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

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

Saturday, April 28, 2012

New doctor, new treatment plan

Last month, I wrote briefly about my good fortune in getting an appointment with one of the most highly-respected CFS doctors/researchers on the west coast of the United States. (Dr. C).  Yesterday was my first appointment with Dr. C, and it exceeded all expectations.  Here's a brief summary:

Overall Impression

I must admit, I left the appointment with a slight sense of awe.  Dr. C comes across as not only the brightest doctor I've met, but probably one of the brightest human beings I've met.  He speaks very quickly, as if his mouth can't keep up with his rapid train of thought.  His passion for ME/CFS research is impossible to mistake.

Dr. C spent exactly an hour and 24 minutes in the exam room with me.  He took by far the most detailed medical history of any doctor I've seen, even inquiring into illnesses from my childhood. Mind you, this is a doctor who accepts ordinary insurance plans, meaning he presumably receives the same amount for this appointment as a doctor who spends 5 minutes in the exam room.  Clearly, he's not just in this for the money.

Th1/Th2 Imbalance

Dr. C has a fairly strong reputation among patients online.  You don't read many criticisms of him.  When you do find criticisms, they are usually to the effect that "he is too focused on enteroviruses."  I think this misses Dr. C's main point.  More than being an "enterovirus guy," Dr. C is really more of a "Th1/Th2 imbalance guy."  As we know, Dr. C isn't alone in this theory.

Dr. C explained the imbalance using a see-saw analogy.  According to him, the normal state of the immune system is neutral between Th1 and Th2, represented visually as a see-saw in a horizontal position.  When we experienced the initial viral infection that triggered our ME/CFS, the see-saw tilted toward the Th1 side.  This is what the immune system is supposed to do.

The problem arose when that initial infection was finally suppressed.  For reasons not understood, our immune systems didn't return to the normal, horizontal position.  Instead, it shifted too far to the Th2 side, and became stuck there.

When an immune system is in its normal, balanced position, it keeps all of the viruses in our bodies suppressed.  (As you may know, when your body defeats the initial infection, the virus is not completely eliminated from the body.  Rather, it hangs around at a subclinical level.)  A healthy immune system ensures that viruses stay at a subclinical level.

With the immune system stuck in Th2 mode, viruses can reactivate.  This is where the cycle of crashes and recovery comes in.  Viruses periodically rally and mount an attack on the body.  The immune system responds by switching back into the Th1 mode just long enough to defeat the attack.  When this happens, you experience a crash.   

After the virus is suppressed again, you recover from the crash.  But instead of the immune system returning to the neutral position, it returns once again to the Th2 position.  This allow the virus to mount another attack, and the cycle continues.

It is thought that overexertion or stress can trigger the virus to mount another attack, which is why many of us crash when we do.  But these certainly aren't the only triggers.  Viruses will mount renewed attacks on their own, which explains why simply "taking it easy" doesn't eliminate crashes.  

This is the basics of Dr. C's (and others') theory, which I hope I've accurately captured.  His explanation was actually much more detailed and nuanced, but I was simply not able to take notes fast enough to keep up with him.  

Enterovirus Theory - Background

Enteroviruses are viruses made up of RNA strands, rather than the more typical DNA strands.  The most well known type of enterovirus is polio, but there are 70-80 lesser known enteroviruses, and probably many more yet to be discovered.  

Going into the appointment, I was skeptical of the enterovirus theory of ME/CFS.  It isn't discussed much or given much credence on ME/CFS forums.  But after listening to Dr. C, I am more convinced that enteroviruses may be responsible for a large portion of ME/CFS cases.

Dr. C didn't exactly deny that some cases of ME/CFS can be caused by reactivation of common viruses like Epstein Barr or HHV-6, but he seems to believe that the antibody levels seen in most PWME's are not sufficient to explain their symptoms.  In my case, he believes my IgG antibody levels for EBV and HHV-6 are equivocal a worst--but not enough to explain my condition.  (Dr. W, on the other hand, interprets the same lab results as indicating reactivated infections.)

According to Dr. C, enteroviruses are difficult for the immune system to kill because, when they detect that they have activated the immune system, they retreat back into a protected state.  [Dr. C illustrated this point with a hand gesture like a venus fly trap closing -- which I interpreted as representing the retreat of the virus back into the infected cell.]  Enteroviruses have also developed a clever way of deactivating the mechanism within cells that normally causes the cells to, essentially, commit suicide after being infected.  The suicide would "take the virus down with it," but the virus has learned to override this response.  

Dr. C offers his patients the option of having a biopsy of the stomach lining, which is the most likely place to detect an enterovirus.  He states that the test is 80% effective at detecting the presence of enterovirus.   This biopsy costs $250, and is not covered by insurance.  I, personally, have elected to have the biopsy.  

Enterovirus Theory - The Evidence

Obviously, Dr. C couldn't show me the direct evidence of his enterovirus findings -- in other words, he couldn't let me peer through his microscopes.  (He did, however, invite me to read his research papers).

But in lieu of direct evidence, he cited some interesting anecdotes.  The first was that his patients' generally fall into four categories.  The common element among the four categories is exposure to impure water prior to initial onset.  The categories were (1) people who had traveled to Mexico just before onset, (2) surfers & swimmers, (3) people who went camping and drank unfiltered water, and (4) [unfortunately, I can't remember the fourth].

Side note: In my case, I'd unwisely gone surfing four days prior to onset at a beach that is notorious for it's poor water quality, and that often has health advisories posted at the water's edge.

His other anecdotal evidence was the observation that, whenever we hear about an "outbreak" or "cluster" of CFS cases, we usually find reports of water contamination in the area.  In the case of the famous Incline Village outbreak, apparently it was discovered that a lake above the town had recently been polluted by a sewage spill.  [I have not had an opportunity to independently reseach this.]

Why don't more people get ME/CFS?

After hearing the above, I wondered why more people don't get ME/CFS.  Why don't all surfers get it?  Why don't all people who travel to Mexico get it?  Or all Mexicans for that matter!  Dr. C explained that it may be a combination of genetic predisposition and/or the chance convergence of multiple viruses which, combined, overwhelm the immune system.  [This isn't the first time I've heard this latter theory.  Other researchers subscribe to it.]

On the Role of Immunizations in ME/CFS Onset

As you probably know, immunizations are suspected to play a role in some patients' onset. Dr. Klimas acknowledged this in a 2009 New York Times Interview.  

While explaining my medical history to Dr. C, I recounted the unusual "double-dip" illnesses that accompanied my onset.  The brief chronology is: 

1.  I surfed at a dirty beach
2.  Four days later I became extremely ill and remained so for 3+ weeks
3.  I recovered to about 95% and remained so for another 4 weeks.
4.  In preparation for my daughter's birth, I received a TDAP immunization.
5.  Five days later, I crashed again and never recovered.  I've had ME/CFS ever since.

Dr. C believes that this pattern may be the "chance convergence of multiple viruses" that overwhelmed my immune system, as discussed in the section above.  While immunizations involve the injection of "killed" or "inactivated" viruses, they still elicit an immune response.  In fact, this is the entire point of vaccines--to kick the immune system into action so that it learns how to deal with "the real thing" if it encounters it in the future. 

So it seems likely that I may have already been in a sort of post-viral mode, where my immune system was still recovering from the initial infection, when I received the TDAP immunization.  This double hit may have been enough to overwhelm my immune system and send it into its current state of malfunction.    

Treatment Plan

Dr. C states that he typically treats patients with any combination of 3 treatments.  The first is Gammaglobulin injections to boost the immune response.  Because my bloodwork was adequate in that area, I do not qualify for this treatment.

The second is with Interferons.  This is a highly toxic treatment which is usually reserved for only those in severe pain.  Since pain is not a major component of my ME/CFS, we ruled this out.

The third is an immune stimulant called Equilibrant, either alone or in combination with Inosine and Thymic protein.  He states that he as treated over 800 patients with Equilibrant, and that 53% of his patients respond, and that some of them return to normal, balanced immune function.  When the Equilibrant works, it returns the immune system to the balanced position, so that it is no longer simply reacting to the viruses, but actively suppressing them.  So, while I'd certainly like better odds, I'll welcome a 53% chance of fixing my immune system.

The Equilibrant comes in packages of 90, which are sold for $45 each.  I was advised to start with 1 pill per day and gradually work up to 6 per day.  Obviously, it is expensive, but apparently those who improve can reduce their dosage to a 1-per-day maintenance dose.  

As a side note, Dr. C says Hispanics/Latinos tend to require much lower doses of Equilibrant, while African Americans typically don't respond to it all, unfortunately.  

Location of the Virus

Dr. C was the first doctor to offer an answer to the question: why do I experience pain in the kidney areas?  The kidney-area pain is like a barometer of my overall health -- when it increases, so do my flu-like symptoms, aches and pains.  Dr. C explained that once inside the body, viruses can move to any location they choose.  For some, they move to the brain.  That's why many PWME's experience brain fog.  For others it's the heart, others the lungs, and so forth.  (The lungs, in fact, are a common location, which is why so many of us experience shortness of breath.)  

He also said that kidney pain is not nearly as uncommon as I had believed.  A fair number of his patients get kidney-area pain due to viral infection in that area.  This made me feel a little better.

A Note on Low Dose Naltrexone

When he heard that I was taking LDN, Dr. C commented that it doesn't seem to help many patients.  In his experience, it helped only a small percentage, but for those it helped, it helped very significantly.  

Further Reading

For further reading on enteroviruses, Dr. C recommended that I study the following two websites:

My Conclusion

I tend to be cautious about new doctors and their treatment plans, but Dr. C presents a compelling case.  If nothing else, his conviction and confidence in his findings are hard to ignore.  I certainly intend to give him a fair chance to fix me.   

Thursday, April 26, 2012

Health blogger threatened with jail time...

Have you heard about the health blogger in North Carolina who is being taken to court for practicing nutrition without a license?  Apparently, the state is suing him for advocating the paleo diet, alleging that his advocacy of the diet amounts to "practicing" nutrition.

Although most of us ME/CFS bloggers try to include disclaimers stating that we are not doctors, have no medical training, etc., this is may not be enough.  In the case of this particular blogger, posting strong disclaimers both before and after his posts was not enough to deter the State of North Carolina.  As ridiculous as the state's position seems, I think it's best to err on the safe side and stick to two rules:

1.  Be clear that you are recounting your personal experiences whenever possible, and
2.  When summarizing research, cite to your source(s) and make clear that you are simply paraphrasing or condensing the cited material.

And now for the ultimate irony of this post:  

Disclaimer: Although I am a lawyer, I do not practice in the area of medical licensing.  The above "rules" do not constitute legal advice, and are only intended as a lay opinion.  If you have any doubts about the legality of a blog post or topic, consult a qualified attorney who is licensed in your jurisdiction....or whatever seems prudent to you.  Just don't rely on my two "rules."

Wednesday, April 25, 2012

Probiotics: Putting the "error" in "trial and error."

Recently, I decided to experiment with a super-potent brand of probiotics called VSL3.  In spite of of the cost (almost $60 in capsule form), I thought I might need these super-biotics because I'd recently taken two full courses of antibiotics.  Since I'm already fighting off candida, I figured that those two courses of antibiotics must certainly have decimated by gut flora and given the candida enough room to mount a full scale attack.  So I went for what I called in a previous post, "the nuclear option" of probiotics: VSL3, to replace all the "good bacteria" that the antibiotics must have killed.

I had ordered the VSL3 over the internet, and it arrived on my doorstep two days later in a Styrofoam cooler the size of a small TV set.  Deep within the cooler, under several layers of ice and exotic packaging, was a tiny bottle of well-chilled probiotics.  I felt a little like I was involved in international espionage - like I was receiving a dangerous agent of biological warfare.

I took one capsule of the VSL3, for the first time, on Saturday night before going to bed.  The next morning I felt nauseous and crashed all day.  (Although, the strange thing about this crash was that it was limited to just one day.  I've never before had such a strong but brief crash).

Since nausea is not one of my regular ME symptoms, I figured that both the nausea and the crash that came with it, were probably caused by the VSL3.  But I decided to give it another try on Monday night.  After all, the VSL3 was probably the most expensive item in my refrigerator by a factor of 10.  I didn't want to let it go to waste.

Tuesday morning brought the same nausea and an even worse crash.  This crash came with a rapid heart beat, like the bad crashes I used to experience very early on after initial onset of ME/CFS. So I've decided to cut my losses and write off the VSL3 as a failed experiment.

[5/12/12 update:  I've since been advised by a PWME friend that he's heard that VSL3 causes that exact same reaction -- rapid heart beat and all -- for a certain subset of PWMEs.  Obviously, I cannot verify my friend's statement, so I'm merely relating what he told me.]

To be fair, several people on PR have reported good experiences with VSL3, so it may be simply that the product wan't right for me.  But this brief setback certainly won't prevent me from continuing to search for the right combination of supplements and prescription(s) to get me into remission.

Sunday, April 22, 2012

Avoiding crashes: like avoiding hangovers

There was a time in my twenties when I found myself making one particular mistake over and over:  About three or four times a year, I would wake up with what felt like the world's worst hangover -- the kind of hangover where every atom in your body wants to purge itself simultaneously.  Each time, I would ask myself, "how did I possibly I let this happen...again?"  Then I would promise myself: that was the last time!

Inevitably, I would let it happen again.  

Then, one day, I heard a radio program discussing a psychological study about why people repeat their mistakes in spite of themselves.  I don't remember the conclusion of the study, but it got me thinking about how foolish it was that I continued to make the same mistake repeatedly.  I finally resolved to do something about it...something more than vague resolutions.  

I came to the conclusion that my hazy but well-meaning intentions were completely insufficient.   They were insufficient because they relied on me making a judgment call ("should I have another drink?") based on how I was feeling at the time of the decision.  This, of course, was an awful predictor of how I would feel the next morning.  What I needed was to take the decision out of the hands of the person who had repeatedly bungled it (the 11:00-p.m.-on-a-Saturday-night Patrick), and put it in the hands of a different Patrick.  

On the other hand, I didn't want to leave the decision to hungover-Patrick either, because that Patrick would choose to never drink again.  I needed a moderate Patrick; a Wednesday-at-noon Patrick to make a decision by which we would all abide.

Now, the only way that Wednesday-at-noon Patrick could hope to have any control whatsoever over Saturday-at-11:00 Patrick was to set specific, quantifiable rules.   Vague admonishments like "don't drink too much," had already failed.   So I established two simple rules: (1) no more hard alcohol--stick to beer and wine, and (2) no more than "x" drinks in a night.  Period.  (The value of "x" is private.  Sorry.)

For the most part, this stratagem worked, and I was able to avoid hangovers for years and years, while still enjoying myself socially.

By now, I'm sure you've predicted where I'm going with this.

I've recently realized that I need to apply the same strategy to ME/CFS pacing.  If I leave my daily planning up to the Patrick-who's-feeling-pretty-good, that Patrick will always enthusiastically dive into a few too many activities, leading to the inevitable crash.  I've recognized this pattern emerging once again, and I'm determined to squelch it more quickly than I did the hangover problem.

So now, I have one simple rule: One errand per day, maximum.  No exceptions.  No matter how good I'm feeling on any particular day, I no longer trust that feeling any more than I trust Saturday-night Patrick.  

So far, I've only employed this strategy for a week, but I think it may be working.  In the mean time, I'm off to post this analogy, in reverse, on a blog for alcoholics.

I kid. 

Thursday, April 19, 2012

Do I need to see *multiple* ME specialists?

I just finished my second course of antibiotics since the start of the year, and just like the last time, I'm riding a hot streak again.  Any time I go for more than about 4 days without a crash of some kind, I consider myself to be on a hot streak.  My crashes are ordinarily regular and dependable.

According to the collective knowledge of the ME/CFS blogosphere--and common sense--when one feels better for a time after antibiotics, it suggests chronic bacterial infection.  (So far, I've mainly focused my treatment on my viral infections, such as EBV and HHV-6.)  I have two possible theories to explain this.

The only bacterial infection that appeared on my blood panels was mycoplasma pneumoniae, a common ME/CFS co-infection.  Only the IGG titers were high (not IGM), but they were very high, indicating a possible re-activation of an old infection due to my weakened immune system.  (3.08, where anything above 1.1 is considered positive.)

The other possibility, of course, is that I have another, unidentified chronic bacterial infection...probably something related to Lyme disease.  I've had the Western Blot test for Lyme, and all 10 bands were negative, which most doctors consider to be fairly definitive.  But, I understand that Lyme literate medical doctors (LLMDs) will also test for a number of related bacteria that are not detected by the Western Blot test.  I may need to visit an LLMD to rule out these other Lyme-like infections.

Of course, another possibility is that my "hot streaks" are mere a coincidences.  After all, I'm working with a sample size of only two.  For now, I plan to find an LLMD in my area, and if those tests are negative, consider treating mycoplasma with antibiotics.  Although, with my existing candida overgrowth, long term antibiotics must be a last resort.  The bad news is that there is only one doctor in the entire United States who promotes treatment of ME/CFS by attacking mycoplasma infections.  But the good news is, he happens to work in my zip code!

All of this just goes to show how complicated ME/CFS can be when you start dealing with opportunistic infections that take advantage of a weakened immune system.  You have to spend an enormous amount of time and energy tracking doctors who are knowledgeable about these infections. Even the rare ME/CFS specialist tends to focus on select groups of pathogens, such that, if you want to see "the big picture," you are left with no choice but to find multiple ME/CFS specialists.

Monday, April 16, 2012

Quotes about ME/CFS

I recently found this list of quotations about ME/CFS--mostly from leading researchers in the field--on another blog I follow: "Thoughts about ME."  It really paints of sobering picture of what we're dealing with, and I commend the blog's author, Jeanette, for compiling this diverse list.

Sunday, April 15, 2012

A little vindication with my GP

For several months I've been debating about whether to keep my GP (Dr. L), or try to find a doctor who is more familiar with ME/CFS.  While I'm already the patient of an ME/CFS specialist, it would be nice to also have a GP who is at least somewhat familiar with ME/CFS and its treatments.  For one reason, my specialist is an hour's drive away, and not all of my ME-related problems are worth the hour's drive.  Another reason is that I would like my GP to be able to coordinate my overall health care plan with my ME/CFS specialist -- and it is difficult to do that when the GP doesn't have a clue about ME/CFS.  But maybe the most important reason is that I wasn't even sure that my GP even believes in ME/CFS.  While I can certainly work with a doctor who doesn't understand ME (who does?), I can't work with a doctor who doesn't believe in it.

But on the other hand, I'm very reluctant to fire my family doctor after so many years.  She was my doctor well before I got ME/CFS, and she knows my medical history well.  She is also my my wife's GP.  But maybe most importantly, she is a good doctor and a good person.  So it would be a difficult decision if I decided to leave.

I came to the conclusion that I needed to have a frank and honest discussion with Dr. L to learn exactly where she stands with regard to ME/CFS.  Our conversations about CFS in the past have been vague and fleeting.  While she could clearly see that I was struggling with a number of difficult health issues, she simply and honestly admitted that she did not know how to explain them.  When I finally obtained a diagnosis of ME/CFS from another doctor and told Dr. L about it, she maintained a poker face.  I wasn't sure what to make of her reaction...or non-reaction.  Ever since then, we've simply treated my symptoms as stand-alone symptoms -- outside of the context of ME/CFS.

For the past two weeks, I've been battling a cold/flu and one of the worst sore throats I have ever experienced.  I hoped the sore throat would pass on its own, and for a while it improved. Until suddenly it got much worse.  I was once again forced to cry uncle and seek help from my GP (which I knew might mean anti-biotics -- something I've been trying to avoid because of my candida). This would be the perfect opportunity to have a frank discussion with Dr. L.

First, I let Dr. L examine my throat.  She was, not surprisingly, horrified by what she saw.  Although the results of the lab culture won't be back until Monday, she is certain it is another bacterial infection.  She wrote a prescription for antibiotics (which, by the way, cleared up my throat within 48 hours -- sweet relief!)

After the examination, I began the CFS conversation.  I began by pointing out that this was the 2nd time in two months, and the 5th time in the last 12 months that I've needed antibiotics to clear a throat infection.  Then we discussed some of the other chronic health issues that have arisen in the last year -- all of them documented in her records.  With my recent health history fresh in her mind, I brought out a copy of my recent blood work from Dr. W, and showed her only one result: the Natural Killer Cell activity test, showing me at 8 on a range of 8-170.

I explained that NKC activity is thought to be one of the key indicators of ME/CFS.  I quoted a study that found that about 65% of patients who've been diagnosed with ME/CFS have low NKC activity.  Then I explained what Dr. W had previously explained to me: that this low NKC activity is allowing infections to flourish -- both viral and bacterial.

During this conversation, I could see that the proverbial lightbulb went off in Dr. L's head.  She nodded enthusiastically and seemed genuinely interested.

At the end of this discussion, I said, "Regardless of whether we call it ME or CFS or whatever, I need to know that you understand that this is a chronic condition that may require ongoing treatment and may require you to work with Dr. W.  Are you on board with that?"

She said that she was, and I believed her.  So, it was a relief for me to finally know that Dr. L is a member of my team now and understands her role.  This may not be a permanent position -- I may reevaluate in 6 months or a year, but for now I'm relieved to be able to keep the GP that I've had for so many years.  And I like to think that I've done my small part in educating Dr. L, so that her next ME/CFS patient might have a slightly better experience.

Tuesday, April 10, 2012

List of Low Energy Activities for People with ME/CFS

As some of my recent posts reflect, I've been thinking about how to replace the activities I formerly enjoyed with new, lower-energy activities.  The idea is to, hopefully, not lose a beat in terms enjoying life in spite of ME.  As part of this journey, I asked other PWMEs from different message boards to name a few of their low-energy activities.  This post is a compilation of the various suggestions I received from other PWME's, intermixed with a few of my own.

I've included suggestions for both genders and various levels of activity.  Obviously, not all activities will be possible for all PWMEs.

*Listening to audio books (or reading if possible)
*Photography (mentioned often by PWMEs!)
*Learning a musical instrument
*Online role playing games (especially untimed, turn-based, strategy games)
*Watching movies/TV (especially with a specific goal, like watching all Best Picture winners, etc.)
*Blogging or keeping a journal
*Editing home movies
*Editing photos with Photoshop or other editing software
*Writing letters/emails to troops overseas, or a sick child
*Writing letters/emails/articles for ME/CFS activism
*Baking or cooking
*Light yoga or other stretching routines
*Tai Chi
*Knitting, sewing, crocheting
*Researching new interests online, or look up answers to nagging questions
*Jewelry making
*Participate in a book club (especially online)
*Low energy gardening (such as window box gardening)
*Explore music that is new to you (maybe, become an expert on a new genre)
*Create and design websites
*Crossword puzzles, sudoku
*Write short stories or a book
*Build a model from a kit (such as a model airplane, car, etc.)
*Learn a new language.
*Sciences: Amateur astronomy, birdwatching, plant/flower identification, etc.
*Genealogy - research your family's history
*Learn how to compose music using online software. Write a song
*Explore your hometown or the world's landmarks with Google Earth
*Participate in online fantasy sports
*Create a second, virtual you through online programs like Second Life or The Sims
*Take virtual tours of the worlds greatest art museums with Google Art Project
*Subscribe to and listen to Podcasts on subjects that pique your interest
*View online lectures on topics of interest on sites such as Ted Talks.
*Play games with others through Facebook
*Light travel, such as cruises

I appreciate all the suggestions I received, and I welcome more. I will update the list occasionally. I wanted to limit the list to activities that could be called "hobbies", so I left out things like daydreaming, taking a bath, cuddling and others that we tend to do anyway.  But if you suggested something that was left out, you'll see that I've probably included your other suggestions.  So thank you.

Personally, I've decided to resume my drawing hobby after many years.  While I paint occasionally, the process of mixing the paints and cleaning the brushes makes it a hassle to pursue consistently, regardless of one's level of health.  So last weekend I purchased a set of drawing supplies and really enjoyed my first foray back into drawing.  I wouldn't dare actually show anyone my drawings yet--as resoundingly mediocre as they are--but the point is I enjoy the process.  It is meditative and trains my eye to view the world in new ways.  

Sunday, April 8, 2012

How ME/CFS puts things into perspective

Ridiculously optimistic, bright-side post # 3

I woke up yesterday morning feeling surprisingly well.  If you don't count the raging sore throat, I'd rate my energy level at about 75%--which, coming in the middle of my latest crash, felt more like 175%.  It was early, about 7AM, which is my favorite time to go at the beach.  The light is at a low angle and the ocean surface is calm and glassy.  In a rare moment (these days) of spontaneity, I proposed that we (my wife, baby, and I) go to the beach.

Up until a certain point, the morning unfolded perfectly.  We had the beach to ourselves and I felt the best I'd felt in weeks.  We filmed my daughter as she crawled across the beach and, for the first time in her life, examined, with great wonder, handfuls of this strange pale powder called sand.

After about an hour of this, I decided that we'd better head for home.  I didn't want to push it.

Back in the car, I put the engine in reverse, looked over my shoulder and began backing the car just like I've done probably 10,000 times in my life.  We suddenly heard the sickening screech of metal on concrete.  I knew instantly what had happened.  I said to myself: "Remember that concrete post you saw near the driver's side fender when you pulled in? The one you told yourself to be careful of? just hit it."

Let me be clear that I was backing up very slowly at the time, so there was no issue of injuries to my family--thank God.  I don't think we even felt the contact so much as heard it.

My wife and I sprung from the car and inspected the damage.  It was as bad as I'd feared: the front left fender and bumper now have 2 foot long gouges; the type of damage that tends to draw people's eyes when they walk or drive past your car.

For the first ten minutes of the aftermath, I acted pretty much as I always would have in this scenario: angry and a little depressed.  In my mind, I broodingly reviewed the sequence of events that led up to the moment of the incident, wondering which details, if changed, would have avoided this outcome.

Before ME/CFS, I'm certain this period of anger would have lasted several days before gradually fading into a sort of resigned acceptance.  But I have a different perspective now.  By the time we reached home 5 minutes later, I'd already made my peace with the incident.  Unconsciously, I'd acknowledged that there are so many things that are so vastly more important that the aesthetics of my silly car.  I simply didn't allow the incident to ruin an otherwise perfect morning.

I doubt I would have been capable of this kind of self-control prior to ME.  It has truly changed my values and changed the way I react to certain situations. In a sense, I think it has matured me by about 30 years in the span of 9 months.

Tuesday, April 3, 2012

Changing how I enjoy nature

Continuing with my quasi philosophical exploration of happiness with ME/CFS, I've been discussing the issue with members of various message boards.  To that end, several people have recommended that I try to "enjoy nature," or variations on that theme.  Instinctively, I wanted to dismiss these suggestions on the assumption that one must be healthy and energetic to enjoy nature.  At least, that seems to be the only way I know how to relate to nature.  But people kept suggesting "nature" as a path to happiness, over and over - people who were obviously sick like me.   So I was forced reexamine my assumptions.

This afternoon, I experienced a small moment of realization.

This may seem obvious to others, but it wasn't to me: there are many different ways to commune with nature.  For 35 years, the only way I've known how to relate to nature is as a sort of 'conqueror' - for lack of a better term - by demonstrating some sort of mastery over it.  Most of my experiences with nature involved participation in various sports.  I harnessed waves on a surfboard.  I negotiated mountainsides on a snowboard, and I jogged through wooded areas.  On camping trips I chopped, I gathered, I built, and I kindled -- all very active ways to engage nature.  So ingrained was this way of thinking that I hadn't even considered other ways to enjoy nature.

I realize now that there's nothing stopping me from experiencing nature, for instance, as Monet did - as a palette of colors.   Or as Ansel Adams.  Or John Muir.  Or Emerson.  Or Thoreau. Or even Darwin.  Or countless others who made careers and reputations simply from the way in which they enjoyed nature...passively.  As observers.

The point is, my old manner of connecting with nature was a young man's manner.  I probably would have outgrown it in the next decade anyway.  As we grow order, our relationship with nature matures.  There's nothing preventing me from maturing now, a few years ahead of schedule.  So that's what I intend to do.  Who's path I'll follow, I'm not exactly sure yet, but I'll make sure I personalize it and make it my own.

Sunday, April 1, 2012

Rating the effectiveness of my treatments

[2/12/13 note:  This post is out of date and needs to be updated.  I will update it soon.]

In today's post, I take inventory of all the supplements, medications and other treatments I have taken or am taking for ME/CFS and categorize them according to how much, if at all, they have helped me.  Obviously, nothing so far has been a "cure," but several treatments have reduced or eliminated certain symptoms.  I categorize the treatments into 5 tiers based on my level of certainty that they have helped.

Tier 1 - Very High Certainty

While nothing is 100%, below are treatments that I am 95% or more certain have helped:

Low-Carb, No-Processed-Sugar Diet - Within a week of changing my diet, my GI tract issues resolved.  On the rare occasions that I have "slipped" from this diet, those symptoms have briefly returned.  Signs of Candida, such as white film on tongue, have also diminished.

T3 Thyroid Hormone - 37.5 mg/day.  T3 has solved my body temperature issues. Prior to taking T3, I frequently felt colder than I should under the circumstances,  especially my hands and feet.  That is no longer a concern.  My doctor insists that T3 also improves energy, but I have not been able to specifically attribute my increase in energy to T3.

ImmunoStim - 3 capsules 2x/day.  As soon as I began taking this supplement, I stopped experiencing regular sore throats, which formerly affected me at least once or twice per week.  It also halted my regular swollen glands in the neck and armpit.  Unfortunately, at $52 per bottle ImmunoStim is very expensive.

D-Ribose - 5 grams/2x per day.  The effect is subtle, but definitely noticeable.  I experience a bounce in energy during the hour or two after taking a dose.  I also believe that Ribose effectively eliminated my POTS symptoms, which plagued me early in this journey.  I still experience POTS, but only very minimally.

Vitamin D3 - 5-10,000 IU's day.  Supplementing D3 is supposed to help with shortness of breath (SOB).  My D3 levels originally tested low (in the 30's) when I was experiencing frequent SOB.  After taking 10,000 IU's for a couple of months, my D3 serum level was in the 70s (close to optimal), and I now only experience SOB rarely.  I now take a maintenance dose of 5,000 IU/day.

Magnesium - At one point, I thought that my ME/CFS may be evolving into Fibromyalgia as well.   I was experiencing muscle pains all over my body.  I began supplementing approximately 300-500mg/day of Magnesium and the symptoms abated.  I believe it also improved my sleep.

Melatonin. Improved my sleep significantly.

Body pillow - As a side sleeper, I believe this pillow has improved my sleep. It's a much more ergonomic way to sleep.  Whereas before the body pillow, I would turn over 5 or 6 times a night--waking up a little each time--now I fall asleep in one position and wake up in the same position 8 hours later.  The difference is remarkable.  

Tier 2 - Fairly Certain

These are treatments that I am fairly certain are responsible for the improvements I experienced at or near the time I began the treatments, but about which, for various reason, I am less certain of their benefits.  

B12 Protocol (Specifically Fredd's protocol).  I sense a small bump of energy after taking the active B12 lozenges and the dibencozide, but I have not yet experienced the system-wide healing (the repair of the methylation cycle) that is supposed to accompany these types of treatments.  I have only experimented with this treatment for approximately 2 months, so I may not have given it enough time.

NT Factor - 2 tablets 2x/day.  I noticed a slight improvement in energy levels and a decrease in the length of crashes after beginning this supplement.

Pau D'Arco tea - I've noticed that the white film on my tongue - which is indicative of candida - dissipates when I drink this tea regularly. 

Pregnenolone - 10-100mg/day.  My pregnenolone levels tested low - in the lowest 5% of the normal range.  When I took 100mg of pregnenolone/day, I noticed an improvement in mental clarity, memory, and sharpness.  While I am not comfortable taking 100 mg every day (I normally take only 10 mg per day),  I will occasionally take 100 mg when the need arises.

Potassium - 300-1200 mg/day depending on need.  Muscle twitching, muscle cramps and brain fog afflicted me for a period of time after I began supplementing B12.  Potassium alleviated these symptoms.

Yoga.  No other form of exercise was remotely helpful -- in fact, most others caused a crash.  But there's something about the light stretching of yoga that usually ensures I have a good energy day.  Oddly enough, I use my wife's pre-natal yoga videos, which are tailored for low-energy workouts.

Breathe Right nasal strips - Improves my sleep, but I only use these when my nose is slightly stuffy.

Tier 3 - Uncertain But Hopeful

I haven't noticed any specific improvement from these supplements, but I continue to take most of them because the science behind them is sound and because I believe they may, individually or collectively, have contributed to my overall improvement.

Pro-biotics 2x day

Zinc 23mg/day

Fish Oil, DHA/EPA  - 100 mg/day with occasional breaks 

Milk Thistle - 1260/mg, 2-3x day, with occasional breaks - to protect the liver.

Multivitamin powder - 1 scoop every morning.

Thymic protein - 1 packet every 4 hours when getting sick.

CoQ10 - 200 mg/day

Vitamin C - An additional 500mg/day (on top of multivitamin) when getting sick or crashing

Acetyl L-carnitine - 200 mg/day

Nystatin (for candida) - 1.5MU/day for 2 months.

Coconut Oil (also for candida) - Whenever a recipe calls for the use of oil, we substitute coconut oil.  Regardless of whether it actually works against candida (some people swear by it), it tastes better anyway.  The only downside is it is more expensive than vegetable oil. 

Tier 4 - Too soon to tell 

These are treatments that are, by nature, supposed to be long term treatments and which I only recently started.  Over time, these treatments will likely move up or down on this list.

Famciclovir - 500mg 2x/day

Low Dose Naltrexone (LDN)  Starting at 1.1mg and working up to 4.5 mg/day

Tier 5 - Possibly made me worse

Fluconozole (generic for Diflucan) - I experienced a sharp increase in the pain in my kidney areas right after starting this medication.  The kidney area pain dissipated immediately after stopping the medication.

VSL3 probiotics - My experience with VSL3 is written about here.