Myasthenia Gravis Support Group

Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...

1,709 Members
7,414 Posts
0 Online
Muscles & Bones
/ Myasthenia Gravis Support Group

immune system?

MaureenNY
MaureenNY
Correct me if I am wrong: As we all do, I receive plenty of well meaning advice, most recently I got a cold, a bad cold which everyone and their brother feels the need to comment. Anyways, they are all coming up with ways to "boost my immune system"... with MG... that same immune system is trying to kill me so isnt that like.. "feeding the army thats fighting me?"
txkiki53
txkiki53
Yes, I also get the same advice
deleted_user
deleted_user
I get that too, along with the suggestion of different immune boosting remedies.......... to those I love, I remind them of my condition... to those in the community, I typically tell them thank you (and mean it - they care)...... and move on. Most of the time though no one knows about it but my immediate family.

my biggest beef is when I have to cancel something and call to tell the person and get "oh, it's JUST a cold"..... they have no idea .... am I'm glad.... wouldn't wish this on my worst enemy!
bweeds
bweeds
The road to the ICU is paved with good intentions, between those that want to "boost our immune systems" and the docs that want to give us powerful antibiotics--the viruses and drug resistant bacteria must love us!! We can smile at friends and family, but we need to educate our docs. b.
deleted_user
deleted_user
I personally dont take any supplements at all...I have stomache issues so cant, but wouldnt if I could.....I just try to eat the best that I can, which isnt always that good, try to exercise a bit, wash my hands about 30 times a day, and stay away as much as possible from people that are ill etc..of course thats impossible there are germs everywhere but do best I can....There are hundreds of things to try but so far I havent tried any but thats just me....Everything works different for everyone so you need to do whats best for YOU....
SeattleWriter
SeattleWriter
"The road to the ICU is paved with good intentions": this should be on a T-shirt for MGers. :)

I've been educating friends and family members about it this way when they tell me to take something boost immunity: "in my case, my immune system attacks my body. If I boost my immune system, it attacks my body more." Sometimes, this sinks in, sometimes it doesn't!
flutebell
flutebell
I have Sjogren's as well and learned at a National Patient Conference that we shouldn't take supplements that boost our immune system - that includes echineacea, ginseng, melatonin and some people even say garlic.

I don't take the first three but do use garlic in small amounts. I haven't had a cold or antibiotics for over a year. I wash my hands a lot, use hand cleaner when out and don't shake hands in social situations. When co-workers come in sick, I use wipes to clean off the door handles, phones and photocopier. I use paper towels to open doors in hallways.

I'm just back from a two week trip to Europe with air flights and visits to dozens of places crowded with people. This is the only time I'm thankful for an over-active immune system.

Flutebell