This is my opinion, obviously, so I'm not speaking for any community at large. Just me. But it's been a bee in my bonnet for a while, so here goes.
I think there are a lot of great alternative things out there. For example, I use peppermint oil to help with poison ivy and aloe vera to help with sunburn. I like massage. I even like reflexology, and while I'm not really sure how it works, or even if it DOES work, I like how it feels when people rub my feet.
I believe in acupuncture, though I've never used it personally. When I was struggling with infertility and seeking every thing I could get my hands on, I worked with an "allergy" specialist who did muscle response testing and acupressure to clear my body's energy and make me healthier. Again, I don't know if it worked, but it sure felt good.
I have a friend who thinks lavender is the cure-all. She sprayed some on my son's skinned knee once, saying it has antibiotic properties and pain killers. Spraying lavender on a skinned knee is pretty low stakes, so I let her. I don't know if his knee healed faster than with plain old neosporin, but he stopped crying, and that was good enough for me.
Mostly, though, I believe in food. My infertility and miscarriages ended when I read the book The Schwarzbein Principle. It's the best book about food that I've ever read. She claims that sugar and salt, not fat, is our enemy, and she outlines a healing program, complete with recipes. And her basic premise can be boiled down to this: If you can't pick it, fish it, pluck it, or hunt it (at least theoretically), you shouldn't eat it. Basically, if you have to open a box or a can before you start eating, you are eating the wrong food.
I followed her healing program (which consists of eating, you know, crazy things like lots of fresh vegetables and dishes made from scratch), and within 2 months I was pregnant. My conclusion is that food is a powerful, powerful drug.
So I'm down with looking outside the box to improve health. A friend of mine posted a picture of a red velvet cake made with pureed beets instead of 2 bottles of red dye, which I thought was FABulous. And if you want to go on a spinach juice fast, be my guest.
My issue, though, comes when people offer me things that they think will help with PKD when they themselves are ignorant about both PKD and the product they are recommending. I listened to a woman recently talk about some drops she has that could help cure another friend's hay fever. "What's in the drops?" I asked, because hey, I have hay fever, and I'd love a cure.
She didn't know.
She couldn't tell me one ingredient.
So, in essence, she was advising a friend to take something into her body when she herself had NO IDEA WHAT IT WAS. And this friend has some pretty intense health issues of her own and is on some pretty heavy duty medication, and there was no knowing how these drops could interact with those medications, because the person RECOMMENDING the drops couldn't tell her what they were.
This is reckless behavior. And it bothers me.
I am often approached by people who think they have the answer for me and my family, people who often have never heard of PKD, but have had awesome results with product X, and they want to share. They are well-meaning, and I appreciate the thought.
But here's the problem. My body is not like their bodies. I am a unique person, with a unique make-up, just as all of us are unique. More importantly, however, I have compromised kidneys. I want to ask these people, Are you positive that whatever you are going to give me is going to interact well with my polycystic kidneys (which are not the same as kidneys affected by diabetes, or infection, or any of the dozens of other reason kidneys fail.)? How will it interact with my current medications? With nothing but vague claims posted by vague sources on the internet and personal anecdotal evidence, are you willing to stake my life on the benefits of this product?
You may be. I am not.
And that's what gets me--the higher the stakes, the more crazy the claims. It's like we are all so desperate to find something that will fix everything, we start making things up. Like the magic elixer of Nicholas Flamel, we want to find something that gives us the answer to heal us.
But nobody really knows the answer. Even top researchers in this field disagree how best to heal PKD. The CRISP study was interesting to read, and even more interesting found that decrease in protein intake did not directly affect the ultimate outcome of renal failure. But Dr. Steinman says in his (anecdotal) experience, vegetarians just do better over the course of the disease. I went vegetarian, then asked a dietitian about it, and she said that Dr. Steinman's observations could be contributed not to a decrease in protein, but to an increase in the use of fruits and vegetables. So it seems that having an extra cup of broccoli is better than cutting out the burger.
I've seen a lot about the use of an alkaline diet for patients with PKD, and there was a debate about that at the PKD conference, too. The dietitian who was there said that an alkaline diet is a pretty healthy way to go, but then one of the doctors said that the initial studies they did in animal trials with an alkaline diet weren't promising. So even TOP PEOPLE who are doing CUTTING EDGE research aren't exactly sure what we're supposed to eat. The only thing they have come up with is that eating a lot of fruits and vegetables is good for you.
I'll keep putting peppermint on my poison ivy and aloe vera on my sunburn. I'll even make lemon balm tea from my garden, because lemon balm is supposed to have antiviral properties and I've got a nasty cold. But I also know enough that even something as mild as lemon balm shouldn't be given to my friend on thyroid medication, because it inhibits the absorption of Thyroxine. See? Herbs can do more than just make things all better. They are drugs in and of themselves, which means that just because it's natural doesn't mean it's safe.
So until you can tell me EXACTLY how what you're giving me is going to interact with my meds and my kidneys, HOW it will lower my BP (BP is controlled by more than just one thing in the body, multiple feedback systems with multiple hormones), and how it will interact with those huge cysts that are caused by a GENETIC disease (not environmental, not hormonal, not bacterial or viral--it's in the very fabric of my DNA), I'll ask that you just leave me to my lemon balm and fresh veggies.
Wow. I too live with PKD and I applaud your own strength in acceptance or NOT of help and healthcare. It's a challenge to endure and I doubt I know as much as you but I DOknow I always do better and feel better when I have more fresh fruits and veggies. Keep on keepin on! :)