4 ms·

How and from what (if it's ok to ask)

by trapper 17y ago

Mz 17y ago
What: After spending 3 1/2 months bedridden, I was diagnosed in May 2001 with "atypical cystic fibrosis" in my mid-thirties. Doctors blamed my condition on my genes. I figured there had to be more to it than that. How: I have a small website that attempts to answer that question: http://www.healthgazelle.com http://www.healthgazelle.com To sum up my point of view: White people are more vulnerable to sunburn than darker-skinned people but "pale skin disorder" does not doom you to be chronically sunburned to the point of peeling and does not doom you to die at an early age of skin cancer. Similarly, cystic fibrosis makes one more vulnerable to infection, but one does not have to accept being sick all the time as their only fate. It takes both pale skin and sunlight to cause sunburn. It takes both CF and germs to make one deathly ill. The environmental and lifestyle part is what we can control. So far, so good.
- jackchristopher 17y ago
  Have you looked into healthy fats? My skin likes pastured (grass fed) butter, coconut milk/oil and very dark chocolate. Vitamins D3 and a DHA & EPA (Omega 3s) source like fish (krill oil) should do the skin well too. Also green and white tea w/ lemon no sugar killed acne. Favorite health blog: wholehealthsource.blogspot.com
  - Mz 17y ago
    I do a lot of organic butter and coconut oil. I talk about that on the site. It's not the only thing I focus on, but it is one of the things that has been helpful.
- trapper 17y ago
  I'm all for patient heal thyself. But, I think you should tone down the conspiracy theory style of your site. Doctors aren't all bad - far from it. The medical profession is trying to help, but in an evidence based way. You may not agree, but that's what the status quo is. It's not evil - it's the only sane way to progress. If you think you know better than the current literature, get someone to research it. Go talk to your local university, get someone excited. Or do it yourself during a summer scholarship. If you are right and can prove it you'll help a lot more people.
  - Mz 17y ago
    Some of that is humor. At some point, I imagine the front page will change. As far as I know, that's the only place where I (jokingly) comment in a conspiracy theory style. But the reality is also that most CF patients are prisoners of the mental models used by medicine. Ex: Zithromax is very commonly prescribed as a prophylactic antibiotic and to control inflammation. It also competes with magnesium. So taking zithromax tends to make one magnesium deficient. Magnesium is an alkaline mineral. Thus magnesium deficiency leads to excess acidity, which leads to inflammation, which promotes infection, for which doctors then prescribe drugs like zithromax. It's a vicious cycle: Once you start taking zithromax, you tend to become dependent upon it because it worsens the underlying issues which cause the thing it is treating for. Most doctors seem to be completely unaware of stuff like that. I have never had a doctor tell me what nutritional supplements I needed to take or what foods I needed to eat to combat the side effects the drugs cause. Getting off the 8 or so prescription drugs I used to take has made me feel strongly that the solutions doctors prescribe -- and which most patients blindly and obediently follow to a T -- are part of the problem. I wish the picture were prettier. But my CF specialist expressed zero interest in what I was doing to get myself well. His response to my improvement was to schedule me fewer appointments because other patients needed his help more. If anyone is going to get well using the information on the site, it will be a grass roots movement. Doing some kind of research on it when it is already helping people (me, my son, others with CF that contact my via email) looks to me like a huge waste of time -- kind of like a recent article about avoiding spending undue amounts of time writing your business plan. Thanks for the feedback. I will make a mental note of it for future reference as the site gets improved. :-)
    - trapper 17y ago
      I gathered you must have had some bad experiences with your own doctors. That's unfortunate. There are drug guidelines for a reason: they are evidence based on the current literature. Of course they follow the path with the most evidence behind it. My take would simply be collect some evidence. Then get someone excited. Someone wants to make their mark - this would be a relatively simple study if what you say is repeatable amongst the general CF population.

How and from what (if it's ok to ask)

by trapper 17y ago

How and from what (if it's ok to ask)

Mz 17y ago

What: After spending 3 1/2 months bedridden, I was diagnosed in May 2001 with "atypical cystic fibrosis" in my mid-thirties. Doctors blamed my condition on my genes. I figured there had to be more to it than that. How: I have a small website that attempts to answer that question: http://www.healthgazelle.com http://www.healthgazelle.com To sum up my point of view: White people are more vulnerable to sunburn than darker-skinned people but "pale skin disorder" does not doom you to be chronically sunburned to the point of peeling and does not doom you to die at an early age of skin cancer. Similarly, cystic fibrosis makes one more vulnerable to infection, but one does not have to accept being sick all the time as their only fate. It takes both pale skin and sunlight to cause sunburn. It takes both CF and germs to make one deathly ill. The environmental and lifestyle part is what we can control. So far, so good.

jackchristopher 17y ago
Have you looked into healthy fats? My skin likes pastured (grass fed) butter, coconut milk/oil and very dark chocolate. Vitamins D3 and a DHA & EPA (Omega 3s) source like fish (krill oil) should do the skin well too. Also green and white tea w/ lemon no sugar killed acne. Favorite health blog: wholehealthsource.blogspot.com
- Mz 17y ago
  I do a lot of organic butter and coconut oil. I talk about that on the site. It's not the only thing I focus on, but it is one of the things that has been helpful.
trapper 17y ago
I'm all for patient heal thyself. But, I think you should tone down the conspiracy theory style of your site. Doctors aren't all bad - far from it. The medical profession is trying to help, but in an evidence based way. You may not agree, but that's what the status quo is. It's not evil - it's the only sane way to progress. If you think you know better than the current literature, get someone to research it. Go talk to your local university, get someone excited. Or do it yourself during a summer scholarship. If you are right and can prove it you'll help a lot more people.
- Mz 17y ago
  Some of that is humor. At some point, I imagine the front page will change. As far as I know, that's the only place where I (jokingly) comment in a conspiracy theory style. But the reality is also that most CF patients are prisoners of the mental models used by medicine. Ex: Zithromax is very commonly prescribed as a prophylactic antibiotic and to control inflammation. It also competes with magnesium. So taking zithromax tends to make one magnesium deficient. Magnesium is an alkaline mineral. Thus magnesium deficiency leads to excess acidity, which leads to inflammation, which promotes infection, for which doctors then prescribe drugs like zithromax. It's a vicious cycle: Once you start taking zithromax, you tend to become dependent upon it because it worsens the underlying issues which cause the thing it is treating for. Most doctors seem to be completely unaware of stuff like that. I have never had a doctor tell me what nutritional supplements I needed to take or what foods I needed to eat to combat the side effects the drugs cause. Getting off the 8 or so prescription drugs I used to take has made me feel strongly that the solutions doctors prescribe -- and which most patients blindly and obediently follow to a T -- are part of the problem. I wish the picture were prettier. But my CF specialist expressed zero interest in what I was doing to get myself well. His response to my improvement was to schedule me fewer appointments because other patients needed his help more. If anyone is going to get well using the information on the site, it will be a grass roots movement. Doing some kind of research on it when it is already helping people (me, my son, others with CF that contact my via email) looks to me like a huge waste of time -- kind of like a recent article about avoiding spending undue amounts of time writing your business plan. Thanks for the feedback. I will make a mental note of it for future reference as the site gets improved. :-)
  - trapper 17y ago
    I gathered you must have had some bad experiences with your own doctors. That's unfortunate. There are drug guidelines for a reason: they are evidence based on the current literature. Of course they follow the path with the most evidence behind it. My take would simply be collect some evidence. Then get someone excited. Someone wants to make their mark - this would be a relatively simple study if what you say is repeatable amongst the general CF population.