I see Dr. X. for my follow up appointment. My sister and Mom go with me because they have been on this journey with me and are hoping, like me, we will finally get an answer. Up to this point, we have been going on the assumption I have lyme based on a clinical diagnosis. My Igenex test results show borrelia burgdorferi (Lyme) result and a positive babesiosis (co-infection). After a year and a half of limbo, too many doctors to count and questioning my own sanity, I have validation. I hear a character on a show say, "there is no place as lonely as not being believed." I wouldn't have known what he meant prior to this experience, but after having my own doctors make me feel like I am crazy, I understand. Lyme testing is unreliable, and there are many factors that come into play to determine if someone gets a positive test; timing of the test, the person's immune system, what kind of test, amongst others. Lyme patients who don't remember a tick and never saw a rash have to insist that their doctor test them, often to loud protests from said doctor. I had Bell's Palsy (paralysis of the left side of my face) which is a classic lyme symptom a year and a half ago. I asked the neurologist at the time if it could be lyme and he gave me a resounding 'no." I was eventually tested with the standard Western Blot and Elisa tests by various rheumatologists, always getting a negative result. What I didn't know then that I know now is that approximately 50% of patients who have lyme get a negative test result. If I had just gone to Igenex in the beginning, I could have avoided almost 2 years of pain, frustration and fear. And saved a lot of money!
Dr. X. also tells me that my cortisol levels are below normal range. In a healthy person, cortisol levels rise in the morning upon waking and slowly go down throughout the day, hitting a low point in the evening so one can go to sleep. My cortisol level is in a flatline, with no spike in the morning. This explains the severe exhaustion upon waking. When the cortisol doesn't go up, I have no energy to get out of bed. I asked every doctor along the way about my cortisol levels, and only one of them entertained the idea that there could be a problem with it. She tested me for it, but told me it "was fine." Perhaps at the time it was, but I have told my sister for two years that I have constantly felt like I am in "fight or flight" mode and that something is wrong. I learn from this experience to never doubt my own intuition again.
Dr. X. gives me Mepron and Zithromax (standard for babesia) and Hydrocortisone. The hydrocortisone (a steroid) is for the cortisol. There is no "synthetic" hormone of cortisol, like there is for progesterone or estrogen. But hydrocortisone, (in small doses), closely resembles cortisol and can help raise the levels. This, hopefully, will allow my sleep to regulate. It has been SO SO SO long since I have had a night's sleep in which I slept through the entire night without waking from nightmares, sweats, or noises. What a joy it will be to actually SLEEP. He also gives me some supplements to help balance what the antibiotics will do to my gut. I am now taking:
Kolorex & Probiotics (candida)
GI Caps (for the gut)
Vitamin D
Potassium/Magnesium
Mepron
Zithromax
Hydrocortisone
I feel like I have been in a dark tunnel for two years. Once in a while a very tiny shaft of light would burst through in the form of a day here and there of feeling good, or the love of my family, friends, and boyfriend. Along this journey, I have been so deeply depressed. Some days there has been no hope and I had no idea how I was going to get through the day. Now that I have a confirmed diagnosis I can finally see a big light at the end of the tunnel and have something good to move towards. I can allow myself the luxury of thinking what it will feel like to actually run again, or have the energy to get through a day. I know I still have a hard road ahead while I fight to recover, but at least now I am not in some infinite limbo. I have hope in my heart again for a future that I couldn't see for a long time.
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