Transcription of Anita Roelz for the show Lyme Disease #135
Dr. Lisa: This is Dr. Lisa Belisle, and you are listening to the Dr. Lisa Radio Hour and Podcast, show number 135, “Lyme Disease,” airing for the first time on Sunday, April 13th, 2014. Although healthcare providers have known about Lyme disease for several decades, we continue to be perplexed by this problem. Lyme disease, spread through the bite of a deer tick, has proven to be much more than a simple bullseye rash.
Today, we explore this issue with artists, Anita Roelz and Pam Creamer, who have become patient advocates through their own personal experience with Lyme disease, and this naturopathic physician, Kristen McElveen, who is grappling with the questions of Lyme in her medical practice. This is an interesting show for us because we had hoped to come away with more answers, but at least we’re asking the questions. We hope that in hearing the questions, you might find some information for your own life. Thank you for joining us.
Lyme disease is a problem that doctors and other healthcare providers have been struggling with for years now, and something that we don’t quite understand. We thought, today, it would be helpful to bring a couple of people into the studio who understand Lyme disease in a way that I, as a physician, can’t because I’ve never had this. These are individuals who are very active in the arts community, and one of them is one I know well. Having made the earrings I’m currently wearing, this is Anita Roelz. She is a metal smith and jewelry maker at Circle Stone Designs. Anita has been a caretaker and advocate for a cure of Lyme disease since her partner, Pamela, was diagnosed with Lyme disease 5 years ago. Thanks for coming in, Anita.
Anita: Thanks for having me.
Dr. Lisa: We’re very fortunate to have Pam Creamer also in the studio with us. Pam is a lifelong artist who has created work and painted murals all over the country. Pam was the primary breadwinner in her home for years until her onset of Lyme disease in 2009, which immured her ability to paint and carry on with life as it was before. Pam is under the care of one of the top Lyme doctors in the country, Dr. Richard Horowitz in New York. I know that this took a little bit of effort to get in today, so I really appreciate your being with us as well.
Pamela: Thank you.
Dr. Lisa: This has been a journey for you, 2009. That’s almost 5 years ago now. It’s been an uncertain journey.
Pamela: From the beginning, yeah.
Dr. Lisa: From the beginning.
Pamela: From the beginning, yes.
Dr. Lisa: Lyme disease has gotten a lot of attention. As a primary care doctor, I was always, “If you have a patient who comes in, they’ve been bitten by a tick, you give them antibiotics to make sure they don’t get Lyme disease. If they get a bullseye rash, then you do this.” But, it’s not as simple as that. It’s not as simple as that at all, and we’re finding that the long-term ramifications of Lyme disease are severe and that we don’t really know how to deal with them. Let’s talk about your story, Pam, and how this all started.
Pamela: The first thing that happened to me was my knee went out when I was working. I just shook it off as being the age I am and kept working. The next thing, I had elbow pain and wrist pain, and it all just kind of fell apart within a week of all of it happening. I think my immune system crashed. I went to see an orthopedist for me knee, and then it got worse neurologically. They put me on a high dose of ibuprofen, which gave me an ulcer and which crashed my immune system more. From there, it’s just been a struggle. The year or two or oral treatment, ended up with brain lesions as the infection went to my brain. It attacked my lungs, so I only have 62% capacity of that. So, then doctor to doctor to doctor.
Dr. Lisa: Anita will post on Facebook and actually post pictures of beautiful grandchildren and lovely family members, but often will post pictures of IVs and medical therapy and things that you partake of on an ongoing basis.
Pamela: I was on IV treatment for a year. I’m happy to say that it stopped the progression of my brain lesions. I still have my brain lesions, but they worked. It worked. It was a hard journey for a year, for sure.
Dr. Lisa: So, Anita, what was your experience with this?
Anita: I think that everything that Pam explained about the onset of becoming ill so quickly, and struggling to try to find answers from doctors that were struggling themselves with finding answers, and doing the diagnostics, and trying to quickly discern what was happening. It tumbled very quickly and in an extremely short period of time. As Pam said, it was basically an immune system breakdown.
So, we really … When we look at the terms of how long Pam has been treated for this 5-year period of time, really we probably think that she’s been infected for much longer and that’s the reason for the seriousness of the onset of the infection. I do definitely think that the IV therapy probably kept Pam out of a wheelchair because from a neurological standpoint, the symptoms were becoming very rapidly difficult for her. That was extremely frightening.
I think that it was unfortunate that we felt that we had to leave the state in order to find a specialist that was able to provide the IV antibiotic therapy. I feel it’s unfortunate that doctors are not able to treat the way that they should be able to treat and diagnose the way they should be able to diagnose in the state of Maine. It’s frustrating for patients.
So, I think our journey has been interesting and very educational. We’ve also learned that becoming your own advocate and informing yourself in situations like these are very, very important. So, I think, all in all, the journey has been difficult, but I feel as though we’ve made headway and improvements in Pam’s life had we not been as active in her treatment.
Dr. Lisa: So, the thought is that at some point way before 2009, you were bitten by a tick; probably didn’t even notice it; didn’t notice [inaudible 00:08:01] …
[crosstalk 00:08:01]
Pamela: [Inaudible 00:08:01] the rash.
Dr. Lisa: Never got the rash and never had the flu-like illness. You really don’t know.
Pamela: Right. I had a couple flus, but you think you have the flu and maybe you don’t think anything of it.
Anita: I think that there were … When we look back on symptoms over a 10-year period prior to the onset of the major illness part of it, there were a lot of symptoms that we, as women or people, would shrug off. Pam being a muralist and being as active as we were, hikers, climbing, scaffolding, setting up ladders, working on 12-foot ladders for 8 or 10 hours a day, travelling 2 hours in a car … all of these things. Your legs hurt. Your bottoms of your feet hurt. Your shins hurt. The comments were always, “I think I need new boots.” But, now when we dial it back and look at the symptom list, we realize that there are a whole list of symptoms that were really indicators that there was something wrong, but the whole body system had not crashed. There were just symptomatic indicators.
Had we probably paid a little more attention to the symptomatic indicators, earlier treatment might have prevented that large onset of symptoms back in 2009. But, there’s no way that anyone would’ve diagnosed it or that we really could have been able to say, “Oh, yes, this is Lyme,” because there weren’t enough to connect. I think there’s so many uncertainties, so I think that’s what’s difficult about it.
Pamela: Lyme is more complicated than just Lyme. There’s many, many co-infections that you get with it, so I have 5 other infections that I test positive for that we’re fighting. So, Dr. Horowitz has just wrote a book, and the main thing is that he calls it MSID, which is a multi-chronic infection of many infections that your body’s dealing with. So, he’s treating me for 4 different infections.
Dr. Lisa: There’s often a reaction. Once you start antibiotics, you actually can get a reaction after the antibiotics have started, which can be almost worse than the symptoms that you have initially.
Pamela: Yes. Treatment is very difficult and very aggressive.
Dr. Lisa: I can’t help but put myself in a place of your primary care doctor, whomever you saw in 2009, and think, “You know, if somebody comes in to see me with knee pain, how would I deal with this?” You’re right. I mean, I think probably sending you to see the orthopedic doctor made sense. Even as Anita was saying, you had all of these symptoms, but I don’t even know that as a primary care doctor, I would’ve known to go in the direction of Lyme. That’s what is so confusing to me.
Pamela: His book was really a great book. He talks about checklists of migratory joint pain, sore throat, swollen glands, all of this stuff that just functions through your body daily. It’s a list, and he has a great list for doctors to use to diagnose.
Anita: Yeah, he’s a leading research.
Dr. Lisa: This is Dr. Horowitz you’re talking about?
Pamela: Yeah. Yeah, and his book is … I have his information.
Anita: The name of Dr. Horowitz’s book is Why Can’t I Get Better?: Solving the Mystery of Lyme and Chronic Disease. I think, speaking to you as a primary care physician and speaking to the ability to diagnose Lyme or patients with chronic illnesses, I think that the face of the medical community, in order to acknowledge what’s happening with this kind of systemic disease that has so many co-infections and so many, I would have to say, morphs of symptoms, it’s clearly almost impossible for your average doctor to diagnose this at the onset unless someone has a classic rash symptom or a very classic symptom.
I think that what Lyme patients wish is that there was more acceptance that that course of a 30-day or a 60-day antibiotic immediately would probably prevent something happening in the long-term chronic pathway. But, that would also create a situation where, as you had described, where you would get the additional symptoms or increased symptoms because now you would be treating an active infection. So, I think it would be pretty apparent, quickly, as to what you were dealing with.
Primary care physicians are tasked with trying to find a specialist to help people sort out their issues. Lyme is a chronic, systemic issue that the only specialists that really can treat it is a Lyme aware specialist. So, I feel that if we can’t educate the primary care community about Lyme, that frontline can’t get the patient to the right doctor. So, then there’s doctor 9, 10, 11 doctors later of people who are not aware, or haven’t seen the symptoms, or are unable to treat because their hands are tied by the medical community, the legal community.
Then, you have a patient that ends up costing the medical insurance industry an awful lot more money, and it’s a lifelong illness. Ask Pam. Social Security Disability, now reliant on other ways of making income because she’s unable to function. So, it needs to start from the beginning, and I’m unsure of how we can perpetuate or help to perpetuate that kind of change.
Dr. Lisa: Were there doctors along the way who were more helpful? Were there things that people said to you or the ways that people approached you? What were some of the good things that if you’re talking to a primary care doctor like me, what would have been useful? What has been useful to you?
Anita: I think the primary care community in Pam’s case, and this isn’t indicative of everyone’s case, failed 2 times. It was when she saw a couple of the specialists that were quite removed from diagnosing this, a gastrointestinal doctor and actually an OB/GYN that actually were very sympathetic and a little more knowledgeable and quite a bit more supportive. Yet, they were not doctors that would have treated Lyme or been active in the Lyme community.
I think the other doctors that … specialists that Pam encountered and that I was a fierce advocate for her to see were not able to acknowledge any of what was happening or offer any kind of help. That was the frustrating part. It’s difficult to separate, when you’re so ill, a doctor that seems unwilling to help you and the fact that the legal community and the medical community has created a situation that makes it unable for them to help you. So, it’s not a situation of personal choice. It’s a situation of training, and they’re tasked with what their specialist situation is.
Pamela: The testing’s very inaccurate.
Anita: That’s the key. [Inaudible 00:16:06]
[crosstalk 00:16:06]
Dr. Lisa: That’s one of the things that I was just thinking is I test patients for Lyme all the time, and it doesn’t necessarily come out positive.
Pamela: You could flip a coin. That’s how accurate it is.
Dr. Lisa: Yeah. So, then we’re left with, “Okay. Well, you don’t test positive for this problem, and what are you …”
Pamela: But, is that true?
Dr. Lisa: Right. But, is it true?
Anita: That’s right.
Pamela: That’s the problem. We need research.
Dr. Lisa: Well, okay. So, that’s another piece is …
Pamela: Major research. If you had accurate Lyme testing, then treatment would happen. I mean, even the co-infections, they have inaccurate … I mean, I’ve tested positive for 3 things, but I haven’t tested positive for other stuff and I know I have it.
Anita: It’s the clinical diagnosis situation. Again, the traditional health practitioner doesn’t really look to the clinical diagnosis. It’s when you get into the alternative community. I think they’re trained to look at the whole body. In the way that they’re taught, I think they’re more willing to look at a clinical diagnosis. But, as you said, the testing is totally inaccurate, which ties a practitioner’s hands. I mean, it makes you have to, as a doctor, look outside the realm of possibility.
From an analytical standpoint, I don’t think you’re taught that in school. You’re taught “testing and treatment.” Lyme doesn’t fit within those confines, and I think that’s why we’re looking at the quantity of people that are ill and so chronically ill. It’s not necessarily anyone’s fault, as a whole. It’s an entire medical community that needs to be listening to the alert that’s being sounded in an epidemic way, and that this is going to get worse and worse and worse … and already has. I guess it needs to start with the training, with education and research.
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Dr. Lisa: Well, I appreciate that you understand how tied the hands of the doctors are, and I also appreciate your saying, “When you’re so sick, it’s hard to … It’s hard to comprehend whether somebody it unwilling to help you, or whether they just don’t have the resources to help you, or whether …” It’s just so complicated. You’re right, when you go in to see a doctor, and you’ve gone in to see a doctor for the 5th time, and you don’t have a diagnosis, and you still feel really poorly … That dynamic is so fraught with problems just from the beginning. So, I appreciate that you’re really trying to see it from a bigger perspective. But, at the same time, you have to treat this person in your life who is your partner, who’s the person that you have to care most about. It’s a tricky thing.
Anita: It’s a very tricky thing. It’s difficult. It’s been a very frustrating path. I think that it’s difficult not to be angry. You’re angry at the whole situation, so you’re looking for a place to put the anger. A lot of times, when someone is not willing to treat or not actually willing to open their heart or their mind to the possibility of the situation, that you become very frustrated. At that point, that doctor doesn’t become human to you. That doctor becomes a part of a medical community that basically is pumping out a robot that could … a computer that could diagnosis as opposed to a compassionate human.
So, when you asked the question about the number of doctors that were supportive, that’s where that scale was tipped. There weren’t many doctors that were supportive. Again, I think it comes from them not being educated or their hands being tied, and I understand that.
Dr. Lisa: Well, it is … As you were talking, I’m thinking about the term “gatekeeper,” which is something that was applied to primary care doctors probably about 10, 15 years ago. Instead of like a gatekeeper, the gate just seems closed. We’re sort of … We are tasked with keeping people beyond where we are. It’s a very challenging thing, and I think that Lyme has been called “the new AIDS.”
Pamela: There’s more cases of Lyme disease than there is HIV in the country right now.
Dr. Lisa: We also have … We know that HIV is something that, initially, people died immediately from. Now, they don’t. So, now it becomes a chronic disease; not unlike cancer, not unlike diabetes, not unlike heart disease. But, where does that leave people like you, Pam, who don’t have a good …
Anita: [You don’t have a cure right now 00:23:46].
Pamela: No research. I pray for research.
Anita: I think the issue, in dealing with Pam’s illness as it stands right now, is that we’re looking at a chronically ill patient whose best hopes for a normal life is a new normal. I think that most chronically ill Lyme patients, although they hope for being completely better, really just want to keep a whole host of other chronic illnesses at bay because their immune system has been under such siege.
When Lyme isn’t treated, initially, as quickly as it could be and the manifestations of all of the chronic illness already start to happen, you … There are certain parts of your body system, and you would know as a doctor, that don’t regenerate themselves, that don’t go away. Brain lesions do not go away. Neurological problems stay. You can go through, which Pam will be at some point, neuropsychology in order to learn and create new brain pathways to learning.
She’s very fortunate that she hasn’t lost her creative ability. However, her physical stamina and ability to stand and paint has been taken from her. I know she wishes, every day, that it would come back, and I do see her painting again; not murals, not standing on scaffolding. But, then again, we’re not getting any younger either, so maybe that’s a transition of life as well.
So, I think from a chronic standpoint, we do the best we can to manage to get back to what is a new normal. I think we have many friends, in the Lyme community, that are trying to get out of wheelchairs, that have heart conditions. I think that the general public isn’t aware the depth of how this can systematically age and destroy your body.
Dr. Lisa: Well, I’m very sorry that this has been a struggle. I can’t help but, as a doctor and as a human being, just feel the helplessness and know that there’s so far that we have to go on all of this. But, I also appreciate your taking the time and sharing your story because I think that it’s the stories that, when we get them out there, will be leading to the research and will be leading to doctors changing the way that they practice medicine. The more stories, the more people who are willing to share their experience, I think the better off we’re going to be with all of this. So, I give you credit. This is not an easy lot that you’ve drawn, and you’re both …
Anita: Nope.
Dr. Lisa: I can see it’s been a struggle, but I appreciate your really king of sticking it out and doing what you’ve been doing as artists and, I guess, Lyme disease warriors at this point. We’ve been speaking with Anita Roelz and Pam Creamer about their experience with Lyme disease and about their art. How do people find out about your art?
Anita: I have a website, circlestonedesigns.com. I have a very active Facebook page, Circle Stone Designs. I use social media. Pam actually has her own Etsy site.
Pamela: Mm-hmm (affirmative). I do. I’m sketching from my chair now, which is good … good for the brain.
Anita: The name is …
Pamela: Pamela Creamer Artist.
Anita: So, we’ve maintained the ability to move ourselves forward. So, you’ll find my work here and there, sprinkled up and down the coast. I’m active in doing craft fairs and shows.
Dr. Lisa: I’m very glad that I had the chance to spend time with both of you today. I wish you all the best on your journey, and I thank you for sharing your story.
Pamela: Thank you. Thank you for doing it for the Lyme community.
Anita: Thank you. We really appreciate it. I think that the more doctors and the more people that are aware that early diagnosis and treatment is the key.