Help finding a diagnosis
Many, many thanks to you all for putting this website together. I have had slowly progressing CFS for 20 years now, but in the last 3 years it has got significantly worse, following a collapse and hospitalization a few years ago. Both I and my sister have been ill since infections in 1994/1995 - she became ill and got adult onset asthma, which is one reason I suspect Cpn.
When I collapsed a few years back I definately had a severe infection, because the bloodwork they took seemed to indicate that (high white blood cell count) and I had extremely low blood pressure (notes don't say the low point but it was 82/45 even after 3 litres of IV fluids), which I think can occur in a bacterial infection (not sure about CPN - but perhaps it could have been a secondary infection). At this time I was really ill with severe asthma for a prolonged period.
Since then I have become really ill with severe asthma several times, and now I have it again. It is really difficult to get any doctor to take me seriously when I ask about Cpn and it doesn't seem easy to get a definite diagnosis even if testing is done. I am trying to see an infectious disease doctor, but if that doctor isn't willing to treat me I have no idea what to do. On his website Paul Jaminet mentions that doing a white blood cell count before and 1 week after starting antibiotics might be a reasonable diagnostic test.
From the comments section on his blog:
- “I would recommend doing a CBC just before and a week into antibiotics, as a diagnostic check for C. pneumoniae.” At the risk of sounding obtuse, I just want to be sure that I understand: Are you saying that a reduction in WBC count at 1 week into antibiotic treatment would indicate the presence of a C. Pneumoniae infection? (Due to the host WBCells being killed off along with the C. Pneumoniae bacteria?) ... November 14, 2010 at 2:32 pm
- Yes … Normally white blood cells die after ~45 days and are replaced … This kills any bacteria infecting the white blood cells, and assures a continuous flow of (presumably uninfected) new white blood cells from the marrow … C. pneumoniae has evolved ways to suppress apoptosis (cell death) in white blood cells, helping it maintain infections … so C. pneumoniae infected white blood cells live a very long time. But antibiotics inhibit the apoptosis suppression, causing infected white blood cells to die off suddenly."
Maybe I could persuade my doctor to try antibiotics for a few weeks and see if this test would work - does this seem like it should be diagnostic or is it more likely to be hit and miss? Maybe nobody knows but I thought it was worth asking. Also, if anyone has any advice on finding a doctor who might be willing to help in the Boston (USA) area I'd be really appreciative.