Surviving Lyme: One Chronic Experience : January 2018

Good Morning,
January 28, 2018

*Fell at the gym the other day.
Has to do with the vision issue and my addled brain -
Sneakers have glossed over on the soles, too - so very slippery.
Was trying to scuff them up as I crossed the parking lot into the gym.

In a BodyStep class...up on a step:
In a very slow,
Frame by frame second -
Maybe two -
Felt my foot slip off of the corner of the step,
Tried to regain footing,
Felt myself falling,
Thought:
"Oh! ... I'm falling...
Where to go? What to do?"
Suspended in mid air,
Trying to navigate a landing.
Thank God/dess I used to dance,
And know how to fall -
Used to go from leaps and jumps
In the air
To landings on my back
As a regular thing.
So that's where I landed:
On my back -
In a rolling kind of way.
Phew!
The instructors were more worried than I was.
Nothing got hurt.
But it was a little disconcerting
That my depth perception is off,
And proprioception is off
(Awareness of where my body is in space),
And it's a challenge to switch directions frequently -
Kind of swishes my brain.
Stayed on the floor after that for the class.
Can do plenty in a workout moving on the floor.

*And the good news is:
So far so good at the new job -
Maintaining a full time schedule
Assisting 3rd- 5th graders with psycho/social/emotional challenges...
Important to come home and rest in the evenings...
Pace myself,
Even there at the school.
One teacher has commented how I must be bored,
Whenever I'm sitting and observing-
Catching my breath/mindful of the moment.
I tell her, "I never get bored"....
And had to tell her a second time, "I don't get bored."
She seems surprised.

I've been surprised for a while that people talk about being bored.
How can that be?
The world around us has too much going on to be boring.
I tell my son, "It takes a bore to be bored"
(Or is it 'boor'?).
Of course, he doesn't want to hear that;
He wants to go back on video games.
Is that what's making people bored?
Addiction to the screens?

Back to the task at hand:

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

January Journal Entries, 2016
At 6 months post tick bite and Lyme Diagnosis,
And with writing very similar to the way first written -
Except that the publishing of this to Blogger has changed some of the tabs -
Which look fine when I go into edit -
But not once it's ready to view....????:
(And now, again, 2/12/20, continued editing
To make it more easily readable.
Shorter phrases at a time.
And I still have to type and retype the same thing....
But it's gotten better.)

1/3/16 – Happy New Year!

My health is my first priority of ’16.

Was just at church –
Only 3^rd time since last June –
Sat in back –
SO noisy going in
(Harry Belafonte recording of Turn the World Around to sing later)

Sunglasses on:
Bright sunlight in the window
Reflecting off the white pews + off of hair – piercing to my eyes/head

Sunny day!
Why my head feels poorly – pressure headache + to temples –
Jaw a little tight

Started getting sweaty during the sermon –
Watching waves of light patterns going down –
Then in from sides –
Too cognitive to process the sermon?

Spoke w/ Angela @ the ‘gaps’’ =
eg- yesterday went to put 3 DVDs in the mailbox at the p.o.
(had the letter in my lap also)

Can’t multitask so well now

1/4/16 –

Dr. A (Dr LL’s on-call sub) on phone
With me while I was on the ‘table’
@ Janet’s (acupuncture) for pleurisy

She said there is a Light at the end of the tunnel

That Post Lyme Syndrome can last 3 mos – year.
I’m at 6 mos.

I asked why I have some of the same symptoms as Lyme –
How is that not still Lyme?
She didn’t really have an answer

And when I asked Dr. L @ B&W if she was saying I was ‘cured’,
she didn’t respond.
She has said in an email that 2 weeks of antibiotics eradicates Lyme - + that she didn’t think I still had it.

When I am ‘cured’,
I will no longer have a pressure in my frontal lobe, over eyebrows – to temples + to upper mid of head

+ slightly sore throat that gets more swollen and achy at neck off + on

+ won’t have so many little gaps in thinking + task completion + speech
utterance blunders

1/11/16

Started a new supplement Fri –
Seems to be helping?
A neuro-transmitter supplement called TrueCalm

Includes: Niacin 225 mg 45%

B-6 8 400%

Magnesium 13 mg 3%

*Glycine 200 daily values not est (for all of the rest – had
crosses at the percentage in notes)

*taurine 200

GABBA 200

*inositol 100

Valerian 25

also cellulose magnesium sterate

· just looked up some of it –

· amino acids + …

helps w/ skeletal function, cardiovascular, brain function

Feel less pressure in my frontal lobe over eyebrows – no temple ache

Mon. a.m. off to Plymouth + G’s DDS + music fundraiser

Had a pretty good B-Day weekend

R made a notable effort

Got myself an hour of Shiatsu In

And a hair foil Sat

+ yoga Sat

+ time by myself – quiet

Returned DSW boots + went to Simpson Spring

+ dinner out w/ R (Vin + Eddie’s_

+ music (Blackthorne – too loud – but ok)

+ no appts Sun – Raining

Some cleaning, office

Errands

+ R drew a tub for me Sun

+G’s soccer game 8-5 over B’water J Sun Nite

+ Fires burning

+ Facetime (1^st time) w/Clara in DC

1/28/16

SO wiped this week by day’s end – SO many appts….

A friend from church offered to arrange a meeting with a friend of hers
who had undiagnosed Lyme Disease for many years.
We both met with her.

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

LETTER TO THE EDITOR(S)

Letter to the Editor January 4, 2016

Letter To The Editor:

At my most recent visit to the Urgent Care walk-in clinic up the street - this time for pleurisy, or inflammation of the lung lining - I asked the PA (Physician’s Assistant) if the inflammation might in any way be related to the inflammation associated with Lyme Disease. I had been diagnosed and treated in early summer, and have been experiencing some of the symptoms ever since. The P.A. said, “99% of us don’t believe that Chronic Lyme exists.” ..... ???? I hadn’t asked about “Chronic Lyme”. I had asked about specific symptoms. This was the second time in a few short weeks that two separate health professionals had chosen to coin the phrase, “Chronic Lyme”, and then dismiss it - when ‘Chronic Lyme’ wasn’t what was asked of them. Why? So that they could then dismiss it? Why again? Because they don’t know? ... Because they don’t know; And so are doing a tremendous disservice to an indeterminable number of people in the process. God help us - every one.

Lisa Rue

East Bridgewater, MA

(* 325 W. Union St. 02333)

* Not for print.

===========

I was never contacted
By any of the six papers I sent this to in New England and New York,
So I assume it was never printed.
I’ve had letters to the editor printed in the past,
And have been contacted about them prior to printing.
Why wasn’t it printed?
Did they misinterpret my asterix
(Which was meant for the address portion only?)
All of the papers?
Based on other circumstances related to dismissal of ‘Chronic Lyme’,
It seems more likely that it was due to the far reaching tentacles of general pressure from the oligarchy ???
That is the health insurance and pharmaceutical paradigm???...
To not take responsibility for the current epidemic that is Lyme Disease.
Under Our Skin discusses the statistic that there are more people with Lyme Disease than HIV and AIDS combined.

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

~As the days, weeks and months unfolded,
It appeared that almost everyone I spoke with
Knew someone with Lyme Disease,
Had had Lyme themselves,
Or currently was recovering from Lyme.
I started a list of all of them,
But after a hundred or so, I've stopped.
Suffice to say that it's pervasive.

I continue to this day - in 2017 - (and now in 2020...)
To learn of people with Lyme,
And who have ongoing challenges
That the medical industry is not addressing for them.

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

An exchange of emails between me and A neurology team in Boston
\Was my attempt to understand what was going on…
Aside from being a woman with a headache.
It was more than that –
So much more than that.

The emails began in September of 2015
And continued to December of 2015.
I have abbreviated any names or places.
My point isn't to name names.
It's an effort to address the dearth of Lyme Literate health professionals.

On Sep 6, 2015, at 5:49 PM, from
> <lisa_rue

Hello Drs J, L and B,

I received the notes from Dr. B's visit with me, in order to give some information to the Federal District Court in Boston (re: Jury Duty - on call for three weeks). I was surprised to see that Dr. B didn't think it was necessarily Lyme Disease. Ehrlichiosis (sp?) was mentioned. Lyme was what Dr. P in East Bridgewater had diagnosed, based on the rash and my symptoms. I only had pictures of a few of the blotches and circles. The one that more resembled the classic Lyme bullseye - that ripples out as if a drop of water on gasoline, was the circle in the small of my back - where I was bitten, I think. That picture did not do the coloration of the circle justice. And it was more oblong, because it was in the small of my back maybe. I recall a mention of 'that's the migraine" when the Drs. in Neurology saw that picture. Did I hear right?

The other largest circle was on my shoulder - large and red and round - with a small white center. Didn't take a picture of that because my tan obscured it - didn't come through in the lens when I tried. The circles and blotches were all over my body - both sides of my limbs and my torso. The diagnosis was also based on my symptoms - all classic for Lyme.

What was not mentioned in the notes by Dr. Bank were my soaking night sweats that alternated with uncontrollable shivers - prior to the Doxy treatment.

I am wondering why my head is STILL such a mess. Still feel like I'm in a bubble. Have a pressure type of headache, occasional ear ringing - sometimes my head hurt more. It's been SO sunny here in East Bridgewater. When I cleaned our small kids pools on Friday, it was too much outside? As I stepped from my yard onto a porch, the back of my head swirled.

When I laid down with an eye cover, I could see waves of light cascading down repeatedly in front of my eyes behind my closed lids. I counted them. Twelves waves… eventually subsiding to nine waves, before they stopped. (I was unable to go to work that morning, calling at the last minute - didn't feel safe driving from EB all the way to Swansea with my head and eyes in such a swirl.)

Dr. B also mentioned photophobia as a symptom. Isn't that a fear? That's not what I'm experiencing. I'm not afraid of the light. I love being outside. Will still be drawn outside… gardening, yard work. But my eyes have been sensitive to lights for a long time… one ocular migraine was specifically triggered by a light in a mall. Another was triggered looking at the computer screen.

(In the note from the neurology department there, it refers to me as having had ocular migraines "often". I had had them TWICE prior to the Lyme Disease - TWICE in 53 years - It's concerning that the Neurology Department would misrepresent this information.)

I also wondered if the diagnosis or understanding of my condition by Dr. J, in Infection Disease at the hospital, was recognized as Lyme? I don't have a copy of her notes. My mother asked why I hadn't had an MRI. I didn't know. Perhaps that would be helpful. I need to clarify that I am repeatedly correcting what I type. And as a side note, that, with appendicitis, I sang and danced the role of Rizzo in the high energy stage musical, Grease. Found out after the two-weekend show was over that I had a gangrenous appendix wrapped around my ovary. Wondered why I was so tired during the performances. Usually adrenelan will kick in even if tired from rehearsals and all. I have a different type of constitution than most.

Please don't take my symptoms and concerns lightly. I'm very concerned why the condition of my brain is not resolving. Icing my head and acupuncture bring some relief. I had most recently pursued homeopathy, but am not experiencing any difference in my symptoms with those remedies. The only time I feel most renewed is in the morning. But my head is still groggy. And then there will be short periods of feeling a little better. When minimal strain on/use of my eyes, brain, voice….Please advise. Regards, Lisa
*************************

From JL cc to JJ
Subject: Re: Post-Lyme??
To: "Lisa Rue"
Date: Sunday, September 6, 2015, 6:55 PM

Dear Lisa,
,
Thank you for reaching out. As we discussed, it is not that we don't take your symptoms seriously, it's that this is
a long haul issue that we don't have a magic fix for. What we can do is try a headache medication that you take
daily and have to slowly increase the dose for; the down side there is battling side effects. Did the steroids help?

Photophobia is a medical team for light bothering your eyes. You were wearing sunglasses to your appointment;
that is a signal for photophobia. MRI is not going to show us anything that could still be going on; your exam is
normal and MRI is not indicated in that situation, as it is simply not a great test (there are false positive and false
negative results that make it not as reliable as a good neurological exam). As we mentioned, a lumbar puncture
would be reassuring to have normal results for, but this is an invasive test, and as time passes it too becomes less
useful. I realize this is frustrating! It is for us, as well, as our hands can be quite tied. If alternative options are
helpful for you, that's as useful (and comes with less side effects) than any medications we can try to see if we can get your headaches under control. Perhaps we should make a follow up to discuss further.

J
*******************************************
The two MRIs I had later did not show anything to do with "positive" or "negative" - nothing written in the report as
such- so what were they talking about.?
*******************************************

On Sep 7, 2015 at 7:59 AM, Lisa Rue wrote:

Dr. L,

Thank you for getting back to me. My concern is that it is not specifically a headache, as you mention. It's the
visual issue and dizziness. The headache is less prominent - but comes and goes a bit here and there - though
maybe whatever is causing that - and the pressure in my head - is causing the dizziness and visual issues.
Again, I'm wondering what Dr. J’s impression was, as I mentioned in the previous email. Lyme? And you and
Dr. B thought not Lyme? Then what? I had all of the symptoms for it. And I saw pictures of people with Lyme
who did have an extensive rash - not just one bulls eye. And then there are people with Lyme who have no
bulls eye.

So there is a range of how it's expressed in the skin. Why would Dr. P. think it was Lyme when she saw me in July?
Whatever it was was helped by the Doxy for two weeks - when only headaches, fatigue, and light-headedness
continued - so another week of the Doxy. The dizziness and faintness continued a week after that - so a fourth
week of Doxy was almost completed - that's not in Dr. B’s notes.

Maybe that fourth week of doxy was too much for my body? I felt poorly in my head during that fourth week.
Swooshy head - photophobia - faint. I'm not sure if the steroids helped. Maybe some - (I sometimes have my
sunglasses off now - but the continuous bright days are overbearing to my eyes). What are side effects of the
steroids - along with Doxy - in my system together?

I would rather not take medications with "battling" side effects at this point. Then it all becomes a blur on what is helping and what is hurting. What would the lumbar test reveal that could be helpful and diagnostic at this point?

I'm wondering why it's such as long haul for this, as you say. What is your specific diagnosis? And what do you
think caused it?
Thank you, Lisa

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

On Mon, 9/7/15, L. M.D. wrote:

Subject: Re: Post-Lyme??
To: "Lisa Rue"
Date: Monday, September 7, 2015, 11:29 AM

Dear Lisa,
I think too much is getting lost in email. Perhaps you should come back
in to discuss in person. The clinic number is ....

MD
Chief, Division of Neurological Infections and Inflammatory Diseases

Assistant Professor of Neurology
****************************************** ****

On Sep 8, 2015, at 3:00 PM, Lisa Rue

Hello Dr. L.
I called the clinic. They scheduled an appointment for October 27^th at 11:00. First available….

Can you please at least tell me what my diagnosis is, and what the prognosis is?
A nurse friend also mentioned that Doxy can cause light sensitivity….
Perhaps, between the Doxy, the prednisone, and my hypothyroid metabolic
issues, my body is having to recover from all of it on a longer time frame.
Regards,
Lisa
***********************************************

On Wed, 9/9/15, Dr. J wrote:

Subject: Re: Clinic Appointment
To: "Lisa Rue"
Date: Wednesday, September 9, 2015, 9:47 AM

Oh my. Oct 27 is far. Let me see what I can do.

Your neurologic diagnosis at this point is intractable migraine.

Light sensitivity on doxycycline is a skin issue. You are more likely to get a sunburn.

Light sensitivity in your eyes is a migrainous phenomenon.

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

Sent: Thursday, October 22, 2015 1:13 PM
To: M.D.
Cc: LisaRue
Subject: Re: Clinic Appointment

Hello Dr. L,

Can you please request a copy of the MRI I had two weeks ago? There are many white spots on it -
throughout my brain. I'm wondering what they are, and what you might think…..

The Dr. who ordered the MRI is Dr. LL - at 508/897-4760. His specialty is infectious disease -
affiliated with Good Samaritan in Brockton at the Oak
Street Medical Building by the hospital.

I will see you Tuesday.

Regards,
Lisa Rue

***************************************************
On Thu, 10/22/15, Dr. L. wrote:

Subject: RE: Clinic Appointment
To: "'Lisa Rue'"
Date: Thursday, October 22, 2015, 12:41 PM

Thank you for reaching out. You will need to obtain the MRI disk and bring it with you to
the appointment. You can either walk in to the facility where you had it or call and have them mail
it to you.
J
***************************************************

From: Lisa Rue

Sent: Thursday, December 17, 2015 8:16 AM
To: J, M.D.
Cc: Lisa_Rue
Subject: Medical/Neuro File to PC?

Good Morning!

At my annual checkup Tuesday I was asked to have my files from your office forwarded to them. I was surprised
that they didn't have any information.

It is Dr. B at CM on B St. in …

Regards,
Lisa

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

On Thu, 12/17/15, J, ,M.D. wrote:

Subject: RE: Medical/Neuro File to PC?
To: "'Lisa Rue'"
Date: Thursday, December 17, 2015, 9:33 AM

Thank you for reaching out. Please call my office at 617-732-7432 and they can help you with
this.
J
**************************************************
From: Lisa Rue

Sent: Thursday, December 17, 2015 1:30 PM
To: Dr. L
Subject: RE: Medical/Neuro File to PC?

Will do. Thank you.
Wondering what your take on Lyme Disease is? It seems to be a very controversial 'topic' in the medical field.
I'm coming to terms with the likelihood that I 'have Lyme'…not 'cured'.

--Lisa
************************************************

On Thu, 12/17/15, Dr. L wrote:
Subject: RE: Medical/Neuro File to PC?
To: "'Lisa Rue'"
Date: Thursday, December 17, 2015, 5:46 PM

Hi Lisa, I do not think you have uncured Lyme disease. My view is that the internet is riddled with misinformation on the subject. Lyme disease is not as enigmatic as the internet makes it seem, nor is it a disease that we cannot eradicate with just a few weeks of
medications.
J

Lisa Rue

Dr. L

Lisa_Rue

12/18/15 at 8:32 AM

So, to clarify, you think I am 'cured' of Lyme Disease?
--------------------------------------------

She didn’t respond to this email.
Correspondence stopped.

What is so concerning about my symptoms and questions
Is that the doctors
Were very selective
About what questions they chose to answer -
And so, very subjective -
Not objective -
About what they were considering.

They were also subjective and selective
About how they reported my condition.
Also very concerning.

God help us, every one...

...Please refer also to the post on 'White Matter/Part II ...'
About concussion symptoms...

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

Oy.

Now I know why this took so long to get posted....

My head is toast.

Might be the Super Moon.

Until next time,

Good health to you and yours,

--Lisa

Surviving Lyme: One Chronic Experience

Tuesday, January 30, 2018

At 6 Months/Part I, Jan 2016: Visits with Neurologists, Journal, & Letter to Editor

Sunday, January 7, 2018

Hello 2018!