EPCDS and Lyme: an evolving paradigm
I have been tossing the idea around in my head. A Different spin, a new way of thinking, a new acronym. People like acronyms. Exhaustion, Pain, Cognitive Dysfunction Syndrome. These symptoms are the common threads, the bare bones of chronic illness known by different names, depending on your perspective. I am writing this to introduce the topic, not discuss it in detail.
What’s in a name? A universe of thought. Some thinker, group of thinkers, doctors and scientists etc. have looked at a bunch of symptoms and arrived at a name. Many of the names and acronyms are familiar to us all. FMS for fibromyalgia syndrome. CFS for chronic fatigue syndrome. CLD for chronic Lyme disease or PTLDS post treatment Lyme disease. POTS for postural orthostatic tachycardia syndrome. Newer acronyms have popped up like MCAS for mast cell activation disorder.
What these diagnoses and others (without acronym) have in common is that they swirl around EPCDS. Exhaustion, pain and cognitive dysfunction or brain fog.
They are all described in medical literature and associated with contemporary notions of evidence-based or science-based medicine. In each case it looks like advocates of a particular approach think are onto a theory of everything (TOE). Like the unifying field theory that Einstein and others have failed to find in physics.
Specialists all have blinders on. And – specialists tend to know a lot about their field of interest and read their journals but not the literature from other specialties which are reinventing the same wheel with a different twist.
Exhaustion. Let’s start here. Fatigue isn’t adequate. In fact, I don’t know a word in the English language which is adequate. Patients can’t get of bed. Moving a finger, lifting an arm can be a challenge. Taking a shower an impossibility. Nobody really understands this, the “pathophysiology.”
A rheumatologist sees fibromyalgia. They see it as a functional illness (whatever that means). A CFS specialists, perhaps a neurologist sees SEID, systemic exertion intolerance syndrome, something likely post-viral. A sleep specialist may see idiopathic hypersomnia, a sleep disorder similar to narcolepsy. Idiopathic is a big doctor word that means unknown cause (or the doctor’s an idiot and the patient is pathological). A cardiologist, endocrinologist or other POTS specialists may see an impaired autonomic nervous system or dysautonomia. Perhaps HPA dysfunction (adrenal fatigue) will be stressed. A pain specialist may hone in on central sensitization, alteration in pain-brain pathways as the cause. Those so inclined may always diagnose MCAS, mast cell activation. A Lyme specialist may be convinced that germs are the cause. Others doctors may focus on: genetic issues, poor DNA methylation; toxins; oxidative stress/mitochondrial dysfunction; disruption of the microbiome; autoimmune disease; systemic inflammation; nutritional issues including gluten sensitivity; chemical imbalances within the brain and others.
Doctors are mostly hammers in search of nails, patients with EPCDS, for example.
We could repeat the discussion for pain and cognitive dysfunction. The discussions would be very involved, but the same names would likely come up. This is an introduction to the topic- a preview.
So far, nothing new. Its not about new; it’s about thinking differently.
Sleep. Let’s back up a step. Disordered sleep is a common denominator. Patients have trouble falling asleep, can’t stay asleep, sleep is fragmented and sleep is unrefreshing. Time and again I am astonished that such patients have seen scores of specialists and never had a sleep study. Let’s turn our attention to the sleep specialists. Patients may have narcolepsy. Patients may have abnormal “sleep architecture.” Most commonly there is a deficit of deep sleep. Patients may have unexpected sleep apnea – perhaps central sleep apnea. It is not enough to know Lyme and coinfections. A good Lyme doctor should understand a polysomnogram and MSLT. Sleep is something we can address. Therapies for fibromyalgia, dysautonomia, Lyme disease, coinfections and others may completely overlook this. The notion that the sleep will improve when we fix the Lyme disease is --- well, wrong. Improve function and other things, like a dysregulated immune system or HPA axis may start to heal. Perhaps Lyme was the blow that knocked down the dominoes. While treating Lyme you also try to pick up as many dominoes as possible along the way. We might be able to address fatigue with drugs like Nuvigil or Adderall, at least a start.
The idea is that a doctor should be a “holistic” Western practitioner at the least. Fuse things together. Read the literature: yes it takes a lot of time. Know a lot about the various specialties and how they think and try to make connections and draw things together. We should not automatically cut out a specialty because they “don’t believe in Lyme.” That is their problem. Let’s not make it ours. They all have something to offer. Some more than others.
There is another big plus. The approach gives us a bridge. A common language. When we talk about a dysregulated microbiome, hypersomnia, autonomic neuropathy etc. we are using words that make sense to many colleagues. When we talk to the same highly intelligent colleagues about: Borrelia burgdorferi sensu-stricto, pleomorphic round forms, biofilms, Babesia duncani, anaplasmosis, tickborne bartonellosis and rickettsiosis and Herxheimer reactions we are speaking Greek – gobbled gook. But this is an aside.
The approach works and has helped many of my patients.
As a stated. I am introducing the topic. A full discussion would take many pages, if not a book.
What do you think?
I am available for consultations in my Rockville Maryland office.
301 528 7111
I like the way you break it down. It's so much easier to inform people who are being diagnosed with a dozen different ailments.
A book would be fantastic.
My husband has been diagnosed with ALS, but he also tested positive to Borrelia Burgdoreri, Mycoplasma and several other coinfections, but the Neurologist and GP refuse to accept it is a bacterial problems. I have three strains of Borrelia, Mycoplasma, Rickettsia and other coinfections but I have given up on trying to get treatment.
Thank you for the comment. It is important to connect the dots and understand how the diagnoses work together. The individual diagnoses: POTS, EDS, CFS can be listed as problems subsumed under an overarching diagnosis. The hard part can be deciding priorities -- what to treat first, etc.
I am sorry your husband has ALS. There is a clear relationship between Lyme (Borrelia infection) and motor neuron disease or ALS.
Thank you, Dr. Jaller, for your posts. I read them all to help me connect my own dots. I am a 65 yo retired engineer. I have been managing my own Lyme fairly successfully for eight years with the help of two good doctors with open minds, but don’t have any illusion I might be ‘cured’. The more I read the more I realize how much we still have to learn. But I do believe the answer will lie in enabling and promoting the conditions for the body to heal itself. Much of that includes chipping away at the years of built-up work we have accumulated and asked our immune systems to do. ... Your thoughts are always a breath of fresh air and I find them very useful. Thanks again. -Russ
An excellent subject to consider. We have all these specialists and every one of them will look at a patient with multiple symptoms and produce a name that fits one or more. Will ignore everything that doesn't fit. So, many specialists, many diagnoses. No one seeing the big picture.
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