Lyme Time with Paula Jackson Jones

Shows what they don’t know

Wed, 09/12/2018 - 3:00pm

With media awareness on the rise, with the admission of faulty tests and the FDA fast tracking a Lyme vaccine, it makes you wonder, “Why are medical providers still so defensive when it comes to Lyme and tick-borne disease?”

Believe it or not, there are still doctors, here in Maine, who claim that Lyme is nothing more than mass hysteria — even with statistical data showing confirmation of the rise in new cases. How can this be? How can a medical professional still deny that Lyme is a serious health risk here in Maine? Well, patients have been told that because their providers haven’t been trained on it, it doesn’t exist for them. What?

How can they argue with patients who present with information in hand about research, testing and treatment? And they do argue with the patients.

They argue when a patient asks for their bloodwork to be sent to Igenex, the leading tick-borne disease laboratory for over 25 years (located in California). Patients have the right to have their bloodwork sent anywhere and yet they are being denied this option because providers use whoever their facility is networked with. Interesting…

Medical providers tell patients that Igenex scams patients and pays doctors for their usage. This is not true but I am beginning to wonder, by denying a patient the right to use whatever lab they want and by only using the lab that their medical office is contracted with, who’s scamming who here?

They say that Igenex is not FDA-approved. That is true, however, labs are not required to be FDA approved but CLIA approved. This smoke screen is practiced by doctors who a) do not understand how labs work and are federally regulated and b) do not support the new evidence-based scientific research. And why? Why is this still so controversial in 2018?

Because it shows what they don’t know.

Laboratories are not required to be FDA approved. They are, however, required to be CLIA approved. The Clinical Laboratory Improvement Amendments (CLIA) regulate laboratory testing and require clinical laboratories to be certificated by their state as well as the Center for Medicare and Medicaid Services (CMS) before they can accept human samples for diagnostic testing. In general terms, the CLIA regulations establish quality standards for laboratory testing performed on specimens from humans, such as blood, body fluid and tissue, for the purpose of diagnosis, prevention, or treatment of disease, or assessment of health. Igenex is one of over 260,000 US labs that are CLIA-approved.

Now don’t go getting all hung up on FDA approval. Did you know that vitamins and supplements are not FDA approved? They are regulated by the U.S. Dietary Supplement Health and Education Act of 1994. Now you know and does that change how you feel about taking that One A Day vitamin or Melatonin before bed? I didn’t think so.

Medical providers who do not fully understand tick-borne disease will use this argument every time and it back fires, every time. It only shows their patient what they don’t know. These are the patients that I talk to every day. Patients who question the results of their testing, their diagnosis and even their treatment because they are mindful of what is taking place outside their primary care doctors office. They talk to people. They read things.

I had a patient who reached out to me after their neighbor went to the Emergency Room and had a very different medical experience. This ER patient had the good fortune to get a medical provider that day who not only understood the complexity of tick-borne disease but who had a vast amount of experience treating patients who had been afflicted by various tick-borne diseases. The person who reached out to me said, “It’s true what you wrote, Who You See Matters, because my primary care doctor sent me out the door, still sick and feeling horrible with a watch-and-see attitude only for me to diagnosed (by a Lyme provider) a week later with Lyme and Babesia. My neighbor got diagnosed correctly the first time and is in a far better recovery position than I am.”

Folks, I am not about bashing medical providers. I realized that there is still a learning curve to be had. This information is out there. Denying it only does a disservice to patients. Conferences are coming up where medical providers can get CME credits and be trained by the top researchers on the latest science, diagnostic tools and treatment studies. I am all about getting the patients connected to resources to be properly diagnosed and treated as early as possible. I lost six years of my life because I listened to main-stream medical providers who hadn’t given me a reason not to trust them. Now I know better. Now I know that patients have options and I empower them with resources.

Lyme providers and labs such as Igenex are not quacks and they are certainly not scamming patients. But medical providers who continue to spread “fake news” about how other medical providers and labs work, well folks, that is the real scam and it goes to show what they don’t know.

Paula is the president of the MLDSE, the co-chair of the Access to Care Services and Patient Support subcommittee of the Federal HHS Tick-borne Disease Working Group, the Maine-partner of the national Lyme Disease Association, member of Maine’s CDC Vector-borne Workgroup and active in Maine’s Lyme legislation. You can reach her at and visit her website