Gluten-Free

Lyme Disease Journal #Five *Scoreboard Lyme-One, Me-Still Standing*

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This is a repost from 2014 discussing a Gluten-Free diet. The information is an overview and may help if you’ve been told to start your Gluten-Free journey.  I hope this answers some of your questions and starts you on your way to less inflammation in your life.  Have a great day and always thank you for reading, I appreciate you. I love reading your comments so keep them coming. Melinda  This week I want to give a brief overview on Gluten Free Diet and Epstein Barr Virus. Both where the top searches in last weeks post. I hope the information is helpful. The CDC is a great place to get up to date information. Have a great weekend. 🙂   M Gluten Free What does it mean? My doctor follows The Mayo Clinic, Gluten-free diet: What’s allowed, what’s not. All information taken from The Mayo Clinic outline. A gluten-free diet is a diet that excludes the protein gluten. Gluten is found in grains such as wheat, barley, rye and triticale (a cross between wheat and rye). Gluten causes inflammation in the small intestines. Switching to a gluten-free diet is a big change at first, it takes some getting used to. Many specialty grocery stores sell gluten-free foods. We shop at Whole Foods and have found a large selection of gluten-free products, including brownies. Here are some surprises I discovered. My husband eats many gluten-free products but not exclusively. The Mayo Clinic strongly warns […]

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Chronic Lyme Disease

Powassan Virus worse than Lyme Disease?

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I am walking after three years spent in bed, how could anything be worse than Lyme Disease. I’ve lost three years of my life screaming in pain, narcotics, nine months of twice a day IV Infusion Treatments. The conflict in my marriage is understandable but not erased. I can not stress enough how important Tick Borne illnesses are, they can kill. If you already have a compromised immune system, your starting behind the curve. I’ve talked to many at WordPress with Chronic Lyme, many of them spent 10-15 years before diagnosis. Think of the pain and isolation of our fellow Bloggers. People have said we don’t have ticks, for one Lyme and Powassan Disease is transmitted by many sources other than ticks, mosquitos, sand flies, are just a few culprits. Thick of it this way, in the wild animals of all types of animals die, many pest visit the buffet. Now imagine how many pest fly to a hump of dung! Many more than we know and the world is bigger than or neighborhood. The flying pest target is blood, they have to eat. They don’t discriminate on were to go for lunch. The ticks who carry Tick Borne illnesses are smaller than a pencil lead, try to find that while doing a tick check, you will not see them. Before Chronic Lyme I refused to use DEET, now I won’t step out of my house without. At least 20% […]

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Chronic Lyme Disease

Lyme Update 18 *Chronic Illness & Controlled Substances*

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The days get lonely, when your symptoms reach the disability stage. Times can get lonely, ask friend or create a circle of like-minded friends who you can talk honestly with.  Keep Learning. If you’re concerned about addiction, talk to Doctor as you decide the treatment best for you.One complete withdraw on Xanax and two days without Temazepam. This is a monthly struggle. The CDC is putting a tighter grip on Control  Substance management is critical if you suffer from lack of memory. Going thru withdraw in August and not clear how, I had to understand how this happened. I get anxiety when an addictive drug is running low. I’m addicted to are Xanax, Dexedrine, Tramadol, and Morphine Patches. The Xanax and Dexedrine are for mental illness the others are for Lyme Protocol. The ongoing frustration is with myself, CVS and my husband. It is difficult to take care of a Chronically Ill person. My husband has to work, do every task at home, grocery shopping, everything.  That’s a big understatement. I have severe dysfunction in memory & cognitive ability. CVS had new script for increased dosage of four a day, first refill my Doctor called increased to 3 daily, a week later he increased the dosage to 4X. If CVS would have filled each new increased dosage I could skipped the experience of 100% withdraw. Part of my Lyme Protocol is Temazepam, a restless leg medicine. If you can’t sleep you’re […]

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Advocacy

Learning from Chronic Illness *Tid Bits, Falling and Learning To Fly*

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I dedicate this post to the chronically ill, newly diagnosed and their caregivers. You are the Survivors. It took three painful years to learn I had Chronic Lyme Disease. I’ve had bumps over the years, nothing like Lyme. I’m totally dependent on my husband. Every week he takes countless hours off work. There’s IV Therapy before and after work. Day to-day monitoring the catheter with weekly bandage changes. Out of state doctor appointments once a month, insure medicines are taken properly, on time and everything you can think of. I didn’t know what life would teach me. Boy have I learned and want to share with you. The ongoing guilt is a challenge for me.Guilt for not getting out of bed, doing laundry, on and on. I had no concept of how humiliating daily life can get. I march on. At 52, I wear Kotex for daily spills. The agony of not taking extra Kotex on long flight. I made a list to complete before treatment. HA! It’s hard to prepare for everything when an illness effects everyone different. The post is female oriented, I can’t speak for men. Use your imagination. Some suggestions will make you laugh and others grateful to know. Here are a few surprises. The list is task you may want to consider. Any Dental work Mammogram Gynecologist By wardrobe essentials, one size larger, possibly add another half-size or larger. Shoes become a nightmare, one day your sneakers fit, next day […]

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Advocacy

Brief Lyme Update #14 *Lyme-tough Me-still have fight in me*

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I had surgery for a Port, it is required for IV Treatment. I choose IV Therapy because it has a record of healing faster. I can tell already a Port for 9-12 months is no merry-go-round. The surgical area’s not bad. I fell breaking my arm or it was run over by a monster truck before the trip. The procedure is short, it takes longer to prep than do surgery. A catheter goes into small section of heart, then is brought thru skin to take medicine thru tubing hanging down with blue top. Doctors do the procedure differently.The bandaging stays the entire time and is changed once a week. This is my basic regimen for those who don’t understand the horrible effects of Lyme IV Therapy. In a future post, I’ll talk about cost of treatment. If you would like to know more leave me a comment, or read all 13 of my Lyme post.  All ticks can carry Lyme, ticks the size of sesame seed to seed of rice. P.S. mosquitoes and flies can also carry Lyme. The best revenge is sunscreen with 20% DEET. If out hiking in pants tuck into socks. Wear light-colored clothes and search like crazy once home, think of a tick that small in your hair. Basic Regime  Five Supplements (everyday) Seven RX pills  (everyday) 10mg Morphine patch (one a week) M,W& F  Antibiotic Drip 2 times day with 2 shots Heparin All other […]

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Lyme

How Does Being Blind Change Your Life ?

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Several months ago my vision changed drastically. I could barely read, saw things not there, my floaters looked like worms. My Lyme doctor looked and saw the worms and one of my Iris’s changed colors. Go see eye doctor she advised. It was time for new glasses and annual test. I left the eye exam shocked! I had lost vision in each eyes which did not look like glaucoma. The worms were there, one close to retina. He explained the test showing the print out at what it looked like. “I’ve never seen anything like this” Not what I expected to hear. Saying it looked like my optic nerve. He could not right a RX for glasses, I didn’t understand. He refered me to a Nuero-Opthomologist. Over two appointments I had 10+ test. The last test hurt, I had wires in my eyes for 30 minutes. A current went thru one tucked in under my eyelids. I don’t care for lidocaine in my eyes. I always try to get information from techs. This time tried different approach, asking what each machine tested for and what would the results tell the doctor. I asked about the test with wires, would results identify glaucoma, the machine wasn’t used for Glaucoma. He sends test to expert for their perspective, means no answers until appointment on 10/20/15.   Eye problems are mentioned in the Lyme Books I’ve read. I didn’t connect Lyme with eye problems. […]

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Tick Borne Illnesses

Tick Transmitted Illness Powassan Virus…10% cases are fatal

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INFORMATION FROM CENTER OF DISEASE CONTROL ON POWASSAN VIRUS  Symptoms Many people who become infected with Powassan (POW) virus do not develop any symptoms. The incubation period (time from tick bite to onset of illness) ranges from about 1 week to 1 month. POW virus can infect the central nervous system and cause encephalitis (inflammation of the brain) and meningitis (inflammation of the membranes that surround the brain and spinal cord). Symptoms can include fever, headache, vomiting, weakness, confusion, loss of coördination, speech difficulties, and seizures Approximately half of survivors have permanent neurological symptoms, such as recurrent headaches, muscle wasting and memory problems. Approximately 10% of POW Virus encephalitis cases are fatal. Treatment There are no vaccines or medications to treat or prevent Powassan Virus infection. If you think you or a family member may have POW Virus disease, see your health care provider for evaluation and diagnosis. Persons with severe POW illnesses often need to be hospitalized. Treatment may include respiratory support, intravenous fluids, and medications to reduce swelling in the brain. What is the treatment for Powassan Virus disease? There is no specific medicine to cure or treat POW virus disease. Treatment for severe illnesses may include hospitalization, respiratory support, and intravenous fluids. How can I reduce chance of getting infected with Powassan Virus? The best way to prevent POW virus disease is by protecting yourself from tick bites. There is no vaccine against POW virus. Avoid contact with ticks by […]

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Lyme

What is on your Bucket List?

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I had a small Bucket List in my head for years, more detailed one on my computer, this week I jumped head first in the deep end. I even added a tab on blog for others to see. Please share, I love hearing your goals. We can support each other thru the storm. The Lyme Disease has taken a toll […]

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Lyme

Lyme Journal Entry Ten ** Lyme-Winning Me-Tugging the Trophy Back **

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I want to thank heatherfightslyme.wordpress.com for posting this video. She suffers from Chronic Lyme, check out the wealth of knowledge on her site. While fighting our own battle we can forget children and teens suffer from Lyme Disease. This beautifully sad video shows the struggle to find answers from a teenagers eyes. I feel her pain, want to hug her and make everything okay. We know it’s not that easy, hugs and understanding is always appreciated.  XO Warrior   Challenges this week: Exhausted, waking up exhausted. Not waking up by 9:30AM throws the days pills off schedule, especially the days I take shots. I start the day with multiple probiotics which need at least thirty minutes before starting the meds or eating. It feels like the anti malaria and high-powered antibiotics are eating my stomach. The gastro pain along with existing gastro issues make for an unpleasant experience. I wasn’t eating enough at breakfast. I tried eating a 1 1/2 cups of cereal and my esophagus ulcer was smiling. Slept most of four days and didn’t take any of my medication. I feel better but know my body requires help to fight this virus. The backlash of not taking my everyday medications has repercussions. I’m addicted to stimulate drugs taken for Bipolar Depression. Not taking them properly caused a huge roller coaster ride. If I take the drugs to late in the day, I’m up until 3:00AM, which keeps the cycle going. […]

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Lyme

Can Anyone Tell Me What Day It Is? **Yosemite National Park Here We Come**

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      I’ve been in the house so long there’s no reason to keep up with the day of week. Today is a perfect example, Throw Back Thursday is on Wednesday. I want to cry and laugh at the same time. The neurological effects of Lyme Disease sucks. In the Chronic phase the virus can set up house in the brain causing neurological damage. To remain as positive as possible I don’t focus on the effect to my brain. There is no way to know if the damage is permanent or not. One side effect is memory loss, like walking to the kitchen and not remembering why. It’s annoying and a reminder you have a virus boring thru your brain. I choose not to focus on the what or why even with constant reminders. I am not at the wheel and trust God to get me to the other side.I’m on a long journey that will give plenty chances to laugh, laugh with me, not at me. Overlook the missing words in a post, thanking you for stopping by more than once and Throw Back Thursday on Wednesday. Life is too short to worry about the little things. Let’s laugh, then focus on how we can help someone and have our collective voice heard. Sending a heart-felt thanks and Texas size hug to you. M  

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Lyme

Lyme Journal Entry Six **Kicked Around But Never Down**

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God blessed me with the ability to feel empathy. He also filled my heart with sunshine. Today my husband participated in the Ice Bucket Challenge. My heart shines as I watch this challenge cross the globe. If we look, there is someone suffering more than ourselves. I work hard to keep in mind on the tough days.  M I’ve had a cold for a couple of days, germs rode in on husbands back. Thank you for the prayers and kind words, you lift me up. I have a positive outlook, no pity party here. Lyme Disease may kick me around but never down. A special shout out to my Twin in Germany, she keeps me rolling in laughter with vomit stories. You had to be there. This is a list of probiotics, supplements and shots taken in preparation for my antibiotic treatment. My next appointment is 9/17/14, I’m hopeful he will start the antibiotics. Supplements Magnesium Malate 1,250mg  1 daily Omega 3,2126mg  1 daily Alpha Lipoic Acid 600mg  1 daily Multi Vitamin 1 daily Acetyl L-Carnitine 500mg  1 daily Reservatrol 150mg  1 daily B12 Shot three times a week  Methylocobalamine 25mg/ml injection 1cc 3 x week Probiotics 2 pills in AM One liquid probiotic packet daily In an effort to improve overall health, I starting drinking all natural beverages. I discovered the Suja Life brand, they are certified organic by CCOF. The drinks are cold-pressed, organic, no growth hormones, all […]

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Lyme

Lyme Disease Journal Entry Five **Scoreboard Lyme-One Me-Still Standing**

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This week I want to give a brief overview on Gluten Free Diet and Epstein Barr Virus. Both where the top searches in last weeks post. I hope the information is helpful. The CDC is a great place to get up to date information. Have a great weekend. 🙂   M Gluten Free What does it mean? My doctor follows The Mayo Clinic, Gluten-free diet: What’s allowed, what’s not. All information taken from The Mayo Clinic outline. A gluten-free diet is a diet that excludes the protein gluten. Gluten is found in grains such as wheat, barley, rye and triticale (a cross between wheat and rye). Gluten causes inflammation in the small intestines. Switching to a gluten-free diet is a big change at first, it takes some getting used to. Many specialty grocery stores sell gluten-free foods. We shop at Whole Foods and have found a large selection of gluten-free products, including brownies. Here are some surprises I discovered. My husband eats many gluten-free products but not exclusively. The Mayo Clinic strongly warns to watch for cross contamination. An example is if one is eating gluten-free bread and the other is not, the toaster could cause cross contamination. Another contamination point is using the same utensils to cook gluten-free and non gluten-free. Yes, it is that detailed. Be careful with grains such as oats which can get contaminated with wheat during the growing and processing. I treated myself to ham lunch meat and cheese last […]

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Lyme

Lyme Disease Journal Entry Four ** First Back Slapping Turning Point**

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This week fatigue had a hold on me. A task requiring little effort takes twice as long. The extra effort is difficult for my multi tasking mind. Waiting on test results added to the stress. The doctor is making me wait until Sept. 19th to discuss the results. He gave me a nugget yesterday. I have Lyme, the co-infection Epstein Barr Virus and low Folic Acid. Requiring 2 new RX’s, for a total of 39 pills per day and 3 shots per week. The doctor surprised me with the Folic Acid RX, the red blood cell count was low. My grandmother could put all meds and supplements in one hand, throw them in mouth and swallow at one time. I am the opposite, one pill at a time shoved to back of throat, taking meds is a task. I’m not my best while being in limbo. I can hear gramps telling me, if you learn to enjoy reading , it will teach you patience. Mostly true. If you have Lyme Disease a great book is The Lyme Disease Solution. My doctor uses as a reference guide. It’s spells out the two schools of thought on Lyme treatment. What a Lyme Literate doctor means and why it’s important to seek this type of doctor. The life cycle of Lyme and why it’s difficult to diagnosis. The different paths doctors may take to heal you, this is very detailed down to the names of […]

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Fun

Eric Clapton and Steve Winwood Jam to Presence of the Lord **Live from Crossroads**

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I haven’t gone off the deep edge or forgotten what day it is. This song is the most beautiful rock song about finding God. This is dedicated to my friend/followers. Thank you for the kind words of support, prayers and overall positive thoughts. It would not be right if I didn’t mention EC is the master guitar rocker. The Rock Star in my head plays like my guitar idol. Have a great weekend. 🙂  M

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Lyme

Lyme Journal Update: Entry Two

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I have learned several lessons since the last journal entry.  A word of caution. For those who enjoy the outdoors anywhere in the US, Canada, Germany and  parts of England, please educate yourself on Lyme Disease. If detected early doctors can usually treat with a short round of antibiotics. It is hard to think a tick the size of a […]

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Caregiver

Critical Follow Up Information To Lyme and Other Tick Borne Illnesses Post

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Update on Lyme post. As you read about Lyme you will hear about co-infections. When a tick bites you every infection its carrying transfers to you. Another type of co-infection is from the virus moving thru your body. If the virus makes its way to your organs including the heart and brain. The menacing virus causes damage inside the body other than Lyme. The co-infections can get extremely painful. I hope you will seek out the more information to get the true horrifying story. Education may save your life or someone you love.      Warrior Here are several great resources to learn in-depth information on Lyme and Tick Borne Illnesses.  On YouTube: Interview with Daryl Hall of Hall and Oats Dr. Horowitz: Lyme Disease & Chronic Illnesses  ( Dr. Horowitz is the foremost expert on Lyme, invented an exact test performed at IGenex ) Lyme Disease: History & Controversies included proper way to remove tick. Additional resources ***http://justinandchrista.ca    This is your total education on Lyme, Husband films wifes struggle with Lyme over 5 years.  THIS IS A MUST  She screams in agony, it’s heartbreaking and may disturb small children. ILADS International Lyme and Associated Diseases Society  The association provides training for doctors for Lyme certification, tons of stats and how to find a Lyme Literate Doctor. Dr. Horowitz’s latest book, Why Can’t I Get Better: Solving Lyme and Chronic Disease ( downloaded but haven’t started yet ) If you want every detail, this presentation is for […]

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Caregiver

If You Think You Know Lyme It's Time For a Serious Refresher Course

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Over the past 6+ months my Neurologist has performed every test in her arsenal except a spinal. Every test she ran came back abnormal yet not able to pin down a diagnosis (see post Are Those My Brainwaves). She refered me to a Rheumatologist to start on the tread mill again. I started researching illnesses which included brain wave abnormalities to weed out my more common symptoms. There were the ones I expected, Lupus, Multiple Sclerosis or other autoimmune disorder. I didn’t think my answer would come from RA Doctor. More reasearch and what I found was alarming, not the illness alone, the politics and witch hunt taking place. The illness is Lyme or other tick borne illnesses. The CDC rates Texas as med-high concentration. The east coast is at epidemic levels with some articles stating we are facing epidemic levels across the country. I had a different idea for this post yet feel it’s critical to get this information out ASAP. When I learned of the divide in the medical community over Lyme, I shook my head. What is the controversy. The CDC establishes treatment standards for doctors. The standard Lyme test is based on 20-year-old information. What happens is you go to doctor for a Lyme test, it comes back negative. You then find out the test is 30% +/- correct. The CDC acknowledges the test has false positives yet the standard for testing hasn’t changed. With a lack of confidence in […]

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