WBUR

A Long, Painful Battle With Lyme Disease

Part of a special WBUR series

Barbara MacLeod at her home in Kittery Point, Maine (Jesse Costa/WBUR)

Barbara MacLeod at her home in Kittery Point, Maine (Jesse Costa/WBUR)

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.

Beth Kidwell, editor at NECN, with MacLeod at a Gracie Awards ceremony in New York. (Courtesy)

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 with twin sons Rory, right, and Lane (Jesse Costa/WBUR)

Barbara MacLeod with twin sons Rory, right, and Lane (Jesse Costa/WBUR)

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.

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  • Kayjay210512

    ALL OF  YOU. CALL  DR. SCHACHTER AT THE SCACHTER CLINIC IN ROCKLAND AND GET SOME APEX…
    22 YEARS AND NOTHING WORKED,AND ITRIED EVERYTHING.
    APEX DID WONDERS.
    http://WWW.APEXUAP.COM
     OR CALL ME AT 845 225 2203
    JIM S

  • BeStrongCarryOn

    The best thing we (us suffering from Lyme) can do, is educate those who don’t know about this disease or dwell on inaccurate information provided by society. It’s admirable to post a story on such a controversial issue, when the negative feedback is almost guaranteed. The tests may show little evidence of chronic Lyme, but those of us who live this pain on a daily basis, know first hand. Being twenty years old, and unable to leave bed, or eat solids due to a feeding tube surgically implanted into my stomach is a difficult life to accept, but we wake up, and we go on, misunderstood and unappreciated. All the best luck to your recovery and road to happiness, for it will come with time. Love & good vibes.

  • Correnia Austin

    Your story is so common I’m afraid, I myself had been misdiagnosed in 2000, I was told I had stomach cancer to go home and put my affairs in order, from a doctor in Maine. I got a second opinion in New York and found it to be Lyme Disease, 41/2 years of antibiotics, a period of remission. Enough time to have IVF Egg Donor Twins, when a year or so ago I began having problems with Lyme Disease, local doctors were of no help so back to New York again. Only to find that I had Bartonella, a co infection of Lyme Disease and 4 viruses on board. Now I am on antibiotics and going back and forth to New York every three weeks for more testing and treatments. My heart is affected, so is my nervous system, having seizures again. I am having my Twins tested this friday. Not sure when things changed and just want to have them tested to get treatment if need be. There are days I’m so unsure of Tomorrow, but I battle on for the sake of others and hope someday there will be a cure for this debilitating disease.

  • Spirithorsetraining

    I relate SO much to this story… It was frustrating fighting with the doctors for YEARS – The worst was when I kept being told “Its all in your head.”!

    • Akers747

      i am going thru a flare up . ive been good for months and i dont know what to do

    • Rose Gauthier

      Thats how I feel. The doctors keep telling me its just anxiety causing these symptoms, but I told them I remember having the large round rash on my arm about 7 years ago. Nobody believes me and now the blood test cam back negative so I don’t know what to do!

  • Hernandez4312

    I  was lucky.  My doctor caught it early.  I don’t go in the woods ever! I leave near woods and ther are a lot of deer,  I was clearing leaves out of my driveway. There isn’t even any grass where I was picking leaves. I took a shower soon after and I got really hot and noticed I had hives for the first time ever.  i took an antihisstamine and it clearedup quickly. Four days later I felt like I got hit in the head with a hammer.  I have never had pain like that. The headache got b etter but it was still there two days later. I went to the E.R. my blood pressure was 200/119. They did a Cat Scan and I was told to go to my doctor cause I had high blood pressure. I went to a APRN and the tests began. I had blood test that showed my Thyroid levels were up and they adjusted my medication that I was already on. the headache didn’t go away. I had an ultrsoundof my spleen,liver,pancreas, and probaly more organs. i also had a Cardiogram. Two days later I was back in her office with a bad headache and 152/98 blood pressure.  She looked at the results and everything was fine. Both times I was in her office she would ask if was in wooded area. I would tell her I don’t go in the woods.  She looked over all the results of blood test I took the week before because she said she thought she checked for Lyme Disease.  There is wasin big red letters active!  I started to think and remember what happened 2 weeks prior and asked if it was possible i got bit that way? I told I didnt feel or see a tick. She feels that when I showered the tick fell off and the fact that I took an antisstimine right after may of been why I didn’t get the rash.  I thought i was having a stroke.  I’m usually a strong person but I was falling apart everytime I was alone and finally had a meltdown at work. i am currently on antibiotics and on bedrest and I am already feeling better.Don’t think it is not possible to get Lyme Disease. i am proof that anyone can get it.

  • Amyjo1989

    Thank you for this story. I was just diagnosed last week and I think I have had it for a long time. I have had chronic pain for quite some time. I was due to have another back surgery because they thought my knee pain was caused from my back. I just started antibiotics and awaiting appointment with the infectious control doctor. I am still in shock over the diagnosis as I don’t remember a rash or a tick on me. Just glad that doctors no longer will think I am faking this pain.

  • Rose Gauthier

    I believe I have lyme disease, but
    the tests came back negative. The doctors say I have anxiety problems that are
    causing all my negative health symptoms.What is the best test to confirm lyme
    disease? Not sure what to do. I have gotten the tick rash about 7 or eight
    years ago. I thought it was a spider bite so I never told my doctor. Now I am
    suffering from headaches, nausea, neck pain and stiffness, hip pain, stomach
    pain and bloating, bone pain, muscle pain in arms and legs, extreme loss of
    memory, weakness in my legs, extreme tiredness, insomnia, ear pain and
    pressure, dizzyness, extreme unexplained anxiety… I am a 29 yr old woman with
    two kids. My hair is falling out in clumps. Please I need some hope.. Three
    doctors have told me its just anxiety and treated me like a hypocondriac
    instead of helping me. My current doctor ran some blood tests that came back
    negative and now she is testing for other things and aiming towards anxiety
    instead of focusing on more lyme disease testing. I am not sure what to do at
    this point….

    • Jeanne d’Arc

      Rose: I tried to respond to this yesterday but I dont see my reply posted so I will try again. A few thoughts:

      1. Testing for other things is a good idea in case you dont have lyme disease and in case you have other infections in addition to lyme disease.

      2. The commonly accepted tests for Lyme (ELISA and Western Blot) rely on the antigen-antibody response. An antigen is a protein on the surface of a bacteria. If your immune system is healthy it will “see” the antigens and produce antibodies to kill the bacteria. In people who have been sick for a long time, the immune system may not be working well and the tests may come back negative in people who have lyme. One common way this happens to people with lyme is that the infection gets in the endocrine system, which regulates your immune system You mention that your hair is falling out in clumps, which may be from hypothyroidism. Do you have pain in your back around your kidneys? This may be from adrenal insufficiency. Your pituitary is important to your endocrine and immune functioning, you should have this tested as well. If you have endocrine problems, you should get them treated and then retest for lyme. This happened to me. Ididn’t test positive until my endorine problems had been addressed.

      3. Another reason your lyme test may be negative is that you dont actually have lyme but have lyme co-infections. These are other infections that are carried by deer ticks. The symptoms overlap with lyme so it can be very difficult to figure out what is what. You should ask to be tested for coinfections such as Erlichosis, Bartonella and Babesia, Q fever, tularemia and filariae. A lab called IGenX in Palo Alto, CA tests for lyme and coinfections (tel. 800.832.3200).

      4. The predominant cause of lyme in the US is borreila bergdorferi. However, testing done by the University of Maine and a Canadian university in 1996 demonstrated that the so-called European species of lyme (borrelia afzalii and borrelia garenii) are being carried by ticks in the US. The CDC had not followed up on this research to determine whether and how many people in the US are being infected with these species and continues to claim that they dont exist in the US despite the 1996 study posted on their web site. You may test negative for lyme because you have the european species. Particularly if you were in Europe before you got sick you should get tested for this. I don’t know where you live, but an Asian species of borrelia has recently been identified in California. A lab in Wisconsin called Neuroimmunology Labs can test for the European species and lyme coinfections (tel 715.294.2852). I am not sure who might be testing for the Asian species.

      5. Before lyme disease was defined away (1994) doctors recognized that the pattern of response on the lab tests was different for chronic lyme (then called lyme relapsing fever) than for new cases. A positive Western Blot has five positive antibodies on the IgG or two on the IgM but chronic lyme antibodies come and go so testing needs to be done repeatedly over time. the antibodies will show up but not all at once.
      6. As you go forward you need to know that the politics of lyme are ugly and many doctors dont want to go near a complicated case of lyme even if they think you have lyme. You may need to fine a doctor who treats complicated cases of chronic lyme disease. The International Lyme and Related Diseases Association may be able to give you some names in your area. The best source of scientific information is the web site of the Center for Lyme and Tick Bornw Illness at Columbia Medical Center. They have good summaries of the latest studies and click thrus to the studies themselves. Columbia also has a second opinion program where they will assign a team of doctors to figure out how to handle complex cases, but the work out is paid for out of pocked and is quite expensive $5100).
      Lots of persistence is needed to diagnose and treat these complicated situations. Best of luck.

    • Caitlin’s Mom

      I have been taking my daughter to a Lyme Specialist in Newington NH that seems to be up to date on the latest tests and treatments. Her name is Dr. Nicole Schertell. She ordered a new test called the iSpot Lyme™ test that has been developed by NeuroScience Inc. that can measure the levels of Lyme in your system. It is much more accurate than the Western Blot. It would be a good place to start to see if you have Lyme disease.
      Good luck!

  • Barb R

    University of MD was doing some research on treating the infected deer herds. Our local herd in western Howard County, MD, is infected. UMD was theorizing that what would help the most would be for areas that are known as Lyme pockets to feed the local deer corn laced with antibiotics and this might greatly reduce the spread of the disease. I’ve had it twice. One of my kids has had it. One dog has had it. We have to be super-vigilant. I hate the idea of being exposed to it over and over but those of us in these Lyme pockets are always at risk. Wishing more research was going toward wiping it out at the source.

  • AgentLilJack

    The unfortunate thing is that I relish hearing stories from others. Its the only way to know that my misery is not insanity. I am fortunate enough to have have a Lyme MD move in next door. She has helped test, diagnose, treat and provide the comforting words that are so desperately needed during major flareups.

    Here’s what I can say to anyone who suffer: go from one doctor to another until you find one who listens. When they don’t, stop talking and just walk out – don’t pay, just walk. Then move to the next one.

    When you find the right doctor, you will know it right away – they will say everything right and describe your symptoms and discomfort in such a way that (at least to me) it sounds like poetry.

  • Melissa

    I am 18, 19 next month, I’ve had all the symptoms of lyme disease for the past year and I’ve went to doctor after doctor trying to find out what’s wrong with me, but I didn’t read about lyme disease until the past two weeks. The doctors all blow me off because I’m young. But I am NOT stupid. I know there is something wrong. My lymph nodes have been swollen, hard knots for a year! And I have NO energy, I’m in pain all the time and I’m way too young to feel like this for no reason. Right before it all started I was going hiking alot in the woods but I never had a Tick Bite. I’ve always had back problems, since I was little. I got in a car accident when I was four and got whiplash. Now my spine is actually twisted. But my shoulders never bothered me until after my lymph nodes swole up. I’m miserable and I’ve had thoughts so many times of “if I did this, it would all be over” I’ve had the problems with words more and more lately, the other day I was at the store and I read something 5 times and I was seeing it correctly but my mind thought it meant something totally different. I don’t even have health insurance and my mom has been taking me to regular doctors and they all just blow me off. I don’t know what to do I live in Tennessee, someone please give me some advice!

  • Rob Wilson

    I think the consensus is that you need treatment with antibiotics that treat the spirochaete form and the cyst (biofilm) forms simultaneously- otherwise you can’t eradicate the infection. You have to be aware that you might get a severe Herxheimer reaction -particularly starting a cyst buster like Metronidaxole. This can take the form of a high fever, headache, sudden lymph swelling, severe muscle aches and pains etc. This is evidence of the sudden death of some of the (previously untouched) cystic forms releasing endotoxins into the system.

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