Transcript #92: Living With Lyme Disease

Guest: Cindy Kennedy          Guest Title: Family Nurse Practitioner and Podcaster

Date: January 24th, 2018

       

[Intro music]

 

 

Debra:              Hello everyone. This is Debra Ruh and you’re listening to or watching Human Potential at Work. We talk a lot about inclusion of people with disabilities on the program. One thing that often people forget about is that many people with disabilities have invisible disabilities or hidden disabilities. We can’t just look at a person and assume that they are not part of this class. Of course, we’re always talking about empowerment of people with disabilities and also that even if you are a person with a disability and many of us are, you’re still a human being. You still have a lot to offer the world. Our guest today, she has her own show called Living With Lyme. Her name is Cindy Kennedy. She is an expert in individuals that are living with Lyme disease which is very prevalent in the United States. I am not as familiar with it [inaudible 00:01:10] globally. But we have it a lot here in the United States. Cindy, welcome to the program.

Cindy:              Thank you, Deb. Nice to be here.

Debra:              Yes. Cindy, tell us more about who you are and about your work. I know that we both are friends with Doug Augusta who is the producer of my show and a good friend. And he recommended your work and I have been following it. I think your work’s very important. Tell us more about you and your program.

Cindy:              Thank you. Doug is our producer here too. We do have a lot in common. I am a family nurse practitioner. I’ve been practicing as a nurse practitioner for just about 20 years now and I’ve been a nurse for 34 years. And it’s kind of ironic that as a nurse practitioner when I started to not feel well that I had no idea what was wrong with me. I spent a lot of time, many, many years going from provider to provider and getting answers like, “I don’t know. Let’s send you to this doctor.” Anyway, long story short, I had had some episodes of double vision years ago and they thought it was an autoimmune issue. It just came and went. Finally in 2011 it was kind of like a perfect storm. And that perfect storm was a lot of stress and things really got bad. And I was dealing with fatigue and sleep disorder and then it just progressed into constant flu symptoms.

                        Finally I found a provider who realized that Lyme disease is not necessarily a bunch of lab tests. In fact, most lab tests are less than 50% accurate and people don’t know that. People will say to me, “Well, why didn’t you just get a lab test?” It’s not effective. I started treatment. I went on from oral to IV treatment. Then, I just had enough of it. I had a really bad allergic reaction. Then I just progressed into using more herbal or now preparations that are specific for Lyme. It’s not over yet. I am a lot better, but it’s not over yet.

                        In the process of all this, my work was still my work. I was contributing on as best I could. Fortunately, my work was something that I had been used to doing. I was able to continue with that, although I really decided I was just too tired. It was taking me days to recover. What I did was I cut back a little bit. I am going to cut back another little bit, reduce by a day coming next month. A friend had said, “You know, you have a lot to offer. Maybe we should take this from another approach. As a nurse practitioner you understand the information, the medical side of it. Let’s talk about doing some podcasts.” At that point, I didn’t even know what podcasts were. Here we are about almost six months into it and we’ve released 15 or 16 episodes. I’m a people person. I talk to people all day long. It only seemed right to put the combination together, learn more, find more people. And then I realized I’m a facilitator. I’m not necessarily the complete expert on all these different topics. I can just sit there in the middle and say, “Okay, what about this?” Or “Could you give an explanation of that?” Or “Could you tell us what that actually means?” I’m really enjoying it. And I really feel like I’m giving back.

Debra:              I’m sure you have some statistical numbers. But how many people are living with Lyme disease? Do we know the numbers?

Cindy:              There’s a big battle that we have with the Center for Disease Control and the National Institute of Health. They underestimate in a huge amount. Remember I said that the lab tests are less than 50% accurate. The statistics are that 300,000 people are affected with Lyme each year. That means that they tested positive. Someone like me who never tested fully positive have not been counted into that. If you think about adding in another 20%, because 20% of people affected will not test positive ever, ever, ever. You add 20% more onto the 300,000 and you’re kind of close to where we’re at here in the United States.

Debra:              Just for the people that are listening. Many of our listeners are outside the US. Just ground this a little bit more. I’m not sure how many people are familiar with Lyme disease. But Lyme disease is something that you get from ticks on deer here in the United States. Once again, I live in the East coast in Virginia. And I know it’s prevalent up and down the east coast of the United States. You might know, Cindy, I’m not sure where else it is. But I do know quite a few of my friends have been impacted by Lyme disease. And it has been very, very negative impacts too.

                        I had one friend of mine that he was very, very healthy and doing his career and just really thriving. And all of a sudden his health just started taking these really weird turns. And he had all these problems. And it took him years to finally get a diagnosis of Lyme disease. And then once you, as Cindy knows, once you get treated. I mean once you get diagnosed, which is very difficult to do, and a lot of physicians just dismiss it. But the treatment, getting well, was very difficult. Also, my husband, as I talk on the program was diagnosed about a year ago now with early on-set dementia. We couldn’t figure out why he was getting that diagnosis because he didn’t have some of the life style factors associated with that diagnosis. We live in Virginia. And he has been bit by ticks many times. A couple of times when you get the bulls eye, which they think … That’s controversial. I’ll let Cindy talk about that. But, I had him tested for Lyme disease. And the tests were sort of inconclusive. But I’d also read up on it and realized that it’s very hard to be diagnosed.

                        The reason why I wanted to have Cindy on was not only so she can talk as a person that’s been affected with something puts her in the class of disabilities. As an individual, she’s in a protected class. It’s just impacted so many people. It’s really impacting lives and a lot of people don’t even realize that they have it. I thought it is a good example of a hidden or an invisible disability. As someone like Cindy who is working. She’s a nurse. She’s working. She’s doing her job. And then all of a sudden she’s having these extreme periods of exhaustion, which is very hard when you’re working. It’s just one example of a hidden disability. But I don’t know if you want to comment a little bit more about it. But I don’t want to assume all of our listeners know what Lyme disease is. I know I know about it because I’m in the east coast of the United States. But I’m ignorant myself, Cindy, about is this prevalent throughout the United States? Is this where deer are? Because deer are in a lot of countries. And I don’t know if you know some of that.

Cindy:              I do. First of all, lesson 25, less than 30% of people ever get a bulls eye. The spirochetal infection is transmitted by a tick bite. And ticks are found everywhere. There’s certainly a variety throughout the United States, throughout the world. The UK is very, very infected. Australia is another problem. Lyme disease, the ticks are carried on just about every animal, every bird. The biggest problem in our area here, I am in the Northeast in Massachusetts, is the white-footed mouse. A few winters ago we had a huge prevalence of acorns. They feed on acorns. Instead of some of them dying off, the weaker population, they thrived. They are very poor groomers, thereby having a lot of ticks on them.

                        Now, in their normal biome, they’re not bothered at all. Same thing with deer, they’re not bothered by this. It’s kind of part of their being. But we are not. We are totally infected once we get this. Not every tick carries the bacterium. It really depends on their life cycle. If you look at a map, the Northeast is socked in. It is, if you can picture the outline of the states, everything is like red or black, whatever they’re using. It’s just everywhere. Lyme disease, it has been reported in every state. It was reported once in Hawaii and that was probably a traveler that brought it on their person to Hawaii. It is in every part of the world except Antarctica. It’s just too cold for them to be there.

                        We are, right now, at a crossroad. If you look back the last 10 years it was them versus us meaning the primary care people, Infectious Disease Society of America, they were on one track. They believed it was an easy to diagnose disease. It was easily treated and everybody gets better. And then there’s other people, and those people are the International Lyme and Associated Disease people who have studied this, know it, see it. They can tell that there are people that are either diagnosed late.

                        The infection first is localized. And that’s where some people get the bulls eye. And then it spreads and then it’s stealth. It is something that embeds in tissues, in joints, in organs. And then it’s not found in your blood stream anymore and your body may not be able to produce the antibodies because it can’t find it. One of the most debilitating types is when it is neurologic, when it lodges itself in the brain. Talk about disability. People, literally, like your husband develop all kinds of symptoms that relate or look like other things that are very serious, Parkinson’s, MS, dementia. It’s very difficult. And when you have two sides of the story and they’re not communicating and they don’t care to communicate, it’s very difficult. But as I said, we’re at the crossroads. There’s a lot of research going on to develop better tests to prove that there are “persister cells”.

                        These cells, like, say that somebody has a cold sore. That is part of the group of Herpes. You don’t always have an obvious cold sore, but something, a perfect storm happens, you’re under a lot of stress, you get sick. And all of a sudden you have a cold sore. Well, that can happen with Lyme too. You could be infected with it. It can hide. And your body kind of keeps it at bay for some reason, and then all of a sudden, boom, you’re in big trouble. We’ve got to have more education. We’ve got to have better tests. There are some labs that have worked on it.

                        The problem being, not only is it disabling in terms of the way you think. When I first started my podcast, Doug will probably agree, I was having trouble stringing two sentences together or having tremendous word find issues. And now, it has become better. I think that I’m on the right road. And doing holistic approaches are helpful, however, when you get somebody who is so infected, it can be so devastating. And like I said, the MS route. Say someone’s falsely diagnosed that way and they’re dragging a limb. These people are disabled. They cannot go to work. All different types of level.

                        Now, my story is that I wanted to go to work. I wanted to be busy. I wanted to contribute. Looking back, I’m not really sure how I did it. I really don’t know. I guess I really wanted to make sure that I was contributing to my family. My kids were still in college. And I just didn’t want my husband to be stressed. I try to protect everybody. As the mom and the wife I really wanted to be there and work. And I felt compelled because of my patients. I have a great rapport with my patients. They trust me. They depend on me, so I just kept pushing and pushing and pushing and pushing. That was the only thing I could do. Everything else in my life had to stop. My housework, my grocery shopping, my socialization with friends, it just couldn’t happen. I spent hours and hours and hours on the couch. Talk about disability.

                        And one of the biggest problems we have about federal disability, social security is that Lyme disease itself is not a disabling factor. Insurance has a hard time with that and so doesn’t the government. They feel that what the Center of Disease Control says, that it’s easily diagnosed, easily treated and it goes away, is why they just don’t allow people to get disability. However, if you are diagnosed with fibromyalgia, which fibromyalgia is muscle, tissue pain, and that is certainly part of what Lyme sufferers do suffer from. You can kind of get into the realm of collecting and helping your family that way. But that wasn’t something I really wanted to do.

Debra:              Lyme disease, which I didn’t know that, it is not a protected class under the Americans with Disabilities Act?

Cindy:              No.

Debra:              Okay, because I would think it would be.

Cindy:              You’d think it would be.

Debra:              Well, because it can have really serious repercussions. I have read so many stories. There are a lot of Americans that are being diagnosed with dementia. There is someone being diagnosed with Alzheimer’s every 66 seconds, every 66 seconds. Generally, the person is diagnosed with dementia first and then goes onto, in some cases, it moves onto Alzheimer’s. I was educating myself to make sure that I could be supportive of my husband. What many of the doctors, and these doctors are sort of considered … they’re very well-recognized doctors. But some, as you mentioned, the battle that goes on in the medical field between the patients and all the different things. Maybe a better way to say it is people are different camps. These doctors that I was following that were talking about Alzheimer’s and that so much mis-diagnosis is going on of people being diagnosed with Alzheimer’s. They’re claiming, of course, we only know that a person has Alzheimer’s once they die if somebody does an autopsy. That is the only way you can know for sure you have Alzheimer’s.

                        But so many people are being diagnosed with dementia and Alzheimer’s in the United States, for example, that they’re saying when they did studies and people that had been diagnosed with Alzheimer’s for many years and had died. And they found that 50% of the people that had been diagnosed with Alzheimer’s did not have Alzheimer’s. They had treatable things like Lyme disease, heavy metals. Different things like that. They said one of the first things you should do if you’re on a journey to figure out what’s going on with the health of yourself or a loved one, like I am with my husband, is be tested for Lyme disease. Be tested for heavy metals. There are just certain things.

                        The problem with the Lyme disease, though, is as you said it’s very difficult. And you can’t count on the information. You get false positives. You get false negatives. It’s a very complicated issue. I would think it’s also only going to become more complicated because our weather seems to be getting warmer. I won’t get into that conversation, but there seems to be climate change happening. As it gets warmer, the ticks don’t die off. And it goes to sort of what you were saying with the mice.

                        Now, here in Virginia, it’s generally the deer population in Virginia and Pennsylvania, I believe. I think it’s very important to understand what is happening. Know who the experts are. Educate yourself. And right now, I think there’s so much we don’t know about the brain that it’s very important to be your own advocate and really try and figure out what’s going on yourself. Don’t just take the word from one medical professional. You need to be a detective.

Cindy:              You do. And what you said is, that’s pretty sad. That you had to go about being that advocate and educating yourself to basically push to see more results, more tests. And it’s unfortunate. There was a doctor. I believe his name is Dr. McDonald who was studying Lyme.

Debra:              Yes.

Cindy:              Is that correct? Do you remember that name?

Debra:              Yes.

Cindy:              Yes. And he did a ton of research and found every autopsy he was part of, almost everybody had spirochetal tissue or bacterium in their brain. And they had previously been diagnosed with Alzheimer’s. There is a Dr. Miller out of the Boston area. And his son’s wife was suddenly diagnosed with ALS, which is Lou Gehrig’s disease. And it didn’t seem right to him. I don’t know if he was just internal medicine or he, himself, was a neurologist. You can actually find him on YouTube. Some of his stuff is amazing that he talks about. But he was completely, he encased himself in anything he could find about Lyme disease. And he insisted that his daughter-in-law be screened with not the general, conventional testing. He wanted another test that had two of the markers, or two of the bands that were actually removed back when they started out with the LYMERix vaccine, which we now know had a tremendous problem with falsified information. And that’s a whole other show. That’s a whole other problem.

                        But, when, in fact, they found a lab. And there are big labs that do this. She did test positive for Lyme disease. You have to think about this. Any of the people that are outside. It doesn’t matter if you’re in your backyard. It doesn’t matter if you’re having a picnic and sitting on a picnic table. Any place can have ticks. If you go to my website which is www.livingwithlyme.us, you can see what you should do to protect yourself. There are recipes. I put out recipes with essential oil that can help deter ticks. The process is you come in the house, everything you have on your body goes into the dryer for 10 minutes on high. That will kill the ticks. And then you into the shower with a good scrub brush scrubbing everything.

                        Look at this mop of hair. I’m sure I lost a tick in there and never found it. They can be the size of poppy seeds. Most people do not see that. And especially if you have a lot of moles on your body, you can’t find them. You don’t see them. You don’t feel them. And they do their damage.

Debra:              You mentioned your website. On your website you have tips for preventing it. Do you have information on if you suspect you have it what to do? Because what I found just as an individual is that when I went to the doctor … Well, using the instance, my husband’s been bit many thousands of times and so have I. But I remember hearing that if there’s a bulls eye you should be concerned. When I saw the bulls eye on him, which was … I don’t remember. I think he was bit on his arm and it turned into a bulls eye. I remember being educated about that. I sent him to the doctor. And the doctor just poo-pooed it and said, “Oh, yeah, your wife’s paranoid.”

Cindy:              Are you kidding me? A bulls eye is Lyme disease. It has to be treated.

Debra:              Oh, yeah. No, they didn’t do it. How do you treat it? Do you treat it with antibiotics? I don’t even know how you treat it.

Cindy:              Yes, yes. The first line of defense is doxycycline. You hop right on that. Some doctors are giving this 24 hour treatment, like a massive dose. I could find no research that says that that is truly helpful. But when someone develops a bulls eye, that’s Lyme disease.

Debra:              That’s what I had always heard.

Cindy:              Yes. The minimum amount of treatment is three weeks. People who have studied it are recommending it longer. But it’s very hard to get a provider to treat longer. They’re all worried about antibiotic resistance.

Debra:              Right.

Cindy:              My argument with that is, are you looking at what’s in our food, in our dairy? There is animals. They’re all treated with antibiotics. We’re ingesting that as well. Maybe that’s part of the problem about antibiotic resistance. Again, these people are not educated enough. If you go to that website and remember it’s dot US. It’s not dot com or dot net. It’s dot US, you’ll find a resource page. And on the resource page is a lot of information as well as where to send a tick. Anywhere in the world that has found a tick, you can take it off. It can be alive, it can be dead. You can send it to tickreport.com. Now, just because a tick tests positive doesn’t necessarily mean that individual will get Lyme disease, such as you. You know that you got bit, but you never developed Lyme disease. You may carry that, but your body’s been able to take care of it. It doesn’t mean that somewhere down the road that you might not get sick. But knowing that you’ve had a tick on you is critical.

                        There’s also a checklist from Dr. Richard Horowitz on if you think you have Lyme. You go through it. You do your scale. And you can add up your score at the end, if you reach a number that is suspicious. Then you can take that and go to your doctor and say, “Okay, let’s look at this a little bit more.” And one of the labs that is extremely top notch with detecting it, a rate of in the 90 percentile is IGeneX. And that is out in California. You can get a test kit. You can order it yourself. You do have to pay out of pocket. It’s very expensive. When you look at what Lyme sufferers have to pay, they’ve maxed out credit cards. They’ve lost their homes. They’ve gone into their retirement. Sometimes if you think about it that way, it’s a good investment. But you have to have a doctor sign off on that test that they will allow the person to get it and accept the responsibility of looking at those test results.

                        Now, people are often afraid of that. However, you can call IGeneX. They’ll walk you through it. They’re not going to leave you out there in the cold. People shouldn’t be afraid. There are other labs that are a little bit less expensive. But I have not dealt with them so I don’t know their relevance. But there’s more than just the standard hospital or Quest lab, whatever. There’s more. And there’s a lot of educated people out there that are out to help. The problem being is getting your appointment with them. You can wait a long time.

Debra:              Yeah. Because it’s an epidemic. Cindy, thank you so much for being on the program and for your work. Once again, her website is www.livingwithlyme.us and, Cindy, how about on social media? Are you on social media?

Cindy:              Yes. I’m on Facebook. My page is Cindy Kennedy’s Living With Lyme. I’m on Twitter, Living With Lyme one. And LinkedIn. You can find me on LinkedIn. If you go to my website, which I encourage you to do, subscribe to the website. Make sure that you are part of the solution. Knowing what’s going on, listening to the podcasts. We do the narrative as well, so you could read it if you were at work and you don’t have earbuds, and staying connected. It’s just critical. You can also find us on Stitcher Radio, I Heart, Google Play, I Tunes. We’re out there. We’ve had thousands of downloads already. Getting the word out is critical because people don’t know. It’s a chain reaction. It’s a snowball effect. You tell me. I tell Suzy. Suzy tells three of her friends and then people get more involved. But the more people we have with the knowledge, they could protect themselves. They can protect their loved one. They can keep people at work, so that they can be part of it. My Lyme doctor said to me, because I said, “I don’t even know if I can keep working.” And he said, “Keep working.”

                        People affected with Lyme are great workers. We become systematic. We do things in a way that we can almost protect ourselves. And when we do it over and over and over again, which my job is very similar. I’m dealing with women. I do gynecology. I know that. Thank God. I would have never been able to leave that job and start another job and have to learn that. My ability to read and comprehend and learn was severely impacted. And at this point, it’s much, much better.

                        But I had one other thing I wanted to say was that when you have it infected in terms of your brain and you do scans, MRIs, Spec scans, whatever. And you see these changes. The person, themselves, physically can start to improve. But the changes in the brain take longer than the rest of it. There can be some long term sequelae. But the good news is, if you get the right treatment, you have to really improve your immune system and that’s with gut health. You’re going to get better. You just have to keep on going. Never say, “I give up.” Never settle. That is so important. Never, never, never, never settle.

Debra:              I agree. Cindy, thank you for being on the program and for your work. We are going to continue to watch. And we really are grateful. Thank you.

Cindy:              I appreciate that. Thank you for having me. Have a great day and good luck with your husband.

Debra:              Thank you. Thanks everybody for watching or listening.

Cindy:              Bye now.

[outro music]

You’ve been listening to Human Potential at Work with Debra Ruh. To learn more about Debra and how she can help your organization visit RuhGlobal.com. If you’ve enjoyed today’s episode and you want to make sure that you don’t miss any future epsiodes, go to itunes and subscribe to Human Potential at Work. Thanks so much for listening and we’ll be back next week with a new episode.