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Cold and Calculating

Thursday, January 20, 2011

As the Lyme symptoms increase, I’m starting to have a shorter temper. I feel somewhat agitated all the time. Besides the pain, I’m having a frustrating problem that I was glad to see disappear. I’m dropping things, bumping into things, typing the wrong keys on the keyboard. So on top of the pain in all the different places, which would be enough to set a person on edge, I can’t quite do anything right…at least not the first two or three times I try.

This brings me to a conversation I had yesterday with another Lyme Disease combattant. (I’m not sure what to call us, patient seems so weak for the people I’ve met who are fighting to get back to a life that is more than 90% Lyme related.) When I told her I decided to try using the coil, she said she had considered doing something similar herself, but that she wasn’t that desperate yet.

I couldn’t quite verbalize it in the moment, but I didn’t choose this experiment out of desperation. I have read tons of literature about Lyme Disease. I’ve read people’s stories, medical reviews, alternative medicine treatments and on and on. From what I could tell, antibiotics don’t cure a person of Lyme, at least not in the kind of case I have with multiple infections that proliferated for years before I got treated. Antibiotics can make a person a lot better. A LOT BETTER. They can give a person a shot a getting her life together for a while. There are two major drawbacks: 1. Side effects. 2. When one stops the antibiotics for a while, the symptoms come back.

I’ve read a lot from the medical camp that says antibiotics don’t work precisely because of problem 2. Their collective answer is palliative care (not end of life care, but trying to diminish the symptoms without addressing the cause). They are wrong to thing antibiotics don’t work. They just don’t provide a complete solution. Not using them allows the Lyme bacteria to grow and grow and destroy a person’s body slowly and progressively.

I was doing so well at the end of November. Not too much pain. Not too much fatigue. Mental clarity. Emotional moderation. What I was taking didn’t help with my joints, and I knew that at some point I would have to switch drugs to kill the Lyme in my joints. The side effects were starting to bother me, mostly that I couldn’t sleep on nights when I took Rocephin and that my digestive tract was off-kilter. Those last two weeks, I didn’t want to take it because of some feeling inside me that had no obvious rational basis.

When I switched to a different antibiotic, I could feel some improvements slipping through my fingers even as my joints initially got worse than started to calm down. But my stomach and intestines just could not tolerate the Doryx and the yeast problem was getting totally out of control.

In that light, it was a cold, calculated decision to try the coil machine, despite how much less help I could get with the process, despite how fringe it seems. I’ve reached a point where I don’t want to get incrementally better while I manage a host of problems that are not as bad as being bedridden but that continue to significantly interfere with my life. If the coil doesn’t work, I’ll have to go back to the antibiotic hamster wheel, but I haven’t read of anyone going back.

So here I am, on the verge of this big adventure, trying to clean up what I believe is a side effect of the Rocephin, unable to walk away from the antibiotic drama yet. Not desperate, not exactly, but impatient, irritated and hopeful.

Disclaimer

One comment

  1. Rose – I am so glad you are documenting this journey. It is almost one year ago today I started the coil, and I was reviewing my symptoms. It has been a lot of ups and downs, but I have continued to go in the right direction, with no antibiotics that entire time. As a doctor myself, I was skeptical, but I knew antibiotics wouldn’t cure chronic lyme and I was ready to take the risk. I am so happy I did. I’m not completely better, but I am 90% there. It’s a long and hard road but I’m here for you, whatever you need. You made the right decision – keep going! Joan



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