We are having a hard enough time convincing the mainstream of medicine that persistent Lyme infection exists. I am concerned that some ILADS physicians have adopted questionable and unsubstantiated approaches regarding the diagnosis and treatment of purported co-infections. There are a lot of test for Lyme. There is well documented seronegative disease. OK- we are on fairly solid footing here. I am afraid some LLMDS sometimes conjure up diagnoses out of whole cloth- based on my observations. For example, a patient may report neuropsychiatric symptoms; AND without further ado, the physician may then proclaim the patient has "Bart." (Bartonella). These patients usually have negative serology, negative blood smears and negative PCRs for all the known strains of Bartonella; yet, the physician will make the diagnosis with a sense of absolute certainty. The facts do not support this conclusion. There is no evidence that BLO- Bartonella like organisms exists. Therapy then, is directed against these clinically diagnosed "Bartonella." Perhaps drugs like Levaquin- Rifampin- Zithromax and Minocin work for these patients because of their excellent penetration into the central nervous system, past the blood brain barrier. They are all effective against Borrelia burdorferi- Lyme. More often than not we don't REALLY know what we are treating. Patients with established Lyme disease respond differently to different antibiotics and different antibiotic combinations.
Chronic Lyme disease, or Lyme Borreliosis Complex if you prefer, is a complex multi-system disease with protean manifestations. The illness may frequently be associated with a polymicrobial mix of other pathogens. But much of this is very speculative at this time. For example, patients with severe episodes of sweating- considered the sin qua non of Babesiosis by many Lyme experts, frequently get better with only Lyme antibiotics. And- patients with positive Babesia antibodies may show no signs of the illness and get better without specific therapy.
Frequently the treatment of Lyme and its associated co-infections is based on empirical grounds, trial and error. Patients may respond to a wide range of therapeutic options, frequently in unexpected ways. Patients may indeed have a mix of pathogens contributing to the disease state. These may include: Mycoplasmas, Chlamydia pneumonia, Ehrlichia, Babesia, viral infections and many as of yet, unidentified pathogens, in addition to the known co-infections. For example, Clongen labs has identified an organism frequently found in the blood stream of patients afflicted with tick borne illness. It looks like a small bacteria but no DNA match can be found. Research into the nature of this organism is still ongoing. Clongen has twice reported bacteria inside white blood cells which resemble Ehrlichia. However, all standard tests, serological and PCR for known variants of Ehrlichia and Anaplasmosis have been negative. I don't know what this bug is. An unusual species of Rickettsia has been found in a high percentage of Maryland Ixodes ticks. The significance of this microbe has not been determined.
Rather than labeling patients with: Lyme- Babesia and Bartonella, perhaps it would be best to describe the individual clinical responses seen in each patient. For example, patient A has a syndrome which is responsive to Rifampin.
Why is this important. It is beyond important: It is critical.
A narrow ILADS paradigm or box, can ironically begin to resemble more and more the sort of narrow paradigm or box utilized by the IDSA, of which we are so critical. The IDSA box in my opinion is wrong, but it is fact based. If ILADS is to successfully spar against the IDSA it needs to marshal arguments which are clear, cogent and fact based. LLMDS are for the most part community primary care physicians. The opponents have all the resources of medical academia at their disposal. The fight is lopsided at the outset.
And I am very concerned that the LLMD box may have already disenfranchised some of the most critical players in the Lyme versus IDSA debate. The academic support for the chronic Lyme cause has come from Fallon and Donta. If they don't buy into the significance of the co-infection hypothesis, this should not be seen as a negative. Rather, it is a positive. They are academic in their approach. If they are going to give their stamp of approval on something there has to exist a significant body of evidence to support that thing.
As the two sides of the debate hunker down and prepare for battle, with medical licenses on the line and the future ability of Lyme patients to have access to any LLMDS, the lines must be clearly drawn. It must be a fight about whether or not Lyme organisms persist in the body and cause chronic illness in patients necessitating the use of long term antibiotics.
Additional point: It has come to my attention that some advocacy groups within the Lyme community have been over zealous. Changes need to be incremental. If groups insist that every thing change at once this will continue to have disastrous effects on efforts for political reform. Sometimes well meaning individuals can become their own worst enemies.