social ostracization<\/a> and maddening repeated misdiagnoses.<\/p>\nSome said they unknowingly contracted the disease \u2014 which is spread by bites from the Lone Star tick \u2014\u00a0 everywhere from a park on Long Island to their own private driveway.\u00a0<\/p>\n
Alpha-gal syndrome is spread by bites from the Lone Star tick. ondreicka \u2013 stock.adobe.com<\/p>\n
Symptoms range from stomach pain to brain fog and even anaphylactic shock after contact with meat and mammal-derived products, including items as innocuous as shampoo, candy and Tylenol.<\/p>\n
To avoid the symptoms,\u00a0patients must adopt a diet so strict it would make a vegan Dr. Atkins blush, with some reacting just from the fumes of meat cooking.<\/p>\n
A frustrating mystery <\/p>\n
The mysterious illness hadn\u2019t yet made headlines in September 2019, when Courtney first started getting red, itchy rashes all over her body.<\/p>\n
\u201cIt looked like eczema at first. People said, \u2018Did you change your laundry detergent?\u2019 \u2018Are you stressed?’\u201d she said. \u201cI said, no, something is wrong.\u201d<\/p>\n
A rash on Courtney\u2019s leg after she unknowingly got alpha-gal syndrome. Obtained by the NYPost<\/p>\n
Courtney started getting rashes while she was pregnant. Obtained by the NYPost<\/p>\n
She soon got\u00a0\u201coozing\u201d skin inflammation, swollen lymph nodes, hives and heart palpitations so intense she had to stop working out \u2014 a major blow for the fit gym owner.<\/p>\n
\u201cI felt\u00a0like the whole world was attacking me,\u201d she said.\u00a0<\/p>\n
Over the next year and a half she saw 11 doctors \u2014 oncologists, allergists, surgeons, the works \u2014 none of whom could diagnose her.<\/p>\n
\u201cI\u2019d go from doctor to doctor and everybody blew me off,\u201d she said.<\/p>\n
It got so bad, she visited the ER five times, had a biopsy for lymphoma and one scheduled for bone marrow.<\/p>\n
Even her husband, Steve, who works as an ICU nurse, and was her fierce advocate, couldn\u2019t solve the mystery.<\/p>\n
\u201cI started wishing something was wrong so I didn\u2019t feel so crazy,\u201d she said.<\/p>\n
The hellish ordeal unfolded while she was pregnant and kept her from properly eating and sleeping. \u201cThe baby was small because I was afraid to eat,\u201d she said. \u201cI didn\u2019t sleep for nine months.\u201d<\/p>\n
\u201cLooking back, I was reacting to everything \u2014 toilet paper, sugar, glycerin in lotions and fabrics \u2014 because they were mammal-derived,\u201d she said.\u00a0<\/p>\n
\u201cI would have a bite of a cupcake and have a heart palpitation because of the sugar,\u201d she said,\u00a0adding refined white sugar is processed using bone char.<\/p>\n
A rash all over Courtney\u2019s back. Obtained by the NYPost<\/p>\n
Courtney wasn\u2019t able to get a proper diagnosis even after 11 doctor visits. Obtained by the NYPost<\/p>\n
After her hairdresser suggested in\u00a0February 2021 that she might have alpha-gal syndrome,\u00a0Courtney convinced her doctor \u2014 who had previously brushed off the possibility that it was \u2014\u00a0to test for it.\u00a0The test came back positive.<\/p>\n
Courtney now vaguely remembers finding a tick crawling on her neck in July 2019, months before any symptoms popped up, while standing in her driveway. But the bloodsucker never \u201clatched\u201d and may not have even fully bitten her, she said.<\/p>\n
\u201cI just flicked it away and never thought about it again,\u201d she said. \u201cYou can get it just from the tick\u2019s saliva.\u201d<\/p>\n
Living with alpha-gal<\/p>\n
Courtney now lives on a strict diet of eggs, chicken, salmon, rice and veggies and takes shots when she gets major flare ups.\u00a0<\/p>\n
After her diagnosis, however, she found herself avoiding\u00a0social settings because she didn\u2019t want to be seen as uptight or \u201cneedy\u201d about food.<\/p>\n
Courtney with her four sons. Obtained by the NYPost<\/p>\n
\u201cWhen it was fresh, it was depressing\u00a0 \u2014 I just wanted to stay home. I didn\u2019t want to go anywhere,\u201d Courtney said.\u00a0\u201cYou almost feel like a burden. I sometimes want to keep it a secret,\u201d she added.<\/p>\n
Now, she preps her food before get-togethers or travel, and researches the menus of restaurants to avoid cross-contamination of meat products.<\/p>\n
\u201cThe hardest thing was that I wasn\u2019t an average case,\u201d she said. \u201cI wish [doctors] would have taken me more seriously.\u201d<\/p>\n
The Crossfit gym owner now has to follow a strict diet to avoid triggering a reaction. Obtained by the NYPost<\/p>\n
Same Disease; varying symptoms<\/p>\n
Debra Schaefer, 63,\u00a0of Center Moriches,\u00a0on Long Island New York, was struck by a similar health scare while working as a summer camp counselor in August 2023.<\/p>\n
\u201cI had brain fog and then I felt very very sick.\u00a0I went to a walk-in doctor, who said, \u2018Your blood pressure is dangerously low, you need to go to an emergency room, now,’\u201d said Schaefer, who works with special needs kids.<\/p>\n
The emergency room doctor put her on an IV, gave her Benadryl and sent her home \u2014\u00a0but hours later, her blood pressure dropped dangerously low again.<\/p>\n
\u201cI realized later that I was in anaphylactic shock,\u201d she said of the life-threatening allergic reaction. \u201cIt\u2019s scary that the ER didn\u2019t know what was happening.\u201d<\/p>\n
Roughly six weeks later, a different doctor suggested she get tested for alpha-gal syndrome and the test came back positive.<\/p>\n
She then remembered her husband, Robert, had found a tick crawling on him at Terrell River County Park near their home in Center Moriches in July 2023.<\/p>\n
Robert, a 58-year-old insurance salesman, soon tested positive for the disease too.\u00a0<\/p>\n
\u201cMy reaction is hives \u2014 I get them from head to toe, and it will last weeks,\u201d he said.\u00a0\u201cIt\u2019s like poison ivy.\u201d<\/p>\n
\u201cI was getting it from taking Tylenol PM because it has glycerin in it,\u201d he said.<\/p>\n
The couple now eats a lot of chicken and vegetables and when dining out, they often play it safe by ordering vegan.<\/p>\n
\u201cWhen we go out, we really have to ask a lot of questions,\u201d Robert said.\u00a0\u201cI bring my vegan cheese to the restaurant with me.\u201d<\/p>\n
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When it comes to holiday meals or parties, they often opt to do the cooking, so they know what\u2019s in the dishes. Or they eat before they go.<\/p>\n
\u201cTurkey and chicken are okay but we have to be careful how it\u2019s prepared,\u201d said Debra. \u201cSocially, it\u2019s a pain in the neck.\u201d<\/p>\n
Even a lick from a dog can trigger an allergic reaction, along with cross-contaminated food such as restaurant french fries \u2014 but the flare-ups are largely under control due to their diet change.<\/p>\n
Ultimately, she said, the allergy is baffling because there\u2019s usually long delay between eating meat and the symptoms appearing.<\/p>\n
\u201cThey can come six to 10 hours after you eat,\u201d Schaefer said.\u00a0\u201cSo people don\u2019t connect that, \u2018I ate this and then I got sick.\u2019\u201d<\/p>\n
\u201cBig picture, if you\u2019re having any of these symptoms and you can\u2019t figure it out \u2014\u00a0go get tested.\u201d<\/p>\n","protected":false},"excerpt":{"rendered":"After the eleventh doctor couldn\u2019t figure out what was wrong with her, Ashley Courtney broke down sobbing in…\n","protected":false},"author":2,"featured_media":54280,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[6],"tags":[1015,5236,9,11,10,3610,29851,58],"class_list":{"0":"post-54279","1":"post","2":"type-post","3":"status-publish","4":"format-standard","5":"has-post-thumbnail","7":"category-new-york","8":"tag-deaths","9":"tag-diseases","10":"tag-new-york","11":"tag-new-york-headlines","12":"tag-new-york-news","13":"tag-public-health","14":"tag-ticks","15":"tag-us-news"},"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/us-ny\/wp-json\/wp\/v2\/posts\/54279","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.newsbeep.com\/us-ny\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.newsbeep.com\/us-ny\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/us-ny\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/us-ny\/wp-json\/wp\/v2\/comments?post=54279"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/us-ny\/wp-json\/wp\/v2\/posts\/54279\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/us-ny\/wp-json\/wp\/v2\/media\/54280"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/us-ny\/wp-json\/wp\/v2\/media?parent=54279"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/us-ny\/wp-json\/wp\/v2\/categories?post=54279"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/us-ny\/wp-json\/wp\/v2\/tags?post=54279"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}