Chronic Lyme Disease

Lyme Update 18 *Chronic Illness & Controlled Substances*

3 Comments

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 […]

Read More →

Chronic Lyme Disease

Dr. Jemsek “Speaks the Truth”About Lyme Disease

3 Comments

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

Read More →

Advocacy

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

28 Comments

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 […]

Read More →

Advocacy

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

17 Comments

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. […]

Read More →

Lyme

What is on your Bucket List?

45 Comments

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 […]

Read More →

Lyme

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

24 Comments

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 […]

Read More →

Caregiver

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

15 Comments

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 […]

Read More →