I am relaying the consensus of expert opinion. Your personal attacks do nothing to counter the facts. The only thing it accomplishes is to make you look foolish and contribute to the impression that the chronic Lyme subculture is not rational or evidence-based.

JPS – the last statement applies to you as well. The evidence is what it is, whether or not I have personally suffered from Lyme disease.

(basically blaming the condition on the patient and their fashionable hypochondriac Google driven search for relief) How is it possible the rest of the worlds researchers and scientists could be so wrong and you could be so right? You have no qualification or understanding of vector born diseases as you mainly utilize Botox as the cure all of your own practice. I really wish I could word my reply without resorting to name calling or bashing but science is science and you obviously have little understanding of what it means to be ethical in your approach of anything you disagree with.

Was Chronic Lyme an imaginary disorder with somewhat cult-like devotees who blamed it from an inability to balance one’s checkbook to failure to find lasting love? Or was it something that was difficult to either prove or disprove, whose sufferers and imagined-sufferers tended to the hysterical, thereby making physicians skeptical? Was this group being preyed on by a fringe-element bunch of practitioners, or undertreated because of conspiring pseudo-researchers and insurance companies who didn’t want to pay for PICC lines and months if not years of Rocephin and ever-more-exotic and expensive antibiotics?

I’m sure the truth is somewhere in between, but I’ve seen what SEEM to be credible writings on the capacity of the Lyme spirochete to encapsulate and thereby resist Rocephin, the biggest-gun antibiotic usually used, to infiltrate the blood-brain barrier where many antibiotics don’t, so well, and to go dormant and resurface.

Assuming these things are all true, I still think there’s a fair amount of hysteria about Lyme. I’m not convinced any of my “symptoms” (sore knee and forgetfulness) were caused by Lyme, or that my 30 days of IV Rocephin made any difference. I suspect every hiking dog in endemic areas has Lyme, yet the consensus among vets seems to be that dogs they rarely have symptoms. I’m guessing this is because dogs, with the notable exception of my chihuahua, are not prone to hysteria.

I’d appreciate comments from you, Dr. Novella and cmsjr, on this. Thanks muchly.

I am a big fan of the Skeptics Guide to the Universe. But I had a few questions about this blog posting.

You state that: “Finally, there are antibiotics to which B. burgdorferi is sensitive, and if treated aggressively and long enough should eradicate the infection.”

Why do you say “should”? As opposed to “will”? It seems that you are not confident that the scientific evidence establishes that antibiotics will always eradicate the infection.

For example, I refer to the following:

Bayer ME and Zhang L, Bayer MH (1996). “Borrelia burgdorferi DNA in the urine of treated patients with chronic Lyme disease symptoms. A PCR study of 97 cases”. Infection 24 (5): 347–353. doi:10.1007/BF01716077. PMID 8923044.

Preac-Mursic V, Weber K, Pfister HW, et al (1989). “Survival of Borrelia burgdorferi in antibiotically treated patients with Lyme borreliosis”. Infection 17 (6): 355–359. doi:10.1007/BF01645543. PMID 2613324.

Oksi J, Marjamaki M, Nikoskelainen J, and Viljanen MK (1999). “Borrelia burgdorferi detected by culture and PCR in clinical relapse of disseminated Lyme borreliosis”. Ann Med 31 (3): 225–232. doi:10.3109/07853899909115982. PMID 10442678.

In light of these (and many other) published references to continued infection in antibiotically treated patients (proven by PCR and other objective means), how can you confidently assert the following in response to Dhmspector (or other patients experiencing continuing problems from a lyme infection):

“What you have now is not chronic lyme (meaning a chronic persistent active infection) but chronic neurological sequella to a prior lyme infection. In other words, the infection is gone but the damage is done, and so there are lingering symptoms of the damage.”

Clearly, this COULD be the case, for some patients or all patients hit with lyme that are experiencing continued symptoms. However, what scientific evidence establishes (beyond reasonable question) that this is in fact the case – for all patients experiencing continuing problems? Isn’t it equally plausible – given the scientific evidence of continued infection despite antibiotic treatment in some patients — that continued infection is causing the problem? Isn’t this a problem science hasn’t really figured out yet – so that bold pronouncements are unwarranted and potentially dangerous?

One could cite the studies regarding lack of efficacy of long-term antibiotics for your position. However – and without getting into the merits of those studies — one cannot definitively tie lack of efficacy of antibiotic treatment to lack of presence of the organism. Simply because there could be other reasons for lack of efficacy of the treatment – including failure to completely eliminate the infection. This is rather starkly demonstrated by the above cited articles (and many others showing the same thing).

Chronic lyme puts neurologists and ID doctors in a bind – it’s a tough thing to treat and diagnose because of the non-specific nature of the symptoms and the limitations of the testing (e.g., published articles have identified infection through PCR and other means in serologically negative patients). Also, the treatment has serious issues.

But the science is the science – and I don’t see how there is a scientific basis for the conclusion that antibiotics will in fact always eliminate the infection – which I presume is why you use the fudge word “should” eliminate, as opposed to “will” eliminate.

Thanks for the clarification – I think my main point is that Lyme specifically is a much more subtle disease than is commonly acknowledged and is actually under-diagnosed because it’s so easily missed/mis-diagnosed.

On the larger point of the existence of Chronic Lyme, as a software engineer who looks at almost every problem from a “systems viewpoint,” I think that doctors need to have better tools to track patient complaints/symptoms and have software that triggers/suggests things to look for (sort of an up-to-date version of the early expert system MYCIN).

With the number of patients an average doctor sees and the long-delay between seemingly isolated events that could in fact be the outline of a bigger problem, there is no way any physician can keep track of all that information for every patient in their heads. Having better automatic analysis of patient records and diagnostic cues may help transform “Chronic Lyme” into other diagnoses for concrete diseases that can be actually treated…

I think that if my GP had had such a system I might have been tested for Lyme a year earlier and not have had to go though such a painful experience. Similarly, for those with what they perceive to be “Chronic Lyme” might have had a different experience if their symptoms had been better tracked and correlated over time…

Thanks for the comment. Actually what you are describing is a fairly typical case of neurolyme, minus the rash. You had a Bell’s palsy (I have personally never seen a case of neurolyme without a Bell’s), you had a positive serological test (ELISA and western blot), and you responded to antibiotics. This is very different from the pseudo-chronic lyme I was talking about in which the clinical case is atypical, the serology is negative, an there is no or only temporary response to antibiotics.

What you have now is not chronic lyme (meaning a chronic persistent active infection) but chronic neurological sequella to a prior lyme infection. In other words, the infection is gone but the damage is done, and so there are lingering symptoms of the damage. Usually nerves will recover, but to a variable degree, and if the original infection was severe there can be permanent symptoms.

I hope this clarifies things.

I’m not one of the “chronic lyme” believers although I had a very nasty case of it over 2 yrs ago when I was 42. I am not sure that Lyme is a disease that either as easily diagnosed or as easily treated as one might think. Lyme, if you don’t get the bulls-eye can behave like all sorts of garden variety aliments: A touch of the flu, some joint pain that acts a lot like carpal tunnel or other repetitive-stress injuries, a sinus infection… unless you’re specifically looking for it, it can hide out until you have an experience like the one I had:

I never got the classic bulls-eye rash, I never knew I had been infected. I got what I thought was, and looked like, a sinus infection – my GP prescribed a course of antibiotics. After several days when the symptoms didn’t start to get better, I went back in, we changed antibiotics, the next day I started to go numb on the left side of my face… back to the GPs office where and in my case, things took a sudden scary turn as my blood pressure was up through the ceiling (from 120/70 to 210/100 in 18 hrs)… they put my on beta blockers immediately and sent me for an immediate MRI to make sure I wasn’t stroking. No signs of a stroke.

The next day my GP spent the day reviewing all my records for the previous two years and suggested the Alyssa and Western Blot be performed to see if I had Lyme (as well as tests for Erchliosis and Babesiosis). When the tests came back the Lyme titer was off the charts plus an added bonus of Erchliosis just to make things interesting.

It took 4 30-day courses (with testing after each course) of doxycyclin to knock out the Lyme and the Erchliosis; the Bell’s Palsy was scary, and the Trigeminal Neuralgia and joint paint were unbelievably painful.

Now, almost 2-1/2 yrs on I still am partially paralyzed from the Bell’s, and cold weather plays havoc with my joints. Since I live on Long Island (as you know being from CT, another Lyme hot-spot) and am outdoors a lot, and even though I practically make love to my spray-bottles of DEET, I have myself tested twice a year to make sure I haven’t gotten re-infected.

The bottom line is that there may not be any such thing as “Chronic Lyme Disease” but Lyme is 1) Easily contracted; 2) Easily misdiagnosed – between 40%-60% of people eventually diagnosed with Lyme never get or see the bulls-eye rash; 3) Carried by more than just the deer tick; and 4) Can lie hidden for quite a while before those little spirochetes chew on enough of your various nerve tissues to damn near kill you.

Moral of the story: anyone living in Lyme prone areas who spends time outdoors should have themselves periodically tested for both Lyme and the other common tick-borne diseases (like STARI, Erlichiosis, and babesiosis).

Regarding “tertiary syphilis”, I remember that I’ve been somewhat surprised by the number of famous historical people who were claimed to have suffered or died from “syphilis”. Not that I have kept statistics or something, lol. It’s just that it is linked to sexual promiscuity I guess, and biographers or websites with biographies are eager to point out that a historical figure was linked to it.

Do you think it is likely that this was caused by the type of popular fake diagnosis you mentioned? I.e. most of these people were diagnosed with “tertiary” syphilis and not necessarily the other, more easily identifiable type/stage?