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The Duration of Your Illness Does Not Determine Whether or Not You Will Heal

Posted on May 2, 2016 in Blog |

  May is Lyme Disease Awareness Month. I will spend this month pulling quotes from our about to be released book Lyme Savvy: Treatment Insights for Lyme Patients and Practitioners. I apologize for the delay in its publication. We had planned to be in print by May 1, but my father’s sudden illness and subsequent death pushed back the production schedule.   “It does not appear the duration of your disease determines whether or not you will heal. This is great news for patients who have been ill a long time.” – Dr. B. Robert Mozayeni, Lyme Savvy   When I saw Dr. Mozayeni for the first time in September, 2009, I had been sick for 29 years without reasonable explanation or viable treatment. Having been sick for so long, I almost thought I would never heal. I had seen too many specialists, developed too many rare conditions. I had almost given up hope. After 19 months of treatment, I tested clear for Bartonella in April, 2011 and have tested clear for the five years since. I am still battling Babesia, which at this time is incurable but treatable. This past weekend, I planted herbs and annuals in a small garden. My hands had not touched dirt since 2008 I think because of the vast fatigue these co-infections cause. Healing is happening.   I was the typical “List of Symptoms” patient. The simplest way to present my own history to you is to show you how many different types of physicians I saw, some of the major medical events that occurred, and of course, the various diagnoses I was assigned. I know many patients can probably relate to this snapshot. Physicians I saw for symptoms Often, I saw more than one each of the following: Cardiologist, Chiropractor, Dentist, Dermatologist, Endocrinologist, Gastroenterologist, Internist, Neurologist, Gynecologist, Neurosurgeon, Ophthalmologist, Optometrist, Oral Surgeon, Orthopedist, Osteopath, Otolaryngologist (ENT), Physical Therapist, Psychologist, Psychiatrist, Rheumatologist, Surgeon, Urologist Sharon’s Symptom History 1981: viral meningitis, unexplained fatigue and exhaustion 1984: diarrhea, abdominal pain, loss of appetite, mouth ulcers, grinding teeth/jaw pain 1988: elevated gastrin levels 1993: depression and anxiety 1995: migraines 1996: h.pylori infection 1999: shattered right foot...

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Death of My Dad

Posted on Mar 28, 2016 in Blog |

After 26 days in the hospital, my dad died this past Good Friday at 5:43 am. We didn’t know his illness was terminal until a week before he passed.  Until then, my sisters and I kept vigil 24/7, promising never to leave Dad alone as per his request. I am attaching his obituary here.  Many people in the Northern Virginia area knew my dad (Earle C. Williams).  He left quite a legacy for so many. Visitation will be at Fairfax Memorial Funeral Home on Wednesday from 2-4 pm and 6-8 pm. The funeral is tentatively set for Thursday morning, exact time and location still being determined.  It has been a bit difficult to get things locked in on a holiday weekend. Death, grief, sadness, all play a significant part in a person’s healing or lack therof. I am very fortunate to be surrounded by people who are sensitive to my physical needs for rest and quiet.  But as anyone who has experienced the death of a parent or close grandparent knows, this is not easy. I still can’t talk much. Just going through the motions and trying to take care of Mom. Please pray for her to find comfort and peace during this time.  They were married for 64 years. I cry at the oddest, insignificant and significant moments. “Who will say grace?” was today’s moment. Share...

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Lyme Savvy Manuscript Is with the Formatter

Posted on Feb 29, 2016 in Blog |

Four years after I started this book, I have finally sent it to the formatter for pricing and a schedule.  I am beyond excited to get this book out.  Nervous, but excited. So, why am I nervous? Because my heart and soul has gone into this project. Dr. Mozayeni and I have spent countless hours talking, writing, editing, and even negotiating what goes in and what doesn’t. It has been easy for me to send out blog postings of what I think and feel, but I have pretty much kept mum on what Dr. Mozayeni has been thinking.  I want to make sure I have it right.  I have to be sure he is ready to put his words into a published format.  So, some of these chapters, I have been chomping at the bit to publish! I think the Lyme patients will be satisfied and encouraged by this book.  I think Lyme patients will feel validated. And they will find specific suggestions to help them heal. I’ll keep you posted.  Thank you to everyone who has helped me along this journey.  Gratitude abounds. Share...

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Power in Making a Choice, Not in Having Control

Posted on Feb 6, 2016 in Blog |

My friend whom I have never met in person, Laurie Foley, entered hospice this week. You know when you talk to someone about something that you have been seeking wisdom for and they just HAVE it? Like it’s no big deal? And you are standing there trying to figure out how the hell to get a piece of it? You know . . . when you want what they have . . . I want Laurie’s heart, her wisdom. My favorite line in here: “I spent many, many, many hours on the Internet scared the crap outta me, and it just made me want more control. But what I learned in the process of all that suffering, through wanting control, was that what felt better was to make a choice. So the power – MY power – lies in making a choice, not in having control.” http://www.37days.com/strong-offer-friday-transform-terror-into-commitment-and-entitlement-into-hope/?utm_campaign=coschedule&utm_source=facebook&utm_medium=Patti%20Digh&utm_content=strong%20offer%20Friday%20:%20transform%20terror%20into%20commitment,%20and%20entitlement%20into%20hope Share...

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Our Secrets – What’s Mine? What’s Yours?

Posted on Dec 18, 2015 in Blog |

I’m sitting on my living room couch with tears streaming down my face proving that I am tired, stressed, and emotional. I have a pretty good idea of what’s causing it, but it’s something I haven’t been ready to talk to many people. This is a BIG pity pot I am sitting on right on. In the 12 Step Recovery program that I participate in, one of our slogans is: We are only as sick as our secrets. I have been keeping this a secret and it’s making me sick. As most of you know, I started treatment for Bartonella, a bacterial co-infection of Lyme disease about six years ago. I finished treatment four years ago and have tested negative for Bartonella since then. SUCCESS. I then was at a plateau for a few months, undergoing more testing, trying to figure out why I was still experiencing many symptoms. I had originally tested positive for Babesia, a parasitic co-infection of Lyme Disease. Its symptoms are likened to malaria. This is when we discovered I had Protomyxzoa Rheumatica FL 1953, a parasitic co-infection of Lyme Disease. We were thinking that this new protozoa might be causing a false positive on the Babesia test. The protozoa had been discovered by Dr. Stephen Fry only a few months prior. Imagine just finding the parasite and then trying to figure out how to treat it or kill it. Look at how long we have known about cancers and the continuing search for a cure. Luckily, I have a brilliant physician who tried a few things and they seem to have worked. If all goes as planned, next week will be my last IV for treatment for the PR FL 1953 and the multiple variants that had taken up residence in my blood. Four months ago, I started developing new symptoms and other symptoms were worsening. That’s a scary place to be when you are supposedly healing. Dr. M sat me down and explained me that all my new symptoms were typical Babesia symptoms. He said the Protozoa didn’t give me a false positive. He reminded me of when he had put me on the...

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