Igenex Test Results - Babesiosis Confirmed

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.

The Wellness Quest continues, I am a Hermit Crab

I see Dr. W, (the gynecologist/holistic doctor) for a follow up to get my test results. It is confirmed from my cortisol (stress hormones) and DHEA levels that I have adrenal gland exhaustion/chronic fatigue. What this means is that while in normal people their "fight or flight" response regulates after a threat goes away, my response is in constant "fight or flight" and never regulates. This explains beyond the Q fever why I had insomnia, because cortisol also goes up and down during a typical day, but for me it stays elevated when it is time to go to sleep and keeps me awake/wakes me up in the middle of the night! More information on cortisol in the links to the right. There are also other factors working here; my magnesium levels are low (this can contribute to migraines and headaches as well as inflammation), and my Vitamin D is low. I am relieved but also angry when I get these test results. I was researching all of these things a YEAR ago, and asking various doctors about this. However, many conventional doctors do not recognize adrenal dysfunction if you have a test result that is not very low out of normal range, or very high. I am somewhere in the middle of what is considered "normal," let's say the criteria is 100-1000, and I scored 750. Although I didn't score 50 or 2000, in the range of 100 to 1000, 750 is HIGH. Therefore, other docs didn't discuss any kind of adrenal dysfunction, but that is what I have been dealing with all along, and then Q fever came along with a nasty bacterial infection and I was SCREWED.

Now that I know what I am fighting, it is time to trust that the information I have is the correct information and that I must go with the flow and take the supplements I am given. I am now on NINE different supplements, some of which I take 3x/day. In addition to the supplements I was given last time, I am now also given Vitamin D, Magnesium and Phyto Caps for Adrenal Glands. It's a lot to remember to take in a day, but I say BRING. IT. ON. One silver lining in this is that my progesterone and estrogen levels are actually normal, so I am grateful that I don't have to worry about adding that to this already delicate mix.

I've been taking the supplements from my last visit for about 3 weeks now, and already I see a slight difference. The nausea that I feel all of the time is starting to dissipate, and I haven't felt sick from food for about 2 weeks. I ovulated last week and for the first time in a LONG time I had no inflammation in my neck, no tension headache and no toxic feeling in my uterus. Hallelujah! I did get a migraine, but it was easily dispelled with Zomig nasal spray. Dr. W. surprisingly tells me that I need to stop exercising. She is the first doc to say this. Her point is that vigorous exercise actually raises the cortisol levels and that is something I can't do right now. I am to take long, slow walks and to do very gentle yoga, and that is it. She also recommends that I start a meditation practice, because a major part of the cortisol issue is stress and negative emotions. She is not the first person to recommend meditation, so it's time I listen. It's amazing that always worrying about the really stupid, small things in life contributed to making me so sick.

Right now I feel like a hermit crab between shells. I am no longer the person I had become when I was living in Los Angeles, so I don't identify with my past self at all. However, I have no idea who I will be in the future. I am that vulnerable hermit crab, growing but not knowing where I'm going to end up. My therapist told me that part of the problem is that I have always identified myself through whatever job it was that I was doing. And now I have no job, nor any prospect of what it is I want to do, and therefore I feel lost and with no identity. She says when people say, "oh, what are you doing?" I have to be okay with saying, "nothing." It is in the letting go that I will find myself.