@SOC @Sushi @Gingergrrl Did the Holter or Zio find anything useful? Also, what was Randy Thompson’s opinion on all this, if you know. thx!
My guess is that your cardiologist is looking for non-ME cardiac reasons for your symptoms, so he wants to run tests to look for structural/functional cardiac problems. If you have heart problems independent of ME/CFS, the tests will help to find them and you may get some useful treatment. If your symptoms are ME-related then the standard cardiac tests are not likely to be grossly abnormal. That doesn't mean there aren't problems the cardio can't help with, just that he might not look in the right places to find them.
The Holter didn't change my treatment plan, but confirmed CFS in Dr Lerner's evaluation
A. Abnormal Holter Monitoring
Abnormal T-wave flattenings and inversions are found in patients with the US Centers for Disease Control defined CFS. This finding has been tested statistically, and we can now say that 90% of patients with CFS have abnormal 24-hour monitoring. This is a biomarker. The absence of abnormal Holter monitoring leads us to believe that CFS as the cause of fatigue is less likely. The T-wave of the electrocardiogram records repolarization (electrical recovery) of the left ventricle after every heartbeat in preparation for the next heartbeat. The normal T-wave is upright. With increased heart rates the abnormal T-waves occur. Abnormal oscillating T-waves occur with exercise. The symptoms of CFS are worsened by exercise, a striking coincidence.
http://www.treatmentcenterforcfs.com/faq/index.html
I'd say the reason to do a Holter test is to find out if you have arrhythmias that could be causing your symptoms independent of ME/CFS. I didn't, but I did have the T-wave flattening and the abnormal oscillating T-waves walking up a flight of steps (iirc) that Lerner finds in ME/CFS patients. I think a cardiologist would not consider either of those things significant, however.
Bottom line: There's probably no harm in doing a 24- or 48-hour Holter test just in case you have arrhythmia. It's probably more a rule-it-out test than anything that's likely to lead to treatment, but you don't know until you do the test.
If your cardiologist is a civilized human being, you could show him these couple paragraphs from the
ME/CFS Primer for Clinical Practitioners:
3:5 Autonomic/Cardiovascular Disturbances
Autonomic dysfunction, if present, is manifested by an inability to maintain an upright posture or feeling faint or weak upon standing (orthostatic intolerance). In such cases, tilt table testing may show neurally mediated hypotension (NMH) or postural orthostatic tachycardia syndrome (POTS). Some patients with ME/CFS may complain of heart palpitations and show a persistent tachycardia at rest. Holter monitoring may reveal benign cardiac rhythm disturbances and non-specific T wave changes such as repetitive oscillating T-wave inversions and/or T-wave flattening. 54 Suspected diastolic dysfunction has been documented in some patients with ME/CFS using echocardiography. This diastolic dysfunction (improper ventricular filling) may be due to a lack of energy at the cellular level. 55 Low blood volume has also been found in some patients with ME/CFS. 56
It may encourage him to do a TTT (if he hasn't already) or treat for low blood volume (or test for it, at least).