I now know what's causing my shortness of breath

I've been writing recently about my efforts to figure out what's causing my debilitating air hunger, which is always accompanied by post nasal drip (PND).  (Here and here.)  It comes and goes, but over the last two months or so, I've noticed that it has become more permanent.  I no longer get any days off -- it is there every day.  Now its only a question of severity.

I know now what's causing it: inflammatory cytokines.  I'm reasonably certain of that.

The pulmonologist found no problems with my lungs or heart.  I'm still pending an allergy evaluation (next week), but I doubt that will find anything.

Here's what I know:

Things that make it worse:

Exertion - Even walking now seems to trigger it.  A flight of stairs: definitely.

Coffee and other stimulants - The strange thing is, even decaffeinated coffee triggers it.  I believe that even the small amount of caffeine in decaf coffee is sufficient to make it worse.  Much worse actually.

My car - This is the one that doesn't quite fit with the others.  My first thought was, maybe I'm reacting to something in my car, particularly in the ventilation system.  Other times I've thought, maybe it's simply because every time I'm in my car, my presence there was preceded by exertion: gathering my things and walking to the car.  But I don't think that's the explanation.

Things that make it better:  

Nothing, except avoiding the things that make it worse.  I've tried Monolukast, inhalers, tea, mold and chemical avoidance, diet, anti-inflammatory drugs, Azelastine, and Flonase.  None of that makes a difference.

Therefore....

My conclusion is: This has to be inflammation triggered by cytokines.  We've ruled out nearly everything else.  Exertion and stimulants are two factors known to trigger an inflammatory response in people with ME/CFS. The car as a trigger is less easy to explain, but I feel there may be an environmental trigger to the inflammation as well.

I've been ill with ME/CFS for 4.5 years, generally the time frame when, as studies have shown, a person's cytokine profile changes.

Shortness of breath was a major symptom of my acute phase in 2011, but then it went away for the most part, for the next 3 years.  During that time, it was only sporadic, fairly rare, and not too severe when it did come.  It was not accompanied by PND like now.  I enjoyed a higher than average exertion tolerance compared to some other patients during that period.  Basically, I was able to do most day-to-day activities without fear of triggering a major crash.  (I dealt with a host of other problems, but hair-trigger SOB wasn't one of them.)  I wasn't like a normal person who could go running or play basketball, but I could climb a flight of stairs and feel OK generally.  That may be changing now.

Some people say that SOB in ME/CFS is not a matter of lung function or blood oxygen levels (my blood oxygen levels are fine) but rather the body's inability to use the oxygen efficiently.  I don't think that's the problem in my case because the SOB always gets better and worse in lock step with PND.  It makes more sense to me that inflammatory cytokines would be causing lung inflammation and at the same time, causing my sinuses to produce mucous.  The inefficient use of oxygen theory doesn't explain the PND.

Dr. Cheney's protocol - some thoughts

Health Rising has a 3-part article from a patient who blogged about Dr. Cheney's ME/CFS protocol - at least the version he's offering to this particular patient.  (Based on the accounts we read from his patients, Dr. Cheney's protocol always seems to be evolving as the good doctor searches for the ultimate combination of treatments.)

I'm posting a link to the 3-part article (below) because it dovetails with something I've been thinking about recently:  I must find a way to be more comprehensive and systematic with my ever evolving treatment plans.  I work with two doctors who want to go in different (not necessarily inconsistent) directions with my treatment plan.  I also use a handful of treatments that I've simply picked up from "the community."  With all this disparate input into my treatment regimen, I need to make sure that these treatments are all consistent with one another and that I've got all my bases covered.  

I think most of us recognize that ME/CFS is a multi-system disorder and that, in the absence of a cure, we end up treating each broken system as best we can.  But when treating different systems, seeing the "big picture" is one of the greatest challenges.  If you have doctor like Cheney who sort of specializes in seeing the big picture, then you're ahead.  But my two doctors have more narrow focuses, so the job of seeing the big picture falls to me.  

In short time, I'm going to post my new plan for making sure my treatments are consistent and all my "broken systems" are being addresses with at least one treatment that is consistently recognized as effective by ME/CFS doctors and the community.  Until that post, here is the 3 part article I referred to above....

Part 1 from Health Rising

Part 2 from Health Rising

Part 3 from Health Rising

2015 was first year my health regressed

                                                          Quantifying the Regression

Ever since I first became ill in 2011, I've been keeping track of my daily health rating on a chart.  I try to use certain benchmarks to ensure that equivalent level of health get the same rating from month to month and year to year.

At the end of each month, I calculate an average for the month, and and the end of each year, I calculate an average for the year.  I have steadily improved with each year from 2011 to 2014, with a particularly large improvement in the average of 2014 over 2013.  However, 2015 was the first year that had a lower average than the previous year.

Overall, this result isn't too surprising.  When I first became ill in 2011, it felt like there was nowhere to go but up.  (In reality, that's not completely true -- many of my fellow patients have shown me that I could be much worse.)  But the point is, the more one improves, the less room there is for additional improvement.  I knew that eventually I would have to, at the very least, level out or regress slightly.

The good news is that 2015 was still my second best year out of the 5 I've recorded, and the average was much closer to the 2014 high than the second highest year of 2013.  So this is all good news if I can keep from backsliding further.

Explaining the Regression

Explaining the regression is more difficult than quantifying it.  Until April, the year of 2015 was on pace to be an even better year than 2014.  March, 2015, was my best month ever.  I almost felt like a normal healthy person that month.  I was beginning to think that I would soon be considered "in remission."  (By some people's standards, I already am in remission, but not by mine.)

In April, my health started to regress.  Two things happened in or around that time frame.  One was that I began to cut back on some of my supplements, at the recommendation of my new doctor.  The other thing was that I had a stressful arbitration at work.  Is is possible the stress from the arbitration triggered the regression?  I doubt it, but it's a possibility.  

My symptoms seem to evolve slowly over time.  In 2014, my main non-PEM symptom was groin pain.  That issue was mostly resolved by early 2015.  In the second half of 2015, my issue became chronic shortness of breath (SOB) and post nasal drip (PND) (always together.)  Another explanation for the lower rating this year might be that I couldn't ignore the SOB as easily as the groin pain.  With the groin pain, I often wondered if it was even related to my illness.  Some days, even with significant groin pain, I rated my health highly.  SOB on the other hand, more directly affects one's daily activities, so it was more likely to reduce my daily rating significantly.  

I continue to explore an explanation for this SOB and PND through a pulmonologist.  I will update those results in the coming weeks.  

Where Do I Go From Here?

I feel perhaps more confused now than I have at any time since my "acute phase" in 2011.  I have a diagnoses of Lyme disease, which is questionable.  There are many different directions I could go from here, but I don't know exactly how to proceed.  In November, I started adding back in some of the supplements that I had cut out earlier in the year, particularly ImmunoStim (an immune modulator) and B Complex, among others.

My plan is to continue to try to confirm or rule out the Lyme diagnosis.  At the same time, I will try the herbal tinctures my doctor recommends.  The question is: how long do I give these Lyme treatments when I'm not totally certain Lyme is my problem?  To be honest, I don't have a plan for that right now, but hope to have one by the end of January.  In other words, my only plan right now is to make a better plan.

A New Phase of My Illness

Looking back at my daily healthy chart (averaged by month), I can see that I clearly hit a peak in March of this year.  That was my highest rated month since getting ME/CFS in June, 2011.  From June 2011 to March, 2015, I was steadily improving.  Naturally, there were setbacks, but the overall trend was improvement.  The improvement trend seems to have reversed itself after March.  It's only been about five months since then (and July was actually a pretty good month), so it may be too early to call this a reversal.  But I've also noticed that my symptoms have changed during that time.

The good news is that my symptoms have become more consistent and predictable.  The bad news is that they seem to be present more often than, for example, this time last year.  Since March, my main symptoms have been sinus issues, shortness of breath, and swollen lymph nodes in the neck.

For years, I've seen and read of other ME/CFS patients on message boards who dealt with sinus issues, and I thought, "how strange that I don't have any sinus issues."  Well, now I do.  Every day. Each day, for at a minimum of 2 to 3 hours, and sometimes all day, I get the sniffles.  Never a fully clogged nose - just the sniffles.  It's a consistent post-nasal drip.  It often dissipates as quickly as it arrives, for no apparent reason.  Netti pot and other nasal sprays have been ineffective.

The sniffles always come with shortness of breath (SOB).  The two symptoms are somehow intertwined.  With the shortness of breath, even though I am breathing normally, at a normal pace, it feels as if I'm not getting enough air.  If I stand in one place for more than a couple of minutes, the shortness of breath becomes worse.  It feels as if my circulatory system is struggling to get oxygen to all parts of my body.  Lying down flat, or simply moving around and improving circulation seems to help the condition, but not fully alleviate it.  This may be why, every time I have a blood test, my red blood cell count is sky high.  I have the red blood cell count of someone who lives at high altitude.  For a while, I dismiss this as a side effect of the Testosterone injections I was taking, but the condition continued even after I stopped taking Testosterone.  

SOB is not a new symptom for me at all.  It was one of my original "big three" symptoms.  But what is new is that (a) it now always comes with the sniffles, and (b) I get it every day.  For long periods of time, sometimes months at a time, SOB would be gone from my symptoms list.  Now it is an every day experience.

And the final symptoms is swollen lymph nodes.  This is another one I've had periodically in the past, but very rarely, and never for more than a couple weeks at a time.  Now I've had it every single day (to at least some degree) for the past two months.  So it feels like I've entered a new stage of the disease.  My doctor can clearly feel the swelling, and sometimes it's so prominent that it becomes uncomfortable to turn my neck.

But the good news is that the consistency of the first two symptoms (sinus and SOB) give me something to focus on.  For so long, the symptoms would change so frequently--from day to day, week to week, and month to month--that there was no point in me searching for answers based on symptoms.  I instead had to take a "macro view," simply searching for treatments to ME/CFS in general.  Now I wonder if I can be categorized in a subset of ME/CFS--if I can use the new consistency in my symptoms to focus on what, specifically, might be at the root of my problems. I still hold out hope sometimes that ME/CFS might be a misdiagnosis, and that the correct diagnosis might be something treatable.

Possible relapse - very frustrating

I keep a daily rating of my overall health, then I tabulate an average at the end of each month to track my progress.  March, 2015, was my best health month since I first became ill in the Summer of 2011. Even before I tabulated the average, I could tell March was going to be a blockbuster. I only had one or two days in the month when I didn't feel like I could accomplish about 90% of the things I needed to do (work, errands, child care) and maybe 80% of the things I wanted to do. Short of any cardiovascular exercise (which still induces a crash), I was, if not exactly "living large," living upper-medium.  

As March continued, I started wondering if I should consider myself "in remission."  I wasn't close to my pre-ME/CFS self, but I was wondering if I should nonetheless consider myself more-or-less in the category of "regular people."  I still regularly experienced symptoms like "air-hunger," swollen lymph nodes, and random inflammation, usually in the area of my kidneys and pelvic floor, and many others.  But over time, these symptoms had reduced in severity to the point where I felt I could live with them without too great of a reduction in quality of life. March was the pinnacle of this.

So naturally I went nuts during the month of March, despite my better judgement.  I started drinking coffee on a daily basis and running around doing errand after errand like I'd never heard of ME/CFS.  "What's this Myalgic Whatchamacallit you speak of?"  I let myself work later and later hours.  I even worked a weekend, despite reservations in the back of my mind.  It's easy to say now, "I should have known better not to push it so hard." But then again, as I improve, how will I know what my new limits are unless I test them?  Plus, who has the discipline not to fall back into old habits, i.e., being a regular person?  If you do, you're stronger-willed than me.  

On Friday, April 2, body-wide inflammation swept over me and I knew it was something significant.  It's only been 5 and a half days since then, so maybe it's too early to call it a relapse.  Sunday was a so-so day.  And even in my current state, I'm more functional than many patients.  It's nonetheless disappointing.  I keep holding out hope that this is just a "bug" (sick on sick), but it doesn't feel like it.  Unlike with a typical viral infection, the symptoms aren't localized to any particular area of my body.  They are everywhere: brain fog, swollen nodes, shortness of breath, kidneys inflamed, gums inflamed, cold hands and feet, weakness, pain in pelvic floor muscles.

Another possible explanation for this downturn is that I recently started experimenting with eliminating certain supplements and prescriptions from my daily routine.  So far I've cut out OraKidney, potassium, PS Complex, Valacyclovir, and B-complex With Metafolin.  I also cut Vitamin D-3 down from 10,000 IU per day to 5,000.  I cut back on Testosterone injections too because I thought it might be contributing to pain in my pelvic floor muscles.  Just to be safe, I'm going to start going back on those supplements until I get this figured out.  

It will be interesting to see how this one plays out...

In the meantime, I got a bunch of test results back from my new doctor.  I owe this blog an update on those results too...coming soon.  Short version: CD57 (a type of Natural Killer Cells) is pathetically low.

Blog-0-meter

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!

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.

[1/27/15 update: I am no longer able to drink coffee.  That only lasted about 5 months.]

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.

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.   

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

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

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

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

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

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

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

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

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

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

Why It's a Good Idea to Keep a Daily Health Log

About a year ago, I blogged about my daily health chart.  The short version: I use a Google Docs spreadsheet with my own custom categories (example).  Since then, I've often questioned whether it is worth the effort.  Remembering to log in daily and input data into a dozen fields is not easy.  I often lose my motivation and find myself playing catch up after a four or five day lapse.

Then I'm reminded why I do it.

For about 80% of my crashes, the cause is easy to determine.  Often my family is sick and I have the same symptoms.  Or I pushed too hard the day prior and I'm paying the price with PEM. 

It's those other 20% of crashes where the chart really helps.     

Starting yesterday, I hit an unexplained crash.  There were no symptoms of a cold or other infection. I hadn't exerted myself the day prior.  The only clues I had were the two main symptoms of this crash (every crash is a little different).  This crash had a particular type of severe brain fog (I can distinguish among types of brain fog) and actual leg pain, not just numbness, which is rare for me.  I knew this combination was familiar, but I couldn't remember what triggered it before.

I used the search function on the health chart to pull up other instances.  I discovered these symptoms happened twice before, although not since 2012.  In both prior instances, I had been experimenting with "Fredd's" methylation protocol, which calls for very high doses of active forms of vitamin B12.  A side of effect of this, as I learned at the time, is over-methylation which robs the body of potassium.  In both prior instances, I increased my potassium dosage and the crash dissipated.  I then remembered that I stopped taking potassium supplements about two weeks ago, thinking that perhaps I didn't need them anymore since I'm now taking a much lower dose of vitamin B12.

Following this hunch, I immediately went out and bought potassium tablets.  I took about 400mg in the parking lot of the supplement store.  It's now about 5 hours later and the brain fog is slowly lifting, while the leg pain eases away.  So it seems that even though I'm no longer taking high doses of B12, I still need to supplement potassium.

I think I'll keep charting....

[Update 3/24/14:  A week later I was proven right.  I received the results of a Urine Essential Elements test that I submitted to Dr. Yasko.  Basically, "low potassium" was written all over it.]

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. 

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.

Proof that the paleo diet is NOT dangerous

I now have personal proof that the paleo diet is not dangerous, as some claim.

I've been on a paleo diet for about a year and a half and it has completely eliminated my gut symptoms and has also cut down on Candida overgrowth in my intestines (as evidenced by Candida antibody tests.)  Incidentally, I have lost about 20 pounds since going on the paleo diet, but that was not my goal, and I would actually prefer to gain some of it back.

Since the paleo diet seems to be a trendy topic these days, I read a lot of articles on it: both pro and con.  Those who are against the paleo diet cite studies that show a correlation between red meat consumption and arterial blockage.  This always concerned me because the aforementioned correlation seems pretty solidly established in the medical literature, and has been for decades.  On the other hand, if you believe the pro-paleo crowd, red meat only contributes to arterial blockage when we eat pro-inflammatory grains, sugars, and dairy along with the meat, which creates the inflammation that allows those nasty lipids to stick.

Recently, while tracking down old medical records, I noticed that I had had a lipid panel performed in August, 2010 -- about a year before I went on the paleo diet.  So I realized that all I needed to do was have another lipid panel performed and compare the results.  Then I would have my answer as to whether paleo leads to dangerously high cholesterol levels.  I really hoped that wouldn't be the case because the diet has helped my ME/CFS symptoms so significantly.

Before we compare my before and after results, let's compare my typical daily diet before and after paleo.  Notice, I am not a strict paleo person, as I eat cheese in small quantities and a couple other minor things that some would consider cheating (olive oil, for instance).  While there are many different versions of "paleo," my main mantra is "absolutely no bread or processed sugar."  I stick to that religiously.

Before Paleo 

Breakfast:  Bagel, or cereal with lowfat milk, or a banana

Lunch:  Chicken burrito with corn chips, or a sandwich with potato salad; diet coke

Dinner:  Pasta or pizza or (occasionally) frozen TV dinner; salad; water.

Dessert:  Non-fat frozen yogurt, or cookies, or pie

After Paleo

Breakfast:  A whole large avocado, or 3 scrambled eggs, or full-fat goat milk yogurt with fresh berries.

Lunch:  Almost always a salad with chicken - olive oil for dressing; water.

Snack:  Walnuts or macadamias

Dinner:   Roast chicken or turkey, or grilled beef with steamed veggies; salad; water

Dessert:  Usually none; sometimes fresh berries

So the main thing to notice is that I eat a lot more fat and cholesterol now than I did when I had my first lipid panel 3 years ago.  And, because I came down with ME/CFS in June 2011, I am no longer able to do any cardiovascular exercise, whereas, at the time of my first lipid panel, I was doing 1 hour cardio workouts 1-3 times per week.  So traditional thinking would expect my lipid panel results to be much worse now, yet here are the results:

                                               Before Paleo         After Paleo       Reference Range

Total cholesterol                         182                        159                125-200 mg/dL

HDL (good) cholesterol               46                          46                 > or = 40 mg/dL

Triglycerides                               205                         86                  <150 mg/dL

LDL (bad) cholesterol                  95                          96                 <130 mg/dL (calc)

So the first thing to notice is that my trigylcerides were very high (out or range) before paleo, and now they are much improved.  Also, total cholesterol has come down from 182 to 159.  On the other hand, both HDL and LDL cholesterol have remained almost exactly the same, despite claims in some pro-paleo literature that those numbers would improve too.  But at least they haven't gone up, as some would have predicted.   

It appears the paleo advocates were correct that at least some of my lipid panel numbers would improve even though I'm consuming much more fat and cholesterol.  This leads me to believe that the paleo advocates probably are right when they state that grains, sugar, and casein (in dairy) make our arteries more "sticky", which causes the fats that we do eat to stick to our arterial walls.  As long as I cut out those pro-inflammatory foods, I can eat a fair amount of fat and get away with it.  

It seems to me that I could probably improve these numbers even more if I either went 100% strict on paleo (although I think I'm pretty close already) or by cutting down on red meat in favor of white meats.  Right now, I eat red meat 2 or 3 times a week.  I could easily cut that down to once per week and perhaps improve my numbers even further while continuing to adhere to the paleo diet that has helped me so much in other ways.  

My Daily Health Chart

Since I'm always interested in exchanging ideas and tip for managing this illness, I thought I'd share my daily chart.  It's my understanding that many of us track our daily progress in one form or another.  I've spoken with several other PWME's who keep similar charts.  Without it, it's hard to gauge which treatments may be helping, and which activities may cause crashes.

I'm always interested in improving my chart and sharing ideas, so I hope this will generate a discussion or exchange of ideas.

Before I post the link to my chart, a few notes:

This is not my actual chart, but a replica with the same format and categories.  The 5 day's worth of health information is just made up.  While I don't mind sharing most of my ME/CFS journey with the general public on this blog, I have to draw the line at this greater level of detail.

Google Documents:  When I first started, I kept a chart locally on my computer.  Around June of last year, someone recommended that I use Google Documents' spreadsheet format.  (I think it was Grayson or Baffled?)  I soon switched to Google Documents and never looked back.  I can now access my chart from any computer.  I don't have to take anything with me if I leave the house for a few days...as long as I'll have access to a computer.  I can also provide a link to my family and they can access it from their computer.

The spreadsheet format also allows me to create instant graphs from any two or more of my columns.  So, for instance, I can highlight the column rating my overall daily score, and the column rating my daily physical activity.  (I measure both on a scale of 1 to 10).  The program then instantly creates a graph that allows me to visually spot patterns and relationships between the two types of data.  This helps me see trends and causal relationships that I wouldn't have ordinarily noticed.  I can try to pinpoint where my crash threshold is.

Because of the graphing capabilities of the Google spreadsheet, I try to use numerical values, not words, whenever possible.  For instance, under the column "Work Day?", instead of writing a Y or N, for Yes or No, I use 1s and 0s.  This allows me to create a graph and observe, visually, how work impacts my overall daily health rating (not so far).

I'd love to hear what tips and tricks others have picked up.  My sample chart is linked below:

https://docs.google.com/spreadsheet/ccc?key=0AiPMEG7bO4TNdHpwQzdGbzNkR3JUcklqTzdnYzRNTHc

November was my best month

I just calculated my average daily health rating for the month of November and, surprisingly, it was my best month yet.  Before calculating, I guessed that November was not as good as October, especially given that I recorded one of my lowest one-day ratings of all time on the day I got the stomach flu. But I bounced back from the stomach flu quickly and November beat October by over 1.3 percentage points on my personal scale.  To me, this is more proof that the combination of treatments I've been on since late September is working.  Here's a link to my most recent post listing average monthly health ratings, which has now been updated (click here.)

Again, I realized that in the big scheme of things, two months of improvement may not mean much.  Maybe it's just temporary, but it sure is nice to know it's possible.

Some good news - health rating chart

I haven't blogged in about two weeks, which is by far the longest I've gone between posts since I started blogging about a year ago.  Part of the reason for the long hiatus is that I've been doing particularly well health-wise lately.  I haven't had a crash since late September!  That is also, by far, the longest no-crash streak I've had since getting sick.  Several times in the intervening weeks, I've felt as if a crash was starting (like today), but it never fully materialized.  I hope the one that feels like it's coming on now also turns out to be a false alarm.

I honestly don't know what to attribute this uptick in my health to.  Perhaps its just one of the unexplained cycles of CFS.  The nearest change in my routine was the addition of the far infrared sauna, so it's possible that the sauna is responsible for this improvement.

I haven't updated my monthly average health ratings chart in a while, so I will do that below by adding averages for the months of August, September, and October 2012.

Please don't read too much into the fact that my ratings seem high - they are not on a scale of 1 - 100, although that was my original intent.  My rating scale is shifted higher than most patients because I originally set my baseline too high and didn't give myself enough cushion at the top end.  100% for me would really be about 115 on my rating scale below. (For an explanation of why my rating scale is tilted higher than others' see here.)

[Chart below updated 10/1/13]

Month         Avg. Rating.     Notes             

Sept.          72.34                             

Oct.           77.16                  

Nov.           75.85               Started D-Ribose, Co-Q10, Acetyl-l carnitine, Vit. D3, and 

                                          vitamin powder

Dec.           80.39               Officially diagnosed; changed diet to low carb; added  

                                          ImmunoStim, NT 

                                          Factor, and pro-biotics
2011avg.   76.43

2012

Jan.            79.07               Added T3 thyroid, pregnenolone, and magnesium

Feb.           72.73               Added methylation protocol; crashed twice due to low   

                                          potassium and flu

Mar.           77.94               Added Famvir (antiviral) and Nystatin (for Candida); briefly 

                                          tried LDN

Apr.            75.50      

May            82.03              Started Equilibrant, titrating from 2 - 4 tablets per day.

June           78.52              Upped Equilibrant dosage to 5 tab/day; got a cold early in   

                                         month; ImmunoStim ran out and is on back order.

July            81.12              Upped Equilibrant dosage to 6 tab/day, plus back on 

                                         ImmunoStim

Aug.           76.90              Started using far infrared sauna

Sept.          79.80              Heavy Metal Detox

Oct.            84.10  
Nov.           85.43
Dec.           83.80

2012avg.  79.74

2013
Jan.           85.55              Increased thyroid to 62.5 and resumed taking T.
Feb.          85.52              Cold in later part of this month
Mar.          85.03              Two colds this month, with sore throat and swollen tongue
Apr.           83.43              Cold earlier in month, then major crash near end of month
May.          81.61             Cold and crash from April continued into May.
June          85.73            
July           85.10              Second half of month had a bug that lingered.
Aug.          88.48              Implemented Yasko's "short cut" supps.
Sept.         87.96              Implemented Yasko's long route supps.
Oct.          85.97               Started month with stomach flu and then had light colds on
                                        and off all month
Nov.          86.86               Moved houses toward end of month.  Packed most of month
                                        and prepared old house for renting.  Very active month.
                                        Took Doxy and Cipro.
Dec.          87.35              Groin pain this month probably prevented an even higher
                                         number
2013 Avg. 85.69

2014

Jan.          88.16               Very busy this month with post-move activities.  Brain fog
                                        started coming back during last week of month.  Had cold
                                        that week too.
Feb.         88.60               Post-move activity started to slow down a little this month,
                                        but both kids sick
Mar.         86.55               Brain fog and leg numbness returned.  Not sure why.
Apr.          88.90               Brain fog and leg numbness went away when I suspended                                            
                                       taking B12 & folate.  Continued to get colds from the kids

May         91.16               Can't explain the sudden increase this month, except that I                                            
                                       always seems to do better in the summer.

June        90.33                A nasty cough and chest cold early in the month kept this                                            
                                       month from being higher

July         90.13                Two minor bugs this month but ended strong
Aug.        89.64                Prostatitis this month brought down my average
Sept.       90.70                Prostatitis a little better; cold near the end of the month
Oct.         86.93                Prostatitis continues; have been on 60+ days of antibiotics,                                                                                   which may have set immune system back.
Nov.        88.06                Prostatitis improving
Dec.        90.80                Good month despite some prostatitis

2014 avg.89.41

2015

Jan.        87.19                Two colds this month.
Feb.        89.14                Continuing pain in groin
Mar.        93.58
Apr.         82.80               Major setback this month; possible cold
May        85.12                Continued setback; headaches and brain fog
June       89.96                Experimenting with A-L Complex this month
July         90.74
Aug.        86.80               Lots of sniffles and shortness of breath this month
Sept.       89.23               Went back on ImmunoStim toward end of month; lymph node
                                        swelling went away, but SOB and sniffles continue
Oct.        86.96               Caught a cold in middle of month; SOB continues to be major                                                                                problem
Nov.       88.26                Caught another cold toward end of month. SOB and post-
                                       nasal drip continue
Dec.       89.51  

2015avg.88.27    

2016

Jan.       85.58  
Feb.       86.86               Began month still trying to recover from PC experiment; end
                                      of month was better. Resumed taking Testosterone (cream)
                                      toward end of month
Mar.      85.03                Flu began on 3/14 and symptoms continued to end of month
Apr.      88.16                Still recovering from cold/cough that began in March.
May      90.64                PND and SOB still main symptom.
June     88.90              
July      87.80                Shingles set in toward end of the month
Aug.     87.79                Shingles almost all month, resolved by end of month
Sept.    86.23                General viral symptoms all month: sore kidneys, lymph nodes,
                                     etc.
Oct.      90.64                Back on Equilibrant (6/d), Immunostim (3/d), and B Complex.
Nov.     88.06                Was having a very good month until 11/14 when I caught a cold
Dec.     89.48                Cold still lingered early in the month.

2016avg.87.93

2017
Jan.     86.93                 Active EBV infection back.  High IgM antibodies.
Feb.     83.32                 Still with EBV, plus bad cold, plus arbitration stress
Mar.     84.06                 Was still getting over cold early in month, then had bad crash
                                      late in month (return of SOB, PND, and new type headache.)
Apr.     85.93                  Still active EBV.  Bad headache/brain fog and painful hands/
                                      fingers, improving some as the month went on.
May     87.06                 The month was decent until the 22 when I caught a bug.  Hand
                                     pain continues off and on, now joined by foot pain.
June    87.96                  One week trip out of state (cleaner air); supp holiday
July     87.67                First half of the month was phenomenal, but then crashed
Aug.    84.21                Possible re-flare of EBV in the first half of month
Sept.   84.80                Started high dose Valacyclovir, possible start up reactions
Oct.     84.64                Abdominal tenderness and gut problems getting worse
Nov.     87.34                Mostly a good month except for about 10 days of a cold, and
                                     continuing AT
Dec.    89.0                  First half of month was excellent (started back on PC and "short
                                     route" supplements.)  Flank pain and SIBO symptoms flared in
                                     second half

2017avg. 86.16

2018
Jan.     88.19             Kidney and groin pain was pretty bad but otherwise decent
                                  energy
Feb.     87.75             Caught a cold mid-late month.  SIBO symptoms improving on
                                  protocol, but not gone
Mar.    90.58           
Apr.     88.80
May     89.09             SIBO continues; Peripheral Neuropathy pops up again
June    85.96             Fell down this month with PN & swollen lymph nodes.
                                  Obviously battling some infection
July     89.67          
Aug.    92.03
Sept.   91.46
Oct.     91.45   
Nov.    92.03           
Dec.    89.41             A cold (or two) popped up this month 

2018avg.  89.71      Best year yet since ME onset

2019
Jan.    90.06            Slight dip in middle of the month due to cold-like symptoms; return
                                of PN symptoms in fingertips
Feb.    92.17            Other than a few mornings of vertigo, possibly my best month ever
Mar.    91.41         
Apr.     91.86            SIBO continues; experiments with OTC antihistamines for mast
                                 cells mostly failed
May    89.93             Small regression mostly due to very bad comeback of SIBO
                                 symptoms mid-month
June   87.93             Crashes at beginning and end of month
July    90.06             One crash of 2-3 days late in the month; exposure to sun seems
                                to help; SIBO improving after switching to Monash app for diet.
Aug.   93.54             Best month since tracking began (tied with March, 2015)
Sept.  90.03            Crashed mid-month that lasted rest of month.  Possible cold or                                        other bug.
Oct.    91.32 
Nov.   92.13       
Dec.   91.29         
2019avg.  91.02   

2020   

Jan.  89.54
Feb.  88.00              Caught a cold this month

[Outdated:] As you can see, October was my highest average yet [that comment is outdated as I continue to update this chart], and was over two full percentage points above my next highest month (May, 2012).

The biggest thing mitigating my excitement over this streak is the persistence of strange neuro symptoms, especially a slight trembling in my right hand.  It comes and goes, but it's scary when it's there.  

As the month of October went on, I found myself being more and more active.  The flip side of this is that whenever I start to get too active, I sometimes feel a crash coming on.  So far, I have been able to back off just in time and avoid the crash, but I have to really watch myself.   As I write this, I feel the last week of activity possibly catching up with me.  I plan to take it easy today and see if I can keep the no-crash streak alive.

The Problem with Getting Sick When You Have ME/CFS

I'm just now starting to get over a bug that I've been battling with for the last 11 days.  Looking back over my health chart for this year, it appears that this most recent bug is the 7th to hit me since the beginning of the calendar year.  We're in the 9th month.  That means I'm averaging one cold/flu bug every 1.2 months.  Mind you, this is on top of being regular ME/CFS-sick 100% of the time .... something I've heard referred to as being "sick on top of sick" (SOTOS).  Before I got ME/CFS, I typically caught a bug about once or twice a year at most.

Taking a conservative estimate, I'd say the symptoms for each of these illnesses lasted on average about 10 days.  That's 70 days of being SOTOS this year ... and we're only mid-way through September.  So far, there have been 274 calendar days this year.  That means I'm SOTOS 25% of time!  One out of every four days!  The numbers sound shocking...how could that be?  But when I look back on the past 8.5 months, it seems about right.

Whenever I try to explain ME/CFS to someone--which is rarely--I focus on the immune compromising aspect.  When I'm finished with this part of the explanation, the other person asks, "so, you get sick a lot."  I usually agree, and move on to my next point. But's that's not really the whole story, is it?  It's not just the frequency of infections.  It's really a triple threat: frequency, duration, and severity.

Regular ol' every day bugs that would have, in the past, barely fazed me, now knock me out of commission.  How do I know that these are just regular 'ol every day bugs?  Because my healthy wife and daughter get them too.  They're hardly affected at all...maybe a little runny nose or a slight cough, but they're no worse for the wear.  I, on the other hand, am knocked out with intense flu-like symptoms.  Regular colds become elevated to flu-like severity, and flus become a nightmare.  
Since getting ME/CFS, I've had sore throats so bad that I'd have never thought such pain in one's throat could have been possible.  It's the kind of pain that constantly demands your attention no matter how much you try to distract yourself.

I wonder sometimes if these serial illnesses are preventing me from making more progress toward remission.  What if every time I catch one of these bugs, I'm sent back to square one?  That's what it feels like sometimes.  I wonder, if I could somehow string together enough non-sick days in a row, would I slowly creep back toward regular health?

September Will Be Heart Rate Monitor Month

I've had a Polar FT4 heart rate monitor (HRM) for several weeks, but I haven't done much with it besides wear it occasionally for a few hours at a time and observe general patterns.  Nothing too formal.

After watching the Pacific Fatigue Lab's webinar last week, I've decided to devote the next month to giving the HRM a full test.  This will mean wearing it every day, all day, and stopping whatever I happen to be doing if my heart rate reaches a certain limit.  When my heart rate falls back within acceptable limits, I can resume activity, but only as long as it stays  below that limit.  In my case, I'm starting off the month with the limit being 105 beats per minutes.  That's six beats below my predicted AT based on the usual formula used for CFS patients.    

If needed, I will adjust it even lower.  At the end of the month, I'll review my monthly average and compare it to past monthly averages to see if the heart rate monitor helped improve my overall health rating and reduce the severity and frequency of crashes. 

Having worn the HRM for the last two days, I can already tell it's not going to easy getting used to wearing this thing -- at least the chest strap part of it.  I have a newfound respect for the discomfort women deal with in brassieres.   

Daily Health Rating Average - August   

Meanwhile, I've calculated my monthly average for the month of August and it was the lowest since before I started Equilibrant in April: 76.93.  This is not a surprise, as I pushed it WAY too hard in August, with several family obligations.  But September should be a very mellow month and I should be able to stay home and rest every weekend.  If the monitoring is working, I would hope to see a measurable increase in my health rating at the end of September.  Either way, I'll post the results here on my blog.  

I also note that I've now been keeping a daily health log for a full year.  It's incredible how quickly that year went by.  Before I got sick, I could have never imagined having the patience to record so many details of my daily life every single day.  It's just another example of how, having lost the health that I took for granted, I'll go to almost any length to try to get some of it back.  

Month         Avg. Rating.     Notes             

Sept.          72.34                             

Oct.           77.16                  

Nov.           75.85               Started D-Ribose, Co-Q10, Acetyl-l carnitine, Vit. D3, and 

                                          vitamin powder

Dec.           80.39               Officially diagnosed; changed diet to low carb; added  

                                          ImmunoStim, NT Factor, and pro-biotics

Jan.'12       79.07               Added T3 thyroid, pregnenolone, and magnesium

Feb.           72.73               Added methylation protocol; crashed twice due to low   

                                          potassium and flu

Mar.           77.94               Added Famvir (antiviral) and Nystatin (for Candida); briefly 

                                          tried LDN

Apr.            75.50      

May            82.03              Started Equilibrant, titrating from 2 - 4 tablets per day.

June           78.52              Upped Equilibrant dosage to 5 tab/day; got a cold early in   

                                         month; ImmunoStim ran out and is on back order.

July            81.12              Upped Equilibrant dosage to 6 tab/day, plus back on 

                                         ImmunoStim

Aug.           76.93               Stressful month, with two deaths in family; Travelled out of

                                         town twice and hosted a party at house

Updated monthly average chart - July

My July monthly rating is in, so I'm updating my monthly average chart below.  I was surprised to see that July was my second best month of all.  Perhaps I am slowly improving.  It's so hard to tell.  

Month         Avg. Rating.     Notes             

Sept.          72.34                             

Oct.           77.16                  

Nov.           75.85               Started D-Ribose, Co-Q10, Acetyl-l carnitine, Vit. D3, and 

                                          vitamin powder

Dec.           80.39               Officially diagnosed; changed diet to low carb; added  

                                          ImmunoStim, NT 

                                          Factor, and pro-biotics

Jan.            79.07               Added T3 thyroid, pregnenolone, and magnesium

Feb.           72.73               Added methylation protocol; crashed twice due to low   

                                          potassium and flu

Mar.           77.94               Added Famvir (antiviral) and Nystatin (for Candida); briefly 

                                          tried LDN

Apr.            75.50      

May            82.03              Started Equilibrant, titrating from 2 - 4 tablets per day.

June           78.52              Upped Equilibrant dosage to 5 tab/day; got a cold early in   

                                         month; ImmunoStim ran out and is on back order.

July            81.12              Upped Equilibrant dosage to 6 tab/day, plus back on 

                                         ImmunoStim