Short Informative Videos on Lyme Disease

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 […]

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Lyme Progress #4 *Photos*

 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 […]

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Lyme Progress #1 Pain Management

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 […]

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Lyme Update #20: *Moving Forward*

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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Shop Amazon Smiles, Donate to Your Choice Cause

Amazon donates to International Lyme and Associated Diseases Educational Foundation when you shop at AmazonSmile. Please bookmark the link http://smile.amazon.com/ch/51-0604603  so all your eligible shopping will benefit ILADEF. If you have any questions, please sign in to http://org.amazon.com and click on the Help tab to see our FAQ topics. Thank you for your participation in the AmazonSmile program! Thank You Melinda

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Lyme Update #19 *My Last Nerve*

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, […]

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Powassan Virus worse than Lyme Disease?

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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Lyme Update 18 *Chronic Illness & Controlled Substances*

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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 Bumpy Road With Chronic Lyme Diseases  Keep Moving Forward 🙏

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 […]

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Thank You For Love And Prayers

Chronic Lyme has invaded my brain, emotions and bodies ability to move without tremendous pain. I’m blessed to have pain meds and others to provide comfort. Not being to walking is depressing. I wanted to thank you and Twitter buddies for your love, prayers and awesome videos sent my way. I love James Brown, his grove is infectious. “I Feel Good” video is my fake it till you make it  positive thinking. The second, well just to see his grove! The man can dance. Both made me smile and you make me smile brighter. Without a doubt better days are ahead. God has my path planned out. Xx Melinda

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ILADS Response To Centers of Medicare/Medicaid Services of Health & Human Services

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 […]

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

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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Avril Lavigne on Her Struggle with Lyme Disease

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

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Dr. Jemsek “Speaks the Truth”About Lyme Disease

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

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How Does Being Blind Change Your Life ?

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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Lyme Journal Entry 12 *Summer Refresher, NO ONE Is Immune To Lyme*

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. […]

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