MCAS Advocacy Projects

PATIENT SPOTLIGHT:

This site periodically highlights a patient story. If you’d like to be featured, send an email to:

mastcellsunited@gmail.com

PHOTO PROJECT:

Working on an MCAS Photo Project to increase awareness and advocacy! If you’d like to learn more and get involved, please email:

mastcellsunited@gmail.com

Patient Spotlight: Summer Carroll

Ticks are most often associated with Lyme disease, but they can also transmit a bunch of other serious health conditions, which often lead to the development of mast cell activation syndrome (MCAS).

Summer Carroll is a 29-year-old from Alabama who originally began to have a decline in health following a tick bite several years ago. She contracted rocky mountain spotted fever and alpha-gal allergy from the tick, but the symptoms were so gradual over the first year that she did not immediately show signs of the underlying conditions. Once her body began reacting to foods as she was getting sicker and sicker, testing revealed that she had contracted the vector-borne illnesses.

Alpha-gal allergy is known as “meat allergy” and results in a delayed onset of symptoms following meals that include mammalian meat products. After a lone star tick injects alpha-gal into the bloodstream, the immune system releases IgE antibodies that recognize the invader and overreact when the body is subsequently exposed to the alpha-gal carbohydrate.

Rocky mountain spotted fever (RMSF) is a bacterial infection that causes a rash, headache, fever, and   other symptoms. It can be deadly when untreated. In 2016, over 4,000 cases of RMSF were reported to the CDC in the United States.1

As her immune system was on overdrive reacting to alpha-gal exposure and attempting to fight RMSF, Summer also began suffering from MCAS. She experienced allergic reactions to nearly everything she came into contact with, including perfume, fertilizers, secondhand cigarette smoke, air fresheners, other chemicals, foods, stressful situations, medications, heat, and even sunshine! Summer’s reactions, like many other patients with MCAS, tended to occur on a spectrum from milder reactions with hives and skin burning to full-blown anaphylaxis.

She often experienced swelling of the face, lips, eyes, tongue and throat, headaches, extreme gastrointestinal distress, itchy eyes, blood pressure fluctuations, different types of skin reactions, brain fog, heart issues, organ inflammation, lymph node swelling, blistering in her mouth/nose/lips, extreme body tremors, and severe sweating. Reactions severely affect her breathing resulting in shortness of breath and burning in the lungs. Symptoms would often linger for several days after a bad reaction.

As if that isn’t enough to deal with, Summer had about 40 seizures over the past year alongside some heart issues. She became limited to very few foods that she was able to tolerate, and it’s unclear whether this is due to the fertilizers and pesticides influencing dietary options, or other factors.

The combination of these near-constant symptoms had a tremendous impact on Summer’s quality of life. She was prevented from going into public and risked anaphylaxis even when riding in a car, because of the potential for a whiff of cigarette smoke entering car vents at stoplights. The debilitating fatigue and weakness that accompanied her other symptoms required regular help at home with activities of daily living.

As she continued to deteriorate in health, in December of 2017 Summer had become so malnourished that she became paralyzed in her feet, her toe joints turned a deep dark purple, and she began to experience a severe burning neuropathy in her lower extremities alongside muscle spasms. She had extreme muscle wasting and was eventually referred to a nutritionist, after seeing several specialists, who decided to hospitalize her immediately. He told Summer that she would be dead in a few months if she didn’t get help for her malnutrition and dehydration.

For Summer, the hospitalization was a huge breaking point.  “That’s when reality sunk in, as I sat there in the hospital through Christmas knowing I was dying and knowing I was fixing to leave my beautiful son and husband behind and on top of the heart-wrenching reality of what state I was in everything the nutritionist was trying wasn’t going so well.”

Summer’s body was rejecting the IV’s and nutrition that she was being given, and every 24 hours her IV would blow and a blood clot would form in its place. After this happened about eight times in her arms, her doctor wanted to try total parenteral nutrition (TPN), a method of administering nutrients that bypasses the gastrointestinal tract. In order to do this through a deep vein in her chest, Summer first had to see a hematologist, because her alpha-gal allergy made it tricky to find a safe blood thinner. The timing fell right around the New Year holiday and she was sent home for a few days since her doctor was on vacation and she was having continuous reactions to the hospital environment.

At that point, as you can imagine, the despair was at a high as Summer was running out of time and options. “The turning point, as I laid at home literally dying and in so much pain that death didn’t sound so bad but with my family in mind, I continued to cry out to my Lord and Savior Jesus Christ in whom I fully believe can heal and restore any that call on his name.”

As Summer cried out for help, she came across an article of a study on a natural herbal mast cell stabilizer. She had previously been hesitant to try the approach since she’d had so many bad experiences with mast cell-targeting drugs, but she decided to give it a go, and it resulted in the first relief of symptoms that she’d had in years. As her body calmed down in the month that followed, she was able to add a few things back into her diet, and over time, she was able to slowly regain muscle mass and partial function from the paralysis in her feet.

Today, Summer continues to react to triggers and experience extreme sensitivities, though other aspects of daily life have improved. She has begun to regain weight and is relearning how to walk again. She has expanded her diet to include (all organic) chicken, blueberries, oats, black beans, lemon juice, coconut oil, ketchup, and all-natural creamy peanut butter. Food is still limited to one brand and each item is only tolerated with certain specifications. She notes that the switching of brands, even if the food is still organic, often triggers reactions, so she has to be extra careful. She was also able to bring in vegan vitamins this year after a trial and error process. She is still allergic to city and bottled water but can tolerate well water.

One astonishing improvement is that since Summer began taking the natural mast cell stabilizer, she has only had one seizure! Prior to that, the seizures occurred in her sleep or in conjunction with an allergic reaction. Her specialists agreed that the seizures were occurring due to the anaphylactoid reactions and she was able to thwart them without the use of anti-epileptic medications.

While she’s nowhere near her pre-tick bite level of function and the road ahead is long, Summer continues to move forward with hope. She is on the waiting list for an MCAS-specific specialist and is passionate about raising awareness between the connections of tick-related illness and potential ability to trigger a secondary state of mast cell activation. Summer is passionate about being outdoors, traveling, seeing new places, and photography and hopes to resume these types of activities in the future.

Summer wants to make sure that patients with MCAS are aware of the dangers of malnutrition and dehydration that can occur with the condition. She notes that malnutrition is often missed in MCAS patients because of false normal vitamin and mineral levels on blood work testing in patients who are dehydrated.

Most importantly, she wants to educate others on the importance of being tick cautious. She is an incredible example of faith and perseverance in the face of severe adversity. Thank you, Summer, for sharing your MCAS story! #FightTheBite

You can connect with Summer on Facebook or in her tick-borne disease group page:

https://m.facebook.com/summer.l.carroll

https://www.facebook.com/groups/MastCellandTickBorneDiseaseAwarness/

Summer Carroll’s story in the media:

LIVING A NIGHTMARE: WOMAN NEARLY DIES AFTER UNDETECTED TICK BITE

Reference:

  1. Rocky Mountain Spotted Fever (RMSF). Centers for Disease Control and Prevention. https://www.cdc.gov/rmsf/stats/index.html. Acccessed August 7th, 2018.

Patient Spotlight: Twilah Hiari

Twilah Hiari is from Overland Park, Kansas, and like many patients with MCAS, she has had symptoms her entire life (since infancy), but did not receive a diagnosis until she saw Dr. Afrin in July of 2017.

Twilah describes symptoms that are “all over the place.” For this 42-year-old, a “mild MCAS day” consists of flushing, itching, gastrointestinal tract upset, and tendon pain all day long, accompanied by an increase in speech and mental difficulties in the evening and insomnia at night. On days where she’s more flared, she experiences more pronounced speech difficulties, urinary frequency and urgency, chest tightness, and dizziness. Twilah also notes ongoing dental issues including root canals and cavities (despite impeccable oral hygiene), excess hair loss, ringing in the ears, and a host of neurological symptoms. She suspects that she has POTS and Ehlers-Danlos Syndrome, two common co-morbidities associated with MCAS.

Prior to her diagnosis with MCAS, Twilah struggled with Premenstrual Dysphoric Disorder (PMDD) and eventually had surgery for it. She notes that many of her peers with MCAS also report connections between female hormones and their mast cell-mediated symptoms. It’s very possible that PMDD is a manifestation of underlying MCAS; hopefully future research will focus on the potential connections between the two.

One of the things that sets Twilah apart is her passion for advocacy about the connections between MCAS and mental health, and more specifically, autism. Twilah experiences neuropsychiatric symptoms in response to certain mast cell triggers. These include sensitivity to sound, problems with expressive and receptive communication, and sensitivity to light and movement. She experiences a large disconnect between her thoughts and what she can express through speech. She notes that her speech becomes stammered, slurred, grammatically disordered, or sometimes non-existent.

Twilah describes auditory processing problems that make it difficult to understand others, especially when there are background noises and when she’s in an MCAS flare. She sometimes experiences hyperacusis, or the amplification of every-day sounds. Twilah describes episodes where she’ll get stuck in a verbal loop of repeating the same phrases, and anxious meltdowns that can be soothed with “stimming” or self-stimulatory behaviors such as watching fish videos and playing with magnetized hematite.

Dr. Theoharis Theoharides is a leading researcher in the areas of inflammation, autism and mast cells, and Twilah is well-versed in his work. “Dr. T. C. Theoharides posits that some manifestations of autism are what can be described as ‘brain allergies’. He’s absolutely right in my case. The neuropsychiatric symptoms I have in response to certain mast cell triggers overlap completely with what are presently considered to be qualities associated with autism.”

MCAS-type reactions are scary, and even more so when they trigger communication difficulties. Twilah explains, “For me, the most challenging parts of MCAS are the neurological reactions. When I have a bad reaction, and become profoundly confused and non-verbal, it’s not only dangerous for me, but incredibly stressful to anyone around me. If I can’t communicate what’s wrong, or what triggers I was exposed it, it makes it more challenging to help me get through the reaction.”

The decades of debilitating illness haven taken their toll in more ways than one. The symptoms have prevented employment outside of the home. Twilah adds, “Medical bills from years of trying to treat severe, undiagnosed, MCAS drove my spouse and I to bankruptcy in 2013, so my decision to try to heal with dietary changes, trigger avoidance, and supplements is motivated by finances as much as my history of adverse reactions to pharmaceuticals.” Like so many patients with MCAS, Twilah has a history of severe reactions to the additives, fillers, excipients and binders in medications and prefers to focus on a more holistic approach.

Despite the challenges that Twilah faces each day, she has already begun to make “lemonade” out of the difficult cards she’s been dealt. She enjoys writing projects and has an outstanding blog that shares her patient experience and expertise. And, fortunately, in the past few years she feels like she is making progress in the right direction in terms of navigating life with MCAS. In addition to stimming, Twilah finds the anti-histamine and anti-inflammatory properties of silbinin (found in milk thistle extract and tea) to be helpful for calming her neuroinflammatory symptoms.

“My greatest hope for the future is that knowledge and understanding of mast cell disease will begin to permeate the medical field. Right now, there are far too many practitioners who are eager to dismiss mysterious symptoms, especially symptoms that affect multiple body systems, as psychogenic. When you tell a person with mast cell disease that it’s all in their head, you’re not only blaming them for a debilitating illness, you’re removing access to treatment for that illness. Yes, doing something like training the brain through meditation is fantastic. I’m Buddhist and the value of meditation in my life is huge, but it’s unreasonable to expect an ordinary person to cure a serious immunological disorder through the power of their mind alone. It sets up people for crushing disappointment and self-blame that makes them even sicker. But if you encourage people to integrate mindfulness with actual treatments like antihistamines and mast cell stabilizers, you’re more likely to set a person on a path to healing. So ultimately, I’d like to see more accurate MCAS diagnoses and fewer psychogenic aka blame the victim diagnoses.”

Twilah offers hope and inspiration for so many patients suffering with the physical and psychological impacts of MCAS. “I absolutely think it’s possible for many of us to establish or regain at least some measure of health if we sort out our triggers and figure out what our bodies need to heal. My advice is pay attention to your body and document everything. Since I started a journal documenting everything- what I eat, what supplements I’m taking, the weather, what I’m environmental triggers I’m exposed to, etc., I’ve learned a lot about how to honor the needs and limitations of my body. And buy a cute Vogmask! Protecting yourself against environmental triggers doesn’t have to be boring and unfashionable.”

You can find a link to her blog here:  athinkingpatient.com

 

 

 

This content is Copyright © Mast Cells United and is for informational purposes only, and should not be used as a substitute for medical advice. Always seek the expertise of a qualified medical professional for personal health questions and guidance in diagnosis and treatment.

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