Living with Recurring Glandular Fever Many people who c...

I had GF 13 years ago but have struggled ever since. I have tried to pretend nothing's wrong and push myself through things but I'm at my wit's end and have an appointment with my Doctor this week.

I feel tired almost all of the time, regardless of how much sleep I get and how much exercise I do (I swim competitively and cycle/run). Every little bug I pick up sees my glands swell ridiculously, resulting in painful ears and throat, as well as regular sinus problems. The latest started with very painful, debilitating sinus headache and has progressed to earache in both ears and a painful throat that makes it hard to swallow.

My younger Sister also had GF at the time I did and was diagnosed as suffering with Chronic Fatigue several years ago; she is only able to work around 25 hours per week or she gets quite ill and she has to get around ten hours sleep per night or she's as good as useless.

I'll be interested to hear what my Doctor says as my Sister's originally tried to tell her she was suffering from stress and needed anti-depressants, and it was quite some time before she was able to convince them otherwise.

I am 35 and i was diagnosed on 9th july 2013 but i know ive had it alot longer than (nearly) 5 mths and also feel like ive had it or something similar most of my life. one thing about this is that i had my tonsils out 9 yrs ago when i was 26 so you dont get the pus filled tonsils. i had an agonizing sore throat, the most painful one i have ever had, and ive had throat infections/tonsillitis every 3 mths so i know what pain is. it also came with tiny speckled dots all over the uvula and still the doctors wouldnt give me any antibiotics, only throat spray which i over dosed on. if i dont have tonsils then theres nothing there to fill with pus so surely they shd have given me antibiotics just in case they did help me as i was at my wits end. to top it off im now about to have my 4th dose of this agonizing throat! i have not even been asked if im ok or experiencing anything else. if i had not of searched the net i wdnt know a thing as all i have been told is that i have acute glandular fever! the good thing is that i have not spent more than one day at a time in day and i have a lil boy who is 4 and half so he keeps me busy and i still go to work too.

i am 28 i never got ill with glandular fever i caught it at the age of 15 and only today after reading all your posts have i realized what is wrong with me, i have had a dull ache in my throat for years witch makes me feel stressed , i have had pains in my chest i get tired everyday around 2 pm and i have noticed symtoms subside when i exercise i only found out that i had the virus when i was told it was found in my blood that i showed signs of having it in the past i will be mentioning this to my doc ,im concerned but relieved at the same time as ive fort i had throat cancer had camera put down my throat had full blood count the lot ,

Gracie999,

How did you see the head of clinical immunology? Is that something I can do through my GP or did you contact them privately?

Your help would be gratefully appreciated.

i went to my gp n said how exhausted i was n she sent me to the nurse for full bloods to b done and it came back with acute glandular fever. ive now had it 6 mths and its no better. in fact im worse. i struggle to wash my hair, put make-up on, put the washing on, hang the washing up on the dryer. its all getting too much. if it werent for my son whos 4 1/2 i wdnt even get out of bed till the late afternoon.

Sorry about the long post but I thought it was important to share my whole experience.

I found I had glandular fever in November 2013, but this was after months of having a sore throat and just generally feeling awful. I found I would feel a bit better after a few days in bed, but as soon as I went back to work the symptoms would come back again. My first doctor just thought I had a general virus as my glands weren't that swollen (my throat was sore but not as bad as when I've had tonsillitis in the past) so I eventually tried another GP who asked if I'd glandular fever before. I'm 27 and most people have already had it by this age apparently, but the blood test came back positive so at least I knew what I was dealing with. I got my partner to go for the blood test as well as his throat was starting to hurt but it turned out he already had the antibodies so he probably had it when he was much younger without realising.

My GP basically told me to rest and make sure I get plenty of vitamin C. I also took Astraforte which is the herb astralagus, fish oil, vitamin E, vitamin D, probiotics, vitamin B12 and the odd paracetemol. Took even more time off work and ate super healthy (I'm usually pretty healthy but I really upped my fruit and veg and cut out dairy products and sugary treats). I definitely improved doing all of this, but still generally just felt like crap! Had no energy (as you'll know it's a different feeling to just not getting enough sleep - it's exhaustion on another level!) and doing the smallest tasks became really overwhelming. I then started to feel pretty down about the while thing and was worried about whether I'd feel better by July when I'm getting married. Even going for a coffee with a friend seemed like too much effort so I hardly saw anyone for quite a few weeks.

Anyway here's the good news - I'm now feeling amazing again! I read about taking high doses of vitamin C. Although my GP had mentioned vitC she never spoke about how much I should be taking. I was therefore just taking the normal dosage as instructed on the packet. The problem is that this dosage is only really enough to stop you from getting scurvy, which is pretty impossible to get unless you avoid all fruit and fruit products. To get any benefit from vitC when you're immune system is stressed you have to really up the dose. I started chowing down on vitC tablets like they were sweeties and within 24 hours I was feeling SO MUCH BETTER! There is something known as the vitamin C flush which happens when your body has reached its maximum intake of vitC. Basically it results in a bit of an upset stomach, and once you reach this stage then you need to lower your dose. I was taking 3g of vitC every hour as chewable tablets which are made up of ascorbic acid and sodium ascorbate. The sodium ascorbate makes it a bit easier on your stomach, but you'll still experience the 'flush' at some point. If you're ill then you will be able to digest a lot more vitC than someone who is well.

After a couple of days of doing this and drinking lots of water (vitC is a diuretic so it's important to keep up your fluids) I got sick of having to chew the tablets. I started swallowing them whole with water and within a day I was feeling like crap again. I don't know why but at the time I didn't associate the two and I just thought that maybe I had to up my dose slightly. I started swallowing 4g every hour which still had the same effect on my stomach (slightly 'looser' if you know what I mean) but I wasn't feeling any better from it. I think this is because without chewing the tablets they weren't being digested properly and were pretty much just being passed through. I then purchased ascorbate acid tablets which you dissolve in water so again I didn't have to chew. but these gave me such an bloated stomach that it wasn't worth it.

At this point I happened to read about liposomal vitC. It's basically vitC encapsulated in a fat (liposome) which makes it much easier for your body to absorb. Normal vitC can't be fully absorbed by the body. In fact, only 9% of the vitC you ingest is absorbed with the rest being flucshed out. Liposomal vitC is absorbed at over 90%, making it ten times more powerful!! You can make you own liposomal vitC and there are loads of videos online about how to do it (you need an ultrasonic jewellery cleaner and some other bits and pieces but once you've got all that it looks pretty easy to make), but I decided just to purchase the real deal to see if it helped any. I paid $40 (AUS) for a box of 30 packets from a New Zealand distributor and started with taking 4g a day (spread throughout the morning and afternoon). After a couple of days I then dropped down to 3g and am now taking 2g (it's been less then two weeks since I started). Compared to the 3g I was popping every hour with the chewable tablets, this stuff really is absorbed better! After the first week I was better but I happened to have a horrible cold that week so it was hard to judge. By week 2 the cold was gone and I was feeling 100% again! I've ordered more liposomal vitC and am still taking 2g a day, once before breakfast and once before lunch. FYI I found that taking it later in the day kept me awake a bit at night, so I now make sure I don't take it any time after lunch.

I've also noticed that my sensitive dry skin is looking a lot better just now and that's because vitC produces collagen in your body, so it's probably a pretty good way of treating wrinkles too! The most popular story about liposomal vitC is that a man in New Zealand recovered from swine flu after his family put him on it. He was on life support and the doctors were about to switch it off but the family pushed to have him on intravenous vitC. Long story short he's made a full recovery!! I's also read about cancer patients taking during their treatments to help their immune system and energy levels.

For a couple of dollars a day I'm pretty excited about this stuff at the moment and am going to keep taking 2g. Maybe in a month or two I'll drop down to 1g, but this is definitely something which I plan on taking every day for the rest of my life. It'll be interesting to see how many colds and flus I get over the next year as I'm usually quite susceptible to these things. I'm not taking any of my the other supplements any more, just this.

If you're suffering from GF then please give it a go!! And make sure you're eating well. Processed foods and too much dairy and sugar will make anyone feel like crap.

Well I read the last post and it offers some great advice even if it isn't solely about recurring glandular fever, I'm going to give it a try.

I had glandular fever really badly when I was 14, I'm now 62. As an interesting aside it is now believed that although one can carry the bipolar gene, it often takes a serious illness or major trauma to bring it on. After many years, my doctor traced my onset back to Glandular Fever. I too was told that the illness could not recur despite the fact that in my own core I knew full well that it did. It was only when getting yet another recurrence yesterday that I decided to check on the web to see if I was alone and hallelujah, I found this thread.

I wanted to respond last night, but I was far too I'll. I've been in bed all day shivering and sweating. Glands up like eggs and every bone in my body aching. I've now broken the fever and just feel as weak as a kitten.

It has always amazed me that doctors say the disease cannot recur. After all, if that is so, why do they not allow you to donate blood if you've had it?

I have been through this all myself and do believe that even when you go through a good healthy phase in your life, troubles can lie there under the surface ready to re-surface when stress levels rise or another cold or infection is picked up. It always takes longer than other people to get over colds and bugs! It took me a number of years to sort out what helped and what didn't, even going as far as taking a post graduate course to train to become a nutritional therapist to see if I could help myself to manage my health and energies as well as I possibly could and avoiding these bad bouts which can come along or delated fatigue after too much exercise. In the end (in 1998) I decided to set up a help service for those with on-going GF/EBV troubles and have had many people coming through to me for help since then. I still run it now and you should be able to find me if you Google: Gina Burton glandular fever help.

You may be interested in my theory:

I always think that after a bad case of Glandular Fever, you are left with a chronic lowering of your threshold for overdoing it. If you continue to go over this threshold, either physically (with too much exercise, socialising, lots of long distance driving, moving house etc) mentally (with too much stress with work etc), emotionally (with relationship problems, family changes, death in the family etc) or chemically (taking antibiotics, antidepressants, sleeping pills) then the “internal GF health barometer signals begin to show again” (sore throats, tonsil problems or swollen glands / headaches) followed a little while later by the old tiredness symptoms and various other Glandular fever symptoms. Normally it is a combination of the above and gradually you run yourself over your threshold. These stresses can be positive or negative . . . both would have an influence on your body’s coping capacity. In some cases I feel that this threshold is left very low so it would not take much for the old symptoms and tiredness to flare up again. Some cases are just left with the fatigue which never really goes away with bouts of sore throats/swollen glands which come and go. Troubles can continue for weeks, months, years, decades in some cases – constant or recurring in a cyclical pattern.

I see these type of on-going and recurring troubles all the time and is the very reason I set up my help service 16 years a go, as there is very little medical doctors can do to help (no quick fix magic cure).

The Epstein Barr virus (which causes mono/glandular fever) is pretty opportunistic and can take hold when the body is at a low ebb. It is also well known to leave the body with cyclical bouts of troubles afterwards by somehow leaving the body’s immune system out of kilter. The virus remains dormant in the body in its latent form for the rest of your life but can shed from the throat at intervals. In some cases there is a full re-activation of glandular fever but more commonly the symptoms return without a positive mono spot/glandular fever result. A full re-activation is usually seen in those who have got themselves particularly low and/or show signs of chronic immune deficiency. Latest research suggests that although the EBV virus lies dormant it can have some negative impact at a cellular level particularly with the immune system. For this reason I am always very keen to get involved so we can try and minimise its impact on the body's balance and encourage good normalisation so, in time, you can get back on the road to a normal life again or at least get some good management of the situation so you feel more in control.

Feel free to search me out if you are interested. I am always keen to help those who want to help themselves. Apart from my own experiences, understanding and knowledge base I continue to develop recommendations from all the feedback I get from those I have helped. All the measures I suggest are not a cure for EBV but a way of helping the body to cope and restore balance. Working on the foundation of your health can be incredibly valuable. Even people who have been struggling on and off for years do usually say that that have picked up so many tips and helpful suggestions which has helped them to keep recurrent bouts minimised and if they do occur, not so long in duration.

Is glandular fever contagious during reoccurrence? 

Hi,

I have had this glandular curse for last 8 years. It's usually present for like 6 months out of the year. Symptoms include feeling like you have a cold in your sinus without discharge, glands swell in the mouth and under the ears with varying levels of severity and pain. Sometimes tired or just run down from worrying and panick attacks.  Initial infection the tonsils turn completely white and afterwards you get frequent tonsil stones. Mostly feels like your lymph nodes in your mouth, neck, and head are fighting something chronically.

About immune deficiency HIV tests are always negative including standard tests, RNA tests, and t-lymp counts normal. Best guess I have that it's a recurrent herpes, ebv, or cytomegalovirus or other non life threatening std. People think I'm crazy including family. I worry about it turning into lymphoma. No fun at party's. Going crazy. Been to so many doctors with diagnoses ranging from reflux to allergies or my favorite anemia. Anyhow I'm stressing and worrying the immune deficiency theory. I mean I have no other illnesses. Tests always negative. Worried.

David79733

My family does not believe me either, specifically my husband keeps making comments that tell me he thinks I'm acting. The Dr.'s, my GP, diagnosed me with fibromyalgia which ignores many of my symptoms, he also says I'm depressed and my husband believes I'm depressed and that that is why I'm in bed so much. I tell him, while weak, that I have like the flu for 8 months. He badgers me and badgers me until I get up. So I get up and take 2 ratio lenotec / tylenol with codien, which I'd rather not take, and it doesn't work as well as it did 2 months ago, still hot, sore, weak muscles... It's affecting my muscles. First occurred in Aug. 2005, told a virus of some kind, got better in about 6 months and left with weak legs and feet, numbness and tingling in my extremeties, called pheripheral neuropathy.

I wanted to empathize with you re. being thought of as crazy. You just have to understand that your loved ones don't want you to be sick or to loose you, so they may go through periods of denial. I just reiterate how I am feeling which is hard when your not feeling well.

WE NEED A CLINIC WHERE WE CAN BE HOSPITALIZED AND CARE FOR !

But that takes energy and belief.

I would like to see a virologist. I just saw this term the other day.

Wishing you the best ! Be strong !

Poem I like :

Give me strength to carry on,

Give me fortitude.

Build me up,

A mighty fortress,

Impentrable !

Cathie43459