This morning my mother and I travelled to Warwickshire to see an Infectious Disease Specialist who supposedly (according to his secretary) treats Chronic Lyme Disease. I left the appointment with extremely mixed feelings. On one hand I was rather disappointed and on the other hand I was satisfied with what he has said he shall do.
At the start of my appointment he made it rather clear that he did not really believe in chronic lyme and thought that ongoing lyme could be cured with a 4 week course of antibiotics. He also thought Lyme Disease could cure itself…I have not heard or read about this. After hearing about my life medical history and an examination he informed us that he was certain that I had had Lyme Disease for a few years but did not think that I still had it. However he said that I at least deserved to have testing done. Therefore he is going to write to my GP and have my GP arrange for me to have an IGM (that may be wrong) blood test and a lumbar puncture for PCP testing to see if there is any lyme in me. Lyme disease testing is inaccurate at the best of times and the fact that I am on antibiotics for Lyme Disease at the moment means that the antibodies shall be suppressed meaning a negative result is more likely. I expressed my concerns to the doctor, who admitted this could happen. However I am very happy he is going to ask for these tests to be arranged.
He was a lovely guy, however I am unsure how I feel about it all. I am going to go ahead with the tests. If they come back negative then I shall book myself into the Breakspear hospital and go through this all again. One big positive out of this appointment is that he confirmed our suspicions that I did have Lyme. That there, in my eyes, is the reason I have Dystonia. My neurologist admitted that they know that Lyme disease can cause Dystonia. It gives me some peace of mind to know that there is a reason behind it all. Now I just have to wait for the NHS to arrange these tests.
Today was just a slightly wobbly stepping stone to future treatment. One way or another I will get to where I need to be.
I spend 99% of my time shut up in my room due to Dystonia. Throughout the months leading up to this summer I was concerned as to how my body was going to react as bright light triggers my eye spasms (I am unable to currently wear my sunglasses or glasses as it causes a facial spasm) and I have to be careful in the sunlight as my antibiotics for suspected Lyme Disease causes light sensitivity. I had been thinking for a while now that I was just going to have accept that I would be having to spend the whole of the summer indoors.
It turns out I need not have been so pessimistic. This week I have been out in the garden several times with my family, family friends and had two BBQ’s. I was overjoyed to be out socializing with our family friends. We made sure I was in the shade so that both my body and eyes were protected. It was perfect and I had such a great time.
This achievement has left me thrilled as it has reassured me that I can enjoy this summer and the summers to come without worry. I only have to be a bit careful and that’s not much of an issue. Being out in the warmth and socializing has really lifted my spirits and left me feeling overjoyed and calm.
I look forward to seeing what the rest of the summer has in store.
The last couple of days by spasms have been extremely painful which has resulted in an increase of seizures. My necks spasms in particular seem to set these seizures off. Even though the increase in neck spasms is hideous it shows just how much of an incredible effect the Botox had for me. The Botox decreased the severity and frequency of them dramatically.
I finally heard from my consultant the other day. I received an email saying that he would contact me with a date for my Botox injections, I am hoping that this will be soon. He did not address the fact that despite on April 5th he said would admit me for a week and still hasn’t. I have started to accept that fact that this is rather likely to never happen, which I am disappointed about.
I have started making a list of questions I want to ask him. I would like him to consider the fact that Lyme Disease can cause Dystonia and that it could be the root of my problems. I plan on asking him to remain open-minded during the appointment as well, as I would like to discuss with him again certain medications I would like to try. I also want to have an open discussion with him about Deep Brain Stimulation (DBS).
Whilst there is a possibility that my symptoms could improve if it turns out I have Lyme Disease, there is still a real possibility that some of my more debilitating spasms such as the ones effecting my legs could remain in the same state as they are now. I just want my consultant to consider it. I am not asking for it just yet and I would happily try all the medications and jump through all the hoops they want me to first. However at the end of the day I would rather not spend the rest of my life in a wheelchair, and whilst DBS does not offer a cure, it offers the possibility that I may not have to rely on the wheelchair all the time. I am hoping that he will understand that I don’t want him to say yes or no just yet, that I just want him to have a think about it.
One thing I have learned through all of this is that if you don’t ask and plant that little seed in the doctor’s mind then you definitely won’t get it. If, however, you plant that little seed it may just grow into a real treatment avenue which could offer hope. There is no harm in asking!
Over the last couple of days I have not felt to great and my spasms have been awful. I have found myself going from being boiling hot one moment to shaking with cold the next, along with some interesting spasms. My legs latest trick is to spasm so that the leg is completely back to front, which is not a comfortable position to be in. I am going to try and get my mum to capture a picture of it the next time it happens.
Thankfully today I am feeling slightly more like myself and my spasms have been less extreme. I don’t know if the antibiotics that I am on as a trial for possible Lyme Disease caused the increase in spasms or if I was just under the weather.
I am still waiting to hear from my consultant in regards to being admitted for a week so that I can get some help. We last heard from him on around the 15th April and despite us sending him several emails and chasing his secretary we have heard nothing. When ever I have an appointment with my consultant he seems great, however I am getting more and more frustrated with the lack of help I am getting! Everything that was being arranged for me seems to be not quiet what he gave me the impression it would be. Last October he put me on the waiting list for an inpatient intensive therapy program, and told me that the waiting list for the program was about a year long. However I had an appointment up at the hospital the other day where I was interviewed by two members of staff who will at some point decide IF they are going to admit me to the ward or not. IF I do get admitted it will not be until around June 2014.
I struggle to believe that there is no other help out there that could be put in place for me now. I understand that hospital wards are busy, however surly there must somewhere be at least an outpatient Neuro Physiotherapy service that I could be referred to This is going to be something I will discuss with him when I eventually get to see him. I am hoping that I will at least have an outpatient appointment with him soon as I am in need of my Botox injections for my jaw and neck to be redone.
Until my consultant sorts everything out I am going to keep my fingers crossed that Lyme Disease is what has caused this mess, as at least then I know the cause and that is one thing I can stop worrying about.