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Alpha-Gal Syndrome

mayoclinic.org

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Re: Alpha-Gal Syndrome

#101

Post by omarhaneef »

Diederich wrote: post #16

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. P…

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?

Re: Alpha-Gal Syndrome

#102

Post by jschwartzi »

20after4 wrote: post #67
nsbk wrote: post #53

Earlier quoted context omitted.

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.

Re: Alpha-Gal Syndrome

#103

Post by MadAhab »

switz wrote: post #17

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…

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.

Re: Alpha-Gal Syndrome

#104

Post by omarhaneef »

setgree wrote: post #77

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…

I immediately had the same spy thriller novel idea!

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

Re: Alpha-Gal Syndrome

#105

Post by jschwartzi »

irrational wrote: post #14
eganist wrote: post #2

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

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

Re: Alpha-Gal Syndrome

#106

Post by devenson »

LinuxBender wrote: post #81
r0m4n0 wrote: post #13

Earlier quoted context omitted.

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 carefull…

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...

Re: Alpha-Gal Syndrome

#107

Post by jagged-chisel »

DebtDeflation wrote: post #90
jagged-chisel wrote: post #85

Earlier quoted context omitted.

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 i…

>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

Re: Alpha-Gal Syndrome

#108

Post by donatj »

> 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?

Re: Alpha-Gal Syndrome

#110

Post by flightless »

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.

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