A more than a little concerned
With the ongoing vibration in various parts of my body.
Been going on for many months now.
Started with my leg -
The whole hip and leg thing mentioned earlier.
This morning - up since 3:30
With the vibrational buzz in my upper back
And into each of the upper arms.
Seems like it must be related to something in my nervous system.
Which is what's more than a little concerning.
Maybe also related to why I seem to miscalculate picking things up sometimes
The depth perception of my vision playing a role?
And something drops.
Screened for MS
Supposedly no.
But then Lyme is often misdiagnosed as MS
Among other things.
I take a night time pain pill.
But never fall back asleep.
Wondering if I shouldn't be taking those?
Don't take that much,
But do take them every night to help me sleep.
One each time I wake up -
Every 2 hours or so.
Supposed to get 4-6 solid hours of 'restorative' sleep...
Don't know if I do.
Wonder if the 'buzz' is related in any way
To 'gamma' brain waves?
These are the fastest ones, I think,
And which might be in overdrive.
Wasn't an issue before the Lyme.
So I lie there wondering if I can live another 30 years.
Hoping so.
But what will it be like?
And I think about breathing....
That usually helps for getting back to sleep -
Somewhat meditative.
And I think of Qi Gong
And Alpha Lipoic Acid (ALA) -
Which Tom Genung mentioned.
Will watch another Qi Gong video on YouTube today,
Start the ALA that's on the counter in the kitchen,
And take a hot bath with epsom salts after work.
I know that I'm doing too much -
And need to curb it all...
Or I'll be down for the count.
(But people don't get it -
Definitely not my family -
And others, too.
Will be looking for a new job -
Doing my best to get through this school year.)
**************************************************************************
In health and wellness,
Lisa
Tuesday, November 27, 2018
Saturday, September 29, 2018
The AC-Q Is Working/for Muscles and Joints
The Chinese herbal blend,
AC-Q,
From Health Concerns,
And recommended by my acupuncturist
To help with my unresolved muscle and joint issues since March,
Seems to be working.
I hope it's not temporary,
As so many parts of this Post-Lyme 'healing' process have been.
I still can't walk fast,
Or I seize up in my legs and hips,
And ongoing standing or going upstairs is still hard;
But there is much less pain and overall discomfort.
The herbal blend is comprised mostly of roots,
Many of which are new to me.
There are a dozen roots,
Two barks,
Two resins,
Two rhizomes,
One fruit,
One stem,
(And a partridge in a pear tree)
From which this is derived. :)
All I know is that it is working -
Even with my full time job in a school
Which includes a fair amount of walking.
Walking is needed.
Walking is necessary.
Or more problems develop.
I started taking AC-Q in the beginning of September, I think.
I'm very sensitive,
So I started very gradually -
Just one tablet each day
And then two.
At first it was with food,
And then eventually between meals.
When I start anything new,
I wait to see how it will effect me.
Intermittent dizziness often accompanies new treatment(s) for me.
After a few weeks,
I took two doses of two tablets a few days in a row.
Now that things seem to be improving,
I'm back to two total tablets each day...
This is what worked with the use of Astra 8 for asthma.
I will likely take two tablets of Astra 8 each day -
Indefinitely.
Will take two bottles of 90 tablets each of AC-Q,
And then see where I'm at.
Only took one bottle of the Clear Heat blend
For the immune dysfunction.
It helped and then seemed to plateau -
Just before starting the AC-Q.
**************************************************************
Wishing you well,
Lisa
AC-Q,
From Health Concerns,
And recommended by my acupuncturist
To help with my unresolved muscle and joint issues since March,
Seems to be working.
I hope it's not temporary,
As so many parts of this Post-Lyme 'healing' process have been.
I still can't walk fast,
Or I seize up in my legs and hips,
And ongoing standing or going upstairs is still hard;
But there is much less pain and overall discomfort.
The herbal blend is comprised mostly of roots,
Many of which are new to me.
There are a dozen roots,
Two barks,
Two resins,
Two rhizomes,
One fruit,
One stem,
(And a partridge in a pear tree)
From which this is derived. :)
All I know is that it is working -
Even with my full time job in a school
Which includes a fair amount of walking.
Walking is needed.
Walking is necessary.
Or more problems develop.
I started taking AC-Q in the beginning of September, I think.
I'm very sensitive,
So I started very gradually -
Just one tablet each day
And then two.
At first it was with food,
And then eventually between meals.
When I start anything new,
I wait to see how it will effect me.
Intermittent dizziness often accompanies new treatment(s) for me.
After a few weeks,
I took two doses of two tablets a few days in a row.
Now that things seem to be improving,
I'm back to two total tablets each day...
This is what worked with the use of Astra 8 for asthma.
I will likely take two tablets of Astra 8 each day -
Indefinitely.
Will take two bottles of 90 tablets each of AC-Q,
And then see where I'm at.
Only took one bottle of the Clear Heat blend
For the immune dysfunction.
It helped and then seemed to plateau -
Just before starting the AC-Q.
**************************************************************
Wishing you well,
Lisa
Thursday, September 20, 2018
Persistent Post Lyme Syndrome - ED. w/ FASCIA DEFINITIONS
Edited 12/1/18
See Definitions of FASCIA below***
I lie here with my right hip buzzing - slightly vibrating
Kind of like a subtle ongoing tremor
Sometimes it's my thigh
Sometimes the foot somewhere
I think back to the very early days of the Lyme
Over three years ago
when a strange electrical like current of energy
pulsed repeatedly in my lower back
Can't remember exactly where right now
But I know I'd written about it.
Now I'm thankful for the diminished pain - finally - In my right butt cheek
Thankful for the newest Chinese herbal blend
ACQ
which seems to be helping it
After all these months
Since the leg thing started
The newest inflammation
Going on six months now
For the newest inflammation thing
Persistent 'Post'? Lyme is an inflammation thing
Over and over again
In different ways and places in the body
Depending on what is most vulnerable/
What is the most stressed and overworked
And then there's the malaise
And the fatigue
And the bright lights
And loud sounds
And the disorientation
Will do two bottles of the ACQ probably
At the recommendation of my acupuncturist
Acupuncture has helped the leg thing
Has made me more able to walk and get around
But can't walk like I did before
Certainly can't speed walk like I did before
Miss that
If go too fast, or too long
It seizes up/it aches/it burns
It's numb/it tingles/it swells
The hip/the thigh/ the shin and calf
And now the knee
and the ankle
And in the past 48 hours,
It's taken over the left knee and hip...
That's the Lyme thing...
In the joints
Cracking them brings some relief
Cracking my right hip dozens of times each day
And taking handfuls of epsom salts directly to the leg parts
That helps
And Turmeric on most things I eat each day (with hot sauce)
And Vitamin B Complex (thank you, NP, Jen)
And Astra 8 (for asthma - taken for years)
And over the counter allergy meds
And Armour Thyroid
And the toxic steroid inhaler I'm trying to wean off of permanently
And anti inflammatory diet - 'clean' diet - when can stick to: no sugars,
no refined carbs, no caffeine, no alcohol, no dairy, no processed foods
And meditation
And setting boundaries/saying 'no'
And mindfulness
And the Gabapentin - if I have to
And Ibuprofen if I need to
Neither really helps in the long run
Did a bottle of Chinese herbal blend Clear Heat before the ACQ
The swelling in my right shin diminished more
And the row of dark spots that had appeared after
the March 'injury' on the treadmill that morphed into April swellings during lengthy walks
Had Finally shrunk down into Much smaller dark spots
Only took 6 months
It did appear to 'clear' out the 'heat'.
Less burn
Is that what comes from nerve damage?
nerve pain? the incessant burn?
But what is it exactly?
And what are those dark spots on the shin?
Not a varicose vein
There's one of those on the calf now
The Medicals all take a look
With no comment
Because they don't know.
Not the Physiatrist
Not the Physical Therapist
Not the Chiropractor
Not the Nurse Practitioner
Not the Fourth "Lyme Specialist"
Or the Fifth One
Maybe an answer from the Orthopedic guy
Maybe an answer from the Dermatologist coming up
But probably not?
I keep looking down at my altered leg
The right knee is swollen
The right calf is bigger than the left
The line of dark spots where something had weeped out -
From within -
Months ago...
(not a spider bite -
not a scratch)
THE TISSUE IS ALTERED
The FASCIA?? of my leg - of my body - is altered???
***Aug 7, 2018 - As Black defines it: “Fascia is the body's connective tissue. It's a head-to-toe, inside-to-out, all-encompassing and interwoven system of fibrous connective tissue found throughout the body. Your fascia provides a framework that helps support and protect individual muscle groups, organs, and the entire body as a unit.
A fascia (/ˈfæʃ(i)ə/; plural fasciae /ˈfæʃii/; adjective fascial; from Latin: "band") is a band or sheet of connective tissue, primarily collagen, beneath the skin that attaches, stabilizes, encloses, and separates muscles and other internal organs.
Wonder if the Medicals
Are up on the role of fascia
In the body's overall health?
Doubt it.***
I know I'll be up all through the night - again
'Cause can't get comfortable
But will keep on keepin' on
Because what other option is there?
Living in the moment
Am recalling the email sent out by Porochista Khakpour
To her friends
In the early part of Sick: A Memoir.
Can relate
But count my blessings
Not as sick as so many with Lyme
And Post Lyme
And Chronic Lyme
Counting my blessings
Have a good weekend;
Rob and I are going to a concert in Boston:
Nahko and Medicine for the People...
Keep on keepin' on.
See Definitions of FASCIA below***
I lie here with my right hip buzzing - slightly vibrating
Kind of like a subtle ongoing tremor
Sometimes it's my thigh
Sometimes the foot somewhere
I think back to the very early days of the Lyme
Over three years ago
when a strange electrical like current of energy
pulsed repeatedly in my lower back
Can't remember exactly where right now
But I know I'd written about it.
Now I'm thankful for the diminished pain - finally - In my right butt cheek
Thankful for the newest Chinese herbal blend
ACQ
which seems to be helping it
After all these months
Since the leg thing started
The newest inflammation
Going on six months now
For the newest inflammation thing
Persistent 'Post'? Lyme is an inflammation thing
Over and over again
In different ways and places in the body
Depending on what is most vulnerable/
What is the most stressed and overworked
And then there's the malaise
And the fatigue
And the bright lights
And loud sounds
And the disorientation
Will do two bottles of the ACQ probably
At the recommendation of my acupuncturist
Acupuncture has helped the leg thing
Has made me more able to walk and get around
But can't walk like I did before
Certainly can't speed walk like I did before
Miss that
If go too fast, or too long
It seizes up/it aches/it burns
It's numb/it tingles/it swells
The hip/the thigh/ the shin and calf
And now the knee
and the ankle
And in the past 48 hours,
It's taken over the left knee and hip...
That's the Lyme thing...
In the joints
Cracking them brings some relief
Cracking my right hip dozens of times each day
And taking handfuls of epsom salts directly to the leg parts
That helps
And Turmeric on most things I eat each day (with hot sauce)
And Vitamin B Complex (thank you, NP, Jen)
And Astra 8 (for asthma - taken for years)
And over the counter allergy meds
And Armour Thyroid
And the toxic steroid inhaler I'm trying to wean off of permanently
And anti inflammatory diet - 'clean' diet - when can stick to: no sugars,
no refined carbs, no caffeine, no alcohol, no dairy, no processed foods
And meditation
And setting boundaries/saying 'no'
And mindfulness
And the Gabapentin - if I have to
And Ibuprofen if I need to
Neither really helps in the long run
Did a bottle of Chinese herbal blend Clear Heat before the ACQ
The swelling in my right shin diminished more
And the row of dark spots that had appeared after
the March 'injury' on the treadmill that morphed into April swellings during lengthy walks
Had Finally shrunk down into Much smaller dark spots
Only took 6 months
It did appear to 'clear' out the 'heat'.
Less burn
Is that what comes from nerve damage?
nerve pain? the incessant burn?
But what is it exactly?
And what are those dark spots on the shin?
Not a varicose vein
There's one of those on the calf now
The Medicals all take a look
With no comment
Because they don't know.
Not the Physiatrist
Not the Physical Therapist
Not the Chiropractor
Not the Nurse Practitioner
Not the Fourth "Lyme Specialist"
Or the Fifth One
Maybe an answer from the Orthopedic guy
Maybe an answer from the Dermatologist coming up
But probably not?
I keep looking down at my altered leg
The right knee is swollen
The right calf is bigger than the left
The line of dark spots where something had weeped out -
From within -
Months ago...
(not a spider bite -
not a scratch)
THE TISSUE IS ALTERED
The FASCIA?? of my leg - of my body - is altered???
***Aug 7, 2018 - As Black defines it: “Fascia is the body's connective tissue. It's a head-to-toe, inside-to-out, all-encompassing and interwoven system of fibrous connective tissue found throughout the body. Your fascia provides a framework that helps support and protect individual muscle groups, organs, and the entire body as a unit.
A fascia (/ˈfæʃ(i)ə/; plural fasciae /ˈfæʃii/; adjective fascial; from Latin: "band") is a band or sheet of connective tissue, primarily collagen, beneath the skin that attaches, stabilizes, encloses, and separates muscles and other internal organs.
Wonder if the Medicals
Are up on the role of fascia
In the body's overall health?
Doubt it.***
I know I'll be up all through the night - again
'Cause can't get comfortable
But will keep on keepin' on
Because what other option is there?
Living in the moment
Am recalling the email sent out by Porochista Khakpour
To her friends
In the early part of Sick: A Memoir.
Can relate
But count my blessings
Not as sick as so many with Lyme
And Post Lyme
And Chronic Lyme
Counting my blessings
Have a good weekend;
Rob and I are going to a concert in Boston:
Nahko and Medicine for the People...
Keep on keepin' on.
Links to Dr. Rawls' Free Webinars on Lyme Recovery
~Follow the link below for Dr. Rawls' recent webinar (9/18/18)
"How To Overcome Roadblocks to Lyme Disease Recovery Q&A":
https://rawlsmd.com/webinars/replay/ask-dr-rawls-lyme-q-a
~Next Tuesday, 9/25/18, is another free webinar at 8:00 p.m,
"Restore Kit 101 - Dr. Rawls' Herbal Protocol"
Click on the link below to register:
https://vitalplan.com/webinars/restore-kit-101/
~You many need to cut and paste the link addresses in your address window at the top of your screen in order to access the site(s).
~RAWLSMD.COM also has much more information.
"How To Overcome Roadblocks to Lyme Disease Recovery Q&A":
https://rawlsmd.com/webinars/replay/ask-dr-rawls-lyme-q-a
~Next Tuesday, 9/25/18, is another free webinar at 8:00 p.m,
"Restore Kit 101 - Dr. Rawls' Herbal Protocol"
Click on the link below to register:
https://vitalplan.com/webinars/restore-kit-101/
~You many need to cut and paste the link addresses in your address window at the top of your screen in order to access the site(s).
~RAWLSMD.COM also has much more information.
Tuesday, September 18, 2018
SICK: A MEMOIR - Good book! (re: gnarly Lyme)
Sick: A Memoir (2018), by Porochista Khakpour,
Is a must read for every health professional,
Sufferer of Lyme Disease,
And friend/relative or loved one of someone who has suffered from Lyme Disease.
Thank you, Rev. Paul.
Is a must read for every health professional,
Sufferer of Lyme Disease,
And friend/relative or loved one of someone who has suffered from Lyme Disease.
Thank you, Rev. Paul.
Tuesday, July 17, 2018
NOTES FOR PHYSIATRIST TODAY
We'll see if this makes a difference. Will also post updates from CHIRO and PT that didn't work for nerve damage...maybe.
**************************************************
**************************************************
PHYSiATRIST at Compass
Medical – July 17, 2:30 w/ Dr. M's PA E.
WHAT IS
WRONG WITH MY RIGHT LEG?????
SPECIFICALLY,
MY RIGHT SHIN
(And calf and piriformis)?
(And calf and piriformis)?
*Something
has been slowly
Taking over my right leg
Since wearing wrong footwear
And overexertion on a steep treadmill in March,
Extensive walking for my job, etc.,
And extensive walking in Chicago in April.
Taking over my right leg
Since wearing wrong footwear
And overexertion on a steep treadmill in March,
Extensive walking for my job, etc.,
And extensive walking in Chicago in April.
* To Chicago
ER in April
To rule out a blog clot
To rule out a blog clot
*(Ultrasound
again July 5th
Through Urgent Care at Compass t
To rule out a blood clot per Dr. Broderick –
Cause my knee feels thick-
Expired Doxy 7/3-7/5
Reduced the swelling that was spreading from the shin to the calf)
Through Urgent Care at Compass t
To rule out a blood clot per Dr. Broderick –
Cause my knee feels thick-
Expired Doxy 7/3-7/5
Reduced the swelling that was spreading from the shin to the calf)
·
Problem
has progressed from:
-(Inverted
hip of some sort since birth) –
PT recently corrected it???? (He said)
PT recently corrected it???? (He said)
-My right piriformis
–
(BURNS - at night usually – use cold clay bag) –
Can often pinpoint the injury –
But then seems to radiate as well
(BURNS - at night usually – use cold clay bag) –
Can often pinpoint the injury –
But then seems to radiate as well
-Through my
right hip –
Feels floppy sometimes/gives out
Feels floppy sometimes/gives out
–To the
right SHIN ???????/achey, TIGHT, raised
swelling ?????
Like a bruise, and with a line of spots at one side –
One of MY BIGGEST CONCERNS:
IT’S BEEN SINCE APRIL
Like a bruise, and with a line of spots at one side –
One of MY BIGGEST CONCERNS:
IT’S BEEN SINCE APRIL
– And right
calf/numb and tight
Where swelling extended/expanded like cellulitis
** (see below)
Where swelling extended/expanded like cellulitis
** (see below)
– And now
the right knee/achey, stiff, swollen off and on
BURNS at night –
Gives out
BURNS at night –
Gives out
– And this
morning the right ankle/stiff
-
All
of it also has tingling and spasms
Off and on....
Off and on....
----A little in the left leg –
But minimal,
Compared to the right leg
But minimal,
Compared to the right leg
*Acupuncture
weekly since …. May?
*Chiropractor
in April
(Didn’t help –
Actually hurt my left shoulder and neck with the ‘adjustments’)….
Have XRays and report here today
(Sciatica DX)
(Didn’t help –
Actually hurt my left shoulder and neck with the ‘adjustments’)….
Have XRays and report here today
(Sciatica DX)
*PT May – 9 appointments
And only 10% improvement…
opted not to continue… Still do the exercises
To strengthen core and increase flexibility –
But not helping with nerve pain-
Makes it worse?
And only 10% improvement…
opted not to continue… Still do the exercises
To strengthen core and increase flexibility –
But not helping with nerve pain-
Makes it worse?
*Anti-inflammatory (A-I) diet
When able –
And A-I tonics
At least weekly?
When able –
And A-I tonics
At least weekly?
*Went to ID
Dr. in June….
Supposedly Lyme Specialist – at South Shore Hospital…
Told me I needed more sleep
And recommended melatonin.
Worked for one night –
Then rebound insomnia with it,
So stopped.
Also read that melatonin is not recommended for immune issues,
Which Lyme is.
Supposedly Lyme Specialist – at South Shore Hospital…
Told me I needed more sleep
And recommended melatonin.
Worked for one night –
Then rebound insomnia with it,
So stopped.
Also read that melatonin is not recommended for immune issues,
Which Lyme is.
*Also to Dr.
end of June
For skin ‘rash’,
Cellulitis?
Wild parsnip?
Shingles? -
The ‘burns’ still show on elbow, and by arm pits….
Maybe part of what’s on calf now, too?
For skin ‘rash’,
Cellulitis?
Wild parsnip?
Shingles? -
The ‘burns’ still show on elbow, and by arm pits….
Maybe part of what’s on calf now, too?
*I had asked
about my leg,
And the patch on my right shin
At the Chiropractor
And PT and
SShore ID Dr…
No one has given an answer.
No one knows.
And the patch on my right shin
At the Chiropractor
And PT and
SShore ID Dr…
No one has given an answer.
No one knows.
*Since no one
knows,
It’s fair to hypothesize
That it’s STILL the LYME.
It’s fair to hypothesize
That it’s STILL the LYME.
Have been in continuous stages
Of more unwell or less unwell
Since Lyme DX of 6/15 –
For over three years.
Of more unwell or less unwell
Since Lyme DX of 6/15 –
For over three years.
The right leg
Is just the most recent ‘flare up’ –
And which has lasted the longest –
Aside from the brain issue at the start
(And which is still unresolved)
Re: light sensitivity,
And other symptoms
Like those of a concussion,
But which have gotten less acute…
Is just the most recent ‘flare up’ –
And which has lasted the longest –
Aside from the brain issue at the start
(And which is still unresolved)
Re: light sensitivity,
And other symptoms
Like those of a concussion,
But which have gotten less acute…
-
…Primarily due to changes in my lifestyle:
Retired from my self-employed career
Of 26 years
As a music therapist,
Resigned from much church committee work & choir director),
Lie down almost daily,
Retired from my self-employed career
Of 26 years
As a music therapist,
Resigned from much church committee work & choir director),
Lie down almost daily,
-
…And anti-inflammatory diet and cleanses,
Try to get some form of exercise daily (gardens),
Work Part Time as a home health aide for the summer,
Will work Full Time in Easton schools again in the fall
With MUCH walking daily…
Try to get some form of exercise daily (gardens),
Work Part Time as a home health aide for the summer,
Will work Full Time in Easton schools again in the fall
With MUCH walking daily…
LYME IS
INFLAMMATORY
My SHIN is
INFLAMED…since APRIL.
**Looked
like possible deep tissue fascia cellulitis
JULY 4th holiday,
And was in CT,
Where on call Dr of Compass
Would not give even two days of antibiotics
Over the phone-
Said I needed to ‘be seen’ –
Which would have been AWFUL for my health
To go to the ER
On the JULY 4th holiday.
JULY 4th holiday,
And was in CT,
Where on call Dr of Compass
Would not give even two days of antibiotics
Over the phone-
Said I needed to ‘be seen’ –
Which would have been AWFUL for my health
To go to the ER
On the JULY 4th holiday.
SO I DROVE
BACK TO MASS AT MIDNIGHT...
(Hesitant to even drive after dark -
But drove on the adrenalin of thinking it could go septic -
Into my blood stream
And/or lymph nodes) ...
To take the expired Doxy
That I’d saved for an emergency.
(Hesitant to even drive after dark -
But drove on the adrenalin of thinking it could go septic -
Into my blood stream
And/or lymph nodes) ...
To take the expired Doxy
That I’d saved for an emergency.
THE SWELLING AND REDNESS
STARTED TO SUBSIDE.
It had to have been some form of bacterial infection.
It had to have been some form of bacterial infection.
LYME is a cork
screw shaped spirochete that is hard to eradicate.
IT IS NOT “100% CURABLE”.
IT CREATES A
BIO FILM TO PROTECT ITSELF.
AND USES THE
PATH OF LEAST RESISTANCE ON ITS HOST
TO SURVIVE –
i.e. whenever there is a weakness in the host.
TO SURVIVE –
i.e. whenever there is a weakness in the host.
With me,
It’s been my lungs & asthma
Ant then pneumonia,
My brain
Hyper multitasking for decades
Now have white spots throughout my brain,
And can’t multitask.
Everything takes much longer to do…
So can actually do much less….
It’s been my lungs & asthma
Ant then pneumonia,
My brain
Hyper multitasking for decades
Now have white spots throughout my brain,
And can’t multitask.
Everything takes much longer to do…
So can actually do much less….
***************************************
In peace and wellness,
Lisa
Saturday, May 19, 2018
Aha! (re: pain meds)
Thank God/dess for small miracles...
Two nights ago I was lying awake -
In extreme pain -
Again -
Severe burning pain through my piriformis muscle
(right butt cheek)
And radiating down through my hip, thigh
And to my lower leg....
Very, very concerned that this hadn't resolved
In over two months...:
(Chiropractor,
Two Lyme Specialists,
Neurologist,
Acupuncture,
Physical Therapy,
Homeopathy....
All visits that have their place
In the comprehensive and multi-faceted approach
To healing in this rocky terrain
Post-Lyme
(7/15 Diagnosis),
But.... Why wasn't it getting better?
Again?
I prayed to the my mother and father
To show me the way -
A Way -
Guidance in Some Way.
I figured I would be going into PT yesterday after work
To express concern over ....
Abnormally developing cells along this most recent flareup -
And, to me, abnormally developing cells means....
Cancer? Of some form? (There are so many.)
But, instead I had good news to tell at PT -
Having learned something new, yet again:
Yesterday morning, it was tolerable to walk -
Much better than it had been
As I'd tried to get into a comfortable sleeping position the night before
With such burning pain in my right butt cheek.
So...
Rather than take my morning dose of ibuprofen
(or naproxen that I'd been trying most recently),
I .... didn't.
I figured I'd take some
If the pain became intolerable
During the day at work -
Walking back and forth across two schools.
(I've had more OTC pain meds in the past two months
Than I'd had in the past year or more.
Thought it was helping. I think it was, at one point.)
Lo and behold!
There was no burning pain through the day,
And which I'd been experiencing for weeks now.
Didn't use any, all day yesterday,
Nor any today so far.
I mean, I was achy and sore,
And had to walk slowly at the schools still
Or it got worse, but -
What a difference!
I see the light at the end of tunnel...
Soon mowing again?
And speed walking?
IN SUM: Anti-inflammatory pain meds were not helping the inflammation and dis-ease of the nerves associated with this flare up (sciatic, femoral), and, also the piriformis (also see Piriformis Syndrome) - and they actually were MAKING IT WORSE.
***************************************************
Thank you, Robin Soule,
For the link to the Rawls MD Webinar, "Decoding Lyme",
Which I attended Wednesday evening.
Dr. Rawls also wrote the book,
Unlocking Lyme,
About has personal experience with surviving Lyme Disease.
There is too much to review here...
I took seven pages of notes.
But, long story short,
The most important way to live
With one of the many Lyme species' infections (at least 16?),
Is to improve the strength of the immune system for the individual -
With an emphasis on restorative measures
(in addition to symptomatic and/or heroic).
Lyme doesn't affect everyone the same way,
As is also the case with other chronic immune disorders
(Lupus,
Fibromyalgia,
Rheumatoid Arthritis,
Multiple Sclerosis,
ALS,
Alzheimers,
Parkinsons).
Something standing out in my mind right now
Is the research that shows
The entire microbiome spectrum is found in both healthy and diseased bodies,
But is more dense in a diseased body.
I strongly recommend learning more through
And about Dr. Rawls
Through his website, etc.
If there is interest,
I will go into more specifics for a restorative health approach...
(recovery essentials, gut support, microbiome balance, neuro inflammation, brain restoration...)
Wishing you wellness,
Until next time
(Really trying to have just one final entry sooner than later -
A mini-book....
We'll see.)
--Lisa ;)
Two nights ago I was lying awake -
In extreme pain -
Again -
Severe burning pain through my piriformis muscle
(right butt cheek)
And radiating down through my hip, thigh
And to my lower leg....
Very, very concerned that this hadn't resolved
In over two months...:
(Chiropractor,
Two Lyme Specialists,
Neurologist,
Acupuncture,
Physical Therapy,
Homeopathy....
All visits that have their place
In the comprehensive and multi-faceted approach
To healing in this rocky terrain
Post-Lyme
(7/15 Diagnosis),
But.... Why wasn't it getting better?
Again?
I prayed to the my mother and father
To show me the way -
A Way -
Guidance in Some Way.
I figured I would be going into PT yesterday after work
To express concern over ....
Abnormally developing cells along this most recent flareup -
And, to me, abnormally developing cells means....
Cancer? Of some form? (There are so many.)
But, instead I had good news to tell at PT -
Having learned something new, yet again:
Yesterday morning, it was tolerable to walk -
Much better than it had been
As I'd tried to get into a comfortable sleeping position the night before
With such burning pain in my right butt cheek.
So...
Rather than take my morning dose of ibuprofen
(or naproxen that I'd been trying most recently),
I .... didn't.
I figured I'd take some
If the pain became intolerable
During the day at work -
Walking back and forth across two schools.
(I've had more OTC pain meds in the past two months
Than I'd had in the past year or more.
Thought it was helping. I think it was, at one point.)
Lo and behold!
There was no burning pain through the day,
And which I'd been experiencing for weeks now.
Didn't use any, all day yesterday,
Nor any today so far.
I mean, I was achy and sore,
And had to walk slowly at the schools still
Or it got worse, but -
What a difference!
I see the light at the end of tunnel...
Soon mowing again?
And speed walking?
IN SUM: Anti-inflammatory pain meds were not helping the inflammation and dis-ease of the nerves associated with this flare up (sciatic, femoral), and, also the piriformis (also see Piriformis Syndrome) - and they actually were MAKING IT WORSE.
***************************************************
Thank you, Robin Soule,
For the link to the Rawls MD Webinar, "Decoding Lyme",
Which I attended Wednesday evening.
Dr. Rawls also wrote the book,
Unlocking Lyme,
About has personal experience with surviving Lyme Disease.
There is too much to review here...
I took seven pages of notes.
But, long story short,
The most important way to live
With one of the many Lyme species' infections (at least 16?),
Is to improve the strength of the immune system for the individual -
With an emphasis on restorative measures
(in addition to symptomatic and/or heroic).
Lyme doesn't affect everyone the same way,
As is also the case with other chronic immune disorders
(Lupus,
Fibromyalgia,
Rheumatoid Arthritis,
Multiple Sclerosis,
ALS,
Alzheimers,
Parkinsons).
Something standing out in my mind right now
Is the research that shows
The entire microbiome spectrum is found in both healthy and diseased bodies,
But is more dense in a diseased body.
I strongly recommend learning more through
And about Dr. Rawls
Through his website, etc.
If there is interest,
I will go into more specifics for a restorative health approach...
(recovery essentials, gut support, microbiome balance, neuro inflammation, brain restoration...)
Wishing you wellness,
Until next time
(Really trying to have just one final entry sooner than later -
A mini-book....
We'll see.)
--Lisa ;)
Sunday, April 29, 2018
Salt Baths & Anti Inflammatory Tonic
Good Day,
I think.
Thought it might be helpful to post this.
Wasn't planning to post for a while,
But the nature of the most recent flare up
With my joints and hip and all that
Seems to warrant it.
Just made my second tonic for the morning,
Because it seems to be putting the current problem at bay,
If just for a bit,
Until health professionals can help otherwise.
I had the tonic yesterday
And the day before.
It's simple,
And I used what I had on hand -
Based on what I've been having more on hand
Since all of this Lyme nonsense began:
In a glass or a mug or a cup:
Water, or the remains of a cup of tea
Bragg's Apple Cider Vinegar
Juice of half a lemon
Turmeric powder
Fresh ginger root - can mince
Stevia
(I have small powder packets,
Because I saw them on sale.
I know the connection with Lyme says to use liquid Stevia -
Probably because that's what was used in the study that drew the significant results.)
I don't really measure anything.
Doesn't matter the size of the lemon.
It's definitely more than a teaspoon of turmeric,
And more than a Tablespoon of the Bragg's.
I've taken to just chomping on a slice of the raw ginger root.
Pretty spicy.
Then wash away the spice burn with the drink.
All I know is that my leg and hip are slightly better just now....
After a couple days of this -
Along with ... (four or five now?/in the past two and a half days):
Hot baths with Epsom salts.
The one this morning was with more salts.
Maybe a total of 1 1/2 cups today -
In a deep tub -
Covers my body.
Also have been taking some OTC ibuprofen.
But sometimes that doesn't even seem to help.
This has been to remedy inflammation of my....:
Nerve endings?
Neuritis? (my cousin has some form of this),
Sciatica?
Piriformus (sp?) syndrome?
What started has acute pain radiating down my leg
Two months ago -
Turned to more dull pain -
And now is still a less acute pain in the piriformus;
And, much more oddly:
Wandering VIBRATIONS -
Like my cell phone is on vibrate?! -
In the muscle tissue
And under the skin -
In the hip,
Under the knee,
On the shin (where a patch of some form of inflammation can sometimes be seen),
In the calf - one side of it or the other -
Down to the toes of either foot,
And to the balls, ankles and heels sometimes, too.
My knee also alternates between seizing up and giving out.
Looked this up:
It's some of what is associated with Multiple Sclerosis.
So, my current question is:
Does Lyme Disease cause MS?
Both involve de-myelination of the protective sheaths on our neurons:
Which is how the body communicates about EVERYTHING.
My MRIs have revealed de-myelination.
People with Lyme have been misdiagnosed with MS.
What's it all about, Alfie?
***********************************************************
Also have been off my feet a lot
Friday evening through this morning -
Though did shop vac the down stairs yesterday.
Do need exercise.
Know that helps.
And will get plenty of walking
Repeatedly across two schools for my work week, starting tomorrow.
Also been alternating icing
(With frozen vegetable bags - cause not as cold as ice)
And heating with a pad....
Not sure if this helps or not.
The icing can help numb some of the pain;
And the heating can help warm it enough to stretch it out.
Sometimes it seems that this moves the vibration location slightly.
NEXT?
Homeopath and Acupuncture visits this week
(Haven't done either in a while),
A referral to an Orthopedic specialist...
Another Lyme Specialist (Infectious Disease Dr.),
Results from the VEP (Vision Evoked Potential),
And Cervical MRI
(was already told it showed that my neck is inflamed.... interesting... doesn't really feel that way),...,
AND:
This week, the Candida Cleanse....
Hopefully get rid of any Candida overgrowth -
Which may be adversely affecting my overall health -
All of this -
All of the inflammation -
All of the migratory patterns of this dis-ease....
And Candida over growth is often the result of being on antibiotics.
Doxy, for Lyme, is a pretty strong antibiotic.
I've been on it three times since the Lyme Dx.
Maybe four.
All of the bacteria is affected by antibiotics.
When the good bacteria is killed off, too,
The Candida can flourish.
This can also contribute to Leaky Gut Syndrome.
Do you crave sugar? carbs?
Could be Candida overgrowth.
************************************
If I lose 15 pounds and look really great -
It's not like I have a choice. And I'd rather not talk about it.
But if you do see me out and about, you could ask about my kids,
or my job(s),
or the gardens,
or what music I'm enjoying,
or what's going for the day or the week or the weekend.
Just please don't ask me about the Lyme.
It's already taken over my life.
That's why I do this blog.
Leave it all in the blog.
Maybe it helps someone else.
Ah, well...
This is at almost three years since the Lyme Diagnosis.
Quite a rocky terrain to navigate.
Wishing you all well.
Peace out,
Lisa
I think.
Thought it might be helpful to post this.
Wasn't planning to post for a while,
But the nature of the most recent flare up
With my joints and hip and all that
Seems to warrant it.
Just made my second tonic for the morning,
Because it seems to be putting the current problem at bay,
If just for a bit,
Until health professionals can help otherwise.
I had the tonic yesterday
And the day before.
It's simple,
And I used what I had on hand -
Based on what I've been having more on hand
Since all of this Lyme nonsense began:
In a glass or a mug or a cup:
Water, or the remains of a cup of tea
Bragg's Apple Cider Vinegar
Juice of half a lemon
Turmeric powder
Fresh ginger root - can mince
Stevia
(I have small powder packets,
Because I saw them on sale.
I know the connection with Lyme says to use liquid Stevia -
Probably because that's what was used in the study that drew the significant results.)
I don't really measure anything.
Doesn't matter the size of the lemon.
It's definitely more than a teaspoon of turmeric,
And more than a Tablespoon of the Bragg's.
I've taken to just chomping on a slice of the raw ginger root.
Pretty spicy.
Then wash away the spice burn with the drink.
All I know is that my leg and hip are slightly better just now....
After a couple days of this -
Along with ... (four or five now?/in the past two and a half days):
Hot baths with Epsom salts.
The one this morning was with more salts.
Maybe a total of 1 1/2 cups today -
In a deep tub -
Covers my body.
Also have been taking some OTC ibuprofen.
But sometimes that doesn't even seem to help.
This has been to remedy inflammation of my....:
Nerve endings?
Neuritis? (my cousin has some form of this),
Sciatica?
Piriformus (sp?) syndrome?
What started has acute pain radiating down my leg
Two months ago -
Turned to more dull pain -
And now is still a less acute pain in the piriformus;
And, much more oddly:
Wandering VIBRATIONS -
Like my cell phone is on vibrate?! -
In the muscle tissue
And under the skin -
In the hip,
Under the knee,
On the shin (where a patch of some form of inflammation can sometimes be seen),
In the calf - one side of it or the other -
Down to the toes of either foot,
And to the balls, ankles and heels sometimes, too.
My knee also alternates between seizing up and giving out.
Looked this up:
It's some of what is associated with Multiple Sclerosis.
So, my current question is:
Does Lyme Disease cause MS?
Both involve de-myelination of the protective sheaths on our neurons:
Which is how the body communicates about EVERYTHING.
My MRIs have revealed de-myelination.
People with Lyme have been misdiagnosed with MS.
What's it all about, Alfie?
***********************************************************
Also have been off my feet a lot
Friday evening through this morning -
Though did shop vac the down stairs yesterday.
Do need exercise.
Know that helps.
And will get plenty of walking
Repeatedly across two schools for my work week, starting tomorrow.
Also been alternating icing
(With frozen vegetable bags - cause not as cold as ice)
And heating with a pad....
Not sure if this helps or not.
The icing can help numb some of the pain;
And the heating can help warm it enough to stretch it out.
Sometimes it seems that this moves the vibration location slightly.
NEXT?
Homeopath and Acupuncture visits this week
(Haven't done either in a while),
A referral to an Orthopedic specialist...
Another Lyme Specialist (Infectious Disease Dr.),
Results from the VEP (Vision Evoked Potential),
And Cervical MRI
(was already told it showed that my neck is inflamed.... interesting... doesn't really feel that way),...,
AND:
This week, the Candida Cleanse....
Hopefully get rid of any Candida overgrowth -
Which may be adversely affecting my overall health -
All of this -
All of the inflammation -
All of the migratory patterns of this dis-ease....
And Candida over growth is often the result of being on antibiotics.
Doxy, for Lyme, is a pretty strong antibiotic.
I've been on it three times since the Lyme Dx.
Maybe four.
All of the bacteria is affected by antibiotics.
When the good bacteria is killed off, too,
The Candida can flourish.
This can also contribute to Leaky Gut Syndrome.
Do you crave sugar? carbs?
Could be Candida overgrowth.
************************************
If I lose 15 pounds and look really great -
It's not like I have a choice. And I'd rather not talk about it.
But if you do see me out and about, you could ask about my kids,
or my job(s),
or the gardens,
or what music I'm enjoying,
or what's going for the day or the week or the weekend.
Just please don't ask me about the Lyme.
It's already taken over my life.
That's why I do this blog.
Leave it all in the blog.
Maybe it helps someone else.
Ah, well...
This is at almost three years since the Lyme Diagnosis.
Quite a rocky terrain to navigate.
Wishing you all well.
Peace out,
Lisa
Sunday, April 22, 2018
At 6 Months/Part III: Nutrition Consult, & Fast Forward to Chicago 4-18
At Six Months Part III 'Post'? Lyme, January 2016:
***********************************************************
FAST FORWARD TO
4-15-18
Well, well, well... it just keeps snowing...
~Took an experimental trip...
To Chicago...
See how I'd do...
With the intermittent confusion and all...
Getting a rental car...
Got a hotel close to the airport...
Visited my alma mater - hadn't been since graduated 33 years ago in June...
Visiting a close family friend...
As Long as I stay in the moment -
Keep aware of the present,
And get enough rest and eat right...
So far so good.
Though I did wander a bit around the airport car rental lot trying to find my way out.
And very stressed the first night here when the hotel shuttle didn't pick me up
They kept saying it would be five minutes...and that it was on its way....
Two hours after my flight arrived
I finally took a taxi.
The hotel is two miles from the airport.
They reimbursed my taxi, and discounted the first night's stay.
But still. The damage was done.
I felt like I was in the Twilight Zone.
~Wasn't sure about the flight from the East coast....
Have a strange sensation in my right shin -
Moves around a bit to the side and back and up and down throughout the day(s)....
Started as part of 'Sciatica' -
And the chiropractor didn't help at all -
Actually caused more problems -
Cracking my neck
didn't go there for my neck)
And then I couldn't roll down the window of my mother's old 'back up' car...
Sooooo....
A year ago March,
I was bedridden,
Long story short...
(Lung and GI flareup).
This year is better -
But the Flare up this time appears to be my joints.
Did a number on my hip -
Wearing the wrong footwear for the walking I do at work
Across two schools throughout each day -
And then over did it at the gym on the treadmill...:
Half hour on a very steep incline...
And haven't been the same since -
Been at least 6 weeks now.
Hoping to have a PT help.
It did years ago with a lower back issue.
Have been stretching throughout each day...
Would wake me up at night -
The sharp pain at my hip mostly -
Also some under the knee.
The chiro said lumbar radiculopathy (among other things) - AKA 'Sciatica'.
Took more OTC generic pain meds
In the past four weeks than have in .... don't know how long.
UPDATE:
Been waiting for a return call from my Dr. in Mass...
Should I go to the ER?
Is it a blood clot in my lower right leg?
Wouldn't know what it is or what it looks like.
Checked online.
Called to friends. One is a nurse.
Going to bed not sure if I'm going to wake up.
Pray to my ancestors...
Vocally tone.
Walking lots on the last two days in the cold and wet certainly hasn't helped.
But maybe it's the post-inflammatory stuff
That is part and parcel to what has been my experience with Post Lyme Syndrome...
Nerve damage....
Related to the radiating nerve stuff of sciatica from overdoing it at the gym.
Lisa, a nurse friend,
Said the deep muscle of the butt is also something that can get inflamed -
And then misinterpreted for sciatica.
She also helped with a nighttime affirmation:
"My body functions perfectly".... and texted this morning:
"Are you still alive?"
Glad she was checking in - across the many miles.
And it gave me a chuckle.
So it's off to the Chicago ER I go.
To rule out a blood clot -
Which can be very serious.
I know of at least two people who have died from them.
***************************************
NUTRITION CONSULT NOTES
with Cathy Sloan Gallagher 1/21/16 at Good Life in West Bridgewater, MA
with Cathy Sloan Gallagher 1/21/16 at Good Life in West Bridgewater, MA
Started Probiotic Supplement -
Only took one - Will wait a bit -
Head was more queasy dizzy after.
Only took one - Will wait a bit -
Head was more queasy dizzy after.
(With Armour Thyroid,
Baby aspirin,
Single pain pills each day-aceteminophen, ibuprophen,
And Astra 8 for asthma)
Baby aspirin,
Single pain pills each day-aceteminophen, ibuprophen,
And Astra 8 for asthma)
Gut and Brain connected -
And compromised/still healing from the 25 days of Doxicyclene In July -
Food not enough now
(Me with yogurt and sauerkraut)
And compromised/still healing from the 25 days of Doxicyclene In July -
Food not enough now
(Me with yogurt and sauerkraut)
Cathy recommends cutting out Carbs and Dairy for five days and seeing how feel
Have Good Fat -
NOT low fat -
Body uses good fat better -
Coconut oil is easier to digest
NOT low fat -
Body uses good fat better -
Coconut oil is easier to digest
Bacteria feeds on sugar
Honey ok (is natural antibiotic) if light (is still sugar)
ANY carbs yields glucose (even whole grains)
And increased glucose engages the adrenals
And links between gluten and asthma
For Lyme health, have to address adrenal health
(or the body is over stressed, and affects the immune system etc.)
(or the body is over stressed, and affects the immune system etc.)
Adrenals love Sea Salt - celtic gray or pink himalayan
Google SOLE recipe - have in a.m. with 8 oz. of water.
Decrease stress - including excess exercise - need to rest - still healing
Whole Food Vitamin C (not processed, NOT ascorbic acid),
e.g. New Chapter or Garden of Life
e.g. New Chapter or Garden of Life
also. Camu Camu or Aserolo (sp?) 500 mg/Day
“Cape Cod Nutrition”: (Route 138 to Right at Light by CVS shopping center )
Acid reflux and heartburn: gall bladder congestion
Gall bladder and liver are connected
(Janet has treated my spleen and liver for years with acupuncture)
(Janet has treated my spleen and liver for years with acupuncture)
Bragg Apple Cider Vinegar -
Teaspoon ten minutes before a meal
Teaspoon ten minutes before a meal
Beet Kvass 4 oz/day -
On Cathy's website (beets, salt, water, can add lemon and ginger) - and ferment
On Cathy's website (beets, salt, water, can add lemon and ginger) - and ferment
If still a problem with brain fog and thinking after 2 months of pro-biotics, then meet with her:
Food Journal, 300 questions on line
(gives a chart of up and down health issues and diet needs),
(She palpates various body organs for sensitivities)
(gives a chart of up and down health issues and diet needs),
(She palpates various body organs for sensitivities)
Hair mineral analysis ($185)
RE: ablation and heavy bleeding (needs liver support, liver diet)
***********************************************************
FAST FORWARD TO
Well, well, well... it just keeps snowing...
~Took an experimental trip...
To Chicago...
See how I'd do...
With the intermittent confusion and all...
Getting a rental car...
Got a hotel close to the airport...
Visited my alma mater - hadn't been since graduated 33 years ago in June...
Visiting a close family friend...
As Long as I stay in the moment -
Keep aware of the present,
And get enough rest and eat right...
So far so good.
Though I did wander a bit around the airport car rental lot trying to find my way out.
And very stressed the first night here when the hotel shuttle didn't pick me up
They kept saying it would be five minutes...and that it was on its way....
Two hours after my flight arrived
I finally took a taxi.
The hotel is two miles from the airport.
They reimbursed my taxi, and discounted the first night's stay.
But still. The damage was done.
I felt like I was in the Twilight Zone.
~Wasn't sure about the flight from the East coast....
Have a strange sensation in my right shin -
Moves around a bit to the side and back and up and down throughout the day(s)....
Started as part of 'Sciatica' -
And the chiropractor didn't help at all -
Actually caused more problems -
Cracking my neck
didn't go there for my neck)
And then I couldn't roll down the window of my mother's old 'back up' car...
Sooooo....
A year ago March,
I was bedridden,
Long story short...
(Lung and GI flareup).
This year is better -
But the Flare up this time appears to be my joints.
Did a number on my hip -
Wearing the wrong footwear for the walking I do at work
Across two schools throughout each day -
And then over did it at the gym on the treadmill...:
Half hour on a very steep incline...
And haven't been the same since -
Been at least 6 weeks now.
Hoping to have a PT help.
It did years ago with a lower back issue.
Have been stretching throughout each day...
Would wake me up at night -
The sharp pain at my hip mostly -
Also some under the knee.
The chiro said lumbar radiculopathy (among other things) - AKA 'Sciatica'.
Took more OTC generic pain meds
In the past four weeks than have in .... don't know how long.
UPDATE:
Been waiting for a return call from my Dr. in Mass...
Should I go to the ER?
Is it a blood clot in my lower right leg?
Wouldn't know what it is or what it looks like.
Checked online.
Called to friends. One is a nurse.
Going to bed not sure if I'm going to wake up.
Pray to my ancestors...
Vocally tone.
Walking lots on the last two days in the cold and wet certainly hasn't helped.
But maybe it's the post-inflammatory stuff
That is part and parcel to what has been my experience with Post Lyme Syndrome...
Nerve damage....
Related to the radiating nerve stuff of sciatica from overdoing it at the gym.
Lisa, a nurse friend,
Said the deep muscle of the butt is also something that can get inflamed -
And then misinterpreted for sciatica.
She also helped with a nighttime affirmation:
"My body functions perfectly".... and texted this morning:
"Are you still alive?"
Glad she was checking in - across the many miles.
And it gave me a chuckle.
So it's off to the Chicago ER I go.
To rule out a blood clot -
Which can be very serious.
I know of at least two people who have died from them.
***************************************
Until next time - planning to sign off for a while after that.
Wishing you peace and wellness.
--Lisa
Wishing you peace and wellness.
--Lisa
Sunday, April 8, 2018
Side Bars: Visual Agnosia, Doing Taxes, Neuro Dr., Wallander
Oy and Double Oy...
Doing taxes...
Been doing them for 40 years....
Started mid March -
And that was after I'd already sorted countless receipts
And tried to figure out what new forms, if any, I had to do this year,
Due to my mother's death.
It was challenging to do new forms for my daughter's college stuff the past two years...
Turns out there are 10 Federal forms and six state forms...
I think that's it for this year. I
've already redone the 'final' 1040 twice -
Which also meant fixing other ones connected to the 1040.
Thought I was in the home stretch.
And now I have to do it again -
Which means I have to redo most of both the state and the federal forms.
I keep missing things.
I add and re add.
And pencil in and pen it in...
And tried a little bit of white out,
But that's not clean enough.
And this is not good for my eyeballs and brain.
So I try not to stress about it.
It is what it is.
I know people will say go to an accountant.
An accounting friend gave me some advice.
I visited H&R Block and got some advice there.
To hand over everything now for someone else to do doesn't make sense.
Years ago - twice, I went to accountants to have taxes done.
Each said that the IRS would love me because I keep such good records...
So I do my own.
At some point I will go to someone else to do them -
Once I don't have to try and explain everything I've done and why...
When I have fewer forms -
And then not for three years after that -
Cause they can always ask for three years' returns.
If there's been mistakes over the years - they've been corrected and adjusted for by the government.
Side bar:
I was just looking for a can of coconut milk
To make the ginger carrot soup today
That's part of my supervised health cleansing diet this week
(Did a year ago under guidance of Cathy Sloan Gallagher -
And twice since then on my own-
Not quite as successful those times)...
COULD NOT FIND the can -
I knew it was in the lazy susan cabinet.
I remember putting it there after buying it yesterday -
And know that there was a can in there before that, too.
COULD NOT FIND THEM.
I asked my husband if he might look.
It was right there.
As soon as you open the door.
Enter stage right: VISUAL AGNOSIA:
It's hard to identify a single object in among a bunch of stuff.
I don't 'see' it.
So gave my brain a boost on sardines and multigrain toast with kim chi...
And heading in for ....
Round....50?
Of my taxes.
Side Bar:
Makes me think of the Netflix series, 'Wallander".
Kenneth Branagh plays a detective who develops Alzheimers,
After watching his father succumb to it.
I can relate.
W. is trying to organize his thoughts to solve a missing person case-
With many crumpled up pieces of paper littered about.
My office looks like a bomb hit it:
Piles and and piles of papers and files,
And cards
And music stuff, An
d garden stuff
And sewing stuff....
And I plan to get to all of it,
Bit by bit -
After the flippin' taxes are done.
While I don't think that I have Alzheimers
(It's not in my family genes)
I do wonder if Lyme Disease speeds up the aging process?
People try to say that the forgetfulness, etc, etc, etc, is due to aging.
No.
I wasn't like this before the Lyme Disease.
No where to anything like the degree of everything that's hit me
Since the Lyme.
Side Bar:
Had a neuro visit two weeks ago -
Dr. wants to rule out Multiple Sclerosis
And Neurological Lyme.
And has a bunch more tests planned.
I might not do all that's being asked.
To what end?
First test is the VEP:
Visual evoked potential...
Have to look at a checkerboard screen for forty five minutes.
I'm concerned about that literally making me sick -
Setting off an ocular migraine.
Called the office about it.
No one got back with an answer.
So I'll just close my eyes at some point I guess,
And see what that tells them.
...Until next time,
Still planning to head back to the six month point post Lyme:
Winter of 2016,
With a nutrition consult
And starting to chart my symptoms after my visit with J....
So much going on then.
Peace out,
Wishing you wellness.
Lisa
Doing taxes...
Been doing them for 40 years....
Started mid March -
And that was after I'd already sorted countless receipts
And tried to figure out what new forms, if any, I had to do this year,
Due to my mother's death.
It was challenging to do new forms for my daughter's college stuff the past two years...
Turns out there are 10 Federal forms and six state forms...
I think that's it for this year. I
've already redone the 'final' 1040 twice -
Which also meant fixing other ones connected to the 1040.
Thought I was in the home stretch.
And now I have to do it again -
Which means I have to redo most of both the state and the federal forms.
I keep missing things.
I add and re add.
And pencil in and pen it in...
And tried a little bit of white out,
But that's not clean enough.
And this is not good for my eyeballs and brain.
So I try not to stress about it.
It is what it is.
I know people will say go to an accountant.
An accounting friend gave me some advice.
I visited H&R Block and got some advice there.
To hand over everything now for someone else to do doesn't make sense.
Years ago - twice, I went to accountants to have taxes done.
Each said that the IRS would love me because I keep such good records...
So I do my own.
At some point I will go to someone else to do them -
Once I don't have to try and explain everything I've done and why...
When I have fewer forms -
And then not for three years after that -
Cause they can always ask for three years' returns.
If there's been mistakes over the years - they've been corrected and adjusted for by the government.
Side bar:
I was just looking for a can of coconut milk
To make the ginger carrot soup today
That's part of my supervised health cleansing diet this week
(Did a year ago under guidance of Cathy Sloan Gallagher -
And twice since then on my own-
Not quite as successful those times)...
COULD NOT FIND the can -
I knew it was in the lazy susan cabinet.
I remember putting it there after buying it yesterday -
And know that there was a can in there before that, too.
COULD NOT FIND THEM.
I asked my husband if he might look.
It was right there.
As soon as you open the door.
Enter stage right: VISUAL AGNOSIA:
It's hard to identify a single object in among a bunch of stuff.
I don't 'see' it.
So gave my brain a boost on sardines and multigrain toast with kim chi...
And heading in for ....
Round....50?
Of my taxes.
Side Bar:
Makes me think of the Netflix series, 'Wallander".
Kenneth Branagh plays a detective who develops Alzheimers,
After watching his father succumb to it.
I can relate.
W. is trying to organize his thoughts to solve a missing person case-
With many crumpled up pieces of paper littered about.
My office looks like a bomb hit it:
Piles and and piles of papers and files,
And cards
And music stuff, An
d garden stuff
And sewing stuff....
And I plan to get to all of it,
Bit by bit -
After the flippin' taxes are done.
While I don't think that I have Alzheimers
(It's not in my family genes)
I do wonder if Lyme Disease speeds up the aging process?
People try to say that the forgetfulness, etc, etc, etc, is due to aging.
No.
I wasn't like this before the Lyme Disease.
No where to anything like the degree of everything that's hit me
Since the Lyme.
Side Bar:
Had a neuro visit two weeks ago -
Dr. wants to rule out Multiple Sclerosis
And Neurological Lyme.
And has a bunch more tests planned.
I might not do all that's being asked.
To what end?
First test is the VEP:
Visual evoked potential...
Have to look at a checkerboard screen for forty five minutes.
I'm concerned about that literally making me sick -
Setting off an ocular migraine.
Called the office about it.
No one got back with an answer.
So I'll just close my eyes at some point I guess,
And see what that tells them.
...Until next time,
Still planning to head back to the six month point post Lyme:
Winter of 2016,
With a nutrition consult
And starting to chart my symptoms after my visit with J....
So much going on then.
Peace out,
Wishing you wellness.
Lisa
Tuesday, March 13, 2018
At 6 Months/Part II - Jan. 2016: Meeting with J, And 2018 Update
It took a while to get this out (Home with NorEaster #3 in the past 10 days...)
February, 2018 -
With temps dancing back and forth:
Below freezing.... and to the 50s and 60s and back again .... and on and on...
Glad to have February vacation...
Sledded - and then tanned at the beach...
Kind of zapped in the frontal lobe -
And struggling with maintenance of asthma -
Trying to get off of the two drugs that I know are bad for me:
Symbicort (which really helped when I needed to be able breathe),
And Singulair...
Really draggin'.... kind of despondent....
Hoping the cleanse will help -
Basically just a good diet -
Knowing that the role of sugar is just awful....
And carbs - which metabolize to glucose ...
High glucose....
Bartonella test!
Finally, thank you Jen, Nurse Practitioner!
She had Lyme.
She has some semblance of understanding.
Had MRI#3 last week, too:
Message from the doctor's office today reported that it's "stable" -
With "no lesion", and the white matter changes aren't significant.
Say what?!
Any changes in the white matter of my brain are a concern to me.
The brain is supposed to be grey matter.
I asked for clarification on what the changes of the white matter are...
Where they are?
Hoping to hear back sooner than later....oy.
Another Aside:
"Scribing' (writing) for a student at work:
Went back to it yesterday.
I'd written... "and ride bugs",
When it should have been 'and ride bikes'....
And this wasn't a typo... was clearly written carefully in my handwriting.
I remembered the activity with the student.
And my brain obviously just went - phfft! for a bit there.
I just stared at it...
The student is asking, "bugs?" as he looked at it with me.
oy.
So I remind myself that the brain can make new connections -
So much is underused...
And remind myself to respect and be mindful of my threshold -
Accepting that almost no one will understand that.
Back to the task at hand,
At 6 Months - Part II: Visit with J
February, 2018 -
With temps dancing back and forth:
Below freezing.... and to the 50s and 60s and back again .... and on and on...
Glad to have February vacation...
Sledded - and then tanned at the beach...
Kind of zapped in the frontal lobe -
And struggling with maintenance of asthma -
Trying to get off of the two drugs that I know are bad for me:
Symbicort (which really helped when I needed to be able breathe),
And Singulair...
Really draggin'.... kind of despondent....
Hoping the cleanse will help -
Basically just a good diet -
Knowing that the role of sugar is just awful....
And carbs - which metabolize to glucose ...
High glucose....
Bartonella test!
Finally, thank you Jen, Nurse Practitioner!
She had Lyme.
She has some semblance of understanding.
Had MRI#3 last week, too:
Message from the doctor's office today reported that it's "stable" -
With "no lesion", and the white matter changes aren't significant.
Say what?!
Any changes in the white matter of my brain are a concern to me.
The brain is supposed to be grey matter.
I asked for clarification on what the changes of the white matter are...
Where they are?
Hoping to hear back sooner than later....oy.
Another Aside:
"Scribing' (writing) for a student at work:
Went back to it yesterday.
I'd written... "and ride bugs",
When it should have been 'and ride bikes'....
And this wasn't a typo... was clearly written carefully in my handwriting.
I remembered the activity with the student.
And my brain obviously just went - phfft! for a bit there.
I just stared at it...
The student is asking, "bugs?" as he looked at it with me.
oy.
So I remind myself that the brain can make new connections -
So much is underused...
And remind myself to respect and be mindful of my threshold -
Accepting that almost no one will understand that.
Back to the task at hand,
At 6 Months - Part II: Visit with J
JANUARY, 2016
A friend offered to arrange a meeting between myself and a friend of hers,
Who has suffered from undiagnosed Chronic Lyme Disease for years.
J doesn’t like to speak about it, because "people will think I’m crazy".
Again, neurological symptoms don't present so much as 'sick'.
J is a professor at a local university, along with her husband.
She had symptoms for a while before being diagnosed.
She was getting VERY disoriented.
She got lost going to her friend’s house.
She got lost in the yoga room –
Just turning around in the room,
And she didn't know where she was.
(That's happened to me.
I have to be so much in the moment...
Ever present:
'Where am I now?', I often ask myself.)
J referred me to many authors, books and other references.
She is very knowledgeable on the surviving Lyme,
because she’s had to navigate the road without much help from the medical field.
A friend offered to arrange a meeting between myself and a friend of hers,
Who has suffered from undiagnosed Chronic Lyme Disease for years.
J doesn’t like to speak about it, because "people will think I’m crazy".
Again, neurological symptoms don't present so much as 'sick'.
J is a professor at a local university, along with her husband.
She had symptoms for a while before being diagnosed.
She was getting VERY disoriented.
She got lost going to her friend’s house.
She got lost in the yoga room –
Just turning around in the room,
And she didn't know where she was.
(That's happened to me.
I have to be so much in the moment...
Ever present:
'Where am I now?', I often ask myself.)
J referred me to many authors, books and other references.
She is very knowledgeable on the surviving Lyme,
because she’s had to navigate the road without much help from the medical field.
References:
Brian
Rosen Book - How To Deal with Lyme
(I couldn’t find any such author)
(I couldn’t find any such author)
Stephen
Harrod Buhner - Healing Lyme, Natural Treatments for Lyme
Co-Infections
(I could
not read these books –
Made me feel worse…
With me in the neurological state I was in,
it just seemed like endless listings
Of symptoms
And conditions
And long, confusing names of treatments for those symptoms….
There didn’t seem to be a place to start.)
Made me feel worse…
With me in the neurological state I was in,
it just seemed like endless listings
Of symptoms
And conditions
And long, confusing names of treatments for those symptoms….
There didn’t seem to be a place to start.)
The
“Lyme Times” magazine
Under Our Skin - award winning documentary on Netflix
addresses the FDA problems and
insurance companies big business
and the strain affected by Lyme vaccine NOT
COUNTED in tests (because it didn’t work!?)
And
antibiotics only works on specific bands (strain) of the Lyme Bacterium
Per J,
four states still prosecute for treating/testing Lyme (?!).
This is addressed in Under Our Skin.
This is addressed in Under Our Skin.
J goes
to Dr. H in a Boston suburb.
Her meds
currently include:
Cefdinir
- 300 mg. daily
SMZ-TMD
DS - 800-160 mg daily+
Metformin
creates reaction that is life prolonging.
Need
B-12 - can’t take too much (unless you drown in a pool of it) -
She
lives on B-12
German 'Wobenzy': for joint health and more - takes all the time - with antibiotics
especially
Probiotics!
NAC for
energy - opens arteries
Garlic!
J's tests
go to a lab in CA: IGX -
Specializing in Lyme and tick borne diseases 20+ years.
Not connected to FDA, cause FDA is connected to big companies,
Which have profit as main concern.
Specializing in Lyme and tick borne diseases 20+ years.
Not connected to FDA, cause FDA is connected to big companies,
Which have profit as main concern.
IGX was investigated because 'too many cases of Lyme Diagnoses' -
But then case dismissed -
Because they were all legitimate diagnoses.
But then case dismissed -
Because they were all legitimate diagnoses.
Fish
Test/Bartonella is part of the lab panel -
Not usually done in other tests across the county - cause $300
Not usually done in other tests across the county - cause $300
Lyme is
gone from the blood - so how check?
Activity is determined by the lab bands - and symptoms chart
Activity is determined by the lab bands - and symptoms chart
Effective
Lyme Test looks at how the rest of the body is functioning.
Many different levels and organs and processes looked at:
WBC, RBC, etc etc etc:
“Profile of Presence”
Many different levels and organs and processes looked at:
WBC, RBC, etc etc etc:
“Profile of Presence”
(My August lab work showed high Glucose,
But no one mentioned that -
Could be antibiotics, J said.)
But no one mentioned that -
Could be antibiotics, J said.)
Issues:
LP(a),
or Lp(s) - Lipoproteins measured -
Cause blood thickens -
And then heart problems
Cause blood thickens -
And then heart problems
Should
be less than 10 -
J's is about 276 (blood clotting)
J's is about 276 (blood clotting)
Dr.
Sotirios Tsimikas (San Diego) researches lipoproteins
Depression
- and not wanting to do anything, per J
Germany
has best research on Lyme
Lyme
likes viscosity -
e.g. of the brain, joints, GI tract - not in the blood
e.g. of the brain, joints, GI tract - not in the blood
Article
by woman with hypersound sensitivity -
Who used to love music.
Now has ear worms that are maddening -
And can’t listen to husband’s music choices.
He only ‘gets it’ if she has a seizure.
Who used to love music.
Now has ear worms that are maddening -
And can’t listen to husband’s music choices.
He only ‘gets it’ if she has a seizure.
.... Now filling out the Lyme symptom chart - from J's Dr. H....
Weekly - on Thursdays...
Seems my symptoms flare up every month or so.
(More later on the chart.)
Did I already write about the Pleurisy at Christmas?
Knee problems at Thanksgiving?
Middle/upper back pain past week or so?
Weekly - on Thursdays...
Seems my symptoms flare up every month or so.
(More later on the chart.)
Did I already write about the Pleurisy at Christmas?
Knee problems at Thanksgiving?
Middle/upper back pain past week or so?
Was the elbows before the knees...
Already having tennis elbow from music therapy instrument lugging....
It seems that stressors already in the body are aggravated by Lyme -
The little bugger:
A corkscrew spyrochete that never really gets eradicated.
Why would it,
When it’s a corkscrew, and can adapt so well?
Always still lodged in the body’s viscous tissue in some form.
Already having tennis elbow from music therapy instrument lugging....
It seems that stressors already in the body are aggravated by Lyme -
The little bugger:
A corkscrew spyrochete that never really gets eradicated.
Why would it,
When it’s a corkscrew, and can adapt so well?
Always still lodged in the body’s viscous tissue in some form.
And antibiotics???
Not so sure about that -
But she also had Lyme years before being diagnosed.
I think I was diagnosed fairly quickly.
I really think that a HUGE factor in my visual problems now
Has to do with having an eye exam with dilating drops
And VERY BRIGHT lights into those dilated eyes while on Doxy.
My eyes have never recovered since then.
Wonder if they might be able to at some point.
(Still haven't as of 3/18, or as of 2/20)
Not so sure about that -
But she also had Lyme years before being diagnosed.
I think I was diagnosed fairly quickly.
I really think that a HUGE factor in my visual problems now
Has to do with having an eye exam with dilating drops
And VERY BRIGHT lights into those dilated eyes while on Doxy.
My eyes have never recovered since then.
Wonder if they might be able to at some point.
(Still haven't as of 3/18, or as of 2/20)
RE: SUPPLEMENTS
Started the neurotransmitter supplement, TrueCalm on Jan
8th.
1 tablet a day - includes GABA, magnesium, niacin, valerian, and amino acids
1 tablet a day - includes GABA, magnesium, niacin, valerian, and amino acids
Also will be starting MigRelief soon.- Riboflavin...
(MigRelief didn’t work – cause of the caffeine in it. Contraindicated for ocular migraines..)
J and her friend Fs' parting words to me hit home:
'Nnot to be angry with this'...
To embrace it, almost.
It is what it is.
And I have a voice.
A different kind of voice now...
Not sure if I’m up for making another CD, actually.
We’ll see what happens with that.
Can’t imagine ‘jamming’ with my current music partner,
The way he likes to amp everything.
It was already too loud for me, pre-Lyme,
When B would come play drums -
He didn’t know how to go with it as more of a jazz drummer -
Which can be much quieter,
With jazz brushes -
NOT ROCK AND ROLL DRUMMING.
*********************************
So here, now on March 13, 2018, I'm not going to condense or summarize those above notes from my visit with J any more than this. Hope it can still be helpful for someone.
And here again, on 2/10/20, did do some editing - just to make it more readable (shortened most lines. It's more like prose now for all of the edits I've done to the posts. Will get to all of them. Working backwards.
'Nnot to be angry with this'...
To embrace it, almost.
It is what it is.
And I have a voice.
A different kind of voice now...
Not sure if I’m up for making another CD, actually.
We’ll see what happens with that.
Can’t imagine ‘jamming’ with my current music partner,
The way he likes to amp everything.
It was already too loud for me, pre-Lyme,
When B would come play drums -
He didn’t know how to go with it as more of a jazz drummer -
Which can be much quieter,
With jazz brushes -
NOT ROCK AND ROLL DRUMMING.
*********************************
So here, now on March 13, 2018, I'm not going to condense or summarize those above notes from my visit with J any more than this. Hope it can still be helpful for someone.
And here again, on 2/10/20, did do some editing - just to make it more readable (shortened most lines. It's more like prose now for all of the edits I've done to the posts. Will get to all of them. Working backwards.
Tuesday, January 30, 2018
At 6 Months/Part I, Jan 2016: Visits with Neurologists, Journal, & Letter to Editor
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.)
===========
*************************************************************
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 3rd time since last June –
Sat in back –
SO noisy going in
(Harry Belafonte recording of Turn the World Around to sing later)
Only 3rd 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
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
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?
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)
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
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’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
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.
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
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
utterance blunders
1/11/16
Started a new supplement Fri
–
Seems to be helping?
A neuro-transmitter supplement called TrueCalm
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)
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 (1st
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.
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.
*****************************************************************
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.
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.
\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.
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
*************************
On Sep 8, 2015, at 3:00 PM, Lisa Rue
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 27th at 11:00. First available….
I called the clinic. They scheduled an appointment for October 27th 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
***********************************************
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.
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
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
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
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
************************************************
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
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
To
Dr. L
CC
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...
******************************************
Might be the Super Moon.
Until next time,
Good health to you and yours,
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.
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
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