Prominent Neurologist Calls Lyme Disease ‘A Human Rights Concern’
Dr. Elena Frid is a New York-based board-certified neurologist and clinical neurophysiologist who specializes in infection-induced autoimmune disorders. I first met Dr. Frid in Amsterdam last May, where she was speaking at the Lyme disease awareness event Something Inside So Strong. We had a chance to speak about Lyme disease there and then again at a national Lyme disease awareness event in Ottawa, Canada in June. I was struck by Dr. Frid’s patient-focused approach, and especially by her assertion that Lyme disease is “a human rights concern.”
In the following three-part interview, Dr. Frid and I discuss myriad topics associated with chronic illness and Lyme disease, beginning with the June 15 issue of the CDC’s Morbidity and Mortality Weekly Report (MMWR) and related news coverage.
The June 15 CDC MMWR presented five case reports of chronic Lyme disease patients who appear to have received extreme treatments or mistreatments, or they simply suffered severe consequences of Lyme disease treatments, including septic shock, a “superbug” infection, and in one case death. This summary of five cases was presented as evidence of a problem throughout chronic Lyme treatments. Resulting coverage in the Washington Post reported the findings as “Dangerous unproven treatments for ‘chronic Lyme disease’ are on the rise.” [Note: The CDC report actually states that “The number of persons who undergo treatments for chronic Lyme disease is unknown, as is the number of complications that result from such treatments,” with no suggestion of rising rates.] What’s your impression of this publication and how it has been received? Do you know of any other examples of five case reports being presented as representative of a prevalent, widescale medical negligence?
Dr. Frid: My general reaction is that I feel after all the good Lyme awareness that occurred during the month of May, this report was a step back for the cause. It was a skewed view of what is going on with this disease. It was really focusing on a small group of people who seem to be very sick in the first place, and who did not do well with treatment, which is very unfortunate. Obviously, we want to save every single person. In these particular instances, this was not the case. This report did not touch on the vast amounts of people who are being treated and helped, and who return to their high functional status because of their Lyme-literate physicians.
The number of patients with such severe symptoms and consequences…does anybody have any idea, even a guesstimate, of how many patients have chronic Lyme as opposed to an acute infection?
The CDC is reporting over 300,000 new cases of Lyme disease per year. On their website, they state that 20 percent of new cases will develop chronic/persistent symptoms or what they call post-Lyme syndrome.* The CDC reports that the cause of these persisting symptoms is unknown but suspected to be an autoimmune phenomenon.
Some members of the [International Lyme and Associated Diseases Society] ILADS , state that 300,000 new Lyme cases per year is an underestimate, suggesting that over a million new Lyme cases per year is a more accurate representation of this disease. They quote 40–60 percent will develop chronic symptoms. Also, if you go by fibromyalgia cases, over 5 million people suffer from fibromyalgia annually in the United States. If you consider the fact that some of these patients have an underlying infectious etiology such as Lyme disease as the underlying cause for their symptoms, one can reason that we are talking about a large group of people.
That’s one of the reasons I’m intrigued by what you talk about, as opposed to some other doctors who address Lyme disease. You talk about how other diagnosed illnesses such as fibromyalgia may have underlying infections. This isn’t a common point of discussion, either in health- and medicine-related news stories or in doctors’ offices. What’s the basis of this notion, and as far as the guidelines and/or regulations from agencies such as CDC or medical boards, do they have opinions on this? From the research side, is there any investigation into whether some presumed autoimmune conditions may have underlying infections?
If you look at fibromyalgia, in the last year, evidence has come out showing that some patients test positive for small-fiber neuropathy on skin biopsy. This finding is an indication that there is an underlying disease process rather than grouped symptoms presenting together without a cause or better yet a psychiatric disorder. There is evidence that it is an organic problem, perhaps an overactive immune or inflammatory response that’s triggering these reactions and actually causing nerve damage.
Patients may come into my practice with a diagnosis of fibromyalgia. But when I obtain a thorough history I realize that their symptoms are very complex. To [encompass all that’s going on with a particular patient], one would give multiple diagnoses, such as headaches, anxiety, chronic fatigue syndrome, insomnia, attention deficit disorder and more. After getting an extensive work up many times, if there are no specific underlying medical issues that would explain the symptoms, many will have subtle changes like abnormalities of their immune status or abnormal inflammatory and autoimmune markers, as well as in some evidence of exposure to various infectious pathogens from specialty labs. So when you start putting the picture together it is evident that in these instances the “fibromyalgia” symptoms have an underlying identifiable cause. And most importantly, when you treat the underlying cause, their symptoms resolve.
Looking at the information that’s being publicized, I see the same thing that you’re describing. A door seems to be opening in which agencies are suggesting chronic Lyme may be autoimmune, may be caused by permanent nerve damage. The post-treatment Lyme disease syndrome (PTLDS) pageof the CDC website suggests that “some health care providers tell patients that these symptoms reflect persistent infection with Borrelia burgdorferi. Recent animal studies have given rise to questions that require further research.” It seems like the door is a little bit open, but then the MMWR intentionally discourages approaches to treatment as if Lyme is a persisting infection. On top of that, the MMWR doesn’t suggest the importance of further research to better understand the disease itself. The CDC is charged with protecting public health by controlling and preventing the spread of disease. From a public health standpoint, how does this make any sense?
It doesn’t make a lot of sense. There may be things going on behind closed doors but this information I am not privy to. There are big-name private institutions that are invested in research and are being public about it, like Johns Hopkins University as well as Duke University. I think that there are people in the mainstream medical community who are looking into Lyme disease. The CDC is likely as well. What we see, however, is what’s available on the website and via the [Infectious Diseases Society of America] IDSA guidelines. As you say, it is encouraging that a crack in the door is opening, but this [CDC] article really is painting a very different picture.
It’s occurred to me recently that there are established paradigms set up for these things. For example, I can’t make much sense of the way the Zika virus, for example, has been handled by federal agencies. A state of emergency was declared. Emergency funding in the amount of $1.9 billion was requested by President Obama and $1.1 billion was received from Congress to combat Zika. And there have been just over 5,000 cases of Zika, with fewer than 250 of those contracted in the continental United States.
Meanwhile, the cases of Lyme are way, way off those charts, and NIH has only allocated $29 million this year for Lyme-related research.
On a per-patient basis, that’s about $220,000 per Zika patient ever and $79 per new Lyme patient. And despite the controversial nature of Lyme, it can be deadly, killing otherwise healthy young people with sudden cardiac failure in rare cases, and far more often robbing people of their wellness and ability to function. It makes no sense to me.
So something that just occurred to me is, what is the role of paradigms in established thinking versus reality? Hypothetically, what if there were no such thing as Lyme disease until this year? And then it emerged in the numbers and in the severity patients are complaining of. Wouldn’t it be treated as an epidemic that has to be addressed immediately as Zika has? It seems impossible that the medical community and public health agencies would deny the huge numbers of severe reported symptoms.
You are absolutely right. I think what you’re talking about is desensitization because we’ve been hearing about Lyme for four decades. And I think part of the problem is the mentality that Lyme is hard to catch, easy to diagnose, and easy to treat; where in reality the exact opposite is the case. Furthermore, the definition of the disease has not changed in 40 years. What I am talking about when I say “Lyme disease“ is a collection of infections, inflammation and autoimmune phenomena that affects multiple organ systems and if not identified and treated early develops into a chronic life altering and in some instances disabling or fatal medical problem. Patients are not taught that repeat re-exposure to disease-carrying insects may predispose patients to the Lyme disease that I defined above. Therefore, we need to be more vigilant about methods of prevention in both children and adults as in my experience, and I hear this from many colleagues as well, repeat insult to one’s immune system is what leads to chronic and life-altering symptoms. For more information on various methods of prevention please visit my website at www.drfrid.com.
In part 2, Dr. Frid will discuss the potential role of underlying infections in autoimmune disease processes, blood donation, and the prevalence of hospital-associated infections overall.
*Note: The CDC website presently states “in a small percentage of cases, these symptoms can last for more than 6 months”; however, the CDC website previously asserted more specifically that “Approximately 10 to 20% of patients treated for Lyme disease with a recommended 2–4 week course of antibiotics will have lingering symptoms of fatigue, pain, or joint and muscle aches.” I inquired with the CDC about why this information was changed on the CDC website, and whether the CDC has a more specific current estimate than “a small number of cases.” In response, a CDC spokesperson stated:
“CDC does not maintain statistics on patients with Post-Treatment Lyme Disease Syndrome. In regard to the frequency of Post Treatment Lyme disease Syndrome (PTLDS) that was previously cited on the web site, various studies have produced various estimates, and there are serious technical caveats to interpreting each. For example, new information published in 2015 (Weitzner, et al.) indicated a frequency of <5%; while information cited by Marques, ranged from 10–20%. For this reason, it was felt that providing one specific range (e.g. 10–20%) suggested false precision and therefore the page was updated.”
For more information about Lyme and associated tickborne illnesses, visit www.AndTheBandPlaysOn.com.