CFS, SEID, (a little POTS?)

If you treat Lyme you see boatloads of patients with chronic fatigue syndrome and many with POTS. CFS, myalgia and encephalitis has been renamed SEID, systemic exertional intolerance disorder. Many patients with SEID have orthostatic intolerance.  When they stand up for any period of time they feel the need to sit down or lie down. Is there a connection we are missing?

POTS, postural orthostatic tachycardia syndrome is a manifestation of dysautonomia, a broken autonomic nervous system. This important part of the nervous system does many things. With POTS with focus on a cardiac manifestation.

A lot of disorders are diagnosed based on cutoffs. The numbers are somewhat arbitrary. For example, POTS is diagnosed when supine pulse goes up 30 points with standing.  Perhaps a lying down heart rate goes from 60 to 90 when a patient stands, and stays there and may increase.

A patient may need to stand for 15-20 minutes before the change occurs.  Some patients are tortured with a tilt table test (not originally designed to diagnosed POTS).

Today I saw a 54 year old male I have been following for a number of years.  His main problem has been crippling fatigue.  Maybe he has Lyme, not clear.  Antibiotics were a little helpful (or placebo effect). With high viral titers, EBV and HHV6 the antiviral Valcyte helped, for a while. Maybe. Always looking for the next thing he asked me to prescribe rituximab (kills EBV?). NO WAY. He is always looking for a new cure. He tends to overdo exercise when he feels better and relapses.. Treatment for mast cell activation disorder has been somewhat helpful. 

Today he is feeling the best he has felt in 10 years -- normal.  How did we get there?

When he changed position lying to standing his pulse only increased about 12 points. No POTS by standard criteria.

I wondered what would happen if I treated him for POTS.

I didn't make many changes.  He has high blood pressure.  I changed his BP med, an ARB, Cozaar, a standard go to BP med to Coreg.  Coreg is an alpha/beta blocker and has been shown to help POTS. Normal B blockers should not be used.  I started him on salt (only started  one gm NaCl) and he added more to food. ( crazy in a patient with HTN, right?)

The change in pulse corrected.  His blood pressure did not go up.  Only a small subset of blood pressure patients are salt sensitive, especially blacks and the elderly.

Will it work for others? I don't know. I don't  know if it will continue to work for him.

The experience of one patient may be a fluke and mean nothing.

Both POTS and CFS are poorly understood.  They share certain features.

Mast cell activation syndrome may overlap as well in many cases. The diagnosis is usually clinical.

This therapy must be done slowly with careful patient monitoring.

A  little dysautonomia, a little POTS, a spectrum, continuum? Maybe. Medicine is frequently gray. Black and white cut off points should be looked at critically.

A thought.