New Lyme Disease Test Could Lead to Earlier Treatment

By Pat Anson, PNN Editor

At long last, scientists are close to developing a new test to detect Lyme disease weeks sooner than current tests -- allowing patients to begin treatment earlier.

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

Borrelia burgdorferi was first identified as the bacteria that causes Lyme disease in 1983.  The antibody tests currently used to detect Borrelia were developed a decade later and have a number of shortcomings. They can take up to three weeks to get results and cannot distinguish between an active infection or an old one.

A team of scientists recently reported in the journal Clinical Infectious Diseases that advances in molecular diagnostics should make a new DNA test for Borrelia technically feasible.

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“These direct tests are needed because you can get Lyme disease more than once, features are often non-diagnostic and the current standard FDA-approved tests cannot distinguish an active, ongoing infection from a past cured one,” said lead author Steven Schutzer, MD, a physician-scientist at Rutgers New Jersey Medical School.

“The problem is worsening because Lyme disease has increased in numbers to 300,000 per year in the United States and is spreading across the country and world.”

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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, which resembles a ring or bulls-eye. When there is no rash, a reliable laboratory test is needed to detect an active disease.

“The new tests that directly detect the Lyme agent’s DNA are more exact and are not susceptible to the same false-positive results and uncertainties associated with current FDA-approved indirect tests,” said Schutzer.

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.

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.

Medical Cannabis Saved My Life

By Tammy Malone, Guest Columnist

People are talking about the addicts who are overdosing due to the opioid epidemic. Maybe we should start talking about the people who take opioids just to be able to function in life. 

Chronic intractable pain is a terrible way to live.  I know from experience that when you live in that much pain, you get to a point where all you can see is the ultimate way out.  Chronic pain is blinding.  It blinds you from life, family, joy and happiness.  It robs you of your hopes and dreams, until you are left withering, suffering and asking yourself, "Is this all my life is ever going to consist of? Living in so much pain?"

Too many of us are forced to live this way. For some, it is just too much to bear and suicide is our only way out.  

I can honestly say I have thought of this.  I was in so much pain I was contemplating suicide. Then I found a compassionate, caring group of doctors at a Tennessee pain clinic and my life was spared.  I was given shots, acupuncture, and massage.  I started an anti-inflammatory diet that helps slow down the destruction of Lyme disease, which is breaking down the joints and bones in my body. 

I was also put on a manageable dose of the opioid medication Demerol.  For 6 years, I had my  dreams back. I could see a future filled with family, friends,  joy and happiness. 

My body is still breaking down and nothing is going to change that.  I'm 53 and have the spine of a 90 year old.  I've shrunk over half an inch due to the discs deteriorating in my back. I've had 3 discs removed and my spine fused. Both knees are bone on bone.  My hip joints have deteriorated and my shoulders are blown out. I have fluid pockets in many of the joints, so it's not only painful but difficult to move. 

This destruction is not going to stop or get better, and I don't care how many Tylenol you throw at it,  it won't touch the pain.  But the pain management clinic helped me exist.  The opioids helped me function  and have a life beyond the blinding pain.  It gave me another 2,372 days with my family and friends. 

TAMMY MALONE

TAMMY MALONE

Then came the War on Opioids. My doctor discussed the issues this war was having on his practice and what it meant for his patients. What it was going to ultimately mean for me.  To say I was in a panic is an understatement.  The thought of returning to a life in that much pain was unfathomable. 

I knew I had about 6 months before the do-gooders and Big Brother were going to push my doctor to start tapering me down. We discussed the other options, which we had or were already doing, and I cried.  I knew what was coming.  An unacceptable existence. 

This was the same time my parents had talked about getting me and my husband a plane ticket to Montana for a mini-vacation at our family cabin in the Rockies.  I really thought it was going to be my last family vacation. Because in a year,  I wouldn't be around. Suicide was already in my forethought. 

Although the stress of it all had begun to increase my pain levels, I agreed to go.  The night I stepped off the plane, my ankles swelled to the size of my calves and I couldn't walk. In 11 days at the family cabin, I lost 22 pounds due to inflammation,  elevation and the dryness of the mountain air. But I enjoyed the vacation and was happy I went. 

I also learned that Montana was a medical marijuana state.

Over the next couple of weeks back home in Tennessee, I asked my entire team of doctors, seven in all, what they thought about medical cannabis. With the exception of my neurologist, they all agreed it might be an option.  So we sold our dream property, got rid of our horses, sold everything in Tennessee and moved to Montana.  

Starting Medical Cannabis

I'd like to say everything is 100% better, but that wouldn't be accurate.  Moving to Montana and starting medical cannabis has been a challenge.  After an incredibly stressful time of trying to find doctors who would even look at my medical records, I was able to find a compassionate doctor in Helena named Dr. Mark Ibsen.  He went over my medical history, looked at my extensive list of medications, and reviewed my medical folders, MRI's and x-rays. After an hour of discussion, he agreed to take me on.  I cried with relief.  He was my lifeline.

It took 6 months to taper me off my pain meds and reduce the other 44 pills I took everyday down to 7.  Trying to find the right strain of medical cannabis hasn't been easy. I don't like to feel high or drugged (Demerol never made me feel that way), and finding the proper dosage of cannabis has been a challenge. 

Cannabis doesn't relieve the pain completely. While Demerol kept the pain manageable at a 3-4 level, cannabis keeps me at a level 6, which is uncomfortable most days.  Occasionally,  when I overdo things,  I can spend 24 to 36 hours at a level 8.5. Those are the days I wish I was still taking the opioids or at least had them as an option.

All in all, I was lucky.  I was lucky my parents thought to give me a vacation that unexpectedly showed me there was another medical option. I was lucky my husband agreed that we should sell everything and try Montana.  I was also lucky to find a compassionate doctor. It saved my life. 

But I also think about all the other pain patients who do not have options.  The "War on Opioids" has become a "War on Pain Patients."  I did some research and found the opioid overdose numbers being publicized include all overdoses from heroin.  These are addicts who are dying, not pain patients.

Not too long ago, I had a supposed friend call me an addict because she had preconceived idea of how I was living my life.  That taking pain meds to function made me the same as her opioid-addicted son, someone who did whatever it took to get his fix.  She hurt me and it cost a friendship, but it also made me see that too many of us are getting labeled.

Things need to change.  We need to be heard and we need to tell our stories.  We don't need to have people in Washington, DC leave us with suicide as the only option of living a pain free life. Too many of us are dying as it is.  Please leave our pain management doctors alone as they are our lifeline to the future. 

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Tammy Malone lives with complex late-stage Lyme disease and Bartonella, a bacterial infection of the blood vessels. Both are spread by ticks. Tammy was first bitten by a tick in 2008.

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

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.

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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.

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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.