Monday, March 28, 2011

Seeking for alternatives

Today I want to talk about alternative medicine.

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.

Myofascial release. Good stuff.

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.



Anonymous said...

AMEN sister!!! But you do know your kidneys are pretty amazing,right? :)

sostinkinhappy said...

Brilliant, Heather!!!! I think I might print this out and give it to everyone who wants to help "cure" my little guy's Crohns/UC.

You are one smart and talented chica. I am glad that I had the chance to get to know you through that little musical program. :)


Anne said...

nice post Heather. I get these "magical cure" suggestions now and then, having type 1 diabetes. People have learned to stop suggesting them to me, for the most part, because of my not so enthusiastic reception.

I agree that aloe vera is great stuff!

AlisonH said...

Amen, and fervently so.

Yesterday at church I listened patiently as someone in great earnestness tried to prescribe me a clay diet additive, telling me it had antibiotic properties (after badmouthing traditional antibiotics).

I did not tell him that the ethics-free quack who peddles that garbage is banned, name and website, from any comment on my blog and I am not afraid to delete. Not only will I not eat dirt, neither should anyone else and I will not be a party to helping his search results either.

I do appreciate that that fellow yesterday was trying to help. My method is, you get one chance to offer your help like that and let it go. Try a second time and get pushy at me, and I will make my opinion very clear.

Heather O. said...

Anne, my sister (Type I too) gets them all the time, too. It's like people don't get that type I and Type II are different. Although my mom was diagnosed as 'insulin resistant', with an eye toward developing Type II, and she has since lost a bunch of weight, lowered her BP AND cholesterol, and did it (wait for it) by eating like a diabetic--avoiding sugar, white carbs, etc. I think she takes Glucaphage, too, I don't know. She spent years and a lot of money on all kinds of crazy diet things, but in the end, fruits and vegetables, good fat, and regular meals did the trick. Go figure.

Heather B said...

PREACH IT SISTER H!!! The Heathers are in complete agreement. I'm ALL for naturopathic medications IF you know a)what they are and what's in them, abd b)the interactions and c) if NO pyramid Scheme is involved. MLM is NOt healing to anyone, not even the economy (I know, we've talking about this recently, lol...) Realistically, ther ARE great things out there, like peppermint oil (also good for, for some reason, my headaches, and great in cupcakes. That's a multi-purpose essential oil!) and lavender, which really is supposed to have antibacterial properties... and I've used chapstick on a scratch before to magically "heal" it to make a toddler stop crying, and the placebo effect is helpful, too, sometimes. But when people start sticking all kinds of things in thier bodies that they have no idea what they are, just because somebody else said it was good for them... well.....

And I'm going to link to you on my secret blog. But I'm not going to tell you where it is.

Love you dearly-HB

VW: amtoosid. And in, I AM TOO on your SIDE~!!

Heather B said...

Oh, and Allison... did anyone explain to that lady at church the concept of Pica? And that there are nutritionally deficint women in middle america right now who, having no other alternative in their diets, not because they need magic stuff, eat saucers of clay prepared for that purpose in the marketplace, because they need the nutritional opportunites, their own diets being devoid of thos essential minerals? But that, being NOT poverty stricken, we have the chance to get those nutrients from, say, FOOD, or, in the least, prenatal vitamins?

Things I don't miss about being in the "happy Valley," part 1....

Darlene Young said...
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Darlene Young said...

My problem is that I don't know enough and don't know where to look for answers. Like, how did you know that lemon balm inhibits thyroid function? How do you find reliable information that doesn't overwhelm you?

I'm with AlisonH: I don't mind if people suggest it once, but the repeated follow-up and the getting annoyed if I won't try it really bugs me.

Heather O. said...

Darlene, I struggle with that, too. And I'll confess, the lemon balm info came from Wikipedia, when I was researching it after we planted it in our garden. I have a couple of books on herbs, too, which is where I originally found the info about it being used primarily as an antiviral.

My rule of thumb is that I try to find sites (or books) that are neutral about something, like Wikipedia (although I'll admit it's not the best source of info). If it's a site that is promoting a certain product, then the info is going to be only positive, not negative, and I get suspicious. If possible, I try to get sources that cite actual studies, although that's hard, and sometimes I'm too stupid to understand the entire study. The information I got about food and PKD came directly from researchers at the PKD conference, which is a super great resource for PKD patients (and I wish I had unlimited time and money to go to every conference every year).

I also tend to trust things that are open to the general public. Maybe that means I'm putting too much trust in the FDA, but I assume that to be deemed safe or effective, replicable and peer review studies have been done, at least enough to satisfy the certain standards. And I've known enough researchers in my time to know that replicable and reputable studies are the key, and that it's not easy to make that happen. So I am much more likely to trust an OTC substance than something available only through an MLM.

Jean said...

Heather, you are great! Thanks for all of your information and I agree with everything. My husband has PKD, as well as my oldest daughter. Finding kidney friendly menus does mean less protein and more veges and fruits. We do have to check everything from meds to food to see if they can have it and has to be considered all the time. It's a continual learning experience for us too. Best of luck to you!

Jean said...
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Anonymous said...

Ugh! Thanks for writing this. My daughter was born with a genetic disorder that is fatal. Even with a bone marrow transplant, there is only a 14% survival rate. She was started on chemo at 3 months and I had a relative who hounded me constantly saying that we should stop the chemo and just give her breast milk!!! It's GENETIC!!! Oh, and my baby's adopted which means I'm not exactly on the lactating train.