This post is a lengthy introduction to a study published in 1986 that speaks directly to the issue of the persistence of Lyme infection. This is one of many studies addressing this question (Lymedisease.org has a useful pdf list of similar evidence) in the past three or more decades. Yet many high profile doctors and medical institutions and agencies repeatedly state that there is “no evidence” of persistent Lyme.
If you are familiar with this topic already, here’s the article. It is one of many that will blow you away no matter how long you’ve thought about this topic. Because, as you know, the voices, faces and words of the many doctors claiming these studies don’t exist have been extremely adamant and damaging. They have also often been extremely arrogant, hurtful, and memorable.
For those that could use some introduction, context, and background (or just want to know what I think about this) keep reading or come back after taking a look at the journal article.
Context and Controversy
This is one of the many areas that perhaps makes Lyme patients sound a bit like conspiracy theorists. I’m sorry to say I had a bit of that impression prior to my diagnosis, after my first viewing of Under Our Skin. But I started looking into guidelines and background that very evening and it was not hard to confirm.
This area of Lyme politics makes us sound this way because the evidence being denied if quit vast, which justifies a tremendous amount of anger. And the attitudes of those denying this evidence are very offensive to patients who’s lives have been destroyed by denying this very available body of evidence. View Under Our Skin for some prime, skin-crawling examples of the arrogance with which these statements are made.
Using terms like ‘destroyed’ also erodes are credibility at times with the non-suffering public. But as with all areas of this disease and it’s surrounding issue, this is only the case for folks who haven’t experienced this or had meaningful exposure to the issue. Once either of those factors change, it is easy to that statements and words of that nature are understatements.
Background and Troubling Statements
There are many troubling statements from Lyme skeptics in the medical community that you will get used to hearing if contract Lyme disease or spend any amount of time looking into this issue.
Many of these statements pose direct dangers to patients, primarily because they misguide treatment and care, but also because they sound plausible enough to be easily accepted.
Many are easily refuted, but a reader or listener has to have the proper motivation to look harder to do so. And most people trust the entities making these statements.
Trust and Consequence
I accepted my incorrect diagnosis because I believed some of these statements and trusted the entities and individuals they were coming from. The costs of delayed care are too great to allow this to happen to any more people, let alone hundreds of thousands per year.
Therein lies the tremendous danger in letting these statements go unchallenged. But there are so many statements to challenge, with so many people to reach, that this obviously is a daunting task.
In almost every major mainstream media article there is an opportunity for Lyme skeptics to rebut, if theirs is not the prevailing perspective (which is usually, but not always, the case). When they give their perspectives (stated as fact), they often repeat many of these troubling statements, and often change the conversation just enough to give the most convincing and convenient answers (whether they really address the issue or not).
This Study and Persistent Lyme
There is too much complexity in the topic of persistence of Lyme spirochetes and the disputes over the existence of Chronic Lyme to do the topic justice here.
However, it is not the science that is complicated. This field of science is complicated, certainly. But the evidence is not vague or even being disputed on it’s merits. It is simply ignored or denied. Again, not it’s merits, but it’s existence.
It the politics and the manner in which the science has been disregarded, or in many cases acknowledged and then dis-acknowledged by entities such as the CDC over time.
Lymedisease.org is one of my favorite sites in this area. There you will find a nearly endless supply of well-written articles and resource pages addressing the many aspects of this phenomenon in regards to Lyme science, including the specific issue of Lyme persistence/Chronic Lyme.
Study after study demonstrates the persistence of Lyme through multiple methods of isolating live infection. It very easily evades detection, but this only makes the findings that much more meaningful. Despite the tremendous difficulty of detecting it, researchers have been able to do so repeatedly. Indicating that the prevalence of persistent infection is missed most of the time.
The Standards for Use of Science
I intend to learn more and to post more on the specific mandates state and federal NIH, CDC, and similar agencies are bound by. I am baffled in this area by the contrast between what science must be addressed, especially by the CDC, compared to other science based agencies.
There are many agencies bound (legally) to address the best available science in every analysis within a rigid, transparent, regulated decision making framework, usually subject to public notice and comment.
I know that there are checks and balances that should apply here. But I am baffled by the lack of implementation, the lack of presentation of fact, and the lack of credibility in the statements from the CDC that are causing very direct harm to patients, families, and (I am highly convinced based on my own experiences and basic reasoning skills) the enormous present and future costs to the economies of every nation where this disease occurs (which includes all continents other than Antarctica).
This is certainly not my area of expertise. If you are interested in specifics on this matter, you should look to Lymedisease.org and the the sites, studies, and resources they point to.
But, oversimplified as this may be, it is striking to me that the even the basic chain of logic presented on this matter (virtually always in the absence of facts, data, or references to support the claims) is so clearly problematic. You will read that Lyme must be treated quickly and can otherwise lead to permanent neurological and physiological damage and/or death. Yet you next read that there is not such thing as chronic Lyme. So….if we are not diagnosed, does it go away?
This can’t be what they are implying? But if not, what are they asking us to believe?
Here comes one of the most prevalent bait and switch tactics I notice most. There is often reference of a post-treatment Lyme syndrome to address long term symptoms after treatment. End of topic. But what about the hundreds of thousands of us that are not diagnosed or treated? My Lyme disease, when finally diagnosed more than three years after infection, was not post-treatment anything.
It is easy to deal with questions like these by simply changing the conversation and never looking back. You weren’t diagnosed, so you are likely not reported and not on the charts of reported cases. You won’t respond to one month of antibiotics after years of infection. If you do, you incredibly unique. I admit that the preceding statement stems from my personal observations of anecdotal and peer reviewed evidence. But at least it is based on something, and I would expect to see the contrary statements from doctors, IDSA, or CDC provide their evidence.
I will try to provide some of the articles here that demonstrate this. There are many that exist. Because numerous doctors and the CDC themselves have gone on record addressing issues such as the persistence of Lyme or the intended purposes of reporting guidelines (which are not erroneously used as diagnostic criteria through IDSA’s guidelines, as adopted and distributed by the CDC) in manner consistent with the evidence. But have later gone on record stating the exact opposite.
This should trouble people deeply and should cause law makers and representatives to take note and take action.