I just got home from New York City. Yep, that's me in the photo, relishing in the weird madness of Times Square, my plaid coat swimming in a sea of black jackets. This was my first trip to NYC, and let me tell you, I drank it up. Site-seeing and aimless wandering aside, the main reason for going was my appointment with Dr. Bernard Raxlen, a well-known LLMD who specializes in the treatment of tick-borne illnesses. The appointment was wonderful; the office was private and quiet, and he was supportive and knowledgeable. In short, it was a great relief to finally feel like I have answers to all those questions I had. I realized, once again, that I have a whole lot of stuff going on that I had learned to ignore or write off to "other things", whatever I thought those things were, who knows.
During the appointment, I had an incredibly thorough discussion of my health history, symptoms, and general well-being. He is very concerned that the Lyme has crept its way into my neuroendocrine system, given many of my symptoms, and he wants me to get a SPECT scan, which will show a 3D picture of the way my brain functions. I will happily make the appointment, since it was increasing presence of neurological symptoms that finally drove me to pursue Lyme testing in the first place. We did strength testing with antigens and on my thyroid. This not only supported what I already know about my allergies from blood testing, but also indicated I probably have both Babesia and Bartonella (lovely...). and a major thyroid deficiency caused by the Lyme (explains the weight gain, dry skin, hormone issues, and among many other things). He figures, based on my symptoms, that I have probably been harboring this for at least 10 years.
Sometimes my mind feels like I'm trying to see through pea soup. I forget words, I lose track of what I'm saying, I have a hard time getting back on track if I'm interrupted. I put things in strange places (phone in the fridge), forget things (I left my sweatshirt behind three separate times while at the doctor), and I'm easily distracted (totally screwing up some stuff at work the other day). Other times, I'm quick as a whip, no problem. My mental acuity comes and goes. On Saturday at the appointment, I was probably running at about 70%; it was a bit rough. Probably a good thing to be there in that state, all things considered.
Then, I had 18 vials of blood drawn, roughly 3/4 cup. All that blood is getting sent to three different labs to test for Babesia, Bartonella, thyroid function, and about 8 million other things that will help give a clear picture of what my body is doing, where I have deficiencies, and other things that indicate certain immune responses that are often lacking in Lyme patients.
Then I drank two big glasses of water.
After all that, we went back into Raxlen's office, and he started writing my prescriptions. Added to my regimen of herbal medicines and supplements, I will gradually be phasing in five new pharmaceuticals. This is requiring a bit of a shift in my brain regarding pharmaceuticals; I generally avoid them like the plague. In the past, I have said out loud many times that I will never take them. Now I need them in order to get my life back. I'm learning that you can really, truly NEVER say never, because you just don't know what life will throw at you. He is starting me on oral antibiotics, along with a couple other things. It is important to gradually ease the body into taking all the antibiotics, because die-off can be really intense. I will, very likely, experience some major Herxheimer reactions. What's that? It is a temporary worsening of symptoms that happens when bacteria die and your body is suddenly given a huge toxic load to process. For many Lyme patients, this die off reaction lasts months and months and months, and as treatment progresses, die off reactions suddenly surface again. I had some pretty intense die-off reactions when I was treating Candida last fall, and I know I'm sensitive, so I can only expect that this will be a very intense experience that could be somewhat debilitating. Only time will tell.
So, on Wednesday, I start the following pharmaceutical program, along with all the other stuff I'm already taking.
Weeks 1 & 2:
- Diflucan: anti-yeast prescription. It will help clear up my ever-present yeast imbalances and prevent the development of further yeast overgrowths while I'm taking long-term antibiotics.
- Armor Thyroid: thyroid medication
Week 3, add:
- Omnicef: antiobiotic. Start with 1 pill per day, then after 3 or 4 days, start taking 2 pills per day.
Week 4, add:
- Zithromax: antiobiotic. Start with 1 pill per day, then after 3 days, take 2/day, then after 2 days, take 3/day.
Week 5, add:
- Minocin: antiobiotic. Start with 1 pill per day, then after 3 days, take 2/day, then after 2 days, take 3/day.
I'm also supposed to double my intake of probiotics to help keep my gut bacteria in balance through all this. And you can be darn sure I'll be hitting the cultured vegetables really hard.
Granted, after we get back my test results, this may all change a little, it all depends on what we find. I'm going to have a check-in with my naturopath after 4 weeks, and a phone consult with Dr. Raxlen after 8 weeks. Then in March, at the 12 week point, I'll be going back out to NYC so we can monitor my progress. Then we either continue with oral, or we look at the option of IV antibiotics, depending on my symptoms and how I'm doing.
I cried a lot. But I left smiling. Why? I have a clear direction now. Finally. While it is scary to acknowledge that there is the need for some major action to deal with some potentially somewhat serious issues, I was reassured that there is hope.
Hope, my friends, is much stronger than fear.
I don't know what this experience will be like, but I do know that I am hopeful. I know that I am supposed to do so many things in this lifetime; I feel it deep in my body with much more intensity than I feel those damn little microbes. This process needs to happen in order for me to be able to accomplish my dreams. So, plod on I must. It is really exciting, actually, like opening a door to the rest of my life.
[Note to self: reread this post when I'm Herxing so bad I want to throw up, have chills, and can't get out of bed.]
As for the rest of my weekend, I absorbed New York big time. I fell in love; it is a city of many cities, each neighborhood unique. I was staying with a dear friend who lives near Columbia in the Upper West Side. He was a total darling, and gave me the grand tour. I'm a wanderer when I travel, not a planner, and he has the same approach, so we travelled together swimmingly. We went all over the city, hitting up his painting studio, checking out films in Harlem and Chelsea, hitting up all the tourist wonderment of Times Square and Rockafeller Center, and wandered over to the East Village for vintage shopping. We shared a table with a stranger at dinner, got invited to a party at his apartment that evening, attended the party, and had an amazing time. We wandered Chinatown, Little Italy, saw the South Sea Harbor, the site of the Twin Towers, and the Financial District. We walked through Central Park. I learned to use the public transit system there, even navigating it on my own! I combatted my blood sugar crashes by packing a ton of me-friendly snacks and carrying them around with me on our adventures (an extra big purse beats passing out anyday). I worked around my dietary restrictions by seeking out restaurants with menus I could negotiate (I love Google). I dragged myself up stairs, stairs and more stairs, taking breaks when I needed to (I get winded and totally exhausted with stairs these days...thanks, Lyme Disease). I had fun and felt totally confident with new people at that apartment party without drinking a drop of alcohol (I stopped drinking a couple years ago because it was making me feel terrible). I felt more like my old self again; adventurous, carefree, spontaneous.
I did New York. I did whatever my heart felt. And that felt amazing. I felt free. I laughed. I got out of my daily pattern and was distracted from my anxieties and concerns. I took photos. That alone was medicinal, the way a vacation should be. I can't wait to go back. I'm trying to figure out how I can live there at some point; I want to experience New York as a citizen of the city, not just a tourist. It is the most dynamic place I've ever been.
I took a little time out from all this excitement to have my admissions interview at the Oregon College of Oriental Medicine for their master's of Acupuncture and Oriental Medicine program. It's weird; my application process and Lyme journey seem to be existing together in this strange sort of balance. I sent in the application the same week I got my diagnosis; the school received my application the same day I had my first Lyme appointment with Leslie, my Lyme naturopath. then, while I was in New York for my appointment with Raxlen, I have my phone interview for school. The timing is uncanny, I see it as the Universe's way of telling me that these two things can coexist. My future need not be put on hold, but rather, these two things acting as strange counterbalances. Anyway, I had a phone interview with three people from the college. I think it went very well, and I should hear from them this week regarding my acceptance to the program. I told them about the Lyme, and my fears of not being able to start the program next fall if I'm accepted, whether for health or monetary reasons; it felt good to be honest. They were extremely supportive and understanding, and informed me I have a year to defer my acceptance if I need to. I've come to realize that my life is under no one's calendar but my own; if I need to wait another year longer so I can complete the program to the absolute best of my ability, I can. For a long time, I felt like my life was on hold because I was sick - I've come to realize that is totally wrong. My life is richer now than it ever was before, each moment providing endless opportunity to see something new. Life is not here to be rushed. It is here to be experienced, and there is so much to love and learn and live as I work toward my goal of attending school.
In the spirit of experience, I was running on total adrenalin in New York City. And now that I'm back hom, I feel my body crashing hardcore. I've got chills, feel a little queasy, and am very sleepy. I pushed it a little too hard, I think. So, I plan to take a bath and go to bed very early tonight. But hey, if I can do New York with Lyme, imagine what I can do when I get this crap out of my system? I'll be unstoppable, right? :)
If you want see a few more selected photos from my adventure, check out my album on flickr.
Okay, friends, let the journey begin.