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I'm new here & have mono-will i get CFS??

Discussion in 'General ME/CFS Discussion' started by Lyra, Mar 4, 2013.

  1. Lyra


    Hi Everyone,
    I've had fatigue for about 9 months and just now was diagnosed with mono. (negative in blood-but positive in titer if I understand correctly) The NP who finally found this (after several doctos said "you bloodwork is fine") said I might have had mono for the entire 9 months-which seems to me to be more serious than its normal course of a about a month.
    I have been reading this website for months wondering if I have CFS.( I have PEM-that's what made me think CFS)
    I hope some one can answer my question: That is, does having the Epstein Barr virus(especially for so long) mean I'm very likely to get CFS in the future? And more importantly is there anything I can do now to avoid getting CFS?
  2. SOC

    SOC Senior Member

    It's certainly possible, but far from guaranteed, that you'll develop ME/CFS (or already have it). If you have PEM, the likelihood that you have ME/CFS increases. Your best bet is to go to an ME/CFS specialist for a diagnosis and get prompt treatment if you have persistent EBV or other pathogens.

    If you tell us where in the world -- country or region of US or Australia -- you are, someone might be able to suggest a specialist in your general area.
  3. wdb

    wdb Senior Member

  4. heapsreal

    heapsreal iherb 10% discount code OPA989,

    australia (brisbane)
    dubbo study on ebv and 2 other viruses found that 8% from memory ended up with ongoing fatigue with cfs/me symptoms? I think the early u get treatment the better u can recover from it, stopping it from maybe getting deeper. generally mono should be sorted within afew months if not then i would be asking doc for antivirals etc. I wish i had done this earlier instead of waiting 7 years or so??
  5. snowathlete


    Hi Lyra,

    Thanks for your question, I think it is a good one.

    I had mono when I was a teen, like you I had it for a long time. I was bedridden much of the time and had it for about 9 months, got better went back to school and relapsed a few months after that and had another few months off feeling dreadful.

    Like wdb says, mono is common, but as you point out, it isn't that ordinary to be ill with it for 9 months or more (not unheard of, but not the norm for most). Probably not everyone who gets mono badly gets ME/CFS. I dont know if anyone has studied that (severe cases and subsequent ME/CFS?) .

    Personally, If I had my time again and knowing what I know now, I would definately have sought treatment...of course, I was a kid back then and my doctor didnt offer anything...potential for ME/CFS aside, the point is that you have a severe herpes infection and whereas most people get over it pretty quickly (and likely you would eventually) you havent yet, so I would seek out a doctor who will prescribe something to get it under control. I also got sick with EVERYTHING for next couple of years after mono where it had hammered my immune system, so I dont see the point in risking going through a grotty experience like that when there are drugs out there that can probably help you avoid it.

    Hope that helps.
    health_seeker, heapsreal and SOC like this.
  6. Esther12

    Esther12 Senior Member

    No-one knows at this point I'm afraid.

    From memory, I think that about half of those who are still ill at this point seem to go on to have long-term problems. We don't really know why, and don't really know how to avoid this happening... but don't stress!! (That was a really inappropriate but irresistible joke, sorry).

    If I were you, I would focus on relaxing, playing about, eating well and doing what my body felt like. If you relax yourself and feel as if it would be nice to go for a walk and do some gentle exercise, do that, but in a way that gives you plenty of opportunity to stop when you feel like you want to rest, so that you can then do that. Try to avoid things which will tie you down to a particular amount of activity, or pushing yourself in a way which, when you relax yourself, leaves you feeling as if you want to stop. Just be guided by what feels nice.

    This is pretty much the opposite of the advice I was given... and I'm still ill!

    Also, this is very much my personal opinion, rather than something which I can say has any evidence that it will be helpful, and I actually suspect that different people would be best off doing different things post-mono, and finding something which suits them as an individual. The evidence in this area seems really poor to me, and if you find something which makes you feel nicer, then I would just do that. Personally, I would not spend much of my time seeing doctors and expecting them to be helpful, as there's probably not much that they can do (assuming that there is not a valid alternative diagnosis available to you), and some could end up being actively unhelpful as there's a lot of quackery in this area (particularly in the UK it seems - I was recently posting in a thread about how medical staff are being misled about the value of Chalder's psychosocial intervention's post glandular fever: http://forums.phoenixrising.me/inde...o-educational-intervention-to-aid-reco.13326/).

    Good luck with it all.
  7. I had mono when I was in my 20's, then a reactivation of EBV when I got sick with ME/CFS. While I was very sick both times, the bout I had in my 20's had a high fever, rhinitis, swollen glands and laid me out for a couple of weeks. Then I was able to go back to work (with naps at lunch time). But I didn't feel totally right for about 6 months. I guess my point is, it was definitely a normal type infection process, not just fatigue of unknown origin.

    On the other hand, for the reactivation, I was having bouts of flu-like illness for 6 months, but only had a very low fever, and some lightly swollen glands. no sinus involvement. The main thing was I felt horrible, had a lot of fatigue, and my ankles and feet ached. Then finally I got too sick to go to work and although the EBV stuff improved after a few months, I never really got better.

    Same deal - the doctors saw the titers on my labs but didn't bother to tell me they were high. My diagnosing doc remarked on it 6 months later and said I had had a recent EBV reactivation.

    Had I known at the time I had EBV, I would have quit work immediately and started resting, instead of trying to push through. Who knows if I would have recovered, or still been sick, but not as debilitated as I am?

    I think finding a CFS specialist at this point is a good idea. In lieu of that, or in addition to that, going to a naturopath or holistic doc could also be helpful.
    heapsreal likes this.
  8. overtrain

    overtrain Medical Mafia needs to die via this virus.

    I got Mono for the 1st time at age 49. I went thru MANY doctors who all told me blood was fine... several ER visits later, I found a doctor who tested for EBV... sure enough. I got Mono in Sept. 2011 & have been pretty much housebound since. Until 2011, my immune system was excellent; rarely sick, & I was in peak physical conditioning. The post-exertional thing set in, weight loss, fevers, and fatigue so bad I thought I really might be dying. I was crawling to the bathroom. Yeah, I googled. Treated w contempt by doctors the whole way thru ("CFS is a fad" Stanford doctors are a crock" etc.). I diag. my own CFS, read sites like this, figured out what antivirals to request and got none. Zilch. Ended up ordering antibios from a petfood store which brought my fever down after months - . I wish I'd ordered antivirals from wherever from the get-go. Also, as far as titers go, there is no agreement across the medical community about their significance. I know my body and therefore do know my Mono was ACTIVE and I was infectious. Will you get CFS? Time will tell. Good luck. Right now taking pre/probiotics seem to be preventing daily crashes.... major relief & hope. =)
    heapsreal likes this.
  9. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    Those who have severe mono are far more likely to develop ME/CFS, the sicker one is with the mono..the more likely. The study statistics of this are 10% of those who get mono end up developing ME/CFS. This used to be called "post viral syndrome" and said to last up to 2 years. If you do have this your chances of recovery are better during that time(with rest.. pushing yourself before fully recovered can make you illner.. the worst thing you could probably do during this time is "push" yourself while sick. Stay within your limits you need to do to stop feeling more unwell. Many of us "pushed" after a virus and then crashed bad into ME/CFS and then never recover.

    My case is interesting as I had severe mono as a teen and thou I was bedridden for 10 weeks with mono and extremely sick with it.. I didnt develop ME/CS at that time but got it over 10 years later!! I believe that whatever predisposes us to mono.. also may predispose us to ME/CFS (possibly something making one TH2 dominant would predispose to both) and that anyone who ever has severe mono lasting longer then it should.. take care! Its a sign something isnt right (our immune systems are compremised or something).
    overtrain likes this.
  10. CallieAndToby

    CallieAndToby Senior Member

    A lot of people get very sick from mono but eventually recover and don't get CFS. But I'm not very knowledgeable. All I know is the lead singer from "bon iver" got mono and was bedridden for 6 months, in that time he wrote all the songs for their hit albums. He then was able to get out of bed and recorded the first album himself...........he eventually got better, he's fine now and touring extensively.
    herpesbaby likes this.
  11. SickOfSickness

    SickOfSickness Senior Member

    I believe that you would only get ME/CFS if you had too much stress for too long. Any type of stress like emotional, physical (like a serious injury), or especially something directly on the immune system like viruses. I think it's all about overloading the immune system and how long it's overloaded. If it's only overloaded for a few months, then I suspect it can recover in a few months to a year. If it's overloaded for a year I don't think it can recover for many years or ever recover fully, until science discovers more. I think it's because of picking up more stubborn viruses and biofilms and problems. I think you can be okay since you know about the possibility of ME/CFS if you push yourself hard.
    CallieAndToby likes this.
  12. CallieAndToby

    CallieAndToby Senior Member

    Totally stress related. Most patients I meet say they were very very stressed, not sleeping, not eating, etc.
  13. PhoenixBurger

    PhoenixBurger Senior Member

    I agree with Callie and SickofSickness on this one. Though I am no expert - I had mono 12 years ago and it lasted about 3-5 months. But then I was completely fine. Until some very very serious thing happened in my life that introduced cellular damage via potent medications I had to take, a hepatitis B vaccine, fear of impending diagnosis of terminal disease, etc ... bottom line - major stress induced on my body for months and months. Both emotionally and on a cellular level. It was only after all of this that things started to go south "chronic fatigue-wise". Point being - most people recover from Mono and are fine forever. Just do your best to avoid damaging behaviors, situations, emotions, and lifestyle and its very possible you'll be fine. I know for a fact if these events hadn't occurred i'd be 100% fine right now despite 3-6 months of mono.

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