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.

Digestive enzymes = crash?

Over the last couple of weeks, I have been dutifully taking various Basic Support supplements from Yasko's protocol, adding a new one each 3 or 4 days.  So far, I've added pyconegol, General Inflammatory RNA support, Adenosyl, and the general multivitamin called Neurological Health Formula.  Everything has been going well...until today.

I added digestive enzymes this morning, taking only 1 pill (2 are recommended).  Within a half hour it was clear that I was spiraling down into a very bad crash with nausea, brain fog, and neuro symptoms in the legs and arms (numbness and incoordination).  The crash has lasted all day and shown no signs of letting up.  In fact, I'm struggling to type this because of the neuro symptoms.

Ordinarily, I would have left work and gone home but I have a deadline this week and simply couldn't miss work today.  Frankly, it was miserable.  Trying to concentrate when my brain is fighting against me is not fun.  Worse is trying to act normal with my cooworkers when they are attempting to discuss complicated topics with me.  I put on my best business face and did the best I could.  I'm not sure if they noticed anything was wrong, but I wouldn't be surprised if they did.  At times, it was clear that I wasn't making much sense.  

Hopefully if I stop taking the digestive enzymes, these symptoms will disappear quickly.  But of course, I can never be 100% certain of the cause of any crash.  There's always a few other suspects hanging around, creating doubt.  Could this be delayed effect of the adenosyl, i.e. hypokalemia? Or just a crash from the hectic activity of the last few days?

I'd be interested in hearing from anyone else who had a similar experience with digestive enzymes.  I'm not even sure exactly why Dr. Yasko recommends them, so I'll have to research that issue as well.

Thanks for reading today.  

Stevia may not be ideal for ME/CFS patients

Admittedly, I'm a fan of stevia and use it (or products with it) at least 3 or 4 times a week.  But for those PWMEs with low blood pressure and/or POTS/OI issues, you may want to avoid stevia or, at least, use it sparingly.  Stevia lowers blood pressure, and this can be a problem for people who already have low blood pressure.  [1] [2]

Stevia, it turns out, also helps lower blood sugar and is sometimes used as a treatment for those with hyperglycemia.  Since my blood sugar tends to run a little high even after switching to a low carb diet, I will continue to use stevia in moderation.  Incidentally, my blood pressure normalized after the first 6 months of having ME/CFS, so I'm more concerned about blood sugar than blood pressure, but I realize many of us have the opposite concern.

On Camping and Trying to Pinpoint my Crash Threshold

The family and I went camping with friends this weekend at a spot on the coast just north of Santa Barbara, called El Capitan.  It's difficult to get a reservation at El Capitan because of its unique location on a wooded bluff overlooking the Pacific.  But due to Mrs. Calvin's foresight and quick-draw keyboard fingers, we secured a coveted reservation back in February.  So despite my hesitation, we decided to go for it.  Part of this decision was that I also wanted to test my theory that camping might be an ideal "activity" for a moderately ill PWME.  After all, the whole point of camping is to go into the woods and just chill out.

Well, the weekend turned out great ... until we returned home Sunday evening and I crashed.  But, the good news is that this crash may help me pinpoint my crash threshold.  

We arrived at the campground on Friday morning and, over the next three hours, took our time leisurely setting up the tent and the rest of the camp.  Although this activity involved brief spurts of intense energy, I went about it slowly and rested between tasks.  No problem.  I felt fine that evening and the next day.

On Sunday morning, however, we had to pack up the camp more rapidly because we'd made plans to leave at the same time as our friends and meet for lunch in Santa Barbara.  This packing process was essentially the same process as the unpacking process, only in reverse.  So theoretically, it should have  taken about the same amount of energy and thus, no crash.  The difference I believe was, this time, I crammed the whole process into about an hour.

As usual, I felt fine during the activity, but as soon as it was over and there was a letdown (i.e. getting in the car and sitting down), I could tell I'd overdone it.  I felt extremely weak.

By the time we'd parked the car on State Street in Santa Barbara, I'd recovered a little.  We did meet our friends for lunch, and I'd regained some energy.  I was hoping that whatever I'd felt in the car had been just a false crash.  But any hope of it being a false crash was extinguished about an hour after arriving home when I went into full crash mode, with aching, flu-like symptoms and shortness of breath.  I woke this morning in an even worse state.  So, I think I may have learned a valuable lesson about pacing, namely: 


DO IT!

I should mention that there are a few other possible causes of this crash, although I think they are less likely.  Nevertheless, I want to record them for my own future reference:

• I switched from Famciclovir to Valacyclovir on Saturday night when the Famciclovir ran out.  Could this be a start-up reaction?  Probably not.
• Both of the babies on the trip were sick, and C once sneezed directly on my face.  Could this be a regular viral illness?  
• I forgot my B12 supplementation on Sunday.  Could that cause a crash this severe?  Doubt it.

    

Lessons learned about 2 of my supplements: Ribose and SAM-e

My wife, baby, and I just returned home from a weekend at my parents' house.  My parents live about an hour's drive up the coast, which usually isn't too tedious of a trip for me (although I felt too sick to drive - my wife had to handle that part).  The original point of the trip was for me to attend a class reunion, but by the time we arrived at my parents' house, I was too crashed to attend.  But the weekend turned out fine anyway.  It's always gratifying to watch my parents fawn over their granddaughter.  I've learned that babies are as addictive as crack cocaine to grandparents.

When packing for the trip, I remembered all of my supplements except D-Ribose.  I usually take 5g of Ribose twice a day.  By the time Sunday morning rolled around, I'd missed two doses and was feeling a type of malaise that I hadn't felt since before I started taking Ribose back in November.  I was shocked at how quickly the effects set in.  It's scary to think that my ability to function on a semi-adequate level each day may be due to this one supplement. It's as if the Ribose, alone, is artificially propping me up enough to do my limited daily activities. 

When we reached home late Sunday afternoon, I immediately took 5g of Ribose and felt a return to "normal" within a half hour.  That will be the last time I forget to bring the Ribose when I leave the house!

The other revelation I had is that SAM-e is powerful, and needs to be taken with plenty of potassium.  I've been on Fredd's active B12 protocol since February, but had not added any of the optional cofactors, such as SAM-e, until last week.  Fredd is clear that one needs to watch his/her potassium levels when increasing dosage of B12, or when adding cofactors.  I thought I had covered my bases by increased my potassium intake by 400mg/day at the same time as the SAM-e.  This was clearly not enough.  Beginning Friday, I came down with the same neuro symptoms - the same crushing brain fog and muscles twitches - that I'd experienced when I first started taking B12 back in February.  So I backed off of the SAM-e and B12 yesterday, and increased my potassium intake, and by today the neuro symptoms had almost completely disappeard.  

Lessons learned.

Study mentions green tea as **bad** for ME/CFS

This research article regarding the development of a home monitoring method for Th1/Th2 imbalance has been mentioned on some of the forums lately.  It sounds as if the test itself is a long way from being something that the average person can buy/use on a regular basis.  But, what's interesting is that the article mentions green tea as being bad for PWMEs because it stimulates the Th2 side of the immune system -- exactly what I don't want, according to my doctor.

I find this particularly interesting because I drank a cup of green tea (decaf.) yesterday afternoon and woke up feeling horrible today.  Still do, in fact.  I had just climbed out of a brief two-day crash,  the brevity of which I believed was a good sign that the Equillibrant was working.  So today's unexpected dip right back into crash mode makes me wonder if the green tea had anything to do with it.

[5/23/12 update:  Here's an article explaining why green tea is bad for Th2 dominant people.]

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

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

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

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

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

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

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

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

Suspending LDN....for now

Unfortunately, I am going to suspend the low dose naltrexone (LDN) experiment....for now. I have been on a moderate crash since Wednesday, which is about when I started taking the LDN. The crash and the LDN may be completely unrelated--in fact I think they probably are--but I can't take the chance.  Even if I only have a slight suspicion that a treatment is making me worse, it is extremely difficult to push forward with that treatment in spite of the suspicion.

Unfortunately, a trio of old symptoms which I thought had been resolved, have returned with this crash: shortness of breath, swollen tongue, and G.I. distress. None of these are normally reported side effects of LDN.  I have also experienced the usual side effect of LDN: insomnia.

If/when I return to normal functioning within the next few weeks, I plan to eventually resume the LDN and see if these symptoms return. For now, I'm disappointed, especially since I was doing so well before this crash. I almost wonder if I got too greedy and should have simply left well enough alone and not taken the LDN. There's always a temptation, when we get a little better, to push ahead and try to improve even further. It seems many times, we end up backsliding instead.  Having said that, I'm not ready to write off LDN.  I will give it another chance in the future.  If it fails me again, I will probably drop it at that time.

My hot streak ends, but there's good news on the horizon

Finally, after 15 days of high functioning (above 75%, with only mild flu-like symptoms), I came crashing back down today.  But this time, instead of bemoaning the crash, I just feel thankful for an unprecedented run of good days.  I knew it had to end some time, so I tried to enjoy every minute of it while it lasted.  I haven't strung together 15 good days since I became ill in June, and one of those days was my best ever (based on my personal rating scale).  I'm not sure if the Famvir or the methylation protocol had anything to do with it, but it's certainly possible.  

As for what caused the crash, I have two theories.  1) I ran a couple of errands yesterday and allowed myself to become stressed out.  I ran late for two appointments, and found myself speeding around and yelling at other drivers.  It felt so good to be part of the world again, I got carried away.  While I wouldn't normally think this could cause me to crash, I've been warned by so many veteran ME/CSFers that days like this can cause a crash, that I tend to defer to their expertise. I simply have to learn to take it easy when I'm feeling good, or I'll be doomed to repeat this cycle.

2)  The other possibility is that the crash is a reaction to taking low dose naltrexone (LDN).  I began taking it last night, starting with a very low dose of 1.1 mg.  But, the commonly reported side effect of starting LDN is insomnia, not fatigue, so I'm less inclined to give credence to this theory.

Finally, the good news!  I've been on the waiting list for my first choice ME/CFS specialist doctor, but his schedule is so impacted, he couldn't see me until late August!  I just learned a few minutes ago, by a stroke of good fortune, my appointment has been moved up to April 27th--four months earlier than expected!  I'd do a little dance if I had the energy.  If you're reading this, thank you to the person who helped move my appointment -- you know who you are!

Low Potassium Crashed Me

For several weeks, I'd been flirting with the idea of trying one of the vitamin B12 protocols.  Once I finally decided to try it, I had to decide between the two protocols suggested on Phoenix Rising.  Then there's the matter of figuring out the most current version of the protocol and exactly which supplements are to be taken in which amounts.  It's not as clear as you'd think.

As I digested all this information, I happened to have a bottle of vitamin B12 (methylcobalmin) lozenges lying around.  So I thought, "what the hell.  I'll get a little head start on whichever protocol I choose."  I figured, both protocols involve B12 supplements (along with at least 5 or 6 other things) so I might as well start popping the B12 while I make up my mind.

Yes, I had read the several, emphatic threads on PR warning about potassium depletion when starting the B12 protocols.  Apparently, it's critical to supplement potassium when you're on an active B12 protocol.  But, honestly, who thinks a few days head start with the B12 is going to harm anything?  (Actually, it was more like a week)

Well...last Saturday, I developed a brain fog like nothing I'd experienced before.  It lasted three days, and came with a general crash and a new type of headache.  I thought, could this be potassium depletion already?  After Googling the symptoms of low potassium, I decided it probably wasn't.  Wrong!

A day later, my muscles began to twitch...all over my body...non-stop.  Nerves were randomly twinkling like Christmas lights.  My heart rate increased, brain fog returned, and for the first time in my short run with ME, I truly, truly experienced depression.  It wasn't anything like I thought it would be...it was much worse.  One does not just will himself into a happier state of mind.  I understand now why depression is described as a chemical change.

This lasted for another 48 hours.

While the brain fog could have been caused by any number of things, the twitching and depression pointed unmistakably to potassium deficiency.  I rushed out and purchased a bottle of potassium supplements. Within a few hours of taking the potassium, my symptoms began to resolve.  Now, three days later, I'm still feeling the occasional twitch, but they are slowly fading.

I guess I've learned not to mess around with these protocols.  I had a tendency to think, "it's all just vitamins! This is over-the-counter kiddie stuff."

Not so much anymore.  Lesson learned.

Crashing Again

I was doing well all week, with more energy than I've had since I first became sick in June.  My energy and mental clarity at the office were at almost pre-ME levels.  But unfortunately I crashed yesterday.

Throughout the week, my wife and I had been looking forward to Saturday's dinner reservations at new restaurant.  This would be one of our first times eating out since our daughter was born in August.  Then I awoke yesterday morning feeling like  I'd been hit by a nasty flu bug.  It was the same, familiar flu-like illness.

We still made the reservations, and I tried to forget about how I was feeling.  This dinner was important to my wife, as it was a celebration of her year-end bonus from work.  I'm glad I forced myself to go.  Seeing my wife smile and enjoy her few hours of freedom from the routine of breastfeeding and swaddling our baby was worth the struggle.  

As far as the causes of the crash, I have two theories.

1.  I took an oil of oregano capsule for the first time on Friday.  It is supposed to be powerful anti-fungal to fight candida, and boosts the immune system.  It often causes Herx reactions.

2.  I recently increased my B12 intake, and switched from the inactive to the active form of B12 (methylcobalmin.)    Supposedly when people start this protocol, their immune systems often "switches back on."  But another possibility is that the B12 is causing a deficiency in potassium or folate, as explained in this thread. 

3.  Then again, there's always the possibility that this is yet another unexplained crash--just part of the cycle of ME. 

I suspect that it's probably the oil of oregano, since I'd been on the active B12 for about a week already.  I'll lay off of it for a few days and then try it again and see if the same thing happens.

Things That Make It Worse: Altitude and Air Travel

I'm starting a series of posts tracking what makes my ME symptoms better and worse.  While I've discovered a number of things that have marginally improved my symptoms, today I'll focus on what makes them worse.

I've discovered that high altitudes and air travel seem to worsen my symptoms.  (I say "seem" because you can never be sure after one or two experiences.  There are too many other variables).

Two weeks ago, my wife and I took a trip to a family cabin in the nearby mountains, at an altitude of 5100 feet (554 meters).  Before we embarked, I was leery of the possible effects of the altitude, because one of my symptoms is shortness of breath.  I wondered how much worse the shortness of breath would be at high altitude.  On arriving at the cabin Friday night, I felt great, and wasn't fazed by the process of unpacking the car and lugging heavy bags up a steep flight of stairs.  I felt more-or-less normal that first night.

But by mid-morning the next morning, I started to crash.  Nausea, fatigue, light headedness and shortness of breath all came on strong.   By early afternoon, it was obvious that we needed to cut the vacation short and drive back down to sea level.  The strange thing is, I was feeling fine again the next day.  This made me fairly certain that the altitude caused the crash.

This past weekend, we flew by airliner to San Francisco for the Christmas holiday (a short 1 hour and 10 minute flight each way).  On the way to San Francisco, once again, I felt fine, but crashed the following day.  Again, however, it was a short crash, and I improved by the second day.  Unfortunately, the second day involved a return trip home.  I think it was these two trips in three days that ensured a more severe crash.  It could be the effects of the rapid altitude/pressure changes, or it could be the exposure to the notoriously germ-filled environments of airplane cabins and airports.  I'll never know, but I started going downhill yesterday and am much worse this morning.

Whatever the exact cause, I'll need to think carefully before planning any air travel in the future.  At the very least, I know that two flights in three days is probably too much.

Personal Update: Crashing

I seem to be crashing tonight, and I don't know why.  Suddenly, I'm experiencing the return of symptoms that I haven't felt in some time, like significant brain fog, nausea, dizziness, and as always, fatigue.  The nausea is particularly frustrating because I thought, potentially, I had put that behind me  when I changed to a low carb diet in early November.  Certainly, the low carb diet has helped regardless of this setback.

This doesn't seem to be a case of post exertional malaise (PEM) because I didn't do anything out of the ordinary yesterday.  I suspect there may be a dietary cause because I consumed much more dairy than ordinary yesterday, and I have also been eating strips of prociutto as part of my dinner.  Several authors in the book "Recovery from CFS" mentioned the elimination of pork from their diets as a key factor in CFS diets.  I couldn't understand why pork would be different from any other meat until I read the following tonight, on a website concerning candida diets:

"Pork cells contain retroviruses that survive cooking and may be harmful for those with a weakened digestive system."

I'll have to experiment further and see if dairy or pork is a possible culprit.