I however have been forced to swallow the acceptance pill on another level with a health diagnosis in recent weeks. Some people are aware of my story particularly my health story. For those of you that don’t I will try to briefly summarise.
In 2016 after I was hospitalized for 6 weeks, my left knee swelled and filled with fluid for no apparent reason. The day after my initial admittance I was transferred to Tullamore general hospital for an emergency knee surgery. The doctors believed I had a bone infection particularly due to my high fevers, body aches and overall unwell feeling. This surgery didn’t find any infection despite the initial sample taken from my knee prior to surgery having a positive result. My symptoms worsened and left me unable to do anything. After 6 weeks and a lot of testing I was diagnosed with “Adult Onset Stills Disease”. I was under the care of my well respected consultant Rheumatologist. Stills disease is an auto inflammatory condition with similar traits to that of Rheumatoid arthritis. Rheumatoid arthritis is a condition where your body’s own immune system attacks healthy tissue, particularly in joints. Stills disease along with attacking the joints also can attack healthy organs and body tissues. With stills disease also comes a salmon coloured rash which can present on the skin at any time accompanied with a spiking fever. For me my attacks initially would take over my body leaving me unable to move with severe pain. I noticed a pattern over time and learned that my fevers would spike systematically at 7am, 11am, 2pm, 7pm, 11pm, 2am. These I controlled somewhat with IV Paracetamol yet after diagnosis I began a serious course of steroids orally. I was discharged at the time as my dad was terminally ill. I remained on steroids for 6 months with lowering dosages yet as they lowered I could still feel the symptoms rising again inside me. I was not improving after the first month so I was then put onto a weekly chemo agent drug which is terrifying as I suffered awfully with nausea, diarrhoea and vomiting. A few months later whilst still battling to come off the steroids I was introduced to a second weekly injected immunosuppressive drug.
Fast forward 6 months and I was still feeling so unwell. I didn’t own my body as I felt it refused to do anything I wished or longed to do. By this time I had spent a lot of tearful lonely days pining for my old life and wellness. To many I seemed my usual self yet inside I was broken. I followed my gut “literally” and after a lot of research and study decided I would address helping myself. I took control of my diet and got leading expert advice to back up all of my findings. I also found help, support and yet more importantly friendship in understanding through a local herbalist (I won’t name but if anyone would like contact details I cannot recommend her knowledge and treatments enough). I truly trusted that I could make myself well through my food and new treatment. I had ups and downs ....ok a lot of downs yet my mind-set always drove me forwards. I was never sure of my direction yet I kept moving.
Feb 2018 I had surgery to remove cervical polyps, after this surgery I started investigating further pain below my right ribs which seemed to come and go. I had ultrasounds, 2 colonoscopy, 2 endoscopy procedures and was told everything was fine. Doctors suspected problems with my gallbladder yet everything was clear and nothing explained the pain I would experience. During these exams however I was diagnosed with a hiatus hernia and diverticulosis in my intestine. Thankfully of which both never caused me problems yet they exist.
March 2019 whilst on holidays I fractured my ankle, this however on a weird level felt like something normal for a change and it would heal. Little did I know the pain it would cause and the time frame of 6 months being recommended that I should not go for walks and definitely not run or bike. Along with my food I also am very strong willed and determined when it comes to my exercise. My exercise always made my bad days better. Now I didn’t have that and I have been stopped in my tracks as such.
April 2019 after thorough investigations over the past years I was referred to a surgeon in Tullamore hospital for the first of 2 carpal tunnel release surgeries. The second was 2 months later. Secretly these ailments had bothered me for so many years giving me weakness in my hands that I struggled to simply close buttons. The other major symptom for me was constant tingling and numbness in my hands. The symptoms were not just in my hands and because I was so self-conscious of what people would think I never told doctors I was suffering badly with my right elbow and shoulder. The pains in my right shoulder would come and go yet my elbow was constant. I eventually told my surgeon of the elbow and shoulder pain and after further investigations he booked me in for a double elbow surgery. The surgery entailed a tennis elbow and a golfer’s elbow release.
During this time I was also referred to a consultant in the Hermitage private hospital in Dublin to see a consultant neurologist. My referral here was to see could I get some relief from severe migraine attacks. I had my first migraine attach when I was about 8yrs old and it just became something I just lived with as a normal everyday thing. In 2019 my attacks became more prominent and lingered 4-5 days when my norm would have been 2-3 days. These headaches became hangover like each morning and sometimes would pass come lunchtime. I was prescribed anti-seizure drugs and yet everything in me told me this also wasn’t the answer. I returned to the Hermitage 3 months later and admitted my fear of taking the drugs. With my consultant we agreed to try another approach of steroid injections which would be administered into my head, just behind the ear. I could have these injections every 2-3 months depending on how successfully the injection would work. The first time was scary yet I would have done anything to relieve my symptoms of brain fog, pain, forgetfulness, shoulder and neck pain. I have had steroid injections in most parts of my body yet this one was without question the most discomforting with a feeling of pressure in the head. The relief I experienced that first day was incredible yet now I know it was actually the local anesthetic that gave me the greatest feeling of ‘feeling normal’, I hadn’t felt this since childhood.
During 2019 I also attended another doctor in Dublin and he specializes in regenerative/functional medicine. His investigations included intensive blood testing on me yet bloods were somewhat normal. My pancreas was under pressure and signs of damage from what we thought was from my Stills Disease attack in 2016. I was put on diabetic medication to support my pancreas. I was also diagnosed with “chronic Fatigue“ yet I knew, like I always knew there was something else wrong. There was something underlying that had never been uncovered.
Back in 2016 I had tested by the hospital for “Lyme Disease” yet it came back with a negative result. From that day I always wondered “could it be?”
Fast forward to Jan 2020 and a lot of research I discovered testing for Lyme Disease in Ireland is not definite enough. In simple The Lyme parasite has the ability to hide in the body (its host) and not show in the blood and has the ability to change its DNA if under threat. When I was around 8 yrs. old I remember I had a tick bite on my tummy whilst on holiday in West Cork. My dad removed the tick. Around that time I had a red circular rash in around bite site yet connection was never made to the tick bite. My parents suspected ring worn due to another child in the area having the same. However the rash went away and I don’t have any memory of being sick. My herbalist encouragingly since 2017 always suspected Lyme infection. Subsequently she herself tested positive for Lyme infection through BCA labs in Germany. BCA specialize in testing and treating Lyme disease and Co infections. I decided I needed to get tested properly. My herbalist ordered me a test kit from Germany yet now I needed to find someone to take my blood samples. Eventually with unbelievable support my doctor in Dublin agreed without hesitation to support me. I sent my bloods by courier back to Germany and 1 week later got my results back. I had tested positive for Borrelia Lyme infection. My immune system in the same testing only showed a 1% presence. My initial reaction was ‘relief’, ‘I am not insane and all my symptoms are real’. Obviously the above writing only touches on the more prominent symptoms. I always hid most things and got on as I also questioned my own sanity. How could someone have so many symptoms along with depression and other struggles.
Where do I go from here?.....My Gp on seeing my results referred me immediately to an infectious disease specialist in Dublin. Straight away I hit another obstacle as I cannot get an initial appointment until late July/Aug 2020. I know from research and backed with research from Germany that treatment in Ireland is not as comprehensive as I need. I am suffering far too long and now my sanity that I have a parasite living in me comes with its own terrifying anxieties. Therefore I need to go to Germany where I know I can get appointments and treatment within the next few weeks. I have 1 massive obstacle.....COST. Treatment in Germany would consist of initial 3 week constant treatment in BCA specialized hospital. This treatment consists of further testing along with intravenous treatments. The treatment costs anything up to €10,000 for 1 three week treatment at a time. Until I get my initial
treatment I have no idea to how my body will react or to how much treatment I require. This cost includes my accommodation.
This is where I ask for ‘help’. I have health cover yet my health cover does not cover treatment or costs outside of Ireland. I have on 2 occasions applied for a medical card and although I have a long-term illness (Stills Disease) I have been refused!!!! (Is anyone surprised??)I am caught, I need and want treatment in Germany but due to constant financial strains over the past no. of years, in particular not being able to work I cannot cover the costs alone. I cannot get a loan because I will not be able to work and will have no income as such to meet repayments. My partner has already been under strain to pay our current bills since I have been out of fulltime work, particularly since operations of 2019. My family have offered to help me as much as they can yet I feel I cannot put my financial strain onto any other household. I have no way to forecast when I can return to normal work as such. If it was just the actual treatment I needed to cover it may not seem so overwhelming yet reality is I still have to pay my bills and I also need time to recover. I Martina am terrified to ask for help... Yet here it goes ...I have Lyme Disease, Can you help me please?