I have been diagnosed with Lyme, chronic lyme, ehrlichiosis, bartonella, babesia, ehlers danlos and long story short, have alwasy felt (and been told by many Drs who are not my actual providers) that it all seems to be auto-immune. Today I finally go see a rheumatologist all ready for him to do blood tests, etc, and he tells me I dont "look like I could have possibly had an auto-immune illness for 20 years" and tells me I 'may' have fibromyalgia and thatmy joints are loose. I do not have a classic butterfly rash but I do get rashes, especially on my chest/back, and the sun does make them worse. They do not, however, raise off of the skin - more blotchy, etc. I have horrendous joint pain, some swelling, low grade fevers and multiple weird things that dont fall into a category (or fall into LOTS of categories). Looking for anyone who has been sick for a long time and received a delayed diagnosis (which they know is CORRECT) and want to know how you got it and what suggestions anyone has for me. I dont WANT to have Lupus but what I DO want is some diagnosis which is accurate and makes sense so I know how to proceed with life and what to watch for with my children (in the case something is genetic or tends to run in families). I realize auto-immune is tricky but I am so upset the dr didnt even try...
thanks so much!!