Think you might have Lyme?

My “Lyme lightbulb” went off when I was reading another patient blog. Seeing her account so similar to my own, suddenly all the puzzle pieces of my unexplained health issues fit together. Are you having an experience like that? Here are some good things to know and steps to take.

First, you will find that there is a large controversy about late-stage Lyme (sometimes called “Chronic Lyme”). Don’t worry too much about this right now. But know that any educational resources you’re reading from the CDC and the ISDA, are written for people who just got a tick bite.

If you’ve been infected for a while, or think you might have been infected without knowing, even if you’re just now showing symptoms, those won’t apply to you. Most of your conventional wisdom doctors are educated by these guidelines, though, so it’s important to seek out a Lyme literate doctor (LLMD or LLND) for further help.

Here are some quick facts:

  • Ticks are in every single part of America, and those carrying Lyme can be as small as a poppy seed.
  • Fewer than 50% of infected patients recall a tick bite.
  • Fewer than 50% of infected patients recall a rash.
  • New studies show Lyme may be transmitted by other vectors (mosquitos, flies, mites and fleas). It may even be spread sexually. And it’s definitely spread from mother to child.
  • If you ever had a “bulls eye rash” that is always indicative of Lyme.
  • Standard Lyme testing is only 65% sensitive, meaning it misses 35% of cases. It’s VERY possible to test negative on these and have a very real infection.
  • The best test you can get is the Western Blot through Igenex, which you can order at Any doctor can sign the form.

Here are resources that can help:

  1. the International Lyme and Associated Disease Society for great basic info, and for referrals to Lyme literate doctors in your area
  2. The Under Our Skin documentary, free on Veoh
  3. Under Our Skin 2: Emergence, rentable on YouTube, is the sequel (look how much those patients healed!)
  4. For questions and support, look up “Lyme Disease Group” or other support networks on Facebook

If you believe you might be infected with Lyme disease, or if you’ve already been diagnosed with MS, ALS, Parkinsons, Fibromyalfia, CFS, or low thyroid,  please consider getting the Western Blot and having it processed by  Igenex laboratory. This lab tests for more strains of Lyme disease, so it has far higher sensitivity ratings and more accurate results. Most doctors should be familiar with this test and can order it. Or, you can order your own test kit from Igenex (call to order – they’re old school), and have your doctor simply sign the form.

Lyme is big and scary and with so little known about it, it’s tough to find answers, especially diagnosis. But it IS very treatable. This is an exciting step. Good luck.


4 thoughts on “Think you might have Lyme?

  1. Karla,
    Your story is my story with the exception that I got help a lot sooner. It’s been two years and I’m about 90%. Still confident that I can drive this thing into remission. Thanks for your blog as it helps to “talk” to someone you has experienced the debilitating symptoms the same as I did and to know that I’m not crazy (the diagnosis I was given by a Neurologist)! Blessings….


  2. Thank you for sharing your blog . . . makes me feel like I’m not alone in this crazy fight. I too am from the Seattle area, & have been told many times that Lyme Disease isn’t found in this area??? Should be getting final test results soon & would welcome any recommendations for Lyme-literate doctors in this area. I’ve walked away from too many docs, & it’ll be a relief to find help & understanding for a change. Time to bring Lyme into the “lymelight” & convince traditional doctors to gain knowledge of this misunderstood epidemic. Hang tough!!!


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