What is Alpha-gal Syndrome?

Dr. Bill Blackley Talks About This Dangerous Tick-borne Allergy

Bill Blackley is a family practice doctor, an avid hiker and volunteer organizer for Mountains-to-Sea Trail in North Carolina. In 2015, he contracted Alpha-gal syndrome, a little-known meat allergy that is spread by ticks. Alpha-gal causes many debilitating symptoms including an anaphylactic response that can be extremely dangerous. Dr. Blackley shares his experience and the ways he has found relief.

Additional Information

Question: If all red meat (beef, lamb, pork) has alpha gal in it, why don't people have an allergic reaction when they eat meat unless they are exposed to alpha gal through a tick bite? 

Answer: "A tick bite triggers your immune system to react to alpha-gal as a defense mechanism. The antibodies that your body makes to protect you from the tick bite remain in your system. These antibodies will then combat alpha-gal when you eat meat that contains it." (source: Healthline.com)

Here's more detail from alpha-gal expert Scott Commins, MD, who is mentioned in the interview:

"It’s a fascinating question overall for the field of allergy / immunology: why does one route of exposure induce tolerance (oral) while another leads to allergy (skin). It’s an active area of research for food allergy in general and obviously for [alpha-gal researchers]. 

Basically there are two factors: one is the route of exposure. Absorption through the gut leads to tolerance, which is why the overwhelming majority of people do not have an allergic response to foods. On the contrary, exposure through the skin is an established way to drive an allergic response. This leads to the second factor: tick saliva. Tick spit is highly  and by being “applied” through the skin, this causes the human immune system to make an allergic response to the alpha-gal present in some ticks.

What becomes impressive, to me anyway, is how powerful the tick saliva factors are that these can create an allergic response to alpha-gal when a tolerant response is already in place. More directly: most folks with AGS have safely eaten red meat for years and yet a tick bite can overcome that to drive a "new" allergic response."

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Transcript of the Interview

Mark at Insect Shield            

Hi, and welcome to the Insect Shield blog. We're here today with Bill Blackley, who is a member of the Mountains to Sea Trail in North Carolina, and he's on the board of that organization. And they've been working with Insect Shield for quite a few years. We have a relationship where we provide clothing for their volunteers, and we treat that clothing [with permethrin]. And so, Bill, welcome to the Insect Shield blog. We're really honored to have you here.

I'd like to talk about kind of your personal experience on the trail. And you're a doctor yourself. You are one of the volunteer organizers, as I understand it. And, you've also got Alpha-gal syndrome, which we're really interested to hear a little bit more about. I know you're aware of all the other tick-borne illnesses, but we haven't really talked to anyone here who's got Alpha-gal, and, you know, [that’s] something that people really need to be aware of.

Being a doctor, I'm sure you're a lot more aware of the implications of a tick bite. So when did you contract Alpha-gal? And let's talk a little bit about that, because that's a different kind of tick borne disease.

Dr. Blackley

I got it in 2015. So I've had it a while. And in the beginning, I had a hard time getting the diagnosis made. That's tricky, because you're not waiting nobody. And in medical school, I was a family physician and urgent care doctor. And so I knew a lot about medicine, but I didn't even know what I had. And I went to my partners, and they didn't know what I had. And then the health department. They didn't know what I had. And so I had like, I don't know, I've had 38 allergic reactions, little ones and big ones. And that's kind of the trick with Alpha-gal is you can have a real minor reaction or you have a big one.

Mark at Insect Shield            

What causes the reaction? So you're having these reactions? Did you know you got a tick bite to prompt it?

Dr. Blackley

I didn't know at the beginning; I didn't know what to look for. I'd had tick bites before, you know, I was a boy scout. I knew all about ticks growing up in North Carolina. But nobody was asking about if I'd had a tick bite when I would go to the emergency room with these allergic reactions: with urgent care, the primary care, even the allergist I went to didn't know much about it. So we actually, I mean, I'd had a bunch of reactions. My lips would swell up. They would bleed. You know, I'd have shortness of breath and abdominal pain and my head would swell up this big, and a knot in the roof of my mouth. And everybody would say, I don't know what it is.

So anyway, I thought it was just an allergy of some kind. Yeah. And so we were, my wife was listening to People's Pharmacy. And they had a little short about allergic reactions related to ticks. And so she said, Bill, I know it was something like that, but anyway, I found a little speck on my skin and I thought I had a skin tag. Because it was behind my back, I couldn't see what it was. I just thought it was a skin tag, so I asked my wife is this a skin tag, she said, "Oh my God, it’s a tick! That's what you've got." So my wife really diagnosed it.

So then I went to several people that thought they had some experience with that. And they said, “Well, we don't know what it is exactly. But you know, you could have an occult cancer or something.” Yeah. So finally, I went to see this Dr. Scott Cummings in Chapel Hill, who was one of the, he and Thomas Platts-Mills were the ones that discovered the relationship between ticks and this Alpha-gal, which is a red meat allergy, as you know, I'll talk about that in a second.

But I went to see him and he said, “Oh, gosh, Bill, you’re classic for having this disease.” And I looked back in 2002, there were, all I think there were were like 24 cases known. And now there's thousands.

Mark at Insect Shield

24 in the country? Oh, my goodness.

Dr. Blackley

So it's, it was not known or wasn't here, until they started. And of course, they would, nobody knew what they were looking for. And so the symptoms you might have, let me give you an example. The first symptoms I had were the profuse runny nose. And I mean, to the point of bleeding, and this big lump showed up in the roof of my mouth, my lips were puffy, and I bumped my head under the house, you know, working under the house, and it swelled up like this big. And I just thought, Gosh, what a terrible lump I have on my head from hitting my head on the rafter on the beams under the house you know. So, [Dr. Cummings] explained that this red meat allergy, what happened is a million years ago or so, the higher order mammals were differentiated from the lower order mammals. So humans and chimps did not get this chemical called Alpha-gal.

But the lower order animals like deer, rabbits, dogs, they kept this sugar, it's a sugar not a protein. That's the big difference between it and other allergies. It kept this sugar in their body and so that when a tick bites a deer, and this gets into its saliva, it gets this Alpha-gal. And then the tick is floating around like a regular tick on the grass, on the edges, and he bites a human. The human body recognizes that the Alpha-gal is almost human, but not quite. And it mounts a major anaphylaxis reaction to try to get rid of this thing because it thinks it's dangerous.

And so every, basically what happens, any blood vessel in your body can start leaking after this happens. So I was having brain fog, pulmonary edema, and all the swelling. And my worst problem was abdominal pain, because my intestines were swelling up too. So wherever you have the blood vessels, they just leak, and then everything swells up where that is and I was having colon swelling, and they didn't know what it was. They just didn't associate that with my nose running.

And I would go on a trail and I'd be working and I could normally pop up and down the trail. I couldn't even walk out of the work day I was just so short of breath, you know. So they finally made this diagnosis and the only treatment is avoidance of a mammalian meat and meat byproducts. And that's where it's tricky, because yeah, you can avoid hamburgers and beef and pork and all these good things you like to eat, but on a package of food, it'll say all the ingredients and it'll say milk, so right away that's out because that's a byproduct from meat. So cheese, milk, whey, and then gelatin. Any medicine in a capsule usually comes in gelatin, which is a meat product….

Mark at Insect Shield

Wow, that is incredible. I mean, it sounds almost as bad as Lyme disease.

Dr. Blackley

Well, I mean, how many people have had this and didn't know it and maybe even died from it, you know? Because and you know, there's an Alpha-gal website, you can get on now and, and talk about it. But you know, some people have had their colon removed because they have recurrent edema in their colon. All it was was an allergy. All they had to do is quit eating or drinking [mammalian meat products]. Now some people can get by with eating a little milk or cheese, these little variations, but the nice thing about it, there's a blood test. One test costs like $35. I guess the more people get it the price will go up. To find out, I had the test. It's very sensitive, but not very specific. So if your level is three times normal, or 10 times normal, you might have the similar reaction no matter what level we have. So they can't test you and see whether you're working your way out of it. The only way is to test you to see if you've worked your way out of it.

And of course, I don't know many people who have [done this, but it’s] to feed you a hamburger or something. And they will do that in the office, maybe sit there for four hours. And see if you have anaphylaxis.

Mark at Insect Shield

It better be a good hamburger for that price!

Dr. Blackley

Well see, I'm not willing to do that. Because I'm so miserable. I'm sick for a week. If I get it, you know, I went to a grocery store and they had some vegan cookies. On Christmas and I wanted one because I hadn't had any butter or you know, anything like that. So I've got a cookie and ate it and I had a bad reaction. And then I just went back to the store and said, "Good gracious because is there any chance...?"

They said, “Oh, we had given out all the vegan cookies. We just put these other ones over here." So I mean, they didn't realize the difference. I think they think people that are trying to avoid red meat are kind of hippies, you know or something. They don't realize that I have a medical reaction. It makes me really sick.

Now having said that, I've got a little card I carry and I take it to the restaurant and the chefs delight in helping you. They know no butter, no cheese, no whey. No yogurt, no Jell-O, all the things to try to avoid and I have a pretty good diet. You can eat fish and fowl and emu. So we buy emu by the box. And it tastes, it's like a red meat but it's not. You know, it's a bird.

Mark at Insect Shield

Where do you get that? Yeah, just wondering. Online?

Dr. Blackley

Yeah, well, actually right down near Greensboro there’s an emu farm now, and the guy that owns that one and one in Tennessee, he's got Alpha-gal too. So he's raising emu. So I get emu steaks and emu hamburger, and they're wonderful. You wouldn't know the difference. And you can take the big long neck of the emu. And you can make, you know, chop it up and make… it shreds out just like barbecue. So there's plenty to do and I'm not down in the dumps about it. My wife is converted to the same diet that I'm on. And we both feel healthier.

And the interesting thing is, is that a lot of people in the south have heart disease, right? Okay, so um, they think that's from eating red meat and that sort of thing. But one of the ways they do a screen on people is Look, look at calcifications in their arteries, right. And so people that have heart disease have a lot of calcifications, but guess what, people that have long term Alpha-gal have calcifications too, because their blood vessels leak, and then they get a little harder the arteries there. So people might be having, he might be having Alpha-gal, they don't know it. Since, like 2002, there weren't but 24 cases that I could determine were known. And now there's 6,000. My doctor has 2,500 patients or something like that.

Mark at Insect Shield

Because he's an expert. I mean, he has it himself. So he's kind of motivated.

Dr. Blackley

No. This guy. Scott Cummings doesn't have it but Platts-Mills does have it. That's his partner at University of Charlotte. Scott Cummings is at Chapel Hill now. But they work together, they worked together and I think they still continue to work together.

Mark at Insect Shield

So if you have Alpha-gal, there's no other option than eliminating all these foods from your diet?

Dr. Blackley

Well, yeah, I mean, you could take steroids every day and try to avoid it. Or you could take an allergy pill and that helps some. So if I accidentally get exposed, my doctor puts me on prednisone and Allegra, and that knocks it down, you know, but I've got an EpiPen, just in case. Yeah, I take that wherever, you know.

But here's the other interesting thing, like if you have a seafood allergy, or peanut allergy, right, you know, you eat it and you know, 10 minutes later, you have your reaction, right? That's a protein allergy. And what I've got is a sugar, a glucose type allergy. And I guess that's the proper way to say it. And, um, but it takes four to six, sometimes eight hours for the reaction to occur. So you eat it, and then you don't even notice any symptoms for four or five hours.

And then all of a sudden, you get the symptoms. And that's why people were so confused. And they think, Gosh, he must have gotten a sting of some kind. So now that people know that it's three to four hours, six hours later, you can, if I've got it. If I start having a reaction, I know I've eaten something back then. And then I can go right away and take the prednisone and the Allegra and since it’s a mild reaction, that's what I do and it treats it.

Mark at Insect Shield

And so there's a website for this. You mentioned.

Dr. Blackley

Yeah, Alpha-gal, and it’s a private website. So you have to sign up to get on it. The best thing to do is talk to an allergist. Who knows the problem, and some allergists honestly don't know much about it. I think it's getting more attention [but] since it's not an infectious disease, you know, the Center for Disease Control wasn't jumping on top of it, because it's not an infectious disease.

There's plenty of trouble from Lyme disease and Powassan and Babesiosis, and Spotted Fever and Colorado tick fever, there's a bunch of tick diseases. But usually, when you get a tick bite the tick doesn’t have a disease. I mean, most of the time, you would not get one of these things. You have to watch for symptoms. But the unfortunate thing about Alpha-gal is that once you got the tick bite, if it stays on you long enough, there's no treatment. Once you’ve got it, the main thing is if you see a tick on you, is to get that tick off there as soon as possible. Or the better thing is to get some Insect Shield clothing, permethrin and wear it if you're going to be out in the woods or the edge of the yard or something, just put it on, because you can buy by the clothing that basically when the tick gets on it, they want to get away from you as fast as possible. They jump off!

Mark at Insect Shield

It's not a comfortable place for the tick. And yeah, I mean, that's kind of a nice segue, because we have done, you know, as I think I mentioned, that for Mountains-to-Sea Trail. We treat clothing and that is given to their volunteers, which they've got a quite a dedicated core of volunteers. You mentioned the 1000s of hours that are put in through your organization, and I think they do something similar in terms of volunteers that contribute, you know, 1000s of hours throughout the year to maintain that trail. Well, in terms of Alpha-gal, is that something that only a specific tick carries, like, you know, in the case of Lyme disease, it's the deer tick.

Dr. Blackley

Yeah, there are two main ticks. The main tick is the Lone Star tick. It's got a little white dot.on the back; it's really easy to determine, and then the black legged tick can carry it as well, and you know the instructions to get rid of it are pretty universal you know, you want to find tweezers and get down below the below the head and get all the tick out but don't irritate the tick by putting anything on it. If it starts getting angry, it starts spitting back in you, then you've got it [spreading the pathogen].

Mark at Insect Shield

And of course we try not to push one method over another here but that that is correct. I think the fine tip tweezers are definitely the way to go and doing you know regular tick checks if you've been outside and wearing tick repellent clothing. It's just mainly that it's better to try to prevent up front than to deal with these diseases after the fact.

Dr. Blackley

Yeah, just honestly, and I've done it. I've got clothes that are, you know, the tic,k the Insect Shield kind of clothes that are permanently and those are good for about 70 washes, I understand. And then you can send them back and your company will actually treat them again. But you can also buy some stuff and treat it yourself. But then it only lasts, you know, five to seven washes. So I tell people, if you can afford it, just buy the right clothes and keep them in one drawer and wear those. Because, you know, I was putting my little marker up on the wall inside my blue shirt, my green socks, by brown pants. How many times have I worn these you know, inside your door on your closet door? That's almost impossible to keep up with.

Mark at Insect Shield

Exactly. So yeah, and we do also offer a service where if you've got particular clothing or you know, heavy duty socks or whatever for your hiking, you can send those in to us. And we will treat them with permethrin. And rather than use just spray, which as you say is not going to last as long, the treatment that we apply to any clothing - as long as it's not dry clean only or something like that. That lasts five times as long as spray that you apply yourself. So it's really worth it.

Dr. Blackley

The other thing is I spent a couple tours in Vietnam, in the army. So I'm interested in military clothing, of course, and all military clothing like that is impregnated with permethrin too. So that kind of tells you right away with the army, they don't want a whole bunch of people who can’t eat beef. And of course, there are other tick bite problems too, but there's a food one, and then there's the Lyme disease, which of course is awful, that's probably more a lot more common.

Mark at Insect Shield

Even Lyme, I mean, we're finding that these tick borne diseases are not getting as much attention, as you know, other diseases or cancer research. Funding is a big deal. So most of the Lyme disease organizations that we work with, like Project Lyme, or LivLyme, a lot of their focus is on securing more funding for research, you know, but again, it's much easier to just invest in some clothing that's going to keep the ticks away, than have to come up with ways to treat after the fact.

Yeah, well, that's really great. I think we've gone pretty far in depth into the Alpha-gal, which I really wanted to do, I think this is something that, as you said, doesn't get a lot of attention, doesn't get talked about that much. And people are just learning about it. There are other tick borne illnesses like Powassan virus, you mentioned, that are also very serious, and what else is going on in the area of understanding tick borne illness?

Dr. Blackley

About the infections, I can't add a whole lot. You know, basically, you can't tell if a tick is infected or not. If you get one on you, you need to get it off as soon as you can and get it off safely, and watch for side effects or symptoms. Now, the medical point of view for infections, you know, headache, fevers, chills, then there's an antibiotic for that. But for the Alpha-gal, and you've just got to go learn as much as you can about it. You have to call. You have to do a lot of calling to the companies that you want eat their food, because the companies are not alert to this disease yet.

So they'll put “natural flavoring” on the side of the container of food. It can be plant based or animal based. But it doesn't take like one teaspoon of vegetable beef soup, and I spit it out. And I've had a reaction to that. It's not much. And there's also carrageenan, which they put in non-milk in a non-dairy ice cream, bug carrageenan looks a lot chemically like Alpha-gal. So you still get a lot of the side effects like you've got an Alpha-gal attack when you eat carrageenan. I think it's banned in Europe now because of GI bleeding. So I try to avoid things like that.

Mark at Insect Shield

So the ticks that are carrying Alpha-gal you mentioned there are two? And those are our which? 

Dr. Blackley

The Lone Star tick, which is really easy to identify [because of the white spot on its back], and then the black legged tick.

Mark at Insect Shield

And just to put a little plug in for one of our partners, there's no monetary exchange involved here. But that is TickSpotters, through TickEncounter.org, which is run by the University of Rhode Island. And, if you are bitten, and you remove that tick, don't destroy the tick, don't do anything else with it, just take a photo of the top, and you can send that photo to TickSpotters, and they will identify it for you. So that's another kind of leg up on getting that diagnosis: which kinds of ticks, you know, might have given you a bite.

Dr. Blackley

Yeah. And, of course, I could, I guess I can, there's so many different diseases in ticks, different kinds of ticks. You can also - I have a cell phone - take a picture of it, and if I see a tick or get a tick on me or see another tick, I can take a picture of the tick [using the Google Lens app], and it'll tell me what kind of tick it is. There's an app for that.

Mark at Insect Shield

Oh, wow, there's an app for that.

Dr. Blackley

It came already loaded on my cell phone. 

Mark at Insect Shield

Oh, you're kidding. I didn't know about that. Well, we'll put a link and mention that in the notes below the video here. We certainly appreciate your time on this Bill, and your insight and your experience with ticks and Alpha-gal. And as a big volunteer organizer, you're doing a lot out there in North Carolina, which is the home of Insect Shield I might add.

Dr. Blackley

Yeah, and I'm not you know, I'm not really a tick expert. This is just personal experience, and what I've researched and learned about it. And my doctor who knows a lot about it, Scott Cummings knows a lot about it and can answer a whole lot of questions. And, you know, you have to, for instance, every vaccine that you take, you have to find out if it's got any meat products in it, because you don't want to take the wrong flu shot. You're sick, or any. And when you go to the hospital, I've had a major surgery since all this happened. And I had to bring my own food into the hospital. There was concern about it, and all the medicines had to be approved for no animal products, you know, like heparin, for instance. And so it's, it's much deeper than you think. But it's once you get on an easy plane, I mean, a comfortable plane, but then as something new comes up, you got to do all the research again. 

Mark at Insect Shield

Sure. Well, we'll put a bunch of links down below the video here so that people can refer to those and find more info about Alpha-gal and also Mountains-to-Sea Trail you know, if folks are out in the Greensboro area or where the trail is located to get involved in some volunteering. So Bill Blackley, thank you so much for joining us on the Insect Shield blog today.

Dr. Blackley

You’re welcome. I hope it helps somebody.