Long-lasting Mono Symptoms, Any Advice?? (Page 2)

I had mono when I was 18 now am 32, I have not felt rested since and can not sleep well, up every hour cold sweats ect. been to numerouse docs some say cfs others are simply closed minded to CFS but refuse to say it isnt it. I dont know cant work life ruined by since mono..

I hate to add to the long list of mono- mania, but I wanted to mention that "Magic Mouthwash" also called "Miracle Mouthwash" is an absolute lifesaver when it comes to the excruciating soar throat, which for me (other than the inability to sleep due to high fever) was the worst part. Only 10 bucks with insurance and it is the only stuff I have found to work without a nausea inducing taste. The high fever and pain only struck me for two weeks this month, but the throat and lymph node swelling and pain has been an ongoing thing for almost three years. Good luck all.

O mono is funn...haha not. My mono story is like everyone elses. More like gametime's though. I used to work like crazy. I was a very motivated engineer until about 6 months ago. I got mono, however never really tested positive for it! I did test positive for Epstien-Barr virus which causes mono. It also took several docs 1 month to find what the heck was wrong with me. You think they would see this alot?!!? Anyways the doctors screwed me big time. For this one month they put me on every anti-biotic known to man...bad idea. Anti-biotics are horrible for viruses esp mono. This lead to the antibiotics killing all bacterial in my stomach which lead the yeast, a fungus, having a free for all in my stomach. The bacterial in our stomach keeps the yeast in check, without this the yeast does what it wants. In all this lead to systemic candida infection. Google it. It is quite common with high levels of EBV (mono) and treatment of anti-biotics. Anyways, I thought I was fully several times...haha no mono has the last word, but for those of you suffering from post-nasal drip, canker sores and stomach problems even circles under the eyes, it could possible be that EBV has weakened your immune system and candida ( a fungus) is having a free for all through-out your body. Docs are smart, but you can be just as knowledgeable if you take the time to research. I am still feeling the effects of both mono and candida today!! 6 mon later after I thought I was fully recovered at least 4 times. My spleen still hurts, my liver too, headaches, tired...blah blah blah you know how the story goes.

Good news though try some of these herbs they are great. My doctor actually told me about them.
olive leaf extract
coconut oil
pau d'aro
they should help. Google them took (what a great invention).
BTW i'm 23 and use to run a mile under 5 min, now i'd be lucky if i could run a mile. ha joys of mono... to all good luck

I had mono in 2002 when I was 15, now am 24. My story is like everyone else's, however, my symptoms have seemed to kind of worsen over time, I think maybe I got it a second time and didn't know about it and the symptoms got worse after the second time I had it. My last doctor just diagnosed it as anxiety and depression and gave me a bunch of antidepressants and xanax and crap that didn't help my symptoms at all. they run one blood test and call it a day and i can't tell you how many times i have cried leaving the doctor's office. like everyone else, no previous health problems and now i have quite a bevy of them. and i must say after 9 years i'm not really too positive. it basically seems to me that doctors don't really know too much about mono as there is no cure and know even less about what happens afterward. i think we give modern medicine a little too much credit sometimes, there are so many things we DON'T know, but don't give up hope (preaching to myself too!) if enough of us keep going and keep complaining eventually someone somewhere is gonna connect the dots! i feel like i have been robbed of the best years of my life and wake up every day so tired and funky feeling i don't wanna leave the bed. i don't know if its the mono or maybe something else, but they've tested me for thyroid probs, diabetes, and a million other things and "nothing was wrong." all i can say is keeping a positive attitude that someday things will be different is what keeps me going. thanks everyone for the posts, it makes me feel much less alone

I had got Mono in 2008 at 26 and I'm now 29 BUT I was not diagnosed till 6 months ago!
My symptoms have just got worse since then. I would get sick every 3-5 months but for a week at a time.
HAS ANYONE HAD THIS HAPPEN TO THEM???
I have read most of all the posts, most hit the mark. Since 6 months ago, I've been consistently sick everyday is different but some are really sick, extreme set backs and cry lots on those day. Can't help but think if this will ever go away or feel normal again.
I too have had 100 tests! All come back slightly "normal" and I too dont beleive the Doc's know much about this virus.

YES
I'm currently here because we thought maybe i have celiac because i was so sick all the time but all of my sickness started after getting mono. I'm extremely strict on my gluten free diet but I still get sick every 2 or 3 months, for a week or two. im looking for answers, I'm wondering now if maybe its something like this i have since im still sick. i havent been the same since mono and its been 1 1/2 years. I cry all the time because i feel like im dying, theyve tested me for EVERYTHING and cant find any problems. im scared

I have had a similar experience. I got mono in 2000 after kissing a girl in Europe, and I have never felt the same since. But today, I feel pretty good and energetic. Let me tell you what you need to do.

I have a master's in epidemiology and I have talked to the world's foremost experts in post viral fatigue (i.e. Andrew Lloyd, MD from Australia). This is what appears to be the issue. Epstein Barr is a systemic infection, and if you get mono bad, your immune system, not really the virus, damages many organs in your body, specifically the brain. The good news is the "hit and run" injury to the brain (the main origin of fatigue) probably does not damage neurons, but glia, microglia. These cells absolutely affect how neurons function and how you feel, and when they do not function as before, you feel worse. Also, the B cells, where epstein barr replicates, get damaged, possibly forever. This leads to the increases associations with MS, Lupus, and other autoimmune diseases.

What I have found to work profoundly, from extensive research are: methyl b12, vitamin D, low level mutivitamin/mineral, magnesium citrate, highly concentrated fish oil (500mg every other day), and a healthy diet that includes onions (other foods high in sulfur), spinach, bananas, nuts, apples, wheat berry bread, some fish, grass fed meets, kale, and so on. Also, cut down on the alcohol, and drink a high quality green tea. Have your thyroid checked, or take Thyrostim, a supplement that supports your thyroid. This should help you feel way better. Hope this helps.

Hi Max,
Your opinion certainly falls among the most interesting theories I have read on the internet concerning long-term mono (coming from a person that have read almost everything about mono).
It makes perfect sence, probably the neurological & psychological symptoms that come as a result of mono can really occur due to damaged nervous system/glia. Another approach I have read is that mono affects the limbic system in the brain thus causing various weird sensations we all experience.

I have a couple of questions though, first off: is glia able to eventually self-repair, or the damage remains permanent? Probably the required time for the process is a couple of years, which is the period mentioned for Chronic Mono to subside?
Second, is there serological evidence for damaged B lymphocites, can you test yourself for this through bloodwork?

Again, I find your theory highly intriguing for anyone of us long-term mono suferers. It makes sense that regardless of how strong your immune system have been prior to mono, it can actually turn into your worst enemy. Active, strong and healthy people like me (just 6 months ago) will always wonder why mono hit us that har and probably that is the answer. Maybe that's why children, who still have not fully developed their immune system go through mono in a couple of weeks just like it's yet another flu while adults get smashed. Or why even after bloodwork reports perfectly fine we still continue to have unusual symptoms with mono - probably because the main damage is done to the nervous system and/or brain - this will not appear on a blood test...

Wow... it's amazing to hear all these stories. I was infected with mono in highschool, and then in college I got REALLY sick again. My right lymph node in my neck was about 3 inches long, and sticking out about an inch from my neck. I worked for a vet at the time and he said, "you have mono." So I went to the dr and she said, no you can't get mono twice. But she checked me anyway. Negative monospot (blood test). So I kept running, working 2 jobs, going to school full time, seeing my bf (no husband) on the weekends long distance... I ended up SEVERELY ill. I got a really bad cold, and my throat swelled up so much I couldn't swallow solid foods. I kept going back to the dr, and they just kept prescribing me antibiotics... which did NOTHING. I finally went into urgent care on christmas day after having severe cold symptoms for several weeks, plus the swollen lymph nodes (which now my neck looked like I had a string of pearls under my skin down both sides), extreme fatigue, and spleen pain. I came back with a positive mono spot - which means I had an active infection. This doctor explained to me that once you get EBV (the virus that causes mon0), you always have it, and if you get run down, you will get an activated infection again. He checked my blood, and not only was my spleen enlarged- so was my liver, and my liver enzymes were all abnormal! I was so sick. It took me YEARS to recover. I couldn't run again until 2 years later without my heart rate going over 200 BPM... and I didn't get back to my normal wait until about 3 years later. 1 year after that horrible sickness, I weighed only 112 and I'm 5'6. Now, my nightmare has returned.

I noticed 3 and a half weeks ago that my tonsils were enlarged with pus on them... and they only looked like that the second time I had mono. Extreme fatigue again. Spleen pain. I went to the dr and he gave me the same story... you can only get it once. Apparently some drs think that "persistent mono" does not exist. I'm still working on getting all my chart records to prove that I tested positive twice... but anyway... the only thing that helped me get better last time was 1000mg of vitamin C every few hours every day. Now though, I found out I have a condition which causes painful inflammation when I take vitamins... so I've been taking a lot less. I'm so miserable! I'm going to try B12 shots and hope for the best. I guess I would rather get better and be in pain temporarily... but if anyone has suggestions for what helped them, that'd be great. Or any info on persistent mono.

these posts don't exactly make me feel optimistic. I was diagnosed with mono over a year ago. I was ridiculously tired, but the most annoying symptom to me was the dream like "stoned" state my head was constantly in. It was as if I was so tired that my head felt clouded..hard to think and so out of it. That feeling lasted from August to February pretty severely, then I felt a little better, but I still would feel runned down and out of it from time to time.
It is now over a month later, the following August, and I am having those exact same systems. Almost feel like I have a fever, throat hurts a little, so tired, nauseous, and very out of it. I feel defeated and feel like I will never recover and be myself again to the point of near depression. I'm not sure what to do either. B12 doesnt help nor do multi vitamins. I've never felt so frustrated and helpless

tljones3....

I know how you feel on some level, I have had a rough time myself and am currently having another active bout. The thing that helped me the most when I got severely sick in 2006 was taking 1000mg of vitamin C several times a day. I used the product called EmergenC, which also has several other B vitamins. I experimented by taking only vitamin C and only B vitamins... and to my surprise, it was the vitamin C that was making my lymph nodes get smaller. I would take the emergenC and my lymph nodes would shrink a little bit, and then slowly through out the day get bigger again, until I took another dose. It was really weird. After a couple weeks of this, my lymph nodes were still enlarged, but were noticibly smaller. I also was able to swallow solid food again... I had been on predisone and that didn't even help... but that's just me.

And depression got me too, because I couldn't do anything! (and I'm fighting that now too). Working out was out of the question, and I had to pretty much be a shut in. But... things DID get better last time. I was able to start walking... and very slowly... walking turned into running after a couple years. And I got used to the idea that even if I was only able to walk 1/4 of a mile, if that was progress, that was a really good thing - instead of saying, "wow, I only walked 1/4 of a mile, that sucks." That helped... and just doing really really laid back stuff with friends, or significant other, like going to a coffee shop and playing cards. Just getting out, but not over doing it, when you have a good day where can be really refreshing.

I really hope you start feeling better! Maybe you should see a neurologist and they can check out your neurological symptoms. It seems like I remember reading very rarely, mono can cause neurological complications.

Okay i need some help I got mono my freshman year of highschool and now i am a senior. I have had ongoing heart probelms? Could this be related? Doctors have been running test after test on me but nothing shows up except in my blood work i have remaining mono virus cause apparently the virus never leaves once you get it. I am so young i am on my highschool sports teams i just want to be the energetic me that has been missing for so many years now. PLEASE HELP

Hey fellow chronic mono-sufferers. So many of these stories sound just like mine. I will recap my story as quickly as possible and then enlighten you all on what is saving my health.
I fell severely ill in December of 2003, my freshman year of college. I literally could not get out of bed for five weeks, suffering from all the worst mono symptoms. Doc confirmed I had mono. It took me months to finally feel halfway normal, but, like everyone else, I believe my immune system was permanently damaged, and that was seven years ago. Ever since mono, I developed chronic debilitating headaches, stomach pain, nausea, IBS, arthritis, autoimmune thyroid disease, food intolerances, acne, overwhelming fatigue, anxiety and panic attacks, weakness, swollen glands, and recurring throat problems and sores in my mouth. I was always a healthy, active, and strong person prior to mono. I used to be able to out-lift some guys and was one of the strongest girls in my high school graduating class. Now I struggle to even open doors, nonetheless carry around my 21 month old daughter. Every day is filled with pain. I've seen doctor after doctor, specialists, allergists, you name it, and NO ONE helps me. They send me out with a handful of prescriptions, each one only addressing one symptom instead of looking at my symptoms as a whole. I've even been accused of making up my symptoms before just for attention! The medical field is absolutely ridiculous and gains waaaay too much credit for doing nothing but endorsing pharmaceutical companies and their products. The $ in kickbacks these doctors get from the companies for prescribing their drugs is ludicrous! The whole medical system is extremely misgoverned by a malevolent hand based on avarice and deceit. If you actually do some research you'll find some pretty despicable information.
Does your doctor ever make you feel stupid for feeling ill, write you off as a nuisance, or ignore many of your symptoms? Ever been doled out antibiotics just "because"? Do you really ever feel satisfied with their answers when leaving the office? If our doctors performed their jobs as they should, wouldn't we be healed by now? Are we healed, or are we given copious amounts of drugs that only mask our symptoms? Yet here's the catch: if they actually viewed all of our symptoms as a whole to find the cure, we'd reach homeostasis in our health. And if we're cured then we don't need doctors anymore. And if we don't need their help anymore, then they lose money. See the picture here, folks?? If they actually cured us they would be out of the job!
Well it's time for us to take back our lives! We have a right as health consumers to know what is really going on inside our bodies. We have to stop being puppets in their multi-billion dollar show.
Spanky331331333 hits the nail on the head. I will bet most everyone of you, as am I, are suffering from a chronic candida condition that is hindering our immune system from fighting back against the EBV that is recurrently flaring within our bodies. Our health starts in our gut! And the typical America diet and any prescription (or OTC) drug you have ever taken causes damage to our intestinal tract. I bet no doctor has ever told you that, nor mentioned a word about a yeast overgrowth in our intestines, which in return is filtered into our bloodstream and circulated through our entire body, manifesting in a multitude of symptoms. But here is what you can do to take back your health: CLEAN YOUR GUT of all the toxins and fungus that has built up over the years! I am in NO WAY a sales rep for Colonix or Syntol, but I am telling you, these two products are saving my life! Check out and read some testimonials to see if that sounds at all like you. I swear you will be amazed! If you do a three month colon cleanse and take a very powerful probiotic (like syntol) and do not notice an improvement in your health, then please by all means try to contact a naturepathic doctor to see if something more serious could be affecting your health.

I wish you all the best of luck, and trust me, it just may be the best investment you ever made. God bless,

RLHC

I think the above post by Bravestone should be removed..She's obviously spamming here for the websites she's promoting.

Had mono at age 13, now 24. Originally had dibilitationg fatigue, developed into depression, severe anxiety, tremors, migranes, ADD, trouble thinking, inability to manage stress. Years later developed CFS sexual disfunction, imbalanced sexhormones, adrenal fatigue, low cortisol, low vitD, low immune function, low magnesium, allegies that grow everyday, candida infection, hypothyroidism, autoimmunity. After all these years here is where Im at: Some people get over mono and on with life easy as pie. Some get hit hard with lasting effects. Ive been tested for everything else including lyme and mono is all they've ever found. My life changed with mono and it recked my body, personally. Im making way by using an approach similar to bravestone. Improve immunity function (gut, yes gut has alot to do with it) address coinfections (this means atleast yeast in most ppl) forget about modern western medicine, think outside the box. Most important stick with God, your problems are best in his hands over your own or anyone elses. There is hope for us all. If you are dealing with mono in the first few yrs jump on it soon and address these issue with comprehensive blood test and suppliment with at least immuno complex and probiotics. Love you all

My story sounds similar to everyone else's except a little less extreme. Last December/January, I got infected with mono from my girlfriend. The first test was negative but then the following one was positive. I was experiencing night sweats, fever, sore throat, muscle pains, and extreme tiredness. It is now almost a year later and I still have random muscle pains and constant tiredness and sweats/chills, and maybe a slight fever. On top of that i have loss of appetite so it is really hard for me to gain weight. I have to say the worst symptom of this infection happens to be the depression of the disease not getting better. This lead to me worrying about whether this was really just mono and getting irrational blood test after blood test in my hypochondriac-like state. It is not that bad in that I can still function pretty normally and do everyday tasks, but applying to Colleges when all this is happening is extremely difficult. I have noticed in the past weeks it has been seeming to get better so for everyone else out there stay in there and hopefully it will go away someday

I'm happy to find this forum. Before reading this page I didn't think there was anyone who knows what I've been going through. Starting around the end of July to August I thought I was having just really bad allergies, but since I was going through the walk-in clinic, everytime I got a different doctor and a different answer. Finally one day I got in to see a family practitioner and she suggested doing the labs to find out what I was allergic to and it came back that I wasn't allergic to any of the known allergies they tested me for. around the same time the sore throats and the sinus pain stopped but I just felt soo tired, that I went back and thats when she tested me for mono and it came back that I had an infection for about two months. since then I found out I also have a vit D deficiency and now found out I'm also anemic. I was wondering if this was common during/ after having mono? When she prescribed the vit D it gave me a boost but that was only for 90 days and now we're waiting on the labs to come back before she will renew the prescription. We just found out about the iron so I am starting that tomorrow. I told my mom today I didn't know it takes 6 months or more to fully recover from mono and she said sometime it could take years. I feel the same way a lot of people exressed here - just how much longer is this going to last and am I ever going to get my regular energy level back?

I cried when I read everyone’s stories. I thought I was alone…

I am 33 years old. Up until I was 15 years old and got mono, I was healthy as a horse. When I got mono, my throat swelled up and was covered with infection, I vomited countless times per day (even though I couldn’t really eat), I had a fever of over 102 degrees, my entire body hurt, and (the worst part) I couldn’t sleep. I distinctly remember lying there at night crying because I couldn’t take it anymore. It lasted several weeks. For the next 4 years, I repeated the same 2-week process every 6 weeks- like clockwork! I missed or barely made every important high school event. I was on antibiotics most of the time and always ended up at the hospital for fluids.

When I was 19, I had my tonsils out. Everything changed!! While I was still always tired, the other symptoms disappeared. But when I was 21, I began suffering from frequent migraines (3-5 days/week). I still have them. By the time I was 22, I was vomiting and had diarrhea 10-20 times per day. I could barely eat. This lasted for years. Even now, I have frequent symptoms.

Like most of you, I have been to every doctor and tried every treatment. Recently, I tested positive for mono- all 3 levels. I am now wondering if the mono isn’t the culprit behind most of this. Every day is a struggle. I’m exhausted, my body is achy, I’m nauseous, I can’t fight off any germs, I have had a weird, itchy rash for 6 years, I have migraines, and I am now allergic to tons of stuff. I’ve thought I was cursed, being punished, lazy, crazy, a hypochondriac, dying…you name it.

I do not get a lot of support from my family or my job. People think I am weak- after all, I appear fine one day and am debilitated the next. It doesn’t help that we have few answers for them…or ourselves. But I believe we are incredibly strong!! People don’t realize how difficult it is to function- to live- like this.

I was really touched by your stories and I wish you all the best of luck!

p.s. the last few years my temp has dropped to 97.2 on a regular basis. I noticed some people mentioned it so I thought I would throw that out there

I was a healthy, happy and athletic kid till I got Mono. since then (about 20 years) I've been ill often and suffer chronic pain symptoms. I'm now working with a nutritionist and hoping I can get some relief. So far, western medicine has failed to find any diagnosis for my current symptoms..... I though I was the only one.... why has no doctor addressed this?

Let me know if you found anything to help. I have found somethings to help me, but I am never great at keeping up with them.. are you a smoker at all?

Mauigirl82, At one time it was thought that mononucleosis causes Chronic Fatigue Syndrome but that has since been disproven. The true cause for CFS remains unknown.

I feel like I haven't been the same since I had mono in 6th grade I am now 37. My energy never seemed to come back. I have been doing research today and what I have come up with is that my spleen never fully recovered or I just haven't been taking care of it. So I found some websites with foods that might help and herbs to take. I am pretty healthy person, a vegetarian, gardener and have been an athlete all my life. I also believe in the power of herbs, I have found turmeric to be a super food (research it). So I am going to try some of these things that I have found and focus on my spleen. I am not sure I can post links here....

I'm a 30 year old female and was just diagnosed with mono yesterday, went in for possible strep-which I had (or was misdiagnosed with) 2 months ago. They never swabbed my throat then and just assumed it was strep, looking back I think I've had mono since then. It all makes sense, especially the extreme tiredness. So here I sit reading all these stories and I must say I'm a bit nervous of what's to come. I'm thinking about having a full set of bloodwork done just to have a baseline reading. I sure don't want it to effect my liver since my mom was just diagnosed with early stage 4 chirrosis and may need part of mine. Thankfully I don't feel horrible just tired, sore throat and headache. Glad to have found this site, hope everyone starts feeling well again soon! Take care everyone....

I am a 22 year old male and was diagnosed with mono almost three months ago and there is NO way anyone can be prepared for the roller coaster that this illness is. It creeps up on you slowly,then just starts beating the sh%# out of you,then lets you think you can rest,then starts slapping you around a bit,lets you rest, and so on and so forth. The symptoms are so unpredictable. I'm no longer able to live the "normal" life of a 22 year old. I can't even make plans for the following day considering I don't know how I will feel. Not to mention how mentally draining this whole experience has been. The isolation, and depression. The loss of my sex drive. Having no desire to actually put on a cute outfit or style my hair. Little stuff like that, that used to make me feel good seems pointless and exhausting. And the only people I know personally that have had it, had it when they were 16 for two weeks.lol. Obviously my illness has gotten bad enough that I found the need to seek out a "mono support group" and I must say it is comforting to hear that I am not alone yet frightening to think I will never feel like myself,however everyday I find it more difficult to remember what that felt like. I'm not concerned with miracle cures,coconut oil,organic honey,or whatever else western medicine seemed to let slip through their fingers. I honestly feel like I'm morning the loss of the old me. I haven't worked in months and am relying on my parents financially. I know I will have to go through my own process with this and perhaps all the symptoms will eventually go away but, perhaps they won't. Just wanted to let anyone out there know if this illness is affecting you physically,mentally, AND spiritually, you are not alone.

Please NO offense, but... I've never known a guy to say something like:

"no desire to actually put on a cute outfit or style my hair."
Sounds like something a girl would say.

just saying.

Offended...please lets just stay on topic and not judge.

My son is 4 and was diagnosed with mono 6 months ago. His symptoms were extremely high fever, fatigue, swollen glands, and night sweats. Occasionally he would complain of headaches. The alarming part of this is he's been getting very high fevers lasting 3-4 days almost everyother week for the past 6 months. I keep taking him to the Dr. and they say the body is over reacting to every little thing he's been exposed to and there's nothing they can do. It's just a bug. He was cleared of mono 2 months ago. Test came back negative of mono but the symptoms continue. They tested for everything. I'm still very worried and concerned. Any children with similarities out there?

Hi I know it's been a while since you posted, but I was wondering if your son ever got over his symptoms. My daughter is 6 and she keeps getting sick from sore throats & stomach aches plus she is constantly tired. her doctor keeps saying it is from having mono. I just want my happy girl back! thank you

My son is 9 now. Last Christmas he had all the spleen/abdominal symptoms of mono, but it was just waved off as an intestinal virus. Since then, he has been sick with something every 3-4 weeks. He has missed 30+ days of school. Now he has been positively diagnosed with mono. Our doctor tries to do as we request with all the tests and such, but it's really hard not to worry about your own child.