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?
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.