Status Update

I recently had an MRI of my lumbar and thoracic areas, because my doctor is still not convinced that my back pain is a result of the Lyme. (However she does agree that the whole body pain certainly is!) I had a cyst removed near my spine back in December of 2013, right before my diagnosis, because we thought that was the main problem. Of course we were wrong, and my symptoms have only worsened. Dr. D. says that they were so focused on that cyst, that they ignored many of my other issues from the report: scoliosis, spondylosis (which can cause pressure on the spinal cord and nerve roots), prominent fluid and disc narrowing, and a multitude of other problems.

This whole time, I've been convinced that the doc is wrong, that my Lyme IS the main problem. So I wasn't too optimistic about the results, but there was still a part of me that hoped she was right. The hubby and I drove two hours, just to learn that my MRI was "unchanged". Apparently, the guy who did my report right before my surgery a few years ago was extremely detailed, but all the new report showed us is that someone in Olympia is very lazy at their job! Dr. D. says that if she hadn't seen my 1st report, she would never know that I have so many problems in my back by looking at the 2nd one!

So we are going to try sending the MRI to my surgeon and ask if the guy who reported the first round will take a look. To be perfectly honest, I'm guessing this will be even more of a waste of my time and money. I'm so tired of this run-around and all the hoops I have to jump through. I know doctor's aren't perfect - but how hard can it be to tell whether or not my pain is coming from back issues?

Since Leigh was with me this time, I decided to talk more in depth with Dr. D. about her hopes and dreams for me, which is to get IV treatments. She thinks the best option is an intravenous antibiotic called Tygacil or Tigecycline, which is the strongest in killing off spirochetes. For two weeks, I would do two IV's per day. I would also have to take a third week off of work to recuperate. She says I will be doing nothing other than treatment, eating and sleeping. Killing off the bacteria means major herxheimer reactions, which in turn means feeling very, very sick. I've been reading some stories online and it does not sound fun!

There are some obstacles, of course, too. First I'd have to figure out a timeframe throughout the year where I can make it work with my job. Kind of hard with events every single month, but my boss says we'll make it work. Second is the cost - this obviously won't be covered by insurance so we'll have to figure out a way to afford it. And third is our location. My doctor's office is an hour away (in good traffic) so we'd have to drive down and back daily, and stick around town for 12 hours between treatments. Knowing how horrible I will be feeling, this doesn't appeal to me AT ALL. Ideally, if I'm having to use up my vacation time to do this, I'd like to find a place where we can relax, (lakeplace anyone?) :) so I may be researching other doctors in the PNW for a better location.

The other hard part, is knowing that this treatment isn't guaranteed to work. However, the six patients that have done this through Dr. D's office have all gotten significantly better, so there is some hope. I'm praying that everything will fall into place if this is the right thing for me to do.