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
skippermongoose Guest
Posted
Hi i was first diagnosed with GF around the age of 18, i suffered with chronic fatigue for about 2 years afterwards. Since then my health has never been the same, whenever i get ill my glands and tonsils always flare up. In october of last year i caught the flu and since then i have continued to feel unwell, it seems to have triggered all the symptoms i experienced when i had GF the first time. I have especially suffered with extreme pain in my spleen area on and off since this time along with fatigue, nausea, swollen glands and body aches. I've been to the docs and had blood tests done and a scan on my spleen but nothing has come back to indicate that there is anything serious going on, the advice seems to be just to rest and you will start to feel better etc. It's incredibly fustrating, i lost a good part of my 20's due to chronic fatigue after GF and i really feel my health has never been the same since. It's good to find forums like this where other people understand what your going through.
craig07920 skippermongoose
Posted
HI Melissa / Skipper,
So sorry to hear about the terrible time you have had over such a long period with glandular fever and it's after effects. It's so horrible I know. Melissa I know it must be hard with a family and everything, if you can try to find some time to rest during the week and take some good vitamins / herbs, including a good strong multi-vitamin, for energy B complex and Co-enzyme Q10 and immune boosting herbs like siberian ginseng, echinicea or oregano. For your nervous system, things like turmeric and ginger root can be really good too I believe.
Just want you both to know that I do believe that despite these horrible times, there is still hope and recovery for you both, and trust in God because He will most definitely help and can bring healing and good health back in your lives. I believe that will happen for both of you, hang in there and thinking of you.
Take care and message any time
Craig
Melissab1985 craig07920
Posted
Thank you for the advice Craig. . I will Def give all that a try and see if it makes a difference. I'm going to try a healthier diet, I do eat fairly healthy already, but going to do a very strict diet for a while. along with a light exercise plan, and see if that makes a difference with the constant stomach issues too.. hopefully all of this combined will do the trick for my nervous system and stomach, or at least make it better. I'll take anything at this point.. I'm going to try this for a few months and I'll check back and let you know how everything is going. Thanks again!!
craig07920 Melissab1985
Posted
Hi Melissa,
Good luck with all that, of course please do remember I'm not a doctor or anything, it's just my own experience of some of the things that have helped me!! Remember just to check when taking vitamins and things that not exceeding daily maximum doses and that they don't interact with any other medication or anything, then generally should be safe and good to go with that.
Just hoping and believing things will get better for your Melissa - it's such a horrible thing to go through, noone can really understand unless going through it, but remember there is hope and WITHOUT ANY DOUBT you WILL get better and make a FULL recovery - that is going to happen I truly believe - and even if it doesn't come right away, don't panic because it will come.
Thinking of you and hoping for a good day for you today.
Craig
mickolachi Guest
Posted
Hi
My wife had GF when she was 15 or so, about 15 years ago. Since then, she seems to randomly get sick without any specific triggers.
Her symptoms are flu-like, must stay in bed for 3 or 4 days, no energy at all. It happens between every 4 - 8 weeks.
When she was pregnant, with both of our kids, she didn't get sick like this at all. Doctor's have experimented with this by trying to simulate the hormonal changes her body would go through in pregnancy, but it has not stopped the sickness.
Most doctor's have told her that Dairy and Gluten are allergens, we have completely cut these from her diet, but still she gets sick, leading us to wonder if she can actually enjoy different foods again without any reaction regardless.
It's a horrible condition as she feels like she's going crazy, and can get very depressed in the middle of it.
Read about the vitamin C within this read and am hoping that this can help her recovery time.
As she gets older I have not seen any improvement on it, apart from when she was pregnant, but gladly it hasn't seemed to get any worse.
We've tried doctor after doctor, chinese or herbal medicines, hormones and other drugs, we even looked at getting surgery to remove something from her body that they thought was the cause - it didn't sound promising.
We live in Australia. This thread is the first time I've seen anyone else have similar experiences. I'm so glad I've found it.
Mick.
craig07920 mickolachi
Posted
Hi Mick,
Sorry to hear about the struggles that your wife has been going through, it must be so frustrating and awful to deal with. Just want you to know I'm thinking about you and believe there can and will be good health ahead for your wife, despite everything.
Vitamins and herbs can certainly be good - a good strong multi-vitamin per day (I use Immunace here in the UK) can only be helpful, as can Vitamin C in high doses (1000mg to 3000mg per day), for fatigue, mood and nervous system definitely B complex vitamin supplement and Co-enzyme Q10, and immune boosting herbs like siberian ginseng and oregano have helped me over the years.
Just with you saying you live in Australia - and I know it's a more common form of treatment there than anywhere else in the world - something that I get regularly and has worked wonders for me is 'Bowen Therapy'. It's a very natural and relaxing thing, totally uninvasive and at the least does no harm, it has helped me with all sorts of things from sciatica to low energy and pain, etc - definitely worth a try for your wife, I would highly recommend it!
Hoping things settle down and thinking of you - and remember there is still hope today for your wife to feel free and in full health again, I truly believe that God will help in that respect!
Take care and hang in there
Craig
vicki37695 mickolachi
Posted
I too live in Australia and like your wife I still have bouts of fatigue but usually about every 2 weeks ,I have found liquid vitamin c helps as it absorbs into your system far more quickly .its expensive but well worth it .i too am so grateful for thi site it's so comforting to know we are not alone .
craig07920 vicki37695
Posted
Hoping you are feeling okay Vicki and thinking about you - hoping these bouts of fatigue can ease and I believe that recovery is happening and you will feel in full health again, without any doubt - hang in there.
Craig
vicki37695 craig07920
Posted
Thanks Craig,you are always so thoughtful and such an inspiration.just went through another bout of fatigue for a few days ,just to let people know it is a liposome vitamin c and is available from health food stores and some chemists will order it in and must be taken on an empty stomach.I really do believe too that for some reason GF has made me gluten intolerant as well and I think this could be playing havoc with my immune system at times causing fatigue as well .lovely to hear from you as always hope you are well 😊😊
craig07920 vicki37695
Posted
Thanks for such lovely and kind words Vicki, really has brightened my day!
Just want you and everyone on the forum to be well, don't want anyone to be suffering with this horrible virus. I remember how badly it affected me and you are so right it plays such havoc on your whole body and system. Really hoping the bout of fatigue can pass over and you feel stronger again - remember every mini relapse like that is helping your body get to grips for the future, so there is some positive it in even though it doesn't feel like it!
Definitely consider taking a B complex vitamin per day if not already doing so, like a B100 complex of B50 complex - that will help with fatigue, as can Co-enzyme Q10 which they sometimes call 'the spark of life'.
Thinking about you Vicki and lovely to hear from you too - hoping for a good day for you and still fully believing in your total and full recovery from this virus and the horrible lingering effects.
Craig
nicky45274 Guest
Posted
2. What steps should I take to make this virus dormant. ?
3. I am not married yet. But can it pass to my child ?. Please help.
craig07920 nicky45274
Posted
Hi Nicky,
Really want to reassure you about EBV, it is the virus that causes mono / glandular fever, but in no way is it life threatening or will cause it cause cancer to you or the vast majority of people, I know you can read that about certain diseases and I went down that road too and it makes you worried but honestly - think about it 75% of the population of the world are infected with EBV, most get it when children and don't feel the effects, but when you get it a bit older it causes mono / glandular fever. I am no medical expert but as far as I know it is passed on through saliva, which means it's difficult to pass on not like an air-borne virus or anything like that, that's why they call it the kissing disease sometimes!
Best advice really is just to rest, it's a nasty virus and requires plenty of rest and to remove stress, take some time off if you can. You will recovery from this, but it can take a bit of time sometimes so don't panic if it doesn't come right away - most sites say 4-6 weeks or 6-8 weeks but it can be longer for some, but key thing to remember is that you WILL get better and you DON'T have anything really serious, albeit it's such a horrible virus to go through with not nice symptoms.
Also good to take a good multi-vitamin per day too, and B complex for energy levels, also Co-enzyme Q10 is good for energy levels. High doses of Vitamin C (1000mg to 3000mg per day) and an immune boosting herb like echinicea or siberian ginseng can be really helpful too. These can really help boost your immune system and help your body cope with the virus.
So key thing is, try not to worry! It's hard I know when going through it, but you will make a full recovery and full health is ahead of you.
Take care and remember - plenty of rest!!
Craig
rosanna27156 Guest
Posted
kayleigh21018 Guest
Posted
Mono_too kayleigh21018
Posted
I had low levels of vitamin D, so am taking that and drinking green tea as an anti inflammatory.
kayleigh21018 Mono_too
Posted
Mono_too kayleigh21018
Posted