You know you have ME/CFS when...

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

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.

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.

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.

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.

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.

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.)

My Prostatitis - Probably Not Bacterial After All

I went back to my urologist about two weeks ago and told him that the prostatitis was still there after a month of various antibiotics, just as bad as ever.  It tends to wax and wane, but mostly it just hangs around.  We reviewed the fact that the Bactrim didn't work, the Levaquin didn't work, and the Omnicef didn't work.  I suggested that it might not be a bacterial infection.  He said he's not convinced of that.  So as one final measure, he prescribed an additional month of Doxycycline.

Well, I'm about two weeks into that month-long course of Doxycycline, and the prostatitis is just as bad as ever.  I'm now convinced that this is not a bacterial issue.  Something tells me this has to be related to ME/CFS.  When my body-wide inflammation gets worse, i.e. a crash, the prostatitis gets worse.  I'm starting to accept that fact that this issue might not go away any time soon--that it might be another long-term symptom that I have to deal with as part of ME/CFS.

If that's what it is, I can accept that.  The worst part of having a new symptom is the not knowing what you're dealing with.  Once I get that figured out, I have something to research and focus treatment on.  It's the not knowing that's the worst.

The latest on my prostatitis

I wrote in my last post that the doctor switched me from Bactrim to Levaquin when the second course of Bactrim failed to bring the prostatitis under control.  I was prescribed a 10 day course of Levaquin.

On about the 8th day of the Levaquin treatment, my symptoms were still mostly unchanged.  I called the doctor again and he switched me to yet a third antibiotic: generic Omnicef (cefdinir).  Again, he prescribed a 10 day course.

By about the second day of Omnicef treatment, I began to feel some relief.  I'm about mid-day through the treatment now and I feel mostly normal "down there" -- maybe 95% of normal.  But, at this stage, I can tell that some symptoms are still hanging around at a low level.  I have the vague sense that if I stopped the antibiotics right now, the symptoms would come right back.

I am starting to realize based on my internet research and conversations with other patients that prostatitis can be very tricky and hard to kill.  Sometimes it takes a month or two of antibiotics.

The good news is that, if you don't count the prostatitis, my overall health continues to be fairly good, as it was throughout the summer.  My baseline health continues to rise at an almost imperceptibly slow rate.  If it simply topped off right now and never got any better, I would probably count my blessings.  My bigger concern would be relapse, so I am generally continuing with the pacing, supplements, and diet that (I think) got me here in the first place.

Update on my prostatitis

A lot has happened since I last wrote about this in mid-August.  My baseline health has actually been pretty good lately (for an ME patient), but this prostatitis has been preventing me from getting the full enjoyment out of it.

A few day after my last post, I made an appointment with my urologist.  As predicted, he wanted me to immediately go on antibiotics.  I argued.  I said that I'd read 90% of prostatitis cases are non-bacterial. He rolled his eyes and chuckled (not in a condescending way - we have a good relationship).  He said that while it's true that not all cases of prostatitis are bacterial, it's a lot more than 10%.  Based on the fact that antibiotics seemed to cure me last time (arguably) he recommended them again.  I protested.

The doctor's said, "let's compromise.  I'll write you a 'script and you hold onto it and only redeem it if you get worse."  I agreed this was a reasonable plan.  Then we agreed on a specific antibiotic: Bactrim.  Doxycycline didn't work for me last November and Cipro is apparently the devil (according to others) and I don't want to risk tendon damage.

My plan was to wait a week and see where I was after doing "all the right things" according to the urologist: no caffeine (I rarely have it anyway), hot baths, and anti-inflammatories.

I lasted two days.

It turned out to be the right call because 3 or 4 days after I started the Bactrim, I felt almost 100% better overnight.  If it was just the anti-inflammatory affects of the Bactrim (as opposed to the bacteria-killing effects) I would have expected the improvement to be gradual and linear.  Instead, it was PAIN, PAIN, PAIN...nothing.

So I dutifully took the Bactrim 2x/day for the full 10 days (also with probiotics twice a day, of course). After the 10th day I felt good...for a few days.  Then it came right back.

I went back to the urologist and he prescribed two more weeks of Bactrim.  I started back on them after a 3 or 4 day break, which gave me some concern.  Wouldn't the strongest bacteria have survived and replicated, I asked?  The urologist waived off this concern without explanation.

Once back on the Bactrim, my symptoms mostly disappeared for a couple more days before coming roaring back.  So now I'm still on the Bactrim and the symptoms are back.  By the way, when I say "symptoms" I'm referring to the fact that when I sit down I get the slight sensation that I've been impaled on a wrought iron spike.

So this time I called my doctor back (I don't need another $45 co-pay, thanks), and he switched me to Levaquin - which is in the same scary family of antibiotics as Cipro, called fluoroquinolones.  The problem (according to Dr. Google) is that the prostate is a very isolated organ that is not easily reached by many antibiotics. The antibiotics in the fluoroquinolones family have a unique ability to penetrate tissue and get places that other antibiotics cannot.  That's also what makes them so toxic.

*Sigh*.  So it all comes down to this once again: live with pain and risk a spreading infection or take a fairly toxic antibiotic and decimate my gut flora.  Not an easy choice but I'm going to take my chances with the Levaquin.

Prostatitis post, part 2

Every once in a while on this blog I write a post that, frankly, is more for my own benefit than anyone else's.  I still post publicly just in case anyone else can be helped by it. This is one of those posts.

Whenever I face a new or worsening symptom, or a possible co-morbid condition, like prostatitis, I like to make a list of all the things I suspect may have contributed to the onset of the symptoms.  That way, the next time the symptoms appear, I can refer back to the list and see if there are any similar circumstances.  I'm looking for factors other than ME/CFS, because there was obviously an additional trigger or triggers.  I've had ME/CFS for over three years but have only had two incidents of prostatitis during that time.

So here's the list of suspects.

1)  In preparation for the camping trip, and during and after the camping trip, I did a lot of packing and unpacking of the car and moving boxes and semi-heavy items.  What's interesting is, the two prior times that I got prostatitis (once in 2005 and once in 2013), was around the time I was moving residences and packing boxes.  Is there something about packing, lifting and moving that is causing protatitis?

2)  On a camping vacation last week, I drank both coffee (quite a bit) and alcohol (in small amounts), which I don't do regularly.  In fact, I do them rarely.  The Prostatitis Foundation website states that both coffee and alcohol can aggravate prostatitis.

3)  Another suspect: My tri-weekly injections of bioidentical Testosterone as an ME/CFS treatment.  Some internet sources say that testosterone levels, and in particular, DHT (testosterone's byproduct) are associated with prostatitis.  On the other hand, many more internet search results state that the supposed DHT/prostatitis connection has been debunked.  My urologist also told me back in 2013 that the testosterone injections were not related to prostatitis (and he is NOT the doctor who prescribed the injections, so I have no reason to distrust him.)

4) I did some very light yoga around the time the symptoms appeared, but I think the symptoms actually started a day or two beforehand.  I can't be sure...  This is one instance where my daily health chart failed me.  Because the symptoms started so gradually, I neglected to note them when they first started, so I don't know the exact date.

5)  Something unknown or unexpected like viral reactivation?

The Possible Connection Between Prostatitis and ME/CFS

The prostatitis that I wrote about in November and December seems to be back.  This is not a surprise. Prostatitis is inflammation in the prostate that can sometimes be caused by a bacterial infection, but is more often caused by general inflammation of the prostate.

My November-December episode of prostatitis wasn't the first and the urologist told me it probably wouldn't be the last.  He said that after one contracts prostatitis, it tends to slowly become a chronic condition.  It may be a lifelong companion.

The question in my mind has been: is this related to ME/CFS, or just another sign of getting older?  I believe it is probably related for several reasons.  First, I never had chronic prostatitis before ME/CFS.  Before, I had one bad episode of a urinary tract infection, and would occasionally get some mild symptoms similar to what I experience now--but nothing as severe as this new pain.  

I now believe those early, mild symptoms were warning signs.  I believe they were signs that the underlying cause of my ME/CFS (a weak immune system) had been building toward a tipping point for some time before I came down with ME/CFS. (More on why I believe that in a future post) 

As I researched prostatitis, I began to see many familiar themes from the ME/CFS community.  Prostatitis is normally a chronic condition of unknown origin.  It tends to baffle doctors.  Doctors (even urologists) often become frustrated with chronic prostatitis patients because they don't know how to solve the patients' problems. (Prostatitis Foundation).  Sound familiar?  

Prostatitis is essentially a disease of inflammation.  While a small percentage of acute prostatitis cases are caused by bacterial infection, most are caused by inflammation of unknown origin. (Prostatitis Foundation).  

Here's a list of the possible causes of prostatitis, from the Prostatitis Foundation website.  I've highlighted the areas of cross-over from ME/CFS:

• Bacterial infection,
• Auto-immune response or disordered immune response,
• Neuromuscular, tension or physical injury problem
• Additional possible causes:
• a uric acid disorder,
• prostate stones,
• a urethral stricture,
• a rare tumor,
• prostate cancer,
• benign prostatic hyperplasia (BPH, non-cancerous growth of the prostate),
• a food allergy,
• a yeast infestation,
• a specific yeast problem from the Genus Candida,
• or a virus. (Prostatitis Foundation)

Just as with ME/CFS, since the medical community is of relatively little help in dealing with chronic prostatitis, many sufferers turn to self help techniques.  Self help often includes dietary supplements and the exchange of information with other patients in online forums.  

And then there's this quote from the Prostatitis Foundation website:

There's growing interest in the idea that prostatitis may be caused by immune disorders or allergies, in which case treating the inflammation is the way to go. ... There are research trials underway with the drug Elmiron, which addresses auto-immunity and mast cell responses. And antibiotics themselves have anti-inflammatory benefits. (http://prostatitis.org/methods.html)

Then there is the Candida connection.  It seems both ME/CFS and prostatitis often go hand-in-hand with Candida overgrowth, which points back to immune dysfunction.

A significant number of men with chronic prostatitis have found relief ranging from a cure to welcome diminution of symptom severity after following an anti-candida regimen. .... 

It is uncertain whether a yeast overgrowth in the gut lowers general body resistance by attacking the immune system, thereby allowing dormant bacteria in the prostate to re-activate (proven science: [Candida] toxins disarm elements of the immune system), or whether the effects on the immune system result in non-bacterial inflammation to the prostate tissue (and often the sinuses as well - another poorly perfused part of the body), or indeed whether the organism actually infects the prostate tissue directly....

Here follows a shortened list of the associated symptoms which typically accompany a CA-induced prostatitis ... painful lymph nodes ... unexplained fatigue ... always catching colds and flus ... mental confusion, fogginess ... cold hands and feet ... (http://prostatitis.org/fungus.html)

All this gives rise to the possibility in my mind that prostatitis is yet another related or "co-morbid condition" with ME/CFS.  The good news is that, before ME/CFS, I would have probably visited a couple of doctors, who would probably shrug and fail to offer much help.  At that point I would have simply accepted that this condition is just a new fact of life.  Now, I'm much more motivated and have the tools and general understanding of the inflammatory conditions in my body to actually do something about it.

Just like with ME/CFS in general, I'm going to start trying various treatments (both self-help and through doctors) until I find something that works best for me.  But I know now not to rely solely on my doctors.  I know to take responsibility for my own care and to research and understand the condition as well as I can... and most importantly, to be a partner with my doctors, not just a blind follower.  I'm optimistic that, while I may not find a cure, I'll find ways to gain at least some measure of control over the symptoms.  In the end, that's all I can ask for.


End Note: For those thinking that I may have prostate cancer, I have had a couple of digital rectal exams [DRE's] in the last couple of years, and all were unremarkable.  But, from what I've read, one must always rule out the possibility of prostate cancer when he has symptoms of prostatitis.

Minor Differences in Generic Rx's Can Have Major Effects

About a month ago, I mysteriously started experiencing serious stomach pain.  I haven't had significant gut issues since my acute phase, before I changed my diet.  This new pain got to the point where it became unbearable and I couldn't think of much else.

Again, I turned to my daily health chart to see if I could find answers.  The only significant change I noticed near the time of the onset of the stomach pains (four days earlier) was that I had switched brands of generic Valacyclovir.  For more than a year prior, every time I went to the pharmacy, they would dispense a particular generic brand.  This one time, all of a sudden, the bottle looked different and I was given a different brand.  I didn't think anything of it.  I figured all the generic brands were pretty much the same....until 10 days later when I noticed a possible connection on my health chart.

To test whether the new brand was actually responsible for the pain, I took a "holiday" from Valcyclovir for a few days.  The stomach pains subsided.  As soon as I resumed Valacyclovir, the pains returned.

For the past few months, I had been meaning to change pharmacies, so this was the motivation I needed to make it happen.  I switched from a national chain to a local compounding pharmacy.  I told the new pharmacist about my experiences with the different generic brands.  He said it's fairly common. Obviously, he said, the active ingredients in the generic brands are the same, but each generic brand contains different "fillers."

My refill with the new pharmacy was with a third generic brand--one I'd never tried before.  I've been taking the new brand for about a week and it hasn't caused any trouble.  Since that experience, I've searched the internet for further information on this issue, and it appears to be a fairly common problem, not only among brands of Valacyclovir but any type of drug with multiple generic options. The lesson I learned is that, just because a generic drug doesn't agree with me, doesn't mean that drug is off limits.  I may be reacting to an inactive ingredient.  I suppose the only way to find out is to try another generic brand ... or Google it!

Did we just take a HUGE step toward a unified model of ME/CFS?

It seems as if every day there's an article discussing new research findings and treatment theories in the ME/CFS blogosphere.  In the first year or two of my illness, these articles excited me.  I read every single article and blog post about new theories and treatments.

Then, after a while, I started to realize that most often nothing becomes of these promising leads.  We never hear about them again.  In the past year, I reverted to simply skimming the headlines and surmising the gist of most articles.  I look for anything that sounds like a true breakthrough...or anything that "connects the dots" with prior research.

After this year's IACFS Conference, I felt conflicted again.  All the information I'd absorbed sounded so promising, and yet, we still had dozens of different theories, each of which only seemed to explain a portion of the disease.  There was no serious attempt yet to synthesize the various research findings into a unified model.

Here's what I wrote after the IACFS Conference:

The next big breakthrough in ME/CFS research. ... will be the first. 

As sobering as that is, we can't point to any one finding over the last 30 or 40 years that truly qualifies as a "breakthrough."  I'm referring to a breakthrough on the order of the XMRV discovery....had it turned out to be correct.   

We have nothing like that.  So when I read accounts of the IACFS conference, or the daily articles that make the rounds in our blogosphere, I have mixed feelings.  A few dozen dedicated researchers are working on their pet theories and all seemingly churning out important findings.  It all sounds positive...we are surely making "progress"!  Right?

But it raises the question: Is one of the researchers correct, and the others wrong?  I think, almost certainly not. There are too many confirmed physiological abnormalities found in ME/CFS patients that are, by now, beyond debate.  In the immune system alone, there is a constellation of problems, and that's just one part of the disease.  We know with absolute certainty we're dealing with a complex multi-system disorder. And so each of these dedicated ME/CFS researchers is probably focusing on what will turn out to be but a small piece of the puzzle. 

When a true breakthrough finally occurs, it will look like one of two things:  Ideally someone will suddenly discovery the etiological cause--the one event that sets off the long chain of subsequent physical derangements.  Then we'd have a true focus for treatment research. 

But barring such a "homerun" discovery, true breakthroughs will begin to occur when someone with a mind toward the "big picture" starts making connections between the various derangements.... and proving them.  Someone has to start linking these findings in a causal chain so that we can begin to create a comprehensive model of this impossibly complex disease. 

It appears that one of our beloved ME/CFS researchers is finally starting to do just that--to look at the big picture and develop a unified theory.  If you haven't yet read Cort Johnson's article summarizing Dr. Lucinda Bateman's recent pronouncement, you really should.  The one-sentence version is that Dr. Bateman has developed the beginnings of a unified theory, where ME/CFS starts with inflammation in the limbic part of the brain.

It's true that others have proposed general theories before about how everything fits together, but I don't believe it's been done with this level of clarity and confidence -- and by someone who is respected as a leader in ME/CFS research.

I've been a strong proponent on this blog that a unified theory will start and end in the brain--the hypothalamus specifically. (Examples 1, 2)  That of course isn't my theory, but it's the one that always made the most sense to me because it is the only one that could explain all the myriad symptoms and derangements we experience.  Bateman is now saying it's not just the hypothalamus but it's inflammation in the entire lower portion of the brain.  More importantly, she's gone beyond the stage of idle speculation and has actually coalesced the research findings of her colleagues into a well thought-out hypothesis that makes a lot of sense.

What We Need to See Next

Obviously we're still a very long way from solving this disease, but here are a few things I'd like to see happen to push us closer to that goal.

1.  Naturally, the hypothesis needs to be tested... extensively.  This will be a long and expensive process (maybe a decade or more?) but I truly believe that it will be confirmed, if not refined a little in the process.  

2.   The theory needs to be expanded to explain some of the other derangements we see in ME/CFS patients, especially in the immune system.  Dr. Bateman speaks of auto-immunity (overactive immune response).  But what about other aspects of the immune system that are under-active in ME/CFS patients (specifically Natural Killer Cells, and usually, one or more IgG subclasses)?  Any unified model must explain immune deficiencies too.

3.  Where do pro-inflammatory cytokine storms fit?  Are they upstream or downstream of the brain inflammation?  Do the pro-inflammatotry cytokines cause the brain inflammation, or does the brain inflammation lead to immune dysfunction and, thus, cytokine storms?

4.  Of course, it would help if someone could actually explain the external cause of ME/CFS, but I suspect we already know about as much as we'll ever know.  It's generally accepted that there are probably many doorways into ME/CFS: viral, bacterial, stress, traumatic injury, genetics, exposure to environmental toxins.  I think it will be a very long time before we're able to be more specific than that.

5.  Now that someone has developed a credible unified theory that actually makes a lot of sense (in my opinion), and after it's been tested, we've got to ensure widespread support for it from other ME/CFS experts.  We've got to somehow get all or most of these experts pulling in the same direction.  That step would require the concerted effort of an organization like IOM, or it would require one of the big-name researchers like Bateman to become a leader and rally the others behind her (if that's even possible).  This would likely be a very long process too.

6.  After general acceptance among ME/CFS researchers, this new model would expand and gain general acceptance among ME/CFS clinicians, and from there, spread to the greater medical community in general.  True, acceptance in the general medical community seems like a pipe dream now, but if there were a complete model that explained all of our symptoms and could be tested and confirmed, it would gain traction fast.  

(Remember the trajectory that the XMRV theory was on?  Imagine how quickly that knowledge would have spread among the general medical community if the findings had been confirmed.  They'd already be teaching it in medical school).

7.  I believe that only after there's a model of ME/CFS that truly gains acceptance in the general medical community will we ever see the major drug companies take a serious look at this disease and begin to develop drugs, in earnest, specifically for ME/CFS.   

Wild Speculation About the Future

When you consider all those steps, it can be a little discouraging.  Even if Bateman is 100% correct, it could still take as long as 20 to 30 years or more for these steps to occur.  Then again, sometimes progress doesn't occur in a linear fashion.  Progress sometimes builds momentum exponentially.  

Looking at the epidemiology of other diseases, often when one key connection is made, others are made very rapidly afterwards.  Imagine what would have happened had XMRV been confirmed.  Research money would have started pouring into our bare coffers.  Drug companies would have been racing to beat each other to the market with an XMRV anti-viral.  Our small circle of ME/CFS researchers would have likely expanded as other virologists and epidemiologists all over the world would have turned their attention to ME/CFS.  Progress would have accelerated very quickly for us. 

At any moment, we're just one breakthrough away from a rapid acceleration of progress.  Could Bateman's theory be the breakthrough?  Probably not because it's not a research finding...yet.  So far it's just a hypothesis.  But if and when it is tested, I believe it has the best chance yet of any hypothesis we've seen of being the breakthrough.

For now I'm simply glad that someone in a lab coat is finally looking beyond their own pet theory and trying to make sense of what their peers are doing too.  More of that, please!

3 Year Anniversary - Looking Back

Somehow, almost an entire month has passed since my last post.  I'm not sure how that happened.  In the meantime, my 3-year ME/CFS anniversary  has passed.  These so-called "sickiversaries" make me reflect on how I've progressed and changed since first getting ME/CFS.

As I wrote last year, I dreaded the 3-year anniversary because researchers have noticed fundamental differences in the physiology of patients who have been ill with ME/CFS for greater than 3 years.  For example, patients of 3+ years typically have cytokine profiles that are different from newer patients.  I've also read that if a patient has any chance of recovery, they will usually recover within the first 3 years.  After that, the chances of recovery fall significantly.  All this suggests that something occurs at about the 3-year mark that changes the course of ME/CFS for the worse.

For now, however, I am not too worried about having passed the 3 year mark because I have been doing relatively well lately.  It's always easy to brush off these types of concerns when you're doing well, isn't it?  Over the last 2 or 3 months I have been doing well enough that at times I've even wondered, "Am I in remission?"

The answer to that question is an emphatic NO.  Every time that question arose in my head, symptoms would flare and I would be reminded that I am still quite ill in many ways.  But it's remarkable that the question even enters my head sometimes.  During my first and second year, I would have never entertained that thought, even for a second.

As regular readers may know, I keep a daily health chart, and I calculate an average of my overall daily rating at the end of each month.  When I charted my monthly health averages over the past 3 years I saw a very slow and steady rise.  The increase was so slow and steady that it was imperceptible from month to month as I lived through it.  I could only see it after graphing it visually.  But I know that it's real (not simply a shift in my rating sensitivity) when I think about certain activities that I was unable to do two years ago and that I am able to do now.  For instance, I am able to perform maintenance work around the house and garden without much, if any, consequence.

Yet, there are still many signs that I am fundamentally ill, particularly in my immune system:  My natrual killer cell activity is still pathetically low.  My IgG subclass 3 is still low, out of range.  I still have ongoing Candida overgrowth, another sign of a weak immune system.  And I still suffer frequent sore throats.  When these sore throats arise, my tongue swells so badly that it becomes difficult to talk. I still experience shortness of breath on a regular basis, although that symptom has diminished over time.

There are many other symptoms that I still experience regularly--too many to mention here.

Post exertional malaise (PEM) remains a problem, but the threshold of what I can do before I trigger PEM has risen over time.  During my first year, PEM could be triggered simply by standing for too long, or by walking a few hundred yards.  Now I can do most activities of normal day-to-day life without triggering PEM.  However, if I venture into cardiovascular exercise, I will crash with PEM.  (I was reminded of this just last week when I got cocky and decided that I was well enough to handle a bike ride.  Three days later I crashed badly with that unmistakable PEM feeling.  Luckily, the crash only lasted two days.)

So my challenge now is to maintain my current level of health and possibly even give myself a chance to improve further.  The main idea is not to do anything that will make me regress.  That means, I must fight the urge when I'm having a good day to go crazy and do everything, overwork myself.  I have to always remember that blood tests and my own body are telling me that I'm not "OK" even though I may feel OK sometimes.

Some readers will of course want to know how I improved.  This is a really difficult question to answer, and the honest answer is that I don't really know.  I will try to formulate a theory in future posts, but my responses will be educated guesses at best, and I don't think my improvement was attributable to any one treatment.

I continue to believe that improving with ME/CFS is a combination of luck and, sometimes, putting dozens or hundreds of puzzle pieces into place before anything becomes clear.  This disease is simply too complex and multi-factorial to expect much of a difference from one or two treatments alone.  But then again, I've known many patients who have gone to much greater lengths than me to find improvement, and they only got worse for their efforts.

My suspicion is that improvement is often a matter of luck: perhaps it's stumbling on the right combination of treatments, in the right order, to match each of our own unique etiologies.  And even then, sometimes improvements are fleeting.  It's also clear that what works for one patient, usually doesn't work for the next.  We are clearly divisible into subclasses, in my opinion.  Such is the frustrating nature of our disease.

Update on my Adderall use: a big help...used cautiously

I rarely do this, but I am recycling a post I made on a forum for this blog post because I think it's useful enough to share with a wider audience.  This post was in response to a question by another poster who asked if anyone was doing a self-help version of the K-PAX trial.  

A supplement manufacturer, KPAX, is or was conducting an ME/CFS drug trial in which they combined the stimulant Ritalin (a drug typically used to treat ADD and ADHD) with KPAX's own immune stimulating supplement.  Some well-known ME/CFS researchers have theorized that the combination of Ritalin and certain other mitochondrial-support supplements (which are found in KPAX's supplement) may have a "synergistic effect," boosting the immune system and mitochondrial energy.

My take on this:

I have been and continue to be unwittingly doing a similar protocol. I happen to be taking all the ingredients in the KPAX Immune Support supplement independently (but not packaged exactly as KPAX does). Instead of Ritalin, I'm using Adderall. My understanding is Ritalin and Adderall are closely related and used for the same purpose, but I don't know if they would be considered interchangeable for the "synergistic" purposes of the KPAX trial, so take this with a grain of salt. 

Also, I don't take the Adderall every day...maybe 2 or 3 times a week. At first, the point of the Adderall for me was to cut through the brain fog. Then I noticed that every time I took it, I had a way above-baseline day. But I figured that was because Adderall is a stimulant and is therefore making me feel* like I have more energy without actually improving my health.  

Then after a while I started to noticed that if I was semi-crashed, or had inflammation, or shortness of breath, or flank pain, or sore throat or any of the many other symptoms I get with ME/CFS, they would go away or be greatly reduced when I took the Adderall on top of the other mitochondrial supplements (which I take every day.) I also noticed that the health & energy improvement usually continued the next day, even after the Adderall had long since worn off.  

So now I'm starting to suspect that the Adderall may be doing more than just giving me the illusion of feeling better. I think it may actually be making me better. I am, of course, proceeding very cautiously but I love having Adderall in my bag of tricks. Basically any time I need or want to have a good day, I can have one instantly. The temptation is strong to just take Adderall every day, but I'm not ready to go that far.

To be clear, I am not advocating the use of Adderall, I'm just relating my own experiences recently.  Adderall is still a heavily controlled substance and the risk of addiction is apparently strong with this drug.  Other patients have also expressed the concern over potential adrenal burnout if an ME/CFS patient become too reliant on Adderall.

I should also point out that I've never tried Adderall when I'm in a truly deep, serious crash. Instinct tells me that would not be a good idea.  Also, Adderall has been useless to me against the types of crashes that are due to me catching a cold or another bug, but it has been somewhat effective when I get a flare-up of regular ME/CFS symptoms.

New Blood Test Results: A Mixed Bag

I had my latest appointment with my other ME/CFS doctor yesterday, Dr. W.  My appointments with Dr. W tend to be fairly routine at this point: we check my blood test results, re-fill prescriptions as needed and sometimes tweak my supplements and Rx dosages.  The most interesting aspect is receiving my blood test results and following the progress of treatments with actual data.

This time, we tested some key immune markers that hadn't been tested in nearly two years, namely immunoglobulin (IgG) subclasses, and (a more indirect indication of immune health) candida antibodies.

As I've written about before, over the last two years I have gradually increased my "baseline" health.  The improvements have been moderate, but certainly noticeable.  It's definitely something more than just "getting used to it," although that is a factor too.  The improvements have been nothing world-beating, but then again, I would consider it a victory even if I managed to hold steady and not slide backwards.  I read about so many of my fellow patients who describe a long, slow slide backwards into poorer and poorer health, and I think that any patient who can at least maintain their baseline should be relatively happy.  A slight improvement, like mine, is something to be celebrated.

At the same time, I've been looking for some indication in my blood test results to explain why I've been feeling a little better lately.  I continue to be disappointed.

IgG Subclasses

I first had my IgG subclasses tested back in April, 2012--over two years ago.  While subclasses 1, 2 and 4 were in the normal ranges, subclass 3 was low (12, with a reference range of 22-178 mg/dL). Now two years later I had it tested again, after years of immune modulating supplements, probiotics, optimal Vitamin D3 levels, and a number of other treatments designed to boost or modulate my immune system, like Equilibrant, ImmunoStim, and others.  My new results: 12 again.

Dr. W states that my three other IgG subclasses are also low, although technically not out of range.  In each case, the numbers are in the lower third of the reference range, but this is nothing that would strike me as alarming.  Those numbers also remained about the same from 2 years ago.

Candida Antibodies

My Candida antibodies have actually gone back up (that's bad) after going down for a while...  While candida isn't a direct measure of immune health, candida overgrowth is a solid indicator of a weak immune system.  Candida overgrowth simply doesn't occur in people with healthy immune systems.

I used to test my Candida antibodies much more frequently, but my doctor stopped once it became clear that I had a good anti-Candida diet in place and I was also taking daily oral Nystanin for a while.  Here are my results from late 2011 and early 2012, alongside my recent results in bold.  The test measures three types of antibodies for a complete picture (IgG, IgA, and IgM).  Anything 1.0 or over is considered "out of range" on the high side:

              Dec. '11     Feb. '12    Apr. '12  May, '14

IgG         1.3            1.2            1.2         1.7

IgA          3.7            3.3            2.6         3.1

IgM         1.4            1.3            1.2         1.0

I supposed I could view these results either positively or negatively. On the one hand, I had been taking Nystatin at the time of the middle two tests (Feb and Apr. 2012).  Now, I haven't taken Nystatin for over a year and yet two of the three antibody types (IgA and IgM) are lower than the average of the prior three tests. Could this mean that all my diet and immune modulating work has helped?

On the other hand, IgG antibodies for Candida are higher than they've ever been, including when I was in my acute phase.  IgG and IgM antibodies, I believe, are found in the blood. You don't want to see those numbers go up because that could mean candida is becoming systemic. Candida overgrowth in the gut is one thing, but real problems begin when it becomes systemic and enters the blood stream in significant amounts.  It is not overly encouraging that IgM antibodies continue to drop, as those antibodies are usually most present in an early infection and one would expect them to wane as a long-term infection continues.  (Source).

I will be trying a month-long course of Diflucan to try to stop the Candida.  Unlike Nystatin, Diflucan can actually clear candida from the blood, not just the digestive tract. The downside is that it is harsh on the liver and must be used sparingly and under close medical supervision.

These results are just a little frustrating because I have been pretty damned disciplined about my diet and taking probiotics.  I would have expected better results.  There's not much else I can do (Diflucan is not a permanent solution), and feeling like you don't have any control over a bad situation is the worst feeling of all.  (I know, "welcome to ME/CFS," right?)

                                                                      Other Results

While not exactly related to immune function, I was shocked that my glucose tested high at 102 (range 65-99).  I was fasting on the morning of the test, and I have been a saint about sticking to my Paleo diet.  Genetically I tend to have high blood sugar, but again, I don't know what else I can do to control this.  I know there are blood sugar lowering medicines, but I don't want to add another pharmaceutical. 

Blood ammonia levels were also high 50 umol/L (normal range < or = 47).  High ammonia levels is a problem according to Dr. Yasko and her methylation protocol.  Now I have to take a couple steps back in that protocol as well. 

My Thoughts

It's not that I haven't seen any progress in these or previous blood test results.  Results like vitamin D3, thyroid, and testosterone levels have been brought back to close-to-optimal levels.  And perhaps this explains my slight improvement.  But honestly, I won't be happy unless/until I see improvement in my immune system.  Like many, I believe that immune dysfunction is at the heart of ME/CFS.  

While I know better, sometimes I had allowed myself to imagine that these slight improvements meant I would slowly climb out of this hole and get better and not have to worry about if I'll be able to play with my daughters and go on vacations and continue to work, etc.  

As Dr. W says, once you have Candida overgrowth, it is a life-long battle.  "It's a nasty, lifelong companion" he always says.  The same may be true for my ME/CFS in general.  In the best circumstances, you can manage it and hopefully stave off a backward slide and maybe even improve some, but I'm not sure that actually correcting one's immune system to the point of being "cured" is in the cards.  

How do we reconcile that with those occasional articles that claim a certain percentage of ME/CFS patients "recover?"  (Example)  I think the answer is that the surveys that produce those results have different ideas of what it means to "recover" than I do.  Probably many of them would already consider me "recovered" because I am more functional than average ME/CFS patient.  I can do things.  

But I certainly don't consider myself recovered, or even close to it.  So that's the rub: a realistic goal for me is to seek to be as healthy as I possibly can, but not to have expectations of ever being able to be carefree about my health again.  The daily frustrations and unpredictability of this disease will always be there in one sense or another.  The threat of a major relapse will perpetually be my shadow.  My task is to carve out as happy of a life as I can within those parameters.  

The "realities" that I'm writing about here are not new to me.  I've known them for a long time and have probably written about them before in this blog.  But I find that I sometimes need to reset my expectations.  My blog is called Quixotic because I have a tendency to stay optimistic even in the face of information that tells me I shouldn't be.  That's fine, but my challenge is to keep that spirit while at the same time understanding the situation accurately on an intellectual level.  With ME/CFS, and many other diseases no doubt, there's so often a conflict between the spirit and the intellect.  True peace of mind comes when we find a way to balance the two.

Book Review: Feel Good Nutrigenomics

I've added this book review to my ongoing list of ME/CFS-related book reviews.  For the full book review page,click here.

I recently finished Dr. Amy Yasko's latest book Feel Good Nutrigenomics.  It was the second book I've read by Dr. Yasko, the other being Autism: Pathways to Recovery.

If you've ever known a true scientist, you know they often struggle to explain their expertise to lay people.  Dr. Yasko doesn't seem to have that problem.  At this point, she's sitting on at least a decade of experience in explaining nutrigenomics and the "methylation cycle" to lay people.  With this book, we see the evolution of Dr. Yasko's theories and her educational style.  She is becoming more adept at simplifying this subject with each passing year.  The improvement is noticeable over Pathways to Recovery, which was published in 2004.

In Feel Good Nutrigenomics (FGN), Dr. Yasko makes her strongest case yet that "multifactorial" diseases (like Autism, ME/CFS, Parkinsons, etc.) can be attributed, in part, to faulty gene expression. She makes an equally strong case that it is possible to manipulate these genes into expressing themselves 'correctly' again, thus regaining health.  This is done by using specific, targeted supplements and diet based on one's genetic profile.

The problem with FGN is that it only addresses the "what" and "why" of nutrigenomics, not the all-important "how."  In that sense, it's a regression from Pathways to Recovery.  It's almost as if FGN was meant to be the first in a two part series, but there's no mention of another part.  So the book leaves the reader frustrated and wanting more.  Dr. Yasko gets the reader "charged up" to use her program, and then fails to give so much as a hint as to what the program actually is.  If she intended to leave the "how's" of nutrigenomics out of the book, she should have at least briefly offered the reader a guideline for further reading.  The book lacks a single sentence addressing the obvious question: "So where do I start?"

For those that have read Pathways to Recovery or some of Yasko's other writings, it's interesting to note the evolution of Dr. Yasko's theories.  For instance, the book contains virtually no reference to the role of RNA in the methylation cycle, or to Dr. Yasko's RNA supplements.  RNA and RNA supplements were a huge aspect of Dr. Yasko's protocol as of Pathways to Recovery.  It makes me wonder if she has discovered something that led her to quietly de-emphasize that aspect of her protocol.   

Overall, Feel Good Nutrigenomics would be great for anyone who can't decide if methylation protocols are worth pursuing.  But the problem is that most people who have gone as far as purchasing and reading a book on nutrigenomics probably don't need further convincing.  They need guidance on how to do it.  FGN does nothing for those who want to understand the protocol itself.  Ultimately, the promise of a "roadmap" never materializes, rather, the reader is left with a vague sense that a roadmap exists... somewhere.

I still think Dr. Yasko is a brilliant scientist and that her motivations are in the right place.  She is at the forefront of a very young science that will continue to increase in importance and popularity throughout all of our lifetimes.  Moreover, she seems to be a good person. To her credit, she addresses, head on, those who may have concerns about her motivations and financial incentives, in the last chapter.  I respect her for that, and I think she handled the situation well.  I believe her.

Here's hoping Dr. Yasko's next book is like FGN in that if further simplifies topics from her past writings, but that it actually covers the "how" of her methylation protocol.  Right now, her protocol is spread out across several of her books and literally thousands of posts on her online forum.  This needs to be consolidated, updated, and further simplified in one place.  (★½)

Trying to pinpoint the cause of my shortness of breath

My bad shortness of breath (SOB) continues and I'm really struggling to pinpoint the cause.  It has been going on for over a week, so this is something I clearly should pay more attention to.  Maybe this is one of those blog posts that falls under the category of "thinking out loud," but I also want to write my theories down so that next time I have severe SOB I can refer back to this list and see if any of these possible causes were present again.  If any readers experience SOB and you have any theories or guesses, I would love to read them in the comments.

Here are my guesses:

1) seasonal allergies or poor air quality accompanying Santa Ana wind conditions,

2) caught a respiratory bug, 

3) candida die off effect from taking Candidex recently, 

4) related to stopping taking pycnogenol two days before SOB started, 

5) recent increased intake of caffeine (mostly from black tea, but some coffee too)

[5/7/14 update:  It's becoming more likely that I caught a bug.  I've had sniffles for the same amount of time as the shortness of breath.  Both are lingering.  They wax and wane together].

Two examples of how ME/CFS has become my "new normal"

I rate my health on a daily basis, and then average those numbers at the end of each month to track my progress toward healing.  Generally the trend has been upward over the last two years, although the progress has been uneven and month-over-month improvements have been minuscule.  Slowly, those minuscule improvements have accumulated into more significant improvements.

The challenge in tracking health is to make sure that my reference point remains the same and that I'm not simply getting more used to life with ME/CFS.  As I've written about before, I try to keep objective measures in place to make sure that doesn't happen.  Even still, there were two recent reminders that, while I have improvement with treatment, I have also simply become more accustomed to being ill.

1)  Yesterday I went to the local "lab" to have blood drawn.  When the nurse checked my pulse, my resting heart rate was 77 bpm.  The nurse asked if I had  run or jogged to the lab.  I said no, and reminded her that I had already been sitting for 10 minutes. She expressed surprise that my resting heart rate was so high because I look "in shape."

(A true "resting heart rate" is measured first thing in the morning before sitting up.  I'm using the term loosely here.)

I haven't used my heart rate monitor (HRM) in over a year because I've been focusing on other forms of treatment and pacing and I can't keep up with everything at once.  Thinking back to when I was using my HRM, my resting heart rate was usually in the high 70's to mid-80s even back then.  (That's actually a pretty good resting heart rate for a PWME, but not good for a healthy man my age.)  So despite some improvements over the past year, my resting heart rate really hasn't improved at all.  It is still surprisingly high to health care professionals.

2)  I've been having shortness of breath (SOB) all week.  This is my most mysterious symptom. Despite all my tracking and graphing of SOB over the past few years, I still have no idea why it comes and goes.  It seems utterly random.

Tuesday was a very bad day for SOB.  I felt hungry, almost desperate, for air all day.  I remembered back to a day I felt this same degree of air hunger during my acute phase, just after I had been diagnosed.  It was scary.  I could think of little else all day and I eventually went to the emergency room of the local hospital, worried that I might need immediate treatment of some kind.

Now that same degree of SOB barely fazes me.  Although the sensation of air starvation is equally severe, I simply go about my day as if everything were fine.  It has become a part of life.

My conclusion is that while most of my perceived improvement over the last two years is real improvement, at least some small part of it must be attributable to me adapting to life with ME/CFS. I've tried very hard to keep my standards consistent for tracking purposes, but I don't think it's possible to ever keep them perfectly even over time.

App calculates Vitamin D intake from sun exposure

As one of my doctors, Dr. W., has repeatedly emphasized, people with ME/CFS are almost always low on Vitamin D and need supplementation.  I tested quite low on blood tests and have since been supplementing with 5,000 to 10,000 IUs per day until my vitamin D levels returned to what's often considered the "optimal range" -- in the 60s and low 70s.  I continue to take that same dose for maintenance, and I believe it has helped.  

On a day when I receive virtually no sun, I will always take 10,000 IUs.  If I get some sun exposure, I will usually reduce my intake to 5,000 IUs or less.  However, I was always unsure of how much to reduce my supplementation on days when I received significant sun exposure.

Someone on HealClick recently posted about an app that helps with that.  It factors your location, time of day, time exposed to sun, percentage of skin exposed and some other parameters and calculates how many IU's of vitamin D you received.

Here's the description of the App by its creators:  

"The idea behind this application is that it will help you track and manage your Vitamin D.
You setup basic information one time, like your height and weight and skin type and then any time you are outside, during the prescribed hours (and parts of the year), you can have it compute the amount of D you are getting in a stopwatch interface. It will also track how long you can stay out and warn you when the time is up. 

The application will notify you with the next opportunity to generate vitamin D.
Each day, you can see forecasts based on your location, and you can also see the solar position, [and] your generated vitamin D vs. target etc."

Here is a link to the Apple version of the app.   And here it is for Android.

There's also an interesting little YouTube video about Vitamin D and sun exposure from the makers of the app.  I learned a few things from it.  It's worth a watch.

I've just downloaded the app so I haven't had a chance to use it yet.  I'll come back and add a review after I've had a chance to 'take it for a spin...'

The case against Aspartame

One of the few good things to come out of my health problems is that I've become more aware of health and nutrition.  I have tried to spin the negative of my health problems into a positive by educating my family and close friends (subtly, and hopefully without becoming annoying).  My hope is that, because of my health problems, my family and friends can potentially avoid problems of their own.

While I've had some small successes, I've found that for the most part, people aren't very motivated to change their lifestyles or diets unless they experience health problems of their own. Case in point, my parents are both regular consumers of Aspartame (aka aspartate).  I have been trying to convince them to ditch Aspartame (along with sugar - for different reasons.)  My dad responded that he searched the internet for "dangers of Aspartame" and discovered nothing of significance.  I found that hard to believe.  So my dad challenged me to show him the links.  This post is my effort to do that.

First: For many years, controversy surrounded Aspartame and whether it was a carcinogen (a cancer causing substance).  Controversy also surrounded the FDA approval of Aspartame, which may or may not have been tainted by "irregularities" and suspicion in the process.  Over the years, research into the potential cancer-causing affects of Aspartame has found that Aspartame is probably not carcinogenic in small amounts.  Some still dispute this, but I am sufficiently convinced.  The unfortunate consequence of these findings is that, it seems, the message has mutated into "Aspartame is completely safe."

What's been lost are the other potential health hazards of Aspartame, namely that it has been repeatedly found to kill nerves, leading to or exacerbating nerve-related diseases like Alzheimer's, Parkinsons, MS, ALS, ME/CFS, and others...

There are far too many links and research papers to include in one blog post, so I will include only a few highlights.  After each link, I quote a key paragraph from the source.  But keep in mind that most of these links have a trove of information about Aspartame that goes well beyond the excerpts:

http://articles.mercola.com/sites/articles/archive/2011/11/06/aspartame-most-dangerous-substance-added-to-food.aspx

"Aspartate and glutamate act as neurotransmitters in the brain by facilitating the transmission of information from neuron to neuron. Too much aspartate or glutamate in the brain kills certain neurons by allowing the influx of too much calcium into the cells. This influx triggers excessive amounts of free radicals, which kill the cells. The neural cell damage that can be caused by excessive aspartate and glutamate is why they are referred to as "excitotoxins." They "excite" or stimulate the neural cells to death."

[The article goes on to say that nerve death due to excitotoxins is linked to, among other things, Alzheimer's disease]

http://www.ncbi.nlm.nih.gov/pubmed/23553132  

"Aspartame, a widespread sweetener used in many food products, is considered as a highly hazardous compound. Aspartame was discovered in 1965 and raises a lot of controversy up to date. Astrocytes are glial cells, the presence and functions of which are closely connected with the central nervous system (CNS). The aim of this article is to demonstrate the direct and indirect role of astrocytes participating in the harmful effects of aspartame metabolites on neurons. The artificial sweetener is broken down into phenylalanine (50%), aspartic acid (40%) and methanol (10%) during metabolism in the body. The excess of phenylalanine blocks the transport of important amino acids to the brain contributing to reduced levels of dopamine and serotonin. Astrocytes directly affect the transport of this amino acid and also indirectly by modulation of carriers in the endothelium. Aspartic acid at high concentrations is a toxin that causes hyperexcitability of neurons and is also a precursor of other excitatory amino acid - glutamates. Their excess in quantity and lack of astrocytic uptake induces excitotoxicity and leads to the degeneration of astrocytes and neurons." [Emphasis added]

http://dorway.com/doctors-speak-out/dr-blaylock/aspartame-msg-other-excitotoxins-the-hypothalamus/

In conclusion, there is compelling evidence to indicate that food additive
excitotoxins, such as aspartame, pose a serious danger to our well being,
especially so in the case of children and the elderly. It has been
demonstrated that excitotoxins in the diet can dramatically elevate free
radical generation for prolonged periods of time and that once induced, it
triggers a viscous cycle that ends in neuron death. Most authorities now
agree that elevated free radical generation is associated with virtually all
degenerative diseases as well as most injuries and toxins. It makes little
sense to expose the general public to a product that we know increases free
radical generation so dramatically and is associated with laboratory proven
injuries to the nervous system. 

http://www.fitday.com/fitness-articles/nutrition/healthy-eating/5-reasons-aspartame-is-bad-for-you.html#b

Aspartame can change the chemistry of the brain. Formaldehyde, a product of methanol, gathers in certain areas of the brain causing degenerative diseases such as Parkinson's, Alzheimer's and ALS. Aspartame consumption can also trigger seizures in both epileptics and other individuals without a history of epilepsy.  Aspartame may contain fewer calories than sugar, however, the toxic sweetener has the potential to cause serious damage to the nervous system and in the worst case scenarios can be fatal.

I could go on and include many others, but the point is made.  To be fair, there are sources that refute these findings (specifically the FDA), but it's interesting to note that none of them (at least that I have found) attempts to explain why the chemical process described above is wrong.  The response is generally, to paraphrase, "we haven't seen enough evidence to be convinced."

I've read the FDA's arguments of why Aspartame is safe, and I am not convinced.  I will not include those arguments here because I don't want to lend credence to them.  I'm not trying to be objective here, but, suffice it to say, if you want to read the other side of the argument, it is out there for you to find.  

Doubling down on Methylation

I started Dr. Yasko's methylation protocol in about March of last year.  Yasko recommends that patients implement supplements in phases.  She stresses they be implemented in a specific order and then results confirmed with tests before moving on to the next phase.  So it took me over six months just to build up to the point where I could start actually taking methylfolate and B12.

I took a step up in baseline before I ever even started taking B12.  The "step up" occurred in about September last year after I implemented Yasko's "short cut" supplements - mainly PS Complex and DHA.

I didn't really notice much of a difference after I finally added B12 and methylfolate, but I continued to do relatively well.

Toward the end of 2013, I moved residences and lost focus on methylation.  I continued to take the supplements, but didn't monitor my health as closely.  I stopped reading and learning about nutrigenomics, and stopped paying attention to how missed doses affected me.

In February and March this year, brain fog and limb numbness returned after an absence of about a year.  By accident, I noticed that on a couple of days where I forgot to take B12 and methylfolate, the brain fog and limb numbness disappeared again.  So it became clear that I was over-methylating - the methylation cycle was working too fast.

Now I'm off the B12 and methylfolate again (temporarily) and am going to figure out where things started getting side tracked.  At some point I unknowingly switched from taking the hydroxycobalamin form of B12 to methylcobalamin, which can be problematic for CBS+ persons like myself.  This may be why I was overmethylating.

As part of my re-dedication to methylation, I decided to read Yasko's new book, which supposedly makes complicated nutrigenomics a little more accessible.  I'll review it in a later post...