Guest guest Posted June 9, 2005 Report Share Posted June 9, 2005 I am printing out your words right now and taking them to the doctor. Tony, you were the first to give me direction, I have often told others of your efforts on my behalf when so many docs turned me away. Know what I find absolutely CRAZY ??? Remember when you tested my swabs and you emailed me with a list of sensitivities and resisitence ? I took that list to the doctor and he prescribed antibiotics based upon your scribbles. Do you see the amazement here. They never would prescribe without tests upon tests before, yet they don't even try to call you but prescribe an antibiotic based upon an email from an aussie? It literally blew me away and certainly took away a bit of fear I had in them prior to that. Now I am pushier about asking for what I want. It doesn't work to try and finaese the antibiotics out of them. It is hard for me a polite southern girl to be pushy, but when my life and my son's life is at stake , I " m learning. I'm hesitant about the doctor that I'm working with that is willing to prescribe. I feel his office is non sterile. He does IV vitamins and I only had to have one IV vitamins treatment to know that he is not practicing sterile policy. The trash can was right next to the IV needle, and various other things. So I'm in a bit of a dilemma. I just won't get another IV treatment from him. No, I'm really not being fussy. It is a serious matter, I almost feel like doing an expose' but then he has helped me out sometimes. He told me that he has another patient " just like me " that the government is paying him whatever he wants for this soldier that just got back from the Gulf sick. He also has Central Sleep Apnea, i.e. brainstem leisons. He also spoke that the government is working on Asian pathogen that is expected to be epidemic killing more than one million americans. It is very hush , hush he said and he promised to tell me more next visit. Now this doctor is NOT a gossip and this info was the last thing I expected my last visit. He usually doesn't speak much as I've asked him point blank if I were a member of the forfeited generation, and he admitted that yes, I was. He said in any emerging disease, that one generation is considered a forfeit until the disease is to be taken seriously. Taught in med school. Now I am just passing along this information. He isn't a kidder or a bull tossing kind of doctor. He is the serious sort, so I'm still sizing him up. I also was concerned that maybe I got the MRSA from his office as I was there the week of the getting sick. But it really doesn't matter, because you bring to a point that I really haven't wanted to address. Fear I guess. But I never felt better on the rocephin, or the vancamyacin this time. And yes, when I had the periotonitis I did feel great on the vanomyacin. This time though they kept lowering the dose dragging out to two months what should have been resolved in a matter of weeks. They kept having to add other antibiotics. One was the one you recommended on the other forum, I passed it along. sorry I wasn't able to get back to you to confirm. Adding that one finally did the trick. Thanks.......... Do you have esp? Here is one problem. Supposedly the ID doctor I had for the MRSA is the best ID doctor in town. He is well known and highly respected for his AIDS work. But I cannot get him to take me seriously. He keeps blaming the pain narcotics for my problems. I'm trying to find another ID doctor but when I'm asked who I've got now, people tell me not to change. He tells me he won't treat me unless I get off the pain meds. So I agree. Behind my back, I find out later that he calls this woman pain doctor and tells her that I am a looney addicted pain med woman who needs to hospital detox . She agrees to see me, when all of a sudden she reviews my records and tells me that even if I only have one of the three rare diseases I more than warrant the pain medication I'm taking. She says she is going to call the ID doctor and tell him that he is the looney one. She wants to install a morphine pump. Now the ID doctor is pouting and mad that this woman doc didn't back him up and instead sided with the patient. Tony, I can't play these ego games. It is a joke. So I found another doctor who will just do oral antibiotics until I can regroup and find another ID doctor. I think last year that 85-90% if nt doctor visits were first visits where the doctor refused to take me on as a patient. Drove to Dallas and saw Stein Goldstein and even she wouldn't treat me. She said that Lyme was the least of my worries, that the central sleep apnea was a bigger problem Now she is well respected but even she refused to connect the diseases of my immune system, endocrine system and neuro system. I had an appt. with a endocrinolgoist last week that took three months to get. I was really sick that day, but didn't dare cancel. The doctor reamed me out good for coming and contaminating her office. She proclaimed they were a wellness office and she sent me home. She refused to see me that day. A wasted trip for me, dangerous with my condition, but she felt her health was more important than mine. If I die, I really want the world to know that modern doctors killed me with their games. No, I don't have to sue them, I just have to tell the truth all over the world. Lately the edema is really flaring and the gingivitis is flaring too. You would be shocked to know some of the meds I've been prescribed. They made me so ill, yet doctors prescribe them everyday to Alzheimers patients. The side effects list is horrid. it should be a crime to do this to those poor people who have no way to say STOP ! Okay better go, I will go get working on getting that antibiotic. Been running a fever all week. I'm trying to figure out if it doesn't get better by end of the weekend, I shall go to the ER. Since the ID doc is mad at me, and the new doc that is willing to prescribe antibiotics for me doesnt have hospital priviledges, I'm sorta stuck. Once Harvey retired mid stream in my lyme treamtent just as I was starting. it really left me in a big pickle. too tired to write anymore, sorry Peg Lanelle > > > > I apologize for sounding off, and so negative to boot......that > was > > not my intention. I've been struggling for all month and running a > > fever for a week. All of the doctor's I have seen are a good three > > months from an appointment, they tell me to go to the er if I feel > I > > need to. I guess I'm kind of testy today, cause I'm having a hard > > time deciding. If I dont have an infection, I will once I step > into > > the ER. My upper back is in a lot of pain, lung area is full of > > congestion > > > > The ID doctor who treated me for the MRSA back this winter says he > > will only be my doctor if I get off all narcotic pain medications. > > But the pain doctor says to tell him to go fly a kite. I can't > cause > > it is too hard to get ID doctors who will take me. Yet, pain is a > > major component of all three diseases that I have. > > Lack of brain oxygen =pain > > Producing no cortisol = pain > > immunoldeficiency =pain > > > > If I didn't hurt so much I'd be mad about it, but the pain doctor > > wants to put in a morphine pump, I guess he will really dump me > then. > > He is a good ID doctor, I've been turned down by three others. > San > > , is a hot bed of doctors refusing to treat patients > because > > they were hit by a ton of legal stuff. Even Dr. H (arvy) lives in > San > > , but practices in Houston. > > > > Get this, one neurologist refused to treat me because I was a > patient > > of Dr. H(arvy). That was the one that said why would a doc want to > > take you as a patient speech, so I didn't lose much as I blew her > > off. > > > > I have a great pain doctor, but she admitted that she didnt want > to > > take me, but she said that if she didn't she knew that no body > else > > in town would. She felt responsible enough for all those doctors > who > > don't .......I'm so grateful I've got her. > > > > I apolgize for my negative tone, I appreciate the information and > > support that everyone gives here, considering my participation is > so > > little. > > > > Thank you > > Peg Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2005 Report Share Posted June 10, 2005 Peg I strongly believe we are looking for tips in your treatment. Doing pill antibiotics on such huge infections is fraught with failure often. My plan for you would be to get you to try cephazolin and add in a couple of others if possable to get you closer to feeling your best. Your virtually my role model on vancomycin- 1 great week and zippo. They think in there testing this drug still kicks but I'm afraid it's useless after it turns.Also in the literature provided by the manufacturer it clearly states for staph infections staph areus you user vanco plus a second agent, when dealing with coag neg staphs you use vanco, gentamicin and rifampin. You've had bits and pieces of all these but the manufacturer clearly states you need the whole bang for the buck triple therapy to get the job done. Anyways if you have swings in your symptoms from doing IV's you can at least gauge what feels right. Also the antifungals can have a huge impact on your infection as you can observe with many here.They seem a tougher form of drug than the normal pill antibiotic. tony > > > > > > I apologize for sounding off, and so negative to boot......that > > was > > > not my intention. I've been struggling for all month and running > a > > > fever for a week. All of the doctor's I have seen are a good > three > > > months from an appointment, they tell me to go to the er if I > feel > > I > > > need to. I guess I'm kind of testy today, cause I'm having a hard > > > time deciding. If I dont have an infection, I will once I step > > into > > > the ER. My upper back is in a lot of pain, lung area is full of > > > congestion > > > > > > The ID doctor who treated me for the MRSA back this winter says > he > > > will only be my doctor if I get off all narcotic pain > medications. > > > But the pain doctor says to tell him to go fly a kite. I can't > > cause > > > it is too hard to get ID doctors who will take me. Yet, pain is a > > > major component of all three diseases that I have. > > > Lack of brain oxygen =pain > > > Producing no cortisol = pain > > > immunoldeficiency =pain > > > > > > If I didn't hurt so much I'd be mad about it, but the pain doctor > > > wants to put in a morphine pump, I guess he will really dump me > > then. > > > He is a good ID doctor, I've been turned down by three others. > > San > > > , is a hot bed of doctors refusing to treat patients > > because > > > they were hit by a ton of legal stuff. Even Dr. H (arvy) lives in > > San > > > , but practices in Houston. > > > > > > Get this, one neurologist refused to treat me because I was a > > patient > > > of Dr. H(arvy). That was the one that said why would a doc want > to > > > take you as a patient speech, so I didn't lose much as I blew her > > > off. > > > > > > I have a great pain doctor, but she admitted that she didnt want > > to > > > take me, but she said that if she didn't she knew that no body > > else > > > in town would. She felt responsible enough for all those doctors > > who > > > don't .......I'm so grateful I've got her. > > > > > > I apolgize for my negative tone, I appreciate the information and > > > support that everyone gives here, considering my participation is > > so > > > little. > > > > > > Thank you > > > Peg Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2005 Report Share Posted June 10, 2005 Tony I'm curious your thoughts on the antifungals as antibiotics. I now realize, with some new information I've been given that will be out next year, that band 93 is diagnostic and that I got lyme the first time at age 21 (summer, connecticut, atypical rash and joint soreness, no idea what I had) that resulted in episodic weird inflammatory conditions and persistent infections off and on for 20 years. During that time I believe it was all fungal (and did have fungal issues start up, since lyme is immunosuppressive, they are now figuring out it downregulates certain tcell mitogens, cd57 and natural killer cells). However I used to feel better if I took any antifungal, nizoral was what they had back then; even nystatin. Since Dr Schardt now has a protocol with diflucan...for lyme...that is helping some lymies, I am now wondering if the antifungals are viewed too narrowly. For instance nystatin interrupts ergosterol in yeast, well who's to say lyme doesnt need that too, after all, lymies often find themselves with raised cholesterol, i.e. lyme cannot make some of its own fats and uses ours. Also, many of the antifungals end in azole and the antiparasitics in azole (flagyl, tinidazole), the latter are often helpful in lyme. I know you don't think so much of lyme but that's okay, a book will come out next year that will blow your mind and all scientifically legal documented. BUt for now my question is actually more general. Have we overlooked antifungal efficacy in broader ways. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2005 Report Share Posted June 10, 2005 Jill I alway's try antifungals against bacteria. I actually bought nystatin testing discs for antimicrobial testing. The thing I discovered was around the drug nystatin I have a clearance zone from both staph epi(coag neg staph) the sinus bacteria, and pseudonomads aueriganosa a highly resistant bacterium only sensitive to very few agents.What a perfect drug nystatin can be when your sensitive in the staph department. With my belief systems? These are forged by therapeutic probes and outcomes. What ails you is very obvious to me when I look for bacterial toxins and bacterial responses to drugs.It's so clear cut with basic science it's scary. Most people are just hard done by when it comes to diagnosing and get stooged into a belief system that is bad science- especially amongst a lot of the medical community. Basically when you get both hands around your diagnosis is the only time to shout from the rafters, otherwise a whimper is the order of the day- because you don't stand up in medical diagnosis court. Lyme is well established there's been hundreds of thousands of sufferers and there's a little bit of a twist to what's happening to most on these forums that can be distingiushed with a good antibiotic probe.Even if lyme has been and gone you can have many numbers of secondary oppurtunist's that are going to stay for the long haul, these same oppurtunists are at the heart of every age related ilness observed in medical circles, unfortunately this forum pays them no lip service. If 20% of you red blood cells are parasitized by micrococcal species when violently ill I would think 20 billion bloodstream organisms need respect, especially when your suffering from neck stiffness and arthritic problems. commonsense got me well, stories and missing bacteria where the first things I needed to hurdle when my antibiotic probes and my success on nystatin pointed me in a different direction to where i was headed. Actually I just recall a couple of years back a delphi lyme forum made interesting reading. I think a forum host lightning may ring a bell? Anyway's my typical queries about people's histories and just other little diagnosis's led me to find she had to have a major staph infection drained out of her leg bone just below her hip without any abx treatment. She had a line in to drain pus from a site next to her bone and she wants to ignore a huge poorly treated infection. The other interesting part was there swaering by a fourth generation cephalasporin which seemed relatively OK, but single therapy to me is stupid. Just another thought for the day. As you can observe doctors are arseholes that know as little as possable. Anyway spent the morning taking my old man to the hospital due to liver problems from heavyt drinking.Anyways I speak to the doctor and also the leading proffesor of the department and surprise, surprise, surprise, these people give me the whole picture. When your toxic YOUR TIRED AND SLEEP ALL THE TIME. I go that's great can you teach your stupid colleagues across the hall.My fathers liver function tests are almost perfect and his liver's stuffed. They want him to take something that makes him go to the toilet twice a day because what's there is enough to do the damage.So again basic oppurtunists are enough.Do you know many that shoot water up there arse and swear by it. more later- I just can't be bothered, my message is get both your head and arms around your pathogen or your doing yourself an injustice. > Tony I'm curious your thoughts on the antifungals as antibiotics. > > I now realize, with some new information I've been given that will be > out next year, that band 93 is diagnostic and that I got lyme the > first time at age 21 (summer, connecticut, atypical rash and joint > soreness, no idea what I had) that resulted in episodic weird > inflammatory conditions and persistent infections off and on for 20 > years. During that time I believe it was all fungal (and did have > fungal issues start up, since lyme is immunosuppressive, they are now > figuring out it downregulates certain tcell mitogens, cd57 and > natural killer cells). However I used to feel better if I took any > antifungal, nizoral was what they had back then; even nystatin. > > Since Dr Schardt now has a protocol with diflucan...for lyme...that > is helping some lymies, I am now wondering if the antifungals are > viewed too narrowly. For instance nystatin interrupts ergosterol in > yeast, well who's to say lyme doesnt need that too, after all, lymies > often find themselves with raised cholesterol, i.e. lyme cannot make > some of its own fats and uses ours. > > Also, many of the antifungals end in azole and the antiparasitics in > azole (flagyl, tinidazole), the latter are often helpful in lyme. > > I know you don't think so much of lyme but that's okay, a book will > come out next year that will blow your mind and all scientifically > legal documented. BUt for now my question is actually more general. > Have we overlooked antifungal efficacy in broader ways. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2005 Report Share Posted June 10, 2005 Tony said: They want him to take something that makes him go to the toilet twice a day because what's there is enough to do the damage.So again basic oppurtunists are enough. What do you mean? That we've got huge bacterial colonies in the gi tract and clearing them out regularly lightens the load? That would help explain why things like charcoal can potentially help a lot, and reduce the toxic load, as was mentioned in that secondary porphyria artical the other day. Charcoal is amazing in what it can remove from the body. I posted about a Dr. Shulz's intestinal cleanse. The second phase of the product looked like it had some really great ingredients (including charcoal and bentonite clay), but before starting Intestinal Cleanse II they want you to use Intestinal Cleanse I until you are going to the bathroom 3 times a day. A lot of natural and non western doctors want you to go several times a day. I also read a pubmed abstract the other day in which they were reporting on a woman who presented sick with an infection, but was not getting well with treatment. She'd relapse once she came off the i.v.s. They discovered she had an " abcess " and once they surgically removed that she recovered 100%. I think this is exactly what's happening to many of us. We've got pockets of infection in unfortunate places (especially places like bone - which is so difficult to clear) which the drugs can't reach effectively. And until we recognize that, and DO figure out how to effectively reach these unreachable places, we just aren't going to have much success. penny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2005 Report Share Posted June 10, 2005 Basically Penny they observe patients with liver problems and want the gut moving because it reduces toxicities. Personally we already know people that swear by shoving a hose up there ass they feel great as long as they do it regularly, so this ties in with there same observations.I feel the charcoal and clay can form part of a treatment strategy, but generally DETOX is scientifically pretty much a dead duck treatment. You obviously feel better if you don't feed your bugs.I still alway's attempt to put the toxin producers to the knife. Unforttunately people don't realise how hearty bacteria are and what's required to kill them. Also all your staph epi's, clostridia species, gaffkya, marscenans, enterococcus, streptococcus are varying degree's of toxic by product producers so the lower your swabs grow the more excited I get. tony > Tony said: They want him to take something that makes him go to the > toilet twice a day because what's there is enough to do the > damage.So again basic oppurtunists are enough. > > What do you mean? That we've got huge bacterial colonies in the gi > tract and clearing them out regularly lightens the load? > > That would help explain why things like charcoal can potentially > help a lot, and reduce the toxic load, as was mentioned in that > secondary porphyria artical the other day. Charcoal is amazing in > what it can remove from the body. > > I posted about a Dr. Shulz's intestinal cleanse. The second phase of > the product looked like it had some really great ingredients > (including charcoal and bentonite clay), but before starting > Intestinal Cleanse II they want you to use Intestinal Cleanse I > until you are going to the bathroom 3 times a day. A lot of natural > and non western doctors want you to go several times a day. > > I also read a pubmed abstract the other day in which they were > reporting on a woman who presented sick with an infection, but was > not getting well with treatment. She'd relapse once she came off the > i.v.s. They discovered she had an " abcess " and once they surgically > removed that she recovered 100%. > > I think this is exactly what's happening to many of us. We've got > pockets of infection in unfortunate places (especially places like > bone - which is so difficult to clear) which the drugs can't reach > effectively. And until we recognize that, and DO figure out how to > effectively reach these unreachable places, we just aren't going to > have much success. > > penny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2005 Report Share Posted June 10, 2005 Yeah, but Tony. There are studies that show Charcoal can suck bacteria, parasites, yeast, toxins, viruses, all kinds of stuff out of your gut (and away from other places we don't want them to travel). I doubt it can get into the hidden places like bone or organs or deep tissue, but if it can help clean up the gut, where a lot of our health originates and toxins are produced, that's a big step forward in knocking down the load. Also, if it reduces symptoms of malaise, fatigue, and brain fog, then you're more capable of pursuing more complicated treatment. When you've got all those things going on, it's hard to do anything for yourself. I think charcoal, and maybe salt and C, and other self treatment options, could all be simple things we could do to help our progress along. Also, enzymes and antioxidants, like the milk thistle you like, could really be helping us put together a whole package that we just can't get from our doctors, who are basically pretty clueless and just not dependable. Once we're feeling better, then we can do the investigation and devise strategies to get the docs to give us the drugs WE believe will help us most, not the ones they've barely researched. penny > > Tony said: They want him to take something that makes him go to > the > > toilet twice a day because what's there is enough to do the > > damage.So again basic oppurtunists are enough. > > > > What do you mean? That we've got huge bacterial colonies in the gi > > tract and clearing them out regularly lightens the load? > > > > That would help explain why things like charcoal can potentially > > help a lot, and reduce the toxic load, as was mentioned in that > > secondary porphyria artical the other day. Charcoal is amazing in > > what it can remove from the body. > > > > I posted about a Dr. Shulz's intestinal cleanse. The second phase > of > > the product looked like it had some really great ingredients > > (including charcoal and bentonite clay), but before starting > > Intestinal Cleanse II they want you to use Intestinal Cleanse I > > until you are going to the bathroom 3 times a day. A lot of > natural > > and non western doctors want you to go several times a day. > > > > I also read a pubmed abstract the other day in which they were > > reporting on a woman who presented sick with an infection, but was > > not getting well with treatment. She'd relapse once she came off > the > > i.v.s. They discovered she had an " abcess " and once they > surgically > > removed that she recovered 100%. > > > > I think this is exactly what's happening to many of us. We've got > > pockets of infection in unfortunate places (especially places like > > bone - which is so difficult to clear) which the drugs can't reach > > effectively. And until we recognize that, and DO figure out how to > > effectively reach these unreachable places, we just aren't going > to > > have much success. > > > > penny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2005 Report Share Posted June 11, 2005 " As you can observe doctors are arseholes that know as little as possable. " Yeah. Agreed. I got my first tickbite, I now realize, in the overgrown backyard at Yale at age 21. Borrelia, given your genetics, can allow some widespread immune dysfunction and then youcould let in other microbes. But with Schardt's evidence that diflucan works in lyme, I began to wonder if even nystatin did. It interrupts ergosterol, thats how they think it kills yeast, right? Wellw hat if it does something similar to bacteria/ Or how *is* it killing certain bacteria. I say this because my early lyme symptoms were consistently suppressed first with nizoral and then with nystatin. So I just thought I had some indescribable fungus that nothing could cure so therefore I was immunologically defective. I now KNOW, because of some new information I've gotten, that I got borrelia at 21. So if antifungals were working, then I'dl ike to investigate Schardt's hypothesis even further. And what you've seen with nystatin is interesting. I still wish Ihad the time and gumption to train myself on a microscope as you did, but...I just am too overwhelmed at the moment with work, and sans hyperbaric chamber going on 3 weeks now and probably another 2 weeks, I'm really a mess!!!!!! I need my fricken chamber back!!!! > > Tony I'm curious your thoughts on the antifungals as antibiotics. > > > > I now realize, with some new information I've been given that will > be > > out next year, that band 93 is diagnostic and that I got lyme the > > first time at age 21 (summer, connecticut, atypical rash and joint > > soreness, no idea what I had) that resulted in episodic weird > > inflammatory conditions and persistent infections off and on for > 20 > > years. During that time I believe it was all fungal (and did have > > fungal issues start up, since lyme is immunosuppressive, they are > now > > figuring out it downregulates certain tcell mitogens, cd57 and > > natural killer cells). However I used to feel better if I took any > > antifungal, nizoral was what they had back then; even nystatin. > > > > Since Dr Schardt now has a protocol with diflucan...for > lyme...that > > is helping some lymies, I am now wondering if the antifungals are > > viewed too narrowly. For instance nystatin interrupts ergosterol > in > > yeast, well who's to say lyme doesnt need that too, after all, > lymies > > often find themselves with raised cholesterol, i.e. lyme cannot > make > > some of its own fats and uses ours. > > > > Also, many of the antifungals end in azole and the antiparasitics > in > > azole (flagyl, tinidazole), the latter are often helpful in lyme. > > > > I know you don't think so much of lyme but that's okay, a book > will > > come out next year that will blow your mind and all scientifically > > legal documented. BUt for now my question is actually more > general. > > Have we overlooked antifungal efficacy in broader ways. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2005 Report Share Posted June 11, 2005 Jill if you had success with nystatin don't scream from the rafters you treated LYME.Nystatin is possably succesfull in about 50% of autoimmune patients and it only gives relief when it attacks your staph epi. the pseudonomads going down is a bonus but has no bearing for my systemic ilness.It virtually only makes me feel better when it killed my staphs, which it no longer does, although it took a long time for it to build resistance. Sorry if I sound like a broken record but if your NOT TREATING THINGS 100% right your chances are slimer than I'm sure you'd like.QAlso do sleep apnea oxygen as it's for 8 hours a day as opposed to crappy sessions 5 times a week that cost a fortune. tony > > > Tony I'm curious your thoughts on the antifungals as antibiotics. > > > > > > I now realize, with some new information I've been given that > will > > be > > > out next year, that band 93 is diagnostic and that I got lyme the > > > first time at age 21 (summer, connecticut, atypical rash and > joint > > > soreness, no idea what I had) that resulted in episodic weird > > > inflammatory conditions and persistent infections off and on for > > 20 > > > years. During that time I believe it was all fungal (and did have > > > fungal issues start up, since lyme is immunosuppressive, they are > > now > > > figuring out it downregulates certain tcell mitogens, cd57 and > > > natural killer cells). However I used to feel better if I took > any > > > antifungal, nizoral was what they had back then; even nystatin. > > > > > > Since Dr Schardt now has a protocol with diflucan...for > > lyme...that > > > is helping some lymies, I am now wondering if the antifungals are > > > viewed too narrowly. For instance nystatin interrupts ergosterol > > in > > > yeast, well who's to say lyme doesnt need that too, after all, > > lymies > > > often find themselves with raised cholesterol, i.e. lyme cannot > > make > > > some of its own fats and uses ours. > > > > > > Also, many of the antifungals end in azole and the antiparasitics > > in > > > azole (flagyl, tinidazole), the latter are often helpful in lyme. > > > > > > I know you don't think so much of lyme but that's okay, a book > > will > > > come out next year that will blow your mind and all > scientifically > > > legal documented. BUt for now my question is actually more > > general. > > > Have we overlooked antifungal efficacy in broader ways. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2005 Report Share Posted June 11, 2005 Well I never really did treat it, I suppressed it, and it would flare up--I have had an epiphany based on research this writer has told me, in the last few weeks. I have had an epiphany about my entire health history since age 21. I probably have 2 lyme strains and 1 babesia, 1 lyme from age 21 and the other 2 from the year 2000 (summer). I had typical relapsing remitting weirdo afflictions that would then pass, for many years, after a summer at Yale. Its so obvious in retrospect its laughable. Except its not at all laughable. Anyway. I'm trying the salt/c. My sessions hbo are not expensive since I own my chamber, but its now out for repair. And frankly it saved my life. It suppresses the borrelia for sure, for all I know it also suppresses babesia. I have an idea about allicin too. But I'm not sure I can pull off my idea. We'll see if scientists think its possible. I have a bit of research and schmoozing ahead of me to say the least. I have 2 ideas for a product, neither one is in existence at the moment. > > > > Tony I'm curious your thoughts on the antifungals as > antibiotics. > > > > > > > > I now realize, with some new information I've been given that > > will > > > be > > > > out next year, that band 93 is diagnostic and that I got lyme > the > > > > first time at age 21 (summer, connecticut, atypical rash and > > joint > > > > soreness, no idea what I had) that resulted in episodic weird > > > > inflammatory conditions and persistent infections off and on > for > > > 20 > > > > years. During that time I believe it was all fungal (and did > have > > > > fungal issues start up, since lyme is immunosuppressive, they > are > > > now > > > > figuring out it downregulates certain tcell mitogens, cd57 and > > > > natural killer cells). However I used to feel better if I took > > any > > > > antifungal, nizoral was what they had back then; even nystatin. > > > > > > > > Since Dr Schardt now has a protocol with diflucan...for > > > lyme...that > > > > is helping some lymies, I am now wondering if the antifungals > are > > > > viewed too narrowly. For instance nystatin interrupts > ergosterol > > > in > > > > yeast, well who's to say lyme doesnt need that too, after all, > > > lymies > > > > often find themselves with raised cholesterol, i.e. lyme > cannot > > > make > > > > some of its own fats and uses ours. > > > > > > > > Also, many of the antifungals end in azole and the > antiparasitics > > > in > > > > azole (flagyl, tinidazole), the latter are often helpful in > lyme. > > > > > > > > I know you don't think so much of lyme but that's okay, a book > > > will > > > > come out next year that will blow your mind and all > > scientifically > > > > legal documented. BUt for now my question is actually more > > > general. > > > > Have we overlooked antifungal efficacy in broader ways. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2005 Report Share Posted June 11, 2005 When Jill and Tony discuss improvement from Nystatin, are they suggesting that whatever its fixing is pretty much a gut infection? > > > > Tony I'm curious your thoughts on the antifungals as > antibiotics. > > > > > > > > I now realize, with some new information I've been given that > > will > > > be > > > > out next year, that band 93 is diagnostic and that I got lyme > the > > > > first time at age 21 (summer, connecticut, atypical rash and > > joint > > > > soreness, no idea what I had) that resulted in episodic weird > > > > inflammatory conditions and persistent infections off and on > for > > > 20 > > > > years. During that time I believe it was all fungal (and did > have > > > > fungal issues start up, since lyme is immunosuppressive, they > are > > > now > > > > figuring out it downregulates certain tcell mitogens, cd57 and > > > > natural killer cells). However I used to feel better if I took > > any > > > > antifungal, nizoral was what they had back then; even nystatin. > > > > > > > > Since Dr Schardt now has a protocol with diflucan...for > > > lyme...that > > > > is helping some lymies, I am now wondering if the antifungals > are > > > > viewed too narrowly. For instance nystatin interrupts > ergosterol > > > in > > > > yeast, well who's to say lyme doesnt need that too, after all, > > > lymies > > > > often find themselves with raised cholesterol, i.e. lyme > cannot > > > make > > > > some of its own fats and uses ours. > > > > > > > > Also, many of the antifungals end in azole and the > antiparasitics > > > in > > > > azole (flagyl, tinidazole), the latter are often helpful in > lyme. > > > > > > > > I know you don't think so much of lyme but that's okay, a book > > > will > > > > come out next year that will blow your mind and all > > scientifically > > > > legal documented. BUt for now my question is actually more > > > general. > > > > Have we overlooked antifungal efficacy in broader ways. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2005 Report Share Posted June 12, 2005 Unfortunately people tie in strongly to an early observation that a drug doesn't distribute widely it only stays in the gut.. Streptomyces based drugs which many are derived from are great tissue and body fluid distributors, so when your reading 1950's literature and many drugs developed in the 70's have magnificent distribution from the same agent I would disregard the 50's theory that it's just for the gut.I found it instantly cleraed the head.I also found it went further and gave me some relief in the sore shin bones. > > > > > Tony I'm curious your thoughts on the antifungals as > > antibiotics. > > > > > > > > > > I now realize, with some new information I've been given that > > > will > > > > be > > > > > out next year, that band 93 is diagnostic and that I got lyme > > the > > > > > first time at age 21 (summer, connecticut, atypical rash and > > > joint > > > > > soreness, no idea what I had) that resulted in episodic weird > > > > > inflammatory conditions and persistent infections off and on > > for > > > > 20 > > > > > years. During that time I believe it was all fungal (and did > > have > > > > > fungal issues start up, since lyme is immunosuppressive, they > > are > > > > now > > > > > figuring out it downregulates certain tcell mitogens, cd57 > and > > > > > natural killer cells). However I used to feel better if I > took > > > any > > > > > antifungal, nizoral was what they had back then; even > nystatin. > > > > > > > > > > Since Dr Schardt now has a protocol with diflucan...for > > > > lyme...that > > > > > is helping some lymies, I am now wondering if the antifungals > > are > > > > > viewed too narrowly. For instance nystatin interrupts > > ergosterol > > > > in > > > > > yeast, well who's to say lyme doesnt need that too, after > all, > > > > lymies > > > > > often find themselves with raised cholesterol, i.e. lyme > > cannot > > > > make > > > > > some of its own fats and uses ours. > > > > > > > > > > Also, many of the antifungals end in azole and the > > antiparasitics > > > > in > > > > > azole (flagyl, tinidazole), the latter are often helpful in > > lyme. > > > > > > > > > > I know you don't think so much of lyme but that's okay, a > book > > > > will > > > > > come out next year that will blow your mind and all > > > scientifically > > > > > legal documented. BUt for now my question is actually more > > > > general. > > > > > Have we overlooked antifungal efficacy in broader ways. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2005 Report Share Posted June 13, 2005 Tony, I can't believe it....six long years and you are the FIRST person I've come across that had the same pain location as me. I say this because everyone has told me how strange it is to have such awful shin pain and not from overuse. The pain in my shin didn't start until the third year, but it has made up for lost time. My second strange symptom is those spasms that start at the nape of the neck and travel to the crown of the head. Only one side of the brain at a time. I've tried to talk to doctor's about infection, but all have denied the possibility. Yet, after a month on antibiotics, it goes away. (except it came back while on vanco) I have even been told that I don't have lyme because my symptoms of shin pain, head spasms and others are not typical lyme symptoms. And yet the Bowen test result showed the highest possible concentration. Anyway, I'm honored to share the shin pain with you....as silly as that seems. It is lonely out there when you have a loner symptom that get sneers and geers. You get to the point where you stop mentioning them. take care lanelle > > > > > > Tony I'm curious your thoughts on the antifungals as > > > antibiotics. > > > > > > > > > > > > I now realize, with some new information I've been given > that > > > > will > > > > > be > > > > > > out next year, that band 93 is diagnostic and that I got > lyme > > > the > > > > > > first time at age 21 (summer, connecticut, atypical rash > and > > > > joint > > > > > > soreness, no idea what I had) that resulted in episodic > weird > > > > > > inflammatory conditions and persistent infections off and > on > > > for > > > > > 20 > > > > > > years. During that time I believe it was all fungal (and > did > > > have > > > > > > fungal issues start up, since lyme is immunosuppressive, > they > > > are > > > > > now > > > > > > figuring out it downregulates certain tcell mitogens, cd57 > > and > > > > > > natural killer cells). However I used to feel better if I > > took > > > > any > > > > > > antifungal, nizoral was what they had back then; even > > nystatin. > > > > > > > > > > > > Since Dr Schardt now has a protocol with diflucan...for > > > > > lyme...that > > > > > > is helping some lymies, I am now wondering if the > antifungals > > > are > > > > > > viewed too narrowly. For instance nystatin interrupts > > > ergosterol > > > > > in > > > > > > yeast, well who's to say lyme doesnt need that too, after > > all, > > > > > lymies > > > > > > often find themselves with raised cholesterol, i.e. lyme > > > cannot > > > > > make > > > > > > some of its own fats and uses ours. > > > > > > > > > > > > Also, many of the antifungals end in azole and the > > > antiparasitics > > > > > in > > > > > > azole (flagyl, tinidazole), the latter are often helpful > in > > > lyme. > > > > > > > > > > > > I know you don't think so much of lyme but that's okay, a > > book > > > > > will > > > > > > come out next year that will blow your mind and all > > > > scientifically > > > > > > legal documented. BUt for now my question is actually more > > > > > general. > > > > > > Have we overlooked antifungal efficacy in broader ways. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2005 Report Share Posted June 13, 2005 Lanelle I got mine from playing outdoor sports but the science is more along the lines of sinus bacteria spreading.The first discovery I made when visiting the hospital library was how the staph species love to attack the long bones of the legs. I then got my blood culture of coagulase negative staph which made the shin pain VERY VERY ACCEPTABLE as a diagnosis of a staph problem. I also recall the same article describing tuberculosis bacteria attacking and destroying the bone just above the joint. I also would think using vanco after it's turned will give you more pain and symptoms. This is covered in the vanco literature when they tell you how to use there drug and how to cimbine it with other drugs against certain organisms. Unfortunately doctors forgot how to read. tony > > > > > > > Tony I'm curious your thoughts on the antifungals as > > > > antibiotics. > > > > > > > > > > > > > > I now realize, with some new information I've been given > > that > > > > > will > > > > > > be > > > > > > > out next year, that band 93 is diagnostic and that I got > > lyme > > > > the > > > > > > > first time at age 21 (summer, connecticut, atypical rash > > and > > > > > joint > > > > > > > soreness, no idea what I had) that resulted in episodic > > weird > > > > > > > inflammatory conditions and persistent infections off and > > on > > > > for > > > > > > 20 > > > > > > > years. During that time I believe it was all fungal (and > > did > > > > have > > > > > > > fungal issues start up, since lyme is immunosuppressive, > > they > > > > are > > > > > > now > > > > > > > figuring out it downregulates certain tcell mitogens, > cd57 > > > and > > > > > > > natural killer cells). However I used to feel better if I > > > took > > > > > any > > > > > > > antifungal, nizoral was what they had back then; even > > > nystatin. > > > > > > > > > > > > > > Since Dr Schardt now has a protocol with diflucan...for > > > > > > lyme...that > > > > > > > is helping some lymies, I am now wondering if the > > antifungals > > > > are > > > > > > > viewed too narrowly. For instance nystatin interrupts > > > > ergosterol > > > > > > in > > > > > > > yeast, well who's to say lyme doesnt need that too, after > > > all, > > > > > > lymies > > > > > > > often find themselves with raised cholesterol, i.e. lyme > > > > cannot > > > > > > make > > > > > > > some of its own fats and uses ours. > > > > > > > > > > > > > > Also, many of the antifungals end in azole and the > > > > antiparasitics > > > > > > in > > > > > > > azole (flagyl, tinidazole), the latter are often helpful > > in > > > > lyme. > > > > > > > > > > > > > > I know you don't think so much of lyme but that's okay, a > > > book > > > > > > will > > > > > > > come out next year that will blow your mind and all > > > > > scientifically > > > > > > > legal documented. BUt for now my question is actually > more > > > > > > general. > > > > > > > Have we overlooked antifungal efficacy in broader ways. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2005 Report Share Posted June 13, 2005 I also feel the extreme severity of my own and your disease possably explain the hugeness of the infection.My plans for you would be to try and get down to mexico and get them to give you serious IV treatments, they have cephalothin down there which is very cheap and far superior and possably capable of getting you up a couple of notches. tony > > > > > > > Tony I'm curious your thoughts on the antifungals as > > > > antibiotics. > > > > > > > > > > > > > > I now realize, with some new information I've been given > > that > > > > > will > > > > > > be > > > > > > > out next year, that band 93 is diagnostic and that I got > > lyme > > > > the > > > > > > > first time at age 21 (summer, connecticut, atypical rash > > and > > > > > joint > > > > > > > soreness, no idea what I had) that resulted in episodic > > weird > > > > > > > inflammatory conditions and persistent infections off and > > on > > > > for > > > > > > 20 > > > > > > > years. During that time I believe it was all fungal (and > > did > > > > have > > > > > > > fungal issues start up, since lyme is immunosuppressive, > > they > > > > are > > > > > > now > > > > > > > figuring out it downregulates certain tcell mitogens, > cd57 > > > and > > > > > > > natural killer cells). However I used to feel better if I > > > took > > > > > any > > > > > > > antifungal, nizoral was what they had back then; even > > > nystatin. > > > > > > > > > > > > > > Since Dr Schardt now has a protocol with diflucan...for > > > > > > lyme...that > > > > > > > is helping some lymies, I am now wondering if the > > antifungals > > > > are > > > > > > > viewed too narrowly. For instance nystatin interrupts > > > > ergosterol > > > > > > in > > > > > > > yeast, well who's to say lyme doesnt need that too, after > > > all, > > > > > > lymies > > > > > > > often find themselves with raised cholesterol, i.e. lyme > > > > cannot > > > > > > make > > > > > > > some of its own fats and uses ours. > > > > > > > > > > > > > > Also, many of the antifungals end in azole and the > > > > antiparasitics > > > > > > in > > > > > > > azole (flagyl, tinidazole), the latter are often helpful > > in > > > > lyme. > > > > > > > > > > > > > > I know you don't think so much of lyme but that's okay, a > > > book > > > > > > will > > > > > > > come out next year that will blow your mind and all > > > > > scientifically > > > > > > > legal documented. BUt for now my question is actually > more > > > > > > general. > > > > > > > Have we overlooked antifungal efficacy in broader ways. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2005 Report Share Posted June 13, 2005 Lanelle, " Trench fever " , caused by bartonella henslae and bartonella quintana, is also called " shin bone fever " because of the characteristic shin bone and leg pain. Bartonella has been one of the coinfections that confounded our own treatment until recently. It is usually treated with levaquin, rifampin, or gentomycin. For a more, see http://www.chclibrary.org/micromed/00068900.html --- In infections , " Peg " <lanelle@h...> wrote: > I say this because everyone has told me how strange it is to have such > awful shin pain and not from overuse. The pain in my shin didn't > start until the third year, but it has made up for lost time. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2005 Report Share Posted June 14, 2005 Lanelle I would want to see bacteria before being treated for the cat scratch fever bugs.I think it's dangerous to be given advise when your history of staph areus, MRSA and whatever else are leading the charge of giving you symptoms. I know many who've had bone marrow aspiration from distant sites and these exotic bacteria aren't there it's always the usual culprits. I would actually get your doctor to do the simple MRSA sinus swab, it would show how undermedicated and under appreciated infections are if you still come back positive. I know the bugs on my shins, and staph species, marscenans, lead the charge. Bacteria are making our bones like swiss cheese and the usual culprits are there six months and twelve months later, surprisingly identically in a culture plate.When you loose blood volume the skin is diseased slowly and then the skeleton which has the skin as it's largest protection is also under fire. I think you'll observe in any accident the people treating the patient are very aware of keeping the blood volume up by putting in an IV saline line because it makes a huge difference to the patient.It's like they know they can introduce chronic toxicity diseases to patients who aren't looked after the right way. > > I say this because everyone has told me how strange it is to have such > > awful shin pain and not from overuse. The pain in my shin didn't > > start until the third year, but it has made up for lost time. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2005 Report Share Posted June 14, 2005 Tony, I don't have a clue as to why ?? I was reading your note and thinking to myself that there is no reason for your kindness to me over these years. I often tell others that if it were not for that swab you graciously inspected I don't know if I would be here today. I know that it would have taken much much longer for it to dawn on me to look at the infectious route. I had only been to see two ID doctors who both were a disgrace to their profession. I figured if I were going to get well it would have to be something along the birth of Christ. I was stuck in the shame game of modern medicines ducs and you were the first one to say. " Its not your fault , its theirs. " It's one thing for you to have the apptitude to absorb the needed knowledge, but your gift is in sharing it with others in an easily understood way. I'm sure I didn't get around to telling you, I just remember being so lost and confused and betrayed by doctors, but I really appreciated all of your help. Regards Lanelle -- In infections , " dumbaussie2000 " <dumbaussie2000@y...> wrote: > I also feel the extreme severity of my own and your disease possably > explain the hugeness of the infection.My plans for you would be to > try and get down to mexico and get them to give you serious IV > treatments, they have cephalothin down there which is very cheap and > far superior and possably capable of getting you up a couple of > notches. > tony > > > > > > > > > > > Tony I'm curious your thoughts on the antifungals as > > > > > antibiotics. > > > > > > > > > > > > > > > > I now realize, with some new information I've been > given > > > that > > > > > > will > > > > > > > be > > > > > > > > out next year, that band 93 is diagnostic and that I > got > > > lyme > > > > > the > > > > > > > > first time at age 21 (summer, connecticut, atypical > rash > > > and > > > > > > joint > > > > > > > > soreness, no idea what I had) that resulted in > episodic > > > weird > > > > > > > > inflammatory conditions and persistent infections off > and > > > on > > > > > for > > > > > > > 20 > > > > > > > > years. During that time I believe it was all fungal > (and > > > did > > > > > have > > > > > > > > fungal issues start up, since lyme is > immunosuppressive, > > > they > > > > > are > > > > > > > now > > > > > > > > figuring out it downregulates certain tcell mitogens, > > cd57 > > > > and > > > > > > > > natural killer cells). However I used to feel better > if I > > > > took > > > > > > any > > > > > > > > antifungal, nizoral was what they had back then; even > > > > nystatin. > > > > > > > > > > > > > > > > Since Dr Schardt now has a protocol with > diflucan...for > > > > > > > lyme...that > > > > > > > > is helping some lymies, I am now wondering if the > > > antifungals > > > > > are > > > > > > > > viewed too narrowly. For instance nystatin interrupts > > > > > ergosterol > > > > > > > in > > > > > > > > yeast, well who's to say lyme doesnt need that too, > after > > > > all, > > > > > > > lymies > > > > > > > > often find themselves with raised cholesterol, i.e. > lyme > > > > > cannot > > > > > > > make > > > > > > > > some of its own fats and uses ours. > > > > > > > > > > > > > > > > Also, many of the antifungals end in azole and the > > > > > antiparasitics > > > > > > > in > > > > > > > > azole (flagyl, tinidazole), the latter are often > helpful > > > in > > > > > lyme. > > > > > > > > > > > > > > > > I know you don't think so much of lyme but that's > okay, a > > > > book > > > > > > > will > > > > > > > > come out next year that will blow your mind and all > > > > > > scientifically > > > > > > > > legal documented. BUt for now my question is actually > > more > > > > > > > general. > > > > > > > > Have we overlooked antifungal efficacy in broader ways. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2005 Report Share Posted June 14, 2005 Lanelle I would appreciate to read how they gave you a regime of drugs that started you back to the land of the living.I am also very familiar with the pain, and the enormity of the problem as I turned up at the ER more than anyone else in forum land.I think I hit 2 ER's a night many nights to see if anyone gets it.I do recall telling one duc how I felt like I was suffering from toxic shock syndrome whihc I later discover is possably 100% on the money. But anyways it's real important that you don't miss an oppurtunity at youre next ID visit to get swabbed for MRSA to see the jobs been done and not half cooked like the rest of your treatment therapies. > > > > > > > > > Tony I'm curious your thoughts on the antifungals as > > > > > > antibiotics. > > > > > > > > > > > > > > > > > > I now realize, with some new information I've been > > given > > > > that > > > > > > > will > > > > > > > > be > > > > > > > > > out next year, that band 93 is diagnostic and that I > > got > > > > lyme > > > > > > the > > > > > > > > > first time at age 21 (summer, connecticut, atypical > > rash > > > > and > > > > > > > joint > > > > > > > > > soreness, no idea what I had) that resulted in > > episodic > > > > weird > > > > > > > > > inflammatory conditions and persistent infections off > > and > > > > on > > > > > > for > > > > > > > > 20 > > > > > > > > > years. During that time I believe it was all fungal > > (and > > > > did > > > > > > have > > > > > > > > > fungal issues start up, since lyme is > > immunosuppressive, > > > > they > > > > > > are > > > > > > > > now > > > > > > > > > figuring out it downregulates certain tcell mitogens, > > > cd57 > > > > > and > > > > > > > > > natural killer cells). However I used to feel better > > if I > > > > > took > > > > > > > any > > > > > > > > > antifungal, nizoral was what they had back then; even > > > > > nystatin. > > > > > > > > > > > > > > > > > > Since Dr Schardt now has a protocol with > > diflucan...for > > > > > > > > lyme...that > > > > > > > > > is helping some lymies, I am now wondering if the > > > > antifungals > > > > > > are > > > > > > > > > viewed too narrowly. For instance nystatin interrupts > > > > > > ergosterol > > > > > > > > in > > > > > > > > > yeast, well who's to say lyme doesnt need that too, > > after > > > > > all, > > > > > > > > lymies > > > > > > > > > often find themselves with raised cholesterol, i.e. > > lyme > > > > > > cannot > > > > > > > > make > > > > > > > > > some of its own fats and uses ours. > > > > > > > > > > > > > > > > > > Also, many of the antifungals end in azole and the > > > > > > antiparasitics > > > > > > > > in > > > > > > > > > azole (flagyl, tinidazole), the latter are often > > helpful > > > > in > > > > > > lyme. > > > > > > > > > > > > > > > > > > I know you don't think so much of lyme but that's > > okay, a > > > > > book > > > > > > > > will > > > > > > > > > come out next year that will blow your mind and all > > > > > > > scientifically > > > > > > > > > legal documented. BUt for now my question is actually > > > more > > > > > > > > general. > > > > > > > > > Have we overlooked antifungal efficacy in broader > ways. Quote Link to comment Share on other sites More sharing options...
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