Lyme, Babesia, MCAS, FMS, CFS, disordered sleep and PTSD.

A 39-year-old female sought my attention some years ago.  She has a history of PTSD.  She was sexually abused as a small child by numerous close family relatives.  She came to see me for the treatment of Lyme disease.

Many don’t understand PTSD.  It is a specific syndrome with characteristic features:  flashbacks and nightmares.  Time is different for those with PTSD.  Another patient, a former special ops soldier watched a buddy shot gruesomely a few feet away.  With flashbacks it happened 10 minutes ago, not 20 years ago. The flashbacks and nightmares are surreally vivid.  The colors, sounds, smells, adrenalin, fear, sweat and blood are real and now.  PTSD survivors do not trust.  They feel disconnected and depersonalized.  Forming bonds and establishing relationships is difficult at best.

The patient I am discussing ( her PTSD) improved a lot with 14 years of intense therapy.  She is still treated with EMDR and other therapies.

She has always lived in Frederick County Maryland, a Lyme hot spot.  She recalls a lot of tick bites over many years. She never had an EM (bull’s eye) rash and has no recollection of acute symptoms associated with a particular tick bite.  Her chief complaints included FATIGUE, COGNITIVE DYSFUNCTION/BRAIN FOG, POOR SLEEP, ANXIETY and PAIN.  Her pain was diffuse involving small, medium and large joints, upper and lower extremities.

She felt like she was always walking through fog.  She was distractible and confused.  Simple tasks were onerous.  She was in bed for 12-14 hours but slept only 5.  Sleep was not refreshing. She experienced regular night sweats and bouts of air hunger.  She experienced irritability and mood swings with episodes of random tearfulness. She experienced weird dizziness, difficult to explain – but she felt like her head was disconnected from the rest of her. She experienced numbness and tingling and bouts of weakness. She had a boatload of other symptoms, circling most symptoms on my symptom inventory form.

She previously worked as a special ed teacher but had been on leave for several years.  A previous doctor had diagnosed Lyme 3 years before and treated her with supplements, IV Myer’s cocktails and low doses of pulsed antibiotics:  such and such MWF, something else TuTh and something else one weekends with off weeks over the course of a month. This treatment went on for over a year.  She never got better and was referred to me.

Something key in her history proved very helpful.  She admitted to frequent episodes of flushing and itching. She had dermatographia: when you scratch her skin the color changes from white to red and stays red.  She also suffered with orthostatic intolerance.  When she stood up she felt like she had to sit down again after a few minutes.

Physical exam remarkable for paired tender spots associated with fibromyalgia, decreased sensation lower extremities peripheral neuropathy pattern and facial flushing and dermatographia (writing on her back legible 40 min later). Lyme Western Blot from Stony Brook:  IgM 18,41,64,93. A sleep study showed absent stage 3-4 sleep with alpha wave intrusion. A brain SPECT showed decreased perfusion diffusely.

The main diagnoses were:  Lyme, Babesia, MCAS, FMS, CFS, disordered sleep and PTSD.

One of the turning points of therapy was treating mast cell activation. Different drugs were best for different people. Yesterday a patient responded miraculously to Claritin. For this patient ketotifen has been key.  Klonopin, a benzodiazepine has been very effective.  Mast cells have benzodiazepine (BZD) receptors and BZDs and similar like Ambien may be very helpful.  As with other patients she has not responded well to typical antidepressants like Cymbalta. (SSRI/SNRI antidepressants are prescribed without thought and patients are usually not informed that getting off these drugs is frequently fraught with severe withdrawal symptoms).

We went to IV antibiotics for quickly and she responded very well to several months of Rocephin and others.   Babesia was treated with high doses of several agents and improved after many months.

MCAS treatment was as described in other posts. She also did well with cannabis. She obtained CBD which helped pain and anxiety tremendously.  (Cannabinoids are MCAS stabilizers). THC also helped with pain and sleep.  

Sleep is key for most patients.  Many need multiple agents. (Doxepin, Ambien, Neurontin, others).

She certainly has chronic fatigue syndrome.  Antibiotics quashed cognitive dysfunction and helped to significantly reduce pain.  She was able to get 9 hours of decent sleep.  She was still tired. The sleep study showed typical problems of disordered sleep “architecture.”  Without deep sleep, and this has been studied in college students, everyone develops chronic fatigue (syndrome).  A sleep specialist might use the term hypersomnolence or narcolepsy-like. It’s the same thing.  Drugs like Nuvigil and Adderall were/are indispensable for improving quality of life. 

She has the criteria for fibromyalgia. She has the tender spots. Pain doctors now call this central sensitization.  What you call it depends on your perspective bias.

CFS vs Fibromyalgia vs MCAS vs central sensitization vs hypersomnolence vs chronic Lyme disease etc. Perhaps it is important to listen to each camp since they may have something to offer.  The syndrome names are used above descriptively. FMS is used when discussing tender spots and pain and CFS is used when discussing fatigue. 

Luckily her pain level went from 9 to 3 with antibiotics and MCAS therapy.   Neuropathy also improved. 

Here are a few key points:  NSAIDS don’t usually work; antidepressants may help or make things worse – norepinephrine effect is needed, low doses of older TCA and antidepressants like Elavil may be effective without awful side effects; anticonvulsants, especially Neurontin may or may not work; cannabinoids, mostly CBD with some THC can be very effective.

PTSD is a very serious disorder and specialized care – not run of the mill mental health care is required. 

After more than a year with me:

She works full time -- sleeps OK, has no brain fog, fatigue is managed, MCAS is controlled and pain is managed.  She has a good quality of life and smiles a lot.