Lyme Time with Paula Jackson Jones

Know Your Adversary

Tue, 09/17/2019 - 3:00pm

When people hear that I am in remission, I get asked “What was it that got you better? What test should my doctor order for me? Did you do oral or iv meds or both?” and to all these questions, I have the same response “Know what you’re dealing with.” You can’t possibly know how to fight something if you have no idea what you’re up against.

Here are some things to ponder if you have been bitten by a tick and remain symptomatic:

Adversary #1: Know what you’re dealing with

Proper testing will reveal your adversary and proper treatment will help you overcome and regain your health. Mis and delayed diagnosis can lead to a greater health battle as bacteria spreads and finances are drained.

Know that the current testing for Lyme disease (ELISA and Western Blot) that most primary care providers use is extremely unreliable. At best, 60% and often with false negatives.

Know that a tick bite can expose you to many different tick-borne diseases.

Know that each tick-borne disease has its own test and own treatment protocol. There are panels that can be run that are more effective and reliable with a broader reach to capture even the tiniest speck of bacteria.

Know that less than 40% of all positive cases of Borrelia burgdorferi aka Lyme Disease produce the classic bulls-eye rash.

Know that if you test too early or too late, a negative test does not mean that you are negative for tick-borne disease. If you remain symptomatic, it is pertinent that you retest in a couple weeks.

Know that there are other tick-borne diseases transmitted by the deer tick do not produce a bulls-eye rash. In Maine, we have multiple strains of Borrelia as well as Anaplasmosis and Babesia (a malaria-based tick-borne disease) on the rise.

Know that all patients can and will present with a variety of symptoms and with a varying degree of severity.

Know that co-infections (the presence of two or more tick-borne diseases) can and will greatly affect how a patient presents with symptoms.

Know that taking antibiotics and steroids can and will affect the outcome of testing.

Adversary #2: Know who you’re dealing with

Know that not all medical providers are knowledgeable in the field of tick-borne and that can and will affect your being diagnosed and treated properly.

Know that not all medical providers treat the same way. You have choices and I would urge you to exercise them. Tick-borne disease can be treated with western and eastern medicines, holistic protocols, herbal regimens and many unconventional methods. Remember, not all patients present or respond the same. Treatment should not be cookie cutter but designed uniquely to each patient.

Know that the governing body that originally issued treatment guidelines (Infectious Disease Society of American) wrote: It is important to realize that guidelines cannot always account for individual variation among patients. They further wrote that “adherence to these guidelines to be voluntary with the ultimate determination regarding their application to be made by the physician in light of each patient’s individual circumstances. Again, not a cookie cutter approach!

Know that you have rights. You have the right to ask questions and advocate for yourself. There are laws in Maine that protect you (for more information on these laws, see our website). If you’re getting pushback from a medical provider, seek another provider. If your provider is being unprofessional and argumentative, report them. This is not the DO NOT HARM behavior that patients have come to expect and we will not tolerate it.

Adversary #3: Know why you are still sick

Some patients report symptoms that can be caused from damage from treatment such as adrenal fatigue. Some providers only treat with antibiotics, there is not repair phase. This is vital to your achieving your health. After the infection is gone, repair must take place but if you are with a provider who doesn’t practice this, you are missing a vital part of your recovery. I refer to this part as “putting out the house fire but not rebuilding the house”. You can not live in a burned out and expect it to function as it did prior to the fire. Repairs are required and you need someone knowledgeable in repair work. The firefighters did their part now its time to call a contractor. Its ok to seek out a different medical provider for your repair phase. Some symptoms can and will go away when repair work is done. This is work that supports your immune function until it can fully function on its own.

Adversary #4: Know how to get through it

As a patient navigates through the murkiness of proper diagnosis and treatment, support from family, friends and co-workers can be strained. This is never a quick and simple journey and those around us not directly touched by it, can not fully understand what we are going through. Again, as patients present differently, the outward display of our disease can be confusing and misconstrued. One good day can lead to several bad days. A lucid morning can lead to an exhausting afternoon. Those who do not understand tick-disease have commented that “we’re faking our illness” when the reality is “we’re faking our wellness”. We put on a good face and smile through the pain and confusion as we slowly fade into the background of life. We stop participating because cognitively its too hard to keep up with conversations. Its mentally and physically draining and the emotional toll it takes on a patient and their family is inconceivable by those with one or more degrees of separation. This is when the patients choose to stop fighting because they have convinced themselves that they are a burden to their loved ones and they just want it all to stop ~ the physical pain, the emotional burden and financial strain.

This is probably where I spend much of my time, helping people figure out their adversary and getting them on the right track for recovery. Supporting them with every step of their journey until they can sustain themselves. One day, this fight will come to an end and we will all be on the same page, with the same tools in our toolboxes, reading the same instructions, hearing the same messages. But knowing that each patient must be treated individually requires more knowledge and education for the medical provider. It requires the patients knowing their rights and not being afraid to advocate for themselves. It means holding those accountable who continue to throw out roadblocks by misdiagnosing and mistreating their patients.

Know your adversary, have a battle plan, fight for your health and we will continue to pave the way, fighting and demanding change!

Paula is the president of the MLDSE, former 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 or visit www.mldse.org