Sunday, November 16, 2014

A Trial of LDN

Many CFS/ME patient use low dose naltrexone (LDN) with some modicum of success.  You start at a 0.5mg dose and slowly work your way up to 4.5mg in 0.5mg steps.  I've been excited to try this med since I first heard of it a year or so ago.  I even got a scrip from my now retired CFS doc but it was for 1.5mg which caused me sleep problems.  When I went to see my new CFS doc (whom I'm not going back to but that is another story for another day), I talked her into giving me a scrip for 0.5mg dose.

Last week I tried my first pill.  I took it just before bed.  I then slept for 8 or so hours and woke up with "one of those" headaches that I knew would escalate as the day went on.  Sure enough it developed into a migraine.

Now, I'm not new to migraines, having suffered from them on and off for 30 years or so.  However, I have an odd type called ice pick migraine due to the fact that the pain is a sharp stabbing pain in the side of my head.  I usually have them just over my right ear but occasionally have a milder version over my left ear.  These are excruciatingly painful but I very rarely get nauseous from them and never have aura.  When I first came down with CFS/ME my migraines became a regular monthly visitor and I had to start Celebrex to control them and my daily headache.  Apparently the CFS migraines were linked to brain inflammation.   Anywho.....

The LDN migraine was totally different.  It was along my occipital ridge at the base of my skull.  As it intensified the pain spread around to the front of my face and involved my jaw and teeth.  Instead of it being a stabbing pain this was constant.  As the day wore on it escalated to the point of photosensitivity, sound sensitivity and full blown nausea.  I skipped all my first line defenses of magnesium +B6 doses with a side of espresso, and the Excedrine migraine meds and went straight for the Tramadol and ice packs.  This controlled things enough that I could lie down and binge watch Elementary which has more dialog than flashy action sequences.

For the migraine day and the following migraine hangover day I stopped all meds and supplements while my system calmed down and returned to "normal".  I got on the LDN facebook group and started asking questions.  The basic answer I got was "oh yeah, that is normal.  Just tough it out and keep taking the LDN.  The headaches will go away in a couple of days."  They must have missed the migraine part of my post.  This was hands down the WORST migraine I've had in decades.  There is no "riding this out" or "tolerating it" until my system acclimates to the new med.  It is simply just too painful.

So now I'm scared to take it again.  They told me to titrate it down to a smaller dose.  Other than cracking a capsule open and using a wet toothpick to pick up the dust, I'm at a loss as to how to reduce my dosage further.  I would love for this to work for me.  I really really want it to work for me.  At what point are the side effects bad enough for me to give up on something entirely?  So the bottle is on the kitchen counter, mocking me daily.  Daring me to try one more time.  Was the migraine a fluke or was it really induced by the LDN?  Can I reduce the headache intensity by reducing the dosage even more?  Why didn't I get a headache with the higher dose?  I need to pick a week that I can lose to pain and recovery before I can try it again.  Right now I'm just plain too scared.  It f'n hurt!

Saturday, November 15, 2014

Sick Humor

You know you are chronically ill when your house hunting centers around the drive to your doctor's office.

Friday, November 14, 2014

In The News

Lots of interesting news of late: there is the Standford study showing inflammation and low blood flow in the brains of CFS/ME patients that hit the main stream press a few weeks ago and then there are these interesting tidbits:

1)  MIT has started a new department to study the human microbiome.  I've been wondering for quite a while now if the microbiome in CFS/ME patients has been altered by the illness.  I've heard anecdotal stories of patients being cured via fermented foods, traditional foods and/or juicing.  All of which will alter the microbiome significantly.  And of course, there is the work of Dr. Chia who believes that CFS/ME is a virus of the gut.  I would love to see some CFS/ME researchers take up MIT on its offer of money and resources for further study, maybe even Dr Chia himself.

2) In a completely different department, MIT has figured out how to store data in E. coli.  Makes sense since it can be used as a four bit storage device which increases storage capacity immensely over traditional two bit computers.  The funky thing is that they could be used in the microbiome research listed above.

3) Since diving down the MTHFR (genes responsible for methylation) rabbit hole, I've developed an interest in SNPs (single nucleotide polymorphisms otherwise known as genetic abnormalities) for conditions other than MTHFR.  Low and behold a study was recently published on SNPs associated with CFS/ME.  I'm very annoyed that it is behind a paywall since I would love to read this report in its entirety.  However, here is the abstract and conclusions:

4)  And here is more detailed study of methylation problems in the CD4+ immune cells of CFS/ME patients.  I haven't read and absorbed all the info here as it is a very long report.  However, I believe it would tie in nicely to the study on SNPs listed above.

5) It would also be interesting to look at the genetic data from CFS/ME patients to check to see if they have anything in common with the HLA genes for chronic inflammation that is found in Lyme and mold illness.

6) And in the exciting field of epigenetics is this study on immune system changes that are intentionally induced by human direction.  This could potentially lead to treatments that could downregulate or upregulate the human immune system which would a boondoggle for CFS/ME patients.

Tuesday, November 11, 2014

Anniversary Redux

So several weeks ago, hubs and I discussed the horrible anniversary and we both agreed to a do over.  We were going to pick another day and make pretend it was our anniversary and try again.

Believe it or not this one turned out WAY worse than the first one.

Me (a little over a week ago):  Well the kid is going away this weekend so Saturday would be a great day for our Anniversary Redux.  Let do dinner, possibly a movie but generally make a point of spending the day doing stuff together.

Hubs: (on Thursday night after I had an IV and was severely brain fogged): Hey, can I go out to the movies with my guy friend on Saturday night?

Me: Sure.  (I very rarely say no to these requests since it isn't fair to lock him up in the house just because I'm sick.)

Friday, Me: Hey!?!?!  We were supposed to go out for our anniversary on Saturday.

Hubs: Yeah, but I asked you about the movie with J. and you said okay.  I just figured we could go out on Sunday instead.

Me: But kid will be back then.

Hubs: He is old enough.  He can feed himself.  (We usually always have family dinners.)

Saturday comes and I'm fuming mad.  Hubs tells me that the sewer is backed up and that we have to get a repair guy in there to clear the line that goes from the house to the street.  This is 3pm.

I get on the town local's Facebook page and ask who should I call.  Turns out the town will come and fix it for free.  I tell hubs and he calls and gets an answering service.  4pm we get a call back.  Will be there in half an hour.  Sure enough he shows up about 4:30pm.  Hubs is out buying me a sub for dinner.  I show the guy the pit in the backyard that accesses the line to the street.  The pit is almost 3' deep but is full to the brim with brown water and smells disgusting.  He drags his gear over and asks me for an outlet for his gear.  I get the outdoor outlets working and plug his equipment in.  He starts work.

Hubs gets back hands me my sub; goes in the backyard and hands the guy the last of his cash (the service itself was free); comes back in and raids my wallet for his night out with his friend.  Oh and he is going to see the new science fiction movie in 3D that I would just love.  He leaves.

I eat my sub.  I keep checking on the worker.  Keep asking him if he needs anything.  He needs an extension cord so I run and go find that.  When he plugs in his gear, it pops the breaker.  I have to run into the garage, find the breaker and try to reset it.  (At this point I knew I was cooked.  I have severe CFS and here I am pretending that I'm a normal person.)  I run back out to the deck and still no power so I take the extension cord and run it from the kitchen out to the deck so that he has power and the cats can't get outside.  I go back to watching TV and the cat falls asleep on top of me.

About an hour later he knocks on the door and says he can't clear it so I go out into the yard with him for a chat.  I call hubs and ask him if the pit was full when he dug the shit out of it earlier.  "No."  So I tell the guy and we both decide that maybe the mainline in the road needs clearing out.  He leaves to get another guy to help him out.

By 6pm on the day of my anniversary redux, I'm staring at two town sewer trucks in the middle of my street flushing the main sewer line.  My entire house smells of sewage even though nothing actually backed up into the house itself.  I'm talking to the cat because I'm in the house all by myself.  Back to watching reruns of Elementary.

7pm and I'm on the deck watching the two guys trying to clear out the line from the house to the street.  They need a garden hose and running water.  Off I go to the shed.  Drag out the lawnmower so that I can get into the shed.  Drag out the hoses.  Untangle one and hope that it doesn't leak.  Drag it over to the faucet.  Get it hooked up and turned on.  Drag it over to the far side of the deck.  Untangle it three or four times so that water will actually go through it.  Place it away from the power strip so that the guys don't get electrocuted.  I collapse on one of the deck chairs.  One of the guys asks where hubs got to.  I told him he went off to the movies.  Stunned the guy asked me "You mean he left you here all by yourself to deal with this?" and he didn't even know how sick I am.  Then the whole thing struck me: this was supposed to be my anniversary redo and I'm here breathing in sewer stink helping the workers while able bodied hubs is off watching a new scifi movie with his friend.  What the F is wrong with this picture!?!?

In the irony of all ironies, I'm again eating a meatball sub on my "anniversary" and smelling sewage, just like a month ago.  Only this time I'm alone.  At least I'm not in a sports bar this time and the town sewer workers turned out to be really nice guys.  Hubs on the other hand....  What in f'n hell!?!

I'm done.  I give up.  I'm not planning anything.  I don't want to go out.  I don't give a crap.  If he wanted to take our anniversary redo seriously then he would have never gone out with his friend.  He managed to place the whole thing on my shoulders claiming that I gave him permission to blow it off.  Then me, the sicko, got to stay home with the sewer backup exerting way more energy than I have spoons for while he goes out.  I'm vacillating between being really angry and not giving a shit anymore.

Strangely we are getting along really well.  Probably because I didn't pop a cork and he got to do what he wanted.  In the meantime, I feel vaguely used and slightly depressed.  Oh and I found a gorgeous loft in Chelsea.

Saturday, October 18, 2014

Apartment Shopping

Lately whenever I get really pissed at hubs I start online apartment shopping.  Lately it has become almost an obsession.  I can very clearly picture myself walking into an empty modern loft apartment with nothing.  Absolutely nothing.  No clothes.  No furniture.  No books!  Nothing.  I am there to start my life over.  A new beginning.  A new life from scratch.  

Thing is I just realized that what I'm really after is walking away from my current life.  I want to run away.  I'm so tired of it.  The illness.  The lack of friends.  The lack of family support.  I'm tired of trying to figure things out.  While I'm very very busy trying to learn biology and a way to fiddle with my supplements so that I get even slightly better, my marriage is dissolving into a puddle.  I'm so busy trying to fix me that my marriage is failing.  I don't know how to fix that either.  I can't fix me and I can't fix my marriage so I just want to run away and start over.  From scratch.  Maybe I'll do better next time.

Of course when I realized all this I knew it was impossible.  You can't run away.  Problems have a nasty habit of following you.  I won't get better by moving.  I might get slightly better if mold is involved in my illness but that is a risk.  And I could move with my husband instead of striking out on my own which is this fantasy.  He is never a part of it.  I'm on my own.  

The horrid reality is that I am not well enough to live on my own.  I'm too sick.  I can't walk away.  I can't even pack.  Heck I can't even plan.  On my best days I manage to make both breakfast AND dinner instead of collapsing in a heap by 4pm.  I can't clean.  I can't do laundry.  I can't do dishes.  I can barely cook.  I can't run away.  Hell I can't even walk away.  I need to be pushed in a wheelchair.  
Not sure where this leaves me.  I like my fantasy that I've woven together.  I love the idea of starting over.  Reality bites.  I'm in limbo for now.  

Wednesday, October 15, 2014

It's Not Okay

I came from a verbally and physically abusive household.  My father was a mean drunk.  I am both uncomfortable and used to meanness in my relationships.  I find that more often than not I just need to hear from my therapist that "It's not okay to be treated or spoken to like that."  It scares me that often I don't recognize certain behaviors as mean; that I consider them normal; that I need someone to reality check my relationships for me because I'm blind to mistreatment.  Instead I feel vaguely uncomfortable and can't quite put my finger on why and I keep trying to figure out what I did wrong.  Once the therapist tells me that it isn't me, that the other person was behaving badly, then I am swept with relief.  It isn't me.  That wasn't okay.  That person was behaving badly not me.  Once I get turned in the right direction I can figure out how to handle things.  However, more often than not I need that prompt, "It's not okay."

Where I'm going with this is my crappy vacation.  I only get to go on one vacation a year.  I don't travel from my house for overnight stays elsewhere except on 4th of July, when we visit his longtime friend, and a short vacation.  This year didn't go well at all.  Things that went wrong, let me count the ways:

  • Hubs treated the whole thing as my consolation prize for letting him drive out to Chicago to see his brother.  That is not okay.  My vacation shouldn't be a consolation prize but a time to enjoy each other's company going someplace together.
  • Hubs mentions the vast sums of money it cost him more than once.  This is not okay.  If we are that strapped for money then I'm fine with staying home or figuring out something that is within our budget.  But do NOT complain after the fact about how much it cost you.  It cheapens the entire thing and make me feel like a bloodsucking leech and somewhat worthless.  I take the message as 'you are not worth spending my money on'.  
  • Hubs kept his nose in either his phone or ipad the entire time we were together.  This is not okay.  At least attempt a conversation.  This was supposed to be a time to connect and talk and get to know each other again.  Instead I feel like I'm interrupting at best and uninteresting or a big bother at worst.  Again I take this as 'you are not worth my time'.
  • Hubs complained the entire time we were walking (he was walking and pushing me in a wheelchair) about how difficult it was to push me and how stinky the poop plant was we happened to go by.  This is not okay.  Don't pick an activity and then complain how difficult the activity is and how much I should be thanking you for doing something nice for me.  Honestly, if you are going to complain the entire time about how it is a such a chore then I would prefer to stay home.  It makes me feel horrible.  I get the message 'you are not worth the effort'.  I shouldn't have to grovel when you show me the slightest kindness.  It makes the entire relationship into some kind of dominant subordinate dynamic which isn't healthy at all.  I also feel like I have to beg to be let out of the house and no matter how crappy the event is I have to kiss your shoes to show how much I appreciate the attention and Herculean effort you put into the event.  That is really fucked up.
  • Hubs didn't help with ANY of the planning but complained when he couldn't find someplace to eat that he liked.  That is not okay in oh so many ways.  I'm too sick to plan stuff.  I'm too sick to coordinate stuff particularly after a long car trip.  I'm too sick to realize that we could take a taxi to go eat at a place where there isn't any parking or wheelchair access.  I can't look up places to go or places to eat when I have no maps and you are watching movies on the ipad i.e. no computer access.  I need your help with planning and execution.  It shouldn't be all on me.  It should never be all on me.  This was even a problem when I was well.  I was the one that was supposed to plan the trips.  It is a long standing pissing match that I can't participate in anymore.  
  • Hubs makes me feel guilty for making him help with anything.  This is not okay.  Planning should be a shared activity.  Picking out the destination.  Picking out activities.  Picking out restaurants.  Guilting me into planning the entire trip and then coming up with some excuse as to why it needs to be completely scrapped isn't cool.  You did this to me even when I was well.  Not cool.  Very not cool.  The whole "let's wing it" thing doesn't work either particularly now that I'm so sick.  This needs to be a shared activity.  Lets hope that planning our anniversary dinner redux goes better.
  • Hubs getting a non handicapped room because hey its cheaper.  Also SO not okay!  I need the room to get the wheelchair into the room and the grab bars in the bathroom.  The seat in the shower is a bonus as well.
  • Hubs moved us out of first hotel to a second cheaper hotel.  It's not okay.  Moving me constantly is such a bad idea.  This one is partly my fault since I agreed.  I shouldn't have.  The first hotel was nice.  It was in a good location.  The bed was comfortable.  It was a handicapped room.  Being cheap is not a good reason to make me uncomfortable on my one and only vacation.  For a $100 savings I had a terrible nights sleep, several days of severe pain, a week of CFS crash, a miserable last day of vacation for me, a horrible dinner that probably added to my pain and misery the next day.  So not worth the $100.  Then he had the nerve to complain that I didn't feel good.  Well no shit Sherlock!  
His behavior is probably just his temper tantrum at my illness coming out but that doesn't mean that it is appropriate.  He shouldn't be taking his anger at my illness out on me.  This vacation went wrong in so very many ways.  It wasn't until my shrink told me that this wasn't okay that I realized that it wasn't all me.  That his behavior wasn't acceptable.  That things need to change.  It needs to be different next time.  Now I just need to learn how to manage it for next time.  To make it better.  To make it more equitable.  To make it okay.  Let the planning begin.

Friday, October 10, 2014


There are tons of probiotics on the market and I really haven't looked into them.  I try to get most of them through eating sauerkraut and fermented beets and drinking kombucha.  The bug count is orders of magnitude higher in food than pills so are a much better source.  I keep buying kefir but don't drink it regularly.  I do use it to make creamy salad dressings and smoothies.

Anyway, I do have four probiotics that I try (not very diligently) to rotate through:

  1. Saccharomycis boulardii: this was prescribed to me by my food knowledgeable CFS/ME doctor and is available in the fridge section of your health food store
  2. Biffida: my treating CFS doc put me on this after my stool test showed I was deficient
  3. Fermented fish oil: recommended by real foodies everywhere
  4. Lactobacillus plantarum:  which I discovered in this article and thought might be helpful in my case
As part of my new action plan, probiotics are going to be a big part of healing my gut further.  I've come a long way in this department but am still having the occasional heartburn and am now having trouble with cruciferous vegetables.  Even my beloved sauerkraut is giving me heartburn.  Sigh....  Time for a revisit.