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Describe a Conversation with Your Physician

Posted on Apr 2, 2013 in Blog |

April 3rd – #HAWMC, @wegohealth Describe a conversation with your physician. Conversation with my doctor last Thursday, March 21st. ‘So, your protomyzoa rheumatica is now negative, but you still have a variant present,’ he said. ‘Damn you!’ I blurted out. I just KNEW I was in remission. I had two negative tests, then a positive, then two more negative. He wants three in a row to consider it remission. I was so sure I had even planned a celebration dinner the next night with family and a friend. I was THAT sure. Yes, I still have a few symptoms, but come on . . . It took a few minutes to sink in. I was just so certain. ‘So what’s next?’ I asked. ‘We develop a new protocol to get this last bit,’ he replied calmly. He is so good at calming me. Even his word choice: ‘bit,’ meaning tiny, miniscule. We figure out the next protocol of meds, then I ask the dreaded question: ‘How long?’ He gives me an answer that does not include a number. So I repeat the question, ‘How long?’ 5-8 months. Except I don’t start on the new antibiotic for another month, so I know it’s really 6-9 months. A year ago, he told me this protocol for the PR would probably be 6-9 months. So, while I am hoping for a shortened period, I know it might be another year. The good news is that now I have killed two infections in my body over the past 3.5 years. I am stronger. What’s left is weaker. So, I am hoping it really will be just 6-9 months. So, a third phase, unanticipated, but I know I can do it. I can kill this bastard. Just need the right combination of meds and supplements and continued healthy behaviors and thoughts. P.S. – I did apologize for the ‘Damn you’ comment; don’t like to shoot the messenger. He understood. Share...

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Vertigo

Posted on Jan 1, 2011 in Blog |

A year ago today, I experienced the first of three days of vertigo. It was not a good start to 2010. Some of the Bartonella was hanging out in my Eustachian tube causing inflammation and thus the vertigo. I remember waking up in bed, turning my head from the side to face forward to see what time it was. When I turned my head, the entire room came with it, reminding me of a very bad hangover I had in my twenties, or making me think I was on a topsy-turvy boat. Then, the nausea came. Luckily, I had an empty stomach, so there were no further consequences for that. When I turned my head, the walls moved with me; I had no solid grounding. I turned over to get up, thinking it would go away, or if I got upright, I could correct all this. I got turned over, my legs off the bed onto the floor. But I could not sit up. Every time I put my hand against the bed to push myself up to sit, I fell over to the side again as though being pulled flat against the bed. The more I struggled to sit up, the more disoriented I became. I could not get my bearings; I could not get stabilized. And of course, it was first thing in the morning . . . I had to pee! It’s the ‘little’ moments like these that create some of my most vivid memories of what Bartonella / Lyme disease does to a person. My husband is in the other room, not far away, but in this moment, I am so disoriented, so confused, I can’t even cry out for him. I am alone in a terrifying moment battling this disease. And at this moment, I have no idea if this condition is going to last a few more moments, an hour, or a day. This is the moment I want to freeze for those who DON’T suffer from Lyme disease. Because these moments happen any day, any time, for any length of time. That is the uncertainty of Lyme disease. On a daily basis....

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Resolute in Resolutions

Posted on Dec 30, 2010 in Blog |

I hate resolutions. For years, I rebelled and swore I wouldn’t make any. Call me the rebel, but I thought it was ridiculous to make a list of things I wanted to commit to only not to follow through on this within the next sixty days. I refused to make a list. Until a couple of years ago. I guess I thought I was being too obstinate about the whole thing. Maybe I should try. So I made my list and then I taped it in my journal in about five places so that sporadically, through the year, I could check to see how I was coming along. I made a list of 14 items ranging from taking Stephen to get his driver’s license to painting our office. I also included getting an agent or self-publishing my book. I sort of needed to include in there to finish writing the book first. But 2009 was the year I was diagnosed with Lyme Disease and Bartonella. And suddenly, like, within a week’s time, my list didn’t have a whole lot of significance. Last year, my resolutions for 2010 were pretty simple: do whatever I needed to do to heal from this wretched disease. So, this year, I have two lists. The first list is of ‘resolutions’ of things I want to do that I think are life changing. Actually, they are merely a continuation of things I have already started doing, but they have helped me in healing and in living. They are broken down into time periods: Once during the year – get a Lyme test from Galaxy Diagnostics lab Once a month Record the books I read Once a week Forgive someone – let them off the hook Try something new Say Thank You to someone – in writing or in person Once a day Keep a kindness or gratitude journal Tell one person I love them or how I appreciate them Do something nice for someone else Laugh Do something to promote healing for self So, I’m going to admit that the first one, I really want everyone else to put on their list of resolutions. Please. Just...

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Sharon’s Annual Christmas Letter 2010

Posted on Dec 17, 2010 in Blog |

Dear Friends, Each year, I start the process of writing this letter by reading what I wrote the previous year, returning me emotionally, mentally, and physically.  Sometimes, that’s a good thing; sometimes, it’s a painful memory.  I often shed a few tears thinking of what others and I have endured in the past year, not necessarily sad tears.  Just tears.  Often, it is accompanied with gratitude for my journey in the last twelve months.  This year is no different. Businesses:  Jeff signed a big remodeling contract in September for Home Equity Builders (www.hebinc.com).  Other remodeling jobs have been coming in throughout the year.  Our Handyman Division has been consistently busy throughout the year.  We are thankful to have survived the difficult economic times. myNeighborsNetwork is now offering software licenses to anyone who would like a similar network in their communities.  We currently have interest for networks outside Baltimore, MD and Boston, MA.  Contact me at Sharon@myneighborsnetwork.com if you are interested. Earlier this month I attended a luncheon in Richmond, VA hosted by the First Lady of Virginia honoring Neighbors Foundation (www.neighborsfoundation.org) for our efforts of sending care packages to military personnel serving in Afghanistan and Iraq.  Both Governor Bob McDonnell and former Governor Douglas Wilder gave inspiring, entertaining speeches in addition to First Lady Maureen McDonnell. Neighbors Foundation is currently trying to raise $5000 to help with postage costs through the end of the year.  All donations are 100% tax deductible.  It costs $14.95 to send each care package.  No donation is too small. Neighbors Foundation was also handed the reins for putting on the annual 4th of July Fireworks in Great Falls, VA this year.  Jeff had been chairing the committee for a number of years, but this year, Mike Kearney handed it all over to the foundation.  We had a very successful first year and are ecstatic to have the responsibility of continuing this favorite community holiday event.  I don’t know how Jeff survives each year, but he does an awesome job and the fireworks are always first class. Anyone who parties at our tent will attest to this. Heather & Joey: Heather continues working...

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Telling My Lyme Story

Posted on Aug 3, 2010 in Blog |

Posted in Posh Seven magazine: http://www.poshseven.com/the-quiet-disease-lyme.html 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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