A 70-year-old male believes he has had Lyme disease for over 10 years, first diagnosed 3 years ago.
He recalls a tick bite 10 years ago which led to chronic symptoms, mild enough to be ignored.
Four years ago he was admitted to a hospital with acute neurological manifestations. Primarily he complained of poor balance and difficulty walking.
An EMG was positive for neuropathy. A brain PET (nuclear scan) showed diffuse but non-diagnostic abnormalities. Despite this scan he remained cognitively sharp and still teaches high level math.
The diagnosis of Lyme was made 3years ago. Prior therapy with Omnicef, Zithromax and Mepron had been unhelpful. He has numerous concomitant chronic disorders any of which may cause neuropathy: well controlled type 2 diabetes, pernicious anemia, hypothyroidism and MUGUS.
Features of his illness include: daily night sweats for over 10 years after the tick bite and persistently elevated muscle enzymes (CPK), unexplained.
He had been already treated for more than 2 years: I have been treating him for only 3 months. He improved fairly quickly with a doxycycline based cocktail. Then Rifampin was added.
He reports that this is the first time he has not had night sweats in 10 years. Muscle enzymes normalized, first time in 4 years, and, neuropathy symptoms have improved and he is walking better.
This response was far beyond my most optimistic expectations. Discussion:
Neuropathy: from the perspective of neurologists (in general) his neuropathy would most likely be due to diabetes. All of his “mainstream” illnesses are associated with neuropathy. Never count Lyme out – or perhaps Bartonella in this case. It takes a long time for neuropathy to improve. Symptomatic relief may have more to do with Benfotiamine, a product related to vitamin B1 I suggested he try. Night sweats: His lab workup for Babesia was negative (including freshly stained blood smear). He had none of the other symptoms which are classically associated with Babesia infection, including air hunger and depression. Rifampin does improve eradication of Lyme persisters when added to other antibiotics but I think the response to Rifampin leads us to Bartonella. There are a host of new and emerging species of Bartonella seen association with tickborne illness.
Muscle enzymes: It is well documented that Lyme can directly infect muscle tissue and elevate muscle enzymes. Bartonella? Bartonella infection causes vasculitis. The bacteria reside within he endothelial cells which line blood vessels. The strange rashes that accompany the infection are a manifestation of inflamed blood vessels. Other causes of vasculitis (medical literature) may cause low grade fevers, night sweats and muscle abnormalities.
PET and SPECT scans may have limited value and be nonspecific. Results should be interpreted in this vane. Cerebral vasculitis may be a consideration.
No response: to Omnicef, Zithromax and Mepron. Additional clues that Lyme and Babesia may not be the most important players. Always start with doxycycline unless there is a compelling reason for not doing so. Doxy is a necessary component of the 3 drug regiment which killed Lyme in Dr. Zhang’s test tubes. It is perhaps the best anti-spirochete Lyme drug. Doxy treats numerous coinfections and doxy is very handy when 3 drug “cocktails” are concocted for Lyme patients. This patient had already experienced considerable relief from a doxy based cocktail before Rifampin was added.
Lyme is ever confusing and at times surprising. For me it is important to attempt to work out the mechanisms (pathophysiology) of symptoms in each patient which provides a basis for treatment going forward. Are my hypotheses correct? It provides me with a narrative. Of course I am only making educated guesses. Research one way or the other which could help us understand what is going on with this patient is not in the pre-contemplative stage. Nowhere near it.
Lyme is a tragic disease.The CDC admits there are at least 300,000 new cases a year. There are a lot more. Most cases are missed or misdiagnosed.
The manifestation of this chameleon diseases are protean. The disease threatens the premises which hold together the gestalt understanding of human disease. An acceptance of these mind bending notions would require serious revisions of uncountable chapters in medical textbooks.
In a sense this may be what the paradigm war is about. It is not about whether Lyme persists or how long patients should be treated etc. It is about a fundamental rethinking of disease with a new found appreciation of the contribution of microorganisms. This notion both daunting and scary.
Come, gather round people wherever you roam
And admit that the waters around you have grown
And accept it that soon you'll be drenched to the bone
If your time to you is worth saving
Then you'd better start swimming or you'll sink like a stone
For the times, they are a changing
Bob Dylan