Just with this title, I can hear some people cheering (and a few showing their disappointment in me), however, I may be disappointing most to the true believers (in CAM) by the time I am done.
If you know me, you know I am a very evidence-based-medicine person. I love facts and am skeptical about new information until it is proven and I’m not even from Missouri (I’m working on a long, two-part Rambling on the idea of searching for truth). I have been very skeptical of CAM (“complimentary” and alternative medicine) and for a good reason. It often fails the tests to see if it works. For example, back when I worked for Mayo Clinic, there was a big market for Omega-3 oils with the claims of reversing memory problems or even Alzheimer’s Disease. Our (neurology) department (and our department was considered # 1 in the country at the time) did a very good study to look at the role of Omega-3 oils in Alzheimer’s Disease. The study was double blinded (neither the patient or the doctor knows who is getting the real Omega-3) and the study was of a long duration (I think 5 years) with a large patient population. In the end, the Omega-3 showed no benefit. But that didn’t slow down the supplement companies from continuing to market it for dementia. There are no peer-review studies for the so-called “jelly fish derived” memory supplement that I know of (and I’ve looked), although their commercials imply there is.
I believe, and believe still, just as Julie Yip Williams, in her books Unwinding the Miracle, stated, that she was not going to turn to CAM to treat her cancer not matter how desperate she becomes. . . but then she does. It does not help, in a matter of fact, it set her back.
Steve Jobs turned to CAM early in the course of his liver disease. Rich people often make themselves the captain of their own ships. At the end, he regretted that decision.
I put complimentary within quotes above, because the reality of CAM is that it is often “competitive” to evidence-based medicine. Both the cancer center in Seattle and my local cancer center had to break off relationships with CAM providers, because those providers told the patients to do things that the cancer centers opposed, such as stopping their chemotherapy.
With all of that said, I understand in a very personal way why so many people do turn to CAM for the treatment of their chronic diseases. It is very disheartening to visit medical provider after medical provider an be told (my paraphrase) “You’re screwed. You did nothing to cause this and there is nothing you can do to help. A few people get better but know one knows why.”
You may not know this but there are two Googles (maybe more). One is the public “Google” and in the shadow is “Google Scholar.” While the main Google searches for the web pages of paying customers first an then the most sought after second, the Google Scholar reviews the research literature. I’m talking real research, such as printed in peer-review journals.
After trying really hard to help my kidneys and then, this week, getting labs that were worse, I spent several depressing hours reading the same old studies (found in Google Scholar) about kidney damage and reversing it. There were no conclusions of anything that could help, not even drinking more water. The same is for damaged motor nerves (which I have, causing significant weakness and a constant twitching and jerking of my muscles that drives me crazy and keeps me awake most nights).
In frustration, I switched back to normal Google and presto, there were hundreds of claims and products to reverse renal damage and motor neuron injury. I, which I don’t normally do, sat and listened to their spiels about their products. But then I did research (back in Google Scholar or other sources) to see if what they were saying had any possible merit. The vast majority were simple bold-faced lies. But a few of them did have a little supporting data. Often it is where a certain supplement helped kidneys or motor neurons in the lab, but didn’t prove helpful in people. Some of them had no human studies. Some of them had one small open-label study by some obscure doctor in some obscure village in India or China. . . on goats.
But before I get to the supplement experiment, I will mention one more of my dabbles in CAM and that was massage. I decided to go for a deep tissue massage soon after I got home from my stem cell transplant. I was forbidden from doing acupuncture because the needles could cause a life-threatening infection. Also, I had a previous deep-tissue massage (years ago, which we won through a raffle). I felt nervous having this strange woman rubbing her hands all over me (I would have felt more uncomfortable having a man do it from homo-phobia tendencies, I’m sure), but it was GLORIOUS.
So, I went to see this masseuse and this time I had to pay for it. It was a mixed bag. The actual massage was also glorious, but there were some hurdles. When I had to fill out the health questionnaire, it looked quite clean (based on the questions asked). Then I told her that I am quite ill, but that illness was not captured in the questionnaire (like it didn’t ask, “Do you have cancer?” or “Do you have renal failure?”). Once I told her I had cancer, I think I became a leper in her eyes. She refused to work on me unless I had my doctor’s permission. I was sorry to say that my personal doctor doesn’t give a rat’s ass if I get a massage or not and probably would think asking for such a letter was silly. I finally talked her into it, promising her that there is no way she will dislodge cancer and cause it to spread.
But the real deal breaker was about a third way through the hour-long treatment, which she was doing in silence. She asked me, “Are you doing any other alternative treatments or nutrition?”
I answered, “I’m on a very extensive diet due to my stem cell transplant and my renal failure, but not through an alternative medicine person.”
There was a pause for a moment and then she added, “Well, you don’t get cancer for no reason.”
I almost pissed in my little gown . . . or blown a gasket if you like. I was so angry, I remained silent for the rest of the treatment and did not make a follow up massage. I did not want to hear the bullshit about my cancer is my fault because I ate a Pop Tart when I was seven or that I used Roundup once in the 1990s. There as been a lot of epidemiological studies about the risk factors for Multiple Myeloma and still very little is known (I’ve mentioned this before) except for a mild risk among carpenters, farmers, and petroleum industry workers. I am none of those.
So, I wish I could continue massage, which could help my twitching and lingering neck pain, but I will have to put it on hold because the stress of hearing the bullshit each week, I’m afraid, would reverse any benefit. I will try acupuncture when I am cleared, which I think will be next June if I am still alive.
So, back to my experiment. I did find about three supplements, which were mentioned in scholarly studies, that helped mouse renal (kidney) or neuron cells to regenerate in the lab but, so far, have not been proven to help humans.
But, when the mainstream evidence medicine doesn’t have any ideas of self-arrest (a mountaineering term but in this case, doing something myself to help stop the progression of my disease) to borrow a term from my pal Donald Trump, what do I have to loose?
Now, if you are in a multiple level marketing company and are selling supplements, please do not contact me to get me to buy your cancer-busting miracle supplements. I’ve had too many of those e-mails and private messages. If you know of any alternative treatment that has some evidence-based research and you are dying to share that, go ahead, as that will not offend me. Mike
PS I am really sorry about typos here. I wrote this at 80 MPH without proof-reading because I supposed to be somewhere.