23 What's In A Name: Is Chronic Lyme Real?

"Anyone who has a lot of information, thinks a lot, and by thinking increases his understanding of a situation, will have not less, but more trouble coming to a clear decision. To the ignorant, the world looks simple. ...Once we gather a little information, however, we run into trouble. We ... become more acutely aware [of] what we don’t know. This probably explains why we find so few scientists and scholars among politicians. It probably also explains why organizations tend to separate their information -gathering and decision -making branches. ... to provide decision-makers with only the bare outlines of all the available information so that they will not be hobbled by excessive detail when they are obliged to render decisions."

Dietrich Dorner, The Logic of Failure, 1988

A few weeks ago I was reviewing my stat logs for web traffic and looked at the list of common web searches that people used and ended up finding this blog.

One string of keywords popped out to me and it was simply this: "is chronic lyme real".

Of course, I don't know who they were or where they came from, or what their story is. I wonder if they are another human being suffering with symptoms making their life miserable and asking, "Is this it? Could this be my problem?" or if they were perfectly healthy and stumbled upon some article about chronic Lyme Disease that cast doubt on its existence.

I'll probably never know who it was or their reason for being here. But the question is a good one, and surprisingly not a simple one.

Over the course of time I intend to examine the issue of persistence in Lyme Disease - which is directly tied to this question. But to draw on the quote at top, it's not an easy question to answer in some ways.

I know there are likely to be people reading this at this very moment about ready to throw something at the screen because I wrote that. I can hear you all the way over here, through that mass of Cat-5 cables and 3G networks, saying, "What? What do you mean, 'it's not an easy question to answer'? Of course it is - I'm sick with chronic Lyme disease, you ass, so of course it's real!"

And on the flip side, I can also hear the rare, passing IDSA-guidelines-believer almost audibly shrugging and saying, "Heh. That's easy. Of course chronic Lyme is not real... What was that link I was really looking for? Ah, yes... there is that abstract on Ebola vaccine development..." and moving on.

Now that the initial reaction has passed, though, I'll explain where I was going with my statement if you're still sticking around.

You are? Okay. Then read on, and be prepared for some TLAs (Three Letter Acronyms).

Problems with Naming Conventions 

On the one hand, Chronic Lyme Disease (CLD)* is defined by the Lyme patient community as having chronic and persisting Borrelia bacterial infection. That is a simple baseline definition of CLD.

On the other hand, the Infectious Disease Society of America (IDSA) has been the primary institution in the US (and to some extent, the world) which has set the standard for infectious disease definitions and treatment guidelines for some time.

For the subgroup of the IDSA which set the definition of Lyme Disease and guidelines for its treatment, their current opinion is that Chronic Lyme Disease does not exist, yet they have used the term one way in the past and have defined it differently now.

They believe that people with self-reported symptoms matching those of Lyme Disease are mostly sick with something else other than Lyme Disease, and that a small subset of patients who have had Lyme Disease and are experiencing Lyme-like symptoms after three weeks of antibiotic treatment have a condition known as Post Lyme Disease Syndrome (PLDS).

To use myself as an example, I am what the IDSA (and the cited NEJM article) would consider a "Category 4 Chronic Lyme Disease patient".

According to the IDSA, this means:

"Category 4: Symptoms of unknown cause after antibiotic therapy and resolution of an objective manifestation of Lyme disease. 

Only patients with category 4 disease have post-Lyme disease symptoms. Data from three double-blind, randomized, placebo-controlled trials have shown that there is substantial risk, with little or no benefit, associated with additional antibiotic treatment.  

Most patients presumed to have chronic Lyme are in category 1 or 2; antibiotic therapy in these patients is not warranted."

The IDSA has also given the following definitions to describe those who have Post-Lyme Disease Symptoms/Syndrome and those who have CLD:

"post-Lyme disease symptoms: fatigue, musculoskeletal pain, difficulties with concentration or short-term memory, or all of these symptoms when experienced by patients despite resolution of the objective manifestations of infection by Borrelia burgdorferi after antibiotic treatment. Seen in a minority of patients.

 post-Lyme disease syndrome: symptoms above lasting longer than six months. 

 chronic Lyme disease: The term has been applied to patients in a variety of contexts, including those with objective late manifestations (such as arthritis) and those with purely subjective complaints after antibiotic therapy. It is also applied to those with unexplained subjective symptoms without credible laboratory evidence for Borrelia burgdorferi infection irrespective of exposure to an endemic area. The term has also been applied to patients with other identifiable conditions such as multiple sclerosis."

So to make matters all the more confusing to the random passerby, the term "Chronic Lyme Disease" as currently used by the IDSA does not match the term "Chronic Lyme Disease" as it is used by the Lyme patient community.

The Lyme patient community, as you'll recall, states that CLD is caused by a persistent Borrelia infection. 

To further add to the confusion, the IDSA guidelines group used to define and use the term CLD the same way that Lyme patients currently do, and they still might in certain documents.

But now IDSA's current definition of CLD above is so broad as to be almost completely meaningless. It can be about objective late stage Lyme symptoms - but it is also stating that CLD is not related to Borrelia infection at all - especially if the patient lacks "credible laboratory evidence" for it (which is another issue - if that means serological testing, it is not always an accurate indicator for the presence of Lyme Disease - the most recent European study I posted bears this out) or perhaps it  isn't even Lyme Disease at all and it is MS.

This is unusually inconsistent with how one would determine definitions in many scientific realms. Consistency and specificity in language are important - especially in science. Words mean something.

Defining "Chronic Lyme Disease" in this manner, the IDSA might as well call it a dessert topping, floor wax, and a whole bass while they're at it.

My Diagnosis of Different Names

Today, for a more complete diagnosis, the IDSA would consider me a "Category 4 patient who has Post Lyme Disease Syndrome (PLDS)".

This would be based on case definitions, clinical diagnosis, and my patient history:

Several years ago I got bit by a tick and got a textbook case of Lyme Disease, and since then, I have not seen the same level of health I had before the bite and infection occurred. I suffer from fatigue, musculoskeletal pain, difficulties with memory and concentration, and a few other symptoms.

My original diagnosis for Lyme Disease was met on these points:

• I was bitten by a tick in an endemic area.
• I had an expanding erythema migrans (EM) rash around my tick bite.
• The rash continued to expand and within ten days I began to show full-blown signs of a flu-like illness matching symptoms of Lyme Disease.
• I have had positive serology for Lyme including a CDC positive Western Blot.

Anyway, I say all this to substantiate that in my case, that even by the IDSA's definition I have had Lyme Disease.

Not that this does me any good, to be believed by the IDSA on this point - identification under any of the above categories does nothing to help the Lyme patient receive effective treatment from IDSA doctors once the patient has received the standard treatment described in their guidelines.

Only LLMDs and alternative practitioners are trying to treat these groups at present.

What becomes an issue and is a big part of where the "Lyme controversy" comes from this:  

Whether or not the symptoms I had for weeks after treatment up through now are the result of continuing to be infected by Borrelia bacteria that are hard to kill off, or - by the current IDSA guidelines group's line of thinking - if some post-infectious process is taking place in my body which is producing my symptoms.

Once I went online seeking out information about Lyme Disease, it became clear that Lyme patient support groups and a number of doctors believed that Lyme Disease could be chronic in nature.

Other patients and some doctors have called my condition "Chronic Lyme Disease with coinfections".

And it was only later on that I began to dig more into research online to find out what different parties and institutions were finding and saying.

Most recently, Dr. Benjamin Luft spoke at an Institute of Medicine workshop in October 2010 and called my condition a sort of "Lyme Borrelia Complex". In so many cases, he knew ticks and patients were simultaneously infected with Borrelia and at least one coinfection, so this term may be more applicable than Lyme Disease to begin with.*

Documenting Chronic And Persistent Infection

While there is plenty of evidence that Borrelia spirochetes do persist in the host after antibiotic treatment - and even members of the IDSA have stated the spirochetes persist in their own research - the IDSA Lyme guidelines group currently question the spirochetes' ability to cause infection and has stated that they have no clinical significance. The IDSA has also stated that Lyme Disease is easy to treat and quick to cure.

For many Lyme patients, there is trouble with this stance because they have found research publications and patents by the same IDSA members which contradict their own position statements.

In the IDSA's and NIH's own research, Chronic Lyme Disease has been a consistently used term and their past usage of it has been connected with Borrelia infections which can persist in the host. As recently as 2005, IDSA members have filed a patent which mentions Lyme Disease as being difficult to eradicate. Also, researchers in other countries have found evidence that Borrelia infections can persist.

This leaves people questioning why it is they are finding contradictory statements about Lyme Disease coming from the same source - as well as from different ones.

Members of the IDSA guideline group have also stated that those with PLDS may be suffering from an autoimmune or immune dysregulation order. There has been no conclusive proof to date that CLD is caused by an autoimmune or immune dysregulation disorder, even though it may play a role in the disease process.  And unfortunately, unlike CLD, there is currently no treatment available for this disorder if it is the cause.

If I knew for sure this was the problem, and there was another treatment for it, I'd avoid taking one more milligram of antibiotics unless another infection came along - like bacterial pneumonia.

The Patient's Dilemma

So a patient in my position who is suffering from symptoms has these choices available to them:

1. Believe the IDSA and do nothing. Maybe it will get better over time.
2. Believe the IDSA and see a doctor or several doctors to find out if something else is wrong.
3. Don't believe the IDSA, and try longer antibiotic treatment. Maybe it will help.
4. Don't believe the IDSA, and try some alternative treatment. Maybe it will help.
5. Don't believe the IDSA, and try longer antibiotic treatment and something alternative. Maybe it will help.
6. Don't believe the IDSA and do nothing. Maybe it will get better over time.

It is not known how many CLD patients choose #1 or #6, and for how long that remains their position. Patients who have chosen #2 may start out with a non-CLD diagnosis and investigate whether or not they have CLD later on. The vast majority of CLD patients choose #3, #4, or #5 after they have been severely ill for some length of time and no other cause has been found.

Due to the severity of my symptoms that continued after the first three weeks of antibiotics, I made choice #3: continue antibiotic treatment. I tried additional treatment knowing what the risks were and went against the recommendations of the IDSA guidelines.

At the time, I was seeking to address what were not mild and vague symptoms but severe ones which prevented me from working and from even doing the most basic tasks like showering and preparing dinner.

I ended up visiting the ER more than a few times during my illness. If my condition were mild, I would not have been in the ER... I would have gone to work and made dinner.

In my case, extended antibiotic treatment eliminated a number of the symptoms I was experiencing - and for a time - diminished the intensity of my remaining symptoms. I did not think it was a poor choice to extend treatment, nor did my doctor. It was well thought out, and based on my responsiveness to treatment.

My issue now is that even as I have improved, I haven't regained my former health. Is this it,  have I hit the wall - or is there anything more I can do? I wish there was a definitive answer for me.

As it stands, I have the choice to either continue to follow treatment under an LLMD and/or alternative practitioner, self-treat holistically, or do nothing. I eliminate the other numbers in my spectrum of choices because I already see a primary care physician and other specialists concurrently to make sure I'm not missing anything else that could cause my symptoms as they come up. I have my bases covered.

What About The Original Question?

So we've gotten this far, and I guess I still haven't completely answered the question, "Is chronic Lyme real?"

What I've tried to do first in addressing that question is raise awareness that one's answer to that question depends on what they mean by the term, "Chronic Lyme Disease". The way the IDSA and its recent literature define CLD is the polar opposite of how the Lyme patient community defines CLD.

And I'm not entirely sure when the change in that use of the term took place and how consistently it has been applied - I still come across documents and research which use CLD in terms of persistent infection.

The IDSA needs to do more research on tickborne infections and clear up any inconsistencies in their research. It reflects poorly on them to contradict themselves, and to also base their guidelines on so few trials and limited understanding of not only Borrelia's pathogenesis but tickborne coinfections and immune factors as well.

Independent research groups and institutions with no investment or conflict of interests in tickborne disease research outcomes would be beneficial in providing unbiased confirmation of research that has been done - or better yet, do the research in areas the IDSA has been avoiding or under-serving.

I am not enamored of the one cause hypothesis when it comes to describing my own condition, because I don't think the issue is as simple as whether or not I have a chronic infection with Borrelia burgdorferi.

I may be infected with more than one strain of Borrelia and/or infected with a non-burgdorferi one.

There is objective evidence (serology) I have had at least one coinfection and it is one that has been proven to relapse. I may have other coinfections that have yet to test positive, and I may have additional coinfections for which there are no tests because they have not been identified.

It may be that coinfections are truly more my problem than Borrelia is.

I don't even think the issue is as simple as to whether or not I have an infection with Borrelia and Babesia, and possibly other coinfections, too. It's possible that I am a not only a polymicrobial soup du jour, but I am also suffering from an immune dysregulation disorder that was caused by the very pathogens which invaded me.

It's possible that my genetic profile left me more open to systemic disease than other people who have been bitten - but also possible that the specific genotypes of Borrelia are harder eradicate than others, that they have their own unique synergy with coinfections which make the infections harder to effectively treat, and that regardless of genetic background - would be difficult to treat in anyone.

And there are more possibilities which I am not listing here which may give rise to my condition.

So to say it's either persistent infection or an autoimmune/immune dysregulation disorder causing my problems seems a shortsighted simplification until more research is done and we really know what is going on.

After all of this discussion about whether or not chronic Lyme is real, the one thing to know is that the quote at the top of the page is definitely something to consider: the more you learn, the more there is yet to learn.

Any one post I make here - whether it's a study or commentary or article - is only going to touch on the edges of one facet of tickborne infections. The challenge is to take all of the information that is available and glean what is high quality, what is not, and what has yet to be determined to create a more informed picture of the problem.

Is Lyme Disease a disease that can be with you forever? Do certain conditions give rise to a lasting infection that can be eradicated eventually - and permanently? Is any symptom post-antibiotic treatment - even after much treatment - signs of a continuing infection or residual symptoms which will always be with you?

My suspicions are: conditionally yes, yes (but you could get re-infected), and maybe. More pieces of the picture are needed, and it will take separate posts just to begin addressing each of those questions on their own and confirm or even challenge my suspicions.

What does it take to confirm or challenge yours?

* I think that even in the Lyme patient community, many would think that CLD is a very basic definition of what they are suffering from and another term that I would use which may be more accurate based on their reported symptoms is this: Tickborne Disease Complex (TDC) or maybe even PTDC, where the 'P' stands for Persisting. Dr. Luft's term, "Lyme Borrelia Complex", isn't a bad idea, either.

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