Better Diagnosis and Treatment of Lyme Disease, Part 1: Introduction to Dangerous Misinformation
It takes considerable research, specific training, or direct experience (or some combination thereof) with this disease to get a good feel for the nature and number of conflicting recommendations, standards, and medical perspectives are out there (and why they are so important).
Categorizing the controversies and gaining at least a general awareness for them can make problematic and misleading statements at least a little easier to spot. It is considerably easier to double check facts if you know what types of facts to doubt.
Research Overwhelmingly Agrees With Patient Experience
Point by point, there is considerable evidence to support what patients, Lyme Literate Doctors, and Lyme Disease Researchers are advocating for to achieve better standards for diagnosis and care. Some the most important (and dangerous) myths are very easy to refute, but the sheer number of them, the prevalence of the misconceptions, the lack of awareness throughout much of the medical community, and the continued reliance on faulty guidelines, can make the task of even identifying them all the more overwhelming.
Trust and Lyme Disease
Additionally, someone who suspects Lyme Disease, but has been discounted by their doctor (and trusts them, like most of us do) can lose valuable time and can be easily misled by misleading information.
I was misdiagnosed for 3 years because of this. I had my nagging suspicions, but was erroneously told Lyme Disease was not a possibility, based solely on geography. I read a fair amount of information on credible agency and institution websites that adamantly discounted my suspicions, based on what I now know to be poor logic not supported by current research.
The problem is that it sounds logical and compelling to a reasonable person not familiar with the topic.
Better information is (and was then) available, but I didn't know to look for it, probably for many of the same reasons as the rest of the estimated 270,000 new patients that also went undetected and untreated that year, and each year.
A necessary first step is identifying the problems, the dangers, and the areas of major disagreement, so that patients know what to watch for.
As a federal Biologist myself, I expected and trusted agencies to have done this when compiling information for doctor and patient education, and especially when evaluating the guidelines and protocols that guide (or in my case misguided) my care.
Why This Aspect Of Lyme Disease Is So Important
No single article, hub, or paper can touch on all of the areas of debate surrounding Lyme, or even list all of the debated medical information. There is just too much disagreement to cover it all in any one place—in most cases, even in a single book.
The debate has raged for years, with information stated by doctors, even on Hub Pages, without regard for, or mention of, credible evidence contrary to their position. (As a happier side note, most of the Lyme Disease articles on Hub Pages are clearly guided by direct experience and contain a more complete and reliable picture of this disease and complexities.)
"No One is Immune"
This may seem, for those not currently affected (or infected) like a good reason to avoid the topic. But because the disease and it’s vectors are spreading their ranges, because diagnosis is so obstructed by current guidelines, and because it is impacting so many people across the globe, this is an issue of huge importance.
Knowing about the dispute and being equipped with better information could save your life, or at least your quality of life, could save someone you love, and could help us fight for change before you and your family are affected.
Additionally, current and future Lyme Disease patients need public awareness and support in order to change the current diagnosis and treatment inadequacies.
Disagreement and Misleading Lyme Disease Information
I’ve posted a few Hubs already that cover, at least broadly, the major areas of disagreement, and to some extent have covered why they are important (and what patients are doing about it).
Prior to this series, my articles here included, "Why Are Lyme Disease Patients Waiting Years For Treatment," "Consequences of Long-Term Lyme Disease Infection," and "Lyme Disease Activism ~ Why Patients Are Protesting." I've also posted articles, resources, and stories that hopefully help illustrate this background on my Lyme Disease Blog, Invisibly Lyme Montana.
There is a large amount of good information available from advocacy groups, patients, and Lyme Literate Doctors. But it only helps if people see it or know to look for it. So, in light of recent Hubs with misleading information, and in some cases out-right wrong information, and in light of the prevalence of wrong information so far on many agency and medical websites, I think we need to continue to provide the real story to offset the damage.
Better science is available. For some points, it’s been around for many years (the persistence of Lyme, congenital lyme, tick vectors, inadequacy of 4 weeks of treatment) and in some cases older anecdotal evidence is supported by recent studies (sexual transmission of Lyme Disease, soft bodied tick vectors, etc.).
As a result, some points have been or are slowly being corrected on some agency websites, and discussed in further detail on others (such as NIH). But it's not happening fast enough for a great deal of main-stream information to yet be safely relied upon.
A few of the myths I hope to cover in this series include those related to the following:
- Methods of transmission
- Tick vectors
- Longevity of Lyme infection
- Chronic Lyme versus Post Treatment Lyme Disorder
- Types and lengths of effective treatment
- Timing and types of symptoms
- Prevalence (likelihood) of ‘indicative’
- Treatment of Bell’s Palsy
- Neurological symptoms other than Bell’s Palsy
There are also critical gaps in knowledge and awareness in areas that can't even be called myths, for how little is said or known of them. A critical example is the importance of common and uncommon additional infections that many patients contract at the same time as Lyme Disease. There are referred to as co-infections, and you may see phrases such as "Lyme & Co" because they are just as important as Lyme Disease to treat, and in some cases more so (more on this in following Hubs, but in the mean time, a book by Dr. Horowitz is highlighted and linked to in this Hub and others, pictured to the right, that is an important resource).
Starter List of Troubling Points
Examples of (paraphrased) recent troubling statements (from a small number of hubs) include direct or indirect statements that:
- Lyme disease is over-diagnosed (statement since removed, but was very troubling);
- Bell’s palsy is treatable with 4 weeks of doxycycline;
- Laboratory confirmation is necessary to be considered as having Lyme disease;
- Surveillance criteria are adequate as diagnostic criteria;
- Seronegative, later stage Lyme is a ‘mild, attenuated illness’ (I can hardly type this part, as I and thousands of other patients are not at home without a paycheck for the fun of it, and thousands of us either are seronegative or don’t have high enough concentrations of dna bands to count under arbitrary (surveillance) guidelines that are directly, completely, unambiguously negated by science);
- Only a few patients who are inadequately treated in early infection develop persistent symptoms;
- In cases of persistent symptoms following inadequate early treatment, these are limited to mild joint and neurological symptoms;
- Timing of antibodies is linked to timing of rash;
- A rash is a reliable indicator of the presence or absence of Lyme, with rashes occurring at expected intervals post-exposure;
- This one I’m quoting verbatim, written by a doctor, because it so grossly erroneous and lacking in any citations---this even disagrees with CDC and mainstream medicine that have historically understated the problem, but even they have never claimed 100% of cases are caught by tests (this would be absurd, even if tests were much better than they are): “Approximately 20-30% people test positive in acute phase samples (within the first one month of infection), whereas, the remaining 70-80% have a positive response during convalescence (2-4 weeks later).” (This will be covered intensively in following hubs, and could have its own annotated bibliography of contrary research);
- False negatives can be accounted for as occurring only through testing too early or the patient being on antibiotics. (It is extremely dangerous to suggest this, there are many more reasons for false negatives, including lack of sensitivity in the tests, leading to positive patients showing up as negative more than 65% of the time (potentially as high as 85% of the time));
- All manifestations of Lyme can be treated within 4 weeks through single antibiotic treatment;
- That enough is known about Borrelia strains that the vaccine being tested now will cover all species in the northern hemisphere. WHAT???? If that is the case, then it completely negates absolutely all of that author’s earlier statements about testing, since current tests look for only one strain.
What Independent Researchers Say (In Agreement With Decades of Research)
Hubs to Come ~ This Series
The next article, prior to delving into refuting the troubling statements in this article, will explore issues and strategies related to evaluating credibility, which can be extremely complicated regarding Lyme Disease. It is an issue near and dear to my heart, because it was a factor that delayed my diagnosis and treatment, which has greatly altered the course of my life.
There could be any number of topics needfully covered in this series, but in general, I expect the next few hubs to cover roughly the following (with the expectation that topics and order will adaptively evolve):
Part 3— Science Refutes Common Myths
Part 4—Inadequacies of Testing and Interpretation (Intro to "Dearborn" and IDSA)
Part 5—Diversity of Symptoms and Patient Presentation
Additional topics to be determined and updated, based on the natural evolution of these Hubs and on continued feedback (here and elsewhere) from patients and readers.
A Few Areas of Disturbing Recent Statements in Hubs
What's Wrong With It?
Is There Peer Reviewed Contrary Evidence?
20-30% of positive Lyme cases are detected by labratory tests during early infection and the remaining 70-80% of cases are detected at 2-4 weeks
Two tiered testing misses most cases of Lyme disease. The Elisa misses between 65 and 85% of positive cases and is used to determine whether further testing will occur. Approximately 270,000 new cases of Lyme per year are not detected in the U.S. alone, while approximately 30,000 are reported (but some of these are also initially missed).
Abundant evidence from laboratories, government agencies, medical institutions, universities, and copious published studies.
False negative laboratory tests are explained by timing (testing too early), the patient being on antibiotics, or the patient having syphillis
False. Upwards of 90% of cases are missed and many patients who do not remotely fit into any of those categories test negative repeatedly before testing positive in laboratory testing.
As above, also covered extensively on the NIH website.
Lyme disease is overdiagnosed.
Not supported anywhere in research or even by mainstream medical institutions. 270,000 cases/year are missed compared to 30,000 cases/year detected.
As above as well as abundant, easily searchable contrary evidence. CDC's estimates are that Lyme is missed at a rate of 9:1.
What to Remember about Lyme and Why It's Critical to Know!
There is no single place to go to evaluate the facts you read when you are new to Lyme, and there is no way for patients to know that they need to.
CDC and Mayo Clinic, for example, would tend to be believed on points that would send Lyme positive patients away from seeking treatment, leaving them misinterpreting many of their symptoms and setting them up for years or a lifetime of pain and suffering.
I was one of these people. I mostly believed my doctor, despite a lingering doubt. As a patient, I accepted certain information as credible because of its source (and lack of reasons why it would be inaccurate), whereas reviewing the literature, as a biologist, instead of information provided for patients would have led me in the right direction much earlier.
If you are looking for more insight on this issue, there are multiple credible articles here on Hub Pages, and most of the articles I’ve read in our Lyme disease section have been entirely, mostly, or at least safely correct (it’s important to note that much of this knowledge is still evolving). I’ve read numerous hubs by patients, who point to a number of the same dangerous myths, which is not a coincidence.
Two authors that stand out to me at the moment are those by donotfear (pertaining to the broader issues, her story, and Lyme in Arkansas) and by arunyan (pertaining to why tests are inaccurate and how to get your doctor to test).
Help From Readers and Lymies....
Thoughts, questions, and citations about any of these topics are greatly appreciated as I move forward into these hubs, as this is a lot to cover, and why I’ve tried to steer in a slightly different direction with my other Lyme disease hubs so far.
But this is important! It is essential that while we are waiting for further corrections on agency and medical sites, that we reduce the risk of patients reading wrong information that causes their illness to be prolonged.