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

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

Tuesday, February 28, 2012

Crash update

I went to my GP today because this crash has been getting worse day by day, and I began to wonder, "where's the bottom?"  "How bad can this get?"  My doctor (we'll call her Dr. L) took one look in my throat and whipped out the prescription pad so fast it was like she had it on a holster.  For a moment, I balked.  "Do I really need antibiotics?"

I was thinking back to all the times in the last six months when I read about the perils of antibiotics and how they decimate the "good bacteria" in the gut, and how I promised myself I wouldn't take them again unless I was on my deathbed.  In fact, I was posting about that just this past Friday.

My GP frowned, put the Rx pad away, and continued by listening to my breathing and concluded that I have a respiratory infection and possible strep throat.  "You need antibiotics," she said.  I agreed wholeheartedly.  Funny how your resolve melts away when you're sick.  I can always repopulate my microflora with a strong probiotics later.  I need relief NOW.

As far as the severity of this crash: This is as bad as it's ever been.  The only thing I can compare it to is when this whole thing began back in June.  Of course, back then I thought I simply had a bad virus and I'd be back to my normal self in a few more days.  Ah, the good ol' days.  

Does this mean I'm back to square one in terms of healing?  Did this crash set the clocks back to June?  I certainly hope not.  

Sunday, February 26, 2012

Big Crash

Unfortunately, I'm in the middle of one of the worst crashes I have yet experienced.  Even getting out of bed to go to the bathroom or kitchen is a big effort.

I'm not exactly sure what caused this crash because there are two obvious possibilities.  The first is that I am experiencing B12 protocol start-up symptoms, as I'd been warned about.  The other possibility is that I simply caught the cold/flu that my wife and daughter have been struggling with all week.  Actually, I think this second possibility is more likely because I have other symptoms consistent with a cold/flu, like a raging sore throat and a stuffy nose.  It seems very unlikely that I will be able to go to work tomorrow at this rate.

The only good thing about this crash is that it came on a weekend, and apparently - and I never knew this - the TV airwaves are full of movie matinees on Sunday.  I'm trying to decide between The Replacements and Rocky III right now...

Saturday, February 25, 2012

What Are the Best Probiotics?

*This is the next is a series of posts summarizing my research of common ME/CFS supplements and trying to determine the consensus best dosage, and best brands.  Keep in mind, I have no medical background or training, so the goal is just to sort out conflicting internet information and find a common nexus.

People take probiotics for a wide variety of reasons.  There are 2 or 3 reasons for PWMEs to take probiotics.  First, probiotics boost the immune system as a whole.  The gut is the immune systems' first line of defense, and probiotics promote a healthy gastrointestinal tract.  Second, since many PWME's have compromised immune systems, they also have candida overgrowth.  The proliferation of "good bacteria" in probiotics tends to crowd out the candida yeast.  Finally, probiotics help treat IBS and other GI tract problems that are common to PWMEs.  

What Is the Best Brand of Probiotics for PWME's?

Apparently, different strains of probiotics are effective for different symptoms.  Some are better for immunity, and others are better for IBS, etc.  I wasn't interested in trying to determine the best brand for each symptom.  Rather, I wanted to determine which brand was recommended most often for general treatment of a wide variety of symptoms--especially since PWME's usually don't just have one symptom.  For more specific information on buying probiotics, see this article.  

My method was to review as many probiotics rating sites and message boards to learn which brands were recommended the most often.  Is it possible that some of the rating sites are actually paid advertisements?  Yes, but I tried to use common sense to detect and avoid obvious paid ratings.  For instance, one brand was rated #1 on one website, and not mentioned in any other ratings.  On the other hand, if a brand consistently rated in the top 5-10 on most lists, but not always #1, I gave that brand more credit.  When you think about it, who would pay to have their product ranked #7 on a list of 10?  Also, at least one rating site is operated by a non-profit organization, so I gave that website more credence.  

One of the brands that I saw ranked consistently high was Ultimate Flora.  For example, it ranked 1st here, 2nd here (the non-profit rating), and 3rd here.  A few people in the Amazon reviews section said it gave them unpleasant side effects, but the same is true of just about any product reviewed on Amazon.  Two other brands that I frequently saw rated highly were Jarro Dophilus, and Nutraelle.   

[1/16/13 edit:  Ultimate Flora offers many different formulations, but I've learned to stay away from their "Critical Care - 50 Billion" formula, or anything with more than about 15 Billion cultures.  I crash from these extra-strong probiotics, and get major shortness of breath.  Others I've talked to said the same thing.  The right amount seems to be anywhere from 5 to 15 Billion.]

Interestingly, the three best selling brands on Amazon aren't necessarily the most highly rated.  The best selling brands, according to this article are: Align, Acidophilus Pearls, and Threelac. (5/12/12 update: A friend of mine strongly recommends Threelac, and says that some of his PWME friends also call it their favorite.)

Do Probiotics Need a Protective Coating?

Acidophilus Pearls are marketed as having a protective "pearl" coating that ensures the bacteria inside survive your harsh stomach acids long enough to get to where they're needed: your intestines.  But is this necessary, or merely a marketing strategy?  Honestly, I couldn't find the answer to this question.  None of the ratings sites that I reviewed mentioned this feature, but ME/CFS specialist Dr. Teitelbaum seems to lend credence to this claim.  Then again, many PWMEs are skeptical of Dr. Teitelbaum's recommendations.  So, if anyone has more information on this issue, please let me know in the comments section and I will update this post.

The Nuclear Option

I mentioned above that I was also going to review message boards for recommendations on probiotics.  Unfortunately, I didn't find much of a consensus on this topic.  Recommendations were all over the place, with one exception.  This thread from Phoenix Rising includes several endorsements for a super probiotic called VSL3.  It contains about 500 billion living bacteria per dose, which is about 10 to 50 times the typical dose of other brands.  It is also extremely expensive, at $86 per packet of 30.  

[4/25/12 update:  My negative experience with VSL3 is written about here.]

My Choice

Speaking for myself, I do think that probiotics are an important part of my treatment, especially with my high candida antibodies.  My doctor agrees.  I decided to try Ultimate Flora, but at the same time, I can't completely dismiss the "protective coating" claim made by Acidophilus Pearls.  Since most brands' dosage recommendation is 1-3 tablets per day, I decided to hedge my bets and take two different brands.  So I'm taking the pearls in the morning and Ultimate Flora at night.  I will, of course, update this if/when I can tell if it's working.  

[8/23/12 update:  I've been reading more and more about the importance of rotating brands of probiotcs, i.e., taking one type until the bottle runs out, then switching brands, and so forth.  The theory is that the natural state of the gut has many different species of good bacteria living in balance.  Since every brand of probiotics has different combinations of bacteria, if you stick to just one brand, you could get an unbalanced gut that is dominated by the few species of bacteria that happen to be in your chosen brand of probiotics.  Again, I don't know if this theory is true, but it makes logical sense to me.]  

[2/28/13 update:  Dr. Amy Yasko recommends rotating probiotics daily.  She recommends having 3-7 brands on hand and taking a different one every day.]

Thursday, February 23, 2012

The more I learn about Dr. Myhill, the more I like her

There's a recent article by Dr. Myhill making the rounds on the message boards, and I wanted to repost it here.  What impresses me about Dr. Myhill is that her theories on ME etiology and treatment are broad enough to explain the  disparate symptoms we experience.  Maybe it's a lack of understanding on my part, but other researchers' focus often seems too narrow.

If you have a few minutes to spare, please take a look at the article linked above.  I think that, ultimately, Dr. Myhill's theory explained there, or some version of it, will be proved correct.

Tuesday, February 21, 2012

Maybe we're not so rare...

It seems that if you mention ME/CFS to enough people, they start coming out of the proverbial woodwork with stories of friends and relatives who have it or have had it, or who are currently suffering from it.  It's people you've known for years and would have never suspected.

In the past three months, my family and I have discovered that we know four people who have been formally diagnosed with ME/CFS.  In some cases, we're talking about close family friends or in-laws, and we never had a clue.  Just in the last week, we've learned of two.  (By the way, three of the four made full recoveries at between 1.5 and 2 years after diagnosis).  It's even more surprising when you consider that we really don't mention ME/CFS to many people.  It makes me wonder how many other people we know who have been affected by ME/CFS, but who we won't discover until the topic somehow comes up in conversation.

I very rarely allow myself to have "why me" type of thoughts, but I'll admit that they float in and out of my head occasionally (maybe once a week, if we're being honest.)  So I need to remember this post the next time I have those thoughts.  Because, the "why me" line of thinking is predicated on a feeling one's circumstance is statistically improbable.  But if all of these other people I know have had it, maybe it's not so improbable after all.  That's the way I choose to look at it anyway...

Friday, February 17, 2012

Plunging into a B12 protocol today

Anyone who follows the Phoenix Rising (PR) message knows about the competing B12 protocols touted by a couple of doctors/researchers who post regularly on the site.  For those that don't know, here's the 2 cent version:

The $0.02 B12 Explanation   

Several years ago, an autism researcher, Dr. Yasko, developed an autism treatment that involved repairing the body's methylation cycle.  The methylation cycle is a chemical process that is responsible for detoxifying the body.  Apparently, studies show that people with various chronic conditions, including ME/CFS, have a malfunctioning methylation cycle.  (Believe it or not, it somehow relates to autism too.) 

Later, a Dr. Rich Van Konynenburg, developed a simplified version of Dr. Yasko's treatment and tested it on a group of volunteer ME/CFS patients.  Like other ME/CFS treatments, it worked for some and not for others.  For a few, it worked extremely well, to the point where they claim to be fully recovered.  At present, Dr. Van Konynenberg frequently posts on Phoenix Rising, answering questions from posters who are interested in trying the protocol.

Another PR poster with a medical/scientific background (known by the handle "Fredd") proposes an alternative protocol that focuses on active forms of vitamin B12 and folate.  Apparently, there are both inactive and active forms of vitamin B12 and folate.  The body converts the inactive forms into active forms, but research shows that some people's bodies don't effectively convert the inactive forms to the active forms.  So Fredd favors taking the active forms to, sort of, sidestep any conversion problems.

On the other hand, according to Dr. Van Konynenburg, the body's conversion process acts as a sort of natural damn, helping control adverse "start-up reactions" that could result from a sudden flood of B12.  It seems, however, that both protocols are known to produce adverse start-up reactions, to the point where many people can't complete the protocols.  In short, it usually gets worse before it gets better.

My First Choice

For weeks, I couldn't decide which protocol to try, or rather, to try first.  Then I began leaning towards Dr. Van Konynenberg's protocol.  Dr. Van Konynenburg's credentials and findings are more widely available on the internet (for example, here, and here), and it seemed like the safe choice. While it's certainly clear that Fredd knows his biochemistry, I don't have the time to look through all of his 2,400+ posts to learn more about his credentials, if they are even available.  BUT, I ultimately chose to try Fredd's active B12 protocol because, after reading hundreds of his posts on PR, I was finally convinced by his arguments. 

It's difficult for me to pinpoint exactly what Fredd wrote to change my mind.  It was probably the collective effect of reading hundreds of posts.  I did find it interesting that Fredd seems to have identified a problem with using the inactive form of folate, which, it seems, Dr. Van Konynenburg later adopted.  Fredd also emphatically warned of potassium deficiency when supplementing vitamin B12, which has already proved important for me.  

In the end, we (the ME/CFS community) are fortunate to have both of these highly intelligent individuals working to help us.  I'd like to thank them both, and, should either of you come across this page (unlikely), please let me know if I have accidentally misrepresented your views above and I'll be happy to correct it.  

Monday, February 13, 2012

How long does it take to accept your limitations?

On Sunday afternoon, Mrs. Calvin and I drove to the beach to expose our baby girl to the pleasures of salty air and booming surf.  When we arrived, the beach parking lot bustled with groups of surfers both beginning and ending their sessions.  Those beginning their sessions wrestled with their thick winter wet suits.  They went about this in silent excitement, almost anxiety, and I understood exactly how they must have been feeling.  A little over eight months ago, that was me.  I was them.  My heart would begin racing before I entered the water.

Those ending their sessions chattered excitedly about their triumphs.  One gentleman displayed his broken board and fielded questions from his friends.  Unloading the stroller from the car, I observed 3 or 4 of these scenes at once.  I vicariously experienced their endorphin highs, and the feeling of salt water dripping from newly cleared nasal passages. And the simple pleasure of toweling off one's soggy head in the cool air.  I miss everything about the surfing experience and the way it inundates all five senses.

I'm really trying to avoid dwelling on the negative here, but some days it feels like I've been grounded.  Like I'm watching the other "kids" play from my bedroom window.  Like I'm this guy:

I hope I don't sound glum.  I truly have a world of things to be thankful for.  It's just difficult adjusting to new limitations.  Often my mind still believes that I'm capable of doing things my body can no longer accomplish.  There's a lag.  I'll often see someone engaging in a fun activity--jogging, tennis, etc--, feel the urge to do it, and then remember that I can't do it.  

Ah well.  In one of my next few posts, I think I'll focus on brainstorming more interests that I can use to replace the activities I used to enjoy.    

Sunday, February 12, 2012

What is the best dosage & brand of potassium?

*This is the next is a series of posts summarizing my research of common ME/CFS supplements and trying to determine the consensus best dosage, maximum dosage, and best brands.  Keep in mind, I have no medical background or training, so the goal here is to sort out conflicting information and find a common nexus.

In my February 3rd post, I recounted how an apparent potassium deficiency caused me to crash, even though I had only just begun to dabble in a half-baked vitamin B12 protocol.  Notably, I began experiencing twitches all over my body, and later, pain in both thighs.  As I started taking potassium supplements, the  twitching slowly faded (although a small amount still remains).  Yet I was still experiencing a strange aching in both of my thighs, which can also be a sign of low potassium.  That aching remained even after I began supplementing potassium, and didn't go away until I switched forms of potassium: from potassium chelate to potassium citrate.

Based on my review of medical websites and ME/CFS message boards, this is what I've determined regarding the best dosage, maximum dosage, and best brand of potassium:

Maximum Dosage / Best Dosage

The recommended daily allowance (RDA) of potassium for adults is 4,700 mg.  Frankly, if you look at the amounts of potassium in even the highest potassium foods, it's amazing that any of us ever meets our RDA.  Apparently, the diets of our evolutionary ancestors contained about 4 times more potassium than those of modern man.  

Ask most people to name a food that's high in potassium, and almost everyone cites the banana.  And it's true, the banana is near the top of the list with about  500 mg.  But that means, if you ate nothing else, it would take over 9 bananas per day to meet your requirements.  

It seems that even with supplements, it is difficult to ingest enough potassium.  In the U.S., potassium is sold in tablets with a maximum of only 99 mg.  So, if you didn't get any potassium from food, it would take about 47.5 pills per day to meet the RDA - that's more than half of a typical bottle of 90 pills.  

So, all of the above tells me, when in doubt, err on the side of popping a few extra potassium pills.

On the other hand, it is slightly concerning that the side effects of overdose are basically the same as deficiency: irregular heartbeat, muscle weakness, confusion, numbness/tingling of the hands/feet, and chest pain.  So, without blood tests, there's really no way of knowing whether you're deficient or overdosing!  

But the consensus from this 8 page thread on Phoenix Rising seems to be that, as long as you have healthy kidneys, the risk of overdose is much less concerning than the risk of deficiency, because the kidneys usually filter excess potassium.  Put another way, it usually takes years of overdosing on potassium to trigger kidney failure, but a potassium deficiency can cause serious trouble (like heart failure) right away.  

I wasn't able to find any studies that listed a maximum daily dosage of potassium, but some sources said that any more than 1,800 mg in any one meal can tax the kidneys.  But if you only eat three means a day, you have to average over 1,500 mg per meal to meet your RDA.  So we're shooting for between 1,500 and 1,800 mg per meal?  Sheesh.  That seems to require some pretty careful planning.

I've also read that one should ingest about twice as much potassium as sodium, but who can keep track of it so precisely?  It seems to me it's simply better to increase potassium intake gradually until I no longer experience twitching or muscle pain. 

My conclusion from all this is that it is best to try to obtain most of my potassium from foods (yogurt, bananas, and plantains have about 500-800 mg per serving), and then to supplement another 200-300 mg per meal in pill form.  Theoretically, the rest of my RDA will be met with snacks and the occasional 99 mg pill without a meal.  If I still experience symptoms of deficiency, I'll gradually increase the after-meal doses to a maximum of about 600 mg.  

Best Brands / Forms

Potassium supplements come in all varieties: including potassium chloride, citrate, gluconate, bicarbonate, aspartate, chelate and orotate.  The chelate, aspartate and citrate seem to be the most common.  Personally, I found that the citrate form worked better for me.

Searching the internet far and wide, I wasn't able to find any consensus brand recommendations, but based on my experiencing with a staggering amount (two!) of brands, I'll say that Twin Labs Potassium Citrate works fairly well for me.  I'll update this if I find something that works better.  

Thursday, February 9, 2012

At least I don't eat like THIS anymore...

Ridiculously Optimistic, Bright-Side Post #2

I've been keeping a health log since September, before ME/CFS was even a faint suggestion in my head.  At the time I started it, I was simply trying to find something, anything, in my daily routine that I could connect with my ups and downs.  It would still be a couple more months before my doctors and I suspected ME, and another month or two before I changed my diet.

A few days ago, Mrs. Calvin and I were winding down for the evening, each propped up against our sides of the headboard.  She was finishing reading The Help and I was clicking away at the laptop, updating my health log.

As I finished updating my log, I glanced back at those early months.  Looking at the "Food" column, my eyes bulged.  I began to laugh.  This caught Mrs. Calvin's attention so I read some of the entries aloud to her, and she laughed to.

How is that in the span of 5 months, I'd changed my habits so drastically that the mere mention of my old habits induced laughter?  While I doubt it will be as funny to you, readers of this blog - all three of you - I invite you to judge me anyway.  These entries are cut and pasted without edit.  (Semicolons separate breakfast; lunch; and dinner):
9/7:  Bagel; Taco Bell chalupas; orange chicken from Panda Express 
9/11:  Oatmeal, frozen breakfast burrito; peach, 2 ice cream sandwiches; steak & enchilada for dinner with Horchata.
9/12:  Breakfast burrito, Motrin; (skipped lunch); meatball sandwich and french fries.
9/13: Cottage Cheese; breakfast burrito w/ bacon; Rubio's Big Burrito Especial w/ chips for lunch; pizza with pineapple.
9/15: Breakfast sandwich w/ ham and cheese; apple, peach, nachos, peanuts; hamburger casserole & sourdough toast, apple cobbler
The list goes on and on like this.  My biggest downfall, like many Southern Californians, was Mexican food - or rather, Americanized Mexican food, where each burrito is a rice and bean filled carbohydrate bomb.  No wonder my candida antibodies were off the charts.  

(Normally, Mrs. Calvin would have stepped in to ensure that I ate healthy for at least one meal a day when we were home together, but she happened to be recovering form a C-section at this time.)  

Even now, only 5 months later, that list seems revolting to me.  So, at least I'm not slowly killing myself with that junk any longer!

Tuesday, February 7, 2012

A new NYT article about CFS

The New York Times published an article yesterday about CFS and the XMRV scandal.  It's doesn't say much that most of us don't already know, but it's nice to see CFS get more press in such a high profile publication.

Friday, February 3, 2012

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 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.