Cindy Kennedy, FNP, is joined by Michele Miller, founder of the Central Mass Lyme Foundation. Michele discusses how she came to create the foundation after her mother passed away as a result of late-stage Lyme disease. Michele also discusses the upcoming Central Mass Lyme Conference.Through tragedy came triumph. Michele witnessed firsthand the debilitating effects of this disease when she lost her Mom, Jeanne Cloutier in 2013 from complications with late stage Lyme disease. Michele also discovered that her Mom had written about her symptoms and despair with the misdiagnosis of ALS then late stage Lyme disease, not understanding the controversy within the medical community. Michele with the support of her husband, Ken started the Central Mass Lyme Foundation, Inc. in 2014. Their mission is to raise awareness about this disease and/or other tick-borne diseases as well as educate others on prevention and advocating for their health. Michele and Ken hope that these conferences bring more awareness to the general public and to the medical community so that we all will receive proper testing and treatment in the future of this disease.
Transcript of Episode 2: The Central Mass Lyme Foundation
Speaker 1: Welcome to Living with Lyme, the podcast where we educate, advocate and collaborate about Lyme disease, hear from experts as they share reliable information about how to live with Lyme disease. Now here’s your host, Nurse Practitioner Cindy Kennedy.
Cindy Kennedy: Well, hello everybody. Welcome to Living with Lyme. This is your host, Cindy Kennedy. I am with an incredible woman, Michelle Miller. She and her husband, Ken, are the founders of Central Mass Lyme Foundation in Worcester. They are doing an amazing job at keeping people informed and educating and providing as much balance to people’s lives as they can. Welcome, Michelle. Thanks for coming.
Michelle Miller: Thank you, Cindy. Thank you for having me today.
Cindy Kennedy: You had a little drive in because we’re in Wilbraham. Wasn’t too bad. That’s awesome. We had a good time. You know what I’d like to know is why was your foundation created? Then you can expound on what it is all about.
Michelle Miller: Well, I lost my mother unfortunately to complications from late stage Lyme disease, Cindy, in 2013. She was diagnosed with Lou Gehrig’s disease in 2011. I found journals in her home where that day that she was diagnosed it was a death sentence to her, but she didn’t believe that she had Lou Gehrig’s. She was trying to find out what could it be because they didn’t really take any definitive tests. A doctor just listened to her symptoms and the doctor said, “I think you have Lou Gehrig’s disease. You have two to three years to live. Here’s the ALS manual. We’ll see you later. Ta-ta for now.”
My brother and I were at that appointment. We were ready to bring her to a support group for ALS to try to get the help that she needed, but she did not believe that diagnosis. Fortunately, she found someone who was a holistic physician that was also Lyme literate. He tested her for Lyme disease and he said, “This may come back positive. We are going to do the best we can to treat this aggressively,” but unfortunately, it was just too late. The test did come back positive, highly positive. My mother had had it for many, many years, and at that time it was just too late to treat.
Cindy Kennedy: This was in 2000 and …
Michelle Miller: 2011 she was diagnosed and she passed away in 2013.
Cindy Kennedy: Boy, you think that we would have had some better issues to look at, the idea of that you got to look at this clinically. I just read from Dr. Al Miller that, and it was a long time ago. I don’t know how much credibility, but Lou Gehrig actually lived in Lyme, Connecticut, and had a summer home there. Then we go back to thinking about well, was this infected ticks that were planted in Plum Island off, but that wasn’t until later, unless something had happened sooner. There’s another thing to think about.
Michelle Miller: Yes, and he also loved to garden.
Cindy Kennedy: He did, wow.
Michelle Miller: You can find that information on a website. It’s www.ALS-cure.com.
Cindy Kennedy: Wow, there’s a lot of stories. There’s a lot of information. It’s scary and we need to pick it apart and find out what works best for us. How did you get on this venture?
Michelle Miller: After selling my mother’s house, I found all of these journals and realized how much she had suffered in silence.
Cindy Kennedy: What were her symptoms? Give us an idea what was happening that you learned only after.
Michelle Miller: Vertigo, migraines for weeks on end that an Excedrin could not relieve, a lot of stiff neck issues, night sweats, which you know in women you’d be having menopause. There were a lot of stomach issues, rashes, unexplained rashes. She was diagnosed in Florida. She had a rash on her shoulder, was diagnosed with shingles. Was it a blistering rash like shingles? I’m not sure. I wasn’t with her, but I think it was possible Lyme disease. Yet, she was put on Prednisone and she never came back from Florida the same. Slurred speech, trouble breathing, and that’s when we got that ALS diagnosis. Then I found out she also had trouble swallowing.
Cindy Kennedy: It really settled neurologically because Lyme has its way of going wherever it decides it wants to go. You can get it muscular, skeletal, and that’s where this arthritis stuff comes in. People can be diagnosed with rheumatoid arthritis, and then you have this neurologic stuff that is in your brain. Boy, we really can suffer.
Michelle Miller: Yes, it’s a bad, bad story.
Cindy Kennedy: Were you just felt you needed to do something?
Michelle Miller: Well, I needed counseling myself. My first Mother’s Day I probably could have curled up on the couch, but I had two children. I had to live for them. My counselor helped me realize that I could be bitter about losing my mom to this illness, or I could be better.
Cindy Kennedy: Bitter or better.
Michelle Miller: Bitter of better. She said, “You’re at a fork in the road, Michelle, what are you going to choose?” and I chose the better. I set up my first support group meeting at our local library one night.
Cindy Kennedy: For people who have Lyme?
Michelle Miller: For people who have Lyme.
Cindy Kennedy: It wasn’t like a grief support. It was specific for the Lyme.
Michelle Miller: No, because I needed to help other people go through this because my mother didn’t really have anyone to talk to. I set up our first meeting, created a Facebook group, and at that first meeting 23 people showed up.
Cindy Kennedy: Twenty-three.
Michelle Miller: Twenty-three people showed up.
Cindy Kennedy: This was in the Worcester area?
Michelle Miller: It was in the Worcester, yeah, one of the Worcester libraries. The meeting, I just let everybody talk and share their story. We ended up closing the library that night.
Cindy Kennedy: Yeah, did you serve breakfast the next morning?
Michelle Miller: I went home to my husband and I said, “We need to continue doing this.”
Cindy Kennedy: Wow.
Michelle Miller: “There are people out there that have no where to go.”
Cindy Kennedy: Now these people that came, were they definitive Lyme sufferers or people who thought they might have Lyme?
Michelle Miller: Thought they might, negative testing, fibromyalgia, chronic fatigue syndrome, not really sure, wanted to connect with others to think, “Is it me? Am I crazy, or could I possibly have this?” and then connecting with someone else that may have gone through that and is there to help them. That’s what I saw through this group.
Cindy Kennedy: For me, the first resource I had was [Jen Corey 00:07:48]. I call her Dr. Jen, and she is the founder of the Corey Crusaders. She’s on Facebook and you can find that information on my resource page. There was an article about her in a little local Times paper, and I just felt the need. I wrote to the person who wrote the article, and gave my information, and asked if maybe she could get in touch with me. We’ve just been buds ever since. The amount of support and knowledge and watching her go through this … She did one of the podcasts and she talked about where Lyme can travel, whatever, but it was a great day for her. She was having a very good day. She was instrumental.
Then branching off, then you became this big organization, and now it’s a big nonprofit, and what do you do with that?
Michelle Miller: We’re still having the monthly meetings, but instead of the round table of everybody sharing their story, we bring in guest speakers, Cindy.
Cindy Kennedy: Oh you do.
Michelle Miller: Every month, it’s the second Saturday of every month except December, and we rent out a church hall in Worcester, first floor, plenty of parking. We bring in people who I consider are healers, offer alternative treatment because not everyone can go on antibiotics. I believe that the [inaudible 00:09:18] that my mother experienced from the antibiotics really killed her.
Cindy Kennedy: The treatment as with cancer can be worse than the disease. I just got a flashback, so pardon me while I sweat, flashing back to that horrible, but anyways, so these people who are offering different types of support, are they local to the Worcester area?
Michelle Miller: I really reached out everywhere. We have an herbalist from Vermont that came to speak to our group. We had inspirational speakers, George Popovici, who wrote the book, “Angels Walking With Us.” He was very sick with Lyme disease. His wife divorced him. He lost everything because of his illness. He met someone and this person said, “George, you need to write a book about your story and just go out and continue your mission of helping others,” and that’s what he does.
Cindy Kennedy: Isn’t that interesting and it was funny because I talked with Lorraine Johnson, who is the head of LymeDisease.org. I talked to her about that people get extremely lonely in the Lyme situations, specifically because they may be really isolated and alone, and their family ventures in a different direction. She said with all of her information, her learning, et cetera, she finds that the people in the Lyme community befriend each other and it’s for life. It’s strong. The network is a bond. You can complain, you can do whatever you want to your Lymeie because [inaudible 00:11:10] brought us all together.
Michelle Miller: That is crazy. The people that have connected with me, I believe my mother brought them all to me.
Cindy Kennedy: I truly, truly, truly, truly feel like … If any of you can hear this clicking in the background, that’s my yellow lab chewing on a bone. She doesn’t have Lyme. She’s been checked. Just in case you hear that clicking, she’s having a good time over there. At least she’s not barking. How does your husband, how is his driving force into this? Is he like your financial person?
Michelle Miller: He is very supportive. He is my financial. How can I say this? We have a board so our board meets. We have conference calls. We’re treating this like a business. He saw what my mother went through, unfortunately, and he knows that it’s an invisible illness really. When people say, “How are you doing? Well, you look fine.”
Cindy Kennedy: Yeah, “You look fine.”
Michelle Miller: “You look fine,” but do they really know? My mother lost friends. She had trouble talking so she couldn’t go out to lunch with her friends as much anymore. These were friends that she had from grade school. It was so sad. I was sad for her when I read in these journals.
Cindy Kennedy: Your heart just breaks. I’ve dealt with that.
Michelle Miller: My husband is my biggest supporter, and he knows that we’re on a mission to just raise awareness and educate, and have someplace to go.
Cindy Kennedy: You have something really big coming up. Talk to me about it because we’re going to make sure that people know about this and how to get to it.
Michelle Miller: Thank you. This is our third conference on Lyme disease in Worcester at the Worcester Technical High School. It’s Saturday, September 23rd from 9:00 to 4:30.
Cindy Kennedy: This is for 2017.
Michelle Miller: Yes.
Cindy Kennedy: Hopefully, every year we’ll be doing something maybe?
Michelle Miller: This is like planning a wedding. We have volunteers. Just so you know, our nonprofit, no one gets paid a salary. All these donations we help raise awareness to organizations, garden club, Boy Scouts. I go out and ask for no money whatsoever. We’re giving handouts, brochures, tick cards, magnets, any information that we can. We also have right now, Cindy, going on a Lyme library campaign. Our board’s mission for 2017 and 2018 were to distribute library kits across central Mass. to every public library in our state.
Cindy Kennedy: Is this like a kit that stays there that they read about?
Michelle Miller: It’s a kit. It’s $100 worth of books and a DVD …
Cindy Kennedy: Oh, I see.
Michelle Miller: … that go to each public library in central Massachusetts. We’re starting with the highest population first. These libraries are getting these kits, and we’re finding out that they’re doing Lyme talks now. They want to know more about the conference. It’s been amazing to see that we’re getting that awareness.
Cindy Kennedy: When it comes down here, it was interesting. Someone tried to get in touch with me and ask me to do some educational something for their church.
If anybody hears that, that’s Toby the cat. I’m really sorry but Toby, what is it? What would you like to say? No, nothing now. See, I put you on the spot.
Anyways, if something comes down this way, that would be awesome and I would love to entertain that. That would be something really good to know about. Who knows? We could move this east and west.
Michelle Miller: We got contacted by someone in Virginia who wants to run the same campaign in Virginia, so we gave them the list of books that we have in our library kits. Hopefully, they can do the same in their area. Then LymeDisease.org wrote an article about our campaign.
Cindy Kennedy: They did. The thing is, and I say this all the time, is you get some ground swell under people, and if they feel that they are credible as well as they have other people joining them, then you have more motion forward. When it came to having this little support group that’s five or ten people, and this one, and they don’t know, and they don’t coordinate efforts, you can’t get anything done. We need that million man march to make a difference, and we need to promote all of the information that we can to help change policies. We need to get people to understand that Lyme is not necessarily a sore knee. It is not. It masks itself. It’s different. Now I don’t want to say that everybody that has something different is Lyme disease, but when you do a million dollar workup on someone, whether you do tissue biopsies, and you have drawn nothing, you have no conclusive idea, and they match something, especially live in the Northeast, they might have a dog, they might be in the backyard gardening, they went on one hike … My daughter got Lyme disease in Germany. It can happen.
Anyways, before we end here, I will definitely place all the information so people can contact you …
Michelle Miller: Thank you.
Cindy Kennedy: … and get their tickets and go to this day long conference [crosstalk 00:17:38] …
Michelle Miller: With our sponsors, we’re already received $12,000 in sponsorship for our conference.
Cindy Kennedy: That’s so great.
Michelle Miller: Our tickets are kept again at $10.
Cindy Kennedy: That’s awesome. That’s awesome. People should bring a family member, bring a friend, a coworker, somebody who doesn’t really understand or know. Just listen to these speakers. You have a variety of speakers. If they go to your website, which again will be posted, they can learn about the people who will be there. I’m going to tell you I know some of these names, and I have learned a lot from them, and read about them, and one actually did treat me. That is awesome. Big questions here. Are you ready, Michelle?
Michelle Miller: I’m ready.
Cindy Kennedy: What ticks you off?
Michelle Miller: The medical community. Yeah, it ticks me off, and how they’re not recognizing how serious this disease is, and there’s so much misinformation about if you get bit by a tick what do you do. Michelle, what do you do? We put together a short video, “Keep the tick.” It’s gone viral on Facebook organically we were told, which is a good thing. It’s a 30 second video on how important it is to keep the tick and send it in to a tick testing lab. As ridiculous as it may sound, it could save someone’s life.
Cindy Kennedy: Well, it can and then you have these other providers that aren’t willing to treat someone. If you have the proof, and you don’t have to go through whether you had negative testing, whatnot, that will save and solve the problem of oh, I don’t want to give prolonged antibiotics. That is powerful. That is very important so that’s great. Number two, somehow in our lives, especially now that I can relate my life to having Lyme and I’ve been given lemons. My choice is pretty clear. I am making lemonade. What is your lemonade, Michelle Miller?
Michelle Miller: The foundation. I could have been bitter the rest of my life, but I chose to be better through months of counseling, understanding why my mother lost her life to this disease.
Cindy Kennedy: Thank you for sharing that. That’s really touching and it’s heartwarming. I know it’s still fresh. I can see it in your face.
Michelle Miller: Thank you.
Cindy Kennedy: Again, thank you, and for all the people that are going to come out to the conference and you’ll get to meet Michelle and Ken Miller. You’ll meet some good friends I’m sure. I encourage you to join us. That’ll be a wonderful enlightening day.
All of you out there, thank you for listening. This has been another episode of Living with Lyme with me, myself and I, the three of us, Cindy Kennedy. Come and join us again. Until then, take care.
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