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
I sure will. I know how you are feeling. At the same time all this is going on, my boyfriend decides to leave me. I know stress makes it worse, so stay unstressed if you can. (ha,thats funny!)
Ill keep you informed. If you need someone to talk to, just email me! =)
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:
dizziness
difficulty walking
fatigue
confusion
hormonal problems
nasal swelling and congestion
sensitivity to light and noise
heat sensitivity
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.
I was diagnosed with EBV when I was 21, I am now 32 and every year my blood test results in chronic EBV. I have no idea what that means, but I am sure it is not good. I am also one of those people who needs a lot of rest. It is not easy, especially with a little three year old. I have good days and bad days. My worst days are when I am getting ready to menstuate, I really have a hard time having a normal and active life. I was kickboxing for a while, and it really helped out. I just need to get motivated to exercise again. I do take prenatal vitamins and they are wonderful. I am trying to get pregnant again with no success. I don't know if is my Asthma meds. or the EBV? It has been about six months of trying, and I am beginning to think it is both. Those of you with EBV, it is one of those diseases that most Dr.'s do not recognize. We all just need to stay as healthy as possible, and try to get plenty of rest.
dear twizliz,
I am new at this... but I just finished reading your last reply on the message board, and I noticed that you complained about your left side hurting. I just turned 24 in October and have been married less than two years. Since my Junior year in college, I have suffered from extreme fatigue. Two weeks ago I went ahead and had a blood test done (ebv), which came back negative. But my doctor said that the blood work showed that I did have an infection in the past. For the past four weeks I have been having terrible pain on the left side. Since I have been diagnosed with endometriosis and interstitial cystitis.. everyone just assumes that the pain is a result of one or both conditions. I didn't even know that I had mono when I did... I sort of just "chalked it up to" excessive tiredness due to college and my hectic, stressful schedule. I figured it would get better after graduation, but it only continued to get worse. After I was married, I could barely get out of bed... I was soooo tired all the time... I even became very depressed and was prescribed anti-depressants. These only served to make me feel worse! I had NO appetite... no desire for my husband... I just wanted to sleep forever. It was a terrible time for me... and I feel like I am slipping back into that same rut!! For awhile I felt really good... but now I am sooo tired again, and my left side is KILLING me, plus I feel nauseated all the time. My last ultrasound showed that I have two physicological ovarian cysts... (sigh) I thought they might be the cause of my problems... but my gyn told me "not to get hung up on that idea". He is referring me to a special chronic pelvic pain clinic in Chapel Hill. btw, do you ever experience any leg pain?? My left side from the hip down is also bothering me as of late!
Wow,
Hi all fellow sufferers of ebv, and chronic fatigue immunne defiency syndrome ( now it is politcally correct to call it cfids).
The info I can share may or may not be helpful, but hopefully it will.
First of all, I am stunned to see that about the left side pain, I have had that now for well over 10 years, I always thought I was having some type of kidney pain, never ever thought it would be related to cfids. That just really blows my mind.
I in 86 had got bronchitis, then pneumonia, then plurosy, and last but not least mono, this was a slow process started in Nov or 86, and on st. Pattys day of 87 is when I woke up and could not move, had the phone next to me and called someone to help me. From there it was tests, tests and more tests. My dad had the fatal type of lupus so they thought I might have that since I had also developed a sensitivity to the sun, but fortunately so far I have not.
Low and behold I had EBV, and also I was diagnosied by one of the top specialists in the field at the time. Unfortunately, I didn't recover, and when I went back to the dr. is when he explained what was going on. It took about 6 mos. to feel somewhat normal, but within a year after that I was getting worse again, it was then the chonic fatigue was told to me.
Now for symptoms:
Stress is one of the biggest triggers
sore throat
swollen glands
infections of all types
flu like symptoms when there is no flu going around that have me in bed for days or even week.
Another thing that I get that so far no one can seem to figure out and is very scarey is this, I get in both arms and it travels up thru my chest a restriction, I cant write, pick anything up and have to let it just pass, I have had every test including comprhensive heart tests and a monitor I wore for a month but is not heart related.
I cant gain any weight
I have irritable bowel
I have bad bouts of vertigo
I pass out several times a year
I have very very low blood pressure
I have a horrible memory
I get so confused at times I can barely talk
Daily fuctions are like running a marathon and are virtually impossible
my body feels like it is on fire every day of my life, somedays it is excrusiating
I have that left side pain in my side and belly
I have a horrible pain from my buttocks to my ankle at times where I have to actually put my leg on the wall
my joints ache
my head aches
have extreme sensitivity to certain chemicals and light
and of course the fatigue itself is just horrible, although I have a real hard time sleeping.
There is more but, at the moment I cant remember as the symptoms I experience.
I also had the endrometriosis and fibroid tumors for which I had surgery for, finally I thought that would relive some of the stomach pain, ha not so.
At one point they put me on lupron for my female stuff before my surgery ,and what every anyone who has chronic fatigue does.......DO NOT LET ANY DR. PUT YOU ON THE LUPRON INJECTIONS. it made my white cell blood count go thru the roof and I broke out with boils and an infection in my body that was unreal, it took me 4 mos to recover. I have since found out that Lupron is a big NO NO for chronic fatigue patients.
Now for the things that I have tried.
Iron - no help
vitamins - help a little
anti deppresents of many kinds - made me much worse
sleeping pills - made me worse
exersise - made me absolutely relapse ( I use to be very active before cfids)
I am a pretty healty eater anyway
Something that the woman trying to get pregnant might find interesting, I have a 5 year old son, when I was pregnant there was part of my pregnancy that I felt better than I had since the onset of my condition, I ask the infectious disease cfids specialist and he told me that many of his patients experience the same thing, a lull in this. Once the baby was born, it was back to the same ole same ole, and has stedily gone down hill.
I am now 16 years into this, and feel on a level from 1 to 10 ( 10 being worst about a 7), there is no way for me to work even part time because I don't know which day I will wake up so dizzy that I can barely walk, never the less drive.
This also is a sure way to find out who your friends are and are not.
I have just gone to court with a laywer to speak infront of a judge concerning disability for me, and should be getting the letter any day now, it has been a month now. I was denied 2 x for disability, and was shocked after research that the social security administration had broken their own laws set in place a year or two ago when they had me see thier "specialists", I actually got the laws surrounding chronic fatigue syndrome from one of the cfids newsletters and gave it to my laywer, he said on the off chance I dont win, they will do an appeal based on the laws that were broken.
I know this is lengthy, and I hope that anyone who suffers from this, is not as bad off as I am, but for those who are, if there is anything you find helpful here, I will be more than glad to help you anyway I am able.
I can also say this, I do know folks out there with this and it is not nearly this bad, and also that some folks do recover from this......so for many it is not a life sentence. What ever it happens to be, just take one day at a time, and at your own pace, don't try to conform on what everyone expects you to do, or you will make yourself even sicker.
I am 18 and was diagnosed with Mono in February...For about week i was not hungry at all but after that i could eat anything whenever i wanted. I stayed out of school until April but now i feel worse then i did before...I am waiting for my test results to come back today for Epstein Barr but i dont even know what the syptoms are. I am always tired and cannot concentrate, i try to go to sleep early each night but i don't sleep well. Even when i had mono i could never sleep, yet i was always EXTREMELY tired. Is this normal? please write back if you ever expierenced sleeping problems with mono. Also what are Epstien Barr symptoms?
Just had Epstein barr test come back positive 
