How to Choose an Alternative Therapy: Does it Quack or Purr?
One person’s cure is another’s poison. If I had a dollar for every time I’ve heard that, I could personally fund all MS research for the next twenty years. And I’m sure you wish you had a dollar for every article you’ve read that warns MS patients about the pitfalls of pursuing alternative therapies.
Using alternative therapies is becoming more popular and accepted these days. The internet is awash in anecdotal accounts of individuals who have failed conventional therapies and are desperate to try anything: A special diet, unregulated stem cell therapy in Costa Rica, mega-doses of vitamins and natural supplements, liberation therapy to open restricted neck veins, and the list goes on. Some therapies have been embraced by the medical community such as acupuncture, yoga and massage. Many of us know enough to do research on these procedures before jumping in. But let’s review some questions we should ask.
Are you considering this treatment because you’ve decided all else has failed?
Do you feel desperate to grasp at anything?
If we feel such things, did we communicate our despair to our doctors? Have they tried everything they know of? Sometimes we shut ourselves down and don’t give our docs and nurses another go-round. We burn out on health care. I’ve been there and I think pretty much everybody has had their moments. But whatever the reason, it’s never a good idea to make big decisions while in a highly emotional—and vulnerable state. It can help a lot to talk to a close friend, family member, MS group, nurses, strangers on the internet can be great, too. They are totally objective. Doing this might keep you from taking the red-eye to Mexico and paying $10,000 for ginquaca infusions. What is that anyway? Likely invented by a ginquack.
By the way, whenever you read the word “Mexico” in an anecdotal account, a red flag should pop up. Please don’t go to Mexico for anything but a vacation.
If you have tried all that’s in the pharma canon to alleviate your pain or spasms or limb weakness—or you don’t want to take one more damn pill and now you want something a bit off the beaten path, then research is next step. Go to the MS organizations’ websites and look up the therapy. There should be reference links to any kind of study that’s been done or articles by pros who will give their two cents. Then do general internet searches and read, read, read. Try consulting your pharmacist, too, you’d be amazed at how much they know.
The most important thing to keep in mind is safety. Alternative therapies that have not been studied have not gone through Phase I of a clinical trial. Phase I specifically tests a drug’s safety, appropriate dose range, and records side effects. So if you’ve decided to take cough syrup every night to get the rumored benefits of dextromethorphan, how do you know how much to swallow? No Phase I test, no established safe dose. You’re on your own.
Following are just a few therapies and some things to keep in mind.
Bee sting therapy. It’s been around for decades and has been proven effective in easing the inflammation and pain of arthritis in lab mice. But a small study of MS patients done ten years ago showed no improvement in symptoms and relapse rates. Though it is considered safe, the patient may risk a severe allergic reaction. You may not have an allergy to bee stings now, but you could develop one after prolonged exposure.
Hydrogen Peroxide. Hydrogen peroxide therapy has been around for a long time, too. This chemical has been touted by the Oxidative Medicine organization as being a wonder drug for cancer, HIV, Lyme, allergies, heart disease, and multiple sclerosis, among others. The premise is that disease develops due to a lack of oxygen, so administering a high-oxygen regimen over multiple sessions will kill viruses and bacteria believed to be the underlying cause of all diseases. Hydrogen peroxide treatments are usually delivered intravenously. It is not an approved therapy and has no basis in rigorous controlled trials. One well-publicized death as a result of HP infusion occurred in 2005, when a multiple sclerosis patient taking Copaxone received eight infusions, complained of pain, nausea, and bruising, and died a few days later of organ failure and internal bleeding. The treating physician, James Shortt, was later convicted and delicensed for using anabolic steroids and growth hormone in his clinic.
Hyperbaric Oxygen Chamber. The premise of this therapy resembles that of hydrogen peroxide therapy, the basis of which is lack of systemic oxygen allowing diseases to develop. The chamber was developed during the Industrial Revolution and was eventually used to treat compression sickness, a condition afflicting divers who surfaced too quickly and developed the bends. But it has a long history of being used to treat various medical conditions. More recently it has also been used as a youth-preserving treatment by celebrities such as Michael Jackson, who reportedly slept inside one every night. For what it's worth, a 2010 meta-analysis study of 12 randomized trials performed on multiple sclerosis patients during the 1980s found HOC to be of no benefit.
DIY. The following two examples I like to call “the do-it-yourselfers—or DIY.” These are stories I’ve seen posted on the WebMD forum over the past six years.
Our first DIY is a young man that posted an enthusiastic account about a miracle cure he had discovered by using himself as a guinea pig. He claimed to have eaten rare steak every day for two weeks and then gone into complete remission with no lingering symptoms. He wanted readers to know that he planned to create a website to promote this treatment, and wanted the health site to recognize his new blog as a reputable resource for MS patients. I determined that he was not out to scam anyone, he was just incredibly naïve. I responded to his post by suggesting that a meat thermometer should be used and that meat needs to be heated to at least 140 degrees to render it safe to eat. He responded with gratitude and a cheery concession, assured me he would buy a meat thermometer, and thanked me for the heads up. We haven’t heard from him since. Who knows, maybe he really did discover his cure and didn’t need MS forums anymore. I truly hope he’s out there skate-boarding and having a grand time.
Our final DIY is an inventor named David Muresan, a Romanian mechanical engineer who holds several patents for mechanical devices and who also claims the distinction of knowing for certain how to vanquish all diseases by using the body’s own immune system. And there’s only one way to do it: Induce a fever.
For some reason none of my fellow forum friends on WebMD were very enthused. Confused would be more like it. “But I get sick when I’m overheated,” one gal pointed out. “I’ve had fevers and none of them cured my MS,” another one added. But Mr. Muresan was not fazed. He described his latest invention of a super-heated suit for MS patients to wear at a certain temperature for a certain amount of time. He also claimed that his wife has MS and he has wrapped her leg in layers of cotton and plastic cling wrap which caused the leg to heat up. He claimed that his wife walks much better now. After numerous complaints to the moderators about this man, he was finally blocked from the site for making dangerous suggestions and potentially harming some of the more innocent newbies.
Mr. Muresan based his theory on the teachings of the ancient Greek physician, Parmenides, who said: “Give me a chance to create fever and I will cure any disease.”
Mr. Muresan’s credo is: “To suffer from a cold at age 20 is a mistake; to suffer from multiple sclerosis at age 50 is ignorance; to die at age 80 of infections is a shame.”
“All interest in disease and death is only another expression of interest in life.” –Thomas Mann
Well said, Thomas.1-4
Do you celebrate your MS Anniversary?