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
vancityraincity Guest
Posted
Hope your day has been better than yesterday, on our road to healing.
Guys, has your body felt “infected” before? Sometimes it just feels like a bacterial infection like the sore throat and weird body aches and almost heart aches... I am totally freaked out. My gums too!! How can gums hurt?
craig07920 vancityraincity
Posted
I often had the feeling during the virus that my body was just totally beaten up, pain and aches everywhere and run down with sore throats and things - just want you to know this all passes and settles in time (not much help when going through it I know), just want to reassure this can be very normal and you will get better - I believe you will get better 100% and just take things slow at the moment.
Craig
GAilanne9 Guest
Posted
craig07920 GAilanne9
Posted
That's good to hear Gailanne, hoping that your recovery can continue to go in the right direction. Believing that because of God. Vitamins really helped me during recovery as well.
Craig
arian89091 Guest
Posted
i recently had another recurrence about 3 month ago and this time my abdominal lymph nodes have been swollen for the whole 3 months and i cant seem to get rid of it i've been to a ton of doctors, have done a tone of blood exams ... and it only shows the ebstein bar virus.
i'm 22 yo male
has anyone else had the same problem and if so what can i do?
craig07920 arian89091
Posted
Hi Arian,
So sorry to hear you have been having such a tough time this past few months. It really is an awful virus and empathising having went through a tough time with it myself many years ago. I remember having some weird gland type pain in that abdominal area during the virus also, as well as one particularly swollen lymph node in my neck. It was so frustrating, but with time it did settle down and get better, thanks only to God's help I know that for sure.
It is classic mono to have all sorts of aches and pains and feel so bad and for blood tests to show normal apart from the EBV. Although that can be frustrating as you think 'surely EBV can't cause all this', please take it as reassuring that it means that it is almost certainly the mono causing these awful symptoms and nothing else. And importantly keep in mind that it does get better, so sorry to hear this is a recurrence for you.
Resting and removing stress as much as possible is very important, even if it means having to take a step back from work or studies or whatever for a while. I know it's not an easy thing to have to do though. Also taking vitamins and herbs helped me a lot during recovery and even today - a good strong multi-vitamin per day (I take Immunace Extra here in the UK), a B complex vitamin per day (great for nervous system and energy levels), higher doses of Vitamin C (1000mg-3000mg per day) and immune boosting herbs like siberian ginseng, echinacea, oregano I all found very helpful during the virus.
Another good one for viruses is the 'baking soda remedy' - which is 1/2 tea spoon full of baking soda dissolved in plain water taken twice per day on an empty stomach for 1-2 weeks (no longer at the one time). The alkalinity is good for fighting nasty viruses, and it can be particularly helpful with things like sore throats, mouth or gum issues too, gargling that in the mouth before swallowing.
Anyway just a couple of suggestions of things that have helped me - of course remember I'm no expert and just going on what helped me, it's important to always check for any interactions with other conditions or mediation before starting to take herbs / vitamins. Another good alternative / natural and very safe therapy is Bowen Therapy which has been particularly helpful to me for sciatica but it can also help with various conditions and aches and pains.
Hang in there Arian - there is recovery and there is healthy and full and active life after this virus - truly there is and that's coming from someone who was hit quite intensely with it for an extended period. Thinking of you - God is the great healer!
Craig
arian89091 craig07920
Posted
always a great help craig
thank you
craig07920 arian89091
Posted
Thanks Arian, appreciate your message and kindness. And really just want to encourage you today not to give up, and to remember that despite this virus being so horrible and intense and prolonged, that you will get better and all the horrible lymph node pain and other symptoms do completely settle down with time and patience (so hard to be patient though during this I know).
Wishing you Happy Easter Arian and thinking about you today.
Craig
Holman34 Guest
Posted
Article says it was posted 13 years ago. It however hit the nail on the head relating to my personal experiance w/Glandular fever. I was first diagnosed w/it at a hospital in Chicago in December of 1965 when I was age 17. I was hospitalized 4 days and was quite ill w/a fever of 105+. I still remember being lowered into a tub of ice cubes as an emergency method to reduce the fever. I'm told this isn't done anymore. The doctor said it would likely recur when my system was run down, and he was right. Now age 71, I'm currently in the 3rd week of a reoccurance, the second in 2 years. Symptoms are exact everytime but the fever is much lower, (102 for only 4 days). My present doctor is at a loss to treat it, just says "sweat it out." MIserable but as the article says, there are much worse maladies. Just is hard for others who aren't afflicted to understand.
craig07920 Holman34
Posted
Hi Holman,
Goodness so sorry to hear that you've had this dreadful experience and battle with glandular fever so many years of your life, I just hope and pray for your recovery and that things can improve and be much more settled soon.
I went through a tough time with glandular fever myself 12 years ago, had a really horrible year and took me some time to recover and get fully back on my feet after that. I was so low and down and weary with it and feeling so unwell, I know it was only down to God that I was able to recover and get back to good health, and I'm eternally grateful for that. Hoping and praying for God's intervention in your situation Holman and for complete healing and that the power of this dreaded virus can be broken once and for all in your life in the name of Jesus.
Just wanted you to know I was thinking about you and to encourage you not to give up, there is always hope because of God. He is a miracle worker, and just hoping so much you can feel much better soon and not have these issues continually like this. Hang in there Holman, message any time.
Craig
Holman34 craig07920
Posted
Thank you for those kind & encouaging comments Craig. Thanks also for the prayers, must have worked, since today I feel 99% recovered, a full 2 weeks earlier than it usually takes. With your experience you realize its not only the malady itself that is so debilitating, its the psycological toll it takes as well. One wonders if they'll ever recover. All credit goes to our loving creator, for any semblance of health any of us has is due to his grace! Its not easy to be phylosophical when one is suffering, but we much remember the trials of Job, and the reason he had those trials. That said, my recovery is so dramatic I feel like jumping up on the roof without the aid of a ladder, however I'll restrain myself to not do so. Thanks again, all the best! Pardon the delay in reply, I was away from my computer.
craig07920 Holman34
Posted
Hi Holman,
Oh I'm so pleased to hear that you are feeling much better, this is great news! Praise God for that! Thanks so much for your wise words, definitely Jesus is our Lord for healing and protection, grateful He is good and merciful. The story of Job is one that has been helping me too in times of need over the last year or two also, just remembering how much suffering he went through and how God had the final word and ended that story, gives us real hope and faith.
It's so hard as you say Holman when in the midst of terrible trials and suffering, to see things in the right perspective and to cling onto God at times, I'm just so pleased you are feeling much better and believing that God has amazing works and plans ahead for you!
This past week or two I have been getting some bother with a kind of headache around my right eye area, going to see the doctor today as has been worrying me a bit especially the last day or so - any prayers for God's healing and help with that would be much appreciated.
Your post has really gave me a lift this morning Holman and praying for God's continued love, healing and protection in your life over the coming period, for His Holy Angels to be around you and war-ring on your behalf in Jesus' name.
Keep in touch and let us know how you are doing over the coming period! Praise God, Praise Jesus, Bless the Holy Spirit!
Craig
Holman34 craig07920
Posted
Hello Craig; Be assured of my prayers in your behalf as I believe your prayers played a part in my surprise early recovery. Not at 100% quite yet, but dramatic enough of an improvement to seem remarkable. This morning I went w/my wife for her routine doctor appointment. Afterwards I mentioned to him my belief that my current illness is recurring glandular fever. He reiterated his position that its not possible to get reocurance once ones had Glandular Fever. I asked, how else do you explain it? He admitted he would have to do more tests, and that the Epstein-Barr virus has been present in me for longer that he has seen me, but he still thinks it impossible to have a recurrance. Its curious you mentioned a "headache" of sorts behind your right eye. I've the same thing, directly behind the eye. Does not seem to affect my vision, and doesn't last more than an hour. Its helpful to "compare notes" as it were. We'll be in touch.
craig07920 Holman34
Posted
Thanks so much for praying for me Holman, that is a great comfort and support as this headache / pain over the right eye area been bothering me and worrying me last few days especially. It is the best gift I could have when people pray for me, it is a great source of encouragement and comfort to me when others take the time to do that, especially when they have been going through tough times themselves, thank you Holman you are a true friend and child of God and it means so much.
Be assured also that I intend to keep you in my prayers and believe that you are going to see God's hand move even more in your recovery, that even more breakthrough and healing is on its way thanks to God. I can only imagine the weight and burden and suffering you've had to go through over many years with this Holman, and hope so much that this headache around the eye area settles down for you very soon too. I'm going to the optician today so can let you know how I get on with that.
Glandular fever is the most horrible illness, I wouldn't wish it upon anyone Holman, although I was so fortunate that my suffering with it was confined to a much shorter period, I don't forget how frightened and unwell I was with it and how much I relied on God only to heal me and pull me through, as there was no way I could have got through that myself.
And God is working on your situation Holman, I really believe and sense that, and I believe you're going to be amazed at the great things He's going to do in your life over the coming period - better times ahead. Hang in there and thinking about you today, and thanks so much for your prayers it means so much!
Craig
Holman34 craig07920
Posted
Hello Craig; your continued messageing is quite the encouagement, & I hope mine has a positive effect as well. I hope the optician will correctly diagnose the source of your eye area pain. You describe yours as over the eye. Mine seems to be deep directly behind the right eye. Only briefly, and at random times. More of an ache than a pain. I don't think you mentioned your age, I'm 71 and have found out what my elders complained about, phantom pains that come and go willy-nilly. My bout w/GF is continuing to improve. Still sweated the bed soaked last night, only got up once, & had the best rest in a long time. Otherwise I think I'm in stellar health for my age. Today is day 23 of the latest round of GF. Past experiance tells my it takes about 45 days for full recovery, or should I say remission. My doctor is 81 and from India. Been practicing in the US since the 1960's. Pretty hard to sway him from conventional beliefs. He plans a full series of tests soon to help him determine the source of my illness, That has been done by other MD's in Illinois, Ohio & Texas. All either concurred it was Epstien-Barr virus, or had no idea what it is. Many MD's I've found refuse to believe that it can reoccour. This episode of GF permits me to function okay during daylight hours, nightime is allways the worst, I struggle to find a link between the eye pain & GF. Perhaps it has, or is a coincedence. I pray the doctor is guided by the infinite wisdom of God to make the correct diagnosis. In our brief corespondence, I can tell your a caring, intelligent, God fearing, individual. You, I believe, will do well. In your closing comment, you wrote God has amazing things planned in the near future. So true & so amazing that time & space doesn't permit elaboration at this time, later. Get well soon!
craig07920 Holman34
Posted
Thanks so much for your kind and encouraging words Holman, it means a lot. I have really been struggling with this headache this week and got myself into a bit of a panic and state about it, just praying for God's mercy and help. Your prayers mean so much to mean Holman, thanks so much.
You've been through so much by the sounds of it over so many years, I hope and pray for your healing Holman, trusting in the Lord with this, He is going to come through. I see such wisdom and strength in you and your words, it gives me hope and encouragement, especially when I'm struggling myself. I hope this eye pain settles for you and I will be keeping you in my prayers at this time. All prayers for me are such a great gift and thanks Holman, you are a true friend.
You are a very caring, kind and compassionate child of God, that shines through and please remember that there is hope and that God is our great healer! I believe that you are going to be completely healed from these recurring episodes and that God is setting you free - who the Son sets free is free indeed.
Thanks for your help and sorry for slow response, not quite myself at all these few days really praying for God's help.
Craig