A Long, Painful Battle With Lyme Disease

Part of a special WBUR series

Barbara MacLeod, a former anchor and reporter for New England Cable News, has lived with Lyme disease and the damage it causes since 1988. Her journey has been harrowing and painful. She shares it with us.

Barbara MacLeod: So it all started when I was about 25 years old. And I started suffering from strange symptoms: pain, fatigue, stuff I couldn’t put my finger on. I was having trouble sitting, and I was having shoulder problems that would wake me up at night, every night. And I had just taken a job as an anchor, the main anchor, at a small cable station on Cape Cod, called Cape 11.

I had been there for about a year when I started having all these health problems. I would go to these doctors to try to figure out what the specific symptoms were. For my shoulder pain I was going to an orthopedic person, who would look at my shoulders and thought maybe it was overuse from tennis or racquetball, so maybe I had some type of arthritis with the knee pain; I had a bad knee from ski-racing.

And so my aunt, who lived in Lyme, Conn., she would say to me, every year when she would see me, “You’ve got Lyme disease, you have Lyme disease.” And she had Lyme disease and what happens is, whenever anybody has Lyme disease they then think everybody else has it. So I didn’t discount it, but I would always mention it to the doctors, that I thought that I might have Lyme disease, but nobody seemed to take it seriously. I did have one blood test done that came back negative, and then it was just on this path of “You don’t have Lyme disease.” So it was, “What do you have?”

"I would always mention it to the doctors, that I thought that I might have Lyme disease, but nobody seemed to take it seriously."

Nancy MacLeod (mother): As parents, you hate to see your kids — something getting in the way of them getting what they want and what they’re capable of doing.

John MacLeod (father): Oh, it was just, it was a shame, that a good athlete and a healthy lady was just struggling.

Barbara MacLeod: I finally went to this really well-known specialist, orthopedic specialist, at New England Baptist [Hospital], and he was a lovely guy, and he told me that he thought I had iliotibial band syndrome, and bursitis, and so he would give me shots of cortisone, and he said, “If these improve your condition, if you’re feeling much better, then this is probably what it is.” I did improve, and so he said, “OK, well, we will do this bilateral hip surgery.” So he took out my bursa sacs and cut holes in my iliotibial bands in both hips.

I was so hopeful that this was going to cure me, and he had indicated that he thought that that was really what the problem was, and he was such a renowned doctor. I always said all along, “I’m afraid I have Lyme disease, I think that’s what I have," but he discounted it.

John MacLeod: And the next day, when we went and visited, and the tears are streaming down your face, and after two five-inch scars on each hip, and you saying, “The pain’s still there.” So that was, that was heartrending. Terrible.

Barbara MacLeod: And then I basically became a cortisone addict, and it always helped. And so every three months I would get these massive doses of cortisone. This literally went on for six, seven years. At this point, I knew I was getting worse. I was having all kinds of bizarre symptoms. I wouldn’t even tell the doctors half of them because I sounded like such a psycho, between light sensitivity and ringing in my ears and just pain, migrating pain through my wrists, knees, shoulders and hips, and I started this new job at NECN that I loved.

I went from working five days a week to three days a week. But it was the days after working that I would pretty much fall apart at home. I was just at the end of my rope. At NECN I then started to see if I could anchor more, so that I could work off hours.

When I would drive on [Route] 128 — and this is just horrible — but I used to put my legs up on the dashboard and put it on cruise control. And if I was working off hours, it wasn’t that bad, there weren’t many people on the road, but that’s basically how I did my commute. And it’s really amazing that I didn’t kill anybody, or myself. But I would have these visions of like, “Oh my God, if I just pull over, and smash into this tree, then this is all going to be done, and I won’t have to feel this way anymore.” And that’s when I thought, like, I need some serious help here. So I went to this pain clinic in New York, and I literally couldn’t stop crying. I was really low and I felt like they were my last hope.

And I remember, like, having it out with them and then they finally listened. I showed them all my research, that I thought that there was something systemic, that it wasn’t just myofascial pain syndrome or a back problem or this or that, and they sent me to a good doctor in New York, who sent my blood work to Stony Brook Lab, where they did more thorough blood tests for Lyme, and within a day, two days later, it came back positive, and I thought that was going to be the beginning of the end, but really it just ended up being the beginning of the next phase.

I started going to Lyme conferences to try and find out who were the best doctors. And of course I found out but then I couldn’t get in to see them, because they were completely booked. And so I found this one doctor, her name was Dr. Fine, and she was in New Jersey, so I started having to travel to New Jersey for my doctor appointments. But she did a thorough workup, which showed liver damage, heart block. We did a brain SPECT scan and an MRI which showed significant, you know, neurological damage from Lyme disease. And then we started the whole antibiotic protocol of IV antibiotics. So I would have, I had a pick line put in, and had a drip of antibiotics that I would have to do.

Beth Kidwell (longtime Cape 11, NECN co-worker): You walked around the newsroom like a hospital ward with your pole with the bag hanging down.

I also remember trying to look for you, and no one knew where you were, and I went into the conference room and you were laying on the floor, with a pillow, with the IV pull there, and that’s what you had to do to just get through an eight-hour shift, to take those breaks and lay down flat because you couldn’t sit. You were pretty much almost a cripple at that point.

Barbara MacLeod: I remember a few times at work ... the neurological symptoms being pretty intense. And I remember a snowstorm and being at Logan Airport, and just talking about the snow conditions there and if the airport was shut down or not. And I could not come up with the word for “runway.” And I’m saying, “Well, the, um, that stretch that the planes go down is closed,” and then I hear a producer saying, “Are you talking about the runway?” in my ear. I’m like, “Yes, the runway.” I just felt like I was crazy.

Kristi Mathieson (friend): And you were also seriously considering having a family at the time. But you were also concerned whether or not the baby would be impacted in any way, shape or form.

Barbara MacLeod: The information I was getting from the Lyme specialists at that point was that that was quite possible, that Lyme can be passed through the placenta and that I should take that seriously. And I figured, at that point, with my luck, it would be just my luck, to then have a baby with birth defects because of Lyme disease.

So, I really wanted to have a baby, my husband really wanted to have a baby. And I went through this process of trying to find a gestational carrier. And this was way before — this was when there was Baby M and the surrogacy thing going on, but nobody else, really, was talking about it. It wasn’t common knowledge like it is now. I remember just one day just typing up an ad that I put in the paper. It said, “Womb Wanted.” I mean it’s really like, like a chapter out of a bad book but I put in the ad in a couple newspapers in New Hampshire and I got some response. The embryos didn’t take, which ultimately was a good thing because it probably wasn’t a good match, but it was very time-consuming, expensive to try to draw up a contract and to figure it all out and to go through the IVF cycles myself while I’m still undergoing antibiotic therapy and still working. I mean it was just an insane time.

Kristi Mathieson: When you’re sick, you need somebody to help you. It’s the time that you need it the most.

Barbara MacLeod: I had heard about how Flagyl worked for some people with long-term Lyme, and so I got another doctor to prescribe the antibiotic Flagyl for me and I went on Flagyl for three months. And that was when things turned for me. I got significantly better on the Flagyl and then I thought, "Whoa, OK, maybe I can try to get pregnant myself. And I did. So I had Ben, and then a couple years later I did IVF and I had twins. I was still working my two days a week, and now I had three kids, and I still had a lot of pain problems but I was much better, because when I would have these Lyme flare-ups, I would just go on the Flagyl and it would help.

All three of my children have been treated for Lyme — pulled ticks off them, they had the rashes and the fevers, so it was very clear and caught early on. My now-ex-husband, treated for Lyme disease. My mom, still being treated for Lyme disease.

OK, so I’m in my office now, in Kittery Point, and I’m going through some big boxes and files of old medical stuff, to try and jog my memory. One of them is a letter to my doctor in New Jersey and it’s dated Aug. 11, 1998.

“End of March was bad,” I write. “Ringing in ears, low energy, fatigue, right wrist sore, both shoulders painful, brain fog, trouble articulating.” I write: "By the end of March, my knees, shoulders were improving, some jaw, memory problems." And this goes on and on.

It’s hard to pinpoint what it is that makes me so sad when I read this. I guess I’ve been pretty good about looking forward and not looking back with all of this and it just called it all up. All the, just the uncertainty and physical and mental pain of it all. It makes me angry and I know a lot of people are going through what I went through. And I definitely felt very alone during that time and at a loss of how to get better.

This is one of those diseases where you don’t get it until you get it. And the small group of doctors who will treat aggressively, and who believe the patients, they usually have some personal experience with Lyme. Where they can’t believe that their mother, sister, daughter, son or themselves are suffering the way they are, and can’t get answers and can’t get treatment. And so they, they do their research and start figuring it out.

If you go to one of those other doctors, when in fact you do have long-term Lyme, or untreated Lyme, or misdiagnosed Lyme, it could be years and years before you figure things out.

This story was produced by WBUR's Martha Little.

Update: See here for reaction to MacLeod's experience, and to read about the ongoing debate over whether Lyme disease can be a chronic illness.