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

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

Thursday, March 12, 2015


Out of the blue I received the email below from my brother today.  It assesses my progress with ME/CFS.  Although it was meant to be funny (and it is), it is actually surprisingly accurate.

I came up with another barometer in assessing your progress with CFS. It assumes that there is negative correlation between the number of blogs you post and how you are generally feeling/progressing. For example, the higher # of blogs you post, the worse you feel over a given period of time. This assumption follows the belief that the more you are crashing, the more you are thinking about CFS and the more you are blogging about CFS. The opposite relationship should hold true as well. The less you are crashing, the less you are thinking about CFS and the less you are blogging about CFS.  
The obvious problem with this metric is that you have likely gotten tired of blogging over time regardless of how you are feeling. Therefore, the blogs naturally have become more infrequent with the passage of time. This measure ignores that issue and should only be referred to for general trends. Furthermore, it is not a linear relationship, i.e., ½ the amount of blogs does not mean that you are feeling 2X as good as baseline. 
Below are the # of blogs per year (please note I have not broken down monthly yet and 2011 and 2015 I have excluded because they are stub years): 
2012    139 blogs 
2013    75 blogs 
2014    43 blogs  
Two other contributing factors to above. 1) It was a slow day at work 2) I was inspired by reading some of your blog today. If one thing is clear, you want hard numbers and facts to back up CFS diagnosis, treatments and progress.  
Without knowing anything about CFS, this is the best I could come up with. The good news is my analysis reveals that you are indeed feeling better.

I have to say, his analysis is pretty accurate.  I do blog more when I'm feeling worse--up to a point. There's a point where I feel too sick to even blog, but I'm one of the lucky patients who rarely crosses that threshold.  And yes, I'm giving this the "Tracking" tag -- it's as good a measure as any other.

It also reminds me how lucky I am to have family members who generally "get it" and don't think ME/CFS is a joke. So many patients don't have that.

I'm anxiously awaiting the promised monthly breakdowns!

Wednesday, March 4, 2015

Wait, now I can drink coffee?

This disease is so odd, the way it evolves over time.  For the first three years of ME/CFS, I would crash if I drank coffee.  Even decaf.  And believe you me, I tried many many times, such is my love of coffee.  I kept thinking, "oh, the last time was a fluke.  I just happened to crash right after drinking coffee  It will be different this time."  It took about 8 to 10 experiments before I finally accepted that I couldn't drink coffee.

Recently, I've tried it again, starting with decaf, and all of a sudden I can drink it again without crashing.  I don't know if that means I should, but I just can't emphasize enough how nice it is to know that I can if I want... at least occasionally.

On the bad side of things, that aching in my kidneys that had gone away for so long is starting to come back again.

That's how it seems to go with ME/CFS for me ever since I got it.  One issue will resolve itself, but another will arise.  Often it feels like a zero sum game.

Sunday, February 15, 2015

Re-Ranking My Supplements

As I wrote about in my last post, I've been planning to rank all of my supplements and prescriptions in order of most effective to least effective.  After that, I plan to start cutting from the bottom until I notice a decline in my health.  The idea is to get down to only the supplements and prescriptions I absolutely need in order to maintain my current baseline health.  My new doctor supported his idea.

I had ranked by supplements once before, but it has been years since I've done so, and since then, many of my supplements have changed.  I've also had much more time to observe which supplements are clearly helpful and which supplements are more questionable.

Unlike last time, I'm not going to rate any "treatments" other than supplements and prescriptions -- in other words, nothing that fits into the category of lifestyle adjustments, like changes to diet or sleep habits.

I'm only including supplements that I take every day.  I am not including "as needed" supplements.  For instance, whenever I'm coming down with a cold, flu, or other mystery bug, I take my cold-buster regimen.  I'm not worried about cutting back on those supplements at this time.

The ranking is included on the attached Google Docs spreadsheet.  The supplements and prescriptions at the top of the list are the most effective and would be the last to be eliminated.

Saturday, February 7, 2015

I changed doctors. My new path....

For the past several years, I have regularly seen two doctors for ME/CFS.  One of them is a well-respected ME/CFS specialist.  (I call him Dr. C on this blog).  For the most part, he's everything you'd want in an ME/CFS doctor, except he has a pretty narrow focus and slim range of treatment options.  In other words, he's good at the few things he does.

The other doctor (Dr. W) is more of a generalist, but with a specific focus on all these complex maladies that baffle the average family doctor.  He speaks the language of ME/CFS, lyme, fibromyalgia and autoimmune diseases (although he's a little too focused on pushing his firm's private label supplements.)  I used Dr. W for exploring treatment options that Dr. C is simply unfamiliar with.

Over the past three years, under the dual care of Dr. C and Dr. W, I have slowly shown improvements, bit by bit.  I'm still far from my pre-ME/CFS self, but I am much more functional than before.  Of course, I realize that my situation could change at any time.  The "R" word is always a concern, so I try to enjoy every day of this for as long as it lasts.

Why I'm Switching

I've recently come to believe that I've gone as far as I can go with Dr. W.  He hasn't raised any new ideas in the past few appointments, and my improvements seem to have hit a plateau.  And I'm greedy, so I want more.

Plus, Dr. W's medical firm owns its own compounding pharmacy and private label supplements, and I can no longer ignore the inherent conflict of interest.  I don't appreciate having to wonder in the back of my mind: does he really have my best interests in mind when he recommends a supplement?  With every recommendation from Dr. W, I found myself double and triple checking his advice from other sources.  I'm tired of that.  And so I'm replacing him with Dr. M.

Like Dr. W, Dr. M is not an ME/CFS specialist per se, but the next best thing: a specialist in diseases like ME/CFS, lyme, fibro and autoimmune.  On her website, she refers to herself as an "integrative medicine" doctor (treating "body, mind and spirit"), which at first sounded a little too hippy-dippy for me.   I'm, quite frankly, not too interested in discussions of my "mind" or "spirit"... just western medicine, thank you.  But I scheduled a 10 minute interview with Dr. M before choosing her as my new doctor and she convinced me that she's intelligent and she knows her stuff.

The Appointment

Before the appointment, I had to fill out a thirty five page questionnaire and submit a 3-day food log of everything I ate and drank.  The nurse also asked me to bring in copies of my lab test results.  I had to laugh as I handed them a 130 page stack of labs.  "Have at it." 

To my surprise, by the time of me appointment, Dr. M had practically memorized my lab results.  She said she had "studied them the night before," which showed me that (a) she loves her job enough to work after-hours, and (2) she doesn't just skim a patient's history like most doctors.  Throughout the appointment, she struck me as a medical "geek," which is exactly what I want in my doctor.  

Dr. M had asked me to bring all of my supplements and prescriptions to the appointment (in their original bottles).  We went through them one-by-one and she gave me her opinion as to whether I should continue or discontinue each.  To my surprise, she actually supported my continued use at least half of them.

I told Dr. M that I have been planning to make a list of all my supplements and prescriptions in order of perceived efficacy.  Then I had planned to start cutting from the bottom of the list, eliminating one every two weeks until I started noticing a decline in my health.  She supported and encouraged this idea, and encouraged me to do it as a homework assignment before my next appointment.  So I'm going to incorporate her input into my list and then post my list on this blog later this month.  

The New Plan

For years, I've been meaning to "close the loop" on investigating whether lyme disease might be at the root of my health problems.  In my mind, the point would be to, mostly like, rule it out, so that I don't have to wonder anymore.  In my mind, I've never considered it likely for a number of reasons that are beyond the point of this post.

As it turns out, Dr. M is, among other things, a lyme literate medical doctor (LLMD).  She wants to investigate the possibility that a chronic bacterial infection like lyme, borrelia, bartonella, or babesia is at the root of my problems.  In her view, many patients who present with ME/CFS-type symptoms actually have a chronic bacterial infection at the root.  (She didn't actually say "many" but that's the way I interpreted her words.)

I told her I want something more than a clinical diagnosis of lyme before I consider lyme treatments. It's my understanding that many LLMDs will basically diagnose anything that moves with lyme disease.  I know that the ELISA and Western Blot blood tests for lyme are extremely flawed (way too insensitive to catch most cases of lyme), but I need to see something tangible.  At the same time, I'm wary of the IGeneX test, which has the opposite problem.  People criticize it for having too many false positives. (Some say it comes back positive 94% of the time, and that IGeneX has been or is being investigated by the FDA because of it!)  

Dr. M still says the IGeneX test is accurate but, in the end, we mutually decided to go with a sort of middle ground: the Stony Brook test for lyme.  I don't know anything about this test at the the moment, so I will have to research it and report back.  Dr. M made it sound as if it was more sensitive than ELISA and Western Blot, but less sensitive than IGeneX.   

I told doctor M that I'm going to approach this with a fair amount of skepticism.  She seemed to completely understand.  She said we'd take it step by step and she feels that, in time, she'll be able give me sufficient confidence in the results: positive or negative.  So I'm going to keep an open mind, but with a mix of healthy skepticism.  

Either way, positive or negative, she feels confident she'll be able to help me continue to improve. I like that she's confident but not cocky.   

My next appointment is in late March.  I'll keep updating on appointments with Dr. M...

Monday, January 12, 2015

2014 - My Health in Review

2014 saw significant improvement for me again.  Based on an average of all 365 days of my daily health chart, my daily health rating went up almost four percentage points from 2013. (And 2013 was over 5 points higher than 2012).  So clearly I'm headed in the right direction.  Of course, this all assumes that my ratings system stays consistent over time, (which I think it has--I use certain benchmarks to ensure that--but it's hard to be 100% certain.)

On my daily health chart, besides giving myself a daily overall health rating, I keep track of what I call my "big three" symptoms, each on a scale of 1-10:  (1) flu-like inflammation & fatigue, (2) air hunger / shortness of breath, and (3) kidney-area flank pain.  In 2014, only 26 days out of 365 recorded any flank pain whatsoever (7%), and no entry for flank pain was over a 4 out of 10.  

So when I created a new spreadsheet for my 2015 health chart, I eliminated the "flank pain" column.  Ah, but ME/CFS giveth and taketh away.  I had to replace that column with a column for prostate pain, as that seems to be my new nemesis.  Consistent with what many other ME/CFS patients have written online, it often seems as if the pain and inflammation associated with this disease simply migrates around the body, camping out in one area for a few years before mysteriously moving onto another area.

My 2013 year-end review, posted last January, said that maybe 2014 would be the year that I started to cut back on supplements and see which ones I truly need.  Well, that hasn't happened yet, for various reasons, but I'm renewing that goal for 2015.  I'll be starting work with a new doctor soon, and she has promised to help fine-tune my supplement routine.  

As I wrote about a few weeks ago, I quit Dr. Yasko's program after almost two years of experimentation.  I'm going to continue with a few "short route" methylation supplements for the time being, but have stopped experimenting with vitamin b12 and "long route" supplements.  They simply haven't worked out no matter how slowly I titrate, or how small a dose, or how long I gave myself to push past "start-up reactions".  I mean, yes, I can take a molecule of B12 and be OK, but any substantial dose whatsoever brings on nerve inflammation and brain fog.  So I'm done experimenting.  It doesn't seem that I really need methylation to make improvements right now, so why keep messing with it?   

Overall, 2014 saw a large return of functionality for me, in ways that just weren't possible a year or two ago.  I still have a long way to go, and I realize that the trend could reverse at any time, but for now I'm just trying to enjoy every day in which I don't feel like I did a few years ago.   

Thursday, January 8, 2015

On Celebrex, Pain, and My ****

[This post contains some detailed descriptions dealing with male anatomy.  If that bothers you, don't read on.]

Just after Christmas, my prostate pain came back.  Truthfully, it never went away, but for most of December it had become mild.  Then it stoked back up for no clear reason.

(I'm trying not to let this blog turn into "My Prostate Blog," but it's what's on my mind lately.  I noticed that my click-rate falls when I blog about this topic, probably because half the population has trouble relating.  But I don't blog for clicks anyway.)

I returned to my urologist and told him that we had no other choice but to do "the test."  As I wrote in previous posts, the best way to know if one's prostatitis is bacterial or non-bacterial is to have a doctor "massage" the prostate (yes, by insertion of a finger through the anus), and then test the fluid that's forced out.  (The fluid isn't semen, but one component of it.) 

From September to November I took a constant string of antibiotics based on my urologist's mere guess that my problem was bacterial.  Many doctors think nothing of prescribing long term antibioticsthey're apparently not up on the latest research about the importance of healthy gut flora. I had reluctantly gone along with antibiotics through the end of November, but when the pain came back, I'd had enough of the indeterminacy.  

My urologist kept delaying testing the prostate fluid because he said the process of forcing it out is painful and sometimes makes prostatitis worse.  I said I had to know before taking any more antibiotics.  I like information, not guesswork.  PLUS, if the test comes back positive, we would know exactly what type of bacteria we're dealing with and what type of antibiotic to use.  

So we did the test.  It was painful, but not excruciating.  In fact, I felt much better for about 2 or 3 days after the test -- something many prostatitis patients experience.  Apparently, draining some of the fluid in the prostate often eases the pain.

To help with the pain until the test results come back, the doctor prescribed Celebrex.  I've never tried it before, but so far it seems to be helping quite a bit.  As far as I can tell, Celebrex has no euphoric affect like Vicodin, Percocet, or Ultram (which is good when I need to work), but seems to reduce the inflammation a lot.  So far, it's been a good week for pain.

Thursday, December 25, 2014

You know you have ME/CFS when...

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