Lyme Savvy | A one-of-a-kind collaboration between patient and doctor

Navigation Menu

Healing from Lyme Disease TOGETHER

Posted on Jan 6, 2014 in Blog |

This past weekend I experienced one of the most energetic, productive days I have had in years, not weeks, not months – YEARS. I attribute this to my treatment protocol to kill the co-infections of Lyme disease I have been battling for four years now.  It has been a long, slow battle, but it is obvious I am towards the end of this war, and, clearly, I am winning. More than a year ago, my physician said, “A good day is proof you don’t have permanent damage.”  And he is right. Four years ago, I don’t think I would have believed his statement.  I didn’t have enough faith, and I hadn’t met anyone else who was healing. Then, I started meeting other patients with Lyme disease in my community.  I found other Lyme patients on Facebook.  I found other patients through my blog.  I met patients who were further along in treatment and who were healing.  I met others who were behind me in treatment. I started connecting with others by asking questions: Did you have these symptoms? What meds are you on? Do you ever feel like . . . ? How does your family react? What do you do when your friends ask if you are well yet? People were very kind to me.  They shared what they knew, what they had tried, how their friends and family had responded, and how they dealt with the reactions.  I started to feel less isolated and less of a freak.  There were other people out there with medical histories very similar to mine.  I wasn’t a hypochondriac.  I was sick.  And, I wasn’t along anymore. A few people shared their success stories with me as they were in remission or well.  They no longer had symptoms and were still testing negative after treatment.  There weren’t many, but a few and I clung to almost every word they shared.  I needed that hope.  I needed to know there might be an end to my suffering. During treatment, I stayed in contact with people asking them: Is this what herxing is? Does it get better? How do I lessen the symptoms?...

Read More

Random Thoughts from Random Discussions with Lyme Patients

Posted on Jan 4, 2014 in Blog |

I talked with a few Lyme patients yesterday. People call me asking for input, my perception, advice, or just validation. A few things I find myself often saying: I’m not a physician and I don’t know what you have merely by you telling me your symptoms. I don’t know what treatment you should be getting or what meds you should be taking. I can only share my experience. But that doesn’t mean my experience will work for you. No, I don’t know how you got infected. I can make some guesses, but that’s all they are; guesses. I will tell you that after having cats for 50 years, I will never get a cat again because the risk of re-infection of Bartonella is too high for me. It’s not something I am willing to go through again. Yes, cats can be successfully treated for Bartonella, but they can become reinfected again with the next mouse or shrew they catch. I don’t know which symptoms necessarily go with each co-infection. I had symptoms for 30 years. Some are better now that I am clear of Bartonella, but some are the same or worse. They might be symptoms of Bartonella AND Protomyxzoa Rheumatica. I don’t know. And honestly, in the end, I don’t think it matters. With the development of incredible testing these past few years, I think it is better to rely on solid data for diagnosing co-infections. Galaxy Diagnostics (www.galaxydx.com) is the world’s best lab for testing for Bartonella. The three day blood draw is 90% accurate and they will PCR the blood and tell you what strains of Bartonella you have. No more guessing. Fry Labs (www.frylabs.com) in Arizona is the best for finding that pesky Protomyxzoa Rheumatica and its variants. The PR 1953 panel is very enlightening. You will see the buggers light up. It’s quite remarkable. If your LLMD says he doesn’t have time to do research and to keep up on the latest data, find a new LLMD. This field needs our best and brightest to keep researching, to keep trying new things. What worked five years ago is NOT what should be used now....

Read More

Misophonia

Posted on Jan 2, 2014 in Blog |

While sitting idly at the hair salon today, trying to take the grey out of my hair, I was enjoying reading my copy of The Art of Fear. I was delighting in the fact that on January 2nd, I was sticking to my goal of reading for at least a half hour daily. And then SHE sat next to me; old enough to know better, but not giving a rat’s ass. More than 40 years of age, she sat waiting for her grey hair to go blond again, while chomping, smacking her gum. If she spoke as angrily as she chewed her gum, she must be one hell of an angry woman. Not to mention that as a close family relative observes, “a woman chewing gum looks like a cow chewing cud.” And that certainly won’t help you make friends or gain a man’s interest. When I was a teacher, one of my classroom rules was, “If I see it or hear it, it goes in the trashcan.” Actually, I have that rule anywhere I can get away with it. My stepdaughter Heather claims I ruined gum chewing for her for life. Now she can’t stand to see or hear peopIe chew it. Today, I wanted to reach across and yank that damn wad out of her mouth and stick it on her phone that she was just as loudly tapping on. After three angry glares that netted me nothing, I did the only thing I could do: I started playing my solitaire game with the sound turned up 100%. This is the first time I have played an entire game with the sound on. The shuffling of the cards, the dinging that occurs each time a card is played . . . most of the time, it is annoying. For those fifteen minutes, it was delightful. From Wikipedia: Misophonia, literally “hatred of sound”, is a neurological disorder in which negative experiences (anger, flight, hatred, disgust) are triggered by specific sounds. People who have misophonia are most commonly angered, and even enraged, by common ambient sounds, such as other people clipping their nails, brushing teeth, eating crushed ice, eating,...

Read More

15 Books in 2013

Posted on Jan 2, 2014 in Blog |

Usually, I have a pretty good list of books that I have read over the past year, and usually, filled with comments about what I thought about each one. This year, not so much. I was spending a lot of my time WRITING my Lyme Savvy book, so I was doing a lot of research and reading articles, parts of books, etc. Here is my list of the books that I read in their entirety. It is what it is. If you are female and read no other book, please read Carry On, Warrior by Glennon Melton. You will connect. If you are working on your meditation practice (or lack thereof), try Passage Meditation by Eknath Easwaran. If you want a great fiction piece, try Adirondack August by Kay Benedict Sgarlata. I know Kay and I heard part of this book two years ago in a writing workshop with her and I have been anxiously awaiting this book!! When you are reading it, you will think you know. But you won’t know. And then you will know this is a great book! If you went to Randolph-Macon College, or grew up/live in Ashland, VA (or really anywhere in the south), read The Journal Keeper: A Memoir by Phyllis Theroux. If you believe that each body contains energy that is passed between people, that we are all part of one great source, if we are all somehow connected, read The Three Waves of Volunteers and the New Earth by Dolores Cannon. If you have any interest in the effects of Post Traumatic Stress Disorder, if you like military related books, read After Action by Dan Sheehan. I know Dan. The book was really good. The last 10% of the book was AMAZING. I wanted to highlight every sentence. If you want to lead a happier life, have a happier marriage, and learn to be a better person, try The Peacegiver: How Christ Offers to Heal Our Hearts and Homes by James Ferrell If you want to read the patient’s point of view about Lyme Disease, try Out Of The Woods: Healing Lyme Disease Body, Mind & Spirit by Katina Makris....

Read More

Being

Posted on Jan 1, 2014 in Blog |

One of my goals is to just write and post (with no editing). Here goes . . . I planned to write a really amazing, insightful, uplifting blog post today to start the new year. I read everyone else’s as they came through the email and on Facebook. I sat here instead and sulked. I don’t want to do anything today. I don’t want to talk about last year. I don’t want to plan for this year. I don’t want to make resolutions. I don’t want to set goals. Today, I want to play with my puppies, read, clean out my closet, do some needlepoint, and nap. I have to do laundry, so I guess I will put that on my want list to so it looks more politically correct. 2013 was great and it sucked. Done. 2014 is going to be similar. So what. I can’t change what happens. I can’t control it. I just have to get through it. I’m not even in a bad mood. I think I’m tired of having to DO things. I don’t want to “accomplish” anything today. I just want to BE. There you go. That’s what I want. For 50 years, I have been obsessed with DOING. And today is the first time I have wanted to just BE. Last night, as we sat around the dinner table, we talked about what our “word” for the year should be. We get to choose our words. I was trying to choose between Write, Health, and Uplift. But nix those. This year, my word is BE. I want to BE ME. I want to be authentic, real, honest, straight-forward. I want to surround myself AGAIN with those like me. I don’t like to play games. I hate politics. I resent pretense. I can’t stand schmoozing or schmoozers. I lost my puppy almost a year ago. I miss Riley. I adore these two puppies sleeping beside me right now. But Riley and I had a connection I never had with another animal. And I miss that. I miss him. Earlier in the morning before he was killed, Riley played with me in bed, letting...

Read More
css.php