Archive for the ‘Lyme’ Category

Fatigue, Joint Pain and Low Testosterone – Had Lyme Podcast

https://livingwithlyme.us/episode-52-restoring-health-through-a-multi-therapeutic-approach/

Episode 52: Restoring Health Through a Multi-Therapeutic Approach

Cindy Kennedy, FNP, is joined by Dr. Jaban Moore, whose passion for restoring health through a multi-therapeutic approach came from watching his mother deal with health issues. His own Lyme struggle put him on a learning path to conquer this illness and now he treats and advocates for other Lyme sufferers.

Dr. Moore’s mother was diagnosed with diabetes after a three-year struggle trying to figure out what was causing her health to decline. She was diagnosed only because she was in a car accident and in the emergency room she was told that she was diabetic. Her doctors noted that the diagnosis was possibly missed for years. By this point she had gained 100 pounds, her cholesterol was out of control, she had ulcers in her stomach, depression, high blood pressure and chronic fatigue.

Growing up Dr. Moore watched his mother’s condition progress, adding new medications but never curing or making her feel better for long – just stabilizing one symptom until the next started. This eventually lead to thyroid cancer and two surgeries. Through this experience, Dr. Moore found his mission to discover the root cause of a condition so that the progression can be stopped so the next person doesn’t have to go through a story like hers.

During chiropractic school, when his own health journey began, he started to decline physically rapidly with no known cause at the age of 25. Over the next year, he searched for answers with many different doctors. He was experiencing fatigue, joint pain and low testosterone. After not finding many answers from several doctors he was at a conference of functional medicine doctors. It was there he met one who suggested the possibility of Lyme disease. After some testing and further investigation, Dr. Moore was found to be positive for Lyme. This began his journey of learning how to treat it. After consulting several doctors and trying many treatments Dr. Moore found relief and has been symptom-free for over five years now.

Dr. Moore’s professional and postdoctoral training includes True Cellular Healing, Chiropractic Plus Kinesiology, Applied Kinesiology, Clinical Kinesiology, Acupuncture, Bio-Resonance Therapy, Sacro-Occipital Technique (SOT), Nutrition, Rehabilitation, Functional Medicine, Blood Laboratory Analysis and Live Cell Microscopy.

He has taken courses on Mastering Functional Blood Chemistry, Mastering Thyroid, Mastering Brain Chemistry, and has trained with several Lyme disease and parasitology experts.

 

 

 

 

 

Wahls Protocol – Impact of Diet & Nutrition in MS & Other Neurological Diseases

Episode #87: Wahls Protocol with Dr. Terry Wahls, MD

By Better Health Guy

Why You Should Listen:

In this episode, you will learn about the Wahls Protocol and the impact of diet and nutrition in MS and other neurological diseases.

About My Guest: My guest for this episode is Dr. Terry Wahls. Terry Wahls, MD is an Institute for Functional Medicine Certified Practitioner and a clinical professor of medicine at the University of Iowa where she conducts clinical trials. In 2018 she was awarded the Institute for Functional Medicine’s Linus Pauling Award for her contributions in research, clinical care, and patient advocacy. She is also a patient with secondary progressive multiple sclerosis, which confined her to a tilt-recline wheelchair for four years. Dr. Wahls restored her health using a diet and lifestyle program she designed specifically for her brain and now pedals her bike to work each day. She is the author of “The Wahls Protocol: How I Beat Progressive MS Using Paleo Principles and Functional Medicine”, “The Wahls Protocol: A Radical New Way to Treat All Chronic Autoimmune Conditions Using Paleo Principles”, and the cookbook “The Wahls Protocol Cooking for Life: The Revolutionary Modern Paleo Plan to Treat All Chronic Autoimmune Conditions”. She conducts clinical trials that test the effect of nutrition and lifestyle interventions to treat MS and other progressive health problems. She teaches the public and medical community about the healing power of the Paleo diet and therapeutic lifestyle changes that restore health and vitality. She hosts a Wahls Protocol Seminar every August where anyone can learn how to implement the Protocol with ease and success.

Key Takeaways:

– How did Dr. Wahls go from four years in a wheelchair to riding her bike to work? – What is the 3/3/3 nutrition program?

– Why are greens, colored vegetables and fruits, and sulfur-containing foods so critical?

– How is the mitochondria and myelin supported through diet?

– Why are mushrooms and seaweed key components of the protocol?

– What protein sources are utilized?

– What is the role if intestinal hyperpermeability in autoimmune diseases?

– Are lectins a problem for those with neurological disease?

– What is the role of the microbiome in supporting health?

– Do infections play a role in MS?

– Does environmental toxicity need to be considered to maximize health potential?

Connect With My Guest: http://terrywahls.com Related Resources: Diet: http://terrywahls.com/diet Papers: http://terrywahls.com/papers Interview Date: December 11, 2018 Additional Information: To learn more, visit http://BetterHealthGuy.com.

Disclaimer: The content of this show is for informational purposes only and is not intended to diagnose, treat, or cure any illness or medical condition. Nothing in today’s discussion is meant to serve as medical advice or as information to facilitate self-treatment. As always, please discuss any potential health-related decisions with your own personal medical authority.

_________________

More on Wahls:  https://madisonarealymesupportgroup.com/2017/05/20/minding-your-mitochondria/

 

 

 

 

 

Irish Farmers Talk of Agony From Undiagnosed Lyme

https://www.irishexaminer.com/breakingnews/ireland/farmers-talk-of-agony-from-undiagnosed-lyme-disease-895053.html

Farmers talk of agony from undiagnosed Lyme disease

 

Farmers have opened up about the agony of suffering silently with Lyme disease, which is notoriously difficult to diagnose.

There are around 200 new cases of Lyme Disease every year, but the true incidence is not known, as it can often be overlooked, due to varied symptoms.

Pop star Avril Lavigne, actor Richard Gere, and former US president George W Bush are all said to have experienced the horrors of the Borrelia bacteria, which is carried by infected ticks.

‘Ear to the Ground’ presenter Ella McSweeney, left, with Charlie Harkin, who had Lyme disease, and his wife, Serena.

It can cause a range of debilitating symptoms, from fatigue and joint pain to neurological problems.

It is transmitted by tiny ticks that live outside on animals. Farmers are particularly vulnerable to the condition.

Jack Lambert, a consultant specialist in infectious disease at Dublin’s Mater Hospital, believes the disease is more common in Ireland than previously thought.

“We actually have to open up our mind up to this new disease, which is much more common than we were previously aware of,” said Dr Lambert.

“We need to resource, to educate the GPs on the frontline, who are seeing these patients, to even think about Lyme.

“We need to educate the specialists, who are seeing these patients with fibromyalgia and chronic fatigue and rheumatological conditions and neurological conditions, to even consider Lyme, because it’s not on their radar screen at present.

“Not every case of rheumatoid arthritis is going to be Lyme disease, but you should at least think about it and do the test and take a history.

In Thursday’s episode of RTÉ’s farming series Ear to the Ground, a farmer speaks of the devastation of suffering the symptoms, such as chronic fatigue and joint pain, and the failure to have his condition diagnosed.

Charlie Harkin, a part-time farmer from Inishowen, began to feel unwell on Christmas day four years ago.

He suffered with Lyme disease for two years before being diagnosed following a blood test.

“I was jumping for relief that someone was telling me what I had,” he said.

I wouldn’t wish this on my worst enemy. It is savage. It was one of the scariest things I ever went through in my life and I never want to do it again.

Dr Lambert said the disease is very treatable.

“My belief, and my observation from treating patients, is that even if it has been in your system for five or ten years, if you do all the necessary treatment — antibiotics, immune supplements, anti-inflammatories, things to fix the immune system — it is curable,” he said.

“If you catch it early, within six months, I think, sometimes, even a three- to six-week course of antibiotics does it, or even two to three months of antibiotics does it.”

Farmers are urged to avoid tick-borne infections by wearing repellent and by checking for ticks at the end of the day, looking out for a bulls-eye rash, flu-like symptoms, and nerve pain.

_________________

**Comment*

I’ve previously posted articles on Dr. Lambert, a Scottish doctor who is currently working as an Infectious Diseases consultant in a public hospital in Dublin, Ireland. He has been treating Lyme Borreliosis patients for 20 years in the USA and during the last 5 years in Ireland. He has also successfully treated young women who fell ill after their HPV vaccination, which seems to have stimulated a latent Lyme infection.

For those articles:  https://madisonarealymesupportgroup.com/2017/12/02/scottish-doctor-gives-insight-on-lyme-msids/

https://madisonarealymesupportgroup.com/2017/12/02/scottish-doctor-on-lyme-msids-part-2/

Some telling quotes by Dr. Lambert:

We are in the very primitive stages of our understanding of Lyme and co-infections. This is what I sometimes would like to do. Lyme is a bacteria, a spirochete. It gets into your body and causes all sorts of damage. Immunological damage, inflammatory damage.

“But it’s the bacteria. Dummy.”

We should not be calling it Chronic Fatigue or MUS, when we know it is caused by a bacteria. And the bacteria is hard to grow. And the immune system starts to attack the bacteria and causes all this inflammation. The immune system eventually starts to wear down. But when you treat many of these patients with all of these ‘garbage bag’ diagnoses, they get better with the antibiotics.

Antibiotics work against bacteria, anti-virals work against viruses. So when I treat someone with antibiotics and they get better, my conclusion is that this is a bacterial effect (although disbelievers say antibiotics have ‘immunological effects’).

So, I say to the disbelievers ‘It’s the bacteria, dummy’ and find better diagnostic tests to identify these bacteria. Don’t tell patients it ‘post-infectious’ when you are unable to grow the bacteria before treatment, and then can’t grow it during or after treatment.

Treating this; however, takes finesse and a trained & experienced eye.  This is not a straight-forward illness like strep-throat.  For more on that, please see:  https://madisonarealymesupportgroup.com/2016/02/13/lyme-disease-treatment/

Essential concepts while treating Bb:

  • Treat all forms of Bb
  • Treat coinfections as this is typically a polymicrobial illness
  • Lyme/MSIDS is slow growing and persistent requiring longer treatment time
  • Dr. Burrascano recommends Cycling.  This means that after a person has been symptom-free for 2-4 months stop treatment.  If and when symptoms return, start treatment again.  In his experience, 3-4 of these cycles typically allow most patients to achieve wellness, with the worst herx on the 3rd cycle.
  • Lyme/MSIDS wreaks havoc on the entire body requiring supplementation where imbalances occur
  • Inflammation requires changes and substances to reduce it
  • Address pain
  • Address insomnia
  • Some patients require higher doses of drugs as research has shown their blood levels aren’t high enough.  Without high enough blood levels, they won’t be killing pathogens and run the risk of allowing the pathogens to mutate
  • Address psychological issues if present
As you can see, this is far from a “take this pill and call me in the morning.”

 

Lyme Mexico & Plasmapheresis

https://www.lymedisease.org/lyme-mexico-plasmapheresis/

TOUCHED BY LYME: A look at Lyme Mexico and plasmapheresis

By Dorothy Kupcha Leland

I first heard about Lyme Mexico, Dr. Omar Morales, and plasmapheresis from a friend—a father whose 22-year-old son had been gravely infected with Lyme disease, Babesia, Bartonella and related conditions.

Despite oral, IV and other treatments from top Lyme doctors in the US, the young man’s health worsened by the day.

“My son was overrun with Babesia and Bartonella infections in his blood stream,” the father told me later. “About 90% of his red cells were infected. This level of infection was giving him life-threatening psychiatric and physical symptoms.”

The experts they consulted recommended a procedure called plasmapheresis.

What is plasmapheresis?

The process filters the blood, removes harmful substances such as overactive cytokines, pro-inflammatory mediators, heavy metals and toxins, and then returns it to the body.

Plasmapheresis is used throughout the United States for a variety of conditions, including Guillain-Barre syndrome and sickle cell disease, but not typically for tick-borne diseases (TBDs).

But, although many US hospitals have the capability of performing this procedure, this family couldn’t find one willing to do it for their son. (I assume this was due to the weird and destructive medical politics that surround Lyme and TBDs in this country. But I digress….)

Who is Dr. Omar Morales?

Finally, they learned about Dr. Morales and his clinic in Puerta Vallarta, Mexico, and took the young man there. He received plasmapheresis and a therapy called red blood exchange over a period of 11 days. According to the father, “By the third treatment, my son was coming back.”

By the final day of treatment, my friend says the young man was better than he had been in years and at that point, really started on his road back to health. The father credits Dr. Morales with saving his son’s life.

Knowing this background, I was eager to hear Dr. Morales’ presentation at the recent ILADS conference in Chicago—and pleased to have some time to chat with him afterwards.

Omar Morales attended college in the United States and medical school at the University of Guadalajara. He also received a second degree in transfusion medicine, which is concerned with blood transfusion and other blood-related issues. He then began working with his father, Dr. Raul Morales, a hematologist and transfusion medicine specialist, in Puerto Vallarta.

The two doctors Morales soon found that more and more of the people who came to them for help were infected with TBDs and related problems.

That led the younger Dr. Morales to start attending ILADS conferences, consulting with diverse TBD specialists and exploring new ways of treating these conditions. This process in turn led him to open the Lyme Mexico clinic.

Four steps to healing from TBDs

In order to restore a patient to health, Morales says it’s important to address TBDs in the following areas:

  • Treat the active infection
  • Eradicate biofilms and persisting cells
  • Eliminate toxins
  • Stimulate (re-educate) the immune system

Depending on the person’s individual needs, Lyme Mexico offers a variety of therapies to accomplish those objectives. These include various forms of apheresis (cleansing the blood and returning to the body), assorted IV treatments (including IVIG), extreme whole-body hyperthermia (which heats the body to create an artificial fever), ozone, and UV light blood irradiation.

Dendritic cell vaccines

Dr. Morales’ presentation this year at ILADS explained dendritic cell vaccines, which are made from the patient’s own cells taken from the blood. When this vaccine is given to the patient, it boosts the immune system by activating white blood cells to kill the selected bacteria.

According to Dr. Morales, dendritic cell therapy re-educates and modulates the immune system. This allows the patient’s own body to eliminate the infection while also re-educating other cells such as B cells (a type of white blood cell) to create more IgG immunoglobulins (an antibody that binds to many kinds of pathogens).

In addition to Lyme disease, his clinic treats other tick-borne infections, parasites, viruses, PANS/PANDAS, and other conditions.

Lyme disease and TBDs in Mexico

Many of the patients who come there are from the US and Canada, though TBDs are problematic in Mexico as well.

According to Dr. Morales, rickettsial diseases (such as Rocky Mountain spotted fever and ehrlichiosis) are the #1 TBD in Mexico. He says different forms of rickettsia have infected as many as 10 million Mexicans so far, versus the almost two million confirmed cases of Borrelia burgdorferi (Lyme).

Unfortunately, Morales says, most Mexican healthcare providers follow the belief that Lyme disease is a simple, self-limiting problem or an easy-to-treat issue.

However, he says that doctors in Mexico are not forced to follow a specific, conventional course of action with unresponsive cases. Thus, he says,

“In Mexico, there is some room for experimentation and freedom for physicians to be creative without being harassed.

Dr. Morales continues to actively pursue research aimed at finding new and more effective treatments for Lyme and other TBDs. He firmly believes that a multidisciplinary and integrative approach is essential.

The father who originally told me about Dr. Morales and Lyme Mexico had another comment to offer.

“Transfusions have risks and are expensive. But in my son’s case, NOT having it done would have killed him. We decided to take the risk and it saved his life.”

Click here for more information about Lyme Mexico.  

Click here for more information about Lyme disease and co-infections.

TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s Director of Communications. She is co-author of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at dleland@lymedisease.org.

_________________

**Comment**

https://madisonarealymesupportgroup.com/2017/10/01/panspandas-steroids-autoimmune-disease-lymemsids-the-need-for-medical-collaboration/  Numerous stories are told within this link as well as the effectiveness of plasmapherisis for certain conditions.  Considering the connection between PANS/PANDAS, Lyme/MSIDS, and other autoimmune conditions, it would behoove doctors to learn about and utilize this treatment.

 

 

 

 

MCAS & Lyme/MSIDS – 2018 ILADS Convention

http://www.betterhealthguy.com/ilads-2018

Please go to link above to read The Better Health Guy’s summary on MCAS presentations at the Chicago ILADS convention.  Scott has requested people go to the link as there may be future corrections to the information.

He summarizes Dr. Afrin and Dr. Mozayeni’s presentions.

Afrin:  “Mast Cell Activation Disease: Foundation and Application in Tick Borne Disease Management”

Mozayeni:  “Mast Cells: Considerations in the Lyme or Bartonella Patient”

For those of you suffering from MCAS, I highly recommend Dr. Afrin’s book, “Never Bet Against Occam:  Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness and Medical Complexity”

For more on MCAS:  https://madisonarealymesupportgroup.com/2017/04/17/mast-cell-activation-syndrome-lymemsids/

https://madisonarealymesupportgroup.com/2018/03/13/mcas-lyme-msids/

https://madisonarealymesupportgroup.com/2018/03/26/the-agony-of-mcas/

https://madisonarealymesupportgroup.com/2018/07/27/mcas-vaccination-lyme-msids/  Dr. Afrin recently related the story of a patient,

“who in the first year of his life had been perfectly normal and then, within hours of his first DTP vaccine at age one, developed into just a terrible multi-system inflammatory mess, including essentially acute onset autism.”

When he was 20 years old, biopsies tested positive for mast cells. He was subsequently treated for MCAS with remarkable improvement.73

Most babies in the U.S. are being given 25 doses of nine different vaccines (or more) by their first birthday and can receive eight or more vaccines simultaneously.74 As mentioned previously, there are ingredients in vaccines that provoke inflammatory responses in the body that involve mast cell activation.75

 

The History Of Lyme Disease – Dr. Burrascano

https://www.ilads.org/dr-burrascano-happy-holidays/?  Approx. 43 Min.

The History of Lyme Disease

Dr. Burrascano explains and debunks much of what is accepted and blindly promoted in main-stream medicine about Lyme.

He also shares what he discovered worked with patients, often by trial and error.

Important takeaways:

  • Burrascano found that blood levels of various drugs in some patients was low or even undetectable.  In other words, the level of doxycycline in the blood for instance, was too low to kill anything, which helps explain why some fail antibiotic therapy.  (Scroll to 17:30 for this information.)  He also cringes because the CDC guidelines state all patients should receive 200mg of doxycycline, which sets some patients up for failure.  Doctors should do blood levels on patients to determine if it’s working.
  • He, as well as ILADS, recommends being symptom-free for 2-4 months before stopping treatment.  Then, wait until symptoms return and go back on treatment.  This is called Cycling.  He found that cycling 3-4 times typically worked for most patients.  Ironically, the 3rd cycle yielded the worst herx.  Pam Weintraub wrote about this in, “Cure Unknown:  Inside the Lyme Disease Epidemic,” way back in the 90’s, yet few doctors do this.
Please share this with family, friends, doctors, and researchers.

 

 

 

 

 

 

 

 

What I’ve Learned Reporting About Lyme Disease, a Contested Illness

https://www.cjr.org/analysis/lyme-disease-contested-illness-empathy.php

What I’ve learned reporting about Lyme disease, a contested illness

As Jeff Wheelwright began researching his book about Gulf War Syndrome, he planned to speak to suffering veterans and medical experts who were skeptical those ailments were real. But the first veteran Wheelwright interviewed flipped the script. “What is the goal of your book?” the man asked. “Does it lean more toward the veterans’ side of the house, or the other side?”

Wheelwright’s experience resonated with me. When I began reporting on Lyme disease in 2017 for a series for a Boston National Public Radio station, I quickly learned my attempt at impartiality was naive. I’m a physician, and in medical school I learned a strong majority of physicians and scientists view this common tick-borne illness as relatively straightforward and treatable by antibiotics. Many people and some doctors, however, hold that a chronic, treatment-resistant form of the disease is also widespread—a claim dismissed by the large majority of infectious disease experts.

I’m also a social scientist, so I saw Lyme fitting in with numerous other “contested illnesses,” from Gulf War Syndrome to chronic fatigue syndrome to Morgellons. Contested illnesses have uncertain causes, unclear treatments, and disputed medical, legal and cultural definitions. Lodged where politics, intense emotions, and science converge, these are the “illnesses you have to fight to get,” as one study termed them, because whether such illnesses even exist is hotly debated.

Covering Lyme and other contested illnesses, therefore, requires that reporters navigate a minefield of competing expertise and experiences. A misstep could dismiss suffering patient-activists; it could also uncritically report claims unsupported by the scientific process. But careful reporting and writing can play a crucial role in helping patients and scientists alike sort through rumor and anecdote to understand the science of contested illness in plain language.

For the seven-part series, I spent days reporting in Cape Cod and eastern France, interviewing public health officials finding innovative ways to combat ticks, scientists trying to understand the disease and its spread, and patients and their family members who struggle with tick-borne illnesses. I spent hours reading websites of associations and “Lyme literate” patient-advocacy groups.

Lyme experts and patients often asked my opinion on non-standard treatments such as essential oils or long-term antibiotics, questions designed to reveal my bias. I worried anything I said would shatter my interviewee’s trust.

Early on, I listened to patients and experts on social media and blogs to understand their suffering and frustration with a medical system that did not help them and made them feel even worse by denying them a diagnosis. I also spoke to Abigail Dumes, a colleague anthropologist researching Lyme. Her years of ethnographic experience with doctors and patients were like a Cliff’s Notes, illuminating the major debates, key figures, and landmines right at the start.

Journalists without time for background research can stumble onto one of those landmines. In 2011, reporter David Tuller wrote about a trial exploring the benefit of exercise therapy for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). “Not knowing any of the background, I took the study at face value,” he later wrote.

The backlash was immediate. Numerous ME/CFS sufferers wrote in, concerned about the trial’s numerous methodological problems. Compelled to dig deeper, Tuller eventually penned a 15,000-word critique of the trial’s methodology. (The controversy continues today.)

Picking the right story angle is also critical to avoid repeating stereotypes and report beyond the controversy. A 2016 Aeon article highlighted clichés about vaccine-rejecting parents—different than contested illness, but with a similar political valence pitting regular people against medical consensus. Those stories shared a formula, wrote Maggie Koerth-Baker: “The parents fear vaccines. The scientists say those fears are unwarranted. Wash, rinse, repeat.”

Exposing clichés helped Koerth-Baker write beyond them. She found that parents often accepted vaccine science but chose not to risk side effects, no matter how rare. Parents’ values—not their grasp of facts—determined their stance.

Lyme reporting also has repetitive narratives: a debilitated patient suffering from a mysterious, recurrent illness facing off against numerous skeptical doctors who told them their symptoms were “all in their head.” I read numerous stories, often about celebrities with Lyme, detailing how they saw countless doctors, all of whom misdiagnosed them until one finally found the “correct” diagnosis. Reporters usually do not question the narrative and how that diagnosis was finally made, or how all those other doctors could have gotten it wrong. The intricacies of Lyme diagnostic testing are complex, but journalists often overstate the foibles, saying it is “impossible” to detect the bacteria or blood testing is unreliable.

So I focused on what seemed like key questions that still lacked answers, such as why we know so little about preventing Lyme disease, or why, despite growing numbers of ticks, local public health efforts remained so fragmented and limited to educating people about bug repellent and tick checks. When I focused on how a treatment center took a new perspective on helping suffering patients, part of the story was how they tried, but ultimately failed, to avoid taking sides in the debate.

Journalists are in a unique position to shape how people view contested illnesses and the people suffering from them. It is both vital and possible to be simultaneously empathetic and accurate. “I try not to be a cruel person,” says Amy Maxmen, a senior reporter for Nature who has written about ME/CFS. “I’m going to take them at their word when they say they’re going through something terrible.”

Some people with contested illnesses might offer their treatment stories as unimpeachable; still, providing context, like the strength of the evidence for or against them, plus their cost and potential side effects, is crucial to avoid spreading misinformation.

And Lyme patients were clearly suffering with something, even if it wasn’t clear what. I would try to validate that suffering in interviews, then stay quiet and listen. I’d ask probing questions if my interviewee veered toward the conspiratorial, but would not derail the interview with a debate, preferring to follow up later after I was able to dig more thoroughly through the literature.

The same went for treatments. Lyme experts and patients often asked my opinion on non-standard treatments such as essential oils or long-term antibiotics, questions designed to reveal my bias. I worried anything I said would shatter my interviewee’s trust.

Maxmen does not simply report anecdotes about successful treatments, like coffee enemas, that are commonplace for ME/CFS. Many non-standard treatments for Lyme are well studied with most not shown to help while some can even cause harm. Some people with contested illnesses might offer their treatment stories as unimpeachable; still, providing context, like the strength of the evidence for or against them, plus their cost and potential side effects, is crucial to avoid spreading misinformation.

The usual caveats for science journalists apply doubly for writing about contested illnesses: Avoid false balance (“on the one hand”, “on the other”) when there is an established scientific consensus. Maintain healthy skepticism, and take heed the lessons of media coverage of past controversial illnesses such as hysteria or neurasthenia.

No matter how carefully a journalist writes a story, her work still may be undone—by an editor who wants an easy takeaway, or poorly chosen art, or hastily written headlines, captions, and social media posts that oversimplify the story.

I was lucky. At WBUR I had a generous word count, multiple pieces in a series to provide context, and a supportive editor who sought my input in headlines and radio segments. Her experience with Lyme and the potential for backlash meant we both were extra careful.

Still, we had to be prepared for angry reactions. In the past, I ignored comments on my stories. Then I read the social science literature suggesting that unchallenged misinformation will persist.  Now I try to respond, sometimes even to inflammatory comments, emphasizing open mindedness, empathy to those suffering, and avoiding bias. My editor often pitched in, as a team approach helped distribute the extra time and patience required.

I found many arguments about Lyme focus on studies that support their conclusions without even-handedly assessing the quality of all the data out there. I emphasize quality to point out why we should trust randomized, controlled studies more than anecdotal evidence or low-quality studies. But I also emphasize points of agreement, like how we all want to do a better job of being empathetic to suffering people with unclear diagnoses. Stories about contested illness test the skills and mettle of journalists, but, at a time of fake news and rampant misinformation, getting these stories right is more important than ever.

David Scales is an Assistant Professor of Medicine at Weill Cornell Medical College. He was a special correspondent for WBUR, and has written for Aeon, Undark, and CommonHealth about issues where social sciences and health intersect. Reporting for his “Losing to Lyme” project was supported by the Pulitzer Center for Crisis Reporting. He can be found on Twitter @davidascales.

 

For the Losing to Lyme Series:  https://www.wbur.org/commonhealth/tag/losing-to-lyme