Avatar universal

sick for 3 yrs w/ debilitating mystery illness...endocarditis possible?

three years ago I came down with a MRSA infection that went cellular.  A month into recovery, I felt severe fatigue, trouble breathing and startling cognitive difficulties.  The MRSA infection recurred 4 months later in a new site and was treated quickly.  Around the same time, strange food allergies and severe gastro issues surfaced, as time went on the fatigue worsened, and was like nothing ever felt, the cognitive difficulties were rampant, short term memory loss, poor word recall,confusion, at times can't hold a coherent conversation. I also have spasms in my brain.   Also, severe dizziness and light headedness.  Can be dizzy upon standing, but also while sitting.  Any movement can make it worse.  Blood pressure goes from low to high, but is not always low when dizzy. Body temperature usually runs low, but when I am really bad I have a low grade fever in the 99's.  I also have recurrant bone pain in my legs, and spine.  Speaking can be too exhausting as well.  Strange episodes of walking fine at one point, and all of a sudden it hits, I slow, slow, slow and then can't move without assistance, my face goes blank and grey, hard to walk, legs are too weak, too hard to talk.  This sometimes will pass in an hour, and leave me severely fatigued for days or weeks.  Sometimes this can last for days before it passes.   My body is not working.  I am like a cell phone that cannot hold a charge.  I also have extremely reactive skin.  If you brush against my face or my arms it will leave a rash that burns temporarily and then is present on my skin for about an hour.  I had a skin prick allergy test and I reacted to everything, even the negative control.   I bruise very easily.  and m
y skin sometimes breaks easily with frequent cuts.
I have been to so many specialists and my pcp has given up on me and has diagnosed me as chronic fatigue by exclusion.
I maintain that I have not been the same since the MRSA infection.  She has refused to entertain that thought.  
My blood tests are generally fine, though my ANA is always high (rheumy says it's a phenomonem...I have no rheum diseases) 640 diffused.   My igm is elevated.
I have had an echo and they said it was fine. I do have a history of a slight mitro valve prolapse and they did find slight plaque in my corrodeds.  
Hematologist yesterday was the only one that listened and said, yes, I think you need to see infectious disease (pcp's office has been fighting me on this) b/c the infection might still be in your body.  THANK YOU!  This is what I have been asking.....
He did blood cultures and found the igm again elevated, alk phos low, and albimun high.  
Any thoughts?
2 Responses
612551 tn?1450022175
Sorry you haven't gotten any helpful replies, but reading all I can say is you have been punished way too much.  

You may get some inputs from a post on:

I think those who use that Community have experience with difficult mufti-symptom cases.

Sending a prayer that a solution is found for you, that's all I can offer.
Avatar universal
thank you so much for your kind words.  I will look to that board.  My hematologist has me seeing his ID dr. who is looking at numerous systemic infectious diseases
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