Monday, November 7, 2016

Lyme disease tests: New and Old


Diagnostic testing



Testing may be difficult when the standard diagnostic test fails. The gold standard, the identification of the organism by DNA or culture is frequently not feasible or available. Several antibody tests have been developed which may be helpful, but these tests have a low sensitivity, missing many cases. As an adjunct, a newer technology involves lymphocyte stimulation.  When cells (T lymphocytes) are exposed to proteins derived from the pathogen, cell mediated responses such as the release of gamma interferon can be measured indicating prior exposure to the pathogen. This test may have limitations and likely should only be used adjunctively.
Of course, we are talking about diagnostic procedures for Mycobacterium (tuberculosis).
Let’s talk about Lyme.

Testing for Lyme remains problematic.  Tests have been inaccurate, unreliable and at times prohibitively expensive. 
We depend on clinical diagnosis. But sometimes we are not sure.
All currently available tests have pros and cons.
A lot of labs are suddenly getting into the Lyme testing business.  Many tests are in development.
The Western Blot remains the first line test.  It is important that a Western Blot be ordered, not just an ELISA with reflex to Western Blot. The ELISA is not dependable. An alternative ELISA, the C6 peptide may be ordered, occasionally it is positive and is highly specific.   A C6 from LabCorp/Quest is not adequate, a numerical value, available from various reference laboratories is needed. (MDL, IgeneX, many others)
PCR (polymerase chain reaction) is a test which measures the presence of specific DNA.  Most consider this the gold standard.  Unfortunately, when it comes to Lyme it doesn’t work as well as it does on all the crime - detective TV shows.  Blood tests have a low yield because Lyme is a tissue pathogen and may be present in the blood in very small numbers. Many labs are working on ways to improve the sensitivity of the test.  If Lyme DNA is detected, the organism is there (dead or alive).  An alternative is offered by several labs (including Quest).  Urine is tested rather than blood.  Lyme lives in the bladder and is shed in urine. There is a much greater chance of finding Lyme DNA.  
This is not to be confused with the antigen capture test or the nanotechnology test, both of which also test urine samples.
Let’s then address the Nanotrap test, the new kid on the block.  I haven’t liked the test – but that is about to change. This is a urine test which captures tiny amounts of proteins found on the surface of the Lyme bacteria. The test has been using only one protein: outer surface protein A, or OspA.  This protein corresponds with the 31 band of the Western Blot.  Remember, Lyme is a clever “shape shifter.” This protein is expressed when the spirochete is attached to the gut of the tick. After infection, this protein disappears (downregulated) and Osp C (upregulated) takes its place. So, the current test is really only helpful for acute Lyme and -- maybe late-stage Lyme. After many months of infection, this protein (OspA) may reappear.
Now I know more. When scientists (Center for Applied Proteonomics and Molecular Medicine, George Mason University) started working on the test they were incredulous (blown away) that the so-called experts in the field insisted that chronic Lyme is not real. To prove the concept of the test, and to get the blessing of the IDSA, ILADS and the CDC, the new test was designed to detect acute Lyme. The CDC admits that current testing (two tier test) for acute Lyme is flawed, and THERE IS AN X-PRIZE) award for the first lab to develop an accurate acute Lyme test!  Usually acute Lyme is easy to diagnose, but the test as it stands, may be useful for poorly informed doctors on the frontline.
Now there is general proof of concept. An improved test which includes many proteins, including OspC is promised within 2-3 months.   Now this something to be excited about.  The only major drawback I see is cost. About $400.00. A Lyme Western Blot from MDL, with images, is about $80.00 and insurance will likely pick up the tab.
A culture test from ASL is available. After being slammed by the CDC, the lab is actively engaged in studies to achieve FDA clearance.  The blood culture test has two drawbacks: cost and the patient must be off antibiotics for 2 months before the test is performed. Otherwise, it may be a very good test.
Another test, Lymphocyte transformation test, is available from Pharmasan and a lab in Germany, Arminlabs. This test is based on a completely different concept and technology, based on the same, FDA approved technology, used for TB testing.  The test does not look for direct evidence of infection, as do all the other tests. The tests measures responses of memory T cells. T cell lymphocytes are the first line of defense. Killer T cells attack offending antigen (Lyme), as an innate immune response, long before antibodies are made with the acquired immune response. Here is the concept: T memory cells exposed to Lyme antigens react (by releasing gamma interferon, a potent cytokine). This reaction is measured, qualitatively and quantitively.  This test may be considered a complement to Western Blot testing. The drawback again, is cost, about $350.00.  
From a cost perspective, it is best to start with a Western Blot (MDL) and maybe add a urine DNA test (if covered by insurance).  More advanced testing can be ordered as desired.
A fair question might be: since the Western Blot only shows exposure to Lyme, not the presence of infection, shouldn’t a test that directly measures Lyme infection be done, to prove it’s there?
Here is my answer:  If Lyme persists in mice, dogs and monkeys and test tubes and the patient is sick, I assume the patient is infected with Lyme spirochetes (Borrelia species). Further testing is not needed.  Additional tests may have false negative results only adding a layer of unneeded confusion. The goal of therapy is remission of symptoms, not eradication of organisms.

Bottom line:  There are lots of tests out there. You can likely find the diagnosis without spending a fortune.

Tuesday, October 18, 2016

Alpha gal allergy (meat allergy) and lone star ticks


A 40-year-old patient developed a meat allergy after a tick bite.  This condition has been reported in association of lone star tick bites.  She previously lived in a rural part of South Eastern Virginia and actively engaged in gardening and she had two dogs. Over a period of years, she had numerous tick bites. On one occasion she developed a bull’s eye rash after a tick bite and was treated for Lyme disease. It was after this she noticed a reaction to dairy products, causing hives. She had acquired the tick-bite meat allergy syndrome.  She was a long time vegan. One would have thought “meat allergy” wouldn’t be a problem. It was. Dairy was surprisingly an issue. She found that she was sensitive to trace amounts of meat. For example, she reacted to vegan food prepared in restaurants that also served meat. She became sensitive to leather shoes and leather belts. She began to have hives daily. Nothing could control the reactions.  She became progressively sensitive to a wide array of inciting agents. Chemicals, other foods, environmental changes (change in temperature), non-specific scents would cause reactions. Hives were a daily affair, recurring several times. The hives were severe covering large swaths of skin, itching like mad. The hives were minimally controlled with high doses of antihistamines. She had several scary anaphylactic reactions and carried an epi-pen at all times. The illness was progressive and frightening. In addition to allergic manifestations she suffered with: chronic fatigue, migratory joint pain, numbness and tingling and brain fog.  
She tested positive for alpha gal antibodies.  Alpha gal is short of galactose-alpha-1,3 galactose. Alpha gal is a carbohydrate not found in our bodies but present in other mammals we ingest, i.e. cows and pigs.  A protein in lone star tick saliva promotes the production of antibodies against the foreign carbohydrate leading to the disorder.

Alpha gal allergy is not a benign disorder.  Despite claims to the contrary, patients may become sensitive to many other foods, including dairy, eggs and poultry.  In the case of this patient, she became reactive to foods high in histamine and histamine promoters (such as tomatoes, eggplants, strawberries etc.).  She developed a generalized, systemic mast cell disorder. To the best of my knowledge, this has not been described in literature.

When I first met her, several months ago, she had acquiesced to the notion that hives would always be with her.
But we got her better.  

Treatment has included: therapy for mast cell activation disorder and long-term antibiotics. The former daily hives now occur once monthly at most.
Mast cell programs have previously been described.  A low histamine or mastocytosis diet is required.  In addition, high doses of antihistamines: H1 and H2 blockers, Singulair (leukotriene blocker) and cromolyn (mast cell inhibitor) have effectively controlled her symptoms.

Long-term antibiotics have been very helpful, controlling fatigue, numbness and tingling, joint pain and brain fog.  We she came to see me she was only worried about alpha gal not realizing how much persistent Lyme was affected her.

This disorder is associated only with bites from lone star ticks (perhaps chiggers) but not deer ticks.

Yet another reason to avoid tick bites at all (reasonable) costs.

Friday, October 14, 2016

Unsuspected high level parasitemia (babesiosis)

 Everything I said in the last post needs to be taken with a grain of salt. 

A 40 year old patient from Texas recently presented to my office with:  fatigue, headache, crawling sensations, shooting ear pain, feeling hot, hearing loss, lack of endurance, poor sleep, sound sensitivity, brain fog, swelling of lymph nodes, irritability and other strange sounding symptoms.

She denies ever experiencing: night sweats, air hunger, fevers, depression, mood changes or tearfulness.

She had previously tested positive for Lyme antibodies.

This patient's Giemsa stained blood smear shows a high level of parasitemia. (High levels of Babesia in the blood).


 

Babesia antibodies were not present. Only B. microti and B. duncani tests are available.  LabCorp is offering the B. duncani or WA1 antibody test again.  Direct examination of freshly prepared stained blood smear remains the gold standard for the identification of the organisms. Other, high tech modalities may be limited, especially when the particular species is unknown. These other tests may include: PCR and FISH.

Some patterns of disease are frequently observed, but the disease as a whole, remains quite unpredictable.

A coinfection cannot be excluded based on history alone. On the flip side, a negative blood test does not exclude the presence of coinfection. In this case Babesia. All available Babesia tests are imperfect.

One of the many challenges.


Thursday, October 13, 2016

The Swiss Agent




From STAT we learn that Willie Burgdorfer, the Swiss microbiologist who discovered the Lyme bacterium also discovered a long discarded something else. The mysterious sounding Swiss Agent. Sleuthing the mysteries and controversies surrounding Lyme, modern day researchers have uncovered 40-year-old papers which denote the discovery of the Swiss Agent bacterium. In a note to himself, Burgdorfer asked himself: “I wondered why somebody didn’t do something.”  “Then I realized that I am somebody.”  The agent is known by science to be Rickettsia Helvetica. The organism is purported to cause a Lyme-like illness. The primary investigator at the CDC told the author that molecular biology methods will uncover the germ but the process will take several years. * (Their priorities are clear).  Infection with the agent and associated illness is better known in Europe. It is said to cause debilitating symptoms including: fatigue, headaches, muscle weakness, meningitis, facial paralysis and (sarcoidosis?). I am not vouching for the veracity of this statement.
The paper lays bare, in the starkest terms, the gist of the issues central to the Lyme wars, naming names.
Rickettsia are a genus of tiny, gram negative, obligate intracellular bacteria. Intracellular bacteria are notoriously difficult to eradicate. The best known disease caused by Rickettsia is the redundant sounding Rickettsia rickettsii which causes Rocky Mountain Spotted Fever. RMSF is one of the most severe and potentially devastating tickborne illnesses and thankfully is rare. Many of my patients test borderline positive for RMSF and I have long considered this evidence an unknown cross-reacting species of Rickettsia.
These germs are primarily treated with doxycycline. This is another reason why doxycycline should always be incorporated into the treatment of patients with tickborne illness, at least early on, unless there is a compelling reason not to do so.
I suspect this exotic sounding germ: The Swiss Agent – is a relatively minor and fairly benign coinfection. 
We do not need another explanation for the chronicity of Lyme. The evidence, both clinically and in the laboratory is clear.
The article states the IDSA position is that Lyme is characterized by a bull’s eye rash and “pinpoint” lab test and cured with 2-4 weeks of antibiotics. Really?
The Lyme syndrome is consistently a product of Lyme (borreliosis), babesiosis and bartonellosis. The exact species of which is more often than not, an unknown.
A simple categorization based on stereotypic symptoms is more common than I would have once thought.
Babesiosis: recurring flulike symptoms, night sweats (or day sweats), air hunger, low grade fevers – usually in the late afternoon and depression with inexplicable sudden tearfulness (even in macho men).
Bartonellosis: Pain in non-joint regions (tendons, muscles, plantar fascia or bottom of feet, “shin splints,” neck pain, headaches and occasion characteristic rash. Other symptoms such as those of interstitial cystitis are also relatively common.  Rather than depression, these patients complain of anxiety, irritability, anger, (Lyme rage) and other psychiatric symptoms.
Lyme: Everything else.  Fatigue (all 3), Exhaustion, poor sleep, migratory joint pain, cognitive dysfunction with brain fog, trouble finding words, trouble thinking clearly, episodic confusion, getting lost etc., weakness, numbness and tingling and usually others symptoms suggesting broader multisystem connections, for example: floaters, ringing in the ears, racing heart, change in bowel/bladder function and others.
Sound familiar?
Patients will have visited many doctors and been told: they don’t have Lyme, they have fibromyalgia or chronic fatigue, they need to see a psychiatrist.
Optimal treatment options are becoming clearer over time.  I know longer write about the details of therapy.  Treatment needs to ultimately cover Lyme and Lyme persisters and the two other prominent coinfections, comprising the “nuclear triad.”

Appointments in my office are currently available. Our hyperbaric oxygen therapy at 1.6 ATA (20 feet underwater) is currently underutilized and “on sale.”

Thursday, September 8, 2016

Lyme - ALS and the practice of medicine


This 54-year-old female is happy. Rightfully so.  She has been pulled from the grave.
5 months ago she was handed a death sentence, ALS (Lou Gehrig’s disease), the worst kind at that.  She found she suddenly had trouble speaking, becoming hoarse then losing the ability to talk. Shortly thereafter she found it hard to swallow. She lost weight. She developed weakness of the right upper and left lower extremities. She went to a neurology clinic at a famous tertiary care center.  She was diagnosed with bulbar ALS, a most severe and deadly form. The expectation was that she would need a feeding tube followed by ventilator. The doctors at the clinic continued to follow her downhill course over a three-month period. An EMG test showed the expected motor neuron denervation.  The patient reported an ultrasound exam of superficial nerves showed nerve swelling rather than atrophy as expected.   Scratching collective heads, the neurology team decided to do a lumbar puncture. Lyme was considered. The endorsed DNA/PCR test was negative.  One of her doctors ordered a non-sanctioned test:  Lyme Western Blot antibodies in the CSF. The result was positive. A blood test for Lyme (ELISA first) was negative.  Nonetheless, she was referred to an ID doctor who was sufficiently impressed to prescribed IV Rocephin. After 2 weeks routine monitoring showed an elevation of the kidney function tests, BUN and creatinine and antibiotics were discontinued, despite the fact that she had already responded favorably to the 2-week course of treatment.  She told me her neurologists, expecting rapid deterioration, were recently surprised to see her walk into their office under her own power.
This was the point at which I met her.

When I first met her (6 weeks ago) she could barely eke out a few unintelligible vocalizations.    She coughed constantly (due to aspiration secondary to inability to swallow I suspected).  She had other limb weakness and joint pain and swelling.

She had lost 15 pounds and was clinically dehydrated, not in renal failure. Patients with neurological dysphagia (impaired swallowing) have trouble swallowing “thin” water.  Per my recommendation, with the addition of thickener to fluids, she was able to hydrate well and the kidney tests normalized.
After 6 weeks of IV antibiotics, our second visit, she spoke with me with a very hoarse, gravelly but also very intelligible voice. She was no longer coughing. She was getting stronger and becoming more active day by day.

During examinations she evinced typical neurological signs associated with ALS, including:  hyperreflexia, weakness and abnormal reflexes (Hoffman and Babinsky).

Her illness also encompassed my other typical Lyme features:   Brain fog, joint pain, night sweats and air hunger.  These symptoms were in various stages of getting better.
Lab results: Positive Lyme Western Blot IgG, 8/10 bands MDL, Giemsa blood smear positive for parasites (presumptive Babesia).

More of the story unraveled.  She lives in the country near Frederick Maryland.  She loves to garden.  She also is an avid camper in Southern Maryland.  She recalls finding a red patch on her right forearm 2 years which went away with the application of cortisone, given the diagnosis eczema.
She went back to the original neurology clinic and was told that she should only get 28 days of Rocephin based on CDC guidelines.  She also patient sought the opinion of another University based neurologist who said keep treating for Lyme.


Motor neuron disease or ALS is a known, albeit extremely rare manifestation of neurological Lyme disease.
Of course there are no guidelines for the management of Lyme induced ALS.  I suspect the tertiary care specialists (recommending antibiotics be stopped) were extrapolating from obsolete IDSA guidelines, predicated on the belief that Borrelia spirochetes do not persist after antibiotic therapy, a thesis that has been thoroughly discredited and longer the dogma of mainstream thinking.
This must stop.  Lives are at stake.

Health care professionals need to know what Lyme is and what the practice of medicine is.

Lyme is a new and emerging disease, an epidemic of epic proportion with the potential to kill and maim.  The clinical manifestations of the disease are protean.  The extent and severity of the disease has not been recognized by the medical profession and public health officials.  Progress towards a better understanding of the illness has been mired in war of ideas (driven by egos of certain individuals in the academic medical community). Very little research has been done and we sadly know very little about this new disease which reared its ugly head 40 years ago. In a general sense we do not know the optimal therapies for the management of the illness. We know even less about specific variations of therapy which may be optimally effective for the widely divergent clinical presentations of illness.

The practice of medicine is the application of the current iteration of the healing arts as they have evolved over hundreds of years. Today's doctors are better informed (much more is known) than their forbearers of years gone by. By the same token, doctors must be cognizant of the certainty that their future replacements will see them in the same light. The practice of medicine is based on a complex synthesis of science, fact, experience, educated guesses, empiricism, judgement and perhaps philosophy, prescribed by a thoughtful (hopefully intelligent) physician who is committed to his  creed and solemn responsibility. My dad (a surgeon) always said medicine is a calling, not a job. A bit preachy, but true.

Lyme patients frequently suffer a slow, smoldering sort of death with a quality of life comparable to that of terminal cancer patients.

Contemporary notions of medicine, created by institutions and corporations demand tangible metrics by which physicians be judged.  This may or may not work.  Currently the wrong metric is being applied, i.e. following guidelines.  This is bean counting.  What is important? the patients - of course. This may not be obvious to the institutions that oversee medicine.  The primary metric that should be followed is patient outcomes. This is the only useful measure, when the disease, as is the case with Lyme, is complex and poorly understood.

The "system" should learn from doctors who make their patients better, not condemn them, as is frequently the case.


Friday, July 29, 2016

What do you do when you are bitten by a tick?

What do you do when you are bitten by a tick?

A patient pulled a tick off a thigh 10 months ago. He watched for a rash or other symptoms.  Nothing happened and the incident was quickly of sight, out of his mind.  Three to four months later he started to generally feel crummy, tired and achy.  He thought he was just run down, probably just stress at work and at home. He was confident things would soon clear. But they didn’t. The fatigue turned into bone crushing exhaustion. He found he was losing his mental edge. This former marathon runner was finding it hard to get out of bed; his ability to think clearly and his short term memory were increasingly impaired. He scheduled a routine physical with his family doctor and requested a Lyme test. His doctor informed him that everything looked good except the Lyme test which was positive. The GP ordered 3 weeks of doxycycline. The treatment did not help at all.  He returned to his family doc who said he was not surprised the treatment failed but there was nothing more he could do. The doc said that the 3-week therapy was all the CDC would allow. After cajoling, the primary care physician agreed to prescribe an additional 2-week course of doxy but warned it would not help. The prediction came true.

I saw the patient a couple of weeks ago as he weakly limped into my office having trouble getting onto the examination table. He admitted to increasing confusion and bouts of disorientation.
Where did the notion that the CDC only allows 3 weeks of doxycycline come from? How did the prescient physician know another 2 weeks of doxy was not going to help?

The CDC links with its strategic partner, the IDSA.  The IDSA wrote guidelines 10 years ago which it still apparently clings to.  Let’s see – the spirochete responsible for Lyme disease was discovered in 1982: for all intents and purposes the disease we know is 34 years old. Therefore, guidelines written 10 years ago were penned without the benefit of knowledge garnered during the entire last third of the disease’s life.

The guidelines include “facts” which we now know to be clearly incorrect. For example, the documents states there is no scientific plausibility for the notion that post-Lyme syndrome is due to persistence of organisms. The last NIH sponsored study by Fallon which suggests organisms persist was not published until 2007. The lead author believes in persistence. Animal studies in mice, dogs and primates support persistence. Test tube studies support persistence. Even a xenodiagnoses study recently showed that pristine ticks can acquire Lyme infection from humans with early Lyme previously treated by CDC guidelines. Most of this evidence was not available in 2006.

The IDSA guidelines do not discuss a clinical scenario like the one discussed in the patient’s history. The guidelines strangely discuss acrodermatitis and lymphocytoma, rare conditions known only to exist in Europe caused by species of Borrelia not found in North America. The guidelines, written with a didactic, professorial flare, were out of touch will the realities of clinical Lyme disease in America at the time they were written.

The guidelines do make a distinction between early Lyme and late stage Lyme, especially when it involves the central nervous system.

The patient’s clinical course most closely resembles the late stage, central nervous system involvement type.  The guidelines recommend that 3-4 weeks of intravenous Rocephin be considered (along with a spinal tap).  The 21 days of doxycycline is not what the guidelines recommended for the patient. The family doctor was confused. (who wouldn’t be?)  The guidelines state that only partial resolution of symptoms should be expected and that the impulse to prescribe longer courses of therapy be stifled. This reasoning should be questioned in the face of clear and convincing evidence of Lyme persistence.

To summarize: The family doctor mistakenly thought that the CDC would only allow a 3-week course of doxycycline and the doctor knew that treatment was destined to fail, even when extended by a couple of weeks. I assume this understanding was the result of years of clinical experience. (The CDC does not have the authority to control a doctor's prescriptions). The IDSA guidelines, linked to the CDC, probably recommended a course of intravenous therapy for this patient, not the 3 weeks of doxycycline. What is clear is that the obsolete documented warned doctors the therapy would not work (only be partially effective).

Actually the IDSA guidelines were deleted from the United States DHHS guidelines clearinghouse because they are more than 10 years old. The only listed, vetted and currently active guidelines are those written by ILADS.

Unfortunately, the CDC, IDSA and the institutions of American Medicine do not recognize ILADS. 

From the perspective of mainstream medicine these guidelines do not exist. In the absence of guidelines, the system tells us answers must come from the appropriate vetted experts:  Board Certified Infectious disease specialist.

Doctors call LLMDs do not exist according to mainstream medicine.

The Lyme paradigm war has been raging for decades and shows few signs of letting up any time soon.

This patient in fact saw an Infectious Diseases expert before seeing me.  The expert said the patient never had Lyme disease in the first place because the test results showed IgM antibodies not IgG antibodies. This misconception is discussed elsewhere in my blogs, somewhat exhaustively.  The patient disagreed with the assessment, as do I.

The system predictably got it wrong for a number of reasons, not within the scope of this discussion.

A recent book written by Afrin implores us to “Never Bet Against Occam.” The theorem informs us that the solution (correct hypothesis) to a problem is generally the simplest one: the one requiring the fewest number of assumptions.

The expert made a bad bet.

The patient was bitten by a tick and got sick. Occam informs us the patient has Lyme disease or something that looks and acts a whole lot like it.

This brings us back to the original question. What do you do if you are bitten by a tick?
The answer has to be to take antibiotics for some duration, in hopes of preventing something like the disaster that befell this patient.  The correct regimen is unknown and is a matter of discussion and opinion. But, the correct answer to the question is NOT:  do nothing and wait to see if a rash appears.


A long, difficult journey likely awaits the unfortunate patient who, largely based on widely disseminated misinformation, made the wrong choice. 

Wednesday, July 20, 2016

Patterns


Patients suffering with Lyme disease and related ailments are frequently discarded and disenfranchised by a medical system which disavows the reality of their illness. Patients so suffering have a myriad of complaints and symptoms which may appear bewildering to the modern doctor allowed 6 minutes by managed care or to the super-subspecialist who views them through a narrow lens. The would be/should be diagnostician comes to the bedside of the sufferer with a suitcase of suppositions and biases. From the start, doctors these days seem possessed by an annoying compulsion to make a diagnosis as quickly as possible and deliver the news to the patient as soon as possible, preferably by the end of an initial 6-minute encounter. Today’s healers, along with their patients, cling to a belief that clinical diagnoses can be supported by technology of one sort or another. To the extent that a patient’s history can provide an underpinning of diagnosis, medical clinicians expect a narrative that makes sense within the context of a particular frame of reference. That frame of reference is largely based on mainstream notions of disease.

Within that culture (mainstream medicine) chronic Lyme disease is nonexistent fiction except in the minds of confused patients of who spend too much time on the internet or in the minds of  charlatans (Lyme doctors), poised to take advantage of long-suffering souls or who are at best well-meaning but poor clinicians chasing treatments based on an ill-conceived diagnosis “du jour.” Before the 6-minute doctor walks into the patient exam room the prospect of a diagnosis of chronic Lyme is nil.

The early focus is on the patient history. Patients present with a hodgepodge of incoherent symptoms as perceived by our doctors. Doctors, who are taught to look for patterns seen none at first blush. When a doctor sees a patient the gears in his mind are spinning (if he’s had his coffee), looking for connections with the quick assemblage of possibilities, the differential diagnosis. Of course doctors can only diagnose what they know. And doctors are taught that is much more likely for a common disorder to present in an unexpected way than for a rare disorder to present itself in the context of the same confusing patient presentation.

With this said, most clinicians think about the same diagnostic possibilities: depression, somatization disorders (psychosomatic), fibromyalgia, chronic fatigue syndrome and autoimmune syndromes. Pieces of the story which may not comport with the chosen diagnosis are conveniently excised. The clinician having quickly formed an impression, even within the context of a brief encounter, shares the presumptive diagnosis with the patient and makes a referral or writes a prescription on this basis.

Today, the more enlightened mainstreamers understand the concept of post-Lyme or post treatment Lyme syndrome. Still, this disorder is described within the context of clearly established early Lyme, previously treated with persisting symptoms. The description of the syndrome is fairly limited: fatigue, brain fog, aches and pains, numbness and tingling and perhaps a few other symptoms. But this diagnosis is made reluctantly. The diagnostician, generally a biased infectious disease specialist, demands evidence of a tick bite, perhaps a rash and “dependable” affirming laboratory findings. Should the diagnosis be made – grudgingly, there is no offer of treatment. Instead patients are told they will generally improve over time, or not -- no further thought given as the specialist moves on to the next patient.

Most infectious disease experts spout that Lyme doctors erroneously make the diagnosis, more often than not, in the absence of evidence of a tick bite or a positive blood report. Not only is chronic Lyme the wrong diagnosis, but the patient is said to have never have had Lyme at all.

The process described above occurs with regularity and predictability. Of course patients, the sick and the uninitiated, have no idea what lies in store when they dial the family doctor’s office to schedule an appointment.

The fight over Lyme has been ongoing since the disease was first named in 1977. Polly Murray, the first diagnosed patient, who shared her woes with a famed doctor at Yale was a bit put off when a new disease, “Lyme disease”, was announced to the world, because it was described as a disorder characterized by joint pain. What about all the other symptoms which had been going on and on for years? She was told: No disease causes all of those symptoms. This oft mentioned refrain has been thematic until the present.  No disease can cause all of those symptoms. Doctors do look for recognizable patterns of symptoms. This is why chronic Lyme symptoms are easily subsumed by the diagnosis of chronic fatigue syndrome or fibromyalgia. The shoe fits – more or less. In 1977 even these categorizations of illness were decades off in the future.

Previously the best fit was psychosomatic disorder. As I was taught, a positive review of symptoms (positive symptoms in so many, unrelated domains), is itself evidence of a psychiatric basis for all of the complaints. Again, we have to go back to the idea that doctors only diagnose that which they know.

But there are diseases which cause seemingly unusual constellations of symptoms. In her book, Polly Murray somewhat poignantly tells the story of one physician who carefully listed to her and said: He believed there was something physically wrong (validating) but medicine did not yet have the tools to understand, diagnose or treat the disorder and he hoped that at some future date things would change. Why is this poignant?  Doctors feel annoyingly compelled to make a call, provide a diagnosis, a label. The “I don’t know” diagnosis is rarely employed. Unfortunately, once a patient is so labeled, the diagnosis, frequently one with negative connotations, becomes indelibly tattooed to the patient’s forehead, prominently displayed when the patients seeks opinions from subsequent medical practitioners.

Doctors have a hard time understanding their world in proper perspective. Like others, they are caught up in the moment. Their professional world occupies a point in space in time. Things are ever changing.  Knowledge is ever increasing. The truths of medicine and science are always a moving target, always outside our grasp. The current state of the art will invariably be proved wrong. The current paradigm will be inevitably replaced by a new one as any student of history clearly knows.

This brings us to issues of the Lyme patient and the Lyme doctor. Lyme patients more often than not present with patterns of symptoms that are seen over and over again.  The symptoms are neither random nor manifestations of a modern epidemic of madness.  Lyme patients may complain of fatigue, disturbances of energy and sleep, pains which move about, strange sensations, numbness and tingling, cognitive changes and others. Those with Babesia may consistently have flulike symptoms, night sweats, air hunger and emotional changes. Those with Bartonella may have certain rashes, heel and shin pain, other sorts of muscle pains and specific psychological symptoms etc.

The Lyme doctor differs from his colleagues because he resides in a world of other possibilities. One in which Lyme is placed highly in the ranks of differential diagnoses. He is someone who knows that the problems of Lyme, diagnosis and treatment are far from worked out. Her certainly understands that current technology does not give us the answers.
But I think the Lyme doctor is one who puts his patients above all else. He tries to cobble together that which is known with that which is suspected and go out on a limb, offering treatments which may help the Lyme sufferer, at the same time avoiding harm, such treatments based on science and various clinical resources, but outside the standards offered by the narrow prescriptions of the accepted paradigm of the day. Speaking for myself, the Lyme doctor is one who uses the tools handed him by the profession but in some unique ways, caring more about his patient’s welfare than his own or what his colleagues may think of him. The Lyme doctors allows himself the luxury of critical thinking in a day when that particular commodity is eschewed, in favor of guidelines, the product of our institutions. The danger of thinking for yourself is that you might get it wrong. Powerful forces say you are. But clinical experience tells us we have it right, so we persevere, and thousands of lives are on the line.