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

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

Monday, January 12, 2015

2014 - My Health in Review

2014 saw significant improvement for me again.  Based on an average of all 365 days of my daily health chart, my daily health rating went up almost four percentage points from 2013. (And 2013 was over 5 points higher than 2012).  So clearly I'm headed in the right direction.  Of course, this all assumes that my ratings system stays consistent over time, (which I think it has--I use certain benchmarks to ensure that--but it's hard to be 100% certain.)

On my daily health chart, besides giving myself a daily overall health rating, I keep track of what I call my "big three" symptoms, each on a scale of 1-10:  (1) flu-like inflammation & fatigue, (2) air hunger / shortness of breath, and (3) kidney-area flank pain.  In 2014, only 26 days out of 365 recorded any flank pain whatsoever (7%), and no entry for flank pain was over a 4 out of 10.  

So when I created a new spreadsheet for my 2015 health chart, I eliminated the "flank pain" column.  Ah, but ME/CFS giveth and taketh away.  I had to replace that column with a column for prostate pain, as that seems to be my new nemesis.  Consistent with what many other ME/CFS patients have written online, it often seems as if the pain and inflammation associated with this disease simply migrates around the body, camping out in one area for a few years before mysteriously moving onto another area.

My 2013 year-end review, posted last January, said that maybe 2014 would be the year that I started to cut back on supplements and see which ones I truly need.  Well, that hasn't happened yet, for various reasons, but I'm renewing that goal for 2015.  I'll be starting work with a new doctor soon, and she has promised to help fine-tune my supplement routine.  

As I wrote about a few weeks ago, I quit Dr. Yasko's program after almost two years of experimentation.  I'm going to continue with a few "short route" methylation supplements for the time being, but have stopped experimenting with vitamin b12 and "long route" supplements.  They simply haven't worked out no matter how slowly I titrate, or how small a dose, or how long I gave myself to push past "start-up reactions".  I mean, yes, I can take a molecule of B12 and be OK, but any substantial dose whatsoever brings on nerve inflammation and brain fog.  So I'm done experimenting.  It doesn't seem that I really need methylation to make improvements right now, so why keep messing with it?   

Overall, 2014 saw a large return of functionality for me, in ways that just weren't possible a year or two ago.  I still have a long way to go, and I realize that the trend could reverse at any time, but for now I'm just trying to enjoy every day in which I don't feel like I did a few years ago.   

Thursday, January 8, 2015

On Celebrex, Pain, and My ****

[This post contains some detailed descriptions dealing with male anatomy.  If that bothers you, don't read on.]

Just after Christmas, my prostate pain came back.  Truthfully, it never went away, but for most of December it had become mild.  Then it stoked back up for no clear reason.

(I'm trying not to let this blog turn into "My Prostate Blog," but it's what's on my mind lately.  I noticed that my click-rate falls when I blog about this topic, probably because half the population has trouble relating.  But I don't blog for clicks anyway.)

I returned to my urologist and told him that we had no other choice but to do "the test."  As I wrote in previous posts, the best way to know if one's prostatitis is bacterial or non-bacterial is to have a doctor "massage" the prostate (yes, by insertion of a finger through the anus), and then test the fluid that's forced out.  (The fluid isn't semen, but one component of it.) 

From September to November I took a constant string of antibiotics based on my urologist's mere guess that my problem was bacterial.  Many doctors think nothing of prescribing long term antibioticsthey're apparently not up on the latest research about the importance of healthy gut flora. I had reluctantly gone along with antibiotics through the end of November, but when the pain came back, I'd had enough of the indeterminacy.  

My urologist kept delaying testing the prostate fluid because he said the process of forcing it out is painful and sometimes makes prostatitis worse.  I said I had to know before taking any more antibiotics.  I like information, not guesswork.  PLUS, if the test comes back positive, we would know exactly what type of bacteria we're dealing with and what type of antibiotic to use.  

So we did the test.  It was painful, but not excruciating.  In fact, I felt much better for about 2 or 3 days after the test -- something many prostatitis patients experience.  Apparently, draining some of the fluid in the prostate often eases the pain.

To help with the pain until the test results come back, the doctor prescribed Celebrex.  I've never tried it before, but so far it seems to be helping quite a bit.  As far as I can tell, Celebrex has no euphoric affect like Vicodin, Percocet, or Ultram (which is good when I need to work), but seems to reduce the inflammation a lot.  So far, it's been a good week for pain.

Thursday, December 25, 2014

You know you have ME/CFS when...

The Christmas gift you are most excited about is a pair of battery-heated socks. 

Sunday, December 21, 2014

No More Methylation Experiments

I started experimenting with Nutrigenomics and Amy Yasko's methylation protocol almost two years ago, in March, 2013.  Prior to that, I had dabbled in a couple "simplified" methylation protocols without much success.  I knew that I would never get the idea of methylation protocols out of my system until I tried the full protocol.  I decided to go "full Yasko."

Now, almost two years later, I'm at a point where I'm ready to end the experimentation.  I wouldn't exactly call all the experiments a success, but I wouldn't call them failures either.  I was able to see some improvements implementing what Yasko calls "short cut" supplements, but not "long route" supplements.

Quick review:  Dr. Yasko theorizes that there are two chemical pathways by which the body's methylation cycle--an important detoxification system--works.  The short cut is a simpler chemical process that results in some detoxification.  The long route is more complicated, but results in more significant detoxification.  Dr. Yasko recommends that patients implement the short cut first, then concentrate on the long route.

(My full journey with methylation protocols can be read by clicking the "Nutrigenomics" tab in the right hand column.)

I don't think anybody could claim that I failed to put enough effort into the process.  I started with genetic testing through 23andMe, tested my hair and urine regularly, and worked with Yasko's web resources to tweak my supplement levels--all while trying to find the perfect combination of supplements to trigger the methylation cycle in just the right way.

I had some success with short cut supplements, including the use of a supplement called Phosphatidyl Serine Complex, or PS Complex, or PS/PC/PE. This supplement seemed to help reduce brain inflammation and reduce the dreaded "brain fog."  I still take this supplement and the other "short cut" supplements today.  I plan to continue taking them.

When it came to "long route" supplements, I could never quite get it right.  The cornerstone of long route supplements is vitamin B12.  Whenever I added Vitamin B12 to my regimen, I would experience increased levels of brain and nerve inflammation.  I would endure increased "brain fog" and hand, foot and leg numbness and uncoordination.  Each time this would occur, I would back off of B12 and start over, always going "low and slow" as Dr. Yasko recommends.  (This means starting with very low doses, and increasing very slowly).

My genetic results suggested that the "active" forms of B12 (methylcobalamin and adenosylcobolamin) would be problematic for me, so I concentrated on other forms.  But it seemed no matter how slowly I titrated and no matter what forms of B12 I used, I couldn't avoid feeling worse while taking B12.

I also don't think the problem was that I failed to stick with it long enough to move past initial start-up reactions.  After each failed attempt, I would take a new run at it.  For the most part, I would continue with each new B12 run for 3 to 4 months before backing off and trying again with a new combination.

So I've now come to the conclusion that, for unknown reasons, methylation protocols involving vitamin B12 simply aren't for me.  My body chemistry doesn't seem to want to have anything to do with vitamin B12, other than in the smallest doses found in regular multivitamins.

So I plan to stick with short cut supplements, but stop experimenting with long route supplements, at least for the foreseeable future.  I am changing doctors after the new year (moving on from Dr. W.), and my new doctor has experience guiding people through methylation protocols.  I won't rule out the possibility of returning to methylation protocols in the future, under the guidance of my new doctor.  But I think for now, we have other things to work on first.

Thursday, November 20, 2014

No Interferon for me

I wrote in my October 12th post that Dr. C offered to give me samples of Interferon injections, combined with Prozac, as a short-term (1 - 2 month) antiviral treatment.  He offered this because of my ongoing prostatitis pain, believing the pain to be related to viral inflammation.  Dr. C theorized that the Interferon/Prozac treatment would control the virus long enough for inflammation to die down.

Throughout most of October and November, I delayed any decision to start the treatment because the treatment apparently causes severe flu-like symptoms.  With my family and work obligations, I couldn't afford to be 100% out of commission with a flu.

In the mean time, my prostatitis started to dissipate.  Not completely (it still comes and goes), but it seems like it's trending in the right direction.  I haven't had any days lately where the pain of sitting is unbearable.

At the same time, I spoke to a fellow patient who emphasized how serious and strong of a treatment Interferon is.  It's not to be taken lightly.  Plus, I researched the side effects of Prozac and it sounds like it can turn someone into a zombie--no emotions.  I don't want to be a zombie for the holidays.  So my little risk/reward analysis told me it wasn't worth the risk of experimenting with Interferon/Prozac. But it's good to know that it's (hopefully) still an option if things get really bad again.

Tuesday, November 11, 2014

The backlash against gluten-free diets: why it's wrong

We've all seen it.  And it was predictable.  There's a heavy backlash against gluten-free dieters and it's only getting stronger.  The negativity toward gluten-free dieters can get downright nasty--they're portrayed as silly trend-followers who don't really understand nutritional science.  The backlash shows up on an almost daily basis in the form of punchlines on nighttime talk shows or snide comments from your friends and co-workers.

Here's why the backlash is just plain wrong...

First, let me establish that I don't have a dog in this fight.  I don't follow a gluten free diet per se.  I do eat a low-carb, Paleo-ish diet, which happens to mean I consume little gluten as compared to, say, someone on the standard american diet (SAD).  But if I want to eat a particular food that otherwise fits my diet and by chance contains gluten, I won't hesitate.

Second, let me say a few words about why there's a backlash.  It's two simple reasons:  There is a small minority of people who simply cannot shut up about their gluten-free diets.  They utterly fail to comprehend that there are few things less interesting than hearing about someone's specialized diet. These people invited the backlash and they unfortunately raise ire against everyone else who modestly adheres to the diet because it makes a difference in their day-to-day well-being.

My advice to these gluten-free megaphones: become as low-key about your gluten-freeness as you possibly can. If you're looking for something suitable on a restaurant menu, figure out a way to ask if it's gluten free without making it sound like you'll die if a speck of gluten crosses your lips - and preferably without even using the word "gluten."  I assure you that's quite possible.

The other reason is that most people (especially we Americans) just aren't comfortable not having a strong opinion about a topic that has entered the public consciousness. We're an opinionated people for better for worse--mostly worse.  We go to the grocery store and it seems like half the product labels scream "Gluten-Free" and we want to have something to say or tweet or status-update about that, damnit.  So we feel like we're somehow obligated to choose one side of the issue of the other; either we're a gluten-free champion or a bitter cynic.  Just once I'd like to meet someone who says, "You know, I don't really have an opinion on gluten.  I haven't read enough about it to form a knowledgeable point of view."

Nintey-five percent of the time, when a gluten cynic shares their viewpoint, it goes like this:  "Gluten is only a problem for people with Celiac's disease.  If you don't have Celiac's, gluten is not an issue."

Ah, if only nutritional science was so simple.  That's like saying, "If you don't have diabetes, you can eat as much sugar as you want without any health repercussions."

Here's the real deal.  Yes, Celiac's is a serious auto-immune disease and being gluten-free is imperative for people with that disease.  But for the rest of us, there's still a large and growing body of research that suggests that gluten is pro-inflammatory.  And inflammation has been implicated as a root cause of a range of diseases, from heart disease to Alzheimer's; from autism to migraines, and many more.

Even if you don't have any of those diseases, you simply won't feel as strong and as healthy as you otherwise would if you have excess inflammation.  The inflammation might be sub-clinical (you're hardly aware of it) but it could be keeping you from feeling more energetic, clear-headed, and healthy.

This past Summer, the results of a study were published that purported to cast doubt on whether non-Celiac's gluten sensitivity was 'a real thing.'  This of course became translated into attention-grabbing headlines proclaiming the whole gluten-free craze to be some sort of hoax.  Witness the utter glee behind these "neener-neener" headlines, which totally misrepresent the study they reference:  Google results for "gluten proven false."

First, the actual "study" that was referenced in these headlines, from Monash University in Australia, followed only 37 people, which is about as significant as as a wisp of dust.  The study tracked the subjects entire week!  The patience of those intrepid scientists is astonishing, isn't it?

But more importantly, even if you were to take the results of that one small study seriously, it only purports to cast doubt on a condition called "non-Celiac's gluten sensitivity."  Again, let's go back to the sugar analogy.  I don't think anybody doubts that refined sugars, in the large amounts consumed in the SAD, are bad for one's health.  It's not just about the immediate affects. Over a lifetime, consuming high amounts of sugar leads to obesity and diabetes, among other things.  This process plays out over a very long time, and does't require any kind of sugar "sensitivity" condition.

Studies suggest that the pro-inflammatory affect of gluten may operate in the same way.  Having looked at the studies showing the pro-inflammatory affects of gluten, it's really hard to discount them. (See, e.g. 1, 2, 3, 4, 5, )  Nobody has refuted any of these findings.  Certainly it doesn't take a degree in nutritional science to understand the difference between the myriad studies that observed the actual chemical process leading to inflammation from gluten, as compared to single study that followed a group of self-selecting gluten sensitive subject for a mere 7 days.

But of course we know which study made the headlines.

I'm not saying that anyone has proven with 100% certainty that gluten is categorically bad, in any amount, for 100% of the population.  Like most controversies regarding nutrition, A) there will never be enough evidence to remove all doubt, and B) the actual answer is probably highly nuanced, meaning it's possible that gluten has both benefits and detriments, and that the "right" amount depends on a number of variables, including difference in each individual's biochemistry. Again, think of sugar.

But if you're one of those bitter gluten cynics, you might want to ask yourself how sure you are that you're correct.  Even if you're not completely convinced by the gluten/inflammation connection, you'd have to admit that there's credible evidence in favor of it--a lot of it.  If you can refute the five studies I've linked above (a tiny sample), let's hear what you got.  Until then, do you really want to be rolling your eyes and making fun of people on an issue that is, at the very least, unresolved?  It's a legitimate debate and you ignore that at the risk of looking like a fool...

With the weight of the evidence pointing toward at least some real and significant problems associated with gluten consumption, it is likely you will be on the wrong side of history when all is said and done.  Might as well save yourself the backtracking now and quietly let each person explore for themselves whether reducing gluten intake is beneficial to them.  Let's all check back in 10 to 15 years and see what science says then.

I predict that, in the short term, the gluten backlash will get stronger until most gluten-free dieters are basically forced into the closet.  But the movement will quietly stick around until it gains more acceptance and, eventually, becomes more or less a permanent part of the conversation, just like....


Prostatitis - follow up

After my last post on prostatitis, I continued to finish out my course of antibiotics because my urologist was really insistent that I do.  I felt about 95% certain that the issue was not bacterial, but I was concerned that if it was, and if I stopped prematurely, I would be breeding some sort of antibiotic resistant super-bacteria.

So last Wednesday, after about 75 days of straight antibiotics, I finally finished the full course.  The problem: I was still having intermittent pain.  The pain now is infinitely more bearable than when it was at its worst.  In fact, if I had to live with my current pain level, I think I could do it with very little loss of quality of life.  But I was concerned that if, on the offhand chance, it was bacterial, and the few surviving bacteria went on to re-populate my prostate, I would have to start the whole trial over again with stronger antibiotics.

Alas, the urologist said that he thinks my pain now is just "residual inflammation" that will, hopefully, fade away with time.  But if it doesn't, and the pain comes back to the point where it is unbearable to sit, like before, then we agreed that we would finally test the actual fluid from the prostate (not just the urine) to get a definitive answer as to whether the issue is bacterial.  This what I wanted to do from the beginning but, for whatever reason, the doctor was very resistant to this.  (That's a whole other post).

So in the end, I feel good that there's a chance this pain will slowly subside (at least until the next episode), and that there's a plan in place if it doesn't.  I'm a planner,  More than anything, I just like knowing there's a plan.