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I visited my LLMD this week and I thought you guys would be interested to hear how it went. So, here’s the deal – My LLMD is following protocols of Dr. Fry in regards to the relationship between diet and the lyme bacteria/biofilms. The low-fat diet my LLMD has me on eliminates biofilms in the body. With those gone the antibiotics begin to finally be able to kill off the bacteria hiding and my immune system is able to begin to support itself again. My LLMD believes (and has seen this proven true with other patients) that I can now stop taking antibiotics and continue to see improvement and eventual health by continuing to strictly follow the diet, detox and support my body with a few well-chosen supplements!
Starting Monday I’m stopping antibiotics after 4 years and I’ll see how things go for the next 4-6 weeks.
I think this is fantastic, don’t misunderstand me! I’m just still in shock and still trying to make sense of it all. A year ago I was researching ports vs. piccs and now I’m researching the nutrional content of my foods. It’s a major change of mentality!
So… this is all super exciting, without question, but scary too because the idea of another relapse scares the crap out of me. I’ve done that and I don’t ever want to find myself in that position again :-/
Wish me luck, say a small prayer and join me in throwing as much positive energy and thoughts into the universe about this as you can spare!
All my love as I continue my journey to health and healing.
Yesterday my parents and I drove out of town to see my LLMD. It’s not too far away, but it’s not close by like my other doctor. We usually stop to stretch our legs along the way. This time we stopped at a lakeside marina with a small park looking out over the water. It was beautiful. Blissful. Calming. Centering. I could go on… But what I loved most was the swings. One of my rules in life is to never pass up a chance to swing. Just don’t. Take a moment to fly through the air, feel the wind on your face, give in to a giggle and you won’t regret it. I promise!
Well folks, my face is still twitching away. However, thankfully we seem to have tracked the problem down. First my physical therapist drew attention to my nervous system, then my local MD traced it to an adverse medication reaction which was the root cause of the nervous system being in the state it’s in, and then finally an emergency phone consult with my LLMD who (I’m grateful) agreed with the theories and decided on a plan of action. I love it when my practioners all work together. This sense of synergy really benefits the patient!
So this week I’m working on getting these symptoms calmed down. I really couldn’t continue to function in the state I was/am in; it’s just too much. I felt that I was continuously holding back the floodgates. Any time I relax my muscles, especially those in my face, the spasms start. Every. Single. Time. I’m so tense right now it’s ridiculous.
When my muscles start going it starts in my eyes. They begin to flutter. Then my right eyebrow and surrounding muscles start. It moves next to my right eye, then down to my lips. Usually last to hit is my nose. It twitches back and forth and every time it does all I can think of is Bewitched!
Wouldn’t it be fantastic if I could make some magic happen in this scenario?
I’ve always wanted to be able to twitch my nose like Samantha and clean up a mess, or find a lost object. Maybe I’d magically fill my pill containers or change the flavor of my Mepron. The list of things a girl with Lyme could do if she could “twitch” her nose with magic is endless!
The mind boggles.
I could make the battery on my kindle last longer, bring something I’d forgotten in another room right to my lap, turn off the lights off when they trigger my headaches, make my favorite movie play on tv, have the dishes clean themselves, or simply just twitch up a cup of tea when I’m feeling like a cuppa.
Endless, the list is endless I tell you!
What would you do if you could magically “twitch” your nose Samantha style?
My mom and I were discussing this in the car today. Suddenly we realized… if I could “twitch”, then I could call up Dr. Bombay!
Remember how to do it? A witch simply had to call out:
“Calling Dr. Bombay! Calling Dr. Bombay, Emergency! Come right away!”
And magically Dr. Bombay would appear in a cloud of smoke right then and there. He’d be dressed in an outrageous outfit and be understandably miffed from being dragged away from whatever it was he had been doing at the time – usually his nurse.
But then he’d pull out the professional stoppers and get right down to business. The quicker the better, so he could get back to that nurse.
He’d listen to the problem and pull out some magical, mysterious witchdoctor examination tool. Wasn’t there a keyboard he played that did something?
Before long he’d know exactly what the problem was and how to fix it! I think my chances to be cured would be much improved with Dr. Bombay! He’s got magic on his side. Centuries and centuries of wisdom. And a small flair for the dramatic.
I’d much rather have Dr. Bombay consult on my case than Dr. House (as much as I loved him) any day!
Only it was never really that simple… more often than not he required some hard to find ingredients to cure the illness. There was a sleazy witch apothecary who sold potions and ingredients. Or there was always the chance that somebody would need to go back to the 16th century or something in order to get an ingredient like the tail feather of a dodo bird.
Somebody would need to go off in search of the ingredients while the sick person waited at home, and hopefully didn’t get worse. Dr. Bombay would disappear, only to be called back when all the ingredients were gotten.
My mom has volunteered to go off on the quest in search of the hard to find, magical ingredients to cure me! She’s prepared to battle a dodo bird for it’s tail feather or blend into the king’s court in the 16th century.
What a mom!
Now I just need to get the ball rolling… next time the muscle spasms come on I’m hoping not just for a twitch, but I want a “twitch”.
And you better bet I’ll be thinking, “Calling Dr. Bombay! Calling Dr. Bombay, Emergency! Come right away!” .
All my love,
I have a moment, a feeling frozen in my mind. I doubt that it will ever go away. It doesn’t haunt me. It doesn’t affect my daily life. But sometimes a memory will be triggered by the present, and I need to accept that it was part of my journey in order to move on.
I was ten or eleven years old. I’m sitting in a chair in my parent’s bedroom with tears streaming down my face. I remember vividly that I was crying because I was shaking with internal tremors that nobody could see or feel. All I wanted was for somebody to see what I felt. I wanted somebody to tell me that they knew I wasn’t lying or faking to get out of school or to gain attention. At this point I hadn’t been sick for very long (in retrospect) but it felt like it had been forever. I was miserable. I just wanted a doctor to believe me, to help me, to make it stop. Why couldn’t they see it? WHY? Tears spilled from my eyes often during those hard years.
My parents believed me every step of the way. They fought for me. I’m lucky and honest to God, I’m blessed to have them as my parents. They never gave up, and they taught me to fight for myself, my health and my hope.
Nine years later I still have those internal tremors. But as time has passed they’ve progressed. Now I have muscle tremors and spasms that are completely visible. Most days they’re minimal. I can often hide them, or hold my muscles so that they are less noticeable. Ask my best friends or my brothers if they’ve ever seen what I’m talking about and they’ll say “No”. I simply unconsciously hide most of my symptoms around people. I can’t help it.
Yesterday one of my practioners was working with my face and head. Not even five minutes later my eyes, eyebrows, nose, lips, and cheeks were in spasm. They began twitching uncontrollably for the next hour and a half. Soon my arms, shoulders and legs were jerking. The more I tried the relax my face they would act up again. I’d take a deep breath, release, and then a moment later they were back. It’s an odd feeling of vulnerability. I wasn’t afraid to let them happen yesterday, but they were exhausting. I left the appointment completely done-in.
As I lay on the table I was struck with that memory. The odd juxtaposition of my feelings nine years ago with my habit of hiding these tremors today occurred to me. Now I have that vindication. Doctors and those providing care on my medical team do acknowledge that these tremors exist. They are no longer in question. These people believed me and now they can see it with their own eyes. It’s been proven that I was never the young faker trying to gain attention or get out of school. I was a girl who needed help that I didn’t receive until it was long overdue.
So in that light not only do I have feelings of vindication now, but I have a sense of exasperation. I simply shouldn’t have had to wait nine years.
Now my sense of fairness to my younger self is troubling me.
Do I want people to see these tremors? Do I acknowledge her wish? Or do I continue to allow myself to put up a front, a different face now in the present? I don’t know. I almost hesitated to write this post because I don’t know what my final feelings are about this. It’s an internal question that I’m going to have to work out for myself. So if one day you see me and notice these muscle spasms, know that either I’m too ill to control them or, more hopefully, I’m acknowledging that little girl inside me who only wanted to be heard.
Those are the words that my LLMD said to me last week. “We’re finally winning.” I can’t even begin to describe what hearing that was like. I heard the words; I smiled. But those fantastic words didn’t sink in right away. I felt… like I was staring down a beautiful cliff, unsure of what I was doing there and what I should be feeling – awe from the spectacular view or fear from being so close to the edge.
I was talking to another Lyme friend of mine recently about how hard it is to trust those words I was told. Here’s a snippet of what I said, “I haven’t ever lost hope of recovery, but somehow this feels different now. It’s not sometime in the future. It’s starting right now. I want to accept that gratefully, but I’m still protecting myself from the possibility I’ll get worse again. It’s a fine line…”.
Like I said, I have never lost hope. I believe that we will all find days of health ahead of us as we recover from these life-altering infections. We will.
However in order to function each day, in order to allow myself to put one step in front of the other, I do have a wall of protection that I keep up. Maybe that’s a good thing, maybe not. I don’t know. But I know that it’s there.
I think it was the day after my appointment that they finally began to sink in. I gleefully told my acupuncturist about it the next morning, and I remember the joy in the conversation. I could feel my face light up. That was the first moment it felt real. I hope I never forget that feeling!
Now I think I’ve accepted the fact that I am actually improving. I’m not feeling much of a change in my symptoms, but I can only hope that soon my body will catch up and give me a much-needed break!
I haven’t blogged much this year. I simply haven’t felt up to it. Computers often make me sick, and my symptoms have truly overwhelmed me in the past few months. However, I’m thrilled to say that this week I’ve felt better. I’ve had more energy, and my mental clarity has felt just a bit sharper. I’m even happier that I’m feeling better today of all days.
Today happens to be my birthday.
I think that feeling the way I do today will be one of the best gifts I’ll receive!
Today I turn 20. Where all the years have gone, I have no idea. I wish I could have a few of them back! I feel older than my age, not surprisingly. But I’m so glad that in reality I am just 20 and not 83 – like I feel many days. My wish this year is that I’ll finally be feeling well enough to live a little. I have dreams and adventures, things to do and places to see! I’d like to start crossing things off my bucket list! If today is an example of the year ahead… I think my wish will be coming true : )
Another phrase my LLMD said to me in my appointment has stuck with me also. She said, “You’re doing amazing.” Imagine that… I’m doing amazing! I think she was as surprised as I am.
I’d like to celebrate my new year each amazing moment at a time. I’m going to savor them.
Peace and healing,
Another Lyme friend of mine shared this photo on Facebook, and I immediately sat back in my chair as a wave of understanding rolled over me. Every sane human being is searching at one point or another in their lives for something that speaks to their soul as a purpose. There’s such a deep meaning to that word. Purpose. It’s daunting. More than that though – it’s hopeful.
I feel that those of us who are chronically ill must intrinsically look to the concept of purpose differently than others at times.
I don’t know about you, but my purpose at this point in my life, in my own unique journey, is to fight for a healthier me. I wake up every day with the intention to help my body win this fight. Medications, nutritious foods, healing energy, positive affirmations and laughter are all tools in my arsenal.
One day my purpose will change. I will be a healthier me and I’ll be ready to take the next step in my life. But today? I did have a rough morning. As I place my hand over my heart I feel my hopes and dreams surging through my body. I feel the life I have in me. I feel the purpose. I am the purpose. And I’m not giving up.
peace & healing,
I’m working on finishing the update from the appointment with my new LLMD and it’s taking me a lot longer to finish than I had expected. It’s slow going as I’m patient with myself, my memory, and my symptoms.
In the meantime I have two things to share with you. First, this lovely photo I found this morning. I have always loved this poem! It was the inspiration I needed and just the reminder I wanted today; I hope you enjoy it too!
Secondly, I wrote a new piece this week that I’d like to share with you. I like to think of myself as an aspiring writer, but with Lyme I feel that most of my creative writing has gone on the back-burner. I haven’t written a thing resembling poetry, stories, or anything remotely creative in ages. But these words just poured out of me in a way that I was craving. I’d like to invite you to read this.
I’m calling it my break-up letter with Lyme.