Tick Bites, Meat allergy

"growing" My understanding is that its been known for a long time in butchery circles as they are more likely than most to get cuts that share blood with cows. As to why rates are going up, maybe its just better detection? Maybe it has to do with more people spending more casual time in the woods than they did 20 years ago? Or maybe people don't tick-check as they should.
 
I have it, its called alpha-gal. It comes from a tick called the lonestar tick that has bitten a deer and then when it bites you your immune system reacts to it. Every time you eat red meat or "anything from the hoof" (pork is red meat) or products containing it like gelatin, binders in pills, shampoos, etc, etc, your body reacts with an allergic response= anaphylaxis.

The article, title in particular, is very misinformed and misleading. The particular sugar they mention is found in all red meat, and is what is transfered from the deer to the tick then to you causing your antibodies to attack it, as well as any future red meat intake or contact with products made from red meat. You have no idea that most of the things you use, not just food, have red meat products in them.

I love steak, hamburgers are probably my favorite food. I have to avoid all meat products and carry an epipen for quite a while. My levels are low and may eventually return to zero allowing me to eat red meat again. I broke out all over my body, rash and lumps, severe abdominal pains, constipation, severe breathing issues like suffocation, throat closing off, and more. It sucks! Its also caused gluten sensitivity which makes me itch and sick.

You say people are getting outdoors more, but there are far fewer people outdoors today than there were in years past. I have been big outdoors person my whole life, and I got my tick while mowing the yard. Its far more common than you realize although small in numbers to the entire population, but trust me, it can happen to you and a lot of doctors dont recognize the sign, I went to the ER multiple times.

This is a map of reported cases just in the US.
image

The CDC doesn't even want people reporting it or lyme in a lot of states because it affects tourism. My hospital refused to report it or take it seriously. Luckily one of the doctors that helped develop the test is an alergist (Tina Merrit, formerly Tina Hatley in the article) in my state and she has it.

Facebook has a page of people that have it. If you know someone read up. Read up on symptoms yourself because doctors don't know about it because its rare and dont take it seriously when they do find out you have it.

Its a serious condition, anaphylaxis can kill you in minutes or in the least cause you to be seriously ill. I know multiple people that have it and one man that died on his way to the hospital after two self administered epipens and more doses in the ambulance.
 
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This is the Lonestar Tick, not whatever tick they showed in the article.
280px-Lone-star-tick-stages-cdc.jpg

And you have to be bitten, not just brushed up against it.
 
Ironically I just got a Christmas card from a friend who lives in Minnesota who said he got bitten by a tick and is now allergic to red meat. John
 
There are a lot of reasons tick reported diseases don't get reported as much as they should, but the CDC wants to know what's going on. From a ground level perspective I don't think tourism is what the driver is. I think its more to do with the mandatory testing costs being such that local DNR and land management budgets would be taken up by just the testing. But there is an economic factor coming from somewhere, the maps show that. Illnesses don't respect county lines. As for a hospital "refusing" to report something, there can be a heap of reasons why, not all are sinister, not all illnesses and incidents are tracked, and very few that are reported from the ER in particular, really only contagious diseases.

I'd also be very cautious about any medical info on facebook. There are people willing to pay to promote themselves on facebook who have an agenda, and its not always easy to figure out when that is happening. Its particularly bad in the anti-vax areas, but I've seen bad info posted about celiac that seemed credible on first glance. Why they would do this baffles me, but if there is money to be made, someone will advertise.
Boxer, I'm not trying to downplay or discount your experience, its certainly something I don't want to happen to me, and I'm at a pretty high risk for it. I just want to help add to the conversation as a whole. I come at it from the perspective of working in a semi-rural/wilderness area as a day job, and have a lot of medical people in my close circle.

With ticks in particular there is heaps of bad info, some accidental and some on purpose (why, I have no idea, but I've found blatant lies formulated about Aussie ticks) and the fact that a lot of illnesses that have been around for a very long time are only now getting recognized, and will take more time to get cheap reliable tests for. It all adds up to something that can be pretty scary to people.

As to my comment about more people spending time in the woods, maybe its just a local thing, but i feel like more people are doing day-hikes and picnics, or walking dogs and the like, but I don't really know. Its all just a guess.
Alpha-gal has been showing up in Australia, and I'm not sure if its due entirely to lone-star ticks or not, given that we also have paralysis ticks, people tend to get a bit panicy about ticks in general, so tick ID is not usually high on people's list, its more about getting it off as fast as possible.

Better info is coming, its just a matter of time. In the meanwhile its important to be careful, no matter where you are.
 
I actually was diagnoised about 3 years ago with Lyme disease ... the Drs told me that the last year and a half before that ... all the issues I had such as muscle aches cramps feeling tired and weak at times they were caused by Lyme disease ...

they said I was lucky that I was an athelete and still fairly active ... but it took it's toll after their estimated year and a half with it undiagnoised ...

and I still feel it affect me from time to time but I am lucky now its more of a minor annoyance some days if at all ...

and I check for ticks I grew up doing so ... and I never found a tick attached nor did I ever exhibit any type of rash ...

but started using permethrin religiously to treat clothing ... and as most ticks work their way up your body ... how you dress making sure they have to crawl high not just up your leg makes it a much easier to find any ticks.
 
gadgetgeek said:
There are a lot of reasons tick reported diseases don't get reported as much as they should, but the CDC wants to know what's going on. From a ground level perspective I don't think tourism is what the driver is. I think its more to do with the mandatory testing costs being such that local DNR and land management budgets would be taken up by just the testing. But there is an economic factor coming from somewhere, the maps show that. Illnesses don't respect county lines. As for a hospital "refusing" to report something, there can be a heap of reasons why, not all are sinister, not all illnesses and incidents are tracked, and very few that are reported from the ER in particular, really only contagious diseases.

I'd also be very cautious about any medical info on facebook. There are people willing to pay to promote themselves on facebook who have an agenda, and its not always easy to figure out when that is happening. Its particularly bad in the anti-vax areas, but I've seen bad info posted about celiac that seemed credible on first glance. Why they would do this baffles me, but if there is money to be made, someone will advertise.
Boxer, I'm not trying to downplay or discount your experience, its certainly something I don't want to happen to me, and I'm at a pretty high risk for it. I just want to help add to the conversation as a whole. I come at it from the perspective of working in a semi-rural/wilderness area as a day job, and have a lot of medical people in my close circle.

With ticks in particular there is heaps of bad info, some accidental and some on purpose (why, I have no idea, but I've found blatant lies formulated about Aussie ticks) and the fact that a lot of illnesses that have been around for a very long time are only now getting recognized, and will take more time to get cheap reliable tests for. It all adds up to something that can be pretty scary to people.

As to my comment about more people spending time in the woods, maybe its just a local thing, but i feel like more people are doing day-hikes and picnics, or walking dogs and the like, but I don't really know. Its all just a guess.
Alpha-gal has been showing up in Australia, and I'm not sure if its due entirely to lone-star ticks or not, given that we also have paralysis ticks, people tend to get a bit panicy about ticks in general, so tick ID is not usually high on people's list, its more about getting it off as fast as possible.

Better info is coming, its just a matter of time. In the meanwhile its important to be careful, no matter where you are.
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I know multiple people that have lyme and a handful that have alpha gal personally. When reporting lyme the CDC did not want it reported in many cases, even my previous doctor told me "its over reported and lyme disease is only found around Connecticut" which is BS if you look at the map.

How would DNR/BLM budgets be taken up? The people are the ones tested and there is a place in AZ I think that you can send your tick, any tick, to be tested for any tickborne disease, and some other states have testing centers.

Doctors and hospitals are supposed to report Lyme, RMSF, Alpha-Gal, and similar diseases to the CDC. My Alergist was pretty pissed that two of my doctors and the hospital refused to report it. I was at internal medicine which did the initial test but REFUSED to report it. They said it was "no big deal, mostly because its pretty new overall and they don't understand it. They told me I could keep eating meat which is why I stopped going.

As for ticks respecting boundaries, the lonestar tick is the known transmitter. A lot of people outside of where that tick is found are getting it while on vacation, or someone or some animal transported the tick carrying the disese to their local.

You can easily see the correlation between the two maps below.
Lone-Star-Tick-Map.jpg

image


Nobody is putting all of their medical information on facebook except one illness. There are thousands of different groups, cancer, lupus, acne, heart disease, diabetes, etc. Without a way to network as a group lots of people would suffer, people can talk about what hurts, what helps, and doctors are even on there to answer questions at no charge, some of my doctors even.

I'm not just shooting info out my backside here, I have personal experience or personally know others experience and have talked to my doctors or done research which I relayed. I have Alpha-gal and had/have Rocky Mountain Spotted Fever.
 
Boxer .45 Boxer .45 I'm not here for an argument. I'm not saying that you are wrong, just trying to add what I know and have been told. The big picture is always larger than what one person can see, and I'm not trying to say I see the whole thing, just maybe that I see a couple parts that maybe you have not.

As for why DNR budgets could get used up. I was told, so keep in mind this is second hand, but it makes sense to me, if Lyme was declared endemic in an area, then ticks would have to be trapped and collected for testing. In places where there is a large area to cover, and not many officers, that is enforcement time and time that has to be taken from other projects. When I was told this, it was common knowledge that some departments in Sask, as well as some parts of the states couldn't put fuel in the vehicles by the end of the month because the funds were not available. Is any of this true? No idea, but it makes more sense to me than the CDC not wanting the info. Medical staff are not immune to this bad info, and so often people do dumb things because they think that in some way they are helping. So even if none of what I said actually was true, people believed it was, and acted as such.

As for facebook, yes there is good info, but there is also junk, and the junk rises to the top because people are willing to pay for it, and willing to game the algorithms. So that needs to be kept in mind. I'm not saying toss the baby and the bathwater. I think its a garbage resource because I've got slightly better ways to communicate with people that are not as heavily manipulated, and its not a good way to have a long conversation. But that's me, if it works for you, cool, go for it.
 
gadgetgeek said:
Boxer .45 Boxer .45 I'm not here for an argument. I'm not saying that you are wrong, just trying to add what I know and have been told. The big picture is always larger than what one person can see, and I'm not trying to say I see the whole thing, just maybe that I see a couple parts that maybe you have not.

As for why DNR budgets could get used up. I was told, so keep in mind this is second hand, but it makes sense to me, if Lyme was declared endemic in an area, then ticks would have to be trapped and collected for testing. In places where there is a large area to cover, and not many officers, that is enforcement time and time that has to be taken from other projects. When I was told this, it was common knowledge that some departments in Sask, as well as some parts of the states couldn't put fuel in the vehicles by the end of the month because the funds were not available. Is any of this true? No idea, but it makes more sense to me than the CDC not wanting the info. Medical staff are not immune to this bad info, and so often people do dumb things because they think that in some way they are helping. So even if none of what I said actually was true, people believed it was, and acted as such.

As for facebook, yes there is good info, but there is also junk, and the junk rises to the top because people are willing to pay for it, and willing to game the algorithms. So that needs to be kept in mind. I'm not saying toss the baby and the bathwater. I think its a garbage resource because I've got slightly better ways to communicate with people that are not as heavily manipulated, and its not a good way to have a long conversation. But that's me, if it works for you, cool, go for it.
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The groups on Facebook are restricted, you have to ask to join and say why. I would never say take advice from someone on the internet, but it allows sharing of information as a place to start your research, tells you what worked for someone else you may want to try, can tell you what foods have bad reactions and why (ingredients), doctors you may want to see, treatments that might work, and advice from actual doctors in that field. I hate Facebook, haven't had an account since the second year they were in business, but these groups help people and have saved lives. Diseases that affect fewer people don't get much mainstream coverage, so groups try to help each other by sharing information.
 
Boxer .45 said:
The groups on Facebook are restricted, you have to ask to join and say why. I would never say take advice from someone on the internet, but it allows sharing of information as a place to start your research, tells you what worked for someone else you may want to try, can tell you what foods have bad reactions and why (ingredients), doctors you may want to see, treatments that might work, and advice from actual doctors in that field. I hate Facebook, haven't had an account since the second year they were in business, but these groups help people and have saved lives. Diseases that affect fewer people don't get much mainstream coverage, so groups try to help each other by sharing information.
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Yes, this is true, but my point still holds. Private group or not, they still get manipulated.
 
Ticks are so bad in rural areas now. It's mostly to do with the rodent population causing the spread as well as a few other factors.

I hate when I see them, crepe the hell out of me. To hard to smash them. And there fairly fast. I've seen more in recent years, but growing up I can't say I've seen many. I was outside most of my youth.

Someone in the family has lime, it's no joke.

I wish society could do something more about it. Cause it's really shitty stuff these nasty things can do.
 
I have had the red meat allergy (Alpha-gal) for about 6 years now. It is a life changing thing if you like meat, especially red meat. I carried an epi pen for about a year. But once I understood what was causing the problem, the allergy events stopped completely. I love juicy burgers and steaks. It has been quite an adjustment for me. I did some experimenting with my body and the reaction....

I learned or surmised that in my particular case, the allergy reaction seems to be more severe when there is a lot of grease such as a juicy burger. I can make beef roasts in the oven and eat them as long as I don't gorge on the the stuff. I can eat pork, fish, chicken, turkey with no problems. Some are not so lucky. No beef hot dogs or bologna for me....

I was talking to the tech who came to my house from the cable company and he said quite a few of the field guys have the alpha gal allergy now. When I was diagnosed, it was rare. My allergist asked if he could get my blood tested as he suspected the problem but only read about it. I had my blood tested and I was positive to the alpha gal allergy. I think I was his very first case. As a result, I would like to update him on my observations as it might help other people.

My allergist is one of the most recognized allergists in my area. He is quite good. I haven't seen him in years now.

I quit deer hunting because of this and the high likelihood of being bit by a tick and overlooking it for a couple days. I reduced my woods foraging and trail walking. But I still do that with careful attention to any tick that might get on me. The thing I don't do anymore is lie in the woods or grass to take a picture of some plant outdoors as I used to. This was a common event for me spending many hours in the woods with my camera and equipment. I do not walk in tall grass any more or if I do, I do a tick check as best I can immediately after getting into a more clear area.

This allergy can kill you. You have to be VERY careful after being infected with the enzyme from ticks.

My suggestion to the outdoors types is to pay VERY close attention to ticks in the field that get on you. It can happen to you and there are other issues with ticks besides this and lyme. My brother had lyme which was identified quickly and treated with antibiotics successfully. It is not just Rocky Mt spotted fever like it used to be when I was a kid.
 
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Boxer .45 said:
....I love steak, hamburgers are probably my favorite food. I have to avoid all meat products and carry an epipen for quite a while. My levels are low and may eventually return to zero allowing me to eat red meat again. I broke out all over my body, rash and lumps, severe abdominal pains, constipation, severe breathing issues like suffocation, throat closing off, and more. It sucks! Its also caused gluten sensitivity which makes me itch and sick.
<snip>
This is a map of reported cases just in the US.
image
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Tennessee seems to be in the heart of the reported cases. That is where I'm at. I don't know if there is a procedure for doctors to report these things to the CDC. They are mostly concerned about infectious diseases.

I experienced the same reactions as you did and when I had hives inside my body (pretty much everywhere inside and out as best I could tell), I knew I had to do something. Severe intestinal cramps were probably the worst. I was never in any danger of dying or needing emergency care like you. Maybe I was lucky as I went to my doctor pretty much immediately and he referred me to a high caliber allergist. We figured it was probably some sort of food allergy that just developed as my eating habits had not changed. The allergist figured it out in two office visits. My allergist instructed me to take Cetirizine every day (forever). Sam's Club sells it in fairly large bottles. I did the Cetirizine thing for about a year and stopped as I simply don't like taking any kind of drug unless I have to (including aspirin). I have not had a reaction since.

At times I have noticed a little "itch" on my neck after eating at a fast food restaurant, but I dismissed it as it was too quick relative to the allergy. It's usually after eating some sausage sandwich there. I haven't eaten a burger in 6 years+.

So, what can you eat and what can't you eat in terms of meat? Have you experimented?
 
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22-rimfire said:
Tennessee seems to be in the heart of the reported cases. That is where I'm at. I don't know if there is a procedure for doctors to report these things to the CDC. They are mostly concerned about infectious diseases.

I experienced the same reactions as you did and when I had hives inside my body (pretty much everywhere inside and out as best I could tell), I knew I had to do something. Severe intestinal cramps were probably the worst. I was never in any danger of dying or needing emergency care like you. Maybe I was lucky as I went to my doctor pretty much immediately and he referred to a high caliber allergist. We figured it was probably some sort of food allergy that just developed as my eating habits had not changed. The allergist figured it out in two office visits. My allergist instructed me to take Cetirizine every day (forever). Sam's Club sells it in fairly large bottles.

So, what can you eat and what can't you eat in terms of meat? Have you experimented?
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If you have Aloha Gal you better completely eliminate all red meat and red meat oroducts! Ny levels sre pretty low, I'm a level one (out of 6). This time you might not have a reaction that can kill you but tomorrow it can.

Allergy medicine helps if you are having a reaction, but it doesn't eliminate the risk. You don't find out someone is allergic to peanuts and say "keep eating peanuts". Its still affecting your body, probably much more than you know.
With Alpha Gal your allergy can go away completely, it depends on how bad your numbers are. Like I said, I know someone that passes out every time he smells meat, another that died, and someone else that gets hives and dizzy.

If you keep eating it your numbers may not improve at all. My numbers decreased by 1/3 in 4 months. Hopefully in a year I can eat red meat again, when my numbers are at zero.

I eliminated all red meat, anything from the hoof, milk, and even all medicines (pharmacists can change meds or compound) and shampoos and more, everything. There is red meat products in so much stuff!
 
Oh, I definitely had it 6 years ago. I have no idea of my "number". But as I recall, the allergist told me I only had a slight reaction overall versus the full fledged thing. I will continue to do what I have been doing and will probably go to my allergist before the 1st of the year to get a current read on things. I'm interested enough to have it checked after 6 years. You seem to have your's checked frequently or you were just diagnosed. Even if I am a zero, I will still be nervous about eating really greasy red meat.

I guess we'll find out if I am "feeding the allergy".

I have had zero problems with milk or other readily identifiable red meat product.
 
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22-rimfire said:
Oh, I definitely had it 6 years ago. I have no idea of my "number". But as I recall, the allergist told me I only had a slight reaction overall versus the full fledged thing. I will continue to do what I have been doing and will probably go to my allergist before the 1st of the year to get a current read on things. I'm interested enough to have it checked after 6 years. You seem to have your's checked frequently or you were just diagnosed. Even if I am a zero, I will still be nervous about eating really greasy red meat.

I guess we'll find out if I am "feeding the allergy".

I have had zero problems with milk or other readily identifiable red meat product.
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Have you IGG and IGE checked. My alergist helped come up with the original test, she was mentioned in the article. She tests once a year for it.

If you had Alpha-gal its not an either or thing, all red meat has the sugar that makes your immune system react. My milk is greater than my red meat, but only by a few points. When/if your numbers are at zero you can eat meat again, unless you get bitten by another tick carrier.

I can't wait to eat it again, already have a list of things I want.

Its important to note that if you aren't eating red meat you need to have your B12 and some other numbers checked since you are missing those from red meat. A daily supplement won't cut it because its not enough to replace what you are missing and most people are low already.
 
22-rimfire 22-rimfire your doctor prescribed you "Cetirizine" which has the ingredient "magnesium sterate" in it which is made from red meat. Also has lactose.
 
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