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**Comment**
A real problem for sure and one that most Lyme/MSIDS patients experience. I know patients who have what I term, “White-coat fear,” a type of PTSD from being abused by medical professionals.
This is why I typically advise patients who suspect tick-borne illness to bypass mainstream medicine altogether. These folks are woefully uneducated and will more likely tell you to make an appointment with a shrink than to consider TBI’s. For some reason these “professionals” are fine with telling you “it’s all in your head,” rather than even considering you may be infected with things that can invade every organ in your body, or even just admitting they don’t know the first thing about it.
Even IF they are willing to test you, current CDC 2-tiered testing misses a majority of cases. There are few doctors in mainstream medicine who will treat you without a positive test. Then, even IF you somehow manage to test positive, they will essentially treat you with the CDC’s antiquated and unscientific Lyme guidelines – or 21 days of doxycycline, which research has proven repeatedly to be inadequate. This treatment also completely ignores coinfections which are often present and require different medications.
You know the saying…..“Insanity is doing the same thing over and over and expecting a different result.” Yet this is exactly what ‘authorities’ and mainstream medicine have done and we are all supposed to be fine with it.
You will save yourself time, money, effort, and mental anguish by getting to a Lyme-literate doctor asap. Time is of the essence. Everyone admits that early detection and treatment is imperative.
Reminder: IF you have the EM rash, you HAVE Lyme disease. Period. No testing required. IF you do not have the EM rash, you could still be infected. If you test negative – you could still be infected. (Very much like the abysmal testing for COVID-19)
In my opinion, your local support group is the best place to find these LLMD’s. Patients in these groups have first-hand experience with costs, approach, and other helpful details. Finding a doctor is only step 1 in a very lengthy journey, but it’s an important step. It’s also not uncommon to see numerous doctors on this journey. You can access support groups in each state by scrolling down the website and looking on the right. It’s under “Lyme Resources.” Click on “Find a Lyme Support Group.”
The best word of advice: NEVER, EVER QUIT. It’s your health – fight for it.