lymeoutlyndsey

My journey through Lyme Disease- Healing my body and mind.

The End of an Era

on March 2, 2015

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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 [25]. 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:

http://www.ilads.org/lyme/ILADS_Guidelines.pdf

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,

Lyndsey


10 responses to “The End of an Era

  1. Tammy Needham says:

    Love in return!

    Sent from my iPhone Tammy Please excuse brevity and typos 😊

    >

  2. jasonb1382 says:

    Happy for you Lyndsey. I don’t think you will ever need antibiotics again and you will move on and never look back.

  3. Jacqueline Norris says:

    This is amazing Lyndsey – absolutely incredible!

    From: lymeoutlyndsey To: jaxnorris@yahoo.com Sent: Monday, March 2, 2015 11:29 AM Subject: [New post] The End of an Era #yiv6676159566 a:hover {color:red;}#yiv6676159566 a {text-decoration:none;color:#0088cc;}#yiv6676159566 a.yiv6676159566primaryactionlink:link, #yiv6676159566 a.yiv6676159566primaryactionlink:visited {background-color:#2585B2;color:#fff;}#yiv6676159566 a.yiv6676159566primaryactionlink:hover, #yiv6676159566 a.yiv6676159566primaryactionlink:active {background-color:#11729E;color:#fff;}#yiv6676159566 WordPress.com | lilneeds posted: “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 ” | |

  4. YAY!!!!!!!!!! You have been on a horrible journey and you have a new normal. Keep us up to date. You are an inspiration to me!

    Love and lots of hugs
    Caroline

  5. ksmargeson says:

    Holy wow. I have been instagramming about a 7 month battle I’ve been fighting with a devastating mystery disease, and have recently started suspecting and talking about late stage Lyme. Tonight, my lifelong friend Allie sent me your blog. When I woke up at 3am with my classic pounding heart, I gave it a read. Girl! I have read a couple dozen posts, I watched your video, I laughed, I cried, I sent links to my boyfriend. You’ve given me something so precious and incredible: Hope. Like you, I was a competitive athlete before this started. Crossfit, kettlebells, Olympic lifting. Now I’m lucky if I can walk my dogs a mile before I seize up in pain and fall into fatigue. 7 months… I have no diagnosis and no plan. And as my search for answers comes up empty and I exhaust myself looking for something to fight, I’ve been starting to wonder if I’m supposed to relinquish my old self entirely. Your posts about your fight and your perspectives on recovery have me renewed. So thank you. I’d say you can’t know what it means to me, but the truth is you may know very well. So thanks for taking the time to document so much.

    Tests should be back next week. If I do come back positive, lots of work to do. I am in the Seattle area. If you happen to know a good Lyme literate doc you can recommend, I would be incredible grateful.

    Thanks for the early morning pick me up.
    -Karla

    • lilneeds says:

      Oh, Karla, I’m so glad you find hope in my journey. I’m sorry that you have been struggling. To say I understand would be an understatement. I have recovered so much and I am beyond grateful for that. I am not the athlete that I was before, because my body still doesn’t seem to tolerate regular intense cardio, but I am way more active than sitting on the couch. I’ve done a couple of kettlebell lifting meets and am back to riding my mountain bike. You can get there, but it will take time. Lots of it. And patience. In fact, you really do have to let go of the person you were before and start anew. It’s difficult, but there is a lot of opportunity for growth in this illness. I hope you find what works for you. If your test came back positive and you want the name of my doctor in Seattle, email me: lilneeds@gmail.com.

      Thanks, Karla. I am rooting for you!

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