The diagnosing and treatment of Lyme and tick borne illnesses present a conflict in the medical community that some even deem a conspiracy. Why? I do not know why, but the basics of what has happened is the result of poor testing, and inadequate interpretation of data on the medical side leading to a great lack of consensus. On the patient end there exists an equal lack of agreement with so many choices of treatments, some of which do nothing for people who need a lot. These ends clash and cause a large gap in quality communication, leaving many patients confused and further vulnerable to poor quality of care across the spectrum.
I have a rather agnostic perspective when it comes to the disparate viewpoints. Clearly Lyme disease is not a minor, easily resolved infection unless caught very early, and maybe not even then. I am unconvinced it is the cause of all medical syndromes of unknown etiology. I do believe antibiotics are necessary, while I also believe they are not the only pathway to wellness. However, there exists a great number of practitioners and non-medical professionals that peddle pseudo-scientific solutions. There are wands with electrodes diagnosing illnesses and directing treatments, electromagnetic pulses tuned to kill specific bacteria, miracle proprietary herbs. Patients overwhelmed by illness find these voices at times the only validation, leading people to be under treated and over inflated with false, unfounded notions of cure. The conventional path is no better.
I was bitten by a tick over 10 years ago. Being poorly educated on tick removal, I panicked and tried burning it off with a paper clip. If you’re cringing over this, that may be because you know that by doing that I caused the creature to regurgitate the contents of its gut greatly increasing the odds of infection. I then ended up digging pieces out. I knew at least to do that. I did not connect this to the following flu that lasted weeks. I lost my job due to crushing fatigue as I slept through the early morning calls for substitute teaching. I began to have nerve pain in my shoulder. A doctor who drew blood for a Lyme test, said, “Come back and do it again in two weeks, these tests are often wrong.” I felt better. I didn’t go back. For the next decade, I had arthritic like back pain (I was in my twenties), insomnia, obsessive and compulsive habits, weight gain, gastrointestinal issues, transient pain in my arms, shoulders, and neck. What did my new doctor say? “Lose weight”. I lost weight, but didn’t feel better. He then said I was too stressed. This went on for years. Then one day both my feet went numb, symmetrically. I was getting lost on my way home, had intense pain throughout my body. Clearly I was very stressed. The doctor confirmed I was stressed after negative tests for diabetes, vitamin B deficiency and syphilis. He said if it wasn’t better in 6 months, we would discuss maybe MS or ALS. This did not alleviate my stress.
Had I stayed in his care, that may have been where I ended up. I have worked with my current physician to exhaustively rule out other causes of my neuropathy. But as I continually improve with aggressive antibiotic treatment this confirms the cause. I know at this point I am not getting worse. I have gained significant ground, but I lived untreated for so long that I know I will not get back to where I was. At no point has any of the controversy related to Lyme helped me get better. I worry that for some it is merely a focus for their anger over being ill and living with such a poorly understood disease. It seems on both ends of this controversial range it is the lack of acceptance over the ambiguity of Lyme and tick illnesses that creates problems for the patient and practitioner. There are many paths to wellness. Nothing is either/or. I must continually be open to other possibilities and expect the same from those who help me along the way. I continue my search for what works to improve my well-being and my work in helping others.
It is that time of year again. While we enjoy the outdoors, the sunshine and the fresh air, unfortunately we are at the greatest risk for contracting tick borne illnesses like Lyme disease. Some may know that I lived undiagnosed with both bartonella and Lyme until it became neurological and debilitating, forever altering my way of life and that of my family.
I came across an article recently, I will quote a paragraph and provide the link for the full text. This study discusses the true need for awareness among mental health professionals and those struggling with mental illness to rule out these collections of infections.
Currently, there are over 40,000 well-documented and many more undocumented suicides in the US each year, and many are unexplained. A number of infectious diseases, and in particular chronic infectious diseases, have also been associated with suicide. This article analyzes the association between suicide and Lyme and associated diseases (LAD). Based upon the medical literature demonstrating the physiology associated with suicide, a chart review, and epidemiological calculations, it was demonstrated there is a causal relationship between LAD and suicide, and the pathophysiology of LAD can be explained and it causes a significant number of suicides. LAD causes immune effects, biochemical changes, and a number of psychiatric symptoms that contribute to suicidal risk. By indirect calculations, it is estimated there are possibly over 1,200 LAD suicides in the US per year.
“Suicide and Lyme and associated diseases”, Robert C Bransfield, Neupsychiatric Disease and Treatment, June 2017
Apparently no one of particular note or fame said it, but it is an important summation, I think. That is: “before you diagnose yourself depressed or with low self-esteem, make sure you are not in fact surrounded by a@#%oles” (http://quoteinvestigator.com/2014/10/25/diagnose/). This is an amusing way of talking about how our environment, physical and personal are tremendous influences on our perceptions of self. Many underestimate the impact a difficult workplace, or toxic relationship that may exacerbate or be the direct cause of stress.
When examining effects of the work place, the CDC website states these statistics:
One-fourth of employees view their jobs as the number one stressor in their lives.-Northwestern National Life
Three-fourths of employees believe the worker has more on-the-job stress than a generation ago.-Princeton Survey Research Associates
Problems at work are more strongly associated with health complaints than are any other life stressor-more so than even financial problems or family problems.-St. Paul Fire and Marine Innsuance co. (http://www.cdc.gov/niosh/docs/99-101/)
One can start to look ahead at the trickle down effects when one considers the workplace is where most people spend the majority of their time. The effects on family and personal relationships can follow.
So, what helps? Studies show perspective shifts are among the greatest tools we have to combat ill effects of stress. That is not to say only look at the bright side, but to see the gains that can come from the struggle. Counseling and talk therapy are an excellent tools to help gain these skills and provide relief from what is often inescapable. Counseling can help in making gains to acquire what one wants in life and not avoiding what is unwanted or difficult.
A man came into my office and tells me, in a blacked out rage, he physically assaulted his wife. Nothing like this had happened before, he stated. Other sources, including his wife, attested he had never been violent. When talking it became clear that he and his wife had increasingly been irritable with each other especially in the evenings. Discussing matters further, he was diabetic and had not been managing his medications and diet properly.
Here is an excerpt from an article in Psychology Today that presents this particular issue very well:
Humans are built like all the other animals—and animals get very unhappy when blood sugar is low. It is an evolutionary mechanism that is designed to make finding food a priority. This priority is important, for it helps to avoid starvation. But in us humans, low blood sugar can have a very negative effect on mood.
While the primitive animal goes into food-finding mode, sometimes our more complex human brain doesn’t realize it is a food issue, and instead simply feels anxious, depressed, angry, or even all three. That primitive part of us starts to stress about other issues (work, relationships) and the real culprit—low blood sugar—is not addressed.
There are often underlying medical conditions that contribute, if not outright cause, expressions of mental health disorders. If that client had not disclosed his diabetes, I’d have been trying to help him with intermittent explosive disorder, and it would not have helped. Instead I was able to focus on the communication with his wife, helping to alter language that reduces irritability, and worked with his physician to help him manage his diabetes. And wouldn’t you know, it got a lot better?
Too often health practitioners, therapists, doctors, psychiatrists, sometimes get lost following the rabbit hole of symptom management and forget to look upstream. As a rule the most easily addressed and treatable issues should be ruled out first. To mix metaphors, if one hears the beat of hooves, don’t expect to see an okapi coming over the hill.
Other conditions such as thyroid, and other hormonal conditions, blood pressure, diet, toxic exposures, infections can cause a wide array of mood and other psychiatric conditions. Kidney dysfunction can present as delirium, anxiety, panic, depression. Given all the variables it is important to find practitioners one trusts and are open to examining all possibilities, those who view the whole person and not just the injury.
This is not about the fear of spiders. This is about the lesser known, less often considered arachnid: the tick. For those who know or have experienced this small creatures abilities, they may be the scariest thing in the woods. Beyond their near invisibility, and penchant for sucking blood, they harbor a stealthy and persistent host of diseases that have the ability and seem to increasingly cause life changing symptom presentations. These are sometimes subtle and pervasive, sometimes overt and crippling, or both. While this may be known to many, what may be even less well known are the many neurological and psychiatric symptoms of Lyme and other tick borne diseases (TBD).
Lyme is known to present it self as virtually every available diagnosis in the Diagnostic and Statistical Manual (DSM). This is the manual defining known mental illnesses. In particular Lyme has the ability to exacerbate or create significant anxiety and panic conditions, disorientation, obsessive compulsive disorder, sleep disturbance, depression. Some may even experience psychotic symptoms. In my clinical experience while working in central Maine, a Lyme hot spot, I saw a disproportionate amount of people with treatment resistant mental illness coupled with chronic diseases such as fibromyalgia, unexplained seizures, and unknown autoimmune issues. This is not atypical, however, for patients with undiagnosed or under treated Lyme disease. If only I had known then what I know now.
Experiencing prolonged mental health symptoms, specifically things such as panic or markedly increased anxiety and/or obsessive compulsiveness, depression, insomnia, coupled with physical symptoms such as recurring fevers, neuropathic pain, migraines, fibromyalgia, or fatigue, one should consult their physician about ruling out Lyme disease or other tick borne infections. Potentially one might experience disorientation, such as driving and not knowing momentarily where you are or where you are going. Many experience aphasia, either forgetting or scrambling words, and other forms of confusion. Here are some links to more complete listing of symptoms associated with Lyme and other tick borne infections:
In addition I highly recommend the film Under Our Skin, and it’s sequel Emergence available on youtube.
They are powerful documentaries that will scare the pants off you, but more important will help illustrate this very complex disease and the even odder culture that surrounds diagnosis and treatment. It is very difficult to find good guidance with appropriate knowledge towards the right treatment course. There are so many conflicting points of view and some result in great harm to the patient. In my practice I work hard to advocate and make use of my specific knowledge to empower clients to manage and take command of their healthcare.
Sometimes it doesn’t matter how a problem began, it just needs to end. However, many times the phrase those who cannot remember the past are condemned to repeat it, while simplistic, often rings true. This concept is well illustrated in addiction, or substance dependence.While insight is not enough to cure all our ills, it is also not enough to merely change behavior either.
Cigarette smoking: how many people smoke and are unaware of the health risks? Insight is not enough. If knowing smoking kills was all that was needed, no one would smoke. On the other end, how many more people used to smoke before they were aware of the health risks?
With addiction it is important to explore why one’s dependency developed in the first place. Otherwise, life will continue to present the circumstances with which one needs to cope: relationships, grief, employment, family, friends, financial stress, emotional stress, other people using substances. The list can be endless if one does not learn those circumstances that are most triggering.
There are several perspectives on causes of addiction. Environmental: it is the place, people and circumstances around someone that drive one to use substances. Genetic: people are born with “predispositions” that put them at risk of addiction. Learned behavior: using solves a problem or enhances an event in a meaningful way creating the desire to keep using. There are more nuanced variations of each of these, but these are the core principles. Nature vs. nurture. The answer is all of the above, nature and nurture. Our genes, and unconscious drives, and our overt efforts interact constantly to create the interactive versions of us that everyone knows and we know of ourselves. People can be born into the same circumstances and grow up completely differently. People can experience the same event, and because of the history and biological differences, they will have completely different perceptions of that same event. This is why there are some who are able to use drugs and alcohol and not become addicted, and those who are seemingly unable to avoid it.
When working with people who have long term substance use disorders, behavior and insight need to be enhanced. Once use is stopped, or greatly reduced, one’s personal causes of addiction can start to be understood. The behavior protects the present goals and the insight protects the future behavior.
Lately not a single day goes by here in Portland, Maine without an opiate related overdose. Working as a therapist and substance abuse counselor, not a single life I encounter is left untouched by this disease. Why now? Why the sudden increase? I have some thoughts. Working in community mental health I noticed, as I’m sure many others did, a steady increase years ago. In fact, it was predicted when Maine discontinued its medicaid coverage for medicated assisted treatment (Methadone, Suboxone) for those receiving treatment longer than two years. When this law passed it was retroactive. This meant that many people’s coverage for the medication that had helped many of them return to a life focused on their values was suddenly gone. Over the next few years pharmacy robberies increased, and heroin overdoses increased, dramatically. A strip of Suboxone on the street is $20 a dose, heroin can be $10 or less. Now there is a cheap and regular supply of heroin in Maine from increased demand due in part from state legislation.
But why use it in the first place? I will borrow ideas put forth in this Ted Talk (see link below). What most people understand about addiction and drug use is from early research with rats in cages with just two water bottles. One bottle has drugs in it, the other does not. The rats drink the drug water compulsively until they die. Thus we draw the conclusion that if we go out and use addictive drugs enough times in a row we will become addicted. What’s really interesting is this is not at all true. Only a small percentage of people become dependent on drugs. “According to the Institute of Medicine of the National Academy of Science, 32 percent of people who try tobacco become dependent, as do 23 percent of those who try heroin, 17 percent who try cocaine, 15 percent who try alcohol and 9 percent who try marijuana” (see link below). Therefore, it’s not the drug.
Later rat experiments tried putting them not in empty cages, but with everything and anything a rat could possibly want, including other rats. Nobody overdosed, nobody became dependent, they hardly used. When one works with people dependent on drugs, none of them feel well connected, nor loved, nor understood. Another addiction specialist, Gabor Maté, said “we shouldn’t look at what is wrong with the addiction, but what is right about it.” That is to say, what is the problem it is fixing? If we are anything like rats in cages, which for a long time now scientists have felt it a reasonable model, than the problem is that of connection. People who are dependent and addicted are feeling disconnected when they start using. When we notice, how does society treat them,? With compassionate open arms, inviting them to return to the fold?
When trying to help those dependent on using substances to cope, it is important to understand this idea of connection. It is important to not judge, maintain a kind and compassionate disposition. A deer in the meadow will flee when approached head on. If a kind offer of an apple is left to be taken when wanted, than a connection becomes possible.