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Sharon’s Annual Letter – a Little Late

Posted on Jan 7, 2018 in Blog |

Dearest Friends and Family, As I prepare to write each year’s letter, I reread the previous year’s letters. Rereading my 2016 letter was like reopening a fresh wound and rubbing salt in it. My grief has “improved,” lessening in intensity and frequency, but it remains constant. I have always believed that even our worst moments offer gifts, if not immediately, eventually. I know God is always with me, guiding me to my next growth opportunity. Work Jeff is continuing with Home Equity Builders (www.hebinc.com). We are readying for a big master bath renovation. I am continuing with www.myNeighborsNetwork.com. Gifts At the end of February, I was dreading the first anniversary of Dad’s admission to the hospital and the 26 days that followed. That same week, I started dreaming in images, something I have never done before in 54 years. It became so intense and obsessive, I bought some paint and brushes and try to paint what I saw in my dreams. I had never painted, drawn, or done anything artistic before that week. The entire month of March, through the first anniversary of Dad’s death, I painted. And I have not stopped. Nor have the images in dreams and visions. A friend saw my work and encouraged me to join our local Artist Studio. I did and then I participated in my debut show in the local art tour. I sold my three largest pieces and did very well. It was a fantastic start to a new passion. I have also completed commission works for individuals as far as Las Vegas, Nevada. You can see some of my pieces at www.sharonraineyart.com. I had two more successful art sales/shows in December. In the meanwhile, Jeff started perfecting his work with the camera lens. His favorite subject is a pair of bald eagles near our cabin in Maggie, VA. Though, honestly, I love his scenic pieces more so. He can capture birds in flight and sunsets on the pond. I think I have talked him into joining the local Artist group as well and participating in local events. Entertainment In September, Jeff and I saw Sting in concert at Wolftrap. Score...

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Miscellaneous Aids During Treatment

Posted on Dec 5, 2017 in Blog |

I am reprinting this chapter from our book, Lyme Savvy: Treatment Insights for Lyme Patients and Practitioners because i think it might help you develop your own Christmas list and your own “how to survive the holiday” ideas . . . Miscellaneous Aids During Treatment Sharon I used to believe when I got sick, I could go to the doctor, get a prescription, take a pill, and I would be healed of whatever ailment had inhabited my body. I used to believe a holistic approach to health and well-being was a nice thought, a possible avenue, but something that mostly appealed to those “hippies” or those with a lot of money to throw around. I used to believe organic food was another way to rip off the customer at the checkout line. And then I got the Lyme Disease diagnosis. Dr. Mozayeni, with his credentials and research strengths, advised me at my second appointment to go “organic.” Some of my blood work came back showing I had significant levels of arsenic in my blood. I completely understand the panic and desperation late stage cancer patients’ experience. I found myself willing to try almost anything to see if it would alleviate my pain and fatigue. I believe in traditional medicine and treatment protocols, but I also now believe a holistic approach is the only way to heal from a systemic, chronic disease. We have gathered a list some patients have found helpful. What worked for some individuals may or may not work for you. And works now may not work six months from now. The point is, if you want to try it, go for it. People are constantly asking me for the “secrets” to healing. There are none. It’s a combination of ingredients unique to each patient. These are items that were simply helpful during the healing process. They are listed alphabetically. Attitude – A positive attitude is a critical element in my recovery. Even when I’m not feeling well, I know it will get better. At the most difficult and fatiguing phase of therapy, I mentioned to Dr. Mozayeni that I was trying to accept “the new normal”...

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Co-infections, Co-infections, Co-infections

Posted on Oct 27, 2017 in Blog |

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. I encourage you to read articles from www.whatislyme.com, galaxydx.com, lymeadvise.com, igenex.com, and other Lyme savvy websites. 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. Share...

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What We Need Our Friends and Families to Know

Posted on May 19, 2017 in Blog |

Patients with Lyme Disease or co-infections of Lyme Disease are NOT: lazy, faking, sensationalizing, imagining things; refusing to learn or grow, avoiding responsibility going to grow out of it crazy contagious; it is safe to hug us “just depressed”; if we are depressed, it is because of living with Lyme, not the other way around. Patients with Lyme Disease or co-infections of Lyme Disease ARE: physically ill actually, very ill overwhelmed and frustrated their body cannot work the way they need it to experiencing real pain, often excruciating unique in that we each present with different symptoms; no two patients are the same examples of what can happen to your friend, sister, cousin or boss who has been sick for a long time with no answers; we share our stories so others may find a shorter path to a correct diagnosis Patients with Lyme Disease or co-infections of Lyme Disease DON’T want to hear: You don’t look sick! Are you ever going to heal from this? (Would you ask a cancer patient this question?) But you seemed fine ten minutes ago. But I thought you rested yesterday. Oh good! Now you are better and you can go back to the way you used to live/work! Maybe you should see a psychiatrist. But you looked fine yesterday. I already told you this. Get a grip; there is nothing wrong with you. So what, I get rashes all the time. If this was real, the CDC would do something about it. I know people who have real problems. Are you sure you have a good doctor? When you are going to finally be rid of this thing? What time is dinner? Are you sure you have Lyme Disease? How can anyone have that many symptoms? Do you really need to take all those pills? Isn’t it time you get over this thing? Patients with Lyme Disease or co-infections of Lyme Disease NEED: validation they are truly ill and require treatment help accomplishing the simplest of tasks your love and your physical and emotional support to feel wanted your respect others to know we are not weak hugs loved ones to make...

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Disease Transmission to Humans

Posted on May 16, 2017 in Blog |

The following is an excerpt from Lyme Savvy: Treatment Insights for Lyme Patients and Practitioners. We open this section talking about Bartonella, but Lyme disease is also discussed. Keep reading to find out more. Disease Transmission to Humans Dr. Mozayeni There are many ways to get Bartonella, including from your cat. When infected, cats have a million fold higher circulating level of Bartonella. If they are indoor/outdoor cats or feral cats, 80% or more carry Bartonella. The numbers are probably higher but even the sickest cats will have four-to-five days of the month during which they will no detectable Bartonella in their blood. There are many ways to get Bartonella: from fleas, cats, and potentially other biting insects strongly suspected but not strictly proven. So it becomes a much more prevalent infection. The other Protozoa infections probably follow the same pathways in terms of the ways they are spread. Vectors are agents that transmit the various Protozoa that makes people sick. Protozoa get into and on red cells that can be transmitted by mosquitoes, known transmitters of Protozoa. It stands to reason, then, that Babesia and Babesia-like things can be transmitted by mosquitoes. Mosquitoes may be the principle vector. Here we all are worried about deer ticks and most patients with Lyme Disease cannot remember a deer tick bite. But everyone I know can remember a mosquito bite. Everyone I know has probably run into fleas more often than they have run into deer ticks. There are all kinds of fleas. There are sand fleas at the beach. There are fleas on your cat, fleas on your dog. Nine percent of dogs carry Bartonella but when they do, their blood levels are a lot lower so I don’t think they represent as big a reservoir or a risk as cats do. The landscape of chronic infection is far bigger than just Borrelia. This probably explains why patients with these chronic symptoms will all classify their condition as Lyme Disease; it punches their card into a support system. It is a way to describe what they have. But it retards scientific progress because the term is too broad, given the...

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