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]
4 likes, 190 replies
ged77164
Posted
- 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???
leo64913 ged77164
Posted
In your experience, when you get those sympthoms of the virus activity in your body, do you become contagious again? Have you mouth kissed people during these years while you are having the symptoms and immediately after? Have they catched the virus if so?
I'm very interested in experiences about contagion or hopefully lack of contagion with recurring glandular fever.
Thank you for sharing here
kathleenclare leo64913
Posted
leo64913 kathleenclare
Posted
Where you having an episode of weakness and sore throat when you kissed your boyfriend? If you had an episode, was it severe or mild?
Please be more specific about your synthoms and please keep us posted about your boyfriend's illness. I really hope he doesn't catch GF. And if he does, that he does not suffer the recursive version of the disease, which does not seem that common, as many doctors seem reticent to believe that it even exists. Thank you for sharing.
gillian15107 ged77164
Posted
I've been suffering from what I call my recurrent virus for 20 years. At one point I was ill for 10 days every 3 months. I had terrible exhaustion and low mood that I cannot decribe except I knew that must have meant my immune system must have been taking a real kicking. I finally found a sympathetic GP who did a test to show I have anit-bodies for the EBarr virus and that my iron levels were too low - not anaemic but lower than he liked.
After taking iron tablets for 6 months I still became ill with the same level of tierdness but less frequently and my mood was so much better to manage so the effect overal must have helped. I still get ill- 7 weeks off work last summer for what my new GP called a virus, and said that some patients just take a while to recover. I know with my history of illness that it is the same recurrent illness that flared up due to severe stress.
I would advise anyone with this type of illness to get their iron levels checked. Don't settle for an ok reading - take active measures to make sure you get a really good solid higher reading and see if this helps.
samantha51836 ged77164
Posted
Yes! I first contracted glandular fever from a friend almost 3 years ago. I was bed ridden for a week, thought I was going to die and wanted to. Just laying in bed shaking, unable to eat, talk or move. I was in so much pain, but it passed.
Almost a year later I was highly stressed in a job I hated and was excercising way too vigorously. I was also trying to maintain a vegetarian diet for about 6 months - at first it seemed silly to think that lack of red meat was linked to this, I've literally had people laugh at me when I describe the connection- but I think there is one and lots of people online have mentioned it too!
Then I became sick. It took 4 different doctors and countless tests. Misdiagnosed as depressed over and over again. I thought I was going insane. I was constantly exhausted to the point that I couldn't stand for more than 10 minutes. Then finally found a good Doctor who helped me figure out the cause - ebv. It's been about a year and although I'm feeling less fatigued, I feel like I will never get back to my normal self ever again. I think the hardest part is accepting that and not being too hard on yourself. I am my own worse critic and need to just let myself rest when my body needs it.
Previously I was very athletic, outgoing and social, but now everyday is a constant battle to go to work and get chores done around the house. It affects my relationship with my husband. Because I look fine, but unless you have experienced it it's impossible to understand the struggle of ebv.
The worst part now is I feel I have constant brain fog, ever since I contracted ebv I feel I just haven't been as quick witted or intelligent. I feel like I lost half my brain
Luckily I have changed to a job I don't hate and I can sit down for the majority of the day if I need to but I am not as fast at mental tasks. Does anyone have advise to help with that? I eat well and do try to do vigorous excercise twice a week and walk my dog for 40mins every day. I feel like I need to do some brain exercises or take some vitamins to increase my brain power. Any suggestions would be greatly appreciated. Thank you. Just want to also say don't beat yourself up about ebv. You have to love and accept your body as it is. It's ok to be tired 😴
craig07920 samantha51836
Posted
Hi Samantha,
So sorry to hear you've had such a terrible time with EBV / glandular fever. I really sympathise and went through a similarly tough time. But just want to offer some words of hope today because there is recovery, a year into it I was like you starting to feel a bit better but unsure if my body would ever feel the same again. That was 10 years ago and let me tell you that from that second year onwards things were much better and was able to live a much more normal and active life again. It still took a while to feel 100% don't get me wrong but it does come and you will make a full recovery don't want you to worry or doubt that!
In terms of vitamins to help concentration and brain power, good ones are co-enzyme Q10 and B complex - would highly recommend these for sure. As well as taking a good strong multi-vitamins and good levels of Vitamin C also, and possibly an immune boosting herb like oregano or siberian ginseng.
Hang in there and your concentration levels will come back most definitely.
Take care and thinking of you
Craig
vicki37695 samantha51836
Posted
I keep reading over and over everyone's story every day I have a bad day with this virus ,think I got it June last year was only diagnosed January 2017 ,the fatigue and throat problems and now today i feel like Iam going to have a heart attack .i just want too feel better .thank goodness for this forum I feel like you Samantha,you look fine but people don't realise how hard it is to get through a day sometimes.and we are very lucky to have Craig give us so much encouragement 😊😊😊ps my brain fog is terrible,a rude customer at work tonight told me I don't smile enough and live in my own world if only he knew how hard I have to try to even focus some does
craig07920 vicki37695
Posted
Hi Vicki,
I really do understand and empathise with those words, because you look okay to most people, they think everything is okay and that you are well, and because it's not necessarily classed as a 'serious' illness as such, then people think that there's something wrong with you that you can't get over it quickly.
Those peope don't understand Vicki, they don't understand how awful an experience the illness is and how debilitating and life affecting and changing it can be (especially folk like that rude customer - just disregard the views of people like that, they are totally wrong).
Just want you to know that I do believe you will get better Vicki and from my experience you the path that lays ahead after this length of time is much easier than the path you have already been through up to now - the first nine months is definitely the worst and although it still may take a bit of time to recover, you definitely WILL make a full recovery, I truly believe that. And if it doesn't happen right away don't happen, it WILL happen, God will make sure of that!
Take care and thinking of you
Craig
adam39234 craig07920
Posted
hello
?id just like to share my experience with this glandular fever.
?i started getting symptoms late march 2017. it was a slow increase in symptoms but by mid april 2017 they really kicked in. my lymph nodes in my throat flaired up so big that the pain was constant and severe and long lasting. it took the entire of april and may for the lymph nodes to start decreasing. not to mention the fatigue and extreme sickness and severe neck and shoulder pain. april was the peaking point, and may was the symptoms coasting until my immune system started to kick in. so 2 months of severe symptoms, june was similar but not as bad, the symptoms would go away then come back. july 2017 the symptoms were still there but much less and i couldnt beleive what i had gone through the previous 3 months. felt like i almost died. or was dieing a slow and painful death.
i got a bad rash on my legs in late march, and it got worse throughout april, and slowly went away by mid late may.
?at the peak of the lymph nodes swelling it was horrible. and it seemed to only affect the lymphs on my left side of throat, despite feeling the tingling on the right right but swelling on the right side was not noticable.
?its been 4.5 months since the start of the Glandular fever, and despite being a lot better compared to april and may i still feel tired, the odd joint aches, and the discomfort in the left side of my throat. is this normal craig?
?i have been to my dr several times. and he seems to think i am over the virus, but my body is telling me otherwise.
?how long to the throat symptoms last? i mean when the throat was at its worst is was noticably swollen and lymph nodes got so big it feels like it done permanent damage in there. feels slightly enflamed on the left side still
?funny thing was in october 2016 i stopped eating meat and became a vegetarian, only eating fish and a lot of plants. and still dairy. and 5 months later i get GF.
?ive started eating meat again. and am back at the gym now.
?im 31 years old. and feel like the symptoms wont go away, despite being a lot better than in the peak stage of GF. being 5 months into the virus, is what ive described normal?
?
vicki37695 adam39234
Posted
low and fatigued after several months .have you tried supplements ?i found liquid vitamin c to be of a great help which is available from health strores ,I also found (unless it was a coincidence )gluten started making me feel fatigued I really believe the GF made my immune system react to gluten .there were lots of supplements Craig recommended that were very helpful Iam sure they may be of use to you .good luck and hope you recover real soon.
craig07920 adam39234
Posted
Hi Adam,
Thanks for sharing your story and so sorry to hear it has been such a tough 4.5 months for you. I really do sympathise and want to reassure you that what you are going through is a normal course for the virus, despite what doctors say - I used to worry as they always told me it should take 4-6 weeks or 6-8 weeks and then you will be fine, only to find out the reality for myself that unfortunately the tiredness and effects can take much longer.
I went through very similar experience to you by 4.5 months, I felt that the progress was minimal only that perhaps it wasn't the intense feeling of illness but just more a general feeling of illness and tiredness and running fever which wouldn't seem to lift, just a horrible feeling. Let me reassure you that the period you have been through is by far the worst, it might still take a few months to feel yourself again but things tend to get less intense as time goes on but don't panic if it doesn't come right away because full health and full recovery WILL come. I thought it never would for me, but it did given some time - your body just needs time to recover and still needs rest and balance of activity, so don't overdo things if possible.
Vicki's right too taking some supplements can really help, things that helped me include a good strong multi-vitamin per day (immunace is the one I take here in the UK), high doses of Vitamin C (1000mg to 3000mg per day), B complex vitamin really can help your energy levels (as can Co-enzyme Q10) and an immune boosting her like siberian ginseng. These can certainly help your immune system start to kick this thing into good for tough.
And remember - most important of all - you will make a full recovery, I went through exactly the same, horrible months on end wondering when things will change, I know it doesn't help when going through it but hang in there and you will come through the other side, hard to be patient I know but don't panic if it doesn't come right away because it will come!!
Take care and thinking of you
Craig
Mono_too adam39234
Posted
Hi Adam,
Very normal to still be feeling this way, I started to feel better at 6.5 months, still tired but better overall and then I started working more hours and now at 10 months having a small relapse. Craig is right you will start feeling better but don't overdo it as you start feeling better.
adam39234 craig07920
Posted
after reading these posts yesterday i did order some siberian ginseng tablets, as well as turmeric 5000mg tablets. with any luck is helps. ive been taking vitamin b12 nanocelle spray for the past month and it has helped with energy against fatigue. its a good new product by a company called Medlab Limited. The product is in spray bottle with nano particles. its called b12 activated. i have it every morning.
also take a multi vitamin in the mornings too.
still feels like my throat is flemmy not a lot but its there. but it is winter time here in australia.
i am going to UK at the end of the month for 4 weeks.
its good to have come across this page as it has made me feel worried. and given me some thought of luck in the future i may get over it.
i think in younger people like 12 or 16 GF only lasts a few weeks because the body is still growing, but in adults it may be longer lasting because the body has finished its growing. like breaking a bone for example. in children they recover quite quickly, but different scenario in adults.
ever since suffering from this GF my diet has stepped up 5 notches. i always had a healthy lifestyle but its even more so now. eating greens everyday like brocolli, beans, sprouts and so forth twice a day. and drinking mainly water and tea.
i found that apple cider vineger really helped in the last 3 weeks. my skin was getting itchy as in felt like stings every now and then, but since the ACV twice a day that has gone.
The rash i got on my legs wasnt itchy but every now and then felt like a little sting. that was awful. but that is well gone now.
i feel my energy has restored to maybe 60% which at its low was down to 10% it was unbelievable. and despite feeling so low and sick it was hard to sleep.
i joint aches seem to go for a few days then come back, but dont last as long as they did in the peal of GF.
it is strange virus it literally tries to shut down the entire body.
the period of april-june my hair bare grew. and i typically have fast growing hair. but my hair now is growing again which is a good sign.
i lost 4kg by end of june. but now have regained 2 of those kilos.
nevertheless its something that should be avoided as it is the worst sickness i have ever experienced. almost like i was a fine line between dying and living. was very hard to breath in the peak of the virus. i mean i could breath but felt like i wasnt getting sufficient oxygen.
one thing i noticed during the peak of the virus was eating cheese was very bad. for example after eating cheese the symptoms came back just as strong as the day before.
my advice is cutting out dairy during the sickness period. and replacing in with water and especially organic apple cider vinegar with half a lime or lemon and honey diluted in 500ml of water at the start of the day and again before it gets dark.
iwish i had known this at the start of the symptoms may have been a quicker recovery.
and the other thing is i dont know how i got the virus. i havent kissed or been intermate with anyone in a long long time. however i remember in february i was at the gym and i felt a blob of sweat hit me on the forhead. so i am assuming this could have been the point of infection. my dr said it can also be in the air.
will keep updated in a month or so
thanks
craig07920 adam39234
Posted
Hi Adam,
Definitely thinking about you and just want you to know that, the Forum here is good for encouragement and advice, definitely worth keeping an eye on it. I still fully and totally believe in a complete and total recovery for you Adam, without any doubt in my mind - so hard when going through it though I know, just take it one day at a time and don't look too far ahead - each day is enough to cope with when going through it, and keep in your mind that this won't last forever and recovery is happening right now in your body and you will see the manifestations very soon. I believe Jesus will bring healing to everyone here on the Forum, without any doubt.
Thinking of you and hoping for a good day today.
Craig