Gather Baltimore

What they do: Collect unsold food from farmers’ markets, farms, and other sources for redistribution to local meal programs, faith communities, and others in need.

How to help: Volunteers always needed to help “glean” (aka collect) foodstuffs; donate to its Give Corps campaign to purchase freezers and refrigerators for its Remington warehouse, which will help increase capacity.

Contact: Visit in person at the JFX farmers’ market and Oliver Farm Stand (1400 N. Bond St.) every Sunday; gatherbaltimore.org.

Health Care for the Homeless

What they do: Provide health-related services, education, and advocacy to reduce the incidence and burdens of homelessness.

How to help: Donate online or by mail at Health Care for the Homeless, 421 Fallsway, Baltimore, MD, 21202; attend its annual fundraiser The HCH Chocolate Affair on February 15, 2014.

Contact: hchmd.org.

Maryland Food Bank

What they do: With three locations statewide, the Maryland Food Bank coordinates the procurement and distribution of food donations from manufacturers, wholesalers, retailers, and government agencies to organizations providing free food to the state’s hungry.

How to help: Donate money via website; virtual food drive via website allows donors to purchase in bulk the most-needed items; bring canned donations to Ravens Food & Funds Drive at M&T Bank Stadium on November 24; bring canned donations to or make a monetary donation at the register at participating Giant food stores through November; throughout November and December at participating Safeway locations buy pre-packaged bags of food to be delivered to those in need; donate food in person Mon.-Fri., 8:30 a.m.-2:30 p.m. at 2200 Halethorpe Farms Road, Baltimore, MD 21227; warehouse volunteers always needed to help sort and pack donations in 3-hour shifts Mon.-Sat. and Wed. evenings.

Contact: 410-737-8282 or mdfoodbank.org.

Jobs Housing Recovery

What they do: This all-male nonprofit offers a continuum of care that encompasses food and shelter, skills and job training, and substance-abuse treatment and counseling.

How to help: Always in need of warm clothing, including hats, scarves, men’s boots, coats, and jackets; volunteers needed to help with daily food service, holiday decorating, and activities; donations accepted through Paypal at jhrbaltimore.org.

Contact: 410-522-2232

Fuel Fund of Maryland

What they do: Provide resources to vulnerable Maryland families for heat and home utility needs.

How to help: Monetary donations can be submitted online through its website, via your monthly BGE bill, or via check at Fuel Fund of Maryland Inc.,
P.O. Box 62266, Baltimore, MD, 21264-2266. Also accepts gifts of stock.

Contact: 410-235-9080, fuelfundmaryland.org

Marian House

What they do: Waverly-based nonprofit offers high-quality rehabilitative services and housing to homeless women and their children.

How to help: Donations accepted through marianhouse.org or in person at 949 Gorsuch Ave., Baltimore, MD, 21218

Contact: Offers tours of the facility the first Friday of every month; for more information, call 410-467-4246 and ask to speak with advancement assistant Tamar Klein.

---

Overwhelmed and need help deciding where to begin? Do a search onvolunteermatch.org. Enter your preferences (location, subject matter, age, etc.) into the website and receive a list of area organizations looking for volunteers just like you!

There are many good and noble causes out there. But beware, all nonprofits aren’t created equal. To help you decide where to put your time, money, and effort, use Charity Navigator, an independent American nonprofit corporation that evaluates charities in the United States based on financial health, transparency, and accountability.charitynavigator.org.

Giving Tuesday is a new national campaign to promote charitable activities at the start of the holiday season. It’s designated for the Tuesday following Thanksgiving, Black Friday, and Cyber Monday—this year, December 3. More information atgivingtuesday.org.

Q: What are some of your favorite hometown memories?

A: My favorite memories were probably at the Roland Park pool. That was kind of my summer hangout. I lived off of Cold Spring Lane, so we would walk down to Sam’s Bagels and The Daily Grind. I went back about a year ago with my boyfriend, and all these memories came flooding back. I thought Roland Park Country School’s theater was the biggest I’d ever seen when I was in my middle-school productions. But it looked a lot smaller this time around.

Q: We hear you’re a big football fan.
A: I love the Ravens and every season, I’m like, “This is the year.” It’s always fun in L.A. because you don’t run into a lot of Marylanders. I was watching college basketball in a bar once and a man was wearing a Ravens jersey. We became best friends. I’m also the proud owner of a football from a Ravens game. It was a Christmas gift from a friend who plays for the Eagles [Jon Dorenbos]. My boyfriend asked if he could have the game ball signed by Steve McNair. The ball is dirty and deflated, but I love it.

Q: Most girls hate fantasy football, but you like it.
A: I’m completely addicted. It’s just so much fun and it gets so competitive. It’s kind of like gambling because you can look at the projections, but you can also go with your gut. In some of our closed circuit leagues, our friends would cheat and ask [Dorenbos] if Westbrook was playing that night. We get pretty cutthroat.

Q: The creator of Mad Men, Matthew Weiner, is from here as well.
A: It’s not just Matt—there are tons of people from Baltimore. When I wound up on that show, I was like, “This is where you’ve all been hiding.” Even in my audition, they loved the fact that I was from Baltimore. Baltimore is a big city, but it’s also small. It’s so cool to be able to cross-reference places back home with people on the set.

Q: Is playing Jane on Mad Men as fun is it looks?
A: I have an absolute blast. When I came on, I had no idea what would happen to the character. They keep you guessing, even the actors. I had no idea she was going to wind up marrying the boss [Roger Sterling]. I remember sitting at that table read and everyone was like, “What?”

Q: Do you get to keep any of the clothes?
A: Definitely not, but there have been times where I’m having one of those days, where I could really use my girdle. It’s uncomfortable, but it really makes you look so good.

On April 30, 1955, the eyes of the sporting world were on Worthington Farms in Glyndon, Maryland, as 20,000 spectators crowded the hillsides to see if veteran rider Sidney Watters Jr. could lead a horse named Marchized to its second straight victory in the 59th running of the Maryland Hunt Cup, the grandest tradition of local steeplechase racing.

Sports Illustrated, when it ran a feature on the steeplechase racing craze later that year, called the Hunt Cup “the world’s most difficult race to win,” and for good reason: The Hunt Cup’s four-mile distance is the longest in the nation, and its 22 fences—some measuring nearly 5 feet—are the tallest. The thirteenth post-and-rail has long been dubbed “Union Memorial,” after the hospital that has often treated riders whose horses fail to clear it. Finishing the decades-old course is victory enough for many.

Eight horses started the race on that day more than half a century ago. Gold Tar led before losing a shoe at the thirteenth jump. The eighteenth fence foiled the two favorites—Marchized over-jumped and hit the ground rolling, while Highest Award, ridden by the nation’s “leading timber rider,” according to The Washington Post, hit the fence and fell. In the end, despite clipping two fences, unheralded Land’s Corner won. News accounts of the time called him a “crazy-mixed-up” horse whose “psychiatric” problems left many doubting whether he could endure.

The Hunt Cup has been run every year since the memorable 1955 race—the 113th running takes place April 25—but Sports Illustrated has long since stopped paying attention. And they aren’t the only ones: In 2008, a considerably smaller crowd of 7,500 turned out for the Cup—the first in a generation in which all of the starters actually crossed the finish line. In fact, the only major news outlet to cover last year’s Hunt Cup was The Baltimore Sun, which buried a 474-word story on page four of the Sports section.

The same names continue to dominate the Cup: In 2008, Charles Fenwick III, the youngest in a storied line of Cup victors, won on Askim, a horse trained by his mother, Ann Stewart. The Stewarts have been involved in the race for 100 years. One of Fenwick’s rivals, Make Your Own, was trained by his father, Charles Fenwick Jr., a five-time Hunt Cup winner, and owned by Danielle Brewster, a member of one of at least ten families who have fielded three generations of Cup riders.

“The [Hunt Cup] contest continues to be very nearly what it was in the beginning: a race between local fox hunters and one dominated . . . by the same families who founded it,” Margaret Worrall writes in 100 Runnings of the Maryland Hunt Cup, one of many books written about the race.

If not for the dedication to the Cup by a core of committed families, the tradition-streaked race—open to amateurs for whom riding is an avocation, not a profession—would not have endured 115 years. But, given the expense, time, and danger involved in the competition, many of the younger generation are choosing not to race.

“For the sport, it’s a tough time,” says Jason Griswold, descendant of Alex. Brown & Sons’ founder and a third-generation competitor in the race. He said it’s up to the amateur riders to go through the effort of practicing, losing weight, and showing up to keep the sport thriving. “We keep it alive by showing up. But it gets tougher and tougher. Lives get more complicated.”

Charles Fenwick Sr., grandfather of the 2008 Cup winner and whose father raced in the 1909 Cup, worries whether it will be around in 20 years. He has been on the Hunt Cup committee for three decades and says real-estate demands will be the biggest pressure on the Hunt Cup families. As large plots of rural land continue to be subdivided and sold off, suburbia is creeping ever north from Baltimore and south from the Pennsylvania line, making it difficult for families to keep, train, and race horses.

“When I was young, you could buy a farm with a house on it for $100,000,” he says. “Now you’re talking about millions. I’m afraid it won’t last.”

That is why, Fenwick says, that all of the Hunt Cup participants and families are grateful to J.W.Y. Martin, owner of Worthington Farms, which became host in 1922. His father bought the farm in 1935, and he has no intention of selling it. “Ever since I have been alive, the race has been a part of my life,” says Martin, 69, who won the race in 1972. “It’s just something that gets in your blood. It’s such a difficult race to run.”

The Cup’s home is safe for now but, as with the entire Cup enterprise, much depends on the dedication of future generations. “I don’t see it changing until my children or my grandchildren own the place,” says Martin. “I don’t know what they’re going to do.”

In these tough economic times, there is another factor in the Cup’s favor: no corporate sponsors. It might be the Daytona 500 of steeplechasing events, but don’t expect to see horses and riders emblazoned with corporate emblems. The race, with its $75,000 purse, generates its revenues from advance sale of tickets and parking passes, says Shockey Gillet, an official with the Maryland Hunt Cup Association.

The race largely owes its financial fulcrum to its core of wealthy, recession-proof devotees, in particular, its nearly 600 “subscribers.” Getting a subscription—sort of like football’s Permanent Seat Licenses (PSL) and quite the hot commodity in racing circles—isn’t easy: It usually takes a death to open a spot. Fenwick stayed on the waiting list for 10 years. The number is not limited by any exclusive parameters (they cost less than $200), but by the physical limits of the subscribers’ parking area. Fail to pay your subscription and it is given to the next person on the waiting list.

Then there is the matter of having enough riders to run the race.

“There were years when we were worried about entries,” Gillet says. “I think there is always a concern that there’s a good quantity of riders of that caliber who can go over that course.”

Once again, it comes down to the passion of the core families, Gillet says, to ensure the future of the Cup.

That passion is clearly evident in the story of the Griswolds. Ben Griswold III rode in five Hunt Cups starting in 1936 but never won. His son, Jack “Jay” S. Griswold rode in more than a dozen Hunt Cups between 1960 and 1985, finishing second four times but never winning. In 1982 he lost to H. Turney McKnight in a thrilling photo finish and was devastated. His older brother, Ben IV, tried six times to no avail. Jay Griswold never won as a rider, but in 1996, a horse he owned, Hello Hal, finally took home the cup.

Now his son, Jason Griswold, 34, has taken up the cause. He finished fourth two years ago and fell a year before that. He plans to compete in the Hunt Cup for the third time this year. To do so, the younger Griswold has been working on shedding 30 pounds. On Jan. 1, he weighed 195. By early February he was down to 180. He skimps on lunch at work to run five miles. But to keep his horse skills honed, the married father of three commutes from Boston to Baltimore. It helps that he is a pilot who flies down and owns an aircraft leasing company in Boston.

“You do some really weird things for the passion of the sport. It’s probably tied back to history,” Griswold says. “People keep asking me, ‘Why go through the pain and suffering and being in a terrible mood because you haven’t eaten anything?’ I think there is a family legacy and pride that goes into that love.”

Predicting a victory is impossible, given that the challenging fences can undo even the best horse. “These are riders who don’t do this for a living but have to get fit enough and skilled enough to do it,” says Joe Clancy, a spokesman for the National Steeplechase Association in Elkton. “Fitness and stamina are both important, and the ability to ride at those big fences and jump them. If you don’t feel confident your horse is going to know it.”

As Griswold says: “It’s not the best horse or the best rider. It’s whoever survives. One bad footing, one bad incident, and there it goes.”

McKnight, who beat Jay Griswold in 1982, says he and his wife, Elizabeth Pearce McKnight, never pushed their daughter, Anna, into the tradition. But now that the 24-year-old is determined to win the Cup, the couple has rekindled their love of the sport, buying two horses in recent years to help her prepare for a chance to compete and win.

McKnight and his wife are the only married couple to have won the race. Pearce won in 1986 on a horse named Tong, four years after her husband. At age 27, with two children, she became the second woman to win the Hunt Cup. But she was the first in the Pearce family of Monkton to take home the trophy after numerous attempts dating to the 1920s.

Anna McKnight wants to continue the family tradition. In 2008, she raced in the Grand National, but fell. She lives and works in Manhattan, but takes the train down to Baltimore to “bust her tail,” her mother says, riding horses nearly every weekend throughout the spring.

“My wife and I would say we did not push it upon her—in fact, we like to say jokingly that we spent thousands of dollars [on college] to distract her from any thought of racing,” McKnight says. “I like to say it’s the worst thing to happen to a kid. They quit school, don’t go to college. And that’s it. It’s tremendously thrilling and exciting.”

It’s also frustrating to train a horse for several years only to have the simplest of injuries foil everything.

“People try to buy a Hunt Cup horse,” Elizabeth McKnight says. “But it takes years to get one and then some silly thing happens and they hurt their knee and the thing you worked on for five years is gone.”

It’s because of people like Anna McKnight that Charles Fenwick Jr. is certain the race will continue.

“I don’t think we’ll get to a point where nobody shows up,” he says. “There’s a tremendous desire to win the race.” Still, he added, if his grandchildren do not take an interest in the sport, “it’s not the end of the world.”

“I don’t think the fact that it’s something my father did is why I did it,” he says.

But wouldn’t he be thrilled to one day see his grandson or granddaughter cross the same finish line as him and his son?

“No question about it,” Fenwick says, “that would be terrific.”

Ever since one of the male characters on Sex and the City nonchalantly told Miranda, “maybe he’s just not that into you,” women (and men) the world over have been using the phrase as a mantra for their dating life. The phrase inspired a best-selling book, and now a feature film of the same name—set in Baltimore, no less—comes out this month. Baltimore Coffee & Tea Co. provided props for the film so we thought there would be no better place to host our roundtable discussion. Our singles sat down for a no-holds-barred talk about when you should call, the best ways to communicate (hint: breaking up by text message, never cool), and, ultimately, how you know for sure when your date is just not that into you.

What are some warning signs your date is not into you?

Casey: When they run to the bathroom and never come back. Or the flowers you sent end up back at your door.

[Laughter]

Rachel: What about the set up? You know, where you have a friend call you half-an-hour into a blind date so if it’s going bad, you can say, “oh I have an emergency” and if it’s going well you can just ignore the call.

Casey: Now I’m trying to think, has a woman I’ve been with ever gotten a call in the middle of the date?

Marc: I think if a guy says, “I have to go home early because I have something to do in the morning,” you kind of think maybe he’s not that into you. Only because we will stay up late, even if we have to wake up early, if we really like you. We’ll stay up late for football, so we should stay up late for you.

Jonathan: Yeah, we’ll put stuff off if it’s worth it.

Casey: I usually just flat out tell them [if I’m not into them]. I mean I’m 40, I don’t have a whole lot of time to waste. And I’d expect the same thing from them. Most people are just pretty direct.

And how do you know when they are really into you?

Ron: When people are sincere and they genuinely like spending time with you and you can tell, it’s very natural. It’s not so much about deciding whether to call or not, or whether Tuesday or Wednesday is the night you go out, it’s almost effortless.

Jonathan: Also, little tactile cues, a girl touches your arm a little bit, there is some type of physicality.

Kellie: Body language.

Jonathan: Yeah, exactly. And if a girl starts talking about her family and her friends more, she’s kind of inviting you more into her world.

What is the appropriate time to wait before calling?

Kimberly: I really don’t think much time should pass, you want to keep it fresh.

Marc: You never leave a voicemail—you give them the chance to call back.

Rachel: What? No voicemail?

Marc: Yeah, you’re like, “uh, this is me, I met you yesterday.”

Rachel: But then I’m wondering, “why didn’t he leave me a voicemail? Is he expecting a call back?”

Jonathan: I don’t mind leaving the voicemail initially because it kind of puts the ball in her court. If she doesn’t call back, then you know.

Holly: No contact within a week, that’s my cut off.

Casey: What about if he calls on the eighth day?

Holly: I wouldn’t totally rule it out, but you do really want that call within the first couple of days, you don’t want to wait around.

Ron: What’s too soon for you girls?

Rachel: When you leave the bar that night.

[Laughter]

Casey: What about calling to make sure you made it home?

Kellie: That just happened to me last week actually. I ended the date early because I didn’t feel anything so I didn’t want to waste my time. And then he proceeded to call me three times that night.

The group: No!

Rachel: The worst is when you go out with someone on several dates and then you never hear from them again. I would rather have them say, “I’ve got stuff going on, I’m not ready for a relationship” than just dropping off.

Marc: I think the guy was thinking he was going to get some.

Rachel: Maybe, yeah.

Marc: I have some friends who are just jerks and they act like they’re into you to try and score with you and then they just drop off. I’m not saying I agree with it, it’s very unfair to the women, but it happens.

How many dates before you think it’s appropriate to have sex?

Rachel: Depends on how much I’ve had to drink…kidding!

Jonathan: I think it’s a legitimate question.

Marc: It could go both ways. It can happen quickly and it’s not a good thing, it’s a complicated thing. But then one of my best friends, he and his wife had sex within the first couple days they met, and now they’re married. If you’re really interested in being friends with them first, then you might want to wait.

Jonathan: It’s like not breaking out everything exciting too quickly.

Holly: Well it’s a proven fact that oxytocin, or whatever it’s called, is released more in women than men. The chemical released in your brain during sex is the same as when you fall in love.

Rachel: Depends on the relationship. If things aren’t that great to begin with, then you have sex, probably not a good idea.

Casey: Or it could do a 180!

Ron: If you don’t think it’s really going anywhere, but the sex is great and there’s enough physical attraction, that’s an option.

Holly: It’s a very rare occasion when that works.

Ron: I think what sex can do is it can take things and elevate the emotional level. If you’re interested in having sex with somebody and you have reservations, you just need to talk it out and understand that it gets more emotional.

Casey: You mean you talk to them before you have sex?

[Laughter]

Holly: You at least need to know their name!

Casey: And I wonder why I’m single.

Kellie: I don’t think dating has specific rules.

Holly: That’s what the game is, trying to figure out what the rules are. And seeing if a person has the same rules as you.

How do you feel about communicating via text messages?

Marc: I can’t stand text messages. My girl cousins always text and then you’ll call them, they won’t answer, and they’ll text you back, “what do you want?”

Holly: A simple text could mean a thousand different things. But if you know a person, and you’re really comfortable with them, texting is okay because you understand what’s behind it.

Rachel: You should never do any important conversation via text messages or e-mail. “Thinking of you?” Great. “Running five minutes late?” Fine. “It’s over?” I don’t think so.

[Laughter]

Rachel: I don’t know if men do this, but women read over an e-mail or text and think, “Well, what did he mean by that?” So you can overanalyze it.

Kimberly: Because there’s no inflection! Someone could be joking and you wouldn’t know it.

Holly: Yeah and if you’re on the phone and a joke falls flat, you can kind of back it up with a little explanation.

Ron: Even though texting may not be the most effective medium, it’s very telling if someone takes something the wrong way that you texted. If they can’t take something and roll with it, maybe they’re not for you.

Casey: I think with all this texting and everything, we’ve lost the ability to communicate. Old man talking here, but we don’t know how to communicate anymore. I’ll never forget this one lady who would text me all the time and I told her I don’t like it. Then she tells me we don’t communicate enough.

Kimberly: I really miss the art of letter writing.

Marc: Oh wow, you took it way back.

Kimberly: I just love letters, but then again I’m an English major. Being able to say whatever you want at any time, it’s too much.

Jonathan: I agree with that. Talking on the phone and writing a letter is a superior form of communication. But I think in certain instances, there are certain days, the best you can muster is sending a text. It’s better than nothing.

Casey: I’ve been putting out a meal for 20, saute pans going, and this is true, I’ll have my Bluetooth in my ear. And I’ll just check in with someone, “Hey, how’s it going? good. I’ll talk to you later. Bye. Pick up!” You can always call.

Can women make the first move?

Ron: When a girl called me first, it took me by surprise.

Holly: Good surprise or bad?

Ron: A really good surprise because I thought it was very non-traditional, but this girl and I had a mutual friend so she asked about me and then she called. I thought it was wonderful that someone was straightforward.

Holly: Sometimes guys don’t know you’re interested in them, so it can be helpful. But I definitely don’t think it should be a rule.

Marc: As a guy, when a woman calls me first, it’s definitely really exciting. It’s happened to me maybe twice. If you want a guy to notice you, that would be a good way to do it.

As you’ve gotten older, do you think your priorities have changed?

Holly: They’ve changed since last week!

Casey: It used to be looks, now I still want somebody I’m attracted to, but I want somebody I can settle down with and someone I have a good time with. It used to be “oh, she’s gorgeous.” Nowadays, it’s not all about that.

Marc: One thing I don’t need is negativity. There’s so much negativity in the world, period, especially because I work for city government, I get it all the time. I need to be with a happy person, who’s genuinely positive.

Kellie: I think as you get older, you can figure out what you like and what you don’t like, it kind of narrows down your type for you. Like Casey said, you’ve figured stuff out now because of your past experiences.

Do you think it’s true that nice guys finish last?

Marc: Oh yeah.

Jonathan: In college I apparently didn’t get that memo. I was that nice guy, but I guess girls were into the bad guys. But now I think girls appreciate a nicer personality and the essential things.

Casey: Woman now are looking for security at this point. We can have nice kids together, a big house, a nice car.

The ladies: No!

Holly: I feel pretty well established that I could do anything on my own, but I would like to do it with somebody else. It’s more fun with somebody else.

Perhaps it’s not surprising that Carol Siegmeister got Lyme disease. The 71-year-old Pikesville resident is an avid gardener and she sees deer in her neighbrhood often enough: “Donner and Blitzen live in my backyard,” she says. What is surprising is that Siegmeister went through an approved treatment for the disease but never got well.

When first bitten, she thought the bumps on her ankle were poison ivy. Two weeks later, she developed a rash on her abdomen, a fever, and fatigue. She immediately went to her doctor and was diagnosed with Lyme disease. After treatment, she only got sicker.

“I am a triple type-A personality and I was hit with exhausting fatigue to the point that I was in bed a good bit of the day, which was terrible for me,” she explains. In addition, she suffered such severe cognitive dysfunction that she couldn’t run her interior-design business.

“New symptoms would emerge daily and I had no idea what was happening to me. I began to get lost in my own neighborhood, I had digestive problems, there was the chronic fatigue, I was unable to eat normally, I had flashing lights behind my eyes.”

While most people who are diagnosed and treated early for Lyme disease are cured, there is a small but terribly debilitated population that never gets well. It took almost two years for Siegmeister to feel better. A doctor carefully monitored her individualized care. Only in the past two months has she felt well enough to play golf again and eat properly, although she still tires easily.

Experts cannot even agree on what to call this persistent ailment, much less how to treat it. And the division between two distinct groups of longterm sufferers is so vitriolic that many experts fear research of the disease is getting bogged down by the controversy. But a small number of Baltimore-area physicians who specialize in Lyme disease are soldiering on anyway, trying to find help for the lingering form of the affliction.

Lyme disease is caused by an infection with a bacterium called Borrelia burgdorferi, which is usually transmitted by a deer tick bite. There are about 20,000 reported cases of Lyme disease in America annually and there were 1,248 reported cases of Lyme disease in Maryland in 2006, but experts agree that cases are vastly under-reported. Most people who get Lyme disease—though not all—develop a bull’s-eye-shaped rash around the bite area. The disease—which can strike people of any age—is treated with oral antibiotics and, for most people, that’s the end of the story.

Depending on who you ask, however, anywhere from 5 to 25 percent of people who have a well-defined Lyme disease diagnosis will develop the chronic form. These people receive treatment for Lyme disease but have symptoms that won’t give up. The lingering Lyme can be completely debilitating, imprisoning people in their homes, confining them to their beds. And there is no FDA-approved treatment for these patients.

But there’s no shortage of opinions as to what’s behind this disease and how to treat it. Although the Internet is full of snake-oil salesmen willing to capitalize on the desperation of sufferers with a host of unproven remedies, two recognized schools of thought exist. One side of the debate, which includes some patients and so-called “Lyme-literate” doctors, calls the disease “chronic Lyme disease.” The other side, occupied primarily by researchers, the Centers for Disease Control (CDC), and the Infectious Disease Society of America (IDSA), calls it “post-Lyme syndrome.”

“People that call it chronic Lyme disease believe strongly that the cause is due to persistent, ongoing infection despite the initial antibiotic treatment, so their approach is to treat it with longer courses of antibiotics,” explains Dr. John Aucott, founder of the nonprofit Lyme Disease Research Foundation of Maryland. Aucott also runs a referral clinic for the care of patients with Lyme disease and its complications. He cared for Carol Siegmeister. “The post-Lyme group, which is often represented by the CDC and the Infectious Disease Society, believe that the infection is gone and the symptoms are a by-product of having been infected.”

Aucott firmly places himself on neither side of the debate but rather in the middle, struggling to help his patients with the information and treatments available (or lack thereof). It’s no wonder he doesn’t want to pick a side—the debate between the two dogmas is so ugly it rivals the Hatfields and McCoys. When the IDSA published its practice guidelines for Lyme disease—which clearly state that long-term antibiotic treatment is ineffective against post-Lyme syndrome—the Attorney General of Connecticut sued IDSA.

Insurance companies hopped onboard with the IDSA guidelines and used them to justify denying Lyme sufferers long-term antibiotic treatment. (Lyme-literate doctors often treat chronic Lyme disease with months, if not years, of oral and IV antibiotics.) Proponents of the chronic-Lyme theory believe IDSA and the CDC have a stranglehold over research and funding, are pushing Lyme-literate doctors out of practice, and are denying sick people access to treatment. For their part, the post-Lyme syndrome folks don’t think anyone has a hard-and-fast answer yet, and anyone who says he does is selling patients promises he might not be able to keep.

Dr. Paul Auwaerter is the clinical director for the division of infectious diseases at Johns Hopkins University School of Medicine. He participated in the review of the IDSA guidelines and also helped author an article on the debate over post-Lyme syndrome that appeared in the New England Journal of Medicine last fall (and that raised no small amount of contention from the chronic Lyme set).

“We really don’t know what the best treatment strategies are and this is where, unfortunately, the science has lagged behind,” says Auwaerter. “We end up clearly falling more into the art of medicine.” Because there is no FDA-approved treatment for persistent Lyme disease, it falls to doctors to treat the symptoms affecting patients, using anything from cognitive-behavioral therapy to pain medication.

As if the waters needed to become muddier, the means of diagnosing the disease can be inaccurate and a lot is left to interpretation. Many people with persistent Lyme disease are mislabeled with fibromyalgia or chronic fatigue syndrome, or vice versa. The chronic Lyme advocates believe the illness is underdiagnosed by doctors. Physicians like Auwaerter think the chronic Lyme folks are too loose in their diagnosis criteria.

“A lot of times, these poor patients basically get told they’re crazy, which is tragic,” adds Aucott. “They usually get told they are depressed and that’s just a way for the physician to get them out of their office.”

Auwaerter is emphatic that he does not believe these patients are crazy and he does not believe the IDSA guidelines state that either. But there are doctors who routinely dismiss subjective symptoms as psychosomatic, and it’s that mentality that really lights a fire under Pat Smith.

Smith is the president of the Lyme Disease Association (LDA), a national nonprofit that provides funding for research, education, and prevention of Lyme disease and also some patient support. LDA is on the side of the chronic Lyme disease label.

“The problem comes into play because there’s a segment of mainstream medicine that says there’s no such thing as chronic Lyme disease—they say it’s all an autoimmune reaction,” she states. “They say there’s no disease and they feel, unfortunately, that these patients should not get any treatment.”

The IDSA states on its website that “an extensive review of scientifically rigorous studies and papers available to date has determined that there is no convincing biological evidence to support a diagnosis of chronic Lyme disease after completion of the recommended treatment.”

To Smith and those on her side, the IDSA guidelines are fundamentally flawed by bias.

“Because the guideline’s committees were composed of physicians who belong to the IDSA, they were all of the same mind,” says Smith. “They did not include any input from patients . . . they did not include any input from ILADS, the International Lyme and Associated Disease Society, or even from their own members who said, ‘We don’t agree with this position.'”

The IDSA states that long-term antibiotic use can have harmful side effects. While Smith doesn’t know that long-term antibiotic treatment is the absolute answer to chronic Lyme disease, she feels it is the best option available right now, one where the benefits outweigh the risks.

“We’re talking about people who have lost their useful lives, people who may be in their house for 10 years,” she explains. “Antibiotics give them the ability to have a life.”

One thing both sides can agree on is that more research needs to be done—and that their own infighting might be hindering that process.

“When I look here in academics and I train infectious disease fellows, fellows don’t want to see Lyme patients,” says Auwaerter. “They don’t want to enter this controversial area because it seems like it’s just a recipe for headaches. I think the debate, as it were, has gotten to such a level that it may stifle research.”

Ironically, both sides want many of the same things: research into the long-term nature of Lyme disease and how to treat it, and the development of better diagnostic tools.

“We desperately need more research,” Smith agrees. LDA currently is backing two bills in Congress to get $100 million over five years for research, education, and prevention of Lyme disease. But she fears the political climate swings to the side of the IDSA. “I don’t know what the answers are, but I know they need to be found, but they need to be found in a free scientific way, not in a way where a few people are controlling what comes out of this,” says Smith.

Whether the two sides can lay down their arms and work together remains to be seen, but persistent Lyme sufferers face many more hurdles.

Both researchers and pharmaceutical companies follow the money and there’s not much to be made either in the research of Lyme disease or the creation of pharmaceuticals for its treatment.

Aucott formed his foundation to support research when he tried to develop a research program for Lyme disease at Johns Hopkins and failed to get any CDC funding. This June, he’s embarking on a prospective trial of 100-200 patients with well-defined, early Lyme disease and tracking them for two years to evaluate their risk for developing the persistent form of the disease. But in the competitive world of grant money, Lyme disease simply lacks the doomsday cache needed to attract big bucks.

“When you put it next to bird flu, where people have scares of pandemics killing millions of people, or you put it next to bioterrorism, where you could have mass casualties, it doesn’t look as scary,” he laments.

Ultimately, it’s the patients who fall between the cracks. “No one wants to see these patients because there’s nothing you can do to help them that’s FDA-approved,” says Aucott. “For traditional guys like me, it’s hard to sit in front of a patient and tell them you don’t know why they still feel bad after you’ve treated them, and you don’t have anything else that’s obviously going to make them better. And it’s tragic. The poor patients get caught in the middle, and they just want to get better.”