Living with AERD: Misdiagnosis, Missteps, and the Fight for Effective Treatment – Rhonda Nelson on the Healers Café

the ER. I would go into hotel rooms because we traveled a lot, and if you know that there was mold in the air systems, that would set it off. So now we’re back to well, what is this? And it just so happened that we moved to North Carolina, and I found an allergist there, and he immediately said to me, as I was describing this whole journey, he said, you don’t have allergies. You have santers triad or AERD. And he said, I’ve just spent a week at a conference about this very disease, and we’re learning more and more about it. So sure enough, that is exactly what I had. But that took a little over two years to get a diagnosis, and it was a struggle. It was a struggle, because you would have, I would have an asthmatic attack. And I mean, you talk about severe, I was in the emergency room many times because you’re not prepared with the tools you need to deal with that, right? Because you don’t have a diagnosis. And I’d never had asthma as a child, this literally came out of nowhere.

Manon Bolliger  05:40

And so, I mean, it’s not extremely known, still at this point.

Rhonda Nelson  05:45

No, it’s not you know. And if you look at the components, it’s not like the components are anything that are just over the top, bizarre or different or whatever. We have an asthma component. We have a Nasal Polyp component, and then we do have, which is the most complex of the three components is the aspirin sensitivity and NSAID sensitivity. So overall, you would think that if a patient presents with two out of three, that possibly they would have the third, and that, you know, they would do an aspirin challenge to see but it is still very often misdiagnosed, which is disheartening to me, because if you don’t have the tools necessary to treat it, life can be pretty miserable. And I have to say there’s AERD patients that also have common allergies. So now they’ve got the two things fighting together, where and their ENT or their allergies may be treating their allergies, whether it’s dust mites or ragweed or whatever those common allergies are, but they’re not treating the AERD. So they’re not they’re still not getting any relief. And you’ve got these two things fighting. So it can be very challenging.

Manon Bolliger  05:46

Which is, it’s kind of shocking, because it’s not that rare, right, from what I understand, you know. Yeah. And, like you say, if you’re not prepared, it’s always a risk, yeah? Life, right? Because, you may not make it to the hospital on time, you know? So yeah. And it’s not common that they give you aids that you can use for yourself, even as much without a prescription, and then you need a diagnosis correct. It’s a bit of complicated vicious circle. Yeah. So what have you done for yourself to well, to improve from the situation, first of all, and is it a reversible situation?

Rhonda Nelson  08:07

So let me answer that question first. No, it’s not. There is no cure. And so, you know, I’ve gone down a really long path. The first band aid that they like to throw at it is steroids. And, you know, prednisone, and we know what that can do. And that was my path. I was on a lot of steroids for a very long time. Then now, you know, there are other medications that you can take to be well maintained. And I’ve been down that path as well. And as much as I don’t want to be someone that’s on a lot of medications, unfortunately, I have not found anything naturally that will keep it as well maintained as being on some of the medications. Now the good news for me, you know, biologics have come along, and I do take a biologic, and it’s allowed me to discontinue quite a few of the other meds. And as we know, a lot of meds have side effects that are not pleasant. And the original meds that I were on was that way, they’re very hard on the liver. You have to constantly monitor your liver enzymes. Then fast forward to the biologics, those have their own side effects. So I took it upon myself to go down another path to see what would help me in conjunction with the biologic and with the possibility of, if I never could completely discontinue the bio, the biologic, I would at least be able to stretch the treatments out. And so I went down a path of some more natural supplements and modalities that have really worked for me. Now I don’t say they will always work for everybody. I don’t proclaim that they’re a cure, because there is not a cure. These are all things that I do to make my day to day life more comfortable, for the disease to be well maintained, and again, to stretch some of my treatments out so that I’m not taking as much medicine as I once was.

Manon Bolliger  10:58

So What has helped you, even though you’re not prescribing, obviously, right?

Rhonda Nelson  11:04

Well, one of, one of the things that is is very well known, and a lot of patients talk about this. A lot of the resources that are out there for AERD, a diet that’s high omega three, low in omega six, because that can help reduce inflammation within the body.

Manon Bolliger  11:26

Makes sense.

Rhonda Nelson  11:28

You know, I think the typical our typical western diets are kind of…they have a relatively high omega six to three ratio. So if you try to reverse that around and do high omega threes, low Omega sixes. Those will…that will reduce…should reduce, I should say, some of the inflammation within your body. And I can tell you just simple things that you know, if I eat things that I know are very high inflammatory foods, I can tell it just in the way you feel it in your joints. You know you feel it in your hands and your knees. So but if you…if you have…if we follow the Western diet of the high six to three with that high ratio, those eliminate it can eliminate and create deficiencies within EPA and DHA. So I supplement with a lot of supplements, histamine blockers, things like that. I also, you know, as much as we’ve over the years, been taught exercise, exercise, exercise, it truly does help to keep things moving and keep that inflammation down in your body. And I don’t believe that patients, I don’t believe anyone has to be in a gym for 1,2,3,4, hours a day like I have a routine that I do about 30 minutes, 20 minutes of exercise. I use a rebounder. I have an infrared sauna, which is huge. I also have a Swim Spa. So I swim, anything walking, do a 30 minute walk, anything to keep your body moving inside, will help reduce that inflammation. And then the other thing that I have really come to rely on is red light therapy. And I think the more that we study the red light therapy, realize how important it can be in someone whose body is full of inflammation.

Manon Bolliger  13:57

So what do you know, or have you heard of the mechanisms why aspirin would trigger such a cascade? We know it causes hemorrhage in the stomach. Is one of the biggest causes of, you know, death by bleeding. But, yes, but what is the mechanism?

Rhonda Nelson  14:26

It has to do…and now we’re getting into a part that is, it’s a very scientific part that I am not great at explaining, but it has to do with the leukotrienes within your body and that kind of production and so, you know, I think the big question is, for me, why does or why would Aspirin create this reaction in one person and not in another? And if we go back and we think about, you know, we’ve been told for years to take a baby aspirin for cardio health, right? So you know that, to me, is still like the magical question that I would love to have answered, like, why does this happen in people, especially when we use, we’re a society that uses aspirin a lot or incense. I mean, we use them a lot, good or bad. It’s a fact, right? And so I don’t know. I can’t…I can’t really scientifically answer that question. I just know that it is a chemical imbalance that then causes an overproduction of leukotrienes and all of these other issues with your cells, and that then it creates the response.

Manon Bolliger  16:06

Yeah, I wonder if it’s in people that are…have a tendency to, you know, to have a greater inflammatory response, you know, because it’s also the receptor, you know, the environment that is hit by a thing, which is probably why it’s hard to take it off the market, saying, hey, it causes this harm, right? You know, because they can always say, Well, you know, apparently, though that needs to be proven, but that it can do good for this or that reason, right? Yeah, so it’s…so there is that susceptibility, which would seem like a factor, but is that dietary? Then is it, you know, is it people that have tended to have to be high inflammatory. Just start with, right or not, you know? I mean, that would be another question.

Rhonda Nelson  17:11

Because, yeah, because I feel like statistically, it’s not common in children, right? So then that would bring me to exactly your point that you just made. Is it connected to people who, you know, to diet, where people have ingested high inflammatory diets throughout a period of their life? Could be, you know, or is it connected to…there are no studies out there that I know of that I’ve found where we see that a percentage of AERD patients have other like autoimmune or inflammatory issues. If when you go…when you do a deep dive on AERD, you kind of come across the same kinds of studies.

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Rhonda Nelson  19:09

And it’s like, it doesn’t go any farther than that. And then for me, I’m like, Well, why? Why? Why do we not have a link, like, if a person has XYZ autoimmune disease, are they more susceptible to AERD? But it’s that research is just not heavily there right now. And I think to, you know, we hear a lot about diseases like Lyme and all and POTS and all this other stuff and those are really in the forefront right now. And I don’t know. Why AERD at this point isn’t because two of the components, like I said before, are very common, asthma and nasal polyps. So it’s a bit of a mystery to me, a frustrating mystery, why it’s not a little more common?

Manon Bolliger  20:16

Yeah. And then there’s the whole environmental bit, you know is it the location where, either by, you know, geoengineering or more spraying, or more glycophosphates or more something you know that it changes the the foods that are available for people.

Rhonda Nelson  20:38

Correct.

Manon Bolliger  20:39

That may lack of mineral or that, you know, so, I mean, it could be if, and that’s the thing, is, there’s no research there, because there’s no interest by some of these pharmaceuticals to improve their product, right? It’s, you know, so…

Rhonda Nelson  20:58

And what, what’s interesting is some of the pharmaceuticals that are making aspirin and NSAIDs are also the ones making the biologics, so or the other drugs that we take for this disease. So one is, quite frankly, poisoning you, and one is poisoning you in a different way to control the first one. So it is…but, you know, even in a simple, I mean, we certainly know how simple drinking water can vary from one area of the country to another. And, you know, is there something that we’ve ingested in that way that is created this perfect storm within our bodies. So there’s, there’s a…it is frustrating because as a atient, I don’t feel like there’s still a lot of research, and I feel through the forums that I’m on and the people that I interact with, patients, other patients, they’re kind of at…some of them are just really at their wits end with it. Because, I mean, knock on wood, I am extremely lucky. I feel like my symptoms are extremely well controlled and but, you know, I hear from people in the UK they don’t have the same access to some of the medications that we do. I could get on a whole nother bandwagon about the situation with insurance and what it will and won’t cover, you know? And when we had talked about a little bit earlier, some of the less common modalities that I use, the other thing that I use a lot is chiropractic and also acupuncture. And I will tell you, I said this many, many times, I don’t understand why these modalities aren’t covered under our insurance, because these are being proactive to keep me out of the emergency room and a patient can spend 1000s and 1000s, I do every year, because none of that is covered under insurance. And so that’s a whole nother, like I said, that’s a whole nother box to open up.

Manon Bolliger  23:35

I think you know, what you’re bringing up is very important, because it’s like the microcosm of a much bigger re questioning of everything you know we see in a parallel way that you know, Pfizer, for example, you know, was very linked to causing myocarditis, and then they have the drug to, so called solve myocarditis, you know. So it’s like, so create the problem and the solution in the same market. And it’s a tight, tight, small pharmaceutical market. And then you, you know, you basically work in a system that doesn’t allow dissent or opinions that are contrary to the narrative, and everyone’s paid off one way or another. I’m simplifying it, but I mean, it’s kind of the same parallel. And you if you look at into Lyme disease, it’s the same story. It gets…it’s also complicated. All of them are, but they all share in common that we don’t have independent for the people boards that can research and actually get answers because they’re all sponsored calls, so sort of in this circle where we’re not going to find the answers in the system that created the problem in the first place. It’s almost like we need to strengthen our bodies and, you know, create the research and all of that from a non financial perspective, which is very challenging in a world bearing by money.

Rhonda Nelson  25:29

Yes, and you know, it’s exactly the thing, the companies, the pharmaceuticals, that are creating the issue create, they hold the key to anything that can somewhat make it manageable, right? But they don’t want to share in any kind of research, because if they cut those two things off, then they’re losing money hand over fist. So it’s, it really is sad, you know, I but I believe it, it kind of goes farther than that, too. I mean, even something as simple as the food we eat. Let’s take chicken and we look at a chicken farm, and we look at what they’re injecting into the chicken, or spraying on the feed, etc, etc, and then we go and ingest that. I mean, there’s no wonder our bodies are in these perfect storms because of this vicious cycle that we’re in. And it’s really heartbreaking. And quite honestly, I feel for the younger generations that are coming up in today, because I think at least mine and your generation and those before us, we knew the value of homegrown foods, and we knew the value of not injecting things in the foods to make them last longer, and we didn’t have, I mean, my parents had a garden. My mom canned and we ate fresh vegetables and all of that. And that’s just not I think we are seeing people getting back to that, because they see what is happening, but it’s nowhere near the massive amount that can solve problems right now. You know, you’ve got families or communities doing these things, but this is a this is a big world. It’s a big country. So I don’t know, I don’t know.

Manon Bolliger  27:42

But it’s little by little, right? You know, yes, it’s, you know, supporting the farmers, realizing that their struggle is part of the bigger picture as well, right? You know, have to do the land grabs that are happening everywhere. And, you know, put the farmers out of the possibility financially, to keep their farms. You know, it’s all connected. I think it’s time that we get the big picture and go, Whoa. You know, we’re sovereign human beings. Who are these people that think they can run us? Right?

Rhonda Nelson  28:21

I also think it’s really interesting…oh oh did we freeze up?

Manon Bolliger  28:25

And ask questions. I think it’s a it’s an exciting time.

Rhonda Nelson  28:30

And I think I find it interesting that, especially around here, where I live, there are weekly multiple multiple farmers markets, and I love seeing how crowded they are on each market day, because that says to me that people are opening their eyes. They’re realizing that I’m with I say this without a doubt, the food that we intake is our health is directly related to that, because so much of the food has been manipulated. And so it excites me to see families opening their eyes to this and going back to the natural things that we know are good and healthy. And it also excites me, because it means there’s starting to be a pushback against the big corporations and the big pharmas and all of these, and we’re leaning in to the small business people. And that is…that to me, is what America is, you know, and so I don’t know, I don’t want to get off on a I don’t want to get off on a tangent, but it’s all related.

Manon Bolliger  29:54

The thing is, I think, you know, by not relating it, we do sort of a service at this moment of awakening, I think people are seeing that it is related and so not to speak to it is kind of pleased to say you are what you eat. Well, it’s still true.

Rhonda Nelson  30:14

Yeah, absolutely. I believe it is 100% and I, you know, and I, again, the path that I chose and still adhere to with my AERD is I really lean into a lot of these therapies that aren’t conventional, that aren’t covered by insurance, and I know without a doubt, these therapies have made a world of difference in my management of the disease, and so, you know, I just, I feel so fortunate and so blessed that I’m able to do this, but what I don’t like is when I hear people say, I can’t even afford the medication that they’re trying to give me for the disease, much less go do something that’s not covered in some way. And so, you know, I don’t know, and I don’t know if in my lifetime, any of that will ever change. It is such a big…to me it’s a big game. It’s a chess game, almost, of how things would have to change and will we see that I don’t know, but I do know that if people don’t start opening their eyes more to this, it’s going to get worse instead of better, and it’ll be where they’ll just be, you know, forcing you’ll be forced to take all these drugs because there’s nothing else to do to treat a, you know, a disease that you might have. But I think we’ve all heard and there’s so many people out there. One comes to mind. Her name is Danielle Walker. She does against the grain she’s got, and she literally healed herself to a point of having an amazing quality of life from her diseases with the food. And she’s now created these cookbooks, and they’re just amazing. And it, you know, it’s they’re not hard. It’s simple, easy foods. We don’t have to put all these other additives into those foods. So there are those stories out there that are absolutely success stories with a simple…

Manon Bolliger  32:52

There’s a…I think we’re an accelerated time.

Rhonda Nelson  32:58

What? I’m sorry you cut out on that one.

Manon Bolliger  33:00

Yeah, no, I was just saying, I think it cut out again. But yeah, I do think we’re in an accelerated time where things are becoming more clear to people and people need to stand up and make decisions that are right for themselves, their family and you know, ultimately, you know, their country, the university. You can go, Yeah, you know, but yeah, no, we’re an exciting time. So I think, you know, these discussions, to me, always make me happy, because they’re bigger, you know, they’re getting at the problem. And yeah, we are the answer, that’s the thing, what we do individually and what we show as an example, and who we buy from, and who we support our voting. Those are voting dollars, right?

Rhonda Nelson  33:53

Absolutely.

Manon Bolliger  33:55

I think that those are little ways in which change happens in big ways.

Rhonda Nelson  33:59

Yeah, and, you know, I always like to say too, even if I’m only making a change for myself, my family and maybe a handful of friends, at least it’s made a difference. Right? And so then maybe those people employ on others the importance of these, of looking at these things and deciding what is right for you and your body, not being told what is supposedly right for your body. And so you know, you got to take baby steps before you can walk and run?

Manon Bolliger  34:42

Yep, definitely.

Rhonda Nelson  34:44

That’s kind of the way it is.

Manon Bolliger  34:46

Well. Rhonda thank you so much for sharing. Our time is already up. It’s crazy. It was so fast.

Rhonda Nelson  34:53

Thank you. It was so great to talk to you.

Manon Bolliger  34:56

And thank you for sharing. Thank you.

Rhonda Nelson  34:58

Thank you. Take care.

Ending

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