01 Mar My Healing Journey
Lyme is such a thief, and it goes undetected for so long because no one is looking for it. This is my healing journey story that spans nine years. It’s part relentless self-advocacy, Lyme, MCAS, and how it all changed me. It’s been quite a journey. Thanks for coming along for the ride.
Over the course of 7 years, from 2013-2020, I saw: 5 primary care doctors, 2 neurologists, 5 OB- GYN, 1 gastroenterologist, 2 urologists, 1 allergist, 5 dermatologists, 5 ER doctors, 3 functional medicine doctors, 1 ophthalmologist, 1 naturopath, 4 physical therapists, 7 acupuncturists, and 2 craniosacral therapists on a quest to find answers about my health. I’m not a layperson. I wasn’t lost in the healthcare system. I have been a nurse for almost two decades, and know healthcare from the inside out. I researched every doctor before scheduling an appointment. I prepared a list of questions and concerns for each doctor’s visit. In short, I did my due diligence as a patient, and I expected the healthcare providers I saw to do theirs. I left no stone left unturned on my quest for answers about my declining health, seeking answers from experienced and highly regarded doctors as well as holistic healers.
I received 15+ Botox injections to my scalp every three months, occipital nerve blocks to the base of my skull to alleviate debilitating migraine pain and occipital neuralgia (deep and persistent pain to my scalp), an endoscopy, CT scans, MRIs, numerous ultrasounds, emergency room intravenous migraine cocktails and oxygen support, and countless lab tests on my quest for answers. All the while I continued to work as a neonatal intensive care nurse at the bedside.
Not one doctor was able to determine the root cause of my health problems. For starters, most weren’t looking for Lyme Disease. Medications served as bandaids, and I was faced with the stark reality that the medical establishment I’d served for so long had failed me.
To be clear, my story is no different than hundreds of thousands of Lyme patients who struggle for years before they are accurately diagnosed. It isn’t just Lymies who suffer this way in our fragmented healthcare system, but most chronic illness patients. Sure, they receive bits and pieces of health information along with individual diagnoses after seeing specialist after specialist, but no one is trying to piece together all of these pieces of valuable information to get to the root of their health problems and heal them. No one is trying to solve their health puzzle. Instead, drugs are thrown at symptoms as body system after body system collapses.
I hiked regularly in the Bay Area and had a little chihuahua that slept in my bed when odd symptoms began to appear in 2013. Over the years, I would address one symptom, only to have another emerge months later. Sometimes I’d feel relatively ok for months at a time. My health improved somewhat after being treated for gut dysbiosis (gut bacterial imbalance), worsening migraines, and interstitial cystitis (Painful Bladder Syndrome). However no one could pinpoint the root cause of my growing list of ailments. And I never felt fully well, like my old self.
In 2016, I saw a naturopath who tested me for Lyme Disease as part of my new patient workup, using the standard CDC-recommended two tier testing system: ELISA and Western Blot. I read my results over and over. Negative. Negative. Negative. At the time, I didn’t know these 2 labs are only about 50% accurate. I truly believed Lyme Disease had been ruled out. I’d tested negative for it, had never seen a tick, felt a bite, or had a bull’s-eye rash. And so I continued on my quest for answers about my growing list of symptoms, searching tirelessly for a healthcare practitioner who could help me. Months turned into years, and not much changed other than my worsening health problems.
My health was in a downward spiral by the start of 2020. I had given birth to a healthy baby in 2015, and had experienced a gradual and steady rise in the intensity and severity of my symptoms. I still didn’t know what was causing my decline, I just knew I needed answers. A dear friend referred me to a San Francisco integrative doctor who specializes in treating complex cases. I scheduled an appointment, and in the meantime scoured medical journals and fellow patient’s stories hoping to find a clue about my ailments. I came across a journal article that detailed Mast Cell Activation Syndrome, a newish medical diagnosis. My sudden onset rashes, sensitivities, food intolerances, and allergies were starting to make sense. I felt a flicker of hope as I learned more about the disease. Before booking with the integrative doctor that had been recommended to me, I researched his clinical education and certifications. He was one of the few doctors in the Bay Area who had received MCAS training and certification, and I couldn’t wait to discuss my symptoms with him. My body was fighting so hard. My immune system perceived everything as a threat. Overactive mast cells translated into a myriad of symptoms in every body system. In short, my body was on fire.
A Little More In Depth
At my first visit with my new integrative doctor I was diagnosed with histamine intolerance. I agreed to test for MCAS, and was subsequently diagnosed with the disease based on clinical symptoms as all of my labs were within normal limits. I was both terrified about what this meant for my future, and grateful to finally have answers. I could only tolerate 5 foods: grilled chicken with sea salt, plain white rice, kale, broccoli, and blueberries. Anything else would cause severe migraines, rashes, facial flushing, insomnia, anxiety, generalized inflammation, swelling, depression, constipation, and much more.
My doctor started me on Ion Biome Gut Health to decrease food sensitivities and intolerances, and instructed me to eat a low histamine diet. We tried OTC antihistamines (H1 blockers), Pepcid (H2 blocker), and Ketotifen (a mast cell stabilizer). My body reacted to each one with severe migraines along with gut symptoms. We weren’t clear if it was the actual drug causing the reaction or my mast cells reacting to the excipients in each drug. As a last resort my doctor ordered cyproheptadine, a first-generation antihistamine, for me at my local compounding pharmacy. Thankfully I tolerated it and got some relief. Instead of taking one or two doses a day as is the norm, I was taking four doses in order to tolerate a handful of foods, moisturizer, and daily life. At this point I was so sensitized that even synthetic fabrics and some jewelry would cause allergic reactions.
The following month I met with my doctor again, and shared that I was continuing to experience so many awful symptoms, despite having been able to add a few more foods back to my diet. He specializes in Lyme, and said, “I know you had a negative test back in 2016 (ELISA and Western Blot), but one of these bands is concerning and I’ve seen your symptoms before. They’re so broad and odd. I suggest we test for Lyme to just be sure that isn’t what we are dealing with.” I was frustrated and devastated. Was Lyme at the root of all of my symptoms for the past 7 years? I worked in a hospital as a nurse during that time helping others heal. I walked into a hospital for almost 20 years stacked with people that could have helped me when my health began to crumble, but they couldn’t because the system is not built to diagnose or treat Lyme (that’s a whole other blog post). If you are a deep believer in science, and have placed your faith in science both for yourself and/or your patients time and time again, then you understand my pain, confusion, and disappointment.
I agreed to test. A few weeks later I received my test results: positive for Lyme Disease. My world as I knew it broke into a million pieces. How long would I have to treat? Could I heal? Was there really no gold standard for treatment, or a cure? My nurse brain couldn’t begin to process this, and as a patient I felt scared, alone, powerless, and betrayed by the system I trusted.
My overactive immune system finally made sense. I had been fighting a systemic infection for 7 years. It invaded every body system, crossed my blood brain barrier, made my gut a hospitable environment for pathogens, and demolished every corner of my life. Lyme Disease took my health, my ability to be the mother I’d always hoped to be, my passions, sense of self, and my sanity.
Lyme Treatment Begins
My doctor laid out Lyme treatment options, and I chose the most aggressive one: pulsed oral and intravenous antibiotics. COVID was just ramping up at that time, and I was terrified of what that meant for my compromised immune system, but I double-masked and went in weekly/twice weekly for treatment. The hours became days, and the days became months. My determination to heal was fueled by glimpses of my old self. My body calmed a bit with the help of a low histamine diet, medication to treat MCAS, and a decreasing Lyme bacterial load thanks to antibiotics.
Treatment was a roller coaster. Lyme bacteria were dying, and my body was not able to clear them quickly enough. The toxins they secreted as they died drove my body and mind to the brink. I was pre-dosed with intravenous Benadryl before every antibiotic infusion, but my face would still break out in a hot, red and itchy rash for days. My body was so inflamed, and my generalized swelling was visual proof of that. If my mast cells could be any angrier, they were. I gained a substantial amount of weight as my gut microbiome was wiped out by antibiotics. My mast cells secreted hundreds of chemicals as they degranulated each time they sensed danger, causing an inflammation cascade each time.
The two amazing infusion nurses I saw twice weekly managed to get an IV in each time. They were cheerful, encouraging, and never sugarcoated a thing. They’re MVPs, and they will always have a special place in my heart.
Through it all I tried to show up as a mom, and as a wife. Looking back, I don’t know how I did it. I had some very dark moments. My daughter was the bright shining beacon that pulled me through each time. I simply could not have healed without my husband’s and daughter’s love and support.
Mast Cells On Fire
During the fall of 2020 I gained twenty-six pounds in one month. My mast cells were doing their best to communicate how desperate my body was for help. With each infusion, each herx (detoxification reaction), each new supplement, my mast cells would react and degranulate. The chemicals they released as they degranulated were affecting my ability to do the bare minimum daily. One of the chemicals they release is histamine, a mediator used by the body to raise the alarm and activate the immune system. I needed to continue to treat Lyme disease, but I also needed to have some quality of life. I shared with my doctor that my mast cells needed more support, and that I needed something more to calm them. I felt my body could handle a little more by this point.
He agreed and ordered compounded Cromolyn, and it was quickly prepared by my local compounding pharmacy. My mast cells breathed a sigh of relief, and my body stabilized a bit. I was able to add in so many more foods as it calmed my overactive immune system. Through all the highs and lows of treatment, I got to experience some big joys: seeing my daughter reach big kid milestones, family fun in between medical appointments, reintroducing maple syrup, shredded coconut, beans, and a wider variety of fruits and veggies.
Turning to SOT
In the fall of 2020, I retested via Igenex to gauge my progress as I neared one year of antibiotic treatment. I received my Lyme results a few weeks later: positive. The persisters, Lyme bacteria that can survive the antibiotic onslaught, were still present. My treatment options were to continue treating with a monthly antibiotic dose, try a psych drug that is used to treat persisters but has potentially severe side effects, or SOT. I chose SOT. SOT utilizes short RNA segments to block the expression of gene segments needed for Lyme to replicate and survive. It creates a shutoff key for the specific tick-borne disease identified for each patient. It’s a short infusion that is accompanied by Pepcid and dexamethasone.
My doctor had begun the process of offering Supportive Oligonucleotide Therapy (SOT), but wasn’t quite ready to roll it out yet, so I continued on antibiotics until December 2020. In December, I stopped taking antibiotics for three weeks to test via Paldistpot, which tests for the presence of bacterial particles rather than antibodies which do not always signal a current infection. My blood draw was sent to Biocentaur. Biocentaur is a specialized lab in Europe. I had to use this lab because the CDC doesn’t recognize Chronic Lyme as a valid diagnosis, so a lab like this could not operate within the confines of FDA requirements. As a result of Chronic Lyme Disease not being viewed as a legitimate diagnosis, SOT for Lyme isn’t covered by medical insurance in the U.S.
Not much more than a 30-day course of doxycycline is covered by insurance companies for the treatment of Lyme. The treatment recommendation for Chronic Lyme vs. acute onset Lyme is exactly the same. This does not make any sense clinically.
Patients are forced to cover all of their expenses out-of-pocket. I quickly wiped out the savings I’d worked so hard for during my nursing career. Our savings as a family picked up where my personal savings ended, as my ongoing medical expenses continued to grow. I am grateful that I was able to pay for Lyme treatment, but also want to acknowledge that it is a privilege to be able to do so. Healing from a bacterial infection should not be a privilege. Healthcare is a human right.
SOT felt risky. I wondered if it could actually work as there are no long-term studies demonstrating its efficacy against Borrelia bacteria. I acknowledged how wild it was that my blood sample was being sent to a lab in London, which would send my results to a lab in Greece where my personalized mRNA solution would be prepared. I decided if it was a way out from the hell I was still living in then it was worth the risk. It’s the closest thing to a cure for Lyme, and what I was counting on. It isn’t a new treatment. It is used to treat cancer here in the U.S., along with EBV, herpes, and hepatitis.
Once my SOT labs were drawn, I immediately restarted oral and intravenous antibiotics. Many of my Lyme symptoms had returned. My mast cells were on fire again, and I needed to calm the storm. My body welcomed antibiotics, and I was able to get back to baseline pretty quickly. And so we waited.
Parasites, Mold, and Heavy Metals
As I waited for my Paldispot results, I read countless medical journal articles about the connection between chronic illness, gut dysbiosis, and heavy metal and mold toxicity. It became abundantly clear that I needed to rule out and treat other health problems that might be making my body a hospitable environment for Lyme to thrive in. I asked my doctor to test for heavy metals, mold, and parasites. I wanted to ensure we tackled every health problem that had been allowed to thrive because of the immunosuppressive effects of tick-borne disease, before I received SOT. I wanted to give my body and SOT the best shot possible. I’m so grateful to have found a doctor that truly believes in a collaborative patient-doctor relationship.
Weeks later, my lab results began to trickle in. I tested positive for heavy metals and mold. A retired gastroenterologist who owns his own lab and looks at multiple slides vs. one at conventional labs, diagnosed me with parasites. Over the course of four years I had tested for parasites via conventional labs, GI MAP x 2, and Doctor’s Data, yet none of these costly and widely-used tests detected them. I felt like I’d unlocked another layer of gut issues.
We all have parasites, but it’s when our immune system is compromised that they are allowed to thrive. Parasites feed on mold and heavy metals, and Lyme bacteria hide in parasites. Mold, once in the body, becomes a parasite. It was a vicious cycle that was making my body a hospitable place for Lyme to continue to grow in, and I needed to short-circuit it.
I asked my doctor for the most comprehensive and broad treatment option. He suggested Klinghardt’s Parasite Protocol. I agreed to treat using this approach. Treatment entailed taking six courses of back-to-back antiparasitics:
Pyrantel Palmitate x 2 courses
At this point I knew parasite treatment was going to overlap with SOT. With our upcoming move to the East Coast in motion, I didn’t really have a choice. If I could heal, if I could have my life and health back, it would all be worth it. I focused on that, manifested it, and pushed through weeks of multiple doses of antiparasitics daily. I also continued to treat Lyme with antibiotics. My body was at a breaking point, and if it hadn’t been for the focused and experienced skills of my San Francisco acupuncturist week after week, I don’t know how I would’ve made it through.
SOT IS IN
Weeks later my infusion arrived, and my infusion appointment was scheduled. I was so hopeful. I hoped with every fiber of my being that this would be my last Lyme treatment. On February 10, 2020, I received SOT. When the infusion ended, I remember saying, “SOT is in!” I’ll never forget that day.
Weeks 2-10 after SOT were a nightmare, though no worse than the die-off I’d experienced the prior year during antibiotic treatment. For the next few weeks some Lyme symptoms worsened. My mast cells, which had been in a pretty calm state prior to the SOT infusion thanks to antibiotics, raged. That’s the best way to describe it. They battled mRNA molecules that were trying to save me. They battled the toxins Lyme bacteria and parasites released as they died. They fought and fought tirelessly to protect me, and wreaked havoc in my body over and over again. My body swelled even more, I gained more weight, and I battled anxiety and depression due to the debilitating effects of MCAS.
My mast cells did their best to protect me by releasing hundreds of chemicals each time they perceived danger. This deeply affected my mental health. I felt odd sensations in my body, like a gentle but persistent hammering in my legs. I hoped this was the synthetic mRNA from the SOT infusion attaching to Lyme bacteria and preventing them from replicating. I visualized it. I begged the universe to let it be that. Six weeks after receiving SOT I had my first lab drawn to determine if SOT had downregulated Lyme and perhaps allowed a dormant tick-borne infection to resurface as my immune system came back online (tick-borne disease suppresses the immune system). This is standard testing required 6 weeks after SOT is administered.
A New Beginning
My Paldispot lab results arrived a month later, and to my surprise they showed no tick-borne disease in my blood. I could hardly believe it. Could I trust the results? Sure I felt better, but no infections after only 6 weeks? I suspect one year of pulsed antibiotics greatly decreased my Lyme bacterial load, and lessened the kill burden on SOT. I was shocked, but ecstatic.
I wanted to sink into remission, and enjoy the peace and calm that came with seeing it in writing after living in fight-or-flight for so long. But my mast cells were still overactive. I was still so swollen, couldn’t shake the weight, and I couldn’t wean off my antihistamine or mast cell stabilizer. I was doing my best to continue to safeguard my fragile gut post-antibiotics with spore probiotics, Ion Biome Gut Health, vitamin D, and prebiotic fiber. I was tolerating so many more foods, but my gut and immune system were still clearly unwell. These symptoms intensified after I was exposed to mold in hotels during our move to the East Coast.
We had just moved cross-country, and I was struggling to find an acupuncturist that knew how to treat my post-Lyme body. I found someone locally thanks to my San Francisco acupuncturist, and I felt relief after each acupuncture session. However, I wasn’t making progress. A local Maryland Lymie that had become a friend via social media referred me to her Doctor of Oriental medicine (DOM), and the next chapter of my healing journey began.
I walked into her office with an exhausted body that had fought against Lyme for seven years of misdiagnosis, one year of oral and intravenous antibiotics, SOT, and everything in between. She acknowledged the depleted condition my body was in. She diagnosed me with gut dysbiosis, blood deficiency, stagnation, mold and heavy metal toxicity, and years of deep and painful trapped emotions as a result of battling chronic illness. She agreed to treat me holistically. She’s also a former scientist, who understands both Eastern and Western medicine. I needed her unique approach.
She was the 48th healthcare practitioner I’d seen on this chronic illness path. I did my best to trust her, and surrendered to the journey a little more with each passing week. I started taking baby doses of gentle herbs immediately, like Burdock Root to nourish and stabilize my gut. I could only tolerate taking herbs at night or migraines and interstitial cystitis flares would ensue. I did just that.
My Body Returns To Me
You can’t restore a body by throwing more medications at it, so I committed fully to Traditional Chinese Medicine. I had nothing to lose. I saw my DOM weekly. I had moments of doubt, but I talked my body into trusting her approach whenever doubt creapt in. I surrendered to her week after week for electro-acupuncture, cupping, and eventually moxa.
Only a couple of visits in, I started to see and feel the results. My body was slowly starting to relax, to take in that it didn’t have to fight anymore, that it could trust. Weeks passed, then months, and she added Classical Pearls herbs to really ramp up my treatment and battle gut dysbiosis more effectively.
Eight months later I can honestly say I am a different person. My gut health has improved by leaps and bounds, I sleep like a baby, and my mast cells are calmer and much less reactive.
I have healed so much, and still have a ways to go in healing and restoring my gut, which will allow my mast cells to fully calm. I have weaned my MCAS medications as tolerated, and have accepted it is not yet the season to fully wean off of them. I fully believe that once my gut has healed fully, I will put MCAS into remission.
MCAS: What I did to heal
As you know, I treated Chronic Lyme for one year (with oral and IV antibiotics), which made it a bit of a free fall with MCAS. I couldn’t stop treatment, and my mast cells were easily triggered by die-off, medications, SOT, and pretty much everything else. This is a close-up of my healing journey. This is not medical advice. Please consult your healthcare provider for all health concerns.
My mast cells calmed with a multilateral approach. I am by no means a purist, and I know that is what has allowed me to heal to this point. Once diagnosed with MCAS, I immediately started taking antihistamines twice daily, and eventually a mast cell stabilizer:
Zyrtec Children’s Allergy (H1 blocker): my favorite as it has less excipients than the adult formulation (preservatives, coloring agents, and fillers), is lactose-free, and has been the most effective at preventing symptoms. Excipients are a migraine trigger for me, so I try to avoid them when possible. It’s important to note that while histamine blockers are great at preventing histamine from binding to H1 and H2 receptors, there aren’t histamine blockers for H3 and H4 receptors. It is impossible to completely eliminate histamine in the body, so the goal is to decrease external factors that contribute to a rise in histamine. This is why it was key to use a multi-pronged approach to decrease external histamine triggers.
Compounded Cromolyn (prepared by a compounding pharmacy without excipients): the mast cell stabilizer that allowed me to reintroduce so many foods.
Low Toxin Beauty & Self-care
The skin is the largest organ of the body, and what we apply topically is absorbed systemically. Absorption of topical chemicals can be a trigger for mast cells. I switched to cleaner and gentler beauty and self-care products to minimize these triggers:
Acure Ultra Hydrating Eye Cream
John Masters Organics Shampoo and Conditioner
Ilia Beauty Mascara & Eyeliner
Skinmedica Ultra Sheer Moisturizer
I catered to my gut, as there are mast cells present in all layers within the intestinal tract. I treated my gut with both integrative and conventional approaches. I took antibiotics to address bacterial and fungal overgrowth, antiparasitics, and nourished the terrain with Ion Biome (humic acid, which greatly decreased food sensitivities and intolerances). I relied on spore-based probiotics to gently diversify my gut and crowd pathogens out:
Biocidin Proflora 4r: spore probiotic to nourish and protect the microbiome without histamine-producing strains
Ion Biome Gut Health: to nourish the microbiome, and prevent leaky gut
To truly heal and put MCAS into remission, determining the root cause is critical. Medications are useful in treating symptoms and making life manageable while treating the root cause. For me it was Lyme Disease, parasites, mold, heavy metals, and gut dysbiosis. Getting two chronic illness diagnoses was half the battle. It took me 7 years to get a Lyme/MCAS diagnosis, and 8 years for parasites.
Both Lyme and parasites were equally important to treat. I couldn’t have healed to the degree that I have without treating both. They both trigger histamine release. Lyme suppresses the immune system, and parasites thrive as a result. In turn, parasites offer a hiding place for Lyme, so they can evade death during treatment. It’s a vicious cycle that allows chronic illness to thrive.
Highlights From My Treatment Plan
Antibiotics: decreased the amount of Lyme bacteria I had in my body, which subsequently decreased histamine/mast cell reactivity.
Detox: bacteria die-off triggers mast cells as toxins enter the bloodstream. During Lyme treatment, the body simply cannot clear die-off quickly enough. Detox was key. I took activated charcoal binders and administered mold-free green coffee enemas. Both were instrumental in getting me through rough patches. I never thought I’d self-administer an enema, and much less one made from green coffee. I wish you could’ve seen me preparing my first one on the stovetop, imagining the nursing gods gawking at me openly violating nursing code as I prepared the enema solution on the stovetop with distilled water in a pot. It was comical. All jokes aside, coffee enemas have kept me afloat during this journey. They have helped my body clear excess histamine, kept Candida in check, and helped clear parasites. I’ve felt the benefits, and experienced the rebound when I lag on doing them regularly. I felt so conflicted when I first started self-administering them, but I was desperate to clear accumulating toxins. Nothing else was working. To sum it up, I had to live it to believe in it. Life comes at you fast when you’re ill, and you’ll do whatever it takes to get your health back.
Biofilm Disruptors: biofilms are a slimy layer of protection created by microbes to protect themselves from the body’s immune system, and increase their resistance to antibiotics. Taking a biofilm disruptor was key during Lyme and gut treatment. I took both a natural biofilm disruptor, as well as a chemical film disruptor (Tindamax, an antibiotic).
Antiparasitics: I noticed a huge difference in mast cell reactivity after parasite treatment. Parasites trigger histamine release, so while killing them was a die-off rollercoaster, I noticed a big decrease in brain fog, fatigue, and bloating post-treatment.
Mold Toxicity: Treating mold with a gentle activated charcoal binder was another piece that gently allowed me to pull mold from my body in the least disruptive way. It helped decrease brain fog, inflammation, and anxiety.
Low Histamine Diet
I ate a low histamine diet to prevent histamine intolerance symptoms. My body was already releasing a surplus of histamine internally because of gut bacterial imbalances, parasites, Lyme and parasite die-off, and mold and heavy metal toxicity. It was so challenging to follow these dietary restrictions initially, but I tried my best to focus on foods that I could enjoy while also supporting my body. I remember crying at every meal as I ate bland chicken and broccoli. The first clinical dietician I saw had MCAS herself. She told me I’d never eat beans or hot sauce again. She instructed me to stop eating eggs although I wasn’t reacting to them. I cried throughout the whole day after my appointment with her. I questioned if I would ever really enjoy food again, or what I’d be able to share on my blossoming food blog. Telling someone they’ll never enjoy the foods they grew up with, while telling them they should be grateful for what they can still eat does not acknowledge the deep connection between food, culture, and identity. I gave her feedback during our call about providing culturally competent care, but I’m not sure how much of that landed.
Food has always been my love language, my passion, my joy. After sharing my sadness and grief with a fellow Lymie, she referred me to her MCAS-literate registered dietitian. This dietician assured me I would heal. She didn’t have any steadfast rules about my diet. She instructed me to eat what I tolerated, and to slowly add back foods to my diet. I felt a little freer, and even more driven to heal. I got some of my food joy back, and I started to play around in the kitchen again, this time with more confidence. I got creative with the foods I could safely enjoy, and began sharing the recipes I wished I’d had when I started my low histamine diet journey. That was so therapeutic:) Thank you for supporting me and encouraging me along the way. I appreciate you more than you will ever know!
I followed Mastcell360.com Lower Histamine Foods List over SIGHI because it was created by a doctor specifically for those suffering from mast cell issues. It’’s based on evidence-based research. This list allows small amounts of lime and lemon, avocado oil, and even coconut sugar. It literally saved my soul to eventually be able to use half teaspoon of lime juice in a recipe, or coconut sugar when baking. They seem like simple pleasures, but when chronic illness has taken so much from you, those things feel epic.
Early on in life, I started helping out in the kitchen. Not only was it fun, but it also taught me about something I call “kitchen medicine.” Kitchen medicine is food made with real ingredients that heals, nourishes, and strengthens us. At every inflection point in my health journey, food has been key in healing my body.
To aid in detox, I ate foods that support the liver: greens, cruciferous vegetables and herbs. I doubled down on quercetin-rich foods to inhibit the production and release of histamine: apples, cherries, shallots, broccoli, kale, red leaf lettuce, and berries. I intentionally ate gut-nourishing foods daily, and supported my hormone health with good fats.
And perhaps most importantly I ate lots of fresh herbs, spices, veggies, oils, and eventually beans (post-Cromolyn) to heal my gut and decrease inflammation:
Virgin coconut oil
I could wax poetic about the benefits of the foods I focused on, but I’ll just say that I couldn’t have thrived on this journey without these wholesome foods to hold me up during the most challenging times physically.
My goal continues to be to eat 30 plant foods/week to increase gut diversity. Kitchen medicine has always been and will continue to be a mainstay in my life.
Traditional Chinese Medicine
Acupuncture served as a weekly system reset, helping with: gentle detox, mood, sleep, and much more during Lyme treatment, and it continues to be such a helpful reset every week. I am currently in a Traditional Chinese Medicine deep dive purging old beliefs, emotions, chronic illness trauma, eliminating system blockages, stagnation, and blood weakness with electro-acupunture, cupping, and moxa. I take fifteen doses of Classical Pearls herbs daily. I would still be eating low histamine if not for Classical Pearls. I take Classical Pearls Thunder for gut dysbiosis, and Cinnamon for histamine intolerance. They are medical grade herbs that must be prescribed by a healthcare practitioner, each one a combo of multiple herbs. I don’t generally tolerate traditional herbs, but Pearls have been the perfect combo of gentle and effective.
Hypoallergenic vitamins to address vitamin deficiencies and support immune health:
Hypoallergenic multivitamin and vitamin D3
EMF protection: I began using EMF protection (Aires Cell Phone attachment) soon after my MCAS diagnosis. I read a study about EMF causing mast cell degranulation, and I never looked back. I can say it helps my body feel calmer, less jittery, and more at ease. I also turn my phone off or place it in airplane mode while I sleep. There are some great PubMed NCBI medical journal articles about the effects of low frequency EMF.
To sum it up, I did it all. A relentless multi-pronged approach has made the biggest difference.
Somatic Experiencing Therapy
Surviving chronic illness isn’t for the weak. It changes you, exposes you, and breaks you wide open. Once you reach the other side, there is so much fear and trauma trapped in the body to unravel. The body has learned to live in fear, to always sit in wait for the next symptom to appear, to fight, and fight, and fight. This is chronic illness.
I began my somatic experiencing therapy journey in San Francisco, and it grounded me each time I hit a bump in the road. It took some work to find someone whose approach I love in the D.C. area. I finally found her in late December. She has been the light I needed here on the East Coast, and just happens to have trained and lived in San Francisco before moving to the DC. We are working on retraining my brain, my body, specifically my taxed adrenals. My adrenals need to know that my body is no longer under attack. My brain needs to learn to trust life again, and that it doesn’t need to recoil in fear at what might happen next. My soul needs to grieve and accept all I’ve lost, what I’ll never get back, and what I have gained because of this journey. It’s hard work, but it’s also liberating.
The nurse in me has been humbled time and time again on this chronic illness journey. I’m not the same nurse I was when I began to walk this healing path. I no longer see healing as binary or exclusively rooted in Western practices. I’ve had faith in Traditional Chinese Medicine since 2010, but not the way I do now.
While I will always love and believe in the power of science, along with evidence-based research and peer-reviewed medical journals, I now believe in so much more. There’s a soul to my practice that was birthed on this journey.
This journey changed me, for the better. And though I will never say everything happens for a reason, I will say that Lyme Disease and MCAS molded me into who I was meant to be. It’s humbling, and soul-shaking, and there’s still so much change shifting and unfolding. I recently took on the role of Clinical Director of Outreach at LymeTV, a tick-borne disease public health non-profit. I’ll be working on multilingual outreach and education for underserved communities, as well as the TICK JEDI Initiative which aims to bring thorough mandatory tick education to schools nationwide. A year ago, I never would’ve imagined this was possible.
Thanks for reading💚💜
**I just received these lab results last night, drawn 1 year after SOT to confirm I’m still in remission. Still shocked, and so grateful.**