Canonical Voices

What Julian Edwards talks about

Posts tagged with 'personal'

bigjools

Relapsed again

It seemed too good to be true after my last post, and it was.  Within days I had relapsed after finishing the last course of Bactrim my symptoms were back, worse than ever.  So bad, that I had a trip to hospital courtesy of an ambulance which had to be called because I was in so much pain.  Oh sweet, sweet morphine, you are a cruel mistress.

The Bactrim was only holding the Bartonella at bay, it seems. My LLMD has now put me on a month’s worth of Ciprofloxacin, after verifying that a sore tendon was not too damaged.  Why do that?  Well, Cipro screws up tendons and ligaments if you take it too long so I had to verify that things were OK to start with.  I also have to take it easy and not exert myself too much in case I damage weakened tendons.

The one piece of good news is that a recent endoscopy showed no fungal infection from all the antibiotics I’ve been taking.  Unfortunately an echo test on my heart still shows a lot of fluid in the pericardial sac and I still have a huge amount of pain there which keeps me awake at night.

Because of all this, I am sad to be missing a work function in Austin this week, but it would have been foolish to travel with the tendon risk (moving my luggage would be a problem), my high levels of fatigue, and not to mention the pericardial fluid can become life-threatening at any time.


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bigjools

My Road Through Hell

 

Hell

I’ve now been on treatment for Lyme disease for a little over twelve months.  Without a doubt, this has been the worst twelve months of my entire life.  It’s almost impossible to convey the range of pain that I have endured, the mental anguish, and the struggle to find the will to live.

Six months ago I was about at rock bottom.  I was going trough herxes from hell, suffering from heart complications including cardiac pauses (my heart would stop for several seconds at a time), and headaches that felt like someone was driving a pick axe into my skull. Then there was the brain fog; the confusion and memory loss that left me feeling stupid and helpless in front of people who just didn’t understand how I could not remember simple things I had talked about with them only a few hours ago.

On top of that, I had extreme fatigue that left me unable to climb the stairs at home without stopping every few steps to get my strength back in my legs.  Many of my days have been spent as a quivering mess on the floor, unable to speak, move or do anything because I was in so much pain and close to passing out.

In short, I was pretty fucked and thought I was about to die at any time.

Then I discovered an antibiotic that was actually making a difference to my heart symptoms—it’s called Bactrim (or Trimethoprim/sulfamethoxazole to give it its full name).  I started taking it in late December and two weeks later I was heart symptom free!  The course of drugs then ran out (I had 4 weeks’ worth) and ten days later I had relapsed and was getting chest pains and palpitations again.  I started another month’s course and felt better again after a couple of weeks, so it was clear that this drug was doing something to help me with my Bartonella infection.

It struck me that I have been so ill for a long time that I hadn’t really noticed that I was slowly getting better lately.  At least I hope I am getting better — I’m now at a “wait and see” stage after having stopped the Bactrim for a second time and hoping to hell that I don’t have another relapse.  I’m probably about 50% better than I was a year ago, I now have to wait for the last remnants of the Lyme and Bartonella bacteria to be driven out of my system.


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bigjools

Rifampicin

Just started a new antibiotic called rifampicin. Getting an immediate and very powerful herx from it. Looking forward to another two week headache… :-/


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bigjools

The daily grind

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bigjools

Headaches

I’ve been experiencing bad headaches all week and today’s is awful.  I don’t know if it’s the drugs starting to work and causing a herx or if I just have a headache from the disease. 400mg of Ibuprofen 2.5 hours ago hasn’t helped much :(


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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!


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