i would like to add in here, i went to a lyme forum, from my understanding theres a whole population out there that believe in chronic lyme, dispite unable to show verifiable evidence, its almost like a cult. from my understanding these llmd that charges out of pocket, raises a red flag already, and they seem to agree and say what you want to hear as fact. They do have a few points that are correct, lyme is not easily treated when in the late stages. One other i noticed is that llmd chronic lyme believers use "chronic lyme", while other doctors use late stage-disseminated lyme disease, essentially means the same thing, but they say that to avoid probably legal issues.
-one of the tests that lyme doctors seem to use is IGENEX, they claim that it is accurate testing, but they were questioned by agencies, and only got the companies words "that our testing is sufficient within the laws of the state".
Heres the catch, even the lyme doctors and patients dont even believe that its accurate, they dismiss thier own test they promote, these igenex tests are very expensive, up to 200-1200 per test, the more expensive one is using co-infection panels. the lyme doctors claim they can diagnose lyme as symptoms and not by tests, there is something very wrong. so many diseases can mimic lyme, and lyme can also mimic diseases as well, so how can they tell the difference.
-Sometimes other doctors suspect lyme disease, but they will only do the tests that the cdc has put out.
- i contacted the igenex for cost of test, and was amazed by the expensiveness of the test. Igenex and some other labs will not be covered by insurance, so it can end up super expensive. Igenex and some other labs are rejected because of the reliability of thier test, and its not approved officially.
-the other big problem is that llmd and the patients are prescribed with antibiotic regiments that can last several months to more than a year, this is extremely hazardous, as long term use has side effects, and make yourselves vulnerable to antibiotic resistance, this is also promotes anti-biotic resistance as well. Many people actually get sicker while under this.
-also they proposed some wierd herb/supplement protocols which are also questionable.
When i question people about this, they become incredibly defensive, and start bashing me on the posts and calling me a liar(on other forums).
I think this is more like a conspiracy then a hoax, between the llmd and the lab test companies, because they know they can make money off of it.
llmd and lab tests that they order do not cover insurance. theres even laws protecting doctors/tests from being prosecuted or reprimanded for unethical conduct for being doctors.
When i first developed my undiagnosed cause of PN, i suspected lyme, but after few weeks of research i dont believe this is lyme, although i was in a tick area in the bay area, i took every pre-caution, wore chemical haz suits, gloves, deet sprays, "socks for the shoes". i was doing some conservation work.
You can go out of your insurance and pay out of pockets to see these doctors, but be warned do so at your own risk.
I also looked online about lyme doctors and thier patients, some of the lyme doctors caused deaths of patients with thier treatments, and some famous ones were even sued at one point.