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Findings from a study by Johnson and Maloney, “Access to Care in Lyme Disease: Clinician Barriers to Providing Care,” provide some insight into why clinicians may be hesitant in treating Lyme disease.¹
“The primary goal of this study was to identify the challenges faced by clinicians who provide care for patients with PLD/CLD,” the authors wrote. And, in so doing, may identify potential solutions that assist with recruiting and retaining more clinicians in treating Lyme disease.
The authors surveyed 155 clinicians from 30 states in the U.S. who treat patients with post-Lyme disease/Chronic Lyme disease (PLD/CLD).
Clinicians reported that the barriers to providing care included: complexity of care (79%), cognitive impairment of patients (57%), and frequent calls from these patients between their scheduled appointments (49%).
The authors included comments by clinicians which addressed several of these issues.
Complexity of Care
“Lyme disease is the hardest diagnosis I treat as each patient responds so differently to therapy, it is hard to know where to start with each one, what will work, what will make them worse, etc. Some just never seem to get better no matter what I do. It is gratifying to see others improve.”
“I think the most difficult problem is the cost of providing this amount of complex care on a cash basis. To really review hundreds of records, spend time with the patient and do a proper workup, takes hours. I’d like to see more support for patients and clinicians who chose to help this set of patients.”
Exclusion from Insurance Networks
“I knew that at some point I would be forced to stop taking insurance and move forward on a cash pay only basis. Looking at the numbers, taking commercial insurance for these patients just doesn’t make any sense. I believe the main issue that causes many of these patients to be without access to care is the amount they need to spend on their practitioners plus the out-of-pocket cost for out of network testing, labs and treatment. For most of these patients that it is anywhere from $10 to $20K per year. It is a heavy burden”
Stigmatized or Disrespected by Colleagues
“Three-quarters of respondents report having been stigmatized or treated disrespectfully by professional colleagues because they treat Lyme disease,” wrote the authors.
3 out of 4 doctors treating patients with post-Lyme disease/chronic Lyme disease report being stigmatized or treated disrespectfully by colleagues.
This was demonstrated in several ways: 1) lack of professional support from colleagues, 2) opposition to treatment of PLD/CLD from some physician organizations, 3) limited ability to share office and practice burdens with colleagues and 4) being excluded from participating in insurance networks.
“While my patients are generally very supportive, some of my colleagues have stopped speaking to me and I worry about the medico-legal repercussions of what I do.”
Physicians Reprimanded by Regulatory Organizations
“Nearly 4 in 10 physicians (39%) reported having been reported to a medical board, an insurer, or subjected to a hospital-based quality improvement inquiry,” wrote the authors.
With the number of cases of Lyme disease growing, the demand for doctors treating post-Lyme disease/Chronic Lyme disease will continue to increase. In an effort to recruit and retain clinicians willing to treat Lyme disease patients, the authors suggest:
- Improving clinician education regarding PLD/CLD to emphasize the uncertainty that exists regarding its pathogenesis, diagnosis and treatment along with the existence of divergent approaches to care.
- Setting a more professional tone towards treating clinicians to reduce stigma, marginalization, and regulatory burdens.
- Promoting innovative insurance reimbursement models that account for the complexity of care and time commitment necessary to provide care.
Related Articles:
Can Lyme disease trigger a cascade of costly, unnecessary tests?
‘Near-universal’ negative experience with healthcare providers by Lyme disease patients
References:
- Johnson LB, Maloney EL. Access to Care in Lyme Disease: Clinician Barriers to Providing Care. Healthcare (Basel). Sep 27 2022;10(10)doi:10.3390/healthcare10101882
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Thank you for covering this!
I have been experiencing many of the symptoms of Lyme disease and have been tested by a neurologist for every conceivable neuromuscular disorder for the last year. He and my primary care doctor have both declined to order testing for Lyme disease. I have bilateral facial numbness, PVCs, shortness of breath, tingling in my extremities, intermittent joint and muscle pain, dizziness, sleep disturbances, and extreme fatigue . I am an avid golfer and found a tick carcass on my clothes last year. In addition, I had a short term unexplained fever on two occasions in the last couple of years. I’m uncertain as to what to do next. Any advice would be greatly appreciated.
I have colleagues who disagree over whether to consider Lyme disease. I have Lyme disease patients with similar presentations despite extensive evaluations for other illnesses.
Dr. Cameron,
As a Lyme Disease patient, I wanted to thank you for acknowledging that we actually exist and not just sweeping us under the rug as a psychiatric patient since many of our early symptoms aside from the flu-like symptoms, joint pain, and chronic fatigue actually manifest as depression or anxiety. I was misdiagnosed for 10 years because I work in the Medical Field and it was written off as PTSD from the things we see. Thank you for seeing us, respecting us, being willing to hear us and treating us. Sending you much love and respect. Stay strong in the face of adversity that you may face from your fellows. You are saving lives out there.
Thanks for reaching out and sharing you energy.
Hi Danielle, Similar thing happened to me based off my college degree, type of work, and fact that I am obese. It was assumed I am just a hypochondriac with depression. I’m so sorry that you were misdiagnosed too. I wish you great health!
Mark,
Get the Lyme tests even if your GP won’t order it. Find someone who will order it for you. I waited until I was so sick with symptoms before I found someone to order the tests. I have now had Lyme 17 years and wish a doctor would have believed me in 2007. Waiting has disabled me. I knew something was severely wrong. I spent so much money on co-pays, etc. But getting them to listen was bad. They never did. I had to believe me. Believe yourself, Mark. I wish you great health!
When I first got Lyme Disease I was prescribed an antibiotic for a month (after some education by me of my family doctor). After that I had no more help except to be told to go to a Lyme specialist, go to the USA. It was not a cure because the treatment came rather late. I was infected in France while I was visiting my daughter who lives there, so I didn’t get the bullseye rash. I got an oval expanding rash which the family doctors here had never heard of.
Doctors do not treat Lyme disease, because they do not understand the illness and
have difficulties diagnosing the Lyme disease. Plus even properly diagnosed, plenty of doctors do not know how to treat the patient, even making efforts to cure the diseased patient. Doctors rely way too much on hard evidence and blood tests. Lyme disease is treated based on symptoms, not tests, because tests are not reliable and accurate most of the time. Lyme disease is easy treatable in the first stage of the infection, when it is really difficult to diagnose or identify the pathogen causing the infection. Plenty of infected folks are not diagnosed or not treated correctly, because of lack of knowledge or expertise.
Currently battling Lyme disease head on. I have had it for a long time and it went undiagnosed. I was a happy go lucky kid, then all of a sudden I had severe anxiety, mood swings, depression, extreme fatigue, achy body, late puberty…I even ended up with lymphoma! Now at the age of 28 I found out I have had chronic lymes! I always thought something was just inheritably wrong with me. I am BLESSED I found my holistic health practitioner. She is helping me heal. Lyme ruined my hormones, clogged my detox pathways, and left me weakened. It is such a hard road, I get down sometimes, but I know there is light at the end of the tunnel. I could have continued to suffer through life. NO ONE deserves that!
The insurance company executives deserve it. Yes some do deserve it. Nobody can understand this until it happens to them. Then they get a rough introduction to understanding it.
Exactly
Sudden onset anxiety … dismissed from ER despite fever and incoherence. 2 weeks later? A full disseminated rash and seizures. 1 course of antibiotics? Blood work was negative after ten days but for some reason physicians think that means “cured”. Lymphoma appeared 4 years after the initial tick bite and 1 year after further monitoring and intermittent antibiotics were denied. The physicians decided it was all mental…. Until my lymph’s hit 60 percent and I was incontinent and having difficulty walking from nerve inflammation. All my symptoms are now blamed on CLL and aging instead of intracellular parasites. It would be easier to have syphilis or aides or be a drug addict in the US than someone with misdiagnosed Lyme.
I relate waiting for answers. 1st Lymes test was negative, 8 months later I received a positive test. Was unable to work and day to day was struggle every inch of way. Since herbal treatment life has greatly improved but still a challenge that changes in severity daily. Sending good thoughts and prayers during your journey living w Lyme
I tried LYMESTOP. It has helped. They are in Idaho and Wisconsin.
I live in Arizona. I went to the office in Onalaska, WI
I feel like I want to advocate for LYME patients and especially doctors.
Recently diagnosed with chronic Lyme due to symptomology (“migrating” nerve and muscle pain, anxiety) and low HNK1 while blood cells as well as low ALK liver enzyme. Diagnosing doc is a naturopath in Berkeley, CA.
I went to the emergency room .The doctor was very upset and shook his head a ND said I had Lyme disease..a round red circle and when you pressed on the skin around it.it looked like hundreds of things the size of a head of a needle were going up and down in the middle of the circle.Itook antibiotics for 2 weeks and he said I could have trouble with my knees in the furture.Eventualy I did and my new doctor said there is no Lyme disease IN western N. Y..SO I SUFFER.a doctor gave me zethromicine for a cough and my knees got better but Lime moves around and effects so many things.I wish the insurance people and doctors who lie and don’t care would get Lyme so they would know what people suffer.I finally see I have hit a brick wall so a I don’t go to doctors anymore.I pray and try different things but I am so tired after 12 years of this.
I know exactly how this feels. It’s so frustrating. I am obviously not alone.
I just happened to stumble upon this. I’m still trying to figure out whether my issue is Lyme or RA. I have a high Rheumatoid Factor, but have also had Lyme. The high RF was found not long after having been treated for Lyme, about 2 years ago. One doctor said to go on Methotrexate…I want for a second opinion, this Rheumatologist is just monitoring….and found I have a Vitamin D deficiency as well. I have been getting progressively worse, fatigue, pain, anxiety….has really hit an all time high. The Lyme tests keep coming back negative. I was only treated initially with two weeks of Doxy… Even though I told them that I still had symptoms, they refused to continue to treat. All of the symptoms I have, others have mentioned above. It is scary, and hard to know which direction to go in…
Dr. Cameron,
My son has chronic lyme disease. He was misdiagnosed for over 10 years. He has joint pain, trouble sleeping, gets upset for little things, and he has fatigue. I am his mother and have been supporting him for over 10 years. He is unemployable. I understand there is a medication available on in Europe that can help with this horrible disease. Can you please tell me the name of this medication? Thank you.
I am not aware to that medication. Sorry. All the best
My uncle (72 yrs old) with no psychiatric history was admitted to an ER a month ago. He is positive for IgG and IgM Lyme antibodies. He remains hospitalized after a short course of doxycycline, with the presumptive diagnosis of new onset schizophrenia?! The antipsychotics and other psychiatric medications are not helping. I truly believe he needs antibiotics not psychiatric medications. Where can we go for help?