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!!!!!!

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Mycotoxin Panel (urine) Test with Real Time Laboratories

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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

PS. Don’t forgot to subscribe to my blog  to receive a notification when I publish a new post by entering your email in the subscription box which you will find on the ‘About Me’ page on mobile or the ‘Home’ page on desktop…

Breakspear Part 2

Hey everyone, I’m back again with another post about Breakspear Medical Hospital! You can read my previous blog post here to find out about the process of applying to Breakspear and my first day there, which included an initial consultation, numerous tests and far too many needles! I first started going to Breakspear back in January 2016; at the time I couldn’t travel the 3 hour car journey from my home in Staffordshire to the hospital in Hertfordshire then go straight into hospital so we stayed in Hemel Hempstead the night before my first day there (and the night after) … it’s a good job because they wanted me to start treatment with them the very next day!

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The treatment I began the day after my initial consultation is called Low Dose Allergy Immunotherapy (LDI). This is a technique where vaccines are used to treat food and chemical/inhalant allergies. The reason I began this treatment immediately is because I had already become intolerant to gluten, grains, dairy, refined sugar and many of the chemical additives, preservatives and colourings found in processed foods. I already lived on a very strict diet consisting of meat, fish, veg, fruit, nuts and seeds meaning no grains (this obviously includes gluten), no dairy, no legumes, no refined sugar, no processed foods and no foods with chemicals, preservatives or additives. I had already developed intolerances to many of the foods I was still eating without even realising! What usually happens once food allergies begin is that as time goes by more and more allergies develop (this was the case for me) until eventually people end up not being able to eat anything because they are allergic to literally EVERYTHING! I actually have a few friends who have reached this point and survive solely on nutrition shakes or cucumber and potatoes. This is the direction I was heading in so Breakspear needed to put a stop to this and halt the progression ASAP!

On arrival for my first day of LDI testing, the day after my initial consultation, we were given a list of over 500 different foods and other common allergens that Breakspear offer vaccines for. The most important foods to begin using this technique with are the ones that you most commonly eat; this is to ensure you don’t develop any new food allergies on top of the ones you already have and to make sure that you can continue to tolerate the foods you still eat. Here is the list of substances you can be vaccinated against…

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As well as choosing individual substances to test for and add to your vaccines, you can choose a combination of substances to test for in one go. The mixed vaccine substances give a coverage for combinations of foods but they aren’t as specific as testing each substance individually so this is only appropriate for patients who are less sensitive to these specific substances. Here are the mixed substances you can choose from…

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If LDI is a treatment that has been recommended to you by your doctor then during the initial consultation they will have discussed with you which substances they think you should test for but you are also given this list of common foods and chemicals for some guidance. The nurses conducting the testing are extremely knowledgeable, very experienced in this field and also there to help guide you with your choices.

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The treatment begins with a fine injection in the arm just under the skin ,containing the first substance you are testing, which in my case was a food. Once this substance has been injected, the body will react to it, producing a bump or wheel around the site of injection. After a few minutes the wheel will either remain active or disappear. After ten minutes if the wheel is still active the nurse will then weaken the concentration of the substance and inject you with the new weaker dose. Ten minutes later the wheel will be evaluated again for it’s reaction and depending on the size of the wheel, the dose of the substance concentration may be lowered again. This process continues until NO REACTION IS PRODUCED – the dosage where no reaction is produced is known as the ‘end point’. You can fit 25 substances in one vaccine so the same process is repeated with each substance you are testing. Once the ‘end point’ has been found for all of the substances you are testing, the pharmacy at Breakspear then put all of the correct concentrations together to build the vaccine. The second step of this technique is the actual treatment – you take the vaccine home with you and take it at least once every day… don’t worry though you don’t have to inject it! You can push the syringe and let the fluid be absorbed underneath your tongue instead. By now you are probably wondering how on earth this is going to help treat allergies and sensitivities?!?!? I will try my utmost best to explain it for you (apologies in advance if I don’t do so well – brain fog has taken over) …

The substances in your vaccines are known as ANTIGENS – a protein, which is usually foreign to the body, that stimulates an immune response, resulting in the production of an antibody. Each day when the patient takes the vaccine the antigen enters the body and it stimulates the production of an ANTIBODY – a protein manufactured by the white blood cells to neutralise antigens. When an ALLERGEN – substances that cause the body to react next enters the body, the body already has antibodies ready to neutralise it so it is already prepared to deal with it before the substance provokes any symptoms/an allergic response. To sum it up, the vaccine contains a tiny amount of certain foods that are enough to stimulate an immune response (antibody production) but not too much to cause the patient to provoke an immune response/allergic reaction. Then once the actual substance whether it’s a food or chemical enters your body, the immune system is already prepared with antibodies to neutralise the food allergens before an allergic reaction/symptoms are produced because taking the vaccines each day maintains the levels of antibodies in the body. How mad is that?!?! I hope it makes sense and you are having a eureka moment like I am!

Now let’s talk costs: a full day of allergy testing is 6 hours and costs £230… it is split into 3 hour blocks… testing from 9-12 pm, lunch from 12-1pm and testing from 1-4pm. Half a day of allergy testing is 3 hours and costs £115 and there is an overrun charge of £60 which applies to up to 60 minutes, after which time a half day charge will be applied. I managed two hours of testing on my first day doing LDI and considering the physical state my body was in, this itself was a HUGE achievement! Those two hours of LDI had ensured that my body had been pushed about a thousand times beyond it’s limits because each time you are injected with a substance, it is provoking an immune response from your body so every ten minutes you are having an allergic reaction, which comes with a hefty load of symptoms and imagine the amount of energy that is demanding from the body every ten minutes! A week later I returned to Breakspear to finish making my first vaccine, which included testing the foods I most commonly eat; this gave me a broad coverage of foods and the best chance of preventing new allergies to the foods I could still eat. As well as creating a vaccine for foods, I also created a second vaccine containing histamine and acyclovir. It was important for me to have a vaccine with histamine in it because my allergic reactions to foods, chemicals etc were so severe that I needed this histamine vaccine to take a few times a day or whenever I needed to help neutralise an allergic reaction. If you are wondering what acyclovir is, it is the anti-viral drug my doctor, Dr Monro prescribed me on the day of my initial consultation to treat chronic active viral infections she suspected I had (you can read more about this in my last blood post here). When I first started going to Breakspear, my body couldn’t tolerate any medication AT ALL – I would have extreme reactions to all medication including nausea, stomach cramps, vomiting, hallucinations, dizziness, fainting and black outs – even taking just one paracetamol would black me out for an hour! My body was in far too much of a ‘crisis’ state to tolerate anything entering the body which was a concern for Dr Monro because how was I going to be able to take any medication to help me get better?!?!? The answer to this was LDI! By adding acyclovir to the vaccine which I could take every day for a couple of weeks helping build up my tolerance to it and prepare my body for when when I started taking the actual acyclovir medication. It takes 2-3 weeks for the vaccines to work properly so after two weeks of taking the vaccine containing acyclovir, I started taking the acyclovir medication and I had no reactions to it!!! This method of treating food and chemical allergies was actually working!!! I really could not believe it!

Here is a list of the substances in my first two vaccines…

 

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The technique Low Does Immunotherapy originated in the United States and is used by doctors all over the world but Breakspear is the only place in the UK who offer Low Dose Allergy Immunotherapy, which you can read more about here. This is different to the low dose immunotherapy used in America for treating infections such as Lyme disease, candida etc… it is purely an allergy treatment for food and chemical sensitivities. Here is some extra info for those interested in this method of treatment…

  • You can’t take any anti-histamines for 3 days before testing as it may interfere with results and you’re not allowed to take pain killers during testing incase it masks symptoms (this was one of the most difficult parts of LDI for me because I needed opiate pain relief to simply be awake in my own bed let alone out of the house doing something that was physically demanding on the body).
  • You can’t eat or drink anything apart from water during testing as it may interfere with results. You can bring your own lunch to eat during the break or you can order food from the kitchen at an additional cost(everything cooked to order and all diets catered for).
  • You need to wear sleeveless tops when testing because the injections are on the upper arm.
  • There is a ward in the hospital for drips/infusions, a ward for allergy testing and 5 private rooms off the side of the ward, which I was in during LDI because I was far too sick to be on the ward with all the light/noise/movement etc.. most people do the testing on the ward but you may request a room when making the appointment if you feel you need one. This can’t be guaranteed though as the staff decide who gets them based on patients clinical needs.
  • The length of time it takes to build a vaccine massively varies between individuals because it depends on how much you react to a substances and therefore how long it takes to test each substance – it can take anything from a few days to a couple of weeks to build a new vaccine.
  • The number of days you need to book in for testing will have been recommended to you by your doctor during the initial consultation but if you don’t require all of your booked sessions you can cancel at reception.
  • Once you have the vaccines ready to take home with you, they must be kept frozen apart from when you’re defrosting them to use them (obviously duhh).
  • You can’t eat or drink for 30 minutes after taking the vaccines so I take them after breakfast but sometimes I take them 2-3 times a day if I feel that I need to and I take the histamine vaccine more frequently than the food vaccine because that is used for all types of allergic reactions.
  • The other costs involved in LDI are the actual vaccines which cost £3.95 per substance which works out at £98.75. The actual testing is much more expensive than the vaccines. There is also the price of the needles which you buy per box but i’m not sure of this cost sorry!
  • The vaccines last 3- 4 months then they need re-testing.
  • and finally if you are scared of needles then this is the treatment that will cure your fear!!!

neuroscience-treatment

 

Dr Monro wanted me to have one last set of tests at Breakspear before I returned home to recover from my first few weeks at the hospital… During my initial consultation with Dr Monro, she identified certain physical signs which indicated I have severe dysautonomia (I spoke about these in my previous blog post, which you can read here). Dysautonomia is an umbrella term used to describes several different medical conditions that cause a malfunction of the autonomic nervous system (ANS). The autonomic nervous system is the part of the nervous system responsible for the control/regulations of our organs and bodily functions that we don’t consciously direct, such as breathing, the heartbeat and digestive processes. Breakspear is the only place in the whole of Europe who offer tests of the autonomic nervous system, which explains why people come from all over Europe and the world to be patients there! They offer two sets of tests of the autonomic nervous system: the Baseline Autonomic Index test which is basic testing of the autonomic nervous system and the Quantitative Inotropic Fatiguability & Transcutaneous Gas (QIFT) test, which is a more in-depth version of autonomic nervous system testing. During the initial consultation with doctors, if the doctor suspects possible autonomic dysfunction in a patient then they will recommended the baseline autonomic index test and then if the results do show some autonomic dysfunction, the patients will later go on to have the more extensive QIFT test. However, because my doctor found signs of severe autonomic dysfunction during my initial consultation she recommended I go straight in with the QIFT test.

These tests are not conducted in the same area of the building as the main wards and the doctors consultation rooms… they are unfortunately undertaken in the neurosciences department which is down some stairs… uh oh… you can probably sense the dread in my voice upon hearing the word STAIRS. Stairs and people who can’t walk more than 2-3 metres even on flat ground do not mix well… OBVIOUSLY I couldn’t go up and down the stairs (we counted recently & there are 6 stairs) so I was wheeled out of the building, around the back and entered the neurosciences department that way instead. I run into some trouble with the stairs again at a later date so the one thing I wish Breakspear had but doesn’t was a lift!!! The main specialist neurologist, Dr Julu, was working away in Sweden at the time of my appointment (most of the doctors at Breakspear work abroad in other hospitals as well, which you can read more about here) I saw Dr Shah who is a part-time clinical neurophysiologist at Breakspear and runs the test and performs the analysis of the test results before discussing in detail(what actually happened at every heartbeat). He asked me lots of questions about my autonomic symptoms, which would indicate to him what’s going on with my autonomic nervous system and then we moved through into another room where there were lots of machines and wires waiting for me to wired up (its not as scary as it sounds)!

I don’t remember anything that happened whilst I was in that room because I was so sick at the time that I was in a semi-state of consciousness but I’ve spoke to Dr Shah since about my experience with the QIFT for the purpose of this blog post. Before the tests could begin, Dr Shah had to clean areas of the body he wanted to attach electrodes to (he usually uses alcohol to do this but because of my chemical sensitivities I couldn’t tolerate this so he used water instead) then electrodes were attached to 2 areas of my chest, another on my stomach and another over my liver to measure the oxygen and carbon dioxide levels deep in the tissues. A blood pressure reader was attached to my finger, which had to be at the same level as my heart so my arm was put into a long sling to raise my finger as close to my heart as possible (he said he didn’t usually give patients the option of having a long sling but he knew I wouldn’t have the strength to keep my arm up near my heart in a shorter sling). Next he placed a band around my stomach to measure my breathing rate which he kept loose due to the excruciating pain my ribs were in when they weren’t even being touched. The slightest soft touch on my ribs felt as if I was being stabbed! Finally, warming blankets were placed on me because I have bad circulation which can make the readings inaccurate so the warmth helps with circulation. The tests last about an hour and a half in total (I think) although it was all a blur and my memory is poor so I could be totally wrong! Knowing how sick I was, before we began the tests Dr Shah said to me, “Just do what you can and when you need to finish we will but the more you can do the more information we have so the more we can find out what has happened to you. I understand you won’t be able to do some of the tests though and this is okay.” There was no doubt about it that I was going to push to the absolute max to give them as much information as I could! I’d waited almost 10 years for someone to do tests that would actually find out what is wrong with me! I wasn’t going to give up now as I was SO close to the answers I’d been searching for!

The tests began with me lying lying down in a semi-upright position (about a 30 degree angle) for a few minutes (usually patients did this for 15 minutes but my heart couldn’t take more than a couple). He then lay me flat in a supine position which is definitely my favourite way to be! My body is much calmer when lying flat! After a few minutes lying down and recovering from the previous tilted position he lifted me up and I gave it my best attempt to sit up which was more of a slumped over state with him holding me up but back in January 2015 I couldn’t sit up without support at all. I lasted 1 of the 3 minutes expected which was impressive to say the least! I recovered from that before moving onto the next tests which were deep breathing exercises, which I couldn’t do very well because of the excruciating pain it caused me to expand my lungs (I had naturally begun to breathe into my throat instead of my lungs so my upper body didn’t move when I breathed). Next was a carotid massage sinus massage which involved applying pressure to the areas of the neck where arteries are located and then came the toughest part of the tests… usually patients sat on a low stool with no back support for 5 minutes but I couldn’t sit on a low stool so he lifted me from the bed onto a chair and held my back up for a couple of minutes. The next task was to stand up for 5 minutes so he lifted me up, holding my body weight up but I passed out within a few seconds but it was okay because Dr Shah was there to catch me! Dr Shah has recently told me that I passed out a fair few times during the tests and he was aware it was about to happen just by the reading on the screen but typically I don’t remember much! I then had to sit down again and exert pressure onto a squeezy thing (poor description I know I’m sorry my brain is tooooo foggy!), which didn’t go very well due to the muscle wastage in my arms & hands & my lack of strength. The last thing I had to do was blow into a tube for as long and as hard as I could… so it’s safe to say I didn’t manage all of these tests successfully but I tried by best and that is what counts!

This was the most physically demanding tests I have ever done but at the same time they were the most fascinating set of tests I have ever done! Heart rate, blood pressure, breathing rate, oxygen levels, carbon dioxide levels and abnormal brain activity were just a few things being measured and you could see absolutely EVERYTHING that was going wrong in my body on the screen (well I couldn’t but my parents could!). Whilst I had been doing the various tasks the lines and the graphs on the screen were going utterly bananas! Dr Shah nor my parents could believe what they were seeing. FINALLY after all these years I had REAL PHYSICAL PROOF I was sick. YOU COULD SEE ON A SCREEN I WAS ILL. You have no idea how long I had waited for this and what it is like to be sick for 10 FREAKING YEARS and for NO-ONE, NOT ONE SINGLE PERSON be able to find ANYTHING wrong with you on ONE SINGLE TEST!!!! All I wanted to do was cry with happiness but I was too sick for that. My body did’t produce enough energy for me to cry. YEP THAT’S NOT A JOKE. This was most definitely a HALLELUJAHHHH moment and little did we know that this was just the beginning! All I had to do now was return home, recover and recuperate from this crazily intense few weeks at Breakspear and sit tight (well lie down in my case) patiently waiting for all of my results!

*You can read more about the neurosciences department at Breakspear here.

**You can subscribe to my blog by entering your email on the home page and it will let you know when i’ve published a new post 🙂

 

Breakspear Part 1

Hey everyone! I’m back with another chapter of my story and this time it’s about Breakspear Medical Hospital! You can read my previous post here to find out what happened to me prior to going to Breakspear and why I decided to go there. Instead of my usual descriptive, story-telling posts I’m going to be doing a series of more informative posts for people who are considering going to Breakspear and want to know more about it. Also for friends and family who are interested in what I’ve been doing for the last few months 🙂

First off, Breakspear is in a town called Hemel Hempstead in Hertfordshire, England. It is a PRIVATE hospital, not an NHS hospital. For those of you who aren’t in the UK, the NHS is our National Health Service; it is the publicly funded healthcare system for the UK. A few years ago you could get a referral from your GP and apply for special funding on the NHS to be a patient at Breakspear but this option is no longer available as the NHS have cut the funding (surprise, surprise). To get an appointment at Breakspear you simply have to call, make an appointment directly and pay privately (costs cannot be covered by private health insurance though). An initial consultation with a doctor costs £220 and typically takes up to 90 minutes. This is the amount of time you will be booked in for but you can use less of it if you don’t need it all (I think the price is a set rate though so less time doesn’t mean a cheaper appointment). You have to have an initial consultation before you can have any tests or treatment. There are 5 doctors and you can choose to book an appointment with a specific one or go with the nearest available appointment, which can be anything from a few days to a few weeks waiting (check this?). Many people go to Breakspear based on  word of mouth recommendations so they might choose a specific doctor based on those recommendations. I heard of Breakspear through a friend who told me a family friend of hers went there after ending up with an ME/CFS diagnosis on the NHS – Breakspear managed to find the causes of her symptoms, treat them and now she is back at the gym and working full time! This person saw Dr Jean Monro so I went with her as well, who I probably would have chosen anyway as she is the medical director and founder of Breakspear Medical Group and she has the most experience out of all the doctors considering she began her private practice back in 1982! Click here for information about the different doctors which may aid your decision.

*You can also read more about the different chronic and environmental illnesses Breakspear treat here.

When you have booked your initial consultation, you are sent various questionnaires regarding symptoms and medical history. Back in January 2016 (date on the form is a year out as I must have had brain fog at the time of completion), I was unable to grip a pen, let alone write due to muscle wastage/weakness and lack of energy, I also couldn’t read or absorb any information so my mum had to fill out most of mine for me. If it’s too difficult for you to fill out then you can enlist someone to help you and remember to pace and break the paperwork up into sections so you don’t over do it!

This is the medical questionnaire all new patients have to fill in:

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This is the symptom scoring chart all new patients have to fill in (you also fill this symptom chart out every 6 weeks so your progress can be measured):

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When we booked the appointment we told Breakspear that I already had ME/CFS and Fibromyalgia diagnosis’ on the NHS so I had to fill in these pain and fatigue forms as well:

 

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We also told Breakspear that I wanted to be tested for Lyme disease so I had to fill out this Lyme disease questionnaire and symptom checklist:

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Some of the other paperwork you have to fill in are: a supplement and medication form detailing what you are currently taking, a consent form, a patient record card indicating whether you want information to be sent to your GP or not (I chose the option for information to be sent to my GP). The final form you have to fill in is a payment form were you include the payee’s information along with card details from a Visa, MasterCard or Debit card. This is where the consultation and any future tests or treatment will be charged to.

Many people have asked me how I was able to go to Breakspear considering how sick I was… if you haven’t read my previous blog posts, here is the severity my health was at and my level of functional ability back in January 2016: It’s taken from AYME’s ME/CFS Functionality Ability Scale you can see here.

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Months prior to booking the appointment at Breakspear we enquired how they would manage with someone ‘as sick as me’ and we were told, “We are sorry but you are too sick for us to help you and you are too sick for us to facilitate your needs.” Oh if I had a pound for every time I have been told this over the years… I would have millions! A few months later and it was a completely different story; by January 2016 I was ‘too sick’ to NOT go to Breakspear. I no longer had a choice. You can read the reasons why in my pervious blog post here. Many people say they are ‘too sick’ to go to Breakspear due to the consequences it will have on them and their ill health. I completely understand this but for me the risk and the consequences of staying bedridden for any longer were much higher than the risk and consequences of me going to Breakspear. I had no idea what would happen to me if I went but I knew what was most likely to happen if I didn’t go. If I had stayed in that bed for a few more months then I probably wouldn’t be here now. Going to Breakspear was my only option. It’s as simple as that.

My family pushed for me to be moved to Breakspear by stretcher and to travel down in a private ambulance as it seemed the only feasible option to get me there but from previous experience travelling to hospitals via stretcher and ambulance, I knew that this would make me much more sick than having my family move me themselves. Extreme hyper-sensitivity to noise meant that the noise of the heavy ambulance doors slamming, the noise of the machines, the noise of the vehicle, the noise from the traffic and the outside world, the noise of the paramedics talking, my body would not be able to handle. Imagine standing next to the loudest speaker you can ever imagine whilst someone is screaming in your ear, that is how a whisper or a tweet of a bird outside my window sounded to me. My body didn’t register noise as a sound, it registered it as pain, the most excruciating pain you can imagine. Extreme sensitivities to chemicals, scents, perfume, aftershave, laundry detergent, make-up and leftover smoke the paramedics usually wore tightened my chest, leaving me, nausea, faint and difficulty with breathing. There was absolutely no way no way that I would be able to endure THREE HOURS of this for the length of the journey it would take to get to Breakspear. It was decided that instead, my step-dad, good old Roger, would carefully lift me from my bed, carry me downstairs and gently placed me into a ready-made bed in the front seat of the car. Good job I’m only small! (By the time we left for my appointment I was severely underweight, and weighed just six and a half stone.) I remember those few seconds I spent outside as clear as a blue sky, my eyes were closed but I could feel the wind on my face as it’s the first time I had been outside in about 9 months. I never could have imagined something so simple could have felt so good and little did I know that soon enough I would be sampling that wonderful feeling on a regular basis.

That first journey to Breakspear was with my mum who has had to give up work to be my full time carer as I needed 24 hour care. She’s become accustomed to my needs and was able to facilitate me exactly as I needed to minimise the impact the journey would have on my ill-health. Here are some tips for spoonie travelling: we pushed the front seat of the car as far back as possible so I was in a lying down position because if I was placed upright I would immediately pass out. We padded the seat out with duvets underneath me to reduce the pain that the impact of a moving car caused me. We filled out the leg space with pillows to raise my legs as having my legs bent was far too demanding on my body and also caused me to faint. There was no talking allowed; obviously no radio or music noise at all, as well as using earplugs and headphones to reduce the noise from the car and the outside world. An eye mask was needed to block out all light and ensure I had no visual stimulation (what I saw when I opened my eyes, the moving traffic, colours etc) because having my eyes open alone would have emptied my energy pot for the entire day. I remember a friend wishing me good luck for the journey and suggesting I look at the outside to distract myself from the pain I was in. My response to her was, “I can’t open my eyes. It makes me much more sick.” How is it possible that I had got to a point where I was too sick to even open my eyes?

Breakspear is a day clinic so depending on how far you have to travel and how well/sick you are, you may travel on the same day or stay at nearby hotels the night’s before and after the appointment. There are two Premier Inns and two Travelodges in Hemel Hempstead so patients usually stay in one of those. Most of the patients who travel from abroad stay for a period of a few months to have the initial consultation, testing and treatment so they rent apartments nearby. Breakspear also have a self-catering guest house which is well suited for those with chemical and electrical sensitivities, you can read more about it here. This would have been perfect for my needs but unfortunately the only toilet is up a flight of stairs which I clearly wasn’t able to manage when I first went to Breakspear so we stayed in a nearby hotel the night before and after my appointment. There is no way I could have had the appointment and travelled on the same day! In the past, my mum and I used to always share a room when we were travelling away from home but when you need 24 hours a day complete rest just to survive to the next day, no light, no noise, no talking, no communication and no movement within the room meant separate rooms were a necessity for my mother and I. An accessible room allowed me to be wheeled straight to the bed, lifted out and then wheeled to the toilet when I needed. I had a commode at home but that wasn’t the type of thing you wanted to take around in public with you!!! At this point my fluid intake was limited as I only had the energy to be moved from the bed to the toilet a couple of times a day. Yes I’m baring all in this post aren’t I! To sum this up, I highly recommend an accessible room to those who may benefit from it 🙂

*A couple of important things to be aware of before you go to Breakspear is that anyone entering the building isn’t allowed to wear anything scented or perfumed – you have to be completely SCENT FREE which includes washing clothes in scent free washing powder, wearing scent free deodorant, wearing scent free make up or no make-up at all because there are many chemically sensitive patients attending the clinic who react to just a small amount of a wide variety of smells. You can read more about becoming scent-free here. There are also no mobile phones or other electrical devices allowed inside Breakspear. Many of the patients have electrical sensitivity meaning that they react to electrical devices and it makes them much more sick. It is important to respect these rules because if they weren’t in place, lots of the patients who are electrically and chemically sensitive wouldn’t be able to attend Breakspear for testing and treatment.*

On the morning of my initial consultation when we arrived at Breakspear (my dad travelled down to meet us for the appointment), my parents lifted me out of the car into the wheelchair, which was padded with blankets and pillows so I could be as close to a lying down position as possible. I was wheeled a few metres from the car park to the entrance of the building and through the double doors, which my wheelchair fits through quite nicely! I have actually heard people complain that they have difficulty fitting their wheelchair through the door because usually only one of the double doors is open so if your wheelchair doesn’t fit through then all you have to do is ask at the reception desk and they will unlock it for you! As soon as the staff saw the state I was in they took me straight to be lifted into a bed on the ward. I was unable to lift my head, move my arms, move my legs, open my eyes, talk or communicate. They don’t usually offer beds out as most people go to the waiting area until their doctor is ready to see them. If you do need to go in a bed however, there are a few on the ward as well as private side rooms so if there are any free then they will allow you use them. Remember to ask and advocate for what you need! After a few minutes I was moved into a consultation room (again most people sit in a chair but if you can’t and this isn’t obvious (they aren’t mind readers!) then ask to lie down in the bed). The blinds were closed and the lights were turned out because despite the fact I was wearing sunglasses, after 5 months of not leaving my bedroom, having the blinds constantly closed, the lights off and living in almost pitch black, the mild light shining through the doctors window whilst I had sunglasses on and my eyes closed still felt as if I was staring, directly into the blinding sun. Extreme hyper-sensivity to light may even be an UNDERSTATEMENT.

During the consultation, due to my limitations, lack of strength and energy, at most I could whisper a few words. My impaired cognitive function left me unable to listen to people talk and absorb information so my parents did most of the talking and communicating for me. The majority of the consultation is spent going over the paperwork and discussing an in-depth detail of history and symptoms so the doctor can begin to build a picture of ‘what has gone wrong’. For me this went something like this… when Dr Monro asked my if I had ever experienced whiplash, I did have to reveal a car accident I’d been in at the age of 18 and had hidden from my parents for all these years! At the time I had been under strict orders from my mum not to leave the house because I was extremely sick (how ironic) but as she left the house for a few hours I decided to sneak out to my boyfriends, only to crash, sustain injuries to my neck, back and knees and then be too scared to tell anyone about it! My parents got a nice SURPRISEEEE during our consultation! The doctor also conducts a brief physical examination… as Dr Monro walked over to me she stated, “You are over breathing. You take too many breaths per minute and your breathing is erratic. I suspect this is alveolar hyperventilation, which will be causing respiratory alkalosis, a decreased pressure of CO2 in your arteries and an imbalance of acid in the blood which will be putting too much strain on your liver.” She then felt my pulse and said, “Your heartbeat is erratic and fluctuating too much.” She took one look at my face and explained, “You have lymphadenopathy. Your lymph glands under your chin and along your jawline are swollen. You will have chronic active viral infections.” We could never understand why I had a ballooned out, swollen face and about five chins (grose I know) when I was severely underweight?! She then went onto test my neuroglical sensations. She asked, “Can you feel this?” I responded, “Feel what?” I looked down and she was holding a vibrating piece of metal on my legs, my feet and my knees and I couldn’t feel a thing. I took my sunglasses off so she could shine light into my eyes where she found, “Your pupils don’t react to light. They are constantly widely dilated.” This along with me being unable to hear noise vibrations near my ears meant that I have developed severe dysautonomia. The autonomic (automatic) part of my nervous system is seriously malfunctioning. I was actually in shock. How had she been able to find all these things wrong with me in a matter of minutes when the NHS couldn’t find one thing in 10 years?!!?!? This is the initial plan that was created for me after the consultation:

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Once the consultation is over most patients go back to the waiting area where there are drinks you can help yourself to whilst you wait for test recommendations but I was moved into a private room on the side of the ward. Remember if you aren’t automatically moved to a bed and you want/need a bed then just ask if there are any free. Advocate for yourself and your needs! Dr Monro compiled a list of test recommendations based on my history, symptoms and physical examination, then a member of staff from the patient liaison team came to discuss the tests and costs with my parents. They even offered to talk outside of my room due to how the noise and movement within the room effects me (have you ever heard of medical staff so understanding, aware and accommodating??!?!) Usually the tests are put into two priorities – priority one and priority two. This obviously depends on how many tests are recommended to you because if it’s just a few they won’t be put into priorities. The amount of tests recommended to you really varies person to person, it can range from 1 or 2 to 10-15 like I had. You can see my test recommendations below (I will explain what the tests mean when I share my results). Some of the blood tests are done in Breakspear’s laboratory but most of the tests are sent to different laboratories around the world!

Priority One

  • Monro Fatigue Panel (blood test)
  • Haemotology & Biochemistry Profile with Electrolytes (blood test)
  • Immunology Profile (blood test)
  • Vitamin D (blood test)
  • UOA + GPL + TOX (urine sample)
  • Immunoserology of Lyme Panel B (blood test)
  • Viral Panel Comprehensive (blood test)
  • Coxsackie Abs (blood test)
  • QIFT Test (tests with the neurologist)

Priority Two

  • Lymphocyte Sensitivity Test (blood test)
  • IgG Comprehensive Food Panel (blood test)
  • Intestinal Flora Immunity + Candida (blood test)
  • Comprehensive Stool Analysis with Parasites X 3 (stool sample)
  • Total Mycotoxin Panel (urine sample)

I am extremely grateful to be in the fortunate position where we were able to say to Breakspear, ‘do whatever it takes’. Other people aren’t so fortunate so when choosing tests, many patients only choose priority one to begin with because of the costs, then if they are able to do priority two tests further down the line they do so whilst other patients choose the tests that they feel will be most beneficial to them. Remember you are the one who is ultimately in control of the decision making, Breakspear are there purely to guide you. Most patients have the blood drawn for the tests after their consultation so they don’t have to return to the hospital at a later date. This is what I did and I had 25 vials of blood taken in one go!!! Back in January my peripheral neuropathy (damage to the nerve cells that lie outside the brain which you can read more about here) meant that the slightest touch of a finger upon my skin or the brush of a piece of clothing left me flinching, screaming and crying in agony. My body registered touch as pain, the sharpest pain you can imagine, it was as if I was being stabbed. Two nurses either side of me did their best to keep me conscious. My body’s usual automatic response to any intrusion such as an injection or blood being taken by a needle was to black me out because it was in such a crisis mode it didn’t know how else to cope! The nurses then injected me with Vitamin D, in my bum! Going to Breakspear was the first time I had left the house in 9 months so they predicted my Vitamin D level would be be close to non-existant …  it felt strange because prior to being sick I found injections incredibly painful but it actually felt nice to have pain that was only temporary? Dr Monro passed by briefly before we left… she prescribed me Acyclovir, a broad spectrum anti-viral drug she wanted me to begin straight away as she highly suspected I have chronic active viral infections suppressing my immune system. At first we questioned whether we should wait for the comprehensive viral panel test results before I started treatment? What if I didn’t have any active viruses? Would this treatment then be harmful? We also wondered whether we should have waited for my vitamin D test result before having the injection? Oh well too late for that now! We were all in, there was no doubt about it. I remember lying there, unable to talk, unable to be awake, praying that this would be the answers I had so desperately longer for. There was absolutely no guarantee that any of this would help me and knowing that my life was in their hands was terrifying to say the least but it really was my last and my only chance of survival.

After our consultation Dr Monro wrote this letter to my doctor at my local GP surgery:

1617

18

19

Can you believe it? All that in one day! They wanted me to return for more tests and to begin treatment the very next day! And so the journey had begun, the journey I had longed for so many years before; the journey that would reveal the answers that I had been searching for, and the journey that would save the life that I had already mourned for.

  • I would like to say that my experience at Breakspear is not the same as that of other patients, everyone’s journey is unique and I am simply sharing my individual experience and opinion. Please feel free to ask any questions and I will try my best to answer them. The one thing I’m not willing to discuss is how much we have spent at Breakspear so far. I will discuss the costs of specific tests or treatment I’ve had but not overall costs so please respect this and bare it in mind. If there is anything in particular you would like me to write about in future posts then let me know!

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