Lavigne Keeps ‘Head Above Water’ with Lyme Disease

By Pat Anson, PNN Editor

Lady Gaga isn’t the only celebrity speaking out about her battle with chronic pain and illness.

Pop star Avril Lavigne has released a new album called “Head Above Water” that was inspired by her battle with Lyme disease -- a bacterial infection usually spread by ticks that can lead to severe pain and chronic fatigue if it’s not treated and diagnosed early.

That’s what happened to Lavigne, who thought she just had the flu when she started having symptoms in 2014. It took several months for her to get a correct diagnosis.

“I was seeing every specialist, literally the top doctors, and they would pull up their computer and (say) ‘Chronic fatigue syndrome’ or “Why don’t you try to get out of bed Avril and just go play the piano? Are you depressed?’” Lavigne said in an emotional interview on Good Morning America.

This is what they do to a lot of people that have Lyme disease. They don’t have an answer for them, so they tell them they’re crazy.”

The 33-year old singer eventually found a Lyme specialist who diagnosed her correctly. By then she was bedridden.

“One night, I thought I was dying, and I had accepted that I was going to die. My mom laid with me in bed and held me. I felt like I was drowning,” Lavigne wrote on her website.

AVRIL LAVIGNE

AVRIL LAVIGNE

“Under my breath, I prayed ‘God, please help to keep my head above the water.’ In that moment, the song writing of this album began. It was like I tapped into something. It was a very spiritual experience. Lyrics flooded through me from that point on.”

Although the single “Head Above Water” is about Lyme disease, anyone bedridden or housebound by chronic pain or illness can probably relate to it.

Lavigne went public about her battle with Lyme disease in 2015, but it was another two years before she was well enough to sit at a piano and started composing music again.

“I fought Lyme disease on antibiotics and herbs for two years. I tried to have a life, but was in bed the majority of the time, and it was very up and down with good days and bad days,” Lavigne explained.

“When you’re in bed for the better part of two years, you lose muscle mass and your entire body gets weak. I’ve had to work to get my endurance up. ‘Head Above Water’ was the first song that I sang. I was fresh off not singing for two years. I thought my voice would be weak, it ended up being stronger than ever. The break happened to actually be good for my vocal cords.”

“Head Above Water” is the sixth album for the Canadian born singer, who has been nominated for eight Grammy Awards. Her single “Girlfriend” was the first music video to reach 100 million views on YouTube. Her foundation – the Avril Lavigne Foundation – raises awareness and supports people with Lyme disease and other chronic illnesses.

Can Stem Cells Treat Lyme Disease?

By A. Rahman Ford, PNN Columnist

In a recent article in Scientific American, author Mary Beth Pfeiffer paints a startling portrait of Lyme disease in America.  She describes the “peril and menace” now associated with many forests, parks and even some backyards -- landscapes that Lyme disease-carrying ticks inhabit in ever-increasing numbers. 

“Although children are the most frequently diagnosed group and thousands of infected patients develop long-term infirmity every year, little has been done to curb the spread of the ticks,” Pfeiffer wrote. 

According to the article, the primary reason for the explosion in Lyme disease is that mainstream medicine continues to labor under the long-disproven myth that the disease is easy to diagnose and treat.  In truth, diagnosis is complex, and treatment options are woefully inadequate and sometimes even dangerous. 

According to the Centers for Disease Control and Prevention , Lyme disease is the most common vector-borne illness in the U.S.  It is transmitted by the bite of a blacklegged tick, or deer tick, that is infected with Borrelia burgdorferi or Borrelia mayonii bacteria. 

Deer ticks tend to thrive in woody or grassy areas.  Although most cases are reported from northeastern states like New Jersey, Connecticut and Maryland, states like Minnesota and Wisconsin have also reported cases. The geographic distribution seems to be expanding, along with an increase in the number of counties reporting Lyme cases.

Deer_Tick_-_geograph.org.uk_-_105508.jpg

In 2016, there were over 36,000 confirmed or probable cases of Lyme disease, although the actual number may be ten times as high. Common symptoms include a small red bump at the site of the tick bite, which can expand into a rash that forms into a bull’s-eye pattern.  Flu-like symptoms are also common. 

If Lyme disease is left untreated, multiple symptoms may emerge which may be dermatological, musculoskeletal, neurological and/or cardiovascular in nature.  Symptoms can include severe joint pain and swelling, meningitis (swelling of the brain), paralysis, numbness, weakness of the limbs and impaired muscle movement.  These symptoms can last for months or even years.  Because they tend to mimic the symptoms of other diseases, Lyme is often misdiagnosed.

There is no consistently reliable test for Lyme disease and diagnosing it can be tricky.  Oftentimes, patients do not present with a rash or any other common symptoms.  Laboratory tests, like enzyme-linked immunosorbent assay (ELISA), which are designed to detect bacterial antibodies, can give false positives.  And the Western Blot test, used to confirm ELISA results, has no standard criteria for interpretation.

Treatment for Lyme disease is likewise problematic.  The standard course of treatment is a 14 to 21 day course of oral antibiotics.  If the patient presents with neurological symptoms, intravenous administration may be preferred.  According to the Mayo Clinic,  “after treatment, a small number of people still have symptoms, such as muscle aches and fatigue,  the cause of these continuing symptoms, known as post-treatment Lyme disease syndrome, is unknown, and treating with more antibiotics doesn’t help.”

However, many holistic practitioners disagree, contending that the number of patients with post-treatment symptoms is far larger than estimated, and an extended course of antibiotics – or other treatment modalities – may be warranted.  Several of these physicians have had their licenses revoked, faced other disciplinary actions for ethics violations, or even been sent to prison.

Stem Cells and Lyme Disease

Given that the standard course of treatment fails many Lyme disease patients, alternative therapies are needed.  Stem cells may be a viable option to treat symptoms associated with Lyme disease syndrome because they are inflammatory in nature.  Mesenchymal stem cells, which may be readily obtained from bone marrow or adipose (fat) tissue, are known to possess immunomodulatory properties.  This means they could potentially lower inflammation and resolve the stubborn persistent Lyme symptoms that refuse to respond to conventional antibiotic therapies. 

KELLY OSBOURNE

KELLY OSBOURNE

Although the evidence for the efficacy of stem cell therapy in treating Lyme disease is largely anecdotal, the stories are compelling.

In one high-profile case, former E!’s Fashion Police host and Project Runway Junior judge Kelly Osbourne details her experience with Lyme disease in her memoir.  

In 2004, Osbourne was bitten by a tick from a reindeer at her father Ozzy’s 56th birthday party.  As a result of the bite, she suffered for a decade with “traveling pain” from a sore throat and stomach aches, which eventually led to a seizure on the set of Fashion Police.

 Osbourne was later diagnosed with epilepsy and prescribed drugs that, in her words, “turned her into a zombie.”  She went from taking Ambien to Trazodone to painkillers to anxiety medication.

After visiting an alternative medical practitioner, Osbourne tested positive for Lyme disease.  Rather than try to treat the disease with antibiotics, she went to Germany for stem cell therapy.  That therapy was a success.  In her words, “I was experiencing emotions and feelings again.” 

Osbourne initially kept quiet about what she calls her “cure” because she feared retribution from pharmaceutical companies.  She has since become an advocate for stem cell therapy.

Patients suffering from chronic Lyme disease need options.  Stem cell therapy could be one of them.

A. Rahman Ford, PhD, is a lawyer and research professional. He is a graduate of Rutgers University and the Howard University School of Law, where he served as Editor-in-Chief of the Howard Law Journal. He earned his PhD at the University of Pennsylvania.

Rahman lives with chronic inflammation in his digestive tract and is unable to eat solid food. He has received stem cell treatment in China. 

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

A. Rahman Ford.jpg

Insurance Claims Climb for Lyme Disease

By Pat Anson, Editor

Private insurance claims with a diagnosis of Lyme disease have soared in the U.S. over the past decade, according to a new report by FAIR Health, a nonprofit that tracks healthcare costs and insurance trends.

Lyme disease is a bacterial illness spread by ticks. It can also lead to other chronic pain conditions such as joint and back pain, chronic fatigue, fibromyalgia and neuropathy.

Fair Health analyzed a database of 23 billion private insurance claims from 2007 to 2016, and found that claims with a diagnosis of Lyme disease increased by 185 percent in rural areas and 40 percent in urban areas.

A recent CDC study also found the number of Lyme disease cases increasing, with nearly 40,000 confirmed and probable cases in 2015.

"Lyme disease is growing as a public health concern,” said FAIR Health President Robin Gelburd

Although Lyme disease historically has been concentrated in the Northeast and upper Midwest, the FAIR Health study suggests that it is spreading geographically. In 2007, insurance claims with diagnoses of Lyme disease were highest in New Jersey, Rhode Island, Connecticut, Massachusetts and New York.

By 2016, the top states were Rhode Island, New Jersey, Connecticut, North Carolina and New York -- with the emergence of North Carolina suggesting significant expansion to a new region.

Summer is the peak season for Lyme disease, with insurance claims more common in rural than in urban settings, according to the FAIR Health report. In the winter and early spring (December through April), claims involving Lyme disease were reported more often in urban than rural settings.

Age is also a differing factor in rural and urban environments. In rural settings, claims with Lyme disease diagnoses were more common for middle-aged and older people. Patients aged 41 years and older accounted for nearly two-thirds of the rural diagnoses. In urban populations, younger individuals with Lyme disease accounted for a higher percentage of claims.

Lyme disease is usually treated with antibiotics, but some patients experience complications that lead to Lyme disease syndrome (PTLDS), with long-term symptoms such as fatigue, muscle and joint pain and cognitive issues. Autoimmune diseases have also been associated with chronic Lyme disease.

Left untreated, Lyme disease can lead to serious chronic conditions, as Sarah Elizabeth Hirschle shared with us recently.

For patients with a Lyme disease diagnosis, FAIR Health reported the most common subsequent diagnoses were:

  • Joint pain (dorsalgia, low back pain, hip and knee pain)
  • Chronic fatigue  
  • Soft tissue disorders (myalgia, neuralgia, fibromyalgia)
  • Hypothyroidism
lyme disease rash

lyme disease rash

Early symptoms of Lyme disease include fever, chills, headaches, fatigue, muscle and joint aches, and swollen lymph nodes. A delayed rash often appears at the site of the tick bite. The rash grows in size and sometimes resembles a bulls-eye.

To see some tips from the CDC on how to avoid tick bites, click here.