Technical Difficulties

I am having problems with Blogger.  This has been since my computer was hacked and my Google account was compromised.  I can no longer post comments to ANY blogs including my own.  Blogger's reporting system stinks and in my CFS haze I haven't been able to navigate it.  Anyway, don't be offended if I haven't commented anywhere or haven't answered your comment here.  My poor CFS addled brain hasn't let me figure this out yet.  Please be patient.

Tech Vid About Gut Lining

This is a somewhat technical video about how the gut lining works.  While they mention IBS specifically, the way the gut works and doesn't work is the same when the gut becomes damaged.  This could be some of the problem in CFS.  The good news is that it can be cured via diet.

http://bcove.me/4wul3t4o

Anti Virals Update

I haven't been writing much.  I just haven't been in the mood for some odd reason or other.  Things have been in such flux around here.  My health is going up and down.  I've been on antibiotics/probiotics twice now with very good results.  There was the bombing which I'm almost over.  Bombings in TV plots still bother me even when I know it is fake and I can see it coming.  Ah well.  And honestly I've been using my good days to actually do things like pulling weeds and getting rid of cobwebs which sounds mundane but is really exciting for me.  By the time I sit down at night I'm pooped.  Lots to write about but I want to keep this to a reasonable length so I'll stick to a the narrow subject of antivirals.  Without further adieu...

I bought the chlorella and spirulina.  They are both in loose powder form so I can more easily control dosing.  I've used them twice, adding them to fresh carrot juice.  Frankly I hate the stuff.  It tastes NASTY!!  Ruined two perfectly good glasses of juice.  UGH!  As a result I haven't taken the stuff on a regular basis so I have no idea if it works or has any effect other than making me gag.  Sigh.  It was kind of expensive.... I hate wasting money but I'm not sure how I can hide the taste of this stuff.  I love carrot juice and hate desecrating it this way.

I went back to the Equalibrant.   I started on one pill a day and stayed there for a month.  When I no longer had joint pain I added a second pill.  I do notice a difference in energy level, recovery time and crash severity when I'm taking it.  I do much better on the stuff.

Right now, although I'm still doing quite well, I seem to be on the slow decline again and may need to do yet another round of antibiotics.  I went and saw my treating CFS doc about it and he is having my poo tested to find out the bacterial profile of my gut.  After the results come back, he is going to try and tailor my treatment plan to the findings.  The urine test I did a couple of months ago had some odd results: elevated marker for candida and elevated marker for artificial sweetener/aspirin use (neither of which I had taken/eaten prior to the test).  He wants to try to figure this out.  He also doesn't want me taking the particular antibiotic my primary has me on.  Apparently one of his patients can no longer walk after a severe reaction to it.  That particular class of drugs causes swelling of the tendons in some people.  Remember all that joint pain I was experiencing at Christmas?  I thought it was the Equalibrant but it might have been the antibiotics instead.  Dang!  Thank goodness there is a different safer one I can take but he wants the poo test results first.  Hopefully I can figure out the payment directions this weekend so I can pop it in the mail Monday.

It is such a comforting thought that my poo and urine travel in the same delivery trucks as my meat and food orders.  YUCKY!!

Happy Anniversary To Me!

It is that time of year again.  It is the anniversary of my contracting CFS.  I was in the middle of my first competitive season of figure skating.  Yup, me, a 40+ fat chick was competing against other adults on the ice and getting medals doing it.  Then the virus struck.  My kid brought it home from school.  He got better.  I didn't.  And here I am three years later on my forth anniversary.

The good news is is that I'm doing better than I was last year.  I'm more active.  I'm managing to read a bit more.  I have about equal good and bad days now rather than them all being bad.  I'm walking short distances unassisted, 25-50' typically.  With the occasional 100' jaunt about once a month when I get really restless.  I can walk the perimeter of my yard most days.  This would have sent me to bed in a three day crash a year and a half ago.  So I'm seeing progress.

The thing that made me really happy this spring is that I got to go into Boston proper for my birthday dinner.  I got to eat at my favorite french restaurant for the first time since getting sick.  Both of my prior birthdays I had to eat locally since I was too sick to travel.  I had a marvelous time and a delicious dinner!  It was so wonderful to be out and about even if it was in a wheelchair.  For those who are curious I had a beet, hazelnut and goat cheese salad followed by duck a la orange and chocolate mousse for dessert.  YUM!

Progress.  Baby steps.  Patience.  And hope!

Methylation Cycle

I'm still trying to wrap my head around this.  My poor brain isn't working well enough to get beyond "this is broken in CFS patients".

Anyway, here is a short and sweet explanation of it

Here is the lab where some CFSers are getting their DNA tested:
https://www.23andme.com/

Mind you the people I know that have had this done are doing it on their own and not under a doctor's supervision.  Two people that I know of are tinkering with their supplements based on the results of their genetic testing.  My brain is too useless to figure this out for myself so I haven't even bothered to have the genetic testing done.  If I had a doc that could help me out with this whole thing I would be happy to have it done.

Here is the quite famous Methylation Protocol which I did try for a little while.  I might give it another go now that I'm doing better and see if there is any further improvement.  Anyway this isn't a protocol to be toyed with lightly.  As Patrick over at Quixotic ME says:

http://quixoticmeblog.blogspot.com/2012/05/lord-of-rings-memes.html

Here is Rich's famous protocol (you'll have to scroll down: the last time I checked it was the 7th post on the page)
http://forums.phoenixrising.me/index.php?threads/simplified-methylation-protocol-revised-as-of-today.9447/

Here is my disastrous flirtation with Rich's protocol:  http://infinatedays.blogspot.com/2012/06/gaston-and-methylation-protocol.html

My take on this is that if you are as sick as I am this isn't something to do on your own.  Have someone with a working brain help preferably a health care practitioner of some kind.  You can have a nasty potassium reaction if you miss doses of the meds or try to ween off them to fast.

EDIT:  Since Blogger won't let me comment, even on my own posts, I will answer your questions here.
Rich was an engineer whose wife has CFS/ME.  He developed the protocol and it works well for some.  I believe that it did help me but because of my bad memory I was unable to keep up the dosing schedule with any regularity.  I often missed doses entirely.  For further reading on the protocol I suggest reading the message boards on Phoenix Rising website.  Unfortunately we lost Rich not so long ago so he is no longer available to answer questions.  He was a well respected member of the CFS/ME community.

I Have a Sad

Physically I'm doing pretty good.  I've been doing more cooking and picking up around the house.  I even pulled some weeds yesterday.  That is a first in three years...

However, I've had a big sad all week.  I live near Boston and the bombing at the marathon has affected me greatly.  Every time I hear anything about it I want to cry.  I don't know anyone directly that was injured or killed.  However, last year my son worked at a store that was right next to the bombing site and the windows were blown out of the building.  My son took pictures at the finish line exactly where one of the bombs was placed.  He almost went into the city to take pictures again this year but he decided to stay home this year instead.  Whew!  OMG, I don't know what I would do if he got hurt.  I love him so much.  That was too close.

Two days prior to the race I was in Boston with him.  He pushed me around Harvard Square in my wheelchair.  We had a wonderful afternoon together.  We saw lots of people with marathon jackets on. People that were here for the race on Monday.  I have no idea if they got hurt.  My son has been wearing his marathon jacket since Monday.  He got it when he worked security a few years ago.

Today I'm up watching live coverage of Watertown where they have already killed one of the suspects and are currently searching for the second guy.  I'm not sure if I'm going to be able to sleep at all.  Much much too much violence.  The two guys killed an MIT officer.  I used to work there.  I used to live the next town over from Watertown and I used to shop and get medical services in Watertown.  I know these streets where all the shooting has occurred.  I hate this.  I don't understand why people would do this.

I'm tired.  I'm upset.  I'm scared.  I'm about half an hour away from the action but still much too close for comfort.  This shouldn't be happening here.  Yes, people die from gunshots in Boston but they are in the bad neighborhoods.  It isn't two guys driving around Cambridge and Watertown and who knows where else.

Sick Humor

Yeah, me neither.