Wednesday, October 14, 2009

Alternative Medicine Blogger Challenge

The following is a recent email exchange between one of the readers of this blog and me about my last post. It gets a little long, but I wanted to post this because I think it offers a great perspective on the question of "alternative" medicine and the treatment of CF, particularly because Jason is a CF parent. Enjoy (and ps: read the first-ever aMoLaB "blogger challenge" at the end!):

I just found your blog recently. I have to say that your post excites me. To explain, I'll try to be brief, but I am never brief when explaining, and certainly not on a topic like this.

I grew up with an entrepreneurial, businessman, workaholic father and a stay at home mother. They were republicans. I am conservative politically, undoubtedly influenced by them. Conservative influence #1.

I have a master's degree in psychology, from a school with a behavioral perspective. That's the branch of psychology that is the most scientific. It's the if-you-can't-prove-it-with-empirical-research-then-it-ain't-so kind of psychology. None of that Freudian crap. My minor in college was biology. Conservative influence #2

At some point, after grad school, I gave my spiritual interests serious consideration and ultimately became a Christian. Conservative influence #3.

I am married to a Christian woman from a Christian family, whose mother works at the church where we attend, running the children's program where we teach Sunday school. Conservative influence #4.

We have a child with CF, our third of four kids. He's four. For about six months, we didn't know anything was "wrong" with him. For a few months, we hoped it was nothing. Then, for six months, we were on a serious quest with all kinds of specialists before we got a diagnosis.
Then, they figured out that his severe physical delays were the result of malnutrition resulting from the malabsorption component of CF. So, now we RELY on our traditional western medical doctors. My wife’s paternal grandfather was a physician. Western medicine is what
we know. Mostly, it’s what we trust, though admittedly, I am always skeptical enough to ask lots of questions and research on my own, even in the face of know-it-all doctors. But, as you know, our son would not live without the western medicine that keeps him alive and well.
So, we are sold on it. Conservative influence #5.

However… my mother was for many years an advocate of natural methods of preventative health care. She was forever doling out “wisdom” on how to live better and healthier through positive mental attitude, diet, lifestyle, etc. Some of her ideas were out there. I thought
she was a loon a lot of the time. Nevertheless, she was an influence, and in some ways a strong one even in this area, though not so conservative on this. Realistically, I never had much reason to give her ways of handling health too much serious thought, until…

Just over two years ago, I was about to turn 39. My dad was in the midst of numerous serious health issues. It concerned me, as I reflected on my age and what my genes might be coded for, e.g., diabetes among other things. I started to worry. And, BAM… I got sick… one thing after the next. It was crazy, the amount of stuff I dealt with in such a short time. The worst of it was chronic pain, in all the wrong places. Then, my IBS of 20+ years (which I had managed
by ignoring it and never seeing a doctor, or even talking about it) got MUCH WORSE! I could barely function. I was stressed, and very sick and at times convinced the end was near. Seriously.

I went to my doctor a dozen times in the course of a year. I saw a urologist a few times for various symptoms and various testing was done. I saw a gastroenterologist and had all those tests run. I was sure that one of the many tests would show I had cancer or some such
terminal illness. But, that never happened. My doctors gave me no diagnosis. They gave me pills, none of which helped, and many of which caused me unpleasant side effects.

At some point, a light came on. Actually, it was in prayer. I prayed all the time during this stuff, sometimes hours at a time. And, eventually, I realized that my mom, in her cuckoo alternative
healthcare ways, was never sick. My dad, who thought my mom’s ways were BS (they were divorced many years by then) and saw every kind of doctor and took every kind of pill, was always “sick” in some way or another. I believe the Lord showed stubborn ol’ me that there was
something to this alternative health care stuff.

I tried a few simple things instead of my pills and doctors. Changing chairs, trying a massager, going to a chiropractor, simple stuff like that. All of it helped, a little. Then, I decided to try acupuncture for pain. I was amazed that it helped. Then, I found a book on chronic pain from a psychological perspective and it helped almost overnight, truly. (Funny how once you realize that there might be something else going on other than a deathly illness that symptoms can
improve, at least in my case with no diagnosis.) I eventually found another acupuncturist to deal with my digestive issues. And, I found a book on healing severe digestive disorders naturally, which was a Godsend indeed. I have taken Chinese herbs and various supplements
from the health food store. All of that has helped way more than my doctors or their prescriptions.

Now, I am a convert. Alternative health care works! For me, it’s better than the traditional western stuff!?

But, what about my child with CF? I have been wanting to enhance his care via Traditional Chinese Medicine or some other method. But, he’s four. He can’t really tell me whether it’s helping in any meaningful way. And, I am not willing to throw out his MDs’ advice or direction – THEY ARE KEEPING HIM ALIVE AND RELATIVELY HEALTHY! But, the more thought I give to this, the more I know I have to do something to add in this enhancement. Lately, I have been wondering what to do, and when and how, and how to afford it on top of the various medical expenses we already have.

This summer, my CF child had his first hospitalization, for surgery to remove his tonsils, adenoids and clear his sinuses, with a week of IV antibiotics due to CF crap. Around that time, my forever-healthy mother was diagnosed out of the blue with pancreatic cancer. She actually went into the hospital for her second time, and into the ICU the day my son had surgery. Within a few days, my mom died, one month after her diagnosis was given. It was a shock. And, it startled me and made me question alternative health care methods a bit. But, I
have to recognize my own health improvements. So, I am now back to thinking more seriously about how to do this.

So, in reading your post, I am excited to have a resource to learn from, to gain an adult perspective from an intelligent CFer with so much to gain, and so much to lose. I hope that you post often on your experiences. Also, I hope that you will keep me posted, even
personally, through direct email. I am posting here nonetheless, because, as you did, I suspect there are others in the same shoes, who might be interested in exploring how to enhance traditional western medicine with alternative health care methods that might bring a new
level of health potential, despite the severity of CF and its foreboding genetic code of doom.

Peace be with you!

My response (slightly abridged):

Hey Jason,

Thanks so much for your letter and for sharing your story. It sounds like you're an extremely devoted CF dad who is working proactively to do the very best for his son -- you have no idea what a difference this can make in the long run! I also love that you called me an "intelligent CFer." I'll have to try and live up to the high expectations!

It's great to hear about your own health achievements with some more "alternative" forms of therapy/medicine/healing. I think you're absolutely right that sometimes these can even be better than "traditional" medicine, but obviously in the case of CF the two have to be used together. What really convinced me to at least try was a hospital worker (a nurse) who told me that in her experience, people who really trust and believe that they're going to get better tend to heal faster than those who are too worried or scared about their conditions to see past the pain. And obviously that's a generalization -- I'm not at all trying to say that simply being positive can get you out of the ICU and off the morphine, so to speak -- but I think there's some truth to it. After all, we all know and accept that our bodies receive signals from our brain, so it would make sense that the more positive those signals, the more positive the response. I also know a fellow CFer with some unrelated chronic pain issues who has found a lot of success treating with massages and acupuncture, though she also uses some more "traditional" routes as well. At any rate, I'm more than happy to be your "guinea pig" on this in some ways and give you an adult CFer's perspective on some alternative medicine techniques (there are other blogs out there that can do this too - Cystic Gal definitely uses some healing methods, and Sara from "Ocean Desert" recently wrote about how a positive thought process and some visualization helped her during a hospital stay). Just please remember that every CFer is different -- many of us respond differently to various "traditional" medicines, so I'm sure the same is true with alternative methods.

I would like to say for the record that even though your son is still little, it sounds as though you're giving him a great head start. I personally think that the three most important things for a CF child (besides, as always, loving parents) are parents willing to be proactive in treatment and seek out information, a strong grounding in personal responsibility for health maintenance, and as much normalcy as possible. Obviously there are never any guarantees in outcomes, but serious kudos go to you and your wife for such an awesome jump out of the starting gate.

I'm so sorry to hear of your son's admission, but I hope he's doing much better now that he's had his "tune up." Prayers that his lungs stay healthy, and know that there are SO many exciting and hopeful new therapies out there for young CFers that give me personally SO MUCH hope for the future.

Take care,

**Okay, so I'm opening this up for a blogger challenge. If you have your own blog, answer one or some or all of these questions there, and then post here to let everyone know to check it out. Or else just answer the questions in the comment field. But either way, I'd love to get a good discussion going on this!

1) What are your thoughts on "alternative" forms of medicine?

2) Have you personally ever tried any of techniques to manage your CF (or your child's) other than the typically prescribed routine? If so, what did you think of them? Are you still doing them?

3) What does "healing" mean to you in the context of cystic fibrosis.

4) Anything else you want to say on this topic.

Enjoy the challenge!


  1. I look forward to reading the responses from your other readers. Again, I'm glad I found your blog.

  2. I'll post the questions/answers over at la vie cystique!!

  3. I do have a number of experiences with alternative medicine, but I'm not going to go into them right now. What I wanted to say to the original poster was this: I personally believe that the best way to explore alternative therapies is with the assistance of a CF doctor. Obviously not all CF docs are willing to do this so it may take some searching to find one willing, but I think the effort would be well worth it.

    My CF-Doc's feelings are that if you are doing everything traditional, and are not happy or are still looking for more - then seek out alternative treatments on top of this. My biggest concern with adding ANYTHING to my body (supplements, herbs, etc.) is that they would somehow interact with the other stuff I'm already on. So I run everything by my CF doctor.

    I have also been known to ask doctors to research alternative treatments for me. There is a lot available on the internet, but I like hearing what they find as well.

    Also, if I was a parent of a child with CF, I would be very careful with all of this stuff. Childrens' bodies are much different - things can effect them a lot more - so I would definitely want to have my child's CF-doctor's blessing.

    Oh, and as for your question about healing, Piper...I think you (and all cystics!) should read Sick Girl Speaks, if you haven't already. I've just finished it and it has definitely changed my life...I'm so glad that book was written.

  4. Since I don't have a blog, I'll answer here. :)

    1) What are your thoughts on "alternative" forms of medicine?

    I think that Western Medicine can learn a lot from other forms of medicine, some of which have been around a lot longer. I'm receptive to some of these alternative approaches I just don't know where or how to begin! I think that there is a lot more to well being than just the clinical approach, which in my mind is where 'regular' docs seem to focus. The onus is on us as individuals to seek out these other forms of medicine.

    2) Have you personally ever tried any of techniques to manage your CF (or your child's) other than the typically prescribed routine? If so, what did you think of them? Are you still doing them?

    Not yet, (unless you consider chiropractic care as alternative medicine) but I'm intrigued by the concept and hope to explore it some. My chiropracter (once a month) really helps with my core - the muscles and spine alignment, especially my upper back - tend to get stressed from all the coughing. I find that can really help loosen up things mechanically (flexibility etc.) and improve my musculature mobility, thereby allowing me to cough more productively and get better airway clearance. You know how sometimes you can twist or breathe differently and cough differently to get crud moving in various lobes depending on where you feel the tickle or plug? Well, when my muscles and back are all cramped up it's harder to move the crud around.

    3) What does "healing" mean to you in the context of cystic fibrosis.

    For me "healing" is a psychological issue, not a physical one. My ratty lungs aren't going to 'heal' in the sense that a paper cut heals, but I do feel that since our brains are driving the rest of the system our mental state does impact tremendously what's going on inside our bodies, physically and chemically.

    I was diagnosed with CF in early 2008 at age 43, so I'm still coming to grips with the whole CF mortality issue. I'm not at the point where I'm really accepting CF yet... Not sure anyone really ever is but I still think that not having grown up with the CF baggage, my interpretation of healing is likely rather different from someone who knew about CF from a young age.

    There's also coming to grips with the whole overachiever thing... or more accurately not being able to do it all anymore. (Which not only sucks, but is also incredibly frustrating!!) And I look at healing as finding a balance between the various aspects of my life, time with family, work, play etc...

    Let's just say that the healing path is a work in progress...

    Thanks Piper! ~Juliet

  5. Love this. I"ll post my answers over at my blog too.

  6. Fiend:

    In my experience doctors do not have all the answers. And, in facing my own health challenges, I saw my MD a dozen times, and a couple of specialists for exams, numerous tests and so forth. I got nowhere. But, alternative medicine helped me. So, I know there is something to it, and I wonder what it could for my CF child.

    That said, I understand your points. I have already talked to the pulmonologist about what I am thinking of, and I have told her about the herbal supplements I have tried. Also, I understand the drug interaction issue. The acupuncturist that I see, who is the one I would take my child to, is also a pharmacist (her former career, and she maintains her license, as she owns a pharmacy that her dad started).

    I do not intend to go crazy and throw out the baby with the bathwater so to speak. But, I hope to find ways to give my child the best fighting chance of staying as healthy as he can as long as possible. Of course, I have no magic plan for this. Lots to think about though.

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  8. Juliet -

    Diagnosed at 43. Interesting. I'm curious to learn more of your story.

    I'm 41. I have a long history of allergies, sinus infections, periodic bronchitis and horrible digestion dysfunction for decades.

    When my son was diagnosed, and we learned about CF, I started to wonder if my issues could be related somehow. I wondered if I might have a mild form that was never serious enough to get diangnosed.

    More than anything, I wondered if having the CF gene as a carrier could lead to my symptoms (such as my apparent inability to process high fat foods) and whether that might suggest any direction for my own treatment.

    The folks at the CF clinic that my son goes to looked at me like I was crazy when I asked if there was a chance I could have CF-related problems going on. I think their main point was that I have four kids and males with CF are nearly 100% not able to reproduce.

    Who knows? The medical professionals (at least three MDs) I mentioned this to seemed unimpressed with my suggestion. And, I was never tested. So, I turned to alternative medicine and actually got much better.

    So, I am curious... if you were healthy enough to go undiagnosed until 43, what led to the diagnosis? And, what does it mean for your health and treatment? If you're willing to share, you can get to my email address by clicking on my name.

  9. Interesting discussion! I will answer the questions on my blog too.

  10. Jdemott - Just a quick answer here - you can find me at CF2Chat. Piper, please excuse me for hijacking your blog comments. I caught a nontuberculosis mycobacterial (MAC) infection in '06 which I've been battling since. My dx was via full genetic testing. My sweat tests were 'borderline' and in the early 80s the docs all said no, couldn't be CF since I didn't have the pancreatic involvement. Get yourself tested with a full genetic sequencing done by Ambry genetics. Screening panels only look for the ~100 common mutations and there are over 4000 known mutations. ~Juliet

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  12. Interesting and informative blog you have here Piper, and I know this is an old entry, but I am interested in this topic. I definitely feel the best form of health care is staying in tune with your body; being aware of all things going into your body. But through a combination of alternative medicine and traditional medicine together, I feel that you can keep your engine running smoothly. While I do think that natural remedies can be tremendously effective if utilized smartly, but surely not one to the exclusion of the other. Meaning don’t expect the world by only using natural remedies and discounting traditional medicine, and vice versa.