Monday, May 16, 2011

Ctrl/Alt/Delete Me


Antibiotics have been my body's version of ctrl/alt/delete. They rebooted me and now I'm up and running again. Chances are, when I stop antibiotics, I will likely have to hit ctrl/alt/delete again with more antibiotics. Like many others, because my Lyme disease slipped undiagnosed from early-stage Lyme disease to late-stage Lyme disease, I may have to hit ctrl/alt/delete several times throughout my life to keep my Lyme symptoms at bay.

For many years, "antibiotics" was a dirty word to me. However, when I found out I had chronic Lyme disease, it stopped being a dirty word pretty damn quickly when I learned that it would pave the road back to good health. When it came down to choosing between having my life back versus never regaining my ability to function without the bone-crushing pain that had become my new normal, the choice was a no-brainer to begin the controversial treatment for late-stage Lyme disease—long-term antibiotics.

Many doctors won't treat chronic Lyme disease with long-term antibiotics because of the fear of creating antibiotic-resistant super-bugs. That's a very scary thought! However, when you have a disease that is so painful that you often can't walk without agonizing pain and are sometimes too weak to even talk--except when you are being treated with long-term antibiotics--the benefits far outweigh the risks. Quality of life must be taken into account.

For many of us with chronic Lyme disease, antibiotics are like a dam, holding back our symptoms. Long-term antibiotics are a frowned upon solution for our disease among mainstream doctors; however, no one has yet to come up with a different treatment. One "solution" even suggests that what we have doesn't actually exist! Most of us struggling with this disease know all too well the look of absolute disgust from medical professionals outside of our Lyme doctors--often times when our disease lands us in the ER--when they find out that we are "those" people--the lepers of modern-day society: those of us being treated with massive doses of antibiotics for a disease that's steeped in controversy.

When early-stage Lyme disease progresses into chronic Lyme disease, it is frequently (and I'd love to see statistics here) due to the fact that doctors failed to recognize and treat the disease in its early stage--causing the disease to progress into a painful disease that could have been prevented. The gross misdiagnosis and mishandling of Lyme disease--a disease that has been well-known for over 35 years--is absolutely mind-boggling.

Precious time is being wasted arguing over whether a chronic form of the disease exists, when that energy would  be better channeled into teaching doctors how to correctly identify this rapidly spreading disease--not only in its late-stage, but especially in its early stage when it can be treated and cured. If most cases were caught in time, when Lyme disease is generally easily treated with a short course of antibiotics, this would eradicate the problem of difficult-to-treat late-stage Lyme disease patients who can only function on open-ended antibiotics. Problem solved, right? Wrong.

Once I became totally debilitated by the symptoms of Lyme disease, my doctor, and six other doctors after him, couldn't recognize my symptoms for what they were--Lyme disease. How sure are you that your doctor could?

Misdiagnosis, long-term antibiotics, controversy, super-bugs....it's enough to make your head spin (and if you have Lyme disease, your head is probably already spinning!). I wish someone would hit ctrl/alt/delete on Lyme disease once and for all. But until that day comes, I keep swallowing down my handful of antibiotics, because those controversial little pills have taken away a monumental amount of the bone-crushing pain of this disease and have given me back my life, my ability to function, and the ability to take care of my two little boys.

5 comments:

  1. Excellent post, Alyson and very helpful for those who just do not understand the choices we must make...the antibiotics that can cause problems and damage..just to live a half way normal life and try to stop the damage the Lyme has done. I took abx for 3 yrs and now am on herbs. I know my treatmentjourney will be a life long one. I did have to go off when stomach troubles hit and after 4 months of on and off again limited doses...my symptoms of pain and neuropathy increased again and now I am back to limited energy, etc. So, we do what we can thinking of the present time...the now that we do have, while praying for healing and a cure for this awful disease. Thanks again, Alyson..you have stirred me once again with your insights and honesty.

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  2. I don't understand why we don't test people for Lyme at least annually like we do our dogs. What's the harm of screening? We don't wait until a woman is half-dead to give her a mammogram!

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  3. Great post Alyson. And Reta, that's a good question, but would annual screening with an inadequate test really change anything? I want a better test that definitively diagnoses Lyme. They can confirm Lyme in a dead person with an autopsy, why can't they figure out how to test for it on those of us still among the living?

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