Anacrusis, This is being taken out of context! When someone has MG and is not in any form of remission, no, you can't "control" it. You can "manage" it via medications, rest, staying out of heat, etc. But you cannot control the disease state. It is unpredictable, even when managed well. The point in saying this is often for newly diagnosed MGers who think they can push and push and not get worse, thereby ending up in an MG crisis. The only thing in life one can "control" is oneself, IMO.

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......

....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...

Bottom of the class....

Mostly asking stupid questions....

And keeping all of my own answers a secret from everyone else........

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

Oh My.....You do have enough on your plate, Llonghair

Sending some good vibes to you and your Mom, right here:


((((((((((())))))))))))

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.

It can't, Anacrusis. What works for someone might not work for someone else. Just like some MGers don't benefit from Mestinon or IVIG does squat but plasma works. In Eastern medicine, the treatments are individualized for each specific case. That's too "hard" for Western medicine. It's all an alogorithm, for the most part.

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.


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.