Jill Brook: [00:00:00] Hello, fellow POTS patients, and beautiful people who care about POTS patients. I'm Jill Brook, your horizontal host, and today we have an episode of the POTS Diaries with Julie. Julie, thank you so much for joining us today.

Julie: Hi. Thank you for having me.

Jill Brook: So for starters, do you wanna give us just a little bit of background, like where are you, how old are you? What are some basics to know?

Julie: Of course. Well, I'm in Alabama, 25 years old, and I used to be very active in my life. I was a long distance runner and I still love running, but over the years, the stuff that has happened and POTS, you know, I haven't been able to do that. But that was my life before. And I'm currently in college right now working towards my master's because I've overcome POTS and I've healed from it.

I'm able to do stuff like that now, which is very exciting, and I can't wait to share it with you.

Jill Brook: Oh my gosh. Yay. Okay. I can't wait to hear this [00:01:00] story. I guess first how would your friends or family describe your personality?

Julie: Quite reserved. I'm very introverted, but once people get to know me, I warm up and I'm, I feel like I'm quite humorous and I'm nice. I'm kind. I try to be kind to everybody. So probably quite reserved I would say.

Jill Brook: Well thank you for being here today to share your story. So if we could kind of back up a little bit in your story, I know before POTS or anything like that hit, when was that and what did your life look like at that time?

Julie: So, a year before my POTS would put us in 2021, but I'm gonna back up to 2020 'cause that's kind of when it first started. Well actually I'm gonna back up to my childhood because I feel like a lot of POTS patients, they can go back to their childhood in like areas when they passed out and they can kind of connect.

So I first passed out in fourth grade. I got [00:02:00] overheated, passed out, but I woke up, I was fine. No POTS symptoms. I did have blood pooling as a child. Like when I would get outta the shower, my feet would be pooled with blood. But that was it, you know. It did not affect my daily life. I didn't have heart issues with that.

And then I passed out again from the heat, again recovered, and there was like a couple other times with that throughout my childhood, but recovered completely normal, no POTS symptoms. And then 2020 came and I got COVID. And I was a long distance runner. You know, I was running every single week.

I was in track. I cheered at high school. You know, the list goes on. I was very active and I got COVID and I couldn't run anymore. It attacked my lungs, we think. And you know, when I had COVID, I had intense chest and back pains and we never figured out what it was, but I never had stamina after that. I couldn't run.

And then a month later I got mono [00:03:00] and I got Epstein-Barr virus for the first time. And that just, it, like, I couldn't get rid of it. They didn't know it was EBV, so they kept giving me antibiotics and that just ruined my gut. And I was not well versed in any kind of healthcare. Like I just went to my doctor every year and that was pretty much it.

I didn't know anything about antibiotics. I didn't know they were bad for your gut. I didn't know any of that. So then May 2021, I got Lyme disease.

Jill Brook: Oh no.

Julie: So we're in an eight month period of where I got COVID, mono and Lyme disease. And I'm still battling with the mono when I got the Lyme. And I did not know I had Lyme disease. I didn't know I got it. I knew I had ticks on me, but I didn't know it had Lyme. So then I got surgery to take my tonsils and adenoids out June 2021, 'cause they were so swollen from the EBV. [00:04:00] Still didn't help. I had extreme fatigue through all of this. December, 2021, I had shoulder surgery because I have Ehlers-Danlos Syndrome, hypermobile, surprise, surprise.

I feel like everybody with POTS has that. My labrum was completely gone. It got torn out. I don't know from what. It was just like that. And I passed out after that surgery. And I think this is when the POTS started to show itself. So I, I recovered from passing out.

I didn't have any POTS symptoms, but I knew something was wrong. Like it was not normal. It was three days after surgery. I wasn't in any pain. I wasn't overheated. Like, there was just no reason for me to pass out. And four months later I was at work. I was recovered from the surgery and I had a bad head cold, and I think it was a flare up of the EBV 'cause I was still dealing with it.

I still had Lyme. Like it was still [00:05:00] just, my body was very overloaded and work was stressful. I worked a night shift. So I was at work. I was, I remember feeling extremely hungry. And I was trying to get my work done and go to lunch and I got vertigo. And I get vertigo when I pass out. Like that's, I have seconds before I'm gonna pass out when I get vertigo.

And I was so confused, 'cause again, like I wasn't overheated, like I wasn't straining myself. But I was extremely hungry and this hunger was just very confusing to me and I couldn't focus. And then I woke up on the floor, and thankfully I worked very closely with paramedics, so they were right there when it happened.

And they took my sugar and it was 42, which is very low. And again at that time, I had no idea about any healthcare stuff. I wasn't well versed in any of it. I never had low blood sugar like a [00:06:00] problem. So I just got up and I was like, oh, I'm fine, you know, I've passed out plenty of times. I passed out four months ago.

Like, I'm fine. There's nothing wrong with me. And I just went to my car and I tried to eat, but I was nauseous 'cause my blood sugar was low. And I, I just felt like a truck had hit me all night. And I, looking back, I should have went home or went to the hospital, but I stayed at work. The next day I called out. I still did not feel my POTS yet. I went to the doctor, blood work, they said everything was fine. And it was not until I went back to work two days later and the walk from the parking lot into the building to where I work, that's when I felt my first POTS episode. And with my POTS, I, I never passed out. The last time I passed out was when I got my POTS that night. But the first episode, I [00:07:00] got really, really sick to my stomach and I had to go to the bathroom. And my heart was racing and I got really bad vertigo. And it was like those were my episodes every single time I would stand that that would happen.

And that was like a month or two of very extreme vertigo, like extreme high heart rate, like in the two hundreds when I would stand. And having to go to the bathroom every single time too. That was like two months. The first two months.

Jill Brook: Wow. So what did you think was going on?

Julie: I mean, I think that is when my body made the switch to like the fight or flight and like stayed in that. And so I think it was just so intense that when I would stand, it would just, like, it was just so intense. And looking back, I thought during that time I thought I had a stomach bug.[00:08:00]

Like I thought that's what it was, 'cause I had a head cold when I passed out. And so I thought I was just sick. I was like, this is a bad virus. This is just the EBV. You know, the doctor said my blood work was fine, so I didn't really know what was going on. So I just, I pushed through it and I kept working and I mean, I was going to the doctor, but they were like, you're fine.

There's something wrong with you. You, you know, you have anxiety. And I was like, I, I don't have anxiety, but okay. And so I just pushed through it and eventually like, it, it did get better. You know, I, I wasn't having to go to the bathroom every time I would stand. The heart rate was still there, but the vertigo wasn't really there anymore.

I would just feel like I was gonna pass out. You know, like I had the really high heart rate. I was out of breath and I would feel lightheaded, but the vertigo went away. And, you know, having to go to the bathroom every single time I would stand up went away. So, you know, I was like, [00:09:00] okay, you know, maybe this will go away.

Maybe this isn't permanent and I'll be fine. So I kept working, I got POTS March, 2022 and I kept working all the way till October, 2023.

Jill Brook: Wow. And you were just putting up with those symptoms the whole time.

Julie: Yep. Every single time I would stand or even like move, like stretching my arms or like grabbing stuff, my heart rate, it would, it was not in the two hundreds like it was the first two months, but 160 was about where it would be at when I would stand and it would make my blood pressure high.

Jill Brook: Okay. Now I'm glad that you already told us that you overcame your POTS 'cause this is sounding really dramatic, so I'm excited to hear, okay, so then what happens?

Julie: Yeah. So, so I would push through everything and the first year, like [00:10:00] basically the whole time I'm working with POTS, I'm in my head telling myself I'm crazy because that's what the doctors are telling me. And that's not good. I still like, look back, I'm like, oh my gosh, how did you even do all of that? Because it, it was a lot. But I, I went to multiple, multiple doctors throughout that year. I would take like, work off, like I would get off early to go to a doctor or like come in a little bit late to go to a doctor. And just, it was just one after another. You're crazy. You know, here's some anxiety medicine. And I was like, no, I'm not gonna take that. Like, I can't, I don't wanna do that. Because I, I felt like it would've helped me, like get through the day better, because obviously having a high heart rate does give you some anxiety. You know, anxiety's not causing it, but when you have the heart rate, you feel that anxiety.

And I was like, I'm not, I don't wanna push even harder than I already am. I don't wanna [00:11:00] take this medicine and, you know, be fine with my heart rate that high and like push even harder through it. So October, 2023 I was like wiped out mentally, physically, I couldn't do it anymore. I could not even get outta bed. I had already went to so many emergency rooms, like from bad episodes and the really bad one before I took my FMLA leave from work, I was like fed up with everything, I think I had just came from a doctor's office that told me I was crazy. And so I was just like so, so mad, so upset, and I was like, you know what, today at work I'm gonna act completely normal. I'm gonna do everything like a normal person. I'm not gonna sit down. I'm not gonna do anything, and I'm just gonna be normal. And I did. I pushed through everything. I didn't sit down. I was back and forth, back and forth. And I had the [00:12:00] nurse, 'cause we had a nurse at work, and I had her take my blood pressure at the start of shift and when I'm sitting down it's normal. It's not till like when I have like a bunch of episodes from standing, that's when it gets like wonkitty. So I had her take it and it was normal-ish and I had her take it again an hour later, and it was high. It was like 160 over 110. She was like, that's high, like, are you okay? And I was like, yeah, I'm fine. I'm normal. I'm normal today.

Jill Brook: Because that's what everyone was telling you.

Julie: Yeah. I was like, I'm normal, I'm fine. And so six hours later into the shift, I had her take it again because at this point I'm like dragging my feet. I'm like, no, I'm normal. I can, I can keep going. And she takes it again and it's like 200 over something.

Jill Brook: Oh my goodness. Oh no.

Julie: I was like, nope, I'm normal today. And I ignored it and she was like, you need to go to the [00:13:00] hospital. It's like, nope, it's fine. It's normal. I'm normal. That's just anxiety.

Jill Brook: Oh, no. Okay.

Julie: So well, so I got a really bad headache. Like it was really, and my shifts are 12 hours and I was like still going. I was not stopping. I got a really, really bad headache though, and I knew it was like something is wrong. And so, I called my supervisor to come, and my mom, and I got rushed to the hospital and as soon as I got there, they called a code stroke, because we had logs of my blood pressure throughout the day and they're like, you have been stroke level for over six hours.

Jill Brook: Oh my goodness.

Julie: And so they called a code stroke and I got wheeled back really fast and they did a CT scan. Thankfully [00:14:00] a stroke did not happen and there was no damage. But they were like, you could have had organ failure. That is really bad. So, and, and it's weird because, you know, my blood pressure's so high, but that whole time of me standing and move around, I felt like I was gonna pass out.

So it's, I think it's weird 'cause a lot of people with POTS, you know, they're like, I have low blood pressure, I have low blood pressure. But with me it's like my heart's compensating too much and causing the high blood pressure. So that was another very complicated piece because doctors, like, it just didn't make sense to them.

But after that bad episode, I couldn't work anymore. I couldn't drive anymore. Anytime I got in a car to drive, I felt like I was gonna pass out. And that was new. Like I was able to drive no problem.

Jill Brook: Like pushing yourself that one day made you kind of go over a ledge.

Julie: I, I think and I'll [00:15:00] get into this a little bit later, but I think it reactivated my EBV, the stress of it, because I was, I was really, I had to stay overnight and I had coworkers come in throughout the night to check on me, and I was just so angry.

Like, I, I didn't understand why it was happening to me, and the doctors kept coming in and saying, you know, there's nothing wrong with you. You're stressed. You know, you have a stressful job. You're young. You know, you just need to take better care of yourself. That was pretty much the gist of it. And I, I got outta bed and I, I was so mad and I, I put my clothes back on and I demanded that I was taking my car and I left.

I, I'm pretty sure my blood pressure got up really high in the car 'cause I had to pull over 'cause I thought I was gonna pass out. And ever since then I, I wasn't able to drive. And this was November, 2023.

Jill Brook: [00:16:00] Wow. But you said you've overcome your POTS, so, so what happened next?

Julie: Okay, so, you know, now I'm on an FMLA leave for my work. Can't work anymore. Can't do any of this. Can't drive. I'm bedbound now. I have home health. My infectious disease doctor is actually the one that, he never called me crazy, never said it with anxiety. He stuck by my side throughout this whole thing, which is just a blessing to have him.

He put me on home health for just saline, 'cause at this point we knew it was POTS from like this one off cardiologist who gave me a tilt table test, and he basically said, you'll have this for life, you know, get used to it, you're gonna be medicated, blah, blah, blah, blah. None of the medication ever worked for me. Surprise, surprise. So at this point, we're just on saline, home health, you know, getting IVs, stuff like that. And then all my work stuff [00:17:00] happens. I, I keep getting calls from different people that I worked with saying that my supervisor's going around telling people that I'm faking it and that there's nothing wrong with me and all this other stuff. The same supervisor that watched me go to the hospital and like have all these episodes. So that, you know, it stresses me out 'cause I have a house, a mortgage, a car payment. I'm like, what am I gonna do? You know? 'Cause I knew they were gonna fire me when my FMLA was up. I, I just, I knew it. And that did happen December 31st.

Jill Brook: Oh my gosh. I mean, so without knowing any details about your medical situation, obviously they just started telling people you were faking it. That's awful.

Julie: So, yeah, and they sent me an email saying that I had [00:18:00] anxiety. And they sent it to two other people that didn't even need to know anything about my medical, like anything. They sent my doctor's name and said that I told them I was diagnosed with anxiety by that doctor.

Jill Brook: Wow.

Julie: It was insane. And of course everybody was like, find a lawyer, find a lawyer. Like that's crazy 'cause they canceled my insurance. They fired me December 31st and canceled my insurance December 31st and did not tell me till January 4th.

Jill Brook: Oh no.

Julie: I talked to them on the phone January 2nd about coming back to work, and they were like, we need to set up a meeting for you to come back. And then January 4th, I got a letter that I was fired on December 31st and my insurance was canceled on the 31st.

Jill Brook: Can they do that?

Julie: No. And I had four doctor's appointments and a CT [00:19:00] scan between the 31st and the fourth. And insurance said they were gonna pay for all of that. But then after the fourth. They said, no, your insurance was canceled on the 31st, and so I was stuck with like, it was like over $6,000 of bills. Yeah.

Jill Brook: Oh, no.

Julie: Yeah.

Jill Brook: We obviously hear a lot of stories where people are made to think that their POTS is just anxiety, but this is the first time I've heard of somebody having rumors told about them at work and getting fired and having their insurance canceled, and oh my goodness.

Julie: At the time that those rumors were being spread, and the whole time I was actively working, I didn't know what was wrong with me. I, I didn't find out POTS until, it was around November, 2023 which was when I was on my FMLA leave, and I didn't share that with them, [00:20:00] but still, they saw me have episodes. I mean, I wore an Apple Watch, like they saw my heart rate high when I was standing. Like they knew that something was wrong. They knew that I didn't know what was wrong, but something, you know, was going on. So there was no excuse for them to act like that. And I still don't know exactly who started it, why it was started, and I probably never will. But I had enough evidence that it was going around and it was coming from supervisors, so...

Jill Brook: And I think the reason you're talking about evidence is because this became relevant. What, what do you wanna say about...

Julie: So, it's relevant because it, it brought a lot of stress on my life and worsened everything. So I had to sell my house. I had to sell my car, and I had to move back in with my mom, which was okay. [00:21:00] I mean, I love her. She's amazing. Thankfully she had a basement for me to put all my stuff in. But it, I went bed bound again. You know, after I was on home health and getting that saline, it helped a lot and I was able to get up and move around a lot more.

But after they fired me and I heard all of that, and, you know, the stress about getting a lawyer and like doing a lawsuit like that was scary and it pulled me back down into the bedbound and not being able to do anything, and I just felt so helpless, you know, and I still was like, you know, maybe I am faking this. Like, I kept thinking that. I was like, maybe I am crazy. You know, like everybody's saying it. So why is it, how is that not true?

Jill Brook: And so to be clear, for people listening, at this time, you did, you did contemplate a lawsuit or you decided to bring a [00:22:00] lawsuit?

Julie: Yeah, so I found a lawyer and the, the first part of the process was pretty long. It was like a bunch of formalities and paperwork. And I, I had to switch lawyers after like the first phase of it was done. And that, that was also very stressful. But in the, in the middle of that, around February, 2024, I was getting more into the holistic medicine part and getting away from traditional doctors, you know, just because of how they were treating me.

And I, that's how I found out I had Lyme disease was a holistic doctor. And so in the middle of the lawsuit stuff and all that, I got a Lyme SOT. And it's like a type of injection that you get, your blood gets sent to Greece, and they send it back over to you and you get it injected and it, it kills off the Lyme basically.[00:23:00]

And after that, my fatigue went away. We were hoping my POTS was gonna go away with it because they've had plenty of people whose POTS kind of disappeared after they got treated for Lyme. But unfortunately for me, you know, that wasn't causing it. But it was causing my fatigue and I, I, it got me out of bed. I wasn't really bedbound anymore. You know, it kind of lifted all that from the stress of the lawsuit and everything that happened when I got fired, it took that burden off. So now we're kind of, we're in May 2024. I'm still very sick. You know, POTS is still very relevant. And I have really bad sinus infection we can't get rid of, like my immune system just can't handle anything. And so I ended up having to get a PICC line and go back on home health. And this is in the middle of a lawsuit where we're trying to argue that I'm healthy, like I can work. Because the whole argument [00:24:00] was that they told people there wasn't a spot to come back to for me 'cause I requested an accommodation, which you have a right to do under ADA and I was like, I, I need an accommodation. You know, I'm not a hundred percent better yet. I need some, you know, I need help when I go back. Which the PICC line, like it didn't disqualify me from going like, that's just an accommodation and stuff like that, but it, it was still stressful. Like we knew they were gonna pick at it and like, try to use it to their advantage.

But so from May to August, I was on IV antibiotics and we also used it for saline, but I was back on home health. And around August I was way better with like holistic medicine and like figuring out what's going on, like researching. And so I was on Reddit a lot listening to other people like, you know, reading about their [00:25:00] stories and I found something called bilateral iliac vein compression or May-Thurner syndrome.

And I was like, no, that's not me. Keep in mind I have every symptom of May-Thurner syndrome. Really bad blood pooling, like extremely bad. But I had had it my entire childhood, so I never realized that I had blood pooling.

Jill Brook: You didn't know anything else.

Julie: No, I just thought that's what happened. And it, it didn't bother me. Like, yeah, my feet got red and itchy and hot, but I just thought everybody's does. So because I, I ran track, so like everybody's complaining about their feet being hot after running all day and like itchy. Like I just, I don't know, I didn't connect the dots and I still look back and I'm like, how did I not connect the dots to that? I ended up getting the surgery.

Jill Brook: You mean a stent placed?

Julie: Yeah, I got four of them, which I, I'm trying not to get too, too far [00:26:00] ahead. So August, 2024, I read about it and I pushed it to the side. I was like, no, not me. Don't have any of those problems. And I just kept digging. I found Stellate Ganglion Blocks. I don't know if you've heard of those. They inject an anesthetic into the major ganglion nerve in your neck and it basically like quiets your fight or flight and allows your parasympathetic system to come on and like take over. And a lot of people who had long COVID or like virus induced POTS, once they get rid of the virus and their POTS is still there, like their body can't really make the switch back. They were able to get these blocks and be like permanently healed from their POTS, 'cause it was just enough to switch that system back over into like a good balance. So I was like, well, you know, I had COVID and mono. You know, maybe this is for me. So [00:27:00] September through November 2024, I got three full sets of them.

Jill Brook: Okay. Wow. And did it make a big difference?

Julie: It did. I was able to do a lot more, like, lot more standing and walking around. I still had my POTS, which was, you know, it, it was disheartening 'cause I really thought that was it. Like I thought this was gonna be it, and I'll be fine. I'm free from it. But I, I still had all my symptoms. They were just a lot less, but I still couldn't drive.

So I was just like, I didn't know where else to go from there. Like, I felt like I was at a standstill. I looked at all this stuff. I got rid of my Lyme disease. You know, I felt like I fixed my gut 'cause I took, you know, like one probiotic, so I thought I was fine there.

But you know, it was still, still wasn't. And I think it was just one night I got like really, really down about it and I was just on Reddit and I came back [00:28:00] across the vein stuff. I was like, you know what? What does it matter? Like if I don't have it, I don't have it, it's not gonna hurt to get checked.

So I, I read up a lot about it and I have Ehlers-Danlos, so I think some people, it's like their joints mess with them. For some people they have like really stretchy skin and like other problems. For me it's my joints. My labrums tear really easily. Like I have a torn labrum in my left hip right now. So I, I've had a couple MRIs of it. And I dug my MRIs back out and I Googled how to find your iliac veins on MRIs.

Jill Brook: Smart, smart.

Julie: Yeah, so I found mine on my hip MRIs and it from the pictures on Google and from my MRI, it looked, yeah, and it looked how the May-Thurners looked on the Google MRIs.

Jill Brook: Yeah.

Julie: So I was like, oh my gosh. [00:29:00] And then like I got into the blood pooling stuff and like, you know, I looked at pictures of it and like what it actually was. I was like, oh my gosh, I've been dealing with this this whole time. Like that happens to me. And like all the dots were connecting and I just had this aha moment. And again, like, you know, I really thought the Stellate Ganglion Blocks were gonna like, get my POTS away completely.

So when I found this, I was like, you know, it might not help me that much. It, it might just be a little bit and that's it. So I was still kind of like iffy about it. But I found some just random vascular surgeon and I went to him and I was just like I have May-Thurner syndrome. Like my doctor found it on an MRI, I was like, look at it right here.

And he's like, oh, okay. He's like, well, we'll get you an ultrasound and, you know, we'll go from there. So like, okay. You know, we're getting somewhere. So I, I get the ultrasound December, 2024 and it comes back May-Thurners. [00:30:00] But they, they just said my left side was compressed. And I went to the follow-up and he was like, this isn't causing your POTS.

You're very young. It's, you know, you have some, you have some blood pooling in your legs, but again, you're young. Just wear compression socks, you'll be fine. And it was kind of the same, like dismissive tone. You know, you're young, you're fine, you have anxiety. You know, stop coming in my office, go away.

So that was disheartening, but I was like, you know what, no, I'm gonna find somebody else. You know, I've got traction. This is something. I have to explore it more. So I went to another vascular surgeon. Same thing. He, and he even was a, like a big member of like the Dysautonomia clinic in Tennessee.

Like he was one of the big doctors up there. But again, he was so dismissive and was like, I know, you know, you're living in hell, basically. He's like, I [00:31:00] know, I, I've seen multiple patients like you, but you know, the literature on this, there's only a couple cases who've come out of this and, and been fine. And I don't know if you know Dr. Alexis Cutchins, she's pretty big with POTS.

Jill Brook: She just joined our medical advisory board.

Julie: Wow. Yeah. She is big on iliac veins with POTS. And unfortunately she was booked out over a year. So I, I couldn't get in with her, but I read up on her stuff and I was like, you know what? I just don't agree with you. I, you know, this doctor Alexis Cutchins was like, she's saying that this will work. You know, it's worked for so many of her patients. You know, even if it's not all the way, it gives relief. And he was like, well, your ultrasound, it came back. You know, you're fine. It's not that bad. Like it's not causing your POTS.

So that weekend I searched for another surgeon. I was like, there is somebody out there who's like [00:32:00] Alexis Cutchins and does not have a waiting list. I know it. So I went to Reddit again and I went to all those people that I found and I was like asking 'em, I was like, who was your doctor? Who's your surgeon?

And I found one. She had already put her surgeon in her story and I found him online and he was all the way in Michigan. Now I'm in Alabama, so he's a long ways away from me, but I called Monday morning right when they open. His name's Dr. Diego Hernandez. He's fantastic. He's with Bloomfield Vein and Vascular, and he's in Bloomfield, Michigan. So his wife works front desk and she answered right away. I told her what was going on and she said, hold that thought. Let me go get the doctor. So 30 minutes later I'm on the phone with this doctor. I'm like, this is awesome. But he was like you know, I've dealt with plenty of POTS patients. I'm very well versed with the iliac veins and doing this procedure. I've had [00:33:00] like multiple outcomes that were very, very positive. He's like, I haven't had one case where it didn't either get rid of all of it or just a little bit, or like made their life way more manageable. So I was like, okay. I was like, well I'm in Alabama, so how is this gonna work? And he is like, we'll make it work.

So an hour later after that phone call, I was on a televisit with him. This is, by the way, this is February of this year, so 2025. And so I'm on this televisit with him and I, I sent him all my medical records, you know, through email. So he's looking at my scan and the, the hospital that did the ultrasound to begin with, like had the scan on a PDF. So he is actually like able to see the pictures. Immediately he said they did this wrong. He's like, this is not done correctly. It's not measured correctly. I can tell you just by looking at this, that you're way worse than they said. And he said this is a very common thing that he's finding where [00:34:00] people go somewhere else to get ultrasounds that they're not doing them right.

Jill Brook: Because it wasn't done with you standing up or they didn't get the right angle, or do you...

Julie: So it's not the right angle and they're not measuring in the right place. That's kind of what I got from that conversation. And I think Dr. Cutchins touches on it too about how the internal ultrasound is the best way to measure.

Jill Brook: Yeah.

Julie: But he does both. His external ultrasound, he teaches the techs himself and like has them measure a specific spot. I don't, I don't know too many details about it. But he made it very clear there's a very specific way that a lot of schools don't teach techs how to measure that area.

So, I go up to Michigan, I get the ultrasound the day before the surgery, so we don't know how bad I am, but we're just, you know, I guess the ultrasound is bad. Both sides right and left is like almost completely [00:35:00] closed off. My left is 0.03. My right is like 0.05 or something smaller than pencil lead. It is very small. So I get into surgery, it's even worse than what the external ultrasound said. I had four spots of compression. My left side was compressed, and then right above that compression, it was pancaked up against my spine. And my right was the same way. So I had to get four stents. So immediately after surgery I could tell a difference. I still had the POTS and like the high heart rate when I would stand, but I could tell it was way less than what it was.

Jill Brook: Wow. So that sounds like a really desperate act. So you went on Reddit, found a random doctor, and you put yourself in his hands. Am I hearing that he did right by you and you're glad you did it, and that really helped.

Julie: Yes, and he's done multiple POTS patients. You can go on his [00:36:00] website and he has interviews with them and they, they talk about everything. And I did one with him also that will be coming up pretty soon. But he made it very clear that would probably take about eight months for me to see a huge change.

My POTS was gone about two to three months in, so about end of May, early June is when all my POTS symptoms were gone. But I was still having like heart palpitations and high heart rates after I would eat. And that was from an H. pylori infection that I didn't know I had, which now is gone and I don't have that problem anymore. But there was just so much mixed in with everything and you know, everybody's told it's POTS, POTS, POTS. Like if I went to a doctor and I've like told them my stomach, you know, every time I eat, you know, heart rate, they're like, oh, that's just POTS. Don't worry about it. It's just POTS. It's part of POTS. And it's not, you know, there's all these co-infections, you have [00:37:00] all these infections and like you're, you're chronically ill. There's so much going on and it, it adds up and it just keeps getting worse and worse, 'cause you're just told it's POTS, there's nothing you can do. So then it just gets worse and worse and worse.

Jill Brook: So is it correct, so you had been a long distance runner and you had done all of that. Maybe the compressions were not quite as bad at that time, but you had been functioning all of this time with these four quite severe compressions.

Julie: Yeah, he said COVID did something because before COVID, he was seeing about one to two patients a year with this problem, and after it was three to four patients a week this problem. Just when your body's so down and like chronically ill every weak point in your body gets worse. But COVID I think definitely was the root of everything. It kind of just sent me in a downward spiral.

Jill Brook: Wow. And that's interesting that this is yet another vein doctor who's [00:38:00] reporting seeing this because there's a few others, but it's, it's great to kind of have independent observers all saying the same thing.

Julie: So after the surgery in May, I wasn't really having any EBV symptoms, but I still couldn't drive. I was like, why is this like, why can't I drive? I couldn't be in noisy restaurants. I couldn't be around a lot of people chatting and talking, like I would feel very dizzy.

So I got put on Valtrex, but I, I was on that, you know, before tons of times over the years. It didn't do anything. I still can't drive with that. My holistic doctor got me DesBio tinctures. It was like the deactivated virus, like in alcohol and water. And it's homeopathic stuff. So some people don't like that. Some people do. I'm definitely a believer now because I'm able to drive because of it. But I was on that Monolaurin and L-lysine. That combo. And like two weeks on that, I was able to drive again. [00:39:00] And I just came back from the beach. I drove five hours.

Jill Brook: Oh my gosh.

Julie: So it, it's crazy because two months ago I, I couldn't even drive like two feet.

Jill Brook: And now you can go enjoy a day at the beach.

Julie: Yeah.

Jill Brook: Oh my gosh. So I mean, what I'm hearing is that you were in a really, really deep hole with Lyme, Epstein-Barre, COVID, couple surgeries, POTS, and you got yourself out of all of it and you won a lawsuit at the same time.

Julie: Yep. Yeah, that happened a couple months ago and POTS was in there, like, we put that in the lawsuit, which I thought was kind of crazy, just like having that, 'cause I feel like it's not, not talked about ever. And in my lawsuit you know, we put, I had Postural Orthostatic Tachycardia Syndrome and I had bilateral iliac vein compression and I got four stents. Like, it was just [00:40:00] crazy to see all that in there.

Jill Brook: Wow. Wow. Oh my gosh. And so are you, are you this functional all the time? Like you can go to the beach, you can drive, and you feel like you're kind of getting your life back.

Julie: Yes. I mean, there are times where it's scary. Like I'll be standing and it does scare me and I'll get like some anxiety about it. I'm like, is something about to happen? And I kind of like do a mental check of everything. I'm like, is my heart rate fine? Do I feel like I'm gonna pass out or am I just thinking like I'm gonna pass out?

So it's definitely, it's very weird. And it has, it hasn't been easy getting back to normal life because the past four years I've been, you know, sick and not living a normal life. So it has definitely taken a lot to get used to, and I'm still getting used to it.

Jill Brook: [00:41:00] Wow. Well, good job. What you've been through and all the determination it took, and I mean you really showed that, that this was just not anxiety. Oh my gosh, congratulations.

Julie: Thank you.

Jill Brook: It must feel amazing to just have so many things going against you and to just stay diligent and basically, you know, what do they say, like eating an elephant one bite at a time. And eventually you do it.

Julie: Yeah, and I feel like everybody can do it. Like I, I don't want people to be sitting here listening to this and think, I can never be her. I can never do that. You know, I, I'm never gonna be healthy, 'cause there's so many, I know almost everybody that has it, their doctor has told them, you know, you're fine or you'll be like this forever.

There's no cure. And I mean, there's truth to that. There's [00:42:00] not one cure for POTS. It's multiple different things usually that's causing it and you have to like go one by one. But it's possible to heal from. I've met multiple, multiple people that have healed from POTS. It is possible.

Jill Brook: Wow. What a fantastic story. Thank you so much for sharing it with us. Is there any other advice you have for people? Anything else you want them to know?

Julie: Don't give up. I mean, I was diagnosed with so many different things that were wrong. Some were right, but, you know, like POTS was right, but at the same time, it, it's not lifelong like it, it's not forever. You know, your body is just very sick and it's probably multiple, multiple things. You know, I got rid of my Lyme and that was supposed to be my saving grace and get rid of it and it was not. So you can go through big things that you know, you heal your body from [00:43:00] and you might still have it, but that's okay. You know, there's something else going on, so don't give up.

Jill Brook: Beautiful, beautiful. And you are living proof of what can happen when you don't give up and oh my gosh. And I mean, you're still so young and you still have so much life ahead of you. Thank goodness you did all this. I mean. You really, you really took everything into your own hands. Thank you so much for sharing your story and your insights with us. We so appreciate it and I know that everybody listening is really pulling for you. Maybe you can give us another update in a year and let us know, you know, if things you know, keep going your way, but oh my gosh, you are batting a thousand, so congratulations.

Julie: Thank you.

Jill Brook: That's awesome. Okay, everybody, that's all for today. We'll be back again next week, but until then, thank you for listening. Remember, you're not alone. And please join us again soon.