Avatar universal

Is it CFS? Life Has STOPPED - Fatigue, Tachyarcdia, Polycythemia, 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.
3 Responses
1530171 tn?1448129593
A study of 132,000 subjects at Intermountain Medical Center, showed  an increased risk of hypertension, heart failure, diabetes, and renal failure for those who were vitamin D deficient (0-20 ng/ml).

I don't think you should be looking at differential diagnosis, only causes
of your secondary physiologic polycythemia and correcting your vitamin D
deficiency at present.

The million dollar question: Because of the sudden onset of your symptoms leading to your secondary polycythemia, would a single hypoxic event cause increased erythropoietin production responsible for your polycythemia, or was it the  'rain barrel effect", due to  hypoventilation   from periodic breathing and oxygen desaturation (sleep apnea), which your doctors have already ruled out as a probable cause.  Why and how's that?

It is imperative that you do not pursue any "wild goose chase" at this point.
The CFS and Lyme's disease suggestions will only complicate matters for you, being extremely challenging conditions to diagnose and to treat,
which would take years to achieve. Chronic Lyme's disease has put almost the entire medical system in denial (of its existence) and CFS receives  little respect from the medical community, with no known medical cure,
only symptom management medications.
You get a script from your doctor tomorrow for that, right?

So, to sum up, you have 2 very real and solid diagnosis, which can explain most of your issues. Resolve these and then you can try to deal with whatever remains unresolved.

Some suggestions:
Sublingual methyolcobalamin B12 and D3 drops  are preferred.
If on higher D3 like 10,000-50,000 IU make sure you take K2 also to ensure the metabolized calcium goes to the joints, bones and teeth, instead of soft tissues. Consider K2 as a smart calcium driver.

Moderate sleep apnea is enough to cause impaired hormonal production.
Never sleep on your back as this position, breath through the nose only,
use the diaphragm for breathing and consider re-learning how to breath
properly. The normal breathing website has over 400 pages of great information, including free exercises you can do to optimize your breathing patterns, all based on the renowned Dr. Buteyko Breathing techniques.
After you have done it for a while, your subconscious will pick it up
Do not underestimate the value of this. It could be as important as restoring your vitamin D levels!
According to Dr Park, an expert in this field:
"One of the most important reasons to breathe through your nose is because of a gas called nitric oxide that’s made by your nose and sinus mucous membranes. This gas is produced in small amounts, but when inhaled into the lungs, it significantly enhances your lung’s capacity to absorb oxygen, increasing oxygen absorption in your lungs by 10-25%."

Nitric oxide is one gas that could be one of your best allies!
There have been at least 60,000 (not a typo) studies on nitric oxide.
Some benefits regarding your case:
• Regulates blood pressure by dilating arteries
• Reduces inflammation
• Improves sleep quality
• Helps with memory & cognitive function by improving neuro-transmission

You have heard of nitroglcerin, right? It helps with heart issues.
Well nitroglycerin  releases nitric oxide which relaxes narrowed blood vessels, thus increases oxygen and blood flow!

If you want to know other ways to increase Nitric Oxide, let me know.

I hope this helps, however, my comments are not intended to replace
medical advice.

Best wishes,

Avatar universal
Did you ever get a diagnosis? It sounds as if you have CFS - though those who have Lyme's would tell you you have that. You need to find a doctor in your area who will take you seriously. Where do you live?  The good news is that you recently started getting sick. That means you have a better chance of getting better.
12546137 tn?1474686042
Have your symptoms resolved? I hope you're better. If not, and if it's CFS, which it sounds like it potentially could have been, LDN (Low Dose Naltrexone) has been a HUGE relief for me. Must get it through a compounding pharmacy though as they do not manufacture it in the low dose necessary for auto-immune issues. I also changed my habits to include living at about half capacity, and allowing myself all the rest I can, taking mornings slow, lots of prayer/meditation time, small workouts- enough to prevent deconditioning, but not exasperate symptoms, vitamins (B-100, pantothenic acid,  viracillin- which is activated humic acid). I am just hoping things resolved for you quickly, and that you're back where you were before the incident...
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