“Cole who was three and a half weeks old at the time spiked a fever at night and I brought him to the local emergency room,” Jillian said.
After the local clinic couldn’t figure out what caused the fever, the Kuhns took Cole to UMass Memorial Children’s Medical Center, where after much testing, they determined he had Babesiosis, a tick-borne blood infection.
Doctors believe Cole obtained the infection during pregnancy as the mother was also infected.
Lyme disease insurance claims show disease rise, rural-urban divide
James Gathany / CDC
Lyme disease levels in the United States have been rising since 2007, and patterns show differences in rural and urban settings, according to new findings released today from a nonprofit health insurance group, which based its analysis on more than 23 billion privately billed insurance claims.
The study from FAIR Health, which studies healthcare costs and health insurance information, found that insurance claims involving Lyme disease diagnosis rose 185% in rural areas from 2007 to 2016, with a smaller 40% increase in urban areas. The group’s findings appear on its Web site.
Lyme disease, caused by Borrelia burgdorferi bacteria, is spread through the bite of blacklegged ticks. Symptoms include fever, headache, fatigue, and a characteristic skin rash. When untreated, the disease can lead to joint, cardiac, and neurological complications.
The US Centers for Disease Control and Prevention (CDC) says about 30,000 Lyme disease infections are reported from states each year, a number it says probably reflects only a fraction of the disease burden.
Timing, ages also vary between rural and urban Lyme claims
In its full report, researchers said it’s not clear how many Lyme disease diagnoses from urban areas are the result of exposure to ticks in city yards and parks or from visits to rural settings.
The peak for Lyme disease claims is June and July, which the group said isn’t surprising. However, it noted that claims during winter and early spring months are more common from urban areas, though the location of the medical visit may vary from the patient’s exposure location.
The age at which patients were diagnosed with Lyme disease varied between the rural-urban divide as well, with rural areas reporting higher numbers of claims for middle-aged and older people and urban areas reporting a larger share of younger people.
Regarding geographic distribution, the insurance claims analysis suggests that Lyme disease is spreading beyond the two traditionally hardest hit areas: the northeast and the upper Midwest. From the review of 2016 claims, North Carolina is now among the five states the highest percentage of claims, and FAIR Health said the disease has apparently found a foothold in the south.
Disease complication findings
To probe the relationship between Lyme disease and other health problems, researchers conducted a retrospective longitudinal study that looked at insurance claims between 2013 and 2017.
The most common diagnoses that came in the wake of a Lyme disease diagnosis were joint pain, fatigue, soft-tissue disorders, and hypothyroidism. When they compared the diagnoses by age to people not affected by Lyme disease, the same conditions still stood out as more common in those sickened by Lyme disease.
“Our data suggest that at least some autoimmune diagnoses correlate with Lyme disease,” they wrote, alluding to previous research studies that have suggested a possible autoimmune reaction link to disease complications.
Panelists Peter L. Salgo, MD; Patricia V. Smith; and Leonard Sigal, MD, discuss research challenges in Lyme disease and allegations on both sides of the debate over the existence of chronic forms of the disease.
**Please see comment at end of article**
Peter L. Salgo, MD: First of all, people with good will are attacking this all the time; we’re looking at this. Second, there are outliers on both sides. People who say, “This isn’t Lyme disease, it can’t be, you’re not sick,” and that you’re crazy, or others will say—and I’m not pointing to you, I’m just saying it’s the other side—“Look at this, Lyme disease can do anything. Therefore, since you’re in an endemic area, you have this, and Lyme can do this—wow—you’ve got Lyme disease.” There has got to be a middle course, right? And because there is no real consensus—I’m going to give you that there is no good testing, that we would rather have a better test—what is the impact on patients who hear this? This is medical noise. What do patients think when they hear all of this?
Patricia V. Smith: I can tell you that patients are very frustrated, and many of them have had Lyme disease for decades—and despite what some people’s opinions may be, it started out as Lyme disease. The patients see the research out there that there are things now called persisters, which just don’t appear in Lyme, but also appear in other diseases. But does the establishment want to recognize these studies that are being done at places like John Hopkins and Northeastern University by great researchers? They are doing it in laboratory settings, and the plan is to go on with animal and human studies. They are looking at other types of antibiotics, combinations of antibiotics, and whether or not pulsing doses might help. And yet, no one wants to acknowledge that perhaps these people really do have Lyme disease and they say to themselves, “Well, I’m looking at this. Maybe I’m one of these people.”
Leonard Sigal, MD: What do you mean by no one?
Peter L. Salgo, MD: I was just going to address it, which is that you said 2 things that are very provocative.One is the establishment—whatever that “them” might be—and that nobody wants to hear it. Who’s nobody?
Patricia V. Smith: Well, I’ll be honest. After 33 years, I can say if it wasn’t for the International Lyme and Associated Diseases Society, most of the patients that I have seen across the country—children who have Lyme disease, and their parents—they would not have anyone to turn to, to try to help them figure out just exactly what they do have. And contrary to some opinions, these doctors do not always diagnose Lyme. It’s just that people go to them because they have signs and symptoms. Lyme disease appears to certainly be in the mix, and they may have a history of that. Now, just because they get 3 weeks of doxycycline, I certainly think that the literature has shown that that is not necessarily a situation where that will be clear.
Leonard Sigal, MD: You’ll forgive me, but define no one: you haven’t defined the establishment.
Peter L. Salgo, MD: I’m trying to understand, because the implication in your statement is that there was some vast conspiracy to ignore Lyme disease. Is that what you really think?
Patricia V. Smith: Yes, I absolutely do, and I am not a conspiracy theorist. I have lived with it. I had 2 daughters diagnosed with it in the ´90s. One of my daughters was out of school 4 full years and 2 partial years. I would not have believed what my daughter went through, or what other patients went through, perhaps if I did not live with it.
Leonard Sigal, MD: What is the conspiracy? I want to preface my question by saying that there have been many, many accusations against many, many academic clinicians and others, that there is some sort of a conspiracy. So, you’re the perfect person. I’m not being facetious. You’re the perfect person to explain to us and to the people over there what this conspiracy is, and who’s behind it.
Peter L. Salgo, MD: And why?
Patricia V. Smith: Well, I certainly don’t know who’s behind it. I wish I did know. I do know that the government and certain medical societies take a very strong opinion. When I saw this happen, it was in the late ´80s approaching into the ´90s, and Lyme disease at that time was basically considered to be an arthritic disease. And there were a lot of rheumatologists involved. Quite frankly, there was a lot of money for that research, and so, there’s thinking out there—and a lot of patients feel this way, and some researchers, clinicians, and others—that perhaps what happened was, because that occurred, that changed the course of the disease: not just changed it physically, but into a disease that now we see there are a lot of neurologic implications.The fact that then these people, quite frankly, wanted their money. And so, perhaps it was a case of vested interest.
Peter L. Salgo, MD: But isn’t that money spent on Lyme research?
Patricia V. Smith: Not necessarily.
Leonard Sigal, MD: I beg to differ with you. NIH funds that are designated for research in sarcoidosis have to be used in research on sarcoidosis. If they’re not, then the investigator, first of all, will never get another grant and, second of all, is in deep trouble, because there’s malfeasance. Monies that were given by the NIH and other organizations to do research on Lyme disease were, first of all, never enough, I can assure you, and, second of all, never went into the pocket of any researcher, because those allegations have been made. Those monies went to pay technicians, they went to buy test tubes, and they went to pay for animal husbandry. That money was always properly spent. First, there’s an undercurrent to many of these conversations that, somehow, there’s this nefarious self-interest amongst people who are getting funds for research. That’s really not true. These are scientists who are trying to do their best. Now, there are other people who believe in a very different approach to Lyme disease or believe many different things about Lyme disease. They are welcome to approach the NIH to get funds for their research as well. They are certainly welcome to submit those papers to the top tier journals. If all these are done properly—the paper is written properly, if the grant is written properly—they’ll be taken into consideration. You can’t assume that the NIH is in on this vast conspiracy.
Patricia V. Smith: In 2012, there were hearings in Congress in the House Foreign Affairs Committee. I testified there, and some researchers testified. And a researcher who testified, a prominent researcher in the field of Lyme disease and animal work, said that in the NIH with the grant process, there were serious issues with how that process was carried out. Because, at any time, if someone wanted to do a study and said they were looking at chronic Lyme, those grants were just not considered. Apparently, those who sat in peer review didn’t really want to look at chronic Lyme because they had another bias. So, what happened was that the same kinds of studies were funded year after year after year instead of the kinds of research that really needed to be done. For example, research on new cutting-edge testing. We’re driving the horse and buggy in the testing area when we should be flying out to Saturn with the testing area. We have none of that, and none of that was done.
Peter L. Salgo, MD: I’m sure Saturn was a random choice.
Patricia V. Smith: Just one more thing.
Peter L. Salgo, MD: You’ve got about 30 more seconds, because we have to move on.
Patricia V. Smith: There were 4 treatment trials that were funded by the NIH. The conclusions on those trials were vastly broad-brushed, and I believe the doctors will probably address that issue. That was so detrimental to patients, because it said that antibiotics do not help, long-term, with Lyme disease patients. They could not make that conclusion based on that study.
**Comment**
This discussion is truly a crux of the matter. What is hilarious, if not maddening, is Sigal’s incredulous disbelief in a “conspiracy.” This is the same man that appears in journalist, Pam Weintraub’s book, Cure Unknown Inside the Lyme Epidemic. (Excellent book)
On page 12, “Skeptical of chronic Lyme disease as an explanation of ongoing symptoms, Sigal often diagnosed such patients as having fibromyalgia, a pain syndrome, instead.”
Page 271, “The New York Times quote of the day was from Leonard Sigal” ‘Lyme disease, although a problem, is not nearly as big a problem as most people think. The bigger epidemic is Lyme anxiety.‘”
Page 306, “Leonard Sigal, for instance, consulted for Prudential, Aetna, Blue Cross Blue Shield, Anthem, and Metropolitan Life, passing diagnostic and treatment decrees. His fee was $560 an hour in 1996, though he worked for a day rate as well. Sigal was not alone: Other top academics consulted too. The consultancy fees would ‘pay for a lot of college tuition, actually, ‘ Sigal had quipped under oath,when testifying against a patient’s diagnosis of Lyme.”
Page 316, “It didn’t take long for two competing pharmaceutical giants – SmithKline Beecham and Pasteur Merieux Connaught – to launch two potential products (creation of the Osp A vaccine). The Connaught effort, with the clinical trial headed by Leonard Sigal, was killed by the company in the wake of lawsuits over side effects.” https://madisonarealymesupportgroup.com/2017/07/01/pbs-lyme-vaccine/ “LYMERIX vaccine caused 640 emergency room visits, 34 life threatening reactions, 77 hospitalizations, 198 disabilities, and 6 deaths.”
Page 366, “Of particular concern are the publications, more prominent in recent months, suggesting that uncured patients are not really sick with Lyme disease, but with a strange psychiatric malaise. ‘Psychiatric comorbidity and other psychological factors distinguishing (chronic Lyme Disease) patients from other patients commonly seen in Lyme disease referral centers, and were related to poor functional outcomes,’ Leonard Sigal wrote in the journal Arthritis and Rheumatism in 2008.”
In sum, Sigal is a doctor who is extremely skeptical of chronic Lyme who obtains hefty fees for consulting against patients, who was actively creating pharmaceutical products relating to Lyme at the same time, and who brazenly states many Lyme patients are not only anxious but psycho to boot.
Kudos to Pat Smith for not throwing something at him.
Disturbing dreams
Flashbacks of difficult memories
Intrusive or disturbing thoughts
Panic or feelings of dread
Feeling paranoid or unsafe for no reason
Feeling as if you are in a dream or that you aren’t real
If you can identify with these, you may be suffering from post traumatic stress disorder (PTSD) or another trauma disorder. This can be from the impact of a recent event or even be related to painful childhood experiences. Trauma can come in many forms and from many different types of situations. If you are feeling easily agitated, are having mood swings, are having trouble sleeping or notice an increase in drugs or alcohol, you could be experiencing a response to a traumatic event or memory.
Living with the impact of traumatic events can be very challenging. It can cause problems in your relationships as well as your ability to maintain employment. Some people experience trauma due to abuse or neglect in childhood, others have experienced the impact of war or natural disasters. In many of these cases, individuals may have seen someone whose life was in danger or felt afraid for their own physical wellbeing. These types of experiences alter the way we view the world and can hold us back from living our best lives.
TRAUMA IS A COMMON EXPERIENCE IN THE UNITED STATES
Extreme Trauma and PTSD impacts 13 million per year in the United States.
According to the Sidran Institute for Traumatic Stress & Advocacy risk factors for developing PTSD include:
Anyone who has been victimized or has witnessed a violent act, or who has been repeatedly exposed to life-threatening situations. This includes survivors of:
Domestic or intimate partner violence
Rape or sexual assault or abuse
Physical assault such as mugging or carjacking
Other random acts of violence such as those that take place in public, in schools, or in the workplace
Children who are neglected or sexually, physically, or verbally abused, or adults who were abused as children
Survivors of unexpected events in everyday life such as:
Car accidents or fires
Natural disasters, such as tornadoes or earthquakes
Major catastrophic events such as a plane crash or terrorist act
Disasters caused by human error, such as industrial accidents
Combat veterans or civilian victims of war
Those diagnosed with a life-threatening illness or who have undergone invasive medical procedures
Professionals who respond to victims in trauma situations, such as, emergency medical service workers, police, firefighters, military, and search and rescue workers
People who learn of the sudden unexpected death of a close friend or relative
TRAUMA THERAPY CAN HELP YOU RECLAIM YOUR HEALTH AND WELLBEING
Treatment of trauma begins with a trusting relationship. Before meeting, we will speak briefly on the phone. I will answer any questions or concerns you might have, then ask you to complete a brief intake form. This will prepare us for our first session which can last between 60-90 minutes. We focus on providing a safe, supportive environment where we can work together to help you regain a sense of safety, I combine psychodynamic practices and Cognitive Behavioral Therapy (CBT) to address and process the trauma, teach relaxation techniques, and help you form healthy coping skills. This can be combined with desensitization techniques which help you how to respond to memories and stressors at a pace you can control. I also use body oriented therapies to better help you feel safe and reduce physical feelings of panic. Psychotherapy can help you understand and make meaning from painful experiences in a way that can serve you.
You are always in charge of your trauma treatment, and the goal is to always meet you where you are, providing support as you work through challenging thoughts and emotions. Trauma therapy allows you to work on building resiliency and self confidence as well as improved stress management.
BUT YOU MIGHT STILL HAVE QUESTIONS ABOUT TRAUMA THERAPY…
Don’t I have to relive scary memories over and over during trauma therapy?
No. In fact, in some types of therapy, you are never required to revisit or discuss traumatizing events. You are always in control of your treatment and you never have to talk about anything if you don’t want to.
Doesn’t trauma therapy take a long time?
While it’s true that fully healing from trauma can take some time and commitment, feeling relief from the symptoms of trauma should not have to take long. In fact, in our first session we will begin looking for ways that you already feel relief. It is my goal that you leave the first session benefitting from our meeting and walking away with some level of relief.
Isn’t trauma therapy expensive?
Often, when we have had a history of trauma, we might also have a history of being around others that struggle with self care. One aspect of self care is the willingness to invest in ourselves and the trust that our investment will provide a return. Trauma therapy is an opportunity for you to invest in yourself and your wellbeing. I work in a results-oriented way, meaning we will measure your progress as we go along. If you feel we are going in the wrong direction, we re evaluate and adjust. The goal for all therapy is that it is a valuable, life-changing investment for you.
Still have questions? Feel free to call – 347.994.9301 for a free 20 minute consultation.
**Comment**
I posted this article because Lyme/MSIDS patients ALL deal with trauma to various degrees. Being infected with numerous infections that can cause all manner of psychiatric and cognitive issues is traumatic enough; however, we all bring varying amounts of baggage into the illness with us which will undoubtedly raise its ugly head at some point.
Often, the previous ways we handle stress and trauma no longer seem to work and we need help navigating these new and unknown waters. Never view needing psychiatric help as a failure but rather look at it as becoming better equipped to handle this new journey you are on. It can make ALL the difference in your journey.
MetLife Discrimination Against Chronic Lyme Patient Engages Senior Vice President of Global Benefits for Comcast and NBCUniversal and an International Human Rights Expert
In 2016, international human rights expert Jenna Luché-Thayer and founder of the Global Response to Borreliosis and Coinfections Consortium (Global RBCC) responded to a cry for help from Jane Furer, an NBCLA producer who is living with chronic Lyme. Jane’s illness had led to her being unable to work for a year, and even though the State of California had provided her short-term disability benefits, insurer MetLife refused to cover her longer-term disability.
Luché-Thayer then secured documentation demonstrating how MetLife made bad faith practices and discriminated against Jane Furer. This discrimination is based on Jane’s suffering from a chronic and complicated case of Lyme disease. According to Luché-Thayer, MetLife and other insurance companies routinely deny benefits to persons living with chronic Lyme despite the Affordable Care Act’s (ACA) formal recognition of chronic Lyme disease in 2012. Not only does the ACA recognize chronic Lyme, the federal Job Accommodation Network (JAN) also recognizes chronic Lyme and assists those who suffer from this illness to receive disability benefits. JAN is a service provided by the Department of Labor to support the Americans with Disabilities Act.
MetLife’s denial of Jane’s benefits was based on the outdated science found in the 2006 Infectious Diseases Society of America’s Lyme disease guidelines –these outdated guidelines do not meet the Institute of Medicine’s (IOM) internationally accepted 2011 standards for guidelines and they do not recognize chronic Lyme disease. MetLife’s practice of discrimination is demonstrated by their refusal to adopt Lyme treatment guidelines that do meet the IOM 2011 standards –these updated guidelines recognize chronic Lyme and the many debilitations and disability it may cause.
Luché-Thayer also found that MetLife fraudulently misrepresented their legal responsibility for Jane’s coverage –as well as that of Jane’s employer– in correspondence to a senior official with the state of Pennsylvania’s Insurance Department. Luché-Thayer brought this to the attention of Comcast/ NBCUniversal.
Shawn Leavitt, the Senior Vice President of Global Benefits for Comcast and NBCUniversal, personally engaged to try and address the situation. Leavitt expressed concern and has since facilitated collaboration between Global RBCC and key medical staff at Comcast and NBCUniversal resulting in the dissemination of updated science on Lyme disease. Most recently, an interactive quiz on Lyme disease –developed by Dr. Holly Ahern, professor of microbiology and member of Global RBCC– was used as an educational tool for Comcast employees. When Jane heard about the quiz, she said, “I am glad to know my situation might help other Comcast and NBCUniversal employees.”
In June 2017, Luché-Thayer organized an international team of scientists, medical professionals, human rights experts and patient advocates to testify before the United Nations Special Rapporteur responsible for health and human rights. The human rights violations validated included the obstruction to treatment options and coverage for the many confirmed serious complications and disability caused by Lyme disease.
In the meanwhile, NBCLA producer Jane Furer remains uncompensated for her extended period of disability that left her unable to work. With support from NBCUniversal, she is working less than full time under the protection of the Americans with Disabilities Act and while still under significant therapy, including intravenous treatment taken at her desk.
Much of this treatment is not covered because most health insurers use the outdated 2006 IDSA guidelines to determine treatment coverage as opposed to the protocols that have met the 2011 IOM standards. Jane asks, “How can I possibly afford to pay for policies that do not cover my Lyme disease expenses … particularly when I have children to care for and I used up all available financial resources because MetLife refused to provide my disability coverage?”
Luché-Thayer believes such practices of discrimination could be quickly overturned when employers realize just how much it is costing them in loss of skilled labor, productivity and absenteeism. For example, according to the CDC, Lyme disease is found in 48 states. Based on the CDC’s conservative estimate of annual Lyme disease infection, their 2017 article on persistent infection and their 2006 study on the cost of Lyme disease, Lyme disease may already be costing Comcast/NBCUniversal over four million dollars per year for new infections.
Says Luché-Thayer, “This calculation of four million does not include the estimated 36 percent of those infected who will develop long-term illness that is often not covered by insurance. This illness causes significant financial stress for employers, employees and their families.” For example, based on CDC infection estimates, between 2011 and 2017, more than 3200 new Lyme patients and 1000 new chronically ill Lyme patients needed medical, or medical and disability coverage from their Comcast/NBCUniversal employee benefits packages.
Lyme patients – including many who go undiagnosed due to the low accuracy of the standard tests– may have compromised function and neurological symptoms that impair driving, vision, climbing, technical proficiency, and judgement. These impairments are considered serious enough that federal authorities such as the Federal Aviation Administration ground infected pilots until they are six months clear of Lyme symptoms.
Luché-Thayer asks, “Why would any major employer allow for their employee benefits to not properly cover the treatments and disabilities caused by the fastest growing vector borne disease in the nation?”
Madison Area Lyme Support Group 