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.
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4 likes, 190 replies
Guest
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[i:5776690659]This message was automatically imported from the original Patient Experience[/i:5776690659]
Guest
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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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Guest
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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.
craig07920 Guest
Posted
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
Dale
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Guest
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Gracie999
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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...
nicole08475 Gracie999
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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
bronte
Posted
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
cathie43459 bronte
Posted
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
Imzadi
Posted
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!
Roama
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jacqueline22799 Roama
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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.
jo_LH
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jo_LH
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