Alpha-Gal Syndrome | Hacker News Reader

Alpha-Gal Syndrome

mayoclinic.org

241 pointsx14km2d143 comments

My wife had this from late 2007 until mid 2009 and nearly died from it. She was one of the early, benchmark cases. We went to Mayo clinic in Rochester in the summer of 2008 and they had no luck identifying her symptoms.

An exceptional allergy doctor near our home in Arkansas did endless research and mostly figured out what was going on.

After my wife came off of beef in mid 2009 her symptoms completely disappeared.

Prior to that, she was extremely ill, on 24 hour O2.

In fact she had picked out the location on our property where she wanted to be buried.

I'm going to bed but I'll be happy to answer any questions in the morning.

How often was she eating beef before mid 2009? Thanks and sorry that you all went through this.

Don't recall exactly, certainly not much, because at the time she preferred a very green, vegan diet. She would eat steaks with me from time to time.

12 years on, does she still have reactions if she eats beef? Does she (or maybe did she) have any reactions to other mammal proteins (milk, pork, etc)?

i seriously doubt that she would risk testing this out

I upvoted you, don't know why others have downvoted.

It took us both years before we even considered testing her reaction again because of how bad it was before.

She started eating beef again about three years ago, very slowly at first. Of course she had a tremendous fear of doing so, but was able to get past it to experiment.

This was also driven by some long term low to very low iron levels, and supplements weren't doing the job. She had to get some iron infusions, which isn't a pleasant procedure.

Once she started eating beef again, her iron levels came right up.

In fact we just got back from Safeway with several pounds of medium lean ground beef for dinner tonight and tomorrow.

What does her diet look like now? Has her health improved with a meat less diet?I worry if I get this I won't be able to eat much at all, already have celiac disease and lactose intolerance.

My neighbor has this and she said that she can still eat Chicken and Seafood.

Her diet and health are now exceptional. Her diet includes beef a couple times a week because she struggles with iron deficiency.

That's wild - so glad you guys figured it out in time.

What was the process like of narrowing it down first to an allergy, and then to beef (?!)? Was there a protocol in place or was your doctor pretty much improvising?

The process was chaotic and 'improvising' is certainly an appropriate characterization.

In truth, the awesome doctor only lightly suggested this as a possibility. I worked with her (the doc) pretty closely. We were both reading large volumes of medical studies, and creatively coming up with things to test/check for. My wife was too sick to substantively participate. She was also taking care of our young, autistic son.

I suggested to my wife that she cut out all mammal proteins, and she was fine with it, just to try. We got lucky and her symptoms cleared up in a few weeks.

So I take it she didn't react right away or you would have figured it out.

She didn't take a bite of beef and immediately feel something go wrong. She just slowly declined over time after the bite of beef?

From the article (not that far in!): Signs and symptoms of an alpha-gal allergic reaction are often delayed compared with other food allergies.

In agreement with the other reply: the symptoms came on fairly slowly, though for some reason the symptoms left quite quickly when she stopped eating beef.

What a coincidence.

I was bitten by a lone star tick last week. I didn't notice it until several days later when I found it fully engorged. I did check myself entirely after I was in tall grass, but I think it was stuck to my clothes and bit me later on.

I sent it in to the PA tick research lab[0] and it came back negative for the presence of Lyme disease, ehrlichiosis, tularemia and RMSF. It seems as though they can't test for Alpha-Gal presence. Pretty cool service though and it's largely free for PA residents (only ~$50 for the basic panel for any other state). I overnighted it and they had it tested within ~36 hours of receiving it[1]. I mostly sent the tick in for "science", and because I was generally curious.

From my reading, it takes ~30 days for the allergy to begin showing itself. I'm not panicking, but I'd be remiss not to ask – is there anything I can do ahead of time to prevent the allergy's development? I couldn't find much documentation on if there are any preventative measures after finding the tick. I discovered this last week while searching and went down a bit of an internet rabbit hole. It's pretty fascinating and information on it is thin.

Avoiding red meat would be annoying, but I think the real trouble comes from the cross contamination factor[2], i.e. you eat something that was prepared in the same environment as red meat. And since the allergy has a delayed reaction you may not realize it until 6 hours later, when it's no longer on your mind and may be asleep. Some people can't even eat fatty dairy products like ice cream.

[0] https://www.ticklab.org

[1] For those curious what a result looks like: https://i.imgur.com/kFoyasw.png and https://i.imgur.com/gMsuhXZ.png

[2] https://www.reddit.com/r/alphagal/comments/gule7q/how_much_d...

Alpha-gal light sufferer here - light because my reactions are usually somewhat light hives, however I also have practiced avoidance nearly perfectly for years. I'll try to answer your questions, but I'm not a medical professional so this is not medical advice etc etc.

What to do in the meantime until the 30-days the allergy takes to develop? 100% avoidance of all things you mentioned would probably be safest.

Why avoid? There are many anecdotes of the allergy fading with enough time when you practice alpha-gal avoidance. So starting IMMEDIATELY and never having a post-tick bite alpha-gal reaction may stop reinforcing the behavior in your immune system even faster. That one theory of how this allergy supposedly fades with time, is its sort of forgotten and dropped from your immune 'defenses' but that maybe not right.

Regarding Dairy, I personally haven't had much problem with cheeses however high fat milks and sour cream kick my ass usually. More processed stuff like cream cheese surprisingly was ok. I believe I read other's online anecdotes supporting what my body has shown to be true also, cooked dairy is usually OK for whatever reason, a similar phenomenon to young kids dairy allergies where they can have it cooked in dishes. But again you may want to do 100% avoidance diet and slowly reintroduce, a standard allergy practice.

RE: cross contamination. Again I'm not a highly sensitive alpha-gal sufferer but I haven't had many issues with this. It would probably be a problem if someone used bacon grease to cook instead of a regular vegetable oil. I've stopped worrying too much about this when I dine/order out and have been OK. I put that energy making sure what I'm ordering doesn't have any hidden beef/pork like in broths of soups.

I wonder if completely abstaining from any red meat for a year would be enough to reduce whatever antibodies are being created to the point where you could eat red meat again.

Most anecdotes I read said the 8-15 year (I'm year 9) scale for the allergy to fade if at all, I don't recall what they said they had for reactions/accidental allergen dosages during their years though.

Accidental allergen exposures happen once in a while, as you get used to the diet and learn hidden sources of allergen, they happen less. There's been no point in time when I thought I had to test if the allergy had gone away yet because I can usually remember a recent small or big hive from the past year. Right now I think I'm at least 1.5 year without hives, probably thanks to quarantine forcing a more controlled diet.

Since about my second year of being allergic I've been very well adjusted to my fish/bird meat only diet and have no insatiable desire for a steak so I'm OK waiting another few years before purposefully trying anything dangerous.

More research is needed, my anecdotal experiences is that different people have wide differences in the way that they react to alpha gal.

I know someone who went into full anaphylaxis from inhaling aeroplane food on a flight, requiring both injectors, they were in their late 40s.

I know someone who was able to reintroduce cheese and that worked for them.

The variance and time to affect seems to vary depending on the person.

My ex partner has a reaction petting my dogs who've been running out in the yard rolling in wallaby poop.

It's bloody awful affliction :( It prevents you from being able to enjoy many activities that most people take for granted.

The good thing is bird is pretty versatile! Duck is amazing, where I live you can buy duck chortizo. Groups I've joined on Facebook that are USA based are doing Emu briskets!

My ex goes and gets a test every once in a while that measures some level that they can use to tell if it's getting better or worse.

The crazy thing is that the local schools ban peanut butter but a sausage sizzle as they're called here (cooking like 50 sausages at a time for a fundraisers) are all totally OK, despite the allergy being an ongoing issue for the local area (just like in the USA, it's localised).

Contrary to what the other poster says, I think the right response might actually be to continue eating meat, albeit perhaps in smaller amounts (or with an epi-pen/benadryl nearby) depending on how you feel. Assuming the bite is an initial 'innoculation' to prime the allergic response, you would want to now train your body that alpha-gal is an OK thing (because, see how much of it is in my diet?!). We still have so much to learn about the immune response, but one thing thats becoming apparent is that allergies are caused by not priming our immune system enough (think too sterile home environments, avoidance of peanuts during early childhood). Even with severe peanut allergies they've found that relief can be had by introducing minuscule amounts of peanut to sufferers over a prolonged time period, like allergy shots[0]. Waiting out your antibody readiness might literally take forever (e.g. think measles vaccine)

[0] https://www.mayoclinic.org/diseases-conditions/peanut-allerg...

My dad got Alpha-Gal a few years back and is now severely allergic to beef; recently he ordered the impossible whopper at Burger King and got the same allergic reaction, suggesting either a mix-up or some serious contamination. He was fine but it's no joke, can cause anaphylaxis, etc.

Side note, here's a free idea for a book: ecoterrorists conduct underground gain-of-function research on Alpha-Gal, making it transmit from person to person rather than from tick to person, with the goal of reducing red meat consumption and carbon emissions. Your protagonist could either be a Marion-Cotillard-in-Contagion type scientist trying to figure it out, or a Marion-Cotillard-in-Batman type zealot who truly believes that this syndrome offers mankind's salvation.

This idea was inspired, obviously, by my dad's experiences and recent speculation into Covid's origins: https://www.vanityfair.com/news/2021/06/the-lab-leak-theory-...

BK always cooks The impossible whopper patties on the same grill as everything else unless you ask them to microwave it. I think they mention this on their website, but I'm not sure how obvious it is in-store, or if it's even mentioned there at all.

> Side note, here's a free idea for a book: ecoterrorists conduct underground gain-of-function research on Alpha-Gal, making it transmit from person to person rather than from tick to person

I would hack into a covid vaccine factory and modify the mRNA code so it produces the spike protein and the alpha-gal protein.

Alpha-gal is a sugar, so this wouldn’t work directly. Also, the syndrome seems to be IgE-mediated, and the mRNA vaccines are intended to induce IgG and perhaps IgA production. So this might not work.

But we could force the cells to produce alpha-gal via mRNA, right? And once the alpha-gal is in the bloodstream, the end result is the same as if it would have been injected by the tick, a immune reaction.

Seems unlikely. Read the review article linked elsewhere:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6554561/

Alpha-Gal syndrome is characterized by IgE (allergic) antibodies, and the mechanism that induces them is complicated. Merely putting an antigen into your body doesn’t do it.

Ah, now I understand. Yes, it's more complex than simply having alpha-gal in your bloodstream.

At least then the paranoia about taking the vaccine would be legitimate.

I immediately had the same spy thriller novel idea!

It is interesting you don't think the zealot could be the protagonist.

The novel idea reminds me a bit of the Greg Egan short story The Moral Virologist[0] in his collection Axiomatic.

"John Shawcross is a fundamentalist Christian who is disappointed that safe sex has limited the spread of HIV/AIDS, which he considers to be God's punishment for sexual immorality; consequently, he becomes a virologist, so that he may create a new, more lethal virus."

[0] https://en.wikipedia.org/wiki/The_Moral_Virologist

Text of the story is here[0], as linked from Wikipedia.

[0] http://www.gregegan.net/MISC/MORAL/Moral.html

It's also kind of the plot of Dan Brown's 'Inferno', per wikipedia:

> Brooks explains that Zobrist was a geneticist who advocated the halting of humanity's growth, and that he... had supposedly developed a new biological plague that will cause infertility in a third of the worlds' population, in order to solve the problem of the world's impending overpopulation... ...The plague that Zobrist created is revealed to be a vector virus that randomly activates to employ DNA modification to cause sterility in one third of humans.

Close enough! it's hard to have an original idea

I had a very similar idea, but I was thinking it'd be potentially employed against a geopolitical adversary with a large population and a tight or net import food supply. It could further put strain on the government to cope, thus reducing their threat.

Lack of protein in population diets probably also greatly reduces economic output.

Scary stuff, and anyone could use it against us.

You wouldn't even need gain of function. Just a more efficient vector. It seems almost impossible to get a virus to code for a carbohydrate pathway, and it would quickly be evolved out since it doesn't mediate adhesion or any critical function. Granted, there's a similar problem with supplying the alpha-gal in a parasite pathway.

Low tech air dropping lone star ticks seems like it would still produce the desired effect for the aggressor. And it'd be geographically limited impact unless the species spreads over time.

Biological warfare could be terrifying. We've just seen the first accidental use of it (assuming lab leak is what happened).

Back when I was a biochemistry student I had less scary thoughts, such as tranfecting the THC biochemical pathway into Kudzu to make it impossible to control. (I'm not into drugs but think the drug war is a drag on the US and its neighbors.)

Biology is like the computing field, it's just not as completely developed and fast paced. That could change in the future.

edit: again hit with the HN posting rate limit, and I'm not even downvoted. I think I have interesting insights given my background, but whatever. :(

Contamination is a huge problem with this allergy, and most kitchens don't understand or don't care. You pretty much learn that eating out is too dangerous.

Those who end up with this allergy pretty much have to not eat out, as the risk is too high. Imagine not being able to eat out?

Imagine not being able to travel! It's the worst!

I found this podcast [0] by Radiolab on the topic to be quite the eye opener. (ear opener?)

[0] - https://www.wnycstudios.org/podcasts/radiolab/articles/alpha...

I guess, it made you look differently at a certain aspect(s) of the world. So, I guess, still an "eye opener" despite the medium :)

Guess what? It's glycotime again!

Gal(ɑ1,3)Gal (Galili epitope) is a common epitope in most animals, but in primates we lost the activity of the gene (GGTA1) to synthesise it. Since we don't produce it any more, it's recognised as foreign by our body and not only causes rejection in xenotransplantation, but also this Alpha-Gal allergy.

I'm not going to comment on the actual immune mechanisms that take place with developing an allergy to a carbohydrate epitope, beyond saying that I don't understand enough of it. Somehow we lose the tolerance to this antigen that we develop from about 6 months of life.

I'm more interested in what makes this epitope: Is this carbohydrate synthesised by the actual ticks, or is it actually something to do with a tick-associated parasite or the microbiome? Here's a review (https://pubmed.ncbi.nlm.nih.gov/31214181/) that covers this that I quickly found, suggesting that (a member of) the microbiome can in fact alter levels of ɑ-Gal from ticks.

edit: Obviously, the solution to this problem would be to just eat primate meat instead, which is one hell of a risky bet given our problematic pandemic primed populations.

Also fascinated by the fact that it's possible to lose tolerance to something you've ostensibly recognized as "okay" for most of your life, but I mostly wanted to just say that "problematic pandemic primed populations" got a hearty chuckle out of me.

Well, allergies are almost always "something you tolerated most of your life (until then)" ... in my understanding you're not born with immune-intolerance to something (although you are most certainly born with a disposition or lack thereof), and not always is the manifestation of an allergy your system's first encounter with that specific protein - it is simply chance.

E.g. the possibly most prevalent allergies, against pollen, manifest well after kindergarten, or even in teenagers. Until then the system did not care at all about pollen. The reason must be something entirely unrelated to pollen. And there are more and more cases of people developing pollen allergies well after age 50! (But: often you will find other allergies or "pre-symptoms" in kids, e.g. neurodermatitis or milk-protein allergies).

In fact you always develop the allergy on exposure AFAIK - it just might be the first exposure. But the reason is most often completely unrelated to this specific substance/protein.

There are even several known substances that are known to cause allergies to develop on exposure (with high probability). But what you become allergic to is pure chance, e.g. could be the nickel-plated jewelry on your skin which you never had a problem with until then.

All food allergies can work like this, as do with other immune malfunctions like celiac disease. Having the allergies/autoimmune sensitivity from birth is not as common as developing them later on. It can happen at any time in life! Most people tolerate the allergen for some period of time, and then their immune system’s response changes for reasons unknown.

I have allergies to shellfish and tree nuts (plus celiac disease - gluten) diagnosed/developed later in life, along with oral allergy syndrome which sometimes causes a painful reaction to a wide range of foods, but only sometimes (depends on immune state). While I’ve never had an anaphylactic reaction, my allergist prescribed an EpiPen, saying the reactions often increase in severity suddenly with no warning.

> Obviously, the solution to this problem would be to just eat primate meat instead

What if we gene-edited our babies to have GGTA1 again from birth?

Short answer is we probably don’t know what will happen.

Long answer: We probably lost the enzyme activity during a fight with some pathogen. The truncated protein is still produced, and there are effects in the body if that is removed. So, putting it back (under the same expression programming) might do nothing bad, or it might break all the other hacks we’ve accumulated since we first lost the enzyme, or it might not protect against this allergy, or we might be more susceptible to some bacterial beastie that we should really mount immune responses to. Don’t think anyone has tried activating it again in any animal/model system.

Sounds like a natural bio-weapon waiting to be used by a vegan extremist group.

There was an interesting Defcon talk on potential threats from genetic engineering that touched on this exact scenario.

[0] https://youtube.com/watch?v=HKQDSgBHPfY

Calling it "alpha gal" is too on-the-noise, but it would make a great sci-fi plot.

Girlboss syndrome.

It sounds like a joke, but this exact thing was discussed at the world science festival as a way to get people to stop eating red meat. https://twitter.com/spinte8/status/1407258675358715907

How funny, there's a second video with an argument that I like to make as a joke/thought experiment: https://twitter.com/spinte8/status/1407263430030020610

What I usually says is something like this: if we're all equal no matter our physical differences, shouldn't we aim to have the smallest population possible? We would consume less food for the same output.

I have a friend with this. He pointed out to me that, technically, he can eat red meat as long as it's primate. We are apparently the only mammals without the protein in question that causes the allergic reaction. I believe I explained to him about prions, just in case he got any ideas...

I swear I had this like 2 years ago after getting several tick bites. I got hives and nausea from eating flame broiled burgers at a certain restaurant and generally felt bad after eating most meat after never having issues my whole life. Seems to have gone away after a course of antibiotics strangely so guessing it’s bacteria related.

The article explores this a bit, specifically with ticks.

> Ticks that cause alpha-gal syndrome are believed to carry alpha-gal molecules from the blood of the animals they commonly bite, such as cows and sheep. When a carrier tick bites a human, the tick injects alpha-gal into the person's body.

> For unknown reasons, some people have such a strong immune response to these molecules that they can no longer eat red meat or products made from mammals without a mild to severe allergic reaction. People who are exposed to many tick bites over time may develop more-severe symptoms.

More an allergy than anything else. Allergies can go away over time, but it'd be a surprise if your case was specifically remedied by antibiotics if you had alpha-gal syndrome.

For what it’s worth, antibiotics can be immunomodulating: https://dx.doi.org/10.4103%2F0019-5154.190105

https://europepmc.org/article/med/12054075 – review and citation context of book, book found here: https://link.springer.com/book/10.1007/b137084

... and since we've set out on the topic, there are many curious things that are immunomodulators / immunosuppressants / anti-inflammatory, such as the cis-isomer of urocanic acid which is found on human skin. The ultraviolet radiation in sunlight changes trans-urocanic acid into cis-urocanic acid, which is immunomodulatory via serotonin receptor 5-HT2A. Paper: https://doi.org/10.1073/pnas.0603119103 ... another one on the molecular basis for how it works: https://doi.org/10.1016/j.bmcl.2009.07.143

(Urocanic acid is a funny name. According to Wikipedia, Urocanic acid was first isolated in 1874 by the chemist Max Jaffé from the urine of a dog,[8][9] hence the name (Latin: urina = urine, and canis = dog). Cis- and trans-urocanic acid literally mean "this side dog-pee acid" and "that-side dog pee acid", respectively. Weird! I almost wish I could unlearn the fact as it's somewhat distracting, heh.)

And similarly, many substances which activate serotonin receptor 5-HT2A are immunosuppressors and antiinflammatory, substances which are more known for, uh, inflaming the ... er ... senses?: https://doi.org/10.3389/fimmu.2015.00358

A receptor by name Sigma-1 is mentioned the, *ahem*, 5-HT2A agonist paper. It's thought to be immunomodulatory. Have you seen the study that indicates that the SSRI fluvoxamine helps against severe cases of COVID-19? http://dx.doi.org/10.1001/jama.2020.22760

Turns out that fluvoxamine is apparently has the strongest effect on the Sigma-1 receptor among the known SSRIs. https://doi.org/10.3389/fphar.2021.652688

As far as I understand this: Apparently serotonin can both induce inflammation as well as reduce it, depending on what receptors it hits, i.e. in what tissue it is. And blood platelets store serotonin at high densities. I hadn't heard about any of this until recently. Most surprising to me was that the organ responsible for the brunt of breaking down excess serotonin for disposal are ... the lungs!

There are theories - which seem biologically plausible to me - that in COVID-19, there is inflammation and endothelial injury to the lungs, which causes platelets to release serotonin, the lungs' ability to clear serotonin is impaired, and that this forms a feedback loop of excess serotonin buildup and further inflammation. https://dx.doi.org/10.2139/ssrn.3800402 ... and that blocking serotonin receptors using 5-HT2A agonists helps recover severe cases of COVID-19. There is anecdotal evidence and biological plausibility. They say it's hard to get this studied properly, i.e. to get funding and attention.

Antibiotics are complex molecules. Some of them are even anti-depressants. Intended use does not equate to totality of effects.

I had my first allergic reaction to red meat in 2013. My diet currently consists of some form of chicken at every meal, or ground turkey.

It was 6 months of torturous experimentation to figure out why my stomach was burning like lava after every meal. When I had something important to do that day I knew I could eat bread or crackers to avoid a food reaction.

The allergy is rare in my home state so I had to see a doctor from South Carolina to recognize my symptoms and order the correct test.

Sorry your reactions are digestive :( I feel lucky to have skin hives only in response to this - worst being lips and tongue occasionally.

Ask your doctors to become educated on it, though I'm not sure it'll do much good to you it may help the next guy they see with AGS. Send them the nih.gov papers linked in these comments.

In school, I once had a patient with this syndrome who was admitted for his anaphylactic reaction - pretty wild. Tick borne diseases in general are fairly fascinating.

We joke about which antibiotic we would like to have if stuck on an island, and I always go with doxycycline.

Had this for a year and it's a huge pain in the neck. Mercifully, my levels dropped to zero after a year and I was declared clear, but I'm now ultra-paranoid about ticks when going outside. I nearly died from it while discovering I had it: had a cheeseburger for dinner and woke up in the middle of the night covered in hives and then collapsed in anaphylaxis. One emergency room trip later (apparently my BP dropped to 'how are you still breathing' levels briefly) I was back on my feet, but I spent the ensuing year scrutinizing food for mammal contributions. I found them in surprising places: that soup at the Chinese restaurant flavored with pork fat (glad I asked first!), the vitamins and medications in gelatin capsules, the chicken wings fried in beef fat.

The annoying thing about this is that it's extremely variable. The allergist I saw is one of the names on the early studies of this, and has been seeing patients throughout the southeast with it for the last twenty or so years. He's seen people that reacted violently if Wendy's didn't change the fryer oil, and other patients that barely reacted unless they had a steak. He even had one cattle farmer who would react to eating anyone's cattle except his own, to which he didn't react at all.

As someone allergic to penicillin, I've wondered if there is any residual trace in meat, and possible implications, given that animal feed contains antibiotics that include penicillin.

Tetracycline antibiotics are a known contaminant of calf serum. Beta-lactams such as penicillin are less stable, though, so they'd probably degrade when you cooked it.

Why don’t we make ticks extinct?

Well, while I am fine with trying to make some infectious diseases to become extinct, I would be careful here, see https://en.wikipedia.org/wiki/Four_Pests_campaign. In any case, apparently somebody else wondered about that too: https://www.reddit.com/r/askscience/comments/wkyax/if_we_cou...

However, it's conceivable that in the future we will figure out how to carry out large-scale vaccinations of tics, so we eradicate certain diseases from them before they are transmitted to humans.

Doesn't change anything to be honest. Any parasite should be eradicated regardless of whether it is infectious or not.

Much as I don't like ticks (and I really don't), I feel we should be extraordinarily careful before deliberately eliminating any species - they're almost certainly not the sole food source of anything, but even being a significant one might cause ripple effects. Plus, for all that they cause this and other problems when they bite us, it's not impossible that some of them trigger protective immune effects in some of the animals they bite, for example.

I think the solution needs to be some combination of getting much better at permanently modulating immune responses post-exposure and finding a method to avoid this extreme response.

Unfortunately, given the relative scarcity of these ticks and the newness of the condition, I would anticipate very little funding directly going toward finding a solution for it unless some ultrarich person takes it on as a cause du jour, or it comes "for free" with some other discoveries about immune modulation.

One could kill the ticks that spread human disease while leaving the vast majority that don’t.

I'm completely with you on this.

I believe treating the disease is better than eliminating species with cascading effects we don't entirely understand.

But it seems like killing ticks is much, much easier than completely curing a disease, so it's a short-term solution people approach instead. Not an ideal paradigm in my opinion.

Would love to live in a world where parasites live in the ecosystem, but we're utterly immune to them, as opposed to a world with no parasites.

That's a good question. Here in Latvia they actually make any walk in long grass somewhat problematic, as well as letting animals like dogs inside for whatever reason.

I actually got lyme disease a few years ago - had a period of pretty lethargic behaviour and noticeable joint pain. Blood work helped figure out its presence in my body and a course of antibiotics thankfully made me better.

Now, i'm not precisely sure about the long term symptoms, since me having occasional memory problems, insomnia and depression/anxiety all might be unrelated to it, but some people definitely get such symptoms and even worse ones: https://en.wikipedia.org/wiki/Lyme_disease#Late_disseminated...

After malaria and mosquitoes have been properly addressed, it would be nice to collectively work on ticks.

I think a better long-term solution that would have less cascading effects would be a cure for Lyme Diseases and the accompanying symptoms that follow years afterwards. Sorry you had to go through such a brutal disease. I've seen what it can do to people in the long-term and it can be devastating

But it would requi.re such advanced medicine that doesn't exist today. Although I'm all for tick pest control (up to a certain point).

Hey, if there are ways to vaccinate either the carriers of certain diseases, the people who'd get affected by them, or even cure those that have gotten ill, i think it's definitely worthwhile to research it further!

I guess that's how we ended up with vaccines for rabies being airdropped from planes, which sounds a bit silly, but is a really interesting approach to attempting to solve a similar problem for populations of wild animals: https://globalnews.ca/news/5782966/rabies-vaccine-bait-drop-...

Though i'm not entirely sure how viable doing something along those same lines would be for ticks. I do recall, however, reading about attempts to genetically alter mosquitoes to make them more resistant to malaria, so that its spread would be limited: https://www.nih.gov/news-events/nih-research-matters/enginee...

Maybe an approach like that could be viable for other types of diseases as well, without necessarily exterminating the populations of carriers, rather simply releasing modified specimens into the wild and letting them propagate the modifications through natural means.

Or use insect repellent when hiking? We already make enough species extinct unwillingly. I don't think it's a good idea to start extinguishing any species that bothers us. Where do you draw the line?

Insect repellent doesn't adequately repel ticks.

permethrin is a contact neurotoxin that will kill or repel most insects. I treat my hiking clothes with it if I’m going into tick country. I’ve actually watched ticks scurry away and die after they make contact with treated clothing. It kills mosquitoes equally effectively.

It’s really bad for fish though so I don’t use it all the time.

If you use repellents, the tick keeps climbing and gets behind your ears or in your hair.

Can someone explain the mechanism by which the allergy does not disappear after a period of time? Does the body essentially generate an immune response to the foreign molecule and then basically attack it whenever you encounter it again (e.g., by consuming red meat)?

> Does the body essentially generate an immune response to the foreign molecule and then basically attack it whenever you encounter it again (e.g., by consuming red meat)?

Any foremost protein (maybe some other substances too) in fact. So even proteins that come from the patient's own body could be targeted - cf. Autoimmune diseases.

But depending on the circumstances, some allergic reactions might recede on abstinence, e.g. when the system is overreacting. But usually allergies are immune-responses and don't disappear over night.

This is very real.

I live in a part of Sydney Australia, where this is s prevalent and ongoing concern.

I know a few people with the affliction.

Imagine having a deathly allergy to peanuts, but nobody understands, or cares, or doesn't believe it's real. You inform them and the food they serve you can kill you.

You can't go anywhere, you can't eat out, you can't even take a flight (not that we are now, but just imagine), because a steaming dish from your neighbour seat will send you into anaphylaxis (based on a real story!).

There is hope that it 'goes away' but the people I am close to, who have had this for at least 6 years now, it hasn't gone away.

We really don't know a lot about this.

Also, fuck ticks. Kill them all!

That sounds like a very extreme sensitivity to another food or maybe the timing was just coincidental and it was something they ate earlier. My and most people's alpha gal response is usually delayed by hours, supposedly due to food having to digest and break down food components into alpha-gal.

Another explanation is allergies and panic attacks also go hand in hand from what I've heard. Panic attacks cause breathing problems and can easily be confused with anaphylaxis or make real anaphylaxis even more terrifying than it already is. Feeling fear that a threat is ever present when you have any food allergy is real, but manageable.

> The bite transmits a sugar molecule called alpha-gal into the person's body

Is this similar to a prion disease, but a malicious sugar instead of protein?

No, this is an allergy.

A bit. It's more an allergy, like a peanut or shellfish.

Prions change the affected protein itself. This alpha-gal protein triggers a broken immune response where your body learns to identify regular animal protein as a foreign invader, so henceforth whenever you eat animal protein you get an immune reaction.

No. Prions are misfolded proteins - they replicate by inducing correctly folded proteins to misfold when they come in contact. As a result, misfolded proteins build up in the brain, continually inducing even more proteins to misfold, eventually building up to a critical mass and causing neurons to die.

By contrast, alpha-gal seems to trigger an immune response, which induces the immune system to create antibodies against it. It seems that something in red meat is similar enough to alpha-gal that it also triggers this new immune response, causing an allergy. But it doesn't cause a build up of alpha-gal in the body over time.

For my entire childhood my mom’s email name was alphagal. You know, because she’s a gal from Alpharetta. Or at least that’s what I thought.

I thought it was going to be something written about women like my wife (stereotypical redhead)

What I don't understand is if alpha-gal is present in red meat, why do we not develop the allergy from eating red meat? If the answer to that question is that the alpha-gal molecule can not pass from the digestive system into the bloodstream, then how is it possible to have an allergic reaction from eating red meat once sensitized?

There’s a complex interaction between the tick’s saliva and the human immune system that activates this allergy. My wife also has this condition and her reactions start in her stomach often resulting in vomiting and she feels fine after. Sometimes, the reaction results in a migraine headache. In her case, it’s not just beef, but any mammal.

It seems that all mammals contain alpha gal except Old World monkeys (which includes humans.) But cannibalism is frowned upon, so no mammal for her.

>There’s a complex interaction between the tick’s saliva and the human immune system that activates this allergy.

"It's complicated" isn't really an explanation. Do you have any links that explain the actual interaction? I've been googling and can't find anything.

Wikipedia[1] has footnotes for this quote: “If a tick feeds on another mammal, the alpha-gal remains in its alimentary tract. The tick then injects the alpha-gal into a person's skin, which causes the immune system to release a flood of IgE antibodies to fight the foreign carbohydrate. Researchers still do not know which specific component of tick saliva causes the reaction.”

1 - https://en.wikipedia.org/wiki/Alpha-gal_allergy?wprov=sfti1

Tick saliva is meant to trick your body into not identifying it as a foreign object sucking your blood. So saliva, alpha-gal, and who knows what else is injected during the tick's feeding and that mixture is different than just eating food that when breaks down in digestion is turned into alpha gal.

It originates in a different place of your body (not from your gut) and has different components.

That's about the simplest I can explain the difference.

I'm curious what the probability of contracting the allergy is from a single tick bite? Is it the sort of thing where the chances are low, but if you live in an area or engage in activities where you're getting a lot of bites, your risk is elevated? Or is it the sort of thing where any bite at all carries significant risk?

Mine was from one bite, it depends on the tick and maybe the person too. Some people get bit many times a year and don't get AGS or other tick borne illnesses. They're just lucky I guess

Turns out there are perks to being vegetarian and having cultural inhibitions about cow meat :)

Quick link: https://en.wikipedia.org/wiki/Galactose-alpha-1,3-galactose (alpha-gal)

Why doesn't red meat itself also trigger the allergy? What's different about the delivery from ticks that makes it allergenic as opposed to the delivery from food?

the article explains this.

Where?

I don't believe it does, at least not clearly. The question is why we develop an allergic reaction to the alpha-gal sugar injected by the tick bite, and not to alpha gal simply by eating red meat.

I believe the usual hypothesis for reactions like this is that the body treats the tick bite as an injury, and a possible source of infection. It will probably initiate the primary (innate) immune system, which inflames the site and recruits immune cells. These cells then find the slightly-unusual alpha gal molecule, and incorrectly treat it as an antigen, leading to an adaptive immune response to alpha gal from then on.

My understanding is that vaccines delivered by injection actually benefit from this system as well, as the body rapidly initiates the innate immune system in response to the puncture wound caused by the needle.

Was hoping the term alpha-gal syndrome referred to something I have observed where alpha females can be so competent and drama free that their organizations and projects become too boring for others who live on adrenaline and intrigue.

This and Lyme are my main(ly irrational) reasons for never hiking outside of, like, Hawaii. And I'm sure a more seasoned HNer can scare me away from that, too.

Any news on whether exposure treatments like those for peanut allergies have any effect on alpha-gal allergies too?

I feel like it is necessary to be scared of it an amount proportional to how bad it is times the expected chance you get it. And as bad as these are, they're just not likely, and even less likely if you're careful at all.

Agreed- the psychological and physical health benefits attributed by several studies to regular exposure to wooded and rural outdoor spaces is almost certainly worth the risk.

Worth the risk of being food impaired for life? Don't know about that.

There's a much greater chance you could die in a car accident, do you also avoid the highways?

Personally I'd rather die than give up one of the main joys in my life.

Technically, you always have the choice to convert the latter into the former.

No thanks.

Completely fair enough. But that seems to contradict your earlier statement that you'd prefer to die.

Don't let perfect be the enemy of good. You can never 100% insulate yourself from all harm. But you can choose to reduce it where you see fit.

You get used to diet modifications after a while, took me a year at least before I stopped 'mourning' my old diet so to speak. There's plenty of other delicious foods out there and it may go away eventually.

There's plenty of outdoor spaces that are treated for ticks prevention to enjoy too, to get the best of both worlds.

I disagree as someone who spent all my time outside up through age 18 or so.

You can come hike in Denmark. Over the last decade it has apparently become more efficient to keeps the dairy cows inside and harvest the grass for them. Feels completely wrong, and I never figured out what changes in rules or technology triggered this.

Then you just need a TBE-vaccine and a daily tick-check to make sure you don't get lyme -- and you are good to go exploring our great nation which includes e.g. the one and only "Sky Mountain" [0].

[0]: https://en.wikipedia.org/wiki/Himmelbjerget

Wow. Denmark reportedly has the lowest amount of corruption in the world if I am not mistaken. What a special country. Does your culture have a “directness” to it like the Dutch? What is your opinion on the immigration backlash of late?

You should also ask about gross vs net salary.

Both, in general, and specifically when talking about Scandinavian countries.

> Denmark reportedly has the lowest amount of corruption in the world if I am not mistaken

Lowest _percepted_ corruption, which is quite a bit different than what you suggest, maybe us danes are just completely oblivious ;)

Danes do have the same directness that you speak of.

you know you're in a flat country when "one of the highest natural points" is 147m!

Yea honestly I think a reasonable fear (at least I can relate). I have been van-life the past year and have seen my fair share of ticks.

Just general advice that has been effective for me (I’m sure you can probably find this online)

Before any hike, deet or other repellant on your skin and clothes/shoes. Know where they hang out and try not to go into deep grass. After a hike, shed all your clothes and shoes carefully and wash it all. Take a shower and either have someone check you out or do a self inspection.

Some places, like desert climates, I have never seen any. One of the worst hikes I’ve encountered I was in Idaho by a river and must have seen 100. I literally turned around and stopped the hike. I usually start by looking at the tips of grass blades hanging over the trail. As you walk you kinda just scan and after a while you might see them just hanging on the very end with their arms extended. If you don’t see any, there probably isn’t much to worry about.

Ive avoided a bite so far but I also obsess…

DEET on skin and permethrin on clothing and shoes is more effective. With the right kind of clothing and thorough permethrin treatment, any ticks that get on you will be dead before they find their way past the clothing to bite your skin. Just don't use it on skin, and keep it away from your cats. DEET can also do nasty things to clothing made from synthetic fibers, which are generally some of the best clothing choices for hiking.

This is what many hunters use. Permethrin adheres so well to clothing fibers that it lasts through several wash cycles.

Also avoid passing under low hanging branches. Ticks will hang out on a branch and wait for animals or humans to pass by underneath and then drop off onto them.

This is a common misconception. They don't drop onto you from trees.

https://thehikingauthority.com/do-ticks-fall-down-from-trees...

Ticks: The Drop Bears of the Arachnid family: https://www.australiangeographic.com.au/news/2021/04/drop-be...

I'm not sure about Alpha-gal Syndrome, but thankfully in Idaho you won't contract Lyme disease from tick bites.

I'm originally from Idaho but recently moved to Virginia. I've been far more cautious about ticks here than I ever felt the need to be in Idaho because you just don't get Lyme disease there.

When I go hiking here I treat my clothing with permethrin, wear long sleeved shirts and pants, and use 100% deet on any exposed skin. So far I haven't seen any ticks on my body.

I’ve never heard of ticks anywhere in western Oregon or Washington. I’m sure there are other places without ticks also.

Various species (specifically the brown dog tick) are all along the west coast from California to British Columbia.

In this study it mentioned the Lone Star tick specifically though ("In the United States, the condition most often begins when a Lone Star tick bites someone"), and apparently it's not present in either of those states or Canada as far as I or the internet appears to know.

I guess it comes down to your risk aversion - assuming it can come from any tick, there's no 'safe' place to hike in most of North America. Personally I've been outdoors a lot all of my 35 years and ticks haven't been an issue here on Vancouver Island, British Columbia. The Pacific Northwest is probably safe enough.

As someone else mentioned, being outside and exercising is well worth the risk pretty much anywhere. Just be cognizant of the risk, check yourself and hiking partners if you're in a high risk area, etc.

I’ve had a couple of ticks here in Washington. They’re more common in Eastern Washington.

I agree. I’m never leaving my mom’s basement. Too scary out there.

Just wait. Sooner or later you will learn why the basement is horror central.

Black mold comes to mind...

Radon gas.

This, Radon tests are cheap. Get one if you have a basement or exposed dirt crawl space under your main living/sleep spaces.

Spending time in the wilderness on the east coast is not worth it anymore.

> never hiking outside

I still do very long hikes each summer, but now I'm obsessed with ticks and constantly scan and dodge grass blades.

I refuse to apply nasty chemicals on myself though.

Given that figuratively all the causes of death in the Western World are directly caused (strokes) or heavily correlated (depression) with a sedentary life style, I am quite sure that regular hiking will massively improve life length and quality.

I sometimes wonder what the world would look like if people cared about the things that actually kill. Like, what if we would invest 300 trillion dollars into fighting prostate cancer instead of "terrorists"? What if we would design an entire education system around healthy sport instead of the prevention of "stranger danger"?

Wait, is pork "red" meat or not?

Kinda in this case yes? Mammal meat contains alpha gal technically, "red meat" is just used to explain this allergy a little less pedantically.

Based on my understanding that Covid-19 significantly impacts the blood and red meat is a primary source of important nutrients pertinent to blood health, I googled "alpha gal covid" and there are a few articles that turn up, such as:

The antibody response to the glycan α-Gal correlates with COVID-19 disease symptoms

https://onlinelibrary.wiley.com/doi/10.1002/jmv.26575

U.S. Pharmacy Chain Will Not Give COVID-19 Vaccine to Customers with Severe Allergies – But Others Will

She was surprised when pharmacy staff then declined to vaccinate her. Harman, 78, says the Ingles staff told her it was “company policy that they could not give me the vaccine because I carried an EpiPen.”

Harman was diagnosed eight years ago with alpha-gal allergy (sometimes called red meat allergy) after a tick bite.

https://www.allergicliving.com/2021/02/04/u-s-pharmacy-chain...

Immunity to glycan α-Gal and possibilities for the control of COVID-19

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7735019/

I don't fully understand what I am reading in these articles. I have no idea what alpha-gal really means.

I'm tossing it out there hoping someone more knowledgeable than me will weigh in.

In response to the pharmacy link: I suffer from alpha-gal allergy and researched mRNA vaccine ingredients prior to getting the Moderna vaccine. I was perfectly fine. There's also a /r/alphagal reddit thread discussing the vaccine they got and reactions where the majority of people said the same.

Classic flu style vaccines like J&J's covid vaccine can use either a pig or chicken egg base - the pig being potentially risky for alpha-gal allergy sufferers and egg theoretically fine. I personally have just avoided the flu vaccine though may try it this year after confirming I can get the egg based one.

The other links are interesting...alpha gal and covid-19 are both very new afflictions which don't have much history of study yet. So I take that info with a grain of salt, though lets hope it leads to some breakthrough for treatment of either COVID19 or AGS.

Thank you.

As an unpopular HN opinion, I love red meat, so this would be very inconvenient for me. Although, synthetic beef products are out there so I guess there's that option. Just wish they had more weightiness and texture.

I don't think that's unpopular.

That's not an unpopular opinion.

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