Food / Diet / Nutrition

Hey guys, I know I haven’t written a new post in a while but that’s nothing new is it! I’m hoping that this year I will be well enough / able to write one new post per month so I’ll be sharing lots of info with you guys throughout the year :). If you are already following my blog or any of my social media accounts (mainly Instagram @myblondevoyage) then you will know that I often post about the food I eat, my diet and the role that nutrition plays in my treatment plan and recovery from chronic illness. I thought I would write a blog post explaining why I eat what I eat; offering tips & tricks about food and nutrition that may help you on the road to recovery if you are also dealing with chronic illness but if you aren’t sick and simply would like to lead a healthier lifestyle then this may be helpful for you as well!

Before I was super sick I must admit that my diet was pretty different to what it is now… you could have called it ‘the beige diet’ which consisted of anything that came in a variation of the shade beige! That included pasta, crisps, breadsticks, pizza, chips, crackers, cereal and anything else you can think of in the form of carbohydrates… and obviously the colour beige. My friends, family & me can’t help but laugh when we look back at what I used to eat because when you compare it to what I eat now it’s literally the polar opposite! I think the reason I previously ate this way is because when I first developed symptoms at the age of 12, I was so desperate for fuel or ‘energy’ that I gravitated towards carbohydrates and sugars. Then as I got older and couldn’t take care of myself properly when living away from home in terms of not being well enough to cook I used to live off the most accessible food available, meaning whatever was the easiest to eat with no thought or effort gone into it whatsoever which usually meant food that came in some form of beige! It was only when I was trying to figure out what was actually wrong with me, health wise I discovered a fantastic book by Dr Sarah Myhill called ‘Diagnosis and Treatment of Chronic Fatigue Syndrome: Mitochondria not Hypochondria’ that I began to realise the importance of diet and nutrition in recovery. I highly recommend this book to anyone suffering from a chronic illness where fatigue plays a part in your symptoms or if you have a diagnosis of CFS/ME, Fibromyalgia or Lyme. You can buy the book from Amazon here.

There is one chapter in the book which is specifically about diet and goes into great detail about a diet known as ‘The Paleo Diet’. The paleo diet is also known as the paleolithic diet or the caveman diet because it’s the same diet our human and prehuman ancestors ate and lived on millions of years ago with remarkably high levels of health during the Paleolithic era. The reason this diet initially intrigued me so much is because the physical make up of our bodies hasn’t changed much since our ancestors who lived during the palaeolithic age yet our diets have changed drastically due to the agricultural revolution which has caused the current world we live in to be rife with sickness and all sorts of chronic illnesses, with a large part of that being down to the change in our diet and what we now choose to eat. I was so intrigued by this diet because the pros and cons of it all made so much biological sense to me (I studied Biology for A Level which is the most useful thing I ever did at school considering the situation I’m in now). So I decided to give it a go! It made sense to me to go back to eating what our bodies were literally designed to eat so before I knew it I was ordering Paleo books off Amazon left, right, and centre. The first book I bought is called Paleo Solution: The Original Human Diet which is one of the best paleo books I’ve ever read and would recommend as the first step if you are about to embark on the paleo diet! Its not actually a diet but more a way of life. You can buy it from Amazon here.

So here is a little about the paleo diet so you know what you can eat and make sure that you know all about the naughty sinners (what you can’t eat). The paleo diet consists of eating only lean meats, sea food, nuts, seeds, seasonal fruits and vegetables. Which means no grains, no legumes, no dairy, no refined sugar, no processed foods and no foods containing artificial colourings, flavourings or additives. So why no grains (wheat, barley, maize, rye, rice, oats, quinoa, millet, cornmeal etc) is the first thing that most people ask??? The so called ‘essential carbohydrates’ that we are told by the mainstream media and the government are essential actually aren’t that essential because unlike fats and proteins they aren’t essential to life and have no real benefits because we can get all of the energy we need from fruits and vegetables which is probably a surprise to most people! It was to me. Fruits and veggies also have an amazing amount of nutrition to offer on top of their relative carbohydrate content and in addition to vitamins, minerals and antioxidants, fruit and veggies contain a host of substances known to fight disease so it’s best to get your carb source from these rather than what you and I typically know as ‘carbs’. Grains don’t offer any additional nutritional value and all they do is cause sugar and insulin levels to spike in the blood which contributes to a wide variety of long term health conditions; if you compare a 1000 calories of fruit and a 1000 calories of veg with a 1000 calories of supposedly healthy grains, you find that grains don’t provide the RDA for much of anything whereas eating fruit and veg is like taking a nutritional supplement. On a side note… I make sure that I buy organic fruit and veg wherever possible because organic generally means involving non synthetic pesticides, insecticides and fertilisers which is SO important because regular pesticides, insecticides and fertilisers are chemicals that are SOOOOO toxic; it’s unbelievable that they are even legal because the toxins accumulate in our bodies and contribute to multiple chronic illnesses!

So what do you typically eat in a day if you follow the paleo diet? Even though the paleo diet doesn’t include dairy (this is because dairy causes inflammation leading to a whole host of problems) it still includes eggs because eggs are such a good source of protein so for breakfast I usually eat eggs with tomatoes and mushrooms or I make a green smoothie full of lots of delicious fruit and veg; today I made a smoothie with celery, kale, romaine lettuce, apple, lemon, flaxseed, coconut water and coconut milk! I substitute dairy milk with nut milks such as almond, coconut, hazelnut and cashew because nuts are also high in protein and high in fibre and many other nutrients such as vitamins and minerals. Then for lunch and dinner I generally eat meat and vegetables, in the form of soups, salads or hot meals. I also try to buy free-range, organic and grass-fed meat wherever possible because grass-fed meat is where the animals are fed grass instead of grains (carbohydrates). When animals are fed grains it alters the omega 3/omega 6 fat ratio, disrupting their digestive system and in turn making us inflamed when we eat the meat. Meat that isn’t grass fed is also made to get the animal fat, as quickly as possible by feeding them grains so buying grass-fed meat also helps the animals because it doesn’t subsidise the quality of the meat to make it more economically viable. Therefore by choosing grass-fed meat it’s the largest step you can take to make an economic vote for how your food is produced. Also grain feeding the animals causes a high acid environment inside the animal which allows bacteria such a E.coli to reproduce and become acid resistant; so then when we eat it our acid producing stomachs cannot kill the contaminated food! Basically grains = DISASTER!

Another thing we don’t eat on the paleo diet is legumes; so why no legumes you may be wondering? Legumes (lentils, chickpeas, beans, peas, peanuts, soybeans are just a few) contain a compound called phytic acid which moves around the body sweeping up all of the vitamins, minerals and nutrients, clumping them together and dispersing them so we are unable to utilise them which is the last thing our bodies need especially if you are sick, we want as many vitamins, minerals and nutrients as possible! I must admit that the paleo diet is quite a limited diet compared to the average diet in the Western world in this day and age but you can make the food and cooking more exciting by incorporating herbs and spices into EVERYTHING! Such as some of my favourites, ginger, basil, coriander, onions, shallots, garlic, pepper, mint, cinnamon and rosemary. Most herbs and spices have health benefits as well which makes them even better :). If you get hungry between meals it’s best to snack on nuts, seeds and fruit instead of the sugar laden food most people eat! Sugar is a big no no for all sorts of reasons; it causes inflammation, spikes blood sugar and insulin levels in the blood which can contribute to a whole host of complex chronic illnesses. This is just a summary of the paleo diet, so if you are interested in learning more about it then you can buy another really good book here which was written by the founder of the paleo diet Dr Loren Cordain.

I began this diet back in January 2015 after reading Dr Myhill’s first book, so I had already been doing it for a year before I started attending the private hospital I’m under, Breakspear Medical, back in January 2016. I didn’t realise it at the time, but when I started at Breakspear I actually knew quite a lot about diet and nutrition and how food can adversely or positively affect your health, so when I first met my nutritionist at Breakspear, Ron, in January 2016, he told me that most patients have to completely change their diet when they arrive at Breakspear. However, he said I actually had one of the best diets he had ever seen! This made me so happy because I had been trying so hard to do everything I possibly could to get myself better from my bed (literally from my bed) and it meant that I didn’t have much to change apart from some of the things he wrote about in his report from my initial consultation with him, which you can see below… most of which was based on my symptoms and initial test results.

 

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As you can see in point number 2 above ^^^ I have gut issues (a really good book I highly recommend to learn more about the gut is literally called GUT by Giulia Enders which you can buy here) so the balance of the colonic flora in my gut is disrupted mainly with candida which is a type of yeast that everyone has in their bodies (even healthy people). However, when the immune system becomes compromised and suppressed like mine is, then the immune system finds it difficult to keep the candida in check so it becomes overgrown in the GI tract. Sugar feeds candida which is just one of many reasons I now follow a sugar free diet, even natural sugars such as honey, agave syrup or maple syrup and fruit feed the yeast so it’s important to limit even your intake of natural sugars; I eat up to 2 portions of fruit per day as my maximum sugar intake and chose fruits that have a low glycemic index (GI) because these have the lowest sugar content. I also try to choose vegetables with lower GI so this means avoiding starchy vegetables such as potatoes, sweet potatoes, swede and squash. You can see the fructose content of fruits and some veg in this chart I was given by Ron my nutritionist below…

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Antioxidants are SO important in recovery from chronic illness; hence why you will probably hear a lot about them if you are already poorly and hoping to recover or healthy and trying to prevent chronic illness from happening in years to come! A high intake of antioxidant vitamins and minerals from fresh fruit and vegetables is one of the best dietary strategies you can adopt to improve chronic illness and reduce the risk of chronic illness in the future. Unfortunately, when cereals, dairy products and processed foods displaces fruits and vegetables, they automatically lower your intake of health-giving antioxidiants from fruits and veggies which is yet another reason to give the paleo diet a go because it can help prevent health problems that are a direct result of our environmentally polluted world. Some of the health issues I have require high doses of antioxidants in my diet, these health problems include mitochondria dysfunction issues (where the parts of the cells that make energy don’t work properly), mould toxicity, heavy metal toxicity and environmental pollutants stuck inside my body such as pesticides, herbicides, fertilisers and chemicals found in plastic and stainless steel. I have acquired a toxic load burden inside my body that it can no longer handle because we are regularly exposed to numerous toxic substances that didn’t exist 100 years ago which contribute to chronic illness. In addition I have multiple genetic mutations and methylation issues which mean I can’t detoxify properly in the same way a healthy person can. It’s clear that to help improve the mitochondrial function and to help excrete mould, heavy metals and toxins out of my body, it needs as many antioxidants as possible! Antioxidants are found in lots of different foods, mainly in fruits and vegetables which make them some of our most powerful allies in the war against disease and there is one antioxidant which is particularly beneficial called PQQ. I took this for a while as an oral capsule but PQQ is also found in many different foods so you can easily increase your uptake of PQQ in your diet, as you can see in the chart below…

 

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From my experience with speaking via social media and face to face, to hundreds if not thousands of people with chronic illnesses over the last couple of years, it seems that many people either have an issue with becoming overweight or underweight once they get sick. The paleo diet is great if you want to lose weight if you are overweight because it cuts out all of the naughty things that make you gain weight. It’s also great if you are underweight and want to gain weight in a healthy way because you just increase the amount of paleo foods you eat and the portion sizes in your diet. When I first went to Breakspear in January 2016 I was severely underweight, weighing just 6 and half stone so I was put on a weight gain programme by my doctor, Dr Monro and my nutritionist, Ron which you can see in the table below. I also increased my intake of healthy fats such as avocados, nuts and seeds and ate multiple different oils by spoon each day e.g. flax seed oil, evening primrose oil, walnut oil, coconut oil, avocado oil, no vegetable oils though because they aren’t very good for you (they are high in omega 6 and low in omega 3 which leads to cholesterol issues)! I also incorporated an organic grass fed whey protein powder into a green smoothie each day which you can buy here which helped me gain weight. Below is the weight gain programme I followed that Breakspear gave me along with the above advice which has helped me gain two stone in two years so I’m now back to a healthy BMI 🙂

 

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Throughout my time at Breakspear I have had soooo many different tests as you can imagine and may have seen in my previous blog posts… One of the tests I had was a food sensitivity panel which found reactions to lots of different types of foods so I then went on to do another test called a histamine panel to see if I have a problem with histamine because I was literally reacting to every single food I ate! The histamine results showed that I have high ‘Diamine Oxidase’ levels which means I have histamine intolerance. Histamine is present in lots of different types of foods which could partially explain why I was reacting to so many different kinds of foods so I was given this table below which explains what foods are high in histamine and what foods are low in histamine so my nutritionist, Ron and I could then adjust my diet further, (it’s known as the histamine diet).

 

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Before doing the histamine panel, I was already following the paleo diet as you know which is a pretty strict regime so my nutritionist didn’t want to restrict what I was eating much more than I already was. There were two things I was advised to cut out though due to their high histamine content, fish and vinegars. Fish is typically a key part of the paleo diet due to the many health benefits it has, however it’s high in histamine and fish also contains heavy metals which I have a problem with due to the heavy metal toxicity in my body so I have cut fish out of my diet altogether. Saying that, as I’m writing this post I’m down at Breakspear for 6 weeks having treatment and I’m about to go and get some gluten free fish and chips from the fish and chip shop in Hemel Hempstead (the town where Breakspear is) for myself and the other patients because it’s important to have treats every now and again! I think I’ve only eaten fish twice in the last year, so I’m quite excited I must admit! Anyway back to what I was saying, vinegars such as balsamic and apple cider vinegar are also high in histamine so I was also advised to cut vinegars out of my diet (I wasn’t eating malt vinegar anyway because it’s made from barley which contains gluten) which now makes sense because every time I had apple cider vinegar I had awful headaches but I had no idea why! At least I now know it’s because of the histamine intolerance! ***I’m writing this a day later… had horrific reaction to fish and chips last night. NEVER AGAIN. Note to self – stick to diet no matter what!

Due to the reactions I was getting every time I ate gluten (stomach bloating, cramps, nausea and vomiting) when I first came to Breakspear back in 2016 my nutritionist Ron, ordered a gluten sensitivity test to see if I have celiac disease, which is an autoimmune condition where the body produces an allergic response to gluten, it’s not the same as a food sensitivity or a sensitivity to gluten. This originally came back negative but what I didn’t know then that I do know now is that if you are’t eating any gluten when you take the test and you are celiac then a positive celiac result won’t show and it comes back negative. Later down the line this was investigated further because red blood cells were found in the stool test I had to do to check for parasites which thankfully I didn’t have!! I then did another stool test which confirmed red blood cells and then another after cutting out red meat from my diet for a week to check that it wasn’t from the meat. These tests showed I was bleeding from somewhere in my gut now the urgent question was where from and why???? I was referred by Breakspear to Dr Sean Preston who is a a consultant physician and gastroenterologist at the London Digestive Health Clinic on Harley Street. My family has a history of inflammatory bowel disease (IBD) in particular with ulcerative colitis and chrons disease which are both chronic conditions that involve inflammation of the gut so this is what the specialist expected to find as the cause of the bleeding. However, when he performed a colonoscopy on me he found no IBD but in fact that the lining of my gut was stripped but he had no idea why! A few months later I was tested for strep infection at Breakspear which came back positive for Strep Type B (that’s the one that infects the organs) and this can cause bleeding of the gut so finally we had some explanation for what was going on! It was no longer a mystery!

The gastroenterologist, Dr Preston, also ran a few different tests for celiac disease which came back positive and something I find really interesting about this that I want to share with you guys is that since I’ve been having treatment for my many and complex chronic illnesses, my reactions to gluten have been much less severe. This is interesting because Lyme Disease can cause multiple autoimmune conditions, including celiac disease, rheumatoid arthritis and multiple sclerosis and I never had a problem with gluten until I caught Lyme so we believe that my celiac disease is an acquired autoimmune disease because it’s improving as I’m being treated for Lyme. This provokes the question, how many people with autoimmune diseases actually have Lyme as the cause? There are multiple research studies that have happened and are ongoing looking into this and the results so far are fascinating! I’ll talk more about this and how Lyme can cause a wide variety of chronic illnesses some other time. It’s safe to say that avoiding gluten and other inflammatory foods such as dairy and sugar is key to helping gain some relief from inflammatory and autoimmune conditions if you suffer from any of the above.

You are probably wondering how Lyme Disease can cause all of these problems including food sensitivities and food allergies, so I will try my best to explain it briefly… When food reactions happen, there is an interaction between the allergens, antibodies, and mast cells, which are part of our immune system. Our immune systems are out of sync and they no longer work properly so when these things all interact with each other it causes the release of histamines and inflammatory cytokines which in turn causes symptoms. Each reaction to an allergen is individual and can cause multiple different symptoms and many people don’t even realise they are having reactions because the symptoms cross over with all the other parts of their complex chronic illness. Something that Breakspear diagnosed me with because of the amount and severity of the reactions to food I was having is mast cell activation syndrome (MCAS) which is also known as mast cell activation disorder (MCAD). This was diagnosed purely based on my symptoms because of the amount and severity of reactions I have to food, chemicals, supplements, medications, literally EVERYTHING. It’s an immunological condition where mast cells inappropriately release chemicals which results in a range of chronic symptoms. I have only developed this problem since I had Lyme so this is a secondary acquired immunological condition. The key advice I have if you have any kind of chronic illness is that a good starting point for healing is an anti-inflammatory diet and to avoid the most common food allergens, such as, wheat, dairy and sugar so this fits in perfectly with the paleo diet!

Here are some of my favourite paleo cookbooks for you to try out if you want to give the paleo diet a go, which I’m hoping you will after reading this blog post!

https://www.amazon.co.uk/Paleo-Diet-Food-Your-Designed/dp/0857832271/ref=sr_1_5?s=books&ie=UTF8&qid=1515607417&sr=1-

https://www.amazon.co.uk/Paleo-Monday-Friday-diet-weekend/dp/0857833227/ref=asap_bc?ie=UTF8

https://www.amazon.co.uk/Paleo-Over-Tasty-Recipes-Energise/dp/1784880701/ref=sr_1_3?s=books&ie=UTF8&qid=1515607489&sr=1-3&keywords=paleo+diet+alex

https://www.amazon.co.uk/Nourish-Healing-Cookbook-Rachael-Bryant/dp/1624144691/ref=sr_1_1?ie=UTF8&qid=1515783686&sr=8-1&keywords=nourish+the+paleo+healing

 

I would like to show you guys what my nutritionist Ron always puts together for me when my treatment plan needs adjusting, based on my symptoms, new test results and treatment suggestion by my doctor. This is all of the treatment I take each day whether I’m at Breakspear, at home, or on the rare occasion I’m well enough to be on holiday! Getting better is literally a full time job, I’m down at Breakspear for weeks on end and I’m here now as I’m writing this, sometimes the treatment is even tougher than having Lyme itself but it will hopefully all be worth it in the long run!

 

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I would also like to announce that I will be undertaking a nutritional therapy course starting in October 2017, under the College of Naturopathic Medicine (CNM) so once I have completed the course, I will have my accreditation as a nutritional therapist / nutritionist and be qualified to set up my own affordable clinics across the country, then across Europe and eventually the world, to treat people with Lyme and other complex chronic illnesses! I can’t believe I have actually enrolled and this is what I will be spending my future doing because it’s such a different path to the fashion world I used to work in and I never thought I would be well enough to do anything like this again. Hopefully it’s a path that can make a change and help someone somewhere out there so they don’t have to suffer anymore and go through what I went through and still continue to go through each and every day. You can find out more by keeping up with my journey on social media so don’t forget to follow me on on Instagram (@myblondevoyage), Twitter (@myblondevoyage) and my Facebook Blog page (Blonde Voyage). Also if you have any questions please leave them in the comments section below and I’ll do my best to answer them 🙂 Thanks guys! Hopefully it won’t be too long before I write another post x

Recent Relapse / Glandular Fever



 

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:

  1. Anti-viral treatment for the chronic active viral infection HHV6
  2. Detox treatment for various toxins
  3. 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.

 

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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.

 

viral 1

viral 2

 

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…

 

  1. 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…

treatment plan

treatment plan 2

treatment 3

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:

 

Scan 0

 

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…

***

jean letter 1

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puri letter

***

jean letter 2

 

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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The Big Stint

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!

 

Presentation provided by Diamond Headache Clinic

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

TREATMENT

JANUARY 2016: It was just over a year ago when I FINALLY found out what is ‘wrong’ with me after 10 long gruelling years of searching for answers and living amongst the unknown. Thanks to Breakspear Medical Hospital I’ve now eventually been given reasonable and justifiable explanations for the deterioration in my health over the last decade so that at last I could understand the wide range of my weird, debilitating and not so wonderful symptoms. Since then I have been receiving treatment for many of my ailments, which mostly revolve around my most prominent diagnosis – Chronic Lyme Disease. I’ve seen a huge improvement in my health over the last year which some would say is close to a miracle considering the state I was in the day I arrived at Breakspear so I would like to share some of the treatments that helped me get to where I am today with the hope that someone out there may benefit from this shared information…

 

Here are my previous blog posts I’ve written so far about Breakspear:

 

FEBRUARY 2016: Once my test results were all in, I had a follow-up consultation with my delightful doctor at Breakspear, Dr Monro, to discuss all of my investigative results as well as treatment options based on these results. You have to have a follow up consultation once all  of your test results are back to discuss the results before you can have any treatment. Breakspear is a three hour drive from my house which results in me becoming much sicker due to the travelling so I had the consultation on the phone; you can’t have the initial consultation over the phone but you can have the follow-up and any other future consultations by phone. I do prefer to have the consultation face to face though because I feel you can get a better understanding of what the doctor is trying to say face to face compared to over the phone so now I’m a bit better than I was I try and go for the consultations at Breakspear and incorporate treatment whilst I’m there if I can. ANYWAY here is the letter Dr Monro wrote to my GP after my follow-up consultation about my test results and recommended treatment: You don’t have to have letters sent to your GP after each consultation but I wanted to because after 10 years of being messed around by them I knew this letter was going to be a massive F*** Y** to all of the doctors who told me there is nothing wrong with me over the years simply because their basic tests couldn’t find anything. I wish I could have been a fly on the wall and seen their faces when they read this letter and found out all the things that are actually going wrong in my body!

 

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If you have read my previous blog posts then you will already know that I was prescribed the broad spectrum anti-viral drug Acyclovir on the day of my initial consultation, prior to getting any of my test results back because Dr Monro diagnosed me with active glandular fever/epstein-barr-virus (EBV) just by looking at me (my face and glands/lymph nodes were swollen and abnormal in size  – I had developed lymphadenopathy)! I took 400mg of oral acyclovir every day for two weeks then one morning when I woke, I rang my mum crying (this was our method of communication because I was still bedridden and unable to leave my bedroom). She asked, ‘What is it?’ She was used to me crying every day for some reason or another but this time I was crying happy tears not sad tears as I mumbled, ‘I don’t think I’m dying anymore. I’m not dying anymore. I can feel it.’ People ask me how I knew? And all I can say is when you know you know. It’s as simple as that. This overwhelming out of body feeling of this being ‘the end’ had disappeared over night.  A few weeks later and continuous improvement meant that I was able to stand for a few seconds and walk a few steps within my bed room! This drug was a miracle sent from the heavens above surely?! I really believe that drug saved my life!

So the question is, how is it possible that I have had active EBV for all these years? Well it all goes back to Lyme disease – Lyme disease is caused by the bacterium Borrelia burgdorferi. This bacteria has the ability to suppress your immune system, which is exactly what happened to me. A suppressed immune system means that the body is unable to fight off infections like a healthy person does so when healthy people get EBV their immune systems usually fights it off and the virus becomes dormant and no longer active in the body. HOWEVER, if your immune system is weakened and you catch EBV then your body can’t fight it off so it remains active in your system causing all sorts of debilitating symptoms such as:

  • fatigue / extreme tiredness
  • fever
  • lack of appetite
  • sore throat
  • swollen glands in the neck
  • weakness and sore muscles
  • headache

In other cases of immune suppression, a person could have already had EBV, fought it off when they were healthy and then when they get Lyme disease it becomes reactivated due to the immune compromised state. Many people with Lyme disease have active viruses due to immune suppression. Due to the wondrous effects acyclovir originally had on me, I believe it was EBV that caused me to be become bedridden – Dr Monro believes that virus’ and my suppressed immune system are my main issues when it comes to Lyme because of the severity of my EBV symptoms – they are one of my worst group of symptoms. Acyclovir will not cure EBV but it can lesson the symptoms of infection by slowing the growth and spread of the virus around my body.  It’s a year down the line and I still take acyclovir each day but it doesn’t have the magnificent effects it once had, I think I may be becoming tolerant to it or resistant to it because my viral symptoms are worsening by the day. However, if I accidentally forget to take it for a day my viral symptoms flare up times a hundred so I know it is still doing something right in my body! I hope one day that my immune system will be strong enough to fight off EBV so it becomes dormant in my body and in turn will no longer cause my chronic EBV symptoms .

Once all of my test results were in, I began to gradually introduce a few different supplements:

  • Vitamin B2 also known as riboflavin, 1 x 50mg capsule per day by the brand BioCare because my Organic Acids Test showed a B2 deficiency which can cause weakness, throat swelling/soreness, a swollen tongue, cracks and sores at the corner of the mouth, fatigue, eye fatigue, digestive problems, sensitivity to light and dermatitits. All B vitamins help the body convert food (carbohydrates) into fuel (glucose), which is used to produce energy. B2 is one of 8 essential B vitamins and is used for maintaining healthy blood cells, facilitating a healthy metabolism which in turn helps to boost energy levels and helps protect cells from from cell damage by free radicals as its an important antioxidant. After a year on B2 I no longer take it because my nutritionist believes I am no longer deficient due to a reduction in my symptoms.
  • Coenzyme Q10/COQ10 1 x 500mg capsule once per day by the brand Pure because my Organic Acids Test showed high methylsuccinic acid which indicates a problem with fatty acid metabolism. CoQ10 is used to assist this mechanism because cells use it to generate energy. It is an antioxidant that occurs naturally in the body so it can also help protect the brain and nervous system from degradation, however synthesis of CoQ10 is inhibited by environmental toxins and chronic disease so I am still taking CoQ10.
  • Butyric Acid Complex 1 capsule per day by the brand BioCare. This was because my Comprehensive Stool Analysis with Parasitology X 3 showed low butyrate percentage on short chain fatty acids evaluation and low total short chain fatty acids on short chain fatty acids evaluation. Butyric acid is a fatty acid formed in the colon by bacterial fermentation of carbohydrates (including dietary fibre) so the Butyric Acid was provided to feed the colonic flora and provide an energy source for the cells of the colon. I no longer take butyric acid because my nutritionist believes after a year my body no longer needs additional help with this supplement.

 

My Candidiasis Report found raised IgG, IgA and IgM antibodies to candida albicans and the Comprehensive Stool Analysis with Parasitology X3 found candida albicans isolated on yeast cultures and a few yeast isolated on microscopy (none-rare yeast was expected). Candida albicans is an opportunist fungus that grows as yeast and is one of the few yeast species that can cause the infection candidiasis in humans. This yeast is normally found in small amounts in the intestinal tract, colon and mouth so it’s a type of yeast that’s a normal healthy part of the microbes that live in the human body. Whilst it normally doesn’t propose a health problem; in people with chronic Lyme disease, conditions are created that allow the candida to thrive and become overgrown, which is what has happened to me. Candida infections can become overgrown and get out of control when the immune system is compromised and is no longer able to keep the bacteria ‘in check’, therefore, many people with Lyme disease have problems with candida. Here are some of the symptoms that it causes:

  • Impaired brain/cognitive function/brain fog
  • Fatigue
  • Joint pain
  • Headaches
  • Dizziness
  • Sweating and fever
  • Sinus infection
  • Skin breakouts
  • Digestive issues such as bloating, constipation, diarrhoea, gas, nausea, acid reflux, stomach cramps, indigestion
  • Fungal infections e.g. athlete’s foot or toenail fungus or thrush
  • Suffering from chronic fatigue or fibromyalgia
  • Food allergies or sensitivities
  • Severe sugar cravings

 

Part of the Comprehensive Stool Analysis with Parasitology X3 test included a yeast susceptibilities test to candida albicans – the results showed that I am highly sensitive to the anti-fungal medication nystatin so Dr Monro prescribed me this to treat the overgrowth of this yeast/candida infection. This medication comes as powder form and is by far the most disgusting thing that I have ever tasted! After a year of taking it, I still cannot bare the taste! Initially I began by taking a small pinprick of nystatin on the tongue 3 times a day until I eventually worked up to 1/4 tsp of nystatin dissolved in water 3 times per day. Due to taking this treatment for the last year, my candida symptoms have reduced somewhat but they are still extremely severe so I know that this remains a serious issue for me and I will continue to take nystatin for the foreseeable future hoping for further improvement!

 

The test that I had for Lyme disease did not just test for the Lyme disease bacteria but it also tested for ‘co-infections‘. According to the Lyme Disease Association of Australia, over 95% of people with Lyme disease are co-infected with other bacteria or parasites as well as the Lyme bacteria. This is because whatever bites the person is not just carrying the Lyme bacteria but is also carrying a whole host of other infections which are also transmitted to the human. My Lyme disease test found that as well as Lyme, I also have the co-infection known as Babesiosis – a rare, severe and sometimes fatal tick-borne disease caused by a malaria-like parasite, Babesia, this parasite infects and destroys red blood cells. It is a malaria like species and causes these symptoms:

  • Flu-like symptoms
  • High fevers
  • Chills
  • Drenching night sweats
  • Headaches
  • Body aches
  • Nausea
  • Loss of appetite
  • Fatigue
  • Chest pain
  • Hip pain
  • Shortness of breath (air hunger)
  • Vomiting
  • Depression
  • Haemolytic anemia (from the destruction of red blood cells)

 

Here is an amazing blog post by Suzy Cohen about Babesiosis, which I read back in 2015 when I first suspected I had Lyme disease. To treat the babesiosis infection, Breakspear put me on the drug Artesunate, it’s the same drug used to treat severe malaria so it is an incredibly powerful drug  and when I began taking it, I experienced a Jarisch-Herxheimer Reaction for the first time, which is informally known as a herx or herxing. I’m not really sure how to explain what a herx is but my friend Rhosyn who also has Lyme disease and is a patient at Breakspear has wrote a blog post about it which you can read here. She summarises it as, ‘It occurs when large numbers of harmful micro-organisms die off at the same time, thereby releasing their toxins all at once, faster than the body can get rid of them, and so causing severe inflammation. It doesn’t just occur in the treatment of Lyme, but in other illnesses too.’ Thanks Rhosyn! So this drug put me through a hellish experience where all of my current symptoms worsened for about a week as well as creating new bizarre symptoms, I’m not sure what it was doing to me but it was as if I was drunk for the entire week! My carers at the time were very concerned with what was happening when they were coming in each day to make my meals because it was literally as if I had been drinking loads of alcohol but obviously I hadn’t been! Anyway now I know that herxing is a good sign because it means the drugs are working and they are killing off the infections YAY!!! Back then my malaria symptoms were some of my worst symptoms and artesunate helped improve them massively 🙂 🙂 🙂 Unfortunately after a year of being on artesunate I think I may be becoming tolerant to it or resisting it because it doesn’t have the same effects it once had and my malaria symptoms have begun to worsen again but if I accidentally forget to take it for a day the symptoms triple in severity so I know that is it still doing something to the Babesiosis!

 

APRIL 2016: It had been two and a half months since my initial consultation and I was safely on all the priority programme of treatment I’ve spoken about above so the question myself and my family had for Dr Monro was simply what’s next? During the initial consultation there was much more treatment that was talked about that I was yet to begin so we booked a consultation with Dr Monro to find out about the next step in treatment. Here is the letter that Dr Monro wrote to my GP discussing the consultation:

 

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So the next step was to gradually introduce treatment for Lyme disease, using a modified version of the herbal Buhner Protocol, which consists of:

  • Eleuthero/Siberian Ginseng by the brand NOW – 1 x 500mg capsule per day – it’s a species of small, woody shrub native to Northeastern Asia and help’s boost the immune system, energy levels, relieves stress and increases cognitive function/mental clarity.
  • Cats Claw by the brand PURE – 2 x 450mg capsule 3 times per day – it’s a woody vine found in the tropical jungles of South and Central America and supports joint, immune, cardiovascular and gastrointestinal function.
  • Andrographis Extract by the brand NOW – 1 x 400mg capsule twice per day – it’s a herbaceous plant native to India and Sri Lanka that supports immune function.
  • Resveratrol by the brand Source Naturals – 2 x 200mg capsules 3 times per day – it’s a part of a group of compounds called polyphenols produced by plants in response injury when the plant is under attack by pathogens such as bacteria or fungi so it’s thought to act like a natural antioxidant, protecting the body against damage and is used to support the heart and for healthy ageing.
  • Coriolus/Turkey Tail by the brand MRL – 2 x 1500mg twice per day – it’s a common cultivated mushroom biomass found throughout the world and can help rebuild and strengthen the body after the damage done by chronic disease because it’s components can boost immune function.

*I still take each of these every day.

 

Here are some of the symptoms of Lyme Disease:

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Based on my initial test results from the Monro Fatigue Panel with Acumen labs and the Toxic Organic Chemical Profile, treatments for Cell Repair, Detoxification, Antioxidants & Mitochondria Resuscitation Support were recommended to me:

  • Buffered Ascorbic Acid (pure vitamin c) by the brand PURE – 1 capsule twice per day
  • Liver G.I. Detox by the brand PURE – 1 capsule twice per day
  • Nutrient 950E by the brand PURE – 2 capsules twice per day
  • Acetyl-L-Carnitine by the brand NOW – 1/4 tsp once per day
  • Flax/Borage Oil by the brand PURE – 1 capsule once per day
  • Magnesium Glycerinate by the brand PURE – 1 x 120mg capsule once per day
  • Reduced L-Glutathione Topical Lotion by the brand Kirkman – 1 cap rub into forearms once per day
  • Sunflower Lecithin Powder by the brand NOW – 1tbsp mixed in smoothie once per day
  • Pure Organic Cold Pressed Walnut Oil – 1 tbsp per day
  • Magnesium Epsom Salts – Dr Monro did I study with the university of Birmingham which found the optimal dosage is 400-500g in a full bath 3 times per week

* I still take each of these every day.

 

During my consultation, Dr Monro suggested that the worsening of my allergic type symptoms could be caused by Mast Cell Activation Disorder/Syndrome which is also known as Mast Cell Disease. This is an immunological condition where ‘mast cells inappropriately and excessively release chemical mediators, resulting in a range of chronic symptoms. The more research I do the more I am learning about the connection with Lyme and MCAD/MCAS – I don’t understand why it is so yet but it appears that because Lyme causes inflammation within the body, it is this inflammation that trigger’s MCAD/MCAS as a secondary condition to the Lyme – it is now being looked into as an autoimmune condition – it’s already known that Lyme can cause a whole range of autoimmune conditions so this makes sense to me because I definitely didn’t have MCAD/MCAS before I got sick with Lyme! I was given NeuroProtek (by the brand Algonot – 1 capsule twice per day) which shuts down allergic response receptors so this really helped stabilise my allergic reactions and reduce my allergy symptoms! I was given MCT Oil by the brand Nutricia which I apply directly to eczema caused by allergic reactions as and when I need to  – this is the only lotion that I have found has helped my eczema so I would definitely recommend 🙂 I was also given Tri-Salts, by the brand Bio Tech which are salts that contain calcium, sodium and potassium which I mix with water and take when I’m having allergic reactions. I find this really helps calm the immune system and the nervous system because it buffers allergic reactions and helps reduce inflammation. *I still use each of these products. I’ve also previously wrote about another form of treatment I have for my food/chemical sensitivities and allergies – Low Dose Allergy Immunotherapy which you can read about this in my previous blog post here.

 

JULY 2016: Due to my raised iron levels in my initial Haematology and Biochemistry Profile tests, Dr Monro wanted to exclude Haemochromatosis as a cause for this. Haemochromatosis is an inherited genetic condition where there is a metabolic disorder causing the body to absorb too much iron from food and deposit it in the vital organs, which can be very dangerous because too much iron can damage the liver and the heart and can cause conditions such as diabetes and arthritis. In haemochromatosis the iron levels in the body slowly build up over many years and this build up of iron, known as iron-overload can cause unpleasant symptoms, such as fatigue, weakness, joint pain and abdominal pain which are some of my worst symptoms! As you can see from the test results below, I do have haemochromatosis and I will have to have blood removed whenever my iron levels are too high. Since I found out about this, I’ve had to remove all iron out of my supplements so I now take a different form of Nutrient 950E – without copper, iron and iodine.

 

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DETOXIFICATION is a metabolic process that occurs within the human body that transforms and eliminates toxic substances from the body – it is an essential process for it the body to be able to function properly. Due to the amount of toxic poisoning in my body found in my initial test results – chemical poisoning found in the Toxic Compounds Test, toxins attached to my DNA in the DNA Adducts test and toxins blocking my mitochondria in the Translator Proteins Test, which means the mitochondria in my cells cannot make energy properly – Dr Monro thought that I may have a problem with detoxification so I had a test called DNA Detoxi Genomic Profile to find out how my genes that are involved in detoxification are working. This test also identifies the risk for chemical sensitivities, oxidative stress and the ability to handle various medications. The results below are quite complicated so I’ll try and summarise them for you – many of my genes involved in the detoxification process are ‘mutated’ or ‘faulty’ which means they do not work properly, therefore, my body cannot detoxify toxins in the same way that a healthy person can. I write more about how this effects me and the treatment options for it further down in this post.

 

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Many patients with Lyme disease have problems with genetic mutations and detoxification and now I’m on a quest to find out why this is the case! You are probably wondering why I want to know EVERYTHING possible there is to know about Lyme disease and the reason for this is because after 10 years of no doctor on the NHS being able to tell me what is wrong with me and therefore being unable to treat me, I took it upon myself to become my own doctor and figure it out myself. I’m the one who figured out I have Lyme disease so in my mind I’m the one who is now going to figure out how to ‘get better’ – obviously Breakspear are treating me but in my opinion they can only guide me because I know my own body better than anyone else. The is the same situation for most people with Lyme disease, we are all true medical detectives! So back to detoxification… when the Lyme bacteria die off they release toxins which flood the body so quite often people with Lyme disease have high toxic loads in their body just from having the bacteria existing within them. One of the top Lyme disease specialists in the world, Dr Horowitz has published a magnificent book, ‘Why Can’t I Get Better? Solving The Mystery Of Chronic Lyme Disease’ where he writes about detoxification associated with Lyme disease …

‘All of us are continuously exposed to internal and externally produced toxins, but not everyone feels their effects. Some patients, whether due to their genetics, their total load of toxins, or their inability to properly detoxify, become ill when the load of toxic substances reaches a certain level. How does it manifest clinically? Every symptom that we find in Lyme disease and co-infections can be mimicked by heavy metals, and those that suffer from these symptoms may also be experiencing chemical sensitivity and/or environmental illness. These are patients who are particularly sensitive to toxins from the environment. These patients may suffer from:

  • Fatigue
  • Fibromyalgia symptoms
  • Joint pain
  • Paraesthesia
  • Cognitive dysfunction
  • Anxiety
  • Depression
  • Loss of balance and/or incoordination
  • Varied abdominal complaints
  • Urinary symptoms
  • Auditory symptoms
  • Changes in weight
  • Neurological symptoms (head pressure)
  • Increased susceptibility to infection
  • Cardiac symptoms (palpitations, chest pain)

 

All of these symptoms can be caused by or exacerbated by environmental toxins.’

 

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DETOXIFICATION TREATMENT:

 

GLUTHATHIONE:

Dr Horowitz says, ‘Environmental toxins create large amounts of free radicals and reactive oxygen species. This results in oxidative stress, causing increased cytokine production and inflammation. It is therefore essential to have adequate amounts of antioxidants to decrease free radical damage to our various organs. Certain nutrients and antioxidants can modify detoxification reactions and promote enzymes that make glutathione. Glutathione is one of the most important antioxidant systems that we have in the body. Using oral, transdermal and IV glutathione can also be used as a treatment for neuropsychiatric symptoms to decrease the production of cytokines and reduce inflammation in the body. Glutathione may remove some other chemicals and toxins that affect mood and brain function. Detoxification problems can be responsible for fatigue and neurocognitive difficulties so glutathione can help these symptoms.’

My DNA Genomic test results found that I don’t have the gene in my liver or kidney that produces the most powerful naturally occurring antioxidant, glutathione, which is essential for detoxification so this explains why I have such problems with detoxification. Before these test results came in I had already been taking glutathione transdermally (where it’s absorbed through the skin) which I mentioned earlier on in this blog post along with my other detoxification supplements. After a consultation with Dr Monro (you can read about in the letter above) to discuss my genetic test results she suggested that I begin to take glutathione intravenously as well as transdermally. This was my first IV infusion drip that I tried at Breakspear, which was extremely exciting because until this point in time I hadn’t been ‘strong enough’ to do any IVs because my body was in such a fragile state if anything entered my body intravenously it would have a huge freakout/meltdown because it was too weak to tolerate the strength of IV infusions. I am SO happy to say that my body tolerated this drip very well! YAY!!! This was a sure sign of the progress I had made in the last six months that I had been attending Breakspear. I began with the smallest dose drip which is 100ml Glutathione 600mg + Selenium and then moved up to 100ml Glutathione 1200mg + Selenium and finally the full dose 100ml Glutathione 2400mg + Selenium, which I tolerated okay but the second time around I had the full dose I had a really bad reaction and had to stop so I’ve since then moved back down to the medium dose. I think it really depends on how ‘well’ and ‘strong’ I’m feeling when we decide on what dose I will be able to tolerate on the day. With this drip I notice an improvement of my symptoms almost immediately! My energy levels increase and I generally feel less sick so I try and have this drip each time I go to Breakspear. I really wish I could have it every day because I feel that it would improve my quality of life so so much! But Breakspear is so far away from my house 🙁 I’ve recently asked if I can begin taking glutathione orally as well as transdermally and intravenously to see if I notice any benefits. I’ve been given essential GSH by the brand Essential Nutraceuticals which I take 1tsp per day – it tastes even worse than nystatin though 🙁 I’ve seen many patients at Breakspear who have problems with detoxification benefit from glutathione drip infusions but I’ve also seen patients who have seen no benefit from it so everyone really is very different!

 

HYPERTHERMIA USING IRATHERM INFRARED SAUNA: 

 

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So how does this treatment work? To summarise: it raises the bodies core body temperature which helps kill bacteria and viruses. Heating the bodies tissues to this level causes them to vibrate which mobilises the toxins trapped in the cells. This causes the toxins to be released and sweated out through the skin. You can read more about it on Breakspear’s website here.

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When I first went to Breakspear back in January 2016 one of my priority treatments was to use the Iratherm infrared sauna to detox the chemical poisoning out of my body but the Iratherm is up a flight of stairs so even though this was a priority treatment of mine I wasn’t actually able to do the treatment! One of the few things I would say Breakspear could improve upon is by getting a lift so people who can’t walk up the stairs can still use the Iratherm sauna 🙂 However after 6 months of treatment I was able to have I managed to walk up the stairs for the first time in July 2016 and boy did that feel good. When I was first wheeled into Breakspear I couldn’t even have imagined being able to walk again let alone walk up a flight of stairs although there was a chair to rest on half way up and two people holding me either side! I still did it though!

Inside the Iratherm sauna there are three infrared lights, one on the head, one on the body and one on the feet. For my first time the lights were kept at the lowest setting because my body was still in such a fragile state even after six months of treatment that I had to take this treatment as easy as possible, despite this after my first experience on the Iratherm I actually ended up in A&E because my body could not cope with the treatment. I would say that my worst symptom aside from energy problems and muscle weakness is intra-cranial head pressure where it feels like my brain is too big for my skull, it feels swollen and bruised, it feels like someone is constantly smashing me around the head with a baseball bat, it feels like my skull is crushing my brain and all I want someone to do is smash my skull open and release the fluid or drill a whole into my skull and release the pressure. The Iratherm made my head so much worse that I ended up in A&E begging them for a morphine drip to relieve the pain. SO the second time around Breakspear turned the light down on the head to 50% but again for days after my intra-cranial head pressure was still 100 times worse. I managed to push myself to do a couple more Iratherms thinking about all the good the detoxification was supposedly doing but eventually I gave up because I could not bare my head getting any worse than it already was. After a few months break, I recently decided to give the Iratherm another go because I know detoxification is an essential part of my recovery but because my head is still unbearable I requested for the light to be turned off at the head completely and my god made did that make a difference! I also used an oxygen tank whilst I was on the Iratherm this time around which was one of the most incredible feelings of had in years! It was the first time I felt like I could breath properly in about three years. I had forgotten what it feels like to be able to breath properly and that oxygen tank allowed me some momentary relief, oh I wish more than anything that I could breath like the every day. Even though it’s still extremely taxing on my body, due to the combination of turning the head light off and using the oxygen machine, in some ways I actually came out of that Iratherm feeling better than when I went in! I’ve finally found the way to work the Iratherm so it suits me 🙂 Over time patients generally increase the intensity of the heat/light but I still keep it on the lowest level on my body and feet, which shows once again how different everyone’s bodies are when it comes to Lyme disease and how we all need different things to improve our health.

 

N ACETYL L CYSTEINE/NAC: 

NAC is a pre-cursor of glutathione which means it helps the body make it’s own glutathione. As you know my body doesn’t make it’s own glutathione effectively so Dr Monro recommended that I try NAC to help trigger the production of glutathione. There was another reason I was given this based on my DNA Genomic test results but I can’t actually remember why! I tried the lowest dose IV infusion drip of NAC, which was Acetylcystein 2g in 500ml but I had a horrific allergic reaction so I had to stop this. I was then given NAC as a supplement capsule (take 1 600mg capsule by the brand SOLGAR once per day) but I also had a bad allergic reaction to this so I had to stop this. I’ve recently added NAC to my latest Low Dose Allergy Immunotherapy vaccine so after I’ve taken this vaccine for a couple of weeks, I will try the NAC supplement again and hopefully I will now be able to tolerate it.

 

THIOCTACID/ALPHA LIPOIC ACID:

I can’t remember the specific reason Dr Monro suggested I try a thioctacid drip (brain fog!!!!) but it was based on my DNA Genomic test results. From reading about it – it’s an important antioxidant so it helps prevent oxidative stress and damage to cells. It also seems to be used to help reverse neuropathy (nerve damage) which I’m in desperate need of! I tried an IV drip infusion of 250ml 600mg/24ml but unfortunately I had a bad allergic reaction to this drip so I had to stop it. I hope to add it to the next Low Dose Allergy Immunotherapy vaccine I make so that in the future I will be able to tolerate this treatment as well.

 

GENETIC MUTATION SUPPORT SUPPLEMENTS:

Based on the results of my DNA Genomic test results, I was given Homocysteine Factors by the brand PURE to take 1 capsule per day and Indole-3-Carbinol by the brand PURE to take 1 capsule per day. Both of these supplements will help to support my genetic mutations 🙂

So by now you are probably wondering how do I incorporate all of these treatments together and know when to take what?! It is a minefield to say the least and uses up so much of my energy each day just to take all of this medication! Usually after I have a consultation with Dr Monro, I also have a consultation with one of the nutritionists at Breakspear, I see Ron whom I love and basically want to be when I grow up (yes sometimes I still feel like a child because I cannot work/live independently/do all of the things adults do). Ron tailors and tweaks all of Dr Monro’s suggestions even further to my specific test results and puts all of my treatments together in one great big plan/chart (see below). As you can probably tell by now, I am extremely sensitive to new medications/supplements/treatments so over the last year whenever I have been give new things to introduce, I have introduced one new item per week. I begin at the lowest dose and after a few days if I have no side effects I gradually work my way up to the full dose then once I’m safely on that only then do I introduce something new. I’m currently taking everything in the treatment plan below plus a few other things which I will talk about in my next blog post (yes there’s more to come)! *Eleuthero was accidentally taken off this treatment plan but I’m still taking it. The Ther-Biotics on this plan I don’t actually take – Ron recommend them to me but Dr Monro doesn’t want me to take them because I have too many active infections in my gut and she believes that my immune system isn’t strong enough to handle anymore bacteria in my body even if it is ‘good bacteria’ which is the case for probiotics.

 

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My brain hurts so much after writing all of that!!! Oh my goodness I can’t believe I actually managed to write all of that. Feeling quite proud of myself because I have severe cognitive dysfunction which means I have difficulty in thinking, concentrating, reading, writing, etc basically anything that involves using the brain! I just want to say this is my personal experience with treatment for Lyme disease so I’m not telling anybody to go and do these treatments! I’m just sharing my knowledge of what has and has not helped me with the hope that in someway this could help someone else somewhere in the world. What I have learnt from living with Lyme disease for the last year knowing that I have Lyme disease is that everyone with Lyme is completely different because it all depends where about’s in the body the bacteria infects therefore everyone needs different treatments to have some sort of recovery from Lyme disease – this often involves trying many different treatments until we find out what works best for us individually.

*If you have any questions or if there is anything I can help you with then please comment below or contact me whichever way is best for you 🙂

**I have just created a Facebook page for my blog which I will update regularly so here it is – https://www.facebook.com/myblondevoyage/ . I also post regularly about my treatment on Instagram – @myblondevoyage and Twitter @myblondevoyage. I use Snapchat @emma_louise999 for things that aren’t health related because I’m more than my illness!

 

What is actually wrong with you?

I know it’s been a while since my last blog post but I guess there’s nothing new there! Many of you know that over the last 10 months I have been receiving treatment at Breakspear Medical, a private hospital in Hertfordshire, just outside of London in the UK. Over those months my health has gradually started to improve and I’ve begun to reverse the last 10 years of decline in my health. I’ve shared much of my journey on social media, such as Facebook (Emma Franklin) Instagram and Twitter (@myblondevoyage) and Snapchat (@emma_louise999), despite this, many people still ask me, ‘What is actually wrong with you?’ This is probably due to the complexity of what’s ‘wrong’ with me so it can be quite confusing for people! I thought I would try my best to explain in this blog post using my initial test results from Breakspear so you can have a better understanding of what has actually gone ‘wrong’ in my body. The delay in this blog post is also because I’ve spent the last 10 months processing what all of this means and I haven’t been quite ready to put it into words and out there for the world to see, but now I am ready… Or at least I think I am?! Writing this blog is sort of like therapy for me. It helps me process chapters of my life, it helps me come to terms with and accept certain things but most importantly of all, it helps me close certain doors of my journey in order to continue to move forward both physically and mentally.

In my previous two blog posts, I covered details of my initial consultation and the initial tests I had done with my doctor at Breakspear, which you can read about here. I then posted about the first course of treatment I had (before my test results were back), as well as the initial tests I had done with the neurologists, which you can read about here. It usually takes about 2-3 weeks for all of the initial test results to come back, so patients usually book a follow up consultation for around the time all of the results are expected to be back (Breakspear let you know when this will be). However, when just a few of my results were back, Breakspear contacted me to say they had some results back and my doctor, Dr Monro, didn’t want me to wait two weeks for the rest of my results to return – she wanted me to book a follow up appointment to see her ASAP. I obviously expected my test results to reveal some abnormalities and irregularities, which would explain my ill health but I guess I wasn’t prepared for the actual amount of things that Breakspear found had gone so terribly ‘wrong’… I use the term ‘wrong’ because I see sickness from a biological perspective – so when our bodies are healthy they are functioning optimally but when someone is sick, something in the body isn’t working properly. I think the tests that Breakspear offer do an incredible job at finding out what’s gone ‘wrong’ because only then can you attempt to fix it!

I will now share with you the results from my initial tests at Breakspear eeeek… Most of the tests already come with explanations but I’ve also tried my best to summarise what the results mean so you can actually scroll past the test results to my explanations if you like. I’ll also share details of the laboratories the tests were performed at incase anyone is interested in having these tests done for themselves…

Vitamin D (blood) Test with The Doctors Laboratory 

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Despite not having left the house for over 9 months back in January 2016 and living in a black out room (resulting in no sunlight at all touching my skin for almost a year), curiously somehow my Vitamin D levels were NOT extremely deficient which is what Dr Monro had predicted on the day of my initial consultation. I was given a Vitamin D injection straight after my initial consultation before these results were back because of this predication so once the results were in we wondered did I need that injection after all? It turns out I did because Breakspear don’t follow the same reference range as the lab who ran this test and Breakspear actually consider my result as low, which is why the injection was a necessity. My pain levels did reduce a little for a few days after the injection! WOOOOP! Breakspear have different reference ranges for adequate Vitamin D levels than the NHS references. As we have seen in the news this Summer, the NHS have changed their guidelines recommending everyone in the UK to take Vitamin D supplement in the Winter because their Vitamin D recommendations before were much too low!

Lyme Serology Panel B (blood) Test and Viral Panel Comprehensive (blood) Test with Immunosciences Lab 

LYME MULTI-PEPTIDE IGG ELISA ESSAY 

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LYME MULTI-PEPTIDE IGM ELISA ASSAY 

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After 10 years of being sick, being diagnosed with groups of symptoms such as Chronic Fatigue Syndrome (CFS)/Myalgic Encephalomyelitis (ME) and Fibromyalgia on the NHS, I saw this trailer (below) for a Lyme disease documentary online. It changed everything I had ever thought about what was wrong with me. I watched this and I knew I had Lyme. How? Because 10 months ago, before I went to Breakspear, the people in this video were me. I felt as if I was looking in a mirror and Lyme was staring back at me. At the time I was so sick I couldn’t have contemplated sharing anything with you about Lyme, yet alone writing a blog post!

If you don’t read anything else of this blog post, please watch the trailer for this film. These few minutes will help you understand Lyme better than anything else I’ve seen so far.

My Lyme disease results were POSITIVE! Lyme disease is an infectious disease caused by the bacterium Borrelia Burgdorferi which is why it is also know as Lyme Borreliosis. You get Lyme disease when you are bitten by a tick which carries the bacteria (recently it has been discovered that you can also get it from mosquitos!). At some point in time I would have been bitten by a tick or mosquito, although I don’t ever remember seeing a tick attached to my skin. How would I have seen it if it was in a place I couldn’t see though? Also, ticks are so small they are barely visible to the human eye! 30% of people who contract Lyme from a tick get a bulls-eye rash around the site of infection so they know they’ve been bitten and have been infected with Lyme. I don’t ever remember seeing this rash but then again what if it was in a place I couldn’t see? Side Note – my mum just told me as I’m about to share this post that around the time I began to get sick I had ‘ringworm’ where a red circular rash appears around the site of infection – we are now wondering if this could have been the bullseye rash for Lyme all along?!?! There’s also the point to make that 70% of people with Lyme don’t even get a rash. So, you 100% can have Lyme disease even if you don’t remember a tick bite or a rash. If you take antibiotics as soon as you are infected with Lyme disease you can prevent it from turning into a chronic condition. I have been sick for 10 YEARS with UNTREATED Lyme so for me it’s a different story. I have LATE STAGE CHRONIC LYME DISEASE. From further investigative tests at Breakspear I have found out that the bacteria is so far spread around my body that it has infected my muscles, my heart, my gut, my joints, my urinary system, my nervous system and my brain. THIS IS THE REASON WHY I HAVE BEEN SO SICK!!!! Finally an effing answer after 10 years!!!! Unfortunately treatment is a whole other story when you have late stage chronic Lyme disease. If only it was as simple as taking a few weeks’ worth of antibiotics. It pains me deep inside knowing that a few weeks of antibiotics all of those years ago could have saved me from this living hell. My life may never have turned out this way and that is the sole reason why raising awareness is so important; so others don’t have to experience what so many of us have. Oh there’s one more key thing – there is NO CURE for CHRONIC Lyme disease! I will write more about Lyme disease and treatment options in a future post. I hope that short summary gives you a little bit of knowledge about Lyme or if you have any questions please comment below 🙂 Also – there is a Lyme disease test available on the NHS in the UK but it is only 30/40% accurate/reliable so 60-70% of people who actually have Lyme disease get a negative result from the NHS test. This is why so many people go undiagnosed on the NHS and why we have to go private to get reliably tested.

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One of the many problems with Lyme is that when you are bitten and infected with the Lyme bacteria, you are usually infected with other infections as well, which are known as ‘co-infections’. To sum it up, you are infected with whatever other nasty diseases the tick is also carrying! Whatever bit me and infected me with Lyme was also carrying Babesiosis – a rare, severe and sometimes fatal tick-borne disease caused by various types of Babesia, a microscopic parasite that infects red blood cells. It is a relative-species of malaria that caused the same symptoms as malaria and damages the body in the same way. I will write more about this, the symptoms and treatment options in a future Lyme blog post.

Another problem with the Lyme disease bacterium is that it suppresses the immune system. This is the reason I have a positive active Epstein-Barr Virus (glandular fever) test result. It’s a fact that 98% of the population have antibodies to EBV meaning they have had EBV at some point in time but most people don’t know it and don’t get symptoms because they are healthy and have strong immune systems. I either caught EBV after I got Lyme and my body has never been able to fight it off or I had it before Lyme, I fought it off, it became dormant and then when my immune system became suppressed because of Lyme disease it reactivated and has been a chronic active infection ever since! I will also talk more about this, the symptoms and the treatment in a future blog post.

Haematology, Biochemistry Profile with Electrolytes (blood) Test with The Doctors Laboratory 

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Immunology Profile (blood) Test with The Doctors Laboratory 

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These haematology and biochemistry tests are the general blood tests that Breakspear do to check if everything is working properly. They are quite similar to the general blood tests GPs on the NHS will do when you go to them complaining of various symptoms. As you can see from my results, there are many abnormal results highlighted in red, which give some indication to what has gone ‘wrong’.

My neutrophil count is too low… my neutrophil count has been too low for as long as I can remember. Around 8 years ago when I first started going to my GP with my mum about my physical symptoms, the GP took blood tests to see if they could find out what was wrong. My neutrophil count came back too low and has been that way ever since. The GP referred me to an immunologist on the NHS who conducted more extensive tests but they obviously didn’t find anything. I was told ‘there is nothing wrong with you’ for the first time out of hundreds, if not thousands, of times to come! Once my first lot of test results were in, Breakspear repeated these general blood tests and my neutrophil count was once again too low. Breakspear diagnosed me with neutropenia because my neutrophil count is consistantly too low. Neutrophils are an important type of white blood cell in your immune system. They are made in the bone marrow and travel around the body in the blood to help the body fight off infection (particularly those caused by bacteria) by sensing infections, gathering at the site of infection and destroying the pathogens. Without enough neutrophils, your body can’t fight off infections. Having neutropenia increases your risk of many types of infection as well as difficulty in fighting them off – this definitely correlates with my history, symptoms and the rest of my test results! I also recently found out the co-infection Babesiosis/Babesia can cause low white blood cell counts.

My monocyte count is too low… Breakspear also diagnosed me with monocytopenia due to these results. Monocytes are white blood cells that help to fight off infection so a low number of monocytes in the blood usually indicates an increased risk/susceptibility of infections. A low monocyte count occurs in a range of illnesses that affect the bone marrow such as rheumatoid arthritis, HIV, lupus, leukaemia and aplastic anemia. It can also be caused by bloodstream infection, certain medications such as chemotherapy or vitamin deficiencies. Lyme disease/Babesia has suppressed my immune system so severely that my body can no longer produce white blood cells properly in the bone marrow.

My creatinine level is too low… Creatinine is a chemical waste product that is produced when Creatinine Phosphate is metabolised and broken down in the muscle. Levels that are too low can be caused by a diet low in protein, in conditions that cause muscular atrophy (decreased muscle mass) or from aging.  It can also indicate severe liver, kidney and heart disease. As you know from reading my previous blog posts, when I first went to Breakspear I weighed just six and a half stone and had severe muscle atrophy in my arms, legs, and neck so I couldn’t use my arms to feed myself, use my legs to stand or walk or use my neck to lift my own head up. We originally thought that this was due to deconditioning from being bedridden for so long but after extensive tests at Breakspear we now know that one of my main sites of infection for Lyme disease is my muscles. So Lyme destroyed my muscles causing the muscular atrophy. Obviously, being bedridden didn’t help the situation though!

My LDH level is too low… Lactate Dehydrogenase is an enzyme found in nearly all living cells that helps convert sugar into energy. Levels that are too low can be caused by a genetic mutation which causes exercise intolerance, fatigue, muscle breakdown and muscle pain. All I have to say is that fatigue, muscle wastage and muscle pain are some of my worst symptoms!

My uric acid levels are too low… Uric Acid is a chemical created when the body breaks down substances called purines, which are found naturally in the body and in some foods and drinks. Levels that are too low can indicate kidney disease because it’s the kidney’s job to filter out uric acid from the blood into the urine. It can also be seen in chronic alcohol use which is interesting because over the years my uric acid levels have always been too low on the NHS tests. NHS doctors have often asked me if I drink a lot… the answer was obviously NO. It can also be caused by exposure to toxic compounds which you can read more about in my test results further down in this blog post.

My iron levels are too high… Breakspear went on to repeat these blood tests 5 times over the next few months and each test found that my iron levels were too high. My Dr suspected I had the condition haemochromatosis, so I had a test called Haemochromatosis Genetic Test to see if I have the faulty gene for this condition. The test came back positive and indeed I have haemochromatosis. This is a metabolic disorder causing the body to absorb too much iron from food and to deposit it in the vital organs, which can be very dangerous! The main symptoms are fatigue and joint paint which we know I have! I will now have to have blood drawn whenever my iron levels are too high. I’ll speak more about this, the symptoms and treatment in a future blog post.

Coxsackie Virus (blood) Test with The Doctors Laboratory 

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The Coxsackie virus is also known as hand, food and mouth disease. It’s part of the enterovirus family of viruses (including polio and hepatitis A) that live in the human digestive tract. Many people with Lyme have this virus but thankfully this test came back negative!

Intestinal Floral Immunity (blood) Test with Alletess Medical Laboratory

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This intestinal floral immunity test is looking at the good bacteria present in the gastrointestinal tract (the gut). I have low IGG antibodies to E.coli and Lactobacillus… low IGG antibody response to this normal microflora indicates a reduced or blunted immune response or underlying immunodeficiency, which we know I have because Lyme disease has suppressed my immune system. Normal microflora prevents the growth of pathological microbes and regulates many immune functions including allergic response to food. It also helps maintain the surface of the intestines and produces vitamins B and K. Therefore low microflora can indicate an inflammatory response and can contribute to leaky gut syndrome – this is where food and microbes can cross the wall of the gut into the blood stream, causing allergic reactions and food sensitivities. You may have read in my previous blog post about the severity of my food allergies and sensitivities! The IGG Comprehensive Food Panel (blood) Test you can see below tested me for allergies to many different foods – the ones in red are the ones i’m allergic to. 1* means mildy allergic and 2** means moderately allergic. I’ve been having Low Dose Allergy Immunotherapy (LDI) at Breakspear to treat my allergies, which you can read about here, in this previous blog post. The LDI also helps to stabilise my immune system and my autonomic nervous system.

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Candida (blood) Test with Alletess Medical Laboratory

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Candida Albicans is a fungus that grows as yeast and is one of the few species of Candida that causes Candidasis in humans. Everyone has candida in their gut, as it’s a type of healthy yeast that lives in your body. It becomes a problem if it grows out of control. As you can see my IGG, IGA and IGM antibodies are all abnormally high. This indicates a recurrent on-going chronic overgrowth of Candida, as well as suggesting it has crossed the mucosal barrier into my blood stream. My results indicate a serious problem with my immune system due to its inability to keep candida in check, which we already know I have due to Lyme Disease suppressing it.

Organic Acids (urine) Test by The Great Plains Laboratory

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N0 7 (high) Arabinose is a sugar produced by yeast so this indicates a yeast/fungal overgrowth in the gastrointestinal tract which we know I have – candida!

No 9 (high) Tricarballylic Acid can be caused by the intake of corn or corn-based foods contaminated with fungal mycotoxins/moulds. Tricarballylic is released from the mycotoxins when they pass through the gastrointestinal tract. They inhibit the enzyme aconite from working which therefore stops the Krebs cycle (energy making process) from working properly. The main symptoms of aconite deficiency is exercise intolerance which we know is one of my worst symptoms!

No 10 (high) Hippuric Acid may derive from GI bacterial activity, which we know is happening from candida and my microflora test results I talked about earlier on.

No 17 (high) 4-Cresol in the urine is most commonly due to C. difficile being present in the GI tract. High 4-Cresol is associated with the most severe clinical symptoms in autism, multiple sclerosis, neurotoxity and other neurogloical disorders. Prior to going to Breakspear I was being investigated by the NHS for MS due to my MS symptoms and further down you can read about the neuro toxic poisoning I have.

 

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No 21 (high) Oxalic – oxalic can be deposited in joints, muscles, kidneys, eyes, brain, blood vessels and heart which can cause the pains associated with Fibromyalgia and heart abnormalities. Oxalates are often a byproduct of Candida which causes autism. We know I have Candida, Fibromyalgia and heart problems!

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NO 46 (high) Methylsuccinic – this may be due to a fatty acid oxidation disorders. This is when the body can’t break down fat properly to produce energy. In turn this can cause lethargy which is one of my symptoms!

NO 53 (high) Vitamin B2 Riboflavin… this indicates a B2 deficiency. It also indicates a problem with fatty acid oxidation.

 

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NO 61 (high) Aspartame, salicylates or GI bacteria… in my case it is likely that this is too high due to problems with GI bacteria.

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Comprehensive Stool Analysis Test with Doctor’s Data

This stool sample test was done to test for parasites which thankfully I don’t have wooo!  However, this test really shows the damage that Lyme disease has done to my gut and my immune system. Many people with Lyme have problems with their gut and the majority of us have a suppressed immune system when the Lyme becomes chronic.

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These results show that I have yeast overgrowth, which we already know I have. Yeast overgrowth can infect virtually every organ system, leading to an extensive array of clinical manifestations. Although there are many symptoms that result from candida overgrowth, some of the most common symptoms are brain fog, fatigue, cravings for sugar or carbs and sensitivity to smells (perfumes, chemicals, environment), all of which I suffer from!

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This test found that I have red blood cells (RBC) in all 3 stool samples which shouldn’t be there. I have gone on to have a faecul occult blood stool test since then which came back positive for blood. I then did another faecul occult blood test after cutting out meat for a few days to check it wasn’t from eating meat and this came back positive. I’ve now been referred by my Dr at Breakspear to Dr Sean Preston at London Digestive Health on Harley Street in London so he can investigate to try and find out where about in my gut I’m bleeding from. I’ll post more about this at a later stage…

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This high secretory IGA level indicates an upregulated immune response in the immune barrier of my GI tract.

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Short Chain Fatty Acids (SCFAs) are too low…  When bacteria ferments dietary fibre, short chain fatty acids are the end product. They play an important role in the health of the GI tract and are essential in the gut to decrease inflammation, stimulate healing and contribute to normal cell metabolism. SCFAs also decrease the PH of the intestines and make it an unsuitable for pathogens including bacteria and yeast so if there is a problem with SCFA then bacteria and yeast can thrive in the GI which we know has happened to me!

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Toxic Compounds (urine) Test with The Great Plains Laboratory

This Toxic Compounds Test I had looks for chemical poisoning… The black markers in my results should all be below the LLOQ line, if they aren’t this indicates poisoning of that specific chemical. There are also explanations of each chemical below. Many people with Lyme have chemical poisoning and problems with detoxification. I will talk more about the reasons behind this in a future blog post.

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A few years ago I developed Multiple Chemical Sensitivity, a condition which I’ve previously written a blog post about here. From the test results above, I can now understand why I have so many issues with chemicals. The toxic load of chemical poisoning in my body is so high that when I encounter every day chemicals such as perfume, cigarette smoke, cleaning products or car exhaust fumes it makes me so sick because my body simply can’t handle any more chemicals in the body! Many people with Lyme have Multiple Chemical Sensitivity because we have serious problems with detoxification. I will write about the significance of this to our health in a future blog post.

Monro Fatigue Panel (blood) Test & Lymphocyte Sensitivity (blood) Test with Acumen

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This test result indicates a problem with fatty acid oxidation which I’ve spoke about earlier on in this blog post. Fatty acid oxidation issues seem to have come up a few times in my test results but i’m still not really sure what it means/the clinical significance of them??

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Above is the chemical sensitivity test that I had which shows some of the chemicals I’m abnormally sensitive to. The substances with a result over 100 are the ones I have problems with. I already knew that petrol exhaust makes me more sick because every time I walk down a road with lots of traffic or when I’m in cities, in a car, at a petrol station and especially in a car with the windows down stuck in traffic, I react really badly meaning many of my symptoms get much worse so I feel much more sick. I also already knew that I’m allergic to nickel because whenever I wear glasses or earrings that contain nickel they literally burn off layers of my skin! Nitrosamines is a chemical in cigarette smoke, which I know makes me so much worse because when I used to smoke it made me soooooo much more sick and even just walking down the street makes me more sick because of all the people smoking around me.

Due to this build up of chemical poisoning in my body, some of the chemicals have attached themselves to my DNA. Toxins attached to the DNA are carcinogenic and can lead to genetic mutations which cause cancer so this is an extremely important test result! I have 3 different toxins attached to my DNA which you can see along with explanations below.

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To summarise:

Nitrosopyrrolidine is a Nitrosamine which comes from burnt organic matter, burnt food, rubber and, most commonly, cigarette smoke. I smoked for many years before I became too sick to smoke so this is likely where it came from! (I know it’s bad that I only stopped smoking because I became too sick!)

Benzo(a)pyrene is a PAH from grilled/burnt food which I have always eaten a lot of because I love eating well-cooked and burnt food!

Chromium is found in stainless steel so this could come from using stainless steel pans!

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I also have four toxic chemicals blocking my mitochondria (the parts of the cell which make energy) so that they can’t make energy properly. Chromium and nitrosopyrrolidine are two of the four toxins that are attached to my DNA. Another is a large lipid complex and the fourth is Dioxin.

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These test results below show how effectively the energy making cycle is working. It has found that 31% of my mitochondria are blocked with toxic chemicals which means 31% of them can’t make energy properly! No wonder I have such problems with energy!

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This test below found that I have DNA floating freely in my blood plasma. It shouldn’t be there. It should be inside cells. So somewhere in my body, cells have degraded releasing DNA. Oh dear!!!!!!

4b4c

Mycotoxin Panel (urine) Test with Real Time Laboratories

mycotoxin

This Total Mycotoxin Panel (urine sample) test I had tests for mycotoxins, which are also know as moulds. I live in an extremely old barn conversion in the countryside which is hundreds of years old and I feel much more sick when I’m at home compared to when I’m in other places so my doctor suspected mould to be growing in our house. Many people with Lyme have mould issues but thankfully this test result came back negative which I’m very happy about because mould is so difficult to treat! I’m now on a quest to discover the reason that I feel much more sick when I’m at home compared to other places… our house is surrounded by fields covered in pesticides/insecticides etc which are some of the chemical poisoning I already have in my body so could it be that this is continuously making me sick? Could it be because my house is absolutely FREEZING and i’ve recently had tests with the neurologists which explain why i’m so much more sick in the cold (will explain at a later date)?  My dad sent me an email recently saying that some people get sick from oil heated houses so could it be that I’m sensitive to our oil heating? The current answer is – WHO KNOWS!?! Hopefully I’ll be able to answer this question one day 🙂

So we’ve come to the end of my initial test results (finally! I know, thank goodness!). The main reason I was so scared of sharing these results because they are so personal to me and my journey (LOL it makes me laugh when people say my journey! like I’m on some sort of spiritual healing path). They are the first time since I began to get sick 10 years ago that any test has been able to give some sort of explanation of what is ‘wrong’ with me. They explain why I have these symptoms and finally answer the question I have spent half my life wondering – what on earth has happened to me? Where did it all go so wrong?! The significance of these test results show how closely they correlate with my complex medical history and provide explanation of the wide variety and severity of my symptoms. They are a reason, they are justice, they are evidence and most importantly they are proof of everything I’ve ever felt over the last ten years. Only now I can begin the road to recovery because only now do I know what is ‘faulty’ and what needs ‘fixing’. I have never been able to understand how some people expect me and others to get better if we don’t even know what’s wrong?!?! It’s like trying to fix the well oiled machine when you don’t know which part isn’t working! It makes NO sense to me but that’s probably my logical way of thinking not allowing me. My friends and now doctors at Breakspear have said to me that I’m extremely ‘methodical’ with my way of thinking but to be honest being methodical was my only way of figuring out what went wrong which was the only way to know how I could get better. I’ve already begun to write my next blog post which is all about treatment! I will share in detail the things that have helped me take my first steps on this treacherous road to recovery. This is not the end, this is just the beginning of a possible life long road which will lead me to a future full of laughter, love and life.

*** I just want to say that I’m not a doctor or a scientist so my interpretation of these test results if based on my prior research and knowledge as well as everything I’ve learnt from the doctors, neurologists, nurses and fellow patients at Breakspear Medical along the way. If anyone has any questions please let me know and I will try and get back to you guys as soon as possible!

I hope that in some way shape or form, this has helped someone in some way. Bye for now, Emma x

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