This past weekend, May 16-18, many Lyme disease patients, their advocates, and organizations hit the streets, sent out tweets, and held events not only to spread awareness about Lyme disease around the world - but to be a vocal group protesting the current state of affairs regarding how the medical community manages tickborne diseases.
I admit I'm late to the game on this one, having fallen behind on some of the activities going on in the Lyme disease advocacy world and focusing more on new research, a few Lyme disease related bills making their way through state and national governments, and as usual, my own medical concerns.
This past weekend was particularly challenging while using of Twitter because I was in a position where many Lyme disease advocates were posting about various Lyme disease awareness events and, at the same time, microbiologists I follow began tweeting from a major microbiology conference which had just begun in Boston.
Now, I'm not really good at multitasking even in the best of times - but it was a serious challenge to figure out how to divide my time, focus, and energy up in order to retweet items which caught my eye during the weekend.
So I may not have split the difference that well, and for that I apologize to anyone hoping to see more of a specific type of content in my tweets and retweets. I was having a difficult time prioritizing what to post, in being mindful of my audience as well as my own interests.
At the same time, I feel pretty confident that those who organized their regional protests for the worldwide Lyme disease awareness protests were doing well at the task ahead of them and doing a better job than I can about letting everyone know why they were protesting and how many different groups around the globe were involved. Advocacy can come in many different flavors and forms, and perhaps it's even fair to say I'm not the best person at organizing protests and rousing the crowds.(I don't know, by the way, on the basis of never having tried it.)
And also I'm somewhat unnerved at the prospect. An active, outgoing role for advocacy is best left to people who are somewhat further along on their recovery from illness than I am, because they can go forth in the world with a stronger physical presence; they have the stamina to spend hours walking the pavement when I do not.
But even as I sit here at home, catching up on some rest and periodically sitting down to write this blog, I wish I had given more of my attention to this protest earlier because of its mission statement and what it says.
The home page which is the primary organizing force for these Lyme-aware activities around the world,
worldwidelymediseaseprotest.blogspot.com, posted the mission statement of the worldwide protest and what protesting patients and advocates around the world say they need…
Worldwide Patients are raising awareness and protesting to highlight the need for:
1. Recognition that Lyme disease/borreliosis, and other tick-borne infections, such as Babesia, Bartonella, Rickettsia, Ehrlichia, are serious, and sometimes fatal illnesses.
2. Awareness of the fact that the transmission of tick-borne pathogens, such as borrelia, babesia, rickettsia, via blood transfusion is of global concern.
3. Agreement that Lyme disease/borreliosis should be listed as a notifiable infection. Notifiable status will aid in ensuring that the incidence and spread of this disease are monitored, a necessary precursor to determining the human suffering and socioeconomic impact of the disease.
4. Education of the healthcare sector regarding the accurate diagnosis of Lyme, which in some cases may be limited to clinical presentation due to limitations of serological testing.
*Education should ensure all doctors are familiar with the CDC caution pertaining to criteria for blood tests for Lyme: “This surveillance case definition was developed for national reporting of Lyme disease; it is NOT appropriate for clinical diagnosis...Surveillance case definitions are created for the purpose of standardization, not patient care.”
* Education that Lyme should be included as a differential diagnosis when considering other illnesses that are also reliant on subjective clinical presentation, or have no known cause. This includes, but is not limited to: Motor Neurone Disease (MND) also known as Lou Gehrig’s disease or Amyotrophic lateral sclerosis (ALS) ; Multiple Sclerosis ; Alzheimer’s; Parkinson’s disease; Sarcoidosis.
5. Education of the healthcare sector regarding affordable and effective treatment of both acute and chronic Lyme and other tick-borne infections. This includes the need to update the outdated treatment guidelines of the Infectious Diseases Society of America (IDSA) and to take into account the treatment methods of other Societies such as: The International Lyme and Associated Diseases Society (ILADS) and the German Borreliosis Society (Deutsche Borreliose-Gesellschaft : DBG)
6. Funding for research into tick-borne diseases. Including: Funding for medical research into accurate Lyme testing and treatment ; Funding for research into vectors and reservoir hosts to determine what diseases they may carry and transmit.
Thoughts on the mission statement
I agree with these statements in general: There is no argument that tickborne diseases are serious and can be fatal, that we need to be aware that they could be transmitted through blood transfusions and we don't necessarily screen for them or even have standardized high volume tests for them; that better tracking of Lyme disease suspected and confirmed cases would be helpful in getting a better estimate of cases and their socioeconomic impact, that the medical profession needs to be aware of the limitations of serological testing in diagnosing Lyme disease, that guidelines which are outdated need to be updated, and that more research needs to be conducted on Lyme disease including research that leads to improved testing and more effective treatment as well as achieving a better idea of which diseases are being carried and spread.
Phew. I need a deep breath after that paragraph.
The mission statement as outlined is a good one - a starting point, a talking point on which more discussions can be built and more meaning added to it by those who are presenting it to a crowd by sharing it online and sharing it on the streets.
I already know and understand the six items, intimately, because I have suffered with Lyme disease and Babesia, have been dealing with persisting symptoms for a long time - and after finding others in a similar situation want similar items addressed.
And a large number of people came to an agreement on what this mission statement says because they, too, have shared my experience of not having been properly treated for Lyme disease as early as we could have been and have had to live with complications due to delayed treatment - as well as being co-infected and/or possibly due to other factors we have yet to fully understand.
With this in mind, it's important for those who are not patients and advocates to understand that much of what is written is a cautionary statement, written through suffering and pain by people who have endured persisting symptoms after contracting Lyme disease who want to prevent even just one more person from having to experience the hell they have experienced.
And that would include me. I don't want anyone to experience the hell I've been through and the problems I still have.
The message to anyone healthy reading along from Lyme disease advocates to you is :
We want you to stay well. We want you to be healthy. We want you to engage in jobs you enjoy, buy a house, finish that degree, have loving relationships, raise kids, play sports, go out and about and do lots of things. All the things that - by the way - a number of us can no longer do and fear we may never achieve.
None of us would be here - either me writing this blog or these folks writing up a mission statement who are out protesting on the streets and from their computers - if we didn't each either suffer from the consequences of tickborne disease or are close to someone who has. We would be doing something else, and quite possibly doing something else our hearts yearned for, that we long dreamed about - only to have those possibilities crushed out of us due to being fatigued and enduring unpredictable cycles of dysfunction and pain.
Blood tests
… That is why we want better blood tests - ones which are effective early on, and can catch the presence of a tickborne infection before the worst symptoms set in.
We want to see those of you who are newly bitten swiftly tested with accurate tests and promptly treated so you can avoid more serious symptoms and worse, more serious persisting symptoms that disrupt your lives for months and years to come.
The way things are now, it can take 4-6 weeks after a tick bite for antibodies to Lyme disease show up from a blood test. Sometimes it can take 8 weeks or even longer.
If a patient has Lyme disease but never has a rash, the diagnosis may be missed. An early negative blood test can delay treatment. This is important because those who are treated with antibiotics early on are
far less likely to experience severe symptoms and complications from Lyme disease.
And now, there is a new relapsing fever spirochete carried by the same kind of tick which carries Lyme disease -
Borrelia miyamotoi. And this spirochetal disease gives you symptoms very similar to Lyme disease - yet patients with it rarely see a rash and a blood test for Lyme disease will never be positive when you're infected with this organism.
Borrelia miyamotoi is a serious infection which needs antibiotic treatment.The earlier it is diagnosed and treated, the better. In a Russian study of patients with infections with
Borrelia miyamotoi, symptoms were more severe than those found in patients with Lyme disease and more patients needed hospitalization and intravenous antibiotics compared to patients with Lyme disease.
Doctor education
It's not just that better objective testing for the presence of infection with Lyme disease is needed. It is - that's true. But it's also true that what's needed are better methods of assessing patients for the possibility a tickborne disease is causing their symptoms in the first place and that tickborne diseases beyond Lyme disease also have to be taken into account.
The poor bastard who has flu-like symptoms, a migraine-like headache, high fever, and is severely fatigued who repeatedly tests negative for Lyme disease and is told it must be in his head needs to become a thing of the past; a relic.
A Lyme disease test will never be positive for
Babesia and
Borrelia miyamotoi here in the United States, no matter how many times you run it - and yet the patient will still be sick.
Not crazy. Sick.
The same applies to someone whose initial Lyme disease serology is negative yet they appear ill after having had a tick bite. Doctors need to look for coinfections. Retest for the presence of Lyme disease antibodies later, because the first test may have been too early even at 4 weeks for that specific patient. Read the literature about comparing different labs' tests for Lyme disease serology. And when it's clear the patient doesn't have a viral illness after symptoms continue to worsen and do not progress like the typical flu; when there's no recovery coming and the chest x-ray is clear... further investigation is needed.
Doctors need to recognize this, grapple with it, and by default begin to look for a physical cause for patients' symptoms before resorting to psychiatric labels. After all, we can't all be "crazy". And if we are, then that is something our society seriously has to investigate - because either the numbers are being inflated or as a culture we are downright pathological.
(This is, by the way, not to say that every patient with flu-like symptoms, a migraine-like headache, and high fever automatically has a tickborne disease. Not all all. It's just something that should be considered in the differential diagnosis more often than it has been in the past.)
Side note:
I do not envy today's medical students, and the world they are entering as doctors. They will not only be facing the spectre of increasingly antibiotic resistant infections and the resurgence of measles and polio - they will be facing the onslaught of vector-borne diseases which are spreading to areas in which they had formerly receded or where they previously had never been. They will be facing diseases carried by mosquitoes and ticks that were previously viewed as exotic and foreign - only to find they knew no borders, and could travel here just as people and birds do.
Any awareness of Lyme disease is just that - a narrow band of awareness focusing on one disease. Looking at other potential pathogens which can infect people is important, too, and becoming a medical detective is going to become a more prominent part of the job of being a doctor.
Who knows who will discover the next patient 0?
Make tickborne diseases reportable - and don't stop there
Once someone has a tickborne disease, it needs to be reportable. Both suspected and confirmed, in order to get a better estimate of the number of cases out there - but also to help form a picture of how cases present themselves based on the clinical picture.
Given that 10-20% of all patients who contract Lyme disease develop persisting symptoms after initial antibiotic treatment under existing IDSA Lyme disease panel guidelines,
I would also make chronic Lyme/post treatment Lyme disease a reportable condition.
No one to my knowledge is reliably tracking this condition and the number of patients who get it. And while many patients claim they were diagnosed with chronic fatigue syndrome or fibromyalgia only to find out later on they had Lyme disease, I don't think anyone has made a point of looking back in time at all their patients' files to see if those diagnosed with chronic fatigue syndrome or fibromyalgia had a documented record of a tick bite or previous diagnosis with Lyme disease - which could very well mean what they're really seeing in front of them is a case of chronic Lyme/post treatment Lyme disease which needs to be recorded.
Is it really 10-20% of an estimated 300,000 Lyme disease cases per year in the US - around 30,000-60,000 people a year who develop chronic Lyme or post treatment Lyme disease? Or is it more?
Or less? Most patients I know would scoff at the idea of fewer cases. But the truth is, we don't know, because chronic Lyme disease or post treatment Lyme disease is not reportable.
And as much as the CDC and other institutions prefer and support the use of the term "post treatment Lyme disease" or "post Lyme disease" over the usage of "chronic Lyme disease" in the US, it's not clear how often family doctors and specialists actually apply these diagnostic terms to their patients in clinical practice. Nor is it something I hear about much (though I have heard of one case of post Lyme disease syndrome as a diagnosis recently) within the Lyme disease patient community.
People with a history of a tick bite and a flu-like illness which follows and doesn't go away after initial treatment report that they were usually first diagnosed with something else after initially having Lyme disease - but not usually "post-anything" and certainly not chronic Lyme disease.
Guidelines need updating - and it's not just about chronic Lyme disease
In terms of guidelines… I'm possibly not going to have everyone jumping up and down in regards to what I write next, but I have to call it as I see it: Treatment guidelines for Lyme disease do need an overhaul,
period.
They either fall short of providing effective treatment for all patients who have been affected by Lyme disease or they lack studies which demonstrate high degrees of lasting positive outcomes for all patients.
ILADS guidelines acknowledge that patients who fail initial treatment may need additional treatment and it's okay to try empiric treatment to see if it helps in an individual case. This approach may or may not help individual patients - but given some patients report marked improvement, this deserves further investigation.
While their approach is something which requires more study and validation, at this point in time, patients have few options to explore in terms of treatment. Many are desperate for relief from pain, problems with short term memory and mental focus, fatigue, and other symptoms, and it would seem logical to try more antibiotics for treatment first as they are well studied, side effects are known, and it's thought a positive response to antibiotics confirms the presence of infection.
This perspective by patients has been questioned and denounced by some researchers, who state that a positive response to antibiotics is not enough evidence that patients' infections persist and they could just be having a positive response to the anti-inflammatory effect of certain antibiotics.
No one has conducted a study on this, however. And to this day, no one has conducted studies which apply the same antibiotic treatment methods ILADS does, either. There are no objective data on what works and what doesn't work beyond case studies and individual patient reports.
And at the same time, the IDSA Lyme disease panel guidelines fall short by failing to offer any form of treatment at all, not offering any off-label treatments which may be helpful, nor are they suggesting future directions for research. Instead, their 2006 guidelines contain a long list of treatments that patients should not have including vitamin supplementation. (Nevermind that in some cases a Vitamin D deficiency may add to patients' pain and supplementation could help with symptoms. That's not mentioned here, but surely it could be included in an update?)
If patients have any persisting symptoms past their initial guidelines-based treatment, most doctors currently offer patients antidepressants, anticonvulsants, and select pain medicine to treat the symptoms. Many patients report that these treatments do not consistently provide relief, though, and in some cases they do not help at all.
But let's look at one key source of the problem: The 2006 guidelines for the treatment of Lyme disease by the IDSA are outdated, and they are partially outdated
by virtue of there not being any large, new, double-blind random controlled clinical trials and/or controlled studies having been completed in the past decade which would shed light on how more patients could be more effectively treated.
The guidelines which the IDSA Lyme disease panel published in 2006 were largely a carbon copy of those published in 2000. Many of the cited studies in them were conducted in the late 1980s and early 1990s. The remainder of the guidelines are based on a few small clinical trials using a few months of antibiotics.
Since that time, further research on Lyme disease has raised questions about its pathogenesis and persistence in animal models, but the findings from these studies have not been directly applied to the practice of human medicine. It seems a solid translational model for all aspects of Lyme disease does not appear to be ready.
The chronic Lyme disease controversy is not the only one researchers need to investigate:
At the first mention of a tick bite, we want to be certain that one 200 mg doxycycline pill is going to be adequate prophylaxis against Lyme disease. Research by Piesman and Hojgaard in 2012 suggests one 200 mg pill may
not be adequate, and even before this 2012 study, one member of the 2009 IDSA review committee suggested that the strength of the quality of the evidence to support this recommendation was too high. (The committee as a whole also recommended grading of the evidence of this guideline needs to be carefully considered.)
In early stage Lyme disease, there is documentation of there being up to a 10% treatment failure rate.
In late stage Lyme disease, the guidelines state recovery after treatment may be incomplete. Late stage patients experience lingering symptoms, too.
But surprisingly, there is no specific advice in the 2006 guidelines suggesting what to do about this and how to treat the patient, and the only later suggestion I could find independently is to give patients gabapentin for neuropathic pain.
This, to me, sounds like more effective treatment is needed for early Lyme disease as well as late stage Lyme disease - regardless of what anyone thinks about chronic Lyme disease.
As for chronic Lyme/post treatment Lyme disease:
There are persisting symptoms in 10-20% of patients who contract Lyme disease, and some of these cases display symptoms which are equal in severity to cases of osteoarthritis and congestive heart failure.
These severe cases are not the equivalent of someone with the "aches and pains of daily living" which are blithely mentioned in the 2006 Lyme disease guidelines. These are far more serious cases not to be written off - just as those who develop heartblock, autonomic system disorders, short term memory loss, moderate to severe fatigue, chronic pain, and other neurocognitive problems are not to be written off, either.
In the end, people can (and will) argue all they want about whether or not extra antibiotic treatment is a good idea. What I'm doing, independently of that, is saying point blank that
regardless of that debate the current treatment approach under these guidelines isn't working for all patients. And it isn't working well for a sizable minority.
Either way, no one has conducted any new treatment study for chronic Lyme disease or post treatment Lyme disease in years - either using antibiotics or on new immune modulating drugs or even supportive treatment such as better pain management approaches.
And patients and their families and workplaces continue to pay that price, in the months and years of patients having debilitating illness, loss of income, and loss of productivity.
Research for tick-borne diseases
After all I've written in this blog since it began years ago, my main complaint, my main rant has not been addressed and it is that many years have gone by and there has been very little solid research on patients with chronic Lyme disease or post treatment Lyme disease or post Lyme (one, the other, or both) and very little solid research on potential new treatments for those suffering.
And all the concerns which are brought up, above, in the worldwide Lyme disease awareness protest mission statement are ones I share in terms of research:
We need more accurate Lyme disease testing,
and to know who is actively infected and who has had infection in the past. A solid direct detection test for this purpose would be great, and lack the issues a test for antibodies does. (In the meantime, perhaps a test like Spirofind will be helpful and offer additional support for diagnosis.) Right now, with the tests commonly used, it's not always easy to determine whether someone has an active infection or not.
We need better treatment and more options for those patients with persisting symptoms. And before someone jumps in defensively and says they are against seeing patients being treated with long term antibiotics, I'd like to add here that no one - not one patient I've talked to - actually
likes to be on long term antibiotics.
They are trying it because they have nothing to lose and are incredibly miserable. They are trying it because in many cases they fear they will lose a lot more than they would if they
didn't try it.
Their jobs. Their families. Their friends. Even their minds.
They are also trying it because there are very few treatment options available, people report improvements on it, and because antibiotics are considered a "known" factor - they are evidence-based drugs which have been clinically tested, have been used long term for various indications including acne, and their safety profile and risks are known. Beyond this, of course, anything a patient tries is either indicated as a treatment to address pain, followed by alternative medicine.
If there were more effective shorter term treatments which worked, if there were more effective pain treatments which worked - patients would be willing to try them. Just as patients are willing to try any of a number of treatments now to get some relief and get their lives back.
But they'll never get a chance to try anything new and evidence-based if no one does the research required.
People may argue that as long as they aren't sure what causes chronic Lyme/post treatment Lyme disease, then new treatments cannot be explored.
Nonsense. There are plenty of other diseases and conditions which are not well understood for which treatment has been developed and tested. To some degree, it may be that new treatments
need to be developed and tested in order to acquire more knowledge about what is causing patients' symptoms - and to understand whether or not all patients are suffering with the same condition or if there are different subgroups.
We need more research into what kind of pathogens ticks are carrying and if they are pathogenic for people. This is a harder job to do, because new tickborne viruses, bacteria, and protozoa are always being discovered. I'm not sure how one is to stay on top of tickborne diseases in particular, relative to all the other new infections which are spreading across the globe. But it is a necessary part of understanding what is happening and be preemptive about zoonoses and the spread of vectorborne disease.
I'd also like to add here that we need more research into frontline prevention. Development of a product like the Kite Patch (but a version used for ticks, not mosquitoes) and vaccines which work against multiple tickborne infections which can be used in oral bait in the wild seem to be solid ideas to develop to prevent tick bites and reduce infection in host animals.
Missing pieces:
The need for better science communications on tickborne diseases in the media and public - and patient liaisons for those with persisting symptoms
An additional item I would add to this mission statement - or perhaps make it two items - is that patients and the public need better science communications on tickborne diseases in the media, and also a patient liaisons who are educated, articulate, and can work to represent patients in a research and public health context (refer to PCORI for an organization which already does this kind of work).
The way Lyme disease is discussed in the media right now has to change. It's been dumbed down, the debate between two sets of doctors has been fired up in articles in order to sell papers, and the actual research being done on the disease is either seldom mentioned and sometimes when it is, important details get lost.
I'd like to see more people in public discussing Lyme disease and other tickborne infections who actually do research on it, who are familiar with the debate over whether Lyme disease can persist or not, and who are not caught up in the middle of the debate share their knowledge and questions they think need to be asked to resolve controversies over persistence. I'd also like to see more medical professionals including immunologists and pain specialists write more about what kind of novel therapies they might suggest are worth trying now which would help patients feel better and improve their quality of life on top of or instead of treatments they are already trying - and to discuss the possibility of new research.
Seeing more articles written about Lyme disease and other tickborne infections, more science blogs about Lyme disease and other tickborne infections, and more educational outreach in the form of websites and books by those educated about them who can outline the certainties and uncertainties about these diseases would go a long way towards reducing ignorance about them and provide an alternative to sites which are filled with misinformation and conspiracies.
As for patient liaisons, patients with persisting symptoms related to tickborne infections need to have greater representation in the kind of research that is being funded and what will help those who are most severely affected by tickborne disease.
As it stands, a lot of the frustration which is shared within the Lyme disease patient community is over the lack of more research on their condition and lack of communication about why there has been no patient-centered assistance from groups such as the IDSA Lyme disease guidelines panel (and if anything, some patients have been individually and collectively insulted by select members of this panel (documentation of this can be found elsewhere online)) and limited assistance and communication from those who make funding decisions for government funded Lyme disease research.
Those with persisting symptoms question why there is yet another study on
erythema migrans rashes and so little research on their condition, and want to know how study selection is determined and when and how their concerns can be addressed in a research context. But according to many patients, there has been little to no positive direct communication about these matters from certain organizations such as the IDSA panel with patients and their advocates.
It is this attitude of disdain or act of avoidance of patients' concerns which many consider unprofessional and which prompts me to wish that a new panel could be elected which can better reflect patient concerns as well as represent the state of the science including uncertainties - and reduce the burgeoning weight of the history of the debate in Lyme disease.
Clearly, more positive engagement is needed between patients who suffer with persisting symptoms, their advocates, and those who wield incredible power over making decisions as to how to treat their condition and what is worthwhile research.
And before I forget: We Need Open Access Research
One frustration I and others face in trying to understand the history behind how Lyme disease is tested for, diagnosed, and treated - as well as the current sociopolitical climate involving Lyme disease research and advocacy - is that most of the peer-reviewed publications about Lyme disease, chronic Lyme disease, and post treatment Lyme disease are behind paywalls.
Some of these papers have major implications for Lyme disease patients and yet many cannot access them and learn for themselves what the arguments are between academic doctors, medical organizations, advocacy organizations, and others actually are when it comes to Lyme disease.
Often, misinformation about the content of different papers gets shared and spread amongst patients who do not have access to the original copy. From there, it's all over the internet, with facts mixed in with fiction.
Was something in that paper? Wasn't it? Who knows, unless you have the $30 or more to shell out for it. (Most don't. And even if you do, 24 hours of access is not enough.)
Some publications have old data which may have been overlooked and could be useful in revisiting in order to take new directions in research, and duplicate old studies and retest hypotheses. But patients and advocates can't even access many of these papers even though they may date back as far as the mid-1980's, not long after
Borrelia burgdorferi, the spirochetal bacteria which causes Lyme disease, was discovered. To me, this is ridiculous and it needs to change.
Closing comments
I agree with all that is within the mission statement and yet I think in actuality it needs to go further. The strength in a protest which has a petition or plea for certain changes to be made is improved by getting into the details more and asking for more specifics that would be useful in resolving the problems which have dogged Lyme disease patients and advocates for many years.
Decades now.
And I think it must be emphasized that there have been problems with the scene in Lyme disease for many years now, and nothing has changed in many ways. That's the biggest item to me really, that I'd like to protest.
