Repost from 2014 So much time has passed since this first Lyme blog, I found it interesting and naive. I hope you enjoy reading. Maybe you’re at the beginning of your Lyme journey. I’m always here for you. M Scheduling probiotics, medicine, and supplements is a challenge. With probiotics you have to wait before eating or taking meds, then juggle of […]
I started at 8:30pm deciding on video’s. After years of enjoyment, YouTube and VeVo are enforcing copyright laws. Somebody has an answer, please leave a comment or email msandorm@verizon.net. The Shania Twain video is an example, of the the copyright screen. I stopped at 1:00am, way past bedtime. I’m praying for progress today. Here’s a snack while I work on desert. Xx M
The post is my opinion based on my own experience and talking to people with Lyme Disease. The symptoms of Lyme Disease are the same as many chronic illnesses. The parasites move quickly, if not caught early, the more difficult to treat. Lyme is a serious illness, it moves to major organs which bring on worst symptoms. I have Chronic Lyme and two co-infections. The parasites have moved to my brain, causing cognition, balance, eyesight and pain is severe. Most days I’m in bed due to pain and trying to reducing inflammation. I’ve included an interview with Lorraine Johnson, CEO of lymedisease.org. She discusses Lyme, CDC and how Lyme Diseases is a serious illness. The time to take precautions is now. Xx M
Dr Jemsek is an Infectious Disease Doctor who played a pivotal role identifying AIDS in N. Carolina.You will hear him mention in the video. He is my hero and my Doctor. There are several treatment methods, each Doctor is different. I’m on antibiotic IV Therapy 5 days a week, Lactose Ringer when not on IV Therapy, close to 30 supplements, Morphine Patch, two horrible liquid Rx’s and close to 35-40 prescriptions. YouTube is an awesome source for Lyme information. Xx M
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 […]
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. […]
We were in DC last week for appointment with Lyme doctor. The Pope being in town caused roadblocks and much excitement. Perfect weather, I could tell from the hotel window. The appointment was originally scheduled as phone update. I’m so frustrated, the doctor needed to see and hear. I contemplated not having treatment. If I could die from treatment, they […]
Most countries are seeing warmer Fall and Winters, which allow ticks to live. Keep in mind enjoying hiking this Fall. Lyme Specialist recommend a spray with 20% DEET. Please read the article written in New York Magazine by a doctor who contracted Lyme Disease. He shares the difficult journey for diagnosis. It is heart breaking. Due to delay in […]
I’ve been sick for years without a correct diagnoses. I took a wild guess and found a Lyme doctor. A reckless one. He gave me a lab report saying I had three times the level of lead than normal. We spent three days looking for LEAD. I called the office, while on hold I realized this wasn’t my labs. Chronic Lyme Disease is a long battle. I wanted the best Doctor possible, off to D.C. for my first visit with Dr. Jemsek. I learned the Lyme Disease has progressed. My cognitive ability is 50-60%, I have Adrenal Fatigue, it can take five years of treatment to get well, or well as I’ll get. The tests were positive and will allow for IV Infusion Treatment. The next step is how much insurance will cover. Without insurance coverage the cost of IV Infusion Treatment for six months is $40-60K. I also have to fly to D.C. every month for checkup. FUN! FUN! I sincerely thank my friends, you’ve lifted my spirit with every comment of well wishes. I’ve included videos showing people who have Chronic Lyme. One video is my doctor, Dr. Jemsek. The crowd is mainly patients he’s treated over the years. Celebrating the premier of his movie Under Our Skin. XO Melinda Jemsek speaks out Avril Lavigne **Everyone who spends time outside or has children playing near wooded areas. The video is an hour-long homemade video made by her husband. […]
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 […]
Four months ago I wrote the last Lyme Journal Entry. I thought my strength would allow me to blog thru the illness. Then the 5-6 month point turned my life upside down and it’s been hell. I fired Lyme doctor and not taking meds at this time. I know many are wondering why the hair photo? I was losing hair […]
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 […]
Taking my mind to where it wants to go. XO Warrior
There are three tick born illnesses making a home in my body. I’ve been kicked in the gut, stomped to the ground and rolled over by a truck the past few weeks. The monsters inside have met their match. I ain’t going down that easy. I’ve been to sick to update my Lyme Journal, many days I feel like death. On better days I feel like an ice pick is stabbing my forehead. My body rejects me, today falling when only three feet from the ground. The doctor said I could die at my last appointment. I do not visualized myself not getting up and won’t. I want to live each minute, feel it, make plans, add to my bucket list (Tango Lessons), keep learning and looking forward. Both songs are strong inspirations to me, enjoy today, the people I love and keep an open heart. Many have sent me words of encouragement, love, well wishes and lots of laughs. Thank you from the bottom of my big Texas heart. I appreciate everyone who prays for me and takes the time to write. My heart overflows with sunshine. Life is short, if we could live each day like it was our last, what a wonderful world it would be. XO Warrior
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. […]
This is a 6 minute video from the 2014 Gala which raises money for Lyme Disease research. Patients talk in the video about the symptoms and difficulty getting a proper diagnosis. I have tears in my eyes. Severe gastro illness after starting second Malaria RX added Fatigue, exhausted and frustrated Doubled neuropathy Rx in effort to reduce pain Full body edema, very […]
To my dearest twin, you are always there with your humor or words of encouragement. Thank you. 🙂
“You can’t be that kid standing at the top of the water slide, overthinking it. You have to go down the chute.” From BOSSYPANTS by Tina Fey I wanted to drop a short note to let people know I’m ok. I have good and bad days however it’s easy for me to remember so many have life much worse. Today […]
This past week I did everything the doctor said not to do. The backlash was frightening. One warning from doctor is not sit for longer than thirty minutes. I spent most of Saturday and Sunday in front of the screen with few walking around breaks. The edema took over most of my body. By bedtime my feet and hands were […]
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
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 […]
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 […]
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 […]
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
JOURNAL ENTRY THREE This week had its share of challenges. I completely rebelled, Lyme won the arm wrestle. Caution: For those who did not read last week. Lyme is prevalent in America, Canada, Germany and many other countries are seeing an increase. Lyme Disease can take one to three years out of your life. I know many of you don’t care […]
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 […]
Repost from 2014 So much time has passed since this first Lyme blog, I found it interesting and naive. I hope you enjoy reading. Maybe you’re at the beginning of your Lyme journey. I’m always here for you. M Scheduling probiotics, medicine, and supplements is a challenge. With probiotics you have to wait before eating or taking meds, then juggle of […]
This hurdle has been on my mind for days. I’m not afraid of needles, it’s the thought of drawing the med out of bottle then injecting into my stomach. I cleared the hurdle with room to spare. I was diagnosed with Lyme Disease last week, it’s been a whirlwind of new meds, supplements and schedules. I will […]
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 […]
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 […]
I went to my General doctor for shoulder pain three months ago. He refered me to a Neurologist. After several test, I know both legs have nerve damage, I have abnormal brain waves in two areas with no seizures and I’m falling more. She did two test to measure my brain waves, one test lasted three days. My follow-up appointment next […]
