File a Complaint with the Board of Medicine
Attached below are the instructions for filing a complaint with the Board of Medicine about physicians you may have had contact with in your journey to a correct diagnosis that did not act according to the law of the land, and disclose that there are two standard of care, and give you proper informed consent so you could make an "autonomous" decision regarding your health care.
These are the instructions: http://www.portal.state.pa.us/portal/server.pt/community/general_information/12501/how_complaints_are_handled/571973 The complaint form is attached.
NOTE: 1) you can email the completed complaint form but you MUST mail (yes, snail mail) the related attachments or backup documentation.
Below are different bases for filing a complaint that are justifiable:
1) you were not informed that there were 2 schools of thought, and therefore your right to informed consent was violated, and the consequence was a significant delay in a correct diagnosis and treatment
2) you were told that you didn't have Lyme disease because your test was negative according to CDC surveillance criteria, which the CDC says specifically are NOT to be applied for diagnosis. The CDC says that Lyme disease is a clinical diagnosis. If you have symptoms that are "classic" for Lyme disease, and link tightly to what the CDC has on their website (http://www.cdc.gov/lyme/signs_symptoms/index.html).
3) when the standard treatment failed, you were not screened for coinfections, and later were found positive for these coinfections (this violates even the IDSA, most conservative, guidelines that indicate a patient should be screened)
4) you were given the standard treatment and it failed, and your physician did nothing indicating some version of "you have had the cure" - this is called "failure to diagnose and/or treat". Some common ways for a medical professional to be negligent are, failing to perform the necessary tests (e.g. coinfections), failing to treat a known medical condition properly (they did not discuss the possibility of longer term treatment based on a second standard of care, or even as referred to in IDSA guidelines where they say a second course may be necessary).
The key is to demonstrate:
1) past tests that confirm a Lyme and coinfection diagnosis that the physician did NOT catch
2) the refusal to test based on signs and symptoms (any documentation of your signs and symptoms - get your medical records)
3) the refusal to diagnosis based on a negative test, even when signs and symptoms were classic
4) the refusal to treat based on a bulls-eye rash alone (the CDC says that there is no need to test when a bulls eye rash is present, an EM (bulls-eye rash) alone is diagnostic and should be treated
5) the refusal or ignorance of testing for coinfections when not cured
6) not recognizing a lyme rash (which is then allowed to progress to disseminated disease)
7) the impact of delayed diagnosis and treatment, severity of the progression of these diseases
8) the violation of your right as a patient to informed consent and the existence of 2 standards of care
Also - any commentary that was inappropriate by a physician should be reported such as - there is no such thing as sleep disorders related to Lyme disease, or dismissive behavior that suggests no credibility to your illness, especially if it is specifically tied to Lyme disease... and I have heard many many of these comments from patients.
We have NOT been able to ascertain whether there is a statute of limitations on complaints filed with the Board of Medicine. We know that in malpractice cases before the civil courts, the limitation in PA is 2 years from when you discovered (the discovery rule) that malpractice had occurred. For example: once you learned that a positive test is not required to diagnose lyme disease and your doctor didn't diagnosis you because the test was negative - at that point, the 2 year clock starts ticking.
My recommendation: anyone that has a clear-cut reason to complain (based on the above) should file a complaint regardless of the 2 years, because these need to be seen by the Board. If they come back and say you are outside of the time period, fine, at least it got in there.