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 · 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

Caregiver · Chronic Lyme Disease

Lyme Update #15 In Sickness and In Health

February 5, 2016 Looking for the Light25 Comments

Money can create stress in the strongest marriages. With Chronic Lyme the topic of money was an issue in our house. How does $39,000 for 7-9 months of treatment impact retirement plans? I considered not spending the money. That was a heated issue, I saw our retirement go down the drain, it wasn’t a good feeling.

The timeframe to wellness is 2-3 years. Based on mathematics, the cost will double or more. The financial side of Lyme is worth talking about. The cost of getting well hits the bank account hard. We pay $5,000-$6,000 a month which doesn’t include prescriptions………..

We fly to DC every four weeks to see doctor. The trips are often for an increase in IV antibiotics. If you have a bad reaction, it’s better to have a doctor in the next room.

Our insurance did not approve Lyme treatment which leaves us footing the bill. Insurance doesn’t pay for supplements but does cover all prescriptions including Heparin. My doctor currently is using antibiotics to address co-infections caused by Lyme. Another important key to health, is reducing inflammation in the body. There’s a war raging inside.

Every Sunday my husband changes the bandage protecting the catheter. It takes an hour to change.

He had to change his work schedule to administer IV Therapy. He gives my IV treatments, keep supplies inventoried, cooking, laundry, grocery shopping . Most everything is difficult to eat on bad ulcer days. After being on antibiotics for months, it takes a toll on your existing system. My esophagus doesn’t close and creates an ulcer. Those are the days I eat mashed potatoes.

I have antibiotic treatments, three days a week in AM and PM. The other days is Lactose treatment once a day.

Here’s an example of the friction when we don’t agree on my health.

My husband of 14 years said “you need to work out to improve strength.” The comment gave me whiplash! My antenna went up, we don’t fight or scream, just raise our voices and go to separate offices. I’m years away from good health, you want me to exercise? I laughed so hard, then foul language rolled off my tongue. The next words, are you crazy!!!!!!!

I have severe balance problems, walking forward and falling, walking straight then from side to side, if close to ground, I’m going down. I’ve had several bad falls lately. My husband turned in time to witness me slam into furniture last week. He thinks I need to use a cane in-house, I imagine being impaled while falling downstairs.

The cost is high but so is dying.

Xx M

Chronic Lyme Disease

Life After Lyme Diseases

January 5, 2016February 14, 2016 Looking for the Light4 Comments

Thank you for all the hugs and prayers, my heart overflows with sunshine. There is no question I will survive, a cure will come sooner than later.

Xx M

Caregiver · Chronic Lyme Disease

Glimpse into My life with Chronic Lyme Disease

January 2, 2016February 14, 2016 Looking for the Light29 Comments

I hope to have a Lyme Update post with information on the cost of treatment. Thank you for stopping by today. I am happy to answer any questions.

Xx M

Advocacy · Lyme · Lyme Literate Doctor

Hello friends I'm Back, Glad to see you

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

Advocacy · Lyme · Lyme Literate Doctor

Hello friends I’m Back, Glad to see you

October 26, 2015 Looking for the Light7 Comments

Lyme · Survivor

Lyme Journal Entry Eleven Lyme Winning Me..Mad As Hell

March 18, 2015February 14, 2016 Looking for the Light15 Comments

Four months ago I wrote the last Lyme Journal Entry. I thought my strength would allow me to blog thru the illness. Then the 5-6 month point turned my life upside down and it’s been hell. I fired Lyme doctor and not taking meds at this time. I know many are wondering why the hair photo? I was losing hair by the handful and showering was near impossible with longer hair. When you can’t stand, lift your arms or sit down without falling, showering is a problem. I planned a nice Army shave but David would not help. I grabbed the scissors and cut eight inches off. Feels great, looks like crap. Who cares?

I’m sure people have noticed my positive attitude is quickly sliding. The mounting problems are not all Lyme related. My cat Truffles is dying, lack of communication from my doctor, getting so sick and walking some days is extremely painful. Our bed was to hard so I moved to couch months ago. I lived on the couch now. Not bad for sleeping accept all the animals want to go out, poke me in back, cat needs to attack me. Even attempting to get enough sleep is impossible. With Chronic Lyme Disease sleep is your best friend and a key to survival.

Let me share some Lyme politics for newbies.

Most of the expert Lyme Literate Doctors, are not practicing. Several years ago doctors where watching people die using CDC standards, which states patients can only receive 2-4 weeks of antibiotics at most. The Lyme doctors who understood how the viruses worked knew 4 weeks was a joke. The doctors worked together helping each out calling in antibiotics for the others patients. I have Chronic Lyme, it can take 1-3 years to get well. Medication is one of the many ways to heal. Getting enough sleep is number one after the meds., take supplements, gluten-free diet and eat foods to help your body heal. No Coffee and drink only electrolyte water.

There was a huge division among Lyme doctors when the CDC allowed several doctors to patent the virus. Makes no sense to me. For years patients were clueless of the division. Both sides fought hard with the CDC to prove their data, from the video’s on YouTube it looks like the battle was lost before presentations started. The expert Lyme Literate doctors were quite vocal and a witch hunt is what followed the meeting. Doctors appeared before the Medical Board and where not able to practice, some for up to a year. Several doctors lost their clinic and everything they owned trying to keep their patients alive. It is a complete mess the CDC let happen, needless to say, I’m pissed. Just a little more background info to burn into you brain.

Many Chronic Lyme patients become so sick they are not able to work.The first reality is you no longer have insurance and can not afford new insurance if you could buy. I’ve watch video after video on YouTube of people with good paying jobs, rack up several thousand dollars in doctor bills and many have to file bankrupt, losing everything. One video told of a couple who owed their parents $500,000 dollars. Lyme effects everyone in your family, friends, your health and financial security.

It’s going on Spring in some parts but summer will be here quickly. I don’t want any of you or family members to struggle with a virus which looks like a worm. The viruses travel thru the blood until they can find a way to you major organs. Lyme likes to get cozy in the liver, kidney, heart and brain. I have three tick borne illnesses and Epstein Bar Virus. I have cognitive issues, my eyes constantly see things moving by my peripheral vision and balance is fleeting. I was in the bathroom two days ago about to reach for medicine cabinet. I slammed into wall hurting my writs and several fingers. If that wasn’t enough I slide down the wall falling on toilet and hurt my leg. The doctors don’t know how much of your ability will come back if any. You have to keep fighting.

Why I fired my doctor. My husband and I formed an impression at first appointment, not so good. I was desperate to start treatment and no other options.

* I start a couple of drugs until the Lab work is back. The follow-up appointment, the first words out of his mouth are you are in a great deal of pain. REALLY? His communication and organization skills are lacking. No pain meds prescribed. He has to call someone in to bring him something several times during appointment.

*I’m loaded down with over 50 pills to take a day plus 15-20 supplements and sleep all I can. The equation doesn’t work. I have gastro issues and the high-powered antibiotics made me nausea’s all the time. I asked to have PICC line in arm to give my stomach a break. He did not plan to use a PICC line? Almost every patient gets a PICC line so they can fill you full of drugs and bypass your stomach. My wheels are turning. He has lab work for me to do, I didn’t do it. He never asked about the Labs. He said my Lead levels were three times higher than normal, in dangerous range. No follow-up test ordered, it was like “so you know”. I’m scared, my brain is on overload, the test said current and ongoing exposure. I spent about two weeks looking for an answer. I looked at top of report one day, it wasn’t my report. Admin acted like no big deal. HIPPA laws are not new.

With the list of experts I start going down the list, ONE of the leading Lyme Literate Doctors stills practices. The doctors called before Medical Board and CDC. Now are full-time advocates/researchers. I phone his office in DC and they are taking patients. When you have cognitive issues filling out 50 pages is crazy. I stayed up last night to get everything I could without waking my household. With Gods help I will finish paperwork tomorrow and get appointment in next month or two.

ILADS is the professional organization Lyme Literate doctors belong to. I saw the tab on site for ILADS Protocol on Lyme. I jumped for joy. Let’s hit them with our best shot. We have boxing gloves on and the truth will come out. The document was extensive for the different stages of Lyme or other tick born illnesses. I felt so happy that others may not have to suffer in the near future. The document was well research by leading scientist, leading hospitals, large populations of people. I cheered when I read reasearch which outlined how the current system is incorrect, and they went all out. On the issues of insurance, extensive research with real patients exposed what the CDC is keeping from the public. If you want to learn more about Lyme, YouTube has so many videos, you might not have to go anywhere else. If you like the medical jargon go to ILADS site.

A shout out to others who suffer from Lyme or tick borne illness. I think of you, pray for you and send good karma your way.

XO Warrior

Lyme

What is on your Bucket List?

March 10, 2015February 14, 2016 Looking for the Light45 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 on the great attitude I started with. Dreaming and writing list put some fire back in the belly. We all have our struggles and thought I would share with you. It’s another night past 2AM and to sick to sleep. Writing doesn’t make me feel better but it gives me a kick in the ass and I needed it.

There’s an unlimited amount to learn, see, give back and baggage to let go of. My first Bucket List now started and written down. I’m a strong believer, if you can feel and see the goal, you can do it. This lesson proved true throughout my business career. I’m fighting hard against Lyme Disease. I’m going to live a full life, adding experiences which expand my soul and support others.

A sincere thank you and big hug for all the well wishes. I love hearing from you, you bring a smile on days when there are none. It will take a while but “I’ll Be Back”. XO Warrior

BUCKET LIST STARTED 2015

Tango Lessons

Visit Germany where my family lived before coming to America

Dive again, in 1999 I had panic attack and have not tackled fear

Enjoy Argentinian Wine Country, Twin P will escort me

Be a RAINN Advocate Speaker for Child Abuse and Rape

Volunteer for RAINN to offer support to women while going thru Rape Kit process

Currently starting charity focused on children’s education, providing basic supplies to women/children in shelters and growing community awareness

Provide pastoral support as Ordained Minister with a focus on dying children and the elderly.

Swim with Manatees, Dolphins and Sharks, Sharks only while in cage.

Ride a Camel and Elephant in native environment, treated ethically.

See every inch of Australia. Australia is several countries in one.

Hot air balloon ride French country side.

See coral reef bleaching on Great Barrier Reef, why bleaching? Natural, overfishing or chemical.

Visit countries safe for American women traveling alone. To build confidence, I like to travel alone to foreign destinations. Germany, Istanbul, India, Dubai, Alaska, a good start.

Learn to rescue animals who coexist in our neighborhoods, like ducks, rabbits, owls, bobcats and coyotes.

See fine Turkish rugs being made

Uganda to see Silver Back Gorillas

My organs save a life

I think seeing photos of past adventures will jack up my motivation.

Church of the Spilled Blood St. Petersburg, Russia

Lyme · Survivor

Taking my mind where it wants to go…..

January 28, 2015February 14, 2016 Looking for the Light16 Comments

Verna Falls Yosemite Park — Verna Falls
Yosemite Park

Taking my mind to where it wants to go. XO Warrior

Lyme · Survivor · Tick Borne Illnesses

Lyme Disease Journal Entry Nine Lyme-Winning Me-Hanging By A Thread

October 14, 2014February 14, 2016 Looking for the Light11 Comments

This is a 6 minute video from the 2014 Gala which raises money for Lyme Disease research. Patients talk in the video about the symptoms and difficulty getting a proper diagnosis. I have tears in my eyes.

Severe gastro illness after starting second Malaria RX added

Fatigue, exhausted and frustrated

Doubled neuropathy Rx in effort to reduce pain

Full body edema, very painful

My esophagus ulcer doesn’t like two Malaria RX’s

Very painful to walk with edema

Burning sensation in arms and legs, at times like fire ants attacking

Chest pains more severe, probably from edema

Left shoulder pops when moved, feels like dislocated

Have several pressure points which light up when touched

Watching videos Lyme videos on YouTube.com to learn what to expect next.

Justin and Christa Vanderham were a young couple planning a wedding when life went horribly wrong. They share first hand knowledge on the website. I have no idea how both kept their faith and marriage together. The video is roughly an hours long and chronicles five years of Christa’s life. I cry watching her pain every time, it’s a video no one should miss. justinandchrista.ca

Lyme · Moving Forward · Music · Survivor · Tick Borne Illnesses

Throw Back Thursday The Same Yet So Different Dedicated To My Twin

October 9, 2014February 14, 2016 Looking for the Light11 Comments

To my dearest twin, you are always there with your humor or words of encouragement. Thank you. 🙂

Lyme · Tick Borne Illnesses

Lyme Disease is an illness not who I am, losing is not an option

October 1, 2014February 14, 2016 Looking for the Light17 Comments

“You can’t be that kid standing at the top of the water slide, overthinking it. You have to go down the chute.” From BOSSYPANTS by Tina Fey

I wanted to drop a short note to let people know I’m ok. I have good and bad days however it’s easy for me to remember so many have life much worse. Today is one of the rough days which are frustrating and they fuel my desire to fight harder. I am planning now for activities once I’m well. I get very excited looking at my to do list, even at 51 yrs old there are so many things to learn and see. God has kept my depression at bay which makes each day a little better. I like to share with people what I learn on this Lyme journey, so there is a photo if you ever need to dispose of used needles. In the US LabCorp will take used sharps properly dispose as medical waste. I have also enclosed one of my fav photos. Getting a diving certificate was difficult for someone who is claustrophobic, I asked the teachers to spend extra time with me in the pool we trained in and this photo was taken the day I got certified. It was a big accomplishment not as much for the diving as for the self-confidence. I had not found my wings by 1987, getting certified was the first dream I acted on and accomplished. It felt great. Forget is was Feb. in Texas, F 45 and we tested in a rock quarry only 33ft deep. Three pulled out for hyperthermia. I did not realize at the time and it was a shock stepping out of the shower later. I had sever mask squeeze and both eyes were blood-red from the burst blood vessels. It was glorious day in my memory bank and have seen another life underwater. Thanks for standing by me.

Container for used needles. I take three B12 shots a week.

Warrior

Lyme · Tick Borne Illnesses

Lyme Disease Journal Entry Seven Lyme Winning Me Fighting Back

September 17, 2014February 14, 2016 Looking for the Light17 Comments

This past week I did everything the doctor said not to do. The backlash was frightening. One warning from doctor is not sit for longer than thirty minutes. I spent most of Saturday and Sunday in front of the screen with few walking around breaks. The edema took over most of my body. By bedtime my feet and hands were numb, the pain was excruciating. I knew my feet needed elevating. Our bed is adjustable, I raised the foot of bed as much I could stand. I kept raising my arms in air to get blood flowing, my legs hurt just touching each other. Once feet are raised the water moves up. I’m coughing, sounds like I have pneumonia, my head feels like it’s going to explode. I’m having cardiac pain, can tell my blood pressure was high. I get the BP Monitor to confirm its high,BP is to high, a blinding headache hits and I’m questioning how much higher my BP needs to go before I have a stroke. Do I need to go to hospital, digging around find my nitro which provides no relief. My whole body hurts, areas asleep earleyer are now tingling as the blood flows back in. During the worst point the seizures start. My husband is in full snore mode, never knew the light turned on twice or I was crying in pain. I knew something was bad when the cat would not move for me to get up. Requiring me to crawl over him adding to my frustration. Truffles didn’t move until I went to bathroom for a cold rag. He has never acted like this before, he could tell from my heartbeat I guess. The following day every muscle hurt, toes burning, my shins so full of water had to change from capris to wide leg PJ’s. The back of my legs burning, hurts to sit in chair. So strange,when you rub the bone on front of lower legs, it felt like leg broken. The next day the pain continues, maybe from the water making my legs so tight.

I brought all of this on myself. It’s hard to break old habits and let a disease dictate how to go about your day. My thinking is, get as much done now before I get really bad and body is not able to get out of beds on many days. Unless you’re a gluten for pain it’s a good idea to listen to doctor. These post are not a pity party. I truly believe someone will read the post and avoid getting Lyme. I want to educate on how serious the disease is. In the worst case scenario, it leaves you permanently debilitated. 🙂 M

General Issues

Ice pick in temple headaches

Edema has moved up to knees, walking uncomfortable

Bruise very easily, finding bruises, don’t remembering hitting anything

Tremors part of week, hands shaking so bad would not have been able to feed self

Seizures during the day, not as bad as the ones at night

Tired of taking so many pills

Memory, forgetting multiple times during task, example spelling Rosacea took six looks at dictionary to get correct

Lyme Arthritis in hands all week, right hand worse

Less neuropathy after increasing RX dosage, stabbing needles when does happens

Rosacea and Psoriasis in full inflammation stage

Stayed up till wee hours several nights which contributes to all the above

Lyme · Survivor · Tick Borne Illnesses · Travel

Can Anyone Tell Me What Day It Is? Yosemite National Park Here We Come

September 10, 2014February 14, 2016 Looking for the Light9 Comments

Mother Nature's Finest Yosemite National Park — Mother Nature’s Finest
Yosemite National Park

Waterfall Spray Yosemite National Park — Waterfall Spray
Yosemite National Park

I’ve been in the house so long there’s no reason to keep up with the day of week. Today is a perfect example, Throw Back Thursday is on Wednesday. I want to cry and laugh at the same time. The neurological effects of Lyme Disease sucks. In the Chronic phase the virus can set up house in the brain causing neurological damage. To remain as positive as possible I don’t focus on the effect to my brain. There is no way to know if the damage is permanent or not. One side effect is memory loss, like walking to the kitchen and not remembering why. It’s annoying and a reminder you have a virus boring thru your brain. I choose not to focus on the what or why even with constant reminders. I am not at the wheel and trust God to get me to the other side.I’m on a long journey that will give plenty chances to laugh, laugh with me, not at me. Overlook the missing words in a post, thanking you for stopping by more than once and Throw Back Thursday on Wednesday. Life is too short to worry about the little things. Let’s laugh, then focus on how we can help someone and have our collective voice heard.

Sending a heart-felt thanks and Texas size hug to you.

Lyme · Tick Borne Illnesses

Lyme Journal Entry Six Kicked Around But Never Down

September 4, 2014April 16, 2024 Looking for the Light14 Comments

God blessed me with the ability to feel empathy. He also filled my heart with sunshine. Today my husband participated in the Ice Bucket Challenge. My heart shines as I watch this challenge cross the globe. If we look, there is someone suffering more than ourselves. I work hard to keep in mind on the tough days. M

I’ve had a cold for a couple of days, germs rode in on my husband’s back. Thank you for the prayers and kind words, you lift me up. I have a positive outlook, no pity party here. Lyme Disease may kick me around but never down. A special shout out to my Twin in Germany, she keeps me rolling in laughter with vomit stories. You had to be there.

This is a list of probiotics, supplements, and shots taken in preparation for my antibiotic treatment. My next appointment is 9/17/14, I’m hopeful he will start the antibiotics.

Supplements

Magnesium Malate 1,250mg 1 daily
Omega 3,2126mg 1 daily
Alpha Lipoic Acid 600mg 1 daily
Multi Vitamin 1 daily
Acetyl L-Carnitine 500mg 1 daily
Reservatrol 150mg 1 daily

B12 Shot three times a week

Methylocobalamine 25mg/ml injection 1cc 3 x week

Probiotics
2 pills in AM

One liquid probiotic packet daily

To improve my overall health, I started drinking all-natural beverages. I discovered the Suja Life brand, they are certified organic by CCOF. The drinks are cold-pressed, organic, have no growth hormones, all-natural, and no preservatives. I put the liquid probiotic packet in the Coconut Almond, my daily lunch staple.

General Issues

Seizures often and are more intense

During a seizure episode, the eyes were closed but felt like a light bulb in the back of the eye. I experienced the same effect when my heart was in freak-out mode.

Neuropathy hurts like thousands of needles stabbing mostly my legs. Doubled neuropathy and pain meds

Edema in both feet, imagine not seeing your ankle bone, tight and painful to shins, hands are very bloated! 😦

Severe headaches

Pimple face, look 13 again 😦

Exhausted

Melinda

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

Lyme Disease Journal Entry Four First Back Slapping Turning Point

August 20, 2014January 18, 2024 Looking for the Light24 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 meds used. I like the pros and cons of each treatment, it allows you to work with doctor on which is best for you. Some doctors go far beyond a Gluten Free diet, which is outlined. Hopefully my doctor won’t fall into extreme category. There are recipes in the book, they sound great if you cook. I have lived on the same bars, granola snacks, yogurt and cereal. I like Suja drinks, cold pressed, no preservatives, no sugar, all fruit including berries with high levels of antioxidants. Taste great, is expense. My husband eats some Gluten Free snacks, in general we eat separate meals unless I feel like eating meat or eggs. I have not found it difficult to transitions, down the road may be a different story.

This week I’m focusing on the effects of Lyme Disease. Outlined below is not a pity party. I think if people see what everyday is like it will stick with them. If one person uses DEET and doesn’t get Lyme, I will dance to the music. Don’t forget to check pets including cats or any other outside/inside pets. This in the prime time of year for ticks.

The information on Epstein Barr Virus was taken from CDC site. 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.

*The bedtime set by the doctor is 9:00 PM, I have not made the bedtime yet. I think 11:00 PM is the earliest.

*My husband has to be home for me to take a shower. That crazy shower chair has caused me to fall twice. It’s worse when I close my eyes, get disoriented.

*One of the probiotics is liquid form to mix in drink. I can’t recall a med ever smelling so rank. I can’t breath when taking a sip.

*I take 3-4 pain pills a day, one taken at night to help me sleep. As a sleeping aid it’s awesome, the brain fog when I wake up is not. It takes a good thirty minutes to join the world.

*The fatigue and I have a difficult relationship. I can’t vacuum my office or much else. I feel tremendous guilt for not contributing to the household work.

*The edema hung around this week, up to my shins. The skin gets so tight it hurts, bumping into something is painful.

*Neuropathy in my hands along with Lyme Arthritis makes my hands very sensitive. My fingernail or pen can barely brush a finger and it feels like a razor blade. Both have little strength, causing me to ask for help. 😦

*I can’t tell you the last time I cooked or washed dishes, can’t stand that long. My husband has to do both.

*When I have a good weekend , I work on laundry instead of resting. Rest is hard, I feel totally lazy. 😦

*The guilt and other emotions can strain a marriage. 😦

*The unrelenting headaches can render you useless. All you can do is lay down, pray for sleep.

*I have ulcers in my mouth and nose, a side effect of one med. FUN!

*The amount of hair loss daily is depressing. Good thing I wear a ball cap most of time.

*Due to the level of inflammation in my body, infections pop up, this week it’s a bladder infection. So much fun!

*I stay positive even though I’m starting year five of being sick. A year spent on diagnosing Lyme. The remainder on heart issues. A lot of guilt builds up, it’s hard not to beat yourself up.

*In staying positive I think some new clothes are needed because I’m going to leave the house. It’s depressing to see the number of shirts with tags on them. In the big scheme I know I’m blessed.

*I have cut my hair for the past 8 months, good thing I watched my hair dresser. My hair is natural color with the grays out front. Why spend $125 on coloring and haircut when I don’t leave the house. Great use for ball cap.

*Reading lab results makes me crazy. I research every line, what does this mean, what is it connected to. I have worked hard not to play doctor this time. The time on internet is unproductive.

*A DNA test was performed. I didn’t know and a bit unsettling. I have gene mutations for two illnesses. I didn’t know what the gene mutations meant in detailed medical terms. WOW! Just seeing the number of doctors involved in verifying the result makes you blink. I did spend many hours learning about the mutations. I have to wait until appointment to see how the results impact Lyme or general health.

Fun · Lyme · Music · Therapy · Tick Borne Illnesses

Eric Clapton and Steve Winwood Jam to Presence of the Lord Live from Crossroads

August 15, 2014February 14, 2016 Looking for the Light5 Comments

I haven’t gone off the deep edge or forgotten what day it is. This song is the most beautiful rock song about finding God. This is dedicated to my friend/followers. Thank you for the kind words of support, prayers and overall positive thoughts. It would not be right if I didn’t mention EC is the master guitar rocker. The Rock Star in my head plays like my guitar idol. Have a great weekend. 🙂 M

Lyme · Tick Borne Illnesses

Lyme Diease Journal Entry Three Week of Rebellion

August 14, 2014February 14, 2016 Looking for the Light13 Comments

Gulf Shores Sunset 2 — Gulf Shores Sunset

JOURNAL ENTRY THREE

This week had its share of challenges. I completely rebelled, Lyme won the arm wrestle. Caution: For those who did not read last week. Lyme is prevalent in America, Canada, Germany and many other countries are seeing an increase. Lyme Disease can take one to three years out of your life. I know many of you don’t care to use DEET, neither do I. DEET is the only product protecting you from ticks. Any area where there are trees, tall grass or any other shrubbery is where ticks hang out other than pets. You can think it’s perfectly safe, your pets can bring them right to you. Use a spray DEET or sunscreen with DEET. If out enjoying mother nature dress accordingly, tall socks, long pants and long sleeve shirts. If the temperatures are smoldering, cover yourself in DEET spray or sunscreen.

* I’m sick of taking supplements. I haven’t taken them all week. The numbers of Rx meds taken daily is enough without extra supplement pills.

* The neuropathy was worse this week. My legs experienced more needle stabs. Hands, legs and feet went numb if sitting for more than a few minutes.

* Lab took 24 vials of blood Saturday.

* I was scheduled Wednesday for a day of testing, to ill to keep appointment.

* Experienced a strange eye issue. The peripheral vision was cloudy, the cloud created a small hole allowing me to see looking forward.

* The nausea is an ongoing issue, carrying a bag of cereal is my defense.

* I was very tired this week, which brings on more symptoms. I was very cranky. 😦

* The edema is back in my feet up to the shin. The skin is tight and red. The pain is magnified when I hit my feet on something.

* Seizures are happening during the day, not bad as nighttime seizures.

* I broke out in hives for a day due to stress.

* Massive headaches come and go daily. A step under Migraines.

I’m looking forward with a positive attitude knowing the doctors orders are the way to healthiness. I will fake it until I make it. Thank you for the outpouring of love and support last week. Every comment lifts my spirit. Have a Blessed weekend.

Lyme · Therapy · Tick Borne Illnesses

Lyme Journal Update: Entry Two

August 6, 2014February 14, 2016 Looking for the Light7 Comments

I have learned several lessons since the last journal entry. A word of caution. For those who enjoy the outdoors anywhere in the US, Canada, Germany and parts of England, please educate yourself on Lyme Disease. 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 thru 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 fly’s carry the Lyme Virus. Protect yourself by using a spray or a sunscreen containing DEET. Read about extra precautions you can take. Here are resources recommended by my doctor, lymenet.org, lyme.org, lymediseaseassociation.org (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, working in 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. I watched justinandchristavanderham.ca It took almost two years for Christa’s diagnosis, their entire ordeal took five years. Justin filmed the journey, it’s very powerful. It’s motivating to anyone battling Lyme. The video is an awesome education, if think you have or want to educate yourself. Christa threw up for nine solid days, more than once. That means my husband of 13 years will have to hold the bucket and see me throw up. I don’t look forward to that. I’m not including the jello thru the nose incident as throwing up.

* Enjoy the good days remembering overexertion and lack of sleep can make the symptoms worse. I was fooled last week, staying up till 1:00 or 2:00, one night 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.

* 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 diseases 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 name of band. I see the signer 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 HYPERARIC THERAPY. Maybe Michael Jackson can sleep in one, not me. The therapy is 1 1/2 hours long, laying in this weird chamber receiving 100% oxygen. I am claustrophobic, not to worst degree however put my in one of those and someone will not see the better side of me.

This morning 8/6/14 is the first time I cried, just lost it. I was reading the beautiful feedback from long-term friends/followers. I mentioned to my CTC Brother Willy last week, my fear of not being able to blog. I can’t express in words how much it means to be accepted for who I am. I’ve shared many of the worst experiences leaving myself raw and vulnerable. My heart overflows reading the comments expressing prayers and support.

Warrior

Lyme · Survivor · Tick Borne Illnesses

Documenting Long Complex Journey With Lyme Disease Journal Entry One

August 1, 2014December 15, 2022 Looking for the Light16 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. 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 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, then time to get stoned again before bed with the headache.

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, 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.

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 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

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. 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.