Testing is not the be all and end all.

Last week I spoke with a prospective patient who was calling from Alberta. They had a negative elispot test, which is a T-cell assay for an inflammatory response specific to lyme, and was then told that based on this they absolutely did not have lyme. However, in briefly speaking with the patient, they were interested in seeking a second opinion because they had many of the symptoms, across multiple systems, which were migratory and intermittently severe.

No lab has a 100% sensitivity or likelihood of catching lyme disease. Coinfections could be at play, different strains or species of lyme, or the patient may just not have a very robust immune response against lyme, as the usual lyme testing is an indirect test, aimed at detecting the immune response. Further, for tests like the western blot, the CDC interpretation may be negative, but other published criteria might be positive for lyme, or at least hint that retesting or treating and then retesting would be a suitable course.

Often, if a western blot is equivocal or has some bands that are positive but not many, then after a discussion of the risks and possible benefits of treatment we might start on a course of treatment if the clinical picture matches lyme or a related condition. If there is no clear clinical response, then sometimes retesting the lyme western blot can be informative, looking for an increase in the bands seen.

last week three patients stopping treatment...

I had used the same example for three of my patients this last week. One patient had started seeing me around October of last year and had been on a combination of antibiotics, cefixime, then doxycyline and azithromycin, and had had about 60-75% improvement after about 3 months. We ran into unfortunate side effects with the gut, and decided to discontinue antibiotics for 2 weeks. 

I then had an email that the patient did not want to go back on the treatments since she had felt about 90% back to normal after discontinuing the antibiotics. This is absolutely the best choice - when feeling well, stay off and evaluate for if and when there is a recurrence.

Sometimes there is a recurrence after a 4 week honeymoon type cycle - due to the biology of lyme. There seems to be an increase in growth rate every 4 weeks or so after a significant change, so often we can do well until then. Often times, even if there is residual lyme (for example, if cyst forms and biofilm communities were not treated) the burden is low enough that there is no clinical recurrence.

Another patient had started with the Marshall Protocol with another practitioner and most recently we had finished clindamycin and quinine for suspected babesia-like infection with chills, sweats, air hunger, cough. These symptoms had improved, and previous things like joint pains had improved as well. She was still very fatigued, but again, we want to see if the drugs themselves are causing the fatigue, and whether or not hormone supportive and immune supportive measures can keep the previous symptoms of joint pain, headache, neck stiffness, away. We are not likely done treatment with this patient, but sometimes stopping therapy allows for us to see what the new baseline truly is, and if in fact symptoms come back we remember that it is still advantageous that we had stopped since the medications almost universally work only when the organisms are metabolically active. Stopping the medications allows the more dormant forms to become active again, and then susceptible to treatment.

first post - hopefully for easier updates

Since changing the website from a very dated design approximately 4 years ago, there has not been an update to the basic pages of the site in quite some time. Hopefully this format might make it easier to note some questions or events that happen during the week which might be worth sharing. 

I'll start with a positive. A long time patient of mine described a term that I never had heard of or thought of before, naming a "post-lyme bucket list." This came up because the patient had come into the office to talk about options for treatment if she had a relapse when snow-birding for the winter - something she hadn't been healthy enough to do for some time. I thought it was great that throughout the struggles of treatment, she had a positive mentality to keep a post lyme bucket list and thought it was even more great she could actually do it.

--- this particular breakthrough was quite interesting. Instead of systemic treatment, it came from localized treatment of MARCONS after systemic lyme treatment.