Note: This post has a TMI Warning.
So, I’ve been treating for Lyme for almost 11 months, but I haven’t posted much about my treatment because I was slowly improving, not having horrific side effects, and I didn’t want to jinx things. In my experience, the minute I say, “Well, I’m happy (random thing) never happened,” then (random thing) happens.” Case in point: A few years ago, when I was at my sickest, I was trying to do this “gratitudes” exercise. At that point I didn’t know what was wrong with me, and one of my “gratitudes” was “at least I don’t have Lyme disease.” You can see how that turned out.
But treatment-wise, all was going well until my LLMD switched one of my oral antibiotics and added some supplements, and my digestive system staged the Great Gastrointestinal Rebellion of 2014.
Even my own toilet hated me.
I had to temporarily stop my antibiotics and supplements and take aloe gel, which was OK, and l-glutamine, which worked pretty well. And my doctor quadrupled my dose of saccharomyces boulardii, a probiotic that helps prevent antibiotic-associated stomach disasters as well as candida. I’m now taking so many probiotics that, if I were not taking antibiotics, the probiotics could probably build their own city in my gut.
The problem with taking a ton of things (which many spoonies will relate to) is that you have no idea what did you in. Was it the switch to cefuroxime, the supposedly easily tolerated antibiotic, from doxycycline, which many say is a stomach-destroyer but which I handle just fine (my body is always backwards)? Was it the different form of magnesium, magnesium glycinate, which is supposed to be easier on the stomach? Was it the serrapeptase, enzymes produced by silkworms, for the biofilm form of Lyme?
For non-Lyme afflicted readers: The biofilm form is when the bacteria become embedded in a nasty slime matrix that protects them from the medicines you’re taking to kill them. You want to break biofilms open and keep them from forming in the first place. (“Nasty slime matrix” sounds very scientific, doesn’t it?)
I now take boluoke, or lumbrokinase, which is a collection of enzymes made from earthworms, for biofilms. It’s supposed to be stronger than serrapeptase. The whole business of it being derived from earthworms is a bit unfortunate, as I had a pathological fear of all things creepy-crawly long before my life was ruined by a tick. We’re on the first floor and get centipedes from the yard, and God, do I scream.
J and I call centipedes “horrible brushes,” because they resemble brushes and they’re, well, horrible-looking. I’m sure they have a valuable function in nature and I should pick them up and gently place them outside. This has never happened. I squish all bugs. Maybe the tick bit me as part of a collective insect revenge plot.
There were several positive Lyme-related developments.
2) My mother finally believes in chronic Lyme.
OK, there is that blame thing, but it’s definitely a big deal for a dysfunctional family. Social Security believed I was disabled before my father did.
3) A dear friend has severe, progressive multiple sclerosis, none of the medications were helping, and she uses a wheelchair. Since Lyme can mimic MS, I asked her if she would consider getting an IGeneX test (the most accurate test). Her neurologist told her that this was a ridiculous idea and that there was no way she could possibly have Lyme. He practically laughed in her face, even though New York is one of the most Lyme-endemic states in the country and she had been camping many times. Long story short … you know what I’m going to say, right? She tested positive for Lyme and one coinfection. She is now seeing an LLMD.
4) I went to the New York Times Lyme protest in September, which was meant to protest the lack of media coverage of Lyme.
I was lucky enough to meet some great activists. And they kindly stood still while I struggled to get a decent shot.
Far left: David Skidmore, creator of the amazing Lyme Loonies cartoon series and my favorite chronic illness cartoonist. (The series name is a satirical spin on something a retiring CDC official said about Lyme patients.) You can also find Lyme Loonies on Facebook and Twitter.
Second from left: Jenny Rush, who created Lymethriving.com. Lyme Thriving is a support organization that provides conference calls and retreats to help patients deal with the emotional and spiritual stuggles that come with chronic illness. Some of the calls also have medical themes, such as regaining gut health. Here’s the Facebook and Twitter info.
Near right: Karen Mascuch Ravitz, a Lyme activist and patient advocate
Far right: Carl Nelke, a Lyme-literate, ILADS-trained therapist (LCSW). Here’s his Facebook info.
Last year there was no way I could have taken public transportation to and from a protest, stood for almost two hours, and felt energetic enough to meet new people. I have to remind myself of these things when I feel I haven’t made progress.
OK, if you made it through all that, please enjoy this video made by Tori Piskin, one of my favorite chronic illness comedians. In the video she entertainingly demonstrates why it is a bad idea to do your IV Lyme treatment in NYC’s Grand Central Station. She has a great YouTube series called Sorry, Having a Lyme Day.
That title kind of sums things up for me.