Chronic Lyme is a dubious diagnosis

“Chronic Lyme disease: A dubious diagnosis” is an accurate statement. Webster-Merriam dictionary ( http://www.merriam-webster.com/dictionary/dubious) defines dubious as:   giving rise to uncertainty, of doubtful promise or outcome <a dubious plan>,                questionable or suspect as true nature or quality <the practice is of dubious legality>,  unsettled in opinion, doubtful  <I was dubious about the plan>. 

Accurate, misleading, and incomplete…the article (available at  http://www.chicagotribune.com/health/ct-met-chronic-lyme-disease-20101207,0,5671843.story?page=4)  in the December 8, 2010 Chicago Tribune  with the above title, struck me as malicious—as  though the authors were angry with Chronic Lyme disease diagnosed patients, and the medical practitioners who are trying to treat them.

The Chronic Lyme diagnosed patients and their physicians are painfully aware of the uncertain, questionable, suspect, and unsettled opinions concerning the diagnosis and treatments of Lyme’s Disease and associated variations of the disease such as: Acute, Chronic, Late Stage, Post Lyme, etc.

I have personally done quite a bit of research into Lyme’s Disease (LD) in search of a medical solution to whatever was disintegrating my mental and physical health. I started searching on my own because I was getting little or no help from the mainstream medical system after many frustrating years of continual degradation of my health. After three years of research and two years of treatment I have learned much, and my health has definitely improved…but the uncertainty, questions, suspicions, and doubt have only increased with little hope of resolution in sight. I have submitted to long term antibiotic treatments after the IDSA suggested treatments failed. I hope this does not contribute to the overall ineffectiveness of antibiotics, but long term antibiotic treatments are not a new concept or exclusive to the treatment of Lyme, and if they are deemed appropriate for infections that cause ailments like acne, they should be deemed acceptable for the treatment of infections like Lyme. That is just common sense. Has my experience caused me to offend or burden someone other than my family? Can you be absolutely certain?

I credit most of my improvements to my “non-mainstream Lyme aware” doctor. This doctor holds MD’s in both conventional and holistic medicine, office visits are a full hour, and the first visit was three hours. Let me be clear…that is the amount of time the doctor spends with me, not the time I spend at the clinic. When was the last time your doctor spent an hour with you (while you were conscious)? Furthermore, this visit is an examination with conversations where I actually get to explain without interruption what I am experiencing; apparently my doctor does not believe in the eighteen second rule…a rumored average time it takes a physician to cut off a patient trying to explain symptoms. This doctor has never promised a cure, in fact, she has been very open about the cost, uncertainty, and controversy of the alternative treatments offered, and I know all suggested treatments are ultimately my choice.

Not surprisingly, with such a thorough examination we discovered I had multiple health issues, some that needed treatment, others required lifestyle changes. I realize my experiences with this physician justify my tendency to place this compassionate human being on a pedestal, but I do not understand how anyone, who does not know this person, can discriminately label her as not caring because she is associated with a specialized group of physicians providing care in a “golden age of dubious medicine”. By the way, I do agree with that claim—this is a golden age of dubious medicine without a doubt!

 Has my doctor done something to offend or burden anyone because of the methods she uses to diagnose or treat me? Are you certain, without doubt, and do you know for a fact that what my doctor is doing is wrong? If you answer yes, even the IDSA would consider your opinion dubious.

I was going to critique the whole article but I had a hard time getting past the title. Like I said I felt it was accurate, but very incomplete, and therefore extremely misleading. If anyone is interested in my thoughts, I might blog a critique on the subtitle “There's little good evidence that chronic Lyme disease exists. Yet doctors are treating it with drugs that put patients and the public at risk.” It also is accurate, incomplete, and misleading. And after that we could look at “Lyme disease is real. The bacterial infection, chiefly transmitted by deer ticks, can cause rashes, swollen joints and inflamed nerves, and usually is curable with a round of antibiotics.”  This statement is also accurate, incomplete, and misleading.

My purpose is to criticize or antagonize in order to stimulate conversations that will raise awareness. This Chicago Tribune article was negative in tone but may actually have a positive effect in the end because it does criticize and antagonize conversation which can only raise awareness.  Most people will see through the biased opinions and the phony media agenda of creating controversy for profit. After all if there is no such thing as bad publicity...it should work both ways.

A gathering place

Is it Lyme’s Disease? That seems to be the root of the controversy that pits doctor against doctor, scientist against scientist, patient against insurance company, and politician against policy. Meanwhile, reported cases of Lyme's Disease (LD) indicate the disease is spreading at an alarming rate, and all the experts agree the majority of cases are not being reported because of misdiagnosis by doctors, or patients being unaware they are infected, and uninsured or underinsured patients are unable to seek medical care. Fortunately, all the experts also agree that treating LD early is the most reliable, successful, and economical way of curing the patient. Unfortunately, we also have an epidemic of LD ignorance which prevents early diagnosis and treatment that needs to be corrected first. How could this be done? By educating everyone quickly; by bringing doctors, scientists, and patients with LD knowledge together with the purpose of sharing that knowledge to identify gaps and deficiencies, in addition to raising awareness for the public…a gathering place.

The controversy about LD mostly centers on its long term, late stage, or post treatment attributes and symptoms, and what if any treatments should be done to reduce or eliminate them. There are expert doctors and scientist with many conflicting studies and opinions on the subject which have very serious consequences for the patient and the public as they sway policy for treatment, insurance coverage, and education. The more I learn about LD, the more confusing the science gets, but the more I recognize there are huge gaps in communication between doctor and doctor, scientist and scientist, doctor and scientist, patient and doctor. I imagine the reasons for this lack of communication are many: convenience, logistics, time, ignorance, arrogance, pride, etc…but the result is prolonged suffering for the LD infected, increased risk for the uninfected, and a financial burden for everyone in the form of increased health care expenses. I am not a doctor or a scientist so there is little I can do to speed the science, or ease the suffering, but I can share what I have learned about the obstacles for preventing, diagnosing, and treating Lyme’s Disease, and try to stimulate discussions to help others understand the seriousness and urgency of correlating the knowledge we have, regardless of who or where it originates, with those who possess the expertise to find a cure, a vaccine, effective treatment, or do anything that will help reduce the suffering or spread of Lyme’s Disease. It is essential to get everyone going in the same direction. Christopher Columbus sailed west to discover America—if those who followed Columbus had gone east, north, or south we would not be where we are today. This is the problem with LD research today…discoveries have been made, but everyone seems to be going in a different direction ignoring the discoveries of others. How do we fix that? We get everyone together and give everyone who has something to offer a chance to share their knowledge, studies, experiences, or ideas with the purpose of gathering all the pieces of the LD puzzle currently available in one place. We have the ability in the internet to get the whole world involved, databases big enough to handle endless amounts of data, universities full of academic scholars, laboratories full of scientists, medical facilities full of physicians. All we need is a gathering place in which to get everyone going in the same direction.

Is it Lyme’s Disease? The diagnosis and treatment you get will depend on who you ask, what tests are used, how the tests are interpreted, and when the tests are done. However, regardless of whether or not it is LD is not the problem. Lyme’s Disease is only a label or name for a bacterial infection that may or may not be the cause of a whole array of acute and/or chronic symptoms affecting more and more people every day. The problem is there are tens or even hundreds of thousands of people suffering from similar symptoms often associated with LD for which there is no foolproof test, while pockets of professionals are chasing ideas and theories in all different directions. Some hoping for fame and fortune, others for science or personal reasons, but for the most part they are not organized in a way that will relieve the suffering for those affected.

Meanwhile, policies and standards based on controversial or incomplete data are being drafted and used by physicians to determine treatment protocols not universally accepted, and by insurance companies to deny medical expense claims, neither of which is always in the patients’ best interest. At the rate LD is spreading, everyone is at risk of being infected, and everyone should understand the urgency of preventing, correctly diagnosing, and treating LD before it becomes a national or global crisis. We need to spread awareness at a pace that exceeds the pace of the spread of LD. This means an open minded approach that acknowledges there is a lot that is not known and that we cannot afford to exclude any data or experience until it is proven false. It is essential to collect, organize, and make all relative data available to any individual or organization willing to help identify, prevent, and cure the source of  Lyme’s Disease, Acute Lyme’s Disease, Late Stage Lyme’s Disease, Chronic Lyme’s Disease, Post Lyme’s Syndrome, or whatever name is appropriate for this epidemic.