Archive for the ‘Alpha Gal Meat Allergy’ Category

When Alpha-Gal Syndrome is NOT Related to a Tick Bite

https://www.lymedisease.org/alpha-gal-syndrome-no-tick-bite/

When alpha-gal syndrome is NOT related to a tick bite

Oct. 27, 2022

Typically, alpha-gal syndrome is associated with the bite of a lone star tick, and can result in a life-threatening allergy to red meat. But, according to Pamela Traina, the picture can be more complicated than that. She delivered the following public comments at the Oct. 25 meeting of the federal Tick-Borne Disease Working Group.

Good morning. My name is Pamela Traina. I am 55 years old and live in Los Angeles, California.

My alpha-gal diagnosis came three years ago after spending several years in and out of hospitals due to idiopathic anaphylactic reactions.

I was lucky to have an allergist who never discounted my unusual symptoms, negative allergy tests, and numerous anaphylactic reactions. It still took over two years to pinpoint the cause.

Alpha-gal is virtually unheard of in California because most people who have received an alpha-gal diagnosis live in the southeastern United States and have been infected due to being bitten by the lone star tick. The lone star tick is not found in California. I have not been to the southeastern United States and do not remember ever being bitten by a tick. Yet, I have alpha-gal syndrome. More research is required to pinpoint other possible vectors of how this condition is contracted.

Since my alpha-gal diagnosis, I have been diagnosed with multiple other food and medication allergies, including an uncommon allergy to PEG (polyethylene glycol) and polysorbate. Neither one has a diagnostic test. In addition, my Alpha-Gal test is now negative, but my sensitivity and reactions are still severe.

We need better testing, more education

Current testing is inadequate. We need more accurate testing for Alpha-Gal and other food allergies. We need answers as to why other allergies and conditions emerge after an alpha-gal diagnosis and what are the possible long-term effects of alpha-gal. We also need transparency on all medication and product labels to include inert ingredients.

Finally, hospitals and emergency staff must be educated to treat alpha-gal patients adequately. The hospital and emergency room are extremely dangerous for me due to a lack of awareness of alpha-gal.

I have had eight significant reactions since my alpha-gal diagnosis requiring er visits and hospital stays. I have endured numerous invasive and expensive tests while they search for the cause, discounting my alpha-gal diagnosis.

I have been asked if I was taking drugs and denied breathing treatments and Benadryl during a reaction because they were going to “observe” me since my symptoms didn’t present like typical anaphylaxis.

Education is required for all healthcare providers in the United States, including pharmacists, dieticians, doctors, dentists, and EMS providers, so they are aware of this condition and know how to treat it safely. It is so much more than an allergy to red meat.

Thank you for your time and the work you’re doing for the alpha-gal community.

_______________

For more:

9 EpiPens in a Month: The Burden of Lyme, AGS, & More

https://www.lymedisease.org/9-epi-pen-a-month-mccord/

“Nine EpiPens in a month.” The burdens of Lyme, AGS, and more.

Cortney McCord delivered the following public comment at the Oct. 25 meeting of the federal Tick-Borne Disease Working Group.

I’m Cortney McCord, a registered nurse from Tupelo, Mississippi. Since May 8, 2021, I have been in a battle for my life against alpha-gal syndrome, Lyme borreliosis, bartonellosis, babesiosis, and mast cell activation syndrome.

I developed the most severe clinical presentation of alpha-gal syndrome: I react to airborne and contact exposures as well as dietary exposures to alpha-gal.

For me, it’s way more than just a meat allergy.

In January 2022, my infectious burden grew after I contracted COVID. COVID sent me into full-blown mast cell activation syndrome and made asthma and chronic urticaria a part of my daily life.

After being gaslighted by a local allergist who was ignorant of mast cell activation syndrome and airborne alpha-gal reactions, I made an appointment with expert allergist and former Working Group member Dr. Scott Commins. I am thankful to have him in my corner even if it takes a 12-hour drive to see him..

Patients like me do not have the luxury of time to sift through a myriad of ignorant doctors to find someone familiar with their condition. Because symptoms of tick-borne infections, alpha-gal syndrome, and mast cell activation syndrome are manifested in every organ system, physicians in every medical discipline should be literate in these conditions. Nobody deserves to be gaslighted because of a lack of physician education.

Another tick bite

I was bitten by another larval lone star tick at the end of this past August. In September alone, I had to use nine EpiPens. All of this from a tick the size of a speck of dirt.

In addition to long Lyme, I believe I have long COVID complicating my clinical picture.

Long COVID and long Lyme are very similar. Both Sars-CoV-2 and Borrelia burgdorferi are persistent in tissues. Both affect the host’s immune system. Both can cause mast cell activation syndrome. The medical world has no problem saying that COVID is a persistent “long” disease. Why is that not the case for persistent ‘long” Lyme borreliosis? There are stacks of good science supporting persistent “long” Lyme infection–some of which was done by current working group member Dr. Monica Embers.

I refuse to believe that this is the best that our medical and scientific community can do. Testing for both mast cell activation syndrome and tick-borne diseases is abysmal. That has to change. There should be a law requiring alpha-gal to be listed as a major allergen on every medicine, food, and consumable product that Americans have contact with. We need the Tick-borne Disease Working Group to continue in perpetuity because tick-borne conditions will affect more and more Americans as our planet warms.

Please help me. Ask Congress to address these needs. Thank you.

_________________

**Comment**

This is truly a complicated case, but most are in my experience.

While all patients deserve to be heard and treated properly, throwing yet more money at the TBDWG which is filled with people who do not believe in chronic infection, and which has done ZERO to help  patients is not helpful.  IF, and I mean IF any money is appropriated to study this, IMO – whoever is doing the work needs needs to be independently funded.  Researchers can not be the regular cast of characters – receiving grants from corrupt public health agencies, that is literally a Cabal regurgitating old, outdated, highly myopic work which is designed for a pre-determined outcome and completely ignores a huge subset of people.

Unfortunately many patients and even advocates are oblivious to the sordid backstory of the corrupt agencies controlling research and funding.  Insanity truly is doing the same thing over and over and expecting different results.  Time to ditch the public health monopoly and public health agencies controlling research, funding, doctors, testing, treatments, and “vaccines.”

For more:

National News Turns Spotlight on Tick-borne Meat Allergy

https://www.lymedisease.org/national-news-alpha-gal/

National news turns spotlight on tick-borne meat allergy

Alpha-gal syndrome is a life-threatening allergy to red meat and meat-related products that is triggered by the bite of a lone star tick.

Recently, AGS has caught the attention of major US news media outlets.

Here’s a sampling of recent coverage:

For more:

“Super-Fast” Lone Star Ticks Showing up in New Places

https://www.lymedisease.org/lyme-sci-super-fast-lone-star-ticks-are-showing-up-in-new-places/

LYME SCI: “Super-fast” lone star ticks are showing up in new places

March 30, 2022

By Lonnie Marcum

The lone star tick (Amblyomma americanum) has been rapidly expanding its range, from the Southern United States into the Northeast and Midwest.

This tick is a major vector of several viral, bacterial, and protozoan pathogens affecting humans, pets, livestock, birds and other wild animals in the United States. In some Midwestern states, it is commonly known as the “turkey tick” due to its association with wild turkeys. (Childs and Paddock, 2003)

Currently, the lone star tick is known to transmit human ehrlichiosis, tularemia, Heartland virus, Bourbon virus, Southern tick-associated rash illness (STARI) and rarely Rocky Mountain spotted fever—one of the deadliest tick-borne diseases in the US.

People bitten by a lone star tick may also develop alpha-gal syndrome—a severe allergy to meat and meat-related products.

A recent crowdsourced science project has documented the largest increase of the lone star tick in decades. Researchers documented new tick encounters in over 300 counties—including six new counties in western states—where these ticks had not been documented before.

TickSpotters program evaluates photos

In a study published in the Journal of Medical Entomology, researchers at the University of Rhode Island (URI) evaluated over 9,500 photos submitted between 2014-2019 to the TickSpotters surveillance program.

To document the changes, researchers first identified the ticks in the submitted photos, then logged the county each was reported from. They used this method to plot the geographic ranges of three medically important U.S. tick species: Amblyomma americanum, Ixodes scapularis and Ixodes pacificus. The last two are the vectors for Lyme disease.

More than 5,000 photographs of the lone star tick were received from over 1,000 counties across the US. Of those, 341 counties had no previous record of lone star ticks. The largest expansion of the lone star tick was seen in Illinois, Indiana, Kentucky, and Ohio.

In addition, the lone star tick was reported in several counties in the western US, a region not typically associated with these ticks. Notably, it was found in six new counties in California, four counties in Colorado and one new county each in Idaho, Oregon and Utah.

“The causative drivers of these upturns are complex, but have a lot to do with increased host availability, warming temperatures, and moisture availability,” researcher Heather L Kopsco, PhD, told Entomology Today,

Female lone star ticks are identifiable by a single silvery-white spot on the center of their back (scutum.) The male lone star tick is slightly smaller, with varied white streaks or spots around the margins of its body.

Finding Heartland virus in Georgia

Another recent study published in the CDC journal “Emerging Infectious Diseases” found lone star ticks infected by Heartland virus in Georgia. The article points out several major knowledge gaps and the complexity of diseases carried by the lone star tick. (Romer et al, 2022)

“Heartland is an emerging infectious disease that is not well understood,” says Emory University’s Gonzalo Vazquez-Prokopec PhD, senior author of the study.

Interestingly, the genetic analysis of the Heartland virus from Georgia shows that it is 2%-5% different from previous genetic sequences of the virus.

“These results suggest that the virus may be evolving very rapidly in different geographic locations, or that it may be circulating primarily in isolated areas and not dispersing quickly between those areas,” Vazquez-Prokopec says.

The Heartland virus wasn’t officially named until 2009. However, the CDC has since found evidence of it in wild animals in at least 13 states, including stored samples from deer dating back to 2001. (Clark et al, 2018)

Because the initial symptoms of these tick-borne viruses resemble the flu, and tests for it are not readily available, it is likely being undetected and underreported in humans.

Quick and aggressive

The lone star tick moves quickly and aggressively, says Thomas Mather, PhD, Director of the TickEncounter Resource Center and co-author of the URI study.

“It is super-fast. It can move from below your knees to the top of your head in a matter of seconds.” Mather says it is the tick most frequently found attached to humans in the South.

The greatest risk of being bitten by the adults exists in early spring through fall. Lone star ticks are found mostly in woodlands with dense undergrowth and around animal resting areas, where they will quest on tall grass and low hanging branches.

Nymphal ticks quest lower to the ground but also move fast. If you encounter a patch of larvae, you’ll find they may latch on by the hundreds. Tick Encounters recommends using sticky duct tape to remove these larvae as soon as possible.

Expanding range

The range of the lone star tick in North America has increased dramatically over the past 30 years. Large numbers have been recorded as far to the northeast as Maine, as far to the southeast as Florida, as far south as Mexico and as far west as Colorado. Recently, patchy encounters have also been noted in Canada and the West coast.

Diseases carried by lone star ticks

The following is a list of symptoms of diseases caused by the bite of the lone star tick per the CDC.

Alpha-gal Syndrome (AGS)

Reactions can include:

  • Rash
  • Hives
  • Nausea or vomiting
  • Heartburn or indigestion
  • Diarrhea
  • Cough, shortness of breath, or difficulty breathing
  • Drop in blood pressure
  • Swelling of the lips, throat, tongue, or eye lids
  • Dizziness or faintness
  • Severe stomach pain

Symptoms commonly appear 2-6 hours after eating meat or dairy products, or after exposure to products containing alpha-gal (for example, gelatin-coated medications). Personal products that use ingredients containing “hydrolyzed protein,” lanolin, glycerin, collagen, or tallow are particularly problematic.

AGS reactions can differ from person to person and range from mild to severe. Anaphylaxis (a potentially life-threatening allergic reaction involving multiple organ systems) may need urgent medical care.

People may not react after every alpha-gal exposure.

Seek immediate emergency care if you are having a severe allergic reaction.

Bourbon Virus

Scientists are still learning about possible symptoms caused by this virus.

People diagnosed with Bourbon virus disease had symptoms including:

  • fever
  • tiredness
  • rash
  • headache
  • other body aches
  • nausea, and

Patients with Bourbon virus will have low blood counts for cells that fight infection and help prevent bleeding.

There is no medicine to treat Bourbon virus disease. Doctors can only treat the symptoms. For example, some patients may need to be hospitalized and given intravenous fluids and treatment for pain and fever. Antibiotics don’t work against viruses.

Ehrlichiosis

Signs and symptoms of ehrlichiosis typically begin 1-2 weeks after the bite of an infected tick. Left untreated, ehrlichiosis can be fatal. Early treatment with doxycycline is highly effective.

Early signs and symptoms (the first 5 days of illness) are usually mild or moderate and may include:

  • Fever, chills
  • Severe headache
  • Muscle aches
  • Nausea, vomiting, diarrhea, loss of appetite
  • Confusion
  • Rash (more common in children)

About a third of people with ehrlichiosis report a rash, which can look like red splotches or pinpoint dots. This typically develops five days after the fever begins.

Early treatment can reduce your risk of developing severe illness, which can include:

  • Damage to the brain or nervous system (e.g. inflammation of the brain and surrounding tissue (called meningoencephalitis))
  • Respiratory failure
  • Uncontrolled bleeding
  • Organ failure
  • Death
Heartland Virus
  • Most people infected with Heartland virus experience fever, fatigue, decreased appetite, headache, nausea, diarrhea, and muscle or joint pain. Many require hospitalization.
  • Some people also have lower than normal counts of white blood cells (cells that help fight infections) and lower than normal counts of platelets (which help clot blood). Sometimes, liver enzymes are elevated.
  • It can take up to two weeks for symptoms to appear after an infected tick bite.
Rocky Mountain Spotted Fever

Early signs and symptoms are not specific to RMSF. However, the disease can rapidly progress to a life-threatening illness.

Signs and symptoms can include:

  • Fever
  • Headache
  • Rash
  • Nausea
  • Vomiting
  • Stomach pain
  • Muscle pain
  • Lack of appetite

While almost all patients with RMSF will develop a rash, it often does not appear early in illness, which can make RMSF difficult to diagnose. RMSF rash usually develops 2-4 days after fever begins. The appearance of the rash can vary widely. Some rashes look like red splotches and some look like pinpoint dots.

Some patients who survive severe RMSF may be left with permanent damage, including amputation of arms, legs, fingers, or toes (from damage to blood vessels in these areas); hearing loss; paralysis; or mental disability.

Southern tick-associated rash illness (STARI)

It is not known whether antibiotic treatment is necessary or beneficial for patients with STARI. Nevertheless, because STARI resembles early Lyme disease, physicians will often treat patients with oral antibiotics.

The rash of STARI is a red, expanding “bull’s-eye” lesion that develops around the site of a lone star tick bite. The rash usually appears within seven days of the tick bite and expands to a diameter of three inches or more. The rash should not be confused with much smaller areas of redness and discomfort that can occur commonly at the site of any tick bite.

Patients may also experience fatigue, headache, fever, and muscle pains. The saliva from lone star ticks can be irritating; redness and discomfort at a bite site does not necessarily indicate an infection.

Tularemia

The signs and symptoms of tularemia vary depending on how the bacteria enter the body. Illness ranges from mild to life-threatening. All forms are accompanied by fever, which can be as high as 104 °F.

“Ulceroglandular” is the most common form of tularemia and usually occurs following a tick or deer fly bite or after handing an infected animal. A skin ulcer appears at the site where the bacteria entered the body. The ulcer is accompanied by swelling lymph glands, usually in the armpit or groin.

LymeSci is written by Lonnie Marcum, a Licensed Physical Therapist and mother of a daughter with Lyme. She serves on a subcommittee of the federal Tick-Borne Disease Working Group. Follow her on Twitter: @LonnieRhea  Email her at: lmarcum@lymedisease.org.

References

Childs JE, Paddock CD. (2003) The ascendancy of Amblyomma americanum as a vector of pathogens affecting humans in the United States. Annu Rev Entomol. 48:307-37. doi: 10.1146/annurev.ento.48.091801.112728. Epub 2002 Jun 4. PMID: 12414740.

Clarke, L. L., Ruder, M. G., Mead, D. G., & Howerth, E. W. (2018). Heartland Virus Exposure in White-Tailed Deer in the Southeastern United States, 2001-2015. The American journal of tropical medicine and hygiene, 99(5), 1346–1349. https://doi.org/10.4269/ajtmh.18-0555

Guzmán-Cornejo C et al (2011) The Amblyomma (Acari: Ixodida: Ixodidae) of Mexico: identification keys, distribution and hosts. Zootaxa 2998:16–38

Kopsco HL, Duhaime RJ, Mather TN. (2021) Crowdsourced Tick Image-Informed Updates to U.S. County Records of Three Medically Important Tick Species. J Med Entomol.  11:tjab082. doi: 10.1093/jme/tjab082. Epub ahead of print. PMID: 33973636.

Monzón, J. D., Atkinson, E. G., Henn, B. M., & Benach, J. L. (2016). Population and Evolutionary Genomics of Amblyomma americanum, an Expanding Arthropod Disease Vector. Genome biology and evolution, 8(5), 1351–1360. https://doi.org/10.1093/gbe/evw080

Riemersma KK, Komar N. (2015) Heartland Virus Neutralizing Antibodies in Vertebrate Wildlife, United States, 2009-2014. Emerg Infect Dis. 21(10):1830-3. doi: 10.3201/eid2110.150380. PMID: 26401988; PMCID: PMC4593439.

Romer, Y., Adcock, K., Wei, Z., Mead, D. G., Kirstein, O., Bellman, S….Vazquez-Prokopec, G. M. (2022). Isolation of Heartland Virus from Lone Star Ticks, Georgia, USA, 2019. Emerging Infectious Diseases, 28(4), 786-792. https://doi.org/10.3201/eid2804.211540.

Springer YP, Eisen L, Beati L, James AM, Eisen RJ. (2014) Spatial distribution of counties in the continental United States with records of occurrence of Amblyomma americanum (Ixodida: Ixodidae). J Med Entomol. Mar;51(2):342-51. doi: 10.1603/me13115. PMID: 24724282; PMCID: PMC4623429.

Steinke J, Platts-Mills T, Commins, S. (2015) The alpha-gal story: lessons learned from connecting the dots. J Allergy Clin Immunol. 135(3): 589-96.

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**Comment**

Great, informative article.  I disagree with the notion that the climate is causing tick movement and proliferation of disease – here’s why:

Ticks will be the last species on the planet besides the IRS.

Patients With Alpha-Gal Syndrome Report Wide Range of Symptoms

https://www.lymedisease.org/alpha-gal-syndrome-survey/

Patients with alpha-gal syndrome report wide range of symptoms

By Alexandra Todak, Healio.com

March 7, 2022

Patients with alpha-gal syndrome reported many physical and mental effects along with a profound quality-of-life impact, according to survey results presented at the American Academy of Allergy, Asthma & Immunology Annual Meeting.

Understanding the vast range of symptoms that can indicate alpha-gal syndrome (AGS) — the first known carbohydrate-based allergy to mammalian-derived ingredients, which is associated with tick bites — is essential for diagnosing clinicians, according to the researchers.

“A lot of health care providers still are not aware of AGS, and providers who are aware of it do not understand the full range of symptoms,” Jennifer Platt, DrPH, cofounder and director of Tick-Borne Conditions United.

“AGS impacts every body system. Many patients are still told, ‘it’s all in your head,’ prescribed anxiety/depression medication, and sent on their way.” READ MORE