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Home / What I Have Learned Living with Multiple Sclerosis for 18 Years

What I Have Learned Living with Multiple Sclerosis for 18 Years

Ivy Larson Multiple Sclerosis

Yesterday was World MS Day. It was a day set aside to bring global awareness to multiple sclerosis (MS), an often disabling disease of the central nervous system. Although MS might seem like a condition that only affects a small percentage of the population, there is a common denominator linking MS with MILLIONS of people: inflammation.

MS is made worse by inflammation, but so are a tremendous number of other conditions including heart disease, asthma, allergies, fibromyalgia, endometriosis, arthritis, eczema, obesity, depression, dementia, diabetes, etc. Whole body inflammation makes just about every condition I can think of worse.

The good news is, whole body inflammation can be reduced significantly through diet. This does not mean diet can “cure” any of the inflammatory diseases, but it does mean that it can potentially help control the symptoms. Most importantly, an anti-inflammatory clean eating diet does not have negative side effects, only side “benefits.” An anti-inflammatory diet can even help you age slower.

I Have Now Had Multiple Sclerosis for 18+ Years….

For those of you who do not know my story, I was diagnosed with MS in 1998 when I was just 22 years old. For a number of reasons, I decided to try a whole foods anti-inflammatory diet (rather than the conventional disease-modifying medications) as the first line of treatment for my disease. I figured I could always fall back on the meds if I needed to and that there would be no downside to eating clean (other than that it required a RADICAL diet overhaul—which, admittedly was NOT at all easy.)

It is hard to believe, but it has now been almost 18 years since I was first diagnosed. And (knock on wood!), I have never needed to take the disease-modifying multiple sclerosis medications. I firmly believe changing my plate changed my fate and I believe I am far healthier today because of the MS diagnosis. The reality is, I would have never in a million years have radically overhauled my diet at the age of 22 for no good reason had it not have been for being diagnosed with multiple sclerosis.

An Ounce of Prevention is Worth a Pound of Cure

 

Blake Larson

My son, Blake Larson

I do however believe that starting the anti-inflammatory diet in the very early stages of my disease played a critical role in slowing the progression. Although I did not regain my health overnight, slowly but surely I could see real improvements in my symptoms and my overall wellness.

While it is never too late to make a healthy lifestyle change, the earlier you start, the better. That’s why I have raised my now 15-year old son, Blake (see photo above) to eat a whole foods diet from the time he was weaned.

My hope is that Blake will never have to go through what I went through.

Life After MS

Since my diagnosis, I have written 5 books with my incredibly supportive husband, Andy Larson, M.D. The first book we dedicated to our dear friend AJ Cotsalas, a friend we knew from high school who was diagnosed with multiple sclerosis before me.

At the time of AJ’s diagnosis in the 90’s, the idea of following a clean eating diet as a way to control a disease as devastating as multiple sclerosis seemed very far-fetched. Even though it is well-known that multiple sclerosis is a disease made worse by inflammation and that diet can absolutely reduce whole body inflammation, to this day, it is still not the standard of care for neurologists to tell their MS patients to adopt an anti-inflammatory diet. Although my neurologist at the University of Miami told me about the connection between diet and MS, AJ’s neurologist not only didn’t tell him there was a connection, he specifically told him changing his diet would be a “waste of time.” Even though this was only about 20 years ago, you have to understand that back then the whole idea of “food as medicine” was just not something the public in general was ready to hear. There was no “Dr. Oz” show and people had no idea what it meant to eat “whole foods” or what in the world an anti-inflammatory diet even was.

As much as I tried to convince AJ to change his diet, he just couldn’t accept that it would actually work. To AJ, it seemed like it would require a major effort with little to no reward. I spent a good year snail-mailing and emailing AJ all sorts of diet advice, recipes, supplements, etc. and he finally said he would follow my anti-inflammatory diet if I wrote a book and actually got it published by a real publisher. If you knew me at all back then, you know AJ’s promise was basically like saying, “If you build a space ship I promise to ride in it.”

Even though I didn’t even know how to type, I started writing the book. Freehand. I started the book when my son was 6 months old and worked on it every chance I got–between his naps, first thing in the morning, in the middle of the night after nursing, etc. I would mail pages after pages to my mom to type (and yes, I have the best mom ever!!) and would scribble recipes for her to retest. I became obsessed with finishing the book and even though my husband was in his surgical residency and working over 80 hours a week (this was before restrictions were put on the hours a resident could work), he was on-board helping too. He immersed himself in nutrition research every chance he got and we honestly made writing that book a whole family affair.

The Anti-Inflammatory “MS Diet” Can Help Anyone with an Inflammatory Disease

Although the book was initially written targeting multiple sclerosis, we simply could not ignore the research connecting the dots to inflammation, multiple sclerosis and countless other inflammatory conditions affecting millions of people. It is now well known that whole body inflammation is the common thread that links almost all degenerative diseases together, but back then, this was not common knowledge. We settled on targeting 10 of the most common inflammatory conditions and after what seemed like an infinity, we finally finished the book.

But then we couldn’t get it published..

It was pretty much next to impossible to get the book published because we weren’t famous, didn’t have a “platform”, didn’t have our own weekly radio show, etc. but I FINALLY managed to get the attention of one editor, Alison Janse, at HCI Books. Allison said if I could round up a group of people who had the 10 conditions we were targeting and get them to follow our anti-inflammatory diet and collect testimonials that we could probably get the publisher interested in publishing the book.

With the help of the fitness director, Erin Glynn, at the prestigious Red Bank Atlantic Club (Bon Jovi and Bruce Springsteen were both members of the club) in New Jersey, I was able to put together a trial group of 25 people who had MS, arthritis, fibromyalgia, asthma, excess pounds to lose, etc. By this time the diet had already dramatically improved my health, had helped Andy shed the 15 pounds he had gained from residency, helped my mom get off her asthma medication, optimized my dad’s cholesterol and helped a handful of friends with various conditions. However, we were not sure how long it would actually take to get results because the changes we had all made had happened slowly over time—the more we learned, the more we optimized our diets. But Andy found a study in  JAMA (Journal of the American Medical Association) that showed significant results in blood work, inflammation and blood pressure could be obtained in as little as 5-weeks. The study only included a few of the dietary changes that made up our anti-inflammatory diet and since our program was a much more comprehensive program that not only included diet but also exercise and targeted supplementation, he was confident based on his medical training that if we could get the people to actually commit to the program (and not cheat!) that we could get some amazing results in as little as 5-weeks.

We were off and running! The program was heavily promoted within the Atlantic Club as the 5-Week Health & Body Makeover Challenge and everyone was super excited to get started.

He Who Has Health Has Hope

It was hot summer day in 2013 and less than 2 weeks before the Challenge start date and I was on top of the world and beyond excited. I was on the phone with Nordic Naturals (they were sponsoring the pharmaceutical grade fish oil for the Challenge) when I got a call from one of my best friends, Susan Malt, that would change my outlook on life forever.

AJ had taken his own life. His best friend found him in his garage. It was only about a week after his 30th birthday.

A searing pain shot through my stomach, which felt both nauseated and empty all at once. I was lightheaded, dizzy and unable to think straight or even begin to comprehend the finality of what I had just heard. The last time I had spoken to AJ was when he called less than 2 weeks earlier to say he was sorry. I had no idea what he was apologizing for when he called and I was so caught up in organizing the Challenge and taking care of my son that I dismissed how “off” he sounded on the phone that day. I knew he had suffered terrible depression in the past (multiple sclerosis and depression go hand in hand because the disease changes your brain in a way that affects your mood, your thoughts and your cognition), but I also knew he always bounced out of it. I now realize he was calling to apologize for what he was going to do.

That summer day, I not only lost a dear friend, I also gained a deep fear of what multiple sclerosis could do not only to your body, but to your spirit. I realized how terribly disabling of a disease it really was.

It was so selfish of me, but all I could think of with AJ gone was that now I was all alone without another friend who understood the psychological burden of living with a chronic, unpredictable and incurable illness. AJ had been diagnosed before me and just knowing that I was not alone was incredibly comforting. He was also always the one to tell me that a shitty day would always gets better.

I came very close to cancelling the whole Challenge and almost decided to forget about the book entirely. But with my husband’s encouragement, at the last minute I decided I would carry on. I showed up the first night of the Challenge and burst into tears when I gave the opening talk.

I was in a terrible funk while trying to lead that first Challenge but everyone was so committed to getting results that I felt obligated to do my best. I kept showing up.

The results from that first class were so incredible that we got our book published. It was a huge success and was translated into 7 different languages. We donated the proceeds of the first 10,000 copies sold to MS research in AJ’s name and since then I have been writing and talking about nutrition ever since.

Although my multiple sclerosis has been in remission for over 18 years, MS turned out to be the least of my health problems. I had no idea a congenital hip disorder (femoral retroversion) would cause a decade of hip pain followed by 2 major surgeries and serious complications. By FAR my biggest health challenge has actually not been MS, but rather my hip. The last surgery was a 7-hour derotational osteotamy that resulted in serious complications. In addition to terrible pain, I couldn’t walk for over 6 months (you can read my full story HERE.) Worse than the pain and worse than not being able to walk however was the deep and terrible depression I had following the surgery (more on this as it relates to multiple sclerosis and many other chronic diseases in a bit.)

Full Fitness Fusion 30 Minute WorkoutBut I DID make a full recovery.

In fact, less than 3 months after I started walking again I filmed the Full Fitness Fusion 30-Minute workout DVD that went along with our Clean Cuisine book.

 

FullFitnessFusion-9Months

The Book I Wish AJ Would Have Been Here to Read…

A Mind of Your Own

There is one book I believe could have saved AJ. It’s not my book, instead it is the recently released NY Times Bestselling book written by Kelly Brogan, M.D. (see photo left.)

“A Mind of Your Own: The Truth About Depression and How Women Can Heal Their Bodies to Reclaim Their Lives”  has a hot pink cover and is clearly marketed to women, but it’s a book that is applicable to everyone. And I believe anyone who has multiple sclerosis or any other chronic inflammatory condition should absolutely read this book.

In her book Dr. Brogran presents irrefutable research linking depression to both inflammation AND an unhealthy gut (leaky gut, imbalances in the gut microbiome, etc.) This is VERY important information for anyone with multiple sclerosis because one of the most common symptoms of multiple sclerosis is depression. One of the biggest problems with the conventional forms of treatment and the disease-modifying medications used to treat multiple sclerosis is that they exacerbate depression.

I will forever be convinced that it was not at all a coincidence that AJ committed suicide a few weeks after he was put on Rebiff . One of the number one side effects of Rebiff is “suicidal ideation.” 

For over 18 years my main focus has been on following an anti-inflammatory diet to keep my multiple sclerosis in remission. This worked fine until my 2nd hip surgery. The hardcore medications I was on (including narcotics and anti-inflammatories) caused some serious gut problems, which I now believe after reading Dr. Brogan’s book are the reason I had such a serious depression following the 2nd surgery. I had been in a funk before, but never anything as terrible or dark as what I went through after that last surgery. I now think I have an inkling of an understanding of what AJ must have been going through.

Brain MakerIn addition to Dr. Brogan’s book, my former neurologist, NY Times Bestselling author David Perlmutter, M.D. (who also wrote the foreword to our first book back in 2005), also has a new book out titled “Brain Maker: The Power of Gut Microbiomes to Heal and Protect Your Brain”.  I read Dr. Perlmutter’s book (see photo left) cover to cover on our recent trip to Whistler and the information closely parallels what Dr. Brogan has in her book. Although Dr. Brogan does not specifically address multiple sclerosis in her book, Dr. Perlmutter does. Again, this is another must-read book for anyone who has multiple sclerosis.

I go into everything in great detail about Dr. Brogan’s book in my video below and touch on it a bit in this article, but here is a little summary below….

  • Whether you have multiple sclerosis or any other inflammatory condition, eating a whole foods, anti-inflammatory diet and healing your gut can help tremendously.
  • Depression is a serious SYMPTOM (but not disease) that often goes hand in hand with many inflammatory conditions, including multiple sclerosis.
  • Holistic doctors, including Dr. Brogan and Dr. Perlmutter, are successfully treating the symptoms of depression by healing the gut and putting their patients on an anti-inflammatory diet.
  • Every single medication has a side effect, many of which disrupt gut health and / or create inflammation. In her book, Dr. Brogan reveals how birth control pills have been shown to promote inflammation while depleting critical nutrients and antioxidants. Over the counter anti-inflammatory drugs such as Advil have been proven to be toxic to the upper gastrointestinal tract and contribute to leaky gut.

It is my wish that this blog post will give hope to anyone who has been diagnosed with multiple sclerosis. There are SO many more resources nowadays than there ever were when I was diagnosed and in many ways it is much easier to clean up your diet and lifestyle than ever before. The internet is filled to the brim with mouthwatering and healing clean eating recipes and it seems like every other day a new whole foods and healthy lifestyle based company sprouts up.

Unlike when I was diagnosed, clean eating is now a “thing” —and there are so many people catching on. Most importantly, I also hope you realize you are not alone in whatever you may be going through. There is help out there and there is always, always hope. I so very much wish my friend AJ would have known this….

P.S. More Information on How I Manage My Multiple Sclerosis is Available In My Free Resource Guide 

IMAGE-MS-COVER1-231x300

Ivy Larson

In 2010, Clean Cuisine was launched because Ivy Larson wanted to share her anti-inflammatory lifestyle and delicious recipes using ingredients in their most natural and nutrient-rich state. In 2020, Ivy passed the website to Aimee and Madison. Since then, they have been adding new recipes and nutrition posts while updating old recipes and articles. Thanks for visiting Clean Cuisine!

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Holly

Thursday 2nd of June 2016

Thank you, Ivy! You write very well. Dr. Brogan is a breath of fresh air as you are. I am reading her book right now and have read your Clean Cuisine book. Keep up the good work!

Ivy Larson

Thursday 2nd of June 2016

Thank you so much for the positive feedback Holly. I'm so glad you have Dr. Brogan's book too! I think she is going to be a real game-changer in the medical world...

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