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.

In utero

My 2nd son (6 years old) tested positive on the Western Blot for Lyme.  I was always a bit suspicious and now my fears are confirmed.  He had a few signs, like dark circles around his eyes, a raging thirst all the time, and behavioural problems.

He is most likely to have got it in utero, which also probably means that my wife and our youngest two twins have it (they have dark circles under their eyes too).  Thankfully my eldest seems asymptomatic.

Under advice from my doctor, I’m trying number two out with some Samento and Banderol. He says we should see an improvement in behaviour in 4-6 weeks and then we can consider moving on to antibiotics.

As for the wife – once I am stable we’ll try her out with some doxycycline to see if she herxes.  We don’t want her debilitated by treatment at the same time as me…

Rifampicin continued…

I have had a reasonable amount of success with the Rifampicin.  My heart palpitations pretty much stopped over the course of a couple of weeks and stayed away until the end of that prescription.  My doctor put me on a doubled dose for another 6 weeks so let’s see how that goes…

In the meantime, the palpitations came back a little.  I’m not sure whether this is because I had a 4 day gap between courses or whether it’s part of a herx or otherwise caused by the increased dose.

I’m committed to flying across the Pacific at the weekend (I’m going to San Francisco for a week) — I hope I don’t get an attack on the plane :(

Unscheduled hospital visits…

… yeah, so I had some really bad heart palpitations 2 nights ago and ended up calling an ambulance at 1am.  This has been happening quite a lot in the evenings lately, but this time it was unbearably painful.

Long story short, seems like the bartonella is causing huge ectopic beats as it interferes with electrical impulses in the body.  I’ll be seeing a specialist next week to see if I can find a way of minimising problems before starting rifampicin.