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Posts (15)

Aug 15, 2017 · Autoimmune Diseases and Fatigue in Autoimmune Diseases

Me too. I would like to know where to buy these supplements.

Aug 15, 2017 · Autoimmune Diseases and Fatigue in Autoimmune Diseases

I was able to turn in a written request to Mayo to hopefully get in and see someone, but I was turned down. I worked my first full week teaching last week, and I have been in bed all weekend exhausted. My bruising, lack of appetite, and joint pains have been so much worse. I ended up catching a virus and missing my first day of work. That was such a huge blow for me, I am sitting here this morning, absolutely heartbroken that I have been resting now for four straight days and still feel exhausted and no better than I did Friday when I came home.
My friend says I should have my doctor give Mayo a call, but I don’t believe I can go there. I am just trying to put one foot in front of the other. It seems like each day I have started working full-time, I must drink several energy drinks and take four Rhodiola’s a day to keep going. This helps till I stop them on the weeken and crash.
I have been blessed with such a wonderful group of students and co-workers.
I have noticed a a few new things that haven’t happened before. My left ear has been killing me this weekend, like an earache, but it isn’t one.
My left side itches quite a lot at out of the blue times. My left leg will twitch when I’m resting. Does this make any sense to anyone?

Jul 31, 2017 · Treatment for chronic epstein barr in Infectious Diseases

@airsleeper please know you are in my prayers!

Jul 31, 2017 · Treatment for chronic epstein barr in Infectious Diseases

@kanaazpereira Thank you so much for all the information. I thought I had responded back to you specifically. Yes, I am on a high protein, actually, almost all protein diet at the moment. As I prepare to officially go back to work tomorrow, I have had so many exhaustive relapses these last three weeks. I am a teacher and have been placed at a new school. Trying to get my room ready has been such a chore. I see my surgeon in two days to see if i have some sort of complication from my abdominal wall reconstruction surgery that was done January 31. Tomorrow officially starts my school year, and I don’t feel that I can tell anyone about what is going on because I have learned from past experiences that 99.9% of all people – family, best friends, and Christians eventually just look at you as lazy or deranged because pushing through is not something I can do most of the time. This is especially true for me as I get older and get out of a schedule, or over due things physically or emotionally. My throat is still sore along with headaches, neck aches, and back aches. Today, after working going through my classroom books and dust, even my eyelashes ache. I got up and took my shower to head to school and had to just lie down after bathing. This is something new along with some other symptoms my husband and i have noticed the last month or so. My vision and light sensitivity is changing again. I just got my new prescription in April, and I cannot see well out of my glasses except to drive. I have also noticed a twitching in my left leg when sitting, and my bladder IC is driving me crazy regardless of diet, meds, or rest. I did fill out an appointment form, and right now I am praying I get seen. I have also been researching different blood and genetic testing possibilities to find answers. Hopeless is set in. I am so discouraged because I had so hoped the set back would be better if I rested more and ate better. But, if anything is true, I am worse all over. I hate to be a Debbie Downer, but I know my husband, children and my dad all need me. And, I want my life back. If I can’t live my life then what am I here for? You know what I mean?

Jul 24, 2017 · Autoimmune Diseases and Fatigue in Autoimmune Diseases

I have been out of town and unavailable to post. I am rereading everyone’s posts to keep up and hopefully continue to educate myself as well as share anything that could help someone.
Has anyone added to or joined the group that has autoimmune issues before/after Roux N Y gastric bypass or an abdominal wall reconstruction with mesh?

Jul 17, 2017 · Autoimmune Diseases and Fatigue in Autoimmune Diseases

I don’t have anything to add to this because it sounds like you’re much further in this journey that I am. However, someone above commented about good sleep, and I do notice that when I can be on a regular schedule as much as possible with bedtime, waking, showering, what I eat, time of day I take meds, etc, the better I feel.
I teach, so when we are on breaks I can get really out of whack and usually my EBV will spike in both August and May. Could be something in that, who knows. I wish I had something to share that would be new for you to try. Keeping you and all of us in my prayers. This has been the best blessing for me in 20 years. Finding others that are trying to find the answers.

Jul 17, 2017 · Autoimmune Diseases and Fatigue in Autoimmune Diseases

Thank you for all of this great new information. Some of this I have tried or heard about, but you have explained this so that I understand it.
Also, understanding that I am ultimately in charge of my healthcare and know I cannot rely on anyone, including doctors to know what is best for me.
I do very well with a schedule. I have found that as a teacher, it is much better for me to keep my schedule of bedtime, physical activity, and eating habits the same or close, when I can.

Jul 17, 2017 · Treatment for chronic epstein barr in Infectious Diseases

I cannot take steroids by mouth due to gastric bypass nor by shot any longer. I was getting a steroid shot about every six weeks or so when I finally had a severe reaction to it. I wasn’t placed on oral steroids during and for three months after each hospitalization in my 20’s due to the extreme spleen and liver swelling. I actually lost about 50 pounds both times due to my stomach being pushed closed by my spleen.