Day One


This is the day I got Lyme

This is the day I got Lyme

Day One

And so it begins

I like to read blogs, but I never thought to write one myself.  I guess I am a snoop more than I am someone who wants to be centre of things.  But I find myself in a crisis with so few places to turn for information, nor details of other people’s first hand experience.  So here is my leap – sharing the gut awful misery of lyme disease, in the hope that those who suffer it too might help me along my path, that those new to this, might find their lyme-road a little easier, or even better, a little shorter because I am sharing something useful.

In December 2012 I was bitten by a tick.  My first tick.  My only tick.  Less than a year on I have suffered an alaphylaxis allergic reaction, viril meningitis twice, and there are days I can barely walk.  Because of one tick, I have been forced to take extended sick leave from my work until the 6th January 2014.

I have Lyme disease, and the alpha-gal allergy. I am furious, I am scared out of my mind, and I am determined that I will not be like this forever.

So this is day one – the first day that I will keep a blog about the treatments I try, the symptoms I feel and the research I discover about this most mysterious disease.

Two weeks ago I took myself off most of my medications, I had a bad herx, and realized that things had to change.  I couldn’t fight the disease and hold down a job. So, yesterday I finished up at work until January next year, and this morning I started my medicines again – but slowly this time.

Am I scared?  I am terrified. I want this over, but that road seems to be such a rough one.  Do I really have to be made sicker in order to kill off this bacteria? It seems I do.

Even more than how much I hate the personal agony, I hate the fear I see in my husband’s eyes.  He loves me, and when things are bad he sits up half the night, just watching to see if I am breathing. My son, not yet four, has watched me turn from a mother who walked him through rain forests every single day, to a woman who lies on the lounge and says “honey, maybe today we can watch Bugs Bunny on the ipad”. This is not a life.  I don’t want my son’s picture of me to be of a woman holding back tears in her eyes.

I hate this disease, and I tell you this – I WILL NOT LET IT THRIVE IN MY BODY.

I know I am not supposed to drink coffee, but for now I allow myself one cup a day – usually at 5am, when I have given up on being able to sleep.  By about 7am I force some food into me so that I can take my antibiotics.

At the moment I am taking

  • 2 x Clarithromycin (250mg) – twice daily.  I used to take doxycycline but I had such serious light sensitivity that I could not keep it up – my body blistered from driving the car on a winter’s day. I live in Australia, in a coastal town – and it is almost summer – staying out of the sun is impossible.
  • 1 x Tinidazole 500mg twice a day – this I alternate on fortnightly cycles – starting up again next week.
  • Then about an hour later I take Byron White Formulas.  I take the detox –1 , A-Bab, and A-L formula.  Last time I tried the A-L formula I herxed badly… Today is the day I try it all again, starting at 2 drops a day. Each formula needs to be taken 30 minutes apart.  I drop 2 drops into a small amount of water and hold it in my mouth. I just took the A-L formula, and my head is starting to hurt – I am hoping it is just my fear.
  • Then in another hour I will take my tonic, made by my naturopath.  That contains:
  • Andrographis
  • Echinacea
  • Astrogralus
  • Cat’s Claw
  • Tumeric

I also take a variety of metagenics supplements:

  • Mushrooms 6
  • Fish oil
  • Inflavanoid intensive care
  • D3 Drops forte (liquid vitamin D)
  • And 2 probiotics.

I repeat this before I go to bed, but include two melatonin capsules.

  • Once a week I have an IV infusion of vitamin C. vitamin B and something else – I cannot pronounce it nor spell it, so I will get back to you on that one.
  • I have tramadol for any neurological flare-ups, and Naproxen 750mg for the joint ache.

Every day I have a sauna – I bought an infra-red sauna ( a dry sauna – I will write about this soon). I aim for at least 30 minutes, but prefer an hour. Sometimes to be extra vigilant I dry brush while I am in the sauna.

I have terrible joint pain, so I do not exercise, but I am hoping to devise a yin yoga sequence, that I can do in the sauna.  I will let you know how that turns out.

I also brew my own tea – with sarsparilla root, camomile, cat’s claw, elder flower, eye bright, cinnamon and rooibois.  I put the organic herbs into a pot and brew it for about ten minutes.

So if you are reading this, I assume you have lyme disease.  Tell me – have your eye lids drooped? I am sure mine are, and cannot believe that the aging process otherwise happens so fast.

I’d love to hear from you – what are you taking?  How are you feeling?  Are you supported?



This entry was posted in Lyme Disease, medicines, natural treatments, Uncategorized and tagged . Bookmark the permalink.

4 Responses to Day One

  1. lymelovely says:

    You are not alone, and I think we have the same LLMD (I use the byron white formulas too). I’ve been sick for 10 years at least, and there have been good times and bad. But I am once again worsening, and have decided to start a blog as a method to just talk about stuff, offer advice, and share information (which may be up today or later this week, because I’m herxing). I think it is good to know there are other people out there who “get it”. Having a support network of family and friends is so essential, but having people who empathize and not just sympathize is equally important. And if it helps, I did get better. I was in bed for 3 years, and then I got well enough to go to college- where I didn’t take care of myself, and the remainder of the lyme and confections that were still lurking took over. But I always knew that I would have more fighting to do, and I guess the time is now.

    • kirstinbokor says:

      I look forward to reading your blog. I am so sorry to hear that you are sick again. Hopefully this time hey? I live in AUstralia where we “don’t have lyme”, but luckily I have met quite a few people who also “don’t have Lyme” – it stops me feeling like I am going crazy.
      The funny thing about starting the blog, is that I make plans to do things that the well me could do in a second… I forget that my brain is foggy, and that I have poor attention to detail. But still, I think it might help give focus to the long days, something outside of my own body. Good luck, and I am going to see if you had the chance to load up your page.

  2. Huh. I live in the US. I had no idea that the medicines were used so far away! Oh, and I changed my blog name. I decided to jump ship and start up here (

    -LittleGreenDogs (used to be Lyme Lovely)

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