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.
