The Layers of Lyme

October 23, 2014

The Layers of Lyme

October 23, 2014

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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.

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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.

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This shit just got real.

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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:

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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.

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8 comments on “The Layers of Lyme”

  1. It's generous of you to share your daily treatment regimen. It sounds like you have a wonderful medical team. Undoubtedly your information will inspire others to rethink their own treatment or doctor.

    I don't even know you, but am so empathetic that joyful will be how I feel when you recover. I had chronic Lyme 23 years ago and have since dealt with other serious illnesses (cancer, for one). Considering I survived, I can say (and often do) that NOTHING was as debilitating and frightening as Lyme Disease.

    Perhaps it's because of dealing with health problems, perhaps I would have come to this conclusion anyway........ I find the greatest pleasure in the simplest of things....... Enjoying family, some friends, but mostly walking with my husband and our dogs in the woods, on a beautiful Fall day like today. I hope you are soon feeling good enough to do the same on a regular basis.

    Kim Amburgey

    (pics probably won't come out, thought you might enjoy Fall foliage)

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    (apology if you received this twice, had some technical difficulties:)

  2. Wow - your life truly IS run by your illness - and sadly so. We are all still here as your friends but often don't know the words to say that would carry any real help for you. Please know that we think of you often and hope for you to be well again. You are in our prayers.

    Hugs, Kathie and The OP Pack

  3. I remember climbing Mt. Hamilton with you, Mr. Wild Dingo, and a few others. One day we will do that again. Hugs.

  4. I had no idea having Lyme was so complicated. I have a dear friend here who had it years ago and still deals with issues from it. She never talks about it, so I still don't know much about the disease. Except that I live smack in the center of Deer-tick HQ, and I read warnings about how the tick population has exploded here over the past couple years and they expect Lyme to become an epidemic in RI & CT. The dogs get their meds monthly & I rarely walk them in the woods- last time I took them walking on a bike path I had to pull 5 or 6 ticks off Moo. its a shame,as this area has so many wonderful places to walk & hike, but I really do fear the ticks. Now, after reading what YOU go thru, that fear just tripled! Keeping you im my prayers, Julie, hope the meds continue to help you regain your health.

  5. I'm so, so sorry you've had to go through all of this. I'm glad some progress has been made and I hope you start feeling much, much better after this next treatment!! I had heard about Lyme hiding the Babesia before, but I don't really know all that much about it. I'm still keeping you in my thoughts and prayers.

  6. I did the heparin lock thing about 30 years ago. It kept me out of the hospital. I think of you often. Skritches to The Cracker and The Criminal.

    -Lisa

  7. This is a sobering post. I hope that this is a good day, and that there will be many more in the (near) future. When I struggled with being incapacitated by endometriosis, my only motto was that I wouldn't let myself identify myself by what disease I had. Sure, Lyme can run your days while you're trying to heal. But, it sounds like you've kept your core spirit (you haven't "become a Lymie, and that's all"). Way to go! Thinking of you...

  8. Your post made me cry! In the past 3 years my life has crumbled. I was a banker... Ended up in ICU with an inoperable brain mass on the brainstem causing hydrocephalus, I had brain surgery to reduce the pressure in my brain Feb 20, 2013 went back to work and was fired 6 weeks later. Since then (June 2013) the financial fears, loss of medical coverage and continued medical questions have had me spinning. I have been diagnosed with fibromyalgia, intersticial cystitis, chronic fatigue, hypothyroid, etc...I tested positive for Lyme antibodies but my immune markers are not high enough to be an "active" infection. I've been denied appointments through departments that cover lyme (through the UC system my insurance covers) so I'm forced to pay out of pocket for help and I honestly don't know how I will make it. I'm currently on Zithromax, plaquenal & Omnicef... As well as probiotics, stress buster and soon to add something to help detox... 1 month into treatment and dealing with brain fog, vision issues, nausea, headache, anxiety, fear that is crippling ...the list goes on!!!
    Everything I'm feeling at least feels better knowing in not alone. God bless you and thank you for posting this so I know it's not just me or all in my head!
    Andrea

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