Progress and Setbacks with Mast Cell Activation Issues

For those of you who manage mast cell activation issues, you know how things can go great and then reverse direction within a day! Mast cells can be triggered by foods, chemicals or scents, and by environmental triggers and seemingly by 100 other items where we’re constantly playing detective. I work hard to keep my diet completely organic and to stay away from foods I’m allergic to; to not be exposed to any chemicals (such as hair dye or cleaning solvents) and to mitigate dust, pet and other pollen exposure. That has helped me to progress tremendously since my activation issues began 12 years ago. I’ve also found a few new areas that create setbacks, which I’ll share below.

Progress

My daughter, Michaela, and I have both been on Dr. Xiu-Min Li’s protocol of Traditional Chinese Medicine herbs to assist with calming down the inflammation in our bodies from mast cell activation. We both use the herbs topically only, as neither of us is able to tolerate swallowing the herbs for consecutive days or periods of time. Dr. Li has been especially helpful in assisting each of us to feel better with an herb paste that we put on the bottom of our feet overnight. These specific herbs help with acid reflux and calming the gut. I also use a special cream on my entire body that helps to calm down the mast cells throughout my body – skin, gut, nasal passages, etc.

Dr. Xiu-Min Li of Mount Sinai Medical Center

I’ve been on this protocol for 3 years; Michaela for 1 year. Each of us would love to be able to increase the foods that we are able to eat AND to have no stomach issues. We’re moving in the right direction, which is really wonderful.

Me and Michaela June 2018

Both Michaela and I also see a chiropractor in Denver who specializes in Network Spinal Analysis (NSA). This has helped our energy levels to increase and to balance out energy in our bodies. Mast cell activation can affect sleep patterns and also can affect how energy flows through the nervous system creating pain in the back especially. It’s not unusual for me to have hot flashes and awaken in an anxious state scratching an itch that isn’t prevalent during the day! NSA helps me to get better sleep, and has also helped me to be able to exercise again without extreme pain.

Setbacks

In May of this year I fell on gravel after tripping over a 3 inch lip in a trail. Not only did I cut up my hands and knees, but I also sprained my ankle and pulled muscles in my chest. My entire body went into a nervous overdrive. Within a few hours of the fall, my mast cells began going crazy causing me to feel nauseous and dizzy. I knew a mast cell degranulation was occurring because I’ve experienced it frequently enough in the past. I choked a few bites of food down and took an antihistamine along with extra Ketotifen (a mast cell stabilizer) to begin to calm my body. While it took a good month for me to be able to walk on my ankle, it took only a few days for my mast cells to calm back down. However, for those few days, I was so tired and nauseous it was reminiscent of years ago when I felt like that every day! Now, it was a minor setback. I learned that stress to the body (or to the mind) can have big ramifications for mast cells.

I also wrote about my bee sting that occurred in the summer here, which was also a minor setback. Thankfully, I know to respond quickly to bee stings and to get on Prednisone as soon as possible!

Michaela also experienced a strange reaction during this past summer. She began experiencing what she thought was a mast cell reaction at a house she was staying at taking care of the owner’s dogs. She felt dizzy, nauseous and began having the shakes – classic signs for her of a mast cell reaction. She took Benadryl and an extra Ketotifen, and felt only slightly better. The next day she began getting a terrible cold virus, and chalked up the entire situation to getting sick. After three days, at the end of the job, she returned home and then went to our NSA chiropractor. He immediately asked her how she came into contact with chemicals. He stated that the cold she had was from an overload of chemicals running through her body. He could feel her body’s negative response the minute he began working on her. She called the home owner and found out that they had just had their floors redone! The off gassing from the renovation had created organic compounds to be trapped in the house, and she reacted violently. She has now learned to ask home owners where she will be staying overnight if they’ve had any recent renovations! The good news is that she has learned to ask more questions about her environment when she is staying somewhere other than home.

Mast cells activation issues require constant vigilance and awareness of one’s environment. Injury and chemicals stress the body. Mast cells are only trying to protect, but with an activation disorder they end up hurting the body!