The IDSA perspective, as I see it.

Nothing has changed in the war about Lyme disease.

Lyme disease means different things.   To the IDSA it means acute Lyme disease, the only kind that matters.  To others, including many of my readers, Lyme generically refers to a chronic illness with diverse and unpredictable clinical features associated with tickborne infection, including Borrelia of many potential species (sometimes multiple species or strains), causing borreliosis and typically other tickborne infections, most commonly forms of babesiosis and bartonellosis, causing a chronic illness, the totality of which exceeds the sum of the parts.  

Mainstream medicine, in some cases, begrudgingly, admits to the existence of something called post treatment Lyme disease syndrome, PTLDS.  This is not the second version Lyme disease described above. The term (as used by the IDSA, CDC, mainstream medicine) narrowly refers to patients with clearly defined acute Lyme who were treated with the standard course of antibiotics, generally 3 weeks of doxycycline, and who despite “adequate” therapy went on to develop chronic, vague symptoms.  There is no effective treatment or cure associated with this syndrome. Specifically, long-term antibiotics are not effective and rather poses a significant risk to patients. In addition, if patients do not develop 5/10 positive IgG bands on the 1994 surveillance test, the patient most likely never had Lyme in the first place and therefore the diagnosis was incorrect and the use of long-term antibiotics egregious. 

IDSA experts have angrily disparaged alternative therapies for “Lyme” and have published tirades in prestigious medical journals.  These doctors are not bad doctors. Infectious disease doctors are good at what they do (for the most part).  When a patient in the ICU has sepsis due to Serratia marcescens or Listeria, they know what to do.  When a patient has a life-threatening wound caused by a strange bacterium in the Chesapeake Bay, Mycobacterium or Vibrio species, they are on top of the case. They know how to manage an HIV/AIDS patient with a life threatening systemic yeast infection. This is their Bailiwick. 

The infectious disease specialist are unfamiliar with multisystem diseases. Such illnesses may fall within the purview of rheumatologist, maybe -- but again, such disorders are narrowly described and defined by colleagues in rheumatology who handily dismiss the notion. The patients are given the same treatment by neurologists.  The patients do not easily fit into box A or B and end up with wrong diagnoses such as fibromyalgia or chronic fatigue syndrome. Most patients are dismissed as having a psychiatric disorder and are rudely dismissed, leaving the consultant's office in tears. 

Lyme disease, chronic Lyme, Lyme with coinfections, other iterations as understood in one community, is an entirely differently entity than Lyme defined and understood by the IDSA et al.  Two different paradigms, two different diseases. 

Infectious disease doctor view Lyme and it associated diseases as a germ disorder.  Lyme doctors see a whole person with dysfunction of organ systems and a plethora of symptoms with connections to chronic infection such as Lyme. 

In "camp other", Lyme is associated with:  impairments in immune function, poorly understood autoimmune phenomena, brain dysfunction and inflammation, endocrine dysfunction and many others. Much, much more than a germ only disease. A series of dominos fall each with its peculiar, attendant dysfunction -- hard to put back together -- with treatment requiring, intelligence, an expansive fund of knowledge, intellectual curiosity, empathy for suffering and creativity. 

The IDSA doctors, as a whole, lack the ability to give consideration to the thesis that their ideas may be wrong, or at least partially wrong.

“Imagination is more important than knowledge. For knowledge is limited to all we now know and understand, while imagination embraces the entire world, and all there ever will be to know and understand.”          Albert Einstein

IDSA doctors don’t get the alternative thinking view of the disease even a little. It is too “fuzzy.”  Not in the clearly organized box which make up their medical universe of constructs and ideas. 

Doctors are instructed not to think outside the box. In fact, doctors are discouraged from doing so. This was not always the case. 

Doctors are taught to practice evidence based medicine.  Clinical medicine should be practiced guided by the best available evidence. In theory it sounds good. 

It doesn’t work when there are two schools of thought about a disease and the one school, with strongly held beliefs about the essential nature of the illness, is able to force its views on patients and physicians who have different beliefs and different experiences. 

Who are the deciders?  Who decides: how a disease is defined, its scope of clinical manifestations – its spectrum, the role of laboratory testing, which evidence should be included in the process of critical appraisal and what the evidence means?

When apples are repeatedly compared with oranges, nothing will ever get straightened out. 

Lyme: new and emerging directions for research and treatment

Treating (chronic – complex) Lyme is not a cake walk. Patients are looking for the holy grail.  Caveat emptor - Let the buyer beware.  If it sounds too good to be true it probably is.  Many patients are paying huge sums of money for therapies that are ineffective and unproved, at best.  It is also hard for many patients to place in proper perspective scientific research papers.

A recent study used “high-throughpoint” screening, searching for new drugs for Lyme.  The researchers considered killing both growing spirochete and persister variants.  Some of the most effective agents are chemotherapy drugs.  These drugs are toxic and dangerous. I think taking these drugs for Lyme is unwise.  Many cephalosporins were found useful.  Interestingly, some first-generation drugs work. I was under the incorrect assumption that only second and third generation cephalosporins were effective.  Most of the drugs are IV, administered 4-6 times per day.  Azlocillin sounds promising but is not available in US.  Eyrthomycin is said to be effective – no true in my experience. Zyvox is said to be highly effective. This I believe. It is available orally and IV.  Its price is prohibitive. This a very big gun, used to treat multidrug resistant bacteria. Not first line therapy.  The quinolone Avelox worked very well, inhibiting stationary and growing forms of Lyme. The study suggests that Avelox does it all.  Quinolones are potentially toxic and can cause tendon ruptures. Currently this class is not first line therapy. 

Then there is Antabuse?  Some recovering alcoholics take it daily.  If the patient slips up and takes a drink, the drug induces severe vomiting.  It is generally safe and well tolerated, requiring some lab monitoring. It may has potential as a therapy but is completely untested, even in a mouse.  Currently this is not a recommended therapy.

The cephalosporin Claforan which was extremely effective, 99.9% killing in a test tube.  It may surpass its competitor Rocephin.  The drawback is the drug is dosed 4X per day.  Maybe a less cumbersome regimen will be effective. 

Another recent study found something else. The statin drugs, cholesterol lowering drugs decreased the load of Lyme spirochetes (in mice).  The drug inhibits an enzyme needed in the formation of peptidoglycan, an essential component of cell integrity.  The same pathway is found in other pathogenic bacteria, including Staph, Strep and Listeria. 

Should we all go on statins?  Cardiologist think we should.  This begs the question:  is it good or bad for the brain to lower cholesterol?  About 25% of the body’s cholesterol is in the brain.  Cholesterol is an essential component of the thick white, insulating coating covering the axons  (myelin) – the white matter of the brain.  Perhaps lowering cholesterol is bad for the brain.  Studies are conflicted as to whether statin drugs (Lipitor etc.) increase the incidence of dementia/Alzheimer or decreases the risk of dementia/Alzheimer’s.  The current belief is the risk of dementia is less. 

Your neurons are completely myelinated by the teen age years. There is some dynamic remodeling that occurs during adulthood, therefore MRI white spots – damage to myelin may improve over time.  Studies have shown that statins decrease CRP and inflammatory cytokines which may aggravate brain inflammation. Statins may have anti-inflammatory effects in the brain.  After reviewing some literature, I think it is safe to take statins when you have “Lyme brain.”  The drugs reduce spirochete loads in mice. Whether it works in humans will be uncovered in future research which may be decades out. This is not a primary treatment for Lyme disease.

Most patients do not have a scientific background.  Many have learned the hard way.  IV ozone, magic inhalation therapy and stem cell transplant procedures are not going to cure you.  Maybe they help, maybe they don’t. A few of my patients have spent many thousands and tens of thousands of dollars discovering results fall short of the hype.  Treating chronic Lyme, in its worst forms is a process, a marathon, not a sprint.

Another antibiotic touted for chronic Lyme is the anti-Leprosy drug Dapsone.  It may have more toxicity than other choices. 

Anti-tuberculosis are also being promoted.  The TB drug Rifampin is already widely used.  Dr. Horowitz reports success with Pyrazinamide. This is the famous anti-persister drug used in active TB. The drug was tested in mice originally. Test tube screening was omitted in the 1950s at the time of development. When the drug was eventually tried in a test tube it did not work!  Based on screening procedures today, the anti-persister drug would have never been discovered. What else are we missing?  PZA is an indispensable drug for TB.  There is no evidence that it will be effective in Lyme disease. The mechanism of PZA is dependent on an enzyme only known to exist in Mycobacteria (genus of TB).   It has the potential for liver toxicity.

Is there anything new to try?  There is always something new to try.  Let's find what works best for you.