*********NEW DOMAIN FOR MY BLOG**********

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Please be advised that I have moved my blog to a new website.  It is still free to read and no sign up necessary! There, I find it a bit easier to add links, etc.  

As of March 2012, I have updated it, but current health situations have slowed me down again.  Hopefully, I will be back to writing soon!   

My new blog site is located at http://www.myblindspotjourney.com

My current email address for my blog is deb@myblindspotjourney.com  Feel free to contact me at any time and I will respond as soon as I am able to! 

Thank You very much for taking the time and interest to read my blog and learn more about lyme disease and co-infections. 

I look forward to hearing from you!

~Debbie

New Domain For My Blind Spot Journey

I now have my own domain for my blog. I hope that you will continue to follow along with me on my Chronic Lyme Disease Journey. It has  the same look and feel, just a location in which I have more control over.  Thank you for your support and encouragement!

www.myblindspotjourney.com

Take the Time to Learn about Lyme ~ Recommended Reading and Viewing

Take the Time to Learn about Lyme

I have read, am in the middle of reading, or have on my reading list numerous books pertaining to Chronic Lyme Disease and Co-Infections.  It is vitally important to educate ourselves in this world that is quickly becoming a battle ground of infected diseased critters in our own backyards!  Knowledge is Power, especially when dealing with a disease that is misunderstood and misdiagnosed by the medical community whom we rely on for sound advice and treatment.  We have to be our own advocate for our health.  We know our bodies like no other.  Educate yourselves about lyme disease; not only for yourself but for those around you.

When I am researching material about Chronic Lyme Disease and Co-Infections, along with discussing things with my doctor, together we decide what will work best for ME.  I am open to all suggestions, and will look into all of them.  However, I make my decisions based on my beliefs, my body, my knowledge and my doctor’s suggestions.  I believe it is important to share information, but never force it upon anyone.   What works for one person will not necessarily work for another person.

“Cure Unknown – Inside the Lyme Epidemic” was my ‘Eye Opening,’ ‘Lightbulb,’ ‘AH HA Moment’!

After being treated for Lyme Disease in 2004 without ever fully recovering, yet receiving no additional treatment due to ‘guidelines,’ a friend of mine suggested I read the book, Cure Unknown- Inside the Lyme Epidemic,”  by Pamela Weintraub.  It was an eye-opening, lightbulb, ah ha moment for me.  It was MY first step in taking my life and recovery into MY own hands.  After reading this book, I contacted the CDC doctor who first treated me for Lyme Disease and discontinued treatment.  You can read more about that ‘discussion’ in my blog post, “A Note to My Doctor.”  Needless to say, the conversation with him led me to continue researching  Lyme Disease and encouraged me to find another doctor.  I highly recommend this book, especially for those who are just starting this long Lyme Disease journey.  It is indeed,  “a ground breaking investigation into the medical history, patient experience and brutal political  war over Lyme Disease.”

 

I also highly recommend a very informative series by PJ Langhoff.   Listed below:

It’s All In Your Head, Patient Stories From the Front Lines, by PJ Langhoff   Book 1

"It's All in Your Head, Around the World in 80 Lyme Patient Stories," by PJ Langhoff Book 2

"The Baker's Dozen & the Lunatic Fringe," by PJ Langhoff Book 3

PJ Langhoff’s new book,God Science is on my list of TO-READS!

"God Science," by PJ Langhoff

 

Healthy eating habits are a necessity when fighting Lyme Disease.  An informative book I recommend is, The Lyme Diet,” by Dr. Nicola McFadzean.

The Lyme Diet,” by Dr. Nicola McFadzean

 

A book that is easy to understand AND informative is Everything You Need To Know About Lyme Disease and Other Tick-Borne Disorders,” by Karen Vanderhoof-Forschner.

 

LAB 257 –  The Disturbing Story of the Government’s Secret Plum Island Germ Laboratory,”  by Michael Christopher Carroll is one that will really get your mind thinking.  It makes perfect sense to me!  So many cover ups!  Pretty scary, but a MUST read!

 

The following book,The Top 10 Lyme Disease Treatments,” by Bryan Rosner, was very helpful to me before I restarted treatment in 2010.

 

The Documentary, “Under Our Skin,” is a MUST WATCH DVD for all people with Lyme Disease, loved ones and supporters of those with Lyme Disease and for those who wish to simply educate and protect themselves.  It is two hours filled with some of the most important things you will ever learn.

I can not emphasize enough the importance of educating yourself when you are faced with such a debilitating disease.  If you can not cognitively take on the act of educating yourself, please ask someone close to you.  Please reach out to a supportive, positive person to help you.  You can not do this alone.  Surround yourself with positive people and together, educate yourself to the best of your abilities!

As I continue to research and read books, I will update this page.  I know I have several books lent out to friends to read.  With my ‘lyme brain,’ I can not remember the names of the books.  I WILL update this list.  If you know of other informative books to read, please let me know.  The more we learn about this, the more we can help ourselves and others.

TAKE THE TIME TO LEARN ABOUT LYME

Lyme Disease Awareness Ribbon

Six Months into Treatment

 

I am six months down the road of treatment for my Chronic Lyme Disease and Co-Infections. I have many more months, maybe years, possibly even my lifetime to go.

 

6 Months = 1/2 Year = 182.621099 days of Treatment for My Chronic Lyme and Co-Infections.

It took me well over 6 years,  to be properly and successfully diagnosed for Chronic Lyme Disease and Co-Infections.  Even though I had gained necessary knowledge about Lyme Disease and Co-Infections during those long six plus years, the medical community I was looking to, turned a blind eye to everything I said.  Now, after being properly diagnosed I have hit the six month mark of my extensive treatment.  My medications have changed over the course of this time to better address the infections and changes within my body.

I spoke to my incredible lyme literate doctor, Doctor ‘H,’ at great lengths the other day.  Discussing my current symptoms, the ones that have somewhat subsided and the ones that have continued to haunt me, he felt it was best to make changes in my treatment plan.  “At this stage, the six month mark, we should be seeing more of a breakthrough in the Bartonella and we are not.   We need to change-up your meds a bit.”

February 24, 2011.  I am now on the following treatment plan:

Continue on Rifampin 3 times a day.  I am only a good 2 months into taking Rifampin.  Doc ‘H’ believes I need to give it at least 3 months to see if the Rifampin is making any positive changes.

Discontinue Doxycycline.

Start Omnicef. This is the pill/tablet form of Rocephin.   In 2004, when I was first treated for Lyme Disease, I self-administered Rocephin through a PICC line several times a day.  Unfortunately, I was not ‘allowed’ by the CDC to continue treatment long enough for me to eliminate the lyme infection.  That is why I am where I am today:  treating what is now Chronic Lyme Disease and Co-Infections.  I am fighting for my life.

Continue Nexium once a day to protect my ‘gut.’

Continue High Potency Probiotics daily.  I currently take PEARLS Elite 5x High Potency Probiotics.  Probiotics are necessary to keep ‘good bacteria’ in your intestines and ‘gut.’

Continue Nystatin 3 times a day to control yeast growth.  Taking strong antibiotics for a long period of time will kill all the bacteria in your system including the good bacteria.  That is why it is essential to replenish the good bacteria by taking a High Potency Probiotic AND take a fungal control medication such as Nystatin.  Otherwise, you could easily acquire intestinal yeast, as I did early on in my treatment.  I was not taking a strong enough probiotic.  With in a couple of weeks of treatment, my abdomen filled up with yeast and swelled to the size of a six month pregnancy.

Continue Prenatal Vitamin (easier on stomach) 1 tablet daily.

Continue Ester C, Magnesium and Alpha Lipoic Acid daily.

I also continue healthy eating habits.  I have eliminated most if not all sugar and carbohydrates.  Sugar feeds the yeast.  I do not eat any fruit since fruit also contains sugar.  Even the natural sugars are dangerous and feed into the yeast growth.  Since my body is already susceptible to yeast, it is important NOT to feed into it.  I follow a diet high in protein and low in fat. I eat as many fresh vegetables as I can.  I am anxiously awaiting Summer when our vegetable garden will be flourishing with fresh vegetables to eat!

I do not consume caffeine, except for one cup of coffee in the morning.  These days I have lost my taste for coffee.  Therefore,  it has not been difficult to cut out the morning cup of java.  I do not drink ANY alcohol.  Not only would consuming alcohol at this time make it more difficult for my body to heal, but also, the medications I am on would cause some serious side effects if mixed with alcohol.  I drink large amounts of water throughout the day.  I drink water throughout the night, having a large jug filled on my bedside table.  Green Tea is an excellent choice for another healthy beverage.  I drink it occasionally.  I have found a detox tea, Yogi Detox Tea, that I enjoy.  It helps to detox the kidneys and liver while on strong medications.  The important thing to note is this tea can only be consumed at certain times.  If consumed too close to the taking of medication, it will ‘wash out’ or eliminate the medications just taken, therefore not allowing the medications to do their job.

My Current Symptoms:

Numbness on my right side is becoming increasingly worse. I find myself stumbling a lot because of the loss of feeling in my right leg.  It is difficult to walk.  I rarely drive unless it is a very short distance.  I do not trust my right leg at this time.  It is difficult to hold objects in my right hand.  The fingers on my right hand are constantly cold.

Hair Loss.  This is a new symptom.  Thank God I was blessed with a thick head of hair.  I spoke to Doc ‘H’ about my hair loss.  He confirmed it was part of the treatment and actually a good sign that they treatment is starting to work.

Severe neck spasms and muscle spasms throughout my entire body.

Deep penetrating muscle pain, mostly in the large muscle groups.

Severe migraine headaches.

Sensitivity to bright light and sound.

Depression.  My depression has become much worse.  I cry easily at just about anything.

Short term memory loss and Brain Fog.

Cognitive Issues continue, however, I do feel I am able to read, write and think more than before I started treatment.  There are still days when nothing makes sense to me, I can not speak clearly or focus.

No appetite.  None whatsoever.  I have to make myself eat.  I follow an eating schedule along with the medications I have to take.  Everything has to be properly in sync.

Fever and Night Time Sweats.

I have lost between 20 and 25 pounds in the last six months.

I have made it six months into treatment.  However, I know this is only the beginning.  As Doc ‘H’ told me the other day, “Debbie, you only have the tip of your toe in the water at this time.  You have a long way to go.  If you stop treatment now, there is the issue of mortality.  You did not become CHRONIC over night.  It will take a long time to treat you, but I will do as much as I can to get you there.”  He also mentioned that as long as he has been treating people afflicted with Lyme Disease and Co-Infections, it is the people like me, who educate themselves to the best of their ability; those are the ones who tend to heal more quickly, if not physically, than mentally.

I will continue my journey.  I will continue my research.  I will continue to try and help educate people about Lyme Disease and how dangerous it is.  I will continue to be a Lyme Disease Awareness advocate.  My DREAM is that people will start to listen, learn and act.  Then my journey will be worth my constant pain, my changed life, the dreams I have been forced to put on hold or possibly throw away, the sacrifices my family has had to make, and possibly the loss of my life.  If only more people would listen.

 

Vampires in the Garden

The beauty of nature is fast becoming a deadly battle ground. We are the prey to an insect as small as the period at the end of this sentence.

Most people would say I was a typical child.  In retrospect,  I see my childhood as one like no other.  I was given the opportunity to live in two different worlds; the city during the school year and the country at the lake during the summer.  I don’t know when or where I first became infected with Lyme Disease and it’s Co-Infections.   It could have been many, many years, even decades,  before my first onset of symptoms in July 2004.  The dreaded bite of the vampire could have happened in the city while playing in the fields and parks or even in our own back yard.  Having lived my summers in Northern Wisconsin, I could have first been infected there.  I will never know.

To this day, I would consider myself a country girl 100 percent.  I even ‘earned’ the nickname, “Jungle Jane,” after introducing my city loving husband, Vince, to the ways of a nature loving country life.  He grew up in the city with little exposure to the kind of outdoor, nature involved activities I knew of and loved!  Fishing, skiing, sailing, canoeing, bugs, worms, swamps, frogs, bats, mosquitos,  horse flies, deer flies and for us,  my life changing TICK.

As a young adult, while living in Georgia for 11 years, my strong passion for gardening began.   With the lengthened growing season, it was an enlightening way for me to spend my then, lonely days.  Although I had to deal with the possible Copperhead sleeping in the ivy, I found my gardens to be not only beautiful to the eye, but also warming to my soul.  I would ‘play’ diligently among the flowers, pulling weeds as the beautiful birds and other small creatures scurried around me.  Not once did it occur to me that I was ‘playing’ among vampires.

In the late 1990’s,  I moved back to Wisconsin, and purchased a modest home on a piece of land just shy of an acre.  To some, the large piece of land only appeared an enormous amount of grass to mow.  To me, however,  it was my empty canvas.  I quickly started to sketch out plans for what would soon become my perennial cottage style gardens.  I buried myself in the gardens.  It was my sanctuary.  I loved to watch things grow.  Learning the beloved gardener’s sport of  ‘SPLIT and DIVIDE’, it wasn’t long before the grassy areas were transformed into cottage style gardens surrounding the house.  I learned to respect the fuzzy bumble bees.  It was their hard work and dedication to pollinate each and every flower that helped to keep the gardens flourishing.   The butterflies and fancy moths were breathtaking as they floated through the air from one blossom to the next also pollinating.  Little did I know, among the beauty was also a deadly beast, a vampire:  The Tick.

These tiny ticks have become Vampires in the Garden

For Mother’s Day in 2008, my kids and husband ‘gave me’ a vegetable garden.  I had never grown a vegetable garden.  The only thing I knew about vegetable gardening was watering and picking my parent’s garden when they were out-of-town.  “Remember Debbie, water UNDER the plants, not on top of the plants!  It is much better for them!”  A lesson I practice to this day even with my flower gardens.   My Mom, being an avid composter, loved her dirt!  She called it her “black gold.”  Learning these things and more from my parents helped me with my new gift,  my quest and project:  a vegetable garden.   I have to admit, Vince quickly became the farmer in this project!  On weekends, I would find him sitting on a small stool in the vegetable garden, pulling weeds all the while taking inventory of our new crops!  The first growing season he accidentally pulled up all the sugar snap peas thinking they were weeds.  Quickly forgiven.  We all make mistakes!

Setting up our Vegetable Garden

Our flourishing Vegetable Garden later that season.

The 'fruits' of our hard labor

Even while continuing my long treatment process to hopefully one day put my Chronic Lyme Disease in remission, if not cure it, I still enjoy the gardens.  People ask me, “How can you spend so much time outside?  Why do you subject yourself to the ticks knowing the damage they have already done to you?  Aren’t you afraid of the ticks?”  The questions go on and will most likely continue.  My answer is quite simple:  “I love the outdoors.  I love nature.  I love gardening.  Yes, the tiny vampires  in the gardens, known as ticks, that infected me with Lyme Disease have changed my life, but I can’t stop living because of it.  You must educate yourself and protect yourself.   If I stop doing what I love to do, then the TICK wins…. and I don’t want the TICK to win.”

Ticks are everywhere these days.  From soccer fields, to deep wooded areas.  From golf courses to outdoor picnics.  From backyards to school yards.  They travel from one host to another making their habitat widespread.  They prefer wooded areas and deep grassy areas. However, they are also found at the edge of wooded areas.  They seek hosts in over grown grass, leaf litter and low growing shrubs.  Ticks are most active in the early morning and early evening.  They tend to be less active in the heat of day.  Because ticks tend to dislike the heat, they are most active in shaded areas rather than direct sunlit areas.  They are more active on days after rain than during droughts.  You can easily find them walking up tall wet grasses to get out of the water stricken areas.   The Larvae are most active in fall (September-October).  The Nymphs are most active in summer (June- early September).  The Adult ticks are most active in Spring (March- early May) and Fall (September- early November).

“The Best Defense is a Good Offense.”

Before going outside, protect yourself.  Use a repellant.  A repellant containing DEET  is most effective.  Many people are concerned about the chemical DEET.  My opinion, and it strictly my opinion, is this:  I have been bitten by a tick(s) that infected me and changed my life drastically.  There is a chance I will die from this disease.   The use of a repellant containing DEET could have saved me from all this.  Now I have numerous medications – ALL CHEMICALS- going into my body to save my life.  I’m not afraid of protecting myself with a repellant.  Not only that, the repellant can be worn on the outside of the clothing.  It does not have to be sprayed or worn on the skin.

Wear light-colored clothing so hitch hiking, crawling ticks are easily noticed.  If you find a tick crawling on you, DO NOT simply brush it off, allowing it another chance to prey on someone else.  Destroy it.  DO NOT flush them down the toilet.   They can live in the water for a period of time.  I put my ‘captured’ ticks between two pieces of scotch tape and then tape it to a piece of paper, as shown below:

Deer Tick found on me after walking at the local dog park in 2005. It had not embedded itself yet.

After returning from a hike, playing in the leaves, working in the gardens,  or being in a possible tick infested area, perform a thorough tick check of your body.  Remove your clothes and place them in the clothes dryer.  Set the temperature on HIGH and press START!  Do not simply think that washing the clothes will destroy the ticks.  It won’t.  Again, they can live in the water.  The heat from the clothes dryer will kill them.  Check ALL parts of your body and look CLOSELY.  Remember, the nymph deer ticks are as small as the period at the end of this sentence.  Have someone examine your back and scalp for any hidden ticks.  I remember finding a tick in my belly button years ago.  These nasty vampires will  hide on you, embed themselves into your skin without you even feeling the bite, then  feed on your blood, all the while possibly infecting you with Lyme Disease and other Co-Infections.

Know the proper way to remove a tick if one has embedded itself into you,  someone you know or your pet.

Proper way to remove a tick

  • Use blunt curved tweezers or a thread.
  • Grasp the tick as close to the skin surface as possible and pull upward with a steady, even pressure.
  • Do not twist or jerk the tick because this may cause the mouth parts to detach and remain in the skin.
  • You should pull firmly enough to lift up the skin.
  • Hold this tension for 3 to 4 minutes and the tick will back out.
  • DO NOT squeeze, crush, or puncture the body of the tick because its fluids may contain bacteria.
  • If you have any concerns, put the tick in a plastic bag and freeze it. If you get sick you can take the dead tick with you when you see your provider.
  • Immediately wash your hands and the affected area with soap and water.

As I continue my research, I am finding  more and more insects are carriers of lyme disease and different bacterial infections that are very harmful, if not fatal to their hosts whether they be human or animal.  Mosquitos, Deer Flies, Horse Flies, Flees, Lice, almost all blood sucking insects can carry and transmit some very harmful diseases.  Educate yourself.  Protect yourself.  But don’t stop living.  We have this beautiful world…. ENJOY IT ~  Just watch out for the Vampires in the Gardens!

I refuse to live in a plastic bubble. My 'Bubble' is the outdoors being one with nature.

Living through Chemistry

Living through Chemistry is better than Not living at all

During the course of over six years, I was prescribed numerous medications as well as suggested supplements to ease my burden.  We wasted thousands of dollars on medications, doctor visits, and tests that were useless due to the fact all the doctors I was seeing  knew little to nothing about Lyme Disease and Co-Infections.

From the years 2004 to 2009, a well-respected rheumatologist was treating me for what he thought was Fibromyalgia and Restless Leg Syndrome, both assumed to have been “triggered” from the Lyme Disease in 2004.  He  had prescribed the majority of the medications.  The medications were merely putting a band-aide on my symptoms as well as causing some dangerous side effects.

I was on Mirapex for over a year.  I thought I had died and gone to heaven.  My pain slowly subsided and I was getting back to my old self again.  I was doing things I loved and finding many other interests!  However, I found I wasn’t sleeping much.  My mind was constantly whirling with thoughts of what I would do the next day.  Then, up before the crack of dawn and go, go, go. I would re-arrange rooms in the house only to find they ‘just weren’t right’ and re-arrange them the next day, moving all the furniture, pictures, etc.  I would go on shopping sprees and treasure hunts for big bargains.  I found myself enjoying scratch off lottery cards and the local casino.   Shortly after a year of being on Mirapex, my husband and I were watching television late at night.  A commercial came on.  It was a Mirapex commercial.  I said, “Hey, that’s the medication I am on.”  At the end of the commercial, in a very quick speaking, quiet voice we heard,  “Recently, serious side effects of obsessive compulsive disorder have been found.  If you experience excessive shopping, gambling, alcohol abusive,etc….Please notify your doctor immediately.”   Oh my gosh.  That was me.  My husband, Vince, and I looked at each other.  Well, there’s another medication down the drain!  Vince and I discussed the past year while on Mirapex finding that “YES” I was indeed experiencing OCD.  I immediately researched Mirapex on the internet.  I was amazed at what came up!  “Mirapex serious side effects!- People going bankrupt because of uncontrollable spending, gambling, etc. while taking Mirapex.”  The information was scary, but a wake up call indeed.  I called my rheumatologist the following morning notifying him that I would no longer be on that medication.  Mirapex is a dopamine agonist. It works by acting in place of dopamine, a natural substance in the brain that is needed to control movement.  Thank God, we saw that commercial.

My body quickly went back to being in constant pain. I continued on a low dose of anti depressant.  The anti depressant was supposed to help with the pain.  Honestly, for me, it did nothing for the pain.   I was then put on Lyrica.  Then Cymbalta.  Followed by Savella.  The list goes on. All  causing some sort of dangerous side effect and doing nothing to diminish the pain.

I decided to go off all my medications, including the anti depressant.  I was going to ‘cleanse’ my body for 3 months, and then see another doctor.  After the 3 months was up, I was a wreck.  Severe depression and horrific pain. However,  I was looking forward to visit with a new doctor.  I had heard positive things about her.  At first, I liked her.  I thought she was fairly thorough in her exams and questioning and discussions.   She encouraged me to go back on the anti depressant.  I was thankful she did.  Four weeks later, my mental health was a little bit better.  I saw her quite often.  Each time she would order more blood work.  Results came back as being low in potassium, magnesium, B12 and I was anemic- ALL SIGNS OF LYME DISEASE!  She tried to give me “Pep Talks” saying, “Debbie, you can not let Fybromyalgia run your life.”  Deep inside I could hear myself saying back to her…. “Easy for you to say,  you have no idea what I am dealing with here…and by the way I do  not believe it is simply Fybromyalgia!”  Finally, when my knowledge about Lyme Disease was spoken, she shut me out completely.  A blessing in disguise.  I mentioned this doctor in another post.  She is the doctor who told me, “You can’t have Lyme Disease, you live in Wisconsin.”   “Bye Bye” to yet another doctor.

In early summer of 2010, while I was on a waiting list to see the “Best of the Best” lyme docs in Wisconsin, I knew it was important for me to prepare my body for what was to come.  My immune system was very weak.  According to blood results, I was deficient in many things.  It was pertinent to get my ‘gut’ ready for the heavy-duty medications I would be put on to kill off the bacteria, therefore, probiotics were in order.  I researched, read books, and asked a lot of questions on internet forums and support groups for Lyme Disease.

To start off, I began taking Acidophilus, a probiotic.  This was to replenish the good bacteria in my intestinal tract.   I started taking prenatal vitamins.  I found the prenatal vitamins much easier on my stomach.  I also started increasing my daily doses of vitamin C and Magnesium and Alpha Lipoic Acid.  I drank aloe vera juice and olive leaf extract.  I was and still am a fan of Super Seed Beyond Fiber that not only helps the digestive system, but also has the important Omega 3 Fatty Acids.

In August, 2010, my new treatment plan with antibiotics for Chronic Lyme Disease began.  My doctor, Dr. ‘H,’ told me up front, “I will treat you like no other person.  That is because every BODY is different.  Every person responds differently to Chronic Lyme Disease and Co-Infections.  Your case is unique just as all lyme cases are unique.  Every person responds differently to medications.  We will work together to find what works best for YOU!  We will be switching medications throughout your treatment, using different ones to attack different issues.”   I asked, “Am I ever going to be cured?” ….. there was a pause.  Then he responded, “I will treat you for as long as need be to get rid of this disease.”  There was a sense of comfort knowing I wasn’t talking to another doctor who thought it was “All in My Head.”  However, there was also a sense of uncertainty.  Will I ever be cured?

For the first six weeks I was on the following treatment:

Clarithromyc – low dose of antibiotics working towards higher dosage. Daily

Nystatin– For yeast control. Daily

Nexium– To protect my stomach. Daily

Fluoxetine- Anti Depressant. Daily

Acidophilus- Daily (Quickly changed to a HIGH Potency Probiotic)

Cyclobenzaprine – For Muscle Spasms. As needed

Butal/APAP/CAF – For Migraines.  As needed

I altered some of my vitamins and supplements following Dr. Burrascano’s Guidelines.

Ester C – 3000mg  Daily.

Alpha Lipoic Acid – 600mg Daily.

Magnesium (Triple Magnesium Complex) 800mg Daily.

Essential Fatty Acids- I get through the Super Seed Beyond Fiber- Daily.

Prenatal Vitamin– Daily.

Vitamin D– now on a RX maintenance once a month.

After starting a low dose of antibiotics,  my belly quickly expanded to the size of a 6 month pregnancy.  I called my lyme doctor and mentioned my problem.  He asked if I was taking a probiotic.  I answered, “Yes” explaining  it was Acidophilus. He said my body was susceptible to yeast and with the antibiotics, I will need a much stronger probiotic, a HIGH Potency Probiotic.  My intestines had quickly filled up with yeast.  Off the antibiotics I went and onto an anti fungal until the yeast subsided.  I also started taking a stronger high potency probiotic.  I cut out all sugar from my diet and started a VERY LOW carb, lean, high protein diet with as many fresh vegetables I could eat!  NO ALCOHOL.  A lot of water and green tea.

On the morning of September 13, 2010, I could not believe my eyes.  What I thought to be another tiny freckle on my ankle the night before, was now an engorged deer tick.  My blurry eyes and shaky hands properly removed it, however, it fell to the ground.  I was upset with myself for not having a towel or sheet of sorts underneath my ankle while removing it.  I could not find the tick.  Within hours, the tick bite produced a bull’s eye rash.  I DID however, take a picture of the tick bite and rash.  I called my doctor.  He assured me I would be ok.  I was already on treatment for Lyme Disease.

Less than six weeks into treatment for Chronic Lyme Disease, I found another deer tick embedded in my ankle. Within hours after removing the tick, my ankle swelled up producing a bull's eye rash.

Later in September, 2010, I went back to see my Lyme Doctor.   My headaches were much worse.  The longest one lasting for 10 days.  I had experienced such severe migraines that my eyes would swell shut.  I broke out in small rashes on various parts of my body.   My fevers continued, mostly at night.  Sore throat and swollen glands, with drainage coming from the lymph nodes.  I was very dizzy.  I was experiencing, “HERXING,” a die off of the toxins and spirochetes in my body.  I was not alarmed.  I was familiar with this because of my treatment in 2004.  During treatment, I knew I would get much more sick before I got better. The treatment was indeed working, but we had a long road ahead.  My medications were somewhat altered.  The clarithromyc dosage was increased.  For the neck spasms traveling up into my head causing migraines I was put on a ‘cocktail’ of Diazepam and Buta/APAP/CAF- which finally provided some relief!

Over the past five months, my medications changed as my symptoms changed.  We found that as the lyme disease (spirochetes) were dying off, other symptoms were coming out stronger.  These are the co-infections that were NEVER addressed in my first round of treatment in 2004.

In November 2010, I was experiencing the following symptoms:  Blurry vision, shortness of breath, anxiety and panic attacks, extreme fatigue, coughing, night-time and early morning fevers, occasional lower pelvic pain, vomiting, ringing in my ears, short-term memory loss, very painful bones and joints, neck stiffness and migraines, and DEEP muscle pain in the larger muscles.  I had lost 14 pounds since I started treatment.  A positive sign.  Doc ‘H,’ believed we were also dealing with at least two co-infections;  Babesiosis and Bartonella.  However, he believed the route we should take is eliminate the Lyme spirochetes as best we can, then start attacking the co-infections.

Treatment changes:

Doxycycline – Daily.

Clarithromyc– Daily.

Zofran– For nausea and vomiting as needed

The end of December 2010, we started to attack one of the co-infections, Bartonella.  We knew the Lyme Disease was not completely out of my system, however, the treatment was indeed working.  The Bartonella was the strongest co-infection at this time that was ‘breaking through’ and showing its true colors.

Treatment changes:

Riphamin – Daily.

Doxycycline– Daily.

No more Clarithromyc

Mid January 2011.  I continued having the previous symptoms, however, new ones were developing as well.  Small, streak-like rashes were on my arms.  They would come and go without warning.  I was experiencing chest pain.  My right side was having bouts of numbness making it difficult to drive and/or walk.  My weight loss was now 20 pounds.   My call into Doc ‘H,’ confirmed that we were definitely dealing with co-infections now.  He reminded me that my health didn’t become “CHRONIC” overnight.  We have only just begun this part of the journey.  If it would have been diagnosed and treated properly in 2004, chances are,  I wouldn’t be dealing with it now.

The majority of the daily medications I have to take at this time... all because the medical community wouldn't listen the first time around in 2004.

Embrace each GOOD DAY….

"Embrace each GOOD DAY. They WILL be few and far between, but the memory of the GOOD DAYS will keep you strong as you fight this disease."

August 10, 2010 was the first day of a new life for me.

The morning of August 10, 2o1o, my husband, Vince, and I eagerly packed up our car with the last six  years of my medical records and notes.  A two-hour, one way road trip,  brought about excitement, uncertainty, and spiraling minds full of questions and concerns.  We were heading to Waupaca, Wisconsin to meet with my new doctor.  We had heard a lot about Dr. ‘H.’  “He is one of the best when it comes to Lyme Disease.”  “He is one of the smartest doctors we know.”  “He has helped a great deal of people suffering from Lyme Disease and Chronic Lyme Disease.”  “He helped me get my life back.”  That is all we needed to hear.  We were on our way!

I had been on a waiting list to see him.  Luckily, at the time, his waiting list wasn’t nearly as long as it is now.  I had made the decision NOT to waste my time, money or energy by visiting with any other doctors who were illiterate to Lyme Disease.  I would wait patiently for my scheduled appointment.  In the mean time, I would collect all my notes, medical transcripts and jot down all questions and concerns I had.

As we arrived to the small town of Waupaca, Wi., we quickly found his clinic.  A small, brick building shared with other town businesses.  A simple sign on the front of the building reading,  “H________ Clinic.”  We’re here!  A couple of deep breaths as we got out of the car, white notebook in hand.  We had no idea this would be the first day of a new life for me….for us.

This is My Notebook. It holds all my medical notes and transcripts from 2004 to present day.

Entering the small building, we followed a short, narrow staircase to the lower level.  We walked into what could have been mistaken for a hunting lodge of sorts.  Very simple.  Stuffed, mounted fish decorated the walls. I asked his assistant behind the desk, “Did he catch all of those?”  “Yep…he sure did!”  Pictures of elk, deer and other game animals found their place on the old paneled walls.  There was nothing fancy nor extravagant about Dr. ‘H’s’ Clinic.  However, what caught my attention were the numerous hand written letters and pictures drawn by children wallpapering the front desk.  All of them THANKING Dr. ‘H’ in one way or another.

Only three wobbly chairs in the tiny waiting room,  Vince and I settled down in two of the chairs.  It was a hot, humid day.  There wasn’t any air conditioning, nor a fan.  They did, however, have the back door open.  Looking out, it led to a deck overlooking a beautiful flowing river.  Wow.  His assistant said, “There are days I would like to throw a line out there and catch some dinner before I head home.  Isn’t it beautiful?”  Yes, indeed it is.

A door opened behind us.  Out walked a man, looking more like a patient than a doctor.  His assistant lead us to the exam room.  A few minutes later, the same man who was out in the lobby walked in.  Dressed in blue jeans, a worn out t-shirt, baseball cap and gold medals hanging around his neck, scruffy face and messy hair… ”  So, how can I help you today?”  I smiled, “Hi, Dr. ‘H’.”

He thoroughly asked questions.  I answered every question that he asked.  I had gone into this visit with more knowledge about my health issues than ever before.  I needed so desperately to find a doctor who took me seriously.  After a long, detailed discussion, all the while Vince keeping notes, he looked at me with deep frustration.  “You, indeed, have Chronic Lyme Disease.”  He was upset.  At first I thought he was frustrated with me, however, I soon began to realize that was not the case at all.  He was frustrated with the medical community who incorrectly treated me all these years.  He was frustrated with the insurance companies who refuse to pay for proper treatment for Chronic Lyme Disease.  This is not the first case he has seen like mine, nor will it be the last.

Before we discussed treatment, he looked me in the eyes and said, “You need to embrace each and every GOOD DAY as just that….a GOOD DAY.  They WILL be few and far between as you go through your treatment.  However, by embracing those good days, it will give you the much-needed strength and hope to get you through this.”  I remind myself of that EVERYDAY.

After discussing my treatment plan, we walked out of his office and breathed a sigh of relief.  I looked at Vince and said, “He believes me.  There IS hope.”   I sat down in the car, pulled the door shut and cried.

I was reminded that day of how important the saying is, “Don’t judge a book by its cover.”   Here was a man.  At first glance, before getting to know him, you might think he had just hiked out of the woods from a week-long hunting trip.  A simple man who loves the outdoors.  Loves to fish and hunt.  His office that might appear to some as  ‘run down and in desperate need of repair,’ compared to other doctor offices, I now found myself feeling very comfortable in.   He knew what was more important.  Not the ‘outside’ of things…but the insides of human beings.   Here was a man who took the time to gain the knowledge, has the strength and dedication to treat those of us with Chronic Lyme Disease that other doctors turned a blind eye to.

Embrace each Good Day, Deb…. Embrace!