Dear Doctor Oz (Lyme Awareness Month Version)

Dear Doctor Oz,

I can't count the number of times I've sat down to write to you over the years.  And I'll be honest, typically when I'm inspired to write, it's not because I'm overly happy with a topic on your show.  In fact, until the past several months, I used every opportunity I was given to tell people how I didn't like you and how I thought you were money-hungry because you're one of the best heart surgeons in the world but all but gave up a lifesaving surgical practice to host a TV show--and a show that, in the first years of the show, was almost exclusively centered on the newest weight loss and fad diet craze.  And being someone in recovery from an eating disorder, I understandably harbored extensive dislike for you.  But over the past several months, I've started watching your show because amidst all the weight loss segments (which are pretty much expected this time of year and which boost your ratings, although I still don't condone them), you do share some really great information about alternative medicine, homeopathy, natural remedies and the like, and I absolutely love that you share this stuff on TV because it shows you care about the health of your viewers and not about pushing prescription medication.  I never thought I'd say this, but I actually have your show set to record Monday-Friday on my DVR, just so I can see what good natural/alternative/homeopathic remedies you discussed.

So at this point in my life, as someone who has finally been diagnosed with chronic Lyme Disease and co-infections after being misdiagnosed with a plethora of illnesses over the past 20 years (I'm 25, so that means there's a good chance I've had Lyme & Co most of my life), I was so excited to hear that you were doing a segment on Lyme Disease during Lyme Disease Awareness Month.  I was looking forward to finally having a segment on national TV, broadcast to millions of viewers, that shared the truth about Lyme, and I was sure you'd deliver because you haven't been one to shy away from controversial topics lately.  After watching the segment, I have very mixed feelings.

The positives first:

1.) Thank you for acknowledging that Lyme goes misdiagnosed as so many other illnesses and that there are people who have Lyme who have no idea that they're infected with Lyme because they've been diagnosed with any number of the diseases Lyme likes to mimic.  This was a big step, because it's not often that this gets pointed out in a Lyme segment on TV.

2.) I'm so happy that you talked about how, if misdiagnosed and untreated, Lyme not only causes the initial flu-like symptoms but goes into a full-blown neurological attack on those affected.  So many segments have been done on Lyme where this was either not a topic of conversation or was outrightly denied, so I'm extremely greateful you made this known to your viewers.  Thank you for that.

3.) Another big victory for Lyme patients via your segment is that you mentioned that while Lyme is most common in the northeast, it has been found in most/all states.  This is another huge step for mainstream TV, because this is one of the fallacies that the CDC and IDSA stand behind as truth.  I'm beyond appreciativethat you exposed this truth, so another thank you is in order.

4.) You were absolutely on point in explaining to users the best way to remove a tick, and extra credit for the model and for correcting the placement of the tweezers.  Also, I'm glad you not only told people to grab the tick's head, not body, with the tweezers, but you explained why--because grabbing its body can release the toxins even more.  Kudos on that.

HOWEVER, while this was, overall, one of the most informative segments on Lyme that has aired on a major national TV platform, there were also several inaccuracies and pieces of misinformation throughout the segment.  In an effort to provide all the right information, I've outlined the inaccuracies below, and after each one I've explained the actual facts.

Inaccuracy 1: Speaking about how patients go misdiagnosed and are untreated for years, you made the statement: "And even though a simple blood test can detect it, a lot of doctors miss the diagnosis."

Truth:  While I'm glad you acknowledged that too often it goes misdiagnosed and untreated for years, there is NO BLOOD TEST that can detect Lyme with reasonable accuracy.  The basic blood test most hospitals, doctors, etc., can/do run gives false negatives (and some say false positives, but I don't think there's such a thing as a false positive with Lyme--if it says positive, that indicates Lyme) 60% of the time.  And even the "more accurate" tests can't be relied upon to give a diagnosis because if you've had Lyme misdiagnosed for years, your immune system is so worn down it won't produce the antibodies that are tested for with that test.  LYME IS A CLINICAL DIAGNOSIS.  I can't stress that enough.

Inaccuracy 2: When showing a small container where he had several ticks, you made the statement, "These are actually the larger ones, the really small ones are the ones that can transmit Lyme Disease."

Truth:  I can't even begin to explain how much this frustrates me.  First of all, a tick is a tick is a tick.  NO TICK BITE IS EVER SAFE, and there's no type of tick, size of tick, color of tick, that you should ever assume is incapable of transmitting a tick-borne disease to you.  Yes, it's true that not every tick carries Lyme (the Borrelia burgdorferi bacteria), but there are so many other tick-borne diseases out there that are transmitted by all known varieties of ticks--Rocky Mountain Spotted Fever, Heartland Virus, Babesiosis, Bartonella, just to name a few, and yes, Lyme.  And you can bet if you've been infected with one, you've been infected with at least one other, but usually a couple/few others.  Because it's very rare for an infected tick to only carry and transmit one bacteria/virus.

Inaccuracy 3: You made the statement, "The tick latches onto you and within 36 hours the bacteria is growing in your body."

Truth: Sure, if you live your life by the CDC handbook (which is in dire need of revision/rewriting when it comes to Lyme and Chronic Lyme), you'll assume it has to be attached for 36 hours to transmit a disease.  But that's not the case.  No amount of time should be deemed "safe" when it comes to being bitten by a tick.  Heck, if you saw the tick was attached and removed it within 5 minutes of being attached, there's always a possibility that during the removal process you squeezed some of the toxins/diseases inside the tick into your body (even if you try to be careful not to), so they invade regardless of whether or not the tick is attached.

Inaccuracy 4: When talking about Lyme going untreated and misdiagnosed for years and causing neurological issues, you mentioned that even if you've gotten to that point, once you get the diagnosis, the treatment is effective, "It's simple antibiotics."

Truth:  Again, yes, the CDC and the IDSA (Infectious Disease Society of America) will tell you that a 30-day course of antibiotics will successfully treat Lyme Disease.  And yes, they claim that's true because if they admitted the reality of Chronic Lyme and the treatment required to cure Lyme/put Lyme into remission, they would lose millions or billions of dollars and have several lawsuits on their hands from patients through the years that have been denied care (or families of patients who were denied care and died as a result of not being able to receive treatment).  THERE IS NOTHING "SIMPLE" ABOUT TREATING LYME.  Especially if it's in the chronic stage.  Sure, if you are bitten by a tick and go to your doctor and get a course of doxycycline within a few days/a week, that could very well protect you from having Lyme become a systemic, chronic condition.  Outside of that, the word "simple" should never be used to describe Lyme treatment.  Treatment for chronic Lyme averages anywhere from 1-3 years (that's once the official treatment is started, that doesn't account for the years it often takes to get diagnosed or the many failed attempts at managing symptoms, we're talking about Lyme-specific treatment), often involving either multiple antibiotics that are given intravenously the entire time, or homeopathic/alternative/natural treatments that are just as time-intensive (all patients respond to different treatment modalities in their own ways, so there's not one particular "best treatment" for everyone).  But whatever the course, you can darn well believe it's not a "simple" 30-day course of oral doxycycline.

Doctor Oz, I do want to take this time to once again thank you for doing this segment during Lyme Disease awareness month.  Even with the inaccuracies I mentioned and corrected above, there were several positive things about which you educated millions of viewers, and like I said, in my opinoin this was the best national TV segment on Lyme that I've seen to date.  No, it wasn't perfect, and yes, I'm still upset by the misinformation (as are other Lyme patients, I'm sure), BUT THIS IS SHOWING THAT PROGRESS IS BEING MADE and I have faith that one day we'll watch segments that expose the full truth.  No matter how long it takes.

God bless,

Becca