Jane is a 58-year old woman married to her college sweetheart, Chip, for 36 years and the mother of three children. Ali, her oldest daughter and a Patient Talk contributor to the series, was diagnosed with late stage Lyme disease two years ago. As a family they enjoyed all sorts of outdoor activities with all three kids being involved in soccer, swim team and basketball. Jane describes Ali as “always being jovial and happy.” She talks about developing mononucleosis after Ali’s birth and is confident that her immune system was compromised at that point. Ali had lots of stomachaches, suffered from weak joints and had a very difficult time keeping up with school. In spite of these issues Ali graduated from high school and went off to college. It was at this time that she began experiencing circulation issues with her hands and feet and was constantly tired. In the middle of her sophomore year, Ali returned home for spring break and Jane and Chip were very concerned about her health. Jane will never forget the day she heard from their rheumatologist that he was confident that Ali had Lupus. That began an 8-year journey being treated for a disease that she was misdiagnosed with. Ali graduated from college, returned home and started her life in the working world. Jane describes how her daughter got even sicker and how difficult it was to watch as she dealt with the side effects from the medications to treat Lupus. The side effects were so daunting that it got to the point where Ali was unable to work.Jane admits to not being aware of Lyme disease and thinking it was predominately found on the east coast. An associate of Ali’s recommended she be tested for Lyme disease and it turns out she was positive both for Lyme and a number of co-infections. Jane speaks to the significant financial strain that this disease put on the family and how one of the biggest challenges for people suffering from Lyme is that they seem to look just fine. She says Ali “presented herself just like any normal person, and yet she was working like a super hero to keep up with their friends, family and work.” Ali chose to go the naturopathic route to treat her disease, which her mother enthusiastically supported. Jane is very proud of Ali and she and her entire family continues to support their daughter and sister with the knowledge that she is getting better.
My name is Jane. I'm 58 years old. I have a daughter, Alli who was diagnosed with Lyme disease about two years ago. So, I have been married to my husband Chip for 36 years. We were college sweethearts, and have had a beautiful life. We have three children, Alli is our eldest. Our kids were involved in soccer, swim team, basketball, all of that. We've got lots of friends in the area, and Alli was always jovial and happy.
I developed mononucleosis when I was breastfeeding, and we feel pretty confident that her immune system was compromised when that occurred. She's been kind of sick or-or vulnerable to illness her whole life. She had lots of stomach aches, she had very weak joints. Looking backwards, it explains a lot of things, but at the time, it just sort of seemed like she was just working really hard to keep up with a very busy family.
In elementary school, she kept up. Middle school got much more difficult. She struggled with math. When she went to high school, things really got complicated. We really felt that she was struggling with some sort of learning disability. Taking tests was excruciating. We felt that it was time to-to get some testing, which we did. And they came up with a diagnosis that she had a memory disability. When we went to the high school to talk about what they could do to accommodate this, they said "Basically, it's difficult for the teachers to go through the categorization of special ed, and, you know, she's doing just fine. Just have her do what she's doing." That was really difficult to hear.
When she decided to look for her college, she wanted to go to a big university and have an experience like her father and I had had, develop friendships like we did, and the best thing that happened was the University of Oregon was suggested, and it was a perfect fit for her because they have a very good and supportive network of special education.
When she went off to college, she moved into her sorority house and suddenly was getting sick all the time. She complained about her hands being cold and her feet being cold, and her circulation was pretty much coming to a halt at her extremities. She was tired all the time, I mean, she was really missing out on a lot of things, and it became pretty clear that something just wasn't right.
Middle of her sophomore year, toward the end of spring break, she was home. We were concerned about her health and I said "You know, I think we need to go see another doctor." I was always concerned that there was just something missing from what we were getting. We went to a rheumatologist, they did a series of tests, and I'll never forget being in a parking lot when I talked to the doctor and he said "We are very confident that your daughter has lupus."
Lupus is an autoimmune disease. It affects different people in different ways. Like other autoimmune diseases, it presents itself mysteriously and my description of it in Alli's case was that it was rheumatoidal. She had joint problems, it was painful. She was having circulatory problems. She had Raynaud's disease in her hands for circulation. There are a lot of other symptoms of lupus. In Alli's case, the organ that was the most compromised was her liver. It was a lot of medication. She was in and out of getting blood tests, and then she got really, really depressed, and it affected her ability to-to get through. She took a semester off. She had a really good therapist that she was working with, very, very supportive network of friends at the university and family members that were in the area. But I never was confident that what she was being treated for was really what she had.
So, Alli graduated. She came back to San Francisco. And Alli went to work in the human resources field, and was working for a couple of different PR marketing firms, and was sick, and got sicker and sicker and sicker. And was finally... she had to quit her job. It was very difficult to witness, because what she was being treated with, the kind of medications she was taking had side effects. She was exhausted; she was unable to function in her work. It was taking its toll on her emotionally as well as physically.
Alli was in such discomfort, she was so miserable, the doctors that she was dealing with were looking at alternative medications, treatments to use, and at one point, they suggested that she turn to chemotherapy. She was very upset about this, and it definitely caught my attention, it caught my alarm, and since I was not really convinced that lupus was in fact the correct diagnosis for Alli and the problem that she had, since it had been going on for so long and she really was getting worse, it didn't seem appropriate.
Alli was an advocate for her health and her treatment, and said "I-I just don't think I'm... I don't think I'm ready for this. And I think it's time for me to look at other remedies." And she actually researched the other practitioners, and one of them was very active at this school in Berkeley that she ended up going to. And they were actually the ones that suggested that lupus might not be the diagnosis that was correct. They wanted her to get some tests for Lyme, and she was open to the idea. And at that point, we really didn't know that much about Lyme disease. I knew that it was a tick-borne illness, that it was something that was predominantly on the East Coast. I didn't know whether this was a good thing or a bad thing. She did blood testing, I called it sort of primary, secondary, in-tertiary level testing, and at the tertiary level with one of the doctors that was recommended to her that she was seeing, he identified and showed us on the screen that yes, in fact, she has Lyme disease. It was a bittersweet moment. Excited to hear that she didn't have lupus, but we were also heading into uncharted territory, and we really didn't know what this was going to represent. It also was at the end of 10 long and frankly very expensive years of treating something that she didn't have.
The financial strain on the family is excruciating. It was very difficult for-for Alli to come to us. It was very difficult for us to continue supporting this when for years and years, there really was no evidence that she was getting any better. And there was really no guarantee that there was a cure. And yet, you can't stop because you might be close.
One of the biggest challenges of people suffering from Lyme disease is that they seem to look just fine. Alli looked beautiful. She could present herself just like any normal person, and yet she was working like a superhero to try to keep up with her friends and community and family and work. And there were times when I'd say "Oh, Alli, you know, just put on your jeans and go out, have some fun." And she just couldn't do it, because she was exhausted because she was in pain, because her mind wasn't clear. She was very foggy; she was not feeling like she could carry on normal conversations.
Alli was very good at disguising this; she had done it her whole life. She also was very proud and-and wanted to be a part of what was going on with the family. But there were times when she just had to excuse herself; she'd leave early from dinner. You could see the physical side of Alli's illness in her hands, in her feet. Sometimes the pain in her feet was so bad that she couldn't really walk. I could always tell when she was feeling on during those years. There weren't that many "ons." I could get really emotional about this; it was very, very difficult to see, and to know what to say. I would sometimes get impatient, and not necessarily with her, but with the fact that her choice of treatment wasn't moving fast enough. I think her sister and brother have been amazing, and very patient with Alli through the years. Her sister is 18 months younger than she is, and she has risen to Alli's side like I never thought would be possible. She has been her life support, and has been that way for years. Her brother was very much committed to the idea of traditional treatment for Alli and was very upset that she was doing so much alternative. I think he recognizes that she's done the right thing for Alli. She has very aptly described the fact that her Lyme disease is a chronic Lyme disease, that she has had it for so long that traditional treatment with antibiotics wasn't appropriate, that that's more appropriate for an acute case of Lyme disease. And when she did end up in the hospital because of the antibiotic treatment that she received in her initial Lyme disease treatment was probably the lowest point in our lives.
Unfortunately, she had a severe reaction to the antibiotics that she was given. The doctor said "Let's cut it back, it doesn't look like your body is accepting this the way it should." And she said "No, no, I want to get on the speed train here, and let's-let's get this done." So, she did continue with it. Within about two weeks, she started getting a rash all over her body, a very toxic reaction to the medication, and she landed in the emergency room twice. I took her both times with her boyfriend, and the first time was very difficult. The doctor basically didn't even acknowledge that Lyme disease exists in California, so he didn't acknowledge the treatment that she was on was the correct treatment for her, but the only thing that would cure her was a heavy dose of Prednisone, which sent her in a complete tailspin. He said "I-I won't release you wi... and without you acknowledging that you're refusing treatment for this." And she said "Okay, well, I'll do the-the Prednisone," and two days later, we were back at the hospital, where they did extensive testing and treatment for now the peeling of skin that was going on from the inside out. And it was excruciating to witness. I think the lowest point of our experience there was when her boyfriend and I had to treat her with a gel treatment at the hospital from head to toe, all parts of her body together, and she was very cute and said "Here I am, you know, all in my nakedness with my mom and my boyfriend." [LAUGH] It was really, uh, an amazing moment, you know, the saying a mother is only as happy as her least happy child or as healthy as her least healthy child, and that certainly came into play during this experience.
We fortunately were living very close to Alli, so when she was really sick, she chose to come and stay with us, so that I could treat her as a mother. And I was grateful for that experience, and I think it went both ways. I think it was also good that my husband was there as well, because up to this point, for the dad, most of it is writing a lot of checks and being supportive, but kind of wondering "When is this all going to end?" And he was really a believer in the fact that Alli was suffering, it was a very tangible example of what Lyme and the consequences could do. "This is happening, this isn't just psychobabble." But Alli was 27 years old, living with her boyfriend. It was hard not to admit that every single minute I was worried about what Alli was doing, and to crawl through life pretending that everything was fine. I didn't know what to expect. I didn't know how serious it was going to get, or what the next day was going to look like.
When Alli chose to go through some unconventional practices, I was very enthusiastic. She was committed to this, and felt that her body... this is what her body wanted. And at this point, there was no fighting it. What I didn't like was that there was no measurements; there was no scale of beginning and end. We just pretty much had to go on how Alli was feeling, and that part was kind of tough. There was a big leap of faith.
So, over the last year and a half, Alli has taken a very aggressive approach to her treatment. It's-it's a blended approach that she has studied and-and is doing really well with. I think we're encouraged. She has committed to this, and I've seen a big improvement in her health. She has more energy, her brain is clearer, she's got a more positive outlook, and her system seems to be working well. She is taking this and running with it, and I see in her a new girl. She has gone through her training, and she is investigating elements of Lyme that she never knew existed, a lot of people don't. And she's really pursuing it. And I think she really wants to take this to the next level, to be able to help people that have Lyme disease or that don't know that they have Lyme disease. But she recognizes her highs and lows more easily, and she is more proactive about treating herself and recognizing what is working for her and what's healthy for her.
I think that the clarity, if you will, that came from the diagnosis of Lyme disease came with it some questions and certainly some unknowns. We still don't really know how she got it, but she has engaged a collection of-of therapists and treatment that are helping to support her in the knowledge of her health and the health of those around her. So, she's getting better.