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
GAilanne9 Guest
Posted
craig07920 GAilanne9
Posted
Craig
jean45627 Guest
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craig07920 jean45627
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Hi Jean,
So sorry to hear you have been suffering with bouts of exhaustion, that is so difficult to deal with. Maybe worth taking some vitamins and herbs to help with this, B complex and Co-enzyme Q10 are good for energy levels and mental concentration, as is Gingko Biloba. Also a good strong multi-vitamin per day can help and getting enough Vitamin C and Vitamin D.
Hoping you feel better and so sorry to hear you're under a lot of stress, that can certainly take a lot out of you and have an impact. Thinking of you and believing things will get better in Jesus' name.
Take care
Craig
jean45627 craig07920
Posted
Thank you for your reply and advise I have been on statins for many years, also been taking Q10 daily, after reading in the news paper, that the USA doctors recommend patients take this when on statins. I will start taking a vitamin B12 as kindly suggested by you.
Just to know someone is there makes me feel better.
God Bless
Jean
craig07920 jean45627
Posted
Craig
helen01101 jean45627
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I am relieved to find this, as i seem to have similar problems. I had GF at 23, followed in rapid succession by recurring colds, depression during pregnancy and then severe tonsillitis. After my tonsils were removed I got fewer ENT viruses, but since 2014 I have been getting more again. I am now in menopause, which may be a factor, and have gone through lots of life changes in the last three years, such as children leaving home, moving myself, husband retiring and dependent parent coming to live nearby. I have a good diet, don't smoke and don't drink much, get regular exercise and take supplements, but nothing seems to help. GP blood tests show nothing wrong, yet I seldom feel well and get a cold a month each winter, or worse. Last year I had a virus that lasted nine weeks, followed by fatigue and then anxiety attacks. As I don't look ill I feel guilty for 'letting the side down' when I have to withdraw from activities because I feel so low. My main problem is not knowing how much to rest and how much to carry on with normal life.
craig07920 helen01101
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Hi Helen,
So sorry to hear you've been struggling and so drained and under the weather so often. Really do sympathise it's a horrible thing to go through. It sounds like you're doing all the right things to help yourself too in terms of diet and exercise and supplements, etc. You probably already doing it but B complex and Co-enzyme Q10 can be really good for energy levels, as well as the usual stuff like a good strong multi vitamin and extra Vitamin C and D (especially in the winter).
It's so hard when as you say when people think you look fine so you should be fine. You just need to listen to your body and take rest when you are able to. All the stressful events in your life you've had to go through definitely contributes to it all, so anything you can do to help with relaxation and the nervous system (like the B vitamins and things like Evening Primrose Oil also great I think).
A good book that helped me mentally as much as physically after the virus was one called 'Viruses, Allergies and the Immune System' by J a n d e V r i e s (spacing that out but every time I write his name normally it blocks the message going through!).
Thinking of you and defo the forum here has some great people on lots of different threads giving advice and support - I do believe things will get better for you Helen, hang in there. This is going to be YOUR year of recovery.
Craig
georgie111999 Guest
Posted
Hi there,
reading this forum was very reassuring as I did not realise GF could occur (doctors told me it wasnt possible) and that I am not alone. Here is some of my background with the illness and how I am suffering now : I was diagnosed with glandular fever aged 14 and spent around a month severely ill and pushed myself to get back to school/live a normal life again. Because I never allowed my body to recover, I spent the next 5 years catching every virus I came into contact with and experiencing symptoms of CFS/ME (but I am not diagnosed with CFS).
I am now 19 years old and I believe my glandular fever may be recurring. I feel the exact same levels of exhaustion, swollen glands lymph nodes, sore throat, sleeping for 12 hours at a time, brain fog as I did after first coming into contact with GF. Its as almost as thought when I catch a normal cold/flu virus (which on average will be once a month), I also get symptoms of glandular fever which flare up. I have visited GPs throughout the 5 years and have mentioned the possibility of CFS but it seems doctors do not want to acknowledge it. I've had multiple blood tests done over the years and more so recently which do not show any signs of abnormality.
Its got to a point where my exhaustion and constant flu like symptoms have got in the way of my uni work and I have been off now for a significant amount of time. I've spent the last month in bed and when I have pushed myself to go out I get more ill. It's making me very depressed and have little self worth as I'm not able to live my life the way people my age do. Not having a firm diagnoses has also affected the way people react to my illnessess- often not believing me or assuming im just lazy/dont get enough sleep at night.
arian89091 georgie111999
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hi georgie111999
sorry to hear about your long struggle with the illness, i can relate to everything you said especially the fact that people don't believe in the recurrence of the illness.
one thing that made me certain was when my ebv blood test came out positive, which is not supposed to happen once you recover the first diagnosis.
I've tried many remedies during the years.
and the only effective one is large doses of vitamin c, which i take as liposomal vitamin c, you can easily find it on amazon or you can make your own just type the name in youtube.
living a stress free life and having plenty of rest helps a lot but being a college student my self i understand that makes it very hard.
anyway i hope i was helpful
don't loose hope
craig07920 arian89091
Posted
Hi Georgie / Arian,
Really feeling your pain with this, I am thinking about you both and Georgie so sorry to hear it's been such a difficult time - I do still believe you will get better, sometimes this thing can work its way out over a few years, it was 10 years ago since I had it and the first 2 or 3 of those years of recovery were shaky, but things did get better.
Don't beat yourself up Georgie, there is a reason for you having to rest more - you're not at all lazy you've been trying so hard I can tell that - God sees that and I believe that things will get better for you because of His healing - hang in there and just focus on one day at a time.
Craig
adam39234 georgie111999
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craig07920 adam39234
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HI Adam,
I was exactly the same as you, it took me about 10 months to see a real turning point, but then full recovery still took a bit of time after that and it still has its ups and downs - things definitely do continue to get better from here, without any doubt - the second year your body is still getting used to recovery but each month things will improve and the lapses and down periods become less, until your body just doesn't feel the effects any more at all and you can cope as normal.
Sounds like you're doing all the right things with vitamins, exercise, etc - hang in there you will still improve further even from where you are right now!
Craig
craig07920 Guest
Posted
Craig
ebvreactivated craig07920
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To check for ebv virus. But I’m not sure if the tests are reliable or not. They often show negative.
Thanks
craig07920 ebvreactivated
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Hey Christine,
It must be so frustrating not to have a firm diagnosis I know. I had countless blood tests and it was only in the first one at the start of the virus that it showed positive for EBV, all the other times (except one minor relapse a couple of years on) showed negative, even though I was still suffering the symptoms. I think they can tell from blood if you've had past EBV infection, that's maybe worth asking the doc.
I know the feeling of it being frustrating for blood tests to show nothing, even though that's a good thing - you just want some explanation sometimes, but please do take heart if nothing is shown, it IS a good thing and does mean after this length of time with these kind of symptoms that EBV or similar virus certainly sounds like a potentially likely cause.
Just to reassure though most important of all that this DOEs get better and I'm fully believing God will bring healing and in your recovery Christine - hang in there I know you must be so tired and weary after a year. If it is EBV, this first year is BY FAR the worst and the next year will be a cake walk in comparisson.
Craig
ebvreactivated craig07920
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Thank you for your kind words. Yes, it’s been a tough year. I hoped to get better in 2018 but nope. Recently I’d dealing with bruises on my legs and dark circles under eyes. I hope we all get better soon! I also believ that there is some bacterial infection behind this.
craig07920 ebvreactivated
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Hey Christine,
After about 9 months I started to get terrible joint aches and bruising as well, I didn't understand it all it was really tough, but it settled down after a few weeks and actually that was the time just after that I started to really recover and make progress - maybe this is the virus making one last push before your body gets on top of it for good, really hoping so and hang in there. You will get better I truly believe that!
Craig
ebvreactivated craig07920
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I have one more fear. That’s my low grade fever that doesn’t leave for almost 3 months. It flactuates between 37.1-37.6 the only time it went down to 36.9 is when i was on antibiotics for 10 days. And even then it was not my normal temperatures. All my life i had run 36.3C. I feel hotespecially around my throat and cheeks area. I wonder if this is a common symptom with EBV? As I am so scared. One hospital nurse told me carelessly that it might mean you have cancer
craig07920 ebvreactivated
Posted
Hey Christine,
I had low grade fever CONSTANTLY throughout the virus, other symptoms would come and go but this persisted right throughout - let me reassure you that it does lessen in time until it completely disappears. It won't always be this way - it sounds like that nurse was scaremongering because this is a common and classic symptom of mono. Of course always worth checking with the doc, hopefully they won't scaremonger so much and give reassurance.
Craig
ebvreactivated craig07920
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Thank you for keeping in touch with people who suffer from the virus
Christine
craig07920 ebvreactivated
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Hang in there Christine, I know it's so hard because I felt exactly the same way. Just remember you WILL get through this and things DO get better!!
Craig