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." 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.

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.

Annie, I looked over my post to see what I could have written that made you think I thought that nutrition can't improve diseases and...oops...discovered that I did sort of say that. Sorry. I wrote about

"...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!

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!

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
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

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...

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:

• What type of MG were you diagnosed with?

• Which type of meds did you try and what was the reaction?

• What was the tempo of onset of symptoms – ie gradual/sudden etc?

• How did you find out that your improvement was to do with diet and nutrition and not that you were having a spontaneous MG remission instead?

• What helped me was constantly observing patterns – even fluctuating and changing ones. That way I understood for example to keep away from heat, certain antibiotics, certain food consistencies, certain tasks at various times of the day etc etc. So I felt in control of my understanding of physiological responses via myasthenic patterns, I felt in control of my emotional wellbeing for various reasons but never unfortunately felt in control of the overall direction of myasthenia during a 5 year period. It´s as though nothing could get in the way of its progression to worst peak likewise nothing could get in the way of the slowly progressing remission either. (That is my experience and I am ok with it)

• Have you observed certain patterns with MG and diet like you have with Celiac disease and gluten?

• We are told on this forum that we can not control MG. But it appears to me as though you have. Do you see it in this or in another way?

• Have you found a good positive physician that is able to keep up and support you during all this time?

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