Four years ago this month, I was forced to spend a full month in bed while assaulted by a vicious cough, painful aches and terrifying hallucinations. I lost 16% of my body weight and gained a permanent scar on my lung. I was told it sometimes takes years to fully recover, so I practiced patience with my body and did I all I could to regain my old life.
My body was slow to bounce back, but I was gentle and understanding. A year passed, and then two. During year three, the realization hit me all at once: I am not getting better. In fact, I was quite certain that may health was gradually declining.
Test after test showed normal results. A dozen different doctors insisted that I was experiencing “residual fatigue” from the initial infection. The only anomaly was consistently high level of the cocci antibody in my bloodstream, levels consistent with dissemination to the brain, bone or soft tissues. Yet, nearly every doctor shrugged and referred me on to the next specialist. I was a complicated case and no one wanted to invest their efforts into teasing me apart.
After four years of struggling through my days, answers are slowly coming to light. My gut is a mess. My intestinal lining is highly permeable, allowing foreign particles to slip into my bloodstream and trigger inflammation. I have an overgrowth of “bad” bacteria and my candida level are 13,000% higher than acceptable levels. I have dozens of severe food allergies, along with some major hormone imbalances.
Last month, I spit into four plastic tubes across sixteen hours before shipping the frozen saliva to a far-off laboratory for testing, along with a rating of my symptoms. And then I waited.
Though I have an appointment with integrative physician next week where we’ll discuss the results together, I couldn’t help but sneak a peek at what’s going on inside my body. With some great diagrams and detailed explanations in the lab notes, along with insights from an endocrinologist friend, it’s become clear that my hormones are not happy.
My levels of progesterone, testosterone and DHEA-S are low, while my progesterone-to-estradiol ratio is high. But what does all this mean in layman’s terms?
Low progesterone is associated with luteal phase deficiency, which basically means it’s near-impossible for me to become or stay pregnant. The ovaries should be releasing the hormone and my uterine lining should be responding appropriately, but something’s gone away. Low progesterone can be caused by endometriosis, polycystic ovary syndrome and thyroid disorders. It also puts me at increased risk of hormone-related cancers. According to the endocrinologist, there is a 100% chance that I’m infertile right now and–for better or for worse –a good chance the damage to that department is permanent. (Sorry, little sis, the pressure is on you now!)
My DHEA-S levels are low for my age, hinting at HPA axis dysfunction and low adrenal function. The hypothalamus, pituitary gland and adrenal glands are meant to work in harmony; but, like an orchestra with one off-key instrument, a single kink in the system can throw everything off. In 2015, one debilitating infection flipped my physiological stress response into high gear; these results suggest that my central stress response system hasn’t clocked out in 48 months. Low DHEA-S may also contribute to low androgen symptoms, serving as a precursor to low testosterone.
Testosterone is an anabolic hormone essential, in both male and females, for energizing the body, supporting memory, regulating immunity and maintaining structural tissue. Low testosterone is consistent with androgen deficiency, pointing to problems with the pituitary gland and hypothalamus. Interestingly, an MRI found a pituitary tumor over a year ago, but the doctors shrugged it off. Low levels of testosterone are correlated with low bone mass, putting me at increased risk of osteoporosis. The lab manager’s notes recommended that I begin annual bone density testing.
While my estradiol levels are normal, a relative excess of estrogen compared to the low progesterone often leads to a functional thyroid deficiency. When coupled with the high levels of beta-glucosidase, this estrogen dominance confirms the results of my gastrointestinal test: my liver is not eliminating toxins, and excess estrogen is thus being recirculated through my bloodstream. I currently have a copper IUD placed and research has shown that cooper and estrogen tend to “one up” each other, thereby boosting levels of both toxic-in-excess chemicals. Supposedly, estradiol varies wildly, so I can take this reading a clue, not a definitive answer.
My cortisol is normal throughout the day; however, a significant number of self-reported symptoms are associated with high and/or low cortisol levels, so it’s likely that my adrenal glands may be overworking to keep up with the demands of a stressor–in my case, the pathogenic infection. Additionally, I was taking low-dose natrexone at time of testing, which helps balance out cortisol, so I don’t know whether the drug may have skewed the results. According to the lab manager, the chronically overworked adrenal glands eventually lead to HPA axis dysfunction, which my DHEA-S levels suggest I’ve already reached. According to the endocrinologist, the next step is to undergo ACTH stimulation, a test used to diagnose or exclude primary and secondary adrenal insufficiency, Addison’s disease, and related conditions.
Oh, and while she was at it, the endocrinologist glanced over my allergy test and let out some explicits. Apparently my IgE and IgG4 response are far stronger than anything she’s ever seen before. Based on the antibody response, eating eggs should cause asphyxiation or organ failure. Yikes!
Transforming Actions into Answers
While the results seem daunting, I’m so grateful to finally have someone say: “Your body’s a mess and it’s not your fault. All your symptoms are real; you’re not crazy.” The endocrinologist said my results are indicative of chronic fatigue syndrome, adrenal insufficiency and autoimmune disease. She insisted that the high-dose anti-fungal medication I was one for six months year did far more damage than good. Finally, parroting what the leading valley fever specialist said a year ago, the endocrinologist suspects mitochondrial dysfunction to be the culprit. Doctors don’t know exactly what that means, what causes it or how it treat it, but it’s… something.
The endocrinologist recently left her medical practice to teach and was thrilled to hear I’d abandoned traditional medicine in favor of integrative medicine. “It’s the future of medicine,” she insisted. I believe her.
I still have a long way to go in my diagnoses and recovery, but all the pieces are finally coming together in a way that makes sense. And, even more importantly, it seems that many of the data point to tangible actions. I won’t see my integrative doctor until next week, but I know that I’ll walk out of that appointment informed, empowered and equipped with with a clear list of action items to help rebuild the parts of my body that are broken.
I’ve said it before and I’ll say it once more: if you’re experiencing any type of mysterious ailment that tradition medicine hasn’t been able to resolve, considering looking up an integrative physician in your area. Full disclosure, it’s not cheap; I’ve spent $4,500 in just three months on appointments, diagnostic and supplements. Unfortunately, insurance won’t cover a dime. However, it’s so refreshing to finally feel that we’re making progress, no matter how small the steps may be! After four years of misery, uncertainty and that devastating face a doctor makes when they think you’re faking it, I have a professional on my team who is eager and willing to help me cross the finish line.
Hopefully there’s nothing but good news to come!