Myalgic Encephalomyelitis Community

Help with Diagnosis/Treatment - Fatigue, Fog, etc

Male, 44, 6'3", 220 lbs. Late-summer 2013, OVERNIGHT, massive fatigue set in, a significant loss in focus, concentration, short-term memory, body aches, chronic low-grade fever, occasionally racing heart (high BP and resting pulse of 140 or higher). Never had any problems like this before. Never struggled with depression or anxiety. No traumatic life events around this time.

Bloodwork revealed elevated hemoglobin + hematocrit, Polycythemia. JAK-2 has been negative several times. No determination as to what's causing "secondary" Polycythemia.

I receive phlebotomies once a month Polycythemia + baby aspirin daily + B-12 + D (low levels). Also: Vyvanse for fatigue, Amlodopine for BP. Low T (190).

Good EKG, though diagnosed with supra ventricular tachycardia. Sleep studies show moderate obstructive sleep apnea, but doctors don't believe its the issue. CPAP further fragmented sleep, even after changing masks, pressure settings, over months. Not using CPAP now, per Dr. Right kidney function: 12%. Drs. say this isn't causing problems.

Putting on shoes - Herculean task. Sitting upright for long periods - impossible. Can't read/enjoy films anymore, or work most days -- can't think of words, read for research, etc. Can't coach, teach, do yoga, volunteer, etc., like before.

Chronic Fatigue Syndrome + Lyme suggested by Drs a year ago. No luck getting referrals to appropriate Docs.

Help with diagnosis, possibilities, doc suggestions? Thank you so much.

1 Reply

OK - I don't understand most of the results you are mentioning, however from the symptomatology it does look like CFS/ME.

Why are you having problems getting referred to the relevant specialist? Your DR is looking at it as if its CFS/ME so he should be happy enough to refer on.

What part of the world are you in?

Good luck.


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