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

Post-Treatment Paranoia

on May 5, 2015

It’s been about two months now since I stopped antibiotic therapy for Lyme. Up until last week, I have had only confidence in my decision that I was finished with treatment. I had run out of money for treatment with my doctor in Seattle and I figured you have to draw a line in the sand somewhere. So I did. And I felt good about it.

Then, the ringing in my left ear came back with a vengeance. At first, I thought, “gosh, my allergies are really bad this year.” Because they are. Then my teeth started to hurt so bad when I brush, that I had to stop using my electric toothbrush. TMJ pain started up again also. This is when the fear crept in. It was a slow creep in the beginning. I was able to talk myself off of a cliff pretty easily. Then, I went and did a mountain bike trip with friends on one of the San Juan Islands and the fear got pretty darn loud. I had been having intestinal distress for about three days and that day wasn’t any different. On top of that, I started to get some brain fog. Then, I bent over to pick up my hydration pack off of the ground and completely strained my shoulder for no apparent reason. Overall, I felt weak and unhealthy. However, I was still able to ride just fine. I was insanely tired the next day and found myself sitting around the house all day despite sunshine and warm temperatures outside. Then I really started to worry. It was happening. I was getting sick again. My worst nightmare was coming true. What would I do? How would I pay for more treatment? How could this happen?

Fear is an ugly thing and although some level of fear is healthy, when you reach the paranoia level, it isn’t. I was there. I could feel myself holding my breath and my stomach getting tighter. Lyme Disease was the absolute hardest thing I ever had to experience and I want so badly to never have to go through that again. My brain latched onto every small pain or discomfort in my body and the sense of dread was overwhelming. Then, I woke up the next day with a cold/flu. That was it. That’s why I had been feeling tired all weekend. I was coming down with a cold. No big deal.

So now I sit here mouth breathing, and contemplating my future and hoping that I have the courage to move forward without fear, since the concept that we can predict even the next moment is ludicrous. To understand that even if I DID relapse, I could find a way to get well again. I don’t want to live in fear of this illness. I want to practice calm abiding for whatever comes my way.

Letting go is hard.  But I am trying. For now, please excuse my paranoia.

9 responses to “Post-Treatment Paranoia

  1. Kristofer says:

    Hi there. I’m glad you’re feeling weel

    I have developed some kind of rash together with a lot of other symptoms like yours. Pain, dizzy, fatique. [whole book here]

    I found your blog through google image. Trying to fins out my rash. I looked at your pictured. They are somewhat similiar. But my rashes are never raised. Sometimes on my legs they are. Like nettle rash.

    Heres my images:

    What do you think

    • Kristofer says:

      wow, didnt know they would actually show up here.

    • lilneeds says:

      Hi Kristofer-
      Your rash looks different than mine in that it’s flat and not raised, as you said. It’s hard to say what it could be. It for sure sounds like your body is struggling with inflammation. Maybe try an anti-inflammatory diet if you are getting no help from doctors? See what happens. If it doesn’t help, move towards blood work. I’m not sure. I hope you find answers!

  2. ksmargeson says:

    Omg I read the first half of this post and had to shut it off and come back to it when I was mentally prepared for bad news. Haha. I’m so glad it was just a bad spell from normal human germs. You must’ve been terrified. It’s so interesting reading your posts because our symptoms are so similar. My ringing ears, TMJ pain and muscle tightness are all pretty bad right now. Still waiting on that Lyme test though. Those igenex guys take their time!! Anyway. I hope your enjoying life with a little more gas in your tank. Thanks again for documenting so much!!

    • lilneeds says:

      Haha! Sorry to scare you. 🙂 Yes. Igenex takes their sweet time. I’m sure they are slammed, unfortunately, with new business these days. I am definitely enjoying life with more gas in my tank. I even bought a house! Moving forward! Thank you!

  3. ksmargeson says:

    That’s so exciting!! And hope inspiring 🙂 congrats!! Love it. Moving forward indeed.

  4. Bryce says:

    Hello Lyndsey would Like to talk with someone Like Urself about Lyme because ur a lot like myself all the way down to Cross Fit 3 days a week and now well don’t even know where to start. So really hope to hear from you 🙂 So just write me at

  5. D says:

    Hi Lyndsey,
    I found your blog through a search about saunas for Lyme. Thanks to you I was careful and only did a short time in there and seem to be ok. In terms of cost, I feel your pain. I am only one month into this and have already gone through $2500 or more. While trying to plan for what happens when I run out of money, I thought about a very simple, low cost alternative for you and possibly myself: the three herbs on Stephen Buhners protocol, plus antibiotics from India. You can order these from online pharmacies. Seemed shady to me at first but perhaps it could work. I hear a lot of drugs used in hospitals here are actually made in India anyhow. After years of treatment by an LLMD, you probably know enough to treat yourself for a while if symptoms come back and you can’t afford the doctor visits. The alternative of no treatment seems worse to me, so just my two cents. But hopefully you’re done forever!

    • lilneeds says:

      Hey, thanks! Glad to hear you bought a sauna. I still use mine a minimum of twice a week and really believe it is an incredible recovery and maintenance tool. I actually am on Buhner herbs right now. I likely will maintain those for another year or more, depending on symptoms. I have been off of prescription antibiotics for a few months now and am happy about that!
      When I was in treatment, I definitely thought about ordering prescription antibiotics online, but was a bit concerned about the quality. It’s just so hard to know. But, like you said, totally worth trying if that’s the only option. It’s a good idea and lowers my anxiety a bit about “what would I do if I relapse?!” 😉 So far I am maintaining, but I do have to be dedicated to sauna use, proper sleep, low stress, a clean diet, and moderate exercise. Good luck to you! I hope you are able to recover!


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