Here’s an interesting article I ran across from Caltech a couple of years ago. Has anyone heard anything else about this research? Any updates?
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Of Bugs & Brains: Caltech Researchers Discover that Gut Bacteria Affect Multiple Sclerosis
PASADENA, Calif.—Biologists at the California Institute of Technology (Caltech) have demonstrated a connection between multiple sclerosis (MS)—an autoimmune disorder that affects the brain and spinal cord-and gut bacteria.
The work—led by Sarkis K. Mazmanian, an assistant professor of biology at Caltech, and postdoctoral scholar Yun Kyung Lee—was published July 26 in the early online edition of the Proceedings of the National Academy of Sciences.
A few posts ago I mentioned that I had joined Weight Watchers and it, along with the Wahls Protocol, was ensuring I got the nutrition I need in my diet. I’d been experimenting with diets and diet modification for years, talking to doctors and nurses and registered holistic nutritionists… and usually came out with more questions than answers. Questions like:
– If I’m eating right, why do I need all these supplements?
– If YOU AGREE I’m eating right, why are you recommending more supplements?
– What do I ACTUALLY need to take, and in what dosage?
– What do I need to eat, and in what amounts, to get the nutrition I need to cut back or eliminate the supplements?
I discovered that if someone is making a living (or part of their living) selling supplements, they will always have a supplement to recommend, no matter what you’re already taking. I also discovered that medical opinions on supplements for MS vary widely. Everyone agrees that I should be taking Vitamin D, but I’ve been told anywhere from 2000 to 5000 IU’s a day, and somewhere I even read up to 8000 or 10000 IU’s. At one point, I was taking something like 14 pills at once, with all the different supplements.
I hate taking pills. I’ve mentioned that before. That was what inspired me to start looking for food-as-medicine type information. There’s nothing extra for these people to sell, no supplements or whatever, although they may push the occasional book. That’s okay, I’m fine with buying a book or two. It’s certainly cheaper than 14 supplements a month.
I was chatting with a Registered Holistic Nutritionist, who mentioned her Mom had been diagnosed with MS, and she’d found this amazing Ted Talk from a woman who had used diet modification to control her symptoms. This woman was Dr. Terry Wahls, and she went from a tilt-recline wheelchair and secondary-progressive MS to horseback and remission in something like a year, purely through diet.
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Here was something I could get behind. I was totally willing to change my diet and my eating habits, because I believed from the beginning that the answer to most of my problems was in what I was eating. I just didn’t know what to change. So I toyed with the Wahls diet. I bought her book, “Minding My Mitochondria,” and read it. Not cover to cover, since some of it was a little too scientific for me, but enough to see what she was talking about. And I slowly started eating less processed foods. And more vegetables. And less grains. Then I took the plunge and went gluten-free, which is one of the most painful things I’ve ever done – my Mom’s Italian, Dad’s Dutch, and we survived on pasta and bread. But suddenly, one day it just stopped being so awful. My biggest discovery is that I can’t use substitutes. Gluten free bread is inedible, so I just don’t eat bread anymore. Cookies and muffins, sure, because they’re supposed to be dense and heavy. I can’t do substitutions because I have a very firm opinion on what food SHOULD taste like, and what the texture should be. So I just cut most grains out altogether, and I don’t even miss them. I’m reintroducing some into my diet, on advice from a Registered Dietitian, but it’s quinoa, rice and oats, mostly, and for now only once a week. I really try to eat more nutrient-dense foods, and starches just don’t have as many nutrients.
I also toyed with Dr. John McDougall’s diet, and I tried a Paleo diet, but if something doesn’t make sense to me, or (more importantly) doesn’t FEEL right to me, I won’t embrace it wholeheartedly. No one source of information, or one type of diet, ever felt completely right to me. Until I joined Weight Watchers.
I know, I know, I sound like a recruitment poster or something. But seriously, the new system doesn’t contradict any of the dietary recommendations that I decided to follow over the last few years, and it actually makes it a lot of things easier for me. I use their system to keep track of all the fruits and veggies and animal proteins and other good things I’m SUPPOSED to be eating, and it’s actually LESS restrictive than what I’ve been doing by myself for the last while. I’m eating a lot more now, and a wider variety of food, than I was allowing myself before I had these guidelines.
This is what I’ve done to combine the Weight Watcher tracking with what I got out of Dr. Wahls’ book, and I ran it by a Registered Dietician to make sure that my new planned diet was healthy and safe – she gave me two thumbs up!
– I aim for 9 cups of water. This may sound like a lot, but I make a lot of smoothies and soups, and I count the water I use in those as well. Plus, since starting Modafinil, the persistent dry-mouth makes me WANT even more water!
– I aim for 5 to 9 servings of fruits and vegetables a day, which is easy if you like making soups and smoothies. I assume 100 grams is a serving, and I label each serving check-box with a colour: red, orange, yellow, 4 greens, blue, and white. White is NOT starch, it’s the sulfurous veggies like cauliflower and mushrooms and onions. According to Dr. Wahls, keeping track of colours helps to ensure you get a good balance of all the different micro-nutrients you need, maybe not every day, but over the course of the week.
– I aim for two servings of healthy oil; one could be a teaspoon of olive oil or 1/8 avocado.
– I aim for 6 ounces of protein in a day, at least half of which will be animal protein. (If it had a face, it’s animal protein.)
– I aim for three servings of dairy – I react funny to cow milk and cream, so I stick to yogurt and cheese, and I use a LOT of almond milk, which also counts as dairy. Not sure why, but I’ll take it!
– I aim for at least one serving of fish a week, and one serving of a non-gluten grain. I’ll increase those as I learn to cook more with them.
– Last but not least, I aim for 2000 IU’s of Vitamin D, a Calcium-Magnesium supplement, and a multivitamin. That’s it.
THIS HAS MADE MY LIFE SO MUCH EASIER! I just have a little list with check boxes, and I try to check my list off every day. No more fretting about what I can and can’t eat. No more going hungry because I can’t figure out what I should eat, or going crazy and eating EVERYTHING IN THE PANTRY. And believe me, with a fruit and veggie heavy diet, I have more problems eating ENOUGH points worth of food than I do going over my daily allowance. Also, Weight Watchers encourages writing down every little bit of food you put in your mouth, and I’ve expanded that to include EVERYTHING, meds and supplements too, and since I’m writing all that down it’s easy to keep track of energy levels and hunger levels as well.
So there’s my take on food, nutrition and diet. Just remember, what works for me may not work for you, and it took a few years of trial and error to come up with a way of eating that’s healthy and comfortable for me. I hope this inspires you to find a healthy and comfortable way for you – it’s completely worth whatever time you spend on it, in the end!
Three little pills, spaced over three days. I’m super jittery but I feel AWAKE! Alive for the first time in forever. Looking forward to testing my limits all over again!
And a little afraid of the crash. But only a little.
Yesterday I didn’t have my normal morning coffee, because I hoped Modafinil would do enough to keep me awake. What I FORGOT was that there’s no actual caffeine in Modafinil – it works on a totally different part of the brain. So by about 2pm I had the (by-now-familiar) withdrawal headache. I have a love-hate relationship with caffeine – we break up occasionally, but I always go back. Anyway, I don’t like drinking coffee after noon or so, because it can interfere with my sleep, so I just waited it out. I kept telling myself “You’ll go to sleep tonight, and in the morning you’ll get up and have your coffee, and it’ll be AMAZING.”
So I just went about my day, doing housework and stuff (MUCH more housework, and more quickly than usual, by the way!) and it was fine, my energy levels were still pretty good, even with the low-grade headache. Right up until about 7pm when the Modafinil, rather abruptly, stopped working. Left my system. Done.
I was at a Weight Watchers meeting. (I’ve discovered that the new system is PERFECT for me, in combination with the Wahls Protocol, to help me make sure I’m getting the nutrients I need.) Anyway, I got hit suddenly with a dizzy spell hard enough to stagger me. I was standing in front of a table, and I’m really glad the table was there, because I’m pretty sure I would have hit the floor otherwise. One of the ladies asked if I was alright, and I said “It’s fine, my new alertness drug just wore off.” But inside my head I was frantic: “How the hell am I gonna get home? I can’t drive like this!” Thankfully, I quickly realized two things: 1. I moved back home so I had LOTS of people I could call if I really needed help, and 2. the dizziness was already wearing off, even if the brain fog wasn’t.
And I honestly think the brain fog wasn’t that bad, it was just that the CONTRAST between the alertness I had felt and then the exhaustion when it wore off was so sudden and pronounced. I had just moved from what felt like my “old, pre-MS normal” to my “MS normal.”
And it scared me. And then I started to over-think the situation (as usual) and freaked myself out even more.
Modafinil isn’t a physically addictive drug. That means my body apparently won’t develop a tolerance, so once my Doctor and I find a working dosage, I won’t have to increase it over time to keep the same effect.
But psychologically? Whoa Momma! I’m incredibly grateful right now that I don’t have an addictive personality. The only addiction I’ve ever dealt with is caffeine, and I’ve weaned myself off it several times, just to make sure I still could. Heh. Another control issue?
But Modafinil? The thought of feeling normal, and all I have to do is take this little pill? One teeny tiny pill, to make such a difference…
That terrifies me. Because I want it so very, very badly.
But that means giving control to this little white pill, doesn’t it? And I know I’m going to do it anyway. The thought is accompanied by both exhilaration and fear.
So yesterday, as I said, I told myself “You’ll go to sleep tonight, and in the morning you’ll get up and have your coffee, and it’ll be AMAZING.” And it was! I actually sat and REVELLED in the coffee, quietly of course. Too early for loud revelling, and besides I hadn’t had my Modafinil yet, so I wasn’t feeling particularly bouncy.
But I was waiting for it, looking forward to it. Craving the thought of feeling normal, if only for half a day. And I understand now, in a way I never have before, how insidious addiction could be. How somebody (with fewer control issues maybe?) could be completely overtaken, suffocated by it. But welcome it anyway.
Holy crap that scared me.
And then I realized that, once again, I was over-thinking. Maybe, just maybe, I should look at Modafinil differently. I mean, if I learned that a friend was on antidepressants, I’d applaud them for reaching out and talking to someone, and taking control of their situation. Too many people, I think, still assume that therapy exists for the weak. I think it exists for those strong enough to talk to someone about their lives, people who are proactive and want to change things about their thoughts and situations. (Ahem. I finally made contact with a therapist, to discuss my control issues and learn to deal with “my new normal.” I’m now on a waiting list. But I’m still happy I finally reached out to someone about it!)
Anyway, maybe I should think about Modafinil the way I think about antidepressants: it’s a way to help regain control, not a way to give control away to a drug. So I asked myself a few questions:
Q: Is it a necessary drug for me to take? Will my condition get worse without it?
A: Well, no. Most likely not. There have been some studies indicating that Modafinil may slow MS progression, but not enough to make it “a necessary drug.”
Q: Will my experience of life be enhanced by this drug? Will it help me participate more fully in my own life?
A: Yes, I believe it will.
Those simple questions, that stated belief, has leached away most of my fear regarding any loss of control. In any case, it’s only day three, and I may have a lot more to learn about this lol!
So my lesson for today is this:
BE AWARE OF THE CHOICES YOU MAKE, AND WHY YOU MAKE THEM.
That’s it, that’s all. There are always consequences, so when you’re making what you feel is a major decision, think about it. Be aware enough that you can feel good about what you decide. Write down your reasons, because it’ll help to remind you later WHY it was a good decision for you at the time. Is the end result worth what you feel you’ll have to give up? If your answer is yes, then just do it!
Today I went to my Doctor and talked to her about going on Modafinil. For those of you who’ve never heard of it, Modafinil is an alertness drug that was originally marketed as a treatment for narcolepsy and other sleep disorders. It’s also marketed as Provigil in the US and Alertec in Canada. Ages ago, my Neurologist suggested I try it, since my major MS complaints are fatigue (Hah! Total exhaustion more like! I wish there were more descriptive words for it!) and cognitive dysfunction, more colloquially known as “brain fog.”
At the time, I said no, because 1. I dislike taking pills and 2. I was in the middle of learning about behavioral- and diet-modification to try to control my symptoms. Now, I feel like I’ve taken those as far as I can, with some success (I’ll write about my diet discoveries soon) and I was ready for the next step. Pharmacology. In other words, pills. I’ve got a few articles below if you’re curious about it, or just do an internet search – there’s quite a bit of information about Modafinil, since it’s been out since 1994 or so, and used to treat several different ailments.
So! I’ve taken my first pill. Once dose, once a day, in the morning. It’ll be up to me to discover if I need to take it with food or not. I just took it, so I’m not sure exactly how my system is going to react to it, but I’ll let you know tomorrow. I’m both scared that it won’t do anything and excited that it might!
PS I just noticed I used the word “colloquially” in the first paragraph. I feel smarter already!
I LOVE to sing! I’ve always wanted to take voice lessons, but growing up in a small town meant that opportunity didn’t exist. So now that I live in a city, I’m taking advantage of some of the opportunities here!
I’ve been taking private classical voice lessons for almost two years now, which means I started as an adult after I was diagnosed. I’ve seen too many people say they’re too old or they can’t start something new because they’re sick, but if you don’t start now then when will you? All we have is now!
Anyway, my teacher is amazing and she lets me occasionally take a break from classical to get into pop or random karaoke, which is perfect for keeping me interested and engaged. So far I have 3 songs prepared at roughly performance level, and I’m learning another one right now called “Apres Un Reve” by Gabriel Faure, who I think is one of the most brilliant composers of all time. He’s not very well known, apparently because he wrote “art songs’ (single stand-alone compositions) rather than operas. Here’s an instrumental version of Apres Un Reve performed on violin by Joshua Bell:
I just want to point out that you don’t need to be exceedingly mobile to sing. MS doesn’t mean you can’t have hobbies, and it certainly doesn’t mean you should give up the things you love! It just means you’ll get really good at compromise. One of my compromises is that a lot of my voice training involves learning to sound like “healthy me” even when I’m fatigued or battling cold and flu-type symptoms, which I am half the time. I don’t need to sound better than anyone else, I just want to do justice to the songs that I’m singing. I want to be able to sing in a way people can hear the beauty of the song itself, the brilliance of the composition. And maybe one of these days I’ll post video of me singing, and you can let me know if I’ve succeeded!
I found these amazing videos on Vimeo, which means they’re publicly available and totally legal for me to post here on my blog (for as long as they’re up, anyway lol!)
I’ve been very wary about “believing” in CCSVI as the miracle cure that a lot of people seem to be claiming. Dr. Zamboni seemed to me to be claiming too much, too soon, without a lot of research to back his claims up. Here’s an article explaining a little about it, and I’ll discuss it below.
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What Is The Difference Between Multiple Sclerosis And CCSVI?
While Multiple Sclerosis and CCSVI are two separate conditions, it is very easy to become confused between the two. In essence, they occur within the same part of the body and have very similar symptoms. It is also possible that one causes the other, or vice versa. These two medical conditions have been associated with the other since their discovery.
Before the recognition of diseases such as Multiple Sclerosis and CCSVI, doctors believed in all sorts of superstitions regarding the brain. It was not until the late 19th century that conditions such as Multiple Sclerosis, and other abnormalities of the central nervous system, were acknowledged. Soon, all doctors recognized the fact that mental illnesses are usually caused by disorders and injuries related to the brain.Multiple Sclerosis was first diagnosed in England by a man named Dr. Moxen. Slowly, more and more research was conducted on those who experienced phenomenons such as dizziness, numbness, and loss of control over bodily functions. But even in recent years, little information has been made available about the debilitating disease.
Before the recognition of diseases such as Multiple Sclerosis and CCSVI, doctors believed in all sorts of superstitions regarding the brain. It was not until the late 19th century that conditions such as Multiple Sclerosis, and other abnormalities of the central nervous system, were acknowledged. Soon, all doctors recognized the fact that mental illnesses are usually caused by disorders and injuries related to the brain.
Multiple Sclerosis was first diagnosed in England by a man named Dr. Moxen. Slowly, more and more research was conducted on those who experienced phenomenons such as dizziness, numbness, and loss of control over bodily functions. But even in recent years, little information has been made available about the debilitating disease.
When Italian doctor Paolo Zamboni discovered that his wife was victim of Multiple Sclerosis, he set out to research the condition and find a cure. What he discovered was that almost all patients of MS have narrow or blocked veins leading from the brain to the heart. Those with insufficient drainage of spent blood from the brain to the heart often had blood reflux back to the brain. This, he concluded, was the cause of the neuron damage that attributes to Multiple Sclerosis.He called it, “chronic cerebrospinal venous insufficiency” or CCSVI. This newly discovered disorder was diagnosed in some patients who had not experienced the neuron damage associated with MS. While Zamboni believed that CCSVI is the cause of Multiple Sclerosis, other medical professionals argue that it is quite the opposite. Perhaps, they say, patients with MS are simply very likely to have problems with their veins, as well.
Zamboni developed a procedure, best known as Liberation treatment, which involves the use of medical balloons or splints to widen the passages that drain the blood from the brain. These damaged veins were often found to be surrounded by lesions that are often associated with Multiple Sclerosis. When these veins were able to carry blood freely from the brain and central nervous system, these damaged parts of the brain were able to work correctly to send impulses throughout the body and control the functions of life as they should.
As for Zamboni’s wife? She has not experienced Multiple Sclerosis symptoms post-procedure, and is happily enjoying her life symptom free. About half of all MS patients experienced a complete elimination of all symptoms after opting for Liberation treatment. Within the United States, it is rare to find a doctor who is able to do the procedure, and it has been banned in many states save for when performed for the purpose of research. Many patients have resorted to traveled outside of the country to find doctors who are willing to perform the operation. They feel they have nothing to lose, and many have faith that it is the true cure.
So here’s the thing: the only person I personally know who went for a “Liberation” treatment (on his own dime) got a whole lot of nothing out of it. He had it done over Christmas and he has noticed nothing. Nothing bad (except for his drained bank account,) but nothing good. I think the mistake is in assuming CCSVI and MS are the same thing. Maybe CCSVI is just another syndrome that shares a bunch of symptoms with MS, to the confusion of everyone involved. Have you heard that old cliche “too good to be true?”
I love the fact that so many people are posting videos about how the intravenous stent treatment for CCSVI has truly “liberated” them, I love that it IS helping a lot of people, but it’s not helping everyone with MS. At first I was very excited about the treatment, thinking “Awesome! A cure! Everyone will be able to get their lives back!” but the more I heard about it, the more it kinda sounded like “snake-oil” to me. Yes, I tend to be a skeptic.
And yet I wanted it to work – I wanted it to be at least a step towards the end of the hold MS has on the lives of those who live with it. It looks like it IS that step for some people – maybe someday soon there will be another step, and another, and more and more people with different symptoms of MS will be set free.
I suppose there’s always a compromise between cost and quality of life if you have to pay for treatment. But what’s the cost for your quality of life?
In this video I continue the conversation I was having with Lisa who runs Brass and Ivory, a site chronicling her MS journey with links to a lot of other MS blogs, and Amy who runs MS Softserve, a soon-to-be-available NPO site offering customized learning about MS.
Just so you’re all aware, this video is a complete lecture so it’s just over an hour long. It’s very interesting and the speaker is quite engaging, though! He has some very different ideas, and I don’t agree with all of them, but it is entertaining to listen to him.
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Dr. John McDougall talks about the importance of diet and the effects it has on Multiple Sclerosis.
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I’m honestly not sure what I think of his ideas, but he’s obviously done a lot more research than I have. In my video about my MS treatment I mention that eliminating complex carbs from my diet has seemed to increase my energy levels, yet here’s a doctor encouraging people to eat a starch based diet.
So what do you think? Do you have any opinions or experiments you’ve done with you own diet that has seemed to have some kind of effect on your disease, whether good or bad? Please share your experiences by commenting below!
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If you are at all interested, here is a link to “The Multiple Sclerosis Diet Book” by Dr. Swank, the doctor that Dr. McDougall (the lecturer) called “his personal hero” and features as a video in his presentation.
Unhasty Misadventures and MS Adventures 