Personal update: June 3, 2012

Hi all, it's been a while since I've updated my own personal story. I'm on my second round of IV antibiotics and am around Month 4. I will see my LLMD next week, to find out how much longer he wants me to keep going, it's possible I may have to go 6 to 9 months this time. The first round of IV abx, I was on for 4 months and elected to take a 2 month break. Within a few weeks, I started to backslide quickly and my symptoms all came back with a vengeance. The worst symptom I had when I started my first round of IV Rocephin was incredibly severe nerve pain. The standard pain chart is 1-10. Mine felt like a 20. I was so miserable. I went to neurologists, orthopedic doctors, NO ONE could help me with the pain. My legs were also getting weaker and weaker and I literally was starting to look at wheelchairs online. (I was already using a walker to get around - named "Pink Floyd"!) I had been seeing another doctor who had me on oral antibiotics for a year, but nothing was happening. I saw no improvement and in FACT, was getting worse - mostly my Neuro symptoms. I had brain fog, trouble with word recall, memory loss, and then there was the nerve pain. I can't even begin to describe to you how awful that was. 

I switched doctors and found a new LLMD who, because of my severe neuro symptoms, decided to treat more aggressively. Fine with me! When I started the first round of IV antibiotics, nothing miraculous happened for several weeks. I kept waiting for SOMETHING, and during that time, I was in so much pain, I clenched my teeth so hard that I literally BROKE 6 of my teeth. And my Primary Care Provider STILL did not take this seriously (that's what really still upsets me - he just kept sending me to orthopedic doctors to "evaluate" me when I could barely walk) Around the 5th week of IV Rocephin though, I felt a shift. My nerve pain FINALLY Started to come down, my legs felt stronger and many of my other symptoms began to get better. Within a few more weeks, I continued to feel better and better and for the first time since I got Lyme, I had HOPE. None of the other dozens of doctors I'd seen had been able to give me that one thing: HOPE. I have to say, I am SO grateful to have found one of the best LLMDs and I am lucky that he is literally only 15 to 20 minutes away depending on traffic. It saddens me when I hear of people who have to drive HOURS to get to an LLMD appt.

This is me on a "typical day" Too sick to get out of bed!
(Sorry the pic is so blurry!)

So back to now: I'm back on IV Rocephin and after the first 5 weeks of the 2nd round, sure enough, I started to feel MUCH better. I actually for the first time in a year and half, took a walk around a park with my dog which was a milestone for me. I still have good days and bad and unfortunately with Lyme - just when you feel like you're turning a corner, you have a relapse, and feel like you're taking two steps backwards. But from experience, I know that I just have to stay the course. Whenever I start doubting whether I'm really improving, all I have to do is think of where I was a year ago and I'm SO much better than I was then. My progress is just SO incredibly SLOW and I'm impatient! I want to be better NOW! Dealing with a chronic illness takes so much patience and coping skills and so far (overall) I've done a pretty good job of staying sane and not getting bitter and depressed about my situation. Sure I have my "poor me" moments, but they don't last long and they actually are cathartic sometimes.

I've found that by helping others, I feel like I have a purpose in my life again - I've become a mentor to dozens of other Lyme patients and although lately it's become a bit overwhelming (I've had some new symptoms in the past month or so that have set me back a bit) and I've gotten a bit behind in answering all the emails from people looking for answers.

See - some days I actually have GOOD DAYS! It helped
that my BFF was visiting - really lifted my spirits! People
see me like this and think "She doesn't look sick at all!"
If they only knew. . . .

I am currently the "expert" on All Experts.com in the Lyme Disease category and while it's extremely rewarding, I'm the kind of person who will write a 2-3 page answer if I have to - because I really care about helping people. As a result, it's VERY time consuming and I'm trying to figure out ways to make things more efficient. I've noticed that I'm answering the same types of questions over and over, so I think I'm going to change my blog into a better resource that I can direct people to so they can get the answers they need. Plus, one symptom that has NEVER gotten better since I started, is my Lyme arthritis. If I spend even an hour writing online, my fingers joints get so painful, that I have to stop. So coming up with a more efficient way to help people is an absolute MUST at this point. Because I'd rather come up with more effective solutions versus giving up my role at All Experts.com. There is currently no other experts under the Lyme disease category and there are SO many people who need ANSWERS! I know, I was one of those people in the beginning who had no idea what to do and it really is gratifying to help people.

So right now, I'm hoping to have some more blood tests taken next week to figure out why the heck I've suddenly developed crushing fatigue once again, bruising, and now I'm having major stomach issues where I get sick after eating. So frustrating because 2 months ago I was doing SO much better! But that's the roller-coaster of Lyme - you're up, you're down - sometimes you just have to "go with it".

Thanks for listening and I hope to come up with a new "revamped" website soon that will  include a FAQ section as well as links to many more resources out there.

Best,
Bonni aka Sandie