Guest guest Posted June 10, 2005 Report Share Posted June 10, 2005 Jill: The presence of molecular weight 93 kDa being specific for Lyme is not new news... as far as I know. 93 kDa and 83 kDa are synonymous with the 100 kDa antigen... Can you give a little more info about what you're alluding to? Barb References: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi? cmd=Retrieve & db=pubmed & dopt=Abstract & list_uids=9542898 & query_hl=21 http://www.pubmedcentral.nih.gov/picrender.fcgi? artid=228536 & blobtype=pdf > 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 > > 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 Its news as far as most docs, my former holistic doc who had lyme twice, and the CDC are concerned. My test blatantly says, band 93, NONSPECIFIC. No lyme. > > 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 > > 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 Oh. I didn't think we were discussing what clinicians beleived. They don't even think chronic Lyme exists- so I can totally beleive they don't have a clue about what bands can be expressed at what stage, or for what species. Barb > > > 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 Because, Barb, that was 16 years ago that I was convinced I had lyme and did my best back then to prove it at Stonybrook. And again, 10 years ago. There was almost no information back then that I could have gotten...there is much more now with internet etc. So I now know I had lyme since age 21, as I said. And got it again 5 years ago. And at that time, as I now understand, I was in an area epidemic for babesia, in as high #'s as lyme. So likely the intensity of bite #2 in laying me flat for 8 months, is a combo of babs and lyme. And in spite of my feelings about it--my intuitive gut feeling so long ago that I had lyme...and my feeling 5 years ago that I had both lyme and babesia...I couldn't get proper testing at all. I couldn't get any docs to test for babesia in the acute phase of my 2nd bite. Not even my holistic doc who'd had lyme twice and done IV rocephin once. He looked straight at me and said, " I'm not going to put you on mepron so there's no point to test you for babesia. " So...now I have all the proof I ever needed for what I always intuitively knew. There is enough evidence even about which hotspots are epidemic for which microbes. IE they find a lot of bartonella in New Jersey. A lot of babesia now in southeastern connecticut. And I'm just in a very upset frame of mind at the moment that there are not public health guidelines from the CDC, which full well knows ALL of this. It is perfeclty easy with the info we have now at this moment, to issue guidelines about which tbd to test for in which areas. Maybe this is all obvious but even as much as I knew, I didn't have all the facts lined up in hard cold truth until I was handed them on a silver platter recently. And she also said, not to blame myself. That " only the luckiest and the smartest even ever find out what hit them. " She said its even worse today for tickborne disease, ie cards stacked even higher these days. > > > > 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: I do understand where you're coming from. I went thru the medical mill in the 70's - finally almost admitting I was a weird as my symptoms (which would come and go like I was someone's voodoo doll). My anger with the medical profession would wax and wan like my symptoms would. I could go from riding my horses to being not able to walk... sane to feeling insane. Yesterday they had a short blurb on NPR about how Dr.s see 1 patient every 10 or 15 minutes, and how stressed THEY are in their jobs - I almost spit my coffee on the dashboard of my car. But you know what? Thats the truth - it's a job to them (with few exceptions) and we're widgets (with few exceptions) to them... and I have had very low expectations of what I can expect from them (at astronomical prices) for some time now. And in my opinion, untill testing gets to the point where it's standardized and reliable (for Lyme) and it's accepted that long-term treatment is needed, then patients are going to be continally emotionally and financially yanked around at high expence to them. Most of my anger still lies with the drug companies, the fda, and the ama (not the hamstrung Drs.). It **is** all about making money in business, and has very little to do wiht health. What and Kate are going thru right now is not a new story. They aren't the first, not will they be the last. WHat still gets my dander up, is stories like the recent discussion on Tagamet. Man- if it's not a prescription the Dr.s never even mention it - rather the new 'shingles vaccine' is in the news. I have friend in FLorida with shingles I told about Tagamet - hopefull he'll went out and bought some. Jaded, by recently feeling charmed, Barb > > > > > 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 What's unusual in your story is how quickly you responded to relatively short courses of the right meds after years. The voodoo doll image is appropriate. I felt EXACTLY like that from my first bite. Things came on suddenly and were horrible and gradually subsided. I came to feel different, strange, like some little demon was following me around. ANd yet I was not globally ill. I was functioning, travelling around the world etc. At the same time I developed a deep mistrust of and fear of my own body--what it might do at any time. And, at any time a new ailment came on, I 'swandove' as my exhusband put it, into a kind of hopelessness. Who could understand an invisible spirochetisos or however you'd spell it-- anyway who, even the suffering party i.e. me could understand the bizareness of this infection, and certainly to outsiders it looked like extreme bouts of neuroticism. And I can tell you most certainly that has shaped my life only to detriment. People are human thus flawed. THey didn't know what was going on with me. A friend of mine Blayne drove me out to Stonybrook sympathetically as at age 31 whatever was happening, I was convinced I had lyme and very upset. And when they said no, well, Blayne and others kindly retreated from me. It wasn't obvious, no maginot lines. Just that...hmmm, I think that girl's a bit crazy. Not to mention the effect it had on my already very dysfunctional parents. They never believed any of it. ly I have been in tears for days now because the information is so detailed and stark. I mean, she researched this for 5 years, talked to every scientist, and originally wrote 1000 pp which of course had to be cut by about 700 pp . SHe has a great mind and so she has dissected this information so meticulously. I think I always sort of 'knew' or suspected this but now it's there in cold blood as one would say. That Yale knew for 25 years that its persistent and can never be fully killed by antibiotics, that a year after infection 15-20% will have permanent disability. But I always thought for instance that they had not DEVELOPED a good test, not that they purposely altered the test results. That I did not realize. She said that it was literally a holy war with Masters--who knew there was borrelia down south just not bb. For reasons I still cannot fathom, I really cannot except for the bioweapons idea which she found no evidence of at all, they have completely derailed this epidemic, said it didn't exist, changed test results, hid unpublished data that was contrary. Why? Steere is bad (apparently, while willingly making that OspA vaccine, he also stated that it could cause autoimmune illness, which of course, makes him a total fricken psychopath), but he was elevated by other unseeen forces to his place of power. He was not the shaping force, he was the willingly shaped force in this evil. She says it was like this for all of us, but really, I had a good holistic doc who'd had meningitis from lyme--you think he would've tested me for babesia if I asked. But he refused. nne Barrett, who got well from ICHT, said to me a few months ago, looked straight in my eyes and said, you really should get tested for it. I knew she had good intuition and I agreed. She said it was the missing piece in her daughter's lyme. I will test for it but in any case I think I'm going to ask you more details about arthemos and what you did, I recall it vaguely, I am sure somehow I can get it with my connections to various doctors, and then I recall you did tetracycline to get it out of the liver. ALTHOUGH, Nick said babs resides in the bone marrow as much as 20%, so... And I'm very emotional about this because, without my hyperbaric chamber I am getting very upsetting symptoms, muscle weakness, stiffness, fasciculations etc. I haven't had these in two years and they scare me and I don't know when I'll get my chamber back. I am processing this information, at a bad time. I fear the worst which is that the symptoms will become organic rather than functional, i.e. if I'm without good hyperbaric sessions for a few months etc... I know about the 12 minutes per person. I was complaining to Naomi Remen about this and she said have sympathy, they are told at Kaiser permanente see 40 patients a day or you're fired. So they work 12 hour days. They're encouraged by managed care to do 12 minutes and write out an Rx. That's what they get good feedback for. Oh another thing...Blue Cross Blue Shield, she says, literally and unsentimentally basically fired the workers who refused to refuse longterm abx treatment for suffering lyme patients, and just brought in new workers who would. And one more thing as long as I'm on a rant here. Its partly the responsibility of those who live in the tickinfested hotspots. I was talking to this writer about the cognitive dissonance. I said, a friend of the so-called friend in whose garden I got lyme, bragged a few years back that she and hubby had gotten lyme five times between them and no problem. She acted like my response was weird and unusual (how sick I got). At the same time, she has debilitaitng migraines, has had pain syndromes and been addicted to pain pills, has had two episodes of suicidal depression etc. Now who knows maybe thats lyme unrelated. Maybe she and hubby actually just get over lyme each time. BUT she recently posted that she sees deer now as big rodents, they are everywhere adn unafraid, they cannot keep a garden as the deer eat it all, nobody on her block can picnic on the grass because of lyme, and children are sent out in protective gear if they want to play. Now tell me that's not living in a plague zone. Obviously, this stuff is so upsetting to those who live there that they mostly try to pretend its minor. Even if everybody on their block has something, like bells palsy, m.s., arthritis, wjhatever. They put on a good face to strangers. They wouldn't want real estate values going down now would they. And they also are attached to their beatuiful homes which is understandable. So tehy accept not even being able to fricken walk across their own grass! THey know how bad it is. SO I was talking about that to this writer and she agreed and said, you walk into the bookstore near Lyme CT where Polly (is that her name?) lives. I think that's the one. ANyway a local author who wrote a book about lyme. ANd there are shelves of books by local authors showcased. And the one on lyme is missing. They never carry it. > > > > > > 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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