I have to tell you all and I have talked to Wab before. I am only down to B-1, after B-12 was said to be bad after too much, I read. I am on Mestinon 3X daily every six hours, and sometimes 4 if I get up that early and go to bed late. I ws unaware that Mrs. Aga had gone through so much in her treatment. Mrs. Aga, why did you have a thymectomy? Was there a problem with the Thymus? Mine appears perfectly normal after my CT Scan. I am wondering about Diabetes, as some of my symptoms can certainly be related. Soon I will see I believe. I may have both MG and Diabetes. Neuro is telling me to get on Cellcept, and I am hesitant for fear of weakening my immune system. Maybe she is right. I am already almost giving in, as my wife is almost demanding improvement or shut up. Listed here among th eposts is quite a bit of supplements etc, and all if which I have seen on this page. Spirulina, is supposed to be the food of the future, and I was taking it and stopped for some reason. This has almost all mentiioned here. I am debating to go with more than B-1 again for now after starting with B-Complex. I have read B-1 is the safest vitamin for me to take daily on this list. I have heard K also, I haven't been able to find it. I may go online and order all from a place. Any suggests for a one-stop shop online perhaps? Thanks.
http://www.diagnose-me.com/cond/C492395.html

Anyone on Mestinon only and a better diet and making it happen with generalized MG?

Thanks so much

TJ

Sorry, I guess I was referring to two sites having all the info:

http://www.lef.org/protocols/neurological/myasthenia_gravis_01.htm

My thymus showed up clean and normal but my surgeon and MG specialist still insisted on the surgery. I was lost at that time and felt helpless - (if I could go back to that decision again, I wouldn't have done it) but that is only my personal opinion - I obviously have had it done and have a nasty scar to prove it. However I am not feeling better because of the thymectomy - at least I don't think so, because occasionally I had some 'party food' and had a relapse in my symptoms the following day. It is definitely food and candida related in my case.

Swallowing a bunch of pills isn't fun - that's why I usually choose the foods that will give me these nutrients naturally. A spinach salad with flax oil will give me lots of Vit K and omega 3 oils... same with other foods - I urge everyone to get familiar with food nutrition - your health is on the line - and now the internet makes it so easy. Print out things/ bookmark it and review it ofter to learn what nutrition is in each food. Eating healthy isn't only about having a salad a day, learn what foods you should avoid - such as sugar (TJ with your diabetes threat - you should), wheat, vinegary foods, processed foods etc.

I got better I think because I targeted Candida. My first months were to completely avoid sugar in all forms - juices even most fruits, and dairy, no mushrooms, no vinegar foods, no alcohol.
So eating healthy foods wasn't as much the issue as avoiding the foods that I couldn't eat. That was very hard the first few months - eating is very emotional ;)

Along with this Anti-Candida diet, I took grapefruit seed extract and probiotics regularly. Now I take the grapefruit s.e. once a week but still continue with the probiotics (because I'm dairy free - I don't get the good bacteria from yogourt/ kefir) so the probiotics are a must.

Let's say you want to try this Candida diet - and stick to the foods-to-avoid list, what's left to eat, is actually VERY healthy food with lots of vitamins.
If you know what's on your plate and make an effort to add more specific vitamins, you won't need to pop in so many pills.
The only ones I've found to be hard to find in food are: vit D, lecithin, coenzyme Q10, grapefruit seed extract, probiotics - if you're off dairy oh and Spirulina ;) unless you can get your hands on some algae ;)

Let me know if someone wants to go and do the Candida cleanse ?

Take care everyone!
Ella

Mrs. Aga, I am now off the mestinon and hoping to get off the imuran in a few weeks. I've got to do another candida cleanse and clean up this malabsorption problem. I use Fiberzon from Amazon Herbs for that. It works great, but the first few days you feel all the little holes being plugged and it is a full feeling. After that, life gets much better. They tried to give me a steroid inhaler for my current bronchitis, but no more steroids. My body needs a break from the candida overgrowth. I like the renew life cleanses also, they have all the goodies that you are looking for whereas some cleanses miss some key ingredients.

Has anyone found a fish oil capsule that's not the size of your thumb? I tried the big ones for about a week and they get stuck then I get heartburn. I can't do that. I considered how many anchovies and sardines I would have to eat per day to make up for one capsule. Not sure that will work, lol.
Thanks,
Cathi

i've been taking nutritional supplements since the moment they thought I might have MG. I'm not a big meat eater and getting enough protein has always been an issue for me. I'm drinking protein shakes in between meals now to get up to a reasonable level. My morning shake aslo has 5mg of creatien. I takes "stress tabs" that have all the B vitamins and vitamin C. And Lecithin granules. Lecithin has one of the main building blocks of acetylcholine, Which we are all asking our bodies to make more of. make sure that you get high quality supplements, cheap grocery store supplements often use synthetic vitamins that our bodies can't really use. You want your vitamins to come from natural usable sources.

Calynn, Thank You!
I couldn't have said it better myself. I am so happy someone else is on board and taking care of themselves the gentler way ;)
Stress Tabs? is there ginkgo biloba in it? That stuff is amazing ;)
Look into Candida also. Good luck to you.

Kim, you're so right about that awful feeling after starting a cleanse - you feel worse and you want to give up. But that's a sign that there is yeast present and you're killing it. Stick with it as long as you can and stay focused on the diet.

Cathi, fish oil huh? yes they are HUGE! You can get it in liquid and mix into smoothie or something. I'm a huge fan of Flax oil instead and that goes great into salads and it doesn't have that fishy smell - obviously. Udo's Choice has some terrific other oils that will give you great omegas.
Please let's keep this post alive and positive - let me know how your progress continues guys.
Ella
PS. I've been great with my diet, no dairy, do meat, no sugar, no wheat, no eggs.... - but I have to say today I finally craved pizza ;D - - anyone know of a vegan, gluten-free one? ;P
xoxo

PSS. my remedy for squeezing a bit too much sugar or eating gluten - is to have a dose of GRAPEFRUIT SEED EXTRACT, followed by a good PROBIOTIC.
Anyone see have any tricks they want to share ;)

Ella, I switched to oil but I've tended to be nauseated since surgery and I only managed to get the oil down three times. I think I'll try the flax oil. I love salads and could do that. Thanks!
Cathi

Cathi, plain old flax seeds are much cheaper and you can do many things with them. I grind them up if we want fried chicken and use them as my coating as opposed to wheat. When I put them in a smoothie, I grind them but not as well so I will have the added benefit of keeping a clean colon. My son will snack on them straight out of the bag, they have a slight orange flavor. We also put them whole in our salads. I cannot do the fish oil either, but I tested sensitive to many different types of fish. Kim

I don't have MG, but I have a disease I was born with, Escobar Syndrome. I have considered supplements myself and tried some. For a bit, I was trying some raspberry gummy B12 supplements, but I didn't notice a difference in how i felt at all. Also, I have used Milk Thistle and different liver supplements over the past couple of years, because of the drinking problem I've had.

I've tried cutting down on my alcohol intake a lot, which is extremely difficult when you feel so bad all of the time regardless and get so depressed and want to escape how bad your body feels, because you never experience any relief.

But I average drinking heavily probably one night out of the month now, which is a lot better than how I used to be. I'd drink a couple nights a week very heavily.

I try to keep my diet fairly healthy with veggies, and I average drinking a Life water everyday since I hate regular water, and at least this does have some vitamins in it. Also, I have got to where I try to drink Ensure everyday, though I was doing that religiously for a couple months and noticed no difference.

That's what is discouraging to me is even if I feel like I'm doing good things for myself it's not making a difference in how I feel. I feel like my breathing problems are what is causing me to feel so bad, and that since I was born with my disease from birth and it causes physical deformities in my body that no supplements are going to really help me.

I have read about different supplements, though. I thought about trying Co Q10, Vitamin D, and also the Spirulina thing interested me. However, I'm unsure of where I should get these things. What type is the best to get exactly, or are they all pretty much the same? I'd rather order mine online.

Also, I was going to do some Flinestone gummy multivitamins like my friend says he does (but he's pretty healthy anyway). But I'm concerned about overdosing on vitamins, because there is such thing and can be toxic to the liver. So, I figured I should try to either do the multivitamin thing or do the Life water and Ensure thing like I'm doing and not both, because that's too much.

For a bit, I used to take those Viactiv multivitamins for several months. But like many things I've tried, I've never seen really any results on it making my body feel any better or different. Also, I read online that multivitamins don't really make too much difference in the body usually.

Oh yeah, I had heard this one supplement was supposed to be really good for the body. I forgot the name of it. It was something 65, and it was supposed to help repair muscles that are damaged with aging and also even helped some older guy with his lung capacity a lot. But again, I always kind of think that's more for already healthy people and not someone born with things wrong with their genes and actual body structure like with Escobar Syndrome.

Okay, I just looked it up, and I think that one supplement I was talking about at the end is called TA-65. It was on the news not too long ago and was supposed to be a really good supplement for the body and to slow down the aging process and repair muscle tone lost over time and lung capacity.

Actually, and I forgot to mention one other supplement I was trying once that I didn't notice a difference with called L-Carnitine. I think that can have something to do with muscles.

Oh yeah, and I have a question about the diet thing. I definitely don't think I can do the perfect diet thing like you're doing, MrsAga, but I definitely commend you if you're able to be that dedicated to doing it. But I was wondering.... If you eat like certain things with veggies or tv dinners like Lean Cuisine and Healthy Choice (which seems to be healthier than Lean Cuisine), then is that almost the same, or is that considered processed food and eliminated on really helping with nutrition?

Kim, what is the recommended dose of flax oil, or flax seed, to be beneficial for cholesterol reduction? Is it the same as recommended for fish oil? I've used flax seed in the past, putting it in my baked goods and cereals. The extra benefit of adding fiber is great for my family but the mestinon really makes me watch how much fiber I take in.

Sweetluv, it sounds like you've had a hard time of it. I'm glad to hear you're looking at diet and supplements to help you feel better. Even if you don't notice your body feeling better you know it IS better to give your body things that are good for it. Definitely the drinking has more negative effects than the temporary good feeling it gives, but it sounds like you are well aware of that. I keep lean cuisine on hand for days when I just don't have the energy to make dinner but it is full of salt and though better than some frozen food it's still not as good as fresh. Sometimes you just need food though.
Cathi

A TV dinner every now and then won't hurt, but you don't want to eat it every day. Our bodies have the ability to process the junk we put into it as long as we don't overdo it. If you want quality supplements Amazon Herbs is one of my fav's and is online. I would recommend talking to a licensed herbalist. This woman saved me wen the medical field couldn't figure me out. You can call them all the time with questions.

I would start at a Tablespoon of the oil a day til it is well tolerated, then bump up to two. I had no issues at all and used quite a bit of it in my smoothies. The seeds are the same if you don't want to invest in the oil. When you crave sugar like crazy the smoothies and flavored teas are very good substitutes. I had to go almost a full year with no sugar and learned lots of tricks to make me think I was getting a sweet snack. Still can't drink a soda unless it is used to help with nausea. It's funny how your taste buds can and will change.

Thank you Kim. I found mega red at the store yesterday. The pills are much much smaller than regular fish oil. I also found flax oil in the natural section of the grocery store and it was reasonably priced. I think I will try both. The mega red looks like a very small dose. I started it yesterday and if all is well in a few days I'll add the flax oil. I've learned to add things slowly.
Cathi

Thanks for more great tips guys.
To reduce cholesterol Cathi, look into cinnamon - it's a great spice that is sooo good for you - I add mine to a tea w/ milk or coffee if I'm ever having one - that along with ground cloves - both high in manganese
http://www.whfoods.com/genpage.php?tname=nutrient&dbid=77
(we dip apple slices in cinnamon as a snack - my daughter loves it)

Sweetluv, I really feel for you that you're going through such a difficult time and it's great that you're looking at a healthier lifestyle. Please be good to yourself and your body. How we feel has a lot to do with our diet and it's never too late to start a healthier lifestyle.
ta 65 sounds interesting but these new inventive drugs can have a risky downturn - and it looks like it's super expensive. L-carnitine sounds pretty good. With any supplement, (or diet also) you would need to dedicate at least 3 months to see improvement - and that also depends on your lifestyle and the foods you do eat.
I like this supplement called IntestiNEW, it has a high dose of L-glutamine http://www.nutritional-supplement-educational-centre.com/benefits-of-l-glutamine.html

About diet, my focus wouldn't be about frozen or not frozen foods but what the ingredients are. I read the ingredients of everything and I look for - first of all - all short list, and names I can read and understand. Get familiar with common fillers, preservatives, artificial flavours/ sweeteners etc. - those are the reason these processed foods are harmful. I would suggest to stock up on bags of frozen vegetables or fruit that you can quickly throw into a pot and make meals. Frozen veggies preserve their vitamins and they're great to have around for convenience. If you need a few tv dinners around for emergency, try to balance with a healthy salad to go with it. There are ways to maximize the vitamins you take - look for dark leafy greens like spinach/ kale, broccoli, add seeds/ nuts to salads or snack on them when you have sugar cravings etc. Canned foods are also amazing to keep around. Look for ones that have just the vegetables in it and try to avoid additives. They too make life easier and can help to make a meal in minutes. I am vegetarian, so I often open up a can of beans and they get added to salads, soups or I grind them to make spreads for sandwiches. (like hummus) Plus a few cans of sardines, herring or cod liver etc, are also a great meal in 0 time. that with a few veggies/ salad and a nice slide of all-natual bread - - you get a great meal ;)

Most importantly, just take care of yourself, try to eat well but also try to relieve your stress somehow with yoga, exercise, being in fresh air etc. I think it's also important to occupy yourself with something positive you can do so that your energy goes in that direction and not a destructive one. I found creative things really picked me up, like photography, crafts etc. really helped me.
Maybe if you tried something that inspires you, either in arts, painting or maybe writing - there are tons of classes that help guide you... I think it's great to try something new because you never know how you'd like it and what you can do until you try something.
A positive hobby can really help to create this positive outlook in you and fuel you in an exciting positive direction.
I hope you'll try something ;) just to see how it goes....
I wish you all the best, stay focused and strong and believe in yourself.
I am thinking of this song as I write this, so I'll just give you a link :)
I hope you like it ;
http://www.youtube.com/watch?v=_e39UmEnqY8
"there is a crack in everything - that's how the light gets in".....

xoxo
ella