“Managing” Lyme patients? How about treating them?
by Daniel J. Cameron, MD, MPH
“Minds are like parachutes. They only function when open.” This particular quote by Thomas Dewar came to mind after reading an article, Chronic Lyme Disease (1) in the June issue of Infectious Disease Clinics of North America.
In it, the author writes, “the scientific community has largely rejected chronic, treatment-refractory Borrelia burgdorferi infection.” This is based on “the failure to detect cultivatable, clinically relevant organisms after standard treatment.”
The intention of the Chronic Lyme Disease article is evident — convince readers that chronic Lyme disease does not exist, and that antibiotics prescribed for more than 14- to 28-days are of no benefit and most patients have no lingering symptoms.
It is particularly troublesome that the author, Paul Lantos, MD, a Duke University Medical Center researcher, is co-chair on a panel responsible for updating the Infectious Disease Society of America’s (IDSA) treatment guidelines for Lyme disease. Dr. Lantos holds a position not to be taken lightly. The IDSA recommendations will determine, for the most part, the types of treatment patients diagnosed with Lyme disease will receive.
Additionally, Dr. Lantos includes a section entitled, “Clinical Approach to Patients with Chronic Lyme Disease Diagnosis,” in which he offers suggestions to physicians on how to ‘manage’ patients complaining they have chronic Lyme disease. Recommendations include listening patiently during the consultation and then explaining to the patient why their symptoms are not related to Lyme disease.
“A certain amount of time must be spent reviewing past experiences and past laboratory tests … then explaining why Lyme disease may not account for their illnesses.”
“Even if chronic Lyme disease lacks biological legitimacy, its importance as a phenomenon can be monumental to the individual patient,” says Lantos. “Many have undergone frustrating, expensive, and ultimately fruitless medical evaluations. And many have become quite disaffected with a medical system that has failed to provide answers.”
Managing patients, who insist they have chronic Lyme disease can be challenging, he warns. This subset of patients can have “great variation in their ‘commitment’ to a chronic Lyme disease diagnosis. Some patients are entirely convinced they have chronic Lyme disease, they request specific types of therapy, and they are not interested in adjudicating the chronic Lyme disease diagnosis.”
Should a clinician have a patient who believes they have chronic Lyme disease, there are several ways to manage the evaluation, he explains. First, “the physician needs to suppress preconceptions or biases about such patients.”
Second, “the process of clinical information gathering in medicine is no different in the context of chronic Lyme disease. Even if much discussion is centered on chronic Lyme disease.”
And, lastly, “it is of utmost importance to not seem to be impatient, dismissive, or rushed. Many patients who seek care for chronic Lyme disease already have accumulated frustration. … Each patient’s clinical story and personal history is unique and valid, even if one concludes that they do not have Lyme disease.”
For the patients who do remain chronically symptomatic, Dr. Lantos explains, there has been “little evidence of active infection, and their symptoms do not respond to antibiotics any better than to placebo.”
When dealing with complex, chronic illnesses, physicians need to develop a trusting and understanding relationship with their patients. It is impossible for a clinician to provide the highest level of care to their patients, which includes a thorough evaluation, if they enter into the doctor-patient relationship with preconceived notions, not only about an extremely complex disease but about the patient who is reporting the symptoms, which are often subjective.
Should the patient not have any of the three objective signs of Lyme disease — the bull’s-eye rash, swollen knee and/or Bell’s Palsy, identifying the infection is dependent on a strong evaluation. Patients want physicians to provide effective treatments. They don’t want to be ‘managed.’
It is time for a new narrative. One that recognizes the complexity of the Lyme spirochete and acknowledges the ineffective simplicity of the ‘one-size fits all’ treatment approach.
- Lantos PM. Chronic Lyme Disease. Infect Dis Clin North Am, 29(2), 325-340 (2015).
This post is reprinted by permission from the blog All Things Lyme. Dr. Daniel Cameron, president of the International Lyme and Associated Diseases Society, treats patients with Lyme disease in his private practice in Mt. Kisco, New York. Follow him on Twitter and Facebook. His website is danielcameronmd.com.
- July 9, 2015 at 2:35 pm
What bunch of sh…… Any one who talks like this even if you are not a doctor needs to be infected with this disease. Paul Lantos you should be ashamed of yourself. Who are you to make up the rules for a disease you know nothing about. It takes away your life. I lost two and a half years and if it wasn’t for antibiotics I probably wouldn’t be here now.
- July 18, 2015 at 4:16 am
Totally agree with you Barbary Cormack. I am a scientist myself and I feel ashamed for the mindset of many doctors, they are nothing more than commercials for Big Pharma. Disgusting.
- July 18, 2015 at 8:19 am
My sister had been dealing with chronic Lyme for years now and it just seems like they don’t know what to treat her with so they keep changing to a different antibiotic every couple months. Supposedly this doctor treating her is a ” Lyme specialist” who knows what she’s doing. But she’s not getting any better and it’s almost been a year under her care. She remains optimistic because there isn’t any other alternative at this point. It’s frustrating to say the least.
- August 3, 2015 at 2:54 pm
I started to feel somewhat better after 4 years on Antibiotisc.First two years i ws misserable and thowing up a lot. Now I am exploring the Medical Canabis Juice and Essential Oils. People get into remission with those. maybe it is time for something else for your sister. I finaly found the doctor who accepts my insurance and know how to treat Lyme. He told me to use Borax 1/8 of teaspoon in glass of water for Yeast Infection drink it every day. You can get it in Ace Hardware, and yes it is 20 Mule something Borax. Pass this info to your sister and good luck.
- July 11, 2015 at 1:04 pm
Perfectly stated, Dr. Cameron. Thank you.
- August 3, 2015 at 3:48 am
Perfectly stated by a medical/insurance industry tool. Yes, let’s not treat them for physical illness, let’s treat them like mental patients. Because it’s too costly to actually figure this out and offer adequate treatment.
- July 30, 2015 at 4:04 pm
So sad my husband is going for his second visit to Duke infectious disease clinic Monday. The doctor he saw a month ago told my husband his symptoms were not the ones of Lyme after he tested positive for 4 of the markers his primary care doctor put him on the antibiotics. My husband told me his symptoms and I convinced the doctor to test for Lyme. the visit after being tested for 16 other things have come back negative and Monday he is being tested for more. This article makes me have no hope for anyone at this clinic at Duke. Dr. Lantos I will be there with my husband Monday and will not be convinced you have any concern for human life and the pain my husband has been through.
- August 3, 2015 at 3:50 am
I hope your husband finds some relief. You might Google ‘teasel root tincture’, the German herbalists have had luck with it and chronic Lyme, I’ve been taking it for a month or so and it does seem to help. It isn’t a replacement for conventional medicine, it’s an aid.
- August 3, 2015 at 3:00 pm
RUN!!!!!!!! from that place
I learned that you just find someone who know how to treat and mostly acknowledges the existence of Lyme, you will just get upset, get him out of there.
He may die until you make anyone at that place believe that he has Lyme. Better Google someone in your area who treats Lyme and accepts your insurance.
- August 3, 2015 at 9:02 am
It is clear this “doctor” has never actually had lyme disease. I think if he felt the symptoms himself he wouldn’t be so dismissive about the suffering of chronic lyme patients. Thankfully, some doctors have actually studied chronic lyme and can successfully treat many patients. I have had lyme disease since 2001. My life has been completely changed and no one can tell me it isn’t real. If people have to visit these “doctors” they may leave feeling even worse than they did. A medical professional denying your illness can have a devastating effect on mental health. This is one of the reasons why chronically ill patients become suicidal. Shame on the IDSA.
- August 3, 2015 at 7:59 pm
Where do I find a current Lyme doctor in the midwest that is still taking on new patients?
- December 6, 2017 at 7:16 am
I was bithen by a lonestar tick in south georgia 6 months ago. 8 days later the bulls eye lesion appeared. 11, maybe 12 days after the bite I took doxycycline for 10 days. Here I am, 6 months later, suffering from weird symptoms along with headaches, my arthritis is off the scale, digestive problems, all the usual, how be it, not all at the same time. Any words of wisdom?
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