Ok. I am not a scientist. If someone wants to pay me the big bucks, I'm happy to play one on television. So far, no contracts have come my way. I'd be awesome, I'm telling you! Alas.
What I am is a patient. With a wonderful doctor who respects me as a partner in the care of my health. Though I often don't understand, much less remember, all the multi-syllabic words and biologic processes which get discussed in research which might be related to my health issues, he almost always shares abstracts with me and does his best to explain to me what it means. I'm reasonably intelligent enough to glean the key messages he is passing along. It tends to help me understand and/or evaluate treatment and testing decisions.
Since the last abstract he shared with me seemed like a meaningful piece of research which may indicate an opening for a shift in the way our medical community sees the ongoing ailment of those who do not recover health after the standard treatment for a case of Lyme disease, I thought I'd share what I learned. I'll keep it simple since don't really know what I'm talking about. What I learned that day has been further-informed and resourced by the ever knowledgeable 42. Many thanks to her for the background information.
May is Lyme Disease Awareness Month
Lyme is the most prevalent vector-borne disease and one of the fastest spreading diseases throughout the United States, and the subjects of diagnosis and treatment of Lyme are politically-charged.
This series of diaries is designed to provide information to the Daily Kos community both for Lyme disease prevention and for those Kossacks living with Lyme. Because the disease is often missed by physicians, these diaries may assist an individual or two in pursuing testing which might otherwise have been missed.
The Lyme Disease Awareness series is eclectic, including personal statements, informational pieces about the science of Lyme, and calls to action for community and political advocacy.
We hope you'll all join us all month in learning about this rampant disease and the medical/financial/political morass in which Lyme patients find themselves.
Whether or not you are a member of this group, it appears you will need to FOLLOW in order to have the diaries show up in your stream. We invite you to join and follow us.
I'm going to dive right in with the abstract my neurologist handed to me at my last appointment:
Anti-neural antibody reactivity in patients with a history of Lyme borreliosis and persistent symptoms.
Chandra A, Wormser GP, Klempner MS, Trevino RP, Crow MK, Latov N, Alaedini A.
Source
Department of Neurology and Neuroscience, Cornell University, New York, NY 10065, USA.
Abstract
Some Lyme disease patients report debilitating chronic symptoms of pain, fatigue, and cognitive deficits despite recommended courses of antibiotic treatment. The mechanisms responsible for these symptoms, collectively referred to as post-Lyme disease syndrome (PLS) or chronic Lyme disease, remain unclear. We investigated the presence of immune system abnormalities in PLS by assessing the levels of antibodies to neural proteins in patients and controls. Serum samples from PLS patients, post-Lyme disease healthy individuals, patients with systemic lupus erythematosus, and normal healthy individuals were analyzed for anti-neural antibodies by immunoblotting and immunohistochemistry. Anti-neural antibody reactivity was found to be significantly higher in the PLS group than in the post-Lyme healthy (p<0.01) and normal healthy (p<0.01) groups. The observed heightened antibody reactivity in PLS patients could not be attributed solely to the presence of cross-reactive anti-borrelia antibodies, as the borrelial seronegative patients also exhibited elevated anti-neural antibody levels. Immunohistochemical analysis of PLS serum antibody activity demonstrated binding to cells in the central and peripheral nervous systems. The results provide evidence for the existence of a differential immune system response in PLS, offering new clues about the etiopathogenesis of the disease that may prove useful in devising more effective treatment strategies.
Copyright 2010 Elsevier Inc. All rights reserved.
Why did my neurologist think this abstract was relative to my health care? Because I was diagnosed with Lyme Disease in 2007. I was given antibiotics for several months and I did not get better. That is, all of my symptoms continued. I continue to test positive for Lyme Disease and Ricketsia. I also continue to show abnormal morphology in my small-fiber peripheral nerves, conductivity abnormalities and demyelination in my peripheral nervous system, along with very specific cognitive deficits, balance issues and other demonstrable dysfunctions with my central nervous system. As far as I know, all known causes for these symptoms have been ruled out. (I've had a kazillion tests. That's a scientific number, isn't it?)
In 2009, thanks to the amazing people in the DailyKos community, I was able to get some very expensive neurological testing done in New York City. The neurologist there, along with my neurologist, then diagnosed me with Dysautonomia and Chronic Inflammatory Demyelinating Polyneuropathy (CIDP). However, all along, they have both stated that they are not sure that what I suffer from is exactly these disorders. It's more that I have the symptoms which match and they don't know what else to call it. Additionally, these disorders aren't really diseases. That is, they are a name for a cluster of symptoms without an identification for the cause. (As best I understand it. Perhaps someone else can explain this more clearly.) So, giving me these diagnoses doesn't explain why I have them. The only diseases I have ever tested positive for are Lyme and Ricketsia.
I had none of the symptoms of these disorders before I had these diseases. I was one of the healthiest people I knew. Rarely went to a doctor. Had been a competitive athlete. Was highly driven. I was Summa Cum Laude in graduate school and had a successful career of my choosing. Until I got these weird symptoms which increased in number and severity to the point of disabling me. It took 2 years to get that Lyme diagnosis. So, I had the disease at least that long before being treated. After treatment, I continued to have severe neurological issues.
I am one of those patients who fall into a Twilight Zone of medicine: do I have "Chronic Lyme"? What is the right treatment for a patient like me?
One thing my doctor and I have gone around and around on is the option of long-term IV antibiotics. I'm against them. It took a lot of convincing to get me take antibiotics in the first place. I worry about the dileterious effects of antibiotics on our immune systems and on creating resistant bacteria. So, I err on the side of avoiding them unless necessary. When I got the Lyme diagnosis, every practitioner I knew from acupuncturist to naturopath to doctor said, "Take the antibiotics." So, I did. And I didn't get better, so now what?
I have had to learn about the debates regarding whether Chronic Lyme is real. I'm one of those patients who was told it was all in my head, that it was a psychiatric disorder. However, the picture of my nerve endings prove that something physiological is going on. So, do those nerve conduction studies - which should be illegal as a form of torture, by the way. Just sayin'. I'm lucky in that regard. Not everyone has the awesome neurologist I have, who digs and digs until he finds something. So, it is not all in my head, but what is it?
Do I still test positive for Lyme only because my immune system holds onto the antibodies that were produced? Or are those spirochetes still hanging out in my tissues releasing their neurotoxins? Or are those anti-neural antibodies being generated by my own immune system? Would I have any of these neurological problems if I had never gotten Lyme?
Here is the bottom line for me: I don't really care why I'm sick, just don't try to tell me I'm not and don't try to tell me I don't deserve treatment. Figure out what can be done. I'd like my life back, thank you.
So, I find it kind of petty to hear about people in the medical field arguing over whether someone has Post Lyme Syndrome or Chronic Lyme. And I find it absurd that more research doesn't get done. I'm not a scientist, but I am a mystery lover. Seems to me we have a whopper of a mystery here and there ought to be enough scientists intrigued by the mystery to chase this one down. C'mon people! Where are our inquiring minds?!
But, I digress. (I do that a lot now.) Let's look at this abstract.
For those of us who are familiar with the infamous Chronic Lyme debates the first notable thing about this research is the list of authors. It includes known names from both camps of the debate. For instance, Gary Wormser, lead author of the IDSA "evidence-based" guidelines is known to state that the persistent symptoms Lyme patients complain of are:
“more related to the aches and pains of daily living rather than to either Lyme disease or a tickborne coinfection”
[often quote from this study of which I only have access to the abstract.]
That is, he doesn't believe in Chronic Lyme or Persistent Lyme. Yet, he is involved in a study of patients with persistent symptoms. One which concludes that:
The results provide evidence for the existence of a differential immune system response in PLS...
Did they just say that they have discovered evidence that something physiological may indeed be happening to those "patients who report debilitating chronic symptoms of pain, fatigue, and cognitive deficits despite recommended courses of antibiotic treatment."? Note how patients only report symptoms. They aren't affirmed to actually have the symptoms. Still, did we just cross a threshold?
I don't know why Wormser and his associates have always been so willing to assume that so many patients must psychosomatic just because they haven't figured out what is going on. Seems to me they should be studying that psychosomatic epidemic, if they really believe there is no physiological basis for these patient complaints. Why are so many people having exactly the same form of psychological disorder? Doh. I digress again....
Anyway, I don't presume to know what goes through Wormser et al's heads. (That's a mystery for a different investigative team.) Is it possible, though, that this study could shift some perceptions? Why is it that "Anti-neural antibody reactivity was found to be significantly higher" in these "post-Lyme" patients? Can we stop arguing about whether something real is happening now and start focusing on how we can stop it?
Back to my doctor. We decided a while ago, based on all the ongoing damage to both my peripheral and central nervous systems, that whatever is going on in me is well beyond the purview of antibiotics. He has believed for a while that there is an auto-immune dysfunction. So, last summer I was started on intravenous immunoglobulin (IvIg). Six months into the treatment, I had some of the neurology tests redone and demonstrative improvements were recorded for the first time in over 5 years. (For the first time in years, my foot responded with an achilles reflex, for instance.) I went to a doctor in 2005 and not until 2010 are some of my symptoms being improved. My doctor has been trying this approach with some of his Lyme patients for a couple of years now. He had presented his clinical evidence to the American Academy of Neurology. He handed me this abstract because, for him, it was supporting his theory about what can happen to some Lyme patients, particularly those who go too long untreated and/or have presented with neuroborreliosis. He has had a difficult time talking to the medical community because of the ongoing denial that patients with persistent symptoms actually have a physiological condition to address. Will that start to change now?
These debates in the medical community, they aren't simply esoteric. Insurance companies now control the dispensation of medicine here in the United States. They are allowed to override what your doctor recommends. That is, they determine your diagnosis and treatment without ever having seen you. Because the primary motive of an insurance company is to make money, they will latch on to any research or expert opinion which justifies the lowest expenditure possible to provide you your the health care they are obligated to provide. In the case of patients with Lyme disease, if you can't afford the doctor and the tests and the treatments yourself, you are limited to one month of antibiotics. I'm "lucky" that my docs pursued my neurological symptoms and documented enough to justify the other diagnoses. Without that, if I "only" had Lyme, I would never be covered for any more medical care because the dear Dr. Wormser, along with his posse, has provided them with legal cover for denying me. I would be even more disabled than I currently am. I wouldn't even be able to write this.
So, when these "debates" occur, we all need to be aware that they have very tangible impacts on the lives of people. And right now, the most likely impact is that they will serve to deny people care because that serves the bottom line. Perhaps we ought to be a little more circumspect about declaring patients' conditions as psychosomatic when we really don't know what is going on? One would think that history would have taught us that "doctors can't figure it out" doesn't equal "nothing to see here."
Is it possible that this study might help us get back to open consideration of what's happening to patients when it comes to Lyme Disease?
ALSO FROM THE 2011 LYME DISEASE AWARENESS SERIES:
Welcome to Lyme Disease Awareness Month
The Mysterious Case of the Shape Shifting Spirochete
Researchers on Persistence In Lyme Disease
This is Your Brain On Lyme
What Do Lyme Disease and Syphilis Have in Common?
Lyme Disease Rant: The Wall of Polarization