Tuesday, March 31, 2015

Potential for new Lyme therapy: bursting the bubble.

A say the problem with Lyme is “6 old men”. I say this somewhat metaphorically. But a small group of older academic physicians developed a paradigm years ago and has continued to successfully convince the faithful. 

A current patient has been admitted to multiple hospitals. This suffering teenage female suffers with severe neurological signs and symptoms. I had the opportunity to speak with one of her hospital doctors, trained in both infectious diseases and immunology. He asked me why I thought the IDSA guidelines were wrong. He let me speak and he was a good listener as I waxed eloquently (or so I thought). At the end of my well-crafted diatribe he was entirely unconvinced. My patient, a young woman, suffering in the most horrific way has been bandied about from one hospital to the next. It seems each institution is more eager to get rid of her than the last. At the last hospital her mother was told, there are some patients that never get diagnosed. Lyme had well been treated with more than a month of Rocephin. It was something other than Lyme. Why do I think the IDSA is wrong?  The patient’s mother was challenged with same question and she gave her best lay explanation. When Mom read “Cure Unkown” she had an “Ah ha” moment and realized the disease is political and has now learned to save her breath. The IDSA is wrong because of history, politics and a paradigm war. Perhaps there has been a debate about the "science" as is oft said. I think the answer to this question can only really be explained contextually.

It is so brutally unfair that anguished parents fighting for their critically ill daughter are asked to take part in this fight.

This article published in the NYTs is very instructive in this regard. 

Stalking Dr. Steere Over Lyme Disease, By DAVID GRANN Published:   June 17, 2001

Although this piece was written 14 years ago, nothing, or very little has changed. Dr. Steere, a once virtuoso violinist whose career was cut short by a finger injury turned his focus to medicine. By serendipity Lyme fell into his lap and he has been a Moses of the field for the last 40 years. Comtempory medicine has no experience with a multisystem disease such as Lyme disease. The specialization of American medicine makes it more difficult for physicians to see recurring patterns of the disease. Patients instead are diagnosed with psychosomatic disease, fibromyalgia or chronic fatigue syndrome. It is fascinating that Dr. Steere says that chronic Lyme has become a garbage can diagnosis and that fibromyalgia is frequently the real answer.   Dr Steere tells the reporter: “there is no controversy amongst scientist.” The 6 old men and their cohorts live in a bubble, have lunch with each other and validate their beliefs: Lyme is easily treated with short courses of antibiotics. Their influence continues to have far reaching consequences leading to devastation for so many Lyme patients.

Personal attacks, such as in the case of Dr. Steere, have an effect opposite of that desired. The besieged only become defensive, clinging more tenaciously than before to their flawed system of belief.

Science is the best weapon we have. It is finally catching up.

Fourteen years later after this interview, when nothing seems to have changed, a study published a few days ago in PLOS one by Auwaerter, (Feng, Zhang) a stalwart “Steerite” leading the charge in the Lyme war against the Burrasconites, firmly contradicts the basis of the Steere hypothesis. 

In this study the Hopkins’ group admits the cause of ‘Post-Lyme” is uncertain. The idea that Lyme bacteria persist after 2-4 weeks of amoxicillin is “controversial” according to the authors of the study, who then proceed to provide clear, concise and convincing evidence that Borrelia burgdorferi, the Lyme agent,cannot in any world, possibly be killed by this recommended therapy.
The evidence is clear, there is no single drug is capable of eliminating Lyme persisters in mice, dogs, primates and humans -- or in a test tube.  There is no known combination of two drugs that can eliminate Lyme persisters.The authors have discovered a single combination of three drugs: daptomycin + cefoperazone + doxycycline  processing the unique ability to eliminate Lyme persisters in a test tube. This is a huge step forward. 

We may not be able to readily adopt this study for clinical purposes. Daptomycin is an extremely expensive drug and is currently reserved for the sickest hospitalized patients. Infectious disease physician's "stewardship" over antibiotics will likely be a roadblock against the use of this potent drug, and, third party payers, hiding behind the banner of FDA approval will likely not pay for it.  Cefoperazone I have tried to prescribe; pharmacists have told me it is not available.

Only a veritable nuclear bomb of antibiotics could kill all the Lyme in a test tube. Still, Dr. Auewater (at his other job), along with the coterie of Steerites  will continue to tell us the pea shooter therapy is all our patients should ever need. 

The young woman described above, in a wheelchair, delirious half the time, in incredible pain, diaphoretic, with apnea and with constant “pseudoseizures and lapses of consciousness whose blood tests show serological evidence of Lyme, Babesia and Anaplasmosis cannot be helped by science, only by the art of medicine based on years of learning and experience. The Steere camp has no answers but is quick to judge.

The nuclear option, if available, would have to used for care. For example, the patient above has severe Herxheimer reactions with low dose minocycline. Medicine will remain an art as well as a science for the foreseeable future.

New research at the test tube level with drugs such as Claritin and the "nuclear option" may prove to be helpful. Test tube science does not always translate into clinical cures but may certainly provide key, new evidence.

The study gives us another rock to throw at the edifice of the Steere - IDSA - CDC dogma.  It remains a David vs Goliath battle. For now, Lyme remains a political disease. We know the science, which are adversaries claim to hide behind, will prevail in the end.



Kurt said...

You mention Claritin here...is that a typo?

Arachnomama said...

No, there was a big study done showing that claritin could eradicate it but it had to be in ridiculously high doses in no way safe for human beings. Taking claritin won't do any good, and if you took enough to kill the bacteria you would probably die from an overdose. But its an interesting observation and maybe there's some useful info in the study.

Val said...

Four weeks of treatment makes me laugh. Does IDSA ever address the situation where Lyme is allowed to percolate for 25 years before treatment? I spent 26 months on Rocephin IV along with other meds. I'm quite well now but I gave up 30 years of my life because that first doc who said, "I think you have Lyme," never treated me.