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Avatar universal

3 yrs undiagnosed, getting worse, pcp washes her hands of me

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.  My 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 do not agree that this is the end of the story.

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 more labs found the igm again elevated, alk phos low, and albimun high.  Blood cultures were fine.

The ID dr does not believe it is the MRSA, but maybe a systemic infection.  He is testing for a lot of different things, including HIV and Syphillus.  I think he may believe that it could be Whipples Disease, as he mentioned it 2x.  
The symptoms fit, but so did the symptoms of lyme and addisons, and lupus and MS and so many different things.

I am hoping that someone has some advice here.

I am still waiting on labs, tomorrow I go to a functional med dr., and then to a Chronic Fatigue specialist in NYC.  
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Avatar universal
Goodness!!  I hope they find what is causing your problem!  That is a lot of tests!  
    I have heard that certain viruses or bacterial infections can hide and cause strange symptoms.
   On Mystery Diagnosis there was a young boy who was acting strangely - walking around in circles, writing in the dirt, etc.
    He had a Strep infection and the doctors couldn't figure it out because he had no fever.  A blood test finally revealed it after months!
     I certainly hope and pray that the lab work shows what's up.
Take care.

Helpful - 0
Avatar universal
THank you for replying.  I have seen 3 rheumy's so far.  One went so far as to be condescending and telling me to repeat after him..."I do not have lupus.."

saw a functional med dr that is concerned that there may be more allergies and an infection or virus.  

He took 25 vials of blood...is retesting everything  
Helpful - 0
Avatar universal
    I am so sorry that this is happening to you.  It sounds like you have left no stone unturned.  Lupus shows in lab work as elevated ANA - but your doctor doesn't think it's Lupus.  The blood tests are usually inconclusive and sometimes one gets a false positive or false negative.
     I would be interested to hear what your new doctor has to say.  And you might possibly have to see a Rheumatologist to get a proper diagnosis.
     In the meantime, I think a good healthy diet might help some.  There are some doctors that feel that eliminating nightshades such as potatoes, tomatoes, mushrooms and eggplant can help patients who have Lupus.
      Sometimes tonic water containing quinine also helps Lupus patients.
      Please let us know what your doctor finds out.
  We, on this forum, are very interested in knowing how our "friends" get on.    
wishing you the best
Helpful - 0

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