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Obstacles to killing the bug

Eva Sapi, Ph.D., who teaches molecular biology for graduate students and does Lyme disease research at the University of New Haven, Connecticut, has one goal. "To kill the bug," she says. "And not in ten years, not even in six months, but soon!" She and her team of medical researchers are intent on figuring out why the Borrelia burgdorferi bacteria, the bug that causes Lyme disease, is so difficult to eradicate.

Lyme disease cases are increasing, and Sapi says she fears this year will be a bad one for ticks, and stresses the importance of prevention. Field research conducted this spring has yielded a disturbing find in her region, she says. The number of ticks carrying the infectious Borrelia bacteria has increased to 60%, up from previous years' 20-30%. She says one possible explanation for the increase could be changing temperatures. Recent mild winters may not have not dropped temperatures sufficiently long enough or frigid enough to kill the ticks.

Sapi is frustrated by the political controversy surrounding Lyme, saying that in her previous research into cancer, such obstacles were not a problem. Unnecessarily harsh criticism of her scientific findings having to do with the Borrelia bacteria has limited the number of publications where her research can be reviewed. However, significant support is increasing from other areas. Grants offered to ILADS from the Turn the Corner Foundation are currently helping fund Sapi's department at University of New Haven for research projects that hopefully, ultimately will help her reach her goal. And soon.

Dr. Sapi spoke with us on April 27, 2008. Members, please keep an eye out for our conversation about her research, to be posted soon to the Lyme Expert Audio Interview page.

Scientific evidence ignored

If you are struggling with late stage Lyme disease symptoms, the last thing you need is anyone telling you there is no such thing as chronic Lyme. Yet that is what doctors, many who seem genuinely interested in helping their patients, are doing.

Doctors who defend the IDSA's guidelines for the treatment of Lyme -- thirty days of antibiotic therapy -- as sufficient say there is no scientific evidence to prove that Lyme disease can enter a chronic stage. However, Ginger Savely, RN, FNP, who treats patients with Lyme, says that thousands of animal studies do offer scientific evidence that Lyme bacteria survive beyond the recommended one month course of doxycycline. Yet these studies are overlooked by the IDSA.

"Of course, we can't do the same kinds of experiments on humans as we can on animals. So just because we don't have the human studies out there, the IDSA always wants to ignore all the many, many animal studies that there are, basically just saying, well, those aren't people," says Savely.

Two approaches to Lyme symptoms

Ginger Savely, RN, FNP, who treats people with Lyme disease symptoms and other tick-borne diseases, says, "I always tell my patients that the approach is from two angles. One is to decrease bacterial load, by giving antibiotics to kill the bacteria. The other is to strengthen the immune system."

Detoxing and boosting the immune system must go hand in hand in the successful alleviation of Lyme disease symptoms. "Because if the immune system isn't functioning very well," says Savely, "you can give a person all the antibiotics in the world, they're not going to be able to fight the infection."

Savely says her approach is realistic, considering the complicated nature of the Lyme bacteria, which has the capacity to hide and evade the body's immune system for an unknown amount of time. The twofold approach can take time and effort, yet she says the hard work eventually pays off. "Hopefully, the bacteria levels decrease to a point, where the newly strengthened immune system can take over and keep the infection at bay," she says.

Become a member and listen to our exclusive audio interview with Ginger Savely and other Lyme specialists.

Lyme disease symptoms in families

RN and Lyme expert Ginger Savely says similar Lyme disease symptoms frequently show up in members of the same family. In her experience treating patients with Tick Borne diseases at health care clinics in Texas and San Francisco, CA, some families seem to be more keenly susceptible to falling ill from a tick bite. Genetic disposition may play an important part.

The Borrelia bacteria does not affect all people to the same degree. Lyme disease symptoms vary from person to person, but family members may present similar symptoms. And some may not get sick at all, exhibiting a stronger genetic resistance to succumbing to the infection.

"It is always impressive to me how many people do have this infection that are totally fine. Many times, I will check family members that are still healthy, and they actually test very positive for the disease, although they have no symptoms," says Ginger. The bulls eye rash is not always present.

Ginger, a member of ILADS, follows their guidelines when treating Lyme patients. That means sticking with antibiotic therapy for as long as it takes. For certain patients, such as those who have suffered with Lyme disease symptoms for decades, treatment has taken up to four or five years. Neither Ginger nor her patients mind that treatment must be prolonged. As she says, "it does pay to just keep plugging along, and keep treating. Because eventually people do get better."

Read about the Expert Interview Audio Series and listen to the interview with Ginger Savely.

Doc examines Lyme & Alzheimer's link

Lyme disease symptoms can look a lot like other diseases' symptoms, not the least of which is Alzheimer's. In late-stage, or tertiary stage of Lyme, the bug has infected the brain. It may be hard to distinguish between the symptoms of somebody with late-stage Lyme, and somebody suffering from Alzheimer's disease.

Such was the case of Paul Christensen, who was diagnosed with Lyme, treated, and then released from Stony Brook Hospital. Paul was a firefighter, yet he struggled for eight years with mental deterioration after his diagnosis of Lyme. Finally, he died due to Alzheimer's.

Paul's wife suspected that there was a strong link between her husband's diagnosis of Lyme and his death from Alzheimer's disease. If there was a connection, she was determined that other people should learn about it, in the event that it might help reduce their suffering. So, after Paul died she urged medical researcher Dr. Alan MacDonald to investigate her husband's case.

Dr. Alan MacDonald is a featured expert in the 'Interviews with Experts' series, which you can access here. In the 30 minute audio interview, he tells about the well-documented Christensen case, and he describes what he and other researchers are doing to understand the Lyme bug, so we can eradicate it.

Lyme is weird, spirochetes are crafty!

Lyme is weird. Spirochetes are crafty. Lyme disease symptoms can look different in everyone, because infection can occur in any system of the body. Some people never see a tick, yet they develop symptoms, go to the doctor and get antibiotics. Others can't persuade their doctors to even test for Lyme -- even if they caught the nasty little tick in the act, and display the classic symptom of a bull's eye rash. A significant number of people don't read their own symptoms right (like I said, Lyme is weird. Who can blame them for not suspecting it?) Therefore, they may not discover they've got Lyme (if they're 'lucky' enough to test positively for it) until the disease has reached the late stage. By then, according to some Lyme literate docs, the bug is very tough to catch, and v-e-r-y resistant to being killed.

What if, even after you test positively, and your doc is ready to treat you, you're turned down by your insurance company? And anyway, let's not pretend that only people with health insurance get Lyme disease. What do you do when you're sick and you're not insured? It's no secret that antibiotics are prohibitively expensive. Some herbal treatments that appear to be quite effective are less so, but if you aren't able to afford to see a Lyme literate doc in the first place, where does that leave you?

That leaves you right where untold numbers of struggling sick people find themselves: On your own. Left to your own devices. And here's the rub: Lyme brain! Anybody with this disease understands what a cruel joke the universe seems to have played. At the very moment you need your mind the most, your critical thinking faculties are all fogged up. What's a Lymie to do? Find smart people who've been down this path and ask a bazillion questions. Here's a shameless plug for our 'Interviews with Experts' series. Tune in and listen up. We've all got a lot to learn.

Persistent Lyme disease symptoms to be studied

Some people think Lyme disease symptoms are "all in your head." Others experience persistent challenges, including severe fatigue, cognitive disorganization and arthritis, and argue that in spite of their having completed antibiotic therapy the Lyme bug is still making them sick. Regardless of your position on whether or not chronic Lyme exists, the question remains: Why do Lyme disease symptoms persist, in some patients, beyond the recommended course of antibiotics prescribed by the CDC?

A recent study conducted at the UC Davis Center for Comparative Medicine offers assurance that scientists are attempting to answer that question. According to a news release distributed by UC Davis News Service on March 31, researchers found residual amounts of the Borrelia burgdorferi bacteria lingering in the DNA of laboratory mice, after the infected mice had completed antibiotic therapy. Apparently the research suggests that although residual bacteria can be detected, there is no evidence that it is causing inflammation or disease. However, the study shows that it may, in part, account for persistent symptoms. According to lead researcher Professor Stephen Barthold, "this may explain why some Lyme disease patients recover slowly following antibiotic treatment, exhibiting what has been termed 'post-Lyme disease syndrome'."

Fortunately, we can look forward to further investigation into the cause of chronic Lyme symptoms, and perhaps even one day discovering therapies to stop Lyme's devastating effects. "The results of this study do set the stage for controlled laboratory research investigating potential therapies for persistent Lyme disease infections," researchers at the Center for Comparative Medicine say.

Read more about Lyme disease symptoms.