Writing the title of this post is almost like a joke to me.
When I started blogging my regular updates waaaay back on February 9th, 2008 I NEVER would have dreamed that I’d still be writing them in August, 2009. Only wish this joke was a little funnier
Alright… enough boo-hooing. What’s happening?
A change in momentum
I’ve started seeing a new doctor. I’ll call him “Dr. M” because everyone seems to insist that only using a doctor’s last initial keeps him anonymous and free from prosecution. This is, of course, absurd because any person smart enough to make it through law school could probably figure out who my Dr. M is without much trouble. But whatever…I don’t want to rock the boat (too much).
Those of you keeping score at home will probably remember that I’ve been seeing Dr. R since May 2008. I began going to him right after I was diagnosed. Even though I’m moving on, I still think very highly of him as he was instrumental in helping me in many ways. However, after being under his care for over a year with only moderate improvement, I decided it was time to work with a doctor who has a little bit of a broader perspective and looks at the body as a whole; someone more integrative.
Dr. R is arguably one of the top LLMDs to see if you’re deathly sick or have pronounced symptoms. I sat in his waiting room more than once while someone younger than me struggled to get in and out the door with their walker. Frightening to watch. My issues, on the other hand, are vague, often hard to describe and puzzling what with all the exercise I can manage. I was starting to feel as if he was running out of ideas. I also felt that he was only interested in targeting the (supposed) root of my symptoms — Lyme, Bart and Babs infections. He often told me that once we eradicate the bugs, the other systems of the body will fall into line. I bought into this for awhile, but more and more I felt like, for me, it’s more complicated than that.
What finally pushed me to move on from Dr. R was a conversation I had with a Lyme-suffering friend of my neighbor. She told me she had been seeing Dr. M for a few months and was feeling quite better on his Bicillin shots. We chatted about his approach for some time. Over a series of visits he looked into her condition from all angles, tested her for a variety of different hormone and vitamin deficiencies and analyzed her diet. All of these things filled the gaps that I was feeling within Dr. R’s approach. I made an appointment.
As of today, I’ve seen Dr. M twice. The first visit was a very thorough hour and a half chat where we went over a lot of stuff. The charts I keep were invaluable for this. All the time and effort I’ve poured into them is indeed worth it. He actually smiled as he flipped through them saying, “these are GREAT!” Together we went over everything and discussed the different peaks and valleys. I was able to easily answer which drugs I had been on when and for how long as well as which test I’ve undergone. There’s no way I could have recalled all of that without them.
After laying out my treatment history and current situation he gave me his thoughts. He feels that my symptoms, while certainly Lyme-like, are a little off. My ability to continue with such vigorous exercise is, once again, very unusual. As is my lack of muscle and/or joint pain. With all my history and test results he’s confident that I have Lyme, but what he’s unsure about is how much of my symptoms are still from the bugs and how much of them are from the aftermath of their presence.
At first, what he was saying made me fearful that he headed down the path of a Post-Lyme Syndrome (PLS) diagnosis — the term that those on the side of the IDSA use to describe the symptoms remaining after the “standard” 30 days dose of antibiotics. Fortunately, as he continued, I realized that this was not his intention. I think he’s looking at Lyme through the same lens as Dr. R, but he’s just coming at it from the other direction.
Dr. R (and many other LLMDs it seems) feel that if they simply treat the infection and eliminate the threat to the body, then the body will come around, repair itself and balance everything out on its own. Dr. M seems more focused on supporting all aspect of the body while treating the infection so that the body can better fight and repair itself. The end result is the same, they just come at it from different directions. Like I said above, I think the former is probably best for those who are super sick. For me, however, I feel that the latter is more what I need.
Testing, testing one, two, pee
So, Dr. M’s running a bunch of tests on me. Most of them focus on my adrenal functions and cortisol levels. He’s also testing me for heavy metals. All of this involves collecting an epic amount if urine.
I was asked to do a 24-hour collection and then another 6-hour collection after taking some binding agent capsules. I did them, but both tests had a lot of instructions to follow and my Lyme-brain became very confused. I called Dr. M’s office and spoke to the office assistant and got very specific instructions from her. I did as she told me and put some in the shipping container to FedEx over to Quest Labs. The remaining liter of urine went into my backpack which I later took on my motorcycle through Manhattan traffic to his office.
Frustrated and depressed that my life had been reduced to hauling around large quantities of my bodily fluids to doctors that may or may not know what’s wrong with me all while paying for the privilege of doing so out of my pocket, I arrived at his office in a pretty foul mood. My mood quickly turned epileptic with rage after speaking to the nurse and learning that the assistants instructions were wrong and that I’d have to pour it all out and start over.
I’m laughing about it now as I type this, but at the time I was irate. The idea of pouring the entire liter out all over the counter flashed through my mind, but I thought better and maintained a level head. Next time I’ll know to ask for the nurse.
I see Dr. M again in a couple of weeks and should have some more info on the adrenals and other hormone issues. The more I look at the symptoms of adrenal fatigue, the more I think he may be on to something. Time will tell.