Lyme Disease Support Group

By WBUR NewsroomJune 26, 2012

Part of a special WBUR series

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: 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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Showing 5 of 152 comments

Dede C.

Hi and thank you. It does bring back the emotional pain of the suffering from chronic Lyme to look back. I suffered for many many years with it and three of my four children also had it because of it being given thru the placenta.

My experience is similar and different in ways. We are down here in Georgia. It was a harrowing experience. We are all Lyme free now, but I am still recovering from the havoc is did on my body.

Bgyray111975

Everyone should read this.....

Tammy Asher, Unprecedented Antitrust Investigation into the Lyme Disease Treatment Guidelines Development Process, 46 Gonz. L. Rev. 117 (2011).

Especially Dr. Alex ...

Wendy Thomas

thanks for posting that. Very interesting read.

in reply to Bgyray111975

Oakridge

This is an accurate story, but fortunately, most people are treated before this point and unfortunately, most people don't believe it unless they've experience it. Therein lies the horror of lyme.

Amy

Loved your Beautiful music and wish you good health!! Would you ever consider playing at a Lymefest in Maine???

http://www.wbur.org/2012/06/29/tick-borne-diseases

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Post edited by: Bettyg, at: 06/30/2012 12:59 AM

By Steve Brown June 29, 2012

Lyme disease isn’t the only illness carried by ticks in Massachusetts. There are two other tick-borne diseases causing increased concern.

They are Babesiosis and Anaplasmosis, and scientists on Cape Cod and the Islands are tracking them closely — collecting ticks for analysis.

“Ooh! We have activity. Ooh. This is scary,” said Cape Cod Cooperative Extension entomologist Larry Dapsis as he dragged a pole with a white cloth on the end through leaf litter, weeds, and grass along a wooded trail in Brewster recently.

“That is a male deer tick, adult, a female adult. We have a little nymph, which is the size of a poppy seed, that bites,” Dapsis said as he pointed out ticks on the collection cloth.

WBUR’s Steve Brown caught up with Dapsis again this week in Buzzards Bay, to talk to him about the emerging tick borne diseases — first, Babesiosis, which can cause serious illness and occasionally be fatal.

Larry Dapsis: Actually, Babesiosis is really kind of a form of malaria.

It’s a parasite that invades your red blood cells. And so some of the symptomology of Babesiosis is fever, chills, anemia, things like that.

It has our attention because Babesiosis and Anaplasmosis are both increasing in Massachusetts.

They’re far lower than Lyme at this point.

But of note, over half the cases in the state of Babesiosis occur on the Cape and Islands. The other thing that we point out to people is that you can have co-infection, meaning that these ticks can carry more than one pathogen.

In fact, with these nymph stage ticks that are basically the size of a poppy seed, in our research, we find that upwards of 15 percent of these ticks can be carrying Lyme plus one of these other two pathogens.

Steve Brown: We’re doing this interview right now not too far from the Cape Cod Canal, on the mainland side of the Cape Cod Canal. You say that the Cape and the Islands are ripe for these diseases.

Can we consider the canal a barrier of some sorts? Is that keeping it on that side — over on the other side — and should we be concerned that it is going to spread here into southeastern Massachusetts and the rest of the state?

Larry Dapsis, entomologist for Barnstable County (Steve Brown/WBUR)

Well, ticks don’t swim across the canal. That’s a fact. But one of the ways ticks disperse is on birds.

So ticks that are infected with these other two pathogens can easily be brought over here and then infect the host reservoir population, which we think is mice and other small rodents.

Tell me exactly what it is you do when you go out in the field.

We’re working with a particular device to feed deer and try and kill the ticks on the deer before they lay eggs, and things like that.

But as part of this project, we have 14 different sites on the Cape and the Islands for surveillance. So it gives us the opportunity to look at distribution of these diseases in the tick population.

We send those ticks then to UMass Amherst and they analyze them. And what we’re looking at right now is how these pathogens differ from site to site and year to year.

The headline on this is that these pathogens are more widely distributed than previously thought.

Are there hot spots in other parts of the state for these other diseases?

Anaplasmosis is kind of interesting in that regard, in that what really jumps off the page is Berkshire County in the southwestern part of the state. So while there are other reportable cases in other counties around the state, Berkshire County kind of pops.

We are in a wooded area right now. Where is a tick going to get on me?

As you look around, we are in perfect tick habitat. It’s shady, woods, higher humidity. Ticks don’t fly, they don’t jump, they don’t fall out of trees.

These nymph stage ticks are really found in the leaf litter, so the first point of attachment is likely to be your footwear.

And then they would crawl up until they find a spot that they choose to settle down and feed.

Talk about some ways that you can prevent getting a tick.

In terms of personal protection, there’s kind of a laundry list of things for people to consider.

As you are, wearing light-colored clothing, long pants. It’s recommended that you can tuck those pants into your socks.

If I were wearing socks.

If you were wearing socks. But I haven’t actually seen many people make that bold fashion statement on the Cape. Certainly when you come in from outdoors, tick check. It is mandatory.

It’s recommended you take your clothes and throw them in the dryer for, say, twenty minutes.

When ticks are exposed to high temperatures and low humidity, it kind of changes their attitude about biting.

The thing I tell people to consider, especially on their footwear and their trousers, is to use a repellant spray based on a chemical called Permethrin.

Probably the silver lining in this whole thing is that tick-borne diseases are entirely preventable.

How can people find that right balance — be able to enjoy being outdoors, but prevent getting a tick-borne illness?

What I emphasize to people is don’t fear your environment. You should enjoy the outdoors. But understand your environment.

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Alexander DavisCollapse

The June 21 New England Journal of Medicine features a review article on babesiosis, another disease carried by the deer tick, which can be fatal and in some areas in southern New England is now almost as common

as Lyme disease.

The article states that the spread of this disease has been fueled by the expansion of the deer population, thus “elimination of deer populations sharply reduces the risk of infection but is difficult to implement.”

Certainly animal rights groups oppose deer herd thinning and point out that the mouse is the source of the bacteria.

This is true but only immature forms of ticks can feed on mice:

adult ticks will not feed on rodents because they need blood from larger

mammals.

Without eggs from the adult ticks, there are no immature tick forms.

Thus on Monhegan Island, Lyme disease was successfully controlled by eliminating the deer, and this broke the tick cycle. The mice are still there.

Also, CT expert Dr. Kirby Stafford writes that it is doubtful that after deer removal the deer tick can be maintained on medium sized hosts like raccoons, which frequently remove ticks by grooming.

In Bridgeport CT, lowering the deer population 74% resulted in a 92% decrease in nymphal deer ticks. In Groton CT the deer population was reduced from 77 per square mile to 10 per square mile, and the Lyme Disease incidence decreased by 83%. 7 hours ago 1 Like F

http://www.wbur.org/2012/06/29/tick-borne-diseases

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BOSTON — On Memorial Day weekend, 15-year-old Zachary Tenreiro ran back and forth to the beach through tall grass around his grandmother’s house in Wareham. Three weeks later, Zachary’s legs hang limply off an exam table as his pediatrician, Jennifer Hyde at Westwood-Mansfield Pediatrics, takes notes.

“So can you tell me when the fever started?” Hyde asks, looking up from her keyboard.

“Last night,” Zachary mumbles. He’s groggy after a near sleepless night when his fever hit 104.6.

“Did you have any cold symptoms or anything before the fever started?” Hyde asks as she moves quickly through the checklist of symptoms Zachary does not have: no congestion, vomiting or diarrhea. He’s not achy and does not have a stiff neck.

Zachary Tenreiro with his mother Maria Tenreiro and her red “boys medical” binder. (Martha Bebinger/WBUR)

“Do you live in any area where there are deer or ticks?” Hyde says, switching tactics. Zachary’s mother Maria Tenriero jumps in.

“We were down on the Cape where there’s deer and ticks,” Maria says, adding that the family always checks for ticks.

“But no tick bites that you noticed?” Hyde wonders.

Maria shakes her head. “I don’t think to check the hair because he’s got so much hair. I don’t even know if I’d see it?”

Zachary hadn’t notice a tick or a rash. Hyde tells Zachary he could just have a virus, “but typically, if we have fever and headache, not very strong cold symptoms, we usually do look for the Lyme, especially if you were somewhere where there were ticks.”

“And my other son found a tick on his sock,” Maria offers.

Hyde sends Zachary for a blood test. If he has Lyme, his blood work should show that he’s producing antibodies.

Tests for Lyme don’t detect the disease itself. They look for Lyme antibodies, proof that the body is or has been fighting the disease. A few hours before Zachary came in, Hyde had a patient with the telltale bulls-eye rash. She put that boy on antibiotics without ordering a Lyme test.

“There’s no point in testing because the test is unreliable,” Hyde explains. “The Lyme antibodies haven’t formed yet, it’s too early.”

But Hyde says that for Zachary, the test makes sense.

“With fever this high your body is making lots of anti-Lyme antibodies and it should be there,” she says.

That’s if Zachary has Lyme. Hyde offers to start antibiotics right away but Zachary’s mother declines.

“I get very nervous about antibiotics,” Maria says. “We don’t use them unless we absolutely have to.”

Maria says she’ll fill the prescription if Zachary’s test is positive.

“And if it’s gonna be present, it will, right?” Maria asks. “There’s no way to miss it through blood?”

The answer to that important question is complicated. It depends on when you get the test, says Dr. Philip Molloy, the medical director at Imugen, a Norwood lab that specializes in testing for tick-borne diseases.

“You can’t miss it when it’s late,” Molloy says, but “in the first weeks you can be fooled.”

Molloy, who is also a rheumatologist, says doctors can be fooled for up to two months after a patient is infected with Lyme because some antibodies show up right away and others take longer to respond to a bacteria, such as Lyme.

“It’s not a reflection of a poor blood test,” Molloy says. “It’s a reflection of, you haven’t made antibodies yet. You can’t find what isn’t there. Your body’s immune system takes a week or two to digest this germ and activate its immune system and produce the antibodies that are diagnostic.”

Testing for Lyme is a two-step process. The second test, known as the western blot, may be negative even once a patient has a fever or headache if the patient’s antibodies are slow to respond. So Molloy and several infectious disease doctors interviewed for this story recommend retesting patients whose symptoms persist.

The western blot test produces a strip that Molloy says looks kind of like a bar code.

“So there are some weak positives here,” Molloy says while looking at western blot strips. “This test, and this test, can only be interpreted in the context of a patient and their EIA results.”

Dr. Philip Molloy reviews a western blot test at Imugen, a lab in Norwood. (Martha Bebinger/WBUR)

The EIA is the first of the two-part test for Lyme. Molloy slips into the medical language that many patients with Lyme learn to speak. His point in looking at these strips with some strong dark bands and some bands that are a faint grey is that knowing when to test for Lyme and how to balance test results against a patient’s symptoms can be tricky for doctors.

“There’s room for being led astray or being confused and there’s so much a paranoia from my patient’s who spend time on the Internet that they sometimes just throw their hat in the air and say, ‘I want treatment,’ ” Molloy says with some frustration in his voice.

Some patients who are sure they have Lyme even though their tests continue to come back negative seek out what they call “Lyme-friendly” labs. These labs don’t follow mainstream medical diagnostic standards, but patients say they detect Lyme that mainstream labs miss.

Several patients we spoke to for this series directed us to Nick Harris at IGeneX in California.

Harris says it’s wrong to suggest that he diagnoses Lyme; that’s the role of a doctor. But Harris says he can help patients because “most labs are looking for early Lyme. Our testing goes further and looks at patients infected maybe years before, so it’s a criteria difference.”

One patient, who says he got very sick before getting a clear diagnosis, is hoping for an entrepreneurial solution.

David Roth, a real estate executive in New York and co-chairman of the Tick-Borne Disease Alliance Board, has put $50,000 of his own money into a partnership with the nonprofit X PRIZE Foundation, to help fund a competition for an early stage Lyme test.

The organization that would decide what test to recommend doctors use, the Infectious Diseases Society of America, says it supports development of new tests and would review the results but stresses that current tests are accurate.

Zachary Tenreiro is still sick. His fever just broke Thursday, seven days after it spiked at 104.6.

He developed a full body rash and the headaches continue. Zachary’s Lyme test was negative, so Hyde ordered tests for two other serious tick-borne diseases:

babesiosis and anaplasmosis as well as mono and a few other possibilities. Hyde and the Tenreiros are waiting for the results.

Showing 5 of 16 comments

shobud

Drs Sam Donta, Brian Fallon, Richard Jacobs, and Matthew Liang discussed challenges for clinicians in the diagnosis of and the management of tick-borne diseases.

Dr Donta is notable for being the dissenting voice on the contested IDSA guidelines. His insistence that those guidelines include chronic lyme led to his exclusion from the panel so that they could achieve "concensus".

Dr Fallon is from the Columbia University Lyme and Tick-Borne Diseases Research Center, which as some have posted previously is a possible resource for patients trying to make sense of this morass.

Dr Jacobs speaks about pediatric manifestations of Lyme and what it means to have a chronic case in a child.

Dr. Liang lives up to Osler by saying his gold standard is what the patient tells him. Beyond that, during the question and answer segment he delivers the simplest and best colloquial assessment of where we currently stand that I have seen from a respected physician. When asked about the effectiveness of current diagnostic strategies for late stage lyme he replied "they suck". (56:10)

Sometimes the answer really is that simple.

http://vimeo.com/24748049

KMDickson

The falsified testing for Lyme is nothing more than classic research fraud. "Lyme Disease," they claim (the disease definition was falsified at the 1994 Dearborn, MI, conference), is "only an autoimmune arthritis in a knee,"... because the real name of the disease is Lyme Relapsing Fever or Lyme Borreliosis.

The nature of the relapse is antigenic variation, meaning vaccines and test kits are a ridiculous idea. The controversy is research fraud or a homicide charge.

Yale owns a scientifically valid way to detect Lyme which is 94.4% accurate and 100% specific (US Patent No. 5,618,533) but they did not use this test to qualify LYMErix, because they knew LYMErix did not prevent Lyme.

See more at http://www.actionlyme.org/inde...

Solasdesigns

I have gone thru misdiagnosis for many years because of a mainstream american medical community that won't look at Lyme or tells you that you are cured after a short course of antibiotics.

I do not have MS, ALS, Parkinson's, Fibro, or Lupus. Those diseases that every doctor I went to diagnosed me with.

I have been living with this for more than 5 years and I am now in late stage chronic lyme that has settled in my central nervous system.

The sad part is that I was bit during the 12 years I lived in NY's Mid-Hudson Valley & my NEW YORK doctor missed it.

Alexander Davis

Given the fact that this disease is spreading so fast and that many people are missing the important early treatment, one wonders why there is not a greater effort to reverse the deer epidemic which brought us this plague.

Dr. Thomas Mather, a panelist on yesterday's program, pointed out that deer now look in his window at home.

He calculated that ticks dropped off from each deer/year produce 450,000 eggs.

These develop into the larvae and then poppy-seed-size nymphs which feed on mice or us. Most people are infected by nymphs and thus not noticed. Getting rid of the deer breaks this cycle.

KMDickson

Agree. The deer are the problem and not mice.

http://www.wbur.org/2012/06/29/diagnosing-lyme-disease

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By Bob Oakes and Kathleen McNerneyJune 29, 2012

BOSTON —

Controversy still exists over the long-term diagnosis and treatment of Lyme disease. A small group of doctors and some sufferers say that long-term symptoms such as headache, fatigue and pain stem from an ongoing infection from Lyme bacteria that can persist even after antibiotics.

They say that Lyme disease itself can be “chronic.”

However, many doctors and researchers in mainstream medicine reject the theory that the bacteria can persist. They agree that Lyme disease can have long-term effects, but blame lingering damage rather than active bacteria.

Dr. Mark Drapkin is one of those doctors. He is the associate chief of the Division of Infectious Diseases at Newton-Wellesley Hospital and a professor at Tufts University School of Medicine. He spoke with Morning Edition host Bob Oakes about the issue.

Dr. Mark Drapkin: After treating an infection and eradicating the organism, there can be a period during which the person still feels ill, during which various manifestations can occur.

They can be immune kind of manifestations, for example a joint might still suffer the pain and swelling that may have accompanied the original infective arthritis.

But now that is a damaged joint and the damage has a life of its own. But that does not necessarily imply that the bug is still there and that the problem is that the organism itself has not been eradicated.

Bob Oakes: Let me get you to respond to something said by another doctor, a specialist in Lyme.

He’s Dr. Daniel Cameron, an internist based in Mount Kisco, N.Y., former president of the International Lyme and Associated Diseases Society.

He says there needs to be an acknowledgement that people are suffering for months or years after being diagnosed with Lyme.

And he also thinks that there should be a serious look by the medical establishment at some alternative strategies, such as long-term antibiotic treatment for patients:

I’ve been successful for over 20 years in practice at taking these complex patients and getting them better.

I just need the research community to take these strategies and work with them.

Why has it been so hard to get the research community to dig deeper into treatments that some patients and some doctors say are working for patients?

Well, there have been some attempts to do that. With all due respect to the physician whom you have just quoted, when a person says, “I’ve been doing this for 20 years and it works,”

I don’t listen very carefully because that’s not a research statement.

These antibiotics are not benign.

And I can match anecdote for anecdote if people have done well with antibiotics, they come to me when they have not done well with the antibiotics.

But you and I both know there are people on the other end of the radio who are suffering from Lyme who are going to say, “Well you know, I have a doctor who gives me antibiotic treatments and I feel that I’m doing much better with them.”

I sympathize with that person. I can’t argue with a person who feels better and I’m glad that the person’s feeling better.

But does that mean that that person would feel any better or any worse if that individual received a placebo? I don’t know unless there is a trial that tells me that. I’m a physician.

I’ve been in practice for 40 years now.

Do I ever use drugs in ways that are not completely justified by medical science? Of course. We have to do things for patients sometimes that are not bolstered by excellent science.

We know that. But with respect to Lyme disease, I would just ask that the same standards of testing, of investigation be applied to Lyme disease as are applied to any other infectious or other disease.

In a way we’re talking about, or maybe around, the story of Barbara MacLeod, a former reporter for New England Cable News who says she’s been battling Lyme disease for more than 20 years. She gives this assessment:

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.

So what do you say to someone like Barbara MacLeod, who has had great difficulty with Lyme disease for a couple of decades and has had trouble getting treatment for it?

Well, I hesitate to comment on a particular person’s illness.

Because you haven’t examined that person?

I haven’t examined the person. I haven’t gone over the medical record. I think it would be wrong for me to make any snap judgements about a particular individual’s diagnosis or treatment.

So what would you say to a person who’s feeling the symptoms — fatigue, headache, pain — and can’t find any answer?

I will be open-minded and I will not comment on an individual’s diagnosis until I have the data: t

he face-to-face talk time, the physical examination, the review of all prior laboratory testing.

Those same symptoms could be early HIV infection. I would wonder has the person been HIV tested.

Those same symptoms could be those of Lupus. I would wonder if that disease had been considered in the differential diagnosis. There are many, many instances where people have come to me thinking that they had one entity, and it turns out they have something else entirely.

Is it [in] some ways more difficult to treat patients because they come in with this preconceived notion that they think they have Lyme disease, because there’s so much information available about what many people call “chronic” Lyme disease, or others call “post-Lyme” disease syndrome?

Once you latch on to a diagnosis, it can be very hard to disabuse you of that notion.

And if a patient has a list of symptoms and then sort of looks around and says, “OK, what matches my list?”

And then starts looking for other lists and you come across a Lyme website, for example, that lists all of those symptoms, you say, “Oh my God. That’s me. That’s me.

And that’s just what I’ve been experiencing.” And latches onto that diagnosis. It does cause difficulty. It does cause difficulty, because I am trying to look at this patient from a broader perspective and to try to keep my mind open.

How much more difficult it is for a patient to keep his or her mind open when that person has recognized what seems to be a list of symptoms that matches his or hers exactly.

Showing 5 of 20 comments

Joan of Arc

http://lymedisease.org/news/ly...

Joan of Arc

Dr. Yost's powerful testimony...Check out this video on YouTube:

http://www.youtube.com/watch?v...

shobud

Let's hear from a Dr on the ground in PA, another endemic area. This is a very different take on the reality of this disease and the effectiveness of short vs long term antibiotic treatment.

http://www.youtube.com/watch?v...

NikiV

I was fortunate to have been recently treated for Babesiosis by Dr. Drapkin, and I can tell listeners that he is one of the most compassionate doctors I have ever been treated by.

He squeezed me into his schedule at the very last minute, because he did not want me to wait even an extra day (my PC made the initial diagnosis, but because Babesiosis isn't that common, wanted me seen by in ID specialist; my symptoms weren't horribly severe, but definitely serious).

He spent over an hour with me, took the most detailed history imaginable, examined me, was kind and wanted me to understand all the factors of the disease.

Before I left, he insisted on giving me his cell phone #, so that if, over the upcoming weekend, I didn't feel well, I could contact him. Not many doctors of that caliber around anymore. He has contacted me since my exam to see how I've been doing.

So: yes, on the radio, any doctor would hesitate to offer any diagnostic help. However, he and his colleagues are doing wonderful work at Newton-Wellesley, and he is a very, very smart, thoughtful, thorough, experienced doctor, who, in fact, listens very actively and very well.

http://www.wbur.org/2012/06/29/lyme-science-controversy

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By Carey Goldberg

June 28, 2012

The Blacklegged tick, commonly referred to as the deer tick, is prevalent in Massachusetts. (AP)

“If you ask anyone in the state of Massachusetts,” said state Rep. David Linsky, “they know someone who has had Lyme disease, either in their family or someone that they’re close with. It’s a huge problem in Massachusetts.”

But exactly how big is huge? How much Lyme disease is there in Massachusetts? And where?

Here’s the official number:

Dr. Catherine Brown of the Massachusetts Department of Public Health said there are 2,000 to 4,000 confirmed cases of Lyme disease in the state each year.

“We consider Lyme disease to be endemic across Massachusetts,” Brown said. “It’s found everywhere.

Among the infectious diseases that are tracked in Massachusetts, only the hepatitis viruses and the sexually transmitted diseases have more cases than Lyme disease.”

But Brown said the official number of cases doesn’t fully capture reality.

“Among the infectious diseases that are tracked in Massachusetts, only the hepatitis viruses and sexually transmitted diseases have more cases than Lyme disease.”

–Dr. Catherine Brown,

Mass. Dept. of Health

“We receive every year between 12,000 and 14,000 lab reports on Massachusetts residents where they’ve tested positive for Lyme disease,” she said.

“That gives a better idea of the actual numbers of the burden of Lyme disease than when I tell you we’re able to confirm 2,000 to 4,000 of those cases.”

Brown said an officially confirmed case is one with both a positive lab test and symptoms, like the telltale “bull’s-eye” rash, documented by a doctor. But many patients who are diagnosed with Lyme disease never get a lab test. And nobody knows exactly how many of those patients there are.

Take Martha’s Vineyard, for example:

In 2010, there were only 25 officially confirmed cases. But a survey of island pharmacies by a team of University of Massachusetts students indicated that over 1,000 prescriptions for antibiotics were filled to treat Lyme disease that year.

Professor Sam Telford of Tufts University, a leading researcher on tick-borne diseases, said that in coastal Massachusetts, in general, about one in 100 people will get Lyme disease each year.

Click to enlarge: This map was released by the Yale School of Public Health in February. (AP)

In the rest of the state, he said, “That is changing. In the MetroWest 495-128 corridor, five or 10 years ago I would have said it’s only endemic with a few hot spots. Now it is approaching prevalence such as what we see on Cape Cod or the Islands.”

Telford said that in some hot spots, three to five out of every 100 people have caught Lyme disease in a year.

“But this is not uniformly spread across Massachusetts,” he said. “It’s in very selected sites, and those sites may change from year to year, depending on the local conditions.”

A year ago, the state Legislature created a special commission to study the incidence and impact of Lyme disease. One of its first orders of business is to get a better sense of how common the disease is in the commonwealth, and it’s taking a hard look at how new cases are being reported.

Before 2011, each town’s Board of Health was responsible for reporting cases of Lyme disease to the state. Then, the Department of Public Health shifted that responsibility to doctors.

“That’s probably where most of the under-reporting occurs,” Brown said. She said that when doctors diagnose Lyme disease without a lab test, they may not remember to report those cases to the state.

“And we’re certainly doing some outreach with some of our physicians to help understand ways that we can make that easier for them,” she said.

“The biggest problem, I’ve found for years, is that the doctors are so busy during the summer, they don’t have the time to look around, make a phone call, fax in a form,” Telford said.

In this photo released by the Centers for Disease Control and Prevention, the rash in the pattern of a “bull’s-eye” manifested at the site of a tick bite. (AP)

Telford is a member of the new Lyme Disease Commission.

He said the commission is developing a menu of ways to improve reporting. One they plan to test soon is a pad of Lyme disease reporting teleforms that can sit on a doctor’s desk, like a prescription pad, all ready to be filled out and faxed to the state.

Bill Hanage, an associate professor of epidemiology at Harvard’s School of Public Health, said it’s critical for the state to know both the prevalence of Lyme disease — how many people have had it — and also the incidence: how many new infections there are, to project the future trend.

“To really frame a response, to get an idea of what the threat is, to be able to apportion scarce funds, and also to be able to communicate risk to the public, it’s important to know just what the burden of the disease is,” Hanage said. And one more reason: “It’s very important in terms of feedback for interventions.”

Right now, you might be wondering whether you’re about to step into a Lyme disease hot spot when you go outdoors, and whether you need to take measures like using insect repellent and checking for ticks. Telford has this suggestion:

“You assume that you have ticks in your yard, and you act accordingly to prevent.”

Readers, you’re invited to attend a panel discussion on June 28 on preventing and coping with Lyme disease, moderated by CommonHealth co-host Carey Goldberg.

On Friday, our series, “Living with Lyme,” continues with a report on how doctors diagnose Lyme disease, and a discussion of the controversy over its long-term effects.

Showing 5 of 13 comments

Lymeticktest

I own and operate MassDeerService, Inc. We are now distributing the first at-home test kits for determing if the tick that just bit you is carrying the bacteria that cause Lyme. ]

Please visit www.lymeticktest for more info.

Alexander Davis

Thank you for your deer removal service. As stated at yesterday's panel discussion, deer ticks from one deer/year can produce 450,000 eggs! That's a lot of potential Lyme victims.

In 1930 there were 300,000 deer in the US and now there are 30 million. The epidemic of deer has caused the epidemic of Lyme.

Dr_Alex

As I understrand this is not the place for advertisement. Please, provide data that your claim is true. in reply to Lymeticktest

Kmrlynch

LIZ, YOU ARE VERY LUCKY YOU THAT YOU DON'T HAVE TO STATE THAT YOU DO NOT TEST "POSITIVE" FOR LYME....

Liz

The lab test does not indicate Lyme DISEASE. It tests for the presence of antibodies in a person's blood, evidence that they have been EXPOSED to the microbe and mounted an immune response.

I would test "positive" for chicken pox because I had it once. I would also test "positive" for Hepatitis B because I had the vaccine.

The term "disease" properly refers to people with clinical manifestations of the illness. Many who test positive are perfectly healthy.

This may seem like a small distinction but we shouldn't be calling people sick who aren't.

http://www.wbur.org/2012/06/28/lyme-prevalence

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