writer, warrior, whack-a-doodle

Dingo Bells

Dingo Bells

December 8, 2014
Posted in: Lyme Disease, Mastheads | Reading Time: 4 minutes

dingo bells

Long time readers will recognize this month's masthead from December 2009. I took a short cut and repeated one of my favorite cracker and criminal holiday adventures. As usual, Lyme and Co-infections company has left little in the bank for creativity. But the good news is, I'm getting closer to recovery. I swear internet. With the exception of some occasional back pain, all my joint pain is gone and what I'm left fighting are neurological and cognitive symptoms, along with enormous fatigue. Some days even climbing a flight of stairs will knock the wind out of me.

And just when one would think as recovery gets near, that drug protocol ramps down, it's very much the opposite. My regimen has become so complicated, I need a printed calendar and iPhone to monitor it daily now. This month, I rotate through 11, that's right, ELEVEN, different medications. Some I take daily; some I take 9 days on, 5 days off; some I take 5 days on, 11 days off; some I take 3 days on, 11 days off, and one I take twice weekly.  Included with that round-up are more IV antibiotics every other week.   It seems unreal to a person not familiar with Lyme but the more research done on the Lyme disease complex (Lyme + co-infections) the more that aggressive individual treatment protocols make sense. Through reading the tons of books and literature done on Lyme disease, I've learned that the last phase of recovery is often the most aggressive and drug rotating protocol. It's comforting to know there are recovered patients who've gone through a program as nutty as this. Still, it's no less embarrassing to be picking up 9 medications at the pharmacy in front of a line of 8 people with wide eyes wondering if they can catch whatever it is I have.

If you're wondering why so many drugs, well, for many reasons.   For one, rotating gives my very beat up GI system a break from the meds that are especially harsh on the system. Last month my treatment protocol left me unable to eat and unable to get all my supplements down daily, which are an essential part of healing. Already my tests results showed dips in tons of vitamins and protein. So it was time to mix it up so I could eat again and get all the supplements I'm missing. Another reason, at this stage, Lyme is really weakened and co-infections are now active, so many of the drugs are targeting the co-infections. Though Lyme is weakened, it's still very good at hiding in deep tissues to avoid antibiotics. Pulsing the Lyme meds at this point when it's been weakened, gives the last of the Borrelia a chance to come out of hiding, and grow a bit then hit it hard during it's growth stage when it's most vulnerable.

I think about all the ways I used to challenge myself pre-Lyme: how fast can I ride my bike, how long can I run with my dogs, how quickly I could climb a mountain. Now I challenge myself with how many pills I can swallow in a day. Who says Lyme disease can't be fun?

But seriously, looking back at the last two holiday seasons, the pain levels then were so much higher, unbearable at times, and I couldn't even leave the house. This year, we actually decorated and have been to town once on a small shopping trip. I'm very happy for the improvements and grateful to the entire medical team and friends and family close to me who support me.

Have a happy, healthy, holiday season readers!


In our house, Naughty always gets plenty of presents! 


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9 comments on “Dingo Bells”

  1. I love the masthead! And I'm so pleased to hear that you're moving into what looks to be the final phases of kicking Lyme's butt. Sending wishes for a peaceful holiday season!

  2. No need for a new header - that one is beautiful!!! So good to hear things are moving in the right direction. You have certainly earned a happy holiday season - here's hoping 2015 is a wonderful and healthy year for you.

  3. Finally beating this thing would be the best Christmas present ever!! If I could ask for that, for you to be cured, and for me to receive no other gifts that's what I would ask for. I'm so glad the light at the end of the tunnel is visible and I'm so glad your pain is better. Hang in there! You're a fighter and you will beat this!

  4. Loved your Christmas card at the top - very cool. Won't it be wonderful this time next year when you are off all meds? It will be here before you know it.

    I'd be interested in your recommended readings on Lyme. Hearing about your extensive regimen reminds me that my knowledge of this disease is decades old and quite limited.

    Hope you have a great Christmas surrounded by those you love.


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