Every time I try to subscribe now, Substack freezes up and I have to reboot my phone. When this first started, I could go to my mailbox and get back in through another post, but now only if I reboot. Anyone else? Know how to fix?
Thank you so so much!! Ticks scare me so bad, but the idea of researching and compiling practical, systematic, and accurate information on them was overwhelming to me.
Thank you so much for this important post! I contracted alpha gal from a tick bite in 2020. I had no idea what alpha gal was, but after 6 months of my throat being so swollen I could only swallow sips of water, I finally saw an ENT who was familiar with alpha gal and got a blood test that came back positive.
If I may, I'd like to expound a little on what you wrote in your excellent article. Alpha gal is more than a "red meat" allergy. Alpha gal is an allergy to the alpha galactose sugar found in all mammals except humans. That means that ANY mammal products can trigger an allergic reaction. Pork (not often thought of as red meat), lamb, dairy, gelatin, lanolin, vitamin E sourced from animals; anything that comes from mammals. I cannot take gel capsule medications, for example. They have to be gelatin free tablets. Even carageenan, a product derived from algae that is used in many store bought vegan products, contains alpha gal. I have to be extremely vigilant about what... and where... I eat. For example I cannot go to a restaurant and order eggs (poultry product so safe for alpha gal), because they will be cooked on the same grill as the bacon, hamburgers, and whatever else the restaurant cooks. Cross contamination is a real danger. Severity of the syndrome exists on a sliding scale; some people have little to no symptoms, and some people have it so severely that smoke from a neighbor's barbecue grill can send them into anaphylaxis. The blood test tells you what range you fall into. Mine is moderate range. I don't go into anaphylaxis from smoke, and if I accidentally ingest dairy I will get a bad stomachache, but so far nothing as severe as anaphylaxis has happened. But I do carry an epi pen, as should anyone with allergies.
Thanks again for this important post! Ticks are no joke.
Have you ever looked into the question of how some people get more ticks than others? I really never get a tick (I'm in Central MA and am out in the garden all the time). A couple of my grandchildren might be outside near me and pick up several and I won't get one. My husband doesn't get any either.
Maybe there's something about us that repels them? And maybe there's a way to prevent being attractive to ticks?
Hi Janisse, can you expand on how you started feeling your symptoms? You mentioned a tick bite and rash 5 years earlier before you started feeling symptoms? Or were you feeling the symptoms all 5 years after the rash appeared before you sought help?
An excellent post. Very informative and accessible. I hope it ripples far and wide. I've had most of the diseases, fortunately not Powassan, although it's very much in my neck of the woods. Alpha gal was a tough one to crack with the four hour time delay of symptoms. A tricky bugger. Looking on the bright side, my diet is healthier these days. But like you, I will remain in the woods. Wiser in the woods, but always in them. Thank you for taking the time to put your post out there. I thank you for everyone.
Brian, you make me feel fortunate to only have Lyme! LOL. I can't believe you've had so many of the illnesses. About alpha gal, I have a question. Are you still not eating red meat? Or have you found a way to heal completely from it?
Alpha Gal Syndrome was my entry into the world of tick-borne diseases. I contracted it over ten years ago when there was little to no knowledge or research on it here in the U.S. I came by it by way of the Lonestar Tick. The information I found to help me put the pieces together came from research that was being done in Norway. Alpha Gal Syndrome gets its syndrome status from its unique four hour time delay. The year I was bit by the Lonestar Tick was a particularly bad year for the Deer Tick here in central Pa. So it took me several episodes of Anaphylactic Shock to realize that the allergic reaction wasn't caused by the tick I just pulled off me but the cheeseburger I ate four hours earlier. It was all pretty confusing there for awhile. So to answer your question, yes, I still need to watch what I ingest. My diet, however, is much better these days than pre-Alpha Gal. I can still eat turkey, chicken, and fish. It's not exclusively red meat that triggers the allergy though. I have been knocked down hard by expensive cheeses (very little processing) and yogurt with added probiotics. If you research probiotics and allergies you'll find that many types of allergies are triggered by probiotics. We have a 120 acre organic farm that's about 50% in woodland so I have a great source of healthy food and some exceptionally beautiful woods to roam. Life is good! Thanks for the inquiry and I hope you folks are well. If you have more questions please feel free to ask. I encourage you to keep well updated on the Powassan Virus. It's extremely dangerous and is crossing over to the deer tick population. Currently the mortality rate for reported cases is about 12%. It usually has no symptoms after a bite and infects almost immediately. Most all of the deaths were from complications of encephalitis which is a nasty way to check out. Be careful and keep tabs on its movement into new areas. Most of the tracking is being done by Parks and Recreation per state. They have found an alarming percentage of Powassan in state parks .
Good information --so many doctors still do not "believe" in Lyme disease and it can be hard to find testing in many areas--here for instance PNW where some people do not even acknowledge the presence of ticks.
Oh Janisse. . . thank goodness for your perseverance and for Buhner. This is such an informative post. Ticks are rampant in our area, even in suburban, manicured landscapes. I have had a few upon returning from some nature preserves, as well as our dog. You have convinced me to be more diligent in precautionary measures (clothing, repellant, sticking to the path). Thank you!
Vicki, PLEASE be diligent. Of course we love our dogs, but they do bring ticks to us. I've had people swear by the vaccine for dogs, and others say it doesn't work. I don't know. But please please please use the heavy-hitting insect repellents.
May I suggest buying a pack of the old fashioned lint rollers, the kind with a roll of tape attached to a hand held wand, each piece of tape has a perforated line to rip off the used piece. Keep one in the car, hiking, etc. For example, if you see a tick on yourself or your pet, that has not embedded yet, simply use the roll to lift of the tick, then fold the tape over it, nice and secure. If you are removing an embedded tick, do the same. It is always reassuring that you have a place to securely dispose of it, or keep it if it needs to be identified.
You’re welcome, I’ve been using them for years. Ooh, forgot to mention one more way to use them, very helpful to roll yourself, with clothes on, after spending time in infested places, woods, tall grass, trimming shrubs, etc. Keep one by the door. I also give my hat a good spray. I also use these products ;
I purchase the extra strength tick repellent, and the tick repellent for dogs. For sensitive areas, I spray it on my hands, then rub it on ‘the landing pad’ (top of his head) .Products spell good too
Thank you so much for this in-depth info on Lyme Disease! First, I hope you continue to recover, or the disease takes a back seat in your life. Secondly, I am going to dive into the resources you've listed, as I've long suspected I may have been infected. So far, doctors have been dismissive and cursory blood tests negative. You have given me new impetus to pursue this.
Oh, Jenny, I am so sorry. One piece of advice I have for you is to go straight to the Buhner protocol. The herbs won't hurt you if you take them and don't have Lyme, and they could possibly make all the difference if you do have Lyme. And have you seen the film--that really helped me. I'd love for you to keep me in the loop about your health.
Thank you, Janisse❤️. I will look into the Buhner protocol and revisit your post about Lyme disease to refresh my memory. I will let you know how it plays out.
When I had Rocky Mountaian Spotted Feever, my primary care ordered a lab test and sent me to a dermatologist. Fortunately, the appointment with the specialist was delayed and I convinced the primary care doctor to do the test. Then I saw the dermatologist who told me I did not have Rocky Mountain Spotted Fever. Then the test came back and I started antibiotics. I seem to be OK today.
Thank goodness for that. I'm so glad you are taking charge of your own health. Doctors are wonderful, but they have to know a lot, and you know more about you than any doctor will ever know. Stay well, Ray.
Janisse, here is a quick story about why your post would be a full circle moment for me. In 2017, my first child, who was born with Rubenstein-Taybi Syndrome - his genetics literally changed by the environment, stopped digesting food entirely after many rounds of antibiotics for a mystery infection. Facing a g-tube at 18 months, I started making stock from local pastured bones, and kraut, and syringing it into his mouth — one to seal the lining, one to repopulate. And, we reversed it. 8 years later - he is still eating whole foods by mouth.
During this really difficult time, your book, The Seed Underground, appeared in my life. I think my sister in law found it in a free library, didn’t have the time to read it, and handed it over to me. I already had a garden - but what happened next, and over the last 8 years, was nothing short of fate. Now, I am working with the elder matriarchs of the Sand Mountain Seed Bank to tell the stories of the 1200 North Alabama heirloom seeds they have saved over their lifetimes, while I continue to help them grow the seeds out.
And, my son - after many more rounds of antibiotics for recurrent strep over the past 2-3 years, is needing to go through another deep round of healing and rewilding in his gut.
A rewilding post from you would be a huge inspiration for me! Thank you - for everything. I wouldn’t be here, in my work, without you!
(Also, I received a Cauthen Fellowship with the Alabama Folklife Association this past year to do oral histories about, and save seeds for, ‘The Old Time Tennessee Muskmelon’. One of my soul plants. I started re-reading The Seed Underground a few weeks ago and was delighted to remember that I first fell in love with it in your book. You have inspired my work in so many ways!)
Red Meat Allergy is also tickborne and spreading rapidly. I have it now after being bitten by Lonestar ticks last summer. I ended up in ER and now have to watch for anything that has red meat products in it. Good times!
Some people are more allergic than others and carry an epi pin. I have a prescription for one but they are 257$ even with Medicare! And some people over time become less allergic but more bites of course can occur and then start all over!
This information is SO important as temperatures start to warm up and folks spend more time outside! One of my closest friends experienced a similar search for diagnosis until finally someone suggested she look into Rocky Mountain spotted fever, and lo and behold, she finally found an answer. These diseases/infections fly so under the radar in many places and much of the medical community is not yet educated deeply enough to consider them as diagnoses. I hope more interest in the topic spawns more research and thus more awareness for all doctors, not just specialists.
Every time I try to subscribe now, Substack freezes up and I have to reboot my phone. When this first started, I could go to my mailbox and get back in through another post, but now only if I reboot. Anyone else? Know how to fix?
Thank you so so much!! Ticks scare me so bad, but the idea of researching and compiling practical, systematic, and accurate information on them was overwhelming to me.
I’ve been through this too. I acquired Lyme as a child but was never properly treated until I was 32/33. It’s been a slog.
Thank you so much for this important post! I contracted alpha gal from a tick bite in 2020. I had no idea what alpha gal was, but after 6 months of my throat being so swollen I could only swallow sips of water, I finally saw an ENT who was familiar with alpha gal and got a blood test that came back positive.
If I may, I'd like to expound a little on what you wrote in your excellent article. Alpha gal is more than a "red meat" allergy. Alpha gal is an allergy to the alpha galactose sugar found in all mammals except humans. That means that ANY mammal products can trigger an allergic reaction. Pork (not often thought of as red meat), lamb, dairy, gelatin, lanolin, vitamin E sourced from animals; anything that comes from mammals. I cannot take gel capsule medications, for example. They have to be gelatin free tablets. Even carageenan, a product derived from algae that is used in many store bought vegan products, contains alpha gal. I have to be extremely vigilant about what... and where... I eat. For example I cannot go to a restaurant and order eggs (poultry product so safe for alpha gal), because they will be cooked on the same grill as the bacon, hamburgers, and whatever else the restaurant cooks. Cross contamination is a real danger. Severity of the syndrome exists on a sliding scale; some people have little to no symptoms, and some people have it so severely that smoke from a neighbor's barbecue grill can send them into anaphylaxis. The blood test tells you what range you fall into. Mine is moderate range. I don't go into anaphylaxis from smoke, and if I accidentally ingest dairy I will get a bad stomachache, but so far nothing as severe as anaphylaxis has happened. But I do carry an epi pen, as should anyone with allergies.
Thanks again for this important post! Ticks are no joke.
Have you ever looked into the question of how some people get more ticks than others? I really never get a tick (I'm in Central MA and am out in the garden all the time). A couple of my grandchildren might be outside near me and pick up several and I won't get one. My husband doesn't get any either.
Maybe there's something about us that repels them? And maybe there's a way to prevent being attractive to ticks?
Hi Janisse, can you expand on how you started feeling your symptoms? You mentioned a tick bite and rash 5 years earlier before you started feeling symptoms? Or were you feeling the symptoms all 5 years after the rash appeared before you sought help?
An excellent post. Very informative and accessible. I hope it ripples far and wide. I've had most of the diseases, fortunately not Powassan, although it's very much in my neck of the woods. Alpha gal was a tough one to crack with the four hour time delay of symptoms. A tricky bugger. Looking on the bright side, my diet is healthier these days. But like you, I will remain in the woods. Wiser in the woods, but always in them. Thank you for taking the time to put your post out there. I thank you for everyone.
Brian, you make me feel fortunate to only have Lyme! LOL. I can't believe you've had so many of the illnesses. About alpha gal, I have a question. Are you still not eating red meat? Or have you found a way to heal completely from it?
Hi, Janisse,
Alpha Gal Syndrome was my entry into the world of tick-borne diseases. I contracted it over ten years ago when there was little to no knowledge or research on it here in the U.S. I came by it by way of the Lonestar Tick. The information I found to help me put the pieces together came from research that was being done in Norway. Alpha Gal Syndrome gets its syndrome status from its unique four hour time delay. The year I was bit by the Lonestar Tick was a particularly bad year for the Deer Tick here in central Pa. So it took me several episodes of Anaphylactic Shock to realize that the allergic reaction wasn't caused by the tick I just pulled off me but the cheeseburger I ate four hours earlier. It was all pretty confusing there for awhile. So to answer your question, yes, I still need to watch what I ingest. My diet, however, is much better these days than pre-Alpha Gal. I can still eat turkey, chicken, and fish. It's not exclusively red meat that triggers the allergy though. I have been knocked down hard by expensive cheeses (very little processing) and yogurt with added probiotics. If you research probiotics and allergies you'll find that many types of allergies are triggered by probiotics. We have a 120 acre organic farm that's about 50% in woodland so I have a great source of healthy food and some exceptionally beautiful woods to roam. Life is good! Thanks for the inquiry and I hope you folks are well. If you have more questions please feel free to ask. I encourage you to keep well updated on the Powassan Virus. It's extremely dangerous and is crossing over to the deer tick population. Currently the mortality rate for reported cases is about 12%. It usually has no symptoms after a bite and infects almost immediately. Most all of the deaths were from complications of encephalitis which is a nasty way to check out. Be careful and keep tabs on its movement into new areas. Most of the tracking is being done by Parks and Recreation per state. They have found an alarming percentage of Powassan in state parks .
Good information --so many doctors still do not "believe" in Lyme disease and it can be hard to find testing in many areas--here for instance PNW where some people do not even acknowledge the presence of ticks.
Yikes.
Oh Janisse. . . thank goodness for your perseverance and for Buhner. This is such an informative post. Ticks are rampant in our area, even in suburban, manicured landscapes. I have had a few upon returning from some nature preserves, as well as our dog. You have convinced me to be more diligent in precautionary measures (clothing, repellant, sticking to the path). Thank you!
Vicki, PLEASE be diligent. Of course we love our dogs, but they do bring ticks to us. I've had people swear by the vaccine for dogs, and others say it doesn't work. I don't know. But please please please use the heavy-hitting insect repellents.
May I suggest buying a pack of the old fashioned lint rollers, the kind with a roll of tape attached to a hand held wand, each piece of tape has a perforated line to rip off the used piece. Keep one in the car, hiking, etc. For example, if you see a tick on yourself or your pet, that has not embedded yet, simply use the roll to lift of the tick, then fold the tape over it, nice and secure. If you are removing an embedded tick, do the same. It is always reassuring that you have a place to securely dispose of it, or keep it if it needs to be identified.
You’re welcome, I’ve been using them for years. Ooh, forgot to mention one more way to use them, very helpful to roll yourself, with clothes on, after spending time in infested places, woods, tall grass, trimming shrubs, etc. Keep one by the door. I also give my hat a good spray. I also use these products ;
https://nantucketspider.com/
I purchase the extra strength tick repellent, and the tick repellent for dogs. For sensitive areas, I spray it on my hands, then rub it on ‘the landing pad’ (top of his head) .Products spell good too
This is a terrific suggestion. I'm going back into the post right now & adding this to the list there. Thank you, Lor!
I am horrified by the primary-care doctor's reaction.
Patients know their symptoms. Doctors should listen.
100 percent.
Thank you so much for this in-depth info on Lyme Disease! First, I hope you continue to recover, or the disease takes a back seat in your life. Secondly, I am going to dive into the resources you've listed, as I've long suspected I may have been infected. So far, doctors have been dismissive and cursory blood tests negative. You have given me new impetus to pursue this.
Oh, Jenny, I am so sorry. One piece of advice I have for you is to go straight to the Buhner protocol. The herbs won't hurt you if you take them and don't have Lyme, and they could possibly make all the difference if you do have Lyme. And have you seen the film--that really helped me. I'd love for you to keep me in the loop about your health.
Thank you, Janisse❤️. I will look into the Buhner protocol and revisit your post about Lyme disease to refresh my memory. I will let you know how it plays out.
When I had Rocky Mountaian Spotted Feever, my primary care ordered a lab test and sent me to a dermatologist. Fortunately, the appointment with the specialist was delayed and I convinced the primary care doctor to do the test. Then I saw the dermatologist who told me I did not have Rocky Mountain Spotted Fever. Then the test came back and I started antibiotics. I seem to be OK today.
Thank goodness for that. I'm so glad you are taking charge of your own health. Doctors are wonderful, but they have to know a lot, and you know more about you than any doctor will ever know. Stay well, Ray.
Thank you so much for this open and vulnerable Post! I would love to hear your experience rewilding your inner landscapes post-antibiotic use! ❤️
What a great suggestion, Lauren. I'd LOVE to write this. I am crazy passionate about this. A post is forthcoming, dedicated to you.
Janisse, here is a quick story about why your post would be a full circle moment for me. In 2017, my first child, who was born with Rubenstein-Taybi Syndrome - his genetics literally changed by the environment, stopped digesting food entirely after many rounds of antibiotics for a mystery infection. Facing a g-tube at 18 months, I started making stock from local pastured bones, and kraut, and syringing it into his mouth — one to seal the lining, one to repopulate. And, we reversed it. 8 years later - he is still eating whole foods by mouth.
During this really difficult time, your book, The Seed Underground, appeared in my life. I think my sister in law found it in a free library, didn’t have the time to read it, and handed it over to me. I already had a garden - but what happened next, and over the last 8 years, was nothing short of fate. Now, I am working with the elder matriarchs of the Sand Mountain Seed Bank to tell the stories of the 1200 North Alabama heirloom seeds they have saved over their lifetimes, while I continue to help them grow the seeds out.
And, my son - after many more rounds of antibiotics for recurrent strep over the past 2-3 years, is needing to go through another deep round of healing and rewilding in his gut.
A rewilding post from you would be a huge inspiration for me! Thank you - for everything. I wouldn’t be here, in my work, without you!
(Also, I received a Cauthen Fellowship with the Alabama Folklife Association this past year to do oral histories about, and save seeds for, ‘The Old Time Tennessee Muskmelon’. One of my soul plants. I started re-reading The Seed Underground a few weeks ago and was delighted to remember that I first fell in love with it in your book. You have inspired my work in so many ways!)
Red Meat Allergy is also tickborne and spreading rapidly. I have it now after being bitten by Lonestar ticks last summer. I ended up in ER and now have to watch for anything that has red meat products in it. Good times!
Brent, I am so sorry to hear this. I'm sorry you ended up in ER. Yikes. Does that disease have any other symptoms besides allergy to red meat?
Some people are more allergic than others and carry an epi pin. I have a prescription for one but they are 257$ even with Medicare! And some people over time become less allergic but more bites of course can occur and then start all over!
This information is SO important as temperatures start to warm up and folks spend more time outside! One of my closest friends experienced a similar search for diagnosis until finally someone suggested she look into Rocky Mountain spotted fever, and lo and behold, she finally found an answer. These diseases/infections fly so under the radar in many places and much of the medical community is not yet educated deeply enough to consider them as diagnoses. I hope more interest in the topic spawns more research and thus more awareness for all doctors, not just specialists.
It's an epidemic, I'm afraid. Dallas, thank you for the story about your friend. I hope you're doing great.