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.

Twisted Logic

I've been having a really difficult time with my sister for the last two years.  It finally culminated, at my therapist's urging, in cutting off all contact with her for my own piece of mind and general health.  Of course she is still giving my mother heartburn and information wends its way back around to me.
For some reason she doesn't think I want to get better.  I finally found out why, I'm not seeing the type of doctor that she approves of.  She doesn't like the fact that I'm being a "know it all" regarding my illness and doesn't agree with my treatment plan, not that she actually knows what it is. Sis wants me to travel six hours to see the "real" doctor in the Adirondacks because she "cured" herself of CFS and fibro with magnets and aura cleansing.  The world famous CFS doctor and the functional medicine doctor that are treating me that have been treating actual patients for decades obviously don't know what they are doing.  And because I choose to see them instead of her "real" doctor I obviously don't want to get better.

To take this at face value, I would never EVER hired her as a patient advocate.  She never researched my illness, never mind treatments (there are none).  She is taking this holistic doctor's word on her self diagnosis and treatment plan.  She doesn't understand that there are degrees of severity of the illness.  The doctor might well have had real CFS.  People that contract the mild form often go into remission after two years.  The doctor might have treated herself with her magnets etc for two years and POOF she is cured.  My sister really doesn't have a grip on the notion of correlation doesn't equal causation.  She doesn't know that both of my CFS treating docs told me that I was the worst case of CFS that either of them had treated, although via the internet I do personally know of patients that are worse than I am.

I looked into the "real" doctor to see what treatments she offered.  In the same paragraph she has EMF blocking plan along with a mega spectrum photon generator to re-energize your cells.  What the what!?!?!?  The photon generator is basically a lighted neon bulb that you rub on your body giving yourself a mild electric shock, i.e. it generates an EMF field and you are giving yourself an electric shock.  It even says to wear rubber gloves when using it to insulate yourself from shocks.  Talk about quackery.  And I'm supposed to hop in a car and drive six hours to see this shyster?

Never mind the hocky treatment, there is such a thing as respect for the patient, patient rights, etc.  Even if she had picked out the best CFS/ME doctors in the country she has no right to second guess me on my own treatment.  She definitely has no right to say that I don't want to get better just because I'm seeing doctors that she doesn't approve of.  She doesn't have a right to come up with her own treatment plan and then get angry when I refuse it.  This is all sorts of wrong.

However, to get at the core of this issue you have to realize that this is my sister's belief system.  She has swallowed the wishful thinking philosophy hook line and sinker.  That whole If You Just Have the Correct Thoughts Then Wonderful Things Will Manifest In Your Life thing is her core belief system.  Me and my illness flies in the face of that.  I'm not wishing hard enough.  I'm must not really want to get better because I'm still sick.  Chronic illness doesn't fit in neatly with this philosophy.  The patient must have done something wrong to manifest this illness.  They must have thought the wrong thoughts because health hasn't returned.  This is why I walked away from this philosophy years ago.  Something didn't quite sit right with me about it.  Sorry Wayne Dyer.  This leads to blaming the patient for becoming sick and staying sick because they obviously did something wrong.

Buddhism makes more sense to me.  Things change.  Things always change.  Life is impermanence.  We have been given this gift of a body and this life for a brief moment in time.  We are lucky when it works well and even lucky when it breaks.  Wait and things will change again.  Suffering comes from wanting.  Suffering comes from yearning.  Let go of wanting and suffering will end.

As you can see we have a huge chasm between our core belief systems and this underlies her comments.  If she accepts that I have a chronic illness then she has to change her belief system.  No one reacts well to a challenge to their core belief system.   It is the framework with which we understand the world and therefore sacred to a degree.  Some people can alter that framework after much thought and deliberation.  Others can not and will deny reality rather than change their beliefs.  I am coming to believe that Sis sits in the later camp.  Her beliefs are right: reality is wrong.

Because these comments are coming from her belief system they can't be argued with.  She has had a rough life and her belief system is holding her afloat right now.  All be it the wishful thinking isn't working for her either.  There will be no discussion or reasoning with her.  Sometimes all you can do is walk away.