...White Matter/Part II: Concussed? & Neurological Haze

ENTRY #4 -
Sept. 24, 2017

Having attended a sports assembly recently,
Where concussions were discussed,
I recalled an observation that my friend, Denise Clifford, had made:
That my symptoms sounded like those of a concussion.
Wow.
The assembly reiterated the symptoms.
They are remarkably similar to many of the unresolved symptoms
That I had for so long as part of my Persistent Lyme:
Fatigue,
Slurred Speech,
Incoherence,
Headache,
Pressure In Head,
Memory Loss,
Disorientation,
Confusion,
Ringing Ears,
Vertigo,
Sensitivity to Light,
Nausea.
The only thing I didn't do was throw up.
But, then, I don't really throw up -
Will typically faint before I will throw up.
I realize that is not the best approach...it is what it is.

The slurred speech and incoherence
Were probably the symptoms that were the least like those
Of a person
With an impact-induced trauma
Which results in a concussion of the brain.
But it was still there:
Twisting my words around,
Slowly, as I would try -
And occasionally still do -
To say what I was/am trying to say.
All of the other symptoms were pervasive -
For many months.

So what does it mean?
Is this part of the many things
That are eluding so many medical professionals?:
The impact of the neurological damage done...
Even when I was diagnosed and treated in a timely manner,
It wasn't enough.
So what else could have been done?
What else needs to be done?
What else needs to be known?

NEUROLOGICAL LYME?

A writing follows
That I’d typed from a recording I’d made on my phone Jan. 14, 2016
(Six months since onset of Lyme symptoms and Lyme diagnosis),
Outside of an acupuncture appointment
At Good Life Acupuncture and Holistic Health in West Bridgewater, MA.
It turned out to be the start of the second journal
About all of the confounding complexities related to Lyme:

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

Lying On the Table

Neurological Haze

Hyper sensitive to sound after a day with too much talking...
Met with Dean Wile about ...
Bees,
Gardening,
Terra Cura,
Permaculture,
Town politics,
The schools...
Showed him our grounds and gardening areas...
Talked an hour or more...
Sat out at the back picnic table in the cold - But in the sun.
I told him I’d have to nap afterwards...
I was able to talk animatedly with him –
With energy -  because of similar interests and passions.
But I knew it would do me in, more or less.

Had had lunch with Laura....
And her
(heavy sigh - searching for name)
Twin sister...Jen
(Who I know even better - friends for years!).

Too much talking.
Lots on the computer before that -
The white light
(Like the screen now, as I’m typing this)....
For the community gardens I’m helping to start through the Y in town -
A working group meeting next week.

SO, I get to the end of the day.
And I did not end up taking a nap as I told Dean I’d do -
Hung laundry and other chores.  

I got to acupuncture,
And Janet was running late,
Talking with the landlord -
Cause they’re expanding her office.
(Thank God/dess!
Cause they might have a Lyme clinic).
And I’m sitting there
With my sunglasses on inside -
Had to figure out which way to sit -
Cause the lights in her office entrance are just so piercing, visually -
Lights I used to love
Like candle light, and Christmas tree lights -
Can’t look at directly now). 
I’m looking at the carpet,
And I’m wondering if it’s the carpet design that’s making my eyes go all ‘wiggy’:
Flickering,
Like lights all over the place -
Like tiny little stars. 
So I’d look elsewhere to see if it was still happening
(‘cause it has, especially waves of light with my eyes closed). 
But I was looking at very light colored walls and ceiling -
So too hard to tell.

I went to lie down on the shiatsu mat in one of the rooms -
So that I could rest while I waited for her.
When she came back,
Her voice was sounding so distant as she talked to me -
As I climbed up to lie down on the table.
“You’re going to be a survivor of this someday -
And be talking about it to people”.
(Heavy sigh from me - seemed like a lot of work.) 
And she was so distant sounding -
Standing right next to me. 
She put the needles in,
And I felt an extra prick
Next to where she put one in between my first two toes -
Like it was on my big toe -
But then there was no needle on my big toe. ??
Strange that there was that mis-perception of sensation.

Janet leaves the room…
And at some point I’m feeling kind of ‘out of body’ -
Like, ‘Am I really here’? 
And I hold my arms up to look at the needles -
Like I usually do - to see where they are -
To use as acupressure points later. 
I clasp my hands together -
And I’m looking at them extended overhead….
And they just didn’t feel like my arms. 
I was looking at them,
And knew they were my arms...
But I’m looking at them, very confused,
Thinking, “Am I supposed to hold them up like this? Is that why they’re up? Cause it will help somehow with the energy flow (of the acupuncture)?” 
Finally, thinking, ‘this is too weird/too trippy’,
I put them down -
And focused a lot on my breath:
Breathing in good health and breathing out poor health: 
Breathing in flowers and sunshine oceans and beaches -
And breathing out -
All that is Awful. 

But then I didn’t want the awful gray air to be coming out of my body. 
That doesn’t seem healthy. 
So I just made the breathing circular -
Breathing in and surrounding myself with white light -
On the exhalation, too..........
And then how to focus on Driving Back Home -
With my flippin’ sunglasses on -
At night -
Cause of the lights of the cars. 
Janet had already said that she was convinced that I still had active Lyme Disease. 
There was nothing about my symptoms and condition to indicate that this was “Post-Lyme”,
As some had suggested. 
Even those who did do that were hesitant,
Because then it’s saying that something ‘chronic’ is going on,
And the CDC (Center for Disease Control) had put the fear of God in everyone
To avoid using the word ‘chronic’ in association with Lyme.
Doctors have actually lost their licenses because they treated patients with chronic Lyme.
Unbelievable!
What about the Hippocratic Oath?
Just boggles my mind....

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

Keep meaning to go back to the beginning -
With chronological journal entries that start in July of 2015 -
Still plan to -
But next time maybe write about Diary of A Type A.
Maybe that's one part of the problem in healing?
Or not healing?
I've known of people who seemingly recover just fine from a diagnosis of LD.
Why is that?
OR maybe it has to do, specifically, with The Bite?
Another topic, also, for another time. 

Until next time, 

Thanks for reading, 

Peace out...
Lisa

The Matter of The White Matter: Neurology 101

~Sitting down today to write a new entry.
I left the old entry open so that it would be easy to access.
But I had to sign in again. oy.
It's tasks like these that are very challenging.
My brain has to take a .... ??? .... and regroup - somehow -
To try and figure out the next step.

So I got there. Or here.

~Totally bummed that I can't drink coffee anymore...
Or even regular tea.
It was one thing to have coffee limited -
In order to avert the ongoing aura of ocular migraines.
But, when I think I can have some tea,
And things seem ok,
It creeps up on me slowly -
Without fail - over the course of a week or two -
As my vision starts to get challenged/strained -
My head, forehead, eyebrows get tender to the touch,
And the pressure builds in my forehead.
My head starts to 'swim'/feel overwhelmed,
And my ears have a soft fuzzy ringing buzz in there.
It's hard to read,
Because I need to close my eyes
And would do best just lying down.
It's a challenge for me to just lie down.
Though I usually like it when I do.
Relaxing.
What a notion.

So..., no tea either  :(.
Trying to have green tea and herbals be enough.
Doesn't quite give me the jump start that had been helpful pre-Lyme, tho.

Sitting here at the computer on a Saturday morning,
Ataring at this BRIGHT screen is already a challenge.
We'll see what can get done.


=======================================================================

THE MATTER OF THE WHITE MATTER

I've had two MRIs: Magnetic Resonance Imagings.
They were a year apart.
The first one was in September of 2015 -
The second in October of 2016.
The first was requested because of the unresolved issue with my brain.
I'd been bitten in the small of my back when camping with my kids,
And didn't know it for ...over a week?
As the tick dined on me.
The infection went into my central nervous system.
After a month or so,
My general practitioner's office had advised me to go to the ER,
Because of a concern about potential Lyme Meningitis -
Based on an extreme headache and stiff neck.
I was given the wrong Lyme test at the ER,
Because it didn't test for the antibodies.
By the time I went to a second infectious disease doctor at the end of September,
The antibodies had built up enough to show that it was,
As was initially diagnosed at the Urgent Care Clinic in July,
Lyme Disease.
I was also tested for many other tick born diseases - all found negative.

Thank you Dr. LL for making the effort to help people with Lyme Disease (LD).
He's gone now - Don't know where or why.
Didn't give a reason, or an indication of where he was going,
As most moving health professionals will often do.
The award winning documentary, Under Our Skin, might give you some insight as to why.

The first MRI showed white spots all through my brain.
But they're stable.  They're not active. That's the upside.
The second MRI showed no further infection -
But all of the white spots are still there.
The downside is that my brain is compromised in some way by all of these white spots.
What do they mean?
The MRIs report early ischemic damage, demyelination, and large perivascualar spaces.
oy.
I'm note sure exactly what all of that is, but I do know some things about the brain....

...From my studies as a graduate student in speech pathology,
And then continued as part of my music therapy studies,
And then later more studies as part of my masters in health promotion.
I find the brain very interesting.

But, given my current condition, some of this might be a little off...

NEUROLOGY 101

Brain cells are called neurons.  
Neurons have a cell body, a myelinated axon and dendrites.  
The neurons communicate through each other via the synapses, 
Or spaces, between the dendrites of one neuron and the body of the next neuron.  
Many different chemical reactions take place in these synaptic spaces. 
The neural communication of the brain's cells determine everything that happens in our bodies.

There are different parts of the brain for speech and language, motor skills, cognition, the limbic system, over all immunology, and basic life functions regulated by the brain stem. 
The axons are covered with myelin, 
Which help to protect the axon of the brain cell, a
And which therefore help to maintain the neural communication 
That passes from dendrites through synapses to the cell body, 
Down the axon, to the dendrites, and so on. 

What do the white spots mean?  
Are they placque?  Dendritic tangles? 
Placque and dendritic tangles have been associated with Alzheimers Disease.  
The white spots of MRIs have also been associated with Multiple Sclerosis (MS).  
Research is discussed in "Under Our Skin" that found the majority of a group of Alzheimers-infected brains tested post-mortem to actually be infected with Lyme Disease. 
People have also been misdiagnosed with MS who actually have Lyme Disease.  
I meet people regularly,  
As recently as two weeks ago, 
Who have reports of such misdiagnosis - 
For themselves, or for someone that they know.

So, what is happening as a result of the white spots?
Are the brain cells not able to communicate as effectively because of them?
Are they atrophied, or dead, areas?
Dendritic tangles?
Something else?
As with a stroke -
Which leaves a damaged area or areas of the brain that make motor or speech skills difficult -
Might this be similar?
Early on in my symptoms
I literally felt a 'fritz' in the upper left side of my forehead
When I was interrupted during time at the computer -
With too many cognitive tasks going on.
There is a cluster of white spots on the MRI where I felt that fritz....???

And what is happening as a result of the de-myelination?
(God, that's so hard to spell right now. Reaching my limit here soon.)
Surely there is something connected to the way I feel and function that is connected to that.
(I keep having to correct what I type.  leaving out verb tenses - combing words....)
(...and am now correcting a few typos as I edit to make this more readable 2/20)

I take some comfort in what I know of the brain through my work as a music therapist.
People who have lost the ability to talk
San relearn speech through singing,
And relearn walking through rhythmic movement.
I take comfort that I can make new connections in my brain around any damaged ones.
I challenge myself to do this:
Playing the piano,
Learning new names,
Learning a new game.  
Substitute teaching at different schools
And with different classes regularly was such a challenge -
Just remembering where I had to go!
I was very happy to finally learn the moves of 'en pasant' and 'castling'
In the game of chess this past summer:
Something I've been meaning to do -
And was SO GLAD to have been able to do it.
Wasn't sure that I could.

My head is usually in a bubble.
But I try not to let that get me down.  I
t is what it is.
Part of the new normal.

I have some more about this, but....

For Now,

Thank you, Mary Wright Julius, for bringing this to me at Hanson Farm last week.

GEORGE STANCHFIELD'S TICK AND MOSQUITO SPRAY  - Makes 4 ounces

2 ounces boiled water

1 ounce witch hazel

1/2 ounce vodka ("Tito's is the best")

25 drops peppermint essential oil

20 drops lemongrass essential oil

10 drops lavender essential oil

5 drops tea tree essential oil

Until next time.

Peace out, 

Lisa

The New Normal - Sept. 2017

Good Morning!

With the help of James Hayes-Bohanan,
Trying to navigate the newest waters of blogging technology.
Will also be posting this as a new page on FaceBook -
Going by the title of the same name -
And am re-posting the first entry there before adding this one.
Thank you, Kathy Begin Fontaine, for suggesting that.
Hoping to reach people -
Know that I'm reaching some -
Continuing to be validated when meeting people
Almost each and every week
That either know someone with Lyme or have had Lyme themselves.
So this seems necessary.  I
n the absence of truly being helped -
Across the board -
With the health issues that arise as a result of Lyme.

In sum, 
The nature of my Lyme Disease circumstances and challenges 
Were with regard to the inflammatory nature of Lyme, 
Its resistance to (being killed completely), 
And flare-ups that presented themselves 
As different conditions throughout my body every 4-6 weeks – 
Almost on schedule. 
Because I was bitten in the small of my back, 
And didn't know for .... several days?  a week?  
Not until the blood engorged tick practically fell off of me ... 
I was infected, it appears, through my nervous system fairly quickly.

But, before going on with the health journal entries
That I'd mentioned would be coming up next,
It might be better to begin closer to the present here -
And then go back.
This is a work in process:

THE NEW NORMAL

Here I am, over two years later, since contracting Lyme at the end of June, 2015.  

This is the New Normal:

~       Respecting my threshold – and that I have less stamina, particularly later in the day.

~       Going to bed earlier, most nights.  Most often in bed around 9.  Used to be 10 ish.

(Then up around 5, or 6 – 7 if I’m ‘sleeping in’.)

~       Lying down to close my eyes and rest my brain
      For at least 15 minutes most days.

~      Honoring an Anti-Inflammatory Diet 
      Doing the Eat Thoughtfully Cleanse for the last 1 ½ weeks with Cathy Sloan Gallagher;
      I was down 10 pounds....
      (and within about 36 hours, I was up 2 pounds after reintroducing carbs back into my diet.  Snack pastries from a lecture I gave earlier in the week that they’d offered me to bring home for my family – which I ate… and eventually had to throw away in order not to eat).
      Now weight is back down again.
      Less weight means less stress on joints and heart and lungs and all that.

      

      The Anti-Inflammatory Diet impacts the inflammatory nature of Lyme:
      Throughout my body, something is damaged and vulnerable –
      And easily susceptible to inflammation.
      For me it has primarily been my brain and my lungs.
      At times my head is tender to the touch, and it feels like it is swollen -
      Just close to the scalp.
      Exacerbated asthma has been the lung issue - sometimes turning into pneumonia. 

      Main things I've been focusing on for the maintenance of an Anti-Inflammatory Diet:

                          *Limiting Carbohydrates -
      (Especially refined ones from more processed white breads, etc. that use white flour and white refined sugar) 
      Is the biggest challenge, 
      So opt for the whole grains wherever possible, 
      Which are also more filling and sustaining.

                         *Limiting Caffeine -
      Had black tea and didn’t feel well shortly after.
      It started to affect my vision and my head hurt.
      The barometric pressure change that rainy morning was probably contributing to it.
       But I need to have even more limited caffeine: green teas and herbal teas.
       No coffee.

                        * Limiting Alcohol –
        Having it be the exception.

                        * Limiting Dairy and Eggs -
       I didn’t miss dairy or eggs that much on the Cleanse, so that’s good –
       Other than passing cravings for pizza. J
       Because I had enough good fats in the Cleanse: coconut milk, avodacos, fish, chicken, good olive oil, and butter was the one dairy item that was 'Cleanse approved'.

                       *Limiting Sugars –
       Which is related to all of the refined carbohydrates, which metabolize more quickly to glucose – so not as filling or sustaining, and affect blood sugars.

                      *Adding fermented foods -
       Which are naturally probiotic,
       Such as good sauerkrauts or kim chi.              

             *Adding garlic often -
        Which is a natural anti-biotic, and turmeric, which is naturally inflammatory.

~      A quieter voice -  
      I always regret it when my voice is, either, more resonant-in order to carry in a larger space or outdoors, or loud-in order to be heard over a classroom of students or with my son (when people aren't listening).

~       Limiting commitments – 
      For me, it’s in the evening. Limiting that.
      My mother recently, said there were two things she set her day to doing.
      She had issues with blood platelets, Renaud’s, CREST, GAVE,
      So, two things a day:
      Working with her historical commission and a church committee, for example.
      For me, if I do a work shift then a meeting,
      Or a work shift and then a game with Graham,
      Or work shift and chores -
      My limit has been reached.

~       Have to be ‘in the moment’ – 
      My words,
      My hands,
      My legs and feet –
      Or I drop things
      Or trip/mis-step,
      Twist syllables around or say the wrong word.
      (Just lovely that my son imitates my speech errors.  I’ve learned to ignore it.) ...  
       Sometimes the error is a good thing: 
     Like putting the $2,000 transfer to summer savings in the checkbook –
     Twice.  
     So I found an extra $2,000 when balancing the checkbook! J

~        Enjoying 30 minute Shiatsu appointments 
      With Jill Chapman, as regularly as my checkbook will allow.
      Was living for shiatsu for a while -
      Since felt so poorly most of the time.
      Love Shiatsu. Highly recommend it.

~       Enjoying green light drinks
      At the Green Light in Duxbury,
      When my travels to go clamming there allow.
      Ginger, Apple, Cucumber, Spinach, Celery, I think....
      So good. Highly recommend it. :)

~       Trying to not sweat the small stuff – 
      Or the big stuff… is a challenge.

       Feeling like I’m in a bubble most of the time.

~        But having faith in the brain’s ability to adapt and learn 
      And circumvent damaged areas of the brain.
      More on that later.
 ~   Try to meditate every day.  
      Very important for a Type A personality.  
      It’s come out of how to cope with the neural and vision strain of every day…
      The condition reminds me to stop and breathe.  
      Just breathe. 
      The challenge for a Type A is that, as soon as I start to feel better, 
      I think I can do what I’m used to doing – 
      And what other people have grown accustomed to me doing; 
      And then I’m burning the candle at both ends; 
      And my system can’t take it now.

            ~    Avert my eyes from lights –
                  Any kind of bright light or reflection of light onto something light –
                  Includes the TV,
                  Grey hair of a fellow church goer in the bright sunlight, c
                  Candlelight, firelight, car lights...
                  A large light colored rock in the sun triggered an ocular migraine...

            ~   Vocally 'tone' almost daily….
                 As a form of internal massage and way to change the brain waves.
                 Please look it up.

            ~    Massage my forehead and eyebrows.
And put pressure points at my wrists and elbows....
Part of the locations used in acupuncture visits
(With Janet Cabrera of Good Life Acupunctur&Holistic Therapies in W. Bridgewater, MA)

            ~    Breathe: 
                 Sitting in the YMCA blood pressure machine –
                 Was able to bring my blood pressure down – twice –
                 In a very short time - just focusing on my breath.

  

            ~  Be around people who are good for my health and well-being. 
                Along the lines of setting boundaries...
                Maybe that means being more on my own, so that there’s peace;
                And trusting in the support of my community:
                My ‘village’ as Kathleen Howland had referred
                To the support she saw on my FaceBook page.

            ~  Shifting from a career as a music therapist
                To work in the classroom
                And working outside at gardens or farms -
                So that I don’t have to bring work home with me
                Or prepare beforehand. 
                The shift from one vertical career climb
                To another adjacent career
                Requires a cut in pay/taking a step backward. 
                Adjusting to that.
                But less pay is better than NO pay,
                Which is the case if you can’t function enough to get to a job. 
                Also, I’m then not the one in charge. 
                That's a good thing.
                I had an interview recently where they asked how that would be for me:
                Not being the one in charge?
               They’re always careful how to word it. 
                I imagine they put it differently when they’re talking with each other.  

                But people don’t realize how much I've worked collaboratively
                WITH other people. 
                It’s the nature of what music therapists do.
                And then I also had to do that as a self-employed contractor –
                With all of the administrators at sites –
                And also with all of the classrooms
                With all of the different teachers, different therapists, different assistants and different families.

  

            ~    I 'preface' my behavior with a short explanation –
                Such as when substituting with a 5^th grade class,
                I told both of the classes that came through the one classroom I was covering
               (They do team teaching) –
                That I had Lyme Disease –
                And that it affects my short term memory
                And it affects my speech.
                That sometimes I twist my words around,
                And that I’m sensitive to light and sound –
                I don’t want to have to raise my voice.

            ~   I prefaced a talk with the WB Ag Lecture Series
                 (On how our local community gardens came to be)
                With the mention that I had Lyme Disease almost two years ago,
                And that my words sometimes get twisted or mixed up…
                And this is on cable television. 
                Ah well. It is what it is.

    Wary of the long term ramifications

    Of a nervous system infected with the Lyme Borrelia  bacteria. 

    Medical professionals don't know enough.

    Not any where near enough to help all of the people infected with Lyme,

    And other tick borne diseases.

????? 

A question I have for medical and other health professionals:
What is the nature of the inflammation that results from Lyme?
Both short term and Long Term?
Not looking for an answer right here.
But shouldn't it be addressed in the research and effective intervention? 

?????

Would like to continue with more now:
Sifting through what I've written already
For the book I've been working on
As I have continued to add entries,
And knowing that there are relevant parts interspersed here and there...
This New Normal entry was originally written in April
And edited some because of that,
With other things having taken place since then....
Ah well...
My brain and my eyes are telling me, 'no'.
All done for now.

Thanks for reading.

In health and wellness,

Until next time - 

--Lisa

Bit By A Tick - June, 2015

Two years ago,
In June of 2015,
I was bit by a Lyme infected tick.
My plans are to write a book.
It's been in the works since April, 2016.
The point of that book is to help anyone navigating this rocky road of Lyme Disease.
But,
Given all that can be involved with Lyme disease -
Or Post Lyme Disease -
Or Persistent Lyme Disease...
Or something related to other tick born diseases...
Whatever it is,
I can now only get so much done in any given day or week.
I have been working to come to terms with my 'New Normal';
And the book is still a ways out....
So I've come to realize that a blog might be the best way -
At least for now.
Thank you, Jen Winsor, for mentioning it recently.

Part of this blog will reflect the draft
That is in the works
For the book of the same name.
Part of this will include
Many of the journal entries that I made
In two separate health journals
Over the past two years.
I think I will begin chronologically,
More or less.
I think it will be weekly.

Please understand that I am living
Each day and week
On a limited threshold
Of energy and stamina,
And diminished
Overall physical and cognitive ability -
With a head
That usually hurts,
Hyper sensitive
To light and sound,
And something
'Flaring up' every 4-6 weeks:
Most recently
It's been chronic asthma.

Please understand that,
Given the full time job,
Part time job,
Family responsibilities,
House and home,
And volunteer work
That I am trying to maintain,
It would be rare for me
To respond to comments or feedback.

As a Type A personality,
My New Normal
Still reflects
A lot of energy and capability.
So therein lies
Some of the conundrum:
Seeming just fine much of the time
To other people -
With a smile on my face 
And a 'thumbs up'
When asked
For the thousandth time,
"How are you?".
But do they notice
That my voice is quieter? ...
Cause the sound of my own voice
Is too resonant for my head?
And if I do resort
To my former way of speaking,
I always regret it:
Puts pressure in my head,
And me on the brink
Of an ocular migraine.
Sooo... having to know
That what is in my best interests
Is to set boundaries,
Limit involvement,
And 'just say no':
So that I don't end up bedridden -
As I did last March.
Because most people
Simply don't understand -
Even close friends and family.
:(

As recently as last night,
I said the bedtime prayer
That had developed
When things were at their worst:

God bless this bed

God bless the roof over my head

God bless my friends and my family

God bless the breath that is still in me
(Put a melody to it, too - Kind of like a chant)

========================================================================

DEDICATION 

This is dedicated to my mother, Luane,

And to all Mothers, 
Caregivers, 
Patients of Lyme Disease, 

And others 
Who have faced adversity 

With grace 
And resilience.

PRAYER

For all those 
Suffering from Lyme Disease…

To simplify, 
Rest, 
And breathe.

PREFACE

This is written
With the hope and expectation
That it will help people.
While the experiences of Lyme Disease
Have been different for some people
Who were initially diagnosed and treated the same way that I was,
My struggle has been comparable to those of many others:
A long-term uphill battle – 
Both confusing and debilitating.
If this can help even one person with that battle,
It will have been worthwhile.
In some strange way,
This could be why I contracted Lyme:
To help people with Lyme.
It’s a strange twist of fate.

Over the course of the year
That followed my very timely diagnosis of Lyme Disease,
I had many dozens of office visits –
To a wide range of health practices.
Western,
Eastern,
Alternative,
Homeopathic,
Holistic
And Natural healthcare
All played a role
In the comprehensive treatment and intervention
That eventually lead to my gradual improvement.
The ongoing challenge was that,
A year after diagnosis,
I was still dealing with
Truncated language processing
And cognitive abilities
That were easily halted
With any degree of mental stress -
And what I will call Persistent Lyme.
This presented itself as inflammation
In various forms throughout my body.
While the condition could be labeled as chronic,
In that the symptoms related to my initial Lyme symptoms
Lasted longer than several months,
The term ‘Chronic Lyme’ 
Seems to be more aptly applied
To those who have gone through
An even longer time with “Undiagnosed Lyme” –
Too many years for too many people.

So, 

Until the medical industry catches up with the epidemic that is Lyme Disease; and

Until there are significantly more Lyme Literate health professionals; and

Until there is more significant, objective and relevant Lyme Disease research; and

Until we have more effective treatment
For all that is associated with the aftermath that is related to Lyme Disease,

Patients, such as myself,
Are left to theorize and try to fill in the gaps -
As we try to get better,
And understand what is wrong;
All the while doing this
In a compromised neuro-physiological state of being.  

God help us, every one.

========================================================================

INTRODUCTION

Everybody has a story...
The 20-something or younger
Who sits down next to me on the train,
And says, ‘no’, she’s not from New London
When I ask as we pull away from that  CT station -
And shortly gets off in New Haven –
Unfortunately choosing to share no further information about herself;
The resting 30-something
With a very young baby slumbering on her chest
As I walk by to get a cup of hot soup from the cafe car
(‘Cause I’m STILL SICK);
The very loud financial-something-or-other
Man behind me who wants everyone on the train
To hear his conversation on the phone;
The guy carrying a cute little gal quickly
Down the aisle as she excitedly and repeatedly points out
‘Whadae?’ to many things as they scoot by;
The woman and her very well-behaved young child
Across the aisle,
Who snacks while mom hangs out on her phone
And “shhhhh-shs” the child’s many unanswered questions;
The youngish older fellow in front of me
Who sometimes nudges his nose right to the window
To get a closer look at what’s passing by.

Reflecting on my story,
As I try to rest and sleep on the train -
With the aid of a night-time cold and flu pill,
And the most recent prescription of cough syrup with codeine
For the day long ride from Boston to Washington, DC -
To visit our girl at school,
And see the cherry blossoms:

I think of the 5,000 mile ‘Road and Rail’ trip
I took with the kids the summer before last -
From Massachusetts to New Orleans -
Mostly along the Eastern to South Eastern U.S. coast -
Until we cut across the lower half of Georgia
To the Mississippi coast -
And came back from New Orleans
By way of the train to visit Cousin Cara in Alabama -
Until the train again from Greenville, SC
Back home to Mass.

Glad to have done that trip when we did -
Before Clara graduated from high school
And ventured off to college.
Not such a big deal then,
All that driving.
It’s what I’d been doing for 25 years:
Self-employed as a music therapist -
Itinerant -
Taking my work on the road to all of the contracted sites,
Mostly in Southeastern Massachusetts.

Glad we did that ‘Road and Rail’ trip then -
Cause likely couldn’t do it again.
Can’t do it now.
Not like this.
Not since the end of June, 2015,
When I got Lyme Disease.
And I am one of the ‘lucky’ ones.

I WAS LUCKY

The symptoms came on quickly -
One by one over the course of one week,
And which lasted into a second week.
It took a little bit of time to figure out what was going on.
Some of it seemed like mono,
Which my daughter had had in high school,
And I had also had in the 1970s.
The very first symptom was a headache -
And I typically didn’t get headaches.
(This would be the one, ongoing, persistent symptom through all of it.)
Then there were the chilling, soaking sweats overnight,
Achy all over,
And feeling extremely faint if I stood up.
I had crawled along the tile kitchen floor
In the middle of one night that week,
After I’d gotten up for…. Tea?
Hard to remember now.
One symptom that week,
That didn’t repeat itself in all of the months to follow,
Was sharp pain in my upper right abdomen.
It lasted for hours.
(My gall baldder?)

My body seemed to move through different symptoms quickly,
Which also included general physical fatigue,
Lightheadedness,
Extreme sensitivity to light,
And an ocular migraine.
As I sat at the computer in my office one day,
I started to see geometric shapes wherever I looked on the screen.
And my head still hurt.
I made an appointment to go to the Urgent Care Clinic at our local medical facility,
To rule out… mono?

If I hadn’t set aside this time to go,
I might not have gone,
Since I started to feel just a little better
After feeling so awful …
Until my joints hurt.
My knees and hips noticeably ached.
So I kept the time set aside for the walk-in clinic up the street,
To rule out… Lyme?  

As I sat in the waiting area there,
Dressed in shorts typical for early July,
I noticed a red blotch on my right leg below the knee….
Hmmm….
And then another small red splotch lower on the same shin – closer to the ankle.
I would point these out to the Doctor NP.
After she listened to my symptoms, and checked me over,
She told me that I had a rash all over my torso as well – back and front.

She said that it was “a classic case of Lyme Disease”;
But that the good news was that it was
“…100% curable”.
Good news, right?  

Back at home,
I took pictures of my rash.
It included an oblong, more discolored blotch on the small of my back.

A daily dose of 100 mg. of Doxycycline was prescribed
For two weeks,
Which was fairly standard antibiotic treatment for Lyme;
But which I also came to find out in the months that followed:
Medical staff can be very reluctant to prescribe -
Sometimes for good reason,
And other times not. 

Thankfully I had gone to the clinic that day
In hopes of ruling out Lyme.
Good thing I went,
As I had felt a little bit better since the onset of the first symptoms,
And had considered not going –
So I could rest?
Good thing that I went,
Or I wouldn’t have been there
With the rash
That coincidentally broke out all over my body
That same morning.
I wouldn’t have been prescribed ‘Doxy’,
Which has had its place
In keeping the Lyme bacteria at bay.
And none of the subsequent steps
Would have taken place,
Which included the Lyme diagnosis
Through the correct (second) blood test
Ordered for me by the (second) Infectious Disease doctor I visited.

Knowing what it was
Helped to determine some course of action.
But it is very concerning
That there were several well-respected
And well-educated
In the medical community
Who questioned whether it actually was Lyme.
(SO glad I took pictures of the rash.)
And there are many, many cases of Lyme
That do not have an accompanying rash.
God help these people,
As they try to figure out what’s wrong.
God help them
As they look to the medical profession
To help them get better.  

(until next time....)

In Peace and Good Health,

--Lisa