Lyme Disease Journal Entry Five Scoreboard Lyme-One, I’m Still Standing

April 17, 2024April 16, 2024 Looking for the Light24 Comments

Original post-2014

This week I want to give a brief overview on Gluten Free Diet and Epstein Barr Virus. Both were the top searches in last week’s post. I hope the information is helpful. The CDC is a great place to get up-to-date information.

Gluten-Free What does it mean?

My doctor follows The Mayo Clinic’s gluten-free diet: What’s allowed, what’s not. All information was 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 week. Wrong, no processed meats. You have to look for vitamins and medicines that use gluten as a binding agent. Remembering all this information is why I have started eating only items marked gluten-free. I don’t want to work that hard. A gluten-free diet helps people with Lyme Disease to reduce inflammation in the body.

Epstein Barr Virus

The information is from The Centers for Disease Control. Epstein-Barr virus (EBV), also known as human herpesvirus 4, is a member of the herpes virus family. It is one of the most common human viruses. EBV is found all over the world. Most people get infected with EBV at some point in their lives. EBV spreads most commonly through bodily fluids, primarily saliva. EBV can cause infectious mononucleosis, also called mono, and other illnesses. After you get an EBV infection, the virus becomes latent (inactive) in your body. In some cases, the virus may reactivate. This does not always cause symptoms, but people with compromised immune systems are more likely to develop symptoms if EBV reactivates.

EBV is spread by saliva through Using the same eating utensils, and toothbrushes, sharing drinks and food, kissing and having contact with toys children have drooled on

The first time you get infected with EBV (primary EBV infection) you can spread the virus for weeks and even before you have symptoms. Once the virus is in your body, it stays there in a latent (inactive) state. If the virus reactivates, you can potentially spread EBV to others no matter how much time has passed since the initial infection.

General challenges:

The neuropathy in the legs and hands is like getting stabbed with big needles. My hands and legs go to sleep very quickly while sitting down.

The fatigue has taken its toll over the past four days. I have spent more time sleeping than awake. Today is the first time I’ve felt good in a week.

I have revolted against the supplements this week. With my sleep schedule, it wasn’t worth trying to keep up.

The blinding headaches are a daily occurrence, the pain meds help, not crazy about taking pain pills. I will get well and don’t want a drug habit to break.

The edema causes my ankle bone to disappear and my legs to tighten up to the leg. Anything I bump into leaves a huge bruise.

The lab work did show Chronic Lyme Disease which means I’ve had Lyme for a year or more. I have to wait until 9/17/14 to get the complete run down.

I still have several tests to complete for the Cardiologist. Didn’t do well on the pulmonary part of the stress test. One breathing exercise only scored 55%.

What’s to come? I have no idea.

Melinda

Advocacy · Celebrate Life · Chronic Illness · Chronic Lyme Disease · Chronic Pain · Health and Wellbeing · Healthy Living · Lyme · Medical · Men & Womens Health · Therapy · Tick Borne Illnesses

Repost Of Lyme Journal: Entry Two *An Interesting Look Back

January 20, 2024 Looking for the LightLeave a comment

This post was written after I saw my first Lyme Literate Doctor. Quack! One day I’m reviewing the doctor’s notes again and realize I have another person’s file. I fired him because he said I had high lead levels and had to go through this horrible treatment, what else can I expect? The second doctor was a great success.

I have learned several lessons since the last journal entry. A word of caution. Please educate yourself on Lyme Disease for those who enjoy the outdoors anywhere in the US, Canada, Germany, and parts of England. If detected early doctors can usually treat with a short round of antibiotics. It is hard to think a tick the size of a period used in a sentence could do so much damage. I can’t imagine looking for a tick that size or a larger one the size of rice. The classic symptom doctors look for is called a Bulls Eye Rash. Up to 50% don’t get the rash, slipping through during the early phase.

The CDC acknowledges there are flaws with in Lyme Test. DEET and proper clothing are your only defenses against ticks. Other critters like mosquitos and flies carry the Lyme Virus. Protect yourself by using a spray or a sunscreen containing DEET. Read about extra precautions you can take.

Here are three resources recommended by my doctor, lymenet.org, lyme.org, and lymediseaseassociation.org (A great site for locating a Lyme Literate doctor)

* The doctor was right, when giving yourself a shot you have to go with gusto. I made the mistake of going slow, I had a little blood, a slight pain at the entry spot, and medication stained my shirt. You don’t have to stab yourself hard, pick your spot with enough stomach fat, and when you aim keep going.

* Managing the number of probiotics, pills requiring an empty stomach, pills with food, and working with my normal meds can cause a challenge. The key reason for the probiotics is to prepare your “gut” for the antibiotics. I’ve been told long-term use of high levels of antibiotics will take your stomach for a ride. I hate to throw up, it’s high on my list of things I dislike.

* Enjoy the good days remembering overexertion and lack of sleep can worsen symptoms. I was fooled last week, staying up till 1:00 or 2:00, one night at 4:40 AM. The past three days are a reminder, the lack of sleep catches up. If you wake up late it throws your med schedule off the next day if you sleep in. I’m the queen of sleeping in, there is no discipline to force myself to set an alarm to get out of my comfy bed to take meds.

* You could have several doctors on your support team. I can’t drive while drugged and jerking, my husband has to take the day off to shuttle me to appointments. I’ve had appointments one day every week for the past month.

* When you’re enjoying the good days, you don’t think about what day the symptoms will return. Upon return this time my symptoms are like an early Parkinson’s’. I’m herky jerky making typing difficult. I have to realize at this point the disease is in the front seat driving me. I have little control.

* As the virus invades my brain the neurological symptoms increase, last night I experienced 15-20 seizures before they let up. My memory is getting foggy. I picked a song for Throwback Thursday over the weekend. It’s Wednesday morning and I still can’t remember the name of the band. I see the singer on stage, some of the lyrics to songs yet the band name escapes me. It is hard to accept the disease is invading your body. I try to keep positive, looking at this as a growing experience. When you read my post or comments and I use the wrong word or make no sense at all please remember it’s the virus in me speaking.

* My doctor handed me a brochure for a Healing Center with a new state-of-the-art HYPERBARIC THERAPY. Maybe Michael Jackson can sleep in one, not me. The therapy is 1 1/2 hours long, lying in this weird chamber and receiving 100% oxygen. I am claustrophobic, not to the worst degree however put me in one of those and someone will not see the better side of me.

This morning, 8/6/14 is the first time I’ve cried, just losing it. I was reading the beautiful feedback from friends and followers and the level of support warmed my heart.

Warrior

In 2014, I went by Warrior and then decided my name was more personal.

Melinda

Advocacy · Celebrate Life · Chronic Lyme Disease · Chronic Pain · Fibromyalgia · Health and Wellbeing · Lyme · Medical · Men & Womens Health · Mental Health · Survivor · Tick Borne Illnesses

Documenting Long Complex Journey With Lyme Disease- Journal Entry One

December 15, 2022January 18, 2024 Looking for the Light7 Comments

I was reminded today that I had Lyme and thought I would share with you the first post I wrote in 2014.

It’s been a long time since this first Lyme blog, I found it interesting and naive. I hope you enjoy reading. If 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 what goes on an empty stomach with food. Can’t forget the shot to the stomach three days a week. Adjusting the new meds has not been fun, I’ve been stoned out of my mind the bulk of the day, then a massive headache moves in, and then time to get stoned again before bed with the headache.

My gripe is it’s not being stoned, it’s brain fog with the floor moving under your feet. David has to take me to appointments since I can’t drive. I’m a sight to see, a woman, stoned out of her mind trying to maneuver a cane while walking.

I had my first appointment with a new Cardiologist yesterday, he has Lyme Disease experience with a specialty in blood flow. He is one of three doctors who will manage my Lyme journey. The RN performed an EKG, and then his Assistant reviewed my medical history, asking what seemed like 1000 questions.

The doctor is next, we talk about how Lyme can affect blood flow in the heart and the entire body. The general exam with discussion on the test he has ordered. I left wearing a Holter Monitor which comes off at 2:45 PM today. I push a button on a small device and put it up to my chest anytime I feel dizzy, have cardiac pain, trouble breathing, etc, etc.

I leave with the schedule of tests for next week which takes 3 1/2 hours when to pick up medicine for tests and the great news is to show up fasting. A couple of tests I’ve done it multiple times due to my heart condition. The Tilt Test is what it sounds like, the table moves to a head-down position for 30 minutes. The test is more frightening than giving me a shot. They may see a panic attack instead, that’s a lot of time without control and no way to escape.

Echo Cardiogram

Q Sweat Test-Study of Sudomotor response assisting in the diagnosis of small fiber neuropathy

Tilt Table with Trans Cranial Doppler monitors mean blood flow velocity

Tilt Table with ANSAR-Determines how well the Autonomic Nervous System is functioning

Tilt Table with BIOZ-Determines the heart’s ability to deliver blood to the body

Tilt Table with QST-Assesses sensory neuropathy

Metabolic Stress Test

Lipid Profile

I have blood work from last week to complete, 20 plus vials get me as excited until she says the stool sample requires freezing! I’m now 1 hour 45 minutes before the monitor comes off. The time for a shot and a handful of pills. Are we having fun yet?

My heart and soul go out to those struggling with Lyme, it’s a long complicated journey. I know you’re strong enough to fight the virus in your body, though it may not feel like it today.

Melinda

Advocacy · Health and Wellbeing · Lyme · Lyme Literate Doctor · Medical · Men & Womens Health · Tick Borne Illnesses

Summer Here Its Time For Ticks

May 20, 2022May 20, 2022 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

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

Advocacy · Chronic Illness · Health and Wellbeing · Lyme · Lyme Literate Doctor · Medical · Men & Womens Health · Tick Borne Illnesses

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

May 19, 2022May 19, 2022 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.

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

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

Health and Wellbeing · Lyme · Tick Borne Illnesses

Lyme Disease Journal #Five Scoreboard Lyme-One, Me-Still Standing

September 23, 2019 Looking for the LightLeave a comment

This is a repost from 2014 discussing a Gluten-Free diet. The information is an overview and may help if you’ve been told to start your Gluten-Free journey.

I hope this answers some of your questions and starts you on your way to less inflammation in your life.

Have a great day and always thank you for reading, I appreciate you. I love reading your comments so keep them coming.

Melinda

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 week. Wrong, no processed meats. You have to look for vitamins and medicine that use gluten as a binding agent. Remembering all this information is why I have started eating only items marked gluten-free. I don’t want to work that hard. A gluten-free diet helps people with Lyme Disease to reduce inflammation in the body.

Epstein Barr Virus

The information is from The Center for Disease Control. Epstein-Barr virus (EBV), also known as human herpesvirus 4, is a member of the herpes virus family. It is one of the most common human viruses. EBV is found all over the world. Most people get infected with EBV at some point in their lives. EBV spreads most commonly through bodily fluids, primarily saliva. EBV can cause infectious mononucleosis, also called mono, and other illnesses. After you get an EBV infection, the virus becomes latent (inactive) in your body. In some cases, the virus may reactivate. This does not always cause symptoms, but people with compromised immune systems are more likely to develop symptoms if EBV reactivates.

EBV is spread by saliva through: Using the same eating utensils, toothbrushes, sharing drinks and food, kissing and having contact with toys children have drooled on

General challenges:

The neuropathy in legs and hands is like getting stabbed with big needles. My hands and legs go to sleep very quickly while sitting down.

The fatigue has taken its toll the past four days. I have spent more time sleeping than awake. Today is the first time I’ve felt good in a week.

I have revolted against the supplements this week. With my sleep schedule it wasn’t worth trying to keep up..

The blinding headaches are a daily occurrence, the pain meds help, not crazy about taking pain pills. I will get well and don’t want a drug habit to break. After starting antibiotic treatment in a couple of weeks, may change my mind.

The edema causes my ankle bone to disappear and legs tight up to shin. Anything I bump into leaves a huge bruise.

The lab work did show Chronic Lyme Disease which means I’ve had Lyme for a year or more. I have to wait until 9/17/14 to get the complete run down.

I still have several test to complete for the Cardiologist. Didn’t do well on the pulmonary part of stress test. One breathing exercise only scored 55%.

Health and Wellbeing · Lyme · Lyme Literate Doctor · Tick Borne Illnesses

Documenting Long Complex Journey With Lyme Disease Journal Entry One

June 24, 2019 Looking for the Light3 Comments

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 what goes on an empty stomach, which with food. Can’t forget the shot to stomach three days a week. Adjusting the new meds has not been fun, I’m stoned out of my mind the bulk of the day, then massive headache moves in, then time to get stoned again before bed with the headache.

My gripe, it’s not a being stoned, its brain fog with the floor moving under your feet. David has to take me to appointments since I can’t drive. I’m a sight to see, women stoned out of her mind trying to maneuver a cane while walking.

I had my first appointment with new Cardiologist yesterday, he has Lyme Disease experience with a specialty in blood flow. He is one of three doctor’s who will manage my Lyme journey. The RN performed an EKG, then his Assistant reviewed my medical history, asking what seemed like 1000 questions.

The doctor is next, we talk about how Lyme can affect blood flow in the heart then out the entire body. Then general exam with discussion on the test he has ordered. I left wearing a Holter Monitor which comes off at 2:45 PM today. I push a button on a small device, put up to my chest anytime I feel dizzy, cardiac pain, trouble breathing, etc, etc.

I leave with the schedule of test for next week which take 3 1/2 hours when to pick up medicine for test and the great news to show up fasting. A couple of tests I’ve done multiple times due to my heart condition. The Tilt Test is what it sounds like, the table moves to a head down position for 30 minutes. The test is more frightening than giving me a shot. They may see a panic attack instead, that’s a lot of time without control and no way to escape.

Echo Cardiogram

Q Sweat Test-Study of Sudomotor response assisting in the diagnosis of small fiber neuropathy’s

Tilt Table with-Trans Cranial Doppler monitors mean blood flow velocity

Tilt Table with ANSAR-Determines how well Autonomic Nervous System is functioning

Tilt Table with BIOZ-Determines the heart’s ability to deliver blood to the body

Tilt Table with QST-Assesses sensory neuropathy’s

Metabolic Stress Test

Lipid Profile

I have blood work from last week to complete, 20 plus vials get me as excited as the stool sample that requires freezing! I’m now 1 hour 45 minutes before the monitor comes off. Then time for a shot and hand full of pills. Are we having fun yet?

My heart and soul goes out to those struggling with Lyme, it’s a long complicated journey. I know you’re strong enough to fight the virus in your body, though it may not feel like it today. I look to the survivors before me for support during my journey. Let’s all pray for each other, that’s what support is about.

Warrior

Chronic Lyme Disease · Lyme · Lyme Literate Doctor · Moving Forward · Tick Borne Illnesses

Powassan Virus worse than Lyme Disease?

May 3, 2017 Looking for the Light1 Comment

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% DEET is recommended, the last I read.

I was very active before Lyme, hiking, taking photos for the beautiful land around us. Once my legs are stable I will be outdoors, there’s nothing more satisfying. How I prepare is completely different. First before getting dressed, spray a sunscreen with a minimum of 20% DEET. Reply every hour if sweating or in heavy wooded ares. Wear white soaks with your pant leg tucked in light-colored pants. Wear a white or light colored shirt, a hat that is longer in back to cover your neck. Be vigilant with your kids, going is back yard to play, better spray.

Most important, do tick checks on you and the kids throughout the day. Take some tape and if see a tick don’t touch it, pull it off with tape. It’s not very sexy looking like a nerd out hiking. Look at it this way, being sexy while hiking is not possible. Tick Borne illness are not sexy either, you age quickly, I have admit to struggling with how I’ve aged, not feeling attractive anymore, gained 50 pounds, lost 50 pounds and no control over your body.

Watch these extremely important videos and educate yourself. Know the early signs and a short antibiotic treatment may provide a cure. The Lyme rash doctors talk about only 30% get the bull’s eye rash. The test most doctors use do not test for all strains of the illness. I’ve had multiple test over the past three years and not once did I show positive for Lyme.

https://www.aol.com/article/news/2017/05/03/tick-borne-illness-worse-than-lyme-disease-powassan-virus/22067432/

Xx M

Chronic Lyme Disease · Lyme · Lyme Literate Doctor · Moving Forward · Tick Borne Illnesses

Lyme Update 18 Chronic Illness & Controlled Substances

May 1, 2017May 3, 2017 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

Celebrate Life · Chronic Lyme Disease · Crazy? · Family · Lyme · Lyme Literate Doctor · Moving Forward · Tick Borne Illnesses

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

July 17, 2016 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.

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.

🙂

Advocacy · Caregiver · Celebrate Life · Chronic Lyme Disease · Family · Lyme Literate Doctor · Moving Forward

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

June 8, 2016June 8, 2016 Looking for the Light13 Comments

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 you’re searching for the big ugly pair. Buy a size larger. If you suffer from Edema another half-size makes your day. Edema makes my feet look like melons.

Don’t forget pajamas, undergarments, bra extensions, or Cami.

Your bladder can overflow without warning.

Can’t walk, can’t drive.

Load books, podcast and free College Coursework.

Because the catheter CAN’T EVER get wet, no shower and washing hair a nightmare. I did find a fix. Buy two hairstylist capes with velcro around neck. Wear one backwards the other normal. The backwards one tends to fall forward, I safety pinned arms and pinned back s much as possible. I used 2-1 shampoo, towel close for water in my face and drying towels within distance.

Many households keep rolling due to your efforts.The caregiver will feel like your mother or father at times. Without caregivers, life will weigh you down. Be generous, a thank you goes a long way. Caregivers handle day-to-day task, make appointments, manage medication. Pill maintenance is a full-time job.

I’ll share the next 18-24 month journey to wellness with you.

I can’t express the love in my heart for supporters, friends and followers You’ve stayed by my side in prayer and saying positive words over me.

Xx Melinda

P.S. The reference learning to fly is Sky Diving from 18,000 feet.

Chronic Lyme Disease · Family · Lyme · Lyme Literate Doctor · Tick Borne Illnesses

Avril Lavigne on Her Struggle with Lyme Disease

April 15, 2016 Looking for the Light3 Comments

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

Chronic Lyme Disease · Lyme Literate Doctor

Dr. Jemsek “Speaks the Truth”About Lyme Disease

April 15, 2016 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

Advocacy · Lyme

Correct address for Looking for the Light, lookingforthelightblog.wp.com

November 30, 2015February 14, 2016 Looking for the LightLeave a comment

My previous content has not transferred yet. I’m moving forward with new post lookingforthelightblog.wp.com.

Thank you for following me, I appreciate your comments and friendship. We can all help others. I’m here for you, just leave a note.

Have A Blessed Day.

XO Melinda

Advocacy · Lyme · Tick Borne Illnesses

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

November 7, 2015February 14, 2016 Looking for the Light28 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 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

Advocacy · Lyme · Lyme Literate Doctor

Hello friends I’m Back, Glad to see you

October 26, 2015 Looking for the Light7 Comments

Advocacy · Lyme · Lyme Literate Doctor

Hello friends I'm Back, Glad to see you

October 26, 2015February 14, 2016 Looking for the Light7 Comments

Lyme · Lyme Literate Doctor · Survivor

How Does Being Blind Change Your Life ?

October 4, 2015February 14, 2016 Looking for the Light13 Comments

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. It makes sense now, I have three tick borne illnesses, at least one is attacking my brain. The optic nerve is referenced in books as both Upper or Lower. I now see how Lyme could cause inflammation of the optic nerve. I’m scared of going blind. It doesn’t cross my mind until I see something that is not there.

I have a positive outlook and will deal with any challenge God puts in front of me. I’ve had so several health issues. Brain surgery at 33, at 28 cervical cancer with a total hysterectomy and two terrible car wrecks. I’m a strong woman like my granny, nothing kept her down.

XO M

Lyme · Lyme Literate Doctor

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

October 2, 2015February 14, 2016 Looking for the Light16 Comments

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

Advocacy · Lyme · Lyme Literate Doctor · Tick Borne Illnesses

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

September 10, 2015February 14, 2016 Looking for the Light5 Comments

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

Celebrate Life · Survivor

Putting foot in the Dirt Nominated Me For Liebster Award Yay!

August 18, 2015February 14, 2016 Looking for the Light22 Comments

Michelle from puttingmyfeetinthedirt.wp.com nominated me for the prized Liebster Award. Michele’s blog is informative, Christian based and makes you stop and soul search at times. I really enjoy talking to her and learning about her life outside of blogging. You have to check out her site puttingmyfeetinthedirt.wp.com , Michelle’s writing will inspire you.

11 facts about me

I watch true crimes programs on tv. I’ve learned so much about basic self-defense, stalking and how many family members kill each other. It’s very informative.

I’m concerned about underserved children in my community and shelters. My concern expands to children around the world. Working with children is the first initiative of the charity.

I love Pop Tarts, grateful for delicious gluten-free brands.

I loved jewelry as a child and have several necklaces made as a little one. Making jewelry builds my confidence, growing when each piece comes out correctly.

A family of Hawks hang out on the bird bath. They enjoy drinking and cooling off. Sometimes three get in bath, making it a bit overcrowded.

I love to compost, worms and all.

Love to decorate and or planning changes.

Enjoy mapping my Ancestors, have found big surprises along the way.

Enjoy learning, there are thousands of free courses. I recently started a course at Stanford University on Human Trafficking.

Riding horses is a spiritual experience.

Love antique Leica rangefinder camera’s.

I have to duck out on nominations due to health. Take a look at your blog, have you worked hard to achieve original goals. If so you deserve the award. Follow the rules and pass the award along.

XO M

Advocacy · Lyme · Lyme Literate Doctor · Tick Borne Illnesses

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

July 30, 2015February 14, 2016 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

Advocacy · Caregiver · Sexual Abuse · Survivor

Randstein nominated me for Once a Victim Now a Survivor Award

July 30, 2015February 14, 2016 Looking for the Light24 Comments

Thank you my friend Randstein

A special thank you to Randstein for nominating me the Once A Victim Now A Survivor Award. Randstein is a good friend, always happy to help, writes the most fantastic stories. His short stories give you plenty to think about. Randstien’s blog is hyperionsturm.wp.com. He’s a founding member of survivorsbloghere.wp.com I’m glad to have met him, my life has expanded.

This award is for those who have gone through mental illness of any kind, abuse, trauma, and especially PTSD.

The Rules:

1. Thank the blogger that nominated you

2. Nominate 5 – 10 bloggers to pass the award to

3. Post 5 questions for your nominees to answer (you may use the same as these below)

4. Inform your nominees and post a comment in their blog to let them know they’ve been nominated

Questions:

1. In what ways do you feel that blogging can help people with psychological trauma or mental illness? I think writing can help in many ways. It’s perfect outlet to share, work thru pain and trauma. Blogging provides support from people who are a few steps ahead. The experience of putting your pain in a post can give a feeling of success. Writing thoughts down can help you see what needs more work. Posting takes a load off, no matter how small. We gain confidence one step at a time.

2. How has blogging helped you with your healing, or your personal journey? I started blogging after years of therapy, not needing as much help. My background made me compassionate, realizing I’m a Caregiver. When someone takes my hand for help, my heart overflows with sunshine.

3. What books, movies, or YouTube channels would you recommend to someone with a similar background to you? (Books Always)

Shock by Kitty Dukakis & Larry Tye A personal story of Kitty’s experience with ECT

50 Psychology Ideas You Really Need To Know Adrian Furnham

Bipolar Disorder-A Guide For Patients & Family Francis M. Mondimore M.D. I participated in a study for John Hopkins and he interviewed me. Nice guy and excellent book.

Natural History of Emotions by Stuart Walton’s He examines the core emotions based on Charles Darwin’s survey of emotions. I’m reading again, the reason I always buy books.

4. When did you start your blog and what inspired you? My current blog stated on 9/22/13. My father committed suicide 9/2001. He was on my mind, I wanted to express my pain.

5. What types of blogs do you follow? I follow blogs similar backgrounds or circumstances. I follow blogs that appears the person is spiraling down and needs help. Sometimes its people who visit my blog and they look interesting. I don’t follow rant blogs.

Nominees:

This is where I have to bail on my commitment. I can not following thru on making nominations. I am battling an illness and must choose how to use less the least energy. I’m on bed rest. Thank you for the prayers and standing by me. Huge Hugs.

If the Award applies to you, please accept and pass along.

Hugs Melinda

Celebrate Life · Lyme · Lyme Literate Doctor · Travel

I'm Blessed To Celebrate My Birthday With You I get stronger every birthday

July 19, 2015February 14, 2016 Looking for the Light63 Comments

Worhol Wall — **Glimpse Of Warhol Wall**

Verna Falls Yosemite Nation ParK — Painted Verna Falls Yosemite National ParK

I hope everyone has a great day. Everyone can celebrate the blessing of today. It’s fun posting photo prints, you can see my interest outside of WP. You can see another side of me.

Let’s Celebrate the day together.

XO M

Celebrate Life · Lyme · Lyme Literate Doctor · Travel

I’m Blessed To Celebrate My Birthday With You I get stronger every birthday

July 19, 2015 Looking for the Light63 Comments

I hope everyone has a great day. Everyone can celebrate the blessing of today. It’s fun posting photo prints, you can see my interest outside of WP. You can see another side of me.

Let’s Celebrate the day together.

XO M