Battling Lyme Disease – The Warrior’s Journey

A Testimony For Positive Physician – Patient Relationship

Author – Triza Schultz

Just recently, I sat in one of the tranquil rooms at the Longevity Healthcare Center in San Luis Obispo, California, talking with owners Peter J. Muran, MD, and Sandy Muran, PhD, about their mission in partnering with patients on the fairly new concept in the western medical community of addressing the “whole” person in the doctor’s office throughout the healing process – the body, the mind, and the spirit. 

I’ve been winning the battle over Lyme disease for over 10 years.  I was accurately diagnosed in 2005 at the age of 52, by Internist and Lyme Specialist Daniel K. Kinderlehrer, while living in New Mexico.  My case took the slower, hidden route of thyroid and adrenal breakdown which caused several previous doctors to diagnose mild Benign Essential Tremor, Fibromyalgia, and Chronic Fatigue.  Then as the disease progressed untreated, the symptoms morphed into significant neuro-muscular malfunctions and heart fluctuations, which mimicked MS and Parkinson’s diseases, resulting in the inability to walk, being bedridden. 

Lyme and its comrades of co-infections are brilliant at mimicking other conditions and diseases.  Left untreated Lyme kills.

Diagnosing Lyme disease and co-infections has been left off the radar screen of mainstream western medicine.  Consequently, an exercise of “name that symptom” perpetuates, leaving the Lyme sufferer almost crazy along with doctors who become exasperated after they’ve exhausted referring you to other specialists.  Many patients are directed to the psychiatric sector when the problems can’t be isolated.  By the time several years roll by the typical Lyme sufferer has left a trail of doctors and diagnosis behind, and are dying for lack of proper treatment.   Lyme suffers therefore, have a right to go blinky! 

Lyme Specialists, referred to as LLMD’s or Lyme Literate MD’s are the people who’ve saved my life.  These doctors truly live the modern version of the Hippocratic Oath and operate way beyond the cycle of pressing the latest drug prescription band-aid over a symptom, as is common today.

LLMD’s have become detectives who look for the root cause, hunting down the seed of each problem from the entire whole health mind, body, spirit perspective.  These physicians are our courageous medical heroes and heroines quietly working in the community trenches.  Lyme disease is planted firmly on their radar screens.  That’s what sets them apart from mainstream medicine, and they’re saving lives.

Chronic Lyme suffers will have to partner with a Lyme Specialist for a long time – years in many cases, so a strong relationship must be developed.  This is a challenging relationship type right from the start because of treatment complexities and duration.   We’re hoping our doctor will help save our life, relying on their expertise, success in treating Lyme, and keeping updated with the latest treatments.  At the same time, they must rely on us to follow through and not give up, to communicate, and do our part in the healing process for being responsible of our own mind, body, spirit maintenance.  There is no singular treatment for patients and there is no exact roadmap.

Partnership is critical to the healing process.  It’s not talked about, and I’m fortunate to have had a good partnership with my Lyme doctors.  Like any worthwhile relationship, it takes work.  It takes communication and it takes courage, honesty, kindness, and maturity – all those things we need in any relationship.  Conflict is not to be avoided, it is to be addressed and resolved.  Conflict happens in every relationship.  Those patient-doctor partnerships who don’t resolve problems and confusions are destined to failure – like any relationship.

I’d decided on Dr’s Pete and Sandy Muran after a few interviews over the phone looking for a new Lyme Specialist.  It didn’t take long.  You ask the prospective doctor the first preliminary question:  “Do you specialize in the treatment of Lyme disease?”  When the response is “Lyme disease doesn’t exist here” or “What do you mean?” you stop the interview, say thank you, and hang up. 

My adventure with the Longevity Healthcare Center began on May 27, 2008, a week after friends helped me settle into my apartment on the California central coast. I’d survived through parts of the crisis phase of Lyme and had moved directly from the Emery County Care And Rehab Center nursing facility in Ferron, Utah – home of near death experiences and resurrection for over two years.  Dr. Kinderlehrer had been my healing partner and my rock, but it was time to transfer to another Lyme Specialist.

My first consultation with Dr. Muran was set for 10am.  My first caregiver and I arrived 30 minutes late.  I was so embarrassed. I apologized profusely as we entered the Center.  Dr. Pete gave his full time and attention and re-scheduled his next appointment to give me the space we both needed, which started another round of apologies from me.  He just smiled, and with an amazed sparkle in his eyes, again asked, “You say you moved to California by yourself from a nursing facility?!”

“Well, yes, I said.  I had help from friends, and now caregiver support (questionable) so I can live on my own.” 

Our initial appointment lasted two hours.  Sandy, his wife and Clinical Nutritionist, stepped in for a moment to meet me and brought a treat of orange essential oil that pervaded the air. That warm, calming, citrus scent took the edge off the calamity of the morning.

During my consultation, the caregiver had been busy questioning the medical assistant about the length of my appointment and complained that she hadn’t anything to eat, being hypoglycemic – as if someone else was responsible for her personal care and ability to be on time.  I quickly released her from my employment after I’d found a replacement.  She was an example of how people are either a positive support or create a ripple of damage in our life.  

I clearly knew after the chaos of that first appointment, through the patience, comfort, kindness and expertise I received, I was in the right place to continue my healing journey.  It’s been more than two great years now.

Here are 10 tips I want to share with Lyme patients that have proved successful in helping me heal and maintain a healthy patient-physician relationship:

10 Tips For Positive Lyme Patient/Physician Relationship

  • Choose not to play a victim role – no matter the circumstances, everyone can choose how they think, and find things to be grateful for – find the strength within to do battle, to be gentle to yourself, and be the captain of your ship – the body, mind and spirit.

  • Patients must take charge to educate themselves about Lyme disease, co-infections, and treatments, in order to communicate and partner appropriately with their Lyme Specialist.  Read and research!

  • Create a positive life support structure:  Resolve or eliminate the people, places and things from your life that cannot support you.  Underlying problems always reveal themselves in crisis situations. There are people who cannot go the journey with you.  It’s sad, it’s true.  It’s a part of life.  You may want to enlist a holistic counselor.  Please discuss with your doctor for additional help/referral.  Healing doesn’t happen under constant stress and conflict.

  • Notify the doctor if you’re “detoxing” too heavily from the die-off of bacteria during treatments so adjustments can be made.  No one wants you to suffer needlessly.  Some people are super sensitive and need to go slower than others which is very okay.

  • Be 15 minutes early to appointments to fill out condition changes update chart.  Your entire body is involved here, so have the chart completed to get the most quality consultation time.

  • Write questions/concerns on paper prior to appt. – Don’t be afraid to ask questions as they arise during the appointment.

  • List all your prescriptions and supplements on a word document and update as needed, writing, “Updated (date)” as changes occur for easy tracking and follow up appointments.

  • Get organized!  Buy a big medicine container that has one week’s storage for morning, noon, evening, and bedtime use to eliminate potential of forgetting medicines/supplements.

  • Important to politely challenge a situation or introduce a problem that you need help with.  Don’t be afraid to ask your doctor to repeat something or slow down when they’re talking to you (foggy brain can interfere – don’t be embarrassed, you’re with an LLMD!)

  • Advise your doctor when you’ve discovered something that works well for you, and talk to him/her about your ideas.  You are a partner, not a child.

  • Pete and Sandy are my partners and my rock now.  There’s a definite breeze of forward momentum that I’m joyfully riding as my immune system grows stronger every month, and the setbacks have dwindled down to a few days instead of weeks or months.  I’m healing. I’m winning!

    Lyme disease lives in every state in the US and worldwide – wherever ticks live. 

    If you’ve been diagnosed with Fibromyalgia, Chronic Fatigue, Lupus, MS, Parkinson’s, Alzheimer’s, Rheumatoid Arthritis, ALS, hypo-adrenal and hypo-thyroid conditions and have become very sensitive to foods, sunlight, chemicals, and environmental conditions, you’re not getting better with treatment and your symptoms keep fluctuating and worsening, it might save your life to consult a Lyme Specialist to determine if you suffer from Lyme.

    Lyme Resources:  (Peter J. Muran, MD, & Sandy Muran, PhD – central coast of CA) (California Lyme Disease Assn. - Resource for all tick-born disease issues)  (DVD documentary - stories about Lyme disease) (Provides physicians, patients and researchers with the latest information) (Lyme Disease alternative treatment books and DVD’s) (Lyme Disease Foundation – Education, journals, conferences, research)  (On-line newspaper – Lyme and other chronic illnesses)
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