Nutrition and MS-Anecdotal Accounts

“I thought you might like an update on how well the diet is working for several of us. First, there is me, whose MS mostly affected my legs and walking and hobbled me with that tremendous fatigue. Well, in October, I hiked down the Grand Canyon, 2/3 of the way to Plateau Point and back up in one day. That was a 12 mile trek and covered an elevation change of 3000 feet each way. My only problem was sore muscles in my calves the next day–just like everyone else. The little residue of altered sensation is inconsequential and my energy is back.

My friend Bryon’ never had a major attack, I think because we diagnosed it early and he went on the diet right away–though it took a while to refine it and figure out exactly what he was most sensitive to. The official diagnosis was made by the Mayo Clinic one year later. Except for spring and fall, he is now able to run pretty symptom free. He just had an MRI and 5 of his 7 lesions have disappeared. He didn’t bother explaining to the doctor why. Deb, who has been working with the diet since March, is also improving. At her recent neurologist’s appointment, where he had told them she would probably have to start one of the ABC drugs, the doctor reversed his opinion in view of her progress and recommended no further intervention. She and her husband handed the skeptical doctor your essay. I have made a commitment to help anyone with MS who shows interest and as a result have sent out over thirty packets of information all over the country–my lobbying letters and your essay, essentially. I sent one to a lawyer from Boulder, Colorado who was the motivational speaker at a NMSS meeting. I have hopes that he will convert and become an activist. Hopefully, he contacted you. Through word of mouth of people who have seen my dramatic improvement, I hear from friends of friends who have the disease. Again, I’d like to thank you for your activism, it certainly has helped me. If there is any other way I can help let me know. (I am hoping for a little infusion of money so I can send some to MS Direct.)”

“I read your papers on your website. I don’t if you are looking for anecdotal stories, but I thought I’d email this to you in case you are trying to build a database of such information.

I have secondary prog. ms and was wheelchair bound for 13 years and began the gluten-free diet last January, 1999. I felt no improvement for three months and then I began to feel more stable. I had already gone onto disability because of the fatigue, double vision, and inability to hold myself erect for any significant and useful period of time. I was hospitalized with exacerbations approx. 3-4 times per year and treated with solumedrol for 5-7 days each time. This went on for quite a few years. This is my 12th month on the diet and I have been out of the wheelchair since September. No one is as surprised as me that I am free of the wheelchair. I cannot walk unassisted yet for more than about 100 feet. It’s not clear sailing. I have rocky days, I had a mild exacerbation in August, I lost vision, had double vision, my legs wouldn’t hold me, I became very weak, but that passed without my having to seek treatment. That was also a surprise to not even need prednisone.

There is definitely a great improvement in how I feel. I have been reluctant to associate my improvement with something so simple as diet, however, I can no longer not associate it. My reluctance had more to do with not wanting to be disappointed than pure skepticism. The “coincidence”, though, is too great. I cannot deny the fact that I am improving. I also enjoy the fact that I am improving and even feel the possibility of returning to work someday. I am an attorney.

My family doctor has been following my improvement with great interest and I have sent her some of the papers that are on your website. My neurologist has no interest whatsoever in the diet as a means of controlling the ms and has told me my improvement is purely coincidental and that I will relapse back to my prior state. I no longer discuss the diet with him.”

“I am on low fat diet since may 98 and on partial P-Diet (I eat some legumes) since January 00. At this time my two legs was weak (difficulties in the stairs), the right side of my body was numb, plus many minor symptoms and I had new symptoms 1-2 times/month. I was VERY afraid. Since that day of January everything stop! I’ve had 2 minor symptoms which have gone 2-3 weeks later. I have no more numbness in my body and my two legs are as before (except when I’m tired). I’ve had the chance to start P-Diet at the beginning of the disease. Probably that my symptoms was only inflammation and not destruction.

What’s happened on January 00? I’ve found Ashton’s recommendations on the net. All the time he’s spent to bring that information together has given me the health, the hope and more peace of mind day after day. The words cannot express all the gratitude I feel. Something is sure: My Christmas holiday that just started is quite happier than the one I would had had if I didn’t find about Ashton and P-Diet.”

“I was diagnosed with MS in 1992, and became involved in MS research in 1993. I was treated with several experimental medicines until their efficacy ran out in 1997.

In January 1998, an MRI revealed 67 enhancing lesions in my brain, the worst my neurologist had seen. I received many doses of chemotherapy for three months, and spent the rest of 1998 hospitalized by the side effects-bedsores and infections, one to the bone. I terminated my involvement in research and committed to a strict vegetarian diet when I returned home in January 1999. In August 1999, my friend, Cecilia, urged me to try a program she said was improving her health dramatically. I added her program to mine in September and by November, I felt ‘nutritionally complete’. A recent blood test confirms that my vitamin and mineral levels are normal.

My latest MRI scan on October 26, 2000 shows NO enhancing lesions in my brain! I am thrilled with DIRECT-MS, and will do everything in my power to raise the money needed. I am designing a website to share my experiences with our community. I thank you dearly for your work and I pray for the success of DIRECT-MS.”

“I have been on a diet that has been, if not the same all the time, similar to the Best Bet Diet, by Ashton Embry for over 4 years now. I say it that way, because, at first, I didn’t eliminate legumes and yogurt and just a little gluten from my diet completely, but I now have. (And should add that I didn’t eat much of any of those things, even in the beginning.) I sort of ‘reinvented’ the wheel with my diet, because I did all the research and came up with my own diet and then found that it was very similar to the one recommended by Ashton Embry. He has ‘perfected’ it for me. I heard about your list and joined, because it seems that it is similar to mine.

I have Primary Progressive MS and have had symptoms since at least 1993. I was officially diagnosed in 1997, after having already decided on my own that I must have MS, and started doing a lot of research on it, and begun the diet. The first year or so on the diet, I wasn’t doing all that I should have. I didn’t have all the information I needed and would occasionally stray from the diet, but never for more than a day or so, or meal or so, at a time. I continued to very slowly get worse MS-wise to the point where I couldn’t walk farther than two houses down the street, without severe fatigue, muscle spasms and stiffness. I’d have periods of dizziness and balance problems that would keep me from doing much of anything other than sitting or lying with my head supported. I had numbness and tingling all the way up my legs and including my buttocks, parts of my back and neck and places on my scalp. I had to take at least one nap, and sometimes two, a day. I almost gave up on the diet time and again, but kept referring back to Roger MacDougall’s story, since he also had PPMS and it took 4 years before he noticed any improvement in his symptoms. Finally, in the early spring of 2,000, I experienced dramatic improvement! By about the middle of April, I was starting to walk around my block and within a month or so, I had worked up to 1-2 miles of walking every morning. The spasms were all but gone, the numbness and tingling reversed back to only being in my feet and ankles and occasionally a small spot on my back/neck, and the fatigue was so much better, I could go without naps. The balance problems were improved enough for me to do alot of walking. I should also mention that, in May of 1999, I started Copaxone injections, but I don’t attribute my improvement to them, since they only slow progression of the disease, not reverse it. Although, there was a study that came out last year, showing that, after 6 years on the drug, patients are experiencing a 72% slow down of progression, from the original 30% the first year. (And some patients are starting to have symptom improvement after 6 years on the drug.) The improvements have lasted, and I’m about the same now. I still have some symptoms that I hope to get rid of eventually – still a little numbness in my feet and that one spot on my back/neck, an occasional cramp in my feet, minor balance problems and more fatigue here and there than a ‘normal’ person. But, this is all quite livable for me, compared to how I was just a year and a half ago.”

“Just keep to the p-diet religiously. In my case which is early 97 (Feb)dx I started the EPO very early n the p-diet also as early as 98 March after I had my second episode. Looking back I would say my MS was mainly b’coz of my large intake of dairy products which I have now stopped after Ashton’s intervention. So my tremendous improvement came after I quit dairy. Otherwise I was always taking lot of fresh fruits n vegetables n NO Meat.Even before the MS I was on a diet akin to the p-diet except for the large quantities of Milk which I loved.”

“According to your recommendations, I quitted eating the most difficult sensitive foods (corn and soy), but ignored the question of strenghtening BBB and solving all the problems with “leaky gut”. So there is no wonder I did not recover completely and suffered. In this March, when I decided to take the time and solve this problems, I purchased grape seed extract and huge amounts of Vitamine D [obeying the most recently revealed points], ate glutamine and Omega-6 (which I ignored too), and continued regular physical exercise. I discovered ! a small medicine center in Switzerland [www.serafin.ch, where the German translation was published on-line]. They made me sure they would help me to repair the “leaky gut”. So, for about six weeks, I have continously been doing what was right for me. After 15 months absence I visited my neurologists last week to do some control tests. I had to wait for three hours, although we greeted each other. They asked me once whether I was studying although I had my paragliding-handbook in my hands only. I was surprised. They did not recognize me. It was simply because they could not believe that I am who I am, who they knew for years. They believed I was one of their numerous medicine students. It is funny… There are still minor problems with my neck and therefore my balance, but what the matter is, I performed an almost perfect sight test with my right eye, where the whole mess started ten years ago. I even see the pixels on my notebook screen.”

“Hello! I was diagnosed with M.S. on April30, 1999 after a bout with optic neuritis. I was fully aware of Multiple Sclerosis as a co-worker of mine had a husband who suffered from this disease. My diagnosis was confirmed with an M.R.I. as well as a lumbar puncture. Having worked in the medical field all of my life as a medical secretary for many physicians, I knew that medicine was not “infallible”, and that I wanted to become involved with /or read about people who had this disease and who fought back. I told my neurologist at the time of my wishes and he honored them. Once my neuritis had cleared, I opted not to take any meds. Meanwhile, I went to the library and that is where I began my search for a better way. The first book I read was “Who said so!” which was about a woman who was diagnosed back in the 60’s and turned her life around with diet and yoga. I can’t remember the author’s name but that was the book that provided the affirmation I needed to go on. I then heard of the M.S. diet by Dr. Roy Swank, and after reading it, began the Swank diet in June of 1999. I also took supplements and eliminated all non-nutritious foods, no caffeine, etc. It was and still is a pretty strict but healthful diet. In about 6 months I had this tremendous energy, was losing an average of 1 1/2 pounds a month ( I have lost about 25-30 pounds since the onset), completely obliterated any menopausal symptoms that I once had, even to the point of eliminating my estrogen replacement. (I have concocted a fruit smoothee that I take every morning which include soy isoflavones . I call it my “Fix”) I have not felt this wonderful in many years. I work a full time job in a surgeons office, I have not missed any time from work since I was diagnosed 2 years ago. I have not had any colds this past winter. My overall health has been tremendous. I have not had any exacerbations, even when I went through a dissolution of a marriage of 26 years duration, sold my home and moved into an apartment with my son the end of last year. I saw my neurologist back in May and she gave me a clean bill of health and told me to continue doing what I’ve been doing. During the course of this year, however, I have included some aspects of the paleolithic diet. I no longer take in any dairy, egg yolks and very limited sugar. I find that I get a small reaction when I ingested these, like a little tingling in an arm or a leg. Since this elimination, I do not get any symptoms. I do Tai Chi, and I walk 3 times a week on a track. I have done some Yoga in the past as well.

I also, like many others before me, have been transformed by this disease.

I enjoy life on a daily basis, I take time for me, and read some wonderful spiritual books that have enlightened my path. I am grateful to God for having had this experience in my life. It has opened my eyes as well as my soul and I am a better person for it.

I’m sorry if I have become too wordy. I get excited about how the diet has given me such a wonderful quality of life. It is miraculous and I am sorry that I have not written to you before this. Thank you for your research and I would be happy to answer any questions that you might have about my regimen.”

“I suppose I could be listed as one of those whose life has changed for the better thanks to Ashton Embry’s research and info regarding Diet and MS.

I was diagnosed over two years ago, am almost 44, female and had several bouts of optic neuritis (blurred & double vision) vertigo, dragging left foot, stubbing toes, slipping on stairs etc., etc., blah ,blah and you probably heard it all too often .

I visited a naturopath in Calgary (I live in south west Alberta-formerly from southern Ontario) and he got me started by eliminating processed & fast junk foods and STONGLY suggested I quit the 3-6 cigarettes a day I had gotten myself down to .

After reading Ashton’s best bet treatment paper, Robert McDougall’s story and the paper on vitamin D as well as the books by Judy Graham and Eric Weil, MD I began changing my diet and took homeopathic drops to eliminate candida and parasites from my blood. I did the eliminate/re-introduce/eliminate method of determining food sensitivities and no longer eat beef or pork and eggs. I use Rice dream on cereal, feta cheese on a daily luncheon salad including pumpkin seeds, alfalfa sprouts, sunflower seeds and raisins. I have one slice of toasted sprouted wheat bread only each day and have otherwise stopped eating anything with containing wheat flour. I have tried some of the recipes for buckwheat pancakes, molasses cookies etc. that I found on the website of gluten free recipes.

Now for the great news. I have been relapse free for over 15 months. I am slowly building up my muscles from the weakened state they were in two years ago and last night I went for a two and one half hour ride on my little horse that I bought last year for mind and body therapy. I know I will likely never show again (jumping-dressage) but if I won any money I know that I would send most of it to MS-direct for the much needed research into the dietary connection. I belong to a MS message board out of the US and I am trying to get the point out that diet may be the key. We need to get the word out that the synthetic interfurons and amino acids used in the ABC drugs that so many are taking are NOT the answer.”

“I am really happy to greet you and tell that I am keeping to the nutritional changes you advise. The summary of my last year experience is as follows: for more than 7 months I was walking leaning with the cane but 3 months ago (immediately after I took to the changes again since I had not used it for 9 months 09/2000 – 05/2001) I quitted the cane and managed to walk during the hot summer, recalling the cane quite occasionally. I am getting used to forgetting about my disability. There’s something to consider. Since December 2000 I’ve been taking Copaxone on a State Medical Programme; but there had not been any changes until I restarted (now I know that the most difficult are the first 2 months of fruit-vegetable-fish diet) eating on your tips 01 June. One can see it hard to say whether copaxone or the nutritional changes caused the remyelinization. I understand it like this: copaxone managed to stop active demyelinization (divert the immune system autoattacks) and the diet was able to exclude provocations for the immune system which led to the seeming improvement. Anyway, I am well enough to be going to attend the MS International Conference in Melbourne from 30 September to 05 October that is in two weeks. I hope you’ll take your time and visit Australia where I look forward to meeting and thank you in person. Thank you for lengthening my active life!!!”

“I’m following the BBD since January 2000. Before that, I had “little” exacerbations very frequently (each 2-4 weeks) for 5 months before I found DIRECT-MS website. 1 1/2 year after my first symptom, I could no more run, I had difficulties in the stairs, I was numbed almost everywhere, I was no more able to do roller skating, my favorite sport, because of balance trouble. Since then, MS has stopped its progression. 22 months latter, I’ve healed 98% of the damage. I’m almost as before. During the summer of 2000 my balance was not good enough to skate but this summer it was fine. In May, I jumped in my roller blade and I was skating like hell!!! 🙂 When I decided to search for a solution to control my MS in 1998, I told myself: “To win the fight, you have to stay two years without new exacerbation.” I had my last one at the end of December 1999. Now that I’m very near of my goal, it looks like all the tensions are coming out. I cry regularly thinking about the luck I had to found your papers and what I would be if I didn’t.

That’s unbelievable all the work you’ve done. All the time you must have spent to bring this information together. It has certainly had a cost: less time for your family, less time for your friends, less time for you.

For me, it was long just to read the papers on your website! 🙂 Each day your name makes part of my thoughts. I’m wondering who’s that guy who decided, by him-self, to cure an incurable disease? Why did he do that? His son? Well, almost everyone with MS has a father! No matter why you decide to make it, I’d like you to know that I’m very, very grateful for that. I was so scared. It gave me hope, it gave me joy, it gave me health, it gave me a future. Thank you so much for the sacrifices you’ve made. The words cannot express my gratitude.”

“I’ve had M.S. since 1993. Actually before, but that was when I was diagnosed. They had me try all sorts of meds, every ( abc) drug. They all made me feel so sick!!! So I decided to take my health into my own hands, and look at my diet.

What a difference… No dairy, red meats, grains etc…

My M.R.I. started to come back unchanged and all. Its been great. I just wanted to let you know.”

“Thanks for the great info on your site. I have MS. I couldn’t agree with you more. Two years ago I had an Elisa blood test for food allergies. I am allergic to wheat, dairy, and a bunch of other foods. I avoided those foods and felt a whole lot better. I just recently climbed Kilimanjaro in Africa.”

“We received verbal results on my wife’s MRI and the word is ‘No significant changes from the last MRI’. Now we haven’t see the actual report or view the films yet, but this sound like good news to me! Two years with no progression is good. Her neurologist is very interested in this since it is concrete proof of what we have been saying all along. We will be meeting with her soon to discuss this further. This is her third MRI. The first was when she was diagnosed with MS, the second was about 2 years later, where she was doing nothing for one year, after which we learned about the diet connection. So the second year was with diet: there was minor progression. Now we have a solid 2 years with diet and Vitamin D supplement for one year, and no progression. Pretty good, eh?”

“GREAT NEWS! Yesterday, I finally had my follow-up meeting with my neurologist after my MRI in December. I’m getting a big stamp on my medical file that says: NOT MS! He showed me the MRI films of my spinal cord and brain and I could barely see the mist around C5 and C6 that was the remnants of the lesion seen on my first MRI (which was destroyed last year – aarrgghh!). The one spot in my brain seen on the first MRI was just not there anymore – and I didn’t even have as many signs of general brain atrophy as most people my age. He also showed me the films from someone with definite MS and the lesions in the brain were many and obvious. YAY! My neurologist probably attributes my NOT MS diagnosis to chance, but I know that the diet revision you led me to had a huge part in preventing my second diagnosis from being “MS” instead of “NOT MS”. This makes me all the more anxious to get the word out about dietary revision and vitamin D to others – especially those newly dxed with “possible MS”. Let’s get the show on the road!”

A cautionary story – “My wife has had MS for about 18 years now, since she was 29 years old. She’s not doing especially well right now.I discovered Swank’s MS Diet book immediately after her diagnosis. Then we also started dabbling with Natural Hygiene. After about 9 years we were able to forget she had MS and slack off on the diet, until it returned with a vengance with two attacks in two years. One attack affected her right side and the other her left. We returned to more of a loose Natural Hygiene diet, but the weakness on her left side and some balance problems remained. After about 8 years we had gotten used to the fairly stable weakness/balance problems and again slacked off on the diet. Recently she had a flare-up that affects her speech. In addition to the above symptoms, my wife always has for the last 10 years had very little energy and never has an appetite, although she gets weaker rapidly without eating.We are again in earnest about renewing our commitment to recovery through proper diet and somewhat regretful and ashamed that we have allowed things to get as bad as they are.”

“I am sitting here at work on my birthday getting all weepy-eyed at the changes this year has brought. Last year on this day, I went out to dinner with my in-laws at one of the nicest restaurants in town scarcely able to use a knife and fork, hardly able to talk, taking great care not to choke because I was having difficulty chewing, walking with a cane (barely), and too depressed to carry on a decent conversation. It was a few months after that that I found the BBD and all of you. Today I am well on my way to complete recovery. I can walk – even jog for several feet. I can eat. I have plenty of energy to do yardwork, care for (and wrestle with!) my darling little boy, I am working full-time and moving up the ladder at lightning speed. I have lost about 25 pounds, my skin is clear, and I must say that I am looking good! I am convinced that I will not go back to that dark place I was last year.”

“My testimony is a long one but I will sum it up. In 1997 I was diagnosed with MS. I was very sick with a full page list of neurological symptoms. My husband now says he thought I was dying. The doctor recommended a hospital stay with a course of ACTH.

Through much prayer and research I opted to take the natural path.

The thing that encouraged me most was the Roger MacDougal Diet. Ever since I was a child I suffered with severe migraine headaches. When I learned of the diet and stopped the dairy ( I had been a huge dairy consumer) among other things, the lifetime of migraines was gone. In conjunction with Traditional Chinese Medicine I completely changed my diet and whole-heartedly believe that my body is to sensitive to consume processed foods as well as animal fats. If I dare to slip from my diet even for a mere moment I can immediately feel the change in my health. As a matter of fact I feel better than I ever have and just want to say thanks for helping me see the light. By the way, I have made my opinions known to the MS Society but unfortunately at that time they didn’t seem interested.”

“Hi everyone! I’ve been on the BBD for around a month now. I’ve been reading your emails daily, learning, and practicing. I finally decided it was time to come up for air, so to speak, and introduce myself.:-) I was diagnosed with PPMS in Jan’95. Like many of you, I researched and tried different diets. To sum up those first several years, I knew I reacted HUGELY to food, but could not figure out a pattern. Also, I knew fats were a problem for me, and I researched that a lot, including Erasmus’ (sp?) book, but I couldn’t figure out how to apply it!, and nothing I tried seemed to work. Around two years ago, I stopped trying. I went into a survival mode, just trying to keep up with my job, etc., as my symptoms continued to worsen. I had a desk job, so it didn’t matter when I ended up using a walker.

By March of this year, I was in pretty bad shape, and I quit my job. My speech often slurred, my right leg dragged, my right arm was very weak, and I was generally VERY weak! For the first month, I remember not even being able to read because it was too difficult to hold a book.

Two months later, I had not improved much, which was really discouraging to me. Rest hadn’t seemed to help.

One day I found Ashton’s web site. Wow! I could hardly breathe as I read it, because I couldn’t believe what I was reading! He filled in all the missing pieces to my puzzle! I had my Elisa blood tests done, and started on the diet. In one month I have seen big improvement! The major improvement is that the jumpy/crawly sensations that were so strong they were almost painful have completely stopped! It’s so wonderful to know exactly what you are allergic to, and not have to wonder! Besides allergic foods, I think sugar was a major culprit with that symptom! The second improvement has been in my strength. This comes and goes, but there is one exercise I’ve always done at home since I had a trainer a few years ago. In March I could only do 10 reps., and frequently in the past week, I’ve been able to do 20×3 reps-STRONGLY! I haven’t EVER since my training a few years ago, been able to do that many reps! I’m being very strict on the BB diet, because I know I have a long, hard road ahead of me, and I want to do this with my full effort. I’m keeping things simple, eating ALOT of fruits and vegetables, and juicing almost every day. Even though I’m not allergic to gluten or legumes, I’ve avoided them. That is one question I’ve had- do you guys only avoid what you’re allergic to? I wasn’t sure if I could lighten up on that or not.

One thing I’ve always known about myself- I react VERY badly to negative factors with my MS, and I believe I also respond VERY favorably to positive factors. I think that’s why I’ve seen immediate improvement, which I believe will plateau quickly, and then comes the long, hard road I was talking about.

A few weeks ago I went to a “big-shot” neurologist at a university, and he offered me IV steroids monthly, and if that didn’t work, chemotherapy. That was my only option. I thanked him and left, knowing that was going to be the last neurologist I would choose to see. I decided I was going to turn my back on “hopelessness”, and dare to hope and dream again. The BB diet, and you all at the support group, have given me the inspiration to do that! I want to thank those of you who wrote articles for the web site. They’ve been very helpful! I was excited to read that someone donated money in Canada to research the BBD, and that the Rocky Mountain center in Colorado may be interested in researching it. I live in the U.S. Have anyone of you who live here written anyone, or do you have a suggestion for who I can write?”

“Wanted to share some good news – six months on BBD and guess what! I feel great! So many improvements – but the one that really AMAZES me every time I look down at my left hand – is that after TWO YEARS of CONSTANT pins and needles and clumsiness…. IT IS GONE!!!! (Been gone for two weeks now…) The neuro told me quite clearly that this particular problem was PERMANENT caused by myelin/brain damage – HA! Stuff him and his amazing ‘knowledge’ – we know something he doesn’t…

I was a cynic (oh yes I was!) I didn’t believe it could really change my ‘terrible fate’…. and the diet was difficult, but I found BBD very early and I seem to have been able to stop all the DAILY grinding that MS did to my body. So to anyone who has just found BBD – GO FOR IT!! And to all those who keep this site going so strong, a BIG THANK YOU, from my heart, from my boyfriend, from my 6 year old son, from my devoted labrador, from my friends, from my mum, from everyone who says they are so happy to see me smiling and enjoying life again. I plan to stay that way too! 21. I hope you are getting the funds together that you need. I continue to feel great on this diet and supplement regime. You have changed my life profoundly. I am able to continue with my PhD, and that would have been impossible had I not improved.”