If you follow me on social media regularly, you will probably have noticed that I’ve been MIA from writing my blog for the last few months because I’ve been having intensive treatment for Lyme Disease at the private hospital I go to; Breakspear Medical, in Hemel Hempstead in the county of Hertfordshire in the UK (it’s just North of London). When I first told my friends and family I would be going to Breakspear for two months of treatment, they were all shocked and on the whole extremely confused… I was faced with questions such as, ‘What?! Why?! What’s happened to you?! Have you relapsed?! I thought you were getting better?! What’s wrong?!’ My response was along the lines of ‘Okay first off everybody CALM DOWN, EVERYTHING IS FINE, well not exactly fine because I’m sick as you all know but the fact I’m going to Breakspear for two months is actually A GOOD THING, (then I was met with lots of puzzled expressions)! The point is that I AM STILL GETTING BETTER and that is the reason I am going to do this treatment, because I AM FINALLY WELL ENOUGH / STRONG ENOUGH TO DO IT :)’ I spent the first year of treatment at Breakspear doing things very gradually because my body was in such a fragile state so most of the treatment was given orally i.e. treatment taken by the mouth (I don’t know why I’m explaining this but for some reason I am). After a year of oral treatment I was strong enough to try and introduce intravenous treatment (IV drips) usually through my veins in my arms – this didn’t go so well at first and my body had a bit of a shock but I slowly built up to get to the point where my body was strong enough to withstand the treatment it really needed! So you probably have two questions going around your head right now –
1. What was the treatment?
2. What was it for?
These are the questions I’m going to attempt to answer within this blog post…
***I’m just going to talk about the main test results / treatment I had because if I put EVERYTHING in this post it would be way too much both for me and for you! It will probably be too much info in any case restricting it to the most significant things … hahaha oooops my posts are always soooooo long but I can’t help it, I just have so much to say!
As you all know, I have Lyme Disease (or you should know by now because if you don’t that means I haven’t been doing a very good job at raising awareness!). Lyme disease is caused by a bacteria called Borrelia Burgdorferi and when this bacteria enters your body through for example, a bite from a tick, a mosquito, a horse fly, a flea or a spider (any insect that can bite you may be carrying Lyme disease) it suppresses the immune system. A suppressed immune systems means that common chronic viruses that many people have encountered in their past can become re-activated and cause havoc in the body! As well as old dormant viruses becoming re-activated, a suppressed immune system also means that when new viruses enter the body it’s unable to fight them off and reduce them to a dormant state like a healthy person’s immune system does resulting in the virus remaining active in the body and like I said, wreaking ABSOLUTE HAVOC – think volcanic eruptions, landslides, earthquakes, tornados etc… YES that scale of havoc is happening inside the body of people with Lyme Disease (and I’m not being melodramatic, most definitely not).
Here’s something extremely important you need to know about Lyme – every single person on the planet with Lyme disease is different – that is because the Lyme bacteria is the shape of a corkscrew (it’s known as a spirochete) so it can enter ANY and EVERY part of the body, therefore, the symptoms a person with Lyme Disease suffers depends on the part of the body it infects. BASICALLY / TO SUM IT UP = everybody has different symptoms and different clinical presentations of the same deadly disease.
The second important piece of information is that when someone has Lyme, they don’t just have Lyme because once your immune system is suppressed then anything is possible (and not in a good way) – this can include chronic active viral infections coming along with Lyme and many other nasty things that I will discuss along the way. For me personally, my viruses are one of the major players in my Lyme Disease due to the severe state of my chronically suppressed immune system so that is partially what I went to Breakspear for two months to treat…
In January 2016 I had test called ‘Viral Panel Comprehensive’ with ‘Immunoscinces Lab’ which found that the only active virus I had was Epstein-Barr Virus also known as EBV aka Glandular Fever. For you nerds out there who want to know the medical lingo in these test results below – IGG means past infection and IGM means current active infection.
In February 2017 (see results below), I re-tested the full viral panel, which found my EBV was now dormant YIPEEEEEE. This was after a year on the anti-viral drug Acyclovir orally, the anti-malarial drug Artesunate orally which also has anti-viral properties and many other anti-viral herbs (do you guys want me to name the herbs? I’m not sure how much info to include here?) HOWEVER (there’s always a however isn’t there! When there is good some bad must come along with it – it always seems to be the way with Lyme!) SOMEHOW ???? AND I DON’T KNOW HOW??? I had managed to acquire a NEW chronic active virus – when I say chronic I don’t mean an acute virus like the cold or the flu I mean one that stays in your body FOREVER. Whether it stays in your body and is active or dormant is another discussion altogether but chronic is different to acute. When you have a suppressed immune system, chronic is serious. How the **** did I acquire this?!?!? and why was it still active after all the anti-viral treatment I had been on?!!! Oh, I would also like to clarify something – the virus I had acquired is HHV-6 / Human Herpes Type 6 which is not the one you are thinking of!!! The groce genital one (thank god for that) but the type of Herpes that infects your organs… sooooo hmmm actually not sure which one I would have preferred, maybe neither of them would have been nice thank you very much?!
The good thing about these test results is that it showed that the anti-viral drug I was on, acyclovir, was effective because it had made my EBV dormant – this drug is available at Breakspear as an IV drip so it was time to go and get myself some IV acyclovir! My doctor initially recommended I had this drip twice per week for four weeks, which confused me because from being a busy body and little miss nosy at Breakspear, I knew that other patients usually had it three times a week not twice a week… my delightful doctor at Breakpear, Dr Jean Monro (we call her genius Jean) explained that she didn’t think my body was well enough / strong enough to handle it three times per week but me being me… of course I wanted to give it a go and prove her and my body wrong that my body COULD handle it. A few weeks in and I was seeing such vast improvements from the treatment mainly in terms of energy, whilst other patients said I was walking stronger, my eyes were brighter, I’d gained some healthy weight and I looked generally less sick so the decision was made that I should stay on at Breakspear a little longer if I could manage it so my treatment plan turned into a two month one instead of the one month one it originally set out to be! I began to notice that on the days I wasn’t having the acyclovir drips I felt much more sick compared to the days I was on the acyclovir (in terms of my viral symptoms) so we upped the acyclovir to five times per week providing that my kidneys and liver were doing okay, which were checked by blood tests each week. As well as acyclovir, to treat the HHV6 virus I also had a Vitamin C drip each day to help fight off the virus and when I say fight off I don’t mean get rid of it I just mean make it dormant so it’s not active in the body causing symptoms. I had 22.5g of Vitamin C each day in a three hour drip! There’s a lot of research coming out at the minute about Vitamin C and it’s powerful effects with helping to treat chronic illnesses and I think that generally the Vitamin C really helped me despite the fact that when I was on it and for a while after I had extreme herx reactions. *A herx is a Herximer Reaction – this is when an infection dies off so the dead toxins are floating around the body which in turn causes inflammation and a temporary worsening of symptoms. It’s difficult to believe that something is working when it makes you herx and feel so awful, but apparently a herx is a good thing because it means that the treatment is doing it’s job so you just have to persevere through! Herxing is the reason most people get much more sick during treatments and don’t notice any improvements until after the treatment has finished – because you can’t notice improvements when you have constant die off happening in your body. I also herxed on the acyclovir whilst the acyclovir drip would be going through my veins but that was nothing compared to the herx I experienced with the Vitamin C! In May 2017, four weeks into the treatment, I re-tested the HHV6 (see results below) to see how it was doing and most importantly to find out whether the treatment was working or not… and the results were in… the HHV6 had gone down! This was evidence that the treatment was working for me! YAY!!!
The other main thing I went to Breakspear to treat was STREP (see results below), also known as Streptococcal Infection which is a bacterial infection. YES I know, ANOTHER infection… we have already established I have a horrific immune system so my body is plagued with multiple infections. SO back to the strep… there are many different types of strep infections, ranging in severity from mild throat infections to life threatening infections in the blood or organs. This means just like Lyme, that there are many different symptoms of strep – click here if you want to know more. Two of the serious effects strep can have on the body is 1) damaging the kidneys and 2) cause bleeding of the gut and guess which lucky lady has both of these things! Problems with my kidneys have shown up on many of my blood tests over the years and I have been treated for recurrent kidney infections and recurrent urinary tract infections for as long as I can remember, well ever since I got Lyme because remember LYME SUPRESSES THE IMMUNE SYSTEM which meant I got strep AND IT FULL ON THRIIIIIVED. At least now we had an explanation for my inexplicable kidney problems! Back in January 2016 when I first went to Breakspear and did my first lot of tests, I had a Comprehensive Stool Analysis, which found red blood cells in all three samples, I then did a faecul occult blood test, which again found blood and THEN I cut meat temporarily out of my diet before repeating the test, which surprise surprise again found blood so I was bleeding from somewhere in my gut but the question everyone wanted to know the answer to was – WHERE?! Breakspear referred me to a gastroenterologist called Dr Preston at the London Digestive Health Clinic on Harley Street who did a colonoscopy expecting to find ulcers, crohn’s disease, colitis or some form of inflammation causing the bleeding but instead he found that the lining of my gut wall was stripped and he had absolutely no idea why. Now we know, that damn bacteria known as strep literally stripped the lining of my gut, causing it to bleed! Knowing my previous kidney and gut issues, as soon as Dr Monro found out I had strep she wanted me to start treatment straight away, literally the next day!
To treat the strep I had penicillin injections twice a week for two months. Penicillin is an antibiotic so that meant it co-incidently treated my Lyme as well. I re-tested strep half way through the treatment (see results below) and it had moved into the normal range YIPEEEEE!!!!! Both strep tests were done with ‘The Doctors Laboratory’ and were called ‘Antistreptolysin Titre’.
Now onto the next area of treatment – DETOX : Due to the fact I was treating HHV6, Strep & Lyme, this meant that A LOT of dying off was happening during my time at Breakspear (remember that super strange word Herximer reaction aka a Herx); this meant that it was essential for me to detox as much as I physically could to remove all of the dead infections / toxins from my body. Prior to this two month stint I had fallen in love with a potent antioxidant known as glutathione, glutathione shall we say, is my drug of choice. I began having glutathione IV drips in early 2017 to aid with detox and MY GOD WAS THE RESULT DRAMATIC… I would notice benefits of the glutathione drip after about twenty minutes of it entering my veins, in particular my energy would increase and my cognitive function would improve significantly; for example, before the glutathione drips I would be lying in a bed resting then afterwards I would be able to get out of the bed and sit in a chair for a while able to have small conversations with other patients. It was apparent to my doctor, the nurses and everyone I know how much I freaking love glutathione and therefore, that ideally I wanted glutathione drips as much as possible during my big stint at Breakspear! And so it was added to my treatment plan, one glutathione drip per day. I even have some scientific / medical explanation for you of why my body and I love glutathione so much; In July 2016 I had genetic testing (see the summary of the results below) called ‘DNA Genomic Toxic Profile’ with ‘Genova Diagnostics’ Laboratory to see how well my body can detox and the results were pretty much NOT VERY WELL AT ALL as you probably could have guessed! The results showed that I have many different genetic mutations, which mean my body can’t detox properly but as well as mutations I actually have genes that are absent – the absent genes that I have are the ones that are supposed to make glutathione, hence the reason I notice such great benefits from the glutathione IV. Hang on a second, I’ve just realised I haven’t even explained what glutathione is… whoopsie… Glutathione is an antioxidant that our bodies make naturally to assist with detoxing almost everything we encounter in every day life that is bad for us / toxic, out of our body. Glutathione also has many pre-cursors to it meaning that many different substances help make it – one of these is Thioctacid which is also known as Alpha Lipoid Acid or ALA. Therefore it made sense that I also had Thioctacid drips whilst I was at Breakspear for two months to help trigger by body to produce it’s own glutathione.
You are probably getting confused now (well my Lyme brain is anyway) with all the treatment I had so I will put it simply:
Every day I had…
- Acyclovir Drip – for HHV6 – two hour drip
- Vitamin C Drip – for HHV6 – three hour drip
- Glutathione Drip – for detox – one hour drip
- Thioctacid Drip – for detox – one hour drip = hooked up to an IV for 7 hours a day, 5 or 6 days a week for 2 months = 192 drips / 336 hours of drips WOW
- B12 injection (I’m not deficient in it, it just gives me a boost of energy)
Twice a week I had…
- Penicillin Injection – for Strep & for Lyme
Every now and again I had…
- Iratherm Sauna (I had these every day at the beginning to assist with detox but it was too much for me on top of all the other treatment, to put it simply my body couldn’t handle it so I had to stop having them)
Each week whilst I was at Breakspear I had to have Haematology & Biochemistry blood tests, which are general blood tests that check to see if the basic functioning of the body is working correctly – it is a test a GP can do on the NHS and is a test that the NHS use as their first point of call when investigating symptoms or trying to find indicators to what is wrong with a patient. I won’t add in all of these results though because mine were on the whole okay with just a few slight hiccups along the way. Each week during my lengthy stay at Breakspear I also had consultations with a team of specialists to see how things were going. Each week I had a consultation with my main doctor, Dr Monro, then I would have them more often if and when they were needed. I also had regular consultations with my new doctor who is a specialist in neurological Lyme disease; Professor Puri as well ones with the main neurologist at Breakspear, Dr Julu, my nutritionist, Ron and my psychologist Daniel. After each consultation a summary was written by Dr Monro (my lead doctor) and sent to my GP to keep them updated with my case so I have included some of these as I thought it might be an easier way for you to understand my time there then me explaining everything word for word myself. You can see these letters below…
I realise that was probably very complex and perhaps overwhelming for you to read / absorb but it’s only because of the complexity of my situation (not everyone with Lyme is like this so if you are newly diagnosed with Lyme and are reading this please don’t freak out!) Dr Monro often explains, ‘Emma as we know, you were a very sick young lady and you still are a very poorly young lady because we know that you are a very complex case.’ Hence the amount of detail / information I’ve included in this blog post!I really hope that I’ve provided enough information within this post to help someone out there somewhere 🙂 Over the last couple of months I happened to meet many people at Breakspear who told me that the reason they were there is because of my blog so it is those patients who have inspired me to write a new post (and also because the treatment has got me well enough to actually write a new post!!!). One of the greatest highlights from the past couple of months has to be the people I have met along the way; the patients at Breakspear, these people, are some of the strongest, bravest and the most courageous people you could ever imagine. They have been in the darkest places and have still been able to see the light, they have travelled to every corner of the earth (literally) on a quest for answers and looking for the journey to survival. Many of them have Lyme, whilst many do not. No matter what the disease, what the title, what the symptoms of the chronic illness, they are all fighters on a mission to not just survive but to live, with the hope that one day they may live again, not to just merely exist but live a life full of laughter, a life full of love and a life full of health and happiness because that is what each of us who graces this planet truly deserves. Each one of you, from your own walk of life, if you happen to be reading this now, I am grateful to have met you and it is my honour to have shared a small piece of my journey with you.
So here I am, sitting and waiting, well lying and waiting lol because I still spend the majority of my life lying in a bed or on a sofa. So as I lie here, I’m waiting for the drugs to leave my body, for the herxing to stop, and to see what the treatment has actually done. I already see some benefits, I really do but there are many questions that are still left unanswered. I also await test results to see how the infections are doing by the way of scientific evidence, the unequivical proof.
So what’s next for me? Since leaving Breakspear I’ve moved into a new house because I’m literally allergic to the house I was living in before – Dr Monro actually told me I won’t get better if I carry on living there! It’s my sister’s house that I’m living in, which she is kindly letting me stay in it for a while whilst she is living elsewhere 🙂 I guess you could say I’m seeing what happens, waiting around, praying for some kind of miracle that the treatment is going to do something to my body which aids my recovery on a path to better health. Whilst we piece together the oh so complex pieces of my puzzle, as a family along with my incredible team at Breakspear we are waying up the options and making the decisions on what the next step in my treatment should and will be. For now though, here is my current treatment plan put together by my wonderful nutritionist, Ron, which is based on all of my test results and recommendations from Dr Monro over the last two months:
I aim to do as much as I can to raise awareness about Lyme disease because the more we do to become more aware, the more people in society will benefit and potentially be helped. As you know by now, people with Lyme disease experience a host of symptoms including, recurrent bacterial and viral infections, sinus issues, stomach issues, heart problems, major organ issues, increased sensitivity to foods, joint pains, muscles pains, dizziness, neck stiffness, fatigue, fevers, chills, brain and cognitive dysfunction, as well as mental health issues such as anxiety and depression. Currently, one of the worst symptoms of my Lyme disease is the migraines I experience so here is a little bit of information about them – there are many different types of migraines I experience and I’ve experienced them since I was a child, yes that’s right children have Lyme disease too! Here’s a short presentation to help you understand just one of many symptoms people with Lyme disease experience… and a big thanks to Diamond Headache Clinic for providing the presentation!
If anyone has any questions then don’t hesitate to contact me, in the comments section down below, via email or via my social media channels. If there is anything I can do to help anyone not have to go through what I’ve been through then that is what I hope to achieve via this blog and the suffering will have been on that level not in vain. If you’re not already a follower; you can follow me on Instagram @myblondevoyage, Twitter @myblondevoyage, Snapchat @emma_louise999 and Facebook @Blonde Voyage for daily updates on both my recovery and my personal life 🙂
Also guys I’m thinking of starting a youtube channel and filming the next stage in treatment whatever that may be, what do you guys think???? Any suggestions or ideas for videos???
I always say this but I’ll try not to leave it too long before I write another blog post!
Bye for now! Emma x