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NightBefore 03-15-2012 05:21 PM

Newly diagnosed with questions!
So I am newly diagnosed. Here is my history/story.

Back in 2008 I saw a local rheumatologist because 18 months earlier I started having joint pain and swelling in my ankles and feet a butterfly rash off and on on my face and my skin was very sensitive to sunlight. I have had Raynaud's since 2000 and eczema since I was about 3 years old. He did all kinds of blood work which was all negative- including an ANA and IgG IgM AB. He treated me with Plaquenil & Prednisone. I felt great while on both.

fast forward to February of this year. We just finished building and moving into our new house- very stressful. I had been feeling not well for about two weeks. I felt like I had the flu- body aches all over. I would have cold chills and then have intense hot flashes and sweat. I was running a fever up to 101.5 and had horrible headaches. The strange thing was during the day I felt okay (I use that term lightly) and in the evening is when my symptoms would ramp up. I went to the local walk-in clinic and he ran some blood work. This is what was out of range:

Creatinine, serum 0.53- low
calcium, serum 8.6- low
Alkaline Phosphatase 480- high
AST 244-high
ALT 209- high
ANA Direct Positive Abnormal

He then sent me to a GI for my elevated liver enzymes and a rheumatologist to be screened for lupus. The rheumatologist and GI ran more blood work. This is what was out of range:

Epstein-Barr Anti-Diffuse 1:80 High
Complement C4, Serum 48 High
Urinalysis Casts Present Abnormal- Hyaline casts
Glucose, Serum 48 Low
Alkaline Phosphatse 281 High
AST 66 High
ALT 85 High

Rheumatologist ruled out lupus. GI also ordered an ultrasound and CT of my liver. On ultrasound my liver appeared slightly enlarged and 2 weeks later when my CT was done it looked fine. I then asked to be tested for Lyme. This is what we got:

Lyme, Total AB Test/Reflex
Lyme IgG/IgM AB 1.13 High
Lyme AB Interp., EIA Positive Abnormal

IgG P41 Ab. Present Abnormal
IgM P41 Ab. Present Abnormal

Before the western blot came back I had obtained the prelim results and seen my primary care dr. She started me on Doxy (going on day #3) and reffered me to an Infectious Disease Dr. my appt is next Wednesday. I will add that all my lab work has been done through LabCorp. I have read some posts on here about them not testing for all the critical bands. My symptoms have persisted and increased some. The fatigue and joint pain are the worst. I am trying to prepare myself for my appt with Infectious Disease on Wednesday. What are some questions I should ask him? I am concerned about co-infections (I think that is what they are called). Are these present in all patients with Lyme? And I guess the biggest question is do I really have Lyme? I think I do.

Thoughts, suggestions, comments

jenj770 03-16-2012 05:16 AM

Re: Newly diagnosed with questions!
With all of these symptoms and "abnormal" labs I would definitely try to see a qualified lyme doctor - an LLMD (lyme literate medical doctor). An infectious disease doc is not going to be able to help you if you have LD. If an LLMD suspects Lyme, you will probably be retested at Igenex Lab in Palo Alto California (your blood will be sent there). To rule out LD you really do need to see a lyme specialist. If you don't have LD you could then see the infectious disease doc for further evaluation.



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