4 ms·

I don't know who you are, and have never read anything you have written before. I thought I'd take the opportunity to reply to my initial opinion of your messa

I don't know who you are, and have never read anything you have written before. I thought I'd take the opportunity to reply to my initial opinion of your message. Your problem is that your message reads a lot like "I cured a horrible disease (I don't know what you had), which modern medicine failed to cure, by eating at good restaurants". Your problem is that this message sounds very close to the anti-modern medicine claims of groups like homeopaths. I do not know what your cure is, but trying to work with, rather than (apparently) against modern science-based medicine might help. Apologises if this message just ends up telling you nothing, or something you have heard too many time before.

Mz 14y ago
Thank you for replying. I struggle with how to talk about what I have done. There is a substantial difference between my framing of the problem and the way others frame it. I did mention my condition but only in shorthand. I have CF -- cystic fibrosis -- a deadly genetic disorder which accounts for around a third of all adult lung transplants and half of all pediatric lung transplants in the US. What I found is that life is chemistry. Everything we eat, drink, breathe or touch impacts our biochemistry and what germs we are exposed to and so on. Making many small choices throughout the day has a cumulative impact on body chemistry. I was able to reverse the pathology of my condition and make my body work closer to normal. Dietary changes were a big part of that but far from "everything". Getting myself well took everything I had. I ended up deeply in debt because of it. I am currently homeless, trying to declare bankruptcy and trying to figure how to make money online so I can stay well. Having a desk job in an industrial park was part of what was keeping me ill. Anyway, I hope that is a little clearer for you. My real message was intended to be that taking care of problems while they are small is more effective at really fixing things than hunting for big, dramatic ego boosting solutions. Doctors pay little attention to nutrition for people like me, though it makes a big difference in outcomes. Lung transplants grab more headlines and glory than trying to help people keep their own lungs functional and healthy. Peace.
- CJefferson 14y ago
  Thanks for your reply, I agree with, and am interested in, what you say. Just want comment: "Doctors pay little attention to nutrition for people like me, though it makes a big difference in outcomes. Lung transplants grab more headlines and glory than trying to help people keep their own lungs functional and healthy.". While I realise you might have had bad experiences, I know lots of medical researchers who are dedicating their lives to trying to cure disease, in any way possible. Many doctors would be very interested in proving how diet can help disease, and doing so.
  - Mz 14y ago
    I did run into someone once on HN whose SO was doing nutritional research on my condition. So I hope it gets better. Unfortunately, the current state of the art for CF treatment in the US suggests a "high fat, high salt, high calorie" diet. This results in medical teams actively encouraging a junk food diet. My oldest son also has CF. When he lost five pounds, his clinic treated it like a crisis and at their encouragement I put a big bowl of chocolates and other crap on the coffee table and encouraged him to snack. After he gained back about 2.5 pounds and his clinic got off our backs and quit sounding like they might report me to social services if he didn't gain weight to their satisfaction, we returned home and he promptly handed me the bowl and announced "We are never doing this again. I feel like crap." We have since worked on "eating right", largely the opposite of the junk food diet currently advocated by CF teams. Ten years later, we are both drug free and the healthiest we have ever been. The hole in my left lung is gone. And so forth.
  - beagle3 14y ago
    > While I realise you might have had bad experiences, Chiming in on bad experience: Thankfully, I don't have CF or anything of the sort; I just appear to be statistically improbable. On way too many medical diagnostics, I'm in the 1% of the scale -- though everything about me seems normal. Except weight; I used to be 100kg (220 lbs) on a 5'11" (1.78m) frame. Full, but not overly obese or really fat. But I was on a 800-100 calorie diet for years at that point. (Not because of trying to lose weight; I just didn't have the appetite, and would go days, and in a few cases, weeks, without eating anything). I had responses similar to those described by Mz from practitioners - I've paid good money to consult with many, supposedly expert and the best around -- disbelief and general disinterest. And then I became (mostly) normal by cutting out wheat. This was met by "oh, that's interesting" and "oh, that's psychosomatic" (Because the standard wheat allergy test came up negative), and general disinterest. I'm eating a lot more now (wheat excluded), and am down to 80-85kg range. There's still a lot about me that is statistically improbable, including body temperature. I'm sure it's all related, but I can't find a medical researcher who cares, so I have to do my own "research". > Many doctors would be very interested in proving how diet can help disease, and doing so. I would be happy to meet those doctors. In my experience, however, they turn into your standard everyday doctor somewhere between the 3rd year of med school and the end of their internship.

Mz 14y ago

Thank you for replying. I struggle with how to talk about what I have done. There is a substantial difference between my framing of the problem and the way others frame it. I did mention my condition but only in shorthand. I have CF -- cystic fibrosis -- a deadly genetic disorder which accounts for around a third of all adult lung transplants and half of all pediatric lung transplants in the US. What I found is that life is chemistry. Everything we eat, drink, breathe or touch impacts our biochemistry and what germs we are exposed to and so on. Making many small choices throughout the day has a cumulative impact on body chemistry. I was able to reverse the pathology of my condition and make my body work closer to normal. Dietary changes were a big part of that but far from "everything". Getting myself well took everything I had. I ended up deeply in debt because of it. I am currently homeless, trying to declare bankruptcy and trying to figure how to make money online so I can stay well. Having a desk job in an industrial park was part of what was keeping me ill. Anyway, I hope that is a little clearer for you. My real message was intended to be that taking care of problems while they are small is more effective at really fixing things than hunting for big, dramatic ego boosting solutions. Doctors pay little attention to nutrition for people like me, though it makes a big difference in outcomes. Lung transplants grab more headlines and glory than trying to help people keep their own lungs functional and healthy. Peace.

CJefferson 14y ago
Thanks for your reply, I agree with, and am interested in, what you say. Just want comment: "Doctors pay little attention to nutrition for people like me, though it makes a big difference in outcomes. Lung transplants grab more headlines and glory than trying to help people keep their own lungs functional and healthy.". While I realise you might have had bad experiences, I know lots of medical researchers who are dedicating their lives to trying to cure disease, in any way possible. Many doctors would be very interested in proving how diet can help disease, and doing so.
- Mz 14y ago
  I did run into someone once on HN whose SO was doing nutritional research on my condition. So I hope it gets better. Unfortunately, the current state of the art for CF treatment in the US suggests a "high fat, high salt, high calorie" diet. This results in medical teams actively encouraging a junk food diet. My oldest son also has CF. When he lost five pounds, his clinic treated it like a crisis and at their encouragement I put a big bowl of chocolates and other crap on the coffee table and encouraged him to snack. After he gained back about 2.5 pounds and his clinic got off our backs and quit sounding like they might report me to social services if he didn't gain weight to their satisfaction, we returned home and he promptly handed me the bowl and announced "We are never doing this again. I feel like crap." We have since worked on "eating right", largely the opposite of the junk food diet currently advocated by CF teams. Ten years later, we are both drug free and the healthiest we have ever been. The hole in my left lung is gone. And so forth.
- beagle3 14y ago
  > While I realise you might have had bad experiences, Chiming in on bad experience: Thankfully, I don't have CF or anything of the sort; I just appear to be statistically improbable. On way too many medical diagnostics, I'm in the 1% of the scale -- though everything about me seems normal. Except weight; I used to be 100kg (220 lbs) on a 5'11" (1.78m) frame. Full, but not overly obese or really fat. But I was on a 800-100 calorie diet for years at that point. (Not because of trying to lose weight; I just didn't have the appetite, and would go days, and in a few cases, weeks, without eating anything). I had responses similar to those described by Mz from practitioners - I've paid good money to consult with many, supposedly expert and the best around -- disbelief and general disinterest. And then I became (mostly) normal by cutting out wheat. This was met by "oh, that's interesting" and "oh, that's psychosomatic" (Because the standard wheat allergy test came up negative), and general disinterest. I'm eating a lot more now (wheat excluded), and am down to 80-85kg range. There's still a lot about me that is statistically improbable, including body temperature. I'm sure it's all related, but I can't find a medical researcher who cares, so I have to do my own "research". > Many doctors would be very interested in proving how diet can help disease, and doing so. I would be happy to meet those doctors. In my experience, however, they turn into your standard everyday doctor somewhere between the 3rd year of med school and the end of their internship.