Tag: Lyme arthritis

Summer Here Its Time For Ticks

Published on by Looking for the LightLeave a comment

This is a post I wrote in 2015 right after my port was inserted. I feel it’s important for people to understand the magnitude of Lyme Disease, it can be life-threatening if it develops into the chronic stage like mine did.

Summer is right around the corner and most won’t give ticks a second thought. Here’s a photo of why you should. IV Antibiotic Therapy is administered the same way chemotherapy is, thru a port straight into your system.

The amount of antibiotics required to fight Lyme is so high your stomach can’t handle it. Your stomach has a hard enough time with the medication you do have to take and the nausea medication only goes so far.

You can’t begin to imagine the care that goes into changing the port bandage, it’s critical that no germs enter the port area. It could cause a deadly infection.

You can prevent Lyme with a few simple steps, please take them while you are out enjoying your summer.

Wear DEET

Check for ticks

Stay out of the tall brush, or tuck your pants into your socks

Wear a hat that hangs down on the back to prevent ticks from falling down your shirt

Wear white socks so you can see the ticks crawling up your legs

Happy trails!

Melinda

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

I had surgery for a Port today, 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.

The procedure is short, it takes longer to prep than do surgery. A catheter goes into a small section of the heart, then is brought thru the skin to take medicine through the tubing hanging down with a 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 the 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 a piece of rice. P.S. mosquitoes and flies can also carry Lyme. The best revenge is a sunscreen with 20% DEET. If out hiking in pants tucked into socks. Wear light-colored clothes and search like crazy once home, think of a tick that small in your hair.

Starter Regime 

Five Supplements (every day)

Seven RX pills  (every day)

10mg Morphine patch (one a week)

M, W & F  Antibiotic Drip 2 times a day with 2 shots of Heparin

On all other days, two bags of lactose for detox with a shot of Heparin

Each drip takes about an hour

Blood Test once a week

Fly out-of-state once a month for doctor’s appointment

You can not get the bandage wet. Stick saran wrap over the bandage, and you can shower, only if you can do magic tricks. 

I hope seeing a photo and reading the post will help put the two together.

XO  M

Repost If You Think You Know Lyme, It’s Time For a Serious Refresher

Published on by Looking for the Light1 Comment

This is a post from 2014 that is just as relevant today as it was then. Lyme kills and it’s totally preventable. Here’s a snapshot of my story at the time. It’s a rather disjointed post as I’m very sick at the time. The facts are the same, the CDC doesn’t have a proper record of Lyme cases and still doesn’t acknowledge that long-term Lyme exists which relates to insurance not paying for care. 

We were put in the very position of having to take out a second loan on our house for my $150,000 medical bills. I still have many complications with my health today some most likely related to Lyme.

Yes, Warrior was the nickname I went by in 2014. 

Photo by Erik Karits on Pexels.com

2014

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 she was not able to pin down a diagnosis (see post Are Those My Brainwaves). She referred me to a Rheumatologist to start on the treadmill again.

I started researching illnesses that included brain wave abnormalities to weed out my more common symptoms. There were the ones I expected, Lupus, Multiple Sclerosis, or other autoimmune disorders. I didn’t think my answer would come from RA Doctor.

More research and what I found was alarming, not the illness alone, but 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 the doctor for a Lyme test, and 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 the test, I wanted to see a Lyme Literate Doctor. What blew my mind was a current-day Salem Witch Hunt is happening. On one side of the controversy are doctors who specialize in Lyme and tick-borne illness. If a tick bite is not caught right away it grows in your system. Lyme looks like a long skinny curly worm. It bores thru your body damaging your organs or brain depending on where it lands. The symptoms can move around your body as the virus spreads.

Lyme is hard to kill, it can encapsulate itself in an invisible cocoon and is near impossible to see under a microscope. The Lyme doctors take the approach, attack the virus aggressively for long periods of time to prevent a relapse. People who are very ill from Lyme can require years of antibiotics. Not only to kill the virus more importantly to save your life.  Here’s the rub, the CDC states that 2 weeks of antibiotics will cure Lyme and doctors can prescribe an extra 2 weeks if needed. Medicare pays based on the standard set by the CDC. Insurance companies only pay what Medicare pays.

Doctors treating Lyme patients until they start to get called before the Medical Review Board and have their license taken away for a year. Insurance companies are canceling people’s policies and they are left with 150k+ in out-of-pocket expenses. People have to decide do they lose their house or get their loved one’s treatment. It is heartbreaking to watch the videos on YouTube.

There are two main associations which doctors join, it has become one assoc. for long-term treatment and the other against. Most doctors go underground and do not list themselves as Lyme Literate.

When I decided to seek out a Lyme Literate doctor it was a process. I called the association, and they took the info on where I lived and would call back. The next morning I received a call with a doctor’s name and phone number. I later found out the doctor I’m seeing was the first to lose his license for a year. I didn’t know if I should jump for joy or not.

I can’t stress enough how serious the illness can get. I’m battling over 50 symptoms on any given day. The size of tick you are looking for is a nymph about the size of a sesame seed. When you’re doing tick checks on you and the kids, these are hard to see. Around 30% of people get a bulls-eye rash. Please remember to check your scalp, they can hang out in your hair. A flashlight might help with this task.

I’ll keep you up to date on how my appointment goes. I’m not worried about what, I need an answer to move on to the next hurdle. I will do a f/u post including more information about treatments.    Warrior

****************

 

 

Lyme Update 18 *Chronic Illness & Controlled Substances*

Published on by Looking for the Light3 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 not reducing inflammation on your body. Inflammation is key to treating Chronic Illness. Temazepam (I’m addicted to) is a Controlled Substance, Insurance companies approve refills somewhere between days 3-5 days before running out.There’s no Texas law on when Controlled Substances are refilled. CVS made the decision to help end Drug Addiction by only refilling two days before running out. CVS made change without telling customers. The new policy on refilling your prescriptions has a huge impact on every customer. Refilling prescriptions two days before running out may cause high levels of anxiety and difficulty to make it to CVS two days before running out.

The reason I went crazy, my Temazepam, which had increased dosage , new script already at CVS pharmacy. I’m coming out of withdraw and already having nightmares of two withdraws in one month.I usually take the problems and get it done, my anxiety was so high, I had a Mental Break. Walking around with a note of how many days before running out.

All of life’s challenges ask us are we ready for the next challenge, can you rise up. I trusted God and the future before me. I’ve learned Chronic Lyme had impacted my self-image, always talking about how long before I died, always being asked who are you talking to.

The last couple weeks you’ve seen me struggle with my confidence. I’m bleeding out. I pray you learned something from the post and can a skip withdraw.

Xx  M

Lyme Update #16 *Lyme Winning–Me, blew a gasket and leaking oil

Published on by Looking for the Light8 Comments

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 patient Portal it’s $45 dollars. I blew a gasket last week and the portal is running hot. I’m blessed we have the money and see a top Lyme Doctor. I think there is a book called She’s Come Undone. I came undone and still finding parts.

Before quitting work, I was a highly successful, the top salesperson in the company. I set very high goals for myself and those who interact with clients. If I made an error I was accountable to make it right with the clients. If one of my people made a mistake, they got the eye and then I had to take responsibility.

There are several PA’s working in the office, mine is the hard ass, just the way I like it. I meet “The” PA while mine was out. I wasn’t impressed but chalked it up to being new. David and I have conference calls to see how adjusted to medicine, all the questions you wish would end. I heard my PA was not available for two weeks so we are meeting with the PA another PA. I am meticulous about my health care, I would reschedule before going to a fill in. I kept saying I’m not talking to her. She was reading questionnaire and David was answering. She said Melinda how are you feeling, ” ok except I almost split my head open. The knot was 5-6 inches big and it really hurt. ” Oh, that sounds like it hurt. My firecracker was lit and would blow any minute. In addition to passing over hitting my head on concrete, she said the IV that was on backorder was in and she would a one week protocol. After the one week, I am off IV’s and take ton o meds. She even indicated we might be able to coordinate to have my port removed.

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A couple of hours later I’m putting my medicine for the week. Right away I notice two drugs on the schedule I don’t take. I became a complete baby and ass. I refused to take my IV’s or other meds last week. We’ve dipped into retirement money to save my life. I don’t think I expect to much from the office. First she would have seen none of my Psychiatric medicines are manages my the Lyme Doctor. The had written at bottom to continue to take two Xanax at bedtime. RED FLAG. If an IV medicine has been out of stock for months, I would as the person in charge if any where delivered. RED FLAG. My head still has a painful bump and on going headaches. So, nothing they can do. RED FLAG. She wrote the new oral prescriptions and changed to date to travel to their office instead of later.

The point other than the rant is if you are not feeling right, stop and have them start at beginning. If you’re dealing with another person instead of you normal person. Slam the breaks. I was so worked up, the chest pains started. I decided I would wait until morning to write the $45 letter to my PA

Chronic Lyme Disease is not a common cold or chicken pox, people die from Lyme. I didn’t want to add to the stats. I’m not suggesting you blow a fuse. If you are not getting the treatment expected or information is not shared with you, you have no clue when they think you’ll get well. Get a new doctor and maybe scream.

There are many details to manage everyday. If I can keep track with only 30-40% cognitive ability, what’s their excuse?

I still owe you a story about TSA checking my body parts for the world to see. Be prepare if you flew in/out Reagan National.

I’m always open for questions, you’re not bothering me and I’m glad to help.

🙂

M

Dr. Jemsek “Speaks the Truth”About Lyme Disease

Published on by Looking for the Light3 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

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

Published on by Looking for the Light28 Comments

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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 days, two bags of lactose for detox with shot of Heparin

Each drip takes about an hour

Blood Test once a week

Fly out-of-state once a month for doctor’s appointment

You can not get bandage wet, sticky saran wrap over bandage, you can shower. If you can do magic tricks. 

I hope seeing a photo and reading the post will help put the two together.

XO  M

Lyme Update 13: *On Yellow Brick Road With The Wicked Witch*

Published on by Looking for the Light16 Comments

Vintage Floral and Grungy Background

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 needed more skin in the game. Staffers taking days to return calls or giving different answers. Most of the frustration comes from not starting treatment. I left with several prescriptions, one a Morphine patch. Finally she understood how much pain I’m in. We left with a surgery date and what to expect the next 9-12 months.

I’m scheduled for surgery 10/25/15 to implant the catheter which is part of IV Infusion Therapy. The catheter goes in your arm or upper chest, to the heart and comes out in upper chest. Twice a day for 9-12 months, a sterile process of preparing medicine takes place with every Infusion. We are waiting to hear if RN will prepare infusion or I have to do. I will have a RN once a week to change bandage on port in chest.

The trip to doctor in DC last week was difficult with a cane. I’ll have to take wheelchair soon. I’ll go to DC once a month, it will not take long to break my body down.

There is a war going on in my body, we’ll see how IV Therapy attacks the monsters within. A battle is taking place in my brain.

The cost of is always on my mind. We’ve made sacrifices for years to live comfortable in retirement. I feel tremendous quilt. The doctor estimates five-years to get well/well as get. Not only does it change our daily life with the treatments, we may not have money to get us thru retirement. I’ve made the decision to stop therapy when the money concerns reach a certain level.

Next month is busy. I pray some good news comes my way.

XO  M

Lifesaving Lyme Disease Article And Resources For Safe Activities Outdoors This Fall

Published on by Looking for the Light5 Comments

 

staiway in forest

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 diagnosis he had several heart surgeries and ultimately a heart transplant. Shocking even to me. XO M

Helpful Resources:

New York Magazine

http://nymag.com/scienceofus/2015/06/what-its-like-to-have-severe-lyme-disease.html?ncid=newsltushpmg00000003

International Lyme and Associated Diseases Society

www.ilads.org

Lyme Disease Network
www.lymenet.org

Lyme Info
www.lymeinfo.net

Photo by Graphic Photos

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

Published on by Looking for the Light17 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. I urge everyone to watch. It will remind you DEET products are the only recommendation by Lyme Specialist. I don’t like DEET but if saves a child or yourself from getting Lyme, it’s a tradeoff I’d take.

XO M