In 2015, I developed a fungal-bacterial lung infection that triggered a cascade of other health issues that impacted every organ system. After four years of being told it’s all in my head, I was diagnosed with my first set of autoimmune conditions in 2019. Over the next four years, I would add a dozen more to my collection. Today, eight years later, most of my symptoms have resolved.
I’m not a doctor and I’m not qualified to give medical advice. What I can offer is my experience as a patient. I have years of experience with illness, misdiagnoses, torturous tests, useless remedies, and a handful of treatments that have actually worked. That’s what I would like to share: my symptoms, my diagnoses, and the things that helped me. From there, you can do some research and talk to your doctor.
Off the top of my head, these were some of my most common or debilitating symptoms:
- Cardiovascular – heart palpitations, extremely high resting heart rate, isolated diastolic hypotension, syncope, edema
- Neurology – small fiber neuropathy, migratory headaches, light sensitivity, poor memory, slow response time, brain fog
- Skin – erythema nodosum, hives, psoriasis, dry skin, cystic jawline acne
- Respiratory – reduced lung capacity, shortness of breath, deep coughing, violent sneezing that could be heard a block away, lung tightness, anaphylaxis
- Gastrointestinal – intestinal permeability, abdominal pain, low appetite
- Endocrine – hair loss, cold feet, fatigue, insomnia, nausea and vomiting, blood sugar spikes
- Ophthalmological – chronic conjunctivitis, dry eyes, blocked meibomian glands, reduced vision, blurred vision and floaters
- Muscles – exercise intolerance, lactic acid burning sensation after any activity, muscles giving out and requiring help to stand
Again, just off the top of my head, these are some of my diagnoses:
- Chronic fatigue syndrome (CFS)
- Hypothalamic-pituitary-adrenal (HPA) axis dysfunction
- Mitochondrial dysfunction
- Postural orthostatic tachycardia syndrome (POTS)
- Sjögren’s syndrome
- Adrenal insufficiency
- Polycystic ovary syndrome (PCOS)
- Isolated diastolic hypotension
- Mast cell activation syndrome (MCAS)
- Chronic inflammatory response syndrome (CIRS)
- Memobian gland dysfunction
- Alzheimer’s type 3
My Roadmap to Recovery
I was very ill for eight years. I spent the first two years in denial and continued to push myself. The next six years were spent researching treatments and seeing medical practitioners to determine what was wrong and how to fix it.
After seeing dozen of specialists, undergoing countless awful medical tests, trying hundreds of treatments, and spending tens of thousands of dollars, these have been some game-changers on my road to recovery.
My 14-Step Roadmap To Recovery
- Repair a leaky gut. In 2018, I spent a fortune to defecate into a hot dog tray and send it off to a lab. The results showed low levels of good gut bacteria, high levels of pathogenic bacteria, and inflammatory markers suggestive of intestinal permeability. This leaky gut was leading to debris in my bloodstream, and that inflammation pulled white blood cells and other resources away from more pressing issues, such as infection. I adopted the Autoimmune Protocol (AIP) diet to reduce inflammation and supplemented with prescription-grade probiotics, which I cultured to increase potency.
- Address malabsorption. The stool test also detected malabsorption so, even though I was eating nutrient-dense meals, the nutrients weren’t being captured by my body. So, while maintaining a healthy diet, I supplemented with high-quality multivitamin, multimineral, and antioxidant tablets. I also take a digestive enzyme from ox bile to ensure proper digestion and ensure I’m retaining nutrients.
- Balance blood sugar. While I’ve not had high blood sugar, I frequently experienced rapid drops and spikes within the normal range. As soon as I wake up, I take a tablespoon of cod liver oil. This signals to my body that I’m well-fed and staves off sugar crashes, and the associated energy crashes.
- Low-dose naltrexone (LDN). Naltrexone is traditionally used to manage alcohol or opioid use disorder by reducing cravings. However, it is sometimes used off-label in small doses and it has been found to help some individuals with chronic pain and fatigue. While the mechanics of action is not fully understood, some proposed pathways include blocking certain proteins, reducing inflammation, modulating immune response, or blocking pain receptors. It’s by prescription only and offer only through a compounding pharmacies, so you may need to see an integrative or functional private-pay physician to try LDN.
- Ensure quality rest. For years, I suffered from from crushing fatigue, insomnia and the tired-but-wired feeling. Along with allotting enough time for sleep, avoiding blue light several hours before bed, and sticking to a routine, I also found some supplements helpful. I take magnesium glycinate, taurine, lysine, and melatonin at bedtime, along with low-dose naltrexone.
- Allergy and antibody testing. An allergy test in 2018 showed extremely high IgG4 and IgE antibodies for dozens of foods that I regularly ate at the time. I eliminated eggs, gluten, glidan, casein, beef, avocado, and more. A physician also tested for several viral antibodies and my levels came back high, suggesting my body was still battling phantom viruses that had once crossed its path. Any physician should be able to run the test for EBV, HSV-6, and other viral antibodies. Many allergy tests are pricey, but some may be covered by your insurance if you work with an immunologist.
- Hormone testing. Throughout the duration of my illness, my cortisol level was flat. A saliva test showed that estrogen, progesterone, testosterone, and other hormones were way off from where they should be. Treatment didn’t work until until some of the physiological stressors were removed. I’m now on adrenal and thyroid supplements to help kick-start my body into producing these hormones in adequate levels on it’s own.
- Boost vitamin D level. Vitamin D3 is a hormone that plays an important role in autoimmune disease. If you raise your level to 80-100 ng/ml, autoimmune symptoms largely clear. I supplement with 20,000 IU per day to maintain levels in this optimal range. The standard range is 20-30 ng/ml, but this is not enough to keep autoimmune issues at bay. Note: Too much Vitamin D is harmful, so work with a doctor and check your level regularly. Also, Vitamin D3 should be paired with Vitamin K2 to help with absorption.
- Test and replete plasmalogens. Plasmalogens are neuroprotective nanolipids that deplete with age and stress. At age 33, I had the plasmalogen levels of an 85 year old due to the physiological stress my body has been through. Low plasmalogens are highly associated with cancer and other diseases, so I’m trying to raise my levels through supplementation.
- Clean your environment. The root cause of my illness was unknowingly living is a moldy home for the duration of my illness. Consider testing for mold, lead, asbestos, and other harmful materials. Prior to discovering mold, we had eliminated all harsh chemicals from out home, including candles, makeup, and cleaning supplies. Each exposure can add stress, if your body is sensitive.
- Test and repair mitochondrial dysfunction. Mitochondria are often referred to as the powerhouses of our cells. Without the power supply, the body has no energy for functioning. Supplements such as d-ribose and lecithin can support the mitochondria and restore functionality.
- IV glutathione. Glutathione is a potent detoxifier and antioxidant. I self-administer 2 grams twice per week intravenously, and have been medically cleared to titrate up to 4 grams. To go to a clinic is very expensive and most practitioners will administer a maximum dose of 1000 miligrams, which isn’t enough to make a dent. This probably isn’t a feasible for most people, but I’m adding just in case.
- Shoemaker protocol. I was exposed to high levels of indoor mold for a very extended period of time. Along with remediating (and then permanently leaving) the home, I took the binder Cholestyramine, ETDA nasal spray to break up the biofilm, and vasoactive intestinal peptide (VIP) spray to repair brain damage. After eighteen months of treatment, I’ve seen significant improvement of my symptoms.
- Anti-inflammatory supplements. On a daily basis, I take curcumin, CoQ10, pyrroloquinoline, cod liver oil, Vitamin D, Vitamin C, alpha-lipoic acid, methylsulfonylmethane (MSM), quercetin/bromelain, n-acetylcysteine, and resveratrol. There are a dozen more that I cycle in-and-out of rotation to determine where there are gaps and what I can live without. At this stage, my body is functioning better, but still requires some supplemental bolstering. If I go a week without these, I start crashing.
I’ve come to view my healing journey through the analogy of a raised planter. The first step is identifying that the space has been overcome with some type of disease. The next step is to clear out the bad soil and remove pests and rocks. Thirdly, we must repair or relay the bricks to create a secure container. Next, we must add fresh soil and nutrients. Finally, once the seeds have been sown, we should monitor and respond to harsh or changing conditions. Maintaining a garden is an ongoing processes with ebbs and flows in line with the seasons.
The human body is no different. It is a biochemical machine and requires certain nutrients in precise quantities to continue working as it should. The above are steps that I took to repair my unique physiology. They may or may not work for you. I also need to toss out the standard disclaimer: I’m not a doctor and this is not medical advice.
However, this is the article that I wish had discovered a decade ago. It would have saved me time, money, and grief. I hope that even one person who needs to sees this and finds an idea to present to their doctor.
Curious about what type of doctor to seek out, and how much things cost? Looking for reputable, effective supplement brands? If you have any questions, don’t hesitate to ask in the comments or send me a private message via the contact page.
Happy healing! You’ve got this, my friend.
I feel this down to my very core… I’ve had to do so many of these things over the last 10 years, but thankfully it’s been worth the time & effort. Hope you continue feeling better with your healing!
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Thank you, Carla! I feel the same way–it’s required a lot of time, effort, and money, but without health, what do we have? Thank you, I wish you all the best on your healing journey, also!
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Grateful to you for your detailed sharing, Erin. As you’ve said, everyone’s journey is unique and you’re allowing us the privilege of tapping into your hard-won discoveries and depth of knowledge…thank you. The specifics may be helpful to individuals in consultation with either professionals assisting currently – or new physicians and medical resources to be found…thanks to your encouragement. Sending love to you — for walking your path while also leave a trail for many of us to be informed and enlightened by. Oh — and I need to add this! 😉 “Wired but tired” holey moley! Yes. That’s a phrase I’ve not heard before but wowzers…do I ever relate to it. Hugs! 🥰
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I figured things out bit-by-bit, gradually over many years. It’s tricky because symptoms and diverse and we’re referred to a dozen specialists, rather than asking what single thing might be causing the diverse set of issue. I hope that someone who needs it stumbles across this and it helps them make a connection or discover something new. The “wired by tired” is the worst… crushing fatigue paired with insomnia makes no sense, but alas… haha! Big hugs to you, Vikci! 🥰
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😘you are amazing!😘
Wow, what a journey of health, learning and troubleshooting you’ve been on. I love the metaphor of the raised planter. Thanks for sharing!
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Thanks, Wynne! So many people are looking for a pill or similar quick fix but, unfortunately, the body is not quick so simple.
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First, I had to laugh over defecating into a hot dog container (well said!). But after the laugh, I was amazed at what a gift your post is. Truly! And I especially loved this part, “Maintaining a garden is an ongoing processes with ebbs and flows in line with the seasons.” Oh, so true, with our health. My only “complaint” about your post is that it’s not being published in a large magazine or periodical. There’s so much fantastic information and help contained in it! Thank you, Erin!
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That stool test was such a awkward one, so it has earned a chuckle or two. Thank you for the kind words, Kendra! This is the type of thing I wish I had come across, so I hope even just one person who could benefit stumbles across it and can implement something to positively impact their lives. 🤞
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