Dapsone in the treatment of chronic lyme
In Chicago at the ILADS conference and scientific meeting for 2018, there was a very interesting update and breakfast presentation on the use of dapsone as a persister drug agent in chronic, recurring lyme disease and post - treatment lyme disease syndrome. It is important to note that the terminology is quite descriptive and accurate: it is not "post-lyme syndrome" - implying that the lyme is gone, but rather simply making a statement of "post-treatment lyme disease syndrome" - which can theoretically be applicable to both the presence of residual lyme after standard treatment, or the persistence of lyme symptoms without the active infection. In either case, certain therapeutics are very useful.
In my own practice a large part of treating persisting symptoms involves not only trying drug and herbal antibiotics again, but also evaluating especially the gut ecology (even more important after the usual antibiotics) as well as evaluating for hidden and occult parasitic and protozoan infection. A second very important measure to assess and treat includes the assessment of hormonal function, along the hypothalalmic pituitary adrenal and thyroid axis. In particular, either salivary analysis to assess the adrenal hormone rhythm or a 24 hour urine test to quantify the amount of adrenal and thyroid hormones. Thirdly, we also assess for and treat neurological pathway dysregulation, as described by Brian Fallon, MD, and the use of such agents including noradrenergic antidepressants, GABA medications including gabapentin, pregabalin, lavender.
The breakfast presentation from Dr Horowitz described further antimicrobial approach separate from the above. Doxycycline and rifampin or rifabutin (rifabutin being more potent) alongside the drug dapsone were used in such persistent cases. Nystatin and an anti-rheumatic or anti-malarial were used concurrently, alongside a host of natural agents also described (in the literature from Zhang et al) as being effective against persister forms of lyme. Probiotics were on board.
Such a protocol had replaced, in Dr Horowitz' practice, apparently the majority of cell wall drugs like amoxicillin, penicillin, and IV drugs like ceftriaxone. He described dapsone penetration into the central nervous system even at relatively low dosages. Herxheimer type reactions were problematic, as were drug side effects.
In my own experience prior to this I had found the dapsone to be quite effective, but my level of comfort was such that we would generally have to stop the medications due to side effects relatively early. Even so - there seemed to be some persisting improvements in many patients. At this meeting, there was discussion of such side effects and the dosages of the protective nutrients used, such as methyl folate, methyl folinic acid, methyl B12, were used at very large dosages, exceeding what I had been giving previously. This seemed to give some further measure of protection. Further, glutathione and other reactive oxygen quenching treatments such as lipoic acid were liberally used with good protective effect.
With dapsone, we have to watch out for herxheimer reactions, anemia, rashes, and methemoglobinemia. Often tapering up helps with the herxheimer reactions, and the use of LDN (low dose naltrexone) can attenuate the microglial activation that we often see in chronic lyme disease and its treatment. The anemia is described as a 3 gram drop, at which point the anemia can be reversed with treatment with higher dosages of folic acid and leucovorin. The rashes may be related to sulfa drug reactions, though in this case antihistamines (H1 and H2 blockers) have been found to be useful when using dapsone to treat chronic lyme.
If the side effects are monitored for, treatment can be very successful. The presence of coinfections complicates treatment, and both the protocols for babesia and bartonella add medications / herbal options and certainly increase monitoring need and side effect risk, but also can be very potent. Of note, while Dr Horowitz has described the use of up to five intracellular drugs to treat bartonella, some of the information on the new bartonella page on my website has described a more conservative, yet still extended treatment for bartonella, that is very promising.
In summary, dapsone is another option for assessing and treating the persisting symptoms that come in resistant, less responsive cases. This is in addition, or as an option to discuss alongside the assessment of gut flora, hormonal status, and neurological function.