Saturday, July 22, 2017

Living with Lyme Disease

Vermont has one of the highest incidences of Lyme Disease (LD in the country and in my small town, at least four people have been learned of the diagnosis only after being tested in an effort to understand symptoms such as pain and fatigue. They had no recollection of having been bitten by a tick.

With the spread of LD all over the country, thought a post on LD might be useful. This post has been designed for people living with Lyme Disease (PLWLD)-sometimes referred to as chronic, persistent or post treatment. To learn about preventing LD, go to TakeTicks Seriously.

The black-legged tick is responsible for the infection, a bacterium called Borrelia burgdorferi.

Though there is evidence that LD has been around for thousands of years in the US, it was  “discovered” 40 years ago. It is a complex and puzzling health condition for multiple reasons:
•  The Infectious Diseases Society of America (IDSA) and the International Lyme and Associated Diseases Society (ILADS)  — the two medical associations associated with LD, have issued competing and controversial care guidelines for Lyme There is a growing group of LD “literate” providers who are outside IDSA and ILAD. While some are doing outstanding work, others are taking advantage of patients who are desperate for relief. 

•  LD is often called the “great imitator” because of the broad range of symptoms, such as digestive problems, joint conditions and cognitive issues. Some people develop lingering symptoms after initial treatment and there are others, that haven’t felt well for a long period of time and are surprised to learn they are infected. It’s important to note that 25% of those with LD don’t recall a tick bite.

• Ticks are known to carry many pathogens and will often pass on more than one co-infection with a single bite. These co-infections can increase the severity of the Lyme symptoms or cause entirely different symptoms. They also do not all respond to antibiotics, complicating diagnosis, treatment, and management of symptoms.

• Testing, while available is not always accurate.

Symptoms of early Lyme disease: Can be flu-like (fever, chills, sweats, muscle aches, fatigue, nausea and joint pain) and may be accompanied by a rash (bull’s eye or other types) or facial drooping. If you develop a rash, take a photo, and see a doctor immediately. Your primary care provider should be able to provide a test. At this stage of infection, the Lyme test can be negative so treatment should not be delayed if there is suspicion of LD (tick bite, rash, fever etc.). Please note that LD isn’t the only condition you can get from a tick bite and locally at least one person has contracted anaplasmosis from a tick bite.

Symptoms of PLWLD: People who have unresolved LD, whether they’ve been treated or not, experience symptoms such as fatigue, restless sleep, pain, aching joints or muscles, pain or swelling in the knees, shoulders, elbows and other large joints, decrease short-term memory or ability to concentrate and/or speech problems.

Use the Lyme Disease Symptom Checker to help you understand your possible risk for LD. 

Testing: The most common diagnostic tests for Lyme disease are indirect ones. They measure the patient’s antibody response to the infection, not the infection itself. The two most-used antibody tests are the enzyme-linked immunosorbent assay (ELISA) and the Western blot. The CDC recommends that doctors first order an ELISA to screen for the disease and then confirm the disease with a Western blot. As noted above, testing within the first four-6 weeks of Lyme infection is unreliable as the person will not have developed the antibody response.

 The earlier you are treated, the better the outcome. Depending on your doctor and presenting symptoms will dictate length of antibiotic treatment. Some people’s symptoms do not resolve after six months and develop what is called Post Treatment LD.

The ideal antibiotics, route of administration and duration of treatment for persistent Lyme disease are not established. No single antibiotic or combination of antibiotics appears to be capable of completely eradicating the infection, and treatment failures or relapses are reported with all current regimens, although they are less common with early aggressive treatment.

There are medical providers that are now specializing in LD and are trying a variety of treatments, some of which are controversial. However, some are trying treatments, which have been approved for other conditions, “off label” just not LD.

One such “off label” use is hyperbaric oxygen treatment (HBOT).  An approved therapy for 14 different conditions, there has been at least one study that has shown its efficacy for PLWLDs. In May, Seven Days ran a story Is Hyperbaric Oxygen a MiracleCure?,  which describes how a VT chiropractor is using HBOT for PLWLD.

In 1998, the FDA approved a Lyme vaccine, LYMErix, which reduced new cases of the disease by nearly 80 percent. Yet, in 2001, manufacturer SmithKline Beecham voluntarily withdrew LYMErix from the market amidst problems with sales and reports by some who were vaccinated that as a result, they developed musculoskeletal ailments including arthritis. A class-action suit was brought against the company, even though data gathered did not support that claim. While there is interest in a vaccine, given the experience of SmithKline Beecham, it’s unlikely to expect one in the near future. However, there is a vaccine for dogs, which is administered yearly.

While the physical symptoms of LD are bad enough, the disease can cause emotional, financial, logistical and work difficulties. Because there are no clear treatment guidelines, let alone a cure, PLWLDs are subject to scams and it’s not uncommon to rack up enormous bills for treatments and tests that lead nowhere. Check out If it Sounds to Good to Be True: Scams, Frauds, and Quacks.  Therefore it’s important to find a medical provider that you can work with, as well as connect with other PLWLDs.

Local Resources: The easiest way to find out what type of resources exist in your state is to Google your state name with “lyme resourses.” Infectious Disease and Internal Medicine are the two medical specialties that treat LD.

Learn about your condition: Knowledge is power. Using the links in the Resource Section below, keep tabs on the latest research. Be careful of the sites you use-those sites that end, edu and .gov are generally going to be more reliable. Be wary of sites trying to sell you a product.

Share your data: Incredible strides are being made in all fields of medicine as people are now sharing their data thanks to the Internet. Some sites, such as Patients Like Me, are running clinical trials to help find out what works and what doesn’t. Sites to consider

Connect with Others: Check with providers and others with LD about where a local support group might be. If there isn’t one, check out:


Bay Area Lyme Association: Currently funding the development of therapies for later stage Lyme with enhanced efficacy and reduced side effects relative to antibiotics.  

Lyme Disease Association: Offers a Doctor Referral site. 

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