It's taken me a long time to write this; almost eight months have passed since I found out I have chronic Lyme Disease and it's taken me a while to get my head around it and I'm still working on that. I wasn't shocked initially when I found out, I was happy to finally have pathological results stating the facts of what's going on inside my sick body. I wasn't really prepared for how this would make me feel though, I feel daunted by the task I now find myself facing.
I know that this information gives me a better chance at recovering and with the right treatment I can beat this. Sadly there isn't much help currently available on the NHS, and there won't be for a good few years. The current guidelines are being reviewed and the new ones won't be out until 2018, which is too late for me. If left untreated Lyme is a progressive illness so I haven't got time to sit around waiting any longer than I already have for the NHS to sort themselves out. Sadly this means self funding my treatment. I've been learning as I go, finding out as much as I can, as much as my foggy brain will contain, so that I can be my own advocate.
For those of you asking, and for anyone else who's interested in finding out about Lyme disease I thought I would write a personal post about how I got to where I am today. My story starts in September 2009 with severe sinusitis and flu-like symptoms. It was a few days into my course at the University of Arts London, London College of Fashion. It was my dream to study there, so I pushed through the illness and committed to the three hours of travelling every day to East London from Surrey despite feeling so awful. I visited my doctor twice, the first time he sent me away, the second visit a few weeks later I was prescribed antibiotics. I thought this would make me better and my symptoms did improve while taking them but as soon as I stopped the antibiotics I started to feel ill and exhausted again. In the few weeks of better health I had a Flu jab to protect me from catching flu on my commute, but soon after new symptoms started creeped in, headaches like I'd never experienced, my whole body ached and then severe leg pain started. It was so awful that a few times I found myself fighting back tears on the Underground. This is when I started to think something was seriously wrong.
By December I was starting to fall behind at college and over the Christmas holidays I started sleeping in a coma-like state up to 22 hours a day. I started experiencing excruciating nerve pain in my arms, constant migrane headaches and cognitive problems. I attempted to go back to my course but I could only manage a few hours a day, some days only an hour before I knew I needed to get myself back to Surrey, back to bed, back to darkness. Everything seemed too loud and too bright. Even the sound of the heating quietly ticking away at home was too loud.
In February I was called in to see the head of my course to discuss my situation. I needed to take my course work with me, but I didn't have the strength to carry my portfolio or my books, so my mum had to go with me to carry my work. We all agreed I needed to take time off, I was told that I would be more than welcome back in September.
I saw the doctor again, she tried to say I was depressed, I wasn't, I was sick. Thankfully my mum spoke up for me and demanded they helped me, this is when the blood tests started. One of these blood tests was a Lyme test, an ELISA test which is used as a Lyme screening test. That was the first time I heard of Lyme. It sounded serious, a horrible disease, so I was happy to hear it was negative. Only last year did I start to understand the reasons why an ELISA test can be negative and unreliable. Firstly it's not the most sensitive test, secondly it was a while after my symptoms had started and I might not have been making enough antibodies for a positive test because Lyme suppresses the immune system. Furthermore, this year I requested my medical records from my GP surgery and cannot find any evidence of this ELISA test actually being carried out!
After many more tests I was finally diagnosed with ME/Chronic Fatigue Syndrome in June 2010. I attended a lifestyle management course, had B12 injections, and pain killers that did more harm than good, but sadly that's all the NHS could offer me. The rest was up to me and fate.
I improved a little in 2013, enough to have hope of returning to studying by using herbal protocols aimed at strengthening my immune system, so in May 2013 I looked at Bournemouth and Falmouth universities with the hope of applying later on that year. I was determined to finish my course that I was forced to leave in 2010 by this illness. I had my heart set on the beautiful seaside town of Falmouth. I was still very ill at the time but I was functioning a lot better than in previous years so being fully better didn't seem too far off in the future if I continued improving at the same rate. Then in July after a shopping trip with my best friend I felt awful and my symptoms hit me like a ton of bricks. It was then I noticed a rash on my left leg, it looked very odd, like a bullseye but it didn't hurt so I didn't seek any medical help, I thought it was just a spider bite, my mum and I laughed at how odd it looked. As it faded I forgot all about it until last year.
My symptoms have gradually got worse over the last three years. My energy less and less. Any activity that might have made me temporarily worse in the past seems to take a more permanent effect. I picture it and describe it, for those who can't understand too well, as walking down a stairs into darkness, the next step down becomes my normal before another relapse forces me down again. Each step down means I can do less and less. This has been a massive mental challenge, whereas before I was getting better and ever hopeful, this slow deterioration has left me at times feeling very low mentally.
I've always been proactive in my recovery, from finding out very early on about pacing to trying out acupuncture, medication and herbal medicine. So post shopping and post bite I went back to my herbalist and tried to make progress again that way but with no luck. My herbalist and I both felt puzzled as to why I suddenly stopped responding. A few months later I stopped the herbal tinctures altogether.
I found myself asking my GP for help and she arranged CBT with the Chronic Fatigue Service clinic but there was a very long waiting list.I channelled my focus on getting diagnosed with POTS (Postural Orthostatic Tachycardia Syndrome), a condition I've had since early 2010, with extreme sudden onset. I had no idea what it was, why I couldn't stand up for more than ten minutes or why I fell to the floor daily in a heap with my heart racing, vision and hearing gone, feeling extremely dizzy and nauseous.
It took a year for me to find out about POTS and it was 2011 before I could put a name to these episodes. My occupational therapist who ran the lifestyle management course for CFS/ME suggested I see a cardiologist. She could see all the classic symptoms of POTS in me but sadly my doctor refused, and it took four years of asking before I switched doctor and was finally taken seriously. By this point I was constantly feeling nauseous and spending increasingly more time lying down to help ease it. In August 2015 I was finally diagnosed by a cardiologist and given medication which has helped. I truly believe I would be permanently bed bound now if it wasn't for that medication.
After finally getting diagnosed with POTS I started to wonder about my other symptoms. My brother sparked the question for me after hearing a radio programme about Lyme Disease and it wouldn't go away - could I have Lyme Disease?
In February 2015 my brother told me about a girl on the radio who talked about being misdiagnosed with ME who actually had Lyme Disease. Her symptoms where the same as mine, the way she became ill sounded a lot like what happened to me. This is when I first started to question my diagnosis of ME. The questions lingered and a few months later I found myself reading Spoonie Sophia's blog about getting diagnosed with Lyme and how to go about it. Sophia's story helped me to make my mind up, having been ill for six years I felt I needed to rule out Lyme disease and put my mind at ease.
The more I learnt, the more I felt I needed to be tested. I scored extremely high on the Horowtiz questionnaire - a questionnaire that's been designed by one of the world's leading Lyme doctors.( I really recommend filling this out if you suspect Lyme might be involved in your illness.) It was only then that the odd comical bite came back into my mind, could it be the classic Lyme EM rash? I needed answers. I couldn't live my life in hope of getting better while constantly getting worse and by this point I started to experience facial numbness which is now an almost permanent feature.
I couldn't sit around waiting or contemplating this any longer so I approached my GP asking if she would support a positive result. She requested I had a Western Blot test for Lyme disease on the NHS and said she would do what she could to help. My Western Blot came back negative, as I expected. Again, with Western Blots they often come back negative due to insufficient antibodies being made by a suppressed immune system. You can also have positive bands on a negative Western Blot that indicate the presence of Lyme but this is often missed by the NHS.
So in January this year I took the first step as my own advocate by contacting AONM who are Arminlabs UK contact. The process of ordering my test was simple. I filled out some questionnaires and they told me which tests were most likely needed based on how my symptoms scored. They sent me a blood test kit and after agreeing the tests, paying and arranging my postage with FedEx, I made an appointment to have my blood taken at my local surgery. This I had done for free as my GP said it was okay, however the management of the surgery weren't too happy, nevertheless I left with a box of my blood which FedEx picked up from my home.
A few weeks later I found out that I was positive for Lyme disease, that my immune system was severely suppressed and, on top of that, my body was fighting co-infections - other tick born bacteria and chronic viral infections. No wonder I'm feeling so sick.I don't think I will ever know how long I've had Lyme disease. I have a few theories, the first being that I have had Lyme since 2009 or maybe longer, but the herbs in 2013 helped my immune system gain some strength to start fighting it causing the rash to emerge. According to Amercian specialists, Jemsek, it is indeed possible for a rash to appear later on. Secondly, that I was bitten again, or, thirdly, that I was bitten for the first time in 2013 and also have ME and did have for the years I've been ill before that - but the last doesn't explain my why the symptoms would be the same up until this year.
I took my results to my NHS doctor, she didn't know what to make of them and sent copies to a local microbiologist and it took six months to hear back from him. He wasn't helpful - he suggested having a Western Blot repeated on the NHS. I knew that the NHS was a long shot so this wasn't surprising, I've heard of many people having their private results dismissed. The problem is that it could take twenty Western Blots before I get a positive, and even then the treatment on offer from the NHS is so limited I would need to seek out help else wear.
Pretty much the only option for chronic Lyme treatment within the UK is at a private clinic, the Breakspear Medical Clinic in Hemel Hempstead. I am now under Dr Monro, a well known doctor in environmental medicine.
Dr Monro wouldn't accept my current results on their own so she ordered more Lyme tests from two different labs which both came back with positive results. Interestingly my Western Blot from Igenex in America was negative but with positive bands, and that, along with three other positives and clinical presentation was enough for my diagnosis.
I now have a treatment plan including IV, injections and oral antibiotics as well as supplements and liver support. Breakspear also want to address my chronic viral infections, POTS and other autonomic dysfunctions. The doctors treat the body as a whole rather than just the Lyme infection. This approach makes more sense to me and I believe treating everything that is wrong with my body will give me a better chance at beating the Lyme and becoming healthy again.
I'm yet to decide how much of it my body can cope with and what I can afford, it's not cheap paying for private health care but without this chance my future is pretty grim. There isn't really an option, I have to get treatment. I'm well aware of how my illness could progress and the damage it could lead to. I hope to respond well to whichever treatment option I go for and the prospect of feeling and doing better in the next few years is one that will keep me going. I'll keep you updated on my journey to health.
I also want to cover more Lyme related questions that I have been asked about a lot on social media. If there's anything you would like to know just comment or email me and I will add it to the list for future posts.
Emma Xx
Useful links
questionnaire I recommend by Dr Horowitz
Why Can't I Get Better? Book by Dr Horowitz
Arminlabs
Breakspear Medical
Spoonies Sophia - The ups and downs o testing for Lyme Disease
For more Lyme information on Lyme Disease I recommend checking out: International Lyme and associated diseases society (ILADS)
