18 Years of Autoimmunity...Now Healed

a mind of your own autoimmune disease joe rogan lupus remission vital mind stories
 

Cindy was medically hexed with a Lupus diagnosis 18 years ago, after the birth of her son. In the wake of this, and because of sociocultural conditioning around the fate of someone with this potentially serious autoimmune condition, she shrunk her life to fit what she thought should be the experience of a sick woman. She felt unwell, took multiple medications, sometimes for unknown indications, and she said no to many opportunities. That is, until she said yes to her next chapter. A chapter marked by total remission and shedding of her diagnosis... within weeks of lifestyle change. It is my deepest hope that every person on the planet knows this kind of radical healing is possible. And that it can feel great.

Dr. Brogan, I wanted to send you a heartfelt thank you for changing my life. I was diagnosed with lupus 18 years ago, 7 weeks after the birth of my son. I believed at the time, it was a death sentence. My friend Scarlett heard your interview on Joe Rogan and sent me a link to the show. That day, that interview, and that moment changed my death sentence. I listened to the interview twice! I bought your book. I followed the protocol for 14 days, because that’s the best I could do at the time. I went to my rheumatologist after this two weeks and had routine blood work done. I felt good. After my blood work came back I went for the results.

My doctor told me that there were no signs of lupus or antiphospholipid syndrome! I nearly fell off the table! I got this letter from him and cried happy tears all the way home. I signed up for your online program and am almost finished. I feel a sense of happiness and vitality that I haven’t felt in many years. I believe that my diagnoses may well have been food sensitivities. Your program and your knowledge along with all the hours you spent researching this have changed my life. You and my friend Scarlett have my deepest gratitude. Thank you for pioneering your program and helping people like me.

Sincerely, Cindy

Full Video Transcript

Dr. Kelly:  Hi, everyone! So I am here today with Cindy. And Cindy is not a patient, never has been, of mine. And we are connected because of her story of radical remission of a chronic autoimmune disease.

And this is the kind of conversation... this is why I wake up in the morning. This is literally why I wake up in the morning because I feel so passionately that everyone needs to know that these kinds of seemingly unexpected but actually what can be quite predictable once you sort of enter into this realm of holistic healing, that these kind of outcomes are real.

Dr. Kelly:    And so, I want to just—I’m hearing feedback, so I’m just going to put on my headphones. Let me see if this helps. Is that better?

Cindy:   Yeah, that’s a lot better.

Dr. Kelly:    Okay, good. So, I didn’t say anything important. It doesn’t matter.

Dr. Kelly:    So, Cindy, I want to start by sort of backtracking in your experience to when was the first time that you entered the medical system. When was it that you were, as I sometimes say, hexed? When was it that you were labeled with this term that then had the potential to shape your future?

Cindy:  Well, I had my son in 1999. And seven weeks after I gave birth to him, I found out that I had Lupus, systemic lupus. And I had found out because I had swelling in my breast. I almost dropped him. He didn’t weight much, but I almost dropped him.

So, along with that, I was also diagnosed with Antiphospholipid Syndrome which is a blood clotting disorder that typically goes hand in hand when you have Lupus. That’s what I was told.

The diagnosis, when I first got it, the doctor called me and said, “I tested you. You’re tested positive for Lupus, which you have to have four out of eleven tests to come back positive.” And he said, “I don’t know much about it. You may want to get on the Internet.” That’s the kiss of death. That began my story.

I fell to my knees. My mom was here with me. I fell to my knees. I thought I was going to die. I thought I was going to die.

And so I lived the next 18 years trying to figure out how do I get rid of this? What have I been vexed and hexed with? What is this?

So, I figured out some things along the way, that I needed more rest than the average bear. And I had to take care of my son, so I worked out. And I’ve been doing crossfit for the last eight years. But I felt more tired than I probably should have felt all along.

So, that’s how I ended up knowing that I had something wrong with me.

But the way that it manifested itself in me was I was unwell, I just never felt quite right. I also had—what I didn’t know, but what I know understand from you—is an alarm system built in within me. And what would happen when I would eat sugar, gluten, corn, soy, dairy, all of the offenders that I now know affected me, I would get synovitis. And that was another diagnosis. So the synovial fluids in my joints would inflame. It would swell. And it would hurt like the dickens. I couldn't even grip the steering wheel after.

I lived my life like that. I couldn't do many things. We like to go and be active just with three people in my family. We like to do lots of things. And many times, I couldn't. I just couldn't.

Dr. Kelly:   Because you weren’t able to make that connection between cause and effect. And so, I imagine that like 9 out of 10 people in your situation, just trying to live life with these seemingly unpredictable symptoms, it became very challenging. And I’m guessing, at some point, you opted for medication?

Cindy:   I did, I did. Initially, what I got on, they put me on Zoloft.

Dr. Kelly:  Oh!

Cindy:    They thought maybe balancing my hormones in some way might have an effect on the Lupus itself. And so my question then was: “How do antidepressants balance your hormones?” and the doctor literally said, “Well, they don’t. But it’ll help you get through it.”

Dr. Kelly:    Yeah, so sort of like “take the edge off, do yourself a favor, make this a bit easier for yourself” kind of a thing, yeah.

Cindy:   So, I ended up on a slew of medications. I’ve had Lupus for whatever, for 18 years. So I’ve had a whole host of medications that I’ve been on from steroids, the Prednisone I was on from time to time whenever I got inflamed, whenever it would get really bad.

I was on Plaquenil which is what another told me “This is the vitamin they give for people who have Lupus.” It’s an anti-malarial drug. And its major side effect is blindness. You can go blind with it. And I got to the point where I felt so bad that I would rather be blind. I’d rather take a chance and be blind than to feel the way I felt.

It helped. I don’t know if it was psychomatic or it was real. I really don’t know. But after I got on that, I also had some other digestive issues. I was on Nexium and I was on an aspirin for the Antiphospholipid Syndrome. I was on the Zoloft at one point and Ambien because I couldn't sleep well.

So, over the course of the 18 years, I was on and off all of those medications—and more. There’s more that I can’t even think of right now that I’ve been on because I didn’t feel well.

Dr. Kelly:   And so many people end up coasting in this sort of survival state, right? So, what happened to bring you to a point of readiness, of awareness, of a felt entitlement to a different kind of life? How did that light switch turn on?

Cindy:   It was all by chance honestly. I really think that this was—

A sweet friend of mine named Scarlett sent me your podcast with Joe Rogan. And I don’t hear from her often. But she said she had heard it, and she thought of me. And she thought I might want to listen.

I listened to it twice in a day. And it’s over three hours long.

So, when you were speaking, when you were talking about what was going on with inflammation and autoimmunity, my jaw was on the floor. I couldn't believe it. I cried. I literally could not believe you were saying what you were saying because I thought “That’s me!”

Dr. Kelly:   So, you never heard these concepts before. But when you heard them, it felt true to you?

Cindy:     It felt true. No, to be honest, I have been searching for something. I followed Rob Wolfe. I was aware of the Paleo Solution. I’ve been a crossfitter. So I knew about some of the elements of this, but no one had ever tied it all together. I have never heard it packaged like you do, the science behind it. The gut, I had no idea that my gut was the major problem.

So, once I got that information locked in, that was my aha moment. I was like, “Okay, now I get it. This might be what was wrong with me the entire time. And I didn’t know it.”

I had a Celiac test. And I wasn’t Celiac. So I disregarded it and I thought, “Well, I guess I can eat this.” I had no idea that I had a sensitivity that was causing all of these underlying issues.

And it’s real. It’s true. I held on to my letter from my doctor telling me that I was in remission from Lupus and Antiphospholipid Syndrome because I wanted to make sure “Is this really real?” It really is real. I couldn't believe it.

And I can tell you it’s real because I feel it. I know it’s real.

But besides the other symptoms that I had before which is the achiness and the unwellness, I was always hungry. I’m never, ever satisfied. And so, low blood sugar, hello? I never even thought of it. It didn’t even occur to me. And it makes perfect sense!

But I dug into your work. I bought your book. And it makes so much sense to me now. And I will never go back. I will never be who I was before. And I thank you for that.

Dr. Kelly:  It’s amazing because I often say that the best teaching is simply reminding you of what you already know, just bringing to your awareness what’s inside buried.

So, once you’ve sort of had that experience, what did you begin to implement? What became your lifestyle shifts and changes? What did that look like for you?

Cindy:     Well, that was where I started following your diet. And I knew it wasn’t gimmicky because it’s just taking out what’s good or bad for you.

So, I started taking out gluten. I started by eating all the same thing that you said in one of your earlier podcast. I was laughing because I was eating the gluten-free options and things too. And that didn’t make me feel better. But once I took out of the grains, all of the dairy—which included having to take out coffee because I drank cream in my coffee.

That was difficult. My husband would bring me a cup of coffee every single day. And that was our original […] He now brings me a cup of hot water with a little sweet lemon in it and he goes, “Here’s your coffee!”

But I knew that taking out these foods—I mean, I could see it. I remember eating a cupcake when my best girlfriend and I went out. I said, “Well, I want a cupcake.” We went to this bakery, and I had the best cupcake ever. And I said, “I’m going to swell up.” See, I knew this. “I’m going to swell up.”

And she said, “Well, why are you going to eat it?”

I was like, “Because it’s good.”

And so I did.

And within two minutes, I’m so swollen that I can’t grip anything.

Who does that? I did. For 18 years, that’s what I did because it was good and I craved it, I wanted it. And as crazy as that sounds, I didn’t put two and two together. I didn’t know that that’s what is doing all of these to me.

Dr. Kelly:     Well, it’s difficult to make that connection mostly because the medical system sets you up to be at war with your body. All of the medications were in service of managing your body into submission. So why would you ever be sensitized to the meaning of these symptoms. They’re just annoying. And you’re just going to try to get rid of them.

Cindy:    …which makes me think of another time I was put on birth control pills (which is the progesterone only) to mask the symptoms of the synovitis.

Dr. Kelly:    Oh, wow!

Cindy:    And it worked. It worked… until it didn’t.

Dr. Kelly:    …until it didn’t. No free lunch, right?

Cindy:    No.

Dr. Kelly:   So, you had what I understand to be a pretty rapid response in terms of symptoms. Relief came quickly for you.

Cindy:     Yes. Well, my symptoms, they screamed at me. I would have flare-ups often. And they were right there, right in my face.

So, when I treated myself with the diet protocol, taking care not to eat any grain, really reading labels, and taking off the sugar, the dairy, the corn and the soy, all of the offenders that now I know cause me to flare, that’s what unfolded. “I really don’t have this. How does it go in remission that fast?”

Dr. Kelly:    Yes. It was in weeks, right?

Cindy:    Yes. Yes! I mean, how did that happen?

Dr. Kelly:      And so, tell me. I’m just so curious of how that interaction with your physician went.

Cindy:     Well, I’m in there for my testing again. I had gone into the laboratory I guess before—I guess it was right around the time when I started dabbling in the diet. I could only do it for about two weeks the first time I tried because it’s hard! And when you first start, it’s hard. I’ve been doing it for a while now.

But I went into the laboratory, and I got my blood work drawn. So by that time I saw him a couple of weeks later, that was when he delivered the information. He said, “You’re asymptomatic. None of your blood levels and your labs are indicating that you have Lupus.” Well, I nearly lifted off the table. I was like, “What?! What did you…?”

I’ve been seeing him for a long time. He’s the second rheumatologist that I’ve seen. And I’ve seen him for about five years. And he said, “You no longer have Lupus.” I was like, “You’re kidding me, right?” And I said, “Can you write me a letter that said that because I need to send it to my insurance company because I can’t get life insurance.” When you have Lupus, they don’t want you.

So, he said, “Yes, I can.” And he said, “I’ll do this. I’ll write you a letter that states that you’re in remission of Lupus and your Antiphospholipid Syndrome.”

I couldn't believe it. I got in my car and I bawled.

Dr. Kelly:      I know! It makes me tear up. It’s so beautiful.

Cindy:    I cried. I cried so many happy tears. And then, grief. How awful to have to go through 18 years of your life like that because you don’t know what you’re telling people? I didn’t know.

And once I heard it, it all makes sense to me. And thank God for you for packaging it together and for realizing your purpose because it changed my life. Huge!

Dr. Kelly:  It’s a challenging aspect of this, right? So many of the women that I talk to—and men—who have recovered and shed these diagnoses, they have that grief and sometimes rage. And the reality is that you had to be ready. You had to be ready to live this lifestyle.

Rilke has this quote from a poem that’s about how “we have to live the question until we are ready to live the answer.”

So, we need to sort of, for whatever reason, sit in the muck for a while, some of us. And then, one day, it just all shifts.

And what I love about your experience, Cindy, is that so many people believe that it needs to be this linear pattern of get a little better, a little better, a little better. And sometimes, it’s a quantum leap. And you’re living proof of that.

And to have that reflected by the medical establishment is such an unusual gift. To be unhexed in this way has got to be so liberating to your pysche.

Cindy:    He said to me, he said, “I don’t know what you’re doing, but keep doing it.”

Dr. Kelly:      I don’t really want to know. Let’s not study it.

Cindy:    I know. He’s very sweet. He was taking his 10 minutes that doctors will really give you, looking at all my labs and everything. “I don’t know what you’re doing, but keep doing.” Okay…

And you know, one of the things, if you do have—I mean, I consider it miraculous. It was a huge lift.

One of the things that you talked about also is this is your currency. Not feeling well is your currency. This is how you kind of navigate the world.

[…] That’s who I had become, “I’m the girl who have Lupus. I can’t do these things. I might not feel well, so I better not sign up for this.” And I can’t do a lot of things. I limited myself because that was my currency. I’m all into how I felt.

But I don’t feel that way anymore. I’m not. I know part of it is a mindset. I didn’t necessarily have the mindset first though… I felt it. I felt so different after taking all of that out of my diet that that was the evidence.

I’m evidence-based. I needed the evidence first, and then I would believe it. And that’s why I was like, “This is really happening. I couldn't believe what I was seeing.”

Dr. Kelly:    So, that was 100% my experience too with my own autoimmune condition. I felt so different. I didn’t realize how many things were not right. I felt so different. And that’s what inspired me to sort of really profess with the mindset shift.

So, I’d love to close on aspirations that you now are allowing yourself to have, whether it’s around self-care or sort of personal care or whether you’re just in this place where you’re comfortable not knowing what’s next and just sort of sitting with that.

Cindy:    You know, I started volunteering at the Dallas Museum of Art after I got released from my diagnosis, I guess if you will, because I wanted to do something. I wanted to do something to give back. And that’s where my heart went.

Dr. Kelly:      I love that.

Cindy:    And I never would’ve done something like this before. And I love it! It’s so much fun.

And I had to give kudos to my husband because he’s been such a cheerleader. He’s such a supporter of mine the whole way, trying to help me, educate me. And every step that I take with this, he’s supportive.

He laughs. He says, “I better not leave my coffee laying around anywhere because we don’t know where it might end up.”

Dr. Kelly:     Oh, my God! That’s a valid concern. Oh, that’s funny.

Cindy:     It’s true. It’s true. He’s been so sweet to me. And I think he may be more excited than I am about this whole journey and this process and the relief of the diagnosis that I don’t have anymore.

Dr. Kelly:     And it’s such a powerful reminder, right, that the greatest way to love those we love is to take care of ourselves. It’s the greatest gift we can give to the people in our lives that we care about.

And so, gosh, I just find everything about this experience that you shared to be a confirmation of what you and I and so many thousands, maybe millions, of others at this point are beginning to understand, which is that you weren’t told the whole story about our capacity to heal and to awaken to an experience of our bodies, our lives, our possibilities.

And of course, your first impulse is to serve. The beauty in that is so profound.

So, I want to just thank you from the bottom of my heart for sharing this message.

Cindy:     Thank you! Thank you for all of the things that you do, for putting this together and getting this out to people like me. You truly changed my life. And I appreciate you so much. Thank you.

Dr. Kelly:    Oh, it’s the perfect partnership.

Cindy:     Yeah!

Dr. Kelly:    So, thank you, Cindy. Be well!

Cindy:    Bye.

 Cindy’s case is pending publication in a peer-reviewed, indexed medical journal.

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About Dr. Kelly Brogan

KELLY BROGAN, MD, is a holistic psychiatrist, author of the New York Times Bestselling book, A Mind of Your OwnOwn Your Self, the children’s book, A Time For Rain, and co-editor of the landmark textbook Integrative Therapies for Depression. She is the founder of the online healing program Vital Mind Reset, and the membership community, Vital Life Project. She completed her psychiatric training and fellowship at NYU Medical Center after graduating from Cornell University Medical College, and has a B.S. from M.I.T. in Systems Neuroscience. She is specialized in a root-cause resolution approach to psychiatric syndromes and symptoms. Learn More