27 Apr 2018

Help finding a diagnosis


Dear all,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.


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 diseases 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 diseases 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 dx forum about my test results, because I want to be certain I do have Cpn. I will keep working with the Lyme doctor - two of the drugs she is starting me on: metronidazole & azithromycin are on both the Whelden and Stratton protocols 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.