The Epstein Barr virus (EBV) is something that first turned up on my radar, like a sharp little pebble stuck in my foot, a handful of years ago, though I quickly brushed it away because I didn’t like how it felt. Again, it cropped up last summer (2014) when a series of epiphanies seemed to suggest this might be the root to my long-running health issues. I can’t remember what it was, exactly, that threw it up into my vision again but it was around the time I was struggling to get over an extraordinarily persistent kidney infection. When I looked into what EBV was, what trying to get over it entailed, I almost scared myself witless at the implications and thew it back one more time; it just felt easier to say no, it couldn’t be, and move on. It had already been a tough year.
This year, however, I’m in a new place – a generally optimistic place tinged with more than a little frustration at the recent back-tracking going on; a good year followed by a severe health crash for two months now and with ‘new’ symptoms that feel more than a little sinister, try as I might to remain upbeat about them. More so than the generalised old ‘body pain’ of fibromyalgia, the recent focal points of my experience have been the return of the wipe-out choric fatigue (from the beginning stages of my illness) and dramatically yo-yoing stamina, combined with a whole host of alarming neurological symptoms, random bouts of paralysis, excruciating tooth pain, vision problems, heart palpitations, chest pains, dizziness, memory loss, recurrent urinary tract issues, constant new food intolerances…you get the picture. Some of this I had managed to put down to the fluctuating hormones of perimenopause but really? I also kept coming back to thyroid function but not really knowing which way to go in supporting it as a little too far this way or that seemed to make matters worse.
It was in the wake of a particularly rum period of all this happening at once that I felt, suddenly, a lot better yesterday during my walk and, leaning against one of the oak trees I love to sit against, threw out one of those determination cries to the universe that I was going to crack this, that it was ‘gone’ because I said it was and, by the way, if there was anything I needed to know that would help me here, could it please ‘appear’. A soon as I got back home and flipped on my iPad, I spotted a post on Facebook shared by Dr. Christiane Northrup (whose books on menopause and women’s health I rate so highly) recommending a book by someone called The Medical Medium. A quick Google told me this guy – Anthony William – is renowned for being so incredibly, intuitively accurate on matters of health that his appointments are booked up years in advance and his reviewers are made up of people speaking of last ditch recoveries from the kind of chronic illness that leave conventional and even alternative health practitioners baffled.
Of course, I downloaded his book and the associated audios that are on offer from his website and then flipped straight to the parts about Fibromyalgia and Chronic Fatigue. It was (for some reason) no surprise to find EBV waiting there for me as his root-cause of these particular health issues. Then, perhaps it was the fact that William’s tone is unfailingly optimistic, his whole approach geared (unlike most information sources) at talking about recovery but I sensed, all in that split-second, that this was the time I was going to look EPV straight in the eye.
Since then, I’ve been following a ‘paper’ trail – not only through this book but generally on the internet and, even as I write this, things are really starting to add up in the most coherent way.
EBV belongs to the family of herpes viruses including those that cause cold sores, genital herpes, chickenpox and shingles. It infects up to 95% of the population by the end of their lives and, for many people, does not present a significant problem but just sits there in their cells for life. In other words, for the vast majority of people, it never develops beyond stage one and that is that.
Once in situ, however, it lurks hidden within body organs, waiting for opportunities, particularly those times when the body is immunocompromised due to stress, physical or emotional trauma, road accidents, breakups, divorces…that kind of thing. It particularly capitalises on those times when a woman is undergoing extreme hormone fluctuations, for instance, after giving birth or during menopause (which correlates nicely with the times when women so-often develop chronic fatigue syndrome and fibromyalgia…and the fact that they affect more women than men). To quote William, the virus is “almost inhumanely patient…fortifying itself and waiting for an ideal opportunity” even if that takes “weeks, months or even a decade or longer”.
My own story is that I was infected by the virus when I was about 7 or 8 after spending the summer playing with a little girl called Dawn who was staying with her grandma at the end of my road (I include that detail because it makes me smile that it all began with a ‘dawn’). Dawn had very severe-looking cold sores all around her mouth, making her feel a bit of an outcast, which perhaps made us peas-in-pod as I was going through a long-running bullying episode at school and was grateful for the alternative friendship in the holidays.. I don’t recall getting ill particularly (early stages of EPV can be almost non-existent or no more than cold-like symptoms) but I did get cold sores and that started a life-long tendency to developing them at other times of stress or illness.
The times that I look back and regard as periods of the most bizarre health issues and extreme debilitating exhaustion were as follows: at puberty as exam pressures increased and bizarre aches and pains materialised; 6 months into my first stressful job, having just started the ‘pill’ and straight after a road accident which injured my back, which is when I contracted glandular fever (also caused by Epstein Barr); at age 25 after a severe emotional trauma when weird neurological symptoms and random pain episodes began to occur; then on and off periodically between 25 and 32, during which time I experienced three major emotional traumas (I tended to ‘blame’ my health issues on these ‘outside events rather than delving deeper into the root cause). It was the ‘big one’ at age 32 that saw my deterioration into what I have come to regard as fibromyalgia and chronic fatigue syndrome. At that time, I was under very severe emotional and circumstantial stress and then had a flu vaccination (containing mercury preservative; which is telling as EBV loves to feed off mercury stored in the body), which then triggered what felt like a very severe flu, from which point I never got better and, in fact, took a flying nose-dive into chronic health issues.
Why, exactly, some people succumb to this long-running pattern of the virus and others don’t remains a mystery but some headway is being made in terms of speculation and data-collection. One very interesting article from Simmaron Research hints at a genetic predisposition and then suggests that the state of the immunity at whatever stages the virus is introduced to the body is probably another key player. In the usual pattern that first infection occurs during young childhood (which is speculated to be the case for half of all children in the developed world), immunity is usually pretty keyed-up to deal with it (unless…lots of reasons why, in modern lifestyle, it isn’t; over cleanliness and diet probably being two of these). The article goes on, could CFS/Fibromylagia be as a result of coming into contact with EPV later in life when immunity is more comprised or if, for whatever reason, childhood immunity is less-than. In my own case, I was in the midst of a very long-running bullying episode and was worrying that my father might die at any moment (long story) so, you could say, I was probably fairly immuno-compromised when it got hold of me!
Over the last decade, I have been on a long, steady, road to recovery through my own efforts and have made considerable headway and yet times of hormone challenge have proved to be road-blocks along the way; including an ectopic pregnancy (which set my recovery back by about two years) and the onset of menopause which – particularly this year – has seen all my progress wobble into even more bizarre symptoms than ever, affecting my brain (fibro-fog, tinnitus, eyesight issues, memory loss and more) and presenting ever-more neurological symptoms (worsening paresthesia, twitching and tremors, intense tooth and jaw pain and, particularly, an acute tingly-itchy-burning sensation at the base of the spine which, actually, is one of the first things that flagged up EBV to me as this can, quite literally, take root in the spinal column and use this as its base as it continues its expansion campaign). No coincidence, I now think, that episodes of the latter – which can be so severe that I have to apply ice-packs to anaesthetise the sensation – seem to flare in sync with ever more erratic hormone patterns as menopause goes into full swing. Also what might be straightforward issues for one person can become far less-than for someone with EBV on-board; such as my long-running episode with an apparently unshiftable kidney infection in 2014 and ongoing. In fact, no ‘ordinary’ ailment is ever simple with fibromyalgia. Stomach ‘issues’ are a relentless problem, so are allergies and hyper-sensitivities. Whenever I feel immunocompromised for any reason, it feels like all these ‘old’ things jump right back on board again, as one giant collaborative relapse. Suddenly I see how EPV could have been playing the conductor of this particular orchestra all along, giving the cue to each recruited aspect of my invaded body-system to play their particular ‘instrument’ to create the sonic boom of a health-crash that comes at me from all angles when it happens, flooring me completely.
The stages of EPV
In summary, EPV goes through 4 stages and not everyone goes past the first one, depending on a range of epigenetic variables, determined by a series of ‘outside’ circumstances and internal variables, with stress, fear and lack of self-love high amongst those triggers. The first stage – as it was for me – is almost undetectable though why it goes on beyond that stage for some people and not for others is a mystery (interesting that my infection occurred near the beginning of three years of relentless school bullying). At stage 2, it can develop into the glandular-type illness that I experienced when I was 22; the body identifies the ‘invader’ at this stage and tags virus cells so it can seek and destroy them. This is a battle that the person caught up in the middle can’t help but experience as ‘illness’ this time and the duration of this depends on other factors such as stress and other life circumstances (mine, it has to be said, were very far from ideal at the time and confidence was at a very low ebb). After that, the virus seeks out a hidey-hole in one of your organs, typically liver or spleen where toxins (including mercury) are processed out of the body, providing a constant home-delivery of exactly the kind of junk food the virus loves to feed off. There, it collaborates with other bacteria, resulting in other infections to the throat, kidneys, bladder etc (the story of my life from age 25 onwards). It also creates waste-toxins of its own, which start to flood your body with poisons, plus a neurotoxin designed to confuse your nerves so much that they become too confused to turn on the virus as they are meant to – how about that for strategy!
Overwhelmed by all of this going on, organs become sluggish, disoriented and, ultimately, weary beyond belief. Mystery reactions to food and other outside stimulants can become a sign that the body is now overwrought and doesn’t know what information to act upon any more. The thyroid (an ongoing problem-area of mine) is particularly hard-hit by this virus and yet open to all kinds of misdiagnosing when tackled without full understanding of what is really going on here. EBV is closely associated with temporomandibular joint (jaw) issues, facial pain and severe, unexplained headaches, all of which I have suffered with for years and which have become intermittently severe – to the point of frightening – over the the last year. It is also associated with chronic stomach issues, even with stomach cancer. In short, it gets its ‘fingers’ into everything, given the time and the opportunity. To confound things further, tests for the EBV by doctors will, likely, show that a ‘past’ virus (as in, no longer active) is present in the body but it seems to be extremely new thinking amongst most of those doctors – if a little more prevalent each day on the internet – that a supposedly defunct virus is actually still capable of springing into action and is just waiting for its opportunity…
For me, that waiting time came to an end just after my mother died, daughter was born, marriage collapsed and the big survival struggle of my life kicked into motion. Exhausted, overworked and plagued with high-intensity emotions, then desperate enough to accept a flu-vaccination to (ironically) prevent the illness I had no time for, I took a stage-dive into the most chronically unwell phase of my life. Its very likely that a latent EPV, newly fed by the inappropriate diet and mercury influx of that era of my life, began bombarding me with neurotoxins at that stage and succeeded in dropping me to the floor with widespread inflammation, hormone disruption and a cacophony of bizarre over-reactions to ordinary things in my environment. The rest of the story is the very complex one of a decade of fibromyalgia and chronic fatigue.
The virus resides in white blood cells known as B cells but – more – it starts to transform these to do its own bidding. These B cells start to replicate, becoming, effectively, memory cells in the body that generate more and more of themselves as time goes on. To quote one article ‘these infected memory B cells build up in tissues – and lead to rises in autoreactive T cells – which also release inflammatory cell messengers’, thus you potentially get caught in an exponentially worsening issue and the increased likelihood of other diseases, including (worst case scenario) cancer, jumping on board. EBV is also closely linked with multiple sclerosis (something I have felt like I am on the border-line of having for at least two years now) due to the nerve damage it precipitates and the loss of myelin from nerve fibres (something I work hard to combat through supplements that I take). One of the biggest connections now being made is between EBV and chronic fatigue syndrome and I suspect this is, in part, due to the widespread systematic attack it conducts which, quite literally, hammers a person’s constitution into submission. Apparently, it is extremely good at mimicking the effects of post-traumatic stress disorder, even without a precipitating event. This can all turn into the “its all in your head” stage, if you even so much as bother seeking medical help any more as no one can work out what is happening to you, or why, and the assumption can be that you are making it all up. By now, its possible that you are starting to feel side-lined, hopeless and, probably, extremely isolated in your despair if you don’t have other focal points, a determination to get better and a very loving and supportive family to keep you going.
Stage 4 is the ultimate one and includes the crazy heart palpitations, electric tingling, bizarre vision issues, chest pains, restless legs, migraines, even hot flushes (all too quickly labeled ‘menopausal symptoms’) and many other signs that the central nervous system is being invaded. Right at the core of these sensations is the vagus nerve (link between stomach and brain) that I have talked about before – which, along with the spinal cord, has to be the EBVs hot-wire communication link between the various territories it has now conquered in the take-over bid of the body, allowing it to press whatever buttons it feels like in order to ‘play’ you to its heart’s content. Unnervingly, this feels like where I am at and – it seems – menopause can be as likely a trigger as any (as I have no others I can think of). The continual, hammering, pain sensations that occur where a short-lived twinge would have been more appropriate (my current tooth sensitivity springs to mind – one brief encounter with ‘hot’, ‘cold, ‘acidic” or ‘sweet’ can trigger hours of tooth agony) is the long-running experience of people with fibromyalgia and – I can now see – is like EBV is bouncing on the trampoline of that nerve at the first sign of pain, keeping it going for as long as possible to wear you down. My instinct therefore – as ever – is to focus on avoiding triggers and then minimising the reactions I have to them with every means at my disposal, which keeps me in control; and I know that mindfulness, meditation, yoga and so on are all extraordinarily powerful instruments to have in my tool-box.
So, at this point, it seems, there is a choice to be made…
All of this is tenuous and very early stage deduction for me and yet it is all slotting together with perfect dovetail joins and is sounding remarkably convincing as a theory, I think you will agree. Also, rather than flooding me with abject terror as it did before, it now feels like looking EBV in the eye has offered me the handle of my own recovery. As I laughed above, there is no coincidence, in my mind, that it began for me with a ‘dawn’; especially as I now choose to witness the events of my life thus far as a steady dawning of light…the light of understanding, an ever-increasing light shed upon me, my choices, my reactions to them, my very grasp of all that I am and what I am here to do…and this is one such. I could choose to be a victim, to interpret this as yet another exhausting battle to be fought, another long day in the field of conflict stretched out ahead of me, a call to fight all over again for the good health that it is my natural born right to experience…or I could regard it as the beginning of the end of illness and yet another dawn – upon a new day.
Seen in that light, I am already feeling the strength of what it is to cast light – my light – in all the corners, dispelling shadows and leaving nowhere for anything to hide. If EBV is at the root of my long-running health-saga then its hiding days are over and casting my own torch-light on where it lurks is the biggest battle already won, such as there needs to be any battle (I’ve talked, before, about my non-resonance with using the language of war when it comes to health issues). Just the same as could be said for all those things that it is a metaphor for, in our world at large, when we shine the light of awareness into all the dark corners and bring everything that is ‘going on’ into the open, there is nowhere left for the opportunists that long to prey on our vulnerability to set up camp and wait to take advantage of us; they are left, literally, nowhere to hide or to scheme at our expense.
If I had to go through all that I did to give form to this eternal truism (and, like the story of Voldemort, confront the importance of ‘naming’ that which has worked so tirelessly against my wellbeing), then I intend to bring it to its natural conclusion and see that I demonstrate how just knowing about this virus will deactivate and disarm it in my body. Like any bully, it is powerless when exposed and, after all, how can I be more fearful of something that has been there trying to have its way with me for most to the years of my life; how can I be more afraid of it now that I know that its there doing what its doing than when it was doing so in the background, hiding in dark corners, leaving me in not-so blissful ignorance yet with the constant feeling that something was ‘wrong’. Again, like a metaphor for our world, salvation comes with knowing, not denying, and in combining the wishful thinking for a better world with positive, informed, action steps that take us ever nearer that reality.
Supporting yourself on the recovery path
In the meantime, it seems – by ‘coincidence’ I am well on the way to supporting my body with some of the recommended supplements that keep coming up for this. Its almost funny how my instincts have long insisted to me that diet and good supplementation held the answer to my ‘problems’ and has taken me off on such a journey of researching and prioritising these things, even when the inner critic has tried to say “relax and stop worrying about what you eat; just eat whatever you want like ‘normal’ people and stop spending so much on those supplements you take”. Rather, I have come to amass some real favourites amongst things that I do ‘take’ and I now find them all on the list of recommended supplements for tackling EBV.
Amongst them, a big one is zinc, also high-dose vitamin D (a huge player that keeps coming up in all the articles – Simmaron Research link a shortfall of this directly to T-cell problems and speculate that living-location (proximity to the equator) and daylight levels would therefore also play a key part). No surprise, curcumin. High-dose vitamin C is also recommended so I need to work on that (I have long preferred other anti-oxidant sources); indeed all sources of anti-oxidants will help. A lipid found in coconut oil has been shown to have anti-viral activity against EBV. One thing that particularly needs replenishing is calcium as the body uses this to shore up its defences against the virus – and, with a lightbulb moment, I realise I have let my calcium intake dramatically slip for the past 8 weeks due to a change in my diet (which corresponds with the timings of my latest health crash). Lack of sufficient calcium can lead to osteoporosis when EPV is draining the body of all its resources, which I was showing very early signs of at my last check.
Hormone disruption encouraged by EPV can lead to hair loss and muscle weakness (yes) as well as the constant wellbeing yo-yo that so many women experience at this stage of their lives – so, I assume its fair to say, careful hormone management using natural hormone supplements and adaptogens like maca to stimulate the body’s own hormone-regulating processes, is particularly important to maintain as a habit. Again, Simmaron Research speculate that part of the gender imbalance found in FM/CFS could be due to the fact females have less cytotoxic T-cells, added to the fact that these are hormone regulated and further reduced by excessive oestrogen, making women more susceptible to these health issues.
Selenium – also recommended – has been another big supplement of mine as a means to detoxing from mercury since having my old dental amalgams removed last year. Quercetin, which I take periodically, is also indicated and I will be adding that in to my daily dosage from now on. A good combination of B vitamins and l carnatine are indicated too. Spirallina (which I blogged about recently in Super powered ways to power up…) is a very active player in recovery from EBV and apple cider vinegar is recommended, also MSM, so it seems I’ve been doing a lot of things right already and I intend to do more of them. I also suspect, and have read in more than one place, that taking colloidal silver is extremely worthwhile so I am back to my one to two teaspoons a day of that (plus sprayed at first sign of throat infection etc.). There are plenty of resources on the internet about all of these recommendations.
Melatonin seems to be a real player in recovery, thought to arrest the EBV cycle or even induce its cell death – which gives the nod to my recent decision to start dosing with 5HTP once again (a precursor to serotonin from which melatonin is made). It also makes sense of my recent instinct to curtail all activities that prevent pre-bedtime relaxation (snacks, using bright lights and technology etc) after a nine-thirty watershed, with a view to getting a better quality of sleep; knowing what I do about how the production of melatonin can be interrupted by an over-stimulated brain, I suddenly appreciate the profound wisdom of that instinct as a means to tackling the underlying EBV.
There is a whole long list of food and supplement recommendations in Anthony William‘s book (which deals with many more chronic health conditions than these) and there are other sources around the internet if you focus your research. One of the better short articles I have come across is on the Wellness Resources website.
One final supplement I will mention here is from left-field and yet something made me purchase it even before I made the EBV connection. It is called RiboGen, manufactured by LifeExtension, which is French oak wood extract. An unlikely source of a food supplement at first glance (though not in the sense I already gain a great deal of support from this favourite of trees…), I first came across the RiboGen in an article on ProHealth. The article was compelling enough for me to order some, although the product is sufficiently new for feedback to be very thin on the ground (this is a link to a forum thread amongst people trailing it, on the Phoenix Rising website). For all I have had this in my cupboard for about a month, I hadn’t yet taken it (when I started writing this post) as my health has been so erratic that I wanted to get onto a more even footing before trying it and evaluating any effects.
However, something just nudged me to wonder whether my instinct to buy this – which was fairly impulsive – was anything to do with EPV so I took a look at it again. A key ingredient of oak wood, as used in RiboGen, apparently triggers a complex series of biological events in the body, particularly affecting the generation of the all-important ribosomes which serve to translate the coding in our genes into particular proteins in the body. So does this have any relevance to the kind of DNA damage set into motion by the EBV?
No sooner had I tapped this question into Google than I was astounded to find a very direct link; this is what I read on the LifeExtension website (in the source document – New Option for Chronic Fatigue Syndrome – there are numerous references cited throughout this article in support of these claims):
It is now clear that Epstein-Barr virus produces very short sequences of RNA, the companion molecule to gene-carrying DNA. These viral “microRNA,” or “miRNA,” sequences bind to host cell messenger RNA. There, they can silence vital genes in the host cells and, as a result, affect proteins that have structural and functional roles. Some of the affected proteins form portions of the ribosomes themselves and may be involved in a host of core cellular activities.
In addition, virus-induced changes to the immune system of individuals with chronic fatigue syndrome are responsible for the uncontrolled degradation of ribosomal RNA. This leads to a cascade of events that destroys structurally and functionally important vital proteins, resulting in cell death.
A virus-infected cell, therefore, has difficulty manufacturing proteins that are essential to cellular activity. Studies now show that patients with chronic myalgia (fibromyalgia), a condition similar to chronic fatigue syndrome, have multiple changes in levels of proteins related to muscle activity and pain sensation, presumably at least in part the result of virus-induced ribosomal dysfunction. Thus, virus-induced changes in ribosomal function may be intimately related to the origins and symptoms of chronic fatigue syndrome.
I recommend you read the articles I have attached for yourselves and draw your own conclusions but, for my own part, I intend to give RiboGen a go and thank the serendipitous instinct (or divinely guided nudge) that brought it to my attention in the very month all this came together for me. If EBV has been messing with my DNA then I intend to do whatever it takes to rebuild it the way it optimally needs to be for me to thrive and go forwards in this body; and it RiboGen can assist with that – well, lets just say I have now started taking it.
Final thoughts – for now
Drawing my own conclusion without repeating all that I’ve already said or jumping the gun with any celebrations, I really feel supremely optimistic – not floored – by the deeper understanding that EBV might well be the answer to a question I have long been asking. My focus, now, can be upon pairing good supplementation, diet and lifestyle with a mindful approach to living – in optimism and joy, embracing life in all the ways I want to as long as they don’t over-stretch the mark or exhaust me (not such a bad rule of thumb, in any case). Also continuing to do all the good things I was already doing (how on track was I!) – just more of them, more consistently, perhaps in a more focussed way now I know what I am dealing with here, making sure that I remain in my power rather than surrendering it carelessly. I have a far better idea of what works in my favour, what doesn’t serve so well now that I have got to know this virus and its own agenda. Obviously, I intend to research more about EBV and remain open to every aid to my recovery that I can get my hands on but, above all, I trust in my own innate ability to take this on myself, now that I know what I do. “Naming it” does feel like a huge power step and, in a way I can hardly pinpoint, I feel different already, having done this today.
Knowledge is power and ‘doing something with that’ is how we get to where we envision ourselves, even when we believe that our back is covered by divine forces or that whatever ‘happens to us’, however unpleasant on the surface of things, is – ultimately – a gift and in our highest interests. True, I have an innate trust in life taking me where I am meant to go that I didn’t posses at the start of the journey, yet I know now that I am also the best instrument of my own highest purpose when I am onboard and working forwards consciously through choice, taking on any challenges on the most direct way that I can. Being in acceptance of whatever comes up is not to say we can’t choose to get to the good stuff sooner, by the most direct means, taking the lesson of where we have been and saying “thanks for that but enough already, I choose to move on”. When we become fixated upon only focussing on what seems positive or thinking only happy, loving thoughts (to the exclusion of any topic that unnerves or frighten us – such as this one) this, in its way, can perpetuate a state of ambivalence that becomes the opportunistic playground of anything, or anyone, hoping to take advantage of that passivity. We hand over our power and drift like a leaf in, sometimes, choppy waters. Taking proactive steps towards the outcome we really want has always been my way and will continue to be so – even more so – now that I have my light shone in this particular corner and have some better idea of what and why. As ever, there seems to be a much broader message in the realisation of that.
The realisation described in this post has felt like a grand epiphany; one that has opened many doors of possibility as far as healing are concerned. I have continued to develop the themes in a number of other posts, which I recommend reading in conjunction with this one:
Disclaimer: This blog provides personal, anecdotal information and discussion about medicine, health and related subjects. The words and other content provided in this blog, and in any linked materials, are not intended and should not be construed as medical advice or recommendation. If the reader has a medical concern or questions relating to the suitability of treatments referred to, he or she should seek professional medical advice.
The Medical Medium – website
New findings with Epstein Barr Virus: The Sleeping Giant – Wellness Resources
EBV Study Sheds Light on Immune Activation – Solve ME/CFS Initiative
New Option for Chronic Fatigue Syndrome – LifeExtension (about RiboGen)
Fifty years of Epstein Barr virus – a fascinating account of the man and woman duo of scientists (after whom it is named) who worked relentlessly to identify the virus that was causing so many cases of cancer in the 1960s