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
adam39234 Guest
Posted
So i had worst bout of gf april 2017. It lasted so long. The peek lasted monhs. Thought i was dying. Body shutting down and so on. Its now nov 29 . 8 months later. Ive only just started to come right in the last 3 weeks. As in feeling like im going to be right. It was never getting better and i was worried that was it for rest of my life but i changed a few things and recommend this as the last 3 weeks ive come good
Started taking these daily
NRG biotic capsule by Medlab twice a day
Olive leaf extract capsule
Zinc supplement tabletb twice a day
L Lysine tablet 1000mg twice a day
Siberian ginseng 2000mg
Turmeric tablet 3000mg
And CBD 500mg oil 3 times per day 7 dropps under tongue 3 times per day
Sure enough im feeling like my normal self
I wish id tried this in the beginning.
Honestly i wasnt getting better until i had all the above taken daily and healthy diet
Good luck
craig07920 adam39234
Posted
Craig
jo96696 Guest
Posted
Hello, I am really, really relieved to find this information here. I am now 48 years old, and had Glandular Fever in the summer I turned 15. It took me until well into the following year (can't remember exact dates, but do remember coming home from school a curling up on the hearth mat in front of the fire until we didn^t need the fire anymore. I had all the symptoms described by others here. A period of approximately 3 weeks of severe symptoms, being bedridden and stricken by fever, then months of recovery. I was a fit and healthy teenager, a proud member of most of the school sports teams and was devasted by the time it took to get back to fitness.
I was shocked when towards the end of the next summer, at 16years old, I had a second bout of full symptoms and took another 6 months or so to recover.
Throughout my life, particularly at times when I have been taking less care of myself, I have bouts of exhaustion and the brain-fog and lack of mental alertness described here by others. I have berated myself for being lazy and unmotivated when I cannot raise the energy to do the simplest household tasks, or play with my children. I get no understanding from those around me - who have long since decided I go through "lazy spells" and am frequently diagnosed as clinically depressed.
I wonder if anyone knows of any genetic research that has been made in regards to these strains of illnesses. I ask as my mother was diagnosed with MS not long after I was born, and battled with mental health issues too. My maternal aunt was also diagnosed with ME in the 1990's and continues to try to manage her condition with a mixture of good diet and exercise. i wonder if I was genetically pre-disposed to getting Glandular Fever.
As I guess most of you were when you turned to Google for answers to the questions, Why? and What should I do about my exhaustion? I am currently in the middle of another bout of crippling exhaustion. I have never had that level of infection in my glands as I did when had the severe bouts, but I do always have a nagging sore throat, headaches and neckaches.
I will try to look after myself better, try the vitamins and supplements suggested, and although I am ludicrously unfit now, I shall try to do more exercise.
Thanks for helping me to begin to believe I am not a worthless lazybones and a useless mother.
craig07920 jo96696
Posted
Hi Jo,
So sorry to hear you've had such a long and weary battle with glandular fever and bouts of fatigue and exhaustion. It just seems to affect people in so many different ways, and leave different effects on people and just really sorry you've had to deal with this for so long.
Want you to know that even after all these years there is still hope, definitely trying the vitamins and herbs is really good idea - B complex vitamin and Co-enzyme Q10 are great for energy, and if you combine these with a good strong multi-vitamin and high doses of vitamin C (1000mg-3000mg per day), and maybe an immune boosting herb like siberian ginseng, it really could help your energy levels at times you are finding it tougher.
AND most definitely you're not lazy or a useless mother....folks who haven't been through this just don't understand the full effects and how it leaves you feeling, just so sorry you've been on the extreme end of it but I definitely do believe with vitamins and managing activity then things can improve a good deal. In fact I think you've done amazing to cope for so many years, and especially being a mother through this time you should be applauded!!
Thinking about you and hang in there! There is hope today!
Craig
craig07920
Posted
Also a good book to read if you can that helped me.....Viruses, Allergies and the Immune System by Jan de Vries
jo96696 craig07920
Posted
Thanks for the support Craig 💜
Gracie999 Guest
Posted
Suggest you ask your doctor to check serum levels of IgG, IgM and IgA, since it sounds possible that you're not creating enough antibodies to hold the virus at bay. Good luck.
jo96696 Gracie999
Posted
craig07920 jo96696
Posted
You're welcome Jo, hang in there!
The message that was moderated was me trying to tell you about a b-ook that might be good to read, something that helped me, doing it with spaces in it so it doesn't moderate:
J-an d-e V-ries - Viruses, Allergies and the Immune System
adam39234 jo96696
Posted
Hi Joe
?Definitely look into the suggested daily vitmains minerals and herbs.
?Also if you can get your hands on Medlab's Manuka-C product. that is also what I have been taking.
Manuka-C™ is scientifically formulated to support optimal immune system function. It includes evidence-based ingredients containing a blend of three ascorbates combined with glutathione and Manuka honey powder. Ascorbic acid and zinc are vital for the optimal functioning of the immune system including the anti-microbial activity of white blood cells and are also important for wound healing. Glutathione assists with the physiological role of ascorbic acid within the cell, while Manuka honey has traditionally been used for its anti-bacterial, anti-viral and anti-fungal activity.
jo96696 Gracie999
Posted
Hi Gracie,
Following your suggestion, I did go and have a blood test. The results showed that all the levels were within the parameters that are "normal", with the exception of the ANTI CMV IGG levels, for which the normal level is 6 and mine came up as 168.2. Now, you suggested my levels might be low, but these are the reverse. I know that you are not a medical expert, but wonder if your experiences have given you some insight into what this could mean. The doctor was dismissive of me when I asked for an interpretation of these results. I am guessing that this merely indicates that I have had this infection in the past, and is not (in professional medical norms) an indicator of ongoing problem.
Any help appreciated
craig07920 jo96696
Posted
Hi Jo,
I really do feel your pain with doctors being dismissive, I only wish some of them would take more time to consider how worried and anxious people are, especially over viruses like mono / glandular fever which causes such horrible effects and bring people down so much.
I'm afraid I'm no expert on blood tests or anything, I do know though that as you say I think if you get an EBV test (virus that causes mono) then even it can show if you've been infected with it in the past even if it's not active in your system at present.
Really hoping things improve and remember you WILL get better Jo, hang in there.
Craig
arian89091 Guest
Posted
hello all
sorry for the bad english im' still learning
am a 20 yr male, ever since i can remember as a child i always got sick with the same symptoms, sore throat with white coverings, low fever and fatigue.
almost every month my parent would take me to the doctor and they would diagnose it as a flu and would prescribe antybiotics and i would get better after a week or so.
this continued untill i was 17, the periods would acure less and the fatige wasn't so bad any more so i thought eventuly i was gettin better.
until last year when i moved to rome to start college, the first month i was in good shape until i cought a flu and ever since my health has just been moving downwards.
the last year i was sick all the time with deppression, anxiety, brain fog and extreme fatigue to a point that i was sleeping 12 hours a day and even taking a shower would seem like i had just climbed a mountain.
so for the last 2 months i started taking high doses of vitamin c and resting most of the time witch helps but i haven't recovered fully and it seems like i am not getting any better,
i'm still missing school and find it hard to focus for studying,
i saw this article and was relieved to find that this actually exists, because basically no one believes me.
i'm about to take the hemoglobin tests to see if there is any thing wrong there.
so any way thank you for listening
craig07920 arian89091
Posted
Hi Arian,
So sorry to hear you've had such a tough time with illness over the years, yes vitamins and herbs can definitely help - also maybe worth trying a good strong multi vitamin per day and also a B complex vitamin which can be great in helping with brain fog and concentration, etc.
Definitely the right thing to do to go to the doctor and ask for blood tests as you've been struggling for so many years - really hoping that this can help you get to the bottom of things and that they can provide good advice with the right treatment.
I do believe you will get better and I trust God with that for you Arian.
Take care and thinking of you
Craig
arian89091 craig07920
Posted
thanks a lot craig
feels good to know atleast someone understands me, and i wish the best for you too.
i did do a blood test, and the doctor only prescribed vitamin d which i'm taking.
i was wondering if anyone here did the immune system test and what were the results of it?
craig07920 arian89091
Posted
Thanks Arian, I really appreciate that means a lot.
That's good you are taking Vitamin D, also wouldn't harm and could def help to take a multi vitamin, some extra Vitamin C and a B complex vitamin per day too.
I don't know much about immune system test or anything, but do keep going back to doctors if having a tough time and get them to regularly monitor your blood tests and everything.
Take care and hang in there - remember things will get better.
Craig
arian89091 craig07920
Posted