Because Being Informed is Important

Wow. I haven't written in this half-assed "blog" for a long time, but I have some things to share regarding my plea last week to watch "Under Our Skin" - I believe it's On Demand and on Netflix, and the full-length YouTube version is here:
https://www.youtube.com/watch?v=2JgR_Jfbhv8

First, an explanation of why I'm asking everyone to watch this documentary:
I don't want anyone - not even my worst enemy - to experience what I went through. I'll try to condense this story as much as possible.

In the fall of 2011, I went on one of two camping trips with my students that year and became very very ill on the second day. Severe, flu-like symptoms and intense inner-ear and neck pain. I recall asking my boyfriend to check the base of my head for ticks, but he didn't find any. I took a bunch of Vitamin D and green tea and went back for the second camping trip a couple days later. By this time, the flu-like symptoms had subsided, but the ear pain had progressed to my head and neck.

Severe cold symptoms followed every month after, as well as pain and fatigue. My PCP prescribed steroids several times. I saw specialist after specialist after specialist. I saw three different ENTs. Was it the cyst in my sinus cavity? No, said my ENTs. Too small to be responsible for pain. Occipital neuralgia? The pain had become near-debilitating, and a pain management specialist had declared I needed a steroid shot in my neck (thank goodness I accidentally missed that appointment). Months later, my symptoms had spread to the nervous system; I had numbness in random places as well as sharp, shooting pains all throughout my body that would come and go. I had been dealing with what I thought was an ankle injury - was going through PT, trying to help the swelling and pain, etc. He finally sent me to an ankle specialist at University of MD, who had the sense to test me for Lyme, but it came back negative.

FACT: The blood test for Lyme is extremely inaccurate. MANY people infected with Lyme disease will NEVER test positive for Lyme, but will respond to treatment. Last year, the state of Virginia passed a law requiring doctors to inform patients of this inaccuracy.

I proceeded to more specialists; the pain had become so disruptive that I was missing a lot of work. I began to experience cognitive symptoms - dizziness, confusion, memory loss, panic attacks... One specialist was considering MS as a diagnosis. This went on for two years until the substitute who'd taken over my class at work suggested I see a Lyme specialist, who sent my bloodwork out to a specialized lab that runs a test called the "Western Blot" (a more accurate test for Lyme). She'd had the same symptoms I had, and had been diagnosed and treated for Lyme. Turns out I had it as well; the first test was a false negative, and so for two years the corkscrew-shaped bacteria, which is able to cross the blood-brain barrier with far more ease than other menacing organisms, had been reproducing and taking over my entire body.

FACT: Lyme can CHANGE ITS OWN DNA. National Geographic published a study several months ago that highlighted this feature of the bacteria, citing this unique ability as one of the many difficulties in treating the disease. Lyme can learn the antibiotics you're fighting it with and then manipulate its actual DNA to more effectively combat and resist the medication.

I was on antibiotic treatment for a little over a year before I felt normal. I went from being unable to work, drive, get out of bed or make myself food, solve a simple math problem, or remember the names of my family members to being completely functional again. Dr. Daniel Jaller in Rockville, MD, was a PCP who'd seen so many patients with Lyme that he decided to devote his entire practice to Lyme disease. His blog, where he details his research, can be found here: http://lymemd.blogspot.com/
I've met people who've been blinded, paralyzed, even misdiagnosed with auto-immune illnesses and LOU GEHRIG'S DISEASE who have undergone treatment for Lyme and improved 100 percent. They are now healthy and living normal lives. Dr. Jaller provides care to hundreds of us (maybe even thousands) who are suffering from this disease and, like many other Lyme specialists, is under investigation by the state medical board because "chronic" Lyme is not recognized as a condition. He has recently been charged by the medical board for treating chronic Lyme. Here's what happens:

Patients like me, infected with the bacteria for years without knowing, need much longer than the eight weeks someone with acute Lyme disease requires. Often, if you see the tick or the bite and get two months of Doxy, you'll be ok (although many patients experience random symptoms later in life without knowing why). For people like me, it takes months, and sometimes years. Insurance companies look at a patient's bill for all those antibiotics over the course of several months and say hey, wait a second - this is only an eight-week treatment thing, we don't wanna pay any more than that for this person's medications. And so they complain to the medical board (and by complain, I probably mean bribe), and then people like me suffer because Lyme specialists lose their licenses - even though there is now MEDICAL EVIDENCE that proves that Lyme can be a chronic issue that takes a long time to treat. So because the government/CDC, etc. say I'm not sick, then I'm not sick, my doctor is crazy, and now I won't have treatment options.

I was off of the meds for about six months, but then a co-infection called bartonella surfaced, and so I underwent more treatment this past January. I had to discontinue the antibiotics for now due to some GI issues (yes, there are absolutely risks associated with long-term antibiotic treatment, but as I've learned, the risk is most definitely worth the reward - I'd rather have GI issues than be paralyzed or cognitively dysfunctional) but I am fighting for Dr. Jaller's practice and for all of the people out there who are suffering and continually turned away from doctor after doctor because no one knows what's wrong. This Lyme documentary will not only inform you about Lyme (even congenital Lyme - it's so sad to see these babies born with Lyme passed through the placenta because the mother was asymptomatic or had a false negative test - their health deteriorates to the point of no return and they're nonverbal and unable to walk, etc.), but it will inform you about the politics behind why my condition is so hush-hush and how the medical board is full of dirty, dishonest individuals who have no interest whatsoever in your medical care. I am working on putting my story together for a local news station and have been harassing the Attorney General's office with my concern over these charges brought against my doctor, but I honestly feel like the only thing that will ever make any difference is for people to KNOW. BE INFORMED. Have an understanding of the disease that's now been called the "next epidemic" by three separate publications, including Jared Diamond's Guns, Germs and Steel. Know about your medical board and how they can affect the care you receive at the request of an insurance company. Just watch. And share. Please.