It's been a busy day for Lyme disease in the media today. And for me, too, as I have been trying to do some education (translation: damage control) regarding the inaccuracies which were reported concerning the findings from small study on Lyme disease that was recently published in the New England Journal of Medicine (summary only; full text behind pay wall).
With a sample size of 17 participants, the study advanced the idea that most patients who have new erythema migrans (also called "bull's eye") rashes have been reinfected and do not have a previous relapsing infection. Bacteria sampled from the new rashes and run through PCR do not match bacteria from old rashes from a previous infection - therefore, patients have been reinfected.
In and of itself, these findings are not problematic. And they make sense, knowing what is known about EM rashes and immune responses to Borrelia burgdorferi. It is only one small study, and I don't see it as earth shattering nor does it tell anyone everything there is to know about Lyme disease.
But what follows is problematic: A number of online news articles stated that this outcome provides evidence that Chronic Lyme Disease and (unwittingly, in some cases either implied or by extension) Post Lyme Disease Syndrome do not exist.
Now, while most Lyme disease patients with persisting symptoms support a chronic infection model, there may be some people who develop an autoimmune condition such as Post Lyme Disease Syndrome due to having had Lyme disease. I simply don't know, and think more research is required on this subject. But either way, the conflation of this small study's findings with the nonexistence of a chronic condition is erroneous.
Even by the IDSA's standards, some interpretations of Dr. Allen Steere's editorial which accompanied the study (briefly blogged about here on the NEJM) seemed to get it wrong. On one hand, Dr. Steere acknowledges persisting symptoms and he states that "infection-induced autoimmunity, retained spirochetal antigens, or both may play a role in this outcome." And on another, a number of journalists seemed to gloss over this statement and not mention it - alongside stating or implying that a new, acute infection is the only reason patients get ongoing or new symptoms.(Um, late stage untreated neuroborreliosis, anyone? Coinfections? These things can happen on occasion...)
This is incorrect, and so I've tried to correct this inaccuracy in reporting by responding to media outlets online. I've spent a good part of today looking online for articles which I could respond to about this issue, and noted that several news outlets and online magazines either do not allow comments on posts related to this topic or require one to post comments using Facebook and other services which not everyone uses. But I posted to as many places as I could, and wrote more or less the following comment in most locations:
"This is one of several articles I have seen which conflates this study on new rashes and new infection with the issue of chronic Lyme disease or persisting post-treatment symptoms - when the two issues are distinctly separate ones.
Even if one does not believe that Lyme disease can be a chronic infection (which in the scientific world it continues to be a matter of debate if a study like Dr. Embers' Persistence of Borrelia Burgdorferi after antibiotic treatment in Rhesus Macaques has been published recently and the NIH-NIAID is funding a xenodiagnosis study to see if human hosts with chronic Lyme disease can pass their infection onto lab-raised ticks - hardly a sign the debate has been resolved), the IDSA itself recognizes that a percentage of patients who were treated for Lyme disease go on to have persisting symptoms for months to even years after initial infection. Their organization thinks it is possibly autoimmune and call it Post-Lyme disease syndrome; there are now proteomics studies that have been done which provide markers for this condition.
Whichever model of persisting symptoms you support, it is incorrect to associate this one study with disproving the existence of either a chronic infection or post-infection autoimmune condition in patients with ongoing disease and disability since contracting Lyme disease.
I think that one also has to be careful about the utility of the EM or bulls' eye rash in proper diagnosis of Lyme disease in general: According to Dr. Jorge Benach of Stonybrook University, if more satellite rashes erupt after the initial rash (usually within weeks to months) the infection has disseminated. Also, not all cases of Lyme disease present with an EM rash, and research by Dr. Benjamin Luft has shown that some strains of Borrelia which disseminate with a rash do not cause disease and some without rashes do cause disease.
One study like this is not enough to set the course for Lyme disease, which is an emerging infectious disease which requires more research."
In other words, as it bears repeating: The rash is not the disease.
I really don't know what else I can say in response to these articles. I've made my point where I can, short of writing letters to the editor.
Other than this, of course, I recommend responding in your own way to these articles online and cite research that has been published or is currently in progress on Chronic Lyme Disease, Post Lyme Disease Syndrome, or both. And if you're a patient, inform people about the science that is out there and let them know you are in the 10-20% of patients who has persisting symptoms after initial infection with Lyme disease. You exist. Your condition is real.
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I'm so glad you are addressing this. I was shocked over the last week or so to be bombarded with all sorts of news releases about 1.) No chronic Lyme - just an auto-immune respone to the intial infection and 2.) No persistant Lyme, really = new infections because different DNA was found for the bacteria in patients.
ReplyDeleteDid I get that right? It seems so unfair to have someone seemingly spearheading a direct campaign against chronic Lyme. I mean I must have seen articles from about 20 diffrent publications. Most were worded about the same.
Plus the one study as you pointed out was a small study of only 17, right? Why would someone think that is earth shattering news? Why was it treated like breaking news of such importance and released to so many news agencies? What's the point? What ever happened to "It's too early to tell. more studies will have to be done before any real conclusions are made"?
I don't think studies supporting chronic Lyme get as much attention. To be honest, I'm still on the fence myself though. Yes, I was very sick for more than several years and took antibiotics for 2.5 years before suddenly showing a great improvement when a new one was added to the mix. I'm being cautiously optimistic that I will continue to improve and stay as well as I am. I've done the merry-go-round ride before and had a nice remission only to flare once again. Still, it was about 4 months of almost bliss this summer. I was 70% to 80% better and I was estatic. I've hit a little road block lately but it is what a GOOD day when I was sick used to feel like so I'm not complaining and I'm not back on the meds. I'm waiting to see how it goes more long term.
I've had multi systems involved and auto-immune issues before being diagnosed with Lyme and co-infections. But I suspect I was bitten at least twice, maybe three times in hindsight. The last bite did me in and my body/immune system just couldn't put up the good fight any more. Preliminary lupus tests keep coming up positive but when more definitive tests are run they are always negative. That's good. But I know several tests can show positive for Lyme an/or Lupus. I'm not sure what the connection is there.
Sorry for rambling. I'm just glad to see you addressing this news. It feels like a losing battle sometimes with the press though, eh?
Thank you,
Bea K.
Hi Bea K,
ReplyDeleteThe issue is a little more complicated than that, from what I read.
The way in which a number of articles about the study were written - as well as their titles - really seemed to misinterpret the content of the study and not simply state what the study found or describe the patient population which was treated in the study.
The study derived data from 17 patients out of a somewhat larger pool of 24. These 17 patients were followed by the researchers since 1991, and each time they presented with an EM rash, their rash was biopsied for spirochetes and those spirochetes were analyzed for their strain type (OspC RST is a consistent way to measure this).
Because the strain found in a new EM rash almost always did not match the strain of bacteria found in a rash from a year or more ago, the statement was made that patients who have symptoms after a new EM rash have been reinfected and it is not a relapse of a previous infection based on the analysis given.
While the study supplies interesting data about how common it is that a new infection can be produced by exactly the same OspC RST type of Borrelia burgdoreri, it neither actually supports nor denies the existence of a chronic condition outside of this. Neither chronic Lyme disease - nor a post Lyme, autoimmune-like syndrome.
For whatever reason - whether it was Steere's editorial which I did not acquire - or some journalists' misunderstanding of the actual study's content - the findings of the study were somehow pronounced by those journalists as providing evidence a chronic condition that is triggered by Lyme disease does not exist.
Ironically, if the goal by some of these writers was to support the IDSA and CDC's view of persisting symptoms related to Lyme disease as being a post Lyme autoimmune-like condition, these writers FAILED in that regard because some of wrote articles which implied that ONLY acute Lyme disease infections lead to persisting symptoms. Thus not only eliminating chronic Lyme disease - but the sanctioned IDSA viewpoint of what ails those of us with persisting symptoms.
So, even from the IDSA's point of view, one would think a number of journalists misinterpreted what was intended.
From a chronic Lyme perspective, the study simply isn't about chronic Lyme. That's the funny part about it... If you read it, you'd see it's about patients who have had early and early disseminated Lyme disease who were promptly treated and contracted new infections and were promptly treated again. Patients had early disseminated symptoms typical of Lyme disease like fevers and joint pain, but they never went on to late stage Lyme that was untreated or improperly treated - none of what I've read in the study thus far indicates that ANY of the study subjects had gotten to the late stage. I intend to reread again before I post more in depth about it, but I didn't see evidence the patients ever had persisting infection.
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So, my preliminary assessment of the study is that it isn't about patients with chronic Lyme disease or post Lyme disease syndrome. The message I get from it is that early treatment of Lyme disease is best (something we knew already) and new EM rashes mean you have a new infection, so treat it asap. It doesn't say anything about patients who have gone a long time without proper diagnosis and treatment. That's a separate issue.
ReplyDeleteYou said,
"I don't think studies supporting chronic Lyme get as much attention."
I agree. I think more treatment research needs to be fastracked for people in our situation, even if the cause of our condition is not entirely clear. Safe and effective medications that help alleviate our symptoms would be useful. I think antibiotics should be available on a compassionate use basis, especially in the absence of any other treatment one can use other than medicine that treats neuropathic pain. There just aren't enough "officially evidence-based tools" in the toolbox beyond antibiotics, though, so we struggle on our own figuring out what helps.
"To be honest, I'm still on the fence myself though. Yes, I was very sick for more than several years and took antibiotics for 2.5 years before suddenly showing a great improvement when a new one was added to the mix."
I understand being on the fence. I'm glad you found something that has given you great improvement. In your shoes I'd be wondering "Why this antibiotic, why now?". Especially after 2.5 years.
"I'm being cautiously optimistic that I will continue to improve and stay as well as I am. I've done the merry-go-round ride before and had a nice remission only to flare once again. Still, it was about 4 months of almost bliss this summer. I was 70% to 80% better and I was estatic. I've hit a little road block lately but it is what a GOOD day when I was sick used to feel like so I'm not complaining and I'm not back on the meds. I'm waiting to see how it goes more long term."
Sounds like a plan. Remissions are awesome. Knowing the overall trend is better is good to hear. I hope you are tracking this and seeing what - if anything - particularly helps or sets you back. It can be useful in the long run even if it doesn't seem like it at the moment.
Correction to post prior to above: I meant that there were 17 patients with 24 matched pairs of data. I think I was tired and wrote the wrong thing.
ReplyDelete