Symptom free without drugs
 

Hello all-

I have been gone from this forum for many months. I originally posted earlier last year after I had been diagnosed with MG. I was experimenting with alternative methods of treatment at that time.
I am returning to post what I have learned in the hopes that it may benefit others who suffer from this rotten disease.

A quick synopsis - I am a 57(now) year old male who on 7-10-09 awoke with a VERY severe bulbar form of MG. No problems or hints prior to that. Previous night fine, next morning literally paralyzed from the neck up. I won't take time now to describe all the symptoms - suffice it to say that anyone here already knows. I was serum positive (high) for the three markers they test for in the blood. Two neurologists came up with the same diagnosis. My symptoms were severe and matched those of the folks on this and other forums. I had MG and I had it bad.

Long story short. I had decided that this disease did not fit into my long term plans! I naively believed that a certain set of circumstances caused it to happen, therefore a certain set of circumstances could make it go away. Thus began many, many, many hours of research on the internet. Using the knowledge of those many times smarter than I will ever be. I decided upon a course of action and stuck to it.

During this time - and against all threats and advice from my doctors, friends and family - I did not take any medicine or treatment for the MG. I did not want to mask any symptoms as I would then not be able to tell if anything I was doing on my own was working or not. No mestinon, no prednisone, no nothing. Scary? Yes of course! When every doc tells you that if you don't take these drugs you will probably die then yes, that's scary.

More long story short - I made dietary changes, added some daily supplements and went forth with perseverance, patience and prayer. Four months later I was symptom free and have been now for the past 6 months. It was SLOW improvement overall. Not every day was better than the previous day, but every week was better than the week before.

I have kept this post short for many reasons - I two finger type so anything takes forever for me to do, I would rather answer specific questions than take time to type info that no one is interested in (there is a lot of info), and did not want to make a long post no one would take time to read.

Not interested in hearing from naysayers. When I asked the two neuros if anyone ever got better by doing nothing they both said no. I do not consider myself "cured". The disease - at this time - appears to be managed without drugs. My blood markers are still high yet I have no symptoms.

It's like my gout. I have the disease bad. My blood uric acid level is very high and has been for 25 years. However a little bit of magnesium taken every day now keeps me symptom free. I'm not "cured" but I no longer suffer from the disease. I will if I stop taking the magnesium though! Been there done that!

If anyone is interested in more specific information I will do my best to answer all questions on or off forum. Please be patient for responses as I am not on here every day.

I live in Southeast Arizona. If there is anyone on this board in the Sierra Vista, Douglas, Willcox area that would like to meet and talk I'd be glad to do so.

I HAVE NOTHING TO SELL AND NO AGENDA TO PUSH.
I AM NOT SUGGESTING THAT ANYONE STOP THEIR MEDS AND DO WHAT I DID.
I did not create or discover anything. I used information posted on the net that has helped other sufferers of MG in the past.
I merely wish to pass on information that may be helpful to others.

Rob D.

Wonderful news!

I am open to hear of ways to help my MG!

This post came at a perfect moment when I came to the conclusion that Magnesium supplements help my MG. What perfect timing! It was just this morning when I was reviewing my MG journal, that I decided Magnesium helps greatly.

I was taking Magnesium twice a week, specifically "Amino Acid Chelated Magnesium - 100 mg" for a few months and I had improvement of my MG and had to cut back on my Mestinon since I started to get overdose symptoms. It took about 6 weeks for the Magnesium to start working. (I posted on here when I had these overdose symptoms, I was very worried and thought my MG was getting worse or I was developing some other health issue)

Just to be sure, I stopped the Magnesium, and my MG returned to "normal" and I had to increase my Mestinon back to the previous dose.

So I started the Magnesium again last week and today I am starting again to feel much better...and today I am feeling a little bit of a Mestinon overdose so I am going to take less Mestinon. And I am going to increase the Magnesium slowly until I am taking one every day.

Before I tried Magnesium I read a great post on this site by one of the moderators (Thanks mrsD!) about Magnesium and I felt hopeful.

http://neurotalk.psychcentral.com/showthread.php?t=1138

If anyone wants to take Magnesium please be careful since it is on the list of things to be cautious with if you have MG. I am going to look for that post about Magnesium. I did a lot of research before I decided to take Magnesium

This experience makes me feel hopeful that there are other things to do to help.

Rob, I want to hear more.

I know there is no cure for MG, but it does seem like a change of diet/habits can make MG much much easier to live with, with a chance for a symptom free life. Just that chance of feeling a little better is enough for me to change my lifestyle and eat differently, much preferred by me over drugs if it is possible.

Nice to meet you.

I am glad to see some of you have improvements with magnesium.

If you keep to 1/2 the daily requirement, about 200mg elemental, from a good source (not oxide type) you will still be within the RDA. Magnesium is needed for many many biochemical systems, and we just cannot live without it.

You can choose foods that are good sources, if you rather go that route.

www.nutritiondata.com has a good database on foods, and what they contain.

But 3 oz of unsalted almonds will give you 270mg! I have some other food suggestions on my magnesium thread:

http://neurotalk.psychcentral.com/thread1138.html

Steroids deplete this mineral, and so do diuretics including caffeine.

DesertFlower -

You have a PM. Stay in touch please but remember to be patient for my responses. I still have to work for a living (bummer!) and won't always be on here everyday. Hope we can meet sometime.

Rob D.

Rob,

Your path is of interest to me as well ~ when time permits can you post more or send me a PM as well? As a new member I am unable to initiate the PM feature.

Hi Kachina-

Yeah, I don't seem to be able to PM you either at this time. I haven't checked but I guess there are restrictions on some things for new members? Do you have to have a certain number of posts before the PM option kicks in? Or something else?

Some of what I'm passing on contains links and I found out last year that the mod/owner frowns on posting links. I could tell because she cut them out of my post!:eek: So I really need to PM or email you.

So either post a hello to everybody one at a time until you get enough posts for your PM priviledge to kick in or post your email. I'll get back to you either way

Rob D.

Rob, I don't think you can post links until you have posted ENOUGH messages in the forums. I don't think you were being "picked on" by a mod -- I believe it is a safe-guard to protect the forum from spammers.

yes, Jana is correct, and when you tried to add the links you would have received a pop up message clearly explaining this. The software will automatically block links by new members

we protect our members from spam by ensuring that only active members can post links, so *everybody*, not just you, has to first pass the default number of posts prior to being able to post links, as well as to PM.

you should already be able to do both now

also please in future, if you have any questions related to moderation, either PM us or use the Contact Us link at the bottom of each page.

thanks

just adding the link to your first thread where I see the linking guidelines were discussed with you
http://neurotalk.psychcentral.com/thread104623.html

Rob, just reading your "old posts" -- you said that the heat and sweating often made you feel better -- ME, TOO!!! What's with that???? Most MGers think I'm whacko for CRAVING the Summer and the HOT weather -- 'cept for Desertflower :).

I've been wondering if my antibodies were somehow pouring out through my sweat :D!!!

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.

Links Time
 

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

Get tested for Celiac Disease
 

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.

Two replies and general info
 

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!:rolleyes: 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.

Huperzine A
 

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.

If you will, what doses of manganese and iodine (as Iodoral) have you taken?

People who know me here understand that I am very encouraging of posters to improve their life styles, and to examine if diet or some deficiency state might be affecting their health. With Peripheral Neuropathy for example , deficiency states of B12, B6 and folate, and magnesium are often triggers for nerve pain.
So I have made posts on the various forums here about testing and how to improve health.

I do think following the gluten free diet is very helpful for many people with autoimmune issues. That is a whole subject all by itself! This site is very good for reading and learning about removing gluten:

http://sites.google.com/site/jccglutenfree/

jccgf posts here on our Gluten forum too. She is a great resource and patient and helpful.

As far as you, Aries, are concerned I would wonder what your trigger was. Did you have vaccines before your bulbar symptoms appeared? Did you have thyroid workups? Males are showing up more and more with thyroid disease, mostly because of autoimmune triggers and also thyroid mimics in the environmental pollution arena. When the thyroid is swollen, swallowing is difficult, and choking common, because the laryngeal nerve can get compressed (this happened to me with my previous goiter, for example).

I wonder if you, Aries, had a drug treatment with a known nerve toxic drug before you experienced your throat problems?
I am still working on this thread, Statins will be my next post.
http://neurotalk.psychcentral.com/thread122889.html
Some drugs damage nerves quickly, others take time.

I do have some concerns about Iodoral, and manganese.
The safety of Iodoral is not proven, IMO. Its use is based on one OB/GYN who experimented on his own patients with it.
This thread voices my concerns about high dose supplementing with iodine:
http://neurotalk.psychcentral.com/sh...ghlight=iodine

I also have concerns about manganese. We inhale this commonly from gasoline fumes. Manganese is also quite plentiful in vegetables and this link has some examples:

http://www.healthalternatives2000.co...ion-chart.html
another good food content site is www.nutritiondata.com
this site is more complex to use, but has more foods listed.
I recall one study I read about prison inmates, who the majority it was found had elevated manganese levels. Manganese can damage the brain and give Parkinsonian type symptoms, and also causes anger, rage and aggression. I would therefore be very careful with manganese unless a doctor okays its use.

This monograph by the Linus Pauling Institute gives good manganese information too:
http://lpi.oregonstate.edu/infocente...ese/index.html

I would caution readers here to be careful with manganese and iodine supplements, and do alot of research on them etc.

This is about the best information I have found about Huperzine A:
http://www.webmd.com/vitamins-supple...INE+A&source=2
I consider this substance really to be a drug...and so therefore I would urge readers here to have some medical advice and supervision while using it.

And lastly as a moderator here too, I will put up our medical disclaimer as a reminder.
Many of us here have improved our own health by using alternative medical means. But for those with serious, life threatening conditions, those readers should always keep their medical supports on hand and include doctors in their decisions involving herbs, or supplements. Consider drug interactions and interactions with foods as well.

Edagar Cayce
 

For those of you who have never heard of Edgar Cayce he was a well known and documented psychic who lived from 1877-1945. Best known for his readings on health and spirituality. Many books about him are available covering various topics. The following is a Wikipedia link that gives some basic general information about him.

http://en.wikipedia.org/wiki/Edgar_Cayce


Personally I am a believer in Cayces' health readings as I have utilized various treatments and products in the past with great success. Particularly castor oil packs.

The first thing I did after I suspected I had MG was to go to the Cayce files to see if there had been any readings for the disease. There was one, given in 1940 for a 36 year old male. It was case #2207-1. The recommended treatment seemed vey odd to me at the time I read it and quite honestly seemed to make no sense. It wasn't until later when I read about work done by others and their successes that everything started to fall into place.

The readings stated that in this instance the condition was partially prenatal and the fact that it had not progressed as he got older was an unusual circumstance. According to the reading this was because of the physical activity and the diet to which the subject adhered to. Unfortunately his diet was never detailed but Cayce was a proponent of proper assimilation and eliminations. So perhaps he was just eating well and going regularly. Or maybe he was already eating other foods that were helpful with his problem. Don't know. But evidently diet is important.


In a nutshell the treatment consisted of taking iodine (in the form of atomidine - which is iodine trichloride) for ten days then stop. Then for the next 14-18 days take one ounce of fresh carrot juice with the noon meal and one ounce of cooked beet juice with the evening meal. Stop and go back to the atomidine for ten days, repeating the cycle for 4-6 months.

What do we have here?

Well the iodine part is easy. No question that iodine is necessary for proper thyroid function. And back in the time of this reading iodine deficiency was very common.

Beet juice and carrot juice? Had no idea at the time what that was about.

So here I am about a week after my problem started, the symptoms are getting worse and I'm still not sure of what I had(confirmed diagnosis was still 2 weeks away).

Figured what the hell, if it's MG this may help and if it's not then it won't hurt.

I cleaned up my diet and did my best to follow the info from the reading. Noticed that after about three days my symptoms didn't seem to be getting any worse and I just felt better in general. Two more weeks go by and it's time for my second visit to the first neuro. By then I felt as if there had actually been a teensy tiny bit of improvement in my condition. The Neuro confirms that I have MG, but was not EVEN interested in hearing what I was doing to help myself. He says "here, take these pills. They will make you drool, sick to your stomach, vomit and have diaharrea. But don't worry about it, you'll get used to it. Come back and see me in 30 days".

I don't think so "Doc".......... But I digress.

Further reading and research made everything fall into place. The thyroid and thymus are the two most important factors in a very complex immune system. Iodine supports the thyroid. Other researchers believe that manganese supports the thymus and that vitamin A helps the thymus utilize the manganese.

Carrot juice= vitamin A
Beet juice= Beets are about the highest food in manganese content.

So in 1940 in a psychic reading Cayce gave the treatment for MG that later researchers apparently have confirmed.

This is how I got started. I changed the form of iodine I was taking and use manganese amino acid chelate instead of beet juice. Added and discarded other supplements as I went along based on whether I felt them to be helpful or not. Cleaned up my diet and quit eating any foods that I suspected an intolerance to.

PATIENCE _ PERSEVERANCE_POSITIVE ATTITUDE

Worked for me. Maybe you also?

I'm 30lbs lighter than I was a year ago. The random pains and swellings in my joints went away. The fingers on my right hand had gotten so bad that I couldn't make a fist. No problem today. I'm even growing hair on my head in spots that haven't seen hair in 20 years. Not much, just enough to fool me into thinking there's more up there than what really is. The men will understand!!! But just the fact that any is growing back means something overall is improved.

That's about it folks. I feel good and am not even concerned about the MG coming back as long as I continue what I'm doing. My blood markers are still as high as they were a year ago but as my PCP just told me "we don't treat the numbers we treat the patient. And right now you don't neeed treatment".

I don't know what else to add at this time.
I'll check in every now and then in case someone has further questions but I won't be on every day. Good wishes to any who may try a similar approach. Remember - No one knows your body better than you do. Ya just gotta pay attention to it!

Rob D.

Oh and from mrsD and I must agree with her -

Quote:
The material on this site is for informational purposes only, and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider. Always consult your doctor before trying anything you read here.

Great post mrsD. I'll try to answer some of your questions concerning myself as they are all valid points and concerns. But first let me say that I don't expect or encourage anyone to blindly follow the info I have posted. These were my personal choices and I was very much aware of what could happen if I were wrong. In that it did work for me all I wish to do is pass it on to others in the hopes that another may benefit. EVERYONE needs to do their own thinking, research and decision making. I am in NO WAY recommending that anyone stop their current treatment and do what I did.


-No vaccines at all.

-Yes I had thyroid workups. No apparent problems.

-I neglected to mention in my earlier posts that I also went to an ENT to see if my problems could be from something else. After all his proddings, pokings, scopings,testings, etc., he found nothing wrong.


-I didn't/don't take any other drugs at all.



-Obviously I don't. But there is no disrepect intended. Put all the info out and let each individual decide for themself. There should never be any valid information witheld.

-I never saw that study. I do work in a prison. Don't see more anger, rage, aggression than what would be expected from men who are kept confined. AND forced to eat prison food. Yuck. What prison was that? And where did the excess manganese come from?



-I agree. Read, read, read.


-Again, it was my choice to do as I did. Fully aware that things may not work as planned. Keep in mind though that if I had to get my doctors OK about anything I wanted to try they wouldn't have let me do anything.


_I agree 100%. Talk to your doctors, then do what you want!:D Just kidding mrsD!:winky:

For kachina
 

Hi kachina-

As previously stated I take one iodoral tablet a day and about 15mg of manganese amino acid chelate a day. I never did "load up" on iodine as was done in some of the studies.

If you don't mind a side-topic, I was interested in your question about triggers. I am pretty sure that what triggered my MG (if that's what I have) was fighting off the swine flu. I was taking care of five kids who had it. I never got it, though I felt achy for a few days, like I was about to come down with it. I started with a bang--got weak and collapsed.

It occurs to me that if vaccines can trigger auto-immune diseases, then perhaps exposure to illnesses can do the same. It seems like my immune system over-reacted. Just a theory. I've mentioned it to my doctors but they haven't commented.

Abby

Vaccines create a "cytokine storm"... due to the adjuvants added to them. The virus content of the current vaccines is not strong enough it is thought to create that reaction.

All infectious illnesses create cytokines in the body. Cytokines are also called prostaglandins by some. These are inflammatory molecules released from cells. Some are signaling types, which activate the release and manufacture of antibodies. Some dilate blood vessels, and some are healing during trauma and injury.

We often get new posters with peripheral neuropathy following a viral illness of some kind. The most common form of this it appears to be an all over burning sensation in the skin. The chickenpox virus when it activates in the body causes neuropathic pain as well~shingles!

There are anti-inflammatory foods recognized now, and also an anti-inflammatory diet some people follow. The RSD forum uses diet sometimes. Using the nutritiondata.com link I gave, you can actually see the inflammatory index for many foods, right there on that website. It is generally thought that supplying the proper amounts of flax oil and fish oil in the diet will bring down inflammation to some extent. The consumption of Omega 6 fats, with no Omega 3 content, leads to inflammatory bodily responses too.

I have an EFA thread here:
http://neurotalk.psychcentral.com/showthread.php?t=6092

One has to be very careful about making inferences based on unusual sources. Some websites make claims that may not really be true.

For example, beets are also high in betaine which is a form of glycine. This serves as a methyl donor in methylation reactions in the body, and also acidifies the stomach. For people with the common malady --achlorhydria, betaine can restore the absorption of nutrients dependent on acid and also enhance protein digestion. Beets are not the highest manganese source. There are other vegetables that supply more per serving.

One study on prison inmates and manganese can be found here:
also:
http://www.ncbi.nlm.nih.gov/pubmed/10720710
and
http://www.ncbi.nlm.nih.gov/pubmed/10385897

Thanks for sharing your story.

Have you considered doing a Blog or creating a Yahoo forum in which you could store Files and Links that are easily accessibile?

Vitamins & Supplements
 

Rob,

I appreciate you sharing your story. It is good to hear these positive experiences from diet change and taking supplements.

Mrs. D,

I want to thank you for all the good information you share. It is all very inspirational and gives me much hope. I do wish my neuro shared your views. My neuro won't even discuss this kind of thing with me, tells me it doesn't matter what I eat, and then reinforces how important it is to keep taking the Mestinon regularly.


I am wondering if anyone has found or put together a list of specific diet changes and supplements that have been found helpful for MG. I have been making one change at a time and keeping records to see how I feel and identifying foods/vitamins that do help my MG (and also foods that make it worse). I have a list of things that help me.

I am considering adding flaxseed (for the Omega 3s) to my diet next, starting with supplement pills so I can take it regularly to see how it effects me. From all that I have read, this seems to be something that is missing from my diet and should help with MG.

I want to add that I have been taking Magnesium supplements (100 mg daily) and have reached a maximum benefit from them. I have been able to work three days a week instead of two and I have less MG symptoms. I have had more benefits from magnesium that from any other supplement or diet change I have made since I got MG.

For those of you taking supplements, what helps you the most?

Responses for kachina and DesertFlower
 

Hi folks-

Kachina - as far as a blog or group is concerned I would have absolutely no idea how to do such a thing. I probably wouldn't keep up with it/one anyhow. My lack of typing skills makes posting very time consuming and arduous (arduous to me anyway!:p). The info and links I have already posted should be way enough for others to start doing their own research and come to their own conclusions and decisions. Search engines and key words are your friends.
You see, I don't know EXACTLY what worked for me. Was it one thing? A combo? I don't know for sure. I post my experience here to let others know that it CAN be done, not that my way is THE way or the ONLY way. However I will always do my best to answer specific questions and to help in any way I can.


DesertFlower- I can not tell you how much I feel that what you are doing will eventually get you in control of the disease. Even though my approach was more of a "hell bent for leather" while you are more methodical, the same drivers are there. The willingness to experiment and take control of ones own health. You have already made progress with certain dietary changes and supplementation. Outstanding!!

I had asked all my docs if they knew of anyone who got better by doing nothing. They all said no. I told them I must be doing SOMETHING right then because I am getting better. You - DesertFlower - must be doing something right because you are getting better. Keep experimenting, be patient and hang in there.

Rob D.

Hi Rob
 

Good Morning,

I read with great interest your post. I have always tended towards natural healing/holistic health, so I am very intrigued by what you have learned. Any information you may want to share with me, I will greatly appreciate. I have not logged on in a long time, but was diagnosed with MG in August 07 and had a thymectomy in Jan 08. I have improved significantly, but of course still not "normal". Thanks for your help.

My email is*edit*
Thanks again,
Dorothy

You are too funny! You have been generously typing away and even graduated to a smiley face ... one of those flowery things you didn't have time or talent for :-)

My thought around the blog or yahoo group was thinking that it would actually save you time and energy as well as keep any Links or Folders & documents present whereas this thread may eventually get buried. But I understand why you may not want to undertake such a thing.

So I will take you up on your offer to answer another question ... Do you recall if you had any of the potential temporary side effects from taking Iodoral? Or if you experienced a temporary worsening of the MG symptoms when you first started taking it?

Hi kachina -

Good question. The iodine I started with originally is called Atomidine. It is in the form of iodine trichloride. This was recommended in the Cayce readings. Lugols solution was also available at the time but I don't know right offhand if it was ever mentioned in any readings. The Atomidine is supposed to be a more easily assimilated form of iodine. I used it for about two months before I switched over to Iodoral. My main reason for switching was twofold.

One - Most of the readings were an on/off cycle of Atomidine. That is, take it for a while, stop for a while, take again. The amount of Atomidine would vary depending on what it was being used for. The only reading for MG had that kind of a cycle. The man was to use it for 4-6 months on/off (with other treatments he was to follow) and then come back for a follow up reading.
I was using it every day without taking a break from it. There seems to be very little useful information in the use of iodine trichloride and I never found any studies concerning its use either long or short term. Other than the Cayce readings that is. I had very positive results within maybe two days of starting the Atomidine. I felt better about myself, I slept better (for a while anyway) and sometime later (1-2 months) I noticed my nails were stronger. Didn't know if it was a good idea to continue using it as I was, but as far as I was concerned it was great stuff. No adverse effects or signs associated with excessive iodine intake.

Two - Lugols solution and Iodoral are the same compound but in different forms. Lugols has been around a long time and used in many studies - long and short term. Iodoral has also been used in long and short term studies and in much larger dosages than even I was wanting to take. The tone of your question implies that you have read these studies/trials. So...info available on long term use of Iodoral and Lugols, essentially nothing on iodine trichloride - so I switched.

So......to answer your question - which by now you probably figured I was never going to do - the ONLY negative was that for maybe 3 days or so after I switched to Iodoral I didn't quite feel the same. Not bad, mind you, but I had been making very slow but steady improvement all this time, and when I switched things just seemed to stagnate for 3 days or so. Nothing got worse but progress just seemed to stop for a few days. I cannot say for sure that this had to do with the switchover because as you know, this disease has its gooder days and its badder days. But since it happened at the same time I felt it should be mentioned. After that time I started slowly improving again and here I am. Ta Da!:partytime2:

NO adverse effects of ANY kind from either form of iodine. And here's the kicker. I am allergic to shellfish. Used to have no problem at all with any form of shellfish. All of a sudden about ten years ago my body decided that hives and swellings were the proper response to ingesting said food. After the second time I gave it up for good. So what are we told? Allergic to shellfish = allergic to iodine. Personally I think it's a protein in the shellfish that causes the problem but .... do I know for sure? Nope.

So believe me - I was looking for ANYTHING that would indicate ANY kind of negative reaction to iodine. I had no problem of any kind with either form to this day.

Been taking it for ten+ months and my thyroid profile done at end of May came back just fine. My wife has been taking it for almost as long and her tests came back fine also.

So there it is there. No side effects, no worsening.
Goodness, look at all 'dem words. No wonder my fingers hurt and my eyes are crossed.

I shoulda just said no.:Doh:

Rob D.

Your willingness to share the details is appreciated!

Could you clarify a little here? Did you have a Myasthenia panel in the beginning and then again after being symptom free for a period of time? Were there any changes in the results?

If you prefer to respond to my questions off list I created this temporary email: *edit* (use the correct email format of course, I altered it in order to reduce spam)

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Hi Kachina-

First panel was in July of 2009. I have been symptom free since December of 2009. My second panel was done at the end of May 2010. The results were essentially the same. So the little critters are still floating around but not affecting me. That's why I said I don't consider myself cured.

For all I know I may have had high numbers most or all my life, and that some change allowed them to run amok for a while. It's not as if this panel is done as part of any standard blood testing. There may be all kinds of folks out there with high numbers and doing just fine. Since not all MG sufferers are serum positive it may be entirely possible that not all serum positives are going to get the disease.

I have gout. I have very high blood levels of uric acid. I no longer have gout attacks even though my uric acid level is always high. A little bit of magnesium every day keeps me symptom free. Point is that a high uric level does not guarantee suffering. My PCP tells me that there are gout sufferers who have blood uric acid levels way down in the normal range. There is not always a direct correlation. Might be the same with MG and possibly other diseases.

Besides, he told me "We don't treat the numbers, we treat the patient. And right now you don't need any treatment".

Kachina!!!! --You did it to me again! :rolleyes:I could have answered your two questions in the following manner-

Ques#1 -- Yes
Ques#2 -- No

You sure are sneaky in how you make me peck all those words every time:wink:

Rob D

During your research did you find the information about DMSO being used to reduce abnormal antibodies present in MG?