In 2020, the hospital recorded just two confirmed cases of alpha-gal sensitivity. By 2022, the number had jumped to 77. This year, as of Sept. 30, the hospital had 365 positive cases.
Betsy Shay rarely eats red meat. But one day this summer, she decided to have a hamburger for lunch.
Six hours later, her life changed.
“I was dizzy, I was nauseous, I couldn’t figure out what it was,” the Aquinnah resident recalled this week. “It was nothing like I’ve ever had before.”
What she ended up having was alpha-gal syndrome, an allergy to red meat and potentially other mammalian products that has spread like wildfire across the Island in the last few years – raising concerns among health care officials who have no real treatment options.
The number of positive cases at Martha’s Vineyard Hospital has nearly quintupled in just the first nine months of 2024 when compared to all of last year. Cases first started to pop up about four years ago, though doctors on the Island and further afoot weren’t quite sure what they were seeing.
In 2020, the hospital recorded just two confirmed cases of alpha-gal sensitivity. By 2022, the number had jumped to 77. This year, as of Sept. 30, the hospital had 365 positive cases.
“Alpha-gal really wasn’t a concern on any of our radars four or five years ago, and now it is,” said Lea Hamner, an epidemiologist with the Inter-Island Public Health Excellence Collaborative, at a talk about the allergy hosted by the Vineyard Haven Public Library this week. “Everyone is one degree of separation now, at this point, away from someone with alpha-gal syndrome on Martha’s Vineyard.”
The syndrome’s rapid rise is due in part to lone star ticks’ spread around the Island. The ticks first appeared on the Vineyard around 2011, largely sequestered to Chappaquiddick and Aquinnah.
At the time, there was no rise in diseases or alpha-gal, but surveys done in recent years show the ticks are now found in every town, across all kinds of terrain, correlating with the explosion in cases of alpha-gal.
“No one is excused from the lone star anymore,” said Patrick Roden-Reynolds, the biologist who runs the Martha’s Vineyard Tick Program.
Before arriving on the Vineyard, the tick was largely confined to the southern and midwest regions of the U.S. Identified by the eponymous white dot on the back of adult female ticks, the arachnid is believed to thrive in new areas further north due to climate change.
Dr. Scott Commins, one of the foremost experts in alpha-gal syndrome, spoke before nearly 100 Islanders in a virtual presentation on Monday. He treats patients at the University of North Carolina School of Medicine allergy clinic, and has been researching the allergy that has baffled scientists.
Recent studies estimate the number of alpha-gal cases in the country have risen to 450,000 people, putting the syndrome at the 10th most common food allergen in the country, he said.
Researchers believe that lone star ticks carry the alpha-gal carbohydrate, something that is naturally occurring in mammalian meat, with the exception of primates. When a lone star tick bites a human, the human body will begin to make an allergic antibody that recognizes alpha-gal, giving people various allergic reactions when they come into contact with the carbohydrate again.
The issue with alpha-gal syndrome is the allergic reaction seems to be triggered far beyond a hamburger or steak dinner. Medications that have gelatin in them or even just the smell from a barbecue can cause discomfort, and a large number of patients report reactions to dairy.
“When we looked at this, about 30 to 40 per cent of our patients were bothered by dairy,” said Dr. Commins.
One of the confounding things for patients is that allergic reactions can vary so widely. The syndrome can trigger hives or even anaphylactic shock in some people. Others experience digestive issues, including Ms. Shay in Aquinnah. The allergy can often take hours to manifest, earning the syndrome nickname “the midnight allergy.”
“You can literally have a hamburger for dinner at 7 p.m. and nothing may happen until midnight or 1 a.m.,” said Dr. Commins. “So, you can imagine it makes diagnosis quite a challenge.”
He encouraged people with alpha-gal to carry epi-pens, as there is currently no treatment for the syndrome. The allergy does appear to wane though over time, and patients have successfully reintroduced dairy, red meat and other animal products back into their diets.
Dr. Gerry Yukevich, a physician at Vineyard Medical Care, said the rapid spread of the allergy has people worried, especially because the baby ticks, which appear no larger than a speck of dirt, seem to spread the alpha-gal as easily as the adults.
“At first people were wondering, what the heck is this,” he said. “Is it scabies or a parasite?”
This summer, dozens of people reported rashes and bites that appeared to have been from the larval ticks. Aubrey Stimola Ryan, a physician’s assistant at the hospital, said similar clusters of bites appeared last year as well.
Patients who have symptoms can get blood tests at the hospital, and Ms. Stimola Ryan said she will often send patients home with information resources and a prescription for an epi-pen.
“I don’t think a day goes by on one of my shifts where I don’t order a tick panel,” she said.
The new allergy has caused some anxiety in Islanders, who either are struggling with adjusting to a new diet or fear they will end up getting it. Dr. Yukevich had one patient say they were thinking of selling their property on the Island because they didn’t want their grandchildren to be allergic to meat.
“Unfortunately at this point, there’s not a whole lot you can do but be aware,” Dr. Yukevich said.
A support group was started this summer to help Islanders cope with the drastic change to their lives, and more than three dozen people attended the first meeting in July. Dr. Yukevich and others said as the allergy becomes more prevalent, restaurants may have to be more sensitive about displaying what animal products are used in the cooking process for a variety of dishes.
Ms. Shay has been learning to live with the allergy; she uses coconut milk instead of cow’s milk in her coffee and has been trying out vegan cheeses. She’s found a vegan butter that hits some of the notes of the real thing and will have to do for now.
“I step away from the grill now,” she said. “There’s never bacon in the house. I’m learning all the time.”
Comments
In addition to gelatin in
Alissa Keenan MVIn addition to gelatin in medicine, alpha gal can be found in mammal derived magnesium stearate. It would be so helpful if the labels identified the source of the magnesium stearate, as well as identifying sugar that has been processed with bone char. Alpha gal is also found in carrageenan, a seaweed commonly used in packaged foods.
Unfortunately it isn’t
JDFUnfortunately it isn’t currently a legal requirement to label things as such nor is it a requirement of medication.
Not a legal requirement, yet,
AlissaNot a legal requirement, yet, but the writing is on the wall. It would be better if our FDA was proactive on this. Would save a whole lot of needless suffering, and possibly even save lives
Southern Maryland has a lot.
Joanna MarylandSouthern Maryland has a lot. The doctors have heard of it, but need to know more. We really need labels. I just spent hours calling a manufacturer to find out if a vaccine was safe. After 3 weeks they told me a health professional needed to call instead! Do you know how busy the doctors and pharmacists are? On the day of the vaccine, they switched it for a different one. Fortunately, a Facebook admin had shared some comments from Scott Commins a few days before, so I learned what was ok. Mammal is in everything and I reacted to soap, shampoo, and face creams but not milk. After 2 years, my blood test numbers dropped, but I suspect I had it for years with lots of weird drug reactions and rashes that had no cause.
This is an extremely serious
tom BostonThis is an extremely serious situation and in need of a vaccine (yes RFK, Jr, a vaccine). The beef, pork and dairy industry should get behind an effort yesterday. Besides being a medical problem, I might add this will soon be a tourism killer.
Um, this condition basically
Linda DiGusta New YorkUm, this condition basically IS a vaccine, it is an exposure to a trigger that then causes the immune system to attack something else. Better tick repellent and control could be a way to go!
Well put Linda. Interesting
Christine Kinsman West TisburyWell put Linda. Interesting argument on behalf of Mother Nature actually! I have had Lyme three times and assume it is a matter of time for AG because I live here year round (and love to walk in the woods!) Sounds like plant-based living is here. What ad adjustment. Thank you to all who continue to educate and help as we learn what this means.
You can view the recording of
Vineyard Haven LibraryYou can view the recording of Dr. Commins' presentation, along with our two-part series on Tick Ecology and Tickborne Diseases with Patrick Roden-Reynolds and Lea Hamner, by following this link on the library's Vimeo channel:
https://vimeo.com/showcase/11413322
I never thought I would have
Gabrielle West TisburyI never thought I would have to constantly worry about food and fumes...much more than a simple meat allergy...it's really depressing.
After pulling 110 lone star
JDFAfter pulling 110 lone star nymphs off myself in early September I started feeling horrible a few hours after eating. It took weeks and weeks of convincing and a physical doctors appointment off island to have an alpha gal test ordered. I was diagnosed with AGS, it’s horrible and depressing, everything makes you sick.
There is a component blood
Judith-anne West TisburyThere is a component blood test to test for meats,dairy,grains have also now been added,so you can tell just what to avoid. Even though you do not eat beef,it is hidden in many food and medicine products. You can see an Allergist, or incourage your Dr.’sOffice to order one for you if you test Positive to alpha-gal.
Does anyone know if Alpha Gal
John Thompson Shippensburg, PADoes anyone know if Alpha Gal is exploding in the southern US (where the Lone Star originated) as it appears to be on the Vineyard?
We live hear in Georgia. My
Kathy Waldrop MadisonWe live hear in Georgia. My husband has alpha-gal.
I finally had it confirmed
Sandra FloridaI finally had it confirmed here in Florida and it explains why I've had horrific gastric and reflux issues for almost five years. Finding a doctor in Florida who understands it is hard. See an allergist - that's the best starting point. Wish I'd known.
It's pretty common in our
Mrs. Smith Savannah, TNIt's pretty common in our area. I was diagnosed in late 2019. My parents (who live next to us) were recently diagnosed. I know at least 30 people personally who have it.
Yes it is exploding in AR, MO
Cathy ArkansasYes it is exploding in AR, MO and the Southeast. As well as many other states. Look at the membership of alpha gal Facebook groups as it’s large and growing. A senator in NJ introduced a bill to identify alpha gal on food labels due to the number affected in NJ. Please research and get involved as it’s an epidemic.
Had a couple of episodes way
Helen GeorgiaHad a couple of episodes way back in 2013-14. Did a ton of testing and was never diagnosed. If course no one knew what it was then. I found a tiny article in a magazine and told my endocrinologist but he dismissed it. Then my husband was bitten and had the same reaction after eating red meat. He was not diagnosed either. I'm a tick magnet but has taken precautions and not been bitten for a while. I'm kinda happy it made me stop eating red meat or pork.
I live in Northern Va and
Franci Bissett VirginiaI live in Northern Va and have it. My brother lives 3 hours away in southern Va and he has it.
My three grandchildren live
Tracey New JerseyMy three grandchildren live in Virginia and the youngest got it probably around three. She is 12 now. Thank God the acupuncture worked for them and their all eating meat and dairy again. I personally think it started there and started to come up North.
Here in the Midwest, The
Heather M MissouriHere in the Midwest, The Ozarks -Arkansas and Missouri are a hot bed for alpha gal. It's so bad that the dietitians at some of our grocery stores have developed AG safe tags for specific foods as well as monthly classes featuring products and recipes for those with AGS. It's common to have 30+ people in the class.
Have had it for 2 yrs now can
Robert Parks RuffinHave had it for 2 yrs now can't do any mammel meat or milk, cheese only birds and fish, seafood small amounts mess stomach up for half day, lots of gas never had before. Acupuncture helps some people hope to try it soon
I have Alpha Gal and live in
Christina OklahomaI have Alpha Gal and live in Oklahoma. The doctors here are not educated about the syndrome. When I had to stay in the hospital I felt like they were going to kill me. They said they had never heard of alpha gal syndrome
I've had this diagnosis since
Roberta Jane Young MissouriI've had this diagnosis since 2016
Symptoms go back as far as 2009 if not earlier
I want to know why this isn't a required allergen to label on food and products. I can't use lanolin or other cosmetics as well
https://www.congress.gov/bill
Marilyn Paquet Virginiahttps://www.congress.gov/bill/118th-congress/house-bill/9382/titles
This Bill was recently introduced to make AG a major allergen on food labels. Contact your Congressperson and ask them to cosponsor the Bill!
Health Insurers beware, this
JL FLHealth Insurers beware, this is an expensive allergy even after it’s diagnosed. Test after test and ER visits.
So in addition to red meat - Mammal gelatin, carrageenan, mammal glycerin, enriched foods and most pharmaceuticals contain the Alpha Gal carbohydrate making this a ‘land mine’ allergy.
Does the Vineyard have a deer
Brad b East Hampton nyDoes the Vineyard have a deer problem? Lone star ticks breed on deer. They should consider a cull. Why is their source not mentioned?
I've been on the side of
Mr. B ChilmarkI've been on the side of "culling" the deer population for years. But you can't beat the Bambi faction: "They're so cute!" Want to reduce the problem? The pain? (You won't eliminate it.): Then you will need to eliminate/delete/cull/kill thousands and thousands of the deer on the island.
Sounds like nature doing a
Anon AnonSounds like nature doing a bit of course correction.
Hello All, I was tested
Bryan Weisbecker FloridaHello All, I was tested positive for Alpha Gal Syndrome almost two years ago. It has been a significant food life changer! I am very fortunate to not yet be allergic to fumes or products such as leather. However, I have almost constant allergic responses from hives to IBS as a result of minor ingestion of something mammal or a related AGS allergen. We are always vigilant to check ingredients but still things slip by. As a crazy example of how far reaching this allergy can be, I am allergic to certain refined sugars as they are filtered through “bone char” in their production. This is a rather hefty hurdle in our lives but not one that cannot be overcome.
This!!!!!
Alissa KeenanThis!!!!!
I have alpha gal , 5 medical
Melissa Mayhall IukaI have alpha gal , 5 medical doctor's missed my diagnosis thank goodness my daughter a lab technician had been paying attention to my reaction and suggested I get tested and yes it was positive . But before my positive test I thought I was lactose intolerant and would take lactose pills and it would help digestion with milk . I have no longer drank milk , after the diagnosis.
Mother Nature is fighting
Natalie Amore Rhode IslandMother Nature is fighting back . It’s never safe to eat the corpses of animals . Animals carry too many diseases. Has anyone else read the China Study or the Diet For A New America by John Robbins ? Animals are not healthy food products or ingredients. We have a wide variety of healthy delicious natural foods to keep up strong . Follow Physicians Committee for Responsible Medicine on fcbk and YouTube.
My daughter and I have had it
Yvonne Whitley Suffolk, VirginiaMy daughter and I have had it for two years. I’m pretty sure I went undiagnosed for many years after seeing every doctor known to man having every test possible and allergy meds and shots for two years that never helped.
It’s definitely no fun.
Thank you , Vineyard Gazette
Andrew Keenan EdgartownThank you , Vineyard Gazette for one of the first AGS stories I have read that really speaks to how this allergy has significant long term effects and that all who contract this ailment suffer in quite disparate ways. Thank you , also, to all chiming in from far and wide with your stories of AGS. As one of the two diagnosed on MV in 2020 (and certain with hindsight I was ill with it for a few years before) all these stories sound painfully familiar. I have been telling everyone who will listen my AGS tale in hopes that they can avoid my difficult fate. The exponential growth of cases only confirms what I have been warning others of for years, this is going to reach deep into this community and few will be spared, whether through having it yourself or dealing with it because someone in your house suffers or your friends do. AGS is a life changer for sure, but it can be dealt with. Unfortunately the best way is to never eat anything you have not personally cooked or resolve yourself to hoping for the best and carrying an Epipen.
Went into anaphylactic shock
Kim MarylandWent into anaphylactic shock with hives at about 1am on monthers day weekend. Had a few pieces of meat lovers pizza at 6pm but never knew what the cause was until diagnosed in June with AGS. My allergist is diagnosing about 4 per week. Southern Maryland and Virginia is ridden with ticks which all can carry AGS, also lone star ticks and chiggers. It's a depressing syndrome, trying to avoid a lot of cross contamination. Hoping for a vaccine. Good luck everyone. Get an epi-pen and carry it everywhere with benedryl.
I am a summer resident of Oak
Peter Hoggan New JerseyI am a summer resident of Oak Bluffs. I got alpha gal from a lone star tick in the fall of 2023. I was very lucky because: 1. I read an article in the Gazette about it and 2. My GP here in NJ had heard about it. At my urging he ordered the blood work.
I am sure the numbers cited in this article are just the tip of the iceberg because of people like me. I am also sure that getting articles published in larger sources will help raise awareness and educate more doctors to this hard to diagnose allergy. Know anyone at the NYTimes?
Labor Day 2024, 350 lone star
Victor Colantonio ChappaquiddickLabor Day 2024, 350 lone star larvae bit my feet up to the knee. MV Hospital thought mites, blood tests confirmed AGS. What have I learned? Tick saliva is the source of AGS. Natural Pyrethrum is effective on clothing and at home. Alcohol and exercise increase reactive sensitivity. Dairy means all dairy including milk chocolates. “Fig” is a phone app that reads product bar codes. Enter AGS as the allergy and Fig instantly shows yes, no or caution to foods. Red seaweed algae used in processed food is reactive. Xolair infusion is proving to be an effective therapy. The ticks’ preferred vector, blood meal, are turkeys, they are turkey ticks. Massachusetts Fish & Game repopulated wild turkeys beginning in 1989. In 2024, MV’s turkeys thrive, turkey ticks thrive and AGS thrives.
A very important piece of Dr.
Lea Hamner (MV Epidemiologist) Chilmark, MAA very important piece of Dr. Scott Commins presentation that I would like to restate here is that he does NOT recommend universal Alpha Gal testing. Testing for Alpha Gal should be done *IF* you have symptoms suspicious of Alpha Gal Syndrome. Worried well are in fact worried well. Your immune system can develop antibodies to alpha gal and not cause you to develop the allergy. While there is no prescription cure to alpha-gal, some people do get over their allergy after 2-5 years of NO MORE tick bites. For Alpha Gal, tick-bite prevention is the cure. Check out the MV Tick Program Website for our prevention recommendations: https://www.mvboh.com/tickborneillness
The Hospital lab data is total *tests* performed and total positive tests. A single patient can get multiple tests in the course of the year to assess their immune response. It is not the number of "cases". We don't have a handle on that number yet but we are working on it.
AlphaGalInformation.org is also a wonderful resource. FIG App is a barcode scanning app that identifies alpha-gal containing foods as folks identify them (as pointed out by others, this is not federally regulated labelling but crowd-sourced identification of alpha-gal containing food).
Check out our 3-part series with the Vineyard Haven Library: https://vimeo.com/showcase/11413322
The comments here are a
Pamela Spencer Edgartown MAThe comments here are a excellent resource for the community at large. This is a relatively new disease and many, if not most doctors don't yet have the information for the day to day living with it. As with other chronic illnesses like ME/CFS, Fibromyalgia,POTS, MS, and now Alpha Gal, those living with it can be a comfort and a resource. Obviously, pay attention to what your doctor says but listen to your fellow patients.
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