Lyme Disease: Stories From the Front Lines of An Epidemic – Jillian Cote

As what follows is a copyrighted academic paper used with permission, I am not going to change it in any way.

My only comment here is that I spoke to Jillian several times during the course of my researches and found her well worth listening to.

You will note I left her full name on this page. Since this is a published work that was only appropriate. Credit where credit is due.

You will also find her related links at the bottom of the page.

 

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Lyme Disease And Mental Health; Is There A Connection?

Jillian Cote

Introduction

Lyme disease is a very controversial and complex disease. Many people believe it was originally found in the United States in Lyme, Connecticut. It was originally thought to be a disease that was central to that area and then the Northeastern United States. Another Original thought was that this disease was transmitted through the bite of a deer tick. Early in the history of Lyme disease it was also believed to be a disease that caused mainly arthritic symptoms and was not considered to be very serious. However after many years since its discovery, many more people becoming infected, the disease spreading, and much more research, all of the “early” beliefs are now being questioned or built upon. With all of the research a few answers have come about, however more and more questions seem to arise almost daily. One of the most frustrating and challenging aspects of Lyme disease is when it comes to Lyme disease and a person’s mental health, what effects does Lyme disease have? Does is cause mental illness? Make it worse?

Why I Chose This Subject

This is a subject matter that is very close to home for me as I personally struggle with the debilitating disease myself. Looking back my mother and I can now remember when I was bitten by a tick, although I never had a rash and we never thought very much of it; it was just a “bug bite”. I progressively over the next few years got sicker and sicker. My symptoms looked to many people “odd”; I would get sinus infections at least once a month, a migraine headache at least once a week. Then the fatigue hit, and the joint pain, and slowly my memory got really bad, and my vision would double. We had no idea what was going on! I was tested for everything and nothing was found. I was told I was crazy, depressed, making it up. I was finally directed to a Lyme disease specialist by a close friend, since we had tried everything else why not? The big downfall, insurance doesn’t cover them, or they don’t take insurance due to controversial reasons, and they are pretty pricey! Regardless I went, and after extensive testing, brain specs, spinal taps, MRI, and lab work sent to a special lab in California, I finally had a diagnosis!

The specialist had found the Lyme disease in my spinal fluid!

With that my journey continued with treatment, and periods of remission, but this is a nasty disease, and for most of us affected by it, it will end up being a lifelong companion and challenge. My personal experience is very similar to many other who have suffered from this disease in that we all face the same struggles, road blocks, and ultimate frustration. My experience is different though because this disease is unique to each individual, my symptoms present slightly differently than other individuals. I also must add that so far even though it has been a struggle with lots of pain and frustration, I know that so far I am lucky because from what we can tell the Lyme disease has not gotten to any of my organs, but it is in my spinal fluid which means that it is affecting my central nervous system.

This disease does not only cause many physical pains and symptoms but it can seem to cause a great deal of emotional or mental health issues as well. Depression, anxiety, and ADHD are just a few that I know of personally. Many people find it pretty realistic to think and understand that if you are consistently sick you would get depressed, that makes sense. However the depression you experience with Lyme disease is in a way different and harder to treat. I personally have seen a few different Lyme disease specialists and also a psychologist who is very Lyme literate so that there would be no issues with any medication interactions or other issues. I have also personally spoken to a researcher who has dedicated his life to Lyme disease research and suffers from the disease himself. I do not feel that I am in anyway an “expert” on this disease, as I myself find new information every day, but I keep myself informed so that I can at least attempt to keep my health care as up to speed as possible. One of the big issues I have run into with the emotional symptoms/mental health is that it is hard to decipher if the Lyme disease is the cause of the disorder or symptoms, or if it has just brought a skeleton out of the closet in a way. So this is where I have tried to focus most of my research.

What is Lyme Disease; The Biology of the Disease and History

In the United States it is believed that Lyme disease was discovered in 1977 in a small town of Lyme, Connecticut; Hence then naming of the disease. This may be when more people started to notice the disease and when it started to really show its presence in the United States but this is not when then disease was actually discovered. Going as far back as 1945 researchers in Europe had already had a large amount of information very similar if not identical to that of the disease we had name “Lyme”. The first actual recorded case of Lyme disease was in Germany as is dated in 1883. In 1909 a Swedish physician, while at a meeting of the Swedish Society of Dermatology, presented research that can be considered in a way ground breaking about a ring like, expanding lesion that he had observed. This physician was Arvid Afzelius, he published his work after 12 years and had hypothesized that this particular rash was caused by the bite of an Ixodes tick. This rash is now know as an “erythema migrans (EM) and can be considered a characteristic sign of Lyme disease as well as used as a tool for diagnosing the disease. Research continued and cases of this disease were showing up in other countries and foundations were formed to help aid in the research. The main “pioneers” of Lyme disease research and discovery were mainly Europeans; however American researchers did do a great deal themselves with research before Lyme disease was “officially” discovered. American researchers did quite a bit of research on ticks and finding out that they were in fact infected with a particular spirochete, Borrelia burgdorferi (Bb).

Now we have an idea of when this nasty little bug (as I like to call it) was first being discovered and when the first research was being done. So now let me try to explain what Lyme disease is. I shouldn’t have to say this, but to cover all the bases and facts I am going to, Lyme disease is a severe illness that is transmitted through the bite of a tick. Not all ticks carry Lyme disease; the most common carrier is the deer tick. Lyme disease is caused by the spirochete Borrelia bufgdoferi, in most writings it is simply listed as Bb. This spirochete is in some ways similar to the one that causes syphilis. Lyme disease is a multi-symptomatic illness which can and in many cases does affect the central nervous system. Individuals with Lyme disease are at a higher risk for co-infections, some of which can also be tick borne illnesses. Lyme disease can relapse many times; can be difficult when it comes to normal immune surveillance and typically antibiotic treatments. The spirochete Bb which is the cause of Lyme disease has a very long replication time and is rapidly transmitted throughout the body. It has the ability to change its impressions of surface antigens and cause what is called an alteration in immunogenicity; this in turn leads to a resistance to normal immunological functions. Bb has the ability within the first few weeks of initial infection to invade the central nervous system (or CNS), continuing on to plague the cerebrospinal fluid (or CSF). Once the spirochete leaves the CSF it can then attach to glial cell (cells in the brain that are particular to the nervous system) as well as other brain tissues. It also penetrates deep into body tissue and other body fluids, not staying in the blood. Once it has entered the CNS it has the ability to genetically alter itself and create a new strain of the spirochete. Some people may not realize that they have Lyme disease for months or even years after being bitten and this is because Lyme disease can have a latency period of months to years before symptoms appear and has the ability of staying in the human body regardless of extensive antibiotic treatment. All of these variations and alterations help to account for why each individual presents with a different array of symptoms and presentation of Lyme disease.

Lyme disease is very difficult to diagnose and there are no definitive treatment guidelines to follow. Even with all of the technology that we have these days, this “little bug” seems to be able to outsmart all most all of our standard diagnostic testing tools, and therefore laboratory test (especially) are unreliable. There is a very high rate of results coming back as a false-negative and sometimes even a false-positive. Bb is extremely difficult to culture and some of the antigens of it are also shared by other spirochetes that cause other diseases thus adding to the problem of diagnoses and misdiagnosing. In order to diagnose Lyme disease the treating doctor needs to make a “clinical” diagnosis, meaning that they need to really talk to the patient and get a full health history, current symptoms, physical exam, neurological exam, and current mental status and then with all of that information interpret their findings based on what research is available. Another problem with diagnosis is that patients can show symptoms that are nonspecific or atypical for Lyme disease, symptoms may also fluctuate in intensity where as one symptom may be present for a few days and then go away for a little while and then come back and repeat. The clinical spectrum of Lyme disease is continually expanding, showing the possibility of more and more symptoms of the disease. Research and knowledge about Lyme disease are always evolving and improving which in many ways is starting to help with the understanding and ability to diagnose Lyme disease but it also can add more confusion depending on how you look at the findings sometimes.

The Stages and Symptoms

Many people have been lead to believe that first symptom and “tell all” of Lyme disease was a “bulls-eye” rash, or medically known as an erythema migrans. This has however been since proven not to be the case; some people do get this rash however, and some estimates suggest that roughly 1/3 of people do not recall getting the rash or getting bit, other estimates are higher. One thing that has recently and finally been agreed on by most of the medical field is that treatment needs to be started immediately and most now agree that aggressive treatment is needed. It is also believed that the sooner a person is treated after getting infected the higher the chance for successful treatment. If an individual is undertreated then Lyme disease will certainly comeback as chronic and with many additional problems or morbidity and even more difficulty with diagnosis and additionally treatment will be much more costly in every sense.

There are believed to be three stages of Lyme disease; acute, early disseminate, and chronic. Some of the symptoms of Lyme disease can include: headache, fatigue, malaise, serious muscle aches and pains, fevers, chills, sore throat, profuse sweating, diarrhea, swollen glands, and joint pain. Symptoms that are typical in later stages of Lyme disease can also include: sleep disturbance, photophobia, extreme irritability, word-finding problems, and dyslexic-like errors. It can also have dermatologic, arthritic, ophthalmologic, cardiac, neurologic, and psychiatric manifestations. For an individual to be diagnosed with Chronic Lyme disease there are typically three criteria that should be met. The first is that the illness has been present for at least one year, secondly there should be persistent major neurological involvement or active arthritic manifestations, and lastly there needs to be an active infection with Bb regardless of any prior antibiotic therapy.

Lyme disease is very unpredictable, new symptoms and signs are being discovered regularly. It also involves so many of the body’s systems and can take so many forms. Not every person will have all the symptoms, each individual presents with a unique set of symptoms. Some cases of Lyme disease are so severe that people are no longer able to continue on with their normal life. This disease mimics many other diseases and because of the weakened immune system puts the individual at risk for many co-infections. The body organs, tissue and all systems are at risk of some sort of damage from Lyme disease, and there is some belief and reports of cases of death.

Mental Effects, Psychological Illness, and Other Possibilities

Because the range of symptoms for Lyme disease is so large I am going to focus on the one that I questioned in the beginning, emotional or mental health. Lyme disease patients have a lot to deal with it, not only are they struggling physically with this disease, but because there is still a certain amount of controversy there are added struggles. There are fights with insurance companies (if they even have insurance), the cost of treatment (that means the actual doctor as well, most Lyme literate specialist do not take insurance any way), finding a Lyme literate doctor, and having some people tell you it’s all “in your head” that you are “symptomatic”. Many individuals even doubt themselves at some point, with symptoms that can be sporadic, new and strange emotional and mood changes, and then medical professionals telling you there is nothing “physically” wrong with you why wouldn’t you doubt yourself? Lyme disease is not necessarily a disease you can always see, many individual suffer inside and look perfectly healthy on the outside for a very long time, and this makes it very confusing and hard for others to believe or understand that they are actually severely ill and in some cases harder to get help or support. All of that alone should be enough to make a person lose it; now add in that some research suggest that Lyme disease can actually cause psychiatric illness or make them worse and harder to treat, I see that as a recipe for disaster!

There are a broad range of psychiatric reactions or disorders that are being associated with Lyme disease, some of these include: paranoia, dementia, schizophrenia, bipolar disorder, panic attacks, major depression, anorexia nervosa, delusions, thought disorder, auditory hallucinations, olfactory hallucinations, visual hallucinations, confusion, personality changes, violent outbursts, catatonia and obsessive-compulsive disorder. Depression or extreme depressive states are the most common affecting an estimate of at least one third of all Lyme disease patients. As I mentioned earlier it is suggested that during diagnosis of Lyme disease while gathering an individual’s clinical profile psychiatric disorders should be included, this can mean a full psychiatric evaluation. Psychiatric evaluations can become very difficult and complicated especially when the individual’s symptoms appear after they have already been through a standard course of antibiotic treatment. In some people the psychiatric manifestations are the predominate symptom and they can range in severity from agitated or depressive states to someone who looks as if they have clinical dementia. Studies have been done and have shown that individuals with Lyme disease do have a higher rate of mental health illness or psychiatric problems. A case study the was done on children with Lyme disease actually showed that behavioral or mood disturbances were the second most common symptom resulting in mood labiality, decreased interest in play, and or poor performance in school; it has also been said to be linked with ADD and ADHD.

The psychiatric symptoms of an individual with Lyme disease are not textbook definition, and these patients do not usually respond well to psychiatric medication. Psychiatric symptoms can get worse as the Lyme bacteria grow more active and reproduce, and they patients may experience “flare-ups” of their psychiatric symptoms as well as the physical, which are often times are triggered by stress. Individuals with Lyme disease tend to be more impulsive, some may become verbally abusive and mean while other withdraw from social settings and lose their self confidence. These individuals have a hard time just going about a daily life and managing daily tasks, which can cause stress and emotional distress. Part of the reason for this is that the part of your brain that deals with signs and signals, like a processing center, can also be affected by Lyme disease. The Lyme disease causes swelling in the brain and thus affects the ability to control your own thoughts, concentrate, and process things. There has also been speculation that temporal lobe seizure may contribute to angry outburst, and other changes.

Lyme disease in some cases has been said to be not only destroying individual lives, but families and marriages. If only one individual in the home has the disease it can be hard for the other members to truly understand and accept. When you add to that frustration and unusual personality changes suddenly in the individual with Lyme disease it can get even harder and more upsetting. If more than one family member has the disease it may be slightly easier for them to understand each other, however you now have two individuals with the same disease and they can be presenting completely different symptoms. Because of the affects the disease has on the brain Lyme disease patients are not as capable at thinking things through, they tend to speak before they think. During an angry outburst, or fit of crying this can turn ugly. In the case of the angry outburst it has been said that Lyme disease plays a role is domestic abuse and is completely overlooked.

There are also some secondary psychological issues that Lyme disease patients tend to face. These consists more of things like low self-esteem, guilt, bitterness, alienation, feeling inadequate, and doubting their own sanity. Individuals with Lyme disease will often say that they feel like they have lost complete control of everything, not just of their body and emotions, but of their ability to even think right and comprehend like they used to or should. Many people are not sure where to go for help, information or treatment. These secondary issues can be just as difficult to deal with as the others. However how an individual approaches their disease, how they learn to cope (and they may need direction on how to do this) will have an impact on the severity of these.

A lot of times if a doctor cannot figure out what is “wrong” with a patient they will suggest that they see a psychiatrist. This is not necessarily a bad thing, considering that Lyme disease has a psychiatric component, but real treatment needs to be addressed from both the mind (psychiatric) and body (physical) standpoints together. If a patient is seen by a psychiatrist and has not yet been diagnosed with Lyme disease there is a very greater possibility that they will be misdiagnosed and actually continue to get worse. If treatment is delayed to long and they are only being treated for depression then the Lyme disease will still be active and spreading, continuing to do sever damage. Such delays in treatment can cause severe disability and lead to chronic neurological problems, again the reason why getting treatment immediately after infection is so important. It is extremely important for psychiatrist to be just as aware and up to date about Lyme disease and its psychological manifestations.

The Affects of the Controversy

I will only briefly mention the “Lyme controversy”. Even as of present there are medical professionals who disagree on almost all aspects of Lyme disease, medical boards who have had long drawn out meetings and conferences about Lyme disease and insurance companies refusing to pay for treatment. The fact that almost every day there are new research findings about the disease does not make the controversy any easier. The more symptoms added to the pot the more chances for misdiagnoses, especially since many of the symptoms mimic other disease almost exactly (until looked at very closely and from every aspect as discussed earlier –Lyme profile). There are current controversies over whether or not this disease can be passed down from mother to child, if it can be considered a STD, and some people still question its relevance. Many have finally agreed that aggressive treatment as soon as possible, preferably immediately after infection is an individuals best chance at getting better. There are other individuals who believe that modern medicine does not work and is actually more harmful to the body. These individuals suggest a more natural and homeopathic or holistic approach. There are a lot of options regarding these types of treatments and they themselves come with controversies.

The controversies surrounding Lyme disease are wide spread and some of them as I mentioned are concerned with; if the psychological manifestations are truly caused by the Lyme disease itself or if they are diseases or disorders that the individual already had prior to getting infected with Lyme disease and the infection just increased its severity or made it more prominent.

Conclusions and Final Thoughts

As of this moment this is still not a clear answer about the exact connection between Lyme disease and mental health. At this point From what I have read and heard, many people seem to believe that Lyme disease at the very least causes many psychological illness to greatly intensify and become more complex to treat but I have also found there to be a good amount of people (and I mean medical professionals and non-medical professionals) who truly believe that the damage that Lyme disease does to the physical body, for instance swelling of the brain, lesions on the brain, or seizures, that it is actually causing the psychiatric illness as well. This may be as a result of damage done to the “physical” body internally, but it may also be another way that the disease attacks and alters itself to defy attempts to kill it.

The problem with the spreading and the intelligence of this disease is that this is obviously a very smart disease. It can change form and make alterations to itself as needed. It can travel not just in our blood, but through our spinal fluid, attach to our brain matter, enter into other body fluids, go deep into body tissue; basically anywhere it wants to go. Just by hearing that this sounds like a nasty invasive disease that is almost impossible to get rid of, and that’s without mentioning how it makes you feel. I’m not sure how many other diseases out there have as many “smart” qualities as Lyme disease but I would say that this disease is smart and has lots of tricks up its sleeve. Research is also showing that this is actually a becoming global epidemic. Too many cases go undiagnosed, or undiagnosed and misdiagnosed for way to long before finally getting the correct diagnosis and then so much damage is already done. Lyme disease is spreading geographically at a rapid pace. In the United States the most heavily affected area, as most people suspect, is the Northeast. That does not mean that Lyme disease is not present all across the country. There is new research out suggesting that certain birds can actually carry ticks on them, this would help explain the spread in location. It is also being suggested that coyotes and bear can also carry ticks infected with Lyme disease, just as we know deer do. In many areas wild life are making their way back to areas where they used to roam or are being brought into sanctuaries and state parks, this too could be carrying infected ticks all over. The result is that more and more people are getting bit by this tiny little tick, sometimes almost too small to see without a magnifying glass, and do not know it or do not know the possible risk of infection and just think it’s a bug bit no big deal. The other issue as the disease spreads is that the medical community hasn’t kept up, most of the Lyme literate medical professionals are based in the heavily affected areas, mainly the Northeast, and in other areas the medical professional are sometimes, well, clueless about Lyme disease. I may self was in another state that is not very familiar with Lyme disease and during a trip to the emergency room while giving my medical history was asked about Lyme disease because the individual treating me was not familiar with it.

A major priority should be to educate not just the entire medical community (and I mean every field, psychiatric, chiropractic, neurology, general practitioners, everyone) but also the public. Just as we are all told how to try to prevent the flu each year and other certain diseases, for instance especially at its peak there was a huge campaign to educate everyone about AIDS, granted this is a proven sexually transmitted disease and Lyme disease is not although it is questionable, but Lyme disease is an epidemic disease that is quietly and deceptively disabling people one by one without prejudice. Such education would also then help in the actual diagnosis and treatment of the disease. The more people know and are aware of this illness the less (I would hope) they would alienate people infected with it because of their lack of understanding. Something as simple as education could be a key piece in also helping those affected because then they may not have to doubt and defend themselves as much. They may not have to fight so hard to get the medical treatment that they should be able to get. People with Lyme disease are already going through so much physically and mentally, whether you can see or not and whether you want to believe it or not, they should not have to battle to be able to see a doctor who is knowledgeable about their illness, or for their medication, or any other help they may need. You do not ever truly know what another person is going through until you have walked a day in their shoes. At the rate that Lyme disease is spreading most people in this country will unfortunately know what it is like to have Lyme disease at some stage of infection, keeping in mind that every individual has their own unique form of the illness and array of symptoms.

Mental health is not something that should ever be taken lightly. The mind is fragile, people’s emotions are not toys, we are only human not robots, we all have a certain point that once we reach we are not able to handle anymore without feeling added stress, anger, frustration, or others. There are psychological illness that obviously do present in individuals who do not have Lyme disease, and some that have their own “biological” causes behind them, some even genetic. But now we are looking at on foreign element that is able to cause so much physical damage and psychological damage as well. This is actually scary to give a disease so much power. At the same time it is in a way, for myself as a individual with Chronic Lyme disease, it gives me some solace and comfort in knowing that I’m not really crazy, that my emotional issues and any psychological problems I may have been having, as well as any other neurological issues, are at least in part being caused and aggravated by this nasty little bug that has invaded my body and I am yet to destroy. I know from speaking with other individuals with Lyme disease that this is a common feeling.

The research from my point of view seems to be in our favor I would say. I’m not saying that anyone who has Lyme disease may not have had any psychological issues in their life time had they not had Lyme disease. Psychological issues and illness are actually not that rare, and also range in severity. What I am saying is that I believe that the research is pointing more towards showing, sometime in the future, that at least some of the psychological and emotional manifestations that Lyme disease sufferers experience are truly caused by the Lyme disease itself, by the damage that is does to the body and its internal systems. Such research along with any other that will come along will help put us one more step closer to at least finding a better treatment, to help alleviate some of the pain and suffering. Yet the ultimate goal would be to find a cure or better even a vaccine. Either way, Lyme disease defiantly has a connection to an individual’s mental health and is at the very least causing any current illnesses or symptoms to be exaggerated. Until that further research is done we won’t know the full extent of this connection. Until then I personally will take this and use it as a little boost of strength to help me in my own personal battle with Lyme disease and continue on my search for more education and the latest research finding, and while I do I will continue to hope, and help where I can, that all of these big medical boards, and committees and even our government will do something more to start to educate and help people before this Lyme epidemic gets too much worse.

References
Barbour, Alan G. M.D. (1996). Lyme Disease; The Cause, the Cure, the Controversy. Baltimore: John Hopkins University Press

Burrascano, Joseph J. JR M.D. (2008). Advanced Topics in Lyme Disease; Diagnosis Hints and Treatment Guidelines for Lyme and Other Tick Borne Illnesses, 16th Edition.

Lang, D & DeSilva, D M.D. (1993), Coping with Lyme Disease; A Practical Guide To Dealing With Diagnosis And Treatment. New York: H Holt & Co.

Vanderhoof-Forschner, K. (1997). Everything You Need To Know About Lyme Disease and Other Tick-Borne Disorders. New York: John Willer

Andrews, V. (2004). The Psychological Effects Of Lyme Disease; Can a tick bite drive you crazy? Doctors warn that Lyme disease may cause personality changes. Retrieved November, 1, 2009 From IgeneX, Inc web site: http://www.igenex.com/psychological_effects.htm

Bransfield, R M.D. (n.d). The Neuropsychiatric Assessment of Lyme Disease. Retrieved 11/8/2009 from web search: http://www.mentalhealthandillness.com/tnaold.html

Fallon, B M.D., M.P.H. & Nields, J M.D. (1994) Lyme Disease: A Neuropsychiatric Illness. Retrieved on November 20, 2009 from the American Journal of Psychiatry through: http://www.angelfire.com/biz/romarkaraoke/lymeart.html

Link to where THIS ARTICLE with the original tables  was published on web:

http://www.cynthiamchase.com/publications-cynthia-chase-likes/666/lyme-disease-and-mental-health-is-there-a-connection-by-jillian-cote-and-cynthia-m-chase-msw-lcsw

Her main page- lots of info!! :

http://www.cynthiamchase.com/

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