[djvallejo]

Curious if anyone has any stories about treatment of Myasthenia Gravis with Vitamins, Nutrients, Herbs and Supplements. Please help as I am trying to stay away from taking Prednisone. On Mestinon currently

[Pat 110]

Hey djvallejo,

Welcome to the forum! I've had MG for going on 11 years and only take mestinon. Had serious side effects from other meds and opted not to take pred. I take a multi vitimin and additional calcium plus D, but sorry I don't know of any natural therepies to treat MG. Hope you are having a good day. Take care.

Hugs,
Pat

[Joanmarie63]

Welcome to our little site. We all feel like family here, at least I know I feel that way. As for herbal remedies, I use meditation, or mind relaxation as I can't take any meds, not even vitamins. So rest and mental relaxation is the way I deal with it, but remember even those treatments you will still have boughts of anger and know that when you do we will listen

[djvallejo]

I too am on Mestinon which helps some and have also elected not to take pred (unless it gets real bad) I am checking on something called cellcept but on the Natural Healing bandwagon. Found this interesting article you may want to read

Couldn't post the the link in this response but you can google - Walter Last and Myasthenia and it will come up titled - MYASTHENIA GRAVIS - A Holistic Therapy - By Walter Last

Has the vitamins helped you with symptons? I read manganese (not magnesium) is a good one. Check out the article it details all but no info on dosages Let me know what you think.

[erinhermes]

What wonderful info!

I for one absolutely HAD to take pred as I nearly died from MG, but would love to be able to get off of it ASAP, since I have had tons of side effects v- but am still grateful that it DID save me - I spent 8 days in the ICU due to MG!

It was truly terrifying!

I am 35, but was dx'ed right b/4 my 34th bday - by that time, I was too weak to walk, talk, swallow, etc, so when I was finally admitted I was given tons of IV IG, steroids, mestinon, and fluids....

I would love to hear more of your dtory when you have the time and energy!

Again, WELCOME! THere are so many amazing, wonderful, brilliant, and above all empathetic people in this site.

Feel free to vent - we;ve ALL been there/done that!

Erin

Originally Posted by djvallejo

Curious if anyone has any stories about treatment of Myasthenia Gravis with Vitamins, Nutrients, Herbs and Supplements. Please help as I am trying to stay away from taking Prednisone. On Mestinon currently

[djvallejo]

Did the vitamins help? Do you notice an difference if you don't take?

[Pat 110]

Originally Posted by djvallejo

I too am on Mestinon which helps some and have also elected not to take pred (unless it gets real bad) I am checking on something called cellcept but on the Natural Healing bandwagon. Found this interesting article you may want to read

Couldn't post the the link in this response but you can google - Walter Last and Myasthenia and it will come up titled - MYASTHENIA GRAVIS - A Holistic Therapy - By Walter Last

Has the vitamins helped you with symptons? I read manganese (not magnesium) is a good one. Check out the article it details all but no info on dosages Let me know what you think.

Thanks for the address. My eyes aren't too good today so I only made it half way through the article, but it sure is interesting. It makes me wonder why if just taking a selection of supplements put people in remission more doctors wouldn't try that route first. I'm sure the drug companies would be opposed to it for obvious reasons. Also, what doctors fear most after a thymectomy is that some may have been missed, but he states that would be a good thing. I'm looking forward to finishing it tomorrow. As far as me feeling better by taking a multi vitamin, I can't say for sure. I started taking them about a year after my thymectomy in 02 and I saw small improvements over the next 3 years along with taking mestinon (when I'm able to tolorate the side effects) so I'm not sure how much they help. I know I don't get all that I need from food, so I think it's a good alternative and they agree with me. As far as the Cellcept, a lot of people here take it and can answer any questions you may have. Good luck and let me know how you make out with your appt. Thanks again. Take care.

Hugs,
Pat

[AnnieB3]

Djvallejo, Hi. I can't give you any medical advice, only your doctor can do that.

I can tell you that I do everything I can to keep my body and immune system "settled down" and happy. I stay out of the sun/heat, I sleep as well as I can, eat whole foods, take sensible supplements like vitamin D, keep stress out of my life as much as possible, etc. What Mr. Last is talking about is not really new. It's important to have a healthy GI tract, including enough stomach acid, good probiotics, etc. Did you know that steak takes a very long time to digest and sits in the GI tract and peutrifies? I know, not a lovely word.

Prednisone is a difficult choice for anyone to make. The long term complications of it can be numerous and impact your health in adverse ways you may not even know about yet. I have known patients with lupus who have had no choice but to have it.

Anyone who tells you that "alternative medicine" is a substitute for "traditional medicine" may be trying to sell you something. It's when you use sensible bits of both worlds, in consult with your doctors, that they can have the best impact on your life.

And even foods can be bad for certain people. Too much potassium is not good and some people need to take more than average. I think it's best to talk to your doctors about what you find out and come to some kind of sensible solution that fits your individual needs.

I hope you can figure out what is right for you and feel as good as possible.

Annie

[erinhermes]

Hello! I am on tons of supplements right now and think the world of them! I take 1800 mg of calcium w/with vit d, iron, prenatal vitamins, probiotics - to keep all of the nasty little bugs out of my system and they make me feel much better!

Hope this helps!
Erin

Originally Posted by djvallejo

Did the vitamins help? Do you notice an difference if you don't take?

[djvallejo]

Thanks Pat! Yes a good balance of both is the path I am on. Just don;t want to end up like my Mom with over 20 different scripts. Main focus is on food and drink right now. Eliminated all artifical sweetners (mainly dient coke and sweet and low in cofee). Eating more vegetables, etc and cutting down on red meat big time. Plus my chewing strength stinks now so steaks are pretty much out. Will let you know what Homeopath tells me and yes I am staying away from the snake oil sales people.