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Posted on Feb 9, 2016 in Blog |

I still believe in all simplicity, that love is the answer to everything for everyone. However, we must love ourselves first and foremost. If we cannot take care of ourselves, we cannot help or connect or love anyone else. Then we must love our families next. They must come before anyone else (except ourselves). We have rings around us that we must honor. And we must pay attention to those rings/circles and figure out who belongs in each circle. The lines can blur sometimes. When we are filled with anger, depression, or resentment, we cannot love. When we feel sorry for ourselves, we cannot love others. We can’t let others love us. Love has to be a free flowing energy that moves easily between people’s souls. Share...

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It’s a Blip

Posted on Jan 24, 2016 in Blog |

I saw my latest blood smear last week.  It was not what we expected.  I thought I had beaten the Bartonella and Protomyxzoa Rheumatica and the plan was to next start attacking the Babesia.  The plan has now changed. I go back into full treatment late next week after the “after effects” of my latest vacation wear off.  I will start back on anti-malarial meds. Once I get the routine down for those meds, and once we get the blood work PCR confirmation from Galaxy Diagnostics, I will then start back into Bartonella treatment. I don’t know how long this protocol will be.  I didn’t ask. Dr. M reminded me that when I went through treatment in 2009, the treatment protocol was version 1.0.  Now, he is on version 8.0 or so.  It will be better this time around.  He is also adding two new drugs for me to hopefully reduce the side effects of the medications.  These will hopefully help with pain, mood, anxiety, and depression. I’m also still getting Toradol (NOT Tramadol) injections each time I go up there.  These are anti-inflammatory only but help ease my lower back pain tremendously, temporarily (24 hours).  He has been able to reduce my pain considerably. I know Babesia is considered incurable.  But if anyone can cure me, I believe it to be Dr. M.  No one else is even trying.  He has some amazing research done and some incredible theories that I am willing to help him test out. The Bartonella was supposedly incurable as well back in the early 2000s, but Dr. M has put patients in remission for five and more years.  I thought I was cured.  I was in remission for 4.5 years.  So, I will go through treatment again and plan for a much longer remission next time. The Protomyxzoa Rheumatica is a huge unknown.  It was discovered by Dr. Steven Fry in 2011.  Dr. Fry and Dr. M are the only two physicians I know of who are researching a treatment for it. Imagine finding a certain cancer less than five years ago and how long it would take to find a cure for...

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The Best Part of My Day

Posted on Apr 7, 2014 in Blog |

From my latest column at Women’s Voices magazine: When our son Stephen got into the car from school each day, he was quick to tell me the worst part of his day. It often involved another student making fun of him or not doing something the teacher wanted them to do. Stephen was an ardent rule-follower, so when someone else broke the rules, it was quite disturbing to Stephen. Almost as a self defense mechanism, I started asking Stephen, “What was the BEST part of your day?” He would think hard with the initial answers usually being “lunch” or “recess.” When I started ruling those options out, he looked more closely at his interactions with others. And eventually, he started finding more “best parts” of his day. When I started treatment for advanced Lyme disease, there were days and weeks that were absolutely miserable. Stephen would come home and ask me how my day was, and I immediately went to the worst of my day. With a small grin on his face, he would ask, “Well, then what was the BEST part of your day?” The student had become the teacher. For my birthday last month, I didn’t do anything in particular. But the best part of my day was eating lunch with my husband and two employees. The food was delicious, but it was the time we spent laughing, talking, and connecting that made it really special. Two days after my birthday, I watched my 58 year old husband Jeffrey endure a heart attack. For 36 hours we went from a little cough to bronchitis, to a possible pulmonary embolism, to a heart attack, to a heart attack and a blood clot, to the catheterization lab where they placed four stents, three of which are in the “widowmaker” artery. The weird part of this is that throughout the entire crisis, I was the calm one. Let me rephrase that. After I watched him have the heart attack, with his blood pressure up at 213/175, and thinking he would die at that very moment; AFTER that, I was overcome with the most mysterious but completely grounded confirmation that...

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Telling My Lyme Story

Posted on Aug 3, 2010 in Blog |

Posted in Posh Seven magazine: I am an “indoors” person, preferring air conditioning to the local humidity. I like to read, needlepoint and write. I thought I was the least likely person to contract Lyme disease. Yet, it happened to me. My diagnosis came at age 46 after six years of chronic pain, varying, migrating symptoms, 21 physicians, many diagnoses and a tenacious uncle who demanded proper testing for Lyme. In less than a year’s time I deteriorated from walking three miles a day to getting out of bed in the morning suffering excruciating pain, saying to my husband, “I can’t go through another day feeling this much pain.” My symptoms were vague and varied: memory loss, clumsiness, back pain, sleep problems, fatigue, muscle weakness, ankle and knee pain, tennis elbow, hot flashes, depression, dry skin patches. Each doctor listened to my specific complaints, examined me, and then offered his/her own explanation and treatment. ‘Middle age’ or ‘emotional’ was mentioned often. Some diagnoses were accurate—hypothyroidism or gallstones—and necessitated treatment, but they are also symptoms of a larger disease process, needing to be viewed through a greater lens. Sharon’s Symptom History: Recurrent sinus infections, night sweats, hot flashes, dry skin Clumsiness, falling easily, muscle weakness, swollen joints, tooth decay Gallstones, H.Pylori/digestive problems, fatigue, hair loss Gastrin level elevated, hypothyroid, vitamin D deficiency, forgetfulness, trouble focusing Stomach atrophy, headaches, daytime sleepiness  and insomnia, elevated heart rate, ideopathic  intermittent right temporal waves, ideopathic hypersomnia Persistent, dry cough, peripheral neuropathy, numbness in hands and feet, chest pains, muscle twitching Occasional blurry vision, incontinence, back pain, cyst on spinal cord Lyme disease is termed the “Great Imitator;” it mimics many other medical conditions. It is often misdiagnosed for years and then often improperly treated. The ELISA Lyme test is the simplest, least expensive, easiest to perform and most common Lyme test ordered. It is an automated test, allowing for faster turnover and less costs. It is also up to 80% inaccurate with false negatives. The Western Blot (WB) test, however, is not automated. It takes time to grow the cultures and it costs more money. Over six years of treating me, the neurologist ordered...

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Down the Rabbit Hole

Posted on Jul 24, 2010 in Blog |

It was a year ago this month that I began the final leg of my journey to a Lyme diagnosis. It originated last July with a ‘Lupus’ diagnosis. As I walked out to my car, I called my sister, the nurse, to tell her the verdict and to find out more about this disease I had only vaguely heard of. A few days later, my uncle wrote me a relatively short email. The jist of it was, ‘You don’t have Lupus. You have Lyme. Go to a Lyme Literate Medical Doctor and get a Western Blot blood test from IGenex lab in San Diego, CA.’ That email and further conversations with my uncle are reminiscent of the scene from ‘The Matrix’ when Morpheus tells Neo that he has a choice. He can learn what the world really is, the reality of life. Or he can go back to being blissfully ignorant. He offers Neo two pills. ‘This is your last chance. After this, there is no turning back. You take the blue pill – the story ends, you wake up in your bed and believe whatever you want to believe.’ Pause. ‘You take the red pill – you stay in Wonderland and I show you how deep the rabbit-hole goes.’ Since last July, I have been going farther and farther down the rabbit-hole. In this Lymeland, I have learned the difficulties in finding a qualified physician to correctly diagnose and treat this insidious, invasive bacteria. I got the Western Blot blood test from IGenex lab and still had two physicians tell me I didn’t have Lyme. The first one said I had bursitis in my hip. He didn’t have an explanation for any of my back pain or other mysterious symptoms. The second physician told me unequivocally I did not have Lyme. He couldn’t tell me what I did have and he was refusing to test me any further to give me a diagnosis. ‘You mean you’re going to stop looking for what’s causing all these symptoms? All my pain?’ ‘Yes. We’ll just treat you symptomatically for a few years and then maybe the testing will improve and we...

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