Thursday, December 30, 2010

0 Dr. David Volkman's letter to the IDSA Lyme Disease Guidelines Panel

Here is a copy of Dr. David Volkman's letter to the IDSA Lyme Disease Guidelines Panel, sent to them prior to the 2009 IDSA Guidelines review called for by A.G. Blumenthal. 

If you've never read the entire thing, I highly recommend that you do - whether you are passing through, a Lyme patient, or know someone who is. (I consider this required reading for Chronic Lyme patients.)

Dr. Volkman has courage to say what he thinks is right. Where are the "other Volkmans" out there? This is what we need to know, and hear from them.

Comments: Regarding Lyme disease (LD) treatment recommendations
David Volkman, Ph.D., M.D.
Emeritus Professor of Medicine and Pediatrics
SUNY, Stony Brook, NY

Background: Ph.D. and M.D., Emeritus Professor of Medicine and Pediatrics at SUNY, Stony Brook. Board certified in Immunology, Diagnostic Laboratory Immunology, and Internal Medicine, and Board Eligible in Infectious Diseases. Previously, Senior Investigator at the NIAID and Chairman of both the Internal and External Review Boards of the NIAID. Among first to isolate and clone human antigen-specific T lymphocytes (1,2) and active in retroviral investigations (3,4). Involved in both clinical and bench research in LD since coming to Stony Brook in 1985.

Recommendations from Guidelines Committees ought to be evidenced based, unbiased, and valid, not consensus dictums based on the authoritative opinions of "experts" which should be objectively evaluated and often challenged. Rather than avoid controversy and dissenting views to achieve unanimity the Guidelines should accurately reflect confirmed medical principals and both sides of unresolved questions. Below are some of the issues that need to be addressed in an objective manner.

1. Persistent/chronic borrelia infection
2. Serology-seronegative infection
3. Flawed Prophylaxis recommendation
4. Conflicts of interest
5. Optimal diagnostic and therapeutic modalities-undefined presently
6. Meaning of the "surveillance" definition of Lyme disease

Persistent borrelia infection

Borrelia is a bacterial spirochete capable of avoiding host defenses and causing chronic constitutional, CNS and arthritic symptoms and relapsing fever in humans. The spirochete is a fastidious slow-growing bacterium that often requires sustained doses of antibiotics for its eradication (5, 6). There is abundant evidence of persistent borrelia infection in both humans and mice (5-14).

Contrary to the claims of the IDSA guidelines and its Committee members, chronic borreliosis patients can be either seropositive or seronegative, i.e., individuals with persistent infection have or lack anti-borrelia antibodies (7,8,10-14). After persistent infection borrelia DNA has been isolated from  both CSF and synovium of seronegative individuals by PCR (10-14). In the face of both animal (5,6,9) and human (7,8,10-14) evidence of persistent borreliosis following inadequately treated LD, it is disappointing that Guidelines members continue to dismiss the possibility of persistent borreliosis with unreferenced assertions that it has been “discredited” by “current thinking.” (15,16,17,37).

Since mouse models of persistent borrelia infection exist (5,6,9) it should be straightforward to design an antibiotic regimen that eliminates this infection. However instead of urging the development of better diagnostic tools to identify individuals with previous infections who may still be infected (36) with chronic symptoms, Guidelines members merely assert the unsupported dogma that chronically infected people are all seropositive. This claim is simply untrue (7,8,10-14). Some of these committee members have testified as “expert witnesses” for insurance companies attempting to deny health benefits to chronically symptomatic individuals and written articles disputing its existence (17). IDSA committee members deny the possibility of persistent seronegative Lyme disease (15-19).

In addition to available in vivo animal models to investigate optimal therapy, the there are well established in vitro borrelia culture media. If borrelia is briefly exposed to one of many antibiotics in vitro in BSK II medium, the fastidious slow-growing bacteria will often stop growing reverting to a cystic form. They only resume proliferation weeks after the antibiotics are removed and optimal growing conditions are restored (20).

Despite Drs. Burgdorfer and Barbour having pioneered the isolation and growth of B. burgdorferi at the CDC, much of the current work on persistent borreliosis is being done in Europe as American work in humans may have been suppressed by prevailing dogma (21). Instead of fostering research on the optimal antibiotic regimen to eradicate persistent borreliosis in in vitro, animal, and human models, committee members have stifled investigation by their obdurate insistence that persistent borreliosis does not exist (15-19,22). It remains unclear what combination of antibiotics and sustained treatment will eliminate a carrier state and minimize morbidity.

The IDSA’s Committee should be a strong proponent of this sort of research rather than an obstacle.

Seronegative Borreliosis (SNB) 

Removing the bulk of a bacterial inoculum before a mature immune response can develop may leave an infected individual without enough bacterial antigens for T-B cell cognate recognition. Cognate T-B cell recognition requires B cells to bind available borrelia, digest, and re-express them on their surface in the context of MHC II selfmolecules. T cells then recognize the antigen-MHC complex, activate, and deliver potent maturation and growth cytokines. Antibiotics impede the rapid expansion of a bacterial inoculum and leave insufficient antigen to bind to B cells and promote a humeralantibody responses (38).

In our original report (7) we described a group of 17 patients who all suffered from either neurological or arthritic signs frequently attributed to chronic borrelia infection. These individuals lived in areas endemic for Lyme disease, all had had a pathognomonic erythema migrans (EM) rash, all had a course of antibiotics (tetracycline, erythromycin, or an abbreviated course of another antibiotic) early in their illness, all had T cell blastogenic responses consistent with exposure to borrelia, and curiously, all lacked detectable antibodies against borrelia. Although early antibiotic treatment abrogated antibody responses, it did not eradicate infection. When retreated, most of these chronic patients markedly improved within a month of completing a course of intravenous ceftriaxone, consistent with their problems being due to persistent, ongoing occult infection; although borrelia was not isolated in most cases (PCR was not yet widely available). SNB was subsequently confirmed in other laboratories which detected borrelia DNA by PCR in the cerebral spinal fluid (CSF) and synovial tissue or fluid of seronegative patients with chronic neurologic or arthritic signs and/or symptoms (10-14).

These and similar observations led to recommendations by some authorities for antibiotic retreatment of patients with documented persistent ongoing neurological symptoms (24).

Along similar lines, established borrelia infections in mice seem to concentrate in collagen rich tissue and are difficult to eradication (9) even with repeated parenteral antibiotics. In addition to the initial data documenting T-B cell dissociation (7), SNB was confirmed by many investigators both here and abroad who isolated B. burgdorferi (Bb) by culture or by PCR from seronegative individuals (10-14,25). Steere’s lab also confirmed that about 5% of chronic Lyme arthritis patients with PCR+ Bb DNA in their synovium were seronegative (14). Thus, there are many peer-reviewed, published “scientific” reports of SNB.

SNB was also demonstrated by investigators who showed that a single dose of oral doxycycline, a therapy that results in 80% of mice thus treated having persistent infection (5), left 87% of their human subjects with borrelia infected tick exposure both seronegative and without an EM (26). Follow-up in these patients was limited to 6 weeks so no long-term symptoms or disability was observed as seen in a similar azithromycin study (8). Although some individuals had fever and/or flu-like symptoms, PCR or culture was not used to isolate Bb in treated subjects.

The investigators erroneously equated the blocking of EM with eradication of infecting borrelia. In two other studies Steere’s group confirmed SNB (14,27).

Seronegative patients who had chronic Lyme arthritis or neuroborreliosis and/or PCR+ joint effusions sometimes had positive T cell blastogenesis (in about 5% of symptomatic seronegative patients) confirming our previous findings (7). SNB was also observed in volunteers infected with B. persica causing Rat Bite Relapsing Fever (RBRF) (28). PCR confirmed borrelia DNA in their blood.

These individuals remained seronegative if they received antibiotics within 5 days of infection. The sole individual who was antibody positive did not get antibiotics until day 6. Similarly, individuals receiving azithromycin for B. burgdorferi induced EM remained seronegative despite half developing persistent signs and symptoms of chronic borreliosis (8).

The erroneous insistence that widely disseminated borrelia infection cannot occur in the absence of anti-borrelia antibodies (16,17).

This view, reiterated by the IDSA, leaves seronegative persistently infected symptomatic sufferers without the proper diagnosis, treatment, or credibility to pursue appropriate treatment. The conceit that a yet discovered serological test will detect SNB is wrong headed as in some cases a humeral response is simply blocked. The newer serological tests are no more sensitive and only slightly more specific (29,30) than using sonicated antigen, but have less background nonspecific binding.

SNB (7,23) has been dismissed by members of the Guidelines Committee (16). They have misquoted published data to support single dose prophylaxis and used a single 1991 unreliable report which found 8/12 normal controls Bb blastogenesis positive to dismiss T cell evidence of seronegative infection (confirmed in Steere’s own lab (27)).

Even their admissions that there are no reliable serological tests that detect early Lyme disease or SNB (29,30) are couched in language that obfuscates the lack of certitude in claims that an infected patient is always seropositive (29). A critical letter to Clinical Infectious Diseases, the official organ of the IDSA, regarding this article was rejected less than a day after its submission. The rejected letter summarizing Steere’s errors follows.

To the Editor:

The recent article by Steere (1) and the accompanying editorial by Weinstein (2) reiterate the current status of Lyme disease tests, i.e., there is no serological test that will reliably detect early borrelia infection. There is plentiful evidence from humans and mice that while early but inadequate antibiotic treatment may block seroconversion, it can leave the recipient persistently infected (3,4).

Despite published, confirmatory data, Steere continues to ignore seronegative Lyme disease and claims that seronegative disease has been “discredited” and “that all patients with objective neurologic, cardiac, or joint abnormalities associated with Lyme disease have serologic responses to B. burgdorferi.” (1) In his article these claims are unsupported and unreferenced. The claims are however consistent with Steere’s recent article (5) and the erroneous recommendations of the IDSA sponsored Guidelines Committee (6).

The IDSA’s Committeee has been cited by the Attorney General of Connecticut for its conflicts of interest, its commercial and financial links to purveyors of serological tests, and its links to insurance companies denying antibiotic treatment (7). Seronegative Lyme disease was first reported in 1988 (3), recognized in clinical trials (8), and confirmed by isolating borrelia DNA by PCR in seronegative patients (4,9).

Wormser, the Chairman of the Guidelines Committee, advocated a single dose oral doxycycline treatment for acute tick bites in a Lyme disease endemic environment (10), and this recommendation was codified in the Guideline recommendations (6). A similar single dose oral doxycycline treatment at the time of infection leaves 80% of mice persistently infected with borrelia (11) and persistent infection in mice is often refractory to even parenteral antibiotic treatment (12).

The IDSA has neither retracted nor modified its dangerous recommendation. Yet despite these scientifically published observations, Steere et al obdurately continue to ignore and deny the existence of seronegative Lyme disease and the potential for persistent seronegative infection after a single oral dose of doxycycline, publishing incorrect statements like “there is no scientific evidence the there can be infection without anti-borrelia antibodies” (5) and false and inaccurate claims about murine studies (13). In a settlement the IDSA has agreed to a reassessment of the Guidelines recommendations using an independent arbiter, but as Steere’s article highlights, Committee members have continued to deny seronegative disease and perpetuate misinformation.

Although acute Lyme disease with a pathognomonic rash (erythema migrans) if recognized can be effectively treated almost all the time, the proper treatment of seronegative Lyme disease detected at a chronic stage remains undefined. Early inadequate doxycycline treatment that blocks seroconversion but leaves patients with persistent and difficult to diagnose borreliosis should be eschewed, not recommended by the IDSA. Individuals with possible persistent borreliosis should be carefully evaluated, not dismissed as hypochondriacs.

1. Steere AC, McHugh G, Damle N, Sikand VK. Prospective study of serologic tests for lyme disease. Clin Infect Dis. 2008;47:188-95.
2. Weinstein A. Editorial commentary: laboratory testing for lyme disease: time for a change? Clin Infect Dis. 2008;47:196-7.
3. Dattwyler, R.J., Volkman, D.J., Luft, B.J., Halperin, J.J., Thomas, J., and Golightly,M.G. Seronegative late Lyme borreliosis: Dissociation of Borrelia burgdorferi specific T and B lymphocyte responses following early antibiotic therapy. N Engl J Med, 1988; 319: 1441-1446.
4. Oksi J, Uksila J, Marjamaki M, Nikoskelainen J, Viljanen MK. Antibodies against whole sonicated Borrelia burgdorferi spirochetes, 41-kilodalton flagellin, and P39 protein in patients with PCR- or culture-proven late Lyme borreliosis. J Clin Microbiol 1995; 33(9):2260-4.
5. Feder HM Jr, Johnson BJB, O'Connell S, Shapiro ED, Steere AC, Wormser GP. A Critical Appraisal of “Chronic Lyme Disease” N Engl J Med 357:1422, 2007. and response to letters, 2008;358:428-31..
6. Wormser GP, Nadelman RB, Dattwyler RJ, Dennis DT, Shapiro ED, Steere AC, Rush TJ, Rahn DW, Coyle PK, Persing DH, Fish D, Luft BJ. Practice guidelines for the treatment of Lyme disease. The Infectious Diseases Society of America. Clin Infect Dis. 2000 Suppl 1:1-14.
7. News from Attorney General Blumenthal, May 1, 2008.
8. Luft BJ, et al. Azithromycin compared with amoxicillin in the treatment of erythema migrans. A double-blind, randomized, controlled trial. Ann Intern Med 1996 124:785-91.
9. Keller TL, Halperin JJ, Whitman M. PCR detection of Borrelia burgdorferi DNA in cerebrospinal fluid of Lyme neuroborreliosis patients. Neurology 1992;42(1):32-42.
10. Nadelman RB, Nowakowski J, Fish D, Falco RC, Freeman K, McKenna D, Welch P, Marcus R, Aguero-Rosenfeld ME, Dennis DT, Wormser GP. Prophylaxis with Single-Dose Doxycycline for the Prevention of Lyme Disease after an Ixodes scapularis Tick Bite. N Engl J Med 2001;345:79.
12. Zeidner NS, Massung RF, Dolan MC, Dadey E, Gabitzsch E, Dietrich G, Levin ML. A sustained-release formulation of doxycycline hyclate (Atridox) prevents simultaneous infection of Anaplasma phagocytophilum and Borrelia burgdorferi transmitted by tick bite. J Med Microbiol. 2008;57:463-8.
12. Hodzic E, Feng S, Holden K, Freet KJ, Barthold SW. Persistence of Borrelia burgdorferi following antibiotic treatment in mice. Antimicrob Agents Chemother. 2008;52:1728-36.
13. Wormser GP, Dattwyler RJ, Shapiro ED, Dumler JS, O'Connell S, Radolf JD, Nadelman RB. Single-dose prophylaxis against Lyme disease. Lancet Infect Dis. 2007;7:371-3.

In addition to attacking T cell blastogenic assays which documented previous borrelia exposure in SNB and despite confirmation of SNB by Steere’s group and others (13,27), Committee members have assailed the PCR evidence from several labs that detected borrelia DNA in the CSF or joint effusions of seronegative patients (11,13,14). Feder (17) cited problems with nested primers in disputing PCR evidence. However, as shown below the PCR data was reliable and reproducible.

From Dr. Tracy Keller:

Contamination is indeed a potential problem in the diagnostic application of PCR (though Feder’s citation on this point is a review which in turn cites only an anecdotal report of a single case example of false positive due to contamination).

While meticulous care must be taken to avoid false positives, you have cited examples where this was successfully achieved. In the intervening years since our study, PCR has become well established in many settings as a powerful tool for molecular diagnostics of infectious disease. It is general practice in science to evaluate a study and its conclusions on its own merits.

Feder seems to be negating our conclusions by association with other problematic studies, or flatly accusing us of failing to meet high scientific standards. If Feder has a specific criticism that our study falls short of high scientific standards, he needs to back that up with data.

The general concerns Feder raises regarding false positives and contamination in clinical Lyme diagnostics using PCR are real, but that fails to negate the published literature regarding PCR positive, seronegative disease. Three studies (Keller, Oksi, Pachner (2, 4, 5)) show PCR positive CSF in seronegative patients with clinical findings consistent with LB (only a single example in the Pachner paper, multiple examples in Keller, Oksi). An additional study (Lebech) demonstrated PCR positive skin samples in seronegative erythema migrans patients. All four papers have extensive controls for contamination, in Keller et al amplicons were sequence verified and PCR and samples were analyzed blind and were prepared, aliquotted and coded at a separate institution from the one where PCR was done.

The confirmation of positive PCR with the infectious disease “gold standard” of culture in some seronegative patients makes dismissal of these results on the basis of vague, anecdotal counterexamples, completely unwarranted. Along these lines, Preac-Mursic (6) and Oksi have cultured organism from seronegative patients, including an instance of successful borrelia culture following a multi-week ceftriaxone treatement. This proves the point that, in some instances, organism can survive the most aggressive treatment regimens currently in use and confirms the existence of seronegative Lyme Disease.

The Lyme PCR and culture studies referred to above use highly pre-selected patient populations and relatively small sample sizes, and wide variation in the incidence of seronegative, PCR positive patients. It is therefore difficult to extrapolate from these studies the frequency of seronegative, PCR-positive patients in the general population. This work also does not address the question of the extent to which PCR-positivity predicts responsiveness to antibiotic therapy.

These studies do establish, however, that the phenomenon of Borrelia DNA in seronegative patients does exist.

What proportion of these patients may respond positively to antibiotic therapy, and what type or duration of therapy is optimal, are unanswered questions.

Both further research and standardization of practices to optimize the sensitivity and specificity of LD PCR diagnostics are important to examine as thoroughly as possible the significance of bacterial DNA persistence for the design of treatment studies. Feder’s dismissal of the phenomenon of bacterial persistence in seronegative patients, in spite of multiple diverse lines of confirmatory evidence that it is indeed real, seems designed to discourage rather than promote further investigation in this area.

Additional points:

Steere, an author on the Feder review, confirmed the phenomenon of T-cell proliferation positive, seronegative LD (1). While he does not support its use as a clinical diagnostic tool, his work does validate the phenomenon that LD patients can have a T-cell proliferative response while remaining seronegative.

Klempner et al (3), cited multiple times to support conclusions regarding treatment in the Feder et al review, defines 52 seronegative people with “proven Lyme disease” in his study. While Klempner concludes that the antibiotic protocol he used did not help these people, he explicitly acknowledges that a significant patient population with clinically evident Lyme disease are seronegative.

1. Dressler, F., N. H. Yoshinari, and A. C. Steere. 1991. The T-cell proliferative assay in the diagnosis of Lyme disease. Ann Intern Med 115:533-9.
2. Keller, T. L., J. J. Halperin, and M. Whitman. 1992. PCR detection of Borrelia burgdorferi DNA in cerebrospinal fluid of Lyme neuroborreliosis patients. Neurology 42:32-42.
3. Klempner, M. S., L. T. Hu, J. Evans, C. H. Schmid, G. M. Johnson, R. P. Trevino, D. Norton, L. Levy, D. Wall, J. McCall, M. Kosinski, and A. Weinstein. 2001. Two controlled trials of antibiotic treatment in patients with persistent symptoms and a history of Lyme disease. N Engl J Med 345:85-92.
4. Oksi, J., J. Uksila, M. Marjamaki, J. Nikoskelainen, and M. K. Viljanen. 1995. Antibodies against whole sonicated Borrelia burgdorferi spirochetes, 41-kilodalton flagellin, and P39 protein in patients with PCR- or culture-proven late Lyme borreliosis. J Clin Microbiol 33:2260-4.6
5. Pachner, A. R., and E. Delaney. 1993. The polymerase chain reaction in the diagnosis of Lyme neuroborreliosis. Ann Neurol 34:544-50.
6. Preac-Mursic, V., K. Weber, H. W. Pfister, B. Wilske, B. Gross, A. Baumann, and J. Prokop. 1989. Survival of Borrelia burgdorferi in antibiotically treated patients with Lyme borreliosis. Infection 17:355-9.

Tracy L. Keller, Ph.D.
Department of Developmental Biology
Department of Cell Biology
Harvard Medical School

Prophylaxis Guidelines Recommendation

Based on a flawed tick bite prophylaxis article (26) in which the authors showed that a single oral dose of doxycycline blocked EM and seroconversion in 87% of newly infected patients. They ignored fever, flu-like symptoms, and limited their follow-up to 6 weeks; the investigators erroneously equated the blocking of EM with eradication of the infecting borrelia and declared their prophylaxis 87% effective.

The Guidelines Committee wrongly recommended this unproven single oral doxycycline dose for tick bite prophylaxis. As noted below, an identical treatment was ineffective in mice. The IDSA Guidelines Committee codified this ineffective therapy in its recommendations.

Once established, chronic borrelia infections have proved difficult to cure in mice even with repeated parenteral doses of antibiotics (9). Patients with chronic post infection arthritis or neurological symptoms are labeled as “antibiotic unresponsive.” This diagnosis fails to entertain the possibility that some of these patients are persistently infected as in the murine model.

Prophylactic treatment for tick bites has poor scientific underpinnings and will block seroconversion. The indications for prophylactic treatment proposed by decision analysis (31), i.e., at least 3.6% of ticks infected with borrelia and several other criteria, are so restrictive that few even in endemic areas qualify (32).

The implementation of the inadequate Guidelines prophylaxis treatment recommendation will do more harm than good by leaving patients symptomatic and difficult to diagnose. In murine studies the investigators were so certain that the infected mice would be seropositive as stated by the Guidelines Committee they discarded their sera without testing it. In mice a single dose oral doxycycline dose similar to that recommended for humans results in 57-80% of newly infected mice having persistent infection (5,6). When prophylaxis is indicated, a proven effective sustained dose of an appropriate antibiotic should be given rather than the inadequate single oral dose of doxycycline recommended by Wormser and his Guidelines Committee (15,26).

CDC Surveillance Definition

In the 1980s as the Ixodes ricinus tick vector spread beyond its usual habitat, human borreliosis followed. In order to reliably track the geographically expanding incidence of LD, the CDC tried to derive a case definition that would include only definitive cases and exclude possible ambiguous ones that might or might not be true LD.

Dr. Steere and I were members of the “Committee to Develop a Surveillance Case Definition for Lyme disease” and traveled to Atlanta to write the surveillance definition. We identified a number of Western Blot bands most highly associated with definitive cases of LD and established a minimal number of these that would pick up true cases of Lyme disease but, more importantly, exclude conditions whose etiology was uncertain. The CDC explicitly cautioned against using this restrictive case definition for clinical diagnosis and reiterated this proscription with every re-issuing of its “Surveillance Definition.” It has been a source of frustration and confusion that some in the medical community wrongly insist that a Lyme patient must satisfy CDC criteria (see memo below).

Yes, CDC has always warned against using the surveillance case definition for clinical diagnosis. However, we can not obviously regulate inclusion criteria for Lyme disease studies conducted by other investigators. You will also find that the new 2008 Lyme disease case definition has expanded ability to detect other clinical presentations of Lyme disease, and thus the use of "CDC criteria" may not be as frequent in the future.

Kiersten Kugeler
Centers for Disease Control and Prevention
Division of Vector-Borne Infectious Diseases
Bacterial Diseases Branch
Fort Collins, Colorado


Members of the current IDSA Guidelines Committee for the Treatment of Lyme have been cited by the Connecticut Attorney General (33) for receiving payments from insurance companies as expert witnesses testifying against patient claims for treating chronic Lyme disease. In addition, members received payments for consulting to LD testing companies regarding their accuracy in detecting LD serologically.

The Guidelines Committee has denied the existence of chronic borreliosis and has insisted that all LD patients are seropositive. The Committee’s conflicts of interest violate recommendations for guidelines committees (34). The Chairman also lists ownership of Diaspex, a company that mysteriously states it offers no products or services (35) (I think he may have since sold his company).

New committee members should be free of conflicts that may color their treatment recommendations.

In conclusion, current treatment guidelines ignore persistent borreliosis, SNB, and recommend an ineffective prophylaxis regimen. Moreover, members of the Committee should declare their conflicts of interest and clarify the meaning of the “surveillance definition.” Finally, encouraging improved diagnostic (36) and therapeutic tools should be a major priority of a new Committee. Recommendations should be evidence-based not unsupported opinions of Committee members. Controversies need to be delineated not ignored in the interest of consensus. More credible infectious diseases participation
should be incorporated; individuals need not have expertise in borrelia.


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induction, development, and the role of RpoS. Wien Klin Wochenschr. 2002 31;114:574-
21. Volkman D. Seronegative Lyme disease: denial and dogma. Perspect Biol Med. (in press).
22. Steere AC, McHugh G, Damle N, Sikand VK. Prospective study of serologic tests for
Lyme disease. Clin Infect Dis. 2008;47:188-95.
23. Volkman D. Prophylaxis after tick bites. Lancet Infect Dis. 6:370-1. 2007.
24. ACP. 2004. Lyme disease initiative.
25. Preac-Mursic, V., K. Weber, H. W. Pfister, B. Wilske, B. Gross, A. Baumann, and J.
Prokop. 1989. Survival of Borrelia burgdorferi in antibiotically treated patients with
Lyme borreliosis. Infection 17:355-9.
26. Nadelman RB, Nowakowski J, Fish D, Falco RC, Freeman K, McKenna D, Welch P,
Marcus R, Aguero-Rosenfeld ME, Dennis DT, Wormser GP. Prophylaxis with Single-
Dose Doxycycline for the Prevention of Lyme Disease after an Ixodes scapularis Tick
Bite. N Engl J Med 345:79, 2001.
27. Dressler F, Yoshinari NH, Steere AC. The T-cell proliferative assay in the diagnosis
of Lyme disease.Ann Intern Med. 1991;115:533-9.
28. Hasin T, Davidovitch N, Cohen R, Dagan T, Romem A, Orr N, Klement E, Lubezky
N, Kayouf R, Sela T, Keller N, Derazne E, Halperin T, Yavzori M, Grotto I, Cohen D.
2006. Postexposure treatment with doxycycline for the prevention of tick-borne relapsing
fever. N Engl J Med 355:148–55.
29. Steere AC, McHugh G, Damle N, Sikand VK. Prospective serologic tests for Lyme
disease. CID 2008;47: 188-95.
30. Weinstein A. Editorial commentary: laboratory testing for Lyme disease: time for a
change? Clin Infect Dis. 2008;47:196-7.
31. Magid D, Schwartz B, Craft J, Schwartz JS. Prevention of Lyme disease after tick
bites -- a cost-effectiveness analysis. N Engl J Med 1992;327:534-541.
32. Volkman D.J., Kaell A.T., Bosler E.M., and Benach J.L. Prevention of Lyme disease
after tick bites. N Engl J Med 328: 138, 1993.
33. Blumenthal R. 2008. News from Attorney General Blumenthal, May 1, 2008.
34. Steinbrook R. Guidance for guidelines. N Engl J Med. 2007; 356; 331-4.
35. Wormser GP. Early Lyme disease. N Engl J Med. 2006; 354:2799.
36. Exner MM, Lewinski MA. Isolation and detection of Borrelia burgdorferi DNA from
cerebral spinal fluid, synovial fluid, blood, urine, and ticks using the Roche MagNA
Pure system and real-time PCR. Diagn Microbiol Infect Dis. 2003;46:235-40.
37. Volkman D. Seronegative disease after inadequate therapy in Lyme arthritis:
Comment on the article by Kannian et al. Arthritis Rheum 58:2212, 2008.
38. Delves PJ, Roitt IM. The immune system: First of two parts. N Engl J Med. 2000;

Thanks also goes to Dr. Tracy Keller from Harvard and Kiersten Kugeler for their contributions to this letter.

Seriously, what would happen if people sent this letter to the editorial department of every major newspaper?

What if we could get Dr. Volkman himself to post it? Would it make a difference?
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Wednesday, December 29, 2010

1 Getting the persistence model acknowledged

I was going to write a review on the three-part series on Chronic Lyme Disease written by the Roanoke Times, but on reflection I thought about how much mileage the Tribune has gotten for one poorly written, poorly researched syndicated article. It went from there to various newspapers, to being mentioned in Forbes and science blog, to spin-offs in Andrew Sullivan's column and god-knows-where-else by now.

Seems like lately there's almost an overwhelming wave of press about Chronic Lyme Disease that has been negative, and folks have been speculating that it's some plot by the IDSA and the University of Chicago or something.

I don't know. I really can't prove that. It could just be that the original authors of the Chicago Tribune screed just Googled "medical controversy" or something and Chronic Lyme Disease popped up and they said, "Ooooooh, let's try writing about that", with some girlish glee. I somehow find that more probable than some great newspaper conspiracy.

Anyway, I've been thinking about how it seems like the dominant voice in the media does seem to echo support for the IDSA approach, in an almost Borg-like fashion, and wonder if there is anyone the Chronic Lyme patient community could go to in order to get the word out about the persistence model of Borrelial infection and who their allies can be in educating the public and the media.

Relying on patient anecdotes and patient advocacy groups doesn't seem to be enough here or the right approach, in my opinion. The patient experience is what has gotten slammed, much as I and many others have suffered with it, through it - and some of us - mercifully past it. I keep thinking that getting three ducks lined up in a row are really what's going to help here next: science, medical professionals, and progressive media outlets.

On the first, I've been reflecting back on those IDSA Guideline reviews in July 2009... Remembered that two IDSA members who were originally on the panel ended up not being on them. Remember who? Right - Dr. Sam Donta and Dr. David Volkman.

Dr. Donta is a treating physician now who used to be an IDSA member, and so far as I can tell, now isn't. Dr. Volkman primarily does - or at least did - research on Borrelia, and did some research along with the folks of which so many Chronic Lyme patients seem to use their names in place of swear words... It's kinda like Steere = Voldemort, if you were going to draw from Harry Potter: He Who Shall Not Be Named.

Anyway, Dr. Donta was off the panel, when he could have been a useful voice as he supports the persistence model. Dr. Volkman, from what I could gather, is semi-retired by now or maybe totally retired, and got upset at other IDSA members for falsely citing and quoting his research publications and wrote a statement supporting the persistence model.

So there are two former IDSA members who were off the panel who support a persistence model. And as I quoted yesterday, Dr. Willy Burgdorfer - formerly of the National Institute of Health - also has stated he believes in a persistence model.

Those are three specialists I can think of off the top of my head who were with the IDSA or worked with members.

Okay, so that's not a lot.

But I wonder about this: There are 8,600 members of the IDSA at last count. Of that population - of the portion which is not comprised of the original Lyme Guidelines writers we're talking about here - how many of them believe that persistence in humans is at least possible? Of those, how many of them not only believe but know it is possible? How many of them haven't really paid much attention and focus their efforts elsewhere, too, given there are so many infectious diseases to deal with which get more attention and funding?

I wonder how many actual IDSA members from outside the guidelines panels exist who think persistence is possible -  but they are either quietly biding their time now or waiting for retirement when they'll be more willing to risk their opinions - because by then it won't be professional suicide?

Is anyone else out there who is a member of the IDSA who is retiring soon who is willing to look at the evidence and help push for more research on Borrelia and bring all the persistence data to light for the public and media?

Had Dr. Burgdorfer been interviewed by Good Morning America instead of Under Our Skin, what kind of impact would that have had, had he said the same things then?

Another thing I wonder about is how many microbiologists who are in graduate or doctoral programs have the opportunity to learn about Borrelia and study it in vivo and in vitro... as well as those who have already done research which has proven persistence at the senior academic level? Would the people who have written those oft-cited research papers on persistence the Lyme community keeps referring to actually be allies who could educate the public and media on what is suspected, known, and not known about Borrelia? About coinfections? About the impact they have on mammals when both are present? On humans? There is plenty of research out there already supporting a persistence model - it just needs more exposure and discussion.

Medical professionals... How many internists and primary care physicians are willing to treat their patients with extended courses of antibiotics to treat Lyme Disease? I know of one person whose primary care physician prescribed them four months of doxycycline treatment right after being bit by a tick and discussing their symptoms - including the rash. Granted, not everyone has the rash - but this person got treated early on while waiting for serology (which later turned out to be positive). Surely there are other doctors out there who do this who are using their own clinical judgment?

And nurses? I believe there is an association of nurses who formed a Lyme education group in Oregon because the response to Lyme patients in that state has been lacking... where is it? Ah yes, the Mail Tribune posted about nurses forming a Lyme education group in Rogue Valley, Southern Oregon.

Since the press has been slamming a handful of LLMDs lately and alternative treatments, give them what they will listen to more: mainstream medicine. Through this they will learn that not everyone who is not an LLMD thinks the 2006 guidelines are meant to be followed at all times.

Veterinarians... There's another data pool. If more of them would come forward to talk about their clinical experience with treating pets with Lyme and other coinfections, and talk about how widespread the problem is in their patient population - then maybe we'd have a better picture for epidemiology. After all, the same ticks that bite cats and dogs are the same ones that can bite us.

So there are the professionals in science and in medicine I would be approaching to ally with at this point. I don't think patient groups really can do it on their own, even with bills in every state to protect LLMDs. Having those bills hasn't led more primary care physicians to treat Lyme Disease longer, nor  led to more insurance companies willing to cover care.  But I think a groundswell of mainstream acceptability and research to back it will change the situation, and this requires moving away from identification with the fringes - both real, perceived, and media-sensationalized.

In terms of the media, this requires precision in identifying your audience and working with publications who can educate the public from different approaches while still not losing the intended message: It's about proven science and medical need.

The argument that can be made for the patient in the media is this:

This patient population needs treatment and is not getting it, insurance is denying payment for their treatment and science proves it is necessary; to not treat them would be unconscionable and like letting people die from tuberculosis, syphilis, and HIV just because insurance won't pay for it.

From there, I would have some former IDSA members speak out about it, and include Dr. Burgdorfer, a slew of microbiologists and medical students, mainstream doctors who have treated Lyme Disease anywhere from a bit longer than is standard to much longer, nurses, medical professionals who have come down with Lyme and coinfections themselves who have made the decision to treat themselves, and of course, some veterinarians.

I'd be working towards building a relationship with the best of the progressive press - for example, Utne Reader has posted a short piece about Lyme Disease which was informative and not negative. I'd be looking at popular science magazines, general health columns and magazines, newspaper science sections, watchdog and consumer advocacy columns, and books and magazines on pet care. By extension, well-traveled web sites with similar aims and content could be approached for queries.

This is just brainstorming in the moment. I don't know if I'm covering ground that's already been covered in saying all this or not, as there is so much written that I can never read it all. But I had to write something about it before it completely left my brain.

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Tuesday, December 28, 2010

0 Dear fuzzy bunny letter

Dear fuzzy bunny,

Yes, that would be you.

Please know that as cute as you are and as much as I appreciate it that one of my social networking friends was wishing me well and put you on my support group wall, you just don't understand.

Yes, I know you, and know the intentions behind your being posted - to cheer me up after a hard day (week? month? year?) of feeling lousy - but to be totally honest? Fail.

What I really need is for there to be a safe place for my frustrations to be aired, and for some well-reasoned plan to improve the life of many patients to be put into effect.

Just so you know, I was really happy when I got my first fuzzy bunny years ago. I was new to having Lyme then, but I thought a few months into it was already a bit too long to have a flu plus mono and arthritis combined. And I was confused, and so glad that I had your round little face to look at in the middle of a 2 a.m. Herxheimer reaction. So relieved to know someone was on the other side of the country who was going through the same experience I was and understood the pain, the isolation, the rejection, and the misunderstanding I was enduring.

But now, it's been years of the same thing. More bunnies than I can count. They kept multiplying, like the denialists. And they didn't help me with my anger and frustration.

Life has been a rollercoaster full of doctors appointments and medical tests, research publications and blogs, networking with people I've never known and even never thought I'd know, and enduring long stretches of pain, insomnia, and grief through it all. It's been time spent trying to understand the system - whatever "the system" is - and how a small committed group of individuals can make a difference. If they can make a difference at all, that is.

But it's also been reflecting on Willy Burgdorfer saying:

"The controversy in Lyme disease research is a shameful affair. And I say that because the whole thing is politically tainted. Money goes to people who have, for the past 30 years, produced the same thing: nothing. Serology has to be started from scratch with people who don’t know beforehand the results of their research.

There are lots of physicians around who wouldn’t touch a Lyme disease patient. They tell the nurse, “You tell the guy to get out of here. I don’t want to see him.” That is shameful. So [this] shame includes physicians who don’t even have the courage to tell a patient, “You have Lyme disease and I don’t know anything about it.”

At least my primary physician had the courage to tell me that, and also told me to keep seeing my LLMD because s/he knew what to do with my condition. It was more support from this unpredicted source for which I'm grateful.

And then there's THIS bit Willy said:

"I am a believer in persistent infections because people suffering with Lyme disease, ten or fifteen or twenty years later, get sick [again]. Because it appears that this organism has the ability to be sequestered in tissues and [it] is possible that it could reappear, bringing back the clinical manifestations it caused in the first place. These are controversial issues for microbiologists, as well as the physicians who are asked to treat patients."

Seriously, bunny? If the man who discovered Borrelia burgdorferi said this in an interview and more people still aren't taking notice - including the Chicago Tribune - something is wrong. Really wrong.

Fuzzy bunny, you aren't helping me solve this problem. I like and appreciate being supported just for being me and for being human and having a rough time, but what I really want is help solving this problem.

I don't want three more months of the life I've had to lead with Lyme - let alone 30 years of the same thing.

Fuzzy, if you're going to do something other than look cute, please ask Willy what we should do, since he knows more about it than I do?


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Monday, December 27, 2010

0 Reflections On Patient Responses to the Media - Tribune

A lot of patients diagnosed with Chronic Lyme Disease took exception to the Chicago Tribune “Chronic Lyme: a dubious diagnosis”  article and slammed it, as expected. At first, it was an emotional appeal in comments online - “we’re suffering here, and I know this disease is real, how can you tell anyone it isn’t?” 

But over time comments began to shift to show some arguments and citations to support the existence of Chronic Lyme, which would have been a better response in the first place to authors who were stating from the get-go that it’s patient advocacy groups and patients wanting their experiences to be heard that are more important than science and evidence. Part of this shift took place due to the efforts of Lyme Policy Wonk's column on CALDA, stating to patients, "Please do not write about personal stories. They will not further this effort and may detract from it." But part of it was also individuals who had already chosen to respond to the article from a scientific and investigatory angle.

In the future, whenever a writer brings up the issue of Chronic Lyme’s existence (or lack thereof) in an article,  it would be refreshing to see patients, doctors, microbiologists, veterinarians, and others all throw in their two cents by citing the science to begin with - and leave the links to their personal blogs and stories as a sig file, side note, or not mentioned at all. This is a time for educating the masses, the uninformed, and the skeptical - use it wisely, you might not get this level of free publicity again any time soon.

Regarding the Lyme Disease patient community and Ms. Tol’s misquote, it would perhaps be prudent for patients to be more aware of what they write when it can be publicly accessed by reporters and how it might be taken out of context or misquoted by them.

If they misquote you, coming to your own defense is about the only thing you can do at the time - unless you have a clear case of defamation or slander on your hand - then it might be legally actionable. But if you could somehow prevent them from misquoting you or taking you out of context in the first place  - even better.  Because even if there is a correction or you have commented, the original article remains and has been seen many times over.

Lockout Signs -
It may be beneficial to use filters on your posts if some are inflammatory or ranty in nature, and in cases where you make a clearly informative post that would be of use to all new Lyme patients and medical professionals, leave those openly accessible. Position pieces proving the existence of Chronic Lyme Disease may be one of your best bets for an openly accessible post, and if enough patients post them and their facts can be verified, then right there is a huge concerted effort to unify Chronic Lyme persistence data on the internet by Google ranking.

By the way, this is not to pass judgement on anyone’s content out there. This is a yellow “proceed with caution” sign saying that you can never be too sure who is going to take what you write and run with it in a way you don’t like, and on the internet, a lot of things have happened to people’s content they didn’t like. Be careful.

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2 A Reminder: Your Patients' Bill of Rights

If you're a patient, you may have seen this bill of rights hanging in your doctor's office.

I'm reprinting it here as a reminder to empower yourself. To ask questions. To learn about options. To ask about risks and benefits for a specific treatment. To refuse a treatment until you have researched it more, or refuse the treatment entirely from the moment it is suggested.

The Association of American Physicians and Surgeons adopted a list of Patient Freedoms in 1990 [3] which was modified and adopted as a Patients' Bill of Rights in 1995 [4]:

All patients should be guaranteed the following freedoms:
  • To seek consultation with the physician(s) of their choice;
  • To contract with their physician(s) on mutually agreeable terms;
  • To be treated confidentially, with access to their records limited to those involved in their care or designated by the patient;
  • To use their own resources to purchase the care of their choice;
  • To refuse medical treatment even if it is recommended by their physician(s);
  • To be informed about their medical condition, the risks and benefits of treatment and appropriate alternatives;
  • To refuse third-party interference in their medical care, and to be confident that their actions in seeking or declining medical care will not result in third-party-imposed penalties for patients or physicians;
  • To receive full disclosure of their insurance plan in plain language, including:
  1. CONTRACTS: A copy of the contract between the physician and health care plan, and between the patient or employer and the plan;
  2. INCENTIVES: Whether participating physicians are offered financial incentives to reduce treatment or ration care;
  3. COST: The full cost of the plan, including co-payments, coinsurance, and deductibles;
  4. COVERAGE: Benefits covered and excluded, including availability and location of 24-hour emergency care;
  5. QUALIFICATIONS: A roster and qualifications of participating physicians;
  6. APPROVAL PROCEDURES: Authorization procedures for services, whether doctors need approval of a committee or any other individual, and who decides what is medically necessary;
  7. REFERRALS: Procedures for consulting a specialist, and who must authorize the referral;
  8. APPEALS: Grievance procedures for claim or treatment denials;
  9. GAG RULE: Whether physicians are subject to a gag rule, preventing criticism of the plan.
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3 Chicago Tribune “Chronic Lyme: a dubious diagnosis” Post-Mortem

It took a couple weeks of writing, re-writing, and re-reading to bang out the five part response to the Chicago Tribune’s “Chronic Lyme: a dubious diagnosis” article.

I said a lot about the article in terms of how a reader might want to ask questions at each step of the way, and offered some feedback on the content directly by posting some commentary on each section. The general idea was to encourage anyone reading the article to question the veracity and purpose of each bit of information in the article and consider doing their own investigation on the issue of Chronic Lyme.

One of the things which bothered me to begin with was the title. “A dubious diagnosis” doesn’t really seem to fit the authors’ position communicated in the article. What would have been a better title would have been, “Chronic Lyme: disciplined doctors and alternative medicine fraud” or something like that - because the article doesn’t even explain why Chronic Lyme is a dubious diagnosis. It just quotes a so-called expert about it and spends most of the article exposing the disciplinary records of two doctors and one case of fraud.

But this one thing is more of a nitpick. It was only one of several issues with the article, and I don’t even know if I have the stomach to continue discussing all of my issues with it... Dealing with writing five entries’ worth of commentary and questions on the article burned me out somewhat.

My general take on the article is that the writers were writing a negative position piece on Chronic Lyme Disease to include it on their series of articles on dubious medicine without really investigating it. It looked at the worst possible side of it without considering the alternatives or the full picture because the writers’ goal was to call it dubious in the first place and present “evidence” showing why it was dubious.

As a piece of investigative reporting, it failed abysmally. As a position piece explaining the science behind Chronic Lyme Disease or even the bacteria, Borrelia, that causes it, it failed. Even in supporting its claim that Chronic Lyme is a dubious diagnosis, it failed, because nowhere in the article is scientific evidence given that proves Borrelia bacteria cannot persist - the closest the authors get to touching on that issue is mentioning clinical trials where extended courses of antibiotics are shown not to have a lasting effect in three trials and a positive effect in one.

The article fails to pass the scrutiny of Carl Sagan’s Baloney Detection Kit (what I myself think of as Carl’s BS Detection Kit, but Carl was always more reserved and less crude compared to me) on multiple counts, too, which I’ll outline below:

Ad hominem - attacking the arguer and not the argument.

The authors decided to focus on two doctors who treat Lyme Disease who have disciplinary actions on their record and one charlatan who admitted guilt in a court of law. None of these prove or disprove the existence of Chronic Lyme Disease.

The authors had one doctor insult the IDSA and a infectious disease specialist insult high-earning doctors who take advantage of patients. Neither of these acts prove or disprove the existence of Chronic Lyme. They only prove that two doctors can insult each other.

Argument from “authority”.

The authors take the position that they are an authority on writing this article about Chronic Lyme Disease, since they are reporting it. But what claims do they have to being an authority? Do either of them have experience in science journalism? Have either of them studied microbiology or done extensive research on the nature of a Chronic Lyme Disease or Post-Lyme Syndrome diagnosis and its causes?

The authors refer to the IDSA 2006 Lyme Disease guidelines panel as the experts - as if there were no other experts to which to refer to - when Carl Sagan states that “Arguments from authority carry little weight (in science there are no authorities).” There are many academic researchers, microbiologists, doctors, veterinarians, and others who are knowledgeable about Borrelia bacteria and studies done on the issue of persistence that the authors could have used as reference sources.

Carl Sagan said, “Whenever possible, there must be independent confirmation of the facts” and “Encourage substantive debate on the evidence by knowledgeable proponents from all points of view.” This did not happen in this article.

Argument from adverse consequences (putting pressure on the decision maker by pointing out dire consequences of an “unfavorable decision”)

The authors engage in culture of fear tactics designed to encourage the public to get upset about the use of long-term antibiotics by focusing on the negative outcomes of their use for Lyme Disease without focusing on the positive outcomes of treatment and the fact that antibiotic use for other conditions has the same risks.

The authors also point out that two specific doctors who have treated Chronic Lyme Disease have ended up getting disciplinary actions on their records without pointing out that a number of these actions were relatively minor, and authors focused on one doctor who was accused of harming a patient and who has also charged very high fees for services. These doctors who treat Chronic Lyme Disease are a fraction of the total - a total which was deliberately ignored. Not all doctors have had charges leveled against them and those that have have not all been guilty of them.

Not all doctors charge very high fees for services, and when compared against other professionals in their field, actually charge a lot less when comparing a full hour appointment to a ten minute fly-by managed care appointment.

Appeal to ignorance (absence of evidence is not evidence of absence).

There is not one statement in the entire article which proves that Chronic Lyme Disease does not exist. There is not one statement that proves that Borrelia bacteria cannot persist.

The authors avoid these issues entirely and just state that the condition may or may not exist and at some point said it never existed in the first place - a sign of an inability to maintain a consistent position.

The authors failed to investigate and produce evidence that showed what happens to Chronic Lyme Disease patients who are not treated with antibiotics, so that the reader could not weigh the negatives of going without treatment. Instead, authors played to the public's fears about antibiotic resistance - which can occur for numerous reasons and at much higher rates than CLD patients will produce.

Observational selection (counting the hits and forgetting the misses).

The authors did not look at all the data and share the data where persistent Borrelia has been shown to exist. The authors did choose to focus on four trials which were about antibiotic treatment and not about persistence. The authors already had their position picked out before they began writing, rather than to leave doubt that reflects the state of the science.

Statistics of small numbers (such as drawing conclusions from inadequate sample sizes).

Choosing two doctors from the entire medical profession which treats Chronic Lyme Disease (CLD) definitely suffers from the statistics of small numbers. How can these two doctors possibly be representational of all the doctors who treat CLD? And even with just two, each chosen had very different accusations made against each of them. One could even say that the fact each of them had disciplinary action against them was one thing they had in common, but after that, they diverged.

The four clinical trials that were conducted suffered from this. More trials need to be conducted with varying designs, goals, and larger sample sizes. Proving persistence is not about proving whether or not a specific set of antibiotics works to treat certain symptoms by a given timeframe - that’s a different motivation.

Carl Sagan said it is important to conduct control experiments - especially "double blind" experiments where the person taking measurements is not aware of the test and control subjects, and to also check for confounding factors - separate the variables. An attempt to do the first was made by having these clinical trials, but it seriously fell down on the second. Once the small numbers issue is added, the trials have less weight on that count alone.


The authors said at different times that Chronic Lyme Disease might not exist and never existed. These are two statements, one that has doubt and one that has no doubt.

Non sequitur - “it does not follow” - the logic falls down.

Just because there are doctors who have disciplinary actions against them and just because there are charlatans looking to make a quick buck off sick people does not mean that Chronic Lyme Disease is dubious diagnosis. It just means that there are doctors out there who treat Chronic Lyme Disease who happen to have disciplinary actions against them, and like many other diseases, CLD is targeted by internet marketers.

Just because there are four clinical trials of which three of those four showed that long-term IV antibiotic use may not confer long-term benefit on a small group of people with CLD symptoms does not mean CLD is a dubious diagnosis. It means that by the parameters of the trial design, that group of patients did not show lasting improvement.

Just because doctors make a lot of money from their services doesn’t mean all doctors who earn a lot of money are out to take advantage of patients. That argument falls down almost immediately when you realize how much the average doctor and average specialist earns, and then learn just how much their overhead really is even for the typical doctor.

Just because one doctor (or even ten or more) is accused of misdiagnosing a patient with Lyme Disease and has disciplinary action against him or her does not remove the fact that:
1) people do have Lyme Disease,
2) people might have a chronic form of this disease,
3) other doctors misdiagnose patients with other conditions all the time, and
4) other doctors properly diagnose patients with Lyme Disease all the time, including more stubborn cases to beat as in neuroborreliosis.

Excluded middle - considering only the two extremes in a range of possibilities (making the "other side" look worse than it really is).

On one hand, we have people who believe Chronic Lyme Disease is real, caused by a persisting infection, and they are suffering from it. On the other hand, we have people who believe it does not exist at all, and therefore, long-term antibiotic treatment for it is dangerous and unnecessary. The truth is far more complicated than either position. It may be that a combination of conditions give rise to Chronic Lyme Disease, and it may be both based on persistent infection and immune dysregulation. It may be only a subset of the population gets more severe symptoms after infection. It is already known that different genotypes of Borrelia produce different symptoms, and this does affect outcome, too - some forms of Borrelia produce a rash but no other symptoms; some produce no rash but severe symptoms; some produce both rash and severe symptoms. Borrelia miyamotoi produces relapsing fever. It goes on from there. Also, many people who get bit by a tick often get infected not only with Lyme Disease but with other infections - some of which can relapse (e.g. Babesia) and are hard to eradicate.

The black and white-ism of “chronic infection is real” versus “chronic infection is not” is an undercurrent of the article in portraying the experts’ view and that of a few doctors. What is avoided entirely is the excluded middle - scientists, researchers, doctors, and many others who are full of doubt of the single cause hypothesis and want to lay all the facts on the table. It is this excluded middle I would like to see more about.


Okay, I could throw something in here about "Occam's Razor" and how if someone still has the same symptoms they had 4 weeks after a tick bite that they had 3 weeks after a tick bite, that the most logical conclusion to draw is that the patient is still infected with a tick-borne illness, but frankly, I'm tired. I'm going to save energy for a more positive review for the Roanoke Lyme Blog series, Lost in the Woods.

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Sunday, December 26, 2010

3 Forum posting rules I do not understand

Hey folks, hope the past couple of days were good for you - and for those of you who are suffering from Lyme Disease, at least tolerably okay. The holidays can be tough when you aren't doing so well.

I was going to post a post-mortem piece here on the Chicago Tribune article, "Chronic Lyme: a dubious diagnosis", but something else came up I wanted to mention first.

And that is forum posting rules for Lyme patients.

Basically, there is one aspect of them I do not understand nor know how to work with. That, in a moment...

First, I understand the need for confidentiality in sensitive situations. I do. And when it comes to discussing my medical condition and doctor's advice in a forum, I keep our identities confidential when asked. I use a username, and my doctor is "my LLMD" or even just "my MD". When I talk about another LLMD, the phrase I use is, "another LLMD" or "another MD".

I get that. This rule has been used on a number of forums elsewhere.

However, I find it a bit jarring when I post about Dr. Raxlen and Dr. Ryser, when referring to the Chicago Tribune article which mentions them, and the moderator edits my post by changing their names both to "Dr. R".



Given that I discussed both doctors in succession, one paragraph after the other, it might lead the reader to think I was discussing the same doctor - when they are very different doctors with different backgrounds and experiences. And different genders. And different in other ways, too.

I thought to myself, "You could at least have changed one doctor to "Dr. R1" and the other to "Dr. R2", though, I admit, that second one sounds suspiciously like a character from George Lucas' upcoming sequel, "Doctor Droid: The Bot Flies" or something."

I didn't like the post-production editing of my post because I felt the way it was done could lead to confusion.

It confused me even more when I found that in the handful of posts I contributed to that the rule was arbitrarily applied, too.

Dr. Benjamin Luft is an academic physician - but more of an academic researcher, really. Recently mapped 13 genotypes of Lyme. His name got shortened to Dr. L in my post. I don't know why.

Dr. Allen C. Steere is an IDSA doctor, and he diagnoses patients and works in rheumatology, but his name did not get shortened in my post.

And then mentioning Dr. Steere causes issues with other doctors I know of in the Lyme Community who would have the same problem when their names are initialized.

I know of two Dr. S's... at least two. One is Dr. Stricker. Someone else on the forum wrote "Dr. Stricker" and his name did not get shortened.

And I know of more than one Dr. H, too. I think the count is up to, what, three?

But how can I write about them so that people do not confuse them with each other? It's possible other patients will think the wrong thing of the wrong people - or if I'm lucky, hopefully the right thing of the right people?

I think it would really solve the problem if people would determine that one Dr. S is Dr. S1, and another is Dr. S2, and so on. Or wait... would it? Because how do we know from post to post whether or not I've written something that's attributed to Dr. Stricker or Dr. Steere or yet another Dr. S?

Or what if someone else posts about Dr. S? Which Dr. S? One of my original two, or yet a third or a fourth Dr. S I'm not even thinking about?

Crap. That doesn't solve the problem, either. I don't want someone new to the forum to think I am writing something Dr. Steere wrote when it was Dr. Stricker, or vice-versa. They are two very different people.

Heck, I don't think using an initial solves the problem.

There's got to be another way.



I think it would be best if we did away with initials entirely. Doing so makes it less likely to lead to false attribution by people who are trying to guess which post is about which doctor.

Here's an idea, folks:
  1. Have everyone use "my LLMD" or the phrase, "I heard there's an LLMD who does ____" for mentions of an LLMD, unless the LLMD is mentioned in a publicly accessible online source in their own words and that is what you are posting about - for example: an interview with Dr. Stricker on Lyme Disease Research Database, a news article in the Chicago Tribune, a video with Dr. Martz on youtube, a clip of Dr. Jemsek from "Under Our Skin", a book review of Dr. Liegner's book on Amazon, or a publication found on PubMed (e.g. rebuttal letters by Dr. Stricker on IDSA Guidelines). If you're already referring to these things and linking to them, what is the point of writing an initial? The identity of the doctor is right there at the link.
  2. Have everyone use the doctor's name when it's a non-LLMD and it is referring to a publically accessible reference to them such as above. Example: "Dr. Sanjay Gupta is the CNN's chief medical correspondent on television", rather than "Dr. G is the CNN's chief medical correspondent on television". Otherwise, use "my MD" or "an MD".

I say this, not knowing a better way to deal with it when it does seem like the rule was arbitrarily applied at a forum I only just joined. If they applied "Doctor Initial" method to literally all doctors, I'd have less trouble with understanding the rule, but if they did, they still need a way to ensure the initialized doctors do not get confused with each other somehow.

Any ideas how to avoid this issue? Short of spelling out all doctors' names?
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Friday, December 24, 2010

0 To you and yours...

For those of you celebrating it, I wish you a very Merry Christmas!

I'm going to be offline mostly for the next two days, be back later. =)
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Thursday, December 23, 2010

0 Lost In The Woods: Navigating the Chronic Lyme Debate

The Roanoke Times has a three part series about Chronic Lyme Disease which might interest you:

There are three articles and a few videos on the debate over how to diagnose and treat this condition. I recommend checking out the comments, too.
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Wednesday, December 22, 2010

1 Chronic Lyme Disease: The real questions

Just a passing brain dump, after reading through the Chicago Tribune article on Chronic Lyme Disease and reflecting on what I'd read and learned about Chronic Lyme Disease prior to reading it:

Why won't the IDSA simply explain to the public what is causing what some patients call Chronic Lyme Disease and some call Post-Lyme Syndrome? Don't they know? If they don't, and it is just speculation, then numerous hypotheses belong on the table.

Why do some of the IDSA's own members use the term "Chronic Lyme Disease" in their papers and on their own patents - including a patent as recently as 2005 - if Chronic Lyme Disease does not exist?

Why have some of the IDSA's own members made statements about the persistence of Borrelia and its chronic nature in their own research publications - but when asked today deny Borrelia persists and can be chronic?

If there was a shift in opinion from these IDSA members from a persistence model to an autoimmune model explaining why Chronic Lyme Disease occurs, what was the research or pivotal event which led to that shift?

Why do Chronic Lyme Disease patients who go to other doctors to ensure they are not missing any additional diagnoses often fail to find any other cause for their symptoms?

If Chronic Lyme Disease is (as some IDSA doctors and others have suggested without any scientific proof given) a psychological condition, why is it that the medications used to treat such conditions are ineffective in eliminating the symptoms in Chronic Lyme Disease patients when tried?

If, as it is claimed, months of antibiotics did not help the patients in trials who have Chronic Lyme Disease - is it possible that the issue isn't that the patient must not have Chronic Lyme Disease - but instead the wrong antibiotic treatment was used during the trials?

Is it possible that due to antigenic variation and sequestration of Borrelia bacteria, it can evade antibiotics successfully, and that their slow reproduction cycle can require a longer treatment cycle in order to kill all the bacteria?

Can spirochetes found in tissues and collagen after antibiotic treatment cause symptoms based on infection even if those spirochetes are found to be non-dividing? Dr. Stephen Barthold states they are still infectious.

How do the mouse infectivity tests apply to human beings?

What does the IDSA think of this research by UC Davis showing persistence of Bb?

What does the IDSA think of this research on neuroborreliosis positive patients with negative cultures?

What percentage of Lyme Disease patients go on to develop neuroborreliosis? Consider that question carefully, in light of the publication just linked.

If  even just asking these questions are considered the mark of ignorance in the public and Chronic Lyme Disease patients, why doesn't the IDSA educate those who have these questions rather than offer tautological sound bites about their opinion?
Because so far,  few of these patients are satisfied with the response of IDSA members who wrote the guidelines for Lyme Disease. So far, all the IDSA has said in recent public statements and responses is  that in their professional opinion, Lyme Disease is not chronic.

But that's not enough. They want those IDSA members to show them how they arrived at their opinion.

And they want to know more about their opinion beyond the four trials that detractors keep citing repeatedly - especially when recent research leads to more questions about Chronic Lyme Disease.

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0 Part 5: Critique of Chicago Tribune's "Chronic Lyme Disease: a dubious diagnosis"

[ Ed. - This is part 5 of a multi-part critique of the Chicago Tribune's article, "Chronic Lyme Disease: a dubious diagnosis".]
"Bernard Raxlen, the doctor who received an award at the 2008 Turn the Corner Foundation gala, has faced four disciplinary cases before the Connecticut medical board in the past decade."
Structural nitpick: This statement would be better incorporated into the first page of this article, as well as the following paragraph.
"The current case initially involved charges that Raxlen told a Massachusetts woman with fatal Lou Gehrig's disease that she had a Lyme infection and treated her with an illegal drug from Germany. After years of legal wrangling, what remains are charges that Raxlen, as a psychiatrist, failed to diagnose and treat the patient for severe depression or refer her for such an exam and failed to consider any diagnoses other than Lyme."
This is the second time that Dr. Raxlen's and his disciplinary record is being mentioned in the same article, with a repeat of information offered earlier. The reader at this point might get the impression that Dr. Raxlen has repeatedly been charged with the same kind of actions when the article is just restating the case.

But at least in this section, there is more information than the reader had before when Dr. Raxlen was first mentioned on the first page or section of this article: the patient was treated with an illegal drug from Germany and failed to consider any diagnoses other than Lyme. 

This doesn't look good for Dr. Raxlen. Even if a doctor can diagnose and treat Lyme Disease and its coinfections, doctors have the responsibility of ensuring their patients are not suffering from other conditions concurrently and offer differential diagnoses and treat anything that comes up. If it is beyond their expertise, they have an obligation to acknowledge their limitations and refer the patient to a specialist who knows more about their condition.

Dr. Raxlen has failed on more than one count here to fulfill the role of a good doctor - and as a psychiatrist, failed to offer the diagnosis of depression when he specializes in its treatment. Whether or not Dr. Raxlen diagnosed the patient with Lyme Disease correctly or incorrectly became moot in the end - he was found guilty of not diagnosing the patient with a condition that falls within his area of expertise.

On the issue of Lyme Disease which is neuroborreliosis, it is possible the patient suffered depression due to an infection in their CNS/brain, in which case treating it with antibiotics would have been the right course of action. But even if this had been the case, a dual diagnosis could have been made and the depression treated.
"In an interview, Raxlen said the patient did have Lyme disease. He said the relationship between Lyme and Lou Gehrig's disease "is unclear." (Last year, experts on ALS wrote in a journal devoted to the disease: "There is no convincing evidence that ALS can be caused by Lyme disease.")"
 Which experts? Which journal? What evidence has been presented where that ALS can be caused by Lyme Disease, convincing or not?
"Raxlen said he is proud of his medical record. Charges of patient harm have been repeatedly dismissed. He has been sanctioned twice for lesser charges related to his failure to turn over patient records to the medical board or insurers. Charges in 2003 related to a Lyme patient's suicide were dropped entirely. "
If charges of patient harm have been repeatedly dismissed, doesn't this mean Dr. Raxlen wasn't guilty of the actions of which he was accused? Who filed the charges of patient harm in the first place? Was it the patient, the patient's family, another doctor, or an insurance company? Doesn't it make a difference who filed the charges?

Due to Dr. Raxlen being a psychiatrist, the odds of his being held accountable for a patient's suicide are considerably higher than being a doctor in another area of specialization. Given that the authors did not mention this charge earlier, the authors seem to be trying to add emotional punch to the weight of Dr. Raxlen's record by mentioning the suicide now.

'"I've never been reprimanded for my clinical judgment," Raxlen said.

Stacey Sobel, executive director of the Turn the Corner Foundation, says it's a shame Raxlen and other doctors in the movement have been disciplined. "We look at them as doctors who are trying to help Lyme patients," she said."'
This second paragraph doesn't make sense to readers. Why would the executive director say it's shame Raxlen and other doctors in the movement have been disciplined? In light of what Dr. Ryser did - which sounds egregious compared to Dr. Raxlen - is there a point where Sobel would agree that being disciplined is the right course of action and not a shame to have happen?

 Why have these doctors been disciplined? What have they done to help Lyme patients?

The authors neither explain the full extent of the actions and charges made against these doctors, nor do they describe how they have helped Lyme Disease patients.

So far, all they have done is inform the reader that Dr. Ryser and Dr. Raxlen have treated patients who were diagnosed with Lyme Disease and these doctors have been accused of charges and considered for disciplinary action. So far, they have pointed out one man, Bransford, who conned people out of their money and admitted so in court.

But none of this has established whether or not Chronic Lyme Disease is possible or not. It has only pointed out that there are doctors out there who have been disciplined who happened to diagnose patients with Lyme Disease and there are charlatans who exploit people who are sick. Nothing new that the public hasn't heard about or been outraged about before - and also nothing that is really particular to a diagnosis of Lyme Disease, chronic or otherwise.
"While they have lost the scientific battle so far, chronic Lyme activists are winning politically. In recent years, they have persuaded politicians in 13 states to introduce Lyme-friendly bills, many of which prevent medical boards from disciplining doctors for treating Lyme with antibiotics long-term."
What scientific battle have the Chronic Lyme activists lost so far? What do Chronic Lyme activists think about Lyme Disease and why? What scientific arguments do they have in support of Chronic Lyme and why are they valid or invalid?

Why would Chronic Lyme activists be able to persuade politicians in 13 states to introduce Lyme-friendly bills? What persuasive arguments do the activists present to state legislature? What kind of evidence do they present that convinces legislature to pass bills which prevent medical boards from disciplining doctors for treating Lyme with antibiotics long-term?

[ Mention of different states which passed legislation omitted for brevity; not germane to discussion. ]
"It can be an uphill battle getting politicians to side with science when sick patients testify that long-term antibiotic treatment helped them, said infectious disease physician Dr. Jeffrey Parsonnet, who testified against a New Hampshire doctor-protection bill.

"It is all focused on either siding with the big, rich doctors with their BMWs or this poor person who is suffering and misdiagnosed," said Parsonnet, a professor of medicine at Dartmouth Medical School."
Using Carl Sagan's Baloney Detection Kit,  Dr. Parsonnet is being interviewed here in the role of being an expert who is helping the authors build their straw man by using ad hominem attacks.

Dr. Parsonnet is not arguing the case for science, and is not stating any facts about why he thinks politicians are not siding with science when it comes to sick patients testifying about long-term antibiotic treatment. Instead, Dr. Parsonnet attacks "big, rich doctors with their BMW's" - presumably indicating "the Dr. Rysers of the Lyme Disease world" - and mentions the "poor person who is suffering and misdiagnosed" to gain sympathy for the patient.

Taking a step back from this, though, many doctors are rich and own BMW's. The country doctor who charges $40 a visit is a relic of the past. The median salary for an anesthesiologist is $336,865 per year, and only a tiny percentage earn less than $200,000 annually. That should buy a fair bit of BMWs, possibly one for the year. The median salary for a family physician is lower, at $167,327., and only a tiny percentage earn less than $130,000. per year. Doctors as a general rule are not exactly getting low salaries, and specialists, surgeons, and anesthesiologists are at the top of the payscale.

Physician car ownership and tax brackets don't even support the goal of the authors of the article - what the authors want is to complete their position piece showing that doctors are treating a disease that might not/never exist(ed) and charlatans who take advantage of sick patients.

The point Dr. Parsonnet should be getting into - if any at all - should be his proof of whether or not Lyme Disease can persist and how doctors can be ethical in their treatment of patients who are suffering; how doctors can look at all possible diagnoses of their patients including ones which are less well-understood or known.

"The biggest boon to the chronic Lyme movement came when Connecticut Attorney General Richard Blumenthal launched an antitrust investigation of the Infectious Diseases Society of America panel that set Lyme treatment guidelines in 2006. The panel was made up of some of the world's top experts in Lyme disease.

But Blumenthal, soon to be a U.S. senator, said the society undercut its credibility by empaneling doctors who consulted for insurers and had financial interests in drug companies and Lyme disease diagnostic tests. A spokeswoman for the Infectious Diseases Society of America (IDSA) said the panelists did not benefit financially from the guidelines, which recommend generic drugs and lab tests.

Because of a 2008 agreement between Blumenthal and the IDSA, a new panel considered evidence submitted by all sides. Panelists were screened by an independent ombudsman to ensure they had no significant financial ties to Lyme disease."
Who was this independent ombudsman? What does "had no significant financial ties to Lyme Disease" mean? What if that included doctors who received a significant portion of their income from treating patients with Lyme Disease and coinfections, including infectious disease doctors who would be bound to see many Lyme Disease patients? In this way, wouldn't those who had the most experience with Lyme Disease be out of consideration for considering evidence?
"In April, the panel released its report. It agreed with the 2006 panel: The evidence for chronic Lyme disease was weak, and long-term antibiotic treatment was dangerous and ineffective."
Who was on this panel that was selected? Why did they agree with the 2006 panel? To what degree did they agree - were there any inconclusive decisions or questions on any section of the guidelines? Why is the evidence for Chronic Lyme Disease weak? What is the evidence that was given to the panel?

None of these questions are addressed or answered in the course of this article. The authors present the basic history of what has happened with the treatment of Lyme Disease guidelines without further investigation into the science and research of Borrelia bacteria.
"As is often the case in this era of dubious medicine, the scientific review did not put the issue to rest. Instead, the panel's decision was a call to arms for chronic Lyme advocates."
Why didn't the scientific review put the issue to rest? Why was it a call to arms for Chronic Lyme Disease advocates? Did the advocates have any evidence that conflicted with the panel's that could be considered scientifically valid? Did the panel have any other agendas which did not involve their financial gain from Lyme Disease related services or products which could have influenced their decision?

"On a popular blog for Lyme sufferers, Ashley van Tol wrote that "infecting the committee members with Lyme sounds great because we are pissed off."

After acknowledging that would not be "realistic or appropriate," van Tol went on to urge readers to make their voices heard, because personal stories are more powerful than scientific guidelines.

"In a competition between posting the IDSA guidelines or your Lyme story," she wrote, "it is going to be you that they choose to read about."
The authors have taken one quote (which Ms. Tol later stated (online in a comment in response to the article) was a misquote) of one Lyme patient and used it to represent the sentiment of all Lyme patients. By using one (mis)quote which characterizes a Lyme patient as wanting to infect others - even with a retraction - the authors are painting Lyme patients as angry and vengeful. By adding the additional note about a patient saying personal stories are more powerful than scientific guidelines, the authors are able to support their platform they've been promoting all along: Chronic Lyme Disease is not about science or proof, but about the stories that people tell others about their experience.

And this is a problem, because right here both sides of the argument - one against the idea that Chronic Lyme Disease exists and one invested in it - are not demonstrating their scientific knowledge in this article, which is one of the few things anyone outside of both sides of the argument with any power to change things might be willing to try to understand and hear.
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