We have had quite a few new people sign up for our blog postings so I thought I would just touch base.
I thought I would let you know that we give away a copy of Lyme Savvy each month to a lucky winner on Facebook in the Lyme Patient Raffle group.
Lyme Advise is also currently doing a give away: https://www.facebook.com/lymeadvise/.
I don’t know if you heard the latest, but Dr. Mozayeni has accepted a position on the ILADS.org board and he will serve as President starting in 2018! Exciting!
In the past few weeks, I have talked with several newly diagnosed individuals. Three of them had never heard the word “co-infections.” Thus, they had never heard of Bartonella, Babesia, Erlichiosis . . . and the list goes on.
It can be frustrating to educate people about Lyme itself. It can be doubly frustrating to bring them up to speed about the co-infections as well as Lyme. The amount of mis-information about these diseases is overwhelming.
I encourage each Lyme patient to find a Lyme Literate Medical Doctor (LLMD) to help you navigate your way to health. And work with your LLMD as a team. One thing that drives me insane: when a patient has an appointment with their LLMD, they develop a new plan for treatment, and then the patient goes on line and asks other patients their opinion of the plan. If you still have questions about your plan, ASK YOUR DOCTOR! Do NOT ask a thousand people who do not have a medical degree, are not familiar with ALL the details of your history and current state. If you feel you can’t work with your LLMD as a team, find a new doctor.
In Lyme Savvy: Treatment Insights for Lyme Patients and Practitioners, we cover many of these co-infections. I encourage you to read it.
A note to the new readers: I originally tested positive for Lupus and Lyme. Better testing from Galaxy Diagnostics showed I was positive for Bartonella. I was then treated for Bartonella. And after that treatment, my next Lupus and Lyme tests were negative. It took a smart physician to figure out what I had and how to treat it.
8 Years Ago Today: The First Appointment
I lied on the 22-page “Complete History Form” Dr. Mozayeni asks all patients to fill out. I suspected if I revealed all of the symptoms I had experienced over the years, he would surely think I needed a psychiatrist rather than an LLMD. No one has that many symptoms without being a hypochondriac; even I had to begun to believe this. I focused on my major symptoms and denied the less compelling ones.I was very nervous at my first appointment with Dr. Mozayeni. Partially, because I couldn’t believe I might actually have Lyme Disease. If I did have Lyme, I didn’t want to have Aunt Betty’s outcome. And I didn’t want to have one more physician looking at my paperwork and giving me another incomplete, inaccurate diagnosis. My anxiety had reached a new peak.
It wasn’t like getting a splinter in my finger. I couldn’t remember getting the splinter. I couldn’t see the splinter. I couldn’t get a pair of tweezers to excise it. I knew I felt pain and it kept getting worse. But there was no red, swollen, site with puss coming out. There was nothing to show a physician except my own perception and recording of symptoms. Even some of my lab work was faulty, skewing the puzzle more so. For years, I watched and listened as physicians provided little explanation and less treatment for pain that was increasing sometimes exponentially. Over those years, my anxiety increased, my defensiveness grew.
I talked with other people, researched the Internet (not necessarily the best idea), desperately seeking answers. When I did receive a diagnosis, I thoroughly researched that condition, becoming as expert as a non-science major can become. But when I met new physicians and explained previous conditions, my knowledge base was met with skepticism and obvious discomfort. I found most physicians did not appreciate being challenged by laypeople. I discovered an ugly dimension in medicine.
When the physicians could not come up with a plausible diagnosis or effective treatment, they did not like being put on the spot. They did not care for being challenged with the possibility they might be wrong in their diagnosis. They furrowed their brows, reinforcing their rejection.
In his book How Doctors Think, Jerome Groopman points out “physicians, like everyone else, display certain psychological characteristics when they act in the face of uncertainty. There is the overconfident mindset: people convince themselves they are right because they usually are.” (p. 150).
Groopman adds, “Specialists in particular are known to demonstrate unwarranted clinical certainty. They have trained for so long they begin too easily to rely on their vast knowledge and overlook the variability in human biology.”
Here I was, thinking, Ok, that diagnosis wasn’t right, so what else could it be? I was ready; no, by that time, I was desperate for another possible diagnosis. But the physician was still stuck on the fact that I had informed him he was wrong. He did not like it one bit. Instead of saying, “Let’s move on to the next round of possibilities,” he suggested counseling. I received this suggestion from more than one physician.
My frustration compounded with each visit. I had to prepare and brace myself for each physician, to explain why I knew so much about various conditions. I had to emphasize the three most exasperating symptoms to have them even acknowledged. I only had about 11 minutes for each visit and I wanted as little of the time spent in a defensive mode as possible. The urgency and stridor in my voice increased.
I eventually wondered if my desperation for an accurate diagnosis was appearing as Munchausen syndrome – a type of mental illness in which a person repeatedly acts as if he or she has a physical disorder when, in truth, they don’t have the symptoms. They act this way because of an inner need to be seen as ill or injured. They are even willing to undergo painful or risky tests and operations in order to get the sympathy and special attention given to people who are truly ill. I definitely did not want to be seen as a candidate for Munchausen.
I didn’t have an open wound or broken bone. I had migrating pain, tenderness. I had overwhelming, incapacitating fatigue. My hands and feet were numb and cold. I would simply fall. I couldn’t walk down the hallway in a straight line. My husband jokingly called me “Ricochet Rabbit.” My knees buckled for no known reason. I cried in the morning from excruciating back pain when I tried to get out of bed.
Here was the truth:
I had an inner need to be seen as ill: first, because I was ill and, second, because no one was validating it in proportion to the amount of pain I was experiencing.
I had been willing to undergo painful tests in order to find an answer. I wanted my pain to stop. I was willing to go to any lengths to get resolution.
I remember seeing numerous specialists, giving them my thick file, showing them my spreadsheet of multiple diagnoses, many of which were auto-immune disorder related. No one put the pieces together. No one was reading the entire spreadsheet; no one until Dr. Mozayeni.
From the moment I arrived at his office I experienced something different from my other doctors’ appointments. I approached the private sign-in sheet sitting on an open counter. There was no sliding window for the receptionist to separate herself. I signed in and sat down in spacious chairs lining the walls against the deep blue painted walls. This room was rich in color, warm, comforting.
Abstract paintings added texture and depth, offering each person their own interpretation to the finished product. There was no right or wrong in this room.
When my appointment time arrived, Dr. Mozayeni came out to the waiting room greeting me warmly with an extended handshake and a genuine smile continuing past the introductions. He escorted me down the hall to his office, one corner filled with diplomas, fellowship certifications and class photos. I wondered which young student was him. Minus the white coats, it could have come from my own college era. We were not far apart in age.
His desk was sparse, more blank forms than ones filled out. In fact, the only file on his desk was mine. No distractions except the telephone and his MacBook laptop.
He opened the conversation by mentioning he had read through my file but he wanted to review my symptoms in a more thorough manner (more thorough than the 22 pages I had answered?).
Dr. Mozayeni went through the symptom checklist and bloodwork results very slowly, meticulously, often re-asking questions about the symptoms. I didn’t have the checklist in front of me, and I couldn’t remember which questions I had answered truthfully and which ones I had ‘minimized.’ About half way through, as he went through each section, developing his theory for diagnosis, Dr. Mozayeni started to explain the Bartonella disease process and how my seemingly unrelated symptoms fit together.
Dr. Mozayeni’s expression remained open throughout the two-hour appointment. This was a very different experience. His face indicated no judgment, surprise, or condoning. He made direct eye contact with me; his tone of voice was interested, calm, searching, genuine. He asked open-ended questions. His word choice indicated compassion, humility and understanding. His voice remained calm and clear. As time passed, my anxiety lessened. I would not have to be defensive or demanding in this appointment. I could simply tell my story and relay my observations and symptoms and let him process it from there.
“I have to assume the patient is telling me the truth,” Dr. Mozayeni later explained to me. “I have no reason to suspect the patient is lying to me. I have to take the data they give me and figure out how it fits into the system.”
Mainly, I was impressed by the amount of time he spent with me, the depth of information he gathered, and the clear intention with which he listened – really listened – to me.
From our very first meeting, I have been fascinated watching him. I have learned from him the way he views patients:
Each patient presents like a slide puzzle, a series of square tiles within a border, with one piece missing so the squares can be moved around but in a particular order; more intricate than a Rubic cube. Based on the patient’s symptom history and test results, Dr. Mozayeni moves the pieces around within the square until he can finally see the larger picture that illuminates once each puzzle piece is in its correct place. But in this slide puzzle, because the body is a series of systems working together, the individual puzzle pieces also change shape as they sit within the larger square. It’s a combination of a jigsaw puzzle, slide puzzle, and Rubic cube.
Dr. Mozayeni is a fix-it guy. He wants to understand how the body works in order the treat the problem.
He doesn’t want to treat only the symptoms;
he wants to treat the cause of the symptoms.
He wants to fix patients, not just make them feel better. He cannot stand the thought of people suffering when the problem is not fixed.
Because I already had some results from IGeneX revealing five positive bands, Dr. Mozayeni was able to start me on some medications immediately. He also changed my thyroid medication dosages and added vitamin supplements.
“I think with these changes, you will soon find yourself feeling about 20 percent better than you have been,” he suggested. He also ordered more blood work.
This first appointment was tremendously emotional for me. It was the first time in more than a decade I believed a physician was fully attentive; listening, collecting and evaluating data, and presenting a diagnosis that actually fit.
During my first visit, Dr. Mozayeni clearly (and thankfully, slowly) explained 22 pages and almost three decades of symptoms in a clear, concise, believable manner outlining the likely root cause of persistent symptoms in Lyme Disease and Bartonella.
He explained simply and clearly what had been happening to my body for almost thirty years; how each system was affected and had complicated the next set of symptoms that appeared.
To finally enter an office where there was no time limit, no judgment, no disbelief, no arrogance; well, it was simply overwhelming.
When I left Dr. Moayeni’s office two and a half hours later, I sat in my car and wept. I wasn’t crying because I found out I had the same disease that had killed my Aunt Betty years before. I cried because I was overcome with the most profound sense of relief I had experienced in recent memory; and the most amazing sense of honest, authentic acceptance. I no longer needed to ‘prepare for battle.’ I could be forthright and be believed. I could question and not be reprimanded. I could doubt and be reassured.
During my now 8 years with Dr. Mozayeni, and with my other physician encounters, I have learned no one will fight for my health more than I will. I have to know my numbers, know my meds, know what to ask, what to say, what to let go and what to demand. It took me decades to find the right physician. It was worth every step.
But it still remains my responsibility to be an active participant in my recovery. If a doctor says, “You don’t need to worry yourself about that,” walk out the door and get a new doctor who will treat you as a bright, equal, assertive patient.
I have always appreciated that Dr. Mozayeni tells me up front how and what he is thinking. There is no sugar coating. He is brave enough to admit he doesn’t have all the answers right now, but he also emphatically states he will keep searching until he finds them. And he does. I don’t want a doctor who placates me with false promises. I need a medical professional who is up front with patients and looks beyond the superficial for answers.
I mourn for a father lost, and i celebrate my husband who gave me a son.
I didn’t want children when Jeff Rainey and I married. I woke up one morning, turned over and said, “Honey, I want to have a baby.” He replied without missing a beat, “It’s a good thing I’m flexible.”
My teacher today reassured me that though I miss Dad greatly, he fulfilled all of his obligations here and did all God needed him to do. His life was complete. I trust in that knowledge. But it still makes me wistful. And it does not take away Mom’s pain which remains fresh and unsettled.
My teacher and I talked about the trip to Turks and Caicos – you remember, the #vacationofalifetime. She said, “Every time you think of that trip, you think of it as magical . . . ”
I nodded my head. We all do. We all believe it was a magical trip.
She shook her head no. “That, my dear, was Love. It was Love felt by every single one of you at one point or another during those seven days. For once, for just a little bit, you felt as though you belonged in that family in all ways. It wasn’t magic, Sharon. It was LOVE.”
A friend of mine is in Turks and Caicos right now with his own family. The first night, he sent me photos of the sunset and texted, “It’s your dad saying hi from T & C.” It made me cry, in a good way.
I suppose what I am trying to say in a convoluted way is that while these holidays are difficult for those of us who cannot be with our loved ones, to remember they truly are with us.
I know when i look at the empty chair, or when we holds hands to say grace, instead of looking for Dad, or Jim (Jeff’s dad), or Aunt Betty, or Troup, or Aunt Cherry, I simply need to close my eyes, take in a breath, and feel them.
I might feel a light brush on the cheek, or the sun shining a bit brighter, or a whisper of the wind. They are with us, always. All we need to do is call for them in our hearts or out loud and they come to us.
Spirit has reminded me often this week that when I need help, if I reach out and ask for help, my guides and my God will be there.
So I ask for solace and peace in missing two of the greatest fathers God created.
I ask for laughter for my husband.
I ask that we gather on Sunday to celebrate family.
And even more so, that we celebrate and live in LOVE.
No more worries about having to carry that heavy paperback book around with you! We have the Kindle version of Lyme Savvy now available! Just go to Amazon and it’s there!
If you already bought the paperback version on Amazon, the Kindle version is just $2.99! How’s THAT for a deal?!
I hope by now you have learned a few things about Lyme disease that you didn’t know thirty days ago. I hope you carry this information forward in case you find yourself infected or you hear from a friend who has a myriad of mysterious symptoms who can’t seem to get an accurate diagnosis.
I am happy to speak with anyone regarding this disease. Please feel free to email me at Sharon@sharonrainey.com.
Please consider purchasing our book, Lyme Savvy: Treatment Insights for Lyme Patients and Practitioners.
From Galaxy Diagnostics
John (age 53) – Multiple Sclerosis
As a small animal veterinarian, John had daily contact with animals for more than 30 years. Starting in late 2004, he suffered numerous progressive neurological symptoms, debilitating enough that after being a runner for years, he faced the possibility of being wheelchair bound. His hands became numb, and he was constantly fighting fatigue. The buildup of symptoms over months prevented him from maintaining his practice and had him seeking medical help.
John consulted with numerous physicians and was ultimately diagnosed with Multiple (MS), for which there is no identified cause or cure. Physicians began to administer interferon treatment. The treatment may have helped, but John was still concerned. He knew, as a veterinarian, he had been exposed to numerous pathogens, and the MS diagnosis did not explain all of his symptoms.
John tested positive for Bartonella henselae. John was placed on a multi-drug oral antibiotic regime that lasted over a year. Progress was not immediate, but over the course of months, John regained significant use of his legs, had dramatically increased energy and saw a reduction of the neurological symptoms.
John’s quality of life improved to the point he was able to increase his work hours.
It has been an uncomfortable month for me. I have spent each day trying to educate everyone around me about Lyme disease, about Bartonella, about chronic infections. I have tried to educate and let people know about the devastation of this set of deadly diseases.
I look through pictures and realize who is gone, who died, who is too weak to participate, who has given up.
My aunt Betty died in 2002 from a pulmonary embolism – she was too weak from the Lyme disease to walk, so she was wheelchair bound. She died instantly.
Two years ago, while attending a Lyme rally in Arlington, I had a pulmonary embolism and didn’t know it. It was another week before I finally saw a vascular surgeon who sent me to the Emergency Room immediately. By then, the DVT (deep vein thrombosis) was from my ankle all the way up to my groin into my femoral vein. My shortness of breath that I had for two weeks was pulmonary emboli that just hadn’t killed me like they did Aunt Betty.
A few months ago, I had the same shortness of breath and bloodwork revealed I had survived another DVT.
Maybe I’m having a bit of survivor’s guilt. I don’t know why so many incredible loving souls have died and I remain here. I hold onto the thought that God says my work here is not complete yet, so He keeps me around to finish my job.
My job isn’t just to educate you about Lyme.
My job here is to love each soul as God loves us. We are all part of one great energy source that IS L O V E.
I didn’t learn this until my father’s death on March 25, 2016. It took 26 days and nights of miraculous, amazing conversations, and immeasurable love with my Dad to get me to realize some of God’s gifts to my soul, to my relationships.
I am grateful to have this opportunity to tell you my experience, strength, and hope in conquering Lyme disease.
But I am even more grateful for the love shared among those I have opened up to in these past seven years.
Lyme led me to Love. It might not make sense to you now. or ever. But to some of you, it does make sense. And I thank you for being a part of my life, a part of my soul, and a part of this energy source.
The following is an excerpt written by Dr. B. Robert Mozayeni in our book Lyme Savvy: Treatment Insights for Lyme Patients and Practitioners
Can Bartonella be One of the Biggest Global HEALTH Problems?
Typically, the medical profession has believed that in human mammals Bartonella is only an issue in the immunosuppressed. In our published case series of 296 patients we found evidence of Bartonella in about 62 percent of patients who thought they had chronic Lyme Disease.
All mammals can carry Bartonella. It has even been found in whales. Although Bartonella has been found in all mammals, all of the attention has been directed to rats, bats and cats.
Many veterinarians and physicians believe Bartonella is a significant global public health microbe. Dr. Edward Breitschwerdt believes that Bartonella is a big global health problem and at this point in time, it is not fully recognized as such.
Bartonella could turn out to be an important co-factor in some forms of immune suppression, including HIV and Malaria. Some very recent strains of Bartonella have been found in AIDS patients. Dr. Barbara Koehler at UCSF discovered a strain of Bartonella that was named after her, Bartonella koehlerae, in an AIDS patient. Our group published the first eight cases of Bartonella in immuno-competent patients.
There are a lot of people with Bartonella out there who think they have Lyme Disease, so the term Lyme Disease has become way too broad. It has become the term that the popular, in the vernacular, describes everything that is not understood – it is what I call #Lyme Disease.
Because that thinking – that logic – lives on the Internet, the definition of Lyme Disease keeps expanding. On the other hand, scientists try to keep their definitions pretty tight so they can have logical discussions and move the science forward. So they come up with a concept, narrowly define it and give it a name so that they can talk about it and then move it forward.
With the rise of the self-taught citizen scientists and the availability of information on the Internet, there is no logical process to guide a scientific discourse leading to an improved understanding of the problem.
Instead what you get on the Internet and in popular discussion is a maelstrom of confusion and anxiety mixed with an occasional nugget of incredibly valuable information if you can recognize it as you wade through all the blogs of suffering, confused, anxious patients.
From Galaxy Diagnostics:
Lauren (age 34) – Postural Orthostatic Tachycardia Syndrome (POTS)
Lauren was working as an emergency veterinarian in Washington, DC. In 2004, she received a cat bite during an examination. Within a single day, the bite became infected. Lauren was hospitalized and given IV antibiotics. While in the emergency room, she began to feel dizziness and developed blurred vision. Lauren assumed it was from exhaustion but was still feeling symptoms after three or four days.
Lauren was placed on oral antibiotics and returned to work. During the next few weeks, her symptoms worsened. Her vertigo increased and she grew increasingly tired and weak. She was unable to stand for long periods of time and had to stop performing surgery because her vision was too poor. Her increasing dizziness reached the point that she could no longer drive to work. She also started having trouble focusing and had problems with her short-term memory. Within three months, Laura had to stop working completely.
Lauren saw more than 20 physicians including the Mayo Clinic in 2006 where she was diagnosed with fibromyalgia and dysautonomia, specifically POTS (Postural Orthostatic tachycardia Syndrome). POTS is a chronic illness that is characterized by the body’s inability to make the necessary adjustments to counteract gravity when standing up. Patients experience tachycardia (rapid heartbeat), constant headaches, dizziness, weakness and extreme fatigue.
Essentially, this meant that a single movement like standing up could cause her heart to beat so fast she could pass out. Drug treatments were helping, but Lauren was still very disabled. From 2006-2009, she was essentially wheelchair bound and could not leave her house.
In 2009, after three years of POTS treatment and six years of being disabled, Lauren went on antibiotic treatment for over a year and saw slow improvement in her symptoms.
Lauren is now able to drive and go out of the house without assistance. Her energy level is higher and she has regained some independence. She still suffers from blurred vision, some aches and pains, but she is hugely improved today compared to the same point a year ago. She remains optimistic she will be able to resume a normal life. She recently gave birth to her first child and is doing well.