The lingering kiss of EBV, aka Glandular Fever

Okay, so the title may be a tad corny, picking up and running with the name “The Kissing Disease”, for what is an extremely unpleasant illness. But hey, it got you here.

So, let’s talk Epstein Barr Virus, (aka Glandular Fever, Infectious Mononucleosis, The Kissing Disease).

I suspect that anyone who reads what I have to say about this virus, who has had their own encounter, could relate to at least some part of my thoughts about this illness.

For the sake of keeping things simple, I am just going to refer to this little nasty as EBV.

Throughout this blog I have often cited my First Car Accident during 1990 as the beginning point for the decline of my health.

Although looking back, the decline of my health may have begun a number of months before that first car accident, during November of 1989 with a rather significant case of EBV.

Maybe it was a tad earlier than November, given incubation periods and all, but November simply rounds it out.

However, it wasn’t until I saw a physiotherapist who specialised in complex medical conditions during 2014, (25 years later), that I was enlightened to the possibility that my brief encounter with EBV may not have been the brief encounter with such little significance that I had been led to believe it was up until 2014.

Quite possibly, my encounter with EBV was more like a silent slow lingering kiss of sinister intent throughout the rest of my life, rather than a peck on the cheek that meant very little all those years ago when I was teenager!

Which in fact, is the case for a certain percentage of people whose brush with EBV does result in lifelong health complications due to the way their body responds to the virus.

My experience with EBV was as a 17 year old student, slightly more than a month away from completing a pre-vocational baking course at TAFE.

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TAFE Course – Baking Demonstrations at The Royal Adelaide Show 1989

Still actually only 16 at the time my first symptoms began, I will never forget the seediness that increased little by little, the crashing fatigue or the first stages of what I thought at the time was just the sore throat from an oncoming cold, or maybe even just a flare of spring time allergies.

A number of weeks passed by, in which time I celebrated my 17th Birthday and then the nausea and the cold / flu like symptoms progressed to the point that I was unable to go to TAFE or leave the house at all.

Throughout the final week of November I was completely bedridden, burning up with fever, feeling like shards of glass were cutting my throat to pieces with the smallest sip of water and even my own saliva causing immense pain when swallowing. I had no energy at all to get up out of bed other than to make my way to the toilet, all the time my body shivered with chills, weak and unsteady while holding on to walls and door frames to support myself.

My body had completely succumb to almost everything the EBV could throw at me.    

By the 29th of November my condition was serious enough for our family doctor to have me admitted to hospital.

Thankfully when we arrived at the Emergency Entrance to the hospital a nurse was on hand to have me move straight from the car into a wheelchair, I could barely hold my head up as I was wheeled to the ward, there was no chance I was walking any distance from that car.

As a result of my inability to eat properly for weeks, followed by having not eaten for a week by the time I was hospitalised, my 5 ft. 8½ inch solid built had reduced to just 59kg on admission to the hospital. All of which was clearly a factor regarding the extent of the lethargy I was experiencing.

At the time of my hospital admission I was just days away from a graduation evening for the TAFE course I had worked so hard to complete. As one would expect, my parents were keen to have me discharged from hospital as soon as possible in the hopes I could join my classmates in the overindulgence of a formal occasion we had planned for our big day.

I mean it may have only been a TAFE course, but it was the only graduation I was going to get to enjoy with the classmates that had become a very close knit group of friends.  

Knowing the situation, the doctor in charge of my case offered my parents, what was, a controversial and at that time very much experimental treatment option…. High doses of Intravenous Vitamin C.

So controversial at the time that the doctor chose to omit that particular treatment from my hospital records.

Omission from my records aside, that particular treatment facilitated a far from anticipated recovery. Astounding medical staff, including the doctor himself and my parents, given how extremely unwell I had been.

As a result, by the 1st of December I was seen as fit for discharge and did in fact attend my graduation, enjoying every moment of the celebration, as tiring as it was.

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1st of December 1989 – Discharged from hospital to attend my TAFE Course Graduation with my classmates, that same day. Scrubbed up not too bad for someone who had been bedridden for almost 2 weeks and was still quite ill.

During the months after the height of the illness I did battle fatigue, nausea and what felt like the linger symptoms of a bad cold, but it was all manageable and easy enough to live with as best as I could given how bad the height of it had been.

Then on the 13th of March 1990 I had that first significant car accident, followed by a major head on Car Accident during 1995, to yet again be followed by one more final significant Car Accident during 1996.

Rather than digress here, I will let the posts about the car accidents, along with my 1990 Work Cover Experience speak for themselves in relation to the injuries sustained and bodily dysfunction that resulted from those car accidents, which will become relevant to this part of my story in a moment.

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Not much to say really!

On the 13th of March 1990 my body was possibly still recovering from EBV to a degree. Fatigue and feeling somewhat off had just been a part of life throughout the months leading up to the accident. It was illness not given any consideration in the grand scheme of my recovery from that first car accident…. Much less the accidents subsequent to the first one.

Fast forward to 2014 and my three consultations with the physiotherapist who blew everything wide open regarding my health, including the topic of EBV.

By 2014 I had been living with a chronic dull pain in my head, neck and shoulders since the 13th of March 1990. Pain that would on occasion unleash several days of hellish torment in the form of an acute attack of intensifying the chronic head, neck, shoulder and back pain that I simply lived with each day.

Added to the pain of accidents was Chronic Inflammatory Bowel Disease, first diagnosed during 1996. Then during October of 2006 I was struck down by severely debilitating symptoms that created whole body dysfunction.  

The story of my deteriorating health and loss of function was a scenario in which no other medical professional saw fit to look at my history and the possible connections as a whole, with the exception of one other doctor who I was only able to see on 2 occasions before she moved practices.

Having looked at the history and timeline I provided the physiotherapist I saw during 2014, she brought up two very plausible possibilities that no other doctor had even considered.

The first and most likely possibility that I will write on fully in an upcoming post, was the Brain Trauma Injury I sustained in the 1995 car accident.

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On the 23rd of April 2016, 21 years after the head trauma, I had my first and only MRI, looking only for Multiple Sclerosis, with no room given to ask questions or discuss any other form of neurological involvement through illness or injury…. But as I say, that is a story for another day.

Her second, and very much understated thought…. My brush with The Epstein Barr Virus!

Unfortunately for me, this was yet again another case of finding a great medical professional who neglected to inform me prior to my first consultation that she would be moving to a new practice and I only ever had the opportunity to see her for three consultations.

Nevertheless, she did equip me with knowledge I did not have before those short lived consultations and two leads I could explore regarding my health.

So looking into the EBV myself, what I began to find was multiple connections.

Firstly in relation to the initial car accident of 1990, to my mind, my body was still very much recovering from the virus that had chosen me as its playground. I believe this due to the lingering effects I was still experiencing three months later, at the time of the first car accident.

(Although, I cannot find one single medical professional who will hear me out or even entertain this thought just for a moment.)

Personally, I do believe there could well have been a possible overlap between the virus and the injuries sustained, which impacted my recovery of both the injuries from the car accident and the EBV.

However, rather than look at my history, the medical and legal practitioners involved in my Work Cover Case at the time of the 1990 car accident preferred to label me as a psychologically unsound, malingering, money hungry compensation fraud than to consider any other possibility regarding my slow recovery.

Least of all that I was actually telling the truth about my physical condition or take into account the severity of any illness I had experienced relatively close to the time of the car accident … And lets just forget about the true severity of the whiplash I sustained, that was all in my head!

The injuries from the accident aside, as I began to delve into the nature of EBV I found suggestions that it could be a way for autoimmune diseases to take hold. Diseases that may or may not have already been within a person’s genetic makeup from the get go…. One of which is, Inflammatory Bowel Disease…. Ulcerative Colitis!

I also find the correlation between EBV and autoimmune disease very interesting as someone who experienced autoimmune symptoms within the first month after my birth, and throughout my entire life since.

Despite now being told by two specialists recently, in tandem, I apparently do not have and have not ever had autoimmune symptoms! … (Stares blankly, blinking in astonishment!)

Back to the EBV….

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While large numbers of people have been exposed to and carry EBV in a dormant state throughout life, there are those who have the misfortune of experiencing EBV as an aggressive force within their bodies once it has become active.

For a good number of those people who experience EBV in its active state for a time, they will only experience it once, recover and continue to live with EBV dormant within their bodies, much the same as those who carry the virus but never live through its active state at all.

Then on the other hand there are some who will not only experience the active state once, but live with the impact of EBV in an active state throughout various systems within the body for life. The EBV picking and choosing its times to reveal its presence within the body, all to various degrees and through numerous manifestations.

Personally for me, since 1989 I have lived with escalating times of significantly diminished immune function, swollen glands, painful neck and throat, as well as flue like symptoms for months at a time … Which may or may not be related to other illnesses or injuries.

I have also found, since my EBV experience, a need to be extremely cautious with how I choose to spend what energy I have so that I can avoid the scenario I have just described above … Trying to avoid an inevitable crash of fatigue as my body fights to regain a healthier balance once again.

Sadly for me, I have been unable to find one single doctor who will entertain the notion that EBV could be a major contributor in the decline of my health, possibly in conjunction with autoimmune illness.

It is one of those suggestions that gets met with, “It is rare, so there is no need to give it a second thought!”

Knowing several other people who have experienced the nastiness of EBV in its active state I have heard similar stories to mine, without the complications of car accidents or other illnesses, but I am always interested to hear other people’s stories because there is still so much unknown about EBV and the full impact it has on the functioning of the body.

So whether my medical journey began before, after or as a result of the EBV I don’t think I will ever know, the time for knowing that conclusively is well long gone. However, it certainly is a relevant part of my medical history and I would imagine it would be a relevant part of other people’s medical histories too without them even being aware of it.