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Originally Posted by Texashaman
How about milk thistle, I read that it has been used for decades for myasthenia gravis as wel as cerosis of the liver but the neuro dr. Did not want dad taking it, mostly cause they don't have the medical history of complication of other drugs, the neuro dr. Said to check with the liver specialist but that dr didn't hav any idea what I was talking about, therefore he won't allow it! He has Ben doing vey well the last 3 months besides the normal diarea with the mestinon. He has cut his prednisone from 40 mg To 10 mg , small prescription of cell cept twice a day, and mestinon 60 mg 3 times a day, I want him to cut out his mid day mestinon to help gastric problems , it doesn't seem to charge him up as most or people, recently he swallows breaths , holds his head up. I've seen it for this last year. 4 Icu stays. I watchd it go thru his whole body, even arms and legs, Couldn't walk, etc. now after much water retention problems he's on a cane, getting around pretty well, life is kinda back to normal, I'm lost, I told the dr. I thought it burnt out, she said it not the flu doesn't go away, They were going to have him do plasm exchange every 3 weeks, yet now it's been almost 4 months, thanks fo listening!
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I am glad to hear your dad is doing better. Your doctor is right, this is something that never goes away, even those with MG who experience remission often they have the MG return later on, the antibodies are forever with us. Mestinon is rough on my digestive system, too...I have to stay near a toilet for hours after taking it.
I tried Milk Thistle and can't really tell if it helped but it definitely didn't have any side effects and it is a pleasant tasting drink. I tried it in small quantities, about two cups per week. Milk Thistle is not a tea that should be used daily for long periods of time so be careful with it if you or your dad decide to drink it. Milk Thistle is supposed to be good for your liver, but I am not a doctor so please don't take my word for it. I know I will continue drinking Miilk Thistle tea on occasion after I finish this experiment with Raspberry leaves in February.
I have tried many (about 10) herbal teas in an attempt to reduce my MG symptoms, because herbs and plants is something I am experienced with and feel safe trying. At first I was trying mild herbs that are supposed to help the immune system. I found that some of them helped a little, and they helped mostly with my allergies and not necessarily the MG.
I have a new theory concerning herbs and MG. I think rather than trying to help the immune system, I need to strengthen my adrenals, which is why I am experimenting with Raspberry leaf tea. It is supposed to help heal the adrenal, plus it is full of vitamins. Raspberry Leaf tea is considered safe to drink every day, as safe as eating green leafy vegetables, so I feel good drinking a lot of it to see if it helps. I really think it is.
I have read that one function of the adrenal glands is to regulate and inhibit the immune response (I need to find those articles again because they made so much sense concerning my symptoms, MG and others). I think this makes more sense that suppressing the immune system as a treatment for MG, at least my type of MG and for herbal treatments, but of course I am not a doctor only a person who has reached the limit of healing within the medical system and am willing to experiment on myself with herbs, foods and vitamins that are considered relatively safe. I definitely don't recommend others doing this without researching first or working with a qualified herbalist and always communicating with your doctor.
Thanks for responding, I hope your dad keeps improving. I remember how it feels to not be able to walk, eat, or just about everything. I suppose I am lucky MG only has the slightest effect on my breathing and swallowing. Hopefully your dad has stabilized. I wish both of you the best.
