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, July 31, 2012

Need a laugh? A relatable Onion article

For those that aren't familiar, The Onion is a satirical newspaper that writes hoax news items, typically in Associated Press style.  This Commentary piece is supposed to be relatable to anyone who's had to suffer through another's detailed account of their fitness routine, but I found it especially relatable as a PWME.

I hate to admit it, but there was a time in my life where I might have been on the giving end of a few insufferable speeches like this.  Now that I'm sick, I can't stand to hear other people talk about their athletic pursuits.  Is this Karama?  Is this what I sounded like to other people?  God, I hope not.

Monday, July 30, 2012

Drugs May Shut Down Several EBV-Induced Diseases

I don't have much time to blog today, but wanted to post this article from the University of Wisconsin School of Medicine and Public Health about research into drugs that shut down Epstein Barr Virus (EBV), which many believe is a significant factor in ME/CFS.

Although the article is from 2010, a recent post on Phoenix Rising provided an update on the status of clinical testing for these drugs. (See second post in the thread.)  These trials will be interesting to follow as they progress.  

Wednesday, July 25, 2012

Methylation cycle testing, and some "bright-side" musings

Pretty soon, I'll be off to Hoag Hospital to get blood drawn to send to Health Diagnostics laboratory in New Jersey.  They'll run a methylation panel, which essentially tells you how well your body is eliminating waste from the blood stream, among other things.  It is thought that defects in the methylation cycle are a key part of the problem for people with ME/CFS. Apparently Health Diagnostics is the only lab in the country that runs this particular panel.  It will be an interesting experience: This is the first time I'll have ever shipped my blood across the country.  I never thought I'd be doing that.

But in the mean time, I was thinking of two more things that I can look to as the "bright side" of my illness.  Granted, they don't compare to having my health, but I try to focus on the positive.

1.  My electric bill has been about half of what it was in previous summers.  That's because, with my lower body temperature, we don't need to run the air conditioning.  We simply keep the windows open.  My wife was never as sensitive to the heat as me, so she doesn't mind keeping the A/C off.

While I originally got sick in the middle of last summer, I was still in the acute stage of the illness, so my body temperature hadn't dropped yet.  This summer we're starting to see the savings, which has already been in the hundreds of dollars, and could be in the thousands by year's end.

2.  I have a lot of favorite items of clothing lying around and in storage which, over the last five years, I've outgrown -- especially as I packed on weight around my torso.  But I held onto these clothes anyway, perhaps because of their sentimental value or because they "just don't make 'em like that any more."  

Now that I've lost 30 pounds because of the CFS, I'm suddenly able to fit in all these clothes again.  I love it.  

I actually think my ideal weight is somewhere between my current weight and what I weighed just before I got sick.  I wouldn't mind gaining about 15 pounds back.  But for now, I'm just happy to give these old comfortable clothes a second go-around.  

Sunday, July 22, 2012

More Stevia Product Reviews: Chocolate & Sodas

In previous posts, I reviewed flavored liquid stevia drops, and a homemade recipe for stevia chocolate sauce.  I've since had the opportunity to try a few more products: two stevia chocolate brands and two soda brands.  The two chocolate brands reviewed below are the only two stevia chocolate brands on the market - at least that I've been able to find.

Stevia Chocolate by Dante Confections

Dante Confections' stevia chocolate bars are available for order on Amazon for $29.95 for eight bars.  The price works out to about $3.74 per bar, which is pricey but not outrageous.  Premium chocolate bars with sugar care comparably priced.  For those of us PWMEs on no-sugar diets, stevia products are one of our few indulgences.  I forgo so many other expensive activities with ME/CFS that I'm comfortable spending a few dollars on chocolate.  

Dante Confections produces a darker variety of chocolate.  Their product only comes in one flavor: straight up chocolate.  Nothing fancy here, just coco goodness.  

My Amazon order arrived within five days, with each small brick of chocolate individually wrapped in thin tissue paper, which in turn were wrapped inside ordinary sandwich bags.  As I opened the package, I felt like I was receiving illicit contraband!  

If you're a dark chocolate lover, this is your brand.  I loved every bite of it, but then again, I can handle the relative bitterness of dark chocolate.  My wife, who prefers sweeter chocolate, sampled it and said, "I don't know how you can enjoy this stuff."  So it depends on your taste palette. 

One benefit of the darker chocolate was that I found it lasted longer.  I was much more likely to savor each square and let it melt in my mouth -- usually being satisfied with two small squares as an after-dinner treat.  With the YC brand (below), I found myself eating whole bars at a time.  I think darker chocolate forces one to savor it more, which might be a good thing when we're talking about such a pricey commodity.

The ingredients list is simple, which I found reassuring.  Three ingredients:  Chocolate liquor, stevia, and pure vanilla.  That's it.  (Incidentially, chocolate "liquor" should not be confused with chocolate "liqueur."  There is no alcohol in it.  It simply means that it's made from hardened liquid chocolate.)

Personally, I couldn't tell much of a difference between the stevia chocolate brands I review here and regular chocolate bars made with sugar.  It all tastes delicious to me.  But some of the more "sophisticated" chocolate lovers on Amazon claim they can tell the difference.  Take that for what it's worth...

Stevia Chocolate by Coco Polo

The other brand of stevia chocolate is Coco Polo.  Their chocolate is of the more milk chocolate variety, with various flavors to choose.  I ordered the variety pack of 12 bars, which I believe are no longer available.  They currently offer an 8 piece variety pack for $42.00.  This works out to about $5.25 per bar.  

I ordered Coco Polo directly from the company's website which, in my case, was a mistake.  It was 21 days from the time I placed my order until the goods arrived at my house.  When you're out of chocolate, this is an unreasonable amount of time to wait!  At about day 17, I sent an email inquiring about the status of my order.  It was never returned.  I've since discovered that Coco Polo is also available on Amazon, which might be the better choice next time.  

The Coco Polo packaging is much more professional looking, if that kind of thing matters to you. The bars arrived each sealed in gold-colored wrappers, which in turn were inside printed paper sleeves.  The sleeves contained the usual Nutrition Facts and ingredients sections on the back.  

Interestingly, the main sweeteners (by weight) in these bars is not stevia, but rather erythritol and inulin.  I'm finding that this is pretty common with "stevia" products.  I gather that it's difficult to approximate the flavor of sugar with stevia alone, but you can get pretty close with a combination of stevia and these other natural sweeteners.  Stevia is the last ingredient listed in the Coco Polo bars, which could mean that the bars only contain trace amounts of it.  But, erythritol and inulin are also both low on the glycemic index and arguably don't feed candida.  

The chocolate itself tasted much sweeter than the Dante Confections chocolate -- probably due to the darker chocolate mixture, but also because Dante doesn't use erythritol and inulin.  And of course, it was nice to have the variety of six flavors: Almond, cherry, elderberry, cocoa dark, nibs and ginger.  The only flavor that I found to be a little....odd was ginger.  Who's ever heard of ginger chocolate?    

All in all, I liked both brands for different reasons.  In the future, I'll probably alternate my orders between the two companies.  

Zevia Sodas with Stevia

Finally, I've been sampling Zevia brand sodas, which I purchased from Whole Foods and Sprouts markets (although they can also be ordered directly).  They are sold in ordinary 12oz. soda cans, packaged in six-packs, with 15 flavors available.  So far I've tried five of them: Black cherry, orange, caffeine free cola, Dr. Zevia, and ginger root beer.  

Again, it's been over eight months since I've had a regular soda with sugar or aspartame, but these sodas taste almost as good if not exactly as good as "the real thing" to me.  Prices are reasonable, although not as cheap as name brand products.  For instance, a 24 pack can be ordered from Amazon for about $19, or about $0.80 per can.  

Again, as with the chocolate reviewed above, be aware that the dominant sweetener by weight is not stevia, even though the product says "sweetened with stevia" on the can.  While this statement may be correct, Erythritol is listed four ingredients higher than stevia on the ingredients list.  But, I don't begrudge Zevia their marketing strategy, which I think is fair enough and not overly deceptive.  Anyone can look on the back of the can before buying.  

All in all, I think it's a good product and I'm grateful to see more and more options enter the marketplace for those of us who avoid sugar and artificial sweeteners.

                                                      Blue Sky Free Sodas with Stevia

7/27/12 update:  I've since discovered another brand of canned stevia sodas while shopping at Sprouts Market, called Blue Sky Free.  It is apparently manufactured by the more well-known Hansen Beverage Company.  While I've only had an opportunity to sample one flavor so far, Cherry Vanilla Creme, I find that it tastes about the same as Zevia.  And like Zevia, they also sweeten with Erythritol in addition to stevia

Their price at Sprouts Market was a little lower than Zevia - although I can't remember the exact amounts.  On Amazon, it seems to be a little cheaper as well: about $17 per 24 pack, or about $0.70 per can.

Blue Sky offers a different range of flavors than Zevia, so it's nice to have a choice between the two brands.  In addition to the usual flavors like Cola and Root Beer, Blue Sky's selection includes Lemonade and Jamaican Ginger Ale, among others.  For the full selection, see their website.

I'll try to update this post later when I've had a chance to try more Blue Sky flavors. 

Friday, July 20, 2012

Promising research on blood flow and muscle problems in ME/CFS

It's seems the ME/CFS blogosphere reports on new studies nearly every week, so it's sometimes difficult to get excited about any one study.  But, I'm usually able to muster a little more excitement when the researcher attempts to identify actual solutions to, not just causes of ME/CFS.

In the research outlined here, Dr. Julia Newton states that she and her team have identified certain medications (not yet revealed) that help the bodies of PWMEs improve blood flow and eliminate the buildup of acid in the muscles.  Newton believes that blood flow problems and muscle problems are central to ME/CFS. 

Thursday, July 19, 2012

What's with all the abandoned blogs?

Short post today:  Have you ever wondered what's up with all of the abandoned ME/CFS blogs?  If you click through some blog rolls, or for instance, the ME/CFS Blogger Ring's member list, you'll notice a significant portion of the blogs just..... drop off.

You'll notice a last post about an ordinary ME/CFS topic like, say, supplements, dated two or three years ago. And then....silence.  Did the author take a sudden turn for the worse?  Maybe they just got bored with blogging?  Or did they suddenly recover and forget all about their blogs?  (I hope!) 

Either way, I find it a little unsettling, like the eerie silence of a ghost town.  I guess I'll choose to believe that they all recovered....    

Monday, July 16, 2012

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: 


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.


Thursday, July 12, 2012

What My Latest Labs Tell Me

On Tuesday, I received the results of a new round of blood work, which revealed both good and bad news. Or maybe, instead of "bad," I should say "neutral."  Here's a summary of the most significant findings.

Natural Killer Cell Activity

My Natural Killer Cell (NKC) activity improved from 8 to 14 (out of a normal range of 8-170 LU30).  So while I'm still at the very low end of the normal range, I've shown some improvement.  This is encouraging, but I still wonder if this increase of a mere 6 units could be explained by the vagaries of testing methods and lab conditions.  Only further testing in the future will tell for sure.  I'd like to think that the immune modulators (Equilibrant and ImmunoStim) are responsible for this increase.  


IgG antibodies of HHV-6 remain exactly unchanged since they were first tested in December, 2011. They are still 1:320.  This is after 4 months of Famciclovir at 500mg twice a day.  I understand that Famciclovir is supposed to be a long term treatment because it merely prevents the virus from replicating.  So, as the theory goes, one has to wait for existing viruses to die off of "natural causes" before seeing the benefits.  Nevertheless, I became impatient, and allowed Dr. W (my other ME specialist) to convince me to switch to Valtrex.  He's been touting Valtrex over Famciclovir, despite the research I found that said Famciclovir may be more effective against HHV-6.  

Vitamin D3

Vitamin D3 is apparently in the optimal range now according to Dr. W - right at 74 ng/mL.  This is after supplementing 10,000 IU's per day for seven months.  When my Vitamin D was first tested in December, it was at 40.  That's when I started taking the 10,000 IU's per day.  By February, it was up to 71.

I wondered back in February, if I continued taking 10,000 IU's per day, would my levels continue to rise until I reached toxicity (which starts at about 200 mg/mL).  A poster on Phoenix Rising was very adament that this would be the case.  Dr. W said that it would not - that instead the levels would flatten out once I reached around 75.  He said the body would self-regulate.

It turns out that Dr. W was probably right.  My serum levels rose 29 points in the first two month, and only 4 points in the next 4 months, even thought the dose remained consistent.  

Now that I've reached an optimum level, I might start cutting back the dosage by 1,000 IU's at a time and see if I can maintain my level in the 70s.    


My bilirubin counts continues to drop, probably because of the consistent use of Milk Thistle.  My last labs from April revealed the first time in my life that my bilirubin count was in the normal range...but just barely.  Now, it is at 0.8 mg/dL, which is the middle of the normal range.  As long as I can keep it in this range, I might consider myself to be free of Gilbert's Syndrome, which would theoretically make me one step closer to healthy. 


Mercury was measured in my blood at 5 mcg/L.  The reference range considers anything below 10 as normal.  For a fully health person, 5 mcg/L probably wouldn't be anything to worry about.  Dr. W seemed to think that a PWME needs to be as healthy as possible to have the best chance at remission, and that even a mercury level of 5 could be a problem.  I'm not sure if there's anything to it, or if this is just quackery.  When I get a chance I'll look deeper into it and decide whether I need to do anything about it.  

If I decide to do something about it, Dr. W said there's a heavy metal detoxification supplement that he recommends.  At this point, I'm reluctant to start yet another supplement.  Where does it end?  

Everything else checked out pretty much as expected and isn't worth commenting on.  

Thanks for reading.    

Tuesday, July 10, 2012

Crunching Numbers: My Health Rating Broken Down By Day of the Week

On the heels of my recent month-by-month breakdown of my health ratings, I decided to process the numbers in a different way and look at my average health ratings by day of the week.  The idea is to see if my weekly patterns fluctuate with my work schedule.  I work an ordinary Monday through Friday, 9-5 type of schedule.  Would my health ratings vary by day of the week?  If so, what would that tell me about the effect of work on my health/recovery, if anything?

For an explanation of my rating system, and why it is skewed high, please see this prior post.  Based on 43 weeks' worth of daily data, going back to September, here are my average percentages by day of the week:

Mon.  75.12
Tue.   75.54
Wed.  75.97
Thu.  76.85
Fri.    78.21
Sat.   77.92
Sun.  78.75

First, it should be noted that there isn't a huge variation in the averages.  My worst day of the week, Monday, is only about 3.5 percentage points lower than my best day, Sunday.  I rate myself in increments of 5%, so this is less than one full increment.  A statistician might tell you that these differences are not "statistically significant."

But if I'm to draw a conclusion from this, I note there is a gradual rising pattern from Monday through Friday.  My best days are typically Friday and Sunday, with Saturday not too far behind. There are a few possible explanations for this.

                                                                   Mood Bias

I suspect that if you asked anyone who works a regular 9-5 job to track their daily mood, the pattern would be similar to what you see above.  Weekends would be the highest, and Mondays would be the lowest.  Although I've tried earnestly not to let mood affect my daily health rating, it's possible that I've let a little mood bias seep in.

                                                    Post Exertional Malaise (PEM) Effects

In terms of pure physical exertion, I expend more energy on weekends. As hard as I might try to relax,  I can't seem to help it.  Just walking from one room to another, and up and down the stairs in my house is more exertion than sitting in my desk chair at work.  (Stress and mental energy, on the other hand, are higher on work days.)  

Given that many PWME's cite a lag time of 24-48 hours between exertion and malaise, my weekly pattern might show that I crash from the weekend on Mondays and slowly heal throughout the week.  

If, on the other hand, work was causing me to get worse, I would expect my weekday pattern to reflect a gradual descending pattern, where, as the week wears on, I slowly fade into poorer health.  Instead I see the opposite - I get better as the week goes on.  

I realize this theory runs counter to the prevailing thought in ME/CFS circles about the effect of work, but I'm just noting that, in my particular situation, it's one possible interpretation of the data.  I'm not trying to say that work might be making me better, but rather, that it's possible I need to get better at relaxing and healing on the weekends.

                                                                       Stress Effects

If on the other hand, stress is negatively affecting my ME/CFS, my lower weekday ratings might be a reflection of increased cortisol (a stress hormone) on work days.   I don't normally think of my job as stressful per se, but every job comes with some stress I suppose.  This interpretation assumes a more real-time cause & effect relationship, with no lag.  But why would my health follow a gradual upward trend throughout the week?  My stress, what little of it there is, remains pretty much constant throughout the week.   

                                                                      My Conclusions

If I had to guess which one of these interpretations is correct, I'd guess mood bias.  I also want to note that processing the data in this way says nothing about the long term effect of working on ME/CFS recovery.  It could be that working or not working has an effect on one's recovery which can't be measured by small weekly fluctuations.  

Sorry to draw you along this far only to tell you...I don't know.  Still searching for an answer on this issue.

Sunday, July 8, 2012

Summary of Latest Appointment With Dr. C

On Thursday, I attended my second appointment with Dr. C, who is one of the more well-respected ME/CFS doctors and researchers on the West Coast.  (For a recap of my first visit to Dr. C, click here.) This appointment lasted 49 minutes from the time Dr. C entered the exam room - impressive.


We started off by discussing how I'd been faring since the start of a course of Equilibrant two months ago.  I explained that, while May was statistically my best month since I started keeping records in September, I seemed to return to average in June.  I explained that, in June, I ran out of ImmunoStim because of a temporary shortage, and that this could explain the dip.  In other words, I wondered if the combination of the two herbal immune modulators was responsible for my improvement in May.  

Dr. C seemed skeptical, citing a lack of studies showing effectiveness of the herbs used in ImmunoStim -  mostly maitake and beta glucan.  But he said it was possible that the two were having a synergistic effect.  We agreed that the only way I'd be able to draw a conclusion was is if I improved again after resuming the ImmunoStim.  (Incidentally, I received a new shipment of ImmunoStim last Wednesday and am, again, feeling better on a combination of the two, although it's only been a few days).

One a side note: Even though June was an average month, the Equilibrant seems to have flattened out the peaks an valleys.  So while my highs weren't as high, my crashes weren't as low.  I'm not sure if that's a good thing or not. 


Dr. C said that when people don't respond to the Equilibrant alone, he recommends that they add Inosine.  Inosine is a precursor of ATP, and is commonly advertised to athletes to improve their workouts.  It is available over the counter, and in fact, I've since ordered 90 tabs from Amazon for about $10. 

He said he hasn't been recommending the inosine for as long as the Equilibrant, so his sample size is smaller (50 compared to over 800).  However, of the 50 patients to whom he has recommended Inosine + Equilibrant, 40% have shown substantial improvement.  

Just like with Equilibrant, one will know if it's working if he/she gets a flu-like reaction for the first 2 or 3 days after taking it.  (That's exactly what I experienced every time I increased my dosage of Equilibrant, until I reached a plateau at 5 pills a day.)  

Unlike Equilibrant, however, one can develop a tolerance to inosine -- much like one develops a tolerance for alcohol.  For this reason, Dr. C gives patients the option of "pulsing" their doses.  For more severely sick patients, typically the pulsing does not help - so he recommends a constant daily dose.  But for moderately ill patients like myself, he recommends taking two inosine tabs, twice a day (4 total), for a week and then taking three weeks off.

Incidentally, he mentioned that Dr. Cheney also recommends pulsing inosine, but on a different schedule (2 days on, 3 days off).

Apparently, a possible side effect of inosine is an increase in uric acid, so a doctor should monitor one's levels.  


Dr. C said that, by the time of my next appointment in two months, he'll know whether the drug Amantadine is going to be the breakthrough that he hopes it will be.  Amantadine is a drug for Influenza and Parkinson's disease, but there is some suggestion that it may be effective for ME/CFS when combined with Equilibrant.  

[We're getting into an area now where Dr. C lost me a little, but I'll do my best to explain what I thought he said.  This part also assumes that Dr. C's enterovirus theory of ME/CFS is correct.]  

The enterovirus has a protective mechanism where it "hides" when it's not replicating -- I believe, inside of a shell(?) - although this is unclear.  When the virus replicates, it releases new viruses outside of the shell, "like a dandelion releasing seeds into the wind."  So the Equilibrant helps the immune system kill the new viruses before they attach, but it still can't get inside the shell and kill the established viruses.  

But, it is thought that Amantadine may be able to get inside the shell and cut the RNA strand enterovirus off where it attaches.  If I understood Dr. C correctly, this could be an important breakthrough.

Personally, I take an "I'll believe it when I see it" view of this information.  It seems we're often hearing about new potential breakthroughs, none of which have panned out so far.  But it's nice to know that there's hope!

The Work Issue

For those that read my blog regularly, you know I've been struggling lately with the issue of what to do about work.  Should I continue to work full time?  Cut back to part-time?  Or quit completely?  I've received some conflicting (but well intentioned and always appreciated) advice from others on this issue.  For instance, my other CFS specialist, Dr. W, said he saw no reason to stop working.  But other PWMEs (who I probably trust more than Dr. W) have warned that I could be squandering my best chance to recover.  

Dr. C said that in his experience, it doesn't matter whether one works or not.  He said that the only predictor of the progression of one's ME/CFS that has ever been shown to be reliable is the severity of the initial infection.  If one's initial infection is 10M viruses, and the body's initial immune response kills 60% of them, that leaves 4M viruses left (which apparently is a lot.)  But if the initial infection is only 1M viruses, and the immune system kills 60%, the remaining 400,000 can be somewhat controlled by the body's weakened immune system thereafter.  

Dr. C also said he has had patients go both routes -- quitting work and not.  Of course, many of them do not have a choice because they're simply too sick to work in any capacity.  But he said that for those who did have a choice, it hasn't seemed to have made a difference in their disease progression.  Those who stopped working, hoping to recover, did not recover.  And those who continue to work usually don't decline further because of the work.

However, he did caution that if I felt myself getting worse because of work then I should stop or cut back.  So, this one little hesitation on his part -- this hedging -- leaves the question open.  I'm going to continue to consider the problem and gather others' input.  And of course, most importantly, I'll continue to monitor and track my own health closely.  

A Note about Cytokine Profiles

I asked Dr. C if there was any blood test that would help track whether the Equilibrant was, in fact, shifting my immune system toward Th1.  He said that there wasn't anything reliable, and that we have to stick to patient self-reporting of symptoms.  During this discussion, he mentioned that Dr. Klimas runs cytokine profiles, but that he didn't think these were helpful.  First, let me be clear: Dr. C is friends with Dr. Klimas and obviously has an enormous amount of respect for her based on the way he talks about her.  But on this issue, they respectfully disagree.  Dr. C feels that cytokine profiles will always be wildly different, even among PWME's, because of the different etiologies of each of our conditions, and the way the viruses attack different parts of the body.  For this reason, he doesn't believe that cytokine profiles are useful.  

I have no opinion on this because I haven't looked into it myself, but I thought the difference of opinion between these two researchers was worth noting.  


Just as I did with Dr. W, I tried to pin down Dr. C as to exactly what he thought my chances of achieving full remission were.  He confirmed what I'd basically already worked out for myself: with the current state of medical knowledge, "very few" people go into remission.  In reality, (and I'm paraphrasing) people achieve some semblance of a life by a combination of modest improvements through treatment, and learning to adapt to new limitations.  

This doesn't mean I'm giving up hope.  I think it's possible to be both realistic and hopeful at the same time, which is what I've been striving for all along.

[9/12/12 update: for an updated post after my next visit to Dr. C, click here]

Thursday, July 5, 2012

New Study "Definitively" Links ME/CFS Severity with Mitochondrial Dysfunction

This interesting study by Dr. Myhill and others was published last week, and reportedly establishes a definitive link between ME/CFS and mitochondrial dysfunction.

Personally, I file this under the category of "Things we already knew, but it's nice to confirm anyway."  Now, it would be great if someone could figure out how to fix it!

Tuesday, July 3, 2012

Why do we do this?

I'm pretty sure it's not just us PWME's that do this.  I did it before I got sick

Sunday, July 1, 2012

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.