Adios, Cowden Protocol

Last weekend, I called my doctor and talked to her about quitting my six month long herbal protocol for chronic Lyme disease. She agreed that it was just too much for me, so, as of last Sunday, I am no longer doing the Cowden Condensed Protocol. While it feels lousy to quit, I did make it through 60 days, and I'm very proud of that, because those 60 days were not easy (there's the understatement of the year!). Together with my three-times-weekly Bicillin shots, I was just way too sick.

To someone who doesn't understand Lyme disease treatment, it's easy to assume that those of us with Lyme disease are sick because we are taking too many medicines. I've written several posts about the healing crisis that takes place during Lyme disease treatment--the reason you have to get worse to get better--and I'd like to point you here if you'd like to read more about the healing crisis, or herxheimer reaction. There's a lot of trial and error involved in treating chronic Lyme disease as everyone has a different immune system and different co-infections and viral activity along with Lyme.

Since I've been off the Cowden Protocol, I've been doing slightly better. My head feels clearer, although that is a very difficult thing to explain in writing. I still tire very easily and need to rest often, but I think (fingers crossed here!) that my energy may be slowly coming back. I've been working extra hard on detoxing my body, as most people with Lyme need extra help in this department. I've been chugging lemon water, soaking in epsom salt baths, and rebounding on my trampoline. (Not all at the same time, of course!)

Yawn! Lymeland is kind of boring right now!

Things have been a little slow here in Lymeland, but I've been plugging along. I've had some lovely visits with my horse and I've been pouring my heart out to my guitar. As hard as it was to make the decision to quit the Cowden Protocol, I'm proud of myself for listening to my body, and if need be, I will pursue the program again when I can concentrate on it as my only treatment.

Purple Flower

I've hit a rough patch in my treatment for Lyme disease. I don't want to do this anymore. My brain feels like it is underwater. Stringing words together into coherent sentences takes about ten times longer than normal. My head feels like it is in a vice grip, constantly being squeezed. I have flu-like aches worse than any flu imaginable. My hip is on fire and my knee feels like it is being knifed. I feel so stiff all over that I wonder if death got confused and rigor mortis has set in.

I hope with all of my heart that the increase in symptoms and pain means that I am just on the brink of healing. I don't like to write blog posts when I have tears streaming down my face from pain. I don't like writing publicly about the if-I-were-your-dog-you'd-have-me-euthanized kind of days, but the fact is, when you have Lyme disease, you have those kind of days--sometimes more often than you'd like to admit. I've begun the dance that I do best, that all of us do best really--the dance of trying to outrun myself when the going gets tough--anything to avoid facing the pain.

Like a cicada, I want to crawl out of my skin. But, as much as I--as we all--squirm and fight, I know deep down inside of me that it is exactly in these moments of wanting to crawl out of my skin that beautiful things can really begin to bloom. Sometimes you have to learn how to get out of your own way before true healing can begin.

Photo credit for this incredible macro:  "Fir0002/Flagstaffotos"

Every winter, for as long as I can remember, I would drive down the interstate and get the same gut-wrenching feeling as I looked at the miserable, bare trees whizzing by out the window. They represented all the things that I disliked most about winter--the hard times; the blustery, colorless, cold days with way too little sunlight. A few days ago, though, I was looking at the gloomy, leafless trees when a thought hit me: Those trees--the same ones that gave me a sickening, hopeless feeling year after year--were survivors. Yet, every year, they made it through the long, hard winter--the hard times--and triumphantly burst forth with color to celebrate their survival in the springtime.

I've watched for a few weeks now as my orchid has gotten ready to bloom again for the first time since I bought it earlier this year. Day after day, I've checked it, wondering impatiently if today would be the day that the brand new buds would finally open up. Yesterday, I looked at it and realized that in waiting for it to bloom, I was missing the beauty of the pregnant life in my plant. I was missing the beauty of all the love and care I've given my plant waiting and hoping for it to bloom again. Today, my orchid exploded forth in celebration of survival, rewarding me with the most perfect purple flower.

Writing brings me great healing and, already, in writing this post I've stumbled across an old lesson that I've already relearned and forgotten several times over. In words that I've written once and sadly have absolutely zero memory of writing, "Like a person thrashing to get out of a rip current, my instinct is to run straight back to where I was before I got sick. I want to be the person I used to be, and do the things I used to do again. But I can't. I can't run toward that, because I am on a different journey. Physically, I am weaker than I have ever been in my life. Mentally, I am stronger than I've ever been in my life. So, I'm learning to stop thrashing and step out of the way so my body can do its job." 



"Live your daily life in a way that you never lose yourself. When you are carried away with your worries, fears, cravings, anger, and desire, you run away from yourself and you lose yourself. The practice is always to go back to oneself.” Thich Nhat Hanh

Does Debbie Downer Try To Write Your Blog?

Often, I struggle to find the right words for what I want to say without coming across as writing the most depressing tangle of words imaginable. Lyme disease is not an easy topic to write about without bringing the room down! But, since my biggest hope for my blog is to help others understand what it is like living with chronic Lyme disease, I know I can never achieve that by writing from the perspective of a Debbie Downer, so I try not to let her write my blog posts!

Writing about a difficult subject like Lyme disease is no easy feat. Think of it as being a master chef. For those really tough blog posts that you just can't seem to publish, here's my recipe for success: toss in a gallon of hope, two teaspoons of pain, four heaping cups of gratitude, a sprinkle of tears and two or more cups of laughter to sweeten things up. Add in a few dozen "followers" and cook at 350 degrees until golden brown or until people start "liking" your blog posts.

If you add in too much "pain" and not enough "hope" or "gratitude," your blog post might come out a little too dry and/or burn around the edges. Don't give up; next time just add in a little extra laughter to sweeten it up. Now, let's get cooking and see if this "recipe" works!

(HOPE) On 11-11-11, interestingly enough, I had Bicillin shot number 11, which I took as a sign of good luck! I also began an herbal treatment called the Cowden Support Program for my Lyme disease. Today I am on day three of the six month Cowden Protocol. (LAUGHTER) Three days down, only 187 more to go!

(PAIN) My horse had to have her feet trimmed yesterday and I literally felt like the walking dead. It took every ounce of strength in my body to get to and through that appointment. I was so sick, I didn't even have the energy to hug my beloved horse--who was so excited to see me. In my world, there is no such thing as too exhausted to hug a horse. (HOPE) Yesterday was a tough day, but I know without a doubt that I will beat Lyme disease and one day I will tolt off triumphantly into the sunset with my little pony!

(GRATITUDE) After I got back from the barn, I had a two hour massage (Lyme disease does have a few perks!), which was completely heavenly. It helped pull me out of my funk for a few hours and gave my mind and body temporary shelter from the storm.

(PAIN) I'm pretty sure it's the Bicillin that's kicking my butt. The last few shots have made me feel progressively worse and my Herxing symptoms are piling up. The first three days of the Cowden Protocol are pretty gentle and are intended to help your body detox. Tomorrow--day four of the new protocol--I start five new herbs and also have to have shot number 12 in the evening (LAUGHTER)(er, in the butt, if you'd like to be more technical).

(LAUGHTER) Things are probably going to be pretty intense tomorrow and I told my friend that I am going to wear my Badass Lyme Warrior Woman outfit, complete with convenient Bicillin butt flaps!