Help finding a diagnosis

Dear all,

Many, many thanks to you all for putting this website together. I have had slowly progressing CFSi 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 infectionsi in 1994/1995 - she became ill and got adult onset asthmai, which is one reason I suspect Cpni.

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 antibioticsi might be a reasonable diagnostic test.

From the comments section on his blog:

http://perfecthealthdiet.com/2010/11/the-vanderbilt-protocol-for-multiple-sclerosis/

  • “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 deathi) 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.

Boston area doctor, anyone?

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

Thanks MacKintosh for replying. I will repost when I have seen the infectious diseasesi specialist, hopefully soon. If I can't get anywhere then I am seriously thinking of quitting my job and going back to the UK (where I originally come from), as at least if I take a break from work there, I don't have to worry about health insurance. Maybe I can find a doctor there...

Well I have had mixed success in finding a specialist, but I did find a Lyme specialist - and they were able to do some lab tests for me. I think my GP/PCP stymied my recommendation to the infectious diseasesi person at Mass General - but they may not have helped me anyway. Critically I was able to get tested - and after 20 years of looking I finally found some positive infection.

The Lyme specialist I am seeing thinks I have Lyme disease as well, which I guess is possible, but I need to read up more on those tests and on Lyme disease. I will post a new question on the dxi forum about my test results, because I want to be certain I do have Cpni. I will keep working with the Lyme doctor - two of the drugs she is starting me on: metronidazoleiazithromycin are on both the Whelden and Stratton protocolsi and she also has me on Cephradine, which I guess is for the Lyme. I will read up a lot more on the protocols and come back to the doctor better educated next month. I may be able to help people in the Boston area looking for a specialist in the future.

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