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

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

Sunday, December 21, 2014

No More Methylation Experiments

I started  experimenting with Nutrigenomics and Amy Yasko's methylation protocol almost 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 doses 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 not 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 (getting rid of 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 for...one 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....

sugar.




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.

Thursday, October 23, 2014

Re-Blog: "Excellent Article Accurately Describes ME/CFS and Groundbreaking Research"

I try not to re-blog too often, but every once in a while another blogger's post strikes me as simply too good not to help spread around.  I thought that about Sue Jackson's recent post and the linked article from Stanford Medicine.  If you haven't read it yet, please take a look...

http://livewithcfs.blogspot.com/2014/10/excellent-article-accurately-describes.html

P.S.  Sue's first paragraph captures my feelings perfectly about the how the daily articles that circulate the ME/CFS universe can all seem like noise after a while, and how it's difficult to select those that are truly reporting something new or offering a unique perspective.  Well said.




Tuesday, October 21, 2014

Chronic sinusitis and candida overgrowth

I visited my other ME doctor yesterday, Dr. W.  By now my visits with Dr. W are very routine - I go every five months, which is the longest he will allow me to stay away between visits.  He says the licensing board won't allow him to prescribe maintenance-type medications to patients with longer intervals in between check-up visits.  So at this point my visits with Dr. W are simply necessities to maintain access to my prescriptions of T3, Testosterone, and Valacyclovir.

In terms of treatment plans, Dr. W is mostly out of ideas and I think I have plateaued under his care. (Pardon the use of "plateau" as a verb.)  So I am looking for another local specialist who will (1) maintain the treatments from Dr. W that did work, and (2) introduce some new ideas to push me through the plateau.

In the meantime, I discussed with Dr. W that I have been taking antibiotics for almost two months to deal with ongoing prostatitis.  We noted that my candida problem seems to have come back because of the antibiotics.  My tongue is again coated with a white film - more so than in recent months.
At the same time, Dr. W noticed that I was sniffling.  It's true that my sinuses have been running with post nasal drip for the last month -- a symptom I haven't dealt with since the first year of ME/CFS.

Dr. W mentioned that a Mayo Clinic study showed 96% of cases of chronic sinusitis are caused by candida overgrowth.   (That's a bit of an oversimplification of the study's results.)  This immediately made sense to me based on my recent resurgence of candida due to antibiotic use and the return of sinusitis at around the same time.

Dr. W's solution was to prescribe Fluconozole again.  I won't take the Fluconozole for at lest another month or two.  As I've written about here recently, there are other more important treatments I need to try first - like the Interferon/Prozac experiment.

Sunday, October 12, 2014

Dr. C Recommends New Treatment Plan

I had my latest appointment with my ME/CFS specialist, Dr. C, on Friday.  My appointments typically open with the nurse running through a questionnaire that's designed to gauge how my symptoms have changed since the last appointment.  I mentioned the prostatitis (as discussed in my prior 5 posts).

Treating Acute Inflammation

When Dr. C entered the room, he zeroed in on the prostatitis.  We reviewed that I've been taking a variety of antibiotics for over 45 days without any lasting improvement.  He said the prostatitis is probably, in his opinion, a result of ME/CFS -- not bacterial.  Specifically, the virus is attacking tissue in the prostate.  He says he has several other male patients who have these same symptoms and that urologists typically have no idea how to treat prostatitis when it is not bacterial.  The urologists are completely stumped by viral prostatitis.  (This is consistent with what I've read on the Prostatitis Foundation website).

Dr. C recommended that I try a new course of treatment involving a combination of Interferon shots and Prozac for one month.  The interferon shots would be self administered, from a sample vial that Dr. C is willing to give to me.  (Normally interferon is $600 per dose).  I would split the one dose that he is giving me into 3 or 4 smaller doses and take them each a week apart.

At the same time, I am supposed to take 4 weeks of Prozac (yes, the antidepressant), which Dr. C states has an off-label use as an anti-viral medication that works against the Cocksackie B-3 virus (according to researchers at UCLA and others).  Apparently Prozac inhibits the ability of viruses to bind with the enzyme that they need to replicate.  They are also using Prozac now for Hepatitis C treatment.

For reasons that Dr. C did not fully explain, he stated that neither Prozac or Interferon alone would inhibit viruses significantly, but in combination, they have a synergistic effect.  He states that he has personally observed these two drugs inhibiting viruses through his own experiments.  (The details of this weren't clear).

Dr. C only offered Interferon to me because of my prostatitis.  Dr. C stated that as soon as one stops taking Interferon, the virus returns to its former strength.  Thus it is not a good long-term solution to ME/CFS, especially given the prohibitive cost of doing "maintenance doses" of Interferon.  But when one is dealing with an acute symptom like prostatitis, it can sometimes be helpful to try Interferon for a short time to see if one can bring runaway inflammation under control.

I haven't fully decided if I will try the experiment, but I think that I probably will.  It would be very difficult for me to turn down this opportunity at a free sample.  The only problem is that I have too many key work responsibilities to handle in the month of October.  Dr. C warned that Interferon can make a person feel awful (more than usual for ME/CFS patients) for the first few days after a new dose.  Among other things, it causes chills and high fevers.  (I'm supposed to take high dose Advil an hour before each dose of Interferon to help counteract these side effects.)  I can't afford to be out of commission for at least another 2 to 3 weeks.  So I think I will postpone the experiment until November.

If and when I do try this treatment, Dr. C thinks the treatment has a reasonable shot at alleviating my prostatitis pain.  If it helps, I am supposed to report back and, if he has any more samples, he will give me a second dose. The mere possibility of relief is exciting to me right now.

General ME/CFS News From Dr. C

Hepatitis C Drugs

For years Dr. C has been awaiting the arrival of two antiviral drugs that were in development for Hepatitis C.  He had strong hopes that the antiviral properties of these drugs would also be effective against the enteroviruses that (he believes) cause ME/CFS.  One of those drugs finally hit the market recently and has been tried on a few patients who have both Hep C and ME/CFS.  The drug was successful in treating the Hep C but did nothing against those patients' ME/CFS.

The other of the two Hep C drugs in development is supposed to hit the market next month.  It will similarly be tried on patients who have ME/CFS and I'll know the results by the time of my next appointment in March.   

"Exciting Time"

Dr. C described this as an exciting time in ME/CFS research.  He said we are getting closer and closer to understanding the double strand virus that causes it (or so he believes).  "There is a way to get rid of this," Dr. C said, "we just don't know quite yet.  But we're getting there."

Samples Sent to the CDC

Three weeks ago, Dr. C finally sent stomach biopsy samples (about 30) to the CDC at the CDC's request.  He has been trying to convince the CDC to try to re-create his findings for years.  No word on how long it will take to get results from the CDC.  Just after he sent the samples, Dr. C received a letter from the CDC stating that the testing of his samples will be delayed because the CDC is suddenly being inundated with requests to do something about the Enterovirus D68 epidemic.  

But, Dr. C seemed more encouraged than discouraged by the delay caused by Enterovirus D68.  He says that this new Enterovirus D68 epidemic has brought more attention to enteroviruses in general than he's ever seen in his career.  He thinks this may funnel large amounts of interest, money, and resources into enterovirus research, which has been largely ignored up until now. 

Dr. C also explained that California Senator Barbara Boxer has recently taken an interest in Enterovirus research because of the cases of paralysis from Enterovirus D68 that occurred at Stanford Medical Center.  He is circulating a petition to be sent to Senator Boxer to encourage her to push the NIH toward further research into the chronic effects of enteroviruses.  (She has already written one letter to the NIH).  His concern is that interest in the acute affects of enteroviruses won't translate to interest in the chronic affects.  He wants to piggyback on the momentum created by the acute affects of D68 to generate interest and research into chronic enteroviral affects.    

What Strains of Enterovirus Cause ME/CFS?

With all the news coverage generated by Enterovirus D68 recently, I had been wondering whether Dr. C had ever identified, specifically, which enteroviruses he believes cause ME/CFS.  I couldn't believe I've never thought to ask him this before. 

His answer:  "Most commonly, the Cocksackie B viruses: B-3 and B-4.  Then probably Cocksackie 2,  Echovirus 6, Echovirus 7, Echovirus 9, and then much less: Echovirus 11."  He also said "there's a whole bunch of these guys we can't identify."  

(Interestingly, I have been tested for Cocksackie B twice.  One test was positive for B-3 but not B-4, and the other was positive for B-4 but not B-3.  This doesn't give me a lot of confidence in these tests.)