Dr. 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) page of 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.
I saw that a recent study describes a new discovery that Parkinson’s disease is “partly autoimmune.” Is that a new finding with respect to Parkinson’s disease? If it is, could that also crack open the door a little more with respect to Lyme disease? You have described Lyme as a multi-systemic illness that may be partially autoimmune, may include a persisting infection, and other complexities…
Absolutely. This is a new discovery for Parkinson’s disease. And honestly, our understanding of the immune system and the autoimmune phenomenon is evolving. Autoimmune encephalitis a diagnosis that came on the scene about 15 years ago is now becoming an important topic, and a number of big-name institution are investing in researching this disorder.
Bringing the conversation back to Lyme disease and associated disorders, I think that various infections can alter our immune system. Autoimmune phenomena that can arise in some patients may be induced by infections and some believe, like Dr. Charles Ray Jones, that this phenomenon occurs when one gets exposed to an organism that makes up a significant portion of one’s DNA leading to molecular mimicry and ultimately to an autoimmune process. A person can be predisposed to that process due to their genetic makeup.
Additionally, I suspect it’s not one tick bite that causes chronic Lyme/persistent Lyme disease symptoms. In my practice I often see recurrent exposure to various vector borne diseases with repeat insult to the immune system finally resulting in an autoimmune phenomenon. Borrelia burgdorferi, Lyme-causing bacteria, is not the only pathogen in question; many co-infections are at play in these patients as well. Therefore, if you have Borrelia burgdorferi that has been brewing in your body and your immune system has been able to handle it for years, at some point repeat exposure and stress to the immune system can trigger the development of an autoimmune disorder. In turn, for many patients this process is classified as post-treatment Lyme syndrome.
I’ve heard some infectious disease specialists talk about facets of the Lyme phenomenon that they discredit in various ways. One of those ways is to say that there’s a fanciful, complex story about how the Lyme bacteria work, which some people say is not realistic, not how bacteria work—that Lyme disease is a simple infection, it’s diagnosed with two simple blood tests, it’s treated simply with antibiotics, and then it’s cured. The common saying is “easy to diagnose, easy to cure.” And yet countless people nowadays who had once been diagnosed with and “cured” of Lyme are experiencing life-changing, long-term conditions, and in some cases it seems that because people had been previously treated for Lyme, doctors discount their worsening symptoms altogether as mental illness.
In April, someone close to me was in the hospital for 10 days with a life-threatening case of the bacterial “superbug” Clostridium difficile. She was down to 83 pounds and was extremely ill. She was treated with the antibiotics metronidazole and vancomycin. Those failed, and the antibiotics actually seemed to have made the infection worse. Ultimately, she recovered following a fecal microbiota transplant, and the hospital told her she’ll have to be very careful taking antibiotics from now on because the C. diff. will persist in her digestive tract, and if the balance of gut bacteria goes off, she could become dangerously ill again. In effect, the hospital told her that after she’s “cured” and resumes her life, the bacteria will remain in her gut, controlled by healthful bacteria, but the infection can come back again even following the “cure.” If she takes antibiotics, for example, this bacterial infection can “come back.” And yet Lyme patients are told regularly that once a person has been cured of the bacterial infection, he or she is cured for good.
Even disregarding the belief that antibiotics cure patients’ present infections permanently in all cases, some doctors seem to think, irrationally, that once a patient has been treated for Lyme disease, Lyme disease is no longer a risk. The first neurologist who was evaluating me for what he suspected to be multiple sclerosis asked if I had ever had Lyme disease; I told him that I had been diagnosed it and treated for it 15 years prior, and he said, “Oh, good, then you don’t have it now.” It didn’t occur to me, and it didn’t seem to have occurred to him, that living in a Lyme-prevalent area might result in a repeat infection. In retrospect, that seems remarkably shortsighted.
Given that certain bacteria such as C. diff. do behave in complex ways and that they can persist following antibiotics and following other interventions, where do you think the resistance comes from in accepting evidence that some cases of Lyme infection can resist or survive short-term antibiotic treatment? Is it from a lack of evidence of persistence in human subjects, even though it’s been documented in vitro (petri dishes)? Or is it just resistance to the notion?
Actually there have been human subjects. Dr. Liegner’s case was very well documented. Tessa Gardner has published a chapter on Lyme disease in Infectious Diseases of the Fetus and Newborn Infant 4th and 5th editions where she discusses vertical transmission of Lyme disease, mother to babe, with the infection being dormant in some cases for up to 2 years. I understand these publications were over a decade ago, but they are still valid. Additionally, I have looked into whether Lyme patients can donate blood. The CDC website doesn’t answer that question. They refer you to the Red Cross. The Red Cross also does not answer that question—but it does say if somebody has Babesia, a common Lyme disease coinfection, they are not able to donate blood. If, for example, you have malaria, even if you’ve been to a malaria-endemic country, you’re not allowed to donate blood for a year. Or if you’ve had malaria, you’re not allowed to donate blood for five years after treatment. Babesia is a coinfection of Lyme disease—we haven’t touched on that what we call Lyme disease is often more than one infection. This is an indirect way of talking about the reality that these infections can persist. But when we talk about patient care directly, the common assumption is that Lyme is always treated within 30 days or three weeks of antibiotics.
[Note: The Red Cross does not test blood for Lyme disease, and is conducting a limited investigational screening for Babesiosis. Babesia infections contracted through blood transfusions have been fatal, such as the 2015 case of former New Jersey First Lady Jean Byrne.]
I have looked into the blood donation issue for other personal reasons. I am gay and not allowed to donate blood because of my sexual orientation unless I attest that I have been celibate for at least 12 months. There’s a national ban on blood from gay men, a legacy of the HIV/AIDS crisis. The issue continues to be discussed in news media following mass shootings that result in blood shortages, yet irrational phobias outweigh science in the making and the 2010 upholding of this discriminatory federal policy. The ban persists despite almost 100 percent accurate HIV tests, and despite the knowledge that gay men are not exclusively susceptible to contracting or transmitting HIV—which has the effect of reminding gay men that we’re still considered “tainted” in many respects.
But I digress…
You and I were in Canada’s capital city, Ottawa, last spring to participate in a national Lyme awareness event called Voices of Canadians About Lyme, or VOCAL Ottawa. Following the event, I looked into the blood issue in Canada, as well, because Canada’s health minister, Jane Philpott, was busily raising awareness about the need for blood donations via social media as she was being criticized by Canadians’ loud calls to do more to help Lyme disease patients. Canadians who have Lyme disease raised questions on Philpott’s social media accounts about whether the country tests donated blood for Lyme and associated tickborne infections, which the federal government of Canada has identified as an imminent public health emergency, with “80 percent of the population of Eastern and Central Canada” expected to be at risk for Lyme by 2020.
Canada doesn’t ask whether a potential blood donor has or has been diagnosed with tickborne diseases, including Babesia, which is known to be transmitted via blood transfusions; however, according to this screening questionnaire, Canada will not accept blood from people who live with multiple sclerosis, which is not thought to be a transmittable disease.
This is a major tangent, but I found it interesting and strange, and the reason I mention it is because it calls into question a lot of conventional knowledge.
It would seem to be that when there is a risk of transmitting any disease via blood, the best public health approach would be to be as conservative as possible. For example, as mentioned earlier, a former first lady of New Jersey died from a Babesia infection that she contracted from a blood transfusion. New Jersey is only 500 miles from Toronto, so to ignore the possibility of this happening there seems foolhardy. And it would seem to me that if scientists truly are confident that multiple sclerosis is an autoimmune condition that cannot be spread among human beings, there’s absolutely no scientific basis for banning blood donations from people who have multiple sclerosis. (The United Kingdom states it bans blood donations from MS patients because the cause of MS is unknown and it may be transmittable via blood; however, Canada allows blood donations from people who have fibromyalgia, another presumably autoimmune disease of unknown origin.)
And so it seems to me that policies that have profound public health implications are not always based on medical evidence—unless these governmental agencies are privy to information that the public is not—but instead on fears that are not substantiated by science.
A couple of years ago when I was going through the diagnostic process, doctors suspected I may have multiple sclerosis. I was reading all I could about MS at the time, trying to understand what I might be in for, and after my Lyme diagnosis I remembered having come across maps of the global distribution of MS, which is unexplained considering that it’s autoimmune and the origin is unknown. Have you ever looked at the maps of global distribution of Lyme compared to the global distribution of MS?
I did not, but I’m assuming you did…
I did. And I sent them to several national MS organizations and asked if they’d ever looked into a potential relationship because the maps that show global incidences of both disease are strikingly similar. Representatives from two organizations wrote back and told me they had looked into it in the past and determined that any possible connection has been conclusively disproved. [The National MS Society states that “MS is not contagious or directly inherited.”] One took a long time to reply and the communications person told me that she was told “we wouldn’t touch this with a ten-foot pole,” which was so bizarre to me. The distributions overlap almost exactly…
The question of an infectious cause for MS has been raised multiple times, and it has not been put to bed. It’s been investigated whether a viral infection is the cause. They were looking into Epstein-Barr viruses, and from my perspective, it’s something that needs to be looked into and studied further. And that is exactly where funding that we’ve been asking for needs to go.
A big question I have about the June Morbidity and Mortality Weekly Report warning about the effects of treating chronic Lyme disease is that the CDC selected five isolated incidents of healthcare-associated infections to represent all chronic Lyme disease treatment cases. However, the overall prevalence of healthcare-associated infections is enormous. Does it make any sense to you that five cases of Lyme treatment-associated infections were selected when approximately 2 million cases of hospital-associated infections occur annually in the U.S., resulting in nearly 90,000 deaths?
I was actually looking into a report of Lorraine Johnson and Dr. Raphael Stricker looking at 200 Lyme disease cases treated with antibiotics, and they concluded that the complications from treatment of chronic Lyme disease with antibiotics, percentage wise, are no different than treatment of other infections. So I appreciate that they singled out these cases, but the outcomes appear to be no different than with other infections. The complication rate is absolutely equal.
Thank you for pointing this out.
We should be doing better—but we should do better across the board.
From the perspective of a Lyme disease patient, it seems unjust. You’ve said—I’m paraphrasing—that the Lyme disease epidemic is a human rights concern. Can you talk what you mean by that?
By ignoring this disease, we are contributing to senseless human suffering. Suffering of children and young adults, the majority of those who are affected by this disease, who lose their lifestyle, livelihood and even their lives to this disease.
Instead of showing them compassion and solidarity, these patients are often ostracized by the medical community, family and friends under the stigma of various mental health disorders.
They are left to fend for themselves isolated and paralyzed by their disease.
At best, many of them will navigate through life with some level of impairment or disability without the ability to achieve their genetic potential.
Instead of standing up for them through medical research and funding, we ignore their cries and label their symptoms and complaints as psychiatric.
Do you ever encounter critics, people who disagree with you, and have conversations with them about your point of view versus their points of view that this is more than a black-and-white, cut-and-dry thing? I guess they would say that your opinion about this is wrong. So what would you say to those people?
To be honest, the way I tackle this issue is by educating physicians. I have spoken at my alma mater to medical students about the complexity of Lyme disease. I have spoken on national and international stage, to both patients and physicians educating people about how much we don’t know about this disease and how much more needs to be done in order to be able to serve this patient population adequately.
I have presented my own data and data from my colleagues and predecessors who have done a lot of work with Lyme patients.
I advocate for patient-centric approach which is part of how we should be practicing evidence based medicine.
At the center of our treatments, trials, and protocols should be our patients. We should let the guidelines guide us but not replace and ignore what we see in the office in front of us. We need to move into the direction of personalized medicine.
Lyme patients deserve the same personalized approach to their treatment as cancer patients. We study cancer genetics in order to come up with the right treatment protocols for various malignancies. Lyme disease can be a chronic and heterogeneous illness that affects patients in many different ways and so our advances in medicine including gene therapy should be implemented in this patient population which is one of the many things research should be focused on.
*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.”