The Layers of Lyme

Mr. Wild Dingo sat in the kitchen watching me prepare dinner. He claimed he changed his routine from working in the office to the kitchen so he could spend more time with me. Knowing his passion for the economy of motion, I suspected it was easier for him to stay close to me rather than jump up every 10 minutes whenever I called him to lift a pot or help me up off the floor. I had a handful of those days when he literally had to lift me up because the pain was too severe.

He watched me closely as I chopped vegetables. "You lost almost a decade of your life to this disease. The best years of your life," he said, as if he just grasped the impact this has had on me, him and us.

Mr. Wild Dingo doesn't say much about my illness. He's not one to coddle or inquire about my daily aches. His statement took me by surprise. I mean, like, duh, right? I guess these sudden realizations are slower to come by if you aren't living the experience.  It’s not like I’ve never considered losing that much of my life. I think about it often. I’ve lost the ability to work, be active, socialize, enjoy music, think, read, write, and sometimes my ability to drive. I’ve also lost friendships. I even lost my doctor, who retired this summer.  But it doesn’t do any good to dwell on the loss. After all, there are thousands of Lymies who’ve lost many more years to this disease than I have.

With every challenge and every change there's opportunity.  I found a new team of medical and naturopathic doctors in one practice to continue my treatment for Lyme and I made huge gains, so much so, I was able to attend Mr. Wild Dingo’s 30th reunion at the Naval Academy in Maryland a few weeks ago and even go to a friend’s birthday party.

Don't be a schnook! It's not how you feel, it's how you look!

They may as well call Lyme disease the “You Look Marvelous” disease because it’s hard to tell by looking at me in the photo above that I’m still very sick. In fact, what you don’t see in this shot is a catheter in my left arm for the daily IV antibiotic therapy. Tick Borne Disease is truly an invisible disease.

Those gains I made last month came when I started  medications and herbs targeted for Babesia. The improvement was almost digital. Within 3 days of starting it,  80% of my mobility returned and I was back on my yoga mat. I’m still wobbly and have poor balance, but Mr. Wild Dingo can return to working in the office again, worry-free, while I make dinner.

Though the joint pain improved, I continued to struggle with plenty of neurological issues, cognitive symptoms and daily migraines, so daily intramuscular shots of Rocephin were added. They helped a lot but it wasn’t quite the kick I needed. After 4 weeks of daily shots in the butt, there were too many bruises and no more spaces to put a shot, the doctors moved me to twice daily IV Rocephin infusions for the next four weeks.

This shit just got real.

I wasn't too crazy about infusing myself twice per day. In fact, it scared the crap out of me. But the benefits outweighed the risk and inconvenience of the ball-n-chain inserted into my arm.  And my daily headaches decreased in severity.

Some say that you shouldn’t let Lyme disease run your life. It’s kind of difficult to live by that when you have this many drugs and supplements to take daily, not to mention the weekly visits to the doctor for a new peripheral line.  It takes me 4 hours each morning to get my meds down and when on IV, another hour added to that. The nausea from the cocktails make it hard to eat and hard to swallow any pills. I always have a 20% chance of barfing each day so the green bucket stays close at hand. I have to plan any event, like shopping or spending time with a friend, around that cookie-tossing risk, and make changes to lower the risk.

It also takes me quite some time to turn all of these bottles above into:

A one day supply of meds and supplements neatly packaged into three pill boxes. Most mornings I feel like I had just done this chore 5 minutes ago. With Lyme, time moves quickly while you feel like you're standing still.

Over the last 18 months I’ve been on 10 different antibiotics, two anti-parasites, four other “anti” drugs to counter act the side effects of the antibiotics, not to mention the herbal anti-microbrials,  immune support and of course, probiotics.

If you're wondering how I manage to keep track of all these drugs and supplements, never fear: I have an organized spreadsheet that spells out each med and dose and time of day to take it. I save all my spreadsheets by month to track which meds I've taken in the past. I also take inventory once per month to make sure I have enough of what I need on hand to get me through a month.

So you see, while it's a well-meaning sentiment to not let Lyme run your life, it's also unrealistic. Instead, I try to find ways to do small things that make me forget about it for short periods of time.

The Babesia meds and the Rocephin are what got me up off the sofa and back in front of my computer, in front of my camera, to a friend’s birthday and to Mr. Wild Dingo’s reunion. You may be thinking, “why so many drugs” or “why not just go to the hardest hitting drug?” It’s not such an easy answer. Each medication I took, whether it had a big effect or no effect at all, gave us valuable information. There are three forms of Lyme and different antibiotics are used for each form. It’s necessary to try them all because there’s no way of knowing which form is causing the most damage.

In addition, some of the harder hitting drugs are quite dangerous. I know of at least one person diagnosed with Lyme who needed no more than 7 months of Doxycycline. So there’s no point in giving a hard hitting, risky drug to someone who doesn’t need it. From what I read, unless the patient is bed-ridden and immobile, most doctors start with the least risky medications.

Recovering from Lyme and Tick disease is very much an onion peeling exercise. Each round of medication will expose a new layer of your own Lyme onion. Sometimes a set of meds will bring several steps forward and feel like full recovery is just mere steps away. But as the weeks pass, your recovery starts to slip, which only gives you more clues as to what other infections may be brewing under the cloak of Borrelia Burgdorferi. While it was obvious from the beginning that I also had Bartonella, the specific Babesia symptoms never showed up until 1 year into treatment for Lyme. By then, enough of the Lyme was killed off to expose the Babesia. You can’t know what a shock it was to me to suddenly have my mobility back from 2 simple Babesia-targeted meds. So far, that mobility gain is holding.

Next week, I start a new phase of treatment, new meds to target the cyst form of Lyme and simultaneously whack out more of the Babesia.  From what I read on those meds, it won’t be pretty so I'm waiting until after our anniversary celebration this weekend to start them.  Because, for once it would be nice to feel even a little bit marvelous for a few days. Well, relatively speaking.