Hi. I just today, had a blood test for EBS come back positive. I've been so tired for about 3 weeks now, that I can barely function. I cannot think clearly, sleep sooooooo much and never feel rested, I've been sick with Bronchitis 3 times in the past year. I was so healthy before the past year or so, that this is really making me depressed. I have to go see a specialist for anti-viral drugs and I'm scared.
Does anyone here have it, and how do we live with this?? Any advise, I thank you for in advance!
I too received a positive result on EBS--Out of curiousity what was your number? Mine was 6.56 on a
range of 1.10 and greater being positive.
I am seeing my doctor on Tuesday--will be interesting to see what his approach is.
Well, he told me over the phone, and refered me to an infectious disease doctor. I go on Monday. He faxed my results over there. He is my GYN, so he said he doesnt know much about it. I had him do full blood work and he tested for that one, because I have been so sick and tired. I'll let you know when I go to that appointment though.
He did say it was showing all four parts for the antibody and it was high I guess. I'll let you know the numbers.
Thank you so much for replying. I have been searching for 2 years trying to determine why I have felt so horrible. It was actually a psychiatrist ( I had one visit with him because I have been so depressed about this illness)that ordered this test.
Fortunately I am scheduled to see this doctor in a week--he probably will refer me to an infectious disease doctor too. Please let me know what your doctor says on Monday--I am desperate for some concrete answers. Again, thank you for responding--you have given me hope of getting an answer. Amy
Hi, I was diagnosed with mono 2 1/2 weeks ago after feeling bad for 3 months. I just wouldn't give up and being 54 years old, I thought I was just getting older. Then one day I couldn't stand up. Husband took me to the emergency room and my blood sugar was 43 and I tested positive for mono! Couldn't believe it! Doctor told me bed rest for 4 weeks. Pretty hard to do with a big farm, husband, two dogs and a big garden getting ready. (Grown kids are helping with garden). But talk about depressed! I would be interested to know if you have had any of the symptoms I have. ...Periods of feeling half way normal, then back to burning up all over, especially hands and legs feel like they are on fire. Hands are sooo sore. I'm starting to get a little (very little energy back), but I still feel terrible! I read alot of stuff on the web about mono, but no one really describes all their symptoms. I had a couple of weeks of my blood sugar fluctuating really badly. I've been eating more often. (You know that mono makes you have zero appetite.) Blood sugar is stabilized now, then I had a bout with blood pressure fluctuating. I was hoarse for a couple of months before I was actually diagnosed. Throat was actually sore (more dried out than anything else) for only a few days. Checked for step (negative). Then I could actually feel it moving from my throat down into my chest until I had a terrible feeling right in the center of my chest of being scared and like my heart was going to jump out of my chest, would beat so hard at night that I couldn't rest. Then came the swollen spleen that hurt in the left side of my chest. From there it seemed to go into my intestines and bladder. Was having to uriniate 15 or 15 times a day. This is lasting so long and my doctors say there is no treatment for it other than bed rest and fluids. Now I'm beginning to wonder if I have something else in addition to mono. Would sure help to talk to someone else who has these symptoms. I feel like my blood veins are inflamed! Our daughter had this back in the 80's and I didn't get it! Now here I am 54 and have it! Any help from someone who has this awful stuff would sure help. I feel so alone. Some of my friends have seemed to forsake me too. Guess if you're not on top of everything they think you're nothing. Really find out who your real friends are when something like this happens. And I've decided that my REAL friends are my family and my dogs! Donna
Yes it is terrible. I have had unexplained symptoms for 20 years--finally, it became so bad that someone had to take notice. I first had mono in my 20's. I always worked too hard and burned the candle at both ends. I am 46 now. My symptoms are:
nasal swelling and congestion
sensitivity to light and noise
Please take care of yourself now--get plenty of rest
and take vitamins so your body heals. I think my problem has been I have never allowed myself to heal properly--I just kept going. Mono can be successfully treated with no long term problems if treated properly now. Take vitamins that will boost your immune system--Vit C, B, I hope this helps. Amy
Once you get over the actual sickness (the mono symptoms), it WILL get better. I was diagnosed at 15 and was really sick off and on for two years, then I finally started feeling better. I am 31 now, and I can tell you that you will ALWAYS need a lot more rest than most people. You tire easily and if you don't get a lot of rest, you'll end up sick with a cold or sore throat or something. My signal is swollen glands, if I don't get enough rest then my glands will swell to warn me to rest. But if you get enough rest, life can be pretty much normal. It WILL get better. Right now it's frustrating because you have the mono and I remember having those 102 fevers that wouldn't break and your entire body just HURTS and you can't even sleep on your stomach because your liver and spleen are so swollen they feel like they are going to burst. Just get a lot of rest, take care of yourself, and remember there is a light at the end of the tunnel. But you DO need to take care of yourself for the rest of your life, that EB will lie dormant and cause you to fatigue easily. Best wishes to a healthy recovery!
I can relate to VegasGirl. I had mono when I was 15 and was sick for 6 months and was told I'd have EBV for life. I found for the next couple of years I caught anything that was going aroung..mainly the flu. Vitamin C & B really helped build up my immune system & fight the fatigue. I am now 25 and when my glands swell up I take extra precautions (Echinacea)..but it has become less of a problem as time passes.
I sympathize with all of you. I was diagnosed with EBV when I was 21. At that time I was working for a doctor and we had several patients with it. I am now 32 and still have the chronic fatigue. Stress does make it flair up. Luckily, my last titer showed that it was dormant.
I am very sorry for your bad luck. I have had mono three times at ages 10,17,21. It is very trying! My advise is rest! No working two jobs and going to night school! Do not try to be a hero it will only make you sicker longer and then you will be weakened for years...trust me! Do not drink and do not smoke pot and do not smoke cigs! This is important please do not unneccesarily torture yourself. I'm sorry if I preach, I just know from experience, and try to keep others from having the lingering effects I do. Good luck!
Mine is dormant, but I still get sick and tired easily. Bumpkin, you had mono THREE times? WOW! My doctor said it's a miracle to get it more than twice. You must have some SERIOUS Epstein Barr going on. Hope everyone stays healthy! Always get plenty of rest!! Isn't it weird how your glands swell up as a warning that you're wearing yourself out and are going to get sick? That happens to me all the time STILL!
Wow.. For a while I thought I was the only one that had lasting symptoms of mono. I first got mono when I was 19 years old, the end of my freshman year of college. I had it really bad, lost a lot of weight, but never really took care of myself. I still worked forty hours a week and went about my summer as though nothing was wrong. I even ended up in the emergency room at one point because my left side hurt so bad I thought my spleen had ruptured. But when I found out it was only a stomach virus, I went into work anyhow! Well around mid-August I started feeling a little better and by the time I was back at school felt almost normal. Then I had to have my wisdom teeth removed (oh joy of joys!) and it made my mono relapse. I was sick with that round for about 2 months, then got better.. but always had a cold or sinus infection or something. Then this past summer I had the same symptoms.. always tired, weight loss, left side really hurt. When I went to the doctor's they tested me but it came back negative for mono (which I'm not totally sold on.. I know what my body feels like when it has mono, and that's what it felt like) Around the time I went back to school I started feeling better. But I still find that I'm always sick and recently had a very scary 8-week period where I kept fainting (About 25 times in the eight weeks.. and in 4 different classes! Great way to meet people! LOL) Sometimes I feel if I get a little run down or when I'm sick, I feel like I have a mini-relapse.. even if for a few days. I got a 24-hour stomach virus on Friday, and still have it.. not hungry at all and my left side hurts.. I'm hoping that it's not another relapse of mono, cuz that'd suck! So my advice to anyone that has mono right now.. take care of yourself, get rest, listen to your doctor, or else you'll be fighting with this for life!
After I had mono when I was 15 I got the EBS positive also. I also have a hypo thyroid and low blood pressure that also causes tiredness. Make sure all you got is the EBS. It may open up other problems, you never knew you had.Don't let any doctor tell you that your just depressed. Its a crock. Your depressed because your not healthy. Doctors help the drug companys. So they will say anything, to put you on a drug for the rest of your life.I wish I can tell you what to eat or do to make you better. I would do the same thing. But never, let a doctor put you on meds for being depressed. Theres lots of truth in it when people say that," god put all the right foods and hurbs in this world for us to use." Keep this in mind.