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.

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