Not your father's Lyme disease

Lone star ticks, (Amblyoma americanum). are taking over. They now comprise more than 80% of the small black legged, hard bodied ticks found in the D.C metro area and elsewhere. These guys are very aggressive. They may be hard to distinguish from their deer tick (Ixodes scapularis) colleagues. Adult females are easy to spot: white spot on top. The shape and coloration is somewhat different. Take a careful look with a magnifying glass and compare to pix on google images. The CDC party line is: Lone stars do not transmit Lyme; they transmit STARI which is a mild disease and easy to treat. The CDC website states it is unknown wich bacteria causes the syndrome. The CDC website says Borrelia lonstari was a suspect but “further research” showed this not to be the case. This “definitive” research is the product of a small study published by Gary Wormser (name familiar) in 2005. Thirty EM rashes were examined for B. burdorferi (classic Lyme) and B. lonestari. Wormser did not find the genetic signature of B. burgdorferi or B. lonstari (or any Borrelia species) Therefore, the case is closed. Incidentally, all cases were from the Cape Girardeau are of Missouri (along the Mississippi river). I leave it to the reader to make sense of this research.  It is said that an inhibitor in lone star tick saliva makes them an inhospitable host for B. burdorferi. Perhaps. Nonethess, multiple studies have shown that B. burdorferi can be found in lone stars.  A patient in my practice with PCR (blood) proven B. lonestari was amongst the sickest patients I have seen. The only lab that I know of that does this test is Clongen. What about Western Blots? This patient was negative except for band 41 at two reference labs.

The Western Blot (as we currently know it) may soon be obsolete as the mix of Borrelia pathogens changes. Clongen found many Babesia organisms in these ticks, species unknown. Laboratory testing for unknown species of Babesia is impossible, except for fresh, properly stained blood smears. Bartonella is already a complete mystery: I say no more here.

Diverse ticks (Ixodes species) around the globe are known to transmit Borrelia species causing a Lyme-like illness, referred to as Borrelia burgdorferi sensu lato. Rapid changes are occurring in the US. The spirochetes live in an expanded reservoir, beyond white footed mice; the species are different; the strains are different and of course the vectors are different.

The coinfections are different and may be complete unknowns.

Here are a few clues: Ehrichia antibodies equal lone star tick. Only Anaplasma in deer ticks. RMSF antibodies show up a lot. I am not sure what this means. Cross reacting Rickettsia sp?  RMSF occurs only in lone stars not deer ticks. Meat allergies (anti-gal) only from lone stars: can be devastating.

The Lyme disease and associated tickborne pathogens paradigm is changing dramatically and very quickly. Be cognizant as we move forward.

A 70 year old man with a decade of night sweats, neuropathy and elevated muscle enzymes

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