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

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

Wednesday, May 29, 2013

Six types of ME/CFS crashes

Part of the reason that it is so incredibly difficult to control and predict ME/CFS crashes is that there are at least six different types of crashesprobably moreeach with it's own cause.

A Little Background

About a year ago, I began an ambitious and naive effort to solve the mystery of my crashes.  I added three new columns to my daily health chart, one for "Activity level," one for "stress level," and one which assigned a binary numerical value (1 or 0) to whether or not the day was a work day.  In addition, I was already keeping track of my daily health rating and my "big three symptoms": flu, shortness of breath, and flank pain.  

The plan was this: after a year of tracking all three of these potential causes, I would use the spreadsheet's automatic graphing feature to create graphs showing the relationships between those three potential causes and my daily health rating (the effect).  This would, in theory, show me what caused crashes, what my crash threshold is, and any lag time between cause and crash.  

Well, after 8 months of tracking the three potential causes (ending in January), I figured I had enough data and made the graphs.  What did I find?  Nothing.  Absolutely no patterns emerged whatsoever.  Usually if you're really looking for a pattern, you can find one, even if there's no actual cause/effect relationship.  But the data defied all attempts to make sense of it.  Sometimes a particularly "active" day would be followed by a crash, but other times, not.  The same went for a particularly stressful day or a work day.

I came away from this experiment resigned to the fact that crashes (and their causes) are simply too complicated to hope to gain much, if any, control over.  Since then I've spent more time thinking about why my experiment failed, and I've come to believe that it's because there are too many different types of crashes.  As an example, the six that are most prominent in my life are:

The Dirty Half-Dozen

1.  Post Exertional Malaise:  This is the kind of crash that seems to get the most ink on ME/CFS forums and blogs.  It's where the patient surpasses his/her anaerobic threshold (AT) for too long or too often in a given day.  The crash sets in 2 to 3 days later as the body attempts to clear out the excess oxidization created by crossing the AT.  It feels exactly like the name suggests - utter and complete malaise of a type that only a PWME can understand.  Then your AT becomes even lower.  Suddenly your heart rate spikes with even the mildest of efforts.  People sometimes try to avoid these crashes by wearing a heart rate monitor.

2.  PEM - the other kind:  Crashing doesn't always require crossing one's AT, does it?  I wish it were that simple.  For those of us who are lucky enough to be able to stand and walk without surpassing our AT, we know that even if we stay under our AT and don't do anything that raises our heart rate too much, we can still crash from simply standing too long, or walking too long.  For those with bad POTS symptoms, even sitting upright for too long will do it.  And for others, mental strain will do it as well.  The feeling of this type of crash is similar to the first type of PEM - utter malaise.

3.  Bugs:  We encounter a whole slew of viruses and bacteria every single day.  People with healthy immune systems fight off the vast majority of these invaders before the person ever feels the slightest symptom.  For us, it's different.  In the bodies of PWMEs, otherwise weak pathogens find a place where they can hang out for a while and spar with our weak T-cells and B-cells.  I don't know if it's the pathogens themselves or the immune system's reaction that makes us feel so awful, but I recognize this type of crash by its symptoms.  These crashes come with sniffles and coughs, sore throats, respiratory issues and other traditional cough and cold symptoms.  

4.  Herx.  Ah, the mysterious and possibly mythical Herxheimer reaction, also known as the "die off" effect.  Supposedly this means that whatever medicine or supplement regimen you embarked on is working.  The problem is, few if any can really distinguish between a Herx reaction and a plain ol' bad reaction.  Some say they can tell the difference, but there's no consensus on exactly what that feels like.  The only thing I know for sure about Herx is that, if you're feeling blue about a crash, you can often convince yourself that it is actually a good sign.  This is almost never the case, but it feels good to think it anyway.

5.   Adverse reaction:  Different from Herx, this is when you simply didn't react well to a new treatment.  This can feel like anything, it just depends on the treatment and your body chemistry.  Maybe you added a new supplement that started a reaction which stripped your body of another critical nutrient.  If you're lucky, you can trace it back to a supplement you started the day before.  But sometimes it can take months for your body's reserves of a particular nutrient to be depleted, and good luck tracing that back to its origin.  I hope you like pouring through 86 page threads on Phoenix Rising, looking for a few nuggets of scientific truth among mountains of speculation.  About half the new treatments I try end this way.  For some people I know, it's more like 100%.   

6.  New symptom:  Sometimes a new symptom just hits you out of the clear blue sky.  You have no idea where it came from or why it chose that particular day to reveal itself.  You know it's somehow related to ME/CFS because you never suffered such random attacks before ME/CFS. But you don't have the faintest clue how it fits into 'the big scheme of things.'  You figure you won't even bother telling your doctor about this one because she won't have the faintest clue either.  Sometimes it goes away in a few days, as mysteriously as it appeared.  Sometimes it becomes a new recurring symptom and now it's not a crash anymore.  Congratulations, it's your new baseline.  

I'm sure that there are other types of crashes that I am forgetting, or that I haven't experienced...yet.  I know others have spoken about stressful life events leading to crashes.  I can't speak to that yet, but some day I just might.  Hopefully not.

My Conclusion

Of these six types of crashes, the only one that I feel I have the slightest modicum of control over is the first one: traditional post exertional malaise.  To a lesser extent, I may have some control over 2 and 5, but I'm unwilling to stop tinkering with treatments and I'm not going to shut down all activity unless/until I ever get to the point where I'm housebound.

I'm usually pretty good at managing my lifestyle and avoiding PEM crashes, yet I still crash all the time.  It's because there are still 5 other types of crashes waiting to come up on the ME/CFS wheel of fortune.  For me, number 3 ("Bugs") is by far the most common type of crash I experience.  So, like most of us, I do the best I can to minimize my chances of crashing while still accepting that most crashes are beyond my control.  And somewhere in the margin are a handful of #1 & #2 crashes to whom I say: bring it on.  It's worth it. 

Tuesday, May 28, 2013

Need some optimism for a change?

The linked video offers a nice bit of hope for our chances of solving ME/CFS and other related neuro-immune diseases.  It basically says that medical treatment based on one's genetic profile is the future and has a good chance of leading to breakthrough developments.  While the video appears to be an advertisement of sorts for Dr. Kogelnik's Open Medicine Institute, it brings together some big names in the ME/CFS research world to comment on their hopes and goals for the future.

Friday, May 24, 2013

Correct Dose of B12 for ME/CFS Treatment

For those of us taking Vitamin B12 as part of their ME/CFS treatment, it's always difficult determining the exact right dose (not to mention the right combination of forms of B12).  I recently stumbled on Dr. Rich VanK's explanation of why the dose needs to be at least 2000 to 2500 mcgs to see results. Quoted here in full:
Hi, all. 
The above question has been around for quite a few years, and we haven't had a good answer for it. I think it is now possible to answer it, based on some recent research in Korea. 
Here's some background: In the 1990's, Drs. Charles Lapp and Paul Cheney initiated treatment of their CFS patients by injection of vitamin B12, after observing that many patients had elevated homocysteine or methylmalonate in urine testing. They found that there was a threshold of response at between 2,000 and 2,500 micrograms per injection to produce an improvement in energy, stamina or wellbeing that lasted for two or three days. Lower dosages did not appear to produce improvements. This was puzzling, because the recommended daily allowance (RDA) for vitamin B12 in adults is only 2.4 micrograms per day. Why did the dosage need to be so high to produce improvement in symptoms?
As many of you know, the sublingual hydroxocobalamin dosage in the Simplified Methylation Protocol today is comparable to the injected dosages that Drs. Lapp and Cheney found to be necessary, still very high compared to the RDA dosage, and this question has remained. (I note that high dosages of B12 are also used in autism, which shares much of the same pathophysiology with ME/CFS.) 
O.K., in 2011 a paper was published by two researchers in Korea, Jeong and Kim. The abstract is pasted below. 
The research they report was actually done on a bovine (cow) B12-processing complementation group and cyanocobalamin. However, the human complementation group is very similar, and I suspect that the results will also be similar for other forms of B12 than cyanocobalamin. 
They studied the CblC complementation group. This is part of the B12 processing pathway that is found inside all cells. When a form of B12 comes into a cell from the blood by the usual transcobalamin route, it is bound to CblC, and its beta ligand (cyano-, methyl-, or adenosyl-) is removed. Then it is sent on to be converted back to methylcobalamin or adenosylcobalamin as needed by the cell.

In order for this processing to happen, the CblC complementation group must first bind the B12 form. The strength of binding is called the affinity (Kd), and it is measured in concentration units. The higher the affinity, the lower the Kd. It turns out that the bare CblC complex has a relatively low affinity for B12, compared to the concentration of B12 in the cells, and this would be unfavorable for the necessary binding, and would tend to lower the reaction rate. 
What these researchers found is that normally glutathione binds to CblC, and in doing so, it increases the affinity of CblC for B12. And it does so by a whopping amount--over a factor of a hundred!! 
Turning this around, if glutathione becomes depleted, as in ME/CFS and autism, the affinity of CblC for B12 is going to drop substantially. I suggest that the glutathione depletion, combined with its major effect on this affinity, is the reason the B12 dosage must be so high in treating ME/CFS and autism.
Best regards,

[Citations omitted]
Back when I tried a methylation protocol for the first time, I was taking about that amount (if not more at times), but never really showed much improvement over 8 or 9 months.  In fact, the only thing I experienced was symptoms of overmethylation.  But I think that was because I had the wrong combination of forms, focusing too much on methylcobalamin.  Now that I have genetic testing results showing CBS and BHMT mutations, I know that I probably have trouble with excess methyl donors. While I haven't yet reached the stage of Yasko's protocol where B12 is added in, this time I'm going to work on taking a good mix of hydoxy- methyl-, and adenosyl- cobalamin.

Tuesday, May 21, 2013

Crowdfunding a Rituxan Trial in Norway

There's a crowdfunding effort spreading around the ME/CFS internet to fund a Rituxan trial in Norway.  Rather than try to explain the importance of this trial, I'll simply link to a Phoenix Rising article that does a much better job than I could have.

I donated a small amount today.  It's not much, but I think it's important that everyone pitch in whatever they can, even if it's a small amount.

Sunday, May 19, 2013

Nephrologist (kidney doctor) appointment

I had an appointment with a nephrologist last week to ask about my kidney-area pain.  Since the beginning of my illness, this pain has been like a barometer for my overall health.  When the kidney pain flares up, a crash is not far behind.  The pain always seems to go hand-in-hand with flare ups in other symptoms, like shortness of breath and sore throat, even when those other symptoms effect completely different areas of the body.  Somehow, it's all connected, I just can't figure out how.

I had met with a nephrologist once before, about a year ago, and he pronounced my kidneys fine.  But he was a very strange doctor with a bizzare personality.  I never felt that I could fully trust his diagnosis, and he wasn't able to explain some out-of-range test results.

This time I met with a more down-to-earth nephrologist (Dr. H.)  He was able to convince me in very clear terms that the pain I am experiencing is almost certainly not coming from my kidneys [1/7/18 edit: I now think he too was wrong], in spite of what I have believed for two years.  He stated that the kidneys have almost no nerve endings, and while it is possible to feel pain in the kidneys, this only happens when people suffer kidney stones or extreme kidney infections.  In such cases, however, apparently the pain radiates down to the lower back and groin area.  He also said that the kidneys are apparently covered by some sort of "hard shell" that protects them from being bruised or damaged from twisting and turning of the torso.  Then we reviewed my recent blood work (and the blood & urine samples from the prior nephrologist) and he agreed that everything looks good.

I appreciated that Dr. H took the time to carefully explain this to me (but not in a pedagogical way), and then to try to help me figure out what else it might be.  He was willing to step outside his speciality and discuss my health generally.  At this point, I never think that any one doctor will be able to solve my case completely, but sometimes I find one that can put a piece of the puzzle in place.

He says he occasionally sees patients, like me, that have this mysterious flank pain combined with extreme fatigue.  He wished he knew what was going on with "us," but he acknowledged that medicine does not always have all the answers yet.

Dr. H said I might think about acupuncture, which he stated has helped others with complaints similar to mine.  He also emphasized how important it is for immunocompromised people to keep their hands away from their face...something I really struggle with.  Then, after I left the appointment, he actually called my cell phone because he had still been thinking about my issue after I left.  How often does that happen?  Anyway, he said that based on my chart, he thought testosterone supplementation would help me feel better.  That's the third doctor who has told me that.


Sometimes, it seems I'm destined to repeat the same mistakes over and over again for the rest of my life and that's just the way it's going to be.  My wife and 21-month-old daughter were headed to an outdoor music festival this weekend and I couldn't decide whether to go or not.  I knew I shouldn't because of the way I had been feeling and the fact that I have ME/CFS!  

But ultimately, like so many times before, I found a way to rationalize it.  My thoughts usually run something like this:  I find a way to convince myself that I actually wouldn't expend much more energy, if any, at the festival than if I stayed at home.  "I mean, most of the time I'll just be sitting in a lawn chair listening to music," I thought.  "How is that different than if I stayed home?  So the only difference is the walk to and from the car.  How is that different from the walking I do up and down stairs and around the house?"  The devil on my shoulder also forgot to mention that I'm still trying to get over a cold.

I have to say, the festival was quite fun.  I'm fortunate I didn't miss out on the memories I now have of my daughter dancing, spinning, and often seemingly drawing more attention than the main act.  I also had the pleasure of watching her take her first bite of funnel cake, eyes widening and becoming fixated on the rest of the cake in a true eureka moment.

So I would have to say it was worth the crash.  The only problem is that I am always thinking "If I can just get past this [fill in name of event or obligation], I'll have a chance to really rest up and get past this push/crash cycle."  But there's always something new popping up.  Others seem to be much better at drawing lines.  It's a serious challenge for me, but one I'm going to work on.


Monday, May 13, 2013

What impact does ME/CFS Awareness Day have?

Did we make an impact?  Isn't hard to know whether the message is spreading outside of our community or if we're just passing the message around inside our own echo chamber.  I have to believe that we're making small but steady strides, but it's hard to make a big impact on public awareness when there's so much noise competing for people's attention.  And if we do get people's attention, what exactly is our message?

I'll get to that in a second, but first let me back up.

Sometimes I feel like there's more that I could be doing to help our community.  Other times I wonder: isn't it enough to just be looking out for myself and my family?  After tending to my own health issues, I'm not sure how much more of me is left to give to community issues.  I suspect that's a feeling that many of us face.  So if we're all struggling to get by, how do we build an impactful movement? 

And yet we all see these large, grassroots efforts being undertaken by other patient communities.  (Think MS, with its huge charity bike rides, funding drives, etc.)  Aren't MS patients in a similar situation, with little leftover energy to give to the community?  

I suspect that the major awareness and fundraising efforts put forth by other patients communities are driven, in no small part, by the work of doctors, nurses, family, friends and loved ones who support the patients -- not just the patients themselves.  So it begs the question: why not us?  Why haven't we organized the same support network that would be essential for larger awareness and fundraising drives?  

Part of the reason is that our illness is so poorly understood that many of us can't even get our own families to take it seriously (not counting me).   There's this kind of frustrating circularity to our problem here.  

ME/CFS is very poorly understood in the medical community--->Why is it poorly understood in the medical community? --->  Because researchers can't agree on the root cause or biomarkers? --->  Why can't researchers agree? --->  Because there's no research funding to chase promising leads ---> Why is there no research funding? ---> Because there are no major funding drives/charities/organizations --->  Why are there no major funding drives/charities/organizations? ---> Because ME/CFS is not viewed as a "serious" illness by most ---> Why is it not viewed as a "serious" illness by most? --->  Because ME/CFS is very poorly understood in the medical community ---> [Back to the beginning.]  

So the challenge is to break this cycle.  These awareness campaigns are designed to break the cycle at the second to last step above: the "serious illness" step.  In theory then, having solved that issue, the remaining problems would gradually solve themselves in the reverse order, working backwords to the beginning of the list.  

But the thing to keep in mind is that the awareness campaign is only the first half of that step.  Why?  Because it's not enough to just make people more aware of something.  People are never motivated to act on something merely by being aware that it exists.  An awareness campaign basically just primes people's minds to be more receptive to the full message that follows.  It makes people curious enough to want to learn more.  

Then the question is, what are we doing to follow up on the awareness campaign?  What are we doing to educate people once they've become receptive to the message? 

So the next challenge is to develop our actual message.  Because you have to admit, we don't really have a unified message.  We all have different levels of functionality, different theories of etiology, and we all seem to be pursing different treatments.  We confuse ourselves with our own cross-talk, so how are we supposed to present a unified, intelligible message to the average, healthy Joe?

That's the next step.  That's the challenge that I believe we need to be working on now.  

Thursday, May 9, 2013

Personal Update: Significant Setback

First the good news.  A few weeks ago, I wrote about an upcoming court trial at which I was scheduled to act as lead attorney.  It was set for mid-June, and I was concerned about how I would handle the long hours needed for trial preparation.  What would I do if I crashed during trial?  

Despite my prediction, the case settled last Monday.  This was a major relief.  While it's only a matter of time before another trial of that size comes along, I can rest easy for now.

Now the bad news. Two weeks ago today, I crashed fairly hard and haven't been able to pull out of it since.  The average of my daily health rating for these last 14 days is the worst 14 day stretch since I was in my "acute phase," which ended in about November, 2011.   What's more, an old symptom has returned with it: kidney pain.

It was only last month that I finally removed the "kidney pain" column from my daily health chart.  It had been one of my "big three" symptoms for most of the past 2 years, but I had noticed that the numbers slowly tapered off over the last 6 months to the point where it was mostly zeros for the past several months.  So I thought I was done with kidney pain.  Now it seems to be back as strong as ever.  I've made an appointment with a nephrologist for later today.  This will be a second opinion.

It's very difficult to pinpoint what might have caused this crash.  As usual, I have a number of theories, but they all have problems.  Here there are in order of likelihood:

1.  Rifampin:  My course of Rifampin treatment ended 8 days before I crashed.  Dr. C said if the Rifampin worked it would make me feel fluish for a few days before I started to feel better.  But it's been two weeks now.  Maybe I didn't have the rebound that Dr. C anticipated?  Rifampin is known to have strange effects on the immune system. 
2.  Yasko's methylation protocol.  I started Step 1 of Yasko's protocol about a two months ago.  It's possible that even this first step was enough to cause my body to start "pushing metals," thereby taxing my liver, kidneys, and generally making me feel ill.  I didn't think this process would start so soon (in Step 1). 
3.   To implement Yasko's protocol, I also stopped taking certain supplements to make room for others. For instance, I stopped taking a powdered multivitamin in favor of her NHF Multivitamin tablets.  I stopped taking NT Factor (because of it's calcium content, which Yasko warns against) and started taking more magnesium. 
4.  Other Supplement Changes: I recently switched brands of D-Ribose to save money.  I went from Douglas Labratories to Sedona Labs.  I also switched back to regular Coenzyme Q10 from the more active form: Ubiquinol. 
5.  A couple weeks before the crash, Dr. W had me switch from testosterone cream to injections because the cream wasn't showing any results in blood tests.  (Some people's skin has enzymes that prevent he cream from absorbing).  Could this be a reaction to testosterone?  I doubt it, but I stopped taking the injections right away after the crash.
6.  As much as I hate to even acknowledge the possibility, other patients keep telling me that stress can be a crash trigger for PWMEs.  I don't think of myself as stressed, but I suppose it's possible that the looming trial was already causing stress that I was unaware of.  But I still doubt that a little stress could cause a big crash like this one.
So, as most of you know, it gets very complicated trying to figure out the cause of a crash.  For now I just have to accept that the progress I've made over the last two years might have evaporated.  If so, I won't be discouraged.  I just have to keep fighting and renew my efforts to work with doctors to get me as functional as possible.

In the mean time, the new baby is doing fine.  Now that she's about six weeks old, she's starting to become more alert and is awake for longer portions of the day (and night!).  Just in the last couple of days we've started to see her first social smiles.  Meanwhile, her older sister (20 months) tries to be helpful about 95% of the time, "reading" books to her and patting her back after feedings.  The rest of the time she's whining and trying to draw attention back to herself.  We, of course, were told to expect that behavior, so the only surprise is that we haven't seen more trantrums.

Crash or not, life goes on.  I'm glad my family is there to make me laugh through it.

Thursday, May 2, 2013

Meditation: the evidence keeps mounting

The evidence keeps mounting for the health benefits of meditation. Here is perhaps the best article I've seen on the health benefits of meditation. Apparently, meditation changes one's genes toward more healthy genetic expression.

Frankly, my past forays into the world of meditation have never lasted very long. It can be quite frustrating to try to tune out everyday thoughts, but the experts say it gets easier with practice. I really need to commit to meditation again. My plan is to stop watching TV while I'm in the sauna and use that time instead to meditate.