Comment by Mz | Hacker News Reader

Comment by Mz | Hacker News Reader

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3. They do enormous amounts of research and are very devoted parents who keep their kids healthy without prescription drugs or vaccines. They use diet, lifestyle changes and herbs/supplements (which are very respected in some "traditional" medicines) in place of what conventional/modern doctors would do to kids.

I have a form of cystic fibrosis (as does my 23 year old son). I have gotten off 8 or 9 prescription drugs and gotten me and my kids healthier. A great deal of what I know about getting healthy I learned from an anti-vax/alternative health board that believes that vaccines and other sources of metal poisoning cause autism (and related disorders). (EDIT: I don't think it's quite that simple, but I do think that is certainly a factor.) Both my sons fit the profile for ASD. Getting the three of us healthier has dramatically reduced their ASD symptoms. My son with cystic fibrosis has not been on antibiotics for over 12 years -- more than half his life -- and has taken no medication whatsoever in about 4 years. Most people with CF take hundreds or thousands of dollars worth of "maintenance drugs" every month, more when they are "sick" (having an exacerbation).

Most people with my genetic disorder get flu vaccines and pneumonia vaccines and other vaccines religiously. And they get gradually sicker and sicker until they die, usually at tragically young ages. I get a lot of flack off of people in the CF community for advocating non-drug approaches to the problem. I also get treated like I am some kind of irresponsible fruitcake and bad mother because none of us has seen a doctor in several years. We haven't seen a doctor because a) we aren't "sick" like we used to be and b) no doctor can help me improve on my track record of success. Doctors told me flat out to my face "people like you don't get well -- symptom management is the name of the game". I beg to differ.

Thank you for your reasonable reply.

Peace.

Wow downvotes? I don't agree with most of this position but this viewpoint is while an anecdote and not based solidly in science is valid. Certainly a healthy balanced diet creates a healthier body and something everyone should implement whether they are managing a chronic illness or not.

I don't agree with not vaccinating as a general rule, but I am not overly familiar with cystic fibrosis so I am not aware of what risks sufferers have and what medications sufferers are asked to use. Certainly this is still relying on heard immunity for things like measles, mumps, polio and the like. Healthy living does not prevent these diseases.

Could you describe why you chose not to vaccinate for anything?

Another position I will agree with, though it is only implied in the comment is doctors seem to over prescribe medication. Whether it is a desire to help, or be seen to do something or just laziness to get onto the golf course. Certainly I have seen this anecdotally, I am often offered antibiotics when I don't really need them. Things like presenting with flu symptoms and being given a script to prevent a throat infection.

Could you describe why you chose not to vaccinate for anything?

:-) Wildly inaccurate assumption. :-)

My oldest son is fully vaccinated. I was diagnosed with CF in May 2001, just before I turned 36. My oldest son was diagnosed the following month, shortly after turning 14. (He was born the day after my 22nd birthday. My youngest was born on my 5th wedding anniversary. When I was married, I went around telling everyone my husband was too cheap to buy me anything. <wink>)

When I was first diagnosed, it was after having been bedridden for 3 1/2 months, after 10 weeks of sinusitis turned to pneumonia. The first few years, I got my flu shot every year. My then teenaged son refused his and was very adamant that he would rather have the flu than the flu shot. I was very slow to join the anti-vax crowd and I don't promote it as a position. But I did eventually stop getting my annual flu shot and my youngest son never got the last of his vaccinations. The reason I stopped getting my vaccinations: Absolutely everyone (including my oldest son) who was helping me get well when most of the wold insisted it couldn't be done were strongly anti-vax. No on tried to talk me out of it. But I eventually decided to skip the shot and see if I did better. I haven't gone back.

As for doctors over-prescribing medicine: I think that bias is built in to the way they are compensated. Drugs offer short-term gains with long-term consequences. The doctors can claim credit for the short-term gains while distancing themselves from the long-term negative consequences and not really owning that -- even though it isn't at all secret and everyone in the CF community refers to drug side effects as "a necessary evil". If you are basically healthy, you can do this to yourself occasionally and it isn't necessarily a big deal. But if you have a chronic, deadly condition, it helps to put you in the grave and you cannot prove it. All the experts blame your genes, there aren't really big samples of groups of people successfully doing something else (just a few "anecdotal"/lone nutcases like me), and doing nothing (which is what people seem to think I am doing) does in fact kill you if you have CF.

As for diet and lifestyle: Life is chemistry. Everything you eat, drink or touch impacts your body chemistry to some small degree. If you are willing to do enough research and make enough changes, the chemical impact is greater than what drugs do to the body. But it's hard to sell people on that. <shrug>

Thanks for your reply.

Would you immunize yourself or your children for things like MMR now?

I think science and doctors are getting better at studying the holistic approach you talk about, and some things will be born out by the facts and others won't. I am glad things are working for you and your family, and certainly I would contend that a sufferer of a disease like CF is a someone who can rely on herd immunity and boost their immune systems in other ways, and not draw critizim for doing so.

Certainly what you eat has an a large impact, but the complexity of our bodies is such that it is very difficult to draw conclusions on what helps people or not.

I strongly disagree with "the chemical impact is greater than what drugs do to the body". If your diet is lacking in vitamin c does getting the vitamin from an supplement (in "drug" form if you like) have a greater effect that getting it from an orange I think you would agree not and I would say it is the same. (I am using vitamin C here as the supplement/drug because it has been shown to be taken up by the body just as effectively in both forms.

Would you immunize yourself or your children for things like MMR now?

My sons are both legal adults, so it is no longer my decision to make for them. I don't have plans/expectations to have more kids. I would be very reluctant to get anymore vaccinations. I have done better without them. So far, I haven't really had to make any decisions regarding some "position" along those lines. I don't recall the last time I had the flu or a cold. I think the things we are doing does provide protection from infection, but you have to stay on top of it. It isn't a nice simple "do it once" solution -- but those solutions weren't working for me anyway.

I took quite a lot of supplements for a long time. I take very few these days. I think it is better to get it from food, if possible. If you do the research, you find, for example, that magnesium is best absorbed when taken with calcium and calcium is best absorbed when taken with a few other things. I think there are also micronutrients in food that have yet to be adequately cataloged and studied. So I think food is, generally speaking, a superior means to get what we need because we can't replicate the complexity of food with our supplements, though supplements definitely had their place for a long time for me while I was trying to undo decades of damage and it simply wasn't possible to get the high doses of nutrients I needed from food alone.

Do you have any lifestyle/diet resources you can point me to?

I have a website where I talk a little about things I've done. There are some links on it to other resources. The link to it is in my profile (the one with "health" in the name). If you have some specific issue you are trying to address, you can write me privately and I can try to make some suggestions/give some pointers.

Perhaps I'm misinformed, but my understanding is that CF is generally detectable early on - most CF kids born before the 20th century didn't last much longer than a year.

Is it possible yours is just an unusually mild case?

Yes I have a "mild case". Though "mild" is a political hot button in the CF community and the phrase "mild CF" can get you lynched in some crowds. The PC term is "atypical CF". Just as they first recognized "classic Kanner's syndrome" as the only form of autism and now recognize a variety of less severe issues as part of "autism spectrum disorder", they also now recognize less severe forms of CF. That certainly contributes to how long I have lived but it does nothing to explain how I came back from death's door.

You are not really presenting any evidence, especially evidence particular to vaccines and autism. It doesn’t matter how nice and great the alternative health board is if they can’t muster satisfactory evidence.

I would also think that if what you say is indeed true, many scientists would be very interested in your case.

You are not really presenting any evidence, especially evidence particular to vaccines and autism. It doesn’t matter how nice and great the alternative health board is if they can’t muster satisfactory evidence.

I was not offering to give evidence particular to vaccines and autism. I don't even believe that vaccines directly and solely cause autism. (I do believe they are a contributing factor but I think it's more complicated than the two sides want to make it out to be.) I was only suggesting that the two possible characterizations being listed for parents who are anti-vax were not the only two possibilities.

I would also think that if what you say is indeed true, many scientists would be very interested in your case.

You would think so. But my doctor's reaction to me getting healthier was to schedule me with fewer and fewer appointments on the theory that I didn't really need his attention and other patients needed him more, while expressing zero interest in how I was getting well, even though he was clear it was something I was doing, not something he was doing. (This is another reason I haven't seen a doctor recently: My experience is doctors don't really want to hear what I have to say and the only thing they can offer me is drugs, which I have worked extremely hard to get off of and plan to stay off of.)

Some debates cannot be solved by looking at the positions of both sides and picking the middle (though that sure would be nice and simple) and a MD is not a scientist (doing basic research probably won’t make her or him money, it’s not an effective use of her or his time).

A) I don't think I'm picking the middle. I'm saying most things aren't as simple as black or white arguments would like to make them be.

B) No, an MD is not a scientist. I have a website, have had it for a few years. Very few people of any sort have expressed any interest in it whatsoever. I'm not holding my breathe. I don't expect it to catch on.

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