3 ms·

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, thou

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
  Stupidly tossing out a couple of thoughts, in spite of long experience telling me it will most likely not be appreciated. But I am having one of those days and bad habits die hard. Apologies in advance. Celiac causes wheat and dairy intolerance. People with my disorder are at higher than normal risk for also having Celiac. An alternative med group I know of suggests that Celiac has a genetic component but is triggered by metal poisoning -- I mean having active symptoms is triggered by metal poisoning. Chelation makes some sufferers of Celiac asymptomatic. I have not done a formal chelation protocol but I have reason to believe I have reduced the metal load on my system. I tolerate wheat and dairy better than I used to, have improved appetite, and have shrunk dramatically. My hypothesis is that my genetic disorder involves misprocessing metals and thus involves increased vulnerability to metal poisoning. FWIW: People with CF tend to run warm. I do not. I have a long history of being cold natured (including an abnormally low temp when not feverish), something which has improved somewhat with getting healthier. Given that CF is a salt wasting condition and salt changes the boiling and freezing points of water, it kind of makes sense to me that it appears to typically alter normal body temperature. If you wanted my advice, which you most likely don't, I would suggest you get tested for Atypical CF if you haven't been previously and look into the possibility of metal poisoning as a factor. Congrats on your improved health. Best of luck. Apologies for my compulsive helpful streak. I am working on it. I'm just extremely stressed out today. Peace. And thanks for contributing to the conversation.
  - beagle3 14y ago
    > in spite of long experience telling me it will most likely not be appreciated. Much appreciated. My approach to conversations is "hurt me with the truth, never comfort me with lies; tell me all you can, I'll filter it myself". > I have a long history of being cold natured (including an abnormally low temp when not feverish), I do too, actually - that's another thing no "expert" I consulted had anything to comment on (or has even shown interest in), even though this is surely an important marker. > If you wanted my advice, which you most likely don't, I would suggest you get tested for Atypical CF if you haven't been previously and look into the possibility of metal poisoning as a factor. I do want your advice. A quick google, however, did not find a reasonable reference for atypical CF, and since I don't have a sufficiently open minded doctor, I don't think that would work -- could you give more references about the definitions, what tests are involved, and if one can do them privately? > Peace. And thanks for contributing to the conversation. Thank you. And good luck!

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
Stupidly tossing out a couple of thoughts, in spite of long experience telling me it will most likely not be appreciated. But I am having one of those days and bad habits die hard. Apologies in advance. Celiac causes wheat and dairy intolerance. People with my disorder are at higher than normal risk for also having Celiac. An alternative med group I know of suggests that Celiac has a genetic component but is triggered by metal poisoning -- I mean having active symptoms is triggered by metal poisoning. Chelation makes some sufferers of Celiac asymptomatic. I have not done a formal chelation protocol but I have reason to believe I have reduced the metal load on my system. I tolerate wheat and dairy better than I used to, have improved appetite, and have shrunk dramatically. My hypothesis is that my genetic disorder involves misprocessing metals and thus involves increased vulnerability to metal poisoning. FWIW: People with CF tend to run warm. I do not. I have a long history of being cold natured (including an abnormally low temp when not feverish), something which has improved somewhat with getting healthier. Given that CF is a salt wasting condition and salt changes the boiling and freezing points of water, it kind of makes sense to me that it appears to typically alter normal body temperature. If you wanted my advice, which you most likely don't, I would suggest you get tested for Atypical CF if you haven't been previously and look into the possibility of metal poisoning as a factor. Congrats on your improved health. Best of luck. Apologies for my compulsive helpful streak. I am working on it. I'm just extremely stressed out today. Peace. And thanks for contributing to the conversation.
- beagle3 14y ago
  > in spite of long experience telling me it will most likely not be appreciated. Much appreciated. My approach to conversations is "hurt me with the truth, never comfort me with lies; tell me all you can, I'll filter it myself". > I have a long history of being cold natured (including an abnormally low temp when not feverish), I do too, actually - that's another thing no "expert" I consulted had anything to comment on (or has even shown interest in), even though this is surely an important marker. > If you wanted my advice, which you most likely don't, I would suggest you get tested for Atypical CF if you haven't been previously and look into the possibility of metal poisoning as a factor. I do want your advice. A quick google, however, did not find a reasonable reference for atypical CF, and since I don't have a sufficiently open minded doctor, I don't think that would work -- could you give more references about the definitions, what tests are involved, and if one can do them privately? > Peace. And thanks for contributing to the conversation. Thank you. And good luck!