Fighting Dystonia, Chronic Lyme Disease & EDS Type 3… any questions?

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.

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Comments on: "Todays Hospital Appointment." (3)

  1. Hello! I truly appreciate you sharing your experience and your time and effort reaching out to those that maybe you can be of help. Well, you helped me a lot. Getting some information and also having Chronic Lyme Disease myself for many years and recently diagnosed last year with Cervical Dystonia is related. Thank you very much and this will help me a lot to talk to my neurologist even though I know many of them ( doctors ) don’t believe on Lyme even if your lab work is positive. My heart is damaged, many hospital stays. They kept wondering why but they still don’t want to believe on Lyme Desease that it exist. That that is what is destroying our vital organs. Oh well, we’ll continue the best we know how to live and the best possible way to accept our conditions despite the unending pain and sufferings and the depression that comes along with it , let’s continue to fight! Again , thank you for your courage and for helping not only me,but many many more out there!

    • Dear Jade, I cannot thank you enough for your lovely comment. Today I am struggling with my lyme and dystonia symptoms, your comment put a smile back on my face. So thank you!

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