Help Educate Your Medical Doctor on Lyme Disease

Help Educate Your Medical Doctor on Lyme Disease

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.

(Visited 95 times, 1 visits today)
Subscribe to Jenna's Lyme Blog
Yes, I want to subscribe. I understand I will only receive one email each month when there are new posts.
This entry was posted in Ask the Doctor, Biofilm, Chronic Lyme Disease, Coping with Lyme disease, Diagnosis of Lyme Disease, Jenna, Lyme Disease Symptoms and tagged , , . Bookmark the permalink.

5 Responses to Help Educate Your Medical Doctor on Lyme Disease

  1. Julie says:

    Hi Jenna! So, I’ve been sick with a mystery illness for more than 8 years. It started about 4 weeks after the birth of my last child. Its a constant horrible flu-like feeling and a myriad of symptoms like brain fog, memory problems, bone pain, general severe malaise, etc. I live within a couple hours of a known lyme doc. I had the Igenex test done through him for lyme and some of the other tick borne diseases, but they all came back negative. I was devastated to not have an answer after the years of searching for an answer and spending a small fortune on testing. Since the Igenex tests were negative, do you think its worth it to try this culture test? Is it done differently than the Igenex tests and is it more accurate? Thanks in advance for any answers you can give me!

    • Jenna Seaver says:

      Hi Julie – How long after you started feeling sick were you tested? I was also diagnosed negative with the western blot but positive with Advanced Labs…the lab culture actually grows spirochetes from your blood, but the longer you have been sick the longer it can take to grow the bacteria (my culture was 4 months). The other variable is the species of Borrelia you may have…the western blot was designed around one species (B31) and yet there are over 200 possible.

      Your best bet is the Advanced Lab polyclonal test that will check for more than one species and grows the actual bacteria AND verifies it with DNA testing.

      It worked for me and I hope it will help you too.

      Best wishes,

      Jenna

Leave a Reply

Your email address will not be published. Required fields are marked *