The only thing that improves for ME (I do not have MG however)
in the heat is my thyroid problems.

Hypo people feel much better in the warmer temperatures. So do make sure that is checked just to make sure for you.

Jana- Don't know what's with that, all I know is that is was real. I felt better in the warm sun and temp. But then again I was born and raised in SE Arizona so that's what I'm used to. When I'm ill I always feel better in the sun no matter what the malady is. I always tell everyone that my blood is based on chlorophyll not hemoglobin.

Hi all-

Here are some of the links that I based my regimen upon. The first one, by Dr. Walter Last, was to me the most important.

http://tinyurl.com/26qtn9p

*edit*

http://www.optimox.com/pics/Iodine/IOD-09/IOD_09.htm

These will get you started and to thinking.

Oh by the way, I am NOT going to ruin my thyroid with the supplemental iodine I am taking. To the contrary - when I started taking it I felt better and my fingernails got stronger. Interestingly, they had become thinner and rather brittle for the year prior to my MG. I thought "oh well, another sign of old age". Didn't know it was also a sign of iodine deficiency. And after almost a year on extra iodine my thyroid tests came back just fine and my fingernails are still strong.

In a later post I'll detail some more what I have done and am doing as well as more info concerning iodine and manganese. Probably going to be several days though before I can git 'er done.

your second link is leading to an expired page so could you please correct the link.

Yes, it's changed a bit since I was there last. However, if you click on Myesthenia Gravis in the neurological column it will take you to the page I originally intended. I just did it and it works.

you will need to post the exact link please as that is a page with products for sale and so not allowed as it stands

edited in:
sorry but in the absence of you editing, I have had to remove that link as we dont permit general links to websites with products for sale that way

only a specific link with information relevant to your topic is ok

Aries,
Have you ever been tested for Celiac Disease? There is a higher incidence of MG in people with CD. When our youngest daughter was diagnosed with CD, I found out that I had it as well - and now I am being evaluated for MG. I've been on a gluten-free diet for 2 years now, and I have a feeling that kept my symptoms from being worse than they are.

What most doctors don't realize is that CD is MUCH more common than originally thought. It is currently estimated that 1 in 133 people have CD, and 97% of them don't know that they have it - that's 3 million folks in the US who have CD, and 2.9 million of them who are walking around without the first clue that they would test positive!

The bad thing about the blood test for CD is that a person will only test positive for it if they already have Stage III or higher damage to their intestinal tract; anyone with less damage will not be considered to have CD, even though some researchers think that they do, indeed, have it.

Many more people are believed to be sensitive to gluten, and they will NEVER test positive for CD, even though a gluten-free diet will help them immensely. The problem with gluten sensitivity/CD is that consuming gluten causes the villi in the intestinal lining to become blunted, which in turn causes the body to not absorb all of the nutrients in the food which is being eaten.

There is a LOT more information on the website *edit* (I can't post websites yet....) - that's kind of the "bible" for people who have questions. The good news is that for most people, following a strict gluten-free diet for life will eliminate a LOT of problems (just click on the sidebar at that site for a look at conditions that are associated with untreated CD). Most people's intestinal tracts are back to normal within 1-2 years of starting a GF diet. More food manufacturers and restaurants are offering GF options, as more and more people are becoming aware that they have CD.

Once a person's intestinal tract is healed, they will start absorbing more vitamins and nutrients, so many of their problems will go away. Unfortunately, with some conditions the damage has already been done - that is why it is so important that more and more doctors become aware of how common CD is in the general population; the sooner it is diagnosed, the fewer complications a person is likely to have later in life.

Interestingly enough, some soy food/milk products have an incredibly high gluten content, so some people who are eating "healthy" may actually be doing more harm than good! I hope this information is helpful -

Rob, I agree with you -- I don't follow this 100% -- far too difficult for me. And it is HARD to get the foods that are guaranteed pesticide free in my area unless I grow them myself (which I DO in the Summer ).

I was a patient of Dr. William G. Crook -- a leader in the Candida movement -- I was tested for allergies more than 30 years ago -- put on the regime -- taught how to cleanse my system and look for problems. I avoid CHEMICALS like they are the PLAGUE!!

I have very serious Bulbar -- can no longer work -- BUT, I have managed to stay OUT of the hospital so far (knock wood). In the Summer, I edge closer to "normal" -- except I can't talk worth anything.

Anyway, I ONLY use Mestinon -- and the basic tenets outlined on your first link. Whenever possible, I try to get my vitamins and minerals from foods -- I do, however, take fish oil, Vitamin C (mostly when sick with an upper respiratory), and D3 (during the winter). Yogurt is a mainstay -- active cultures are a necessity.

Home sick today with some respiratory crud I caught from the wife when she went through it last weekend. So I get to play on the computer for a bit. Whoopee.....I don't like my job but I'd ALWAYS rather be at work and healthy as oppposed to at home and sick.....


For teresakoch-

No, was never tested for celiac disease. The way I felt better and the improvement in my bowels when I eliminated gluten convinced me that I was suffering from some sort of intolerance and I figured no further testing was necessary. Anecdotal I know, but I wasn't going to eat gluten again just so they could run tests that would tell me I shouldn't eat gluten!

For Jana-

I had bulbar and I felt better in the heat.
You have bulbar and feel better in the heat. Must be something helpful there but i wouldn't know what it would be.

When I said I don't do everything I meant that I don't follow every recommendation and supplement listed on the websites. I DO stick with my regimen 100%.

No wheat, rye, barley, oats in any form.

Distilled water only. Bought a nice used distiller on Fleabay last year so we make our own.

No fluoridated toothpaste.

Everyday - vit C, B complex, chelated magnesium w/zinc, DHEA, manganese(as manganese amino acid chelate), iodine(as iodoral),
selenium( as L-selenomethionine), saw palmetto(for prostate).
About every third day I will take a multi vit and a large dose of vit E in lieu of the B&C vits but still take the others listed every day. I will take ginseng when I have it. Calcium when I remember to take it. I wash my supplements down with about 1/2 cup of pure carrot juice(for the vit A).

No junk food! No garbage! No sodas and absolutely NOTHING that contains any artificial sweeteners at all. I drink distilled water and tea of all kinds and coffee maybe once a week. Occasionally I break weak and sweeten a cup with sugar or molasses for a treat.

I consume no dairy other than butter and occasional yogurt.

Spices I use every day are turmeric, tarragon and thyme.

I eat lots of bananas, usually 2-4 each day.

2-3 beets a week.

Fruits & vegies of all kinds, rice - brown and white, eggs, beans, meat, potatoes(infrequent), yams, LOTS of greens and things in my daily lunch salad. Cruciferous vegies are consumed cooked not raw.

That's the core of what I do. That is what made me well. That and the attitude that I WAS GOING TO GET WELL! Four months of following this and I got well. As I said before not every day was better than the day before. There was the occasional "one step forward and two steps back", but at the end of each week I was better than I was at the beginning of that week. Every little bit of improvement in my condition gave me the strength to stay the course and not stray despite what the Docs, friends and family were telling me to do.

PATIENCE - PERSEVERANCE -POSITIVE ATTITUDE -

Will this work for you? I don't know. What exactly was it that worked for me? Don't know that either. I still believe though that MANGANESE, IODINE SUPPLEMENTATION and possibly DHEA are at the center of it. For all I know I may wake up tomorrow just as bad as I was last year - but I don't really think so. At any rate I don't worry or dwell on it.

Enough for now. My two fingers are tired! Anyone who wants the missing link or the info from that link needs to PM me and I'll get it to ya-

Later,
Rob D

Oh Forgot! Huperzine A - used that also. Tell in a later post.

Hi All-

About three weeks after my problem started was when I got my first confirmation that I had MG. The neuro prescribed mestinon, gave me next to zero info or hope and sent me on my way, telling me to come back in 30 days. He was a real lop. That's why I eventually went to a second neuro.

I had already decided I was going to try to treat the cause rather than the symptoms especially after reading about all the possible negative side effects of mestinon. So I never took any mestinon.

I had run across info about huperzine A during my net research. It is also an acetylcholinesterase inhibitor allegedly without any side effects at all. Touted as being helpful for victims of MG. I decided I would give it a shot even though it was for symptom treatment only. I was pretty bad off at the time - had already lost over 15lbs and was getting weak because I couldn't eat - so I was looking for something to help me through a bit. But not mestinon.

Bought Huperzine A and took it. Had no idea of what dosage to use so I decided on 50mcg twice a day to start. Stayed with that for about a week. That dosage did not seem to be effective so I upped it to 50mcg three times a day. My overall trials lasted 3-4 weeks. I experienced no positive effects on my MG during this time so I eventually quit taking it. What is interesting to note however is that while I was taking it I experienced an improved mental clarity - that is my mind just seemed to be sharper and felt as if I could think quicker and more clearly. That was a good thing! During the whole time I was taking it I noticed NO ill effects whatsoever. None. No worries there at all.

Further net research revealed that Hup Z is very receptor specific. It targets recptors in the brain and was being used in trials for alzheimers and dementia as well as MG. Very little goes to the muscles when it is taken orally. Come to find out that the trials where it showed promise for MG treatment were at much higher dosages (400mcg and up) and were being given intravenously.

SO - I can tell you that it DID seem to help me mentally but there was no noticeable effect on my MG symptoms. And definitely no outward side effects of any manifestation were noticed.

Gonna experiment with it again some day just for the heck of it to see if will clear up my occasional "foggy headed " mornings but that's for another time and not this forum.

Next post will be about Edgar Cayce and why I believe so strongly that iodine, manganese, and proper diet are key in treatment of this disease.

Rob D.