Saturday, 26th March, 2016
Start of Treatment
I spend the next few weeks in a daze, unable to comprehend what was happening to me. It seemed that my life had collapsed right in front of my eyes and I was powerless to do anything about it. I felt scared, alone and increasingly anxious about my future and my health. There was a constant fear running through my mind, if I will ever get better and go back to the life that I once had only a short while ago. I kept asking myself, ‘what if I don’t get better, then what..?’ I tried to keep a positive frame of mind and encouraged myself by reading ‘success stories’ of people who were in remission from long-term Lyme treatment. Whilst all of this helped me immensely, my concerns however still prevailed. I was broken, angry and very frustrated that no one seemed to understand my pain or the seriousness of my illness. This was not just an ordinary bacterial infection. This was a deadly disease that had ruthlessly taken over my body and was out to destroy it. To give myself the best fighting chance, I spent hours on the internet learning about Lyme Disease and its co-infections. The more I read, the more I panicked and became disheartened. This was not going to be an easy disease to treat, in fact it was going to be very hard and difficult. It was going to be a long and tough battle.
Given my positive test results for Lyme Disease, the private Medical Group in the UK agreed to treat me and I commenced treatment in the first week of February 2014. The Clinical Director whom I saw back in January advised 1 month of IV treatment of the antibiotic Ceftriaxone, which was to be administered 6 days per week at their Clinic. The 45 minute journey was henceforth made daily in the hope that I would soon see improvements and that this nightmare would be over.
As well as being on antibiotics, I also had to take an enormous amount of supplements to support my body and general health. These supplements were not cheap and I spent a huge amount of my savings on them, some of which were totally unnecessary. The Medical Director also insisted that I have a consultation with their Nutritionist. More expense was added to my list. I was advised to give up gluten, sugar, dairy and alcohol (of course!) and to try and live the rest of my life on a meagre portion of steamed vegetables! Fantastic! I left the consultation completely demoralised and broke down in tears. In order to get rid of this disease, I would have to completely change my lifestyle and my eating habits. Having already lost so much, I would now have to kill my taste buds too.
The days turn into weeks, but I see no improvement in my symptoms. My condition is just as bad, as it was at the beginning of treatment. I even fail to experience the dreaded Herxheimer reaction, which is so infamously associated with this disease. Something is terribly wrong. I am not responding to treatment and I fail to understand why. I discussed my concerns with the old, business like doctor but she offered no real insight and rather insisted on more expensive auto-immune tests to be carried out. I refused point blank. I questioned her about the possibility of having co-infections, which may be hindering my progress. The doctor however, assured me that Borrelia Burdgorferi is my only problem. I am not convinced, but still somehow chose to believe her.
The four weeks pass quickly and none of my symptoms have been alleviated. All of my questions to the Medical Director have gone unanswered or have been conveniently ignored. My condition continues to deteriorate and I start to develop new neurological symptoms. Nothing is working. The Clinic fails to understand my symptoms and do not offer a new plan of treatment. Once again, I feel immense despair and my fears come rolling back. I am not happy with my treatment and the lack of progress. At the same time, I also started questioning the Clinic’s competence in treating Lyme Disease and am convinced that they are not experienced enough of treating such a complex illness.
My initial gut instinct was indeed correct. This was not going to be the place that would get me better. Going to this Clinic was my sixth mistake having wasted so much precious time and money and not improving at the same time. I was out of luck once again. My future now looked even more uncertain and I was quickly losing the will to live.
Tired and in desperate need for help, I now had to look elsewhere and begin my search all over again for a new doctor.