Throughout my 32 years of life, I’ve always been kind of weird. For the last six years, I’ve navigated up and down the illness spectrum–sometimes bedridden and sometimes passably semi-functional. Recently, new clues are making sense of the mess and I am way more excited than I should be about my likely genetic fuckery.
A 2021 cardiac health lab test showed significantly elevated levels of interleukin-16, a pro-inflammatory cytokine. My white blood cell count is nearly 10 times higher than it should be, pointing to infection, inflammation, or an immune system disorder. I don’t seem to have an acute infection, so we can rule that out.
That same test showed significantly elevated levels of Fas and Fas Ligand, two molecules involved in the regulation of cell death. During a physiological immune response, programed cell death (apoptosis) deletes potentially pathogenic autoreactive lymphocytes from the circulation and tissues, limiting tissue damage inevitably caused by immune responses.
Taken together, my immune system is going haywire and producing way too many helper T cells. My body views the rowdy crowd as a potential malignancy and sends the out Fas (“the death receptor”) to provide a cell with specialized cellular machinery to kill itself. Fun!
This sounds like an immune system disorder, right?
I was drinking Rice Dream decades before non-dairy milk became trendy. I refused to eat pizza, chicken nuggets, spaghetti, cake, and soda; instead, I begged for salads and vegetables. I recall spending recess at the library reading because playing soccer in the glass made my legs itchy. The elastic bands on underwear and socks gave me rashes. I refused to put Band-Aids on my boo boos because the adhesive was itchy. I would get a rash if I was in the sun for more than a few minutes. When my aunt took me to get a facial before prom, my face remained swollen for days. Like I said, I was kind of a weird kid.
A 1994 allergy test shows severe allergies to nearly every food and plant. I vividly remember the scratch tests, the reactions extending far beyond the measurement device, and how the itchiness didn’t go away for a week. I don’t remember being told I had allergies or processing that I should be careful. I just considered myself a picky eater, albeit a picky eater that preferred rabbit food over sugared carbs.
A repeat allergy test in 2019, this time using a lab that measures IgG4 using the ELISA method for the assessment of delayed food allergies. One the 200 items tested, 30% items showed a severe allergic response and 30% showed a moderate response, and 20% showed a slight response. My doctor advise I cut the slight response line in half and stick to the bottom half. About 25 of the 200 foods were safe. I had an allergic reaction to my birth control, which I first blamed on copper and than polyethene glycol.
Around that same time, a stool test showed high intestinal permeability (aka leaky gut), low levels and varieties of good bacteria, and high levels of pathogenic bacteria. The doctor theorized that the allergic reactions were due to leaky gut, so I put the allergies on the burner.
A recent lab test show that I have no antibodies to the 14 tested pneumococcal markers, suggesting that I could have selective antibody deficiency with normal immunoglobulins. This basically means that my body doesn’t recognize polysaccharides as a threat. Considering I’ve had pneumonia at least 5 times, including just 6 years ago, it seems unlikely that I have never been exposed. Today, I’m getting my pneumococcal conjugate vaccine, a shot typically reserved for the elderly. In a month, we’ll see if I develop antibodies after the confirmed exposure.
If I don’t show antibodies, the valley fever suddenly makes sense. I had coccidiomycosis and pneumonia at the same time, so if my body was unable to recognize and fight the pneumonia than the body would be weakened enough to allow the proliferation of the fungal infection. Affected people have many sinus and lung infections and sometimes symptoms of allergies, such as a chronic runny and stuffy nose, a rash, and asthma. If the shoe fits…
So, it seems possible that my immune system fails to recognize some pathogens while aggressively destroying others. I have always joked that I never get sick, but when I do I end up on the hospital. Maybe that’s more true than I realized.
In reviewing the commonalities across six years of lab workups with just a handful of abnormalities, everything seems to align with an autoimmune disorder. How likely is it that I have independent and inexplicable neurological, endocrine, immunological, pulmonary, sleep, gynecological, and infectious disease issues? The more likely scenario is that cells that reside across all organ systems are misbehaving and attacking the wrong target–me. In early 2020, I was diagnosed with chronic fatigue syndrome and, with the diagnosis, I was able to make diet and lifestyle changes to reduce the most debilitating symptoms. After five years of being a foggy-brained, depersonalized zombie, I feel normal. When I feel tired, it feels like didn’t get enough sleep rather than feeling like I don’t have the energy to sit upright or keep my eyes open.
I often listen to podcast on health topics, simply to keep learning. Back in February, I heard an episode on mast cell activation syndrome and histamine intolerance. Throughout the entire hour, I kept thinking it sounds just like me. Interestingly, I started to improve when I began a low-glycemic paleo diet, which has significant overlap with the low-histamine diet. My dietician also prescribed anti-oxidants and natural immunomodulators like quercetin.
Without knowing exactly what we were working with, we were able to reduce inflammation in my body and modulate the immune response.
The Final Pieces
There have been many points over the last six years that I’ve felt confident that we found an answer and could place the final pieces of the puzzle. Here I am again, feeling confident and hopeful. I may be incorrect, but I so am grateful to continue making new discoveries and inching closer to a diagnosis, and from there some resolution.
I spent four years suffering tremendously, being gaslit by doctors who interrogated me endlessly and questioned my motives. I struggled to keep up with work and maintain friendships, and blamed it on getting older… because arthritis and dementia set in in one’s early-20’s, right?
Today, I have a team of wonderful, open-minded doctors who listen to me and take me seriously. My boyfriend is amazing supportive–sometimes annoyingly so, but I know that he’s only looking out for me and trying to help. My parents and relatives are helpful. Everyone here is incredible, as are the kind strangers across the web sharing their stories and tips.
My dietician often tells me, “You’re moving in the right direction, at the right pace.” Due to high levels of aluminum, cadmium, and lead in my body, my body needs to detoxify slowly so an not to overburden my system. Two year into the gradual process, I am seeing the fruits of its labors. I think about this topic often lately: slow and steady wins the race and, in life, the reward is thriving. I believe that I can get there and that, whatever genetic mutations I may be facing, we will be able to either fix or manage them. I have felt like absolutely shit for the last month, but I feel overwhelmingly hopeful.