Help with Diagnosis/Treatment - Fatig... - Myalgic Encephalo...

Myalgic Encephalomyelitis Community

2,086 members651 posts

Help with Diagnosis/Treatment - Fatigue, Fog, etc

HoldenDeBagg profile image
1 Reply

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.

Written by
HoldenDeBagg profile image
HoldenDeBagg
To view profiles and participate in discussions please or .
Read more about...
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.

Not what you're looking for?

You may also like...

Chronic Fatigue and lymes disease

Good afternoon I am working through illnesses with overlapping symptoms in an attempt to find out...
smilingjane profile image

Did your journey into ill-health begin with digestive problems?

Hi Everyone, I was thinking tonight about an NHS chronic fatigue/ME programme that I attended many...

secondary chronic fatigue

Hello everyone I have recently been diagnosed as having secondary chronic fatigue due to lifelong...
smilingjane profile image

ME Flare ups and sleep problems

Hi everyone, I'm currently undiagnosed with CFS as I haven't had symptoms for 3/4 months yet.I've...

Call out for ME/immunologist private specialists

Morning everyone I was diognesed with secondary chronic fatigue with a lifetime of sleep...
smilingjane profile image

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.