Some excellent crib notes on Osler's Web

Ever since, I got ME/CFS, I started diving into the research and trying to learn as much about it as I could — like many of us do.  Mostly I read internet sources, but I've also read a handful of books, which I've reviewed here on this blog.

The one book that I've always intended to read but haven't yet gotten around to is Osler's Web, by Hillary Johnson.  My understanding is that the book is basically a history book of how this disease came to be so utterly cursed and ignored.  (It is a bit outdated at this time—published in 1996—so the point of reading it would be more to understand "our" past, not to get current information).  The book was apparently written by a journalist who dug deep into the the background of government handling of this disease and produced this book which could almost be considered in the muckraking tradition of Upton Sinclair and others.  Many patients swear that Osler's Web is a "must read" in order to really understand this disease.

Two things have held me back from reading it so far.  One:  It's 720 pages—Ugh.  Two: it sounds like it would make me very angry, and that's not fun.

I still intend to read it one of these days, but in the mean time, the best summary of it that I've read actually comes from an autism website.  If  you're interested in reading a good crib notes summary of Osler's Web, you could do worse than this one: http://www.ageofautism.com/2010/07/oslers-web-a-prequel-to-autism.html

Article on MTHFR mutation prevalence in ME/CFS patients

Since I have found a modest amount of success so far with methylation treatment (nothing dramatic, but noticeable) I'm always interested in articles from sources other than just Dr. Yasko about it.  Here's an interesting one from a website called MTHFRliving.com.

http://mthfrliving.com/health-conditions/chronic

If you haven't yet, you REALLY need to check out HealClick.com

[Edit: post removed]

My Health - 2013 In Review

I keep a daily health chart where I give my health an overall daily rating on scale from 0 to 100%, where 0 is dead and 100% is how I felt on my absolute worst day before getting ME/CFS.  (So far I haven't cracked 100 since getting ME/CFS).  At the end of each month I average my scores to track my progress from month to month, and I do the same from year to year.  I have a pretty good system of benchmarks to ensure that my rating system stays objective and doesn't skew over time.

The year 2013 was about five percentage points higher than 2012.  This is an enormous improvement for me.  

Of course the trick is to determine what caused this improvement.  That is a very difficult and complex question.  In many ways, the answer is unknowable given all of the treatments I've tried.  I can only offer my best guesses based on intuition and daily charting. But there's always the possibility (although I believe, slight) that I would have improved the same amount had I simply sat back and waited. 

I started Equilibrant in mid-2012 and have continued at a dosage of 6 tablets per day throughout 2013. I believe that it has continued to help me improve.  I have not yet experimented with backing off the dosage, but there have been days where I have forgotten to take Equilibrant and felt (I believe) worse because of it.

Second, starting in about March or April I charged aggressively into Amy Yasko's full methylation protocol.  I submitted urine testing, I analyzed my genetic results, and I was determined to give the protocol every possible chance to reveal if there was anything to the hype.  At the same time I tried to listen to and consider the critics.  

For those who are familiar with Yasko's protocol, she recommends a seemingly ridiculous number of supplements and they can be quite expensive, so I didn't take this decision lightly.  After starting the program, I quickly came to believe that the RNA supplements were ineffective for me so I stopped using them.  Although I started the program in March, it wasn't until October that I had all of Yasko's recommended supplements fully implemented—a seven month process.

I took a significant step up in baseline between July and August (about 3 percentage points) and I have more-or-less sustained that improvement since.  This improvement coincided roughly with adding Yasko's "short cut" supplements—before I even got to the methylfolate and vitamin B12 supplements—the cornerstones of methylation treatment.  So I believe there may have been a connection between Yasko's protocol and my mid-year improvement.  (For more on "short cut" supplements, see mid-way down this post. In summary, I believe it was the PS/pc/pe Complex that may have been responsible for the improvement.) 

More significantly, my brain fog went away almost completely at around that time and has stayed away since.  The improvement has been remarkable. After spending 2011 and 2012 mostly brain fog-free, I started to get brain fog on a daily basis in roughly the first half of 2013.  Although my energy levels and flu-like symptoms had improved, I was concerned that I had simply traded them for brain fog, which is maybe worse. 

Well, for whatever reason, and maybe it was the Yasko program, the brain fog is almost completely eradicated.  I still get it very mildly on occasion and for no apparent reason, but it is basically a non-factor since about August of this year.  In 2014 I plan to cut back further on some of the Yasko supplements and see if the brain fog stays away.

The other major change I made in 2013 was that I switched from testosterone cream to testosterone injections (self-administered) in early April.  While this may have contributed to the improvement, there was a 4 month gap between the start of the injections and the improvement, which makes is a little less clear.

I also moved residences in November and noticed that I have slept better over the past month and seem to have a little more energy in the mornings.  I'm wondering now if my old house may have had environmental "issues" that were bringing me down.  I'll report back if this improvement continues.  

I don't mean to give the impression that 2013 was all roses.  My weak immune system continues to ensure that I contract raging sore throats and a swollen tongue at least 4 times a year.  Despite my best efforts, I couldn't avoid having to take antibiotics twice this year.  I'm working now on restoring my gut flora yet again with a probiotics regimen.  

Additionally, I welcomed a new symptom in the Fall of this year—crippling groin pain and prostatitis—bacterial infection of the prostate. It's unclear if this is related to ME/CFS, but I suspect my weak immune system played a role.  I am feeling better "there" now but my urologist says that once infected, I will always be more susceptible to repeat infections.   

Looking forward to 2014, this may be the year that I begin to actually reduce the number of supplements I take in order to determine which ones have actually contributed to my improvement and which ones may be less effective. 

Thanks as always for reading, and I wish you all improved health in 2014. 

My experience with acupuncture as a treatment for ME/CFS

I've been interested in acupuncture as a possible treatment for ME/CFS for about a year and half—ever since reading an article linked in my prior blog post about acupuncture being a potential Th1 immune booster.  Nobody would expect acupuncture to cure them of ME/CFS, but I figured it was possible that acupuncture could provide marginal improvements in immunity and energy and potentially halt a crash. But every time I wanted to try it in the past, there was always another treatment that seemed like a higher priority.  Then last week I started to feel a mini-crash coming on so I finally scheduled an appointment with a local acupuncturist.

Expectations

One the one hand, I've known at least two other PWMEs who tried acupuncture and neither of them stuck with it.  The first said she felt only a tiny bit better after each session, but it wasn't enough to continue paying for such an expensive treatment (usually not covered by insurance).  The second actually reported that acupuncture made her worse, and that it brought on an insatiable hunger.

On the other hand, there was the article linked above (which admittedly only dealt with electro-acupuncture... on mice).  So I had two anecdotal stories and a vague article about a study on mice.  I would just have to try it myself to know for sure.  For science!

Finding an Acupuncturist

I was determined to hire the best acupuncturist in my area, so I took to the internet and Yelp until I was satisfied that I had found the best.  Frankly, I really wanted my acupuncturist to be Asian, trained in Asia, since acupuncture is a Chinese art/science.  The person I identified as "the best" was actually Japanese (not Chinese) but somehow I felt that that was better than a random Caucasian.  She had a very quintessential Japanese female name.  I'll call her Midori.*

Preparation

Midori's office is in the same medical building as my GP.  I arrived 15 minutes early to fill out all the usual paperwork as with any first doctor appointment.  Of the 10 or 12 boxes that I could check as "reasons for your visit," the top was Chronic Fatigue Syndrome.  (They weren't alphabetized)  Another choice said, "Immunity."  I took this as a good sign.   

The receptionist determined that my insurance would cover $30 of the $85 fee, so I settled up the difference and was the lead to a room that was a cross between a doctor's exam room and a day spa massage room.  Actually it was more like an exam room in most respects, except it had a massage table instead of an exam table, and the room was filled with the sounds of some dreamy new age music ala a day spa.

Midori came in shortly after and asked me a series of health-related questions for about 10 minutes. What's your diet like?  Do you eat fish regularly? Do you exercise?  Her Japanese-American accent was quite thick, so we had to repeat things for each other occasionally to make sure there were no unfortunate misunderstandings.  Annoyingly, she referred to my condition several times as simply "chronic fatigue" and asked if I "just want more energy."  I gently refocused the discussion to my immune system deficiencies and emphasized immune boosting and inflammation reduction as the goal of treatment. She seemed to understand.  She said that I should drink at least one glass of water with lemon in it each day—that this is good for my liver, which in turn is good for immunity.

At the end of this interview, Midori said that she would focus on total body circulation and flow of qi (pronounced 'chi'), both of which are good for immunity.  

"Tons of Needle All Over" Me

Unlike a massage, there is apparently no removing of the pants in acupuncture.  I learned this only after removing my pants and being instructed to put them back on.  I only had to remove my shirt and roll up my pant legs to the calves and I was good to go.  I laid face down on the table first. Midori pinched and poked me on my neck and my ankles, perhaps taking stock of my qi.  She said that the needles are thinner than the width of a human hair and that I wouldn't feel much at all.

As I lay with my face in the massage table's padded face-hole, Midori inserted two needles into the back of my neck.  She was right, I hardly felt a thing.  I had to take her word for it that there were, in fact, needles in me.  Four or five more needles were inserted into my back, and two more in each foot/ankle area.  

Midori said in an easy, sleepy tone, "there are now tons of needles all over your body. I  will come back in ten minutes."  

In ten minutes, Midori came back and removed all the back needles and instructed me to turn over onto my back. This time, she put the needles in my hands, arms, chest, and feet, culminating with a single needle at the very top of my head.  Again she said the thing about "tons of needles." I smiled at the mental image.  And then she left the room again for another ten minutes.

This time I had a chance to look at the needles.  Unlike in pictures and TV, the needles didn't stick straight out into the air.  They hung curled over and limp from their insertion points.  

I tried to determine if I felt any different, but Midori had placed a portable heat lamp over me so it was impossible to tell whether I was feeling the mysterious qi or just a GE lightbulb.  I felt like I was a fast food meal.  

Midori soon reentered the room, removed the needles and told me to put the rest of my clothes back on. Back in the reception area she told me that I needed more work and that she'd like to see me next week.  I said I'd think about it.  Her parting advice was to drink plenty of water to flush out my system now that all the toxins had been dislodged into circulation.

The After Effects

As I walked out of the building and toward my car, I assessed how I felt. Quite frankly, I felt that the whole experience was a "poor man's" massage.  I felt the familiar boost of calming energy that one gets after a professional massage, but only about 50-75% of it.  I could tell that my circulation was better and my head was clearer, but again, I couldn't help feeling that it wasn't quite as effective as a one-hour Swedish.  And just as after a massage, I felt intense thirst.  I'm convinced that both massage and acupuncture work in similar ways—that somehow improved circulation is the point of both, and that both lead to unquenchable thirst.  In different degrees. 

I also noticed that the glands in my neck felt swollen, whereas they weren't before the treatment.  As the day went on, this evolved into the tongue swelling that I often get when my glands get particularly swollen.  I felt that the treatment may have stimulated my immune system, but perhaps stimulated the wrong side of it.  This felt more like Th2 activation than Th1.

Now, two days post-treatment, I haven't noticed much positive improvement.  If anything, the treatment had more undesirable affects (gland swelling) than benefits (slight increase in energy on the day of treatment.)  I'm glad I tried it and satisfied my curiosity, but I don't think I'll be patronizing acupuncture again.  My sense from Yelp reviews is that acupuncture works better for people who have pain issues. In the future, if I feel like I really need to part with $85, I'll get a massage instead.

*not her real name

What fills me with inexplicable rage (ME/CFS related)

Before ME/CFS, there were only two things that filled me with irrational anger and irritability: The first was any scraping of a metal bowl (such as from a mixer) with a metal spoon. Metal on metal....I just hate it.

The second was someone chewing cereal or an apple loudly, especially with their mouth open.

Now thanks to ME, I have a third one, and it's when people have sneezing or coughing fits. I just want to yell at them, "Get ahold of yourself, Typhoid Mary!"

I'm trying so hard to not let my anger at my nice coworker show, but I'm afraid she knows I loathe her right now.  You should see her -- she looks like she just wrestled a bear in the arctic; hair all a-mess and nose as red as a wino's.  Why is she here?

It's bad enough to expose fully healthy co-workers to your germ-y hands and foul air, but to do it to immuno-compromised people?  That's beyond the pale.  And I don't mean to just pick on her -- there are a ton of people walking around in public this time of year like the goddamn walking dead.  *Sigh* I shouldn't be too hard on her, she's a good person just trying to make a living for her family.  The point is more about me -- the changes that ME/CFS has brought over me and my outlook on certain things.     

(Side note: I had to add the "ME/CFS related" parenthetical to my title because I know from past experience that if my title is not ME/CFS related, I start getting unwelcome visits from all over the internet.  And let's just say I don't want to meet the people who search "inexplicable rage.")

Some pretty big news from Dr. C

I had my latest appointment with Dr. C last Friday.  One of the great things about Dr. C is that he never limits our discussion to my personal struggle with ME/CFS.  He always broadens the discussion into the latest developments in ME/CFS research.  I never have to initiate this broader discussion—he brings it up on his own.  Since I assume he does this with all patients, one wonders how he doesn't drive himself insane having the same conversation with patients after patient all day long.  I can only assume that he recognizes how starved we as patients are for the latest research news and takes pity on us.  He never makes these discussions feel rushed—it's always as if we're sitting in a coffee shop chatting as friends.

                                                                     Dr. Lipkin's Findings

The discussion started with the major findings of Dr. Ian Lipkin that made headlines back in September. (Here's a link to a Phoenix Rising article about those findings.)  Dr. C always has always heaped effusive priase for the work of his fellow ME/CFS researchers, as he did with Dr. Lipkin.  Dr. C pointed out, however, that many people have misunderstood the significance of Lipkin's research, believing that a viral cause has all but been ruled out.  To put Lipkin's research into better context, Dr. C pointed out that not only was Lipkin's virus hunt limited to the blood, it was limited to blood plasma.  Dr. Lipkin did not look for viruses in the white blood cells of ME/CFS patients, which is a better place to look for possible ME/CFS-causing viruses in the blood, according to Dr. C.

When Dr. C did his own virus hunt in the blood of ME/CFS patients years ago, he found enteroviruses in approximately 60% of patients' white blood cells, as opposed to only 2 in 20 in the plasma.  Admittedly, he used a small sample size.

As many people know, Dr. C firmly believes that the place to hunt for any viral cause of ME/CFS (which he postulates is a enteroviruses) is in the body's tissues.  Dr. C has always focused on biopsies of the gut, partly because the gut is the easiest internal organ from which to obtain a biopsy.

Getting back to Dr. Lipkin for a moment, Dr. C noted that Lipkin's next big endeavor is to look for evidence of viral infection in the stool samples of ME/CFS  patients.  According to Dr. C however, this is not likely to be fruitful.  If looking for viruses in the blood is like looking for a needle in a haystack, looking for viruses in stool samples is like looking for a needle in a haystack that is 10x as large.  (He said all this while heaping praise on Dr. Lipkin, so while it is clear that while Dr. C prefers to pursue other theories, the has the utmost respect for Dr. Lipkin.)  At the same time he said, "I certainly have a number of questions for him [Dr. Lipkin] at the March conference"—referring to the upcoming IACSF/ME conference in San Francisco.

Finally, Dr. C also mentioned that Lipkin's next big treatment experiment will be with cytokine blocking drugs, noting that some of Lipkin's recent research has confirmed the "cytokine storm" that many of us believe is a cause of our rampant inflammation.  Without sounding too contrarian, Dr. C again stated that he would be hesitant about recommending cytokine treatment to any of his other patients until further research.

He gave the example of one of his patients who had terrible neck stiffness due to a cytokine storm concentrated in that area.  This patient was treated with an experimental cytokine blocking medicine by another doctor, and two months into the treatment the patient began to have terrible neurological problems, including major involuntary spasms all over his body and the gradual loss of all speech. The patient can only speak now through a computer, ala Steven Hawking.  Dr. C is now attempting to help recover the young man's speech through IVIG treatment.  I asked if Dr. C thought these symptoms were side affects of the cytokine blocking drug and he said, "we think so."

New Antiviral Drugs

Dr. C has long discussed the possibly that certain antiviral drugs "in the pipeline" would help treat ME/CFS.  He states that any new antiviral drug gives hope to our community.  In January, 2014, a drug company is expected to launch a new Hepatitis C antiviral drug that Dr. C plans to test on ME/CFS patients. The drug apparently costs, not joke, about $30,000 per month!  No word on how or by whom this experiment would be paid for.

Later in 2014, two other drug companies are expected to drop competing Hep C antivirals.  This should introduce competition in to the market and hopefully give ME/CFS patients two additional chances to find an effective antiviral.  

Other than those three impending Hep C drugs, Dr. C said there is no other "chatter" about additional antiviral drugs in the pipeline. But he noted that this lack of chatter may be because drug companies like to keep such projects secret for fear of being ripped off and beat to the marketplace by competitors.  

                                                                Dr. C's New Findings

Not to bury the lead but.... Dr. C says that he obtained tissues samples from a recent patient of his who, tragically, committed suicide.  The family was kind enough to donate the body to Dr. C's research. (Side note: I'm trying to walk a fine line here because Dr. C states that his findings will be announced at the March IACFS conference and not before then, so I don't want to steal his thunder).  All I can reveal at this point is that Dr. C found a raging enterovirus infection all throughout a major, very critical organ from this deceased patient's body.  (I'm sorry, I can't reveal the organ).  Dr. C is certain that it is the same enterovirus he has been finding in the linings of the guts of his patients for years.  (Although, he noted that this enterovirus was detected by the protein that it produces, not directly by sequencing the virus, which is very expensive.  When and if he ever obtains the funds, he would like to sequence the virus from his organ sample and conclusively prove that it is the same enterovirus from the gut.)

My Revised Game Plan

To quickly summarize my past work with Dr. C: I had success and continue to have success with his oxymatrine treatment called by the brand name Equilibrant.  This helped me improve by about 10%.  But none of Dr. C's additional pharmacological treatments did anything for me, and some had bad side affects.  I've tried Rifampin, Epivir, Amantadine, and inosine among others.

After some discussion, we decided to revisit some of the failed treatments to confirm that the side affects I thought I experienced were truly from the drugs and not from, say, a crash.  So the plan is to, in addition to continuing Equilibrant, take both inosine and Epivir together in combination.  We'll see if that makes a difference this time.

Possible Sad News

Toward the end of the appointment, in the context of another discussion, Dr. C stated that he would like to move on to other areas of research besides ME/CFS.  Then he asked rhetorically, "but then who would take care of my patients? You see, for diseases like HIV where the treatment routine is so well established and understood, a nurse practitioner can be a patient's sole medical provider.  But with this disease, my patients need me to treat them individually."  So it was unclear if Dr. C would actually move on from ME/CFS, or if he was simply expressing the desire to.  

I told him that we need him and that he is practically a celebrity in certain circles and why give that up? I'm not sure it helped...