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Life with a poorly understood multi-system disease process like Mast Cell Activation syndrome can be complicated.

I’ve been experimenting with different strategies to heal my brain and body from the massive injuries I incurred in 2014. If you haven’t read the short version of my story elsewhere, in 2014 I had a serious gastrointestinal infection that was treated with antibiotics for several months. The infection happened concurrent to a series of adverse reactions to drugs I couldn’t metabolize, as well as adverse reactions to adjuvants and excipients in drugs I may have otherwise been able to process. This perfect storm of events culminated in a loss of my abilities to read, write, speak, and understand speech, among other things. I haven’t yet regained full, consistent mastery of those abilities.

I have no doubt that destruction of any healthy gut microbes I once had played an enormous role in my injury. I sent off a little sample to the folks at the American Gut project to get a rough idea of what I have left in my slimy nether regions. The gut-brain connection is an area of relatively recent investigation, but evidence gathered so far is compelling. A meta-analysis of research confirmed there’s a relationship between gastrointestinal symptoms and behaviors that are consistent with what’s currently described as autism.

So, what was in my autistic gut? Compared to other testers, not much. I have very little microbial diversity, and I have far too much of one phylum of bacteria called firmicutes. It seems a heavy dose of firmicutes can make a person heavy, as those bacteria have been associated with obesity. I thought that was an interesting insight. Slimming down is on my agenda, but that wasn’t one of the motivating reasons for me to pursue my microbial investigation.

For weeks, I’ve been systematically trying different methods for healing while tracking the outcomes. It was time for a new strategy. On August 29th, I received a bottle of probiotic Lactobacillus Reuteri from Bioamicus Probiotics.

Why L. Reuteri?

Well, in one animal study, mice with behavioral deficits that were given L. Reuteri exhibited resolution of those deficits with the addition of that specific bacterium. I’m fully aware that animal studies don’t translate precisely or sometimes even at all to humans, but I was interested there was some preliminary evidence that this L. Reuteri might affect the brain. I don’t necessarily want to correct any of my perceived behavioral deficits, but I was interested in how my brain might respond to a microbe reputed to have the potential for psychophysiological change. Perhaps those changes would be different for me as a human if they presented at all. Another reason I chose L. Reuteri is because it’s recognized to have anti-inflammatory qualities, and Mast Cell Activation is characterized by inflammation.

I knew I was taking a risk, however, because another of L. Reuteri’s qualities is that it raises histamine levels by converting dietary histadine into histamine, but that concern was counterbalanced by its ability to simultaneously lower inflammation. That’s achieved by increasing levels of cyclic adenosine monophosphate (cAMP), whose role in inflammation is nicely explained here.

The L. Reuteri arrived at my home in the U.S. after being sent by the manufacturer in Canada, and I was a little concerned about whether the microbes would still be active. The frozen pillow pack in which the bottle had originally been wrapped had thawed. I set bottle in my refrigerator and read the dosing directions.

Drip. Drip. Drip. Drip. Drip. I let five drops fall into my bottle of reverse osmosis filtered water. Sip. Within ten minutes I felt just a bit of tightness in my chest, but that’s something that happens on and off for reasons I often can’t identify, so I didn’t think I had enough evidence to blame the L. Reuteri yet.

It had been weeks since I’d had a relaxing day outside, so I packed up my gear and headed out to go graving. Graving, for the uninitiated, is a calming pastime for genealogy enthusiasts. It consists of copying a list of requests from findagrave.com and perusing cemeteries until the requested grave markers are found and photographed. The photos are then uploaded to the site, where thousands of other people can access them. It crossed my mind that if the L. Reuteri made me more social, like it did the mice, I might have to ditch graving and find a hobby that involved living people, rather than dead ones. Shudder. I hoped not!

A couple of miles into my drive, my feet began to itch. For me that’s a somewhat serious sign of a powerful histamine attack, so I pulled over and took a capsule of dye-free Benadryl. I waited for a few minutes while I thoughtlessly sipped my water. The itching began to abate, and I pulled back onto the highway.

A minute or so later my face began to itch, and at the same time the itching in my feet came back with greater intensity. I drove to the parking lot of a hospital where I could sit and observe my symptoms within reach of emergency assistance. I took off my shoes and watched my heartrate on my Fitbit Charge. My resting heartrate usually hovers around 65 bpm, but my Charge reported a somewhat alarming 112 bpm. I popped another Benadryl and waited. After about 20 minutes and zero swallows of the offending water, the itching began to subside and my heart rate eased back to 80 bpm.

I drove home, where a wave of fatigue overtook me. I poured out the rest of my water and put the stainless-steel bottle in the dishwasher where it would be safe from my thoughtless grasp. My body always requires a lot of rest, I’m exhausted if I spend less than ten hours in bed on a good night. But during a flare, things change. Despite my exhaustion, on the night of L. Reuteri’s wrath, I only managed five and a half hours of intermittent sleep. A morning review of my Fitbit data showed that my heartrate had risen to 172 bpm at one point in my sleep! I wondered whether that could be an anomaly with my Fitbit, but a review of my sleep data didn’t show any similar events over the past few months.

I spent the following two days almost completely bedridden. The itching and tachycardia had been replaced by exhaustion and bladder spasticity. There were neurological ramifications too. I lapsed in and out of consciousness for about 48 hours. During my waking moments, I was slowed by brain fog, and the words I reached for were harder to find. By Friday, L. Reuteri’s acrimony had worn off, and I was back to my baseline fatigue and itchiness.

Treating a decimated gut and mast cell disease is a long process of trial and error, and for me L. Reuteri was definitely an error. For safety in the future, I’m going to make sure I try any new supplements in the presence of another adult. Please use more care than I did when trying anything your body isn’t accustomed to, and it can be a good idea to run it past a knowledgeable clinician first if you can find one.

The specific strain of L. Reuteri I tried was NCIMB 30351 by BioAmicus Laboratories. I recommend the brand because their products are free from common allergens including egg proteins, gluten, nuts, corn, soy, wheat, fish, shellfish and artificial flavors.

I purchased the product and am not affiliated with or compensated by BioAmicus Laboratories.

Have you tried L. Reuteri? What was your experience like?

 

Want more from athinkingpatient? Consider sponsoring me for as little as $1 per post per month at https://www.patreon.com/TwilahHiari

 

Twilah H is a recovering patient. She studied Philosophy with a concentration in ethics at the University of Kansas. Through writing, meditation, relationship building, and quilt creation she has found a place of peace.

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