By Amber, Rocky Mountain Spotted Fever, Alpha-Gal Allergy, & Mast Cell Activation Syndrome, United States, August 13, 2018
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 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
Summer’s GoFundMe page: gf.me/u/j25t5b
You can connect with Summer on Facebook or in her tick-borne disease group page:
Summer Carroll’s story in the media:
Mast Cells United
Mast Cell Disease .com