Hi everyone. I'm posting here because I'm hoping to reach a broad range of people with other experiences since thus far the doctors have not been able to diagnose me.
My illness started in October of 2008 with high fevers. I went to my Dr. initially thinking I had the flu. She ran some tests and strangely I tested positive for Lyme. I did not recall a tick or being bit. I was treated with 3 weeks of doxy but I did not improve and had several relapsing episodes of fevers. In November of 2008 I was having another episode of fevers but was also having lower right quadrant pain and some breathing symptoms so I went to the ER. I was admitted to the hospital and spent a week there. I was tested for every infectious disease known to man and everything was negative.
Bloodwork showed very high SED and CRP, anemia and abnormal liver function. I had CT scan which showed enlarged liver. I had a bone marrow biopsy which showed nothing specific, echocardiogram was fine, lung function tests were fine. I was released and told I probably had a bad virus.
Fevers returned over the next few months, more CT scans were done and finally I had a liver biopsy which showed pelliosis. This can be caused by oral contraceptives (which I was on for years) or bartonella. Based on circumstantial evidence I was treated with six months (ending October of 2009) of doxy for Bartonella. Fevers disappeared, all bloodwork normal....I was cured!
Fast forward to July of 2010 and I have now had very minor monthly fevers of around 100 degrees which last 1-2 days. Then this month, I fully relapsed and have had the high fevers and it has been going on for over a week again. The fevers are accompanied with normal fever symptoms of muscle aches, headaches, etc. I also have drenching night sweats thoughout the night. SED rate is 100 (0-20 normal) and CRP is 89 (0-5 normal). All other bloodwork normal except ALT is 41 (0-40 normal) which they don't seem concerned by yet.
None of the specialists seem to think that I have any of the diseases in their area. ID says that this is not infectious. I am having a CT scan on Friday as past ones have shown some lymphnode activity so they want to see what everything looks like now. I am also seeing a Rheumatologist after that but I have seen them before and they have just told me that they have nothing for me.
What else should we be considering?? Does anyone have any experiences or advice that may help me get a diagnosis?