<p>I am wondering how many mono sufferers have had a similar experience to mine. I first got sick in July of 2012 and recovered uneventfully in less than three weeks. I was completely fine for a full year and thought that I was out of the woods. Then in July of 2013 I had the EXACT same symptoms come back. Enlarged spleen, swollen lymph nodes, fatigue, aches, brain fog, headaches etc. However, it was with a negative monospot. For this reason, my doctors figured it could not be related to my mono. It’s like I had all the symptoms, but the test would not cooperate. I was tested for everything under the sun by the doctors at my University’s student wellness center: (Thyroid, lyme, EKG, blood sugar, West Nile, ANA, HIV) All have come back negative.</p>
<p>I came home in September when school was just too much. I later found a new GP who recognized it immediately as a “Chronic Fatigue post state” and said it would be 1-2 years before I was completely back to normal. I’m not sure where he got that timetable from. 9 months into it I feel the worst of it is over but the one symptom that has not gone away is the tiredness. I will be heading back to school in June and know I can handle sitting through class, just not any rigorous activity. Even though I am much improved compared to when I first got ill, it’s concerning me that this could last so long.</p>
<p>Has anyone else gone through having a recurrence tied to the same time of year as the original infection? how long did it last? Did it recur year after year?</p>
<p>My D has chronic mono which flares up periodically and chronic fatigue syndrome. It is a serious drain on her stamina. Through the med school attached to her U, she has FINALLY found a doc who is helping treat the underlying virus that are IN her cells. If you want the doc’s name and more info, send me a PM and I’ll share. You need to be referred by your MD and send all your medical records. It can take a few months to be seen as he is VERY busy. His office is in Torrance, CA (near LA). She has been improving under treatment but it took us over a dozen years to find this doc and the treatments by the other docs she’s seen has not been nearly as helpful.</p>
<p>The doc is participating and preferred with blue cross and blue shield medical insurance. I’d caution you from attempting anything too strenuous before you are fully recovered, to avoid relapsing. Crashing and burning was very common for D.</p>
<p>D had mono (with positive lab results) twice in the fall, AFTER her flu shot. I was just reading a friend’s comments on side effects of vaccines on FB. They were talking about how people may have things inside of their cells that are triggered/activated by something introduced into their system. For my D, it seemed to be the flu shot. </p>
<p>Fortunately, my D’s subsequent episode was a little better than the first and she doesn’t seem to have any lingering effects. </p>
<p>But, she is about to leave for college this fall and I am quite nervous about any vaccine (meningitis) that she may need to get before she goes. </p>
<p>If you do go back, make sure to make contact with the disabilities office, dean and the health services, if you haven’t already. You could request accommodations to make school less of a strain on your energy: single room, reduced courseload (w/financial aid for the time it takes to finish), extensions on papers, make-up exams, excused absences, notes and other extra help and support.</p>
<p>Chronic fatigue syndrome is also called : myalgic encephalomyelitis (ME), post-viral fatigue syndrome (PVFS), chronic fatigue immune dysfunction syndrome (CFIDS). If you go online and find forums/discussion boards, people can probably refer you to an MD who is good with this. I have read that mono (Epstein Barr) can sometimes initiate this syndrome for some. </p>
<p>A friend of mine did Tai Chi while trying to recover from this and it helped a lot. She also takes adrenal support supplements.</p>
<p>I have a kid with a different chronic condition that also causes fatigue. You are not alone. Try to find support and information online if you can. Good luck!</p>
<p>Yea, stuff like that does come back according to some inner clock. Remember, viruses and bacteria do have “clocks”. I had reverberations from mono for years and used to get these “wonderful” recurrences of a gastrointestinal thing I picked up in Mexico. </p>
<p>A guess is that every once in a while you may get a recurrence that’s worse than other revisits, but it won’t follow a strict pattern and should weaken over time. </p>
<p>About the only question I have is whether the tiredness shows in blood work, as in lactic acid buildup. Nothing much you can do about that but if that’s there you know it’s there and work around it. </p>
<p>It returned one summer when I was getting only 3 hours of sleep at night and was working outdoors in the hot sun. Experienced dizziness, the room was spinning around, and I felt very weak. You have to take it easy and the moment the symptoms start see your doctor and get rest. </p>
<p>I agree with registering with your U’s Disability Office (with medical documentation), and tell each of your instructors in the 1st week of school, “just in case.” That way you have more options if symptoms worsen and you need a medical leave of other accommodations. Also, be sure to inquire about buying Tuition Refund Insurance, "just in case.’</p>
<p>Thanks for all of the advice. I will definitely get in contact with the disability office. Hlmom, does your D suffer from a chronic Epstein-Barr infection, as in her titers are always high? The reason being is when I went for blood work my IgM had cleared, but I still suffer from the fatigue, although it has slowly gotten better over time. I wonder if it is the same situation with your D. </p>
<p>It can be offered by Us and often is Dewars or others. USoCal and others offered it, as did our kids’ private HS. We didn’t get it most of the time, including the one term it would have been helpful for D’s health issues. Check with your kid’s U or private school. </p>
<p>Be sure to read the policy carefully, so you understand what is and is not covered. </p>
<p>People may not know this, but tuition refund insurance will pay the family not only whatever they paid for tuition but the entire cost of attending (room and board) AND the amount of financial aid will also be paid to the family. When this happened with one of my kids, I called the college and the insurance agency to see if it was a mistake. I wouldn’t wish a medical leave on anyone but it helped.</p>
<p>S has had fever and other symptoms off and on for a week. Today, with bad sore throat, swelling, etc., I took him to urgent care, and we’re pretty sure it’s mono. Oy! With finals coming up, graduation, etc., and just having signed up for a great summer work schedule (he’s a lifeguard). A steroid shot got him some relief from the swelling, and he could eat a real dinner for the first time in a few days, but he’s still really bummed. We’ll confirm with a blood test on Monday, but the Doc said it’s a textbook presentation, and with his GF having had it a couple of months ago, pretty likely.</p>
<p>Any thoughts or ideas? I never had mono, so I don’t really know what to expect. His GF (from whom he got it, no doubt) was only out of school for a week, and he mistakenly thought she was “better” (I didn’t know how RECENTLY she’d had it until today; they just got together a couple of weeks ago, and I had been led to believe that she was well over it by then; turned out not to be quite accurate, since one can be contagious for months).</p>
<p>Is he likely to be able to take his finals a week from now? To attend graduation in two weeks? It seems from what I’ve read that the worst symptoms usually last only a week or two, but it can be much longer. Experiences?</p>
<p>I’m hoping that if he tanks his finals, his grades will still be ok, and since he’s already gotten into college, a couple of Bs shouldn’t hurt, right? But maybe his teachers will just let him skip the finals and take the grades he has now? He really feels like he can’t handle finals the way he’s feeling now. Oy.</p>
<p>I’d suggest he contact the disabilities office and his profs now (email NOW) and let them know what’s going on. When I had mono decades ago, the student health center refused to discharge me from the infirmary to take my exams and made me get incompletes and make up my classes after winter break. </p>
<p>Your S won’t be the 1st kid to have this. If he is still ill when finals hits, maybe he can get an incomplete, participate in the grad ceremony and then make up his work over the summer, as soon as he’s feeling up to it. </p>
<p>People vary greatly on how they recover from mono. It’s important to get LOTS of rest to have a full recovery. Mine was a very mild case and I flew from college to have winter break with my sister, resting a lot, so I recovered well and came back to school in January and quickly made everything up. </p>
<p>Thanks, but S is in high school. He’s feeling better today but is clear on the “lots of rest” concept. We’ll talk with the school admin and teachers tomorrow. I’m sure something will be able to be worked out.</p>
<p>Oh, for HS, I’d imagine it’s much easier to work out. Just get the signed note from the doc and incompletes if he’s unable to take the test, see if they will let him walk for grad and then complete the work over the summer as soon as he’s up to it. HS is used to these things coming up, I’m sure and will work with you if they have a signed note from the MD.</p>
<p>I’m sure if you search CC for mono, you will find the myriad of warnings about going back to activities too fast, and the risk of relapse. My D was one of the ones who, when finals hit, notched up the activity a little even though she’d only been diagnosed two weeks earlier. Unfortunately, within 12 hours of arriving home for the summer, she relapsed much worse than the original case and it basically took her all summer to recover. I know my story isn’t the only one on CC.</p>
<p>Wow, I hadn’t realized it could relapse like that. It’s going to be hard for S to decide how to manage this - when to take his finals (if deferment is a possibility), when to go back to work (his job can be stressful but isn’t usually); is it activity level or stress that is critical? How can you know when it’s ok to do stuff? He was looking forward to working about 30 hrs/wk this summer, to make money for college in the fall. Sounds like he should scale that back? Is it ok to do “fun” stuff that’s not stressful, once the symptoms have subsided? I’m guessing the all-night “grad night” after graduation is out?</p>
<p>The vast majority of teens with mono recover reasonably quickly. He can return to his usual activity when he feels up to it. If he is not able to keep up with his work week, he may need to scale back but I wouldn’t do it preemptively. Similarly, let him go to grad night if he feels up to it. He can take a nap before hand and make a plan to get home early if he runs out of energy. I wouldn’t worry about the CFS. No one really knows if it is a definable disease and in any case, relapse and chronic fatigue relation to mono are very controversial topics in medicine - most reputable infectious disease experts dismiss the role of mono (Epstein Barr Virus) in these diagnoses. </p>
<p>VSGPeanut, this seems to be what I’ve been reading online - that he’ll probably be over the worst symptoms in another week or so, and can do what he feels up to. Also, it seems that since most of us have been infected, and become infectious periodically throughout our lives without symptoms, after the initial sickness he need not worry too much about going to school, work, etc. </p>
<p>His school admin and teachers have been very reasonable (we emailed them this morning and received responses already). And that has removed some of the initial stress, too.</p>
<p>My ears always perk up when I hear that someone gets mono right before finals, because it’s not necessarily the finals that are exhausting, as it is all the year-end activities that tend to be going on. Kids can lay in bed and rest when they’re in finals, but what happens after finals??? Moving out the dorm, apartment, etc. And that requires some physical stamina - not only the packing, but cleaning, etc. I think that’s what eventually got to my D. She laid low during finals, but once they were over, she had things she had to get done by a certain deadline to be out of the dorm and move 700+ miles back home. I think had she just had to deal with going to classes, and resting, it would not have happened. </p>