If your doctor does not listen to your physical complaints change doctors ASAP. This holds true for anyone. Lyme is real, Chronic Lyme does exist and there is no cure. Some will argue using supplements will cure Lyme. Do your homework if this sounds like the healthy treatment. Many Lyme patients take supplements, conventional and non-conventional medicine. I took more […]
But Here’s What You Should Really Worry About The New York Times reported yesterday that a new-to-the-United-States tick species has been identified in seven states in recent months, after an infestation was first discovered last summer in New Jersey. The tick is native to Asia, where it is known to carry a dangerous virus that kills 15% of the people […]
It’s summertime, ticks and insects carrying tick born illnesses are worse than last year. Practice all precautions if out in tall grass, tall scrubs or trees. I’m in semi-remission which consist of Dementia, Fibromyalgia, Neuropathy, Lyme Arthritis, Cognitive issues, pain, falling, pain and pain medicines. There are days you want to cry, scream, on and on. Chronic Illnesses can consume […]
You may have noticed the name change from Lyme Update to Lyme Progress. The reason for the change, it’s time to start looking forward, short term and long term. I still struggle with illnesses which Lyme left behind and have days can’t get out of bed. WINNING is looking forward. The chronically ill understand this mind-set. After dismissing my Lyme […]
I fired my Lyme Literate Doctor The last straw! My Lyme PA prescribed a medication which interacted with a psych medication. Making me Psychotic, pure bat crazy. Scared of myself. Walking in circles non-stop until exhausted. It took days for the medication to clear my system and bring me back to earth. It was life changing. I said horrible things […]
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Am I healing from Chronic Lyme Diseases? Who knows? Lyme doesn’t have a cure, only times of remission. There’s no way to plan for lingering health problems you will get, will or won’t recover from. Symptoms may go away over time, stay same or get worse. There’s no definitive test to gauge how your major organs are affected unless the damage is severe. The symptoms I struggle with daily are pain, pain pain, lack of balance, some memory has returned looking like a Tommy Gun practice. There are days when I can remember for a few minutes instead of seconds. If you’ve read my post the past two years, you’ve seen the cognitive issues. I can’t recall the proper name of items, have no concept of time and don’t fully recognize inflection. After two years in bed, I started to relearn walking in mid March. Falling is a physical daily threat. As my body gets physically stronger there are years of doctor and dentist appointments to catch up on. Before Lyme I started to develop Agoraphobia which has manifested to extreme levels anxiety leaving the house. Every doctors appointment is a challenge. The Lyme doctor prescribed a drug in the same class as one I take for my mental illness. I became Psychotic, waiting a week to touch down in reality. While Psychotic I wanted to hurt people, I was ANGRY. The person I became was not me, yelling, screaming, […]
Port Removed long after recommended time. At last Psychiatrist appointment he questioned why the port had not been removed. He is also a Medical Doctor and proceeded to tell me all the flesh-eating, horrible infections a port can cause. I said not going to D.C. in several month for surgery. We received a referral from General Doctor, had surgery the […]
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% […]
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 […]
I included the photo to show I’m very organized and life is getting ready for change. *The chatter are my thoughts, a Lyme Literate Doctor can consult and talk about options.* Xx M Living with Chronic Lyme Disease, requires tremendous faith, inner and physical strength. Please search to discover you’re core strength: it strength may save your life. Have you […]
The International Lyme Disease Association (ILADS) http://ilads.org, knows Chronic Lyme Disease exists, requiring extensive treatment currently restricted by the Center of Disease Control. The letter is a proactive communication advocating for longer treatment options. Taken From ILADS letter to Centers for Medicare & Medicaid Services Department of Health and Human Services. RE: Proposed Rule concerning antibiotic stewardship in Hospitals, Critical Access Hospitals and Nursing Homes Additionally, the proposed rule emphasizes measures to eliminate discrimination directed at certain groups. The ILADS comment pointed out that persons with Lyme disease and tick-borne infections constitute a large and growing class of individuals subjected to severe and unjust discrimination which requires recognition and correction. Specifically, although many individuals in this group of patients often require longer courses of antimicrobials than are commonly prescribed, many are denied appropriate care based on arbitrary protocols that do not consider the specifics of their case. While ILADS recognizes that there are differences of opinion in the literature, after a thorough review of the evidence regarding Borrelia burgdorferi, the agent of Lyme disease, ILADS concluded that here is substantial scientific support for persistent infection. For this reason, ILADS promotes the selective and judicious use of extended antimicrobial therapy in patients with Lyme disease rather than the arbitrarily proscribed treatment durations championed by others. http://www.ilads.org/ilads_news/2016/ilads-statement-on-cms-proposed-rule-concerning-antibiotic-stewardship/ To read the entire response, click on link above. You will see the organizations fundamental beliefs, commitment to improving treatment for Lyme and other tick […]
Let’s Talk Lyme Last update, we talked about IV Therapy as a treatment option for Chronic Lyme Disease. IV Therapy is one type of medicine to help you heal. I also take a close to 20 prescriptions and who knows how many supplements. Insurance doesn’t pay for the IV Therapy which is quite common. To ask a question thru the […]
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
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 […]
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 […]
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 […]
A chronic illness will flush out the weak emotionally and physically. Adversity brings out the true colors in people and those who love them. I’ve attacked Lyme Disease like other challenges in life, fight with a big stick and jump higher. My husband runs the household, carrying a heavy load. I’ve been sick for five years and he is still at my side. It’s not for lack of effort on my part to make him leave. Last week was the worst emotionally since being diagnosed with Lyme Disease. I had appointments with the Lyme Doctor and Cardiologist. This was the first appointment with Lyme Dr. since all test were completed. You know you’re off to a good start when the first thing out of his mouth is you are very sick and in a lot of pain. NO KIDDING. That was not surprising but what followed blew my mind. The test showed my body has 3 times the amount of Lead acceptable, high Mercury levels and high Cesium. I’d never heard of Cesium, it’s a naturally occurring element found in rocks, soil and dust at low concentrations. Lead levels at 3 times the upper expected limit say recent and ongoing exposure. Lead accumulates in the body, at some point I’ll have Chelation treatment. The side effects of Lead are extensive including organ damage. I have racked my brain on what could cause Lead damage in the house and come up […]
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 […]
