Help Change Natalie's Life with MCAS Treatment

My name is Natalie. I’m a 23 year old writer, graphic designer, and psychology student, and my entire life, I’ve lived with a mysterious chronic illness. My biggest goal has always been to make the most of my life even though I’m sick, and I’ve invested immense amounts of time and money into the hope that I might one day know what disease I have.

That day finally came on October 15th, 2024, when I sat down with my naturopathic doctor and officially got diagnosed with Mast Cell Activation Syndrome (MCAS for short). I left his office with plans to start this GoFundMe and fund his treatment plan for me any way I can.

As I’m beginning to understand, this syndrome has been impacting me my entire life. Dating all the way back to when I was just six months old, MCAS has landed me in multiple doctors’ appointments, taken me to the hospital several times and even to the ER, and recently, completely drained me of all the energy and vitality I used to have. I’ve lived a life of random attacks of vomiting, chronic fatigue and pain, depression and PTSD, extreme iron deficiency anemia, and recurring, long-lasting infections–but somehow, my condition worsened again in September of 2024. Not only have I had new symptoms on my plate since then (like tachycardia and low blood pressure), but I’ve struggled to do the most basic things, like walk my dogs, put away laundry, or even just get through the day without a nap.

So I finally booked an appointment with a naturopathic doctor on September 12th, and after a month of testing, appointments, questionnaires, and phone calls, I finally received my official diagnosis from him on October 15th. Mast Cell Activation Syndrome is diagnosed via questionnaire and laboratory testing (see Diagnosis Classification Management of MCAS). I scored 29 on the questionnaire (more than double the top limit of the diagnosis range, which is 14) and had multiple tests come back abnormal (which I’ll tell you more about later).

MCAS is relatively new to the medical world; it wasn’t even properly named Mast Cell Activation Syndrome until 2007, which is why it’s so hard for people like me to get a reliable diagnosis (see MCAS An Up-to-Date Review and MCAS Wikipedia). MCAS is a complex disorder of the immune system involving the mast cells, a type of white blood cell that lives in tissues all throughout the human body. Mast cells protect the body from viruses, bacteria, parasites, toxins, and particles that may be harmful by releasing chemicals called mediators. In those with allergies, mediators are the reason behind an allergic reaction. In healthy people, mediators protect and heal.

But in MCAS, the mast cells mutate and misbehave, and mediators become harmful. Mast cells affected by MCAS can react to any and all triggers–foods, changes in temperature, cleaning supplies, clothes that cause friction, medications, exercise, electromagnetic fields, and stress–with seemingly no rhyme or reason, and when they react, they release mediators that can cause a whole array of symptoms throughout the entire body (see MCAS according to the AAAAI and MCAS according to Mast Cell Action). Successfully predicting, identifying, and targeting these triggers can be extremely challenging. For example, I recently began to suffer flu-like symptoms after putting my mini fridge and microwave too close to my bed. Not only that, but a few days ago, the chemicals and fragrance of disinfecting wipes (ones I used to be fine using) sent me into a severe response that gave me insomnia, had my throat closing, and made me cough and wheeze as if I were in the middle of an asthma attack—with my only relief eventually coming from an air purifier.

My MCAS puts me through a wide variety of medical issues every day. I wake up every morning feeling as though I have a cold, with aches in my head, neck, and shoulders, congestion and sinus pain, a feeling of tightness in my chest and a cough, and a sore throat. If I’m lucky, those symptoms subside from a 7 to a 3 in severity throughout the day. Then, depending on what I come in contact with, I experience a long list of symptoms: flushing, itching, hives, redness and swelling if my skin gets scratched, stomach pain and cramping, nausea and vomiting, diarrhea, constipation, heart palpitations, a rapid heart rate, low blood pressure, wheezing and shortness of breath, headache, brain fog, dizziness, anxiety, depression, fever, chills, muscle and joint pain, and fatigue. In severe instances, MCAS can even cause anaphylactic shock. And the cherry on top: because my mast cells are so active, the rest of my immune system is weak and slow–I get sick extremely easily and I stay sick for weeks.

To make matters worse, the baseline of an MCAS patient worsens every time a major stressor or traumatic event is experienced, of which I’ve had a few. I’m at the point that I barely recognize myself anymore. I struggle to sleep, I struggle to wake up, I struggle to get out of bed and move, I struggle to exercise and play with my dogs, I struggle to focus on the tasks in front of me. I’ve never really thrived; I’ve always just survived. Now, it feels like I’m barely even doing that.

To put it as simply as I can: MCAS has taken my life from me.

If you ask those who know me best, those who have been close to me my whole life, they’ll tell you I’m a dedicated and hardworking go-getter. Even being chronically sick with several different, seemingly unrelated and incredibly difficult afflictions, I’ve always had a harder time stopping and resting than getting started and going. I’ve never been one to shy away from a challenge, or even to experience a daily slump. And though MCAS has made me incredibly fatigued, tired, and bogged down with brain fog, I'm still willing to work hard and face a new challenge: the silver lining of treatment!

Treating MCAS begins with steps I’m already working on, like surrounding myself with less EMF devices, eating low-histamine, gluten-free, and dairy-free, and drinking 85 ounces of water, exercising 30 minutes, and getting 7-9 hours of sleep a day. I’ve begun keeping a food journal to understand what foods cause what reactions, I’m going to be using natural cleaning products from here on out, and I now carry two Epi-Pens with me at all times (see MCAS Self-Management and Bruce Hoffman's MCAS Tips).

But there are several parts of treating this disease that I can’t do on my own. The behavioral and lifestyle changes I just talked about are the best ways to respond to my disease and hopefully get ahead of any negative responses my mast cells may have. The treatment plan my naturopathic doctor, Dr. Hersh, gave me on October 15th is designed to change my immune system. Dr. Hersh’s main goals are to calm down my immune’s system response, resolve external factors such as my PTSD and chronic infections that are worsening my MCAS, detoxify my body, remove pathogens from my cells, and restore my gut health. All of this together will completely transform my health–and my life.

Below, I will explain to you some of my abnormal lab results and how they confirm the presence of MCAS, as well as give you a full outline and breakdown of what your money will be going to should you donate to this fund: my treatment plan, which includes more testing, several IV treatments, hyperbaric oxygen chamber therapy, neurofeedback training, a vagal nerve stimulator, bioidentical hormone replacement therapy, and 4-6 months of 23 different supplements.

There’s just one problem: my doctor is a naturopath. Diagnosis and treatment-wise, this isn’t a problem; it’s a blessing. Dr. Hersh has five star review after five star review and a Naturopathic Medical Degree from Bastyr University. He is the only doctor I’ve ever seen that hasn’t rushed me, that has listened to my entire life’s worth of medical issues, that validated how sick I am in our first appointment despite me being young and not necessarily outwardly sickly, and that has taken the necessary time to run a gamut of tests in an effort to understand what might be going on. He’s the only doctor I’ve ever seen that knows what MCAS is, that knows enough to recognize it in me and diagnose me, and that has full confidence in a treatment plan. I trust Dr. Hersh with my life, and I really am putting my life in his hands in going forward with his treatments.

But because he’s a naturopath, Dr. Hersh’s testing and treatments are not covered by insurance. His office, Transformative Medicine, does offer payment plans, but I’m using grant money to go to college and am living below poverty level income. I’m not healthy enough to work outside of the house more than 20 hours a week—25 if I’m lucky, and even then I can only work with accommodations that allow me to take a break to sit down if my dysautonomia (fast heart rate and low blood pressure) acts up or even to call out if I’m having a bad flare day. My parents are helping me pay for what’s left of my college costs after my grants, but my dad lost his job in 2023 and, despite having two master’s degrees, now makes half the yearly income he used to thanks to the abysmal job market. Additionally, because MCAS can react to the fillers in medications, most of my supplements and medications for this treatment program--and for the rest of my life--will have to be compounded at a compounding pharmacy.

To make a long story short: I can’t afford this life-changing, and even life-saving, treatment, and my parents can’t afford to help me with it. Throughout the past few weeks, I’ve realized that I have never known what it’s like to be healthy. My symptoms have been present through infancy, childhood, and adolescence, and now are the worst they’ve ever been in young adulthood. I feel like my life is over before it’s even started because of my MCAS. Your donation to my GoFundMe will change my life. With your help, I can get my health back and reclaim my financial, emotional, social, and physical life!

I miss my life. After a few short months with Dr. Hersh’s treatments, I could have it back. I see myself post-treatment as a different person: happier, healthier, walking and hiking and playing with my dogs, finally working full-time and having financial security again, and being able to move my body without pain. Maybe one day, I’ll even be able to eat without modifying every recipe! You can help me get there. I hope you’ll donate, but if you can’t, spreading the word about my campaign is the next best way to get me on my journey to recovery. Donations of any size, as well as sharing this GoFundMe on Facebook, Instagram, or through text, would mean the world to me.

More details about my lab results and the full outline of Dr. Hersh’s treatment plan can be found below.

Thank you so so much,

Natalie :)

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THE TREATMENT PLAN - where your money will go :)

FURTHER TESTING - $1055 total

1. ALCAT $380 (done!)

2. Lyme $545

3. Estradiol $30 (done!)

4. CMV $50 (done!)

5. EBV early antigen $50 (done!)

IV THERAPIES - $6750 total

1. Quercetin (8 IV treatments @ $275 total = $2200 total)

2. ALA MVA (6 treatments @ $175 total = $1050 total)

3. Major Autohemotherapy with Ozone (5 treatments @ $150 ea = $750 total)

4. High Dose Vitamin C with Artemisinin (4 treatments @ $375 ea = $1500 total)

5. Nutrient Therapy w/ Amino Acids & Glutathione (5 treatments @ $150 ea = $750 total)

OTHER TREATMENTS - $1450 total

1. Bioidentical Hormone Replacement Therapy (BHRT) ($100/mo for several months)

2. Hyperbaric Oxygen Therapy (28 treatments @ 125 = $3500 total)

3. Vagal Nerve Stimulator ($700 total for device)

4. Neurofeedback training (30 sessions @ $175 = $5250)

SUPPLEMENTS - $2405

PHASE 1: CALMING IMMUNE FUNCTION $228 (x 4 = 916 total)

PHASE 2: DETOXIFYING $343 (x 3 = 1031; DOESN'T include nebulizer)

PHASE 3: REMOVING PATHOGENS $193

PHASE 4: RESTORING GUT HEALTH $265

TREATMENT TIMELINE

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THE LAB RESULTS

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