Heal Podcast with Lyme 360

E22: LymeDisease.Org with Lorraine Johnson

October 01, 2020 Mimi MacLean Episode 22
Heal Podcast with Lyme 360
E22: LymeDisease.Org with Lorraine Johnson
Chapters
Heal Podcast with Lyme 360
E22: LymeDisease.Org with Lorraine Johnson
Oct 01, 2020 Episode 22
Mimi MacLean

Lorraine Johnson is the CEO and president of Lymedisease.org which is a non for profit organization that was founded in 1989, making it one of the oldest line organizations in the nation. It is also the largest and most trusted Lyme disease patient communication network, known for its extensive blogs and the Lyme Times, which is published quarterly. Lymedisease.org has an extensive grassroots reach and community and harnesses the power of patients using science-based advocacy to create the change necessary to improve patient care. For over 10 years have been involved in patient-led Big Data research efforts conducting large-scale patient surveys that engage thousands of patients, and are published in peer-reviewed journals. In 2015, Lymedisease.org launched in my Lyme data patient registry and research platform, my Lyme data has enrolled over 13,000 patients to date. Lorraine Johnson, she's a JD MBA and the Chief Executive Officer of Lymedisease.org, and the principal investigator of MyLymedata.com. She's published over 40 peer-reviewed articles on Lyme disease and patient-centered healthcare, including three big data patient-driven research studies on which she served as a principal investigator. She has served on five federal advisory committees related to big data, patient-centered research, and patient registries. She's the co-author of Lyme Disease Guidelines of the International Lyme and Associated Disease Society. 

Show Notes Transcript

Lorraine Johnson is the CEO and president of Lymedisease.org which is a non for profit organization that was founded in 1989, making it one of the oldest line organizations in the nation. It is also the largest and most trusted Lyme disease patient communication network, known for its extensive blogs and the Lyme Times, which is published quarterly. Lymedisease.org has an extensive grassroots reach and community and harnesses the power of patients using science-based advocacy to create the change necessary to improve patient care. For over 10 years have been involved in patient-led Big Data research efforts conducting large-scale patient surveys that engage thousands of patients, and are published in peer-reviewed journals. In 2015, Lymedisease.org launched in my Lyme data patient registry and research platform, my Lyme data has enrolled over 13,000 patients to date. Lorraine Johnson, she's a JD MBA and the Chief Executive Officer of Lymedisease.org, and the principal investigator of MyLymedata.com. She's published over 40 peer-reviewed articles on Lyme disease and patient-centered healthcare, including three big data patient-driven research studies on which she served as a principal investigator. She has served on five federal advisory committees related to big data, patient-centered research, and patient registries. She's the co-author of Lyme Disease Guidelines of the International Lyme and Associated Disease Society. 

Mimi MacLean :

Welcome to the heal podcast for all things related to Lyme disease and other chronic illnesses. I'm Mimi MacLean, mom of five, founder of Lyme 360, and a Lyme warrior. Tune in each week to hear from doctors, health practitioners and experts to hear about their treatments, struggles and triumphs to help you on your healing journey. I'm here to heal with you. Hi, welcome back to the heal podcast. This is Mimi, and today we have on Lorraine Johnson. She's the CEO and president of Lymedisease.org which is a non for profit organization that was founded in 1989, making it one of the oldest line organizations in the nation. It is also the largest and most trusted Lyme disease patient communication network, known for its extensive blogs and the Lyme Times, which is published quarterly. Lymedisease.org has an extensive grassroots reach and community and harnesses the power of patients using science based advocacy to create the change necessary to improve patient care. For over 10 years has been involved in patient led Big Data research efforts conducting large scale patient surveys that engage thousands of patients, and are published in peer reviewed journals. In 2015, Lymedisease.org, launched in my Lyme data patient registry and research platform, my Lyme data has enrolled over 13,000 patients to date. Lorraine Johnson, she's a JD MBA and the Chief Executive Officer of Lymedisease.org, and the principal investigator of MyLymedata.com. She's published over 40 peer reviewed articles on Lyme disease and patient centered healthcare, including three big data patient driven research studies on which she served as a principal investigator. She has served on five federal advisory committees related to big data, patient centered research and patient registries. She's the co author of Lyme disease Guidelines of the International Lyme and associated disease society. Thank you so much, Lorraine, for coming on today. So Lorraine, thank you so much for coming on today. I really appreciate your time and the information you're going to provide for us. I'm delighted to be here. Yeah, thank you so much. I would love to start out by just asking how you got involved with Lyme disease. org.

Lorraine Johnson :

I got involved with Lyme disease.org, when I was diagnosed, actually, really shortly after I was diagnosed, I reached out to some people who are on the internet. And they contacted me and said, You need to get involved with this group. And I went and met with them for their first board meeting and was really impressed by the board by the people who were there. We had a number of physicians or pharmacists, the number of patients it was just a really great grassroots organization up in Northern California at the time. And since then, it's expanded and become nationally, very well known. But it was at that time, it was one of the first organizations formed 1989. And it was the first communications organization form. So Phyllis Mervine, who is a founder started off by putting together the Lyme Times. And she did that by putting together like a one sheet communication on Lyme disease. And then she'd fold it in half. And she'd mail it out to everybody she knew. And so over 30 years that grew. And you know, to the point where we're now we have about 4 million unique visitors to our website a year. And we're a really well trusted communications source for patients and for physicians and for researchers.

Mimi MacLean :

Oh, that's great. So your your main mission? Is it just education are you doing other things?

Lorraine Johnson :

We do a number of things, they're all involved with putting the patient at the center. So we like to think that we're powered by patients. So a lot of communications with patients. And then we found as we were doing that, that we were really very effective at advocacy, because we could reach out to this extraordinary number of patients and get responses back very quickly to influence legislative action. So an example of that would be the tick borne disease Working Group, which is a federal group that was established under the 21st Century Cures Act. We were able to go out and get 14,000 people over a weekend to contact their legislators to help enact that legislation. So there were a lot of people who worked on it, but our role was going out to the patients and saying, Come on, let's let's join in and push and support this. So we helped get that legislation passed. And we saw that we had this ability to communicate with people, large numbers of people, you know, 10s of thousands of people very quickly and started doing survey work. So we were nobody was asking Lyme patience, anything at that time. You know, people were saying this was true. And that was true, but they had no data. So we started gathering data from patients. And that became our large scale survey work, which eventually became our patient registry, my Lyme data. So, you know, we you, what we do is we communicate with large numbers of patients, we communicate to them the information that they need to know about Lyme disease. And then we help advocate for change, healthcare policy change, using their voices, amplifying their voices, and then pooling their data together in my Lyme data is a research project to help gather information so that when people say, something like, oh, co infections are rare, we can say, well, they're not rare in patients with persistent Lyme disease. Actually, the majority of patients with persistent Lyme disease have coinfections. But until you start gathering that data, you really have nothing to say, There's an old saying that goes in God, we trust all others bring data. And that's sort of the key for health care policy changes, you really have to have data to support change. So we're gathering data through my Lyme data to help support change.

Mimi MacLean :

That's great. That's great. Now, is that the same working group that met like, was it last week? It is, and what is their role? What are they doing?

Lorraine Johnson :

So this is their second session. So what they're doing is this is the first time that patients have really had a voice in any of the policy decisions that are being made. And what they're doing is they've got subcommittees that consist of patients and researchers, and government employees. And they'll take on a topic. And as they do that, they will come up with recommendations for Congress. So they'll say, we've looked at all of this information. And here's some recommendations. So I was on one of the groups that I was on, was the education and access to care sub committee. And that committee, we came out with a recommendation for Congress, the three components of this recommendation that's going to Congress are that the science in Lyme disease is unsettled. And if you think about that, that has been disputed. For a long time, people have been saying, No, the science is settled, we know exactly what it is, nothing works. And you should, you know, be good soldiers and get on with your lives and not bother anybody about medical treatment, even though you're really ill. And the second one was that there are divergent viewpoints on how to treat and diagnose Lyme disease. That's a really important point, because for a long time, the infectious diseases Society of America who said there's one viewpoint, it's our viewpoint, and the viewpoint of the International Lyme and associated diseases, society has not even been mentioned, it's not even brought up in the idsa guidelines, for example. So it's really important that people recognize that there are two standards of care. And then the third one is for shared medical decision making, which is critical, because the patient wants to be able to say, I'm not like the average in those treatment trials, I'm actually a different unique individual person. And here are my symptoms. And here's how my course of disease has gone. And here's how treatment has affected me, so that they can work with a doctor for individualized care.

Mimi MacLean :

Mm hmm. Now, why do you think it is a disease that is not recognized by the government not recognized by insurance companies? Why is that like, why is it taken so long for them to even accept it or even look into trying to figure it out?

Lorraine Johnson :

There's a number of reasons historically, I think that it has been an underfunded disease, or what you'd call a research disadvantage disease. Pharmaceutical companies haven't been very interested in Lyme disease. It's treated with generic antibiotics. So that's not really seen as a big profit center for them. So you haven't had the head pharma leaning in. And the government hasn't been very interested because I think partially they didn't recognize how large a problem it was. Remember, it wasn't until 2013 that they figured out oh my gosh, it's not 30,000 cases a year is 300,000 cases a year. So they thought it was a little problem, and it was instead a big problem. And then I think the IDSA has a lot of influence with the government. You know, a lot of IDSA people work for the government, they are the infectious disease specialist, so I think they have a lot of sway. And you know, the IDSA doesn't primarily treat people. They don't treat people with persistent Lyme disease. Let me be very specific about that. What they do primarily in Lyme disease, is they do research and that may be in vaccine trials, or in epidemiology, but they're not primarily involved with treating patients with persistent Lyme disease. So if something goes wrong with a patient, if they give them 30 days of antibiotics, and they leave that doctor's office, they never know that the patient didn't get well, because that patient goes off and finds another doctor.

Mimi MacLean :

Mm hmm.

Lorraine Johnson :

You know, and generally they they go over to someone who treats under the guidelines of the International Lyme Associated Diseases Society.

Mimi MacLean :

Right, what's like, from my experience, you know, after I did the initial antibiotics, and it didn't work, and I finally, you know, bounced around to so many things, but I wanted to go into an ILAD Doctor who put a port in, and I was doing, you know, daily, multiple times a day antibiotics through my port, which is costing me 1500 dollars a week in the antibiotics. But my IGENEX test showed that I had six different like, it was clear that I had Lyme, like by even CDC standards, and my insurance company still wouldn't cover it. It's still out of pocket. It's just crazy. When I tell people like it is disease that is not coverage Magnanti, like what like when I have friends call me like, I think I have Lyme, I just got diagnosed. Now what and I tell them, this is where you're in for they're like, what? Like, they just can't believe it. They're just like, I'm like, you have no idea like, what road you're going down? And how it's just you want to hit your head against the wall, because no one, everyone thinks you're crazy. And no one believes it. And in your out of pocket. Right?

Lorraine Johnson :

Right, exactly. And you have to figure that the primary motivation for insurance companies is they make their profits by selling insurance, and then keeping their costs down. So they believe that by not treating the underlying cause of Lyme disease, that they're saving money, but they're actually not saving money, because these patients are on a lot of different medications, then to deal with symptoms. You know, something like thyroid medication or sleep medication, they're on antidepressants are on a lot of different medications that they may be on for life. And all of those medications have side effects. But traditionally, insurance companies will follow the lead of a dominant medical specialty society like the idsa. And if the idsa says don't treat, they'll say, we're not going to treat that'll save cost. So it's a short sighted view. But I think I don't think anybody has really put together the data on how much the costs are for all of these other types of treatments that patients have. We're just beginning to do that. I mean, you're beginning to see some, you know, out of Johns Hopkins, they did an insurance study that showed that patients with persistent Lyme disease, their expenditures were substantially higher. And we've done a lot of work on it as well. And our quality of life surveys and our access to care surveys are now in my Lyme data about what the cost is. So for example, people think that there isn't a substantial costs. And yet, for example, just to take one area, we ask patients, you know, pain is one of the symptoms that a lot of patients report. So we ask patients, well, how many of them were taking pain medication, over the counter, and then also prescription, and, you know, it was a much larger percentage than you see in the general population. And that was clearly to treat their symptoms of pain. And the same thing with thyroid medication, the same thing with taking sleeping pills. So, you know, a lot of the symptoms are being addressed at a cost to the insurance company and visits that the insurance companies absorbing, but they haven't really put the full picture together yet.

Mimi MacLean :

Do you think if they ever will, and if so, when would you think that's gonna happen?

Lorraine Johnson :

I think they will. I think it's a matter of putting together the information in a way that the insurance company is going to understand and obtaining some credibility in the government health care policy arena. So I think that the tick borne disease working group is really important for that purpose, among others, it does have a member of the idsa on the panel, Dr. Eugene Shapiro, who's actually been quite dismissive of patients, but the fact that he's sitting in the same room with patients is important.

Mimi MacLean :

Mm hmm. And then also, was it the senator that passed away last year? Unfortunately, the female was she said it her Congresswoman.

Lorraine Johnson :

Oh, yeah.

Mimi MacLean :

I feel like that brought attention all of a sudden, because, you know, here's a woman who was in government and she passed away from some tick disease. It wasn't Lyme it was some obscure one I hadn't even heard of, but she passed away. So I felt like that all of a sudden started getting people a little bit more aware, from your data from your my Lyme Data information, can you tell like what is working best, like what treatment is working best for people?

Lorraine Johnson :

That is something that we are working on. So we do gather information about how long it took to get a diagnosis, what stage of disease were they diagnosed that? How long have they been treated? What were their treatments, and a lot of that information we have on our website. So for example, we asked patients, which alternative medications they were trying, and whether they were effective or not, and then what their side effect profile was. And we put that up on our website as an interactive chart. So people can look up, for example, they can look up herbal supplements, I think over 60% of people are taking those. And then they can see well, how many people say that they're effective? And what are the side effects for those. So we have that type of information up. Now we're currently working on a study that's about the use of antibiotics, what is the role of antibiotics in terms of patients getting well, pulling together that type of data? And we're also looking at the question of now, what do we mean when we say a patient is well?

Mimi MacLean :

That was my next question. I was gonna ask you.

Lorraine Johnson :

Yeah, so 75% becomes the new normal. And yeah, and you just simply adjust or are patients capable of actually becoming well, and the My Lyme data registry has in it I mean, kind of, remarkably, because we haven't actually tried to enroll people in this purpose. Very important. We have about 650 well patients. So we have 13,000 people in the registry, which is, you know, so it's enormous, right. And so we've got over 5 million data points. And we're 650 well patients. I don't think anybody's had a study that's looked at well patients, and what they did, and what worked for them, and what it meant to them, when they said they were well, how well were they, you know, so that type of information becomes really valuable. Because if you look at some of the narrative, people are saying, Well, people are sick, we know they're sick, but they can't get better, and nobody gets better and nothing works.But that's not what we're seeing in the registry, we're seeing that there is a subgroup of people who do get better. And when they get better, a lot of them identify as being well, in the same sort of way that we would identify well in the general population. So these are people who are pretty much fully restored to functionality that they'd had before.

Mimi MacLean :

Almost like 100%. When I talk to people, when I talk to other people who have had Lyme, I always say to them, like I look at as a great like you did like what, what's your percentage, like? Where are you at, you know, and so, you know, I look at my life, and it's like, I was a D / F at one point where it wasn't getting out of bed, you know, like at a 30 days of the month, maybe two days, I was out of bed and the rest of the time I was in bed now it's flipped, maybe two days all sudden, I'll be sidelined. And then 28 I'm fine. But like today, I'm fine. I feel great. But still, every bone in my body hurts. But I'm not gonna complain because I'm out of bed. And I'm moving and I could think and but all like, I feel like I have arthritis. Like everything hurts. So am I well, am I not? But I'm always intrigued when people will say that they're back to normal. I know, you think had Lyme, didn't you?

Lorraine Johnson :

Yeah.

Mimi MacLean :

And now, are you back to normal?

Lorraine Johnson :

Yeah, I think I fully recovered.

Mimi MacLean :

You do? Interesting. What do you attribute that to?

Lorraine Johnson :

Well, in my case, it was very aggressive treatment. You know, I was misdiagnosed for five years like everybody else, I had to struggle to find a physician who would treat persistent Lyme disease like everybody else. And then I had to struggle with the insurance companies to get payment for my treatment, just like everybody else. And when I went through it, it was so exasperating to me to see what people were going through, I just felt like, you know, we need to change this, something needs to start happening. And we need to change this by giving patients a bigger voice, and all of the discussion that's going on. So that was why, you know, we became involved in large scale surveys. And it's why we became involved with my Lyme data patient registry was so that we could start to look at some of these questions and start to get some of the data that's necessary to get movement in health care policy.

Mimi MacLean :

Mm hmm. So when you say aggressive it was the antibiotics, huh?

Lorraine Johnson :

Yeah.

Mimi MacLean :

You know, I think I was on that path. I was doing well. And then I got sepsis.

Lorraine Johnson :

Oh, okay.

Mimi MacLean :

So I was in the hospital must die from it. And then I after that, I just kind of backed away from that I you know, because it was too hard, so can you talk and you've been mentioning my Lyme data, can you talk to everybody like what they need to do to go on there cause I want everyone to start going on their right and start putting their information on there, because that would help you and help try to make change.

Lorraine Johnson :

Mm hmm. The more patients we have, the more data we have, the better our analysis can be. So people who are interested in my Lyme data, go to mylymedata.org. And you just enroll in the study. And once you've done that, we'll have access to the data, the data is all de identified, we take privacy very seriously. We know that people are really concerned in Lyme disease about stigma, justifiably so. So what we do is, you know, we analyze the data, we analyze it in partnership with researchers who are in true partnership with us. So we have researchers at UCLA that were working with researchers at the University of Washington, the researchers at UCLA got a grant from the National Science Foundation to look at our data, and their expertise in artificial intelligence and machine learning. So we've been working with them for five years. And with the University of Washington for five years, we've published one paper, we've, I think we've given over 68 presentations, we've put together a chart book, that actually gives you information from the first phase of the registry. So this chart book is great, because you can look at it and it'll give you all of this statistics that we haven't had before. Like, it'll tell you how long it's taking people to get diagnosed, how far they're traveling, what symptoms they typically have, which ones are their worst symptoms, what medications are they taking. So it has a lot of data that you really can't find anywhere else that we've pulled together into that eye chart book, which you can download at our website for free Lyme disease.org, is the website. And you go over to the My Lyme data section of the website, and you can download that chart book for free and provides a lot of information, a lot of information is useful for patients is useful for physicians, and it's useful for policy change. So it does all of those things. And, you know, when we distribute it, we distribute it to everybody who was on the working group, we distributed it to everybody who is working on the idsa guidelines. Currently, we've gotten it out to different people in Congress. And we've found a lot of very positive feedback on it. Because, you know, just even like we were saying this question about coinfections. Are they common? Are they not common? Well, they're common in persistent Lyme disease, they may not become an acute Lyme disease, but nobody's really tried to study the persistent Lyme disease population to understand even the basics, are they diagnosed timely? And the answer that is no.Generally, these are people who are diagnosed six months or more after the onset of their symptoms. So their prospects of getting well with a short term course of treatment just aren't the same as they would be for somebody who's diagnosed right after they got bit by a tick. It's a different population, the disease is much more serious once you've let it go that long without treatment.

Mimi MacLean :

Right. Right. So there is a congressman, I wish I could remember his name a gentleman out of New Jersey that has been proposing he proposed like the first proposal to government to the Congress about Lyme disease.

Lorraine Johnson :

Congressman Smith would be my guess.

Mimi MacLean :

Yeah, I think that's it. Yeah. I think it passed like in June or something like that or got proposed in June? Why is he taking an interest in Lyme? Does he have a personal connection? Or does he?

Lorraine Johnson :

I don't know that backstory, I do know that he has been involved in promoting access to care for Lyme disease for a very, very, very long time. And he's been extraordinarily helpful to the Lyme communities. He's held congressional hearings, Congressman Smith has done a real great service to the Lyme community. So I think the bill that you're talking about right now is to promote funding for research in Lyme disease, and that would go to the NIH and to the CDC. So he's doing a lot of work on that area. It's very important that he's involved with Lyme disease. I'm grateful for the work.

Mimi MacLean :

Yeah, I was very excited when I saw that. I see that you have a great community like a membership program for the Lyme disease network. Can you talk about that a little bit?

Lorraine Johnson :

Yeah, you know, people who are members of Lyme disease.org are supporting our essential mission, which is to advocate on behalf of Lyme disease patients, and to provide extensive communications and blogs and news and information and to be involved in patient led research. So all of these are areas that we're involved in and when people become a member, they support all of these activities.We also have a physician's directory, which I think is the most extensive in the nation, we have a symptom checker if you think you might have Lyme disease, we've got a symptom checker where you can tell us what your exposure was, what your symptoms were, we give you some information. And then at the end, you can download a PDF to take to your doctor, so that it becomes an educational tool, not just for the patient, but also for the treating physician. We have the digital Lyme Times as another one of our publications. So when members join our community, they're really supporting all of those activities. We also have a community chat forum, so that patients can talk with each other about issues of interest to the community. So we're involved in all of those different layers.

Mimi MacLean :

That's great. That's great. So the last question I have for you is, what else can people Lyme patients do to help try to move things forward to help either your organization or to help, is it to reach out to the congressman? Or is it to do anything else that they should be doing to kind of try to bring awareness, especially to try and make change in policy?

Lorraine Johnson :

I think that any patient who has Lyme disease should join my Lyme data. And if you know somebody who is well, we really encourage those people to join my Lyme data, we have so much to learn from people who are well, and also people should be contacting their legislators. And they should be asking their legislators to join the Lyme disease caucus, which is helps to promote legislation, you know, at a federal level, which is also very important. I wanted to mention one other thing about my Lyme data, and that is that we are partnered with the Lyme Biobank. So we not only have all of this data on patients, but we also are partnered with a bio repository for tissues and blood. The Lyme biobank is a project of the Bay Area Lyme foundation. So we believe that collaboration between organizations to help put together what is essentially a research engine to help accelerate the pace of research in Lyme disease is really critically important.

Mimi MacLean :

That's great. That's great. Well, thank you, I really appreciate your time. And I'm so grateful for everything you're doing with your organization. Hopefully someday there will be change, and there won't be others that have kind of gone through what you and I have gone through or going through the pain and the aggravation and the denial of everything.

Lorraine Johnson :

That's the hope and the promise.

Mimi MacLean :

Yep, exactly. But thank you, I really appreciate your time.

Lorraine Johnson :

Yeah, and I enjoyed talking to take care of yourself.

Mimi MacLean :

Each week, I will bring you different voices from the wellness community so that they can share how they help their clients heal, you will come away with tips and strategies to help you get your life back. Thank you so much for coming on. And I'm so happy you are here. Subscribe now and tune in next week. You can also join our community of Lyme 360 warriors on Facebook and let's heal together. Thank you.