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.
For more on this topic read
US News May 20, 2017 article Lyme Disease on Rise Amid Diagnosis, Treatment and Controversy.
THE BASICS
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.
TREATMENT
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.
WHAT ABOUT A VACCINE?
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.
LIVING WITH
LYME DISEASE
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 in.org, 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:
Check out
Healing the Whole Person: Ways to Increase Well-Being When Living with a Chronic Condition and Getting What You Need Checklist
RESOURCES
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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