CFS, FM, Lyme and others

According to experts, chronic Lyme isn’t real. This is a Lyme Blog, but let’s look at the other side. Fibromyalgia, chronic fatigue syndrome and depression are the real problems I am told.  Is this correct?

Chronic fatigue syndrome has changed.  The CDC guidelines are out.  The IOM guidelines are in.  Terms like chronic fatigue and immune dysfunction syndrome and myalgia encephalitis are out. Systemic exercise intolerance disease (SEID) is in.  The definition narrowly (by design) focuses on a few key symptoms. The emphasis is on: POST EXERTIONAL MALAISE, DISORDERED SLEEP, COGNITIVE IMPAIRMENT AND ORTHOSTATIC SYMPTOMS.

A lot of SEID patients have abnormal tilt table results and are misclassified and should be reclassified as POTS.  This is important because we know how to treat POTS.

CFS and FM are claimed to be subjective. Not true. There may be many objective findings. Abnormal immune system findings with altered levels of immunoglobulins and natural killer T cells. Increased cytokine levels. Endocrine changes with alterations of ACTH and insulin like growth factor.  Alterations in serotonergic activity in the CNS.  Abnormal sleep studies. Abnormal SPECT scans.  Cervical lymph node biopsy showing reactive hyperplasia.  Others. These facts are reported in current mainstream medical literature discussed in UpToDate. The term “functional” illness has been bandied about disparagingly. The idea is that there is nothing physically wrong and therefore it is a “psychosomatic” disorder – there is nothing wrong. The term functional illness, still used after so many decades serves only to disparage and impugn suffering patients, encouraging the mean attitudes held by so many physicians and should have no place in medical literature.  Many patients have a history of tick bites, tick exposure and positive blood tests for Lyme and/or other tickborne pathogens.  No mention is made in mainstream medicine.

We are informed that 70% of fibromyalgia patients and 70% of CFS patients overlap one another. The diagnosis depends on the bias of the doctor making the diagnosis. 

Fibromyalgia criteria have evolved.  The most recent guidelines were described in 2010-11.  Widespread pain is the overarching feature.  It is widely believed that FM is a disorder of pain regulation within the brain.  Patients are reported, according to standard criteria to suffer with: fatigue, impaired cognition, psychological symptoms, headaches, numbness and tingling and “others.”  Palpitations, GU symptoms, IBS, night sweats and others.  It may be associated with other “functional somatic disorders” including CFS, IBS, migraine, TMJ, chronic bladder pain and pelvic pain syndromes.  Sounds suspiciously like Lyme disease. The affixture of "other functional illnesses" is egregious.  Some experts can't resist telling us the syndromes are more common in young-middle aged women.  The undercurrent of sexist stereotyping is tenacious. 

Other syndromes with similar features include:  Mast cell activation syndromes, POTS, hypermobile joint syndromes and Lyme disease. 

In my experience (goes without saying), many patients suffer with Lyme disease and/or other chronic infections. Culprits include: Babesia sp, Bartonella sp, Chlamydia pneumonia, Candida and others.  Treatment of Lyme and coinfections is discussed elsewhere. 

What is standard therapy?  Cymbalta, Lyrica or Neurontin and a prescription for exercise.  Maybe it works for some, if so I only see the patients who fail this approach miserably. 

Disordered sleep is a common denominator.  Patients have abnormal sleep studies. They have various sleep disorders and hypersomnolence, akin to narcolepsy. This issue is described in completely different ways in sleep medicine language vs CFS language. 

Patients - everyone require good sleep.  Many need agents like Ambien, Trazodone, doxepin, hydroxyzine, Klonopin and others.  Sleep makes a huge difference.

Fatigue can frequently be effectively treated with drugs like Nuvigil.

Mood issues can be addressed.  Mood stabilizers with neuroprotective properties like Lamictal may be preferred over typical antidepressants. We keep hearing that depression hurts. Really?

Cognitive impairment and dysfunction may be treated with Namenda and others. Namenda also may help migraine. 

Pain. Patients need help. Unfortunately, pain doctors, under the eye of the Medical Board, are shuttering their practices.  Medical cannabis may be helpful.  Some patients are on massive doses of Oxycontin and its not working well.  Patients have high tolerance. Opioid receptors have long been saturated. The risk – reward ratio increases dramatically as does are pushed higher with minimal additional pain relief.  Raising the dose at some point becomes like squeezing water from a stone. Savvy pain doctors (I do not prescribe opioids) are trying their patients on smarter opioids like Belbuca.  

IV ketamine or compounded nasal sprays may help.

Botox may help.  HBOT may help.  

There are a lot of things that can be tried. 

Mainstream medicine has no empathy for pain.  Cymbalta and Lyrica may have many side effects and do not work for serious pain. 

Patients may feel suicidal because of pain.  There is no time to wait for antibiotics to work.  Patients need relief.  The consequences of not controlling pain can be deadly.  

Lyme patients have:  CFS, FM, MCAS, POTS, hypermobile joint spectrum illness, chronic pain disorders with hyperalgesia, Migraines, CRPS and others.  Patients with EDS/hypermobile joint syndromes with abdominal pain likely have MALS. These illnesses require proper diagnosis. All of these illnesses have specific treatments.

Disease is determined by a complex interplay of genes and environment (including germs).  Some of these illnesses more commonly afflict women than men.  This should cause empathy not derision. Men have higher rates of cancer and heart disease: what a bunch of lightweights.

These factors do not change the fact that chronic Lyme patients more often than not require long-term antibiotics. This is discussed elsewhere. 

The treatment of Lyme, MCAS and POTS is discussed elsewhere.