Lyme Time with Paula Jackson Jones

What is it going to take?

Posted:  Tuesday, January 30, 2018 - 8:45am
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Disbelief, in this day and age, where the media is reporting on it weekly and almost everyone that you meet has been touched by Lyme or tick-borne disease, and yet you walk into a medical provider’s office, scared and confused that you might have been exposed and this is what you are told: “We know that some people have a belief that there is Lyme disease, but our practice doesn't recognize it because it doesn't appear in our books and we aren't trained on it.”

This just happened last week. January 2018. Providers are still making these kinds of statements to patients which will obviously result in the type of and level of adequate care that they’re going to receive. There is a cartoon where a doctor enters the room and says to the patient laying in the bed, “The bad news is you have Lyme disease. The good news, I don’t believe in that disease so you’re fine!” and the look of confusion on the patient’s face is quite telling. This is the reality so many with Lyme and tick-borne disease are facing even today. Last fall, I had a young woman reach out to me who had been sick for quite a while, who had just come from her primary doctor, and when she questioned if they thought she might have chronic Lyme, she was told that they don’t believe in chronic Lyme and oh, by the way, she’s too sick to have “chronic Lyme.” Really? The definition of chronic anything is persisting for a long time or constantly recurring and difficult to eradicate. Just because your primary care doctor doesn’t believe in something, doesn’t mean it doesn’t exist. It just means that the level of care you get from them will be restricted and this is something that you need to think about.

Even when scientific research presents irrefutable evidence of persister cells, cells that evade blood tests and are untouchable by antibiotics, there are medical providers somewhere denying it. Even when the federal Centers for Disease Control (CDC) state that their tests are not reliable and that a medical provider needs to start with a clinical diagnosis, there are providers somewhere ignoring this. Even when another set of guidelines are introduced into the federal National Guidelines Clearinghouse database, guidelines that passed the rigorous GRADE system and were accepted by the Agency for Healthcare Research And Quality (AHRQ), a whose mission is to produce evidence to make health care safer, higher quality, more accessible, equitable, and affordable, and to work within the U.S. Department of Health and Human Services and with other partners to make sure that the evidence is understood and used ~ there are still going to be medical providers who adamantly refuse to acknowledge this and who mock, even ridicule it. Why? If it means another plausible option for the patient, why would a doctor ignore this?

So, what is it going to take for the mindset to change where Lyme and tick-borne disease is concerned?

The Department of Health and Human Services has a federal Tick-borne Disease Working Group working on identified areas of concern. The state of Maine is reporting a rise in tick-borne disease. So, if action is being taken at a federal and state levels, how we do explain these local level conversations that are taken place in medical provider’s offices, between doctor and patient? Now for those providers who like to tell me that they adhere to and only follow the Infectious Disease Society of America (IDSA) guidelines, I say, “Ok, but that singular footnote at the bottom allows you to think outside the box where your patient is concerned on an individual basis. And with updated science and information about diagnosis and treatment, why are you choosing outdated guidelines and antiquated protocols that don’t even touch your patient’s chronic condition, complicated by co-infections?” Why, today, do medical providers think that is an ok approach to treating their patients, and furthermore as patients, why do we find that acceptable? If a medical provider tells you upfront that they don’t believe in a certain condition and they are not trained in how to diagnose or treat it, how long would you sit there? My phone rings daily with calls from people who just left their doctors office and felt mistreated, put down, ignored, unheard and dismissed and to them I say “This is not about you, its about your provider and their limited knowledge about this disease. Here, let me refer you to someone who can help.” We have people walking around, misdiagnosed 10, 15, 20 years ago when doctors just didn’t know what they were dealing with, who are now getting connected to resources and getting the help that they need.

Now that we know better, we are talking more about it and demanding better. Education and training is freely available to any medical provider who wants to know more about diagnosing Lyme and tick-borne disease in both acute and chronic stages as well as treating when complicated by a co-infection.

So, what’s it going to take? Why not in the privacy of your own home or office, check out the online webinars, find out about job shadowing with a Lyme provider or better yet, mark your calendars and come to our fourth annual Midcoast Lyme Disease Support & Education conference on Saturday, April 28 at the Augusta Civic Center (we’ve outgrown the Wiscasset Community Center) with our attendance and exhibitors. This year, we will have over 30 speakers, almost 100 exhibitors and afternoon breakout sessions ~ as always free to attend.

For more information about educational events, physician training and our conference, visit our website www.mldse.org and as always if you need help, you can reach me at paula@mldse.org