As of last week, I am officially off of prescription antibiotics. My symptoms have been very minimal for the past 6 months or so and my doctor and I decided it was time to try to stop antibiotic therapy. There really is no set time to stop antibiotic therapy when you have Late-Stage Lyme Disease, since there is no test to confirm that you are finished. There are no guidelines for appropriate timing of cessation of antibiotic therapy, but Dr. Richard Horowitz, an east coast lyme-literate physician, suggests in his book Why Can’t I Get Better? Solving The Mystery of Lyme and Chronic Disease ending antibiotic therapy approximately two months after symptoms have completely stopped. If you haven’t read that book, go buy it here: http://www.amazon.com/Better-Solving-Mystery-Chronic-Disease/dp/1250019400
Dr. Joseph Burrascano, another east coast lyme-literate physician says the following in The International Lyme and Associated Diseases Society Evidence-based guidelines for the management of Lyme disease:
“The decision to discontinue antibiotics should be made in consultation with the patient and should take into account such factors as the frequency and duration of persistent infection, frequency of recurrence, probability of refractory Lyme disease, gains with antibiotics, the importance to the patient of discontinuing antibiotics and potential for careful follow-up.The ideal approach would be to continue therapy for Lyme disease until the Lyme spirochete is eradicated. Unfortunately there is currently no test available to determine this point . Therefore, the clinician must rely on the factors outlined above to decide on the length of antibiotic therapy for chronic Lyme disease.”
If you have not read The International Lyme and Associated Diseases Society Evidence-based guidelines for the management of Lyme disease, I suggest you do that here:
Have I been symptom free for two months? Maybe. I say maybe, because I haven’t had any of the “classic” Lyme symptoms that I used to have regularly in about 6 months, such as: joint pain, muscle pain, heart palpitations, dizziness, memory loss, persistent headaches, brain fog, fatigue, or stinging nerve pain with numbness and tingling. However, something than remains is occasional flaring in my feet (described here), ringing in my ears, and exhaustion from activity. Now, when I say exhaustion from activity, I don’t mean exhaustion from walking around the block, which is how it used to be. I mean I still have to be careful with how much activity I do, because it will sometimes (not always) make me have to sleep on the couch for the rest of the day if I’m not careful. My body has been through a lot, and honestly, I think I am probably more active than the average American today. So, sure, I get tired after I ride my mountain bike for two hours, but so do a lot of people. I’m not saying this in a bragging way. I’m saying this to put things in perspective. I may never be able to be the athlete that I was before, but I am grateful for what I am capable of now. I know there are so many people out there who would love to be as mobile as I am, so no complaints here.
What about my remaining symptoms? Well, honestly, I don’t know if those remaining symptoms are Lyme related or not. It’s hard to say. There is a chance that they are autoimmune related. It makes total sense to me that autoimmunity could be triggered by chronic infection. It could also be remaining infection, but there’s only one way to know and that is to try to stop antibiotic therapy and see if my body can get things under control on it’s own. It’s a scary proposition, since I DO NOT want to be in the condition that I was in three years ago, but my doctor is not far away and if I had to start therapy again, I would have to find a way (my funding for treatment is now gone). My outlook is pretty positive, however. I feel confident that my body is getting stronger and stronger and that I can manage to remain in remission on my own with a clean diet, plenty of sleep and rest, holding a low stress lifestyle, and easing myself back in to exercise and adventure. Am I scared? HECK YES! But, I also feel ready. If you want to send a prayer of strength and hope out there for me, it would be appreciated!
It feels incredible to be in the woods playing again. My hope is that those of you still suffering can find your way to fun again. Be patient. Be open. Be dedicated to your recovery. Be hopeful. Let go of what you can.
Thank you to all of you who have supported me through this journey. I am forever grateful.
So much love,