Lyme disease and Sherlock Holmes: facts precede theory

Lyme patients, suffering with chronic fatigue, chronic pain, cognitive difficulties seek medical care through “the system.” Where else would you go?  

More often than not, the doctors, the healers? dismiss patient symptoms and concerns, the tears and misery,  not looking up from the omnipresent computer screen saying it’s all in their head, without emotion, without a single iota of compassion or empathy.  

Patients seek validation, but it is not to be found as the physician scribbles a referral for a psych eval as he calls "nurse" and moves to the next exam room. 

The healer is gone, replace by an evidenced-based robotic technician.

A 30-year-old former military officer complains of: severe fatigue, generalized pain, weakness, brain fog, “strange symptoms,” and bouts of presyncope (almost passing out) leading to ER visits was told by one doctor he suffers with a psychosomatic disorder. He lives in a wooded area; favorite activities including running through the woods with his 3 dogs (none treated for ticks), hiking, camping and running. He trained in Quantico VA, crawling through tall grasses and wooded areas 7 years ago.  Doctor after doctor after doctor found nothing wrong, and all reassured him that he did not have Lyme -- because the standard test was negative. 

A 62-year-old female has been diagnosed with longstanding, severe fibromyalgia. She is plagued by allodynia (touching skin excruciating) and she exhibits diffuse, paired tender spots: neck, trapezius, interscapular, paraspinal, SI, chest wall, anterior shoulders, above elbows and knees, anserine bursa area, ankles, heels, shins and other. There is no evidence of joint inflammation, swelling, warmth or redness. (Classic findings of fibromyalgia). Her rheumatologist diagnosed post-Lyme arthritis and wants to prescribe Zeljanz. The patient didn’t even know the drug is an immune suppressing biological until I told her.  In this case a rural rheumatologist accepted a non-CDC interpretation of a Lyme test.  

Sherlock Holmes was a very smart guy (physician author, Arthur Conan Doyle). Paraphrased, he said:  you must collect all the data before formulating a theory; if you start with theory you will twist the facts, to comport with your theory. The theory (therefore conclusions) will be severely biased. Roughly what he said. 

If you start with theory, the foregone conclusion really that Lyme is rare, presents classically doesn’t persist etc. (IDSA theory), you dismiss, distort or spin the facts, crucial facts -- like crawling through grass and woods surrounding Quantico VA, camping, hiking and hunting. If you start with an open mind, collect the facts and process them, a different theory clearly emerges: patient one is suffering with manifestations of Lyme. 

The theories or hypotheses must fit the facts. Doctors must start with a reasonable fund of knowledge. I think patient 2 was diagnosed with posttreatment Lyme disease syndrome.  OK. Maybe.  However, the diagnosis of post-Lyme arthritis and the recommendation of Zeljanz can only come from a place of creative ignorance.  Perhaps attractive drug reps are leaving samples. The dangerous drug goes for more than 2000.00 dollars a month. 

Lyme disease complex -- our understanding of the disease nascent, a work in progress. Different practitioners are finding different ways of understanding the disease guided by differing philosophies, belief systems and so on.  A work in progress. 

Chronic Lyme disease is what I have been chasing all these years. 

How do I define chronic Lyme disease:

Lyme disease is a chronic, complex, (usually) multisystem disorder characterized by an intense inflammatory response causing a wide spectrum of symptoms and syndromes, associated with persistence of the causative microorganisms (Borrelia species), frequently in conjunction with other opportunistic microbes (co-infections) which also tend to persist.  Something like that. 

How do we define posttreatment Lyme disease syndrome?

Perhaps we need to return to the wisdom of the late 19^th century detective.  It has the same definition. It is really the same thing except the afflicted patient has treated with a formulaic course of antibiotics which proved ineffective.  Bending over backwards, to compromise with the Lyme deniers may admittedly be destined to fail.  Is it a workable bridge or a bridge to nowhere?  The designation of PTLDS may have a dark side if used as a justification for prescription of dangerous biologicals. The facts are the facts.  Facts must precede theory. Evidenced based guidelines (IDSA) start with entrenched theories; facts are twisted to the breaking point in support of deeply flawed beliefs which are severely biased – at the very least.  It is elementary my dear…

Why do 40 doctors still get it wrong? Isn't the science clear?

A 50-year male, an academic, a PhD in biology came to see me, somewhat reluctantly. I was a last resort, an afterthought. He was suffering with a disabling mix of symptoms: headaches, joint pain, pins and needles, overall weakness, fatigue, fevers, night sweats and trouble thinking clearly. He still worked 5 days a week, thankfully a government job, something he knew inside and out. He still struggled to get through the day crashing on the sofa the moment he got home. The guy lives in a wooded area of Prince George’s County MD around the DC beltway. Deer camp in his back yard. He  previously prided himself in his athletic prowess, doing motor cross and competitive downhill skiing. He spent hours in the back yard, gardening and clearing brush. Chopping wood for the fireplace. Sports were a distant memory now. He had seen by 40 or so doctors, some of the best he thought. University professors and the like. No diagnosis could be made. It was suggested it was psychosomatic and he needed to see a psychiatrist.  Sure, he felt depressed and considered the diagnosis, but he knew that wasn’t it. He admits to epic tick exposure, 25 ticks on his body yearly for more than 10 years. He found a few attached ticks but thought he always remove them early. He had no history of a bull’s eye rash or other known Lyme symptom – he thought, at least that is what the books and reliable sources said.  His doctors said he most certainly did not have Lyme disease. 

To my way of thinking the likelihood of tickborne illness approached 100%.  Maybe he removed most ticks, but it is almost certain he missed some.  Larval and nymph forms are stealthy and sometimes impossible to find.  And – what else could cause that particular mix of symptoms? 

His Lyme tests were negative.  I repeated his Western Blot; it was clearly negative.  Tickborne testing was negative except the blood Giemsa slide which showed parasites inside his red blood cells. 

There is much talk about how long ticks need to be attached to transmit Lyme. Its an open question. I haven’t heard any discussion about how long it takes to transmit Babesia. Nonetheless, I thought it was unlikely that Babesia was responsible for most of his symptoms.  Lyme must be there as well and perhaps other coinfections. 

Doctors today are not taught to think and solve complex clinical problems and may worse, risk penalty if they dare do so. Docs are taught cookbook guidelines. “Medicine for Dummies.” Dogma states: Lyme patients always get rashes and are positive by the ELISA/Western Blot. Science informs that many patients do not get rashes, and many are “seronegative.” Undisputed fact. Why are doctors fed bad facts? ID doctors clearly have an agenda when it comes to Lyme disease. 

Guidelines are specialty driven.  ID doctors think about germs, cardiologist hearts, nephrologists kidneys and so on. Medicine is divided into various narrowly focused specialties. 

Primary care doctors should be the ones to put things together, integrate all the reports and data. But they are too busy or scared.  This is crazy.  

I am speaking from an allopathic perspective, fact based, and science based (my perspective).  An integrative, holistic approach must look at the interplay of genetic, environmental and psychosocial factors and the complex interplay amongst the various organ systems and “virtual” organ systems, the most important of which is the immune system. Germs are now and always have been the most important environmental factor associated with human disease. 

Infection has an established role in cardiovascular disease and cancer. Infection plays a role in autoimmune disease and perhaps much more. 

Science describes new and emerging multisystem diseases:  dysautonomia, mast cell activation syndromes and others for which there is scientific understanding.  Their existence is settled science. 

Elusive syndromes such as fibromyalgia, CFS, migraines are partially understood scientifically. There existence settled science. 

And posttreatment Lyme disease syndrome, a valid, across the board accepted diagnosis, of which a lot has been written is settled science diagnosis. 

From a mainstream medical perspective, the most likely diagnosis should be posttreatment Lyme disease syndrome. The cause of the disease (PTLDS), according to authorities is not understood. 

Why isn’t Lyme the most likely diagnosis?

Come on. 

Politics? Willful misdirection on the part of the mentors and supposed experts? IDSA?

There are likely many conflicts of interests and the fog of a paradigm war clouds the truth – not to mention hubris with reputations and careers on the line. 

The academic world, no matter the field, is fraught with politics and political correctness. In medicine lives are on the line. The culture of guru – ism is outdated and dangerous. 

The ID agenda must be exposed and squelched. 

When you open the door to PTLDS you open the door to chronic Lyme disease. (Cause unknown). The spirochetes persist in test tubes and animals – and humans. If this is true (it is), perhaps the persistence of coinfection is also true. The science suggests a reasonable theory is persistent infection plays a significant role in the perpetuation of  PTLDS.   Lyme is a multisystem, immune suppressing disease. An understanding of immune mechanisms further supports the hypothesis. Opportunistic infection makes sense. 

Empiric evidence should not be ignored.  Empiricism is a time honored source of data in medicine. 

Physicians are allowed discretion. Yes, they are. Evidence based medicine as described in UpToDate admits to biases and limitations and allows for discretionary use of its findings and recommendations.  The IDSA admits only 20% of their guidelines are based on high level evidence; their guidelines in general are largely opinion driven. The IDSA states guidelines are recommendations only and do not dictate gospel. How did these guidelines become gospel, the word of God?

There is a turf issue at play.  Specialists want to maintain control over their slice of the pie. But specialists are unable to look at the whole pie.  Only thoughtful generalists (or others with that perspective) can take in the depth and breadth of the entire pie can do so.  The pie only gets larger and more complex with each passing year. 

An allopathic, fact based, common sense based, and science-based understanding of Lyme and related infections ultimately leads to an ILADS’s -type understanding of the illness. It is inevitable. All roads lead to Rome. The logic and science are unassailable. 

It shouldn’t have taken over 40 doctors. Hundreds of tick bites? Specialty driven biases blocked the obvious answer at every step. A system of checks and balances is absent. 

The diagnosis may not be 100% clear or certain. A working diagnosis is a place to start. 

The outstanding question should relate to appropriate therapy. How do you treat chronic Lyme and coinfections, or specifically, how do you treat this patient?

The best place to look for answers is doctors like me who have been treating the disease for years and decades. 

Treating Lyme, 2019, a brief overview: The more things change the more things remain the same ( Plus ça change, plus c'est la même chose)

Things are changing slowly.

My paradigm for treating Lyme is in constant flux.  Lyme is in general, a systemic, multisystem disorder characterized by widespread inflammation. I try to understand the underlying cause of inflammation. Inflammation is due to an immune response which may be appropriate, inappropriate and/or autoimmune.  Mast cell activation (MCAS), for example, is an example of inappropriate immune response/inflammation which may be triggered by infection.  Germ persistence is a key factor. But related autoimmunity is important. For example, Lyme may trigger rheumatoid arthritis – or something that looks like it.  We know that other factors that incite systemic autoimmune responses, for example, gluten in susceptible patients may exacerbate symptoms of Lyme.. A variety of other autoimmune manifestations need be considered, for example, PANS (PANDAS) causing autoimmune encephalitis. Consider POTS, another multisystem disorder which can look like Lyme. Underlying genetic, somatic disorders may contribute to symptoms, for example, Ehlers Danlos syndrome, a connective tissue disorder. 

Following “Sutton’s Law” I try to go where the money is.  I treat symptoms, like disturbed sleep and fatigue. Increasing functionality is key to restoring quality of life. I focus on: Lyme, coinfections, inflammation, genetic disorders and symptoms. Nutritional issues are important.  I put aside: viral infection, heavy metal toxicity, mold toxins and other confounding issues that seem popular. (Antiviral meds can be very helpful). I put aside “adrenal fatigue.” Universally, chronically ill patients and Lyme patients develop adrenal dysfunction. This will usually fix itself when the underlying disease is treated, and treatment can backfire. Thyroid disease/dysfunction is another matter and must be treated. The role of epigenetics is unclear and not something I focus on early in treatment.  The notion that antibiotics alone will fix everything is incorrect. 

The antibiotics, antimicrobials mentioned are examples and not recommendations. Only a treating physician can decide what might be appropriate. Choice of antibiotics is driven by symptoms.  Lyme” coverage” is always present, if at a lower intensity.  If Lyme is the main driver of symptoms a cocktail of 3 drugs may be used.  Doxycycline, Rifampin and Tindamax is an example of a 3-drug cocktail – there are many others.  When rifampin is used Bartonella Herxheimer reactions may appear and may be severe.  If Bartonella is the primary target a cocktail of Zithromax or Biaxin, doxycycline and Rifampin may be used – and others.  If Babesia is the main issue a Cocktail of Zithromax, Mepron and doxycycline and others may be considered. Depending on the patient, one drug may be added, incrementally, every 3-4 days. The meds listed are exemplary.  Details including dosages and management of Herxheimer reactions is beyond the scope of this brief post. Transition from one therapy to another also not discussed here.  In some situations, for example, acute Lyme encephalopathy, IV Rocephin is used out of the gate. Rocephin remains the first line of intravenous therapy. I use continuous rather than pulse therapy. When a patient improves, I transition to pulse therapy and fewer antibiotics. Drugs like Dapsone may have a role impacted Babesia and Lyme. There are many other antibiotics and antibiotic combinations not mentioned here. 

Every patient is different and requires a unique treatment plan.  There are no "protocols."

Co-morbidities (other diseases, syndromes) are addressed.  Antibiotics don’t fix everything. 

Insomnia is treated with a variety of agents, e.g.: doxepin, Restoril, Seroquel, etc – whatever it takes. I routinely order sleep studies.  Sleep disorders including sleep apnea are common accompaniments of Lyme. I am frequently surprised to meet patients with 10 years or more of chronic fatigue who have never had a sleep study. 

Fatigue can frequently be effectively treated with drugs such as Nuvigil and others. 

Depression and pain must be treated.  I put the two together because some of the therapies dovetail.  Patients may tolerate various antidepressants in a way I cannot predict.  Some patients are on SSRI, e.g. Lexapro. The patient may not tolerate Cymbalta which is effective for pain. A very low dose of amitriptyline, e.g. 10 mg 1-3 daily can confer to the SSRI the pain modulating properties of Cymbalta without amitriptyline side effects. Gabapentin is indispensable. Muscle relaxers like Zanaflex or Flexeril, when dosed properly can be very effective.  Ketamine, effective for pain and depression is the drug of the future, already in use. There are numerous other approaches. 

Brain fog, cognitive impairment can be treated in part with supplements and prescription drugs like Namenda. 

Inflammation can be treated with supplements like curcumin e.g Theracurmin and Wobenzym, etc.  Rarely short courses of steroids and/or other immune modulators like Plaquenil and biologics may be considered. 

Adjunctive therapies may be very helpful, e.g. hyperbaric oxygen therapy, saunas, and perhaps EMF therapy. 

Ultimately, graded exercise is important. 

Treatment must be paced.  Herxheimer reactions must be heeded.   

We must exclude: immune deficiency disorders, e.g. low IgG and subclasses (IVIG may be very helpful); mast cell disorders; nutritional disorders; autoimmune disorders, e.g. thyroid disease and pernicious anemia and many other medical disorders.  A problem list is created for each symptom.  A differential diagnosis list is attached to each symptom to be revisited if needed.

When a therapy doesn’t work as expected the treatment and/or diagnosis must be reconsidered. 

To summarize:  Aggressive, frequently 3 agent therapy required. Treat other syndromes which may be present. Treat symptoms. Increase function and quality of life.  Address the most likely causes of illness. 

I do things differently from some of my colleagues.  I incorporate many mainstream medical therapies, practices (baby and bathwater).  This treatment approach has been very effective.

The approach is science based, allopathic but translational, incorporating new ideas, theories and clinical therapies. I try to keep things focused and simple (it is obviously quite complicated). 

The above represents opinions of the author, presented for educational purposes only and not intended for any clinical purposes, including the diagnosis or treatment of any patient.