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Can Diet and Vitamins Improve Myasthenia Gravis Symptoms
Myasthenia Gravis and Celiac Disease…Are they sisters/brothers in the Autoimmune Family? Can diet and vitamins improve or eliminate symptoms? I think the answer is yes.
I come from a family with an Aunt that has Lupus and Reynaud’s, 2 brothers with Type 1 Diabetes, I have MG and Celiac, Husband Celiac, all 3 children Celiac and one of my Daughters also got Graves Disease right as we caught the Celiac Disease. We saved her thyroid by diet, vitamins and on meds for one year. She is totally cured from Graves. I am not an expert on anything, I just read and draw my own conclusions which may or may not be correct. I started reading about blood related problems back in 1991 when I was dx with Leukopenia which is low white blood counts and then Thrombocytopenia which is low platelet counts. Then graduated to Fibromyalgia and then Axonal Neuropathy and then B12 and vitamins and then Myasthenia Gravis and then Celiac Disease and then Holistic Alternatives. I think reading about how to get healthy is the most important thing you can do. I once read a Holistic Cancer doctor who said it is more important to read about ways to improve your health for 30 minutes a day rather to read about diseases. Of course first you have to figure out what is wrong with you…but if you keep to the idea of, “I know something is wrong but How Can I Fix this”…rather than please give me a pill to make this all go away (and the pill way is what I really wanted in the beginning until I had reactions and realized my body could not handle drugs)…well, you may just be able to fix a lot of things that are happening to you. Here are the people I read online They are all interesting with exciting ideas to read 1. Started with Rose and MrsD, and DogtorJ on BrainTalk and Neurotalk 2. JCC/Cara and Annie over at GlutenFree and Beyond 3. Dr. Mercola he sells things too but he has been very helpful to me and very eye opening to mercury fillings, GMO, hormones, raw milk, vitamins and more 4. Mike Adams Natural News…he may be a little over the edge for some but he really keeps me up on all the latest vaccine, food vitamins, and holistic cancer treatments which I read because if I am ever in that situation…I want to know my options now and not be frightened into doing something I don’t want to 5. Dr. Carolyn Dean the Magnisium Holistic doctor 6. Dr. Cannell Vitamin D newsletter 7. Dr. Mark Hyman and Dr. Rodney Ford talk a lot about Gluten Sensitivity and how almost everyone should be Gluten Free…not just Celiacs. 8. Dr. Oz on TV…he is not perfect but he is making people rethink what you eat and drink, and is helping you find alternatives to drugs by using herbs and vitamins I think also…you have to realize that…I was not born this way so what suddenly caused my body to attack itself. Am I causing this? If so what can I do? So in order to fix your body, you have to understand what is going on. More than likely most people with autoimmune diseases probably have a leaky gut. What is a leaky gut? Leaky gut syndrome is a condition where the small intestine allows food protein to enter the blood stream. Autism, allergies, inflammatory bowel and autoimmune conditions can be linked to this problem. So, in other words, say you are eating a nice piece of whole grain bread and feel just fine…but in your small intestine…there is a war, it is saying …Wow this gluten is too much for me to handle and the toxic protein starts banging against the Villi (small fingerlike lining) inside of the small intestine. Soon you have little holes that let the bad toxins in your small intestine OUT into your bloodstream. The bad toxins never make it to the large intestine to be disposed of. So, now we have toxic foreign proteins that are looking for homes. Some go to joints and you get Rheumatoid Arthritis…some go to muscles and nerve receptors and you get Myasthenia Gravis….some go to Pancreas…some go to the skin….some go to the Brain…and on and on…..and the next thing you know you are creating antibodies to fight all these toxic proteins But why is our food suddenly damaging us…well, our gluten is not what our ancestors ate. Around 50-60 years ago there was 5% gluten in our food…now it is 50%. Our bodies were not meant to eat this type of gluten whether you have Celiac Disease or not. And along with gluten we are getting the GMO (Genetically Modified Foods) that contain pesticides….. meat that contains who knows what…and we spray our lawns….spray our fruits…drink synthetic sugars….eat foods full of sugar and high fructose corn syrup. Sugar causes inflammation. Gluten causes inflammation. Dairy causes inflammation. If you just cut out gluten, dairy and Sugar you might be amazed at the results. So now you kind of know what might be causing your problems. Now you have to change your thinking…which is very hard especially for the undiagnosed….I know because I thought the same way…I wanted a diagnosis…I needed a diagnosis…so people wouldn’t think I was crazy….I wanted a quick fix too Then you have to say to yourself while trying to get a diagnosis…OK…I really don’t want to live this way anymore so I have to do things to get better…just say you have MG…who cares if the doctor thinks you do…you know your are sick and you know you are not crazy and you know you don’t need psych meds.. Now realize I am not against taking drugs as my daughter needed the help with Graves and my mother needs something to help get her to the point of healing herself and I think the right drug could be helpful. But remember the drugs do not cure the disease they only lessen or stop the symptoms only to have them return. So, once you get stable then I feel it is time to evaluate your health…eating habits…sleeping habits and try to modify them so that you might be able to get drug free and stay drug free and get back to health or semi health. Sleep is probably the 1st that needs fixed but without changing your diet it may be hard to do. A solid few hours of sleep fixes so many things. How many stay up late to read etc on computer and then wake up too early…feel totally exhausted by 9am…or have to struggle to get out of bed at 7 or 8 am. This shouldn’t be happening. You need to get to bed by 9 or 10 read a little and sleep most of the night and wake up at 6 and be able to get out of bed and look forward to the day. I am finally at this point and it is wonderful and I think it is possible for many of you to get to this point too. Now, here is what I did to get better…I am not 100% but I am wayyyy better…and it took a few years…it was not overnight….but it could have been faster if I had stopped all processed gluten free food …I didn’t eat a lot but still it was enough to slow down the healing. 1.I should have done what holistic cancer patients do and eat totally raw or at least all veggie, fruit, nuts and some meats and fish. 2.Instead I went to Celiac meetings eating all the GF food and always feeling worse after. Before going gluten free, I ate healthy but loved pasta. I was addicted to pasta. So I substituted Rice pasta and it was not bad at all but it kept me passing out from a major drop in insulin levels after I would eat it. So, Rice and Rice Pastas where not helping regulate my insulin (I do not have diabetes of any kind) My antibodies to gluten continued to be positive for 7 years even though I was very strict about no gluten in the house but no matter how careful you are Restaurants just didn’t understand even if they said they did. Now 8 years later restaurants and manufacturers are trying and are better…. but still GF processed food is probably worse than regular processed food because of the extra sugars etc. so that is why you should not do as my mom who tried going GF and bought all the cakes, cookies and anything that said GF…she did try the diet a year or so ago and I know would then go out to eat and eat the real bread then she said her BP got worse…hmmm and diet wasn’t good…well that was because she really wasn’t gluten free. 3.For the first few years I got better but not anything dramatic because I had a lot of healing to do and was not doing it properly. I also had a lot of damage in my brain..muscles…eyes. Also I was very stupid to let them give my a dpt shot when I cut my knee open with a rusty nail. This put me back 2years because my body had to fight the toxicity off. If you can help it never get any type of vaccine or flu shot. The flu shots still contain mercury…you don’t need any more brain fog and that is what it did to me…suddenly I am putting the peanut butter in the fridge. So to change I had to change my brain…I eat to Live……Do not live to eat..living to eat may make you feel better emotionally but in the long run you pay for it. Ask your doctor to check all your vitamin levels, hormone levels, and anything else you can think of so you know where to start. If not just start with basics and add things and see if they help. What I take daily and may not be right for you but gives you ideas. B12 Methylcobalamin 5,000 sublingual ..Used to take daily now maybe 3-4x a week Folic acid 1 x day B 50 complex everyday Krill oil everyday (Dr. Mercola’s brand) D3 with C, K, Magnesium and zinc (Revolution-D from SAN) 5,000 IU a day (used to take Carlson 10,000 5x a week) Probiotics…very necessary for any one with autoimmune problems. Right now I am taking Dr. Mercola’s but others are good from store. Yogurt is not good enough. Chlorella about 5 pills a day to help remove toxins like mercury, pesticides etc Recently added Turmeric to fight cancer cells 1 x day Ubiquinol/CoQ10 important for immune system and cardiovascular Epsom Salt bath 1-2 cups in water every night helps with sleep and gives me magnesium Chamomile tea with 1 teaspoon organic tart cherry juice concentrate every night helps with sleep What I eat now and it may not be right for anybody…but might give you some ideas. PS..my husbands cholesterol when down on this diet. Breakfast ¼ cup organic roasted cashews (these are very expensive but filling) 3 Medjool Dates ½ cup of coffee Early lunch Either leftovers or Smoothie made with 1-2 banana or 1 avocado, 2 handfuls of Kale, organic fruit if possible I use a little of these (frozen strawberries, blueberries, mangoes, and red raspberries) I throw in some flax, ground raw almonds and chia seeds. Add ½ lemon juice (good for liver) and 1 small bottle of coconut water or regular water or almond milk. If you have a good blender the kale will not be found…LOL..I have a Cusinart Powerblend 600 that was not expensive and grinds everything to a smoothie. Dinner Snack my only bad stuff 3 to 6 oz red wine Homemade humus or salsa or guacamole or cashews Dinner try to stay away from casseroles and keep it simple. 1. Always start with the biggest salad you can eat as it fills you up and is good for you if you do it right Big salad made with dark green lettuce and in summer made with home grown kale..add lots of ground carrots, ground raw almonds or ground walnuts, and other fresh veggies and sometimes fruit like organic strawberries…I recently changed to organic as strawberries have the worst pesticides as do apples. 2. Next I always steam 2 batches Broccoli or 1 Cauliflower. My husband uses hot sauce and I like it with olive oil and sea salt After eating these 2 things you don’t need a lot of other things but some ideas 3. We have friends that breed beefalo so we do some of that meat along with wild cod and wild salmon add a sweet potato or winter squash and you are good to go 4. My husband likes his carbs but last week I made the pasta and I didn’t pass out but did wake up jittery and couldn’t sleep. So we try to eat more quinoa which doesn’t cause the reaction. My chamomile tea with tart cherry concentrate 1 hour before bed Epsom salt bath Good Night Hope this helps someone…and apologize for length. What have I fixed: This mostly happened last year Sometimes I have a bad day or 2 but mostly I am great.
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Hello Llonghair....
I would imagine diet and vitamins improve myasthenia gravis symptoms - if its not Myasthenia Gravis. I would also imagine it is difficult to predict those specific effects on an already fluctuating disease. I had M.E many years ago and whey protein worked wonders for that. But a few years later only during a Mestinon trial with Mestinon taken on symptomatic basis was there an effect on the newer more stubborn myasthenic symptoms which were to last quite a number of years. I went through my worst years without any medication and during that time desperately toyed with a number of dietary interventions which unfortunately had no effect whatsoever. I also had interesting experiences with observing change in the roles of sleep, rest and exercise over the years. And because of the extreme slow progression of mysthenic weakness followed by similarly progressive remission, my opinion is that myasthenia gravis symptoms have a life of their own. Depending on severity, diet and vitamins may play an assisting role - but will do very little to get you out of an exacerbation. I also do think that the overall course of the disease, can only be altered by 3 things: thyectomy (not all), spontaneous remissions, and drugs, if appropriate to your specific MG profile. What a fantastic story about your own research and your own journey to health. Your research and dedication to finding your way to better health is inspiring. And I agree there MUST be some way out! Good luck with your continued success in the future :) Anacrusis |
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I am also experimenting with juicing and I was amazed by how good I felt when I did it for a week. (If you haven't seen "Fat, Sick and Nearly Dead" I highly recommend it! It inspired me to try juicing.) I am going to do it more often and for longer periods. It produced phenomenal results, at least in the short term. Like you, I want to think about health instead of "being sick." Another movie that inspired me is "The Secret." It's over-hyped and sensationalized but the message is powerful nonetheless: Energy flows where thoughts go. If you think about sickness (even if you think about NOT BEING SICK), you are still drawing sickness to you. But if you think about health, you are more likely to drawing THAT to you. I don't sleep as much as I should but mostly it's from worrying about my MG. I read posts here that just upset and frighten me, so your post gave me hope and really thank you for that. I am going to keep believing that my body will reward me for treating it well! |
Well, you have really outdone yourself. This is a fantastic overview of what you've been doing to help yourself. Thanks.
Would you mind a suggestion or two? It's actually better to start the day with more calories than you end up with. Your breakfast is a little on the low end. There are some great quinoa cereals and other alternatives for a high fiber addition to help keep your metabolism going. And many people recommend more small snacks/meals throughout the day, such as 5 - 6. It helps keep blood sugar/insulin on a more steady regimen. Chlorella is good and helps repair DNA but to get toxins out, Zeolite is actually better. Do not try anything without talking to your primary doctor first. Cinnamon is just as good as tumeric for inflammation and does not have the blood thinning properties. Patients with any disease can be low to high "functioning" and I agree that how you take care of your body is key to that. That is my focus as well. When I don't take care of myself as well as I can due to being worn out, I feel even worse. I NEED vegetables every day. ;) Anacrusis, I have to disagree with this statement. Quote:
A case in point is a B12 deficiency. You need B12 to make choline. You need choline to make acetylcholine. The body is one big biochemical factory and you can't disconnect one aspect of health from another. Another case in point of diet impacting MG is having too much of a nightshade food at once. Or even too much caffeine. They can either make MG worse or better. No, so far there is no known way to cure MG by making health changes like more sleep, better diet and some exercise but it DOES help. It can make life with MG better. It gets harder when the immune system, like mine, has been messed up since birth and has more than MG to contend with. Llonghair, I appreciate the effort you made to put this information out there. Thank you. :hug: Annie |
Ah, I didn't read your whole post (it's waaaaay too long, how on earth did you manage that?!), but I just wanted to add my own, (weird ?) opinion.
I do not believe anything I did gave me this disease. I do not believe I can control my symptoms by diet or anything. Maybe this is the way things work if you have mild problems, if you do not have a disease (but a diagnosis based on your symptoms - which isn't always correct but how can you say?) or if you have indeed a diagnosis but which is combined with some nutritional problems. This last thing isn't so weird: for example, it is very possible to be in a poor nutritional state if you have swallowing problems. I believe this last thing is often the case. And of course things will get worse if you have a "hidden allergy" which triggers you immune system over and over again. But mine are never really that hidden, of I eat a nut, I'll be in the hospital on no time :p However, how things worked for me: I have always lived a very, very healthy life. I was very active, had enough sleep, drank herbal tea, ate all kinds of fruits and veggie's, never ever smoked, drank, ate fast food or anything. My identical twin sister is a different story: she started smoking at 12, never did any exercise and her only veggie's she got was on her pizza's. She's still working properly, I am very sick. I've been to all kinds of holistic things and whatevermore, but it never worked. Anyway, hope I don't offend anyone, or didn't understand you correctly (again, it's sooo long!). Of course there's truth in what your saying. I just want to say; I've tried, and well... I just don't think it's fair to myself to think, "did I do this to myself". |
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What we eat. What we think. What we do. Where we pray. A good attitude can help with overall health, but we didn't do this to ourselves. |
I appreciate Ravenclaw's reaction. MG is a tricky beast. It sometimes goes into remission for no apparent reason. Llonghair, you are very kind to share what has been so beneficial to you. My cautious response comes mostly from some bad experiences I've had with acquaintances who believe that every illness can be treated with nutrition (which I understand is not what you're saying). I certainly believe that bad nutrition can make an illness worse, especially if there are sensitivities and allergies involved--and that fixing the problem can therefore improve things. But I know people who believe that all diseases are caused by bad nutrition, and what follows from that premise is that if you're sick, it's your own fault. Again, I know you're not saying that.
I especially want to recommend caution when it comes to Dr. Mercola. He's the guy who published an article claiming that AIDS is caused not by the HIV virus, but by the immunosuppressant effect of the stress of being HIV positive. http://www.omsj.org/issues/can-azt-a...aids#more-4606 This is not a serious scientist whom I would trust to give me advice about how to make my immune system function properly. It took me a while to find the article, because he's removed it from his website, and replaced it with an ad for spirolina (so all links redirect there). I had a friend who brought me a container of that stuff once. She was all excited--look how much protein it has! It was indeed amazing. In fact, according to the label, there were more grams of protein in that container than there were grams of spirulina. Truly a miracle food! I don't know if Dr. Mercola's brand of spirulina overcomes the basic laws of physics in this way, but he does claim it inactivates the AIDS virus. http://articles.mercola.com/sites/ar...-heard-of.aspx I also want to recommend caution when it comes to making decisions about flu shots and other inoculations. Yes, they're risky. What needs to be kept in mind is that the infections they prevent are also risky, especially for someone with MG. There's no risk-free decision. Infections tend to trigger MG crises. For someone who already has trouble breathing, the flu is thus a triple danger. Many of us here are on immunosuppressant drugs, and so the flu is a quadruple danger to us. These dangers have to be balanced against the risks of the shot itself. One more note of caution: I also have Graves, which I put into remission by taking pills to suppress my thyroid (without changing my diet). My longest remission so far lasted five years. Anyone who has had Graves in the past should consider herself "in remission" and not "cured," so as to be on the look-out for recurrences, which are very common. Mild hyperthyroid symptoms are subtle, and might not be noticed, but can really wreak havoc with your health. Anyone who has ever had thyroid trouble should have regular blood tests. OK, done being a wet blanket! Congratulations on your improvement. I hope that you inspire me, and others here, to try some of your ideas. As for me, I have a chronic house-guest (I've given up hoping for a cure, but I would enjoy a remission) with a passion for gardening, and I'm going to make him earn his keep this summer by providing me with tons of fresh, organic vegetables. If I go gluten- and dairy-free at the same time...um...how long do I have to do it before I'm allowed to revert to my old ways? Just asking.:winky: Abby |
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Abby cracking myself up |
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additional positive thinking, diet, vitamins etc - It just happened. The story of your identical twin is fascinating and also very important. Unfortunately for you your previously healthy lifestyle did not prevent future myasthenic symptoms. Thanks always for sharing, Ravenclaw. Anacrusis :) I also cannot help but find what people have discovered about this topic interesting even though my own experience doesn´t match. To know how to somehow fine tune your health via nutrition and your own immune system sounds like quite a fine art especially if in combination with medications and the unpredictable nature of MG - Quite amazing, really! It has always been hard work for me to cut out the junk and eat with better awareness but now I might just go and get my brand new juicer out of its box in the basement where its been laying unopened for at least 6 years! And I can now even peel my own vegetables again :) |
You know, in spite of my notes of caution, I would like to try some radical improvements in my diet. This is not something I could handle alone, because, dang it, I have a disease that takes away my energy, and radical diet changes require lots and lots of energy--at least in the beginning. But I just talked to my college-age daughter, who has her own health issues, and we decided that we can manage it together, for May, June, July and August at least. If we feel remarkably better we'll be motivated, and have the energy, to keep it up.
We are already vegetarians, but we're planning to go vegan and also gluten-free. We'll eat vegetables, legumes, fruits, lots of nuts, and olive oil. Kale, right? We're supposed to eat kale. And B-12 supplements for sure (sublingual). No sugar or sugar-substitutes. Quinoa for breakfast. Anything else? No ultra-processed "veggie burger" soy junk. We're going to try to be "ingredientarians" (I made that up) which means we eat one-ingredient foods, or foods that we make from one-ingredient foods. The point of that is just a rule of thumb to get us away from over-processed stuff. This will be a grand experiment. What do you think? Is a four-month trial enough? Anything I should add, or watch out for? I don't think I can get myself to try dietary supplements besides the vitamin B-12 (and D, which I take already). I'd rather try to do it by eating the right stuff. Am I missing essential fatty acids here? Flax seed is awfully gassy, and I want to avoid fish. Abby |
Hi to all,
I almost didn’t write this post because of the concern that some people will take it the wrong way and I am sorry if you did. That was the last thing on my mind to hurt those that are already hurting. I just know that when I was at my worst…I read everyone and was grateful to all that took the time to tell me what they did to improve their health…I also didn’t agree with all but was just glad they posted and made me think…some things were very interesting and now I wish I would have followed thru on eliminating more that just the gluten faster…but it takes a lot of effort and desire to want to change what we eat, I do understand that. I guess the best example to explain what I mean about “I was not born this way, so what suddenly caused my body to attack itself? Am I causing this? If so what can I do?” is to talk about Celiac Disease. This is easy for Celiac Disease people because you were born with the DNA and activated it by eating gluten. If I did not eat gluten I would not have developed Celiac Disease. And yes, I will never be free of Celiac Disease because if I eat gluten I will be attacked. Why do some people not get Celiac with the DNA …who knows…stronger immune system maybe. But even for Celiacs, just going gluten free does not always mean healthy. When you have a delicate immune system, you have to change many habits to help make it stronger and better able to fight the foreign invaders. For me, I got better going gluten free but still had a lot of MG symptoms and fatigue in thighs and chest. The more I read about diet and immune system, the more I started understanding that food does affect it. This is stated by many, many well known doctors on the internet who are helping very sick people get their lives back. Can I stop my body from destroying my platelets and WBC? I don’t know but by gosh I am going to keep trying. Some people who go gluten free and have ITP and Celiac are immediately cured of ITP. I like so many of you still have tons of fighting to do and I am not going to stop fighting. That is why I think suddenly I can ride a bike…believe me I was not able to do this for many years. The fatigue was instant on a bike. This summer was the first time. And I think it had to do with the things below that I recently changed in the last year or so. Started taking Epsom Salt magnesium baths, which gave me a deeper sleep and started dreaming again Started drinking the chamomile tea and organic tart cherry juice concentrate Eliminated dairy (this I eliminated mostly about 4-5 years ago) Eliminated Sugar Started taking Chlorella With MG, we do know that the immune system is creating antibodies that attack the receptors. And I think the doctors know this answer too..in that the gut is releasing toxins into the bloodstream and they are attacking the receptors. And what more and more doctors suspect is that all autoimmune diseases may be very similar to Celiac Disease…something is causing the attack…and it probably is starting in the gut…..and they think it might be food, toxins, metal overloads. And yes MG also has some DNA that may be turned on by something??? Can we stop the attack…I don’t know….I do know that my major MG symptoms are better by babying my immune system. But, when I sweep the whole house and wash all the floors at once…my face droops (not my eyes) and I do get some fatigue but laying flat helps and most is gone quickly. So of course, I am not cured but oh so much better. And for my background, I was diagnosed with Myasthenia Gravis by one of the top US MG doctors and also dx by an Ophthalmologist. My symptoms were choking, difficulty swallowing, horse voice, soft voice, slurred speech, could not whistle, Double vision, blurred vision, weakness in face, eyes, neck, cheeks, chest and thigh muscles which got worse with repetition. I also had foot drop and lots of tripping and would drop things all the time. I was diagnosed with small airway disease on top of a restrictive component. These were just the MG symptoms. I also had a ton of neuro symptoms too. Also I was diagnosed with fibromyalgia, Rosacia, ITP and Leukopenia and the Rheumys always thought I had Lupus and was just waiting for it to activate. My Rosacia and Fibromyalgia are gone. My Rosacia was so bad the doctor said it was permanent but now it is gone. Also Dx in hospital with MVP 1990…my doctor does not think I have this anymore??? Interesting!...I had it while I was sick and they had med students listen. Fibrocystic Breast disease disappeared after going gluten free…and I had about 15 cysts per breast. As far as my previous lifestyle before MG and Celiac, I also never ate junk food except homemade desserts, hated fast foods, mostly ate salads, chicken, lots of fruits, veggies and pasta. Made home made whole wheat bread. I exercised almost everyday at a gym. Drank fruit juices and herbal tea and ½ cup coffee and a little wine….and never smoked. As for Dr. Mercola, I stand by comments on how helpful his information has been to me. Do I agree with all of it..no, just like Mike Adams who is edgy but has some very interesting information. Dr. Mercola almost always has research to back up a lot of his information. Do doctors make statements and then reverse them…it happens all the time. Major Celiac Disease doctors used to say there was no such thing as Gluten Sensitive…if you didn’t test positive you didn’t have it. Now they are saying there is such a thing as Gluten Sensitive and it is serious and there are more people that have this than Celiac. Now these same doctors are searching to figure out if there is a way to diagnose faster…other antibodies etc. Sorry I keep writing long posts….I do much better before lunch and then my brain goes crazy…LOL…I took lots of breaks yesterday! Whoops just saw another post and Annie's..will answer them a little later. Thanks for reading and any comments welcome positive or negative. |
Abby,
Yes, you should be able to note some differences with a four month trial, although thinking that any of your major diseases will be significantly reduced in 4 mos is probably wishful thinking, IMO. In any case, it will be a healthy experiment, and one you can continue if you are liking what you're seeing. Things like skin (acne or dry skin), breath (less stinky), energy and sleep patterns probably will show the most improvement. EFA's are important. I have found a couple of good ones that are vegetarian. Do some searches or contact me if you want specific products. I also like hemp and chia seeds. Hemp milk makes WONDERFUL smoothies! You will also need to make sure you're getting adequate amounts of B12 and perhaps iron if you're mestruating, if you are going to eliminate animal products completely. Probiotics are equally, if not more important, than EFA's as well! You could also consider seeking out farm fresh chicken and duck eggs and raw goat or cow milk for some animal protein. I get free range duck eggs for my dd who is allergic to chicken eggs and she does fine and my dh who cannot tolerate pasteurized milk thrives on raw Jersey milk kefir and milk (and ice cream/frozen kefir and yogurt are so fun to make as a treat!) I even make fresh mozarella, yogurts and other cheeses. I just looked around online for farmers to provide these products. And yes, I use raw milk despite being on immune suppressants. It's my personal choice and a risk that I am willing to take. This should be interesting for you, in any case. Good luck! |
No one knows how to turn back the clock on immune problems but to say that nutrition and how you treat your body, including things like meditation, don't help disease states is not only a bit arrogant but scientifically incorrect. Just put in "nutrition autoimmune" in Pub Med and do your own research.
http://www.ncbi.nlm.nih.gov/pubmed/23343946 http://www.ncbi.nlm.nih.gov/pubmed/23447682 http://www.ncbi.nlm.nih.gov/pubmed/23306192 http://www.ncbi.nlm.nih.gov/pubmed/23277162 http://www.ncbi.nlm.nih.gov/pubmed/23188981 There are so many studies and examples of how nutrition, sleep, body habitus, love and so many other factors come into play with health. I personally do not rule anything out. Why? How else can we learn and evolve if not by entertaining ALL possibilities? If someone is told over and over in their life that they are worthless, how do you think their health will be later in life? If a child never gets enough calcium and vitamin D and exercise when they are in the bone growth years, how will their bone density be when they are older? I do believe that some things can happen when we are young, emotionally or physically, that affect our health later in life. Genes can mutate even after we're born. And they can also HEAL. Abby, you know how hormones and the thyroid affect MG. ;) Why is nutrition any different? No, that isn't to say that MG will disappear if you do this or that. But if you haven't had a deficiency, you can't know what that does to your overall health. It's horrible. Anemia will also affect how your body can carry oxygen. So many factors come into play when looking at the immune system. No one is saying that any of us are responsible for our own illness. I didn't get that at all by what Llonghair said. I personally don't like "The Secret" because the philosophy of thinking positively and all will be well with your world is not true. Think of the self-deprecation and guilt that happens when people do think that way and are still sick. Guilt is not helpful. Forgiveness is healing and does far more to help the body. I prefer the philosophy of be the best you that you can be, welcome what each day brings and try to be as happy and useful as you can. It might not do anything to help MG but it does help a person sleep well at night and feel good about who they are. If anyone wants to improve their overall health, however, it's important to have an open mind to the possibilities of what can improve MG. Doctors in India, China, Japan and many other countries truly understand the importance of what we put into our bodies on our health. We are very medically "young" here in the U.S. I know someone whose brother, a brilliant man, has put his AIDS into "remission," if you will, by Eastern medicine. Without vitamin C, you get scurvy. Without B12, you die. Too much gluten and you have a slow death if you have CD. Too few or too many calories can cause disease, morbidity or mortality. The examples are more numerous than the naysayers. 4-eyes, it can take months to recover the nerves after a B12 deficiency. Because I didn't get care soon enough, or the right care (i.e., sublingual B12 instead of B12 shots), my peripheral neuropathy persisted for a year. I still have leftover damage. However, if I don't take B12 daily, what is left does get worse. So it can be a matter of quality of change and not eradication of symptoms completely. There aren't many MG-specific articles on this topic, probably because neurologists keep chanting that "MG is the most well-understood autoimmune disease." :cool: Even if we live thousands of years, we'll never know everything. http://www.ncbi.nlm.nih.gov/pubmed/6117124 And MG affects our overall health due to diminished muscle capacity, which I hardly need to point out since we're all painfully aware of that. You can't metabolize well, pump blood or have good peristalsis without strong muscles. One thing always leads to another in the body. Peristalsis is key to processing our nutrients too. http://www.ncbi.nlm.nih.gov/pubmed/726366 There is so much in the world we do not know or understand. There are studies that show cells thriving when notes of "love" are put in a petri dish with them. If you haven't seen the affect of certain musical vibrations on cells or water, well, it's amazing. Plants are thought to sense when someone means them harm and "emotionally" react to that. Our world is full of possibilities and I, personally, don't want to ignore any of them. I am grateful that anyone is willing to discuss this topic. We all have something to add to it. And I can't help but think of Desert Flower when discussing it. :hug: Llonghair, Is there something in your lunch that doesn't agree with your brain! ;) Too much of a certain amino acid, perhaps? Since taking Mestinon, my eyesight, as documented by my ophthalmologist, has improved. Though not the DV. ;) They were amazed by that since eyesight usually gets worse with age. That's only one example of the effect on health when you are given the proper treatment. Annie |
Dear Jillipoo,
You are so lucky to find holistic doctors which I have yet to do…I just read the best I can and keep trying to improve. What vitamins minerals and herbs are you taking? It is always interesting to see what others take. I have done juicing and do more in the summer and less in the winter…not sure why. But maybe in the summer I eat home grown Kale as a salad and have to buy in winter so like to blend in a smoothie. I did watch Fat, Sick…Dead, it is eye opening and thought provoking. I have not watched “The Secret” but will. I think this message is true. I watched one of the Cancer documents ..not sure which doctor but they will not accept a patient if they are not totally with the program of getting well. I will tell everyone something that I felt as I was finally dx with both MG and Celiac that I haven’t shared. I was so sick that my best friend thought I was going to die in her house one day. A few weeks later I got my dxs. Please do not think this is about anyone but me.... it was an honest thought that crossed my mind. When I started getting better I actually thought…hmmm do I really want to be better…I think I almost felt sad….it was a shocking thought for me…I wondered to myself…now why would I even think this???.....was it because I had some comfort in being sick and that was my life for almost 3 years…I still wonder why this crossed my mind because I was fighting to discover my illness and was thrilled when I got both dxs…I think maybe I was mourning letting go of my illness…. Is this what they were talking about in the movie, The Secret? I hope you can get your sleep under control as I know that has helped my muscle strength dramatically. If you try the bath make sure someone is near just in case you get too weak. |
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"...some bad experiences I've had with acquaintances who believe that every illness can be treated with nutrition"I meant that I don't believe every illness can be cured with nutrition alone. I was careful, though, to make it clear that the attitude I was criticizing was not the one Llonghair expressed. Abby |
Hi Annie,
So glad to see you’re back! Hope you feel a little better just don’t overdo it. Of course you can suggest anything!:D I do wonder if my Breakfast diet is okay and I really do feel great after I eat breakfast. We do eat Quinoa at dinner sometimes but in the morning I really like cashews and dates..LOL…I like sweet with my coffee and cashew are like a cereal to me and I do get 5 grams of protein from the cashews. And really I know it sounds weird but my husband who runs 4 miles every morning eats the same thing and has plenty of energy. He then has a hard boiled farm egg when he gets to work. Then he eats rice cakes and almond butter. I sometimes have an egg too. I guess I should add I do snack once in awhile but I am not as active lately because of cold and snow and only weigh 103 so don’t need a lot. If I do a smoothie it is probably 11AM and I eat some more cashews with that. I have never heard of Zeolite but will definitely research that…thanks for the heads up. Cinnamon..I could easily switch and probably a better idea for my blood although I am noticing less and less bruising and platelet numbers have risen to about 81. And wow Annie, how do you write all the time…this is really hard for me…my husbands laughing as I have lost a couple of days with him…LOL…he know when I write a thank you note it takes me an hour or so…and….this is taking me forever and messing with my brain..so bless your heart a million times over! Thanks again for your past and present help!:hug: |
Celeste and Ravenclaw,
I can see how you took my comments the wrong way and I do apologize. Abby, I too love to garden and last year was my best yet at feeling better. If we ever get a break in snow my Kale will go in soon. I was just rereading about Dr. M and aids and haven’t read the article yet…but will. My neighbor is HIV positive with Aids and had been sickly for years so…as you might have guessed I said hey, your disease is autoimmune..maybe you should try the GF diet..he was really really sick his doctor was giving up on him and told him it was his time…and of course I kept taking him vitamins to try. So one day he and his partner came over and said they started the diet…they were really strict for awhile but now cheat once in awhile. A couple of months ago my friend said his Aids numbers??? were almost zero and had been off the chart bad before. (sorry don’t remember test just that it was the important one and they were amazed at the huge improvement). The doctor was quite excited as was my friend. I know that the flu and general vaccines are a touchy subject…but I personally will never get another vaccine. And hope others take the time to really research before they make their decision. Since I have a very low white count I know about being open to viruses but since I take all the vitamins and the good diet…I rarely get sick and when I do it is very very short lived. I used to be sick all the time too. Frankly I am not into putting monkey brains and mercury into my body. I read about that somewhere and told my doctor…he said he already knew that. This was a couple of years ago…so don’t know what is in it now. Graves, not to worry my daughter gets tested once a year and if she feels off she get tested again but all has been good for I think about 5 years. She eats healthy like us as she is still at home. When she moves out will be her test to see if she can still stay graves free. I had a lot of help from Elaine Moore online. She wrote a couple of books and major science researcher in thyroid and autoimmune diseases. She is the one that guided me through that process..helping me with bloodwork…high and low copper and zinc and when to decrease the meds…my daughters endo would look at a blood test and say all was fine when her copper or zinc were high or low. Elaine was great and told me when to start decreasing meds as she was being overmedicated…she was spot on…and her endo was clueless and he was the teacher at a local hospital…yikes. That would be fantastic if you try the diet and good luck to you. Kale is good and very easy to grow and if you put it in shade it will produce all summer into the first snow and you can still sometimes pick it in early spring. Abby funny..ingredientarians…LOL:D Will write more about what to eat but you can do it…especially if you are half way there by being a vegan You will be surprised that once you eliminate sugar for a long enough time you loose the desire for it. Same with gluten. Ok gotta go husband needs attention…LOL:wink: |
Annie, just saw your second message...looks like good info and will read later. Thanks!
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My 36 year old daughter went gluten free and lost a lot of weight. She actually lost too much weight. Now every once in a while she'll have something with gluten so that she's not too thin. I think every body is different and maybe we just need to get to know our own body and how different things react to it.
As long as I can remember I've had trouble with milk. I would chronically have middle ear infections, my mood was all over the place, and my sinuses were all messed up. About a year ago I was having some other issues and thought I might have breast cancer, but when I quit taking a specific vitamin with "bovine" as an ingredient the burning pain in my breast subsided. It turns out that anytime I have any foods or vitamins that are tainted with any growth hormones that I have problems. My daughter thought it would be interesting for me to try Ben and Jerry's ice cream, which is hormone free. She bought me vanilla flavor and I reluctantly tried a spoonful. I got a very slight headache but not the moodiness. I think I have an allergy to milk but I think I'm also sensitive to the growth hormone. This is how my body reacts and just because I react this way doesn't mean anyone else will react this way. We are all individuals with our own DNA and life experiences. What may benefit one person may not benefit another. I think it's important to investigate our reactions to food and adjust it accordingly. Sharing the same diet for each individual is like trying to fit into a shoe that doesn't fit. We all don't wear the same size. Any specific diet is only going to help a select group and not all of us. If there was a cure for MG through food I would think that scientist would be studying it. Maybe they are - I don't know, but I haven't heard anything. I do believe that scientists will find a cure sometime in the near future - at least I'm hoping... |
Llonghair – I feel good like you do. I am able to ride a bike again too, and ski because my muscles are taking longer and longer to fatigue with simple actions (but as you know for me, no regular exercise, diet or medications)
Sorry if its already been written but its hard to keep up sometimes! Here are some questions:
Look forward to passing by here again sometime in the future and reading more about your personal journey towards good health and any others who have been likewise inspired..I personally like the way someone wrote previously about actively looking for good health. (that suits me at this time) Thanks in advance and have a great week :) Anacrusis |
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It seems that Llonghair has answered a lot of your questions already. Anacrusis, Were you officially diagnosed with MG? What tests and doctor diagnosed you? What do you see as the factors that brought you into remission? And was that confirmed by a doctor? Are you currently on any drugs for MG? I'm sure that would be helpful to the conversation as well. Annie |
Llonghair I also wanted to know more about your thinking as much as the vitamin and nutrition knowledge you have -
But maybe another time. I don’t totally comprehend if/how with varied forms of MG in combination with different co-diseases at different times in a life span that a certain group of people could all benefit from a similar nutritional prescription......:Scratch-Head: ....But then ok. I am now inspired to find out more about this topic. Got your point, Annie! But of course I am the one with the imaginary illness...:Crazy 2: Bottom of the class....:Zzzz: Mostly asking stupid questions.... :Poke: And keeping all of my own answers a secret from everyone else........:Deliberate: |
Hi Annie,
Thanks for some great postings and info...those were a few pubmeds I haven't read and found them very interesting. I hope you are feeling a little better this week. I am sorry for not responding to Anacrusis, I will but it has been a bad week for my mom who is loosing a 1/2 pound a day. Llonghair |
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Sending some good vibes to you and your Mom, right here: (((((((((((:heartthrob:)))))))))))) |
I have personally found that when i eat junk food mestinon does not work... i drag myself around for days until i start eating healthier.
and vitamin d3 helps me when that time of the month comes... it doesn't drain my energy like it used to! |
Llonghair was brave enough to share her experiences with us. She didn't say it would work for everyone nor did she claim any of it was a cure for MG. If only more people in medicine and scientific research would share their findings, no matter how outlandish they might sound, perhaps we could eventually find a cure for MG. At the very least, we can hope for making our situations relatively better.
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However, there are things that benefit everyone's immune system, like cutting sugar out. It's really a combo of getting rid of what is bad for our bodies and supplementing what is GOOD for them. I'm sorry your Mom is doing so poorly, Llonghair. :hug: Annie |
So I have been eating healthier. I take calcium with D3 and fish oil twice a day as well as a multi vitamin. My meat intake is drastically reduced due to MG chewing problems and I am eating fish 3-4 times a week because it is easier to chew. I eat 3-4 serving of soft fruit and 3 serving of the good veggies (carrots, broccoli, asparagus & brussel sprouts) every day. All my veggies have to be over cooked due to the MG. I cannot eat raw veggies & salads any longer. Carbs are almost entirely eliminated because I choke on them.
I found the choline article very interesting and have increased my eggs intake. I also found the link about manganese interesting and started eating pineapple everyday for that. I think my dark chocolate intake might already cover that. I cook a lot with ginger and cinnamon which are good for the anti-inflammatory. I am intrigued about the curcumin/tumeric anti-inflammatory effect but I do not think I could stomach it. I intend to start on a B complex since B1,2,6, and I think 5 are precusors of the ACh process and we already know about the b12 effect. I was also reading about CoQ10 and DHEA. DOes any one have any feedback or info on these with the MG/autoimmune disease? Is there an easy way to get these naturally in your diet. I am tired of taking so many pills. kathie |
Kathie, Might I suggest only trying one thing at a time? Then if you react to something you've added, you'll know what that something is!
Also, a B-complex might not be the way to go. Some of them have too much B6, which is not good for CNS conditions. The best thing is to get nutrients from foods. You might not need to supplement for certain things. PLEASE discuss anything with your primary doctor before you try them! Annie |
Thanks Annie, but I have been on Fish oil and calcium with D for years. I much prefer to get my nutrients from food.
But since I cannot eat much meat any more and meat is the food rich in the B vitamins, I think I need a supplement. And I read hat you really cannot get too much B. I do not want to take any more supplements that is why I was asking what foods are rich in CoQ10 and DHEA. I don't think you can really over do it if you are getting those ingredients naturally from food. thanks kathie |
http://www.drweil.com/drw/u/ART03367...Q10-CoQ10.html
Actually, it's B12 that you can't get too much of, unless you have a synthesizing problem in that pathway or with your liver. Do a separate post and ask Mrs. D if you don't believe me about the B6 and B complex. DHEA is a hormone made from the adrenal gland. Too much DHEA might increase your risk for certain cancers. Again, this is best discussed with a primary doctor, endocrinologist, gynecologist or hormone specialist. |
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