In Part I of Be Aware of Lyme Disease I gave you a basic rundown on what exactly Lyme Disease is and how it works. I also shared my weekly symptoms with you as they mounted before treatment and my symptoms after the first wave of antibiotic treatment.
I cannot stress enough the importance of sharing knowledge, symptoms, ideas, remedies, research, treatments, similarities, and questions.
So let’s start Part II discussing the CDC.
Why is sharing important? Because there is a HUGE gap between what the CDC requires of mainstream doctors for a diagnosis of Lyme Disease and treatment of it, and how Lyme Literate doctors and Lyme Disease experts are diagnosing and treating their patients. This means if you fear you have Lyme Disease, or you need Lyme Disease treatment and you do not have a Lyme Literate doctor or expert, you may not get the treatment you need, the diagnosis you need for your insurance to help you pay for it, and you could end up extremely sick for years on end waiting for someone to finally take you and your symptoms seriously.
photo courtesy of ydr.com
Basically, the CDC supports ELISA and the Western Blot blood testing for Lyme Disease. The ELISA test is an enzyme/immune response test and the Western Blot is an immunoblot test that helps to distinguish Lyme Disease from other diseases that possibly show up with the ELISA test. You can go here to read through all of the CDC information and requirements for Lyme Disease in depth.
(photo courtesy of the CDC)
There are three sections or “bars” on the Western Blot and according to the CDC each bar must test positive before they will consider a Lyme Disease diagnosis. These CDC guidlines are sadly outdated and the majority of mainstream doctors still follow them line by line today! Yet, I have read on the Lyme Expert websites that even ONE bar on the Western Blot Test can be “strongly considered a positive diagnosis for Lyme Disease”. It’s unfortunate to say the least, that the CDC has not updated it’s information, guidelines, or treatment protocols much over the years. Especially considering Lyme Disease is reaching epidemic numbers.
Imagine if so many tests are overlooked and stamped with a negative, yet Lyme is becoming an epidemic….that means truly that there are many, many, more Lyme Disease cases that are going untreated and undocumented. Let’s also keep in mind the discussion in Part I about how the Lyme bacteria have a cloaking ability to hide from testing and treatment, even when symptoms remain. It’s unsettling to me with this knowledge of how the Lyme Disease bacteria works, that the CDC is comfortable with outdated protocols, diagnostic tools, and treatments.
I had one bar on the Western Blot come back positive. My doctor explained to me the CDC guidelines for testing and I was tested again. That test came back negative, yet my symptoms continued to mount. When I took the first test, I felt like death. I was horribly ill. When I took the second test a few weeks later, I was having a relatively feel “decent, like I was going to live” day. Thankfully, my doctor was willing to treat me based on the first test and my mounting symptoms. Lyme Literate doctors that specialize in Lyme testing agree that it is of “utmost importance” that you only do Lyme blood tests when you are feeling 100% symptomatic. Otherwise, the testing could result in a false negative.
The CDC also has a “relaxed” timeline of treating Lyme Disease. Lyme Literate doctors and experts have a much more aggressive attitude toward diagnosis and treatment. They also diagnose and treat based on symptoms because of the cloaking ability of the bacteria, not just blood testing alone. It’s extremely important that you have a physician who has an aggressive attitude when it comes to treating you for Lyme Disease.
Read here about the Stages of Lyme Disease. But keep in mind, it can vary. Just because you don’t suffer from all of the symptoms or may have additional symptoms, does not mean you should not discuss Lyme Disease with your doctor.
I love my doctor although she is not trained as a Lyme Literate doctor and is not a Lyme expert. She was however diagnosed with Lyme Disease as a teen and one of the other doctors in the clinic has recently been treated for Lyme Disease. Lyme disease is very prevalent on the east coast, so I would say many of the doctors here (not all!) are informed with the basic tools. For now, in the initial stages of testing and treatment, I am happy with the results I am getting with her. She is willing to think outside the CDC box and be a bit more aggressive in treatment. However, with that said, eventually I will focus on seeing a specialist to do more in depth testing to make sure the Lyme bacteria has been tackled for good.
The moment I knew I had the right doctor for me? She’s not in a rush during my appointment. She listens intently. She considers information based on the whole person, not just the symptoms. She shows real concern about my health. She does not jump to conclusions. She offers information, ideas, and specific advice.
Finally at the end of my appointments she touches on each topic we have discussed to make sure she she isn’t missing anything… and most importantly, the words we all dream of hearing from our doctors but rarely do are said to me… “Do you feel like we have a plan? I don’t want you to feel like you’re leaving here without help.”
Just having an emotionally supportive doctor alone can give your health a much needed boost.
(photo courtesy of attainfertility.com)
You’ve heard of Amy Tan, famous author and film writer?
A few days ago one of my blog followers, a Physical Therapist in Washington state, sent me this article written by Amy Tan about her battle with Late Stage Lyme Disease. The PT referred to it as “riveting, appalling, and compelling”, and I would definitely agree.
It is an absolute must read.
The moral of the story?
Fight for your health. Educate yourself, regardless of the naysayers and eye rolling of people who just don’t get it, including family memebers. Keep track of your symptoms. Go to your doctor with a list. One list with symptoms, one with questions, one with requests and ideas for treatment. Be proactive. If you don’t like how they respond to you or if you feel they aren’t taking your symptoms or questions seriously, move on. Find another doctor who will, don’t waste time trying to convince your doctor you’re sick.