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!!!!!!

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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.

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