Diagnosis of chronic Lyme disease

Lyme. How do you diagnose it?  Here I am talking about the chronic form of the disease, not the acute form. You made have heard, Lyme is a clinical diagnosis?  What does that mean? Roughly, it translates: Your doctor may diagnose Lyme despite negative objective data, such as laboratory tests. How do we get there?  For one thing, your doctor needs to have a high index of suspicion, something  qualitative, although based on something quantitative.  I going to make a controversial statement. Lyme can only be accurately diagnosed by a physician who is appropriately qualified. A doctor needs to know: how common the disease, geographically, around his/her medical practice, where the patient lives and the patient's travel history. The physician knows to assess the patient's risk with regard to lifestyle.  The physician processes a good understanding of the wide range of symptoms and syndromes associated with Lyme and related infections, which may include very strange symptoms – or common symptoms. The term index of suspicion refers to a prioritization of possibilities. Doctors who are qualified to make the diagnosis are doctors who are properly informed;  it has nothing to do specialty, subspecialty, diplomas on the wall or letters at the end of a name. For example, infectious disease experts and rheumatologists do not automatically qualify as doctors who can at this time, accurately diagnose Lyme disease.  When a doctor evaluates any patient, consciously or unconsciously, he/she constructs a list of possible diagnoses, referred to as differential diagnoses or diagnosis. Lets briefly discuss an example. A patient complains of sudden knee pain. Here is how 2 doctors might consider possible causes, in order of likelihood.  

Doctor A (low index of suspicion for Lyme):  Trauma. Other structural disruption of joint. Aches and pains of life. General inflammation, bursitis. Osteoarthritis. Autoimmune - RA, lupus. Reactive arthritis, Reiter's syndrome. Crystal arthritis, gout, pseudogout. Infectious arthritis, GC, Chlamydia, Staph, other. Lyme disease, other inflammatory diseases like Crohn's disease and others. 

Doctor B (high suspicion): Trauma, Lyme disease and then all the others (different order). 

Caveat: Dr. B has no business diagnosing Lyme or anything else, if he/she is not intimately familiar with the above causes of joint pain. You can't rule out something else if you're not aware that that something is exists. The entities listed about are covered in depth in medical school and CME courses, and many are seen in clinical practice.  The requirement that the doctor be informed about non Lyme issues, better than average, is something that cuts both ways.

The CDC estimates there are 300,000 new cases of Lyme each year, this is called the incidence of disease. The 30,000 yearly number is based on reporting criteria, to be used for epidemiological trends, not a pronouncement of the actual number of cases. The number of people with Lyme disease  in the population as a whole, with any stage of the illness, is called the prevalence of the disease. This number may encompass asymptomatic cases, since they may become ill at some time in the future. If you don’t believe in chronic Lyme, you would argue against these inclusion criteria. We may infer that an astronomical number of Americans may have some form of Lyme disease. We don’t really know the true number, but it is very large. Some new cases occur in patients already suffering with the disease. This adds to the incidence number but doesn’t change prevalence. Eighty percent of acute cases get better with standard therapy etc. These cases are excluded from prevalence and so on. 

Most patients with Lyme, were at some point told their problem is:  psychosomatic, fibromyalgia, stress, depression etc. Alternatively, they are misdiagnosed with rheumatoid arthritis, multiple sclerosis etc. Why? In 2018, most doctors have a low index of suspicion for Lyme. Depression is very high on their radar. Why? Something is seriously wrong with organized medicine which has buried the biggest epidemic of our time. Makes you angry. Doctors in general are programmed to think of Lyme as only acute Lyme. The false narrative is repeated: Tick bite, bull’s eye rash or Bell’s Palsy, swollen knee, carditis, meningitis and that about it. Lyme is acute not chronic. Lyme is geographically limited. Blood tests are reliable, especially in chronic cases. Same for the past 20 plus years. 

A doctor should recall something he heard in medical school (at least I remember it):  When a patient has an unusual presentation, it is more likely caused by a common disease than an uncommon one.  Assuming a high index of suspicion, this notion was tailored made for Lyme. Patients may present with a single issue, like tendinitis or night sweats or the acute knee pain, discussed above. More often, patients present with a collection of complaints reflecting involvement of multiple organ systems. I start with the patient history in this discussion of diagnosing Lyme disease and this is a clear reason why. Making the correct diagnosis of an illness relies on the following with relative import of contribution, 85% history, 10% physical and 5% lab. This was also tailor made for Lyme. Diagnosis is based eighty-five percent on a patient’s history.  Stop obsessing about CDC positive, IGM vs IgG etc.  I think a major obstacle here is that patients have been told by a zillion doctor that they don’t have Lyme. Patients want the feel of a piece of paper that says, Lyme positive, so they can be at last vindicated. Sorry to burst your bubble. When you take your lab results back to your Ivy League experts, they say, the testing laboratory is garbage, they don’t believe it, it’s a false positive or something along those lines. 

Patients with chronic Lyme have a lot of symptoms and frequently strange symptoms. (You don’t have to have all of these, or any of these to have Lyme).  Patients are tired and nearly all complain of poor or interrupted sleep. Many have fevers, night sweats etc. Their endurance is shot. When they try to exercise it’s a disaster and it takes days to recover. They may have a variety of skin problems. Vision is weird, they can’t focus, and the eye doctor says everything is perfect. They have ringing in the ears. They have swelling of lymph nodes. They having breathing difficulties, especially the classic “air hunger,” can’t take a deep breath or find enough air in the room. They have heart palpitations and skipped beats. They have chest pain. Their bowels and bladder don’t work right. They have headaches, front or back, with neck pain. They have pain of variable intensity, mild to incapacitating. The pain is migratory (travels). One days it’s the knees and elbows and next day it’s the hands, wrists and fingers, etc. Usually joints don’t swell, sometimes they do. Muscles hurt. Tendons hurt. Patients experience shin pain and foot pain. Patients usually have neurological symptoms: dizziness, off balance, numbness and tingling, burning sensations, electrical sensations, weakness, clumsiness, dropping things, etc. Most have psychological and psychiatric symptoms. and/or changes in cognition.  Brain fog. Can’t remember names of things. Memory loss. Confusion. Getting lost. Putting things in the wrong places. Can’t pay attention or focus. Feel like they are getting Alzheimer’s etc. Worried they can no longer do their job.  Craziness. Depression. Mood swings. Crying for no particular reason. Irritable, angry, rageful.  Bipolar symptoms, ADD symptoms, even hallucinations and, Other.

Clarification: the term Lyme,  as I use it, generically includes common coinfections. 

Geography: Lyme is more common in Maine than Arizona.  This doesn't exclude Lyme from consideration in Arizona.  Informed doctors have a good sense for the incidence and the presence of the disease in different locales. CDC reports must be viewed in context.  For example, when the CDC says no cases of Lyme were reported in Georgia, these facts are in play: The disease is miserably underreported in some states, counties and cities.  This may be largely due to physician misinformation and ignorance. Many doctors are fair with the diagnosis of acute Lyme disease. Predictably,  large numbers of cases should be expected up and down the Eastern Seaboard. These states have certain factors in common: bird migration, fauna and flora, mouse and deer populations and tick population. High risk, outdoor activity is more common in the South. Few cases of Lyme would be expected in arid, dry dessert regions of the country on the same basis. 

The idea that Lyme is only found in the Mid-Atlantic and the Northeast is part of an antiquated, false narrative. 

Some people fill out check lists on line which are scored. Standard instruments may have value as a screening tool.  I like to get the history directly from the patient. The “flavor” of the patient’s experiences, contextually, is very helpful. Some patients check off every symptom, but when questioned may say, I had a little of this or that 5 years ago, etc. Diagnosis must be confirmed by the physician. 

There are of course patients with other presentations, like a new headache that won’t go away and many, many others. Those cases may be more difficult. A patient I saw today presented only with insomnia and new severe, persistent, daily headaches. In these cases testing may be more important.

The physical exam frequently gives clues, discussed elsewhere. If laboratory results are only 5% inputted data needed for diagnosis of Lyme disease, then it is much more important to adjust attitudes (physicians and community) rather than develop new testing technology. New technology may be important in the future for many applications. 

If this is correct, it is a bad idea to spend a ton on lab studies, some of which are still in beta testing. A Lyme Western Blot from a specialty lab like MDL or IgeneX and a coinfection panel which can be obtained from standard mill labs, LabCorp and Quest. There are many variants. I like to add C6 peptide. Bartonella henselae antibodies, not PCR. Babesia microti antibodies. Babesia duncani WA1 antibodies (Quest). Ehrlichia and Anaplasma antibodies. Rickettsia, RMSF or Rocky Mountain Spotted Fever antibodies and that’s about it. If I want to look more carefully for Babesia I do a Giemsa in my office or consider a FISH IgeneX.  That’s it. When in doubt, I might order the occasional Ispot test. Nanotechnology may be on the horizon. Generally it is not helpful to order serial Western Blots, except for “seroconversion” test. Repeating the same test over and over again, expecting a different result is the definition of insanity. There are many opinions about laboratory testing which are equally valid. This is my opinion only.

Key points: clinical diagnosis – detailed history is key.  High index of suspicion. Doctor must be knowledgeable about the disease. Patients must also be knowledgeable about the disease need to be their own advocates.    

Problem with better test:  No matter how great the test is, the nonbelievers, who currently control the world of medicine, will find ways to discount the tests and otherwise disparage the results and the doctors who order the tests.  

Remember: If a patient has a rare presentation, it is more likely due to a common illness than a rare illness. And, Lyme is a common illness. 

Does it sound like I am saying only doctors known as LLMDS can diagnose Lyme. In fact, this is what I am saying. Even if another doctor gets the diagnosis right, they will not understand the disease and therefore not prescribe the correct medicine(s).

Perhaps you are thinking: That's all well and good but, after considering all the factors, my doctor is not sure if I have Lyme. 

In this case, the doctor must go back to square one and construct an exhaustive list of possibilities, including such things as cancer. The doctor must carefully go the list, one by one, and eliminate all the possibilities.  At the end of the day, with all other causes of symptoms or illness eliminated, Lyme is all that's left. It's the Sherlock Holmes rule of medicine: Once you have eliminated the impossible, then whatever remains must be the answer. 

The doctor may be worried that there is something he/she forgot to check.  This is fine.  Doctors would do a better job all around if they thought of their diagnoses as hypotheses, a theory that might explain things. For example if it fibromyalgia was a hypothesis, rather than a diagnosis, the treating physician might be less upset when a competing hypothesis, e.g. Lyme, is inserted.  With this in mind, Lyme can be a tentative or working diagnosis, a hypothesis. If things don't go as expected it may be useful to go back to square one.