Lyme disease misdiagnosis
Jennifer is both a wife and a mother. She and her husband, John, have been together for 16 years. John has been by her side throughout this entire journey of late stage neurological lyme disease. Jen went misdiagnosed for a decade all while her symptoms and issues continued to gradually worsen to the point where she could no longer work nor care for her most basic needs. Had it not been for a stranger who had a family member with late stage Lyme, she would likely have continued to have been misdiagnosed. It was in July 2014 that she finally diagnosed with this dreadful illness and she has been actively trying a plethora of treatments in hopes of achieving remission and regaining her function and stabilizing her health.
She started a page on Facebook, Corey Lyme Crusaders, as it became her mission to spread accurate information and awareness on this drastically misunderstood illness and in hopes of helping others receive appropriate diagnoses and assist them in obtaining the life saving medical attention they so desperately need and deserve. She has successfully been able to not only promote awareness, but also assist well over 100 other people in getting diagnosed. Jen strives to be well enough to return to her career as an Occupational Therapist as it is a true lifelong passion of hers to help others. She has her M. ED in Occupational Therapy and her Bachelors in Social Work.
Transcript of Episode 4: A Decade of Misdiagnosis – One Woman’s Lyme Journey
Announcer: Welcome to Living with Lyme, the podcast where we educate, advocate, and collaborate about Lyme disease, hear from experts as they share reliable information about how to live with Lyme disease. Here’s your host, nurse practitioner, Cindy Kennedy.
Cindy Kennedy: Welcome to Living with Lyme, and I have the very incredible gift of having Jen Corey here to talk with us-
Jen Corey: Thank you.
Cindy Kennedy: … today. Jen is a great friend of mine. We’ve been, as I say, brought together by a spirochete. Jen and I met because there was an article done in a local paper, and I reached out, and she reached back, and tons of my information has come from her, her knowledge, and unfortunately, her illness, which we do share. Jen has gone out of her way to make me feel comfortable in my own skin, as well as give me a lifetime lesson about what Lyme can do. Hi Jen.
Jen Corey: Hello, my dear. Yeah, it’s-
Cindy Kennedy: Thank you. Thank you for coming and talking.
Jen Corey: You’re most welcome.
Cindy Kennedy: I’d like the audience to know a little bit about you. Tell me about what you were doing while before you got diagnosed.
Jen Corey: Prior to diagnosis, I was working in the field of occupational therapy. I was spending some time as a rehab manager in a skilled nursing facility for several years, and symptoms were coming and going, and life was getting more difficult from the aspect of what the undiagnosed Lyme and coinfections were causing, but I had no idea at that time.
Cindy Kennedy: What were these symptoms? What were the comings and goings?
Jen Corey: Well, the initial symptoms started with quite sudden and unrelenting and unremitting insomnia. It came on so quick, and I, prior to that, was, I had no issues with sleeping most of my entire life. I would say at that time, I tended to initially want to just blame it on the job. The job was too stressful, the hours, the expectations as the manager of the department. It was so quick and easy for me to say this damn job is killing me. Then I thought, oh, well, if it’s not the job, then maybe it’s my hormones, being in my mid-30s at the time and having a younger daughter, I just figured, well, maybe that’s it, and-
Cindy Kennedy: And then what happened?
Jen Corey: Well, from there, I pursued … It’d probably was a good year before I decided with the insomnia to get it checked out. I went that road of seeing several different specialists that might’ve had included the sleep neurologist and various testing and trying to get an idea of what might be causing the insomnia and coming up with no answers. Life was getting brutal.
Now, at that point, it was more than just insomnia. There was other symptoms that were coming on that were pelvic pain that was unrelenting and massive issues that looked like it might’ve been some type of pancreatitis or gallbladder type issues with pains in the abdomen and severe episodes, and nothing was coming back from any of the testing as conclusive.
I just, at a certain point, about three years into various symptoms, I said it’s gotta be the job. I made a decision that this job was, it was time to leave a position of such stress. I quickly gave my notice and moved on into a position where I was responsible for just myself. I was now going to pursue occupational therapy in the home health setting. The stress level was much reduced, the hours were now down to between 40 and 50 hours a week, which was actually not a lot of hours compared to what I was pulling.
Cindy Kennedy: 40 to 50 is not a lot of hours.
Jen Corey: No, that was actually considered not a lot. I was a workaholic. I put my entire self into the job, which was to a fault, but it was me. That’s how I roll.
Cindy Kennedy: You thrive that way, helping people.
Jen Corey: I do.
Cindy Kennedy: That’s why you help me.
Jen Corey: Yes. Absolutely. I mean, I thrive. I enjoy that. I want to.
Cindy Kennedy: You were able to work with this, but still struggling?
Jen Corey: Oh, struggling horrendously. Really, I was. I say horrendously because it was impacting my quality of life, and yet I was still just pushing through. Now, I had assumed that maybe the less stress with the new position was going to result in reduction and symptoms, and I was quite, unfortunately, surprised to see that none of my symptoms were abating. If anything, they were actually worsening, and-
Cindy Kennedy: I remember you told me that something wasn’t right, and then all of a sudden, you had a whole lot of weakness, and that was on one side.
Jen Corey: It was all on the left side. Yup, and I was a person who has spent over 20 years at the gym. I use the gym as a stress management type thing as well as staying physically fit. There was no denying that there was no reason for my weakness in the sense of here I am going to the gym consistently and regularly. There was no lapse in my routine of being at the gym and doing various aerobic classes, weight lifting, running on the side.
Cindy Kennedy: What you’re saying is the Lyme actually penetrated the brain because we know, well, not everyone knows, but there is a blood-brain barrier, and things can get in that are small, other things can’t, but viruses, and certainly a spirochete. At this point, what you’re saying is that the infection had actually made a home in your brain.
Jen Corey: It most definitely did. It-
Cindy Kennedy: So you had neurological consequences.
Jen Corey: Most definitely. There were peripheral neurological, and there were central.
Cindy Kennedy: Peripheral meaning your hands, your feet.
Jen Corey: Yes. I was now experiencing neuropathy in all extremities.
Cindy Kennedy: You couldn’t feel-
Jen Corey: Yeah, the-
Cindy Kennedy: … the usual sensations.
Jen Corey: Yeah, and the funny thing, or, I use the word funny lightly, it was intermittent, and it would fluctuate, so there would be periods of time where it would be affecting me, and then it would suddenly just go away for a little while and return.
It was … None of it had been making any kind of sense from the main perspective of how you look at illness and how things happen, and it was something not just the doctors I was choosing to go and see, but I was not seeking out attention regularly because I had really started to get discouraged by, jeez, each of these visits were coming up with nothing, so, and I was not one to quickly go to the doctor. I, now, was starting to just pull back from going to the doctor. I was keeping quiet about what was going on. I didn’t want to-
Cindy Kennedy: And plugging through.
Jen Corey: Plugging through. I figured, well, we’re still stressed, I guess. I guess this less-stressful job is still impacting me somehow, and it must be something.
Cindy Kennedy: Your regular quality of life was being reduced, and-
Jen Corey: Yes.
Cindy Kennedy: …. you probably weren’t able to exercise the way you used to.
Jen Corey: I was now down to modifying my exercises, and in such situations where I was going, because it was my routine, and I’ll be damned, I’m not going to miss … I need to stay health, or quote-unquote, “healthy,” and so I would go to the gym, and I would modify … For example, if I was doing a step class, I was now modifying it. I was now, instead of two risers on my bench, I was now down to one, and I was not going to do a higher impact on certain aspects of the class. I was now reducing it where I would take a rest break in the middle, or I would leave a half hour after it started because of symptoms now getting worse with the exercise.
Cindy Kennedy: That’s horrible. I-
Jen Corey: It-
Cindy Kennedy: … remember that type of thing happening, and I knew there was something really wrong. I understand, too, that we’ve talked about that there’s some cardiac issues that you’ve had with this.
Jen Corey: Oh, yes.
Cindy Kennedy: Tell us more about that.
Jen Corey: Those started later in the … Because again, we were about a decade of misdiagnosis, and those cardiac manifestations did not begin until probably about the ninth year of the symptoms that were now wreaking havoc on all aspects of my life. What was happening is for someone who had normal low resting heart rate from being physically active and was tolerating exercise, I was now having very elevated heart rate quickly with exercise, and now I was also noticing that it was also occurring at times when I was not exerting myself, and it was like periods of tachycardia with the elevated heart rate, and-
Cindy Kennedy: What numbers are we talking? We know that 60 to just under a hundred is-
Jen Corey: It’s considered norm, yup.
Cindy Kennedy: Right, so now what are we talking about for you?
Jen Corey: Well, now, we’re talking, I’m at the lowest, a hundred, which is not very high.
Cindy Kennedy: That’s resting, almost, where it should be 60, and someone who’s in really good shape, it can be 55.
Jen Corey: Yes. As a matter of fact, yes, I was sometimes as low as 55, which was my norm, and I had a nice, low blood pressure without it being symptomatic. It was from being condition to now being, I might even get to 140, just getting up out of bed or doing something easy, and the shortness of breath that would come on, mild dizziness at times with that, and I’m thinking, jeez, what is going on? I still tried to ignore it. I still tried to just, not try to get answers, because at this point, I’d already been to so many doctors over the several years, and I did not want to look like the crazy person or the hypochondriac, so I was withdrawing from doctors even more.
Cindy Kennedy: Did you … When you were saying you experienced this elevated heart rate, were you feeling palpitations?
Jen Corey: At times, yes, there would be palpitations, and then there were, at times, where it almost feel like it was skipping a beat.
Cindy Kennedy: Just so everyone knows, a palpitation is any time that you are aware that your heart is beating. That is the true diagnosis given to me by a cardiologist, so everybody knows that.
Jen Corey: Typically, you shouldn’t feel it, like you’re-
Cindy Kennedy: You should not.
Jen Corey: … exerting yourself-
Cindy Kennedy: Exactly.
Jen Corey: … and exercising at a high rate.
Cindy Kennedy: Did you have to go on any medication to control that?
Jen Corey: At that point, no, because I was just modifying everything and ignoring and resting as I needed to and staying quiet.
Cindy Kennedy: And still working.
Jen Corey: And still working, yeah. I was still working. It was getting harder. I was managing to get through the work day, and I was wondering why when I got home, even if I had a normal eight-hour day instead of anything above that, why was I now crashing so hard. God forbid, I sat down, I was crashing so hard-
Cindy Kennedy: Meaning-
Jen Corey: I-
Cindy Kennedy: … exhausted.
Jen Corey: Oh, pure exhaustion. I started to develop what I thought was the flu very other day. It was like, I think I have the flu. I was constantly having sore throats, which is another symptom that you may experience with Lyme or even one of the other coinfections, so I’m thinking, oh, it’s sinuses. Oh, it’s gotta be the allergies. I was just blaming it on everything. I don’t have allergies, but I was assuming, oh, maybe I’m developing seasonal allergies, but it was all year. I just kept saying, I don’t know, I’m reducing stress in areas where I can.
Cindy Kennedy: This is so tough. I mean, sometimes people experience a little joint pain, they experience some things, and then sometimes it’s acute, and it’s a fever, and … Those people who have the rash, the bullseye, are fortunate enough that some of their primary care people, maybe in urgent care, maybe in emergency setting because they’re very ill really quickly, understand and know what that probably is and treat them.
Jen Corey: Yes, and that’s probably 10-20% of the people who are experience because only 10-20% are the ones that are going to demonstrate those symptoms and including the bullseye rash, if we call it, if you’re lucky enough to have that rash.
Cindy Kennedy: I know. Is that the saddest thing?
Jen Corey: Yes.
Cindy Kennedy: It’s the saddest thing.
Jen Corey: Yes, and you still had better hope that the doctor prescribes more than two weeks of the antibiotics because that is not efficient. You’re not going to eradicate, even in an early stage.
Cindy Kennedy: Right, right-
Jen Corey: You know, the infection, and-
Cindy Kennedy: … right, right. It’s unfortunate, and even myself as a nurse practitioner, I got treated by arguing with my primary care well into not feeling well for three weeks, sent me to a rheumatologist-
Jen Corey: Sorry.
Cindy Kennedy: … and I said to him, “I’m 75% better,” and I said, “Why?” and he said, “I don’t know,”-
Jen Corey: Yeah, well-
Cindy Kennedy: … and that was the end of that.
Jen Corey: … isn’t that nice?
Cindy Kennedy: It is a sad story.
Jen Corey: Yes.
Cindy Kennedy: Okay, so now we know we can have manifestations all over our body. We can have it in our brain. We can have it in our heart. We can have it in other areas. I’ve heard a bladder.
Jen Corey: Yes.
Cindy Kennedy: What happens in the bladder?
Jen Corey: Well, it will … Actually, inflammation throughout the body, but of course, even in the bladder where you’re now experiencing either interstitial cystitis or maybe not even getting that diagnosis, but you’re now having bladder issues whether you’re having frequent urination or what appears to be a urinary tract infection, but it isn’t or-
Cindy Kennedy: It would be nice if doxycycline was a prescribed medication for bladder infections that people would just treat them because all of a sudden, they might get better, but-
Jen Corey: True.
Cindy Kennedy: … that’s not what we use.
Jen Corey: No.
Cindy Kennedy: We have a lot of things it can present as-
Jen Corey: Most certainly.
Cindy Kennedy: … and an underlying reason that I understand that people don’t get well from Lyme is because the body has additional underlying viruses. Can you tell me about some of those?
Jen Corey: Absolutely. What happens at this particular time, when you’re now past the acute stage, and that can actually occur within three weeks if you’re not treating, it can literally be a disseminated Lyme, which they would consider stage three of the Lyme with it really fast if you’re not knowing of the symptoms.
The immune system will become suppressed by the infection. At this point now, latent viruses that have been dormant in your body, which we all have, every single person as we continue to live past, even in adolescents, you might acquire a virus, and you’re able to dampen it, and it’s never fully gone, but it’s in there in your system, dormant, it’s now becoming reactivated.
Cindy Kennedy: Is this like a mono?
Jen Corey: Absolutely.
Cindy Kennedy: A reactivation of mono?
Jen Corey: Absolutely, and you may not have the diagnosis of mono as a teenager. You’re still going to come into contact with the Epstein–Barr virus, which is mono, and people say, “Well, I’ve never had mono.” No, your body has come into contact with it. It’s remaining in your system, and it’s very dormant. It’s now latent, and it’s now reactivated, so now you’re experiencing all sorts of viral symptoms.
Cindy Kennedy: Do you have … Yes-
Jen Corey: I do.
Cindy Kennedy: … because you said something about the store throat-
Jen Corey: Yes.
Cindy Kennedy: … and I know that when you have this suppressed immune response, and then you have other things coming up, that people will constantly say they have viral feeling. They have the store throat, they have the headaches, they have the swollen glands, and that can come and go.
Jen Corey: Absolutely, and yes. It’s hard to detect because a lot of the doctors will look at your levels and say, “Oh, it’s a past infection,” but what they’re not noticing is those levels are going up and up and up, and it’s not necessarily an acute infection because that’s been in your body, and again, for years, and it’s latent and dormant, and you’re now, with your IGG levels going up and you’re experiencing these symptoms, and the immune system is not putting it back into a nice, dormant-
Cindy Kennedy: Correct, correct.
Jen Corey: … level.
Cindy Kennedy: When you, just so the audience knows, when you first get an infection, your body produces IGM, and once your body is processing that, and you go on to make more long-term antibodies, so you’re going to now delete the IGM, and you’re going to produce IGG.
Jen Corey: Yes.
Cindy Kennedy: That’s why we are testing for an early infection with IGM, and a long past infection with IGG.
Jen Corey: Absolutely.
Cindy Kennedy: This has really been a lot of information, Jen. I know you are a wealth of knowledge, and you’re going to come back, and you’re going tell us some more.
Jen Corey: Absolutely.
Cindy Kennedy: I know that the audience is really going to enjoy you, and I know that you have plenty of followers on your Facebook Page, so I encourage people to go to Corey Lyme Crusaders, and that is a Facebook Page. You can friend her. She’s got over a thousand followers, and she has a lot of published information on that page that can help you all.
I want to thank everyone out there for listening to Living with Lyme.
Jen Corey: Yay.
Cindy Kennedy: This is Cindy Kennedy, I’m signing off, and I do actually have one question for you. Two questions.
Jen Corey: Certainly.
Cindy Kennedy: What ticks you off?
Jen Corey: The fact that this disease is unrecognized and denied by the entire world, thanks to the, can I say that? Thanks to the CDC and Infectious Disease Society not coming to terms.
Cindy Kennedy: Okay, and when you are handed lemons, you make lemonade.
Jen Corey: Most definitely.
Cindy Kennedy: What is your positive out of this?
Jen Corey: I have met some amazing people. I’m looking at one of them right now.
Cindy Kennedy: Thank you so much.
Jen Corey: Oh, it’s the truth, and you’re quite welcome. My circle and my network has grown into a, blossomed into the most compassionate, empathic people I’ve met. There’s a blessing in all of it.
Cindy Kennedy: Isn’t that nice. Thank you again.
Jen Corey: Thank you.
Cindy Kennedy: Alrighty. Take care, come back, and listen to us soon. See you later.
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