The Steps of Admitting LYME

Hi, my name is Lisa and I have Lyme Disease. Yeah, it's taken me a while to admit it, especially to myself, but I'm ready to come clean. I have Lyme Disease and it's affecting me. I hate it. I don't want it but it's here, living in my head and body, all the same. I cannot change this fact.

Step 1: I have Lyme Disease. I am sick from it. You might not be able to tell when I don't feel well because I look just like myself. No broken bones. No needles in my skin. And I plaster on a smile and do my job during the day. Only my husband and kids know that when I come home from work, I have to be horizontal. It's rather a family joke now. "Mommy's going to lie down on her bed."

Step 2: If I treat this little devil inside me, I can get better. I believe that my Lyme doctor can help me, for today. There are many alternatives, from antibiotics to natural remedies, to homeopathy. I know that I need to hit the Lyme on all its levels: from biofilms to round bodies to spirochetes. I cannot do this alone.

Step 3: I believe in the Lyme groups, the people who suffer or have suffered from Lyme, who have come before me, who will come after me, who have researched Lyme and know more than most doctors or the CDC or the Infectious Disease Society. I believe that a Lyme Literate doctor can help. I believe that I can get support from other caring, infected people. Thee CDC now admits that there are at least 300,000 newly infected people every year. And those are only the ones they know about and acknowledge. I believe in people like Dr. Eva Sapi who continues to make discoveries about this disease, even though she herself has suffered from Lyme. I believe in the people who march in Lyme parades, who work to bring about awareness, research, change.

Step 4: Thinking back over my life, I've probably had Lyme for quite some time. Perhaps I got it when I was bitten by ticks, growing up in Connecticut woods. Oh, how I loved all those tree forts we built. I didn't love having to go to the doctor to get an embedded tick out from the back of my head when I was a young teenager. Could that have been THE tick? Who knows? I was pretty healthy, growing up. Strong immune system. I did have mononucleosis when I was 20 and had to drop out of college for a semester. I was always tired when I was in my 20s. And 30s. And 40s. But then, I did too much, or so I was told. Both my kids have Lyme. Did I inadvertently bequeath it to them when I was pregnant? If it weren't for my kids, I wouldn't have had myself tested. Or rather, I wouldn't have found a doctor who would test me with Igenex. I was already trying to figure out why I had bouts of lethargy.

Step 5: I admit that I've often told myself that I'm not as sick as others. And I'm not. There are people in wheel-chairs, people with heart attacks, women losing hair from Lyme Disease. People who can't get out of bed, who cannot hold a job anymore.

But that doesn't mean that I don't feel Lyme Disease attacking my body. I'm dizzy, tired, headachy. Brain foggy. I think it's affected my autonomic nervous system, unfortunately. I put on a face for the world, then worry that my husband is carrying too much of the home responsibility sometimes. Because my son has been sick for so long, many people just believe I have post-traumatic stress. They don't realize how Lyme insidiously creeps into a person's body and mind. I particularly resent the brain fog. Headaches are bad but I want to be able to think clearly. I have trouble remembering things sometimes.  I'm scared of getting Lyme-induced Alzheimer's. I am my mind. I need my mind.

I admit that I don't yet know if I have co-infections. 

Step 6: I am ready to get this Lyme out of me, to the best of my ability, knowing that I will probably never completely be Lyme-free. I need to get my body stronger again, so that my immune system can keep these spirochetes in check. I have given up gluten. I take all kinds of supplements and medications. I spend way too much money on pills and not enough on clothes, vacations, dates with my husband. With several ill people in one family, we spend upwards of $20,000 a year in medical bills (not covered by insurance.) I know I SHOULD give up sugar. Perhaps give up dairy. Maybe in time. I do exercise (bicycle--yes!) when I can.

Step 7: I need to live in acceptance, to embrace the fact that I have Lyme Disease, so that I can move on with my life and not fight the fact that I have it. To help deal with my son's PANDAS and Lyme, I began to blog, never knowing at the time that I also had Lyme. In fact, I remember when we went for my son's first IVIG. I met a few other moms of kids with PANDAS. Oh, how exciting that was! I reveled in the fact that I wasn't alone, that others intrinsically understood all we were enduring. These women spoke about Lyme rages and Bartonella. I was still getting used to PANDAS-World. It would take another few months for us to learn that my son belonged also to this once-foreign Lyme kingdom. 

Step 8: As I continue my Lyme recovery-journey, I will try to aid as many others as possible, try to increase awareness of Lyme Disease (and PANDAS, that NOT rare "rare" disease.) I will do my best to ensure that others around me have more information than I did, that others do not have to wait as long as we did to find answers and healing. I will do my best to provide support when needed.

My name is Lisa and I have Lyme Disease.

For a great blog (not mine) see: http://lymelessandlovely.blogspot.com/2014/01/top-10-things-to-know-when-someone-in.html