coriander leaf 8) absorb toxins - Chlorella 9) deep infections - Olive leaf / Garlic / Grapefruit seed Extract 10) heal leaky gut - Colostrum Regards CS Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2006 Report Share Posted June 3, 2006 Edy, you are one of the lucky ones if you've got a cooperative doc. If it were me, I'd find out if he's got a good reliable lab, then ask him to do nasal swabs (or swab other areas where you feel you might get a good bacterial sample) and send them to the lab with the instructions " deep wound " and " Culture and report ALL growths " " do not dismiss 'normal' flora " . This will be a great starting place. You can see which bugs grow most profusely and which drugs they're resistant to. If you do this frequently, you can start getting these bugs under control, and you may see other ones pop up. Fungal is probably a big factor for you as well. This constant monitoring of your organisms can really help you and it's very possible that if you get THESE organisms (that are so extremely resilient), under control, that you will also be able to get any other, less easy to detect organisms under control as well. The key is getting a lab to follow your doc's instructions to not throw stuff out as " normal " or " contamination " . The " deep wound " instruction (according to a microbiologist friend at UCSD) will often accomplish this. penny > > > > I do find it disturbing that some people are implying that > treatment > > of infections is the final goal of treatment for CFS, both > necessary > > and sufficient for a cure. We will from time to time have > infections, > > just like non-PWCs. We may even be predisposed to or more > susceptible > > to certain infections because of our CFS. and infections may cause > > further matabolic or other problems and symptoms some of twhich > may > > oerlap with what are usually thought of a 'CFS' symptoms. But > > treatment of the infections is pretty much just like treatment for > > any other confounding, secondary or residual condition. We will > still > > have CFS (and the continuing susceptibility to more infections > > possibly) when we are through with that. If we didn't, we wouldn't > be > > considered people with CFS in the first place. > > > > > > > > > > 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 June 3, 2006 Report Share Posted June 3, 2006 Hi Penny, Thanks so much for responding. My doc is mainly an LLMD tho I think she's very open and intellegent. She is very much on this Lyme and has already cleared borellia and babesia with ABX, now we're going after the Lyme itself. I had a mold panal done(blood) and am loaded with the stuff. I also have a home hyperbaric chamber which I use for an hour a day and she thinks this will be very helpful for candida, which I'm off the chart with and other bacteria. Molds I hear are not succeptible to HBOT. That's a good jumping off point suggestion, tho I have to admit I'm not exactly sure what you mean about the swabbing, but have printed your post and will show it to her. I've never swab tested, just blood. I know the lab the office uses is the best so no problem there. Usually it's Doctor's Data or Great Smokies. Sometimes others. All good. I'm sure fungal is huge and I use a neti pot everyday to keep my sinuses from going too crazy with the stuff. I think there's a genetic component as my daughter has mold and yeast issues as well. If you can think of anything else please feel free to let me know. I really appreciate it. Maybe because I'm in California and near San Francisco I'm lucky to find good docs, eh? All the best, Edy penny <pennyhoule@...> wrote: Edy, you are one of the lucky ones if you've got a cooperative doc. If it were me, I'd find out if he's got a good reliable lab, then ask him to do nasal swabs (or swab other areas where you feel you might get a good bacterial sample) and send them to the lab with the instructions " deep wound " and " Culture and report ALL growths " " do not dismiss 'normal' flora " . This will be a great starting place. You can see which bugs grow most profusely and which drugs they're resistant to. If you do this frequently, you can start getting these bugs under control, and you may see other ones pop up. Fungal is probably a big factor for you as well. This constant monitoring of your organisms can really help you and it's very possible that if you get THESE organisms (that are so extremely resilient), under control, that you will also be able to get any other, less easy to detect organisms under control as well. The key is getting a lab to follow your doc's instructions to not throw stuff out as " normal " or " contamination " . The " deep wound " instruction (according to a microbiologist friend at UCSD) will often accomplish this. penny > > > > I do find it disturbing that some people are implying that > treatment > > of infections is the final goal of treatment for CFS, both > necessary > > and sufficient for a cure. We will from time to time have > infections, > > just like non-PWCs. We may even be predisposed to or more > susceptible > > to certain infections because of our CFS. and infections may cause > > further matabolic or other problems and symptoms some of twhich > may > > oerlap with what are usually thought of a 'CFS' symptoms. But > > treatment of the infections is pretty much just like treatment for > > any other confounding, secondary or residual condition. We will > still > > have CFS (and the continuing susceptibility to more infections > > possibly) when we are through with that. If we didn't, we wouldn't > be > > considered people with CFS in the first place. > > > > > > > > > > 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 June 3, 2006 Report Share Posted June 3, 2006 Hi Penny, I am honestly afraid to speak to you again, since our last conversation ended in your expression of hatred and vitriol in a private e-mail against me; Seemingly you did this because you apparently completely misunderstood my personal feelings and motivations; and you would not hear me when I protested my innocence that I was not arguing against your wider beliefs and principles in the slightest. I may be foolish, but I am going to try to go again where angels fear to tread, nevertheless. Perhaps ocassionally, what you are interpreting as avoidance or denial of your subject matter; may actually be a quite natural avoidance of your aggressiveness, but I can only speak for my own feelings, I can't speak about others reactions to this aspect of your posts, obviously. I gather that you feel you are going totally unheard, but trust me, it would be very difficult for anyone not to hear you. I know you will likely take that as a huge personal criticism again, but it not intended as such, in fact it is a totally unbiased observational remark; you should take it as a compliment since I gather your desire is to be heard. When you have received no reply to your posts on this forum, have you considered that it may just as likely be a silence of complete agreement and assent rather than one of avoidance and denial, in many cases? why do you always assume the very worst? Has it occurred to you that maybe your message is getting through loud and clear by now on this forum, and we have all heard what you have to say and taken your information on board long ago? Having heard your views, what would be the need for further discussion? Your evident frustration is always the most striking thing about your posts, so I was wondering, when it was (apart from of course) that so many people have responded to your posts with so much anger and denial, and on what forums this is still happening to you now? my very best wishes " This used to be routine, until money became more > > important than > > > patients. Now the only patients that get this care > > > routinely are > > > pets and farm animals. " > > > > I have often wished that I could be my daughter's dog. Many > > of us are doing the best we can. In many cases you are > > preaching to the choir. > > > > I cannot get any testing where I live. I no longer bring my > > doctors research painstakingly put together. They ignore it > > or get angry. After 16 years of this kind of treatment, > > what would you recommend I do? I'm listening, both ears > > wide open. > > > > I keep trying supplements but usually I'm unable to tolerate > > them. You caught me on a rough morning and your post put me > > over the top. > > > > Kathy J. F. > > > > > > ----- Original Message ----- > > From: " penny " <pennyhoule@> > > > > > > > > >I find it disturbing that almost everyone still believes > > >that > > > infections are " secondary " to our illness. > > > > > > It's like saying the disease TB is secondary to people's > > > weak immune > > > systems. > > > > > > I'm accused of being vocal. But that's because it's hard > > > to get > > > people to listen. (and I wish those who do listen would > > > post here, > > > rather than writing me privately). > > > > > > I'm also very disturbed by people claiming that " there are > > > too many > > > infections to test for " . This is not only lazy, > > > misleading, > > > irritating and wrong, it's also, I believe, a great > > > disservice to > > > patients and can lead to great harm. The fact is, we don't > > > routinely > > > get tested for ANY infections. Especially the simple yet > > > obvious > > > (and cheap) ones like Staph, strep and pseudomonas. > > > > > > I know several microbiologists who can tell you exactly > > > how easy it > > > is to test and identify organisms. First you put the > > > sample in the > > > petri dish and watch to see what grows profusely. You'll > > > be able to > > > identify the culprit from that. No special techniques > > > needed. Then > > > you put some antimicrobial discs in the dish, and see > > > which ones > > > push the growth back. Then you treat with said > > > antimicrobials, then > > > you retest, adjust the drug and retreat until ALL > > > organisms and > > > symptoms are gone. Then, if symptoms are not completely > > > gone, you > > > can dig for stealthier organisms, but I bet you'll be > > > surprised at > > > how infrequently that will be necessary. > > > > > > This used to be routine, until money became more important > > > than > > > patients. Now the only patients that get this care > > > routinely are > > > pets and farm animals. > > > > > > penny > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2006 Report Share Posted June 3, 2006 Mel, if you back channel me with the name of your doc (IF he's willing to handle more patients) I'll file it for future private requests for a decent doc in your neck of the woods. We've somehow got to start finding a network of docs that will treat as yours does, so that we can start establishing some credibilty with the public and the rest of the medical community. penny " This used to be routine, until money became more > important than > > patients. Now the only patients that get this care > > routinely are > > pets and farm animals. " > > I have often wished that I could be my daughter's dog. Many > of us are doing the best we can. In many cases you are > preaching to the choir. > > I cannot get any testing where I live. I no longer bring my > doctors research painstakingly put together. They ignore it > or get angry. After 16 years of this kind of treatment, > what would you recommend I do? I'm listening, both ears > wide open. > > I keep trying supplements but usually I'm unable to tolerate > them. You caught me on a rough morning and your post put me > over the top. > > Kathy J. F. > > > ----- Original Message ----- > From: " penny " <pennyhoule@...> > > > > >I find it disturbing that almost everyone still believes > >that > > infections are " secondary " to our illness. > > > > It's like saying the disease TB is secondary to people's > > weak immune > > systems. > > > > I'm accused of being vocal. But that's because it's hard > > to get > > people to listen. (and I wish those who do listen would > > post here, > > rather than writing me privately). > > > > I'm also very disturbed by people claiming that " there are > > too many > > infections to test for " . This is not only lazy, > > misleading, > > irritating and wrong, it's also, I believe, a great > > disservice to > > patients and can lead to great harm. The fact is, we don't > > routinely > > get tested for ANY infections. Especially the simple yet > > obvious > > (and cheap) ones like Staph, strep and pseudomonas. > > > > I know several microbiologists who can tell you exactly > > how easy it > > is to test and identify organisms. First you put the > > sample in the > > petri dish and watch to see what grows profusely. You'll > > be able to > > identify the culprit from that. No special techniques > > needed. Then > > you put some antimicrobial discs in the dish, and see > > which ones > > push the growth back. Then you treat with said > > antimicrobials, then > > you retest, adjust the drug and retreat until ALL > > organisms and > > symptoms are gone. Then, if symptoms are not completely > > gone, you > > can dig for stealthier organisms, but I bet you'll be > > surprised at > > how infrequently that will be necessary. > > > > This used to be routine, until money became more important > > than > > patients. Now the only patients that get this care > > routinely are > > pets and farm animals. > > > > penny > > > > > > 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 June 3, 2006 Report Share Posted June 3, 2006 I'm not Trina, but a wastebasket dx means they can't identify the cuase, so they compile a bunch of symptoms and call it a " syndrome " . Unfortunately, people start believing the " syndrome " is actually the illness, and forget about trying to find the cause. penny > > Hi Trina, > > what does " a wastebasket diagnosis " mean? > > Is it the same thing as a cover-up and a whitewash? > > best wishes > yvonne > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2006 Report Share Posted June 3, 2006 Great post, Sara. I concur. We need to get as many people as possible to start investigating this, sooner rather than later, if we have a chance of learning how to win against these organisms. penny > > Under this model, tracking down the causal infection(s) and > addressing it (them) as directly as may be possible does become a > central piece of recovering health. If it turns out to be something > that can be treated, and we treat it, we're cutting the core problem > off at the knees and giving our bodies the best chance of recovery. > > It's a good working theory with some credible science and a lot of > patient experience behind it. That's why so many people here are so > focused on testing for and finding effective treatments for the core > group. It's also why all the top-of-the-line CFS doctors in the world > just automatically test for about a dozen of the most likely > candidates (mycplasmas, CMV, Lyme, HHV-6, etc. etc.) on the first > visit to their offices. Their own clinical experience, along with the > research, have taught them that these infections play an important -- > and possibly causative -- role; and identifying and resolving them > (if possible) can create dramatic improvement in a very short time. > > It's one of the two or three best theories we have about how to pull > this thing out at the roots. > > Sara > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2006 Report Share Posted June 3, 2006 Who do you know who's actually done this? The only people I know who've cultured frequently and treated based on those cultures are the only people (or animals) I know who are 100% well. I don't know of anything that works without first addressing the basics. There's a lot of known science on the most basic and most destructive of organisms, and yet it's quite apparent that almost no one here knows anything about THOSE! penny > > This is so oversimplified - do you take blood, muscle, brain, other > nerves, muscle, blood, what? And what about viruses and prions and > mycoplasms and other 'infectives' that don't 'grow' on a petri dish? > And what about the millions of bacteria (if you want to limit > yourself to bacteria) that normal people live in peaceful harmony > with - are you going to kill off anything that grown in you? That > would certainly be a mistake, not only wasting money and bacterial > resistance on bacteria that are not causing your illness, but even > killing ones your body may rely on to make vitamin K or who knows > what else (and I'm not being facetious; science does not know what > benefits a lot of our coexisting bacteria may have). And fungi? > > I've been ill longer than most of you, I dare say, I'm highly > educated and I have read more than average in my own quest to become > well. This is my opinion, and my opinion is that you can test 'til > you are 100 and take all the antibiotics made by man or nature and > many of us, if not you personally, will still have CFS. > > > >No special techniques needed. Then > > you put some antimicrobial discs in the dish, and see which ones > > push the growth back. Then you treat with said antimicrobials, then > > you retest, adjust the drug and retreat until ALL organisms and > > symptoms are gone. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2006 Report Share Posted June 3, 2006 Hi and Penny, I agree . What is the point of going on and on about the idea that Infections are HUGE with CFS. Yes Yes . . . I believe most of us know that. Can we get on to something else, please. This just does not seem to be constructive any longer . . I feel like the posts are just a few peoples frustrations that they just can't let go of their " point " . Thanks and best wishes, Sue T <simplicity46@...> wrote: Hi Penny, I am honestly afraid to speak to you again, since our last conversation ended in your expression of hatred and vitriol in a private e-mail against me; Seemingly you did this because you apparently completely misunderstood my personal feelings and motivations; and you would not hear me when I protested my innocence that I was not arguing against your wider beliefs and principles in the slightest. I may be foolish, but I am going to try to go again where angels fear to tread, nevertheless. Perhaps ocassionally, what you are interpreting as avoidance or denial of your subject matter; may actually be a quite natural avoidance of your aggressiveness, but I can only speak for my own feelings, I can't speak about others reactions to this aspect of your posts, obviously. I gather that you feel you are going totally unheard, but trust me, it would be very difficult for anyone not to hear you. I know you will likely take that as a huge personal criticism again, but it not intended as such, in fact it is a totally unbiased observational remark; you should take it as a compliment since I gather your desire is to be heard. When you have received no reply to your posts on this forum, have you considered that it may just as likely be a silence of complete agreement and assent rather than one of avoidance and denial, in many cases? why do you always assume the very worst? Has it occurred to you that maybe your message is getting through loud and clear by now on this forum, and we have all heard what you have to say and taken your information on board long ago? Having heard your views, what would be the need for further discussion? Your evident frustration is always the most striking thing about your posts, so I was wondering, when it was (apart from of course) that so many people have responded to your posts with so much anger and denial, and on what forums this is still happening to you now? my very best wishes " This used to be routine, until money became more > > important than > > > patients. Now the only patients that get this care > > > routinely are > > > pets and farm animals. " > > > > I have often wished that I could be my daughter's dog. Many > > of us are doing the best we can. In many cases you are > > preaching to the choir. > > > > I cannot get any testing where I live. I no longer bring my > > doctors research painstakingly put together. They ignore it > > or get angry. After 16 years of this kind of treatment, > > what would you recommend I do? I'm listening, both ears > > wide open. > > > > I keep trying supplements but usually I'm unable to tolerate > > them. You caught me on a rough morning and your post put me > > over the top. > > > > Kathy J. F. > > > > > > ----- Original Message ----- > > From: " penny " <pennyhoule@> > > > > > > > > >I find it disturbing that almost everyone still believes > > >that > > > infections are " secondary " to our illness. > > > > > > It's like saying the disease TB is secondary to people's > > > weak immune > > > systems. > > > > > > I'm accused of being vocal. But that's because it's hard > > > to get > > > people to listen. (and I wish those who do listen would > > > post here, > > > rather than writing me privately). > > > > > > I'm also very disturbed by people claiming that " there are > > > too many > > > infections to test for " . This is not only lazy, > > > misleading, > > > irritating and wrong, it's also, I believe, a great > > > disservice to > > > patients and can lead to great harm. The fact is, we don't > > > routinely > > > get tested for ANY infections. Especially the simple yet > > > obvious > > > (and cheap) ones like Staph, strep and pseudomonas. > > > > > > I know several microbiologists who can tell you exactly > > > how easy it > > > is to test and identify organisms. First you put the > > > sample in the > > > petri dish and watch to see what grows profusely. You'll > > > be able to > > > identify the culprit from that. No special techniques > > > needed. Then > > > you put some antimicrobial discs in the dish, and see > > > which ones > > > push the growth back. Then you treat with said > > > antimicrobials, then > > > you retest, adjust the drug and retreat until ALL > > > organisms and > > > symptoms are gone. Then, if symptoms are not completely > > > gone, you > > > can dig for stealthier organisms, but I bet you'll be > > > surprised at > > > how infrequently that will be necessary. > > > > > > This used to be routine, until money became more important > > > than > > > patients. Now the only patients that get this care > > > routinely are > > > pets and farm animals. > > > > > > penny > > > > > > 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 June 3, 2006 Report Share Posted June 3, 2006 What IS CFS? It's nothing more than a title for a conglomeration of symptoms (all of which can also be categorized under basic infections). Lets be real. CFS is NOT widely recognized as a " real " disease in and of itself with an identified cause and course of treatment. So to say that we've got infections PLUS CFS??? What is CFS again? I'd really like to see ANY studies you have using proper antibiotic/antifungal treatments in CFS that show zero results. I don't know of any. penny > > Of course I have encountered the idea of underlying infections. I am trying to help people by noting that there is a researched and > anecdotal view that testing and treating for infections is -not- > ultimately going to cure your CFS. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2006 Report Share Posted June 3, 2006 Hi Penny, I've said this before, but I think something has gone haywire with our systems due to environmental factors, maybe genetics or something else. I don't think in a world that strives for homeostasis that being knocked down by this many infections and bug overloads is the norm for a body. Bodies have all kinds of mechanisms to prevent such things and ours don't work. But I wholeheartedly agree that if getting the bugs out helps ones quality of life then of course start there. It's easier than trying to figure out why our systems are falling down on the job. And it's easier than trying to replace genes that don't work. I am, for instance, completely missing a gene that detoxes. It's not there so no message gets sent to get rid of bad stuff like metals, toxins, etc. This is all very complicated and to have the means to artificially rid ourselves of these invaders is a good first step. Only my opinion and worth what you've paid for it!! penny <pennyhoule@...> wrote: What IS CFS? It's nothing more than a title for a conglomeration of symptoms (all of which can also be categorized under basic infections). Lets be real. CFS is NOT widely recognized as a " real " disease in and of itself with an identified cause and course of treatment. So to say that we've got infections PLUS CFS??? What is CFS again? I'd really like to see ANY studies you have using proper antibiotic/antifungal treatments in CFS that show zero results. I don't know of any. penny > > Of course I have encountered the idea of underlying infections. I am trying to help people by noting that there is a researched and > anecdotal view that testing and treating for infections is -not- > ultimately going to cure your CFS. 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 June 3, 2006 Report Share Posted June 3, 2006 Oh I did want to add one more thing. It's also a little like the way an animal can be overwhelmed and outright die from a flea overload. A few fleas hey no biggie, but enough of them and anemia and death. Same with the bugs we've got. Too many and too many kinds. In other words.....infected. And affected. penny <pennyhoule@...> wrote: What IS CFS? It's nothing more than a title for a conglomeration of symptoms (all of which can also be categorized under basic infections). Lets be real. CFS is NOT widely recognized as a " real " disease in and of itself with an identified cause and course of treatment. So to say that we've got infections PLUS CFS??? What is CFS again? I'd really like to see ANY studies you have using proper antibiotic/antifungal treatments in CFS that show zero results. I don't know of any. penny > > Of course I have encountered the idea of underlying infections. I am trying to help people by noting that there is a researched and > anecdotal view that testing and treating for infections is -not- > ultimately going to cure your CFS. 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 June 3, 2006 Report Share Posted June 3, 2006 orry it's bothering you. Now you know how I feel when reading the same posts for years on immune deficiencies, nutritional supplementation like whey protein, and the latest, pages and pages and pages on glutathione. And respectfully, my whole point is people don't KNOW what they think they know when it comes to infections. Otherwise you'd all be freaking out. penny " This used to be routine, until money became more > > > important than > > > > patients. Now the only patients that get this care > > > > routinely are > > > > pets and farm animals. " > > > > > > I have often wished that I could be my daughter's dog. Many > > > of us are doing the best we can. In many cases you are > > > preaching to the choir. > > > > > > I cannot get any testing where I live. I no longer bring my > > > doctors research painstakingly put together. They ignore it > > > or get angry. After 16 years of this kind of treatment, > > > what would you recommend I do? I'm listening, both ears > > > wide open. > > > > > > I keep trying supplements but usually I'm unable to tolerate > > > them. You caught me on a rough morning and your post put me > > > over the top. > > > > > > Kathy J. F. > > > > > > > > > ----- Original Message ----- > > > From: " penny " <pennyhoule@> > > > > > > > > > > > > >I find it disturbing that almost everyone still believes > > > >that > > > > infections are " secondary " to our illness. > > > > > > > > It's like saying the disease TB is secondary to people's > > > > weak immune > > > > systems. > > > > > > > > I'm accused of being vocal. But that's because it's hard > > > > to get > > > > people to listen. (and I wish those who do listen would > > > > post here, > > > > rather than writing me privately). > > > > > > > > I'm also very disturbed by people claiming that " there are > > > > too many > > > > infections to test for " . This is not only lazy, > > > > misleading, > > > > irritating and wrong, it's also, I believe, a great > > > > disservice to > > > > patients and can lead to great harm. The fact is, we don't > > > > routinely > > > > get tested for ANY infections. Especially the simple yet > > > > obvious > > > > (and cheap) ones like Staph, strep and pseudomonas. > > > > > > > > I know several microbiologists who can tell you exactly > > > > how easy it > > > > is to test and identify organisms. First you put the > > > > sample in the > > > > petri dish and watch to see what grows profusely. You'll > > > > be able to > > > > identify the culprit from that. No special techniques > > > > needed. Then > > > > you put some antimicrobial discs in the dish, and see > > > > which ones > > > > push the growth back. Then you treat with said > > > > antimicrobials, then > > > > you retest, adjust the drug and retreat until ALL > > > > organisms and > > > > symptoms are gone. Then, if symptoms are not completely > > > > gone, you > > > > can dig for stealthier organisms, but I bet you'll be > > > > surprised at > > > > how infrequently that will be necessary. > > > > > > > > This used to be routine, until money became more important > > > > than > > > > patients. Now the only patients that get this care > > > > routinely are > > > > pets and farm animals. > > > > > > > > penny > > > > > > > > > > > > > > > > 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 June 3, 2006 Report Share Posted June 3, 2006 These are no longer " normal " bugs. Bacteria. and especially the super bugs we've created are much better at adapting than we are. So until we recognize what we're dealing with, tinkering with our immune systems is going to be a drop in the bucket. I'm all for discovering genetic predispositions, but not at the expense of identifying and learning how to cope with the infections. penny > > > > > Of course I have encountered the idea of underlying infections. I > am trying to help people by noting that there is a researched and > > anecdotal view that testing and treating for infections is -not- > > ultimately going to cure your CFS. > > > > > > > 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 June 3, 2006 Report Share Posted June 3, 2006 Hi Penny, I know that it gets old reading about the same " old stuff " , thats why I am following Dr. Yasko and improving . . . getting my genetics figured out first. Sue T penny <pennyhoule@...> wrote: orry it's bothering you. Now you know how I feel when reading the same posts for years on immune deficiencies, nutritional supplementation like whey protein, and the latest, pages and pages and pages on glutathione. And respectfully, my whole point is people don't KNOW what they think they know when it comes to infections. Otherwise you'd all be freaking out. penny " This used to be routine, until money became more > > > important than > > > > patients. Now the only patients that get this care > > > > routinely are > > > > pets and farm animals. " > > > > > > I have often wished that I could be my daughter's dog. Many > > > of us are doing the best we can. In many cases you are > > > preaching to the choir. > > > > > > I cannot get any testing where I live. I no longer bring my > > > doctors research painstakingly put together. They ignore it > > > or get angry. After 16 years of this kind of treatment, > > > what would you recommend I do? I'm listening, both ears > > > wide open. > > > > > > I keep trying supplements but usually I'm unable to tolerate > > > them. You caught me on a rough morning and your post put me > > > over the top. > > > > > > Kathy J. F. > > > > > > > > > ----- Original Message ----- > > > From: " penny " <pennyhoule@> > > > > > > > > > > > > >I find it disturbing that almost everyone still believes > > > >that > > > > infections are " secondary " to our illness. > > > > > > > > It's like saying the disease TB is secondary to people's > > > > weak immune > > > > systems. > > > > > > > > I'm accused of being vocal. But that's because it's hard > > > > to get > > > > people to listen. (and I wish those who do listen would > > > > post here, > > > > rather than writing me privately). > > > > > > > > I'm also very disturbed by people claiming that " there are > > > > too many > > > > infections to test for " . This is not only lazy, > > > > misleading, > > > > irritating and wrong, it's also, I believe, a great > > > > disservice to > > > > patients and can lead to great harm. The fact is, we don't > > > > routinely > > > > get tested for ANY infections. Especially the simple yet > > > > obvious > > > > (and cheap) ones like Staph, strep and pseudomonas. > > > > > > > > I know several microbiologists who can tell you exactly > > > > how easy it > > > > is to test and identify organisms. First you put the > > > > sample in the > > > > petri dish and watch to see what grows profusely. You'll > > > > be able to > > > > identify the culprit from that. No special techniques > > > > needed. Then > > > > you put some antimicrobial discs in the dish, and see > > > > which ones > > > > push the growth back. Then you treat with said > > > > antimicrobials, then > > > > you retest, adjust the drug and retreat until ALL > > > > organisms and > > > > symptoms are gone. Then, if symptoms are not completely > > > > gone, you > > > > can dig for stealthier organisms, but I bet you'll be > > > > surprised at > > > > how infrequently that will be necessary. > > > > > > > > This used to be routine, until money became more important > > > > than > > > > patients. Now the only patients that get this care > > > > routinely are > > > > pets and farm animals. > > > > > > > > penny > > > > > > > > > > > > > > > > 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 June 3, 2006 Report Share Posted June 3, 2006 " penny " <pennyhoule@...> wrote: What IS CFS? It's nothing more than a title for a conglomeration of symptoms (all of which can also be categorized under basic infections). Lets be real. CFS is NOT widely recognized as a " real " disease in and of itself with an identified cause and course of treatment. So to say that we've got infections PLUS CFS??? What is CFS again?< CFS is an emerging phenomenon consisting of a pattern of characteristic and concurrent signs and symptoms that distinguishes itself by occuring in a manner that should afflict no normal healthy person. Physicians who follow Dr Cheney and Dr s lead by recognizing that these concurrent symptoms have a distinctive pattern which calls for further testing go on to identify immunological abnormalities as a result of being aware that these complaint represent an abnormal condition that has been very publically described. Doctors who display skepticism in the face of obvious abnormalities tend to focus on the description and characteristics contained in the definition as BEING the illness, instead of an indication that a syndrome of unknown etiology is present - implying the need to determine the cause. This not substantially different to the way some physicians view PMS as a serious hormonal imbalance which directly causes emotional disturbance, while other doctors speak the same words, but view PMS as a hormonal excuse for feminine exaggerations and hypochondria. There is nothing in " CFS " that is inherently deficient in its intended function to call attention to a syndromic entity. The response to the CFS description is determined by the functional intent of the individual doctors. Denialist doctors began this game by blaming the patient. It is quite convenient for those of denialist mentality to shift the blame for their refusal to listen to the patients illness presentation upon the name " CFS " , and denigrate the distinct syndromic description as an incomprehensible and meaningless conglomeration of complaints which represent nothing. As bad as the name " CFS " is, it is still not so deficient that they should be allowed to get away with this. - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2006 Report Share Posted June 3, 2006 ditto penny <pennyhoule@...> wrote: These are no longer " normal " bugs. Bacteria. and especially the super bugs we've created are much better at adapting than we are. So until we recognize what we're dealing with, tinkering with our immune systems is going to be a drop in the bucket. I'm all for discovering genetic predispositions, but not at the expense of identifying and learning how to cope with the infections. penny > > > > > Of course I have encountered the idea of underlying infections. I > am trying to help people by noting that there is a researched and > > anecdotal view that testing and treating for infections is -not- > > ultimately going to cure your CFS. > > > > > > > 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 June 3, 2006 Report Share Posted June 3, 2006 Hi, Penny. I'm sorry that the discussion of glutathione depletion is tedious to you. For what it's worth, I certainly agree that people with CFS have infections. Probably most also have glutathione depletion. Which leads to which, or are they unrelated? It's not easy to establish the cause and effect sequence in the pathogenesis of CFS. Furthermore, there seems to be considerable heterogeneity in the population that meets the criteria for CFS, so the cause and effect sequence may not be the same for all. I don't disagree that in at least some cases it is important to directly target the infectious agents with well-chosen antimicrobials. I'm not convinced that this is true in all CFS cases. I also think that different people have widely different immune systems, probably largely because of their different genetic mak- ups. A pathogen that is not able to get a foothold in one person's body may produce a vigorous infection in another person's body. While the glutathione story may seem like the same ol' same ol', I think there is a radical difference in it now compared to say, a year ago. The difference is that we are now homing in on the vicious circles that have held glutathione down in so many PWCs, thanks to the progress in autism, which appears to have significant similarities to CFS. I think that there is in fact a revolution going on in our understanding of the root causes of CFS. I certainly do not deny the importance of identifying and combating infectious pathogens. However, unless the immune system is prepared to take over the battle, I think that this will be a never ending process, as the person becomes reinfected in the absence of effective immune defense. It is a fact that the immune system will not be able to perform properly if glutathione is depleted, or if the methylation/folate metabolism is blocked, as appears to be the case in many PWCs. So I see the two efforts as being complementary. One is offense, the other is defense. I think we need both to win the war against the pathogens. It is my hope that we will all more and more see these two aspects as both being significant parts of the solution to the overall problem. Best regards, Rich > > orry it's bothering you. Now you know how I feel when reading the > same posts for years on immune deficiencies, nutritional > supplementation like whey protein, and the latest, pages and pages > and pages on glutathione. > > And respectfully, my whole point is people don't KNOW what they > think they know when it comes to infections. Otherwise you'd all be > freaking out. > > penny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2006 Report Share Posted June 3, 2006 Rich, Very well said. rvankonynen <richvank@...> wrote: Hi, Penny. I'm sorry that the discussion of glutathione depletion is tedious to you. For what it's worth, I certainly agree that people with CFS have infections. Probably most also have glutathione depletion. Which leads to which, or are they unrelated? It's not easy to establish the cause and effect sequence in the pathogenesis of CFS. Furthermore, there seems to be considerable heterogeneity in the population that meets the criteria for CFS, so the cause and effect sequence may not be the same for all. I don't disagree that in at least some cases it is important to directly target the infectious agents with well-chosen antimicrobials. I'm not convinced that this is true in all CFS cases. I also think that different people have widely different immune systems, probably largely because of their different genetic mak- ups. A pathogen that is not able to get a foothold in one person's body may produce a vigorous infection in another person's body. While the glutathione story may seem like the same ol' same ol', I think there is a radical difference in it now compared to say, a year ago. The difference is that we are now homing in on the vicious circles that have held glutathione down in so many PWCs, thanks to the progress in autism, which appears to have significant similarities to CFS. I think that there is in fact a revolution going on in our understanding of the root causes of CFS. I certainly do not deny the importance of identifying and combating infectious pathogens. However, unless the immune system is prepared to take over the battle, I think that this will be a never ending process, as the person becomes reinfected in the absence of effective immune defense. It is a fact that the immune system will not be able to perform properly if glutathione is depleted, or if the methylation/folate metabolism is blocked, as appears to be the case in many PWCs. So I see the two efforts as being complementary. One is offense, the other is defense. I think we need both to win the war against the pathogens. It is my hope that we will all more and more see these two aspects as both being significant parts of the solution to the overall problem. Best regards, Rich > > orry it's bothering you. Now you know how I feel when reading the > same posts for years on immune deficiencies, nutritional > supplementation like whey protein, and the latest, pages and pages > and pages on glutathione. > > And respectfully, my whole point is people don't KNOW what they > think they know when it comes to infections. Otherwise you'd all be > freaking out. > > penny 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 June 3, 2006 Report Share Posted June 3, 2006 Beautifully said, Rich, and I hope the list can get back to positive suggestions and interactions, rather than venting. > > > > orry it's bothering you. Now you know how I feel when reading the > > same posts for years on immune deficiencies, nutritional > > supplementation like whey protein, and the latest, pages and pages > > and pages on glutathione. > > > > And respectfully, my whole point is people don't KNOW what they > > think they know when it comes to infections. Otherwise you'd all > be > > freaking out. > > > > penny > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2006 Report Share Posted June 3, 2006 I agree, many doors, same house. jill1313 <jenbooks13@...> wrote: Beautifully said, Rich, and I hope the list can get back to positive suggestions and interactions, rather than venting. > > > > orry it's bothering you. Now you know how I feel when reading the > > same posts for years on immune deficiencies, nutritional > > supplementation like whey protein, and the latest, pages and pages > > and pages on glutathione. > > > > And respectfully, my whole point is people don't KNOW what they > > think they know when it comes to infections. Otherwise you'd all > be > > freaking out. > > > > penny > 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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