I just saw a 32 year old female. This is the patient that I dread to see. She saw my associate for a routine physical. My associate does not treat Lyme disease. The patient complained of severe brain fog, memory loss, inattention and confusion. These alarming symptoms had been increasing over a period of several years. She even told my associate that she felt like she was developing Alzheimer's disease--at age 32. My associate ordered a few lab tests; she threw in a Lyme WB. The results: IgG 41 and 39 bands present. This meets the IgeneX criteria for a positive Lyme test. According to IgeneX the presence of these two bands indicates Lyme exposure with specificity of 96%. Of course IgeneX is looking at their own assay; there is no real basis for transposing this data to WBs obtained elsewhere, even though his may seem logical.The patient researched her symptoms on the Internet. Lyme disease frequently popped up on her browser. She is confused. Does she have Lyme disease? If so, how is it treated. Internet sources inform her that treatment ranges from 28 days to lifelong. How is a medical consumer to make sense of this and other contradiction? Throw more in the mix: She is trying to get pregnant, now what? Can Lyme be passed to the fetus? She has read this on line. On the other hand, aren't antibiotics dangerous to a developing fetus and just dangerous in general.
My exam showed peripheral neuropathy: nothing else concrete.
Cognitive problems are difficult to prove. For the most part the patient's subjective report of symptoms is all you really have to go on. Neuro-psychological testing can be ordered but these tests are nearly impossible to interpret without a before and after. By the time patients present we only have the "after." The tests are expensive, time consuming and rarely covered by insurance companies. What then?
A brain MRI and brain SPECT scan are good starting point. They may be normal or abnormal.
If the brain MRI shows white matter changes a neurologist might to chalk it up to migraine , early MS or vasculitis. A rheumatologist will likely concur: vasculitis. A psychiatrist might suggest depression.
Further Lyme WBs may be positive or negative. Co-infection testing may be positive or negative. From the perspective of other physicians I have found that little credence is given to these results even when they are positive.
This young woman with very troubling symptoms showed up on my schedule for 15 minutes to review "lab results." If not for the 39 band on a WB she probably would never have seen me.
It became my job to introduce her to a medical parallel universe, within the allotted time.
Being an "LLMD," if that is what I am- can sometimes feel like a curse. Ignorance is bliss. But I became a doctor to help people- that is who I am- that is what I do.
How do this tell this young woman that she is lucky she came to see me on this day?- it sounds arrogant, even to me. She may see countless other physicians who will conclude that she definitely does not have Lyme disease. As an "erstwhile" neurologists friend once quipped: "Why is it that you know something that no one else knows?" Why indeed.
I am amongst the very few that believe in chronic Lyme or for that matter the existence of neuroborreliosis it seems. I get no support from local colleagues or local medical institutions held in high esteem who believe my views are incorrect and misguided. Furthermore, they point to the dangers of long term antibiotic therapy for a non-existent illness.
I have but 15 minutes to inform and instruct her. All I can do is order the tests outlined below and give her a lot of reading material. I can ask her to watch Under Our Skin--which my patients tell me is now difficult to find. I direct her to "Cure Unknown" and the ILADS website.
My blog is not a good starting point. It is generally only helpful for those already steeped in the Lyme debacle.
I do not know if she will follow through with any of my recommendations. Lyme patient's with cognitive deficits have trouble reading and processing to start with.
And then there is the problem with family members. They dismiss the diagnosis of Lyme disease and frequently ridicule it. It doesn't exist. They disparage the treating doctor(s) and offer no validation of the patient's suffering or pain. This may lead to depression and feelings of alienation and hopelessness. The high fees charged by many physicians further reduces their credibility in the minds of many.
No this is not the patient I want to see. Not today. Perhaps selfishly I would rather see the patient who has already seen 40 other doctors, those who know more about the nuances of Lyme than I do. If I charged high fees the uninitiated would be weeded out: life would be so much easier.
Treating such patients(the one described here) is a risky business. It is not insurance companies who have "turned me in," contrary to public belief. No, it is my colleagues, members of the IDSA, who have been anxious to report me to the Medical Board.
The anger which I once had is gone. It is pointless and emotionally draining. As the smoke has cleared I am overcome with a new found sense of humility. After all- who I am really- a lone voice shouting into an empty wind only to hear the echo of my own voice.
I put myself into the patient's shoes. How can this one doctor have special knowledge about my illness? It admittedly does not meet the sniff test. She may ultimately see an assortment of specialist who may politely or not so politely tell her that I am a quack- or just wrong at best. Although it is not Lyme disease, no diagnosis will be found. Perhaps years later she will come back with a progressive, mustisystem illness- perhaps with an infected child. Or maybe, after looking into the matter she will decide to return for me to treat her. Time will tell. I cannot control the decisions of others. I can only control my own decisions.
I have no confidence that the IDSA "review" of its guidelines will bring us any closer to the truth.
The public debate in DC is set to occur this July. ILADS is armed with great speakers and a plethora of facts and published scientific studies. But ultimately the IDSA will be passing judgment on itself. How can the accused party fairly judge itself? This runs contrary to human nature.
The light of truth will eventually shine on this national disgrace known as Lyme disease. How long this will take? Nobody knows. We do our best and sail on through the still stormy seas.
I love being a doctor, I always have. Still--some days I wish I were a fisherman, sailing into challenging whimsical ,unpredictable seas-seeking elusive tuna or other prizes.
Perhaps this is what I do after all.