3 ms·

talking doctors into giving me certain antibiotics a former homemaker can't possibly understand anything about health that doctors and scientists can't

by saulrh 8y ago

talking doctors into giving me certain antibiotics a former homemaker can't possibly understand anything about health that doctors and scientists can't figure out, no. sigh. Publish a case study. Please. I beg you. The people that went into the "people don't get better from this" statistic did not just all lay down and die. I guarantee you they went home and searched for a cure the same way you did. But they aren't here and you are. Normally I'd say you were lucky, but you claim a testable hypothesis that made sense to an MD and then worked. And you seem rational enough that I don't think you'd be giving "specific therapies" so much credit if they hadn't made the difference. And you know what we call alternative medicine with testable hypotheses that made sense to an MD and were then proven to work? "Medicine". We went back to leeches and maggots and poop transplants because someone proved that they work. But someone had to prove it. Someone had to brainstorm the principled explanation, someone had to write it down, someone had to add it to the standard, indexed, well-known and searchable body of knowledge. Because there are not enough doctors in the world for them to spend hundreds of hours researching each edge case when they're already massively overworked by the hour per kid it takes to stave off MMR and tetanus and pertussis. It needs to be indexed and searchable, it needs to be in the knowledge base, it needs to be standard. Getting better from things that "people don't get better from" is by definition novel. Solving something that's common enough to have statistics is similarly valuable. A doctor friend's name will get you past the bigots and a publication will be worth his time. You claim a hypothesis, a principled explanation, and a measure of peer review, so you're good on the fundamentals. If you lead with a technical root-cause analysis and reveal your "specific therapies" with a dramatic flourish you'll even turn the "tall tales" into bonus points for creativity and some word-of-mouth publicity. Your case is entirely publishable. So prove me wrong. Please. "That which can be destroyed by the truth should be destroyed by the truth." Publish it. Save the lives of all the future people that'll get something that "people don't get better from". If you're right about cinnamon and oregano, contribute some good hard evidence and help bring general beliefs into better alignment with reality, which'll save more lives than just the people that share your exact epidemiology. Strike that "alternative" off the medicine that healed you. I'd damn sure like to live forever and any claim that reproduces can help me do that. Bring everyone up to your level instead of sneering down your nose while handing the antivaxxers ammunition.

DoreenMichele 8y ago
I've been doing this about 18 years. I'm no longer friends with said MD. The piece he said made sense: I figured my husband brought a parasitic infection back from Saudi, a class of trypanosoma, and was reinfecting me every time we has sex and this was why it didn't matter how many antibiotics I took. I was constantly being reinfected. So I told my husband "you are never touching me again without a condom" and I stabilized in two weeks. Then I began asking for standard CF antibiotics that are fairly strong but don't have side effects like "kills some percentage of people." I managed to get on zithromax maintenance therapy, a standard treatment for CF. It has a long half life. So I was on it like two weeks out of the month or something and it's good for like another ten days after the final dose. So I essentially had antibiotics in my system all the time, all but maybe four days a month. Then a med student at the teaching hospital that I had good rapport with put me on Levaquin, another fairly strong but doesn't routinely kill people drug that is commonly prescribed for CF. After that, I mostly went back to needing antibiotics during stress times, like midterms, finals, Christmas. That was my normal for much of my life. CF doesn't actually make you sick per se. It causes a bottle neck in the processing of certain molecules due to a defective cell channel. Lots of secondary and tertiary and fourth order consequences grow out of that. I got extremely interested in what do we know about what happens at the cellular level. I talked to a guy with a PhD in Chemistry. I talked to a guy with a PhD in Biology. I asked a lot of questions of a former RN and she told me "You are asking things they don't have answers for. They don't actually know what that drug does at the cellular level." It's been a long journey and I'm still struggling to survive financially. I've had multiple blogs where I've tried to find the words to express some of it, but I have no audience, I can get no traction. That means I get no feedback for what makes sense to people and what doesn't. I'm not sneering down my nose at anyone. I've been thrown off of multiple forums. I've been subjected to really ugly personal attacks. Mods on most forums will not protect me. They tell me I'm the problem and the people attacking me are fine and I need to STFU. So, you know, right after I win the lottery or marry a millionaire I'll get on some attempt to publish something for some internet stranger who initially told me to go kill myself. Sure. Cuz I owe you so fucking much. Meanwhile, I'm still struggling to make ends meet and try to eat everyday. And that's where my focus needs to remain for the time being because most of the world quite seriously wishes I would drop dead in earnest and has been actively trying to help make sure I die instead of merely being a flippant and lousy argument tactic.

by saulrh 8y ago

DoreenMichele 8y ago

I've been doing this about 18 years. I'm no longer friends with said MD. The piece he said made sense: I figured my husband brought a parasitic infection back from Saudi, a class of trypanosoma, and was reinfecting me every time we has sex and this was why it didn't matter how many antibiotics I took. I was constantly being reinfected. So I told my husband "you are never touching me again without a condom" and I stabilized in two weeks. Then I began asking for standard CF antibiotics that are fairly strong but don't have side effects like "kills some percentage of people." I managed to get on zithromax maintenance therapy, a standard treatment for CF. It has a long half life. So I was on it like two weeks out of the month or something and it's good for like another ten days after the final dose. So I essentially had antibiotics in my system all the time, all but maybe four days a month. Then a med student at the teaching hospital that I had good rapport with put me on Levaquin, another fairly strong but doesn't routinely kill people drug that is commonly prescribed for CF. After that, I mostly went back to needing antibiotics during stress times, like midterms, finals, Christmas. That was my normal for much of my life. CF doesn't actually make you sick per se. It causes a bottle neck in the processing of certain molecules due to a defective cell channel. Lots of secondary and tertiary and fourth order consequences grow out of that. I got extremely interested in what do we know about what happens at the cellular level. I talked to a guy with a PhD in Chemistry. I talked to a guy with a PhD in Biology. I asked a lot of questions of a former RN and she told me "You are asking things they don't have answers for. They don't actually know what that drug does at the cellular level." It's been a long journey and I'm still struggling to survive financially. I've had multiple blogs where I've tried to find the words to express some of it, but I have no audience, I can get no traction. That means I get no feedback for what makes sense to people and what doesn't. I'm not sneering down my nose at anyone. I've been thrown off of multiple forums. I've been subjected to really ugly personal attacks. Mods on most forums will not protect me. They tell me I'm the problem and the people attacking me are fine and I need to STFU. So, you know, right after I win the lottery or marry a millionaire I'll get on some attempt to publish something for some internet stranger who initially told me to go kill myself. Sure. Cuz I owe you so fucking much. Meanwhile, I'm still struggling to make ends meet and try to eat everyday. And that's where my focus needs to remain for the time being because most of the world quite seriously wishes I would drop dead in earnest and has been actively trying to help make sure I die instead of merely being a flippant and lousy argument tactic.