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!
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
- lack of appetite
- sore throat
- swollen glands in the neck
- weakness and sore muscles
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
- Joint pain
- 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
- Drenching night sweats
- Body aches
- Loss of appetite
- Chest pain
- Hip pain
- Shortness of breath (air hunger)
- 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:
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:
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.
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.
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:
- Fibromyalgia symptoms
- Joint pain
- Cognitive dysfunction
- 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.’
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:
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.
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.
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!