My Lyme Disease Is Not The IDSA Lyme Disease
My Lyme Disease Is Not The IDSA Lyme Disease
Planet Thrive couldn’t have said it any better, “they still have – their voices and their stories.” The efforts of the Chicago Tribune in its story “Chronic Lyme Disease: A Dubious Diagnosis” to squash the spirits of those that suffer from Chronic Lyme Disease has only increased their determination to fight. The Tribune’s measures in using newscast media to further promote the opinion that Chronic Lyme Disease does not exist only strengthened the unity of those that continue to suffer. Ashley Van Tol of Lymenaide, was quoted in that story, began with hers first and others continue to follow.
Within the six weeks of the initial treatment of 10 days, I was completely disabled and bedridden. There was no mistaking when my symptoms all began because I had the tick attached to me. My doctors used the standard “rubber stamp” “one size fits all” treatment, as outlined by the CDC guidelines, which the IDSA says is sufficient. It took me two years to recover not 10 or 28 days, I lost my job and even part-time jobs that I tried to do because I was too stubborn to give up while I was undergoing treatment, that is, once I began having good and bad days and no longer bedridden. It stole two years of my life as I knew it and later another year. My friend that was in his late sixties helped to take care of me, while my husband was at work. I was going to therapy and there was a 93 year-old woman that had to assist me, too many times, to just get around.
I ask: Would you be able to control your feelings when your life has changed drastically? Would you be able to remain dignified when you became so ill that you had to be bathed and clothed by someone because you could not do it yourself? Would you be able not to be angry when you weren’t able to see anything at all as soon as it became dark for several months? Would you be happy that you became so ill that you were unable to control your motor functions? Would you be able to enjoy life if everything that touched your body burned like it was on fire? Would you not be embarrassed when you could not control your bladder or bowel movements? Would you be happy if one day you awoke only to find that you could not hear a thing and then have this loss of hearing continue for months?
Or, would you be able to remain calm when you are so ill that you can’t walk? Would you be able to remain unruffled when your friends used to call you “the walking encyclopedia” and now you cannot even iterate a full and complete thought? When you were known for your great speeches and all you can do is slur or stutter? (President George W. Bush is a good example of this.) When you were known for your perfect audits and now you are lucky if you remember how to add two and two? When you used to work 45 hours or more a week and still be full of energy and now you are lucky if you can stay awake for an hour?
There are many more examples including how I was afraid to eat in public when my friends were taking me out for fresh air and a nice lunch because my hands shook so much that I often couldn’t even get the spoon to my mouth or hiding my arms deep in my pockets when I could bear to wear clothes so that people wouldn’t notice the uncontrollable shaking—I often think of Michael J. Fox when I recall that practice. Or, having to be assisted to just use the restroom or take a bath? And, worst of all, would you want to continue to go on living if every breath you took felt like an electric current coursed throughout your entire body?
I prided myself on my recovery for years then after a simple and routine surgery, it took me weeks to recover rather than the three to four days as I was told. Once I went through the horrible nightmare battling Lyme Disease, I was very careful and vigilant in my efforts to prevent another tick bite. However, the reason for my not recovering was Babesiosis and then further tests also showed Lyme and Bartonella. Once again, I had to go the long-term treatment, after a year, I once again am better than ever. So, I know that treatment according to my individual needs did indeed help me and not the treatment that the IDSA states are sufficient.
My final note to all of you is that most doctors follow the stated guidelines used by the CDC which are the ones that the IDSA has outlined for them. After reading several of these stories, are you confidant that you will be treated appropriately?
Read More Responses
Journalism or Sensationalism? Compilation of Responses Lyme Patients/advocates to Tribune http://bit.ly/hL4ala
NOTE: And the things that I didn’t mention earlier, tingling of my head, hands and feet, the incessant eye twitching, being so weak that I couldn’t hold my body up, jolting nerve pain, going from knowing everyone’s name and number in my directory to not being able to remember what someone said to me a couple minutes ago, complete loss of vision, severe chest pains, lack of taste, drenching nightsweats, overwhelming fatigue with insomnia at the same time, being cold even when it was over 85 degrees outside, wearing a scarf on my head because I had bald spots that would burn if left uncovered, being unable to comb what hair I had left because it hurt too much, and the unending nausea and blackouts.
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