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.

This guy nailed the Th1/Th2 dominance question...

I've never come across his blog before (because it's not specific to ME/CFS), but a blogger named Joseph Cohen of SelfHacked did a pretty darned masterful job of explaining the differences between Th1 dominance and Th2 dominance, and the different strategies that that can be used to counteract each.

When you think about it, it can be absolutely critical to identify which dominance you have because your whole treatment plan could potentially be counter-productive if you assume incorrectly.  I have always assumed I am Th2 dominant because (a) my understanding is that most ME/CFS patients are, and (2) Dr. C told me so.

As I started reading the article, I actually recognized aspects of myself in both profiles, Th1 and Th2. For instance, I do have arguably low T3 thyroid hormone despite otherwise normal thyroid tests.   But in the end, I decided I'm still pretty sure I'm still Th2 dominant.  The clincher is that low IgG subclass 3 is a hallmark of Th2 dominance, as is low Natural Killer Cell function.  That's me, exactly.

In any event, if you want to increase your understanding of this tricky concept, here's a great read: http://selfhacked.com/2014/06/16/supplements-foods-exercise-right-type-th1-vs-th2-dominance/

Allergist says my nasal passages are "incredibly inflamed."

I've been writing about my efforts to understand my shortness of breath (SOB) and post nasal drip (PND), which always wax and wane together.  I had recently come to the conclusion that both symptoms are caused by inflammatory cytokines.  This would essentially mean that there is nothing I can do about the SOB/PND except for the usual, marginally effective measures: paleo diet, immune modulating supplements and (sometimes) drugs, lifestyle management.  These of course never make the problem go away, they simply make the problem more manageable.

My pulmonologist recommended that I see an allergist as a last resort.  I made an appointment with the allergist but nearly cancelled after wondering: what's the point?  In the end, I decided to keep the appointment.  My reasoning was: if the allergist can identify even one environmental trigger (such as, for instance, dust), then there's one more piece of information I can use to help reduce incidents of runaway inflammation.  It certainly won't solve all my problems, but it would be one more small piece of the puzzle.

The allergist I visited yesterday (Dr. L) was very impressive.  You know that feeling when you meet with one of those rare doctors who seems equally as invested in your health mystery as you? That's a good feeling.  She's been practicing for less than five years.  Sometimes I find that the younger doctors, while less experienced, are the best because they finished medical school more recently.  Medical knowledge is evolving so rapidly that doctors who have been practicing more than about 15 years are often clueless about chronic complex conditions.  Plus, younger doctors haven't yet been worn down by years and years of listening to people complain (can you imagine?). They still have some empathy left to give.  I don't mean this to sound age-ist.  There are some wonderful older doctors too.

Dr. L spent about a half an hour with me.  She said my nasal passages were "incredibly inflamed." Her preliminary theory is that the inflammation (the cause of which is still to be determined) is producing mucous, which in turn drips down my throat and causes the SOB.  I'm not so sure about the mucous being the cause of the SOB (highly questionable), but at least she's the first doctor who has attempted to tie the two symptoms together.  Because, to me, they are clearly related.

I'm supposed to come back for a "scratch test" next week.  I hope this test will explain why I seem to react to my car.

Tip for FIR sauna users: always pre-heat

I continue to use my Far Infrared (FIR) Sauna 2-3 times per week.  I feel fairly confident it is helping detoxify my body. One thing I'm absolutely certain about:  it improves my sleep.  I always have a better night's sleep after a sauna session.

Yet there was a mystery I could never solve: why do I sometimes emerge from the sauna drenched in sweat and other times I barely sweat at all.  The times when I came out dripping with sweat were the times when I felt better and slept better afterwards.  Thus I felt it was important to figure out how to have the full-sweat experience every time.  Up until recently, my leading theory was that a low-sweat sauna session meant I was dehydrated.

I finally figured out recently that there is a correlation between the times I pre-heated the sauna and the times I sweated more in the sauna.  I vaguely recall that when I purchased the sauna, the manufacturer told me to heat it before getting inside.  As the years went by, when I didn't have the patience to pre-heat the sauna, I started getting inside as soon as I turned it on and then I would wait for it to heat up while I was inside.  I would add time to the end of my sauna session to make sure I still got a full half hour of maximum heat.

Just as they say frogs don't know they're being boiled alive if you start them in cold water and slowly increase the temperature (I wouldn't know, I've never cooked frog), the human body seems much less reactive to heat if you bring the temperature up slowly.  Based on my experience, it's critical to getting the most out of my FIR sauna to "shock the system" by getting into an already hot sauna.

Next iOS update will include nighttime amber-shift

[I originally posted this on Phoenix Rising, but I felt it was important enough to spread the word here as well...]

Apple device users: For those of us working on sleep hygiene, and for those who know that the blue glow of our devices shuts down melatonin production, the next iOS update, coming soon, will include a setting that shifts your screen from the usual bluish-white light to amber light at night. http://www.businessinsider.com/how-to-use-the-iphones-night-shift-mode-2016-1?amp

Up until now, there's only been the Lux app, which was strictly for jailbroken iPhones and iPads. I never wanted to jailbreak my devices so I settled for not using my devices at night. This is a much better solution. 

 

I now know what's causing my shortness of breath

I've been writing recently about my efforts to figure out what's causing my debilitating air hunger, which is always accompanied by post nasal drip (PND).  (Here and here.)  It comes and goes, but over the last two months or so, I've noticed that it has become more permanent.  I no longer get any days off -- it is there every day.  Now its only a question of severity.

I know now what's causing it: inflammatory cytokines.  I'm reasonably certain of that.

The pulmonologist found no problems with my lungs or heart.  I'm still pending an allergy evaluation (next week), but I doubt that will find anything.

Here's what I know:

Things that make it worse:

Exertion - Even walking now seems to trigger it.  A flight of stairs: definitely.

Coffee and other stimulants - The strange thing is, even decaffeinated coffee triggers it.  I believe that even the small amount of caffeine in decaf coffee is sufficient to make it worse.  Much worse actually.

My car - This is the one that doesn't quite fit with the others.  My first thought was, maybe I'm reacting to something in my car, particularly in the ventilation system.  Other times I've thought, maybe it's simply because every time I'm in my car, my presence there was preceded by exertion: gathering my things and walking to the car.  But I don't think that's the explanation.

Things that make it better:  

Nothing, except avoiding the things that make it worse.  I've tried Monolukast, inhalers, tea, mold and chemical avoidance, diet, anti-inflammatory drugs, Azelastine, and Flonase.  None of that makes a difference.

Therefore....

My conclusion is: This has to be inflammation triggered by cytokines.  We've ruled out nearly everything else.  Exertion and stimulants are two factors known to trigger an inflammatory response in people with ME/CFS. The car as a trigger is less easy to explain, but I feel there may be an environmental trigger to the inflammation as well.

I've been ill with ME/CFS for 4.5 years, generally the time frame when, as studies have shown, a person's cytokine profile changes.

Shortness of breath was a major symptom of my acute phase in 2011, but then it went away for the most part, for the next 3 years.  During that time, it was only sporadic, fairly rare, and not too severe when it did come.  It was not accompanied by PND like now.  I enjoyed a higher than average exertion tolerance compared to some other patients during that period.  Basically, I was able to do most day-to-day activities without fear of triggering a major crash.  (I dealt with a host of other problems, but hair-trigger SOB wasn't one of them.)  I wasn't like a normal person who could go running or play basketball, but I could climb a flight of stairs and feel OK generally.  That may be changing now.

Some people say that SOB in ME/CFS is not a matter of lung function or blood oxygen levels (my blood oxygen levels are fine) but rather the body's inability to use the oxygen efficiently.  I don't think that's the problem in my case because the SOB always gets better and worse in lock step with PND.  It makes more sense to me that inflammatory cytokines would be causing lung inflammation and at the same time, causing my sinuses to produce mucous.  The inefficient use of oxygen theory doesn't explain the PND.

About that Probiotics Cure....

There's an article being shared around the ME/CFS blogosphere about a patient who essentially cured herself by deciding, after some research, to put herself on a regimen of high dose probiotics (about 300 billion CFUs per day.)  It's pretty exciting if her results can be replicated.  Even if one other person can replicate these results in themselves, I will be fairly ecstatic.  Although, my excitement is tempered by the thought: someone must have tried this before, right?  If we've never heard about anyone else being cured this way, maybe it's because it hasn't worked for others.

This article came to my attention at an interesting time for me because, two weeks ago, I decided to start ramping up my intake of probiotics for two reasons:  (1) I continue to see a steady flow of new articles and research about the importance of gut flora to overall health, even from mainstream media (i.e. non-ME/CFS media), and (2) I read the blog of another ME/CFS patient who has had success taming candida with about 60 billion CFU's per day.

In the past, I had always found that I had trouble taking more than about 10 billion CFU's per day.  I would feel inflamed and slightly flu-ish.  But this time, using different brands and strains of probiotics that I selected more carefully, I have not had any trouble titrating up to 40 billion CFU's per day.  So far there's been no dramatic improvement, but I'm hopeful.  I don't think I will go as high as 300 billion like the author of the article, but I'm taking it day by day at this point.