So, I've Got Lyme Disease

Posted by Nikki DiSalvo on

I still have to say it to myself every now and then to keep it real in my mind; I've got Lyme Disease. I don't have a panic disorder. Or lupus. Or MS. Or any of the other multitude of diagnoses that are often wrongly assigned to people with Lyme. And I'm not just batshit crazy either, which I was truly beginning to believe before I was properly diagnosed. It's only been about two months since I found out what was going on, but I've never learned so much about one subject in such a short amount of time. I was on IV Rocephin for 28 days, started only two days after my diagnosis. I wish I had done more research before I made the decision to go through with that treatment. Now I am using Banderol and Samento (herbal treatments) until I can find a Lyme literate MD to help guide my care. For about 5 years I have been struggling with various symptoms that seemed like they must have been unrelated, everything from visual disturbances and digestive issues to cardiovascular and neurological issues. Come to find out, there actually is a disease that attacks so many body systems at once, and that's Lyme Disease. Huh. Funny it was never even looked at as a possibility until I asked to be tested, especially considering I live in Upstate NY, a veritable hotbed of disease-carrying ticks. If you're here reading this chances are this story is all too familiar to you or someone you love. 

Now I have my answer, like it or not, and I'm determined to make the best of the difficult hand I've been dealt. I'm incredibly lucky to have an amazing and supportive family behind me (especially my husband who pushed me to get tested even when I was determined to give up and never go to another doctor again). This blog is one tool I plan to use in an attempt to keep track of what's going on in my treatment, provide support to others dealing with similar situations, and hopefully educate some people who are unaware of the nastiness that Lyme Disease inherently brings. 

Having Lyme is not only physically and emotionally taxing to the point of exhaustion, but trying to figure out how to go about getting the proper treatment is a huge issue of its own. There is so little knowledge about the disease among the general public, but worse than that, the knowledge deficit is almost as big in the medical community. That's something I will discuss more in a future post because trust me, there's a lot to be said on that front. For now, I invite you to join me as I quest for answers and ultimately to regain the pieces I have lost along the way. 

Be Well,

Nikki