Chronic Lyme Patients Embrace Alternative Treatments Rack Up Big Bills
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Crystal Pauley, a former physician assistant, didnt believe in so-called chronic Lyme disease until she became sick.
Many health care providers reject chronic Lyme disease as a diagnosis. One 2010 survey found that just six out of 285 primary care doctors surveyed in Connecticut an epicenter for the tick-borne infection believed that symptoms of Lyme disease persist after treatment or in the absence of a positive Lyme test.
When Pauley worked for the La Crosse, Wisconsin-based Gundersen Health System, she remembered hearing about a friend from high school battling chronic Lyme in Australia. But she had her doubts. Im working in the medical field, she said. Weve never learned about that.
Years later, Pauley has changed her mind. Pauley tested positive for Lyme in 2020. She suffers from unrelenting fatigue, joint pain and brain fog. She walks up stairs sideways because of the unbearable knee pain. Pauley said she has become pseudo-Lyme literate because of her own personal journey.
Their symptoms are always real. Theyre experiencing them, said Dr. Joyce Sanchez, an infectious-disease associate professor at the Medical College of Wisconsin who treats Lyme patients with persistent symptoms.
The Main Controversies Surrounding Lyme Disease
The blood test the CDC recommends to diagnose Lyme checks for an immune response to the bacteria, not for the Borrelia itself. Thats why the test can be negative if the disease is present for less than a month. It takes at least a couple of weeks to mount an immune response that would turn the test positive. It is easier to diagnose Lyme if you have the classic bulls-eye rash that shows up a few days after the tick bite. In these cases, testing is not even necessary. But the rash only shows up in 80% of cases.
If making a diagnosis can be complex, the controversy about the treatment is so intense that some have even coined the dispute Lyme wars. The clash emerged from doctors offices, and spread to public hearings in statehouses around the country. One of the main points of contention is the duration of antibiotic treatment not only for acute Lyme but also for PTLD. The evidence to recommend a specific length of antibiotics treatment is scarce. Most physicians follow the two- to-four-week treatment the CDC recommends. Some studies funded by the National Institutes of Health did not show any benefit when patients used several months of antibiotics. However, there is anecdotal evidence from a few patients who improved after months of antibiotic treatment. The naysayers believe this is probably due to a placebo effect.
Early Signs And Symptoms :
- Erythema migrans rash A characteristic ring-shaped rash often termed Bulls eye
- Occurs in approximately 70% 80% of infected persons.
- Begins at the site of a tick bite after a delay of 3 to 30 days .
- Expands gradually over several days, reaching up to 12 inches or more.
- May feel warm to the touch but is rarely itchy or painful.
- May appear on any area of the body.
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When Should I Call The Doctor
If a tick bites you, call your doctor. Other conditions can cause similar symptoms, so it’s always a good idea to discuss them with your doctor. That way you can get checked and treated, if needed. Call right away if you get a red-ringed rash, lasting flu-like symptoms, joint pain or a swollen joint, or facial paralysis.
What Causes Lyme Disease
People get Lyme disease when they are bitten by an infected tick. Ticks live in areas with a lot of plant life, such as wooded areas or fields. They sit near the top of grassy plants and low bushes. They wait there for people or animals to brush up against them. Ticks can crawl on your clothes or body for up to several hours or more before attaching to the skin.
Ticks can attach to any part of your body. They are usually found in hard-to-see areas, including the armpits, groin, or scalp. An infected tick needs to be attached to your skin for 36 to 48 hours before it passes the bacteria on to you.
People who spend time in outdoor areas where ticks are common are at higher risk of getting tick-borne diseases.
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Treatment For Lyme Arthritis
An initial episode of Lyme arthritis should be treated with a 4-week course of oral antibiotics. Patients with persistent joint inflammation and pain after a course of antibiotics may require a second course . In some cases, joint swelling and pain can persist or recur after two courses of antibiotics. The cause of persistent arthritis is unknown but is thought to be driven by immunologic factors. Additional antibiotics have not been shown to improve these symptoms, and patient referral to a rheumatologist is recommended.
The following regimens may need to be adjusted depending on a patients age, medical history, underlying health conditions, pregnancy status, or allergies. Consult an infectious disease specialist regarding individual patient treatment decisions.
Table 1. Oral antibiotic regimens for Lyme arthritis.*
Intravenous ceftriaxone is the preferred regimen for the second course of antibiotics for patients without any response after the initial course of antibiotics.
The Vaccine You Never Knew About
A more direct way of controlling Lyme disease, of course, would be to vaccinate people to stop the infection from jumping from ticks to humans. Telford and Smith were both involved in studies in the early 1990s, led in part by Allen Steere, to create a vaccine called LYMErix. It worked by spurring the body to create antibodies to Borrelias outer surface protein lipid A a technique shown in trials of around 15,000 patients to be about 80 percent effective in preventing Lyme infection. It would have prevented hundreds of thousands of cases, Telford said.
Sam Telford. Photo: Alonso Nichols/Tufts University
Some 20 years ago, Smith led a study looking at the rashes of patients who were proven to have early Lyme disease, and found a wide variation even in that marker. At the same time, diagnostic tests for the disease work well four to six weeks after infection, but are often ineffective before that. Theyre only about 50/50 in the first couple of weeks, Smith said. The other problem with diagnosis is that once a person has tested positive for the disease, they tend to stay positive. You cant tell if someone has been cured, and you cant tell if somebody has been reinfected, said Hu. That means doctors must often rely on guesswork and intuition to diagnose the disease, based on clues and past experience. Lyme causes a large array of symptoms that differ from person to person, Kalish said. So its a disease that can look like other things and be missed.
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Lyme Disease Frequently Asked Questions
If you have not done so already, remove the tick with fine-tipped tweezers.
The chances that you might get Lyme disease from a single tick bite depend on the type of tick, where you acquired it, and how long it was attached to you. Many types of ticks bite people in the U.S., but only blacklegged ticks transmit the bacteria that cause Lyme disease. Furthermore, only blacklegged ticks in the highly endemic areas of the northeastern and north central U.S. are commonly infected. Finally, blacklegged ticks need to be attached for at least 24 hours before they can transmit Lyme disease. This is why its so important to remove them promptly and to check your body daily for ticks if you live in an endemic area.
If you develop illness within a few weeks of a tick bite, see your health care provider right away. Common symptoms of Lyme disease include a rash, fever, body aches, facial paralysis, and arthritis. Ticks can also transmit other diseases, so its important to be alert for any illness that follows a tick bite.
Moody KD, Barthold SW, 1991. Relative infectivity of Borrelia burgdorferi in Lewis rats by various routes of inoculation.external iconAm J Trop Med Hyg 44: 135-9.
There are no reports of Lyme disease being spread to infants through breast milk. If you are diagnosed with Lyme disease and are also breastfeeding, make sure that your doctor knows this so that he or she can prescribe an antibiotic thats safe for use when breastfeeding.
Can You Live With Lyme Disease And Not Know It
One of the only reliable ways to know whether or not you have Lyme disease is through a lab test. This means that if symptoms go unnoticed, it is possible to live with the disease for weeks, months, or even years and not realize it. This is why its crucial to get tested if you suspect you could have contracted Lyme disease.
LetsGetCheckeds at-home Lyme Disease Test can identify Borrelia antibodies in the blood, which can indicate the presence of Lyme disease . Online results will be available within 2-5 days and our dedicated clinical team will be available to help throughout the process to answer any questions you may have.
You should consider taking the test if:
- You are presenting with symptoms of Lyme disease
- You live in a place that is rich in vegetation or a woodland area
- You live in Northern America or Northern Europe
- You go camping or hiking on a regular basis, particularly during the Summer or Autumn
- You come into contact with larger woodland animals on a regular basis
If you develop the erythema migrans rash, or if you experience any neurological symptoms, you should contact your doctor immediately.
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How Does Lyme Disease Work
The bacterium Borrelia burgdorferi causes Lyme disease when it get into your bloodstream. You may experience a variety of symptoms, depending on the stage of infection.
Early on, typical symptoms of Lyme disease include fever,chills, headache, joint aches and most distinctively a spreading rash thatresembles a bulls-eye.
But if itisnt identified and treated within 36 to 48 hours, the infection can spread toother parts of your body, including the heart and nervous system.
The later,more serious stages of Lyme disease can lead to neurological damage andarthritis.
Stage : Early Localized Disease
Symptoms of Lyme disease usually start 1 to 2 weeks after the tick bite. One of the earliest signs of the disease is a bulls-eye rash.
The rash occurs at the site of the tick bite, usually, but not always, as a central red spot surrounded by a clear spot with an area of redness at the edge. It may be warm to the touch, but it isnt painful and doesnt itch. This rash will gradually fade in most people.
The formal name for this rash is erythema migrans. Erythema migrans is said to be characteristic of Lyme disease. However, many people dont have this symptom.
Some people have a rash thats solid red, while people with dark complexions may have a rash that resembles a bruise.
The rash can occur with or without systemic viral or flu-like symptoms.
Other symptoms commonly seen in this stage of Lyme disease include:
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What Can I Expect Long Term If My Child Has Lyme Disease
If Lyme disease is caught and treated early, most children will make a full recovery. Some children with Lyme disease go on to experience what’s called a post-infectious syndrome with symptoms that may include feeling fatigue, joint aches and pains, headaches, difficulty sleeping, and problems concentrating. Since the infection itself is gone by this time, doctors generally don’t prescribe antibiotics. Each child is different, but it’s not uncommon for symptoms of post-infectious syndrome to linger for months, or even years, and they can be made worse by stress or other illness. But most children do make a full recovery.
Blacklegged, or deer, ticks are very small, so it helps to know what to look for when doing a tick check. Adults are about the size of sesame seeds and in the nymph or larva stage, they can be as tiny as a poppy seeds.
Diagnosis Testing And Treatment
You may have heard that the blood test for Lyme disease is correctly positive only 65% of the time or less. This is misleading information. As with serologic tests for other infectious diseases, the accuracy of the test depends upon how long youve been infected. During the first few weeks of infection, such as when a patient has an erythema migrans rash, the test is expected to be negative.
Several weeks after infection, FDA cleared tests have very good sensitivity.
It is possible for someone who was infected with Lyme disease to test negative because:
If you are pregnant and suspect you have contracted Lyme disease, contact your physician immediately.
- Report being bitten by a tick, or
- Live in, or have recently visited, a tick-infested area.
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What Are The Risk Factors For Post Treatment Lyme Disease
Risk factors for Post Treatment Lyme Disease include:
- Delay in diagnosis
- Increased severity of initial illness
- Presence of neurologic symptoms
Increased severity of initial illness, the presence of neurologic symptoms, and initial misdiagnosis increase the risk of Post Treatment Lyme Disease. PTLD is especially common in people that have had neurologic involvement. The rates of Post Treatment Lyme Disease after neurologic involvement may be as high as 20% or even higher. Other risk factors being investigated are genetic predispositions and immunologic variables.
In addition to Borrelia burgdorferi, the bacteria that causes Lyme disease, there are several other tick-borne co-infections that may also contribute to more prolonged and complicated illness.
Important Facts About Lyme Disease
It is important to know that Lyme disease is not contagious and one can only be infected if bitten by the black-legged tick or deer tick. Adding to that, a tick bite can go unnoticed because tick bites arent painful. Needless say, ticks are usually small in size and they may bite you and be gone before you even know it. However, for the bacteria to be spread into your body, the tick must have been attached to your body for at least 24-36 hours. The first case of Lyme disease was reported in the town of Old Lyme, Connecticut, USA, in 1977. This ailment is common in many parts of US, Asia, and Europe as well. Additionally, Lyme disease has three main stages namely early localized Lyme disease, early disseminated Lyme disease and late disseminated Lyme disease respectively. Each stage is characterized by unique symptoms although, they may overlap in some cases of infection. Furthermore, some symptoms may run through the different stages, though their severity may differ.
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Effects Of Untreated Lyme Disease
When left untreated, Lyme disease can be debilitating. When it isnt treated early, it can spread and go into hiding in different parts of your body. Weeks, months, or years later, it can cause problems with your brain, nervous system, heart and circulation, digestion, muscles or joints, reproductive system, or your skin. While symptoms may disappear randomly, other ones may appear at different times. This is known as post-treatment Lyme disease or chronic Lyme disease.
Can Lyme Disease Be Prevented
There’s no sure way to avoid getting Lyme disease. But you can minimize your risk. Be aware of ticks when you’re in high-risk areas. If you work outdoors or spend time gardening, fishing, hunting, or camping, take precautions:
- Wear closed shoes or boots, long-sleeved shirts, and long pants. Tuck your pant legs into your shoes or boots to prevent ticks from crawling up your legs.
- Use an insect repellent containing 10% to 30% DEET .
- Wear light-colored clothing to help you see ticks more easily.
- Keep long hair pulled back or wear a hat for protection.
- Don’t sit on the ground outside.
- Check yourself for ticks regularly both indoors and outdoors. Wash your clothes and hair after leaving tick-infested areas.
If you use an insect repellent containing DEET, follow the directions on the product’s label and don’t overapply it. Place DEET on shirt collars and sleeves and pant cuffs, and only use it directly on exposed areas of skin. Be sure to wash it off when you go back indoors.
No vaccine for Lyme disease is currently on the market in the United States.
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Treatment For Chronic Lyme Disease
Sometimes, people go through treatment for Lyme disease but their symptoms donât go away. If this lasts over 6 months, itâs known as chronic Lyme disease or âpost-treatment Lyme disease syndromeâ .
Doctors still arenât sure why some people get PTLDS. Some believe that getting Lyme disease may cause damage to your tissues or immune system. Others believe itâs because the bacteria that causes Lyme hasnât completely gone away.
There is little evidence that taking more antibiotics at this stage will help. They may actually be harmful. Instead, your doctor will focus on treating the symptoms youâre still having. This will be different for everyone. Some people could benefit from a medicine that relieves fatigue, while others may need a drug that can help with headaches or very sensitive skin.
Your doctor could also have you try a treatment that helps people with chronic fatigue syndrome or fibromyalgia.
More research is needed to figure out how best to treat PTLDS. Itâs something that can be frustrating. Just remember: Many people who have this condition do start feeling like their old selves after a few months.