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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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06-08-2010, 09:50 AM | #21 | ||
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Junior Member
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If you will, what doses of manganese and iodine (as Iodoral) have you taken?
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06-08-2010, 10:35 AM | #22 | |||
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Wisest Elder Ever
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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. Quote:
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All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei ************************************ . Weezie looking at petunias 8.25.2017 **************************** These forums are for mutual support and information sharing only. The forums are 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.
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"Thanks for this!" says: |
06-08-2010, 11:58 AM | #23 | ||
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Junior Member
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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.
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Please forgive what may seem as short or terse tones in either my questions or responses. I two finger type so I tend to keep things short and to the point. Takes WAY too long to type flowery phrases. No offense EVER, EVER intended. Last edited by Aries51; 06-08-2010 at 12:52 PM. |
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"Thanks for this!" says: | DesertFlower (06-09-2010) |
06-08-2010, 12:38 PM | #24 | |||||||||
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Junior Member
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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.
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-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. Quote:
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-I agree. Read, read, read. Quote:
-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. Quote:
_I agree 100%. Talk to your doctors, then do what you want! Just kidding mrsD!
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Please forgive what may seem as short or terse tones in either my questions or responses. I two finger type so I tend to keep things short and to the point. Takes WAY too long to type flowery phrases. No offense EVER, EVER intended. Last edited by Chemar; 06-08-2010 at 12:55 PM. Reason: adding quote tags to distinguish who said what and prevent confusion |
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06-08-2010, 12:44 PM | #25 | ||
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Junior Member
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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.
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Please forgive what may seem as short or terse tones in either my questions or responses. I two finger type so I tend to keep things short and to the point. Takes WAY too long to type flowery phrases. No offense EVER, EVER intended. |
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06-08-2010, 05:06 PM | #26 | ||
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Senior Member
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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 |
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06-09-2010, 04:27 AM | #27 | |||
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Wisest Elder Ever
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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
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All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei ************************************ . Weezie looking at petunias 8.25.2017 **************************** These forums are for mutual support and information sharing only. The forums are 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.
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"Thanks for this!" says: | DesertFlower (06-09-2010) |
06-09-2010, 06:42 AM | #28 | |||
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Wisest Elder Ever
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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: Quote:
http://www.ncbi.nlm.nih.gov/pubmed/10720710 and http://www.ncbi.nlm.nih.gov/pubmed/10385897
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All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei ************************************ . Weezie looking at petunias 8.25.2017 **************************** These forums are for mutual support and information sharing only. The forums are 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.
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06-10-2010, 10:04 AM | #29 | ||
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Junior Member
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Quote:
Have you considered doing a Blog or creating a Yahoo forum in which you could store Files and Links that are easily accessibile? |
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06-11-2010, 01:08 PM | #30 | |||
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Member
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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?
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