I am a lucky Lyme victim.
As opposed to an unlucky Lyme victim who searches for years to find a successful treatment protocol.
My Internal Medicine MD (and General Practitioner) had been taking care of my health for over 10 years when I collapsed with a “flu” in October, 2006. My flu quickly spiraled
into over 125 symptoms (most of which I had suffered with over the decades at various times).
Given my long-term relationship, my primary care physician took my symptoms seriously and never wavered in his medical support. We explored Lyme disease and the numerous co-infections together while he directed me to experts along the way who could correctly diagnose my condition and prescribe the appropriate medication.
When you are in terrible pain, all you want to do is make it go away. Am I right? This leads to a desperation that makes each victim vulnerable to treatment switching, and unfortunately, treating such a complex disease takes a long-term strategy – the longer one is sick, typically, the longer it takes to eradicate.
In 2006 there were fewer resources then there are now so I had to educate myself. The down side to an educated patient is the arrogant doctor who wants to be the final authority whether he really knows about Lyme or not. Don’t let those so called experts discourage you.
The search for a good LLMD is critical to recovery, however, for many sufferers there is no such thing – at least not within a reasonable geographic area. So you may need to educate your doctor.
Again, I was lucky.
I sent my doctor news articles, peer-reviewed medical articles, books and cds. I even emailed him links to You Tube medical presentations by the top Lyme doctors in the country. And my doctor explored with me instead of digging in and clinging to a preconceived medical “stance.” (Such as , “I don’t believe in chronic Lyme disease.”)
So, if you are fighting with your doctor, move on. However, if you have a compassionate doctor who wants to help, start by giving him/her a copy of Dr. Horowitz’s book, Why Can’t I Get Better?
Follow up by requesting a poly-clonal blood culture from Advanced Lab Services (see http://lymediseaseresource.com/wordpress/best-test-for-diagnosing-lyme/). The test was originally developed in collaboration with Dr. Joe Burrascano and eventually Dr. Eva Sapi. The lab continually works to keep its standards beyond reproach in spite of the negative PR spread by CDC and others. Thankfully the test will soon be available to other countries.
If you currently live outside the US or in New York (places that don’t cooperate with the lab in Pennsylvania) it may be worthwhile to book an appointment with a LLMD in the US (or in CT if you live in NY). Desperate times call for desperate measures, right?
Meanwhile, if we can approach our disease with knowledge, and share that knowledge with our regular doctors, we can hopefully help other Lyme sufferers who may otherwise remain un-diagnosed.