Saturday, 2nd April, 2016
The 7th Mistake
Having ‘discharged’ myself from the Medical Centre, I was now back at square one. I needed to find another more qualified and experienced Lyme specialist (LLMD) and it needed to be quick. From my hours of research, it was clear to me that America was the best place to be treated for tick-borne diseases. Not only are the doctors more experienced but they also offer cutting-edge and innovative treatment that the European clinics are just not able to match. I knew that this is where I should go. My condition however was such, that I was unable to contemplate such a long journey given the severity of my neurological symptoms and my constant anxiety and panic attacks. There was no way, I could have made a 16 hour round trip. Another solution had to be found. After some more hours of research, I found what at the time seemed to be the perfect answer.
My first consultation with the Lyme Specialist over Skype lasted just over one and a half hours. This was a doctor based on the West-Coast of the USA and offered Skype consultations to Lyme patients who were either too poorly or unable to fly over to see him in person. It was an ideal compromise. I would receive expert treatment from the comfort of my own living room! I answered all of his questions and the Practitioner concurred with the diagnosis of Lyme Disease. I was told that I would be looking at another 12 months of treatment to be symptom free. It sounded good. What did raise some ‘red flags’ for me however, was that he didn’t see any signs of co-infections. In addition, he refused to put me on a combination therapy of antibiotics, which would kill all of the different forms of Borrelia. Upon my questioning, I was told that having co-infections was ‘rare’ and that all of my symptoms stemmed from Borrelia itself. I would not need more than two antibiotics, as I was ‘covered,’ according to him. I was not entirely convinced but then I’m not a Lyme doctor either, so his diagnosis and treatment had to be correct…
I happily embarked on my new treatment plan in March 2014. Soon after starting the oral antibiotics, I began experiencing new and painful symptoms in my body. I was pleased because at long last, I was experiencing a Herxherimer reaction! The infections in my body were finally being killed after so many months of anguish. After a couple of weeks, I started seeing small improvements in my symptoms. The muscles in my thighs were starting to get their strength back and I was beginning to feel a bit more ‘clear headed.’ I was overjoyed with my progress but most of all grateful to my new doctor for treating me so well, or so I thought.
Fast forward to August, six months after starting with my Lyme doctor, I suddenly get worse. I start to develop other frightening neurological symptoms. My whole body starts to buzz and vibrate, as if I have a hundred mobile phones going off inside me. I constantly have a drunken feeling in my head and my dizziness also takes on a new form with my head endlessly swaying from side to side. At the same time, I also start getting painful spasms in my spine and my fatigue increases tenfold. I am once again bedridden. All of my improvements have vanished and with it my hope to get well.
By now, I had read so much about Lyme Disease that I was convinced that I was also suffering from the co-infections, Bartonella and Babesia. When a person has Lyme Disease, it is next to impossible to not have co-infections, as the ticks harbour so many other ‘dirty’ bacteria, viruses and parasites that they all get transmitted upon a bite. In fact, all good LLMD’s take a ‘broad brush’ approach and usually treat their patients for all of the known pathogens. So why was I not being treated for all of these?
I discussed my concerns with my doctor over Skype and he readily agreed with my suspicions. My sudden decline and little improvement in my neurological symptoms all seemed to point towards the infection Bartonella. I was put on a new plan, which this time incorporated antibiotics to kill Bartonella.
The new, high dosed antibiotics, made a difference to some of my neurological symptoms thus confirming my suspicions of Bartonella. I was having horrible herxes, which put me to bed for several weeks. The pain in my entire body had become unbearable. I felt like I was constantly in and out of consciousness. My mind was confused and my head was filled with so much pressure that I felt that my brain was going to explode! I was sure that I was not going to survive and that my time was up. Still, I continued taking the medications, which with hindsight now, I should have stopped.
Over the weeks, my health became increasingly more fragile and once again the new antibiotics had stopped working. At the same time, I was also struck down with terrible insomnia, which made matters even worse. My nervous system was overworked and had gone into a ‘fight or flight mode.’ I couldn’t rest, sleep or be still. My body was continually vibrating, buzzing and burning. I wanted to die. There seemed to be no end to this pain or suffering and no one could really understand what was going on inside my body. I was tired and had aged beyond my years.
By now, I had understood that I was too complex to be treated over Skype. My doctor was unable to understand the severity of my symptoms and could no longer help me. All of the major co-infections had been missed and by not treating them properly, my nervous system had crashed and my health was getting worse. I had to do something to save my life.
I knew that these past 8 months had been a mistake. A mistake so serious that it nearly cost me my life. This was my seventh and hopefully final mistake that I have made during my Lyme journey. Like the seven deadly sins, I too had committed seven blunders that have been detrimental to my health. If I had taken the decision, which I was now going to make 9 months later, I would have been a completely different person. I would have reached a state of remission and would have freed myself from the cruel clutches of this disease. It was however, not to be.
Scared, discouraged and completely broken down, I found myself standing at a crossroad. This time however, I had to make the right decision for the sake of my health and life. There was no looking back now. I had to look straight ahead and bravely travel down a new path once again.