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Thread: your experience? trying to gain a better understanding.

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  1. #11
    Join Date
    Dec 2012
    los angeles
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    Quote Originally Posted by SleepyInSeattle View Post
    Hmmm...well, if your doc recommends it, I guess it's worth a try....I am not really sure what it's supposed to do or what's in it. Generally, people with Lupus, Sjogren's, etc are cautioned to STAY AWAY from anything that is designed to boost the immune system (including garlic, mushrooms, Chinese herbs, echinacea, astrugalis, etc) because the whole point of the diseases is that our immune systems are TOO active already.

    Check out this website:
    Or this one:

    Both are good resources in general, and worth exploring the websites - the Lupus Foundation, and Johns Hopkins Lupus Center. They are not some weird, fringe organizations, and tend to present well-researched opinions on things.

    But of course the main thing is to discuss any supplements, diet changes, etc with your doctor and to understand that none of them replace good medical care.

    On a personal note - oddly enough, since I started taking Methotrexate (which supposedly suppresses the immune system), I have been healthier than ever. I was always one of those people who caught EVERYTHING, and had it worse than most anybody. So I was really worried about being on the Mtx. But the absolute opposite thing happened....i have not been sick ONCE - even when taking care of my daughter and husband through several viruses! It is really weird. Then, when I had to go off the Mtx for a couple weeks (you can't take it when you're on certain antibiotics), I got sick! So I am kind of convinced that it was my hyperactive immune system making me sick for all those years, not the viruses. Maybe the viruses TRIGGERED my immune system, but then it was the Lupus making me miserable. I don't really know, I am just theorizing - but it's been such a strange experience, being "the HEALTHY one" instead of "the sick one" this last year. All while on immuno-suppressants!

    So the bottom line is to read up, ask questions, and listen to your body. I wish somebody could give us definitive answers on this stuff, but the truth is that everybody's experience is different, and so nobody can.

    We do travel a lot, and I just try to get extra rest, listen to my body, have really good hygiene (wash hands a lot, etc), eat very healthy foods, and drink a lot of water. Basically what anybody does to stay healthy - I am just a bit more adamant about it. So far, it has worked pretty well for me.
    interesting. she told me to do it, and honestly i love and trust this woman that if she told me that if i lit myself on fire it helped, i'd do it. she told me just to take it before i get on the plane, and when i get on the plane. i'll keep you posted with how it goes. thanks for the knowledge on what things to avoid. lord knows my mom will likely encourage me to take echinacea at some point. do you eat garlic at all, or avoid it all together?

    thank you for those websites. i'll definitely poke around in them.

    it's awesome that the Methotrexate is keeping you un-sick. i keep joking that i catch everything that anyone within ten miles of me has (but really, i feel like i do). hopefully after a few months on the plaquenil, i find it works, or find something else to help combat my symptoms. the hardest for me is the fatigue. i've been out of the office for about 5 weeks now due to this and all of the illnesses that it has brought... it's really difficult for me to be out of the office (plus, i work in a really fast-paced industry, so being out and trying to keep up makes me feel so incapable).

    again, i can't thank you enough for taking the time to respond to me. it's so calming to understand that people are going through what i'm going to, because this is so brand new for me.

    fortunately this trip is just going back "home" (where i'm from) so that i can rest, hang out with my dogs, and let my mom take care of me for a few days. hopefully the travel goes easy. i'll be washing my hands like a crazy person. i'll be able to rest as much as needed when i'm there, and when i get back i still have two weeks until next year's work year starts. fingers crossed that this doesn't set me back.

    i ate really healthy before i started getting exhausted all of the time... trying to whip myself back in to it. i know eating poorly isn't helping anything.

  2. The Following User Says Thank You to smw For This Useful Post:

    SleepyInSeattle (12-16-2012)

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