To me, it's not beyond reason that cycstic fibrosis would respond to diet and lifestyle, and is an understudied phenomenon. I see potential rational caveats, and my guess is that these caveats create some jerky knees among other people who are also suffering (and I'm sure, as a sufferer, you know how emotional the experience dismissal is). A few hypotheses:
- CF responds to diet and lifestyle in some poeple but not others.
- Time spent with the disease and disease progression is a factor on how well it can be managed without medication.
- The above things you mentioned (e.g. you actually have another mimicking condition). If it's something like that, I think you are still operating on good faith and you shouldn't be blown off by other CF sufferers for it... but people are irrational. Don't confuse this with denial, by the way! It's simply a rational possibility.
- The exact *features* of diet and exercise that affect CF aren't well studied/understood and your regiment randomly hits on them. This reminds me of people who feel better eating gluten free that don't have celiac -- eating gluten free is a diet that happens to incidentally eliminate a lot of other food allergens other than gluten. That is, you have a false solution to the problem with real solution hiding in it.
In any case, I've been on the "haters" side re: diet and lifestyle preaching so I can empathize there, too. In particular with chronic migraine, there is a granola crowd who has barely suffered an ailment in their life who suggest that "perhaps a better diet and yoga will help". I've reached a point where I want to slap them sometimes; one of my migraine prodrome symtoms is irraional anger and anxiety, perhaps I will someday :-P
Personally, I wish you the best of luck. I suspect it's statistically likely that you'll depend on pharmacutical intervention someday, hopefully, you can delay that is long as possible. I am by no means anti-pharmacutical, but I know from experience that maintaining a long-term drug regiment has it's own problems.
Fuck chronic illness, raise your hand if you're tired of telling people that your illness won't go away, it can only be "managed". Feel as well as you can.
CF responds to diet and lifestyle in some poeple but not others.
I believe there are around 1600 known alleles -- last I checked. That number may have changed. I am no longer on any CF lists. It's too much drama.
Anyway, the mechanism for CF is a defective cell channel. There are various ways the cell channel can be defective. In some variations, it's outright missing.
To my mind, this is sort of like the difference between albinism and being Caucasian. If you don't have the channel at all, I think that's a completely different and more serious problem than if you have the cell channel, but it's wonky in one of a variety of ways.
Time spent with the disease and disease progression is a factor on how well it can be managed without medication.
This makes it very complicated to talk about. CF causes a compromised immune system and malabsorption. I think most of what most people think of as CF is really severe and chronic malnourishment combined with chronic infection. Those pieces need to be redressed to get healthier. Once redressed, it's vastly easier to manage.
If you are Caucasian, you are at greater risk of sun burn and skin cancer. Imagine a society that called being Caucasian Pale Skin Disorder and dismissed the idea that protecting yourself from the sun mattered. This society lives in, say, Hawaii where the Tropical sun is particularly intense and everyone lives in bathing suits. People with Pale Skin Disorder are chronically severely sunburned. Being chronically severely sunburned has a long list of secondary and tertiary problems associated with it, including high rates of death from skin cancer at an early age.
Someone comes along and says that putting on more clothes or moving someplace where the sun is less harsh can clear up most of those symptoms and give you a nearly normal life with the proviso that even elsewhere you should take reasonable precautions.
Everyone laughs and says "Dumb bitch! Putting on more clothes won't cure cancer!"
The above things you mentioned (e.g. you actually have another mimicking condition). If it's something like that, I think you are still operating on good faith and you shouldn't be blown off by other CF sufferers for it... but people are irrational. Don't confuse this with denial, by the way! It's simply a rational possibility.
My official diagnosis is atypical cystic fibrosis. I've had two or three blood tests for the 100 most common alleles. I don't have any of those.
My doctor requested a more comprehensive and expensive test from Stanford. My insurance company denied the request. They had probably already spent at least $25k on me that year according to conversations I had with my sister who had serious health problems of a different sort, civilian insurance and she works at the CDC. I was a military wife. I saw damn few bills. I mostly flashed my ID card and got it for free.
My doctor diagnosed me on the basis of symptoms and medical history. Based on my lifelong history of respiratory infections etc, he expressed surprise that it took so long to get a diagnosis. He felt the diagnosis was correct because I was responding to treatment.
I was previously misdiagnosed as asthmatic. Articles I've read indicate this is a common misdiagnosis for people with atypical CF, who tend to be treated like a hypochondriac and not get identified until late in life. In a nutshell, that's my story.
My best understanding is that I have all the same issues as someone with classical CF, they are just less severe. So most likely the channel defect I have is relatively moderate.
The fact that I can't name my alleles because my insurance company denied the request for the more comprehensive test is one of the reasons I have no credibility on CF lists. Everyone with CF can name their alleles. Except me. So I must be a fake.
The exact features of diet and exercise that affect CF aren't well studied/understood and your regiment randomly hits on them. This reminds me of people who feel better eating gluten free that don't have celiac -- eating gluten free is a diet that happens to incidentally eliminate a lot of other food allergens other than gluten. That is, you have a false solution to the problem with real solution hiding in it.
Well, I kind of randomly stumbled across stuff that helped, then tried to figure out why it helped. Having a diagnosis of CF was enormously helpful in figuring out why it helped and building on my successes. At this point, I think it's very unlikely that it's "coincidence" that it helps, but really due to some other dynamic.
One example: I used to take $300/mo in supplements. Given my diagnosis and the thousands of dollars a month most people seem to spend on maintenance drugs, I figured that would continue for life. Instead of maintenance drugs, I would have maintenance supplements.
I don't take supplements anymore. I think redressing the severe malnourishment reversed a lot of my symptoms. I also think that the normal progression of CF is rooted in a vicious cycle where chemical derangement of the cell promotes more misfolds of the CFTR. So, the sicker you get, the fewer CFTR channels you have at all. The bottleneck gets narrower and narrower and narrower. The sicker you get, the sicker you get.
Reversing the cell chemistry derangement stops that vicious cycle. I can optimize the number of semifunctional CFTR channels I have, widening the bottleneck.
This is known to help. Some drugs help by increasing the number of CFTR channels you have.
There's actually a fair amount of well known stuff that helps. It's just piecemeal and not promoted by doctors as standard therapy. It gets downplayed.
One thing known to help is MCT oil. This is oil high in medium chain triglycerides. It's typically from Palm oil or coconut oil.
MCT oil or coconut oil is well established as therapeutic for people with serious gut issues, not just CF. I once found medical literature online where it used to be prescribed by doctors for various issues, including stomach cancer.
They frequently prescribe ADEKs, a vitamin containing A, D, E and K. These are all fat soluble vitamins. People with CF are typically chronically short on such vitamins.
(IIRC, ADEKs was actually discontinued. Presumably, there's not enough money in it and it's just a vitamin supplement.)
So we already know people with CF significantly misprocess dietary fats and this has significant health consequences. We just haven't pursued that in earnest as a serious therapeutic approach, probably in part because we don't take diet as seriously as we do prescription drugs and in part because there's no money in giving people a list of beneficial foods and a list of foods to avoid.
One of the most significant changes I made was eliminating peanut oil from my diet. After five years of trying to avoid all peanut products, I was able to reintroduce peanut products back into my diet in small quantities, occasionally. I have to buy the "natural" peanut butter. I can't buy the regular peanut butter. I still avoid peanut oil.
I grew up in Georgia, peanut capital of the known galaxy. A lot of American snack foods are made with peanut oil. Chick-fil-A proudly advertises they use only 100% peanut oil. That was one of my ex husband's favorite eateries. I will not set foot in a Chik-fil-a anymore. Even drinking lemonade or eating salad from there tears up my gut because everything from the place is coated with residue from them cooking on high heat with peanut oil.
Personally, I wish you the best of luck. I suspect it's statistically likely that you'll depend on pharmacutical intervention someday, hopefully, you can delay that is long as possible. I am by no means anti-pharmacutical, but I know from experience that maintaining a long-term drug regiment has it's own problems.
Fuck chronic illness, raise your hand if you're tired of telling people that your illness won't go away, it can only be "managed". Feel as well as you can.