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!). 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.

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!

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.

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?

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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! 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

Rob D

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