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

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

Friday, November 30, 2012

Attended a "meetup" with other patients

I went to my first "meetup" with other patients this Wednesday and it turned out to be better than I expected.  It was a local support group that I found online back in March. I had been planning on attending one of their monthly meetings ever since, but something always seemed to come up -- often a crash -- that made it difficult to attend.  A couple of times, I learned in advance that the group had scheduled a guest speaker and I simply wasn't interested in listening to an hour-long commercial by some local "health consultant."  Finally, the stars aligned for this week's meeting.

I have to admit, I had some apprehensions about attending a support group.  Say the words "support group" and I imagine of a bunch of whiny people exchanging trite, new-age platitudes. But it wasn't like that at all.

The meeting was held in a coffee shop and the group took over its own seating section.  There was a brief round of formal introductions, but mostly it was free-form a cocktail party, only seated...and no booze.  I found out there are some interesting and wise people in the group whose experiences make mine look like a walk in the park.  My only regret was that I had to leave after an hour and a half.  I could have easily stayed for much longer.

It's refreshing to speak with other people who know exactly what you're talking about; who speak the same language and know about the same doctors and treatments.  Meeting people online has been great, but in-person meetings add a whole new dimension where one can actually look another in the eye and communicate with tone and expression.  The experience also made me feel less like a statistical anomaly knowing that there were as many other CFS/FM patients living nearby.

Now it's really game on.  The ice is broken and I'm looking forward to going to more meetings and networking with actual real life CFS patients.

Thursday, November 29, 2012

Another Doctor Recommends More Thyroid & Testosterone

I met with a sleep specialist yesterday.  It was an appointment I had made over six months ago when sleep disturbances were a more significant concern.  Since that time, I've improved my sleep through the correct use of small amounts of melatonin, and by changing my nighttime habits (reduced use of electronics within two hours of bedtime, etc.)  The sauna has also helped.  Nevertheless, I decided to keep the appointment with the sleep specialist in case he could contribute any other useful advice.

As it turns out, he did -- but it didn't have anything to do with sleep.

As the sleep specialist (Dr. B) was reviewing my labs and health history, he suddenly looked up from the papers and rather emphatically told me that I should be taking more T3 thyroid hormone.  I've mentioned here before that Dr. W (one of my CFS doctors) also wants me to increase my T3 intake.  I've been resistant however, because I'm afraid of developing a dependence and not being able to reverse course if/when my ME/CFS goes into remission.  I expressed this concern to Dr. B.

Dr. B said, very frankly, that I need to accept that when someone develops hypothyroidism, they don't come back from it.  This applies particularly to people who become hypothyroid from CFS. He said that while I may achieve some sense of "remission" from the flu-like symptoms, I will always have hypothyroid symptoms unless I supplement; that I will probably need to supplement for life unless I accept feeling constantly sluggish.  He tried to impress upon me the normalcy of lifelong T3 supplementation, saying that far more people do than I would ever suspect. Dr. B told me to tell Dr. W to increase my T3 intake to "1 grain" (I'm guessing that means 100 mcg, as opposed to the 50 I'm currently taking.)

I found this interesting because it is also what Dr. W has been telling me for 6 months.  I was reluctant to take Dr. W's advice for the reasons I stated above.  I felt that once the cold hands/feet and body temperature issues were corrected, which happened at the 50 mcg dosage, there was no need to go higher.

This advice was suddenly much easier to accept coming from Dr. B for two reasons.  First, it's simply more compelling when you hear the same advice from multiple doctors.  It helped appease the skeptic in me that quietly wondered if Dr. W could be somewhat of a drug pusher.  The second reason is that Dr. B has no financial incentive to recommend T3.  He knew that any additional T3 I took would be supplied by Dr. W's office.  This this again helped sooth my skepticism.

Another thing that struck me is that both Dr. B and Dr. W have both told me the same thing, almost verbatim:  That most ME/CFS patients who introduce T3 by gradually increasing the dosage find that they surpass a threshold where they suddenly feel much better.  It's as if, to use a car analogy, the body's engine finally turns over and revs into gear at a certain dosage.  Dr. B said the  threshold is different for everyone, but it's certain to be past 50 mcg, which he characterized as "not much at all."  

In light of the above, while I still remain hesitant to increase my T3 dosage, I'm now leaning toward doing it at my next appointment with Dr. W.

With regard to testosterone, the conversation went basically the same as above.  Just like Dr. W, Dr. B strongly encouraged me to continue supplementing until my blood levels rise above 800 ng/dl.  He said that a man my age should have twice the testosterone levels than my blood work indicates (300-400).  He encouraged me to keep supplementing until I reach optimum levels for my age.  He practically guaranteed that I would feel much better if I reached that goal.

It's getting harder and harder for me to turn away from this holistic approach, so I think I might start following Dr. W's recommendations more closely and at least give it a try.  If my blood levels of thyroid and testosterone reach the recommended levels and I still don't feel significantly improved, I can back off to current levels.  I've done the research and I understand the risks and benefits, so I think it may be time to see what happens.

Of course, all of this will be done parallel to my other treatments, so my hope is that the hormone supplements will allow me to take another equally strong step forward.  Wish me luck!

Sunday, November 25, 2012

Three Keys to My Recent Improvement

First, I want to clarify that I am not "all better."  I realized, reading my recent posts, that it wasn't entirely clear whether I was saying I'm "better" as in "all better" or better as in "improved."   It's definitely the latter. (The word "better" can cause all sorts of confusion, as I've learned from communications with my friends and family).   I have jumped up to a new plateau that is perhaps 5 or 10% better on average than I was before.  But I'm still quite limited in what I can do.  I fact, I realized after trying to work yoga back into my weekly routine that I'm not yet ready for serious exercise.  Even relatively light yoga set me back temporarily.

The good news is that, even if I regressed to my previous level of illness tomorrow, I'd still feel encouraged just knowing that this type of improvement is possible.  I'm aware that the CFS message boards are full of long-time CSFers who experienced extended periods of improvement, followed by remissions.  So I don't think I'm out of the woods by any means.  I'm just trying to enjoy my improvement for as long as it lasts and, with any luck, build on it.

Key 1 - Equilibrant

First, how do I know what caused my improvement?  The short answer is, I don't know for certain.  Nothing is 100%.  Maybe I would have improved had I done nothing.  But I think I can be fairly confident in my assessment based on the timing of various improvements compared to the initiation of treatments.  And when I skip a dose of these treatments and experience a setback, it confirms my initial suspicions.  There's also a small amount of intuition involved.

By taking Equilibrant, which I've discussed at length in past posts, I believe I laid the groundwork for further improvement later.  By itself, Equilibrant didn't lead to any tremendous improvement, but it stabilized the situation.  Prior to Equilibrant, my crashes were more severe and lasted longer.  But as I reported to Dr. C, I didn't feel that it was necessarily making the highs any higher.  Rather, it muted the lows and made them less frequent.

Key 2 - Infrared Sauna

Later, when I added the far infrared sauna to my routine, I took a significant step forward.  Building on the groundwork that the Equilibrant laid by modulating my immune system and stabilizing the situation, the infrared sauna actually raised my daily health average, so that my highs were higher (on top of the lows still being less severe).

Key 3 - Thymic Protein

The third factor is that I increase my dosage of thymic protein whenever I start to feel rundown or that a crash might be imminent.  I had been taking thymic protein occasionally for almost a year, but usually only one packet per day when I was feeling most ill.  More recently, I increased the dosage to the maximum of 3 per day (but again, only when I start to feel crash-y).  This seems to further shorten and blunt any crashes that might have designs on ruining my day/week.  The increased dosage was suggested by Dr. C (but only after inosine and several other Equilibrant co-factors failed).  

If I had to rate the importance of these three treatments, I would say: (1) Infrared sauna, (2) Equilibrant, and (3) Thymic protein, although, #1 and #2 are very close.  I'm not sure that either the sauna or the Equilibrant would have worked without the other, but that's only a hunch.

It seems that every PWME responds to different treatments depending on the etiology of his/her particular brand of ME/CFS.  So this trifecta certainly won't work for everyone, or even anyone but me.  And of course there's the usual caveat that I'm not a doctor and you shouldn't rely on any advice from me in forming your own treatment plan.  But maybe this will give others some ideas of possible treatments to discuss with their own doctors.

A rough graph of my improvement compared to the initiation of 'the key 3' treatments

Now, if you had told me a year ago that I would achieve this kind of moderate improvement, I would have been ecstatic.  But I think it's human nature to always want more.  I'm of course not satisfied, and I probably won't be unless/until I can do everything I used to do.  However, if ME/CFS has taught me anything it's patience.  If I have to bide my time and continue with my supplement/sauna routine for several more years before I (hopefully) take another step forward, I will gladly stick with it.  

Finally, I should mention that these three treatments aren't my only treatments.  I still take a number of other supplements, but I believe that these supplements are less important.  What I don't know is if they somehow made the improvement possible by, again, "laying the groundwork."  Over time, I'll have an opportunity to experiment with slowly cutting back on some of these other supplements and gauging the results.  And of course, I'll report what happens here.  

As always, thank you for reading, and I wish you the best of luck on your journey toward improved health.  As you know, except for a handful of dedicated and dare-I-say saintly doctors, we're mostly on our own with this complicated illness.  I wouldn't have found any of these three treatments without the knowledge I picked up from the message boards and blogs (that's how I learned of Dr. C too).  So I encourage others to share what works for them if/when they find something.  

Saturday, November 17, 2012

New, cautious workout plans

The vacation is going along swimmingly. Our daughter was brought down to join us for the second half of the vacation by grandma. Thanks Grandma! Not surprisingly, my health has remained steady given that I've had nothing to do for the last few days but sleep in and relax by the shore and/or pool.

I've had plenty of time over the last few days to think about where I am in my progress toward improved health and what the next step might be. My goal now is to very cautiously take the next step and start working out again. For the last six months i've practiced yoga periodically, but never on any kind of regular routine. Looking back at my health chart, I see that I'd often squeeze in a cluster of 2 or 3 yoga sessions across a few days when I was feeling well, then skip 7 to 10 days. Clearly, I'll never make any progress with this kind of erratic routine.

So my goal is to start practicing at least a little yoga every other day, starting with ten minute at-home sessions and cautiously increasing the amount if I continue to feel well. This schedule should fit in well with my existing sauna routine, which is also an every-other-day deal. I'll do yoga on the sauna off-days.

If the regular yoga routine sticks, after a while I'll see about starting back up with some light cardio workouts. But for now I'll take things slow so I don't undo the progress I've made.

Wish me luck, and as always, thanks for reading.

Wednesday, November 14, 2012

On Vacation in San Diego

First, an update on last week's illness:  It turned out not to be food poisoning as I first suspected (Sue was right!) but rather a stomach flu that made the rounds in our community.  I was fooled by the fact that the symptoms came on right after I ate a few handfuls of peanuts.  But then my wife got sick the next day and we later received an email from our daughter's daycare center warning of a nasty stomach flu that had hit nearly every enrolled family.

The good news is that I was back to almost "normal" by the next day, which really surprised me.  And I have continued with the relatively good health streak that I wrote about last Sunday.  At the risk of jinxing it, I really do seem to have turned a corner.  I've since developed a more detailed theory on what may have led to this improvement, which I'll blog about in the near future.

We're on vacation right now in San Diego, staying at a historic hotel on the island of Coronado. This is the first time we've been away from our daughter for more than 24 hours since she was born 14 months ago.  She's staying with grandma and grandpa right now and probably soaking up every minute of the extra attention.  Mrs. Calvin seems to be handling the separation far.

The hotel is a historical landmark, built in 1888.  If you've seen the 1959 classic comedy Some Like It Hot with Marilyn Monroe, the hotel provides the main setting for the high-jinx of Jack Lemon and Tony Curtis.  Here's a picture of the exterior:

This was originally supposed to be our Hawaiian vacation, but we ultimately decided to make this a local affair for a number of reasons (one of which was the hazards of air travel for a CSFer).  I have to say, while Hawaii would have been nice, it's hard to beat a one-hour drive from door to door.  That's gotta be worth an extra day or two of crash-free vacation time.

We've stayed here once before, exactly four years ago on a trip to explore San Diego's best surf spots.  How our lives have changed since then!  Then, we woke at dawn each morning to catch glassy morning waves.  Now we wake at dawn each morning out of sheer habit, responding to phantom baby cries.  But, in many ways I'm better suited now to truly enjoy a vacation in the traditional sense of sitting by the shore all day and not...doing...anything.  That old restlessness is mostly gone, or at least, in hibernation.  

My wife just snapped a picture of me typing this post, which I'll post below.  Just as on Facebook, it's difficult to post pictures of your vacation without seeming like a braggart.  So I post this with some reservation, but hear me out!  My blog is too often about the bad news.  Often the only times I feel like blogging are when things aren't going well.  So I hope you'll indulge me this once if I engage in a teeeeny tiny bit of boasting.

There, I'm done.  Thank you for that.

Oh by the way, it's 70 degrees and sunny.

OK, now I'm really done.  It's out of my system.  :)

Monday, November 5, 2012

....and bad news. (Hint: Food Poisoning)

Honestly, you can't make this stuff up!

Yesterday, I wrote about how I hadn't had a crash in five weeks.  I noted that I felt a possible crash coming on at the time of writing, but I was hopeful that it was another false alarm.

About two hours later, I was sitting in front of the TV innocently munching from a tub of mixed nuts from Trader J__'s.  Within five minutes, I started to feel stick to my stomach, so I stopped eating the nuts.  For the rest of the evening, I felt slightly sick to my stomach, but the feeling wasn't too concerning.  It felt more-or-less like the discomfort when one has eaten too much...almost like bloating.

I went to bed around 8:30.

At 10 I woke up with a raging storm in my gut and full fledged crash symptoms.  I snuck out of bed and went downstairs to the garage and grabbed a bucket.  I then spent the next three hours lying in a fetal position on the couch, occasionally vomiting into the bucket (and then, of course, cleaning out the bucket.)  At the risk of saying too much, I was also running to the bathroom frequently due to plumbing problems on the other end.

After a few hours, the stomach storm died down enough to attempt sleep, but we all know that's just the beginning of another battle.  Once the crash symptoms have been awaken, sleep usually proves elusive.  True to form, I lay on the couch attempting sleep for the rest of the night but never quite achieving it.

So now I'm home from work today with all the usual (for me) crash symptoms: body aches, muscle twitches, shortness of breath, tachycardia, and of course extreme flu-like malaise.  This not a good week for me to miss work because we have a deadline on a big motion opposition.  Luckily, I got ahead of the game and drafted the vast majority of the opposition last week, just in case another crash came along.  (I manage my time much better now with ME/CFS).

My co-workers will have to pick up the slack - there's simply no way I could be at work in my current condition.  I can barely get out of bed to take care of my basic needs.

What did I learn from all this?  First, that it was an incredibly unlucky coincidence to get food poisoning a few hours after writing about how great things were going.

Second, I'm not surprised that the food poisoning made my stomach feel bad, but I am a little surprised that it triggered a full-blown crash.  One thing I didn't mention in yesterday's post was that, over the last five weeks, I actually caught a cold that didn't trigger a crash.  I got the usual cold symptoms, but not the full-blown crash.  This was a first since getting ME/CFS.  I was hoping it was a sign that my immune system had healed itself somewhat.  

Now I know that the immune balance I seem to have achieved over the last five weeks is still delicate.  Any moderate to severe insult to my immune system is enough to trigger a crash.  The true test will be in how long it lasts and if it remains as severe as it is right now.  I'm hoping to wake up tomorrow morning after a full night's rest and feel at least 50% better.  We'll see....

Sunday, November 4, 2012

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

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 
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

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
2013 Avg. 85.69


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


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  



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,
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.


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

Jan.     88.19             Kidney and groin pain was pretty bad but otherwise decent
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

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   

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.