Should I Keep Trying to ‘get well’?

Oh, yes. The elusive treatment that will bring the “cure.” I’ve been down that path a few times.

Oh, yes. The elusive treatment that will bring the “cure.” I’ve been down that path a few times. When is it okay to be okay with where I am right now? It sounds like “giving up”, but is it? When does pursuing treatment actually become harmful?

Honestly, I don’t know the answers to these questions, but in a week or so, I am coming up on the 7 year anniversary of my Lyme diagnosis. And it’s already been a decade at least that I have been ill in some form or fashion. So, these questions are on my mind.

I can’t change the fact that in the USA, Lyme disease isn’t treated as serious even though according to the CDC, more that 400, 000 + are infected yearly. Even these numbers are low due to reporting issues. I can’t change that almost no monies go into to researching this disease, that testing is only maybe 30-40% accurate and that there are only experimental treatments beyond the IDSA doctrine of 4 weeks of antibiotics. I try not to think about any of this anymore because it is a waste of brain power. See more about what the CDC says here: https://www.cdc.gov/lyme/postlds/index.html

But this leaves me, like thousands of others, in limbo: do we continue to try things that might help lessen our suffering or do we accept where we are right now? These other optional treatments can break the bank and are certainly not covered by insurance, and in many cases, they work for a bit, but then we are back where we started. Now what?

Am I in a better place than I was 7 years ago? Heck yeah. And for that I am grateful. But I’m still dealing with fatigue, memory issues, word loss, joint pain, and insomnia. One doctor tells me that most likely, this will be as good as it gets. Another tells me to try alternative therapies that cost an arm and a leg and/or have not been researched enough. Which way do I turn?

I absolutely love my Integrative doctor, do not get me wrong. This doctor helped me out of a very dark place about 3 years ago, and I have made progress with this doctor. S/He definitely has a good heart and wants to help me. But the last treatment we tried – a nasal spray to be basic – costs a lot. Now, S/He encouraged me saying, ‘it really can be a game changer.’ I couldn’t pass something like that up! I did the pre-testing $200 (to make sure my body was ready for the treatment covered by insurance) – and I ordered the spray – one month supply $250 (not covered by insurance). And while for some this isn’t much money, for my family it is. When I ordered the first month supply, I wasn’t sure if I would be able to continue if needed another month at $250. I figured we could manage it somehow, especially if it were working!

I began the nasal spray – 4 times a day – around Thanksgiving. I stayed on schedule, making sure I didn’t miss a dose. I mean “game changer”, my people! But you probably already know the outcome – meh. Nothing seemed to change at all. When I asked the doctor through our patient portal is I should continue, the answer was yes, but only if I were seeing results. So.

To say I was disappointed that there were zero results is an understatement. But was dumb of me to put any stock into the possibility that this could be The Thing to help me progress in my ‘journey towards wellness.’ Then I had doubts about my own possible culpability. Was it something I did to somehow mess up the treatment? Did I miss a few doses somehow during the holidays? What did I do wrong?

All of this is just plain old exhausting, isn’t it? While I surely do not expect ‘a cure’ I would like to make a little progress from where I am now – about the same place I’ve been for a couple of years now. But maybe this is it. This is the best it will get. And if so, can I be OK with this?

I’m not sure, friends. I’m just not sure.

Author: Read Between the Lyme

A Human being most of the time. Diagnosed with Lyme disease in March 2013. My life has changed with this diagnosis and this disease. Taking it day by day with Chronic Lyme Disease, learning as I go! #Livingwithlyme

9 thoughts on “Should I Keep Trying to ‘get well’?”

  1. It is exhausting and you have every right to feel this way. I have no answers. All I can say is stop blaming yourself and ‘just keep
    swimming’. It’s all we have…the next moment, the next decision. You are doing the best you can. It’s not your fault the Med did not work. Frustrating, yes, but not your fault. Hugs

    Liked by 1 person

  2. I’m going through something similar with my fibro and my gut health as I feel they could be connected. It is exhausting to keep trying new things that cost money and see no benefits. I feel ya, sister! I’m questioning the same thing myself. #chronicpainwarriors 💞

    Liked by 1 person

    1. Hi there! Oh gosh, you know all too well, I’m sure. I seem to go in cycles: for awhile I’m just gung-ho on trying to get answers, trying treatment, etc. And then, I’m just over it all. Like you said, exhausted! Thanks for your words of solidarity! It means so much. I hope you get some answers soon. ♥️

      Liked by 1 person

      1. You’re welcome! I go through cycles too. I think I’m just over going through the cycle of defeat, so I’m looking to turn that into a cycle of acceptance.

        Liked by 1 person

      2. Exactly! I want to keep an open mind but also find a way to put more focus on acceptance. I’m moving in that direction but sometimes, especially on days I feel sick and/or have severe pain, it’s hard. Also, culturally, it see like our society pushes ‘getting well’ more than other messages. Maybe I just see it that way because of my situation. IDK. I’m looking forward to reading more about your RV! My husband and I want to do this as well so we can maybe travel in the summer. We just need to save some money for a used truck. Hope you are having a pain free day!

        Liked by 1 person

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