I like science. I like the scientific process. The scientific method. I even went out and got a degree in Biology, even though my heart was in my music, but music doesn’t always pay the bills. I like the idea of noticing something that causes us to ask a question, form a hypothesis, test the hypothesis, and develop a theory. I love randomized, double blinded studies with placebos to help come up with answers. Scientific evidence.
There is scientific evidence, and there is anecdotal evidence.
No doubt, you’ve heard of various diets, supplements, treatments, etc., that claim to “cure” MS. These wonderful ideas have helped some PwMS. There are some supplements that have gone through randomized double blinded studies, and MS specialists are wise to these studies, and recommend things like Acetyl L-Carnitine (an amino acid, easily acquired over the counter) to help with fatigue.
Here on the forum, we’ve bandied around diet ideas, and the consensus is that diet has not been scientifically proven to “cure” MS. There is only anecdotal evidence that diet helps MS.
A few names that pop up around here are Swank, George Jelinek, and Terry Wahls. The diet books, TED talks, foundations, etc., have made a few folks quite a little fistful of $$$. Personally, I have a problem with those who use their successes to make $$$. I’ll read their blogs, listen to their talks, and mostly take it all with a grain of salt.
A handful of my live MS support group went Paleo after seeing Dr. Wahls’ TED talk, last November. They’re having small, but noticeable success with it. But they still have MS, and they still range from unaided walking to using wheelchairs. The ones who use assistive devices (canes, crutches, scooters, wheelchairs) still use them.
I got curious one day in March, while riding the train through California’s Central Valley with my sister. We noticed my fatigue became really pronounced after she and I shared a cookie. I had seen Dr. Wahls’ TED talk, and when I got home, I started researching Paleo diets. A couple of sites left an impression on me. One is Mark’s Daily Apple, the other is Whole 9 (and Whole 30). These guys make $$$ by selling books and supplements, too. There’s some real science behind the diet, too. Anyway, I took the plunge and started eating like a cavewoman!
This wasn’t at all difficult for me to do. I have a grass-fed rancher 7 miles from the house who raises grass-fed beef, lamb, and pork. I’m surrounded by organic farms, and our two local farmers markets sell produce grown within a 15 mile radius of the market. Giving up grains wasn’t a problem, in fact, I don’t even miss them. I don’t miss sugar, flour or dairy (some Paleo circles say dairy is fine) I’m roughly 90% Paleo, allowing myself 2 “cheater” meals/week.
The first week was kind of rough, and my fatigue levels went through the roof. I read that this is often the case when Paleo is first started. Once I got over this hurdle, I swear, my energy improved a bit. I still hit the wall with fatigue a couple of times a day, but it wasn’t quite as intense. April was one of the best months I’d had in 2 years. May, well, not so much. My fatigue has been significant. The best thing I CAN say for the diet, though, is that my digestion has never been better, I’ve lost 10 lbs, and I’m eating amazing, local food. For these two last reasons alone, I’m going to continue my personal experiment, and make my own anecdotal evidence.
I still love the scientific method, but I also keep an open mind regarding alternative therapies, such as diet, Yoga, Tai Chi, Acupuncture, and Homeopathy. If alternative therapies work for you as an individual, I say, more power to you. Please share your thoughts and successes with us.
It was an interesting article, and the discussion/flame war following it was interesting, too.
I still side with the scientific method, but I know I am free to experiment (within reason and safety) with myself. If over time, say, six months or a year, I'm not getting reasonable results, I'll abandon my experiment with myself.
As far as other alternative therapies I've tried, I've had limited luck with Homeopathy. Arnica for bumps and bruises, and Calendula for skin irritation, are the only things that have worked well for me. Other Homeopathic remedies have done nothing for me, and I've tried them for seasonal allergies, viruses, and arthritis.
Acupuncture works really well for me for arthritis, tendonitis, low back pain, and viruses, but hasn't done much for spasticity/spasms, and only limited success with managing fatigue.
Yoga has been a huge part of my life since I was 12 years old (I'll be 54 in 2 weeks). It has kept me stretchy, strong, and happy. I gave birth to my daughter 29 years ago using nothing but Pranayama (Yogic breathing) to manage labor. Now, I find it essential for managing spasticity, spasms, and fatigue management.
Remember folks, this is just my own experience. Your results may vary. We're all different, just as our MS is different.
I really enjoyed reading your posts. I , too, love science and the scientific method used to obtain unbiased facts. I also use some anecdotal thing sn my life as they are things that work for me;placebo effect or whatever.
Thank you for your posts and the need for everyone to look for a proven scientific result for the medications and diets they consume.
Best wishes for your fatigue to improve. You've got that grand baby to play with and you need energy for the little ones who seem to have boundless energy.
I wish you the very best of luck in sticking to the paleo diet.
For my little analytical mind I believe that the scientific proof is layed out superbly by the evidenced based approach from Prof Jelinek. But of course the majority of medicos would disagree. He does have some heavy hitters in the medical world who now acknowelge his work but change will take time.
I have met three people who have been transformed by diet in the long term but they still have MS. So it's not a cure.
GG, I hope to see you on the boards in five years so we can both testify as to whether diet works or not. It is not a short term, quick fix, magic pill.
Prof Jelinek is now calling MS patients world wide to participate in a long term study to prove once and for all either way that his approach works far better than any drug. His latest 5 year research showed patients following his approach on average experienced a 20% improvement.
Now he is looking for people who are not on his program, who have chosen to do perhaps the opposite of diet, to compare both groups and present the findings in five years. If you would like be part of the research, which involves filling in a 20 minute survey each year then you'll need to head to Prof Jelinek's website. I'm not allowed to post the address here.
Thank you so much for this! I don't have any major specific successes to share, but do feel drained when I eat cookies, ice cream, or anything for that matter in 'large' volumes good or bad. I do much better with small meals, or snacks throughout the day, and feel even better when they are all natch! Some call me a grazer, and it's true, haha
You mention the other supplements for fatigue, and we do get that question over and over and most recently by needanswers who cannot take the provigil.
Thank you again for this, I look forward to reading more!
Nice post! I am a scientist so you know I love the scientific approach! I do have issues with Parma and the big money they make out of it though, makes me wonder about their true motive. Sorry I'm going off topic.
I am currently following the swank diet (because it seemed to be the best one to fit into my lifestyle, i'll change it up if I don't see any results) Interestingly all of the different diets the recovery diet, paleo diet and swank diet claim to make a huge difference but what is or is not allowed on the diets vary. Some allow red meat (grass fed) but limited carbs and others allow no red meat. So I started thinking, they all in my mind have shown some improvement for the people following the diet. I agree I take this with a grain of salt, but I do think there is a truth to diet affecting MS.
Ok I'm sorry for going on (I really wanted to keep it short) but..... I know a researcher working in MS that found that if he starved the MS mice they got better (please do not try at home ;)). He spoke about this to highlight the connection between MS and metabolism. So with this in mind I thought about the diets and thought about what is similar between them, they are high in Fruit and Veg, such as leafy greens. They are all low in fat. Keep the saturated fat down seems key. They all say no to processed foods. They all encourage supplementing your diet with vitamins. So I think these are the important points of the diets. Follow a healthy diet!! Does anyone have any thoughts on this?
Also I have a thought/question on the recovery diet, it says no dairy because dairy can mimic myelin BUT isn't that what copaxone does? And copaxone does not work by ingesting so would dairy be broken down also? Sorry I am just confused on this part of the diet.
The dairy connection is related to "leaky gut", and overall irritation and congestion. Personally, I've never gotten along with dairy products, especially fresh dairy. Sometimes I can get away with tiny amounts of cultured dairy, i.e., cheese, yogurt, butter.
Ghee is better than butter, as the milk solids have been removed. I do fine with that, but again, in tiny amounts.
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