I've Got Lyme

The Husband Speaks

Posted by Derek Savory on

Hello! Husband here. Nikki has been asking me to write up an entry for this blog for a few weeks and I figured there's no time like the present, especially after the events of last night. I'm going to apologize now for my lack of writing skills, I'm just a college drop out construction worker. I haven't done anything like this in over a decade so I'm not sure where to start or where to finish but I suppose starting with last night and going from there sounds about right.So I returned home from a long day working outside in...

Read more →


The Quest for (Lyme Literate) Care

Posted by Nikki DiSalvo on

Since my last post things have been up and down. Good days, bad days, in between days. But none so bad that I couldn't walk under my own power. So I still count myself lucky. I've been looking into Lyme Literate MD's and not having much luck at all. I got so far as to make an appointment with one doctor but cancelled when I heard some negative things about her reputation followed by her office sending me patient history forms that already contained someone else's information. Bad sign, for sure.The doctors who have decent reputations are charging $900 and...

Read more →


Not the Post it was Supposed to Be

Posted by Nikki DiSalvo on

Well, this post was going to be about what it was like having a PICC line and being on IV Rocephin. But then life happened. Yesterday morning I started writing the post, but only got through the quick update part. I planned on writing the rest later in the evening, after picking my husband up from work (his car has been in the shop for almost a week, poor guy). So this is where I left off:A quick update before I get into the bulk of this post; I've had a few really good days lately! It's been at least...

Read more →


Nope, I Still Don't Have An Anxiety Disorder!

Posted by Nikki DiSalvo on

This morning I saw my primary care doctor. What a disappointing experience. I must have been following some blind optimism, believing that having a seropositive Lyme diagnosis was going to open up some new level of healthcare. Like now I have this definitive proof so they have to take it seriously, right? Apparently not so much. As you've seen, I take a lot of care to make sure I get my symptoms logged on a daily basis. I do it for myself, so I can see what's getting worse/improving but I also do it so I have a record to discuss...

Read more →


My Complicated Relationship with Movement Part 2

Posted by Nikki DiSalvo on

  I started playing disc golf just a few months before my symptoms began (around 5 years ago). Although I have no idea where or when I was bit by the tick that did me in, there's a definite possibility that it happened while I was on a course somewhere.  It makes me so sad to think the sport that brings me such joy may have inadvertently led to the disease that brought so much suffering into my life. I used to play as many as 3 rounds a day sometimes, with ease. Now I have a hard time getting...

Read more →