Living with Recurring Glandular Fever Many people who c...

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Living with Recurring Glandular Fever

Many people who catch glandular fever (Epstein-Barr virus) recover completely, but for a significant minority, like me, the virus hides from the immune system. I believe that this ability was discovered in the late 1960s. I heard of it in a BBC science programme in the early 70s, and immediately recognised my situation.

I caught glandular fever (without complications) in spring 1967 when I was a youth. Those who are affected by recurring symptoms, will recognise my case, where the symptoms receded imperceptibly slowly. It took about 9 months from being infected before I felt more or less normal again - for a while.

I pass on my experience of coping with this condition. There is bad news and good news.

The bad news is that the symptoms recur throughout life - that is for those who have difficulty clearing the original infection. A cure might emerge, but I am assuming that this will not happen. The good news is that, in time, the symptoms become gradually less of a problem.

The bad news is that one needs to adapt one's lifestyle in order to deal with this. The good news is that one can live a normal life. There are many with other lifelong conditions, who are far worse off.

Any virus illness (cold, 'flu) will trigger the symptoms. Something as common as catching a cold runs as follows. One feels unwell (exhausted), with no symptoms. About 2 days later, the cold symptoms start, accompanied with swelling of the glands in the throat and/or cheeks. The swelling is not very noticeable to others. One has a slightly raised temperature, and feels quite ill. After 4 to 10 days, the cold symptoms and swelling subside, but the feeling of exhaustion remains. This can last 4 to 6 weeks, or 6 months after a bout of 'flu.

How can you cope? There are a number of measures.

1) Smoking exacerbates the symptoms. If you are a smoker, you will be one of those who find stopping smoking relatively easy. You will soon learn to avoid smoke-filled places.

2) Should the symptoms start, treat as for a cold, or 'flu. You will feel exhausted, and a good thing to do is to get a lot of sleep.

3) It is worth getting a 'flu vaccination, if you can.

4) Exercise - you won't feel like exercise, and it is wise to rest while the cold symptoms are there. Once they are gone, and the feeling of exhaustion remains, that is the time to resume vigorous exercise. I think it might be the raised body temperature which helps to fight off the symptoms. In the case where you go to the gym, you will have to force yourself against the feeling of exhaustion for the first time, and even the second time, but by the third time, you realise that you are much fitter. The exhaustion will go. Regular exercise helps ward off the problems, and the fitter you are, the better you will manage.

5) Avoid catching colds. You will find that you have become especially susceptible to colds. There are many things involved here, from a good, varied diet, a daily multivitamin/mineral tablet (don't overdose), cough sweets in the bus/train etc.

The best advice, and perhaps the most difficult and lifestyle threatening, is to follow what (great) grandmother told you, "Wrap up warm!" Think how she would say, "Put on your sweater/scarf/hat/woolly socks before you go out!" You think. "It is not cold outside". You know it isn't "Cool", and you don't want your friends to laugh at you.

If the summer weather is really hot, you can get away with fashionable wear. Otherwise, the bad news is that keeping warm maybe "uncool" but if you ignore this, you will suffer. Ideally, you should keep on the verge of perspiring, and if the surrounding air is fresh and cool, that is the ideal. Avoid stuffy environments. Avoid becoming too hot, sweaty and wet, and then getting chilled. However, if you can arrange to change into dry clothes and not become chilled (as when you go to the gym), all well and good!

I found these lifestyle adaptations very unwelcome. You will have to find your own way to cope. Thinking of these matters will help, and you can lead a normal life, with bouts of extreme exhaustion from time to time. Take comfort in that these will become less severe, and maybe less frequent as the years pass. Otherwise, you are quite normal. You can achieve what you are capable of intellectually, and physically. Face up to the occasional difficulties, and be determined to succeed with your life. Epstein-Barr will not prevent you.

[i:b1201028bc]This message was automatically imported from the original Patient Experience[/i:b1201028bc]

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  • Posted

    At last! I am not alone. I had glandular fever about 15 years ago. I am still suffering now. Sometimes I feel really perfetic as I'm nearly always tired. I will definatly be trying out your advise. Thanks :D

    [i:5776690659]This message was automatically imported from the original Patient Experience[/i:5776690659]

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  • Posted

    I had glandular fever around 12 years ago and spent the next few years with frequent bouts of fever, sore throat, sinus problems and exceptional tiredness. I did find that managing stress and forcing myself to rest helped some but I had a nasty time for a few years with low-grade fever, stiff neck, one nasal polyp, and exhaustion which, over time, was wearing in the extreme. This caused me to be on antibiotics almost on a full-time basis for 1.5 years until the polyp unexpectedly was blown out and two high dose 21-day courses of antibiotics seemed to fix things for me. At least for a time ...

    I then lead a fairly normal (but careful) life for about 6 years. Nearly *all* of your suggestions were things I found myself naturally following based on my own observations and a strong fear of becoming ill again.

    Now 12 years on, I've had another spell of extreme tiredness which has been up and down for the last 5-6 months. I've been on antibiotics again for a suspected sinus infection which seemed to make me feel better for 5 days. This was followed by severe sore throat and ear pain, low-grade fever, neck stiffness, swollen glands, dizziness, positional headaches and fatigue. My GP now thinks I have a glandular fever-like virus and I am very worried about how long it will last this time around. It is indeed difficult maintaining a normal life and I worry about my ability to keep up with my job if this lasts long.

    Can this be linked to the original bout of glandular fever 12 years ago? Or is it bad luck that I've picked up another strain?

    [i:b8eef7c92b]This message was automatically imported from the original Patient Experience[/i:b8eef7c92b]

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  • Posted

    I have to say that not everyone will experience reoccuring symptoms. It is important to be positive...it can be easy to play the sick role with glandualr fever. I was diagnosed in summer 2008 and it took 8 months from start to finish to feel normal again. Now bearing in mind I work in a hospital and regularly stick my face in front of other people's mouths and spent 3 weeks in India 5 months after diagnosis I have had nothing more than a seasonal cold and the occasioanl sore throat.

    I smoke from time to time - no problem. I also drink with no issues. Antibiotics weaken your immune system - it changes the flora and fauna of your gut, not to mention that glandular fever is virus based and therefore, no antibiotic wil help.

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    • Posted

      I must write here to offer some encouragement to the people who are reading and feeling worried when people say glandular fever recurs continually. I had glandular fever 10 years ago and I thought I was never going to feel better, it did take me a full year to start to see some progress and probably a couple of years to start to feel like myself again but I did get there. Most people do. Remember probably over 75% of the population have this virus dormant in their system from either getting it as a child or an adult, but most people are able to live healthy lives once they get by the horrible and sometimes lengthy period of the initial illness.

      I would encourage people to take herbs and vitamins that improve their energy levels and immune system, things like B complex, co-enzyme Q10, siberian ginseng, echincea, that kind of thing.

      And I do want to say to everyone - please hang in there and don't worry - there is light at the end of the tunnel. I never thought I would improve or get over it, but it happened gradually and eventually. You will get there. Just hang in there, it's an awful illness but you will get there.

      Take care

      Craig

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  • Posted

    So how does this differ from Chronic Fatigue Syndrome which seems to have a very similar onset and also lingers on with the same symptomns?
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  • Posted

    thanks for advice. i have hypothyroidism which makes me feel very exhausted and 'foggy' brained. i am being treated for this but my symptoms persist along with the flu type symptoms sometimes with swollen glands as mentioned above. i was referred to an endocrinologist to find out why i feel this way whilst being treated and all she could find was that i had caught glandular fever when i was younger without knowing. like someone else mentioned it could be alot worse but it is very frustrating at the time because i cant do half the things i normally do and with a home, a husband and 3 kids to take care of its just not convenient! i sympathise with others with sme problem and wish you all the very best.xx
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  • Posted

    I was diagnosed with chronic fatigue syndrome 24 years ago. Only recently did someone send me to the head of clinical immunology at the University of ***********, who diagnosed a primary immune deficiency that I've probably had since birth, but which got worse as I got older. I'm also now seeing a virologist, who found high levels of both HHV-6 and CMV. The theory is this: we all carry around lots of viruses. But in some perhaps significant percentage of chronic fatigue (or ME or glandular fever) patients, there is an underlying immune deficiency. In normal people, the virus tries to activate but is stopped by antibodies. In those with immune deficiencies, however, there is a lack of antibodies, which means the viruses just keep reactivating. I've said for a long time that it feels as if I've had mononucleosis for 24 years -- and it turns out that I have had just that.

    To chronic fatigue patients: please get your immune function tested, and not just the standard annual-physical immune tests. Ask for tests of IgG, IgM and IgA. Ask for natural killer cell function tests. There is treatment for these deficiencies. I'm about to start. Here's hoping...

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    • Posted

      Hi Gracie999, 

      I have seen your post and I know it is over 1 year ago, so hoping you will still recieve this comments.

      I am going through the same issue; I have had what they say is infectious monoucleosis for the last year. I am told my body will just get rid of it by itself, but i have just had another reoccurant attack, and feeling the fatigue as worse as ever. 

      I was wondering what infectious disease they diagnosed you with?

      I was also wondering how you got to referred to the head of clinical immunology?

      I have been going privately with a rhemutologist and seen an infectious disease specialist that advised that althought my igG levels were extremely high, that there was nothing that they could do?

      Should i refer myself to a virologist? 

      Please could i ask what treatment they have decided to go with for you?

      I hope you see this.

      Thanks

      Nicole 

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  • Posted

    I have this exact issue and am always sick sad thank god i am not insane.

    I had glandular in 2007 and still have pretty bad symptoms. It even showed up in my blood test this year.

    Doctors continuously tell me 'no you dont still have it' but i know Its here cause I feel the same symptoms.

    I am currently bed ridden with a cold, thats not normal.

    My symptoms get much worse upon drinking and having fun and I am only 20 of course I want to have fun!! but due to this condition i only do occasionally.

    Someone please give me some extra tips - I already take every multivitamin under the sun, eat a healthy diet and get 8 hours sleep a night! I have also developed sever stomach issues as a result of the condition.

    If any experts or fellow sufferers have tips or explanations I am open to everything!

    Bronte

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    • Posted

      Bronte :

      Re. "severe stomach issues" you may have a sub-set/related disease ( to Guillian Barre Syndrome ) called CIDP/chronic inflammatory demyelinating polyneuropathy. I have been ill with flu like symptoms going on 9 months now ( many symptoms ). A primary symptom is that I cannot eat without taking ratio lenotec first because I get pain and discomfort in my left side behind my lower rib cage ( my colon ) and I have difficulty passing stool through my system and I'm not constipated. This has been investigated by a colonoscopy/endoscopy which showed food deposits in my throat. Moving on to a nuclear test to see how food passes through my system.

      Bowel dysfunction is one of the many symptoms CIDP. Can start with a virus. It's an autoimmune disease related to Guillain Barre Syndrome. CIDP is the reocurring counterpart of GBS.

      This I believe started as a virus in Aug. 2005 and has ocurred again only this time much worse, in my case. First time it took me about 6 months of suffering, this time I'm still not over it, 9 months now. The first time it left me with damage to my legs called peripheral neuropathy. This time the neuropathy seems to have moved to my trunk. Working to get to see a neurologist who specializes in CIDP. Unfamiliar neurologist may suspect MS, they did in my case back in 2005.

      If this is what I have it won't be a welcome diagnosis but at least I will no longer have to search for an elusive diagnosis and/or cure. And it is just a disease you have to live with. Apparently bouts throughout life. There is some intervention when you recognize you are suffering a bout, not exactly sure precisely what the intervention is yet.

      Consider investigating this possibility, CIDP.

      Cathie43459

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  • Posted

    Oh, thank God I am not alone. I am 50 years old, and I have had 4 bouts of this in the past three years. Each time, it lasts about 6-8 weeks, where I can barely get through the work day, barely make it home, and end up on the couch for the rest of the day and into the night, with just enough energy to make it to bed.

    I don't smoke, don't drink, exercise regularly, and eat a very healthy diet (even make spinach smoothies - yuk!), yet this monster keeps rearing its ugly head. My doctor gives me a blood test, confirms that I have it, and says, "You know what to do....plenty of sleep, be careful of the spleen, and take it easy." I am going next week to see an endocrinologist, and hopefully they can help me to figure out what is making this act up so much! I know there are others who have diseases much worse than mine, but I am having trouble just living my life!

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  • Posted

    I dont know if mine is recurring or not, I can only assume it is due the having a flare up which started two days ago. Apparently I had Gf When I was a kid but I dont ever remember having it. Around 18 mths ago I started experiencing bad fatigue but I put it all down to my weight. I lost 3 stone once and through out my life I have never experienced any kind of energy. Ive got other health issues which cause dizziness/fainting feeling and I have an undiagnosed issue with one of my eyes which also doesnt help. On top of it all I was told I have acute glandular fever 4 wks ago and had two blood tests to confirm the result and thats it! No-one has spoken to me about symptoms or to check up on me. I have had to do my own research and its hard to find all the info I require. Can it be spread via a sneeze? Can I be around new born babies? Should I be working with the general public? What about my 4 yr old son? He seems ok but if hes a carrier what do I do? Can you get a rash with glandular fever asy friend has been told her son has it all because of a rash but I havent seen any evidence of a rash on the net. Any help would be helpful. Thanks everyone.
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    • Posted

      Hi Romana

      Glandular Fever can be spread with a sneeze.  The incubation period for the virus before symptoms appears can be 2 months. It is possible to get a rash but not everyone does.   Docotors usually sign you off work for around 2 - 4 weeks but mainly due to the unpleasant fatigue symptoms.

      I am not sure about your son, but if he has been around you sharing cuddles (and sneezes) or if you have shared any crockery or cutlery with him, he potentially may have the virus or be a carrier.  Best to check this with your Doctor or surgery nurse.

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  • Posted

    Hi, I had glandular fever in May this year and I was back in work within two weeks and have only recently got back on full hours. I was wondering does glandular fever affect your immune system afterwards? I don't often get ill and since I've got back I've had colds and now I seem to have picked up a stomach bug which is really rare for me... I'm 20 by the way.. Thanks
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  • Posted

    Roama, I got a severe rash all over when I had it. It disappears within a few days although it does leave marks which can take a bit longer to fade. I think mine took a couple of weeks. The doctor said it was possibly an allergic reaction caused by the virus which could be triggered by something I don't normally react to... I was prescribed strong antihistamines and used chalamine cream. Hope that helps!
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