Wednesday, December 17, 2014

Brother Dearest

Warning: this is another rant session.  One of these days I'm going to have to write about some nice stuff that happens to me.  Nice stuff does happen.  I just don't write about it.  I prefer writing about my turmoil.  It helps me think things through.

The relationship with my brother has been odd to say the least.  He was raised by my grandmother and great grandmother (a separate very long story) in England and I had very little contact with him during that time.  I moved to the US with my sister and parents when I was seven and we left him behind.  He moved over nine years later after they both passed away within a month of each other.  We were great friends back then.  He taught me how to solder.  We hung out together.  Played checkers a lot.   Went to the movies together.  As he got to know more people and made friends we hung out less but still got along fine.  After I moved out of my parents house we lived together on and off for a few years.  We got along fine.  Then I moved to another part of the state.  He met the love of his life and got married.  They went to Hawaii for three years on a work contract.  Things were never the same again.

Once he got back, I kept trying to hook up.  We lived near each other again but they were always too busy.  Didn't matter how many times I asked they were busy.  Over the years this degraded into a once a year three to four hour get together the day after Christmas with a few emails exchanges in between.  Once I bought a house this get together was ALWAYS at my house.  I cooked.  I cleaned.  I hosted.  They brought beer (we don't drink) and presents.  On the years that they went skiing instead, I mailed a box full of presents which often got sent late (I'm notorious for this).  We received and envelope full of gift certificates to places we don't shop at.  In fact I still have a few of them since the stores went out of business.  The emails got fewer in number and I always initiated the exchange.  Once I got sick those stopped all together.  I still hosted the Christmas get togethers even though I was sick.  I cooked.  My husband, son and housecleaner cleaned.  My family showed up with booze, more gift certificates and the occasional exchange student.

Last year my sister changed the holiday dynamic by inviting herself and my mom over to my brother's house for Christmas.  No one invited me so I invited myself.  This didn't go well since we could only agree on Christmas eve after dinner for our get together.  This turned into a three hour car trip in heavy traffic which messed me up to complete head bobbing stage.  Luckily I had my walker with me because I couldn't stand up on my own by the time we got to his house.  Of course I also couldn't talk, track conversations or take social cues at all.  My son told me stories later of all the uncomfortable stuff I missed: sis being drunk, SIL's banter about divorcing my brother, etc.  My mom was so uncomfortable that she wanted to leave and come to my house for Christmas which she did.  We had a wonderful time.

Then this past summer there was a huge family get together that no one even bothered to tell me about, let alone invite me to.  I found out because my mom had been so excited to meet up with her old friend that my sister had invited.  The whole thing was a  huge surprise party for the two of them.
This prompted my letter to sister dearest and our subsequent falling out.

Now Christmas is at my brothers again and again I didn't get invited.  My mom has refused to go.  She is coming here instead.  She also decided to call him to find out what the heck is going on.  I know  she filtered the conversation heavily and since it is pretty much open season on hubs the version I got puts the blame squarely on hub's shoulders.  Now I could understand this if he was actually mean to anyone.  Granted he can be very socially awkward sometimes but he has never gone out of his way to be nasty to any of these people.  As he put it, "I see these people three hours a year and even then I don't talk most of the time so where are they getting this stuff from?"  The only time he saw my brother on his own ever was at a job site a couple of years ago and they had a very pleasant lunch together and chatted for three hours about work stuff.  So what gives???  We've puzzled over this at length and are at a loss.  Even if they did hate hubs that much why not see me individually.  This is what hubs and his brother do.  He sees all of his siblings sans spouses.  I have never seen my brother without his entourage in tow.  It is weird.

So now what?  I'm pretty much done.  Can't get blood from a stone.  I've tried for many years to maintain a relationship with him but he just isn't interested.  I think if we weren't related by blood we would have stopped talking once he got married.  I often wonder if I'm not SIL approved and that is what is driving this entire thing. We got along fine prior to him getting married and we are almost identical personality wise.  I wonder if he is that much of a milquetoast?

Either way, I'm done.  I'm too sick to pursue this any further.  I don't want to contact him directly because my ego can't take another rejection after that last one from my sister.  I would like to at least maintain the illusion that the relationship can be saved at some point.  Hope springs eternal.  This will get interesting if SIL goes through with her threat of divorce....

I want to say that holidays bring out the worst in some people but really it is that you can very easily hide the family dirt under the rug the rest of the year.  However, when you pick the rug up for the obligatory annual holiday get together that pile of dirt is right there staring you in the face.  It hasn't gone away just because you ignored it all year.  Someone inevitably steps in the pile and the dirt flies everywhere spraying everyone in the room.  It would be best to deal with this prior to the holidays but some people hide very well.

Thursday, December 4, 2014

It is NOT about the knife!

Why do arguments with your spouse get so weird?  It is almost like you are talking in two different languages.  You're using the same words but they have completely different meanings.

For instance....

Hubs put my good knives in the dishwasher.  I paid over $100 for each of them since they are my tools that I use daily.  One of them had a really nice wooden handle and was a Christmas present from my son.  This isn't the first time I've asked him not to do this.  In fact, I've lost count on how many times I've asked him.  This time though was different.  I lost my cool.  I started slamming doors.

Of course he came to find out what was wrong.  He couldn't fathom why I was angry.  "What did I do?  At least tell me what I did wrong?"
"You put my knives in the dishwasher."
"I know."
"You can't even say sorry can you?"
"I'm sorry I made you mad."  Luckily it was dark so he didn't see me roll my eyes.

"It is a knife.  So what?  You shouldn't be this angry over a stupid knife."
"It isn't about the knife.  It is about the fact that I ask you something, repeatedly ask you something, and you ignore my words and do it anyway."
"I don't care.  It is just a knife."
"That.  Right there.  That.  'I don't care.'  That is the problem.  You don't care.  You don't care what I say.  You don't care about my stuff.   These are my tools; my very expensive tools that I use everyday and you don't care.  More importantly you choose to ignore me, ignore my words."
"I don't understand."
"Then I can't help you.  I can't explain this any more clearly than that."
"It is just a stupid knife."

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.  

Thursday, October 9, 2014

Tweaking Treatments

After my mom's visit, where I was running around a lot, and then my vacation, which didn't go as I had planned and I had an emotional meltdown, I didn't recover very well.  Lots of fatigue and brain fog.  I had a week off but spent a good deal of it in bed.  I kept hoping that things would improve but instead I kept getting slightly worse.

I was scared that it was mold.  It was the only thing that made sense to me.  I was still following Yasko's protocol closely but it no longer seemed to be working.  The under/over methylation argument didn't make sense because I had symptoms that were on both lists.  I was convinced that it was the mold so I was having very anxious moments where I was ready to walk out of my house into a sublet to get away from it.  I was even sublet shopping on Trulia.

Then I read one line in a 500+ page book that changed everything.
L-glutamine deficiency causes brain fog.  
I went to my kitchen took down the tub of glutamine that had been gathering dust on top of the microwave since I bought it months ago and cracked it open.  I took the dose listed on the tub, one teaspoon which is five milligrams.  I started to feel better within the hour.  Holy COW!!!  That was it.  I've been so fixated on GABA that I missed this.  I took someone's word on an internet forum that the glutamine would change into glutamate and that glutamate was EVIL, BAD, HORRIBLE and would do bad things to me.  Well glutamate is also a neurotransmitter that is needed for the brain to function properly and has to be in balance with GABA not eliminated entirely.  I'm also not sure the glutamine changes to glutamate anyway.  Either way it doesn't matter since the stuff WORKS!  I am now dosing at the lower rate of 1/8th of a teaspoon per day and am able to read again and my good mood is back.  No more meltdowns or 'my world is ending' moments.

Here is the info on this fantastic book I found that just got published.
Treating and Beating Fibromyalgia & Chronic Fatigue Syndrome by Dr. Rodger H. Murphree, published by Harrison Hampton, Birmingham AL.
Now that I can read again, I'm putting together a new supplement protocol based on his book.  I'll be starting with a liver detox due to my MCS which is fairly simple: ALA and milk thistle for one week, multivit the second week and then ramp up on 5HTP the third.  Then onto adrenal heal.  Then diet again which will probably be Paleo AIP.

I'll integrate it with Yasko's info and include some aspects of methylation protocol in with Murphree's info. Although he mentions methylation and even MTHFR in particular he just says to go see a doctor since you shouldn't be supplementing for MTHFR on your own.  HA!  Both my CFS/ME docs didn't know squat about this and they are both leaving their practices.  How the heck am I going to find a doc that is versed in both MTHFR and CFS/ME?  So I am on my own.  Luckily due to the glutamine my brain is working for a few hours a day again so I have to figure this out myself.  But I digress.....

I need to back track here a little.  I've been on Yasko's short cut protocol since April.  I've slowly added in more supplements to work on the CFS/ME part of the puzzle that isn't addressed by Yasko (she specializes in Autism not CFS/ME).  Slowly I've gone from six pills and three sprays to 20 pills and three sprays.  I've also started to have some weird side effects crop up such as lots of waking, tons of hot flashes, and restless legs waking me up and not letting me get back to sleep.  Just how does someone with severe CFS/ME deal with restless legs???  It isn't like I can jump up and walk it off.  Geesh.  So I had plateaued and the restless legs was annoying me and my cats who like to sleep on me.

I kept trying to read Yasko's material to sort things out.  I love her to bits and thank her profusely for making her books available for free and designing compounded supplements specifically for MTHFR.  However, my one big criticism of her work is that her writing is scattered.  She knows her stuff really really well, more than anyone else I've looked into.  She does use nice analogies but she has not done a good job of accreting all of that information down into a single well written source.  You are constantly being referred to chapters of other books she has written or papers available on Scribd or YouTube vids or the online forum that is run by her cohorts.  I end up with multiple sources up on the screen jumping between them trying to follow the complicated logic.  I have a hard enough time following one source never mind this scattershot style of writing.  I keep running across the line "I've already written about this.  Just look it up in xyz." or some such variation.  I also have no idea who the people are on the forum that answer questions.  I've used it and gotten some good answers but again they post Yasko quotes from multiple sources without the context of the quote so I have no idea of the original source or if it is applicable to my case.  I have to trust these random folk on the internet.

The other issue I have with her is that she is too general.  If you use any of her tools or tests or go through her protocol you end up with a supplement list a mile long with the instructions "try a few and if they don't work for you try something else on the list".  Yeah, that isn't helpful at all.  Many of the suggestions are compounded supplements with TONS of ingredients in them.  Trying to sort this out with brain fog is next to impossible.  I finally had a good day this week and started cross referencing the ingredient lists of the 50 or so supplements recommended to me based on my genetics and hair metal analysis test.  Turns out they all overlapped significantly to the point where I whittled the list down to four or five pills.  When I looked up another vendor I found one that whittled it down further to a single supplement.

I still have work to do to figure this out but I'm pretty much done chasing my tail with Yasko.  Now that I've found this new book I'm ready to move on.  I might return to Yasko later as I trust her for my source of MTHFR info but I need my brain working better before I can do that.  So for now I'm switching over to Murphree's protocols starting with his MCS instructions.  Not only does he list supplements but also dosing information.  I'm quite excited to try this out.

Wednesday, October 8, 2014


This is probably going to be the oddest TV show review that you are ever going to read and yes it is going to be somewhat uncomfortable.

I LOVE science fiction.  I've read it since I scared myself silly back when I snuck about reading one of my dad's books when I was 12 or 13.  It was, to me at the time, a very scary story about an invisible monster alien.  Ever since then scifi has been my favorite genre.  Needless to say the bulk of my TV and movie watching are science fiction shows.  I loved the first three seasons of Torchwood which is an adult version of Dr. Who, a show I've watched since I was a kid when Tom Baker was Dr #4.  The third season didn't go so well and almost got the show canceled until Starz picked it up for a joint season with the BBC.

I was very angry that Starz locked the fourth season out.  Only Starz subscribers could see it.  I was very angry at this turn of events.  I wanted to see the last season.

This past month I decided to subscribe to Amazon Prime so that I could get access to Falling Skies and Orphan Black both scifi shows that I've heard a lot of good things about and low and behold I found the last season of Torchwood also available.  So with much excitement I've spent the last three days binge watching it.

Warning spoilers ahead.  If you don't want me to ruin the ending for you stop reading right now.

The show somewhere along the line lost its way.  This last season strayed very very far from its original format and the quirky bits that originally drew me into it.  Two things really stood out for me and got me wondering just who the heck wrote this thing:  lots of gay sex, and an artifact that looks like a giant three story high vagina that needs the main characters' male blood sent into it to return the world to rights.  There is a subplot about a pedophile that become famous, some fat shaming and grossly misogynistic bits thrown in for good measure.  All leaving me to wonder what the hell were they thinking!?!  Did some woman hating gay guys write this?

I am a prude and don't really like butt naked hetero sex scenes never mind same sex scenes.   While I am glad that this is finally getting air time and it is becoming normal for gay characters to hold leading roles in shows while being in romantic relationships, I seriously don't need to see their very naked butts.  Please note that I say the exact same thing for straight sex scenes.  Lets leave something for the imagination please.  This is supposed to be a regular TV show and not some mild porn.  Okay, I'm almost off my soapbox.

If it were just the above, I would let things rest and just chalk it up to the writers getting some much needed air time and equal opportunity for the gay community, which I'm 100% behind as long as I don't see any behinds.  However,  and this is a big one, what the hell is up with that three plus story high vagina that is screwing up the entire world?  And why do the two main male characters of the season have to bleed profusely into it to set things right again???  I forgot to mention that rocks are constantly being pulled into it.  People with impure soles die when they are in its presence.  It is a huge life sucking vagina.  Something I read in the very distant past, mentioned that this was a man's worst nightmare, a vagina that sucks them in and mutilates or kills them.  This is the first EVER science fiction show, movie or book that I've read or seen that has had this imagery in it.  I mean they could have made it look much less vagina like, say making it round instead of a huge slit or gray instead of various shades of pink.  They could have had the main characters jump into it rather than have them bleed into it.  Rocks and debris didn't have to be constantly sucked into it.  I mean come on!!  This is just horrible!!  What on god's green earth were they thinking???  At least the pedophile killed himself in the end and was generally a despicable character through out the season.  Bill Pullman did a good job of playing him as a not quite right in the head character.  However, I want to see aliens and spaceships and weird technogadgets not pedophiles, gay sex and huge life sucking vaginas.

After watching the disaster of the last episode I can now say that I'm happy that it got canceled.  I might at some point in the distant future watch the first two seasons again since those were good.  But I'm not watching the last two ever again.  Not worth the time, even my copious amounts of time.

Monday, September 29, 2014

30 Things Meme

I did this one back when I first got sick.  I'm going to do it again now, five years later, without looking at my old post.  I'm curious how many of my answers have changed.

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Chronic Fatigue Syndrome/ME, Fibromyalgia, Osteoarthritis, Fluroquinolone Poisoning
2. I was diagnosed with it in the year: CFS/ME & Fibro were diagnosed in 2011, Osteo around 1998
3. But I had symptoms since: Fibro I can trace back about 25 years, CFS/ME was sudden onset in 2010 and the arthritis built up over fifteen years after a fall down the stairs in 1990.
4. The biggest adjustment I’ve had to make is: Not having the energy or brain power to do ANYTHING
5. Most people assume: I'm just tired
6. The hardest part about mornings are: Knowing that I only have 2-3 hours to get everything done before I run out of energy for the day.
7. My favorite medical TV show is: ER
8. A gadget I couldn’t live without is: Crockpot
9. The hardest part about nights are: Being nocturnal so most of my waking hours are during the dark.
10. Each day I take __ pills & vitamins. (No comments, please) I am supposed to take 25 pills a day, on a good day I manage 16 but most days I only get down 8-10.  I'm also using three spray supplements and an IV infusion twice a month.
11. Regarding alternative treatments I: have had some success with acupuncture, massage and chiropractic.  I've had to stop massage and acupuncture due to cost.
12. If I had to choose between an invisible illness or visible I would choose: VISIBLE
13. Regarding working and career: What career?  I'm so far behind in my field at this point I doubt I could get hired back.  If I were well enough I might be able to work again, but at my age I doubt I would get anywhere career wise.  My only hope would be to go and get a PhD.
14. People would be surprised to know:  I have HUGE trouble reading books and articles.  I can only read in short spurts and even if I manage to comprehend what I read it is often forgotten shortly afterwards.
15. The hardest thing to accept about my new reality has been: the lack of support from family and the loss of friends
16. Something I never thought I could do with my illness that I did was: manage to get through the heaps of paperwork required for disability.
17. The commercials about my illness:  There aren't any for CFS/ME.  The drugs for fibro are useless.
18. Something I really miss doing since I was diagnosed is: ice skating
19. It was really hard to have to give up: ice skating
20. A new hobby I have taken up since my diagnosis is: I just do my old one, watching movies.
21. If I could have one day of feeling normal again I would: Travel
22. My illness has taught me: the true meaning of the Buddhist idea of impermanence and living in the moment
23. Want to know a secret? One thing people say that gets under my skin is: "Oh I get tired all the time too."
24. But I love it when people: Bring me food (this has only happened once)
25. My favorite motto, scripture, quote that gets me through tough times is: "This too shall pass."
26. When someone is diagnosed I’d like to tell them:  "Ask me anything.  I will try to help."
27. Something that has surprised me about living with an illness is:  I can enjoy living the quiet life.
28. The nicest thing someone did for me when I wasn’t feeling well was:  Bring me food.
29. I’m involved with Invisible Illness Week because:  Others need to know that people are suffering and that CFS/ME is real and can strike down anyone at any time.
30. The fact that you read this list makes me feel: content.

Thursday, August 28, 2014

Sister Dearest rev.2

There is no doubt that relationships of all kinds are stretched to their limits when you become chronically ill.  Sometimes those relationships break.  

I originally wrote this post two weeks ago when it was all still very raw.  I had to save it as a draft because it was long and nasty and angry.  So here is the revised version.  While it sticks to the facts more and I don't ramble as much, I still get incredibly angry so there are some bad words in it.  Consider yourself warned.  

It has been only two weeks but it already seems a lifetime: I broke off all contact with my sister.  Things have been weird between us for about two years.  She stopped visiting.  I can't travel so that meant no contact.  We were never ones to chat via phone or email.  Mostly I would hear from her when she wanted something.  So this meant no conversations casual or otherwise.  We did visit in passing at family functions. Mostly it was the big hug at the beginning and end of the visit like we were long lost pals but the bulk of the day would be me joining conversation groups only to have them dissolve around me.  After a few attempts at having conversation with various family members, I would decide I was too tired to participate in this game and go into a quiet room to sit by myself for the remainder of the event.  

The cold shoulder from my sister reached new heights this year: I had to invite myself over to my brother's for the family Christmas get together (he never hosts Christmas so I can only imagine that my sister instigated it).  Both my brother and sister didn't visit Mum and I when we were all on Cape Cod together this spring.  Then I wasn't invited to a family dinner this summer that my sister had arranged.  

I had enough by this point and called her out on this.  I sent her a simple to the point email asking why I had been excluded.  (You have no idea how big a deal this is for me.  Standing up to my sister is like challenging Thor.  You risk bringing her wrath down upon your head.  I was proud of myself for sending the email.  It took great amounts of courage for me.  Anyway, I digress...)  I got odd lame excuses for the exclusions.  Things like it was all my brother's fault for the Christmas exclusion even though he never makes arrangements and she ALWAYS invites him to my house.  Or that it was my fault for not arranging the dinner party myself.  While this isn't stellar behavior, it is what I expected from her.  If it was only that, I might have dropped the entire thing.  However, the second half of the email took the biscuit.

The first paragraph was a bizarre attack on my husband for some slight that occurred over two years ago.  None of us can figure out what happened to prompt this.  My sister though has never gotten over her man hating days.  Going through three and a half husbands doesn't elevate her opinion of men either and I think my husband is just a convenient target.  Misandry at its finest.  

I do know hubs was horrible during the first year of my illness and I did almost leave him.  However, he has turned things around and our marriage is almost back to normal now.  It took two years but it looks like things are back on track.  My sister on the other hand seems to want war.  

Okay, horrible and weird but still not a pull the plug on the relationship offence.  This is just normal bat-shit crazy sister stuff that I've come to expect from her.

The next paragraph was the kick in the teeth though: 
"I surround myself with positive people. ...  I choose to have positive thoughts and be with positive people. People that can see the good in everything.  [sic] Not the little negative nit picking little things. ...  Bottom line [sic] I believe that you and I have never had anything in common and never will. ... I wish positive things for you but I do not choose to be around you."

I did do some heavy editing but it was necessary for clarity.  The actual paragraphs wandered all over the place: telling me how awesome my brother was for taping my mom skating; accusing me of mocking my brother; accusing my husband of making jokes at others' expense; accusing me of laughing at said jokes; she doesn't want to be in the same room with my husband; her wishing I would get well; etc, etc.

I would have thought she wrote this while drunk but it was sent at 8:30am.  The writing was all over the place hopping from topic to topic.  But, the basic gist was I'm a bad person, my husband is a bad person, and she wants nothing to do with either of us.  Sorry you are sick but fuck off.

Involved in the middle of that mess was the following question:
"If you were handed today a miracle pill that you could take, and your CFS and other ailments would just disappear - which means that you would have to go back to work tomorrow, clean the house again, and lead a "normal" life....would you take the pill?"
How bloody insulting is that!?!  I've done nothing but try to find a cure or even symptom relief.  Some of my "cures" have made things worse (see the posts on Cipro).  Luckily most cures have been ineffectual or had side effects that went away when I stopped taking them.  Some have helped as I've talked about before.  I would love nothing more than to lead a normal life again.  I HATE HATE HATE her for even asking this.  How horribly mean is this????  She is implying that I like sitting around the house not doing anything.  That I like being sick.  What the ever living fuck!?!

 I just can't write about this without getting horribly upset and angry.  How DARE she!?!  Positive thoughts my ass!

So after much hand wringing, discussions with hubs and mum and my therapist, I cut off all communication with her.  I sent her a brief email stating "There will be no further communication between us.  I will only contact you with regards to Mum's health and well being.  I have copied Mum and [brother] to make them aware of the situation."  If I engaged with any of her content, then a massive massive fight would ensure.  I wouldn't win.  It would take a huge amount of energy on my part for very little gain.  I thought long and hard about things and decided that the best course of action was to severe all contact.  Even my therapist told me that it would be the healthiest thing for me to do; the best way to take care of myself.

You know what I felt afterwards?  Relief.  I'm done with her.  I'm done with her crazy.  I'm done walking on eggshells around her scared that I'll set her off and get yelled at.  I don't have to host any more weird family gatherings where the only people that actually talk to me are my Mum and my niece.  You would think that after feeding and hosting that lot for decades they would at least talk to me.  Fuck them.  Fuck them all.  I'm done.

In an odd way I feel like this illness has been an opportunity in disguise.  I have lost friends and am now shedding family.  I have lost my job and my career.  But in return my relationships with my mother and son are better now than before.  Hubs and I are on the mend.  I can pick a new job.  I can make new friends.  I can make my life so much better than it was.  All new and shiny and one that will hopefully make me happy.  I'm looking forward to my new life.  I think it will be spectacular.

Saturday, August 23, 2014

CFS vs. Broccoli

Several years ago I tried (and failed spectacularly) to follow Dr. Wahls diet.  In it she calls for NINE cups of vegetables with three cups specifically cruciferous vegetables; i.e. broccoli, cauliflower, cabbage, brussel sprouts, etc.  I ate all of these growing up so I dove in with gusto.  With each meal, I had something from the cruciferous family.  With each meal, my heartburn got worse.  It got so bad that it felt like someone was holding a blowtorch to my chest and it was set on max burn.  Holy cow did it hurt.  I called my integrative doc and asked what the heck was happening.  He asked about my diet and I told him I had switched to Wahls' protocol.  He immediately told me that the heartburn was directly related to the cruciferous vegetables and that I had to cut back.

Nutso.  So much for that plan.  I knew of two people that had their CFS drop to non-existent or manageable levels after incorporating huge amounts of vegetables in their diet.  Here I was stuck with rip my chest out heartburn.

Now, two years later, I find this little gem:
"Is Broccoli Good For You?"
Turns out that a chemical in cruciferous vegetables:
  • Poisons mitochondria (cell energy generators)
  • Inhibits microsomal enzymes in the endoplasmic reticulum (cellular manufacturing and detoxifying centers)
  • Generates reactive oxygen species (these are damaging “pro-oxidants”)
  • Interferes with thyroid iodine absorption
  • Disrupts epithelial barriers (can poke holes in sheets of cells)
  • Depletes glutathione levels (the most important antioxidant inside our cells)

So maybe eating broccoli isn't such a good idea for me.  Maybe my heartburn is trying to tell me something.  One of the reasons that I trusted Dr. Wahls is that she has done extensive research on food, diet and MS.  This is how she developed her diet plan.  Makes me wonder how she decided that we need such a huge amount of cruciferous vegetables in our diet to make us healthy.  This article is the complete antithesis of her work.

In my case it doesn't really matter because right now I can't eat much of any of the cruciferous veg.  Even sauerkraut is giving me heartburn two hours later.  Dang.  I am so not happy about this.

Friday, August 22, 2014

A Question

I'm in the beginning stages of learning biochemistry and neurochemistry so I'm not completely sure I'm interpreting this correctly.  If I am guessing correctly, then I just pulled on the right string in this huge knotball of an illness.

In the video (I posted yesterday) the modeler discovered that CFS/ME patients were all deficient in Phenylalanine.  Of course I had to look this up on Wikipedia:

Two things jumped out at me:
1) If people can't metabolize pheylalamine, they have to monitor protein intake to make sure they don't eat too much.
2) Pheylalamine is involved in neural glutamate receptor binding/activation.

If I'm reading into this correctly it explains two things to me:
1) CFS patients have too little pheylalamine rather than too much.  My craving and eating large amoutns of protein might help build up pheylalamine levels in my system since it is deficient.  I always feel better after eating a heavy protein meal.  Light meals even with small amounts of protein just don't cut it.  I feel lousy later and need to eat again much sooner than normal for me.
2) The phelalamine deficiency might be the origin of the glutamate/GABA imbalance in the brain.  Makes me wonder if the same underlying mechanism exists in autism.  The supplement protocol I'm following was originally designed for autistic patients who also have a glutamate/GABA imbalance.  Maybe the trigger is different but the same treatment works for both.  No matter; it seems that the pheylalamine shortage might be the cause of excess glutamate in the brain.

Now take all of this with a grain of salt since I'm guessing here.  I could be totally wrong.  It is interesting none the less.  I'm looking forward to the treatments that Dr. Klimas and company come up with if the pheylalamine model works out.

To be honest I looked up the Wiki article hoping that I could figure out which supplements I could take.  However, reading the article, it sounds too dicey.  It would be playing with brain chemistry in a big way based on an unproven chunk of science.  Mathematical models don't always work out the way we want when applied to real life.  I'm already making people nervous screwing around with genetic testing and taking supplements based on a doctor I found on the internet.  This would be too cutting edge even for me.

Thursday, August 21, 2014

CFS/ME In The News

Finally some encouraging news from people researching CFS/ME.  People are finally starting to look at the illness as a systemic, dynamic one and looking into genetics/epigenetics.  WOOT!!  This is so very exciting!

First a YouTube video on the mathematical models being developed.  From what I gather it looks like it is based on modeling of dynamic communications networks (yes I used to listen to lectures on this stuff prior to getting sick: I know more about optical packet networks than I care to).

For some reason I can't embed the video but here is the link:
And an article on the video:

Here is an article on epigenetics and CFS/ME:

Good stuff!!

Thursday, July 31, 2014


This is a TMI post about girl stuff.  Consider yourself warned.

So roughly two months ago I started Yasko's short cut protocol for MTHFR defects.  I'm taking her

  • All in One Vitamin
  • Ultimate B Complex
  • Phosphytidyl Serine Complex
  • Be Calm Spray (GABA/Glutamate balance)
  • Resveratrol Spray
  • Amino Acids Spray

I'm also taking
  • Lithium Oratate (for deficiency and per protocol)
  • Ubiqinol (per short cut protocol)
  • Zinc (for deficiency)
  • Iodine (for deficiency)
  • Potassium (Celebrex depletes potassium and it helps my muscles)
  • Grape Seed Extract (per protocol)
  • NAC (left over from CFS/ME protocol: good for mito function)
I've been taking this cocktail along with my two meds for just over two months now.  I've been having trouble with my period since January sometime.  After going on the protocol it kicked into high gear.  Constant bleeding and passing clots.  I became anemic and got very dizzy and tired from it.  I ended up in the ER and at the ob/gyn's office.  I had an ultrasound done (they found fibroids but nothing really large): I had a biopsy done (came back clean).  The doc declared estrogen dominance and gave me prescription strength progesterone.  I wasn't too worried about it since progesterone is on Yasko's list of optional supplements for balancing GABA and Glutamate. 

Four pills later and I felt like crap.  I was back in bed again unable to do anything.  I looked into the MTHFR protocol.  Turns out women start menstruating when they start the protocol and it is often very heavy.  It eventually stops but I found many stories of this happening so it wasn't just a single random person.  I just wish it had been mentioned somewhere so I didn't have to get all the tests done and be worried that I might have cancer or some such.  Geesh!

Anyway, after finding this out I stopped taking the pills since they were making my CFS/ME so much worse.  The heavy bleeding had abated by this point anyway.  Woot!  Other than the odd random spotting I've been period free for almost two weeks now.  Woohoo!!   

Having multiple things wrong at the same time makes diagnosis and tracking that much harder.  CFS/ME, fibro, osteoarthritis, floxing, possible menopause and now MTHFR protocol thrown in for good measure.  Dear god the pain.  The blood.  The hot flashes.  Just make it stop.  

At least the protocol is helping.  There has been a steady and marked improvement in my CFS/ME symptoms since starting the protocol.  Now if my girl parts would just behave themselves and I could cut down the joint pain from the floxing I would be pretty happy.

Friday, July 18, 2014

On Becoming a Floxie

I've only partially told my Floxie story.  Now that I know more I can put things together better.  So here is my story and how it relates to my CFS/ME.

In December of 2012, I got a very bad UTI and ended up in the ER.  I told them about my CFS/ME and how infections tend to rapidly get worse because of my compromised immune system.  So they did some tests and put me on an IV of Levofloxacin which is the drug of choice for UTIs.  Shortly after starting the IV drip all of my joints started to hurt.  It slowly got worse.  I thought it was from lying in the uncomfortable bed for hours while waiting for the test results to come back.  I thought it was my fibro acting up.  I was already completely drained due to running to the bathroom every 15 mins while being in a bad CFS crash.  I had the shakes and headbobbing before lying down so it only made sense to me that my pain levels were now escalating.  Thing was, this was bad and it continued to get worse.  Then I had a full blown anxiety attack.  I wanted to rip the IV out and run screaming from the ER.  I felt chained to the bed and like I was being held prisoner.  I wanted out.  I started to cry.  Hubs rang for the nurse and I told her I was in horrible pain.  Every single joint in my body was screaming by this point.  I was sitting up clinging to the bed rails and crying.  The nurse mercifully pumped me full of morphine.  I very quickly collapsed back into the bed, drugged and pain free.

Looking back I now know that my body had it right.  I should have ripped the IV out.   My body was fighting the toxin invading my joints.  This was the first indication of being Floxed.  The pain levels were way above anything I have ever felt during 25 years of being a fibromite and 3 years of being a CFSer.

I went home with Cipro pills which I dutifully took.  However, I slowly declined again and ended up back in the ER on Christmas night.  This time I had a Cipro IV.  Again they had to put me on morphine for pain.  This time though they gave me the morphine first so I have no idea if the Cipro caused any joint pain that night.  I went home with Bactrim pills.  I finally got rid of the UTI but the fun and games only just began.

Once the UTI cleared a miracle happened.  My CFS symptoms dramatically improved.  I talked to all of my doctors and no one could figure it out.  I asked if it could be the antibiotics clearing up a case of chronic Lyme (since the Lyme patients insist that any improvement while on antibiotics is proof positive that you had Lyme all along) but my doc said no.  The recovery happened too fast.  Lyme takes much longer to resolve so something else was afoot.  Now that I could read I started looking at science papers on Cipro and Levofloxacin.  I discovered two things: Cipro screws with the GABA balance in the brain and Levo causes tendon damage and anxiety attacks.

So, the Cipro did a fantastic job of restoring the GABA/Glutamate balance in my brain making my body function well again.  Not cured but holy crap what an improvement.

The dark side that I was ignoring however is that I had to start Prozac because my anxiety levels were through the roof.   I was having meltdowns at every meeting I had with my shrink.  Normally this doesn't happen very often.  I was crying through virtually the entire one hour session.  Every. Single. Time.  Just not like me at all.  The prozac helped tremendously but I knew I still wasn't normal.  I had an inkling that there was a chemical imbalance but at a loss as to the cause or the cure.  At the time I had no idea that it was the Cipro/Levo poisoning that was causing it.

Then my left knee swelled up like a balloon.  It looked like I had injured it figure skating except I had been lumping on the couch due to the UTI making me so sick.  It hurt like the blazes and I had to ice it, wrap it and put Traumeel on it.  I often couldn't put weight on it because of the intense pain.  The joint pain slowly spread to my entire back, shoulders and arms.  I was downing both Celebrex and aspirin everyday.

So even though I was doing way better with my CFS/ME symptoms I was in huge amounts of pain and having anxiety attacks.  Not knowing that this was from the Cipro and Levo I went back to the doctor for more Cipro when my CFS symptoms slowly got worse.  I took the pills.  Felt great CFS wise but my knee got worse.  By this point I was off the prozac so my anxiety went up again.  At some point in this mess, I also started to have nightmares.

I was walking and swimming and cooking and driving and reading.  While I was excited this was all happening I was also in a knee brace, going through tubes of traumeel, having nightmares and mild anxiety attacks.  Life was good.  Then I had another UTI.  Back to the hospital again.

This time I had a massive anxiety attack when they loaded me up with morphine.  Normally I'm calm as a cuke.  Not this time.  I had shortness of breath, dizziness, again the feeling of being trapped and wanting to run.  Pain was pretty bad from sitting on the uncomfortable bed.  The morphine knocked me back but I was still worried so they put me on oxygen for no reason.  Then they pumped me full of Cipro.  I forget what pills I went home with.

This time I went lame.  I was on crutches.  I couldn't put any weight on my left knee at all.  My CFS symptoms were in significant remission but I couldn't walk.  Shit.

I made the rounds of the doctors.  No one could help me.  My regular doc had never heard of Cipro poisoning.  My CFS doc flipped and told me to never take Cipro or Levo ever again.  He told me that he had patients that were permanently lame from them.  

After much deliberation I decided to never take any of the fluoroquinolones ever again.  I want to go figure skating again and going lame permanently was just too high a price to pay for gaining ground with my CFS/ME.  Since the docs couldn't help I went back to my trusty acupuncturist to work on my knee and the Cipro poisoning.  Woohoo!  Best decision.  Very shortly after seeing him I got off the crutches.  Many months later the pain shifted from the left leg to the right leg which to him was good news.  Many many months later I was walking but my lower back was very painful and limited the duration of any type of movement.  This summer after little improvement I decided to take a break.

My current status is that I have quite a bit of joint pain in my lower back, both hips, right knee and right ankle.  Sometimes my shoulders and elbows join in the fun and every once in a while my wrist and hands but that is rare.  I'm no longer having nightmares or anxiety attacks.  I find that I have to take a vitamin E complex to help with the joint pain (found this in some science paper or other) and often use MSM cream and Traumeel if the pain is unbearable.  I probably should use them more.

The CFS/ME has improved now that I've been on Yasko's MTHFR short cut protocol for several months.  It rebalances the GABA/Glutamate levels in the brain.  I'm back to reading, walking, cooking, and driving short distances.  However, none of this is done without pain.  I can't stand as long as I would like or move around as much as I would like due to searing pain in my lower back.  The break from the acupuncture seems to have done some good since my right knee is no longer screaming at me but the muscles in my right leg seem to be overly tight often forcing me to walk on my toes.

So I have been Floxed.  I am a Floxie.  I have yet another patient group I can belong to and yet another Facebook page to follow.  Not something that I'm very happy about.  I'm already following fibro, CFS, MTHFR and mold pages.  Ugh.

Many of the other Floxies are trying to sue the hospitals, doctors and drug companies.  I don't feel like I can.  I almost insisted that they use the strongest antibiotic on me when I went to the ER.  I'm not sure they would have treated me any differently had I not been a CFS patient but that is a moot point.  Then I went to my own doc asking for more Cipro pills because I had such improvement with my CFS.  I had no idea that the pain, anxiety or nightmares had anything to do with the Cipro or Levo.  If I thought it was my fibro and CFS acting up how on earth can I prove it was the Cipro and Levo in a court?  Plus I really don't want the stress involved.

I am really ready to walk away from the entire thing.  Or should I say limp away...  I really don't want yet another patient identity.

Thursday, July 17, 2014

Going Down the Floxie Rabbit Hole

Weirdly a doc running a MTHFR forum referred me to a Floxie page.  A floxie is someone that has taken a fluoroquinolone antibiotic (Cipro, Levaquin, Avalox, etc) and has chronic debilitating side effects from it.  In my case it is chronic debilitating joint pain in my lower back and legs.  Upon entering the new Facebook page, I feel like I've fallen down another rabbit hole.

I have such mixed feelings about the group.  A lot of them are really really angry.  Many of them are telling me that I don't have CFS/ME and that I must have been floxed prior to my diagnosis.  Many of them are trying to sue the drug companies.  All of them are looking for cures or at least symptom relief.
It sounds like a duplicate of every other rabbit hole I've explored: Lyme, mold, CFS, ME, autoimmune illness.  Each one insists that the set of symptoms are caused by what they are advocating.  I've been told that I really have Lyme, that I've been exposed to mold, etc.  Now they are insisting that I got floxed before getting sick.  Um no.  I was on zpacks not the fluoroquinolones.  Anywho...  This all gets tired pretty quickly.  And I tend to get combative much too easily.  I hate being told by a complete stranger that I just met on the internet that I have my diagnosis all wrong.  It just ticks me off.  So I'm irritated with the group but reluctant to leave it since they post a LOT of useful information there.  I've also found that I can give some useful info regarding diet and what has worked for me as a CFS/ME patient.  I like helping people.  But I also find that they are clinging and desperate.  They keep asking me for the list of supplements that I take.  I keep refusing since it was based on genetic and blood testing so it may not be the right thing for them.  Again irritating.  I want to help but these guys are so sick and so helpless and I'm not a doctor.  Many of them just want a list without getting the testing done and it just isn't that simple.  Sigh....  Enough grousing.

What strikes me as odd is that ALL of these illnesses share almost identical symptom sets.  Which is part of the reason that each new forum I wander into the population insists that I've been misdiagnosed and I'm really one of them.  Sweet on the one hand but very irritating on the other.

So it seems to me the basic model is that while all of these illnesses have a different trigger, tick bite, mold exposure, antibiotic use, the body craps out in an almost identical way.  Somehow the mitochondria become damaged and the brain and/or CNS become inflamed.   Makes me wonder if chronic Lyme is really damage from the antibiotics and/or the bugs damaging the mito.  They are all way too similar to each other.

This group as with all the others have their own mythos as well.  Claims that the body damage can occur months to years after exposure.  Neuro damage, CNS damage in addition to the acknowledged tendon damage.  Claims that the drug erodes nerve cells.  And other odd things.  Basically people with little science background trying to explain what is happening to their bodies.  There is quite a lot of stuff on fluoroquinolones in the science literature but you have to be a microbiologist to be able to read it.  No wonder the science is being buried in the mythos.  Makes me very dubious to read many of the postings.  I prefer to read the actual science papers.

I'll probably wander around in the Floxie rabbit hole a bit longer but wander back to the MTHFR rabbit hole soon.  That hole seems to hold more answers for me than the Floxie one.  Maybe they are related as well.  Things that make you go "hum....".

Friday, June 27, 2014

Sam E Follow Up

BTW, I stopped Sam E a week ago after I woke up after four hours of sleep with a severe case of restless leg syndrome.  I don't normally have RLS so this freaked me out.  And it annoyed the hell out of my cat who was trying to sleep on top of my legs.  Luckily I saw my acupuncturist that day and he did a detox treatment (I love acupuncture for treating drug/supplement side effects.  It works awesome!).  I had the best sleep I've had in months that night and the following two nights.  Anywhere from 8-12 hours of solid sleep.  No waking up.  Just blissful heavy sleep.  Now that I'm off Sam E and catching up on sleep I'm feeling WAY better.  I guess no Sam E for me.  It just doesn't agree with me.  As far as I can figure I had too much dopamine in my system.

CFS and the HPA Axis

Every system in my body went wonky when I contracted CFS.  Thing is everything is so interwoven and interconnected I'm never sure which string to pull on first to mitigate some of the symptoms.  

Here is an interesting tidbit on why sex hormone regulation goes on the fritz.  

the enzyme that converts cholesterol to pregnenolone is limited, and it requires a lot of ATP, which is cellular energy.  It’s an energy-intensive process.  That means that the amount of pregnenolone we can make in the body is limited
Turns out that pregnenolone is the master hormone which regulates everything else in the body.  Guess what we have a shortage of with CFS?  Yup, ATP.  We have very limited cellular energy.  I must interject here that my general health did improve when I added more cholesterol and fats to my diet.  However, before I can say definitively that it made a huge difference I have to say that I made the switch to Paleo at that point so other things may have been a factor in the improved health.  Anyhoo, I digress.  Back to the topic at hand....

Oh and if we are under stress (read that as "sick") then the little amount of pregnenolone we do manage to make is converted into cortisol.  So for us CFSers it is pretty much a lose-lose situation.  So what happens downstream if we don't have enough pregnenolone as women (men are different)?

  • low progesterone-high estrogen
  • possible PCOS
  • hair loss
  • facial hair growth
  • loss of sex drive
  • irregular periods
  • mood imbalance
BTW, that entire list describes me except for the PCOS.  One of the first things that went wonky on me was my period.  I also started growing a nice mustache and I'm a girl.  Not that I had great sex drive before I got sick but I have NONE at all now.  My mood has stabilized since going Paleo but I can still have bad days as evidenced by this blog.   Also, my hair doesn't fall out by the handful anymore which I'm very happy about.

The gut issues we almost universally have as CFSers also gets into the act:
Impaired gut function can mess with hormones in several different ways, so if you have a parasite or a fungal overgrowth or dysbiosis or leaky gut, that causes inflammation.  Inflammation suppresses the function of the hypothalamus and the pituitary in the brain, which produce the stimulating hormones, and then it also suppresses the function of the adrenals and the ovaries and the gonads in men that produce the actual hormones.  Inflammatory cytokines can also cause hormone resistance, 
Interesting that he mentions inflammatory cytokines which are a known problem in CFSers.  Another strike against us.

As for myself, I've tested negative for everything except leaky gut.  I have done what I can with my diet and my gut is definitely doing better than five years ago.  However, I'm not perfect as I've mentioned before and cheat WAY too much.  I'm not sure I can ever climb back on the perfect Paleo bandwagon.

While there is lots of good basic info in the podcast, the author never really gets around to saying how to treat this properly.  People even complained about this in the comment section but there was nothing forthcoming from the author.  I did find it interesting how so much of the CFS issues overlap with HPA problems in the general population.

Here is the link to the podcast:

Here another somewhat unhelpful article on how to fix the HPA when you have CFS:
Mind that the article is written by a dietitian and not a physician.  Basically she covers the use of low dose hydrocortisone (which I did with mixed results: not much improvement but I did win an extra 20 pounds of body weight), getting adequate sleep (but she has NO idea about the severity of sleep dysfunction in CFSers and offers only the usual sleep advice) and reducing stress levels via meditation.   Like I said not helpful.  I need to do some reading on other sites regarding fixing the HPA axis preferably without drugs.

Even though these two pieces didn't help with fixing the problem I do like it when I learn what the problem actually is.  That knowledge gives me things I can search for on Dr. Google.

Thursday, June 19, 2014

The Sam E Conundrum

It has taken me a while but I've managed to get all of the pieces of Yasko's short cut protocol in place.  While reading her book Feel Good Nutrigenomics there was a chapter on Sam E in which she recommends adding it to the short cut protocol.  All fine and dandy.  I happen to have some in the fridge from some other protocol I tried or something I read somewhere.  (great memory can you tell??)

Anywho, I started the Sam E.  All sorts of nasty things happened.  Lots of mood alterations, heart palpitations, heartburn, trouble sleeping despite my sleep meds.  So off to to see about side effects of Sam E.  Much to my dismay I can't take it with the drug I'm using for sleep since it is really an antidepressant and Sam E can interact with them and cause what is called a seratonin storm.  Take it from me it is pretty unpleasant and if I hadn't caught it early it can be fatal.  Ugh.  Now I remember why it is in the fridge.  I went through the exact same thing when I first got the Sam E; it interacted with the prozac and trazadone and I needed those meds more than the Sam E at the time.  Sometimes I swear my brain is trying to kill me off.

So after much debate with myself, I decided to continue with the Sam E and quit my sleep med for a few weeks to see how things settle out.  Apparently, Sam E can also lead to pretty severe detox so I cut back to taking it every other day.  I was still having nausea and heartburn but it toned down after about a week and I've been doing better in that regard.  Thing is my sleep still rots.  It is BAD.  I'm waking up often.  I'm very restless.  Can't get back to sleep after I wake.  I'm waking up tired which just gets worse each day as the sleep deprivation accumulates.  So two weeks into this and I'm doing horrible again.  First the brain fog came back so I couldn't read anymore and finally today my body crapped out on me and I'm having trouble walking.  I can't even see properly; everything is fuzzy and out of focus.  Sigh..

I had a nice chat with some people on Yasko's forum about this and they said to cut WAY back on the Sam E for now.  Like crush the pills and eat a small part of the dust way back.  So I decided today that my sleep is more important to me right now than the Sam E experiment so I'm switching back to my sleep med and dropping Sam E.  They also told me that I really need to get the GABA/Glutamate in balance first along with getting my lithium levels up.  They gave me a long list of supplements I could use but I'm too brain fogged to figure out which ones I should take.  It would suck if it was the entire list.  It will cost me a small fortune in new supplements.  

So my current game plan is to wait two days until the Sam E is out of my system then go back on my trazadone so I can get some good sleep.  Once that happens I should be back to functioning well again.  Crap I was taking short walks once or twice a week.  I don't want to be stuck on the couch again.  

I also found out that I can't take my zinc and lithium at the same time so I've separated those two.  Zinc in the morning and lithium at night.  They also told me to stop the taurine until I have a urine test done to see if I even need it.  So it looks like more testing will be in my future.  I'll need a hair metal analysis to find out how my lithium levels are doing and it will also tell me if I have any metal toxicity (I wouldn't be surprised if they find mercury and aluminum in my system since I've been exposed to both).  I'll also be having another pee test.  Such joy.  

This is going to be a very long two days.  Blech...  ALL I WANT IS A GOOD NIGHTS SLEEP!!!

Saturday, June 14, 2014


I've been out of sorts this week.  I know I'm doing better physically since I am amazingly bored.  I'm at that in between stage where I'm too sick to do anything but well enough to want to do stuff.  I really thought that this was just boredom but this evening I suspect it is something else....

A feeling of profound purposelessness came over me.  I used to set goals for myself: taking new classes, learning new subjects, getting pins at Toastmasters, passing tests in skating, putting in plants to improve the garden.  I can't do any of this now.  Not just physically but mentally.  I've been trying to learn about the methylation cycle and it is just too much for my brain.  I'm really trying.  I used to be really really smart so this is just killing me.

The last couple of days I've just given up.  All I've been doing is getting up, plopping onto the couch and hanging out on the internet all day.  The only time I get up is to prep food.  I have no motivation and really am just sinking in to despair.  I don't like this.  I'm not sure if it is just a chemical imbalance or a real crisis.  Maybe a bit of both.  More than likely I'll slouch around until my energy levels come up and then I'll be able to do stuff again and this will pass.  But in the meantime I'm going to mope a lot.

Wednesday, June 11, 2014

Taurine and CFS/ME

Been a while but I went through one of my withdrawal phases.  It happens.

Anyway, during my absence from here I've been doing tons of reading on MTHFR, genetics and supplements.  Details to follow at a later date.  Suffice it to say I'm seeing marked improvement in brain function now that I've been on Amy Yasko's "short cut" protocol for two months.  I'm reading again.  Woot!!  Still not tons of energy but I'm having more good days more often and shorter recovery periods after my bad ones. Improvement is slow but steady.  Double Woot!!

On to taurine...

I've been fascinated with taurine ever since my foray into trying to understand why Cipro made my CFS symptoms go into remission.  The only thing I could find is that it readjusted the glutamate/GABA balance in the brain which resulted in reduced brain inflammation.  Since I had a severe reaction to Cipro continuing to use it wasn't an option so I started looking for other ways to rebalance glutamate/GABA.  I ran across a couple of sentences in Dr. Wahls' book Minding Your Mitochondria that taurine supplementation would help.  However, it didn't go into why so I started supplementing with it with minor but noticeable improvement.

In the meantime, a Japanese study came out showing that yes indeed brain inflammation was present in CFS/ME patients.  Nice to have my own suspicions confirmed (my CFS symptoms improved dramatically after steroid shots for an unrelated problem but only lasted the month that the shots were effective for). Actual paper:

Today I ran across this presentation by Dr. Stephanie Seneff (BA in biophysics, EE in Electrical Engineering and PhD in Computer Science all from MIT and she is currently on staff at MIT: i.e. a very very smart woman) on Taurine and it all ties neatly back in on itself: taurine, brain inflammation, sun exposure, nitrous oxide cycle, mitochondrial dysfuction, toxin buildup, etc, etc, etc.

It gets a little technical but is fascinating how this all appears to be interlaced.  Looks like I'll be adding taurine back in to my supplement regimen.  I had paired down to only Yasko's supplements so that I could see how the raw protocol worked and so that I didn't have any drug/supplement interactions (which did happen. twice. yuk!).  Now I'll add it back in and cross my fingers.  Yasko claimed that taurine could build up in the brain but Seneff says that is a good thing.  My impression is that Seneff has a better grip on taurine chemistry than Yasko does so I'm adding the stuff back in.  And the Grand Experiment continues....

Thursday, May 8, 2014


Today is my sickoversary.  I came down with a virus May 7, 2010 and didn't get better.  My son had the same thing and he recovered fine.  The mystery continues.

I've already had my pity party yesterday when I had to look through my diaries in prep for my first gyno exam in three years.  I spent a while grieving for my lost life: skating, Toastmasters, gardening, weight lifting, working, etc.  But instead of wallowing in it on this page I've decided that it is time to make a list of what has helped me over the last few years.  Some of it helped a lot and some only a little but when I'm this sick I'll take even minor improvements.

Things that have made a dramatic improvement in symptoms:

  • Glutathione IVs: this was my first breakthrough drug.  It helped detox my system and got me out of bed.
  • Paleo diet and fermented foods: helped heal my gut.  I got off both my heartburn meds and my cholesterol meds and drastically reduced my IBS symptoms.  I can now eat a little bit of wheat and not feel like complete crap the next day and I discovered I'm sensitive to corn so no corn based GF products for me.  Woot!
  • Iodine: since I mostly eat organic from scratch foods made with sea salt and I don't eat much seafood I have very little iodine and selenium in my diet.  For the selenium I started eating a single brazil nut a couple of times a week (not too many because you can OD on them).  I didn't notice much of a change with them but the iodine stopped my cold hands and feet and allowed my body to better regulate its temperature.  The selenium helps to regulate the iodine levels in the body so the two go hand in hand.  BTW, if you have thyroid problems don't take iodine or eat kelp without seeing the doctor first.  It can cause some serious problems.
  • Celebrex: Turns out that I don't metabolize this very well so a low dose works awesome for me for both joint pain the CFS headaches.  Hopefully I can drop this med at some point in the future but right now it is my main pain med.
  • Low dose Trazadone: I take this for sleep and it works great without a hangover the next day.  I don't sleep completely through the night but I get a solid six hours before waking up and falling into a more fragmented sleep.  It has made a world of difference in my sleep quality.
  • Bentonite clay and activated charcoal: when I first started these I noticed a huge difference in functioning the following day.  My head was much clearer and I just felt better.  I often piggy backed the glutathione IVs with the clay or charcoal to detox faster.  Now that I've done this for a couple of years I don't see such a dramatic difference but I still use them when I'm getting sluggish or suspect I've built up toxins again.  They are also great for combating stomach bugs and food poisoning.
  • Sunbathing: I only recommend this after going Paleo since the skin chemistry changes and burning no longer occurs or takes much much longer to happen.  Before I was always burning even after short duration exposures now I can sit out for half an hour or more before getting slightly pink.  I also feel fantastic the following day.  My whole system slows down over the winter and by the spring I'm like a slug.  This all lifts as I get more sun and build up my vit D stores again.  By fall I'm at the best time of the year for me.  Wish I were well enough to fly so that I could get some sun during winter months.
  • Complete rest for 20-30mins every 1.5 hours.  This is the natural cycle of the body.  If I do this I get fairly rapid improvements in energy levels.  Trouble is that once I have more energy the last thing I want to do is lie down in bed.  The only thing that helps with this is getting a good book on tape so that I want to lie down and listen to it.
  • Using a wheelchair and walker when needed.  The wheelchair in particular has extended my range drastically.  It allows me to shop and get out of the house.  It has a great effect on my mental health which is just as important as my physical health.
Things that make minor improvements:
  • ALA alpha lipoic acid: helps with pain but only a little but it is noticeable when I stop taking it.
  • Eating very very clean: this means fully pastured meats; 100% organic fruit, veg and nuts; only raw dairy from grass fed cows; no sugar at all other than honey; no coffee; no grains or beans at all.  There is some improvement in brain function.  However, I'm an emotional eater so bread, coffee and chocolate has crept back into my diet.  Although I know I do slightly better on a clean diet I just don't have the emotional willpower to stick to it for extended periods of time.  I really wish I could do the Paleo Autoimmune Protocol but dang I love food.
  • Niacin: When I first started this I did experience a niacin flush.  Now that it is built up in my system I don't notice anything when I take it.
  • Methyl B12 and methyl folate: I had to stop the B12 shots because they were too painful.  The sublinguals helped to build up my blood levels (which were very very low) but they didn't seem to help much with my CFS.  I did start taking B12 and folate together but that was me dabbling in the methylation cycle and I did a terrible job of it.  I would feel good for a few days and then go back to normal so I started taking them only once every three days but that didn't seem to work either.  I'm now starting Dr. Amy Yaskow's protocol so hopefully I'll figure this out.   Maybe I'll go from meh to woot!
  • Buying a new car that has a smooth ride.  I get way less fatigued and crash less after rides in my new car.  The worst I ever got during a trip was in the back of a wheelchair transport van.  I was bounced around like a sack of potatoes.  I couldn't even hold my head up or talk by the time they got me back to the house.  Worst trip EVER!  
That's everything that comes to mind right now.  I'm sure I've forgotten something.  Meh, that is part of the illness and I'm recovering from a very nasty stomach bug.  Hopefully I won't take such a long writing break this time.  ;)

BTW, Just a note: the above may not work for you.  We are all different and at a different point on the healing path.  These are things that helped me at various points during the last four years.