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

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".

I agree. Stuff just happens. It is not fair to blame ourselves or for others to blame us. I didn't really get the whole blame thing out of any of the posts, but I do know that some people feel that way.

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.

Abby

I just wanted to note that I have tried curing myself of my chronic house-guest with good nutrition, but so far it hasn't worked. It works beautifully, though, on my daughter's visiting boyfriend, who goes out to Taco Bell whenever I treat him with good nutrition. He keeps coming back, though.

Abby
cracking myself up

I kind of agree with you on this one. My own progress out of 5 years of myasthenic weakness happened without medication,
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.

Annie, just saw your second message...looks like good info and will read later. Thanks!

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...

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!