Ticked off

Kim Savage from Tahoe City has been fighting Lyme disease for years. Sometimes she feels fine, and then other times: “At work, I can’t make a complete sentence. Someone could order a coffee, and I can’t process it. I’m more than tired, my mind doesn’t work.”

Savage initially got sick as a kid in New Hampshire, then got even sicker 12 years ago. Now to fight the Lyme she’s been through three rounds of long-term antibiotics, managing her diet, and enduring the painful weekly self-administered shots in the butt with immune system boosters that will hopefully help her fight the disease. “It’s so hard to cure it because you have to wipe it all out. If you don’t, something can come back and trigger it.”

But as a single mom, she can’t miss work. And all her treatment has been out of pocket or in exchange for her artwork, because insurance doesn’t cover it. She hopes that someday her metal and neon art business can develop to the point that she doesn’t need to be tied to an hourly job, since sometimes she has difficulty getting the energy to get to work, or feels like dying half way through the day.

Those who suffer from chronic Lyme disease often feel tired and just want to sleep. Sometimes they sleep because of exhaustion and sometimes because their skin is crawling with pain. One patient refers to the pain as similar to having “all your hair pulled out of your head.” Severe light and noise sensitivity are additional symptoms, and sometimes an advanced state of confusion progresses to where they have difficulty remembering where they are.

In fact, the long term pain and suffering combined with difficulty maintaining hope has led to suicide becoming not uncommon among Lyme sufferers. As blogger Leila says in “From Lyme to Limeade,” about the death of her friend with Lyme, “Heather’s deep-rooted feeling of being misunderstood, judged, and invalidated is something that Lymies know far too well. And it’s a horrible shame. We feel it from family members, society at large, and our own doctors.”

According to the Centers for Disease Control (CDC), Lyme disease is caused by the bacterium, borrelia burgdorferi, which is transmitted to humans through the bite of an infected Blacklegged Tick. Usually, the tick has to attach itself to your body and suck blood for at least 36 hours before the disease can be transferred. The symptoms may include: fever, headache, fatigue and a skin rash. If not treated early, it can spread to joints, the heart and nervous system. The disease is most prevalent in ticks in the Northeastern United States, including the town of Lyme, Connecticut, and in a few spots on the Northern California coast. When someone from Reno-Tahoe with chronic Lyme is asked, they often say that they’ve hiked the Appalachian Trail, or used to play in the woods in New England when they were kids. But there is no guarantee it couldn’t be contracted in the California foothills or a variety of other places where ticks thrive.

The key to curing Lyme disease is early treatment. If it’s hit hard with antibiotics just a few days after the tick is removed, the chances of kicking it to the curb are quite high. The problem is that many people do not even know they were bitten by a tick, or that the symptoms they feel years later were caused by a tick. For those with any of the symptoms of Lyme disease, even if they think they were not bitten by a tick, the key is to have the disease diagnosed as soon as possible. The more time it goes untreated, the more damage it can do.

What many call chronic Lyme disease, the CDC calls Post Treatment Lyme Disease Syndrome (PTLDS). It’s a condition for those who have undergone Lyme Disease treatment and still can’t get rid of the symptoms. The CDC says that 10-20 percent of patients treated with a 2-4 week course of antibiotics will have lingering symptoms of fatigue, pain, joint and muscle aches, which can last more than six months.

The CDC website says, “But many patients have been fighting the disease for years … most medical experts believe that the lingering symptoms are a result of damage to tissues and the immune system that occurred during the infection. Some health providers tell patients that these symptoms reflect persistent infection with borrelia burgdorffieri.”

When the CDC talks about “most” medical experts, they are talking about the opinions of the Infectious Diseases Society of America (IDSA). When they are talking about “some health providers” they are referring to the views of the International Lyme and Associated Diseases Society (ILADS). Both organizations are dedicated to researching a cure for Lyme, but they have differing opinions on what the best current treatment should be.

In general, the CDC has adhered to the opinion of the IDSA, and the insurance companies have followed suit, which is that “most cases of Lyme disease are successfully treated with a few weeks of antibiotics. Using antibiotics for a very long time (months or years) does not offer superior results and in fact can be dangerous, because it can cause potentially fatal complications. We sympathize with these patients’ suffering, but remain concerned that a diagnosis of so-called ’chronic Lyme disease,’ suggesting that active infection is ongoing, is not supported by scientific evidence.”

Meanwhile, ILADS is “dedicated to advancing the standard care for Lyme and its associated diseases and improving physician understanding of how to treat Lyme. ILADS states that the tests for Lyme are unreliable and fail to accurately diagnose Lyme, and that “a preponderance of evidence indicates that active ongoing infections is the cause of persistent symptoms in chronic Lyme disease. Most cases of chronic Lyme require extended course of antibiotic therapy. Relapses occur. Retreatment may be required.”

Thus, Lyme disease is hard to cure, with symptoms that are subjective, in that there is not an easy test to say that a particular symptom is tied to a particular disease, and the treatment plans of choice­—in this case antibiotics—don’t always work. And just to make matters even more peachy, ticks transmit a whole soup of nasty diseases, so many patients who get a dose of Lyme may also be getting other infections as well, which add to the painful mix of symptoms and the difficulty in diagnosing. The two organizations most prevalent in setting protocol for the disease vehemently disagree on the best method of treatment.

Dr. Jeanne Plumb from the Truckee Tahoe Medical Group says that the first key is to have the disease accurately diagnosed. There is just one way to accurately test for Lyme disease, according to the CDC. It’s a two-step process. The first step is called an EIA test. If that is positive or inconclusive, then the Western-Blot test is done, which will tell you whether you have the disease. But the problem according to the ILADS folks is the tests are not 100 percent conclusive, and so it is then up to doctors to be able to accurately diagnose the illness. Unfortunately, ILADS has found that the average Lyme patient sees five doctors over two years before being diagnosed, which is understandable since the symptoms of Lyme are similar to the symptoms of a number of other illnesses.

Once a patient has been diagnosed with Lyme, the standard medical practice is a strong course of antibiotics. Up to this point, the treatment protocol is fairly standard and there is agreement in both the traditional (CDC, IDSA) and Lyme-literate medical communities (ILADS) about how to fix the problem. But once the antibiotics have been applied, and months and years go by and the symptoms are still there, what to do next is controversial.

The CDC feels that long term use of antibiotics for those 10-20 percent who don’t respond to regular treatment is not effective. They believe that the first dose of antibiotics kills the bacteria, and that what patients are experiencing is the body’s response to the inflammation caused by the bacteria, not the bacteria itself. The CDC and IDSA believe that the inflammation damage to the body can take a long time to recover from and that if patients do not recover, they should be tested for other diseases with similar symptoms such as Fibromyalgia, Arthritis or Chronic Fatigue Syndrome. Meanwhile, the ILADS website says there is “much documentation demonstrating that short courses of antibiotic treatment fail to eradicate the Lyme spirochete.”

In the meantime, a bunch of hurting people want their lives back. That is why organizations such as ILADS have been working on alternative methods of treatment. As one provider says on their website, “The majority of women we see have already had extensive testing and treatment by other health care providers and have been told that there is nothing more that can be done for them.”

Dr. Stephanie Riley treats a number of people with chronic Lyme. She says there are “a huge range of treatments, and a lot of controversy with chronic Lyme.” She says that patients often get under-treated and then the symptoms come back. Like Plumb, she says the sooner the treatment the better. But with chronic Lyme, the treatment varies with the individual. You “treat the person where they are. If they have been fighting it for 5 or 10 years, supporting their foundational health works. You are building the rest of their body to take over and manage the battle. There is really no set protocol. I have people that I treat for three months; they never look back and have no issues. And then I have people that get a little better, and then they backslide. And it can be incredibly frustrating and emotionally debilitating. It’s a complex issue because Lyme impacts a bunch of different symptoms.”

Meanwhile, there are people like this woman, who asked that her name not be revealed. In the last five years, she has lost her job and her house while fighting the disease. It took three years to diagnose it. She was in and out of the hospital and had a ton of inconclusive, expensive, and unnecessary tests. No one even considered the possibility it could be Lyme. She has fought tooth and nail to get disability to help her stay alive financially. She has her good days, and it’s on those days that people often tell her she looks too good to be sick, but a lot of days she is in pain and doesn’t have the energy or brain power to get out of bed. She’s tried anything and everything to fight the disease, and feels that she is slowly, but much too slowly, getting better. What can be done for someone like her?

The Infectious Diseases Society of America says, “Given that long-term antibiotic therapy has not been found to effectively treat symptoms that persist after the initial infection is cleared, IDSA supports additional research to determine safe and effective treatments for patients that experience such long-term symptoms. IDSA will continue to periodically review its Lyme disease guidelines and update them as needed to reflect the best available scientific literature.” While the ILADS Lyme-literate folks would agree with the need for more research, they believe a continued course of antibiotics and more aggressive treatment is the best solution now.

Plumb agrees that more research by the FDA into finding a solution is necessary. “We have to practice evidence-based medicine. We need to make sure we’re truly helping ourselves, and find out what really works. Some of the alternative methods are being tested and some are panning out true, while a lot of them can’t be scientifically backed up. We want to recommend what we have science for.” Plumb believes one area that could be looked into for research is the impact of the flora in our gut, and its connection to immune disorders, or our inability to fight the disease. Some also believe there is a hereditary connection, that some people are genetically more vulnerable to the infection. Efforts to create a vaccine have been ongoing for years without success, but extensive research on creating an effective one are still underway.

So what is a Lyme sufferer to do? First, if at all possible, don’t get it. Those traveling to where there are ticks should check themselves frequently. If bitten by a tick, contact a medical provider immediately. Those with Lyme symptoms should get tested and start treatment right away. If it doesn’t go away, unfortunately, that’s when it gets challenging, and a long road towards a cure might be unavoidable.

The CDC says that over 300,000 people are infected with Lyme disease each year. Hopefully, someday soon scientists will find a cure, so that those who have been fighting the disease for years can finally get their lives back. The Lyme to Limeade blogger sums it up—“The system is broken, plain and simple. And until more research is done to find better, more effective cures, and doctors are willing to step up and acknowledge chronic Lyme disease, and health insurance companies are willing to cover treatment, and families start validating the reality of the Lyme experience, people are going to keep taking their lives. I hate that I’m even writing that, but it’s true.”