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

Ears, nose and throat
1

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.

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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

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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?

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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.

5

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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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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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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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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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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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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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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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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I first found this thread several months ago and was so relieved that I wasn't making these symptoms up. Several doctors have told me Glandular Fever can't return, but every year or so I know I get it. Great to get validated. Some other tips:

- Keep your mouth clean. Don't leave your toothbrush near a toilet and change it regularly. You'll soon learn where to find cheap toothbrushes!

- Rest frequently if you are partying / doing lots of sport / working hard. I'm a sports nut and used to get sick every month until I learnt to rest two days a week.

- I couldn't agree more with the 'rest for the first few days then exercise' advice. Absolutely matches my experience. You won't feel like it, but force yourself out to do something vigorous and it will really help.

- Careful not to 'over-act' it. I read this somewhere else and agree: because your symptoms are invisible, there's a temptation to try and make them visible. You don't need to. You know you're ill.

Lying here on my sofa now utterly ruined, like a puppet with his strings cut. But this is day 3 so tomorrow I'm running with press-ups / pull-ups in between. It'll hurt but I can't wait for the results.

Hang in there folks. Hope this helps.

PS - Has anyone found any relation between this and lack of red meat???

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I had GF 13 years ago but have struggled ever since. I have tried to pretend nothing's wrong and push myself through things but I'm at my wit's end and have an appointment with my Doctor this week.

I feel tired almost all of the time, regardless of how much sleep I get and how much exercise I do (I swim competitively and cycle/run). Every little bug I pick up sees my glands swell ridiculously, resulting in painful ears and throat, as well as regular sinus problems. The latest started with very painful, debilitating sinus headache and has progressed to earache in both ears and a painful throat that makes it hard to swallow.

My younger Sister also had GF at the time I did and was diagnosed as suffering with Chronic Fatigue several years ago; she is only able to work around 25 hours per week or she gets quite ill and she has to get around ten hours sleep per night or she's as good as useless.

I'll be interested to hear what my Doctor says as my Sister's originally tried to tell her she was suffering from stress and needed anti-depressants, and it was quite some time before she was able to convince them otherwise.

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I am 35 and i was diagnosed on 9th july 2013 but i know ive had it alot longer than (nearly) 5 mths and also feel like ive had it or something similar most of my life. one thing about this is that i had my tonsils out 9 yrs ago when i was 26 so you dont get the pus filled tonsils. i had an agonizing sore throat, the most painful one i have ever had, and ive had throat infections/tonsillitis every 3 mths so i know what pain is. it also came with tiny speckled dots all over the uvula and still the doctors wouldnt give me any antibiotics, only throat spray which i over dosed on. if i dont have tonsils then theres nothing there to fill with pus so surely they shd have given me antibiotics just in case they did help me as i was at my wits end. to top it off im now about to have my 4th dose of this agonizing throat! i have not even been asked if im ok or experiencing anything else. if i had not of searched the net i wdnt know a thing as all i have been told is that i have acute glandular fever! the good thing is that i have not spent more than one day at a time in day and i have a lil boy who is 4 and half so he keeps me busy and i still go to work too.

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i am 28 i never got ill with glandular fever i caught it at the age of 15 and only today after reading all your posts have i realized what is wrong with me, i have had a dull ache in my throat for years witch makes me feel stressed , i have had pains in my chest i get tired everyday around 2 pm and i have noticed symtoms subside when i exercise i only found out that i had the virus when i was told it was found in my blood that i showed signs of having it in the past i will be mentioning this to my doc ,im concerned but relieved at the same time as ive fort i had throat cancer had camera put down my throat had full blood count the lot ,

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Gracie999,

How did you see the head of clinical immunology? Is that something I can do through my GP or did you contact them privately?

Your help would be gratefully appreciated.

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i went to my gp n said how exhausted i was n she sent me to the nurse for full bloods to b done and it came back with acute glandular fever. ive now had it 6 mths and its no better. in fact im worse. i struggle to wash my hair, put make-up on, put the washing on, hang the washing up on the dryer. its all getting too much. if it werent for my son whos 4 1/2 i wdnt even get out of bed till the late afternoon.

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Sorry about the long post but I thought it was important to share my whole experience.

I found I had glandular fever in November 2013, but this was after months of having a sore throat and just generally feeling awful. I found I would feel a bit better after a few days in bed, but as soon as I went back to work the symptoms would come back again. My first doctor just thought I had a general virus as my glands weren't that swollen (my throat was sore but not as bad as when I've had tonsillitis in the past) so I eventually tried another GP who asked if I'd glandular fever before. I'm 27 and most people have already had it by this age apparently, but the blood test came back positive so at least I knew what I was dealing with. I got my partner to go for the blood test as well as his throat was starting to hurt but it turned out he already had the antibodies so he probably had it when he was much younger without realising.

My GP basically told me to rest and make sure I get plenty of vitamin C. I also took Astraforte which is the herb astralagus, fish oil, vitamin E, vitamin D, probiotics, vitamin B12 and the odd paracetemol. Took even more time off work and ate super healthy (I'm usually pretty healthy but I really upped my fruit and veg and cut out dairy products and sugary treats). I definitely improved doing all of this, but still generally just felt like crap! Had no energy (as you'll know it's a different feeling to just not getting enough sleep - it's exhaustion on another level!) and doing the smallest tasks became really overwhelming. I then started to feel pretty down about the while thing and was worried about whether I'd feel better by July when I'm getting married. Even going for a coffee with a friend seemed like too much effort so I hardly saw anyone for quite a few weeks.

Anyway here's the good news - I'm now feeling amazing again! I read about taking high doses of vitamin C. Although my GP had mentioned vitC she never spoke about how much I should be taking. I was therefore just taking the normal dosage as instructed on the packet. The problem is that this dosage is only really enough to stop you from getting scurvy, which is pretty impossible to get unless you avoid all fruit and fruit products. To get any benefit from vitC when you're immune system is stressed you have to really up the dose. I started chowing down on vitC tablets like they were sweeties and within 24 hours I was feeling SO MUCH BETTER! There is something known as the vitamin C flush which happens when your body has reached its maximum intake of vitC. Basically it results in a bit of an upset stomach, and once you reach this stage then you need to lower your dose. I was taking 3g of vitC every hour as chewable tablets which are made up of ascorbic acid and sodium ascorbate. The sodium ascorbate makes it a bit easier on your stomach, but you'll still experience the 'flush' at some point. If you're ill then you will be able to digest a lot more vitC than someone who is well.

After a couple of days of doing this and drinking lots of water (vitC is a diuretic so it's important to keep up your fluids) I got sick of having to chew the tablets. I started swallowing them whole with water and within a day I was feeling like crap again. I don't know why but at the time I didn't associate the two and I just thought that maybe I had to up my dose slightly. I started swallowing 4g every hour which still had the same effect on my stomach (slightly 'looser' if you know what I mean) but I wasn't feeling any better from it. I think this is because without chewing the tablets they weren't being digested properly and were pretty much just being passed through. I then purchased ascorbate acid tablets which you dissolve in water so again I didn't have to chew. but these gave me such an bloated stomach that it wasn't worth it.

At this point I happened to read about liposomal vitC. It's basically vitC encapsulated in a fat (liposome) which makes it much easier for your body to absorb. Normal vitC can't be fully absorbed by the body. In fact, only 9% of the vitC you ingest is absorbed with the rest being flucshed out. Liposomal vitC is absorbed at over 90%, making it ten times more powerful!! You can make you own liposomal vitC and there are loads of videos online about how to do it (you need an ultrasonic jewellery cleaner and some other bits and pieces but once you've got all that it looks pretty easy to make), but I decided just to purchase the real deal to see if it helped any. I paid $40 (AUS) for a box of 30 packets from a New Zealand distributor and started with taking 4g a day (spread throughout the morning and afternoon). After a couple of days I then dropped down to 3g and am now taking 2g (it's been less then two weeks since I started). Compared to the 3g I was popping every hour with the chewable tablets, this stuff really is absorbed better! After the first week I was better but I happened to have a horrible cold that week so it was hard to judge. By week 2 the cold was gone and I was feeling 100% again! I've ordered more liposomal vitC and am still taking 2g a day, once before breakfast and once before lunch. FYI I found that taking it later in the day kept me awake a bit at night, so I now make sure I don't take it any time after lunch.

I've also noticed that my sensitive dry skin is looking a lot better just now and that's because vitC produces collagen in your body, so it's probably a pretty good way of treating wrinkles too! The most popular story about liposomal vitC is that a man in New Zealand recovered from swine flu after his family put him on it. He was on life support and the doctors were about to switch it off but the family pushed to have him on intravenous vitC. Long story short he's made a full recovery!! I's also read about cancer patients taking during their treatments to help their immune system and energy levels.

For a couple of dollars a day I'm pretty excited about this stuff at the moment and am going to keep taking 2g. Maybe in a month or two I'll drop down to 1g, but this is definitely something which I plan on taking every day for the rest of my life. It'll be interesting to see how many colds and flus I get over the next year as I'm usually quite susceptible to these things. I'm not taking any of my the other supplements any more, just this.

If you're suffering from GF then please give it a go!! And make sure you're eating well. Processed foods and too much dairy and sugar will make anyone feel like crap.

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Well I read the last post and it offers some great advice even if it isn't solely about recurring glandular fever, I'm going to give it a try.

I had glandular fever really badly when I was 14, I'm now 62. As an interesting aside it is now believed that although one can carry the bipolar gene, it often takes a serious illness or major trauma to bring it on. After many years, my doctor traced my onset back to Glandular Fever. I too was told that the illness could not recur despite the fact that in my own core I knew full well that it did. It was only when getting yet another recurrence yesterday that I decided to check on the web to see if I was alone and hallelujah, I found this thread.

I wanted to respond last night, but I was far too I'll. I've been in bed all day shivering and sweating. Glands up like eggs and every bone in my body aching. I've now broken the fever and just feel as weak as a kitten.

It has always amazed me that doctors say the disease cannot recur. After all, if that is so, why do they not allow you to donate blood if you've had it?