Redefining Lyme : My Story

Redefining Lyme
My Story

See Updates, Discussion, and More to see what I've been up to since first completing this essay....

July, 2007

I sit, frustrated and tired, looking over page after page of studies published in various medical journals. I have formed some strong opinions over the past couple of years, most of them regarding the many doctors who have, either by honest mistake or selfish agenda, allowed Lyme disease to become the highly politicized, under-diagnosed, under- and over-treated monstrosity that it now is. Like many others, I have been to Hell and back because of my illness. I have seen a number of doctors, each seeming to have a different opinion on how to interpret my blood tests and what might be the cause to my numerous continued visible and subjective symptoms ... but which of them, if any, is right?

If you asked me what I knew about Lyme disease two and a half years ago, I would have had very little to say about it. Most people know that Lyme disease is spread by certain kinds of ticks, and that a good portion of infected tick bites produce an erythema migrans (EM), or bull’s eye, rash. I found, however, that most people have far too vague an understanding of what Lyme disease actually does to a person’s body when not immediately treated, so I must offer a brief description of the most commonly experienced complaints: after the bull’s eye rash disappears (4-6 weeks after exposure), the disease frequently begins as an “atypical flu,” often presenting with a stiff neck, headache, sore throat, and fatigue. If not appropriately treated, the disease can progress to a more serious and debilitating stage of the disease that is not only more difficult to treat but can cause serious cognitive impairment, psychiatric problems, joint pain and swelling, chronic fatigue, and a host of other symptoms [1].

What is most troubling, however, is that there exists heated battle between two very different camps within the medical community, which ultimately has resulted in the mistreatment and undue suffering of countless individuals. The Infectious Diseases Society of America (IDSA) maintains that Lyme disease is easily diagnosed and easily treated with a short course of antibiotics, with all continuing symptoms the result of a self-resolving “post-Lyme syndrome” [2], whereas the International Lyme and Associated Diseases Society (ILADS) asserts that Lyme is grossly under-diagnosed and can take years of antibiotic therapy to treat, often manifesting itself as “chronic Lyme,” a difficult, if not impossible to treat, form of the disease [3]. Both have published guidelines on how to diagnose and treat Lyme and other tick-borne diseases, and both vehemently denounce the views and practices of their opposing camp. Meanwhile, countless of patients continue to suffer in the crossfire.

Unwilling to accept the uncertainty created by the two camps’ inability to agree on anything, I began to read random medical journals, determined to find some answers. I read both camps’ most current guidelines on Lyme disease diagnoses and treatment. I read as many newspaper articles and case studies from peer-reviewed journals as I could get my hands on. I collected anecdotal feedback from numerous other Lyme disease sufferers. After sifting through thousands of pages of text, I concluded that both sides give a decent argument and collectively they contain a good deal of viable information. However, both also contain serious flaws that do need to be addressed.

The IDSA's guidelines on Lyme disease diagnosis and treatment have, according to the ILADS group, f[allen] short of meeting the needs for diagnosis and treatment of individuals with chronic Lyme disease [4]. A huge contributor to this is the IDSA’s inappropriate use of guidelines set by the Centers for Disease Control (CDC) in 1990, which were created specifically to create uniformity in the reporting and tracking of the disease [5]. The CDC is very specific to note that “this surveillance case definition was developed for national reporting of Lyme disease; it is not intended to be used in clinical diagnosis” (emphasis added). However, said definition is reflected directly in both the IDSA’s past and present diagnostic guidelines, being used specifically in clinical diagnosis. As a result, the CDC estimates that up to two hundred thousand cases of Lyme disease continue to go undiagnosed [6].

Considering the large number of undiagnosed cases of Lyme disease just in the United States, it is crucial to note the importance of early diagnosis and treatment. Regardless of the cause behind the long-lasting symptoms of many “post” or “chronic” Lyme sufferers, there is a well documented correlation between delayed treatment and chronic disease, as Dr. Daniel Cameron explains: “Lyme disease presents formidable challenges because of the high percentage of cases that become chronic in the absence of early treatment” [7]. Had the doctor I saw about a month after my tick bite known that my “Flu,” stiff neck, body aches, and various rashes were enough at the time to merit treatment, for example, I might have been saved years of suffering. Had the IDSA guidelines my doctor followed back then been more specific about the fact that Lyme disease exists outside of the Northeast, or that Ixodes pacifica can also transmit the disease (information added to the guidelines’ 2006 update [1]), perhaps I would not be here right now, without a job, desperately searching for my health. Unfortunately, by the time I actually received treatment, six months had gone by.

My health visibly deteriorating, I finally was able to talk my general practitioner, Dr. Amy S., into ordering a Lyme disease blood test. When the Quest Diagnostics ELISA titer, the initial screen for Lyme, came back positive, she reluctantly prescribed a course of doxycycline. However, when the “confirmatory” Western blot blood test came back negative, she told me that I did not have Lyme disease, but I could take the course of doxycycline “just in case.” After experiencing a Jarisch-Herxheimer reaction a day or two into treatment (fever, chills, and intense body aches that occur when starting treatment for a spirochetal illness [8]) I slowly began to feel better. Many of my symptoms continued throughout my antibiotic treatment, however, and within a month of finishing the course I was so sick that I was once again having a hard time making it to work. I took Medical Leave off and on, but it would only be a matter of time before I had no choice but to quit my job. I was desperate for more antibiotics, knowing that I was at least semi-functional while I was on the doxycycline. I hoped that continued treatment might ease the pain, fatigue, and cognitive problems that were beginning to destroy everything that was left of my life, but I couldn’t find anyone willing to prescribe me another course.

I went to see Dr. Brian L., one of the top infectious diseases specialists in Nevada. After looking over my blood work, a photograph of my original rash, and my list of complaints, Dr. L. explained to me and my husband in a most hostile manner that there was no way I had Lyme disease, now or ever, as “there is no Lyme disease in Nevada.” I later found through the CDC that Lyme disease does indeed exist in Nevada, right where I live, albeit rare [9]. Once again I questioned the positive ELISA titer, and Dr. L. agreed with Dr. S. that my negative Western blot was more significant. I questioned the bull’s eye rash I found a few days after the bite. He said that, being the size of a quarter at its largest, my bull’s eye was too small to be diagnostic; what I had was probably nothing more than a spider bite. The tick, he suggested, was a red herring, or perhaps I didn’t know my bugs as well as I thought I did and what I found on me hadn’t been a tick at all. Other blood tests indicated that I was more likely developing lupus, or perhaps I had some type of viral infection that simply needed to run its course. When I asked him if my illness might possibly have been complicated by another, co-infecting tick-borne disease (as I am adamant that I know what an Ixodes tick looks like) he very confidently said no, and he flat out refused my appeal for more blood tests. I found out about six months later, however, through another series of blood tests ordered by a different doctor, that I was infected with a strain of babesia, a close cousin to malaria that causes severe bouts of weakness and fever, and is also transmitted via ticks. Still, even if Dr. L. had gone ahead and ordered the co-infection tests when I requested them, his treatment of my negative Western blot was still potentially problematic.

The IDSA has long required a two-tier process for the testing of Lyme disease, using first an ELISA titer and then a Western blot to confirm diagnosis. The first test is used for its supposed sensitivity and the second for its specificity. If both tests are interpreted as positive, then the patient can be diagnosed and treated. While this practice would seem simple enough, it is actually highly defective. According to ILADS guidelines, the process required by the IDSA is so flawed that it fails to detect up to 90% of cases. The IDSA even notes in its 2000 guidelines that “serological assays for Lyme disease have substantial limitations” [10]. Coyle et al. state, “many of the commercially available assays [for Lyme disease] have been plagued by a lack of sensitivity, specificity, and reproducibility” [11]. My own blood tests are a great example of those findings, especially when one adds the results to blood tests I had done about a year later, a C6 peptide ELISA, which is supposedly more accurate than the regular ELISA titer, and repeat Western blot. In those tests, interestingly enough, the ELISA came back negative, but the Western blot came back positive.

So why, to this day, is so much credence given to the reliability these tests? Why is it that almost all physicians in the United States are still under the misguided impression that these two tests are the diagnostic end-all be-all to ruling out Lyme disease? Note that the IDSA is very specific to comment that “serological assays for Lyme disease have substantial limitations.” Still, a clear positive result in both tests is required for a diagnosis, when the patient does not present with a diagnostic bull’s eye rash, and discrepancies between ELISA and Western blot results often are interpreted as an immediate negative for Lyme disease. Tom Grier of the Canadian Lyme foundation points out of this accepted practice:

A misconception about Western Blots and ELISA tests is that they have as many false positives as false negatives. This is not true. False positives are rare. Negative serologies despite a rash or positive culture is routine. ... when the ELISA or Western Blot tests are positive, they are significant [12].

Patients who suffer from varicella‐zoster virus, Epstein‐Barr virus, cytomegalovirus[13], rheumatologic diseases, rickettsia, or ehrlichia,[14] can all produce false-positive Lyme titers, and considering the crossover in symptoms between many of these diseases, misdiagnosis does occur. I considered these facts when trying to piece together what was and was not significant in my own various blood tests. Considering the borderline-positive tests I had indicating possible lupus, one can’t discount the possibility that I have been developing an autoimmune disease, although a repeat test I took six months after the first did come back completely negative for lupus. Barring these other diseases, the process of elimination began to lead back to Lyme disease. Why Drs. S. and L. refused to dig any deeper and help me get to the bottom of my illness, I can only speculate. Perhaps my untreated disease had made me a little too disgruntled and unhinged for their tastes, but unfortunately Lyme does tend to have that effect on people. Seemingly with nowhere else to turn, I had no choice but to research the different tests on my own, learning how they worked and how they were interpreted. Looking back over my tests, I find my missed diagnosis to be quite disturbing.

Yet another problem I found with the two-tiered testing system for Lyme disease are the vaguely numerous different ways one can interpret the Western Blot, which is determined by the number of diagnostic bands counted in the completed test strip. ILADS guidelines state:

The CDC considers a western blot positive if at least 5 of 10 IgG bands or 2 of 3 IgM bands are positive. However, other definitions for western blot confirmation have been proposed to increase sensitivity. In fact, several studies showed that sensitivity and specificity for both the IgM and IgG western blot range from 92 to 96% when only two specific bands are positive.

Those who agree with this assessment, such as Greer and independent laboratory Igenex, point out that certain bands, such as 31kDa, 34kDa, and 39kDa (kDa is a unit of measurement that determines antibody responses to specific proteins found on the bacteria) reflect proteins that virtually exclusive to B. burgdorferi; Igenex claims that 31kDa and 34kDa not only indicate Lyme disease, but that they are actually specific to late stage Lyme disease [15]. The Lyme Disease Association believes that, not only do these bands have said significance, but their absence in commercial Western blots are responsible for a large number of false-negative blood tests [16]. Considering the fact that hundreds of thousands of people sick with Lyme disease have admittedly gone undiagnosed by the CDC, one really must consider the possibility that there does exist some credence to the above claim.

Only one band in my first Western blot IgG (IgG tests for infections that have persisted for longer than a couple of months), 41kDa, which is not specific to Lyme but usually the first to show up [17], came up positive, but in a repeat test four positive bands and one indeterminate band, two of which happened to be bands 31 and 34 kDa, came up positive. Four out of those five bands referred to Lyme-specific proteins, the fifth being a continued positive on band 41kDa. Under CDC criteria, my test is still negative, despite the high number of Lyme-specific bands, as IgG tests with even three or four positive Lyme-specific bands, but lack the required number of positive bands, are still interpreted as negative.

I listened to the infectious diseases doctor, however. I resigned myself to the possibility of having lupus, doing everything I could to manage my pain, dwindling energy levels, and crumbling mental state. I broke out in a multiple erythema migrans rash, at one point having up to three dozen tiny bull’s eyes covering my upper body and face. According to the IDSA’s most current guidelines:

Primary erythema migrans is a round or oval, expanding erythematous skin lesion that develops at the site of deposition of B. Burgdorferi by an Ixodes tick. These skin lesions typically become apparent approximately 7-14 days (range 3-30 days) after the tick has detached or was removed and should be at least 5 cm in largest diameter for a secure diagnosis. ... secondary erythema migrans skin lesions can be <5 cm in largest diameter, but like primary lesions, they may expand.

Unfortunately my initial rash was less than 5 cm in diameter, and none of my secondary lesions ever expanded much larger than the first, so no “primary” lesion could be identified in my case. As a result, not even my multiple bull’s eye rash was enough for a diagnosis, nor was it enough to prove that my infection may have persisted beyond my initial treatment. I initially decided that I was done seeing doctors, unwilling to take any further abuse over my desire for diagnosis and treatment, but after two months of unsightly red rings and spots growing out of control I finally decided to see a dermatologist. A dermatologist, I finally reasoned, could biopsy the rash and tell me, once and for all, what was making me sick. The office could not fit me in for a month, however, and chance would have it that by the time I got in to see the doctor all of the lesions had faded.

Dr. Kenneth La. took one look at my chart, which contained none of my blood tests, took one look at my faded spots, which were barely visible by this point, and then proceeded to tell me that not only were my spots the result of “too hot of showers,” but also that there was no way that either Lyme or lupus could be a contributing factor. I tried to tell him that I was no longer able to take hot showers, as they triggered intense weakness and dizzy spells (I later learned that babesiosis, the co-infection complicating my Lyme disease, was likely the cause to those symptoms). Dr. La. pursed together my lips with his fingers and thumb, hushing me as if he were attempting to sooth a screaming child, not allowing me to speak more than a word of two. I tried to ask him for a biopsy, but again his fingers went to my lips and he hushed me with a slow, rhythmic, “shh-shh-shhh!” It was then when I realized that I was sitting alone with this man, wearing nothing but a paper shirt and sheet, and he was belittling and blowing off what he perceived to be a ranting hypochondriac. I went silent, feeling humiliated and dumbfounded.

Lyme specialist Robert Bransfield, M.D. notes: “years of failure to recognize, diagnose, and adequately treat [Lyme patients] has led to an ever expanding epidemic of chronic Lyme disease” [18]. He states that, because of current diagnostic issues, many Lyme disease patients, who are legitimately suffering both physically and mentally from a very real infection, are not only not receiving the treatment that they need, but are also suffering the stigma and humiliation of being written off as “hypochondriacal” or “crazy.” I can’t help but wonder how many other people have fallen victim to late stage Lyme disease, simply because their doctors were too quick to dismiss their symptoms. I have to wonder how many late-stage Lyme patients are mistreated or brushed off by their trusted family physicians once they begin to suffer the numerous neurological and psychological effects of their disease.   Moreover, I have to wonder how many changes might need to take place in the IDSA’s current guidelines to ensure that future patients do not continue to slip through the cracks.

The two most significant problems with the IDSA’s current guidelines are its unduly conservative diagnostic requirements and its equally conservative recommendations on when and how long to administer antibiotics. While the IDSA recommends a maximum of twenty-eight days for any and all manifestations of Lyme disease, stating "to date, there are no convincing published data that repeated or prolonged courses of either oral or iv antimicrobial therapy are effective for [chronically ill] patients," the text then slightly varies from this stance by stating, "response to treatment is usually slow and may be incomplete. However, unless relapse is shown by reliable objective measures, repeat treatment is not recommended." So first the IDSA does not recommend long-term or repeated therapy at all, but then states that it is acceptable only if "relapse is shown by reliable objective measures." The guidelines do nothing to explain what falls under the definition of reliable objective measures, however, and so once again the physician is left to assume to the best of his or her ability what diagnostic restrictions this leaves him or her to work with.

My illness progressed to the point where I was either in bed or lying on the sofa most of the time, overwhelmed with fatigue. My knees took turns swelling up on me, causing varying degrees of pain. My neck went stiff on a regular basis, often seizing up as if I had whiplash or meningitis, and with that usually also came excruciating “marathon” headaches that would last for up to a week at a time. I became easily confused, and found it difficult to piece together even the most simple of sentences. Sometimes I sounded like I was drunk when I talked, barely able to mumble out my words. I became hit with regular bouts of nausea and vomiting, sometimes unable to keep even water down for days at a time. I was plagued with drenching night sweats. I became agoraphobic, depressed, and easily agitated. There were times when I felt as though I could take no more, and I struggled with crushing suicidal ideations. I became so desperate for relief that I turned to the Internet. I obtained the name and telephone number of a highly recommended “Lyme Literate” MD (LLMD) in California and, crossing my fingers, I made an appointment.

Dr. Steven H. had his Northern California office set up at Igenex laboratories at the time, in beautiful Palo Alto. My husband and I walked into the front office, which consisted of a young woman with a stack of clipboards and files in disarray, sitting at a folding card table. I received a small stack of paperwork to fill out and sign, and among the paperwork was a waiver stating that I would not sue the doctor for malpractice, should my treatment somehow go wrong.   Dr. H. also did not accept health insurance, requiring his patients to sign another paper agreeing to pay the five hundred-dollar fee in full at the time of the appointment. I should have seen the red flags for what they were right then and there, but at the time it just didn’t seem that important. Desperate for antibiotics, I signed the waivers and filled out all of the required paperwork.

Dr. H. spent about forty-five minutes with me, looking over my blood work, asking me Lyme-specific questions, and giving me a short physical exam. Part of the exam consisted of me walking, heel-to-toe, with my eyes closed and my arms at my sides. As I began to wobble he nudged me back into balance, and then told me very confidently that I had “Lymie balance.” I was impressed. I felt hopeful. He really seemed to know his stuff. Perhaps he might actually be able to help me, I thought. My husband later told me that no one could have passed that test; from what he saw I had been taken in by something akin to a carnival trick. Dr. H. had given me only about an inch of sway on either side with his arms, nudging me at even the slightest attempt to maintain my balance. We recreated the test at home, and it turned out that my physically fit husband had Lymie balance, as well, as did every other person we tried the test on.

During our visit, however, I was still personally convinced that Dr. H. was my savior until he got around to addressing the treatment of my babesiosis. He explained to me that the particular strain I had, WA-1, was exceptionally difficult to treat, and I would likely need to take at least ten months of the very potent drug Mepron, in combination with azithromycin, if I wanted to ensure the parasite’s eradication. I was to take the Mepron for at least two months after my symptoms subsided, he explained, not telling me that the side effects to Mepron also just happened to be identical to a number of babesia symptoms. Only after I was certain the babesia was gone would he be able to begin treating my Lyme disease, he continued, telling me that I was looking at another year and a half to two years of treatment after I finished the Mepron. In the meanwhile, I would need to set up telephone consultations every three months and office visits every six. When my husband questioned the treatment length for each disease, the doctor became very short and defensive. I wasn’t sure what to think.

When we left I felt confused and unsure of the visit, but what mattered most was the fact that I had my antibiotic prescriptions in hand. I wasn’t sure what to think of all that Dr. H. had told me, although my husband had plenty to say. We went online and accessed a few medical journals. It seemed that ILADS was in conflict with the medical consensus over the treatment of babesia and other co-infections, as well as the treatment of Lyme. While all the peer-reviewed materials I found agree that most co-infections, including babesiosis and bartonella, can be treated with short courses of various medications, many of them actually being self-limiting without antibiotic treatment [19, 20], the “Lyme-literate” community insists upon much longer courses of treatment for most co-infections [21].

It seems to me that many doctors might be using the fact that Lyme can often take several courses of antibiotics to treat, and simply imposing that property on other tick-borne infections. I must question the by-proxy rationale being applied here: just because these diseases are all contracted through the same vector, what are the odds that they all exhibit the same properties when it comes to Lyme’s stealth behaviors and testing inaccuracies? What are the odds of every tick-borne illness requiring long-term treatment, when according to authorities like the World Health Organization and the National Institutes of Health, only a handful of illnesses, such as certain strains of tuberculosis, leprosy, and Q fever, actually merit the use of long-term antibiotics? [22, 23, 24].

I went against Dr. H.’s advice and instead took the Mepron/azithromycin for only twenty-one days. The side effects were horrendous, causing constant nausea, headaches, hot flashes, heavy sweats, and intensified insomnia, but I completed the course. I still felt terribly ill when I stopped taking the Mepron, but I began to feel better within a few days of finishing it. I continued taking the azithromycin, combined with plaquenil, and felt a dramatic decrease in symptoms within the following month, although I did hit somewhat of a plateau with my Lyme treatment shortly thereafter. It has been over three months now since I stopped treatment for babesia, however, and the night sweats, hot flashes, and air hunger have yet to return. While it is possible that some people require more than one course of Mepron for their babesia infection, I now strongly feel that those being prescribed anything beyond a repeat course of Mepron might very well be grossly over-treated for the parasite.

I began to question more than just my babesia treatment when I discovered, via Internet support groups, that people were being fed information from their various LLMDs that I just couldn’t find support for anywhere. Even the most current guidelines followed by many LLMDs, written by Dr. Joseph B. Jr., cites not one reference for any of the many claims listed within its thirty-three pages of text. Dr. B.’s approach to the diagnosis and treatment of tick-borne diseases varies significantly from the IDSA’s, but he offers no peer-reviewed studies, no journal publications, nor one work cited to back it up. Still, no one caught up in the hype takes the time to question any of this, too desperate for a cure even to consider the possibility that many LLMDs may be no better suited to treat Lyme than any other doctor out there. Most of the people I have talked to, often seronegative and clinically diagnosed, are more than happy to treat a number of co-infections for several months, sometimes years, simply because Dr. B. implies that it might be necessary. I have seen people take Mepron for six months at a time or longer to treat Babesia, and others take doxycycline for six months to treat bartonella. Some of these people are terribly ill, claiming to suffer for several weeks straight of mind numbing toxic reactions from bacterial and protozoal die-off ... but after being on such potent antimicrobial treatment for so long, who can say how long into the treatment the patient’s symptoms end and when the side effects to the medications actually begin?

One has to question whether some of these patients are even suffering from Lyme disease at all, and what percentage of those people being treated actually suffer from other undiagnosed illnesses, depression, and hypochondriasis. While far too many people who legitimately have Lyme disease are being misdiagnosed and under-treated, one cannot discount the possibility that least a small portion of people diagnosed solely on a clinical basis might be receiving long-term antibiotic treatment, sometimes through intravenous infusion, and not even be infected. I have spoken to a number of people who have been clinically diagnosed, but never had a bull’s eye, never had a single positive blood test, and present with a number of vague symptoms that could indicate any number of different ailments. Some of them are told they are simply "atypical" patients. Many of these people may truly have Lyme disease, but many of them could also be spending tens of thousands of dollars to obtain treatment that is of no real benefit to them.

A good portion of people who are getting diagnosed based on blood tests are doing so through Igenex laboratories. The main laboratory used in the LLMD community, Igenex, claims to have a lower rate of false-negative results when compared to LabCorp and Quest Diagnostics, returning about three times the number of positive Lyme Western blots [25]. Igenex is a legitimate laboratory and hasn’t had any compliance issues for a few years; however, not only has it been on the Office of the Inspector General’s list of noncompliant labs and had to pay fines in the past, but it also poses a possible conflict of interest in the number of LLMDs who have financial ties to the company [26]. My negative C6 peptide ELISA and positive Western blot were both performed through Igenex. The way I see it, regardless of my health status, both Quest and Igenex each had one hit and one miss with my blood, and with opposing tests, and that leaves me questioning the accuracy of all of them.

More concerning, however, are the practices of some LLMDs across the country. For example, Dr. E. of New Jersey uses “Applied Kinesiology” to determine which antibiotics to prescribe her patients. By having her patients hold different plastic vials filled with various pills, she claims she can tell which of the medications are appropriate to prescribe simply by the muscle resistence presented when holding the appropriate medications [26]. Dr. Raphael St. of California worked at a penis enlargement clinic before setting up shop as a LLMD and also advertises himself as a specialist in weight loss [25]. A handful of doctors have had their licenses suspended for having financial interests in the home infusion companies they referred their patients to, some of whom wittingly misdiagnosed countless healthy people with Lyme disease just to get them on IV antibiotics [25]. Some doctors are selling their own herbal supplements, claiming they do so solely in the name of product purity [26].

There also exist a number of practitioners who claim to have devised long-term herbal “protocols” that possess the same or better treatment value compared to antibiotic therapy. Peddling concoctions and herbs over the Internet, offering pages of testimonials in place of any real scientific research, these doctors not only charge their patients large sums of money each month for their many products, but they also have gained a good amount of business among even many of the more traditional LLMDs. It is not unheard of for a Lyme patient to be put on Dr. Z.’s protocol (www.sinomedresearch.com [27]), Dr. J.’s protocol (www.jnutra.net/ [28]), or the C. protocol (www.bionatus.com [29]).   All of these “protocols” are combinations of different herbs taken with or in place of antibiotics.

Dr. H. suggested I try the C. protocol during a ninety-dollar, fifteen-minute “telephone consult” a couple of months ago. I found that many of the herbs suggested were virtually inaccessible anywhere other than the website Dr. H. gave me. I would have had to spend several hundred dollars a month in order to follow the protocol completely, and even the few herbs Dr. H. said I “could get by with” would have been enough to put me in the poor house. That was the last time I spoke with Dr. H.

The fear of what might happen once I go off antibiotics has been enough, I must admit, for me to explore a few other alternatives. A friend sent me a bottle of one of Jernigan’s neurological detox products, claiming it did wonders for her, and I gave it a “good try.” It didn’t seem to do much of anything for me, other than make me a little nauseous, and I have to wonder if perhaps other variables might have played into my friend’s individual recovery: she had been on doxycycline for a year before she began Jernigan’s protocol, and she could very well have suffered self-limiting post-Lyme sequelae throughout her treatment with the protocol, which she attributed to the eventual cessation of her symptoms; she could have gone into remission due to the many other lifestyle changes she made when she started taking the products; her recovery might possibly have been brought about by some other unknown factor. I do not believe that all alternative therapies are without merit, but my gut tells me that the majority of the above mentioned doctors, if not all of them, may very well be opportunists, taking advantage of sick people desperate for relief from their various symptoms.

What is scary is that many Lyme sufferers willingly cling to these people, assuming that just because the IDSA might be responsible for their misdiagnosis or inappropriate treatment, denying any responsibility for their chronically ill state, a "LLMD," someone belonging to the IDSA’s rival camp, will be better equipped to treat them. This may be true in many cases, and it may also be true that many people are benefitting from the long-term antibiotics and protocols these people are prescribing. That does not mean, however, that every doctor claiming to be Lyme literate runs a legitimate practice, nor does that mean that long term therapy is warranted in every instance.

Lyme disease can be difficult to treat, given its defense capabilities, and even the IDSA agrees that first and second courses of antibiotics don’t always clear the infection. One reason the spirochete is so difficult to eradicate is because of its ability to change form and go dormant. Microbiologists Øystein and Sverr-Henning Brorson explain:

B. burgdorferi has the ability to make cystic forms both in vivo and in vitro, e.g. when exposed to antibiotics commonly used for treating Lyme borreliosis. This phenomenon, combined with the ability of the cysts to reconvert to normal mobile spirochetes, may explain a reactivation of the disease after an illusory cure - and not a post Lyme syndrome as postulated by other researchers [30].

The IDSA's current response to this theory is that the 'cystic' forms of B. burgdorferi that have been seen under certain growth conditions have not been shown to have any clinical significance. The guideline's authors appear hesitant to address this idea at all, quoting the word cystic as if it were a novel concept, despite the fact that researchers have known about the spirochete's defensive capabilities throughout the better part of the past century [31]. The IDSA also claims that the cysts observed under certain growth conditions have not been shown to have any clinical significance, however, there are no claims that cysts observed under all growth conditions lack clinical significance.

Drs. Brorson and Brorson explain their findings, which illustrate that the cysts do, indeed, have clinical significance, in that B. burgdorferi often goes dormant while in its cystic form: the effectiveness of antibiotics requires active metabolism by the bacteria, and therefore it is likely that cystic forms of B. burgdorferi may be resistant to antibiotic treatment [32]. Drs. Brorson and Brorson add that the cystic form might also explain why Lyme disease tests have such low titer and blood culture reliability [33].

One still must ask: if antibiotic resistant Lyme disease does exist, is long-term antibiotic therapy an eventual cure, or simply a short-term band-aid with few, if any, long-term benefits? The IDSA states a number of sources backing its stance against long-term antibiotic therapy for Lyme disease, although there is currently an investigation being conducted to determine whether or not the studies used were cherry-picked by its authors for effect [34]. There also exist questions regarding the reliability of the Klempner et al. trials, one of the studies used to offer evidence against the effectiveness of long-term antibiotic therapy. Dr. Daniel Cameron explains:

The review argues that the poor treatment response in the Klempner et al. trials may be explained by having selected patients who have undergone delayed treatment or multiple treatments unsuccessfully. The quality of life subjects enrolling in the Klempner et al. trials was worse than the average type II diabetic or patient recovering from a heart attack. ... In other words, [they] may be an example of offering patients “too little, too late.”

ILADS members believe that repeated or prolonged courses of antibiotics might be necessary for some patients to recover, claiming reports show failure rates of 30-62% within 3 years of short-course treatment using antibiotics thought to be effective for Lyme disease.   Oksi et al. report in a study published in Annals of Medicine: “we conclude that the treatment of Lyme borreliosis with appropriate antibiotics for even more than 3 months may not always eradicate the spirochete” [35]. But does that mean that six months is any more effective than three, or that two years is more effective than six months? Of those I have spoken with who have been on long-term antibiotics, the majority of chronic sufferers claim to be “95% better,” regardless of whether they are two months or two years into their treatment. I have talked to people online who have been on antibiotics for over four or more years, claiming relapse every time they happen to try going off. If four years of antibiotics isn’t enough to kill of the infection, might it be safe to assume that the disease, at least in some people, is tertiary? In such cases, how realistic is it for these people to be on antibiotics for the rest of their natural lives? Are there any feasible alternatives? Is it perhaps more realistic for these people to aim for remission rather than an actual cure?

Could there be any other potential way to approach these symptoms? Is there any possibility that ILADS may be just as wrong about post-Lyme disease as the IDSA is about chronic Lyme? Might a different percentage of long-term sufferers actually be suffering the after effects of a past infection, much like the lingering fatigue often experienced in some after overcoming an Epstein-Barr infection? Some research suggests that Borrelia’s outer surface protein A (OspA), which is responsible for a positive band 31 kDa on the Western blot test, can trigger autoimmune responses in those genetically predisposed [36]. Researchers also now know that an active infection is not necessarily required for a patient to be symptomatic. For example, a number of patients reported to have fallen ill with a Lyme-like illness after being inoculated with the LYMErix vaccine. It was later discovered that the OspA protein in itself, which was what LYMErix used as its antigen marker, was enough to cause long-term illness in some patients [36]. So, does a positive result for band 31 kDa represent late stage and chronic Lyme, or an autoimmune reaction to any stage of the infection, perhaps even post-treatment? Might that band actually be excluded from CDC criteria with valid reason, despite its specificity for the disease?

While the potential for serious repercussions exists with long-term antibiotic use in Lyme disease treatment, and long-term antibiotic treatment might not necessarily be the right option in many cases, the denial of diagnosis and adequate treatment of thousands of sick individuals is not the way to go about addressing the problem. Regardless of whether or not the omission of 31 kDa is legitimate, current IDSA Lyme disease diagnostic criteria and laboratory requirements are still unforgivably flawed. Lyme disease patients deserve to have all phases of the disease further researched, so that viable treatment alternatives might be discovered and a cure actually found. It is imperative that legislators and researchers work together to rectify the gross mismanagement of this issue and establish a new set of guidelines that reflects all relevant available data. Just as importantly, further research in test development is absolutely necessary, as is the allocation of funds for the purpose of finding long-term alternatives for both the potential sufferers of persistent and tertiary Lyme, as well as those experiencing the disease’s equally disabling autoimmune sequelae.

I am still tired and I am still frustrated, and with every question I find the answer to, I find myself with a half dozen new problems to solve. For now Lyme disease is simply an enigma, but I am confident that further research will eventually provide the answers we’re all so anxiously waiting for. I don’t know where I’ll go from here, and I’d be lying if I said I was certain or unafraid of the contingencies that lie ahead.

Last week, after four months of taking azithromycin and plaquenil, I developed potentially serious stomach issues and stopped taking the azithromycin. Just one week without the antibiotic, and the pain and fatigue had me in tears. Despite the threat of the stomach issues continuing or turning into something serious, I began taking the azithromycin again last night. I don’t know if the antibiotic treatment will ever rid me of the Lyme, or whatever else might be causing my symptoms, but I do know that I feel notably better today. Unlike when I initially started the azithromycin, I did not experience a Jarisch-Herxheimer reaction upon starting back up. Thank goodness for small favors; maybe it’s a good sign. I know that another couple of months will likely make little difference in my long-term prognosis, but I can always hope.

I will take my prescription for another two months, until the refills have gone empty. If I’m still sick, I know my options will be limited: I can suffer through the symptoms and hope they eventually go away on their own, I can go to a local physician and use my chronic, Lyme-induced sore throat and swollen glands as evidence of a throat infection, obtaining short antibiotic breaks here and there when the pain and neurological problems simply become too much to endure, I can try seeing if a rheumatologist has anything more to offer in terms of symptom control, or I can drive hundreds of miles and pay a potential quack thousands of dollars a year to keep me hooked up.

Tens, possibly even hundreds of thousands of others are currently faced with the same dilemma, many of whom are willing to go to great lengths to obtain open-ended antibiotic treatment. I don’t like the idea of being on antibiotics for years on end, but I can’t stand the idea of being sick for the rest of my life, either. The prospects are scary, and I wish that there existed a few more alternatives. If only Lyme awareness were at a place where, if patients truly needed multiple courses of antibiotics, they could see a family practitioner about it without fear of some type of communication breakdown or insurance denial. If only testing for Lyme disease were more accurate and there existed a reliable test for active infection. If only there existed some way of dissolving the continued debate over this insidious, life-altering disease, with researchers from both camps focusing their efforts on new findings rather than debating variables that, as of present, neither has the research to substantiate. Until the Lyme community can clear this hurdle, people will continue to get misdiagnosed by the thousands, and the dangerous practices used in attempt to rid these people of their subsequent persistent symptoms will continue as well.

Consider the following scenario: you’re barely able to get out of bed most of the time, but you hardly ever sleep; one body part or another is always in some degree of pain and/or swelling, and when the pain gets bad, it gets really bad; you can’t work, you’re losing weight, and you’re losing your mind ... what would you be willing to do for a chance at getting your life back?

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Last edited: 12/2007
Home page last updated: 7/2007

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Disclaimer: The views contained in this site are a matter of personal opinion and are not intended to be used as medical advice. Where possible, doctors’ names have been obscured; this has been done out of respect for their privacy, although the author might not respect or condone their individual practices. The author encourages those who have read this essay to seek out their own answers, via peer-reviewed material, and not to take for granted any advice or viewpoint, no matter who it comes from, as unquestioned fact.

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