Living with Lyme

Slow killer.

Slow killer.

I am writing this blog post because I want to raise awareness of an increasingly common condition across the world.  This is my history leading up to my recent discovery.

After many years of thinking something was wrong with me and not knowing whether I was crazy or just imagining things, I was recently diagnosed with Lyme Disease.  It is a horrible disease with myriad symptoms (I have about 90% of those listed) that are easily misdiagnosed by doctors.  The disease is caused by a bacteria called Borrelia and is transmitted through tick bites.  Not everyone realises that they’ve had a tick bite and certainly I don’t remember one.

It started with chest pains

I originally visited a doctor a couple of years ago because I was getting a lot of chest pain.  After a short time using a portable ECG monitor he diagnosed me with Atrial Ectopic Beats, a supposedly harmless but sometimes debilitating condition, and I certainly felt debilitated every time my heart started palpitating.  His diagnosis led him to prescribe beta-blockers to help prevent the extra beats that were occurring in my heart.  Needless to say, it didn’t really help me and left me feeling generally worse as my heart was now unable to pump blood at any rate required above doing minimal exercise.  I took myself off these because I felt that I’d rather deal with the occasional chest pain than feel awful 24 hours a day.

The first discovery – pericarditis

Over the next year the condition sporadically got worse and I started getting really sharp pains in my chest.  After a few trips to hospital in the back of an ambulance I was fortunate enough to find a cardiologist who was prepared to do some more investigations rather than brushing things under the rug.  He scheduled me for a Stress Echocardiogram which basically entails ultrasound imaging of your heart before and after running on a treadmill while hooked up to an ECG print.  The upshot of this exam was that my heart was fine, but I was now diagnosed with a new condition called pericarditis.

Pericarditis is an inflammation of the pericardium – the sac that surrounds your heart – and is responsible for causing the palpitations.  I had about 7mm of fluid trapped between my heart and my pericardium.  My initial reaction to this was one of relief.  “Great!” I thought, now we can treat it.  I was prescribed a course of a medicine called colchicine.  It is usually used to treat gout, but is also known to specifically treat pericarditis quite effectively.

Treatment, but still getting worse

One month after starting to take the colchicine I felt no difference in my symptoms at all.  This left me feeling a little depressed, especially since I’ve been experiencing increasing symptoms and took myself to hospital yet again as I was worried about having a cardiac tamponade, which is fatal if not treated quickly.  I went back to the cardiologist to see what else I could do.  He prescribed me some powerful steroids – immuno-suppressants – the intention being to stop my body from reacting to whatever it disliked that was causing the inflammation around my heart.

At this point I was at rock bottom – the idea of being on steroids to control the condition filled me with dread.  I have previously taken topical steroids for skin conditions and I am all too aware of their nasty side effects.  So, I made a decision to start being more proactive in helping myself and set out to learn more about this condition called pericarditis.

The second discovery

After a bit of Googling I found this pericarditis support group. It was quite reassuring to find a bunch of other people who were going through the same thing as me, although still fairly depressing that many people were either stuck on steroids or just learning to live with the pain.  Eventually I came across this post entitled “Lyme Disease Checklist” – I had never heard of this Lyme thing before so I clicked through and started reading.

What I read in that post has been life-changing.

It was immediately apparent to me that I ticked nearly all of the boxes on the checklist.  It made me realise that things that had been niggling me in the back of my head were actually real and that this could finally be an underlying cause for all of my symptoms.  These are symptoms that are going back for some years now – I had thought that perhaps I was just getting old and some mental faculties were waning as my short-term memory and concentration levels had been bad and getting worse, and suffering from severe fatigue and getting joint pains.  It turns out I can blame it all on Lyme Disease.

Finding a doctor

At this point I realised that my cardiologist was not going to be able to help with this, so I set out to find someone who could.  The support group postings had been very clear about one thing: finding a doctor is not easy.  It seems as though there ‘s a lot of controversy about Lyme and finding a Lyme literate doctor is essential.  This appears to be particularly hard here in Australia as there’s severe resistance to belief that it can be caught here (I caught mine elsewhere though) as it is seen as a northern hemisphere problem.  I discovered the Lyme Disease Association of Australia who put me on to a doctor 2 hours north of Brisbane called Andrew Ladhams.  I drove up to see him for an initial consultation and he recommended that I send some blood to a lab in California that specialises in diagnosing Lyme disease.  I got the results 3 weeks later and they were inconclusive, showing some positive and some indicative test bands.  However since the test is notoriously unreliable the recommendation is that the test is used in conjunction with a medical diagnosis.  Dr Ladhams decided that I should begin a course of treatment of antimalarial and antibiotics.

He also said that based on the test results, it’s possible that the strain of Borrelia I have could be from South East Asia.  I have not been there since the year 2002.  That means I’ve had this disease for over 10 years.

Antibiotics work by attacking bacteria when they are weakest – at the point they divide.  Most bacteria divides every few minutes, but the Borrelia bacteria divides every 12-24 hours.  This means that treatment has to take much longer than a regular course, probably 6-12 months.

I am now two weeks into my treatment.  I am ramping up the antimalarial before starting on the antibiotics.  I am hopeful that I’ll start feeling better in a few weeks, however it remains to be seen whether I will regain all my faculties as permanent damage could have occurred, particularly in my joints.

I will keep blogging about this disease as my treatment progresses, and if anyone reading this has any doubts about their own symptoms I urge you to visit a Lyme literate doctor.  If I make even one person aware and help them out as a result of this blog, I’ll be happy.

Wish me luck!

12 thoughts on “Living with Lyme

  1. I’ve said it before elsewhere, but I’m really glad that you’ve finally got a diagnosis that makes sense, and that you’re geting treatment. It turns out that I quite like you (in a manly fashion) and I look forward to you making me laugh like a drain many more times in years to come.

  2. Wow. Amazing post bigjools. Very informative, it’s just a shame that you even have to write it. I’m very glad that you have a diagnosis and are able to get treatment. Sending you lots of love and hugs up from Sydney and wishing you well. x x x

    • Thank you Kitty Kat. I hope we get to meet up some time. I wanted to be in Sydney this weekend as the mighty Van Halen is playing at Stonefest but alas it’s also my son’s birthday.

      • Absolutely. I wanted to come to Jenny’s 40th, but it clashed with my boyfriend moving in. I’m keen to catch up with you over the phone though. Could you email me your mobile number so I can give you a call and we can have a good old chin wag? kat@thoughtcloudcollective.com x x x

  3. Julian-Just reading through your blog. I hope you are doing well so far and not having too many side effects. We just found out that Angie has recently been diagnosed with Chronic Fatigue and Fibromyalgia, along with her chronic autoimmune issues. I am going to check with her to see if she has ever been tested for Lyme disease-she is having a really hard time right now and is pretty incapacitated. Sounds like they are still trying to figure out what is really wrong with her-she has so many of the same symptoms listed for Lyme disease. I am glad that you finally figured out what was wrong so it can be treated!

  4. Interesting… I had Lyme for 10 years before diagnosis. And the diagnosis was in 1999. I was treated very aggressively but still have so many problems including chronic pericarditis.. I wish you the best,, I was not aware of Lyme in Australia. It’s very hard to find good Lyme doctors here in the US. It depends where you live but I don’t like the ones near me. They don’t seem up to date. It gets very depressing! Most people get better with treatment so good luck!!!

    • I know I didn’t get my Lyme in Australia, but my LLMD is insistent it’s here. I hope your pericarditis gets better, it’s very debilitating… Good luck.

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