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Down with Lyme | The Long Awaited Appointment

Tuesday, 9th February, 2016

The Long Awaited Appointment

Counting down the days with great impatience, the 8th January 2014 finally arrives. A New Year, a new start to finding a diagnosis for my illness, a new renewal of hope.

Feeling confident yet apprehensive, my husband and I set off for our first appointment at the Medical Centre known for testing and treating Lyme Disease. After a forty-five minute journey, we arrive at a very shabby and dated looking industrial estate. The 70’s old style dilapidated office building resembles nothing to what we had in mind. Worried glances are exchanged, yet we try hard to remain positive. My mum’s words of wisdom suddenly come to mind, “remember to never judge a book by its cover!”

After a 20 minute wait, we are finally called in to meet with the Medical Director of the Clinic. We find a very aged but an experienced looking woman sitting in front of us. Pleasantries are exchanged and I soon announce my suspicions of having Lyme Disease. Reciting my medical history at full speed, I give special importance to the events of the past six months. The old lady nods her head with agreement, which further fills me with confidence that I am in fact correct about my diagnosis.

A quick physical examination is carried out but fails to reveal any real clues contributing to my illness. My weight however, seems to be a much bigger issue for the Medical Director. It appears that my extra kilos could be behind my disabling neuro symptoms. Once again, I feel angry and disappointed that a ‘Lyme Specialist’ is unable to understand the devastating nature and incredible complexity of tick-borne disease.

Trying hard to control my temper and not show my ‘wild’ side once more, I politely remind her that I have been bedbound and unable to walk for the past six months. My symptoms are most definitely not due to my weight but from the fact I am suffering from a chronic infectious disease. A life-altering disease that needs attention and treatment straight away.

Climbing off from the examination couch, I get an awful feeling that this is perhaps not the place nor the person who will make me better and return my old, happy life to me. My heart sinks once again.

It is decided that extensive blood tests will need to be carried out to confirm a diagnosis of Lyme Disease. The bloods will be sent to specialist laboratories located in America and in Germany, as their testing methods are far more modern and advanced than those of the UK. A daunting pile of paperwork is filled out and we are recommended to carry out tests for all the important pathogens such as Borrelia Burgdorferi, Babesia Microti, Human Monocytic Ehrlichiosis, and finally Bartonella Henselae. All of these are deadly bacterial infections that unfortunately get classified under the ‘umbrella’ term of Lyme Disease.

We sign off the paperwork and write out a cheque for an astronomical amount of money. The money that we had worked so hard to save. The money that was saved to celebrate a special occasion. This very money is now being used instead for testing some microorganisms that only a handful of people have heard of or understand. Why? Because the medical community in the UK refuses to recognise the existence of these widespread infections and hence only offers a limited and often inaccurate testing service on the NHS.

That punnet of cherries had indeed cost me very dearly and for which I was going to indefinitely pay with my health, money and time.

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