Sunday, March 1, 2015

Game Changer?

Here is the link to the actual science paper on CFS/ME/SEID causing the immune system to go into hyperdrive during the first three years of illness.  Hopefully this will be the game changer for my illness.  We now have a potential biomarker if the illness is caught within the first three years.  Now to wait not so patiently for treatments.

Saturday, February 28, 2015


Normally the life and death of celebrities both entertainers and scientists don't bother me much.  However, the recent loss of Leonard Nimoy has affected me deeply.  I'm old enough to have watched the original Star Trek.  I watched for many many years often seeing episodes multiple times.  The show had a profound influence in shaping who I am now.  I came to understand the absurdity of racism, the value of sentient life and the wonders of science and space.  Spock was my favorite character and from what I can remember the first person that I ever admired.  He was smart, knew tons of science and had no emotions.  Having an extremely sexist father emotions weren't valued but rather seen as a weakness so I aspired to be like Spock.  I wanted to be devoid of emotion but smart as a whip and know lots about science.  He heavily influenced the core of my being while I was at an impressionable age.

Oddly I never knew much about Leonard Nimoy the person.  My husband had met him once about ten years ago when he sat in front of him with his friend William Shatner.  Hubs was mixing sound for a Klezmer band at the time.  That was the first time I found out about his Jewish roots.  Since his passing I seen some of his gorgeous photography and found out that he was a supporter of the fat activist movement.

Each time someone posts something about him I cry.  I am in mourning.  He was such a huge influence on the way I am.  I can never thank him enough.

Astronaut Terry Virts captured this photo from the International Space Station flying over Boston, where Leonard Nimoy was born.

"May the Lord bless and keep you and may the Lord cause his countenance to shine upon you. May the Lord be gracious unto you and grant you peace." The accompanying spoken blessing, "Live long and prosper."

Wednesday, February 25, 2015


CFS/ME/SEID just ate my thyroid.  It is no longer working very well and I started taking synthroid a few days ago.  Of course this has sent me into a mega relapse.  I have about a 2-3 hour window before crashing hard.  Last night I went to bed at 8pm and slept for 2.5 hours and went to bed at my regular 5am bedtime just as tired as if I hadn't slept.  I'm about to go to bed again and it is only 8:30pm but I can't keep my eyes open.  So here are a couple of articles on Hypothyroidism that I want to save for later when I can read and remember things again.

Tuesday, February 24, 2015

Ms Period Meet Mr ME

Ever since I contracted CFS/ME/SEID my period has been wonky.  There has been quite a bit of debate among my doctors as to whether it is CFS or menopause.  The cause doesn't really matter to me but the effects have been weird and occasionally disturbing.  Basically I fluctuate between three states at random intervals: no period at all, spotting and deluge.  I've gone as long as six month with no period and also had one very heavy period for six weeks where I had to be put on prescription progesterone since I was becoming anemic from all the blood loss.  Yuck!

Well, science has caught up with reality


Thursday, February 19, 2015

Leptin and Brain Inflammation

Feel free to start at 5:50 to skip the introductory stuff and them futzing around with the software.

Wednesday, February 18, 2015

Medication and Supplement Review

For the last year I've been working on MTHFR thinking that GABA/Glutamate was the key to making my brain work again.  I got the idea after finding out that being floxed causes glutamate to become dominant which result in brain fog and cognition issues.  Ever since then I've been on a quest to make my brain work well like it did after being floxed but without the severely debilitating joint pain and anxiety attacks.  So far, I've had minimal success.  I had some improvement when I first started Yasko's shortcut protocol but leveled out after a few months.  Of course this winter I've backslid horribly and the MTHFR supplements aren't helping keep the CFS/ME/SEID in check.  However, I might have been misguided...

I was just searching my old posts for information on Cipro and ran across some information that I had forgotten about.  This is one way my brain isn't working at all.  I get hyperfocused on one thing and forget all the other stuff going on at the same time.  What am I referring to?  It turns out I was experimenting with several treatments at the same time as being floxed.  I'm guessing that they all interacted in some weird synergistic way, particularly since one of the treatments involved Chinese herbs in the form of Equalibriant, which NONE of my doctors understood.  By all counts, floxing should have made my brain function worse but weirdly it got vastly better.  Upon review I was not only taking Equalibriant but also started my first B12 shots i.e. kickstarting my faulty methylation cycle.  So I had three things going on at once: methylation cycle working again, whatever the heck Equalibriat does and getting my neurotransmitter biochemistry seriously rearranged.  All at the same time.  No wonder I had the wonky reaction.  

I had been wondering why I dropped Equalibriant and going back over my posts it looks like I had mistaken the floxing symptoms for side effects of the Equalibriant.  Thinking it was the supplement I halted it.  Of course that didn't stop the symptoms since they were actually from the Cipro/Levo.  I'm guessing all the problems I had with the B12 shots were also due to floxing.  I remember having really bad reactions to the shots when I had originally tolerated them well.  We kept reducing the dosage until I finally just switched to sublinguals since I could no longer tolerate the pain from the shots.  

The entire reason I started looking into this is that I'm starting to have trouble with Yasko's supplements.  The GABA induces heavy somnolence for about 24 hours.  Both SamE and 5HTP cause serious problems with the dopamine/serotonin balance resulting in either serotonin syndrome or an attack of restless leg syndrome which interrupt my sleep and which I don't normally suffer from.  I've had to back off Yasko's full protocol and even reduce the dosing of the shortcut protocol.  

So I need a new plan.  I would love to get rid of some of the pills I take.  I can't keep up with them all.  I have so many that I often don't take about 2/3rds of them.  I need a better plan that I can keep up with.  So:
  1. Review supplements needed for CFS/ME/SEID (I have some new info regarding microglia that I need to look into further)
  2. Review supplements for MTHFR and stick to the minimum
  3. Consider adding Equalibriant back into the rotation

Friday, February 13, 2015

Enduring vs Thriving

There is a vast and sometimes what feels like an insurmountable difference between the two.  According to Google:

  1. 1.
    suffer (something painful or difficult) patiently.
    "it seemed impossible that anyone could endure such pain"
  2. 2.
    remain in existence; last.
    "these cities have endured through time"
    1.  (of a child, animal, or plant) grow or develop well or vigorously.          "the new baby thrived"    2.  prosper; flourish.         "education groups thrive on organization"

As a chronic chick, I definitely endure daily the slings and arrows of my illness.  So far I still "remain in existence" and often "suffer patiently".  However, on my better days I also thrive.  I flourish and prosper and grow and develop.  I guess it is a matter of perspective and a new definition of success.  

I am so glad I studied Buddhism under a nun for several years prior to becoming ill.  I think it has been my bridge between just enduring and actually thriving as a chronic chick.   In Buddhism it is believed that the basis for all suffering is grasping/wanting.  As a Buddhist, I try not to grasp at things.  It can be something as simple as wanting a new bathing suit that I can't afford and won't use anyway to desperately wanting to get better.  I constantly remind myself that all things change and all things are impermanent.  All of my things will be gone in years, decades or centuries hence.  All turned to dust.  And I am just as impermanent as my things.  My body will leave this earth at some point and will become dust.  While my body feeds the worms my spirit will be reincarnated into another body and my lessons will continue.  

I think this is why I can thrive as a chronic chick.  I'm not dependant upon my body working for me to prosper and flourish.  Instead of trying to accumulate wealth/status/influence, I'm happy to feel wind in my hair and sun on my face.  Hey I managed to toddle out onto my deck today to enjoy the sunshine!  To bask in the glory of nature!  Hey I managed to answer someone's question on Facebook who is also struggling with chronic illness.  Now they are happy since they know they aren't alone and they have someone else they can add to their support team.  My definitions of success are making someone else happy, lightening someone else's burden, managing to get out into nature, enjoying sun and wind and rain and snow, noticing and taking pleasure in the minutia of life, learning the names of bugs and plants and trees, managing to read a science paper, learning something new.

Without my Buddhist perspective, I would more than likely be stuck enduring this illness but instead I find that I'm often thriving despite it.  I see it all the time on blogs "I am not my illness".  I think this is what is meant by that.  Once you stop grasping at the life that you once had or grasping for a fully functioning body, you can thrive instead of endure chronic illness. I consider my body a blessing, even if it is broken.  We are lucky to be born into this world and wander this earth for a short time before reuniting with the stardust once again.

White Tara
Female Buddha of Healing