A Very Different Top Ten List

In my travels since being diagnosed with Lyme Disease, I’ve run into quite a few people who sound like they probably have it, too. Either they’ve been diagnosed with one of the classic Lyme “mistaken diagnosis” illnesses like Rheumatoid Arthritis, Fibromyalgia, Chronic Fatigue, MS, ALS, Parkinson’s, Lupus, Vertigo, Immune Dysfunction, Brain Fog, strange neurological symptoms, or whatever else, or they’ve stumped their doctors time and again with symptoms that no one can figure out. Others have been told (by doctors and loved ones) that it’s all in their head and they need to get a life. Then there are my favorites, the ones who’ve suddenly come down with symptoms of this tick-borne illness after 1) deer hunting and dressing the kill (!!!), 2) working in the garden, 3) hiking, 4) camping, 5) golfing, or 6) picking ticks off themselves.

What I’ve learned is a cliché, but I’ll repeat it anyway. 

Denial is not just a river in Egypt.

So here’s the deal, for those of you who might recognize yourselves or a loved one in the intro above. While it may be true that those of us with Lyme have the potential to see it everywhere, what’s also true is that we are probably bigger experts on this disease than any of the doctors you’re currently seeing. 

And while it may seem presumptuous of us to suggest that you might want to check into this disease for yourself, we don’t bring it up and thus risk your rejection lightly. We say something because we CARE. We’ve been through this and we want to spare you the uncertainty and pain we’ve experienced.

Here’s a Top Ten List of the things I’ve heard when talking to people who I believe might have Lyme, and a bit of commentary from my unapologetic, opinionated self. 

1) “Interesting. I’ll ask my doctor about it.”   Wrong approach. If your doctor knew enough about Lyme to know how to diagnose you, they would already have tested you for it based on your symptoms. So the real question here is, how much time do you want to waste? Because the people I know who went this route have wasted YEARS that they could have been spending getting well. And when they finally got a clue and went to a real Lyme doctor, they’d already thrown away a ton of time and money while spinning their wheels.

2) “Oh, no, it can’t be. I was tested for Lyme and my doctor told me I don’t have it.” This was me, 22 years ago. And here’s what I know now. Unless your doctor is a Lyme Literate MD (LLMD), whatever test they sent you for is probably a bad one. And there are many bad ones, especially the ones the non-Lyme Literate doctors use. In fact, there are really no great, comprehensive tests for Lyme because they all have a pretty high rate of false negatives. Lyme hides out in the body very successfully and can be extremely hard to detect. The best Lyme doctors know to utilize several different tests, and if there’s still a suspicion of Lyme after a negative test result, to dig further for answers.

3) “I need to find a doctor who takes my insurance.” Good luck with that. There are very few qualified LLMD’s who take insurance. I wish I had better news on this front. Don’t expect to stick with your regular doctor. He or she probably doesn’t have a clue about Lyme, and if you DO have it, and you follow their advice, you’re headed for big trouble. They're likely to steer you in the wrong direction and give you drugs that will actually help the Lyme to flourish. I speak from experience, after being given years of immunosuppressive drugs for my "Rheumatoid Arthritis." Don't go there if you don't have to.

4) “I don’t want to find out. I see what you go through and that’s not for me.” Yes, but I’m in the process of getting well, while the suffering you’re doing (which is why I suggested this to you in the first place) will continue without any improvement until you find out what’s really wrong with you. See #1 and “How much time do you want to waste?”

5) “I don’t want to find out until they find a cure. What’s the point?” Right. So don’t treat cancer because there’s no cure yet? Come on. There are lots of things for which there is no cure, but that doesn’t mean you can’t do everything in your power to be as healthy as possible. I was horribly sick for years, misdiagnosed for twenty of them. Finding out that I had Lyme was the best thing that could have happened to me. I have my life back, and I'm loving it. You, too, can have a shot at living better than you are now.

6) “I’m going to go through the system first and see what we find out before I go see a Lyme doctor.” Again, see #1 and “How much time do you want to waste?” I don't know a single Lyme patient who ever did well by "going through the system." Why not cut to the chase and get some real answers? How does it serve you to drag this out?

7) “I don’t want to have to change my diet.” Believe me, I get it. I didn’t either. It’s no fun being the pain-in-the-ass at a restaurant who needs to know what’s in everything. It’s hard to say no to things I used to love. But on the other hand, now that I’ve been living with my new, healthy diet for almost two years I can say that it really wasn’t that hard, and that I wouldn’t go back to eating crap again even if I could. It’s too satisfying to know that most everything I put in my mouth is healthy for me, and that I’m not eating ANY junk at all. It’s also easier than you think to make delicious food that can even satisfy your sweet tooth. I make a killer cinnamon spice latte with organic coffee and no sugar or dairy that even my sugar and dairy eating friends rave about. I can whip up pancakes that everyone loves in five minutes, and they're low carb, sugar-free, gluten-free, and dairy-free. It just takes a little re-education. Really.

8) “My brother/sister/uncle/aunt/mother/father/next-door-neighbor-the-doctor says that Lyme is all a big hoax and I believe him/her.” Great. I have a movie for you to watch. It’s called “Under Our Skin.” Here's the link: http://www.underourskin.com/#home-underourskin . If that doesn’t change your mind, I think I’m done trying to convince you. I only have so much energy and this isn’t how I want to use it. But feel free to come back to me if you ever figure it out, because I’d still love to help.

9) “I think I’ll go see an Infectious Disease specialist. They should know all about this, right?” NOOOOO! They are the absolute worst doctors when it comes to Lyme disease. Please, steer clear. I haven’t heard a single good story from someone who went that route. Save yourself. Lyme Literate MD's have taken the time and spent the energy and money to specialize in this disease, and they've got the latest and greatest information and tools for you. Of course if banging your head against the wall feels good to you, go right ahead and see an ID doctor.

10) “I’ll just sit with it and see what happens.” Okay, as long as you understand that Lyme is a ticking time bomb, waiting for your immune system to crash so it can blossom into its full glory. This happened to me, before I knew I had Lyme. I thought I’d beaten whatever ailed me and was totally well for three years, until I was rear-ended at a red light and got all my symptoms back. And by the way, they’ve found Lyme in Alzheimer’s lesions, so the good news is that if you wait long enough, you probably won’t remember that you could have kept yourself from getting dementia.

It’s still incredible to me how reluctant people who are already suffering are to pursue a diagnosis. Yet it shouldn’t be. I sat on an “inconclusive” Lyme result for years without acting on it, even though my LLMD told me he thought I had Lyme. It was only when a new test came out and gave me a resounding Positive that I finally succumbed to the lifestyle changes and protocols that would make me well. So I do understand. Change is hard. We don’t like it. And the devil we think we know (in my case, Rheumatoid Arthritis and Fibromyalgia) can be a lot easier to contemplate than the one we don’t. 

But here’s the thing. A Lyme diagnosis is not all bad. There's a certain relief in finally finding out that there's a good reason for all those weird symptoms you've been having. And there are actually some beautiful silver linings in having Lyme, a few of which I’ll mention here. (Feel free to add more in the comments.) 

It’s all the wonderful, helpful people I’ve met who also have Lyme, who are valiantly fighting the good fight, and sharing with each other so that they can pay it forward. 

It’s the caring doctors who service this community, knowing they’ve chosen for themselves a very difficult patient population and that they’re bucking the establishment every single day. Many of them risk their careers to do the right thing for us. They're heroes, pure and simple.

It’s the Facebook support community of Lyme patients that is there for us no matter what, where calls for help are answered so compassionately in minutes by people we may never have met in person. 

It’s all the healthy habits I’ve learned that will probably save me from a lot of those other diseases I was headed for with my high sugar, junky diet prior to this diagnosis. 

It’s the appreciation for every good day, and the perspective that allows us to understand what’s really important in life. 

It’s the clarity that comes from learning who one’s true friends are, because those are the ones who support us through thick and thin. 

And the real biggie for me is this: 

It’s when the risk of speaking up pays off and someone actually listens to us, acts on it, and begins the road to recovery. Knowing that we've just spared someone from years of needless suffering is, to me, the greatest gift of all–the gift and the privilege of making a difference.