This overview was initially part of another post from September (with patient accounts of long-term Lyme), but there were just too many ideas there to be valuable. However, referencing that post is extremely valuable in digesting this overview, and in understanding why you should take the time to do so. Dozens of patients were willing to comment on their often debilitating, usually lengthy, roads to proper diagnoses, and too often on-going roads to adequate care. There are compilations of stories all over the web, and they are worth finding from time to time to remember why we need to work together on changing the situation.
There are endless reasons to get in touch with this debate. We can easily misjudge or forget who we are really arguing with otherwise, and misjudge or forget what points we really need to focus on. Although it is more than a lot of us can digest, we need to if we want change. The debate changes constantly, which can be harder to see the less we understand.
Having written this months ago, there are multiple points I may need to update, either because they’ve changed, my health or mind have improved allowing me to grasp something better, or I’ve learned more about a given area.
This week in particular, there are new reasons to learn. Not the least of which being that IDSA has announced a comment period related to reviewing their guidelines. I have multiple article links to add in when I have time, but mostly please watch for additional links or posts on the comment period and help from groups with resources and experience to share.
The argument against the existence of Chronic Lyme Disease almost always hinges on the statement that there is “no evidence” that Lyme persists beyond antibiotic treatment.
This is a pretty ridiculous and irresponsible statement to make, since there is over three decades worth of evidence resulting in hundreds of peer reviewed, published studies demonstrating that Lyme does persist beyond initial treatment.
And what of the patients who go undiagnosed and untreated for years? Does their Lyme Disease simply go away on it’s own?
With the arguments against chronic or persistent Lyme disease being so weak, controversial, unfounded, and easily refuted, one might validly wonder who on earth would be continuing to make this argument.
The Arguers ~ Refuting Chronic Lyme
I’ve written about CDC and IDSA here and elsewhere, as have many others. So I’ll simply identify the major players and give you some leads for further reading. But in a nutshell:
- CDC (Although recent updates are seeming to back away from negating the persistence of Lyme Disease.)
- NIH (There is a better representation, though not a full representation, of available science on their related pages, or at least an acknowledgement of differing results in laboratory tests and differing conclusions in the literature.)
- Major Medical Institutions (Mayo Clinic, state Health Departments, additional entities that quote or deseminate CDC information).
- IDSA (Most of the erroneous claims originate from IDSA, unless you look to older statements and materials from IDSA doctors prior to their current positions and levels of involvement with IDSA. In may cases, their officials make current claims that a complete turn-around from their earlier stated positions (or even their own research). *June 2015 update: among many valuable articles including those below, this recently published article does an excellent job of depicting current issues
Related reading for an overview and/or more depth on these entities and their roles, and/or examples of this argument being made include:
- LYMEPOLICYWONK: New York Times blew this Lyme story big time
- LYMEPOLICYWONK: The IDSA Guidelines And Embers At a Glance Table
- CNN Lyme Coverage ~ CDC says 3 weeks treatment is enough
- TOUCHED BY LYME: CDC fires another salvo against “chronic Lyme”
- MEDICAL PANEL KEEPS LYME GUIDELINES “AS IS”
- Commentary by Holly Ahern, May 2015
The Arguers ~ Supporting Chronic Lyme and Adequate Care
These are just a few examples of supporters and the ‘categories’ they could roughly be placed within:
- Lyme Disease patients
- Knowledgeable doctors that actively treat long term Lyme patients
- Patient Advocacy Groups
- Researches actively studying persistence
- Universities and independent researchers actively researching the mechanisms of the disease
- LYMEPOLICYWONK: Two Standards of Care Revisited: Should Lyme Patients Have A Choice?
- Pfeiffer Article in Poughkeepsie Journal: Review of Lyme disease treatment leaves out patients
- Studies Listed (273) Proving Persistent Lyme
- Evidence assessments and guideline recommendations in Lyme disease: the clinical management of known tick bites, erythema migrans
rashes and persistent disease
The following was posted on facebook by Dr. Daniel Cameron on January 20 and is quite fascinating (in the case, appalling is really a more appropriate term). This is relevant here because the argument against Chronic Lyme Disease relies on short course antibiotics being effective treatment (which is not always the case, even with early detection, but seldom the case with long-term infection):
Persistent Lyme ‘Categories’
So, we have multiple separate categories of persistent Lyme patients, primarily encompassed in the following categories:
- Those diagnosed and treated quickly but not effectively or sufficiently treated
- Those not diagnosed and not treated
- Those misdiagnosed and not treated
- Those receiving delayed diagnoses and delayed treatment
Delayed treatment is one of the largest obstacles to recovery, but MOST patients fall into this category.
Although misdiagnosed and undiagnosed patients make up the largest category of Lyme disease patients, you will seldom hear this category directly addressed by CDC or IDSA. When they negate the persistence of Lyme (which is counter to copious peer reviewed evidence), they are typically speaking (entirely or primarily) of those patients who were quickly diagnosed and treated, although they are incorrect in that instance as well. They (CDC, IDSA, and many mainstream medical institutions) carefully state that most patients recover with brief treatment, but fail to address patients for whom treatment is delayed.
In reality, inadequate initial treatment also leaves thousands of patients suffering, because brief treatment is often not enough, especially when coinfections are present, as is commonly the case.
Does the failure to directly address delayed treatment, paired with the denial of long term Lyme disease, somehow indicate that although quick treatment is paramount to recovery, Lyme will simply ‘go away’ if not diagnosed?
When the CDC admitted last year that Lyme occurrence is likely at least ten times greater than reported (300,000 new cases per year rather than 30,000), most Lyme disease patients were not surprised. This is because most Lyme disease patients go through an unimaginable amount of red tape to receive proper testing and adequate consideration of the symptoms they’ve experienced. Doctors forget that Lyme is a clinical diagnosis, and patients and doctors alike get hung up in lab work that is less than 50% likely to show an active infection, if present. We all need to remember that lyme is a clinical diagnosis. This fact could have saved many of us from years of misdiagnosis.
But in the mean time, a huge missing piece of debates over the existence of Chronic Lyme (CDC and IDSA doctors repeatedly claim there is not evidence), as noted earlier, is where misdiagnosed patients would fall in the CDC’s existing categories.
We weren’t treated, so we certainly don’t have post treatment Lyme syndrome before we’ve ever been treated. And a month of antibiotics would certainly not be expected to fight an organism with as complex a life cycle and physiology as that of Lyme disease.