Lyme Time with Paula Jackson Jones

United we stand, divided we fall between the cracks

Posted:  Wednesday, October 10, 2018 - 12:00pm
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I had a completely different topic all written up and ready to go for this week’s column until I got two phone calls early Saturday morning. The first was from a local woman who called to thank me for helping her get connected to her Lyme provider and who has begun her journey back to health and wellness. The next call was from a man, who had been slow to admit he was sick until he had no choice but to do so. He was reluctant to accept his limitations and wasn’t buying into the “tick-borne illness hype” until dozens of visits later, answers still were no where to be found. In talking with a neighbor, he reached out to me late spring and I connected him to a Lyme provider for further assessment. His call this past Saturday was to inform me of how great he was feeling, so much so that he was looking forward to partaking in all the weekend Pumpkinfest activities.

Regaining health and taking back your life, participating in activities that you had been medically forced to sit back from, is an exciting goal that so many chronically ill patients seek. Even within the Lyme community, patients ask other patients “what is it that you did that got you better?” knowing that even walking in one’s footsteps is no guarantee to better health. With a variation of symptoms and underlying health issues, not to mention genetics, there is no “one size fits all” approach to many of life’s health issues. So why the medical hostility towards the doctors who do take a different approach to treating patients afflicted with tick-borne illness?

How is it that medical providers find rare diseases? With no guidelines or protocols to follow and without any previous research or labs results to compare to, how is it that medical providers find and diagnosis patients with new and/or rare diseases? Why are those patients given the benefit of the doubt without a medical society harassing and dismissing them and their symptoms? What if those patients are the new and/or rare finds of diseases that have mutated? What if those patients, who are truly sick, are given the benefit of a medical provider’s thinking outside the box? A difference approach to treatment just might reveal a new and profound pathway that so many patients need. But someone has to be the first and they have to be believed and they have to be given all the available resources to venture into the gray area and discover the real diagnosis and the proper treatment.

United we stand. As a society, there are things that we just accept. Like the flu. Not everyone is going to respond with the same symptoms, with the same severity or with the same duration. But medical providers are not going to mock a person with the flu or with flu-like symptoms just because they present differently. And treatment has many different looks. I know this because I, too, have just gotten over a 2-week long head and chest cold and was given much advice from fellow sufferers as to what aided them into recovery. No one asked me for proof positive blood work, no one questioned what I said.

Divided we fall between the cracks. The same consideration is not given to the patients of tick-borne illness. I have emphatically written about who you see for a medical provider for diagnosis and treatment will greatly impact your recovery. I get phone calls and emails from people daily, seeking validation and direction. Some of these of people I will never meet face to face but that doesn’t stop me from connecting them to resources, that aides them on journey for diagnosis and treatment. I never doubt them because by the time they find me, they are crawling out from between the cracks of a broken medical system. A broken system that maintains outdated guidelines and protocols, that force sick patients to remain and grow even more sick.

This past August, the Division of Laboratories of the Department of Health of the State of New York approved Igenex’s newly developed Lyme ImmunoBlots (IgM and IgG), making it immediately available to New York practitioners. To summarize, this new test will be able to detect several strains of US and European species of Borrelia burgdorferi. Current testing for all the Borrelia burgdorferi species by Western blots, eight individual IgM and eight individual IgG tests are required. Performing 16 Western blots on each patient sample is expensive and impractical as opposed to just two tests with the Lyme ImmunoBlots. I have shared this information with the State of Maine Department of Public Health. If/when I get a response, I will share with you here in my column.

In the meantime, my question is this: If New York can get on board with this, why can’t Maine? If there is a test that casts a wide net to determine what strain of Borrelia a patient has been exposed to, but we continue to use an outdated test that only looks for one strain ~ aren’t we doing a huge disservice to our patients? Maine prides its self on the level of healthcare services provided to patients and yet, where tick-borne illness is concerned, remains not only divided but hostile.

It’s time, for the sake of Maine’s Lyme Community, that we unite over this matter and treat all patients in the manner in which they so rightly deserve to be treated ~ with respect, with education and with the best possible resources.

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 paula@mldse.org and visit her website www.mldse.org