tag:blogger.com,1999:blog-88788637020382009092023-11-15T22:18:14.592-08:00The Leftover KitchenYou can always find enough ingredients around to make tasty food.brewfunkhttp://www.blogger.com/profile/07826217449507031566noreply@blogger.comBlogger67125tag:blogger.com,1999:blog-8878863702038200909.post-90345824107937622052010-11-14T16:28:00.000-08:002010-11-14T16:28:59.216-08:00Elsie's GumboI spent my last year of high school in southeastern Louisiana. This area is an amazing microcosm unlike any other part of our nation. It's an island of cultures and traditions rarely practiced outside it's geography. Folks there talk differently, cook differently, and rely heavily on the bounties of nature. People there shrimp, crab, fish, and hunt recreationally. This provides an interesting mix of ingredients for cooking. <br />
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I met my first wife in Louisana. I spent a lot of time in her mother Elsie's kitchen. Elsie grew up in a family with many children in a small town in bayou country called Raceland. Her family spoke french in their home. Their life was not easy, but they knew how to use the land and water to provide a significant portion of their sustenance.<br />
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Elsie's cooking talents were born of this simple life. She would send Jan and I to the grocery store with a three item list. With these three items and whatever was in the house, she would craft a delicious and satisfying meal. After we had eaten her creation my tongue would be smacking my face.<br />
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Everyone knows that gumbo is a staple of Cajun cooking. When I was in Louisiana I was exposed to two types of Gumbo, chicken and sausage gumbo and seafood gumbo. Chicken gumbo frequently contains okra. If fresh okra is used it is sliced and stewed down with canned tomatoes. Elsie said that the acid in the tomato broke down the sliminess of the okra. Otherwise tomato is not a common ingredient in gumbo. The preferred sausage is andouille, but smoked sausage is often substituted, and it's saves a Cajun a buck. Seafood gumbo is likely to have shrimp, crabmeat and oysters but not fish. <br />
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I've eaten soups that people call gumbo, but they aren't what I experienced in my time in Lousiana. This is usually because the the gumbo was not started with a roux. The foundation of Cajun gumbo is the roux. The classic French roux is flour and clarified butter. But we are talking about southern Louisiana which is definitely not dairy country. Furthermore, with these people just trying to get by, cooking oil is much cheaper. The Cajun version of the roux is 2 parts flour and 1 part cooking oil. It is slow cooked in a frying pan or soup pot until it is toasted and brown. This provides an intensely flavored base for the soup. Elsie told me that you usually use a darker roux for chicken gumbo than you do for seafood gumbo. <br />
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I started my gumbo by smoking 4 chicken thighs on my charcoal grill with hickory chips. Elsie would have boiled her chicken and saved the water for the soup. Grilling the chicken is a great way to add more flavor to the dish. <br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg86pCBBJKHutMbWO9rkVTqHYoU5KEWCUApNXA8x3qhupPrmPKkrNogi6RmZnc6SGJYuESy1LRqAJNcV_CrWdR3aiygdAXnJdnQelJ9YOUA_VFxrAsEkbBcwyA2g9JwkcxxOyO6sdf-Ix8M/s1600/chicken.jpg" imageanchor="1" style="clear: left; cssfloat: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="173" px="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg86pCBBJKHutMbWO9rkVTqHYoU5KEWCUApNXA8x3qhupPrmPKkrNogi6RmZnc6SGJYuESy1LRqAJNcV_CrWdR3aiygdAXnJdnQelJ9YOUA_VFxrAsEkbBcwyA2g9JwkcxxOyO6sdf-Ix8M/s200/chicken.jpg" width="200" /></a></div>Of course the most important step in making gumbo is to make the roux. I used about 1/3 cup of oil and 2/3 cup of flour. I usually start off with medium low heat, but as it cooks I turn the heat down. You have to stir this very frequently because the flour settles to the bottom of the pan and browns. It takes about 30 minutes before it's done, depending on the level of color and flavor you want.<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEggeEIOX4Jnv2coZsEdskBJotTxAiLi0WLfnDPk0s55ye947WYJuTLYpoM-lQQjGqrx14CXMPZtOcf1WSHknQ6cgeA4vGwnPVreluLrm-hjnfNuoKnWEqSueiSq1GdrG0ASpf8n1-Aw3gb7/s1600/blended.jpg" imageanchor="1" style="clear: right; cssfloat: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="149" px="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEggeEIOX4Jnv2coZsEdskBJotTxAiLi0WLfnDPk0s55ye947WYJuTLYpoM-lQQjGqrx14CXMPZtOcf1WSHknQ6cgeA4vGwnPVreluLrm-hjnfNuoKnWEqSueiSq1GdrG0ASpf8n1-Aw3gb7/s200/blended.jpg" width="200" /></a></div>Here's an image of the flour and cooking oil blended together before cooking. <br />
While the roux is browning and you are stirring frequently, it's time to chop up some onion, celery, garlic, green onion, and parsley. Bell pepper is commonly used too. Elsie called these seasonings. Once your roux is brown and toasted you can add all of the seasonings and sliced sausage to the roux. Notice how dark the roux got. <br />
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<div class="separator" style="clear: both; text-align: right;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhEHUjH2SY2vV75azhhnJRh8T4ChZEqXqnd1Lwq5YY1ERMsMGEkLwRMwAQ-UHoMqQ9H2-KpAD9erp0tl6F95d2ah_07Ii_P-JVCHiQU2y4xIS0zEC90eWHzND6iFQZtNj_ry6vVgFRbYM0o/s1600/rouxmix.jpg" imageanchor="1" style="clear: left; cssfloat: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="149" px="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhEHUjH2SY2vV75azhhnJRh8T4ChZEqXqnd1Lwq5YY1ERMsMGEkLwRMwAQ-UHoMqQ9H2-KpAD9erp0tl6F95d2ah_07Ii_P-JVCHiQU2y4xIS0zEC90eWHzND6iFQZtNj_ry6vVgFRbYM0o/s200/rouxmix.jpg" width="200" /></a>After softening the seasonings in the roux I added the smoked chicken that I had shreaded. I also added a can of cut okra. The next part is very important. I was taught not to put hot water in the pot with your roux. It is said that it seperates from the broth and you end up with a nasty oil slick. After adding several cups of cold water I seasoned with some dried oregano and basil, fresh cracked pepper, and about a 1/4 cup of hot sauce. I simmered that for about an hour or so. </div><br />
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Louisiana Gumbo is always served over rice. Rice is a major staple in Louisiana. Any dish with a sauce, including all soups and stews, is commonly served over rice. Standard long grain rice is the preference. <br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhFNTbInfEXZGSRao2ohePpC5JNJaVCAuq2WBufoQLmWdS5ytwfmvuqOpxP7ZMMLBhSYLgySLXZLiE_IpEWt7acEhN9sPPQYxyWjJ7TDvearfgdJGHUvZs8d_t1mDxpQhrn5qLMLVMpznX4/s1600/gumbo.jpg" imageanchor="1" style="clear: right; cssfloat: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="184" px="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhFNTbInfEXZGSRao2ohePpC5JNJaVCAuq2WBufoQLmWdS5ytwfmvuqOpxP7ZMMLBhSYLgySLXZLiE_IpEWt7acEhN9sPPQYxyWjJ7TDvearfgdJGHUvZs8d_t1mDxpQhrn5qLMLVMpznX4/s200/gumbo.jpg" width="200" /></a></div>Gumbo is a special meal in Louisiana. It is served at parties and family get togethers. It's something that's commonly made for a Sunday dinner because it's a bit of work. I've even had turkey dinner for Thanksgiving that included a pot of Gumbo. <br />
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I'm so glad that I got spend time cooking with Elsie. She taught me so much about making delicious food. I'm eating the gumbo I made right now. I think Elsie would approve.brewfunkhttp://www.blogger.com/profile/07826217449507031566noreply@blogger.com1tag:blogger.com,1999:blog-8878863702038200909.post-43797414450315237912010-10-23T15:42:00.000-07:002010-10-23T15:42:32.913-07:00Fish TacosFrom what I understand there are two schools when it comes to fish tacos. Some fish taco recipes call for lightly breaded cubes of fish fried in oil. The other recipes call for grilled or sauteed fish that is flaked after cooking. I've never been a fan of fried food and I hate what cooking with hot grease does to the inside of your home. <br />
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I marinated a couple pieces of mahi mahi with lime juice, fresh ground pepper, salt, cumin, and shot it with cooking spray. It's very important to put oil on your fish if you are cooking it on the grill. It keeps it from sticking and falling apart when you turn it. <br />
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</div><div style="text-align: left;">Baja fish tacos are commonly served with a cabbage slaw. I shredded about a cup of cabbage. To that I added a couple of spoonfuls of sour cream, juice of half a lime, teaspoon of Penzey's red chipotle powder and a few leaves of cilantro. A little less lime juice would have done since the sour cream has some acid in it. </div><div style="text-align: left;"><br />
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</div><div class="separator" style="clear: both; text-align: justify;">I grilled the two pieces of fish on my medium sized Weber grill, but I only started enough charcoal for the small grill. With the fish in the middle of the grill, I could warm my tortillas around the fish. When the fish was done I flaked it. </div><div class="separator" style="clear: both; text-align: justify;"><br />
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</div><div class="separator" style="clear: both; text-align: left;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipCKY7vhDbTGj3Rx-6mZQnJWJZWhtKKOVrAAvGRnkdsR9UP2rIZZUOtcUb6gBzyDzbh9D5HRfxD3U5zdc1nRgxGU1JwNMZ8Wty4voJRH7L2aOnBpwUmPP1UYl40IhlxyWSZVo5cYVCsZRE/s1600/Fishflake.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="239" nx="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipCKY7vhDbTGj3Rx-6mZQnJWJZWhtKKOVrAAvGRnkdsR9UP2rIZZUOtcUb6gBzyDzbh9D5HRfxD3U5zdc1nRgxGU1JwNMZ8Wty4voJRH7L2aOnBpwUmPP1UYl40IhlxyWSZVo5cYVCsZRE/s320/Fishflake.jpg" width="320" /></a></div><div class="separator" style="clear: both; text-align: left;"><br />
</div><div class="separator" style="clear: both; text-align: left;">When you eat at a restaurant in Mexico they always bring condiments like diced onions, salsas and lime wedges to the table. I chopped a few ingredients to embellish our tacos. Cilantro, tomato, avocado and lime wedges. </div><div class="separator" style="clear: both; text-align: left;"><br />
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</div><div class="separator" style="clear: both; text-align: left;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYl_p0jrl0H_z6iTTinqjm_WAfPVhHqs2ujbHUPbEkWcpLXnlZjQu6KJnsmfTq0LlD40nV3EED1-tXT1EjDm53RsPHTf1mUxmVgRD05KDDEUk6gy0R_cHXncEwa6-8pkmSQ-uLAa2yWcQG/s1600/Widits.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="239" nx="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYl_p0jrl0H_z6iTTinqjm_WAfPVhHqs2ujbHUPbEkWcpLXnlZjQu6KJnsmfTq0LlD40nV3EED1-tXT1EjDm53RsPHTf1mUxmVgRD05KDDEUk6gy0R_cHXncEwa6-8pkmSQ-uLAa2yWcQG/s320/Widits.jpg" width="320" /></a></div><div class="separator" style="clear: both; text-align: left;"><br />
</div><div class="separator" style="clear: both; text-align: left;">And finally the finished product. The tortillas were a little tough due to cooking them on the grill. I'd probably be better off just steaming them in the microwave. It was still delicious. </div><div class="separator" style="clear: both; text-align: left;"><br />
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</div>brewfunkhttp://www.blogger.com/profile/07826217449507031566noreply@blogger.com1tag:blogger.com,1999:blog-8878863702038200909.post-7502665161726261332010-10-19T18:18:00.000-07:002010-10-19T18:18:53.857-07:00What's Cooking?There are many reasons I love to cook. First of all I love to eat. But I want to eat foods with flavor and variety. There is no room on my palate for bland food. <br />
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Those of you that I've cooked for know my saying, "I'm glad you enjoyed what I made for myself." The truth is I get great pleasure from watching and listening to you enjoy my creations. <br />
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For me cooking is great therapy. I find that it's a great way for me to leave my thoughts behind. I can spend time by myself in the kitchen, listening to some good music and slicing and dicing to my hearts content.<br />
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I cook by feel. I try to avoid measuring devices as much as possible. A little of this and a little of that serves me well. If I am intrigued by a dish that I read about or see on a cooking show, I'll search out some recipes on the internet. But I rarely cook specifically to any recipe. I'll look at a few and make my own interpretation. <br />
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I try to be <span style="font-family: "Times New Roman"; font-size: 12pt; mso-ansi-language: EN-US; mso-bidi-language: AR-SA; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-US;">conscious </span>about what ingredients are in the refrigerator and plan meals accordingly. Wednesday evenings I am usually home alone and I make supper from whatever I can find in the house. <br />
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</div><div align="left">This was a Wednesday supper. It started with a leftover flank steak salad. I boiled about 5 oz of linguine. While the noodles were boiling I made a dressing of soy sauce, fish sauce, sesame oil, honey, and chili paste. I tossed the salad with the dressing and then I tossed in the hot cooked noodles. The heat from the noodles warmed up the salad and wilted the lettuce just a bit. It was really yummy. </div>brewfunkhttp://www.blogger.com/profile/07826217449507031566noreply@blogger.com0tag:blogger.com,1999:blog-8878863702038200909.post-35729719362502398702010-10-11T18:24:00.000-07:002010-10-12T15:03:19.444-07:00What's Next?Lyme disease has been the focus of our lives for the past couple of years. It is still with us, but has less of an impact on our daily lives than in the past. Lynette's recovery has progressed to the point that she is able to live a normal life. She is definitely not back to where she was before she got sick, but there aren't many tasks that she can't undertake. <br />
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The rest of Lynette's recovery is going to depend on her body's ability to repair itself. The nerve damage caused by her immune system's reaction to this infection will be long to heal. She would love to be able to run again. I would love to face her across the net on the tennis court. <br />
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Since I've not had much to report about, I will be changing the focus of my blog. I have much to say about many other subjects and I love to write about them. I look forward to using this space to share my pleasures, annoyances and anything else that flows from my finger tips. <br />
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I love to cook and I love share pictures and tactics of my cooking methods with anybody who's interested. I will be sharing my passion for cooking on this blog. But I will also be talking about life and Lyme disease and whatever else is on my mind. <br />
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I guess I need a new name for my blog. Any suggestions?brewfunkhttp://www.blogger.com/profile/07826217449507031566noreply@blogger.com0tag:blogger.com,1999:blog-8878863702038200909.post-4056159454416736582010-08-27T18:02:00.000-07:002010-08-27T18:08:06.326-07:00Wonder WomanLynette's employer changes their work hours during the summer. They work 4 ten hour days and have Friday off. Lynette doesn't really care for it much, but she does make good use of the extra day off. Last Friday she helped Lauren and Danielle move into their dorm. Lynette wasn't yet home when I fell asleep a little after 11:00 that night. The next morning she was up at 6:30 headed off to Anna's volleyball tournament an hour away in Reidsville.<br />
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It's 9:00 pm on Friday. Lynette is not yet home this evening. She is at the Wake Forest University volleyball match. I have not seen Lynette today but I can tell she has been a busy girl. She cleaned our bathroom from top to bottom. She vacuumed from our bedroom carpet the evidence that we have a dog. She washed Sparkles (Danielle's duct tape covered car). She drove my truck to have lunch with Anna at school. From there she took our recycling to the dump where she sorted and tossed various bottles and boxes. She filled my truck up with gas! And when she got home, she cleaned the recycle bins and backed the truck in with extreme precision!<br />
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We went to see Dr. J two weeks ago. He was proud to let us know that his daughter Jordan has been cancer free for 3 months. There was a mix up in the appointment scheduling. Anna and Lynette were each supposed to have an appointment but the office had only booked time for one. Dr. J saw Anna and Lynette in a single appointment slot and only charged us for one. I think the mix up worked out in our favor. <br />
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He did not make many changes to Anna or Lynette's treatment protocols. He told Lynette to keep doing the same thing. He reduced Anna's drug holiday from 3 weeks to 2 because he doesn't think she is progressing quickly enough. She admittedly is not very disciplined about taking her antibiotics. He told us to come back in 6 months. <br />
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A year and a half ago Lynette couldn't walk. Her capabilities now are a testament to the medical treatment that she has received. What is the IDSA thinking when I see a person whose quality of life has improved infinitely by the exact treatments that they disapprove of?brewfunkhttp://www.blogger.com/profile/07826217449507031566noreply@blogger.com2tag:blogger.com,1999:blog-8878863702038200909.post-6533889983328090922010-06-14T18:59:00.000-07:002010-06-14T18:59:45.043-07:00We still have LymeThings are much better than they were not too long ago, but I have been reminded lately that Lyme is still in our life. Side effects of medicines. Symptoms of infection. Expensive prescriptions. We're not out of the woods yet. <br />
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Lynette was featured in the Patient Spotlight section of <a href="http://www.jemsekspecialty.com/shownews.php?id=30">this month's newsletter</a> from Dr. J.brewfunkhttp://www.blogger.com/profile/07826217449507031566noreply@blogger.com1tag:blogger.com,1999:blog-8878863702038200909.post-31541011172287443582010-04-29T18:58:00.000-07:002010-04-29T18:58:17.311-07:00Happy AnniversaryMy father drove down from Richmond last year around Valentine’s Day. He came to help me install the chairlift so that Lynette could get up and down the stairs. At that time Lynette could hardly walk on level floor with a walker. It was great to have his support and help. Lynette’s first appointment with Dr. Fishman was the Monday after that weekend. <br />
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My father recently made a return visit. I took Thursday and Friday off last week and we built a storage room under our screen porch. This time dad saw a different Lynette. On Saturday she and Anna got up early in the morning to head off to a softball tournament. They made it back in the afternoon only to turn around and head off to a concert. On Sunday Lynette and Anna took off to Boonville to our niece’s wedding shower. My dad was amazed and happy to see how much Lynette has progressed. <br />
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Lynette and Anna are in Washington DC right now on a school field trip. Lynette managed to arrange an appointment with Dr. Jemsek while she is up there. She had to fight the unfamiliarity of the subway. I looked at Google maps and street view images and the Metro map and did my best to give her accurate instructions ahead of time. But things never work out exactly as you plan. Lynette still managed to catch up with the kids after her appointment. <br />
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Lynette had a lot of questions for Dr. J and he made some tweaks to her therapy. Tomorrow is the anniversary of Lynette's first visit to Dr. J. <br />
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It's also our 16th wedding anniversary.brewfunkhttp://www.blogger.com/profile/07826217449507031566noreply@blogger.com2tag:blogger.com,1999:blog-8878863702038200909.post-18121560588890556982010-04-08T18:18:00.000-07:002010-04-08T18:18:06.105-07:00Still RisingThere was good news in the scientific Lyme community today. Connecticut physician Sin Hang Lee along with his colleagues at Milford Hospital have developed the first highly specific and sensitive DNA test for early infection with the Lyme disease bacteria. Traditional Lyme disease tests check for your body's response to the infection. In most patients these antibodies are not present in large concentrations in early infection. This results in many false negative serological Lyme tests. The new test detects the bacteria in the bloodstream in early infection before it has a chance to migrate to the body's organs and away from the bloodstream. Early detection is important. It's the most opportune time to treat the infection effectively. <br />
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In another Lyme related development, scientists at the US Centers for Disease Control and Prevention have found a gene in the Lyme bacteria that when deactivated, blocks its ability to infect it's host. This clue about the inner workings of the bacteria opens the door to new vaccine techniques.<br />
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We had the great opportunity over Easter weekend to borrow Lynette's folk's RV. We drove it down to Myrtle Beach for a 4 day weekend. The weather was beautiful and we had a fantastic time. Things were a lot different for us last Easter. Lynette was still having trouble walking on her own. It was great to see Lynette doing what she wanted to do, without being encumbered by her health. She spent most of the weekend doing her favorite thing. Spending time with her daughters. <br />
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A year ago around Easter time I compared <a href="http://brewfunk.blogspot.com/2009/04/she-is-risen.html">Lynette's recovery</a> to the resurrection of Christ. She continues to amaze me. She is still rising.brewfunkhttp://www.blogger.com/profile/07826217449507031566noreply@blogger.com0tag:blogger.com,1999:blog-8878863702038200909.post-41247038845167152612010-03-18T18:18:00.000-07:002010-03-18T18:18:59.293-07:00There's No Lyme Disease in North CarolinaDave Tierney is a commercial airline pilot and former marine. In 2007 Dave was diagnosed with Multiple Sclerosis and lost his flying privileges. He went through the traditional MS treatments and his health deteriorated. Dave suspected Lyme disease and made an appointment with Dr. J. Dave was treated with IV antibiotics followed by oral antibiotics. Dave returned to the cockpit about 13 months after his Lyme diagnosis. <br />
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Dave lives here in North Carolina where we do. He has become a tireless advocate for Lyme disease sufferers in our state. Dave sent emails out to all of the Lyme interested people that he could find. From that Dave is able to update many of us on matters related to Lyme in North Carolina. Dave has reported back on trips he's made to Raleigh to meet with state officials and participate in hearings and other forums involving Lyme. <br />
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Today Dave sent an email letting us know that North Carolina now has a county designated as Lyme endemic. Two cases of Lyme disease in Wake county have been confirmed in individuals with no recent or relavent travel history. This meets the CDC's criteria for endemnicity. Here's a <a href="http://wake.mync.com/site/Wake/news/story/49586/lyme-disease-confirmed-in-two-wake-co.-residents/">link</a> that Dave sent to an article on a local website. <br />
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As I've stated many times before, some of Lynette's worst symptoms are the neuropathy in her hands and feet. Her left hand is the least affected. The nerve damage in her hand has affected her motor nerves as well as her sensory nerves. The numbess doesn't seem to be as impeding as the motor problems do. If I ask her to hold her hand level with her fingers together and then spread them open they go in all directions. You should see her trying to put on her jewelry in the morning. Those tiny clasps are good hand therapy. <br />
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The numbness and lack of motor control exists in Lynette's feet and legs as well. But let's face it, you don't have to hook a necklace clasp with your toes. But it does affects ability to walk. Lynette has never been a flat shoe kind of girl but she's been wearing nothing but flat shoes since she left the walker behind. A week or two ago she bought a low wedge sandal that she thought she would be able to walk in. Well they seemed to work out ok and today she was in one of her old higherish shoes. She looked good.brewfunkhttp://www.blogger.com/profile/07826217449507031566noreply@blogger.com1tag:blogger.com,1999:blog-8878863702038200909.post-70632853477882750862010-03-09T19:12:00.000-08:002010-03-09T19:19:48.453-08:00One Year LaterSomeone called me from Acorn Stair Lifts today. They said it was a courtesy call for people who had shown interest in their products in the past. We were fortunate enough to have a friend let us borrow an Acorn Stair Lift when Lynette was having so much trouble getting up and down the stairs. My mother-in-law Beverly is a real estate agent. She had a client who was moving one of his parents to a retirement community. The house that was being sold had a stair lift and the client offered it to my mother-in-law after Beverly told him about Lynette. We installed the chairlift in our house on 2/15/09. <br />
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</div>The stair lift is a chair with a motor and rechargeable battery. It rides on a rail that is fastened to the treads of your stairs. The chair rides up and down the rail using a gear system. The battery recharges when the chair is at the top or bottom of the rail. <br />
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The rail that came with our stair lift was one step too short for our stairs. We managed the extra stair and the stair lift was an amazing assistant when we most needed it. I recall contacting Acorn, perhaps to inquire about a longer rail. When they called today the man on the phone seemed somewhat surprised that we no longer needed their product. I was happy to tell him the person who had used their product had an experienced improved health and no longer required the stair lift.<br />
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Lynette walked on the walking trail at work yesterday. It's a moderate 1.6 miles but she said it's the longest walk she has taken since she was sick. She is still struggling with neuro problems in her hands and feet. <br />
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Anna has a school field trip to Washington, DC in April. Lynette volunteered to be one of the chaperones. Lynette will be able to get a visit in with Dr. J while she is up there. This will save us plenty of time and money by not having to make a trip up there. Lynette's worried she is going to get lost going from the kids current field trip venue to Dr. J's office and back the kids new current field trip venue after the appointment. I'll have to make her up customized instructions with rail line colors, rail line changes, and Google street view pictures to keep her from getting lost.brewfunkhttp://www.blogger.com/profile/07826217449507031566noreply@blogger.com0tag:blogger.com,1999:blog-8878863702038200909.post-69211451824317851632010-02-22T16:41:00.000-08:002010-02-22T16:41:35.400-08:00Letter From Lyme DadI got this letter from my good friend Jen. A father speaks from his heart about the remorse he has for doubting his daughter's iillness. But he studies and understands that she is really sick. I have never doubted my wife's symptoms, but I did doubt her self diagnosis of Lyme. I have some empathy for this guy. <br />
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Dear Family of a Lyme Disease patient, <br />
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I am writing this letter to all parents and family members who are witnessing their children, wife, son, father, aunt, uncle, cousin, etc. struggle with Lyme Disease. <br />
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I am one of you. <br />
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For more than 6 years my daughter has suffered through this ugly, dark disease. <br />
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She has experienced horrible migraines, severe joint & muscle pain, nausea, vomiting, extreme fatigue and loss of her ability to speak or think logically (these are just a few of her symptoms). <br />
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She has become unable to work. She has been forced to move back into our home at the age of 23 (she is now 29). She has virtually lost her 20's, one of the most productive and exciting time of her life. <br />
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We have taken her to every known medical specialist in southern California as well as three different General Practioners. <br />
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She has been diagnosed, at differing times, as having Chronic Fatigue Syndrome, Chronic Pain Syndrome, Fibromyalgia, Lupus, Psychosis, and MS (please notice that all of these are either syndromes or descriptions of symptoms; none of them are diseases). <br />
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For the first 4 years of her struggle, I was not a good parent, even though I thought I was. <br />
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My daughter didn't have any outward sign of her illness. She looked "normal". After many, many blood tests, MRIs, CAT Scans, x-rays, psychological tests; everything came back "normal". <br />
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I was, and sill am, one of the world's biggest cynics and skeptics (I'm originally from Missouri - so "Show-Me"). <br />
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Surely if you are as sick as you say you are, there must be something that will show up in your blood tests or on x-rays. <br />
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You can't possibly be this ill and not have something tangible to show for your symptoms. <br />
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You're either just faking it or your lazy or it's psychosomatic or your trying avoid the real world. <br />
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Get off your lazy butt and get some exercise or get a real job or face up to life like the rest of us. <br />
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That's the way I approached her illness. It's time you took control of your illness and will yourself well. <br />
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I was so far off-base. It took an outstanding Lyme Literate Medical Doctor to show me the error in my approach with my daughter and to show me the reality of this disease. <br />
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My daughter and I have both suffered because of my ignorance (I'm not saying all of you are ignorant, I'm saying I was ignorant. To be ignorant simply means to be uninformed not stupid). I am still working to rebuild the closeness we had before Lyme. <br />
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Lyme Disease is real, the pain is real, the problem with logical thought is real, the lack of energy is real, etc., etc., etc. <br />
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If your child or family member has been diagnosed with Lyme Disease, they are just as sick, if not more, than someone who has a more "traditional" illness, like Lupus or Multiple Sclerosis or Cancer. <br />
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I've done all the study, I've been with my daughter at all of the appointments, I've watched the misery she's been through. <br />
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Hey they just can't help the way this disease treats them. It's not their fault. <br />
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We as family members need to be there to support them. They don't need our pity. They don't need our skepticism. They don't need our criticism. <br />
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They need our understanding. <br />
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If you as family members will take the time to study this disease, you'll see that it is real. The little buggers who have invaided their bodies are real and they are making our loved ones sick. <br />
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Please spend the time you currently spend trying to figure out why your loved one acts the way they do really studying the disease. There are volumes being written on the internet as well as new books being published everyday on this disease. <br />
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We can't possibly understand the way they feel, not unless we have the same bacteria in our bodies. <br />
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My daughter has a long way to go before she's back to where she was 6 years ago. She has a lot of work and pain to endure before she can get there. <br />
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She certainly doesn't need someone who claims to love her causing her any more pain than she has already. <br />
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Families. from one who has been in your shoes, please let them know you love them. <br />
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Let them know you're there to help them. <br />
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Let them know that there's no way you can possibly understand their pain, but that you wil try to understand their illness. <br />
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I think one of the most important things I've come to learn is that my daughter's disease may be God's way to teach me a lesson. <br />
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I'm not saying God gave my daughter Lyme Disease, but He may be using this disease to teach me how to love, how to be patient and how to be more understanding. <br />
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I wish you all good health and I hope that none of you will ever have to experience what our Lyme Disease loved ones are experiencing. <br />
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Sincerely, <br />
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LymeDadbrewfunkhttp://www.blogger.com/profile/07826217449507031566noreply@blogger.com5tag:blogger.com,1999:blog-8878863702038200909.post-79774734128518520832010-02-05T18:00:00.000-08:002010-02-05T18:00:24.192-08:00Introducing: Alinia FunkDuring Lynette's last visit with Dr. J he told her that he wanted her to take the anti-parasitic drug Alinia. He explained that the metabolites of the drug were effective only within the digestive system. A purge for your GI track I suppose. While he was talking about this medicine he was also writing prescriptions for Lynette for the Alinia and for Levaquin. It wasn't until we got home that we realized that he'd written Lynette's presciptions in the name of Alinia Funk. <br />
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</div><div align="left" class="separator" style="clear: both; text-align: left;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjPf0HUHty4fdja_s8JF_umByzLvDEeCwzpXyjI0r87rKAv4o2YyxDsP_aem3DMB3yETJ10CU0zJy03SvdYyNNYWDN-bgpTFkjfGaafaDnKJoIf5KEa_BZMOYjbeMUJH3RAnbzMrbBT9htM/s1600-h/alinea+Rx.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" kt="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjPf0HUHty4fdja_s8JF_umByzLvDEeCwzpXyjI0r87rKAv4o2YyxDsP_aem3DMB3yETJ10CU0zJy03SvdYyNNYWDN-bgpTFkjfGaafaDnKJoIf5KEa_BZMOYjbeMUJH3RAnbzMrbBT9htM/s320/alinea+Rx.jpg" /></a></div><div align="left" class="separator" style="clear: both; text-align: left;"><br />
</div><div align="left" class="separator" style="clear: both; text-align: left;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjq-F_x94Jksh29skEGolZdQre7vCeZVqu3uSnqqftn7wP6bb2vI4_tTgVYbVOVFwKCmypdTbU0DOaHBTlNnhczVtj8myBweVEav79sdNf08N_0d_rwgctD-1ylZW3c7qoN6_89XTTHW0NS/s1600-h/Levaquin.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" kt="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjq-F_x94Jksh29skEGolZdQre7vCeZVqu3uSnqqftn7wP6bb2vI4_tTgVYbVOVFwKCmypdTbU0DOaHBTlNnhczVtj8myBweVEav79sdNf08N_0d_rwgctD-1ylZW3c7qoN6_89XTTHW0NS/s320/Levaquin.jpg" /></a></div><div align="left" class="separator" style="clear: both; text-align: left;"><br />
</div><div align="left" class="separator" style="clear: both; text-align: left;">Lynette being the digital maven that she is, scanned in copies of the errant prescriptions and attached them to an email that she sent back to JSC. Dr. J responded at 10:00 pm one night this week suggesting that Lynette's "mama" had named her after one of the most potent anti-parasitic medicines on the market. He said the new scripts would be on the way. </div><div align="left" class="separator" style="clear: both; text-align: left;"><br />
</div><div align="left" class="separator" style="clear: both; text-align: left;">Lynette sent a gift card to Dr. J today and put her name, as the benefactor, as Lynette Alinia Funk. </div><div align="left" class="separator" style="clear: both; text-align: left;"><br />
</div><div align="left" class="separator" style="clear: both; text-align: left;">The new paper prescriptions came today with the corrected name. But the envelope was still prolonging the joke.</div><div align="left" class="separator" style="clear: both; text-align: left;"><br />
</div><div align="left" class="separator" style="clear: both; text-align: left;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgAw263JGAKn3GVjxU5Q_AgBFgrBCfTQPPSVWLJKPceBCJjtILmt3W7UFZzp6mjGYRi8l4Tx5RLYsEZgVgWQxor4HgUNdCJqYtKFY1Wvm70Ji4YdBe2DxMKl2usi5abHC7Rn0v4YrGtSq_R/s1600-h/Envelope.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" kt="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgAw263JGAKn3GVjxU5Q_AgBFgrBCfTQPPSVWLJKPceBCJjtILmt3W7UFZzp6mjGYRi8l4Tx5RLYsEZgVgWQxor4HgUNdCJqYtKFY1Wvm70Ji4YdBe2DxMKl2usi5abHC7Rn0v4YrGtSq_R/s320/Envelope.jpg" /></a></div><div align="left" class="separator" style="clear: both; text-align: left;"><br />
</div><div align="left" class="separator" style="clear: both; text-align: left;">Dr. J has a lot going on in his life. I can understand how he can get distracted. But he is still capable of maintaining a wonderful sense of humor. And he's helping a lot of people. </div>brewfunkhttp://www.blogger.com/profile/07826217449507031566noreply@blogger.com0tag:blogger.com,1999:blog-8878863702038200909.post-40730958321037371672010-01-30T13:29:00.000-08:002010-01-30T13:29:04.185-08:00Our Nation's Capital<div align="left" class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjdtI_edTqrAK0NW8TaD4CRpeY49gFl5WVbclrgX7XK0lWpINyeufZN6hlIDXtIWqvBars6eounLValgRTLYWLNiNKuiS6CfHaDI6kuwDukp2vh4Bpniscix-kVHK7SznP32t-7LEHM98b0/s1600-h/Capital.jpg" imageanchor="1" style="clear: left; cssfloat: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" kt="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjdtI_edTqrAK0NW8TaD4CRpeY49gFl5WVbclrgX7XK0lWpINyeufZN6hlIDXtIWqvBars6eounLValgRTLYWLNiNKuiS6CfHaDI6kuwDukp2vh4Bpniscix-kVHK7SznP32t-7LEHM98b0/s320/Capital.jpg" /></a></div>We left Clemmons last Friday night headed towards my dad's house in Richmond, VA. It was nice to spend the day with my dad and his wife Margie. Sunday morning we headed for Washington, DC which was about a 2 hour drive. <br />
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<div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">We found a nice hotel in the West End section of Georgetown called the River Inn for $130 a night that was about 3 blocks from Dr. Jemsek's office. We booked on Orbitz and I suspect the rate was a seasonal one because I tried a "mock" booking for May and the rate was about $80 higher. There was no on-site parking, and overnight parking was $30. Ouch. Nevertheless the hotel room was very nicely appointed with a Queen size bed, a sleeper sofa and a good sized kitchenette. It was also in the middle of a neighborhood which provided for a little quieter environment. As much as we liked this place, we are considering Arlington for our accommodations next time. There are some hotels across the river in close proximity to Metro stops that would be very convenient and significantly cheaper. The closest Metro stop to Dr. Jemsek's office is at the George Washington University Hospital which is about 4 blocks from his office.</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
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<div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgbuQhsgkWv0L2DZGjzP8mimzSglDmrqNiriW0zJyZjlmTDGNxpzsk8DfpN2zMLpNdy_SLKLCZ2aKF4My70AQc99lqCyJaM04ac08MbkfwlDBdeXb9G2aKYcIeF64Q5oMfdnrgk0PgRN8GY/s1600-h/Castle.jpg" imageanchor="1" style="clear: left; cssfloat: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" kt="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgbuQhsgkWv0L2DZGjzP8mimzSglDmrqNiriW0zJyZjlmTDGNxpzsk8DfpN2zMLpNdy_SLKLCZ2aKF4My70AQc99lqCyJaM04ac08MbkfwlDBdeXb9G2aKYcIeF64Q5oMfdnrgk0PgRN8GY/s320/Castle.jpg" /></a></div>After checking into the hotel Anna, Lynette and I struck out towards the Metro station on our way to the Mall. We visited the Smithsonian castle<br />
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<div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: left;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj1SADlOCa5wHqRbhsh3uhEA7kcfF1q3xrjfQDJqtshKvopi_Xl3u-jofwCglUAWSZEnwzv9ZMYCccW3etPItj0a_iT6RUM2930sHSEza0nyWQhwF4rMwUcDIMVcf1cwAcCMIKO4pQmZgv6/s1600-h/AirandSpace.jpg" imageanchor="1" style="clear: left; cssfloat: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" kt="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj1SADlOCa5wHqRbhsh3uhEA7kcfF1q3xrjfQDJqtshKvopi_Xl3u-jofwCglUAWSZEnwzv9ZMYCccW3etPItj0a_iT6RUM2930sHSEza0nyWQhwF4rMwUcDIMVcf1cwAcCMIKO4pQmZgv6/s320/AirandSpace.jpg" /></a>As well as the old Air and Space Museum and the Museum of Natural History.</div><div class="separator" style="clear: both; text-align: left;"><br />
</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: left;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5O5-EDwz7XJrMIdneM2xfXOiI8b3FEK0L5p4a0Knba7fvSYzJ7BsxhQoEO92prBMIqYz2mXJjX9PDmkFWcS9cT6SKjyfnp61-Eczn6BKMPB7MUKVhgGmbrVmorhGEJxKM3_EX1s0SLB7m/s1600-h/Goofin.jpg" imageanchor="1" style="clear: left; cssfloat: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" kt="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5O5-EDwz7XJrMIdneM2xfXOiI8b3FEK0L5p4a0Knba7fvSYzJ7BsxhQoEO92prBMIqYz2mXJjX9PDmkFWcS9cT6SKjyfnp61-Eczn6BKMPB7MUKVhgGmbrVmorhGEJxKM3_EX1s0SLB7m/s320/Goofin.jpg" /></a>We had fun on the mall goofing around and taking some pictures. </div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><br />
</div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: left;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjCYv0EEkbueG8YY50YauV32an4cWkmq-JZLw7K2m7mQ2RXiTHWz951hmlBeaQLje3BjM_u83rQw6d5PnKzZ74TZ4J7tNb-ZHDqs81qY9tvChsfeZX_-S4kNg4uHUBplm2zCObIn0aDtDaK/s1600/albino.jpg" imageanchor="1" style="clear: left; cssfloat: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" kt="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjCYv0EEkbueG8YY50YauV32an4cWkmq-JZLw7K2m7mQ2RXiTHWz951hmlBeaQLje3BjM_u83rQw6d5PnKzZ74TZ4J7tNb-ZHDqs81qY9tvChsfeZX_-S4kNg4uHUBplm2zCObIn0aDtDaK/s320/albino.jpg" /></a>We were fascinated by an apparently deranged albino squirrel. </div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: left;">The rain held off until it started to get dark. We made our back to the Metro station and then back to the vicinity of our hotel. We wondered around attempting to find some place to eat. We ended up eating at Marshall's Bar and Grill on L St. It was your typical neighborhood Italian restaurant. It was nothing to write home about. Very near the restaurant and Dr. Jemsek's office was a Trader Joe's grocery store. We had never been to one and we ended up going there twice on Sunday night. They have a very interesting business model which focuses local and smaller suppliers. They don't sell much in the way of brand name products and they definitely have a focus on healthier foods. </div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: left;"><br />
</div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: left;">Dr. Jemsek's office is at 2440 M St. NW in the Georgetown neighborhood. The building has a parking garage under it that is accessible from M St. Parking was $8 per hour. As we ended up being there for nearly 2 hours, the parking tab was $15. Another reason to stay across the river and use the subway. </div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: left;"><br />
</div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: left;">Anna and Lynette were the first patients of the day at Noon. Due to the transition that has taken place with the move of Dr. Jemsek's office from Fort Mill, SC to Washington, DC the office environment seemed a bit chaotic. We were surprised to see Phyllis at the receptionist's desk, but she explained to us that she was training her replacement and would not be staying in DC permanently. Anne Walch, the PA from Dr. Biddle's office in Asheville, who saw Anna on her first appointment in Fort Mill, was also in the office. While Dr. Jemsek was talking with us in the examination room, he left briefly go get someone to introduce to us. He came right back with his 10 year old son James. James had come to DC with his dad to provide some relief for Dr. Jemsek's wife back in Charlotte. James was busy with some school tutoring while he was at his dad's office. </div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: left;"><br />
</div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: left;">As usual, Dr. J changed up Anna and Lynette's protocols. Lynette is now on Omnicef, Rifabutin, and Minocin. The Rifabutin will be alternated on a weekly basis with Levaquin. Lynette's new schedule is 2 weeks on and 3 weeks off. Dr. J also prescribed Alinia for Lynette which is an anti-parasitic that is active only in the digestive system, and recommended nattokinase to be taken as a supplment. As I recall, he suggested this substance as an agent to help break down biofilms. Anna will also be on the same medicines, with the exception of Levaquin. Anna will be going to 1 week on and 2 weeks. Anna will not need to return for 6 months. Dr J. said he wanted to see Lynette back sooner.</div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: left;"><br />
</div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: left;">Dr. Jemsek seemed to be in pretty good spirits. We all know what he is going through with the illnesses of his daughter and wife and the transition of his practice. Whether we imagine it or not, it appears that Dr. Jemsek is a little worn down from all the struggles he is facing. His new staff seemed to be coming along well. The nurse that saw us that day, Karen Campbell, was wonderful and personable. She gave us hugs when we left. </div>brewfunkhttp://www.blogger.com/profile/07826217449507031566noreply@blogger.com0tag:blogger.com,1999:blog-8878863702038200909.post-72464801281083646042010-01-13T18:30:00.000-08:002010-01-14T03:59:56.828-08:00Happy New YearThe Holidays are over. Time to rejoice. I always lament the coming of Holiday season because it is too busy. I cannot come to terms with the time obligations invloved in this season. We pack all of the shopping, cooking, eating, giving, visiting into a one month period. It is a pleasure to see those we haven't seen for a year, and fun to give and receive gifts. But I think it would be more enjoyable if we could spread it through out the year. Call me Scrooge. <br />
<br />
My father recently celebrated his 73rd birthday. He is incredibly healthy and serves as my home remodeling consultant. I called him for his birthday and he told me about a visit to his house from a neighbor couple. The wife had recently experienced a significant and unexplained weight loss. She had no explanation for it.<br />
<br />
My father told her that my wife had suffered a significant weight loss preceded by a Lyme diagnosis. She confessed that she had experienced a recent tick attachment which was followed by a red ring around the bite site. <br />
<br />
I am a news junkie. When I was in college, living in campus housing, I had the newspaper delivered to my door daily. I had a class that required me to subscribe to the Christian Science Monitor and I thought that was cool. When I moved off campus I continued to subscribe to Columbia State newspaper. I currently subscribe to the weekly small town newspaper here in Clemmons where we live. I also subscribe to the daily paper from the nearest city, Winston-Salem. If I am sitting at a computer I have probably checked msnbc.com to see what the latest news is. When I am in the car I'm listening to NPR or local talk radio. I have an insatiable curiosity about the world. It is somewhat fulfilled by all of these media sources.<br />
<br />
I have known for years that Lyme disease is associated with a bullseye rash and arthritic symptoms. I had no idea about the havoc that this disease could wreak on your immune system and the neuroligcal effects it could have. Before Lynette became ill she had never heard of a bullseye rash. It is so apparent that there needs to be more awareness. <br />
<br />
We have our next appointment with Dr. J which will be towards the end of January. My dad's house is on the way, so we look forward to being able to visit with him. We are also hoping to be able to spend a "tourist" day in DC the day before the appointment.<br />
<br />
I have made a tradition of making a "mix tape" CD every year and giving it to friends and family for Christmas. This years disc was called Can Ya Dig It. It was a compilation of '70s Soul music. This is the music I grew up listening to in the car with my mom. Artists like The Spinners, Aretha Franklin, The Jackson 5, and Mavin Gaye. My favorite song on this year's CD is Midnight Train to Georgia by Gladys Knight and the Pips. There's a line in the song (gender inaccuracy excused) that describes my life lately. She sings:<br />
<br />
"I'd rather be in his world, than be without him in mine."<br />
<br />
So I'll be in her world. Lynette didn't have a choice. I did. It's OK. <br />
<br />
When the clock strikes midnight on New Year's Eve one tends to look back on the previous year. Generally it has either been a good year or a bad one. For our family 2009 will be remembered for very dark and trying times which will scar our memories for years to come. We look forward to continued progress back to a normal life. This one will be better.brewfunkhttp://www.blogger.com/profile/07826217449507031566noreply@blogger.com0tag:blogger.com,1999:blog-8878863702038200909.post-46769948715216979142009-12-23T09:50:00.000-08:002009-12-23T09:50:21.267-08:00'Twas the Night Before Drug Holiday‘Twas the night before drug Holiday, and although Mom was sick. <br />
Not a creature was threatening, not even a tick.<br />
<br />
The Children were bedside praying while they kneel. <br />
While their bellies were full from tonight’s Gluten Free meal.<br />
<br />
The drugstore had been called, to order more refills.<br />
For some of the prescription bottles had run out of pills.<br />
<br />
Mother in her rocking chair, her PICC line running. <br />
‘Twas the end of a cycle, antiobitics she’d be shunning.<br />
<br />
When out in the driveway a ruckus was heard.<br />
I looked out the window to see what had occurred.<br />
<br />
When what to my wondering eyes should I see <br />
Eight lovely nurses and our LLMD.<br />
<br />
He spoke with authority as he commanded his staff.<br />
And out from his mouth came with a jolly laugh.<br />
<br />
“Now Ringers! Now Doxy! Now Clinda and Mepron!<br />
On Ceftin! On Tiga! On Zithro and Merrem!”<br />
<br />
He was dressed for the occasion as he peered over his glasses<br />
At once he proclaimed his approach to the masses.<br />
<br />
“With pulses and holidays and combination therapies<br />
We’ll rid you of these symptoms and serious maladies”<br />
<br />
“Supplements next week, no drugs consumed. <br />
If you don’t watch your gluten, your gut will be doomed.<br />
<br />
“As for probiotics, they are important too.<br />
To help fight the damage that antibiotics can do.<br />
<br />
“We’ll knock out the Lyme, the Babs and the Bart.<br />
Believe in my tactics and take this to heart.<br />
<br />
“We’ll have you back walking and clear in the head<br />
Brain fog will be gone and the spirochetes dead.<br />
<br />
As he turned to drive off with all of his team,<br />
He looked back at us, his eyes all agleam.<br />
<br />
“May recovery be swift and without delay <br />
Here’s to your health, enjoy your drug holiday!brewfunkhttp://www.blogger.com/profile/07826217449507031566noreply@blogger.com4tag:blogger.com,1999:blog-8878863702038200909.post-17527034950602148452009-12-17T06:59:00.000-08:002009-12-17T18:12:26.958-08:00WonkWonk: a person preoccupied with arcane details or procedures in a specialized field; <br />
<br />
Lorraine Johnson is a tireless advocate for the Lyme community. She has both law and MBA degrees. Her writings on the issues of medicine and its ethical and legal aspects are prolific. Lorraine currently serves as the executive director of the California Lyme Disease Assn., as a member of the Board of Directors of International and Lyme Associated Diseases Society (ILADS), and as a member of the advisory board of the national Lyme Disease Association.<br />
<br />
Lorraine maintains a great blog that presents logical arguments against the ways of the IDSA and the uneducated medical community. The things she writes just make so much sense. <br />
<br />
<a href="http://www.lymedisease.org/news/lymepolicywonk">http://www.lymedisease.org/news/lymepolicywonk</a><br />
<br />
A recent post compared the struggles of breast cancer sufferers 30 or 40 years ago to Lyme disease patients today. Breast cancer was stigmatized and not talked about. Women had to pass legislation in several states to be able to choose their course of treatment. Drs. were afraid to perform lumpectomies for fear of losing their licenses. <br />
<br />
<a href="http://www.lymedisease.org/news/lymepolicywonk/284.html">http://www.lymedisease.org/news/lymepolicywonk/284.html</a><br />
<br />
Lynette had a fun time with Flagyl last weekend. This is the drug that she takes morning and night the last 2 days of each antibiotic cycle. It targets the borrelia that have transformed themselves into a cyst form. This state of borrelia is not susceptible to standard antibiotics. <br />
<br />
Lynette has been taking this drug as long as she has been under the care of Dr. J. A day or two after she takes Flagyl, she sometimes experiences episodes of depression that last for a day or two. Other times she has felt no ill effects. She took it at the end of last week. Sunday and Monday she had PMS and it wasn't even close to that time of the month. Then it was over. <br />
<br />
Anna's volley ball team won the conference championship and now it's on to basketball. Anna is in 7th grade and she is playing on the junior varsity team. Since her school's enrollment stops at 8th grade this makes her one of the leaders on her team. She has shown major improvement in her skills over last year. But most importantly, Anna is reporting that the pain in her ankles and feet has lessened. We've noticed that she's had less headaches and she hasn't complained about her sleep patterns lately. It sounds like Anna's treatment is working well. She should never have to experience what Lynette went through.brewfunkhttp://www.blogger.com/profile/07826217449507031566noreply@blogger.com0tag:blogger.com,1999:blog-8878863702038200909.post-19738083662803174232009-12-07T18:00:00.000-08:002009-12-07T18:00:59.630-08:00Don't Be LateLynette's tardiness has always been an annoyance to me. She thinks that she would be wasting the amount of time between when she arrived and when she was supposed to be there. I think it's an inconvenience to every one of the the people that she is meeting when she is late. <br />
<br />
She got this message from a fortune cookie one night:<br />
<br />
"People who are late are often happier than those who have to wait for them." <br />
<br />
When Lynette was really sick she was the one who had the best of attitudes while the rest of us fretted about her condition. I guess we were waiting for Lynette and she was handling it better than the rest of us. <br />
<br />
Lynette returned to work today. She will be working 25 hours a week for the next month or two. Her pod was decorated with lyme green streamers. There were other decorations and treats to celebrate her return. <br />
<br />
Lynette is not cured yet, but she is a long way towards recovery. She still has balance and strength issues. The numbness in her hand and feet persists. She notices some affects from the oral antibiotics that she's on. But she has come a long way. <br />
<br />
Even if she's late.brewfunkhttp://www.blogger.com/profile/07826217449507031566noreply@blogger.com1tag:blogger.com,1999:blog-8878863702038200909.post-43981902607566885312009-11-26T15:18:00.000-08:002009-11-26T15:19:29.607-08:00Thanks for...Thanks for continued improvement in my wife's health. <br />
<br />
Thanks for making me cook all day today. I had so much fun.<br />
<br />
Thanks for the people who helped clean up my mess. <br />
<br />
Thanks for our kids, parents and siblings being able to join us for dinner today. <br />
<br />
Thanks for people who fight for the truth even when biased and uneducated people tell them they are wrong. <br />
<br />
Thanks for doctors who are willing to put their reputation on the line to treat patients who have nowhere else to go. <br />
<br />
<br />
brewfunkhttp://www.blogger.com/profile/07826217449507031566noreply@blogger.com1tag:blogger.com,1999:blog-8878863702038200909.post-84412708999594052422009-11-25T06:38:00.000-08:002009-11-25T06:38:19.038-08:00Gluten TuesdayOn the very first day that we saw Dr. J, my wonderful mother-in-law Beverly was extoling the virtues of my culinary prowess to Dr. J. She was describing some random pizza that I had made while she was staying with us and helping Lynette. Dr. J immediately interjected with his warnings about gluten in the diet. That was the beginning of Lynette's gluten restricted diet. <br />
<br />
It's been over 6 months now. We have not seen any harm or help from restricting Lynette's gluten intake. At first she ate no gluten. Then once in a while she would have something with a slight amount of gluten, like gravy thickened with wheat flour. Then over the course of a week would have something like breaded seafood once.<br />
<br />
We have family standards that we like to eat that contain gluten. The gluten does not seem to be causing any issues for Lynette, so I have recently implemented Gluten Tuesday. Two weeks ago we had quesadillas. Last week we had muffalettas. This Tuesday it was home grilled hamburgers. <br />
<br />
Of course we aren't going to go overboard, but I see no harm in a little gluten if it is not causing Lynette any issues. brewfunkhttp://www.blogger.com/profile/07826217449507031566noreply@blogger.com2tag:blogger.com,1999:blog-8878863702038200909.post-74919464893223727292009-11-19T18:57:00.000-08:002009-11-20T05:29:45.944-08:00Do you have health insurance?We have the standard corporate employer provided health insurance. Lynette's employer is the plan subscriber, a coverage which has remained in place during her illness. Over the years we have been happy with our coverage, paying our copayments and deductibles for office visits and minor medical procedures. Before I changed jobs, I used to carry our health insurance. I was surprised to find out at the annual reenrollment meeting that my company was paying twice the monthly premium on my behalf that I was. My medical insurance premium per month was nearly $1000 for my family, including mine and my company's contribution. I was surprised to learn how costly it was for my employer to provide me with health insurance.<br />
<br />
I'm sure it's not a surprise to most of you reading this that we have had a recent increase in our medical expenditures. If you have health insurance, you probably feel some security in having this coverage. It's comforting to know that when you go to the doctor or take your child the doctor that your visit will be covered by your health insurance. <br />
<br />
Lynette received a detailed statement of charges each time we went to see Dr. J. Most of her visits over the summer included charges for a generous supply of pricey IV antibiotics. Since Dr. J was out of network, all insurance claims had to be file by the patient. Lynette gathered up the supporting documentation, filled out the necessary forms and mailed the claims off to Cigna. When the first claim came back underpaid, Lynette realized that they had paid on the unit price for her antibiotics and not on the extended price.<br />
<br />
Lynette contacted the insurance company to let them know of their error. We figured this was an isolated event and it would be quickly corrected. The next time Lynette made a similar claim, the same problem was encountered. Lynette contacted them once again to let them know that they had incorrectly processed the claim. The next time Lynette had a similar claim to post, she took special care to annotate the supporting documentation to help the claims processor correctly encode Lynette's claim. Once again they filed the claim based on the unit price instead of the extended price. Even with extra direction, they still filed the claim based on the unit price rather than the extended price. Lynette filed more appeals, and today we have finally received a benefit check for these claims. <br />
<br />
The cost of Lynette's Lyme disease treatment is approaching $50,000. At this point I feel somewhat happy that our insurance has covered 60% percent of this cost. We figured the insurance benefit would stop at one month of IV antibiotic therapy. But they have not denied any of the claims once we let them know where the right numbers were. The level of the benefit has been higher than what we expected.<br />
<br />
The Academy of Motion Picture Arts and Sciences has pared down their choices of documentary of the year to 15 movies. One of those movies is <a href="http://www.underourskin.com/watch.html">Under Our Skin</a>. This is a movie about Lyme disease and the political and medical controversy that surrounds it. I surely don't expect Under Our Skin to win the Oscar for best documentary, but I am so excited to think of the attention that would be drawn to the Lyme plight if Under Our Skin was one of the 5 nominees for best documentary. <br />
<br />
This is the part where I usually write about Lynette. She's not all the way better, but she's doing pretty damn well.brewfunkhttp://www.blogger.com/profile/07826217449507031566noreply@blogger.com0tag:blogger.com,1999:blog-8878863702038200909.post-6470449797188746782009-11-12T17:58:00.000-08:002009-11-13T05:27:10.833-08:00Should I Stay or Should I GoThere's a vibrant and active community of people affected by Lyme disease. Of course the internet is the best way to interact with these folks. Lynette and I both belong to a couple of social networks targeted to people who's lives have been touched by this disease. <br />
<br />
These social networks are a great source of support and information. Although each member has a different story to tell, you start to see that you have things in common with many of them. They have similar symptoms. They are on the same medicines. They see the same doctors. <br />
<br />
No doubt there are a lot of stories of dispair to be witnessed. There are patients who have been sick for years but just recently diagnosed. There are people who are sick and have lost their job and their income and are left alone and sick to fend for themselves. There are the typical stories of denial by the medical community. There are patients who have been aggressively treated and have made no progress. <br />
<br />
Jordan Fischer Smith, the forest ranger who is one of the Lyme sufferers who's illness is chronicled in the Lyme documetary Under Our Skin said on camera that he did not start to feel well until his 3rd year of treatment. Noted Lyme practitioner Joseph Burrascano endured treatment of his Lyme disease that lasted for more than 3 years. <br />
<br />
The worst of Lynette's symptoms came on after her sympathetic OB-Gyn wrote her a prescription for doxycycline. Lynette's reaction to this medicine was our confirmation that she was suffering from Lyme disease. Lynette was forced to use a walker and wheel chair to get around due to the herx that she suffered from this treatment. Lynette's formal treatment for her Lyme disease started in the middle of February. Although progress seemed slow to us by the beginning of May Lynette was walking unassisted. <br />
<br />
It is a tendency among the members of the Lyme social networks to leave these communities when the affects of their disease diminish. As Lynette starts to return to a normal life, I find myself feeling like I too could draw away from this community. But I do still want to be involved. There is a lot of progress to be made in diagnosing Lyme disease, in getting proper and adequate treatment, and in recognition of how serious of a problem this illness is. <br />
<br />
Lynette and I are going to the wedding tomorrow night of one of our oldest daughter's childhood friends. The other night Lynette was going through her wardrobe trying to find something to wear to the wedding that would be kind to her diminished stature. She was also trying on shoes that she could wear and not fall over herself. Lynette says she still has to concentrate when walking in tricky shoes. <br />
<br />
Lynette has set a date for her return to work. She hopes to return to part time duty on December 7th. Her disability insurance prohibits her from returning to work full time. I suppose they want to avoid a relapse. She will be on part time for a couple of months before returning to full time. This would put her on schedule to return to full time almost exactly one year after having to go on disability. <br />
<br />
As it stands now, it looks like we will be visiting Dr. J again in mid January. After Lynette's phone consult with Dr. J last Monday, she is now on oral antibiotics on a M, W, F, two weeks on, two weeks off schedule. Lynette had not had any antibiotics for 3 weeks following the completion of her IV therapy. She did notice some minor herx reaction upon starting the orals. She felt some effects in her hands and feet the first couple of days that she started back on the oral antibiotics. <br />
<br />
Lynette is getting better and I intend to stick around.brewfunkhttp://www.blogger.com/profile/07826217449507031566noreply@blogger.com3tag:blogger.com,1999:blog-8878863702038200909.post-74283379211675940082009-11-04T17:12:00.000-08:002009-11-04T18:48:39.955-08:00Top 10 reasons I like office visits better than phone consultsLynette's PICC line was removed today. I told her I expected to see her raking leaves this weekend! <br />
<br />
I pursued getting the line pulled earlier, but I couldn't get any of the smart people to support me. Lynette's doctor sent us more supplies to keep the line going. Lynette had a phone consult with her doctor on Monday and he approved having the line pulled. Several phone calls were made and appointments set up and today the line was pulled. Lynette called me immediately afterward. She was so energized. <br />
<br />
The phone consult was actually more expensive than an office visit. But an office visit would be hard for two reasons: 1) his office isn't open yet, and we haven't heard a definite date. 2) it would cost us at least $150 in travel expenses to go see him. I convinced Lynette to do the phone consult and have the PICC line pulled locally where it could be done by a practioner who is in our insurance network and 100% covered. <br />
<br />
Based on her experiences, Lynette has made the following commentary about office visits versus phone consults:<br />
(names changed to protect the warriors)<br />
<br />
Top 10 reasons I like office visits better than phone consults<br />
<br />
10.Get to file them with our insurance<br />
9. Cost 3 times less out of pocket <br />
8. Get to give out hugs<br />
7. Have interesting conversations in the waiting room<br />
6. Get to see friendly office staff<br />
5. Shaun get's out of work<br />
4. Get hand written prescriptions that CVS can't translate <br />
3. Get to see Nurse Lisa <br />
2. Get colorful chart from famed artist Dr. <br />
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#1 reason I prefer office visits -<br />
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1. Get to go to Six Pence Pub after visitbrewfunkhttp://www.blogger.com/profile/07826217449507031566noreply@blogger.com2tag:blogger.com,1999:blog-8878863702038200909.post-60976968146722208422009-10-21T17:16:00.000-07:002009-10-21T18:09:41.062-07:00PSAI'm sure you've noticed that to the right of where you are reading right now there is a list of other blogs entitiled 'My Blog List'. The list is sorted according to the last time the blog was updated. So if you are waiting for my lazy ass to post a new entry you can read the blogs in 'My Blog List'. There are some interesting and compelling stories being told. I removed a few and added a new one tonight. Check it out!brewfunkhttp://www.blogger.com/profile/07826217449507031566noreply@blogger.com0tag:blogger.com,1999:blog-8878863702038200909.post-86261592903118187872009-10-20T18:12:00.000-07:002009-10-20T18:22:18.281-07:00Word on the StreetWord on the street is that the New Jersey Senate is proposing legislation that categorizes Lyme disease as a "Neuroendocrine Immune Disorder" (NEID). To the Lyme community this means that their disease is being classified as an autoimmune disorder. Such disorders are supposedly the result of an immune system gone awry, rather than its response to some foreign body. This position plays right into the hands of the Infectious Diseases Society of America (IDSA) which says there is no infectious agent involved in what they call "post Lyme syndrome". <br />
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The IDSA is the author of the accepted Lyme disease treatment guidelines. Unfortunately these guidelines are out of touch with the current research. The guidelines are authored by panel members who have financial interests in products involving Lyme disease testing and vaccines. This presents a direct conflict of interest. The IDSA's denial of the existence of chronic Lyme disease results in denial of treatment to many people who are infected with Lyme disease. <br />
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I went to check out the language of the legislation proposed in the New Jersey Senate. It did not seem nearly as exclusive as I had expected. The point of the bill is to establish a research center to study diseases classified as NEIDs. These include Chronic Fatigue Syndrome, Fibromyalgia, Gulf War Syndrome, Lyme Disease, Multiple Chemical Sensitivity and other environmental illnesses. The language in the bill states that the mechanisms of transmission of NEIDs include parasite borne infection. It even mentions the extended length of time that may lapse before getting a Lyme disease diagnosis. The bill supports research to determine the etiology of these conditions. I don't really see the harm in this legislation. You can read it <a href="http://www.lymediseaseassociation.org/HR741/SenateNEIDResolution.pdf">here</a> yourself. Maybe one of the readers can explain the uproar. <br />
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Lynette finished her IV antibiotic therapy on Friday. I took pictures. As you may recall, one of the drugs in her last cycle made her very nauseous. Lynette had a major battle with nausea through the entire cycle. Even though she had little appetite, Lynette found that she felt better with food on her stomach. While there wasn't much she wanted to eat, Lynette had cravings like a pregnant woman. Bean dip. Sushi. Steak and Cheese (hold the bread). She also developed aversions to many foods and drinks that she would normally like. She didn't even want to drink water or swallow pills. She skipped about 85% of her supplements and other prescribed medicines during this last cycle. <br />
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Today? We talked on the phone this afternoon about supper tonight. She went to the grocery store and picked up some items for our meal. She took chicken out of the freezer to defrost. When I got home from work she had already prepped one dish. She chased me out of the kitchen to go change my clothes and start the grill. I love a forceful woman!<br />
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Lynette is infusing a liter of lactated ringers daily for the week following the completion of her IV antibiotic therapy. After that her PICC line will require a daily saline and heparin flush and a weekly dressing change. Due the transition of Dr. J's practice, they are not available to see Lynette until the second week in November. It is at this time that they said they could remove the PICC line.<br />
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We have enough supplies on hand to maintain the line until November 2. We are pursuing options to have the PICC line removed locally sooner. There's no way we will get up to the new JSC before we run out of supplies. We also see no reasoning for maintaining this line, considering the added risk of contamination that comes with the frequent flushes and dressing changes. <br />
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I talked to the staff at JSC and they suggested that we wait a week or so to make sure that Lynette is really feeling well. At that time they said it would be OK to have it pulled locally. I also talked to Lynette's PCP and they said they could get us an appointment to have it pulled.brewfunkhttp://www.blogger.com/profile/07826217449507031566noreply@blogger.com3tag:blogger.com,1999:blog-8878863702038200909.post-46742750367210563562009-10-01T19:12:00.000-07:002009-10-02T06:32:03.505-07:00The Big News From North CarolinaState officials in North Carolina are now saying that Lyme disease can be contracted in North Carolina. The conclusion comes from four cases of Lyme infected patients who never left their home counties. Here's a great <a href="http://www.newsobserver.com/news/health_science/story/120289.html">article</a> in today's Raleigh News and Observer about the change in policy. <br />
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This is definitely a step in the right direction. However this news has managed to boil up a lot of anger in me. Why has it taken this long? The population of our state is approaching 10,000,000. The CDC has collected reports of North Carolina residents being infected with Lyme disease. While the numbers are low, it is estimated that the CDC is missing as many as 80% or 90% of actual cases. How can all of these people test positive for Lyme disease if there are no ticks carrying Lyme disease in our state? <br />
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The wife of a man that I work with was going down the path of a breast cancer diagnosis. Her tests were negative and she recalled a recent tick attachment. Her doctor tested her for Lyme disease and she was positive. She was bitten in North Carolina. A woman that I know who lives in Kernersville was bitten several years ago near her home. She was treated with a short course of antibiotics and was well for a few years before symptoms returned. She was bitten in North Carolina. This same woman was braiding her daughter's hair and saw an embedded tick in her daughter's scalp. A bullseye rash developed at the site of the bite. The child had also been bitten near her home in NORTH CAROLINA.<br />
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The Department of Defense did a study of ticks removed from service members at various military installations mostly in the Eastern United States. The ticks were tested for Lyme disease. The highest rate of tick infection was at the Marine base Camp Lejuene. Camp Lejeune is in North Carolina. <br />
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One of the justifications that officials sight in denying that Lyme exists in our state, refers to a study done in Georgia that analyzed ticks found on reptiles. In the case of one species of lizard, it was found that there was an enzyme in the lizard which was effective at cleansing their bloodstream of the Lyme bacteria. Supposedly this eliminated the risk of infection for humans. However, another study done in South Carolina found that another lizard species, that had ticks attached, had a 50% infection rate with borrelia. <br />
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One of the reasons that a Lyme diagnosis is often dismissed is that the tests are so innaccurate. Unfortunately many Lyme infected patients test negative with the current tests. Doctors in North Carolina see these negative tests as an absolute negative. Lyme tests don't test for the presence of the Lyme bacteria. They test for your body's response to it's presence. The Lyme bacteria employs several tactics to evade the immune system. This minimizes the body's immune response. This <a href="http://www.willitsnews.com/ci_13453460">article</a> is the most concise one that I've found that talks about the various evasive tactics of borrelia.<br />
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Tom Grier is a Lyme patient with an education in microbology. Although he addresses very scientific information, he has a way of writing about it that is more accessible to the layman. For a little more detail of some of Lyme's evasive tactics as well as more indepth information about Lyme disease that bucks IDSA ideology, check it this great <a href="http://www.lymeneteurope.org/info/the-complexities-of-lyme-disease">article</a>.<br />
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I'm hoping that this news will change the ways of physicians like Dr. Robert Kelly of Maplewood Family Practice in Winston-Salem and Dr. Melanie Adams of Forsyth Pediatrics in Winston-Salem and Dr. Michael Blocker in Burlington. Dr. Kelly saw Lynette and was sure that Lyme is not an issue in North Carolina. Dr. Adams and Dr. Blocker were both aware of Anna's positive Lyme test and dismissed it. Dr. Adams was glad that we don't have to worry about Lyme in North Carolina. <br />
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There is still a lot of pushback from the IDSA. They are the ones responsible for the heavy handed tactics that enforce doctor's denials of Lyme and it's chronic form. There is no doubt that the IDSA is behind the effort to shutdown doctors who treat Lyme aggressively including Dr. Joseph Burrascano in NY, Dr. Ernie Murakami in British Columbia, and Dr.Joseph Jemsek in South Carolina, who is in the process of relocating his practice for the second time in 3 years. We have a long way to go. But we are moving in the right direction.brewfunkhttp://www.blogger.com/profile/07826217449507031566noreply@blogger.com1