Alpha-gal Syndrome in Maine: A Personal Story

Meet Colleen Plumer, a 57-year-old from Southern Maine, who developed alpha-gal syndrome (AGS) after a tick bite. Recent CDC findings have identified AGS cases in Maine, linking them to bites from black-legged ticks.  This challenges the previous belief that only lone star ticks could trigger AGS.  Colleen's experience sheds light on the expanding reach of AGS beyond traditional tick habitats.​

Can you tell us a little bit about yourself?

I grew up in Aroostook County, Northern Maine, where we didn't have ticks in the 80s. I remember my parents visiting us down south in the 90s and getting a tick on their dog. They talked about how ticks were starting to work their way north, but it still wasn’t a huge problem yet. As a kid, we played in the woods with abandon, but as I got older, I spent less time in nature. After college and a year or two away, my husband and I settled in Southern Maine to raise our kids. We raised them aware of ticks on our property in Southern Maine, but generally only worried about Lyme disease. We treated our pets and checked our kids constantly. In 2018, I was working in downtown Portland and would sometimes take my lunch break walking along the Eastern Prom, a path along the water covered in bushes and trees. I had a favorite spot right on the water, nestled in the bushes, where I’d sit and read. There were many people, including tourists, who would walk their dogs in that area, and I've always suspected this is where I received my alpha-gal tick.

When were you diagnosed with AGS? Did you know about it previously? How long did it take for you to be diagnosed?

The Pre Alpha-gal Days

My husband loves music and used to say that the worst thing that could ever happen to him would be going deaf. Not long after installing a new surround sound system in our home, he went deaf in one ear due to a viral ear infection. In 2017, I saw a report on the news about "The Red Meat Allergy," and I jokingly said to my husband, "That will be what I get. That will be my deaf ear." In May of 2018, I picked up Chinese food for my birthday dinner. Later that night, we were in bed reading when I went from feeling totally fine one second to thinking I was going to vomit, pass out, and soil myself all at once. I made it to the bathroom and then realized I was covered in a lacy red rash over my whole body. I took two Benadryl and started to feel better. My first thought was that something had been wrong with the food, but in the back of my mind, I remembered that news segment on Red Meat Allergy. I told my husband I was sure I had it and was scared to eat meat. I stopped eating all meat except chicken for four months, with my family making fun of me the whole time. I felt fine during that time. No one else believed I had it, and in September 2018, we were going to Walt Disney World on vacation. I wanted to eat all the good foods! So, I tested a piece of bacon and was fine. The next day, I ate a hamburger and was fine. I started eating meat again and had a great trip, followed by two months of eating meat.

The Horrible Day

In October 2018, my husband was away on a business trip, and I went to dinner with relatives at a BBQ place. That night, I woke up feeling sick to my stomach, and as I got out of bed, I noticed my hands and lips seemed swollen. I also felt like my heart was racing and felt confused. As I sat there assessing the situation, I started to feel like I needed to clear my throat, but it was difficult. I think I immediately panicked. I grabbed my phone and dialed 911 while heading downstairs to get some Benadryl. I had the phone on speaker, and the whole time I was giving them my information, I was trying to open the Benadryl pill bottle. By then, my fingers were so swollen it was difficult. They spilled all over the floor, and I managed to get three in my mouth, then leaned down to pick up the others before my dogs could get to them. That probably took only a few seconds, but during that time, I started having trouble breathing and was afraid of passing out. I was still on the phone with 911, and they told me help was almost there. In my confused state, I somehow believed the cold October air would make it easier to breathe, so I went outside and sat on the front steps, but I could no longer bend my fingers. Opening the door took both hands, and I put the phone in my mouth. Once outside, I sat on the steps but couldn’t grasp the phone with my swollen hands, so it fell to the ground. I have this memory of sitting on the cold granite steps in my nightgown, the 911 operator yelling, "Stay with me, they’re almost there," from my phone on the ground. I looked up at the stars, barely able to breathe, and wondered if this was how I was going to die. Luckily, after a few very labored breaths, I felt it get a little better, and then I noticed my whole body itched. A few seconds later, I heard a siren in the distance. I was taken by ambulance to the hospital. I was feeling better, but during the trip, my rash started to spread, and I began feeling bad again. They did a diphenhydramine drip, and I seemed to improve almost immediately. After a long night, the ED gave me a prescription for an EpiPen and told me to contact my PCP right away.

The Weird Days Leading to Diagnosis

I was now convinced, based on my symptoms and the timeline, that I had alpha-gal syndrome (AGS). I called my PCP and requested a referral to an allergist. I was fortunate to have an allergist who truly listened to me. Although he had no prior knowledge of AGS and had never seen a case, he agreed it was a possibility and added the AGS test to my other tests. I went home, stopped eating meat, and carried my EpiPen everywhere.

Two weeks later, I received a call from my allergist’s office, informing me that all my tests had come back negative. I asked if that meant I could eat meat, and the office confirmed that I could. However, they told me I should still carry my EpiPen, and they would schedule a follow-up appointment to discuss further. They classified my condition as idiopathic anaphylaxis.

From October (2018) to the following February (2019), I ate meat again—mostly steak, as I had avoided pork after my two reactions. Although I had no immediate reactions, I started feeling increasingly tired and achy. I was diagnosed with borderline anemia and prescribed high doses of Vitamin D. My bones ached, and I had trouble walking up stairs due to sore knees and elbows that hurt when holding a book. I stopped doing most activities.

In mid-February, my son came home upset because I hadn’t returned his call. I showed him my phone, which had no missed messages, but he insisted he’d left two. I ended up calling my doctor, who was able to retrieve a bunch of old, missed messages. One of them was from my allergist, a week after the initial call, stating that my AGS test results had come in positive. The message said I should stop eating beef, pork, and lamb, and that I could call if I had any questions.

At that moment, I felt both vindicated (take that, family who said I was overreacting) and relieved. I finally knew why I’d been having reactions and how to prevent them. I stopped eating meat, switched to a vegan Vitamin D supplement, and within days, I felt so much better—able to hop up stairs and lift heavy items with ease. I had not realized how much inflammation from an allergy could affect the whole body.

What has been your biggest challenge navigating an AGS diagnosis?

Fear. Fear of eating in restaurants or at others houses, events like weddings, or while traveling. I have a fear of foreign speaking countries even more. I was able to switch to a mostly vegan diet easily. I found out the hard way I am one of those that cannot have carrageenan. I also stopped all dairy as it gave me gastro issues. I had occasional reactions the first year but was able to handle them with my allergists plan of different meds. I spent a year not eating anything after 4pm and then staying awake until 11pm just to be sure I wouldn’t have a reaction in my sleep again. Eventually things ease up and you get used to the new life with new foods. But I have never been anywhere without an epi-pen at my side since.

How have you gotten involved in the AGS community?

My initial move was to join AGS Facebook groups, and I learned a lot of information in my early days. They told me about the Robert Wood Johnson University Hospital Drug Information Service used by pharmacists, which at the time was very helpful to individuals as well. Most of the information I was able to get in the early years came from Facebook. It was there that I learned the history of the discovery of AGS and many items I could refer to when experiencing unknown reactions. I’m no longer active on Facebook, as the groups can get overwhelming, but I still use them as a resource. For example, every flu season, someone shares information about safe variants for flu shots.

What is the most surprising thing you’ve learned since being diagnosed with AGS?

How many things—food, medicine, and otherwise—can contain mammal! Things like dryer sheets, makeup, and toilet paper. Also, the surprising use of “natural flavors” in so many foods. Ingredient lists must list all ingredients, except “natural flavors,” which can cover any flavoring from either plant or animal without listing the source. This seems dangerous for many allergies, not just AGS.

How have different levels of healthcare (e.g., pharmacies, hospitals, etc.) worked with you to manage your AGS diagnosis?

Considering I live in a state barely touched by AGS, I have had some great experiences. My allergist jumped right in to researching AGS and we trade information at my appointments. I found a dentist who also seemed interested and was open to accommodating my needs. I had one trip to the ED with a vertigo episode and they listened about my AGS and then called the Robert Wood Johnson info line to check all meds they wanted to give me. (Spoiler none were safe! They ended up on Benadryl but their pills weren’t safe so I took my own Unisom tablets I carried at the time) They did say that the info was now in my records at the ED but she was very nice in explaining that any life saving emergency situation would always proceed before checking records so I should get a medic alert bracelet. That’s also when I found out that Heparin is not safe and should be listed on my bracelet. Both my optometrist and a local clinic I went to for eye surgery have been extremely careful and looked up safe medications even making substitutions when needed. The only issue I’ve had is getting the information into my medical records. At first there was no code and it was written in the notes that no one seems to review so anytime not seeing my primary provider I'd have to explain again what AGS was and ask them to check anything they gave me or used on me. Sometimes more than once an appointment. Now there is a code but it’s for “allergy to mammalian meat” so I still have to explain that it's not just a food allergy but a medication allergy too. The same thing happens at pharmacies.  Luckily I don’t have any ongoing prescriptions or other health problems so it hasn't been too much of an issue.

How easy or difficult has it been for you to learn what to avoid or what is safe for you?

Food-wise, it was not too hard. I ate vegan, minus carrageenan. I'd been vegan before for a while, and my kids are vegetarian and have been vegan at times. I added any non-vegan foods I was unsure of slowly. The non-food items were harder. My stylist had to change my hair dye and stop using any extra products. I changed shampoos and deodorants. I found I could not crochet with wool or wear wool socks. It was a slow, ongoing process of elimination and fear of reaction. The first year was the worst. Once all my histamines settled, it got a little better. Now, six-plus years in, it's just a normal part of life.

How has Pill Clarity (formerly VeganMed) impacted your experience with AGS?

Not long after I was diagnosed I started hearing so much more about AGS, it seemed to grow quickly and the Robert Wood Johnson info line stopped responding to individuals. I was only able to get med ingredient info by contacting places directly or going to the Facebook groups and hoping what people shared was correct and safe for me as well. Pill Clarity makes life so much easier. It’s easy for me to look up things myself and already know options are available when I see a provider. It’s nice to look up “pain relief patch” and see a safe option without having to research or contact the companies and wait to see who gets back to you.

What do you wish you could change about medications/healthcare and its relation with AGS?

I would love to see AGS recognized as an official top allergen. I would love to see mammalian ingredients be listed on foods and by extension natural flavors be listed out by source even if only plant vs. animal.

What advice would you give to those newly diagnosed with AGS?

Do not panic at how hard it seems at first. Like everything it will get easier. Also as you stop consuming mammal your body will start to heal, your histamine levels will reduce and eventually you’ll have less reactions and learn a new way of life that isn’t as hard as it seems now. Some people recover or go in to remission so there is always that hope as well.

Thank you to Colleen for sharing her story! Interested in sharing your story? Email us at info@pillclarity.orgto be featured in our next blog.

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