It's a Marathon not a Sprint ~ Living and Loving Life with Lyme

Wow, I had some really rough days!  At first I thought my medicine wasn't working because I wasn't experiencing a change in symptoms, good or bad.

  And then it hit...........................................

I quickly learned first hand what it meant to Herx.  I was having focal seizures multiple times a day.  I was unable to leave the house.  The simple act of riding in the car was torturous.  I would pull a thick hat down over my eyes because sunglasses weren't enough to block out the sun which hurt my eyes in a way I had never before experienced.  Even with my eyes covered, the motion of the vehicle was something I couldn't tolerate.  I have never experienced motion sickness to this extent, and I hope I never feel that way again. Sound and movement were also difficult to handle.  I couldn't block noise out, and everything felt louder then I'm sure it was.  There were days I hid in my room just so I could control the environment for light and sound.  I couldn't read.  I couldn't watch tv.  My only outlet was brief excursions to facebook from my phone.

The most severe symptom was my startle reflex being out of control. Sometimes just one of my daughters walking down the hall into my line of vision would cause me to scream as if they had jumped out of the dark to scare me.  I think they were often just as startled by my screaming as I was by their sudden appearance. The slightest unexpected noise would trigger a seizure.  I love my family, we can make a joke out of anything.  My daughter would burp and I would respond with a focal seizure.  During these types of seizures you are aware of what is going on, you just don't have control over what your body is doing.  With me, I make a yelling noise and my arms fling up over my head.  Only in my house would my children start laughing at this, and of course, as I'm seizing, I'm snickering as well.  I'm not sure if my dog was worried or thought I was playing.  He would jump in my lap and dig at my hand trying to get me to respond.  Sometimes my seizures were so bad that afterwards I would be unable to speak or move.  I would just stare blankly at the wall wondering when I would feel normal again.

This lasted for about a month, then something wonderful happened.  I realized I was beginning to feel better.  I would have a day, or a couple of days where I felt like doing things.  Granted, I was physically unable to do anything, but just having the desire to be productive was a huge improvement.  Gradually, my ability to watch tv returned.  I spent a week watching netflix all day.  Then, I found I could get on my laptop for brief periods of time.  I began this years book keeping. I placed ATA orders.  I worked on class plans and promotional projects.  Last week I decided to attempt to read a book.  I haven't been able to do this since August.  I have read six books this past week.

All of this is great, right?!  Yes and no, the difficult part for me now is that I am impatient to do more.  All of my good days are equally matched by bad days.  No, not as bad as when I was herxing, but still bad enough to make me not feel like getting out of bed.  Still bad enough that I was to tired to sit up straight, let alone do anything productive.  Mornings are the worse.  Thankfully my afternoons and evenings are usually an improvement.  My husband is currently in the difficult part of treatment and hasn't felt able to teach taekwondo.  I have been able to manage to get downstairs to our studio and teach a class or two from a chair.  Sometimes I had to rest all day just to have the energy to do that, but that's ok.  The brief hour I'm teaching is an hour when I feel like I am my old self.  I hang on to the memory of that hour to help me get through the days that I can't get out of bed.

I'm afraid I am in the long and difficult part of this journey.  The part where I have to remember I will get well.  I am alert enough to want to function in life like I use to.  I can envision myself getting up and folding laundry.  I can envision myself running errands downtown.  I can envision myself helping out at my daughters school.  Unfortunately, when I try to make my body do what my mind is envisioning it doing, I am quickly reminded that I'm home on disability for a reason.  Sometimes the joy of being able to walk further distances then I was able to a few weeks ago isn't enough for me.  I want more.

So here's the truth.  I'm lonely.  I'm bored.  I'm frustrated with things from feeling trapped in my home to knowing how much weight I'm gaining.  That could be a whole blog in itself!  Geesh, when I do get an opportunity to leave the house, none of my clothes fit.  Facebook use to help me feel like I was part of the world, but lately it is just a painful reminder that everyone's lives are going on while I'm stuck in this rut.

The worst part of this illness is there is no time line.  I can make goals, but I have little control over whether or not I will meet those goals. I'd like to be out and about by summer.  I'd like to return to work next fall.  Realistically, I may have to go another whole year of this before I am able to even begin to do the things I want to do.  I am hopeful, I need hope or I'd go crazy.  The truth is I AM improving.  I am improving surprisingly fast.  As long as I don't plateau functioning by summer may actually happen.  There is just no way to know.

So, I hang on to small milestones.

It was a joy on Thursday when I had an appointment with my primary care physician.  She hadn't seen me since I started treatment. I was able to walk into the office, sit up straight in a chair, and have a conversation without uncontrolled muscle movements.  She was ecstatic!   For her, not seeing me for almost three months, the change was HUGE!  I realized how far I had come so far in my recovery.  It helped me not to be down on myself for having a week where I couldn't do housework because I needed to save my energy for teaching.  Three months ago I couldn't even get down my stairs.

So, it's a marathon, not a sprint and I have the endurance needed to win this race.

Lyme Rage~Anger over the Treatment of Lyme Patients

Sometimes when you have lyme you are prone to sudden rages that seem to have no cause.  This phenomena is called "Lyme Rage".  Some of you have experienced this with yourself or someone you love.  The title of my blog isn't about this definition, instead I used this common term in the Lyme Community to set the stage for what I really am feeling led to write about.

I am enraged at the treatment lyme patients receive from the people who are suppose to care for them the most.  I am enraged at the stubborn and arrogant attitudes from many in the medical profession, who like blind mice, follow the IDSA with no independent thought of their own, refusing to do the research and ask the questions with an open mind, willing to HEAR the answers.  Then and only then can someone make an informed choice as to what side of the fence to stand on.

You may say to me, "I'm sure doctors do that".  Yeah, I thought that too, that's why I have been sick for so long.  I blindly, unquestionably, trusted everything my doctors told me.  Even last summer, when friends started trying to point me in the direction of lyme, I simply accepted my doctor's answers and didn't research it myself.  It wasn't until I was unable to walk and having seizures, that I became desperate enough to look at the possibility of lyme.  Especially when I was sent home from the hospital told, "we don't know what is wrong, sometimes we can't figure it out", and when the neurologist said, "There is nothing wrong with you".

OH REALLY?

After having MONTHS of sitting around my house, I have done my homework.  I am SHOCKED at how uneducated our medical community is on this topic.  They strongly state chronic lyme doesn't exist, it's easy to test and easy to treat.  They say this, and then give out information that is totally wrong, even wrong according to the CDC.  Multiple doctors told me the ELISA test was accurate.  WRONG! The CDC says that lyme is a clinical diagnosis.  Positive tests are only needed for reporting to gather statistical information. They are not intended for diagnosis.  Despite the inaccurate ELISA tests, doctors won't look further into a possible lyme diagnosis if that test comes back negative.  It doesn't matter what your symptoms are, it doesn't matter if you have ruled out other diagnoses through testing,  negative ELISA means no lyme.

No doctor ever thought to give me the Western Blot.  They don't give the Western Blot test unless the ELISA comes back positive.  The western blot gives more information for the doctor to use to help diagnose lyme.  It still isn't accurate, but it gives more specific information.  I'm lucky, when I finally got my Western Blot done, it came back glaringly positive.  I already had been given the diagnosis of lyme based on clinical observation, but now that I have the positive Western Blot, I feel I can be a huge advocate when discussing the existence of chronic lyme, and the benefits of long term antibiotic treatment.  NO ONE, can dispute I have lyme.  I have the VERY POSITIVE test, I have more then enough clinical symptoms, and I have had enough testing to rule out everything else.


So yeah, I'm angry.

As many of you know, WABI featured my husband and I in a story about lyme.  Since then I have experienced the negative back lash that many "lymies" talk about, but I had yet to go through myself.

I'm curious how anyone, has the right, or knowledge, to tell someone who's ill with lyme, that it isn't real, or that it's all in their heads.  I am shocked and appalled at the behavior of friends and family of lyme patients, who discredit or ignore their supposed loved one.   Many lyme patients handle this by not telling anyone what their diagnosis is, and by hiding their symptoms.  Not, me, I have a strong voice, and I will use it!  The more you push against me the more I will push back when it comes to this particular topic.

Anger isn't always bad.  It's ok to be angry over actions of injustice.  It's what you do with your anger that determines if it is a positive or negative element in your life.

So, I am going to finish this blog, by refuting all of you who have said I don't have lyme, there is nothing wrong with me, it's all in my head, I've been misdiagnosed, I'm grasping at straws............

As I stated above, there is no refuting my diagnosis, even the CDC acknowledges it.  I'm not going to tackle that argument here.  Be advised, you DON'T need a positive lyme test to be diagnosed with lyme.  I was diagnosed based on symptoms well before my blood work came back.  Many people test false negative.  I don't want to discuss false positives.  Any discussion of that and I simply will point you to the CDC's diagnostic criteria.  No argument there.

I am going to discuss long term antibiotic treatment.
Where is the common sense in stopping treatment when the patient is responding but not completely well yet?  How does that make sense?

My insurance only paid for one month of my most needed antibiotic.  That is what the IDSA guidelines suggest, so the insurance can justify refusing payment.  Here's the dig, if one month is all that's needed, why am I, three months into treatment, seeing significant improvement?  I'm, once again, lucky. (plus I have one of the best llmd's on the east coast). If I had stopped my medicine after one month, I'd still be bed ridden, I'd still be having seizures, it's not an exaggeration to state that my life was at risk.  So,I've been paying for my meds out of pocket, I'm more alert and awake, I'm up and around doing light housework, and best of all, I'M CURRENTLY NOT USING MY WHEELCHAIR!

I'm not completely better, of course.  I still fatigue easily, I have trouble out in public due to sensory overload, and I still have joint and muscle pain.  So, do you think I should stop treatment or should I keep spending my own money on meds to see if I continue to improve?!  Mainstream doctors would STILL tell me, despite the evidence, that I've been on antibiotics to long, or that my recovery is psychosomatic.  Use your imagination as to what my response to that is!

So, here is what I have to say to those of you who have ignored or discredited someone who has lyme, "SHAME ON YOU"!  This is slowly become a heated political issue, and in twenty years, when this is resolved, how will you feel when you look back and remember how you treated or negatively talked about someone who has lyme. I only hope that you never have to experience this horrible illness yourself.  Unfortunately, even the CDC statistics show that lyme is a growing epidemic, worse then any other vector born illness.  This means that you will, one day, experience this disease up close and personal whether you want to acknowledge it now or not.

Since when do people blindly accept what our government says?  We, as citizens, have an obligation to be diligent, and to keep our representatives in check. We voted them in, we can vote them out.  They are in government to do the will of the people.  It is irresponsible and lazy to blindly follow whatever our government says.

Lastly, it shouldn't matter what the diagnosis is, you should be supporting those you know who are ill no matter what the cause. All you have to do is say, "I support YOU, I just can't support the diagnosis."  Once this statement is made, you should still BE THERE for your friend or family member.  Ignoring them is a horrible thing to do.  Don't think they don't notice, they do.  I will tell you I am very aware of the friends who have ignored me and my illness.  It doesn't matter if you agree with my diagnosis or not, I still was unable to walk, I was still having seizures, I am still unable to work or participate in life.  The only reason to ignore me would be if you thought I was faking it.  If that's what you think then you don't know me at all.  Bottom line, it doesn't matter what the illness is, if your loved one is suffering then you should be there for them.  End of Story.

If you are interested in where many of our representative are on this debate, read this petition and the information in it.  If you choose not to read it, then you are choosing ignorance.
http://www.change.org/petitions/the-u-s-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf?share_id=ByifDHrMlm&utm_campaign=share_button_action_box&utm_medium=facebook&utm_source=share_petition