Sunday, May 13, 2018
Living with an illness with no proven cure leads me to treat myself as a guinea pig. I read about the latest studies and breakthroughs for MS and auto-immune diseases. I seek recommendations from people that are managing their health well. I compare what I’m doing to the treatment and see if it makes sense for me. If the risk is low and I’m not doing it already, I’ll give it a shot. It’s a very unscientific approach. But given I’m bumping up against an unknown date when my MS could progress, I’m not willing to wait until all the studies are in when it could be too late for me.
I’ve tried eating vegan, vegetarian, gluten-free, dairy-free, low-fat, and paleo. I’ve followed the Wahl’s Protocol, the Auto-immune Protocol, and elimination diets. Some of these personal trials helped, and some didn’t. Over the course of a couple decades of trial and error with my food choices, reading everything I can find, and obtaining the guidance of a naturopath to help me develop my dietary choices, I’ve found a good mix of dos and don’ts to follow. It’s one that I can maintain, and it seems to be working.
All this is in addition to following my neurologist’s recommendations to take a disease-modifying medication (suppress my immune system to reduce the frequency of relapses), eat healthy, rest, exercise, sleep and reduce stress.
In the United States, until something is FDA approved and a standard recommendation from our providers, it’s considered alternative when used in place of conventional medicine and complementary when used in addition to standard treatment options.
My food choices are a complementary treatment to my MS Neurologist’s treatment advice. In the past when I’ve brought it up to him, he’s been skeptical of the benefits of special diets beyond eating healthy per USDA guidance. He also doesn’t see the harm so long as I’m getting adequate nutrition. I think it’s been a big part of managing my MS well. This approach is validated more and more each day as studies show a connection between good gut health with the right mix of bacteria in the intestines and better health for all people, not just those with MS.
I’m closely watching advances in stem cell treatments whereby people with MS undergo stem cell transplants to reboot the immune system. People are getting the treatment by participating in studies, traveling to foreign countries, and initiating GoFundMe collections to pay for the treatment. Some have reported great improvement while others have found no change. For now, it’s an alternative or complementary treatment. Hopefully someday in the not too distant future, it continues to provide success for enough people and obtains approval in the US to become available as a standard treatment option. With continued studies and willing participants, I’m optimistic it will happen. From groups on Facebook, I’ve read from those that have had treatments that stem cell treatment is something that is not a one-time cure for MS. So far, it’s a method to slow progression of MS for people. If the medication I’m taking wasn’t working for me and I qualified for a trial, I would consider this treatment.
With any self-care, it’s important to tell your care providers what treatments you’re doing. Supplements are easy to self-prescribe, and it’s good to have lab tests done to see if any blood levels are outside of normal levels. Some herbal remedies may counteract medications you’re taking.
If my provider isn’t on board with a treatment but it’s not dangerous, I’ll make it clear it’s my decision whether or not to continue non-conventional treatments. It’s uncomfortable for me to go against my doctor’s recommendation, but standing firm and owning my treatment decisions is a good skill to cultivate. I’m the one who will live with the consequences, and my comfort level with the risk is ultimately the one that needs to prevail.