Lets talk money-why lyme patients fundraise

First, know this, in the Lyme world patients don't go to the doctor and then get billed like when you go to the emergency room.  Lymies can't make payments, can't save the bills for later, can't ignore the bills are there.  These things are only possible when visiting medical professionals in the regular world.  In Lyme World we don't get seen, don't get tests done, don't get medicine without cash up front.

The first few visits to a Lyme Literate Doctor are the most expensive.  The appointments are longer and you have to pay for testing.  Not only this, most of us have to pay to travel.

My first visit, not including costs of travel, $750.
My testing, $1100
My second visit, $500

Then like other Lymies, it's time to begin treatment.
Monthly appointments, $250
Monthly medicine copays, $200
Probiotics and other supplements, $200

Let me add that up for you, $650 a month.  That's only as long as I have insurance.  I won't even begin to discuss medicine costs not covered by insurance.  Ok, maybe I will.  The two meds pictured below are $4000 total if I didn't have insurance.

That's not all.  Lymies often are unable to work.  The most important part to healing is resting and reducing stress.  Physical exertion, stress, and over stimulation can cause worsening symptoms.  Along with this treatment doesn't take months, it takes YEARS!

If that's not enough, very often lyme is found in more then one family member.  Although I am trying to focus on me when I blog, I've warned my family that I will be mentioning them at times.  It is so important for our society to understand the struggles of this disease!

Lyme can be passed on through pregnancy and nursing.  Both of my daughters have multiple symptoms that they have had their entire lives and that are clear indicators of them catching lyme as fetuses. I have spent my years mothering teaching them pain and discomfort is normal and it was their jobs to learn to function despite it.  How would I know any different?  I have been suffering from symptoms my whole life.  They would complain of the same symptoms I had.  I thought everyone felt this way and that we just had to toughen up.  Sad, Sad, Sad, it is inexcusable that they suffer even a little.  I've done a good job, a lot of you have no idea that these beautiful ladies have issues with pain, fatigue, and other symptoms associated with lyme.  So, let's talk the cost of that.  We won't include costs of traveling. 

Initial visit with pediatric lyme litterate doctor, $950x2

Testing:$1000x2

Follow up visits every other month:,$350x2

We will underestimate copays on meds, they aren't as sick as I am, $75x2 

Probiotics and Supplements: $200x2

Feeling overwhelmed yet?  I'm still not done.  The verdict is out as to whether or not lyme is an STD, BUT there is evidence pointing in that direction and some lyme docs will tell you it is.  Either way, the process of searching out a diagnosis for me led to us looking at my husband and many of the symptoms he is plagued with.  His list is ALMOST as long as mine.  In fact, he is where I was at five years ago when looking at symptoms.  We lucked out and found a llmd close to home who takes insurance.  I'm not seeing this doctor because he is unable to treat as aggressively as I need.  He needs to tote the line because he bills insurance and we live in a state that doesn't protect lyme literate doctors from having insurance companies bring them before the medical review board.   We are hoping that we have caught things early enough that a less aggressive approach will be effective.  

So, we will estimate copays for meds and doctors appointments at $100 a month.  

Testing was $250 (we did just the basic lyme test. Any co-infections will be treated based on symptoms)

Probiotics and supplements, $200

Ok, it's time to add it up.  The cost of our family to get life saving treatment is, $1,850 a month.  That is after a down payment (testing and initial appointments) of: $6,400!

This isn't just my family.  This is many families in our community.  So many parents are selling of possessions, downsizing their homes, working multiple jobs, just to keep their children and spouses ALIVE.

This is why we fund-raise.  

Every year our taekwondo studio raises money for a cause.  I bet you can guess what we are raising money for this year!  Not just for my family, but we will help a couple of other families in our community who have multiple family members fighting lyme.  We will do this not just this year, BUT EVERY YEAR!  There are so many great causes, but for me this is personal.  Our government can pay for so many things: welfare, foodstanps, housing, insurance, drug treatment, therapy....I'm not knocking this.  I won't lie, I will be utilizing some of these resources.  My issue is I am guessing many of our society members who are to sick to work for various reasons , have lyme.  Our government is denying chronic lyme exists and states lyme is easy to diagnosis and easy to treat.  I'm living proof of the opposite.  I have been told multiple times in the past twenty years that I don't have lyme.  After shelling out tons of cash I finally get a test back that says I unequivocally have lyme AND coinfections.  There are hundreds of thousands of individuals who know differently then what our government wants us to believe.

So, when you see posts and blogs and fliers concerning lyme fundraisers, give a few dollars.

  The last great thing I want to share with you about lymies is that we ALWAYS GIVE BACK.  We don't just take and take, we turn around and help each other because we are the only ones who have each others back.  Support us, because you may very well find yourself in our shoes some day in the future.  I promise, we will help you.

from despair to elation ~ how I feel now that I have a positive western blot

I can't even begin to express the joy I feel right now.  It was like a weight was lifted off my chest and I could breath again.  Yes, I already had the lyme diagnosis based on symptoms.  Yes, I had proof of the diagnosis based on how I responded to antibiotics.  For what ever reason, having a piece of paper that says POSITIVE gives me a validation that I didn't know I needed.

All the headaches, the fatigue, the lack of motivation, the crazy changing emotions,  the ditziness...cough..I mean the lack of focus, the concentration and memory issues, the difficulty working out, the muscle fatigue and weakness, the dizziness, the vertigo, the sensitivities......I guess you get the point.  There was a legitimate reason as to why I felt this way.

My LLMD (lyme litterate doc) thinks I was infected in childhood.  In the back of my head I thought that as well.  I just didn't say that because I knew for sure I had a funky rash along with joint pain and flu like symptoms in 1993.  If I go back further in my childhood my third grade year stands out in my head.  That was when my migraines started, migraines that originated from neck pain.  In fact, back then the doctor didn't think they were migraines.  They didn't present that way.  The headaches were unique and painful.  So painful I ended up hospitalized at the age of 9.  After a few days of tests I was sent to a psychiatrist.  The psychiatrists didn't find anything of significance wrong with me.  My mom started sending me to a chiropractor after that.  I was so tired of being drug to appointments I just said that the chiropractor was helping.  He may have helped a little, it's hard to tell.  Also at the age of 8 or 9 I had a lot of knee pain.  I had fluid under my knee cap, and my knees would often lock up on me.  Of course all these symptoms would come and go.  At that young age I felt judged.  I felt like others thought I was being a hypochondriac.  Actually as an adult, I have described myself in just that way when talking about how I was when I was young.  I felt so badly about over reacting to these symptoms that I have been less then sympathetic when my own children have complained of various ailments.  I didn't want them to be "hypochondriacs" like I was.  HA! Have I been wrong!  I'm looking at everything differently now.

When my LLMD told me my test results I felt many feelings in just a few seconds.  I cheered with excitement and then immediately started crying, I hate crying so that quickly turned to anger.  Right now I am just full of gratitude.  After all these years of tests for various ailments coming back negative I was finally awarded with a positive test result.  My first positive test felt like the first time I got an A on a difficult subject.  I felt like I finally was an over achiever in the sickness world!  How many times have I gone to the ER for various pain to be sent home with a shrug of the shoulders.  YAY! I HAVE A DISEASE!

The other feelings are there under the surface.  How sad is it that I don't even know what it feels like to be healthy? My husband and children have never known me healthy.  Heck, I don't even know myself healthy!  I've been sick for almost thirty years!  I'm not angry at doctors from my early childhood.  Lyme was only discovered a few years before I became ill.  I am angry about it not being discovered around the time they realized my symptoms COULD be due to lyme.  You know, around 1994 when they first tested me for it.  I can be angry, but honestly, the doctors back then were only doing what the CDC and IDSA recommended.  Unfortunately, the doctors around here are STILL doing what the IDSA recommends.  We need to change those recommendations!

So, right now I will relish the fact that someday in the future I may be able to live the way healthy people live.  I may be able to do things with my family without pain.  I may be able to train and be a better martial artist. I may be able to be more productive in all areas of my life.  I may not be scatter brained any more!  I hope you will all still love me when some of the quirkiness I'm known for is gone!

My LLMD is very optimistic that I will recover at a fast pace.  (fast to lyme standards is still months or years).  I have responded beautifully to the amoxicillian I have been on.  Now it's time for the big guns to be put on board!  I can't wait to start loading on the heavy meds!  I will get through the side affects and HERXING because of my desire to discover what HEALTHY feels like!

I May Not Be Happy, But I Still Have Peace

I've been feeling pretty down the past couple of days.  It may be another way the lyme is manifesting itself as my symptoms slowly worsen.  Or it may be that I'm just down because I have been stuck in my house and away from my life for three months.  Either way, I'm pretty mopey.

I contemplated not blogging, but if I am sharing my experiences I wouldn't be honest if I only discussed things positively.  I do feel sad sometimes, and it's ok that I feel sad.  God created all of our emotions.

Sad or not, I still have hope.  My hope is based on my belief that no matter what, God's will is perfect and all though things that happen to me cause sadness, I still have a peace that God will take care of me.

I have so much to lose.  I feel like I'm dangling on a string of uncertainty.  My hope isn't that God will prevent me from losing what I value, but instead my hope is that if I do lose what I'm holding on to God has something better planned.  I don't mean bigger, I mean better.  For me better is simply fulfilling God's purpose for my life.

Still, right now I feel down.  I tried to go watch my daughter cheer at a basket ball game, but the pain from sitting on the bleachers in the cold gym made me nauseous.  My poor mother-in-law watched the game alone as I spent the game trying not to pass out or throw up. I was with her in body but not in spirit.  Getting out of the building was a challenge.  I decided my mother-in-law and I are a dangerous combination.  We are both at high risk of falling, and neither of us could help the other get around.

At the game I was reminded of what I don't have right now.  I watched as parents socialized and cheered.  I feel like I've been removed from life and am watching, as an outsider, everyone else go on living.  I am stuck in this illness, being left behind as everyone else moves forward.

I also have fear.  Here I am, so sick I can barely meet my most basic needs, and our government denies that my illness even exists.  Laws are slowly changing but it isn't happening fast enough to help me right now.  I have to pay out of pocket for my doctor appointments and needed treatment.  When I feel over come with fear I meditate on how God has supplied my needs so far.  Thanks to donations I have now been able to pay for my first two, most expensive donations.  My bills are up to date as of November.  And the generosity of friends and family helping to meet our basic needs is noted and appreciated.  I promise, when I am well I will pay it forward.

I do plan on getting well.  I just don't know how long it will take or how we will pay for it.  I hate uncertainty.  I know I am growing in my faith through this.  I know God is working in this situation.   I just wish I knew what the plan was.  The uncertainty of whether or not I will be better before my disability runs out is driving me nuts.  I want to plan and be a good steward of what I have but I don't know what I'm suppose to do.

Every morning, I have a quiet time with God.  I pray that He will guide my steps for just today.  I simply say, "God, help me to be able to focus on whatever task it is you want me to accomplish.  Please give me wisdom for how to utilize my time.  Let me know what it is you what me to do TODAY"

That's all I can do.  If I need to sleep...I sleep.  If I am blessed with a relief from my brain fog I try to get some work done.  If my body is having a good day I do some light housework.  If I am feeling motivated to blog, email, text, network....that's what I do.

So, I've laid my soul out there.  Tomorrow I may feel happy and energetic.  Who knows how I will feel from moment to moment.  This is a crazy disease.  I can't plan what I'm going to do in a couple of hours let alone plan for the next day.

The one thing I can, and will, do is to continue to educate everyone whom I have contact with that there are hundreds of thousands of people in our country just like me.  We are all suffering while our government is ignoring us.

a pollutant you may not have thought about

One of the top things Lyme patients spend time focusing on is detoxing. As you enter the Lyme world you are quick to learn the importance of ridding your body of unwanted substances.  We stop eating gluten and sugar.  We worry about mold and heavy metal toxins in our bodies.  There are many reasons for this, but that isn't the focus of my blog today.

I am noticing that there is little discussion in the lyme world on EMF's and how over exposure can cause headaches, pain,  increase the risk for cancer, and cause an abundance of free radicals.

Even before I knew I had lyme I learned that by protecting myself from EMF exposure I had a decrease in symptoms.  

 The National Council of Radiation Protection and Measurement declared that 2 mG is the maximum amount of EMFs that the human body can handle at any one exposure. 

You probably think of this when it comes to microwave ovens that put out 200mg's, but did you know that the blender you use to make those healthy smoothies puts out 220mg's?  Your cell phone that you probably spend a lot of time on staying connected to the world puts out 100mg's.  Your computer puts out 20 and your tablet puts out 10, still well above the recommended 2mgs. 

"When exposed to man-made frequencies, our body absorbs and stores such energy fields. These are unnatural and chaotic electromagnetic fields such as microwaves. It can weaken our immune system and ultimately lead to illness. 

 http://www.caribarena.com/antigua/mobile/emf-exposure/97301-emf-effects-on-your-body-cells.html#ixzz2TZVmvQJh" ~JUUVA fact sheet

In this electrical age we are surrounded by electrical currents that our bodies are absorbing.

Think about it, our bodies are made up mostly of water, we are a perfect conductor for electricity.  If you want to go further, to the molecular level, we are made up of atoms, so not only do we conduct electricity, we are basically an electrically charged being!  

We want to keep our body in balance.  The electrical appliances we surround ourselves with put out positive ions.  Positive ions are BAD, they're free radicals and they harm our bodies.  

Here's a list of the harm they can cause:

• constrict blood vessels
• increase blood pressure
• increase blood acidity
• weaken bones
• suppress urination
• decrease nitrogen in urine
• make breathing more difficult
• increase pulse rate
• impair heart function
• prolong physical recovery
• tense and strain the nervous system
• suppress and delay growth

Are you ready to go live in the middle of the woods yet?  It might be a good idea, the woods will have an abundance of negative ions.  Negative ions are GOOD for you!  You can find them in nature, at the ocean, after a thunderstorm, next to a waterfall......in your home you can find negative ions in your hot shower! Negative ions help neutralize positive ions. 

Negative ions:

• Dilate blood vessels
• stabilize blood pressure
• increase blood alkalinity
• strengthen bones
• promote urination
• increase nitrogen in urine
• stabilize respiration
• decrease pulse rate
• enhance heart function
• speed physical recovery
• calm and relax nerves
• promote healthy growth

 Don't worry, you don't have to move to the wilderness.  I have found a way to protect myself and my family.  

All of our dangerous devices have a cation shield.  So when I stand in front of my blender, making a super healthy smoothie, I'm not worried about the EMF's being produced.   My father-in-law put one on his cell phone, which he carries in his pants pocket, and discovered relief from leg pain that he had been suffering from.  I no longer get headaches when I'm using my laptop.  

I also wear an anion emitter.  The one I use is from a company called JUUVA.  JUUVA's emitter is the strongest on the market, putting out 2,000 negative ions per linear inch, a total of 10,000 negative ions.  Juuva's emitter is also the best priced on the market.  Now, you can get emitters cheap on amazon, I tried one, they don't work nearly as well.  My symptoms are severe, in fact on a bad day I use two or three emitters.  I no longer take pain meds, and only take a muscle relaxer occasionally.  Not only does this dramatically decrease my headaches, and my muscle pain, but it provides me energy and an over all sense of well being.  Don't get me wrong, I still have bad days where I literally feel like I'm dying, but I don't think my bad days are as bad as some of the days I see others in the lyme community talking about.  Honestly, most days I feel relatively good, my complaint is that my body doesn't work.  Nothing is more frustrating then feeling like doing things, but not being able to stand on my two feet long enough to accomplish anything.  Negative Ions aren't a cure for lyme, but they sure do help!

Yes, I do distribute JUUVA products.  So, don't take my word for it, listen to Myrtle. Myrtle is a sweet lady who is 104 years old and feels she has been left on this earth to help people. Take a minute to listen to this sweet lady from New Hampshire.  

a friends perspective

      My friend Amanda sent me something she wrote.  She said it was on her mind and she felt she needed to write it down.  She sent it to me to use however I saw fit.  I thought it would be a nice guest blog.  I don't think about how others are viewing me and this situation.  My family and I consider this our new normal.

            I have known Holly Lounder for 12 years.  Our families both started going to Family Bible Church around the same time, and we both had little girls in the nursery.  Our girls became fast friends, and since they spent a lot of time together when they were little, so did we parents.  Over the years of church functions, birthday parties, and general get-togethers, we all became friends.

            We really got to know both Scott and Holly much better after they opened their karate school and we signed our daughter up for classes.  Sure, around that same time, we worked together as Sunday School teachers for the middle schoolers, but Holly’s migraines kept her out of commission most weeks.  As Sherri got more involved in tae kwon do, she got her dad to start as well.  During this time, I would help out by taking the three Lounder children out of the studio a few hours every week, since they were all “stuck” there 4-5 hours a day, 4-5 days a week.  As the kids grew, and I started training as well, both my husband and I started helping out more with the TKD school stuff.  There were times when Holly couldn’t teach because her headaches were too bad, or she was too tired.  Then there was always the illness or injury that happened when she was about ready to do her next test.  Something always seemed to slow down her achievements more than she liked.

            Even still, the one thing that stands out to me is how much on the go Holly always was.  Besides running the school, very often she was holding down a job of her own or homeschooling her children.  There were tournaments every other month, or so it seemed.  She would travel for training with her instructor.  She was always trying to make it to the after school activities that her kids participated in.  There were the extra events for the TKD school, such as parties, sleepovers, or Kidz’n’Power training at least once a month.  And even when she was sitting, she was doing paperwork for the TKD school.  Sometimes, she had so much stuff to do, she’d task some of it to me - the joke being that I was her brain.

            The Lounders have reached out to the community through their TKD school.  Most years they can be seen demonstrating their skills in the Ellsworth Christmas parade.  Some years, they “show off” at Relay for Life or Autumn Gold Days.  They have started a yearly recital that supports a different local cause each year.  They teach kids not to be victims.  They have focused on bully prevention.  Each demonstration shows several different scenarios where the small person has to get away from a bigger “bad guy.”  They have helped improve the confidence, self-esteem, and self-control in many kids (and adults) in the area.

            I stopped training in TKD about 2 years ago now.  And because of how busy life gets, I lost touch with Holly.  Sure, I’d scroll through Facebook and see her posts, comment on them sometimes.  We’d chat occasionally, always planning on getting together sometime soon.  But, again, life gets busy.  Then I find out she’s been sick - sick enough that she’s spent a few days in the hospital.  No one knows what’s wrong with her, and they send her home, unable to work because of how sick she is. 

            That’s when I decide that I’m going to help out whenever and however I can.  It turns out that one visit a week is what is working right now.  In the beginning, we were doing paperwork, testing invitations, searching for papers....  I could tell that Holly wasn’t up to par, her usual self.  And what really was frustrating for me those first few weeks was that I knew how upsetting it was for her not to be able to do anything.  In the beginning, she did make it downstairs; but I could tell, coming back up after the little work we did down there wore her out.  Sometimes we just sit and visit together.  A few visits, talking would trigger “tyrannosaurus arms.”  Some visits, she tells me she has slept all day, only waking up because I was coming over and she had something to look forward to.  She recently started her new treatment, and that has taken an obvious toll on her.  Working on paperwork is taxing enough that it almost starts seizures.  Watching tv, it’s sometimes hard for her to follow what is going on.  By the end of my visits I can tell she’s ready to go back to sleep again.

            I don’t really know the purpose of writing this all down.  Holly’s been keeping her own blog of what’s going on, and that’s from her point of view.  I’m an outsider who has a different point of view, and really hasn’t been around all that much.  But I can see there’s something wrong with what’s going on with her.  She finally got a diagnosis of Lyme about a month ago.  With treatment, things seem to be going downhill right now.  It is so frustrating to see someone so sick, with the doctors in the area not able to help, and insurance not recognizing she really has a problem.  No treatment is covered, everything is out of pocket.