I know everyone is wondering, what happened to you? Why aren’t you any better? Why are you WORSE?! I know this because I get asked these questions day in and day out, over and over again, why, WHY, WHY?! and I’m tired; tired of hearing the same questions and tired of giving the same answers. So I thought the solution to this would be to answer them in one big blog post for everyone to see 🙂
So lets start with the most important question – WHAT THE HELL HAPPENED???????
Something happened, it did, we know that now, in mid-May 2017 – at first I didn’t know what but now I can pin-point my finger to the EXACT day everything began to come crashing down. It was during my two month stay at Breakspear from April-June 2017 for various treatments, which you can read about in great detail in my previous blog post here or I can attempt to simplify the three part treatment programme for you below:
- Anti-viral treatment for the chronic active viral infection HHV6
- Detox treatment for various toxins
- Penicillin antibiotic injections for the bacterial infections strep and Lyme Disease
April 2017: As you can see with the ‘number 1’ above, I turned up at Breakspear for that two months with just one chronic active virus HHV6 (human herpes type 6) – the one that infects your organs not the unfortunate genital one you’re thinking of! SO let’s just rewind a little to the start of my Breakspear journey in January 2016 when I was first tested for chronic active viruses with a comprehensive viral panel – the results clearly stated that back then I had only one chronic active virus called Epstein-Barr Virus (EBV), which is also known as Glandular Fever (GF). I received treatment for this from January 2016 onwards and my viral symptoms were improving throughout 2016 until around November time when something happened and they got DRASTICALLY worse. Once Christmas was out the way in the January of 2017 I re-tested the viral panel and received the results around March 2017 time, which found that my EBV / GF was actually now dormant yay!!!!!! This meant that the treatment had worked BUT somehow I had picked up HHV6 along the way?!!? Many people don’t understand how it was possible for me to pick up HHV6 once I had already started going to Breakspear but despite my health improving throughout 2016 I was still very sick and had a severely suppressed immune system. Around the time I got these results I also found out that I had the bacterial infection, strep so it was time to go and get myself some new and more aggressive treatment for both the HHV6 and the strep. By this point in time, I had already recovered / improved from around 0% to 30% which meant I was much physically stronger so I could do more aggressive treatment so I went down to Breakspear in April 2017 for two months to treat the viruses with acyclovir & vitamin C drips, to do detox treatment with an Iratherm sauna, glutathione & thioctacid drips and to treat the strep and the Lyme with penicillin antibiotic injections.
May 2017: Each week for the first month I was improving sooooo much!!! Everyone around me could see it and it felt SO good to know that the treatment was working. Then around 5-6 weeks in everything slowly started to spiral as my health unexpectedly flew off track. Do you want to know what happened??? If you’re new to reading my blog I’m not sure if you will believe me or the reason why I’ve recently become so much more sick because the cause of this mammoth / giant / huge / devastating relapse is actually a cold. YES YOU HEARD ME CORRECT – a god damn cold. Or some kind of acute viral infection, most likely a cold. However, if you have read my blog before then you know what happens to me when I catch such a thing, it’s SERIOUSLY detrimental to my health and all hell breaks loose (and that’s putting it mildly) because my immune system is so messed up! Generally it’s difficult for me to tell when I pick up something acute on top of everything else because I already have all of the symptoms of a cold/flu all of the time anyway so it’s usually when I’m feeling worse (thinking it’s just a flare up of my current conditions) but then other people around me are getting ‘colds’ or ‘flu’ when I realise I’ve actually acquired something new. I vividly remember that everyone else around me had it too – the other patients, my friends, the staff etc etc.. So since then each week from there on out I’ve gone spiralling down and continued to do so whilst initially being told by EVERYONE that it was ‘just a herx reaction’. Remember the word herx from my previous blog post? Herxiemer Reaction meaning the die-off of infections which causes a temporary worsening of symptoms. All the other patients at Breakspear were telling me it was happening to them on the treatment as well! It meant that the treatment is working! Or so I foolishly believed so. I remember on my last day of treatment, having to leave the ward because someone had ignorantly entered wearing some kind of non-natural toiletries – I have severe Multiple Chemical Sensitivity (meaning chemicals make me VERY sick) and Breakspear is meant to be a chemical free place so I left the ward and ended up lying on a table top in the dining room / waiting area unable to sit up, unable to lift my head to speak, with a drip in my arm, questioning my doctors son ‘Fred (fake name) what is happening to me??? I feel like I’m dying. What has this treatment done to me?!!’ He said he didn’t know as he walked away and I was left at that table wondering what the hell is actually going on?!
June 2017: I returned home at the beginning of June after my two month stint, to a new home, a home that is supposedly more chronic illness friendly, a home that is theoretically better suited to me and a home which hopefully will aid me in my recovery. I was told by many of the other patients, the nurse and the staff at Breakspear that after a few weeks off the treatment, once the drugs had left my system, I would begin to reap the rewards so I sat and I waited for those improvements to come but it breaks my heart to say that sadly they never came and I never did see the benefits that I was supposed to see. As the days went by my health rapidly deteriorated as I became more and more sick. Within a week or so of leaving Breakspear I knew something was up, deep down I knew something wasn’t right but I had so much riding on this treatment working, my health, my life, my future was at stake so I couldn’t bring myself to admit to myself let alone anyone else that I had a feeling that there was much more to this than originally met the eye. It was around two weeks after returning home, my mum came over to help me as she does so, each and every day, when she said to me, ‘Emma what is going on? What has happened to you? Is there something I don’t know? Something you’re not telling me?’ I broke down in tears crying in my mums arms, ‘Mum I’m so so sick.’ and her response was, ‘I know you are. I know.’ This moment made me realise something had to be done.
The next day during an urgent phone call to my doctor, it was decided that I would re-test the viral panel because something surely wasn’t right. And so once again we waited in anticipation and we waited with silent hope for the results I so desperately wanted but part of me didn’t need to wait because part of me knew, I didn’t need a test result to tell me how I was feeling, a test result to tell me the truth. I remembered so clearly this is how I felt when I first went to Breakspear, the swollen glands, the swollen face, ballooned out with numerous chins were the outward signs that showed what was happening inside of me and for sure it was the EBV. When I first went to Breakspear my doctor diagnosed me with EBV/Glandular Fever just by looking at me, my face was five times what it should have been and along with my horrific symptoms she knew it was EBV. I don’t wish to speak about the symptoms in this post because they are still here as I write this, battling away – I try my best to block them out to manage to get through each hour, and to make it through each day.
It’s difficult for me to put into words how this felt, a relapse to this degree. I know that I keep switching between past and present tense which may be confusing for you but I’m still in it and still processing it which makes it tough to write about to say the least. When you feel your world tumbling down around you, collapsing at your feet, it’s tough to describe and tough to admit the defeat. Everything I’d worked for and endured over the last year and a half was reversing as quickly as it had improved. As my physical health deteriorated I could measure it in time, this is how I felt 9 months ago, 10 months ago, 11 months ago, 12, 13, 14 and it went on and on. All that treatment, all that money spent, all that energy, that hard work was gone, vanished, disappeared into thin air, crumbling around me, running further and further away from me, out of arms reach as if it had never even existed in the first place. Did my initial improvements even happen? Were they real? Was it all a dream? My head swam with questions and I began to wonder, what was the point? What is the point? If we buy the best treatment money can buy (in the UK), I improved to the point I did and something as simple as a cold came along only to take it all away. If I improve again, every time I catch a cold will this happen over and over, again and again? It’s too difficult, it’s too much. I can’t do it, I just can’t do it anymore. I can’t live another day longer like this. I give up! I’ve uttered these words too many times over the last few months, over and over, again and again. It scares me to think that I may die without having really lived. What did I do? Seriously what did I do? Why me? I began to question resulting in dark and disturbing thoughts but this didn’t last long because self pity makes me feel physically sick, it’s just not me and I’m made of stronger stuff mum keeps telling me and lets face it – I didn’t do anything, those who are sick didn’t do anything, none of us did, we don’t deserve this but it’s just the life we were dealt – it’s like a game of poker, and it’s as simple as the luck of the draw, the cards we have been dealt.
However the test results were in and what I feared and what I dreaded was confirmed by that tiny piece of paper, that alarming slip through the door. My heart felt like it shattered into a million tiny pieces and my soul broke in two with the weight of that knowledge yet despite being made of strong stuff, I slowly slipped into a deep and dark depression. Those weeks that went by were some of the toughest I’ve ever had, they still are, I’m still in it as I write this and the days oh so slowly wander by. I mean it’s hard when you lose your life the first time and then you begin to gain it back. But the second time around, there are no words, I guess it feels like you are drowning, drowning, with rocks tied to your feet yet no-one can throw you a line. Life is unpredictable and control is just an illusion and sometimes all that unpredictability is overwhelming and it makes us feel small and powerless, where everything is dark for days hoping for just a little speck of light. No one knew how bad it had actually got and how bad it still is. I don’t wish to go into great detail of my physical disabilities it’s too painful to speak about how much I’ve regressed. Trauma and pain feel like they’re going to last a lifetime and I think people forget that sometimes yet I’ve kept up a fascade on social media, a fascade of courage and hope because that’s what kept me going during this deep, dark and desperate times.
Humans are a social species and we rely on connections to survive. Even the most basic social interactions help keep us alive so it’s my friendships which are keeping me going, keeping me from giving up and keeping me alive. We all need it, human contact. All these hours I’ve spent and continue to spend lying in bed within these four walls, a spectator to the world as I watch it through the windows of TV, social media and news of the world. I have to acknowledge that it’s passing me by and I can’t describe how lonely I’ve felt and how desperate I am to actually not feel this way for just a moment longer in time. No one knows what is truly going on in another person’s life and you never know how what you do will affect someone. So here is a piece that I’ve written and had published about friendship because it’s friendship that has kept me going during this oh so difficult time…
JULY 2017: Numerous talks occurred between myself, my parents, my main doctor, Dr Jean Monro, my secondary doctor, Professor Basant Puri and my nutritionist Ron to put together a treatment plan to tackle my re-activated Glandular Fever. The new treatment plan is a four parter which I will describe for you down below…
- New anti-viral treatment to treat the EBV and new treatment to strengthen my immune system – I’m taking all of the treatment to fight off the EBV that I started when I first went to Breakspear way back back in January 2016. As I wrote earlier on in this blog post, during my two month stint in April-June of 2017 I also did IV anti-viral treatment with Acyclovir and Vitamin C drips with an attempt to make the active HHV6 infection dormant – that clearly didn’t work though did it because when I left Breakspear after those two months yes the HHV6 levels were lower so the treatment had done something but it was still active and somehow my EBV had become re-activated as well! The thinking behind this is that I had become resistant to the anti-viral drug Acyclovir… Even though this combined treatment hadn’t done what I had hoped for (making the HHV6 dormant and leaving Breakspear after two months completely viral free), Ron the nutritionist did say something to me which made a very good point, he said, “Imagine if you hadn’t have done that treatment, you would be in an even worse state than you are in now.” This changed my perspective on the whole thing because actually he’s right I am glad that I did it because I don’t want to imagine how much worse I would be if I hadn’t. I sometimes reflect on these things and the question which always surfaces is, imagine if I didn’t go for that two months then I wouldn’t have caught that cold would I? Although I know with chronic illness you can’t think, ‘what if?’ because I could have caught a cold anywhere and it’s a variable that was always going to come into play at some point at another moment in time. So it was time to change up my treatment plan with the help of my Breakspear team to help tackle the EBV!
We totally stripped back what I was taking each day to keep it at things for viruses and the immune system that I was currently taking, things to support my genetic mutations, things to support my psychological symptoms, things for candida and things I was taking for the colonic flora programme, which I started back in June once I’d left Breakspear. My body is a lot weaker now than it was a few months ago so it can’t handle as much supplements and medication which is partially why we’ve stripped it back to the bare essentials. Something also needed to change because clearly what I was taking each day wasn’t working for the EBV so we also added in NEW supplements and medications specifically for the viruses and for the immune system. The new things I’m taking are:
- VALTREX/VALACYCLOVIR by GlaxoSmithKline – this is an anti-viral drug which I have started to take in replacement of the anti-viral drug acyclovir because it’s likely that I’ve become resistant to the acyclovir after taking it orally for a year and a half and every day for two months in IV. To summarise it isn’t having the same effect it had when I first started taking it in Jan 2016 for EBV – it made the EBV dormant the last time around but sadly not this time.
- IMMUNOVIR/ISOPRINOSINE by Kora Healthcare – this is an immune modulating drug so it doesn’t actively fight off viruses instead it aids the immune system. In a study of 16 Chronic Fatigue Syndrome patients it found that it increased natural killer cell activity and resulted in a clinical improvement in around 60% of patients. You can read more about natural killer cell activity here.
- LITHIUM/PRIADEL by Sanofi – this is a naturally occurring medicine used to treat mood disorders such as bipolar disorder, hyperactivity, rushed speech and poor judgment. It also has anti-viral properties and anti-aging properties.
- L-LYSINE by Pure Encapsulations – this is an essential amino acid, meaning that it can’t be produced by the body on it’s own. It helps strengthen the muscles and the immune system. It is also a natural stress fighter so it can help with anxiety. By the way it can actually get rid of cold sores within a couple of days !
- GENE-EDEN-VIR – this contains selenium, camellia sinesis extract, quercetin, cinnamomum extract and liquorice extract. It contains natural anti-viral treatments called flavonoids that help the immune system.
- OLIVE LEAF EXTRACT by Pure Encapsulations – this is a natural source of health made from fresh olive leaves for antioxidant support which was first used medicinally in ancient egypt as an extract, a herbal tea and a powder. The leaf contains phenolics which as well as antioxidants also have antimicrobial and cardiovascular benefits.
- ANDROGRAPHIS by NOW Foods – this is a plant native to India and Sri Lanka. It is widely cultivated in Southern and SouthEastern Asia, where it has been traditionally used to treat some infections and some diseases. It’s part of the Buhner herbal protocol for Lyme which I was on for over a year and stopped in April 2017 when I started two months of penicillin injections for Lyme. Now i’ve finished the injections I’m going back on this herb.
- ELEUTHERO/SIBERIAN GINSENG by NOW Foods – this is a species of a small woody shrub native to Northeastern Asia and often used in Chinese medicine. It has an ability to help relieve stress, increase cognitive function, boost the immune system, reduce fatigue, lower inflammation, protect heart health, prevent degenerative diseases and boost respiratory health. It’s basically a winner in the herbal market! It’s also part of the Buhner herbal protocol for Lyme which I was on for over a year and stopped in April 2017 when I started two months of penicillin injections for Lyme. Now i’ve finished the injections I’m going back on this herb as well.
Below is my new treatment plan which I follow / do / complete / take each and every day…
2. To do more Low Dose Immunotherapy (LDI) treatment – the thinking behind this is that if I build a new LDI vaccine with various, foods, chemicals, supplements and medications I encounter in everyday life then I will spend less energy having reactions to these numerous different things. Also less energy spent on reactions means there is more energy available for my body to fight off the EBV. LDI also helps strengthen the immune system because it is my immune system that is reacting to everything so less reactions will be less of a burden on the immune system and reduce the total load. I have already been to Breakspear for a week to build this new vaccine at the end of June 2017. Here are the items below, which make up my new vaccine:
3. A plan to gradually come off some of the medication I take for pain… the thinking behind this is similar to the LDI in terms of energy… I have many genetic mutations which mean I have HUGEEEEEEEE problems with detoxification. I also take A LOT of medication for various types of pain which need metabolising and detoxifying in my body so my doctor believes that I may be spending a large amount of the limited energy I do have trying to metabolise and detoxify these medications. Therefore, if I come off some of them, in theory my body will have more energy to fight off the EBV. I saw Professor Puri whilst I was at Breakspear building my new vaccine and we made a plan for me to come off some of the medications slowly and safely. I don’t advise anyone to do this without a professionals help because coming off certain medications can have significant withdrawal and side effects. I’m pleased to say I have already gradually come off the Gabapentin and I’m currently weaning myself off the codeine 🙂 I’m willing to do anything to get rid of this EBV so I don’t care how much more pain I will be in if it’s going to help!
4. I’m off to Breakspear for two weeks of intense detox treatment… The thinking behind this is that if my body is not spending so much energy detoxing all of the crap inside of me then it will have more energy to fight off the EBV. I’ve been doing detox treatment regularly since starting at Breakspear a year and a half ago to get rid of carcinogenic adducts attached to my DNA, toxins blocking my mitochondria, toxic compounds in my blood and heavy metals that were found in hair and blood tests but due to my many genetic mutations I have serious problems with detox so it’s a difficult task for my body to get rid of these things even with all this extra treatment! At the beginning of this year I re-tested some of these things and there are less toxins in my body than when I initially went to Breakspear but there is still a long way to go so I have a two week treatment programme planned to give it another go! Each day during my two week stay I will attempt to do an Iratherm infrared sauna, a glutathione drip, a thioctacid / alpha-lipoic acid / ALA drip, a B12 drip and a D2 drip which contains many different vitamins, minerals and amino acids. This is happening at the end of August so fingers crossed I will notice improvements after this 🙂
Here are some of the letters written by my doctors at Breakspear about the consultations which I’ve had with them recently…
To finish off this blog post I would like to write a little about what glandular fever actually is because something happened to me recently which makes me think I’m not doing a very good job at educating people about it!!! So I guess all I can do is try, try and try again 🙂 So here are some ‘fun facts’ about glandular fever:
Gandular Fever is a type of viral infection caused by the Epstein-Barr Virus which is also known as infectious mononucleosis or ‘mono’. The most common symptoms include, a high temperature, a severely sore throat, swollen glands in the neck and extreme fatigue. WHICH YES I HAVE THEM ALL ALONG WITH MANY MORE! WOOOO LUCKY ME. If you are a healthy person who catches glandular fever then the symptoms CAN BE very unpleasant, this isn’t in all cases though and the symptoms should typically should pass within 2-3 weeks but the fatigue can last several months in some rare cases. The virus is found in saliva and is spread through KISSING! It is much more difficult to catch than the common cold of the flu. It states on the NHS website that there is no need to avoid contact with other people if you have glandular fever because the chances of passing on the infection are generally low so there is no need to isolate yourself from others. And guess what… 98% of the population are actually immune to glandular fever! This is because at some point in time most adults will have already come into contact with the virus, many without knowing it or without developing symptoms because they have a strong immune system which also means if they come into contact with it again, they are already immune. The reason I have been so sick with glandular fever for so many years is because I have a severely suppressed immune system caused by Lyme Disease so my body has never been able to fight off glandular fever properly like a healthy person does. Last year when I started to get better it’s because my glandular fever was going away and the reason I have got more sick again the last few months is because I caught a common cold which suppressed my immune system a tiny bit more than it already is and in turn made my glandular fever flare up and re-activate. There is no need to stay away from me because I have this. I am not contagious. You will not catch it and I will not make you sick from simply being around me. If you have any questions PLEASE ASK – don’t just assume and make your own judgements about me and my illnesses, it’s ignorant and can be cruel at times. In the mean time I will continue my quest to educate others and raise awareness with the hopes that other people don’t have to go through some of the things that I’ve been through just because I’m the sick girl or the odd one out.
So what’s next for me? I guess once again we just wait and see. The last few months have been another reminder that sometimes the future doesn’t unfold the way you think it will and sometimes things just happen to you, they just happen and you can’t help it but I have hope and I hope that by September we will have a clearer and more positive picture of what is to come. By then I will be on all my new viral treatment, off some more of the pain meds, my new vaccines will be starting to kick in and I will have some detox treatment under my belt so fingers crossed this will all help me take a step forward instead of backwards in this oh so bumpy road to recovery! I’m steadily learning that it’s not what happens but it’s what you decide to do about it that counts so I suppose I will be back again in September with an update, and fingers crossed a better one at that!
If you have any questions feel free to ask and I will try my best to answer them 🙂
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