Hello all! It's been awhile but I wanted to pass on an update to you. My Mom, who also has MS (diagnosed about 15 years ago), started the diet about six weeks before I did (January of this year). She has been plagued with painful peripheral neuropathy in her feet for the past few years and was on Cymbalta, Lyrica and topical pain patches. She stopped taking Cymbalta and using the pain patches - hasn't needed them for a week. Next step is to talk to her neuro about weaning off of the Lyrica.
Hooray for the MS Recovery Diet! The progress is slow and steady - and Lord knows it's teaching me to dig deep and find some reserve of patience I didn't know I had.
Patty Gruber - Yes, I'm trying soil based probiotics. My trainer tells me they have more antioxidants and amino acids so they're very good. They're better because the soil foods of today are grown in are depleted of these probiotics so you don't get them from the food we eat.
You may want to contact Ann and Judi to see if there is anything you can do to tweak the diet. I just did, and although I thought I was doing a good job of following the diet, Ann had a few suggestions to guide me in making some necessary changes. Namely, I was eating too much fruit and starch. Ann responded to my emails very quickly and is truly helpful. Good luck!
Hi folks. I appreciate all the positive comments. I too get discouraged from time to time. I started the diet in March of 08. That is 14 months ago.
I was diagnosed 18 years ago. It's been a slow progression for me. Only in the last five years have I needed a cane. I can walk short distances. Like a block. But slowly and carefully. Stairs are very difficult.
I'm not sure if I notice any improvement. Some days I think well maybe it is a little easier. But then other days I'm sure nothing has improved.
My dream is to be able to go on brisk walks again.
I have been religious about the diet and don't cheat. I use an exercise machine at the gym 3 times a week and yoga as well.
I just wonder if I'm doing something wrong. But I don't know what?
Please keep the positive stories coming. I need to hear them!
Thanks,
~Retta in Kansas
I was told to order soil based pro-biotics by my trainer. I'll have more information when I receive them in the mail. They're coming from England so it should take a few more days.
hi patty , ive been on the recovery for about 1 year now , i have to admit it may be a drasyic change of diet but i know its making a difference in my body , it will take quite awhile to adjust to this change but i find it best to think of it as a lifestyle change , just like when we got diagnosed , now thw hard work starts , it gets better after a while . as your tastebuds calm down enjoy the flavors of the food in its natural unrefined state , remember this , refinement of our food is what caused our trouble , unrefined food will help you , refined food will harm
take care and good luck
ken
I've been on the diet since 2/14/09. I'm really not seeing any change yet and I'm trying not to get discouraged. I was diagnosed 11 years ago and I know I won't be better quickly. I'm still sticking closely to the diet and continuing to work with my 2 personal trainers and my physical therapist. I have a lot of people cheering me on and praying for me. I ordered some soil based pro-biotics to try and fix my digestive system. I'm hoping doing that will jump start my recovery. If anyone has any other ideas, I'd love to hear them. I'll just keep on plugging away because I believe this is the way for me to go to be healed.
Hi Susie
I eat fruit and drink tea everyday, I don't know if that is a good thing or not. I do not limit my number of of grains but I only have about 2 or 3 servings anyway. I have eliminated glutens, legumes, dairy, eggs, and yeast;however there may be trace amounts of yeast and soya in some foods I eat. I limit my sugar and fat intake, I never add sugar to anything. I prepare all of my own food so if I need a fat for cooking,I use olive oil. I eat alot of vegetables, and i like to snack on nuts, and dried fruit. When I do drink coffee I drink regular.
Do you think that drinking decaf helps your recovery or does it allow you to sleep better?
Resting of course, is very important to recovery but cafine doesn't keep me from getting my rest.
Yes - I do have fruit, occasionally - like yesterday I made a smoothie with blackberries. But every once in awhile, in small amounts, I seem to handle it ok. I'm not exceeding the recommended amount of fat but I do limit grains (no more than 1 or 2 servings a day). And I am caffeine free now, except a once weekly treat - a mug of decaf coffee on Sunday.
I just love the picture of you! It's fantastic that you have already improved. You look so happy and positive! Are you on the strict diet where you do not eat fruits and limit oil amounts and coffee?
DONT GIVE UP , keep imagining yourself on tht bike , remeber that the damage your body is trying to deal with is great and it will take all of your patience to cope , be patient , you will win but it takes time.
stay strong and be brave
ken
Jearod - if you're asking me, I am happy to share...
Background: I am 31 and I was diagnosed October 2001 (after a bout of double vision that started three days before my wedding and one year of visiting a couple of neurologists). MS kicked my ass pretty steadily - 3 to 4 relapses a year requiring steroid treatments. I started on Avonex then switched to Rebif, Copaxone and Betaseron. 3 years ago this August I started Novantrone in addition to Betaseron. Novantrone is an awful drug; basically poison BUT I've been in remission since I started it, so I don't feel like I can complain too much. And who knows where I'd be now without it. I reach my dose limit in about a year but I know it won't matter because I'll be well on my way to recovery...
Alternative therapy-wise I tried the Swank diet, albeit half-heartedly, about 5 years ago (I'm Italian; I love to eat - I was a sugar hound - if you gave me swedish fish or a caramel sundae I was a happy girl). I've also tried LDN and Manuka honey with bee venom in it. After those experiences left me with nothing, I started to believe that if "it's too good to be true, it usually is".
In the first year after my diagnosis I (very) quickly needed a cane and I started using a wheeled walker in 2005 after a bad fall. My upper body is very strong and the lower half, not so much. I walk like a wobbly toddler when I don't have my walker to lean on to. I now have a scooter for trips outside of the house and hand controls on my car 'cause I don't trust my feet quite yet. I've made countless concessions, adjustments and revisions to my life because of this disease. So, when my mom (who also has MS) brought the book to me I thought, "I'm willing to put all of these drugs in my body, but not change my diet?!" Seemed like a no-brainer.
God bless Ann and Judi - they have been so available to me; answering all of my neurotic questions, even taking a look at my food diary. Before I decided to start this, I sent them a long ol' email full of questions and skepticism. That was before I even had my copy of the book!
I decided to take a strict approach because I'm so compromised - on Judi's recommendation. Lean protein, veggies, one MAYBE two servings of some kind of grain (oatmeal for breakfast, pizza with millet flax crust, etc). I use stevia to sweeten my oatmeal - one packet, tops. And no fruit. There were some times I had fruit because I was traveling and there was nothing else I could eat or it was a special occasion (i.e. on Easter Sunday I splurged and had 5 blackberries... yum!) But I do notice that sugar is a trigger for me. Also, I can't have a lot of corn in one day or that affects me too.
The results: two weeks in, my legs and feet which were up until now pretty much numb started to buzz and tingle - kinda like how your limbs feel when they start to wake up after being asleep. THAT HAS NOT STOPPED SINCE - and I'm about to start my 12th week of the diet. Also, I had my husband do a "safety pin test" on my feet that they did in physical therapy last summer - basically, you close your eyes and they (gently) prick your feet with a safety pin and you have to describe to them what part of your foot they're touching. Last summer I told the therapist, "I have no idea where you are, you could be pricking the mat I'm laying on." When my husband tried -I FELT EVERY SINGLE PRICK and could describe where he was on each foot in detail. So, something is happening! It's enough subtle, incremental changes to keep me moving forward.
In addition to my dietary changes, I've also started exercising 3 to 5 days a week. Supplement-wise I'm taking probiotics, vitamin D, calcium and magnesium, and I use flax seed oil in my salad dressing - in addition to my prescription meds. I do have a glass of wine or gluten free beer on occasion and I am caffeine free, except on Sundays when I splurge and enjoy one cup of decaf coffee.
They say it takes 30 days to form a habit and I am totally committed to this - it's a lifestyle change. I feel good, I have more energy, I sleep better and I've lost 13 lbs without even trying! So, there you have it!
Stick to it, it's so worth it! If you ever have any questions and you want to contact me directly, you can reach me at: susieu@gmail.com.
Susie,
I just looked at the photo. Absolutely amazing. It literally brought tears to my eyes. I think you look like a million bucks. Keep us posted and keep doing all you're doing.
All the best from Montreal,
Teena Marie
Thanks! When I first started the diet, I had my husband film me walking down the hallway to document my progress, too. I did another film a few weeks after that and I plan to do one shortly. Eventually I'm going to post them on YouTube so everyone can see!
Proof!
Here's a picutre of me from Saturday: standing without holding on to anything! (I know I look kinda goofy, I'm just really excited) http://farm4.static.flickr.com/3587/3458643949_5b8885e7a0_o.jpg
11 weeks in and I can't wait to see all the other good things that will happen. Thank you, Ann and Judi, for sharing your success with everyone!
i started last june , it was hard at first but then you play little games with your self like lets give it a month and see what happens and pretty soon its 2 months and you start to notice small changes , no one else sees them but you are starting to feel it ,i am finally sleeping more than 3 hrs at a strech ,when i started i was lucky if i could sleep for an hour . as well my enerjgy level is increased dramatically , i no longer feel the overwhelming desire to sleep all the time . and my back isnt burning all the time .
keep it up and you will slowly improve
ken
Please post more updates! I need encouragement - I understand that it's going to take some time to undo the damage that MS has wreaked on my body for the past 8 years. But I am not a patient person by nature and I'm struggling with that. The diet is going great, and on a side note I've lost 13 lbs! I keep telling myself "when I'm recovered I'm going to buy a Schwinn Cruiser so I can ride around my neighborhood in style" so here's to hoping!
hi everyone , i have been doing the diet faithfully since june 25/08 , i feel that progress is not so noticeable at first but ive felt an increase in my energy levels , i was diagnosed in 05 with ppms , i floundered asbout for the 1st 3 years then i started this diet and it is slowly changing , i recomend using a good liquid vit d like d drops as it is highly absorpable, keep reinventing your diet and just hang in there i feel the 1st year is the hardest as we are re learning a lot of bad dietary habits that have led us to where we are now .
take care
ken
Hi all,
I want to report about my progress.
I have had MS for 16 years now, fortunately of a mild type (three exacerbations within the first 12 years, mild and self-curing). I started feeling some permanent problems 4 years ago (fatigue, a slight loss of balance when going down the stairs, a weak right side when walking, occasional stiffness of legs, a late right leg when changing direction). It was then that I decided to do something about my ailment, because before that I was in denial (not wise of me, I know!).
I have always been on the healthy side of nutrition and on the alternative side of medicine. I never used any traditional drugs. I tried homeopathy and regular exercise of several types. Two years ago I went on the BBD and started taking most of the supplements recommended by Ashton Embry. Fatigue improved greatly. One and a half year ago I went on LDN and felt no difference. I stayed on 3 mg/night for more than one year because on 4.5 mg I had some side effects. I am underweight and thought that this might have to do.
Last December I read the MS recovery book and was tested for food allergies. I excluded from my diet all foods I am intolerant to and added fresh vegetable juices and ground flaxseeds to my daily routine. Together with the nutritional approach, I started yoga exercise. During the first two months on this regimen, my health condition had many ups and downs but by the third month I felt a great improvement. Fatigue, loss of balance and stiffness have gradually disappeared and very rarely do I feel a difference between my two legs. Sticking with the diet is not difficult for me, since I am the opposite of a greedy person. The social part is more difficult, since people don't see why a thin person like me should be on a strict diet, but I don't mind.
As I was feeling better, I tried a mild colon detox (with herbal teas) and felt even better. This encourages me to go on a liver detox with herbs. I plan to do it next week. I have to notice that last January I was able to raise my dose of LDN to 4.5 mg without side effects and I suppose that my new diet has to do. Besides, I was able to cut down on my supplements according to my holistic doctor's advice.
I am thankful to the dietary approach to MS and hope I will keep up the good job and the good health. I encourage everybody to be patient and stick with the diet. Every organism works on its own pace and needs its time and encouragement.
I hope this helps and wish the best for everybody's health.
ippokabos
I started the diet on Valentine's Day. My husband has dinner with me each night and really enjoys what I've prepared. I'm experimenting with new recipes all the time and so far they're all winners. As long as they have lots of flavor it doesn't matter that it's a diet.
The only improvement I've seen so far is to my bladder. I can go for longer periods without any accidents. My walking is not getting any better yet and my stamina is still very bad. I'm making sure I keep positive people around me. I have 2 personal trainers and a physical therapist who all cheer me on and keep me moving. Can't wait for the day when I can throw away my cane.
Can i just give a huge thank you to everyone who has responded to this post, and thank you Lazer it has just given me a huge boost to know that everyone is so supportive, and even better to hear that many of you are improving!!
I have been angry with myself for giving in to a few temptations, but glad because it highlights how easy the old symptoms can creep up on you again. I have`nt given in totally, but a recent stressful period knocked me off balance, but i feel more determined than ever to get back on track, a healthy diet is a much better option than a wheelchair.
Thanks again everyone for the much needed support!!
Regards Sarah.
I've experienced insomnia for years...waking up at 1:34 a.m., 2:30 a.m., 3:30 a.m. and not being able to fall back to sleep without terrible nightmares. However, the Good News is...since starting this diet, three weeks ago, I am sleeping all night until 5 a.m. Obviously something that I've eliminated in my diet, and I've eliminated all the foods required, was interfering with my sleep patterns.
I'm 64 and was diagnosed in November with MS. I'm 5'6" tall (on a good day!), 143 lbs. (I've lost about 5 lbs on the diet) and working full time as a secretary. I found the elimination diet fairly easy since I did go on a similar diet when I was in my mid 50's and having a "hell of a time" with menopause! Worst time of my life! I'm now feeling better and hopeful.
I started last April, partially, went full on by July. My head and neck pain are much better, headaches less frequent, less severe. The movement in my left hand is stronger and less spastic. Any numbness I had (ribs and, occasionally, in feet) is completely gone. Last month, for the first time, I was able to soften my left knee (couldn't before because of spasticity) while exercising and have been able to do so since. In fact, my exercise routine has gotten much stronger. My energy is better. My balance is better and I don't fall as much. I never had big issue with bladder control, but that seems better, too...less urgency. My walk is still bad, use trekking poles, but my physical therapist thinks a lot of that is bad habit resulting from repeated sprains on my "good" side. Sometimes, I get really discouraged that walk is still bad, stairs still so hard. I'm still waiting to be able to use alternate feet on stairs, rather than leading with good foot. Can do it sometimes, not often. I last week started to test eggs in my diet, and I don't seem to have trouble with once a week usage. Found brown-skinned potatoes and bananas bad, red-skinned ok. Am very strict on diet. Discovered the grain quinoa, nice change from rice, and found a French dark chocolate at Whole Foods w/ no soy lecithin. Too much refined sugar causes headaches, but occasional sorbet is ok.
Hi everybody: 2009 is the year of healing for all of us, you too Sarah! do not give up! I gradually removed the possible trigger foods from my diet over a period of two months. To me it is an opportunity to try new foods and eat things i just didn't before. I love food and I am dedicated to this diet and what ever can improve my general health. I've done a lot of my own research, as well as the information in the book, to make sure I get ll the proper nutriants in my diet.
The one big improvement for me is not being constipated all the time that alone improves my quality of life. I do have more energy. I usually have to stop any task after about 20 minits but today , i was cooking for over 2 hours! Thats really good for me!
We got to encourage each other
don't look back
just give it your best!
I was diagnosed with RRMS on 29th of Dec 2008 following optic neuritis, numbness throughtout 80% of my body at its worse, and extremely uncomfortable hot and cold patches.
I had known myself that it was MS from the beginning of Oct , I developed the fault in my eyesight (with the wonderful stabbing pain!)and the soles of me feet went numb, and I looked up the symptoms on the web. My choices were MS or a tumour- it was odd to actually hope for a chronic disease I can tell you!
I spent October and November worrying and crying mostly, then in December I decided to take action. About a week of research lead me to this diet. I didn't actually read the book until January as I knew that I would have to cut out a lot of my yummies and I was looking forward to Christmas! lol
I went for it 100%, cut everything out, no cheating. Within 3 weeks the numbness (which was previously covering about 50% of my body) went down to being on my palms and soles of my feet. The optic neuritis, which had been improving (but very slowly) suddenly jumped until I only noticed a difference in my eyes when I was tired. But I think the best thing was my energy levels, until that point I was sleeping about 10 hrs per night and having to take a 1-2 hr nap in the afternoon. Now 2 months down the line I have a nice 7-8 hour sleep at night with no naps at all! I actually feel back to being 26 instead of 86!
A lot of people (MS nurse, neurologist, MS Society forums) keep telling me RRMS is supposed to come and go and its unlikely the diet is doing anything. My response is- I know its works because I did push my luck once. Having been told caffeine was a nono I thought I'd be a smart a** and have decaff- having gone a month without I must have had about 8 cups in 2 days! The next day I woke up and noticed a weakness in my left leg, I could lift it but could only hold it up for about 5 seconds. Having never had a weakness symptom before I almost fell apart. But instead I analysed what I had been consuming and the only wildcard I could find was the coffee. I immediatly cut it out- within 9 days the weakness was completey gone.
After having 5 months off work I went back to work part time on the 12th of January (I work for a call centre), every week since then Ive upped the amount of time Im there each week, first by 15 mins then by 30. In about 5 weeks Ill be back up to full time, and I honestly cant wait. After all that complaining I used to do about work I now am grateful for everyday that I can get through with a smile on my face.
I plan to stay completely strict for a year- absolutly no cheating. Once that year is up Ill start systematically trying a known 'trigger' food to see if it affects me. I plan on getting a scratch allergy test to help me narrow it down.
Ive recommended this diet to few people and I was completely honest. Yes it can be a pain, no you cant have that, or that, or that, and definitely not that! But if you can get the results- who cares if you have to read the label before you buy it?
I know its hard, believe me as a self confessed chocoholic it is extremely hard. I get through it with visualisation- I picture myself eating a big box of beautiful milk chocolates, can feel its sweetness on my tongue and sliding down my throat. I can see the ecstacy on my face...but then I pull the camera back and Im enjoying that lovely box of choccies sitting in a wheelchair. Suddenly all my previously favourite foods dont seem quite so appealing!
Im currently training to do the Cancer Research Race For Life which is, for those unaware, a 5k walk/run. I do plan on walking it, even before MS I was never what you'd call fit! But it makes me feel good to help others regardless of this stupid inconvenient disease.
I think the most fantastic thing about this diet is that I feel like Ive regained the control of my life that I felt MS had taken from me. And being a rather particular control freak that means everything to me!
I do hope that everyone has the same results that Ive had and hope to continue. And if you know anyone else with MS please recommend it, what have they got to lose? Except perhaps, a wheelchair.
Way to go, Ken! In less than a year. Congratulations.
I use a lot of messaging to get things reconnected. Sometimes (for instance-lifting my left leg) I send the message I'm lifting it 3 times and then the 4th actually lift it.
I walked part of the way home after a swim. Finally getting a little milder here in Montreal.
hi everyone , ive been doing the diet since june 08 and i am now finally feeling a specific change , this morning i actually was walking around my place and standing at the counter doing some cleaning , i really feel good about this and i know its working but you must stay true to the diet it is key to healing ,i have primary progressive ms and was sliding down the slippery slope to hell when i started this .
BE STRONG AND STICK WITH THE DIET, you will improve.
ken birzneck
Ok, I've been at this for four weeks now - and the first 3 weeks I notice exciting improvements in sensation (my feet and legs). And starting last week I noticed that I was going to the bathroom less b/c (TMI warning) I was peeing more, volume-wise. BUT - that also appears to have its down side b/c I've actually had a couple of night time accidents. This past Saturday, I noticed my legs felt weaker and that feeling has stayed - I fell yesterday; my legs just gave out so now I'm nursing a sore leg. I'm exercising 3x/week - I have a pedal exerciser like the ones in Physical Therapy clinics. I do 15 min on my legs (have to kind of push them to move, but it's better than nothing) and then put the exerciser on the table and do 15 on my arms - so I'm getting a full 30 minutes of cardio. And to boot, I've lost 9 pounds!
I think I'm going to start using some of the exercises in the book. The diet is going great - 4 women I met at a NMSS social gathering that are all in their early 30s like me came over Saturday and we had a potluck - all MS Recovery Diet foods. All of the food was delicious! I have eliminated all sugar except for what's in rice and veggies but I keep finding soy lecithin in ingredients (Almond Breeze almond milk for example) so I guess my in-store label scouring isn't as thorough as I thought it was. But Almond Dream (same company that makes Rice Dream) doesn't have soy lecithin in it so I plan to buy some in the next couple of days. And make sure you get *unsweetened*.
2 things I miss the most? Coffee and ice cream. But I'll suck it up. The pros outweigh the cons! My mom is doing the diet too (she has had MS for over 20 years) so I have a partner in crime. My dad is doing it with her, but my husband is not doing it with me - which hasn't been a problem at all, maybe b/c it's just the two of us.
Sorry for the long post, but I thought I'd give a full report!
hi carol , i know the road seems long but it is doable , i have been on the recovery since june and i feel now that i am fnally feeling small improvements , i still use a wheelchair but the fatigue and spasms have lessened ,just remeber those trigger foods have to be avoided at all costs , watch out for lecthin its made fron soy and that stuff is bad for msers , follow the advice carefully just stay with it ,. i make fod for my sons and they make such faces when they see what i eat , i am doing this so i can stay strong for them . get some hemp hearts and mix them in your food in the morning, i also drink fresh carrot juice ,
hang in there
ken
Hello all,
It's a tough go. My recovery feels like it's moving at a snail's pace. Sometimes, I get in touch with trying too hard and try and get into the now of the situation. One thing that has really helped me most recently is talking to my body. I actually say things like "here, let me help you" and try to think of not bullying myself, just encouraging myself. This has produced a softening and has helped with stiffening. I have a tendancy to push myself way beyond my limits so try to listen, even ask myself what I want to do and see how it feels. I have been reading with interest about Terry Wahls and her recovery. Consequently, I have increased my vegetable content even more. My exercise routine includes Qigong, vibration therapy, swimming, exercise bike and better stretching. I also try and meditate regularly although this has been difficult to integrate. I read Pema Chodron for inspiration. Some days are better than others. I feel grateful I have a job as a nurse that is mostly seated. I live in Montreal on the 3rd floor and have no intention of moving. This is home.
So, outside I use both hiking poles and have noticed a few times a week I can walk in to work just carrying them. I plan to take the bus at least once a week as a return to function (at the moment I take taxis and get rides from my wonderful husband). Two weeks ago, I drove to the pool, had a short swim, shopped for groceries (had them delivered), walked back to the car and was very happy to get home!
I was diagnosed just over 2 years ago but all started close to 11 years ago. Last autumn, I fell apart for many reasons and my MS took a hit. I realize that for 6 months prior to this I wasn't listening to my body. It was screaming at me and so finally had to shut down. Recovery is a long road but as I keep saying we all have something and there are a few times I feel lucky it's only this and not something worse.
Good luck to all.
Teena Marie
Hi Carol.
Thanks for your post, it made me realise i`m feeling exactly the same as yourself. Sometimes it goes really quiet on here does`nt it? I visit every day but mainly answer other peoples questions without asking my own!!
I`m about 8 months in and must admit i`ve been struggling with keeping motivated since christmas. I caved in and ate a few no no`s and since then have found it really difficult to get back on track.
Lets hope someone reads these posts and gives us the boost we need-hang on in there!!!
Regards Sarah.
Good news report!!! Hello
Good news report!!!
Hello all! It's been awhile but I wanted to pass on an update to you. My Mom, who also has MS (diagnosed about 15 years ago), started the diet about six weeks before I did (January of this year). She has been plagued with painful peripheral neuropathy in her feet for the past few years and was on Cymbalta, Lyrica and topical pain patches. She stopped taking Cymbalta and using the pain patches - hasn't needed them for a week. Next step is to talk to her neuro about weaning off of the Lyrica.
Hooray for the MS Recovery Diet! The progress is slow and steady - and Lord knows it's teaching me to dig deep and find some reserve of patience I didn't know I had.
Keep it up! And let's hear more stories!
Susie
Patty Gruber - Yes, I'm
Patty Gruber - Yes, I'm trying soil based probiotics. My trainer tells me they have more antioxidants and amino acids so they're very good. They're better because the soil foods of today are grown in are depleted of these probiotics so you don't get them from the food we eat.
Retta, You may want to
Retta,
You may want to contact Ann and Judi to see if there is anything you can do to tweak the diet. I just did, and although I thought I was doing a good job of following the diet, Ann had a few suggestions to guide me in making some necessary changes. Namely, I was eating too much fruit and starch. Ann responded to my emails very quickly and is truly helpful. Good luck!
Hi folks. I appreciate all
Hi folks. I appreciate all the positive comments. I too get discouraged from time to time. I started the diet in March of 08. That is 14 months ago.
I was diagnosed 18 years ago. It's been a slow progression for me. Only in the last five years have I needed a cane. I can walk short distances. Like a block. But slowly and carefully. Stairs are very difficult.
I'm not sure if I notice any improvement. Some days I think well maybe it is a little easier. But then other days I'm sure nothing has improved.
My dream is to be able to go on brisk walks again.
I have been religious about the diet and don't cheat. I use an exercise machine at the gym 3 times a week and yoga as well.
I just wonder if I'm doing something wrong. But I don't know what?
Please keep the positive stories coming. I need to hear them!
Thanks,
~Retta in Kansas
Patty Gruber I was told to
Patty Gruber
I was told to order soil based pro-biotics by my trainer. I'll have more information when I receive them in the mail. They're coming from England so it should take a few more days.
hi patty , ive been on the
hi patty , ive been on the recovery for about 1 year now , i have to admit it may be a drasyic change of diet but i know its making a difference in my body , it will take quite awhile to adjust to this change but i find it best to think of it as a lifestyle change , just like when we got diagnosed , now thw hard work starts , it gets better after a while . as your tastebuds calm down enjoy the flavors of the food in its natural unrefined state , remember this , refinement of our food is what caused our trouble , unrefined food will help you , refined food will harm
take care and good luck
ken
What kind of probiotics did
What kind of probiotics did you order?... soil based?, or is that a typo? I am trying to get started on the diet too, and it is challenging.
Patty Gruber I've been on
Patty Gruber
I've been on the diet since 2/14/09. I'm really not seeing any change yet and I'm trying not to get discouraged. I was diagnosed 11 years ago and I know I won't be better quickly. I'm still sticking closely to the diet and continuing to work with my 2 personal trainers and my physical therapist. I have a lot of people cheering me on and praying for me. I ordered some soil based pro-biotics to try and fix my digestive system. I'm hoping doing that will jump start my recovery. If anyone has any other ideas, I'd love to hear them. I'll just keep on plugging away because I believe this is the way for me to go to be healed.
Hi Susie I eat fruit and
Hi Susie
I eat fruit and drink tea everyday, I don't know if that is a good thing or not. I do not limit my number of of grains but I only have about 2 or 3 servings anyway. I have eliminated glutens, legumes, dairy, eggs, and yeast;however there may be trace amounts of yeast and soya in some foods I eat. I limit my sugar and fat intake, I never add sugar to anything. I prepare all of my own food so if I need a fat for cooking,I use olive oil. I eat alot of vegetables, and i like to snack on nuts, and dried fruit. When I do drink coffee I drink regular.
Do you think that drinking decaf helps your recovery or does it allow you to sleep better?
Resting of course, is very important to recovery but cafine doesn't keep me from getting my rest.
Cheers
lazer
Yes - I do have fruit,
Yes - I do have fruit, occasionally - like yesterday I made a smoothie with blackberries. But every once in awhile, in small amounts, I seem to handle it ok. I'm not exceeding the recommended amount of fat but I do limit grains (no more than 1 or 2 servings a day). And I am caffeine free now, except a once weekly treat - a mug of decaf coffee on Sunday.
How 'bout you?
Hey Susie I just love the
Hey Susie
I just love the picture of you! It's fantastic that you have already improved. You look so happy and positive! Are you on the strict diet where you do not eat fruits and limit oil amounts and coffee?
Keep up the good work!
Lazer
DONT GIVE UP , keep
DONT GIVE UP , keep imagining yourself on tht bike , remeber that the damage your body is trying to deal with is great and it will take all of your patience to cope , be patient , you will win but it takes time.
stay strong and be brave
ken
Jearod - if you're asking
Jearod - if you're asking me, I am happy to share...
Background: I am 31 and I was diagnosed October 2001 (after a bout of double vision that started three days before my wedding and one year of visiting a couple of neurologists). MS kicked my ass pretty steadily - 3 to 4 relapses a year requiring steroid treatments. I started on Avonex then switched to Rebif, Copaxone and Betaseron. 3 years ago this August I started Novantrone in addition to Betaseron. Novantrone is an awful drug; basically poison BUT I've been in remission since I started it, so I don't feel like I can complain too much. And who knows where I'd be now without it. I reach my dose limit in about a year but I know it won't matter because I'll be well on my way to recovery...
Alternative therapy-wise I tried the Swank diet, albeit half-heartedly, about 5 years ago (I'm Italian; I love to eat - I was a sugar hound - if you gave me swedish fish or a caramel sundae I was a happy girl). I've also tried LDN and Manuka honey with bee venom in it. After those experiences left me with nothing, I started to believe that if "it's too good to be true, it usually is".
In the first year after my diagnosis I (very) quickly needed a cane and I started using a wheeled walker in 2005 after a bad fall. My upper body is very strong and the lower half, not so much. I walk like a wobbly toddler when I don't have my walker to lean on to. I now have a scooter for trips outside of the house and hand controls on my car 'cause I don't trust my feet quite yet. I've made countless concessions, adjustments and revisions to my life because of this disease. So, when my mom (who also has MS) brought the book to me I thought, "I'm willing to put all of these drugs in my body, but not change my diet?!" Seemed like a no-brainer.
God bless Ann and Judi - they have been so available to me; answering all of my neurotic questions, even taking a look at my food diary. Before I decided to start this, I sent them a long ol' email full of questions and skepticism. That was before I even had my copy of the book!
I decided to take a strict approach because I'm so compromised - on Judi's recommendation. Lean protein, veggies, one MAYBE two servings of some kind of grain (oatmeal for breakfast, pizza with millet flax crust, etc). I use stevia to sweeten my oatmeal - one packet, tops. And no fruit. There were some times I had fruit because I was traveling and there was nothing else I could eat or it was a special occasion (i.e. on Easter Sunday I splurged and had 5 blackberries... yum!) But I do notice that sugar is a trigger for me. Also, I can't have a lot of corn in one day or that affects me too.
The results: two weeks in, my legs and feet which were up until now pretty much numb started to buzz and tingle - kinda like how your limbs feel when they start to wake up after being asleep. THAT HAS NOT STOPPED SINCE - and I'm about to start my 12th week of the diet. Also, I had my husband do a "safety pin test" on my feet that they did in physical therapy last summer - basically, you close your eyes and they (gently) prick your feet with a safety pin and you have to describe to them what part of your foot they're touching. Last summer I told the therapist, "I have no idea where you are, you could be pricking the mat I'm laying on." When my husband tried -I FELT EVERY SINGLE PRICK and could describe where he was on each foot in detail. So, something is happening! It's enough subtle, incremental changes to keep me moving forward.
In addition to my dietary changes, I've also started exercising 3 to 5 days a week. Supplement-wise I'm taking probiotics, vitamin D, calcium and magnesium, and I use flax seed oil in my salad dressing - in addition to my prescription meds. I do have a glass of wine or gluten free beer on occasion and I am caffeine free, except on Sundays when I splurge and enjoy one cup of decaf coffee.
They say it takes 30 days to form a habit and I am totally committed to this - it's a lifestyle change. I feel good, I have more energy, I sleep better and I've lost 13 lbs without even trying! So, there you have it!
Stick to it, it's so worth it! If you ever have any questions and you want to contact me directly, you can reach me at: susieu@gmail.com.
Susie, I just looked at the
Susie,
I just looked at the photo. Absolutely amazing. It literally brought tears to my eyes. I think you look like a million bucks. Keep us posted and keep doing all you're doing.
All the best from Montreal,
Teena Marie
Thanks! When I first
Thanks! When I first started the diet, I had my husband film me walking down the hallway to document my progress, too. I did another film a few weeks after that and I plan to do one shortly. Eventually I'm going to post them on YouTube so everyone can see!
Wow!!! Well done you suzie,
Wow!!! Well done you suzie, and how lovely to put a face to a name-keep up the good work!!!!
kind regards Sarah.
Congratulations Susie! Keep
Congratulations Susie!
Keep up the good job!
To encourage us newbies....
To encourage us newbies.... tell us about your journey. I need encouragement and advice.
Proof! Here's a picutre of
Proof!
Here's a picutre of me from Saturday: standing without holding on to anything! (I know I look kinda goofy, I'm just really excited)
http://farm4.static.flickr.com/3587/3458643949_5b8885e7a0_o.jpg
11 weeks in and I can't wait to see all the other good things that will happen. Thank you, Ann and Judi, for sharing your success with everyone!
Susie
i started last june , it was
i started last june , it was hard at first but then you play little games with your self like lets give it a month and see what happens and pretty soon its 2 months and you start to notice small changes , no one else sees them but you are starting to feel it ,i am finally sleeping more than 3 hrs at a strech ,when i started i was lucky if i could sleep for an hour . as well my enerjgy level is increased dramatically , i no longer feel the overwhelming desire to sleep all the time . and my back isnt burning all the time .
keep it up and you will slowly improve
ken
Please post more updates! I
Please post more updates! I need encouragement - I understand that it's going to take some time to undo the damage that MS has wreaked on my body for the past 8 years. But I am not a patient person by nature and I'm struggling with that. The diet is going great, and on a side note I've lost 13 lbs! I keep telling myself "when I'm recovered I'm going to buy a Schwinn Cruiser so I can ride around my neighborhood in style" so here's to hoping!
hi everyone , i have been
hi everyone , i have been doing the diet faithfully since june 25/08 , i feel that progress is not so noticeable at first but ive felt an increase in my energy levels , i was diagnosed in 05 with ppms , i floundered asbout for the 1st 3 years then i started this diet and it is slowly changing , i recomend using a good liquid vit d like d drops as it is highly absorpable, keep reinventing your diet and just hang in there i feel the 1st year is the hardest as we are re learning a lot of bad dietary habits that have led us to where we are now .
take care
ken
Hi all, I want to report
Hi all,
I want to report about my progress.
I have had MS for 16 years now, fortunately of a mild type (three exacerbations within the first 12 years, mild and self-curing). I started feeling some permanent problems 4 years ago (fatigue, a slight loss of balance when going down the stairs, a weak right side when walking, occasional stiffness of legs, a late right leg when changing direction). It was then that I decided to do something about my ailment, because before that I was in denial (not wise of me, I know!).
I have always been on the healthy side of nutrition and on the alternative side of medicine. I never used any traditional drugs. I tried homeopathy and regular exercise of several types. Two years ago I went on the BBD and started taking most of the supplements recommended by Ashton Embry. Fatigue improved greatly. One and a half year ago I went on LDN and felt no difference. I stayed on 3 mg/night for more than one year because on 4.5 mg I had some side effects. I am underweight and thought that this might have to do.
Last December I read the MS recovery book and was tested for food allergies. I excluded from my diet all foods I am intolerant to and added fresh vegetable juices and ground flaxseeds to my daily routine. Together with the nutritional approach, I started yoga exercise. During the first two months on this regimen, my health condition had many ups and downs but by the third month I felt a great improvement. Fatigue, loss of balance and stiffness have gradually disappeared and very rarely do I feel a difference between my two legs. Sticking with the diet is not difficult for me, since I am the opposite of a greedy person. The social part is more difficult, since people don't see why a thin person like me should be on a strict diet, but I don't mind.
As I was feeling better, I tried a mild colon detox (with herbal teas) and felt even better. This encourages me to go on a liver detox with herbs. I plan to do it next week. I have to notice that last January I was able to raise my dose of LDN to 4.5 mg without side effects and I suppose that my new diet has to do. Besides, I was able to cut down on my supplements according to my holistic doctor's advice.
I am thankful to the dietary approach to MS and hope I will keep up the good job and the good health. I encourage everybody to be patient and stick with the diet. Every organism works on its own pace and needs its time and encouragement.
I hope this helps and wish the best for everybody's health.
ippokabos
I started the diet on
I started the diet on Valentine's Day. My husband has dinner with me each night and really enjoys what I've prepared. I'm experimenting with new recipes all the time and so far they're all winners. As long as they have lots of flavor it doesn't matter that it's a diet.
The only improvement I've seen so far is to my bladder. I can go for longer periods without any accidents. My walking is not getting any better yet and my stamina is still very bad. I'm making sure I keep positive people around me. I have 2 personal trainers and a physical therapist who all cheer me on and keep me moving. Can't wait for the day when I can throw away my cane.
Patty Gruber
Can i just give a huge
Can i just give a huge thank you to everyone who has responded to this post, and thank you Lazer it has just given me a huge boost to know that everyone is so supportive, and even better to hear that many of you are improving!!
I have been angry with myself for giving in to a few temptations, but glad because it highlights how easy the old symptoms can creep up on you again. I have`nt given in totally, but a recent stressful period knocked me off balance, but i feel more determined than ever to get back on track, a healthy diet is a much better option than a wheelchair.
Thanks again everyone for the much needed support!!
Regards Sarah.
I've experienced insomnia
I've experienced insomnia for years...waking up at 1:34 a.m., 2:30 a.m., 3:30 a.m. and not being able to fall back to sleep without terrible nightmares. However, the Good News is...since starting this diet, three weeks ago, I am sleeping all night until 5 a.m. Obviously something that I've eliminated in my diet, and I've eliminated all the foods required, was interfering with my sleep patterns.
I'm 64 and was diagnosed in November with MS. I'm 5'6" tall (on a good day!), 143 lbs. (I've lost about 5 lbs on the diet) and working full time as a secretary. I found the elimination diet fairly easy since I did go on a similar diet when I was in my mid 50's and having a "hell of a time" with menopause! Worst time of my life! I'm now feeling better and hopeful.
Thank you, Ann and Judith!
Nicole S. I started last
Nicole S.
I started last April, partially, went full on by July. My head and neck pain are much better, headaches less frequent, less severe. The movement in my left hand is stronger and less spastic. Any numbness I had (ribs and, occasionally, in feet) is completely gone. Last month, for the first time, I was able to soften my left knee (couldn't before because of spasticity) while exercising and have been able to do so since. In fact, my exercise routine has gotten much stronger. My energy is better. My balance is better and I don't fall as much. I never had big issue with bladder control, but that seems better, too...less urgency. My walk is still bad, use trekking poles, but my physical therapist thinks a lot of that is bad habit resulting from repeated sprains on my "good" side. Sometimes, I get really discouraged that walk is still bad, stairs still so hard. I'm still waiting to be able to use alternate feet on stairs, rather than leading with good foot. Can do it sometimes, not often. I last week started to test eggs in my diet, and I don't seem to have trouble with once a week usage. Found brown-skinned potatoes and bananas bad, red-skinned ok. Am very strict on diet. Discovered the grain quinoa, nice change from rice, and found a French dark chocolate at Whole Foods w/ no soy lecithin. Too much refined sugar causes headaches, but occasional sorbet is ok.
Hi everybody: 2009 is the
Hi everybody: 2009 is the year of healing for all of us, you too Sarah! do not give up! I gradually removed the possible trigger foods from my diet over a period of two months. To me it is an opportunity to try new foods and eat things i just didn't before. I love food and I am dedicated to this diet and what ever can improve my general health. I've done a lot of my own research, as well as the information in the book, to make sure I get ll the proper nutriants in my diet.
The one big improvement for me is not being constipated all the time that alone improves my quality of life. I do have more energy. I usually have to stop any task after about 20 minits but today , i was cooking for over 2 hours! Thats really good for me!
We got to encourage each other
don't look back
just give it your best!
lazer
I was diagnosed with RRMS on
I was diagnosed with RRMS on 29th of Dec 2008 following optic neuritis, numbness throughtout 80% of my body at its worse, and extremely uncomfortable hot and cold patches.
I had known myself that it was MS from the beginning of Oct , I developed the fault in my eyesight (with the wonderful stabbing pain!)and the soles of me feet went numb, and I looked up the symptoms on the web. My choices were MS or a tumour- it was odd to actually hope for a chronic disease I can tell you!
I spent October and November worrying and crying mostly, then in December I decided to take action. About a week of research lead me to this diet. I didn't actually read the book until January as I knew that I would have to cut out a lot of my yummies and I was looking forward to Christmas! lol
I went for it 100%, cut everything out, no cheating. Within 3 weeks the numbness (which was previously covering about 50% of my body) went down to being on my palms and soles of my feet. The optic neuritis, which had been improving (but very slowly) suddenly jumped until I only noticed a difference in my eyes when I was tired. But I think the best thing was my energy levels, until that point I was sleeping about 10 hrs per night and having to take a 1-2 hr nap in the afternoon. Now 2 months down the line I have a nice 7-8 hour sleep at night with no naps at all! I actually feel back to being 26 instead of 86!
A lot of people (MS nurse, neurologist, MS Society forums) keep telling me RRMS is supposed to come and go and its unlikely the diet is doing anything. My response is- I know its works because I did push my luck once. Having been told caffeine was a nono I thought I'd be a smart a** and have decaff- having gone a month without I must have had about 8 cups in 2 days! The next day I woke up and noticed a weakness in my left leg, I could lift it but could only hold it up for about 5 seconds. Having never had a weakness symptom before I almost fell apart. But instead I analysed what I had been consuming and the only wildcard I could find was the coffee. I immediatly cut it out- within 9 days the weakness was completey gone.
After having 5 months off work I went back to work part time on the 12th of January (I work for a call centre), every week since then Ive upped the amount of time Im there each week, first by 15 mins then by 30. In about 5 weeks Ill be back up to full time, and I honestly cant wait. After all that complaining I used to do about work I now am grateful for everyday that I can get through with a smile on my face.
I plan to stay completely strict for a year- absolutly no cheating. Once that year is up Ill start systematically trying a known 'trigger' food to see if it affects me. I plan on getting a scratch allergy test to help me narrow it down.
Ive recommended this diet to few people and I was completely honest. Yes it can be a pain, no you cant have that, or that, or that, and definitely not that! But if you can get the results- who cares if you have to read the label before you buy it?
I know its hard, believe me as a self confessed chocoholic it is extremely hard. I get through it with visualisation- I picture myself eating a big box of beautiful milk chocolates, can feel its sweetness on my tongue and sliding down my throat. I can see the ecstacy on my face...but then I pull the camera back and Im enjoying that lovely box of choccies sitting in a wheelchair. Suddenly all my previously favourite foods dont seem quite so appealing!
Im currently training to do the Cancer Research Race For Life which is, for those unaware, a 5k walk/run. I do plan on walking it, even before MS I was never what you'd call fit! But it makes me feel good to help others regardless of this stupid inconvenient disease.
I think the most fantastic thing about this diet is that I feel like Ive regained the control of my life that I felt MS had taken from me. And being a rather particular control freak that means everything to me!
I do hope that everyone has the same results that Ive had and hope to continue. And if you know anyone else with MS please recommend it, what have they got to lose? Except perhaps, a wheelchair.
Ceri (TheWillow)
x
Way to go, Ken! In less
Way to go, Ken! In less than a year. Congratulations.
I use a lot of messaging to get things reconnected. Sometimes (for instance-lifting my left leg) I send the message I'm lifting it 3 times and then the 4th actually lift it.
I walked part of the way home after a swim. Finally getting a little milder here in Montreal.
Teena Marie
hi everyone , ive been doing
hi everyone , ive been doing the diet since june 08 and i am now finally feeling a specific change , this morning i actually was walking around my place and standing at the counter doing some cleaning , i really feel good about this and i know its working but you must stay true to the diet it is key to healing ,i have primary progressive ms and was sliding down the slippery slope to hell when i started this .
BE STRONG AND STICK WITH THE DIET, you will improve.
ken birzneck
Ok, I've been at this for
Ok, I've been at this for four weeks now - and the first 3 weeks I notice exciting improvements in sensation (my feet and legs). And starting last week I noticed that I was going to the bathroom less b/c (TMI warning) I was peeing more, volume-wise. BUT - that also appears to have its down side b/c I've actually had a couple of night time accidents. This past Saturday, I noticed my legs felt weaker and that feeling has stayed - I fell yesterday; my legs just gave out so now I'm nursing a sore leg. I'm exercising 3x/week - I have a pedal exerciser like the ones in Physical Therapy clinics. I do 15 min on my legs (have to kind of push them to move, but it's better than nothing) and then put the exerciser on the table and do 15 on my arms - so I'm getting a full 30 minutes of cardio. And to boot, I've lost 9 pounds!
I think I'm going to start using some of the exercises in the book. The diet is going great - 4 women I met at a NMSS social gathering that are all in their early 30s like me came over Saturday and we had a potluck - all MS Recovery Diet foods. All of the food was delicious! I have eliminated all sugar except for what's in rice and veggies but I keep finding soy lecithin in ingredients (Almond Breeze almond milk for example) so I guess my in-store label scouring isn't as thorough as I thought it was. But Almond Dream (same company that makes Rice Dream) doesn't have soy lecithin in it so I plan to buy some in the next couple of days. And make sure you get *unsweetened*.
2 things I miss the most? Coffee and ice cream. But I'll suck it up. The pros outweigh the cons! My mom is doing the diet too (she has had MS for over 20 years) so I have a partner in crime. My dad is doing it with her, but my husband is not doing it with me - which hasn't been a problem at all, maybe b/c it's just the two of us.
Sorry for the long post, but I thought I'd give a full report!
hi carol , i know the road
hi carol , i know the road seems long but it is doable , i have been on the recovery since june and i feel now that i am fnally feeling small improvements , i still use a wheelchair but the fatigue and spasms have lessened ,just remeber those trigger foods have to be avoided at all costs , watch out for lecthin its made fron soy and that stuff is bad for msers , follow the advice carefully just stay with it ,. i make fod for my sons and they make such faces when they see what i eat , i am doing this so i can stay strong for them . get some hemp hearts and mix them in your food in the morning, i also drink fresh carrot juice ,
hang in there
ken
Hello all, It's a tough go.
Hello all,
It's a tough go. My recovery feels like it's moving at a snail's pace. Sometimes, I get in touch with trying too hard and try and get into the now of the situation. One thing that has really helped me most recently is talking to my body. I actually say things like "here, let me help you" and try to think of not bullying myself, just encouraging myself. This has produced a softening and has helped with stiffening. I have a tendancy to push myself way beyond my limits so try to listen, even ask myself what I want to do and see how it feels. I have been reading with interest about Terry Wahls and her recovery. Consequently, I have increased my vegetable content even more. My exercise routine includes Qigong, vibration therapy, swimming, exercise bike and better stretching. I also try and meditate regularly although this has been difficult to integrate. I read Pema Chodron for inspiration. Some days are better than others. I feel grateful I have a job as a nurse that is mostly seated. I live in Montreal on the 3rd floor and have no intention of moving. This is home.
So, outside I use both hiking poles and have noticed a few times a week I can walk in to work just carrying them. I plan to take the bus at least once a week as a return to function (at the moment I take taxis and get rides from my wonderful husband). Two weeks ago, I drove to the pool, had a short swim, shopped for groceries (had them delivered), walked back to the car and was very happy to get home!
I was diagnosed just over 2 years ago but all started close to 11 years ago. Last autumn, I fell apart for many reasons and my MS took a hit. I realize that for 6 months prior to this I wasn't listening to my body. It was screaming at me and so finally had to shut down. Recovery is a long road but as I keep saying we all have something and there are a few times I feel lucky it's only this and not something worse.
Good luck to all.
Teena Marie
Hi Carol. Thanks for your
Hi Carol.
Thanks for your post, it made me realise i`m feeling exactly the same as yourself. Sometimes it goes really quiet on here does`nt it? I visit every day but mainly answer other peoples questions without asking my own!!
I`m about 8 months in and must admit i`ve been struggling with keeping motivated since christmas. I caved in and ate a few no no`s and since then have found it really difficult to get back on track.
Lets hope someone reads these posts and gives us the boost we need-hang on in there!!!
Regards Sarah.