From Lyme Disease To Root Cause Advocacy featuring Sylvia Reisman
In this episode, we talk with Sylvia Reisman, whose passion for patient advocacy began in 1998 when she was researching treatment options for her father who was a five-year survivor of stage III pancreatic cancer. In 2006, she became mysteriously ill and ran from doctor to doctor, consulting with a long list of specialists in multiple states before finally being properly diagnosed with Lyme Disease several years later. She became convinced that if she had a knowledgeable professional patient advocate to help her 15 years ago, it would have saved her thousands of dollars, unnecessary suffering, and a timely diagnosis.
Following her Lyme Disease diagnosis, Sylvia became an avid researcher and discovered functional medicine, a treatment approach that goes outside traditional boundaries to identify the root causes of a medical condition. After experiencing the benefits of functional medicine, she felt a sense of obligation to help people with chronic medical conditions like hers.
She started Purity Patient Advocates LLC, a patient advocacy service that replicates the navigation process she learned from her own personal experiences. Please enjoy this engaging interview with a self-made advocate who started her advocacy practice in order to help prevent others with complex medical conditions find answers when the formal health system simply is ineffective.
Transcript
Host
Sylvia Reisman, thank you for being on the Patient Advocacy Now podcast. How you doing today?
Sylvia Reisman
Wonderful. Thank you for inviting me, Jon.
Host
Oh, my pleasure. It's always great to meet new advocates who are out in the field and doing the work and hearing the kind of the stories that come with it. I think what I've learned so far is that everybody has a different path and a journey as to how they became an advocate. And I'm always fascinated to start there. What brought you to this line of work?
Sylvia Reisman
Sure, I'd be happy to share. So originally I served as an advocate for both my parents. My father was a five-year survivor of pancreatic cancer. But what really was the driving force for me was that I unfortunately became extremely ill starting back in 2006 when I was living in the Tampa Bay area. And at the time, because I had not lived there but a few years, my challenge was I
Host
and thank you all for being with us tonight. Thank you.
Sylvia Reisman
didn't really know the doctors in the Tampa Bay area, even though I would still research, along with the fact that I had just a long list of unusual symptoms and I knew, I knew something was horribly wrong because I was always a very athletic, active person and just, and these symptoms were crazy and I started going into my conventional in-network physicians and specialists. And literally, you know, I would prepare for the appointments, I was, you know, running from specialist to specialist.
in the Tampa Bay area and Georgia, Savannah, Atlanta, St. Pete's, Arizona, everywhere. And after about approximately five years and 23 plus physicians later, I self-diagnosed and then confirmed with a highly specialized test panel that I actually brought to my then internal medicine doctor in the Tampa Bay area.
and ask him if he could run the test for me, which he graciously agreed to do. And then when the results came back three weeks later, his office gave me a verbal that you're negative. And at that point, after five years, and I knew this test was, you know, it was an expensive test and I just had a feeling. My gut was saying, you know, so I asked for a hard copy of the test results. To me it looked like I was positive. But I called the...
lab company in California and the owner confirmed that I was indeed positive for Lyme disease.
Host
Oh, wow. So they, they read the results wrong. Your physician then.
Sylvia Reisman
He interpreted the results wrong. And let me just say that, first of all, this physician was very nice. He had always, you know, I think he knew something was wrong. I'd seen him for about a year. And I think what happened, because he'd never run this test before, I brought it to him. I think what happened is that he looked at one of the test results within the panel, and he looked at a line that said negative, but he missed the line, the criteria for the lab company in California.
Host
Thank you.
Sylvia Reisman
was different than the criteria for the CDC. So I think that's how he misinterpreted. And so I did reach out to him. It took me a few weeks to get in touch with him. And of course it shook him up, you know? And I told him, I said, hey, I just want you to know because A, I'm not gonna see you again, because I had moved back to Savannah. And B, because if you have a patient come along in the future that you decide you wanna run this test, that you can reach out to.
Host
and reach.
Sylvia Reisman
the lab company in California, and the owner will be happy to speak to you and interpret the results for you. So that's how, that's, because I thought, how many other people is this happening to? So that's what became my driving force to start my practice.
Host
And was it just a diagnose? What happened after that in terms of getting diagnosed? Were you able to treat the Lyme disease from that point?
Sylvia Reisman
So what happened was I had moved back to Savannah and then I had some other labs run because I had already been talking to, you know, other individuals who had been diagnosed with Lyme in Florida and I ended up going to New York City to see a Lyme specialist. So I took those results along with, you know, a long list of tests. I had a FedEx box that probably weighed 20, 25 pounds.
Host
visual.
Sylvia Reisman
full of my lab results because I wanted him to see everything. And so I started seeing this specialist in New York in 2011, which is when I was formally diagnosed. And he confirmed that along with several other things that typically can come along with Lyme disease. Most people don't just have Lyme disease alone. And seeing that it had gone on for years undiagnosed, you know, it was, of course, a major concern for me. So, yes, that was the first piece.
of the puzzle that was diagnosed correctly. There were other pieces that the specialist in New York uncovered. And then actually beyond that, there were other pieces that he wasn't specialized in. So my journey was over 10 years in total in putting this puzzle together.
Host
Wow. And what are the symptoms that, I'm just curious, because I don't know much about Lyme disease at all, what were the symptoms that kind of made you go, hey, something's wrong here?
Sylvia Reisman
Well, every person's different with Lyme. And so for me, they changed and moved around. So initially, it were flu-like symptoms. And it was in October, which again, it's very warm in Florida in October, but flu-like symptoms. And then I started having neurological issues. Almost anytime I try to sleep day or night, my body would different like parts of my body would jerk.
and prevent me from sleeping. So I literally was a prisoner of war for several years in being unable to sleep day or night. You know, the first six months, I'm trying to look back and think, I remember having night sweats, I remember just feeling horrible, like a truck hit me. But I remember one night I was trying to sleep and I heard this noise outside.
Host
Yeah.
Sylvia Reisman
It was like I was sensitive to light and noise. So just a long, like I said, symptoms changed and moved.
Host
Mm hmm. So what do you specialize in now as an advocate? Because advocacy has a kind of a wide breadth of different things. And I'm sure that your journey and your kind of research led you down a specific service that you do for people or to what is it that you kind of came into your own in with the advocacy space?
Sylvia Reisman
So I have two areas that I'm passionate about. First, of course, is someone who, what I would call a complex case, like me, who there's something wrong and they're running from doctor to doctor and nobody's giving them any answers or maybe they have been given a diagnosis or multiple diagnosis because of the way our fragmented healthcare system is set up. Each specialist is going to focus on their one organ system. So...
Host
Mm-hmm.
Sylvia Reisman
You can walk in and get a diagnosis from a GI, a gastroenterologist, stomach, and you can end up walking into a neurologist and get another diagnosis. So no one's bringing that together. No one's, because the way our system is set up, no one is looking at what the root cause is within our conventional system. So what I've chosen on the side that I'm, first side that I'm passionate about,
is again, we have millions of people and in particular women, although I certainly have helped a man, and some of them are getting a diagnosis like chronic fatigue, fibromyalgia, even in some cases MS, Parkinson's, ALS. And again, if they're depending on their situation, they may be questioning it. I mean, I do encourage second and even third opinions depending on the situation.
Host
and
Sylvia Reisman
the complex group, I developed an in-depth assessment. And that assessment came out, I developed it as a result of what I went through and what I learned, both the mistakes that were made, from again, physicians can't know everything, they're human. And also by following and learning from some of the top functional medicine physicians, although I cannot diagnose, treat, or provide medical advice.
Host
and also long-term.
Sylvia Reisman
It does help me to help my complex clients.
Host
as how to eat more. Okay. What is functional medicine? Since you brought the term up. For the people who aren't familiar with it.
Sylvia Reisman
So functional medicine looks to get at the root cause of your symptoms, what's going on, where many people, of course, including myself, for many years, and I still have conventional physicians. I have an ear, nose, and throat doctor who's conventional, but conventional medicine, you're taught to look at the symptoms and then they might prescribe a medication to help with those symptoms, but that's not getting to what's really causing your symptoms. So...
You could have insomnia and there's a long list of reasons why you might have insomnia. And I'm not against medication, I wanna make that clear. There are times that medication is needed, you know, like for example, blood pressure, if you're diabetic and you can't get your diabetes under control or in some cases it might even be temporary if you might need something temporary to help you sleep until they get the problem worked out. But functional medicine is getting to the root cause, treating that person as a unique individual.
Host
And that's my last image. Well.
Thank you so much.
Sylvia Reisman
so that there are tests that can be run that can look and try to get to that root cause versus the conventional way is not. It's looking at symptom relief.
Host
And who practices functional medicine?
Sylvia Reisman
Physicians in general, it's a physician who has been trained conventionally and attended and graduated from a conventional medical school. And then they decide to go back and get, I say certified, it's a certification in functional medicine. And in most cases or many cases, it's because that physician had something happen either to themselves or someone in their family. Just like I told my story, they have a story.
Host
Yes.
Host
And then next.
Host
Thank you.
Sylvia Reisman
And they realized that the conventional system failed them or their loved ones. And they want to help other people. They know that the root cause is, that's how you diagnose someone correctly and help them.
Host
Thank you.
Host
And is that what you see as the one of the biggest issues for patients seeing physicians in the conventional healthcare space today in the system that we have?
Sylvia Reisman
I see it as a major issue because again, when we're looking at millions of people who are walking around chronically ill, many of them are on medications, and the question is how many of these people have not truly been diagnosed properly and got to the root cause of their problem? If we have a system set up that's strictly looking to look at...
Host
Thank you.
Host
Thank you guys.
Sylvia Reisman
what are your symptoms? And then in some cases, there are conditions they're diagnosed with, but the question is, is that really, is that really a correct diagnosis for many of them? And so it's a problem in that regard. And the time constraints is a huge issue as well, in an appointment.
Host
Thank you.
Host
So, it's a problem that we're going through.
Host
The time, you mean the amount of time that a doctor is or a physician is essentially allowed to see you for? And the potential system is...
Sylvia Reisman
Right, within the conventional system, especially with the hospital health care system. You know, unfortunately, I'm on LinkedIn and I follow a lot of pharmacists, nurses, legal nurses, and physicians. Yeah, and the talk is, you know, so many of the nurses and the physicians are extremely unhappy. We've had many of the major hospital health care systems that have been purchased by large private equity firms.
Host
Thank you.
Sylvia Reisman
And so what's happening is these physicians and nurses are being, I mean, I empathize with their situation. They in many cases, you know, are being told, you must see an unrealistic number of patients in a day. You know, if you're told you must see 60 patients in a day, what does that translate to as far as quality patient care? And how does that make that physician feel who went to medical school to help patients and they're not able to?
Host
Thank you.
Sylvia Reisman
horrible situation. And many of them can't even go to what we call in the hospital system corporate compliance where you could go and say, hey, I see something unethical going on because they fear there could be retaliation. So it's really a bad situation.
Host
Thank you.
Host
And so I would assume that functional medicine takes more time to do that deep dive and do those tests. And so that's why it's not practiced more in the system we have today in the United States. Is that what you're kind of getting at?
Sylvia Reisman
Well, I think there's a couple of things I want to touch on. One is that functional medicine, for the most part, is out of network. And that's where I think a lot of people have a tough time with saying, hey, I have an insurance plan. Why should I go out of network? That's expensive. And here's the thing. People have to understand that number one, we as consumers, we are not the customer of the insurance company. We're not.
Host
There's a thing.
Sylvia Reisman
It's the doctors who sign the contracts with the insurance company and even the doctors who sign the contracts to be an in-network provider are they're unhappy because they're dealing with reimbursement issues. They're very unhappy. So I think that that's the first thing people need to understand and that when you are complex, that you really have to have an open mind at this point to realize that you are probably going to go need to go outside of your health insurance plan to get
quality care that you need, functional medicine, they do spend more time with the patients. Part of the reason why many of them are out of network is because they would be micromanaged by the insurance company. They wouldn't be able to help their patients as they feel they need to.
Host
Shit.
Host
Got it. Do you see typical, you know, when you call it complex cases, do you see the same illnesses or disorders or something that keep popping up again and again, or do you find that this kind of leads you down weird winding paths?
Sylvia Reisman
I think it's all different paths. I just helped someone recently. I actually met her on LinkedIn and she had been misdiagnosed for at least a year and been suffering and has a very active person. And she was very open. She let me share her story on LinkedIn and said, please share it because I want people to know. But she actually turned out she had Lyme disease.
Host
Thank you.
Sylvia Reisman
She had been misdiagnosed with Ramsey Hunt syndrome, which is a neurological condition that was on the side of her face. Shingles, it actually worked her way into her gums, where she had gum grafting surgery about a month ago. So, but I do see, you know, I've helped individuals who had pre-existing brain injury, who were on medication for years, and then all of a sudden they start having issues. So yeah, it's really a wide array.
Host
Thank you.
Host
Thank you.
Sylvia Reisman
complex.
Host
Yeah, that makes sense. I mean, I guess that's why there's a whole field because you have to kind of do the detective work. There's a bit of a long shot, but did you ever see the show House MD? Is that kind of what functional medicine is? It's someone who kind of plays that detective role?
Sylvia Reisman
Exactly.
Sylvia Reisman
Oh yeah. Ha ha ha.
Sylvia Reisman
Well, some functional medicine doctors have used that term, you know, they're the detective. I mean, I actually have used that term for myself, but I'm not a physician and I can't diagnose or treat. I would say, you know, we look at House, it was a major medical university, which gosh, if every complex case could have access to that, plus the whole, you know, mentality of them digging, to me that was somewhat, they did not tout themselves in House as being functional medicine.
Host
Mm-hmm.
Host
Amazing, man.
Host
I mean...
Sylvia Reisman
But when you look at they were really trying to get to the root cause, that's what it appeared to be, you know, a whole team of people. And that's really what somebody complex needs. You know, when you're just going into these individual specialist offices, the doctors aren't talking to each other. And that's part of the problem in the conventional system. They're not communicating with each other. So who's putting together that puzzle for that patient?
Host
When you look at it, you'll see the lines that are like the first lines. And it's true. But it's not true. It's really not true. It's not true.
Sylvia Reisman
And that's why my in-depth assessment, it looks to identify areas that have been overlooked due to the fact that we have time constraints, like I mentioned earlier, with appointments. And on top of that, many of the conventional physicians are not trained on how to diagnose a complex illness. And then we also have testing issues, for example, with Lyme disease. The conventional testing for Lyme disease
Host
and
Sylvia Reisman
50% falls negative. So that means if you thought you had Lyme disease right now and you were able to get a doctor to run the tests for you and you came back negative, that doesn't mean you're negative. But many patients will believe they're negative and walk out. And then the rest of their life, they end up chronically ill.
Host
Thank you.
Host
Well...
Host
That's fascinating.
Host
Oh my God, I just lost my train of thought because you got. I'm going to mark the clip here. Let me give me a second. Let me see. Do do do.
Sylvia Reisman
Hahaha!
Host
The idea of being misdiagnosed is such a horror story. God, I had a great question too.
Sylvia Reisman
Give yourself a minute.
Sylvia Reisman
Take your time. Was it something to do with misdiagnosis or testing?
Host
It was something about diagnostics.
Host
lost it shoot. It'll probably come back as we talk about other things. OK, I'm going to market again.
Sylvia Reisman
I want you to have an acoustic bag. Yeah. Okay.
Host
What's the landscape like as an advocate navigating through the hospital system now? Are you networking with other advocates? Kind of where do you see this new kind of emerging field that's still in its infancy kind of evolving?
Sylvia Reisman
Great question, Jon. So first of all, I wanna clarify right now that with my practice, my focus is on outpatient navigation, meaning to the physician's office. So, but I will say that I do network with other advocates for sure in other states because I can help people virtually and many other advocates can as well. And there are many of us that have different, you know, different specialties and areas of expertise. So, but I will say that
just from what I know from what I mentioned earlier from you know having conversations with physicians and pharmacists and nurses on LinkedIn, the landscape is ugly at the hospital level. That's why part of what I do is I want to prevent my clients from ending up in the hospital and we can't totally prevent that from happening but if you have a good physician
Host
Thank you.
Sylvia Reisman
primary care physician from the get-go, and you have a good advocate who's there to help you prepare for the appointments, attend, whether it's virtually telehealth or in person, and they know what questions to ask, and based on that client's goals, then a good advocate can help prevent that from happening if the client is managed correctly. And that's the other side of what I do, is working with seniors, or people who live alone, who...
They're not happy with their current patient experience. Many people are uncomfortable, intimidated, maybe come from the old school, you don't ask questions. Just, if you're an introvert, it would be very hard to be able to ask questions. I mean, there's various reasons, or they might have an adult child in another state and that adult child may be concerned about their loved one.
Host
Thank you.
Sylvia Reisman
or the adult child is living locally and they're just too busy with life, but they want somebody to help them with their loved one. Navigate to the doctor's office and help keep them, you know, for example, from being overprescribed, which is a common issue.
Host
Yeah.
Yeah. I mean, especially if you think of, you know, seeing 60 patients in a day, you have a very narrow window. So to be able to authoritatively kind of go in and say, I want to talk about this, and this, and I don't want to miss anything. And I just, I want to make sure we address different things. Yeah. You have to have a pretty organized, uh, strategy when going to see your physician, it sounds like.
Sylvia Reisman
Absolutely. I did it for years before I became an advocate. So I know, I mean I basically, you know, put together, I call it, you need to compare it to preparing for a business meeting, you know, and even when I started seeing the specialist in New York, I mean I would prepare for at least two hours before I had an appointment with him, whether it was on the phone or if I flew to New York. And he always had a lot of homework for me, so we joke with each other, but
It's really if somebody's really wanting to regain their quality of life, because this is what happens, it's usually people who are on the side of the, I say the complex side, someone who may have been extremely active, athletic, and all of a sudden their lives just overnight has changed. Individuals who've lost their quality of life and they want it back, I can attest that I would do anything to get my quality of life back.
as long as I had the right physician. And if I had known somebody like me 15 plus years ago, I would have been all over it.
Host
Yeah, absolutely. I actually, I have a question for you. So we've talked about complex case. Another word I think you've used in the past that I remember hearing was invisibly ill. What is, how would you even define that? So how do you know? Cause a lot of people are saying, well, I just feel flu like symptoms. So what makes a case a complex case?
Sylvia Reisman
Great question, Jon. So when we talk about invisibly ill, then again, we have millions of people who are invisibly ill. There's a wide range. It could be someone who, again, let's say, I mentioned earlier, chronic fatigue. Does someone with chronic fatigue look sick? No. They might even get compliments on how great they look. Does someone with fibro-algae look sick? No. Does someone with lupus look sick? Probably not. So we have a wide array of
illnesses, you know, that individuals, you know, and again, that's a whole other story I could get on for those people who are invisibly ill, who are out there advocating so that people understand that they are really ill and that it affects them emotionally, physically, emotionally, you know, a gamut. It affects the relationships, everything. So, yeah, it's a wide array.
Host
I guess my question, I'll rephrase it a little. I think that was a good answer, but I didn't quite ask it the way I wanted to. Let's say you're suffering. How can you know that you should be exploring this concept of hey, maybe there's something deeper going?
Sylvia Reisman
Okay.
Sylvia Reisman
Okay, so yeah, if you know, because your gut's telling you, you know, you know your body better than anybody else. You know something's not right and you know, your life's changed and you know, and you're starting out going to your, you know, in network primary care and like I said, you end up being referred on. Here's the red flags though. Red flags as far as when you go, if you're not treated seriously,
If you're able to convey specifically your symptoms, how long they've been going on, how your quality of life has changed, rate yourself, one to 10, 10 being the worst on all these different areas, and then you're going in and sitting down and talking to your doctor and having these conversations, and if they're not taking you seriously, if they are saying, hey, it's just stress, it's just anxiety, it's all in your head.
Host
Thank you.
Host
Thank you so much.
Sylvia Reisman
The bells, the red flags should be going off that you need to fire somebody. And you need to think about retaining a patient, a knowledgeable patient advocate. Because if you're sick and you're not feeling well and you're invisibly ill, whether visibly or not, you're probably not up to being your own advocate, even though I actually conduct presentations on how to be your own advocate. But...
You have to look and realize that, hey, I'm too sick. I need somebody to help me navigate this system.
Host
Yeah, absolutely. You mentioned Lyme disease a couple times and you also kind of in passing said you were on LinkedIn. I noticed some people biting into limes. Is that an awareness kind of campaign or what's going on? I wish I paid more attention, but while I have you just in it might just be another kind of millennial kind of fun weird thing they're doing. But I thought I'd ask if there is any relation.
Sylvia Reisman
Hahaha!
Sylvia Reisman
Sure, sure. So yes, I absolutely know about it. So back in 2015, I was with a group of individuals. All of us had been diagnosed with Lyme and or our family members had. And we decided that we wanted to collaborate on executing a global social media campaign to provide the facts to the public on Lyme disease because there is a lot of
Host
Thanks for watching!
Host
you
Sylvia Reisman
misinformation. And so a lot of people don't know that. So we were on Instagram, Twitter, Facebook, and we, back in 2015, we started and we didn't know what would happen. We started I think in March of 2015 and it was the most exciting campaign I have ever been involved in. I was on Twitter
Host
Mm-hmm.
Host
Thank you.
Host
in media, and
Sylvia Reisman
public figures. And so basically it was kind of like the ice bucket challenge where you would take a bite out of a lime and you'd state three facts and then you'd challenge three people or organizations. So we did this for about three or four years. And May is Lime Disease Awareness Month. So I brought the Lime Disease Challenge to LinkedIn for the month of May to provide awareness. But at the same time, that's how I mentioned earlier the woman who connected with me. So.
Host
We need to do this.
Sylvia Reisman
A lot of, even I've had a physician in Canada, who I've zoomed with, she's an engineer and a nephrologist, which is a kidney specialist. She reached out to me, she and I have spoken many times, but she was like, wow, Sylvia, you are a wealth of information. So her daughter was bitten by something, and so it made her really think, like I need to make sure that my daughter was not bitten by a tick and that she doesn't have lye.
Host
Reach out to me.
Host
I remember seeing something on like a TikTok of someone treating Lyme disease with bee stings. Was that, is that a form of treatment that you've ever heard of?
Sylvia Reisman
I've heard of it, but I don't. Again, I can't diagnose or treat, but I don't support that personally. I have heard of it. I think it's very, I would be.
Host
Okay.
Host
It shows you like what kind of fast array of knowledge is out there is like some people are treating it with things where you're like, oh, that sounds a little risky, you know.
Sylvia Reisman
I've heard of that and you know, and the sad part is see because a lot of people do become very desperate because they've been sick a long time and I do, I'm very empathetic about this. But you know, there might be some, I say doctors, I don't know if it's naturopathic or I don't want to say because I don't know. But I do know they're hearing some of this stuff from somewhere. But I would be concerned about something like that. Yeah.
Host
Mm-hmm.
Host
Okay, so the answer is get a qualified individual that you trust who has a good track record to get a course that actually has some evidence base to it and that you can believe in, right? Okay.
Sylvia Reisman
Yes. Yes, absolutely.
Sylvia Reisman
Right, and again, that's part of my service. If someone comes to me and they end up taking my in-depth assessment, and then I create a plan of action from that, as well as provide them with the findings from the assessment and their detailed timeline, their history, they have the choice that they can either continue on with me, where I can help them research for physicians, and like I said, attend the appointments virtually or in person.
Host
Yes. Right here. Yeah. Hang on.
Host
Thank you.
Sylvia Reisman
Or they can take that information out on their own if they want to search on their own. And then if they can't and they just realize they need more help, then they can come back to me.
Host
Thank you for your attention.
Host
No.
Yeah, it makes perfect sense. If someone doesn't want to work with you directly, is the best place to find you on LinkedIn or to your website? What's the best way for them to reach out?
Sylvia Reisman
There's a number of ways. One would be LinkedIn, which I'm on Sylvia Reisman. And they can also, my website is puritypatientadvocateswithanSontheEnd.com. I'm also on Facebook, which is puritypatientadvocatesllc on Facebook. I'm on Instagram, which is at puritypatientadvocateswithanSontheEnd.
Host
Okay, lots of options, kind of every, most of the major social media platforms covered and the website for the old school web surfers, it's puritypatientadvocates.com. Did I get that right? Okay, well Sylvia Reisman, thank you so much again for being here. I appreciate sharing all the wisdom and keep fighting the good fight and helping people.
Sylvia Reisman
Thank you, Jon. Thank you so much for having me.
