Spock

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."

Thyroid

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.

http://www.hashimotoshealing.com/hashimotos-mthfr-gene/

http://drknews.com/breakthrough-research-hashimotos-diet-coming-soon/

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

http://www.eurekalert.org/pub_releases/2015-02/tnam-sfl020315.php

and

http://www.ncbi.nlm.nih.gov/pubmed/25647777

Leptin and Brain Inflammation

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

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

Enduring vs Thriving

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

en·dure

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"

thrive

    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

The Eyes Have It

One of the ways my husband can tell I'm crashing, often before I know myself, is by looking at my eyes.  I start losing my ability to track properly.  My eyes start darting around more than usual.  Of course, I also have the other eye symptoms related to ME/CFS/SEID such as dry eyes, blurred vision and the light sensitivity.  They all get worse as my functioning declines.  Due to my annual midwinter crash, I've had blurred vision for about two weeks now with some days it getting so bad that I can't read even magnified text.

Anywho....
Here are two different types of studies that recently made the news; one that is looking at eye problems in ME/CFS/SEID patients in particular and the other on a new type of eye tracking test that I would LOVE to see used on us.

Eye health could help diagnose people with chronic fatigue syndrome

Novel eye-tracking technology detects concussions, head injury severity

Potato Pohtahto

The IOM released its findings on ME/CFS today.  They suggested a name change, Systemic Exertion Intolerance Disease or SEID for short.  My first reaction was scorn "Oh great another cruddy name for this illness" but it is growing on me.  I read the slides that were used in the meeting this morning and they are pretty interesting.  NBC totally botched their report on it but that is another rant for another day.

While I strongly believe that their is brain inflammation involved in SEID, there isn't enough solid evidence to use the ME name.  I guess not enough of us suffer from pain either.  I know in my case while the pain was intense it only lasted about a year during my worst time.  I was doing pretty well until I got floxed. 

There is a simplified diagnostic criteria for my illness which is based on actual scientific evidence so it can't be argued with like the other definitions.  I'm kind of bummed that the CCC and the IC for ME are both gone but they were based on clinical experience rather than solid science studies.  

I'm hoping that this will now start to move things in the right direction: more money for research, better controls on study cohorts, more widespread acceptance, more doctor training.  They are going to be releasing a physician's guide for diagnosing and treating patients so that will be fun reading.  I'm actually looking forward to it now.  I'm very curious what they will list for treatments.  I can't wait to take it to my doc. 

As long as people don't interpret "exertion intolerance" to mean lazy, I might be okay with the new name.  At least the name got switched from syndrome to disease.  I guess I'm now officially sick.

Here are the slides from the IOM meeting:

Beyond ME/CFS

Ataxia

As I have already mentioned, Dr Komaroff my consulting CFS/ME doctor retired last year and my treating CFS/ME left the state.  In my search for a new doctor I was on the Mass CFIDS site and ran into a great page on the new SSD requirements for proof of disability with a CFS/ME diagnosis.  Under the list of things to monitor was 'ataxia'.  I had never heard of this so after consulting Dr. Google I ended up on the National Ataxia Foundation website and EUREKA!!  There was a list of my neuro symptoms!  All of them! With a few extras I had no idea were related!

• Balance and coordination are affected first
• Incoordination of hands, arms, and legs
• Slurring of speech
• Wide-based gait
• Difficulty with writing and eating
• Slow eye movements

The is also overactive bladder, crying jags, heart issues and low blood pressure.  All of which happen to me.

Woohoo!  I have a name!  Even more exciting I discovered that the top Ataxia Unit is near me at Mass General Hospital!  The head of the department is THE Ataxia guy in the US.  They have treatments for the neuro crap I've been dealing with for four years now and they specialize in the treatment of diseases of the brain.  I am SO excited!  I just printed out the referral forms and health history forms.  I also printed out the Stanford study that shows brain inflammation is part of CFS/ME Now I just hope that it won't be a six month wait to get in there.

In Mourning

I'm coming up on my fifth anniversary and starting to dread the fact that I might not get any better.  Progress has been so slow and everything sets me back.  It doesn't help that February is always my worst month of the year and we've been having horrendous storms that have robbed me of what little energy I have.

What has also upset me is two deaths in the patient community.  One from heart complications due to the illness.  I don't know the specifics of the second one.  I've been reading posts all day in memoriam.  Other patients are crying.

For unrelated reasons (mostly being angry at my siblings) I'm in the middle of rewriting my will and adjusting my benefactors for insurance and various accounts.  However, this got me thinking that what I once thought would be a very long life might get cut short by this illness.  With the deaths today this has hit home particularly hard.

There is a Buddhist practice where you have to sit and meditate on death.  This is supposed to aid in the realization of impermanence, that life is fleeting and all things change constantly.

Right now I'm just very sad.  There is a good possibility that this illness might just kill me.  It is not what I wanted nor what I expected out of this life.  Not only do I mourn the loss of my fellow patients but also, truthfully, the loss of my own vibrant existence.  I'm now a slave to a body that doesn't work very well.  I'm at the mercy of its fickle ways.  Today I have no hope.