Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Wednesday, January 27, 2016

My wild adventure with Phosphatidylcholine

One of my doctors (Dr. M) recently recommended I treat with Phosphatidylcholine (PC).  Dr. M is convinced I have Lyme disease, which I’m highly skeptical about.  But since PC is often recommended for people with ME/CFS too, I thought it was about time I try it.

What is Phosphatidylcholine

Essentially, PC is a lipid that is the primary component of the cell walls within the human body.  As a supplement, sometimes PC is combined with other “lipids” in what’s sometimes called lipid therapy.  According to Dr. M, people with Lyme and ME/CFS sustain damage to the cell walls and taking oral PC helps repair the damage.  Healthy cell walls are critical to overall health for reasons too complicated for this post.  Dr. M stated that many of her patients report feeling significantly better on PC. 

At the same time I received Dr. M’s advice, I happened to be reading Dr. Richard Horowitz’s book, “Why Can’t I Get Better,” about Lyme, ME/CFS, Fibro, and other chronic illnesses.  At times, it almost seemed as if the author praised the benefits of PC therapy on every page.  This further motivated me to try it. 

If you read the Internet’s claims about what PC can do for people with complex chronic illnesses, they seem far too good to be true.  According to various sources, it reportedly detoxifies, repairs nerve damage, boosts the methylation cycle, repairs mitochondria, clears oxidative stress, repairs intestinal damage and treats ulcerative colitis, improves memory, and many other things. 

Again, this is all “…according to sources.”  It’s often difficult to verify the trustworthiness of these authorities. 

My Past Dalliance With a Little Bit of PC

Back when I was experimenting with Dr. Yasko’s methylation protocol, one of the few supplements I felt was truly helping was a phospholipid complex which included PC along with two other lipids:  Phosphotidylserine, and Phosphotidlyethanolmine.  It was called “PS Complex” or sometimes “PS/PS/PE/.”  It was actually one of the few Yasko supplements (a “short route” supplement) that I felt truly helped me.  Unfortunately I stopped taking it during a time early in 2015 when I was in a sort of semi-remission, not realizing that I may have reached that state of near-remission because of the supplements I was taking at that time, including PS Complex.  The dose of PC in Yasko’s PS Complex is much less than the standard dose of PC.   

Hello Again, Old Friend

With all of the above in mind, I decided it was time to try PC.  Then came the shocker:  it costs about $90 per bottle! 

Granted, there are less expensive brands on the market, but the consensus of Phoenix Rising users seemed to be that there are only a few brands of PC that are of truly good quality.  The brand my doctor recommended was one of them:  I took the liquid BodyBio version. 

My doctor told me to mix the liquid PC into a smoothie or other strong-flavored drink.  I don’t have the time or patience to make a smoothie every day, so I decided to take it straight.  It tastes like motor oil, but for some strange reason I enjoyed the taste.

My complaint about most ME/CFS supplements is, if they make a difference for me, the difference is often subtle. Sometimes, I am not entirely sure if any individual supplement, alone, is helping.  Often I continue to take a supplement anyway because (a) many other ME/CFS patients report that the supplement is beneficial, (b) the science says it should be beneficial based on my symptoms, and (c) my doctor recommends it. 

PC was not in this category. 

Beginning the next day, I began to experience very strong signs of a Herxheimer reaction and possibly over-methylation: Brain fog, muscle twitching, achy kidneys (nephritis), and stronger-than-normal inflammation.  Still I persisted with the PC for another five days, hoping (stupidly) that I could push through the Herx. 

On day six I stopped taking the PC, and the brain fog went away almost immediately.  However, the nephritis and muscle twitching still continue as of today, four days after halting the PC experiment.  Those two symptoms seem to be improving slightly with each day but still I’m astonished at how powerful the PC was.  My assumption is that the PC set into motion a detox event that my body is still struggling to clear. 

After experiencing such a strong reaction to PC, I started looking deeper into what other patients were reporting about PC on various forums.  (I probably should have done this before taking PC).   Based on forum posts, my rough estimation is that about two-thirds of the patients who’ve reported on their reaction to PC state they had strong negative reactions, many of them consistent with what I experienced.  But those who report positive effects seem very insistent that PC is a key to improvement

There’s one important thing I haven’t mentioned yet:  on day 3 of the PC experiment, among all of the negative reactions, I had a day of extremely clear headedness, almost bordering on a euphoric feeling.  Despite the nephritis, my energy was unusually high that day.  In fact, I had so much energy and mental clarity that I was awake most of the night as the energy burst continued.  Also, I've barely had any shortness of breath or post nasal drip since my first dose of PC.  Strange...

Going Forward


Based on all of the above, I believe there’s great potential in the therapeutic value of PC if I can hone in on the correct dose, correct titration, and perhaps the correct combination with other supplements for my body chemistry.  Maybe the solution is to go back to the more mellow “PS Complex” that I had success with in 2014 and 2015.  Of course, my natural inclination is to see how far I can take the benefits of PC, so I may experiment more with the pure PC liquid.  After all, I have a $90 bottle gathering dust.

2 comments:

  1. Gah! I wish I lived near you, I'd pay you for a sample of your bottle because I, too, wanted to try it, but react to so many things that I'm gun-shy about spending the money. Keep us posted!

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    1. Ah, I hear your frustration Elizabeth. If I get to the point where I decide I can't use by bottle of PC any more, I'll be happy to send it to you if you want.

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