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:  http://chriskresser.com/the-right-and-wrong-way-to-treat-hormone-imbalance

Here another somewhat unhelpful article on how to fix the HPA when you have CFS:  http://chriskresser.com/chronic-fatigue-syndrome-and-stress-a-new-frontier-for-treatment
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.

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 drugs.com 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!!!

Purpose

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.

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:  http://www.ncbi.nlm.nih.gov/pubmed/24665088

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.

http://people.csail.mit.edu/seneff/WAPF_Slides_2012/taurine_2012.pdf

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....