Lyme: Living with Lyme Disease

I AM NOT A DOCTOR. IF YOU THINK YOU HAVE LYME OR ANY OTHER ILLNESS CONSULT YOUR MEDICAL PROFESSIONAL.

Okay, let’s begin. This is my story, and as I mention, the stories of Lyme I encounter are as individual as your fingerprints. I’ve known people to get Lyme, get immediate treatment and overcome, while others have gone in the opposite direction spending years mired in the depths of chronic illness. I am somewhere in the middle. But, I am proof that you can overcome this particularly nasty disease and get on with your life. Stay positive, stay proactive, and think marathon not sprint.

The story of Lyme Disease is rife with secrecy, misinformation, and heaps of denial laced with questionable ethics. Lyme is far more prevalent, far more common, and far more far-reaching than most government agencies will admit. Lyme is global. The tick is a remarkable disease delivery machine. Resilient, relentless, and growing in numbers. Lyme is but one of many nasty little gifts this tiny beast can deliver. For those of you who wish to dismiss, wise up. The web of Lyme grows by the day.

And for those of you who contracted Lyme and got over it, well done, but remember, there are many who don’t share your luck or experience. And for those of you who are living with a Lyme patient understand there is no way for you to know just how bad the Lyme experience can be. Stay patient, stay understanding, and be proactive. Good luck.

11 Comments on “Lyme: Living with Lyme Disease”

  1. Thank you so much for sharing. I am one of the ones you’ve corresponded with about Lyme, and I really can’t thank you enough for your time, information, and expertise/knowledge. I appreciate this update and overview of your journey with it. Do you still maintain all the dietary protocols you put in place? I’ve kept most out, though I do find that I feel like the lyme fog and fatigue comes back if I’m not maintaining clean eating.

    1. Aileen,
      Oh ya. Diet is huge. I’m probably in as good a shape now as I’ve been in my entire life. Sugar, dairy, gluten, corn, alcohol, etc.

  2. BTW it was really gutsy of you to talk about this. I can’t even imagine how painful this experience has been for you.

    1. Jim,
      Hey, if it helps others I’ll do it. Not that big of a deal for me after all this time. But thanks.

  3. Thank you for all this information. My daughter was diagnosed with a torn muscle in her knee, despite a clean MRI, then that diagnosis turned into juvenile arthritis when they couldn’t find anything wrong with her knee despite pain and swelling, 3 years with that diagnosis, which then changed, and she had 3 lyme tests all of which are CDC negative but also are positive for lyme specific bands and considered positive by the LLMD and the testing companies. Its confusing. Why IV antibiotics versus the oral? Shes about to start antibiotics…

    1. Wendy,
      Potency and blood/brain barrier. But, check with your LLMD for the latest suggestions. I started on oral, MONTHS, then went to another LLMD who said “These aren’t strong enough,” and put me on another regime. I was just about to start IV when I started to come out of it. Also, I found immune IV’s really helpful. Vitamin C, Glutathione, etc.

  4. I have never commented on anything like this before. I appreciate your sharing and I get it. I went to school for photography, and ran darkrooms. Loved shooting and was diagnosed with Essential Tremors in my 30’s. Have had to put photography on hold and darkrooms are a no go. I understand the failed dealings with the medical machine. You become a GOMER, ( Get Out Of My Exam Room). It seems big Pharma and Physicians don’t want to be bothered and Insurance doesn’t recognize it, at least mine doesn’t.

    The island concept is is right on. I think you have the right idea and applaud you on the No-Bullshit way your approaching the subject. I have talked to others with ET and the islands are out there. I feel we stand on our islands an throw out messages in bottles and hope that someone on their island will get it and we wont feel so alone. I got yours and thanks.

    1. John,
      Wow, never even heard of ET. I had tremors in my arms and legs. I remember being at the Blurb office and having a difficult time typing. Before I was diagnosed, and freaking out a bit in my hotel room. Sorry to hear about your situation. Mahybe we can drag our islands together or build a canoe.

  5. Thank you so much for this. Really.
    I wanted to ask you, did you go to any Lyme specific treatment centers at all?

    1. Heather,
      Yes. And I did 40-days of a hyperbaric chamber at Lyme depth. Found a good doc at Amen Clinic in Orange County, Mark Filidei. He was good and knows Lyme.

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