There isn’t a reliable test for Lyme and it’s associated confections. The Western Blot test is the best test available but it is deeply flawed and often returns false negatives (about 60% of the time). Additionally, not all labs are created equal. I’ve seen people with varying results depending on the lab used. This is why most competent, Lyme literate doctors also rely heavily on a clinical diagnosis. The persistence of Lyme after antibiotic treatment is actually not controversial (or at least it hasn’t been for more than a decade). There are many scientific studies that prove the infection persists after antibiotic treatment. In fact, about 20% of the more than 330,000 annually reported cases go on to be chronic. These cases provide significant, debilitating symptoms that have no universal treatment protocol and often leave many to struggle through years of trial and error treatment approaches with many doctors and specialists. There is a new book “Bitten” that provides real evidence the disease was actually weaponized by the US military after World War II. There are well document programs researching the weaponization of tick borne diseases in the 50’s through to 1975. A New Jersey congressman recently proposed an amendment to require the pentagon to investigate whether or not our government purposely or accidentally released a weaponized infection on the US population - specifically citing research programs at Plum Island (in Long Island Sound) and Fort Detrick. This amendment passed in the House of Representatives. While there are many who recover from symptoms with a 3 or 4 week treatment, there are tens of thousands every year that do not. Because the tests are unreliable and many uninformed doctors rely heavily on those tests many people go without treatment. The further from the original infection before treatment, the higher the likelihood the condition will become chronic. This is why finding a Lyme literate doctor as quickly as possible is so important. Lastly, someone mentioned Dr. Alan Steere in an earlier post. He is a chronic Lyme denier despite the many scientific research studies that have come out disputing the claims he has made for the last 40 years. Without going into the details, he (and Yale) have a financial interest in its denial. My suggestion to you is to find a Lyme literate doctor by engaging in online Facebook group to ask for doctors in your area. Divine Lyme Disease Support and Education is a good group. Spend the money now on a good doctor and save yourself from the risk of being in the wrong 20%. Be well and good luck.
Thanks for this.
Unfortunately, we've found there are no Lyme literate doctors around us. We'll likely be going well out of our way. We have appointments with people NEXT YEAR (yes, we called multiple LLDs, and they are fully booked). We're looking to make arguments to have our locals give the medication now, prior to seeking out doctors. As well, the LLDs are asking for $3k per office visit.
I was the one who mentioned Steere, and I know he is a Chronic Lyme denier (doesn't believe antibiotics are treating the central Lyme bacteria after the initial treatment, but rather other co-infections or still other viruses, like Epstein-Barr). I only mentioned him because he does believe there is such a thing as Lyme Arthritis, which is caused by either damage to joints from untreated Lye or else an autoimmune response which obviously can't be treated by antibiotics. He is one of the few doctors that use DMARDs for this, common drugs for people with RA, but people with Lyme Arthritis don't present as RA to rheumatologists.
If only we could get the Rheumatologists to actually talk to the LLDs. But it doesn't appear as though that is happening.
At the very least I learned 2 things in this thread:
1. Many doctors in Connecticut prescribe the meds prior to test results, if they see symptoms, as variable as they may be.
2. Many patients aren't quite aware of what the tests actually say when the doctors tell you you are negative or positive.
I am glad we requested a transcript of my daughter's test results, or we would have gone away not knowing that her so-called negative was actually a positive of the ELISA test, and then 3 bands Lyme-reactive on the Western Blot, which of course earned her a negative overall.
