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

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

Friday, August 30, 2013

How big a role do mycotoxins play in ME/CFS?

The only explanation for the etiology of ME/CFS that makes sense to me is that it is a disease of complex origin, with multiple contributing factors.  I simply don't believe that if ME/CFS had only one cause (say, a virus) that its origins would have eluded so many dedicated researchers for this long. I believe that, like autism, multiple sclerosis, autoimmune diseases in general, and other diseases of inflammation, we're dealing with a complex nexus of environmental, pathogenetic, genetic, dietary, vaccine-related, and possibly stress-related factors.

To my mind, this multiple causation theory is the only theory that explains why ME/CFS and other "chronic illnesses of unknown origin" aren't more common than they are.  If it's environmental, then why don't all members of a moldy household always get sick?  If it's solely genetic, again, why haven't we seen a clear lineage of ME/CFS being passed down in affected families?  (Sometimes we do, sometimes we don't).  If it's a pathogen, why don't all people with high EBV and CMV titers get ME/CFS?  Why don't we all have borrellia?

I personally don't believe there's some mystery pathogen out there that we haven't identified yet (ala XMRV).  I believe if it existed, it most likely would have been found by now.  One even hears the theory that ME/CFS tends to hit "type A" personalities more often, but if that's true, I know quite a few people who are much bigger "stress cases" than me and they're doing just fine.  Vaccines?  Well, you know where I'm going with that....

Instead, I believe that when they finally solve ME/CFS, they'll discover that us PWMEs are the unlucky few who suffered the chance convergence of triple or quadruple insults to our systems, often all within a short period of time.  If you read enough PWMEs' "origin stories" they almost all describe a piling on of various factors: a stressful event, then a viral infection, followed by a vaccine, etc.

By the way, take a moment to think about what order of importance you would have placed these five commonly suspected factors in ME/CFS.  My order, from most significant to least would probably be:

1.  Pathogens
2.  Genes
3.  Vaccines
4.  Dietary
5.  Environmental
6.  Stress-related (I question whether this even belongs on the list)

(Have I left anything major out?)

I couldn't even tell you why I've ordered the list in this way.  It's the gestalt product of hundreds, maybe thousands, of articles, blogs and forum posts that have washed over me and are now sloshing around in my head.  My ordering is likely to shuffle at any time based on the latest CFS Facebook link, or some fad theory making the rounds.

Now consider that the path to ME/CFS is likely different for each patient.  Maybe Patient A's path to ME/CFS was 80% environmental, and he was then pushed to the brink (another 19%) by pathogens and a little stress was the coup de grace.

And Maybe Patient B has a homogenous MTHFR genetic polymorphism, which gets her 50% there, and a vaccine at an inopportune time finishes the job.  The different pathways to ME/CFS could be endless.

(Side note: with these complexities, not to mention the complexities of our ever evolving symptoms is this "multi-system" disorder, I believe the best chance we have to get to the bottom of ME/CFS is through compiling vast data banks of detailed patient histories and then applying complex data analysis techniques.  This, of course, depends on as many of us as possible participating in patient databanks like the Open Medicine Institute's, discussed in this post)


All of that was my prelude to saying that I've been rethinking the role of environmental issues, particularly mycotoxins (mold-related toxins).  For a friend of mine, this has been the key to his improvement in recent years.  He had to go to great lengths to enact this improvement, even moving to a city with drier, cleaner air, and then renovating his home to remove mycotoxins and environmental chemicals.  It hasn't cured him, but he has done a remarkable 180 and can do things that I can't even consider right now.  And more importantly, he has control over his crashes, for the most part.  If he crashes, he knows why and he knows what he can do about it (get out of the triggering environment.)

That same friend recently posted this article that has me rethinking the role that environmental factors might play in my illness.  I think all patients should read it and consider whether mold is an issue for them (if you haven't already):

As I told my friend, I have always intended to investigate mold issues as a factor in my illness, but it becomes hectic when you're chasing so many different possibilities and treatments. Even high priority questions like mold could take me years to get around to at my current rate.  There's only so much I can investigate at once.  But I'm now moving "mold" up higher on my list of priorities.

For those like me that haven't had a chance to consider mold very much, here are a few other sources to get you started:

  • Mycotoxins are the main focus of one of ME/CFS's more well-know physicians: Dr. Shoemaker.  I admit, I haven't even had the chance to learn the first thing about Shoemaker's theories.  

One thing that gives me pause:  When I search the Internet for studies or articles on the role of mold exposure in ME/CFS, all results point back to this one study linked above.  I'd like to see it replicated and peer reviewed.  (This is when the progress of ME/CFS research becomes frustratingly slow...)

Wednesday, August 28, 2013

So a man walks into a gym...

Yesterday I stepped foot in a gymnasium for the first time since before I became ill.

For the first year or so that I had ME/CFS, I didn't do any exercise.  I didn't feel up to it all, and if I tried, I crashed.  My resting heart rate at the time was already in the 100s, so it felt like any exercise would make my heart explode. And I won't even get into the problems with POTS and exercise.

Then with a little improvement, I started doing some Tai Chi, which is pretty much the most mellow form of exercise you can possibly do.  I hesitate to even call it exercise.

After a while, it became clear that I could handle Tai Chi with no problem, and I began to feel the urge for that old after-exercise feeling.  You know, that feeling where you're relaxed and that your blood and lymphatic drainage system is flowing more freely.  So as my treatments progressed and I started to feel better, I moved on to yoga.  First I started with my wife's low-key prenatal yoga videos.  Then I moved on to regular yoga videos and to doing sequences of "asanas" that I remembered from my days of taking yoga classes.

During this period, I also started doing far infrared sauna sessions every 2 or 3 days, which for some reason, always left me with a feeling like I had exercised.  Truely, the feeling is almost identical, and I even record my sauna sessions in the same column as my so-called "workouts" on my health charts.  I believe that the same principles are at play: blood flow and lymphatic drainage.

In the last few months, I have graduated to lifting weights at home, trying to gain back some of the over 35 pounds in muscle mass that I lost when I got ME/CFS (OK, some of it was fat!).  I don't want all of it back, but half would be nice.  My goal is to get up to about 195-200 lbs (88-90kgs), which is what the Body Mass Index says is ideal for my height and build.  I am at about 194 lbs now, so I'm close.

I lift smaller weights than I lifted before ME/CFS, as the goal here is not to build showy "beach muscles" but rather to improve my health and well being.  Excess build up of lactic acid would only be counterproductive to my goals.

Yesterday, I took the next step and actually went back into a gym.  Although I have a nice collection of different sized dumbells at home, my home workout options are limited when it comes to leg exercises, and I definitely don't want to be one of those people who has solid upper body mass, balanced on top of toothpick legs.  

Credit: WeKnowMemes

So I cautiously banged out (oxymoron?) a few sets of leg presses, calf presses, and leg raises, and then I rode a reclining stationary bike for ten minutes. (The reclining bike is better for keeping your heart rate in check. Most gyms have at least one).  The whole time I wore my heart rate monitor and made sure to keep my heart rate under my estimated AT of about 100-115.  I found that I could more or less make it to hover just below my AT and stay there if I carefully monitored it and adjusted my pace accordingly.

Let me be clear about one thing, I'm not suggesting that these exercises are responsible for my improvements.  The improvements came first, likely from treatments, and the increased levels of exercise followed.

But the whole point of this post is this: Damn it felt good to be back in a gym.  That feeling that I've had for the last two years, that I'm an alien in the world of the physically active, melted away for an hour. Simply being around the hustle and bustle of a gym, the people running around in their slick workout outfits, carrying towels, feeling good, wiping down equipment--it felt right.  Everyone's iPoded up, struttin' their stuff, in their own worlds.  (It's quite comical, actually.)  I even welcomed that gym-y smell of stale sweat.

So far today I feel OK, but I wouldn't expect a PEM crash until tomorrow if it comes.  If this experiment works out, I plan to make gym trips a once-a-week thing.  I'm always wary of pushing too hard and relapsing, but at the same time, I need to find out exactly what my limits are as they change over time.  As the respected Dr. Klimas has said, doing as much "exercise" as we can do without crashing (and that's the key), however much or how little that may be, could be a key factor in reversing the dysfunctional gene expression that we experience.  This is a controversial opinion, as many patients report being made worse by even the slightest of exercises, but in my case, I think I'll continue on my path and proceed cautiously.

Monday, August 26, 2013

Open letter by Dr. Montoya

A friend of mine who is a patient of Dr. Jose Montoya at Stanford University brought this letter to my attention.  In it, Dr. Montoya summarizes all of the ongoing research that he and his team at the Stanford Initiative for Study of Infection Associated Chronic Illnesses (that's a mouthful!) have been working on.  And a few more that they will be working on soon.   

The entire letter is worth reading, but I wanted to highlight a few points:

In reference to his study of infectious pathogens that may contribute to chronic diseases, Dr. Montoya writes:
"Towards this end we are collaborating at Stanford with: Manisha Desai, Ph.D, Clinical Associate Professor of Medicine and Holden Maecker, Ph.D, Director, Human Immune Monitoring Center, and my colleagues at Columbia University Medical Center in New York City: W. Ian Lipkin, MD, Director, Center for Infection & Immunity, and the John Snow Professor of Epidemiology, and Professor of Neurology and Pathology and Mady Hornig, MA, MD, Associate Professor of Epidemiology."
It's things like this that get me charged up.  It seems we're starting to see more collaboration among the heavy hitters in the ME/CFS research world.  When doctors like Montoya and Lipkin start collaborating, it's hard not to believe that good things are coming.

The other tidbit I liked was the section on gene expression:
Investigation of gene expression and immune system dynamics of infection in acute and chronic diseases: 
Our team is currently working on new studies to understand the immune response and possible immune dysfunction observed in our patients. We are looking at gene expression, cytokine profiles, and phospho immunoflow to learn whether our patients’ immune response correlates with the presence of pathogens and other infectious agents. We have embarked on the task to identify new biomarkers that may help predict changes in disease over time and response to changes in medication. 
I like that they are studying the nexus of the immune dysfunction and gene expression in ME/CFS, as these are the two main focuses of my treatments.  I truly believe, in my case at least, that immune dysfunction is at the center of my problems, and that genetics may provide the best clues to how to reverse it.  

I'm not sure how I feel about the use of the word "possible" next to "immune dysfunction"?  C'mon, I think we're way past the point of mere "possibility," right?  I'm mostly kidding.  Scientists still consider gravity a "theory," so I guess the bar for conclusiveness is set pretty high.     

Tuesday, August 20, 2013

What if....

I know a joke's not funny if you have to explain it, but I feel I should explain this one before someone gets upset at me.  This is simply the thought that popped into my head after reading a forum thread about how poorly ME/CFS patients have been treated by others.  That lack of basic empathy from some people, and the inability to understand the simple idea that not every disease is fully understood, seems like a kind of sickness in and of itself.

Friday, August 16, 2013

Update on my new brain fog medicine

I don't even want to put the name of the drug in the title or first sentence of this post because that's when it gets picked up by Google and I start receiving unwanted hits from outside the ME/CFS community.

Now that we've dispensed with that space-filler, I can tell you we're talking about Adderall.  My first post about Adderall was here.

Yesterday I had another, more serious attack of brain fog -- one that would have crushed last Friday's brain fog into oblivion.  So this was a better test for the Adderall.  Again, I took only a quarter of a 20 mg tablet (for those that are math challenged like me, that's 5mg, which is a very small dose).

My impression is that Adderall isn't going to be the wonder cure to brain fog that I had hoped.  Granted, I took a very small dose, but something tells me a higher dose won't matter.  I didn't feel that the Adderall really cleared the brain fog or reduced the feeling of brain inflammation, rather, it simply made it easier for me to power through the brain fog and focus my thoughts in spite of the fog.  But whenever I took a break from whatever I was focused on and assessed how I was feeling, that tell-tale sense of brain inflammation was still there.  Somehow I don't think a higher dose will change that.

The best analogy I can come up with is, imagine that having no brain fog is like running on a flat hard surface.  Brain fog is like trying to run in 2 feet of water.  So I was hoping that the Adderall would take the water away.  Instead, it simply built up my leg muscles so that it became easier to run through water, which is of course helpful, but not nearly as good as if the water were gone.

I'd be curious to hear from any other ME/CFS patients who have taken Addy if your experiences were the same.


For now I think my best bet for clearing brain fog is to get back on Vitamin B12.  I hardly ever had brain fog issues during the 9 months that I was on a B12 protocol previously (Fredd's protocol), and it only started creeping up after I stopped taking B12.  (Coincidence? Maybe, but B12 is the most oft-cited treatment for brain fog on the message boards, by my assessment.)

I'm just now finishing the preliminary steps and the "short route" supplements in Yasko's protocol, so I'll be adding B12 back into my regimen again soon.

Tuesday, August 13, 2013

I have a high temperature...which is good!

I had a good day all of yesterday -- well above my baseline. Then at night, I started feeling really weird, with a headache and body aches and what felt like a fever.  It almost felt like how I used to feel when I got sick, which is somehow different than now with ME/CFS, even though I would describe both symptom sets as "flu-like."  So I took my temperature preparing for it to be a disappointing 97.2 again, but it actually got up to 99.6!   I was very happy about this. Dr. C has always told me it would be a good sign if I ever got an honest to goodness fever - which I think that qualifies.  It is apparently a sign that the immune system is fighting back.

This morning my temperature was back down to 98.7, which is still very high for my post-ME/CFS self, especially for the morning.  But it's not technically a fever anymore. So who knows, but maybe this means something good and maybe it doesn't?  

I am encouraged simply because I have never had any temperature this high since before I came down with ME/CFS.  Every time I thought my temperature was high, it would turn out to be low -- usually in the low 97s if not in the high 96s.  So this low body temperature has always been a hallmark of ME/CFS for me; an objective, tangible measurement of one thing that makes ME/CFS different than all my previous, non-chronic illnesses.  If that has somehow changed...well, I can't get ahead of myself yet.

Since I'm out of paid time off (PTO) for the year, except for two days which I'm saving for later, I still dragged myself into work today, which is fun.  

This is like a trophy photo for me. I'm quite proud of it.

Sunday, August 11, 2013

Dr. Appointment: New Treatment and Some General Life Musings

This past Wednesday I had an appointment with my "B Team" ME/CFS specialist, Dr. W.  Usually I don't even blog about my appointments with him anymore because they've settled into a routine where we simply check my labs and renew prescriptions as necessary.  But this time we added a new high-risk, high-reward treatment.

I told Dr. W that most of my symptoms have shown improvements, although slight, over the past six months, except one.  Brain fog.  I used to get brain fog only rarely.  When it hit, it was utterly crushing.  It would prevent me from doing anything but sitting around feeling sorry for myself.  (I wrote about how bad my brain fog would get in this post from February.)

Over the last six months, the situation has gradually changed.  I don't think I have had even a single episode of crushing brain fog since that February post.  In its place, I have been gradually getting more and more frequent episodes of a more subtle brain fog--a much more mild version where I am still mostly functional.  As of recently, I would estimate the brain fog is there about 1/3 to 1/2 of the time. It makes me wonder if I'm even dealing with the same type of "brain fog" as before.  Maybe this new version is caused by something completely different altogether.

I asked Dr. W about a treatment called Vyvanse, which was brought to my attention by my friend Bret, who I know through this blog, and more recently, some other patients.  Vyvanse was developed as an ADHD drug, and is one of the newer drugs for that purpose in the same class as older drugs like Ritalin and Adderall.

Dr. W stated that he didn't have enough experience with Vyvanse to feel comfortable prescribing it, and besides, most insurance companies don't cover it for off label uses yet.  Instead, he recommended Vyvanse's cousin Adderall.  I was receptive to the idea of Adderall on an as-needed basis for brain fog because I've seen a number of other PWME's post about their positive experiences with it.  So he decided to start me with Adderall and said that he would look more into Vyvanse in the mean time.

Now, here's the serious rub: Adderall can be habit forming, especially when taken every day.  We had a frank discussion about ways to avoid addiction.  My goal is to use it in small doses (much smaller than would be given for ADHD) and only as needed when my brain fog is particularly bad.  To help force me to pace my dosing, he prescribed me only a two month supply with no refills.  My next appointment isn't for 5 months.

On Friday, I tried my first dose - a tiny crumb from one of the tablets.  I believe there was a definite improvement of mental clarity, which lasted for about 4 or 5 hours.  Even after it wore off, it seemed that my brain fog was gone for the rest of the day.  I haven't tried it again since, but that initial test was promising.  At the same time, I know I have to be careful with this drug.  I will update as necessary...


I had a particularly good week health-wise with no major crash days and decent functionality.  And so I feel like I'm in a good place, mentally, right now.  I understand this is easy for someone like me who's only moderately ill to say.  But in my present state, I feel like I can carve out a happy life for myself even if I never improve any further.  Of course, I always feel like that when I'm on a hot streak.  If I crash tomorrow, I'll feel much differently.

Monday, August 5, 2013

Some ME/CFS projects in waiting

Ever since I started this blog, I've felt that I had at least one other ME/CFS-related project in me. Whether it's an advocacy project, or some other kind of community building activity, I feel like I have something else to give.  Of course, I'm taking the long view on this, and not necessarily going to dive into something right this instant.  Then again, if the stars align, maybe I will.  For now I just want to get down a few of my ideas in writing.

1.  An ME/CFS Podcast or Webcast

At first this idea seemed dauntinglike it would require an immense amount of technical know-how and expensive equipment.  But after a little research, I'm now convinced that it could be done fairly cheaply and with minimum technical skill.  There are apparently several brands of inexpensive software to help amateurs produce a podcast with relative ease.

I envision it working like this:  First, I would not attempt it alone.  I would want at least one co-host, but preferably two.  A mix of genders would be best.  We would meet online remotely for the show's taping, which amounts to a glorified conference call but with better audio quality.  We would produce one show per monthany more is unreasonable to expect of chronically ill people.  

Before each show's taping, the hosts would circulate and collaborate on an agenda.  The show would have three segments.  In the first segment, the hosts read and discuss a few of the major headlines from the ME/CFS world from the previous month.  The banter would be a mix of informative (based on the hosts' research), but mostly personal perspective and friendly debate among the hosts.  As the show grows, we would try to bring in occasional guests for interviews.

The second segment would raise topics of a more "social support" variety.  There are literally endless numbers of life-with-ME type topics that could be gleaned right from the ME/CFS message boards.  In the final segment, we would read select listener emails and discuss whatever topics the listeners raised.

The overall idea would be to generate a good mix of information and entertainment content - especially for those PWME's who have visual or neurological issues that make extended computer use difficult. Obviously, there are a number of logistical hurdles that would have to be overcome to get this project going, but with the right partners, I think it would be a fun, worthwhile, and hopefully valued by a certain segment of our community.

It also occurred to me that, rather than doing a  true "podcast," the show might be accessible to a wider audience simply uploading it as an audio file to YouTube.

2.  Annual Awards

As far as I know, the ME/CFS community doesn't have any awards  I've seen a few bloggers who have won general "health blogger" awards, but nothing for our community specifically. In my view, the awards wouldn't have to be limited to just bloggers.  We could award researchers, journalists, foundations, doctors...whatever we can think of.

I haven't decided yet how the nomination process would work (maybe open submission by email), but I would want the final voting to be open to all members of the community.  That way, the winners can have the satisfaction of knowing that they were chosen by the community at large.  The website could briefly profile all of the nominees before voting begins.

I wouldn't want to present the awards, alone, from my humble little blog.  Rather, I'd either set up a separate foundation with it's own website, or partner with a site that has more name recognition in the community.  As for the name of the awards, most likely, we might simply take the name of my partner's organization and add an "s" to the end, ala Emmys, Grammys, Tonys, etc.

No money would come with the awardsjust an honor.  At first, the awards might not mean much to the recipients, but as the years pass, I hope the name recognition would catch on and the recipients would receive it with pride.

Off the top of my head, a few categories to consider:

-Achievement in ME/CFS research
-Excellence in ME/CFS patient care (by a doctor or other health care professional)
-Patient advocate of the year
-Blog post of the year (journalistic style)
-Blog post of the year (personal/opinion)

I haven't decided yet if the awards should include some sort of tangible plaque or trophy, or if we would simply inform the winners of their recognition and maybe forward an electronic badge or emblem that can be posted on their website.  I'm leaning toward the latter because, well, it's free.

3.  Supplement Exchange

I of course can't take credit for this idea.  It has been talked about on forums a few times that I can remember.  But as far as I know, it has never gone past the "idea" stage.

There are an enormous number of us with large boxes of unused supplements at home. Often we've tried one or two capsules from a $30 bottle and realized we don't react well.  If that occurs two, three, four or more times, suddenly we've got a lot of money tied up in inventory.  Wouldn't it be great if we could all exchange our inventories for something else we can use?

Ideally, we'd want a separate website just for this function, as opposed to a messy sub-forum or some other site that's not tailored to this particular use.  Each user has an account profile, which they populate with the names, expiration dates, and approximate quantity remaining of each spare supplement they have.  If one is looking to make a trade, they log in, search for someone with the supplement they need and propose a trade.  Both parties simply pay to ship the supplement to the other person.  

Naturally, there would be a temptation by some to list and exchange prescription drugs, but for legal reason, this would not be allowed.

A downside to this idea is that I have absolutely no computer skills, so I'm really just posting this in the hopes that someone might take this idea and run with it!