Being Diagnosed with Lyme Disease

My story (sadly) seems fairly common.

I’ve spoken before about becoming ill in 2013, however until this week I haven’t spoken in detail about my diagnosis’s nor being diagnosed with chronic Lyme Disease. In a nutshell in the run up to May 2013 I was fairly run down. I was working extremely long hours, travelling tons with my job and had lots of stress in my personal life. I was basically burning the candle at both ends. I realised I needed a break and booked an ayuervedic and yoga retreat in India. Whilst I was there I unknowingly picked up a couple of minor infections, which seem to be the proverbial straw that broke the camels back.

My health deteriorated rapidly with a seemingly unrelated set of developing symptoms. By early 2014, some of the top consultants in London, across multiple disciplines, hadn’t been able to get to the bottom of my issues. I was on 21 prescription tablets a day, feeling no better. I was forced to stop working. Over the months and years I ended up being diagnosed with a list of chronic conditions (including Fibromyalgia, Post Infectious Chronic Fatigue, Postual Otho Tacycardiac Syndrome and Atypical Chronic Migraine) and want sent home with advice to manage the conditions.

Not once was Lyme disease mentioned. Not once was I tested for Lyme disease. Despite having common symptoms.

I accepted this to a point, but sought out a range of fabulous alternative practitioners focusing on boosting my gut, immune system and adrenal function. Though diet, lifestyle and supplements I was able to manage some of the symptoms, but still very unwell. At one meeting with my American naturopath her colleague asked if I’d been tested for Lyme disease. I initially discounted it as a possibility as the only time I remember being bitten by a tick was almost 20 years ago in the New Forest. However, after looking into it I decided I needed to at least discount it. I decided to be tested privately (as I it seems the NHS test is unreliable and misses around 50% of cases). You can imagine my surprise when the test for both Lyme disease and some associated infections were positive. At first it was a great relief as FINALLY I knew what was wrong and could therefore treat it. This this quickly turned to dismay when I found that awareness and treatment options in the UK were very limited.

I still have the diagnosis’s of other chronic conditions such as Chronic Fatigue Syndrome and Fibromyalgia. Does this new test result mean these were misdiagnosis’s and I don’t have these conditions? Are these a symptom of Lyme disease? Do I have these as well as Lyme disease? I guess in years to come the science will be there to answer these questions categorically, though at present the doctors I have spoken to seem in disagreement.

In future posts I’ll talk more on this, but for now I’ll leave you with some facts courtesy of the Lyme Disease Challenge.

Facts about Lyme Disease:

  • Children are at the highest risk of contracting Lyme Disease and are more vulnerable to central nervous system infections.
  • Transmission of Lyme Disease and other infections can take place in a matter of minutes, particularly if the tick is not removed properly.
  • Lyme Disease has been called “The Great Imitator” and can be mistaken for ALS, MS, Chronic Fatigue Syndrome, Fibromyalgia, Alzheimer’s, Parkinson’s, autism, and other illnesses.
  • Research suggests that Lyme Disease and other infections can be spread from mother to baby during pregnancy.
  • Studies show that standard laboratory tests to diagnose Lyme Disease miss approximately half of actual cases, leading to misdiagnosis and an infection that is more difficult to treat.
  • Over 63% of patients treated for Lyme Disease continue to suffer symptoms that can be debilitating.
  • Fewer than 50% of patients with Lyme Disease recall a tick bite or any rash.
  • There are no tests available to prove that the bacteria that causes Lyme Disease has been eradicated or that the patient is cured after treatment.
  • Ticks can carry many different types of bacterial, viral and parasitic infections – some life-threatening – which can further complicate tick-borne disease diagnosis, treatment and recovery.

Find out more:

If you’re worried about Lyme disease you can read more and find testing options here and read about the challenges with the NHS here.

 

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