Ever feel as if you’re life is suddenly about to change? It’s been creeping up on me. Any day now, it will make its presence known. I’ve been here before.
Regardless of whether the test results demonstrate any active illness, I still feel a sense of impending “doom”. I will not only have to fight the existing war inside me, but also the political debate that surrounds tick borne disease. Perhaps Borrelia’s (bacteria that causes Lyme) key to success is its ability to have outside diversion. I still do not understand why the medical community has drawn sides on this issue. Is it because they cannot “see” it? Whatever happened to believing in things you cannot see? How does long-term antibiotic treatment outweigh the risk of disability and death from complications of a disease? How can you draw conclusions based on limited information?
I know I’m not well. Reflecting on the last 3-ish months as well as my current state helps me draw this conclusion. First, the heart palpitations from 2009 reappeared. Then new symptoms emerged, including: chest pain, generalized weakness, and arthritic pain. Weeks later, the headaches and vision disturbances of 2007 returned. Most recently, I developed neck stiffness and pain that seems to be associated with the headaches. Maybe only a sign of a weakened immune system, but I’ve just completed my third Diflucan prescription for persistent yeast infection of the breasts. I decided to stop breastfeeding my 9 month old infant, with much lament.
Levi’s last breastfeed was Thursday night. He has been irritable and sleepless. Although, I can’t say he ever slept well. Things seem to be “drying up”. I’ve been extending the time between pumping and the volume seems to be tapering off as well. I think we both miss our momma and baby time.
Recently, I found this blog. Reading this makes me think I should have had Levi’s cord blood tested. I never had any symptoms during pregnancy. Call me naive, but I figured I was finally getting over the residual symptoms from “probable” Rocky Mounted Spotted Fever (2009) and “probable” Lyme (2007). After reading journal articles as well as guidelines published by tick borne disease specialists, I discovered hormonal changes during pregnancy could mask many of the symptoms. Further more, Lyme CAN cross the placental barrier. And while less likely, Lyme CAN pass in breast milk. I could list a number of sources here, but I think Joseph Burrascano, Jr. M.D.’s paper on Advance Topics in Lyme Disease explains is a good start. It makes perfect sense to me, if the spirochete that causes Lyme is so similar to the spirochete that causes Syphilis, then why can it not be transmitted in the same way? Just because it’s primarily vector borne? Our knowledge of bacteria is largely based on experiments with cultures. It is a known fact that culturing the spirochete that causes Lyme is difficult. I feel our inability to culture and detect the presence of the spirochete results in applying limited information to the diagnosis and treatment of Lyme. I’m still sick. I know I have not been re-infected. Despite treatment in the past for probable tick borne illness, I still have waxing and waning symptoms.
I went to my PCP Tuesday to discuss my current symptoms and concerns. I found my current PCP in July 2009 after developing an acute onset of high fevers, headaches, and body aches. I literally called the Martha Jefferson physician referral for the closest PCP in my area. I have never had fevers higher than 101. My temperature was 105-106 for nearly 48 hours. I felt like death. I relocated to Charlottesville in January 2008 and had no reason to even see a physician, until that fateful Monday in July 2009. I’ve kept him, but realize this may go beyond his realm of practice.
My recent PCP visit also helped me realize that my medical history is complicated and emotional for me to relay to anyone. As a result, I’m currently in the process of developing a written time line of my medical history. I wish I had taken better care of getting copies of all my 2007 lab work, etc., but it wasn’t a priority of mine at the time.
Labs were drawn and possibility of tick borne related illness discussed. I return Sept. 16th for lab results. Funny, I’ve been feeling better since Tuesday. I’m not complaining. I would love to wake up from this nightmare.
In the meantime, I’ve started myself on a supplement regimen that is outlined in Burrascano’s guidelines for treating Lyme. I’m taking Pharmanex LifePak Women Formula (5 capsules twice daily), B-Complex vitamin daily, 400mg Co Q10 daily, 200mg Alpha Lipoic Acid daily, and 7 Meq Mag-Tab SR daily. It’s official, I’m taking old folks meds. I’m also following the diet prescribed: high in protein and fiber, low in carbohydrates and fat. Easy enough since my diet already includes lots of veggies, whole grains, and protein. I just need to cut the simple carbs entirely. Bye, Bye ice cream. Hello, green tea. I always preferred black teas to green teas, but this find is really palatable: Zhena’s Gypsy Coconut Chai Green Tea.
Sigh. It’s going to be okay, right?