Looking for care provider for my mother - Mothering Forums

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#1 of 3 Old 07-16-2012, 03:42 PM - Thread Starter
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Hi everyone,


My mom has been sick for about the last 1 1/2 months.  At the beginning she was in the hospital for Frederick Memorial Hospital for 9 days with uncontrollable fevers, headaches and joint pain.  She was also dizzy and had some fluid in her lungs.  She had multiple tests, everything came back negative.  Blood tests for all kinds of stuff, ranging from STDs to Lyme Disease, heart lung, intestinal, etc scans - everything came back negative.  She also had a spinal tap - negative for meningitis.  They released her because her fevers were staying down.  No diagnosis.

For the past few weeks she has been treated by her family physician for PMR (Polymyalgia Rheumatica) and is now testing positive for Lyme Disease and Ehrlichiosis, as well as as Cytomegalovirus.  He has put her on doxycycline.  He is confused about how she is also testing position for the Cytomegalovirus.  She was seen in the hospital by an infectious disease specialist, who we have been trying to get back to see, but is refusing to see her, saying that she has done everything she can and can't help her. 

She can't drive.  She is weak and has pain in her arms.  She gets dizzy and tires very easily.  She is only 52 years old.  She has physical therapy and occupational therapy come to the house to help her get some strength and range of motion back.

Now my mom is saying she wants to see a different specialist.  Which I think is great!  She said something about The Arthritis Center at Johns Hopkins.  Does anyone have any experience with this place?


I am 37 weeks pregnant.  I am exhausted by all of this.  My dad passed away very suddenly in April and now all this.  I just don't know the right way to go. 


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#2 of 3 Old 07-17-2012, 08:45 AM
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Get her to a Lyme Literate Doctor (LLMD) fast.  Look to ILADS.ORG or Lymediseaseassociation.org for referrals in your area.  I am no physician but she probably has cytomegalavirus, because the Lyme and co-infections are latent and has impaired her immune system.  Don't wait and don't listen to the ID Specialist who says all that can be done has been done.  She likely needs longer-term antibiotic treatment.  I've been there.  Don't wait and don't go to the wrong doctor.  Watch Under Our Skin on Youtube to better understand this.

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#3 of 3 Old 07-22-2012, 07:28 PM - Thread Starter
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Thanks for the advice.  I found a Lyme literate doctor that is pretty close to where we live.  I made her an appointment for Tuesday.

Thanks again!! :)

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